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9 December 2020 – Day 1/3
JONATHAN WOLFF:
Hello everyone, a very warm welcome to you all to what we hope will be a wonderful conference on disability and social change – disability, philosophy and social change. The history of the conference, where a couple of email exchanges between Shelley and myself, I have put on a couple of conferences, and Shelley asked me why I did not put on conferences where disabled philosophers spoke about disability. And I thought about that, and thought she is quite right – I haven't done that – so let's do it properly, and I asked Shelley whether she would like to collaborate with me on the project. And she did, and Shelley put together this incredible program we have over the next three days. I am delighted to be hosting on behalf of the Blavatnik School of government, that you can see behind me who are providing support for the event, the financial support has come from the Alfred Landecker foundation who support my chair here at the school. And the Alfred Landecker foundation is named after a German Jewish man who died at the hands of the Nazis, and the program is set up to support investigation into minority rights and the stability of democracy. It feels very appropriate to be sponsoring this conference on disability as part of that program, and in honour of the name of Alfred Landecker has of course many hundreds of thousands of disabled people lost their lives to the Nazis and went through forced sterilisation. So disability and social change is something very much linked to this research program.
I will hand over to Shelley just a moment, but I just want to make sure you are all aware of the captioning, the live captioning we have arranged by AI media, you should be able to turn on the captioning by looking on the bottom of your screen, there is a button that says cc, closed caption, if you press that it will give you options – either subtitles are for the transcript – you can work out for yourself which is better.
If you are slightly confused about it, go back to the email that send you the link you clicked on to get here, and that has more information. So now let me hand over to Shelley. Thank you.
SHELLEY TREMAIN:
Like Jonathan, I want to welcome everyone who has joined us for the first day of this pathbreaking conference of critical philosophical work on disability by disabled philosophers.
Before I introduced this remarkable event, I want to acknowledge that the land from which I am during the conference is the traditional territory of the (inaudible) covered by the upper Canada treaties, and directly adjacent to (inaudible) treaty territory.
On behalf of the organisers and participants of philosophy, disability and social change, I want to humbly offer the teachings of this conference with respect and in the spirit of decolonisation.
This conference is testament to both the growth of philosophy and disability as a bona fides self field of philosophy, and the determination of disabled philosophers whose work remains largely marginalised in favour of radicalised understandings of disability that construe it as politically neutral and prior to social power.
Indeed, philosophy disability and social change challenges members of the philosophical community in at least five ways. That is, challenges philosophers to first think more critically about their metaphysical and epistemological status of disability – second, closely examine how philosophy of disability is related to the tradition and discipline of philosophy. Third, I acknowledge that continuing exclusion of disabled philosophers from the profession of philosophy. Fourth, seriously consider how philosophy and philosophers contribute to the pervasive inequality and social subordination that disabled people confront. And fifth and finally, philosophy, disability and social change challenges philosophers to develop mechanisms designed to transform the current professional and institutional position of disabled philosophers in particular.
And the economic, political and social position of disabled people more generally. Over the next three days, you will be presented with cutting-edge philosophy of disability that will highlight the diversity and range of philosophical approaches to critical work on disability. And showcases the heterogeneity with respect to race, gender, nationality, sexuality, culture, age and class of the community of disabled philosophers.
It is now my distinct pleasure and honour to hear by commence what will surely be an outstanding conference. Our first presenter is Julie E Maybee, whose preferred pronouns are she/her. I first met Julie on email, when at the urging of Jesse Prince, she contacted me about one of my articles. Julie has also been featured in dialogues on disability, a series of interviews with disabled philosophers that I run on the biopolitical philosophy blog.
Julie Maybee is Professor and chair of the Department of philosophy of leaving College of the city University of New York, as well as the director of Liman's interdisciplinary disability studies minor, and a teacher in the disability studies Masters program for (inaudible) school of professional studies. She is the author of two books, texturing Hegel: an illustrated guide to Hegel's Encyclopaedia logic, published by Lexington books in 2009, and making and unmaking disability, the three body approach, published by Rowman and Littlefield in 2019.
Please join me in welcoming Julie Maybee, and use the Q and a button at the bottom of your screen to submit questions and comments for Julie to Katie Tyner, our moderator. A reminder that captioning is available through the CC button which can also be found at the bottom of your screen.
JULIE MAYBEE: Thank you so much Shelley and thanks to you and Jonathan for organising such a terrific conference. I am going to start my – sharing my presentation now. I hope everyone can see, let me know if there is a problem. So far today I want to pick up on some themes that I developed in the book you mention Shelley, to try to answer the question, what can philosophers do to unmake disability, or to change our society to improve the lives of disabled people.
I would like to propose that philosophers adopt a particular general strategy for making disability or promoting social change for disabled people. Which I will illustrate by talking about the Japanese bathrooms. The sociologist Irving K Zola once wrote about how amazed he was about the Japanese public bathroom that he encountered in his travels. According to his description, the bathroom had a number of stalls with different options. I Japanese-style squatting toilet, squatting to grab bars, Western-style toilets, a Western-style with grab bars, a large, official 'handicap' stall with a toilet with grab after the removal up and down, as he pointed out, which allowed for all manner of transfer, and two sizes of urinals that flushed automatically, also with grab bars all around for gripping wherever needed.
As you can see in the photo I got off the internet, the photo of a Japanese bathroom on the bottom includes a very deep sink which is supposedly to allow for the cleaning of colostomy bags according to the poster of the photo.
Zola used the example to suggest that disability is not a fixed or static status, or an either/or category, but a continuum. Whereas US bathrooms have either barebones stalls for supposedly nondisabled people, or designated handicap stalls for supposedly disabled people, he suggested that the Japanese bathrooms treated disability as a continuum by providing a range of mobility options in all of the source.
I would like to suggest that the Japanese bathrooms provide us with a more general formula for unmaking disability. Unlike the US bathrooms, the Japanese bathrooms did not rely on classifying people at all. So I would like to suggest, instead of focusing on classifying people, like the Japanese bathrooms, we should focus on classifying types of access. And we should do so long I will describe as three dimensions of embodiments.
So let me now turn to embodiments. We can define embodiment generally as what it is like as an object, and what it feels like from the inside as it were to move about in the world. Preliminary following anthropologists, I would like to say there are three layers, or three dimensions of embodiment.
The first body is the personal body which is what an individual person's body is alike in so far as it is an object. As well as what it feels like from the inside, or how it is experience.
The interpersonal body is how bodies are defined and experienced in interpersonal relations and social roles. The institutional body is how bodies are defined and experienced in large institutions and structures, including the economic system of capitalism.
I would like to note that this division into the three bodies is any preliminary, because in some cultures, the personal body is already regarded as socially connected to others. It is not experienced as personal, which is why in the diagram on the slide I have placed the dashed oval around the figure representing the personal body.
Inger who could gamma culture in Papua New Guinea, people regarded themselves as most themselves when they are in physical contact with others. The Suya from Brazil believe they share a body with whom they share bodily fluids, Siemens, blood, spit and so on.
In many cultures, there is no conception of a personal body step indeed, anthropology is and Margaret M Locke have argued that while all humans have some form of what we call appropriate exception which may conception. The modern conception is a recent conception.
Still, if we use the division into the three bodies a preliminary device for thinking about embodiment, let me start by asking, what can philosophers do to unmake this ability in terms of the third body, the institutional body.
I want to begin by saying something briefly about how capitalism came to create, or define disability as an inability to labour in the capitalist wage market.
A definition that is still active today, for instance in social security law in the United States. As has historian Irina Metzler suggested, people increasingly became to be paid for the time that they work which created productivity requirements in which physical abilities became a relatively more important than before and narrow the definition of what counts as genuine economic activity.
These factors excluded some people from the wage market, defining them as a disabled, in the sense of being unable to labour in a capitalist wage market.
Anthropologist, Ida Nikolai Sennett noticed a status change in people we would class as disabled in the Puno bar. As the Puno bar began relying more heavily on cash during the 1980s, less importance was given to the substantial activities that people will regard as disabled were doing.
There were fewer as well as a few kinds of tasks that they were able to carry out. Tars that had previously given them social value.
Here I would like to suggest that philosophers follow Cornell West's advice when he argued in 1983 "the principal task of the African-American philosopher is to keep alive the idea of a revolutionary future, a better future different from the deplorable present, a state of affairs in which the multifaceted oppression of the Afro-Americans and others is, if not eliminated, alleviated."
This task, West said requires the aid of a sophisticated analysis and criticism of capitalism.
But there is capitalism and there is capitalism. You might think that the shift to redeem I's economy is based on providing services will make it easier for disabled people to access the wage market. The economy of the role is now dominated by
Informal, part-time and temporary jobs and contracts for individual projects and a variety of personal services.
The flexibility might seem able to help at least some disabled people gain access to the labour market.
In fact, however, deindustrialisation has not helped. Instead it has led to increased global competition which has placed a greater emphasis on economic growth and efficiency. It has led to high requirements for workers in terms of skills and efficiency.
Indeed, that guy standing the Economist, Guy has argued that the deindustrialisation has created a class of people that he calls the precarious.
We need look no further than our own backyards for such a group and CUNY for an example, 56% of classes are now taught by adjuncts who a contract workers cobble together a precarious living across a number of campuses, have a large number of students and are required to reteach multiple topics and use multiple computer platforms.
So the amount of skill that they now need, one skill, one of my adjuncts once told me he developed, he can now grade papers while standing on the subway.
Indeed the economist Ben Bown Berg Geiger has argued that deindustrialisation is actually reconstructing what counts as disability today. By putting more people with health conditions out of the wage market.
Incapacity or disability benefits have been increasing across the OECD countries which is ironic since overall population health has been improving and work is becoming generally less physically demanding. Geiger argued that the loss of control over work and time are pushing with health conditions out of the wage market.
Here I would like to suggest that philosophers apply the general strategy proposed earlier in the discussion of the Japanese bathrooms.
Instead of classifying individual people, philosophers need to help classify and expand access to genuine economic activity.
Studies show that individualistic strategies, for example job-training, individual job-training do not work. Philosophers should advocate for strategies that involve changing the employment context, for example wage subsidies, or money for employees to make work environments more accessible.
They should also insist that employers require only skills that are needed to do the job. Indeed, as Bamberger suggested, we should go further and actually redefine what counts as economic activity beyond wage labour.
Paid house work, family work, club work and what is now volunteer work and cooperative labour systems. As well as favour credits for example exchanging work for free childcare are things we should consider.
Here, the feminist project have reimagined the economy, as per example Nancy Fraser engaged. It would be a project that I would recommend. With an eye to the specific position of disabled people, so reimagining the economy will have to take account of the broader civil rights needs and those that disable people have, such as access to transportation.
Such as unrecognised forms whether disabled people do, for example the extra time that it takes for tasks, or stress a ride, which the joke which is called access the right, but given how much time people spend waiting around for rights, people in New York call it "stressed a ride." There is also patient welcome biographical work that disabled work often have to do when they have to explain things to other people about their biography, or about their health conditions.
Philosophers also need to work to unmake the values that have been associated with capitalism. For example to reject the capitalist connection between citizenship rights and social status and paid labour.
Following Christen Bulmer's analysis of the neurodiversity movement, philosophers should also work to replace the relationship between social status and being normal with the notion of "quirky citizenship." A Japanese bathroom is due.
What can philosophers do to unmake disability in terms of the second body? The interpersonal body. Remember that the interpersonal body, refers to how embodiment is defined in terms of interpersonal relationships and social roles.
This sociologist has pointed out, interpersonal relations are also affected by what we can think of as bodily capital. Her we can think that the normal body is a form of privately held capital that can be converted into value in interpersonal context.
Having a body that looks and behaves normally may be even more important in a de-industrialised economy today that is focused on providing services.
As guy standing has observed, personal deportment skills, looking good, having a winning smile, a well timed witticism are now more important for employment than they were before.
Another phenomenon is the phenomenon of disability spread and another phenomenon that exhibits the importance we place on bodies in interpersonal relations.
Disability spread is the idea that when a nondisabled person encounters a disabled person, in the mind of the nondisabled person, the status of the disability spreads as it were over the whole identity, the disabled person's whole identity. Some people have called this the idea of disability as a master status.
The sociologist has argued that the emphasis on bodies in society is rooted on the privileging of the site over the other senses. She writes, "in cultures whether visual sense is not privileged, the body is not read as a blueprint for society."
She also writes, "a concentration of vision is the primary mode of comprehending reality promotes what can be seen over that which is not apparent to the eye, it misses the upper levels and the nuances of existence."
As philosophers, we must promote and pay more attention to other levels and nuances of existence. For example, place great emphasis on identity is defined by social relationships and other nonvisible characteristics.
Here a poem by the African poet Pat Barker can be helpful, in her poem entitled "for the white person who wants to know how to be my friend. The first thing you do is forget that I'm black, the second you must never forget that I'm black.
Here I suggest the lesson is that we need to focus not on bodies, but on embodiment, along all the dimensions was up on the wider sociopolitical context in which people navigate the world.
In terms of social roles, disabled people have been and are systematically denied access to the full range of adult social roles, particularly the roles of sexual partner and parents.
We need to reconstruct our social world to provide disabled people with access to valued social roles, including the roles of sexual partner and parent.
We need to defined disabled people with sexual citizens with the right to new modes of access to sex. We need to help change the social structures, personal assistance services, group homes to increase people's access to sex.
A move that requires undercutting the idea that sex is "private quote. We can also define parental confidence as a future parent social networks, rather than of individual parents. And we can promote interdependent living skills and arrangement and competence in relationship building and advocacy.
What can philosophers do to unmake disability in terms of the first body? The personal body? In terms of the experience of the personal body, we tend to think of the experiences of our own bodies are simply given, but Zola argued that experiences of the personal body are actually socially defined. He gave the example of feeling tired, sore, cramped, travelling by aeroplane, and that experience was structured by social context, not only by the structured design of the airport which had long hallways which he had to walk down using his brace and his cane, but also the social expectations that ship his behaviour – the idea that he must complete tasks in as normal a way as possible, that is by walking.
Once Zola started using wheelchairs to navigate airports he found that he did not arrive at his destination is tired, sore and cramps, that is what led him to realise just how that experience of travelling had been structured by social context. Here, philosophers need to redefine social context including social expectations that define how disabled people experience their own bodies.
In terms of what the personal body is as an object in the world, I would like to suggest that it too is socially defined. We can begin to see how it is socially defined by thinking about Nietzsche's observation that concepts are metaphors – they treat a bunch of things that aren't exactly alike as if they are alike, and forget about the differences.
The philosopher Norwood Russell Hanson argued that vile language does not produce what we think about, it does form or organise what we perceive as the facts. As if I knew think Katie has argued, socially shared languages have also defined how we identify ourselves and how we identify others as object facts of the world. People identify others as fact in the world using the languages they speak – languages that determine how they think about the world. A person's identity is therefore defined by themselves as well as others by reference to the fact identified by their languages.
Putting Menkiti's and Hanson views together, we could say that languages and our shared systems ship the fact that we perceive, including about what other people are like their identities as objects in the world. In the Middle Ages in Europe, for example, words that were used to refer to what we think of as individual physical conditions, or impairment, debilitated, weak, impotence for example also referred to social economic status as, so a widow for example would be referred to using those same terms. Suggesting that there was no clear distinction between physical conditions and social conditions.
Disability and impairment are highly abstract concepts that don't exist in many cultures, particularly small-scale societies in which people are defined primarily by social relationships and roles. To make disability in terms of the first personal embodiment, philosophies will have to burst the dominant socially shared perceptual bubble that constructs the identity of people we regard as disabled.
Coming to see we people -- people we define as disabled on their own terms will require bursting the dominant perceptual bubbles. We must come to see, hear, touch, smell, taste the world differently and perceived different facts.
One thing philosophers can do is work to abandon the deficit thinking that is built into the concept of disability. Characterising people only in terms of what they cannot do, given the current environment, fails to take into account their corporeal powers. We must acknowledge corporeal powers that are inseparable from their vulnerability – for example, activist Sunaura Taylor's ability to carry her coffee in her mouth, Christina, blind and deaf student David good wrote about her skill in what he called alternative object readings.
Because Christina did not speak a language, she was not guided in her work with objects by what object was supposedly for, so he found she had a great skill in using objects differently. Deficit thinking feels that take account of the ways in which social concept – that contexts construct peoples and capacities – for example, in special education tests we drag students into small rooms with strangers who pepper them with questions completely out of context, and then wonder why students can't seem to do things.
Here again, we must return to the lesson learned from Zoeller's encounter with a Japanese bathroom. Instead of classifying people, we need to remake socially defined environments including our languages and concepts, in ways that construct the widest variety of people as capable and is able to access our socially defined and our social world.
Let me just end with some brief remarks on philosophical method. The first thing I would like to suggest is that doing what I have proposed here – that philosophers should do – suggests some change in philosophical method. Philosophers should take account of the conditions on the ground, which often require stepping out of philosophy into other disciplines. We should also think of concept as the products of living human beings in their contexts, if concept acumen made they can be changed or abandoned.
Finally, I recommend thinking historically a multicultural, that is getting out of our conceptual and perceptual bubbles. Thank you.
SHELLEY TREMAIN: Thank you Julie. I am now going to ask some of the questions that have been posed.
JULIE MAYBEE: Wonderful.
SHELLEY TREMAIN: All of the questions are quite interesting, the first one I am going to pursue this from – I'm sorry I missed Francis name – -- pronounced this name – that question just disappeared. The question literally disappeared. OK, I'm going to ask a question from David Lawson, who says that – who thinks your presentation was excellent Julie, and wonders how people with visible disabilities – invisible disabilities, pardon me, fit into your understanding of disability and its association with embodiment?
JULIE MAYBEE: Thanks for the great question, so people with invisible disabilities struggle – tend to struggle with a different problem from the problem that people with visible disabilities often face in interpersonal context, so for example, someone with an invisible disability when a nondisabled person engages with them, they appear normal, and so then the person – the nondisabled person – assumes that the person can do everything like everybody else, right? In the normal, supposedly normal way.
And so people with invisible disabilities – their struggle is then to try to convince people that they can't do these things, but, so once we take into consideration the wider social context of embodiment, then we can take into account these kinds of interpersonal tensions and problems and address them just as we do with other questions of embodiment.
SHELLEY TREMAIN: OK, thank you. Our next question comes from (unknown term) – sorry if I disclose that the -- mispronounced that name. Who enjoyed hearing about the three bodies, and wondered about the example of the blurred lines between personal and interpersonal body? And was wondering if there could be a similar blurring between personal and institutional bodies, and the fact that this referred back to Foucault's idea of biopower, and wondered if there is a way to separate – at least in the – a blurring of the personal and institutional bodies – at least in the context of modern societies, and was wondering if there is a way to separate the personal and institutional body?
JULIE MAYBEE: That was a great point, I had not really thought about blurring lines between the interpersonal and the institutional bodies. I think it's – it's a very appealing, friendly amendment I guess, because my main idea is just that this is just a way of thinking, but I don't – from our point of view largely – but I'm not recommending it as a permanent, or definitive breakdown of embodiment.
It is just a way to think about different sort of embodiment contexts if you will. And I think they are all kind of blurred and maybe they should be for, who knows, maybe five, so I would be open to that kind of blurring certainly and to thinking about – more about the ways in which the levels that I'm using here just as a heuristic device really are blurred, so that is a wonderful question.
SHELLEY TREMAIN: That was a great answer, and here is another question from the Linda Hall who will be presenting on Friday, and Melinda wants to thank you for your fabulous talk and she was wondering about the idea of making disability through removing barriers to adulthood, of adult rules? The lender was wondering, is there any sense in which you think the interpolation of the child or the adult comes from herbalism and capitalism? The lender worries that shoring up the idea, the current idea of adults might play into this.
JULIE MAYBEE: Another excellent suggestion that I had not thought about. And I'm open to bursting my perceptual bubble in anyway possible. So I think that is another excellent suggestion, what, you know, to what degree have the roles of child and adult he defined by capitalism, to what degree should we be sceptical about them – I think those are all, apparently, excellent questions. To which I do not have answers, and I had not thought about. But
SHELLEY L TREMAIN:
I was wondering if you could elaborate on the way that philosophy about disability and philosophers with disabilities can inform and transform the playing field with respect to activism and access to civil rights.
JULIE E MAYBEE:
Well, I mean, I think philosophers can do a lot and we have organisations, associations. As an individual you can belong to an association, we can promote these things in our personal lives.
So I think there is a lot of room for philosophers to do things, you know, this is a discussion that for example I have had with some of my… My daughter who is disabled and had various kinds of therapists.
One of the things I challenge them about was, is it enough for an occupational therapist, for example to just be working in the clinic, other or not political things that occupational therapists should do as well to try to make places more accessible in the city. For instance.
I think the same thing can be asked of philosophers, you know. Taking Cornel West suggestion seriously and certainly there is a lot of more specific work I have discussed here, surely, some of your own work on what philosophers can do to make, to help give disabled people access, not only to social work generally, but their philosophy, the philosophy profession itself as well.
I think that other scholars have focused more specifically on that question. Thank you, Shelley.
SHELLEY L TREMAIN:
OK, here is a question from our Kera Vico who thanks you for your powerful presentation and is wondering if you can elaborate on the alternative forms of economic activity, in order to de-commodified labour as you said.
This question notes that we are witnessing ongoing struggle to include disabled people into open labour markets through policies and practices overlooking the possibility to think wider and recognise ways that income security could be guaranteed, except through wages.
JULIE E MAYBEE:
Yeah, I mean there are economies who have done some of this work. Philosophers have thought about it, but we have to be careful about the issue of care when it comes to disabled people.
I think the basic idea is to find ways of economically rewarding work that is outside of wage labour. One of those involves making what is in our volunteer work, rewarding that economically.
Again, I am not an expert in this area, but I think about my own daughter for example who has many wonderful characteristics. For instance, she has a way of making people feel like they are the most important person in the room.
She is very socially skilled and she has worked with elderly people for example, she plays games with them and they love her. Yet it is very difficult for her to get a full-time job, doing this kind of work, if there were a way to reward economically this and other kinds of work, I think that disabled people would be able to participate much more broadly in our economy than they already do.
Indeed, one of the things about deindustrialisation that I tried to point towards is that it is actually making work life worse for everybody and so we have a lot of incentive, I think to rethink their current work arrangements under capitalism.
SHELLEY L TREMAIN:
We have a few minutes left. Here is a question from Raphael Marius who asks, this is a question that I often confront.
"In terms of unmaking disability and deficits thinking and in particular the personal body. How can we undertake this task, but nevertheless ensure that we affirm the lived experiences of people with conditions like chronic pain and chronic fatigue? Conditions that are and this is contextual inherently bad and shouldn't be euthanised, or dismissed as social artefacts."
JULIE E MAYBEE:
So, my claim is that not that disability is made up of a whole cloth, that there are experiences there, there is there there. What changes is how we identify and define it. How we cut up the world.
So, people with mental illness for example, what we call mental illness. Right? No one is denying that certain people experience the stress, lots of different types of distress. How we define stress, the concept of mental illness has a whole baggage with it, that it is like a physical condition, an illness which is a physical illness.
That it is in a person's body, that the concepts that we used to cut up the world shape how we perceive the world, how we understand what that distress is like. I am not suggesting that there isn't distress, it is a question of how we understand and identify that distress. What concepts we use to understand and identify. In no way am I suggesting that there is not a real thing called distress.
As we know, some psychologists have talked about, you know one of the things that happens when there is a disaster, is that Western countries will send psychologists into help people process the disaster and in some cases, the local people actually sent the psychologist away.
Because they found that the approach is that the psychologist took were totally misguided. For example, one person in one source read, they wanted us to sit in dark rooms and talk about what had happened, instead we want to go outside in the sun and dance, right.
It is not that there is in distress, it is a question of how we understand the distress. The concepts we use and then with those concepts tell us we need to do to address the distress. I do not know if that helps.
SHELLEY L TREMAIN:
I thought that was an excellent answer, Julie. I think this will be our last question. Alan Cantor asks…
"How would cognitive disabilities figure in the three-dimensional embodiment approach?" He wonders "if we need different conceptualisations of subjectivity, agency and interdependency as well as care, needs and values."
JULIE E MAYBEE:
And is a great question, again I am open to all kinds of re-conceptualisations. I think all that thinking is great. Cognitive disability is a subject that is close to my heart in light of my family situation and my daughter. I think about, I think that you can roughly, you can roughly about cognitive disability in relation to the three bodies, but also acknowledging the ways in which they are constructed by social context.
So, a personal level, somebody has, you know certain things that they do, or don't do and by that can be made worse by social context than interpersonal relations, how people are treated, what roles they are assigned. Then, of course it is dictation, there is a long history of developmental disability institutions.
So I think we can think roughly about the experiences as well as the definitions of cognitive disability. In relation to the three bodies. I certainly would be open to various kinds of rethinking in that area as well. Sony ultra Mane OK, thanks very much, Julie. This has been a terrific session and I hope that everybody will join me in thanking Julie and we will take a 10 minute break and we will come back. We will come back at five minutes past the hour.
JULIE E MAYBEE:
Thank you very much.
JONATHAN WOLFF:
Sorry, I was muted there. Thank you Julie, excellent talk. Very, very interesting. We have a lot of time to talk about that, I hope. Shelley, you are there? And Jamie?
JULIE E MAYBEE:
I will head out and join you on the other line as a participant, a conference attendee, though I do have class at 9:30 AM. I will have to duck out briefly.
SPEAKER: Hello everyone, great to be with you today, just some notes before I read my introduction – you should see on your screen that the event is being a caption, and you will be able to access the captions through the closed caption button, the CC button at the bottom of your screen. This is a webinar format, so you will not be able to use your cameras and microphones, but you can put questions in the Q1 day box -- the Q and a box which is accessible from the buttons at the bottom of the screen. And those notes are also put in the chat.
But without further adieu, I want to get started with the introduction, hello everyone, thank you for joining us today, I'm Olufemi Taiwo from Georgetown University, and will be chairing the session – I'm very grateful to chair this session would relate to my work in social political philosophy, much of which argues for a forward-looking more constructive viewpoint toward justice, with a focus on Africa and its dye aspera. Diaspora.
That work has been advanced by scholars of disability, particularly those working on intellectual problems and questions around the idea of universal design and the capabilities approach. Which tells how to think of our design choices, our terms of justice and access. Here presenting on African communitarian philosophy and disability in African contexts is Doctor Elvis Imafidon. He is a lecturer in the Department of philosophy at Ambrose (inaudible) University in Nigeria, and fellow of the Harrisburg Institute for advanced study. He is also the editor of ontology ethics, essays in African ethics, 2013, and the ethics of subjectivity, perspective since the dawn of (inaudible), 2015.
He is also the author of the question of rationality of African traditional thought and introduction, 2013. Welcome and thank you.
ELVIS IMAFIDON: Thank you, I hope you can hear me now? I am Elvis Imafidon, sorry about the bio ice earlier, I'm actually connecting from the UK, at SOAS University of London, and I'm happy to present this paper on African communitarian philosophy and disability in African context.
I will begin with some preliminary remarks. First, about the personal context of this discourse. I am Nigerian, and I have spent virtually all of my life living within an African space within Nigeria, for over 3 1/2 decades, and being a person with (inaudible), I have -- albinism, I have experienced first-hand the experience of persons with disability in African context, and this has often been a drive for my research on disability from an African context.
The professional context of my discourse stems from the fact that I have been trained as an African philosopher, with a speciality in African philosophy, but also African ethics and ontology. I have applied this training in philosophy to the critique of African philosophy and its perspective of disability.
So my interest in disability studies, you could say his personal and professional. The structure of the presentation will be that I will begin by discussing the relationship between African philosophy and the understanding of disability African context. I will then discuss what I mean by communitarian philosophy as a (inaudible) loss topical theory, in African thought.
I will proceed further to talk about African communitarian ontology based on African philosophy, and then see how it has built within it an ontology of exclusion and how this forms the basis for the interpretation of disability. I will then conclude by examining some implications for disability and disability studies. And the duty contemporary African philosophers have in reconstructing the African sense of community from the narrow to the broad sense.
JONATHAN WOLFF: Just interrupts – your slide has come back on, it I will disappear.
ELVIS IMAFIDON: It went off a bit, sorry. So yes, let's begin with why African philosophy is important in understanding disability in Africa. Critical studies of and debates about disability in the last few decades show clearly that philosophy is complicit must be implicated in the way disability has been understood in human history.
Philosophical ideologies and theories and (inaudible) three has been practised through the ages have had significant effects on persons with disabilities and on marginalised bodies.
SPEAKER: Your slides of – screensaver on?
ELVIS IMAFIDON: It off again right?
SPEAKER: Yes, it's got a sort of Dagnall lines…
ELVIS IMAFIDON: Just a moment. Yes, sorry, I have to stop sharing that. So doesn't distract me. I was saying, we think about the way, for example, how Western philosophy in Western philosophy at the (inaudible) Plato's ideal form of the human body and many theories of personhood and how all of these present deeply entrenched into society and history and ideal, a norm of the body and mind, what ought to be the physical and mental, thereby marginalising and the locating anything not fitting within that role. So Flossie does play a role in how your disability.
Philosophy has also sometimes presented tools and basis and a critical debate has emerged – think for instance on the Foucauldian and the radiant philosophies of (inaudible), so philosophies seen at the very least to be the basis on which the element -- the ailment and the cure can be found. This in many ways is the case with African philosophy, African philosophy is the interpretation of reality, knowledge and values within African space, has played a key role in how Africans understand things including disability.
It allows the interpretation and understanding of reality to permeate society and be absolved into everyday life. Unlike the trend in classical philosophy in the West, for instance, the efforts made by Plato and Aristotle and by Buddha in Eastern philosophy. To present philosophy as a separate enterprise to the column people.
Philosophy in indigenous Africa has always been structured as part of the lived experiences of the people. It is part of the soul itself, the pro verbs, adages and rituals, the ceremonies and festivals. It is part of the art and literature of the African peoples.
Although there are individual African philosophers one can point to, African philosophy is more ovate state collective discourse.… Places of sub Saharan Africa and deliberate on existence. They discussed theories and understandings, which premiered into society. Such ideas and interpretation infused into society which have an impact.
We must understand disability as interpreted in Africa, it is an appeal to the collective understanding and this is important because, we may not be able to understand why the body parts are sold on the black market in terms of their value.… Left in the house of a witchdoctor.
People do not understand this from a western theoretical lens for example. Can we make sense of it? Then create strategies for deconstruction and criticism.
It is almost impossible to be, to adequately provide a critique of what we do not understand. It is important to… Through African philosophy. That is what I tend to do with the African theory of philosophy.
What do I mean by African community philosophy? Some would call it African, Terry and philosophy. It is a… Existential philosophy is defended by scholars as a unique and intensive African philosophy that not only defines the African way of life and forms the basis for African identity, but also it has African cultures.
In the west of… Is a discourse of formation between the individual and the community. It is a view which skews the dominant position of the many African scholars, the privacy of the community.
We recall a classical discussion of African philosophy, when he says and I quote "only in terms of other people does the individual become conscious of his own being, his own duties, his privileges and response abilities towards himself and towards other people. Since we are, therefore I am." This is an understanding of African philosophy.
The Ghanaian philosopher explained that African philosophy continues that community life is not optional for any person. It is only that the person is at war and in contrary, that human person cannot perhaps, must not live in isolation from other persons, that the human person is naturally orientated towards other persons and must have a relationship with them.
Following from these, the person is constituted, it is only partly so by a social relationship which she finds herself. At the theological level of African philosophy, the concept of reality has the understanding and structure of being of reality of what is and what is not. How each individual being is responsible for with a short and sustained harmony and equilibrium within the community of things.
It is explained by saying that I will quote him here "in the traditional African view, reality, or nature is a continuum of harmonious composites… Human beings are really a small part of this composites reality. By life forces. Natural objects and reality are interlocking forces. Reality always seeks to maintain an equilibrium and move a network of elements and life forces. Because it is a continuum, there is no interaction between the human itself, the community, the dead, spiritual, metaphysical entities. They are interrelated, the interlock in some sense and in some sense, one is an extension of the other."
So African ethics suggest the idea of harmony, harmony for the human well-being it is a foundation of African philosophy. We have to unite the thoughts of people, the rational between traditional and society.
With the aid of the community it is an essential trust, the idea of promoting human welfare is at the centre of commentariat philosophy. It is also part of African traditions.
Commentariat traditions me that people should act in a way with their own interests and to promote human well-being and welfare, the interest of their communities. It becomes imperative in African communities to act in ways that preserve and promote all of that in the communal structure. Since this is the only way you can gain interest and pursue relevance.
The philosophy is highly valued and amongst philosophers and scholars and has been applied as a theory for resolving issues and problems in different spheres of life in Africa such as business challenges, governmental issues, healthcare and so on. For example, African environmental ethics such as arguing for her African ethics and communitarianism.
We have the applications to care for it, several examples of how the links to all of that is treated and cared for is vital for the community's well-being and survival in Africa. It is explained by these colours.
However, contemporary philosophers have been critical of the philosophy. The U Guardian philosopher argues that material structures cannot themselves become authoritarian and overriding, consequently they can become a hindrance to the community and social development.
These are expressed and are important issues to be raised about the philosophy and have led to heated debates among scholars who have had thoughts and the divide of moderate views. I feel there is a much more important issue that is also of note in African humanitarian philosophy and that floor and that issue with African, communitarian philosophy.
There is the element of exclusion, as different entities where X represents the category of certain things. It also consists of the disposition, the responsibility thereof of the members of the accepted things to those other than in the accepted category. African commentariat philosophy implies a box, or a house of being where entities tick that box and are obligated and committed to maintaining within that communal structure. Through relational means.
This raises questions, which are vital to our understanding of disability within the African context. What sense of obligation, care, sets commitment. Especially in this case, persons within a community of self. Have towards entities of persons that do not fit within that community of service and from that community of cells.
Do they fall outside the communal structure, more specifically, is it justified that persons in an African community treat badly or treat other people outside of the community in general, for the sake of self-preservation and communal house.
It has been all ignored the extent to which the philosophy, although beneficial, it is an understanding of reality. They become reactive the things outside with the same understanding. As explained as well as into connected and interlocked as the African community may be, it is still exclusive in terms of beings and entities.
The basic reason for this is to protect the socially approved web of relationships, anything that may threaten. Interestingly in African traditional models, not only people with deadly contagious, incurable diseases are expelled from the community.
Even people who do not live up to the expectations of the community or isolated to protect the community. This explains the reasons for punishment. Beyond physically ill and morally corrupt persons, African philosophy also has unusual natures, they are treated as accepted beings. It varies from one African community to the other. As with disabilities and other variations.
Persons with disability faced discrimination, stigma, marginalisation, social isolation such as killing commodification of the body parts and denial of fundamental human rights, because they are deeply entrenched against people with disabilities in African philosophy.
It provides an ideal of the body and those persons with disability failed to meet up for one reason or the other. This becomes a business for exclusion, to exclusion from the The implication of these for persons with disability is that within African communitarian ontology, there tends to be some legitimation of discrimination against marginalised (inaudible).
Xenophobia for instance, within that context, those who are seen as (inaudible) and then face this... Are told to leave, basically seen as not fit (inaudible) and understanding of community, and it helps understand (inaudible), so it seems we do not have (inaudible)
. There is already this idea of (inaudible). Inclusion, care, (inaudible) and this hope was to understand what Mike marginalised persons with disability. (inaudible) also becomes (inaudible) for how to manage them (inaudible).
SPEAKER: We are losing your connection little bit – would you mind muting and commuting just to see, if we can wait maybe 10 seconds just to see if the connection might… We were losing some of your audio, it was intermittent.
ELVIS IMAFIDON: OK.
SPEAKER: Could you do a quick test to see if that's any better?
ELVIS IMAFIDON: OK. Is it better (inaudible)
SPEAKER: We are still losing you a little. I'm going to send you an instruction, you should be able to dial in on your phone if that's an option for you?
ELVIS IMAFIDON: Just a moment. Is it better now?
SPEAKER: Could you say a few words? It was sort of intermittent.
JONATHAN WOLFF: If you encounter us, we can tell you what is coming and going out again. -- Could count falls. -- Follows.
ELVIS IMAFIDON: Can you hear me now? I heard that, but I don't know if you are speaking not that we are not hearing very much of you at all I'm afraid.
SPEAKER: It seems to have improved a little, the carry on and if it is an issue I could, you could dial the number that I've sent you in the chat?
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ELVIS IMAFIDON: So I was talking about how the African communitarian ontology legitimates the marginalisation and discrimination against persons with disability, because these people are seen within that ontological framework is not fitting within the community of selves, and I was drifting it with a similar example of xenophobia in South Africa, where people from other parts of Africa, Nigerians, Zimbabwe, South Africa discriminated against because they do not fit within that narrow sense of community of selves, and they are excluded.
That tends to (inaudible) we do not have obligation to care, and to, the obligation to care for you because you are not within the community of selves that we want to care for, and that helps us understand why people with disability in different African provinces face similar marginalisation, exclusion and discrimination within African societies.
Another major issue for persons with disabilities, it becomes a barrier to accurate knowledge of our specific forms of disability, and how to manage them, for instance in terms of healthcare and social inclusion, because people with disabilities have physically lived by these understanding that they are being within the community of souls, and when the need to – rather than getting management, healthcare management for whatever disability issues they might have, caring for a person with epilepsy are person with albinism, they tend to follow – the understanding within the African structure, and the African ontology, in taking care of these challenges which may not in any way help improve the conditions of the people that I want to get, for instance, taking a person to a witchdoctor because it is assumed that the person is possessed by some evil spirits, or the person is suffering from the punishment cost by the ancestors.
And that's where, the condition is mismanaged, the person does not get the needed care and attention within such a community. So the only way we can then understand this ability is therefore within this African horizon, had Africans view people with disability and how they they understand disability. (inaudible) exclusion from the norm, the norm of being, the norm of personhood, there will always be this social exclusion of people with disability within African contexts, and contemporary African philosophy there has the task of theorising broad sense of community, because it is obvious that a sense of community – the sense of community, the sense of community that Africans have is the narrow sense, so the community have an obligation as my immediate community, within that narrow structure of being, why the idea of community is very important as it stresses the need for relational and (inaudible) living. That sense of community needs to be brought to inclusive of people who naturally do not fall within that idea of community within African ontology.
So yes. I hope you got the final part of my talk, sorry for the poor network connection, I really don't understand what happened – thank you for the opportunity to present this.
OLUFEMI: thank you for the presentation, I think we'll move to the Q1 day. Now, so the first question I am aware of is by Shelley, Shelley D want to ask your question live?
SHELLEY TREMAIN: Sure. I wanted to first of all say that I presentation was very provocative, thank you very much all this. I wanted to ask you, and this question might not be well formulated and you might want to reconfigure it, but is the exclusion that you describe inherent to the ontology of African communitarian ontology, or… Sorry, I have written this down wrong, or is it inherent, or contingent? The ontology be reconfigured in non-exclusionary ways?
ELVIS IMAFIDON: Argue that question Shelley. It is inherent, and that is what I feel should be the primary task of African philosophy: reconfiguring that ontology in ways that are inclusive, and I think that has a lot to do with education, because the idea that the community to which I have responsibility towards is just that closed, narrow sense of community, has cost me a lot of troubles and problems within African spaces.
Take for instance corruption in Africa. Our leaders feel that the staff are most obligated to the primary community, the community that they come from, rather than the larger community. So if you have a precedent – not a president in Nigeria who is from (inaudible), they will benefit more than the rest of the country because his responsibilities assumed to be to his own community. That is not just a problem for corruption offer disability, foreigners living within the space, that is very narrow sense of community forms the basis for understanding a lot of the issues that formed within Africa, and the role I think that African philosophers should be playing his forging ways for that sense of community to become more inclusive for persons who are normally not seen as fitting within that space.
What I have done within some of my essays is to show how education – that is geared towards enlightenment, enlightening the people, a grassroots education, not just what is done in schools, because that might just be teaching a class object that is not necessarily reaching the heart of the people, using certain concepts within African thought to educate people about how they have obligations to the entire society, not just small units of community. (inaudible) for instance, has a large obligation that goes beyond that small unit of community.
SHELLEY TREMAIN: OK great, thank you.
SPEAKER: Will skip this next question, because I think it is related, who asked, very good presentation but I'm not clear about the idea of narrow or broad sense of community and duplication they have for disabled people in Africa, that picks up where you left off.
ELVIS IMAFIDON: It is similar to what Shelley asked, and narrow sense of (inaudible) would be understanding community to be within – to be limited in scope, to what the ontology prescribes, so a broad sense of community that encompasses and includes all forms of beings into, incorporates all forms of being into its form, and is not restricted to that unit that is normally understood to be the founding community.
Take for example, within, say, metaphysics in Ghana, the idea of what means would consist of humans, ancestral's, divinities, deities and anything are not falling within that would be seen as excluded from that community of beings.
It would mean that to fit within it, it was fulfilled and not the expectations of being part of that community. Being others that do not fit within that mode, means you are brought into this sense of community and it is no longer narrow and narrow down to those who fit within the norm, or what inside the normal means from that structure.
OLUFEMI TAIWO:
Thank you, the next question we will take is Luke Beasley asked, "I wonder if you could ask how the version of the social model was received by advocates of the communitarianism in Africa? Particularly about southern Africa, southern Africans, in Zimbabwe where a large number of disabled people began articulating a critical communitarianism where the interdependency is accepted, but the way the communities themselves restructure is projected."
ELVIS IMAFIDON:
That highlight the issues that develop from the idea of African communitarianism and how it excludes disabled bodies from its scope. That I think is the way to go, being critical of that idea of community and although, although, emphasising the need for interdependence, which is important, which is a very interesting theory from African thoughts, that we are all interdependent and all a community of selves.
While emphasising that with most, we ensure that that interdependency is exclusive and if it is not then we need to approach it critically and deconstructed and reconstructed in a way that makes it more inclusive. For persons with disabilities.
OLUFEMI TAIWO:
This next question is from Belinda Hall, which I think presses on may be a problem with this approach to communities, or complications. Belinda Hall says I am drawn in by the small size of the communities to which we have responsibilities, for which I understood correctly, sometimes the claims are more responsibilities of where pupils African communitarianism help to emphasise how we can work in a diverse context to reduce the size of our communities.
ELVIS IMAFIDON:
Yes, that is an interesting question, I am just looking at it again on the screen. To see how to approach it. It just disappeared, hold on. Can you help me with that again?
OLUFEMI TAIWO:
I will put it in the chat. Sometimes a responsibly feels overwhelming, does communitarianism help cut that down to size. How can we reduce the size of our communities in a positive way.
ELVIS IMAFIDON:
If I understand the question correctly, I would say, African communitarian tautology does exercise our responsibility in making sure we are responsible to give asset of persons and sometimes this is in a negative way, because it would mean that we would then on that basis not want to fulfil our responsibility to others that do not fit within that communal structure.
I think, I think the issue of moral responsibility, the burden of care that comes with it, predominantly an African structure, is one that in modern African states attend to abuse, because for example, within an African state like Nigeria, or South Africa, we know government officials know it, that we have this moral responsibility to our king, our immediate community, which is why for instance you may not have very many in the way you have in the West.
We know it is our moral responsibility to care for our parents to take care of them and not send them to a nursing home. In that sense, we then have a lot of body of care which the state tend to shy away from and push to the community to care for those within that community.
Therefore it falls on an individual together the mum, the dad, much more than the state. The state then simply stays clear and the embodiment of care then falls on the individual and they fulfil that responsibility, it makes it even more difficult to accomplish.
If the state plays their role in caring for the community, the care is reduced with those in the community and then they are able to care even more better than they already are, because it is now a shared responsibility, rather than just the individual wearing all the responsibility for the community.
OLUFEMI TAIWO:
Thank you. Let me see. Who do we have time for? So in the chat… Superior arse "what else within your community philosophy can we use to further philosophies, do you need concepts from philosophers?"
ELVIS IMAFIDON:
There are various constructs that can be provided. For instance, there is a sense of what obligation to all the persons. I see within the African community is the concept that shows that we have obligations to other persons and that we owe them, we have this duty to care for other persons. I think if we construct it, they would go a long way in ensuring there is an inclusion within the African system. In my culture we have a term of the stranger.
The whole idea around the stranger, or one who is different, often carries with it the ability to care and be hospitable towards a that stranger. Philosophers have the duty to bring this to the fore and make it more accessible in terms of their meaning and how we relate to one another.
OLUFEMI TAIWO:
Thanks a lot, I think that is all we have time for, just in the interests of moving the conference along. I wanted to thank Elvis and thank everyone else for coming.
ELVIS IMAFIDON:
Thank you.
(Applause)
JONATHAN WOLFF:
There are only a small number of us on camera to applaud, but I'm sure everybody else is. Thank you very much for sharing, we will have a 10 minute break now. We will come back with Johnathan Flowers presentation. I think, Jonathan, you are with us and Zara, you need to come into the presentation.
Thank you so much and the captions can go off now until the presentation start up again in 10 minutes time.
ZARA BAIN: Does Jamie have a preference?
SPEAKER: If you are happy to introduce, we can go from there. I will start recording, you can go after that. Give me a thumbs up or something Jamie. Perfect!
ZARA BAIN: Thank you for joining as everybody, my name is Sara Payne, I'm going to be sharing this wonderful session, we are looking forward to a paper from Doctor Jonathan Flowers, and the topic of this panel is going to be COVID 19 and the this inheritance of ableist world, so Doctor Jonathan Flowers in a big thing assistant professor in the Department of philosophy at Worcester state University, in Worcester, Massachusetts, USA, and specialises in the American pragmatism of John Dewey, East Asian philosophy, and Afrikaner philosophy as they intersect with applied to disability, race, gender, psychology and popular culture. In addition to his scholarly work, you can find his writing in The Conversation, the Chronicle of higher education, and on Twitter on (inaudible). So I think Jonathan is going to share some slides with us and we will take it from there! Jonathan, if everyone can join me in thanking Jonathan, thank you so much, we are looking forward to your talk!
JOHNATHAN FLOWERS: Thank you! This talk will seek to re-situate their presumed accessibility gains that have emerged in the wake of COVID 19, not as gains for disabled people, but as products of a world that is prepared for some persons and some bodies, not others.
Thus I believe more productive approach to understanding the sudden possibility of impossible accommodations would be through Sarah med's treatment of the inheritance of the world, and how inheriting a world places some objects in reach, while denying access to other objects. In this view, ableism as an organising force in the world serves to determine what bodies can and cannot do, by (inaudible) the words -- always prepares the world to some bodies and not us. Thus I would argue, the previous impossibility of the current widespread accommodations was due to the fact that Iraq ways that academia and society broadly was a world designed to be inherited by somebody's are not others.
So Sarah Ahmed in a phenomenology of whiteness begins with orientations as a precursor to inheritance. For Ahmed, the history of colonialism serves not only to organise the perception of bodies in the world, but the world into which these bodies emerge. Drawing (inaudible), Ahmed presents a racialised body as a product of historical colonialism to remake the world in the image of whiteness, history that serves (inaudible) bodies prior to their arrival.
As a result, the world we inhabit becomes a world that is prepared for some bodies and not others. Crucially, not only is this world made white by colonialism and places somebody is in reach and not others, it also structures how bodies take place through the imposition of the history of colonialism. The history of colonialism therefore allow some bodies and not others to be at home through the ways that it supplies the conditions for how we inhabit the world. Thus, farmers, for Ahmed, race becomes a social as well as a bodily given, for we receive from others as well as history. Despite being an inheritance, Ahmed does not redress, white specifically, as a reachable object. Rather, Ahmed's point is that whiteness is a mode of orientation, a starting point from which the world unfolds, and such the history of colonialism and whiteness as an orientation search to determine which persons have each for which objects in a world made white. Whiteness like the well structured by colonialism is an inheritance that can be taken up by some persons and not others, and as such allows the right person to extend their body through space in ways that other people cannot.
Put another way, to inherit whiteness is to inherit a world that is prepared for the arrival of the white person – a world that is familiar to white people, and the world that is comparable for white people. It is a world that does not resist the actions of white people through (inaudible) because of the ways that the right person fits into the world. Now to fit into a world that Ahmed is to inherit a likeness to the world, a familiarity with the world in the sense that white people understand the world because it is like them. Familiarity, on this view, is an effective proximity of objects and bodies to one another. Uses the metaphor of peas in a party describing the ways that objects are shaped by the ways they suggest based. Another way, insofar as brightness is inherited as an orientation, is inherited as an orientation towards, proximity to, other things that emerge as white through the effects of the history of colonialism.
Trust Ahmed, we inherit proximity is and thus orientations are the product of entering into a familial space as part of a new generation, such an inheritance in turn generates lightness. In context of a world made white, inheriting the orientation of whiteness generates a lightness towards the world which enables the right person to fit into a world that is prepared for their arrival. In keeping with the familial metaphor, the white person emerges not only into a world, but into the familial space of whiteness.
So as with Ahmed, I begin with the concept of orientation and lightness as crucial to understanding how the world is disinherited through ableism. Again, like Mr Ahmed enables familiarity through family resemblance to the world they inherit. Our abilities also inherited. Mobility is a way of being at home in a space, including institutional and academic spaces. Abilities also an orientation we inherit; like whiteness, ability of a starting point from which the world one fault, put some objects in reaching with audience bodies in space.
On this view, ability like race becomes a view of what is in reach, what is available to perception, and for bodies to do things with. Insofar as ability structures how bodies do and do not fit in with the organisation of the world and they can reach, my use of bodies here is specific. There are times, places and spaces where disabled people simply do not fit into a space organised for us, and objects are placed out of reach – literally – and as noted above, a space that is not organised for us it is space that is not prepared for us. That is not prepared for us, the space that cannot be taken up or inherited by a disabled person.
A world organised by ability is a world that this inherits disabled people. As orientation, the inheritance of disability as a way of inheriting a world that is familiar, and showing a familial likeness are resemblance to the world. Garland Thomson offers a crucial insight into familial likeness and this inheritance, and I quote at length, 'the narrative of likeness is crucial to group unity, fractures critically with the arrival of disability to a family or circle.' This does not mean that disabled people are unloved or unacceptable within families or communities, but it suggests another way that congenital or early onset disability can be understood as some version of wrongness, often a benevolent wrongness, because it violates the anticipated continuity of sameness as nondisabled status within families.
So the anticipation of continuity of sameness for Garland Thomson functions in similar ways to the family line biomed. The family line is the protection of the nuclear family as it presupposes a continuity of structures that came before it. Structures that are predicated upon an assumption of heterosexuality, since sexuality, as essential for caring for the familiar structure. As above, the disabled child fractures the line projected by this assumption is ability, the assumption of normalcy. I tried that this initial wrongness makes clear the thoroughgoing structuring of the world by ableism insofar as it projects a line of wrongness that serves to structure the disabled person ongoing interactions with the environment such that some objects are placed in reach and out of reach. Someplace accessible and inaccessible through the organisation the anticipation of continuity of sameness bodies with space.
The depth of the effects of this anticipated continuity sameness is made clear in Mark Johnston's engagement with architecture in the ecstatic, the bodily art. The system disinherit disability. The nature of our bodies and brains perceptual apparatus, and neuro processes, our motor programs engage is an interactive pattern and structure of our environment.
With this view, the way that we engage with the environment through our bodies structures how objects provide the users. Moreover the meaning of the object becomes clear through the ways that the object in the space allows us to transact in a specific way. This is crucial with Johnson's view on architecture and displaying in the following.
My hypothesis is that architectural structures are experienced by humans as both a sense giving and signifying. That is architectural structures prevent a first with a way of situating ourselves in, being at home in and making sense of our world. Second, they provide physical and cultural meanings.
Architectural structures are significant with the way that they enable our flourishing as being meaning seeking creatures and the way they allow us to be at home in our environment.
Architecture forces a sense of being at home, only insofar as the architectural structure is familiar to us, or affords a sense of likeness to the organisation of our bodies.
Here, familiar once more encompasses a sense of nearness, of proximity to an object. It is as proximity the supplies us with the implicit knowledge of how to navigate the space. While this proximity is shaped socially and culturally in so much as we are likely to question and situate ourselves to our likeness to the structure and those instructed it. We can become familiar with the structure itself.
Abel is on the other hand, disappears this is in the familiar and disinherit the ability to fit in. This observation is not new, Thompson who sites the first of this as a misfit.
A misfit occurs when the environment does not sustain the shape of the culture that enters it. The dynamism between body and while that produces, that produces misfits, comes at the spatial and temporal points of encounter between a dynamic, but relatively stable bodies in environment.
Built and arrange space through which we navigate our lives offers to majority bodies and create misfits such as people with disabilities.
Galan Thompson offers a crucial demonstrating of the hypothesis regarding Aga Church of stop namely in so far as the built environment takes the able body as its starting point. That environment will consistently fail to sustain the disable bodies that enter it by projecting their successful navigation of the space. Here we should understand the shape inflation of the body in space to understand the ways that body can reach for objects, or the ways that the body is orientated for away within the environment.
Richard Johnson notes, provides cultural importance is that are meaningful for flourishing as meaning seeking creatures. That is the anticipated continuity of sameness insomuch as it assumes that continuity, or likeness of bodies to one another enables the capacity to fit in. Replacing a reach although structures of society predicated upon the assumed continuity of sameness.
Thus far, that is inheritance sketched has been grounded in the built environment and the embodied likeness to the built environment. This does not exhaust the ways that world is organised around a blaze, disappearance and disabled people. Whereby such goods are produced as one such object, in so far as the organisation of the discipline this inherits disabled scholars with the right to participate in the development of human knowledge and meaning making.
It is a well-organised and centring around a blaze, doesn't benefit people of the built environment, it rids of the environment to serve to organise the space of the Academy and how it is produced.
All of the above point to a world made inaccessible through its organisation around ability. We have all of the preceding discussion also pointing to the way that institutions are made inaccessible through the organisation around a blaze. Here are some far as I've been speaking of institutions, I'm speaking specifically of educational institutions in the US American contacts.
The framework supplied is flexible enough to apply to a broad class of institution. Briefly, as it is continuous of the cultures that reduce them, the world organised around ability would produce ablest institutions as in effect, not only of the continuity of the institution of the world, but as a result of how that continuity restricts and can and cannot participate in the space pharmaceutical nanoscience -- in the space at the institution. Cannot have the institution as a given.
An institution takes shape through the repeated actions and decisions of those who make up the institution and thus providing with its direction.
To this end, the inaccessibility of an institution, more than being in effect, or aspect of the continuity institution in a nameless world as a result of a history of decisions made to keep able is in place. Another way he was allowed into what space structures how the institution appears just as much as who is not allowed in to what space.
Moreover, how one finds themselves in the space of the institution is also subject to the logic of likeness. Describe previously.
An example, the the concept of fitting in education, is connected to educational likeness, scholars through academic pedigree, but upon their very family resemblance indicated above. That is amongst the understated measures of who can fit in a department, or institution is how the candidate can fit into the shared social space. To this end, Ahmed Estates "the very desire for a shared social space can be a desire that restricts to human institutional spaces open by imagining a social space that is not open to everyone. The likeable candidate we would like to hang out with might be determined as a relation of likeness."
With reference to leisure spaces, habits are revealed in casual and informal conduct. In so far as much as disability restructures spaces, disability becomes the inability to fit into the department, resulting in the disabled candidates being a bad fit for the Department and the institution. The limitation on how social space does or does not enable the candidate to be part of unity and share a likeness with their colleagues, shares and serves as yet another way that Abel is disinherit disabled persons.
The functional remedy to what has been described is through the institutional structure of accommodation stop Thompson describes this as the most productive way this time and place. In most present by appealing to the logic of the right disabled person to be given equal opportunities as assistance in logic that requires the force of law and intended institutional structures to make clear. What is valuable for their present discussion is the word "accommodation." Implies that the opening up of the institution and notes on discussion of diversity.
The right to be accommodated by the University under law, while the institutional language often instructs members of the institution to request accommodations, in most cases accommodations are experienced by the institution as an ease position upon the institution. It is experience as a demand. Moreover this demand must be justified to the institutional process of accommodation, which require the disabled person to articulate their request to explain themselves in the appropriate language to enable the smooth circulation of their request with the institution itself.
A paper trail must be established and this must be presented and the expense of disability must be legitimated by the institution itself. Only then will the request be granted, or the request for accommodation in this way, is thus a demand. Interpreted by disabled person, which means there will against the organisation and by the institution is interpreted as such through the requirement that the disabled person again explains why they wish to propose their will upon the institution. While this position should be treated as legitimate.
The very process of accommodation says to reveal the inaccessibility of the institution, while simultaneously transforming the disabled person into a problem for the institution or the organisation.
Here I would like to turn to the institutional responses to the ongoing COVID- 19 pandemic. As a result of the ongoing COVID- 19 pandemic, accessibility mechanisms was deemed impossible have not only become possible, but had become commonplace a virtual conference, or meeting surpass the physical conference and social distancing becomes the new normal.
While it might be easy to hail the new normal the spread of the conference as a potential victory for accessibility, I disagree. It is my contention that the sudden possibility of a possible accessibility accommodation is a result of the expansion of the world organised around ability, in response to a situation which has placed out of reach at the world that ability had made and capitalised for some bodies and not others. In short, the accessibility accommodations, like the one that enables our conference, had very little to do with enabling access.
They have everything to do with preserving the existing stabilisation of our world. In a previous discussion, the structure of accommodation serve to open an accommodation that is unacceptable to some bodies and not others. In the wake of COVID- 19, institutions that were once selectively accessible had become universally inaccessible by universally inaccessible, I mean that the conditions of the institution are such that the institution cannot be organised in the same way.
Put another way, as an institution that continuous world from which they emerge, they are also part of the will be discussed previously. COVID- 19 has created a partial restructuring of the world, it is also restructured the ways that the world can and cannot be taken up. To be clear, the threat of the virus which itself, I may argue is around of her disability has rendered whereby institutions limit who can and cannot participate in the institution by making the institution itself a threat to its participants.
Put simply, COVID placed out of reach the world structured by Abel is, because of the threat it posed to the body's privilege by a realism. Moreover, the consequences opposing the institutions out of reach resulted in the institution inadvertently providing more modes of access to the world organised by abelism.
People now have access to those tables, those spaces and can help direct the organisation of the institution in ways they were unable to participate in. Previously.
The demand to enter the physical or institutional spaces have become pleasant, because of the new normal. However, these new accessibility measures themselves are not accessibility measures. They are an extension of ways that disabled persons are disinherited by a world organised around abelism.
By this I mean that these accessibility measures themselves are designed to modify a world organised around abelism, as such of the world can continue to be inherited by people who share a life in that world.
From my lived experience with ADHD, the majority of the accommodations I would be granted were involving the organisation of the physical space of the institution. Test taking areas, additional time in that quite space the examinations and access to accessibility devices within written examinations.
The current pandemic context, I would not be guaranteed my degree of accommodations due to the limitations of the institution to ensure accessibility because the space of the institutions no longer is determined by the physical boundaries of the institution itself.
Another way, the institution could not organise a quite test taking table for me, I would have to do so myself. In this way, I be forced to rely on the various structures impaired by my disability to accommodate my disability.
In so far as I would have to plan and organise my own accommodation. More broadly, if we turn our discussion of institutional diversity into the process of making diversity part of the repeated patterns of action of the institution through the establishment of offices of diversity and other institutional mechanisms.
The way in which COVID- 19 accessibility measures are extensions of the world organised around a abelism some, become one and clear. They force the opening up of the institution to disabled people, the provision of access to disabled people on this provision of access is contingent upon the organisation of the space at the institution. If the institution itself is rendered inaccessible to everyone, so do do the accommodations that are intended to enable access to the institution through its arms.
In short, access to the ability to make the institution more accessible is consequently inaccessible as the organisation of the institution itself has shifted. In this, the view does not only of the institution, you'd normally maintaining disabled people, extends that this inheritance to a very structure that once provided access
To be clear, the preceding discussion is focused on the ways that disabled people are disinherited by a world organised ableism, it is incomplete in some respects. Crucially, while Ahmed presents this as an orientation and not an object of each for, the orientation ableism specific to the medicalisation of disability physicians ability as an object to be reached for through a variety of technological, scientific and increasingly eugenic projects that predictability as an object to be granted through techno social advancement.
In this, ability is presented in line with what Ahmed calls a happy object, on object that carries with it the promise of happiness over the unhappiness of the history of disability. Histories which challenge ability as a happy object threatened the happiness to be taken in the able-bodied mind. In this respect, this talk contributes to the unhappiness of a value disability. Additionally, it is not the case at all disabled people are disinherited equally. I meant articulation of a world made by by colonialism which consequently limits the ways that the world can be taken up and the limits by which bodies can be extended throughout the world has important implications for this inheritance of disabled people.
To be clear, order the consequences of a world made right by colonialism is the disability itself is made right, to the extent that the embodiment of a disability by people of colour, does not possess a likeness are a familiarity to the embodiment of disability by white disabled people. I disabled people of colour may not be recognised as disabled. This is not refer to the diagnostic criteria disability, but the weather racialised perceptions, how we do recognise and do not recognise other people are disabled. In recognising the proceeding, part of that is inheritance of disabled persons of colour is not simply from a world organised by ableism, but a world organised by colonialism and a community organised around embodiments.
Insofar as disabled communities themselves may be structured by colonialism, the ways they recognise and acknowledge how disabled people are disinherited but equally will serve to maintain the image of disability in line with the logic of colonialism. If the image of disability emerges from the activities of colonial white bodies seeking to prepare the world, the world which will be inherited will be a world of colonial disability, world that takes the right experience of disability as a starting point.
It is a world that I could not, and would not want to inherit. Thank you.
ZARA BAIN: Thank you very much! That was fantastic, I really appreciated that, we have got a number of questions, I am so sorry if I'm looking confused it is because I have to change my screen while I was listening to you. Wonderful. We have got a couple of questions, do send your questions true, let us start with one, shall we? So Benjamin Carpenter asks, mirroring Ahmed is concerned that we should not reify institutions, is there not a further concern with reifying any notion of access? What do you think about the difficulties of pursuing a kind of universal accessibility, in brackets space that is open to everyone, given the different kinds of disability may invite more or less distinct accommodations?
JOHNATHAN FLOWERS: So yes, I agree that we should not reify access, and we should treat accessed dynamically as a responsiveness to the interaction between disabled bodies and the environment. So I agree we should not reify access, but my contingent here is that – insofar as we do not reify access identifier to think about design principles as universal, we need to think about access as, in terms of flexibility, how can the provisions for access and accommodation be structured such that they are flexible enough to be applied within their uniqueness of the particular situation of a disabled body's engagement with an institution?
So broadly, I will say yes, we should avoid reifying access, part of the case in is what has happened in the description of covered 19 modifications, to institutions, these modifications are routinely described as accessibility modifications, which in turn reifies and re-centres the understanding of access around disabled bodies. So yes, I generally agree we should avoid reifying access way to do that is to treat access is a dynamic and flexible concept, even among folks with diagnostically identical disabilities. Accommodations do not function in the same way. The ways that my sisters ADHD is accommodated are not the ways that mine is accommodated, they do not work for both of us equally, and so we need to bear in mind the dynamism of body environment and (inaudible).
ZARA BAIN: Thank you very much. That's really interesting, because we always forget the disability is one of the most heterogenous spaces, and so even universal design for learning – we should, we shouldn't lose everybody, we shall ensure that universal access of the possibility. Next question from Rhea Williams, I'm thinking a lot about how the rapid shift to online (inaudible) has enabled organisers to pick whatever platform seems most convenient without any thought of access. They are so busy patting themselves on the back for their ingenuity under pressure, that any request for access, speech to text transcription for example, and it was fresh hostility. Disabled people so used to begging for crumbs, sizes they we become disinherited from our Lord accommodations as they take up institution. The practices of resistance to note is happening right now? How are people – like disabled people forging their collective inheritances, and is all we have at this point each other? How can we transform the world beyond our chosen communities?
JOHNATHAN FLOWERS: I'm going to appeal to (inaudible), Jimmy says democracy, in order to instantiate a true democracy, the instantiation of a true democracy requires the fundamental restructuring of our social, cultural and moral organisation, right? So I tend to take accessibility the same way. If you wanted a truly accessible institution, then we have to so thoroughly restructure the institution in ways that make folks who are at home in institution profoundly uncomfortable.
Now to respond to the question directly, yes, insofar as I have said that the accommodations for, or the accommodations that have emerged in response to COVID 19 are not really accommodations, they are merely the expansion of the previous world in a response to an existential threat, generally I would agree, all we have is one another, and would have the neatest ways to – would have the strategies of resistance that I see emerging consistently is the non-stop demonstration of a hypocrisy of saying 'the virtual conference or their remote learning situation was an impossibility to deploy at scale prior to the central thread'. That is, shaming the institutions into recognising the ways that they traffic and trade in hypocrisy, not merely materially, but conceptually, right? If an institution claims in its mission statement that it is committed to providing access to all, and yet it is certainly possible to do so when a majority is now under threat, that puts the lie to the claim of access. So yes, we have is one another, insofar as we should think about effective strategies of resistance, shaming institutions into doing what they were supposed to do I think is one of the more effective strategies aside from simply tearing things down.
ZARA BAIN: Chance would be a fine thing, thank you so much. Another question here, with regard to architectural structures, as both Thanksgiving and signifying, I question our intersection arty in regard to the University building of our workplace. What back for the main entrance to become accessible, rather many people with disabilities only having the option twitter to the back door – and grading, because I'm disabled and user mobility scooter, so what is familiar to me – by coincidence, that's totally gutted the room. At the same time cleaning and security staff tend to also enter the building through the back door. Is claiming access to the main entrance the best way to go, or should we somehow claim higher status for backdoor entrance? The sense of being a specific question, the question of how would you reflect on this case? This very stereotypical manifestation – and it is a very good example actually, of the way in which, what wheelchair user mobility aid access to be quite precise looks like to most universities, and other buildings, is that you go into the staff, you know, the janitor entrance, and there is nothing – you end up with good relationships with cleaners and charities because those are the people who share your entrances and your lift, typically in my own history, but is that I get a case that you speak to the kind of issues that you are raising?
JOHNATHAN FLOWERS: Yes and no, my reflection on this, I think we are asking the wrong question, it is not 'is claiming access to dimensions the best way to go, or should we elevate the back door entrance' – it is right is the entrance structure in this way in the first place, right? It is the question of, should we build more doors on the (inaudible) so more people can get in, or do we simply restructure the forum so that this is not a question we are even asking, but this is a very radical response to the question, right? To reframe the notion of entrances and what they look like.
Now, in more practical response I would say is both (inaudible) so claim access to the main entrance, to say, claim access to the main entrance to say re-emphasise the participation of disabled persons in the academic community, but at the same time, points out very loudly the implicit marginalisation of the back entrance, right? Insofar as some people are relegated to the back entrance, the institution is making a statement about how and where one can enter the institution.
That is to say, both and, right? Elevate the back door entrance, and claim access to the main entrance, but also challenge the notion of why these entrances are privileged in the first place.
ZARA BAIN: Fantastic, like you so much. OK, let's find another question. Before we go, I'm going to take chairs privilege actually. There is a thought there that seems to track what you are saying about the accommodation model, there seems to be a parallel between the doors – the goal seemed like a nice metaphor for this idea, we really want you would have long as you come into this retrofitted way, and then, if we are thinking about our responses to it, we really do have this like OK, going to amend the existing infrastructure, which is the accommodation model, are we going to build new infrastructure that already anticipate certain kinds of bodily difference, other kind of range of experiential difference as part of your community to start with. Great, so we have had some questions – unless you want to comment on that.
JOHNATHAN FLOWERS: No.
ZARA BAIN:
This is an ominous question, there have been questions asked on COVID- 19. In general can you share anything about the fate of COVID as a manifestation of ableism. She have any advice to you is to push back institutionally as faculty, perhaps in regards to making disability, can you maybe discuss university accessibility centres.
JONATHAN FLOWERS:
OK, that is a long answer. So first, the majority stop if you read the reporting on the effects of COVID- 19, beyond death, taking death of the table here. It is usually articulated as imperative, people who survive COVID- 19 have memory issues, fatigue issues, have difficulty breathing. They have other kinds of embodied differences that make inheriting the world as traditionally organised far more difficult, right?
In so far as, we talk about COVID- 19, surviving COVID- 19 as a kind of, as a kind of fear of disability. We can talk about COVID- 19 and the fear of COVID- 19 is a fear of becoming disabled. Of losing the primary mode in which we inherit the world.
To answer the second part of the question, I mean we need to take seriously any student reports, or any student report about other faculty not accepting, or granting accommodations even without limitation presented. We need to treat it as the tip of the iceberg in regards to a broader problem.
We can take up this understanding, the hypocrisy that I pointed out earlier as a recognition that it is not impossible to provide disabled persons with accommodations if they ask. It is just a result of institutional and willingness.
As faculty, we can repeat over and over and over that it is now possible to do things remotely, we simply were willing to do so previously. We can rely on institutions figuring out ways to unmake disability and unmake offices of disability, as are such that they are not entirely reliant upon the organisation of a pre-COVID world to provide the accommodation.
So, I have an ever growing archive of the ways that institutional accommodations have failed students, up through higher education and most of it in my view is as a result of the ways that the accommodations have been supplied by the institution are grounded in a world that is sustained and maintains the institution and a world that no longer exists. For the foreseeable future.
What faculty can do is to encourage more demand that the institution take a serious look at the ways that accommodations are provided within this new normal, within this new reality, right? And, to be quite honest. Shame them.
ZARA BAIN:
That sounds plausible. Everybody start shaming your institutions if you are so inclined.
OK, so we have one… How we did for time? I think we are going to take… Do you want one more question on COVID? I would like to move onto something else?
JONATHAN FLOWERS:
I could, if you were talking about that question, I could do that something else.
ZARA BAIN:
"Taking up your excellent point about hope COVID has turned institutions to reorient themselves around continued ableism, how helpful do you think it might be to interrogate how institutional calls for the necessity of maintaining quote on quote core activity have led to frictionless adjustments. That is, does the removal of friction in the face of quote on quote maintaining a core and quite a show that disabled people are fundamentally not part of how an institution imagines its core?"
JONATHAN FLOWERS:
I can give a simple answer, yes. If it is frictionless to say, I want to put frictionless in scare marks. It is a remote faction at the top of the hat, the large amount of friction that emerges in doing so. Putting that
Aside, the speed at which our institutions have shifted to maintain key activities in a remote kind of situation, indicates the ways that disabled people and disability itself is fundamentally not a part of how an institution manages itself.
If it was this easy, why did you not do before.
ZARA BAIN:
Well, yeah because of everything you identify. On the frictionless, that is important to identify, it is about disabled people, not just disabled students. Disabled staff, disabled academics, for all types of reasons, some of whom are high risk for COVID, some of whom are not, some of whom are energy impaired, or the rest of it. If that whole raft, it seems that nobody has taken a break or summer. There are interesting questions coming up on teacher burnout.
Maybe one other question, I would like to thank you so much for this amazing presentation, in terms of disinherited's been unequally inherited through the history of colonialism and racism, you mentioned that disabled people of colour may often be seen as nondisabled, being unlike disabled white bodies in terms of accommodation and access. How would we also bring this into conversation with for instance, what has been said about how race, blackness, specifically is constructed from the outset as a category of disability, both socially and literally impairment through the violence of slavery, colonialism and now racialised behaviour.
JONATHAN FLOWERS:
I can try my lived experience here. Insofar as, in so far as our racial perceptions about how we perceive disabilities of others. In my lived experience as somebody who has grown up with ADHD. The symptoms my disability in a broader medical sense were not necessarily seen as a product of my ADHD, but a product of me being an oppositional black child in a predominantly white setting, right?
Insofar as my distractibility, my impulsiveness and so one were viewed as disruptive. The disruption was not located as indication of disability, except insofar as blackness is instructed as a kind of disability.
In this way, my ADHD was not really ADHD, it was just me being black. It took particular kinds of insistence to receive the appropriate accommodations. In so far as blackness has been historically instructed as a kind of category of disability.
We can think about how the ways in which colonialism organises systems of education, institutions broadly. It serves to maintain the structure, right?
In so far as to say educational. In so far as black Students with disabilities are more likely to be subject to disciplinary action, rather than to accommodation action to stop we can see how the complexion of of blackness and the racial logics of blackness align with, or obscure the possibility of a disabled black person.
It is not simply that a black person has a disability, it is not simply that at black person has a mental health issue, it is that the black person is acting out of blackness and there is no need to intervene, or intervene with the accommodations that are necessary.
Or there is also the sense that the ways that the accommodation structures are in a pattern are not responsive to the cultural inheritances of black disabled people.
ZARA BAIN:
That's a really good answer. I think we may just end, do you want to take my question?
JONATHAN FLOWERS:
I don't know if I…
ZARA BAIN:
We have one minute, perhaps all we can say on this thought. There is a question a follow-up to this question about blackness, which is another one. This does come out a lot in these sorts of spaces. What can people do to break these practices? Someone who is interested personally.
Disempowering practices of the hypocrisy with respect to disability and race together. They want to end on there, Jonathan.
JONATHAN FLOWERS:
Pushback, pushback and all of the ways that are necessary and I think COVID- 19 providers with effective ammunition to do so, when someone says that it is impossible to accommodate a disabled person in a particular way. We can simply say that, well you have accommodated your entire population in this way, what prevents you from doing it again. Push back and keep pushing back, but recognise the picked particular as to ways that the disability transacts of the environment.
ZARA BAIN:
The ways we can understand with reference to your fantastic paper, the whole of the infrastructure, is about infrastructure in other human bodies and disabled needs as opposed to not. I think very sadly we have run out of time. There is so much really important material to talk about here. I think we can all, to our virtual clapping, I would guess to say thank you, very much. Thank you very much, wonderful, we can show our appreciation to Johnathan Flowers. I do not know whether Joe or Shelley are about to pop up on the feed, but I think what is happening now as we are taking a 10 minute break. We will be back.
JONATHAN WOLFF:
Thank you so much Jonathan, thank you Zara, a fantastic session. We are actually taking a half-hour break, so we have had three papers now and we are rewarding ourselves with a little bit of time.
I think what we should do, all of the panellists in a second should turn off the microphones and cameras and we will start thinking about getting back into action about 25 past the hour to start properly at half past. In the meantime, I would like to show our appreciation, or my appreciation on behalf of everyone here that another fantastic session. Very exciting, some questions and answers.
Thank you so much, Jonathan and Zara. My applause again.
(Applause)
Great, we will all switch off and come back on again at 25 past the hour.
Nice to see you, Jane. We have seen how it all goes.
SPEAKER: Welcome back after our break, this morning's sessions were so interesting and so fantastic, thanks again to Shelley and to Jonathan for all of your organisation, it's been wonderful. Jane Dryden, I'm a philosophy professor in South Brunswick Canada, I have interest in the history of philosophy and in philosophy of disability, and I'm interested in the ways in which our ideas of the normal developed a very strange and often ableist ways.
So I'm very happy to be here today. I'm also very excited to introduce Doctor Christine overall, who was speaking as you can see on this slide on ageism, ableism and the power of the double bind. Christine overall is Professor emeritus of philosophy, and holds a research chair at Queen's University in Canada. She was the first philosopher elected to the Society of Canada, and was the 2008 winner of the Society of Canada's gender studies award. Her 2003 book, Ageing, And Even Longevity: (inaudible) won the Royal Society of Canada's (inaudible) medal of bioethics in thousand six. She has published over 100 journal articles and book chapters in the area of feminist velocity, bioethics and philosophy of religion, she is the author of six books editor and coeditor of five, her most recent is pets and people, the ethics relationship with companion animals, so incredibly accomplished, and also – possibly relevant to this talk – the mother of two children and grandmother of four.
Want to remind everyone that you can submit your questions in the chat at the bottom of the screen, also at the bottom of the screen you can see the button for closed caption options. So I think that is everything, take it away Christine. It so much.
CHRISTINE OVERALL: Thank you very much Jane. I want to say thank you very much to the organisers of this very stimulating conference. I'm honoured and delighted to be included in it. I'm especially grateful to Shelley Tremain, who has been a wonderful source of support and inspiration to me in the writing of my paper.
I have learned a great deal from reading Shelley's work, though of course any weaknesses in this paper are entirely my own. Discussions of the moral and political significance of age, of the ethical and social policy aspect of ageism, and of the connections between ageism and ableism are shockingly rare in the discipline of mainstream philosophy.
As Joe Michael Reynolds remarked, in philosophical research more generally, there has been relatively little work on ageing, and even less on disability and ageing.
Indeed, in the philosopher's index, there are only 35 entries under 'ages and', and only two of them involve a direct link visibility. The fill papers.org sites purports to have 72 citations, but many are listed twice. And notably, some of these papers are defences of ageism.
Just three of the papers purports to be about ageism and disability. This paper is a small effort to partly fill in this regrettable lacuna in the philosophical literature. For all the current cultural fables about the joys of getting older, it is evident that ageing is still made into a social liability. This social liability sets in early. By ageing, and old, being old, I just mean living past the age of, let's say, 59. That is, in European and North American societies, to be old is to be aged 60 or more.
One could quarrel with where I placed it. Why not 65? 69? But the fact is that being considered old still sets in fairly early. Indeed, the younger a person is, earlier they think oldness arrives. And the social response to COVID 19 has certainly made age 60 especially salient.
Ageism is not merely – sorry – ageism is not merely biased marginalisation and/or mistreatment targeted at individuals or groups of individuals on the basis of their years lived, perceived years lived. Ageism is a system of oppression comprised of social practices and institutions that identify and constitute having lived longer than 60 or 65 as individual and social problems.
For purposes of my paper, I will give a partial definition of being disabled as follows: - sorry Jane, could you just need a microphone? Thank you. To be disabled is to be perceived and treated as having a physical, psychological or cognitive feature, set of features, condition that is valued negatively as varying from the supposed human norm. As being incomplete, abnormal, dysfunctional, or defective.
We all know what that norm is. A body that is white, slim, often athletic, belonging to a person with a particular kind of cognitive or psychological functioning and who is heterosexual, gender-sex congruence, middle (inaudible) class, and above all young. Although perhaps not too young. Culturally speaking, neither a one-year-old 12-year-old constitutes the norm.
This feature set of features condition, like all features and conditions of human beings, may or may not have been caused by other human beings or social institutions. It may or may not involve pain or suffering for the individual themselves, and it may or may not be valued negatively by the individual themselves. Indeed, the individual may or may not actually possess the feature set of features our condition, that is valued negatively as varying from the supposing human norm.
In what follows, I argue for two main claims. First, that ageism is disabling. And second, that one major mechanism by which ageism disables is by means of double-blind, which carry unavoidable penalties and which negate the very personhood of the individuals actively are targeted.
In terms of my own authority to talk about these issues, let me just say that I am indisputably old and that I have been seriously disabled at several points throughout my life. Though I have often been expected to 'past the normal'. -- Pass for normal. To remark that all the people and people with level disabilities may often be treated similarly with disrespect, marginalisation, isolation, denial of autonomy, physical and psychological violence, in other words with ageism and ableism, is not new, people who are labelled disabled and people considered old may similarly be considered expendable.
But to me, the relationship between age, ableism and ageism is more complex than just similarity. In one of the few philosophical papers that explore the relationship between ageing and disabilities, Reynolds referred repeatedly to the supposes phenomenon on of becoming disabled through ageing, becoming disabled due to ageing.
But I think the idea that we become disabled simply by virtue of getting older assumes that there is something biologically inherent within living longer that inevitably causes a supposedly deterioration of facilities. This assumption makes edging and being disabled merely a matter of one's innate, supposedly nonsocial biology. This view fails to consider the social context in which human beings age.
Instead, I suggest that the ageing – ageist conditions of ageing, the material, cultural, psychological and social environments in which people grow old are disabling. Ageism is disabling in two ways. The first work involves categorising old people as disabled. Thanks to ageism, various features or conditions often, but not always, possessed by ageing people are thought to be possessed by us including but not limited to such features and conditions as grey hair, lined skin, a particular pace of movements, particularly of speaking, a particular posture, balance, or site or hearing, are perceived and treated negatively as varying from the supposing human norm. As being incomplete, abnormal, dysfunctional or defective.
To be old is automatically to be perceived and treated as being in a state of decline and deterioration. But ageism does not only contribute to the perception of ageing persons as belonging to the category of disabled persons. Even more important, ageist circumstances and institutions can cause ageing persons to acquire features or conditions that are seen as varying negatively from the norm. Hence, that's become and are considered to be disabilities. And that often in addition involve unnecessary pain and suffering to the individuals who require them.
The stereotypical features of ageing that I just listed, are not necessarily inevitable expressions of some sort of innate natural revolution. Many of them are required or required sooner, or acquired with more pain and suffering as a result of living in a just society.
As Ashton Applewhite points out, the social conditions of the COVID 19 pandemic have not necessarily made ageism worse, instead they are exposing what being around – what has been all-around all along. Nonetheless, the current ageist social response to the coronavirus pandemic disables a huge swathes of the older population, who find their freedom and mobility Ltd, and their well-being and lives threatened by the behaviour of other people.
Since the start of the pandemic, the treatment of people who have lived 60 years or more has been seriously, sometimes fatally, disabling. To take a particularly egregious example, consider Alessandro and Adelina Sato, aged 92 and 19 respectively. Before the pandemic, active autonomous and social lives at the retirement home, but thanks to the ageist isolation, neglect, separation from family and from each other and even abuse the experienced during the lockdown, their health has deteriorated so dramatically they need round-the-clock care.
Their ordeal included infections, broken bones and cognitive changes as a result of the isolation. When reunited with his spouse of 64 years, Mr Busatio no longer recognised her. It is predicted that neither one will regain their ability to walk. Thus, ageism disabled them.
As Margaret Morgan stresses, quotes, being older is not by itself a death sentence from the virus. Some who survive are over age 65, even over 100 – the super survivors, like sociocultural who also survived the 1918 flu. People over 65 are not a group doomed to die by our physiology.
Nonetheless, the logical outcome of disablement through Ageism is to make old people disappear through a willingness to allow, or even encourage us to die.
In a presentation I gave in the before times, back in May 2019, with the title "is ageing good?", Ever convince old age is as bad as the serotypes suggest, the sensible thing would be to reduce the number of old people. The method can include everything from reducing the quality and availability of health care, nursing care, housing and nutrition to actively encouraging people to end their lives."
That is what I said pre-pandemic, little did I know that less than a year later, a version of what I regarded as the Orwellian response to the supposed burden of old people would unfold via the pretext of the virus.
Well before 2020, this idea was already a threat in public and academic discourse. For example in John Hardwick's idea that older people have a "duty design" -- duty to die. When before they become a burden.
The pandemic has made it even more explicit, for example, Dana Patrick the Lieutenant Governor of Texas, infamously advocated that "senior citizens" should be willing to die for the sake of the preservation of the American economy.
Toby Young, a British right-wing economist argued at the beginning of the pandemic lockdown that "spending £350 billion to prolong the lives of a few hundred thousand mostly elderly people is an irresponsible use of tax payers money."
Among academics, this idea is also not uncommon. It has been suggested that the use of triage in apportioning pandemic healthcare would mean that age is used as "and accepted criterion" for decisions about who lives and who dies in the pandemic.
In short, sacrifice the older person, he has already lived his life. More than one commentator has pointed out that this cabinet approach is a new form of eugenics, assessing old people on their supposedly value and capacity to be productive.
Being old, therefore having lived a certain number of years, whether it is 90, 80, 70, or 60 is the flawed self. The fatal characteristic that makes us destined for death and moreover responsible for debts.
I'm going to turn to the second major part of my paper to discuss how Ageism disables via the use of double bind.
Almost 40 years ago, philosopher Marilyn Fry wrote "one of the most characteristic and ubiquitous features of the world as experienced by oppressed people is a double bind – situations in which options are reduced to a very few and all of them expose 12 penalty, censure or deprivation."
To be trapped in a double bind is to be according to Fry "caught between systematically related pressures."
In the sense in which I am using the term, a double bind is a forced choice between alternatives, all of which carry heavy penalties.
In the case of Ageism, and perhaps in other forms of oppression, though I make no larger claims. Double binds are rarely presented explicitly as such. That is, targets of the double bind are not explicitly told that they have only two options and that each of the options results in a penalty.
Rather, messages about the options come to the individual under various and different circumstances and in such a way that the targets are less likely to be able to notice and understand their relatedness.
The communication of double binds to people who are older is ubiquitous and repeated, in some cases such communications may even seem innocuous, well-intentioned in themselves.
Hence, the situation for the ageing person is likely mystified and mystifying. This fact makes it difficult, or impossible for the target to accurately identify the ageist environment and to escape from it.
The situation is the exemplification of Fry's classic birdcage analogy for oppression in which as prices "each individual wire by itself seems not to limit the bird, but together there is a network of systematic related barriers that make escape impossible."
Being in a double bind means a person cannot win, would have a choice she makes all however she chooses to act.
But double bind having even more insidious and pernicious consequence. Being the target of a double bind means that one cannot fully exist since either choice negates who one is. One cannot be a full person, with agency and intrinsic value, because at the double bind denies them.
An effective double bind makes its target into a nonperson. Hence, while the crudest form of disablement by Ageism facilitates the physical death of old persons, as they argued previously. Ages double binds disable by facilitating the nonexistence of old individuals as persons.
In some ageist double binds, both alternatives are extensively positive. In summer, one alternative is ostensibly positive and one is negative. And in others, both alternatives are negative.
In all of them, the choices always produce penalties. Here is an example where the alternatives are both ostensibly positive.
On the one hand, targets of Ageism are commonly told that older people are privileged to enjoy their leisurely "golden years" without any cares and no longer have to contribute to the society in which they live.
On the other hand, targets of Ageism are told that we can and should continue to contribute to society by doing volunteer work, by caring for grandchildren, vulnerable relatives, or strangers and by our supposed wisdom and insight.
The penalty for accepting the first message is twofold. It means acquiescing in a description that disparages the value of the target lives, if they felt to be of service to others.
It also ignores all those who are not benefiting from a financially secure and leisurely old age and literally assumes that they do not exist.
The penalty for accepting the second message is that it sets very high standards for being personally valuable, the old person must be active, giving, contributing, wise.
Meeting the standards can be difficult, painful, or even impossible. The individual is disabled by this double bind, because one choice consigns her to the category of parasite and the other choice exacts more than most people can do on an ongoing basis.
Whichever choice the individual makes, she suffers an ageist penalty and the underlying of the value of her own unique existence. In other words, neither choice is existentially tenable.
Summer ageist double binds carry a mix of apparently positive and clearly negative messages. Consider for example the often heard compliment to people over 60 that they, "don't look their age." They are not really old. That they could easily be taken for someone younger.
This seems and is often intended to be a compliment, we are exhausted to engage in youthful activities and take on youth associated values.
Targets who failed to act and present themselves as socially young are subjected to overt ageism including questions about their so-called entitlements, complaints about their present or future earning some nurse and the lack of autonomy granted to younger people.
The older people has the seamy choice of on the one hand endeavouring to pass as young and accepting the idea that failing to look and act useful is bad.
Or, on the other hand, refusing to try to pass as young and accepting the Ageism that goes along with it.
The double bind, negate the existence, because she either passes what she is not, a conventionally younger person, or she must accept a view of herself as burdensome and undeserving respect.
In my final example of a double bind, both alternatives are unambiguously negative. On the one hand, people who are still engaged in paid work, past the age of 60, 65 are often told that they are past their prime, that they are selfishly withholding jobs from young people and that they should consider retiring.
On the other hand, old people who are not engaged in paid work are told that they are reliability, a drag on the social support system. Living off state pensions.
It is obvious that both of these two alternatives are punitive, but note also, that each so-called choice working or not working is stigmatised in such a way that it negates who the person is, a person of value, with goals and needs and abilities of her own.
The old individual is disabled by taking away her personhood.
In this paper I have defended two main claims. The first claim is that Ageism is disabling, and that it disables in two ways.
First, by categorising old people as inevitably and inherently disabled, and secondly by causing ageing persons to acquire features or conditions that are seen and treated as varying negatively from the norm.
The ultimate expression of disablement by ageing is precipitating the physical death of the old person.
My second claim is that a major mechanism by which Ageism disables is by means of imposition of double binds. Which always carry unavoidable penalties and which disable by negating the very personhood of the individuals acting whom they are targeted.
While I do not offer any general solutions to these ageist forms of oppression, I believe that they may at least be useful to identify more clearly the specific mechanisms by which Ageism operates. Through its connections to ableism.
This is just a list of the various references that are used in the presentation of this paper. I want to thank you all very much for your attention.
JANE DRYDEN:
Thanks so much, Christine. We have some questions already. So the first one…
"Would you say that Ageism is disabling argument only holds in ageist societies? So in other words, in your theory, would all people still be seen as disabled in societies of cultures that value… Poverty?"
CHRISTINE OVERALL:
I cannot see the question, so I have to follow them from listening to you.
JANE DRYDEN:
Sure…
CHRISTINE OVERALL:
Got it, yes, found it. Thank you. Thank you very much.
As I was writing this paper and thinking about it, I am thinking specifically about the context of North American and European society. So-called Western society. In which I believe atheism is absolutely rampant. It would be a very interesting question for me to know if there are actually societies where there is no ageism, or whether it is simply the fact that ageism takes different forms in other societies. That are not part of the dominant industrial complex of nations.
Filial piety, by itself, I guess I have reservations about that term, because I'm not sure that piety is really what I think would in any way dissolve ageism. I don't want to give the impression that ageism is simply a matter of attitudes. It is definitely a matter of institutions and social arrangements and the physical apparatus that we have to live in, the social groupings that we find ourselves in, certainly there will be possibilities for mitigating ageism in some ways but but I think filial piety would not be enough by itself.
JANE DRYDEN: So the next one, what are some opportunities for ageing people to ally politically with disabled people that moves towards a more just culture of ageing? Without requiring us to -- valour rise ageing as somehow distinct from disability which uplift ageing people at the expense of disabled people?
CHRISTINE OVERALL: That's a wonderful question! So I guess in somewheres I would want… So I am not saying that ageing is disability. I am saying that ageism disabled people. So obviously it is not the case that these two social categories completely overlap, perhaps if we think of them as Venn diagrams they overlap partially but perhaps not completely. Opportunities for ageing people to highlight politically with disabled people, I guess I think everybody should be allying with disabled people, not only ageing people and I also think that everybody should be allies for ageing people. Because the fact is, I think it is important to recognise that just as we all get old, unless we die very early, we are all likely to experience various kind of disability at various points in our lives. Early, late, middle, and so on.
That is, it is hard for me to think of these categories as constituting groups that are completely distinct from the rest of society. That is part of the mistake, I think, because the mistake is to assume that there is a norm, that norm is nondisabled, that norm is young, there isn't really… There isn't a norm except insofar as we insist on treating a certain image as being the norm. But in fact, I think the categories are much more fluid than that, and we go through all kinds of challenges and opportunities in our lives related to our physical and psychological and cognitive abilities that vary, I think sometimes tremendously, throughout our lives. So I guess yeah… I think I will just leave it there.
JENN MACARTHUR:
Thanks! So the next question from the chap-asks people who made possible through ages of – I just got it correctly – people count on themselves being included in (inaudible) all the category.
CHRISTINE OVERALL: Sorry, I can't see – are people who made possible this view of ageism…
JANE DRYDEN: Are people who made possible this you of ageism, counting on themselves being included, also, are the people who are interested in this you are ageism counting on themselves as being included in this category? I think is the question.
CHRISTINE OVERALL: So… Thank you for your question, I have not sure I understand it, this view – because I don't know whether, by this view of ageism, you mean the view that I'm putting forward the view that I am trying to analyse that I find in society, so-
JANE DRYDEN:-, If you are there would you be willing to post a clarification of your question the chap? Thanks!
CHRISTINE OVERALL: Is it coming through?
JANE DRYDEN: Ivan has responded, maybe while we are waiting for the qualification type and question our move on to Melinda's question which is next, because there are about 30 minutes left. Melinda asks, you mentioned that the double-blind cannot necessarily be seen by the victim, so what would philosophical work that D familiarises the double-blind look like?
CHRISTINE OVERALL: So this is – thank you – this is something that really is striking to me, I am actually somewhat persuaded that double binds may operate in terms of enforcing and expressing a lot of different forms of oppression, but that they are very difficult to see and that is part of their effectiveness. So that it is not as if any one person or any one institution or organisation comes along and says 'you have this choice and you have this choice, they are both bad for you', so I think – I don't, my own paper is an attempt to expose the nature of the double bind as it operates, and I believe that as people… I am not sure what more to say, other than what I have tried to model here, that if we can bring into full view the two arms of the double bind we are most – more likely to see how preposterous it is and how the gating of the individuals personhood it is, so the lender, I am not sure what I can say that is helpful in response to your question, other than to urge people to look for the ways in which there may be double binds expressed with respect to race and gender and sexuality and class, so – I don't pretend to have any kind of expertise about any of those, because I have not thought far enough about it, but I am kind of convinced that this may be a very dominant form of messaging that is coming to people, and it is coming to people in the culture, and part of its success is its mystifying nature. Sorry I can't say more about that.
JANE DRYDEN: There is a comment from a lender in the chat that is helpful. Has clarified little bit more, and he writes in respect of this sort of view, specifically the view add life to your work, it is a negative context, just as a reminder –
CHRISTINE OVERALL: My view? OK. Our people…? So… Seems to me that… Well, again, I guess I just… I am sorry to hesitate, I'm just not really sure I understand the question, I think it is important for old people to be aware of the functioning of ages, to not see it as benign, did not see the ways in which we are condescended to or counted out or omitted or have our autonomy compromised, we can see that as benign or simply well-intentioned, but see it as an insidious way to make people disappear. Either physically or as persons.
So I think it is really important for people to recognise the significance of the operation of ageism, but Ivan I am very sorry, I am still not sure I entirely understood your question.
SPEAKER: Define a clarify, I think what he's getting at is that the younger member of society who might help advance this idea of ageism – are they themselves then thinking that when they are older they will fall into the category of people who are adversely affected by ageism?
CHRISTINE OVERALL: Thank you Katie. Let me just say, I… That is a good question. It is important for, as I said earlier, for people to recognise that if they do not die, they are going to become old. That means, they are going to become targets of ageism. Whether they like it or not.
But I do not, personally believe, that ageism is only ever directed at old people. I think there are particularly egregious forms of it, including the tendency for example to see everybody from let's say age 60 to 100 – that is a 40 year span – as all being the same. As if we are all alike.
But I believe that ageism is also targeted at older ages, and the most obvious example is I think children, under the age of 10 or 12, and I think that form of ageism is also harmful to children. That they are seen as not fitting the norm, as being educated and shipped in order to become the norm, as being urged to grow up so that they can exemplify the norm, and they lived in a built environment and in a social environment that is not always or even in some cases ever set up to actually suit their needs, abilities, and wants.
So I guess I think that ageism is… It is a dominant phenomenon, it can take different forms, although interestingly, for both old people and four children, the notion that one is not fully functioning, that one's mind is not fully developed, that one's psychological skills are not necessarily good, that one's physical skills are inadequate – maybe that is some of the things that edges towards children and old people have in common. Thank you.
JANE DRYDEN:
We have six minutes. There is a question here which asked, "is there a way to respond to Ageism and ableism by examples of how that disabled ageing persons negotiate, or even challenge the deficit social constructions of themselves? What can resistance or even defiance of these norms look like?" Look in the chat.
CHRISTINE OVERALL:
It is in the chat? Ah, well I will go with the last sentence in particular. What can resistance or defies even look like?
It is hard for old people to do this, because part of the expectations that are laid upon us are to be acquiescent, quiet, accepting to accept the idea that their lives are pretty much over, that possibly they are a burden, which is not a view I accept it all by the way.
So, the best thing for individuals is for individuals to be able to speak up and I don't underestimate just how difficult that is. Of course it is difficult and part of the challenge is to simply recognise what is being done to oneself. I do think that there is more and more recognition of the pernicious effects of Ageism on people than there was in the past.
Socially and institutionally, we would need to think a lot more about how we structure society. I mean this is always the case with dealing with oppression, why do we have so many institutions? So many organisations? So many different ways of setting up society that segregate people by age?
Why do we put people in institutions and expect them to stay there and be out of the way? Why do we assume that education is primarily something for the beginning of life and not something for the end of life? Why do we assume certain stages are appropriate at some stages of life and not others? Why do we assume the active production of goods and services is the only way in which an individual acquires value?
If you make that assumption, then both young people and old people are inadequate. So, on the individual level, there are opportunities to push back. I can tell you from my own experience, that can be difficult and it doesn't always get a welcoming response. And actually sometimes produces a battlement.
Also, this is a matter of social change, so the kind of paper that I have written is, I guess atypical for me philosophical paper, is to just try to labour what I think of as some of the ideological functioning is of ageing, that is what I'm trying to do is a small contribution to mapping out the ways in which Ageism disables.
It is a huge project, to think about how to define and yeah, I think I have been spending a long time on it and I do not have all the answers. Thank you for your question.
JANE DRYDEN:
Alright, with two minutes left, you have a question from August Ormond who asked, what are the opportunities and limits if you think that we are doing the stigma of relying on other people in old age can play in removing the stigma in the broader disability community?
CHRISTINE OVERALL:
I guess one point I would make this is an obvious one which is being made in many, many different contexts and schools of thought. It is to help people realise how much everyone relies on others. I think that… Works! The question disappeared. I think that living in the pandemic has laid that there if it was hard for people to recognise before.
It is something that happened throughout life and happens in different forms
, like needing physical help, needing psychological help, needing help with cognitive input at intellectual input.
That happens at all stages of our lives, so the notion that old people are uniquely burdensome, not only fails to recognise the ways in which old people to contribute and do have value, but it fails to recognise the ways in which people are dependent on others at all stages of life.
Simply recognising that simple fact, the fact of interconnectedness. Mutual dependence, in a society that values the solitary accomplished individual, is a big task to attain. One that I think is really important.
JANE DRYDEN:
Super, thanks so much. We also take Christine Overall for her time and for the discussion and thank you for all of your questions.
(Applause)
CHRISTINE OVERALL:
Thank you Jane, thank you very much.
JONATHAN WOLFF:
Thank you, Christine and Jane, you too. Just a brief comment, as you were talking about the double bind, people that can do no wrong and no matter what they do. The extreme privilege that goes with it. A double bind is actually quite a good point to make the extreme outsider and insider. If you are shopping on fifth Avenue.
CHRISTINE OVERALL:
Thank you very much, that is a wonderful thought. That is really useful as an observation.
JONATHAN WOLFF:
Thank you, we are going to take a normal 10 minute break, we will be back at 30 minutes past the hour with Shelley and I think Eric is going to join us for the chair.
Thank you again Christine and Jane for chairing so well.
ERIC WINSBERG: Session, I am Eric Lindberg – is my great pleasure to interview someone who I feel needs very little introduction, Shelley Tremain, one of the two best interpreters of Foucault that I know, who I think is one of the most important philosophers of the 20th century, and especially important philosopher this year as she is the author of Foucault and feminist philosophy of disability, and editor of Foucault and the government of disability, and without further ado I am going to turn over the podium, as it were, to Shelley.
SHELLEY TREMAIN: Thank you for the kind introduction Eric. I would like to say I have enjoyed all the talks and discussions today, it has been fabulous, so thank you everyone. This presentation extends my investigations into the ways in which disability is naturalised in philosophy, and expand my analyses of how individualised and medicalised conception of disability, according to which disability is naturally disappeared to disadvantageous property are characteristic of individuals, is naturalised in political philosophy, philosophy of mind and feminist philosophy. At the end of the presentation, I will have indicated how this conception of disability informs the notable indifference of philosophers, the predictable COVID 19 tragedy, unfolding in nursing homes and other institutions in which seniors and younger disabled people are placed.
In addition, I will have argued that philosophers must engage in conceptual engineering with respect to how disability in these institutions are understood and represented. Throughout the presentation, I will refer to these institutional settings in various ways, primarily using the unfashionable term 'nursing home', the more upbeat phrase, 'long-term care facility', because I would contend to the fact that the latter phrase is a misnomer euphemism designed to conceal the barbaric character of these institutions. The recuperation of the former term, that is nursing home, is thus intended to make explicit that these institutions are outdated and should be rendered obsolete. Indeed, as I will show for furthermore, these places are neither home nor a site of care.
Philosophers generally do not regard critical examination of disability as pertinent to research and teaching, in social metaphysics and social epistemology. Nor do they generally speaking appreciate the critical importance of the philosophy of disability, rather remain resolute and philosophical enquiry about disability to appropriately and (inaudible) conducted the field of bioethics, a contestable subfield that both rationalises and legitimises eugenic practices.
My philosophical writing and activism in the profession, I have endeavoured to show how the naturalising and individualising assumptions upon which these practices of confirmation bias rely are inextricably entwined with the conceptual analytical enquiries that philosophers pursue, and the judgements that they make in both faculty searches and hiring practices, submissions, curricula, conference lineups and tenure and promotion.
In other words, social metaphysics and social epistemology of impairment and disability must consider how claims that naturalised these ostensibly biological phenomena emerge, what context these claims are mobilised, advanced, social, economic, institutional and political purposes. In this presentation, therefore, I do the following. I scrutinise claims made about COVID 19 outbreaks in nursing homes, group homes, psychiatric hospitals and other institutions in which disabled people and seniors are segregated, I point out that disability is naturalised and depoliticised in care discourses about how these institutions are situated with respect to the pandemic. And I argue that suffers must engage in radical conceptual engineering that construes disability as a (inaudible) of power, one of whose mechanisms is the nursing home industrial complex, as I refer to it.
Enabled the presentation is to convince you that ontology is always already political, and I aim to convince you that anthology and politics are mutually constitutive, and mutually reinforcing. My presentation thus implicitly advances an argument for the erosion of the artifactual distinctions between theoretical philosophy and applied philosophy. Ideal theory, nonideal theory. Naturalisation of individualised and medicalised conception of disability discourses about nursing homes is a form of structural gas lighting. (inaudible) has remarked that philosophers partake in structural gas lighting when they invoke epistemology's and ideologies of domination, that actively and routinely (inaudible) and obscure actual causes and mechanisms and effects of oppression.
My argument is that the epistemology told it of domination within philosophy are persistently naturalised disability repeatedly sabotage attempts to improve the situation and status of disabled philosophers, in part because these epistemology and ontology is facilitates, reconstitution within both the discipline and profession, the deeply entrenched prejudices according to which disabled people are defective, unreliable and suboptimal.
Against the individualised and medicalised conception of disability that prevails in philosophy, I maintain that disability is that lack of power, Michel Foucault sends. Structural gas lighting about nursing homes (inaudible) individualised and medicalised conception of disability bolsters, is one strategy of this apparatus of disability.
The exclusion of disabled people from the profession of philosophy and other positions of epistemic authority is another strategy of this apparatus. As Foucault explained it, and apparatuses of ensemble of – among other things – discourses, institutions, scientific statements, laws, administrative measures, philosophical propositions, mobilised in response to a perceived social need, in particular historical moment.
The perceived social requirement to which the historically contextually specific apparatus of disability response his biopolitical normalisation. Philosophers have largely ignored the social, economic, and political circumstances that surround nursing homes, and other congregate settings, in which seniors, elders and younger disabled people are put. Preferring to understand the settings as politically neutral sites of care, love and benevolence, rather than understand and represent them as carceral environments has enabled the segregation and management of certain populations seem to be disposable. According to a New York Times report, 479,000 residents and staff of 19,000 nursing homes in the United States were infected with COVID 19 by mid-September, while more than 77,000 residents and staff of these institutions had by mid-September died of the virus.
Residents and staff of nursing homes located predominantly in Black neighbourhoods of US cities were disproportionately represented among these fatalities. By October 27, 84,136 COVID 19 deaths had occurred in nursing homes in the United States, and 537,446 COVID 90 cases were recorded in these institutions.
Figures that do not account for the COVID 19 deaths and cases in group homes, psychiatric hospitals and other institutions were -- where seniors and disabled people in the United States live. Nevertheless, philosophers have had little to say about this COVID 19 deaths and cases, the conditions that precipitated them. Indeed, philosophers including feminist philosophers seem to take for granted that the bulk of these institutional cases and deaths are attributable to an actual property are characteristic inherent to senior and disabled populations. Hence, these cases and deaths philosophers seem to imply are in some sense unavoidable, and thus are neither ethically nor politically troubling.
Not even philosophers who advanced proposals about how society should respond to COVID 19 have interrogated the relationship between the outbreaks in these institutions and the character of the institutions themselves. This refusal on the part of philosophers closely examines the social, economic and political circumstances in which these COVID 19 cases and deaths have occurred has enabled the ageist, ableist, classiest and racist conditions that contributed to the causes of these infections and fatalities remain obscure unchallenged. Including the ableist, neoliberal, socio-economic conditions made possible the very existence of the institutions.
Hence, I call upon philosophers to pursue a form of conceptual engineering with respect to nursing homes, that is to acknowledge that nursing homes – so-called long-term care facilities, group homes and other institutions in which seniors, elders and younger disabled people are confined constitute a fulcrum of a massive network of government held the. I have named nursing home industrial complex.
This revision of our perceptions and understandings of nursing homes and their functions could be described as a process of semantic amelioration. Semantic amelioration as steadily hassling defines it involves the extension and improvement of the resources available to us with which to understand phenomena. To illustrate this definition, (inaudible) points to the movement from an understanding of the concept of race as a biological kind, when understanding the concept of race of the socio-historical kind.
Haslinger notes that the distinct conceptual scheme is available in the respective historical milieus in which these disparate (inaudible) circulated have generated diverging understandings of the concept of race. With my own terms of reference, I want to argue that the conceptual schema which currently generates perceptions and understandings of nursing homes and other congregate settings in which seniors and disabled people are put is a historically contingent mechanism of the apparatus of disability. That is, the conceptual schema that construes these institutions is paradigmatic sites of care and love, rather than as the linchpin
It is an artefact that is historically contingent mechanism of the apparatus of disability, other apparatuses with which disability is entwined.
The idea of an industrial complex has a distinctly American lineage with multilateral implications. In 1961 during a televised speech broadcast to the living rooms of a predominately white middle-class America, President Dwight D Eisenhower introduced the idea of an industrial complex by invoking the term military context. Military industrial complex was intended to warm the centre of the American public about the unprecedented conjunction with the immense military establishment by a large arms industry.
Eisenhower was especially concerned about the potential of the arms industry to influence government policies and budgets. This concern about the potential of American arms manufacturers, manufacturers of material items. To coerce the government, finance military aggression is abroad and so their own economic interests.
In other words, Eisenhower coined the term military industrial complex, particularly this concern. The more money that could potentially be made at home from military aggression is abroad, more that military aggression is abroad will be made. The more money at home and was abroad that were made, more influence that American manufacturers and military -related items could wield over electorate US government officials, the states to which the items will be produced.
After Eisenhower, Angela Davis introduced the term present industrial complex, describing the system to which prisons have become a mechanism of racial segregation in the United States.
The primary source of profits for many American manufacturers, multilateral corporations. Likewise, I use the term nursing home industrial complex to refer to an expansive socio-economic network that comprises nursing homes and other so-called care facilities, medical clothing and linen suppliers, healthcare and administrative temp agencies.
Professional associations and trade unions, prepared food companies, medical equipment manufacturers, pharmaceutical corporations, other entities that benefit financially from the segregation of senior and disabled populations.
Nursing homes and other congregate settings, the ableism with which this exclusion is co-constituency. Indeed, the nursing home, the industrial complex is increasingly coming to hold coercive economic influence over elected officials, for which Eisenhower had forewarned.
Note for example, that the term nursing home industrial complex aptly describes the relationship between the American nursing home industry and US politicians.
It was starkly evident when in the summer of election year 2020, US Senator Mitch McConnell initiated legislation which would grant legal immunity to the owners of American nursing homes for liability related to COVID- 19 deaths, and any other fatalities that occur on their premises.
In early July in fact, 22 American states had already adopted such immunity laws, beginning with the state of New York, thanks to a pausing governor Andrew Cuomo's annual budget.
As a mechanism of the apparatus of disability and ultimately neoliberalism however. Nursing home industrial complex diverse is across the borders of the United States.
Extending far beyond that, the nursing home industry now being an integral part of the economies of Australia, Canada, France, Hong Kong, Italy, South Africa, South Korea, Sweden and the United Kingdom. Our seeking new markets in Latin America, the Caribbean, India and elsewhere.
Since early March of this year discourses about COVID- 19 cases and yes, that North American nursing homes and other institutions, where elders are segregated have unravelled in the North American mainstream press.
In the terms of these discourses, COVID- 19 cases and deaths in these institutions have been largely naturalised and medicalized, represented as an inevitable consequence of vulnerability inherent to the residents of the institutions. Due to their age, an apparently intrinsic characteristic, now commonly identified as an underlying condition, or a more technical term core morbidity.
Only sporadically has the succession of COVID- 19 outbreaks in North America nursing homes been attributed to the very nature and functioning of the institutions themselves. Including, their architectural design, scarcity of supplies and resources that, isolation and disability resumes that characterise. The transient nature of the neighbour that sustains them, all of which element constitute economic bottom line within the nursing home industrial complex.
The individualising and totalising power conditions it.
In late April 2020, more than 1000 of the 1350 COVID- 19 deaths had by that time occurred in the Canadian province of Québec and were tied to nursing homes. The Progressive Conservative government of Ontario should have called to the Canadian Armed Forces to assist with the Emergency in Ontario nursing homes. Following the lead of the government of the he back who had already done so a month earlier.
The rising number of COVID- 19 cases and deaths among registered nurses and staff most of the latter of whom racialised. In June, more than 80%, that is more than 6000 of the total number of COVID- 19 deaths in Canada by that time had occurred in nursing homes.
At the end of September, COVID- 19 deaths in Canadian nursing homes accounted for in excess of 82% of the close to 9500, Canada had at that time. With almost 2000 of these deaths occurring in nursing homes throughout Ontario.
On October 9 of this year, more than 60 nursing homes in Ontario were on lockdown due to COVID- 19 outbreaks.
In mid-October, in the Canadian capital city of Ottawa Ontario, 30 nursing homes were in the grip of outbreaks, leading to the deployment in these institutions, more than 600 Red Cross workers.
In October 20, there are outbreaks in 87 nursing homes in Ontario. On November 14, a number had climbed to 100, 26 nursing home outbreaks and Ontario's capital city of Toronto and surrounding areas alone.
In December 4, a number of outbreaks in Ontario nursing homes had reached 117. Indeed, by October 24, almost 1/5 of the COVID- 19 deaths in Canada had occurred in Ontario nursing homes.
Despite these figures, Ontario's Nero liberal progressive conservative government has failed to launch her transparent public enquiry into the circumstances surrounding these COVID- 19 cases and deaths.
On November 16 in fact, the government voted unanimously built to 18, legislation similar to McConnell that now ensures retrospective legal immunity due to COVID- 19 deaths that occur on premises.
It is no coincidence that Michael Harris, the current chair of the Board of Directors of Chart Well, the largest owner of care homes in Canada. He himself is a former progressive candidate of Ontario. His annual salary of C$230,000 for his part-time position as chair of the board of chart well, his holdings in charts well of an estimated 4 1/2 to $7 million Canadian, Charles Wells relationships, provincial governments across Canada are in combination to the elements of the nursing home cooked industrial contracts in Canada.
When he served in 1995 to 2002, his neoliberal government like Fords slashed public spending on health care and other social services, relaxed regulations and public oversight of nursing homes. They removed nursing home staff minimums, significantly expanded privatisation of these institutions, by redirecting public funding.
Redirecting provincial public funding, privately owned profit nursing home corporations. The majority of COVID- 19 deaths have occurred in for-profit nursing homes, resulting in public outcry and demands for the Canadian federal government to take complete control of long-term care.
Despite the fact that funding and oversight of nursing homes in Canada falls under the jurisdiction of the provincial governments, not the federal government. This public outcry and these demands became more insistent nevertheless after military medical personnel deployed in more than a dozen Ontario nursing homes, a whistleblower about safety violations at five of the facilities.
Four of which are for-profit nursing homes. These violations included cockroach and rodent infestations, dirty linen, no linen on residents beds. Inadequate cleaning and sanitising of their rooms, faecal contamination, lack of PPE, lack of hygiene, lack of staffing, lack of staff training with respect to infection control.
Let me underscore that these sorts of infractions are not unique to the unprecedented circumstances of the pandemic as Ford and others in his government have both insisted and denied.
One October 22 in fact, Canadian broadcasting corporations, news program Marketplace put a segment in which it reported that 85% of more than 600 nursing homes in Ontario have over the past five years repeatedly broken laws with incidents of abuse, neglect, failing to provide residents with enough food and water and medical errors such as distribution of the wrong medication.
Steve Colman, the host of this segment pointed out furthermore, an astonishing 30,000 such interactions have during the past five years occurred in these past years with no repercussions for any of them.
Some advocates were elders and disabled people argue that public ownership of nursing homes and so-called long-term care facilities could resolve the widespread problems that prevail in these institutions. Note however that only about 60% of these institutions in Ontario operate on air for profit basis.
Although as I have noted, these 5% of Ontario nursing homes have been repeatedly cited for abuse, neglect and medical error.
I want to emphasise therefore, the problems that persist in nursing homes and other institutions with seniors, elders and younger disabled people where they are segregated.
There are irreducible aspects of the institutions themselves and indeed, our function to them.
The outbreaks that continue to occur in nursing homes and similar congregate settings across Canada and indeed globally are also not due to an inherent characteristic of seniors and disabled people.
That is, not due to some inherent vulnerability of the senior and disabled populations, who live in these institutions, the public ownership, the funding and adequate staffing would manage and control.
On the contrary, thousands of COVID- 19 cases and deaths in nursing homes and other so-called long-term care institutions across the world. Like the thousands of COVID- 19 cases and deaths in prisons are testament to the insidious nature of both the institutions themselves and the castle, archipelago of our societies in which we increasingly contribute.
The bly shown as a focus that nursing homes like prisons should be abolished, both the industrial complex and the prison industrial complex must be dismantled. Many feminist philosophers, rather than embark on a path of sustained critical examination of the concept of vulnerability, have works to redeem the allegedly free discursive status that has customer customarily described her vulnerability and time attorneys are disparaged. However, the apparent self evidence of the ontological status of vulnerability is an artefact of structural gas lighting.
Hence, the concept of vulnerability to should be the target of a feminist project of conceptual engineering. Rather than a pre-discursive inherent human traits, vulnerability is a contextually specific social phenomenon on, who's politically potent and artifactual character can be recognised and acknowledged what black feminist philosophers amongst others were to take up Foucault's idea of eventual isolation.
Foucault use the term event a station (inaudible) exposes the singularity of a given practice or state of affairs. Eventalisation aims to show that things are not as necessary as they seem. As Foucault remarked, and I quote, it wasn't as a matter of course that people came to be regarded as mentally ill, it wasn't self-evident that the only thing to be done with the criminal was to lock him up, and it wasn't self-evident that the only causes of illness were to be sought through the individual examination bodies. No one has a race or disability when people are racialised and disabled. No one is a vulnerable (inaudible) many people including seniors, disabled people and prisoners are made vulnerable, that is they are vulnerablised. Even Wildcat adequately staffed, nursing homes and long-term care facilities cannot be the proper response to the question of how societies should provide to elders and younger disabled people. On the contrary, such apparently genteel institutions should rather be recognised as the windowdressing of the nursing home industrial complex, which is a castle network of power that contributes to the reproduction of ableism, ageism and racism while underwriting a neoliberal political and social environment in which productivity and profit are steadily prioritised.
The comment that African-American feminist legal scholar Dorothy Roberts recently made about the futility of care ethics in work on prisons on so-called child welfare systems also captures the futility of a care ethics approach to nursing homes, and other institutions in which seniors, elders and younger disabled people are incarcerated. As Robert put it, and I quote, we can't fix prisons or so-called foster care, training their agents to be more caring. The very logic and design of the systems are antithetical to care. I want to argue, likewise, that the eugenic logic of neoliberalism which provides the impetus for the nursing home industrial complex makes a mockery of care and concern. To quote Roberts again, and I do, the only way is abolition. In short, my argument is that we should regard upscale regulation and renovation of nursing homes and other institutions in which seniors and younger disabled people are confined as a kind of gentrification of apparatuses of power. Gentrification designed in part to ease the minds of the community at large about the segregation and dehumanisation of these institutions – sorry, of the community at large about the segregation and dehumanisation that these institutions facilitate.
In other words, gentrification effectively expands the scope of our apparatuses of power to systemic injustices that constitute an comprise. Thank you very much. For your attention.
ERIC WINSBERG: Thank you very much that very powerful and poignant presentation, I'm going to abuse my chair privilege very quickly just to mention, the point about us we shouldn't naturalise the idea of COVID death in care home and I have a quotation that I was straight that as well as anything I can imagine, this was a letter to the American medical directors Association, we interviewed (inaudible) that had registered more than 24 deaths related to COVID 19 140 residents. No acute respiratory distress systems, mortality was a hypo quirky bakeshop, most of the victims had been left alone in their rooms for many days without help because of the lack of protective masks and the work of a caregiver defected 20% staff absenteeism rate et cetera, so to my mind that illustrates the idea of cover deaths in care homes not being natural as well as anything I can imagine. Sorry for abusing the privilege there. We have a couple of questions.
SHELLEY TREMAIN: I just want to say, that is a very good quote, if you do any amount of research in this area of COVID 1900 homes you get story after story like that, and still as I tried to (inaudible) in my presentation, you still get these claims about the vulnerability of the seniors, it is not the institutions themselves and the institutional culture and operations, but it is something inherent to the people themselves.
ERIC WINSBERG: Great. We have got some questions already. So you mentioned comorbidities, I would if you could address the term frailty, how does labelling the elderly and some disabled people generally has frail address our attitudes, indeed someone who works in the English National Health Service I have noted the attitude towards frail patients with to get those patients out into care homes fast initially without cover testing to supposedly reduce their risk. Of course this was a disaster.
ERIC WINSBERG: The question is how does the concept of frailty. This fully.
SHELLEY TREMAIN: It is mostly associated with the concept of vulnerability, and the term vulnerability has been the one that has been circulated and circulating in the discourse nursing homes in COVID 1910 frailty. They said the same kinds of purposes, right? To promote this idea, and (inaudible) to a number of the things that we have seen overall about ageism, and ideas about seniors and age, so that is what I would say with respect to the term frailty. It is, in the discourse around COVID 19 homes, it has been supplanted by the term vulnerability, but it is doing the same work.
ERIC WINSBERG: Great. Zara has a question, how does the narrative around quote "excess deaths related to COVID relate to the argument naturalisation of COVID death?
SHELLEY TREMAIN: Access, the narrative around access –
ERIC WINSBERG: People often, I take at the question is that people often want to compare the number of, you know, confirmed COVID deaths in the US to what the CDC reports number of excess deaths, so we are told that there are 260,000 more deaths this year that is normal, and those are called excess deaths. So the question is about that term, and how you think it relates to the idea of naturalisation of COVID deaths.
SHELLEY TREMAIN: Naturalisation of COVID deaths… I am trying to… I am trying to… Undermine the idea that there is a natural COVID death, and the discourses that have been presented to us thus far, around nursing homes and COVID 19.
I think that disabled people, seniors, elders, have been seen as disposable and seen as not really the deaths that account, their deaths don't count as much as other deaths, and they are seen as – you know, they are seen as inevitable, as more natural, and I have tried to indicate why that is not the case.
ERIC WINSBERG: Thanks. The next question is from Supria, and the question is, do we know about the etymology of the phrase care home has come about? Your presentation has shown that they don't care they are not homes, but as you say industrial complexes, care home deaths seems to be a bit of a paradox, what is the etymology of the term you know?
SHELLEY TREMAIN: I have read some things about the etymology of nursing homes, care homes I think the term, homes is more recent, is a recent euphemistic term that has been introduced, as nursing homes – the term nursing home is supposed to be so outdated, but in fact it is more appropriate I think for really the conditions in these places, and I have to say – before the pandemic, I think that many, I think that the majority of the population really did not know what nursing homes are all about, and what the conditions of actually liking them, and as I said people have tended to think of them as sites of care and love and benevolence, and it is just not – that's just not the way they operate. Quite the contrary, even down to things like how a certain residence can't use more than one what's called an adult diaper today, it doesn't fit in the lines of the budget, I don't know the exact etymology but I would say that of the term care home I would say that my best guess is that care home has been introduced as a euphemism and quite possibly influenced by, even influenced by the rise and expansion of the whole idea of care ethics, so…
ERIC WINSBERG: Its partner euphemism and partly an attempt to seem de-radicalised, nursing home sounds medicalised aware that care home doesn't.
I don't think I see anything else in the Q&A. Does anybody else have a question they want to pose in the chat? Yeah, so MP has a question. Go ahead…
SPEAKER:
Eric, I think there is some in the Q&A. The system seems to be breaking down, slightly. If you look at the Q&A, there is one from Cynthia, one from Nancy, can you see that?
ERIC WINSBERG:
Oh, I'm sorry. I've got it. OK, sorry. This is from Julie E Maybee "thank you for my sterling presentation which is close to home. My mother is living in a retirement home in Ontario, do you think it can also be used with the conclusion that nursing homes and other such institutions should be abolished? Really caring for people requires not having such institutions."
SHELLEY L TREMAIN:
I guess my short answer would be sure, that would be possible. I wouldn't want to endorse care ethics for other reasons. I think it is possible that, you know, one might be able to revise a care ethics approach that called for the abolishment, the abolition of these places. Sure.
ERIC WINSBERG:
Great, so Tammy says a great thank you for your talk, can you speak to the difference for between the need for care, get settings?… The complex of community services and access to such services for a full array of care needs. I've seen need for care and congregate care inflated?"
SHELLEY L TREMAIN:
Certainly, those two are often conflated and I am calling for abolition of these institutions and so I am calling for the, there better funding and expansion of homecare and services in the community for people.
I know that my colleague Joseph's Mondo is going to talk a lot about community care and social services, home care. In his talk, tomorrow. So I do not want to say too much about that.
One thing that fuels the nursing home industrial complex is a lack of community service, but, you know, there are reasons why there is a lack of community services and it goes deeper than just the fact that there is a lack of services and it goes to neoliberalism and you know, institutionalisation the economic bottom line and ableism!
It's certainly, you know, you put people in institutions if you don't see them as, you know human beings with a range of emotions and needs and value.
So, it gives a reason that there is a lack of community services and why there are institutions instead.
ERIC WINSBERG:
One of the most powerful way to explain a nursing home operates, they lobby to make sure that Medicare, home care, communicator.
I've a question from Cynthia Stark, some people oppose the so-called locked arms and other restrictions on the grounds that we should have protection for the vulnerable. That came from the Boris Johnson administration, it is obvious that this cannot be done as vulnerable people need to work etc.
Those that Indoors this idea must be imagining and more cynically all the vulnerable should be institutionalised.?"
SHELLEY L TREMAIN:
And the question would usher grab from that. I think people are made vulnerable and I think this is done through a variety of mechanisms, social mechanisms and hypothesis. The direction of causation is wrong to think that we have to protect the vulnerable, because in fact they are being made vulnerable, they are being vulnerablised by even the very idea that they need to be protected.
ERIC WINSBERG:
They are being made vulnerable by care homes. There is no question about that. This may have to be the last question "I appreciate your reference to feminism, do you feel like the argument can be addressed to be relevant to your argument. I suspicious of care theory because it is so gendered. We do not institutionalise care when we did the bulk of it at home. What kind of alternative model will get beyond this value?"
SHELLEY L TREMAIN:
I think that I always, I always recoil a bit when I hear arguments about how women do most of the care in the home, in the same paragraph or argument as with discussions of the institutionalisation. Because they offer a number of reasons. What kind of alternative model of care?
I think that there can be care in the home if, that doesn't depend upon women doing, you know, more or even most of it, if there are sufficient services.
Disabled activists and increasingly disabled theories are talking about how especially with the pandemic, talking about how homecare, care in the community is significantly less expensive than coming in though, care in the institution, the running of institutions.
I think it is possible to have care in the community that does not rely upon, you know, that does not need to be supposed, to have a supposed relies upon gendered work and can be adequate, can enable people to flourish. Can enable people to, you know, live lives that don't require them to be isolated and segregated.
ERIC WINSBERG:
Thanks, I think we probably need to wrap it up, Jonathan, is it probably time?
JONATHAN WOLFF:
I think… Thank you. Do you just want to wind up, Eric?
ERIC WINSBERG:
Yes, I thought that was all terrific, thank you for that Shelley, very powerful stuff.
SHELLEY L TREMAIN:
Thank you very much, Eric. It was my back I will turn it over to you Joe.
JONATHAN WOLFF:
Thank you very much to you Eric and particularly Shelley, fantastic paper and also for those who weren't here at the start, this is all Shelley is doing, this conference. She has done all the work.
(Applause)
JONATHAN WOLFF:
I want to thank everyone who is with us and Christine is joining of course. We are back on tomorrow, I will not attempt to say what time we are in every time zone, because I know there are people all around the world.
If you look at the link, it is 1 PM UK time, 1 PM in the afternoon UK time. Welcome back as many of you as possible tomorrow and on Friday to and just a reminder for me to thank all the speakers and shares today and to tell the speakers and shares to share their email in the box, because there is a link for another short meeting if you would like to come to that.
There is no requirement, just a little wrapup. To thank everyone had the support from Katie and Jamie who have been behind the scenes today and the caption is who will now have to caption my thanks to the caption whoever you are, probably plural.
We will begin tomorrow with an informal meeting greet which is really for you to deliver a little bit about yourself in the chat when we arrived. That is what we will be asking. I think we will close now.
SHELLEY L TREMAIN:
Thanks everyone, see you tomorrow.
JONATHAN WOLFF:
Thank you, Shelley.
JONATHAN WOLFF:
See as many of you as possible tomorrow, goodbye.
10 December 2020 – Day 2/3
JONATHAN WOLFF:
Good afternoon to those in Europe, good afternoon to those further west of us and good evening Terry went much further to the east.
I am very pleased to welcome you to the second day of our conference, philosophy disability and social change. We are going with the first speaker Robert Chapman in just a few moments. A couple of things I wanted to mention before we get started.
You will see instructions in the chat about how to use the captioning that we have for you, for the conference.
You need to look at the bottom of your screen and the closed caption, or CC button. That gives you a number of options, including changing the size of the subtitles. Also changing the size of the text as it appears in the chat for you. You might want to look at that if it is not coming up at the right size.
Secondly, I would like to remind you that tomorrow, at the close of the conference, we are going to attempt a type of social interaction where we will put all the participants into breakout groups. That will be for half an hour, so you can conference, network. We will give you further rejections about that tomorrow.
For today, on behalf of Shelley Tremain, the organiser and the black thick school. I will hand over to Bryce Huebner.
BRYCE HUEBNER:
I'm associate professor at Georgetown University. It is my great pleasure to be in to introduce Robert Chapman. I'm incredibly excited to hear Roberts talk on neurodiversity and technology paradigms. I would be really quick in introducing him. Robert completed his doctorate on autism thriving and they are currently a research fellow in the Department of psychology.
Robert hasn't written a certain set of papers which have opened up really interesting pathways for thinking about neurodiversity, from the perspective that integrates insights from philosophy and medicine with critical and political analysis of social categories.
I find this worked really exciting and I think that respective is really likely to push philosophical discussions about the relationship between biological and social structures in a really novel direction.
From the papers I have read by Robert, I am really looking forward to learning more from him today.
ROBERT CHAPMAN:
Thank you so much Bryce, what a lovely introduction. Thank you to Shelley and Jonathan for setting up this incredible conference. And for inviting me to present. Can you see the screen? You can hear me fine? Good.
Right, I will just, just hiding my face… Great, so, I would just dive right in. Today we are talking about neurodiversity and the pathology paradigms that I want to focus on the pathology paradigms. I would say little bit about it and finally how it might help us think about contemporary philosophy of medicine and how we think about health and disability and so forth. At least in philosophy as well as more broadly.
So, two of the key terms I'm using, pathology paradigms and neurodiversity paradigms come from this person on the right ear. She is a neurodiversity and autism advocate. While the term neurodiversity and the movement has been around since the late 90s when the term was coined. It was more of a political term without a clear definition. One of the really great text in a neurodiversity theory it is a chapter that was written in 2012 where she argued that essentially the neurodiversity movement could be understood as calling for a paradigms shift in how we think about mental function.
In particular, she made a really important distinction between the pathology paradigms which is the dominant paradigms according to Walker and the neurodiversity paradigms which is what neurodiversity components such as myself and Walker can be understood as calling for.
There is a relatively narrow normal range to which the function of the human brain and mind ought to fall. If you fall outside of this and especially if you are struggling on the pyridine, you are likely to be considered bad in some way, depending on how much you are struggling you will be considered pathology, that there is something wrong with you.
The neurodiversity paradigms answer a different perspective. The idea that it is something natural and valuable. This is a different way of thinking about mental function. It will lead us to ask different questions, call out different hypotheses, respond and think about neurodiversity in a completely different way.
These terms have become very influential within the neurodiversity movement, not everybody uses them, that many people do. They've also become quite influential in the emerging academic literature on neurodiversity theory.
So far, most people writing on this and expanding on it have focused on the neurodiversity paradigms. The idea there is that the rationale there is this is the new exciting idea that you want to explore, or some people want to criticise and so on and so forth.
The pathology paradigms, I think has been relatively overlooked. That is what I want to focus on today. No one is really explore this in great detail, although there have been some blog post and for the chapters on this, they mainly reiterate the same basic points without exploring and filling in the gaps. So that those are left to be filled.
There are a bunch of really important questions I think we can ask about the pathway paradigms. One question, which I think critics of neurodiversity might be more likely to ask is if the path ology paradigms even real? Perhaps they might wonder is it just a caricature and there isn't a restrictive normal range which means the pathology is in in the first place. A defender of the neurodiversity paradigms and the ideas concept, like myself want a slightly different questions.
One is when did the pathology paradigms emerge? Who invented it? After all, paradigms do not emerge out of nowhere, they always come out at a specific time in history and usually given some new invention, a publication, or theory which changes how people think.
Relatedly, it will be helpful I think to ask what his original rationale was and this will be helpful for defenders and critics. It is also helpful I think to ask how widespread the pathology paradigms. There may be reason to think it is more widespread and as I will suggest later might relate to contemporary philosophy of medicine.
To begin towards answering these questions today, I, my plan is to give something of a genealogy of the pathology paradigms. I use genealogy in the sense of giving a select history. It does not give all the details, but it gives a certain story which identifies the origin and traces of its development. It allows us to take a kind of critical distance of ultimately the contemporary philosophy of medicine. In doing this, I want to show the contemporary philosophy of medicine, or at least some of it as some more influential theories is actually contemporary pathology paradigms. While philosophers in general take themselves to be giving a universal rational description of the world for example.
Theories of health or disability and so on and so forth. By giving you the genealogy of the pathology paradigms I had to show that the contemporary philosophy of medicine is actually part of the pyridine. Catchment paradigms.
The story I want to give starts with Hippocrates in ancient Greece. What I want to trace it first is the difference in how a change in the way we conceptualise normalcy and pathology where the focus goes from equilibrium to population average.
In that third century BCE, they hypothesised that it stemmed from an imbalance in bodily properties. So to be healthy to be medically normal, this meant that your orderly properties were imbalance. This also included mental health. If someone was considered mad in ancient Greece, there were many theories of this for example some people would think it was caused by demonic possession.
The Hippocratic's would view those theories and say it is the brain properties being out of balance, thus causing a madness and if you are healed from that that would be considered a case of the properties rebalancing.
There is no concept, it was all about equilibrium to the average of the population. This was an extremely influential theory and it continued through the second century A.D., and schools throughout the mediaeval period all the way up until the 17th century when it began to go out of fashion.
Still the idea of mental health is equilibrium has manifested in different ways. For instance in the 17th century, hysteria was often seen as the wandering womb, disrupting a woman's bodily equilibrium and therefore causing the mental symptoms of hysteria.
Even though this theory did not focus on bodily properties in the Hippocratic sense, it was still the equilibrium conception of health.
Perhaps the last influential conception of mental health which is based on equilibrium I would argue is a sick man Freud. For Freud, neurosis, which is pathology stems from a conflict from different parts of your psyche. The conscious and unconscious. In other words there is an unbalanced and upset of equilibrium. If there is no conflict, then you are mentally healthy.
It was precisely because Freud had an equilibrium conception in the pathology of help that he could say that almost all of the population was pathological because it was nothing to do with being outside of the statistically average functioning.
Around the same time Freud was developing his theories, a very different conception of normalcy began to emerge. We should be familiar to disability scholars. In the 19th century, in France, doctors began meticulously detailing records from the patients and applying primitive statistical analysis to try to discern the patterns of health and pathology which either had been overlooked, or understood with less precision than in previous times.
By 1835, the Belgian statistician had proposed the concept of the average man. The average man means average in terms of bodily structure and functioning and is typical for the population and he associated this with health, falling outside the average and associated with pathology.
So for the first time, health is no longer a matter of equilibrium, it is a matter of statistical normal functioning inside and outside. This can be seen from his enduring invention that we still use today. This expresses the idea that if you fall in the normal range you are considered healthy but outside that is bad and you become pathological. Within the broader shift, the pathology paradigm emerges, but we can pinpoint it to a specific scientist in Victorian England. The cousin of Charles Darwin and his key move was to apply the theory of evolution with an emerging statistical conception of health. In particular, he combines the idea of the survival of the fittest and the notion of Darwinian fitness with the statistical analysis of the population which leads to a ranking of people in terms of fit to least fit. Galton was concerned with medical functioning and intelligence. The shift this brings is mental functioning can now be seen as sub- normal, normal or supernormal by combining statistical analysis of the population and combining that with the idea of fitness in the Darwinian sense. Comparing people and deciding who is purportedly fitter or less so. This can be seen in Galton's invention of the IQ test. This influenced later developments that we still use today. It precisely combined normative judgement with the idea of Darwin and fitness leading to a ranking of people as you consider the functioning fitness and also in a normative way in a way that places value on people's lives. It is worth noting that today Galton is perhaps well-known for coining the term eugenics and is often referred to as the father of eugenics. It is easy to see how this thinking stems from his way of ranking people and his particular understanding of the theory of evolution. I want to suggest we can disentangle eugenics from Galton's new specific way of thinking.
Part of my argument here is that the rationale and the core assumption or driving forces for the assumption of the pathway is a relatively restrictive norm, Galtonian individualistic comparative is. This is where you look at individual fitness and compare everyone across the population and rank them. It is supposed to give a scientific understanding of fitness, but is heavily value laden. This leads to valuing minds in a statistical deviation of the norm in terms of Darwinian fitness. It relates to the subnormal, normal and supernormal in terms of mental function. My caveat is not synonymous with eugenics. I think it is clear how it is linked to eugenics and I think it is clear they are linked historically, but I also want to say that you can be Galtonian and a eugenicist and you can have an individualistic comparative is. This is extremely widespread today, even around people that would be horrified of the more explicit eugenic policies that were suggested. A second caveat that this is not synonymous in the model, as with eugenics, it leads to over application of the model and lends itself to that. It is not synonymous with it. You could have a medical model with a different paradigms. In substance, I want to say the core issue is not the medical norm. There is a comparative is that fuses with the model. So far, I have mentioned Galton's work on intelligence. That is something he was obsessed with as he considered himself a genius and thought it ran in his family. His influence spreads to thinking about mental function on a broader scale. To give a few examples, in psychiatry. Often referred to as the father of modern biological psychiatry and the DSM classification system where we classify people into different kinds or mental disorders was precisely his own classification that is acknowledged to be deeply value laden in such a way that was driven by the fear of generation. Galton articulated this in his writing and speeches. Similarly, a contemporary who was known for coining the term schizophrenia, as well as autism, among other terms. He views his day as allowing them to develop eugenic policy that he thought should be broadly used. Beyond the more explicitly generous sell, they are less open today. It is worth quoting Martin Brooks from his 2004 biography of Galton as he summarises that Galton worked in the world of genetic councillors from pharmaceutical organisations and government select committees that are still basing biological value on people's lives and futures. Today, the hard Victorian edge of the vision has been replaced by the smooth symbol of medical respectability. This is the kind of thing you see in contemporary bio partners. To clarify why I think the idea of Galtonian individualist comparators is the issue here is helpful, but I want to give some examples of the temporary orders of discourse as it looks at the neuro diversity component. The first of these is how we define autism. It is seen as a spectrum and it has this notion of mild, severe or high functioning/low functioning. On the whole, new proponents are mostly pro the concept of autism and also pro autism diagnosis. This is not an anti-psychiatry position, just against diagnosis or something like that. My neurodiversity says is the mild-severe ranking. It is generally found to be unhelpful and deeply dehumanising. I think we can understand the issue here of the implicit Galtonian individualistic comparison as you get people with high intelligence and neuro typical with mild autism and severe autism and so forth. It is a ranking system that is supposed to be objective but also deeply normative and places a biological value. It might be helpful to think of this as a problem of the Galtonian individualistic ranking system. The second example is plan for behaviour analysis. This is a behaviourist therapy for autistic children that is supposed to deliver desired behaviour and decreased undesired behaviours. The main reason this is so widely used is because controlled studies found that it increased IQ in autistic children. The work had a main point that many autistic people review this as traumatic and can cause lasting trauma. That is bad for autistic self acceptance and identity formation. Here again, we see the implicit Galtonian individualist thinking about things, but the idea around these studies is that there is a ranking system where people who are subnormal and the goal should be to bring them back to normalcy and that is the issue from the neuro diversity perspective. Why not the neurodiversity paradigm and that focuses in autistic thriving rather than restoring to normalcy? In a quote from the book on the right, it is open access and you can download it, summarised it nicely in the chapter detailing the autistic major perspective. They said it is rooted in the idea of neuro diversity which challenges the medical model of the service provision or treatment to return autistic people to normalcy. It is precisely the idea of returning to normalcy. They go on to say they are not against the model as such. We might see this as having underlining comparativism as a core issue. I want to move on to contemporary philosophy of medicine and disability. It is supposed to give an objective analysis of a nature of health and so forth. Now I have given this overview of the pathology paradigm and a possible interpretation of it, and I hope this can give a critical difference of the philosophy of medicine. It might be considered to be the pathology paradigm. A core example is the bio statistical theory of health, as this is the most widely cited and influential theory of health in the philosophy of medicine and taught on many courses. He gives a completely objective analysis of what health and pathology is. He bases this on the idea of individual Darwinian fitness and statistical analysis. While the theory is interesting in many ways, I think we can see an underlying comparativi that will not be objective, but a possible way and not a good way of thinking of medical functioning. It is worth noting that some critics point out the various ways how this theory is value laden. So do his supporters. Norman Daniels' theory cites him as dividing narrative confusion of what it requires. Daniel claims is objectively important because we need to meet this level of functioning in order to maintain and range of opportunities. The justice required based on the analysis is that we bring people into the norm as we end up with a pro ABA position. You can see it is problematic. I want to mention contemporary Aristotelian disability justice. One key example that cites Aristotle as an influence but ends up with a similar theory. It is claimed that the species is evaluated and tells us the appropriate benchmark for judging if a given creature has given opportunity for flourishing. They have the idea of a species of norm and as you fall into this abnormal, you can flourish at a varying event. It gives an idea of autistic people and claims justice requires specialist people to help autistics maintainability is a form part of a species norm. It is worth mentioning that they are open to a more social model analysis so it doesn't necessitate changing the individual, but I think you can see an underlining comparative rhythm that devalues certain ways of being that would flourish in different ways available on her account. There are other Aristotle liens who have made other statements in recent years. Recent article found that without the ABA the prostate for a child with autism living midlife are virtually nil. They are explicit for living a good life. I want to end by very briefly saying something about neurodiversity as an alternative. So far I have tried to give a genealogy of the pathology paradigms about its history and how it might relate to contemporary philosophy of medicine. Judy Singer who is on the right ear, whose basic idea of neurodiversity can be summarised as follows, "we should think about minds from an ecological perspective, not from an individual Darwinian perspective. Ecologist look at different organisms, they are not comparing and asking which one is going to survive? They are looking at how they act together in a system and how they mutually support each other. This lends itself to a way of seeing a mental functioning as relational and interdependent not individual and a matter of competition." Who we see an alternative way emerging which is currently emerging, if anything a new kind of normalcy. It is more of an equilibrium, a population average, where variation itself is normal. If we took this as a basis for our philosophy and medicine, philosophy of disability and disability justice, there would be extremely different kinds we have now, the type I call paradise philosophy. I've given a genealogy today, I know I have not shown the pathology paradise to be wrong, but something to do as well. I hope you are understanding the historically contingency of the pathology paradigms. It can be included in the philosophy of medicine which I have identified if my arguments have been convincing, has often been the pathology paradigms in medicine. Finally, I hope that we can see that philosophy and philosophy of medicine would benefit hugely from incorporating an air of diversity paradigms. We have this new understanding that takes variation itself and which can ground very different theories of health, disability justice to flourish. OK, that is the end, thank you very much.
BRYCE HUEBNER:
Alright, that was fabulous talk and I think there is a lot to talk about. We have already got a bunch of questions coming in. Probably, the best one to start with is one question which asks "the suggestion that the medical model itself may not be a problem intrigues me. Can be really separate out the medical model from this particular view? For example comparative individualism?"
ROBERT CHAPMAN:
That is a really good question, thank you so much. I think there are different ways of looking at the medical model, because some people, very usefully analyse it more as an ideology. Some people analyse it more as a specific, essentially a scientific model which can be useful in some ways and not useful in others. Now, if we look at it from an ideological perspective, I think it is very hard to separate them. Sometimes, that is sometimes useful to do. I would like to say though, that you can have in some sense a medical model in the other sense say you run a neurodiversity paragon. Perhaps someone will tell me I am wrong about this, and maybe I'm speaking ignorance. From what I understand, a medical model is often helpful to prices and the like epilepsy. There are lots of neurodiversity but it will say something like, "I see my autism from a neurodiversity perspective, I'm happy to see epilepsy as pathology." To which the medical model will apply. In general, I do want to say it is right that they are historically intertwined in their ideology and intertwined in all sorts of ways. It can also be useful to some extent to separate them. Just basically for people who do find them helpful, who defined the medical model helpful in some respects. So come again.
BRYCE HUEBNER:
Excellent. That feeds in nicely to our next question from Benjamin Carpenter who asks, "thank you for this fantastic and insightful presentation. I was wondering, particularly given that your use of the genealogical method, whether you had any thoughts about how the work of shell and co-intersects with Carl Tony and individualists comparison theory. The notions of normative responsibility here seem to talk to his notion of disciplinary power. I'll be interested to hear your thoughts on this?"
ROBERT CHAPMAN:
Yes, I think it is very relevant. I internalised some of the thinking is a master student and that has led to precisely and influence here and how I thought of this and how I have taken this approach. Saying that, I am not a scholar and I cannot think and speak knowledgeably in detail as an influence here. I think perhaps, Shelley will have something to say about that. That will be much more knowledgeable.
BRYCE HUEBNER:
Are right. Matty L asks, "thank you Dr Chapman for the highly relatable and valuable presentation. I am curious to hear your thoughts on whether a current age of mass social media interaction allows autistics to live and engage with the world and life. Or does it fracture a autistic sense of identity even more?"
ROBERT CHAPMAN:
Right, OK. That is an interesting question. I mean it has been quite clear historically that the internet has been hugely helpful for autistic people to develop a shroud sense of autistic community and identity as well as social justice movements. The neurodiversity movement and other movements are some of the first kind of, I was a primarily internet movements. There seems to be asleep? A lot of facts are there. The reason that may be helpful for autistic people such as myself. Often it is nicer to be in your own home where you can control your sensory environment. You can communicate and things like that.
I don't know if it would fracture. I think that the kind of identity that emerges from internet interactions is probably in some quality of way slightly different from ones which emerge in different ways. I am not sure if fracturing would be the right time to describe that. I would need to think on it. That is a really interesting question, thank you very much.
BRYCE HUEBNER:
So yarn rancour asks, "I am wondering about the role of evidence-based medicine in potentially perpetuating this individualist population average model of neurodivergent's. Does the focus on scientific evidence narrowly define and preclude the possibilities of such an ecological, or relational approach you outlined?"
ROBERT CHAPMAN:
Thank you. That is a brilliant question. I guess if I have understood the question properly, I would want to say that, at least in my understanding and different people have a different understanding of neurodiversity components. My understanding that an ecological model of that functionalism, or something like that would not necessarily rule out. This is one of the reasons I want to separate the medical model from the Caledonian pathology paradigms. I do not think an ecological model would necessarily rule out using this kind of intervention in practice if the individual wanted to. It was certainly orientated more towards seeing functioning and so on and so forth and this functioning as a relational, interdependent, in some sense rather than residing within. In some places, someone may just find it useful to focus on the individual. I do not think it rules this out in any way, I do not know exactly how they would interact between the two. To produce new forms of intervention, if that is what you want to call it. Thanks, that is a really interesting question. It is not something I had thought of in detail before. That is my very preliminary answer.
BRYCE HUEBNER:
Maybe this question from Chris Jones will actually help to drive a little bit more thinking there. So Christos Rs, "as a clinical psychologist who sometimes works with children and young people with a diagnosis of autism. I would be interested in hearing more about how you conceptualise thriving and all flourishing within autism, how you see health professionals role in this respect?"
ROBERT CHAPMAN:
That is a great question. At the moment in a sense, my view of this is quite pessimistic. I think that the idea of autistic thriving has been rendered invisible to a significant extent. I mean this in a sense of what some people might call a form of systemic injustice, or something. The idea of thriving historically as well as in a modern period has often been related or seen as objective features of the species and things at that. Which often means among other things, neurotypical. I think, we have basically, in an important sense, we do not really know what autistic thriving looks like. I am not saying that you cannot recognise a particular manifestation of autistic thriving. It has never had a place in our conceptual map. There was no clear answer that you can give to sort of someone working in a clinic now to say "this is what autistic thriving looks like." At least that is my own view on that. I certainly would say in many ways it is probably going to be different from neurotypical. I would hope that it will be explored relationally with the people they work with to help develop a conception of thriving which fits them and their particular form of neurodivergent. It is also very briefly as well, or to visit itself is such a broad and varied -- autism itself is such a broad and varied group, there cannot be one autistic thriving either. It would probably just be a sample to say there is one of autistic thriving to say there is one kind of human thriving. We need to work to some way of understanding and to be more pluralistic about thriving, so we recognise there are various kinds.
BRYCE HUEBNER:
I have about your questions. I may save them for later. I think there is a lot of really rich territory there. Frederick thanks you for a great talk and then asks you a provocative question, "in how far could one argue that the neurodivergent city paradigms variety is the new normal? It is just a broadening of scope, in other words, does this necessarily overcome the distinction between normal and abnormal? Or does it just suggest that the normal needs to be understood in a slightly different way?"
ROBERT CHAPMAN:
So, I would say, neither of those. It is neither the deduct completely overcomes it, or neither is it that it needs to be understood in a slightly different way. It needs to be understood in a very different way. I do not think that there are exactly what that is going to look like, has not been worked out yet. So, I have been trying to work on what health might mean and what pathology might mean, if it means anything on neurodiversity paradigms. I've spoken to very different neurodiversity specialists other than myself and every person I've spoken to has a different perspective on this. There is nothing coherent on this. My preference is to make normalcy as broad and inclusive as possible. At the same time, if you end up forcing a narrative on people that you are saying "you are not pathological but they prefer to see themselves as pathological" that can be really difficult. Would he want to be called disordered or pathological in some sense. Does it change normalcy? Personally, whether you want to call it normalcy or not, we need to get rid of the concept of there being a brain dysfunction. The idea that a brain cannot go wrong is not one I find appealing. The example I give is infant (unknown term). If doesn't know what this is, when you develop in utero, your skull and brain don't develop and they don't live long at all and there is nothing anyone can do. This is something I'm quite happy to say is a pathology. Every neurodiversity proponent that I have spoken about has spoken of the same thing. If you want to be clear on how we work together, we need to be inclusive, but doesn't deny pathology and has a better way of looking at it in some cases.
BRYCE HUEBNER:
I'm going to take chairs privilege and ask a question. There seems to be what feels to be a productive trench in -- tension, in your view, talking about individual flourishing and thinking about ecological and community structure and what I am trying to think about is how you think about the relationship between individual flourishing and the network of social and ecological structure.
ROBERT CHAPMAN:
That is a great question. It is one I have been trying to come up with a clear answer to four years and I haven't yet. One thing I will say that we should separate the idea of functioning from flourishing. I want to look at that. I think someone can function well in an ecological perspective. You might have somebody who is considered contributing to dysfunction, but is flourishing. A nice example, Ginger Hoffman, the philosopher, is a group of… A thought experience of a company, a business, and she asks a company that is neurotypical. If you look at them all on an individual level, they might be considered functional and that is the standard model. On a group level, it might be considered dysfunctional because if you compare them to a diverse group, they would be more functional because they would be more cognitive and have more recesses -- resources -- to draw upon. They might also have this dysfunction level from an ecological perspective. I think it is helpful to analyse them separately, but I don't really have a very clear way of working this out yet.
BRYCE HUEBNER:
All right. So Lesley Klein asks: I was diagnosed with atypical autism at 60 and I feel I would have benefited from help to improve my interdependency at an early age. Is this against the view of neurodiversity and anti-ABA approaches?
ROBERT CHAPMAN:
It is a really good question. I was speaking of my personal view here. That might be different to other neurodiversity proponents. I'm against the broad pressure to normalise and how it underlines much of our current discourse and science and medical intervention and so forth. I'm not against individuals choosing to do that if they want. I think I'm one of… I'm probably one of the few neurodiversity proponents who I don't mind that much. I don't think a cure for autism is conceptually coherent, but let's put that to one side. I wouldn't want to go on developing it because I don't think autistic people wonder. They want different things. Let's say it was accidentally discovered. If somebody decided to take that he was autistic, they would be welcome from my perspective. I don't think being against normalisation as a form of social pressure is necessary allowing individuals to make these choices. I'm basically very much do not think the ecological perspective clashes with the focus on individual autonomy and individual rights.
BRYCE HUEBNER:
Excellent. So, another question. "Candice neurodiversity versus pathology paradigm approach equally be applied to neurite divergences such as autism or to rats or ADHD?" -- Tourette's.
ROBERT CHAPMAN:
Sorry I did not make that clear. I use autism because that is where much of the discourse has been. I totally think it is used more broadly. I think that is great. The idea begins within the autism community. It is quite interesting. Something worth seeing is every time a new group adopts it, somebody comes along and says that we have reached the boundary of neurodiversity, but other members of a group do adopt it. I remember years ago I thought people, probably due to a prejudice, that I assumed people diagnosed with personality disorders wouldn't want to fight for neurodiversity approaches. I have been proven wrong by a lot of people by increasingly finding that helpful. This is an interesting and great thing to see as it unfolds in front of our eyes. I fully endorse anyone who finds it helpful to think about it from that perspective to adopt this framework. That is a good thing.
BRYCE HUEBNER:
Excellent. For our final question, Jenny Clark thanks you for a fantastic talk. She asks "what are the long-term effects of COVID-19 on our thinking about neurodiversity and disability? For example, an increasing number of people of all ages who have contracted the virus are having long-term symptoms and experiencing disability for the first time. Some of these experiences reach various neurological symptoms and it would be great to hear your thoughts.)
ROBERT CHAPMAN:
That is a really interesting question. I guess we don't understand the long-term effect of COVID yet. I'm not really sure what that would produce. If the suggestion is that some people will have their minds changed, I guess that could be incorporated into a neurodiversity perspective. We just don't know if that will be the case. One thing I would say, it made me think of an article I read a few months back. I cannot remember who wrote it. It was written by the head of a company who had employed either all or mostly autistic employees. It had turned out to be a good thing and worked really well during COVID. They were able to adjust. They were well adjusted to restrictions and things like that, such as working from home. The claim was that even though this is not what he foresaw and that is why he employed them. He employed them for different reasons, but it ended up turning out to be really helpful. One thing people generally think about with the pandemic and disease is genetic variation in a species is a good thing for surviving diseases. The more genetic variation, the better the species will be at surviving because the people might be more resistant to it. I think you could see something similar in the parallel of mental function. Giving support to the idea of the neurological diversity you have in a cultural society the more robust it would be as a whole. That is the ecological perspective. That comes with conservationists, the idea of a normative, individualistic Darwinian model where you eliminate people from the outside of the norm and the ecological perspective with a conservationist that comes with it. The best case scenario, the best case scenario would be thinking like that, but the pandemic has been bad for people who are disabled. I don't know how optimistic we can be about that.
BRYCE HUEBNER:
Thank you for that and thank you for a fantastic talk and session.
JONATHAN:
We will resume after 2:05. Cecilia is in the panel section. Maybe you could turn on your camera and microphone and we can have a chat. A note to the caption team, I gave them a break, but there were requests to keep them going if you would not mind so that everyone on the call to hear what we are discussing. I hope that is OK. August, are you there? Great.
AUGUST GORMAN:
It did not allow me to turn on my video.
JONATHAN:
Welcome to the camera. How do I pronounce your name?
CECILEA MUN:
Cecilia.
JONATHAN:
Are you OK with sharing? Do you understand?
CECILEA MUN:
I need to understand the chat for the questions but not the Q&A?
SPEAKER:
Hello. I'm going to feed the questions on an individual chat and that will come up privately in red and you can see that. I'm going to feed it to you privately and then August, I think August just steps away.
AUGUST GORMAN:
I'm just fixing something.
SPEAKER:
We normally receive a good deal of questions. Someone will come in and I'm going to move into the answers column and if you scroll to the bottom of the answered column, you can see the most recent question we are and you can have the ability to read it while Cecilia is really good to you and if you want to reference it back, you can have it open.
AUGUST GORMAN:
That makes sense.
CECILEA MUN:
I also had a question about pronouns. I use her, or she. August do you use they, them.
AUGUST GORMAN:
I think I put it in the write-up.
CECILEA MUN:
I cannot see it.
AUGUST GORMAN:
I have slides, do I that can I test them out?
SPEAKER:
If you can switch to… Rather than your fullscreen.
CECILEA MUN:
I do not have to worry about toggling my video. Some I will be doing that for me? When August presents, my video will be turned off? I will be muted.
SPEAKER:
You just need to be mute, that is OK.
AUGUST GORMAN:
It is saying only to quit zoom in order to show my slides. I'm going to quickly do that, I suppose. I am going to do that for a quick.
SPEAKER:
Before we start do you think it makes sense to have a copy of August slides?
JONATHAN WOLFF:
August, your back and you are now off mute.
AUGUST GORMAN:
Do you see my slides?
JONATHAN WOLFF:
We do, can you move them forward? That looks good.
So, Cecilea, you do not need to do anything about your video, but you should be able to meet yourself. You will not be on the main screen while August is talking. The Q&A, it is very nice having the two of you, both phases up there during the Q&A. We will keep that.
Are we all OK? I am going to turn off my video and microphone. When we click over to 5 minutes past the hour, Jamie will give the go sign to Cecilea.
SPEAKER:
Yes.
CECILEA MUN:
Hello everyone, thank you for joining us for this session. We have a talk on the neurodiversity paradigms of moral responsibility presented by August Gorman from Princeton University.
Just take a little something about August, he is a trans philosopher of disability. As a fellow at Princeton University in the Centre for human values and health and well-being. Their work focuses on how traditional debates about consent translate with cycle possibilities.
AUGUST GORMAN:
Thank you so much, Cecilea. I want to thank Shelley for inviting me to speak as part of this incredible lineup. My talk today, it is going to flow quite nicely from our previous talk. I am going to preview sort of the big idea from a book manuscript that I am working on that uses a neurodiversity lens to articulate the new theory of moral responsibility.
CECILEA MUN:
I forgot to mention that there is closed captions at the bottom of the screen if you go to the CC. Also, if you have questions during the Q&A please type in your question in the Q&A using the Q&A button. I will go ahead and read that August he will respond.
AUGUST GORMAN:
Great! Thank you so much. OK, so my plan for this talk is to do three things. First, I am going to introduce two ways to think about agents with psychological differences that impact the functioning. One that treats this kind of difference as defective and one that treats it as a natural variance. Second, I'm going to show how the differences defect paradigms, or I might say the pathology paradigms is implicit in the very foundations of the philosophy lyrics are on moral responsibility. -- Literature on moral response ability. I'm going to start the beginning of a sketch on how the moral responsibility literature might change a neurodiversity paragon and what the benefits of doing that might be. I will be glossing over some of the finer details, because my goal will be to give you a sense of the bigger picture idea. I'm happy to delve sort of deeper into the specifics of the Q&A. So in order to talk to the different models, we are thinking about different types of differential differences. I want to start by talking about a different kind of difference. Then working by analogy. OK, I'm going to ask you to do something that might seem a little bit strange. I want you to close your eyes and try to picture a red star. Close your eyes, try to picture a red star, got it. OK, so what did you see when you close your eyes. In your minds eye. Did you see a perfectly clear red star, like number six, or did you see something fainter, or perhaps if you are like me, you sort something closer to number one. You saw absolutely nothing at all. I use as an example, because much of commonsense wisdom and philosophy seem to concur. That being able to visually imagine things that are not present is a crucial and ubiquitous human capacity. The social world we live in is a set up as though this is the case, we advise people with insomnia to count sheep. People who have lost their wallets to retrace their steps. Assuming they will be using their minds eye to witness the sheep jumping over the fence. To retrace the steps of their day. Philosophers have also built many theories that take is foundational, Aristotle's premise that "it is impossible to think without an image." Anyone you claim to not have this ability, you might think, would have some sort of very strange brain defect indeed. It turns out, actually that this is just not true. It has not been fully realised until recently. Visualising abilities naturally range across a spectrum from complete mind blindness to movielike accuracy. So some people, they tell me, when they close their eyes, they can watch almost like a video of something happening. I have no idea what that will be like, I close my eyes, there is nothing visual there whatsoever. So, what is my point here? There are two different ways that we can think about this sort of difference. We might take a difference as defect model. Why? Where there is some capacity that we take to be pretty fundamental to being human and then we think, well sadly there are just some people that something wrong with them. Or, we might adapt a neurodiversity model according to which there just happens to be some natural human variance. In terms of visualising ability and this is just sort of a neutrally balanced fact. Note that people who do not have a b visualising abilities do use other strategies to do the same tasks, so they are starting to do some research and they tested a mental rotation task where you are given some sort of test and you see a 3D shape represented anyhow to choose which one represents it turned around. There she found that people who cannot visualise do these tasks are just as well, they just use other sorts of mental resources to do that. It takes a bit longer to do it. They deal with the same amount of accuracy. What I want you to note here is that there are some pretty clear differences in the ethical landscape that is implied by these two different pictures. So the difference as defect model, it kind of encourages and attitudes of pity. Because, it puts the onus on the person who falls outside of the norm to sort of advocate for themselves as well. These are often people from a stigmatised group. It sort of assumed that the rest of us and generally speaking are the normal people. These are the important capacities. The neurodiversity model on the other hand, it first of all, it issues a sharp divide between normal agents and others. It holds that we as people in general tend to be different in degree and not in kind. In this way, it doesn't exhorted size differences, we can ask if our society is set up to cater better to people on sums part of the spectrum. How this might disable certain people, but our working assumption should be that people also have other ways of navigating the world, if those ways are made available to them. To see just sort of a clear ethical implication here. Imagine you have a budget to spend on the mental wellness programs in the workplace. Well, it seems clear that if we have the option, we should try to use the neurodiversity model and realise, since not everybody exalts visualising, we should not spend the whole budget on a guided visualisation meditation room. There are some people this is going to do nothing for. That seems pretty clearly right to me. I neurodiversity model, also is going to encourage us to check our assumptions, before we make judgements about people. Before we blame them for something. For example, if we take the neurodiversity model, you should not be so quick to accuse someone who say cannot picture their wife's face. You should not think, "R, that person clearly doesn't care enough about their Y." Once you realise that people just vary along a spectrum for this sort of capacity. I think it seems like kind of an easy sell to say we should aim to operate and a neurodiversity model as much as we can, when it comes to these sorts of ethical questions. That had to do with areas in visualising ability. My real claim though is that we should do those same for variance in a gentle function, attention, memory, executive function, emotional mind reading ability, the impact of trauma. The sorts of things. I think we should take a similar tact with these. But, I think the need for a shift in this domain is especially hard to see in the current world and a moral responsibility literature. Competence at these capacities is thought to be fundamental to what even makes us responsible individuals. This is sort of the way that literature is set up. So, I think the difference is defect paradigms, what we may call their pathology paradigms is really complicit in many I want to focus on the actions that people are appraised for. In principle. This is I think a very fundamental issue and moral responsibility, being able to illustrate how the pathology paradigm functions here should show us how deeply seated this paradigm is in literature. I want to talk about what the current dialectic looks like. Take the following case. Suppose there is a person who has Tourette's syndrome and they have a particular kicking behaviour where they frequently utter obscenity. I'm hesitant to use this example, because only about 10% with Tourette's syndrome has this tick, but they have a ethical implication. I do want to know that. I think it is a stereotype as it is the most common kind, but it is not. This is my case, though. A person who has this behaviour has the urge to utter a slur that targets a minority person who is in the room but going to be leaving shortly. Let's suppose this person does it and says it before the person leaves the room. The way philosophers of moral responsibility might handle this is to say one of two things. They might say "this person clearly does not have control over their actions and they are acting involuntarily and it is a twitch. They are out of control and we should not blame them. It is not appropriate. We should pity this person. It is just unfortunate.". When you think about the lived experience, many people report them as being involuntary responses to a buildup of internal pressure. They report they are able to withhold it for a short period of time, although it is psychologically painful to do so. Returning to the current dialectic, the only option is to say "OK, I guess they are autonomous and in control. They could have held off, but they didn't. I guess they are fully blameworthy for saying a horrible thing like anybody else would be." That does not seem right. Neither of these are the right way to handle it. Apparently we only have these two options, either the person is defective, rendered completely non-autonomous by their medical condition and lack control over what they do, with their personal responsibility and their excuses, but what I want to do is sketch a different way entirely of looking at the case. I want to draw out one way we might use a neurodiversity paradigm, but it is inspired in a way that gets you further.. I want to look at the environmental condition in which agents act. Lots of things might count of the environment. There is one door to a room and the person cannot leave the room without pushing past other people in the doorway. That is part of the agent's environment, the agency, but it does constrain which action is available for the agent. It has affects on the terrain that person has been aggregate with their industry. There are some mental features that also might count as part of the background condition that an agent has to navigate. Let's talk about common examples. Imagine extreme exhaustion or the urge to scratch an itch. We revealed deep truths about a person, and they might manage these things indirectly, and make sure she gets a lot of sleep and that might change it, or she might put aloe on her itchy skin and that will mean she doesn't have an urge to itch. This might reveal something, but the bare fact is that someone is exhausted doesn't tell us something about her. Using the neurodiversity model, I want to suggest the boundary between environment and agent differs a little bit in each person. There is natural variant here which on its own is neither good or bad. I want to say a person who has this tic has a part of their psyche that not all people have. The urge to utter obscene language. I think we should think of this just like extreme exhaustion or the urge to scratch an itch. It reveals something especially deep about the person. If it causes them to act, you might think about it, like how the urge to scratch and it causes someone to do that. It is not something deeply a genteel, but perhaps it might be managed in some way. -- agential. This is obscure, but what distinguishes agency from environment? I have an account, but I cannot go into too many details. What I want to do is give you a bigger picture sense of how this is important. To return to this question, which actions our people, in principle, approachable for? -- Appraiseable. You might fall asleep from exhaustion or scratch an itch. Just to give you a bit more meat on the bones of this idea, the basic idea is that the agential are going to be loosely connected to the preferences and priorities and reveal or express something about them. The crucial part for our purposes, I think we can be responsible for managing and navigating our environment for failing to do so. Take an example case where you walk into a room and there is a slur written on the board. You didn't write it, but you know it looks like you did when somebody of that target walks into the room. Perhaps you want to raise it or you could be responsible for failing to do so. It is not the same as if you had actually written it, but this different thing, managing environment, you could be guilty of. I think it is at least possible that a person with Tourette's syndrome could be responsible for insulting someone due to not temporarily repressing an urge to say a slur, but I want to say a couple of giant caveats. One is that it is a very different thing to be responsible for saying a slur.. This is a big analogy. It is not cost free to suppress and urge. It is not cost free to cancel the implication by explaining that you have Tourette's syndrome. Not in our current society. In the whiteboard case, it is probably not that hard to erase the thing written on the whiteboard. Not so in this case of tourette's. Who takes on the cost? It is difficult to explain to people "it is going to seem like I'm saying a horrible thing, but really I have Tourette's syndrome and this is what it means. It is not obvious the operating before differences of the defect model, but we might think we should pity that person and it is kind of on them to explain it and take care of these costs and help if we can, but it is their problem. I don't think we should think like that. I think we should think about questions of social justice, and importantly I think we cannot do that without first answering some more basic questions of social justice that set the norms on which our moral responsibility system runs. There is a two-step process that we can do with any kind of agential difference, but it will bring the political nature of our norms of blame into the foreground. The first imaginative task is to imagine everyone in the world had to read syndrome. What would the responsibility norms look like? Would they assume that uttering obscenity would be directed at each other, probably not. They would be accepted as a normal part of life and they would operate on a norm, I would imagine. They need further evidence that the person meant to be hateful in saying something than just the fact it was uttered. That is interesting. It is the fact that having Tourette's syndrome is a minority status that makes it the fact there is a problem in this case at all. If that is right, it is certainly not obvious that we don't need to share the burdens. The next question I think we should be asking is if we don't assume any one particular way that the balance between agency and environment might be situated, we don't assume anyone particular with a neurological setup that somebody would have, what norms would we come up with for this situation? It is not obvious. These are difficult questions. A general lesson we might draw from asking these questions is to say something like this. Until it is truly costless, or much closer to costless, to disclose agent shield differences, we should be more cautious than we usually are in our contributions and judgements and blame. I think there is an idea of working towards (inaudible) of reading what people are doing, while at the same time realising we are not there yet and we have nonideal theory and we realise it is not costless to expose agential differences. They won't even be aware of them. We have to look at access issues in terms of mental health and we have to look at all of these costs we have in our current system. We have to take those on board. In general, we are going to find that we want to relax some of our initial gut judgements we have about people since we tend to have in mind these ideal agent picture. We think we can go through life as though we know how to bring the social meanings of people's actions and maybe when we don't. Whether you are with me on the specifics of this case or not, my bigger point is that the interesting and important questions about burdens, social justice issues and who takes on the costs, and how do we make it more stigma free to disclose differences and how we interact, and given those imperfections, those are obscure by the current dialectic. There is no room to raise them because if you remember the current dialectic, it just gives two options. We have a person who said a slur from Tourette's syndrome and either they are completely out of control and not responsible, or they are fully responsible. I think that there are really interesting terrain and interesting questions that we need to pose and that we need to work on that I just really hard to see. When we are operating on this current paradigms. I think part of the problem is that the way the moral responsibility literature has proceeded, this is the tiny bit of the genealogy of the moral responsibility literature. It is talked about people with agenital differences and psychological disability, but it usually talks about these people as examples of people who lack some sort of capacity and people take some capacity that they want to coin as fundamental to being a responsible agent. They will look at this group of people and they say, "surely we should not blame them. It must be because they are not responsible agents. They lack this fundamental capacity." That is sort of the way this literature has developed. It just makes it very difficult to see what the ethics of interacting with people who have neurological differences, what those ethics are. Since we have sort of written people who do not fit this model of the ideal responsible agent out of the conversation. Importantly. I think there are plenty of questions to be worked out still. About what a new and better system would look like. I think that those are the discussions that I would really love to be having. I think that the need for a shift to a neurodiversity paradigms of this literature is very real and hopefully, it will open up a richer set of questions about how we ought to interact with each other. Across spectrums and differences. OK, I think I will endeavour now. I will take Q&A. Thanks.
CECILEA MUN:
Thank you very much, August. That was very inspiring. I am just going to go ahead and start the first question. The first question is from regiment Carpenter, the question is, "how would your account respond to personhood that reject the substantive… It may argue against any fixed distinction between themselves and environment. It seems that your accounts of agency relies on a distinction between parts of the psychology within and without an agent's control. I am wondering whether the notion of control often used within this literature might be more central to the problem. I would love to hear your thoughts on this."
AUGUST GORMAN:
Thanks so much, that is an excellent question. So I think there are two things. I do want to advance some claims about this distinction between itself and environment. I do think that that is in principle separable from the larger critique that I want to make up perhaps you're right here. It is this notion of simplistic control. Of agenital difference in having someone being out of control of themselves. That is really where the neurodiversity based critique is centred, right? I think that I want to sketch what it might look like to have a neurodiversity inspired paradigms to talk about it. You might critique that for other reasons. I do think there is something interesting to say about the idea that there is this fixed boundary between self and environment. I am not sure that I even want to claim that. I may not go so far as being in a poststructuralist theory in terms of the flexibility between itself and environments. Even without going that far, I think that sometimes people are able to modify the boundary between self and environments. I was asked a really interesting question was about people who want to reclaim part of their ticking behaviour as something. People who use their tics as part of artistic expression for example. Could you take this thing that I am claiming as part of the environment and to somehow incorporate it into part of yourself. I think that there is some room to think about this as… Sorry. Timer. As a flexible boundary. More so than it may have appeared in my rough sketch. So anyway, just to summarise, to quick things. One is that, yes, I think you can take on board my sort of neurodiversity critique without accepting all of the details of my self environment picture. Two, I am open to thinking about the self environment picture being a bit more flexible. Then what it may have appeared.
CECILEA MUN:
Our next question, Leslie Klein asked, she first thank you for the great talk and then asked, "there is also the point of view of the person affected by the slur. Isn't it true that it is still a slur and may have to be dealt with, but taking into account the agenital differences in the present making the slur, but instant legislation."
AUGUST GORMAN:
Absolutely, I do not make that clear, but I think that is why this is such an interesting and important question and why I have used this particular case to illustrate. I think the issues here are really thorny. It is absolutely right, we cannot discount the perspective of a person who has just had a slur. I think we need to think about it in order to really answer the ethics of blame and the particular case. You need to know more details, write about these people's identities. Does it matter if a person with Tourette syndrome is part of the relevant minority group? Does it matter if that person is part of the oppressive class that is oppressing people of that particular group. Those questions are different, right? From just the ethics of, the ethics of slurs in general. What about the ethics of managing sort of accidentally saying slurs in this way. I do not know. I do not ultimately know how we settle those questions. I think in order to have a productive conversation that incorporates the interests of these groups. These different groups have to be taken into account. We have to get clear about… We get to a clear question about what sort of question we are asking in terms of a person with Tourette's syndrome, or some other type of agenital difference. We have to get clear about that we are asking a different question than just the question of, you know, what are the ethics of slurs in this situation. Ultimately at the end of the day, there might be different sorts of situations where ultimately it does make sense to say, "look, this is the kind of case where you need to be able to manage saying this. If it is me, I need to recognise that this is an extremely hateful word and it is really unfortunate and even when I had the best of intentions, some people may not understand and there are real costs so that in the world." We need to be able to do the social justice philosophy, so that it doesn't automatically become the responsibility of the person, I think. Who has the a genital condition.
CECILEA MUN:
Can you explain why the person with direct is not held responsible for the associated feeling. It seems that we can hold persons are not responsible, but not pity them. Does this idea come about other stress and the account to blame?
AUGUST GORMAN:
I may be given a bit of a caricature in a way. You are right to press me on this. A caricature of the idea that if someone is exempt from blame, we have to pity them. It seems to imply that sort of picture of the world to me and I think that is why I am saying it seems like I guess we have to just pity them. You are right, you could have a view that such people are just completely exempt, due to the fact that they lack some important capacity, but not think that you have to pity them. I do think on the question about does it come out of Strauss only on account of blame. I do think there is something problematic about the way people often talk about taking the objective attitude on a stress only on account of blame. The idea is supposed to be we cannot have a full fledged kind of relationship with a person who does not have this sort of capacity. We take the objective attitude and we are really just sort of treating them, almost like an animal. These sorts of words are used. I guess, to me that implies that this kind of treating someone by managing them, almost treating them like an animal, or a small child, sort of implies this feeling of we have to pity them. Perhaps you could, you could have a very different attitude, right? Even Strauss and says, you may take on that objective attitude if you are a therapist for example. Therapies are not pitting their clients, they are trying to work with them to shape them in certain ways. One might also take an objective attitude towards some part of themselves. Without having pity. There might be room to work within and change those attitudes. To change into something more productive. I myself am not inclined to go that way, because I think… I have not fully articulated this… There is something about it to me that just seems somewhat conceptually tied to a pathology model. I might be wrong about that. I might be wrong about that. There seems to be an awfully close connection, perhaps it is because there is a sort of disengagement with the person as an agent, in some sense. Which, I find troubling. This is an excellent question that I think I want to think more about. So thank you.
CECILEA MUN:
Thank you as well. Claire Rs, "just wondering if you make a distinction between intention and harm in considering blame. With my NAD son, we always talked about how explanations for an action, i.e. I did not note saying that would hurt your feelings mattered for intention and thus impact blame. When it comes to the harm, the reasons do not mean that the reasons a person's feelings are no longer hurt."
AUGUST GORMAN:
I think this is a good commonsense way of drying out a distinction that I think is important. So, it is perhaps a way that we have in common parlance of talking about the sort of distinction, I might be after when I am saying something like "it is just very different. Someone who wants to say a slur just in order to be hateful versus the person who wants to say a slur, because they have this buildup of energy that is giving them that urge to discharge this tick, otherwise they will go through a lot of psychological distress otherwise." That is right I think. That is two very different types of intent. What is nice about this commonsense way of talking about it is you can say, "look, even though there are different types of intent, there is still a harm that is present." That said, I would not want to subscribe to the view that sort of no matter the intense, the harm is the only thing that matters. The harm isn't inevitable. We could have built a world in which it is very easy for people who have correct syndrome to be open and enough about it. They won't be stuck in a room and the person has the syndrome and they will be harmed. I don't want to go so far as to say "it is just your personal responsibility for what ever ends up happening." In some sense, it is all our responsibility to manage that. One thing I like about this, talking about self and environment, is that we all might have some responsibility to manage environments. That is clear when we take it out of somebody's agency, but the situation is related to self and environment but they don't interact with the environment and other people can shape the way social messages are received. There are things I like about that distinction, but also more nuanced.
CECILEA MUN:
We have a follow-up. They ask, in this topic of responsibility, it is interesting the responsibility that is deposited on the parents who have a neuro-diverse in child. Parents have that issue. What is the perspective? Thank you for the presentation.
AUGUST GORMAN:
This is really interesting. I'm interested in this topic from a couple of perspectives at the same time. One is being involved it in responsibility literature and noticing implicit differences in defect thinking and wanting to excavate that. Another perspective is just being a person who navigates the world. I have ADHD, I have an autistic partner, and we often have this interaction where we have to navigate these issues. We have to decide how to distribute the burden of how we can interpret and misinterpret each other. They are very real-world questions and they are real ethical interpersonal issues that I think are quite common. I really think we have different ways of navigating the world. The question of parents who have children who are neurologically different is an interesting one. In my relationship with my partner, we try to balance things as easily as we can. I want to remember when you don't mean it when you say a thing, it just happens. It is irritable when you have a sensory thing going on. We can do that in an even way. As a parent, is putting on additional responsibility. I think there is an interesting duality where people who are some sort of neuro-diverse minority have two cope with, which is trying to understand themselves at being able to pass their own intent versus what it might seem very intent was, and also navigating what intent their actions will seem to have, given the paradigms of the norms of society has. There is a difficult and important balancing act between explaining to children whom I the neurodivergent in a way that actions will most likely be interpreted. -- Might be. We are working towards a more just world where people might be able to understand a different social meaning for action. It is a really tough job and parenting is a tough job. I think that is my answer there.
CECILEA MUN:
If I can ask a follow-up. It seems to be the case that this relationship between others and self is important in determining responsibility. It also determines agential responsibility. What is the agent responsible for? It seems the input, not just that environment, but the interaction. What others are responsible for seems to define what one is responsible for. I don't think people think of individualistic ethics.
AUGUST GORMAN:
I love that you said that. What is also going in my book is aware I'm looking at the impact of trauma on agency and this is a case that makes clear… If we ask questions like "what would society look like if we had adequate resources for trauma survivors?" We want to ask these questions if they had a traumatic past, and should we hold them responsible for what they did even though they had a dramatic past? That I think is a nice example of what you are saying. What about our obligations as a society to give people resources to handle trauma? This is a case of who is responsible and where are the boundaries of that situation? They are murky. Thank you, a great question.
SYLVIE RANCON:
We have Jenny who asks… First, she thanks you for your insightful presentation, and asks if you could clarify how somebody goes around determining the context of certain features of a person are to be counted as a someone is the agential sphere and where they are not. --
CECILEA MUN:
Exhaustion can be a key component of a disability. You can consider chronic fatigue or MND.
AUGUST GORMAN:
Of this is a great question. I do have a lot more to say but I won't be able to say it entirely right now about how you determine the difference between agent and environment. I have a pretty complex view of this and I hinted that in order for the account as agential, it needs to be linked in some way to a purpose, and a person's preferences and priorities. It does not need to be as b as some people think. You don't need to reflect on your desires and choose one and act on it. We have the Harry Frankfurt picture. I think the process can be much less intentional. I have a particular way I like to carve that distinction. That said, I think… I truly believe people are quite individual on a lot of these metrics, so if we go back to this goofy picture with the different agents, I think the shape of agency is really going to look a bit different in each person. Even things like exhaustion, people will have different relationships. I think that is at -- exactly right. Since this is different in different people, we are going to want to say different things about different cases. I wish I had more to say about exhaustion and chronic fatigue. I don't at this moment, but it is something I should investigate. I think that is an interesting case where managing exhaustion is going to be a prominent feature in someone's life. Then we want to think about how we would equitably distribute those costs and how that would impact blame. One of the reasons I used that as an example is I noticed in my own life that there are differences in the way people experience exhaustion. For some people, it is more agential. I am choosing to go to sleep. If I don't, I can stay up for a long time. Some people might fall asleep. Depending on the agential relationship you have, even with something like exhaustion, it can be a big difference if somebody falls asleep in what you are saying, and you can take that as disrespect or not. We do need to be careful, even about easy or obvious seeming examples that we are taking into a diversity of ranges as they interact in this experience.
CECILEA MUN:
I am thinking we are out of time. Thank you for your wonderful presentation. You gave us a lot to think about. The audience, please stay tuned for the next presentation and have a good day.
JONATHAN WOLFF:
Can I thank you. A really fantastic thing. We didn't want to spend long on this. Thank you on behalf of the audience. Really fabulous. The next session starts at five minutes past the hour and the presentation is by Joshua who is now with us. Would you like to turn on your camera and microphone? We can introduce you.
JOSHUA ST PIERRE:
Hello.
JONATHAN WOLFF:
Shelley is back with us. You are chair for the next session, Shelley. We do not need to run through the drill. With all of that, Joshua, do you have some slides?
JOSHUA ST PIERRE:
I have a couple but I will be going back and forth between slides and being on the screen if that is OK.
SPEAKER:
Can you test sharing your slides to make sure it appears correctly and that the advance works? Great stuff.
JOSHUA ST PIERRE:
Is that OK?
JONATHAN WOLFF:
That is fine.
JOSHUA ST PIERRE:
OK.
JONATHAN WOLFF:
I like the look of the slides. Interesting presentation. We are in good shape. Katie?
SPEAKER:
I am here.
JONATHAN WOLFF:
If you are ready, I can turn off my video and microphone and I can leave things with Shelley. Over to you and Joshua.
SHIRLEY WONG:We will start at five minutes past.
JOSHUA ST PIERRE:
Sorry I missed our meeting this morning. I was sleeping. Hopefully it was OK.
SPEAKER:
That's OK. I think some others have shown up. It has been a few years since we have seen each other and we are doing well. I'm happy that you have been forging ahead with your work and career.
JOSHUA ST PIERRE:
Yes. I'm extremely fortunate and I did not know if I would have a career. I'm also excited about having a chance to write stuff. It has been fun, despite the dream, awesome. It has been good.
SHELLEY L TREMAIN:
OK, I'm going to stop talking now and let you take a few minutes and look over your stuff. OK? I will exit the screen.
SHELLEY L TREMAIN:
Would you like me to start? Maybe we will wait just one more minutes.
JOSHUA ST PIERRE:
My audio is OK, surely?
SHELLEY L TREMAIN:
Yes, it is. OK, we are going to start. So first of all, I want to say that I have found the talks by August and Robert amazing. I thought that Cecilia and Bryce both did a fantastic job of chairing. I am very grateful. It is now my great pleasure to introduce our next speaker, a next presenter whose preferred pronouns are he and him. I first met Joshua at a Canadian Society for women in philosophy conference several years ago. He gave a fascinating interview with me in 2015 and the dialogues on disability series. Joshua who holds a PhD in philosophy from the University of Alberta, his character research chair in disability studies and assistant professor of political science at the University of Alberta. He is at the intersection of critical disability studies and temporary political theory and feminist theory. He has published on topics such as the phenomenology of dysfluency, history of speech-language pathology, eugenics and theory in a variety of venues. Including Hypatia, co-studies and the Journal of literary and cultural distant political studies. Please join me in welcoming Joshua St Pierre and gives the Q&A button at the bottom of your screen to submit questions and comments for Joshua, Katie Moderator. A reminder that captioning is available through the CC button which can also be found at the bottom of your screen. Just to let you know, the font size for captions is adjustable. Take it away, Joshua.
JOSHUA ST PIERRE:
Thank you so much Shelley for that introduction and thank you for having me here this morning. I am very happy to be here. Let me start by acknowledging that I am the University of Alberta are situated on territory and traditional lands of many indigenous peoples including the back foot and others. This acknowledgement, I think is especially important in online spaces, such as these and they tend to remove us from our relation to place. I am speaking to present concerns, one thesis of this talk I am going to give this morning is that as we become talking heads, we become, we become deed territory realised, torn from the earth of the body and from our constituent relations and collective sites of enunciation. Part of this project is to plunge communication back into its materiality. I note before I get going on accessibility. I am going to be going back and forth between using the slides for this talk and the slides are accessible both for you and for myself. As a speaker. I am also going to at times, not be using size at all and just being a talking head, because I think that is important to this project too. So, first my speech is unpredictable in time and so I have practised this, but I will see how far I get through it today. So the talk is basically an introduction to a book project that is currently under review. It is called Cheap Talk and the Comedic Edges of Communication supper and use it as a critical lens to talk how talk is being rendered cheap in two ways. The first is the political aspect of "talk is cheap." That refers to empty talk that is not tied to action and the second, economic part of the cheapening is where talk has been rendered cheap, cheap resource stream under neoliberalism. My argument is that at least two modes of cheapening arguably are tightly connected. In this particular session, I will focus mainly on the first aspect on the political cheapening and we will approach it by drawing a few connections between three figures. I am the talking head, I am the troll and the stutterer. I am the stutterer of course, the stutterer cause to influence the subjects like myself. I am the troll, referring broadly to the phenomenon of trolling we have become familiar with. The talking head comes from the television pundit reading from a script, or later shouting out talking points. What is cheap talk? One of the big influences for this project is this quote from Deleuze. "We don't suffer these days from any lack of communication, but rather from all the forces making us say things when we have nothing much to say." I want to think about this morning about some of these forces that Deleuze is talking about. Social media is of course low hanging fruit here. Cheap talk can be found everywhere. Social media is part of the story in so far as it forms a component part of the communicative assemblages from which we speak. I am here and most interested in the biopolitical technologies that habituate within bodies. To make fleshy communication compatible with the smooth norms and protocols that information machines. In other words, this project is a genealogy that seeks to trace the neo-liberal technologies of the cheapening talk. Here again, we can think of the political cheapening and talk is being disconnected from both, from both action and from truth. We also discussed the ways certain info capitalism has made communication internal to these processes of accumulation. That is to say the communicative rhythms of the body have to be made on repeatable and predictable and quick and form a capital and speech itself starts to function unlike capital in so far as it must be unfrozen from bodies and constantly deregulate it. Combined I'm taking these forces together in the context of the quote and we have what we can call the force of the easily saleable and that shows a difference between speakers and among other things. This force of the easily saleable shapes are made other wide possible to speak or gets to be heard as a speaker. I want to explore this project through three figures. Under the talking head, the trial and the stutterer. They have been signposted on this map between the smooth talker and the ball shutter and the shit talker. I will stop the screen for a minute. What is a talking head? In the most banal sense, the talking head, an entity that reads script with an authoritative voice in order to translate it into informed information. A talking head is the nexus of information. It emits snappy soundbites and attracts attention in capital. A good talking head does both aesthetic and communicative labour. While increasing the normalising flavour in order to produce the friction of effortless contact and universal collectability. Let me be honest here. I'm a defective talking head. My town juts out uncontrollably and my face scrunch is up and I'm a deformed talking head. I'm temporarily unpredictable. I invoke affect, but the wrong kind of effect. I don't relay information smoothly. Unlike some stutterers, such as Jo Biden, I never overcame my stuttering and wasn't ever rehabilitated into a serviceable talking head. To go back to the PowerPoint, what is a talking head? Well, on a second pass, a talking head is universally interface a ball automatic connection machine. This is a rough definition that I am giving here. A talking head is a weird being. This thing that spews the soundbites. The thing about a talking head is it doesn't appear, but it has to be produced and it has to be produced and repaired over time. Info therapy uses is the term I have been using to describe the mechanisms that we talk about. We can think here of two parts. Info therapy uses is a collision of technology of speech direction that were produced in the 19th century and put into service in formation. In good fashion, the federal labour for a talking head falls upon the individual self. Something important here to pay attention to, talking heads are not confined to official channels on cable news since a local radio station as always says we are all invited to become talking heads and "join the conversation", or to "make your voice heard". These imperatives, I'm obscured on the more subtle ways in this force of communication and work. Getting to the point about becoming a talking head in a different way. Info-therapy, the question is not are you a talking head, but how good of a talking head are you? We can talk about what a talking head does. What is the function? In terms of informational contact, the talking head, the functions to relay order woods. You have to forgive me, I'm just going to go over the theory really quickly here. On the order word, it is a basic linguistic unit. It is important to believe. You simulate it order would. This is a semiotic and gives an order organised cessation to the world in reference to dominant grammar and a social obligation. A good example is to think of a preschool teacher who makes comments of what boys do or boys don't do and thereby prescribing what is possible to think and feel. We already have it here on the screen. In the conversation. This imperative actually over cells the order. Here, communication is always and already the position as an unquestionable good to resist. We can also think the order word is a ready-made idea. This is most easily expressible in words. This has been a useful thing to work with and as a ready-made and easily expressible idea, a stock phrase and ideas that circulate through repetition to prescribe a standardised grammar of what can be thought and done within the world. Talking heads, I think, relay order words and prefabricated problems and prefabricated solutions that have habituated a response. Talking on the relation between the talking heads and the order word is most obvious in places like cable news where the heads repeat and shout their talking points in the hope that they stick through our heads. This relation goes deeper, I think. Talking heads of all kinds enter into codependent relationships with order words because ready-made ideas in the form of cliches, stock phrases, talking points, or other soundbites are readily intelligible and resonate most widely. This cuts both ways. Since the talking head becomes ensnared by the ordering word. What can be said or thought or what can be problemised is the easily expressible idea. As a result, we have this quote already from 1945 that describes many of my own experiences. I have engaged with talking heads and trolls. It seems telling to me that we cannot tell if this quote is describing a talking head or a troll. This is symptomatic of a cheap talk. It is always cut from or lacks access to the problematic. In its structural relation to the easily said and as the talking head and detaches from itself as a self relation of truth and starts to sound more troll -like. Troll again is as the Frankfurt has argued, it is… A troll is abortion to an abortion it is different from a… The bushes are it thoroughly unconnected with a concern with the truth. -- bull shitter. Trump is merely a symptom of cheap talk. He is instructive at this point because he epitomises so well the overlap between talking head and troll. Trump is actually quite a sloppy talking head that threatens to expose this mundane function of passing. When pressed to defend his words, he refuses to be subject to his own enunciation and insists through repetition and saying "many are saying." This points to a problem, or a crisis as can be said with Parisian. Parrhesia describes frank, honest, open, or courageous speech. He was in the arithmetic class. Ancient Greece had its own crisis of Parrhesia when democracy gave everyone access to the stage under an axiom of formal equality. He was speaking on the truth? He was the bearer of Parrhesia. I think that, I think that it proves its own crisis of Parrhesia with trans own flood of information. This I think is a problem and not just the difficulty of recognising trees, but also concerns the strategic erosion of self inflation is needed to bare the truth. This crisis I think is apparent and with both talking heads and trolls, trolls alike. Claim their speech to be a Parrhesia of some kind. This crisis is apparent, I think with all of our cheap talk and this is what Foucault would call ignorant outspokenness. The person who speaks Parrhesia makes a double packed with themselves. Packed both to the utterance and also to its consequence, right? This is precisely what the talking head and troll will refuse. After all, talking points change. So we can compare the Parrhesia with the talking head of the troll who says, "whoa! I do not write that, I'm just saying what I heard! Could you tell I was joking?" Let's recap. The problem of cheap talk for social change. I think can be formally cited like this. So the first problem is that we must become a talking head to be heard and to be recognised as a social and political agents. At that point, one can only aspire to be a soundbite. In addition, this already exclusionary process demonstrates the kind of truth that can be told as a disabled subject. The second problem is that of artificial equality. In the fact that, the fact that neoliberalism tends to convey voices as perspectives under these artificial banners. So even if we'd go even if we do become serviceable talking heads with enough therapy. Speaking out in in itself is just adding, it is just adding to the problem and in a certain way without transforming the undefined conditions. The third problem, if it is a problem is that there are some truths that cannot be spoken as a talking head, I think. There are some truths that can't be easily said there are some trees that can't even be said. So how do we hold space for the not easily saleable. How do we learn to speak, the not easily saleable. Let me put this problem in a different way. We are given this problem, what is a shitty talker to do in the specific ecology of conversation. Faced with the options of either being a failed talking head, or being a really bad troll. Again, my starter can be interpreted as trolling as intentional market. What is a shitty talking to do. One suggestion is to add ramps to the political stage to make it more accessible, to make it more accessible for dysfluent voices. In other words, to widen the the deliberation. This is only important strategy, however I am also interested in the other strategy to widen the range of political action itself and to call to call the stage itself into question. A better question is how might dysfluent voices speak, or better in body, or live, critique in the age of info therapeutic dominance. Talking heads, trolls and information overload. I know that I am at the end of my time here, so I am just going to give just a couple of signals of where this goes. Let me end by saying that the cynics offered important resources for the ancient Parrhesia that I think remain quite relevant. The cynic was the anti-talking head who lived the truth, who spoke the truth, but not with their head and with speech, primarily, but staged the Parrhesia and staged this pact of Parrhesia within their bodies doing wild things, including such as shooting in the street. -- shitting in the street. It calls on other organs of the body to manifest truth as an embodied practice. This I think. There are really important resources for thinking, for thinking about and re-tuning ourselves again to the materiality of speech.
SHELLEY L TREMAIN:
Thank you very much, Joshua. I am now going to take some questions, but first I want to ask a question myself, if I may. I wonder if you could address the issue of fluency and dysfluency and how it relates to rational deliberation, especially with respect to the discipline of philosophy. Thinking of I have seen a number of, a number of job postings over the last several years, which will say something like must be fluent in English or must be fluent and I often think of you and I see those job postings, because I have heard you speak and I have read some of your writings on dysfluency, so could you address that before we address some of the questions?
JOSHUA ST PIERRE:
Sure, I'm happy to. Yes, so I think that fluency and… I think part of the problem is that fluid communication as I said in the talk has become an unquestionable good in all kinds of ways. It has become an unquestionable social good, psychological good, ethical good. It makes it hard to put yourself on the other side, right? Who would be against fluent communication. He would be on the side of misunderstanding and breakdown? I think part of the problem is that fluent communication like this really hegemonic or holdovers. I think fluent communication has just become so integral to capitalism. We have stopped even, even having resources to question it. When I discuss that communication is a prerequisite for a job application, this is becoming more common, but we are talking about a very certain kind of communication that we are after here. It is not effective communication. This liberal idea of an individual and free communicator that can stand on his own feet. I'm not really answering your question…
SHELLEY L TREMAIN:
That is good.
JOSHUA ST PIERRE:
I recognise it as a problem.
SHELLEY L TREMAIN:
I am going to give you a question from Benjamin Carpenter. Benjamin has written "your discussion on cheap talk is really fascinating. I'm not sure if this is a useful question, but it reminds me of the account of political speech. She divides from idle talk. There appears to be a lot of connections between this and your use of it to lose. --Delueze. I would love to hear your thoughts."
JOSHUA ST PIERRE:
It is interesting to me that a lot of the people in that time where they think about these problems, they were writing in that time and we can talk about idle talk and these things to read sufferers deal with, these things going on in the background. I have a complicated relationship. I'm not sure how to answer that question in a short period of time. I think the theory… I find that theory of political speech interesting, in so far as she talks about the suffering of speech. The fact that political speech is always exposed to the world in a way that we don't control. There is this lack of sovereignty of speech in the political sphere that I find interesting. Yet I also think I'm not sure how helpful she is in freethinking political speech from the perspective of critical disability. She has her own issues about how it is carved up.
SHELLEY L TREMAIN:
Melinda Hall would like to know, and first of all she apologises if she missed something, but she is asking if there is any connection the MTR floating signifier? -- Empty.
JOSHUA ST PIERRE:
I don't have a comment on that.
SHELLEY L TREMAIN:
If you want to pass, we can ask another question. The
JOSHUA ST PIERRE:
I want to get back to that question. It is interesting, but I don't have anything on that.
SHELLEY L TREMAIN:
Julie would like to know… She would like me to indicate that she thought it was a terrific presentation and she would like to thank you for it. Julie really likes the idea of the materiality of speech and was hoping you could say more about the.
JOSHUA ST PIERRE:
Part of this project is this thesis I have that (inaudible) has rendered communication as technical rather than a political process. Part of the deal is that instead of communication being a shared navigation of difference, communication becomes a technocratic process of sending messages between senders and receivers. There are all kinds of reductions and distractions that happen in that process, but when we start to think about communication as the process of trying to get a message from a sender to a receiver in a purified form, I think the materiality of the medium itself becomes an obstacle to successful transformation. I think part of the way communication has been changed is that it has been interpreted through the logic of cybernetics is that the materiality of communication has to be rendered inert to protect the original intention of the receiver. Communication becomes a sterile process here and we can only detract from the purity of the process of communication. Part of what this project wants to do is to forget about the deeply relational practice that communication is.
SHELLEY L TREMAIN:
Thank you. I'm going to extend this session by five minutes and go to the top of the hour because we have a number of questions and I indicated to all of the presenters a couple of weeks ago that I wasn't going to cut you off and that our main concern was starting sessions on time and if we go over five to the hour, that is fine. Our next question is from Maria Fowler. She writes, as a fellow stutterer, I often find myself shut out of meaningful conversation, having my thoughts and opinions assumed for me and others get frustrated. How do we make ourselves present in these conversations?"
JOSHUA ST PIERRE:
It is a good question. It is a question I have been working through for a long time as well. It is hard, right? Largely what we are up against is a lot of forms of structural ableism and the norms and codes embedded into our social fabric, that play out the choreography of who gets to speak and who doesn't. Partly for myself, the process has been a reclaiming of space that I recognise I don't have a right to. There is a way of stuttering over the top of people that has been empowering for me over time as I experiment with ways to reclaim space. I also recognise that these things, they can only happen in relation to power. We stutter over the top of your boss. The question of cheap talk is the question of what kind of ecology of communication is there and what is possible within these ecologies? I think there is real political work to do as a group of stutterers to form communities that are going to give us power. I'm not… A lot has this changed and can be talked down. These are going to change, but having support from within, by distilling people and slowly build territory. The final turn is the teacher's how to build existential territory. -- Teach us how. We can communicate in different ways. I don't have an easy answer because it is a hard question. Those are some things I have thought about.
SHELLEY L TREMAIN:
The next question is from Richard. He says "Joshua, as a researcher who also starters, I enjoyed and felt encouraged by hearing and seeing you at this conference, especially your well-known cynical comments on practising the talk, let's see how far I get." He really likes your idea of the way we speak that is construed as efficiency in terms of fluency versus the information we give that is construed as efficiency in terms of the value of content. Building on this, Richard would like to know how you describe the normative mention of this. What is the ability to express and talk for the sake of the argument? Not only in terms of stuttering, but also education and the ability to express yourself.
JOSHUA ST PIERRE:
I missed some of it. I wanted to make sure I understood it.
SHELLEY L TREMAIN:
I think it got taken away from me. It might be in the answered section.
SPEAKER:
Is at the very bottom of the answers section, Shelley.
SHELLEY L TREMAIN:
The idea of the scrutiny between the ways we speak, versus the information we give. How would you describe the normative dimension of this? How does the ability to express and talk affect the sake of the argument? For the sake of the argument. I think it might be a mistake. Not only in terms of stuttering, but the link to education and the abilities to express yourself. Get that Joshua?
JOSHUA ST PIERRE:
That's a good question. Can I answer it by cheating and answering a slightly different question.
SHELLEY L TREMAIN:
Sure, whatever you would like.
JOSHUA ST PIERRE:
It concerns the question of access and who gets to access the temporal present, right? Who gets to actually join and be part of something that is happening and join the conversation. The problem that I have been working up against in this project is that it seems like to use social media as an example. The problem of talking heads has increased as communication, as communication technologies so the barrier to access. As it is easier for people to come online and now everyone is online and having an opinion and sharing their opinion. Of course, there are suddenly both deeply democratic elements of that and it also has something deeply important from the perspective of disability justice. Providing access to these kinds of technologies and forms of communication is then extremely important. Yet, at the same time, it is also anything that I think is increasing the cheap talk. The problem there of how we consider access and who is actually being included. For me at least, Melanie, it is the distinction between transformative and consumptive. Access has been a really important key here. So the ideas are we invited, sorry, does the form of accessibility invite us to be consists of consumers? Consumers are just users, or does the access actually give us a means to transform the underlying conditions. Part of this I think is, I am scared about opening up cans of worms as we are trying to close his panel. I think maybe I will stop there, because I can see myself just going on for a while.
SHELLEY L TREMAIN:
We will take a break until 630, 11:30 PM and 930 your time -- 6:30 PM, 11:30 PM and 9:30 PM Joshua. Have a nice break everyone.
JONATHAN WOLFF:
Thank you so much everybody, can I suggest that the next panellist, Joseph and Laura to join us in the gallery. We will close off our microphones and videos for a little bit. We will reconvene up here may be at 20 minutes past the hour. We will take it from there. We were close everything off about 15 minutes and we will come back at 20 past the hour for the next panel. Thanks so much.
JOSEPH STRAMONDO:
Nice to see you. You are going to be talking in the last session. It is good to see you.
SPEAKER:
A great conference. Amazing. Very hard to organise all of this. In this way.
JOSEPH STRAMONDO:
We have got a great team. Jamie is handling all of the IT and Katie is helping with the questions. We have had practice doing this before. We have the formula. Do we have Joseph with us? I have been interacting with him on twitter. I know he is awake. He is on the West Coast.
SPEAKER:
It is not yet nine there.
JONATHAN WOLFF:
Will you have slides?
SPEAKER:
I have three. I went back and forth and I felt… Shelley said it wasn't a good idea to use slides, but a lot of people did. I don't know if I need them, but I thought it might be useful. It would take me off the screen a bit more.
JONATHAN WOLFF:
We will have you and the slides on the screen. Just so we don't complicate things, we will test them after Joseph has done his talk.
SPEAKER:
I will turn off my video and audio. Laura, welcome to the panel. How are you?
Laura M Cupples
Hello.
SPEAKER:
Very nice to meet you. You have been watching the conference. You have seen how it works. Is there anything we need to go through?
LAURA M CUPPLES:
I haven't seen any of the conference. I was teaching yesterday.
JONATHAN WOLFF:
No problem. Your job is to introduce Joseph. Everyone has been good at keeping to time. You will then deal with the questions. What happens is we ask the audience to look at the Q&A and then Katie who is going through that will go through it and pick out the questions and feed them directly to you in the chat. You don't need to look at that. They will come to you as private messages and will be marked in red as a public message and then you can read it in the chat. If anything looks wrong, look at that and the questions are there. It should be fine. That's about it.
LAURA M CUPPLES:
OK. How long is the talk versus the Q&A?
JONATHAN WOLFF:
The whole session is 50 minutes. We tend to divide it equally. Some have gone 30-20. That is what people tend to do. Good time for questions. We have had quite a few questions.
LAURA M CUPPLES:
OK. If the chair has been introducing themselves, or just presenters? I know I got an email that suggested we interviews ourselves. -- Introduce.
JONATHAN WOLFF:
Just one line. It would be interesting for the audience. That would be the norm. We are under tight time. Joseph, you have appeared. At least your name has. Are you there?
JOSEPH STRAMONDO:
I am here. I am trying to get my video settings set up here. I have a number of quirky virtual programs I was using for teaching that I don't want to use the conference.
JONATHAN WOLFF:
I have one that I won't show. I did it a couple of weeks ago. It normally takes place in someone's house and I had a background of an apartment in Paris and I was sitting in her apartment.
JOSEPH STRAMONDO:
That is extraordinary.
JONATHAN WOLFF:
Good fun. Nice to see you. Let me run through some things. Do you have slides?
JOSEPH STRAMONDO:
I do.
SHELLEY L TREMAIN:
Hello Jo, hello Laura. I'm in the dark because I don't want to be on camera, but I wanted to say hello and good luck. I will go off camera and finish my lunch.
LAURA M CUPPLES:
OK.
JOSEPH STRAMONDO:
I just had breakfast.
JONATHAN WOLFF:
I'm having afternoon tea. Jamie, are you there?
SPEAKER:
I'm here.
JONATHAN WOLFF:
Joseph, would you like to try the slides? Jamie can give you instructions.
SPEAKER:
Could you test your slideshow?
JOSEPH STRAMONDO:
Let me try.
SPEAKER:
Just go for presentation and full screen.
JOSEPH STRAMONDO:
Are you seeing…
SPEAKER:
Try advancing your slides. Excellent. Perfect. You can leave them up or take them down, whichever works.
JOSEPH STRAMONDO:
I will leave them up.
LAURA M CUPPLES:
Do you want me to draw attention to closed captioning and remind people that questions go in the Q&A at the beginning?
JONATHAN WOLFF:
I was just about to ask you to do that. Those are the bits of information. The introduction and then we are in business. Laura, what will happen is we will wait for the clock to tick over 230 and Jamie will send you a direct message in the chat. If you have that open, when we are ready to go, because we are recording and everything goes out live on YouTube, but we only record the actual speech, the talk and the Q&A, rather than this part. We want to get the timing right. I'm going to go off of video and I will mute as well. Leave it with you for when you get the prompt from Jamie and then you can go.
JOSEPH STRAMONDO:
Thank you, John.
JONATHAN WOLFF:
Thank you so much.
JOSEPH STRAMONDO:
It is good to see you.
LAURA M CUPPLES:
Good to see you. How are you?
JOSEPH STRAMONDO:
I've been pretty good. I think this is the first time we have interacted in this way. We have exchanged emails and messages.
LAURA M CUPPLES:
This is the first time I've seen you face-to-face, as it were.
JOSEPH STRAMONDO:
Pretty cool. Hopefully we can see each other in real life at some point.
LAURA M CUPPLES:
Where you nickel?
JOSEPH STRAMONDO:
I don't know if we met up.
LAURA M CUPPLES:
Maybe I saw you across the room and wasn't sure it was you.
JOSEPH STRAMONDO:
OK. That is probably the only place I can blend in. Is that the wheelchair user I am looking for, at a disability rights conference? I will figure out how to open up my chat box. There we go. Trying to adjust the camera angle so that people see my power chair and not my messy desk.
LAURA M CUPPLES:
Hi everyone, welcome to philosophy disability and social change session 4. My research falls at the intersection of science and values, health and policy and the epistemology of disability. I am pleased to be chairing today's session. I was beagle today is Joseph Stramondo and he will be presenting his paper vulnerability to COVID- 19 and the moral pernicious nurse of congregate care. This session is closed captioned, if you click on the icon at the bottom of the screen. Questions for a speaker can be posted to the Q&A below. They will be addressed at the end of the session. Joseph Stramondo is an assistant professor of philosophy and associate director of the Institute for ethics and public affairs. As San Diego State University. His interests focus primarily on intersectional as he of disability, or rather philosophy of disability in bioethics. He has written more than 20 scholarly articles and book chapters on informed consent procedures, to reproductive ethics, to assistive neurotechnology. His current research is devoted to developing two manuscripts, the first is under contract with Rutledge and will address the fields in which the field of bioethics fails to address the social categories of gender, race, disability and sexuality. The second will offer a systematic limited fence of the reproductive technology to choose to have a disabled child. I will pass the floor to you.
JOESPH STRAMONDO:
Thank you for the introduction, Laura. I just want to start by saying thank you to Laura, but also to our conference organisers, Jonathan Wolff and Shelley Tremain for putting together an absolutely incredible three days. I am very honoured to have been asked to be part of this. Hopefully, I will not let you all down. OK, so my talk in some ways, I hope is complementary to what we heard from Shelley Tremain yesterday. It is sort of a slightly different take on an analysis of institutional long-term care and COVID- 19. It is sort of how the various risks of contracting COVID- 19 have been amplified by institutional long-term care in the systemic ableism that is embedded in those structures. So, let me advance my slides here. My main claim is going to be that mainstream bioethics hasn't done a very good job with understanding what social obligations we have two recipients of institutional long-term care. During the COVID- 19 pandemic, because it hasn't done an adequate job of analysing what our responsibilities are to these folks in general. So, to understand the duties that we have two folks within the system of institutional long-term care, I argue that we must re-conceptualise the meaning of both vulnerability and institutionalisation. So this is ultimately a kind of concept analysis. So, I argue that both of these concepts would be better equipped to think through what we owe folks in institutional long-term care if we reframe them as a matter of power. So in the case of vulnerability, we want to define it in terms of power as well as physiology and in terms of institutionalisation as a concept, we want to define that in terms of power, rather than location or segregation, or some of these other definitions of what it means to be institutionalised. Hopefully, this will become more clear as things unfold. So, what we have seen so far during the pandemic is attempts to protect people from COVID- 19 in institutional settings with interventions like more staffing, better staff training and infection control practices. Better enforcement of infection control protocols. PPE, personal protection equipment. And rapid testing. So, that has been sort of what has been going on since March. As Dr Tremain really laid out nicely yesterday for us all, it hasn't worked. The numbers, the data show is that there is still a lot of COVID- 19 running rampant in the institutional long-term care system. A lot of people are getting sick and a lot of people are dying. This is not working are sort of as a practical intervention and it certainly is not working as a moral intervention. We are not doing what we ought to buy helping folks in the institutional long-term care system when it comes to COVID. So, I think that the reason why bioethics hasn't really done a very good job of taking this up and dealing with it, in addition to some of the metaphysical claims that Shelley was defending yesterday. I think that we need to look at the concept of vulnerability and of institutionalisation. OK? So, standard duties protect folks in institutional care to narrowly define vulnerability. In other words, vulnerability has been framed as a physiological, biological phenomenon and in reality, it is at least also a power and political issue. OK? So, yes, perhaps that the virus does affect different people with different bodies differently. But focusing only on this explanation of what makes somebody vulnerable to poor health outcomes excuses the ways in which power also plays a role. Here I am sort of rehashing a little bit of what Shelley talked about yesterday and I am going to quote and offer the blog at length here. To drive this point home and then we will talk about the definitions of institutionalisation. So, deaths, this is Shelley, "deaths have been cast as tragic consequences of the unique circumstances that surround the virus itself, attributed to its specific features as theology, the speed and efficiency with which it circulates, and the lack of epistemic authority about it rather than attributed to and regarded as a consequence of the very nature and functioning of the nursing homes in which the deaths have occurred. Seniors and elders in nursing homes and elsewhere aren't inherently vulnerable, nor are disabled people in institutions inherently vulnerable. Both of these groups, among others, are rendered vulnerable. That is, they are made vulnerable." What I'm interested in is unpacking exactly how people who are living in institutional settings are made vulnerable. When we talk about vulnerability in this sense, we are talking about a power disparity. This is true for health disparities in general that track race, income, gender. There are lots of ways in which power makes people vulnerable to more health outcomes. We can apply the same thinking to disability and long-term care systems. We need an analysis of how power disparities are embedded in the long term care system have made people vulnerable specifically to COVID- 19. So that is sort of what I am going to be talking about for the remainder of our time. Excuse me. So typically, institutions are defined both in public policy, but also sort of in the public imagination in terms of three factors. Either their physical size, their numerical size, or whether or not they are segregated rather than integrated. Physical size it just means that the literal size of the building, the physical side of the dwelling, which people are housed. In an attempt to de-institutionalise, some institutions have used cottages, rather than dormitories and so you have a sort of these are smaller buildings that you move people into all on an institutional campers and say "institutionalisation is over now." It is people dwelling on a simple campus, here we see group homes with smaller numbers of people living together as an alternative supposedly to an institution. Finally, the other access that we can try to understand institutions based on traditional anyway is his idea of segregation and in other words, whether or not disabled and non-disabled people live together in institution, an integrated neighbourhood, or apartment building, or if folks are segregated into groups. According to the presence of disability. Or not? That is how institutions are typically defined and I am arguing that this concept of an institution is inadequate for understanding the moral character of an institution and what we all, people who are living in institutions. Instead, I argue that institutions ought to be understood in terms of power disparities, OK? So according to this view, an institution is anyplace a disabled person lives which they do not have control over the care or support they receive. It is purely defined in terms of power, rather than location, or number, or segregation. So what follows from this definition is that there can in fact be what is sometimes referred to as an institution of one. This is a situation in which someone lives in a single person dwelling in a integrated neighbourhood, or apartment, but lacks any kind of meaningful control of their care. So what I mean when I say meaningful control of their care is a lack of power to determine things like what care they receive, where care is received, when care is received and I think most crucially, who provide that care? So to practice a little bit more. What care is received? Includes decisions about whether or not you need help with certain things. In particular, may be certain you know certain behaviours that we sometimes hear about in institutional settings, where people are trying to discourage certain behaviours in a disabled person. That is sometimes framed as this kind of care. Where care is received. In other words, where do you live? Do you have control over that? When it is received, this is a big one. Do you have control over when you bathe? When you take your meals? Finally, who provide that care? Who, I want to talk about a little bit more in-depth, because I think it is actually the most important of these factors. That is for two reasons, one reason is that, many of the activities that people get help with when they are using a long-term care system requires a certain level of intimacy and so things like bar streaming, bathing and so on -- things that using the bathroom, bathing and so on. It is a morally problematic thing. One ought to be able to have control over who is taking such a role in one's life. The second reason why who is incredibly crucial when talking about the control that someone has over their care is because power over what, where and when in many times flows from power over who. What I mean by this is that if the disabled person receiving care has the power to hire, or fire a caregiver, then they have implicit control over these other features of care as well. Nobody is going to tell you when you have to go to bed, or when you have to take your meal if you have the power to fire them from helping you. The who question is the linchpin here. One of my good friends helped me think through a lot of these issues. He does incredible work with his blog and you can read more there. He pointed me towards the question of the burrito test. The burrito test asks if someone can wake up in the middle of the night and microwave their own burrito because they feel hungry. If someone lives in a setting they cannot do that, it is likely that we should consider that setting as an institution. It shows they don't have meaning for control of care. We can also think through community-based care via these power relationships. Community directed care, sometimes referred to as consumer directed care, is care in which a disabled person has the power to determine the what, where, when and who questions. What is interesting about this, and what I'm arguing for, is this understanding of what constitutes an institution versus a setting in the community, as far as long-term care systems, is quite separate from questions of segregation, numerical size and the size of the building. We can imagine a situation in which community-based care can exist in a large building that is mostly segregated and includes numerous disabled people all are living in the same place and still be community-based care. So long as the appropriate power relationships exist according to this definition. An example of this criteria is a college dormitory. Multiple disabled students have self segregated and chosen where to live and who to live with, and they share personal care attendants as they direct their own care. This isn't purely hypothetical of what I would call community-based care, even though it is happening in a large building with a largely segregated group of disabled people that are multiple. The reason why I know this isn't purely hypothetical is this is how I experienced graduate school. I lived in an accessible dormitory where lots of users got together and set up a community of disabled folks with a wonderful situation of interdependence where we were helping each other and sharing resources in terms of personal attendance. This was certainly not an institution. This is because of the power relations that exist. There are several challenges that might be levelled towards definitions of institutionalisation and community-based care. The first challenge might be what we call the challenge of capacity. The challenge of capacity says something about disabled people not having the capacity to exert power of the who, what, when and where of their care. This is what constitutes an institution of a community-based system that is placed on an institutional setting by definition. Looking at these responses goes a long way to relieving this worry. When people look at this, people underestimate the capacity a lot of people have for agency. I think Agency is much broader even for people with the most serious disabilities and is then often assumed. This is something I learned not as a scholar but an activist. This is when I was working for the protection and advocacy system within United States and going into the state institution in Texas and monitoring them for neglect and abuse. A lot can be learned about the preferences that people have about where they live, the care they get, when they receive care and especially the who question. Even those who are non-verbal. The approach to deinstitutionalisation of care should not be about deciding a proxy for someone about the nature of care, but rather ensuring the agency that someone has and that they can express is recognised and respected. This goes a long way to dissolving this capacity and this is how somebody wants to be cared for by another particular individual, whether or not we like the person or the care of someone else. The who question is the linchpin. If there is the challenge of capacity, the idea of supported decision-making amid a situation where someone usually with an intellectual or developmental disability is supported in understanding the complexity of a decision there needs to be made as well as the hope on understanding of nuanced factors that goes into the decision, but ultimately they are the ones that make the decision and the folks supporting them defer to those decisions ultimately. This is something we all do. This is peculiar for people with intellectual developmental disability. Recently my van broke down. I brought it to the specialty shop that deals with wheelchair accessible vans and they wanted a huge sum of money to fix it. Unfortunately, we had a close friend who worked for the same specialty shop and I showed him the estimate they wanted to charge me and he said no. This is not a good choice. They are helping me figure out a way of getting the van fixed. At a much cheaper cost. This is an example of supported decision-making. We all have folks who we rely on to make certain kinds of decisions when we don't have expertise. I know nothing about the mechanics of a minivan, ramp and and controls. This can be ensuring that a disabled person can maximise the capacity and control their own lives. The argument is they need to refrain from how we think about capacity, more along the lines of relational autonomy in order to understand how it is that everyone can access what we would think of as community-based long-term care in terms of the definition advancing today. The other serious challenge is what we call the challenge of shifting oppression. This points out the definition of institutionalisation and community-based care as too ideal. When doing nonideal theory, we might say in a nonideal world, the institutionalising care and not ending or challenging oppression, but shifting it. If someone is pulled out of an institution or nursing home or group home, and move to a more community-based setting. The burden of care as it is framed, will shift onto the women in their lives. This is a problem. This happens. This is a cost saving measure. They are not given enough support to live in a community-based non-institutional setting because it is presumed the mothers and the system four sister and the nieces will take up the slack and fill in the gaps. The problem with using this as an argument against ending institutionalisation is that it is not as intersectional as we need to be. If you look at the data, that shows who it is that is receiving long-term care in institutions, you see it is largely women, especially women of colour. The fact of the matter is women and women of colour especially are more likely to provide the care and receive it. If we let the status quo of institutional care continue, it is also a form of intersectional oppression that disproportionately harms people of disability. It is women of colour who feel they are affected by these institutions. I would argue in response to this challenge of how we end is that usually is a and is we ought to emphasise the politics of solidarity. Exacerbating one oppression should not be seen as justifying retaliation of oppression. We need more solidarity with those receiving care and those providing care rather than pinning them against each other within how we argue about these things. If you are convinced by my definition of institutionalisation and community-based care, hopefully we can turn back quickly before I wrap things up to the issue of COVID-19. That is where we started. My argument was that to understand our moral obligation to people living in institutions during the pandemic, we have to understand the concept of vulnerability and institutionalisation. How does my argument apply? How does this apply to the issue of the pandemic? One thing we know is one of the most effective measures for preventing infection is what we refer to as social distancing. Social distancing doesn't mean that a person must isolate themselves physically from everyone. What it means is you are more careful in choosing who you are going to be in full proximity with. You make choices of if you go to the grocery store, or if you get them delivered, or do you meet up with a friend in the park with masks, or do you stay home? It doesn't mean you are never in proximity with anyone. A lot of us have roommates or live with family, but as you socially distance, you are really careful in weighing up the risks of being in physical proximity with others. We can now see how this applies to analysis of institutional versus community-based long-term care. Institutional care by definition takes away a control of who they are in physical proximity with. The practice of social distancing becomes possible, not because a person needs care, of an into a kind, but because the power disparity involved institutional care and keeps them from determining who provides the care. You don't have control if you are getting care from someone you know is going to be careful about the spread of the disease or if that person is providing care for lots of other people, and so on. There is the practice of deciding who you are physical proximity with and thus having the ability to socially distance goes out the window when it comes to institutional care by my definition of what institutional care is. finally we arrive at the conclusion I have been building towards and that is that people receiving institutional care are made vulnerable to the virus, because of the power structures that are embedded into the nature of institutional care. The more analysis of institutional care that I've worked through today, it is revealed something important about what our moral obligations are during the pandemic to people that need long-term care. Because the same institutional care, the same features of the institutional care they make it so objectionable generally are the same features that are posing serious health risks to people during the pandemic. So, it turns out that our duty to disabled people during the pandemic is really our duty to them any time. That is to provide them with community-based support services. By the definition that I was trying to advance and that is my talk, thank you for your attention.
LAURA M CUPPLES:
Alright, thank you Joe. If you all will post your questions for Joseph Stramondo in the Q&A. Katie will relate those to me and I will pass them on to our speaker. So our first question is from Laurel Williams and she is asking, "can you talk a little bit about how institutions, using your definition have also constructed heightened social isolation for instance, no family visitation as a part of COVID protection protocols, but that this heightens their vulnerability to the power of the institutions and the sense that the institution has walled off all access to witnesses and that this rendering of people vulnerable to COVID has also heightened their vulnerability to abuse and neglect."
JOESPH STRAMONDO:
I think what is being referred to here is this idea that people that have others that are involved in their life, even if they are in an institutional setting, that sort of coming in from the outside tend to get cares for much better. Then if they do not have other family members and so on that are involved. In other words, when the folks that are institutionalised are being engaged with by the outside world, the institution pays attention and does a better job in terms of neglecting abuse. The kinds of protocols that have been a sort of the response to COVID- 19 that I sort of started off with, right? The limited perception of what constitutes institutionalisation. Have made it so that people can't have others in their life, family members and so on come and visit and engage with them and watch to make sure that they are not being neglected, or abused. If we understand institutionalisation as a power structure as a something in which someone can control their care, or not. Then we see ways in which that control has been exerted during the pandemic to isolate them further. If you don't have control over the way that power is exerted, you do not have control over the infection control protocols. That will isolate you. From family and friends and so I think that is sort of what the question is getting at here. I do not have the data in front of me to know what the effect has been as far as increases in neglect and abuse, but I do know that conceptually, this is certainly going to amplify the risk of this kind of neglect and abuse. I also know, that the nursing home lobby and other kinds of institutional providers have been very active politically in trying to protect themselves from the repercussions of this kind of neglect and abuse, right? And that there have been efforts in Congress to try to pass laws that protect institutions from lawsuits, where they, because of COVID- 19 and so on, they are neglecting or abusing a patient so to speak. I think that that in and of itself shows that there is sort of this increase risk for neglect and abuse.
LAURA M CUPPLES:
The next question is from Luke Beasley who thanks you for an excellent talk. He was wondering if you would be able to talk about how we control support services at scale, if we do not want to de-institutionalised at the level of town city, county, our options have been historically to use individual PA are hiring, where there are lots of market pressures, which makes it difficult for people to rely on funds from the state to maintain during financial crises, or to try and gain a collective control over public support services in which case there may be less direct individual control but greater control by disabled people as a group. Which of these would you argue is preferable, or do you see 1/3 way?"
JOESPH STRAMONDO:
We are getting into the weeds a little bit with this question with the long-term care policies. I am primarily a philosopher and so I am not sure that I am the best qualified to answer this question, but I do think that the question that needs to be asked when we are thinking about the specifics of the policy is at the end of the day, does the individual disabled person have control over their life? In the way that their care is being administered? So, do they have control over when they go to bed? When they bathe? What they had for dinner? Right? Does their structure care past the burrito care, or not? -- The burrito test? It is as simple as making the determination, what policy is going to advance a system that allows a care structure to pass the burrito test.
LAURA M CUPPLES:
Thank you Joe. So our next question is from Cynthia Stark and Cynthia Rs, "I think Shelley's claim that she quoted that vulnerability through the bad effects of COVID- 19 is exclusively socially determined is too b. Some of us are at greater risk than others, having similar symptoms or becoming a lot more poorly. It is completely compatible with everything you have said about the relationship between institutional power and vulnerability. Including its extent invisibility into sexuality etc. So why rely on the b claim when we do not need it?"
JOESPH STRAMONDO:
If you notice, I did quote Shelley and her claim as an introduction to the idea that vulnerability is politically constructed. In my slides, I tried to soften that claim little bits. By pointing out just which she said, right? These two ideas are compatible. What we need is a definition of vulnerability that includes politics in addition to physiology, rather than only focusing on physiology. I am actually, not making the same claim that Shelley is here, that all vulnerability is socially constructed. I'm not doing that, not necessarily because I disagree with it. Because, I think it is a harder claim to defend. Then, sort of allowing for the idea that some vulnerability is in fact biological and physiological. So I think this week claim is sufficient for defending my view of what institutional care is and what vulnerability is as far as it being political. So, I am not sort of trying to defend that ber version, I will leave that up to Shelley, who I think is more than capable of defending her view.
LAURA M CUPPLES:
OK, and it's question is from Cecilea Mun who also thanks you for your presentation. She says, "Joseph, I generally agree with your position on the ethics of care for disabled people. The difference between institutional care and on institutional care. I have two questions however. First, you know that having agency over one's care is a crucial feature of ethical and non-institutional care and although I agree, I am still wondering if this is not a radicalisation of ethical non-institutional care, especially given concerns about legal liability. It seems that concerns over legal liability drive a lot of the decisions through non-agency and institutional care. I wonder how you attest to these considerations?" You want me to give you the second of the question? Wait until you've finished answering the first.
JOESPH STRAMONDO:
go ahead and give you the second half of the question.
LAURA M CUPPLES:
If you draw a distinction between institutional and non-institutional care and characterising it as always being unethical when compared to non-institutional care. One can criticise and demand change without necessarily stigmatising institutional care. As it seems you might be doing.
JOESPH STRAMONDO:
Yeah, OK. I think with regard to the first question, I do think that, you know this is going to be a policy issue of trying to sort out my ability concerns. In that when you give someone more control and more agency over their care, the argument will be that, you know, you have two give them what is sometimes called the dignity of risk. Allowing disabled people to take risks that the rest of us would also take. If you do not have in particular some kind of intellectual or developmental stability in particular. I think that this does pose an issue when it comes to liability, because if you give someone the dignity of risk, does this mean that you are then absolved of responsibility if things go wrong, right? So, I think that this is where something along the lines of supported decision-making can come into play where you know, giving someone control over their care doesn't mean just throwing them to the walls, but rather supporting them in making the best decisions that they can make. For their own care. In very complex situations. In other words, making sure that there are people that they trust that are helping them understand all of the nuances of various decisions that might be involved in their care. At the end of the day, ensuring that whatever decisions are made, are there decisions and that they are in a situation where they When it comes to something like liability, there is a balance that can be struck. People are able to control their care without saying the caregivers are absolved from any kind of repercussions if things go wrong. In terms of the question of stigmatising institutional care, the is a tough one. I'm inclined to say I'm institutionalising care. I'm inclined to say that stigma is a bad thing in most cases, but when it comes to some kinds of morally pernicious systems that stigmatisation might be very appropriate thing to do. I might be for ending institutionalisation as I'm describing it. It is a form of control over people's lives. Some things should be regarded as a morally problematic. I can bite the bullet, I think.
LAURA M CUPPLES:
We have only got a couple of minutes left. I want to read one last question because it is short. This is from Melinda and she asks if your argument applies to incarceration and if so how.
JOSEPH STRAMONDO:
Does it apply if it should be understood as a form of institutionalisation? I think it does apply to incarceration in terms of it entails the kinds of lack of control I'm talking about when I'm thinking about what defines institution. The difference is arguments about whether or not incarceration gives different justification for their control. Whether or not it is justified in terms of punishment and incarceration, but not justified in terms of disability, I think it is an open question. I'm not willing to say that incarceration is a good thing and it is completely different and it is always justified. Congregate care of disabled people is never justified or something. I will say that it adds a wrinkle of complexity to the issue that I think is beyond the scope of what I'm arguing here. It deserves more exploration are both forms of institutionalisation there yes. Can one be justified? Maybe not.
LAURA M CUPPLES:
I think we will wrap up because we are out of time. Thank you for a great talk and to everyone for a fantastic question.
JONATHAN WOLFF:
Thank you for sharing and for a fantastic talk which I was partially live tweeting as you did it as I was so impressed. One of your slides is all over Twitter. I hope that is OK.
JOSEPH STRAMONDO:
Thank you so much. Thank you for the opportunity.
JONATHAN WOLFF:
Thank you both and thank you for the excellent questions. We are going to take a short break and will come back at half past the hour with Laurie. I last thank you to Joseph and Laura. Thank you on behalf of the audience. I will invite Lisa and Lori to come on so we can talk about the next session. Hello. I don't know if you have seen any of the other sessions?
LISSA SKITOLSKY:
Each presenter seems to have 30 minutes.
JONATHAN WOLFF:
That is the idea.
SHELLEY L TREMAIN:
I wanted to say hello. One thing I said was we are going to get cut off. As long as we start the next session on time and since this is the last session of the day, I don't think it is going to be a problem if we go over a a few minutes.
LISSA SKITOLSKY:
I never somebody who would like to interact or do the time thing, but that is why I want to ask. I that person ever. I'm always going to privilege the talk over Q and A. If that is a problem, that is why I was asking.
JONATHAN WOLFF:
We haven't had a problem.
LORI:
Don't worry. I'm not going over. Don't worry.
SHELLEY L TREMAIN:
I will go off now. Good luck and I will see you later if you join the debrief that we will be out. Thank you so much.
JONATHAN WOLFF:
Thank you, Shelley. Just to talk about the technicals, we have the introductions and then sorting out the Q&A as they come in. What will happen is Katie will ask the audience to put questions to the Q&A and Katie will go through it and count the questions that are best to put to Laurie. You will receive direct messages from Katie in the chat with the questions. Katie might send one to show you how the system works.
LISSA SKITOLSKY:
That would be great. We can do the person's name and then the question.
JONATHAN WOLFF:
If anything goes wrong, the Q&A can be a bit chaotic. Stay with the chat if you can. We don't have a session after this. We don't have to be on the minute for timekeeping. I will leave that to your rough judgement. If you could remind the audience that the closed captions are available at the bottom. I think they will know that by now. We will get instructions on the chat about how to use the captions if they have not done it before. I
LISSA SKITOLSKY:
I will remind them about the conference continuing tomorrow.
JONATHAN WOLFF:
Thank you.
LISSA:
I am on it. I've got it.
JONATHAN WOLFF:
I am behind you.Let's just check that your slides are running. Jamie, is that the right way?
SPEAKER:
Please stop your share and show me the presentation.
JONATHAN WOLFF:
Please move them on.
SPEAKER:
That is fine.
JONATHAN WOLFF:
Is that on the first slide.
LORI GRUEN:
That was it.
JONATHAN WOLFF:
We are on 26 minutes past. We record this session. We are going to wait and see the exact timing of 30 minutes past the hour. I'm going off of microphone now.
LISSA SKITOLSKY:
Can I get out of that sharing screen?
JONATHAN WOLFF:
The other way of doing it is going to the top right-hand corner where there is a double arrow. Click on that and see what happens.
LORI GRUEN:
What was that?
JONATHAN WOLFF:
Just to minimise the screen.
LISSA SKITOLSKY:
Now is good. I know it is a silly question. I've never fully adapted to this stuff. I'm still confused.
JONATHAN WOLFF:
It is very difficult. It can be difficult with one screen. I have a second screen and I can see everything. With one screen it can be quite tricky. Exit full screen and you should be able to see everything.
LORI GRUEN:
Tell me how to share the PowerPoint in the full desktop.
SPEAKER:
When you go to the share screen option, you can select a specific program or browser window. Is your PowerPoint open?
LORI GRUEN:
If I do Microsoft PowerPoint share, that's good. Got it. Thank you. I am in the same boat. I don't want to do the whole thing. I didn't realise I was doing that.
LISSA SKITOLSKY:
I feel like I never fully adapted to the internet revolution. It is all I think, this extension of the senses. What is happening? We will figure it out. I have a backup in case I cannot see the desktop. I might need some time, but we're fine. I'm really excited, by the way, to hear your talk. It is nice to virtually see you.
LORI GRUEN:
It is nice to see you too.
LISSA SKITOLSKY:
Does that mean I go ahead and start? Q so much for coming to the last session of the day. At this wonderful conference. On philosophy, disability and social change. Today we are going to be hearing from Lori Gruen at Wesleyan University in --. She is examining the damaging impact of cultural logics on human and nonhuman animals are co-authored monograph titled "animal crisis." Lori Gruen is the author of 11 books including ethics in animals and introduction. That will be coming out in a second edition next year. She also lives with three dogs, Tas zingy and Eli. I don't know if you can hear my Boston terrier runs in the background. I want to remind everyone that the conference continues tomorrow and also during the Q and a people can type their questions into the chat button at the bottom and I also want to remind everybody that if they would like their closed caption option, there is also a button at the bottom of the screen for that. I would like to welcome Lori Gruen to present her paper on captivity, Logix and disposability.
LORI GRUEN:
I am a white person wearing purple glasses and a black shirt and I have long grey and black hair and I am in a pretty bland -looking room with a bird poster in the background. I am really happy to be at this conference and I really want to applaud Shelley and Jo for putting it on. I also want to say that I completely agree with Christine who said yesterday that we need to look outside philosophy to do philosophy well. Henry Citrix also urges to do the same thing, saying that we should not trust philosophers on topics of practical importance. Unless they have engaged with non-philosophers and I really could not agree more. It is also really great to follow on Joe's talk and Melinda Hall's question at the end as I want to further the conceptual analysis that he began and look more into this question of power and control. My talk today will understand power as Castle capture. The institutions that I am going to talk about definitely do not pass the burrito test. I will not be able to cover everything I have to say on captivity, casa rural logics and disposability, each of which I have covered a lot on. I do hope to convey the sense of the direction of the work I am doing and add some added thoughts and I am looking forward to the rich discussion in the Q&A. But while I have been thinking about the particular hubs of captivity and finding that most of the resources of traditional theorising, at least in ethical and political philosophy do not quite capture all of what is wrong. I am troubled by the captivity of both humans and nonhuman animals. And in this talk I will be mentioning cases of animal captivity and human captivity. I am suddenly realising, is the screen on a lease, or is it on me? I am just wondering?
LISSA SKITOLSKY:
I believe it's on you.
LORI GRUEN:
You see me.
JONATHAN WOLFF:
Lisa, you might turn your video off and then they cannot see you and mute the microphone. I do not tell you that before, it is fine.
LORI GRUEN:
I am basically troubled by captivity of both humans and nonhuman animals. In this talk, I will be mentioning cases of animal captivity as well as human captivity. I want to note at the outset that I am not making an analogy between the violence towards and disregard for human captives and the violence towards and disregard for animals. There are vast differences, being a black prisoner is not the same as being a black professor, being a black professor is not the same as being a white professor. Being a disabled white woman is not the same as being a black man. None of these are the same as being a chimpanzee, or being a chimpanzee is not the same as being a two hour. Being a two hour is not the same as being a giraffe. You get the point. Too much these differences in animality, differences in ability, differences in gender and gender expression get occluded when these comparisons are made, or when theories focus exclusively on similarities. I want to make this caveat that this is not, it is something I'm aware of and I am not doing. There is a long problematic history of these comparisons between animals and subordinated humans. The offensive comparisons between animals and cognitively and intellectually disabled humans to a tremendous disservice to put it mildly. To both disabled people and disabled animals. There is much to say here about the dangers of what gets called the argument for marginal cases. I am not going to talk about that today, although I am happy to have a discussion about it. We need to really challenge that arguments for marginal cases as forcefully and often as possible. The language that authorises the exclusion, institutionalisation and even extermination of humans often compares humans to other animals. There is a lot to be said about these direct comparisons. Political theories, Kim has done important work in her book "dangerous crossings." I want to draw attention to what I'm calling an underlying logic which can be usefully analysed in various distinct cases often in relation to one another. My thinking for this paper is motivated by a series of intellectual exclusions, with an otherwise really important work for social change. I am hoping that you can see that slide. In her exciting new book called "de casa rating disability." Deinstitutionalisation and prison abolition. This author recounts a conversation she had in grad school with Angela Davis. She asked Davies if she knew of anyone who was working on the connection and between disability and prison abolition. Davies encouraged the author to do that work. The de casa rating disability and bring it into conversation. These are wonderful connections between ableism and the criminal system. It brings our attention the mistake that many make about thinking that our mass incarceration crisis is linked to asylums, but she argues this deinstitutionalisation is a complex often fraught, but actual instance of a type of abolition. It is really exciting that we think of abolition often as something that is aspirational, but what Ben Mosher does in this volume which is very detailed is argue that actually they have an instance of abolition that is already happening in the deinstitutionalisation process of state run asylums. It is tremendously important work, but one of the things that it does not do is address nonhuman animals, or the human animal binary. Fortunately Taylor's work in beast of burden it means the movement for the liberation of animals into conversation with disability studies and disability activism in a way that boldly counters the tensions that are inherent in the extension is a liberal humanist views in ethics. The new etiquette collection, critical animal studies are deep into this conversation. My co-edited volume called animality is is a contribution to mad studies and feminist animal studies. Both of these important volumes and Sonny Taylor is really important monograph do not address prisons and mass incarceration in any depth. So there is this gap that my thinking, I have been trying to fill. There was a conference in 2019 in the fall, in Banff called "building abolition." Which built people working in those three areas together. I'm really optimistic, even though I am mostly a person is, I'm mostly optimistic about the ongoing conversations that bring the insight and commitments of prison abolition, disability justice and critical animal studies together. My hope is that today I will be able to make a small contribution to this crucial, but still a developing conversation. One way to reframe the seeming antagonisms between our simple, or simple occlusions of these seemingly distinct areas of enquiry is to focus on what I call the casa rural logics. To get an understanding how I think about it, it is helpful to 1st explore the various conditions of captivity, which unlike Joe's discussion, institutionalised care, have a slightly different, well, even more than slightly, have a fairly different sort of set of phenomenal logical and experience circumstances. Let me just briefly say something about how I understand captivity. Humans and nonhumans who are incarcerated that is confined by bars, chains, cages, prisons co-ops locked doors for which they do not have a key are denied very obvious freedoms. They are not free to make any choices. At all. Now none of us are free to do whatever we might want to, since we are restricted by state economic and social institutions and ideologies that limit us in a range of ways. By the binary genders we are assigned by social and psychic worlds, structured by ableism and bite setting sometimes on the possible boundaries based on class, religion and ethnicity, race and even by our species. By being limited in what we want to do and who we want to be, which we always are. Significantly differs from physical confinement. Not all physical confinement counts as captivity. Being physically confined say to the vast territory like the earth, or to a much smaller space, for example a wheelchair, does not mean that one is clearly, or obviously a captive. Humans and other animals are physically limited by what our bodies can't do. We might say, each of us is captive in our bodies, that we have at different abilities. An sums case that is also true, but it is a sense that can reflect the distinct challenges by human and nonhuman incarceration. In captivity, there is a particular type of dependency that occurs, captives are both practically and existentially dependent on their captors. To satisfy all their basic needs. Though, dependency itself has had a very important set of analysis within both disability and feminist ethics. The idea here is that a very specific kind of dependency that I want to highlight. It is not that captives are, it is not only that captives are dependent, which again we all are in different ways. In the case of the captives that I am interested in thinking about, dependency is institutionalised. Which renders the captives subjugated subjects. So another way of thinking about how I am understanding captivity is at that interdependence is not possible in these conditions of captivity. Incarcerated individuals do not have the opportunity to decide what to eat, went to sleep, where to go, who to spend time with, or not spend time with. I really like this burrito test, they do not pass it, in this situation they are not passing the burrito test. Vocational, educational, recreational opportunities are not, are extremely limited, if they exist at all. Relationships with loved ones are curtailed… In some cases prisoners are shipped to federal facilities. Far from their families, often separating parents from their children for years. Almost all choices are restricted and activities are completely controlled. Many prisoners have become so dependent on the cultural system that if they are on parole, they can survive outside, not only are they prohibited from exercising, their autonomy as captives, the very capacity can be stripped through incarceration. Incarceration in other words is disabling. I was working with an incarcerated man and I helped him get his book off of the ground. A version of this was written by an advanced philosophy class and another version was published last year in the Yale Law Journal. The slide I'm going to show you, I bly encourage you to look at the article by James Davies the third. The psyche is challenged by his prior existence if he must work with the new existence that has been imposed on his all. He came to prison with double consciousness, referring to the new world of developing a new consciousness to recognise his (inaudible). His identity is effectuated through different means. He is physically separated from the world and everything that entails. He is forced into a new cold world of brick, concrete and steel surrounded by the quiet violence of razor wire fencing and the very existence of which highlights his dangerousness and proclaims that he deserves his captivity. His identity is socially stigmatised but as a black man his conscious of the stigma of being a prisoner before ever becoming one. Once in prison, the prisoner must contend with the conceptions that they are intended to define him as other than who he is. Separated from equality and recognition, not once but twice, the black prisoner is held captive that plays an integral role in its section of itself. -- Inception. We understand the profundity of James's notion of double double consciousness, blackness, criminality, disability and analogy are categories of capture along with the violence of logic. Let me try to fill this out. The cultural spaces spent time beyond control. As James notes, the cultural spaces are not simply punitive but also seen as disciplining and sites of surveillance. In terms of the cultural systems, this is the logic. In some instances, the logic is the domination that supports and maintains disciplining control of bodies, but taxonomy. The exclusion and violence it authorises. Some of this is distinguishable. The first type of logic, the logic of domination if the underlying justification for oppressive institutions, relationships and practices of domination and subordination. Domination occurs when a being is in a position where someone has the power to arbitrarily interfere in choices they would otherwise be able to make. This is an idea that has been made before in many places. This is rather expensive. The interference needs to be passable in the form of a fret. It has wide reaching ramifications that one can internalise as part of the domination when one experiences the threat and one that has the power to dominate if the threat is taken seriously and acts as if there is a privilege. This sort of logic through a domination naturalise is and normalises the domination. Addressing this logic is important in many contexts, but there is a different concern as domination exists on the same plane as the structure of power. This is on the same table, or at least close by, and it can have advocates at the table. It can be addressed within the system, but there are some for whom domination is a condition of existence. The prisoner, even before incarcerated as James put it, and the animal. The very system is structured on domination. It can be addressed from within. The logic they are subjected to that is prisoner and animal goes beyond the domination. Here is logic that serves as a conceptual mechanism that fixes or solidifies and maintains exclusion and inclusion. It permanently marks another as other. The second sort of logic is especially obvious in the cases of prison and other places of institutional captivity. So is the human-animal dualism that maintains an anti-animality structure to limit the human. Looking at vulnerability and systems of abuse within the cultural space of prisoners as animals, the susceptibility to being incarcerated in the first place to remain invisible. This seems particularly germane when we look at the structural racism that is a part of the US prison system. And its population highlights the process of criminalising bodies that are thought to be bred from prison. This is particularly violent logic at work. The in classroom logic occurs regularly in the animal world and there are so many examples, but I wanted to share one that is particularly valid, but I'm not going to show… That is not what I wanted to do. I didn't want to show gruesome pictures. This is Marius. Marius was a two-year-old giraffe who was shot in the head by the administration of the Copenhagen zoo in February 2014. He lived in that zoo. What happened next, I won't show you what happened, but the zoo performed a public autopsy of his body and fed his body parts to the Lions who were held captive in the zoo. The autopsy and the feeding were done in the view of parents and children and they killed the lions that aid the body a month later to make room for more captives. This justification for killing Marius was that they were well represented in the captive giraffe population in Europe. The justification for killing the Lions was the zoo was planning to introduce a younger mail that was not genetically related to any female in the group. Summarising the lives the animals in the case of a diverse gene pool is a commonplace in zoo. The idea of zoo-thenasia, but the practice of killing zoo animals quietly is quite common, particularly in European zoos. This specification helped create and continues to enforce the afterlife of scientific racism, eugenic ideology and the continued exploitation of things deemed other. Zoo captives are disposable specimens are excellence and interesting ones perhaps beautiful ones and perhaps entertaining ones, but disposable all the same. The example of the feeding of the body of Marius from the public shows this acceptability of a violent total logic. Marius, like so many lifers that were incarcerated for life are disposable. That is seen as disposable. It is defined to an institution, particularly an institution, a total institution that embodies lies in how they are disposed of. The regular killing of so many animals allowing the public to being an ongoing disposal are not being discriminated against or are simply being dominated and dominated by the morally inconsiderable. We are reinforcing a value hierarchy with certain things on top and animals below. Some of the humans lower down are more disposable as well. This is what is described as fungible. Humans that fall outside of normal fall into the category of the fungible. Stolen from Africa and the transatlantic slave trade are prime examples. The 27 million people in slavery today have the disposable people with a large amount of people in the whole population of parenthood that are currently slaves. There are other examples, but let me mention one other example. Orangutans in Indonesia whose lives interfere with the production of ubiquitous palm oil are thought to be disposable and look to be in the wild within the next decade or so. The people that Christine was talking about in terms of ableism, those in nursing homes that Shelley was talking about, are often thought to be disposable. We are seeing that in the US during this pandemic. This disposability authorised by a type of cultural logic that I was talking about the route of an ongoing disavowal of the meaning of the lives of so many. This avowal is a culpable ignorance. Michelle Moody might call this effective and choosing not to know what someone can and should know, which is always complexed. It is a disabling disavowal that is hard to wrap our heads around. If we do, we cannot imagine how to go on. Social change is predicated on possibility. If there is a structure thought to be problematically racist or a bliss, and that structure maintains a commitment for the internal possibility of reform or repair, but we can only help to change that structure. Social change work makes sense. If the power of a system or structure is predicated upon the personal logic I have been discussing, that is if a structure relies on the construction of the other as disposable and fungible and that construction is central to its operation and pursued, then work towards changing that structure is going to be self-defeating. To put it another perhaps hopeless way, work towards changing systems that are built on cultural logic that will be enforced at the very power structure of what it means to change. Sorry to end on a pessimistic note.
LISSA SKITOLSKY:
Thank you so much. That was wonderful. Lori that was so wonderful, I am just waiting for questions coming from the Q&A. We do not currently have any right now, Katie is asking about the question. I was just thinking of so much. I have worked for the, before I moved to Canada, I was working for the past 10 years in a women's prison in rural Pennsylvania. Medium and maximum security prison. I think for me, and I mostly worked with lifers, but these were people who had been sentenced usually as teenagers to life without the possibility of parole. What I found really shocking is that according to the presence -- the prison's own statistic, 99% of the women had been subject to sexual assault and battery by family members, or their partners. That is the prison's own statistic. In my experience, in my work with women, I was shocked by the disproportionate amount of women, every single women who had not been subject to being molested as a child. Often by parent or family member. It is really an epidemic in the United States that nobody talks about at all. For these women, the captivity really begins when your child. That is what I kept thinking about, right? It is such as prison and it is so overwhelming and it is so difficult to talk about that it just sort of seems a missing piece to me too. Especially, I know we are not being specific, just a specific see of women's incarceration and where that captivity starts. I was just thinking about that and I have a book coming out in a week all about hip-hop and I was bit shocked that philosophers that work in philosophy and carceral logic, do not draw on hip-hop lyrics. I just wanted to repeat what you said, that so much of underground hip-hop is a testimony by black men and women who had been inside, but feel like their entire life was preparing them, or trying to put them in the prison and just the way that the lyrics are conveyed through the form, so that they can convey truth about the PRISM system outside of the dominant discourse that reinforces those logics. But you are mentioning. It is just incredibly helpful and the only word that rappers use over and over and over and over again that carceral logic is genocide. When you were saying at the very beginning of your talk, I do not have we have the right language here. I have been drawing on hip-hop here for the last few years against white Genesis, if you are not understanding the conditions of confinement. One thing that really frustrates me about academics on prison is that they tend to talk about the disproportionate amount of black men, or the number of people in prison. I love that your talk is really focusing on the conditions of confinement themselves. It is so critical and if you take into consideration, you have to talk about a form of genocidal violence. State driven, state sanctioned violence against entire communities as such. That undermined the social vitality of entire communities. If we talk about Castle logics outside of the political prime of genetics. -- Carceral. This is conveyed on the most profound level on the content of underground hip-hop. Through the form of the music itself. I think that is another critical source of academics to take seriously.
LORI GRUEN:
Thanks Lisa, those are crucial and friendly ways of extending the thinking here and what I'm actually trying to get at is that there is a sense in which the system as it exists, as a genocidal system, as a system of creating and perpetrating disposability. Vulnerability. It is something that cannot be reformed from the inside, that is essentially what I'm getting at. It has to be abolished and that is part of what the ideas, the argument in favour of that. I also want to uplift the thought that you had and the important idea that this process of being considered disposable begins, especially for women, especially for women of colour, black women in particular, really early. This is not something that happens just when you get to prison. This is something that sort of happens in a very early place. I do not get to say enough in the talk today, but I have said in other places and will continue to say that I think about the structure of the human animal binary itself is a really rich source for thinking about how it is that so many people authorise this disposability of people who look like us, who look like humans, but are actually not considered part of the human sphere. If we look at that binary and we understand it's sort of normative construction, we can get a better sense, not just at how disposable other animals are, but how disposable certain humans are as well.
LISSA SKITOLSKY:
I totally agree and I feel like I can talk to you forever about very specific examples that I heard from my time. I want to look at the chat for a second. One of the people watching now, Elena, I am so sorry if I butchered your name, I just wanted to recommend the pod cast, "louder than riots." I would definitely check that out. I make a whole argument about that in my book. She has another question for all panellists, "what can we do to help abolish factory farms? Many people say they do not want to become league and even they do not endorse factory farming practices. Because so many people are resistant to giving up meat and dairy, what can we do?"
LORI GRUEN:
Well, I do not really think. I do think there is a sense in which how people participate in these systems is important, even if individual action doesn't really sort of itself constitute social change. I do know that there is a sense in which people are reluctant to take this individual action, but collectively that individual action can do a whole lot. However, I think, one of the things, let me just put it this way. One of the things that I have come to realise in the decades long work that I have done, thinking about trying to liberate animals as it were. Is that the standard arguments about what we should be doing haven't really taken too much of the grip, given that more animals have been killed and used in industrial animal production than before those arguments were made and that is not just based on the fact that there are more people. Factory farming and intensive animal agriculture has expanded all across the globe. It is also expanded from the land to the sea and so it is a massive industry and just as I would say, I do not really know other than sort of thinking harder and I will use Joe's line, I am a philosopher, I'm also an activist, but I think that encouraging people to recognise that disposable, the ideological nature of this disposability system and the way in which animals are transmogrified into food, the way they are thought to be food. It's a really important intervention. I myself try to think that an ethics in animals, I argue that it is really important not to see other animals, or other beings as edible in the first place. Once we can make that conceptual shift, we might do away with some of the demand at least four these intensive animal agricultural practices.
LISSA SKITOLSKY:
You so much, Melinda Hall has a question. She thanks you for the fantastic talk. "I would love to hear more about your work on disabled animals. It is clear that we systematically choose to create disabled animals in factory farming. Is there a sense that the function is particularly community capitalism? What can we say about why the production of disability among incarcerated humans is convenient to power?"
LORI GRUEN:
Great questions, Belinda. On the first question urban animals, Sally Taylor does a great job on thinking about the way these institutions are disabling animals. It is sort of as obvious as breeding birds so that they are so top-heavy, because that is the meet, the breast meat is what animal consumers like. That kind of genetic manipulation and breeding, makes it so that the animals cannot actually stand upright. They fall over, because they are top-heavy. Because they are bred to have more breast meat that can be consumed. There is also obviously a gender component here, that Carol Adams has spoken really powerfully about as well as many others. It is, it is actually quite tied to a very basic understanding of reducing these living feeling beings to commodities, to be exchanged in a market. If you think about fish, which most people do not think about this often. Literally trillions of fish are caught, or produced every year for consumption and this is in response to the capitalism. When you try to figure out how many fish there are, it is very difficult, because they are referred to in terms of tonnage. This is I think a really interesting moment where a living being, you cannot even extract the number of living beings, that have been captured and killed for consumption, because they are already commodified. In tonnage. That is I think an instance of the ways in which it is quite convenient for capitalism. I did also want to say that it is really important and part of the work that I was doing on disabled animals is about animals with disabilities that they pose really complicated challenges for thinking as I have been thinking about the, thinking of disability as an apparatus. Thinking of it as a social condition, because there are animals who, for example, who are neuro atypical and I know others that have been actually disabled in other kinds of contexts. It raises really tricky thinking for our way of thinking about disability, more generally. I did want to mention that. It is not just the animals that are being produced, being disabled in the service of capitalism and consumption and commodification, but there is also this group of animals who are disabled and thus need to be in our care and what that means raises real challenges for thinking about. An analysis of disability. I do not know if I… I would like to show you… I know I took was kind of depressing. I am wondering if I could, let me show you this picture. This is one of my friends who is, I do not know if I am going to be able to… I am not going to be able to do it, sorry, oh well. I have this great picture on my desktop.
LISSA SKITOLSKY:
I'm going to ask you questions together now because they both address the question of disposability. One is made Magowan, I was wondering if you could say more about what you think humans or animals are considered disposable once they are put in captivity? It is very intuitive and seems true, but why do you think that happens. Is it because captivity entails objectification, or dehumanisation, or something else?" Then the other question from Cecilea Mun, "thank you for your presentation, Lori, was mulling over your thoughts. I concur that carceral is problematic for so by wondering whether the logic between human and nonhuman comes apart when we consider the agency that is also involved in human incarceration." To let you know a bit more about where I'm coming from, I think your argument works really well when applied to members of marginalised groups. Perhaps not so easily with non-marginalised people. For example, I may not think an unrepentant Nazi murderer is disposable, but I might think that incarceration is still appropriate and people might think that this is still a way of thinking that they are disposable.
LORI GRUEN:
Those are huge questions. The second question I missed. Looking out the Nazi murderer, there is the abolition of prisons and that will take us far… It will take us to another set of issues, but I want to say that what I'm suggesting is reforming certain systems that are predicated on the logic that identifies a logic that is not simply about domination of something at the same table or a table nearby, so part of your group that you recognise as a bit different, and obviously different is a nice way of saying someone you can tolerate given the social, economic and social systems that are already in place. I think there is a problem there. It makes it seem like it is nice, but the first logic might authorise a certain kind of punitive response to certain individuals who violate social norms, but the disposability, the logic I'm thinking of is underlined in the problem of disposability is not logical since there is a normative responsibility. Disposability, you get discrimination and domination, and the cultural logic sees it as less important and the work to repair the inequality is going to be work that brings those individuals whether they are humans or animals within the magnanimous sphere of equality or recognition or consideration and that is an important analysis of domination. I don't want to diminish it, but I recognise there is something more ontologically problematic and the notion of disposability is the logic that creates disposable others. Not others that are dominated or disrespectful or treated badly. -- Disrespected. Those who are disposed of. That is the idea. I don't know if that answers the questions, but if you have the dangerous view, like the Nazi idea or the dangerous view, those few are not disposable. It is a different level of disposability.
LISSA SKITOLSKY:
As a Holocaust scholar, I struck out the constant Nazi example. It is incredibly problematic. We have time for one more question. This is from Laura. Thank you for a great talk. Your interview with Misha on Monday was great and my students felt the idea of a cultural space was in danger of being too broad to be useful given how many spaces can be somewhat controlling. Do you worry that the category of cultural space is overused? For instance, the objective of the term being applied to universities during the pandemic, and hospitals. Do you support a distinction between cultural spaces in a b sense and a weak sense?
LORI GRUEN:
Excellent question. There is a movement that has been developed over many years. A number of important revolutionary scholars have been active in thinking of abolishing the University, thinking as it as a cultural space. I feel uneasy about that. I think it is important to recognise, my use of cultural logic is different to geographers and abolitionists and other scholars and activists have been using. I actually think the notion of the cost logic I'm talking about is aiming to be ber. Other than the ubiquitous notion of cultural space where it is a space of control and confinement and a space of connectivity. -- Captivity. There are degrees and it is so important to say what it is we are talking about when we talk about captivity. I think of it as something that is ber than simply… Captivity is a way of understanding captivity. You don't have to agree with me, but I think it is a place where you are not able to control and you have no power. The power is focused on you and you have no control. The other spaces that the students are right to notice, there is power that you retain. Does that mean they shouldn't be called cultural spaces? I don't want to tell people they cannot say that, but it seems there is something useful about thinking of them that way because it leads to a conversation about whether or not there is control or if logic is operating, and what kind of logic is operating? If it is the second source that generates and emphasises disposability, that is important and it tells us how other systems of cultural ways are mentioned can support the ber person. I don't think it is bad to make the decision and distinction, but to continue to use this, but to be clear what you mean when you are using that term.
LISSA SKITOLSKY:
It is a good idea to think about the home as a cultural space. This is my experience. When you are subjected to being ritualistically molested, that is something we don't think of. We romanticise it, but that insidious connection between girls who are molested and raped. And those who wind up in prison. That is me. You gave a great answer and you had me going. We are technically out of time but there are more questions I would like to ask if you are up for that. One says thank you for your talk. I'm wondering about is that this is where they are more valued than black undocumented immigrants and disabled people. Going vegan does not protect undocumented farmworkers or children for being exploited. Could you talk about that?
LORI GRUEN:
That is my point altogether. One of the things the analysis I'm proposing as the work that Claire Kim is doing and a number of critical feminist study scholars are doing is precisely what I'm doing with Alice Crary which was mentioned, the animal crisis, that is doing that. There is obviously a long history of thinking about animal ethics, if you will, that is bly within a liberal humanist frame that is challenging. I think some of the problems Francisco is mentioning is precisely from that perspective and is a perspective I don't… I think it needs to be challenged.
LISSA SKITOLSKY:
Another question. While I see your point about incarceration of black people and women and racialise Asian issues in the United States, how do you see incarceration of those that might be in dominant positions? For example, those police officers who killed George Floyd? Should they not be in prison with conditions of confinement?
LORI GRUEN:
These are questions that we are always thinking about in the context of abolitionist practice. I think importantly I myself as a long-time abolitionist that has multiple views about abolition in different context, but I think "shouldn't Donald Trump go to prison?" I kind of do. I understand the desire and impulse, but the idea is that the system itself, that is not the right punishment. It does not cause anyone to feel better. It perpetuates the system of the industrial complex that is one which pretty much nobody benefits from its existence other than certain corporations that are making money from relatively cheap labour, that is available in the present context. The impulse to want to incarcerate the bad guys, whoever they happen to be, is one that we internalised as it is going to provide us relief and it doesn't provide any one relief. It does not mean we should attend to the real serious pain that victims and victims families experience, but the prison industrial complex doesn't do anything to address those issues.
LISSA SKITOLSKY:
The way I put it is the idea of prison or nothing as a consequence for breaking the law looks at the poverty of our moral imagination. We cannot conceive the realistic alternative and that is pathetic. The abolitionists should not be put in that position. That is not what we are talking about. You answered that in a generous way. It is a way of deferring the point, really. Thank you so much. I learned a lot and that was wonderful. Thank you, everybody, for coming by. Remember the conference continues tomorrow as well.
JONATHAN WOLFF:
Thank you, Lissa and Lori. A wonderful session and very lively way to end. The context was pessimistic, but there was an optimistic voice somehow at the end when we talk about other instances. Let me thank the participants and everyone who asked questions in this session earlier today. That brings the session to an end. We come back tomorrow. Let me remind you we will continue with a social event where we will put people in breakout groups and they can discuss the conference and other related matters. I want to mention to the chairs and the speakers today you have received an email with another link that will take us through to a short Zoom discussion for feedback. For the speakers and chairs and participants, let me thank you all and let me thank Shelley for putting together this truly incredible program. I'm learning so much in every session. Jamie, thank you for the IT. Katie helped with the questions. I hope to see as many of you as possible tomorrow. And as many of the panellists in the other sessions. Thank you. We will close the session now. I hope to see you tomorrow.
11 December 2020 – Day 3/3
JONATHAN WOLFF:
OK, so thank you everyone for joining us today, sorry for the slightly chaotic start but it adds to the excitement of a live event and so on. This is not a recorded event. Very pleased to invite you and welcome you to today's conference, or the third and final day of our conference on philosophy, disability and social change. We are delighted at how well it has gone so far and we are sure it will continue in a similar spirit today. Our first speaker is -- Michelle Ciurria and she is a philosopher of a published book from Routledge this year, 2020. It is the first book length treatment of deception or feminism and moral responsibility together and it is really an exciting read. I look forward to reading it, particularly reading the preface, I see it was written out of love and abrade. That is a great combination. -- Rage. Michelle has completed many philosophy journals and she is talking today on chronic fatigue and disability. I will pass over to Michelle, just in a second, the two things I want to say. If you want to use the captions, there is instructions in the chat. Please look at the CC at the bottom of your screen, cc and closed captions. If you click on that it will give you a number of options. We recommend that you look at the subtitles and the full transcript if you want the full benefit. They are coming up too small, you can adjust them on the subtitle settings. When it comes to the Q&A. If you could please put any questions you have in the Q&A. You can do that at any time during the talk. Then, I will put those questions to Michelle later on. You should put your questions into the Q&A, not into the chat. You are welcome to use the chat for other purposes. OK. So, with no further ado, Michelle, over to you.
MICHELLE CIURRIA:
Thank you, I'm very honoured to be here festival and I have enjoyed all of the presentations. Thank you very much. This presentation is on Capitalism and Chronic Fatigue. In this presentation I'm going to offer a biopolitical discussion on CFS. First I will describe what CFS is aware describe it to be a disability which is not scientifically expendable. I will expand on this argument by saying different CFS in different social groups have risen under capitalism. More specifically, groups are susceptible to CFS because expropriation puts them at risk of neglect, trauma and exhaustion. Chronic fatigue syndrome is defined as an expense putting the last next six months, accompanied by symptoms including headaches, unrefreshing sleep, muscle pain and cognitive difficulty such as memory and concentration problems. I have these sets of expenses most of the time, I am always tired and sometimes I cannot get out of bed. I have episodic headaches, muscle pains difficulty concentrating and difficulty speaking. At times I feel relatively energised, but most of the time, I have experiences that fit the so-called symptomatic profile of CFS. Because I take CFS to be a disability, I prefer to say I'm chronically fatigued, rather than I do have chronic fatigue syndrome as I take a disability to be a sociopolitical stone summer to raise, rather than a biological phenomenon. To quote Shelley Tremain, "disability is a historically contingent apparatus of power, not a natural feature of the world. I quote just as I take myself to be a white woman, not a person with whiteness and feminine co-gender, take myself to be a chronically fatigued person, not a person with chronic fatigue syndrome. The notion that CFS is a disability is controversial, but I think it has the features of that critical disability theorists tend to attribute to disability. Namely, I take CFS to be one constitutive by a complex of complicated set of biopower apparatuses. Two, which produced distinct types of oppression, such as ablest prejudice and workplace exclusion. As per Shelley Tremain's definition. I take conditions one and 2 to make a CFS, three something that the disability rights movement has a reason to promote justice for all. As per Elizabeth Barnes's definition. I should note that Tremain and Barnes provide substantially different perceptions of disability, but the point of that is that on either one, CFS would possibly count as a disability. I also take CFS to be something that one can have reason to celebrate as it can confer epistemic and emotional advantages, such as privileged knowledge of ablest oppression and a passion for justice. It can form the basis for meaningful relationships and political solidarity. These advantages are consistent with the understanding of disability as why the disability pride movement. As is the recognition that CFS is a target of ablest oppression, which leads to adversity. Precisely, because CFS is a disability, it can't be reduced to a medical condition, sensing neither of the biopolitical apparatuses implicated in a CFS, nor the political adversities and epistemic emotional advantages that come with it. Can you explain by mainstream medical science. This follows straightforwardly from the definition of the affairs as a political construct. Of course these claims are controversial, especially, number one, in this presentation, I want to lend credence to one by and I think some of the hidden political factors that play a role in a sea of us. Due to time constraints, I will focus on just one dimension of CFS. It's prevalent in politically oppressed groups. This is a fruitful point of entry, because as a drill and a chart argues, physiological differences across social groups are under close scrutiny, partly but caused by political factors. For example, women experience a disproportionately high levels of IBS because they suffer high levels of sexual assault and it changes the gut microbe I am. Thus patriarchal violence partially explains high rate of IBS in women. Along with their minds, I want to argue about capitalist labour relations, partly explain why higher rates of CFS in expropriated groups, by which I mean groups without the resources and capacities confiscated without the minimal level of protection afforded by the standard labour laws. This analysis will contribute to Martin Russell's claim that disability is "a product of the exploitative economic structure of capitalist society, one which creates and then oppresses the so-called disabled body as one of the conditions that allow the capitalist class to accumulate wealth." In what follows, I will outline the different rates of CFS to different groups. Then I will explain how Marxists explain this group level difference. Most people know that women are more susceptible to CFS than men. Few know that if you look at is prevalent in racial groups. Historically it was thought to be most prevalent among white women due to the medical racism and classicism of the time. Recent studies have revealed that African Americans, Native Americans and Hispanic Americans have lower rates of CFS compared with the white American majority. As the people in lower social economic groups compared to high SEF people. The groups most susceptible to oppression are also more likely to experience CFS. Let me explain what I mean by capitalism. I follow the Marxist tradition in understanding capitalism to be an industrial mode of production that allows an elite few to accumulate wealth by subjugating the majority of people, especially members of historically disenfranchised groups to a regime of exploitation and expropriation. Capitalism then is not simply a system of economic exchange, it is a system of oppression that is historically disenfranchising groups to subjugation. To quote Anthony Fraser, "capitalism is a mode of accumulation that is simultaneously a system of domination." The disproportionate impact of capitalism on historically disenfranchised groups is captured in the terms "racial capitalism." Coined by Cedric J Robinson Olufemi Taiwo and Liam coffee bright. "Patriarchal capitalism." We can have one without the other. Capitalist class structures and hierarchal sexual structures as well as racial structuring are locked in a mutually reinforcing dialectical relationship which give rise to the inevitable hierarchies of oppression." One reason for thinking that these systems cannot be decoupled is that capitalism doesn't just submit subject to oppression, it creates ex-pro real subjects. As Cathy weeks puts it, the weight relation generates and not just income and capital, but disciplined individuals, like Governor Bill subjects, worthy citizens, and responsible family members as defined by the logic of patriarchal racial capitalism. Indeed, given its centrality both to individuals lives and the social imaginary, work constitutes a particularly important site of interpolation into a range of objectives! Subjectivities." Nancy Fraser agrees that capitalism constructs exploitable subjects through subjugation. The position to Marxist thought, the free worker on the one hand and the X probable contract on the other. This division is a contribution to classic Marxism and emphasis on two main classes. Capitalist whose only means of production and producers who must sell their labour in order to survive. Capitalism as such allows corporate owners to exploit the working class by paying them less than what they are worth. That is by confiscating the surface! Surplus value of their work. Along with the proletariat class, capitalism creates a racial upper class that is subject to not only exportation, but also expropriation. A regime that works by confiscating capacities and resources and conscripting them into capital circuits of self expansion. Expropriation is in many ways, more akin to the colonial settler states of original accumulation of assets through slavery and genocide and exploitation work as it is not regulated by labour laws. In modern times, expropriation tends to take the form of predatory loans, prison labour, corporate land grabs and civil applications. -- Complications. These practices don't suppress their targets, but racialised the target group by marking it as a proper object of a noncontractual, often biological confiscation rather than a subject of full citizenship rights. Both are focused on racial expropriation in the article in question, she acknowledges that other oppressed groups are susceptible to other regimes of expropriation. For example, are expropriated through unpaid health giving, caregiving and social violence. These regimes of expropriation it may partially explain why rates of CFS are higher in women, like indigenous and Native American. Since appropriation puts people at risk for conditions that could trigger CFS according to their leading scientific theories. These I should note ultimately inadequate because they failed to situate biological factors in political context. Although the CDC says that there is no known cause of CFS. Two of the leading speculative explanations are a viral infections, be physical and emotional trauma. These triggers are more likely to affect members of X appropriated groups, due to the nature of expropriation. Consider the forms of racial expropriation, highlighted by Fraser, predatory loans, corporate land grabs and prison labour. People susceptible to predatory loans and corporate land grabs are vulnerable to homelessness, which is a risk factor for viral infections, especially airborne infections, like the flu, TB, diphtheria and COVID- 19. Imprisonment is another risk factor for infection. In fact, some prisons have listed in these grounds, due to the high rate of coronavirus transmission and dad. In addition, both Forza displacement and imprisonment, partly due to inhumane shelter and prison conditions, correlate with physical and emotional trauma. Patriarchal forms of expropriation cause vulnerability. Caregiving creates a risk of viral infection insofar as caregivers may need to be in close proximity to one with an airborne virus without having access to the personal protective equipment afforded to paid emergency responders. Sexual violence is a risk factor for sexually transmitted infections, as well as a source of physical and emotional trauma. Caregiving may also trigger emotional trauma when caregivers do not receive the material and emotional support they need from their communities, including PPE and basic respect, which is the case for many women especially those of colour. In fact, the UN says women's burden of an unpaid care work has increased due to the pandemic, the rate of gender-based violence is increasing exponentially. Thus, patriarchal expropriation may be an un-analysed political cause of high rates of CFS in women. Having said this, we can't know for sure whether viral infection and trauma play a role in CFS due to lack of sufficient data. But there is a ready-made explanation for the call feature of CFS for more than six months. Tiredness is the focal point of Marx's critique, which theorises tiredness as a byproduct of the capitalist mode of production. While ordinary tiredness may not be identical to chronic fatigue thereof -- there are similarities and prevalence in both cases, which suggest there could be similar causes. Notably there is significant overlap in rates of CFS and rates of tiredness, according to the CDC women report being more tired than men. The biggest tiredness gap is in the 18 to 40 for -- 44 age group, childbearing age. There is a racial sleep, which creates a racial tiredness gap. The CDC reports that healthy sleep duration is lower among native Hawaiians, Pacific Islanders, non-Hispanic blacks, multiracial non-Hispanics and American Indian and Alaskan natives compared with non-Hispanic whites. Higher levels in those unable to work or unemployed compared to employed respondents. People with poor sleep quality tend to be more tired during the day, which means groups with high rates of CFS are more likely to be tired. According to Max's on tiredness it's a byproduct of capitalism, the Industrial Revolution transformed the psyche of the individual owing primarily to changing cultural conceptions of the value of work and an increasing commodification of time. In the industrial workplace the pace of work was no longer determined by nature, the seasons and the weather, as it has throughout all of human history, but became dictated by abstract rational principles such as clock time and measurable productivity. Factory workers were false to keep pace with machines, performing the same repetitive movements over and over again all day long. As Marx put it in 1867, "In the factory we have a lifeless mechanism which is independent of the workers, who are incorporated into it as its living appendages. Wearisome routine of endless drudgery in which the same mechanical process is ever repeated, is like a torture of Sisyphus, the burden of toil, like the rock, is ever falling back upon the worn out drudge." At the same time, people began to see work as the source of their primary source of meaning in life. Of course, this is quite irrational, but it was facilitated by the popularisation of a secularised version of the Protestant work ethic, which treats work as a moral obligation and social responsibility. Any resistance to the drudgery of the daily grind is perceived as a sign of moral corruption. Through this ideology capitalism managed to produce constituents only exhausted workers. As Weekes puts it, "What is essential about the work ethic is what it could do, deliver workers to their exportation, not just by manufacturing subjects consent to capitalist exportation, but by constitution -- constituting exploitative and exploitable subjects." Although Protestantism is no longer the dominant religion it still haunts the capitalist machine creating the working class. From Weekes's analysis is an account of expropriation, which is exhaustion in its own right. Due to the limit of time I can only give a couple of examples. Above I discussed auditory landing, one of the more salient examples of predatory lending was the high rate of sub-prime loans given to black and Hispanic homeowners, just prior to the 2008 housing crisis. This practice saw higher rates of foreclosures for black and Hispanic households. To get out of deck -- debt these families had to find provisional housing, work harder in their jobs, bargaining with banks and in some cases declare bankruptcy. So this gave rise to hyper- exploitation, those foreclosure victims then heard modes of confiscation. Next, consider unpaid housework. Feminists have argued that on top of the standard worship women often have to do a second shift in the home, providing the majority of uncompensated household labour. Naomi Wolf argues they are subject to 1/3 shift created by the demands of the patriarchal beauty regime. These extra shifts are forms of expropriation that impose additional burdens on many women. The combination of a standard work schedule along with unpaid shifts create a higher burden of exhaustion. The tiredness caused by expropriation could help to explain the core feature of CFS, fatigue for more than six months. As well as why chronic fatigue is more common in expropriated groups. It's -- if chronic fatigue is higher in expropriated groups could be longer lasting. To summarise the main points of this presentation, I argued capitalism and exportation are inextricably linked, and acceptable to not only exploitation but expropriation. Expropriation makes people vulnerable to the hypothesised triggers of CFS. And also causes severe and inescapable forms of exhaustion. These political factors help to explain the higher rates of CFS in women and certain racialised groups. Since CFS has political causes it can't be adequately explained by medical science, much less fully eliminated by medical science. The only solution to the adversity faced by chronically fatigued people is to abolish capitalism, by which I mean racial patriarchal capitalism, which necessarily produces expropriated and exhausted subjects. Thank you.
JONATHAN WOLFF:
Thank you so much, Michelle. A really interesting talk. I'm sure we're going to have a lot of questions. In the first one is from Tatiana, does the fact that people can recover from chronic fatigue syndrome host a challenge to its classification and its disability?
MICHELLE CIURRIA:
Yeah, it's hard for me to answer this. I was going to say this in the introduction, I just started working on critical disability theory pretty recently in my career, because I was initially working on mostly feminist approaches to responsibility. So I can't exactly say I can answer these questions with a great deal of authority. But I'm learning a lot from this conference! So yeah, I don't know if that would disqualify it, because I don't think a disability necessarily has to be permanent. Some disabilities are episodic. There is also the possibility of, for example, I guess you could be born deaf and get a cochlear implant. But that doesn't negate the fact that when you are deaf you had a disability. I guess even with a cochlear implant you were born deaf. I don't think a disability necessarily has to be lifelong. Also, many people become disabled towards the end of their life. So for most of their life they are nondisabled and then they become disabled. So I don't think a disability has to be permanent. I think it can be episodic, it can be just at the start of your life or just at the end, or in the middle. So I think that is something you can extrapolate from other examples of disability.
JONATHAN WOLFF:
It's interesting, some of the received terminology around distinctions of disease and disability, and many different words you have for illness and sickness, and the different ways in which they function sociologically. So you might phone your boss and say "I can't come in because I'm ill." You would never phone in and say "I can't come in because I'm unhealthy." The whole terminology here is worth investigating. We have a question from Julie Maybee, who says thanks for a terrific presentation, do you think that deindustrialisation may also increase expropriation?
MICHELLE CIURRIA:
Another very difficult question! Yeah, it could. Deindustrialisation, I didn't think about that part of that aspect of capitalism that much. I guess it depends. We could have some level of deindustrialisation due to climate change, because climate change could interfere with production if it becomes sufficiently severe. Even now I think it's interfering with agricultural production. So if that happens due to climate change that could exacerbate expropriation, because expropriation actually, on Nancy Fraser's analysis, it tends to occur during, it gets worse at times of crisis. When expropriation is not generating the surplus value corporate owners demand they tend to use expropriation. To get labour for free or very little money. So I think, I guess it depends why deindustrialisation happens. If it happens due to a crisis like climate change it would probably exacerbate expropriation. But if it happens voluntarily, through some organised political strategy, it could reduce expropriation. So I would say it depends on circumstances.
JONATHAN WOLFF:
Thank you. A question from Christine Overall, Christine asks, thank you very much Michelle, as I listened I wondered how chronically fatigued people could be of value to capitalist forces? But then it occurred to me, these mechanisms produce docile, submissive, and rebellious subjects who are unlikely to resist their repression, would you agree?
MICHELLE CIURRIA:
Yeah. I think so. I think that's one factor. I think that disability in general is very useful to the capitalist class. And what Matt Russell talked about this write about, she talks about having a permanent disabled class, race plus population is beneficial to the capitalist owners. For one because it instills fear in workers, so workers are so afraid of becoming disabled and in misery to due to lack of social security but they work harder and value labour even more because they can be even worse off, because they could belong to the surplus population comprised predominantly of disabled people. So that's one element of it. Also having a large population, having alike a stable population reduces inflation. Historically that has been the aim of capitalist and the third, it has been to reduce inflation by maintaining 46% on unemployment, comprised largely of disenfranchised groups. I think, having stable unemployment is good for capitalism. Since, disabled people tend to be unemployed, that is part of the system working as intended.
JONATHAN WOLFF:
Thank you. So is there a couple asks a question I was dreading which contains medical terminology, which I never say out loud. Sarah asked, are you defining CFS as something separate from myalgia, or post viral syndrome -- fibromyalgia.
MICHELLE CIURRIA:
I do not think that I am, but I know that defining… I guess those are typically used interchangeably. I think it is the same for both. I would say that for my purposes they are the same. I think that it is very controversial to say that, to say that either of those is a disability and not a disease or an illness. The reason that I am saying that, I have chronic fatigue syndrome and I've had it for a long time. You could potentially have it for the rest of your life. After the onset of chronic fatigue syndrome and I see it as a disability, because of the definitions of disability that exist in the literature, because it has as biopolitical causes. Because it is something that I think the disability rights movement have something to advocate for. Because it comes with these challenges and benefits, I think it fits the definition of a disability. I know that it is more common to define than other diseases or illness, I am contesting that. There are very good political reasons to include chronic fatigue syndrome under the definition of a disability. One reason is that often people with chronic fatigue syndrome, you know, are forced to ask for accommodations, or have mobility issues. So they have the same political interest as many people who have a disability. They have similar political motivations.
JONATHAN WOLFF:
Thank you, so now we have a question, really, I guess about a medicalisation. The medicalisation of disability. This is from Elena who asked, "do you believe that ME, CFC activism, even if the form advocates more biomedical research as opposed to medicalisation." This is quite a good question around the general framework for you. Is it true that you would be proposing medicalisation? Or biomedical intervention? Are you seeking solutions more socially?
MICHELLE CIURRIA:
At the end of my presentation I said the only solution to chronic fatigue syndrome is political and it involves resistance to capitalism. For a variety of reasons, so I think, I do not really think that medical science… Let me just start here. A lot of people are getting post viral syndrome from COVID- 19, now. Which is very similar to chronic fatigue syndrome and a lot of researchers are saying about some people post viral well result in a long-term chronic fatigue syndrome, they will have that long term, if not for life. I do not, I do not see how science can prevent chronic fatigue syndrome from occurring after exposure to a virus. Maybe they could find, well… Yeah.…
JONATHAN WOLFF:
They may find a steroid, or something? You can imagine someone by chance coming up with a pill that could give you energy back.
MICHELLE CIURRIA:
I do not think it is very possible that they are going to find that cure, but I am not against, I guess I am not against them finding it. I think the time being, that is kind of a mute point, because people with chronic fatigue syndrome still need political advocacy and accommodations and things like that. There are still these political issues that are going to occur as long as science doesn't like find a cure for chronic fatigue syndrome. Also, I think that even if scientists did find it secure, this miracle cure. It would not change the fact that oppressed groups are exhausted, so it is a really substantive question how much that exhaustion from expectation and expropriation contributes to chronic fatigue syndrome. So, that certainly cannot be eliminated short of eliminating the political causes.
JONATHAN WOLFF:
Can I put is a little bit further. It is a fascinating question about the relation between political structures and chronic fatigue syndrome. I think, when you say that political change is needed. I think there are a couple of things, at least two different interpretations of that. Maybe, they are compatible. One would be that there is a physical syndrome which is caused by a political economic system, or at least a system that intensifies it. If we change the system, then people will undergo physical changes. Another way, which would be much closer to the social model of disability would be to say that chronic fatigue syndrome is only a problem under capitalism. If we had political change, these physical characteristics of people would just be difference between energy levels, rather than something that was a disability. Under which of those there may be somewhere in the middle, would be the position you would be taking.
MICHELLE CIURRIA:
Have to think about that more. Under Marxist analysis, exhaustion, exhaustion is caused by capitalism and it is not a good thing. I think that… Yeah, I guess chronic fatigue syndrome, the exhaustion that is inherent. I guess I cannot really speak to what ultimately causes the main symptom of chronic fatigue syndrome exhaustion. How much… I look at different explanations, I guess I am not in a position to arbitrate all good explosions, but I think -- all good explanations. I think looking at chronic fatigue syndrome it brings to light the fact that capitalist labour relations are very exhausting. I think that certainly contributes to the experience of chronic fatigue syndrome. Because, it creates his experience of exhaustion and it is with this experience, it is difficult to enter the workplace, because the workplace is not really designed to be implicit -- inclusive. Or accessible. I guess, just looking at chronic fatigue syndrome it brings to light this a more general problem and I guess that is just what I am trying, I guess that is more like what I am trying to speak to you today. Because I can't really speak to the medical analysis… The thing is nobody knows really what, if there is a relationship between, what the relationship between viral infection and chronic fatigue syndrome is. As I said, medical organisations say that is like a speculative expiration, so I cannot really speak to that. -- Exploration. I think it is something that has underlined political causes that we all have an interest in dressing. That is the take home.
JONATHAN WOLFF:
I'm going to take a question from Kathleen Lemon, Kathleen asks "it was very interesting to see the figures for CFS to bust the myth that it is particularly a disease of the professional classes. Given that it is a kind of mental and physical burnout, which is not restored by rest L. These figures are what you would expect for the reasons you highlight. I wonder, if you can say more about the way in which work and the imaginary surroundings are important here. Firstly some people who become burnt out in this way, much of the pressure is driven by being given roles with which they identify and believe in and try to fulfil in circumstances where resources are scarce. The production of subjectivity is clear."
MICHELLE CIURRIA:
I think that is true. I think that is a good point. I am not sure what to say to that. I do not want to speak, I cannot speak for everyone with chronic fatigue syndrome, but I feel like I am capable of participating in society. Society is not really designed to be accessible, so it creates these barriers. I think that, generally, people with chronic fatigue syndrome cannot contribute when there are these political obstacles. Yeah.
JONATHAN WOLFF:
OK, let's go back to the question that is rather similar to the ones about medicalisation around races. Jan says "thank you for your amazing presentation as a type I diabetic, I am very interested in how severe stress and exploitation can lead to such severe physiological impacts. In your opinion, is is the domain that the medical sciences should also tackle as part of the diagnosis? For example, should these be kept separate."
MICHELLE CIURRIA:
Yeah, I definitely think that science should address these political issues. It is really not within the realm of science to look at political causes. Yeah, I mean like disability is basically a mismatch between your body and society. So, society is basically creating disability, that is part of Russell's theory. Society is basically constructing disability by forcing people out of the workplace and out of public life. So, I think that, yeah, science should look at the political factors that contribute to disability. They really are not considering disability as a political construct. They are not looking at it from the point of critical disability theory, or mad studies. I do think that it would be in their best interest to incorporate those perspectives. I do not, maybe science cannot do that, so I think… Yeah, I guess, that is kind of outside of the remit of science. I do not know if it can do that, but it would be in medical professionals best interest to pay more attention to the environment and to political expectations.
JONATHAN WOLFF:
There was a huge literature now on the social determinants of health. The idea of a social radius of health. It is interesting whether or not it is looked at with disability. It has been much more about health and illness, I think rather than long-term disability. Maybe it may be a very fruitful area to look. In some ways, you are providing a much more radical version of things that are already happening in the liberal mainstream discourse. This is pushing it much further.
MICHELLE CIURRIA:
Actually, when I was looking at scientific explanations of chronic fatigue syndrome. I wish that they had put did a lot they said viral infections, trauma, but I wish they had said expropriation. Exploitation under capitalism, I would have loved to have seen that as part of the scientific explanation actually. Yeah.
JONATHAN WOLFF:
If you look at Michael marmot's work on workplace stress and how it takes, the lower you are in the hierarchy, the more years of life you lose through the way in which the workplace is organised and control of your life and so on. There is quite a bit of work already in that area. I think this is probably a natural extension. Sorry, I'm asking too many questions are making too many points myself. We will go back to the questions. Mira Helen Rs, "can we consider CFS as an embodied resistance to capitalism. Recognising that the so-called mind and the body do not always work in what appears to be perfect synchronicity." Interesting.
MICHELLE CIURRIA:
That is a good point. Yes, I like that idea actually. It is an embodiment resistance to capitalism. Yeah. That is a good, there's actually a good way of thinking about it, I am going to think about that more. -- Thank you.
JONATHAN WOLFF:
There is so much and how the body keeps the score, this is again a more radical version of things. That being said. Here's another question, it seems to be crucial for medical practitioners to take CFS seriously in early stage of the viral infection, so while there is no cure, rehabilitation therapy may prevent the condition being chronic and lifelong and people with symptoms of fatigue, headaches et cetera, are less likely to be taken seriously. Not in the best position to get access to healthcare facilities. So I suppose lack of early diagnosis and treatments, to disadvantaged groups, is that something that contributes to the overall pattern?
MICHELLE CIURRIA:
I think so, yes. Certainly inequality in health care would play a role in how you experience CFS. Yes, I think so.
JONATHAN WOLFF:
OK, I've now got the name of the person who asked the question, and re-anchor. -- (inaudible) the question I really wanted to ask you, I suppose it was about the causal claims. I know you are not making at this moment a very clear diagnosis, but at the end you did save I think that CFS was intrinsically linked to exploitation and expropriation. So the analytic philosopher is coming out in May, saying what is this linkage? Obviously it could exist or it seems it could exist outside capitalism, so it's not the capitalism is the only cause of exhaustion or chronic fatigue. Would you want to go so far as to say it is the only cause? Or is the claimant rather than -- rather that it makes it more likely or intensifies?
MICHELLE CIURRIA:
In my presentation I focused on how expropriation explains different rates of CFS in different groups in our society. Based on the demographic data. But outside of our society, could you have CFS? Yes. Because there is oppression outside of capitalism as well, for example you can have sexual violence outside of capitalism, you can easily have emotional trauma outside of capitalism, and you could have an exhausting work schedule if you are just oppressed outside of a capitalist, in a preindustrial society for example. So I think you can have CFS, you can have something identical to the experience of chronic fatigue syndrome outside of capitalism. So I don't want to say it's necessarily a product of capitalism, but I think capitalism certainly increases the prevalence of CFS, particularly within these especially oppressed and expropriated groups.
JONATHAN WOLFF:
I think you also said to me it makes the experience of it perhaps much worse.
MICHELLE CIURRIA:
Yeah, because I was thinking I guess CFS, the way we understand it and the symptomatic profile that has been attributed to it, I think that is actually an artefact of modern times. So I can't exactly take it out of this particular context. But I think you could have something similar, like a very similar experiential qualities outside of capitalism where you are reporting similar experiences, like I'm exhausted, I have difficulty concentrating, headaches. Now that I think about it, I think someone mentioned, or you mentioned the body keeps the score. That's actually a good way of thinking about it, when I think about things like PTSD, science is trying to cure PTSD but there are similar issues like do we want to erase that record of what capitalism or war whatever has done to a person? Do we want to erase that record? There are all these political issues about scientific approaches to PTSD. Now I'm thinking they are also relevant to chronic fatigue syndrome.
JONATHAN WOLFF:
We have a question from Shelley Jermaine, who says "Thank you for your informative and instructive presentation, given the relationship between racial capitalism and CFS, that you mentioned, do you think we should think of CFS and people with CFS in hacking terms as a transient kind of people respectively? That is as kind that can disappear with the abolition of racial capitalism?
MICHELLE CIURRIA:
Oh yeah, that's a good point. I guess it can exist outside of capitalism. Let me think. Could we eliminate it if we eliminate capitalism? I have to think about that more, that's a really good question. Because maybe we could eliminate the CFS on the current definition, because that's a sociopolitical construct. But I think that something similar to chronic fatigue syndrome could be brought about by many different forms of oppression, in the sense of violence or maybe exhausting labour outside of a capitalist context. Potentially. I'm going to have to think about this more, because I would be curious, I think what I have to do is look at this more from a historical perspective and look at how different or whether this occurs in different cultures, from a cross-cultural cross historical or longitudinal view. That's a good proposal, I'm going to have to think about that more.
JONATHAN WOLFF:
I can imagine a fantastic trade book on the history of (unknown term) and certainly for leisure, it is said in a Marxist historian, before capitalism there were so many holidays in a year. So all the home days when people just took days off. One thing that has happened particularly in North America and the United States of America is the number of paid vacation days shrinking and shrinking. So there is room for a cross-cultural and cross historical study in the experience of exhaustion.
MICHELLE CIURRIA:
I guess on second thought, I think chronic fatigue syndrome, the way we understand it is really linked to capitalism. I think it is very linked to certain kinds of adversities that we only have under capitalism, such as not having access to a lot of social institutions. And facing a lot of barriers that arise with capitalism. So I think there might be something distinct about it that does link it to capitalism. I'm going to have to think about that more, that's a good suggestion.
JONATHAN WOLFF:
I think this will have to be our last question, do you think there's a connection between CFS, capitalism and knowledge acquisition? Like how exhaustion might stop people being informed about current or past world affairs?
MICHELLE CIURRIA:
Yeah, I think CFS can give you privileged knowledge about political oppression. Because it helps you understand your society better, and how it's built. How your society is deeply patriarchal and it makes you kind of question the value of work, and the capitalist political system, or various political issues. So I think it is a source of knowledge. Similar to any kind of oppression.
JONATHAN WOLFF:
OK, it's interesting, that's a link with the theory that the things that lead to political disadvantage and a type of epistemic advantage, without necessarily calling them privilege. OK, so thank you so much Michelle, a really fascinating presentation, very lively and interesting discussion. We are glad you were able to join us. We will bring this first session to a close now. We will be back for the second session at five minutes past the hour. Just for people who are in the panel and the participants, just to inform you all, the cameras will stay on in the break, but we are in an informal session here for 10 minutes talking about technical issues and so on before we start on the next session. So Michelle, thank you so much, let me give you a round of applause on behalf of everyone! There's a lot of appreciation in the chat.
MICHELLE CIURRIA:
Thanks for those challenging and thought-provoking questions. As I said, I definitely have to think about this more because I am new to this discipline. Thank you everyone.
JONATHAN WOLFF:
Thank you so much. OK, thanks Michelle, and let's bring Emily and Tamsin up. Michelle, you can kill your camera and sound if you like. OK, Tamsin and Emily. Emily, you said you didn't have any slides, which is great.
EMILY DOUGLAS:
No, no slides.
JONATHAN WOLFF:
That keeps the technical issues down. Dancing, you seemed very comfortable before sharing the role and everything, anything to help you with now? Emily, any questions?
EMILY DOUGLAS:
Know, the one thing I'm going to do is I realise I didn't send the words from the land acknowledgement to the captioners, so I'm going to post that into the chat if that's OK. Just because some of the language around here might be difficult for captioners.
JONATHAN WOLFF:
That's a very good idea, and a big relief. So I suggest that we turn microphones and cameras for a few minutes. And then come back maybe two or three minutes past the hour. So we are ready just ahead of that. OK?
EMILY DOUGLAS:
That sounds great.
SPEAKER:
I just want to clarify for the questions I will individually message them to you in the chat.
JONATHAN WOLFF:
Sorry, I let the clock go one second over. Emily, are you with us? Jamie, are you with us to?
SPEAKER:
Yes.
JONATHAN WOLFF:
Can you give Tamsin the queue to get started.
TASMIN KIMOTO:
Good morning, it is demonic for me. Welcome to the last day of the session. I'm going to be chairing the session. I wanted to say thank you for organising this conference and to all of the staff who have been working on it and making it accessible and I'm grateful to whoever is captioning. As someone who relies heavily on captioning, you have been doing a wonderful job. Let me introduce me let me begin by talking about the format. If you are in need of captions and they are not on. Along the bottom of your Zoom screen there is a CC option and you can turn them on that way. We ask that you submit questions using the Q&A function which is located right next to the closed captions function. Questions that are submitted there will be asked to the presenter, the ones that appear the chat, unfortunately we may not see. Please deduce the Q&A function. To submit your question. -- Please use the Q&A function. Emily, will talk for about 30 minutes and then there are about 20 minutes of Q&A. Now I will introduce Emily. Emily R Douglas is a PhD candidate at McGill University in philosophy. Coming to us today from Montréal, traditional and seated lands of the con you go higher, she has a Masters degree in Emily like myself uses pronouns. They are the first special issue and phenomenology along with new phenomenon is of illness, manners and civility. They are here to talk to us about phenomenology and debilitation. Welcome Emily.
EMILY R DOUGLAS:
Great, thank you so much. Thank you Tamsin for the introduction, thank you Shelley and Jonathan for this incredibly accessible across time zones, across locations. Conference highlighting disabled philosophers. I am going to post a slightly longer land acknowledgement in the chat as Josh said yesterday, I think it is important when we are all sort of talking floating heads to say where we are coming from. Right now, I am coming to you from Montréal, which is for all. Now the captain is will be able to take off the names. The presentation goes beginning today, the first two thirds are from a chapter I recently finished my dissertation in the last third is kind of in progress. I think it carries over quite well from some of the questions that Michelle had about medically unexplained symptoms. With all that, we will start. So in the right to maim, Jasper K argues that debilitation and the production of disability are in fact biopolitical ends unto themselves. Which massive I and maim population in order to maintain control, also make our bodies profitable. So in this presentation, I provide a phenomenal logical is -- a phenomenological subject through the work of Franz phonon. Through distortion dystonia other young North African patient, Antoine F, we see how the debilitation of occupied Tunisians was experienced materially and used a capacitated symbolic colonial structures. Through paradox at all over determination and undermining of rural agency and volition. So my presentation today has three parts. The first part is an explainer of debility as a framework and how we might begin to explore phenomenology of debilitation. The second part is the discussion of muscle dystonia in phonons work. The third section describes the links between a masculinised labelled movement and feminist theoretical strategies for challenging our assumptions about volition. So the first part is debilitation, what is it? How might we approach it phenomenologically. Who are used of the contemporary, Western neoliberal construction of disability as a result case, as an accident, or something that can be overcome and cured. It depends upon a shadow notion of debility. Both the disability and debility carry some connotations of impairment for the general public. Yet, debility points to intentional injury. While disability is typically thought of, are often thought of as accidental, or congenital. Whoar are points out in recognising some disabled, others are excluded as a non-deserving of care. They are excluded because the process of their debilitation is not profitable and illegible and disability rights framework. This debilitation is frequently and geographical distance, with governance "here", debilitating and exploiting. It makes it quite easy to alight and cover over these things. Debilitation then is a mechanism used by both governmental and non-governmental forces to massive -- massive I conditions of population. Debilitation is primarily a tempura roll and processional that is a tool to be used by a regime of political power. Rather than a place where subjects could be located as debilitated rather than disabled. Further, debilitation does not involve only a loss or lack or putting things out of play, it makes them available. For maiming, for profit, or other ways of making so-called useless lives useful. This is called capacitated. The uses that come out of debilitation as an intentional injury. One more advantage the debilitation gives us is that it is a broad process and opens us up to considerations of chronic illness, medically unexplained symptoms and psychiatric access. Right? So part of studying debilitation will precisely require attention to the non-apparent, the sick but not disabled and the myriad of health omissions that remain. Unknown. So, as I said in this talk, I want to sketch possibilities for phenomenology of discipline -- meditation. This is important in the field of disability where there are still any philosophical studies that are not necessarily critically politicised and they may often lie upon a pyramid as a rude radicalised fact. Further, there is the risk if one follows only classical forms of phenomenology of losing sight of structural issues and a too tight focus on an individual. Where as these classical forms of phenomenology sought to uncover reportedly universal structures of experience. Contemporary formulations of the critical phenomenology, many of which draw directly upon the work in method. Frequently holds that phenomenology as a method must also question our social structures, who are gendered and racialised habits and it must strive only for descriptive, but ethical ends. So it is in line with these critical phenomenology is that I want to work. This is a quote, "It is not derived from expounding upon and phenomenological experiences of corporeality, but from evaluating the violences of biopolitical risk and metrics of health, fertility, longevity, education angiography." So these are not two different categories of phenomenologies that we are making, it's not coming out only three lived experience. Still, I hold that we can use this framework to look at the different experiences of the debilitated and disabled without placing them into binary categories. Allowing some movement. As Margaret Shildrick insists, and acute sensibility towards how debility is phenomenologically (inaudible) would create a difference in phenomenologies. Taking this into account, phenomenology of disability would not be a separate order from phenomenologies of debility, but would contribute to the broadening of such philosophical analysis. In the following sections I will expand on this theory of debility to reading Fanon's late 60s work. Apologies to the captioners for how many mansions there were phenomenology in the last section! Onto section 2. There are many disparate readings of muscular tension and spasms in the ratchet of the earth. As well as disagreements over to what degree Fanon might be endorsing refusal as a mode of resistance. The muscles are not seen that I is to or given their own chapter, muscular tension abounds and his descriptions are colonised individuals and populations. For some brief examples, Fanon describes muscular dreams, aggression is a demented, in muscles the release of this tension through dance or ritual, the seizing of the muscles in the face of colonial values, some Fanon scholars have said this muscular tension is an inner wish to political resistance. Or as an thing that is produced by the political environment. In this section I will say how this so-called psychosomatic muscle disorders were capacitated for colonial ends. As Fanon notes many of the patients he treated in both Algeria and Tunisia, had dystonias and hypotonia is. In fact, muscular rigidity appears in a whole group of his psychosomatic patients in the wretched of the earth. There were men with troubled climbing, running or walking quickly. Unable to bend their legs easily, he says of one patient that "No relaxation can be achieved, immediately rigid and incapable of relaxing of his own free will the patient seems to be made in one piece, he is constantly tense, on hold between life and death." So these symptoms are implicated within the colonial context, and they take on a role in medical treatment. Contemporary works in physiology and anatomy define hypotonia as simply an abnormal increase in muscle tone. While dystonia is a so-called movement disorder, with involuntary muscle contractions. Either intermittent or continuous, that result in twisting, repetition and "Abnormal postures." Rigidity, on this clinical level, is hypotonia present in all passive and active movements. It's worth noting clinicians disagree on and use various different tests to assess muscle tone. As well as that empirical studies have not found any consistent interracial differences in muscle mass or muscle tone. Yet stillness and rigidity were and I suggest still often are capacitated to facilitate colonial occupation. Fanon notes sub-Saharan African blacks and members of the diaspora have often been likened to animals in justifications for invasion or colonisation, he notes that North Africans and Arabs were subject to the trope of part of the landscape, vegetative, having instinctive lives, being inert and stable. I suggest that these opinions were not mere side-effects of the colonisation, but actually a necessary part of making the land and the stage ready for occupation. So I'm going to read this muscular tension in connection with both stiffness and agitation. I'm beginning the riff off Mel Chand's paper on agitation, where they highlight that often "Tension is the condition shared between a segmented rigidity, and the movement that is then dubbed insurgency or agitation." Very few scholars have written about the phenomenon of agitation in the psychiatric milieu, or on a case of torsion spasm. Nevertheless, I hold that these two lesser-known psychiatric papers which Fanon wrote with colleagues, reveal the entanglement of muscular tension with agitation. I engage these papers in conversation with Jan's observation building links between forms of agitation and the mechanisms of power that are formed around agitation. So agitation is not an incidental symptom, among those in the psychiatric hospital, nor is it universal in its presentation. It has often been, and still is today, treated as a problem in itself. And met with punishments coded as treatments. Such as physical restraint, forced chemical treatment, and or isolation from patients and staff. Rather than viewing agitation as an external influence or a wilful outburst Fanon and Asselah defined as reduced by confinement. Further, they state that "Agitation is above all a modality of existence, and expressive style." The agitated individual at once does and does not know what he is doing. Or if you will, he does not know what he's doing but he is trying to find out. So in combination with this bridge through agitation, we find agitated movement in the paper the case of distortion dystonia. This paper focuses on 21-year-old Antoine F, a young man from Tunis, based on the records he has a high record of being Tunisian or Algerian. Antoine had various motor abnormalities under the name of dystonia, from a young age. He began experiencing seizures at 20. So Antoine's motility is the most distinctive aspect of this report, for me. Fanon and Levy observed that his leg extensors were permanently hypertonic, as were his antigravity muscles are the ones holding him off the ground, yet his muscular strength was intact. It was not lost. Fanon and Levy also emphasise that the rhythm and action of Antoine's spasms, how they follow in a chain one after another, spreading like an avalanche. Overall, they observed this is a quote "Anarchic 10 passive spasms involving the head, the trunk, the right arm make a undulating walk in the manner of a puppet." Antoine leans against walls to balance the spasms, the authors say his gait is like a "Macabre clown." So the macabre clown description comes from Danish psychiatrist August Schwimmer's description of dystonia, Fanon and Levy use the phrase twice. This is a phrase that stuck out to me when I was reading. It presents dystonia primarily is about movement and it engages the whole background of notions of racialised motility. Immobility and rigidity. So from where they took the clown phrase, they also refer to the Greek myth of laocoon. This is a Greek myth, this Greek figure is often shown in sculptures that emphasises facial expressions of suffering. So the Crown and -- clown and Laocoon denote distortions as something to laugh at, but also something in pain, something grotesque, and associated with death. So of course, much of the normative image of the human has focused around a vision of uprightness and clear movement, whereas jerks interrupted smoothness and fluidity and jagged movements here disrupt normalcy. In this case I think the movement is already racialised and Antoine is pathologist. In my phenomenological experiment see I want to caution against making any specific interpretation of Antoine's lived experience as an individual. He is capacitated in the clinic at six, as part of a mass of disabled and durian is -- Algerians who have become patients for clinical psychology. We can say whether he experienced muscular tension, how he reported it, and how measurements change over time. But we must not appeal to descriptions of Antoine's movements or his testimonies as pure or unmediated experience. Nor indeed do we have proper access. Antoine is in fact only one example among the many that I think we could use as fragments for a phenomenology of disability. -- Debility. To read Antoine as a heroic, resistant figure, might make him seem like an exception in contrast to the others suffering around him. So Fanon does not indeed prioritise Antoine in his writing, nor indeed to any single individuals dominating the wretched of the earth. So I'm going to briefly enter the third section of the talk, in this section I'm briefly drawing upon three feminist philosophical accounts of descriptions of volition. In order to think through debilitation and how debilitation is related to the wheel. This part of the talk is very much sketchy, I will discuss three concerts, firstly racial ability tuning. Second, social offering from Lucio Bierria, and I will talk a little bit about wilfulness. I'm really open if anyone has ideas on how these things may work together, if they work differently, if one is more advantageous than the other for my purposes. The first notion that I bring in is from Mel Chan's work on agitation, which I imagine. Chen describes racialised ability tuning, which they describe as "A form of disability or difference soaked embodiment or a kind of gestural containment to which all our subjects and whose entertainments can be bio politically managed." This is a kind of tuning that they say happens between subjects, following unwritten racialised and disability focused gestural codes. For example, Chen describes instances of police violence is against agitated black people as being a site of gestural wrongs or missed tunings. Therefore, different attributions of debilitation volition. Whose was the wrong? If the agitation of disabled movement is a matter of tuning that cannot be guaranteed from one side or another then I suggest that this provides reason to question not only our dominant understanding of agency but also how these understandings are so demented as habits. Jan also has a long example -- Chen suggests, for a hunchback, if you watched long enough will come to decide it is a sort of stubbornness of the man behind it. This is another part of the norms of tuning. My second strand of thought that I think is related to racial ability tuning comes from this philosopher, Valeria. In agency and intention. "In missing in action, violence power and discerning agency, the area articulates the framework in the oppressed, particularly focusing on violence against black women." She argues that when we consider different acts, different things. Intention is not just authored by a single agent through their practical reasoning. She says it is also socially authored through others a translation of her action. So the area is drawing on a pre-existing meaning. Authoring, social authoring would work backwards to author the intentions of an individual. I am thinking here of the other types of muscular tension in that movement. One brief third interjection is that I think these questions about muscular volition link to Sara Ahmed's work. Ahmed has pointed out often racialised and otherwise subjugated individuals are subject to both depiction is overly wilful, or as well as. As defiant, or chaotic and under control. She notes the descriptions and the Nazis will, are raised to all human experience and distribute their worth. Indeed, it is significant that wilfulness and lack of will are both diagnosis. Some cognitive scientists and other scientists will use disorders of volition. To be too wilful is to be disordered, just as to have no will, or a lack of a will also raise. So really quick, social authoring, racialised ability tuning and wielding our three vectors through which I think we can examine the phenomenology of debilitation. To see how it debilitation is ceased in use. We can use colonial French forces is easing existing muscle tension in the canalised as well as creating tension through their hostile atmosphere. Translating this into general statements, whereby North Africans were cast as will those objects, or overly willing to walk towards violence. We could see this in the terms of social authoring in discordant systems of meaning. For example, in the authoring of the North African syndrome as a diagnosis, as a psychosomatic disorder that only affected the colonised in North Africa. I suggest we can see how these uses of debilitation, by colonial forces would lead into certain forms of a racialised ability tuning. With regards to the movement of racialised and equalities. OK, so to conclude, real quick. In this paper, I have argued that considering debility phenomenologically and settled typical assumptions about will volition and agency in regards to rationalising disabled individuals -- unsettles typical assumptions. First I began with the debility framework itself to rethinking the loss of his disability and lay the groundwork for phenomenology as a debilitation. Second, I brought this framework to Fanon's work. Not as psychosomatic, but is debilitation. I'm still working how a phenomenology gives us insight into these assignations of will, volition and agency. Thank you.
TASMIN KIMOTO:
Thank you Emily, so much for that talk. For the audience as a reminder, please submit your questions through Q&A. Then, I will ask them to rely on your behalf. -- To Emily on your behalf. What a fascinating presentation, I appreciate so much your attention to Fanon's critical writings. We tend to be overlooked on the critical writings on a Fanon. Thank you again for attending so well to that. I am going to start asking questions from the audience. Our first one comes to us from Shelley Tremain. Shelley says, "Emily thank you for an illuminating talk. At the outset of your presentation you said that you thought there were a number of connections between Michelle's presentation on your own. I perceived a number of continuities, but I would like to know what you think these connections are?"
EMILY R DOUGLAS:
Yeah, I was really excited to hear Michelle's talk, because I was thinking, "oh, we're going to have lots of meeting place both us in the audience." I think one of the things is that Michelle was considering how CFS is in some ways produced by capitalism, right? Considering, I think we are both holding the attention of, as somebody asked, "if it is produced by capitalism and if there were no capitalism, what would happen? Will be have these types of disabilities?" I think in a similar way, I am considering how certain kinds of debilitation is, audibility is our -- debility is produced was up we are also attending to, both Michelle and I want to -- both -- Chen and I want to attend the same thing. What is the symptom with the political environment? That part is really close with the work of my whole dissertation and trying to figure out what other political uses of saying it is resistance, not resistance. How do we hold these things?
TASMIN KIMOTO:
Yeah, thank you. So our next question that comes to us from Benjamin Carpenter. Benjamin says "thank you so much for a fantastic presentation. It is always great to hear from others working within critical phenomenology. I was wondering if you had further thoughts on the speciality of muscular tension? How this tension impacts the subjects relation to the space around them? Or perhaps to their ability to take place within it? I am thinking here of how the way one is able, or unable to go through a space shaped agency, but also serves as a site of wilfulness. It would be great to hear any of your thoughts on this."
EMILY R DOUGLAS:
Yeah, I love this question. There is so much room for this sort of work and there are lots of seeds to pull out of. One of the things that I am thinking about is, Fanon makes some marks about you must use all of your weight against the colonisers, rigidity and forces alike are sticking down. That might be part of like wilful non-movement, as well as wilful movement. Yeah, I also like, I am thinking a lot about the different kinds of… If your muscles are like habitually constrained in certain ways, this means like certain kinds of movements are not open to you, but certain kinds of movements might be open to you that are not open to many others. This, yeah, one of the sources that I am looking at. I have seen a number of phenomenological studies that really work with the muscles and kinesiology, but without as much of their political bridge to it. I am really interested in one of the authors who I like is Maxine sheep's Johnston -- Maxine Sheets-Johnstone. It's fantastic and I hope to be working on it more in the future.
TASMIN KIMOTO:
I think I'm going to exercise my moderator privilege to ask you a question. I also do work in a critical phenomenology and Fanon is a really key touchstone for that. That kind of work. I have a couple of questions in that sort of vein. So the first one, so you started the third section by saying "I have these three strands in this thinking and I am trying to think through the connections." I wanted to tune in to that for a second. I don't want to think not necessarily with the discussion of wilfulness, so much as where I think she and Fanon really meet is on the question of historicity and the need for… This follows on Benjamin's question as well, the need for a counter history study and the development of space, specialisation, speciality and if you hear Fanon's discussion of the epidermal schema and Orientalism. I think there is a link there, if we had a correction thinking about volition, something that especially historically constituted through this critical analysis debility. In a way that I think allows for not kind of, either degrading or evaluating the condition, people acting under these kinds of circumstances. Making claims about their bodies etc. Doing that in a critical move of getting beyond the sort of their experience of the subject. So I wonder if that is a different tactic, not the wilful subject, but the language of Orientalism in orientation from that.
EMILY R DOUGLAS:
Yeah, I think. I think, one of the things that I am wanting to do with this project is kind of, people talk about the body schema and the visual epidemic schema of Fanon and I love it and then I am like "what are the other levels of things related to this? What is going on in the body and in the space that is motivating these changes? Or motivating these differences in physiological experience?" I think one of the things that I really take from Ahmed in this is it is like she is talking about the will, but are not assuming the will, kind of thing. In my head I have been thinking about it as kind of reading sideways to the will.
I do think, that there are lots of, now I am like, sideways, that is also like an orientation. I think there are lots of really nice places to go. I wonder how the discussion of orientation… Ties in with the discussion about, "is movement good? Is far movement good? It's fluid movement good?) What if you have certain kinds of orientations, your way of moving along that line is different. Yeah, I do not know, really good. Thank you so much, for your question.
TASMIN KIMOTO:
Yeah, absolutely. I think there is so much in here and in your presentation, it is a very rich project. I will jump to a question from the audience and then we will see if I have time to interject my own again. Jonathan Wolff asks, is the argument building on Fanon that colonial oppression both creates and makes use of volition? Is this a vicious circle?
EMILY R DOUGLAS:
Overall I would say yes. Yeah, I do think who are the -- Jasbir Puar draws on the production of debility that may or may not stand up to people in the same way, whereas I think the users definitely do. I think in a way it's like colonial systems are producing a thing that will ensure the maintenance of their ongoing existence. At the same time as a sort of finding ways to manage these populations. So the preconditions are there for them to draw on all the way through. I guess if this is a vicious circle, how do we get out of it? I think that, I really think this is very important and central to a lot of the work and colonisation. I wonder if it would also require undoing a broker project. -- Bigger project. I'm not sure, my answering the question?
JONATHAN WOLFF:
It's good, it seems to be this is like ideology might function for example. So systems create myths about themselves which are in some ways bad for the people that hold those myths, but at the same time help cement the power. So I think some of the effects of trauma for example that come out in physical and mental ways in colonised subjects make them weaker and less able to oppose the system. It just felt to me, it's not something I've thought about before but it appears to me as if this is almost a physical analogue of ideology.
EMILY R DOUGLAS:
Yeah, and it's one of the things that I didn't talk about from Jasbir Puar, she notes that once one is debilitated or disabled there are two ways in which you are taken up. Either you are taken up as an object of care, which is like yeah, you are disabled, sick, you are recognised, we know these certain things are necessary. She uses a few different terms, you are called degraded objects, useless objects, whereas the debilitation that is happening in one's body is also denied to be real, it's said to be psychosomatic as in the case of the North African syndrome. So it's sort of a double blow there. TAMSIN KIMOTO: next question comes from Sue, thank you Emily, would you be able to say a bit more about the continuities and divergences with respect to some of the different forms of muscular tensions you have described. For example, agitation with the psychiatric session -- setting versus torsions and spasms, and how those might impact concepts like wilfulness in different ways.
EMILY R DOUGLAS:
Thank you Suze. One of the things that I'm trying to do here, inspired in some ways by Chen, is following this. Following this thread of agitation. So I see whereas a dystonia or torsion spasm is sort of like very specific and a diagnostic descriptor, I see agitation as this way of being able to talk of different experiences of debility at once. And I think that there is a vagueness already present in the notion of agitation, so that when agitation even when it appears in the psychiatric hospital, whether it is a lot of movement or whether it is very little movement, or whether it is verbal agitation or whether it's kind of ringing one's hands, that there is already a slide going on here. At least in the eyes of a lot. Yeah, I think one of the things I like about it as well is that it is therefore able to bridge what we might say are very different experiences of disability, from one another. Yeah, I don't know if that helps, I lost the end of the question.
TAMSIN KIMOTO:
How might that index wilfulness in different ways.
EMILY R DOUGLAS:
Oh yeah, I think it's I think what some of the some of the things we think of as agitation I definitely thought of are more of them thought of as wilful or less? Yes, but at the same time I think to some extent the vision of the agitated patient is like there is still something external affecting them, and if we can stop this then we can stop the agitation. Which would see the patient as this kind of receptive, helpless flesh suit. So I'm interested in that, trying to map. Thank you Suze.
TAMSIN KIMOTO:
I have more questions. I have two questions that are going in very different directions, but I might ask them both at the same time. To see what you think of them. So my first thought is that one of the things that I appreciate about Fanon's sort of philosophical psychiatric analysis of capitalism modernity is that it's always bidirectional. It's always an analysis of both the coloniser and colonised. And I wonder how that fits into this sort of critical phenomenology of debility you are giving us. With Fanon as the figure, how do we think of this by directionality? This bifurcated, interconnected analysis, that is so I think central and in many ways unique to the project. And then my second question, it's what one that I myself have been wrestling with quite a lot, it's inspired by the work of a colleague of mine, Axel Carreras, Karera
's reading of Fanon and phenomenology really objectively suggests that those of us in the field of critical phenomenology who take Fanon as our starting point are misunderstanding the project if we are thinking it's phenomenological. Because of the way he disintegrates notions of subjectivity or of humanity, the way it's a pacifist reading of Fanon. It is central implicitly to the work we are doing. I wonder how we think about that as we are taking up Fanon as a phenomenal just.
EMILY R DOUGLAS:
Those are both really good questions. I will say something briefly about both, if I have the chance. The first one, working on this chapter and visiting all these things, there is less in the recently published psychiatric insight in the wretched of the earth he has all these descriptions of colonial soldiers and torturers, like the daughter of a prominent white businessman, and how they also come to see him. With different sorts of problems, disorders, than the Algerians and Tunisians that he is mostly treating. And yeah, I think it is I wonder if it backward modifies the framework, do we need something in Jasbir Puar's framework for the non-debilitated when the others are being debilitated? Is it like a mere side effect, or is it built in somehow to the process? That there will also be these harms, in some sense. On the other side. In the chapter I have a note that says I'm not going to talk about these here, but I think it's worth talking about the here and the elsewhere that I mentioned, and how those function. On the second thing, I read a little bit of Karera
to work. We can say Fanon was on doing phenomenology and I'm still using him phenomenologically. I was really inspired by one of the authors I read for this chapter, who writes about Fanon and black power. One of the things he does is he is resoundingly unfaithful to Fanon in his writing, he doesn't actually care about getting right what Fanon said, what he cares about is how we can use what Fanon said, for the project. So I think the short answer is something like that, but the long answer is I don't know!
TAMSIN KIMOTO:
That's where I end up as well! And I think that is our session, so that we can give time for a break between presentations. Thank you so much Emily for a wonderful presentation.
EMILY R DOUGLAS:
Thank you so much everyone.
JONATHAN WOLFF:
Thank you both, Emily and Tamsin, for a really great session. Continuing in the quality and interests of all the presentations we've had so far. I'm sure Shelley will join me in that. OK, so we are going to take a break now, we will come back with the next session at five minutes past the hour. So Townson, Emily, you can turn off your cameras. Let us hope that Tommy and Jonathan appear. Jonathan I see. Hi Jonathan.
JONATHAN:
Hi.
JONATHAN WOLFF:
I don't see Shelley at the moment.
SHELLEY TREMAIN:
I'm here. I have my lights turned off.
JONATHAN WOLFF:
Meditating. Have you heard from Tommy?
SHELLEY TREMAIN:
No, but I can email him and ask him what's going on.
JONATHAN WOLFF:
I don't see him in the attendees. Jonathan, you know the drill, having been on the other side. So Melinda is there, as well. Melinda, I've seen your name so often in the chat, and on the Q&A.
MELINDA HALL:
Hi!
JONATHAN WOLFF:
Nice to hear your voice. So you are on after the break, aren't you?
MELINDA HALL:
Yes. I keep getting a little nervous, I've calculated it all incorrectly, I've done Eastern time. But I expect to go on at 1230 Eastern, which is 530, no, is that right? 1230 Eastern, yes.
JONATHAN WOLFF:
Let's see… So we've got you on the very last session. 5:30 PM UK.
MELINDA HALL:
Perfect, thank you. And I've just been popping onto test everything, I'm on the attendee link right now which shows me as a panellist, I assume if I want to share my screen am going to have to use my panellist link.
JONATHAN WOLFF:
We've got you as a panellist here, maybe Jamie has promoted you.
SPEAKER:
I think maybe your login has signed you in.
MELINDA HALL:
OK, great.
SPEAKER:
So in theory you could share right now if you wanted to. Not quite ready for prime time over here, here is my video, let me see if I can share my screen. I do not even have anything to share at the moment. I'm on my phone. I will try sharing right before my panel.
JONATHAN WOLFF:
I am sure that will be fine. You are not under time pressure because you are the last one.
MELINDA C HALL:
Great, that sounds wonderful.
SPEAKER:
I will just email Tommy.
SHELLEY L TREMAIN:
I just emailed Tommy, hopefully he will see my email soon.
JONATHAN WOLFF:
Well, I hope he arrives, I do not think we have a plan B for a missing speaker. I'm sure we can do something.
SHELLEY L TREMAIN:
We do not have a plan B, because things have gone so smoothly (Laughs).
SPEAKER:
Feel free to put that in the chat to me.
SHELLEY L TREMAIN:
He just e-mailed me. I am going to be the email. He says he is trying to use the link but he is having problems.
SPEAKER:
I will give him a call.
JONATHAN WOLFF:
Shelley, can you ask him if this is the right phone number for him. That might be his office number.
SPEAKER:
Tommy is here.
JONATHAN WOLFF:
OK, so Tommy, I can see your name and a black square. You are now. Full service.
TOMMY J CURRY:
Sorry about that. I was clicking the link and it was not taking me through.
JONATHAN WOLFF:
We have that with Michelle earlier. It is probably a mistake somehow. Delighted you are here and you are here just in time. Perfect.
TOMMY J CURRY:
May I show my screen?
JONATHAN WOLFF:
You can, if you would like to try that now. Excellent. Can everyone see that?
JONATHAN WOLFF:
Yes, probably go through a slide or 2 to make sure it is moving properly.
SPEAKER:
Are you happy to open the slideshow mode is back
TOMMY J CURRY:
I'm happy to do so.
JONATHAN WOLFF:
Well, we, so just before we begin this session, I just want to remind everyone that we are going to have a social event at the end of the session. End of the day today. After Melinda, if you want to stay with us. What we want to do is put people into smaller breakout groups, so you can have an informal and continued discussion around yourselves. A little bit of network discussion. It is completely optional, entirely up to you. We will keep the links open as 30 minutes, 45 minutes. No pressure, but if you would like to use that opportunity, you may later on. I will see some of you later then in person on camera. We will send around details to everyone one way or another for that. OK, so let me head over to Jonathan as chair of the session.
JONATHAN FLOWERS:
Thank you, our next presenter is Dr Tommy J Curry, he is a professor of philosophy and personal chair of Afrikaner philosophy and black male studies at the University of Nuremberg. His Curry has earned him numerous awards including the analogue award in 2017. An American book award in 2018 and most recently, the Josiah Royce prize for American idealist thought for his book on another white man's burden. The row quest for philosophy of racial empire. The talk is titled "he is not worth it, the deleterious character of the disabled black male body"
TOMMY J CURRY:
This has been looking at how we characterise the disabled black male body and black male studies. When we look at the literature on the disabled black male body, we see that this is largely an under researched area of thought and reflection. Most of our arguments about disability, overwhelmingly focus on stigma and in fact so much so, that we do not apparently have a framework to really understand and engage questions of blackmail disability in relationship to the driving concepts of blackness, maleness and death that we find to dominate other engagements. This was explored in 2017 by me, in an essay called "this negro is broken. I was interested in how the blackmail body is situated in the kind of misandric agression, the murder and lethal violence and aggression that we see expressed towards black males more generally. In literature, there were varying resources, because the notion of able body notes into a polite discrimination in any quality, invisibility, distortion. There wasn't a way to articulate why disabled black men are still experienced as the same kind of positions and murders, rage and violence by police and others throughout society. For many people, it is sufficient to say that black men are simply feared. That disabled black men I feared as well, a few different ways. That doesn't do the same kind of word that is necessary to explain concepts like sexual vulnerability, which I will talk about in the minutes was the end of the presentation. The expression of violence, towards disabled black men, despite the fact that they cannot be physical threats. The general disposition of erasure, where even in our concepts and thoughts, we do not see black men as having a fundamental subject position by which we theorise. So when we look at previous research, that articulate black disability. Usually it does so from the sole view of experience, or being perceived as by others as whiteness was up something that is here is the work of Chris Bale, especially in the essay about doing representational detective work. He is making the claim that we need to look at how other modernisations, sizes etc. represent bodies in a way that they are lesser than other bodies. What I am pushing however is a different lens of perspective. I want to ask how do we deal with the problem of abnormality and what I take to be more abnormal. 2017, I argued that to be nonwhite is to be abnormal. Our revolutionary behind and the phylogenetic order of human development. Those who are raised have historically been constructed as degenerate, inferior, nonhuman opposite to the rational prototype of the human, superior, abled bodied human. As an outgrowth of 19th-century eugenics, degeneration became a compelling racial metaphor such that the colonised races were assumed to be intrinsically degenerate, and as a result can never be improved." Degeneracy suggested biological weakness in disease, often translating into attribution of diminished cognitive and racial capacities of nonwhite populations." I take this to be a base, or a grounding, so to speak of how we theorise the disabled black male body. So when we are talking about racism and occasion, we do not start with some relation framework. Most of our three suggest that when we talk about blackness, or womanhood, or clearness etc. These things are taken away from some sort of body. I'm suggesting that when we fixate on the mill body, doesn't have those resources of humanity recognition. It requires a different way of articulating the disability. It becomes the instrument used to identify biological efficiency which is thought to show deficiency and the deformity of the body as a reflection of what is supposed as a cause of the mind. The distortion of the mind suggests savagery is generously of the body. This is contrary to represent short lenses and theory. The introduction of the black men of the rest of his life and not arrested by disability. I have showed with the murder of one man in my first article, some conversations I've had with their Black Disability Network. Disability operates within the nexus of death. In the more normative cases, the presumption of able-bodied nose is an obstacle to recognition for the white mind. For the black body, particularly the black male body however, there is a two continuation of materialist Envoy is that Berry all black men, which is continued. It is a different continuing annuity in the flesh. The presumption of additional disadvantage founded Bell's work in 2006 and 2011 as well as various intersectional interpretations of marginal identities. Prisym a casual relationship between how one identifies and how one is disadvantage pedigrees that do not possess such identifications. I think this is wrongheaded. We are looking at kinds of their vulnerabilities, the kinds of marginalisation that enabled disabled men face. We find much more continuity in their relationship to condition with other groups of black men, life expectancy, fear, hyper- personality and character traits. These kinds of stigmas have to be filled in as the basis of the subject that we are talking about. Suggesting that if we start on the basis of humanity, that is ultimately wrongheaded. So then how do we understand this relationship and try and point to black maleness and disposability. The first thing is that we have to understand that the conditions by which black men exist, especially in the United States, are circumscribed. By anti black misandry. Some people say, what is timing? So anti black misandry is accumulative assertion of black inferiority due to anti-psychology are black, hyper personality trait, like hypersexuality or hyper- masculinity. Which rationalise a realisation, phobics and sanctioning blackmail life. These ideas are part of the group-based racial consciousness white America and part of the social fabric and mythology of racism. In other words, we are all exposed to the notions of blackmail deviance in danger of. The stereotypes of black males are held by whites and blacks, white men, white women, other ethnic groups, or black women. Often we are identifying here is how the hatred of black men is hidden by appeals to safety, stability, and democratic order. Because he, the phantasm of the boogie man in America is thought to be a threat to all that is good, white and woman. I'm suggesting that black males who are disabled, do not enter the world and do not experiences. The question I'm asking, part of the character is what is the relationship to disability to the continuity of these kinds of stereotypes. In forms of violence. When we look at Blackman again, we are not looking at subjects that have recognition, or civility as part of the package of their identity. When we look at different arguments, specifically social dominance theory, we see that the way that black men are out and formulated is that they are constructed as being at war. With a dominant group. That means that racism operates and creates subjects that are fundamentally separate from the notions of humanity, that are already outside of the moral communities that we identify as being synonymous with civil society. Arbitrary sex discrimination, the same patriarchal white a minister societies operate as a form of discrimination that is really a form of intersectional composition, perpetrated by males. Arbitrary set discrimination it can also be viewed as a form of low-level war for directed against, it supports a hypothesis. Taken this as the basis for how we have social interaction in the United States and society, this means the disabled black men fit within the notions of groups, or individuals that are destructive and in opposition to White's ability. The black nobody, then contrary to what Bell suggests, does not operate simply as being a disadvantaged kind, but a dangerous kind. A disabled dangerous kind. A monstrosity. This is what we see, not only in the kinds of violence that we see with Mick -- Mr McDowell and others. Not only perceiving how these bodies are tormented in society, but what they have no resources that actually deliver humanitarian recognition. I would like to lead with a few examples. The first is Mr Michael Hickson, who was left to die. This example speaks to the absence of humanity, blackmail lesson disability. Mr Hickson had pneumonia in both lungs, urinary tract infection and sepsis, a dangerous immune response leading to multisystem organ failure. He needed a ventilator to help and continue breathing, but the hospital felt further intervention for the disabled man was futile. A doctor explained to the family there was little hope Hickson would survive or regain quality of life. The story became viral a few months ago, there was a question of whether or not this was because he was a blackmail and presumed to be dangerous. Were eliminating him was actually a benefit to society, or if it was a question of disability. How disabled peoples are constantly ignored, dehumanised et cetera. If we take seriously the idea that there is an absence of humanity from blackmail must and suggesting that disability acts within that, disability is not an addition to how they are rationalised as monstrosities, savage et cetera. The question we have to ask ourselves when we are talking about the black male body is how do we fit within those coordinates? What is it about disability that doesn't necessarily creating new relationship to it, but what magnifies or creates different pathways. We saw the same thing with the shooting of Jeremy McDonnell. A disabled black man, asking for help, made a 911 call, was in distress, the police perceive them as a threat and of course killed him. In 2017, when I reflected upon this, I argued that this was probably a problem with how we can't see disability as a category for the blackmail. Because the black male has so much predetermined savagery and valour – not violence there is no way to recognise disability because of what he occupies. The officers rationalise to them as a threat, a sub- agenda correct white light. Despite his confinement to a wheelchair he was denied vulnerability, he was denied victimhood, he was denied consideration as a human being in need of help. To correct such philosophical conceptualisations, there must be a focus on the actual facts disability has on black men and boys. If black males are to be overdetermined by the fear inspired by characters of the society then there must be philosophical interventions that convey the difference between the delusions of the white mind and the lived reality. Understanding the relationship between violence and the blackmail body helps to clarify exactly what is denied to the disabled black male. If we already assume there is this other ring, though to what extent does disability take away? Is there a magnification where the body acts as a privilege? An able-bodied black man has been attributed to criminal, deviant or races. If we have a reading of to Kill a Mockingbird it doesn't. Disability doesn't operate simply as an intersectional category that increases disadvantage, it may in fact contribute to a different pathway of disadvantage. We have now done is theorise disability with the black male body and the supposition of violence, for the basis of theorisation. We see tons of different forms of historical violence, on disabled black males which presuppose able-bodied nurse, precisely because the racial stereotype of the rapist requires an able-bodied male to do so. These are all constructions in the white mind, not facts about the body itself. So to disentangle the way that disability actually impacts on the physical body of black men and boys requires us to take a very different trajectory. A different trajectory of how we are trying to line the concept up. Everything disability takes away from humanity, but the humanity of black men are already absent and construed as a threat, then there is in any work for the category of disability to do. I'm suggesting there is, because we have the experience of black men to draw on, but we have philosophical questioning, our attempt to understand the relationship that that disability has to the death subjectivity we have in the black male body. I introduce John Howard, a white man who raped a mentally disabled black boy in an Idaho locker room. This is what I mean about the disabled black male body on certain into interpretations. How it was not convicted of sexual violence or assault. In fact, in the case itself what happened was so sexually violent that the community launched a protest to give sexual violence added to the prosecution for the victim. Black male teen was mentally disabled, Howard held the boy down in the locker room and shut the coathanger up his rectum, it was then kicked into his rectum even deeper. What's interesting was that in the court the judge actually said we are not going to try the perpetrator for sexual violence. This is despite the testimony of the victim, actually describing how he felt during the attack, saying "It was a pain I had never felt that took over my body, I screamed but afterwards I kept it to myself." Even disabled black men don't get the kind of recognition as victims of sexual violence and rape despite the disability to abled bodied whites. Think about this relationship, in a world where black men can't claim they are victim of rape because they are historically represented by the notion of rapists, and disability becomes a vulnerability to the able-bodied nurse of multiple white men that have racial animus driving them, how do we operate with creating meanings for the disabled black male victim who is victimised by the racial animus of the group, who is sexually victimised by the notions of groups of white men? How do we create meaning for that? The judge refused to acknowledge it was a crime of sexual violence, the judge refused to acknowledge the black victim was a victim of gang raped by white men. We are not just trying to claim something is being possible, we are not trying to say recognise this was victimisation and sexual violence, but there is a way of being the vulnerability of being a black male makes some of those categories not possible. So the argument I'm making in this paper, it's that disability for black men has been theorised very much from an intersectional feminist lens. Marginalised identities lead to certain forms of disadvantage are that we should take seriously and are ultimately based on how one perceives us. What I'm suggesting is that we look at black men the fact that there is an acuity there with negativity, criminality and violence, means there aren't any resources for the subject that gives humanity and recognition. So disability on that body simply leads to more brutalisation and not a recognised ocean or dehumanisation, rather than a possibility of actually being recognised as a victim or incapable porn. Said differently, because racism against black men requires a kind of super humanness that super humanism carries with it an essential notion of able-bodied nurse, and able-bodied nurse overturns any sense of nobility of disability that could ever make someone recognise the black male subject as being different from the stereotypes and the dangerous notions they harbour in mind. Thank you.
JONATHAN FLOWERS:
Thank you Tommy. Right now we don't actually have any questions. But I actually do have one that emerged as you are concluding your talk. One of your argument is was the perception of the black male body as superhuman was overturned by these racist narratives, obscure as disability. I want to think about this in an institutional context, wherein the difficulty for black male students and students in general to obtain disability accommodations can be grounded in the ways in which white institutional apparatus I do not view the blackbody as possessing a disability by virtue of the disability being manifest through racial logic. Is this within the ambit of what you're talking about?
TOMMY J CURRY:
Absolutely. I would just add that when you are talking about the black male body, the kind of negativity we have seen in the victimisation as well as correct instructions means it is not only not registered but it is contoured into a figment of danger. So vulnerability becomes an impossibility. We've operated on the notion that disability comes with certain stigmas, that it abrupt or is a barrier to some forms of humanity. What ends up happening with the black male body is because that body doesn't have the resources of humanity our disability operates to accelerate and emphasise certain aspects of caricature, be it violence, be it mental instability, be it savagery. So I think white institutions and white individuals leave off a caricature of the black male body and disability simply operates within that schema. So marginalisation doesn't really affect something that is already abnormal. That's what I said with a second slide that was about abnormal. Tend to think that if you are male and then disabled that creates a certain type of experience or disadvantage. If you are female and this is -- and disabled, that creates two kinds of disadvantages. If you don't have a subject of humanity, what does the deleterious category due to that subject, the subject that is not taking out anything away from? But functioning within the dynamics of. That's the question and try to answer.
JONATHAN FLOWERS:
Thank you. Joe Wolf actually has a question, I will let him speak to it.
JONATHAN WOLFF:
I really fascinating talk, thank you Johnny. My question concerns a generalisation and differentiation. And whether it is really possible to talk about the disabled black male body in that some men are b, some men are frail. Could there be a difference in the way in which a threat appears because of the type of person and the type of disability? I was also wondering whether your analysis is restricted only to physical disability. What has been called minority minds, different types of cognitive limitation or mental disability. Whether your analysis also extends in those ways. So I'm wondering if we need more differentiation between different categories, for the complete analysis.
TOMMY J CURRY:
Well the thing is when you are looking at black males, there's aware the an assumption of cognitive inefficiency. It's been asserted that black males are generally less intelligent than their female counterparts. It's always been part of the racist caricature. So when mental disabilities introduced, and remember that the young man who was attacked in Idaho by the white man was mentally disabled are not physically disabled. There is still a way that the black male body is allowed to -- is not allowed to express vulnerability. In the example as you phrased it, there is a need for nuance and category, because the physical disability operates in a certain way, as certain types of caricatures and stereotypes, mental disability acts in a certain way, it has certain features and stereotypes et cetera. What I suggest is that when you take any one of those two categories and put it on black male body the black male body already contains the stereotypes that we think are operating, that have relationships to the categories we are speaking to. What I'm asking is, in cases of mental instability or deficiency, how does that operate on a black male who is already thought to be deficient? We see it leads to exactly the same sorts of stereotypes. I'm not questioning whether or not there is a disability, and questioning whether or not the black male body can have a disability perceived given the negative views in the first place.
JONATHAN FLOWERS:
We have a question from Sophia. She asks, do you think there are parallels to be drawn between how black men are perceived, and Foucault's writing and how mad people have been written about as physically superhuman. Claims that madmen can't be hurt by heat or cold for instance, they won't suffer hypothermia in cold buildings with little clothing, like normal people well.
TOMMY J CURRY:
There is a relationship between madness. When you are talking about black men in these kinds of stereotypes, it tends to be about how close to nature they are. Whether they have certain ranges of temperament. It is interesting, because if you're looking at the history of sexuality, there is this very old 1903, 1910 idea that the sexuality of black men operates very much like animals. So whereas humans can have sex all year round, black men have sex because it is seasonal, they make like animals. They are like humans in that regard. So yes, I think the constructions that we see both of madness and sanity around savagery and civilisation, operate very specifically on the Blackwell body. Given that -- the blackmail body. We have to look at what these categories do, not on the norm that if we have black man, white female, how would they be disadvantaged? Rather than in conditions of dehumanisation, how to categories that we take to be representative disadvantage further exemplify, or magnify the kinds of things that we think are inhumane. There is no reason that Mr McDowell should have been shot appealing for help in a wheelchair. There is no reason that a black teenager should have been gang raped by a bunch of white men. There is no reason with the other victim, get no attention, or analysis is a victim of rape. What is it about that body that is stopping us from taking disability and those power dynamics between people seriously stop what about that lack of humanity prevents many kinds of emotive or philosophical access to recognition of humanity and compassion.
JONATHAN FLOWERS:
Thank you. Now he asks I was wondering if your analysis contextualises milk winners, especially with regard to HIV and AIDS -- queerness.
TOMMY J CURRY:
I do quite a lot on HIV positive like men. In both cases whether they be straight or gay, the stigma is carried alongside HIV-positive diagnosis. That is not only about how societal stigmas operates, "these men are promiscuous, these black men are dangerous etc." It also works with the level of access to healthcare, stigmas about whether certain bodies and certain kinds of innovations and that whether they deserve treatment. I think one of the issues with mixer Hickson is to show the acuity that that lack of quality of life that is assumed by the institution. When queer black men are operating in this Nexis, they are traditionally thought to be without meaning, absence of human life and without bounds. We can see how that kind of being operates within the same dynamics. I guess what I was talk about in my work is how do we adjust the policy? I do not think categories and ideas do the kind of weather we need. How do we adjust the policy, the kinds of disadvantages and prejudice that we see throughout the medical establishment. Until we get to the point where we recognise that blackmail nurse. We are just trying to stack categories among categories, assuming that it is going to be part of it. I be great we can address this issue with that blackmail." We did the same thing, I'm suggesting that no matter what we do any blackmail subject is going to be negated. When you start looking at all the outcomes, be they straight, disabled or not. You are still going to see it compared to every other group. There has to be something that is pulling those factors, those outcomes down.
JONATHAN FLOWERS:
Thank you, Tommy. "How your project interacts with different analysis of Simon Tony's oppression within the disabled People's movement. Particularly Stuart and Bacon who read the speci generalised experiences of disability structured by the social roles prescribed by abrasive societies and groups. Particularly through discrimination and state services. For some"
TOMMY J CURRY:
I think this is where my work was slightly different in scheme. There is not a denial that there are notable levels of disadvantage going on. What I would suggest is if you take all the disadvantaged groups, there seems to be downward trends associated with black men in other racialised men in American society. If I look at income differentials, you are going to see it even more so than women, you don't have to look at incarceration of employment. Look at incarceration, downward spiral for black men. Most men in America view promiscuity and violence as being a blackmail characteristic. It is not so much how do we have Simon Tony's interactions between categories of subjugated identities, but rather why the most harsh and lethal forms of violence seem to accumulate around racialised black men. I can accept that there is a descriptive phenomenon, taking it into account. When you look at some other work of Leroy Baugh who was an activist, in comparison to some of the work on black male studies. My question is a great what is it about the black male body that leads to the most gruesome and legal forms of violence?" What role do then like categories like disability have, or what role does it play within that kind of dynamic.
JONATHAN FLOWERS:
Kathleen Lennon asks, "it seems to me to be an important corrective to some understandings of intersection allergy. Is it repeated that the picture of the way in which multiple categories modify each other, we often find in literature needs to take note of the fact that certain categories of trump other possibilities, blocking such modifications."
TOMMY J CURRY:
I do not know the category trumps, but it is a question of grounding. Subject seem to have certain possibilities. If I may, when white people enter into the zones of caricature. In my work caricature has a very specific name, it means that which is defined outside. When it gets to caricature, those emotions are expressed as dehumanisation. When we think about white people, we assume humanity, then the things that move them outside of humanity. Beau Milliken black people, there is already the condition of dehumanisation there. When you look at the Kaiser propaganda for the last 200 years concerning the human 4 dehumanisation. It usually attacks different groups. If you look at Nazi literature, you going to find horrible notions of Jewish men as rapiers, some suggest they are effeminate, so much so they menstruate, that they carry syphilis. The kinds of racial stereotypes using the last 200 years. These kinds of things are understood through the interaction of category. That we have begun thinking about this, not with the sociological empirical condition of the bodies that form black men, black women etc. These categories as a shortcut to talk about how some things and some meanings are formed and created, or as you suggest could trump others. What I am saying, is if we look at the body from the actual history of the group and start with the empirical, historical facts. Of what this group has been defined as. Then categories do not seem to be able to do the kind of work that into sexuality premises. If you look at black men. As a group historically, what they actually exist as in the notice states and what they have done for the last several hundred years. If you use being a male to be privilege, then you have to explain why then that group keeps having downward trends compared to the black female counterparts. We cannot do that, so we just ignore that is happening. What I mean by that, if you look at black men's rates of victimisation, if you look at sexual victimisation, sexual contact. It is slightly higher than black women's and all other groups of women in the United States. How do we look at that, we do not associate sexual vulnerability? What I'm trying to show in my presentation, given what happened to the young men in Idaho, given what happened to DJ, given what has happened to black men throughout history. Social vulnerability is part of the male category, which you cannot get to in the intersection analysis, you have to go outside, reason history and then say "oh, part of the male category is sexual probability." I am saying if we start with the historical group-based phenomenon of blackmail, it would be dehumanisation in the body. The group itself is already showing that blackmail -- being a blackmail, the homoeroticism that allows police to eroticised guns in a black Mercedes. I'm arguing that the -- black men and their anuses. We supplement it by saying let's go outside of the theory in the category. What we have to do is look at the circumstances and the abnormalities that have been historically present in the group that we are studying and then use that as the basis of saying, "how then do categories like disability, poverty etc. further the dynamics of what we have already observed."
JONATHAN FLOWERS:
Julie ask, would you be willing to say something about how you might want to explain for instance that all of the black men who were killed in prisons in New York State last year were also disabled.
TOMMY J CURRY:
Yeah, I think we're gonna look at disaggregation. I am sorry, I'm just covering in that way. If we look at what kind of violence is being done towards them, other ready stereotypes and then compare that to what we see generally across the nation. So we know visitors, it is really good question, but I do not know if I would say disability would be a causal relationship. Because, when you look at the juvenile justice system, you see high prevalences of black boys sexually assaulted by staff for prisons, right? That is despite mental capacity. I think what we have to do is be very careful about whether or not we suggest that a certain category has a causal relationship to the phenomenon. It just may be the case that the people that were killed happen to be disabled, either physically or mentally. I want to say that, because I do not want to negate that disability does have a role in dynamics of death and exploitation that we see. I'm not arguing that there is no offence, I'm simply saying that the effects are going to be indeterminate, they are not going to necessarily be predictable and how we operate within them and analyse them is going to require empirical case study, rather than starting with a category that says the Prince of X Way.
JONATHAN FLOWERS:
If I might take moderator privilege and slide in here. Given the constraints on how people with disabilities transact with the world and to do so inside baseball, the way that black men learn to transact with the ward to avoid particular forms of police violence. Could it be the case that particular modes of disability restrict black man's capacity to adopt those habits, those behaviours and would allow them to avoid particular kinds of state sanctioned or police violence. This might provide some motive an account for what Julia 22.
TOMMY J CURRY:
The reason I hesitate, it is a question of which will you do it from. You would have to start with the jewelled population and then asked the question, which kinds of performances stop them from not being shot? There's a big study. (Laughs) that is big study. If you look at the victim perspective of the people that have been shot, you know that all the behaviours were ineffective. I guess, if we look at it that way, I think this year, we are almost at 200 Black men shot. We read at 185, 189 and one black woman shot. We just do not know. Because if a black man can walk across the street to be shot, our… We do not know which whistling the role the right behaviour is actually stopping the violence. I certainly think it is possible. There is a general death drive towards black men. They expect some of the highest rates, the highest rate of police violence, incarceration, hate crime and all of that. I guess my question would be, we just would not know if the disabled behaviour that was not able to be performed was causing a link to them being spread or not. It seems to be random. But I do think we have to take a note of the way that disability has a particular meaning and stigma by the people with power that want to impose the reason that this young man was raped with a coat hanger is because they saw his body as being vulnerable to a particular kind of violence. I think that is where we are going to have to go, because if we try to articulate disability on the black male body, on the black male body. We are going to run into so many contradictory case studies. Where it seems so random, because the black male body draws violets to it, we will not be able to produce a meaningful theory. What I am suggesting, I know contrary to Belle's thesis, instead of looking at the marginalisation of the idea he has. We have to look at the ways that they do marginalisation effect contributes to the already almost a full glass of negativity that the blackmail body carries with it. Understand that in terms of…
JONATHAN FLOWERS:
OK, interesting. There are two questions that have an economic theme. David Lawson asks, putting an economics of disability lens on, I wonder how you would understand class and disability and poverty as it pertains to black male oppression? This ties into Javier's question, he would like to know about how income or money possessed by a black person plays within the stereotypes of recognition of humanity.
TOMMY J CURRY:
Those are good questions. The data is somewhat split here, because you can be a middle-class black man that still triggers fight or flight responses in white men. Vulnerability theory says that no matter your class status white men generally will perceive you as being bigger and more aggressive. Then your white counterparts with the same kinds of class or educational background. We know that despite were black men stand on the economic ladder you are going to have a trend towards downward mobility. Which means that even if they start in the middle class because of job disclosure, stereotypes about danger, economic dissemination et cetera, they are going to tend to fall into the class below them. So class operates around certain formulations and notions of black maleness that are not independent of it. So me being a black male means even if I have a certain class status I'm still subject to certain this relation. There is work done with CEOs, blackmail CEOs still have to have baby faces and make jokes so people don't think they are dangerous. Race modifies the benefits that class has. I don't think that itself is new, but when you're talking about the kind of things that it has to modify for, like danger, the rape stereotype, the idea that black men are naturally more sexually auditory and misogynistic, these are the kinds of themes that don't seem to be affected by class. Class, if anything, seems to heighten that sensibility because it makes people think that black male is powerful. So doesn't deter the kind of nature, people think that happened to it. The first question however, the one about economics, and recognition. Did I get that right?
JONATHAN FLOWERS:
Yes, how you would understand yes.
TOMMY J CURRY:
So how I would understand poverty as being part of the play for disabled black men. Again, it's strange. We know that within the conglomerate of poor black men poor black men are generally homeless, more homeless, more unemployed than other groups of comparable stats. We know the same black men are particularly at risk from homelessness, unemployed et cetera. So it does in that case it up a magnifying effect. There is a cost to being disabled compare to other disabled groups, but that cost might be extremely marginal when you are looking at other poor able-bodied men in similar circumstances. I guess the notion of disability in that regard would be the possibility to remedy one situation, whether or not there would be more job discrimination, whether there would be more social stigma associated with that. And ultimately I think that's just a question of how you are going to break down the case study or whatever data. Again, this is part of the issue with philosophy, philosophy wants to make grandiose claims about how they operate. What I'm suggesting is we are giving causal effect to disability on bodies that are already experiencing the effect that is claimed to be the cause. So the kinds of discrimination, the kinds of disability, the dehumanisation that has been traditionally linked to the disabled body are already operating on the racialised male body, especially the poor male body. So it may be magnified, it may exacerbate it, but the content of that analysis is that the body is already there. So I don't know what the cause versus benefit of that claim would be, outside of justice aggregating disabled black men and seeing there is a difference in their experience with other poor able-bodied men.
JONATHAN FLOWERS:
OK, thank you Tommy. The next question we have is from Michael Brennan, if your analysis is confined to the USA or if it extends to Caribbean countries and African nations?
TOMMY J CURRY:
The case studies I have utilised mostly from the United States. The claims I make about black men apply to black men all over the diaspora. Particularly with regards to sexual violence, you see large rates of these cases, the new do in the United States. We know that disabled black boys are particularly at risk for sexual victimisation, they share that with their able-bodied male counterpart, but this seems at least in the United States and Africa, and a view of the Caribbean countries I went to said they have similar problems but they didn't have any data.
JONATHAN FLOWERS:
Thank you. So again, thank you Tommy for an enlightening presentation. And thank you for attending. I believe we have an extended break, so Joe, if you want to take it away.
JONATHAN WOLFF:
Thank you so much Jonathan and Tommy, a particularly wonderful talk and discussion. I can see things are still going on in the chat. So maybe we could take a look at that. So my thanks to both of you, and yes we have an extended break now. We have a little over 30 minutes. Shelley also is there to give her a pause for the session. What we will do now is turn off our microphones and cameras, and the panellists will come back around 20 minutes past the hour, just to check out some technical things. For those panellists that want to do that. And then we will start the next session dead on time at 30 minutes past the hour. Just to remind you all, we will have the social event, the breakout rooms at the end. And the details about that will be written into the chat in the next session. So Tony, thank you so much, and Jonathan, for sharing. See everyone in a little over 30 minutes. Thank you so much.
TOMMY J CURRY:
Thank you.
JONATHAN WOLFF:
So, Shelley, are you OK with that? We need to discuss anything now? Shall we take a break for 20 minutes?
SHELLEY L TREMAIN:
That sounds good to me. Thanks very much for your talk, Tommy, it was really interesting. Very provocative, and it was very nice to see you in person, face-to-face.
TOMMY J CURRY:
Finally, right?
SHELLEY L TREMAIN:
OK, I'm going to go off now.
JONATHAN WOLFF:
See you in a bit.
JONATHAN WOLFF:
Shelley, are you there?
SHELLEY L TREMAIN:
I am here.
JONATHAN WOLFF:
Excellent, have you heard from grace, or Catherine?
SHELLEY L TREMAIN:
No, I haven't.
JONATHAN WOLFF:
Jamie said he is just going to email them, because they may be having trouble with the links. We will see how we do.
SHELLEY L TREMAIN:
I will go unto, can you hear me? I am going to go onto Facebook which will give me an idea of whether they are online or not.
SPEAKER:
Hello, Catherine?
JONATHAN WOLFF:
Catherine, hi.
SHELLEY L TREMAIN:
Catherine is there… Grace as well. OK great.
JONATHAN WOLFF:
In good shape and we have five minutes, so nice to see you both and…
SHELLEY L TREMAIN:
I am going to go off again.
GRACE CEBRERO:
Thanks for having me.
JONATHAN WOLFF:
To have slight, would you like to try the slides out?
CATHERINE CLUNE-TAYLOR:
Yes, sure…
JONATHAN WOLFF:
I was reading the program upside down. Catherine is presenting.
CATHERINE CLUNE-TAYLOR:
Here we go, does that work.
JONATHAN WOLFF:
Can you move forward one slide. Brilliant. Great, you with this earlier, so you know how things are working.
GRACE CEBRERO:
I climbed the fence.
JONATHAN WOLFF:
Is removing, the microphone is getting further from your mouth. If you can just be aware.
GRACE CEBRERO:
I just noticed that when it was going in and out, which makes me suspect a short in one otherwise. I want to make sure that you can hear me, otherwise I am just going to take my headphones off.
KATIE TYNER:
We can hear you well.
JONATHAN WOLFF:
OK, all you need to do is do the introduction, Jamie will tell you in the chat when that is ready. You might remind people about the closed caption option at the bottom. They have heard it many times, but there may be a few people coming for the first time now and if you just tell them a little bit about that. Just to remind them that the questions go in the Q&A. Then, Katie will be monitoring the UEA -- Q&A. She will send you it via direct message in the chat, questions for you to read out. You will see them in the chat, because the direct messages are marked with red. Coming from KC. You will probably see other messages in the chat, because some people put their thanks and their replies and little other messages. The official questions are the ones that are coming from KT. If anything goes wrong, people can lose connection, so if it goes wrong you can look directly in the Q&A questions and if there are any that have not been answered, you can look there. That is a full-back and we recommend that you go to the chat and keep your eye on the chat.
GRACE CEBRERO:
I'm going to see if I can split my screen between the chat and the Q&A.
KATIE TYNER:
No. I was just going to say, the QA will just pop up as a bar you can move around your screen. There is no need to have that window open, because the chat in all of these is open on the right side of the computer.
GRACE CEBRERO:
I see, I do not have experience with the Q&A area.
JONATHAN WOLFF:
That is good, because we do not particularly want to looking at the Q&A. Only if it all falls apart. Go to the chat first, OK? We are almost, any questions from either of you before we get going. You know the timing we have got.
CATHERINE CLUNE-TAYLOR:
I have time to talk and generally speaking I am something of a fast talker, so I will try to slow down.
JONATHAN WOLFF:
If you would not mind, to be kind to the caption it is quite hard to keep up, particularly if there are technical words. I know it is very difficult to keep it in mind, I always get it wrong. So I cannot criticise anyone.
GRACE CEBRERO:
One question before we get going, I cannot believe I get to introduce you, I am so excited. One question is, as I introduce you, do I just push mute and stop video?
JONATHAN WOLFF:
You just press mute and Jamie will sort everything else out and all other instructions. You do not have any technical tasks to do at all, other than muting yourself. If you want, you can tickets of camera, if you want to do for the talk. That is probably the better thing to do. If you take yourself off. I'm going to go off coming out and meet myself and then Jamie will give us the queue to get started.
GRACE CEBRERO:
Too many papers! Welcome everyone, to what I believe is the penultimate session. Besides the social after all the sessions are over, we get to talk with each other and learn more from each other. I'm going to make introductions, first couple of logistical things. This event is being live caption, so you will be able to see the live captions if you click on the CC button at the bottom of your screen. If you have a mobile device I believe it's on the bottom as well. We are going to try to remember to talk a little bit slower. Which is a problem for me! So yell at me if you are the captioner and the captioner is not getting it right. I will slow down. This is a webinar format, so all matters of the audience are not going to have your cameras or microphones on. So if you have questions, please write them out in the Q&A. At the bottom of your screen, you see too little speech bubbles. Click on that, and to your questions in the Q&A, then at the end we will chat about it. And text about it if you want to. But please use the Q&A so it can be moderated. As chair, I need to make sure that the timing stays on cast. I don't know what time is, it's not real! So I have a big clock right in front of me to keep on task. Without further ado, I need to tell you who I am. My name is Grace Cebrero, I'm 1/3 year PhD student in philosophy at the University of Minnesota. And I'm a disabled philosopher. I have a brain tumour, which was as big as an apple, and in surgery they got most of it but I have a really cool fake skull on the half of my head. It presents a lot of fluid disabilities, cognitive, motor, speech. That's probably the most frustrating. And my hands just give away now and then. So I work on disability and social epistemology. And broadly, moral and political philosophy, with an eye to disabled people. And disability Justice, with feminist philosophy. I view feminist philosophy as philosophy for everyone. So it actually bothers me that I discovered that (inaudible) was sort of this other thing. It's a little sub- world of philosophy. So I'm excited that we are here, and our guest speaker is here, I am a huge fan. So I'm excited to introduce Catherine Clune-Taylor. She is a black feminist and studies scholar, she was born and raised in Toronto Ontario Canada, she is currently Assistant Professor in the Department of women's studies at San Diego State University. Catherine initially planned to go to medical school, receiving a bachelor of medical science in immunology and microbiology. From the University of Western Ontario. However, a chance encounter with feminist science scholars and biologists on the management of intersex conditions in children eventually led her to follow a different trajectory. After earning a PhD in philosophy at the University of Alberta with a dissertation studying the science and politics underlying the treatment of intersex children under the "Disorders of sex development" treatment model, Catherine had a postdoctoral research position in the program of gender and research studies at Princeton University from 2016 to 2019. She teaches intersex feminist cultures on gender, sex, technology, and science and technology to undergraduates. She has published articles on intersex management in Fane X the Journal of phenomenology and (inaudible). She is currently working on two projects, the first expands on her doctoral project examining the biopolitical management of sex and gender, within the 21st century. Focusing specifically on medical, bureaucratic, legal and political efforts. Including intersex management. To secure what she calls a cis gendered future, referring to an abstract trajectory across the lifespan where multiple variables remain incoherent alignment. The second project, the matter of black, life and death, begins from an understanding of Black Lives Matter as an Ansar eugenic movement. It undertakes the urgent political task of racialised disparities in health outcomes, and access to healthcare as well as other essentials for living such as freshwater. In the wake of slavery. In particular, Clune Taylor is looking at the ways market-based health insurance tied to employment as well as other racist angiogenic structures distribute life chances to black people in particular are shaping their lives and deaths in ways that are debilitating and disabling. In 2018/19 she served as president for the Society of women in philosophy. She is honoured to join the board of interact, an organisation supporting (inaudible) is that right? Intersex use. Of January 2020. So without further ado, I'm excited to hear this talk. Thank you.
CATHERINE CLUNE-TAYLOR:
Thank you so much for that lovely introduction. And thank you everyone so much for being here. I am thrilled to be here, to be joining you all across all these different time zones. I see a lot of people attending, it's wonderful to see you all virtually. This talk in particular feels really right right now. At the end of what has been for a lot of us the most difficult teaching time of our careers. It comes at the end of a very long and strange year. I'm going to start showing my slides here, and I will get on with it. I'm also going to try very hard to speak slowly. It's not something that I'm generally naturally inclined to do, but I'm going to try. First, a very brief introduction here. As I said, I'm honoured to be here, and I just want to talk about the kind of bringing together of this project. So Shelley reached out to me at the end of August beginning of September, of this year, to get my title and abstract for this conference. I put that abstracts together at a time which was coming at the end of my thinking that this felt like the end of my generations long hot summer. It was a period of time that had been marked in so many ways by the kind of emergence of this kind of racial consequences. But at that time I was also five months into isolating alone, in my one-bedroom apartment in San Diego, a place I had only lived one year. I wasn't quite into the period where I spent more time in isolation than not yet, though I am now. Like many black folks I was always does make also trying to make sense of the physical and emotional strain and the social and political worlds that had emerged following the murder of George Boyd. Further, I was at the beginning of a teaching term, in which I was anxiously trying to deliver courses online for the first time, as someone who felt very ill-equipped to do so. And also trying to figure out how to meet my patients -- students where they were. So many of my students were not only dealing with COVID-19, whether it was that they had it all family members had it, many of them were also on top of that working quite a bit. I have multiple students whose parents had lost their jobs due to COVID-19 or were on furlough during the pandemic. So they were out working in order to help support their families, in large part because they were the lowest risk person in their families. So it was clear to me that I was dealing with the stress of the pandemic, I was also dealing with the stress of being a person who was in particular a black woman. In the United States. Further, I felt like as a feminist science scholar with some background in microbiology, I felt like I had been uniquely trained for this moment in time. In both helpful and wonderful ways, but in also terrible ways. I felt like I had a good sense of what was going on, in certain ways I could be very helpful to friends and family. In terms of helping them navigate the sea of information out there, and misinformation. But I also had a keen sense of the long term and larger effects of what was going on. With regards to COVID-19. And there were times when I felt like I was Cassandra, kind of yelling into the abyss. So I give you all this back story to tell you that this is the time that Shelley asked me for my blurb and my title for this, and like many of us I was just grasping for different ideas or different concepts, or different ways that would help me make sense of the world that we were in. And the things that we were seeing. Especially because I was looking at all that, and also looking at the anti mask protests that were emerging as well, that were clearly right supremacist -- white supremacist in some form. I put together my talk for today and I had been drawn to during this time, I kept coming back to 2 point, or two quotes, two conceptualisations and one of those was the work of society that must be defended on the dual sociality of the state. When the Nazis and Nazi Germany are being discussed, he says the following "we have an absolutely racist state, an absolutely murderous state and an absolutely suicidal state. A racist state, a merger of state and a suicidal state. The three were necessarily superimposed and the result was of course both the final solution, or the attempt to eliminate, by eliminating the Jews, all other races in which Jews were both the symbol and the manifestation. And then telegram at 71, in which, in April 1945, Hitler gave the order to destroy the German people's own living conditions." I've been thinking about this and drawn to this quote in order to try to think through what I was seeing in terms of this white supremacist desire, or request to be put at certain types of risk. The second point that I kept coming back to and the one that I decided to choose for my talk today to ruminate on. Foucault and his discussion of the crisis, in the birth of the clinic. Where Foucault is talking about classical literary medicine to what we think of as critical medicine between the 17 and 1800. He discusses the role of the clinician, or of the health practitioner of classical medicine in the 1700s as attempting to deduce get insight into the true insight of an illness, disease. It would necessarily be mediated, or muddied by the fact of the patient. The actual physical body of the patient in a sense, mediated the disease and so the clinician is attempting here to in fact abstract the patient, remove the body, so that they can get a sense of what the illness is. This is a quote from The Birth of the Clinic where Foucault states "if one wishes to know the owners from which he is suffering, one must abstract the individual, with his particular qualities." So he can treat it accordingly. According to my memory, the crisis was positioned as this uniquely important and potentially revelatory event in the process of the disease and of its deductions. That is that the crisis was in this period of time in the progress of the disease, where, rather it was an event, a temporality, but an event where things could be seen clearly, things could be made clear. At least, this is how I remembered it. When the time came for me to put together this presentation, it turns out friends I was maybe wrong at the very least, I was wrong on the crisis bit, though not on the rest of it. That is when the time came for me to put this together, which of course was later than I had hoped. Because, the school term turned out to be wild and there was a lot of stress around the election and all of these other things. I got to reading, I returned to my copy of the Birth of the Clinic. There is no discussion of crisis in that way, at least not in that text. So it turns out I was wrong about what Foucault said about crisis, at least in this context. Although I am not sure that I am not really wrong. It could be that I did read someone else who spoke about this in this way, because I do have a very vivid memory of this. Honestly, I am not sure. All of this, however embarrassing this whole situation might be and I will say I also feel like it is pique 2025's. I also feel like -- it is pique 2020 vibes. I want to demonstrate it is very benign and privileged way. Some of the very phenomenon I want to highlight here today is the effect that the kind of presence that we are all living in has nurse in terms of our bodies, in terms of our capacities and in terms of our ability to function. I am going to say a little bit about function in a minute. That is, one of the things that I want to get out here today is the fact that we all often have certain understandings of what normal function means for us. When I say normal here, I am not talking about it in this normalising sense of the term, or in a biostatistical sense of the term. For example, as a neuro atypical person, what kind of normal cognitive function means for me is something that I recognise as something relatively different for other people. There is a sense of and I have a sense of my own normal, that is what constitute normal for me. In terms of my life, in terms of my cognitive function. I think most of us who have chronic illnesses, or ongoing health issues are very aware of how sensitive maintaining balance of our normal is. So one of the things I can say is my own unique normal in terms of my own cognitive function is something that, yes, might not be the same kind of normal that everybody else would identify, but it is something that I do have a sense of. I do have a sense of the various kinds of things that affect that's normal and effect subsequently my capacities were doing various things in the world, like giving tours, or doing research, or teaching. I can very clearly say that, that normal has not necessarily been available to me. Within the pandemic, in the same way. Right? I can say that, though as somebody who nevertheless is very privileged as a black woman in the US at this moment. Throughout the pandemic, I have not had to have the same concerns about am I going to be able to pay my bills, do I have a cheque coming in every month, am I going to lose my health insurance. So, even if there are a variety of larger kind of social and political issues and there is a very high amount of stress that I am feeling, that is particular in a lot of ways to my position as a black woman in the world. It is still pretty insignificant in some ways compared to many others who, like me are black women, black men, who are people of colour, I should say. One of the things, one of the mechanisms I am going to introduce here is that of weathering, or Alice static load. As a process, we are given the gradual wearing down of the system stresses that accumulate over time. This is the process by which this occurs is referred to as Alice stasis, "Allah stasis is a type of physiological regulation in which the internal stability of an organism is maintained while the organism deals with the challenge or crisis." We can think of this as a contrast to homeostasis, when for example the body is, maintaining internal stability during the regular ebb and flow of life. Being in Allostasis in high stress situations, when people are in critical overload, right? High rates of cortisol are going on at all times. We get this gradual wearing down of the body systems over time and this in itself can produce chronic illnesses and chronic health problems such as cardiovascular disease, diabetes and accelerated physiological
Black women have come to provide multiple examples of the results of Allostasis and weathering on the body. There are pretty good studies that show that in general, black women, physiologically age faster. Based on studies, looking at the length of the mitotic clock, comparing those to individuals actual chronological ages, we see that black women from the ages of 49 to 55 are biologically seven years older than white women within the same age group. So, this is all to say that our environment, that is political environment constitutes not only disability, but impairment as well. It actually serves to constitute the physiological health, or ill health of our bodies. Again, we do not need to index that to some sort of problematic totalising norm. But, I can still say that the environment has had an effect on what normal means for me, for each individual themselves. So, even if I am wrong about the way Foucault two crisis. The COVID- 19 pandemic is nonetheless a crisis and it has been revealing in a number of ways. What I would like to focus on here today, for the rest of my time is that the way, the kind of ways in which it has been revealing in terms of its eugenicist nature and function in the state as well as the body. We have seen quite clearly, particularly through discussions of racial disparities in health and health access. In the course of the COVID- 19 pandemic. The ways in which individuals are prematurely exposed to disability death and debilitation. We are highlighting or coming to see more clearly I would say the material conditions by which folks and particularly by black and disabled folks are let die. They are disproportionately exposed to death. Indeed, the ways in which risk, vulnerability, morbidity, disability, debilitation and mortality are socially constituted I really coming to the fore and so for the last few sides here I want to look at some of the specific ways that this might be happening. Structurally, physiologically, so at the level of the body and even in the context of care and so I am going to talk a little bit about the vaccines and some issues around those. So, first is looking at some disparities, I took the slide from Harvard University, where they are, this is actually using data from the research lab, APM, coming in with data from the CDC. This is adjusting COVID- 19 debts. There we go. One of the things that they point out here, we see the kind of death rates here are higher for black populace's -- versus indigenous. -- This only goes to August 18. We have seen such a significant rise of death within the last six weeks. There is, this data is a little bit outdated. Nonetheless, we see huge disparities here and so from this data that was handled at this time, at that point in time, you could say that if other populations were to have the same death rate as white individuals as of August 18, there should have been 19,800 more black people alive, 8000 more Latinos people, 16 indigenous people should still have been alive at that point, if we had the same death rate as white folks. The hospitalisation rates, we know the indigenous folks are hospitalised three times as much as white folks. Black and Hispanic folks are about seven times more likely as white folks. I should say that, all of this data really depends on where you are. How that has indexed your population. For example, from a study from October of this year, we found that in Louisiana, black folks made up 32% of the population, but 70% of deaths. Whereas, white Americans made up 62% of the population in Louisiana but account for 28% of COVID- 19 does. There is a variety of data which refers to racial disparities, but I am more interested in thinking about some of the reasons why we see this. First I would like to talk about the constitution of risk. Risk and vulnerability here. One of the things it is quite clear is that there are, there is a racialised and class privilege in terms of who gets to socially distance and one of the things I think is quite important to note is, I think a lot of people who have been speaking in this conference so far have talked specifically about care facilities. This is quite an ablest privilege as well. Who gets to socially distance, who has a kind of job to socially distance, or not. And how exposure, or limiting your ability to be exposed is itself a kind of social privilege. There are also these issues of economic and security, so people of colour were more likely to lose their jobs during the pandemic. Many of whom then have two decide to go into high-risk positions or positions that put themselves on the front lines in some way. One of the things I think is important to note is with the huge numbers of layoffs we are seeing in the context of the US, it also means that individuals are losing access to health insurance as well. In some medical insecurity, that is individuals who are not able to for example keep up their medications, who are rationing their insulin, are individuals who are attempting to make do, and subsequently increasing their vulnerability or risk of exposure, the risk of poor outcomes in relation to illness. Food insecurity is something that we know is also up, I've seen reports that food bank usage is up anywhere from 30% to 60% depending on location. There was also a recent report that shoplifting is up, particularly of food and hygienic items. So all of these things combined together to increase individual's risk of exposure. And risk of ill health. Further, there is this issue of racist oppression and political stress. I know that for many folks particularly since the murder of George Floyd, and in the context of the election, there has been a lot of political stress. We have to note that for many people of colour and many black folks in particular really what has happened is a lot of other folks have woken up to the kind of things we have been concerned about, and anxious about, and dealing with for many years. So to see it get increased attention is great, but that doesn't necessarily mean that for example somehow it takes the edge off because more people are on board. I think one of the other things is we are seeing, despite the emergence of BLM or the world right recognition BLM has got, nevertheless racist things continue. Racism in the context of the pandemic in particular and the rationalising effects of it, continue unabated and in many ways and acknowledged. Further, there are the physiological effects of racism. So this is from a very recent Washington Post article, it's as black Americans are forced to operate in your entire lives in battle mode, it is utterly exhausting. Almost all black folks I know are bone tired, and completely exhausted. We also know that one of the things that has come with the kind of racial consciousness raising that has occurred within the last year, or in the last few months, has been for many black folks and increase in requests to do diversity labour, to do diversity work. To allay the fears of other white folks with regards to their own racism or lack thereof. I think any of the concerns or any of the information or the data that we've had with regards to the epigenetic effects of racism on black folks has only compounded within the last little while. And so I think all of us, no matter what our race is, have experienced the effects of high ala static load in the last while. So we have a sense of what that is, what that feels like. The kind of compounding of it that black people experience is something I want to point to highlight I don't think that we think about the physiological effects of that compounding over time. Finally I want to say two points with regard to the vaccine trials. That's one of the things that has emerged due to the vaccines, and one concern is about black folks in particular having hesitancy with regards to vaccines and having a long-standing distrust of the medical establishment. And understandably, due to the long history of scientific racism, of medical experimentation on black folks, nonconsensual hysterectomies for example. And of violations of the black bodies of medical violence. So this has been a recognised problem for example Anthony felt she very recently spoke directly to the black community to put aside their scepticism saying that he wanted to get the vaccine himself on camera, and also wants people to know that one of the individuals who played a whole role – and a huge role in the development of the vaccine, Dr Corbett, is a black woman. So there is this real desire to reach out specifically to the black community with regards to concerns about the vaccine and to ensure that people do get themselves vaccinated. And I want to say, I'm very pro-vaccine. Don't get me wrong! There are reasons for people of colour to be concerned about vaccines. I would say people with disabilities and people of certain ages. One of the problems is, we know for example the AstraZeneca vaccine, one of its groups that fits its data only included individuals under the age of 25. Which is problematic in terms of representation, especially if we think that some of those who are the most vulnerable people over the age of 55. Excuse me, I should have got some water. One of the other issues is that my diners vaccine, both of those vaccines did not include enough black subjects or south-east Asian subjects. So there are concerns here about the confidence interval with regards to the data specifically, for those communities. So while it might be the case that in fact we can say that these vaccines are safe for these communities, there are questions about their efficacy for these communities. Given the lack of representation of black and Southeast Asian folks in the studies. So I'm going to leave it at that today, thank you so much. I know we are already a little over time, I will stop sharing. I appreciate everyone for listening and for coming. Thank you.
GRACE CEBRERO:
OK, and I there? Thank you so much, this has been really upsetting throughout the pandemic. So thank you for breaking down. Would you like to quickly get a glass of water?
CATHERINE CLUNE-TAYLOR:
I'm OK. I had a moment, but I'm fine!
GRACE CEBRERO:
OK. Our first comment says, thank you for all of this, it's been incredibly relatable do you have any thoughts on the way general society has responded to having to live in ways many disabled people do full-time? Limited mobility from home, unable to access social functions, dealing with some of the cognitive effects of allostatic load et cetera? Is there a possibility to pivot towards empathy and a more accessible future going forward?
CATHERINE CLUNE-TAYLOR:
Yeah, thank you so much for this question. I have been thinking about similar things. One thing I would say is, I hope that this has been informative for people insofar as they realise they make these connections. I often have these moments when I hear people complain about being in isolation or the effects of living in the way that we are living right now. And I often say, that's how a lot of people with chronic illnesses live all the time. That's what happens, you have to deal with the unpredictability, you are not sure how many spoons you are going to have on a particular day. I think that kind of variation in terms of what are our individual understandings of normal, it's something that a lot of people are experiencing now. I think unfortunately I don't know that enough people are making the connection between recognising that this gives them an insight into the lives of those with disabilities, so I think we always need to continue to make the connection and keep reminding, to me I'm seeing it as an opportunity to make those links for folks, because I don't know that for a lot of folks unless they have experience of disability or have had someone with a disability in their lives, they have a real sense of what that means or the fact that they are experiencing something similar to that right now. But, I do hope that we have learned and taken away a lot of things from this. In ways that do make the world more accessible moving forward. For example, I know for myself and some of my colleagues, having to do things online now has given me insight into the way that certain things online are more accessible in ways I had not considered. Even as someone who tries to think about disability, I had never considered a teaching a class over Zoom, but when I started doing it I realised that it was so helpful for students who had different styles of cognitive functioning, it was helpful for them to be able to replay a lecture and have me there with it. I realised how helpful the chat function has been for some students, just being able to keep chat of the discussion, or the auto transcription function on Zoom, it has allowed automatic closed captioning of my sessions. I think one of the things, I said this in a couple of talks over the past year, one of the things we need to recognise is that all that stuff we have been saying for years about how disabled folks can't work from home, turns out everyone can work from home. It turns out we can get that done very fast that we need to and we really want to. So I think what we are realising is the increased flexibility in how people work actually makes work a lot more accessible. So I'm hoping we maintain that. I think we will maintain that primarily the capitalist reasons, but not for helping people reasons. So, you know, I think, I do really hope that this leads to a kind of rare discussion about capitalism and the ways in which kind of ill-health and the incapacity is constituted. I am somewhat worried about that. I think that's a great question.
GRACE CEBRERO:
Jonathan Wolff has a question, Jonathan, go ahead.
JONATHAN WOLFF:
Catherine, it was really fantastic. I was amazed to hear it, because I have been doing some very similar investigation at looking at the disparities between different racial groups, both in the UK and the US. My colleague is much better at the statistics than me and has been looking at those patterns and seeing what could the compositor be of the exploration and the patterns of work. Could be patterns of living? Whatever we have looked at, even cumulatively, is missing something. Nothing purely statistically seems to be able to explain the disparity. We have to do, there is a variable that just does not come out in the data. So we thought maybe there is a purely genetic explanation more likely epigenetic's. You have this concept of rhetoric which I was really fascinated with. I don't think we had seen this next step, which is sort of premature ageing, if you then see one of the most striking factors in the numbers is the incredibly poor gradients in Adrian -- Adrian sudden death. Not necessarily infection. The rate of death of the infected is really extraordinary. In this country, very, very few under the age of 60 have died, but when you get up to 80… Is this your hypothesis? That there is this sort of, we need to distinguish biological age and chronological age? If we do that, then maybe we can put everything on the same graph?
CATHERINE CLUNE-TAYLOR:
I think that is going to be part of it, I actually do not know, I do not know that I think it is going to be that simple as you are going to actually be able to find all the variables that completely fit. In part, I think part of the issue is that I think a lot of things are working in concert in ways that escape just the data. I do think weathering is part of it I do think this biological ageing is part of it, but I also think, when you look at biological ageing, by comparing the ends of the wounds are getting it down. That does not tell us about whether -- weathering on particular organ systems. How might this in particular be affecting kidney function long-term stop also, one of the things that really strikes me, that I have kinda been trying to figure out a way of trying to think about and talk about is very much based on my own experience of my father. My father was a black man who immigrated to Canada from the Bahamas. He had very, very, he had very kind of traditionally… Conditions associated with black men, he was a diabetic, high blood pressure, yet kidney failure, all the associated stuff. In many ways, he was someone who seems, had a lot of chronic health issues, but then seemed fairly well managed until suddenly they were not. One of the things that I really kind of noticed with him was, you know, he was kind of functional, but it was a house of cards. He was on a drug cocktail, he was dealing with a lot of stress, he had his own business and so he clearly had issues around weathering, for sure. But, in a sense he was managing a lot of chronic health conditions and so there was a case though that when eventually it was just like the meal that broke the camels back. Things such, apart very quickly. Many individuals are living in this kind of house of cards type way. Where, you know, one month without, one month without their medications and it changes, one month you cannot afford your medications and you start rationing. That changes your vulnerability, it changes your physicality that now in a way you get sick and things turn very quickly. I think that is definitely part of it, I think we need to think about these things about weathering, I do not think we are taking into account the effects of weathering. I think it is still an area we need to learn more about.
JONATHAN WOLFF:
Thank you very much.
GRACE CEBRERO:
OK,…
CATHERINE CLUNE-TAYLOR:
There are more questions, but I wanted to check because we are over time.
SPEAKER:
Jamie…
JONATHAN WOLFF:
… Sorry, Grace, I think if there is one more question you can take, we can start slightly late.
GRACE CEBRERO:
Gosh, J.D. WC says disabled as in the 20+ years old arrange by end of life? Oh my gosh, this is terrible for us. Appearances aside. OK, Jan, I apologise if I am mispronouncing your name. Thanks for the presentation, on the topic of being sceptical of vaccines, our institutional healthcare, your presentation reminded me of a situation of HIV patients in the 80s America. Many patients, especially gay men were sceptical of the mainstream medical narratives, which marginalised them and often saw them as guinea pigs. Using a way to make healthcare, more Democratic. The patient educate themselves to become experts and challenge doctors, is is the possibility of activism today?
CATHERINE CLUNE-TAYLOR:
Thanks that question, I think it is a great one. I am thinking, I am trying to think a lot more about the vaccines, because the vaccination information is newer and emerged while I was in the midst of teaching, I haven't gotten to read as much of it as I would like, I need to wait for the teaching staff to end and to take a very long nap and then come back. I appreciate this comparison, because I do think there is a lot we can learn from HIV activists and HIV patients. Especially those of us in the community. I'm very excited about a vaccine, I think a lot of us are, but I also have worries and I have worries for example, I am always concerned when we are hearing results from a pharmaceutical company press release. I don't like that. I don't like it to start. I do think there is a way that we could see this becoming more democratic, I do see a lot of folks who are starting to educate themselves. One of the issues though is that we still do not know a ton, right? We are still learning about COVID- 19, we are still understanding. One of the things I'm thinking about but I didn't talk about in this presentation is, often, the only numbers that are being discussed other mortality rates and we are just like everyone else we will cover. We are not talking about who is become disabled, many people are being disabled long term by this condition and so that is a population I think we need to think a tad more about. I do think, I do hope there will be more activism right now. So me, what I would like to see is people pushing for more people of colour in trials and to see those trials be ones that also acknowledge the history that people of colour are overcoming in order to engage in. That service for the rest of our community. I think sometimes the exclusion is the result of people being like, "we know they are going to be suspicious, but we don't want to deal with them." It may mean that doing research is more difficult and requires more of researchers in terms of building community with the subjects. I think that is what it has got to be. Yeah, thank you so much that question.
GRACE CEBRERO:
I believe we will take a short break.
JONATHAN WOLFF:
First of all thank you so much, wonderful session and yet again I have more and more… The next three days. We will start in just a few minutes, we can start at 13 minutes past the hour -- 30 minutes past the hour. Great Catherine if you turn your cameras off now and Melinda and Joseph if you put your cameras on. Hi. Melinda…
GRACE CEBRERO:
Hi Jo, I had to say hello.
JOESPH STRAMONDO:
Good to see you.
JONATHAN WOLFF:
Melinda, would you like to check your site?
MELINDA C HALL:
Let me just make sure I am not showing anything else.
JONATHAN WOLFF:
Your secret emails.
MELINDA C HALL:
Secrets. On my conclusion page here, what!
JONATHAN WOLFF:
Do want to put it in slideshow mode? That looks fantastic. Do you just want to flick backwards and forwards. Great, OK. Joe, you know the drill, you have been through this from the other side. Everyone now knows about the caption… Everyone else as I am talking, we are pretty much starting in a couple of minutes. Questions into the Q&A. They will be moderated by Katie and Katie will send them by direct message to you Joe and you will see them as a direct message which will be flagged in red. You will see them in the chat and coming from Katie. Does that make sense?
JOESPH STRAMONDO:
That makes a lot of sense. Sounds good and so, basically my responsibility is just to introduce the paper and introduce Melinda and then just sort of remind everyone about the closed captioning. Then, let Melinda take it from there? Does that sound OK?
JONATHAN WOLFF:
That's it. At the end Shelley and I will come back to round things off after you have finished. Sorry, you're OK… With that another question coming?
JOESPH STRAMONDO:
I was going to ask Melinda if she could direct message me the title of the paper, because I do not have it in front of me. That's why I do not have to go digging through the conference program.
JONATHAN WOLFF:
I am getting off camera microphone now and Jamie will send you a message J when we are ready to go live which will be on the half hour.
JOESPH STRAMONDO:
Thank you, Melinda, I got it.
MELINDA C HALL:
Melinda Hal I'm in my office for the first time in a while.
JOESPH STRAMONDO:
Do you have any windows?
MELINDA C HALL:
I am trying to use that light, I have one in front of me. That's the reason I'm here.
JOESPH STRAMONDO:
My first job I had an internal office with no windows in it. That was kind of wild. Anyway, it looks like it is time to begin. So, I want to welcome out everyone to our next panel. The title of the paper is "risking ourselves, the politics and persons of risk". My name is Joseph Stramondo and I'm assistant professor at San Diego University and serving as the associate director of the University's Institute of ethics and public affairs. Our speaker today is Dr Melinda Hall, she holds a PhD from Vanderbilt University in philosophy. She is an associate philosophy and chair of philosophy at Stanton University. -- Stenson University. Rachel Stetson University. She is also Stetson's higher education in prisons program. She specialises in bioethics and the philosophy of disability. Hall is the author of the book "the bioethics of enhancement." It was put out by Lexington books in 2016. A very good read, if I do say so. Her current book project is centring on the ethics and politics of risk, which I am guessing might be related to the talk you are giving today, judging from the title. Paul is also the author of articles published in journalist like studies quarterly. Feminist approaches to bioethics, the philosophy compass among other venues. In her very little free time, I would imagine, she is also led to support Shelley Tremain as co-editor over at biopolitical philosophy. I just want to say on a personal note, I have known Linda since -- Melinda since we were in grad school and reading her bio next me both very excited and proud of her for her career now at this point and it also makes me feel very old. That she is the chair of philosophy at Stetson., Congratulations to Linda and I were handed over to her now.
MELINDA C HALL:
Thank you very much Jo, I remember the first time we met I believe it was at the peanut barrel in Michigan, thank you for that kind introduction. I'm going to go ahead and begin sharing my screen. I'm going to talk through my work here. I'm going to be talking through my work, I don't want to read my paper, I would rather work through the ideas with all of you. And I would say that it is my want to speak too quickly, so I will try not to do that. If I do speak too quickly, if somebody could indicate to me that that is happening, then I can sort of stop doing that. OK, so as Joe mentioned, this talk is obviously connected to my book project. This book project has been on my mind and on my desk for quite a while now. And one of the biggest and most surprising interruptions to the spec project – MacBook project is COVID. I will definitely be addressing that and thinking through that as well. I describe my work under the rubric of philosophy of disability, this is informed by critical disability theory, which is interdisciplinary. The task of this sort of work is to analyse disability as cultural, as historical, as relative, social and political. What we are always trying to do with in critical disability theory, or at least what I'm often trying to do, is push back against naturalisation and medicalisation. So the work of critical disability theory always involves or often involves scrutinising not bodily or mental impairments but the social norms that define particular attributes as impairments, and this is from a quote by Sammy Schalk which I really appreciate. What is disability on this sort of perspective? Overall, disability is not natural, it is systematically produced institutionally and disgustedly. -- Discuss heavily further, I follow Shelley's perception that she argued in 2001 she situated it as a naturalised precursor of disability, and part of a larger historically relative political apparatus. Which she reiterated in her recent moderate -- monograph published in 2017. What does this not mean? It does not mean that disability and impairment are not real. The idea that these things are socially constructed, politically relative, speaks just as much to their reality, their measurability, their reality, as a more sort of medicalised view might speak. We just have fundamentally reframed how to understand disability, what's important about it, and what it points. So, to be specific about what my work looks like, I investigate sites or contexts of disabilities construction, largely trying to reject the false choice of either the built environment or embodiment as the primary explanatory mechanism. I want to reject -- resist homogenisation and naturalisation, the point about homogenisation is that I don't want to create a monolith in my work about what counts as disability, it needs to be variegated and responsive to the variety of intersecting disabilities that are involved. Overall, I read disability as a way to track who has power, who can speak truth, and how our world is organised. And to speak to the theme of this conference, philosophy and social change, I wanted to iterate the fact that my work and the kind of work I strive to do, because it involves the scrutiny of normative aetiologies, in the words of Jr Munich, it shouldn't occur further knowledge on its own sake, but she says in support of justice for people with stigmatised bodies mine. Again, that latter phrase is a quote from Munich's work in 2016. So, philosophers of disability, I argue, should work in solidarity for the purposes of liberation with people who are devalued or apologised, but as Julie points out, may not always be labelled or self identified as disabled. This cuts across a variety of different marginalised groups. So, with all that said, might sort of research overview, sharing with you and letting you in on my work, I would like to begin talking about the main subject, my talk today is about risk. I find risk absolutely fascinating. I've been working on it since sort of the Ebola outbreak in 2015/16, actually as far back as December 2014. This has just been a source of endless philosophical fascination for me. So my current book project does focus on risk, what I'm trying to do is figure out how risk is constructed. And how it intersects and overlaps with disability, impairment and these are the structures and ideas, that I want to investigate. I'm also interested perhaps most importantly in the distribution of and attribution of responsibility for risk. In bioethics and public health contexts. What I'd like to do with this book is reframe ethical issues presented by dominant understandings of risk, and consider the fact that most of the time people talk about the ethics of risk, communication, they usually say that they people don't understand risk, they don't have two be helped to understand risk, and that's the main ethical issue. How to be clear in the communication of risk, especially to those who don't have that sort of base understanding on what it means to change your behaviour. I just reject this as the primary problem connected to risk, and I would like to reframe. I would like to uncover how individuals and populations oppositions -- are positioned, specifically as subjects of risk or risky subjects, doing risky behaviours. I want to collective eyes the ways we are asked to manage risk, I want to push back against the individualisation of responsibility for risk. Of course this is familiar to those with an interest in sociology and with an interest in Foucault as the concept of responsible eyes ocean. I now showing an image of the COVID-19 virus. It's on a grey background, it has read sort of appendages, pustules, I'm no viral expert so I'm not sure what they are called! I have this image up because I want to indicate to you, as I mentioned earlier, in the centre of my work, or at the beginning I suppose in some ways, all of a sudden we had this major issue that turned everyone's attention. This makes my job in my book both harder and more important. I do believe that the perspective that I have in my book is worn out, -- borne out by what is happening with COVID, and I'm very excited to continue this work now with a sort of very important example of how attribution for risk and responsibility for risk gets done. So what is that main argument that I think is with covert discussions? That is that risk management discourses tend to marginalise those affected by them, and paradoxically increase the harms to which some other subject. Now, I'm not going to say increase the risks to which some are subject, although I'm often tempted to do that, because I don't want to reiterate or re-inscribe or verify what risk is. I think that risk is political, all the way down. Which I will talk about in a few minutes. The reason why, and I have my primary argument in bold on my slide right now, that is what I just read out, risk management discourses, tend to marginalise those affected and paradoxically increase the harms to which the summer subject. Part of the reason this happens is because of that responsible, what I'm going to do is use COVID to demonstrate that. So that's the critical side of my project, the positive side of my project is that I claim, I argue that responsibility for risk, especially health risks and may be the especially just comes from my particular interests and my desire to work in this area, should be collectively shared. So in order to do this, in order to share responsibility for risk, we have to read risk politically. And the language of risk we have currently, the discourse of risk must be interrupted. So I'm going to make a couple of recommendations as to how we might risk ourselves together, at the end of the stock. I have done a version of this talk very recently that is quite a bit longer, so I have other things to say but I want to be very mindful of my time. So there may be some things that I want to address during Q&A or I might get the opportunity to address there. So what is risk? You won't be surprised that the way I approach risk is very similar to the way I approach disability and impairment. Risk is most familiar though to us in the guise of risk assessment. In some discursive sessions -- settings, risk and risk assessment are used synonymously. Golding and Tula mentioned this, they said there is no concept of risk as such, there is a concept of risk assessment which tells us what to focus on but there is no nugget of materiality or conceptual sort of certainty that is risk. So we have a lot of areas in which risk assessment occurs. These are sort of everywhere. This list is in no way exhaustive, but up on my screen I have a few different arenas in which we will be familiar with risk assessment. Public health, property damage, environmental protection., I have read this really cool piece by
Obasogie was to do risk impact assessments for new medicines. I'm going to look into it for my next project. There is also a risk assessment happening in long-term conflicts and instructions. What do we get out of all of this. Most of the time what we have is risk as a technocratic science. Risk is a technocratic concern and it gives rise the whole arena of professional workers and the whole arena professions. Specifically you might get the certification of risk managers, that can happen in construction, that can happen in other arenas. As a technocratic science, risk is going to double down what I have already denied, which is that there is some kind of nugget that is risk. That risk .2. Risk assessment is going to obscene adaptive risk managers, or at least stable once unacceptable levels of risk. It is going to describe acceptable levels of risk. Theorisation in public health may equate risk to complex calculations. The multiplication of emissions, transport, loss factor, exposure period, uptake, toxicity factor. You might think that sociology has a lot to say about this and indeed that is right. Way back in 1982, Mary Douglas and Aaron while Duff ski argued that worries there may be a disparity in risk between the expert and the layperson. What is presented in those conflicts is different lifestyles, different things that are important to folks. Somebody might say, "I am going to take this risk and I do not even see it as a risk, this is just something that is of value to me." They focus on the culturally dependent nature of risk evaluation. You get different kinds of clusters in sociology lecturer, Kahan talked about different race. As I really started to indicate, in bioethics and public health, they frame that kind of discourse, they frame health is personal risk management. This has implications, right for audiences of risk communication. What you are being told against this larger backdrop of a risk assessment and cultural values and things like that is that you are responsible for your own risk factors. For your own risk management. This has implications both for your understanding of yourself, your understanding of others and your understanding of the whole of medicine. So what do I want to do here? I want to push back. There are many alternative portions of risk and learning what risk really is and by really, I mean how it sort of appears and who is responsible for its is going to require investigating the many types of stories that we tell about risk. I do not think we should privilege the understanding of risk in a risk assessment sciences. Given the fact that current practices in medicine and public health tend to increase harms, rather than decrease them, I believe we should also be suspicious of healthiest risk management. That is my starting point. Again, I worry about going long, so I am going to try and be quick here. So this is where I could really go into depth, but I'm not doing that today. I have in this planned book project, I have been working on these different sites of risk construction, really case studies that I am engaging. I would just say one or two things about these. In terms of police brutality, I am very interested in the example of Darren Wilson's testimony in the case of his shooting of Michael Brown, in which he articulated that he could not attest to the fact that Michael Brown wasn't armed, or wasn't carrying a weapon, insofar that his body constituted that weapon. So you get these sort of very odd moments in which risk assessments, in view -- imbue danger into a particular subject, similarly George Zimmerman, in central Florida, 15 minutes away, George Zimmerman shot and killed Martin and he said that there were… He was armed, because have thrown George Zimmerman onto the sidewalk. In cases of brutality and engagements in which folks are doing these sort of supposedly split second risk assessments. What they are doing is they are attributing certain individuals with danger, or with risk. We had gun violence with shootings in which people are trying to figure out how do we handle this risk. You get the hardening of schools, which I am going to argue is a bad move. In direct to consumer testing in choosing children. You get the idea that you are responsible for your health and deeper in ever new ways. You are sort of prove either, a patient in waiting to use the language of another philosopher. This is where I started with this project in regards to Ebola and seeker, you get the construction of what the risk is and what it means. The racialised body, the potentially disabled child, the infant with microcephaly. You get the sense that, well you could allow the -- you should allow yourself to be bitten by a mosquito, because then you might cause disability in a future child. So what did we find of these citations over all. Risk is constructed a political all the way down. The risk is not an inert description, it is a floating signifier for this I am pulling from orders -- in earnest, there is no stable rope linking the signified in the signifier. Risk landscapes can be otherwise, we can do something different. So somebody might ask, "well, OK, this sort of seems like a trivial point. Is the point that you make that risk is constructed, or political all the way down merely sort of every description of what risk assignments -- risk assessment site is. Isn't it precisely these ways have been talking about, that is, for example, it is already considered shifting and deeply circumstantial. I respond here, the technocratic risk assessment holds the wrong factors in abeyance was up it is holding as neutral, this discursive and institutional. It is holding as variable individual behaviour. So what is shifting and deeply circumstantial on my account is not individual behaviour ignorance, but it's shared and political features, institutions discourses, political decision-making, material conditions. I most agree now is an image of my favourite philosopher, Michel Foucault. He is wearing glasses. I have featured his perspectives, refusal of the status quo, creativity, innovation which is make about in the 1980s interview with Michael bless. -- Michael Bess. I want to be creative in thinking about sharing and collective rising risk and innovate, that is create political projects around risk. These are my primary claims and I need to be mindful of time, so I will simply try to keep this really sort of brief, or at least concise. Risk management discourses again what I'm seeing as you marginalising those effective and increasing the severity of the hubs in which they are subjected. My example to keep this concise is with the hardening of schools. Somebody says "we have to protect our school districts from potential school shooters, there is a credible risk here and the risk is that somebody will come in and with a weapon and kill folks who are on site." So what happens, you get this sort of deep hardening of schools, post-Columbine here in the US and hardening is where you have on site police officers and their officials representing various law organisations and fences and metal detectors in all of these things. What we see here is just the deepening, the explosion of the school to prison pipeline. What you do in the name of protecting children is send them to prison is my argument. What you get is a marginalisation of the very persons you want to protect in the name of risk management. I'm also claiming their risk subjective eyes. You get all kinds of different figures in regards to risk, you had the adverse population in schools to follow my example from before. You get the venture capitalist on the very other end of the spectrum. I am just so fascinated by the fact that some folks are celebrated for taking risks as summer castigated. The primary thing that I want to focus on today, to kinda begin to end this conversation, or to get closer to the sort of upshot of my presentation is that risk discourses are productive failures. Dan Taylor helped me with this concept a few years ago at a conference, I believe it was at a point to remind me of the importance of this for -- Foucault. The something else that is convenient here is the individualisation of responsibility, it is convenient for new liberalism. It is the concept of responsible isolation, that is the making responsible for risk, for choice, for their life. The material circumstances of the light. You can see that in Foucault and its history of sexuality published in English in 1890, Catherine Mills picks up on this in a book chapter in 2016 in an edited collection by Wilma, that is quite nice on resisting biopolitics. So what is a response belies a COVID- 19 project? This is going to get as to the upshot of my project was up the responsible projects are state-owned, what a hands, social distance and whereabouts. It will be no surprise to anyone in this conversation, I do not think today that you can't do these things unless you are positioned to. The same folks who are being pushed to do these things, also had to survive, so they leave the house for work, or they are crammed together in close living quarters that are not saved, or not well ventilated and so you get these claims. Love your neighbour, wear a face mask was up I mentioned earlier, the car and I always use this example. I am here in Florida, I have used this example since I started on this project a number of years ago. When the Zeke virus was an outbreak, I saw in my building a poster that said do not let get bitten by mosquitoes. They had a woman with a scan of -- a can of bug spray and stuff like that. And I can cannot be bitten by a mosquito, I live in central Florida. I have lizards in my office. It is Florida, it is alive here. The idea that I had with respect to that, which is just one small part of my overall project, you can directly trace, what needs to happen here in Florida and it is not to do with me wearing long sleeves. That is, we need better wetlands management here. Our wetlands management, or lack thereof, creates the situation in which mosquito populations explode and they are the viral vectors for the Zika virus. So in much the way of looking at this, and what I've got on my screen at the moment is an image, it says let -- love your neighbour, where a face marks. There are three people wearing masks, it's from the Council of Wisconsin churches. It reminds me of the car because it looks like it's my job to ensure the reduction of the spread of COVID. But I can wear a face mask and still be in danger because of social and political decision-making. So I want to talk about collectivised COVID-19 projects, then I will wrap up. On this slide I have an image of two hands, they are drawn, they are holding each other. They are in black and it says underneath in stylised text, we need each other. So what a collectivised COVID-19 project? Mutual aid, de Caceres and, that is, letting people out who are on parole, getting people out who are not yet charged. De Caceres and in general, abolition, universal basic income. How can I stay at home? Got to keep the lights on. Debt relief, online/remote working and learning. These all come with their own risks. I want to talk about that in a minute, just as I finish. On my screen now is a screenshot from a website, by the mutual aid disaster relief group, which is a grassroots effort. It says collective care is our best weapon against COVID-19 and other disasters. There is a lot of text there and you can visit the website mutual aid disaster relief.org to visit it. It says our stockpiling is not sufficient. We have to ground ourselves in an ethics practice of social solidarity. I just want to end with one warning, and I actually do have one more slide here, I keep saying I'm going to end! I have a warning or concern, coming from the idea of nudging or what Richard and Cass described as "Choice architecture." In 2005 they said we should promote people by nudging them to do things in their best interest, because my -- most people don't and we don't understand risk properly. I rejected this in a variety of ways, I'm happy to discuss the mooring Q&A. Essentially, this is a new -- neoliberal strategy, this is an apparatus of choice. That means that we have material discursive elements shaping practice within a given context. This is a literal choice architecture idea, it's a literal working out of the apparatus of choice. So why do I call this a warning? Well, whatever collective responsibility purpose looks like, it can't be the neoliberal choice culture that they talk about. I think we need b models of collective responsibility, I think we should re-conceive risk engagement as a collective project. Indeed, we can read these things as risky even while saying risk is political and constructive. So I want to ask everyone to risk ourselves together. And that is actually where I will stop. I don't know if I can stop sharing. Hopefully I have!
JOSEPH STRAMONDO:
Wonderful, thank you for the terrific talk, Melinda, I learned a lot. I'm sure others have as well. We do have some questions, the first one is from Shelley Tremain. She asks, near the outset you said the risk is politically constructed all the way down, I agree with this. I found myself repeatedly confronted by an disagreeing usually silently, with disabled activists who say they are high risk. Fair enough. I think their claims naturalise both risk and disciplinary, why do you think disabled people including activists and theorists who argue for social construction of disability, seem to revert to this particular way of naturalising disability address?
MELINDA C HALL:
Thank you so much, that such a fantastic question, Shelley. I think it would deeply resonate with it. I will say I don't have what is an amazing answer here, but it does remind me of what I've been thinking of I want to say partially, I need to work this out. I have been thinking of this as a strategic essentialism people fall into. It is very politically inconvenient or hard or problematic. I see it when people seek out diagnoses to get care, I think it's the same sort of move. What does it mean when somebody says "Hey, I'm high risk of this." They are asking for a shift in the way we do things and the way we organise the world around us because they have a need. What does that mean? The need itself can be described and re-described in a number of ways, and leading towards the social and political. This isn't to refuse the idea that people have a body, in fact they do. As I've tried to say from the outset disability and impairment are real. Even as I'm describing them as constructive that does not mean they are not real. I do think the worry here is that when you insist you are high-risk you buy into these claims that there are some that are disabled and some that are super disabled, there is a hierarchical set of claims that can be really deleterious to politically progressive projects. But we do that, I think, because of the limitations of our current discursive situation. We know how we have to get the care. For the things we need. And that is to use this language. I think it is not good! So I like that question a lot, I wish I had something richer to say here, but I do see it as continuous with seeking diagnosis to get accommodation for example.
JOSEPH STRAMONDO:
So we have a second question, which is a follow-up. From Cynthia Stark. Thank you for your timely talk, I'm wondering if your claim that risk is political all the way down leaves room for a distinction between actual risk and perception of risk. I'm thinking of your example of white cops believing themselves to be high risk, and confronting black men. So there's that question about perception versus actual risk.
MELINDA C HALL:
I like that a lot and I'm really struggling with this. This is sort of what is behind one of my initial comments, that I want to avoid saying something like paradoxically risk is increased, the discourse, that paradoxically Hamas increased risk discourse because I don't want to reiterate it. It's related to that, let me see if I can say something moderate. I do think we can have bad interpretations. We can have bad interpretations of social and political circumstances. We have better and worse insights into the world around us. And I do also think that who believes themselves to be vulnerable is highly politicised right now, along racialised terms, along gender terms, things like that. And of course disability as well. So in terms of real risk, it might be really tempting to say something like trait on Martin was the one who was really at risk when he encountered George Zimmerman on the street, George Zimmerman for he was in trouble but he was in a truck and chased him down. And then he jumped out and attacked him. So the risk was actually reversed, he was quite wrong about it. I guess when I want to resist saying Martin was at risk in that moment, that it was the word we should use, maybe we could say open to injury. Or talk about the ways in which our racialised landscape in the US, in central Florida, in this gated community 15 minutes from my home, that that sort of creates a situation where some are open to injury and some are not. I am not open to injury in this space. So what does that mean? Maybe it's a distinction without a difference, I'm still working on this. I don't want to say for now that its risk, that it's something called risk.
JOSEPH STRAMONDO:
Cool, so our next question is from Benjamin Carpenter, this has been a fascinating talk, thank you so much. I wonder if we could understand your line of explanation alongside a deep criticism of the notion of individuality, often at work within contemporary political discourse. I'm thinking about how some people in the UK and often elsewhere have often made the claim they are "Happy to take the risk" identifying social distancing instructions as if that risk is theirs and theirs alone. This seems to reveal that an individualistic way of viewing something, and agency isn't enough. I would love to hear any thoughts about this connection to health and public good.
MELINDA C HALL:
Yeah, I absolutely love that. I think you are precisely correct. This is a very farcical way of talking about risk. It's a way that's available to some people and not even available to them. They might say "I'm just going to go ahead and move forward" I guess in one way it's available when people say they don't care if they get COVID, even on their deathbed or something like that saying they don't care if they get it. I guess I want to say that yeah, we want to talk about people's tolerant -- tolerance for risk now that COVID has changed we talk about risk. In other words, someone might say they have a higher tolerance for risk than you, so they are going to go on the trip. I'm going to go to work, I guess I have a higher tolerance to risk venue. But we don't have those sort of personal relationships to COVID, we have a collective relationship to COVID. You can see that in the now famous example of the main wedding in which no one who was at the wedding died of COVID, but after the small wedding occurred I think there were 55 at the wedding and 12 others died? Something like that. Nobody who died was actually at the wedding, but they did die of COVID because of the wedding. So I just think that we don't have personal relationships to risk with regard to COVID. When people talk like that I think what they mean is something like "I don't have to care about this" and the reason they don't have to care about it could be a moral failure or imaginative failure, something like that. It's just something we have to keep working on.
JOSEPH STRAMONDO:
Great, OK. Our next question comes from saffron Miller, they say thanks for the great presentation, I very much appreciate your critical approach to risk. Often in the literature quantitative risk assessment is contrasted with an invocation of the precautionary principle. The examples that you give with school shootings and covert risks seem to be more like a criticism of the precautionary principle, that we must protect our children and neighbours no matter what regardless of other potential harms. Which is what a lot of risk assessment models also try to assess. Although I agree they don't always succeed in doing so. So I wonder if at least some of your criticisms can also be used against the very precautionary models the standard risk assessment models are intended to supplant.
MELINDA C HALL:
That's really interesting. I wish I had an answer for that. I need to think more about the precautionary principle as a sort of replacement. Just briefly, it seems to me the precautionary principle is continuous with risk assessment because it is still can -- still dealing with contingency and class. Someone suggested we live in this risk society, that the reason it's a post modern formation, in which we take contingency and chance to be central features of our lives together, and this risk assessment stuff is what we are doing in response to this idea that a central feature is trans and contingency. Maybe the precautionary principle is an attempt at a sophisticated philosophical stance with regard to contingency and cut chance. It's also status quo preserving, so when I taught precautionary principles arguments in my bioethics classroom, I've often noticed it is status quo preserving, politically progressive, or is it going to maintain the current circumstances? So I would just say that I'm going to have to keep thinking about your question and I really appreciate it.
JOSEPH STRAMONDO:
Our next question is from August, they say this is such an important project, thanks for the talk. I'm wondering if you have any thoughts about what tools collectivist approaches to risk might have? For interacting with people who have very high risk aversion. I'm thinking in particular of how people with health anxiety might factor into these approaches.
MELINDA C HALL:
This reminds me of your talk, August, there is the sense of the personal relational. I was talking to my own part about some of the things you said during a talk about how your access concerns interact with the people in your immediate vicinity. I thought that was so helpful. I guess, I want to say, that in my mind, some of these political products -- political projects open up new ways of interacting. So mutual aid societies and things like that create other spaces which make spaces for recognition. Thinking about health anxiety specifically. I might very tentatively say something like, the clinic is the space in which the meanings of medicine and healthcare workouts. In mutual aid collectives and in other spaces in which there is the grass roots growth of sites for engagement with others, both politically and personally. You might get new arenas for subjectivity in which you have no experience related to medicine, or something like that. I am not going to say that is going to quell, or change. I guess what I mean is that hopefully, shared political projects provide new space for engaging with each other immediately. So, maybe that is in line with the food bank. We come up with really interesting ways of picking up food that is responsive to folks in a pandemic. I think we have seen that, refrigerators that are unplugged and out on the street, you can walk by and get things on your own. Add in Seattle and Portland and things like that. There is no sort of office to which you are going and applying and being in a crowd there, or something like that. I think this is a really interesting and important question. Thank you.
JOESPH STRAMONDO:
Great, we have another one, I am not sure if we will have time for any more after this one. At least this one. From Michelle, sorry if I mispronounce your last name, Michelle Ciurria arse, your objection to the politics of nudges is very interesting. Can you say more about this? I am thinking of Canada's decision to print graphic images of the adverse effects of smoking on cigarette packets. Which could be considered a nudge. You think this sort of policies problematic?
SPEAKER:
Just briefly say something, there are huge corporations whose behaviour can change in terms of being taxed, regulated differently. Syntax are articulated against individual people, that becomes your foolishness if you want to smoke and just, this is just kind of interesting. I do not know if folks know about this, I think it is pretty well known. A lot of nurses smoke. It is often because they only can go on a break, they can go on a break every hour if they smoke. Otherwise they have to wait longer for their breaks. That kind of thing, if we are talking about the politics of nudging as asking a hospital to have a different break policy, that would be fine, but that puts the onus of responsibility somewhere else. I worry about the assumed, first of all the assumed nudging policy whether as a scientific understanding that is better and correctable reasonable and more technical and then there is laid person ignorance they are trying to combat. There is industry that is assumed as problematic and at least, politically complicated and needs to be uncovered more. I am trying to be more expressive when I use the word problematic in actually say what is underlying that. Then, secondly, I think that, the nudging is, it is aimed at individuals, why? It is just being responsible again. It is a bit more complicated, but yeah, so thank you.
JOESPH STRAMONDO:
It is probably our last question, because we are just about a time. Julie may be asks, thanks for the great presentation. The idea of risk discourses made me think of another discourse on risk that we hear about in the disability studies literature, namely the idea of being able to take risks as one of the freedoms and a good thing that is often denied to disabled people. Would you be willing to comment on this kind of discourse? This came up in my talk yesterday.
MELINDA C HALL:
I took note of that in a presentation of the dignity of risk. I think it is exactly right, this goes to the venture capitalist risk subjects stop some people are in our risk landscapes and I want to multiply all of this. It is not homogenous, but some folks are praised for taking risk. You have to be a certain kind of person, the venture capitalist that isn't the white male, is going to be told that they are foolishly investing, so you get definitely, I think permission to take risk and this is just the whole others objectification in my mind of what risk is. It's all about. When I mean by that, I think is yeah, the dignity of risk, that Joe was talking about, if you got that, it would be an indication that you had more power. That is good, people should have, we should reverse power relations. The reason why that looks good, I think is because of neoliberalism, or capital structures, or something like that. It looks good because the people in power have that, you know. I am not saying that you should not be allowed to take off down the street, really fast on the skateboard. Or something like that and that is silly, that feels amazing, take off down the street and a rickety old skateboard, let's see what happens. I am saying that this idea of the dignity risk thing is coming from the fact that you did get this image of power in our culture that is connected to the sort of venture capital is picture of what it is to be successful, or something like that. This is very broad Street, but I think it is super important. Thank you.
JOESPH STRAMONDO:
Excellent, thank you. I believe we are on time.
JONATHAN WOLFF:
Absolutely fascinating session, thank you Belinda and thank you Joe for chairing and thank you for all the questions, I know we had more that we can ask, I know that because I have some myself. It is yet another area where I see connections with so many different areas all joined together. Thank you Belinda, thank you -- Melinda, thank you Joe, we will give you our customary small applause.
(Applause)
JONATHAN WOLFF:We are going to close a formal conference quite soon. We have instructions virtually the break group, before you click on anything, Shelley and I both want to say some words. Shelley, do you want to go first, or shall I carry on talking? I wanted to thank the people at your school who did a tremendous job of helping us with the tech throughout the conference. I have had a number of people say to me on Facebook and Twitter that, this has been the most seamless and flawless conference in terms of a zoom presentation, so I want to thank them. I also want to thank all of the presenters and chairs, it has been an absolute breathtaking three days, I have learnt so much, it is been so thought-provoking and I am just so appreciative. Thank you, I think that this conference has pushed the limits on how philosophy and disability has been done and represented and conceptualised and I am very proud of everyone. I want to thank you Jonathan for being such a great co-organiser and I will let you finish up.
JONATHAN WOLFF:
Amazing a job doing a co-organiser with Shelley, Shelley came up with all the ideas and Shelley would send me a long email with suggestions and I would send short emails back saying a quote that is a good idea." We from the blood Blavatnik School of Government, with Jamie doing all of the work have been with us all three days sorting out the zoom links and the YouTube links. Making sure that everything ran smoothly amazingly every presented it right on time ago the presentation on time and all the chairs were here, Jamie was behind the scenes sending out links in emails and making sure that all worked. I would also like to thank the captain is. I do not know the names of the captain as, is is the most incredible work to capture in a conference like this. The technical terms and the speed at some point it is amazing to see disappearing in front of your eyes. Thank you so much to the Company, I should also thank the Alfred Landecker foundation who supported the research program which is paid for the expenses of this program. I would like to thank all the participants, there are 60 of you who are still here. What we now do is to try to move us to breakout groups for those who want to do it. You will see in the chat, there is a link. What we need to do is to 1st of all decide whether you want to stay with the captions. If you would prefer to be in a breakout group with the captions, just stay in this meeting. If you want… If you don't want the captions, then if you move to the other link, we will put you in a smaller breakout group, where we can have a discussion. I will stay around for a while, I am sure Shelley will as well. I need one piece of technical advice, what happens when people join the link?
SPEAKER:
I think we will close off this entire zoom call. We would join up on the other link with the caption will follow us. If anybody wants to stay in that main room, they can do so for captioning. Otherwise it will be subdivided into other rooms. If everybody could follow that link that I am posting.
JONATHAN WOLFF:
We should click the link before leaving, is that right? You can click the link, or leave and then press to go to your browser window.
SHELLEY L TREMAIN:
OK, I am going to click the link and leave and I'm going to go the other one and then I am going to leave so that if there are people who get there early, I would be right there for them. OK, goodbye.
JONATHAN WOLFF:
About everyone and thank you again to the presenters, the audience and I see some of you in the breakout shortly. Fantastic.
SPEAKER:
I would just repost this link and I will see you there.
SHELLEY L TREMAIN:
Thank you so much, it went so smoothly. I attribute so much of that to all the fine tuning and planning that the people at your end, thank you so much.
ANNA WALKER:
No problem, it was all down to Jamie!
JONATHAN WOLFF:
We've got the name of the captioner, Murray, thank you Murray. Everyone is coming in now. Fantastic. Some people have their cameras on, some people haven't. We've got a good number, 31 already. So there are some people recognise, Cindy, nice to see you.
SHELLEY L TREMAIN:
I can't see anyone.
JONATHAN WOLFF:
You probably need to change to gallery view, have you got it on speaker view? Top right corner.
SHELLEY L TREMAIN:
OK, go to gallery view. OK, great wonderful. Now I'm seeing all kinds of people.
JONATHAN WOLFF:
So you've got your classic Zoom view now. Jamie, you were with us?
JAIME:
I set up breakout rooms in just a minute.
SHELLEY L TREMAIN:
Joe I thought you did a wonderful job of chairing, thank you very much.
JOSEPH STRAMONDO:
Thank you very much, it was my pleasure. I always enjoyed talking with Melinda commit to do in this way was quite delightful.
JONATHAN WOLFF:
I think all our chairs really did us proud. A very high professional standard I guess by now a lot of people are very used to speaking to a black laptop, it was a discipline -- difficult thing to get used to at first, speaking to a screen and not knowing whether there was one person or 1000 on the other side, or none which I think is sometimes happening. Students disappearing without the teachers necessarily knowing. So we have something in the chat, Nikolai said hi to everyone. Jamie, what are we going to do now?
JAMIE:
I'm just about to open the breakout rooms. So as mentioned, if you would like to have captioning, please stay in this room, please decline the invitation to join the room. Otherwise please join the breakout rooms and I hope you enjoy your discussions. And also, just to say, you can always return to the main room at any point should you wish to.
JONATHAN WOLFF:
I think we are randomly assigned.
JAMIE:
OK, I will just check
JAMIE:
So to anyone who is still in our break room, please feel free to turn on your audio and video. If you wish to discuss the conference or anything else with your other attendees still on the call. You will be able to see who's on the call in the participants window on the right hand side.
JONATHAN WOLFF:
Jamie, there was a small glitch there, I was assigned to the same breakout room as Shelley and no one else. Which wasn't quite the plan. Can you see who is in which breakout room?
JAMIE:
Yes, if you were to rejoin your room, I have made you a co-host.
JONATHAN WOLFF:
So if I go to breakout room, I go back into room, room five IC. That's a sort of management room. How do I join it?
JAMIE:
At the bottom there is a breakout button, you should be able to press it and go through.
JONATHAN WOLFF:
I've got breakout room, I don't seem to have joined recovering. Because I've been in and come back out again.
JAMIE:
When you click on the breakout rooms do you have any options there?
JONATHAN WOLFF:
Now I just get breakout rooms in progress. OK, I can do it.
JAMIE:
So as mentioned, anyone who would like to come onto audio and video, please feel free. We do have captions available in this room.
SPEAKER:
OK, I'm going to use the captioning.
ANNA WALKER:
For those of you who have remained in this room, if you have done so because of the captioning please feel free to turn on your audio and video and discuss any elements of the conference that you would like to. This is a space where you can do that.
JAMIE:
OK, so we have a few people in this room by the looks of things. We have Jerry, J.D. WC, and L you'd, great stuff. So this is just a kind of social event. If you would like to discuss anything with people in the other end, you are more than welcome to discuss in this room for which we have captioning available. Alternatively we can assign you to a specific room, and may be assign one of our captioners to that room should you going -- should you wish to go and join other people. Just let us know what you would like to do. In relation to your question, I think some people were probably doctoral students, and I think others are teaching faculty at various universities around the world. Sorry, I'm not too sure on the specifics of the conference, and just sort of helping with the technical side of things. If you like I could assign you to one of the breakout rooms and also tried to transfer one of the captioners there if you would like to discuss in more detail with some of the other participants, I know Jonathan is in one of the rooms, we also have Shelley in one of the other rooms. If there is any particular room you would like to be placed into, if there is a particular person you would like to speak with I can put you into a room with them. And also put a captioner in there for you. Thank you for joining, Nancy, and just going to assign you to one of the breakout rooms. Jerry, as mentioned I can assign you and one of the captioners to a breakout room. You should still be able to discuss things with people in there. No problem, thanks for joining! Anna, are you able to jump between the rooms? I assume so. I assume you can select which poker room you want to join.
ANNA WALKER:
No, because you are the host.
JAMIE:
There is a blue number next to each one, with how many people are in there, you should be able to join.
ANNA WALKER:
Adjusters breakup room five, but I don't have the full view.
JAMIE:
You might want to join, otherwise I will just run through the different rooms make sure everyone is happy.
ANNA WALKER:
Do you want me to hang on until seven?
JAMIE:
If you could stay on for maybe a couple of minutes, just in case anyone joins in. Then I will jump back. Thanks for working late! And captioners, if you wouldn't mind staying on the line, just in case anybody joins. Anna Mackay Melinda, thanks for joining us. This room is if you need the captioning, this is the space where we currently have the captioning. If you would like to join a different breakout room we can move across, if you do need captioning we can move one of them with you.
MELINDA C HALL:
Thank you, I don't need a captioner but I appreciate anything you've been doing.
ANNA:
I just need to grab a colleague to pop you into one of the breakout rooms.
MELINDA C HALL:
I like your duck.
ANNA:
Jamie, Melinda has just joined us, if you can assign her through to a breakout room, please.
JAIMIE:
You had the joy of selecting who you may wish to joinery with. If there is anybody in particular.
MELINDA C HALL:
I always want to talk to Shelley. (Laughs) I do not know who is out there, put me anywhere.
JAIMIE:
Let me see if I can do this.
MELINDA C HALL:
Thank you so much for everything.
ANNA:
Did you manage to join the whole conference?
MELINDA C HALL:
This morning I skipped except for Tommy's talk. Just to try to sort of get started having my own. I was able to go to everything the first two days and I thought it was just awesome.
JAIMIE:
This is the list, you can have your pick.
MELINDA C HALL:
I would love to go to room three, that looks like a smaller room. I will fill out the roster there.
JAIMIE:
Great, just getting you an invitation now. Great stuff, thanks Anna, I am sure you can disappear.
ANNA:
I will head off, there is only 10 minutes anyway. Cool, thank you. Have a lovely weekend.
JAIMIE:
Thank you and you, I am sure I will see you next week. Thanks, take care.
Hello thank you for joining.
SPEAKER:
Hi.
JAIMIE:
We have everyone in breakout rooms, is there anyone you would like to join a room with. I can show this list of rooms. If there is a specific person you would like to…
SPEAKER:
I need to have the list of presentations to match the names.
JAIMIE:
Yeah, if there is anybody in particular. Joseph in room three and Belinda in room three, both spoke… We have Shelley in room two. Grace?
SPEAKER:
May be room for, people do not change rooms.
JAIMIE:
I think so, but if there any reason you want to change rooms, you can come back. As we can make I am fine, so let it be…
SPEAKER:
Let it be room number four. Let me see how it goes.
JAIMIE:
You should see a message on your screen to join the breakout.
SPEAKER:
Yes, thank you.