Example. Eight. Um.
I'm delighted to be here. Thank you all for coming.
Um, and thank you for, uh, the generous invitation to come to Oxford.
Uh, and to all the people who have, um, invited me, who have supported this visit,
who have attended the various, um, activities that I've been involved in.
Um, and for the really brilliant, uh, occasion of Kafka's Metamorphosis and the, uh.
That's the work that it's done in the world, and the explication and amplification of that work, which has been just marvellous.
I hope everyone has had the opportunity to, uh, engage in some of the, uh, the various activities, uh, and certainly to see the exhibit.
It's it's really extraordinarily moving, uh, everything and exemplary.
And so I hope to be involved, um, in being able to carry all of this forward in some way.
And I'm delighted to be here tonight. Um, it's interesting that you're thinking and talking about lived experience.
So, um. I brought it. I prepared a PowerPoint, uh, as I do so that my lecture to you or my words with you this evening can be,
uh, brought to you in multiple modes of communication.
So you will have my voice. Some of us have access to my voice.
You will have, uh, me before you. Some of you have access to me before you.
And you will have access, of course, to this, um, slide deck, uh, which I will talk from in order to make my lecture.
And, um, I will make this slide or someone will make this slide deck available, uh, to you all as a PDF.
We will also have a recording made so you'll have access to that form of this event and the PDF.
Can someone in the universe can make that into a, uh, uh, I mean, the PowerPoint can be made into a PDF that can be made available somehow.
If someone would like to review the slides and the images that I'm going to present.
So this is exemplary of how we want to think about best practices,
to create the most accessible educational and communication environment that we can.
So, uh, it's always, as I suggested, aspirational.
And we'll see how it goes. Uh, but one, uh, of the practices that is useful is the practice, uh, description.
So I have included here, uh, after my title slide, um, a description of myself, uh, that I will read to you.
So this is Rosemary Garland. Thompson is a photograph of me here, which is really glamorous, I have to say.
Uh, and pictured here, uh, and I am a pale skinned, middle aged woman with silver chin length,
uh, straight hair, uh, reddish lipstick, always wearing black round glasses frames.
And I usually have a black jacket on, but I have a different coat on this evening.
And, uh, this photograph pictures me.
Uh, is a professional headshot that is taken in the, um, uh, there's a little bit more taken in the living room of my apartment in San Francisco.
So, uh, that's my introduction, uh, to myself.
Um. I see that we're losing the bottom of the slides a little bit, which is okay.
I can work with that a bit. But just to let you know that that.
Something that we really. It's there.
So, um, I wanted to think about, uh, disability as a word, as a concept and as a knowledge institution or a knowledge enterprise.
And since we are here in the social science division,
I wanted to focus a little bit on the history of disability as IT disability studies as it has been developed.
So it's an interdisciplinary enterprise, that is to say, many different, uh, knowledge, uh, enterprises have taken a focus over.
Centuries, really, but certainly over the last 20 or 30 years,
since the mid 20th century, civil and human rights movement have focussed on disability.
But I wanted to focus a bit on the development of disability in social sciences, in particular in sociology,
and then talk a little bit about law and then a little bit about my own work in the humanities.
Um, in terms of, um, cultural perspectives in the arts and culture.
So, um, I will move through by talking a bit about, uh, as I said, the development of disability in sociology.
So many of you who are sociologists are aware of the transformation of knowledge, if you will.
Uh, that is called social constructivism. So social constructivism, in case you don't remember very clearly,
is a premise that says that meaning is not inherent in an object or certainly in a body.
That meaning is established in the relationship between bodies and things in the world.
And this is very important for disability, because the way that we understood previously and the way that is sometimes still understood disability,
is that it is a problem, often a medicalized problem or a medicalized condition,
often a diagnostic category that is in the body of a person understood as disabled.
But what social constructivism has done and what um, sociology, uh, and disability in sociology has done,
is taken the disability out of the body and put it into the social relations, into the environment.
And they've done that through the enterprise of social constructivism, if that, um, is a meaningful category to you.
And one of the leaders of this, one of the beginnings of disability studies, um, in, uh, the 1960s is a, uh, sociologist,
uh, named Erving Goffman, and he writes a nasty little book called Stigma Notes on the Management of Spoilt Identity.
And Erving Goffman, I put the the, uh, cover of this up here when I read stigma.
Um, it was like I've written a little piece about that, but it was as someone who lives with the kinds of blemishes,
uh, that, uh, Goffman talks about in this, um, I have written that it was like viewing roadkill.
You you're horrified by it, but you can't take your eyes off of it.
So, uh, he established really, uh, a language of stigma, that is to say,
social branding that takes place within social relations, uh, of, uh, people who bear stigmatised markings.
So the markings that, uh, Goffman talked about are the markings that we think of as disability, these stigma, this,
these brands, but also the markings of, in particular race and other kinds of categories, um, of social deviance.
So in some sense, disability studies in sociology comes out of deviance studies.
But it does a really marvellous thing in redefining um disability by providing and this is sociological language, the concept of models.
So there are a number and I've listed these, I'll just name them.
But if you want to go back and look at these, uh, you can see this is a kind of definitional slide.
But sociology has given us what we think of as models of disability.
So there is a moral model of disability that historically was understood as the idea of interpreting these human variations as forms of some kind of,
uh, moral violation as punishments for doing something terrible in the world.
Um, and of course, that model is an older model that we would want in terms of social justice and inclusion.
To move away from the medical model is another way of understanding disability.
And that is, of course, to understand disability, as I mentioned, as, um,
a kind of medical problem or a form of medical or medical scientific pathology.
So again, that's a model that gets pushed away with social constructivism.
And then what sociology gives us is the social model.
That is to say, disability is a human variation that's produced by the interaction of impairment.
This is a way that some people talk about what we call disability and.
And the social environment. And that's really the place that disability studies, in an interdisciplinary way,
has stayed with, um, over the many years since, in the 1960s, Goffman is writing about stigma,
and then many sociologists from the UK and from the United States, um, bring in what we call the social model of disability that has been extended,
uh, into what I sometimes call the cultural model or even the material model.
But this idea of models, cultural model being that not just social relations, that and I'll talk about this later,
but cultural products such as performance and art and, um, uh, objects in the world also make disability as representations of disability.
So that's a different kind of a model, a different kind of understanding.
And I'll talk more about that.
And then finally I have offered the term the material model, which is to say that we make and unmake disability by the design and built environment,
the way we build the world that we live in together, literally out of concrete and wood and rebar and ramps.
Um, and so that model, all of these models shift disability out of the pathological body and into the built,
uh, the built environment, the social environment, the ideological environment, the political environment.
And that's where we are now with, uh, with disability.
So I wanted to honour that. And one of the most important elements that I wanted to bring in a little bit of philosophy here, um,
in this entire enterprise that approaches disability a little bit differently is what we might call or what I call the critique of the normal.
So there's much that is written about the idea of normal as an historian sized category, as something that happens in the world.
And I would suggest that the idea of normal, which is an ideological concept, it's a statistical phantom.
That's a term I like a lot, and it's an aspirational ideal.
It's been defined, I think, in many ways, but very well by the, uh, philosopher, um, Ian Hacking, uh, in his book The Taming of Chance.
And I have a citation here, and he says that normal as an idea is one of the most powerful ideological tools of the 20th century.
I think that's a very perceptive idea to think of its normals and its enforcement, which is a term that's been used before, is an ideological tool.
And Goffman has something to say about normal as well.
He puts forward this figure of the unblemished, um, stigmatised individual that I really like to quote,
he says, the only one complete unleashing male in America.
He's an American sociologist, is a young, married, white, urban, northern heterosexual, a Protestant,
father of college education, fully employed, a good complexion, weight and height, and a recent record in sports.
This is very golf mania, and, if you will, ironic uh, and of the 1960s.
But really on point here in terms of how this enforcement of normalcy, uh, moves forward.
And I'm showing you these anthropological figures that the, um, uh, caption is falling off a little bit.
I think they're designed in the late 19th century by Dudley Sergeant.
I don't know who it is, but these are the ideal figures.
So they are literally the embodiment. They're statues of what I have called enormous.
Uh, and that is these, these, uh, normal people that are the aspiration for so many of us.
And we receive that mandate to normalcy.
We don't elected it. It's part of our received tradition, and we live it out.
And we each establish a relationship in with normal and of course, a relationship with abnormal over our lifetimes.
So this is in general what I think, uh, the social sciences and in particular sociology has contributed.
So I wanted to talk a little bit about who is disabled.
So we talked about what is disability, who is disabled and to draw in that from uh, the law.
So I'll talk a little bit about the law in a. Again, a very brief way, and I'm going to offer here a definition.
So my own definition of who disabled people are who's disabled.
So disabled people are a politically created, important group of qualified individuals.
You have to qualify to be disabled who are protected against discrimination by civil and human,
but let's say civil rights legislation and who are accorded the right to request reasonable accommodations.
This is generally what the civil and human rights movement gave us in terms of legislation.
It's a little reductive, but that's the essence of it. And I'll give you a little bit of a history here, which most of us are familiar with.
I'm showing a picture of Eleanor Roosevelt holding up the Universal Declaration of Human Rights from 1948,
which, of course, comes out of the Holocaust, comes out of the recognition that science and research did things to people in the Holocaust that
were unethical and that people need to be protected and they need to be protected in many ways,
but they need to be protected, particularly by giving their consent.
Consent should be research subjects, but consent for many other things.
So consent is an important implement of liberal orders, Liberal modern orders.
And this is Eleanor Roosevelt, who begins this more or less in 1948.
And of course, is followed by the entire disability rights movement and the legislation that came from this.
I love to show this image. I showed it the other day. It's a photograph of black and white photographs from sometime in the 1970s.
And it's of a protest, uh, probably in New York.
Somewhere downtown. There are people marching in the streets, and they are not just marching in the streets, they're rolling in the streets.
So there are people here in wheelchairs. There are people with crutches.
There are, uh, people with, uh, medical conditions, small people, big people,
all sorts of people who are marching for disability rights in this entire intersectional movement that takes place.
And they're holding up a banner that, in my view, says it all.
And the banner says injustice anywhere is a threat to justice everywhere.
And it's a quote from Martin Luther King Jr. So I think this illustrates the impulse, uh, as I said, what is sometimes called the intersectionality,
uh, the interdependence, if you will, of these rights movements that took place in the mid 20th century.
And pulling them together, I think is an important, uh, work for us.
And so from these legislative and many legislative initiatives I'm showing here images of just a few of these,
there is the Equality Act, your Equality Act of 2010.
There is the Americans with Disabilities Act from 2009.
Uh, there is the convention on the Rights of Persons with disabilities, the uh, un Crpd.
I can't believe that rolls off of my tongue, but I got there from 2006.
The UK, uh, is a signatory to this treaty.
The US is not we just an interesting thing we could talk about later.
Uh, but these implements, these covenants have brought us.
So they've brought us into this room. They brought me into this place.
They brought many of us into this space. And so that work in law and legal theory has been extremely important.
And I wanted to finish up here. I don't know how much time I have, but I'll show you some of my pictures with cultural disability studies,
which is what I tend to do from the humanities perspective.
And there are some premises I want to offer here about cultural disability studies.
Uh, three of them. One of them is that disability is central to all human experience.
So I want to and I think the humanities does a very good job of universalising disability by saying.
It's everywhere all the time, and it always has been and always will be in all of human experience.
The second point that we want to make in cultural disability studies is that disability shapes human lives and relationships.
So it's it's the shapes that is important here.
And the third thing and this really comes from disability bioethics that I'll try to talk about a little bit later.
But it also comes from disability art and culture.
And that is that disability does not necessarily reduce quality of life.
And I'm specifically using quality of work. We can talk a little bit about that.
That's an important concept. Um in.
Healthcare, ethics and um in disability bioethics, which we can discuss a little bit more fully.
And I want to emphasise what I tend to work on, uh, in terms of representation and that is story or narrative.
Um, so I would say to sum up the work that I do and the work that many of us do in these fields,
in the humanities that look at disability and that is that disability and illness stories,
narratives are an opportunity to explore, to redefine and to make new stories about what it means to be human.
And so I want to emphasise that what this does is that it's generative.
It makes things. It's not against something, it's for something.
It's stories or as as, uh, we were saying it's lived experience.
And lived experience narrated through novels, through stories, through texts, through images, through art, through culture.
And I'll try to give you some examples of some of these I'm showing here.
A painting by an artist that I want to talk a little bit about.
It's a wonderful painting. It's a painting. Um, and the text is on off a little bit.
It's by, um, uh, an artist named Katherine Sherwood, who, uh, teaches at UC Berkeley and Katherine Sherwood about 25 years ago, had a stroke.
She was a successful artist. And the stroke, as strokes often do, paralysed her.
Right, uh, arm. And she was right handed.
So, uh, she needed in order to continue her art practice, to adjust her art practice to the new body that this medical event gave her.
So she began to start painting with her left hand instead of her right hand.
And this transformed the relationship that she had with her art products, with her canvas.
And she literally paints on canvas most of the time.
Uh, but it also transformed the content of her art.
So this particular painting, which I don't have the exact title of,
is An Illusion and Allowing used to wind to a manet painting, um, that many of you may be familiar with.
So many is the artist that paints this odalisque.
This is a manet odalisque that has been revised by Katherine Sherwood.
And so she has the same posture for this same embodied and therefore recognisable to those of us who have access to the Western art tradition.
We know what's going on if we recognise, uh, the posture of this painting.
Uh, but she has inflected this painting with something different.
She's changed it. She's put a leg brace on this odalisque, uh, much like the leg brace that she uses in her own life, but more spectacularly.
And she does this in everything. I would urge you to go to Katherine Sherwood to go look at her website.
She has changed the face and the head of this by superimposing an X-ray image of her own brain, which, of course,
if you have a stroke, your brain becomes the centre of your representation in the medical treatment that you have.
Uh, so she has taken these images of her own brain, turned them into these odd, uh,
sort of semi grotesque faces, and put those on to almost all of the artworks that she does.
So you can always find, uh, one of Katherine's brain images, brain x ray images in any of her artwork.
So this is an opportunity to redefine one's life, to redefine, in the case of Catherine Sherwood,
an exemplary opportunity to make a whole new set of cultural products based on her experience of living with disability.
So how much more time do we have? Five minutes.
Okay, so, um, I wanted to go through a couple of other examples of how we find disability everywhere.
So I'm showing an image here of Sophocles Oedipus, which is the founding narrative, uh, of Western culture.
And to suggest you may recall that, uh, Oedipus, the story begins with disability.
He's got a bad foot and ends with disability. He gouges out his own eyes and he is blind.
And so this bookending of the life of who he is, I think is exemplary, of course, of my point that disability is in every life and shapes every life.
So many other things. Um, I'm showing a picture here of, uh, John Milton, uh, and the cover of Paradise Lost.
John Milton, of course, is blind when he writes Paradise Lost, just as Beethoven is death when he writes his most important symphonies.
Uh, there are a thousand examples of this.
Um, I wanted to show a few of the, uh, cultural products that are particular to the UK.
So I have some images here. This is, um, one of many, uh, non-disabled actors who achieves virtuosity by playing the role of a disabled character.
So this is Daniel Day-Lewis playing Christy Brown in, uh, the movie My Left Foot, which is from the 1980s.
Uh, we have another I wanted to show this one. We have, uh, the really important, uh, movie Gattaca, uh, which is, uh.
Go see it. It's about 25 years old and it is so current, I.
I couldn't believe it when I viewed it just a year or so ago.
And of course, this is, uh, where we have, uh, the handsome and young, uh, Jude Law here playing, uh, a disabled actor.
So what what is being called for, of course, now is disabled actors playing roles that are often other than disabled roles.
And so we have some more contemporary actors.
I'm showing here an image of Matt Frazier, who is an English actor, uh, who has unusual arms, uh, that were formed in formed by,
um, uh, the drugs solidified and, uh, I'm showing a picture of him in, uh, American Horror Story, uh, from 2014.
But he's he's really an actor who's come into his own.
And I would suggest that you might want to try to look at some of Matt Frazier's work because he really has, uh, quite a significant disability.
And it it'll be a very interesting challenge to see, uh,
how much the willing suspension of disbelief can operate to have Matt Frazier, for example, play hamlet.
So we'll see. Um, I wanted to show you as well.
This is one of my favourite images. This is, uh, the late, uh, dancer, English dancer named David Toole.
David is a legless dancer, and I'm showing him here in a beautiful photograph by Nick.
Night. Maybe, um, wearing a costume designed by Alexander McQueen, the fashion designer.
And it's, um, a kind of fan skirt.
Um, and David Tool is dancing here, um, with on his arms rather than his legs, because, of course, legless dancers don't dance on their legs.
They dance on wheels, they dance on arms, they dance on crutches, they dance on lots of things.
But disability dance has given, um, uh, us an entire new movement, a vocabulary that is possible only.
Through the bodies of people and the costuming that comes along with disability.
And so this is only one example. Uh, this is, uh, Alice Shepard, who is a wheelchair dancer, an English, uh, woman, uh, dancing with Laura Lawson.
And they are wheelchair dancers doing, again, um, developing a movement vocabulary only possible with the costuming of wheelchairs.
Just as David tools movement vocabulary is possible only because he is a legless dancer.
So this is a very generative, uh, art form.
I'm going to skip over, uh, some of these images. This is a photograph that's in the welcome collection of, uh, by a woman named Alexa Wright.
And she has produced photographs that are digitally created, uh, of people with phantom limb syndrome,
which attempt to, um, uh, represent the people with phantom limb syndrome and their own experience of their own body.
So I don't talk a lot about this, but you can have a look at it later.
Um, there was a very famous, uh, sculpture called Allison Lambert.
Uh, nude. Naked maybe. Um.
I'm sorry, I don't again that we've lost the, uh, caption, but that time, that was in Trafalgar Square for a number of years, around 2005.
And Alison Lapper is, uh, an armless woman who was pregnant in this, uh, with unusual legs in this, uh, sculpture.
And it stood for, uh, many, many years, um, in Trafalgar Square, uh, prompting really interesting questions about,
um, uh, families and, uh, reproductive, uh, questions of reproductive justice and reproductive ethics.
And of course, uh, this is a photograph of the other most famous armless woman and who lives in Paris.
And that's the Venus de Milo. Um, I wanted to show briefly, uh, a beautiful, uh, prosthetic design on the right, done by, uh, again, a, um, uh,
a woman, um, in London who runs the Alternative Limb project, who has designed prosthetic limbs that are to be seen.
This is a beautiful limb with, um, flowers and vines on it.
Uh, of course, prosthetic devices in the past were thought to be, uh, inappropriate for public view.
But since they have evolved, um, in, uh, in the wake of the entry of many more disabled people into, uh,
public places where we have never been before, um, showing one's prosthetic equipment proudly, um, has become a very important practice.
So this is Alexa. Uh, right. No, no, that's, uh, that's the wrong person.
Um, the alternative limb project. Beautiful.
Uh, limbs. And you can go look on on the website of the Alternative in project, because you can see their bedazzled and glorious things.
And on the left is shoe hair, who is a climber, mountain climber.
And he has designed a variety of high tech, uh, bikes.
And I love this picture of him with this fancy legs sitting in this, uh um uh um, and so the designer of this kind of chair space is very modern.
Uh, not quite this, but someone can help me out with this.
Who is that? Is that what it is? Jacobsen? Thank you. I'm kind of a little slow on that.
Um, I want to end with two images, and that is to show you, uh,
some of the work that's been done in disability bioethics and showing an image here of the,
uh, English bioethicist, uh, Jackie Leech Scully, who has, uh, written a really important book called Disability Bioethics.
Um, and she draws from, uh, care ethics, which is a, uh, important, uh,
element of philosophy and ethics that has been quite developed and is defining care ethics here in terms of disability.
So I would suggest that, um, if you're interested in, uh, disability bioethics, a good place to start is with Jackie Reach Scully's book.
And, um, I'm offering a definition here of care ethics.
And that is that care ethics comes out of feminism.
Uh, asserts that there is moral significance in the fundamental elements of relationships and dependencies in human life.
So this is a very important element from, as I said, philosophy and from, uh, feminism.
Uh, that's been quite well developed in what we think of as disability bioethics.
So that care ethics, um, is one element of disability bioethics.
There are many, uh, but I want to end with the two.
Um. With two.
Not that two, but two very salient bioethical issues that are present, uh, now in our public,
uh, conversations about how to regulate, uh, uh, medical practice and policy and treatment.
Um, and that is the, um, uh, issue of selective testing and selective termination, that is to say, um, how we think through, uh,
the selection, uh, and the testing of um, uh, foetuses and embryos in terms of, um, uh, which people are born and not born into the world.
This is a very controversial and very, uh, fraught, uh, set of questions,
but it's one that is very, uh, prevalent and salient within disability bioethics,
because, of course, one category of being that is particularly affected by, uh, these reproductive practices is people with Down's syndrome.
So I'm showing here, um, an image of the American sculptor Judith Scott, um,
who, uh, uh, is probably one of the most well-known, uh, American sculptors.
Um, and she is a person with Down's syndrome. She died in 2005.
The person born with Down's syndrome lived with Down's syndrome.
Uh, didn't she was non-speaking person.
Uh, but she wrapped with fibre, which she began doing in a sheltered workshop, basically, uh, where she was, um, uh, working or she was.
Brought to, uh, um, California. And her work has become extremely important.
So she's made important artistic contributions to the world.
And I'm showing a cover, uh, story from The Atlantic in 2022.
I would highly recommend. It's really an interesting story about, um, the announcement, um, in Denmark that, um, down syndrome had been eliminated.
Um, and this, um, kind of story brings forward. I think one of, you know, whatever one's, uh, opinions are about this.
One of the most, uh, challenging questions that we have to face in bioethics about the,
um, the convergence and the conflicts of, uh, various interests and rights.
And so this is what's, uh, very complicated about bioethics.
So that's one of the bioethical issues that has a great deal to do with, uh, disability at this time.
And I will end with the other, uh, another issue, um, that, um,
is very salient right now in terms of practice and legislation, and that is the practice of euthanasia.
And, um, one of the most important, uh, interventions, if you will, or commentaries on,
uh, euthanasia comes from, uh, a British actor, uh, whose name is Liz Carr.
And I'm showing an image of this car here, um, uh, in, uh, BBC.
It's called Silent Witness that maybe some people know.
Anyway, this car was in it. Or is in this. We don't get to see BBC in the US.
And anyway, so this car was in this, and this car is, um, very much of an anti euthanasia activist.
And this other image, um, I quite love I've known this car for a long time.
She's done a lot of great things.
She wrote a musical called Assisted Suicide The Musical, and she went on about ten years ago, something she called the Euthanasia Road trip.
And she's got a t shirt on in this photograph, um, of the show.
She's really she's a comedian. So, uh, she's got a t shirt on that says Euthanasia Road trip,
and she looks terrified and she's in a wheelchair out in front of Dignitas, which is a euthanasia centre in Switzerland.
And, um. So, anyway, I will end by giving you this car.
She's got a new documentary, which I haven't had a chance to see, that I'd recommend to, um, to everyone that I'm told is quite active, so thank you.
Grocery. Thank you so much. That was absolutely spellbinding.
Uh, lecture. I have more pictures. Uh, I did on for the social science division, taking us from ballet to sculpture.
Why do I need to be made from from from ballet to sculpture, from literature to art?
Uh, and you were drawing on philosophy and law and theology.
Very interdisciplinary arts and sciences.
Mostly. That's what I said. Thank you very much, Andres.
Um, that was me. And I thought rather than me giving a sort of formal, uh, response shouldn't be better to have more like a fireside conversation.
That's for today. But, uh, we thought we might post.
Um, but I wanted to start speaking up the idea of the critique of the law and a very powerful practice.
Um, and it also comes with disability pricing, which is something that seems to be growing within the disability movement,
that then, rather just by seeing the response of a disability,
by trying to say, look, can we remove disability or make accommodations so that disabled people can reach the same level as able bodied people do?
I find pride in disability itself? Do you have any any thoughts on that?
Well, I think that, um, this transformation of the built environment, um, has.
Worked together with the transformation of the, uh, and the judicial environment in really important ways so that.
In order to. Desegregate people with disabilities.
You had to change the built environment.
You had to make it possible, say, for the desegregation of schools.
In other words, the integration of schools for a disabled person to go to school.
Uh, you had to make it possible for them if they were wheelchair users or a blind person or a deaf person.
You had to make accommodations to do something to change.
It couldn't be the way we did other kinds of of integration.
Uh, I don't want to say it was simple to simply open the door and say, oh, women can come in, but.
But there was something fundamentally quite different about that.
Um, and so when the built environment was changed, people with disabilities started being able to be in places that we had never been before.
And so the non-disabled people were sitting next to disabled people.
You know, in your classroom in a way that that hadn't ever happened before.
Uh, non-disabled people or people with certain kinds of abilities would be sitting on a train or a bus with a disabled person,
with somebody with a guide dog,
or someone with a with a white cane or someone in a wheelchair or, uh, a variety of other different, uh, kinds of disabilities.
Uh, people with neurodiversity, people with disabilities who are out and about in the world.
And that changed, I think, who we imagined ourselves as sharing the world with and really fundamental ways.
But that was not it was necessary to rebuild the environment, built environment to to do it.
And we're still struggling with that all the time. Absolutely. Yes.
So I love that time getting that door locked in there.
Yeah, I remember reading I don't know if you've read Andrew Solomon's, but oh my God.
And I would recommend that to anyone. It's a wonderful, extraordinary passageway.
He talks about visiting a centre for people with death and where we're using Simon, which he has hearing himself.
And he explains that watching people using sign language after about ten minutes or so,
my goodness, you can communicate as effectively in sign language as you can by speaking.
This is remarkable. And that is that after half an hour, it's suddenly struck me that perhaps sign language was a more effective means of language,
and he suddenly realised he'd been assuming he was looking at where could
disabled people be as good as able bodied people in the British public space?
It just been thought that actually maybe these forms of communication were more effective, but normal could be better.
Exactly. And that there are cultures that are built.
Uh, I mean, obviously, um, sign language is not obviously sign language is is looked at as a legitimate language,
um, as a, uh, a language that comes out of a culture and sustains a culture.
So that recognition, um, is extraordinarily new.
Um, in the same way that, uh, different communities of people with disabilities have come together.
Uh, the neurodiverse community, that's the best word. I think that's come to us in a long time.
Um, it's it's clear, uh, it's capacious, um, and it's, uh, it's positive.
I think I'm not also accepting this, this critique of normality, but we would see the normal,
normal being able bodied as being good because that's self sufficient.
Uh, that, that a rational, uh, I would say, um, under certain kinds of good things today.
Whereas what you're talking about, the ideas of our community shows us that perhaps recognising disability to a crisis to to work together,
uh, so we could work as community sort of teams. Um, and this assumption that the idea of self-sufficiency, this is necessary.
That's where we start. Well, exactly.
I mean, the this is what is been important about the sociological model of relationality that has, in some ways led us to the idea that, uh,
our individuality and our, our, uh, our beings are formed through relationship, not through, uh, what is sometimes called possessive individualism.
And so the idea that, uh, people with disabilities need to work with other people together,
I think, has been, uh, the, the, the kind of codependence that is often enacted, uh.
Between people with disabilities and people with disabilities and so-called non disabled people at the beginning of life,
at the end of life, and in the middle of life, I think has become a really important model for.
Questioning, uh, not just the characteristics of the individual that Goffman.
So ironically, I'm not sure he was being ironic, but I was, uh, described, um, where we're able to understand the limitations of that model.
Uh, uh, not just model of being, but model of being in the world with others.
Uh, we could talk the ages, but I'm sure this questions in the.
Well, I should say that I neglected to say something that's important, and I, uh, and that is that in describing myself,
I neglected because I was thinking about my headshot to explain to you that I have.
Some of you have figured this out already. I have unusual arms and hands.
Uh, not unlike Matt Frazier, only his hair. Even more unusual.
Um, and, uh, therefore, that that makes certain limitations and creates certain limitations and barriers for me, for sure.
Um, and um, but it when I was younger and going to school,
I was not kept out of school by that in the way that someone using a wheelchair or someone with a cognitive disability might be kicked out of school.
So I was able to, uh, to go to school. But there are still incredibly significant barriers for someone who, um, uh, doesn't manipulate a keyboard.
Um, and so it's, uh, only possible for me, for example, to be in this room to continue to go to school and to continue my job,
uh, because I was able to get access to technology that works around the keyboard.
So, uh, that's a fair thing for me to bring forward.
And, and, of course, all of us benefit from that kind of technology as we're all learning when we talk to our phones.
So perhaps now I can ask you if there are any questions from the audience.
I know we have people online and we'll be checking in on them shortly.
Um, but please, are there any any questions anyone would like to answer?
We've got one in the front. Um. Hey. Thank you very much indeed for that very inspiring, uh, talk.
And please say your name. Uh, sorry. My name is.
And, um, uh, so, um, uh, you emphasise the built environment and towards the end now, uh, you're talking about a certain kind of society.
And, Johnson, you mentioned a certain model of personhood.
So on the one hand, and this is writ large in the euthanasia debate, for example, you have,
on the one hand, an idea of the individual who is completely in control of their body and faculties.
And it's a it's a notion of an autonomous, self-sufficient individual, as you were saying.
Um, and on the other hand, we have, uh, what, uh, Liskeard that was depicting, um, a society where the presence of uh,
disabled people is absolutely essential, uh, in order to make that society more caring.
So in a way, it's not about just, uh, disabled people.
It's about this is the kind of society we live in and want to create.
And so it's the built environment, as you were emphasising the very fact that lots of people are now present around us, uh,
who would otherwise have been somehow getting from view that the very presence of those people could,
in fact, be the driver to make a better and more caring society?
Exactly. I mean, it it says. A relational situation that when you have a designed and built environment that
recognises that all human beings need care in order to flourish throughout their lives.
Um. And that it is the built, designed and built environment that provides the conditions for that care to take place.
And we want to think about care in the very broadest sense.
Um, one good example, of course, this is perpetually drawn up because the, um, the example of the kerb cut, I think that's what you call it here.
Right. The kerb cut. So, uh, pavements probably as in other words, when, when the sidewalk moves into the street.
Uh, we in the US call that a kerb.
And there's a cut in the kerb so that one can, uh, traverse from the sidewalk across the street, uh, without encountering a barrier.
And this becomes, uh, an example.
Uh, I can explain it. So in the US and I mentioned this the same year when the laws, uh, began in the 1970s, 1960s, actually late 1960s.
That said, you will make public spaces accessible for people with disabilities.
The kerb cuts needed to be put in.
And this needed you needed to take concrete out and put concrete in.
You needed to really do something with a jackhammer in order to change.
They needed to put money into it.
Um, and so these kerb cuts were thought to be a big investment, an unfunded mandate that would only help a few people.
Uh, just, you know, the people who are wheelchair users and there aren't any wheelchairs in or out in the public space.
So the argument went, why would we need to make these?
And of course, it's circular. There aren't any wheelchairs out because there aren't any kerb cuts.
But anyway, same thing with elevators in, uh, in, um, uh, public transportation, uh, subways.
Uh, and so they said you will put these kerb cuts in and the kerb cuts went in and suddenly you have a transformation.
Uh, you have people biking, you have people using skateboards,
you have the invention of rolling suitcases, you have the, um, invention of what I call SUV strollers.
Uh, you know, because the strollers, the only strollers that would work where those little umbrella folding things.
And now you can you can have a stroller with ten kids fastened on machinery because you can roll, uh,
you know, through the public thoroughfares, um, and you can roll onto trains and buses and so forth.
So that kind of wheeled access, uh, to public transportation has benefited all of us.
Um, and that's the whole point, uh, with disability access is that the society is, uh,
that everyone benefits from these changes when they may be imagined as an investment that only serves a few at the beginning.
But you have to make that argument over and over and over again. And I see this one with there.
Any questions on the line? No, we haven't the questions.
They sort of. Like that was absolutely terrific.
Uh, so many things to think about. If you had a sort of superpower wish, the things that you would change and do.
Um, I'm particularly interested in the American system versus the British system,
particularly at the school level, through primary school, through, um,
in the context that I've observed with my own children at a school, which, um,
was very good at having a classroom where there were a range of different, uh, you know, experiences and abilities.
Um, and that marked those children as they went through to become young adults.
I look at the Paralympics and the effect that that has on a massive scale of changing people's outlooks.
So, so there are these experiences local, but also one sees it in the context of Paralympics.
I'm just in how when you're trying to balance particular needs, as you say, access to keyboards and those sorts of things.
Whistle comedy specialists, um, needs versus the desire to normalise the range of normality,
the bulk of distribution of abilities which can be done so well through that just experience and very young through.
So that's just how you grow up, is knowing that your experience and what the challenges are, some people and the abilities of others.
How is it in the USA and what would you do to try and meet that real need of changing people's minds and hearts so that this doesn't become an issue?
We don't have to have lectures like this, all right? Because that's the mark of success.
This is the particularly in society,
there are still some very difficult things that need to be addressed that might require taking people out and having specialists,
um, you know, assets to support what is needed.
So it's a slightly rumbling question of how preventable.
I think that what we need is a more capacious understanding of the work that the word disability does.
Um, uh, it's still a word that is a little sticky that people are the we haven't had enough disability pride,
if you will, in the way that I think the, um, maybe the other.
Rights movements or inclusion movements, whatever you want to call it.
Um, and that I have ever accomplished.
Um, I think that, uh, um, I think there is still a reluctance, I think, uh,
amongst many people to, um, embrace the term, but also to, uh, acknowledge.
The, uh, their entry into that category.
Uh, and it's in part because as an identity category, it's, it's not as clear.
We, we have a much clearer understanding of what racial identity categories might be or gender identity categories,
um, because they seem to us to be more stable and in experientially, in some ways they are more stable.
The disability, identity and disability beingness in the world.
People move in and out of it all the time so you can be.
Superman, Christopher Reeve. Um, one moment and literally a half an hour later, you are quadriplegic.
Um, people, people move in and out of disability identity.
So it's porous and it's unstable. Um, and, uh, also, uh, Andrew Solomon is good about this.
Far from the tree. Read the book. See the film. Um, um, identifies that, uh, most disabled people are not born into families.
Uh, that where there are other people with disabilities.
I mean, that's not always the case, but, um, that's quite different from, um, how we imagine racial and ethnic identities very often.
So, um, in some ways, these experiences and ways of being that we think of as disabilities are quite foreign and alien to most people,
and they're not narrated very, um, positively or or frequently and identified as to, say, disability very often.
So, uh, I think getting the word out there more, getting more disability studies, uh, across the curriculum,
this is one of the things that's been really good about interdisciplinary disability
studies is the idea that you can teach disability as part of what we do in any corpus.
Um, so integrating disability across curriculum, uh, across community.
Getting the word out there, getting, uh, you know, there's all sorts of things one can do to create awareness,
basically about, uh, disability inclusion, disability justice, disability culture.
I think the disability culture, uh, and arts part is, is really good because narrative,
you know, it comes close to the human, uh, it's close to the quick of human experience.
You go see a movie or you, you see an artwork or you, uh, you see disability lived.
Um, that's more that that the statistical knowledge.
I think that might be a wonderful place to start.