Nothing about us without us
In this episode
This week we're talking about disability activism: its past, present and future. Disabled people are routinely excluded from society, despite making up 15% of the population. How has disability activism shifted people's attitudes and perceptions? And how can we transform our society so it's fairer for everyone? To find out we speak to disability justice activist Anna Landre about why it's not possible to legislate prejudice out of existence, we also talk to Christoph Keller about his new memoir and to Ruth Malkin about the People's History Museum's new exhibition celebrating the history of disability activism.
Transcripts of all the interviews can be found below.
Guests
Anna Landre, Disability Justice Activist and Research Fellow, UCL (@annalandre)
Christoph Keller, Novelist, editor and playwright. Author of ‘Every Cripple a Superhero’
Ruth Malkin, Community Co-Curator, People's History Museum (@PHMMcr)
More Info
UCL's Global Disability Innovation Hub
The Shaw Trust Disability Power 100 List 2022
Buy Christoph's book 'Every Cripple A Superhero'
Islam Alijaj's Twitter (Swiss politician)
Visit the People's History Museum's Exhibition: Nothing About Us Without Us (until October 2023)
Get online support and advice from Scope
Interview Transcripts
Anna Landre - Disability Justice Activist and Research Fellow, UCL
Geoff: To start the conversation, we are joined by Disability Justice Activist and Research Fellow at UCL, Anna Landre. Hello.
Anna: Hi. Nice to meet you guys.
Geoff: You are currently working on a PhD about fixing the gap between what disability and access laws say, and then the way that plays out in the real world. And that ties in with this idea of a social model of disability: that many disabilities wouldn't be disabling if the world that we live in wasn't set up by and for non-disabled people. So, I wonder if we could start by introducing that as an idea. And if you could give us a couple of examples of how that plays out that non-disabled people might not have thought about.
Anna: Absolutely. So the classic example is that I, as a wheelchair user, have a lot of trouble getting around the world as it is constructed. And you can look at this two ways: you can look at it through the lens of what we call the medical model - which is that there's something wrong with my body, that my body has to be fixed or cured or healed some way, so that I can walk. Or you can look at it as actually the environment doesn't accommodate the full range of human diversity that we see. Actually, we should be building ramps as well as stairs so that everyone can get into buildings, and the problem isn't my body, It's the way that we've constructed this world in which we live, and that's the social model.
Geoff: There are laws, legislation in place designed to even the playing field, so to speak. How is that not working? And something I noticed - I don’t know if it's a fatuous thing to say - but when my son was in a pram, I became very aware of how moving around London is really difficult for people using prams, but also more pertinently wheelchair users.
Anna: Absolutely. And it's so funny, a lot of the times when I do talk to people about this, the way that they feel able to enter the conversation is as a parent who had a pram or as a person who had maybe a sports injury and was on crutches for a while. And that can be kind of an entry into this thing that, as you say, is often invisible…
Geoff: And I don't mean to be patronising saying that. It's just something that opened my eyes a bit.
Anna: No, not at all. I think that's very fair. And what you're referring to is what I kind of call the disability law implementation gap. Which is that we have these beautiful standards that say, you know, whether it's in the Equality Act or the Americans with Disabilities Act, or any other number of laws that basically every country in the world has. They say things like: disabled people have the right to equal access to space, to education, to every aspect of our society, but you don't see that reflected. You know, here in London where I live, I still go to Soho and can’t access what feels like a third of the pavements. So you have these beautiful laws that unfortunately often only exist on paper. They're relegated to words on a page rather than being implemented. And I kind of approach this as a wheelchair user most often through physical space, but disability is a really broad community. It's not just wheelchair users, it's also people who are deaf or blind or are autistic or have psychosocial disabilities. And we need to look at this broadly to see how we're including or not including everyone.
Ed: Do we have a sense then, Anna, in the British context of the scale of the gap between the legislative intent and the reality?
Anna: We don't, and that's one of the biggest problems and something that in my PhD, I'm trying to collect data on. Because I think too often people assume, ‘oh, we made the law, we're done’. And that's not what happens. This lack of monitoring and evaluation, this lack of enforcement is what causes this gap. And I think a lot of it has to do with kind of culture and attitudes. Of people knowing that no one's coming to check on whether the law is being followed.
And you know, there's this famous story. There was a post office in a Latin American country that's now escaping me. And these researchers came to the post office, and they said, ‘You have steps on the front. You're supposed to be falling the law and put a ramp on there.’ And he goes, ‘oh, well why would I do that? Disabled people don't come here.’ [Geoff laughs] It's like, well, of course the disabled people aren't coming here. They can't get into the damn post office! And so I think there's a lot of work to be done around changing culture and awareness as well as kind of this policy, the regulation of these laws to make them real in order to get the world we want to have.
Ed: I think Geoff may have described you at the beginning as an activist for disability justice. Talk to us about what that means and also maybe how it's changed over time to intersect with tackling other forms of injustice.
Anna: Absolutely. So the disability justice movement emerged in the early 2000s, amid disability activists in the US who kind of looked at this earlier movement called the Disability Rights Movement and saw some shortcomings with it. Most notably that it was pretty homogenous, largely made up of white men with physical disabilities who were pretty affluent and that only reflected kind of one part of this community.
And additionally, they looked at what the Disability Rights Movement tried to do: which was pass laws, give people rights. And they said: the law is not enough. You know, laws are necessary, but they'll never be sufficient to get rid of prejudice. You'll never legislate prejudice out of existence. So what we have to do is what I kind of nickname ‘culture work’, changing attitudes, talking to people, finding ways of making the law real. That might still have to do with policy. It's also, you know, making it easier for disabled people to be in leadership positions, because so often this inaccessibility, this inequality is cyclical. You know, disabled people are isolated. We're forced to stay at home because we can't get around properly, whether that's physically, communicationally, and that makes us invisible, which makes society not designed for us. So it's this cycle of inaccessibility in its many forms, and disability justice looks at the ways in which we really have to go beyond legislation in order to change that.
Geoff: And what are some of the campaigns, when you think back on your own activism, that perhaps you're the proudest to be a part of?
Anna: I work with an organisation called the Partnership for Inclusive Disaster Strategies, which essentially we are trying to address the ways that disabled people are left behind in an emergency situation, and we're often treated as kind of expected and acceptable losses. As, you know, those people just aren't going to make it. They're not going to survive the fire, the hurricane, the war. And so it's really not even worth including them in the plans for, say, it's evacuation or whatever it might be. And so most recently amid the war in Ukraine, I've been working with a Ukrainian DPO called Fight For Right - DPO is a disabled person's organisation - to evacuate Ukrainians with disabilities being left behind, and that's been an amazing experience, a really, really difficult one. But, we found that again, all these lofty humanitarian standards about rescuing the most vulnerable and centring those most in need were just not being carried out on the ground.
So thus far we have aided over 5,000 people with disabilities and their loved ones, which is more than I think we ever expected being able to do.
Ed: Now one of the main ways in which we see disabled people represented is through sort of inspirational stories of overcoming adversity. Is that a wholly good thing or not?
Anna: It's complicated. Unfortunately, a lot of times it's, I think, framed in a way that does more harm than good. We nickname that sort of thing inspiration porn, which is essentially this story of, ‘oh, this lovely, inspirational, disabled person, look at them overcoming these challenges, although life must be so sad, but they're still at the grocery store buying eggs. Give them a pat on the head’.
And it's so, I think condescending, paternalistic, and it ignores the ways in which, you know, disabled people do face very real oppression. And we do have to do some very real work to achieve the things that a lot of people take for granted. But by treating us as inspirational and encouraging us to overcome, you're ignoring those barriers that actually we should be eliminating. So those inspirational stories, I think too often take for granted that it's wrong that these basic things require overcoming.
Geoff: Where do you find hope and optimism about the future of the disability justice movement?
Anna: Yeah, there's so much hope. I look at the amazing other disabled people working in this space, both in the UK and worldwide. And there's so much potential and things are changing. They're changing slowly because we're up against a whole lot, but they are. The way I got in touch with the podcast was through the Shaw Trust Disability Power 100, which is an annual list of the 100 most influential disabled people in the UK. And being at that event, you know, I couldn't help but be optimistic. Sitting in a room with 99 other fantastic disabled leaders who are, you know, working across disciplines in, whether it's sports or whether it's technology or education, to just push our people forward. So there's a lot to be optimistic about.
Geoff: Anna, is there anywhere in particular that is, a world leader on this?
Anna: Well, the classic answer is that the US and the UK have really robust laws. But I think too often these two countries pretend to have the monopoly on disability rights, and that's not quite the case. For example, Argentina really interestingly passed what is a very similar law to the ADA in 1981. So almost a decade before the ADA, ahead of the us. Quite strangely it was under Argentina's dictatorship. And the tentative story on that - we don't quite know why for sure - is that there were family members of people quite high up in the dictator who had contracted polio and were wheelchair users. So you see this really interesting link with a lot of laws across the world on disability. And it depends on the family relationships, it depends on: do you know a disabled person? Are you seeing disabled people around? Which goes back to what we were talking about with that issue of visibility.
Ed: Now on the podcast we have something called the Geoff-ocracy with Geoff as the benign ruler, or so he claims. If you were chosen by Geoff to be the Minister for Disabled people - I don’t know whether that's the title you would want - but what title would you want and what would you want to do??
Anna: Well, the running joke in the disability community, and I'm telling you a secret here, is that what you guys call the Minister for Disabled People, we call the Minister Against Disabled People. So I would love to help change that. Sure, you can make me Minister for Disabled people.
Anna: Well, first of all I would move - if I could - the Minister for Disabled people out of the Department for Work and Pensions (DWP). Because too often that role has just been focused on what's called the ‘Access to Work’ programme: getting disabled people into employment. And when you look at the grand spread of issues that disabled people have, certainly employment is one of them. But how am I going to have a job if I can't access accessible housing, if I can't go on the pavement to get to my work, if the bus and the tube lifts are broken when I try to go there? So we just need a much more holistic look at disability. And with that position being in DWP, you don't have that. And we just need to get disabled people into all the positions that work under that minister. I could be wrong, but as far as I know, there has never been a disabled person as the Minister for Disabled people. And so you see that they often have no idea what they're doing. We just need people who are living it if you want to actually solve these problems.
Ed: Sounds pretty compelling to me, Geoff. I'd say Anna's got the job, hasn't she?
Geoff: Absolutely.
Anna: [Laughs] Thank you. I don't know if I want the job but thank you.
Geoff: [Laughs] Anna Landre, thank you so much for joining us and for being part of this conversation.
Anna: Thank you guys. It was lovely meeting you.
Christoph Keller - Novelist, editor and playwright. Author of ‘Every Cripple a Superhero’
Geoff: With me now is novelist, editor, playwright, and author of a fantastic new book called Every Cripple of Superhero, Christoff Keller. Hello.
Christoph: Hi. Very nice to be on your show.
Geoff: It's great to have you. I really enjoyed the book. I'd not come across your writing before. The book is a memoir. That slightly oversimplifies it because it flips between memoir and verse and story, but it tells your story of living with spinal muscular atrophy, type three…
Christoph: It's a rare, but not that rare disability. It's genetic, it affects your involuntary muscles. So I mean my arms, my legs - I’m in a wheelchair. I can't walk anymore, can't even stand anymore. And it's progressive, so that means I was born with it - even though we didn't know that - but then after a while a very slow progression set in.
Geoff: What's so interesting, and what you get at so well with the condition being progressive is how disability can affect relationships over time…
Christoph: I always thought that disability is in a sense a good friend chooser. You instantly develop an antenna of how people react to your disability. So that hurts, but I learned to kind of accept that as… I mean since my book is called Every Cripple a Superhero, I learned to accept that as a superpower.
I kind of have the ability to detect that. And I certainly got lucky when I came across my wife who is so unbelievable in dealing with what I have, which is not easy. Because it's progressive, there's always other versions of me. Every once in a while the disability progresses and there are things I can't do anymore. And we have to deal with.
Geoff: You write that people were surprised that your earlier books, your earlier writing, weren't about, your “thing”…
Christoph: Like you said, when my first book came out, they said ‘well, of course he's writing about his disability.’ So I said, no, I'm not. I was a writer, period. And then after a few, novels and books - I don't know, as one of my seventh or eighth book, I decided with the help of my wife Jan, ‘isn't it time to write about, something that doesn't make you, but it's not that it's not part of you?’
And that was a really great and painful experience because to then really honestly write about such a tough thing that really concerns you is brutal. But it was also cathartic. I'm talking about the book, ‘The Best Dance’ and not ‘Superhero’, you know - the prequel, if you will - but for then the sequel, I thought I don't wanna use a memoir kind of narrative. It's a modern form. This book is so rich, and it's so wonderfully hybrid with all the many essays. A little play, like the radio play, the aphorisms, the poems. And it sort of makes it hybrid, I think makes it also wonderful to read.
Geoff: And another way in which you break form you, you use photography. Tell us about that decision.
Christoph: The initial idea was I was upset with all the broken curb cuts. So many everywhere. From completely unusable, to simply dangerous. So I rolled around and took pictures of the broken curb cuts. And the idea was to send them to the city and say, well, you gotta fix these. But then what happened is when I went back to the computer and looked at all those pictures, they were so gorgeous. They were mainly reflections. That created gorgeous distortions. So I realised these are portals to another New York City - a magical, beautiful, mysterious, unexpected town. They have to be in the book.
Geoff: Something I wanted to ask you about is you're living in Switzerland again now, you spent a lot of time in New York, you’ve obviously traveled the world - What have you learned about the ways in which different societies disable people?
Christoph: The Swiss way to deal with the disabilities…. I basically grew up being ashamed of my condition. Nobody talked about it, including in the family. That’s just the way it is. Don’t demand anything. Wait till it's given for you freely. And then be very grateful. Say ‘Thank you, thank you, thank you.’ And I unlearned that in New York, New York is special. I just very soon felt ‘you know what? Everybody's a freak here, so I can be a freak.’ What they do is they say, ‘Oh my God, you have such cool glasses! ‘Love your hat!’ Or even ‘Hey! love your shiny wheels!’ And someone looks at me and doesn't just see the people with a disability, but a man with a potential, whatever that potential could be.
But I still feel in Switzerland there's a huge, last obstacle. And that is that we are not meant to be in positions of power where we can decide about our own lives. I don't know whether that's fully true in New York, but I think when you think of the activism in the U.S., it’s so much more powerful. I mean, we with a disability, we are 20%. That's the rough estimate. We really need more representation and that's what I wanna fight for. And not just one, but many.
Geoff: It’s so interesting hearing you talk about this, because I'd have thought that the European experience might be better than the one in the States, just by virtue of the fact that we have safety nets here in Europe to a far greater extent, in terms of things like healthcare and social care.
Christoph: Mm. All these welfare things are of course great, and in that respect, the U.S. is a very brutal society. So here we have an insurance, which is unfortunately called invalid insurance - it's very telling what the country still thinks of people who need that kind of assistance - but that got us pretty high up. They pay a lot, so when you have a disability here, you don't end up on the street. In the U.S. you could. So that's obviously better, but people basically think, ‘well… but they have that insurance, they're being taken care of. And now they wanna see it in Congress! I mean, is it ever enough?’ In a strange way a mostly good institution becomes also an obstacle.
When I compare the two countries, I often go back to the A.D.A. - the Americans with Disabilities Act that came in 1990 and had a very powerful tool, which was the right to sue. In this case, it was a good thing. Of course, they were all afraid that it's gonna be waves and waves of lawsuits, but it was actually modest given what the U.S. is like. But what it did is like overnight - and by overnight I mean two/three years - it changed the country.
It made it so much more accessible . And in Switzerland, we came 14 years later with that law, but without the right to sue. So that brings me back to that the disabled have to be ashamed, et cetera. They have to wait till it's given to them. It's the exact same thing: No tool to actually get your thing through. So that is a big, big difference.
Geoff: How optimistic do you feel about things moving towards societies that embrace difference, be it a physical disability, be it neurodiversity… that human beings just aren't all built the same way, so societies shouldn't be built for the people in the middle of the bell curve?
Christoph: I'm actually optimistic. I do think we are on the right track. You know, with all the discussions about gender, ethnic, political correctness - and yes, it does get on my nerves sometimes there’s so much being discussed - but I think that pushes it all in the right direction, you know? One problem I have with that is actually that sometimes all these discussions actually crush the discussions about disability because it seems to me there can be a group of wonderful variety, diversity, but no disability. As delicate as that may be for God's sake, include disability, and then it would be even more diverse.
Geoff: Well we're great believers in the power of empathy on this podcast, and I think when people are able to hear the stories and experiences of other people, it can change attitudes, change perspectives. And the book does a fantastic job of that. It's called ‘Every Cripple a Superhero’, Christoph Keller, thank you so much for taking the time to talk to us.
Christoph: Thank you for having me. It was a pleasure.
Ruth Malkin - Community Co-Curator, People's History Museum
Geoff: Now, the People's History Museum in Manchester is currently staging a landmark exhibition about the fight for disabled people's rights. It's called ‘Nothing About Us Without Us’. And with us now is Community Curator Ruth Malkin. Hello!
Ruth: Hello!
Geoff: Can you start by telling us a bit about the exhibition and the idea behind it?
Ruth: Well, as you say, it's about the struggle that disabled people have had of getting what everybody else takes for granted. Which can be summarised quite nicely by one of the sections of the exhibition actually: ‘to boldly go where everyone has gone before.’ Which was a slogan from the Disabled People's Direct Action Network that was active in the 1990s, trying to get disabled people access to public transport.
Disabled people have had centuries of other people deciding what their lives should be like, and we have struggled against that for years. And that's why it's called ‘Nothing About Us Without Us’ because we feel we are the best placed to make decisions about our own lives and this exhibition celebrates the struggle to achieve that.
Ed: Now, you’re a community curator, Ruth. Could you tell us what that is and what that's been like for you?
Ruth: There’s a team of us. So, I'm a community co-curator. There have been four of us working on this exhibition, but also there’s a steering group of disabled people behind us who have been instrumental in making the decision about the exhibition and the museum has acted as a facilitator. They have offered their space and their expertise, but it has been led by disabled people: for everybody, but for disabled people, particularly to show what our lives are like and what they could be like. So, it’s disabled people past, present, and future.
Geoff: And how did you personally get involved?
Ruth: I have been involved in the Disability Rights Movement and disability arts for many, many years. I was a member of the Disabled People’s Direct Action Network, and I was one of the people who visited the museum actually and there was a board about disability rights that wasn't quite right there. And I remember going away thinking, ‘oh, I should challenge that’. Well, some disabled people that I happen to know did challenge that. One person in particular on the steering group said, ‘I think you'd be ideal for this’. And I thought, well, I'll apply for it. And I did. And I was very lucky to be one of the four [co-curators] that were chosen.
Ed: Now we've been talking about the social model of disability on the podcast today. How has that idea informed the disability rights movement and how is that part of your exhibition?
Ruth: The social model of disability takes the focus off the individual, and the individual’s defect – as it is seen generally in society - and puts the emphasis on removing the disabling barriers. And it comes about actually from somebody called Vic Finkelstein who was an apartheid activist in South Africa, and he was a wheelchair user and he was the one who came up with this idea of ‘what is that disables me’? And that was picked up in this country and, taken on by sociologists. It has informed our entire exhibition.
Geoff: So, we just talked to Anna quite a lot about mobility. Maybe you could talk about some of the other ways in which this specific exhibition has been made accessible?
Ruth: They've done as much as they can do at the museum to try and remove the barriers for as many people as possible. So, the museum itself is physically accessible. But there's also a quiet space. So if you feel a bit overwhelmed by the crowds of people, you can go and sit in the quiet space. All the objects are audio described. Every single label has been interpreted into British language, and this is accessed through a QR code. If you haven't got your smartphone, you can borrow a tablet from the museum and someone will show you how to access the audio description, the subtitles and the British Sign Language.
Audio-described tours are going to take place and sign language tours are going to take place as well. There are one or two other adjustments we've made, but we try to cover everything that we can think of. But, we know that access is an ever-changing thing. So, if you feel that your needs haven't been met, then come and talk to us. Let us know about what your needs are, and we will try and meet them.
Ed: And what's the reaction to the exhibition been like, Ruth?
Ruth: It’s been overwhelming really. At the moment a lot of people who've seen the exhibition so far have been people who've been on the journey with us or people who know about the journey that we've been on. People have just been absolutely overwhelmed by it. For me personally, and the feedback I've got from other disabled people, was ‘I never thought I would see an exhibition about my experiences and my struggle for human rights’. And here it is! And that's what people have been saying. They've been saying, we never thought we would see our lives actually commemorated in this way.
Ed: And for able-bodied people who go around the exhibition, is there a particular thing that you would like them to take out of it?
Ruth: I would like them to go away thinking that the battle isn't won. And I would like people to realise that we are all in this together because disability can happen to any of us at any point. A lot of people think ‘disability doesn't affect me’, but it does. The disabling barriers affect everyone in our society, and if we remove them effectively, then we could function as a society much better.
And I would also just like to say – sorry to say this Ed - I would also like to say that I hope that people will go away from the exhibition knowing that there's no such thing as ‘able bodied’.
Ed: I was actually wondering about my use of the term, or whether it was the wrong term to use.
Geoff: Is non-disabled the correct [term]?
Ruth: There’s no such thing as ‘able-bodied’. People are disabled or non-disabled in terms of the social model of disability.
Geoff: Ruth, very early on when you were telling us how this exhibition came to be, you were talking about being at the People's History Museum, seeing an early version of this and thinking: ‘I must challenge that’. Is it your hope that within your lifetime or beyond, that disabled people won't have to kind of go through life thinking, oh, ‘I have to challenge that’? Do you feel optimistic about that?
Ruth: I think everyone has to challenge everything all the time. Society is forever questioning. I think that that is a healthy thing that we should be driving forward. All of us. Society is dynamic and there will always be the need to challenge the status quo. That is not something that should be considered to be a negative thing. That just helps our society to flourish
Ed: Ruth, sometimes we blame the issues that disabled people face on the ways our society was set up 50 or a hundred years ago. But new issues continue to emerge, don’t they? Can you talk to us about the ways in which new technology causes barriers to disabled people?
Ruth: Oh yeah. There's lots of ways that new technology is adapted without actually thinking about how disabled people are going to use it. A pet hate of mine is touchscreen. We have everywhere touchscreen technology and it’s just not suitable for lots and lots of people for lots and lots of reasons. How do you touch a screen if you can't see it? I have dyspraxia. So any of these things where you have to press something and hold or remain still for any period, people with Parkinson's, et cetera, or cerebral palsy, that situation is worse. Moving away from museums, I've worked with the NHS to try and get them to understand the way they do, say, mammograms isn't accessible to wheelchair users, isn't accessible to quite a number of disabled people actually. Not everyone can sort of hop on a bed and lie down and remain still. But we've forever been asked to do these things.
So in that way, all these advances have taken place without actually thinking, ‘what is the makeup of the population and how can we make it inclusive of everybody’?
And I have a tremendous problem for example, with headphones. I can't necessarily always use headphones. I wear hearing aids. I need headphones to be compatible with hearing aids, they’re not always compatible. So it's about, not thinking, ‘oh, we've got the magic bullet that meets everybody's needs’ and we're just going to provide that one thing. It's about providing a whole range of options, and I think that that's what we tried to do in the museum. We've tried to provide information in the whole range of options so that people can choose the best option for themselves.
Geoff: And when does the exhibition run until, Ruth?
Ruth: It runs until 15th October 2023 and we will be doing special days linked to different celebration weeks. So for example, British Sign Language Week, we will be doing special tours etc about the exhibition to focus on the deaf people that have been celebrated in the exhibition.
Geoff: Well, it sounds brilliant. I really do want to come and see it. The exhibition is called ‘Nothing About Us Without Us’. It's at the People's History Museum in Manchester. Community Co-curator Ruth Malkin, thank you so much.
Ruth: Thank you.
Ed: Thanks so much, Ruth.
