Episode 2.8: Contra*Making (2) with Corbett O'Toole - Show Notes and Transcript
Simple English summary:
How can we think about disabled people as makers, and not just as users? In this episode of Contra*, I continue the conversation with Corbett O'Toole about disabled people as designers, tinkerers, and experimenters with environments of daily life.
Themes:
Design by disabled people
Cost of designing for disability
Identifying and documenting people's relationship to disability
Access as care and love
Non-disabled people lose out on not being part of our world
Links:
People, Art, Institutions and Writing Referenced:
O'Toole's article on disability positionality
Saul Alinsky's book Rules for Radicals
Access as radical hospitality by Mixed Blood Theatre
Definitions:
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Introduction Description:
The podcast introductory segment is composed to evoke friction. It begins with sounds of a wheelchair rhythmically banging down metal steps, the putter of an elevator arriving at a person’s level, and an elevator voice saying “Floor two, Floor three.” Voices begin to define Contra*. Layered voices say “Contra is friction…Contra is…Contra is nuanced…Contra is transgressive…Contra is good trouble…Contra is collaborative…Contra is a podcast!…Contra is a space for thinking about design critically…Contra is subversive…Contra is texture…”
An electric guitar plays a single note to blend out the sound.
The rhythmic beat of an electronic drum begins and fades into the podcast introduction.
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Episode Introduction:
Welcome to Contra*: the podcast about disability, design justice, and the lifeworld. This show is about the politics of accessible and critical design—broadly conceived—and how accessibility can be more than just functional or assistive. It can be conceptual, artful, and world-changing.
I’m your host, Aimi Hamraie . I am a professor at Vanderbilt University, a designer and design researcher, and the director of the Critical Design Lab, a multi-institution collaborative focused on disability, technology, and critical theory. Members of the lab collaborate on a number of projects focused on hacking ableism, speaking back to inaccessible public infrastructures, and redesigning the methods of participatory design—all using a disability culture framework. This podcast provides a window into the kinds of discussions we have within the lab, as well as the conversations we are interested in putting into motion. So in coming episodes, you’ll also hear from myself and the other designers and researchers in the lab, and we encourage you to get in touch with us via our website, www.mapping-access.com or on Twitter at @criticaldesignl
How can we think about disabled people as makers, and not just as users? In this episode of Contra*, I continue the conversation with Corbett O'Toole about disabled people as designers, tinkerers, and experimenters with environments of daily life.
Interview Transcript:
Aimi Hamraie:
So this also relates to a broader issue that you and I have talked about a lot, which is the types of circumstances and experiences that have basically enabled and forced, depending on how you think of it, a lot of disabled people, maybe even most disabled people to redesign things in daily life to make them more accessible.
Aimi Hamraie:
So I wonder if we could just start to talk about that. You initially, when we met many years ago at the Society for Disability Studies Conference, I remember we were in like a discussion group and we were talking about this. And then later you had pointed me to some historical examples that ended up being in my book for example around curb cuts. But yeah, just what are your thoughts about this phenomenon and how have you participated in it and what have you observed over time?
Corbett O'Toole:
Well, I think it's really fascinating that nobody, I mean, except a few of us even imagined that disabled people would have to become designers, when everything we've said up to this point in the interview is basically all about how the world creates access barriers. So the people at Through the Looking Glass, which is a group that works with parents with disabilities, did a study on their kids, on their non-disabled kids. What was it like growing up with a disabled parent? What did you learn?
Corbett O'Toole:
Because a lot of the studies presume, I mean certainly in Britain there's a whole thing about carers, young carers and the burden of having a disabled parent. And what they came back with in the Through the Looking Glass study was kids who have disabled parents have much higher levels of troubleshooting skills and resilience.
Corbett O'Toole:
And I feel like that's a direct result of the way that if you're in that intimate contact as a kid would be growing up with a disabled parent, you get to see that every day way of figuring stuff out. I'm in a wheelchair, I get to a building, what do I do when I can't get in? Who do I grab? How do I reach something on a shelf that I can't use? Do I use the store person who may or may not be available to help me go down the aisles or do I just grab a random stranger when I need one item at a time?
Corbett O'Toole:
We are constantly, it's like we're like the world's two-year-olds. We are constantly, I heard this great definition of a two year old, a two year old is a scientist and we are their lab and all they're constantly doing is testing, testing, testing, which theories work and can I do this?
Corbett O'Toole:
And I feel like disabled people in the very best sense of that word, we are constantly experimenting. We're constantly asking questions. We're constantly challenging our environments and when we have to function in a particular environment, we're figuring out cool stuff to do.
Corbett O'Toole:
I joke that the dollar store is our favorite hack place because I know disabled people that have very limited arm reach. And they'll go to the dollar store and sometimes it will be a coat hanger and sometimes it'll be the bamboo back scratchers, something that can give them a pole or the dinosaur clamp toy that they are using as a grabber or dots from the store that people put on stuff, blind people put on stuff just to mark it. It doesn't have to be full braille, they just have to know where the button is kind of thing.
Corbett O'Toole:
And so stuff that's made for disabled audiences tends to be really expensive. So when my kid was little and she needed trunk balance and I wanted something we could take places. All that the disability system was giving me was a $400 piece of equipment that was made of plywood and weighed 50 pounds and sat on the floor, none of which I could use. So I just went to Toys R Us and I said, which one of these is going to be the easiest for me to transport?
Corbett O'Toole:
I looked in that aisle for kids seating when you take them to a restaurant and they don't have a kid chair and that's what we used for four years. And then the other part of that is it's no good if only I know it. So a lot of disabled people's knowledge gets shared.
Corbett O'Toole:
It used to get shared, there's this guy named Jim LeBrecht. Who's making a film called Crip Camp and it's basically about, he went to camp with Judy Human and a bunch of other people. And he talks about how that kind of community connection also creates shared community knowledge about.
Corbett O'Toole:
And his argument that he makes in the film is, this isn't giving it away because it's going to be on Netflix in 10 seconds, is that when you have access to community that reminds you that you're a person worth being and shares the resources and knowledge of how to survive in an inaccessible world, that creates the environment for disability rights movements.
Corbett O'Toole:
He says that those two things are absolutely connected and there are people, some people at WID, AT the World Institute on Disability, did a study about disabled people who were doing things to change the world. And every one of them had an aha moment of realizing that the access problems weren't about them, but were about systemic problems.
Corbett O'Toole:
So there's a real need when we figure something out, you'll see these hacks, people sharing the hacks all the time. Whether it's a food hack, like how do you make something that takes the least amount of spoons in the kitchen? Or how do you get food delivered when, like I do, when you live in a neighborhood that's not rich and doesn't have good delivery.
Corbett O'Toole:
But it's so funny to me when I see a design problem or I say to someone who's designing something, we could talk about this and their attitude is like, oh, I don't want to do something specialized just for you people. And I'm like, do you have any idea how many people benefit by the ways?
Corbett O'Toole:
There was a great video a million years ago when curb cuts were new, where I think it was a student at UC Berkeley, just put a camera there and just watched who was coming down the curb cut. It was just like from the knees down and it was like, one out of every 50 people using it was using a wheelchair.
Aimi Hamraie:
There's an example of that, that this was like the first moment I remember ever being aware of disability. So I have tons of disabled people in my family on both sides of my family. But one of those people was an interior designer prior to becoming disabled.
Aimi Hamraie:
My aunt and so she lives in Mexico. She uses a power wheelchair and she lives in this house that she designed herself. And had this whole career as an interior designer. Her house has this marble staircase that goes in a circle and a spiral staircase and for a long time she had to hire someone to carry her up the stairs to get to her bedroom because there are no bedrooms on the first floor.
Aimi Hamraie:
So I was like five or six years old and I remember going to her house and she was talking to architects and fabricators and stuff about designing an elevator that ended up being a glass elevator that went in the middle of the spiral. And so the next time that we visited, it was there. And it was this moment of like, oh, she made this, she solved this problem.
Aimi Hamraie:
And my dad who, he's an engineer. He's very MacGyvery. It's like, I remember him scheming with her about materials and what sorts of systems to use for the elevator to work. She basically invented this elevator for herself. And things like that, someone could say, well she had prior training or whatever, but she'd never thought about stuff like that.
Aimi Hamraie:
She had literally built herself an inaccessible house that had a spiral staircase with no railing that she used to go up and down. So it was like the most able bodied design possible. But then when she became disabled she just kind of, her creativity and aesthetic and everything just went in a totally different direction.
Aimi Hamraie:
And she started designing swimming pools that were accessible for people, that were these beautiful ramped swimming pools and just super cool stuff. And there's so many everyday examples of things like that too. As you pointed out, it's not these expensive hacks. A lot of the times it's what is available and what can people easily share with each other that like, oh this is what I use and so maybe you can use it too.
Aimi Hamraie:
That kind of stuff, I feel like needs to be documented and there's an element of it where disabled people are sharing the information with each other as you pointed out, through different communities and networks. And then there's also an element where a lot of non-disabled engineers are reinventing the wheel a lot of the time.
Corbett O'Toole:
Oh gosh. Yeah.
Aimi Hamraie:
Because they're not aware that someone has already addressed this problem and they maybe just need it to be produced with a different set of materials or it would be good for mass production or whatever.
Corbett O'Toole:
And a lot of that stuff is about, it's intellectual curiosity. I mean, I forget the name, Karen, you might remember. Karen Nakamura has a name for this kind of design approach of we're going to invent a hand that signs or we're going to invent a wheelchair to climb stairs. And I'm like, and no insurance is ever going to pay for it because do you understand that the insurance companies say that they won't pay for a wheelchair that has to work outside the home. It only has to work inside the home.
Corbett O'Toole:
You're not making a wheelchair that could go into a bathroom, how am I going to get that stair climbing thing? And it's just, there's such a disconnect. If one more person says, oh, exoskeletons. And I'm like, I'm not opposed to technology going, but like that film, Fixed talks about, real life is a very different reality.
Corbett O'Toole:
And according to the census, 76% of people with disabilities in the United States are permanently unemployed. And the average income for a white man is like 15,000 and for women it's, white women, it's less and on and on and on. So it's like we need solutions that are community based, low cost, easy to implement, easy to replicate and really variable.
Corbett O'Toole:
Like having wall studs where the counter can be at 29 inches for me, but at 30 inches for somebody else, like that's the stuff that makes sense, not let's invent one table that costs $18,000 that goes from 30 inches to 29 inches, any ways.
Aimi Hamraie:
Yeah, totally. The term that comes to mind that I've heard from Liz Jackson, which I think is her term, is disability dongles, like these kinds of just random technological objects that are created that very few disabled people actually want or can have access to. But that's where the majority of funding and research and stuff goes into with less attention to how consumption will happen on the other side of manufacturing.
Corbett O'Toole:
Well, and in that model we're just the object. I participated in a hackathon that was a nightmare. It was a disability hackathon. It was put on by Google and this company TOM. And everything about it presumed that the disabled person was the object. And I want to say in parentheses of pity because that was how it was framed.
Corbett O'Toole:
The idea was these non-disabled people would come and a disabled person would sit there and say, I need a way to open the door and the non disabled people would build it and then everybody would be happy. And it wasn't really about disabled leadership or what disabled people really needed.
Corbett O'Toole:
And a couple of people, the one in San Francisco were able to use it that way. But the problem we took on, our team took on is the fact that if you use a power wheelchair and you're a woman and you don't have a catheter, it's almost impossible to use the toilet independently.
Corbett O'Toole:
And I'm like, but yet the guys can, but because the wheelchair designers presumes the guys can pee in a copper or whatever and they don't have to transfer out of their wheelchair. And so we just did this whole thing and then a very small project invented a way to get a seat off a wheelchair and up over a toilet. And that was just with some people faking it as we went along.
Corbett O'Toole:
And I just think that disabled led design is so critical and yet so few of the resources are available to something that disabled people are leading, partially because we're not in the engineering schools and we're not in whatever. But partially because, just society just sees us as not very useful and disposable unless they can make money off of us. And so if someone can get a grant to build another exoskeleton and that's going to keep them employed, four people employed for two years, then why not?
Aimi Hamraie:
Yeah.
Corbett O'Toole:
From their point of view. From my point of view, it's like, oh my gosh, we could so use, like put manual wheelchair tires that don't get flat so easily or propulsion systems that work better. And nowadays with so much of the equipment with Medicare model, where you have to pay 20% and everything's priced as if insurance is paying for it, more and more disabled people I know are buying their own equipment because the cost of the equipment is cheaper than paying the copay.
Corbett O'Toole:
So there's now this whole underground market of these $2000 to $4,000 wheelchairs because they stay under the copay of a $30,000 power chair. But they provide some power chair functions for certain kinds of bodies.
Aimi Hamraie:
Interesting. So that the insurance coverage and regulations guide, the consumption of these technologies, but the people who are creating them are not necessarily considering how much of it insurance is going to cover on the other end.
Corbett O'Toole:
Right. The people who are playing, because this is an interesting design idea or challenge, rarely think about whether or not anybody will ever pay for it except out of pocket. And I mean if they were just doing a basic business plan and they realized that 76% of the people are $50,000 or less, that model isn't very sustainable.
Aimi Hamraie:
Yeah. I mean what an interesting idea. I wonder what happens in the business plans that they do produce for these technologies, like who they're pitching as the ideal consumer. I would love to see that because there seem to be feasibility issues with taking something like that to market, if very few people are going to be able to buy it to begin with.
Corbett O'Toole:
But when I see the press about it and stuff, none it's really about having an actual usable item for an actual disabled person. It's all about how cool the idea is and how cool. Able-bodied people appreciating other able-bodied people's ideas of what they think might maybe be fun to [inaudible 00:16:09], as opposed to what's usable.
Aimi Hamraie:
Yeah, like the ASL glove is an example, I remember being in an archive that was owned by a very wealthy institution and there was a whole archive of the design of an ASL glove that they had marketed and that they had paid for.
Aimi Hamraie:
And then years later I heard about that same institution funding someone else to design an ASL glove and all the media about it was like, first ASL glove. And I was like, no, literally this same funder has in their historical archive, from like 20 years ago this other ASL glove. What are you talking about?
Aimi Hamraie:
And the first one is actually designed by someone who is hard of hearing and there was an oral history with them. So that was interesting at least. But the second one was some college students who had no relationship to disability.
Aimi Hamraie:
So anyway, so something that's been coming to mind actually, and I just said these words, was this concept that you introduced in an article in disability studies quarterly about the relationship to disability and people identifying their relationship to disability.
Aimi Hamraie:
And I send this article to people all the time because when we have conversations about disabled versus non-disabled designers for example, there is some complexity in there that's about precisely the issue you pointed out before, which was like families, various people who work as staff or in care positions and the way that allies work with disabled people on different stuff.
Aimi Hamraie:
And so I wonder if we could just talk a little bit about that concept and then how it could influence this broader discussion we're having about disabled designers versus non-disabled designers?
Corbett O'Toole:
Yeah. So first of all, I want to give credit for that phrase, actually it belongs to Mel Chen.
Aimi Hamraie:
Okay.
Corbett O'Toole:
I was working on my book and I was really struggling with, actually, it was before I was working on my book, but I was struggling with ways to imprint, communicate beyond the disabled non-disabled binary because I felt like it didn't reflect what it meant to be a partner of someone with a disability, basically how much a person who wasn't disabled sees the everyday experiences of a person with disability and quite frankly is often asked to be a mediator in inaccessible environments, interpreting for their Deaf partner or whatever.
Corbett O'Toole:
So I wanted language and I met with, I asked Mel to have a conversation with me. I was just talking about a lot of stuff, but I was really struggling with that particular framing. And Mel said, "Well it sounds like what you're talking about is relationship to disability." And I was like, exactly. And then I hopefully have footnoted it appropriately, maybe not along the way.
Corbett O'Toole:
But that to me was the light bulb that opened, the key that opened a whole bunch of rooms. So there's a couple of things that I think that are important in that. And one is, as we were talking earlier, we were talking about, you and I were presuming we were talking about people that had comfort and self love about being disabled people.
Corbett O'Toole:
And I think far too often in the design world, the people who are being consulted with are people that are not at that stage yet. So many people become disabled after the age of 18 and so they have this non-disabled life that they've lost. And so there's grief and there's adaptation and they don't want to lose their connection to their non-disabled community because they didn't have disabled people in that world before they became disabled.
Corbett O'Toole:
And they know that the more they move to a disability self-love identity, the less they're going to be connected to their non-disabled communities in some ways because those environments are no longer in many cases, are no longer accessible to them based on their new disability.
Corbett O'Toole:
So I think that part of the dilemma that we have is not just, we need language, not just about what non-disabled people's relationship to disability is, but also what disabled people's relationship to disability is, I don't have any writing or advanced thinking about that, but it's something that I'm always aware of, especially when you get an environment and people don't complain or about access or people just say, oh, it's okay, I'll just go home. I'll take my refund, thank you for the refund for the event that I no longer could go to.
Corbett O'Toole:
Anyway. So that's one piece of that puzzle. And then the other piece is, one of the things that I think is extraordinarily problematic is if we are in a professional context talking about disability, why is it such a taboo for people to have, be publicly stating their relationship to disability?
Corbett O'Toole:
At the Society for Disability Studies, as you well know, but a lot of people, your listeners probably don't. It was a conference that brought together a lot of people working in disability that were in academic context, professors, that's researchers, etc, along with a lot of community scholars and also a lot of students who were coming through the pipeline.
Corbett O'Toole:
So it was a pretty mixed environment. And as far back as the early '90s there was a meeting of, I don't know, about 30 people having a conversation. And some of the original founders of the society were in that meeting and it was kind of an informal gathering. It was in Oakland that year, so it was pretty close to Berkeley. So there were a lot of disabled activists.
Corbett O'Toole:
And at some point somebody said something and a person in the group said, well, I mean, are you disabled? What perspective are you coming from? Are you coming from, are you disabled? And the head, the person who had founded the Society for Disability Studies, it was me that said it, took me aside and said, don't you ever ask that again? Don't you ever say that again. These are our friends. We want them here, we need them if we want to grow this field, we do not discuss who is disabled in this room.
Corbett O'Toole:
And I was really angry and really shocked. And I also remembered the thing about the Saul Alinsky thing, about how you create something so it shall grow. So if you create a culture where disabled people are both needed and talked about, but also not to be public, then you create this whole downstream problem that I think we have, which is that we've created an environment where non-disabled people get to speak for disabled people because we haven't said that disabled people have a particular structural positionality that makes them experts in some way.
Corbett O'Toole:
And so the whole thing is this big morass of, to me, of problems. And in the book, what I tried to do is I decided that I'm also an archivist and I love history and I really wanted to make sure in my book and in my work, that I leave a record of what people's positionality was in relation to disability.
Corbett O'Toole:
So when I did my book, I said, okay, there's two things I want to think about. I want to identify people who do personally identify as disabled. And I don't want to create problems for people in terms of employment or whatever about their diagnosis. So in my book I said, I offered every person in my book, even if they're in the footnotes, three possibilities. You can identify as disabled, non-disabled or unknown, which could also be read as declined to state.
Corbett O'Toole:
And the other thing I did was I only based it on people's public positions. So if I knew that publicly someone identified as non disabled but privately was disabled, I used their public identifier. And I never ever, never mentioned disability, specific medical categories of disability unless it was relating to something they were saying like, so the deaf woman speaking at the deaf domestic violence conference said, I am a deaf woman, I say this.
Corbett O'Toole:
But if she didn't, I wouldn't have said that she was deaf. I would have just said that she was disabled, even though that's a huge other problem, deaf disability world. But that was the decision I made. And I didn't think it was sophisticated, but I felt like it was really historically necessary.
Aimi Hamraie:
Yeah. Yeah. And I think that the way that your book reads as a result of that is its much improved over the ways that those identifications are sometimes done by third parties. Very often there will be a focus on a diagnosis and if someone who's writing doesn't also share that diagnosis, they may write about it in ways that are weird or not how the person would have identified.
Aimi Hamraie:
And I think it did an important thing, just remembering to the first time I read your book where, because you would say so-and-so, parentheses disabled. And so it wasn't like fore grounded in the sense that it was necessarily even part of the sentence, it was almost like a pronoun kind of thing. It was clarifying how that person is to be understood or how they have identified.
Aimi Hamraie:
And so it just helped keep track of who are the agents here and who's doing a lot of the labor, who's making a significant historical impact, those kinds of things. And it's just like one of many things like that in your book that you do, that makes the argument in both a direct way, like you have a lot of direct arguments.
Aimi Hamraie:
And then this subtle argument that's part of the whole thing that's about disabled people are doing things and we need to recognize that. And also non-disabled people are doing other things and we need to be able to talk about how much space non disabled people take up in this history.
Aimi Hamraie:
Some of the other stuff that I remember from your book is the footnotes appearing on the same page, which is really important for giving credit for sources. Whereas in a lot of academic texts, the citations all are in the back of the book and a lot of people don't even read them. And then there's a kind of accessible language style that you use also.
Aimi Hamraie:
So all of that I think is, it's so connected, that you're basically producing a physical and text-based material thing, that is showing your design philosophy and your relationship to disability and your disability philosophy in the book itself which is super cool.
Corbett O'Toole:
Somebody that wrote this really nice piece, which I have to track down, about what if we thought about accessibility as if we were being gracious hosts to people in our homes. And it was something like radical hospitality or something. And I thought it was a really interesting reframing because in one hand, what you just said about my book sound like, oh, it was really thoughtful and really clear and also more like philosophically based.
Corbett O'Toole:
And that's true and the reason that exists is because I have people in my life that don't like to read books. I have people in my life that, the folks with learning disabilities said, "If you put the footnotes anywhere except on the same page, I'll never find them."
Corbett O'Toole:
It's why at the end of every chapter there's a summary of what the main points of the chapter was and what the main resources are because I wanted people to have a lot of information because I want people to challenge me. Like you can't say that, why did you think you could say that?
Corbett O'Toole:
I want the source to be right there. I also made sure all of my sources were publicly available on the internet, nothing's behind a firewall. But it was really because I wanted people I cared about to be able to read the book. And so that's to me, also the advantage of being connected to disabled people and disability communities, is that you're doing it because you care about the people in your life. It's not some abstract goody-goody thing, which can come or go depending on whether you remember to be goody-goody that day.
Aimi Hamraie:
Mm-hmm (affirmative). Yeah, totally. It reminds me of the Access is Love hashtag and that idea of hospitality. That term, I think it can mean so many things, but when it's connected to access, it also I think appeals to a sense of an ethical relationship towards visitors. And there are probably many people who just don't care about being inhospitable or whatever, but you would hope that most people would.
Aimi Hamraie:
And then also the idea that a lot of public spaces are part of the hospitality industry as well, and that there are all of these levels at which people are thinking about what it means to create welcoming and usable and comfortable spaces and making the argument for disability to be central to that.
Corbett O'Toole:
And on a not institutional level, my personal experience is that the more that a person I'm talking with or the more that the environment I'm in is connected with other people that don't have a lot of class privilege, the better it is. So I live in a poor neighborhood. So the stores are mom-and-pop corner stores and there's access barriers.
Corbett O'Toole:
But their presumption when I go in the store is, oh my God, my customer is here, how can I make this work for her? As opposed to when I go into Target and the point of sale machine is too high and target is actively, and I'm really not using this lightly, they have a counter that has a high part and a low part, the same counter and their point of sale machines are on the high part and I can't use it and I'm 5'4" and I can't use it because I can't see the screen.
Corbett O'Toole:
And we've been in discussion with them to move it to the lower counter. And they literally nationally refuse to do it and they're going to win. And this is not a joke, they're literally winning. And it's this trend I see in the corporate sector where access is a burden and they've figured out the least intrusive, the least amount of change they can make.
Corbett O'Toole:
And so it's this new concept I'm calling, accessible but not usable. They're technically legal and all of us that use target now are going to have to live with this for a long time because they're winning the lawsuit, but it's not usable but they don't care.
Corbett O'Toole:
And that to me is really the tragedy of the design approach that says it's about the law and it's about mandated building codes, when it really is about human access to services that everybody can use. And every time a place like Target does that, it just says, hey you, you're not my customer, we don't want you here.
Aimi Hamraie:
Yeah.
Corbett O'Toole:
And that's a world I don't want to live in, but that's the world I live in. And so, I would much rather shop at my local Latinx grocery store where they treat me better and maybe I can't reach everything as easily or maybe they've left a box in the aisle. But they're going to move it when I walk in this store, whereas Target's going to have those inaccessible point of sale machines forever.
Aimi Hamraie:
Yeah, it's totally true. So the economics of this also extend to other things like, we would imagine that if a corporation like Target could have a better accessibility standard, then lots and lots of people could benefit because all their stores are exactly the same, but they're not going to do that.
Aimi Hamraie:
And also supporting a big box store is going to drive out some of the smaller stores that you're talking about. So there's a gentrification dimension to it also. And there's something to go back to hospitality about, the ways that we create relationships with people in our communities.
Aimi Hamraie:
In my community also, I have close relationships with a few places where I feel like I can go and be comfortable sensory wise and stay there for a long time. And if Starbucks comes in or whatever and drives them out, then I'm going to lose access and I'm going to lose those relationships.
Aimi Hamraie:
And the space is going to change the way that, I mean already, the face of the neighborhood is changing through all these economic and racial processes. So all of these things are connected and it's a good argument for centralizing access is love or hospitality as a way of also counteracting some of those impulses towards homogenous, massive corporate entities existing. At the same time that those entities may make it possible for people all over the country to go and buy this one type of thing that they make available at a lower price or whatever.
Corbett O'Toole:
In my opinion, far too often disability and disabled people are framed as a cost problem, we're just problems. So too often the environments are just, we're just unwanted, unexpected alien problems and like the movie, to be hidden away and kept out of sight except for our super secret ally that can somehow, mitigate or get us food or whatever we need.
Corbett O'Toole:
And to me it's throwing away a huge population of people that have incredible resources, incredible knowledge and will lead to better and more interesting design options. And it just seems foolish. It just seems like culturally and structurally foolish that you want to hold onto a mistaken belief, rather than have access to a thousand more resources.
Corbett O'Toole:
So whenever I talk to nonprofits and they say, oh, we can't do it because of, I'm like, I got 76% of a population ready to volunteer, you want some, you want us? And they never want us, but it's like this kind of, I hate seeing our people wasted.
Corbett O'Toole:
And then when you have populations that are not integrated and not integrated in the sense of not useful to society, then we have all the problems that we get in communities where that's true, which we have in the disability community.
Aimi Hamraie:
Yeah. That leads to a cycle of devaluation also.
Corbett O'Toole:
Yeah. And with the way that the world is, there's always going to be disabled people. I always laugh at this idea of we're going to eradicate X disease. I'm like, yes. And tomorrow Y disease will appear that you've never seen before. In my book I joked, we're like human cockroaches. Disabled people are never really going away. You can just pretend like we are, but it's the loss of the world.
Corbett O'Toole:
And so for me, my response to all of this oppression and negativity is to say, what I really focus on is the resilience of disabled people. How can I help disabled people survive? And whether that's sharing knowledge with other disabled people, with their families, with people that care about them, with helping people document the work that they dol with supporting the efforts of people that are not me, that have other kinds of voices and other kinds of perspectives.
Corbett O'Toole:
To me, that's what we have, we have each other because really the world always tells us they don't really want us. And I personally think that disability and you saw that with the SDS [Society for Disability Studies] Dances, that hanging out with other disabled people is both intellectually really rich but also really fun and exciting and diverse and wild. And I think it's a pretty swell world to be in, and I feel sorry that other people don't know that, but they don't. Their loss.
Outro:
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