Episode 2.7: Contra*Making 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 the first of two Contra* episodes with my friend and colleague Corbett O'Toole, we discuss disabled people as design experts, focusing on transit systems and public spaces.
Themes:
Disability and design critique
How data defines problems for designers to address
Links:
Writing and Institutions Referenced:
Corbett O'Toole's book, Fading Scars, My Queer Disability History
Erving Goffman on stigma management
Article about the Empathy Lab
Kaiser Permanente
Mia Mingus’ blog, Leaving Evidence
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 the first of two Contra* episodes with my friend and colleague Corbett O'Toole, we discuss disabled people as design experts, focusing on transit systems and public spaces.
Interview Transcript:
Aimi Hamraie:
I'm so excited to welcome Corbett O'Toole to the podcast. Corbett is a community scholar, a queer disabled elder, the author of the book Fading Scars: My Queer Disability History. And you're also the cofounder of Reclamation Press. You were one of the first people who ever really in depth explained to me the idea of disabled people as makers, and that the complexities of that idea and how it relates to disability politics. So welcome Corbett.
Corbett O'Toole:
I'm really glad to be here, Aimi. Thanks.
Aimi Hamraie:
Yeah, it's such an honor. So when I contacted you to schedule this podcast recording, something had just happened, which was that you had posted on social media about BART, Bay Area Rapid Transit's new fare doors. Is that what they're called?
Corbett O'Toole:
I think they're called fare gates. That's what I just call them.
Aimi Hamraie:
Yeah, so the gates that a person would go through after you pay the fare. Can you say a little bit about what's going on with the fare gates?
Corbett O'Toole:
Sure. Just to give a little context, BART is a transit system that has installed ... It's a subway system. It's trains only and they have gates to go in and to go out of the station and it's, you pay based on how far you go. So that's part of why that system exist. It's fairly expensive as transit systems go in terms of the price you have to pay and it covers pretty much the whole San Francisco, a lot of parts of the San Francisco Bay Area. And the transit system itself sees itself primarily as a space for commuters, work commuters going back and forth. So it's very strong Monday through Friday, kind of 7:00 AM to 7:00 PM and weaker hours and lines before and after that.
Corbett O'Toole:
The other big population they see that they value is people going to airports. We have two major airports here, the San Francisco Airport, the Oakland Airport, and they realized there was a lot of money that could be made because the San Francisco Airport's the end of the line. So for someone going from one end, from a more a richer suburb into the airport, it's a nice way to do that for them.
Corbett O'Toole:
So there's a bunch of things that happen. So when BART was built, it did not have any elevators, even though it was a subway system designed and built in the '50s and '60s. And I came along and moved to the Bay Area in the early '70s, and at that point there were some elevators and the elevators could only be operated by the station agent inside the booth. But station agents are assigned a 12-hour shift, but only expected to work eight. So they would take off whenever they needed for their own breaks and stuff. And also the other thing that was important is if someone went home sick an hour into their shift, then there was no staffing for the other 11 hours. So that meant a disabled person or a family member who had a stroller, anybody that needed the elevator, it was a crapshoot whether or not you could get into the station or whether or not you could get out of the station.
Corbett O'Toole:
One of the early lawsuits that I happened to be involved in was getting the system to have a way of the elevator operating without a staff person being at that specific station.
Corbett O'Toole:
So I' have kind of a long history with the transit system. And I don't have a car. And even when I had a car, I really prefer public transportation. I was raised, my mom loved public transit, so we just did public transit a lot. So I value the system and I want it to work well. And BART is very fixated these days if you look at their media on fare evasion, which is they say that 5% of their ridership doesn't pay their fee. And yet they're putting practices now into place that affect all of us, the whole 100% of us. So this typical system is kind of a waist-high fare gate with thigh-high, they kind of call them shark fins that are triangular things that come together in the middle. If you pay your fare, they release up to the sides and you pass through and they come down. And sometimes they're timed right and sometimes they come down while you're going through them, whether you're walking or in a wheelchair.
Corbett O'Toole:
A number of people use the fare gates and jump over the top of them. It's a common thing that they do. And some people lift one side of the shark fins. So BART's decided two things. One is they're going to make the shark fins harder to lift, they're going to make them come down faster. And then the situation I encountered at my home BART station was that they had taken that shark fin concept and repeated it on top of itself. So the new shark fins basically come out between three and a half feet and five feet high. I haven't exactly measured, but that's based on my body, which means for someone like at my height in a wheelchair, it's coming down on my head.
Corbett O'Toole:
I saw it the second day it was ... It was installed on Monday. I wasn't in the system on Monday. I went on Tuesday, I saw it and I thought this is really dangerous and now I have to basically pay, but go through the emergency exit gate and not use the gate, the fare gates. But the emergency exit gate, as part of their fare strategy, are now locked and they can only be opened by the station agent in the booth. So now I'm back to the same problem I had in the 1970s. It's just taking a slightly different form.
Corbett O'Toole:
And so I thought I wanted people to be aware that this was happening. And so I went into the system, as I said, through the emergency gate and I paid my fare, but it went through it. And then on the way out I just said, “I'm just going to have somebody take a picture of me with these fare gates because I think it communicates the problem really well.” And I just asked a passing person, I handed them my phone and I said, “Please take a picture.” And they did. And then that picture went viral, like major viral. Like, I'm somebody on social media, you know, people know me a little and whatever, but that went like ... Like I was getting phone calls from TV stations within hours.
Aimi Hamraie:
Wow.
Corbett O'Toole:
Which I saw as just an opportunity to kind of talk about the problem and kind of educate people about what was going on. And the transit system's response has been, “We safety tested it.” And so one of the people who responded to me on my social media said, “Okay, they can say that, but you know, what's the history of the safety testing? Has it been tested with disabled people?” And the transit system itself has in-house accessibility experts because of previous lawsuits and an out of house accessibility advisory committee, neither of whom were consulted on the design at any point prior to installation.
Aimi Hamraie:
Wow. Yeah, so they're safety testing probably did not involve disabled people either, I would guess.
Corbett O'Toole:
They certainly didn't use the resources in-house that were available to them. And there's a couple of newspaper articles that BART produced about the efforts, the “fare evasion prevention programs.” And the engineers are like gleefully jumping up and down about how much faster they can ... How much more force they can add to the shark fin closing and how much harder it can be to get them open and how the purpose is to pinch people or to pinch those gates shut. Like the entire language is very troubling when you think about human bodies going through.
Corbett O'Toole:
And in fact, on a subsequent day, a second media group came out and was filming. A television station was filming the fare gates and a woman with a stroller was coming through. And luckily she had one of those strollers that was kind of boxy and very strong on the sides because she paid her fare, she starts through and the fare gates crashed down, these new fare gates crashed down on her baby stroller at the bottom and then she had to step back so her head didn't get banged in the ones on the top. People with disabilities are kind of the visible point here, but anybody that is going through the fare gates, and I sat there and timed them, I was for something and you know sometimes they were seven seconds, sometimes they were nine seconds, but sometimes they were three seconds. So there is that unpredictability of how the system works. And as my friend observed, the fare gate evasion was still happening. It didn't kind of matter. It didn't really slow it down very much.
Aimi Hamraie:
It's such an interesting case because as you point out, there are a lot of different people who are affected by this and disabled people are really taking the lead and doing the design critique. And that was something that I found really powerful and effective about the post that you'd made too because it very clearly explained what the design was, what the flaws were with the way that it was functioning, and who it was thinking about as the user. And then it also involved a lot of research that you'd done. Like you were just describing timing, the amount of time that it takes for the gates to open and close. And that is the kind of thing that a lot of people may not realize that they can do. That if you don't encounter these kinds of obstacles and barriers or potentially dangerous life threatening things on a daily basis, it may not occur to someone to actually go into BART and measure and count and generate data.
Aimi Hamraie:
And so this is something that I think is really important for people to understand about disability activism too. That it's a kind of design criticism often, but it's not always understood in those terms. People like the BART engineers may understand what you're saying as some sort of issue that they have to resolve in an engineering way, but not necessarily as a social critique of the design that they've produced or the effect of that on society. And so that's just something I want to highlight about this issue. I've learned from you about many times that BART has produced things that did not facilitate accessibility in many different ways and then kind of had to be called out on it. So we've talked before about the issue with the hand, I don't know what you call them, the thing that a person would hold on to in the placement in the cart. What are those called?
Corbett O'Toole:
I called them like they're handhold poles, but they're Florida ceiling and in DC they have them offset from the door. Because DC had this problem as well. When I would ride the DC subway, I had no place to go except sitting in the doorway because the off door spaces were consumed by these three floor to ceiling handrails and BART did the same thing. But they decided to put them right between the doors and it's only a seven foot distance. So a pole in the middle, and the poles had these C-shaped protrusions for people to hold onto. So made about a foot and a half of space between the person standing, holding onto the pole and the door.
Corbett O'Toole:
So BART has decided in their new trains to put those poles in two of the three doors. So my access in the current system was I could get in any door and my access in the new trains is two out of the three doors are unavailable to me. But I don't know that when I'm lining up, where to line up in the ... You know what I mean? So it becomes this hole.
Aimi Hamraie:
The hole would be right there as soon as you entered the train in the original design?
Corbett O'Toole:
These are new trains that they rolled out and we fought with them a lot about it, but they did the things that designers sometimes, well not designers, but systems do when they want a design that's bad for some people. They rolled the trains out, they did lots of demonstrations of them and they told the staff they worked for disabled people. So when we would go to visit the train and we said there's a problem with stuff, so they'll know there's no problem, this is a great design. And they had a printed eight-question evaluation that they were asking people to do and they had no accessibility questions on there. None whatsoever.
Corbett O'Toole:
So a subtle design thing that they did is right now in the system, in most cars, the wheelchair seating is that kind of dead space between the back of a seat and a doorway.
Corbett O'Toole:
So it's this nice little three or four foot square protected area. And in the new system it's in the foot space of a seat. So when I've been riding the new car is when I'm stuck on a new train, I take pictures because 9 times out of 10, I can no longer sit in the designated wheelchair seating because somebody's there with their stroller, somebody's there with their suitcases. There's less access and there's more people trying to share that limited access.
Corbett O'Toole:
So not only have they taken away two out of the three doors, but they've also taken away any ability of me to sit there. And also in the old system which was a two-door system, there were bicycle rail areas at each end. So if there were two of us in a wheelchair, we could sit in the first car because no bikes are allowed in the first car and we could be together. So I have a kid with a disability, we travel a system as two wheelchairs In the new system, there's no way for us to stay together. Now we're both sitting in the one car with the one door that we're allowed to sit in and now we're blocking both doors. Yeah.
Aimi Hamraie:
The design that tries to basically pack in as many people as possible, which was the reason for those Florida ceiling handholding things, also presumes that there are very few disabled people, also very few people with strollers or luggage, and therefore there's a need for less wide open spaces and kind of like anchored spaces along the walls and things like that.
Aimi Hamraie:
And this thing about not creating spaces that would have allowed more than one person who uses a wheelchair to be in the space to me is really reflective of there not being people who are part of disability culture, who are designing the space. Because if there were, there would be like a consideration of how people tend to relate and be together or disabled families or friends, and the kinds of spaces that would be required. And it's just so interesting that there isn't a standard for that in a place like San Francisco that's often known for being kind of like a hotbed of disability culture. So where do you think that the disconnect is there between the kind of like surrounding community and the actual engineering and design of the space?
Corbett O'Toole:
Well, I mean I think the reason ... I think that ... I appreciate what you're saying about the disability communities, that the Bay Area is seen as a hotbed and at the same time, I remember in the '90s parents would move here thinking the city of Berkeley had the center for independent living, yay! So the school districts might be great and the school district were horrible for disabled kids. So there's a way in which ... Like the things that the disability community pays attention to and focuses on and fights hard for get better. But if the disability community isn't doing that actively, then it's kind of like somewhat any place else except that the kids that are coming up since the 1970s are coming up in a town where they see people with disabilities all the time.
Corbett O'Toole:
And from the 70s to the 80s, the school for the deaf was also here, so they would also see people signing on the street. They got moved by the government to another town farther away. So now there's a whole other town that's getting deaf educated. So the presence of people with disabilities is more common. Grocery stores, for instance, are more likely to have some accessibility, particularly if they're local.
Corbett O'Toole:
But I think that the disconnect problem is really twofold. One is that I have this concept that I call the power of the assumption that there's only one cripple in the world and that person could have an invisible disability, that person could have an intellectual disability, it doesn't matter. It always feels to me like whenever I go to a space, any public space, people act as if I'm unexpected so I could be in the grocery store and I go very slow in the grocery store and I will turn the aisle and because of my height obviously, and in most grocery stores even standing people are invisible to each other. I have people visibly go, “Ha!” When they see me and back up and sometimes people like, “What are you doing?” Or, “Why are you there?” Or ... I feel a lot in the world as if I was from that old movie E.T. Like I'm an alien in the sense of I'm an unexpected entity that's not presumed to be in what people map out in their head, who they think is in the world and what they will expect to encounter in any environment.
Corbett O'Toole:
They have a map kind of based on their history, based on the media, based on the books they've read and almost no point or people with a variety of disabilities present in that, inside their head map. So when we get to the grocery store checkout line and maybe somebody needs help reaching something or someone needs help, or someone has a question or whatever, everything's unexpected and it's very problematic because it creates this burden for disabled people to have to be always be the goodwill ambassadors. And you know, I don't want to be nice all the time and I don't want to be nice when people are treating me like an alien.
Corbett O'Toole:
And yet if I don't answer, which I often do, like when people ask me questions in line, I don't answer, it's considered rude. So at one point when my daughter was about 10 and she doesn't like to interact with the world, she's now an adult, but she never liked answering questions. And we would be in line at the CVS or something and the pharmacy store and people would ask questions and I'd look at her and I said, “Do you want to answer?” And she'd say, no. I said, “Well, we're not going to ... ” I would turn to the person and say, “We're not going to talk about it.”.
Corbett O'Toole:
So we were discussing strategies. So we contacted Ruth Ricker, who's a woman from the Little People community and who had adopted a little person's son. And we said, “What do you guys do?” Because the kids were the same age and her son Yani said, “I charge them a dollar.” And so they're out in public, they're like us, we're in two wheelchairs, they are two little people. And so they're getting comments all the time. So Yani said, “Yeah, when, you know, if they say to me, oh, what's wrong with you? Or tell me about, how come you're little or whatever.” He just puts his hand out and they look at his hand and either he or his mom, depending on if he wanted his mom to say it or not said, “It's a dollar a question.”.
Aimi Hamraie:
That's amazing.
Corbett O'Toole:
And usually they just were so shocked. They shut up. And usually those kind of interactions are dependent on you and the other person being in a situation stuck together for enough time. But by then, typically by the time the interaction had come forward, someone had moved forward enough in line that that moment had kind of passed. But I thought it was brilliant. My kid thought it was brilliant.
Corbett O'Toole:
I love that kind of pushback, that kind of disabled thinking of I am not an alien. I deserve to be treated with respect. You would not turn to the person behind you in line and ask ... I mean you would if you were white and the person was not white, you might do this, but you know or man and a woman both pretending some level of individual good behavior. You wouldn't necessarily turn to people in line that you thought were your peers and ask these questions. So the purpose of the question is to remind me that I'm an alien in public space and I don't want to contribute to that kind of thinking.
Aimi Hamraie:
It kind of reminds me of this idea of stigma management that comes from Erving Goffman and that Rosemarie Garland-Thomson writes about in some of her work too, this expectation that if your presence is unanticipated and then creates discomfort for someone else, that you're supposed to manage their discomfort and that creates a double burden for you, energy and emotional and otherwise kind of burden because you are just there. You're just trying to be there and do your thing.
Aimi Hamraie:
And that's the sort of thing that I think that design kind of raises interesting questions around too because designs often create expectations around who and how many of a type of person is going to be there. Like I remember at Berkeley, close to where you live, there's a parking lot that has a whole bunch of Nobel Prize winner designated spots and then there are a few disability accessible spots kind of at the end. And so there's an expectation, I mean maybe some of the Nobel Prize winners were also disabled and they use their Nobel Prize placard instead of the disability placard, but there's an expectation that they're going to be a lot of like science geniuses and two disabled people or something like that. Or bathrooms only having one wheelchair accessible stall is another example.
Aimi Hamraie:
So it would be interesting to kind of imagine worlds in which there are like six accessible stalls and one non-accessible stall or something like that, and kind of how those spaces would be populated and yeah.
Corbett O'Toole:
Well, and that was one of the things they did when they designed the Ed Roberts Campus is they designed it so that the multi-use bathrooms have four stalls, and all four of the stalls can accommodate a person using a wheelchair. And they are different configurations. Sometimes the toilets' coasted to the left hand side, sometimes in the right hand inside, sometimes the stall is deeper, sometimes the stall is wider so if a person wants to do front on transfer, side on transfer. And one of the bathrooms there has an overhead lift available for anybody who happens to show up. So there's a lot of ways they thought through the fact that the disabled body that needed access was the presumptive user, and then they made the design usable for everybody else as well. But instead of making the disabled user the last thought, they made it the first thought.
Aimi Hamraie:
And kind of builds in a lot of diversity in terms of who is a disabled user. So kind of to me, one of the things that that also does in addition to the functional element of more people can actually use this space, is it challenges those types of narratives. Like the people you were talking about at the demo BART car, where they're like, “Oh, well, a disabled person told us that this works for them. So therefore, it must be accessible for everyone else.” Like it challenges those types of narratives to really think about a broader range of who counts in the category of disability.
Corbett O'Toole:
One of the things I've encountered that also feeds the problem is the way that systems collect information to tell them when there's a problem. So for instance, I'm part of Kaiser, which is a very large health system here and people who use power chairs that have to buy power chair equipment through them, have had a ton of problems. And so about 25 of us sat down with their management for over a couple of years to talk about ways to evaluate the problem and to figure it out. And what we walked away with was their data collection system had no way of telling that this problem existed.
Corbett O'Toole:
For instance, their grievance procedure presumes that the reason you have a grievance is because you didn't get to talk to the right manager in the right department. So if I say I have a problem, they take it, they'd send it to the manager in that department and that manager calls me and says, “Oh, I'm sorry, let's figure it out.”
Corbett O'Toole:
That's great. If the problem is that I waited too long in line for a prescription, but when I'm calling to say the lift on your shuttle that goes back and forth from the public transit to your facility is broken, that system has no way to capture that problem. And so it never gets fixed. So the next day, that same lift is still on the road. Whereas, if a system that said, “Oh, this is a different kind of problem.” And also when they collected data ...
Corbett O'Toole:
So it's an interesting kind of mix where if they don't ask the right questions, they don't get the right answers. And when we tell them there's a problem, they tell us about how great their data collection was and how hard they work to evaluate the problem. And it's not a problem that they can see.
Corbett O'Toole:
Let me give you a very truthful, but very unbelievable example. So Jesse Lorenzo is a blind woman who was the head of the independent living center at San Francisco and she was invited to visit Facebook to their Empathy Lab. And their Empathy Lab is specifically, and I'm kind of using air quotes here, “empathy” because it was really about how can our products better serve people with disabilities, what are we missing. So she goes to visit and now Jesse's been blind her whole life and has had many guide dogs and always has these really high end, extremely well-trained guide dogs. So she goes to the lab and they said, “Okay, just follow us.” And the person ahead of her starts up the stairs and the dog won't go and the dog won't go and the dog won't go up the stairs. So she's like, “How about if we take the elevator?”.
Corbett O'Toole:
Now this is a building that was built in the last year and they said, it was a two-story building, and they said, “Oh, the elevator is only for the people that do the trash collection.” And she's like, “Excuse me, like what would happen if you know my friend Corbett, like what would happen if someone had a wheelchair would come in?” “Oh, we wouldn't have them come to this building.” The “empathy” lab building. Because the trash cans live in the elevator.
Aimi Hamraie:
Oh.
Corbett O'Toole:
So they refused to allow her to use it. So she says, “Okay, so tell me what's going on with the stairs.” And they're like, “Well, they're just stairs.” And she said, “Well, you know ... Is it the risers?” They built them out of plexiglass. They're completely see-through. The dog knows that there's no way for the dog to evaluate. And also whatever you call the back part of a stair, not the flat riser part was missing. That back wall. So the dog was looking at something that if it looked down, the horizontal surface was clear and if you looked forward, it was completely open. So the dog had no way to evaluate in its training whether or not this was safe for Jesse to actually walk on, and it was such ...
Corbett O'Toole:
And so like all the pieces of that. The Empathy Lab is upstairs, nobody in the wheelchair can use the elevator to get there, it's not accessible to blind people that use guide dogs. I mean it was so ... And these people have more money than God and they have more ability to think through this and yet the best and brightest brains are thinking that because of course you and I know there was not a single disabled person that was consulted with any ... Other than maybe their own personal knowledge that could give them ... As you said, it's the Bay Area, there's a million people that know this stuff, there's a million people trying to make money off of telling them what to do. So the whole thing is kind of, in a kind way, befuddling.
Aimi Hamraie:
You know, it kind of reminds me of, I had gone to a popular music venue here in Nashville and they were using a smoke machine and I had an asthma attack. And so I asked them to air out the space and turn off the smoke machine and they said no one else has complained about it. I'm like having an asthma attack, and using my inhaler and there are people with me and stuff and that was their data. It was like, according to the data that we collect, which is people coming and complaining about this, there's not a problem so we're just not going to address this. And in the end, they thought that it was sufficient to just refund my ticket basically, which is the opposite of what the ADA is supposed to do [crosstalk 00:30:00] access.
Aimi Hamraie:
But that sort of like, well we know things and they don't suggest what you're saying, even though you are producing evidence of this, that happens a lot. In all of these kinds of examples that we're talking about, the BART design, safety testing. Probably somebody safety tested those plexiglass stairs who did not have a fear of heights and vertigo or a guide dog. And yet there is some source of evidence that's being pointed to, to challenge any kind of complaints that come up. And so to me that suggests that one of the really important things that needs to happen is exactly what you did, which is to collect alternative forms of data. And that seems a really significant part of the process of how disabled people designed things differently and think about design differently than the way that these established institutions and kind of like professional designers who are trained in certain ways are likely to do it.
Corbett O'Toole:
Can I just stay on the data point for one more second? One of the things that I notice that happens, there's two parts to that problem I want to point out. One is that the systems, because disabled people are “sick” and treated as ill and treated as belonging to the healthcare system. And because the healthcare system groups us only by individual diagnoses, not even by multiple diagnoses, we end up with a situation where we disabled users see patterns. So like I can say to you that a problem with the BART fare gate is a problem for me, for slow walkers, for people that have suitcases, for people that are using strollers. But according to the system, we're five different populations and they think that we're five different solutions. So in general, lots and lots of times, the people, when we say there's a problem, they're not seeing the problem beyond the one.
Corbett O'Toole:
So I get that all the time, nobody's complaining but you. And I watched the other day, when I was at BART, there's two elevators at my BART station and they go to two different parking lot areas. And one of the elevators was off. And according to the contracts we have with BART, that's supposed to be reported. But the agents said, “Oh no, we don't report that one because there's also a very long ramp that goes around it.” So we just assume that people will use the ramp instead of the elevator. So it doesn't get reported. But while I was watching there, 12 different people came up to use the elevator and not one of them reported that it was out. They left. And so this presumption of we have to report it in order for them to know it. And yet I've never had a situation where when I'm reporting anything to any entity, an actual person in charge is actually writing down the information and passing it along in a way that's usable.
Corbett O'Toole:
So in their system there's no problem because it's not being captured. And then on the other end, I got this email from Kaiser that said, we would like access to your health records, no, no name, but we're collecting aggregate, you know, how many people stopped smoking, how many people have heart attacks, whatever. And I said, “Great.” I wrote them back and said ... And they were bragging about how many millions of hundreds of whatever of data they had. And I said, “Great. So where is the data that breaks out by either disability category or ambulatory, non-ambulatory?” Because I have a heart condition and my cardiologist and I are trying to figure out, is it related to my polio, is it related to my ethnicity? Like what, what are the factors that ... Because I was completely asymptomatic because I was a wheelchair user so I didn't have the walking people symptoms. So he and I are very concerned about my health, but also having knowledge to be helpful to other potential patients.
Corbett O'Toole:
And I got this letter back, this really pissy letter back, email, that said “We help everybody. I mean our data is for everybody and we help everybody and there's absolutely no need to do what you're suggesting.” So I have a great personal physician and she's queer and she's in the system particularly try to help trans youth get better health care. And I said to her like, “What is going on?” And she said, “It's about money. They will not spend the money to break out the data, even though they have it, for trans youth, for disabled people, whatever because they don't think that these populations are really worth knowing the data.” So it's hugely problematic to me that I can see a problem, disabled people can see a problem clear as day, but we don't have any access to report it in a way that it gets to actually even say. We don't get taken seriously when we do report it, when it does get reported.
Corbett O'Toole:
I mean I now call this stuff public shaming. I mean BART responded to this problem not because they believed disabled people, but because we got them on the news and now they're on the defensive. And I just want to say one point you've mentioned earlier, and the only thing I had to do was post one picture on social media. Like the power of one action of just saying it. That's all I did. I did nothing else except post one picture and say, “These are the new fare gates. I'm worried about getting hit on the head. I think these other populations might be impacted by this.” And that's all I did. Everything else was generated by people who also thought this was problematic.
Aimi Hamraie:
Yeah. So that idea of leaving evidence, kind of thinking about Mia Mingus' blog. I think that there's a lot of interesting stuff to do with this. Going back to the elevator example, a graduate student who's in my Design Lab. Her name is Leah Samples. She's a disabled person and she frequently encounters broken elevators on campus. And so she got the elevator, broken elevator complaint form from facilities and she noticed that there was nowhere on it to explain the impact of the elevator being broken or how often it had been broken or anything like that. So when a ticket went in, it was just like, oh, it's broken. But whoever's job it was to fix it wouldn't know that someone literally cannot get to their office for the fifth day in a row or something like that.
Aimi Hamraie:
And so she did a whole design charrette with other disabled people to redesign the form. And they also did a thing where they like critiqued the form. They put these kind of stickies all over it that explained how all the different parts were problematic. And then now they're doing this participatory design of the form that basically forces the institution to collect a different kind of data using the language and metrics and standards of evaluation that matter to the users who are most impacted by it. Her project is so interesting, could be a model for all sorts of things like this because she didn't get any kind of buy-in institutionally.
Aimi Hamraie:
She's at a different university, but she didn't get any buy in institutionally. She just did it and then gave it to them. And they were actually really grateful that she had done this because they wanted to not have broken elevators, but they just didn't know how many people were being affected by it basically.
Tune in Next Time:
Hey, Aimi here. Just to let you know that we're about halfway through this conversation. And the remainder will be in the next episode, which will be out in about two weeks. so please remember to tune in.
Outro:
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