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Disability pride flag, with wheelchair symbols in disability pride flag colors diagonally across the graphic. (Graphic by Lissa Deonarain)
Disability
“Disability: Our Culture Ourselves”— in this episode we discuss disability, culture and identity from the perspective of disability communities themselves.
Seattle based activist Dorian Taylor talks about the specific challenges disabled people face while accessing public transportation and Professor Sara Acevedo discusses the powerful ways that common language and terminology can shape our perceptions of disability, and why even today we are seeing further exclusion of disabled people.
Special thanks to CIIS, the California Institute of
The story of Dorian Taylor was produced by Yuko Kodama and Mona Yeh in partnership with KBCS and Finding America, a national initiative produced by AIR (Association of Independents in Radio Incorporated). Financial support was provided by the Corporation for Public Broadcasting, the Wincote Foundation, The John D and Catherine T MacArthur Foundation and the National Endowment for the Arts.
Featuring:
Making Contact Team:
More Information:
Note: At the time of this interview, Dorian had not yet received gender-affirming surgery, and refers to himself as “female-assigned”
TRANSCRIPT
[Making Contact ID]
Dorian Taylor: For me as a paraplegic, this wheelchair is an extension of my body. It’s not just a mobility device. And I think a lot of people can’t grasp the concept that when you grab a person’s wheelchair. Who uses a wheelchair all day, every day, you’re grabbing their body.
Sara Acevedo: What happens to a disabled body that does not produce at the rate of capitalism? It becomes ejected. It becomes labeled as deficient and inefficient against the system that is totally arbitrary and are absolutely external. To the life of the body
Anita Johnson: On today’s episode, Disability: Our Culture Ourselves will take you on a bus ride in Seattle to experience a day in the life of a disabled passenger. And we’ll hear from Sara Acevedo, a disability study scholar who explores culture and identity from within the disabled community.
Sara Acevedo: When I claim or I tell someone, oh, I’m autistic, and they’re like, don’t you mean you have autism because like you’re human first.
And so that makes me think what autistic people are inhuman inherently?
Anita Johnson: That was Professor Acevedo. Now let’s hear from disability rights activists, Dorian Taylor, and the particular challenges they face while accessing public transportation as a paraplegic. Here’s contributor Mona Yeh with the report.
Dorian Taylor: How you doing?
Mona Yeh: Good.
Hi, I’m Mona Yeh. That was Dorian Taylor getting on a bus with me. We rode from Dorian’s home in Tukwila to the south downtown neighborhood in Seattle. Dorian is paraplegic and a wheelchair user due to a traumatic incident with police five years ago. Dorian moved to Seattle to seek better medical services and is now training for competitive sprint kayaking. Here’s the dispatch.
Dorian Taylor: To get to training I travel from Tukwila to Bothell. It’s about a two hour trip one way. I don’t drive. Access is also very unreliable, so I catch the bus for everything. I do most of my own grocery shopping, go to doctor’s appointments. It’s my main method of transportation besides my wheelchair. For me as a paraplegic, this wheelchair is an extension of my body. It’s not just a mobility device. It was literally specifically built for my paralysis level, for my sensation. I think a lot of people can’t grasp the concept that, when you grab a person’s wheelchair who uses a wheelchair all day, every day, you’re grabbing their body. You’re grabbing their physical person. I get a lot of that. People will just grab me and drag me and passengers.
When I speak up about this, bus drivers tend to ignore it because they’re just trying to help. And as a female-assigned person, that puts me in a tricky situation because I’ve had people that weren’t just trying to help and I don’t get the same amount of protection as anybody else. The chances are, they’re gonna defend the person that grabbed me.
We’re not used to seeing people with physical disabilities be independent. That reflects on the policies of Metro and it reflects on how somebody like myself, who is pretty independent and can strap themselves in and all this, it’s how we’re treated on the bus. So people don’t act like I know what I’m doing. They act like they’re gonna know my mobility aid or how to strap it on better than me. I think a lot of people also don’t realize how much these cost. This is $6,000. Just the cushion alone is $700. This seat back’s $800. That alone should be a reason why a bus driver should just listen to you when you’re talking about your mobility aid.
An electric chair, you’re looking at $30[,000] or $40,000. I need this. This is my everything. It’s considered damage to private property. It’s not considered bodily injury, but if you break my wheelchair, I feel like you injured my body because you’ve literally destroyed my mobility. You’ve destroyed the ability for me to just go to the bathroom without crawling. It’s really hard to explain to bus drivers that not every single chair is the same. Not every single wheelchair user is the same. You don’t have the same mobility as she does. So why would I have the same mobility and the same needs as the next person whose wheelchair you can buy at Walgreens?
I’ve had bus drivers…I’ll let myself unstrap myself go up to the edge to wait for them to put the ramp down. I’ve had bus drivers grab me by the chest, like I’m just gonna roll off the bus while they’re in the middle of putting the ramp down. And I had a bus driver literally tell me, “Well, I’m just doing my job.” And I said, “So your job is to grab people and treat them like children?” I’ve got left before to the point that when I used to catch the 120 downtown, houseless people would stand in front of me to make sure I got on the bus, ’cause they got tired of seeing me left. I’ve had a bus driver pass me up at the bus stop because he wasn’t looking down, and then stop, but tell me, I couldn’t get on because he didn’t wanna let the ramp down in the grass. This is the same bus driver that refused to tell a blind person where their stop was because they didn’t have a white cane. It’s such an issue.
When I started working with the Transit Riders Union and reading the policies. Well, the problem is in the policies. Dirst of all, they basically tell the bus drivers you need to make sure this person is safe. But there’s never anything about consent, there’s never anything about the person might know their safety better than the next person. When I lived in Portland and when I was in New York City, you actually have the option of whether or not you can strap yourself in. Because in reality, it’s actually really dangerous for me, for my chair to be strapped in. If the bus gets in a wreck, I’m just gonna fly outta my chair. If I was just locked with my wheel locks, I’d be fine.
That’s how I rode in New York. That’s how I rode in Portland. But here it’s actually really unsafe and it’s causing all of this damage to my wheelchair on top of it — damage to the alignment, replacing screws and bolts and things like that. Your only other option if you don’t wanna fly outta your chair, it is to be restrained. That’s where you got straps. I couldn’t even grab what I needed to grab to take care of myself. So that’s not an option either. The main problem, I feel with the policy is, um, they glance over it and there’s no actual training on how to interact with people with physical disabilities. And if you see the way people with physical disabilities are treated in our society in general, we’re infantalized in a lot of ways.
The problem that we get with teaching it as an afterthought and there being absolutely no consent in the policy and the policy itself being really patronizing, is we have these different interpretations. You have a bus driver that will let you on first, let you strap yourself in. You have bus drivers that lie to me and tell me that the policy on how you strap yourself in is completely different — you have to strap yourself this way and that way. Yesterday I get on the bus. He strapped my tire, both here and here on the hand rims. First of all, this is quick release. So that’s like the most dangerous place to lock up your chair. So I told him, next time could you not strap that here? Because just that’s a really unsafe place to strap wheelchairs, especially everyday wheelchairs.
And I showed him this and then he started giving me hassle and then I noticed that my wheels had been a little wobbly. So I was pushing off the bus and I was like, “Look, I’m the one that ends up paying for the damage and these wheels cost $700.” Then he tells me, “You just tell me how to strap it up.” And I was like, “You know, actually next time I ride your bus, I’ll strap myself on. Save the hassles.” And he told me straight up, “The next time you get on my bus, I’m not letting you on.”
And that’s actually a pretty mild incident, but what had me cold is I went to push up the hill and my tires are wobbly because they were pulled by here and these are $700 rims. I cannot afford new wheels. Because of how I end up paralyzed I’ve got pretty bad PTSD and people grabbing me without my permission, it sets that off. So I’m not in a good mood when I ride the bus. And I have to prepare myself mentally to be able to catch the bus and I have all my things on my person like super close. I make sure that there’s nothing that would even make anybody want to just reach out and grab me. Like I try to make sure like everything’s just in order so no one would touch me.
Bus Driver: Alright, that good?
Dorian Taylor: Actually, do you mind putting ’em right here?
Bus Driver: Cool. Sure. Yeah.
Dorian Taylor: Thank you. That’s, that’s where my chair folds down, so that’s a hinge there.
Bus Driver: Yeah. Yeah.
Dorian Taylor: I got red tape on the one side. I ran out on the other. Thank you.
Dorian Taylor: Uh-huh.
No, that was, see, that was golden.
Mona Yeh: We were fortunate enough to have a hassle-free experience on this bus ride. However, Dorian’s reality is that every day and every ride is unpredictable. Before leaving the house, Dorian has to mentally prepare for the ride. Amidst constant healthcare trips, the long commutes from Tukwila to Bothell for kayaking offer critical value to Dorian’s life.
Dorian Taylor: I just needed something I was gonna snap. I was gonna lose it. That’s how I got involved in sports and that’s why I like kayaking so much. ’cause it’s the only place I can be where I don’t think about all of that.
(music)
Anita Johnson: That was a ride along with Dorian Taylor. Dorian is currently working on communicating with Metro Services to find ways they can better serve individuals with disabilities. Dorian is carrying forward the efforts of the disability rights movement that began in the 1960s and continues today. The main slogan of that movement is, “nothing about us without us.” Meaning, no policy should be decided without the full and direct participation of those affected by that policy. The story of Dorian Taylor was produced by Yuko Kodama and Mona Yeh in partnership with KBCS and Finding America. You’re listening to Disability: Our Culture Ourselves on Making Contact.
Up next, we’ll hear Disability Studies scholar Sara Acevedo break down the powerful ways that common language and terminology can shape our perceptions of disability and why even today we are seeing further exclusion of disabled people.
Sara Acevedo: Everything disability is grassroots. Just think about that, like the history of disability rights in the first place is grassroots, like people climbing the capitol steps, throwing themselves out of their wheelchairs, throwing their crutches. Climbing those steps. Invading, sort of occupying that, those were people — everyday disabled people who were being intently marginalized from various aspect of everyday life. And sort of how Disability Studies kind of was born out of those grassroots struggles and became institutionalized, as it so happens, that grassroots knowledge becomes institutionalized and co-opted instead of reinvented or reincorporated into this wheel of reproduction. Not only in terms of like reproducing exchangeable goods.
We understand education as an exchangeable good right? Which is a heartache, but also in terms of like this absorption of knowledge. Knowledges in plural, turning it into this top down approach to, oh, this is like the seriousness of the fact because we have put it in an academic book. Right. And I am not whatsoever excusing myself from that, ’cause I am very much a part of it. I reproduce disability as anybody else who studies disability as a disabled person. And let me tell you, as a disabled person, obviously I wanna study alongside somebody. I rather that disability issues are taken up by disabled academics. Lemme tell you the truth. And as much as I wish, for instance, that I could go to therapy and my therapist was autistic.
So disability studies is kind of in this sort of strategic infiltration space of like, let’s legitimize our grassroots struggles and like sort of institutionalized them so that they are recognized within this sort of like matrix of dominant knowledge and sort of like ways of producing knowledge that are considered legitimate because they have a seal, because they’re accredited. There is a process of separation of disability studies from disability grassroots struggles. There’s no doubt that that’s occurs. It occurs with anthropology, it occurs with sociology and with many other disciplines. I’m telling you all this because I wanna talk about a model of understanding the disability experience that was emerged from the work of disabled grassroots activists in Britain in the 1970s, and that they were working together. So disabled activists who were living in the community with disabled people who are still institutionalized and being brutalized and dehumanized within institutions of care for the disabled.
Working in collaboration, they started thinking about the ways in which society disabled different bodies. There’s an active process that happens, and that process is called the process of disablement, right? Those that given fancy terms were brought into academia by disabled British sociologists, drawing from this experiences of grassroots struggles and brought it to bear onto this model that had prevailed. The history of any study of disability — not Disability Studies, that’s different — any study of disability, about disability, on disability, without disabled people, it’s known in disability studies as the biomedical or individual model of disability, which understands disabled bodies as inherently individually deficient.
So it’s an inherent problem of the body. It has nothing to do with the societal circumstances, ideologies, practices, attitudes, institutional approaches to different embodiment. No, the disability is just a natural, organic occurrence, and it’s a deficit — needs to be cured, needs to be hidden, needs to be manicured, needs to be prosthetic size, needs to be handled, needs to be observed in confinement, right? This has been the tradition, the long Western tradition of understanding and managing and administering the disabled body through a biomedical perspective.
That unfortunately is the perspective that continues to prevail today. After 40, 50 years of struggles by disabled people, grassroots, academics in collaboration, artists, performers, poets, you name it, there is still this understanding of disability from this deficit perspective. So these academics, like this British sociologist, were trying to be like, “Look these people on the ground,” They talked about a social perspective of disability, which locates the problem outside the body.
It is not different in embodiment. It is not the different body — different, that also in quotation marks — that’s inherently problematic, that’s inherently burdensome, or that’s inherently abnormal, right? It is actually the social structures, practices, policies, institutions, interpersonal relationships that produce disability into a category of deficiency, and therefore a category of social oppression in every aspect of life, right? This battle sort of begun, right? It was disabled intellectuals fighting against the rest of the world in terms of this academic traditions and like schools of thought that had been like totally established and disabled academics and intellectuals — not even disability studies yet, but just like within sociology, we’re like, “Look at us, we’re disabled. We’re talking to you.” And the disciplines were like, “You can’t possibly be an academic. You can’t possibly be an intellectual ’cause you’re disabled. We don’t know what you’re talking about.” So it’s this power relationship and this in imbalance between both two camps, so to speak.
It happens that the social model has informed. Many of our contemporary struggles, it continues to do so because it brings the idea of disability to bear on the material reality, concrete reality of the disabled body or of disabled bodies in a way that we cease to exist within this platonic realm of ideas, and narratives and metaphor, because disability is a very useful metaphor. Let me tell you. For writers, oh my God, it’s like the primer, like “Let’s go to disability and use all this imagery about collapsing societies through the image of disabled body in a way is to detach it completely from the realm of material experience from the very experience of disability, from living disability.”
So living disability is embodying disability, which we do, which disabled people do. We embody that thing, we celebrate that thing. We struggle with that thing. But in insistent on an erasure of disability and disabled people from producing everyday life and from producing the world, that’s why we continue to circulate US metaphor as charity cases are pitiful. That is not how we understand ourselves. That is not how we see ourselves. That is not how we represent ourselves. Disability, culture, huge depth, vibrancy, richness, multilayered of experience, and deliciousness and just like multifaceted ways of looking at our bodies in a three dimensional perspective as opposed to this flat allegories. One of these examples in the Bay, like Be proud Sins Invalid and LATIB (phoenetic) is part of Sins Invalid, it is this performance troop of disabled artists of color centering queer and gender nonconforming experiences, and bringing sexuality and sensuality in your faith. Because a medicalized experience or representation of disability is the perpetual infant body, the nonsexual body. That is the mainstream, that is completely dissonant with the way we live our lives and experience our bodies as pleasurable.
We experience those body, our bodies, as pleasurable. We experience experience our bodies as oppressed. We experience our bodies as interdependent. We experience our our bodies as this huge amalgamation of greatness. Of possibility of hope outside of this binary construction of the deficit and the perfect body. What is the perfect body? What is the able body? Doesn’t the able body need the disabled body in order to exist? Doesn’t it need to be constructed again, like in tandem? Like how else do you define an able body? Everything that a disabled body isn’t is the able body. So we still, we’re still needed, like the able body needs us disabled bodies to reproduce itself in this hegemonic hierarchical way.
So think about the division between normality, quote unquote, and abnormality, which are both historical. They’re constructs like abnormality and normality don’t just exist in a vacuum of like. Organicity or that’s just the way it is. “Things are the way they are there. The white supremacy is just a natural occurrence of the hierarchical.” It isn’t. It is a product of social relations that exists within very specific value systems and ideologies. So what I wanted to do today, Melissa, was invite you to like really think beyond the binary, to just really dig deeper and look at the contradictions that exist, like beyond within and the outside of those binaries that are so limiting and are so oppressive.
Another thing that I see so often with my students and just people in general, that’s been like a really rich terrain of addressing this from the perspective, not of a professor who teaches stuff about disability. No. As a disabled professor who teaches about disability studies is this an engagement with ableist language every day. Ableist languages. Metaphorical iterations, but in a more sort of like everyday sort of casual way. “Oh, the weather is so OCD, that is an insane film.” People don’t usually think too deeply about the histories. That exists behind the usage of this labels and these words. They have a history just as much as abnormal. The construction of normality and abnormality has a history. These words that we use so casually in such arbitrary ways today. “That’s crazy. OCD. I was blinded by it. I was blind to it. It was a blind spot. It’s a crutch. The economy’s crippled,” which is not the same as reclaiming Crip Culture.
Lemme tell you, that’s a very different iteration, right? There is a history, and the history is a history of the brutalization of disabled bodies in the creation of nation states, and the separation of bodies and stratification of bodies. Again, in terms of who belongs and who doesn’t belong. I mean, we can’t give citizenship to everybody. We gotta create citizenship in a dialectic with non citizenship. ’cause then how can citizenship exist on its own? We gotta create nationals and immigrants otherwise what is the one doesn’t exist without the other in this very dialectical oppressive tension, which is also a tension that produces resistance.
The deployment of ableist language to create affect among audiences at the expense of disabled people, you know? So yes, the histories behind these, uh, deployments are really torturous. They are real. They are part of a history that’s been mostly erased from dominant understandings of the body. And those are the histories of the asylum in conjunction with the birth of psychiatry in the 19th century, scientific racism and the production, the systematic production of these labels that would then determine humanity and non humanity, humanity and sub humanity.
Anita Johnson: You’ve been listening to Disability: Our Culture Ourselves on Making Contact. Special thanks to CIIS, the California Institute for Integral Studies and the CIIS Public Programs Podcast for use of the Sara Acevedo talk. To learn more about CIIS Public Programs Podcast, log on to www.CIISpodcast.com. For the rest of the Making Contact team, I’m Anita Johnson. Thanks for listening to Making Contact.
(music)
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