“Interrogating Transability” with Bethany Stevens

In this podcast transcript, Bethany Stevens advocates acknowledging that the prevalent definitions of disability are too narrow. She sees ability and disability as part of a wide spectrum, and says activists and scholars should frolic all over that spectrum and have a good time.

This is Anthony Tusler, host of the podcast series “Telling Our Disability Stories”. “Telling Our Disability Stories” is sponsored by the Accessibility Technology Coalition in partnership with the California Emerging Technology Fund. Once a month we bring you thoughtful and personal interviews with people in the disability communities. If you have any questions please e-mail me at podcast@aboutdisability.com.

Today I want to welcome Bethany Stevens. She is a political instructor and policy analyst for the Center for Leadership and Disability in the Institute of Public Health at Georgia State. She was a Center of Experts for Sexual Health scholar at Morehouse School of Medicine. She holds a Juris doctorate, a Master of Arts degree in Sexuality Studies, and is a member of the California Bar Association. Whew! And, most recently, she received an Irving Zola Emerging Scholar in Disability Studies Award for her article “Interrogating Transability: A Catalyst to View Disability as Body Art”.

And that’s where I discovered that I wanted to talk with Bethany a great deal more. I heard her presentation on the Interrogating Transability paper at the Society for Disability Studies last June in San Jose and I was just very taken with the breadth of her studies, the thoughtfulness about disability, all of the issues that transability raises, so, welcome Bethany.

BETHANY: Well, thank you, Anthony. That was a very nice introduction, I’ve been grinning the whole time.

ANTHONY: Well, thank you. Well, let’s start with, what is transability? Let’s define that before we go any further.

BETHANY: Yeah, that’s a great place to start. Well, transability, within the work that I am analyzing, are people who are not physically disabled who need to be, or know internally that they are physically disabled, so they’re seeking surgeries to get those disabilities, the most common of which among those individuals are people who want to have amputations. That’s where most of the research has been done around transability, but my paper, I interviewed a quite famous transabled advocate, Sean O’Connor, which is the pseudonym he chose. He started transabled.org, which is a blog site for transabled people to talk about their experiences. But he’s unique because he needs to be a person with a spinal cord injury, so he’s been living publicly as a wheelchair user for over ten years. Fascinating story, and I open the paper there, just because it’s a great place to start with a narrative, jump right into the subject.

ANTHONY: Well I like starting out with Sean for so many reasons, partially because he is looking to pass as a spinal cord injured person using a wheelchair, but also his involvement in disability rights, and all of those activities that are really so close to my political heart.

BETHANY: Right. Yeah, that was a big piece for me too, and that’s why when I grappled with some of the ethical issues around transability and some of the hostility that the disability rights community, or some of the members of it, have towards this issue it really challenged me because he is so dedicated to the disability rights movement, he does so much work around this stuff, so some of the hatred that I would viscerally feel, or that I initially viscerally felt, it was really tempered because of that. There was something that just really challenged me. He pushed me. And also we spent so much time talking, throughout my whole experience of researching the subject, I continued to talk to him, and it really just humanized the experience in a way that I don’t think you can get just by reading articles about this identity. It’s actually talking to what he, talking to him about how he’s suffering, what it feels like to be in a body that you don’t want to be in or weren’t supposed to be in, it’s just completely fascinating. It really pushed me.

ANTHONY: I think that was the hook for me, the personalization of it and how Sean really came through in the presentation of your paper, where I felt an immediate bond with him. My first thought was that he is a member of the tribe in the sense of that greater umbrella that covers people with disabilities in its broader sense, because having worked in providing disability services at a time when we were really defining what disability was I’ve had to realize that learning disabilities are a disability, that people who are considered fat fit under the category of disability in terms of accessibility, even people who are left-handed oftentimes need the same services. And so for him it was a very recognizable phenomenon for me to go “oh, okay, here’s another one, and he’s going to be pushing me and pulling me, and thank God, because I need that so this work doesn’t get stale”.

BETHANY: (Laughs) Absolutely. I mean one of his taglines, he has several soundbites or taglines associated with his work on transabled.org, but it’s that “Transability is just another disability”. But in my paper I explore how, whether or not they actually do get to the space where they can get those surgeries to become physically disabled, they are members of the tribe because they are dealing with some kind of disability, and that may be mental health, but they are with us. I definitely feel that, as well. And it’s taken me, I have been working on this project for I, I would say about three or four years, and it’s taken me a lot to get to the point where I am, like, ready to say “welcome to the tribe”.

I’m ready to explore even how people who are performing disability, like Lady Gaga using a wheelchair, Daniel Day Lewis in the left foot movie, My Left Foot, just looking at how those things fit within the spectrum of transability, and how that moves those individuals who are performing disability into what you call the tribe. I’ve never actually called it that, but I’ll go with it for now. The game.

ANTHONY: Right. This is very strange. When you mention Daniel Day Lewis, particularly in the context of transability, I actually got a little teary, and it’s because I consider Daniel Day Lewis’s performance, as well as from Coming Home, Jon Voigt, I consider both of those very true portrayals of disability, and for me it mattered less that they had disabilities than the true portrayal, and talking about Daniel Day Lewis in terms of transability, it justifies that belief that I’ve got. And I’ve got to say as a caveat this does not excuse Hollywood’s horrible lack of hiring people with disabilities, that’s another issue.

BETHANY: Anthony, you beat me to that point, darn it! And so I do absolutely agree with you. But right now I’m in this space of just trying to explore moving away from this anger that I feel about non-disabled people performing disability and trying to see this as a space of opening up possibilities of reclaiming disability and seeing disability as beautiful and as a performance. And I think Lady Gaga actually takes it there because she’s not doing a sort of realistic disability performance. She’s not performing cerebral palsy like Daniel Day Lewis did, with certain exaction. She’s just riding around in a wheelchair. And I think that that even expands this whole concept even farther. How far can we bring this idea of performing disability and what does that mean if we start accessorizing ourselves with assistive devices, and making disability chic? I know that it’s still very much a contentious issue, and it’s not something that’s fully developed in my head right now, it’s something that I’m working on, hopefully to present at Montreal soon, but I’m really interested in how Lady Gaga is pushing that. And largely because you know she had this song “Born this way”, of course, and disability is mentioned in a positive light. There’s an affirmative reclaiming of disability and I’d never ever heard that. And so I’m just really wanting to see her as another push, moving beyond just a realistic portrayal of disability, and just playing with it and what that can mean for us.

ANTHONY: Your central thesis, if I’ve got it right, is that transability allows us to look at disability as an art form. It is this performance of disability that really captured your attention more than anything else. I feel like I’m not being as articulate as I’d like.

BETHANY: No, you’re fine. I think that’s where I initially started, because I place transability within a spectrum of body modification, looking at how it’s similar to elective cosmetic surgery, transgender reassignment surgeries, and even body modifications as ubiquitous as tattoos, piercings, hair cutting. So that’s where I was placing it within body modification and body art.

So if we take on this idea of transforming into disability, then that necessarily brings disability into the sphere of art. But that’s where I think I started, and I moved beyond that. When I submitted to the Zola I realized that there were still all these issues that..., I closed with something different to art and it was really just like questions, and it was really, really hard to submit a piece that I ended on questions, because I figured that scholars are supposed to always know the answers to the questions. And my questions were all just “What does this all mean?” I’m still grappling with it so yes, that is a central precept, but I don’t know if that’s where it’s going to go completely.

That’s where I was then, and where I am now is just filled with questions and looking for different ways to explore this, and welcome this. I’m tired of the visceral response of anger towards transability because as you say, they are a member of the tribe, and we do need to be more cross-disability focused and we fail our brothers and sisters by not doing that.

ANTHONY: Absolutely. I brought up the article and it’s, your final phrase is “So long as they bring with it a full commitment or artistic integrity to the disability experience.” And I think that for me really sewed up the whole article and said “Ah, okay, this is such a solid thing because it is about authenticity but not are you really a wheelchair user, but authenticity in the sense of this is disability at its deeper level.

BETHANY: Right. I also think that this opens up space for talking about people who intermittently use assistive, devices or have disabilities that change, like Multiple Sclerosis, and how within our own community we police each other, and want to know “Why are you using a wheelchair now when I saw you walking two weeks ago?”

I think this is completely inappropriate that we do this to each other and I think this transability stuff really does encapsulate that and really I think should generate a conversation we need to be having about the fact that sometimes our disabilities are fluid and that is okay. You know, ability and disability are not static binaries. It’s a spectrum and we need to frolic all over that spectrum and have a good time.

ANTHONY: Right.

BETHANY: I feel like this is a call to action to celebrate disability, and that was a really interesting place to end on, because in the beginning I was very, very hostile. So it’s just really interesting to see over the three or four years that now I feel this is a place to dance, to sort of quote Lawrence Carter Long, the dance model of disability. It’s just really fascinating that I’ve changed that way. And I hope that some other people can join me in this sort of thought movement.

ANTHONY: I think it’s absolutely appropriate. Part of, early on in the article you talk about how some people are angry or probably, there’s your anger in the beginning. You know, well, you know he doesn’t have to buy catheters, he doesn’t have to do this or do that, I’m talking about Sean O’Connor again, and to my mind that’s not what disability is about. I mean I know people who, I mean I know someone with a, who was badly burned and his face is really atypical, and I consider him a disabled person, he considers himself a disabled person, and yet he has very few “disability” needs.

BETHANY: Hmm. That’s a really good point. It’s one I actually hadn’t thought of. But some of the more ethical issues that I do, I still do have an issue with, and that is the, what came up in our interview which he doesn’t disclose elsewhere, so I’m waiting to hear his response to this. I did send him drafts early on so he knew I was going to disclose this, that he does walk around his house.

ANTHONY: Right.

BETHANY: You know, it’s expensive to make a house accessible, but the fact is if he were a person with a spinal cord injury he would be immobile in his house if it wasn’t accessible. And the fact that he actually admitted that it takes a lot less energy to do laundry and dishes and various activities from a wheelchair, I, there’s still a little bit of resentment there, but, you know I don’t think anything is black and white. I mean I try to think it is, I want to believe in that like a 12-year-old, but increasingly my mind is made open to the fact that it’s just not true. So there are still some lingering issues that I’m a little frustrated with but nobody’s perfect. I don’t know. There’s always a balance.

ANTHONY: Well, I think if we go back to talking about MS, which is quite a variable disability, it’s not unlike someone with MS who happens to be having a good day and can stand to put things in the washing machine, at least from my perspective. I don’t know. I have to admit that I don’t have anger at this guy, you know. The only kind of uncomfortableness I get actually is, you quoted a wheelchair dancer about her unhappiness about Sean O’Connor’s masquerading, and that we can’t all dance under the tent saddens me to a certain extent.

BETHANY: Just to clarify the wheelchair dancer’s quote, that was not with regard to Sean O’Connor -

ANTHONY: Oh, okay.

BETHANY: - that was with regard to someone else who was transabled, so that was a more of a discussion of transability broadly, not specifically about Sean O’Connor. And I do, I do hear what you’re saying and I actually more, you know, if I were to analyze the emotions that I feel around this issue it would be probably 85, 90 percent good.

I can’t help it, I have a litigious spirit, -(Anthony laughs)- I’m very uppity, I like to rant, I like to argue, so I’m me. I could say the same thing about my wife, who I love very much, that, there’s a part that I don’t like also and I’ll say that, so I mean it’s not that I’m not welcoming Sean under the tent because of this issue. And it’s not that I’m holding deep resentment. I really do like him as an individual, but I mean I’m always going to problematize something. I think, and you know I blame grad school for this, I can’t even watch a movie anymore without critiquing it! I mean I just can’t enjoy vacuous entertainment anymore. Everything has to be broken apart and I have to analyze it. Gender and race and ableism, all of these things, I can’t even get away from any of it! [Bethany laughs)

ANTHONY: Well, like my poor wife! She complains “Well, can’t you just watch these things?” It’s like “No!” Everything for me is through that disability filter., through abelism, and it’s both the subtle and the extreme. One of the things that I wanted to make the connection with about this, talking about people being unhappy with transabled people, people with disabilities being unhappy with transabled people. It reminds me of the gay marriage arguments. I identify as being heterosexual, I’m a guy, I’m married to a woman, and I don’t feel that my marriage is in any way diminished if gays and lesbians marry. And it feels to me like that’s the same argument around somebody being transabled.

BETHANY: Interesting comparison. I think politically they’re different. There’re different issues at stake.

ANTHONY: Oh yeah.

BETHANY: And the clear and then lesbian, gay, bisexual, and transgender movements, I mean there’s division around that issue within our own communities, multiple communities of queerness and gayness. I don’t know exactly how to parallel those two.

ANTHONY: I wouldn’t parallel the two struggles, it’s mostly just that one argument where-

BETHANY: Right

ANTHONY: - fundamentalists say, you know. this ruins marriage if we let gays marry, and it’s like, I mean for me, how does that affect my marriage? I don’t get it.

BETHANY: Well, I mean, just to speak, yeah, I mean,  exactly. How does that inauthenticate my disability, how does that break down you marriage? I mean, the system of marriage is breaking down all over the place, it doesn’t matter if you’re gay or straight -

ANTHONY: (Laughs) Right.

BETHANY: - I mean you’re either going to fail or you’re not. The statistics are not for you. I also, to compare it, to draw that parallel that you’re pulling out, which I think is quite astute, you know, I don’t think that transability has anything to do with inauthenticating my disability, but I will say that when I was just collecting data from, just stories, experiences, thoughts, feelings, from my colleagues within the disability community, I did come across a person who’s an amputee, and he’s been fighting the system for social security and they’ve been saying he’s transabled, and that he elected that amputation, and so he has a lot of hostility because of the issues he’s felt, that people have tried to block benefits and services for him because they assume that he was not “authentic”.

So I see that there are certain spaces where those feelings are really organic and real, but I don’t feel inauthenticated by transabled people at all. And I don’t think any of us should, and I think the whole gay marriage argument is absolutely absurd. So, just to add that on.

I mean, my parents are multiple marriers so I don’t really, I mean, what are gay people going to do that’s going to destroy the sanctity of marriage? Gimme a break. It’s not a slippery slope for me marrying my dog.

ANTHONY: Right. Before we get off this topic about authenticity it seems to me that to argue that this isn’t authentic disability somehow is a reductive definition. You know, that it starts almost getting to that kind of categorization that we find in the  medical establishment. My experience of disability is so much broader than any kind of specific issue, if that makes sense.

BETHANY: Yeah, no, I hear you. I don’t know. Expand that, so that I can respond.

ANTHONY: I think that I’m just trying to say that if we took off that “Well, Sean doesn’t have to worry about buying catheters, no Sean doesn’t have to worry about taking his wet laundry out of the washing machine - that’s one of the tough ones for me to reach the underwear at the very bottom of the tub - that he doesn’t have to worry about standing at the stove and seeing what’s in the pot”, you know to reduce it to that, to reduce disability to those specific issues is reductive.

And I try to be very careful about reducing anything to a simplistic perspective. You were talking about wanting things to be black and white like a 12-year-old and increasingly not being able to, I see reductive definitions falling into that camp, and I try and not do that.

BETHANY: And I hear you. And I think, you know it’s really interesting because I’m teaching in a university setting and one of the biggest lessons that my students have the hardest time with is that disability is more than just a wheelchair and people with intellectual disabilities.

So really this idea of transability, of expanding what we think of as disability politically, socially, medically, I think it’s an incredible tool because we are, I don’t know of we as a movement are doing well enough to do cross culture or cross disability work. And I think we do still work in silos all too often.

So, you know, I think that this opens up a space, and I think it particularly opens up that space for those people who are intermittently dealing with disability as I mentioned, because even at SDS, the Society for Disability Studies, I’ve heard people saying things like “You weren’t using a wheelchair a few weeks ago, what are you doing now, it’s like you’re transabled!” I mean, I just think those are micro-aggressions against each other.

ANTHONY: Right (chuckling)

BETHANY: We’re fighting each other about who’s the most disabled, and it’s not a fricking hierarchy, we have to get out of this modality of thought and just say you know, if you want to identify, awesome, because we need an army, because there’s a lot to fight against that’s actually substantive and real and harmful and we don’t need to be fighting each other to see who’s the most disabled. I’m sorry, it’s stupid.

And frankly the fact that we have to do that to get benefits like social security, we have to perform disability in that way, those are harmful systems and we’re replicating that within our own community by doing this. So I think you make a really great point about this sort of reductive nature of disability, and I’ll tell you that even with a whole semester of me ranting at my young little students, they’re still wrapped around this idea that disability is only wheelchair and intellectual disability, and I think they even give that just to Down Syndrome and maybe are now doing autism, but they really don’t have an expansive idea of what disability is.

I had Margaret Price come in to speak to my class, a professor at Spelman College, wonderful disability studies scholar, recent author of Mad At School, coming to speak about mental disability, she has a mental health disability and some other issues. And my students don’t know what the hell to think of it! They just have no idea that mental disability was even considered a disability. So, by the end of the class there were a few people who have mental disabilities, mental health disabilities, that actually started identifying as disabled, which was a magical thing to happen.

But it’s just a shame that we’re stuck in these really small spaces of a wheelchair being the iconic representation of disability, and Down Syndrome, those two things, that’s all we have.

ANTHONY: Right.

BETHANY: It’s just silly. There’s a big army there. If we can unite we can take over the world. And I keep saying that over and over again, like a ranting revolutionary.

ANTHONY: Well, I consider the start of the disability rights movement as being that, the curb ramps in Berkeley, and that’s when the blind and people who used wheelchairs came together. It’s like the first cross disability political action group, to convince the city of Berkeley to put in curb ramps. Because it’s cross disability that has made the current disability rights  movement so incredibly powerful.

BETHANY: Yeah. You know what, I think we need to keep building on that. I’ve seen that first curb cut and I’ve taken pictures of it with my shadow of my wheelchair by that curb cut and I love Berkeley, it’s in my heart.

But you know, I really still think that even though it started there, and even though some of us are doing a good job, we’re not reaching across. Physical disability isn’t reaching across to intellectual disability and mental health is coming in slowly, chronic fatigue, chronic illness, these things are slowly merging together. And there are a lot of great people that are really furthering these ideas, working on disability just as the truly centering all those voices that have historically been shut to the side.

But I just think we have a lot more to do.

ANTHONY: I’m reminded of, you know, on the other side of that cross disability coin in Berkeley, I used to use braces and crutches for mobility, and Ed Roberts wouldn’t pay me any attention or talk to me, but once I started using a wheelchair we were pals.

BETHANY: Ooh my. I can’t talk disparagingly of Ed Roberts, I don’t know if I’m allowed to, so I’m just going to leave that one alone. I don’t know about that.

ANTHONY: I don’t think it’s disparaging in the sense that you and I know very well that internalized abelism is something that we all have, we all operate under, and that to me is one of the things that I most need to deal with, because when you talk about some of these other disabilities as being under the tent, there’s a part of me, I mean I grew up in this culture, I’m 64 years old. I grew up in this culture having the same prejudices as the general culture, and I have to be aware of that and not, you know, treat my brothers and sisters in ways that are harmful.

And, Ed changed the world. Ed Roberts changed the world. And if along the way he was human, I think that makes it an even more powerful story.

BETHANY: That’s lovely. And I also think it’s important to recognize that, and this is probably disparaging to say but I’m going to say it anyway, but I’m sure there were plenty of women, people of color, that were working right along with them that don’t have things named after him.

And I wish that we had more of those stories and LeRoy Moore is one of the people that I really think is pulling more of those stories to the forefront of our movement so that we know that there are other people, because I know that it’s not all white, heterosexual men, although I don’t actually know if he was a heterosexual, but I know that they’re not our only leaders, so that’s one thing I would say, just to be a grumpy little yamp.

ANTHONY: No, no, I think it’s essential to talk about the racism that was a part of this, and just like ableism. The racism was a part of the movement. Sexism was, certainly. Homophobia I know was. You know, I know people that were closeted because of the homophobia in the disability community. I believe, right in the beginning, and I’m one of them, it was a white, middle-class male revolution. And very quickly women, people of color, GLBT, were very much a part of it, but there was something about that sense of privilege that we had that allowed us to say wait a second, just because I’m a crip doesn’t mean I can be denied those things that other white male heterosexuals get.

BETHANY: Sure. I mean, I think it’s going to be, you know, I think love, and many things are ongoing processes and divesting privilege and power within us, and really trying not to replicate racism, classism, sexism, all of these things, these are all ongoing processes that we need to be critically engaged in.

And I do remember Leroy telling me something about Ed Roberts working with people of color and how..., I know that there is something, but it hasn’t been written, it hasn’t been something that I’ve seen, and I would like to teach it. I’m just tired of teaching these, a lot of white people, so those stories, I’m waiting for Leroy’s book. And there are a couple of other scholars that are touching on these issues, but I think we need more of those stories. Because the movement wasn’t, and this is another thing my students get, I think, a little off on, not like sexually but they get off on the wrong track -

[Both chuckle}

- they think the movements are led by one individual. Like the disability rights movement started with Ed Roberts. It’s really a movement. That’s why it’s called a movement. There are multiple people and I just want to hear, so we can hear that sort of quilt of stories. I want to hear all of them, I want to know them, and I assume that’s what your podcast is doing, so I’m waiting for that, so I want to know more about those stories. It’s about the only disparaging thing I would say about the past that we’ve done.

We need to keep working on, and I think SDS is really trying to make strides at confronting racism and confronting these systems of power, so that we are creating a space of disability justice, but it is a process. We’re always making mistakes, It’s part of the growth process.

ANTHONY: Absolutely. And for people who don’t know, SDS is the Society for Disability Studies, where many of us come together in June.

I think the great man theory of history, thank God, doesn’t have nearly the kind of credibility that it once had, which pleases me. I can’t remember if we talked about the biography of Martin Luther King Parting the Watersand how it was not just about Martin Luther King, that was the true story, it was him, and it’s kind of like Ed Roberts.

I mean, once I heard about what was happening at Berkeley it gave me the words and the concepts to begin to do the work here at my local community and so you’re absolutely right, we need to start documenting this.

And I don’t know if people are aware that there are many, many stories that are told in the oral histories there in the Bancroft Library at UC Berkeley. They have an oral history project there, and there are days and days of recordings. And I don’t think anyone’s mined that in the way that they really need to be mined.

BETHANY: I agree with that. I’ve looked through it but I definitely have not mined it properly so I definitely, it’s a good point for all of us who are teaching and disseminating information , to relook at that. There’s a lot there. Absolutely.

ANTHONY: And I’m sure that we can tease out some of these issues we’ve been talking about, such as racism and sexism, because, I mean, to look at the arc of my own story, and you know, sexism is the one that’s most clearest to me. You know, how sexist I was in 1971, 72. You know, and where I got to, and all the work that I still need to do. You know, so I think that in those interviews there are people that are much more self aware than when they were doing the work. I hope, anyway.

Part of this podcast is to give a sense of how people like yourself were doing really cutting edge, really important work, got to where you are, because I think that oftentimes it’s easy for young people to think that someone who’s written a book is somebody from another planet entirely. You know, it has nothing to do with who they are as a disabled person. It’s kind of a jumping off point and the thing that kind of struck me when you and I were talking earlier was you talk about growing up with a disability in the military. You want to talk about that a little bit?

BETHANY: Well, I mean I was born on a military base. I was a sort of military brat tangentially. My father was in the military, my mother was in the military. My mother and father divorced when I was very young and she got out of the military when I was relatively young, but we moved around enough to be in the military lifestyle. And I always used military hospitals, healthcare etc.

Growing up, moving around, as a sort of nomadic spirit? It’s really interesting because, I think, this is just a conjecture, but I think for many people with disabilities when we’re in those spaces where we stay in one space for a long time, particularly we grow up there, we’re often sort of like a mascot, and I think, the only reason I’m asserting this, and this may be completely off-base, the only reason I’m asserting this is it’s so often that we see stories about, you know, individuals with disabilities becoming homecoming queens, and I just think that that is a vestige of them saying they’re being some sort of mascot. And that’s totally just tangent.

For me moving around? It’s taught me a lot about just adjusting, trying to figure out new ways to get talking to different kinds of people. It also taught me a lot about where I never ever, ever want to live. Or the values I never, ever want to have.

And that specifically, a lot of that centered around living in South Carolina, where I was immediately mocked for not having an accent, I was immediately mocked for not saying “Hey” instead of “Hello”, just really ridiculous things.

The lunchroom was segregated; I’d never seen that before, and I know it’s really silly to even say that, to admit that. I just didn’t get it. I didn’t understand why it was so divided, why everybody was so conservative, why everybody had - this was when my sexuality was burgeoning, and I didn’t understand why we all had to fit in these small boxes when we were teenagers! I mean, that’s when we should be able to explode! It was just so. so... Moving around was really interesting!

And I’ll tell you a little reason. California to South Carolina was an incredible culture shock, it was an incredible catalyst for self hatred because I was a huge outsider. I was not only, you know, not speaking the right language, but I was also a big old disabled person who wasn’t really happy with my body. And so it was a rough time. But moving around, I think, in general, has given me the freedom to love traveling and be able to go to different places and talk to people, and not be afraid of traveling alone.

I mean that’s one of the biggest things, that was one of the biggest things for me about learning disability pride. Just traveling for the first time alone. That was one of my biggest experiences in terms of bolstering my identity, bolstering my disability experience, and that was when I went to Norway, and I traveled by myself. That was better than a Disability Pride parade, not to disparage that because I do love a big party, but moving around was an incredible experience.

I don’t know if that really answers your question, but...

ANTHONY: Well, I was thinking about going to the next SDS in Denver and I used to spend a lot of time in Utah, and I was thinking about going there on my own, and my first thought was ‘oh no, I can’t do that’, so I’m really impressed that you have this spirit and I absolutely understand how much pride you can have by traveling alone in a foreign country. I think that, you know, makes absolute sense to me.

BETHANY: Yeah. I mean, I did meet with other people there. I went there representing youth in the United States. Really scary

[Both laugh]

BETHANY: I mean, you know, I’m really lovely on paper but I’m a really Rocker spirit, so it’s kind of interesting to represent a community. And it was three white girls representing our community, bit problem I would say, but... So I did travel alone like just doing the whole traveling thing by myself, but I did end up with other people there. So it wasn’t as if I was dealing with inaccessibility without somebody around. But it still was like, you know, 18 hours of travel by myself, trying to figure out how do I negotiate all this stuff, because I was young and I didn’t... I’m still learning how to say ‘You know, I need help. Can you pick that up?’ I’m still learning how to do that and again I think that’s one of those ongoing processes, like love, where you just have to keep working at it and keep committing to the fact that you, you know, you need to do these things. I need to ask for help. I need to tell my boss when I have chronic pain. I need to tell him that I need to go work on my couch because I can’t sit at my desk anymore, and that was one of the hardest things that I’ve done in a long time. And that’s really sad. I was 30 years old when I did that. That was last year! And it was really hard! It shouldn’t be that hard!

ANTHONY: Well, it’s part of the human condition, I believe, that having a disability, I mean that’s one of the things we get to teach people is asking for help. You know, when you do it, how you do it with dignity, and how you do it to allow the person who helps you to have dignity as well. I think that this, you know, I was about to say, let me tell you, at 64 I’m still learning. You said that it’s an ongoing process. You’re absolutely right. I mean, the culture is changing but we’re having to learn this stuff ourselves little by little.

BETHANY: You know, it’s my hope that, you know, I’m trying to blog more, I try to write more, I do a lot of speaking, and obviously this podcast is a way to disseminate stories so that we don’t feel alone. You know, I just wrote a blog post about what I would tell myself as a teenager about sexuality, and some of that was scary to post online because it was really a lot about myself, but you know, if I had access to that as a teenager maybe it would have helped. I mean, I think that teenagers with disabilities now are living in a great space because we do have all the social media. And I know that there are a lot of people who are against social media and that we’re becoming somehow less able to communicate in person, which is all crap, we’re just speaking in multiple modalities.

But what’s really great for disabled youth is that we can connect online, or they can connect online, and hear these stories from elders, saying that, you know, things will change. You can make it through this. Adolescence is not going to kill you and you will get laid! [Anthony laughs] If you want it.

ANTHONY: I found growing up and being mainstreamed being an incredibly lonely experience and to have had something like Facebook and blogs and those kinds of things to talk about disability would have made my life so much better.

What is the URL for your blog?

BETHANY: My blog is cripconfessions.com, and I started this blog, I think about a year or two ago. I was really dedicated to the name because I really wanted to start talking about things that I don’t think we’re talking about enough in the community, like internalized ableism when we’re dealing with dating; what it feels like when your disability becomes more significant; how you negotiate these changes in life.

I really wanted it to be a space where I could talk about things that I’m just not hearing enough people confess about, and I really want to give that to people, even if it is hard for me.

ANTHONY: Well, I thought your last blogpost was, I liked how straightforward it was and in many ways it was, for me anyway, it was nothing new and it’s stuff I’ve read to the, stuff that is said to the able-bodied community very often. But coming from you, from your perspective, gives it so much power, particularly for young people, that to me is what makes it really, really impressive.

BETHANY: Yeah, I mean sure, all those lessons, I mean, that’s one of the great things I love about being a sexologist is that really ultimately that we all have these worries that whatever our desire, our inclination, our predilections, whatever we want, whatever we fantasize about, whatever, when we feel awkward, all of these things, those are things that everybody asks me about, and they want to know if they’re normal, is it okay.

A lot of these things, a lot of this feeling of not being desirable as a teenager, most of us went through that crap. We just won’t admit it. I think that there are plenty of people, I’ll tell you the majority of people I went to law school with, for example, lied their faces off. They told, we were talking about making straight A’s, many of them dropped out. I mean, many of them were performing straightness, I just think that it’s a really interesting world that we’re trying to perform things that we’re not, and we can’t actually say that underneath this facade there’re some cracks.

I just think that we need to open up that space to have those conversations because they are universal, sort of. I don’t think there are really any universals in sex except for this idea that people are wanting to know whatever it is they’re interested in or do whatever, is normal. That’s the one thing I get, and it doesn’t matter what the disability or ability is. It doesn’t matter what the age is either. People just want to know that they’re okay.

ANTHONY: Absolutely.

BETHANY: If it’s consensual and you’re having fun, go for it! And be safe. Safer. So.

ANTHONY: And I think that is the lesson that needs to be told to people with disabilities and I think it needs to come from us. I mean, when I hear sex advice and it’s not coming from someone who’s lived my experience, that’s one of the few times that I’m like, “Do you really know what you’re talking about?”

BETHANY: [Chuckles] Yeah. No, I hear you. I do understand that, I do, I can resonate, maybe information resonates more with me when it’s coming from a crip voice, in some situations.

But you know, some of those things like when he’s just not that into you, when she’s not that into you those things are across ability levels. But for me, telling about my experience with internalized ableism wrapping into the story of being a teenager, I think that that is what gives it a unique thrust, and something that speaks to, I think, our community, a voice that needs to be out there.

And that’s really where I center a lot of my work around sexuality. It’s just looking at those social aspects of sexuality and how the stigma of disability impacts our sexuality, how we’re deemed undesirable and how we need to break that apart. That’s where I spend a lot of my time. I’m not super interested in the mechanics because I really think that’s some of the easier stuff to figure out. You just practice and play and figure it out.

But with regard to unpacking internalized ableism, and being able to look at your naked body in a mirror and not hate what you see, because that’s what culture teaches us to believe, I think that requires a lot more work and a lot more conversation.

So that’s where my investment is, is really just breaking down those ideas. I’m really, I’m really sad with myself that I didn’t have some kind of time-machine and I could just go talk to my teenage self and just like get me through this. Or just blast through the teenage years and avoid them altogether.

ANTHONY: You wouldn’t be who you are today if that teenage self hadn’t talked to you. And I would like to relieve the pain that so many teenagers have, but I also for myself have to say this is my experience and this is what brought me to this point, which I’m really pleased with this point in my life that I’m at.

It’s one of those things where things need to be better in general, but also for myself my journey’s been what my journey is, and that’s the 12-step programs talk about accepting your past, not wanting to shut the door on it, but also not dwelling on it. And I think that that’s one of the things that I’ve tried to take to heart.

BETHANY: Yeah. You know, while you were saying that I completely, I was shaking my head the whole time, and that’s actually what I articulated in the blog. It’s just, there was a lot of time that I wasted, I think, and I could have avoided some of it, but I absolutely agree and I think that having suicidal ideation as a teenager because I wasn’t feeling desirable, because I lost somebody to suicide because he had a spinal cord injury and he wasn’t having erections, I mean those things, if they didn’t happen to me I wouldn’t be a sexologist. I wouldn’t be continuing the work of people like Barbara Waxman and Linda Mona and Dr Mitchell Tepper, you know, like really, I wouldn’t be this person, I would probably have been what I wanted to be as a kid before I knew about ableism, and that was a greedy, evil…

[Anthony laughs]

So in that way I am thankful and grateful for these experiences, but, you know, it’s an incredible loss that we lost somebody like Karl, and I’m just lucky that my attempt didn’t work, so, you know, it’s frustrating, I feel a dichotomy here where I want to erase the pain but I also can’t let it go. I mean, it’s kind of like Eli Claire’s work where he talks about how oppression and all of these memories in our experience and trauma, it exists in our marrow, it lives with us forever. And I don’t want to erase that but sometimes I’d just like to go back and jut hug young Bethany and say ‘It’s going to be okay.’

But now my center, the Center for Leadership and Disability, we’re starting a youth advocacy program and hopefully we can disseminate some of these messages, and all of these different tools that we’re using to disseminate messages, I’m really hoping that that does actually promote some more self efficacy at a younger age for people with disabilities because we certainly need it. We don’t have enough role models. There’s a dearth in our community and we need to fill it.

ANTHONY: That’s the double-edged sword that we, at least that I live with, and that I love the fact that there is so much work to be done around oppression and disability. But I also despair at times at the amount of work that needs to be done around oppression and disability.

BETHANY: You know, I think that despair and anger are fuel. Shame can be fuel to your revolution. Obviously if I have all this hostility in me some of that is really just like an engine that’s pushing me forward.

I clearly come across as a Libra and I will admit that. I do have a lot of dichotomy where you know I want to erase some of it but I also know that it keeps me going. It keeps me angry, when people still, you know, do all these regular micro-aggressions that many of us with physical disabilities or any kind of physical difference get stared at and intrusive questions, all of those things that make me just completely rant all over Facebook and everywhere else, and all over to my friends and they’ve heard all these stories before. You know. That keeps me going. That keeps me invested because I know there’s still a problem and, I don’t know.

And then we get that moment, that beautiful moment in June, when we all come together and we dance at the Society for Disability Studies, and for a moment things change. And we can escape into a little cloud of wobbling, drooling, fantastic, really dancing. It’s sexy, it’s hot, it is so much fun. And I am so, so grateful to have found my community.

I was mainstreamed also, so I was the only disabled kid for a long time, and finding disabled friends was one of the best things I’ve ever done for myself, and it’s something I would recommend to any young disabled person. And you know, so many of us have to deal with internalized oppression just to get to the point of even wanting to talk to disabled people. Some of my best friends who are disabled when we talk about this, we were afraid of disabled people as kids. [chuckles]

ANTHONY: Absolutely. No, I recognize that. Yes.

BETHANY: You know, it’s just there are so many interesting issues that we could just digest for hours together.

ANTHONY: Well, with that, I think that’s a wonderful ending. This has been a wonderful conversation that I think of like a good party. At the end you should be wanting more rather than boy, I’m glad that’s over with [Bethany chuckles] and I would love to carry this conversation on for hours and hours.

And I think that that is what we get to do with our colleagues over time and I’m looking forward to being able to continue that conversation.

So, Bethany, thank you very much. This has been a wonderful, wonderful time.

BETHANY: Yeah. Thank you so much. And please keep looking at cripconfessions.com and look for more work on transability. I’ve got several pieces in mind that are coming out and I would love anybody who wants to talk to me about transability, please e-mail me, find me on Facebook, find me on Twitter, I’m Disabethany on Twitter. My e-mail is bstevens@gsu.edu, Georgia State University.

I’m really open for conversation, and that’s obviously clear because I can’t shut up, but I’m really open to the subject and I want to hear more from my community about transability and sexuality and how I can speak to all the different issues that we’re feeling around these topics.

Anyway, I thank you so much for allowing me to be your second podcast on iTunes. I can’t wait to download myself.

ANTHONY: [Laughing] Absolutely. Well, thank you Bethany.

This next month, in January, we’ll have a podcast with Maysoon Zayid from the Institute for Abilities to Understanding. She’s a Palestinian, comedienne, and frequently appears on the Keith Oberman Show.

Thank you.

This has been Anthony Tusler, AboutDisability.

If you have questions, or suggestions for guests to this program, please contact me at podcast@aboutdisability.com. This webinar, and others in this series, are archived at http://atcoalition.org/training-archives.

And I want to thank Karen Sheehan and John Mires at the Center for Accessible Technology, for all their help in making these podcasts possible.

Thank you very much.

 

 

Transcriptions made possible by Leslie Harris: lesrhar@gmail.com

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