[Note from Laura Hershey:
I've been friends with Bethany Stevens
for several years. Recently she came to Denver to present at the National Women's Studies Association annual conference. She agreed to sit for an interview with me. Our discussion was wide-ranging and frank. Compared to my earlier blog entries, this one is quite a bit longer. I considered editing it down to a much shorter format, but the ideas and information it contains are complex, interconnected, and valuable, and editing would disrupt the flow. This blog entry features adult material; please read with that in mind.]
Hershey: So Bethany, I want to talk to you about your work in the area of sexual health and disability. I know you have a Masters degree…
Stevens: I have a Masters degree in Sexuality Studies from San Francisco State University
. It was largely theoretical-based, no real biology, and nothing very practical either. It was fun to theorize.
Hershey: Prior to that you had gone to law school. You passed the California bar. What made you interested in switching from the law to sexuality studies?
Stevens: One, I lost faith in the law, just by studying it. I was naïve going into law school. I thought I could change the world through the law, and I lost faith. I also hosted a conference on disability and sexuality at the University of Florida in 2005, and I really enjoyed talking about sex. It was a hot-podge of people, and a really great after-party. I learned from that that I much prefer reading and talking about sex, than the law.
Hershey: And now you are a faculty member at Georgia State University in Atlanta.
Stevens: That's correct. I teach a "Disparities in Sexual Health" course in the Masters in Public Health program. I'm looking at disparities created by power structures, like racism, genderism – which is an umbrella term for sexism, homophobia, transphobia – ableism, and classism.
Hershey: And you also teach classes on disability studies?
Stevens: Yes. Well, one of them is disability and health, so I'm not really allowed to teach disability studies. But I do.
Hershey: What do you think are some of the issues, barriers, challenges facing people with disabilities in reaching sexual expression and fulfillment?
Stevens: I think there are many things: paternalism, ableism… this really messes with our desire. Because we're internalizing ableism we don't see ourselves as desirable, don't think other people can find us desirable. Ableism also impacts other people, because they actually believe those narratives that we are asexual and not desirable. So it really is that power structure. We can also look at more basic structural things, like not having access to reproductive care, sexual health care; doctors not even asking us the questions, not taking a sexual history, really believing and assuming that we are asexual.
Hershey: What are some good ways for people with disabilities to advocate for their sexual rights?
Stevens: I would love more people to talk about it. I think dialogue is an incredible tool. I think we don't want to talk about it. Barbara Waxman's piece, "It's Time to Politicize Our Sexual Oppression
," from 1991, pretty much all of those issues are the same today. Except sodomy is now legal, thank goodness, since 2003. Yay sodomy! So I just think we should be talking to each other. We should be talking about sexual shame. I think it would open up a space where we could actually start working through some of these issues that are entangled in our bodies and our minds. You know, how oppression becomes embodied, and how we can take it apart together.
On a more practical level we should include in our actions, and whatever we are talking about in these activist arenas, really getting these conversations going. Also, calling doctors out when they don't ask us about sexual health. Were still stuck in our silence around sexuality – which is a broader social issue.
Hershey: Do you think it's harder for people with disabilities to talk about it, or is it hard for everybody?
Stevens: It's hard for everybody. But living at the nexus of disability in sexuality, which are both silenced culturally, and difficult to talk about, which is something that pushed on us by ableism, makes it hard to talk about. But all the more impetus to do so. I know there are people working on it, like Amber Smock and FRIDA
I know there are more meritorious issues to be fighting for. And I do understand that. We do need places to live, and jobs to have, and attendants, and to get out of institutions. Those are all really crucial issues. But I think at the heart of disability stigma and oppression, ableism, is just this belief that we are asexual, because it fully dehumanizes us. But you can see that I'm sex-focused, so [laughing] I locate the nexus of ableism in sex. That's my own baggage – or my gift.
Hershey: I know you also do some writing and presenting on disability and queerness. Do you want to talk about that?
Stevens: Well, I look at it from the point of view of the queer body as any body viewed as "the other." For example, today I presented with my friend Sonny Nordmarken
about coalitional politics between queer-bodied people, so anybody deemed "the other." He's a trans guy, I'm a person with a disability. So we talked about how those power structures, transphobia and ableism, express themselves very similarly, like with micro-aggressions, staring, hate crimes…
Hershey: Did you just say "micro-aggressions"? Could you just talk about that term?
Stevens: Yes. "Micro-aggressions" – my favorite new word. It started in education journals, looking at African-Americans in college settings, in how they are experiencing these daily commonplace indignities – statements like, "You speak so well"; or looks like, "You don't belong here," or, "What are you?" This framework has expanded, and now many scholars are looking at it in other ways, and I just made the link to disability because it made so much sense. And so we're seeing it in the commonalities of our narratives, trying to build coalitions to see those commonalities between our identities, and across identity lines, so we can see that micro-aggressions, the staring or intrusive questions about our bodies, there's a disproportionate amount of hate crimes in our communities, and just structural exclusion from all kinds of areas of life. So what we're trying to do is create a guide for people to build coalitions, and talk about how emotionally it's difficult, but how rich it is to see commonality like how we've hurt each other by me expressing transphobia, and him [Nordmarken] expressing ableism, and working through those things to get to a place where we can actually support each other. We've presented on this three times together.
We've just added the discourse of love, which I'm really interested in. Because I think it goes beyond pride. I hope we can actually figure out ways to love ourselves. I'm going to build on my love for my community, and the love rhetoric.
I spend a lot of time just talking about social determinants on sexual health for people with disabilities, just looking at how ableism impacts our sexual lives.
Hershey: Do you have some concrete examples of that?
Stevens: The definition of sexual health says you need a sense of well-being in all spheres of your life: emotional, physical… And "well-being" doesn't have to be "able." So just looking at how micro-aggressions make us feel shame, and make us feel less desirable, just these experiences of being excluded – not being welcome to parties, because they're not accessible; not being able to pee there. Houses that aren't visitable, so you can't #### there. All the ways that ableism expresses itself, that are not as concrete as mammogram machines not being accessible, or someone's not taking a sexual history. I think it so much broader than that. Back in San Francisco – of all the sex parties, none of them were accessible! None! Just thinking about that, and how when you're in a bar, nobody approaches you unless they're going to spew paternalism, or try to baby-talk and feel good about themselves! All of these things are ableism, and we internalize them. I believed that #### for too long. I bought into not feeling desirable for many years.
Hershey: What teaches us that?
Stevens: Every institution that shapes our culture: media, our parents, each other. We all learn these systems, and we all teach them to each other. We all learn what the perfect body looks like, and we all try to fit in to it, and most of us can't. "Normalcy" is a broader problem, that really hurts so many people. I think parents buy into ableism, and I think that's because disability is presented to them as a medical problem. There's a lot of hysteria around, trying to cure us, trying to fix us. And the media is huge. How often do you get to see hot disability sex? It is rare! I would like to make a documentary that's hot and intellectual, talk about some of these issues and also show some sex images.
Hershey: Do you have anything you want to say about sexual and romantic relationships between people with disabilities, and relationships between with and without disabilities?
Stevens: Yeah, I find it interesting. I've been doing some workshops with People First, which is an intellectually disabled-focused self-advocacy organization, and I knew before I started working with them that people would be asking me how to find an able-bodied partner, and I didn't really know how I would deal with that. So I called some people [at the University of Illinois at] Chicago, because they have a sexuality consortium focusing on people with intellectual disabilities. They didn't have the answer, because it didn't, much for them. But for me it came up over and over. I'm still trying to figure out how to explain, in a really accessible way, how that's internalized ableism, because if we can't find each other desirable, how can we expect other people to? Not that I think we need to be together always. My partner – she's able-bodied, but she's definitely got some impairments that she's dealing with. I think there's a lot of beauty being with a disabled person. I've had some really wonderful experiences, because there are a lot of conversations you don't have to have, Disability 101. There is a commonality that just really beautiful to tap into. But something about being in love with a nondisabled person has helped me see how I have internalized ableism. When she tells me I'm really beautiful, I can't believe her all the time. It's a really interesting dynamic, and I think a lot of that is just love opening up a door. And there's different perspectives, like when we go out in public, and she's assumed to be the attendant. And also people saying that she's brave or courageous for dating me. There are different micro-aggressions that are expressed that make it an interesting and challenging, but beautiful, experience. On our second date, we had someone come up to us and tell me that he found me attractive, and then he turned to her and asked if that was weird. But going back to disability-on-disability, there is so many people in the disability service industry who have pushed people with disabilities away from each other, because of the stigma that we shouldn't be together, because the stigma will spread. We're supposed to be valued, that Wolf Wolfsensberger social role valorization idea, that we're supposed to disperse, and be with people who are dominant culture people so we can actually be more socially valued. I think that's all ####. I think they're actually pushing people away from any sort of reconciliation with disability. If you can't find another person with a disability attractive, people really need to ask why that is.
Hershey: You told me yesterday that you have 96 undergraduates in your "Perspectives on Disability" class.
Hershey: I assume that most of them are nondisabled?
Stevens: That's correct.
Hershey: So, as a teacher, how are you trying to change how they think about disability, and how do you know when you have succeeded?
Stevens: Well, the undergraduates are a hard road to toe. They are all over the place in terms of age. I have people who are older than me, and people who are just starting college. And they are all different majors, because everybody at my school is required to take a "Perspectives" class in order to graduate. It's a two-credit class. A lot of them are there because of the requirement, and that's fine. A lot of the issue is just trying to get them to understand the social constructed nature of race and gender and disability, and how all these things intermingle. So this semester, I tried a new method, and I think it actually worked. I started out with media analysis using music videos, something that many of them are already consuming anyway, and just trying to break apart sexual, gender, and racialized narratives in those scripts, and then move into disability media, just clips of, like, Liz Carr
doing some comedy, a scene from DV8
where they're dancing, a Sins Invalid
piece. I push them to see those scripts, and I teach them media analysis. I think that has helped start the framework. But after a whole semester, a lot of them are still writing about how sad these handicapped people are. So basically I can't reach all of them! And that's okay. Something I learned last semester is how to let them fight with each other, instead of me fighting with them, because they don't listen to me as much as their peers. So for example when I [assigned] your article, I had a guy ask if the purpose of the class was to understand that disabled people are bitter, and that we're angry at able-bodied people. And I didn't answer it! I just asked other people to respond. And because we'd started out looking at race, gender, sexuality, and seeing those power structures as parallels, and building on something that they already know, I had a few African-American in the class who were just like, "Look, just because we talk about discrimination, doesn't mean we're bitter; it just means we're vocal, and it's important to say these things." So it was nice to have them counter each other. There are a lot of people who get it, and whisper to each other in class, and get angry when people say offensive things. I leave the class not exhausted anymore, because I don't fight. And how do I know when I'm reaching them? Just small things, like when they check each other, and call each other out on wrong language – like talking about how "retard" and "lame" are hate speech. Seeing those parallels between racism and ableism.
Hershey: A lot of the readers of this blog are from the spinal cord injury community. I'm just wondering, particularly for more recently injured and disabled people, what advice would you give about sexual health?
Stevens: My advice would be the same as to just about everybody else, and that is just to think outside the box. Stop thinking about sex as what you've seen on TV – that it has to be spontaneous, that you need to stand up and be pressed against a wall, that it has to be heterosexual, it has to be unsafe, that you don't need to be negotiating or communicating. I would just encourage people to talk to each other! A good tool to start analyzing the spaces of the body that can feel pleasure if you've lost sensate capacity in parts of your body, is to try a game with yourself, or with your partner, and just figure out your pleasure topography. Go over your body, and feel where you feel pleasure. Try different touches, pressures, different types of things – feathers, anything. It's a fun practice to learn with yourself. I definitely think masturbation, and touching and feeling your body, is a teaching tool. Doing it with a partner is also really teaching, because we have different body languages, we like different things, regardless of disability, ability, whatever identity group we're in. So really, just figure out what's going on, instead of fumbling around without communication or anything. Also, I think really useful, I just read this book, Urban Tantra: Sacred Sex for the Twenty-First Century
, by Barbara Carellas. It's disability- and trans-inclusive. It's about using breathing, and concentrating your energy to allow yourself to have pleasure. It's really accessible to read. Just slowing down, knowing that your breathing can enhance your sexual experience when you've lost sensation. I just met a guy with a spinal cord injury in Berkeley, the last time I was there, and he was quadriplegic, and he'd studied tantra before, and he was still doing tantra. He has really managed to re-focus his sexual energy to his thumb, and people could suck on his thumb, and he could have an orgasm. Really reshaping what the orgasm looks like, and feels like, is useful. But it's not innate. It's like learning how to speak to people in a public setting. I don't think these are natural gifts to many of us; we have to practice. But practicing sex is good, either by yourself or with others.
Hershey: Is there anything else you want to talk about?
Stevens: Well, the other reason I got into sex was that I lost Carl to suicide. He was someone that I met in Norway in 2004. I really loved him. The reason he committed suicide was that he had a spinal cord injury, and he had lost sensate capacity, hadn't been able to have a natural erection, and couldn't figure out how to feel like somebody who could give or receive pleasure. She confessed this to me before he killed himself. I just think that's such a waste. That's why those conversations are so crucial. Like even in Murderball – which is just heteromasculinity to the ceiling – but at least there was that whisper of sexual revolution, that conversation that you can still have, given quadriplegia after a spinal cord injury. Just having those conversations, so people don't have to die! It just shows that ableism, and disability stigma, and all those ideas about asexuality, are harmful psychologically, and can kill you! And so that's why we have to talk about them, because they're just going to stay cloaked in silence. And we're going to be afraid! I read a few blogs on the Christopher Reeve page, by people with spinal cord injuries, and how that's made them feel not desirable with their partner. I think a lot of it could be avoided by just having conversations about how to move through that discomfort with sexuality, into some space of cognitive revolution.
Hershey: Thank you very much. I appreciate it.
Stevens: Yeah, thank you!
© 2010 by Laura Hershey