In Celebration of Being Both Hot and Disabled An Interview with Sins Invalid's Patricia Berne

Sins Invalid performer Leah Lakshmi Piepzna-Samarasinha. 

Sins Invalid is a performance group like no other. Founded in 2006, Sins Invalid is a performance project that’s rooted in disability justice. They explore embodiment, identity, and empowerment in a fundamentally intersectional way that’s conceived and led and driven by people of color who have disabilities. So here’s the exciting news:  Sins Invalid has a brand new show. It’s called “Birthing, Dying, Becoming Crip Wisdom,” and it’s running October 14-16 at the ODC Theatre in San Francisco.

Writer s.e. smith interviewed Sins Invalid co-founder Patricia Berne about complicating representations of disability in our media, about moving away from a binary view of disabled or able-bodied into a way of seeing the diversity of the ways bodies work.

This interview is part of our podcast episode “Breaking the Binary.” You can listen to an edited version of the interview below or read the extended version below. 

s.e. smith: What is the incubation and working process like when you’re preparing a show?

PATTY BERNE: Everyone has an independent voice within the show. So every piece has an arc so to speak. Simultaneously, there’s one overarching arc within the show. So that’s why we’re able to put excerpts on YouTube or tour specific pieces. But it’s not a cabaret in that they’re not disjointed pieces; they’re all leading and weaving one arc within the show, which again, follows the art of birthing, dying, and becoming who we are. We all have iterations of this in our own lives, either when we came out—birthed ourselves, so to speak—as queers or as people with disabilities. I mean, I know for myself, I’ve been functionally disabled all of my life, but I really kind of came to a political identity around disability when I was in my 20s reading Essex Hemphill as a Black, gay poet and author. He talked about essentially multiple forms of oppression and resistance. And I was like, “Oh my god! That’s just like me!”

Something that I noticed kind of thematically emerging with this show is a lot of discussion of aging, and I feel like aging and disability, independently, are really scary topics for a lot of people, and together are like almost a third rail of life in that they’re both, in many ways, inevitable for so many of us. What has exploring that been like?

We’ve all grown since we started the Sins Invalid project. It’s very different. So I’m 49 right now—it’s very different to be 39 in general than to be 49. Our bodies really change when we hit 40, and particularly having a disability. We joke that crip years are like not quite dog years, not like every year is seven years, but it’s definitely not a one-to-one ratio! And so I think as people that are, in some way, embodied in a non-normative way, we’re used to talking about things that are scary or complex. That’s just kind of part of the parcel, I think, of having a non-normative body, be it because of disability or for someone that perhaps is gender non-conforming or perhaps within white supremacy has always been pushed to the margins in terms of our bodies, not being centered. Even though we are the global majority, we’re taught in the US that our experiences as people of color are not common, that somehow we’re a minority. Anyway, so one being we’re used to talking about things that are difficult, and everyone has a different experience depending upon how close they are too their various coming-of-age processes.

One thing that I’ve always really admired about Sins Invalid is the very explicitly intersectional from the front nature of the project and the people who are involved. What kind of response do you get from that, especially in the disability community? Which is, speaking as a white, disabled person, really heavily white dominated.

I think sometimes people are…I don’t wanna say shocked. The first word that came to mind is aghast [laughs] because a lot of times, people in disability community–in my experience–are just loathe to talk about any other system of oppression, be it gender-based oppression or heteronormativity, white supremacy, I mean any nature of things. I think people are more inclined to talk about class, but really, historically, the disability rights movement has been very single-issue focused. That’s one of the offerings of disability justice framework has an understanding of multiple and interacting sources of oppression and institutional power and multiple means of drawing our strength and our histories, our narratives, our power. I think we, as disabled people of color, as queer folks with disabilities, of course we’re gonna talk about the wholeness of our experiences, which includes not just disability but what it’s like to be a queer, brown crip. Yeah. And I think again, aghast might be a little bit of an exaggeration, but I think if people are expecting a disability performance, I think they’re gonna be surprised because it’s not. That’s not the totality of who any of us are, and it’s certainly not the totality of my identity of any of the performers’ identities. So people are gonna, I mean, if anybody has a body, I’m hoping they’ll be enriched by the show cuz it’s not just about disability, it’s not just about race, it’s not just about queerness or gender. It’s about all of it and more.

You make an interesting point when you talk about the expectations of the viewer or the listener in terms of coming to a performance and expecting a disability variety show and not getting that. One of the things that I’ve noticed at the performances that I’ve attended is that you do an excellent job of breaking down the notion of disability as monolith, that even within disability, embodiment is hugely diverse. When you’re adding these intersectional identities, it gets much more layered.

Thank you. That’s the core of our hope. It’s kind of ridiculous, like when people refer to “Asian languages” you know [laughs]? Or whatever, just the ridiculous kind of flattening of experiences, of millions and even billions of people. When we’re talking about people with disabilities, we’re talking about people that experience their body in some way non-normatively or their minds or their emotional processes. Of course there’s gonna be variance. How could their not be variance? And just at a certain point it’s considered a disabling variance in this culture when things like, we can really see when it comes to things like vision, where at a certain point someone is considered visually impaired or blind. We both deconstruct the idea of disability—hopefully—as some finite category, and then also reflect on those who identify as disabled, not because of a medical label but because of a political identity of disability. And that’s many, many, many people with very different ways of being in the world.

So coming from the Bay Area, which is a huge disability rights and disability justice community, how do you experience disability community outside of the Bay when you’re traveling or doing interviews, whether you’re touring with a show or going on your own? Cuz I’m always really jarred when I leave the Bay [chuckles].

Yeah. We live in able-bodied normativity. So for me, disability communities often feel like home. It’s the able-bodied normativity and the policing of disability and the policing of bodies that’s really jarring to me in different states, in different countries. We released our film, “Sins Invalid,” in Japan first at the Kansai Queer Film Festival in Osaka, Japan. The Kansai Queer Film Festival was great. I so appreciated the labor that people put into hosting us, everyone from volunteers to the festival, coordinator. I mean it was just a lovely experience. I couldn’t have asked for a better experience premiering the film. And I’m Japanese. I’m half-Japanese. Well, I shouldn’t say that. I’m not broken up, but I’m Japanese. I’m also Haitian. My father came from Haiti. My mother came from Japan. So I felt so overjoyed to share this work with Japanese communities in Japan. So it was a lot queer folks turned out. A lot of disabled folks turned out. I was just blown away. One person, the person started our Q and A:  They said, “Thank you so much for showing this film. I’ve always hated my body, and this makes me love my body.” And I was just floored. Anyway, my point is that able-bodied normativity can get so enforced in many different countries, in many different sub-cultures and communities. I mean, I went to Texas a couple years ago, and people were literally walking backward to stare at me. It’s like they’d never seen someone in a wheelchair before. I was like, “Hello. I know I’m beautiful, but wow. That’s just off the tracks.” Yeah, able-bodied normativity and the enforcement of that, the expectation of it, that’s what always catches me off guard.

You bring up an interesting point here with the distinction between disability as a personal identity and disability as a political one. I feel like there’s kind of a slowly growing social awareness that disability is not just a medical problem but actually an identity and a social embodiment, as it were. Do you see that change as well?

Yes, and it’s really exciting because I feel like we’ve done a lot of work, people with disabilities, over the decades to shift that. And it makes me really proud of the work of the disability rights movement and moreover, really proud of the work that we’ve done setting forth and pushing a disability justice framework. I think that there used to be such shame identifying as disabled that no one would want to claim it. And I’m not saying that’s still not true. In the majority of, at least what I can speak to most I feel like most clearly, is in the United States, but at the same time, it’s absolutely shifting. Maybe not everywhere, but it’s shifting where people are able to identify as both hot and disabled [chuckles]. And we never heard that before Sins Invalid, to be honest. I’m not saying Sins Invalid was the reason or is the reason. I think it’s one of many, many, many reasons, but I do feel like we also made a good contribution to people being able to identify as disabled and whole, as disabled and queer, as disabled Black people, as disabled Brown people. I feel like these are new identities. Well, they’re not new experiences, obviously, but they are new political identifications that people are willing to publicly claim. And I wanna acknowledge Leroy Moore as someone that really started that around race and disability. Actually, he was one of the first people ever that said that they were a Black, disabled poet, for example. Or Eli Claire who talked decades ago about being a queer crip. 

So speaking of being hot and disabled, I promised we would talk about sexy goodness.

Yes.

So let’s talk about sexy goodness. This has been fore grounded in so many of your performances and so much of your work. Does it completely freak people out that you dare to put sex and disability in the same sentence?

Not crips, but yeah, able-bodied people are like, “Oh my god!” And then, I forget sometimes. I grew up in the Bay Area, and so just the idea of disability and sex freaks people out. But then also, sometimes we have SM content. Sometimes we have– Like, we’ll go there cuz that’s reality, you know? And people seriously are like, “What? What?” [laughs] The first year, we actually had people bringing children, not infants, but like 8, 9 year old people to the show. And I was shocked because it was explicitly said it’s a show about sexuality and disability. If it had been any other community, people would not have thought to bring a child. If it was about the sexuality of Black men or intersections of sexuality, trans identity, and anything, people would not have brought children because they would say like, “Oh no! That’s definitely gonna be racy.” But sexuality and disability, did they think there was gonna be like a rehab talk or something? And then there’s an artist onstage with a 10-inch strap on, doing a strip and super grimy, awesome performer, and people–I’m not exaggerating–ushering, running their children out. I was like, well, you know, that’s what you get. I didn’t say anything, but you know, I was like, “What did you think? We said explicit.” Anyway, so now we always make sure when we do any promotion that we not just say it’s a show on disability and sexuality, but that there’s explicit content. We do change the content a bit when we’re touring. We’re not gonna do things that are quite as…hmm…overlaid with assumptions because I do think that it’s really important for there to be conversation around some of the work that’s presented. Because I don’t want disability to be understood or queerness to be understood or—and it’s very easy for disability to be understood—as perverse. Because first of all, the idea that disability is not a normal part of human experience, that somehow it’s a deviance, deviation, is already kind of an idea that there’s some perversity. And then, you get filmmakers like David Lynch, who always kind of cuts that edge with disability and is always putting the perverted whatever, like heavy eye-shadowed older woman with a disability as the most sexually perverse and manipulative character in his films. Or something like he always has this thing going on. So we’ve been cast in many ways as perverse within cultural conversations, within broader cultural narratives. We had that actually in one of our shows that, where it’s not the virgin or the whore; it’s the divine or the profane, that somehow we’re perverted. So anyway, these are all things that are parts of the cultural conversation in which we’re producing our work, in which we’re living our lives. So I don’t want to tour pieces where there really has to be conversation unless we can provide that conversation.

But there’s so many ways you can bind someone to a wheelchair [laughs]. You bring up birthing as well with the show, which I think is really interesting and sort of keys into disabled sexuality a little bit because the only thing that seems to scare non-disabled people more than disabled sex is disabled people having children, whether that’s through physically giving birth or adopting or children choosing them as their family. Is that something that you explore a little bit in the show?

Yes, there will be some. There are parents in the performance. I invite people, when we’re working together I invite people to talk about—or I invited people—to talk about their experiences as parents, as disabled parents. Nobody has brought that to the forefront who’s a parent this year. People who may be parents have spoken about that for this year in their pieces. I don’t wanna disclose too much because I don’t want it to be a spoiler! You know, we do talk about eugenics every year because it is such a visceral truth for– I don’t wanna say truth. It’s a visceral experience for many people with disabilities, that we are either explicitly or through implication denied reproductive rights and are forced into sterilization. Threats of not receiving services or having our services cut, that somehow we are wrong for having been born ourselves. I used to direct a project on disability, race, and eugenics at the Center for Genetics and Society, and it’s just so painful. Because we don’t have healthcare in the United States, because we don’t have access to childcare in the United States, people who have children with disabilities will bring forth wrongful birth suits against either fertility clinics or physicians when they have children with disabilities in order to win funds for healthcare for their child. It’s a horrible framework:  the idea of a wrongful birth because someone has a body? I can’t even wrap my brain around that, you know? But it’s to that extent that we are villainized. It’s absurd, and it’s painful. So yeah, I hear you. I agree with you, and we certainly have things to say about both what it’s like to have been birthed as people with disabilities and to give birth as people with disabilities.

by s.e. smith
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s.e. smith is a writer, agitator, and commentator based in Northern California.

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