This is an extended edited transcript of a Skype conversation between D. Allen and Patty Berne, director and co-founder of Sins Invalid, which took place on Thursday, October 3, 2013. Some material has been lightly edited, but the flow of the interview remains intact. To read my essay based on this interview, please hop on over here.
D.: You’ve been collecting footage for the documentary since 2007. How has the project evolved since you began—where did you start, and where have you ended up?
Patty: [Laughs] Film is a behemoth medium, and I have a mad amount of respect for filmmakers. I think we partly did it because we didn’t realize the scope of the project when we started! What we were clear on was that the work was beautiful, and it was significant, and we could only share it with so many people in our local environment. That’s part of the beauty of performance, that it’s specific in space and time and locale, but also given the intersections that we try to represent and the way we try to represent them, we know that more people need to have access to the insights and visions and politics that we’re engaging in.
The vision for how that end product would look—I wish were more clear from the beginning. Some filmmakers start with a story board and then get those shots, but we didn’t start like that. We started with the actual reality of performance, and then the story kind of evolved over time.
Depending on who we’re collaborating with—it’s a very intimate relationship between a director, an editor, and a director of photography. [On working with editors]: Someone really has to get the political message and the aesthetic vision, both.
That’s a bit of a challenge when you’re talking about a political message that many people are new to: one in which people with disabilities are centered as the primary storytellers; one in which it’s critical that the representation include disabled people of color and queer and gender-nonconforming people with disabilities, that it reflect not just a bunch of people in wheelchairs because that will read visually easier for the audience. How do we make it so that someone will still understand disability if someone is sitting in, you know, a regular folding chair?
So there was definitely some political education that had to happen with the editors on all of our ends, and I was a first-time director so I didn’t know my ass from a hole in the ground [laughs], so the vision changed a lot. We’re all really proud and pleased about what we have; it’s now a 32 minute documentary.
Since we still have a hundred hours of footage, part of me wants to be like, “Let’s go back and do a feature length!” But let’s just launch this, and then we’ll see. I’m kind of a saver, a scrape-the-end-of-the-toothpaste kind of person, so I’m like there’s all this footage that I’m sure has all these gems, and I want to make sure that every gem is elucidated. But I don’t know if I’m the best fit for the film medium, since there’s a lot you’ve got to let go of.
The film includes interview footage with me and with a few other performers, and really features performance excerpts from various years, so the performance excerpts I love, I know the backstory behind every performance. I know what took so much effort. I know intimately what was behind everything that happened on stage.
Can you paint us a word picture of a particular moment or scene in the documentary?
I love ET Russian’s piece. They’re just slowly undressing, basically doing their “night routine,” while they’re remembering a sexual encounter with another crip. So there’s a voiceover of that memory while they’re getting dressed, and they’re doing a slight masturbatory thing with their legs, and it’s beautiful. I love that piece.
What people don’t know while they’re watching [this clip of] the film is that the broader piece is called “Crip Sex Moments.” ET Russian and Leah Lakshmi Piepzna-Samarasinha did a collaboration where there are a lot of really intense political pieces, and interspersed between those are these crip sex moments where they’re just doing sexy vignettes. And sexy vignettes in and of themselves have gravity too, because life has gravity. So they were more sexually explicit and fun and hot.
So people watching the film don’t see the whole thing that was happening on stage, or the blocking on stage, or the arc of the performance. With the film we have to build its own arc.
The performances are not a cabaret—they’re in an arc among themselves. So it opens with something, we build an emotional and aesthetic arc, then it peaks, then rolls forward and usually ends on a really sultry, grounded, embodied sexiness. That happens every year, it usually starts off by setting up the problem of pain and ableism, and then we move from there to inhabiting ourselves and our sexuality as an essential part of our healing, and actually growing from there to a very sexual and—even more than that—usually ends on a strong note of relationship and community and healing.
That’s the arc I create in the shows, but that’s not the arc the film has necessarily, because it’s a different medium. We’re not creating a performance, we’re creating a film. It’s a different beast. It’s a different reality.
How does it feel to have the film out there now?
Vulnerable! I think every artist feels like that with their work. It’s a really vulnerable feeling—hopefully people like it, hopefully it was worth the effort, it’s just scary. And it’s exciting.
The vulnerable child in me is like, “Oh my gosh, I hope people like my stick figure drawing!”
Part of me is really proud of the labor regardless of how anybody receives it at all, proud of the work the artists have done. I’m really hoping that they feel good about the film. There’s another part of me that’s practical, and the feedback we’ve gotten has been pretty much 100% positive, and so I have to ride on the faith that okay, it’s a good piece. Probably could have done better! [Laughs] It’s a little neurotic! Like all good creative work, it makes a person a little neurotic.
One of the things I admire about Sins is the inclusive language around disability—no one has to prove that they are “disabled enough” to be included…
Yeah, that’s kind of crack!
…and also this idea of centralizing marginalized folks. How does this mission get translated into the medium of performance and represented onstage?
Well, it’s a little bit complex because it’s certainly our politic. It’s our politic because I’m a person with a very visible disability—I’m a chair user—and ever since I was a child I was stigmatized as a person with a disability, and also as someone who is female presenting, as somebody that is mixed race, Japanese and Haitian. And Leroy Moore has a visible disability, and has a speech impairment, and he’s African American. So we understand naturally the intersections of disabilities.
And neither of us was embraced by the Disability Rights movement or world, because it’s a very white-centered world, and it’s very much a rights-based reformist movement, and we both identify as having radical to revolutionary politics. Many of the strategies of the Disability Rights movements [focus on litigation], which make sense since people don’t have access to education, transportation, employment. But in terms of who is considered within that framework, there are a lot of crips who are not documented because of immigration status or because of disability…. There are cliffhangers left by the Disability Rights movement. But in terms of who is considered within that framework, there are a lot of crips who are not documented because of immigration status or because of disability…. There are cliffhangers left by the Disability Rights movement.
And so we started the idea of disability justice back in 2005, in conversations really looking at what are the pros and cons of calling something second wave Disability Rights, or what are the pros and cons of just calling it Disability Justice. [We were] talking about centralizing disabled people of color, gender non-conforming people with disabilities, and including people with chronic illnesses or who identified as sick.
So there’s this framework of thinking about it, but there’s also this reality of people in our community. There are lots of people that I love who have disabilities, but you can’t tell—they’re not apparent. Understanding disability as something that’s created—vis a vis the social model of understanding—there are people certainly impacted by disabling factors that have nothing to with them, but have everything to do with living within capitalism and the expectations of a productive norm.
In our 2006 performance, one of our performers identified as intersex, and they understood themselves to be effectively disabled because of the ways they had been medicalized, pathologized, and marginalized—economically, politically—because of their identity. They didn’t have anything that the Social Security administration would consider as a disability. I respect that. I also don’t want to put any labels on anyone, if someone doesn’t identify as disabled.
There are a lot of people that are functionally disabled who don’t identify as disabled. In the same way, there a lot of people who are functionally same-sex loving who do not identify as gay. I might be like, “That looks gay to me!” Or if I didn’t have one leg and used two crutches, I would call myself disabled. But if someone doesn’t identify that way politically, whatever they want to call themselves descriptively is kind of their business. I might have a political opinion about who wants to come out as disabled or queer or whatever, but that’s just my personal opinion. Does that make sense?
Absolutely. What you’re talking about is really allowing people to hold their own power by choosing how they name themselves.
Yeah, and at the same time, what you were saying about how we represent it onstage—it gets really complex there. There’s a self-selection. For example, a really good friend of mine just did a film about people with really unique faces, beautiful faces. Most of the people would be considered to have a “cranio-facial disfigurement.” There aren’t a lot of people who have that reality who would want to [sign up for this]. It’s self-selecting.
There are a lot of people, for example, who are neuro-atypical who are not going to want to deal with the stress of a tech week. It’s stressful, there’s a lot of people, you have to perform on command, literally. That just won’t work for some people on the autism spectrum. That wouldn’t work for a lot of people, period. Performance is stressful work. And so there’s a self-selection, in addition to just personality type, around disability.
For myself, there’s a reason I don’t get onstage. [In Eli Clare’s book Exile and Pride] he talks about public shaming, and how many people with disabilities were paraded around as children and stripped, and that’s exactly what happened to me. Doctors would come to the school and publicly strip me, not public like on a corner, but for a little kid—I’m like this little brown girl in a wheelchair and they’re taking my clothes off, and twenty old white doctors are looking at me and trying to determine what’s wrong with me, and they’re doing it for their training—I don’t know what the fuck they’re doing it for, really—it just seems like non-consensual perversion to me. It’s not a scene I agreed to.
I then developed a lot of neuroses about being viewed. To this day I’m really uncomfortable onstage. I’ve worked on it a lot, I’ve been in the political world since 1984 so I’ve had a lot of opportunities to work on it. I no longer shake on a mike, but I’m pretty uncomfortable. There’s no reason for me to do that when there are people that love being onstage, and I can write some pieces to be performed onstage.
I think in that way, not all disabilities are equally represented in the performance work. For example, Peggy Munson participated one year as someone with environmental injury—actually Peggy’s language is MCS (Multiple Chemical Sensitivities)—and Peggy submitted a film, which is great. And we certainly work with people. For people that have any kind of cognitive fogging going on, we’ve done things where we can support people—we had one artist that had a traumatic brain injury, and memorizing the script was just not possible, so we incorporated in to their piece like they were reading their prompts, but they were laying them out as if they were reading Tarot cards.
We’ve incorporated soundscapes, voice overs, like I’ve done a soundscape for Sins before because I can pre-record something, but I wouldn’t be comfortable doing it [live]. So we work with where people are at, but even still, if somebody was seriously traumatized, or the nature of who they are just isn’t comfortable, they’re not going to contact us so that we can work with them. All we can do is say, “Send us your stuff and we’ll talk.” We haven’t done specific outreach to specific communities for multiple reasons. We usually do a general call for artists, but we don’t generally do a specific call for X community or Y community to represent.
The two things that are our political bottom line are that it’s majority queer, majority people of color.
I’m interested in the tagline, An Unshamed Claim to Beauty in the Face of Invisibility. I’m a writer and I love words, so I was interested in looking at the words beauty and shame. Turns out, shame is reputed to come from a root word meaning ‘to cover,’ and it seems like Sins is approaching and re-defining beauty by ‘uncovering’—uncovering the body, uncovering the truth about ableism, uncovering sexuality. The roots of the English word beauty are stuck in traditional femininity, heterosexism, reproductive viability. Do those meanings resonate for you? Can you talk about beauty and shame in relationship to your work?
In this culture, in this economy, we’re taught to understand beauty in a ridiculously limited way, in an absurdly limited way. And if someone wants to live happily, I think it’s in their interest to disrupt that and actually see beauty in all of its manifestations. It has many juicy manifestations, from rocks to plants to all nature of animal and all nature of people. To me, that’s reality. That is reality.
And if we go out in the Bay Area—if people want to see what people look like, or what a particular gender looks like, look around BART [the train]. That’s what, for example, women look like. Not this ridiculous slice of who you’re going to see on television. Women look like the people on BART, or the people at the Laundromat. That’s not limited. That’s not the only way that people look; you have to look in old age homes, you have to look in nurseries.
Part of [our work] is to liberate this idea of beauty from an ableist, heteronormative, patriarchal, racist—more of a white supremacist—vision that’s rooted in a profit-driven motive. Beauty is much more sacred than what it’s been reduced to. I believe plants are striving, plants glow, when you attend to them. And to me that’s very natural. Children glow when you’re like, “Oh my god, you’re amazing!” When you actually appreciate the beauty and the depth of something, there’s this whole energetic resonance—with the kids in our life, with our lovers, with our pets—that’s beauty.
One of the catch phrases we have is that beauty always, always recognizes itself. It does. If you think that the divine is the same thing as beauty is the same thing as love, it does, it strives for itself.
Regrettably, because of the ableism and the white supremacy and the not just heteronormative but policed patriarchal bounds that we have, shame of our bodies is something that people have developed from [since we were] little, little beings, and it’s so sad. I was just so ashamed of my body for so many years. It’s nice to let go of that. It’s really nice. It’s nice to recognize oneself, and to recognize others, and to allow others to recognize you. And yeah, that’s my hope for the project at the end of the day, that people recognize themselves and recognize others. So the tagline comes from that.
Leroy Moore and I talk about how we started the project because of our love for each other… . [We were sitting at this local arts café] and I remember just looking at Leroy and thinking, this is ridiculous, you are just so fucking hot. He and I both have had difficulties in intimate relationships, in either getting partners or staying with partners, and I believe because of ableism. Not only because of ableism—either externalized or internalized ableism—but even getting a date if you have a visible disability, it’s difficult, people don’t consider you. People are just like, Yeah, no. Why? That doesn’t make sense to me. Leroy’s hot, he’s super hot, and to me it’s ridiculous that people aren’t banging on your door, you’re so juicy, you’re the nicest person ever, you’re super hot. And the fact that he had a lot of trouble dating was really a trip and really painful.
We want a place where we are seen—[at that time] we both had films out about our sexualities and our disabilities, and at the time neither of us were dating or had been dating for a long time, because of many different intersections of oppression. I think I had been getting a little more action than Leroy, but basically neither of us had been involved for a decade or something.
And so we had these films out, and when we put our films out we were saying we were going to be the brown spot, in the POC night at the crip film festival, or at a multi-racial film festival we’ll be the crip spot. We need a place where we’re centered, you know! And seen.
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For more on Sins Invalid, visit their website, where you can view photos and video of the performances, or contact them to learn more about Sins Invalid: An Unshamed Claim to Beauty in the Face of Invisibility, including how to purchase copies or bring a screening to your town.