Last week I had the pleasure of talking with Patty Berne, director and co-founder of Sins Invalid, a Bay Area-based organization and performance project that centralizes artists from historically marginalized communities. If you are remotely interested in (A) disability justice, (B) sexy and smart performance art, (C) spaces centered around people of color and queer, trans*, and gender non-conforming folks with disabilities, or (D) humanity–you need to know about Sins Invalid. They are in the process of releasing a new documentary about their work, called Sins Invalid: An Unshamed Claim to Beauty in the Face of Invisibility, which will become available for purchase and screenings in the coming months.
Since geography prevents me from attending the documentary’s first screening in Oakland this Wednesday, I contacted Patty to hear more about the process of making the film. Our conversation was all heart, covering everything from the challenges of translating live performance to film, Patty’s own experience with body- and disability-related shame as a child, and liberating beauty from the ties that prevent us from seeing it in ourselves and each other.
As a queer writer and performer with a genetic condition that affects my body’s connective tissue, making my joints very flexible (read: a human pretzel) but also very painful and prone to injury, I have more than a passing interest in Sins’ work. My disability is largely invisible until I choose to share it with others, and this, combined with my young age, can make it difficult for people to understand that I have physical limitations, that I experience daily pain and fatigue, or that I’m not lazy or unmotivated when I need to take things slowly. So I appreciate that Sins Invalid complicates, rather than simplifies, identity.
One of the things that moves me deeply about Sins Invalid is the fact that Patty Berne and Leroy Moore, co-founders, both identify as visibly disabled–among other identites–and work to centralize and nurture artists (including themselves) who exist at the intersections between ability, race, queerness, sexuality, and gender. No one has to qualify as “disabled enough” to perform; as the director, Patty works with each artist based on their needs, abilities, and talents. That should be common sense, but it’s not how many people relate to disability.
It was fitting, but unintentional, that my first question for Patty was about how her vision for the project has evolved since filming began in 2007. As I’ve sifted back through my seven typed pages of transcription from our interview, I came up against a mini-version of the problem she herself identified: “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! 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.”
I, too, want to make sure that every gem is elucidated, so I’ve published an extended transcript of my conversation with Patty for those of you who want to read a linear, more detailed version of our interview. For a rearranged sampling of my favorite parts of the interview, read on.
A Conversation with Patty Berne
The following are excerpted and rearranged segments of a Skype conversation between writer D. Allen and Patty Berne, director and co-founder of Sins Invalid, which took place on Thursday, October 3, 2013. Unless otherwise specified, D.’s dialog is in bolded text, and all other words are Patty’s.
Translating from Performance to Film
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 [live performances] were 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 [the documentary] would look—I wish it 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 [of the film] kind of evolved over time.
Beauty and Shame: This is Reality
I’d like to ask you about the film’s tagline, An Unshamed Claim to Beauty in the face of Invisibility. I’m a writer and I love words, so I looked 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, uncovering sexuality, taking the veil away from disability and letting it shine. 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 [in Sins Invalid] 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 [when 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.
The Ways our Experiences Shape Us
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.
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?
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 [wheel]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 [co-founder] 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.
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. 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.
Identity / Politics
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. 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.
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.
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.
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 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.
. . . . .
You can also view this article on my website, or read the extended transcript of my conversation with Patty Berne over here. For more on Sins Invalid, visit their website, where you can look through photos and video from 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.