Soon after I moved to San Francisco eight years ago, I was introduced to radical crip artist/activists Leroy Moore and Patty Berne, and the project they founded, Sins Invalid. I had recently been approved for federal disability benefits, and though I have a lifelong disability and have been an activist since I was a teenager – and even though I’d spent the past fifteen years doing fat liberation work, and the past five years doing personal work around the legacy of medical trauma in my life – I had not figured out a way to integrate my politics within a bigger framework of disability activism.
Sitting in the audience the first time I got to see a Sins Invalid show, I witnessed some of the most radical work I’d ever seen or imagined. I watched Lateef McLeod, a beautiful black man with cerebral palsy, recite poetry through an electronic talker and get almost naked, crawling on the floor in front of a mirror under a giant full moon. I watched porn by Loree Erickson, a queer white femme wheelchair user, heard poetry by Latina wheelchair goddess Maria Palacios, and witnessed a performance by white genderqueer crip seeley quest, who did a lap dance while wearing a molded plastic back brace. Planted in my theater seat with my fake leg tucked under my chair, I felt a familiar but all-too-uncommon sensation: an urgency, a current in my body saying “This is the moment, step into it, this is where it’s happening.” I wanted in.
While hanging out in Patty’s living room six months later, she told me about Sins Invalid’s vision and the emerging framework of disability justice that guided her and Leroy’s process for putting the show together. She articulated something I had noticed but not known how to name, something that had felt missing for me in the disability organizing I had witnessed: It was single-issue focused. It was dominated by whiteness, straightness, and maleness. And it was concerned primarily with mobility impairments. Meanwhile, the radical spaces I had felt more drawn to – anti-capitalist, feminist, anarchist spaces, for example – had little awareness of disability, and often relied on high levels of physical and mental exertion without acknowledging limitations or access needs, inevitably leading to burnout and alienation.
Patty explained to me that the term disability justice was born out of conversations she was having in 2004 with other queer disabled women of color, trying to find language for a movement-building framework that centered disabled queers of color, that wasn’t “arguing for our mere right to exist, but instead assumed that we are whole beings.” (Patty Berne, personal conversation) There was some discussion of calling it a second wave of disability rights, which they thought might be less controversial. But it was actually seeing the reaction of white male disability rights organizers to the reframing from rights to justice (No, don’t do it!) that convinced them that disability justice was the way to go.
Let’s be clear: The disability rights movement has been crucial to the liberation of people with disabilities. As Patty told me the other day, “Fifty years ago we would all be in institutions.” Legal rights, attendant care, education, public housing, street access, the ADA, all of this came about through the focused work of disability rights activists, and we now rely upon these structures. So hurray! But in terms of speaking to the needs of people who have to straddle multiple experiences of marginalization and oppression, there have been some (as Patty calls them) “cliffhangers.”
“Disability rights doesn’t challenge any structural oppression except for disability. It invisibilizes many people’s lives,” Patty explained. “Even the idea of independent living is a little difficult. I mean, I support it, obviously. It’s incredibly important. But it’s a capitalist framework; there’s nothing about collective interdependency.”
Disability justice challenges the idea that our worth as individuals has to do with our ability to perform as productive members of society. It insists that our worth is inherent and tied to the liberation of all beings. Like transformative justice, reproductive justice, and environmental justice, it implies a movement-building strategy and an anti-capitalist critique. But now, a decade after those defining conversations that gave rise to disability justice, a lot of white disabled people are using the term without knowing exactly what it means. In fact, they are often using it to advance their careers as academics and consultants, instead of listening to and amplifying the voices of people of color in the movement.
This is the point: Queer people of color are the leaders of this movement. (Clarification: This point was emphasized through the leadership and input of Kiyaan Abadani, a trans/queer diasporic Iranian crip who works with Sins Invalid.) If you are organizing something and you ask queer crips of color to be involved, and they say This is what we need to participate, and you say Never mind, that’s too hard, then that is not disability justice. If you are mingling with national organizations, building social capital, and advancing your career, instead of building community, that’s not disability justice. If you are white, and you’re not explicitly challenging white supremacy in your daily practice of living, then you’re not doing disability justice.
“I think a lot of people are using DJ as a stand-in for intersectionality, referencing brown crips only in language, but not centering actual disabled people of color and queer and gender non-conforming people,” Patty said. “It is a movement-building framework – a practice, not an academic theory.”
Disability exists in every sector of society: in immigrant communities, in prisons, in religious and spiritual communities, among veterans and homeless folks, among children and elders and everyone in between, so every movement has to advance disability justice, and vice versa. A movement that sees some people as disposable or able to be sacrificed is not disability justice. Liberation can’t happen alone; we have to reach toward one another. Whether online, in our bedrooms and living rooms, in letters passing through prison guards’ hands, or in the streets, we are part of a growing movement, and we are just developing the practice right now. We make the road by walking, rolling, prancing, crawling, limping along it.
Speaking for myself: As a superfat white, genderqueer, Jewish woman with a lifelong physical disability and PTSD, my participation in disability justice takes many forms. For one thing, my ability to sit comfortably, breathe, focus, and participate is integral to the needs of the group. At the beginning of every meeting, we check in about access needs: What do we each need to be able to participate? If I need to take off my leg and plant myself on the floor where I can shift position often, if I need a glass of water, if I’m having a hard time processing information and need to be slow and deliberate, the group takes that into account. We all do our best to be mindful of one another’s needs and show up in the ways our abilities and skills allow. In the process, I learn to pull my comrade’s arm up so she can use her keyboard and to wait patiently while another crip types in his electronic talker. I learn to make my body and clothing scent-free so as not to trigger reactions in my friends with scent sensitivities and environmental injuries. I learn to clarify and separate conversation from action items in meeting notes so everyone can follow them and to interact with people through Skype when they’re not feeling well enough to show up in person.
I also get to be my queer freaky self, to be sexy and empowered, and to reflect other crips’ beauty back to them. I get to create performances that not only allow for, but also revel in, my embodied physicality: dressed as a baby bird in a nest made of artificial limbs; wearing a mermaid tail and singing underwater lullabies to giant puppet snails; brawling with another genderqueer Jew, WWF-style, to a voiceover about complicity, responsibility, and living in a body.
Last summer, when the Israeli military was bombing the fuck out of Gaza, we raged and cried over the fact that, among other atrocities, hospitals, rehabilitation centers, and ambulances were being bombed. We talked for hours every day and late into the night, for several weeks, strategizing about how to respond. We withdrew from a festival that accepted Israeli “pinkwashing” funds, and we released a statement, a graphic, and a video, tying disability justice to freedom for Palestinians, asserting that these were attacks on disabled people. Then, a few months later, when Urban Shield was coming to Oakland to train police in military tactics, Sins Invalid protested at the hotel where it was taking place and released a statement about police violence against people of color with disabilities.
As a white disabled activist, when I respond to a call from black-led organizations to get out in the streets and protest, I want to highlight racial profiling and violence against black people with disabilities. I want to raise awareness about Kayla Moore, a black trans woman with a mental health disability who was murdered by Berkeley Police in 2013, and whose death was partially blamed on “obesity.” And when the people of color with disabilities in my life take the time to check me and help me course-correct around issues of tokenism, I am going to listen and carry that information back with me to the people I’m organizing with.
After all these years of seeking, I am finding spaces where my big fat white femme whiskered aching buzzing zaftig hard-to-move one-legged strong and soft body can feel at home, can speak up when I am called to, and be quiet when I need to, for the sake of all of us. This is disability justice, in action, in process. And it is revolutionary.
*This article was written with significant input and feedback from Patty Berne and Kiyaan Abadani.[Headline image: The photograph shows the author, a white woman dressed in feathers with her arms outstretched and her head leaning back. She has short, light-colored hair and tattoos on both of her arms. Next to her, a small brown table is visible. Photograph ©Richard Downing 2009, Courtesy of Sins Invalid.]
Absolutely briiant article! My daughter had a brain hemorrhage when she was 15 and had to re learn how to walk, talk, eat, drink and remember all over again. She got Epilepsy as a result too. There has been very little support for her/us since the 9 months in rehab. My daughter is now 32 and still finds that the prejudices of others with regard to her disabilities affects her every day life. Of course she laughs it off but wonders why it is her who has to understand or make excuses for others reactions/actions towards her. She has faught tooth and nail to survive and then to almost finish her degree…which is why, as a Mother and as a Theatre Maker myself, I am so excited by your article and want to let you know that my daughter is writing her dissertation which looks at intersectionality and the Descriptions and Experiences of Women with invisible disabilities! As a young beautiful woman, who doesn’t look dosabled, people brush pass her, walk into her, look disdainful at her when she doesn’t get off her chair to let someone else sit down…these are daily happenings and Natasha wants to give voice to Women with invisible disabilities rather than their carers, which the ethical board suggested she concentrate on instead. But my daughter faught to be heard as someone with experience of it and got the go ahead! It will be a very interesting especially as she is not doing this research for herself and has no assumptions as to the outcomes!
Please excuse my spelling mistakes! Brilliant and Disabled not briint and dosabled! I can’t edit now that I have submitted.