On November 19, 2015 Alice Wong interviewed her friend Patty Berne at StoryCorps San Francisco for the Disability Visibility Project. Below are some condensed and edited excerpts from their conversation.
On disability justice
Patty: I think people are often more familiar with both understanding of a rights based framework than a justice based framework in general, regardless if it’s racial justice or reproductive justice. Those are, I think, a little bit less clear for people oftentimes than the idea of a rights based framework. Just to kind of distinguish that a little bit, when we’re talking about individual rights, they are exactly that, they are individual rights and they are … So, the framework that individual rights are based in is legal framework. Something that one could litigate, and based on individuals experience of marginalization, discrimination, et cetera. Again, there’s an assumption that rights are enforceable by the state and defendable by the state.
I think that’s quite different than a justice based framework in that justice frameworks are about collective bodies. It’s a framework that one would call pocket art movement organizing and building power as a collective, as a sector so to speak when doing popular movement organizing and justice. The thing that I hold very central is that rights can be “granted” and taken away, and that justice exists outside of any legalistic framework, but actually is based in our dignity and our integrity and wholeness as communities, and they’re kind of both concepts and meanings, and I think practices that are about how we can live together, multiple communities, multiple nations fairly with each other, and it’s really kind of square zero as opposed to square 1 or 2. Justice is about how we live and love and practice that every day interactions. It’s not something that can be taken away.
Alice: Yeah, and it’s not something that you possess. Right?
Alice: It’s inherent in who we are as people.
Patty: Right, one would hope.
Alice: One would hope. That’s the goal, right?
Patty: Yeah, and as collective, as groups of people, not just as individuals. Given that disability rights are something that I feel quite literally I wouldn’t be sitting here today if it weren’t for the Disability Rights Movement. I think there were huge advances made by the Disability Rights Movement in terms of codifying legal rights for people with disabilities, particularly centralizing people with mobility impairments.
At the same time I like to think of them as cliff hangers. Not like, “Oh, these are things that the disability rights organizers abandoned or forgot about,” but every movement has cliff hangers. It can take you so far, and then as awareness moves forward both because of new understandings and new participants in movements, … it’s another generation, another iteration. Actually, it’s interesting, when Mia Mingus and I first talked about Disability Justice, we were really clear about not having it be a second wave of disability rights, although we did talk about disability rights as a first wave, and what were the pros and cons of calling it Disability Justice…
…I think Disability Justice as a framework understands disability within a social justice context understanding that we all live in multiple power relations. So, within white supremacy, within patriarchy, within capitalism, within heteronormativity, within enforced interbinaries. We’re also living with anabolism and all these different oppressions, structural oppressions interact with each other, and rather than centralizing one … because you know, what the disability rights movement did was really centralize disability almost to the invisibilization of other identities.
Alice: Almost to a detriment of the lives and the experiences of, for example, people of color who have disabilities.
Patty: Right. It makes sense because the people that were leading were white and middle class, and that was their primary focus perhaps of marginalization, but when you’re a disabled woman of color, there are many, many ways that we get undermined both individually and collectively, and many ways that we can draw on our strengths. I think Disability Justice firstly interacts with the whole concept, which is not new, of intersectionality. Disability does this also which is, I think, a very key part.
Disability Justice is really bringing our bodies into the conversation because I think disability rights was trying to assert a sense of normalcy around disability. In fact, of course, disability is a natural part of being in a body, just like being older is a natural part of being in a body, and being a toddler is a natural part. It’s not like we’re doing it wrong when we’re disabled or when we’re old, it’s just what it means to be in a body. We come in various forms and shapes and at the same time, because the disability rights movement is essentially an assimilationist movement, it didn’t want to bring the bodies complexities into the political [inaudible 00:13:11] so to speak. It kind of maintained the privacy around how we are distinct when we have nonconforming bodies, non-normative bodies.
Not only do I think that’s unnecessary, like I don’t need to be ashamed or averse to the change of my physical existence, but also it’s a huge strength for me as an individual and collectively, like we actually … I’ve learned a lot from living in a crip body, and I don’t need to leave those understandings aside. It’s actually a huge asset. It’s part of who I am, so it’s a huge asset to me and to the communities I’m involved in.
Working toward a future world that embraces disability justice
StoryCorps Facilitator: I’m giddy with excitement listening to this conversation…if we all lived in a sense of exactly what you’re talking about, Disability Justice, if we all wanted and were working towards thinking about communities and people beyond their ability to mimic an able-bodied white middle class norm, what would that look like if we were really able to move towards that and were really able to start embodying that?
Patty: Right. I think the individual decolonization process for a body, and decolonization not just from formal imperial colonization, settler colonization, but also decolonization from patriarchy and decolonization from specifically like expectations. I don’t normally have expectations.
What would that mean for the land too? We can create our own little liberated zones, but at Sins Invalid pretty soon we’re going to encounter resisting able-bodied normativity…we’re going to start having tops optional days so that we can just be like, “Yeah, this is what it would be like if actually all of our bodies were … if some bodies weren’t seen as desecrating the environment by being invisible, if all bodies were accepted and seen as beautiful. “
We can make little liberated zones for ourselves, but what would it also mean for the land? I think the process of decolonizing out bodies and decolonizing actual land are part and parcel of each other because to me we’re not outside of the earth. We are with it and I love … I call them my babies. I’m more like their baby. I love them. My plants and the trees in my yard. They’re literally, like we would die. They would go on, but we would die. What would it mean if actually the integrity of water was respected and not privatized. What would it mean if the integrity of trees were respected and privatized. A being that’s 500 years old, 2000 years old was revered the way it should be. Be it like a sea turtle or a tree.
Alice: A whale!
Patty: If we just could actually have respect for ourselves and the world.
Patty: To me that’s where I want to live. That’s where I want to be.
Alice: That’s what, I think, ultimately people talk about, liberation. I think that’s what it kind of looks like.
Patty Berne is a Co-Founder and Director of Sins Invalid. Berne’s background includes advocacy for immigrants who seek asylum due to war and torture; community organizing within the Haitian diaspora; international support work for the Guatemalan democratic movement; work with incarcerated youth toward alternatives to the criminal legal system; advocating for LGBTQI community and disability rights perspectives within the field of reproductive and genetic technologies; offering mental health support to survivors of violence; and cultural activism to centralize marginalized voices, particularly those of people with disabilities. She is pursuing a Psy.D., focusing on trauma and healing for survivors of interpersonal and state-sponsored violence. In 2008, she had a chapter published in the Routledge Press book, Telling Stories to Change the World, on the work and history of Sins Invalid. She currently chairs the Board of Directors at San Francisco Women Against Rape and is the 2009 recipient of the Empress I Jose Sarria Award for Uncommon Leadership in the field of LGBTQI and disability rights by the National Gay and Lesbian Task Force.
Patty’s bio from Sins Invalid: http://sinsinvalid.org/artistic_core.html