Access is for Everyone: Interview with Patty Berne, Co-Founder and Director of Sins Invalid
Lindley Mease: Would you share one or two moments in your journey before Sins Invalid? What were important moments for the development of your political self?
Patty Berne: My politicalization started when I was 16 (I’m 51 now). I started going to UC Berkeley. The movements that were developing in the mid-80s were grounded in national struggles largely in Central America and South Africa. I learned from leaders in the South African liberation movement and leaders from, for example, the Guatemalan democratic movement and the Haitian democratic movement. I was so honored and humbled to work with people who see the long-term vision of struggle, the long-term vision of success, and had an understanding of what a multi-generational struggle looks like. It was very important for my development because I think prior to that my politicalization was very much short-sighted or not developed. So gaining perspective from long-term movement leaders was important to understand our role not just in the moment but in history. Also to understand that movements are connected not simply in time, but through place. We are inspired by people around the globe. Our struggles against capitalism have to be understood in a global context, because that’s the way capital moves. Particularly in indigenous sovereign movements people think that the global understanding that people have is critical for all of us to commit to and understood our work as a part of. So that was a blessing for me to be incubated in these long-term visions.
Before we continue I want to acknowledge here that I have chronic pain so sometimes my words don’t flow. This is one of the realities of disability justice. We don’t have to marginalize ourselves from a movement simply because we are not functioning in the same way as someone else who is in front of us, beside us, behind us, to our left, to our right. What we contribute is valuable regardless of whether or not it is the same form as someone else. Sometimes I am really clear and other days I am less so.
To continue, another piece of my politicalization that was I was in an organization that understood the need for a united front, the need for action, and the need to organize multiple sectors. They recognized that all of our struggles are entangled. I’m not sure that’s the exact word. Yet when I tried to address disability they actually said to me that people with disabilities are not revolutionary agents. This was in the mid-90s.
It was such a strike to my heart and my soul that I was helping to build a movement that would marginalize me. Ableism was unquestioned.
I realized that I had to change the way I was working — and who I was working with. I am very grateful that I was working at an organization called the Center for Genetics and Society directing a project on disability, race, and eugenics where I could really develop an analysis of intersecting forms of oppression that included disabled community members, particularly disabled people of color, queer, and gender non-conforming. Essentially I could incubate disability justice as a framework. I’m really grateful that I had the time and the space to do that. I could look at how eugenics programs and reproductive control is used against multiple communities — not just people with disabilities — against women of color, against people who are poor, against people who are incarcerated, against so many communities. It allowed me to create a timeline and an overarching understanding of attacks on our bodies.
Although it was horrible to think of, it was really important for me to understand that for some of us our bodies are the site of oppression. Our bodies are contested territory. Understanding that allowed me to develop this framework of disability justice.
It was very painful, I must say, to always have to argue for the legitimacy of queer people, for the legitimacy of disabled people, for the legitimacy of poor community members. I was always doing presentations on eugenics, essentially having to demonstrate by my being that people with disabilities are valuable. And that disabled people of color have something to offer to social justice frameworks. It ended up being absurd that should have to even argue that. It should be abundantly evident that we are beautiful and powerful. So it was because of that position working on disability, race, and eugenics that I started Sins Invalid, because I needed a place where it was a given that we’re valuable and beautiful and we’re centered.
Lindley: Can you tell me a little more about the beginnings of Sins Invalid? How did this intersection and set of visions come to be?
Patty: We weren’t thinking of a longstanding organization initially. We were thinking of Sins Invalid as a one-time performance. The reason that we even thought of disability and sexuality and embodiment and justice all in the same breath was because Leroy Moore is an amazing, masterful spoken-word artist and so committed to the movement and so many communities and so many struggles and yet he is not seen often enough as a beautiful beautiful sexy man because of his disability. He is essentially neutered.
We started this because it is part of what we need, it’s part of what we are struggling for. It’s not just some ideological “because it is right.” This is us! This is us we are fighting for! People were not asking Leroy to date and I was like, “How can this be?! This is absurd. He is so hot!” Then turning that back on myself. I know that if I were to go to a club like El Rio which is a big place in the Bay where people go to hang-out and dance and get some action — I don’t want to go there and be rejected. I know the way that I look. Especially when I was younger. I’m still hot. [laughter] But I was a different kind of hot when I was younger. I know that people would have enjoyed my attention and vice versa and yet I didn’t go. All that to say that we wanted a place that not just our thinking and visions were considered beautiful, but also our bodies.
If the world is constantly telling me that the basis for my marginalization is because of something about my body then part of the way that I can decolonize myself from that narrative is to celebrate my body and to recognize my everything.
My juice. My hotness. My beauty. The power of my sexuality. I think that was really why we started: Sins Invalid to include sexuality at the forefront of our work.
So it started off with the four of us organizing a one-time event in 2006. There was such resonance from so many people in the audience that we were immediately getting hit with requests for workshops on disability and sexuality or how disability and social justice meet. Immediately there was all this demand for more. By 2008 we had established ourselves as an organization. My demographics and identities are as a queer, Japanese-Haitian, wheelchair-using woman. Leroy and I became leaders organizationally — we wanted to center disabled people of color and gender queer and gender non-conforming people of color.
At this point in 2018 we have a pretty robust organization with a cultural program and a movement-building program.
In our movement-building program we work with multiple organizations to help folks understand disability justice. So that people can responsibly engage in an anti-ableist politic before engaging in a disability justice politic.
Because just like with other forms of oppression you cannot just say “Oh, we made it accessible!” Just ’cause you take a sign off a door doesn’t make it a multi-racial place in a way that has some integrity. You have to do a lot of work decolonizing. So we work with organizations to understand that framework and do the work that it takes.
We also do performance-based work such as our film titled Sins Invalid, performance-based workshops led by disabled artists of color, visual art exhibits highlighting disabled artists of color, queer and gender non-conforming artists. And of course performances. We also have leadership development projects, an internship program, and mentorship for disabled people of color. We offer one-time workshops and educational events, like for university classrooms or community organizations that want to better understand disability justice.
Lindley: Can you tell one or two stories about this work in practice? Maybe something that shows what it means to build self-determination, what it means to build power.
Patty: One example of our practice of disability justice principles is the way we have meetings. We make sure that everyone is meeting! Doing access check-ins with the understanding that everybody has a body and every body has needs be they biological, sociological, intellectual, physical.
Here is a ridiculous and beautiful story. We use Zoom a lot because it makes conversation more accessible to more people, because people don’t have to local. And it is very difficult to commute for many of us because transportation challenges. So one person was on Zoom, four people were here and I was on new pain meds and I started having an overdose. Then the facilitator had a seizure. The response was bad-ass! We learned so much about what to do when someone is in a medical crisis — from each other! What are our access needs? And how do we meet them? No doctors were called. There was no 911. We are not like “Ah! Someone’s not feeling well! Marginalize them! Go away! We don’t want to be contaminated! You must be sent into the other room and closed off to handle it yourself!” It wasn’t like that. We took care of each other. It was a good example of being who we are and creating a space where we could hold each other.
Also, the performance world is not one that lends itself to people getting their needs met. The idea of “the show must go on” is really real. No matter what, just perform. If you hurt yourself it doesn’t matter; get on stage. The performance world is very uncompromising and I understand why: I know the cost having a stage manager, a tech director, an assistant tech director, a sound manager, five tech people backstage, a lighting designer — all these people can’t wait for one person just because they are not in the mood. Things have to run on a schedule. People paid money to see us perform. Things have to move. And at the same time, we do have needs. So one of the things that we’ve done is create check-in circles that happen backstage where people discuss what their access needs are. Even though performances are only three nights, we rent the space for an entire week of tech which is pretty much unheard of for a small group so that people can get comfortable in the space and learn what they need to learn about how to use their bodies and their artistry in that space. We have volunteers that get people food. We get donated massages. We try to be as thorough as possible so that the performers and artists who are giving so so much to the audiences are taken care of.
Lindley: What are some obstacles and challenges that you see in bringing disability justice to broader movement building?
Patty: Ableism. People don’t want to check their ableism. In the same way that patriarchy makes moving a feminist analysis forward difficult. You know?! [laughter] That’s the stumbling block. Many organizations have relied on ableist practices to survive and checking those — things like overwork, like expecting people to sacrifice their mental or physical health for an organization or movement ideal and not being there when the person needs support — that’s kind of the classic example.
Lindley: What are some of the most common mistakes that you see allies making when they are attempting to support disability justice?
Patty: I think that people see disability justice as a framework and a praxis for disabled people. And it’s not. It’s for anyone with a body. Nobody is made to serve capitalism — not just people with disabilities. Our bodies are not controllable and define-able within the productive standards of capitalism. For example, take 40 hours a week — I cannot do that. But most people are not able to work 40 hours per week every week and function happily. Nobody’s body is built like that! Interdependence is a natural part of every living system, including human systems.
So it’s not for disabled people or the special conversations that we need to include disabled people. No, it’s about the common sense bottom-line of what we need to do to include all people.
Our work is anti-capitalist. Think of access — collective access — as something that we can talk about as just a matter of being, not shame.
Lindley: I so appreciate what you just said about this not being about disability rights but about whole systems of dominance. What would you like to share with folks who want to be in solidarity with your work?
Patty: On the practical concrete side of our work, we need education around disability justice. We offer so many opportunities for training, workshops, and we will Zoom anywhere to have discussions about what it means to talk about disability justice and what it means to develop an anti-ableist praxis, what it means to address ourselves as whole complex human-beings. Participating in trainings would be a great way for people to enter into the conversation. Engage in supporting disability justice organizations and events and networks. Unfortunately there are not a lot of organizations that engage in disability justice work because so many people with disabilities are on some sort of assistance program that would not allow us to work and actually keep our services.
Invite people to engage in conversations that have a disability justice framework as individuals — not only as organizations. Invite people to engage in planning and commit to ensuring access for multiple ways of mobilizing — be it Zoom or paying for taxis.
You know it’s kind of ridiculous but I do think that often time people with disabilities are seen as The Other and disability is seen as an individual tragedy. It’s not. Disability is a way of being. It is an art. It’s a craft. What is oppressive are when systems — human systems, social systems, political systems — are organized to create violence against us, to marginalize us. I am not oppressed by my body.
