Feature Issue on Disability Rights, Disability Justice
Rowing Together
We're moving from disability rights to disability justice, which is about meeting people where they are and bringing in everyone, including non-disabled people. Disability rights will always be here. We have to know, and fight for, our rights. But historically, the Disability Rights Movement has been centered around white maleness. Disability justice tends to be more intersectional, considering how dimensions of identity in combination affect us. It focuses on the most marginalized among us. In organizing, I always work to center the advocacy around the most marginalized people in the room. And if the most marginalized people in the room are white women, for instance, then our room isn't diverse enough. We need to add more people to that room. That is what disability justice is to me. We must work together to use a justice framework to create the most inclusive environment possible.
I have a right to free speech and to live in the most inclusive environment possible. It is also my right to have PCAs so I can live in my own home. And it's their right to have a quality of life and pay their bills and take care of their children. We support one another, and that is disability justice. We need to demonstrate allyship, because the alternative is isolation. When folks are isolated, their health, social lives, work, and relationships all deteriorate. There has been some pushback in acknowledging the role of disability justice in the broader disability rights community, but both movements need to be in solidarity.
We need to pressure policymakers to see how vital support workers are to community inclusion. We need to recognize the complex skills required of a qualified direct support workforce. People who support individuals with disabilities depend on wages to pay their bills. Professionalism requires training, education, and certification. Self advocates and disability activists are in the perfect position to bring about the change we need. The biggest thing that I learned when fighting for my care and care for my family, is that if my workers don't have a good quality of life, they're not able to give me a good quality of life. So, we must rise up together. Unions could play more of a role in organizing the care industry. A mass of people is more powerful than the few at the top who have most of the power and money. There is a huge opportunity to understand unions and organizing as an example of allyship.
The author, at the Institute on Community Integration. Photo by Connie Burkhart
My advocacy truly started through my own experience at a “Crip Camp” designed for people with disabilities. Many people have the experience of going to a summer camp, and I was a proud camper from age 8 to 19. I absolutely loved every moment of it! When my friends from home would ask what I did there, I would defensively say that we do everything that anyone does at camp: fish, campfires, sing, ride horses and we even had a zip line. This was all true, but so much more was happening there. My summer camp for people with disabilities taught me how I would do all the things I would learn later as the Sins Invalid 10 Principles of Disability Justice.
Before coming to work at Advocating Change Together (ACT), I organized in different community groups with a disability lens. Through my union, SEIU, I learned how to organize politically and how to knock on doors all over the Twin Cities so our voices would be heard. Those skills are universal and helped with organizing folks within the disability community.
It’s about meeting people where they are, understanding what they need and what they want to see from their community, and trying to bring them to that point. And that's the same goal of self-advocacy. I hope that we can really grow upon what some of my predecessors in the Disability Rights Movement started. What is happening right now in the broader disability community is that we're moving from disability rights to disability justice, which is much more intersectional. It is exciting to see not only the advocates flourish in disability justice, but we also see more side-by-side connections in the community with non-disabled people, too.
Disability rights will always be here. We have to know, and often fight for, our rights. But historically, the Disability Rights Movement has been centered around white maleness and disability justice tends to be more intersectional, considering how a collection of factors or dimensions of identity in combination affect us, and more focused on the most marginalized among us. In organizing, I always work to center the advocacy around the most marginalized people in the room. And if the most marginalized people in the room are only white women, for instance, then our room isn't diverse enough. We need to add more people to that room, or that table. That is what disability justice is to me. It may mean something different to others, but that is what makes this movement beautiful.
We must work together to use a justice framework to create the most inclusive environment possible. I have a right to free speech and to live in the most inclusive environment possible. It is also my right to have PCAs so I can live in my own home. And it's their right to have a quality of life and pay their bills and take care of their children. We support one another, and that is disability justice. We need to demonstrate allyship, because the alternative is isolation. When folks are isolated, their health, social lives, work, and relationships all deteriorate. There has been some pushback in acknowledging the role of disability justice in the broader disability rights community, but both movements need to be in solidarity. I link arms with other people who have the same, similar, or even different issues as me, but we have common values and we're going to come together and be stronger together. No matter where you are on the political spectrum, something that everyone can acknowledge is that when more than one or two people come together, they can get more done! That should be a universal message for the disability community. To be fully included in our communities we're going to have to link arms with allies who share our values.
Of course, coming together as a community can’t happen without fixing the care system. We need to continue to put pressure on policymakers until they see how vital support workers are to community inclusion. This has to be a priority for them. We need to change the narrative from seeing the caregiving provided by family members as sufficient to recognizing the complex skills required of a qualified direct support workforce. People who support individuals with disabilities depend on wages to pay their bills. Professionalism requires training, education, and certification.
Self advocates and disability activists are in the perfect position to bring about the change we need. The biggest thing that I learned when fighting for my care and care for my family, is that if my workers don't have a good quality of life, they're not able to give me a good quality of life. So, we must rise up together. People with disabilities won't do better if the workers don't do better. The workers won't do better if the people with disabilities they support don't do better.
Another problem is that we don’t even know what to call workers who provide this care. Depending on the population, they might be called personal care assistant, direct support professional, certified nurse assistant, and on and on. This creates another barrier and diffuses our collective power. We could have a whole system where you just have care work. Maybe you need help with your lawn, maybe you need help around the house. Maybe you need help with showering. Maybe you need help with waiting in lines. Maybe you need help with behavior. Maybe you need help with tracking and paying your bills. All of that is considered care, but it's all in different programs and with multiple ways to access it, which is a huge barrier to everyone.
The combination of collective power and better government accountability is needed. Unions could play more of a role in organizing the care industry. A mass of people is more powerful than the few at the top who have most of the power and money. There is a huge opportunity to understand unions and organizing as an example of allyship. My experience in union organizing was much like my experience in my summer camp. I support your issue; you support my issue. We lock arms together, and we push forward.
Summer camp was fun, and it taught me the value of cross-disability solidarity. When meeting lots of new kids, it seemed like we were comparing each other's bodies and mobility devices. It resulted in us learning how to do things together because we understood each other’s strengths. One of my favorite accomplishments was learning how to row a boat with someone else who also used their feet instead of their arms. We helped each other get in and out of our wheelchairs. This allowed us to play pranks on our counselors, but what it gave me most was an everlasting confidence that I could contribute, and so could others with disabilities. Disability justice may be a beautiful set of principles to some, but for me it is how I move through the world.