Dreaming Crip Futurity: Access to Healthcare, Access to Employment, Access to Independence
As presented at the 2022 Common Field Convening in collaboration with Megan Bent and Jillian Crochet
My art practice is about the things that are going on around me. These parameters are usually the genesis of creation when circumstances create the opportunities to make things, or sometimes a lack of creation, as has been the case for most of the past few years.
Disability and art are so deeply intertwined for me that I can't separate them. Art history, cultural history, personal history, all twist together and bind into a single trajectory that leads through the shadows of disabled history to the artist that I have become. My work is about reckoning with the very real struggles that can come with being a disabled person.
If this convening had been held a few weeks ago I would likely have presented you with a very different session. I would have told you about the struggles that many disabled people face living in housing and food deserts without transportation or access to medical care. I would have emphasized the need for accessible and holistic healthcare systems and for universal health insurance. But these past two weeks have broken me. As an activist who tries to advocate for the equal rights of others, the past few weeks have found me in a situation that is both new and familiar. Surprising and yet a dreaded expectation.
I won’t go into the specifics because they don’t really matter. This is a story that is echoed time and time again by other disabled people. In different states, at different companies, people with different disabilities, but here’s the short version: I work full-time at a public school in Vermont. I teach art and work as a special ed paraprofessional. I’ve been at this school for two years but this is my first year as a full-time employee. Ever since my contract was finalized I’ve been trying to get my needs accommodated. Now, two months later, this request has become an emergency. I’ve been in meetings with administrators for the last few weeks arguing for my right to be able to work my job.
This job has been both a necessary liberation and a confinement. I love the work that I am doing. The district provides me with health insurance that I can actually afford. My parents live 10 minutes from the school and are able to drive me to and from work without much difficulty. I am able to put much-needed money into my health care. But I also live in an extremely rural place with limited access to healthcare and no public transportation. My town of 1,100 people has one street of houses that are within walking distance of my work. For the last three years, there have been zero vacancies. Even if there were, and I had somehow managed to afford it, I would still be completely reliant on my parents for all non-work-related transportation because I cannot drive.
The past few weeks have been some of the most emotionally taxing of my life. I know the laws and what I am due. I have supportive friends and colleagues. I’m a member of a strong union. And yet this process has completely broken my will to fight. Being disabled in a capitalist society is exhausting, demoralizing, and dehumanizing.
Equal rights for disabled people in the workplace are protected by two different laws, the Americans with Disabilities Act, and Section 504 of the Rehabilitation Act. These laws are constantly being undermined by companies trying to find ways to legally discriminate against people with disabilities.
Last month CVS filed a lawsuit arguing that people with disabilities only have a right to bring discrimination claims if the discrimination was intentional. Although it has since been dismissed, this case would have prevented disabled people from filing “disparate impact” cases, in which the discrimination is in the form of “benign neglect”, rather than intentional discrimination.
Cases like CVS v. Doe are a terrifying threat to the support structures that disabled activists have been working for half a century to build. It could erode the few protections that are in place to help people like me work in a system that is not built for us.
More than anything else this experience has shown me just how small the system believes I am. They see me as a pawn who can be placed as they choose. But let me just say, that they chose the wrong pawn. I may not be physically able to do certain things but I am capable of so much more than they believe.
Crip time and capitalist time are not compatible, and as disabled people, we bear the burden of this disparity. How can we function as disabled artists when crip time and capitalist time run on different clocks? I wake up and leave for work, work from 7:30 to 3:30, go to a meeting or a doctor's appointment, and then go home and collapse. When is the time for creation? At the beginning of this talk, I said that the parameters of my life are the genesis for a lack of creation. This is what I meant. Crip exhaustion is not the same as being tired. It is a fatigue that draws you in so completely that you cannot move or think.
I spend most of my time in an anxiety spiral, jumping between my job and my health, my living arrangements, anxiety over my own anxiety.
As Jillian said, built spaces are constructed for specific bodies. I can walk up stairs, but I cannot drive. And in rural Vermont, not driving can be massively disabling. I need someone to drive me everywhere. Work. Doctor’s appointments. Groceries. Laundry. The public transportation in my area, and in much of the rural United States is abysmal. The image on the screen right now is a photograph of the house that I was born in. It has not been lived in since my family was forced to leave 24 years ago. I returned to photograph it a few years ago when I found myself living once again with my parents, a return to the childhood dependence that I thought I had finally escaped.
I dream of a future where I once again have independence. There’s a running joke in the disabled community. “Have you tried yoga?” My personal version of this is “Can’t you just get disability?” There’s a conception that as a disabled person the world opens up, that we can sign a form and magically receive money. Federal disability is so difficult to qualify for that it can often take two or three appeals to get it, if you even do. When you can not qualify because the court says that you’re able to work, based on the fact that you have been working, not because you can but because you can’t not. Especially when federal disability is a form of forced poverty that many cannot survive in.
I dream of a day when income and disability are not tied to each other. When every person, regardless of work-eligibility or familial wealth can have equitable access to health care. When dental coverage is not a luxury. When people do not need to choose between their health and their rent. I dream of all of us, not just those of us who are disabled having access to healthcare, access to employment, access to independence.
I dream of a future where the idea of uninsured and underinsured people seems like a fever dream. I dream of a future when going to the doctor does not feel like a minefield of hidden expenses. I dream of a future where disabled bodies are seen as people, not a computerized file of numbers. I dream that one day a doctor will look at my file and see that the person sitting before them is more than a sum of those numbers.
I don’t know how to bring about the systemic changes that we so desperately need. But sometimes these days it truly feels like I am drowning, and I can only keep struggling to keep my own head above the water in hopes that the future holds easier times ahead. These challenges are massive and it will take collective movement to make the changes that we need. In that spirit, I am going to take a few minutes to ask everyone here to join me in imagining what this future could look like.
Questions to think about:
What would equitable healthcare look like to you?
Crip Time, Capitalist Time, Art Time: What do these ideas evoke for you?