Disability Justice and Mental Health, Pt. 1

Beatrice Adler-Bolton on reclaiming physical and mental illness to fight against the state.

This is part one of a two-part interview with Beatrice Adler-Bolton. The second part will be for paying subscribers only.

Beatrice Adler-Bolton is a disability rights activist, the author of the forthcoming book Health Communism (Verso, Fall 2022), and co-host of the podcast Death Panel. Beatrice has a rare disease that she’s struggled to get care for for years, and that’s informed her view of disability and health in the United States.

[This as-told-to has been edited and condensed]

I’m 31 years old, and I have been chronically ill and disabled since I was 19. So, I think since I got sick my interest and disability rights of justice as well as mental health had been very primary. My father is also disabled, so I grew up thinking about a lot of these issues and trying to understand the ways that my life and my family's life and my father's life changed when he became disabled when I was about 10 or 11. And it was really interesting to sort of watch the process of someone be transformed both in their circumstance in their community, in their work and their economic status just by one shift in the understanding of their pathology.

Since then, I haven't stopped trying to think through these issues of why we basically tie impaired bodies or bodies that are not normalized as dangerous or less valuable bodies and why we have so many systems that are designed to perpetuate the oppression and exclusion and sometimes incarceration of people just for having bodies and behaviors and minds that are not the norm. Because the norm of course is an arbitrary concept that we've all collectively agreed upon, but it's not something that's been equally agreed upon. It's been agreed upon by those in power, and frequently it's used to justify all types of state cruelty throughout the history of the United States and the world.

When I went to school at Cooper Union, and then watched the Affordable Care Act get passed, I saw a lot of my peers who had jobs and didn’t really have to worry about insurance. And I watched politicians promise that pre-existing conditions would be covered, promise so many things that ended up not being true. And I was basically working myself to death just to cover the costs of my prescriptions. And it became this endless cycle of living just to pay my premium and co-pays. I was getting sicker. At a certain point I realized I was too sick to keep up with that cycle, so I applied for disability. I have a rare disease, and the whole process of getting disability made me learn how the whole system works—how they evaluate income, how they measure the value of a person relative to their medical needs.

All these programs—Social Security Disability Insurance (SSDI), medicare, they’re all so inadequate. There’s a waiting period before you’re certified disabled and can access the benefits of those programs, and in that period, 11 percent of people die. 

That whole process is what caused the curtain to fall down for me. To see how the state machinery works. If you get SSDI, it means a person can no longer work—you have to prove beyond a doubt that you were so useless to society, you have to beg the government to recognize your lack of economic value. It was the most dehumanizing, depressing experience I ever went through. And it completely fucked me up for a few years emotionally. To acknowledge the worst parts of my disease, to have to beg a judge for my life.

As Beatrice navigated these systems herself, she began reading radical disability theory, and learned that her illness, and illness and disability in general, are contextual to society. 

I’d already been reading Ellen Samuels, a scholar who does a lot of work on the fantasy of identification. She sets up this idea that these systems we use to empirically certify people’s bodies as one type or another are social constructs. Which doesn’t mean the differences in bodies aren’t real, but that the structure that labels and sorts people is inherently based in the state’s own needs, and inherently based in ideals of eugenics.  During that time I also came across SPK, this really radical German mental health group. And between all my readings, the main theme that emerged is that all care, mental and physical, is really about health for the sake of being a worker. It’s about preparing the body to return to work. So much of the process of certification of a disability is marking the border between your value as a worker and your lack of value. And when this labeling, this devaluing happens, it labels you for premature death, it labels you for violence, for loss of freedom, for loss of autonomy. So much of the misery of disability is not the disability itself but how that disability fits into capitalism, the stigma, the violence.

So I have become really interested in how these labels can be used, for patients to seize upon their illnesses and turn them into a weapon rather than a thing that is weaponized against you—if illness can be seen as a radical place for struggle, to take your inability to fit in as the ideal worker and use that to try to undermine capitalism. 

There seems to be a debate between people who are more steeped in disability activism and those (like me) who are more steeped in the world of psychoanalytic theory about whether we should be thinking of differences in brains as similar to physical disabilities. But to Beatrice, this is a false binary.

One of the reasons I have gotten further into disability studies is because I think many of the structures that are set up in our for-profit health economy are meant to fracture us as a constituency—we get separated into so many different categories which undermines our ability to collectively build solidarity. I don’t see how the goals are any different for someone who thinks mental illness can only be treated with pharmacology and someone who thinks mental illness cannot be treated with pharmacology. I think those two people have the same goals. 

I think the problem is that we live with a legacy of eugenics and scarcity, and ultimately what I want as a health communist is for people to have an anti-austerity mindset. To argue over whether mental health should be treated with meds or psychology or whatever is to view this as a zero sum game. We should have access to whatever care each individual feels they need. We shouldn’t have to choose.

What we have now is a system that attempts to commodify and profit from the amelioration of these symptoms. And when we argue with each other—viewing mental health as a disability vs. viewing it as something else; viewing diagnosis as bad vs. good—we’re participating in this zero sum mindset. We are so used to thinking, “if someone else gets something that means someone else loses out.” When you fall back on this idea of, “your idea of mental illness is totally wrong, and violent, and dangerous to me,” we are playing into the systems of power which uphold all the things that make us sicker and more miserable and more prone to early death. And we all deserve so much more. Everyone should get what they fucking need, we shouldn’t be in competition with each other for who has the best idea for care. It’s what I call “austerity brain”. The more we fall for that, the more we aren’t able to build a less miserable future.

I pushed back a little on Beatrice because I do think there’s a problem when people are over-diagnosis themselves. It doesn’t have to be a zero sum game, but if we believe these illnesses are inborn, then we allow ourselves to ignore the context of what’s making us sick (capitalism).

Well, right, pathology alone is never, ever enough. We’re so invested in it partially because the way we can access care and get our care paid for is through these diagnostic codes. But I think most people know that that’s an incomplete answer. Most people understand that the social determinants of health to be your housing, your food security, your stress, your job, your workplace, the conditions of work in general in this contemporary era—these are all factors which contribute to health. We need to be thinking about more than just the diagnostic code or the prescription, because that's not where care stops. That is just where it begins often. 

There’s something called bidirectional labeling. Which is that your label—being mentally ill, for example, doesn’t just define you, it defines society in opposition to you, as normal, or better. So there’s different ways to use these labels. If your diagnosis helps you find care, or helps you understand yourself, that’s very different than if that label creates a border between you and everyone else.

What we need to be doing is building coalitions that push for access to all types of care—medicalized disabled people, medicalized trans people—we all need to push for a society where all kinds of care are absolutely necessary. Which goes against the kind of labeling the state does and that we’ve done through history, as some people as deserving of care and others not, as some surgeries as being cosmetic and others medical. How can we destroy these barriers?

Beatrice doesn’t see the labels as the problem in and of themselves though. Rather, she sees how the state uses those labels to enact violence, and the fact that the labels are necessary to receive life-saving care, as the problem. 

I think it’s really important that people are creating these communities around labels of disability or mental difference. The #ActuallyAutistic thing is a good example of that, as people pushing against a nonprofit complex and a definition of autism that doesn’t really allow autistic people to speak for themselves. If these online communities are about creating more autonomy and community, that's good. It’s about building power through each other outside of a for-profit, medicalized context.

But I think people feel so much attachment to their labels partially because they're the only way to get care. If the labels are just about understanding yourself, that’s one thing, but if they’re used against you, if they’re used to separate you from society and enact violence against you, that’s different. So I think it's great that people are using identity to create mutually supportive decentralized communities, but I think part of the problem is like that all of these communities at the end of the day are sort of a response to trying to survive under this hyper categorized system of labeling.

Stay tuned for part two, which will only be for paying subscribers.