a diversity of tactics of care.

radical love letters #77

The months before my therapist officially said the letters “PTSD,” I was behaving erratically. I was living alone for the first time in my entire life, in a technically-illegal basement apartment in Boston that didn’t even have a stove. I had ended a relationship with a partner of four years, took my first full-time academic job, and moved across the country. Prior to that devastating little nearly-windowless unit, I had lived either with my mom, roommates, or partners. At 28, I learned what happens when one is left to their own devices, when one has nothing but time with one's own thoughts. I had an uneven childhood, which is to say some of it was wonderful, but other parts were difficult. That’s how I’d understood it most of my life. Mom and I experienced the challenges of a life-altering car accident, poverty, and an abusive man, but we got through it. The horrors were in the past, I had a PhD, clearly I got through it. For a decade after I left home, I had the support of roommates, partners, and at least a semblance of ‘community’. My attachment wounds and trauma ghosts didn’t have much space to show up; I was busy, surface-level cared for, distracted. 

On the cold tile floor of that New England basement, I had less to distract me. It’s trite now, but as Bessel Van der Kolk’s titular wisdom reminds us: The Body Keeps the Score. The unresolved trauma and unexplored attachment wounds reared their heads as a relapsed eating disorder, occasional reckless drinking and hookups, and ultimately harmful communication in my new romantic relationship. Confused and afraid and very broken down, I spent a lot of therapy sessions in the fetal position on the big oversized chair of the office. “This is trauma,” Alex said. “A lot of people with Complex-PTSD experience things like this.” PTSD? I knew enough to know that people beyond war veterans could experience it, but could I–me, who is clearly just fine–really have experienced trauma? Once I let myself believe it, I remember a feeling of relief in my body that felt like collapse. I sank further into the chair. There was a thing, a sickness to explain all this. My brain was bad, not me. Being pathologized and offered diagnosis, in that moment, was a gift. 

“Diagnosis is a tool rather than a fact,” says queer crip theorist Eli Clare, “an action rather than a state of being, one story among many.” 

Like any tool, diagnosis and pathology can be used for aid or for harm, which has been the case both historically and contemporarily. I do not unabashedly “believe science” because science has brought us phrenology, forced sterilization on low-income Black, Brown, and indigenous communities, and other horrifically racist rationalizations for various forms of surveillance and control. And of course, it is the basis of the Diagnostic and Statistical Manual of Mental Disorders (DSM), which, among many other egregities, considered homsexuality a "constitutional psychopathic inferiority” until 1952, which was then updated to a "sociopathic personality disturbance.” Further, Western medicine itself is always-already colonial; the Medical Industrial Complex (MIC) helped stamp out traditional ways of healing utilized by indigenous communities, and primarily focuses on ways to treat symptoms without ever interrogating root causes of the vast majority of dis-ease (capitalism, colonialism, white supremacy, and so on). It is a bad system. 

There are, simultaneously, many reasons to seek relief in a flawed and violent institution that is, mercifully, composed of actual human beings, some who share the above analysis and seek to mitigate harm. Additionally, in many cases, it is (or at least feels like) the only option. Disability justice thinker and activist Mia Mingus concedes this: 

“Many of us don’t want to have to turn to the MIC, yet have few other viable options. And still many of us are fighting for access to current (or better) services within the MIC. There are no easy answers and the contradictions we are living in are often painful and unjust. Similar to our work to resist and challenge capitalism or to create alternatives to the police and prisons, resisting and challenging the MIC is rife with complexity and there is so much we need that we don’t have yet.” 

Other critical disability studies and radical disability justice activists are helpful in making sense of these contradictions. A foundational concept from these thinkers is interrogating socially constructed models. The medical model of disability locates the problem within the bodymind of the disabled person; this view tends to ignore any structural causes of disability and seeks to cure or fix the perceived defect. The social model of disability, on the other hand, locates the problem in the ableist society; there is nothing ‘wrong’ with a non-normative bodymind, rather there is something wrong with a world that refuses to accommodate it. Alison Kafer extends this to the political/relational model of disability which: 

“neither opposes nor valorizes medical intervention; rather than simply take such intervention for granted it recognizes instead that medical representations, diagnosis, and treatments of bodily variation are imbued with ideological biases about what constitutes as normalcy and deviance. In doing so, it recognizes the possibility of simultaneously desiring to be cured of chronic pain and to be identified and allied with disabled people.” 

Here Kafer is suggesting we can both name the social construction and historical violences of medicine and diagnosis while also choosing to engage them. Kafer goes on to offer the political/relational model of disability as a way to amend the social models' absence of intersectionality and attention to other means of oppression that overlap with ableism, including racism, sexism, and so on. 

As a queer anarchist, rejecting pathology is in line with my politics and my community. But also as a queer anarchist, letting people make decisions for themselves about their bodies and recognizing the limitations for care in an oppressive system is also in line with my politics and my community. 

The stakes of these nuances seem high in a global health pandemic, an increasingly toxic environment, and in a society that upholds disabling structures. Reactions to this reality range from: anti-pharmaceutical/anti-psychiatry dogmatism; ignorant liberal embrace of science, medicine, and anything that goes along with it; an uptick in claiming mental illness as an identity; a panic about what some describe as TikTok-fueled diagnosis culture; and a variety of other polar contradictions. What this reveals, to me, is an entirely understandable manifestation of fear. It is scary to be alive on a dying planet; it is frightening to think we are either entirely powerless against illness or entirely in control of it. 

Something else that trauma therapy has taught me is that people with trauma are often inclined to binary or black and white thinking; we must either entirely reject Western doctors, or entirely embrace them. I’m okay with extreme thinking, sometimes (e.g. all prisons are bad), but navigating the complexity of living is often a bit more (at the risk of being annoying) nuanced. 

Politically, I am suspicious of diagnosis; I think we would all do well to deconstruct the categories of a variety of mental illnesses – from attention ‘disorders’ to addiction, and so on. But I also know that meds have been life-changing (and sometimes -saving) for people who use them. I also know that the identity of “addict” has kept people safe. And, importantly, because it was required to access resources, the label of “gender identity disorder” has enabled many trans people to be alive with us today. My PTSD diagnosis kept my head above water; I had a thing to lean on, a framework to help me make sense of myself, a little less self-blame. I know how empowering and relieving it can be. I know how diagnosis can offer a sense of community, and I know community can be a small part of fighting the alienation that further contributes to our collective dis-ease. 

We are all making do with the tools we have available to us. We are making choices based on our politics, our pleasure, our survival. These things butt heads. I, for example, have chosen against the use of SSRIs, despite being offered them during a period of ongoing depression, and previously, during an especially anxious time in grad school. I tried once, really didn’t like it, and stopped. I generally understand dips in my mental health as either situational or a result of capitalist alienation, unresolved childhood trauma, and if I’m not getting enough leafy greens. (Even some medical doctors acknowledge this. In Raj Patel and Rupa Marya’s Inflamed: Deep Medicine and the Anatomy of Injustice, they note, “Your depression and anxiety may be less an intrinsic part of your character than a consequence of experiencing intersecting forces of colonial capitalism.” And yet neither of them, as far as I know, are fighting a war against Wellbutrin.) I personally don’t want pharmaceuticals in my body, for as long as I can avoid it, and I’m obviously in a position where I feel like I can survive without them (which is not the case for everybody). Because survival is taken care of, I get to make that choice as a political and spiritual decision. Contradictorily, I drink alcohol, eat sugar, and get cosmetic injectables (addictive and/or poisonous substances). Those are pleasure decisions. And I truly (truly!) don’t begrudge anyone their choices. Survive, be aligned with your values, seek joy; sometimes these things will match up, sometimes they won’t.

In order to think through all of this, I continue to turn to critical disability studies, to queer crip radical activists, to the harm reduction community, and, of course to the elders and ancestors who led the fight against AIDS. Radical queer history teaches me to deeply distrust and fight the MIC and also demand it give us options. Access to drugs was one among the many, many things that were necessary to take care of people living with HIV/AIDS, but, absolutely, our people needed (and still need) meds. Fuck Western medicine, and also thank god for it. In an ongoing apocalypse, we have to hold contradictions like this. We have to find ways to live, while also dismantling the systems that keep killing us. 

Abolition and mutual aid teach us we can do both at once. Abolitionists decide whether or not to support reforms on the basis of whether or not the reform will ultimately empower or provide more resources to the prison system. Building a transgender wing of a prison is not an abolitionist reform; working within the system to decriminalize drug use or sex work (etcetera) is. Mutual aid stands apart from charity because the people who participate in it are simultaneously involved with work to dismantle the systems that create unequal conditions in the first place. Mutual aid work is not nonprofit work, because nonprofits will only be alive as long as capitalism is, whereas mutual aid groups’ end goal would be to be rendered obsolete (in that everyone would have their needs met without burnt out activists and community members scrounging to create support). We can apply the same rules to our engagement with the medical system. 

Ultimately these debates – pro or anti- SSRIs, diagnosis as empowering or disempowering, medical transitions or not, Staying Home Keeps Us Safe or Risk Makes Life Livable, etcetera – are demanding we get clear on what it means to be well. Health is not a moral imperative, but some of us want to dwell there, and if you believe in the truth of interdependence, our health is inextricable from the health of the planet (and vice versa). What do we owe our bodyminds? What do we owe our neighbors (human or otherwise)? What do we need for survival right now? What can we dream for the future? What could we give up? What could we gain? 

In his beautiful autotheroetical book Virology: Essays for the Living, the Dead, and the Small Things in Between, microbiologist Joseph Edmundson explores similar questions related to wellness in the time of a pandemic. He says our bodies are in a “quantum state”, that we are all “constantly both sick and well.” Society, too, he says, is a quantum state of sick/well. “It may never work,” he writes, “but I want to live a life dedicated to pushing the needle in the direction of the well, not for my body–a true lost cause–but for us, our world, and the people we’ll leave behind when we go.” 

I want to live that kind of life too, dismantling sick systems, and all of us armed with a diversity of tactics of care.