I was 25 when I learned that sickness was possible. Some people grow up with this knowledge, and others take longer to learn it. The day my doctor biopsied the nodule in my throat, I transitioned into the part of my life when I would have reason to wonder, is this cancer? Is this death? It was cancer; it wasn’t death. Not yet. Bodies are meant to break down, I realized. We’re meant to die someday. I somehow found it comforting, as if I had accepted a truth and now could get on with my life. Sometimes, you’re disabled. And sometimes, disability lasts a lifetime.
It’s been 10 years now, and though my maladies have progressed and regressed and surprised me again and again, I could never really think of myself as “able bodied” after that first biopsy. But that’s no real loss. What I’ve lost is my time: with hack sexist physicians, on hold with my insurance company, on my back with a heating pad. I hate that I’ve lost time hating myself for being in pain or feeling shame at being someone with a problem to be managed; I hate that what I’m supposed to worry about is the time I couldn’t work, because I was sick.
Illness, I think, is a temporality — and not, as Susan Sontag famously posited in Illness as Metaphor, a place, where everyone holds dual citizenship between the kingdoms of sickness and health and can pass between the two. The truer statement, it seems to me, belongs to Gilda Radner, who died young of ovarian cancer: “It’s always something.” Constantly dealing with those somethings takes time, and you can no longer even pretend that your life will go along in an orderly, productive way. But does anyone’s? I’ve come to realize that the bifurcation between the sick and the well, the disabled and the able-bodied, is capitalism’s intervention. In reality, there are just bodies, just us.
Two books published this fall trouble the binary between sickness and health. Health Communism, by Beatrice Adler-Bolton and Artie Vierkant, wholly refutes the possibility of being healthy under capitalism. The Future is Disabled, by Leah Lakshmi Piepzna-Samarasinha, argues that to meet a future full of catastrophe, we need to think and act like disability activists. These books want to talk about sickness as a source of solidarity, and a way forward out of our current, very unwell state.
Health Communism and The Future Is Disabled share the underlying assumption that capitalism makes us sick. I don’t disagree, though I suspect that people were also sick under feudalism. (Maybe the girlies didn’t have endometriosis in the Middle Ages, but they were also lucky if they lived to their 40s.) We now live in a time where we could deal with or even cure many of our ailments, but we are priced out of care or don’t have the time to access it — or we choose not to seek it, because interacting with the medical establishment can be a degrading experience, marred by medical racism and sexism and ageism and homophobia and transphobia and fatphobia and more. So perhaps it’s more accurate to say that capitalism keeps us sick.
In Health Communism, Adler-Bolton and Vierkant, co-hosts of the podcast Death Panel, argue that our capitalist society splits the world into those who deserve care and those who do not; namely, those who can work, and those who can’t. “Under capitalism,” they write, “to attain health you must work, you must be productive and normative, and only then are you entitled to health you can buy.” The authors find the very concept of health “a vulgar phenomenon”: We’re trained to see it as something we should work toward (and pay good money to maintain — from gym memberships to organic foods to medication to meditation apps), as a “possession, not an ontology,” something you could one day have, but not something you can ever be. Disease, meanwhile, is framed “as something episodic,” since most people experience health care as triage, in the form of billable encounters, instead of an ongoing state of being. If you have ever gone to work sick because you need the job to treat the sickness, you know the basic argument of Health Communism to be true: “health under capitalism is an impossibility.”
Separating out the well and worthy workers from the sick and unproductive surplus class is one of capitalism’s more insidious divide-and-conquer tactics. We all know the person who brags about not taking one sick day in 20 years. But if capital separates the workers from the unwell, capitalists still manage to profit from both. The state, which could sustain the sickened surplus, instead neglects them, and the private health care sector steps in to profit. Adler-Bolton and Vierkant coin the term “extractive abandonment,” (a variation on Ruth Wilson Gilmore’s description of the carceral system as “organized abandonment”) to describe how public subsidies flow to privatized facilities offering substandard care, from for-profit nursing homes to prisons. As a result, those in need of care are less likely to receive it where they could thrive, let alone exercise their self-determination. Instead, they are shunted into a “warehouse” of care, a “public-private partnership of pure immiseration.”
Health Communism is indebted to the work of writer and activist Marta Russell, who described how the category of disability emerged in the era of industrial capitalism. She also criticized the mainstream disability movement, arguing that it was limited to reformist efforts to improve the Americans with Disability Act (ADA) and other laws that, in her view, come from a scarcity mindset that’s afraid to ask for more than minimal accommodations. Such legislation might grant “access” (for example, ramps) but not challenge poverty or other underlying conditions affecting people with disabilities. (She called the ADA a “free-market civil rights bill” because it was originally drafted by Reagan appointees to the National Council on the Handicapped.) Adler-Bolton and Vierkant follow this model, arguing against any sort of rationing of care, since to limit care is to accept the burden model, where people with disabilities have an unpayable debt and are a eugenic liability to society. They are against the logic that worries constantly about the cost of giving people the health care they’ve been denied, instead of celebrating the idea (as though “somehow people would start doing, like, recreational chemotherapy,” Vierkant said in a recent Bookforum interview).
What Adler-Bolton and Vierkant propose instead is health communism: “all care for all people,” away from incremental reform, and towards a “radical abundance of care that functionally casts off centuries of ideologies of austerity, subjection, and extraction.” Their vision moves beyond equitable distribution, beyond “to each according to need,” and stops at nothing short of the end of capitalism. In other words, they’re shooting higher than Medicare for All. But it’s not exactly clear how we get there, except through the weight of capital’s own contradictions. “It is not necessarily the case that we are all sick. But none of us is well,” Adler-Bolton and Vierkant claim. Health is necessary for capitalism to function, but capitalism makes health impossible. It is this state of affairs, Adler-Bolton and Vierkant wager, that will bring the collapse of the system.
In their introduction, Adler-Bolton and Vierkant explain their omission of the Covid-19 pandemic, throughout which they wrote their book. To them, the crisis of the last two years merely affirms the argument they’ve been making all along. They reject the bromide that “we all learned something in the pandemic,” for “none of its lessons were previously unknown, and we are unconvinced that any such learning has taken place.”
But this isn’t entirely true: Thanks to Covid, a lot more people have learned what it means to be disabled. They (perhaps you) have now learned they are disposable. They were disposable when they were called essential, when they were asked to work through surges or come back to the office while the disease raged on. A lot of people came to appreciate that perhaps health insurance should not be tied to employment when millions were laid off and lost coverage at the beginning of the pandemic. And we all learned that it was possible, for a moment, to have free tests and treatment and even to work from home — all the nice things they said we couldn’t have.
The HIV/AIDS epidemic taught a similar lesson. Many cis, white, gay men who felt entitled to the power their whiteness or Ivy League pedigrees or Wall Street careers afforded learned that they, too, were disposable. And they learned about solidarity when the dykes who cut their teeth in the Women’s Health Movement organized with them, and when they saw they had more in common with IV drug users than their families who abandoned them. Perhaps the most important argument of Health Communism is that capitalism wants to keep the workers and the surplus from seeing their struggles as shared. That’s why the gray area in the book between “we learned nothing from Covid” and “capitalism will collapse under the weight of its own contradictions” is frustrating. All there is to do is to keep going, to support your comrades, and to trust that they will stay in the struggle after you’re gone. It’s what disability activists know how to do best, even when our loved ones die in the fight.
The pandemic also made widespread the lessons of mutual aid, and disability activists were at the forefront of that movement. This is the argument of Leah Lakshmi Piepzna-Samarasinha’s The Future Is Disabled, a joyous how-to manual for a world in which we’ve abolished the border between sickness and health. Because of the pandemic, because of climate change, because of mass incarceration, because of the cruelty of white supremacist capitalism, more people are becoming disabled. Disabled people are already weathering the end of the world and are keeping each other alive, and so disabled knowledge and skills are exactly what we need to survive the future. If Adler-Bolton and Vierkant want an overhaul of everything, Piepzna-Samarasinha believes we can adapt. Their book is a kaleidoscopic look at disability justice, and a little messy, like a soup made by many cooks, from what’s on hand, that nonetheless nourishes. There are lists of questions to ask yourself to identify your own needs and those around you, worksheets for mutual aid pod mapping, a chapter given over to disabled writers, artists, and organizers to describe their dreams of the future. There are recipes: for soup, of course, and for a lovely-sounding rosewater remedy for crying eyes.
The book is full because Piepzna-Samarasinha wants to show how full disabled lives are, how various, how full of love and connection. There is a gorgeous section where they mourn their friend, the queer Korean American disability activist Stacey Park Milbern, who did so much: fundraising to buy a house in Oakland and turn it into the Disability Justice Culture Club, co-authoring Bernie Sanders’s disability justice platform, working on the documentary Crip Camp and her first book. The future, Piepzna-Samarasinha knows, will include deaths, and we need to carve out space to mourn.
The Future Is Disabled is a list-heavy book, not least because every single descriptor of identity common to disabled lives (fat, queer, poor, femme, Black, Indigenous, mad, beloved) deserves enumeration. They remind us of all that disability justice activists achieved amid the destruction of the pandemic: mask giveaways, mutual aid how-tos, skill shares on making DIY air purifiers, saving the ADA (again), not to mention arguing for their own lives (again) against glass-half-full eugenicists who were relieved when those who died of Covid were mostly elderly and disabled. But when they kvell at the successes of activists who gave out 80,000 free masks during California wildfires in 2018, for instance, or at Milbern buying the Oakland home with “$30,000 worth of twenty-dollar bills sent in on the first five days of the month from disabled community across the world,” I wished to know more about how these campaigns came to be and how they succeeded. Though highly specific, it all still seems a bit like magic, like a sprinkling of rosewater will do the trick.
In their book, Piepzna-Samarasinha uses identity first language (disabled person) rather than the person first language (person with disabilities) that has become best practice in many governmental and nonprofit circles. “I am a disabled person’s disabled person,” Piepzna-Samarasinha admits. “Almost all of my close kin are disabled, sick, neurodivergent, Deaf, or Mad. I love us the best. I think most abled and normal people are really fucking boring.” When I read this, I thought of how delighted I was when most of my friends were eligible to get vaccines right away because they were all sick, fat, and/or working in service. Surplus and surplus-to-be, as we all are. It can be a challenge to get working people to recognize themselves as workers, let alone as surplus-to-be, one workplace accident away from a burden to society. It’s equally daunting to get an “able bodied” person to see themselves as a potentially disabled person. But the point isn’t that everyone is potentially disabled, but that everyone is currently vulnerable under capitalism, which creates false divisions between the sick and the healthy, the disabled and the able bodied, as if we weren’t all just bodies that do what they’re supposed to do — break down.
If you can resist bitterness — and it is very hard to do so, since sickness itself is often not as bad as the immiseration of health care under capitalism — illness affords a marrow-deep understanding of solidarity. Both of these books argue that our future survival depends on thinking about disabled lives because they are all our lives. We are all vulnerable. They are both invested in bell hooks’s metaphor of moving the margins to the center not merely to celebrate the margins, but because the center is slowly emptying out.
Reading Health Communism and The Future Is Disabled, I kept thinking of another book, a novel: Patricia Lockwood’s No One Is Talking About This. When it was published in early 2021, it was a celebrated entrant into the field of “internet novels”; and indeed, the title refers to a Twitter in-joke about the breathlessly earnest armchair social justice warrior who takes to social media to declare that no one is paying attention to the topic they think they’re the first to observe (and they want credit for that). But I think the real thing no one was talking about with regards to No One Is Talking About This is disability.
The extremely online first half of the novel gives way to the “real world” of the second, when the narrator’s sister experiences complications in her pregnancy. The fetus is diagnosed in utero with Proteus Syndrome, a rare disorder that causes the overgrowth of skin, bones, and tissue. Even though both the fetus and mother’s health are in danger, Ohio law and the Catholic hospital won’t permit abortion. The child, whose head grows disproportionately large for its body, lives long enough for her family to love her unconditionally. Her life isn’t a catalyst to call the narrator back to “real life,” away from the silliness of the internet; if anything, the silliness of the internet allows some lightness into the urgency of the NICU. At one point, the narrator wonders if the baby is an American because “this was the country that steadfastly refused to care for her.” I found Lockwood’s way of telling the story striking, because it was so true to how I had experienced a potentially deadly illness. It’s simply a before and an after, before encountering the potentials of a body, and after learning its limits.
As I write this essay, my city, state, and federal government want me to get over the pandemic and get on with normalcy. As I look at a subway poster that cheerily advises, “You do you!” when it comes to masking, I can’t help but suspect we’re living through a campaign to normalize mass death, sickness, and pain, and, in the process, to keep us from demanding our rights. We’re headed that way with climate change. According to a report from the Disability Inclusive Climate Action Research Program at McGill University and the International Disability Alliance, “states are neglecting their obligations to respect, protect, and fulfil the rights of persons with disabilities in their responses to the climate crisis,” and only 35 of 192 state parties to the Paris Agreement refer to disability in their commitments to address climate change. Disability is the ultimate “no one is talking about this.”
In real life, able-bodied people (who don’t think of themselves that way) walk around, encounter disability in themselves or someone they love, and their world is permanently different. Lockwood herself encountered disability in the form of long Covid, as she detailed in her 2020 essay, “Insane after coronavirus?” The person who encounters disability isn’t changed because of some poisonously saccharine narrative about disabled people showing abled people that life is worth living. But because to encounter disability reveals the future we already inhabit.
Natalie Adler is a writer, teacher, and editor at Lux. She is an Emerging Writer Fellow at the Center for Fiction, where she is working on a novel.
Illustrations by Chloe Scheffe. Original photograph courtesy of Olena Sergienko / Unsplash