We speak of the radicalization of disabled people, but so few have that experience. So many never even know us.
Disability feminism—a branch of feminist work with disability at its heart, rooted in an understanding of embodiment and culture that centers disabled people—is like a vast redwood joist. It is buried beneath the floor, holding up the building—strong with the tight grain of old growth, bearing up unwavering under compression. No earthquake can shake it, no flood can destroy it, fire can but singe it. Everything thrown at it only makes it more powerful. It has had to carve out something for itself.
Most nondisabled people never think about it. Why would they? They don’t need it. It’s just there, something they aren’t even aware of, even though every time they take a step it groans under their feet. They have no interest in peeling back the floor to see what lies beneath; it’s someone else’s problem.
Until suddenly they do need it, very much. The floorboards are cracking and splintering and they’re flailing for something to hold on to so they don’t sink beneath the earth, and there it is. They land on the warm, reassuring breadth of something someone else cut and finished for them. Someone else oiled it before lovingly hauling it into place. Someone else did the work for them, and they cannot be grateful because they do not see it.
Over the last few years, and especially since the pandemic began, issues of disability—particularly acquired disability—have been brought to the forefront. Some coronavirus patients are developing serious, lasting postviral symptoms, collectively known as “long Covid”: fatigue, headaches, brain fog, muscle weakness, respiratory problems, postural orthostatic hypotension, kidney damage, and numerous other complications. Covid cannot be understood as a set of binary and opposing outcomes—dead/not dead—but as a serious disease that may also lead to long-term disability.
People with long Covid have lost their floorboards, and many are very angry about it. They’re discovering a whole universe that lies just beneath their feet, thrust into a system that, at every turn, is predicated to make things more difficult for disabled people and to suppress disability life and culture. Acquired disability, even temporary, can be a huge traumatic adjustment, made harder by lack of access to useful resources. The complicated mix of fear and loss, mourning and frustration, is often amplified by rage at the handling of the pandemic overall. Have they lost the ability to do things they love, some wonder, because the government acted too slowly, and because anti-science crusaders resolutely refused to comply with public health recommendations? Will they spend the rest of their lives fighting insurance companies and struggling for enough breath to move from bed to toilet and back again?
Many, even as they lie splayed upon the beam, still don’t understand what it is doing for them. If they weren’t previously disabled, perhaps they haven’t yet reached out their fingers to touch the disability community—a world they may not even view themselves as adjacent to, let alone a part of.
For a good chunk of my life, I didn’t see myself as a feminist.
It wasn’t because I wanted to be just one of the guys, or because I had bought into stereotypes about the movement. It wasn’t because I was under the mistaken impression that things are mostly equal and attempts at equity are just special treatment. It was because I simply didn’t see myself in the mainstream/white feminist movement—one that is sometimes actively hostile to me and people who look like me. Prominent disabled mainstream/white feminists exist, but many don’t engage with disability in their work, or do so in passing, or accept a medicalized framework when discussing disability. More commonly, disability is presented in the context of a burden, with nondisabled parents and caregivers often talking about disabled children and family members, telling their stories and defining their experiences for them.
When called upon to be disability-inclusive, mainstream/white feminism has been historically indifferent or cruel to disabled people calling for a place in the movement, arguing that disability and chronic illness are not feminist issues. The prospect of a disabled fetus is used to argue for the “justified” abortion. Requests for accessibility information at conferences and marches are met with anger or “no one thought about it” or “it’s too expensive.” An event about disability and parenting features exclusively nondisabled parents of disabled children. Eugenic feminism played a prominent role in the women’s suffrage and early birth control movements.
A high-profile feminist once told me, in response to my calls for disability inclusion, to “go make it yourself, then.” There is no meaningful dialogue here, no meeting of minds. Some hold the floors up, and others walk on them. That hostility may last until the floorboards crumble, and then suddenly many of those same white women believe they are experts in disability feminism—a complex praxis developed over decades, through difficult work and advocacy that included people who weren’t even feminists, many of whom were Black and Brown. Disability feminism is not, to be clear, the only disability movement, nor is it the only movement to explicitly explore gender and embodiment, but among many approaches to disability-movement work, it may be the most accessible to nondisabled people—should they choose to engage.
Disability feminism has done so much of the work people think of as “feminist” and has been the target of so much appropriation, theft, and silencing, particularly at the intersection of disability feminism and Blackness. Who else but disabled feminists and their accomplices—again, led by activists of color—have long been interrogating and changing the narrative on issues like interdependence, mutual aid, beauty and ugliness, racialized bodies, respectability, and sexual politics? Who else but they are truly radical visionaries challenging the landscape of care work, of autonomy, of freedom? The work of disabled feminists and their associates is lifted, softened, the edges filed off, and repurposed to seem more “palatable” or “achievable”—a phenomenon familiar to all marginalized communities doing hard, unacknowledged work: fat liberationists see their work turned into “body positivity”; anti-carceral activists watch “defund” morph into “reform.” Disabled feminists are too often ignored, save in their own circles; there is no high-profile disability magazine to rival Bitch, Ms., or Wear Your Voice. Disability work becomes academic, floats on Twitter in sprawling threads, or is passed hand to hand like a sacred object.
I still don’t see myself as a feminist; I see myself as an accomplice working in solidarity with disabled feminists.
As long as humans have existed, we have coexisted with disability, and disabled people have had to fight for our rights and our lives.
This is a moment ripe for so much of the literal body of work that is disability feminism, a praxis of rage, power, strength, inclusion, interdependence, softness, viscerality. Yet there is still a deep sense of fear, an intense desire to simply reinvent the work of those who have gone before—an engineered wood beam, laminated piss pine and bolts, will do just as well or better than acknowledging the fact that there might, perhaps, be an incredibly rich and complex way of thinking and being already developed by—as Alice Wong calls them—disabled oracles. Elders who have lived and breathed and worked on disability issues for decades, and those who came before them. Those who rode in Harriet McBryde Johnson’s socks.
People like to pretend disability work began in 1990, with the passage of the Americans with Disabilities Act, when in fact disability work is Harriet Tubman’s brain injury, the intergenerational trauma of Aboriginal Australians taken from their families, Black communities choking on environmental racism, Richard III’s crooked back, the golden eye made for a priestess who lived five thousand years ago, the legacies left by US imperialism. As long as humans have existed, we have coexisted with disability, and disabled people have had to fight for our rights and our lives.
Why has the work of disability feminism and other elements of the disability community’s immense culture of analysis, criticism, and activism been ignored or suppressed? I think you know the answer. Self-determination, to many, is frightening. Self-assurance is repellent. The work of people who know their dignity and worth is alarming. We live in a culture where nondisabled intermediaries tell disabled people they should be grateful to a society that throws them scraps in the midst of abuse, that exceptionalizes them even as it shuns them. Disabled people who break out of these patterns are audacious, and many nondisabled people are uncomfortable with the way they choose to communicate and live. The voices of those most defiant are often kept hidden, a scavenger hunt away; thus, the newly disabled person isn’t introduced to works by disabled people that might expose them to disability culture, but instead to saccharine memoirs and advice from nondisabled people, or to a newly disabled support group that includes no grounding in disability work, led by a nice therapist who reads out platitudes at the beginning of every session.
We speak of the radicalization of disabled people, but so few have that experience. So many never even know us. And yet, we will keep doing the work—uncredited, unacknowledged—because the work must be done.
Now, as long Covid enters the public consciousness and countless people struggle with their entry into a world they didn’t think about before, it is still the work of the disability and chronic-illness community that has shifted social and medical attitudes and fought for antidiscrimination protections, accommodations, rights, and disability justice. While many people—including some newly disabled by Covid—may have grown to adulthood in ignorance of the disability community’s activism, there is no better time than the present to learn our history and join us in the work.
For your sake, newly discharged Covid patient with an oxygen concentrator and a bag of medications. And yours, bicyclist run down in the road by a careless driver, waiting for the ambulance to come while you panic as you realize you cannot feel your legs. And yours, young adult just diagnosed with ADHD. And yours, baby born with achondroplasia. For you, we must keep fighting. That beam keeps on doing its job. It has no other choice.