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Breath & Shadow

Winter 2022 - Vol. 19, Issue 1

"The Body As Disposable"

written by

Hannah Soyer

And so, in some rivers, the great salmon run–scaly bodies returning from the ocean to gravel beds to mate and lay eggs, after which they will die. But the rivers don’t teem with wild salmon the way they used to, their numbers dwindling from overharvesting and habitat destruction, in the rivers and the oceans. It’s not that there aren’t any wild salmon anymore, it’s that our greed and complacency as humans has made them nearly exotic. This is, please understand, not a metaphor.

On a FaceTime date with O., nearly a year ago now, she tells me about the research she has started to do while revising her grad school thesis, and how it has been shown that mere exposure to people who are different from us can lead to increased levels of acceptance of these people and these differences. “Just think how applicable this is to right now,” she tells me excitedly, in reference to the shelter in place orders and work being moved to remote in lieu of the pandemic. “The sheltering in place is going to lead to less exposure of diverse people, which will then in turn impact people’s perceptions and acceptance of them.”

“Yes,” I say, “but people still need to be staying home,” to which she responds with the exhaled “I know, Hannah, I know.”

Ugly Laws, 2021: A resurgence of the ordinances imposed throughout various U.S. cities that made it illegal for “unsightly” individuals (“diseased, maimed, mutilated, or deformed,” as stated in an 1867 ordinance in San Francisco) to be seen in public, ordinances which were not repealed in some cities until 1974, except now, these are never cemented into law, only permeate through our society, moving from one group of people en masse to the next, its own contagion.

It’s a sticky thing, now–we go out in public and aren’t punished, exactly, except with the possible contraction of a virus that can kill us. So we stay inside, and the longer we stay inside, the farther we’re removed from public consciousness. I wasn’t willing to risk exposure to a virus that would likely kill me through a kiss, which meant I wasn’t willing to risk exposure to a virus that would likely kill me through physical intimacy, which meant, really, that I wasn’t willing to risk my life. Never would I have predicted how my own desire to survive––how the disability community’s desire to survive––would be weaponized against us.

In Utah, in October 2020, hospitals prepare to ration care as COVID-19 cases surge. Translation: In Utah, in October, hospitals prepare to say “your life isn’t valuable enough as someone with your type of body to allow you admittance to our beds.” Under Utah’s rationing criteria, patients in the ICU whose health is continuing to decline would get removed from the hospital and thus removed from care first. This could, then, theoretically include me. If there are cases where the condition of two patients seem on equal footing, the younger patient would get to stay, because, as The Salt Lake Tribune reports, “older patients are more likely to die.”  This could, then, theoretically include my grandparents.

When I feel up to it, which really means when I can’t ignore the urge any longer, I write Instagram and Facebook posts trying to make sense of the continual disregard of disabled people’s lives, of my friends’ lives, of my life. I learn, in these moments, that a like on social media, even a comment of support, does not equal true understanding, as I continue to see friends and family members posting about parties, about weddings, about bars, about football games.

In Iowa, 42% of those who have died from COVID as of January 2021 were residents of nursing homes such as the Iowa Veterans Home. This isn’t confined to Iowa: It’s reported nationwide that COVID deaths disproportionately occur in long term care facilities, something which all experts agree is a crime. The implication of this, though, that those living in long term care facilities are already essentially quarantined, and thus that the virus is being brought in by staff and visitors, isn’t something the news talks about, although it’s a realization that stirs a cauldron of grief and rage inside me. When I write a Facebook post about this, someone comments that we can’t expect people to stay in their bubbles outside of work, and I’m left thinking, but can’t we? Can’t we and shouldn’t we expect more from people when there are literal lives on the line?

After all, there's a difference between individuals who work in long care term facilities needing to work multiple jobs as these jobs pay very low (as discussed in coverage of this) and being exposed this way, versus attending large gatherings, not wearing masks when seeing new people or going out to bars and restaurants and parties and football games. When Iowa begins to vaccinate healthcare workers, including those who work in long term care facilities, more than 40% of workers at the Iowa Veteran’s Home refuse to be vaccinated.

In the fall, my dad’s brother calls to ask if he can drop off wild cod, salmon, and halibut he caught on a recent fishing trip to Alaska, on his way to a football game in Ames, a town 30 miles north of us, which happens to be a COVID hotspot. My uncle and his family live three hours east of us, are staunchly Catholic, and voted for Trump in 2016. Now, four years later, they have changed. “We need to get the cheetoh out,” my uncle tells my dad over the phone, and I wonder, again, about the contradictions living within us all.

Disability rights lawyer, activist, and writer Harriet McBryde Johnson tells of her experience with outwardly polite eugenicist Peter Singer in her essay, “Unspeakable Conversations,” an essay I have read countless times. Singer, a renowned moral philosopher perhaps most famous for his progressive ideas on animal liberation, believes strongly that disabled babies should not be born, and that we should be allowed to kill disabled babies at birth. The unspeakable conversation, then, is that which she has at Princeton University, with Singer and his class. She is confounded by the way he treats her like a human being and like an adult–something she is not used to from the majority of people she interacts with as a visibly disabled, wheelchair user.

Johnson wrestles with Singer’s behavior alongside the knowledge that he believes she should have been killed at birth, and by the end, reaches this conclusion: “If I define Singer’s kind of disability prejudice as an ultimate evil, and him as a monster, then I must so define all who believe disabled lives are inherently worse off or that a life without a certain kind of consciousness lacks value.” And, Johnson understands, this definition reaches to many people she interacts with daily, including some of her family members and many of her nondisabled friends.

I used to be able to see this conclusion as a product of Johnson’s self-described Southern niceness (which is, of course, a loaded term)–to not view Singer as a monster, surely, is naive. But my reality has changed, and with it, my perspective: Johnson’s ending is not naive, it is what she has to do to survive. If she were to assign Peter Singer to this category of monster, she’d also have to relegate people in her life to this category, something she is not able to do, not because she doesn’t want to, but because she relies on others to keep her alive–as we all do, but as is especially apparent in the disability community. I need more than physical assistance to keep me alive, I need people who care about me and my community, and I need the existence of hope. I can’t live in a world surrounded by people I believe are monsters, and this has never been more clear to me than now, in the middle of a pandemic.

How do you do it? I text one of my friends, Jess, who lives in Canada and has an undiagnosed form of muscular dystrophy, who is also extremely high risk due to compromised lungs. How do you continue relationships with people who keep showing that they don’t care?

Oh friend, I know, she writes back. It’s so hard.

I can’t just cut people out of my life. I can’t do that.

Oh, I can’t either. I’ve just had to distance myself from people for awhile.

But this is also hard for me, because I don’t like creating boundaries without communicating them first. The battle to hold space in my mind for people I love who are participating in activities that put my community at risk is exhausting, but I don’t know, yet, any other way.

Until. A year into the pandemic, a friend tells me she is regularly attending large parties with (clearly) unmasked individuals, and, while I sit in my childhood bedroom and cry silent, angry tears at this new wound, I experience something akin to what Feminist theorist Sara Ahmed calls the “feminist snap,” when the smiling and nodding and pretending not to be bothered by something will no longer do.

This is a “Crip snap,” then: a year into the pandemic, and I am no longer willing to compromise my need for friends who stick up for me and my community when it matters most. When I realize this, I am sitting in front of my bedroom window, looking out at Iowa’s incessant snow of that winter. It is clear, then, as clear as the heaps upon heaps of whiteness covering our neighborhood: You cannot love me and care about me and claim to support me while also participating in activities which have clearly been shown to spread a virus that is killing people like me. For the past year, I had witnessed people simply looking the other way, and I am suddenly refusing to accept this anymore.

I realize, then, that if I let this slide in my friendships with people who do not view themselves as high risk, I am not only doing a disservice to the authenticity of that relationship, but I am also not doing right by my other disabled and high risk friends who are in the same position as I am. I know this same conclusion doesn’t feel right for everyone, or even that everyone in my position is able to do this–asking for accountability from someone can be fraught and complicated if the person you are asking accountability from is someone you rely on to keep you alive. But at this point, I know no other way forward.

“I’m so sick of it,” I sobbed to my mom that night. “I’m just so, so sick of it.” As these words leave my mouth I see Jo March pacing in the attic, crying to her mother, all on the screen of my grandma’s TV as we watched the 2019 Little Women. “I’m so sick of people saying love is all a woman is meant for. I’m so sick of it,” Jo says to her mom through gritted teeth, her face wet with tears. She takes a deep, shuddering breath then. “But I’m so– I’m so lonely.” In Jo I see someone who is trapped within a system while simultaneously trying to live within it with the only tools that have been provided to her. Jo knows the system is broken. Jo sees and feels and writes the brokenness, just as she sees and feels and writes her way into survival.

After the breakup, the image of O. kissing another girl–a girl whose legs wrap around O. in a way mine never could, a kiss immortalized on Instagram and Facebook–sears itself into my mind, and I’m left wondering what I can’t commit to anything or anyone right now means. And then, also, in June of 2020 in The New York Times Magazine: “Is It OK to Dump Him Because of His Medical Condition?”–an advice column, can you believe it? (you can’t, but I can). And although the columnist responded that it’s decidedly not okay to do this, the presence of this question still broke me.

In the nights following the photo and the advice column, I sink into a darkness so complete–this is a darkness that steals light from everything in its reach, not a darkness that is beautiful–that I begin to see myself through the very worst of what the pandemic has laid bare about our society: I’m not worthy, my life doesn’t matter, self-harm isn’t really such a bad idea because who I am as a disabled woman isn’t a way of being that the world actually cares about.

Of course the deep well of depression I fell into was not created solely by the breakup or even the way the breakup played out; yes, it hurt, but I had been through such things before, and although they left me severely depressed and wanting to crawl out of my own skin, I hadn’t thought of self-harming or even flirted with suicidal thoughts for years. My reality had changed, though. This breakup happened within the context of a pandemic that left some people merely mourning the loss of travel plans while others drafted their wills. What I kept coming back to, what I held onto like a branch in the river to keep myself from drowning, what saved me: at the end of the day I wanted to survive by not contracting COVID, and this was a good thing, wanting to live was a good thing.

Like Harriet McBryde Johnson, I am still unable to extend the definition of monster to those in my life who see disability as lacking value, because, like disabled Mestiza writer Naomi Ortiz says in her book Sustaining Spirit, “I need to believe that change is possible,” even if I don’t witness it. What I can do, though, is no longer pour energy into relationships that I feel silenced in. And in this action, too, I am honoring my desire to live.

Hannah Soyer (she/her) is a queer disabled writer born and living in the Midwest. She is the founder of This Body is Worthy, a project aimed at celebrating bodies outside of mainstream societal ideals, and Words of Reclamation, a space for disabled writers. She is the editor of The Ending Hasn’t Happened Yet, an anthology of poetry from disabled, chronically ill, and/or neurodivergent writers forthcoming from Sable Books, and her work has appeared in places such as The Rumpus, Disability Visibility Project, and Entropy. Hannah also happens to be a cat and chocolate enthusiast.

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