The Best American Magazine Writing 2020

by Sid Holt

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  Now that I spend more time around a small child, I understand, acutely, something I only intellectually knew to be true before: Babies put everything in their mouths. They want to taste the world, to understand it through all their senses, even when those things are small—choking hazards!—or dangerous in other ways. They are allergens Baby should not eat, they are sharp, they are poisonous.

  Growing up on the floor of a print shop, crawling and then toddling my way through the maze of presses and type cases, past the giant paper cutter I was forbidden to even think about, let alone touch, there were many, many things to grasp in tiny chubby fingers, to put into a curious mouth. There were wooden blocks satisfying to gnaw on and paper to tear up, empty foil rolls to turn into spyglasses, and lots, and lots, of lead type.

  Lead ornaments in a myriad of shapes and sizes, lead slugs, the alphabet writ hundreds of ways across a slew of fonts, slender eight-point periods and chunky eighteen-point Gs. I spent the early years of my life playing with poison and against all odds did not experience developmental delays, vision loss, tremors, numbness in my extremities.

  My lead levels were never tested as a child, but I cannot imagine they were in a healthy range.

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  I don’t remember going to the doctor much as a child, either.

  “Sorry, we’re not accepting Medicaid patients” was a familiar refrain, and the doctors that did have time for us worked quickly, with limited time for answering questions or listening to hypotheticals and what-ifs. It’s unlikely a doctor ever asked if I was exposed to anything hazardous, and if they had, I’m not sure “lead” would have even occurred to my father. It was such a ubiquitous part of my world.

  No one ever stopped to wonder if I couldn’t do math because something was wrong, assuming instead that I was just lazy; anyway, if someone needed a specialist, it meant going to the City four hours away, and who had a reliable car and that kind of time? Certainly not a single dad tending bar across the street from the main gates of the Mill, the town’s largest employer.

  In our quiet little town, there was a cancer cluster among people who used to work at the Mill, but I didn’t understand it as a disease of place; as a child, I simply understood that this was what happened, that you gave up your life to Georgia-Pacific and it spat you out, sick and trembling. We were too poor and too powerless to fight it.

  Years later, I would learn about environmental racism and the children of Flint, of Kettleman City, of military bases crisscrossing the United States. I learned about brownfields and coal ash pits and petrochemical plants belching pollution, chemical spills and oil pipelines, and all the things that blanket communities in insidious evil. Those communities are too poor—an experience acutely familiar to me—but also too Brown and Black, to fight back, even when perpetrators know that what they are doing is wrong, even after they see clusters of miscarriages and children born with congenital disabilities, because it is cheaper for them to keep dumping poison than it is for them to do the right thing, or so they think.

  Environmental racism is a deep, grievous harm that echoes for generations through communities of color, and one of the ways it does so is at the cellular level, intervening as one cell becomes two, four, eight. Sometimes those cells peter out and die, or they grow for a time but fail to develop into a baby, become instead a story of heartbreak and blood. And sometimes those cells become children. Children born with neurological, developmental, and intellectual disabilities. Children born with limb differences, cleft palates, ticking time bombs that only become apparent later when they want to have children of their own. Children about whom words like “tragedy” are spoken while no one moves to help their community—we should prevent these disabilities, society says, not understanding that the disability is the consequence of the wrong, not the wrong itself.

  It is possible to be privileged on one axis—to benefit from whiteness and all it carries—while lacking privilege on another, to experience the oppression of disablism and all it burdens us with, to be poor and marginalized because people believe we are worthless. Environmental racism—caring little for the communities of color that spring up around military bases to supply their needs—affected my white classmate as collateral damage. The cancer cluster at the Mill sickened white working-class people. Not all sick and disabled people become so because of environmental exposures, of course, and we whites have access to more things than our comrades of color ever will, a stacked injustice that must be confronted.

  Talking about how environmental disparities can contribute to disability, though I may never fully know if they caused any of my impairments, becomes complicated as a disabled person who is proud and confident in my identity, surrounded by other disabled people who feel similarly about our bodies and lives—though not all disabled people feel this way. It’s hard to say “this disability and the things that follow from it are a sign of injustice” in a way that does not make it sound as though I think the disability itself is a wrongness.

  Writing about the thorny subject of acknowledging when disability happens because something has gone wrong in a society in the context of anti-vaccination sentiments, disabled writer and editor Elsa Sjunneson-Henry said: “Threading the needle of not hating myself or my disability but finding the source of my disability utterly reprehensible has been a difficult one … I don’t believe that anyone should have to live a disabled life—let alone lose a baby—because of bad science and a wrongheaded disbelief in vaccination.”

  There’s nothing wrong with being disabled. But there can be something wrong with the way you become disabled, and to pretend otherwise is to perpetuate injustice. Flint still doesn’t have clean water and children are paying a high price for that. Flint is not the only community in the United States where children are drinking lead, playing in PCBs, choking on pollution. Most of those communities are low-income and communities of color are heavily represented among them; my community is different now not because people thought better of their misdeeds, but because the Mill closed and it became a playground for rich white people who don’t like the thought of their poodles playing in dioxins.

  All of these things are wrong, and the disabilities, the miscarriages, the stillbirths, are symptoms of those things. The lack of access to health care to help people affected by pollution lead their best lives is wrong. The failure to include those students in classrooms is wrong. The disproportionate rates of sexual assault, homelessness, poverty, housing and employment discrimination, abuse, and other harms these children will experience over the course of their lives because they are disabled is wrong.

  I want those children to grow up knowing disability rights, and disability justice, I want them to grow up affirmed and loved and supported, because they are valued, beautiful people with the world in front of them. And I will keep fighting—as they are—to end the injustice that’s ravaging their communities. Not because I think disability is bad, but because I think poisoning communities and perpetuating intergenerational inequality and injustice are bad.

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  Years after making a poisonous playground my home, I started to develop some of the symptoms associated with lead poisoning—the numbness, tremors, forgetfulness, irritability. By then, my lead levels were normal, and the cause of my problems remains mysterious, a common experience for disabled people.

  Feeling a tension between opposing inequality that expresses itself in the form of disability and experiencing pride in being part of the disability community is also a common sensation for many of us. If we cannot sit in our discomfort, though, we cannot hope to grapple with it authentically, and will fail to make space for the complexity of disabled identities in a disablist world. We will also be failing those who count on us to advocate with them—the children of Flint, the survivors of gun violence, all those with disabilities acquired through cruelty and horror and neglect. The experience of acquired disability can be tremendously isolating, more so when the root causes of the disabi
lity make people uncomfortable, but no one should be alone in this troubled world of ours.

  The Ugly Beautiful and Other Failings of Disability Representation

  A row of vultures showed up this morning on the fence line to spread their wings, stretching them out in the sun and peering curiously at me when I stepped out onto the porch. Vultures always remind me of theater people, with their black turtlenecks and dramatics.

  I have a certain affinity for vultures; we are both called ugly sometimes and people dismiss our work. People use the word “vulture” like an insult but all I see is a majestic, glorious creature that cleans up the things people don’t want to deal with, soaring the thermals on broad wings, constantly searching for the next project. Vultures gather with equanimity around roadkill of all species, the losers of fights, those who slipped away to die in peace and quiet.

  Some say vultures are scavengers preying over the dead; I say someone has to lock up after life has left the party.

  Finding beauty, grace, gloriousness in things others find ugly or troubling is a bit of a specialty for some of us, I think. Those who spend their lives in bodies others deem unworthy grow accustomed to building our own self-worth. And we grow accustomed to building each other up. Nondisabled people often seem to believe that bodies like theirs are the pinnacle of accomplishment, that the work of finding beauty is about finding ways to compare ourselves to them, that the greatest goal of all disabled people should be to pass or come close to it. Our bodies should be buttoned up and hidden away from sight when it is impossible to “fix” them to a nondisabled ideal, whether that ideal is a sane mind or mobility.

  It is deeply troubling for able-bodied people to learn that, at least for some of us, this is not the case—that we find beauty and pride in ourselves, not in how we can most align with what nondisabled people think human bodies and minds should look like. That rather than hide or minimize disability, some of us want to accentuate it. We want to carry sparkly canes, to sew custom pouches for our medical supplies, to wear crop tops with our ostomy bags showing, to show our facial differences.

  Often, though, this kind of reclamation is associated specifically with glamour and conventional beauty; Lauren Wasser, the model with the golden legs, or Mama Cax, a fierce Haitian model with cheekbones that could cut glass and a collection of stunning, bold prosthetic limbs, often in bright patterns and colors, sometimes minimalist and fierce, other times elaborate and lacy. Any one of them costs more than most amputees can afford.

  Being pretty is expensive regardless of disability status, but the disability tax—the fact that everything is inexplicably more expensive when it involves disability, whether purpose-built or easily modified for our use, on top of our higher poverty rate and lower lifetime earnings, turning a fashion splurge into little more than a wistful sigh—makes it much more out of reach for disabled people to chase a conventionally attractive dream. For those who want to be “fixed” or blend in, it is well-nigh impossible, not necessarily because of the way bodies and medicine work, but because of the sheer cost, most of which is not shouldered by insurance companies and Medicaid, while remaining well beyond the financial means of most disabled people. And for those who want to stand out, the costs of prettiness, power, fierceness, beauty, can also be well beyond reach; limbs that cost tens of thousands of dollars, innovative mobility devices that one can only imagine using, custom-fit gowns that drape flawlessly on nonnormative bodies. Some manage to find their way through thrift and creativity and washi tape to their own unusual, rebellious beauty, but not everyone has that capacity. For the rest of us, sometimes pride in ugliness feels like a question: Are we making do with what we have, or genuinely turning our backs on societal expectations?

  Celebrating disability hints at a future where a cane can be both fashion implement and medical device, not just one or the other. Where mobility equipment doesn’t have to come only in that dull medical blue color that speaks of depression and long, cold nights in dull, grim places. Where prosthetics can offer form and function in alignment with the wishes of the wearer, rather than the impositions of society. Where the things that keep us alive are part of our beauty rather than things to be politely ignored, where we can say “nice wheelchair” and mean it. Where the desire for beauty and choice is honored by the entities that hold the purse strings; no longer will we be assigned the basic, dull, cheap “only option.”

  But we must not forget that there is beauty and power in the ordinary. I have a deep love and affection for the beige and “medical blue,” the drugstore cane tarted up with some patterned duct tape, the ratty powerchair covered in anarchist stickers that Medicaid refuses to replace. These things are beautiful, and living in them with confidence and defiance is beautiful. I love the fat femme in ill-fitting thrift store clothes who rides her battered scooter with pride, blazing through the streets, refusing to remain hidden. She doesn’t look like the glossy magazine features disabled people get thrown occasionally as consolation prizes and this is why I love her.

  I love ugly beauty, and what the bearers of it say about how we conceptualize beauty. And I am troubled by the forms of disabled beauty we choose to elevate, not only collectively as a society in “inspirational” coverage of disabled people existing in the world, but as a disability community, for the disability community falls into the same traps our nondisabled counterparts do. We seek out the pretty and shiny and glossy, turn away from the ordinary, even when we do not need to; we are swift to praise any disability representation in media without noting that it often falls in line with nondisabled and racialized expectations of beauty, as though criticizing the depiction also attacks the subject. We applaud photogenic disabled people who grow huge social media followings and politely sidestep the ugly beautiful. Be daring, but not too daring. Don’t scare the horses. There are exceptions, of course. There are always exceptions. But that’s what makes them exceptional.

  We do not talk enough about how money and class weave through the way people are able to present themselves, that some can buy good health care and power and prettiness while others spend hours on the phone every week pleading for prior authorizations and begging to replace ancient wheelchairs, asking for replacements for equipment that is battered, old, held together with duct tape, hair brittle and dull with stress. We see and recognize this financial injustice as a force in our lives, but not necessarily as an influence on our presentation.

  I think of Aimee Mullins, a model with the stunningly long legs, blonde hair, and good looks that people think should come with modeling, how she embodies the nondisabled ideal, until she takes her legs off. Then she is an amputee, frightening, other, strange. Stranger still are the legs she can choose to put on: Hand-carved custom Alexander McQueen wooden legs, legs that look like jellyfish floating through the water, cheetah legs for running hard and fast. Legs that mark her as different.

  Some might look at women like Mullins and experience a sense of pity, thinking they’ll spend their lives pursuing nondisabled perfection and always fail. I look at her and see power, a disabled person who has taken control of her body’s destiny, who challenges what destiny should look like. Her prosthetic limbs are not pale imitations of their nondisabled counterparts, she is not trying to pass as nondisabled, she is instead using them as an extension of both her body and her aesthetic. She has achieved something nondisabled people cannot; her stunningly engineered sports legs confer tremendous advantage, and she can casually change her height with a simple equipment switchover. A friend sees her adjustable height as an unfair advantage.

  She is unapologetically disabled, though sometimes her public comments reflect deeply internalized disablism, has chosen to accentuate her disability and the mobility devices she chooses to use, has turned disability into art, social commentary, statement. She is beauty. She is power. To see her stride across a stage is to feel a swell of something complicated and almost overwhelming. But she is able to live that way because she has access to privilege, power, money. Bec
ause she is white. Because she is able to make her disability relatable, less scary, for audiences, smiling frequently and making jokes. She is approachable.

  While it’s thrilling to see a bespoke wheelchair on the runway or an attractive and stylish disabled person showing off a robotic arm on a street fashion blog, I do not want us to forget our siblings with less power, privilege, and access. Visibility may elevate the disability community, but it can come at a cost when it is not thoughtful visibility, when it suggests that pretty people can engage in radical embodiment while the rest of us slobs are stuck begging for a seat at the table. Diversity cannot be limited to hashtags that rarely circulate beyond the disability community when we have the whole wide world laid out before us, tantalizing, so close, yet leaving us feeling like we will never touch the sky.

  We are vultures soaring aloft, living in precision bodies that are our own, even if they seem grotesque to you, from razor-sharp beaks to naked necks, ragged feathers and gnarled feet. We are as vital and necessary as the swans and peacocks of the world.

  We are taught to be humiliated, ashamed of using medical devices. I think of the latest high-profile pretty disability spread in a major magazine, Selma Blair’s recent fashion feature, something widely praised in the disability community as a profound moment for visibility. Was it, though? Or was it just a prettification of disability, a celebration of someone with access to considerable resources at the cost of more diverse disability visibility? Or was it a pivotal moment, a Hollywood star flaunting her cane like the fashion accessory and mobility aid and tool of liberation that it is to force nondisabled people to rethink disability identity? Are we so hungry for any representation that we are afraid to demand the beautiful ugly?

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