It’s October, the spookiest time of the year, and also the prime time for a resurgence in harmful stereotypes about disabled people in the media. I love Halloween, and like many people, I’ve been dutifully scaring myself silly this month with new shows like The Haunting of Hill House, and a re-exploration of Stephen King’s back-catalogue. But in nearly all of the terrifying films, books, and TV shows currently dominating our leisure time, it’s impossible to ignore one pervasive trend: the looming spectre of the “Evil Cripple.”

Quite frankly, we disabled people are everywhere right now, but not in the way many of us would like. If we’re not wielding chainsaws and going on murderous rampages, then we’re plotting world domination from our wheelchairs and reveling in a variety of gruesome deaths. The recurring tropes of disability = evil and disfigurement = morally bankrupt are stereotypes as old as culture itself, but what exactly is so scary about us? Well, come with me on a spine-tingling trip through history, that begins thousands of years ago, within the creeping mists of time…

Horror films and books play heavily on the idea that religious texts and arcane tomes are gateways to magic and evil, but the idea of disability as punishment is one found in almost all religious stories. In these parables, sinners are struck down with blindness, leprosy, or paralysis as a punishment for perceived sins, and healing is only offered when they repent and beg for forgiveness. In fact, early Puritan writings suggested that disabled people were innately driven towards evil, and that a child born with a disability was being punished for intrinsic impulses towards immorality.

In folktales and fairytales, too, limping crones lure children to their deaths, and disfigured characters like Rumplestiltskin use their cruelty and cunning to entrap the more moral characters of the story. Often, in these tales, disabled and disfigured people are fueled by jealousy and bitterness, and so turn their hatred onto the pure and blameless members of society. The over-arching message? Disabled people are inherently evil, and as such, we are scary.

Early Puritan writings suggested that disabled people were innately driven towards evil
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Unfortunately, this lazy trope, which positions disability as being caused by, or being the cause of, malicious wrong-doing, is one that repeats itself in popular culture, and feeds into the false idea that disability is inherently a bad thing. In Stephen King’s The Green Mile, callous jailer Percy is punished for his cruelty to the inmates by being rendered catatonic, while the sweet-hearted wife of the prison’s chief warden is saved from her brain tumor because, we’re meant to infer, she deserves to be.

In the Texas Chainsaw Massacre, Leatherface is a disfigured character who tortures people to death and tries to wear their faces, because of course, if you have a facial disfigurement you must be filled with self-loathing, as well as a burning hatred for those who don’t. We know that Freddy Krueger is evil because he’s disfigured; the Phantom of the Opera becomes a villain because he can’t possibly reveal his scars; and Jason Voorhees, with his disfigurement hidden behind a mask, demands your attention with murder.

But it isn’t just physical disabilities that history and, by extension, the entertainment industry, consider frightening.

One of the most famous horror tropes is the mentally ill and therefore murderous antagonist. Often a serial killer, like Hannibal Lecter, or occasionally possessed by demons, like Emily Rose, if there’s one things the horror genre has taught us, it’s that mentally ill people are to be feared. But there’s a particularly sad irony in this stereotype, since throughout history, mentally ill men and women have been the ones most frequently harmed by society.

Take Bethlem Hospital, better known as Bedlam Asylum, for instance. Most of us know that Bedlam was a terrible place, where people were locked away in squalor, without treatment, and routinely abused by their gaolers. What many people don’t realize, however, is that before Bedlam, locking away patients with mental illness was considered to be a humane way of isolating them from their abled peers, for the very simple reason that mental illness was thought to be contagious.

As a result, many people suffering from mental health problems were subject to torture or murder, as it was feared they might infect others. Isolation was considered to be a more compassionate alternative to a variety of so-called therapies, from blood-letting, to starvation diets, to trepanning, an ancient practice in which a portion of the skull is removed. Yet despite this, the horror genre is rife with depictions of psychopaths committing mass murder, or people with multiple personalities slaughtering their families.

Perhaps, you might think, that these stereotypes are no big deal. But the fact is that the horror genre is the only genre in which disabled people are regularly represented at all. In 2015, a report by the Media, Diversity, and Social Change Initiative found that of the top 100 movies that year, only 2.4% of disabled characters spoke or had names, despite the fact that 1 in 5 people around the world are disabled.

The entertainment industry, in particular, regularly comes under fire for allowing abled actors to “crip up” and play disabled roles, thereby denying disabled actors the opportunity. The problem has become so bad, that the Ruderman Foundation recently reported that an incredible 95% of disabled characters on television are played by able-bodied actors.

The fact is that the horror genre is the only genre in which disabled people are regularly represented at all.
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Similarly, while most horror films depict mentally ill people as violent, cold-blooded killers, the reality is that they are far more likely to be the victims than the perpetrators of violent crime. The stigma around mental health issues also makes recovery harder, and according to the Mental Health Foundation, nine out of ten people with mental health problems believe the stigma around them has a negative impact on their lives.

While Halloween is a great excuse to terrify ourselves and indulge in dark stories, it’s worth remembering that while horror entertainment frequently depicts disabled people negatively, there’s essentially no other popular media to counter-act these depictions. While there are countless disabled and disfigured people portrayed as killers and villains, we rarely ever get to be the heroes, and frequent negative representation breeds ongoing stigma and prejudice.

Stories of disability as a moral punishment, in particular, feed into the idea that disabled people deserve suffering, or even that the lives of disabled people are nothing but suffering, and so we are either to be pitied or punished. Neither of these things is true, and isn’t it about time we stopped using disabled bodies as a short-cut to cheap scares? The chances are we’re probably not going to murder you or wear your face as a mask, but we are pretty tired of always being the bad guy. Really, the only thing frightening about disability is the archaic attitude the entertainment industry still has towards it – in both its depiction of us, and its refusal to offer us a chance at employment.

CW: Mentions of self harm

I carefully walk up the wooden stairs, gripping the handrail. The scent of jasmine is sweet as I cross over to open the Dutch door. The sound and smell of the studio are overwhelming: the tang of green soap and vaseline, the clattering buzz of the machines. There is art everywhere: watercolors in bold primary colors, books on the counter filled with potential options. As I settle in, the razor flicks over my skin. I watch the fine blonde baby hairs of my arm shaved off, golden motes dancing in the sunlight. “You ready?” the artist asks. I involuntarily clench, but smile. “Born ready, baby.” Then the needle touches my skin and I relax into the pleasurable pain of being tattooed.

I got my first tattoo at 18, much to my parents’ chagrin. I don’t remember when exactly it was that I fell in love with the idea. Growing up in the punk scene, I couldn’t think of a specific person whose inked skin made me suddenly decide my skin needed to look similarly, mostly because everybody’s skin was tattooed. It was exactly what I planned to do the minute I was old enough, because I wanted to. Because I could.

So I drove in my green mini-van to the tattoo studio all my friends went to and spent the morning of my 18th birthday getting tattooed (with a tattoo of such poor quality and miniscule size that I would eventually cover it up entirely). Back then, more than 15 years ago, my tattoos were a declaration of selfhood, a way to decorate my body with things I loved. Back then, the niggling pain in my back was just a minor irritation, probably nothing big, just a discomfort from standing on my feet as I worked as a restaurant hostess. There was no connection between that pain and getting work done at a tattoo studio.

Except the back pain didn’t go away. It got worse. Some days, the pain was so bad that I would have to call in to the restaurant where I worked, gasping as I explained I wouldn’t be coming in that day. I graduated high school and moved away from my hometown to attend the University of Central Florida in Orlando. Days when I couldn’t work were inevitably also days when I couldn’t attend class.

I’d spend hours in bed, splayed out, trying desperately and carefully to not move at all. If I stayed still, I couldn’t feel the lightning bolts of pain shooting from my back into my ribcage, down my legs and into the soles of my feet.

Back then, the niggling pain in my back was just a minor irritation, probably nothing big, just a discomfort from standing on my feet as I worked as a restaurant hostess.
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At some point, the pain in my back relocated. It moved into my ribs, and my hips, and my ankles, and my legs. In desperation, I tried everything: visits to urgent care were followed by the chiropractor, then the acupuncturist. When they had no solutions for me, I added regular doses of ibuprofen to my repertoire. As the pain increased, so did the number of days I spend in bed. The pain was debilitating.

I moved from one specialist to the next. I felt increasingly disconnected from my body. I had never felt isolated from myself before. My body had always been me. After all, isn’t that the way most humans exist? Our bodies are ourselves. There is no separation from body and mind.

Except a natural separation begins to exist when your body stops behaving predictably. The body that I had relied upon for so many years, through karate lessons and long-distance running and college all-nighters, suddenly stopped behaving in a way I could anticipate. I could no longer trust that I would wake up and be able to complete all the tasks I needed to through the course of the day.

Hell, I could no longer trust that I would even be able to crawl out of bed. A creeping dysphoria set in: this is my body, but it is not myself. My body was separate from my existing, and both had to be managed in order to get through the day. As my dysphoria became more apparent, the act of being tattooed started to be less a declaration of selfhood and more about feeling a sense of control over a meatcage spun wildly out of control.

The idea of disability and dysphoria are no strangers to many other disabled humans. Jill Jones, a 34-year-old disabled woman from the San Francisco Bay Area, understands the idea of needing ownership over a body you no longer feel like you control — even though she lives with a disease that prevents her from being tattooed anymore. Her disease, hereditary angioedema type 3, is an incredibly rare, life threatening condition that causes episodes of edema (massive swelling) in various body parts, including the hands, feet, face, intestines, and airway. Without treatment, death occurs in approximately 25% of HAE patients.

“I feel like once I disclose my current diagnosis, artists don’t want to tattoo me,” she explains. “Minor physical trauma can trigger life threatening airway attacks at worst, and at the least localized swelling, bodywide pain and the need for a rescue shot that costs over $11,000.” Despite this, when she can be tattooed, it is a source of relaxation and euphoria for her; she’s even slept through long sessions before.

“Ownership is huge when you have no control over your bodily functions and you don’t know when your body will turn on you, killing you. You develop a fear, and a resentment of your body. It represents your illness and all the pain and loss that follows suit. So when I look at my tattoos it helps me to see me there, separate from the genetics that want me dead.”

After I was finally diagnosed with hypermobile Ehlers-Danlos Syndrome (hEDS), a genetic, degenerative collagen disorder that causes my joints to easily dislocate, I began to reconcile the reality that my symptoms weren’t going to disappear. There is no cure for hEDS. As my understanding of my body evolved, the nature of my tattoos did, too. They started getting bigger, stretching across my entire shoulder and down my arm, or over my hip and across my thigh.

The pain of the actual session started to recede, too. I wasn’t so focused on the painful bite of the needle anymore, or wondering when the session would end. I started to look forward to the distraction of the hurt. It was a hurt I could opt-into, one I could select.

Jaz Joyner, a 27-year-old Black self-defined “womanperson who is a bit genderqueer,” mentioned that same concept of control when discussing her tattoos. After an emergency salpingo-oophorectomy to remove her fallopian tube and ovary, she was diagnosed with polycystic ovary syndrome (PCOS), hypertension, and hyperthyroidism at age 13. An osteoarthritis diagnosis followed at age 18 (with three herniated discs in her back), and a diagnosis of fibromyalgia and tactile allodynia (painful sensation caused by innocuous light touch.) Joyner says that it was the pain from the tactile allodynia that got her into tattoos and body modification.

“I am often in pain or can’t control what my body feels from one day to the next, and that usually makes me feel powerless,” Joyner said. “Tattoos and piercings give me back that control. I pick where and when the pain will happen, and this pain comes with a reward: beautiful art I can keep forever.” In fact, Joyner’s first tattoo was representative of her experience with the medical side of her illness.

As my dysphoria became more apparent, the act of being tattooed started to be less a declaration of selfhood and more about feeling a sense of control over a meatcage spun wildly out of control.
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At some point, I stopped mulling over an idea for months or years before finally committing to it. I started looking at the sessions themselves as a respite from the normal pain of existing within my own body. Being tattooed was still painful, but as Joyner said: at least it was pain I could choose.

Selecting the pain meant it was not only bearable, but almost pleasurable. And, unlike the chronic pain from my rebellious meatcage, this hurt left me with a visible trophy to celebrate. Something about being able to run my fingers over the colorful artwork now permanently emblazoned across my skin felt like I’d come away a winner.

I knew that my reaction was, in part, a response to the associations I’d made with the act of being tattooed and the studios themselves. The positive connection in my brain left me dripping with positive endorphins and adrenaline. In fact, the idea of place attachment is the emotional bond between person and place, and a main concept in environmental psychology. The tattoo studio became an environment of safety for me, a place where I had the power to not only control my pain but shape it into something that felt valuable.

Andrea Lausell, a 25-year-old Latinx woman from Los Angeles, understood the interactions of brain chemistry intimately. “After a tattoo, I feel euphoric,” she said. “I feel in control of my body, and as a result of the pain, [I have] something I love on my body…” Lausell was born with Spina Bifida Lipomyelomeningocele, a birth defect where the spine fails to properly form.

She was diagnosed with Chiari Malformation, a condition where brain tissue extends into the spinal canal, in 2011. Over the course of her lifetime, she’s undergone 12 back operations and a skull decompression to remove a portion of her skull. “After a [medical] procedure, I generally feel drained and traumatized,” she clarified, in opposition to the elation of being tattooed.

In fact, this emotional connection to the experience is likely connected to the neurotransmitters the body releases during the tattoo process. Adrenaline, a hormone and neurotransmitter that plays an integral part to the flight-or-fight response, is one of those transmitters. Interestingly, adrenaline may also serve as a memory enhancer during these experiences, deepening our positive connection and place attachment to the experience.

Other neurotransmitters are also released during the tattooing process, including endorphins, which interact with our brain’s opiate receptors. Endorphins act similarly to morphine to reduce pain, and are released when we are injured. Since the act of being tattooed is hours upon hours of physical injury, needles digging into our skin and leaving ink behind, it’s unsurprising that the body dumps adrenaline and endorphins, affecting the experience.

Gabriel Vidrine, a 38-year-old transmasculine genderqueer human from Chicago, got their first tattoo when they were 18 — long before any of their chronic illness diagnoses. Vidrine lives with asthma, depression and anxiety, chronic migraines, and a subarachnoid cyst (a fluid-filled sac in the tissues surrounding the brain and spinal cord.) They came out as transgender at 35, and have connected their body dysphoria as the main trigger for their anxiety and depression.

“It’s a type of high. The pain itself is a distraction from everything else,” they said.“As a self-harmer, whenever I’d hurt myself, there would be this rush of endorphins, and I’d feel free and light for a day or two (perhaps what most people might consider ‘[feeling] normal). It’s the same with a piercing or a tattoo.”

While everyone who gets tattooed experiences the rush of endorphins and adrenaline, people with chronic illnesses may experience those factors differently. Pain perception can also be influenced in the brain itself: the brain can amplify, decrease, or outright ignore the pain. Additionally, cognitive and emotional factors also determine what happens to the pain signal. If we’re looking for something specific to focus on that isn’t our chronic pain, tattoos serve as an excellent distraction.

While our understanding of pain perception and how various factors influence remains poorly understood even today, the gate control theory of 1956 revolutionized pain research and remains the basis for much of our current understanding. In short, the theory posits that pain messages travel from the site of injury through nerve “gates” in the spinal cord before finally ending up at the brain.

The theory proposes that the activation of nerves which do not transmit pain signals can interfere with signals from pain fibers, thereby inhibiting pain. An easy example? You smack your funny bone on a desk. Then you rub your elbow, trying to stop the pain. The nerve signal produced by rubbing overrides the sharp pain and results in a decreased experience of the sharp funny bone pain.

If we’re looking for something specific to focus on that isn’t our chronic pain, tattoos serve as an excellent distraction.
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Though there isn’t any clinical research out there following up on the idea, it stands to reason that the vibration from the tattoo machine works in the same way that rubbing the smacked elbow does. For a period of time — especially in conjunction with adrenaline, endorphins, and positive place attachment — the body might tune in to the non-pain signals from being tattooed by a heavy machine that’s vibrating, drowning out the constant drone of chronic pain.

Science or not, the reality remains that a whole host of chronically ill humans view body modification as a way to control bodies gone terribly awry. To us, tattoos feel like freedom, like armor, like hope, and release. They’re a way to change a body out of our control, and a way to be gentle with ourselves during times when we’d rather be doing the exact opposite.

Jamie Rose, a 22-year-old nonbinary transgender human from Cardiff, Wales, described it succinctly. “While the tattoo is healing, I definitely have a lot more compassion for my body than I usually do; I think healing an acute wound is a lot easier than living with the day-to-day grind of a chronic illness.” Long after we’ve walked out of the shop, after the endorphins have faded, we’re left with artwork that we need to care for in order to ensure that it remains as beautiful after the fact as it did in the moment.  

“I see my body… as a canvas for something an artist has put hours of work into, that I need to respect and care for,” Rose clarified. “It also makes me feel more cool and confident and in charge of my own physicality, which is something that being disabled can often strip from me.”

Every time we finish a session, I practically skip down the stairs from the studio, carefully cradling my arm, barely feeling the normal hurts from descending a set of steps. I can hardly wait to get home and admire my newest work of art.

When I was in college—an experience I barely survived—a desperate friend gave me a book to read. It was the now-ubiquitous An Unquiet Mind by Kay Redfield Jamison, a memoir of a psychologist’s life with bipolar disorder and how she struggled with diagnosis and treatment. I enjoyed reading about someone who was so very, very much like me.  Jamison’s book is the reason I sought treatment for mental illness. And since becoming a disability activist, and someone who studies disability memoirs, I’ve read thousands of words on message boards that say Jamison’s book, or another psychiatric illness memoir, gave a person the courage to seek help.

The friend who gave me Jamison’s book later told me that his secret motive was for me to have just such an epiphany. I didn’t mind his interference at the time. I was, after all, in desperate need of an epiphany. Before getting treatment for bipolar disorder, I wouldn’t sleep for weeks at a time. I’d make reckless decisions without thinking of the consequences. Then, without warning, the reverse would kick in: I’d be unable to get out of bed; I’d miss days or weeks of classes; I couldn’t concentrate or care about homework. It was, in retrospect, not an easy way to succeed in college, or even to survive.

So I was grateful for the book, for the help I got, for the medication that I still take, now, years later.

I’ve never stopped wondering about the disability memoirs that come out each year and what they mean to us, as disabled readers. I also wonder what the memoirs mean to nondisabled readers, whose motives might not be so kind.

When I became a rhetoric professor, I published an article, “The Genre of the Mood Memoir and the Ethos of Psychiatric Disability,” about psychiatric disability memoirs (the kind of article that no one reads, in a journal that no one has heard of). I argued that people with psychiatric disabilities were able to reclaim their authority as speakers, and as members of society, using what I called the “mood memoir” genre.

Mood memoirs provided a way of saying, “I still have control over my own story.” Even, “I still have control over my own life.”

In studying mood memoirs, though, I discovered that the genre has certain limitations. Authors must meet specific reader expectations: readers expect to be inspired, to read about overcoming disability, and to read coherent, truthful narratives. Memoirs that don’t conform to these conventions of inspiration, overcoming, coherence, and truthfulness are often rejected by readers. They either don’t make it to the bookshelves in the first place due to publisher gatekeeping, or when readers don’t find what they’re looking for, they rake authors over the coals.

In the past, in order to rebuild credibility in a normate-dominated world, disabled memoirists sought hyper-verisimilitude. After all, if our disability supposedly damaged our perception of reality, what better way to prove our doubters wrong than by hewing to the doubters’ own standard of truth?

But today, disabled writers are pushing back. Today, we’re recognizing that the normate memoir genre doesn’t fit disability stories. And not only when it comes to truth, but when it comes to everything.

Memoirs of disability are often studies in suffering. But what I’ve found in my research is that normate readers don’t actually want to read stories of suffering—not by itself, at least. They want suffering-plus. They want some form of Aristotelian catharsis—a release.

Aristotle, in the Poetics, defines tragedy as “a representation of an action which is serious, complete, and of a certain magnitude…and through the arousal of pity and fear [effects] the [catharsis] of such emotions.” It’s not enough to read a story that arouses pity and fear—a tragedy (such as a disability memoir) must also provide the catharsis of these emotions in the reader, or the story has failed. At least by normate standards.

Normate readers who read disability memoirs want to cleanse themselves of their feelings of pity for and fear of disabled people.

But the normate reader’s demand for catharsis leaves disabled authors in a bind. To hew to the demand for normate truthfulness, a story might not have any redeeming qualities except for the disabled writer’s ability to tell the story in the first place. A suicide survivor who is alive and writing has already overcome a lot, but for this genre, which requires catharsis for the reader, mere survival is not enough. To meet the normate reader’s demands, there has to be more. There has to be redemption. The author has to “get better.” The sine curve must come all the way up again.

But what if there isn’t any redemption? What if, after the suffering, all the person makes out with is her life? Those stories are too depressing, aren’t they? No one will want to read those, will they?

Or will they?

A suicide survivor who is alive and writing has already overcome a lot, but for this genre, which requires catharsis for the reader, mere survival is not enough.
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In 2015, I published a long-form essay about motherhood and suicide. My essay was a little dark, sure, but so is everything else I write. I pointed to a massive, multi-year study of parental suicide attempts and their effects on children published in the Journal of the American Medical Association (JAMA). “Its findings show that having a parent who attempted suicide, even controlling for other factors, ‘conveys a nearly 5-fold increased odds of suicide attempt in offspring,’” I wrote, and added, “You might not see it if you aren’t looking for it, but one of the subtexts of this study is motherhood, along with its favorite hobgoblin, guilt.” Motherhood and guilt? Yes.

In the study, the researchers addressed some weaknesses in their research, including that their “probands are mostly female,” but they didn’t get into why mothers might try to kill themselves more than fathers.The point was, this study actually had a lot to say about gender and parenting. So, I wrote about my own suicide attempt and my own family, my own disability and my own fears. And it provided no catharsis.

Readers’ responses to my essay were strong, mostly positive.

The few negative responses, though, policed the piece in familiar ways:

“i don’t know. i mean, obviously i’m glad my mother chose to have children, or i wouldn’t exist! but i think you’re kidding yourself if you think living with someone who oozes unhappiness doesn’t have an impact.”

“You have nothing to feel guilty about if you do not use your suicidal [sic] as a threat to your children, but some parents do.”

“But I would gently suggest that you talk to your kids about your depression and suicide attempts only after consulting with a good therapist who specializes in working with kids.”

“It’s hard to have a parent that, through no deliberate fault of their own, isn’t a [sic] one hundred percent available support for coping with the trauma you have. It gets so much more complicated when they’re the source of all that [shit.]”

I knew, objectively, that these commenters weren’t talking about me, Katie, the person who wrote the piece, because they do not know me. I wasn’t the source of all that shit. The parents of the commenters were. Why were they so angry at me?

Because I’d broken the genre rules, and they were punishing me for it.

Let’s go back to Aristotle, to his triangle of rhetorical aims.

My intended audience was others like me, who’d considered or attempted suicide, and who might also have been parents or considered becoming parents. I also knew I’d be reaching others beyond that group.

My intended purpose was to reveal my darkest fear, and by doing so, help others who shared that same fear: that I’d harmed my children when I’d considered suicide.

So far so good.

My writerly persona, though—that’s where I failed.

The normate expectations for the mood memoir include redemption. The writer must suffer, and then find redemption. It’s the path of Aristotelian tragedy. But I didn’t apologize for nearly dying of suicide, or for the risks the JAMA study says I now pose to my children. I was not sorry. In fact, I was angry. I was furious that maternal suicide disproportionately affects our children. Maternal everything disproportionately affects our children. The burden on mothers is way too high—from what we can eat when we’re pregnant to how we parent our infants and toddlers. Everything we do is monitored, studied, checked, and regulated.

And then the researchers dared to throw up their hands: Why do more moms try to kill themselves than dads? It’s beyond us.

I had a deadly illness. It nearly killed me, but I survived. I refused to apologize for it.

The result? Some readers were mad I hadn’t been sorry. I hadn’t been remorseful for the harm my suicide might cause my children. They told me to get therapy, that I would hurt my kids, that I should feel guilty.

Repentance is what readers expect of disability memoirs. Repentance brings redemption. Redemption brings catharsis. For readers.

But my disability story isn’t for your catharsis.

The writer must suffer, and then find redemption. It’s the path of Aristotelian tragedy.
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I’m merely part of a trend of disabled writers dismantling normate genres.

Karrie Higgins took on normate veracity with her essay “Strange Flowers,” when she took to task doctors and teachers and more, all of whom let her down, doubted her and mis-treated her. An angry reader, “Coco,” attacked the truth of Karrie’s story. “This work is more like magical realism inspired by some real events but woven into a fictional and surreal landscape,” Coco wrote. “So my mixed feelings come from using the shock value of a supposedly true first person narrative.”

In her essay, Karrie tackles truth as she struggled to put in order the evidence of her brother’s sexual abuse of her: “I walked the galactic paper trail like a labyrinth, but the sequence felt wrong, even though I obeyed the strict chronology dictated by the documents. I didn’t remember my life in that order. I was not even sure things happened in that order, even though the documents said so. Maybe the order people discover things is the order they really happen.” In attacking “truth,” Coco merely reinforced Karrie’s project of questioning truth-telling itself.

Porochista Khakpour, in her new book Sick, also challenges normate memoir rules, as the New Yorker notes: “‘Sick’ is a strange book, one that resists the clean narrative lines of many illness memoirs—in which order gives way to chaos, which is then resolved, with lessons learned and pain transcended along the way.” As the review points out, there is a disability memoir genre that normates expect, one with a clean storyline and transcendence. Khakpour has kicked the genre to the curb.

Kay Redfield Jamison wrote an important, groundbreaking book that created the space we needed. In the decades since then, we’ve been changing the rules of disability memoirs. Some readers have resisted this change. They’ve gotten angry.

But disabled writers are not here for your genre expectations, not anymore.

One day I woke up in a hospital bed and could not feel my face. I looked around and saw people crying all around me. I could not recognize those in the room with me, nor remember how I got there or what was happening. All that I knew was that I could not move or even speak. Then it all turned to black; I couldn’t tell you anything else from that day or that month for that matter.

I have a lot of fragmented memories like this one after being hospitalized for a large portion of my late teenage and young adult life. This was a result of sustaining a TBI (Traumatic Brain Injury) among multiple other internal and external injuries stemming from a very violent act inflicted upon me by a man I did not know, but who felt entitled to ownership of my existence. Fortunately, I survived. However, navigating life as a disabled person thereafter, in an inherently ableist society, often led me to question why. Why bother? This especially became a recurring thought in my mind whenever I faced mainstream issues or experiences that excluded or denied disabled people our humanity.

The latest reiteration of normalized ableist exclusion has been the bans and debate regarding single use disposable plastic straws. Every time I come across it online, another one of these vivid memories from my life living in the hospital intensive care unit stirs up in my psyche. I remember in particular one of my friends from high school, Dini, sitting by my hospital bedside, feeding me baby food with a plastic straw that had a tiny spoon fashioned at the end of it. When I had graduated to receiving my sustenance through my mouth rather than through an IV, I had to start with liquids, ingested via regular plastic bendable straws. Eventually baby food and other blended-up food items were fed to me by these special plastic spoon-straws, provided in many hospitals to their incapacitated patients. My jaw had been wired shut for about a total of six months, and plastic straws were the only way I could eat and take my meds.

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Paper straws were of no use, especially for hot liquids—the paper would just disintegrate. Metal straws were not an option either, because they could lead to potentially serious burns in my already fragile mouth, face, and body from their hot content, not to mention that the metal could damage fresh surgical sites. But also, if I did not have the fine motor functions to eat or drink by myself at the time, having to clean and disinfect reusable metal straws was certainly out of the question. I tried every type of straw there was during that time period to find that only the bendy disposable plastic variety were of any use to me. This is likely the case with people suffering from ALS, dementia, stroke, seizures, or other kinds of disabilities and health issues that would require the regular use of them.

Those who want to ban plastic straws argue for these unusable alternatives, or say that disabled people should provide our own straws—at our own expense and effort. That we are expected to do this in order to maintain some modicum of a normal life is only half of the issue with this recent rendition of strawgate.

The issue of plastic straws seems to regularly cycle in the mainstream, but a recent viral video of a turtle with a plastic straw stuck in its nostril furthered the impetus for strawgate 2018. It has now resulted in real life bans and never ending ableist debates across developed cities all over the world from Vancouver to Seattle to London, regarding the impact of straws on the environment. In all of the debates and proposed or implemented policies thus far, most have failed to include the disabled community—those of us who depend on plastic straws to carry out basic functions of daily living.

In all of the debates and proposed or implemented policies thus far, most have failed to include the disabled community.
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Questioning the ableism in these sweeping bans is often met with the rhetoric of “well if you need straws, bring your own.” But when you ask a disabled person to provide their own straws, think of the equivalents. You would not ask an abled bodied person to be even mildly inconvenienced to regularly carry their own chairs and table to an eatery, or carry their own oxygen mask onto an airplane. Thus the onus to offer environmentally friendly alternatives should not fall on disabled people. If an establishment is truly committed to the environment and their clientele (because both are capable for consideration simultaneously), the responsibility to seek and offer viable and usable alternatives that also work for disabled people and not leave us excluded, is on the establishment.

Furthermore, the understanding that for many disabled people, the alternatives just don’t, won’t, and haven’t worked for us, is truly absent. Disabled people are constantly under attack, heavily scrutinized and regularly challenged about what we often already know works best for us. After all, we are the ones who’ve lived in our disabled bodies as long as we have and have likely tried the whole gamut of suggestions that any abled bodied person could ever think up—no matter how well intentioned. The reality that disabled people can be masters of our own experiences, and therefore the most experienced regarding our own life situation, seems to be amiss among those who do not share our lived experiences as disabled people. The ludicrousness of being told, expected, and even demanded repeatedly to use alternatives that we’ve likely explored and already know don’t work, is akin to a lay person instructing a cancer treatment surgeon on how and where to remove a tumor. Mastery comes from experience, and there is no greater mastery than that of lived experience.

Disability Rights Are Conspicuously Absent From The Women’s March Platform
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Every so often this uproar about plastic straws makes its way around social media and becomes yet another pop culture display in self righteous faux activism. But the actual facts surrounding ocean plastics are lost under the performative outrage about plastic straws and their environmental consequences. Straws become a false flag that distract the everyday person from real and more pressing issues about the environment, and obscures who should really be held accountable.

Plastic straws are a relatively tiny percentage of ocean plastics. Having worked for turtle conservation centers from Ceylon to the Maldives, and being an island person from indigenous cultures where our ways of living are inextricably linked to the environment that surrounds us, I’ve seen firsthand the devastation of plastics on our waters and ocean wildlife. But of all the ocean plastics that washed ashore every day, rarely were any plastic straws. Over 46% of ocean plastics are from fishing nets and gear that are disposed of or left in the ocean. But are we willing to give up on keto salmon diets or our fishing industries, or demand more stringent practices for fisheries, to end the devastation these cause to ocean wildlife?

None of the hundreds of turtles that we tried to save and nurse back to health at the conservation centers had been harmed by straws. They had either been severely injured and dismembered or killed from boating accidents. From massive luxury ocean liners, to personal boating vessels, to getting caught in the motors of small fishing boats, it was absolutely devastating to see how many turtles were regularly harmed or killed from human leisure activities. Are we willing to put a cap on human interaction with ocean life and the seas? Are we willing to dial back on ocean wildlife excursions or fishing/boating trips because of their harmful consequences on these poor animals?

I’ve seen firsthand the devastation of plastics on our waters and ocean wildlife. But of all the ocean plastics that washed ashore every day, rarely were any plastic straws.
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It is also irresponsible to place the weight and accountability of solving the ocean plastics problem onto individuals. The majority of ocean plastics are from a handful of powerful industrial conglomerates that pollute our oceans despite being warned of the consequences to their behavior since the 1970s. But so-called developed nations have not been making enough substantial, concrete, and legislative changes to seriously help the environment.  In addition to not doing enough in holding big businesses accountable for their waste, developed nations often blame developing countries as the sole contributors to our ocean plastics problem, while they quietly ship these countries their plastic waste for disposal. Countries like the United States also refuse to sign onto global conventions attempting to address this urgent issue. While individuals in the west pay more than 90% of the cost of recycling, their governments of these developed nations hand out huge subsidies to big businesses in fossil fuels—even though plastics are made out of fossil fuels.

It is indeed an overdue necessity that we clean up our oceans and find sustainable alternatives to our plastic problem, but straws that can make the difference for disabled people as a necessary accommodation are not the hill ableds should die on. We often hear “every little bit counts,” but even if every single person in this world reduced their plastic consumption drastically, it will not have ANY significant effect on our oceans. Instead of putting the onus of reducing ocean plastic waste onto an already marginalized group, why are we not holding these huge multi-billion-dollar corporations accountable for the massive amount of pollutants and plastics they’ve disposed of that are steadily obliterating our environment?

The majority of ocean plastics are from a handful of powerful industrial conglomerates that pollute our oceans.
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The inclusion of disabled people’s needs and accommodations—or even our very existence—always seems to come in the form of a hasty afterthought (and usually after much outcry from disabled communities). People rarely consider disabled people, whether in their policies or in practice within their everyday life. Nor do they consider the necessity of disability inclusion until after disability strikes them on a personal level. But disability inclusion and disability justice has to start being proactively considered and implemented, rather than relegated as a half-assed pitiful attempt after the fact.

Disabled people have value and are active members of society whether you choose to see us or not; therefore mainstream discussions about public policy and social change needs to include us in these processes. When we tell you what it is we need and the accommodations that we require, believe us. It’s not much to ask that businesses seek out and invest in viable alternatives while also keeping proven options that disabled people need available. Blanket bans don’t work in a diverse society filled with all different kinds of groups of individuals with unique needs and lived experiences, and disabled people shouldn’t be forced to draw attention to ourselves through never-ending requests that you make accommodations for us.

Maybe if disability inclusion training was normalized, this wouldn’t have to be said. But until then, I have to make these points. Blanket bans unreasonably force disabled people to advocate for special considerations about necessary and reasonable accommodations requests that should already be in place. This often results in arbitrary and inconsistent decisions reflecting often inaccurate perceptions about necessity or merit that are framed by ableist biases and assumptions, from individual staff members that may not have the knowledge, understanding, or training about disability inclusion and accommodations. It goes without saying that disability justice and inclusion training should be a staple of every establishment and public service.

We need to hold big businesses and governments accountable for their pollutants and ocean plastics waste, rather than putting the weight of environmental concern, action, and sustainability onto individuals. There is only gain from offering tried and true plastic straws to those who depend on them, and these should be offered without questions nor proof of disability. Considering the popularity of strawgate, it’s reasonable to assume that those who do not need plastic straws will not insist on having plastic straws be given to them. We need to move away from being an ableist society that demands disabled people prove our legitimacy, especially when current methods of having to legitimize ourselves are most often carried out in ways that are deeply dehumanizing and embarrassing, a breach of our privacy in a public setting, or otherwise exhausting.

Disabled people have a right to have our humanity and dignity recognized, considered, and accommodated without becoming the casualties of performative faux altruism by ableds. Ideas about accessibility should not be relegated to being a hasty afterthought out of pity, guilt, or irrational fears. Listen to what disabled people tell you we need—even if that means plastic straws.

Cognitive disability is typically decorative in the horror genre—a surface on which to project our fears—but ‘Hereditary’ is one of the first horror films to complicate that narrative.

Warning: there be some spoilers ahead!

For me, the most haunting image of disability ever depicted in a horror film is a sequence in Stuart Gordon’s From Beyond (adapted from H.P. Lovecraft’s short story). A woman peers at the inmates of a psychiatric institution through the tiny windows of their rooms, their aggressive performances of mania framed like paintings in a gallery. The imagery sticks with me for its tidy encapsulation of the attitude toward cognitive disability in the horror film.

Cognitive disability — specifically, a stylized form of cognitive disability that I will refer to as madness — is decorative in the horror film, a surface on which to project our fears. Unfortunately, this particular depiction of madness serves as little more than a colorful, sensational accoutrement, reducing disability to a storytelling or stylistic device, playing into a medical model of disability that reduces its complexity into a series of external expressions to be controlled and eliminated.

Ari Aster’s excellent film Hereditary risks the same fate and interpretation.

On the surface, Hereditary appears to be a film in which disability constitutes a prop in a play of terror, only to be overwritten and forgotten in the presence of overwhelming supernatural explanation. But to ignore the role of real mental illness in Hereditary would be to miss a salient facet of the disabled experience and the role of mental illness in horror cinema.

Terminology is important here, because different terms imply different models: I use “mental illness” deliberately because that is, I think, the lens of certain characters in the film, and it seems the most apt term to describe Annie’s relationship to the idea of cognitive disability, which dominates the early film.

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To ignore the role of real mental illness in Hereditary would be to miss a salient facet of the disabled experience and the role of mental illness in horror cinema.
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When Annie lays out her family history, she uses clinical terms to describe her family members’ various mental states — psychotic depression, schizophrenia, etc. — in a subdued scene that minimizes sensationalism and emphasizes Annie’s process of medicalizing, rationalizing, and therefore managing her family according to one of the most prominent models of disability.

Tobin Siebers, noted professor and disability scholar, usefully lays out the two major models of disability: “the medical model defines disability as a property of the individual body that requires medical intervention,” while “[t]he social model opposes the medical model by defining disability relative to the social and built environment.”

Siebers suggests that “the next step is to develop a theory of complex embodiment that values disability as a form of human variance.” Hereditarydramatizes a shift from the medical model — e.g. Annie’s representation of her family — to a model of complex embodiment exemplified by the film’s ending.

Disability theorist Robert McRuer suggests there is a transient nature to disability in the dominant cultural imaginary: “According to the flexible logic of neoliberalism, all varieties of queerness — and, for that matter, all disabilities — are essentially temporary, appearing only when, and as long as, they are necessary”; this may be enacted through the “miraculous cure,” as Martin Norden calls it, or through disavowal of a disability that was never really there in the first place.

Take the third Nightmare on Elm Street film, Dream Warriors, which is centered on teens incarcerated in a psychiatric facility. The terror the teenagers feel for the murderous Freddy Krueger— who hunts them in their dreams — is mistaken for mental illness, and the children must battle the staff whose misconceptions could (and sometimes do) prove fatal to them.

Dream Warriors encapsulates the ways that disability functions as a veil to be discarded and a label to be rejected: The protagonists aren’t actually “crazy,” not like those people — namely, the “hundred maniacs” said to have fathered Freddy Krueger. If Hereditary at first appears to be just such a film — in which disability appears early and is later discarded — closer readings reveal it to be a much more nuanced take on disability.

Where so many horror films use disability as a cover for or diversion from the supernatural, Hereditary is both part of a tradition of films that use horror to explore mental illness as lived phenomenon and part of a recent wave of body horror films that redefine the imagery of the genre.

Mental illness in horror is madness; not madness in the way that the word has been re-appropriated by, for example, a variety of groups and movements that have used the moniker “Mad Pride” in celebration of mental illness, but in the (arguably related) sensational, exploitative sense, preceding scientist or doctor: madness as the horrorization of disability.

Women-Directed Horror Films Take Aim At The ‘Celluloid Ceiling’

Madness is a cloak in horror cinema: It drapes its subject in meaning; it’s an easy shorthand for a medium whose mantra is show, don’t tell. The villain is mad: dangerous, unpredictable, shattering the boundaries of acceptable behavior. Whether in the tradition of tinkerers like Dr. Frankenstein or killers like Norman Bates, mental illness is stylized into madness (or perhaps the reverse: style goes mad) and then violence is projected onto it.

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'Hereditary' is both part of a tradition of films that use horror to explore mental illness as lived phenomenon and part of a recent wave of body horror films that redefine the imagery of the genre.
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It is a well-worn truth that mentally ill people are more likely to be the victims of violence than to inflict it themselves, but the problem with the “madman” trope is as much in its hollowness as in its inaccuracy: It is all surface and no depth, fleeting and ephemeral. However, there is another strain of horror, which I’ll call mad horror, that explores madness in a different way: namely, as an experience, a “complex embodiment” in which a person lives.

Mad horror cinema can be traced at least back to The Cabinet of Dr. Caligari(1920), in which the exaggerated, subjective sets that have come to define German Expressionist cinema are the representations of a mind in the throes of madness.

Caligari, through its use of exaggerated, counter-realistic design, narrates the process of rendering mental illness into madness; it is the process of, in Siegfried Kracauer’s words, the “transformation of material objects into emotional ornaments,” the visualization of the ostensibly invisible. Caligarihelped set a precedent in horror for the visualization of cognitive disability in everything from cinematography and lighting to physical sets and props (since Caligari, sound cinema has allowed for the use of sound effects to signify madness as well).

The projection of madness into the physical environment of Caligari is echoed in Hereditary through Annie’s hyperrealistic miniatures and her daughter Charlie’s grotesque dolls. If Annie’s gallery of perfectly lifelike imitations reflects her attempt to maintain sanity in her family, Charlie’s suggests an abnormal mind that foreshadows an alternate reading of the film.

As much as it is the story of a coven of witches conspiring to place the spirit of Charlie (who was really a king of hell all along, or something) into Annie’s son Peter’s body, Hereditary may also be Peter’s slow break from reality, probably triggered when Peter accidentally kills Charlie. From this standpoint, it makes sense that Peter would symbolically resurrect Charlie the only way he can: within his own body.

Sex, Nudity, And Rape In Horror Comics: Where Are The New Lines?

Peter’s descent into madness echoes mad horror films like Repulsion and more recently films like Black Swan and Darling: films that explore mental illness as a lived, physical experience, in which the horror is derived from one’s mental state. Hereditary — in presenting multiple possible readings — is a film that revels in the slippages between psychosis and the supernatural and the indeterminate nature of that boundary.

The line between those two phenomena has always been tenuous in the horror genre, but Hereditary takes that boundary as its secret subject. Before Hereditary, David Cronenberg’s Videodrome more overtly explored the same slippage between reality and hallucination. “There is nothing real outside our perception of reality,” Brian O’Blivion tells Max Renn, suggesting that reality is just one shared hallucination.

Hereditary follows in Videodrome’s footsteps both by exploring madness as something lived rather than merely seen and by disrupting the line between the real and the unreal and that between body and mind.

In his book Crip Theory, Robert McRuer argues that:

“[a] system of compulsory able-bodiedness repeatedly demands that people with disabilities embody for others an affirmative answer to the unspoken question, ‘Yes, but in the end, wouldn’t you rather be more like me?’”

McRuer, by contrast, proposes the radical possibility of taking pleasure in disability, that “disability and queerness are desirable.” (McRuer’s focus on queerness — in addition to disability — is actually quite relevant to a film centrally concerned with the breakdown of a traditional nuclear family unit.) This desirability is central to Cronenbergian body horror, particularly the oeuvres of Cronenberg and Clive Barker.

Hereditary — along with recent films like The Neon Demon, The Lure, and Get Out — is a kind of post-Cronenbergian body horror focused less on dramatizing transformation visually on the body, but rather on redefining the relationship between self and body and between body and image.

Less sadomasochistic than their predecessors, post-Cronenbergian body horror (which actually may be said to begin, ironically, as far back as Cronenberg’s own Dead Ringers) focuses less on pleasure and more on the uses and abuses of the (literal and metaphorical) social body, like the dehumanizing cult of female beauty in The Neon Demon.

Hereditary explores not only the mad body but the familial body, specifically that of the nuclear family, whose supposed safety and stability — signified by Annie’s rigorous models — is seen to be, in reality, tenuous at best (while the models themselves comment on the constructedness of the nuclear family). That the film ends on a coven chanting around Peter at the coronation suggests that the conventional family has given way to a non-conventional family just as Peter has entered a non-conventional mental state. As in Hereditary’s predecessors, this ending may not be undesirable to those actually experiencing it.

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'Hereditary' explores not only the mad body but the familial body, specifically that of the nuclear family, whose supposed safety and stability  is seen to be, in reality, tenuous at best.
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Like Caligari, Hereditary has a frame of sorts, opening on a pan through a room full of miniatures before settling on a model of Peter sleeping in his bed, from which the action seamlessly begins. By framing the entire film as, quite possibly, an exhibit of Annie’s art, the film blurs the line of narrators: is the film Peter’s, or in opening on Annie’s model of Peter, is the film Annie’s?

Hereditary is a familial intermingling of consciousnesses — Annie’s, Charlie’s, Peter’s — that defies representations of mental illness as surface level stylization or as a problem in need of a cure and in doing so, resists the stigmatization of disability so prominent and dangerous in the horror genre. Despite a fraught and complicated history, the horror model of disability can offer a surprisingly nuanced and empowering way of looking at the experience of madness.

Here at The Establishment, we spend a lot of time talking and writing and thinking and scream-crying about the elaborate ways in which homosapiens wrong one another. (In addition to the planet, non-human animals, and maybe even extraterrestrials—there’s a LOT of space-junk out there people.)

We thought that this Valentine’s Day, we should talk about love, but Establishment-style, because the white supremacist capitalist patriarchy doesn’t take a day off.

So we partnered with the Creative Action Network — which “crowdsources campaigns around causes, inviting anyone and everyone to contribute their own designs” — to help us host an art project to talk about love in 2018…

…and turn one chosen design into our official Est. Love T-Shirt.

Out of 14 amazing submissions we chose the work of Artemis Xenakis, which you can buy below!

Here’s what Artemis had to say about her work, her life, and the beautiful aberration we call love.

“Our bodies are the vessel for how we experience the world, and the world has an ever growing fracture from the absence of love. Where love has recessed, systems of oppression take hold, diminishing humanity down to the bodies that carry us through this existence. Living under these measures, we are all at odds within our very selves, with our fellow people, and with our home planet. This is because Love needs a space to manifest, a vessel to carry its truth in the forms of empathy and true equality. Love needs to grow from the decay of hatred. Love needs to heal fear. Loves needs the full participation of people to be felt, given, and known. Love needs all bodies to be.”

We talked to Artemis to find out more about her brilliant design, her artistic process, and her thoughts on love and existentialism.

(Check out the other holy-shit, hell-yes submissions throughout this interview as well — all of which are on sale too!)

KATIE: Tell me a bit about yourself! Where did you grow up, when did you realize you wanted to create art and anything else wonderful or strange you’d like to include…

ARTEMIS:

It’s hard for me to trace back to a moment of realization with art because I can’t remember a time I didn’t draw on something, anything; a coloring book; a napkin; my bedroom door (the latter was much to my parents’ chagrin, yet they understood my drive).

My mom especially is very supportive of the Arts and Artists; she was an art docent for my classes all throughout elementary school, so I just grew up with a strong yet subconscious understanding of its importance in education and societal roles. I say subconscious because as an adult I see in retrospect how that form of expression influenced each of my interests and drives. Drawing was certainly art’s first manifestation in my creative pursuits, and it only ever spiraled from there.

Mythology was presented to me early on—in part because of my name and Greek heritage—but also because of my psychological response to these stories. When I wasn’t actively pursuing a creative work I was taking in myth and symbol from all corners of storytelling and filtering them through my passive thoughts and feelings.

And in the nature of peculiar things children do when left to their own devices, I would make art in ritualistic ways that I understood later in my early adulthood to be akin to Witchcraft practices. For instance, I loved to climb trees and carve made-up symbols in the branches that were meant for only the tree and me to understand; I would write poems that were meant to conduct any negative feelings I had and then I would take my frustration out on tearing up the paper and throwing it away. Communing with nature, directing your energy in sigil writing, banning negativity and enacting for what you want, all take creative thought and process.

KATIE: How did you develop the idea for your submission? Where did you find the heart and body and rose to collage together?

ARTEMIS:

I’m an amputee, and I’ve been trying to craft a dialogue about disability in my art for a few years now. It’s a subject that’s still otherwise in progress because I feel like it deserves an exchange of voices outside of my perspective of disability, too. This image used for “Love Needs…” is one of the first I created pertaining to the concept of just addressing what being disabled is, sans able-bodied expectations. I’ve participated in live figure drawing both as an artist and a model, and I was surprised to experience the latter with the response of people expressing that they saw me as beautiful despite being disabled.

I was so distraught over the idea that there must be a lack of self ownership over all parts of me to function; as if I adorn my aesthetic in spite of one thing that’s perceived to be unlike the rest of me.

I knew it was time to take control of this misconception and demonstrate my self-love and autonomy. It came from having to live in a culture that wants me to live in spite of myself, and learning through my process of resistance to this that there’s a multitude of reasons other people are expected to do the same.

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Ultimately, it expanded my empathy for understanding all kinds of systemic oppression. So this image roots in disability, but for this particular project I wanted to express the sentiment that we intersect at our bodies, especially for those of us that are minorities to the default and who have a common goal of having to declare our truth and demonstrate our importance. By embodying empathy for one another we can create a larger voice in response to what is considered normalcy.

For the image itself, I used illustration combined with photography that I took during my personal nature walks while living in San Diego. I love the synchronicity of nature’s cycles, and observing the intricacies of how these processes express themselves in color and form. I love getting up close to plants and using micro-focus to display them as greatly as the role they play in our Earth.

These walks I took by myself were the beginning practices of learning to enjoy my own company and make time for myself. This rose and these leaves in particular, I remember from a whimsical stroll through San Diego’s Rose Gardens. Nothing extraordinary happened during that walk, but when looking at those photos I remember it as if it were yesterday. And those leaves are naturally those colors; that vibrant red and green kissing is nature’s complimentary contrast, not mine. I just played with their tone.

As my most formal discipline is Graphic Design, I was able to combine all these elements together digitally. I feel like Graphic Design is the “Math” of the Arts, and I definitely apply a calculated approach when trying to balance the organic forms and enigmatic symbols I love, with the articulation that proper expression calls for.

KATIE: What is the role of art in actualizing social change? Do you believe that the Artist needs to play a role in undermining systems of power?

ARTEMIS

Art definitely serves as a conduit among major movements, I think largely in part because artists are usually individuals oppressed by these systems of power. Rather than focus on the trope of the “tortured creative,” I think we need to begin considering the ways our society (at least in America) diminishes the arts as a viable skill and career that sustain both the artists and the cultures we contribute to.

Authentic art can’t function under capitalism, censorship, or other forms of oppression and exploitation without becoming propaganda, and I believe authentic artists are among the first to call that out. And I do mean “Artists” as more broad of a term than I think we’re used to attributing to it; I think the upswing in progressive activism we’re seeing is a perfect example of demonstration as art.

KATIE: How do you describe your work as an artist? What mediums or themes are you drawn to?

ARTEMIS:

Drawing is more like a sense to me that I rely on for executing spatial intelligence, and the mediums I use are the moods I shift them in. I love graphite when I’m being open to interpretation; it’s something I use when I’m open to letting a piece stand alone without needing a background or any sort of detail framing it.

I love ink when I’m feeling precise and have an organized subject in my mind; even my pieces where I get messy with ink are more illustrative and balanced than most of my graphite drawings. I do very amateur photography, but I developed an inclination to use this medium when I feel like any way I attempt to hand-render a subject wouldn’t do its beauty complete justice.

I can’t draw roses worth a damn, but look how richly nature produces these all on her own. I find inspiration in the storytelling of female archetypes in ancient mythology, the lens into the old ways our fore-mothers across the world have contributed to society that often gets overlooked.

Most of my subjects involve deconstructing the traditional forms and adorning them in natural elements that have been attributed as feminine symbols. These elements also reflect the same impermanence found in all forms; the phases of the moon; the crystallization and disintegration of earth.

KATIE: What role does Love play in your life? How does it manifest?

ARTEMIS:

I’m fortunate that I have a lot of love in my life now, and have come from a supportive family. But it took a lot of discipline for me to manifest the romantic love that I have now.

I experienced a string of abusive, tumultuous, and otherwise toxic relationships from my teens to young adulthood, so I decided to take a break from commitment in my early twenties. At the same time I began cutting ties with friends that I felt were mirroring the same behavior as my exes — or, in some cases, remaining complicit to the toxic cycles those people were conducting as I was actively trying to remove myself from all that. My views on relationships were pretty jaded coming out of that initially.

But it forced me to examine how my giving qualities were being displaced to people that didn’t deserve that much of me, and give it back to my craft so that my art could benefit from my need to nurture. In doing that, I learned to give love and strength to parts of myself that I previously mistook as weaknesses. It was another process of reclaiming parts of me that got swept up in external energies.

Once I was able to give that much to my creative drive, it became a force that worked its way into every facet of my life once more. I met the love of my life in art school; we were friends for years before we began dating, and that trek to our current relationship helped serve as additional lessons I needed in understanding unconditional love.

By embodying empathy for one another we can create a larger voice in response to what is considered normalcy.

There were time-appropriate barriers that stalled the beginnings of our relationship, and I reached a point where I knew I was going to be an awful friend to him and others if I kept harboring unhealthy feelings about my attraction to him. I had to deconstruct those feelings that stemmed from ego and fear, and embrace the idea that in order to give love to someone from a genuine place, I had to let go of any expectations for how love should be received.

I learned that to love someone with pure intent is to accept them in every moment as it comes, and that I was fortunate to even have a friendship with someone as genuine as he is. I realized that if I was only able to love him platonically, I would focus all that excess desire for closeness into healthy boundaries for our friendship. I let go of all those ugly feelings, and about two months later our romantic relationship culminated.

Love only wants you to participate if you’re honest, and it’ll open up its channels when it can trust that you are.

KATIE: If you had an intergalactic megaphone and could tell the universe one thing, what would it be?

ARTEMIS:

Assuming that “intergalactic” is affirming reference to my future hope for sky-rocketing off the planet and finding respite in space, my announcement would be: “Message from the Cosmos: Nothing can see you from here!”

Hubris is humanity’s biggest downfall; we regard our human perspective as the pinnacle of existence. I appreciate Carl Sagan’s interpretation of the Universe’s timeline in his Cosmic Calendar method. It linearly maps out the Big Bang to show how minuscule human history actually is among the grand scheme of events that made it possible for us to ever exist.

We’re literally blasting through space at a rate unable to be comprehended by our limited-dimension-perceiving minds; and here we are perpetually berating each other over whose indoctrinated-book is the best, who has the most currency, power, etc.

Humanity could benefit from a healthy dose of existentialism.

The GOP’s Health-Care Bill Would Push More Disabled People Into Poverty

The system around disability benefits is already broken — and it could soon get exponentially worse.

Adapted from flickr/Wally Gobetz

Over the last few months, Trump’s Budget Director, Mick Mulvaney, has frequently turned Social Security disability insurance into a punching bag. In March, he called it “a very wasteful program.” In May, he declared, “If you’re on disability insurance and you’re not supposed to be, you’re not truly disabled, we need you to go back to work.” A day later, presenting Trump’s budget proposal, he stated he is “a lot less comfortable” with telling taxpayers “look, I need to take this money from you to give to this person over here who really isn’t disabled but is getting a disability benefit.”

Mulvaney’s language surrounding disability insurance, though perhaps particularly sharp, is not unusual. The GOP has long suggested that the system is ruinous and routinely abused by lecherous fraudsters. The problem? Such claims do not hold up to factual scrutiny — statistics show that abuse is, in reality, extremely rare. The disability error rate, which counts both overpayments and underpayments to beneficiaries, is well below 1% of all benefits, as then-Acting Social Security Commissioner Carolyn Colvin testified to Congress in 2012. If anything, in fact, the program is so strict that it makes it too difficult to secure disability insurance in the first place — only 40% of applicants are awarded benefits.

Meanwhile, while Republican leaders crow about a problem that hardly exists, a real issue is often ignored: Disabled people are frequently pushed into poverty, or further into poverty, as a direct result of their efforts to secure financial assistance.

The situation has been dire for a while. And if Trump’s draconian budget is signed, and the Senate’s health-care bill passes, it could get even worse.

Many people are unaware that Social Security disability actually takes two forms: Social Security Disability Insurance (SSDI) is granted to disabled people who have worked in the past but are currently unable to do so, while Supplemental Security Income (SSI) is reserved for those who have never worked or only worked a small amount. While SSI is a welfare program, SSDI is insurance — a payroll-tax-funded program the recipient has paid into throughout their adult life.

Award benefits for both programs are meager. For an individual, annual SSI payments top out at about $3,000 less than the federal poverty line. SSDI awards, which are based on the claimant’s previous income rather than on financial need, end up being about $2,000 above the annual poverty line for a one-person household.

Meanwhile, the time between application and approval is, for both programs, prohibitively long: The process can span years, often requiring numerous appeals. And this wait, in turn, can have dire impacts.

Health-Care Activism Is Failing The Disabled Community

Take the case of Courtney, an SSI applicant who shared their experience with me. Since age 11, they have been diagnosed with 13 disorders, the most severe of which are POTS, which causes fainting, lightheadedness, and fatigue, and Myasthenia Gravis (MG), an autoimmune neuromuscular disorder which causes the major muscles to fatigue and stop working. Every five weeks Courtney, now 26, receives treatments to boost immunity and minimize MG symptoms. Treatment and recovery take five days — and without these treatments, Courtney says, they could go into myasthenic crisis, which could cause stop them to stop breathing and halt their heartbeat. Yet even with these treatments, Courtney is unable to meet the physical requirements for available jobs in their area.

Courtney first applied for SSI in February 2016, and has been denied three times. Initially, their disabilities were deemed insufficiently severe. Later Courtney was told that their ability to fill out the appeals paperwork indicated they could work a sedentary job. This kind of justification for denial is not uncommon. Dana Duncan, a Wisconsin attorney who has worked on behalf of disability claimants for 27 years, says that while he doesn’t “want to seem too cynical,” some decision-makers “have gotten jaded, and they’ll put anything down if they want to deny the case.”

Some decision-makers ‘have gotten jaded.’

The success of Social Security claims is further complicated by vocational experts, witnesses who testify for the Social Security Administration (SSA) regarding the availability of jobs that claimants can perform. But as Duncan points out, these experts work with outdated and inaccurate data. Some formerly “unskilled” jobs, for example, now require limited computer knowledge, classifying them as “semi-skilled” — but this change is not reflected in the Dictionary of Occupational Titles (DOT), the reference text used by vocational experts. Despite this, disability claims are often denied on the basis of vocational expert testimony. (The SSA is in the process of replacing the DOT, which was last updated in 1991, with a new Occupational Information System that will more accurately represent job descriptions and requirements. However, this system will not be complete until 2019.)

The resulting appeals process may further intensify financial difficulties. According to Duncan, “Most of my clients, by the time they get to a point where they realize they’re going to be disabled, they don’t have any money. They’re already missing a lot of work, usually before they ever lose their jobs. They have a huge amount of hospital or medical expenses, because even if they were having coverage, between deductibles and co-pays, they have thousands of dollars a lot of times in medical bills.” So even if these clients are approved, by the time they start receiving benefits they “are so far in debt that they can’t even dig their way out.”

‘Most of my clients, by the time they get to a point where they realize they’re going to be disabled, they don’t have any money.’

The financial burdens of medical care and loss of employment are so significant that some disabled people, particularly those lacking strong personal safety nets, become homeless. Though non-institutionalized disabled people account for only 16% of the U.S. population, over 40% of the country’s homeless is disabled. Duncan has had clients who lose their homes during the appeals process and move “from family member to family member,” live in unheated cabins in the woods, or are forced to stay with their ex-spouses. As a result, not only are applicants stripped of their independence, they can be difficult to locate — which, in turn, affects the success of their claims. In fact, disability and homelessness are so entwined that there is government-funded outreach to help the homeless acquire disability benefits.

Successful applicants typically receive back payments for the time they were unable to work and not receiving benefits. However, debt and interest can accumulate quickly. Simone, a 30-year-old SSI recipient I interviewed over email, waited over two years before receiving benefits. According to Duncan, it is common for applicants to wait three to four years, making Simone’s wait relatively short. Even so, most of Simone’s over $13,000 in “back pay” went toward credit card debt and stopping foreclosure proceedings on her home. By the time she received her benefits, one $1,500 credit card payment had ballooned to $6,000. And although she and her husband only owed about $900 on their home, they ended up paying an additional $6,000 in lawyer’s fees, which, Simone says, would not have happened if they had been able to pay sooner. After quickly depleting thousands in back pay, Simone had only her husband’s income of under $5,000 per year and her monthly SSI payments of $698 to live on.

Simone’s situation has stabilized somewhat. Last year, between her SSI and her husband’s job, her household income exceeded $30,000. This is enough to provide for Simone, her husband, and their young child, but, she says, “We’re still scared.” When determining SSI eligibility and award amounts, the SSA accounts for spousal income and family size, which can result in reduced payments or loss of benefits entirely. If Simone’s husband makes more than $31,000 a year, Simone says, she will lose her SSI, “so we are nervous that right when things look up we could end up stuck again, before I have a chance […] to help the household somehow.”

As for Courtney, their second appeal was denied in September 2016, and they have been waiting on a hearing for nine months. If approved, Courtney says, “I would like to move in with my fiancée and start an actual life.” But they still worry about life on disability, saying that even with benefits, “I have no idea if we can ever get married for real, because I will probably lose my Medicaid if we do and without that I can’t afford to live.” And while Courtney would like to have children one day, they are concerned about the expense. Because SSI award amounts are need-based, Courtney’s benefits will be restricted to less than $400 a month as long as they live with their mother. If they move out and support themselves, they can expect around $730.

‘We are nervous that right when things look up we could end up stuck again.’

Such financial struggles would only worsen under the GOP agenda, especially the proposed budget and the new Senate health bill. The budget would cut $72 billion from Social Security disability programs, further restricting the number of people who can access benefits. It would also slash $616 billion from Medicaid and the Children’s Health Insurance Program, which would result in loss of insurance for the poor and sick and lead to incomplete documentation of disability and worse health outcomes.

Changes to the Affordable Care Act would only compound these issues. According to a CBO report released on Monday, the Better Care Reconciliation Act — the Senate’s rushed version of a health-care bill — could result in loss of insurance for an additional 22 million people by 2026, raising the total number of uninsured Americans to 49 million. And while the bill does not let insurance companies deny coverage to people with preexisting conditions, it does allow states to alter essential health benefits, meaning that sick people can be forced to settle for worse coverage. These changes would reduce quality of care and increase medical debt — and these gaps in health care would make disability claims even harder to win.

Limited health-care access also increases the number of people who need disability benefits in the first place. Duncan points out that many disability recipients are only sick because “they don’t get the medical care they need.” For example, someone with heart palpitations or high blood pressure might not go to a doctor until they suffer a heart attack. “If they would have been treated for it when it first started, they probably wouldn’t need to be on disability,” he says. “But no one thinks of that.”

As A Disabled Woman, I Am Terrified By A Trump Presidency

This is not to suggest that the current system needs no reform. Currently, an applicant who tries to work while their case is pending is often penalized with denial of benefits. As a result, it can be easier for people to “sit around […] and wait for [their] benefits to start.” Duncan suggests reforms in this area, as well as the option of a “partial disability benefit,” where the recipient is covered under Medicare and can work part-time. These changes could ease recipients’ financial struggles.

Mulvaney has promised that “We’re not going to measure compassion by the amount of money we spend, but by the number of people that we help.” But this reluctance to spend is the problem — with wait times spanning years, and benefits so meager, it is often impossible for disability recipients to rise above the level of survival.

And as for the implied epidemic of abled people exploiting the system? It “doesn’t happen,” Duncan says. Not only is the process of acquiring disability complicated and long, the payout isn’t worth it.

The Trump administration’s agenda for health care and social programs, he adds, “isn’t making America great again. It’s taking away the basics of what we should have as a country.”

“It feels like the government sees my existence as a burden,” Courtney says, “and so does everyone else.”

]]> https://theestablishment.co/how-to-support-your-disabled-friends-in-winter-and-beyond-dba622c6e2d5/ Thu, 26 Jan 2017 23:14:08 +0000 https://theestablishment.co/?p=5639 Read more]]>

Dare yourselves to reach in.

Winter is lonely.

While Winter is difficult in the best of times, it is significantly more so for those of us who are disabled. Between inaccessible sidewalks covered in ice and snow, chronic pain flare-ups triggered by cold temperatures, and early sunsets eliciting depression, many of us end up stuck at home.

As somebody with a severe mental illness who’s also spent several Winters (and Autumns and Springs) housebound with chronic pain, I’ve had many opportunities to observe the ups and downs of these particular conditions. While I’ve found much joy in being indoors all day everyday (writing a million words a day! Reading hundreds of books! witnessing sunsets that look like rose quartz carnelian lapis lazuli bleeding through the sky! daydreaming! connecting with weirdo cripples near and afar! not being street harassed!), I’ve also fallen into such deep wells of loneliness that I became dissociated and disconnected from reality.

While Winter is difficult in the best of times, it is significantly more so for those of us who are disabled.
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Even for those who are not fully housebound, mobility becomes severely limited when it snows, and our participation in friendships, communities, and public spaces, as well as our ability to do boring survival stuff like run errands, is hindered. Remember, while some of your disabled pals might look cute and productive online, we are struggling at home.

Initially, as I was adjusting to becoming more-or-less housebound, the sheer aloneness of it all triggered some of my worst symptoms, including paranoia, suicidal thoughts, and intense rage and jealousy. I was also sincerely frightened. Frightened that my pain would get even worse, frightened that my friends would leave me. Those things did happen, but I’ve survived thus far, I’ve learned a hell of a lot, and I want to share some of it with you.

Before offering suggestions, I’d like to note that many disabled folks are either too shy to ask for support, overwhelmed with unlearning internalized ableism and navigating our culture’s insistence on self-reliance, or simply burned out. When conditions are chronic, and when we’ve been let down by friends in the past, many of us, myself included, are weary of reaching out.

If you have disabled friends — and most of us do, I hope — I can assure you that they’ve experienced at least one of these barriers to asking for support, if not all of them. Instead of waiting for us to reach out, please dare yourselves to reach in.

1. Bring us food.

Whether you’re gifting us with a take-out or delivery meal, carrying groceries, or cooking at your home or ours, disabled folks need warm, healthy food in Winter. We’re often not able to provide it for ourselves. Ask your friends if they have any food intolerances, and show up accordingly. Consider either gifting us with food, or working out a budget with us so we can give you cash (or a trade, like editing services or a Tarot reading!) to pick up necessities. I personally am fond of burritos (yam! Pulled pork! All the toppings!) and rotis (veggie korma! Lamb! Extra peas and broccoli, please!), and am often in need of vegetables, fresh greens, and bananas and avocados galore. Maybe cantaloupe, kiwi, and watermelon, too?

Disabled folks need warm, healthy food in Winter. We’re often not able to provide it for ourselves.
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Chopping fruits and vegetables is not always possible with chronic pain, so pre-cut and pre-packaged is a better way to go. Many disabled folks are poor, so it’s wise to check in and see what your friends can or cannot afford. For example, I have perishables delivered from Walmart, which means I eat a lot of discounted oatmeal and Mr. Noodles, but fresh produce delivery services, much-needed as they are, are beyond my financial means.

2. Come over and read with us.

Sometimes we don’t need intense conversation (though often we do!), but just company. I read 121 books in 2016, but haven’t had a lot of pals to discuss them with, and am not able to participate in book clubs for many reasons, multiple disabilities being at the top of that list. But I’ve been underlining, taking notes, asking questions, and dreaming. And I’ve been writing. I spend a lot of time in libraries, but that’s not a possibility in Winter. Reading different books in quiet company, chugging coffee together, interrupting the silence now and then to read a favorite line out loud or discuss an idea the author is describing, would be dreamy.

3. Send a text.

Send a text just to say Hi, I’m thinking of you. We don’t have to be BFF’s. If you haven’t talked to someone for three months, six months, a full year, please consider texting them to let them know you value them and haven’t forgotten them. Magic will happen. To be alone at home for such an extended period of time feels, and often is, a form of abandonment. It’s easy to believe you’ve been forgotten. There’ve been many times in my life when I’ve received a short text with a few cute little emojis at a moment of despair when they were needed the most. You could be the person who sends that text. (And hell, maybe we could dare each other to (re-)learn how to talk on the phone as well.)

4. Text to say more than just Hi.

Let’s have real, tough, vulnerable, magical conversations. Let’s share what’s going on in our lives beyond small talk and the weather (even though I actually love discussing the weather, and it’s something I’m doing this very moment). Let’s ask each other difficult questions. Let’s ask each other about our dreams and then work toward making them come true.

5. Set writing goals together.

I’m lucky to have many friends who are writers and zinesters. Whether or not we can be in the same space, we often share word count goals, writing prompts, and words of encouragement. Alone but together, we get stuff done. Writing can be lonely work. It makes a difference to have a few pals to check in and exchange ideas with.

6. Shovel and salt our sidewalks.

Many, if not most, of us are living in buildings with negligent landlords (to say the least). Whether or not other tenants in the building understand that we’re disabled and take these small tasks into mind, many don’t, nor should they have to. While general maintenance of the building is the landlord’s legal responsibility, in my experience, it’s been rare indeed to have a landlord who keeps up with ordinary chores. Have you ever tried to push a wheelchair through snow? Have you ever held your cane’s icepick toward the ground, only to watch it slip out from under you? Clear sidewalks are necessary for the safety of everyone, especially disabled folks. A small path cleared from our entrances to the sidewalks (and garbage bins!) is a lovely gift to give a friend. Remember to clear the pathways at your homes and workplaces, too.

7. When you invite us somewhere, please give us as much accessibility information as possible.

A few years ago, I created the term “accessible physically, financially, and emotionally” as an attempt to define and navigate various forms of in/accessibility beyond ramps. While exploring this term is beyond the realm of this specific piece, you’ll find it useful to think of these terms when describing spaces to your friends. Are there stairs? Is it scent-free? How much will it cost? Will there be seats to rest our sore bones? These are just some basic, beginning questions to ask. Whether you’re inviting us to a public event or into your own home, these queries are crucial.

8. Support our work.

As you may have noticed, disabled folks have tons and tons and tons of incredible writing and art online! And in books! And in zines! And more! And more! And more! And even more! We’re everywhere!

Disabled folks are creative as gosh.
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Disabled folks are creative as gosh, and many of us write compulsively — not because we’re getting paid or getting paid well, but because we must. If you like our writing, a) tell us so, b) share it, and c) keep clicking on our Paypals, Cash.Me’s, and ko-fis. I and many of my friends are on social assistance. Although it’s recommended that one spend 30% of their income on rent, most disabled people spend significantly more than that to live in substandard housing — for example, I spend 75% of my income, and rent in small towns and cities alike is only getting higher. That means literally every penny and every dollar count.

Be kind, be generous, show your appreciation! (But also, don’t just value — or co-opt! — our work: value us.)

9. Understand that while our pain must be acknowledged, it’s not the only thing we’re capable of talking about, and many of us may not want to discuss it at all.

I write about pain often, but I don’t love discussing it in person because it often turns into a trigger-y cryfest for me. Experiences of chronic pain are not only physical, but have emotional, financial, and spiritual repercussions as well. For those reasons, it’s a complex and stressful topic. If you haven’t experienced debilitating pain resulting in limited mobility, as well as the misunderstanding and invalidation inherent in the medical health-care system, please know that it can be a sensitive topic. If we don’t want to talk about it, please don’t take it personally.

10. If you say you’re gonna show up, please do your best to actually show up.

We all cancel plans for various reasons, and that’s okay, but when folks say they’ll be able to give us rides or help carry groceries, and then stop calling, this has devastating consequences on our mental and physical health. Here’s another term I recently created: “Inconsistent (or intermittent) interdependence.” In cripple communities and disability justice spaces, we talk a lot about interdependence. But because I’ve never felt a sense of belonging in a particular community, or experienced consistent and reliable care and support, I haven’t been able to relate to the interdependence model. Instead, I’ve labeled it as inconsistent, which is more true to my own experience, but leaves space open for possibilities — sometimes friends, new and old, really do show up!

This list is necessarily incomplete. I encourage you to try a few of the suggestions, see what works and what doesn’t, and write your own lists. Talk to your sick and disabled friends. Talk to each other. Stay warm, stay weird, and keep living.

Original illustrations by CB Lavery.

Steve Johnson/flickr

I am a black disabled woman. Those six words convey the essence of who I am — not all that I am, but the lens through which I navigate the world. I am black, and I am disabled. But often, these intersecting identities make me twice as much of an outsider.

I was raised by a single mother, who treated my older brother, able-bodied twin sister, and me as equals. Every bike, pair of roller skates, or scooter that they received, I got one too. I grew up shielded from the eyes of strangers and blissfully unaware of the reality of the world. In fact, I genuinely did not know that I was disabled until I reached middle school, when a boy mocked the way I walked across the cafeteria. Up until that moment, I had lived like I was able-bodied, and never considered that my walk was different than anyone else’s. I had never looked in the mirror and seen something or someone I didn’t like.

There was no going back to that bliss, though. The teasing made me painfully aware of my disability; I knew who I was now, and I didn’t like her. I spent middle school and high school trying desperately to take up less space and draw as little attention to myself as possible.

In college, I made friends who never used my body as a punchline, who saw me for the things that I took pride in showing and entrusting them with. My college years were spent unlearning my self-hatred and growing into a version of myself that I could live with. Yet still, I knew only a few disabled folks, and all of them were white.

When I first started my journey of disability activism, I believed that the entire community was inclusive on principle, that issues facing us disabled people of color specifically were just as important to white disabled folks as their causes were to us. But in early 2016, when I started speaking about issues and problems specific to disabled people of color — the lack of representation in the disability community in both mass media and medical media, the fact that 50% of almost all police shootings happen to disabled black people so that if disabled lives matter we should be speaking up and in support of #BlackLivesMatter — I was met with racial slurs and demands to stop asking for my lived disabled experiences to enter the conversation. This visceral response from disabled white people made me realize that in many ways, disabled people of color are really on their own. After speaking to three of the hardest working, most visible, and brilliant disabled women of color I know, I found that I wasn’t alone in feeling this way.

Vilissa Thompson is the founder of Ramp Your Voice!, a group promoting disability self-advocacy; she has osteogenesis imperfecta, also known as brittle bone disease. Thompson is a social worker who got into disability activism because she didn’t see herself represented in the disabled community.

“I have experienced microaggressions when I have combatted disabled whites who are harmful to the community,” Thompson told me via email. “By ‘harmful,’ I mean that they have voiced racist and bigoted comments/posts that are severely problematic.” When I participated in Thompson’s #DisabilityTooWhite hashtag, which criticized the media for whitewashing disability, I got a sense of what she means. After a few of my tweets got some attention, I spent the days that followed blocking white disabled folks who called me slurs and told me I was an embarrassment to the movement and community because, like Thompson, I was bringing the issue of erasure within the community to light.

Maysoon Zayid is a writer, actress, tap dancer and advocate. Like me, she has cerebral palsy. I first became aware of her work when her TED talk, “I got 99 problems…palsy is just one,” went viral, with well over seven million views; the talk helped shape the way that I saw cerebral palsy and in turn, myself. Zayid, who dreams of acting on the soap opera General Hospital, became a disability advocate when she realized that disabled actors were being shunned in entertainment and media.

“I realize that in order to achieve my mission, I would need to change how Hollywood looked at and portrayed disability,” Zayid told me. “I am a fierce advocate for disabled actors playing disabled characters instead of non-disabled actors ‘cripping up.’ Those portrayals are harmful to the community. Visible disability, much like race, cannot be played and the portrayals come off as cartoonish and offensive. So I want to change that.” Zayid is developing a comedy series written and starring herself titled “If I Can Can,” a show that will have disabled cast and crew members. It has taken her seven years to find producers.

While Zayid works to change the face and attitude of disability in Hollywood, she’s having to do the same thing in the disability and Muslim communities. She says that she spends a lot of time explaining to the disability community that when race comes to play in disability experiences, being a disabled person of color adds another layer of discrimination. Maysoon sad it was very hard to convince people that it’s even more dangerous to be a person of color and disabled and that, as a Muslim-identifying woman she’s dealt with a lot of bigotry in the community. In fact, she was kicked out of the very first CP Facebook group she was in because she mentioned privilege.

Alice Wong, who has spinal muscular atrophy, is the founder and coordinator of the Disability Visibility Project, which promotes disability stories, history, and culture. Wong considers herself a researcher, storyteller, connector, and “digital amphibian,” which she describes as a creature that splashes between online and physical spaces. With Thompson, she is the author of #GetWokeADA26, a report that features the experiences of disabled people of color.

Wong uses the Disability Visibility Project to promote and champion the works of disabled people of color, and to share articles and essays related to disability in the hopes of starting conversations and dialogues. From what I’ve seen, it works. The project’s Facebook page provides a space for conversations that just don’t get to happen in the more visible, mostly white spaces we are otherwise expected to go to for resources. When the film Me Before You premiered, I saw discussion about its ableist nature and harmful portrayal of disability there before I saw it anywhere else. Wong has worked tirelessly to give disabled people of color a voice in the spaces that normally shut us out. She hopes that collecting and amplifying the voices of disabled POC will lead to greater awareness of what happens at the intersection of ableism and racism — including, she told me, the tokenism that can happen when someone is a noteworthy disabled person of color.

“While disability visibility is important, there are real trade-offs and risks to this visibility for marginalized folks. It’s tiring when people constantly ask me for resources or assistance within the disability or Asian American communities to represent some aspect of myself,” says Wong. “The labor and responsibility of representation is very real and a bit unfair when there are so few ‘known’ to the disability community. It’s on them to seek out and understand DPoC (disabled people of color) and to discover new voices and people rather than relying on the usual suspects like myself.“

As visible disabled women of color there are quite a few things that we hope the disability community learns about us. For Wong, it’s an understanding that the disability rights movement’s principles of interdependence, community, and vulnerability look different for disabled people of color than they do for white disabled people — but that’s okay. What isn’t okay is calling someone divisive because they acknowledge these differences. For Zayid, it’s the end of bigotry in the community. Thompson and I agree that the disability organizational leadership needs to step up and support disabled people of color. There are so many of us doing great work and often, we aren’t even invited to participate in their projects and initiatives.

Disabled organizations should be hiring disabled people of color and allowing us to spearhead projects. They should acknowledge when they mess up and give a sincere apology while taking steps to make sure it won’t happen again. The disability community has a long way to go and as we fight for inclusion of people of color in mainstream media, we must remember that the fight starts at home, in this community. If your disability activism isn’t inclusive, it isn’t activism.

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