“I write essays about life with a chronic medical problem,” I tell the editor when we meet at a literary event. I don’t go into the details—that I was born with a neurological condition, hydrocephalus, which is treated with a device called a shunt. Periodically the shunt malfunctions and I get headaches and other strange symptoms that only brain surgery can alleviate. During those times, having hydrocephalus is frightening and painful, but when the shunt is working, as it is this evening at the bookstore, I barely think about it—that is, outside the context of my writing.
“We publish pieces on disability,” the editor says, handing me his card. I thank him and walk away. I don’t want to leave a bad first impression by saying something contradictory.
But I don’t have a disability, I think to myself. Or do I?
A few months later, an editor puts out a call for submissions and specifies that essays by writers from marginalized groups, including people with disabilities, will receive priority attention. I send in an essay describing the parallels between my life with hydrocephalus and a memoir by a writer with a hunchback. In The Little Locksmith (1943), Katharine Butler Hathaway describes how she came to learn that despite her physical frailty and short stature, she could live a happy and independent life.
I identified with Hathaway’s experiences—of feeling that others see you differently than you see yourself, of noticing that the sexual experiences others are having in the normal course of things aren’t happening to you. Hathaway seemed to be a kindred spirit of a kind I hadn’t encountered before. In the afterword to the Feminist Press edition of The Little Locksmith, the late author Nancy Mairs, who wrote about disability herself, called the book “a nuanced inquiry into the social, psychosexual, and spiritual realities of disability, half a century before disability studies emerged as an academic pursuit.” I knew that Hathaway and I both had “lifelong medical issues,” but I didn’t consider mine to be disabling. Mairs’ afterword suggested that disability was what Hathaway and I had in common, that with all the parallels between my life and Hathaway’s, my “lifelong medical issue” looked, swam, and quacked like disability.
At least, that’s how I see it now.
In September, 2017, when I submitted the Hathaway essay, I included the word “disability” in the title and the editor replied that she would read my piece promptly because I was a writer from a marginalized group. But am I? Do I deserve this special treatment? I knew that Hathaway’s story, in which I saw parallels to my own, was regarded as one of disability. I could also see how my work would seem disability-ish: I write about how inherent physical and neurological differences complicate my life and make it more difficult for me to do certain things. (Different from whom? More difficult for me than for whom? These are important questions.) But I’d never thought of these differences as disabilities. While they make it more difficult for me to do certain things, they don’t render me unable to do them.
By the time the piece was published, in late February of last year, by a different editor somewhere else, I’d taken that word out.
But at a writing conference the following month, I attended panel discussions about illness and disability, again felt a sense of identification, and began to wonder if there was an entire group of people like me and like Hathaway and if these people were, in fact, “the disability community,” a term to which the panelists introduced me. A community of potential kindred spirits—and living ones, at that. How could I not explore this?
I know what kept me from exploring it earlier: a sort of internalized ableism.
From my earliest days at school, I avoided kids who took special classes and received extra help and turned away relationships that could have sowed the earliest seeds of community. This ableism came not just from the stigma and isolation that seemed to follow those kids, but also from my notion that, when it came to school, I had to be not just smart but perfect. I couldn’t have special needs or acknowledge commonalities with students who did because I wanted to be gifted and talented and thought the two labels were mutually exclusive. I didn’t allow then for the possibility that a person could be talented at one thing and need extra help with another.
Prejudice, fear, and a lack of understanding tend to go together. I was ableist. I was afraid of disability. I also didn’t quite know what disability meant.
For most of my life, I’ve operated not with an official definition of disability but with an unspoken personal one. Something like: A disability is something that makes the activities of daily life, developed by and for people who are mobile, have all five senses, and are of average intellectual abilities, difficult or impossible without help. Given my prejudices, by that definition, I didn’t consider myself to have a disability.
But the minute I’d reject disability, I’d be flooded with memories suggesting that whatever disability was, it did apply to me. The real estate agent who called me, a few hours after an apartment viewing, to ask if I need a first-floor room; he’d noticed that I was “very careful when I walked.” The neighbor who called me the “poster child” for Special Children’s Friends, an organization with which my mother was heavily involved during its early years. The woman who, at the Jazz Age Lawn Party, interrupted my Charleston to tell me to keep my feet closer together; I knew she was wrong to embarrass me that way, yet it still shames me to imagine that what I’d thought of as my fine-for-an-amateur dancing was so noticeably aberrant.
These are all memories of times that others shook up my view of myself as fitting in, as being normal and living a normal life. But I also have my own caveats: a long list of “buts” and “thoughs.” I’m physically able, but I have hydrocephalus; but I take medicine to prevent seizures; but I have a benign tumor on my brainstem, which, in addition to having presumably caused the hydrocephalus with which I was born, gives me an asymmetrical face, weak left side, poor balance, and monocular vision, meaning I have no depth perception. I’m intelligent, but I process information slowly, take extra time on tests, get lost even with Google Maps. I work and live on my own, but my parents supplement my income. And back when I was a kid, I didn’t go to the “resource room,” where special classes took place, but I certainly had things in common with the students who did—that is, in addition to a school, a home state, humanity. With one student who went to the resource room, and who also tried to befriend me, I shared something quite specific: a neurologist.
Do all of these little signs, all of these exceptions to my claim of being just like my peers—or like the classmates I considered peers—constitute a disability?
The first place I think to look for a definition of disability is the Americans with Disabilities Act of 1990 (the ADA). Modeled after the Civil Rights Act of 1964, the ADA is civil-rights legislation for people with disabilities, making it illegal for employers to discriminate against disabled people and requiring public accommodations, government services (including public transportation), and telecommunications to be accessible. Right at the top, the ADA also defines disability, but does so in what seems to me a very confusing way.
The ADA’s definition of disability can be seen as having three prongs (my word, not theirs). A person with a disability, according to the ADA, has an impairment that “substantially limits one or more major life activities” (prong one); “a record of such an impairment,” that is, of a past impairment (prong two); or is “regarded as having such an impairment” (prong three). When I first read that definition, I don’t know what to think. My medical issues don’t cause me problems on a daily basis and my senses are intact—under prong one, I don’t have a disability. But I do have a history of impairments—multiple shunt revisions, seizures, early years when I had a trach, couldn’t talk, was learning sign language—and there have been many instances when others have regarded me as having special needs. So, by the second and third prongs of the definition, I do have a disability—or so it seems.
My identity seems to shift as I read along, and with each shift comes the uncomfortable feeling of having been wrong.
Is one’s disability really defined by the perceptions of others (prong three), which may be inaccurate? Or by one’s history (prong two), though a past disability may be irrelevant to one’s present capabilities? And though I am fine most of the time, when the shunt fails, I can do little more than lie in bed and wait for surgery. Major life activities—walking, breathing, sleeping, working—are most certainly impaired. In which state does the ADA judge my abilities?
The ADA Amendments Act of 2008 says that “an impairment that is episodic or in remission is a disability if it would substantially limit a major life activity when active.” Further, it specifies that the severity of an impairment should be judged “without regard to the ameliorative effects of mitigating measures,” including medications and prosthetic devices (with the single exception of eyeglasses and contact lenses). Is the shunt a mitigating measure to be disregarded? Because without the shunt, I’d most certainly be disabled; I might even be dead.
To help me answer these questions about the ADA’s definition of disability, I speak to Cindy Tarshish, the manager of ADA Minnesota. Prior to the Amendments Act, if you relied on a mitigating measure, you may not have been considered disabled under the Act; that changed in 2008, Tarshish tells me. So whether the shunt is a mitigating measure seems not to matter, because mitigating measures themselves no longer matter under the Act: it’s the consequences of one’s medical conditions, considered in an active, untreated state, that determine disability according to the ADA. This would suggest that I am a person with a disability as described by the first prong of the ADA’s definition. Yes, I am fine—when I take medication to forestall seizures and anxiety, when I have a working shunt regulating the pressure in my brain. When I’m good, I’m very good, to paraphrase the poem, but when I’m bad, I’m horrid. And the latter is the state in which, under the ADA, one would assess my impairments to decide whether I am disabled.
After speaking with Tarshish, prongs two and three make a little more sense. Through the “regarded as” prong, the ADA protects people from discrimination on the basis of a perceived disability, even if that perception is incorrect. Tarshish mentions the story of an able-bodied woman with a facial scar who was denied the job of hostess at Red Lobster on the grounds that her appearance would be “unappetizing”—that woman would have certainly been eligible to sue for disability-based discrimination.
The ADA also protects those with a history of disability—cancer survivors, for example—from discrimination on the basis of that history (and the fear that it might repeat itself). It also protects those who are associated with disabled people, such as the parents of a disabled child. These protections against disability-based discrimination don’t, however, mean that all these people are disabled or are entitled to accommodations at work.
The ADA does not, in other words, claim that the regard of others can be disabling. Yet the idea compels me, because so much of my thinking that I might have a disability stems from the perceptions of others, and my perceptions of their perceptions. The idea that notions of disability, valid or not, could be the basis of discrimination suggests that disability is a social construct. Offering accommodations out of the blue, as the real estate agent did while I was looking at that apartment, is also a kind of discrimination, which is not to say it’s wrong—but it puts people with apparent differences in a group apart (socially, that is—the ADA doesn’t weigh in here). To the extent that disability is a social construct, I have one.
But disability is more than a social construct; it’s, to refer to the ADA, an impairment that significantly limits one or more major life activities. What distinguishes the experience of a person with a disability from that of an able-bodied person is not just discrimination, but also the disability itself. For example, I have a lazy left eye, one of the ways in which my face is asymmetrical, and people notice it. People don’t know which eye to look at when talking to me, my mom says. But the lazy eye is more than a superficial difference that can inspire discrimination: it has neurological roots and functional consequences—monocular vision and a lack of depth perception. So for that and other reasons, I am indeed “careful” when I walk down stairs.
Originally, I don’t think I have a disability as the first prong of the ADA defines it, yet even that is subject to my doubt. The ADA Amendments Act changed the definition of disability to specify that major bodily functions, including those of the brain, are major life activities. That I have hydrocephalus means that one of my bodily functions, the regulated flow of cerebrospinal fluid through the brain, is impaired. The shunt works around the problem, rerouting the brain’s fluid—but, as every shunt failure makes clear, the problem remains.
If I have a disability under the ADA, then, at least in theory, would I also qualify for disability benefits through Social Security? Though the requirements one must meet to receive benefits from the Social Security Administration (SSA) are quite complicated, it doesn’t take long for me to see that the answer is no: the ADA and SSA view disability quite differently.
By the ADA’s definition, a disabled person could potentially have both a job and a condition that medications or a device, such as a hearing aid, can completely treat. In contrast, by the SSA’s definition, a disabled person has an impairment that, despite adherence to medical treatments, prevents them from working at all or from earning anything more than a tiny income (in 2018, a person earning more than $1,180 a month from “engaging in substantial gainful activity” would not generally be considered disabled). As Avram L. Sacks, an Illinois-based attorney who focuses on Social Security law and is a member of the Special Needs Alliance Advisory Council, explains to me on the phone, “If an individual is able to function once the condition is being treated, then there’s no disability, because the test is not the name of the condition. The test is not having the condition; the test is whether or not the condition functionally impairs the individual so much that the individual is unable to engage in substantial gainful activity.” If an individual is able to function at that level once the condition is being treated, then there’s no disability.
While the ADA disregards mitigating measures, and considers the severity of chronic impairments when they are active, the SSA does the very opposite. For example, I take twice-daily medication for seizures, though the number of seizures I’ve had in my life is probably 10 or fewer. Under the ADA, my seizures would be considered a disability because, when they happen, they impair the functioning of my brain. The SSA, however, generally only considers seizures to be a disability if they occur at least once a month—the details vary depending on seizure type—and “despite adherence” to meds. So although due to my chronic, treatable medical problems, I meet the ADA’s definition of a person with a disability and would be protected from disability-based discrimination at work, among other places, I do not meet the SSA’s definition: I work and earn an income past the defined point of substantial gainful activity, and my medical conditions are chronic and treatable.
But the question of whether I have a disability according to government and legal definitions is mostly theoretical. In reality, whether the ADA and SSA definitions of disability apply to me, personally, is a moot point—I have no employer from whom to request accommodations and thanks to my income and other financial resources I don’t currently need help from the SSA.
To get beyond theory, I contact the Hydrocephalus Association and ask if they could connect me with people who have hydrocephalus and also receive Social Security benefits or accommodations under the ADA. The organization connects me with several adults with hydrocephalus who cannot work and who receive or have received Social Security disability benefits. I find few sources with hydrocephalus who have experience with the ADA, and Cindy Tarshish does not have particular knowledge of how the ADA might apply to people with hydrocephalus—though she believes that, as an impairment of a major bodily function, hydrocephalus would probably be considered a disability in itself. I can’t know how a court might view my medical issues if I sued an employer for disability-based discrimination; only experience could tell.
It’s thanks to financial and medical luck that I can ponder these legal issues with nothing personal at stake. Were I poorer and without parents to help me, I might well meet financial requirements for Social Security disability benefits. Were I less privileged financially I would also probably have an employer, since freelance journalism is not a great way to earn a living. I might, therefore, have reason to assert my rights under the ADA. I likely wouldn’t be writing this for fear that “outing myself” as disabled would, despite the ADA’s theoretical protections, put me at a disadvantage in the job market.
I’m also lucky that my medical issues don’t disable me more. When I was a baby, the doctors were sure I would be severely disabled and told my parents that they should put me in “an institution,” which I put in scare quotes because the phrase to me implies something vague and frightening. I definitely had special needs as a baby. In addition to the shunt, I got a trach because one of my neurological problems was that I didn’t swallow. The trach, which allowed for clearing aspirations from my airway, also meant that I couldn’t talk (air went in and out of the trach instead of in and out my mouth and nose, meaning that it didn’t pass by the voice box). My mom likes to say that she had three kids: me, my trach, and all of the equipment that accompanied the trach. That’s why, when other kids were starting to talk, I was starting to sign (“more crackers, please”). But I didn’t require this level of care forever, or even for very long. At two I got a fenestrated trach, which had holes in the top so that air would reach the larynx when I forced it in that direction by covering the trach opening. Finger over my trach, I became quickly voluble; at three, the trach came out altogether and I was left with my unusual, yet completely functional, voice. I learned to swallow. As for the shunt: I’ve had five shunt failure episodes during my thirty-four years, some requiring multiple surgeries, called shunt revisions. Each shunt failure is an ordeal.
But, of course, “it could be worse,” to use a stupid cliché—a different life is not better or worse, it’s just different, with endless dimensions beyond neurology; all I mean is that neurological problems could complicate my life more than they have so far. Some people with hydrocephalus have needed more frequent surgeries than I have. Some people with hydrocephalus—because of the frequent surgeries, because of brain damage, because of whatever neurological problems, such as my tumor, may have caused the hydrocephalus in the first place—cannot work at all. In other words, some people with hydrocephalus cannot perform “substantial gainful activity” and, therefore, need Social Security disability benefits.
I speak with one woman who acquired hydrocephalus early in her life and is just a few years older than I am. She has had roughly thirty revisions and receives Social Security disability benefits because she can’t work. She also volunteers at a swim class for disabled kids and describes herself as “happily single.” I speak with a mother whose twenty-year-old son suffered significant brain damage because of his hydrocephalus and has had over 100 shunt revisions; the son has a 50-word vocabulary, an untestably low IQ, uses a wheelchair, and has received Social Security disability benefits since he turned eighteen. He also works out four days a week, rides horses as part of an equestrian program for people with disabilities, and plays with his dog.
During my last shunt failure, this past April, I have three shunt-replacement surgeries because the first two shunts quickly fail. I’m in the hospital nearly a month, much of that time spent in the ICU. It’s a pretty bad situation, relative to those I’ve been in before. But the current shunt, the result of surgery number three, seems to be working well.
Since I’m not currently asking for disability benefits or accommodations, the question, “Do I have a disability?” truly is a matter of identity. Do I identify as disabled? The answer in my mind is still maybe, or sort of, or depends on how you look at it—that is, it’s a matter of how you define disability. But what I do recognize as true is that I am like Hathaway, that I am like some of those students who took special classes and whose similarities with myself I rejected decades ago. Does it matter if I call what links us disability?
When it comes to people taking comfort in shared experiences, I don’t think the name for that unifying element matters. But when it comes to taking advantages of opportunities reserved for marginalized groups, whether or not to call oneself disabled is a more serious question. It matters because when a publication offers demographic boxes as part of its submissions system and states that it wants to publish more writers from marginalized demographics, to check the box when you don’t belong to the group is to gain advantage by fraud. I fear that choosing to identify as disabled, with the implication that I could also choose not to, is a privilege like that of a white person choosing to use an Asian pseudonym when submitting a poem.
But what separates me and my notion of identifying as disabled from the white person pretending to be a person of color is that I have indisputable medical problems that I can’t change. Though I can choose whether to call those medical problems disabilities, that’s the extent of the choice. Unlike, say, Rachel Dolezal, I’m not trying to join a marginalized group to which I don’t belong. You can’t choose to join a marginalized group, anyway, any more than you can choose to be born with hydrocephalus. Other people marginalize you or they don’t—if they don’t, you’re lucky.
Throughout most of my life, I’ve been more akin to the person who is already in the group but doesn’t realize it. And though I can’t choose whether or not to be disabled, I am now, in a very public fashion, choosing to identify myself that way.
The stigma of disability comes from being seen as different from mainstream social norms and ideals; it can isolate one from people who see that difference as a negative. But to self-identify as disabled isn’t to isolate oneself, it’s to join a group: the disability community. When I read personal essays and memoir by people with disabilities, I tend to think not, these people are different, but, oh my gosh, these people are like me! Experiences that isolate a disabled person from able-bodied peers can be the very same ones that bring disabled people together—to some extent, it is the marginalization that creates the marginalized group. It’s what connects me and my experiences to Hathaway and hers. But not just to Hathaway. Also to Keah Brown:
“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.”
Also to Nicola Griffith:
“I have . . . regarded my MS and its consequences as a tedious, time-consuming thing Over There, separate from my real life. My illness, I reasoned, was a personal difficulty that took a lot of bandwidth to mitigate; why give it any more attention than necessary?”
Also to Esmé Weijun Wang:
“I am her, but I don’t want to be her . . . . It didn’t matter how pulled-together I seemed when, for example, I was crossing campus, ducking and dodging specters that no one else could see. I knew that I looked crazy, and that no amount of snappy dressing could conceal the dodging. Because such movements were a necessary concession to my craziness, I responded by trying even harder to seem normal when I wasn’t being assailed by hallucinations. I went dancing. I ate potato skins in Irish bars and pizza joints. I did all the ordinary things I could think of.”11In the first sentence, Wang writes of her reaction to a woman with schizoaffective disorder who identifies with Wang, though Wang, who has the same condition and is visiting the mental health clinic not for treatment but as an invited speaker, does not want to identify with her. In the sentences that follow, Wang describes the anxiety, caused by the fear of standing out, that pervaded even everyday activities when Wang was a college student who had hallucinations. Both sentences highlight the discomfort with disability that even disabled people sometimes feel and the hypersensitivity—even when doing “normal” things—that comes with having a health condition that can feel like a chronic abnormality.
When I read these kinds of stories by people who identify as disabled, in which people talk about things that so often go unspoken like guilty secrets, I feel less alone, connected not just with other disabled people but also with people who share another identity of mine: writer.
There’s a hashtag that one can use to find other disabled writers and people who write about disability: #CripLit. The hashtag grew out of a Twitter chat of the same name hosted by writers Nicola Griffith and Alice Wong. When I think of “the disability community,” that term I picked up at the writing conference, I imagine the group of people who use the hashtag #CripLit. In reality, self-identified disabled writers on Twitter are a subset of all people with disabilities, and common characteristics, in themselves, do not a community make. That said, the sheer number of people out there on Twitter who use the hashtag does inspire a sense of solidarity or kinship in me.
The more Tweets I read that clamor for writing about disabled people by disabled people (#OwnVoices), the more I find myself wanting to participate in the discussion, to add the hashtag to my Tweets, to say, “Hey, I’m creating work of the sort you’re saying we need more of.” But are my essays #CripLit? That goes back to the question of whether I identify as a #Crip.
Now, I think I do. As a kid, I felt that being labeled a person with special needs would have negated my strengths, toppled me from my pedestal, rendered me imperfect. It’s just not true. Needing extra help in one area has no bearing on one’s skill in another. Going to speech therapy in high school, for example—I was offered it, but said “no thanks”—wouldn’t have made me a poorer student, wouldn’t have somehow canceled out my talent for, say, learning French. I have always been imperfect—not because of my medical condition, but because perfection is impossible, subjective. Recognizing my weaknesses has made me less of a snob and slightly less sensitive. Now when I face criticism, rejection, or realize a mistake, it’s not a flaw on a once-immaculate canvas—it’s just another brushstroke.
Despite trying to see myself from above, I’ll never really know how I seem to other people, and that’s humbling. While reporting this piece, I ask a few people if there is anything they notice about me that makes them think I might have a disability. The answers are unanimous, and all mention something that hasn’t occurred to me at all: not my body, or the somewhat raspy sound of my voice, but my speech patterns.
“It's not that you speak incorrectly,” says my friend Mo, who, during this same interview, tells me about her life with Tourette syndrome. “But you just have a different cadence . . . more like a pause and rhythm to your speech that's a bit different than what we're used to hearing usually,”
Esmé Weijun Wang, who speaks with me on the phone about being a disabled person of color, tells me that it’s hard for her to forget what she knows about my medical issues but that, “If I had not known any of that, maybe your speech pattern would have given me a clue.”
Now that it’s been pointed out, I realize I do stop and start and backtrack and qualify. When I go over recordings of interviews I’ve done, I prefer to fast-forward through the parts where I’m the one talking. Yet I didn’t realize my speech was so different from that of someone who seasons sentences with “like,” “I mean,” and “fuck.”
I guess it is. There’s this whole other weakness I didn’t know I had. How many more might there be?
I can’t yet say how identifying as disabled has affected my life. I won’t really have done it until this essay is published and, even then, it’s not as if publication is going to flip a switch and make me a new person. “Joining” the disability community is not an instantaneous thing, either. As Wang tells me, “I did not particularly feel trepidation regarding joining the disability community, but I also find the phrase ‘joining the disability community’ or ‘joining’ any community to be sort of strange. When I hear that phrase, it makes me think of, like, signing up in a big book—putting one's name down in a registry, or something much more concrete than what it is in actuality. So if ‘joining’ the disability community means interacting with other disabled people and advocating for oneself and other disabled people, then I suppose that no, I haven’t felt trepidation or hesitation about that.”
I do, however, still feel trepidation about what I think of as “coming out” as disabled. I fear that disabled people might see me as trying to exploit a marginalized identity; I fear that drawing attention to my weaknesses might make me the target of ableist discrimination.
At the same time, the more I’ve explored my medical issues, in part by writing about them, the more grounded I feel in reality; no longer do the difficult parts of my life feel disconnected from the narrative I tell. No longer do I have a secret that distances me from others.
Last April, I posted Facebook updates throughout my shunt failure. During previous hospitalizations, I’d just disappeared without a word. This was also my first shunt failure with a smart phone. It was comforting to see people’s likes and comments and to know that they knew and cared what was happening to me. That the source of my sickness was a rare medical condition with complications on the side did not seem to affect their reactions, and that was a relief. It simplified everything: either I felt better, and that was good, or I felt worse, and everyone hoped I’d feel better soon. It was also a relief to be open with so many people about my hydrocephalus, to drop the euphemisms, to stop fussing over who knew and who didn’t, to accept that, in the future, anyone who became my Facebook friend would be able to see a photo of what I looked like in the hospital when I had a wire coming out of my head.
I looked better. I looked happy. I was, indeed, feeling better.
Fact-checker: Rhiannon Russell