Why We Still Need Literary Spaces for Disabled Writers

In spring of 2012, I was preparing to graduate with my M.A. in English. I was teaching with a respected professor and touching up my first real CV. Terrified of the great blankness that would follow graduation, I planned to teach, but I had no idea how I would continue to meet intelligent and fascinating friends. My colleague passed along a call for student essays on the experience of disability, and I accepted — just so I’d have something to occupy those nebulous weeks after graduation.

I worked on the essay, an exploration of how I came to accept my huge dark glasses, and sent it off. I called it “Shades of Shame.” It was the first piece I ever sent out, the first to be accepted.*

Though I had started this blog a few months earlier, I still couldn’t believe that strangers liked my work. I had always written stories and shared them with friends, and I had done well on school essays and presentations. Friends liked my work because they liked me, right? Teachers liked my work because I was passionate about the topic and I followed the directions. Audiences liked my presentations because I enjoyed speaking.

By autumn of 2012, I was teaching my first writing courses and coping with the death of a close friend. I responded to another essay proposal, which led to my piece “Surprised by Disability.” This essay ran in a special issue of Narrative Inquiry in Bioethics, a journal published by Johns Hopkins University. The issue’s theme was “living with the label ‘disability,'” and my essay described the visual rules used to judge abilities and disabilities — rules even invoked by blind people. Again, I was surprised to be accepted, but I felt a greater measure of confidence: I had strong opinions on labels and terms. The acceptance made me crave a platform — the value in having a space where I could speak and others would listen.

In March of 2013, my first published poems appeared in Wordgathering: A Journal of Disability Poetry and Literature. For months I wondered whether I had just gotten lucky. I wouldn’t feel like a real writer until I had published more. After several positive interactions with editors, I realized that this strategy was a harmful lie: I was using publications to calculate my value.

As I began writing about classical music for Minnesota Public Radio, I still felt a powerful hesitation. Moving beyond disability-specific arenas, like Wordgathering and Breath & Shadow, I worried over how to market my blindness. My first article for Classical MPR described my experience of opera with low vision — a pitch I chose for its novelty. That novelty was my ticket into mainstream venues: I had to present a kind of blindness that didn’t scare people. A sense of disability as another (somewhat fascinating) way of life.

For MPR, I wrote about introducing my guide dog to all my musical activities. For a feminist anthology, I wrote about the challenges of being a young, visibly disabled teacher. But every piece that went beyond the safe circle of disability journals held concessions: the little explanations tucked into a line of dialogue, the right terms dropped in inconspicuous places. I had to tell my audience I was a blind woman who didn’t see my disability as a medical defect, but I couldn’t preach.

As I continued to write and teach, I recognized that my postgraduate fear had been refined. Instead of fearing social distance in my personal life, I was now afraid of being shut out by future readers. I was afraid that they would pick up a poem about transcribing love letters in braille and say, “I don’t get this. What’s a Perkins?” I was afraid that they wouldn’t relate to my joy at hearing other canes tapping down the sidewalk.

That fear turned me against myself. If I was really a good writer, my poems couldn’t exclude nondisabled readers. The power of my language would speak to them, transcend all misunderstanding, and help them feel comfortable sharing my experiences. If I was good enough, disability wouldn’t come between us.

In disability theory, this ideal is often called the “supercrip”: the disabled person who strives against all the odds to overcome their disability, struggling and even harming themselves just so others won’t be uncomfortable. Even though I was a sensible activist in my work life, I was supercripping my writing life — taking full responsibility for my readers’ reactions.

I thought readers would refuse to engage with my work not because they were bad people  but because of the literary climate. In most stories, usually written by nondisabled people, disability rendered a character novel, tragic, or strictly medical. Disabled characters were saints: their bodies had failed them so they longed for the soul-world. Disabled characters were freaks: their bodies were anomalous and impossible to understand. Disabled characters were tragic: pilots who couldn’t fly anymore, patients whose lives were over, legendary ballerinas now in wheelchairs.

Disability ended stories. It did not begin them. So work that addressed disability, or work by writers with disabilities, had to dance a special jig just to be considered. And that’s how commercial pressure works on writers, even when we’re not being paid.

Such pressure made me question the value of my own experiences. If I wrote about a Perkins brailler, did I have to say “brailler”? What if “braille typewriter” messed up the meter in a poem? Maybe I shouldn’t say Perkins at all. Maybe I shouldn’t say braille.…

Writers fear one thing above rejection: self erasure. The impulse to delete everything I’ve just typed, the voice that says, “No one wants to read about that.” Self erasure is enough to make a writer stop writing — and feel entirely justified in doing so. It wears away every good feeling, every hint of inspiration, every search for a pen or a keyboard. It leaves the writer hollow.

Maybe other writers were born with the strength to fight such erasure, to insist on the value of their perspective. But I had to learn this skill, and I needed mentors to help me find it. From the colleagues who encouraged me to submit to the first editors who accepted my work, I borrowed confidence. When one editor asked me to contribute to a special issue, I snatched up that feeling and planted it somewhere deep.

My salvation came in community. I could submit work to a few places committed to disabled writers. At these journals, the editors had crafted a powerful trust with their readers and their writers. I didn’t feel compelled to footnote each experience, to clarify every nuance. I didn’t have to define braille or tapping canes or the strange play of light that is my vision. I could give myself completely to my art.

Now I sense the weight of what I bring to these platforms. Disabled writers, editors, and readers have set up spaces where we can be heard, where our stories of disability can ignore the dubious authority of precedents. These spaces are necessary playgrounds for all writers, emerging and established. We need room to imagine without erasure.

 

* This essay is forthcoming in the anthology Barriers and Belonging: Autoethnographies of Disability from Temple University Press.

 

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October Interviews: Krista from FSCJ

Krista Waters, age 29, is a DeafBlind Human Services major at Florida State College at Jacksonville. She has found her passion working with other disabled people, and she currently holds two positions in disability services organizations. She enjoys discussing assistive technology, self-advocacy, and accommodations for disabled students and employees. She agreed to talk with me about her academic experiences.

Why did you choose to attend Florida State College at Jacksonville?

I chose this institution because the disability services are incredible. The staff really embraces the students they are in charge of educating.

What is the most significant access issue you’ve had in college? How was it resolved? Was this solution ideal?

I would say the most difficult access question has been access to materials in a timely manner. Because I am visually impaired as well as hearing impaired, things can take a while. I receive syllabi in advance, handouts in advance if available. However, computer software still leaves a lot to be desired. Its not always accessible for people who use screenreading programs like JAWS. I’m flexible though. I’ve realized when I’m fighting for accessibility for myself, it’s not always about me in the long run. It’s about my fellow students and peers as well.

If you could implement training for faculty or staff, what skills or concepts would you emphasize?

I would emphasize that all students are different. Just because you have had one blind student does not mean the second or third blind student will require the same things. Your student comes first, then the disability.

How do you judge whether a professor will be a good fit for you? What clues in the syllabus or in their personal communications let you know that they’re willing to collaborate with disabled students?

Whether a professor is a good match for working with our college’s disabled population is based on a number of well-defined factors. First of all, a lot is based on the student’s first meeting with the professor in question. Does the student email and ask for a meeting (something that is highly recommended)? Does the professor respond in a timely manner? Does the professor seem interested and open to your request for a meeting? Are you clear about your disabilities? Does the professor ask good questions related to you being in this class and how to make the environment as conducive as possible?

What’s the most satisfying project you’ve completed during college? Why do you feel this way about it?

The most satisfying project I’ve performed in college is my Cold War presentation in my American History class. I’m a quiet person by nature, especially in the classroom environment. I have difficulty speaking up in the classroom, and the professor in question took it upon himself to ensure I became comfortable. He did not ignore me; instead he engaged me. I did my presentation complete with PowerPoint.

What was the most challenging college course you’ve ever taken? Why was it so challenging?

I think the most challenging class I’ve taken thus far is my Integrating Educational Technology class. This class was all lab-based and completely 100% visual. As a visually impaired person, I like to be as independent as I can, and this class challenged my sanity.

What advice would you give to disabled students entering college for the first time?

I would say talk to other college students who have disabilities. Know what your rights are and understand the terminology related to disability accommodations. Try first and if you do not get anywhere, then ask for help. Talk to your professors: open and honest communication.

I Ask My Poetry

The young writer struggles with self-definition. So many incredible reputations hover above us, casting sparks in all directions. Every established literary presence is crisp and luminous, an identity in complete control of its own labels.

So I ask my poetry for this control, and it withers. I find I possess nothing worthy of a poem. What could be poetic about my unestablished self? About my identity testing its limits?

I ask my poetry to be perfect, to appeal to everyone, to help others feel what I feel when I read Rilke. Rilke advises his young poet: “If your daily life seems poor, do not blame it; blame yourself, tell yourself you are not poet enough to call forth its riches; for to the creator, there is no poverty and no poor indifferent place.”

I ask my poems to be round and lively, filled with knowledge that transcends my individual experience. And as I reach for this transcendence, this selflessness, I realize just which parts of my self I am sacrificing.

I am concerned that others will read my work and see only disability: a dismal vision that makes them turn away rather than turn toward me. I am concerned that their fear of blindness—so widespread in common culture—will tell them, “Close the book, and it will never happen to you.” I worry that any “blindness poems” that don’t offer some nugget of nonvisual bliss will tap into the well of pity carried by people who don’t really know me.

“That must be what it’s like to be her. Poor thing.”

So I ask my poetry to silence the part of myself that helps me interact with the world. I ask my poetry to censor disability so that it will appeal to more nondisabled readers. I cut off part of myself—and then I’m surprised when my poetry wants spirit and individuality.

I didn’t realize how thoroughly I’ve been silencing myself. My prose is flowing smoothly, but I’ve only written 5 poems this year. Last year, I wrote 67. In 2013, I wrote 97. The prose is steadily coming, but the poems are being choked off. I’m telling myself the usual things: I’m not in the mood to write poetry, not all those poems last year were good, numbers don’t mean much when it comes to Art.

But inspiration only works if you value the craft that asks for it.

A year ago, I wrote an essay that helped me define myself as a poet. The essay happened in the midst of April—I was celebrating Poetry Month by trying to write some kind of poem every day. I was playing with forms: pantoums, villanelles, sonnets, sestinas. The exercises and the essay worked on paper. So I published the essay,  framed the thoughts, and forgot to engage with them.

About a month ago, I applied for a slot in a series of local readings that will occur in November. I offered myself as a poet whose poetry would discuss “writing as embodiment and sensory experience”—a neat way of saying “blind poetry” without using the word. I didn’t see the fancy words for what they were: a cloak. Just in case the panel of judges would freak out over seeing “blind” on the page.

I wanted to read my poems instead of my prose because they are generally shorter and won’t provide as much of a visual challenge. I’ve never felt overly confident about my ability to read aloud.

My poems don’t mark me as a blind poet in as much as my essays mark me as a blind writer. My poems focus on minute experiences, rarely stopping to explain that they were written by a blind woman. But my essays are longer explorations of important aspects of my life: music, teaching, disability, dogs. In my essays, I don’t avoid the blind label: they flourish because of my perspective.

So why do I hold poetry to a different standard, a standard of erasure? I can puzzle out a few reasons. I’ve met few blind poets on the page, though of course they exist. I even have several works by blind poets sitting on my poetry shelf.

But poetry hinges on a paradox. We expect it to bloom with human experience—particular, poignant, real. And at the same time, we imagine that such a high and beautiful art must come from the minds (not bodies) of high and beautiful people. Prose seems to us the writing of everyday life—even if this is an unfair judgement. Prose can certainly be beautiful, graceful, evocative. But prose is the place where you discuss how to clasp the belly-strap of your guide dog’s harness; poetry is the place where you describe the wild warmth of meeting his large brown eyes—perhaps the first pair of eyes you’ve ever been able to meet.

It is an unfair binary that segregates these two genres, and practicing this binary has helped me to make war on my writing self. I didn’t see it until I read it in a piece by Steve Kuusisto, a blind poet: “Its possible to have a disability and live your life pretending you don’t have one. Plenty of people have done so. But getting away with this charade in literary terms means the imagination has been suborned—bribed—you’ve tricked yourself into thinking there’s a pot of gold that will be yours but only if there isn’t a hint of physical difference in your work.”

I am an advocate, an activist, a scholar, a teacher. I contemplate all day, and often into the night. I never imagined I could be so thoroughly tricked by the same myths that silence other disabled poets. I’ve been helping to sequester my own experience, and effectively telling others that it is nothing of value—all to avoid being misunderstood, pitied, alienated.

Kuusisto echoes Rilke’s Letters to a Young Poet, saying:  I’m a poet who not only admits the defective body into literature—I think the imagination is starving for what that damned body knows.” But the difference is, he’s talking about me. I didn’t know Rilke was talking about my experience, too. And I couldn’t ask.

I could’ve questioned poetry itself, but I didn’t have the courage or the imagination. If I didn’t ask for admission, I couldn’t be turned away.

I’m going to stop asking my poetry not to come.

I’m asking all poetry: Are you talking to me?

Surprised by Disability

This essay appeared in the Winter 2013 issue of Narrative Inquiry in Bioethics, a journal published by Johns Hopkins University. The issue’s theme was “living with the label ‘disability.'” As the issue is no longer in print, I am sharing the essay here.

*   *   *

Today I am meeting Diana, one of my young blind students, for coffee. Soon she will enroll in our summer program that teaches blind teenagers independent living skills and self-advocacy. Her teachers explain that she has prepared questions for me.

“So,” Diana begins, as we follow the uneven sidewalk toward the restaurant. “What would you do if you wanted to go outside without your sunglasses?”

I can guess why she poses this question, but I conceal my theory for now. Instead, I smile and adjust the large, dark sunglasses that fit over my regular glasses. “Why would I want to do that?”

“I don’t know…Just say, you wanted to,” she finishes diffidently. She walks slightly in front of me, the familiar sound of her white cane scraping and tapping against the bricks laid in the sidewalk. I rarely travel with other blind people, so the sound of her cane comforts me.

“I’m so sensitive to light that I’d be miserable without my shades,” I explain.  I’m careful with my tone here. Like me, Diana is unable to read facial expressions—she listens attentively to vocal cues. She is a smart thirteen-year-old, and she will notice if I start to sound preachy.

“Okay, so what if you wanted to go out without your cane?”

I’m ready for this one: “Diana, my cane keeps me safe. I’m happy to have it with me.”     The cane alerts me to vital environmental changes, like the textural difference between sidewalks and streets. Unexpected curbs, sudden stairs, perilous signposts, and wayward children become apparent to me through the white cane. It is as if the cane helps sketch the boundaries around me; its contact with objects creates a vivid spatial awareness.

I sense that my responses fill Diana with a mixture of defeat and frustration. I have not validated her reticence to use the shades or cane. Nor have I handed her a rhetorical placebo, a catchy phrase she can pull out whenever she feels uncomfortable with her disability. Resisting her white cane and dark glasses, she loathes the idea of looking different. Though neither of us can see others staring, we feel the judgment and pity—and the occasional sense of wonder from those for whom we’re still a novelty, the ones who want to point and exclaim, “Look Ma, a real blind girl!”

Both Diana and I carry emblems of blindness that are easily recognized from a distance—visible signs of disability. Other disabled people can “pass” as nondisabled. If they don’t use wheelchairs, crutches, canes, dogs, or braces, no one will know that they have disabilities. Hence, the disabilities that don’t require visible accessories are called “invisible disabilities”—a term that strengthens the connection between disability and appearance.

Diana doesn’t want to “look” blind. She wants me to give her an out, to divulge the strategies I’ve devised for leaving the house without my cane and shades. Underneath her casual questions lies the prevailing obsession, “What’s the secret to looking normal?” As a successful blind woman, I must have it figured out. The secret, Diana, is easy to articulate and difficult to enforce. I can write it more readily than I can live it.

The secret begins with  a very broad spectrum of acceptance. First, I must accept myself as a blind woman who needs a cane and dark glasses to travel in safety and confidence. Then I must accept that these mobility aids are uncommon and highly visible—which means that, almost every time I go out, people will approach me. And lastly, I must accept that the attitudes of others do not determine who I am, that their idea of blindness does not define my experience of it.

The white cane was not always easy for me to carry. Though I have been legally blind from birth, I did not use the white cane in my daily life until high school. Before my freshman year, I could pass as nondisabled. At high school, I found myself on a large, crowded campus with only six minutes to travel to and from classes. The cane supplemented my limited visual fields, letting me know about approaching stairs, curbs, potted plants, and people. In a blink, I was visibly disabled, consistently referred to as “blind” or “legally blind” instead of the mild and familiar “visually impaired.” With the cane, this new “blindness” brought me braille and the dark glasses. As I picked up the cane, put on the shades, and placed braille labels on all my textbooks, I began to learn that everyone saw my blindness differently.

When I became visibly blind, strangers started to approach me with more regularity. I received unsolicited comments that revealed the discrepancy between who I was and who everyone thought I should be. Unable to mask their disbelief, people said, “You don’t look blind!” or “If you hadn’t used the cane, I’d never have known you were blind.” I wondered what it meant to “look blind”—did they expect me to stumble, to spill food or drinks all over myself, to grope for the objects around me? Absolutely they did. Some exclaimed, “Wow, you dress so well for a blind person!” while others consoled, “Don’t worry, I run into walls all the time too!”  (For the record, I rarely run into walls. That’s what the cane is for.)

To outsiders observing the blind experience, blindness is signified by shuffling feet, stained clothing, wild hair, and a general lack of confidence. A blind woman should look lost, frail, and naive. No wonder Diana and my other students are afraid to look blind; they know the stereotypes and dread fulfilling them.

The prevailing attitude is that blindness, and any other physical (visible) disability, indicates an eternal deficit—a life clouded by insurmountable tragedy in which the disabled person can never accomplish her goals and ambitions. It’s not difficult to imagine the heart-wrenching scenes created by sympathetic ableism: the wheelchair user who dreams of being a ballerina, the blind man who wants to be a neurosurgeon, the deaf person who longs to hear music. Often, popular ideas about disability create images of disabled people whose genetic lottery pits them against impossible desires. And the righteous sympathy that nondisabled people are supposed to feel for these tortured “innocents with disabilities” emerges when real nondisabled people encounter real disabled people.

Called slippage, this attitude insists that the disabled person should be inept at all tasks. Slippage is the idea that an impairment in one area, such as blindness, causes all other abilities to deteriorate. Perhaps this is why some people choose to speak to me in loud voices, slowing their words, while others seem amazed when I move without encumbrance. Because I carry the cane, the performance of routine tasks—swiping my debit card at the grocery store, tying a scarf around my neck, or walking down a hallway—wins me the most effusive praise. This problematic attitude moves indiscriminately among disabled and nondisabled people. Even disabled people can believe in their own incompetence.

My experience with blind teenagers shows me how easily they internalize the cultural attitudes about disability. On the first day of our summer program for blind teens, I stood in front of the class and introduced myself. I said that my name was Miss Emily, that I had my Master’s in English, and that I enjoyed singing and cooking. I added, “I’m also blind. I have some vision, but I use a cane.” On nearly every day of the six-week program, I walked to students’ desks, using my cane, and sat down, folding the cane. Every blind person recognizes the familiar clicks of a cane folding or unfolding and the subtle pull of the bungee cord as the user slips the loop over the folded segments. So, imagine my surprise, when in the following weeks, my students exclaimed, “Hey, you use a cane?!”

Their disbelief communicated many things to me. They couldn’t believe I was blind; they were surprised by my disability. I wanted to know what they expected from a blind person and what made me so unexpected. Did they expect never to find a blind woman in the teacher’s role, speaking authoritatively? Did they never expect a blind person to sound confident, to reprimand their bad posture, to know when they were working or slacking off—as I did?

Like my students, Diana acknowledges that the label of blindness conveys a more-than-visual deficit. Many have accepted the message broadcasted by the sighted world: impaired vision means impaired judgment. My students are in the process of learning the power they can exert over their own labels. I want Diana to understand this power: the white cane does not represent one idea of blindness—it signifies all ideas of blindness. Diana has the unique power to embody blindness for others, and she can decide what kind of blindness it will be. I want her to know that she can use her cane and shades in innumerable ways—as implements of independence, as shortcuts to the assistance she needs. I decide to tell her the following story.

On Friday afternoon, the tutoring center is noisy and crowded. Since our official tutoring hours have finished, the peer tutors gather for our monthly training, queueing by the sign-in computer. I thread through the lobby, my white cane catching between the thin chair and table legs, and walk toward the computer. I’ll ask for help signing in as I do every time I clock on and off; unlike my personal computer, the sign-in computer isn’t equipped with assistive technology. I stand near the computer, waiting as the tutors in line ahead of me sign in. I begin listening for familiar voices.

“Hey, do you need some help signing in?”

The voice belongs to a dark looming shape that has just appeared on my right. I look up to see a broad-shouldered guy in a dark shirt. His facial hair, contrasting with his skin, makes it easier for me to find his face. The friendly voice and the eagerness to assist make him familiar to me. “Hi, Patrick! Sure, could you type in my ID?”

He obliges, holding my cane and purse while I enter my password. He walks with me into the meeting room, where he helps me find a seat among the indistinguishable tables and chairs. Unable to identify colors by sight, I can only attest that the low-contrast hues of tables, chairs, and carpet make the room a challenging place to navigate. After helping me find a seat, Patrick retreats to his customary place at the front of the room, where he interprets for our deaf tutors.  When I stand up to avail myself of the refreshments, Patrick meets me at the snack table. “What would you like?” he asks, offering me a plate. He narrates the contents of the refreshment table and puts the requested items on my plate. Again, I haven’t asked for his help, but I appreciate it.

As he leaves, I marvel at two things: how quickly he spotted me and how readily he assisted me. Technically, Patrick isn’t at the meeting for me—and that makes his attentions seem especially considerate. Unable to ignore the graceful and unexpected help he gave, I begin to analyze the circumstances that brought Patrick to my aid.

I reason that Patrick must have seen me come in. Among the tutors, I am the only one using a white cane and wearing dark glasses. Because of my extreme sensitivity to light, I am also wearing a gray cloche hat with a bow. Add that to my dark purple coat, and I suppose I become pretty visible. So, Patrick spotted me readily, and, because of our long acquaintance or his own personal merits, he came over to see if I needed help.

Patrick doesn’t see the cane and dark glasses as signifiers of eternal deficit. His offers of assistance are kind, even-keeled, and respectful. He doesn’t patronize, snatch items out of my hands, or insist on helping after I’ve refused assistance. He respects my agency, my ability to know what I want and need. In essence, Patrick lets me define myself. Perhaps because of his work with disabled people, Patrick has come to understand the absurdity of the stereotypes. Patrick responds to the needs I voice, rather than the issues he perceives. Through these interactions, I remember that I experience disability on my own terms.

To navigate the language of disability, a disabled person must develop a resilience to the commonplace reading of the terms. Instead, she must advocate for the signification she desires. Accepting the labels of disability and blindness signifies my commitment to expanding the space around such labels.

My letter to the Purdue OWL coordinator

Good evening, [Moderator],

My name is [Modwyn], and I’m teaching a business writing course at [my university]. My students are beginning a unit on appropriate language use, and I’m directing them to the OWL’s excellent entry on this topic.

While reviewing the entry on stereotyped and biased language, I couldn’t help but notice the omission of any language relating to disability. As a disabled writer, I’m well aware that the language used to describe disability is highly contested among disability rights activists and scholars. Though members of the disabled community may not unanimously vote for the same terms or the abolishing of person-first language, I can safely say that a list of offensive terms definitely exists. I bring this to your attention because mainstream sources often employ and laud these terms: “differently abled” is a fine example.

I imagine that adding disability to the categories already listed on this page would be an ambitious project, but I believe it’s a worthy one. Many students may find themselves writing for disability services organizations or medical organizations that regularly address disability and disabled people in less-than-human terms. Many professors who frequent this page may realize that the commonplace language of disability – so rarely chosen by the people it discusses – is just as inappropriate as the linking of intelligence and hair color. Even a short paragraph addressing some of the flagrantly passe words and phrases would be a gesture of inclusion to any reader connected personally or professionally with disability.

Thank you for maintaining these excellent resources and helping us share in the delight of teaching writing.

With best,
[Modwyn]

Interview: “Dialogue on Blindness and Writing”

With other disabled writers, I participated in an interview for the September issue of Wordgathering: A Journal of Disability Poetry and Literature:

“Jill Khoury, Emily Lund, Emily Michael and Kristen Witucki are four writers whose work in poetry and fiction has openly addressed issues of physical disability. Wordgathering invited them to take part in a discussion surrounding issues of craft and publication for writers with visual disabilities.”

Read the full interview here.

Why Identify?

When I introduce or identify myself as a disabled woman, I often encounter surprised reactions. People frankly reply, “I don’t think of you as disable”—and why would they? For most nondisabled people (that’s “able-bodied” people in outdated lingo), the word “disability” summons a troupe of negative conditions. Suffering, impairments, trips to the doctor, the inability to hold a traditional nine-to-five job, designated parking spaces (that may or may not be the best ones on the lot), and inspirational Lifetime movies—these are the average pieces of the disability  word cloud. For those whose lives are untouched by disability, there is little incentive to see disability and its bearers in a different light.

However, once you “cross over” and become a member of that often-pitied, frequently misrepresented group called “the disabled,” your perspective on disability might change. Depending on how disability affects your life, you may start to rethink the language that you use—and critique the language others use to describe you. Perhaps you’ve lately acquired an impairment or condition that allows you to come among our ranks. Or maybe you’ve been disabled for years, but you’ve been hiding out with the “normies” (another term for the nondisabled). Attempting to conceal a disability and appear nondisabled is called “passing.” Successfully passing as nondisabled can be more feasible or totally impossible. Since I am a blind woman who employs a cane and dark glasses to safely navigate my environment, passing is not a practical option for me.

So, if taking shelter under the colorful umbrella of “disability” only broadcasts a swirling mass of negativity, why would anyone choose to identify as disabled? Wouldn’t disabled people prefer some euphemism, like “differently abled” or “physically challenged”? Why choose a term that only makes nondisabled people uncomfortable?

Under the umbrella, I understand the entire disability word cloud.

For disabled people, “disability” does not connote only suffering, loss, envy, and despair. Disabled people do not spend all their waking hours gazing longingly at the nondisabled counterparts who can perform the tasks that disability has complicated. Our lives are not Lifetime movies.

This is not to say that we don’t have our moments of intense suffering, pain, and frustration. I experienced my most recent feeling of “sight envy” at my sister’s wedding. Everyone present was torn between two incredible visions: my sister coming down the aisle, beautiful and smiling with a huge bouquet of yellow tulips—and her new husband, elated as he watched her approach. In such an intense moment, my low vision excluded me on two levels; I couldn’t see the joy that the bride and groom independently carried, and I couldn’t witness that joy multiply itself when they saw each other. It was a visual exchange that I knew I’d never share—the “first look” that characterizes the wedding experience. I felt deeply separated from the delighted onlookers in this scenario. I’ve since thought of ways to adapt this experience to suit my own abilities, but these adaptations don’t countermand the pain of that moment.

Despite the poignancy of such an experience, I would not describe my life as a constant refrain of sight envy. I have my routine frustrations—I can’t drive (yet), I can’t pluck my own eyebrows, I can’t readily identify colors—but I don’t focus on these things. Similarly, I don’t elevate my disabled experience as some delayed-release enlightenment. My disability doesn’t make me a saint or superstar. If I inspire others, let it be because I am myself, not because I am disabled.

My relationship to disability is symbiotic: disability is part of my word cloud, and I am part of its word cloud. It affects my perceptions, decisions, behaviors, and attitudes, and I contribute to its characterization.

People identify as “disabled” to emphasize a shared experience. This is not to say that every blind person lives the same life, with identical frustrations, joys, and fears. Some blind people program computers, climb mountains, enjoy talking watches, and refuse to use braille—all unappealing activities for me.

Ministries, education courses, and service organizations often insist that disabled people come together to bolster each other through the negative experience of disability, and the “support” groups that are fostered in these places respond to this negative bias.  I’ve been to support groups for blind people where, by way of introduction, people list their condition after their name: “Hi, I’m Joe, and I have RP” or “Hello, I’m Janet, and I have macular degeneration.” Groups that encourage this kind of introduction also encourage a “medicalized” focus: “We are who we are by virtue of our diagnoses. And we’re only here because our doctors thought it was a good idea.” This support emphasizes the “loss” in vision loss and encourages moments of sight envy.

Meaningful support encourages the sharing of all experiences, both positive and negative, significant and mundane. Effective “disability groups” offer a chance for their members to talk about all areas of their lives, because disability affects all areas of a person’s life.

By identifying as disabled, I can participate in the dialogue among disabled and nondisabled people. I can engage with the experiences of suffering, pain, and exclusion, but I can also enjoy the discussions of humor, surprise, and delight. Most disabled people can relate to the awkward approaches of curious strangers, but many can also relate to the new friendships born of a person’s curiosity—or the unexpected delight from an episode of graceful, unsolicited assistance. I will not go so far as to say that disability is a “blessing in disguise,” because many disabled people must still fight for their rights to education, accommodation, and—in some cases—life. However, to understand “disability” as a tag for explicit inferiority of mind, body, or experience is a serious and limiting decision.

For most of us, disability is not a choice, but the label is. We choose to identify, because we choose to share, to fight, to rejoice—to experience our humanity together.

 

* For a complex discussion of the vocabulary of disability, see “Reassigning Meaning” from Simi Linton’s Claiming Disability: Knowledge and Identity (1998).