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.

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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.

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4 Comments

  1. Excellent essay.

    Reply
  2. LOVE THIS ESSAY. Thanks for posting it!

    Reply
  3. Reblogged this on The Way Eye See The World and commented:
    This is a long post.. however it touches on many things that a person with blindness worries about, especially adjustment to disability. I encourage you to read it when you have about 15 minutes. I’ll share more about my current adjustment to my disability later.

    Reply
  4. Thank you both!

    Reply

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