Narrative Inquiry in Bioethics

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 13–year–old, and she will notice if I start to sound preachy. [End Page 207]

“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 sign-posts, 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...