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 For most nondisabled people (that’s “able-bodied” people in outdated lingo), the word “disability” summons a troupe of negative conditions.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).