In Search of the 'Real Me'

by Christopher Rosa

"Don’t worry, Chris. Someday you’ll meet someone who’ll look past the wheelchair and see the real you."

These words of consolation were uttered by one of my best friends, in the middle of a sleepless night during my sophomore year in college, in the wake of my being turned down for a date by the current "girl of my dreams." These words were ones of kindness, of compassion, of encouragement, spoken with the most supportive of intentions.

And they burned like salt in an open wound.

These words stung — not because I was still smarting from rejection. After all, in college dream girls shot down amorous sophomores at least once a week.

Chris Rosa, his brother Gian Rosa and niece Isabella Ragona

Rather, these words hurt because they were spoken by one of my closest friends -— someone I thought knew me as well as anyone in the world. If she expected these words to bring me comfort, how could she, or anyone else for that matter, begin to understand me?

College represented a coming of age, an awakening for me, as it does for thousands of American students with disabilities each year. In college, for the first time I truly appreciated that I was part of a larger community of people with disabilities. This community held an empowered understanding of what it meant to be a person with a disability, as opposed to the more pitiable, stigmatizing concept of disability typically held by contemporary American culture.

Although I couldn’t yet fully and clearly articulate this new understanding, I knew intuitively that it didn’t involve surrounding myself with people who were "willing to look past the wheelchair" to find "the real me." In fact, I understood that anyone who looked past my wheelchair missed "the essential Chris."

I had spent half my life struggling to integrate my status as a wheelchair user with a neuromuscular disease into my sense of self. Anyone who looked past this dimension of my persona missed core parts of my identity.

Culture Clash

I now realize that the angst I felt over my dear friend’s words largely resulted from a subtle yet significant clash of cultures. In her effort to offer comfort, my friend habitually drew upon the mainstream cultural attitude about the relationship between disability and identity.

The mainstream regards disability as a source of stigma; as something to be masked and avoided at all costs. This attitude tries to sanitize disability phenomena through “politically correct” phrases like “physically challenged” or “differently abled” that rob the experience of its meaning; it encourages a “don’t ask, don’t tell” approach to disability issues.

I, in turn, interpreted her well-meaning words within my new understanding, which regarded disability identity as a source of pride and the disability experience itself as having intrinsic value. In short, I interpreted her remarks as a member of a burgeoning disability culture.

Scholars have described disability culture as a means through which many Americans come to understand and describe their experiences with disability. It’s also been defined as a construct through which people with disabilities challenge the status quo; and in the extreme, as an emerging, defiant, even countercultural attitude among people with disabilities.

In simpler terms, disability culture is a set of cultural lenses, the use of which results in a unique way of seeing the world. These “disability-colored glasses” are used by those of us with disabilities, and those without disabilities who intimately know and understand our lives and experiences. These individuals are the culture’s “true believers.”

How do we true believers recognize disability culture? We know it when we see it, hear it, feel it, experience it.

We experience it in the form of a knowing nod by one wheelchair user to another passing on the street … in a hearty laugh at an inside joke that only people with disabilities, their families and close friends truly understand … in a shared roll-of-the-eyes at the overtures of a well-intentioned, yet overly solicitous helper … in a sense of satisfaction over small accomplishments, the magnitude of which only a true believer could fully appreciate … and in the instant solidarity and collective action of strangers with disabilities who find themselves confronted by the same barriers in a theater, restaurant, or other public place and together fight for their rights.

Disability culture is also knowable by its artifacts -— its unique objects and tools — such as the wheelchair.

For some, wheelchairs are seen as shackles that confine people with disabilities, inspiring dread, fear and shame. For others (thanks to the influence of organizations like MDA), wheelchairs represent progress, offering improved quality of life through technology. For most of us, wheelchairs are international symbols of access — symbols of the inclusion of people with disabilities into the mainstream of life.

Liberation from Limbo

For the true believers in disability culture, wheelchairs are, above all, liberating, providing mobility, independence and autonomy. They also liberate those caught in “disability limbo” from the ambiguous social expectations of mainstream culture.

Many people — especially those with neuromuscular diseases — are caught somewhere between “normal” walking and full-time reliance on a wheelchair for mobility. Mainstream American culture isn’t sure what to make of us.

There are highly defined expectations for “good walkers,” that is, they have a consistent gait, good balance and are presumed to be physically able, independent people.

There also are well-defined norms for people who use wheelchairs. Indeed, the presence of a wheelchair in a social encounter serves as “cultural shorthand” for a whole range of expectations: that is, the wheelchair user probably can’t climb steps, is entitled to use handicapped parking spots, can legitimately be offered help, etc.

In contrast, there are few clear expectations for those caught in between, who (as once described by a teenager at an MDA clinic) “basically look all right but walk kind of funny.” As a result, “funny walkers” often encounter stares or raised eyebrows when using facilities designated for people with disabilities, and suspicious looks when asking for help with tasks it appears they should be able to perform alone.

I vividly remember as one of the most liberating days of my life the day I stopped walking and committed to full-time use of a wheelchair. Of course, in some respects, the end of the ambulatory phase of my life was a profoundly sad and scary experience. Yet the thing I remember most was the overwhelming sense of relief I felt.

From my wheelchair, I felt liberated — freed from the fear of falling down, from the anxiety of struggling to stand from a seated position, from the gawking and whispers of onlookers, and most of all, from all the ambiguity and uncertainty. While in my wheelchair, no explanation was necessary; it did a lot of the talking for me. As a cultural symbol, it had extraordinarily liberating, explanatory power.

Looking Right at It

I was lying in my bed early one Saturday morning recently, awaiting the arrival of my personal assistant to help me get up and dressed, and thinking about the dimensions of disability culture for the purposes of writing this article. While lost in thought, I glanced into my living room and smiled as I saw my 4-year-old niece Isabella Ragona sitting with her legs folded in my power wheelchair, hand on her chin, watching cartoons, and patiently waiting for her Uncle Chris to get up so we could play.

Isabella is a beautiful, bright, funny, loving kid. She has never known her Uncles Chris and Gian in any way other than as wheelchair users. She understands and freely accepts that we work, play, dance, date, drive — all while using our wheelchairs.

As far as I know, she’s never had to “look past” my wheelchair to see the “real me.” In fact, she seems confused, even troubled, by photos taken of me during my younger walking and standing days. She scours these photos, as though searching for something important that seems to be missing.

Of all the esteemed scholars and profound thinkers who have shaped my thinking and understanding of disability culture, Isabella has been the most influential. She reminds me of the most important aspect of disability culture: Like any other living culture, it is actively created, learned and transmitted from one generation to the next. Disability culture is an important part of the tools Isabella is acquiring for understanding the world around her.

Isabella brings me hope by reminding me that, increasingly, people aren’t “looking past” our wheelchairs, aren’t looking past our disabilities. Rather, they’re increasingly seeing “the real us” — people for whom disability is an integral, usual, indeed even essential part of who we are.

Christopher Rosa, Ph.D., lives in Flushing, N.Y., and is the University Director for Student Affairs for the City University of New York (CUNY). He and his brother, Gian, have Becker muscular dystrophy. Rosa serves on MDA’s Board of Directors and National Task Force on Public Awareness. Rosa, 38, received MDA’s National Personal Achievement Award in 1997.