Rosa Helps Build ‘Shared Meaning’ Between Two Worlds

by Christina Medvescek

There are two ways you can marginalize people with disabilities,” says Christopher Rosa, a member of MDA’s Board of Directors.

“One way is to exclude and stigmatize them. The other is to set them apart by putting them on a pedestal and establishing them as paragons of virtue, tenacity and courage. Both of these approaches end up distancing people with disabilities from others.”

It’s Chris Rosa’s mission to be a bridge between those groups.

As a 37-year-old man with Becker muscular dystrophy (BMD), a full-time wheelchair user and a director for student affairs for the City University of New York’s 9,000 students with disabilities, Rosa, of Flushing, N.Y., strives every day to show that people with disabilities are just people.

He accomplishes this through a variety of means, both professional and personal. He works with kids, sometimes coaching, sometimes mentoring. He facilitates accessible education for students with disabilities.

He goes crazy for the Mets and rocker Bruce Springsteen. He serves on high-level governmental committees regarding disability issues. He goes to Jersey Shore rock ‘n’ roll clubs.

He is himself.

Shared Meaning

Rosa and his younger brother, Gian, learned in 1976 that they had BMD, when Rosa was a 9-year-old aspiring baseball player. Reluctantly giving up his dream to play for the Mets, Rosa determinedly took on new dreams over the years: to excel academically, to advocate and raise funds for MDA, and to support and encourage others with disabilities to follow their own dreams.

Rosa entered CUNY’s Queens College planning to major in either media studies or law, but a sociology course left him “enthralled.” He realized that his identity as a person with a disability had little to do with his muscle weakness and much to do with society’s reaction to him.

This ultimately led him to write his doctoral dissertation in sociology on “Disability Rites: The Construction of Disability Culture.” By looking at the artifacts of American disability culture — jokes, language, social interactions — Rosa identified values, assumptions and areas of conflict.

For example, a common “joking” experience is for a nondisabled person to ask, “Got a license for that thing?” as a wheelchair user whizzes past.

“Generally, people with disabilities experience that kind of thing as patronizing,” Rosa says. “But in fact, people without disabilities are using this as a way to have ‘shared meaning.’ They don’t know a lot about wheelchairs but they do know cars, so they make jokes to place the experience in a shared context.

“But in order to have a meaningful interaction and not just dismiss the person as an insensitive jerk, the person with a disability has to catch on at some level,” Rosa notes.

Although much remains to be done, such “intercultural” interactions are becoming easier, Rosa believes, in part because the general public is more disability-savvy and federal laws somewhat level the playing field. In addition, people with disabilities have learned how to “manage” these encounters.

“When people used to stare at me as a kid who walked differently or someone in a wheelchair, I would be put off, angered or disconcerted by that,” he recalls.

“Now, almost without thinking, I do more to put those folks at ease, to get the disruptive aspect out of the way so we can get on with the interaction. People with disabilities are very skilled at that.”

Sacred Responsibility

Rosa brings his understanding of disability culture to his work for MDA. In addition to serving on the Board since 1997 and chairing its Public Affairs Committee, he’s served on the MDA National Task Force on Public Awareness since 1992, and received MDA’s National Personal Achievement Award in 1997.

Rosa is warm in his praise of the “visionary leadership” of the MDA Board. His place in that constellation is to highlight “the first-person experience of families and how they’re affected by neuromuscular disease.”

As a child, Rosa was deeply moved when watching the Jerry Lewis MDA Telethon. Not only did it help him feel that he and his family weren’t alone in their fight, but inspirational speeches by adults with muscular dystrophy filled him with hope for his own future.

“MDA is charged with an awesome responsibility, which is accurately representing the experiences of people with neuromuscular diseases to the world through the Telethon,” he says. “It’s to the Association’s credit that it is helping the American public see that people with neuromuscular diseases have the same values as other Americans.”

Rosa has dreams yet to fulfill. Becoming a dean of students at CUNY. Teaching a “Sociology of Springsteen” course. Promoting MDA’s translational research effort (which seeks to move promising research into practical therapies). Finding a reliable, affordable wheelchair-accessible van.

And, most especially, extending a hand back to kids with disabilities who are trying to build an independent life. Of this task, he says simply, “It’s a sacred responsibility.”