Thirty-year-old Chris Rosa of Queens, N.Y., is a leading educator, advocate, scholar and policy-maker concerned with the welfare of people with disabilities. His dedicated efforts recently led to his being named to receive MDA's 1997 National Personal Achievement Award.

The award, announced on the national broadcast of the Jerry Lewis Labor Day Telethon, recognizes the accomplishments and community service of individuals like Rosa who are affected by any of the 40 neuromuscular diseases in MDA's program.

In 1976, when Rosa was a 9-year-old enthralled with his favorite baseball team, the New York Mets, he received a diagnosis of Becker muscular dystrophy, a muscle-wasting disease related to but not as severe as the more common Duchenne form. Rosa recalls that the following months were not happy ones for his family, not only because he had to rethink some of his own personal dreams (such as playing for the Mets) but also because he could tell how deeply saddened his parents, Marie and Tullio, were by the diagnosis.

In September of that year, for the first time in months, he heard unrestrained sounds of laughter from his parents as the family watched a man on TV wearing blacked-out teeth cavort about a Las Vegas stage.

Rosa's father pointed to the man and said: "That's your hero." The man was Jerry Lewis and the show was the 1976 MDA Telethon.

Rosa says he felt tremendous relief not only at hearing happiness in his parents' voices but also from the newly found conviction that through Lewis and MDA the family had a resource, an ally even, to help them face the challenging years ahead.

But that wasn't all they saw on the Telethon that year. "I saw Jerry Lewis introduce a man with muscular dystrophy named Bob Sampson," Rosa remembers. "He talked about his struggle against discrimination and exclusion, and how hard he had to fight to go to college and graduate from law school. This gave real meaning to my own struggle."

A SENSE OF COMMUNITY

Rosa's first inkling that there could be a sense of community among people with disabilities grew from his early exposure to other families with neuromuscular diseases at MDA clinic. Soon he became a volunteer on behalf of MDA, serving as a regional MDA youth spokesperson during his teen years and participating in MDA fund raising throughout college.

In high school, Rosa knew that he had the intellectual skills to learn alongside mainstream students, but he was sometimes relegated to a special education environment due to his physical disability. The experience of being segregated was extremely disheartening but had an unexpected effect on the young man's awareness.

"I got to talk to other kids in special education and I found out that the feeling of isolation and depression was not unique to me," he remembers. "It was the first time I realized that there is real institutional inequity out there."

Rosa undertook a double major in sociology and philosophy at Queens College of the City University of New York (CUNY), and graduated phi beta kappa with a 3.98 academic average.

These days, like Bob Sampson, Rosa is a role model in his own right in his work as director of the Office of Special Services for Students with Disabilities at Queens College. He counsels students who have disabilities and ensures that they're provided with reasonable accommodations and support services.

He has also written about finding accessible colleges and has been interviewed on the subject of disability by "The New York Times" and NBC's "Today Show." Now he's working on a doctorate in sociology, writing a dissertation titled "Disability Rites: The Construction of Disability Culture."

CLASHING VIEWS OF DISABILITY

Rosa perceives that there is a schism today among people with disabilities who model themselves, knowingly or not, on different defining ideas of what it means to have a disability. Many still hearken to the traditional "medical model" in which a person with a disability is defined by his physiology and in particular by his impairments, i.e., what is "wrong" with him.

Then there is the more recent "disability community model" which provides its members with a sense of political and cultural identity. Such a community isn't defined in terms of how it exists in relation to medical treatment, but in fact has intrinsic value and merit on its own terms.

"That concept is defined as almost the diametric opposite of the medical model," Rosa says. "And that tension has caused a kind of schizophrenic identity among people with disabilities. The only solution is when people with disabilities emerge with a new definition of disability culture, something that takes all the fragments and integrates them into a coherent whole."

Rosa also has national responsibilities through his service as vice chairperson of the Subcommittee on Employee Disability Concerns of the President's Committee on Employment of People with Disabilities. He helps advise the government on how to craft and maintain policies to protect the interests of people with disabilities.

If that weren't enough, Rosa is a spokesperson, policy-maker and volunteer leader of MDA. He has served on MDA's National Task Force on Public Awareness since its inception in 1992, and was later named to its steering committee. Rosa and his fellow Task Force members advise MDA and speak out in the Association's behalf on such complex issues as personal assistance services, Medicaid funding and the Americans with Disabilities Act.

Rosa was elected an MDA national vice president in 1994 and this year was elected to serve in an even more critical guiding role as a member of the Association's Board of Directors.

As grateful as he's been for the chance to serve MDA, Rosa was particularly humbled on learning he was to receive the National Personal Achievement Award. "I've had the pleasure of knowing some of the people who have received it in the past, people such as Steve Mikita and Bill Altaffer for whom I have enormous respect," he says. Rosa hasn't met Anthony Vitale, the computer engineer and linguist who has ALS and received the award last year, but he has followed his story and has great admiration for him.

LIVING IN AN AGE OF HOPE

On Labor Day weekend, Rosa appeared live on the 1997 Telethon broadcast to receive the award from Telethon Co-Host Jerry Springer. Rosa spoke to the millions of Telethon viewers with unabashed optimism, saying that, thanks to MDA-funded research advances, we're now living in "an exciting time, an age of opportunity, an age of hope."

"MDA is without a doubt the most significant institution in my life and the lives of thousands of people with disabilities," Rosa said. "It educates the American public about the talents and abilities of people with neuromuscular diseases; it encourages us to aspire to small things and great things; it helps us to live and thrive; and it allows us to hope, dream and look forward to the day when no one will have to endure the more harmful effects of neuromuscular disease ever again."

"Invest in us, in our potential," Rosa said as he urged Telethon viewers to support MDA's life-enhancing programs in research and services. Rosa himself has set a singular example by investing his whole life in a continuing effort to champion and uphold the rights and the dignity of people with disabilities.