SENATE SUBCOMMITTEE HEARING Feb. 27th
CHRISTOPHER J. ROSA, Ph.D. - BIOGRAPHY
Christopher J. Rosa, Ph.D. |
02/23/01
Chris Rosa, 33, is a leading educator, advocate, scholar and policy-maker concerned with the welfare of people with disabilities.
As a man personally affected by the Becker form of muscular dystrophy, and as an articulate spokesperson who advocates daily to uphold the dignity and well-being of others affected by neuromuscular diseases, Rosa is passionately committed to seeing an increase in research investment by the National Institutes of Health to find treatments and cures for the various forms of muscular dystrophy.
Rosa is director of the Office of Special Services for Students with Disabilities at Queens College of the City University of New York. In his work, he counsels students who have disabilities and ensures that they're provided with reasonable accommodations and support services.
He is also a voluntary adviser to the Muscular Dystrophy Association. Rosa serves on the MDA Board of Directors and on the steering committee of the MDA National Task Force on Public Awareness, a body comprising noted individuals who are affected by neuromuscular disorders.
At age 9, Rosa learned he wouldn't be able to live out his dream of playing for the New York Mets when he received his diagnosis of Becker muscular dystrophy, a slowly progressing muscle-wasting disease. Later that year, he and his family received some encouragement and inspiration watching an airline executive named Bob Sampson speak on the Jerry Lewis MDA Labor Day Telethon. Sampson, like Rosa, had muscular dystrophy.
"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," says Rosa. "That gave real meaning to my own struggle."
In high school, despite his high intelligence, Rosa was sometimes relegated to a special education environment because of his disability. The feeling of injustice at being segregated was something he would never forget.
Rosa undertook a double major in sociology and philosophy at Queens College. He graduated Phi Beta Kappa with a 3.98 academic average. He went on to earn a doctorate degree in sociology at Queens College, writing a thesis titled: "Disability Rites: The Construction of Disability Culture."
Rosa also served for several years as chairperson of the Subcommittee on Employee Disability Concerns of the President's Committee on Employment of People with Disabilities, helping advise the government on how to craft and maintain policies to protect the interests of people with disabilities.
In 1997, Rosa received the MDA National Personal Achievement Award, which recognizes outstanding accomplishments of those affected by neuromuscular diseases. He was named an MDA national vice president in 1994 and elected to the Association's Board of Directors in 1997.
With the other members of MDA's National Task Force on Public Awareness, he has spoken out in MDA's behalf on such complex issues as personal assistance services, Medicaid funding and the Americans with Disabilities Act. Rosa himself has been interviewed on the subject of disability by such media entities as "The New York Times" and NBC's "Today Show."
"Invest in us, in our potential," he said during an appearance several years ago on the MDA Labor Day Telethon as he urged viewers to support neuromuscular disease research and services.
Rosa lives in Flushing, N.Y. His brother, Gian, also has Becker muscular dystrophy.
Read Christopher Rosa's testimony. |
