Magazine article The Exceptional Parent

Advocating for the Advocates

Magazine article The Exceptional Parent

Advocating for the Advocates

Article excerpt

"To whom much has been given, much is expected."

Edward M. "Ted" Kennedy, Jr. has been given much in life yet, it could be said that much was also taken. His right leg was amputated at age 12 in 1973 and he underwent chemotherapy for a malignant cancer called chrondosarcoma. As a member of one of the world's most famous families, Ted also had to summon his courage and be ready deal with his very personal experience while under the media's scrutiny.

His father, Senator Edward M. Kennedy, recalls that his son declined to leave the hospital in a wheelchair and instead walked into the glare of the spotlight, using crutches and his new prosthetic leg. The young man was letting the world know that he accepted the challenge and would not look back.

Through the years, Ted has been photographed conquering the ski slopes wearing his prosthetic. Yet behind the scenes, particularly in the early days of his ordeal, Ted was not immune to the physical and emotional pain of his illness.

"At school, I remember feeling really embarrassed about my artificial leg," Ted recalls. "It made a lot of noise as I walked down the hall. I remember feeling ashamed of my personal appearance, my loss of hair. Changing in the boys' locker room after swimming, I felt embarrassed about taking off my artificial leg in front of the other children. To me, my stump looked deformed, scarred, purple, and disgusting. I was really feeling embarrassed about the way I looked."

ADVOCATING FOR CHANGE

Rather than pretend that emotions could be cancelled out of the "challenge equation", Ted used those strong memories later, to fuel his life's work. At numerous conferences and public appearances, he has candidly spoken about this side of disability. Today, he is an attorney in New Haven, Connecticut, practicing health and disability law. He has served as Executive Director of Facing the Challenge, a non-profit advocacy and public policy office on disability-related issues.

"I am inspired by a lot of people I meet when I travel across the country," he says. "I have seen that the struggles people with disabilities face are things like trying to get a job, or trying to get in to their favorite restaurant; into a bus with everyone else; or go to school and downtown. These are the real struggles those people face."

Recently, Ted has been instrumental in helping to expand job opportunities for people with disabilities by working for the Massachusetts Rehabilitation Commission as Marketing Director of the Massachusetts Corporate Partnership Program. He is also on the Research Faculty of the Yale University School of Medicine, and is the Director of the New Haven Lead-Safe Home and Community Project, a community-based project addressing pediatric lead poisoning, one of the leading known causes of mental retardation.

As the keynote speaker at the California State University conference on "Technology and Persons with Disabilities," Ted recalled how, during his illness, he was told by a teacher that there was no reason to feel ashamed of how he looked, when at the time what he needed was "a validation" of how he felt.

"If there is one thing I will never tell my children, it's that they shouldn't feel that way," he told the audience. "I think that now we know that frequently, with disability, come anger and pain. Imagine how difficult that is for someone with a communication disability. Technology can help and will help people with disabilities be able to express their emotions and not be afraid and demand more control in their lives. None of them talk about the emotional isolation that many people with disabilities face. It's not just a physical challenge, it's an emotional one as well."

WEALTH OF PERSPECTIVE

Fortunately, Ted received support from his family. He benefitted from the perspective provided by his father, whose older sister, Rosemary has mental retardation. …

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