The right to belong: Concerns of the disabled
By Jonathan Burke
Published: November 6, 2008
The stigma attached to disabilities and the exclusion of people with disabilities were the themes of the third annual Martha's Vineyard Community Services Fall Training Conference, "Different Like Me: Learning from the Experts," held Friday, Oct. 24.
At the pre-conference event, open to the public, held at the Martha's Vineyard Hebrew Center, the program began with a presentation of the documentary, "Including Samuel," which, along with other examples, tells the story of a young boy afflicted with cerebral palsy, an illness which prevents the brain from being able to coordinate the movement of muscles.
In the film, Samuel's father, Dan Habib, the photojournalist who produced the documentary, describes the common prejudice that people with serious mental or physical disabilities experience. "Less smart, less capable, and not worth getting to know," Mr. Habib says. "I think about inclusion every day."
Photo by Isaiah Habib
Mr. Habib and his wife struggle with the emotions of parenting a severely disabled child. Samuel is fed through the stomach, is unable to walk, and needs help going to the bathroom. Even so, he plays tee-ball in his wheelchair, and goes to a regular public school. His teacher is filmed saying, "Not having inclusion takes away from community."
Samuel's mother says, "I remember being really afraid; how could he run around on a football field; how could he go to college when he couldn't hold a pencil; I was very afraid for him." And Mr. Habib adds, "I couldn't bear to see him left out because he so desperately wants to be involved with everything."
But Samuel's experience - the supportive, loving family, the many teachers meeting weekly to discuss his lessons - is not everyone's.
The story of Keith Jones, a Boston area resident, who also has cerebral palsy, is also documented in the film. He remembers a special school in his early years where the curriculum consisted of crayons and paper, even though he asked to study math. Not for you, was the response.
"How do I develop a positive self image, if secluded, stashed away in a demeaning way," asks Mr. Jones. Many of his peers, he remembers, were medicated to the point of being comatose.
Photos courtesy of Dan Habib
In the sixth grade, Mr. Jones moved to Boston and entered a public school. But he is another exceptional example. His family, according to the documentary, taught him to never let another person define or restrict him. Now married with children, he is the chief executive officer of his own company.
After the film was shown, its message was reinforced to the close to 100 Island professionals, family members in attendance by featured speakers, Dr. Barry Fogel, a neuro-psychiatrist and a behavioral neurologist at the Brigham Group in Boston and Mr. Jones.
Dr. Fogel admitted that sometimes inclusion could backfire, and prove harmful. "Astonishing cruelty," and "endless negative feedback," were phrases he used to describe some children's integrated classroom experiences.
Mr. Jones noted that rights for the disabled is the current era's civil rights movement and inclusion is the way to break down the barriers of segregation.
Jonathan Burke is the outreach coordinator for Daybreak Clubhouse, a division of Community Services.
