What Really Matters

Margaret L. is like any other teenage girl today: she talks on the phone, deals with the stress of schoolwork, and has a boyfriend. Unlike many of her peers, however, Margaret takes medication as part of her morning routine; and the time she spends in the school bathroom is not devoted to fixing her hair.

Margaret has spina bifida, a condition in which one or more of her vertebrae did not form properly, leaving her spinal cord—the most vital component of the central nervous system—unprotected. She has had eight operations and wears braces on her legs to keep them in the proper positions. Throughout all of these ordeals, she has retained her outgoing personality and positive view of life.

The 14-year-old attends high school and is not in any special classes. She is allowed extra time to get to class when she needs it. She says, “I get it [teased] a lot, but I do have a small group of friends who are great about everything.”

Margaret has had the support of her parents as well: “I think that, growing up with a disability, the best thing that I have had is supportive parents; without them I don’t know where I would be. They both have always said that I could do something if I really wanted to.”

After school on most days, Margaret works at Able-Disabled Advocacy (A-DA), an organization that helps the disabled, alongside her mother, Cindy. On other days she plays wheelchair basketball and tennis, even though she is not wheelchair-bound herself. Her evenings are spent at A-DA and doing schoolwork, such as the recent project on a genetic medical condition for which she selected spina bifida as her topic.

Margaret met her first serious boyfriend, Juan, when they played against each other during a wheelchair basketball tournament. “We were complete enemies on the court,” she says. They met again at a Spina Bifida Association conference. They danced together twice. Later she realized the special connection they shared, both having a disability.

Margaret feels that, far from having limited her, her disability has allowed her to do things she might not have been able to do otherwise. She says that she would not have been involved in sports at all if it was not for wheelchair sports, and she would not have some of her current friendships or her boyfriend. Rock climbing, cycling, and downhill racing (a kind of cycling) are some of the other activities she is able to participate in. Margaret also volunteers in an inclusion program at a Jewish community center, helping other kids with disabilities.

The prognosis, or outlook, for most people with spina bifida is excellent, and Margaret is thinking about the future. “I want to be a doctor of some kind,” she says, “though I’m not sure what kind yet.”