My featured person this week agreed to be interviewed only under condition of anonymity.
“Janet” was born with spina bifida, a neural tube defect the National Institutes of Health defines as “involving (the) incomplete development of the brain, spinal cord, and/or their protective coverings.” Spina bifida originates in the womb, has widely ranging severity, and nearly all forms include some mobility or physical disability.
“I was ambulatory (in some way) until about eight years ago,” said 53-year-old Janet. “But for years until then I was experiencing increasing mobility difficulties. I went from walking using ankle-foot orthoses to using a cane, and then to a walker before going to a wheelchair.”
Her high school years were toughest. She said, “Those years are challenging for anyone, but for people with disabilities they are more so. Kids teased me. They wouldn’t include me in social activities. I was the social outcast of my high school. Because of my distinctive walk, I looked like I waddled like a duck. I would hear “waddle, waddle” or “quack quack” when I walked by other students. I had a thick skin, though. I’d ignore them and go on, or stare at them like they were crazy.”
In part what made her into the person she is today was her parents, who had the same expectations for her as for her siblings. Her parents expected her to be independent, go to college, live on her own, and become employed. Janet ended up earning a master’s degree and becoming a rehabilitation counselor to help other people with disabilities find work.
However, her life changed radically eight years ago after fighting bacterial meningitis, after which she became unable to work and started using a wheelchair. Today, she’s the youngest person in a retirement community. She often feels “landlocked” because of a lack of interaction with people her age and the high cost of transportation, which makes accessing community opportunities problematic. She spends much of her time reading books and interacting with others on the Internet.
In part, her experiences with spina bifida have made her into a better person. She said, “Because of having it, I think I can tolerate differences in people, perhaps more so than others. I am certainly more patient with people. I also tend to have more of an optimistic outlook on life than many people I know.”
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