Americans with disabilities are, in one sense, just like everybody else: They come from varied backgrounds and cope with the challenges life presents them in many different ways. But living a full, satisfying life with a physical or mental handicap is no ordinary struggle.
Jan Garrett
Jan Garrett, who now directs the Center for Independent Living, an advocacy group for people with disabilities in Berkeley, California, had an especially difficult childhood. It wasn't just the usual problems with schoolyard bullies and awkward social relationships. Garrett was born with no limbs.
"I couldn't play on the play equipment," Garrett recalled. "I couldn't really have the kind of social interaction with the other kids that the other kids did, and there were lots of kids who made fun of me… growing up in school."
Garrett said that when children with disabilities see other children with disabilities, it helps them to build self-esteem. But in Oklahoma City, Oklahoma, where she grew up, she rarely met other children with disabilities. That changed one summer, when her parents sent her to an Easter Seals summer camp especially for children with disabilities.
"Everything was made [to be accessible] for kids with disabilities, so we could go fishing. We could do archery. We could ride horses, and we could literally sit around the campfire. A new world opened up to me."
Esperanza Diaz Alvarez
People with disabilities can often attain essential coping skills much earlier in life than others. Esperanza Diaz Alvarez, for example, was born with spina bifada, a condition that renders her unable to walk on her own.
But Alvarez's immigrant parents spoke no English. So as a very young girl, she was also forced to become the family spokeswoman. She says interpreting for her parents in discussions about medical costs, insurance and her disability forced her to grow up fast.
"Imagine hearing, 'Oh, you're having surgery to repair this and repair that,'" she says.
Alvarez acknowledges that a lot of her childhood was "traumatic," but, "I think that's probably why I am at the maturity level that I am."
Gerald Baptiste
Unlike Alvarez and Garrett, who were born with their disabilities, some people are disabled by a sudden accident or illness. Gerald Baptiste, who also works at the Center for Independent Living, can see patches of dark and light and can even read letters about 15 centimeters high. But he is legally blind.
"It happened when I was 29. I had 20-20 vision. I never wore glasses. Went to bed one night, woke up the next day, and it [my vision] was gone," he says.
The cause was an undetected neurological disorder called optic nerve atropy. Baptiste didn't know much about the resources available to help him and other people with visual impairments. So he made do as well as he could on his own for almost 15 years.
But in 1979, he took a temporary job doing outreach with the center's blind services program. Thirty years later, he's still there and credits the center with helping him to become more independent and to assist others to do the same.
"I think it is a matter of… educating the community about what people with disabilities can do, [and that they can] lead the same normal life everyone else leads."
Melinda Hicks
That is a difficult challenge for Melinda Hicks, who was a successful freelance computer professional for much of her adult life. But in 2003, Hicks began to weaken and her balance became shaky. She was diagnosed with a degenerative nerve disease called multiple sclerosis, or M.S.
"I went from being a full-time working person with a career to now someone who now, for the most part, is bedridden," says Hicks, without a hint of self-pity.
An avid beach lover, the only time Hicks is able to get outside these days is when her aged mother or another family member or friend is on hand to help.
"It hurts me in my soul to have to use other people to fill in the gaps in my life. And so I don't, for the most part… I have become a recluse."
Hicks admits that her predicament is "scary," but is doing what she can to take control.
"There've been studies that's been done that when people have strokes, if they start crawling, the brain starts to rewire itself… like when you're a baby and you crawl before you can walk."
Hicks is attempting to rewire her own brain.
"I crawl on all fours, as opposed to walking on two legs. So far, it works, but it's slow."
There are many hopeful signs. Advances in assistive technology for people with disabilities continue at a rapid pace, and enhanced public awareness of disability issues is affecting the design of public space and consumer products in positive ways. These developments are hastening the day when every person with a disability will be able to realize their full human potential.
