What It's Like Living 'in Between' With Disability
“Special” on Netflix is a show that illustrates the tension I feel in having a mild physical disability. Ryan, who has hemiparesis cerebral palsy, expresses envy of a friend who is a wheelchair user named Bob.
“I’m not able-bodied enough to be hanging in the mainstream world,” Ryan says, “but I’m not disabled enough to be hanging with the cool PT [physical therapy] crowd.”
Hemiparesis is a mild form of cerebral palsy that affects one side of the body. Having hemiparesis means living between two worlds: I am not a native speaker in the language of able-bodied people or the language of disability. When my able-bodied friends talk about driving and gas prices and oil changes on their cars and any physical labor they do, I cannot relate. When my disabled friends talk about their support administrators and caregivers, I also cannot relate.
I know I don’t have the worst life and am able to enjoy much independence that other friends with disabilities are unable to enjoy. Still, sometimes I wonder if I’d have a greater sense of belonging in the world if I were able-bodied or even more severely disabled.
Years ago, I went on a trip with my church and slept downstairs while the rest of the group slept upstairs, because stairs were too difficult for me. A few years later, I went on a trip with a disability group and experienced just the opposite: I slept upstairs while most of the group slept downstairs. I am grateful for the opportunity to be with different groups and be friends with people with and without disabilities. Still, no matter who I’m with, I am always the “different” one.
There are times when people underestimate me —they treat me as a child or over-help me. There are other times when people overestimate me, and everything feels like my responsibility within disability circles as the “high-functioning” one.
When someone thinks about disabled people, they tend to think of wheelchair users or those who use other assistive devices. When people think of able-bodied people, they think of people whose bodies are able to walk perfectly straight. Do people even know where to begin or how to categorize me, a young woman who uses no assistive devices, walks with a limp, and has a bent right hand? Who looks able-bodied sitting down, but clearly has a disability when she stands up?
In some ways, I can belong everywhere. In other ways, I belong nowhere.
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