Author's note: In this and all future posts my daughters' names have been changed to Sam and Kelly in order to protect their privacy. A few years ago my daughter Sam, who is autistic and has known as much since she was eight, came home from middle school wondering, "Mom, an I disabled?" Nobody had "said something," and nothing in particular had happened at school. But she knew she had an aide, an IEP, and a scheduled time in the resource room. She knew she saw a social worker and a speech therapist in school and another one of each outside of school. She worked with an occupational therapist once a week and met with an English tutor. She knew that autism was the reason for all of these extra people in her life, and she loved all of them. So when she asked if she was disabled, the question didn't arise from a feeling of frustration or self-pity; she was just curious.
"No. You are NOT disabled. You have autism and that means some things are harder for you than for other people, like figuring out what to play on the playground, but some things are easier for you, like math and memorizing the Bill of Rights."
The intensity of my own conviction about her being non-disabled surprised me. Sam received her diagnosis before she turned three. By the time she posed this question, she had been seeing multiple therapists for nine years. I knew full well that autism was a disability, that my daughter fell far enough along the spectrum that no one would ever question her diagnosis, and that she might never life independently.
And yet, I do not believe she is disabled. To me "disabled" connotes an inability to do anything. An elevator is disabled when the cable breaks. A bomb is disabled with a bomb squad defuses it. A pianist whose hand is crushed in an automobile accident becomes disabled if his or her sense of identity comes only from playing piano.
My daughter, however, has many talents and life skills. She cooks, she sews, she travels the city alone on public transportation (though not when she posed the question!). She cleans the cats' litter boxes, unloads the dishwasher and helps with the laundry. She laughs easily and explores her passions with a creativity that still surprises me sometimes. I could (and certainly will in later posts) chronicle the many ways autism impairs Sam's functioning and weighs heavily on our family, but that means she has a disability, not that she is disabled.
Perhaps I'm drawing a distinction that is semantically meaningless, but to me a disability is a component of one's personality; it is one of many traits we have, as in She has a disability. In contrast, "disabled" is something we are: She is disabled." Maybe I'm being ridiculous, but I think not, because I need to make the distinction to be a good mother. For me, thinking of her as disabled would mean locking her into a world of very limited expectations. Thinking of her autism as a disability, on the other hand, requires me only to acknowledge that she will never be a successful used car salesman. Or a professional basketball player. Sam is only 5'3" though, so she was never destined for basketball stardom even with better hand-eye coordination. The point is, her height can be viewed as a disability too. None of our children can truly grow up to be anything they want to be; we all have limits. With an autistic child those limits certainly seem more, well, limiting, but my job as a mother is to focus on building her perception of her own agency, not to focus on her limits.