Although I’ve had a disability since I was four years old (that we know of anyway), I was mainstreamed at all times. In my family, “disability” was something reserved for people who used wheelchairs. The answer to any disability-related issue I may have had growing up was invariably:
- Try a little harder
- God only gives you what you can handle
- Suffering is good!
Saying I tried to “pass” and fit in among the non-Deaf, non-disabled is like saying the Pope is Catholic. Yeah, well, duh. I bent over backwards and twisted myself into loops to try and pass! I happily applied hairspray into a firm helmet of lacquer to keep my hair from flying back and revealing my dastardly, huge medically-unsexy-looking hearing aids. HEARING AIDS! Who wears the suckers when they are FIFTEEN YEARS OLD?! Who has their perfectly-hearing grandparents cutting out coupons for hearing-ware for them?!
The only people who were lower than me on the totem of uncool were people with developmental disabilities. I wouldn’t come within 10 feet of someone with a developmental disability. It’s the curse of those of us that desperately want to be “normal” in that sometimes we can be the most cruel. Or sometimes we want so badly to fit in that we shun anyone who might might expose us to be who we actually are: different.
After I started working at UC Berkeley and met fierce people within the community who had a disability, I started to realize that my fear of being labeled “deaf” or “disabled” had a lot to do with this perception that I had of “disability” and “deaf” equating helplessness, incapability — and perhaps even stupidity. Uncool, for sure, uncool.
Meeting people that I found inexpressibly hip, savvy, and adept who had a disability was huge for me. I met tens, hundreds of people at UC Berkeley and in the San Francisco Bay Area that I oozed respect for. Capable, smart, funny people. People who did something with their lives, people who were often good looking, well dressed, and disabled.
Liane Yasumoto’s Superfest pushed me further by exposing me to people with disabilities high on the artistry level. Sue Schweik’s Disability Studies course, my mentor Sarah Dunham and her book recommendations, and theOral History Project all swirled in front of me before settling into a new and complete picture of disability that looked nothing like what I once thought it to be. This new look — the new picture — was full of opportunity. It had pride. Beauty. Humour and grace.
It was not — is not — about sorry, sad and tired cliches.
But then I was told my daughter would be coming with Down syndrome — a developmental disability.
My world crumbled and all the self-acceptance, pride, and love for disability was stripped clean off me, reverting me to my terribly insecure 15-year-old self. Every injustice, every hurt, every wrong I’d ever suffered in my life came back and reverberated in my soul, in my marrow, for the remaining six months of my pregnancy.
I was that kid they hit because she was scar-faced and Deaf; my daughter would know that pain. I was that girl scorned because she was different; my daughter would know that feeling. I was the girl who hurt so bad she’d get nosebleeds from crying because she didn’t, couldn’t fit in; my daughter would know that feeling.
People talk a lot about “right to life” in the Down syndrome community. It’s not that I don’t believe in a right to life; it’s that I have walked the walk of disability. I know first hand how hard it can be. To choose to keep my daughter, while knowing full well how difficult her life might be was without question the most agonizing decision of my life. Like all parents, I wanted to know that I was doing everything that I could to give my child a life better than what I had, and I wasn’t sure I was doing that by letting her live.
Ultimately, what saved us all was coming to an understanding that her life is hers. It is not mine. As Gibran says:
Your children are not your children.
They are the sons and daughters of Life’s longing for itself.
They come through you but not from you,
And though they are with you yet they belong not to you.
You may give them your love but not your thoughts,
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow…
Moxie has a disability, but how her life unfolds will be different from mine. Different by virtue of the fact that we are different people, different because I have walked this path and am more aware than my mother could ever have been with me. Different because she’s Moxie — and she has it, too.