The Influence of Disability Within My World

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Although I’ve had a disability since I was 4 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! “with fire we test the gold!”

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 that might might expose us to be who we actually are: different.

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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, 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. Disabled.

Liane Yasumoto’s Superfest pushed me farther by exposing me to people with disabilities high on the artistry level. Producing movies and art that I deeply appreciated.

Sue Schweik’s Disability Studies course, my mentor Sarah Dunham and her book recommendations – the reading that I did – the Oral History Project – all of these pieces swirled for me before laying 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.

Was not, is not about sorry, sad and tired cliches.

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But then. I was told my daughter would be coming with Down syndrome – a developmental disability!

My world crumbled, yes, 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 6 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, you see. 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; 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.

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For the post on my experience with Down syndrome before Moxie came: Down syndrome Angels?! HELL’S Angels!

 

Full text from Kahlil Gibran’s ‘On Children’

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,
which you cannot visit, not even in your dreams.
You may strive to be like them,
but seek not to make them like you.
For life goes not backward nor tarries with yesterday.

You are the bows from which your children
as living arrows are sent forth.
The archer sees the mark upon the path of the infinite,
and He bends you with His might
that His arrows may go swift and far.
Let your bending in the archer’s hand be for gladness;
For even as He loves the arrow that flies,
so He loves also the bow that is stable.

 

 

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