I lived in Berkeley for fifteen years, and if I could, I'd be living there still. There were so many things I loved about living in there - the blue sky and golden hills, the Asia/Pacific rim culture, the bookstores. But one of the things I liked the best about it, was that everywhere you went, there were people of all abilities and disabilities mixing together with ease and naturalness. There were quadriplegics in the cafes, paraplegics zipping down the sidewalks in their electric wheelchairs, deaf people and their sign interpreters in class with me. There was a Center for Independent Living in Berkely, that allowed every make and model of the human form to make lives for themselves there.
So now I live in a different city and I'm the mother of a special needs child. When i pick her up from her wonderful school each day, I get a bit of that Berkeley feeling. I see kids with flippers instead of arms, kids using walkers or wheelchairs, or kids like mine, who have all their body parts in functioning order, but whose neural pathways are mysteriously tangled. And in this zone of the school, it's a tiny Berkeley-like rainbow republic, where these kids are seen for the lovely, brave little beings that they are. My daughter's autistic hand flaps are just one aspect of her, and don't make the rest of her - her high-spirited giggles, her pretty brown eyes - disappear.
But once we drive out of the parking lot, it's a whole different world. All those other kids disappear, and it's just us - our weird rainbow-coalition family with kids that are differently colored as well as differently abled - out there. And people do stare or ask stupid questions. And there are days I get worn out being the shield and sword for my darling girl, and decide I just can't cope, so we stay home. But mostly we're out and about, getting in the world's face, saying 'We're here, and it's our world too." And I can tell that sometimes, People look on us with pity, and sometimes they hold their own typically developing kid a little closer in sudden gratitude that they're not like my sweetie. Which is fine, even great. Anything that makes people appreciate the gifts they have in their own lives, even if it's me and my special girl, is a good thing.
But here's what I'm wondering (and if any of you have first-hand knowledge, please share); are other families with special-needs kids, perhaps kids with more obvious physical disabilities than my kid has, choosing to stay home, or stay in safe zones? Is it just too tiring to go out and be constantly fending off rude stares? And if so, what would it take to get more of these kids out and about? Special hours at museums, pools, etc. for only special kids and their families? Because I do think that if we go out more, the world will get used to us more. How wonderful it would be if we could all make our own little corners of the world places, like my beloved Berkeley, where all forms and expressions of the human body, of human abilities, could live out in the open, under the sun, which shines on us all, and judges no one.