There is a rather sweet, yet saintly twisted like belief that children with disabilities, especially neurological or mental are the embodiment of everything we have deemed to be pure, holy, untarnished and I suppose perhaps even Godlike, (would probably help here if I actually believed in one, oops.) We have all dealt at some point with the notion that children with Down's Syndrome are the epitome of light, laughter, ethereal light and unbridled affection and love; whether that be a personal connection, a bad Hallmark movie or a sweet article in People, as there was this week about Jaimie Foxx's little sister with Down's.
There I was hanging in my Gyno's waiting room, with instinctive legs crossed tight, coffee stapled to my lips I casually picked up People, (hey I was desperate for mental bubble gum). There it was, Kim Kardashian and her'marriage/divorce', something about some nobody not knowing she was living with a serial killer for a decade, and buried in the middle Jamie Foxx and his sister. Instinctively and almost feral like, I ripped to the center of the rag so desperately to believe it was attempting to raise Down's awareness, about how much jamie Foxx adored and aided his sister (which I do not doubt). I clawed at the belief that here was someone with celebrity status that could finally enter the disabled world and invite us in with him. I suspect he might have thought that initially, but add in four assistant editors and a deadline, what was left was kitsch, glitter and for me, a burning blush of embarrassment. A feeling of, how does this really ....help?
A quick gathering of my emotional wits and an equally stealthy realization, of course it doesn't. The article did exactly as it's editorial slant demanded; mental disability is cute, cuddly, huggable and easy to dress up and douse in proverbial glitter, tree sap and sugar free syrup, especially when it lives in big brother's mansion with "other family members." Can't speak for anyone else's interpretation of that but I distinctly heard the echos of "caregivers" there.
"What you got against Down's Syndrome eh?" I hear you cry, or at least mutter beneath the canopy of your brain matter. Fuck all of course! What I do take rather massive issue with is how we in society allow the media tell us how to feel and express our relationship with disability. We want the Children's Miracle Network story, the tears to the eyes Special Olympics commercial, we crave the St.Jude's Hospital telethon; we want to be told how to perceive and how to feel about disability. Hell, of course we do, it's foreign, different, in our peripheral vision, even when it stares us in the iris.
My first job (post paper route years) was to care for a wee girl and her two brothers. When I first met Chloe she was 4, her brother's 8 and 10. Chloe was a giggle pot, she was curious, compassionate, a hug monster. She would also throw the best tantrum over not getting an extra biscuit or getting to go to the beach to dig holes as it was pouring out. I probably still have bruises from those typical 4 year old outbursts. Chloe was in most ways a typical 4 year old, she also happened to have an extra chromosome.....um...called...whatsit...oh yes, Down's Syndrome. I cared for Chloe and her brothers for most of my teen years; summers and Saturdays, Christmas and New Years Eves, (hey, was great money, and well, I liked the wee boogers.)
Little did I know my first real paid job would morph into my life long work, raising my three neurologically and sensory challenged children. ( Hmm, might need to reconsider that Spiritual entity thing after all;)
There is an innocence that envelopes our children, especially those who think differently. Sometimes that difference is marked by an obvious tattoo, like an additional chromosome, or a deleted long arm of one, or perhaps there is no known explanation but we know autism when we see it. There is also skimming close to the surface the nose of the personality that was there from conception, was there from crowning, there from that first, maybe labored fluid choked breath. The hardest thing we as humans will ever have to do is to reach beyond the perception and meet others in the middle. There is ecstasy in the connection, the innocence is a wonderful bonus.
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