I find myself in an odd position sometimes. Charlotte straddles the line between "normal" (what does
that mean anyway?) and "special needs". Clearly, she has a lot of special needs. But now that she's not on oxygen anymore, her needs are much less obvious to the random person we see on the street. It takes a medical professional to realize the tube running down her leg is a feeding tube. Usually people just smile and say, "Her backpack is so cute! Where can I get one?" {Her feeding pump and formula are kept in a backpack that she wears on her back so her tube doesn't pull out. And really? You definitely don't want this kinda backpack, lady.}
More often than not, people see Charlotte, and not her vast amount of special needs. We hear all the time, "She doesn't even look like a preemie!" {which makes me roll my eyes, but I know,
I KNOW, people are trying to be nice, so whatever} or "You'd never know how hard she's had it." Which is great and all, but it kinda ignores the incredible path we've had to take. Like we can just forget about the horrors we've experienced because she doesn't LOOK like she has special needs now.
On the other hand, it's true: Charlotte
doesn't look like she has special needs. I cannot imagine what it is like to be the mother of a child who so clearly has special needs, especially cognitive special needs. Nor can I imagine what it is like to hear people throw around terms like , "You're so retarded" {
spread the word to end the word} or, "Man, I was totally autistic!" knowing that people are comparing the syndrome your own child, the love of your life, has to an action or person that is being ridiculed.
Recently an article ran in GQ magazine, saying Boston had "a kind of Style Down Syndrome, where a little extra ends up ruining everything." There has been a very public outcry (
here and
here and
here and
here and I could go on), but only private apologies. It breaks my heart that people think that's OK. That someone thought, "Gee, look how witty I am!" instead of thinking about what a child with Down Syndrome, or an adult with Down Syndrome really
is.
Thankfully, not everyone in the public media feels this way. Nordstrom and Target recently ran these ads:
Look people, kids (and adults) with special needs are just that.
People first and foremost. They are children who have grandparents, parents, brothers, sisters, teachers, therapists, caretakers, and friends who love and play with them. They are children who need more help along the way. They simply
have special needs.
They are not defined by those needs, they simply have them.
That girl you see in the grocery store isn't "retarded". She is a little girl who
has "mental retardation" (a medical term that is often met with some controversy) or "intellectual disabilities" or "developmental delays." That boy on the playground isn't a "downs kid" he's a boy who
has Down Syndrome. Those children own those titles. The titles don't own them.
And it's never appropriate to throw around terms like
you own them when you clearly don't. So just don't do it. Just don't. Ever.
