This morning, an article was brought to me via The Mighty (which if you’re not following, follow them!) The author of the story, Liz from Our Version of Normal, pointed out one something that happens in the disabled community –
It may just be me, but it seems with all the heavy promoting by various organizations, parents and other people for the acceptance of children with special needs, that we, as a whole, are trying to sell everyone a better, more desirable version of the child and their disability.
Here, go read the full article, then come back…I’ll wait…
Okay, let’s go on then.
I found myself totally and completely agreeing with this mother. This mother who has to feel the pull of one child being more accepted than the other child even in their own special community that should be celebrating both children. How heartbreaking must that be? How frustrating that must be.
And yet, people do it to us all the time, even within our own communities. Your child has autism? Someone will ask what their savant skill is. They have to have a savant skill, they saw it in the movies. (Spoiler – not every autistic person is “Rainman”.) People will send you clips of people with autism who also play an instrument amazingly, or draw amazingly, or do something amazingly – as long as that “something” is deemed worthwhile. (Quoting the entirety of their favorite movie isn’t deemed as amazing. Nor is the ability to strip down to underwear in 1.2 seconds.) If your child has Down Syndrome, you are sent clips of other people with Down Syndrome who have become actors, models for Target, etc. Cerebral Palsy? Here’s an article of a person with CP going to college and becoming valedictorian. Is your child blind? Here’s a news clip of a blind person making it to the top of Mt. Everest! Missing a limb? Here’s seventeen athletes who are missing limbs!
Basically, your email and social media sites become a handy way to dump inspiration porn at you.
And yet, as much as people want to throw feel good stories your way, stories of people with similar disabilities doing so much more than your loved one will ever be able to do in an attempt to cheer you up…
…some of them don’t want to hear about your realities.
They don’t want to hear the real life in the trenches stories you have, of sleepless nights, worries, ER visits, screaming fits that last two hours, feeding issues, doctors blowing you off, schools shortchanging your child, the panic attack you had while showering, or poo.
As I told a friend who’s going through her own medical shit (literally) yesterday – “Anyone who doesn’t want to hear poo stories isn’t a true friend.”
Social media loves to gorge themselves on stories of the preemie baby who doctors say may never walk/see/do origami grow up to defy all odds and be a gold medal Olympic champion. We’ll share the shit out of those stories every day. But to parents like me, parents who’s child’s most exciting achievement in life this year is pooping five times in a week, those stories just remind us “Not my kid.”
No one wants to hear that. I’ve been told I shouldn’t limit Maura by my thinking, that she could live independently if we just try hard enough. Oh sure, Maura may have an IQ of 48 and leaves the doors open in winter and is almost 12 with the mental age of your average preschooler but with less of a vocabulary – but we shouldn’t sell her short with our negative thinking! Here’s fourteen more inspirational articles about people with disabilities defying the odds!
In the name of love….stop it!
To the section society that is all about celebrating diversity and promoting acceptance, I beg of you, accept us too. Accept those who aren’t in Target ads, who don’t have a savant skill, whose biggest achievement this month is trying a new food or finally being able to sit up on their own.
Be like my people. My friends who have the new catch-phrase “High five poopy!” after I posted that it’s Maura’s new thing to say every time she poops (seriously, five times in seven days this week? That’s proof that God answers prayers!) My friends are awesome, and have celebrated every one of Maura’s achievements, no matter how small. My friend, who comes over to my house and goes to use the hall bath (aka Maura’s preferred toileting spot) and just says “Yeah yeah, I know, no big deal!” as I try to warn her about the current state of it. (Really, I clean that bathroom constantly…but…Maura.) My sister, who offered to watch the teens and Maura so I could go to Spain, and was all “Gee, why would you be stressed and need Prozac?” sarcastically as Maura wandered by with a chainsaw (okay, that might be an exaggeration, we don’t own a chainsaw. But she did try to cut open the watermelon with the butcher knife, same reaction on my part.) My dear sweet college friends, who’d be all “Hey, it takes some good coordination to start a chainsaw, good job Maura!” if we did have one and she did start it. My cousins, who’d be all “Yep, she’s one of us. We love chainsaws too.”, then would let her steer the tractor (because every girl should know how to drive a tractor.)
These people, who accept my anxiety levels and celebrate Maura’s newest skill, no matter what that skill is – these are the people who show true acceptance. These are the people everyone else should be like. These are the people who listen to my poo stories, and are true friends. They don’t tell me I’m selling Maura short, or tell me to try harder to make her appear less disabled. No, these are the people who “high five poopy” along with us.
And that is true acceptance.
P.S. – please don’t gift us a chainsaw.