We decided to pick up Italian last night. This pregnancy has turned me into quite the lackadaisical chef and so, on nights when I stand too long– staring into the cupboards with glassy eyes, an unbecoming sneer on my face– Greg suggests we find sustenance elsewhere.
The place was fast and casual. Order up front, pick-up at the counter. I chatted with the check-out gal who oohed and aahed at Simeon as he wheeled through the line, waving to the girls working the pasta station and bumping (not too gently) into the back of my legs. I offered her a gift card, apologizing because I wasn’t sure how much it was worth. She leaned in with an understanding look and said, “Don’t be sorry– you have enough to worry about.” Then gesturing towards Sim she asked, “Does he like cannoli? I think he needs some of our cannoli bites!” And with a wink she grabbed a bag of crumbled cannoli shells, dusted them with sugar, and tossed them into our bag.
Wheelchair perks. Kids like mine get them all the time.
Like the a giant sugar cookie, passed to him surreptitiously, by the guy working the meat slicer at our local grocery store. “Shh…don’t tell” he had whispered.
Or the Lego set given to our friend’s daughter (also a wheelchair user) at the toy store.
Or the meals paid for by strangers when families like ours are out to dinner.
It doesn’t happen every day and it’s certainly well-meant, but there’s been something about these handouts, these unsolicited gifts, that’s always made me a bit uncomfortable. There was something about wheelchair perks that worried me, I just couldn’t put my finger on why.
Until I talked to a friend of mine.
She has three children and her oldest, now a teenager, has spina bifida. Her daughter uses a chair just like my son. We were chuckling about the perks, the sweets and the the special treatment, when her voice dropped, “It can be hard though– especially when you have other kids…”
Then she told me through tears about her family’s trip, years ago, to Disney World. How Mickey Mouse, with his over-sized head and bright red pants, had walked past mobs of patiently waiting kids, making a beeline for her daughter. How he knelt beside her wheelchair as everyone smiled and snapped photos. How onlookers watched with knowing expressions because this was as it should be– this little girl probably needed the time with Mickey more than anyone.
All while her two younger children stood on the sidelines and watched.
And yes, my friend tried to push her other children forward and yes, they eventually met Mickey too and yes, they got a lovely family photo, but there’s no way around it– sometimes special treatment is troubling.
Troubling because our children are not more deserving, simply because they experience disability.
Troubling because our child’s typical siblings are often ignored by well-meaning adults. Adults who don’t realize that special treatment sends a message of otherness that can be just as alienating as ignorance.
Troubling because sometimes it is a reminder. On days when we have forgotten that our children are different, the free cookies tell us that the world remembers.
Troubling because deep down, we know it won’t last forever. The world will not bend over backwards to make a man in a wheelchair feel “special,” nor should it. So when will the perks stop? And how will my son feel when they do? Forgotten? Isolated? Outgrown?
I don’t know what the answer is. I’m not sure I even know the question. But I do know that the pendulum has swung and, while I am thankful that in today’s world kids like mine are acknowledged and valued rather than disregarded and ignored, I still hope that someday my little boy, and others like him, will be expected to pay for their cookies.
And wait patiently for their turn with Mickey Mouse.
Just like they have to wait their turn at home.
Just like their brothers and sisters.