She spotted Joel and me leaving Starbucks one morning last summer and smiled. But the smile didn’t quite reach her eyes, and it lingered a bit longer than your regular stranger greeting in my town. Then she approached (startled) me while I was strapping him back into our van. I can’t even remember how she opened the conversation, but she was smiling and obviously felt “called” to say what she was saying about “praying for us” and asking our names. (Why can’t I come up with good aliases on the fly? I never was very good at improv…) Although Joel enjoys meeting new people, he was visibly confused by this convo too. I’m pretty sure my mouth was still hanging open by the time I got home.
At first I felt guilty: “Ugh, I let my beatific-special-needs-mom smile slip for a moment and just looked regular-mom-exhausted.”
Then annoyed: “WTH, she doesn’t know anything about our life.”
Then amused: “Hahaha…she didn’t know this was a GREAT day. We got Luke to nature camp on time, our move is almost complete, no one is screaming/crying/bleeding. Ha!”
Then pity. The same I guess she felt for us. Because how is it that the people who must mention that they’re praying for you don’t seem to understand that our lives are fleeting? Also, who knows what’s going on inside anyone else at any given moment? What we see is only temporary, ephemeral. I don’t exactly know what happens after we die, but I believe we leave these imperfect bodies behind. My friend calls these strangers the “well-meaning idiots” and we can usually spot them coming. I often try to cut them off with humor or, depending on the day, I’m extremely curt. On exhausting days, the “I don’t know how you do it” peeps get a “Badly, actually!” and the “What’s wrong with him?” bunch sometimes get a flat “Nothing” in reply. (Again, I was never good at improv…I need to rehearse a great blanket response.)
I’m probably most irritated by this interaction (nearly a year later) because it nearly blocked out a lovely little memory inside Starbucks that morning. A sweet toddler boy being awestruck by Joel’s bright red chair and light up wheels with a mom who did such a beautiful job of saying something like “what a cool way to get around!” Those are the moments I want to remember.
Pity of the disabled is insidious in our society. “Inspiration porn” stories frequently pop up this time of year of an athletic, kind-hearted kid asking a peer with a disability (usually intellectual) to prom. Is that cool? Sure. I just wish it wasn’t news. Has the teen with Ds/CP/etc. ever said “Thanks, but no thanks”? That’s an interview I’d like to see.
And it takes place in our churches, too. We’ve been very lucky/blessed by a supportive church community with leadership that works to include Joel and other kids with disabilities. But we have friends who have left churches and cut ties based on the overwhelming amount of “pity prayers” or utter lack of effort to include their disabled child. In my Bible, “Jesus said, ‘Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these'” (Matthew 19:14, NIV). He didn’t say only the developmentally-typical or only those with an IQ of 130 or above. He said children. And don’t get in their way.
Staying out of Joel’s way, and trying to stay two steps ahead to remove/rearrange barriers (both actual and logistical) is what our family team is all about.
Did I say I would pray for our parking-lot pitier? I hope so. But it doesn’t matter.
I pray for people without telling them all the time.