Global Crisis

Anne and Bobby, used by permission

I love this phrase. I love the way it respond to the kinds of positive language that sure, it's much less hurtful than negative stereotypes, but that still flattens our kids into stereotypes. I want, I demand, that both my children have the opportunity to be whole people.


Anne writes:

When I hear, “you are a special mother,” “God bless you,” and “I don’t think I could do it,” I don’t scowl in anger or digress into the rant burning on my tongue. I mutter something about the wonderfulness of Bobby and hastily turn away, ending the awkward situation.
But don’t get me wrong, the anger is lurking.

Bobby, after all, is right there, listening to these platitudes. I give my son a constant stream of feedback: about how strong he is for having survived three heart surgeries, for how funny he is when he silly-dances, for how unthoughtful he is when he plops down in the middle of a store and refuses to walk. And most of all, how happy I feel when I am with him.

Then a stranger comes along. They only see the burden of Down syndrome and can’t imagine the abundance of what Bobby gives in our relationship. They never think that I have given up a career because I can’t bring myself to give up time with Bobby.

These comments mirror a lot of my own experiences as an active father of a boy with Down syndrome. Not the selfless part, because I haven't given up my career, but the praise of my fatherhood which reveals a sense that Nico must be an unspeakable burden. He's not. There are challenges. The challenges are different and in some ways more intense than the challenges we encounter with Ellie or people do with most neurotypical kids. Until reading Anne's essay, I hadn't quite fixated on why these remarks bothered me so much - it's not humility at being over-praised, but the image of Nico and parenting Nico that praise engenders.

Anne also links this back to her mother, pointing out that the "Selfless mother club" is a bigger issue than one might expect:

My own mother inducted herself into the Selfless Mother Hall of Fame. Eight children. Thousands of loads of laundry. Thousands more meals cooked, dishes washed. My head spins at the organization required, the creativity used in making do, the going without that both of my parents did. I respect it all, but I find it hard to ooze gratitude when my mother, over and over and over again, recounted her sacrifices to me and reinforced all the ways that I was not worthy of her gifts. She was so steeped in her pot of resentments that she could not give without demeaning me.

That sounds hard, but I think it's important to show how these issues we encounter with such sharpness in the disability community can be used to look at society more broadly.

Overall, this essay fits into the kind of writing and representation that I'd like to see more frequently.

Neither lachrymose nor saccharine, it demands that both Anne and Bobby get treated as whole people.