A point came up in the comments thread of my post on the Ashley treatment that I wanted to expand on a bit — talking about the developmentally disabled as “angels” of one sort or another. The parents of Ashley X, a girl with profound developmental disabilities, refer to their daughter as a “pillow angel.” and they are by no means alone in using the word “angel” among parents of kids with intellectual and developmental disabilities (I/DD).
There are two versions of this phenomenon, I think. One is how people who don’t have much familiarity with I/DD talk about it – the myth of the happy developmentally disabled child. And the other is parents and other caregivers talk about it.
I am not alone in being irritated when other people assume my child is happy and sweet-natured because he has I/DD. As it happens, he is generally happy and sweet-natured. But that has nothing to do with I/DD; it’s just his temperament. In fact, the majority of people with his Ridiculously Rare syndrome have issues with aggression. And, of course, he’s not always happy and sweet-natured. Sometimes he gets seriously pissed off, like when therapists use hand-over-hand with him. Or jealous when I hold my new baby. If I wake him up early from a nap, he’s a beast all afternoon. To assume that he’s happy all the time denies the full range of his feelings, denies the uniqueness of his temperament, and romanticizes the difficulties he and we face with his disability. Relatedly, he doesn’t “really know” something about goodness that the rest of us miss out on. Of course, there is a particular value in looking at things from his point of view, and I appreciate it. But he’s not better off because he has I/DD.This line of thinking in a way denies that he’s really a person, like the rest of us, who faces some extra difficulties.
With parents and caregivers, it’s something of a different issue. We are, of course, familiar with the full range of our kids’ emotions.
When we first got our kid’s diagnosis, we googled away. There were several parent blogs, most of which referred to their child as an “angel.” We found these deluded and kind of repulsive (and I know a few other parents of kids with I/DD who had a similar revulsion). Now I have much more sympathy for why they write that. But I still think it’s a bit problematic.
They write it because they know that people, on some level, don’t really understand how much they love their kid. And don’t believe anyone really could love their kid. It makes them (and me!) feel defensive when they do, in fact, absolutely adore their kid.
Part of it is also religious, I’m sure. I’m an atheist, and see my son’s condition as random. 1 in tens of thousands get his syndrome, somebody has to be that 1, and it was he. He didn’t win a scratch-off, he got this. If one is religious, one is tempted to read some meaning into the birth of the disabled child. Because if you think the Problem of Evil is tough to explain away, the Problem of Disabled Kids is much harder – you can’t say anything about free will. God’s plan includes making life more difficult for children? Hence another aspect of the temptation, I think, to call our kids angels.
But our kids are not angels. They are people. They have flaws. They make mistakes. I understand how calling them angels is a way of telling the world how much we love them and how grateful we actually are to have them and to communicate that they have brought some goodness in the world. But ultimately, it mislabels them.