I was at a parents' gathering recently, and one mother I knew only as an acquaintance approached me.
"You are amazing," she said to me.
"Um, thanks?" I responded, not quite sure where the compliment was coming from.
"You are an amazing mother. You work so hard. You have a child with a disability, and I know that's such hard work. I could never do it, but here you are, doing it every day!"
As she said this, I was holding my daughter Maybelle, who's a 5-year-old with Down syndrome. She was just hanging out in my arms, examining my hair. "Ponytail!" she announced. "Yep," I said. "It's a ponytail."
"See!" said the other mom. "I admire you so much."
Living in the South, this is a familiar interaction for me. I call it the "bless your heart" phenomenon: it's a way for people who are unfamiliar with Down syndrome or other disabilities (particularly intellectual disabilities) to acknowledge that I have a life different than theirs. They want to bless my heart, to give me credit for my efforts, for my living a life they find unimaginable.
It's a sweet conversation, one very different than what my friends in other parts of the country report. In New York City, for instance, it's not uncommon for one friend to have conversations that involve people staring at her son and saying, "Didn't you have prenatal testing?" It's a conversation that assumes that if my friend had known her child was going to have Down syndrome, she would have terminated the pregnancy (and let me assure you that the decision to terminate a pregnancy isn't an easy or automatic one, so this sort of questioning dismisses the decision-making of many women).
"Bless your heart" is friendlier. It's an effort to be meaningfully kind, and I appreciate that effort. And yet it's still uninformed and based on stereotypes about people with disabilities. Maybelle becomes less than a child. She becomes a kind of burden, a burden I'm willing to carry because I'm special, different. "I could never do it," people will say to me. They could never manage this burden, but I do it because I'm not like a normal person.
And yet of course I'm like a normal person. In fact, I am a normal person. And so is my daughter. She's not a burden. She's a child, offering the same kinds of joys and irritations that any child offers. Because she has Down syndrome, she and I do experience some different challenges. In some ways I do more work than the parents of typical kids (assuming that the typical kids don't dramatically resist sleep, bully their friends, end up in juvenile detention, have some medical condition, etc. — stuff that of course we can't predict). When you have a kid with Down syndrome, you have to do early intervention therapies. You have to become an advocate in the school system. You have to work to teach the child things that are intuitively obvious to lots of other kids, or that other kids can hear once and incorporate into their repertoires.
But this doesn't require blessing my heart. A more interesting conversation would be if they asked me if Maybelle's in preschool (yes), or if I have a job (yes), or how much she likes dance class (a powerful, intense yes). They could challenge their own lack of knowledge, and I'm happy to share what our lives are like.
At the parents' gathering, I said to the other mother, "It's actually not that hard to raise Maybelle. She's a pretty easy kid to be around. I have a good time with her. Down syndrome isn't as bad as you think."
"Huh," she said. "I wouldn't have guessed that."