The College of Charleston marketing folks are making little one-minute videos to highlight different parts of the school. Here's the one they just made for WGS:
One of my pet peeves as a parent of a baby with Down syndrome is the belief out there in the world that people with Down syndrome are naturally sweet. I encounter this belief in various ways. When I told one potential babysitter that Maybelle has ds, she said, "Oh, my mom works with kids with Down syndrome, and they are so sweet!" In the months after Maybelle was born, Biffle's mom routinely told me how sweet people with ds are. An acquaintance--the mother of a challenging teenager--quipped, "Well, at least she won't be backtalking you when she's thirteen!"
I find this belief troubling for a couple of reasons. First of all, it's reductive. It flattens Maybelle's personality, implying that she'll have one mode or valence, and that will be sweetness. Sometimes this is offered in a kind of compensatory way: "It's too bad that your daughter's fucked up, but at least she'll be sweet!" And to that I say, it's just not true. Of course she'll be backtalking me when she's thirteen--she'll be a teenager with hormones and opinions and a desire to differentiate herself from her family. Perhaps, as my dad has always warned me would happen, she'll start defining herself as an Alex P. Keaton-style conservative. Or perhaps Biffle and I will be too mainstream for her and she'll be playing bass for a punk rock grrrl band. It doesn't matter--the fact is that she will be a complex person in the world with thoughts and feelings all her own. She'll have sweet aspects to her personality and aspects to her personality that will make me want to pull my hair out. And good for her!
The second reason I dislike this belief is that it suggests that sweetness is just a symptom of Down syndrome. As it turns out, Maybelle is a really easy going baby. She's interested in the world around her, she likes going places in the car and stroller, she's invented some fun games (like pulling off glasses and sucking on my lower lip), and she's a good sport about all the therapies she has to do. These are aspects of her personality, some of the things that make her uniquely her. They aren't symptoms of a disease. The belief that all people with Down syndrome are sweet means that Maybelle doesn't get any credit for her personality traits, and I find that wrongheaded and unfair. I think it's one of the more benign manifestations of the ways in which we view special needs people as not fully human.
"So, he had his favorite meal, played a show and died in his sleep. We thought, that's not too bad."No. That's not too bad.
Everyone knows the real opening sentence to Slaughterhouse-Five is the beginning of chapter two: