Laurie and Debbie say:
Both of us are fans of NPR’s slice-of-life show, This American Life, and both of us separately heard last week’s broadcast, entitled “A Better Mousetrap.” (Free downloadable streaming audio available at the link.)
The theme of the show was “inventions,” and the piece that struck both of us was rather shoehorned in, as the tale of a mother who “invented” a way to deal with her son’s disability. The young man (now 20) has mosaic Down syndrome, a version of Down syndrome in which only some cells and cell clusters show the chromosomal abnormality. Mosaic Down syndrome can exhibit in a very wide range of symptoms: some people who have it are severely mentally challenged but physically “normal,” while others have all the characteristic Down syndrome physical issues and no intellectual deficit … or anything in between.
The boy in the episode was a “late bloomer,” not particularly obviously disabled. When he was in kindergarten, his mother told his teachers about his condition, and asked them to treat him “just like everyone else.” When she went to observe the kindergarten some weeks later, he was rolling around on the floor while all the other kids were sitting up for story hour. She asked the teachers why, and they said, “He likes to roll around on the floor and we don’t want to push him.” She was horrified.
So she didn’t discuss the issue with his teachers from then on. She had every reason to believe that they would not have put enough effort into teaching him and encouraging his mind. She also made the much more controversial and disturbing decision (this would be her “invention,” though it is hardly unheard of) not to tell her son. She says in the show that she felt he would use the diagnosis as a crutch.
When he was 12, he asked her, “Is there something wrong with me?” He knew that the other kids teased him, and he felt like something was out of kilter. At that point, she was so used to not telling him that she ducked … for another year or so. When she finally told him, she was expecting something awful: tears, recriminations, fury … something. What she gave him by telling him (according to what he says in the broadcast) was first a deep connection with his heros: “Storm! Wolverine! Rogue!” (all mutant characters from the X-Men comics), and then a measure of relief, and some help in dealing with the behaviors that got him teased. At 20, he sounds like a pleasant young man, thoughtful and somewhat slow of speech, while being perfectly intelligent and interesting.
Two things struck both of us, listening to the same show hundreds of miles apart.
First, despite two lifelong love affairs with honesty, both of us think that in this case the mother did the right thing … until he asked her and she didn’t give him an honest response. Why was it the right thing? Why could it ever be the right thing to lie to your child, even by omission? Because she was paying real attention to her own son as an individual and to the actual context in which he lived. Because she’s right that the school system would have intensified and magnified his differences from the other kids, rather than his similarities. Because we do so much “othering” and distancing of children with disabilities, none of which would have done him any good.
Second, how rare it is to get a real hit of how much the comic books can be a force for good. The X-Men, which most people in this culture would either dismiss or destroy, gave this boy a context for who he might be. If you listen to the show, catch the note in his voice when he says their names. If he was only reading adventure stories or watching sitcoms and shoot-em-ups, he wouldn’t have had something so powerful to hang onto.
This American Life
mosaic Down syndrome