Last spring my daughter Kelly came home from school in tears one day. A conversation about genetically modified corn had veered into a conversation about genetically modified people. Another student had said that "society would be better off if we could get rid of all disabilities." Kelly was more eloquent than most adults in explaining her reaction. "Sam seems pretty happy with who she is, so why would we want to change her? If you took away Sam's autism, you wouldn't have Sam anymore. I think [the other student] actually pities me. But I don't want to be pitied. I don't pity myself, and I don't feel sorry for Sam."
Yes, boasts Kelly's proud mom, she really said all that.
For the next couple of weeks, Kelly and I spent every evening trying to process what had happened. I felt nothing but indignation, and I lost a lot of sleep. The issues raised by this comment run to my core. It is not a standard-issue seventh grade spat about a kid inviting one friend for a sleepover and not another. This fight is about the value of human life, about the hubris of determining that value for other people, about the cultural implications of assigning the word disability, about compassion, and about the meaning of progress.
Even though my instinctive response was to agree with and intensify Kelly's outrage, I understand how commonly accepted is the premise on which the other student's comment rested, and I decided that Kelly needed to recognize as much in order to engage it. I told her that I think the other girl does not understand autism. She probably thinks it is like myopia; perform surgery to correct the visual acuity, and everything else about the person remains unchanged. Only families living intimately with autism know how absurd that belief is. I showed Kelly a line in a book she had just used to research Down syndrome. The author had included a FAQ, and the first question was, "Can DS be cured?" Answer: "Unfortunately, no. Researchers have not yet found a cure [italics mine]." This was written in a book presenting positive images of people with DS! Then we talked about the purpose of genetic research, which often is, indeed, to find ways of eliminating genetic variants, i.e., disabilities. These researchers believe they are acting out of deep feelings of compassion. In fact, I admitted, I probably would have said the same thing at the ripe age of thirteen.
So Kelly moved on. I could not. Who has the right to determine people's roles as burdens, contributors or net-neutral members of society. Eugenicists with the power to influence state policy (e.g., Hitler) have already trodden that path. We should have learned better! For sleepless weeks this diatribe, with variations, played in my head. I told everyone I knew who parented or worked with children with special needs about the incident. Everyone was sympathetic; many were appalled. Actually, I was surprised by some people I know well seeming more sympathetic than appalled, but perhaps their muted reaction segues nicely into my next thought. After a while I had to ask myself why my sleep schedule was still shattered. How long would I spend ruminating about a comment made by a child? Move on, Barb!
Finally I had a conversation that led to a revelation that led to sleep. The improvement in my disposition is ironic, because the revelation was not pleasant. What I realized is that I had felt, and sometimes still do, that maybe the child was right. I realized that I was fighting my own shame, not an enemy without.
It does feel shameful, but it also feels real. This weekend Sam screamed and cried for hours because a cake she baked did not rise properly. Every member of our household felt beaten down by the time she wore herself out. If I could have "fixed" her brain right then, I think I would have. In my quieter moments, like now, I'm horrified by the idea. But today she's survived a successful first week back at school, I'm well-rested, and her new Spanish teacher called on Friday to say that she handled her frustration during a vocabulary contest really well. Her team was not winning, but she asked to take a walk and get a drink, and when she returned she was no longer agitated. I only wish that I always felt so settled.