What About the Boys and Girls?
Recent autism list contributions by Teresa Binstock comment wryly on the “political benefits of diluting the definition of autism.” (That is to say, given a possibility that some aspect of modern life—say, pollution—might be causing an increase in the number of autistic children, some parties would have an incentive to try to prove that the numbers are not increasing after all.)
It’s not my purpose right now to wade into that controversy, but rather to talk about politics in general as it involves disabled kids. Because there are a great many such controversies, and while people take sides and go at one another’s throats, the kids we’re supposedly fighting about are in danger of being pushed off the stage.
There’s the dispute over whether it’s better to pursue remedies or to accept/embrace disability, which I talk about elsewhere on this site. There are more abstract debates, such as how much weight to give to genetics in explaining various disorders, and whether research in that direction is likely to make a difference. (“Politicians like genetic determinism as a theory of disease because it substantially reduces their responsibility for people’s ill-health.”) With vaccines, of course, there is the ongoing battle between “fear mongers” and “corporate shills.” When a new therapy stirs enthusiasm, some people become so wedded to the hope it inspires that they view skepticism as a personal affront. I’ve known therapists and educators espousing one approach or another who invested a significant portion of their energy in criticizing other providers whom they viewed as competition.
Although I think politics is an ever-growing—and necessary—part of the national conversation in general, I wish it didn’t intrude so heavily into the subject of how to help our kids. We cannot get away from it, however. You don’t need unusual skills at reading between the lines here to see that I too pick sides.
I suppose that means I’m as much at fault as anyone.
During the time I was looking for literary agents and publishers for my book, some of them said they liked my project because Joseph’s story would tie into the argument over healthcare reform. Presumably, they thought it would fit the narrative supporting increased government involvement.
As I see it, WATB supports the opposite conclusion. At least, the position our household took during the events described was that we had no need for bureaucrats (administrators in our HMO, for example) who were always denying access to the treatments we wanted. We needed information and professional guidance, yes, but the decision on what to do was ours. We knew we were going to be the ones living with the consequences. A lot of what we believed needed to be done for our son was not approved by insurance, and we were just lucky enough to be able to sacrifice our standard of living in order to pay for it ourselves (and to solicit donations to help pay for it). The way I see things, bean counters are never going to have the same priorities as patients.
New families coming into this sphere with young children in need of help can be forgiven if they see madness all around them. All these battles we’re fighting are relevant, and it seems to me they do need to be fought. But they are very seductive, too. While we stake out our positions and look for supporting evidence and burnish our arguments, time is passing. Our kids are getting older. New disabled kids are coming along. And nothing is changing in terms of what we offer them.
Tags: causes of disability, Holland poem, kids, nature vs nurture, politics, vaccine controversy
