Ragged Edge Online Home

« The Latest "Duh!" Study | Main | Summer Break »

Cure or kill, recovery or death

The issue of "recovery" seems to be driving public discussion about disability as never before.

I'd been waiting for some sort of national fallout from the DeGroot and McCarron murders. I'd been urging a reporter for a national news outlet to do a story, but hadn't gotten much anywhere. You know: it's old news now.

So this morning I see in my New York Times the op-ed article Autism's Parent Trap:
"If you commit all your time, your money, your family's life, recovery is possible. And who wouldn't do almost anything — mortgage a home, abandon a career or move to be closer to doctors or schools — to enable an autistic child to lead a normal life?"

"Here we go," I think.

Turns out, though, that Cammie McGovern (identified as the author of "Eye Contact," a novel, and who has an autistic son) is trying to debunk the recovery grail.

"To aim for full recovery — for the person your child might have been without autism — is to enter a dangerous emotional landscape," she writes.

I think folks with autism would have put it quite differently, and more forcefully -- take a look at any of the blogs that make up the Autism Hub (I especially recommend ballastexistenz). But I'll take McGovern's article. For the New York Times, it's probably as forceful a statement that will get printed.

I'd like to see on the Times's op-ed page some of the points made in the article by Dick Sobsey over on the Not Dead Yet site. Parents kill their nondisabled children, too, he points out, and parents who kill their disabled children are more like those parents than not. Both need help -- mental health help, he says.

Reinforcing the notion that parents are driven to killing their children (and sometimes themselves) by the lack of services is almost certain to do more harm than good. For people who are getting close to the edge of doing violence to themselves and others, certifying their thinking as rational and their behavior as justifiable increases the probability that they will go over the edge.

He adds,

When we say, "look what this poor parent was driven to do by the system and if things don't get better more of us parents may just do the same thing," we are holding our children hostages. We are collectively threatening to harm them if society doesn't take a little better care of us. (read article).

What I'd really like to see on the Times's op-ed page is an article examining how the "cannot recover" excuse is used to justify "removal of life support" and now, murder, which, seems to me, is a growing trend, or maybe simply one that's more and more coming out from under the covers. I've written about "won't recover" before -- here and here and here and here.

The new X-Men movie -- atrocious in a lot of ways, writes Robert McRuer on Ragged Edge Online -- gets at the "cannot recover" idea directly. On the big screen, it's "cure or kill." We get "mutant crowds (and their supporters) outside the pharmaceutical company, on one side of the street, yelling "no cure! no cure!" and mutant crowds, on the other side of the street, lining up for the injection," writes McRuer.

The disability rights culture wonks are grooving on "The Last Stand." But I'm almost afraid to ask: do most movie-goers see the Mutants' fight against cure as simply a kind of joke? After all, it's a comic. Right?


I believe the point was quite well taken -- by advocates for gay rights -- in the second X-Men movie when the sweet-faced mother of Bobby ("Ice Man") reacted in horror to her son's confession that he was ga -- uh, a mutant: "Bobby, honey, couldn't you just try NOT being a mutant?" It was funny, but funny because it echoed a ridiculous but very prevalent viewpoint that any proponent of gay rights could easily recognize. Not funny ha-ha. Funny queer. I believe the same could apply -- and did apply as friends and I watched -- to the idea of "recover or die". Perhaps the nudging and chuckling at the applicable statements that we did in the theater -- and the sense of dread during scenes where "cure" was being forced -- were a small but promising sign.

It is quite true, though, that presenting the "we don't want a cure" concept in superhero fashion creates a bit of a conundrum. Who wouldn't want to have wings or neato claws or to control weather or read minds? But disability so often comes down to what one CAN'T do (My super-power is not walking! Mine is not seeing! Mine is reacting unpleasantly to your perfume! Mine is breathing through a tube! Mine is behaving in a way that many people deem socially inappropriate!), and the suggestion that one must compensate for one's difference by being exceptionally great in some other area is dangerous. Yet . . .

Yet . . . I know that folks who have a very hard time grasping the concept of disability issues as a matter of human rights will have no problem swallowing (yes, I said grasping and swallowing) the very simplistic "mutant" cause (Ahem, we prefer to be called "people with mutation"). So perhaps if the basic idea that one has the right to be different, and to choose to remain different even when conformity is presented as an option, and to be "okay" with differences because they are a part of us as individuals, and to not wish death, even politely, on those who do not mirror an established image, can creep into the public consciousness, then !Viva la Revolución!

Good Lord, I'm such a nerd . . .

On the subject of hopeful articles, I'm trying to send this one out to as many people as humanly possible:

Parents of autistic children run amok

Though I do so hate leaving my name places....

Wow, thanks, Uly. (Oooh . . . there's your name again.) That is a very heartening editorial. I sent the columnist a thankful e-mail.