Some thoughts on suffering, “cures,” and ethics

Scott Alexander, a psychiatrist who has worked extensively with people with autism argues that yes, we do need a cure for autism:

Would something be lost if autism were banished from the world? Probably. Autistic people have a unique way of looking at things that lets them solve problems differently from everyone else, and we all benefit from that insight. On the other hand, everyone always gives the same example of this: Temple Grandin. Temple Grandin is pretty great. But I am not sure that her existence alone justifies all of the institutionalizations and seizures and head-banging and everything else.

Imagine if a demon offered civilization the following deal: “One in every hundred of your children will be born different. They will feel ordinary sensations as exquisite tortures. Many will never learn to speak; most will never work or have friends or live independently. More than half will consider suicide. Forty percent will be institutionalized, then ceaselessly tyrannized and abused until they die. In exchange, your slaughterhouses will be significantly more efficient.”

I feel like Screwtape would facepalm, then force him into remedial Not-Sounding-Like-An-Obvious-Demon classes.

I didn’t know that there was a movement against cures for autism, but Alexander objects to the notion that people with autism who spend much of their time banging their heads against walls or trying to chew off their limbs are that way because they’ve been treated badly. He argues, reasonably, that (1) some children with autism are that bad off at home with parents who love them and are doing their best, and (2) this society isn’t going to come up with fantastically functional institutions any time soon (see: nursing homes). His best point, the one I want to focus on, is this:

Let’s taboo whether something is a “disease” or not. Let’s talk about suffering.

Dropping the binary distinction that assigns various people various mental diseases or disorders would seem to me to be a step forward in our thinking about how the mind works, at least in many cases — I’m thinking of depression, for example. And I agree that it is far better to approach people by considering whether they are suffering than by assigning them an identity.

Autistic people suffer. They suffer because of their sensory sensitivities. They suffer because of self-injury. They suffer because they’re in institutions that restrain them or abuse them or just don’t let them have mp3 players. Even if none of those things happened at all, they would still suffer because of epilepsy and cerebral palsy and tuberous sclerosis. A worryingly high percent of the autistic people I encounter tend to be screaming, beating their heads against things, attacking nurses, or chewing off their own body parts. Once you’re trying to chew off your own body parts, I feel like the question “But is it really a disease or not?” sort of loses its oomph.

Here’s the problem, though: If you want to talk about a “cure,” then it seems to me you had better be talking about a disease. A disease is something a person either has or does not have, and which can, in theory, be removed or prevented. Suffering is simply a part of the experience of being human. There is no “cure” for suffering — not one that medicine can provide. We can alleviate suffering; we can help people in need. But we can’t cure suffering.

That distinction isn’t merely semantic. Alexander argues that “Nobody is entitled to another person’s life,” and that “parents have the right to decide if they want to have an autistic child or not.” Available preventatives include abortion, but he hopes, short of that, for some kind of “genetic engineering” that will “turn off” the worst aspects of autism. But if autism is suffering and not a clearly delineated disease, what’s the minimum standard for genetically engineering our children? Who decides what constitutes suffering? Autism is already defined as a “spectrum,” on which Alexander places himself at the mild end:

I have some very minor sensory sensitivities, and they drive me nuts. But at least they only metaphorically drive me nuts, That’s because I’m an independent middle-class person who can throw money at problems to make them go away. I have no tolerance for stray noise, so I pay a little more than I should for housing and live in a quiet area outside town. I can’t stand constricting or scratchy clothing, so I only wear loose-fitting clothes, extend the collars, and cut off all the tags. It works pretty well – but only because I have a lot of control over my life. Put me in an institution where other people manage everything about my daily routine, and my life would fall apart. And my sensitivities are a fraction of a fraction of what real autistic people suffer.

I get that. I really do. So I ask: Would Alexander want his parents to have “cured” him? I’m not sure I would. All kids are a pain in the ass: How much of a pain in the ass is too much of a pain in the ass? At what point do parents have the right to genetically re-engineer them in the name of alleviating anticipated suffering? Somewhere between needing to cut the tags out of clothing and chewing off body parts, a line needs to be drawn. Who gets to draw it, and where?1

Alexander sort of nods in the direction of medical ethics, but he does so in a way that makes me more nervous than if he had said nothing at all: “Everything about genetic engineering raises thorny scientific and ethical quandaries, and I can only hope we don’t drag our feet in creating the eight-foot-tall IQ 300 supermen who can solve them.” I’m afraid I see no evidence that intelligent people are the ones to solve ethical problems, or even that ethical problems can be solved in the manner of physical science. “Society is fixed,” he says, “but biology is malleable” — meaning that it will be easier to cure diseases than to build humane institutions. The principle is valid even if I think the phrasing is cynical, and we’d better apply it to our thinking about medical ethics, as well. The only way this society likely to “solve” those problems any time soon is by ignoring them.

In the meantime, I’d ask this: If you’re going to define humane problems (suffering), propose humane solutions (kindness, care). If you’re going to propose medical solutions (cures, genetic engineering), make sure you’ve defined a medical problem (a disease) for them to solve. And please, please, please: if you’re talking about doing things to people against their wills, define your terms and categories with the utmost rigor.

  1. Alexander throws out the figure of one in a hundred, but that’s the estimate made by an organization trying to raise awareness of the number of people on the “autism spectrum,” which includes mild Asperger’s. He then says that forty percent of those people need to be institutionalized — one out of 250 people overall. That can’t be right. It gets worse when you toss in statistics like a 96% unemployment rate among autistic adults, as someone did in the comments on Alexander’s article. Suddenly you’ve got a whole lot of people with a wide range of “suffering” and we’re talking about curing that “suffering” by genetic engineering? We need to define some categories, and fast.
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