When perfection is deadly

Disclaimer: This post includes discussion of murder, suicide, and “quality of life” discussions. I’ve categorized it as one of my “legal” posts, even though it doesn’t contain any specific reference to the law, because I’m discussing attitudes that tend to have a lot of influence on public policy discussions.

In the last couple months there have been two high-profile deaths within the disability community that have caused controversy over the value of the lives of people with disabilities: the suicide of Christine Symanski, a young woman with quadriplegia, and the murder of George Hodgins, an autistic young man who was killed by his mother (who then committed suicide).

Although these deaths outwardly seem very different, both of them share two very important features: the media coverage of these deaths tended to take for granted that Symanski might find life not to be worth living and that George’s mother would both find herself stressed to the point of suicidality and wish to end George’s life as well. I also think there’s evidence that both deaths might have been caused, not from lack of adequate services, but from the persistent fixation on seeking more and more services and treatments in an attempt to either cure or fully mitigate the disability, without which life is characterized as not worth living.

Christina Symanski was paralyzed due to a spinal cord injury in her early 20s. After her injury she spent some time in a nursing home before successfully obtaining personal care supports in the community. Even then, however, she apparently felt that her life was more or less over, was resigned to never having a job or a romantic attachment, and decided that she would stick around for a predetermined amount of time to wait for a cure for her injury. When that time period passed, she chose to end her life by refusing food.

By far the best coverage I’ve seen of her death are Bill Peace’s posts on Bad Cripple, who wrote a poignant piece in the immediate aftermath of her death as well as some wonderful criticism of the media’s disproportionate focus on the very small number of people with physical disabilities who want to die. But Bill also crucially pointed out that Symanski’s suicide, and the reasoning behind it, is inextricably tied to our culture’s singular focus on cure as the “solution” to disability:

Disability is a fate worse than death. It is a singular experience, a tragic experience. The “job” for all people with a spinal cord injury is to seek a cure to paralysis. No risk is too great. No procedure too risky. No amount of money is too much. No matter what the focus is always on walking. High tech medicine is embraced even if it is shockingly expensive and impractical.

The motivation behind George Hodgins’ murder is somewhat less easy to analyze because, unlike Symanski, George’s mother did not keep a detailed blog discussing her feelings on the matter. However, the circumstances are in some ways very similar: as in the case of Symanski, much of the media/blog coverage not only effectively erased George from the story of his own murder but also focused extensively on how “understandable” George’s mother’s act was in light of the inherent “stress” of caring for an adult with a disability and the lack of “services” available to help parents (as in this example from Huffington Post).

But in fact George’s mother had access to services well in excess of what most mothers in her situation – almost none of whom kill their children – have. She lived in an expensive neighborhood in Sunnyvale, CA, was still married to George’s father, and had recently withdrawn her son from a day program that was willing to take him because she felt it was insufficiently “community oriented.” Isolation from the community is certainly a real harm, but it’s clearly not so horrible that death would be preferable.

However, this it’s not uncommon for a parent’s fixation on “the best” for a kid (with or without a disability) causes him or her to lose all semblance of perspective (and in this case, the word “perspective” is a massive understatement). This phenomenon is particularly common among upper-middle-class parents of kids with disabilities. To paraphrase Bill Peace, the “job” for all such parents of kids with disabilities is not just to provide for basic needs but to seek the best services. Nothing short of this is adequate. No amount of money or effort is too much. No matter what the focus is always on “maximizing functioning.” You are at war with your child’s disability and without an arsenal of supports and services to mitigate or cure it, you are letting the disability win and your child’s life will not be worth living. Of course, even most parents who fall for this sort of thinking don’t kill their kids, but I don’t think it’s a stretch to suggest that this sort of perfect-or-nothing thinking might have been part of George’s mother’s decision to end her life and that of her son.

In both George’s and Christina’s cases, the media not only bought into the myth that life with a disability (or caring for someone with a disability) is intolerable, but in fact repeated the same problem thinking that lead to these people’s deaths. In Christina’s case, it was their focus on disability itself as the “problem,” from which it would logically follow that the only acceptable “solution” is a cure and that social and personal care supports are of only marginal importance. In George’s case, it was their focus on the idea that the services available to his mom were actually so inadequate that the mother had no option but to destroy her mental health and that she was the only person willing or able to ensure that he had a minimally acceptable life (and thus murder-suicide was preferable to simply withdrawing or taking a break or even committing suicide without murdering him as well).

At the risk of sounding harsh, I think it’s important to shift the conversation from “services” and “cures” into expectation management. I don’t mean that people should expect less of people with disabilities, but that people should expect less of life. If they’ve been looking for a cure for decades and they still don’t have it, you should probably start just getting used to having a disability, with all the discrimination and necessary lifestyle adjustments that may entail. If your search for the best, most state-of-the-art programs for your child is severely interfering with your ability to be a loving, stable, non-abusive and most of all non-homicidal parent, just give up and settle for something. You can tell yourself it’s just temporary until something better comes up. Your kids will forgive you and probably won’t even hold it against you in the first place. If your friends hold it against you, get new friends.

What’s remarkable is that this sentiment is so hard to express these days without actually provoking the same kind of reactions that create the sentiment in the first place, like “telling parents to settle for bad day programs is minimizing the harm they can cause,” or “don’t tell people they’ll never be cured, why shouldn’t they have some hope?” Death is not just worse than trivial harm; I find it downright frightening that anyone thinks “x is not worse than death” is equivalent to saying “x is trivial.” And encouraging people to focus on the remote “hope” of a cure, instead of helping them shift their focus to the highly possible and highly likely prospect of finding value in their lives as they are, isn’t fostering hope, it’s fostering despair.