Philosophy, Disability, and The Stone (New York Times)

Some parents choose to use all possible means of continuing their child’s life in the hope that their child will beat the odds and eventually overcome problems. Others choose to let the children die to spare the babies the pain of the ordeal.

Forget the statistics and what others do or don’t do. We would like to know what our Sam’s chances are for reaching the point where his life is valuable to him. But there is no answer to that question. No one can tell you whether your son’s life is worth living from his perspective, or yours. We cannot say whether your son will ever breathe on his own or look at you. We can say only that the literature suggests the odds are stacked heavily against him.

At the end, Sam – the baby –  suffers in his final 20 minutes in this narrative, and the author years later realizes that instead of letting the baby die, it would have been kinder to kill him quickly. He writes:

This thought occurs to you years later, thinking about the gruesome struggle of his last 20 minutes. You are not sure whether it makes sense to talk about his life, because he never seemed to have the things that make a life: thoughts, wants, desires, interests, memories, a future. But supposing that he had thoughts, his strongest thought during those last minutes certainly appeared to be: “This hurts. Can’t someone help it stop?” He didn’t know your name, but if he had, he would have said: “Daddy? Please. Now.”

It seems the medical community has few options to offer parents of newborns likely to die. We can leave our babies on respirators and hope for the best. Or remove the hose and watch the child die a tortured death. Shouldn’t we have another choice? Shouldn’t we be allowed the swift humane option afforded the owners of dogs, a lethal dose of a painkiller?

I find these quoted paragraphs very troubling. The decision that the parents made, faced by suffering and a potentially lethal condition, is not simple. We – the disability community – should not pretend that their decision to let their child die is simple or that we know what we would have done in their place. I, anyway, do know not what I would have done.

But that pathos doesn’t mean ignoring the implications of this essay. I am struck by the ease with which agency is given to Sam and then removed within this piece. In the first quote, probabilities govern the decision. In the second quote, the author – again, a grieving father for whom I feel enormous empathy – provides Sam with enough agency to ask to die.

The piece was written in second person, following the rhetoric of the “thought exercise.” That’s how I reacted to it at first on twitter as I watched disabled friends reel in shock, pain, and horror at seeing their lives compared to that of animals needing to be put down. I’ve since been “checked” by an ethicist who told me that it’s Comstock’s real story. I am, it must be said, filled with pain at my mistake. I think back to my son’s first minutes and hours after he was diagnosed, just a few minutes after delivery, and imagine that the words were Trisomy 18, not Trisomy 21. I understand why he needs to use his training as a theologian and philosopher to work through the difficult choice he and his wife made. I’m not even going to say that it was the wrong choice. We need, however, to consider for whom else we might want to have empathy.

I feel for Comstock. The question of how to ease death is important and needs good discussion and surely better policy. In America, we tend to die very badly.

I also feel empathy for the child. I feel empathy for disabled people who read this piece. Here’s a storify from Alice Wong, featuring Ari Ne’eman’s careful disassembly of the piece and its core assumptions. In the efforts to “check me,” I haven’t seen a response to this. Where is the empathy for the disabled reader who encounters this essay as “Comstock wants to make it easier for me to be killed?” 

What happens in this piece is that the author uses a single story – written as thought exercise, but actually true – in order to abstract generalized principles about making euthanasia more available in cases of trisomy-18 and other potentially lethal or severely disabling natal conditions. It is not, to my reading, based on research into palliative care techniques for suffering infants, but rather the philosophical method of thinking through the ethical and moral implications of the incident. It is rational, except for when it’s emotional.

I see this willingness to dismiss the agency, indeed, the humanity, of disabled people as a too frequent consequence of certain strains of ethical and philosophical discourse. We can … we must … critique this tendency even as we feel empathy for the author struggling with his past.


PART TWO: Singer

The Comstock essay was published at “The Stone,” the philosophy opinion column at the New York Times. It is, to my knowledge, only the second disability piece ever published in “The Stone,” the philosophy section of the New York Times op-ed page. The other was, shockingly, by Peter Singer and a co-author, on the case of Anna Stubblefield. As I discussed last April, that essay suggested that if in fact the a person can’t consent due to disability, they can’t really be raped so long as they enjoy it (no, really, go read the essay). Again, agency is granted only in ways that serve the broader argument about the lack of agency for disabled people.

Shelley Lynn Tremain has written at Disability and Discrimination about her experience pitching “The Stone.” She was told that the editor did not want to publish on disability and philosophy, “In part due to my belief that there is not an appropriate platform for writers with disabilities, and writing about disability, I am planning a separate series devoted to it.” That separate series has been amazing and important, yet here we still have a “philosophy” site from which disability is excluded … except when it isn’t.

I’ve received pushback for tweeting that the Comstock essay is indicative of a problem with how philosophy, as a discipline, discusses disability. If I’m wrong, it’s due to the intense veneration that Peter Singer still receives. Too many people are willing to regard eugenics and the core humanity of disabled people as a subject for abstract debate, often one isolated from the realities and complexities of real life.

For example, in a link provided me by Tremain (who comments in the post), is Justin Weinberg, an associate professor of philosophy at South Carolina, writing about what an excellent public philosopher Peter Singer is:

“Philosophy always causes offense—perhaps it should cause offense,” says philosopher Peter Singer, Ira W. DeCamp Professor of Bioethics at the University Center for Human Values at Princeton University, in a recent interview, below.
Singer is one of the world’s most well-known living philosophers. Some philosophers are clearly bothered by Singer’s renown, in part because he holds philosophical views that many philosophers disagree with. But, of course, that is something he has in common with every other philosopher.
I think that Singer makes for an excellent famous public philosopher.

But it’s not just about the “right to offend.” Singer has long based his arguments about disability based on ignorance about disability. He assumes a lack of happiness in situations linked to disability, whether imagining it for himself or his child. Yet every time he encounters real people (see this amazing essay by Harriet McBryde Johnson), he admits maybe disabled people are happy and his assumptions are wrong … before quickly reverting back to his earlier assumptions. Today, decades after disabled people first engaged him in the spirit of rich philosophical debate, his positions have not especially changed. The assumption that “offensive speech” must be doing something right is.

I am deeply troubled by what I see happening in public philosophy when it comes to disability narratives. I am sure there is much more than what I see, in part because I listen to disabled philosophers. I hope The Stone, and other public spaces, do likewise.