Bioethics Forum Essay
I was invited to join the Seattle Growth Attenuation and Ethics Working Group — collective author of the lead article in the current issue of the Hastings Center Report — but I begged off, claiming I had too many other things on my plate. True, but the bigger reason for avoiding the project was my suspicion that I would be torn asunder by the complexity of growth attenuation for persons with disabilities. Reading the essays from the group reveals that instinct to have been dead-on.
As a person who has long advocated on behalf of people actively made disabled by charitable pediatric attempts to make them more normal, I breathed a sigh of relief when reading the group’s recommendation that growth attenuation be registered and studied in a way that could provide meaningful outcomes data for those considering the treatment. If we really want to respect people who become patients, we have to take science seriously. Then we might also really have to articulate the quality-of-life outcomes we desire, and we might keep those outcomes before us and not get lost in the question of patch versus injection. I’ve grown so frustrated by the lack of science in medicine that I’ve actually come to believe that the practice of evidence is the practice of ethics.
At the same time, I found myself doing what members of the group naturally also did: working from the anecdotes of my own life. I flash to my teenage years, in which I helped my mother and sister care for my maternal grandfather, a saint of a man laid low not only by Parkinson disease but by muddled drug administration carried out on him in the name of charity and progress.
While I was in high school, my grandfather lost the ability to communicate with us. He required tube feeding, diaper changing, and turning to avoid bedsores. I am not sure that getting up in the middle of the night by alarm to help my mother turn my grandfather was what led me to a life of disturbed sleep patterns. But I am convinced it led me to a more complicated relationship with “disability rights” than I have ever let on.
On the one hand, as my grandfather imbibed Ensure through a feeding tube, I imbibed a disability rights perspective. That is to say, I came to a lived understanding that a person with profound impairments can still be a full-blown family member, and an understanding that medicine often participates in making individuals more disabled — through direct physical harm, like that committed through experimentation, but also through an unwillingness to consider how medical professionals have (had) a too unilateral notion of medical success.
On the other hand, I naturally share Norman Fost’s skepticism about outside groups telling a family what is Good. In my case, it was not disability rights groups but the Catholic Church that I came to resent, as it seemed to put us in the position of having to endlessly torture a man we could not have loved more by treating what I think came to eighteen rounds of pneumonia.
Discussions of “dignity” around disability have always haunted me. When I heard strangers speak of “death with dignity” around my grandfather, I never could figure out what that meant. Today I think maybe “dignity” is code for “no shame,” and so when I encountered “dignity” in the group’s report, I found myself longing for an honest confrontation with shame already — an honest investigation into how shame might be effectively disabled. I want such a confrontation especially within pediatric endocrinology, a field that we must remember includes many who still treat “idiopathic short stature” with human growth hormone against the evidence, a field that still largely supports “fixing” ambiguous genitalia against the evidence.
And yet it isn’t just about shame, is it?
It sure would have been easier had my grandfather gotten smaller as he got more impaired. Hoya lifts have gotten better, but they’re still clunky, as I know because my mother now uses one for my dad.
So what useful thing can I really add here? Maybe just that when I think of Ashley, there is one image I become immediately fixated upon: My mother always cleaning her father’s glasses before perching them on his nose, just in case he could still see.
Alice Dreger is a professor of clinical medical humanities and bioethics at Northwestern University’s Feinberg School of Medicine. This essay originally appeared in the November–December issue of the Hastings Center Report.