Alison Reiheld evokes a famous exchange between Harriet McBryde Johnson and Peter Singer to illustrate a new study that provides further evidence that clinicians’ stigma against people with disabilities affects their care.
In 2003, Harriet McBryde Johnson famously engaged Peter Singer to discuss his views on disabled persons. Like so many before him – utilitarians or not – Singer argued that the lives of disabled persons involved more suffering and less joy than non-disabled persons, and he focused on the costs of their care rather than the joys of their own lives and the joy they bring others. As Johnson put it in her piece “Unspeakable Conversations” in the New York Times, “To Singer, it’s pretty simple: disability makes a person ‘worse off.’”
This view is not uncommon amongst clinicians and bioethicists who play a role in making quality of life determinations for disabled patients, and who use those in making determinations about access to care and especially when care is “futile.” A new study in Health Affairs confirms precisely this. The authors, Iezzoni et al., begin by noting that more than 61 million Americans have disabilities (about 1/5 of the population), and that they experience health care disparities. One possible cause might be physicians’ perceptions of people with disability, and so Iezzoni et al. set out to measure these perceptions. In a survey of 714 currently practicing U.S. physicians, 82% reported that “people with significant disability have worse quality of life than nondisabled people.” A majority of clinicians surveyed realized at some level that they were not well-prepared to provide the same quality of care to disabled patients as to non-disabled patients: only 40.7% of them felt “very confident” about their ability to do so, while 57% “strongly agreed” they welcome such patients into their practices. About 1 in 5 of those surveyed acknowledged that the health care system often treats these patients unfairly.
Quality of life judgments made by physicians are no less suspect than those made by Singer, if we extend Johnson’s analysis. She responds to these judgments in “Unspeakable Conversations”:
Are we “worse off”? I don’t think so. Not in any meaningful sense. There are too many variables. For those of us with congenital conditions, disability shapes all we are. Those disabled later in life adapt. We take constraints that no one would choose and build rich and satisfying lives within them. We enjoy pleasures other people enjoy, and pleasures peculiarly our own. We have something the world needs.
Pressing me to admit a negative correlation between disability and happiness, Singer presents a situation: imagine a disabled child on the beach, watching the other children play…
I respond: “As a little girl playing on the beach, I was already aware that some people felt sorry for me, that I wasn’t frolicking with the same level of frenzy as other children. This annoyed me, and still does.” I take the time to write a detailed description of how I, in fact, had fun playing on the beach, without the need of standing, walking or running….
[I] invoke the muck and mess and undeniable reality of disabled lives well lived.