Perspectives on Disability, Ethics, and Self-Determination: Harriet McBryde Johnson (1957-2008)

harriet

Why are some lives valued (and protected) more than others? How is value and worth accorded based on normative, hierarchical understandings of ability?

In 2002, disability rights activist and attorney Harriet McBryde Johnson accepted an invitation to debate Princeton professor and moral philosopher Peter Singer at Princeton University. Singer, best known for his writings on animal rights/liberation theory, was (and remains) notorious amongst disability activists for his belief that parents should ethically be able to euthanize their disabled children during infancy so that they can be replaced by nondisabled babies who have a “greater chance at happiness.” Johnson, who used a motorized wheelchair due to neuromuscular disease, was a longtime advocate for disability rights, working alongside organizations such as Not Dead Yet.

In 2003, Johnson published an incredible, long-form account of her conversations with Singer in The New York Times Magazine. The account presents two fundamentally opposed worldviews: Singer’s “logics” of preference, quality of life, and devaluation of the life worth of people with disabilities (perhaps not dissimilar from eugenicists’ calls for “efficiency” and the “social good”), and Johnson’s call for self-determination and support for the potentially rich and fruitful lives of people with disabilities.

Read the full essay here. Selected excerpts are included below.

 

“It is a chilly Monday in late March, just less than a year ago. I am at Princeton University. My host is Prof. Peter Singer, often called — and not just by his book publicist — the most influential philosopher of our time. He is the man who wants me dead. No, that’s not at all fair. He wants to legalize the killing of certain babies who might come to be like me if allowed to live. He also says he believes that it should be lawful under some circumstances to kill, at any age, individuals with cognitive impairments so severe that he doesn’t consider them ”persons.” What does it take to be a person? Awareness of your own existence in time. The capacity to harbor preferences as to the future, including the preference for continuing to live.”

– – –

 “It is an interesting exchange. In the lecture hall that afternoon, Singer lays it all out. The ”illogic” of allowing abortion but not infanticide, of allowing withdrawal of life support but not active killing. Applying the basic assumptions of preference utilitarianism, he spins out his bone-chilling argument for letting parents kill disabled babies and replace them with nondisabled babies who have a greater chance at happiness. It is all about allowing as many individuals as possible to fulfill as many of their preferences as possible.”

– – –

“In the discussion that follows, I argue that choice is illusory in a context of pervasive inequality. Choices are structured by oppression. We shouldn’t offer assistance with suicide until we all have the assistance we need to get out of bed in the morning and live a good life. Common causes of suicidality — dependence, institutional confinement, being a burden — are entirely curable. Singer, seated on my right, participates in the discussion but doesn’t dominate it. During the meal, I occasionally ask him to put things within my reach, and he competently complies.”

 

 

 

Why We Should Teach the History of Eugenics

University College of London is grappling with the legacy of UCL professor Francis Galton, best remembered as the founder of eugenics. Across the pond, Haunted Files at NYU’s Asian/Pacific/American Institute is confronting New York’s historical role as an epicenter of international eugenics in the 1910s-1930s. In light of these projects, the Center for Genetics and Society reflects on the importance of teaching eugenics history, especially within the context of higher education:

“Many educational institutions still avoid discussing the history of eugenics, and many are reluctant to confront their own complicity in the abuses it facilitated. But studying eugenics in the twentieth century is important not just as a matter of learning history, but as part of what we need to know in order to thoughtfully consider the responsible uses of genetic technologies today.”

Read it in full here.