Harriet McBryde Johnson, RIP

Christine Rosen reflects on the passing of Harriet McBryde Johnson:

When Harriet McBryde Johnson died earlier this month at the age of 50 from a congenital neuromuscular disease, obituaries called her a “disability-rights activist.” This is far too narrow a description of her life. She was less a traditional activist than an acute social conscience. Ms. Johnson forced us to look at disability in a different way — not as something that we should seek to eradicate, but as something that is integral to the human condition, a “natural part of the human experience,” as the American Association of People With Disabilities puts it.

Ms. Johnson, a lawyer, first earned national attention when she debated philosopher Peter Singer at Princeton University in 2003, an experience she wrote about for the New York Times Magazine. Thankfully free of the ponderous cant that infects so much of bioethics, she was brutally direct when she talked about disabilities, including her own. “Most people don’t know how to look at me,” she wrote, describing her severely twisted spine and her “jumble of bones in a floppy bag of skin.” But she abhorred the “veneer of beneficence” that overlay the arguments of those who said she would be “better off” without her disability. “The presence or absence of a disability doesn’t predict quality of life,” she argued, challenging Mr. Singer’s support of what she called “disability-based infanticide.”

A bit more:

Although they never formed formal alliances (and Not Dead Yet takes no position on prebirth issues, such as genetic selection), Ms. Johnson and her fellow activists often found themselves on the same side of the ramparts as conservative Christians: Not Dead Yet marshaled the support of 25 national disability groups to oppose the attempts of Terry Schiavo’s husband to “starve and dehydrate her to death,” for example, and defended congressional efforts to intervene in the case. As Diane Coleman, president of Not Dead Yet, told a group in Tampa, Fla., during the Schiavo controversy: “Surely, it will not be argued that the National Spinal Cord Injury Association, the National Down Syndrome Congress, the Disability Rights Education and Defense Fund and all the rest are now or ever have been puppets of religious conservatives.” Indeed, Ms. Johnson, an atheist, once chastised Mr. Singer for describing his enemies as a monolith of religious faithful focused solely on “the sanctity of human life.”

What Ms. Johnson’s life and the organizations she worked with demonstrate is that the convenient categories we often invoke to discuss these issues — secular or religious, liberal or conservative — can obscure as much as clarify, and that the culture benefits from hearing arguments from advocates of both secular and faith-based perspectives. Ms. Johnson’s description of Mr. Singer’s philosophy — “it is all about allowing as many individuals as possible to fulfill as many of their preferences as possible” — could be the slogan of our impatient, technologically sophisticated age. And both conservative Christians and secular disability-rights activists have capably criticized this devotion to extreme individualism.

In many ways, the truths that Ms. Johnson forced us to confront are easier to dismiss when they come from so-called right-wing religious nuts. Ms. Johnson, with her experience of disability and her commitment to liberal principles, made people far more uncomfortable. Her critique challenged our cultural assumptions about disability. How accepting are we, really, of those who are not able-bodied? “The peculiar drama of my life has placed me in a world that by and large thinks it would be better if people like me did not exist,” she wrote. “My fight has been for accommodation, the world to me and me to the world.” Yet, despite the lip service we pay to “accommodation” (and the genuine good that comes from legislation such as the Americans With Disabilities Act), we now find ourselves in a disturbing situation: As our scientific powers to eliminate disability grow, our acceptance of disability wanes.

The entire piece is worth reading.

Here is a link to the New York Times Magazine piece she wrote. The opening:

He insists he doesn’t want to kill me. He simply thinks it would have been better, all things considered, to have given my parents the option of killing the baby I once was, and to let other parents kill similar babies as they come along and thereby avoid the suffering that comes with lives like mine and satisfy the reasonable preferences of parents for a different kind of child. It has nothing to do with me. I should not feel threatened.

Whenever I try to wrap my head around his tight string of syllogisms, my brain gets so fried it’s . . . almost fun. Mercy! It’s like ”Alice in Wonderland.”

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.

At this stage of my life, he says, I am a person. However, as an infant, I wasn’t. I, like all humans, was born without self-awareness. And eventually, assuming my brain finally gets so fried that I fall into that wonderland where self and other and present and past and future blur into one boundless, formless all or nothing, then I’ll lose my personhood and therefore my right to life. Then, he says, my family and doctors might put me out of my misery, or out of my bliss or oblivion, and no one count it murder.