A Life Worth Living

Harriet McBryde Johnson 1957-2008

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."

Ms. Johnson was part of a disability rights movement that had changed dramatically since the first Jerry Lewis Labor Day telethons in the 1960s, with their offensive references to "cripples" and their maudlin descriptions of "killer diseases." She worked with people like Mike Ervin, a former Muscular Dystrophy Association poster child who founded a group, "Jerry's Orphans," to protest the telethons; Ms. Johnson herself demonstrated every Labor Day on the streets of her hometown of Charleston, S.C. She also worked with Not Dead Yet, the disability-rights group formed in 1996 to challenge the assisted suicide movement.

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.

To cite just one example, consider the rapid near-disappearance of people with Down Syndrome. Between 80% and 90% of women who find out they are carrying a child with the chromosomal abnormality (which can be tested using amniocentesis) choose to abort. A Harvard medical student who surveyed 1,000 women who were pregnant with Down Syndrome babies reported that many were urged by their doctors to terminate their pregnancies; one woman's physician told her that her child would "never be able to read, write or count change." This at a time when new developments in medicine have nearly doubled the average life span of people who have the condition to 49 from 25 years. As a culture, we have made what Amy Laura Hall of Duke University Divinity School calls a "democratic calculus of worth" regarding Down Syndrome. And that calculus has resulted in a society hostile to people who refuse to make the culturally acceptable choice of ridding themselves of a disabled child before she is born.

One recent effort to change this culture has come from Congress: Sponsored by the unlikely alliance of Sens. Sam Brownback (R., Kan.) and Edward Kennedy (D., Mass.), the Prenatally and Postnatally Diagnosed Conditions Awareness Act calls for the creation of a telephone hotline and peer-support programs for parents, a national registry for families willing to adopt children with Down Syndrome, as well as "up-to-date, evidence-based, written information concerning the range of outcomes for individuals living with the diagnosed condition, including physical, developmental, educational, and psychosocial outcomes."

As Ms. Johnson wrote of herself and others with disabilities: "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." And as Laura Hershey, her friend and fellow activist, told me, Ms. Johnson "invited people to understand the value and pleasure of living a life with disability."

But if choice and prevention produce a culture that equates disability with irresponsible parenting decisions, then the homage we pay to accommodation will prove hollow indeed. And as the population ages, and more Americans find themselves living with disabilities, questions about worth at the end of life will become even more pressing. Thanks to people such as Harriet Johnson, we have not yet reached the point where accommodation has given way to neglect or elimination. But we would do well to respect what Ms. Johnson's own life so ably demonstrated: People with disabilities, she said, "have something the world needs."