“I am in the first generation to survive to such decrepitude. Because antibiotics were available, we didn’t die from the childhood pneumonias that often come with weakened respiratory systems. I guess it is natural enough that most people don’t know what to make of us.”
Born in Laurinburg, North Carolina on July 8, 1957, Harriet McBryde Johnson was one of five children born to parents who were college lecturers. A sister died of the same progressive neuromuscular condition that she herself experienced. Thanks initially to the family’s economic security and later to her own professional career, she benefitted from the personal assistance and the power chair that enabled her to participate in American society. She always knew that she was one of the privileged ones, who could escape what she called the “Disability Gulag”.
From an early age, Johnson realized that she would have a limited life expectancy. She was an activist by the time she was a teenager at special school, trying to get an abusive teacher fired. Like thousands of other disabled people, she thought that television charity telethons – such as the annual Jerry Lewis event on American TV – were demeaning and counter-productive. Later she would describe herself as holding the world endurance record for protesting the Jerry Lewis telethon. In return, Lewis described activists such as Johnson as the equivalent of Lebanon’s Hezbollah.
Harriet McBryde Johnson earned undergraduate and postgraduate degrees in history and public administration in Charleston. After graduating from the University of South Carolina Law School in 1985, she set up in private practice as a lawyer, where she specialized in welfare and civil rights claims for poor people with disabilities. She was also active in the Charleston Democratic Party, first as secretary and then as chair.
Johnson’s intelligence and confidence made her an ideal advocate for disabled people, not just in the courtroom but also in the political arena and through the pages of America’s newspapers. She also had a wry sense of humour, as another extract from her writing demonstrates:
“It’s not that I’m ugly. It’s more that most people don’t know how to look at me. The sight of me is routinely discombobulating. The power wheelchair is enough to inspire gawking, but that’s the least of it. Much more impressive is the impact on my body of more than four decades of a muscle-wasting disease. At this stage of my life, I’m Karen Carpenter thin, flesh mostly vanished, a jumble of bones in a floppy bag of skin.”
Beginning in April 2001, her most famous intervention was a series of encounters with the Princeton philosopher Peter Singer. A utilitarian, Singer has notoriously challenged the value of life, and suggested that it should be permissible for severely impaired newborns to be killed. In 2002, she debated publicly with Singer, and subsequently published “Unspeakable conversations”, an article in the New York Times, the source of the self-description above. Johnson pointed out that: “The presence or absence of a disability doesn’t predict quality of life.” Drawing on her own experience as someone with a neuromuscular impairment, she argued:
“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.”
Singer’s theories may lead him to obnoxious conclusions on the topic of disability, but he is no bigot: on other issues he is very progressive. He is also of course formidably intelligent. On the one occasion that I debated with him on radio, I found him a rather cold and intimidating opponent. By matching him in person and in print, Johnson made a huge impact on all those who heard or read her, enabling millions to access and understand the arguments that the disability rights organization Not Dead Yet was propounding. In particular, as an atheist Democrat, she helped non-disabled people understand that arguments against assisted suicide and selective abortion came not only from Christian conservatives, but also from the disability rights community.
Johnson published two books. The first, a memoir called Too Late to Die Young, was published in 2005 and contains eloquent descriptions of living with personal assistance, of fighting prejudice and of the value of life as a disabled person, what she called “bearing witness to our pleasures”. In the preface, she wrote:
“For any Charleston lawyer, any Southern lawyer for that matter, storytelling skill comes so close to being a job requirement that maybe it should be tested in the bar exam. Beyond that, for me, storytelling is a survival tool, a means of getting people to do what I want.”
A novel, Accidents of Nature, about a girl with cerebral palsy who had never known another disabled person until she went to camp, was published in 2006.
When Harriet McBryde Johnson died two years later, aged only 50, the fact that she had obituaries in both the New York Times and the Wall Street Journal demonstrates the impact her life and writing had had on American culture and politics.