I met Harriet McBryde Johnson in the spring of 2001, when I was giving a lecture at the College of Charleston. Her brand of Southern etiquette prescribed that if you’re not prepared to shoot on sight, you have to be prepared to shake hands, so when I held out mine, she reached up from her powered wheelchair and took it with the three working fingers on her right hand. She added that she was attending my lecture as a supporter of Not Dead Yet, the disability rights organization that a year and a half earlier blockaded Princeton University’s Nassau Hall in protest against my appointment as a professor of bioethics. I told her I looked forward to an interesting exchange.
My lecture, “Rethinking Life and Death,” was a defense of the position that had aroused such vehement opposition. I pointed out that physicians routinely withdraw life support from severely disabled newborns, and I argued that this is not very different from allowing parents to decide, in consultation with their doctors, to end the life of a baby when the child has disabilities so serious that the family believes this will be best for the child or for the family as a whole.When I finished, Johnson, who was born with a muscle-wasting disease, spoke up. I was saying, she pointed out, that her parents should have been permitted to kill her shortly after her birth. But she was now a lawyer, enjoying her life as much as anyone. It is a mistake, she said, to believe that having a disability makes life less worth living.
Our exchange of views continued for a few minutes in the lecture theater, and by e-mail afterward. Years later, when I read her autobiographical book, “Too Late to Die Young,” I wasn’t surprised to see “arguing hard” listed among the pleasures of her life.
The following year, I invited her to Princeton to speak to a large undergraduate class I was teaching. She accepted but on condition that in public we avoid the informality of using first names that I had, in my Australian way, adopted over e-mail. She was also unwilling to accept the inequality implied in “Professor Singer” and “Ms. Johnson.” I agreed that she could address me as Mr. Singer.
She described the visit to Princeton in “Unspeakable Conversations,” her memorable cover article for this magazine in 2003. She wrote beautifully, her powers of recollection were remarkable (she wasn’t taking notes at the time) and she was more generous to me than I had a right to expect from someone whose very existence I had questioned. She even wrote that she found me good company, as indeed I found her.
After she spoke, I arranged for her to have dinner with a group of undergraduates who met regularly to discuss ethical questions. I sat on her right, and she occasionally asked me to move things to where she could reach them. At one point her right elbow slipped out from under her, and as she was not able to move it back, she asked me to grasp her wrist and pull it forward. I did so, and she could then again reach her food with her fork. I thought nothing of the incident, but when she told some of her friends in the disability movement about it, they were appalled that she had called on me to help her. I’m pleased that she had no difficulty with it. It suggests that she saw me not simply as “the enemy” but as a person with whom it was possible to have some
forms of human interaction.
My students talked about Johnson’s visit for a long time, and our conversations stayed with me, too. Her life was evidently a good one, and not just for herself, because her legal work and political activism on behalf of the disabled was valuable to others as well. I know that surveys have found that people living with disabilities show a level of satisfaction with their lives that is not very different from that of people who are not disabled. Have people with long-term disabilities adjusted their expectations downward, so that they are satisfied with less? Or do even severe disabilities really make no difference to our happiness, once we get used to them?Over the next six years we e-mailed sporadically. If I wrote or spoke on disability issues, she would send me her criticisms, and that would lead to a flurry of e-mail messages that at least clarified the points on which we disagreed. I tried to persuade
Johnson that her attribution of rights to humans with severe intellectual disabilities had implications for how we should think about animals too, since they could enjoy their lives as much as, or more than, the people whose right to life she was defending. She didn’t object to the argument but felt she had enough issues to handle without getting into a new area altogether. We found it easier to agree on religion, for neither of us had any, and on our dislike for the direction the country was taking under the presidency of George W. Bush.
According to her sister, Beth, what most concerned Harriet about dying was “the crap people would say about her.” And sure enough, among the tributes to her were several comments about how she can now run and skip through the meadows of heaven. Doubly insulting, first because Johnson did not believe in a life after death, and second, why assume that heavenly bliss requires you to be able to run and skip?
