Melody Brooks, who narrates Out of My Mind, brought me right back to fourth grade reading class at Parkwood Upjohn Elementary School in Kalamazoo, Michigan, and my classmate Joy. In the novel, Melody says, “By the way, there is nothing cute about a pink wheelchair,” with the brand of wit that I remember from Joy. In addition to having started busing to racially integrate the Kalamazoo Public Schools the prior year (in 1971), Parkwood Upjohn served a physically challenged population. The school had a small swimming pool for physical therapy, and ramps for students who required wheelchairs.
Joy was funny and smart and often added a pithy remark or two at just the right time. Unlike Melody in Out of My Mind, Joy could speak easily, but her torso and limbs had ceased to grow, and she relied on a wheelchair to get her from place to place—though she could also use canes to advance her immobile legs. An aid helped Joy get from place to place, but other than that she seemed very self-sufficient to my nine-year-old mind. The teachers went a long way to create a space in which we all treated Joy as one of us.
Not until many years later when I read an article called “Unspeakable Conversations” by Harriet McBryde Johnson in the New York Times Magazine did I consider how much work must have gone into Joy’s daily routine. In her article, Johnson, a lawyer and disability rights activist and advocate born with a muscle-wasting disease, talks about a debate she had with Professor Peter Singer in her home state of South Carolina. She begins her article this way, “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.” But in the course of the article, she talks about how her debates with Singer (he later invites her to speak at Princeton University, where he teaches) cause her to reflect on the complexities of humanity and society. She’s candid about the fact that her willingness to look at Singer not as “a monster” but as a person, beyond the views he holds, allowed them both to achieve a level of honesty rarely achieved in public discourse. It made me think about the missed opportunities buried inside political correctness and the ways in which honest dialogue can at least open up our thinking if not change our minds. When Harriet McBryde Johnson died at the age of 50 in 2008, Peter Singer’s tribute showed that her views had also caused him to reflect on the complexities of humanity and society.
Johnson also wrote a moving novel for teens called Accidents of Nature. What comes through in both Johnson and Draper’s writing is how much people with physical challenges just want to be treated with respect like anyone else.