With a voice as disarmingly bold, funny, and unsentimental as its author, a thoroughly unconventional memoir that shatters the myth of the tragic disabled life
Harriet McBryde Johnson isn't sure, but she thinks one of her earliest memories was learning that she will die. The message came from a maudlin TV commercial for the Muscular Dystrophy Association that featured a boy who looked a lot like her. Then as now, Johnson tended to draw her own conclusions. In secret, she carried the knowledge of her mortality with her and tried to sort out what it meant. By the time she realized she wasn't a dying child, she was living a grown-up life, intensely engaged with people, politics, work, struggle, and community.
Due to a congenital neuromuscular disease, Johnson has never been able to walk, dress, or bathe without assistance. With help, however, she manages to take on the world. From the streets of Havana, where she covers an international disability rights conference, to the floor of the Democratic National Convention in Chicago, to an auditorium at Princeton, where she defends her right to live against philosopher Peter Singer, she lives a life on her own terms. And along the way, she defies and debunks every popular assumption about disability.
This unconventional memoir opens with a lyrical meditation on death and ends with a surprising sermon on pleasure. In between, we get the tales Johnson most enjoys telling from her own life. This is not a book "about disability" but it will surprise anyone who has ever imagined that life with a severe disability is inherently worse than another kind of life.
As a seven-year-old diagnosed with a neuromuscular disease that required her to use a wheelchair, recalls Johnson, she found Jerry Lewis's Muscular Dystrophy Association (MDA) telethon imbued with such a sense of pity and doom that she felt she must die young. Now a feisty middle-aged attorney and disabilities rights activist still using a wheelchair, she realizes that it is "too late to die young" and continues the advocacy that early exposure to the "pity approach" inspired. Her honest and engrossing memoir is full of lively vignettes that reflect her experiences as she takes on the nondisabled world with bravado, stubbornness, and a bit of Southern charm. From her first demonstration against the MDA telethon to her celebrated debate with Peter Singer of Harvard, who has stated that killing a disabled infant is not morally equivalent to killing a person, this lady pulls no punches. An entertaining look at an activist who insists on living life her way, disability or no; strongly recommended for most collections. [See Prepub Alert, LJ 12/04.]-Ann Forister, Roseville, CA Copyright 2005 Reed Business Information.