TOO LATE TO DIE YOUNG
Nearly True Tales from a Life
By Harriet McBryde Johnson
Henry Holt. 261 pp. $23
A person who experiences a terrible personal tragedy and chooses to write about it faces a daunting challenge. Though every detail of the sad and difficult journey is searingly meaningful to the afflicted writer, will anyone else care? Or will the distant reader think the misfortune is merely repellent and shrink away, relieved that so awful a fate did not afflict him?
In Too Late to Die Young , Harriet McBryde Johnson has overcome this problem with her essential wit, humanity and pluck. This is a transporting tale about a determined and attractive woman with congenital neuromuscular disease, who has never walked, who expected to die young and yet who has gone on to a distinguished career in the law, an often fun-filled life as a brassy activist for the handicapped and a rich existence with friends and colleagues in the mossy insouciance of Charleston, S.C.
This is a book full of surprises. Johnson puts us on notice at the outset that she has a wry eye for the "natural" world. She rejects the "formulaic narratives" that we have constructed featuring handicapped people as "stock figures" to be pitied and at the same time praised for their courage and inspiration to others. Though her spine may be horribly twisted, though a simple tumble from a wheelchair may turn into a life crisis, she argues for her humanity in the fullest and most equal sense. She is prickly and feisty. She is not to be trifled with.
And yet there is great value in knowing what the life of a fragile figure, imprisoned in a wheelchair and unable to swallow solid food, is like in modern America, especially the America that has been considerably improved by the Americans With Disabilities Act of 1990. The logistics are formidable: the need for caregivers, the navigation of streets and buildings, the simple acts of getting into bed or going to the bathroom, the desperate risks that may lurk around any corner. Life for the handicapped is pretty elemental.
Johnson escorts us into what she calls "cripworld" or "cripdom" with bubbly good cheer, almost daring us to feel sorry for her. No authority, no impediment seems to stymie her. As an undergraduate at the University of South Carolina, she took on the Secret Service and Ronald Reagan when the police invaded her private space and tried to shut down her protest of the president's visit to her campus. Eight years later when she was assistant city attorney in Charleston, she became a leading figure in a protest against Jerry Lewis and his pity-inspiring commercial telethons.
"We don't want pity," she quotes a fellow protester against the Lewis bathos as saying, "Pity gets in our way when we are looking for jobs and a place in the community."
She fought for her dignity and her space as a delegate to the 1996 Democratic National Convention when she was alternately trampled and then shut in by a cordon of buttocks. "Keep your butt out of my face," she demanded. She deplored the way that Christopher Reeve was used at the convention. "There he is, Charlie McCarthy," she writes. And in 2002 at Princeton, in a quite fascinating debate, she confronted animal-rights philosopher Peter Singer and his genocidal argument that society would be better off if disabled people like her did not exist. The essence of the interchange was the question of whether the life of a disabled person is inherently less happy and valuable. She won.