TOO LATE TO DIE YOUNG

Selected episodes from the life of “a tiny wheelchair woman with a certain amount of mouth,” as disability rights activist Johnson describes herself.

Johnson not only practices law in Charleston, S.C., specializing in disability issues, but she’s a force in the Democratic Party in Charleston and leads an annual protest against the Muscular Dystrophy Telethon, which, she argues, stereotypes people with disabilities as hopeless cases. The present memoir grew out of an article (“Unspeakable Conversations”) that ran in the New York Times Magazine in 2002 and is reprinted here. In it, Johnson describes her encounter with Princeton bioethicist Peter Singer, whose position that euthanasia should be legalized in the case of severely disabled newborns has aroused the ire of proponents of disability rights, among others. Johnson holds her own against Singer, as she does against the forceful photographer sent by the Times to take pictures of her for the article. Other chapters briskly and wittily recount her low-budget campaign for a seat representing Charleston on the county council in 1994 (she lost), her misadventures with the Secret Service as a delegate to the 1996 Democratic convention, her courtroom appearance as co-counsel for the plaintiff in a case under the Americans with Disabilities Act (she won), a visit to Cuba for a disability rights conference, which she covered for New Mobility magazine and a disastrous trip in 2001 to a disability convention in Tucson, where a fall from her wheelchair sent her to the emergency room and required an air-ambulance trip back home. The word “frail” scarcely describes Johnson’s physique, for she weighs only 70 pounds, has a spine so twisted by muscular dystrophy that it can’t support her and relies on others for the most basic aspects of daily care. But blunt, stubborn, proud, resourceful and smart are words that do describe her indeed.

A remarkable portrait of a woman who is proof that the disabled can live lives filled with purpose and pleasure.