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How the Disability Rights Revolution Saved My Sanity

by Ben Mattlin

Pub Date: Aug. 1st, 2012
ISBN: 978-1-61608-731-9
Publisher: Skyhorse Publishing

Born with a severe neuromuscular condition, writer and NPR commentator Mattlin pens the story of his life so far.

In 1962, Mattlin was six months old and still unable to sit up on his own. After years of visits to different medical specialists, he received a diagnosis of spinal muscular atrophy, an inherited disease that causes progressive, degenerative muscle weakness. While most people with this illness are unlikely to live to adulthood, Mattlin’s story is filled with details of how he managed to beat the odds again and again. He not only survived childhood, but be became one of the first wheelchair-bound students to graduate from Harvard. He eventually married and had two children. Although he strives to make this memoir as free from self-pity as possible, what comes across is a portrait of a rather unpleasant man. While the author touches on the history of the disability movement throughout the book, the story gets bogged down by a litany of Mattlin’s grudges, from the Harvard dorm room he was promised but didn’t get, to his disagreements with his father over his financial support. He describes how nearly every personal attendant he’s had has failed him—they are variously described as drunk, stupid, untrustworthy, crazy or some combination thereof. Mattlin also describes his sexual proclivities at uncomfortable length—e.g., how he manages to masturbate despite his muscular degeneration and his adolescent attempts at autofellatio, “a dirty little secret of the extremely scoliotic.” It isn’t until the final pages of the book—during which Mattlin discusses his hiring of an attendant who punctured his “self-righteous emotional shield”—that the author begins to open up in a genuine way. Unfortunately, it may be too late for most readers.

Mattlin’s life is inspiring, but his attempt at an unsentimental memoir falls short of the mark.