I LIVE A LIFE LIKE YOURS

A sensitive examination of the meaning of disability.

When he was 3 years old, award-winning Norwegian writer Grue was diagnosed with spinal muscular atrophy, a degenerative disease that compromised his ability to walk and, doctors predicted, would worsen over time. In a frank and often moving memoir, the author reflects on disability, identity, and difference, drawing on philosophy, sociology, literature, and art: Erving Goffman on the concept of stigma, for example; Joan Didion on grief; Michel Foucault on the clinical gaze. Now a professor, writer, former Fulbright scholar, husband, and father, Grue celebrates considerable accomplishments. “I am writing about all that I wanted to have,” he notes, “and how I got it.” His parents, both academics, were determined to help him flourish. Their negotiations with the Norwegian Social Services system, however, could be frustrating: “My parents request something, their request is denied, they appeal the denial, they win. This process takes them several months, or years.” Nevertheless, the system provided him with benefits such as physical therapy and medical treatments as well as a powered wheelchair that afforded him access to the world, enabling travel to Russia, Amsterdam, Denmark, and the University of California, Berkeley, for his Fulbright. “I am privileged and vulnerable,” he admits: privileged because Norway supports its citizens’ well-being; vulnerable to people’s attitudes about disability as well as to physical obstacles. Grue recalls his loneliness at feeling like “a body that no one, least of all one’s self, wishes to know.” Who would he have been, he has wondered, if he didn’t have a muscular disease? Refreshingly, the author reflects less on his “unlived life” than on the life he lives: The physical deterioration that he anticipated never happened; he found love and companionship; and, he reflects, “at some point or another I stopped thinking about myself as someone who needed repairing.”

Absorbing, insightful reflections on being human.