LIFE EXPECTANCY

Sophronia Gayle-St. John, plagued by unexplained mood swings, memory lapses, and clumsiness, struggles through high school as best she can.

Sophie’s class for students with disabilities will be performing the play Abomination, the story of a magical, disfigured child who’s shunned by society, that’s based on an award-winning novel by Mariam Gayle, her literary titan of a grandmother. This prompts Sophie to dig into her family’s past—and she discovers shocking revelations, among them the fact that her parents won damages in a lawsuit over her “wrongful birth.” For 16 years, they’ve carefully hidden her diagnosis of juvenile Huntington’s disease, and Sophie learns she may only have a short time left to live. Now she must decide what to do with this truth. Hughes grapples with enormous questions about bodily autonomy, genetic testing, legal morality, and coping with terminal illness—and only sometimes succeeds. Sophie’s classmates, thrown together despite vastly different access and academic needs, are a collection of broadly drawn disability stereotypes; Sophie herself, while easy to root for in her anger and intense willfulness, is on a trajectory that feels intended more to teach through inspirational clichés than to paint a truly complicated vision of disabled reality. More successful are the explorations of interpersonal conflicts, her high-powered professional parents’ neglect, Mariam’s legacy of abuse, and Sophie’s profound isolation. Sophie’s family is cued white.

A didactic web of family dramas and lessons for living that falls short in nuanced representation.