AN ORDINARY FUTURE

A family embraces difference.

Pearson, a professor of anthropology and social science, melds memoir and social, cultural, and medical history in a moving meditation on difference, disability, and humanity. In 2015, when his newborn daughter, Michaela, was diagnosed with Down syndrome, he and his wife were shocked. Soon, though, he asked himself whether that initial response was generated by ideas about normalcy deeply embedded in the culture. First identified by physician John Langdon Down in the 1860s, Down syndrome fed into assumptions about social hierarchy, evolution, and degeneration. Some researchers believed that Down syndrome individuals, because of their distinctive facial features, represented regression to a more primitive evolutionary stage. The eugenics movement and early intelligence testing intensified these beliefs, justifying the idea that children with Down syndrome were incapable of becoming productive members of society. In 1944, when psychologist Erik Erikson’s son Neil was born with Down syndrome, his eminent friend Margaret Mead advised him to send the baby to an institution immediately, never letting his wife see her son, thereby sparing the family emotional turmoil. The decision, Pearson discovered, tore the family apart; Neil died in an institution in 1965. During his short life, Mead herself evolved her views on human difference, speaking out about how much people with disabilities enrich “our understanding of humanity and the world.” By the time Michaela was born, abundant medical and educational resources were available for her, beginning at birth. However, Pearson also reports his frustration with a school system that evaluates her according to the ableist norms of standardized tests and, most crucially, didn’t take into account her health needs during the pandemic. When controversy over vaccines and masking roiled his Wisconsin community, Pearson sued the school board to institute masking. He and his wife, he writes, are committed to “an ongoing project to build a world where it is not only safe to be different, but where the most vulnerable are safe from structural violence.”

Sensitive reflections on human value.