Disabled Lives: Who Cares?
EVA FEDER KITTAY (1999), Love’s Labor: Essays on Women, Equality, and Dependency; MICHAEL BÉRUBÉ (1998), Life As We Know It: A Father, a Family, and an Exceptional Child; JOAN WILLIAMS (2000), Unbending Gender: Why Family and Work Conflict and What to Do About It
Sesha, daughter of the philosopher Eva Kittay and her husband Jeffrey, is a young woman in her early thirties. Attractive and affectionate, she loves music and pretty clothes, and responds with joy to the affection and admiration of others. Sesha sways to music and hugs her parents. But she will never walk, talk, or read. Because of congenital cerebral palsy and severe mental retardation, she will always be profoundly dependent on others. She needs to be washed, fed, dressed, wheeled out into Central Park. Beyond such minimal custodial care, if she is to flourish in her own way she needs companionship and love, a visible response to the capacities for affection and delight that are her strongest ways of connecting with others. Her parents, busy professionals, both care for Sesha for long hours themselves and pay a full-time caregiver. Still other helpers are needed on the many occasions when Sesha is ill or has seizures, and cannot help by telling where she hurts. In Love’s Labor, Kittay argues that Sesha’s need for care suggests both major criticisms of our dominant theories of social justice and major changes that should be made in our political arrangements.
My nephew Arthur is a big, good-looking ten-year-old. He loves machines of all sorts, and by now he has impressive knowledge of their workings. I could talk with Arthur all day about the theory of relativity, if I understood it as well as he does. On the phone with Arthur, it’s always “Hi, Aunt Martha,” and then he goes right into the latest mechanical or scientific issue that fascinates him. But until recently Arthur has been unable to learn in a classroom with other children, and he cannot be left alone for a minute when he and his mother are out shopping. He has few social skills and he seems