Disabled Lives: Who Cares?

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 unable to learn them. Affectionate at home, he becomes terrified if a stranger touches him. Unusually large for his age, he is also very clumsy, unable to play games at which most younger children are adept. He also has distracting bodily tics and makes weird noises.

Arthur has both Asperger’s Syndrome, a type of autism, and Tourette’s Syndrome. His parents have full-time jobs, and they cannot afford much help. Fortunately his mother’s job as a church organist allows her to practice at home, and church people don’t mind if she brings Arthur to work. More important still, the state in which they live has agreed, after a struggle, to pay for Arthur’s education at a private school equipped to handle his combination of gifts and disabilities. None of us knows whether Arthur will ever be able to live on his own.

Jamie Bérubé loves B.B. King, Bob Marley, and the Beatles. He can imitate a waiter bringing all his favorite foods, and he has a sly sense of verbal humor. Born with Down Syndrome, Jamie has been cared for, since his birth, by a wide range …

This article is available to Online Edition and Print Premium subscribers only.
Please choose from one of the options below to access this article:
If you already have one of these subscriptions, please be sure you are logged in to your nybooks.com account. If you subscribe to the print edition, you may also need to link your web site account to your print subscription. Click here to link your account services.