Sunday, June 22, 2008

Writer recalls annual meals with his disabled sister

When Allen Shawn's memoir about his own struggles with phobias, Wish I Could Be There, came out in 2007, I remember reading interviews with him discussing his parents' decision to put his twin, Mary, into an institution for people with intellectual disabilities. I thought he made a powerful statement about how devastating it was to have his sister taken away from him. In my opinion, whole families were destroyed by the inappropriate institutionalization of many people with disabilities.

In the June 22 NY Times he writes in its Food: Eat, Memory column about the family's annual birthday dinner for Mary, when she arrived at their summer home to eat her favorite things. He also rethinks some of his understanding of her disabilities.

He writes:

For my sister, Mary, who has lived in a Maryland institution for the mentally retarded since she was 8, there’s no hiding the fact that food is central. When she is eating, food appears to be the focus of her attention. She doesn’t like to be distracted from it by conversations, let alone by dramatic events. In anticipating the birthday lunches my parents planned for her on her yearly two-hour visits to their summer rental in Bronxville, N.Y., to which she was accompanied by an attendant, she would always reel off the menu she was expecting. This meal never varied throughout her teens and remained unchanged as she passed through her 20s, 30s, 40s and 50s: chicken salad, tomatoes, rolls with butter, iced tea, ice cream and cake. Each summer, she would mention the food within moments of arriving. Mary has a way of speaking that can almost be like singing or intoning, with each syllable given enormous weight. This menu always sounded particularly emphatic. During the chicken-salad course, she would mention a few times that ice cream and cake were coming.

Mary is 59. So am I. We are twins. These days, children with the degree of autism, mental retardation and elements of schizophrenia from which she suffers are more likely to live in a group home than to be institutionalized. Indeed, even the notion of 'suffering' that I just suggested has come to look a bit suspect, since it implies that it is 'best' for a person not to have certain 'deficits.' And I am no longer certain that she suffers more than others, only that her distress can be more immediately obvious when it hits her, and harder to comprehend, because limited verbal communication is at the heart of what ails her.