Allen Shawn’s twin sister Mary has lived in an institution since she was 9, and for more than half a century visited her family each year for a ritual birthday lunch with an unchanging menu. (Shawn’s mother had feared that a change in the the menu or location of the lunch would upset Mary.)

Writing in the New York Times magazine, Shawn describes the last of the birthday lunches, shortly before his mother’s death. Mary adapts cheerfully to changes in the menu and location of the meal, causing Shawn to reexamine what he thought he knew about his sister and the meaning of her life.

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 his her, and harder to comprehend, because her limited verbal communication is at the heart of what ails her.

… From the moment our mother was brought into the room, her eyes remained open in unmistakable wonder and joy, as she looked from one of us to the other in astonishment and gratitude, galvanized, awakened, transfixed, radiantly fulfilled by the sight of her daughter.

… It is amazing how much people contain that we never have a chance to know about, how vast and mysterious we all are.

(New York Times photo)

This entry was posted on Monday, June 23rd, 2008 at 3:05 pm and is filed under NOT2BEMISSED, autism, commentary, families, first-person, personal stories. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.  Email This Post