Allen Shawn in the NYT Magazine
He begins, "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 . . . "
Here, he reveals his own attitude towards his sister. He assumes she suffers. Wait, no, scratch that, he used to assume she suffered. But then the passive construction of the second sentence - his assumption has come to look suspect - inserts a bit of distance and suggests that it really just looks suspect to other people. What about to him? Maybe he's not entirely on board with accepting her, as is, as other people "these days" might. So things are kind of up in the air. He's self-conscious about his more conventional judgments and values, he's revising them, but they are very present. Good set up.
And then he tells a story: about how the family hosts annual birthday parties for Mary, and they invariably serve the same thing, a menu that Mary gets excited about and talks about and anticipates and so on . . . same thing, every year for 50 years.
Well, finally, one year, Mom is aging and the kids (and assorted "friends") have to throw the party, but things spin out of control a bit and someone makes a platter of antipasti and someone makes a salad and some fruit and Mary enjoys it and Allen realizes "how vast and mysterious we all are." Even Mary.
On the one hand, the story is great. Shawn is confronting the limitations of how he and the family have related to his sister in the past.
On the other hand, the story is old hat. "We" watch a disabled woman become human. While she eats. Shawn mentions "our mother" and "our friends" and the we of the our is always he and his brother.
The photo is infantilizing and reeks of the dining room scene in The Miracle Worker. The author's prose is better; he describes Mary's "comfortable, confident . . . ease" at the party.
Also annoying is the mysterious role of "an extraordinary woman named Marjorie" who lives with his mother when she is, you know "unable to take care of herself in any way" and helps throw the most recent party. Allen Shawn does not tell us if her extraordinariness is paid, professional labor. I suspect it is and I think that that should be recognized.
But all in all, I'm glad he wrote it and I'm glad I read it.