Members of any disability community often have to wait around for some sort of entrance into the the social discourse: a film that ruffles feathers, a vice presidential candidate with a son with Down Syndrome. Often those entrances end up being squandered chances. One of the more common responses to the criticism of "Tropic Thunder" I saw was "I do what I want, an' I have Free Speech, so you shut up." Which is, you know, maybe not the most supple view of one of our most cherished rights as Americans. Free Speech maybe doesn't mean "you shut up."
Ironically, (delicious, delicious irony), not having any kind of voice was the center of the disability community's criticism of "Tropic Thunder." The movie is a satire, and spends a good deal of time making fun of Hollywood and the way it portrays The Other: African Americans, the disabled, whatnot. So far so good; good satire generally doesn't bate its blades. While the filmmakers obviously spend a good deal of time talking with African American organizations about its use of blackface, the n-word, and a bunch of other deliberately inflammatory stuff, no one bothered to contact anyone in the disability community. A Black character is in the film deliberately speaking to how his race is portrayed. No similar character exists for the disability community, because we all know that the disabled, especially those with mental impairments, have no opinions. Once again, the disabled are used as a prop in a satire in which the writers satire writers for using the disabled as a prop. It almost hurts to think about.
This book is a wonderful rebuttal of "you shut up." The collected stories are written by people who, for the most part, aren't professional writers, telling the day to day stories of having children with Down Syndrome. Because the writers are not professional, some stories are better written than others; a few are actually painfully bad. (Full disclosure: I have a good friend who contributed her story of having Emma, and her initial grief of the loss of certain possibilities for her daughter. No one tells a Down Syndrome child they can be president.)
Communities based on socially damaged identities often enter the public discourse as a monolith. I've done it here is this review. "The disability community thinks this, they do that.." This is, of course, horsefeathers. This book is filled with dozens of voices telling their varied stories. The stories and children are unique. Some speak to fears and loss, some are about the day to day, some about family and friends. All are predicated on the writer's fierce love for her child. You shut up, indeed.