Endgame

My recent viewing of LUCY – a play at CANSTAGE at the Berkeley Street Theatre in Toronto inspired some real feelings with regards to how our lives are viewed by others. LUCY is not alone at fault for raising arms-length fascinations of autism – movies like Rainman, and others that deal with peripheral views of disability as opposed to films like The Sound and the Fury and My Flesh and Blood which deal with in-your-face, real issues confronting those with dis-abilities. Autism Speaks and their recent parading of autism as horrible fate-worse-than-death scenarios on Larry King and Oprah don’t help. Oh but wait, “my life is better because of my autistic child” recent statements by the advocates who earlier stated how terrible their children were, is making the issues confusing (quite frankly I see no point in being politically correct when you are trying to beat the autism out of the child rather than dealing with the issues and enjoying the child you have). All of it effects our lives deeply:

We go into a store and two women who watch Adam hop to a row of books at the bookstore feel it is their right to stare at him and say “autism,” like we can’t hear them. Friends (with all the right “intentions) feel it’s okay to call out of the blue to proclaim they saw Michael Waldman proclaim that television causes autism, so gosh, it must be true and I better do something quick because I must be a bad mother for plopping my son in front of the telly (like by golly, that’s all we do all day). People feel it is okay to watch every single move Adam makes and talk about autism in front of him, rather than engaging with him. I do consider the media and representations of autism very much a contributor to the way we treat and regard autistic individuals.

There is a real difference between people calling asking “what do you think about such and such,” and authentically trying to understand. But it’s not fair to stare or to assume that all we want to do is talk about autism all day long. We don’t. I may say I don’t feel like talking about it. We don’t feel like being stared at all the time. All Adam and I want is to walk out into the world and to live our lives freely. We want to work, to go to school and live as we want and are able. While one might argue that all the fuss is raising awareness about autism, and arguably, make us able to accommodate autism better, we must also be aware of the dangers are in making people “fascinating” like “pathologies” for our consumption or entertainment, rather than really getting to know us. There are days that I feel like the political chess game called autism is becoming quite boring, and yet ironically dangerous for us not to participate in. It may be a game without conclusion and yet, a game Adam can’t afford to lose.