CJ Lutke’s Blog: Representation

As a person with FASD I never saw myself represented in television or books. The closest character I could relate to was Amelia Bedelia because in the books she would take everything literally, like if someone asked her to “draw the blinds” instead of closing the blinds she drew a picture. The representation ended there. Amelia Bedelia is a fictional, one dimensional character.  I am not. Neither is anyone else. Being represented and involved in the mosaic of society is important, it is a basic human instinct to belong. It is especially hard when you are different and sometimes the differences cannot be seen. When you act or think differently, because there is no reference point or example of anyone else having these troubles one can feel very isolated and that makes things even more difficult.

I have found that not being represented has its problems. When I tell somebody I have FASD I hear a number of things like: “what’s that?” When I tell them, they say “oh yeah I’ve heard of it, but I don’t know what it is.” This is despite the fact that FASD is the leading cause of birth defects, with at least 10% of the population born with it. When someone does think they know what FASD is, they often say things like “oh you don’t look like you do” or “do you just have a mild case?” These things can be hurtful, and even dangerous. People need a reference point, and these days it is usually needs to be in the media.  When people are not represented or depicted as whole people, they are not understood, they are not accepted.

For a long time the only things people thought about in regard to FASD were the severe facial features and the shocking brain pictures of the 1970’s. So if you didn’t fit into those categories, to the majority of the public, you didn’t have a problem, therefore you should act and think and perform like everyone else. What the public doesn’t know is that the brain picture is that of a 6-week-old baby who did not survive. Our brains do not look like this. I advise anyone who has FASD or anyone that knows someone with FASD, not to pay any attention to this picture. Shocking though it may be.

In the last few years though people have started to hear about FASD and it is mentioned more frequently. However, the information being taken in by the larger public seems to be limited to a few sentences in a science or medical text book, information that is so old it should be carbon-dated. FASD has almost, in my opinion, been promoted to the newest boogie man. Something people are afraid of but never have seen. It gets mentioned but nobody knows quite what it is. Ignorance is not always bliss especially when it comes to knowledge about this disability.

This brings me to my next issue.

The things said about FASD in the media.

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