Writing #7

This was published in the January '09 issue of New Mobility (www.newmobility.com)

Speaking on Our Behalf

By Jody Michele Powers

Unless people have personal connections to the disability world, they have no business writing or speaking about disability issues. It’s that simple.

I don’t usually make such black and white statements. After all, I have cerebral palsy. I know full well the injustice of putting limitations on people. No one ought to say people with disabilities shouldn’t be parents, nor should anyone say another person would be better off dead than live with a severe disability. Everyone is different, and one can’t make a judgment without knowing all the facts of a situation. Creating such sweeping generalizations doesn’t work in this world of shades of gray. So, why did I just make a generalization about people who lack personal connections to the disability community?

First, people who have no personal connection with the disability world tend to write or speak about us in stereotypical ways. We are either the Superhumans who teach the world about courage, strength, and humanity (the Forest Gumps), or we are the Pitiful Ones who are helpless and needy (the Tiny Tims). Seldom do we meet characters who are more complex. The result? Society fails to see us as we truly are: contributors, taxpayers, friends, lovers, neighbors, consumers, criminals, artists, employers, worshippers, saints, sinners, leaders, sisters, brothers, parents, achievers, slackers, and everything in between.

More tragic is what these stereotypes do to our understanding of ourselves. As a person born with a severe disability, I was disgusted with the thought of people pitying me. As a child, I promised myself to never give anyone that chance. I became the smart, funny, outgoing one who couldn’t share her struggles. I couldn’t even hang out with other kids with disabilities for fear of being labeled as “one of them.” It wasn’t until years later that I could accept and embrace the disability culture.

Of course, advancing stereotypical images of people with disabilities isn’t the only problem that comes when outsiders address disability issues. There are those people who transport themselves into others’ life experiences by merely doing research. They have a knack of describing a worldview that is totally different from their own.

Tracey Koretsky is an author who has such a gift. In her book, Ropeless, Koretsky enters the disability world by describing one woman’s journey to find her identity apart from being the caregiver of her older brother who has severe cognitive disabilities. The story does an amazing job at describing the possible sensitive dynamics of a family in such a situation. For instance, the mother becomes consumed with her son’s (Paully’s) disability. The isolation that this family feels as a result of the son’s disability is also discussed. The novel also reveals several other sensitive topics that families with disabilities face.