The Rhythms and Patterns of Life

In the last issue of Making a Difference, I wrote about my conflicted opinion of the reality show Born this Way and how I wasn’t sure it was a realistic portrayal of the experience of families with members who have Down syndrome, or if it was even important that the portrayals rang true. In this issue we want to continue exploring the representations of people with disabilities in media, whether TV, movies or print.

Since Born this Way, I’ve also begun watching Speechless whose main character is a high school student with cerebral palsy who doesn’t speak but uses a light-activated wand device, his occasionally rabid Mom, a couple of quirky siblings and accommodating Dad; and I’ve been reading the Disability weekly columns in The New York Times written by people who experience disability in various ways and their observations on some aspect of “life with.”

What makes a good portrayal of people with disabilities in the media, or a good portrayal of people of any diverse characteristic for that matter? What makes that portrayal appeal to the broader public so that we react to it, nod, think, oh yeah, laugh or cry, not at the person or situation, but with? I had to back up from watching, listening and reading to think about this.

At the AUCD (Association of University Centers on Disabilities) annual conference, I watched the movie, Valuing Lives: Wolf Wolfensberger and the Principle of Normalization, and a short phrase in the film struck me as the benchmark for assessing the integrity of media portrayals of people with disabilities or indeed, as I said above, anyone from a diverse background.

The Swedish psychologist who preceded Wolf wrote that the historical segregation and isolation of people with disabilities deprived them of “experiencing the rhythms and patterns of life.” I considered this principle against the TV shows I’ve seen, and it provided a lens through which to view them. Are the individuals portrayed experiencing the rhythms and patterns of life that a non-disabled person would experience? Or are they portrayed as “special” or somehow “other than?” JJ, the young man in Speechless is shown experiencing all the rhythms and patterns involved in navigating high school, including running for class president, getting drunk at an illicit party, and teaching his classmates to think about the barriers to his inclusion in creative and humorous ways. The writers of The New York Times column Disability, are diverse, honest, occasionally in your face, occasionally funny, but they meet my new filter of reflecting the rhythms and patterns of life.

I’m no media expert, but I know what I like, and now I maybe have a better idea of why. I’ve become so sensitized that I cringe at portrayals based on either pity or heroism. One thing I have always said about Mia is that she is who she is. She’s not always happy and loving. She can be crabby, stubborn and as I’ve also said, smart enough to be manipulative! But she is who she is because she does experience the rhythms and patterns of life of her family, her job, her neighborhood, her faith community and her friends. The extent that these rhythms and patterns of life are available and accessible to us all will determine how authentic our representation is in the world.