Why The Discussion About #BornThisWay Is As Important As The Show Itself

“Although personal interaction is the most effective medium for conveying the personal experience of disability, the mass media can be an effective vehicle for bringing about greater understanding, and a consequent gradual change in public perceptions, of people with disabilities.” – Marilyn Dahl (The Role of the Media in Promoting Images of Disability- Disability as Metaphor: The Evil Crip, 1993)

it's time to talkOver the past 24+ hours, social media has been ablaze with commentary from within the Down syndrome community about what #BornThisWay does, and does not mean to our community. Much of the conversation is fueled by emotion and at times it has gotten quite heated. I’d like to take a step back from the feelings, and offer a slightly different perspective, one informed by critical disability studies and academic writings on disability in the media. (For those who might not be aware, there is an entire field of study devoted to the representation of disability in the media.)

 

It is, after all, a business venture.

Producers of the show have surely considered who their audience will be.

The Global Down Syndrome Foundation reports that total number of people who have Down syndrome is currently unknown because of faulty statistical methods, but:

  • 38% of Americans know someone with Down syndrome.
  • The population of people with Down syndrome in the U.S. has been estimated to be over 400,000.

It’s hard to say whether these numbers alone would convince A &E to invest in Born This Way.  More likely is the theory that those involved are banking on a wider appeal. For that, the cast of the show would have to be entertaining and able to generate a connection from a general audience. Language is a big part of that. So, for this groundbreaking series, it was important for audiences to be able to understand, and subsequently relate to the characters.

Those of us with loved ones who struggle with expressive language know how frustrating it can be to watch them fight to be heard or to not hear them at all. The problem arises when media representation of “people like us” or those we love is so scarce. We crave the connection. When the opportunity finally appears, there is bound to be some level of disappointment if what we hope to see is not there.  It is possible to be elated by the fact that there are finally real people who have Down syndrome being represented in the media and at the same time be sad that those representations don’t reflect our own lived experience. (Like John says in episode 1 – We are human after all.)

 

Rain Man promotion photoMedia Effects on Perception of Disability

While we celebrate the opportunity to see young adults who have Down syndrome on television, especially as they go about their everyday lives, we also have to consider what those particular lives say to an unfamiliar public.

Marsha Kinder writes about how the, groundbreaking for its time, film Rain Man (1988) set the tone for future representations of people with Autism in the media and basically created a stereotype of autistic people.

By choosing to make Raymond an “autistic savant”—…the film helped establish the “savant” as a misleading stereotype for all individuals on the autism spectrum, since only around 10% actually display this pattern. Even the film’s primary scientific consultant, Dr. Darold Treffert (the world’s leading authority on the autistic savant syndrome), acknowledged … “There is a danger of walking away from the movie with the impression that all autistic persons are savants and that all savants are autistic.” Yet, he claims: the film’s positive impact offsets this risk for it “did more to bring autism and savant syndrome to the public attention than any other public-education effort had done up until then.” – Interacting with Autism

Cast of Life Goes OnThose of us whose children were alive when Live Goes On (1989-1993) appeared on television, experienced this phenomenon in action.  Many of us heard phrases like, “Oh, your son has Down syndrome like Corky,” or “I love Corky,” the assumption being that our child would be like Chris Burke. Kinder reports the same reaction from people who viewed Rain Man when it was first released, “…whenever Grinker mentioned his daughter was autistic, people would ask, “You mean like Dustin Hoffman in Rain Man?””

I felt a bit of both gratitude and fear each time I heard it. Mostly, I was happy that people made the connection and that it was positive. Chris was and is an outstanding person, full of determination and self-advocacy, that anyone connected to Down syndrome can’t help but be proud of. Ultimately though, the fear would hit me in a moment of – but what if my son doesn’t do as well as Chris?

Throughout social media, and in personal conversations I’ve had, parents have expressed concern that their friends and family, as well as strangers on the street, would view Born This Way and question why their own child didn’t speak as well as Steven, or have a job like Rachel… It’s an unfortunate, but very real consequence of the limited exposure most members of society have to disability.  This issue is two-fold. First, it creates the opportunity for parents to second-guess themselves. “Did I” or “Am I doing enough?”  While the inspiration to set high expectations could help some, the possibility of undue guilt also exists.

More importantly is the possible effect it might have on people with Down syndrome who watch the show. Only time will tell us to what degree self-advocates will speak out about what they see and how they feel about the show. Until then, I offer this word of caution from experience: don’t make assumptions or generalizations about how every person with Down syndrome will react to what they see.

Getting images and portrayals out there is important. What those images say about and mean to the community that they represent is equally important. The creators and cast of Born This Way took an important first step, for which we should be, and from the reactions I’ve seen, are grateful. Because this is such a new and rare experience, (the only other similar project being The Specials which did win a couple Webby awards) we can expect there to be an abundance of discussion triggered by it.

The next step is to listen to the reactions of all those who are affected by this.

The key is to listen with the purpose of understanding in order to continue to do better – down the road.

 

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