I have mentioned this issue before, but in a media saturated world, I think this message bears repeating. The way that people with disabilities are portrayed in the media matters. They may seem like simple pictures, memes, paintings, posts, and movies to you, but they are more than that. They are a reflection of my reality. They are the ideas that tell people who will never meet me or someone like me what to think and how to treat a person with a disability. If people are disabilities are not included in the media at all, it tells those whose only exposure is through these sources that people like me don't matter enough to even appear in works of fiction, never mind it real scenarios.
These portrayals honor or shame my way of life, and too often, they shame. They present stereotypes and exaggerations as the truth, and the truth is usually taken out of the hands of the group to which it belongs…. That is, the people with disabilities themselves. That is the fundamental problem with consistently offering roles of disabled characters to people who do not actually have disabilities, which has been called "disability drag". Then will come the media storm about how the actor, non-disabled of course, looked so authentic, so poignant, and almost made us believe that he was “one of them”. The fact is we are not characters to be played by those seeking praise for putting on a costume and mimicking us. For every nondisabled actor who receives the role portraying a person with a disability, I assure you that there was a person with a disability anxious to portray his or her own truth denied the opportunity. And the disability drag game continues, the praise and the awards continue for “looking so real” as if there are no “real” disabled people left to tell their own story, or we are too exotic to be found in the present day. If you are looking for a real dinosaur to cast in the role of himself, I understand the need for mimicry. But people with disabilities are not a fossilized population whose story must be resurrected by others for lack of first-hand accounts. We are still here. Our history is still being written. We are past. We are present. We are future, and we are capable of representing our people.
I would perhaps be less bothered by the concept of disability drag if people with disabilities looking for acting roles had the opportunity to turn the table and go able-bodied to get a job. But the fact is, we don’t have the ability to walk or move or ditch our wheelchairs for the sake of a role, and no matter how good we are at acting, we will never be chosen for a role intended for an able-bodied actor is our disability is visible. Thus it is rather difficult for an actor with a disability to get a meaningful part given that the available roles are so limited, and then what they do appear, they are often given to a person without disabilities lauded for doing such a good job imitating us as if we are no longer alive to live, not imitate, the disability community.
But that aside, the portrayals themselves reflect the misinformation still circulating about us. Still, most of the disabled characters are either superhumans or pity objects awash in self-loathing. Media makes people who are invisible in society visible, and when the only truth made visible is a stereotype, the attitudes that pity object or super cripple are the only shoes we can ever fill are allowed to continue. It is true that some people with disabilities may have sad lives, but this is not the only aspect of our story that exists. Just like people without disabilities, our lives are happy and sad, and simple and complicated, and joyful and frightening and hopeful and uncertain, depending on the day. Yes we suffer sometimes, but so do many people without disabilities. As I've said before that's not the nature of life with a disability, it is the nature of life.
Fortunately for able-bodied people, they are portrayed so frequently that one experience is not extended to the entire group. But people with disabilities are portrayed so infrequently that the few times they are will be used again and again to make assumptions about an entire group. That is why characters with disabilities and people with disabilities need more time on the screen, in the books, in the magazines, on the TV shows in varied storylines that represent life on the full spectrum of human experience. This is especially true for television shows and books directed at children, who are both our most impressionable minds and the minds of the future. If we change the way they look at us now, perhaps when they grow into adults, greater strides will be made towards acceptance and not misconceptions. Perhaps kids who have disabilities will more often be able to identify someone who looks like them in their storybook and feel proud to be disabled instead of ashamed or afraid. For every Forrest Gump doing extraordinary things, meeting famous people and running across the country, for every Colin from The Secret Garden wallowing in bitterness on the other end of the spectrum, there are people with disabilities in every nook and cranny in between, seeking and living ordinary lives, that embody just another variation of a diverse population. They are mothers and fathers, friends and sisters and brothers, teachers, and students, far both from becoming a superhero and becoming a tragedy.
In my travels in cyberspace, I was fortunate to connect with the folks at Extreme Kids & Crew in Brooklyn New York, an organization that focuses on recreation and acceptance in safe spaces for people with disabilities. This year, they will be giving out the first Felix Award, which strives to do exactly what I have been discussing. To change the perception of what it means to be disabled today, and honor those who use the arts as a vehicle for change.
They state that, “While living with disability and caring for those with disabilities is no picnic, neither is it the gloomy tomb it is often made out to be. Indeed the challenges, pains, frustrations, and injustices associated with disability can lead to creativity, resilience, humor and novel ways of perceiving the world. Much of the disconnect between what disability looks like from the outside and what it feels like from the inside has do with misunderstanding and inexperience.”
What a beautiful place, or more beautiful place, I should say, the world could become if more people in the arts and in the world understood this, and honored the Felixes of the world in a way that treated their lives like the varying stories that they are.
Or as EK&C so eloquently put it, if they “moved the general public’s perception of disability away from fear and loathing towards a more nuanced wonder at the multiplicity of being and the diversity of experience.” I think wonder is just what we need, wonder at how lucky we are that all people are different. Different not less. Wonder that will allow kids with disabilities and their families to look around and know that they don't have to be afraid because the world wants them to grow up proud.
The arts are an amazing and peaceful tool to start sculpting that wonder for future generations. Your pens and paintbrushes and pencils and crayons are not just mundane objects. They are those things that can give a message to the world, that can construct a person or a group as important or unimportant, visible or invisible. They are those things that can give people with disabilities power, and quietly but mightily reshape the way society sees us. They are the method we have to preserve our truth when one day we are gone as individuals, and all that remains are the renderings we have left behind to tell our stories. When the history of my people is told, long after I am gone, I want the world to have an imprint of my life that goes beyond a stereotype. Artists, use your instruments well. Whatever you bring forth with them will tell our children what to think about people with disabilities and have a direct impact on the thousands of children with disabilities shaping their self image in a world too often not made for them. Make your choices carefully, and use those instruments for good.
Check out Extreme Kids & Crew's Felix Awards at http://extremekidsandcrew.org/news/introducing-the-felix-awards/