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/
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