It is a long and ongoing process, but I
am learning to be okay with my epilepsy. This acceptance has lead me
to want to come out of the closet so to speak and talk about it with
people. My motivation is that I have antedotially found that by
letting people know they know someone who is/has______; it increases
their acceptance of it.
Lately though, I have found myself
conflicted about this as an approach. It is the issue I have with the
way that disabilities portrayed in the media. It can be summed up
like this: Are those affected the least by a problem the best ones to
represent it? (The seed for this rant was planted thanks to Caroline
Narby's guest blog on Bitch Magazine especially this one
http://bitchmagazine.org/post/double-rainbow-the-savant-autism-feminism
.)
In my experience, shows and movies
featuring characters with disabilities tend to follow the open-window
syndrome (OWS). That is a term I made up for the trend that
disabilities are shown as opportunities. Yes, xe has to deal with
_____ but look how good it makes heir at ______. Some of these are
blatently discussed issues within the show, others are potential as
suggested by people talking about the show. Here are some that I
have seen in no particular order.
Character |
Show/Movie |
Disability |
Acknowledged
in show |
Gregory House |
House MD |
Physical
|
Yes |
Adrain Monk |
Monk |
OCD |
Yes |
Lisbeth Salander |
Girl w/ Dragon Tattoo |
Autism |
No |
Jake Bohm |
Touch |
Autism |
Yes
|
Sheldon Cooper |
Big Bang Theory |
Asperger's
|
No |
Auggie Anderson |
Covert Affairs |
Blind |
Yes |
Brick Heck |
The Middle |
Autism |
No |
Forrest Gump |
Forrest Gump |
Low IQ/Physical |
Yes |
Charlie Babbit |
Rainman |
Autism |
Yes |
Whether or not some of these are
acknowledged by the show is debatable. In that they could just be
seen as quirks/ reactions to trauma. Jake is never called autistic,
but is institutionalized because of the way he acts; so it is a
significant trait for him. With Lisbeth, Brick, and Sheldon; their
potential disabilities could be intentional representations or just
quirks that were not intended to represent Autism. These are the
three suggested by fans discussing the show.
While admittedly, this list is based on
the media I have seen, I cannot help but to notice a pattern (well a
couple of patterns). Something I thought of after looking at the list
is that they are all white (mostly) males. Of the 7 adults, 4 are
professionals and another has the skills to be if she so choose. This
images over time, present a pattern that under-represents diversity.
My main point, is that all of their disabilities are offset by their
incredible lives.
Greg is such a diagnostician that he
does thing multiple times an episode that would get any other doctor
fired. Occasionally, he gets in trouble; but he is so good at what he
does that the hospital covers his ass. Adrian's Obsessive Compulsive
Disorder got him fired from the police force, but it allows him to
solve unsolvable crimes and become invaluable as a consultant.
Lisbeth's math skills, attention to detail, and unemotional
presentation allows her to overcome many formal barriers by hacking
into any and every computer. Jake is a child with an uncanny ability
to see the mathematical patterns behind human interaction despite the
fact that he avoids most interactions himself. With the help of his
father, this alleviates suffering of many others. Sheldon is an
astrophysicist with a lack of ability to relate to others when the
topic is not science. Auggie is a soldier turned spy. His computer
skills are so strong that the CIA made a lot of accommodations to
hire him (they show rigorous training and recruitment that he could
not have passed with reasonable accommodations being blind). Brick is
a quiet genius child in a Midwestern family; like Sheldon, he has
trouble interacting with others unless the topic interests him. The
mental and physical challenges faced by Forrest do not prevent him
from playing a significant role in most major historical events faced
by the Untied States in the mid 20th century and becoming
rich for it. Charlie's autism allows him to assist his brother in
beating the house by counting cards.
The theme amongst all of these
characters is that they all have almost magical abilities despite
their set backs. Don't get me wrong; I'd rather see successful
characters with disabilities than ones who are to be pitied. My
concern however is that it may set an unrealistic standard. “What's
that your child has autism? That's too bad, but he will be a math
genius.” While sometimes one disability can be accompanied by other
advantages such as heightened hearing in blind people; there are many
others who live without the severance package; and these people are
invisible. To me the invisibility of the average person who is/has
_________ makes it even harder to accept the average person because
we are in love with OWS and have difficulty accepting disability
without a justification. I think have difficulty accepting
disabilities as legitimate variances among humans. Instead of getting
rid of others who make us uncomfortable
http://my.epilepsy.com/EPILEPSY/HISTORY
we have to live with them. Once we stopped seeing it as a sign of
being possessed/evil, we needed something else to blame as a cause.
OWS serves as such a justification because it implies that these
super powers could not have happened without the condition.
I have no delusions of grandeur, here.
I am by no means claiming to be as smart as Sheldon, or as skilled as
Lisbeth. But I cannot help but to wonder if I am also an exception
rather than a standard representation of epilepsy. It is mild enough
that if I take my medication properly, it is rarely an issue. I was
able to graduate from college, buy a house, and get a job that I love
not only because my epilepsy is mild but also because of significant
class (and race) privilege.
Hypothetically (not anywhere near
ethically) if you took identical twins with the same disability and
gave them to families matched in every plausible way except for
socioeconomic status; one would likely do better than the other
because they could access more resources with less of a (relative)
financial strain. I do not know how my life would have turned out
otherwise; but I think it is unrealistic and harmful to deny that I
was able to get better care than would otherwise be available.
So is it really doing anything positive
to make myself into a poster-child for epilepsy when my experiences
are rare? Would this be a positive counter example to a stereotype,
or a perpetuation of one?
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