exceptional-abilism

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 20^th 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?

Enlightened Silence

Having become more outspoken lately, I find it odd that I am having more trouble expressing myself than ever before. This outspokenness has correlated with an increasing awareness of social inequalities and I think that awareness is what I find limiting.

It is not new for me to confront people about their homophobic or sexist comments. While I would like to convince myself that I was always aware of and bothered by derogatory comments directed at others, but felt that it wasn't my place to speak for them; I really don't think it is true. I knew that certain words were unacceptable but they just didn't mean a whole lot to me. I was taught to not use racially charged words, but rarely felt the same desire to challenge the language as I do with those related to sex(uality). Even worse, words implying class, sexuality, or ability were common in my vocabulary. In hindsight, I was mentally playing oppression ranking games which downplayed the issues that others face.

Farmer's tan/ Redneck: negatively implying that one works outside. By extension of this, the person is likely to be working class. Now granted being tan is acceptable and even coveted as evidenced by all of the many pale acceptance results that are generated by a Google search of “pale as beauty”. However that doesn't mean that all tans are created equal. Having tans lines following the pattern of clothing sends a clear message that you are outside not for fun, but to do manual labor. So we have terms like farmer's tan to distinguish the effects of being outside due to leisure from those due to work. A part of me is wondering if the need to distinguish between a work tan and a leisure tan has been a factor in the trend of clothing to get more revealing over time. For instance, I just bought a shirts from the men's section that were cut in the style of women's shirts from 5-10 years ago (Sleeves that would show underarm hair & a collar goes just below the V shape in the sternum) Maybe by showing just a bit more skin people can subtly prove that they have no tan lines to hide. This is definitely a racial issue as well, as time spent inside versus outside has more quickly noticeable effects in Caucasians than in other racial groups.

Suck it/Fuck you/That blows/many others: implying sexual acts as should be performed by the listener to the speaker as a form of subordination. It is very unlikely that in any given instance of these phrases being spoken that the speaker is soliciting consensual, mutually satisfactory sex. Instead the speaker is implying that one should be in the service of speaker regardless of the others needs. The speaker is saying that the listener is below them and worthy of not only a lack of consideration, but possibly a violent crime. Even when the phrases are not directed at a person, they are very sexually negative. 'Fuck it' is a way of saying that you don't care. Why would one talk about having sex with someTHING they don't care about? Because in this sense sex is used as a metaphorical weapon to distance oneself from something they can't handle. Admittedly these are the ones that I have had the hardest time trying not to use. While sex is not on my list of favorite activities, I respect that others enjoy it. The last thing I intend to do is to encourage people to use their bodies as sexual weapons against those who annoy them, but I am struggling to express frustration/dissatisfaction without being sexually negative. In trying to avoid these words I have found out that “I statements” as taught in elementary school by the counselor are the only other way I can express these feelings. This new nicer way of self-expression has made me feel more responsible for my negativity. No longer can my annoyances be projected on to a person or thing. To say 'That blows' is stating that your opinions are fact for which any responsibility rests with 'that'; while to say 'I don't like that' is to own up to one's feelings.

Lame/Retarded: implying a lesser status associated with having a disibility. Admittedly, I cannot even hide behind the guise of privilege blindness with these types of words. I grew up with a family member who has trouble walking and have seen mistreatment (usually subtle) many times and the hurt it causes. I am ashamed to look back at some of my actions regarding this since I should know better on this one. That is not to justify my use of other derogatory words as more valid because I wasn't directly affected by them; I guess it is easier to mentally give myself a pass when it comes to oppression I do not witness. Another ironic aspect to this is that I directly am affected by abilism. Granted, my epilepsy is largely invisible and I do not hear people saying 'that's so epileptic', but I still have faced stigma and should not be putting down those with physical or mental disabilities. I never considered myself to have a disability until recently and asking for accommodations at my last two jobs made me so anxious that I considered just dealing with it at the expense of my health and productivity. Again not identifying with a group does not justify stigmatizing them; this topic is hard for me because I am realizing just how many preconceived notions I carry around despite my proclaimed open-mindedness. If I can be derogatory towards groups that I should be supporting, what chance do I have to be fair to groups that I am not apart of?

For now, I will continue to try and be conscious of language. This means not waiting for someone to tell me that a word is derogatory; but critically considering what words mean and be especially weary of passive insults.