Daily Archives: 16 June, 2010

Disability in Pop Culture: I know where the Black Stork Comes From

Don and I went to see this great romantic comedy a few summers ago. IMDB tells me we saw it in 2008. It’s called Easy Virtue, and it’s one of those delightful romps where a young upper-class English boy brings home his wild American wife who is older than him, basically to upset his parents. It’s set in 1929 and has all those great things that movies have when they’re set in that time period – jazz music, flapper dresses, British manners, cigarette smoking as sexy and cool, etc, etc etc.

The take-away message was that if you really love someone with Cancer, you’ll kill them if they have to undergo too much chemotherapy.

As this was around the same time as we confirmed Don’s cancer diagnosis, you can imagine that this kinda ruined the awesome movie-going experience for us.

When people tell stories about families like mine – the dude in the wheelchair with omg!cancer, the crazy lady who hides under her desk so nothing can get her – they tend to tell three stories: “Bitter Cripple Who Needs To Be Schooled By Abled-Folks About How Their Life Isn’t Over Yet”, “Overcoming Adversity: A Very Special Lesson”, and “It Sucked, And Then He Died”. The heroes of these stories are almost always the Able-Bodied (and it is very much a “broken body” trope – narratives of madness are different). There never seems to be fictional narratives about the world-famous scientist who just happens to have neuro-muscular dystrophy, or the renowned US historian with the award-winning books who just happens to use a ventilator, or the actor who, after a disabling injury, refuses to become a director and just happens to land a role in a major television series. If these people showed up in fiction, their disability would be the story. Because that’s the story that is told about disability.

Whose life is it anyway?

So I come back to story after movie after very special episode where the person with the disability, the cancer, the catastrophic illness, gets themselves out of everyone’s way by killing themselves or begging others to do it for them. I remember every narrative where disability = evil, where disability = faked, where disability = a lesson, a punishment, a blessing in disguise, a test, a momentary difficulty that is healed when the bitterness goes away, because fictional disability never just is.

This continual fictional narrative of disability as trope is what makes me distrustful of disability in fiction. If I want to watch a show that appeals to me and includes people with disabilities treated realistically, I have to go back to Joe Dawson in Highlander. If I want to watch a fun movie romp, I’m back at Sneakers. If I want to have a long conversation about assistive tech, I’m at X-Men and Star Trek: The Next Generation. If I want to watch something that looks even vaguely like our lives, I’m at Joan of Arcadia. If I want to see a show where someone has some power, a love life, and just happens to have a disability, I’m somewhere in Season 2 of The West Wing.

I don’t want to play Disability Cliché Bingo every time I try and engage with pop culture. I do not want to watch a medical drama because we have enough medical drama, and with three types of narcotic painkillers in the flat I’m not fond of the addiction narrative. I don’t want to watch a show where the creators and show runners cannot type “wheelchair dancer” into YouTube and see what comes up. I cannot stand the idea of watching a show where a secondary character is disabled specifically to punish the main characters. I do not have an interest in US football’s glories.

Tell me stories about the people with disabilities I know: The ones who work hard every year to ensure an internationally renowned con is accessible to people with disabilities, the one who co-founded a successful social networking site, the ones graduating from university this month, starting it next year, struggling through grad school without enough support, parenting their children, advocating for their rights, organizing support in Chicago, running role-playing games, managing businesses, founding a successful feminist website, writing beautiful poetry, publishing academic papers, doing their rounds at the hospital, planning disability-focused conferences, planning tech-focused conferences, cooking dinner, making documentary films, getting through today, planning tomorrow, arguing with their parents, their children, their spouses, their friends, writing blog posts, drinking tea.

We are so much more than this, so much more than tropes, clichés, or tragedies.

Recommended Reading for Wednesday, June 16, 2010

I am having difficulties accepting we are halfway through June.

[Via the gimpgirl community on LJ] Couple Exchange Vows in Central Park

When two partners who receive SSI benefits get married, Medicaid reduces those benefits to 75 percent of the total that both individuals received prior to marrying. As a result, many couples with disabilities, like gay and lesbian couples, seek domestic partnerships or live together without formalizing their commitments.

Activist Danny Roberts, who was unable to attend the ceremony, sent a recording of his opposition to the policy. On it, he told a story about meeting the woman he loves at the Empire State Building observatory at a protest.

“We allow ourselves to be demeaned into begging for what we need to live,” Roberts said about the receipt of Medicaid. “If we comply, we can’t marry the ones we love. It’s not illegal but it is essentially suicide.”

Books for the Blind, Not A Liberal or Conservative Issue

One week ago we at Planet of the Blind wrote a post decrying New Jersey Governor Chris Christie’s budget plan calling for the elimination of the Garden State’s lending library for the blind. The so called “Talking Book” program (which is directed and administered by the United States Library of Congress) has been recording and distributing books for the blind since the great depression and they have done so with remarkable professionalism and devotion. Recorded books for blind and physically disabled readers are not your average commercial audio books. They are recorded and developed in ways that allow blind readers to access the same books you might read in your public library and in effect this service makes it possible for borrowers to read far more printed material than one might find in the audio books section of your local Barnes and Noble. Talking Books represent the nation’s library, and in a very real sense they represent our nation’s conscience.

Yet it was inevitable that we would receive a vituperative comment from a reader who identified himself as being conservative (for so we must presume given his disdain for “liberals” who, he argued, support government waste.)

More Detroit Disability Justice Happenings

They say 20,000+ social justice activists will be traveling to Detroit this week for the Allied Media Conference (17-20), US Social Forum (22-26), and the Hip Hop Congress Conference (26-28). A lot of communities are using this time to organize and people are coming in on every mode of transportation possible: bikes, buses, caravans, planes… It will be the first time (that I know of) that a large number of disability justice folks will be gathering together to be in community with each other, build shared politic, and strategize about how to incorporate this new framework into our lives and our work. It has taken a year of finding resources and planning to make the events below happen, hope you can join us!

Don’t Have Answers

The DSM and the ICD almost go out of their way to pathologise queer people, although there is no longer any diagnosis of Homosexuality. The DSM-IV-TR and the ICD-10 do, however, pathologise trans identities (Gender Identity Disorder, Transsexualism, Dual-Role Transvestism) and asexuality (terminology varies considerably). They also pathologise a number of consenting sexual practices like fetishism, BDSM, making “obscene” telephone calls. And, because there wasn’t enough heteronormative fail already, they also pathologise anxiety due to not knowing if you’re gay or straight (Sexual Maturation Disorder), and having non-long-term relationships (Sexual Relationship Disorder). Notably, there is no disorder of Being An Unmitigated Heterosexist Shit Disorder, so we can safely conclude that heteronormativity is a factor here.

For some time, there has been a campaign to have Gender Identity Disorder (GID) removed from the DSM-V.

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I am terrified of that moment. As most people I know are. I know women that haven’t ever gotten a pap smear, ever once in their entire lives, because of that moment. This is not an unusual terror.

Now that “health care” is going to be available to more of us…I can’t help but wonder. How many of us won’t go to the doctor any damn way–because the doctor and “help” and “health” is predicated on terror? Or a type of test taking? You take the test and you pass! Or, you take the test and you die!

Shiyiya brought my attention to We Are Enabled By Design at the Design Museum in London, UK.

“We are Enabled by Design” is a one day event, looking to reframe the ageing and disability debate by focusing on Design for All.

We believe the world is made up of people who have a range of abilities, with each person having their own personal strengths and qualities. We are passionate about harnessing these strengths to empower people to live as independently as possible. Design for All taps into this by focusing on meeting the needs of as many people as possible, to make either a product or service accessible. By mainstreaming accessibility, this can help to remove any stigma attached, while making people’s lives that bit easier and in turn more manageable. For us, Design for All means accessibility for the masses.

Headlines:

Complaint Box: Assumptions “Maneuvering through New York City as a person with cerebral palsy can be a constant irritation. Just making my way down subway stairs at rush hour, with people breathing down my neck, is holy terror. But it is not the physical strain of steps and crowds that is my main source of anxiety. It is the naïve, inappropriate and sometimes downright mean comments that people make.”

Textbook describing Down Syndrome as “Error” triggers debate “Books used by seventh graders in Bridgewater, Mass. schools describe Down syndrome by saying “the extra chromosome is the result of an error during meiosis.” The section on the chromosomal disorder also uses the term “mental retardation.””

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