The Nondisabled Dilemma

“I am regularly faced with the dilemma of how to make stories about disabilities resonate outside the disability community” journalist David Perry, aka @Lollardfish tweeted yesterday. Perry is one of the few nondisabled freelancers I know of who regularly reports on disability issues in major media outlets and I greatly respect his work even if I disagree with him occasionally. (He also tweeted that in terms of the negative reactions nondisabled people have toward disabled people, pity was preferable to indifference, which I’m not so sure about.) That aside, I’m a big fan of his and am happy to see a savvy nondisabled writer “get” or even care about disability culture and politics without expecting a pat on the back for it.

It’s so rare. Like, a blizzard in July rare, or a disabled character in a movie played by an actual disabled person rare.

I thought a long time about his statement on the “dilemma” of getting nondisabled people to pay attention to our stories. This is of course a sentiment expressed by disabled people constantly (me included, usually in a hotheaded, bitter fashion with lots of cursing) and after reading his tweet I just thought “Well… Yeah.” Because we as disabled people are accustomed to being ignored by the majority. We’ve been aware of this for a very very long time and it’s exhausting. We know we’re not considered typical or commonplace despite making up about 15% of the world’s population. Instead we’re relegated to “special,” status- irregular, unnatural, abnormal. Something to be feared, prevented and eliminated. And if anyone has any doubts about that, they can look to the recent onslaught of articles examining anti-vax parents who mistakenly believe that 1) vaccines cause Autism and 2) A dead child is preferable to an Autistic child. You might also notice the glaring omission in these articles of actual Autistic children and adults voicing what it’s like for them to be consistently bombarded by the ableist viewpoint that their life isn’t worth living. And it’s not that Autistic activists aren’t out there fighting these incredibly dangerous and misguided ideas- they are, fiercely- but our society isn’t interested in the disabled perspective, even when we’re discussing disability. “Nothing About Us Without Us” is generally speaking, just “Without Us.”

I’ve seen countless examples of this, but one area that’s particularly troubling is the huge number of disability organizations and offices run by nondisabled people. This includes advocacy organizations, college disability centers, and most offensive to me, disability rights agencies. The notion that it might be inappropriate for a nondisabled person to presume they can speak on the behalf of disabled people isn’t questioned. While it would be a slight improvement if the directors of these places had a personal history with the disability community, (the majority of the ones I’ve spoken with have not and don’t even see that as a problem), the fact remains that disabled people are the most qualified experts on disability. We know more about disability than nondisabled people because we live it every day. It’s our culture and for many of us, a huge part of our identity. We should be leading these organizations, not just patronizing them. And it shouldn’t be a shock to nondisabled executive directors of disability agencies that we might not appreciate them being there.

So, how do we convince the nondisabled public that our stories are crucial and worth listening to? How do we wake them up to the cold truth that perhaps our stories don’t resonate with them because their deeply ingrained ableism makes them automatically tune us out? How do we resolve this Nondisabled Dilemma?

Take a Seat (no, don’t).

chair w/ text that says I'm going to kill you

[Image of a blue, mod, comfy chair with black text that reads “I’m going to kill you”]

I have something important to tell you all. Are you sitting down?

Maybe it’s the anxiety disorder talking, but I can’t take another “Sitting Will KILL YOU!” article. They are everywhere. Google “sitting kills you” and you’re greeted with a zillion terrifying headlines and even scarier image results. In one image, a demonic black figure lurks menacingly behind a white chair, I mean deathtrap, as the text informs us that “sitting increases risk of death up to 40%.” I hate these cartoons. I hate these articles. I hate these pernicious reminders of what I’m often assured is an inevitable, untimely death, even if I exercise. Awesome.

I get it. I really really get it. I am one wheelchair slip-on-the-banana-peel away from the grave because I’m a professional, full-time sitter. I’ve been doing it for years and my sitting credentials are impeccable. I could outsit Marina Abramovic any day of the week. I don’t foresee anything happening that will change my wheelie status into walkie status and I’m totally fine with that.

But.

I’d love the opportunity to find ways to move my body and exercise more. I think my body and ever-anxious mind would benefit. But finding accessible gyms, heated swimming pools with lifts, yoga studios and whatever else you can think of is really really hard. Not to mention the extras of figuring out costs, transportation, and any personal help I might need to make it happen.
I realize these articles about sitting being a deathtrap aren’t geared toward me or other physically disabled people specifically. But we never seem to be included in the conversation despite our risks from sitting being the highest.

So what are our options? How can we take care of ourselves with so many barriers when sitting is, you know, what we do?

Criptiques on Film: Very Special Episodes Have Arrived!

Disability representation in the media is something I think about. A lot. I often find myself cringing, sighing and cursing at news articles that discuss disability and want to throw my remote at the TV on the rare occasions when I actually see disabled characters in films or TV shows. The reason for my frustration is simple, but comes with profound consequences. The media gets us wrong. Constantly. We’re tragic. We’re “suffering from” whatever impairment(s) we happen to have. We’re incompetent. But never forget, we’re always inspirational. These stereotypes are not only dangerous but very, very lazy. And they influence not only how nondisabled people perceive us, but how we as disabled people perceive ourselves.

I feel incredibly lucky to belong to such a diverse and brilliant disability community. I’m consistently blown away by what crip artists and activists are accomplishing and the immense creativity of my disabled brothers and sisters. It gives me a sense of pride and a feeling of belonging- something that I never experienced as a young, extremely isolated, disabled girl.

The combination of utter exasperation with crip representation and a love for the (disability) arts led to the latest expansion of Criptiques. Films! My dear friend and crip sister, Cheryl Green and I decided we should collaborate on a project together. Cheryl shares my allergy to bullshit and happens to be an amazing activist, writer, and filmmaker. We applied for a grant, got it, and proceeded to make some comedy films written by and starring two disabled women. We wanted to feature content that was related to disability, but also include content that made no mention of disability at all. Because despite living and breathing disability, we’re multidimensional people and like to talk about other things. We wanted to normalize the fact that there were two disabled women onscreen, who weren’t tragic, inspirational or even likable! I wanted to play a bitch. I think I succeeded. We named the project Criptiques On Film: Very Special Episodes. The title is a reference to schmaltzy afterschool specials where characters always learn a lesson in the end- something we definitely do not do in our films. More importantly it’s a tongue-in-cheek nod to disabled people being labeled “special,” a phrase Cheryl and I find detestable and ableist. We held a screening of our films, which received some excellent press! You can read an interview with me here, and check out a joint interview with the both of us here.

All films are captioned. We hope you enjoy them as much as we enjoyed making them. Please check out and share our films- more are on the way!

Very Special Episodes from Criptiques On Film! by Cheryl Green

Special! There’s a word I don’t like when it’s related to disability. It feels like such a consolation prize. Well, we only recently decided as a nation you should be allowed a public education. So your education will be Special. We don’t think you’re good enough athletes to truly compete. So your competitions will be Special! Access and accommodations? What are those? Do we have to provide them? Not really, because your needs are just Special, not normal!

With so much long-standing, deep resentment and mistrust for the word “special,” it was only a matter of time before Caitlin Wood and I stole it, flipped it on its head, and served it back to the community as a social critique. We’re certainly not the first people to do it. But we do think we’re pretty funny at it.

Allow me to introduce you to Very Special Episodes. First, Very Special Episode is an annoying trope that TV writers use. Here are some excerpts from the trope’s definition. (I’ve changed some punctuation to make it easier to read. But I didn’t change the words.) Read the whole thing here: tvtropes.org/pmwiki/pmwiki.php/Main/VerySpecialEpisode .

“An episode…in which the lead confronts some highly emotional or forbidden issue from everyday life. Drug abuse, teenage sex, bulimia…. At the end of the episode, the protagonist is Enlightened….These episodes were far more common in the 1980s. They’ve largely fallen out of favor since then for most shows due, in part, to the increasing number of shows, particularly dramas, where issues such as drug/alcohol abuse, violence, sex, and death are dealt with on an almost weekly basis….It is also a very ripe target for parody; these days, parodies are probably as common as seeing this trope played straight.”

So with that, I offer you my second use of the term “Very Special Episodes.” Although ours isn’t straight, and it isn’t parody. Ours is satire, sometimes subtle but always scathing.

caitlin holding sign reading 'disabled'

[Image description: Caitlin holds a sign up that covers her chin and mouth. She looks off to the side. The sign says “Disabled” in alternating yellow and purple marker. The word floats in a puffy, blue cloud, filled with more blue clouds and blue birds.]

Caitlin and I received a Regional Arts & Culture Council (RACC) grant this year. The goal is to expand the brilliantly delicious, subversive, and critical ideas from the book “Criptiques” she recently edited. So we created video! (OK, we didn’t create “video.” That would indeed be a very special claim to fame. But we created some videos.) We’re excited to present the first two episodes of our web shorts called “Very Special Episodes.” Come to our screening, won’t you? We think it will be a very special event.

Saturday, December 13, 2014
2:00 – 4:00 pm
Center for Intercultural Organizing
700 N. Killingsworth St.
On the #72, near the #4 bus lines
Refreshments provided, including gluten-free, dairy-free, meat-free, and all of the food is free

Tickets: $10 per person, with no one turned away. Buy them here!

Venue is wheelchair accessible. Restrooms are accessible, enormous, and gender neutral.
This presentation will have ASL interpretation, Captions for the films, and live Audio Description

I can promise you a couple things about these shorts. Referring back to the TVTropes.org description above, our Very Special Episodes will definitely tackle some everyday life issues. But there will be absolutely no enlightenment at the end. That’s because people usually assume a story about disability will include either the disabled person becoming more enlightened (and overcoming their “challenges”), or the folks around that person becoming enlightened just by being in the room with someone who’s “been dealt a bad hand but doesn’t let it bring them down!”

In fact, get ready to see disabled characters in a way you’re not use to: totally non-inspirational, not lying in bed, not angelic and sweet, and not talking about impairments or rehabilitation. Caitlin and I are a couple of gals hanging out doing things. Despite that mundane description, we still feel it’s quite radical to have disabled bodies and minds onscreen where overcoming our disabilities is never a topic on the table.

We’re showing just the beginning of our work. The Very Special Episodes will expand in the future. So will the Criptiques On Film body of work in general. It was enough work for the two of us to wrangle ourselves, much less include other people. Caitlin and I have long been very committed to intersectional work. And that means future episodes won’t only look at experiences and perspectives the two of us hold. But for the moment, you’re stuck with us!

This blogpost originally appeared on Cheryl Green’s wonderful website Who Am I To Stop It

Criptiques Podcast Episode 3: Maria Palacios

10565015_10204335175044016_4665442169741838069_nI had the wonderful pleasure of interviewing the one and only Maria Palacios: spoken word performer, poet, and ‘goddess on wheels.’ Maria is part of the incredible Sins Invalid family, and is a longtime disability activist (she was there at the Capitol Crawl!). She recently published her most recent book, Criptionary, which is available for purchase here. We had a highly entertaining conversation, discussing her activism, poetry, Frida Kahlo and crip pride. Enjoy.

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Compliments 101 by Cheryl Green

The first rule of complimenting a disabled person: There’s no actual rule for what we will or should take as a compliment.

The second rule: If we don’t feel complimented by your compliment, don’t blame our attitude. Perhaps what you said doesn’t feel affirmative to everyone.

The third rule: It’s important for me, one person, to not write a list of rules that’s supposed to cover 20% of the U.S. population and millions worldwide. That’s why my first two rules seem wishy-washy. They’re more “perhapses” than “rules.”

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