Paul K. Longmore Institute on Disability - representation

When Social Media Lets Us Down: A Search for Community (in all the wrong places)

Visitor — Thu, 21 Jul 2016 23:02:22 +0000

By: Robyn M. Ollodort, Longmore Institute grad student assistant

In an age of technology, sometimes the community we seek is best found in real life.

Chances are good that if you're reading this post, you're online hoping to connect with community. Type the name of one of your identities into a search bar, and you expect to find results that call to you, that draw you in. But what happens when they don’t? I am not an ambassador of the chronic illness brand. I can't run a race to find a cure. I don't own any Livestrong-style rubber band bracelets. I don't participate in hashtagged challenges, ice bucket or otherwise, on social media.

But I am #sick.

I was diagnosed with Ankylosing Spondylitis in the summer of 2012, just days before my 21st birthday. AS is a flaring condition that generally involves the spine, resulting in eventual fusion of the vertebral column or effected joints. But, because I had juvenile AS that went un- and misdiagnosed for at least ten years prior, the effected joints in my body were the sacroiliac and hip. I have experienced the pain and joint discomfort I now know to call 'flares' for as long as I can remember; however, AS in my body does not just mean flares of chronic pain and inflammation. I also experience chronic fatigue as a result of AS, which may be the even more debilitating symptom. I have been tired all the time, for as long as I can remember, and no amount of sleep or stimulants has changed that this far. I have never been an athlete. I was not robbed of my ability to climb mountains. And no amount of healthy eating or exercise will stop me from needing to take a nap OR having a flare. Because, believe me, I have tried.

The thing is, this is not the common experience of arthritis, and I know this, because as soon as I was diagnosed, as soon as I had a term to type into search bars, I wanted to find other people with this disease. Other people who gave themselves shots. Other people with chronic pain and fatigue.

Taking to the internet, I found a Facebook support group, with people sharing their stories of spinal column fusion, childbirth and heredity concerns (AS has a genetic component), and an overabundance of #spoonie and #spondy baby talk photoshopped over generic images of awareness ribbons and nature scenes. This is just not who I am.

And that's what makes it so hard for me to navigate the social media communities of support set up for #chronicallyill people with #arthritis like myself. I was born in the 90’s and grew up with technology; shouldn’t I be able to find the community I’m looking for through it? Especially when it seems like everyone else in their early-to-mid-20’s is doing just fine, connecting over twitter and Facebook groups on all kinds of issues and experiences. Why was this so different?

I’ve written previously about how important I think representations are for identity. I wanted to see people, around me or otherwise, who also have to stab their abdomens with burning serums. I wanted to see people who sneered at running, and curl up on couches with bags of popcorn for Netflix marathons instead. Watching reality TV (a thing I do quite often, and am very passionate about), I was excited when Real Housewives of New York City’s Jill Zarin’s daughter, Aly, had some kind of undifferentiated spondyloarthropathy that no one really talked about, and I watched with anguish as the cast of Shah’s of Sunset doubted Golnessa “GG” Gharahedaghi’s struggle with rheumatoid arthritis and chemotherapy. But I wanted to know people in real life who deal with similar things as me. GG, looking defensive while receiving chemotherapy as treatment for her rheumatoid arthritis. Image found here.

My body betrays me constantly, I can't trust it, and maybe that's not the best way to relate to others. It's not the best basis for connection, the disease that makes me feel trapped in my own body.

But also, what these groups seem to be bonding over (pregnancy stories and decades of anguish in the healthcare system, respectively) were not the things I was concerned about; they weren’t the same questions as the ones I was asking.

Beginning my second semester of my second year of graduate school, I received an email seeking paid interns for the Superfest: International Disability Film Festival. I write about representations in tv and film, so naturally I jumped at the opportunity. In pursuing an interview, I noticed that the ad specified that the participants had to be students with disabilities – the first time my having a disability qualified me to do something special, let alone a major career move! The difference I found between support groups/Facebook pages and my experience with Superfest is that watching the film submissions, we were discussing the deeper issues of the social constructs of disability: how we are seen in society, how we want to be seen, how to make our experiences funny, and political, and REAL. The people I met were like me: college students, with full lives and career plans, and also real, life-changing experiences that shape our views of the world. We take our bodies seriously, and use our experiences of them to inform our political perspectives. Plus, we got to spend three hours a week eating snacks and watching the best movies I’ve ever seen (links direct to curated list of trailers of my favorite Superfest films: Breakfast at Ina's, Neighbors of the Other Type, Underland pt. III, Terminal Device, Supersonic, Awake, respectively)

Now, don’t get me wrong – I’m still struggling to find community, especially in places that I thought it would come naturally; but the critical gaze is much more fun when shared with friends. Author on the left. Image courtesy of SFSU Academic Technology, via Youtube.

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Ankylosing Spondylitis

chronic illness

disability

guest post

Superfest: International Disability Film Festival

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On Recent Heartaches

Visitor — Wed, 15 Jun 2016 17:39:46 +0000

When Media Representations Aren’t Good Enough to Let Us Live By: Robyn Ollodort I want to begin by expressing my feelings of shock and grief over the acts of violence leveraged against the queer of color community this weekend. As so many have already expressed such beautiful words to describe their sadness over the loss of lives and hurt for those injured, I can only repeat those sentiments: while marriage equality felt like progress, these moments remind us of what is left to overcome. When violent acts of this scale occur, every body is impacted, and I find it necessary to question the structures that put bodies, whether they are gay, disabled, racialized, gendered, etc., in harms way in the first place.

Like many folks in my generation, I use the internet when big things happen, from so-called reputable news sources to the opinions of those I trust, like bloggers and popular culture commentators.This post reflects this process, as I jump from blog posts and quotes that have informed my thinking and feeling over the last few days.

This Tumblr post, which popped up in my feed and seems to be quite popular right now, has a particularly emotional draw, a relatable sentiment right now; in it, the author expresses emotional exhaustion over the shooting in Orlando, a fatigue derived from grief, media misrepresentation, and taking for granted the hard-won ‘safe spaces’ afforded by gay rights and liberation movements, which have been preyed on by corporate sponsors. The author points to a common media trope, referred to as ‘bury your gays’, where gay (usually fan favorite) television characters are routinely sacrificed in order to further heteronormative plot narratives – the cited article notes the series The 100, but many other examples are readily available (*cough* Tara in Buffy *cough*).

This trope of queer characters serving merely as storyline fodder, reminds me – like I can forget! – of the recent backlash by the disability community against the film Me Before You, which precariously places a heteronormative relationship within the context of a man who is paralyzed from injury and his quirky female caregiver. And, as you have hopefully already read (and hopefully not seen), the dude ends up dying, because although his heteronormative love enriched his live, it wasn’t enough to save him from his disability, and thus… death??? Just as ‘bury your gays’ gives us, as viewers, a broader range of characters to identify with, only to off them, I want to argue that ‘bury your crips’ works the same way; viewers get characters with disabilities, characters they can identify with and relate to, until they are killed off (Million Dollar Baby, The Sea Inside, etc.).

As a phase 1 judge for Superfest: International Disability Film Festival 2016, I saw enough films to counter that narrative (119 to be exact!); films with complex, leading roles written with or for (or both) people with disabilities. I saw characters that looked like me, and had similar experiences to me, and characters that were nothing like me with whom I also fell in love. And none of them had to die in order for their films to be supremely excellent. The sentiment I am getting at here is that when nobody looks like you in the media you watch, that’s devastating; but, when you finally see ONE character who looks like you, whether that character is gay, or Muslim, or in a wheelchair, or transgender, or black, Latina, Asian, whatever you are, ad then that character is killed? It’s a tragedy. And it makes those real life tragedies even more plausible, because, as the bad trope goes, people like that die on TV or in the movies all the time.

"Yes, and the body has memory. The physical carriage hauls more than its weight. The body is the threshold across which each objectionable call passes into consciousness—all the unintimidated, unblinking, and unflappable resilience does not erase the moments lived through…"

— Claudia Rankine, from Citizen: An American Lyric (Graywolf Press, 2014)

A body has memory. Our bodies, however they are marked in society, carry the weight of the legacies of that mark. We remember all the traumas, we feel all the pain. We need to do our best now to make space for those wounds to heal; to make futures we can see ourselves in, futures that have people who look like us in them. This means telling stories of people who are gay, who are transgender, who have disabilities, who have dark skin. This means making characters who are different, who survive, who thrive and love. This means making real and good representations, and allowing the people you are representing to tell their stories, too.

In thinking about how to incorporate diversity into representations in the media, I really appreciate this article by Australian athlete, advocate, and blogger Robyn Lambird, expressing the necessity for better representations of people with disabilities. “Through accurate and expansive media representation, we can normalise disability, shift the negative attitude surrounding it, and highlight the issues that the disabled community face. Through this, we can create a more understanding society that is open to beneficial change.” This call is applicable to more than just disability, but to all non-normative identities as well; when we are better represented, we are better understood, and it is harder to justify violences, big or small, against us. To conclude, here is a statement of solidarity from the late visionary, Mark Aguhar:

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Superfest: International Disability Film Festival

tropes in media

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SFSU Student Video about the Longmore Institute

Visitor — Wed, 17 Feb 2016 18:38:25 +0000

By: The Paul K. Longmore Institute on Disability

Every year, Betsy Blosser, Professor of Broadcast and Electronic Communiations Arts (BECA), teaches a class where students create a video to promote a non-profit. In addition to further developing their skills as media makers, they learn to work with a client. Much to our good fortune, in Spring 2015 the Longmore Institute got to play that role...and we will fully admit that (for important reasons) we were a challenging client for the students! We asked them to think not just about how they would convey the mission of the Institute, but also to build in audio description and captioning, which no one in the class had ever done before. Check out how it turned out:

[youtube https://www.youtube.com/watch?v=dkZGKpKR-p4]

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The First Disabled Lego?

Visitor — Fri, 29 Jan 2016 19:27:06 +0000

By: Emily Beitiks

Big news this week, from CNN to the Guardian: Lego has unveiled its first disabled character, a wheelchair rider: Cynically, one might call this "Handicapitalism" by Lego - a commercialization of disability rather than a genuine effort to diversify their characters. But even without questioning intentions (or the value of children who use wheelchairs to be able to play with a Lego with whom they identify), there is a simple factual misrepresentation in this story.

This is NOT the first Lego character with a disability.

There's a hierarchy within disability. Too often, we reduce disability to mean a person in a wheelchair, and we forget the rich array of bodies that are included in disability communities. Also, we fail to see disability when it's associated with a bad-ass hero... instead we expect to see disability in the pitiful and the tragic.

There are at least 5 disabled Lego characters that have been popular for awhile (in addition to the many disabled by mean older siblings or parents who made the painful mistake of stepping on one):

The Pirate

Cathy Kudlick, Director at the Longmore Institute, has long been pointing out to people that we fail to see pirates as the "disability action figures" that they are. With a hook hand, an eye patch, and a peg leg, this guy has a disability trifecta!

2. Luke Skywalker Star Wars fans have long had the option to purchase Luke, pre- and post-amputation. Even with his hand prosthesis, he still is another example of a "disability action figure."

3. Darth Vader Full disclosure: I haven't seen the movies in a long time and my efforts to pin down the exact reason why Darth Vader dies without using his mask to breathe yielded WAY too many results that didn't help. But he counts.

4. Abraham Lincoln While the exact condition is unknown, geneticists and historians believe that Abraham Lincoln had a genetic condition, similar to Marfan syndrome.

5. Daredevil He's blind and uses echolocation to fight bad guys.

And who knows what sort of invisible disabilities these guys might have?

Congrats to Lego for adding a wheelchair riding Lego, even though it is not their first disabled Lego. Now kiddos: build these little fellas some ramps and accessible houses!

*Which Lego characters did I miss? Let me know in the comments section!

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Dos and Don'ts for a Freaky (But Disability Positive) Halloween

Visitor — Mon, 12 Oct 2015 17:51:08 +0000

By: Emily Beitiks

Halloween is just around the corner...time to bust out that polyester costume you bought in college and ask yourself: can I pull this off for one more year? We can't help you answer that, but follow this list of "dos and "don'ts" to ensure that all your Halloween fun doesn't come at the cost of disability justice...

DON'T: Watch horror films that equate being disabled or disfigured with being evil or menacing. Of, if a friend drags you along to one, try to voice a subversive question loudly before the film starts, like "You know what's really scary? The amount of discrimination people with physical anomalous conditions face?"

DO: Dress up as a pirate or mermaid and celebrate the fact that you're also a disability action hero! Read more here.

DON'T: Visit an asylum-themed haunted house! Join the many disability advocates who have boycotted these attractions that neglect the real history: asylums for people with mental illnesses and institutions for the developmentally disabled were horrific places where disabled people were abused and neglected. Read more about one especially controversial Pennsylvania-based attraction here.

DO: Point out to nondisabled children and adults dressed in awkward-to-walk-in costumes that every time they manage to fit through a wide door frame, they owe thanks to the disability rights movement.

DON'T: Dress up in a costume that mocks people with disabilities, such as a mental patient. And while we're at it, don't wear costumes that appropriate the history of people of color either...

DO: Celebrate difference and use your disability as a resource for especially creative Halloween costumes. Or...go as whatever you want! HAPPY HALLOWEEN! We hope it's an especially freaky one!

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Can Pirates and Mermaids Be Crusaders for Disability Rights?

Visitor — Tue, 03 Dec 2013 00:36:24 +0000

It always happens. I’m introducing someone to the Longmore Institute’s mission to flip thinking about disabled people by challenging what everyone takes for granted. Invariably, there comes a moment when I know I need help that can only come from the high seas. So I pull out my Longmore Institute mascots, three plastic pirates that are about two inches tall and line them up on the table or pass them around the room. They’re dressed in bright colors, arms extended, ready to pounce. One has a rifle in one hand and a hook for the other hand; another one with an eye patch and wearing a waist-coat holds a spyglass in his non-hooked hand; a third, also with eye patch and hook, wields a sword. “What are these?” I ask.

Murmurs throughout the room until someone ventures to state the obvious, “Pirates?”

“Sure,” I say, “but aren’t they also disability action figures?”

Then it happens: I feel that indescribable catch, that moment I live for as a teacher, the collective intake of breath when you know you’ve gotten inside someone’s head. Some just sit there and hold the little guys, some shake their heads, some blurt out what I’m sure most people must be thinking, “whoa, I never thought of that!”

Suddenly everyone is full of questions:

“Why don’t we think of pirates as having disabilities?”

“But pirates are bad, do we really want to associate disabled people with crime and murder when existing impressions are already bad enough?”

“These are pirates of old: wasn’t everyone more or less disabled anyway back then?”

“Are there other examples like this?”

“What about mermaids?”

Indeed, what about the mermaids! Who knew to think of a graceful woman with a single fin instead of two legs as having a disability! I’m ecstatic because now the questions and curiosity have taken on a life of their own. In a split second something that always seemed obvious and self-evident has been turned upside down, and now everything might just be up for grabs.

But given all that needs to be done to improve the lives of people with disabilities, do pirates and mermaids really matter?

As director of the Longmore Institute, I wrestle with competing imperatives in the struggle for disability rights. On one side is the need to fight for a base line of accessible, affordable housing, quality healthcare, reliable, adequately-compensated attendant care, better education and higher graduation rates, improved job prospects and working conditions. On the other is the struggle to change hearts and minds, to offer the tools, the ideas, the stuff to combat internalized shame and the external prejudice and low expectations that constantly undercut people with disabilities in ways large and small.

Enter the pirates and the mermaids. Probably they won’t be much help with the base line, daily life stuff, frivolous, cute, not the real struggle. And yet….

Imagine the person growing up with a disability thinking not just about the Tiny Tims, but about a life full of risks, adventure, danger, and power. Imagine potential employers or employees who grew up thinking of mermaids as elegant swimmers able to go places where no one else can or of pirates as gutsy and resourceful. A generation of disabled people who carry around pirates and mermaids might help change not just hearts and minds but also the dismal employment statistics for people with disabilities. Journalists, editors, film-makers, novelists, publishers who have held a pirate as he transformed from adventurous renegade to disability action figure will be more likely to provide a wider variety of portraits and stories which in turn will influence healthcare providers, teachers, expecting parents, kids on the playground, aging baby boomers, returning vets, and most likely others. Politicians, CEOs, policy wonks, judges, and anyone who has encountered images of disabled people outside the tired old stereotypes will be more likely to introduce and support legislation, allot funds, and champion initiatives that benefit the lives of disabled people.

A stronger case needs to be made for the essential role culture plays in improving the lives of people with disabilities. Too often our society views small things like pirates and mermaids as insignificant or luxurious, when in fact they represent a key, often unguarded, entry point into changing attitudes that pave the way for the big stuff like employment, housing, and better services. Consider the recent excitement over creating toys that will inspire girls to become engineers. Here’s to a future where kids with disabilities dream up new ideas, including lady pirates, gentleman mermaids, and many other colors in the adventure rainbow.

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social construction theory

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