Paul K. Longmore Institute on Disability - disabled people

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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Abraham Lincoln

accessibility

Daredevil

Darth Vader

Why the Dissies?

Visitor — Tue, 09 Jul 2013 17:08:46 +0000

By: Catherine Kudlick

Earlier this year the Longmore Institute took over running Superfest International Disability Film Festival along with the San Francisco Lighthouse for the Blind. Occasionally we’ll blog about our behind-the-scenes thinking and plans, our debates, our challenges in taking over this venerable Bay Area disability cultural institution, the world’s longest-running disability film festival.

In the spirit of the celebrated Hollywood send-up, “The Razzies,” we will host our first event, “The Dissies,” on Saturday, October 12. Temporarily departing from the traditional film festival format, this one-night retrospective will gather together the formidable Bay Area disability community for an unflinching, entertaining look at the worst of the worst clips in US film representations of disability. With that renewed sense of pride that comes from bonding over reclaiming an uncomfortable past, we can return to the true work of Superfest next year to celebrate disability films that showcase our community’s ingenuity and creativity.

But for now, as we fundraise and begin to put our submission and judging processes in place, we wanted to try something unprecedented in the disability community: take the sting out of the negativity disabled people face by unpacking it together among friends. After all, it’s one thing to attend mainstream screenings or watch them at home alone, and quite another to arrive knowing that we’re among fellow-travelers whose primary aim is to shatter these images and to have some fun. Think of it like emotional judo, where a combatant temporarily works with the opponent’s force in order to triumph; you’ve got to understand that force in all its complexity to own it and make it work for you.

Besides, when we go to the movies, how often do we see disability up there on the big screen and get to laugh at outrageous portrayals and comment on them? As an imperfectly blind moviegoer myself, I am there, making conscious and subconscious comparisons with the actors and their situations: do they remind me of anyone I know and love? Do they suggest anything about me, the person I hope to be or the one I secretly dread? And how do I feel about my fellow audience members as I watch these projections: have I dissolved into being an anonymous member of a crowd or am I hiding alone among the many?

All movie-going puts people in that unnamed space between being an individual viewer and part of a whole. But when are we invited to experience this and act on it in a big room where others have shared many of the same emotions related to disability? How often do we get to indulge in acts of collective indignation at tired-old stereotypes and clichés, cloying exaggerations, cheap shots at disabled people and disability by gasping, hooting, laughing, raising collective fist and finger (or whatever real or imagined body part) into the air to say “enough already!”

Whether films take us somewhere far away outside or deep down inside, they involve an intimate dance between projection and reflection, a giant flickering mirror, not just back to us, but to the society and culture we live in. They shape how we see ourselves individually and collectively, how others see us, and how we see others. This is why movies matter, why they occupy a key intersection where entertainment, psychology, and social justice meet.

And it’s why it matters when those of us with disabilities see someone with a disability up there on the screen. For me as someone who grew up shaped by taunting and isolation, the pathetic portrayals of blind characters played by clueless sighted ones reinforced my worst fears of being an ugly, unloveable person who held things close to my face and who too often mis-reached or bumped into things and missed sighted cues, only to discover I had been the butt of a cruel joke. It didn’t help that I only came upon humiliating caricatures of someone like me, still too common, such as the recent one trotted out in the trailer for a fake Will Smith movie, Blind Ref? And what about all the movies about other disabilities, slavishly remaining true to stereotypes that careen between menace and being pathetic? (I won’t suggest any here, since I don’t want to influence the nominations and voting!) But for a compilation of twentieth-century movies made in the US and a schema for thinking about them, see Martin Norden’s Cinema Of Isolation: A History of Physical Disability in the Movies (Rutgers, 1994).

So let us come together – people with disabilities, our friends, our allies, and anyone curious enough to wonder what the fuss is all about - to hijack this dreariness by having it on our terms rather than ones dictated to us by outdated scripts. As individual viewers, most of us lack the power to dethrone the seemingly unassailable images, leaving us to feel empty and isolated, and even unsure if we’re right to challenge an industry that is so entrenched and well-financed. Sitting in a large room together with popcorn, we discover that we have never been alone when we squirm - it’s just that we never knew there could be people who thought like us right there in the audience despite what we saw up on the screen. Thanks to the Bay Area’s rowdy, savvy, audacious, smart audience of people with disabilities, we can begin to question a tired past from a place of power in a spirit of camaraderie and fun.

The process of owning the past involves actually looking at it from time to time, to see where we’ve been and celebrate the progress we’ve achieved as a movement. Combined with growing numbers of more nuanced portrayals that Superfest will showcase in the future, events such as the Dissies can help a generation of current and future filmmakers and filmgoers change expectations. For this important evening together, everyone will be experts charged with exposing and denouncing the old stereotypes for what they are. By collectively unpacking the negatives that mainstream society has forced in front of us, people with disabilities and our allies can insist on images that reflect and project the more fascinating realities we know to be true. And basking in these new reflections, we can constructively move forward with better ideas of who we are to others and to ourselves.

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people with disabilities

The Americans with Disabilities Act: Nowhere to Go but Up for Local Fox News

Visitor — Wed, 05 Jun 2013 20:43:48 +0000

Recently, the Longmore Institute was contacted by KTVU, our local Fox affiliate, about how a “SF firehouse gets costly ADA compliant makeover” to the tune of approximately $400,000. What is it with all the cheap shots at the expensive ADA? It’s incredible how the media is filled with stories of the outrageous and the egregious – the $1000 grab bar ripped out for being an inch too low, the small business forced to close its doors because of having to redo its counter or seating area. Sure, one can always find the most extreme and costly transgressions that hitch a ride along with anything big-ticket and far-reaching, be it the recent scandals over the Bay Bridge bolts, the bloated costs of California’s High Speed Rail, or – for that matter – big banks’ behavior since new finance laws went into effect in recent decades.

But the root of the resentment at the ADA suggests something more profound, a simmering sense that when it comes to disability, it’s somehow wrong to fix the environment rather than the person. Where are the stories of disabled people really benefitting from the ADA to go to school, be able to work, eat in restaurants, ride public transportation, and who now, thanks to access contribute to the US economy as innovators and taxpayers? Where are the stories of able-bodied people who benefit from this same law every time they follow a sports event thanks to closed captioning in a noisy bar or effortlessly push a stroller over the curb? And where are the stories that explore links between these curb cuts and the construction jobs they created or the great increase in product development and sales of rolling suitcases and other urban devices with wheels?

According to the Fox news story the Alleycats of Fire Station #1 south of Folsom Street couldn’t discern any advantages either, having been left “shaking their heads” after moving into their new $12-million facility. The controversial renovations included three ADA-accessible restrooms on the second floor “where the general public is not allowed to go,” features that “won’t even benefit injured fire-fighters who aren’t allowed in the station.” To reach these accessible facilities, they needed to install an especially roomy ADA-compliant elevator. The camera pans over extra-large lockers with wheelchair symbols on them and shows footage from upstairs, “where hallways are wide and for wheelchairs.” The story ends with a lingering shot of a toilet as it mentions “advocates for the disabled at San Francisco’s Longmore Institute on Disability [who] state that ADA compliant features also help able-bodied people, and say it’s better to make space universally accessible now than have to upgrade in the future.”

The reporter, David Stevenson, got our message right. But were we made to seem ridiculous as my Dad later claimed?

I struggled with his reprimand. I’d been pleased that our message came through unaltered, figuring that even if the not-so-subtle association between us and a toilet said one thing, surely our enlightening words prompted some viewers to think differently. But here was my 87 year-old father, one of my most vocal advocates, finding this as yet another case of Fox News and the right-wing media skewing stories at his daughter’s expense. His visceral reaction to the segment’s using the Longmore Institute to show disability advocacy at its most extreme suggested that our case for finding unintended benefits for everyone in disability accommodations remains completely foreign. Even though our message wasn’t taken out of context and was presented on its own terms, the report on Fox appeared to confirm the outrageousness of our stance and with it, our naïveté.

As with any news story, our message got distilled down to a shadow of its bare essence from a much longer interview. David Stevenson seemed genuinely open to our examples, not in a preparing for a “gotcha!” but in a “whoa, never thought of that!” way. Assistant director Emily Beitiks described the ADA’s gifts to her when she was pregnant, which she blogged about on “Disability Remix” several weeks ago. I invoked the history of curb cuts in the early 1970s, which most city officials initially decried for similar reasons to those concerning the firehouse renovations; for such huge costs, few would use them. An official in Berkeley, home of one of the first curb cuts, allegedly argued that they were useless because one never saw disabled people in wheelchairs on the streets.

Such chicken-or-egg reasoning suggests profound ambivalence about the places people with disabilities should and shouldn’t occupy in US society. The ADA has brought us out in larger numbers with greater expectations and louder demands. People with disabilities have crossed a threshold that is simultaneously visible and invisible, a transgression that leaves some – disabled and nondisabled – uncomfortable without realizing it or knowing why.

The Fox story touched on this by opening with the hook that these were “renovations for those who might never become firefighters.” True enough, at least for those on active duty. But who wouldn’t appreciate more space in a locker and locker room, airy hallways (probably meeting basic safety standards as much as ADA ones), and an elevator that not only had made moving in easier but that might one day hoist a giant fridge, water heater, or any number of awkward-to-transport, costly objects useful in a fire station, from the hefty to the fragile? Possibly these accommodations reminded these brave men and women of their own vulnerability, as if enjoying the same benefits as “the handicapped” would be tantamount to being one of them.

Often, disability reveals how all of us come with largely unexamined preconceptions about the world around us, to the point that we sometimes miss some obvious questions. In the case of KTVU and Fire Station #1: if they expected public visitors on the ground floor, wasn’t it surprising that the architect hadn’t planned for an accessible toilet downstairs? Surely the hardworking staff servicing the trucks and preparing to race out to fight fires would have found it a godsend. And what about that grateful little wheelchair-riding kid with a full bladder and a love of fire engines visiting the station with classmates?

Link to the news segment here.

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Americans with Disabilities Act

Disability History Gets Forgotten Each Halloween

Visitor — Tue, 30 Oct 2012 22:26:33 +0000

By: Emily Smith Beitiks, Assistant Director

As a proud recent addition to the Paul Longmore Institute on Disability, I was recently reminded of Paul Longmore's essay exploring how every Christmas, negative representations of disability abound through the popular Christmas character Tiny Tim. Alas, Christmas isn't the only holiday that invokes problematic notions of disability.

Tomorrow is Halloween and many thrill-seekers across the country will visit haunted houses, hoping to make it through without embarrassing themselves in front of their friends and family. From Denver to Las Vegas to Flint, many haunted houses pull in large crowds by offering an "asylum" theme. Sometimes, the asylum theme is entirely fictionalized, but a few attractions even take place in abandoned institutions and hospitals, using the history of institutions to make for an even scarier attraction because "the fear is real." Once inside, attendees can expect to be scared by doctors and nurses, and at center stage, patients with mental and physical disabilities.

I'm struck by the need to add "haunted asylums" to the many sites we seek to challenge as we work to make disability history more widely known. The Longmore Institute's mission statement explains that we "introduce new ideas about disability and disabled people." Haunted asylums, which forward the idea that people with disabilities are menacing villains worthy of our fear, represent an out-of-date understanding of disability, which is deeply harmful and must be thrown out.

The history of institutionalization is indeed horrific, but the abuses that were committed were overwhelmingly directed at residents with disabilities, not the other way around as haunted attractions suggest today. Yet these horror playgrounds of disability succeed because the history of institutions is not widely known. That so many people flock to these attractions year after year shows how much work we have ahead.

The Op-Ed below is a piece I co-wrote with James W. Conroy last Halloween, responding to a particularly troubling variation of the Haunted Asylum in Spring City, Pennsylvania. To read a more detailed account of the attraction described below, you can also access my essay, "The Ghosts of Institutionalization at Pennhurst's Haunted Asylum" in the Hastings Center Report available here for free.

I'm all for Halloween, but let's keep the fear focused on candy and ghouls, not people with disabilities.

Haunted Pennhurst attraction the 'final indignity'

Pottstown Mercury, Saturday, November 12, 2011
Emily Smith Beitiks and James W. Conroy

The name Pennhurst is infamous in the disability rights movement — not once, but twice.

Pennhurst opened in 1908 as a school for people with physical and mental disabilities. By the time it closed in 1987, it had become an iconic symbol of segregation, overcrowding, abuse, and neglect. In a momentous victory, a federal court order mandated Pennhurst's closure for violating the constitutional rights of the residents, who had done no harm to anyone. The people who left Pennhurst went to small family-like homes with 24-hour support and services, where their lives were enriched in practically every way we know how to measure. (See Temple University's landmark Pennhurst Longitudinal Study, 1985.)

In 2010 and 2011, infamy has once again tainted the name of this place in our community — for the Halloween attraction known as the Pennhurst Asylum. The attraction:

uses imagery of people with mental and physical disabilities, which abuses the memory of the 10,400 Pennsylvanians who lived and mostly died under horrendous conditions,
mistreats the buildings that deserve preservation,
and finally, insults the community itself by being the worst kind of "neighbor" imaginable.

Once Pennhurst was finally shut down, it sat abandoned for two decades until entrepreneur Richard Chakejian purchased the property and turned it into a haunted house along with Randy Bates, haunted house expert. They maintain that it doesn't play on the site's history. Yet they concurrently legitimize the attraction's tagline, "the Fear is Real," by citing facts (some of them even true) about Pennhurst's past. The distortion of history and myth trumped up to make money worked well for the The Blair Witch. The only problem is that Pennhurst's people were real. Last Halloween, Pennhurst Asylum opened its doors for $25 a head and the haunted house was attended by thousands — such a success that it reopened this year and expanded. There is fear at Pennhurst, once again. And once again, it's based on ignorance.

Pennhurst deserves sacred memorialization and preservation. Out of national shame came national triumph — though very few people know about it. It was at Pennhurst that the right of all children to attend American public schools was won in 1972. The "Right to Education" has had a profound impact on all children with disabilities and their families. It happened right here, and it happened because of the outrages at Pennhurst. Secondly, it was Pennhurst where the nation finally learned that there is a "better way" to support people with developmental disabilities, not in large institutions but in small, family-like community homes.

The Pennhurst Historic Marker, placed last year on Route 724 near Bridge Road, tells of Pennhurst's national importance. We encourage our neighbors to visit that marker, read the words on it, and think about ways to preserve and memorialize what happened here. It was tragic for many years, but the story also includes hope and progress.

In this light, it is most shameful that the current attraction is causing so much disruption and dismay among the neighbors. The township that is considering permanent zoning changes might also demand common decency in its deliberations — as well as a more appropriate use of this historic site. This second round of infamy is not good for our locality the way things stand — it is, in fact, the final indignity.

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