Paul K. Longmore Institute on Disability - Emily Smith Beitiks

Super Bowl has a Different Tone this Year with Disability Harder to Ignore

Visitor — Fri, 05 Feb 2016 23:08:53 +0000

By: Emily Beitiks

The players in Sunday’s Super Bowl are participating in what is, essentially, a celebration of hyperability. Who can run fastest, throw furthest, and tackle the hardest? Football demands lives devoted to physical achievement and commitment to excellence. We applaud their sacrifice and ability to come back after being knocked down again and again.

But this year, a dark cloud hangs over the celebration: the American public has discovered that a variety of disabilities, physical and mental, develop after thousands of hours being battered in this high-impact sport.

Recent media has made it harder to neglect the ghost of football players’ future. Mostly, this has focused on the NFL league’s active concealment of the impact of repetitive concussions in a legal settlement between the NFL players and the league, a documentary, and Concussion, a major Hollywood film starring Will Smith.

At Sunday’s game, retired football star Joe Montana will lead the coin toss. But in an interview with USA Today, he shared that “It’s one of the things he can do without feeling pain, which is the daily cost of his Hall of Fame football career.” He listed a lengthy array of impairments from nerve damage in one of his eyes to knee pains that remain after countless surgeries, making public the aftermath of the game.

Are the less financially successful retired football players struggling with inadequate access to healthcare and assistive technology that so many disabled people face? Are they experiencing stigma and discrimination for these impairments and struggling to find employment?

With Superbowl 50 in the backyard of the disability rights movement, there’s no better time and place for these questions to emerge. As fans, we need to ensure that there’s more support for football players after the years on the field catch up to them.

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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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TEN ACCESS BLUNDERS THAT THE NONDISABLED MAKE

Visitor — Mon, 14 Dec 2015 19:08:09 +0000

By: Emily Beitiks

Well, it happened again. Last night, I was hosting an event and even though the topic was access for people with disabilities, I made a big access blunder. The event was running late, and I failed to consider the fact that the ASL interpreters needed to clock out, putting them and the Deaf attendee in a difficult and unfair position.

These sorts of slip-ups are common for all of us who host events, disabled and nondisabled alike. But we don’t share our mistakes often enough. As a nondisabled ally, I think it’s especially important that I cop up to my moments of failure because I owe it to my disabled friends and colleagues who patiently teach me when I drop the ball.

I also know now that access isn’t just about accommodations for people with disabilities. While society may see disability as a burden, I know that disability opens up creativity and innovation. I’ve personally benefited from many access features intended for people with disabilities. I am grateful for open captioning, for example, so that if I lose concentration during the pivotal moment in which a speaker provides the argument of their paper, I can look to the captioner’s screen for what I missed. With a co-sleeping 9 month old baby at home, this feature has been particularly useful lately.

Having worked with people with disabilities for over ten years, I see that bodies and minds are on a wide spectrum; there is no “disability community” but rather “communities.” So working to make our world more accessible to disabled communities is challenging, and sometimes I make mistakes. In hopes that it may help you learn, here are my top ten memories of failure for your enjoyment in no particular order:

1) I’ve failed to introduce myself as nondisabled.

When I speak on behalf of the Paul K. Longmore Institute on Disability, it is important that I disclose my status as a "temporarily able-bodied person.” Failing to do so not only hides the place of privilege from which I speak but also renders people with invisible disabilities on the panel as nondisabled.

2) I’ve booked interpreters for events and forgotten about the importance of schmoozing with other participants before and after the official event.

While calling it “networking” may make some of us cringe, it’s incredibly important to people’s professional and political work. If we want to continue to eliminate the divide that has long existed between people with disabilities and the Deaf community, we need to build in opportunities for conversation over a glass of cheap wine and a cheese cube or two.

3) I put out flowers at an event.

Classic rookie move. We gotta have flowers at the bar to make things pretty, right? Wrong. The flowers make your event dangerous for attendees with multiple chemical sensitivities. So, go with paper decorations or just pass and enjoy that it’s one less thing on the event planning “to do” list – woohoo!

4) I gave a PowerPoint presentation and did not describe my slides.

Okay, before I lose all my street creds here, please note that it was a long time ago when I was an undergrad. But it wasn’t just any presentation. The focus was disability. And my low-vision adviser was in the audience. Huge fail?: yes. Did I learn?: yes. Should you learn from my fail and start giving audio description of your slides?: YES!

5) I planned for wheelchair seating but forgot that wheelchair riders sometimes travel in packs.

Another classic nondisabled rookie move. Yes, of course, I have wheelchair

Two attendees at Superfest 2015.

seating! Oh…you’d all like to sit together? FAIL. At Superfest: International Disability Film Festival, we now have a range of options for wheelchair riders to sit with their other wheelchair rider companions, to be next to non-wheelchair riding friends, or to sit in the multiple chemical sensitivities section. We’ve come a long way baby.

6) I’ve organized events and forgotten to ask if the stage is accessible.

Even if none of the planned presenters uses a wheelchair, you still want to plan for the possibility of a wheelchair rider pulling a Kanye-West-interuption-of-Taylor-Swift move, so the stage must have a ramp or lift. Nondisabled allies should not leave this battle to the wheelchair rider colleagues to fight alone.

7) I’ve pushed handshakes.

Plenty of people in the disability community shake hands, but handshakes need not be the norm. Whether one doesn’t have hands, doesn’t have control of their limb’s movements, or is triggered by the social anxiety of contact, handshakes can cause a lot of unnecessary grief so ask first.

8) I’ve lined up venues without gender-neutral bathrooms.

Hosting events for people with disabilities requires you to think about all the needs of your attendees beyond disability issues.

9) I’ve pressured people to commit to full-day events.

This is a common conference strategy: you pressure your attendees to stay together for a whole day, three days, whatever so that the group may adequately bond. Or you push for an early start and urge people to “power through” with short breaks. However, this is an ableist model. It doesn’t account for the needs of people who require a long time to get ready, long bathroom breaks, or people with chronic fatigue.

10) I’ve hogged the microphone.

Full disclosure: I’m still working on this one. I like to talk. And oh do I love a good Q&A. But if I’m on a panel with people with disabilities, I need to constantly remind myself that my voice must often come second. My confidence with public speaking is inseparable from the privileges I have as a nondisabled, white, heterosexual person.

So… what did I miss? Jump on the comments section and share please. There’s no comprehensive guidebook for this stuff (and if there was, the first item would be that guidebooks aren’t going to prepare you for everything). A reminder in closing, it is better to have tried and blundered than never to have tried at all. Getting to work with disability communities is worth it. *Special thanks to Corbett O'Toole for her patient guidance on my access blunders as well as this post.

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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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Planning Accessible Events

Visitor — Wed, 15 May 2013 20:54:05 +0000

By: Emily Smith Beitiks

The Longmore Institute recently hosted a panel and reception honoring the work of Paul K. Longmore (in case you missed it, you can watch the captioned video here). Leading up to the event, my mind was rushing with all the things to keep track of: adequate space for wheelchair riders that doesn't block the path but also doesn't quarantine them to one section of the room; tracking down the comments from all the speakers to give to the captioners; directions and signage that clearly lead attendees to the event, preventing attendees from accidentally ending up in the Westfield mall, the Bermuda triangle of consumerism. Now that we've planned a few events that strive for maximum accessibility, we like to think we're getting the hang of it, but the concern is still always lurking: if we can't put on an accessible event, what right do we have to ask it of other events and organizations?

Much to our delight, nearly eighty people of all shapes and sizes quickly filled the room. In fact, it was so packed that we rushed to put out additional chairs [an accommodation for the leg users who did not bring their own], spilling into the open space we had reserved for the reception.

The panel was deeply emotional, filled with both laughter and sorrow as close friends and colleagues shared their memories of Paul Longmore. While the panelists were speaking, Longmore Institute friend and supporter Corbett O'Toole passed me a note. Since she has already saved us from many unanticipated pitfalls of inaccessibility, I immediately unfolded the note with a sense of foreboding. The note read: "I'm concerned about these chairs in the back. You don't want anything in the way of a crip and their food and wine." Grateful, we whisked away the chairs the moment the panel ended, and whew, our refreshments were accessible for all.

I offer these behind-the-scenes moments for they illustrate an important lesson that often gets neglected when we talk about access for people with disabilities: thinking about access only gets you half way there. To go the rest of the way, you must also think about culture. Many have argued that disabled people have a culture, just like other minority groups (the institute's founder Paul Longmore liked to say that this culture even involves a cuisine: fast food!). Corbett's friendly reminder - this crowd will not be shy about grabbing those hors d’oeurves you're offering, so plan accordingly! - provided yet another example to back this up.

As we continue to push our events to make each one more accessible than the last, may they also be supportive of and contributing to disability culture.

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A Thank You Note to the Disability Rights Movement

Visitor — Fri, 08 Mar 2013 20:27:02 +0000

By: Emily Beitiks

As a non-disabled person, I am often asked by other able-bodied folks what motivates my disability justice work. I explain my story: that my mother has been disabled since before I was born, that the experiences I had growing up made me realize the importance of eliminating barriers for people with disabilities, both physical and cultural. But often, I still get a response that makes my skin crawl with deep awareness of my able-bodied privileges: "That’s so good of you to help the disabled people!" I have long tried to develop a snappy response that articulates how completely off the mark this is. I am not a do-gooder, I'm selfish! However, I've previously struggled to come up concrete examples that make my case.

On November 15, I had my first child, a son named Carver. Like everyone says, it has been the most amazing experience of my life to date. After having now survived 9 months of pregnancy and the first three months with my newborn, I realize that motherhood has given me numerous illustrative examples of how the work of disability scholars and activists has benefits for us all, to which I for one would like to express my gratitude. Below is my thank you note. I encourage others to write their own!

Dear disability rights movement,

I apologize that this thank you note is so belated. You've been helping me out for a long time now - curb cuts when I travel with luggage, elevators at the end of a long day - but recently, I have really reaped the benefits of your efforts in ways that deserve acknowledgement.

Thank you so much for the accommodations you've fought hard for and won. While pregnant at San Francisco State University, my protruding belly made it hard to fit into the smaller bathroom stalls, but fortunately, there were accessible ones in every building. I took advantage of the disabled seating at the front of the bus. And in those final weeks of pregnancy, I could not have been more appreciative of elevators! Thank you!!!

I’d also like to thank you for teaching me that bodies can best function in many different ways and that I should throw "normal" out the door. During my first days home with my son, it seemed that I had permanently surrendered one of my arms to cradling my newborn, and the hourly task of breastfeeding required the use of my second arm as well. Like the folks I’ve met over the years without the use of their arms, I quickly embraced using other parts of my body in place of arms. That burp cloth that was just out of reach could be pulled closer with toes. An email-checking addiction could be appeased with a nose on the iPad in place of fingers.

When I returned to work, I found that I needed to be more public about my body’s different needs. I often had to use a breast pump machine without privacy, once in the middle of a restaurant during a lunch meeting, another time in a busy hallway. Without my background in disability studies, I might not have had the guts to be so public about my leaking appendages, but thanks to you, I quickly learned to stop caring about the oddness of it all and instead prioritize the needs of my body.

And if that wasn’t enough already, I have one more thing for which to give thanks: thank you for helping me realize that interdependence is a beautiful thing. While pregnant, I required help getting out of bed to go to the bathroom multiple times a night. I thought that this was what it meant to depend on my husband, but nothing compared to the hours of labor where he attended to my every need (which primarily consisted of holding my barf bag through each contraction) and the days of recovery that followed. Sometimes indepedence is just too exhausting to pursue, and my understanding of a disability rights perspective helped me quickly admit this to myself with immediate benefits.

I realize that there are undeniable differences between these experiences. Namely, pregnancy is a temporary condition, making it much easier to embrace my heightened needs knowing that they would soon pass. Additionally, pregnancy and childbirth are praised in our society so I did not face the stigma that disabled people encounter. My dependence on my husband would never be named a “burden,” and though public breastfeeding might be slightly awkward, I was never likely to hear someone say, “If I was like you, I’d never leave the house!” Together, we have more work to do, challenging what society values and why, but in the meanwhile, thank you, thank you, thank you for the gains I can already enjoy today.

Wishing you the best,
Emily

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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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