Paul K. Longmore Institute on Disability - Longmore Institute

Longmore Institute Seeking Disability Studies WikiPedian

Visitor — Thu, 29 Sep 2016 20:35:55 +0000

This post is cross-posted from the Wiki Education Foundation site; view the original here. By Ryan McGrady on September 29, 2016. Definitions of disability are often cast in medical terms. While important, concentrating on that one aspect of a disability-related topic can mean inadequate coverage of other social, cultural, historical, economic, and political aspects. Writing a high-quality Wikipedia article about the subject thus typically means drawing from research in the sciences, but also in the social sciences and humanities. Getting access to those sources, however, can be a challenge for Wikipedia editors, who may run into barriers like paywalls. When Wikipedians can’t access the necessary materials about a subject, articles and perspectives within articles can be neglected.

For that reason, San Francisco State University (SFSU) is opening access to its library resources for a Wikipedian interested in disability studies.

As with other Visiting Scholars positions, the Wikipedians aren’t required to be physically present at the university. The only expectation is that they bring some of the articles they work on in that subject area to B-class or better over the course of a year. For most Wikipedians who would be applying for such a position, that’s the sort of activity they would be doing anyway, but now with access to high-quality research resources.

The opportunity is supported by SFSU’s Paul K. Longmore Institute on Disability, which works to challenge stereotypes and showcase the strength, ingenuity, and originality of disabled people. For Associate Director Emily Smith Beitiks, the Visiting Scholars program is a way to support the Institute’s mission by helping to improve public knowledge about disability on Wikipedia, using the rich resources collected by SFSU to build well-rounded multidisciplinary articles.

If you’re a passionate Wikipedian with an interest in this field, we’d love to help connect you. You can apply for a Visiting Scholar position here and, if you have questions, drop us a line: visitingscholars@wikiedu.org. For more information about the Visiting Scholars program, see the Visiting Scholars section of our website.

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disability studies

Emily Beitiks

J. Paul Leonard Library

Longmore Institute

New Orleans Students Sell Brownies to See "Patient No More"

Visitor — Tue, 16 Feb 2016 00:52:13 +0000

By: The Paul K. Longmore Institute on Disability

Last year, a teacher reached out to the Longmore Institute, saying that she had a group of students, all with learning disabilities, who wanted to see our exhibit "Patient No More" at the Ed Roberts Campus. We hosted many field trips over the exhibit's six-month run, but this call was unique; the teacher was calling us all the way from New Orleans. The students would first have to fundraise in order to make this trip happen, so they launched a GoFundMe campaign called "Berkeley or Bust" and sold brownies to drum up enough funds.

To share the history of the 504 occupation with students who had traveled so far and worked so hard was a wonderful moment for the Longmore Institute. We arranged for 504 participants Maureen Fitzgerald, Corbett O'Toole, and Dennis Billups to come out and share their stories with the students. Watch this 2.5 minute video (audio described and captioned) of the students' day at the Patient No More exhibit:
[youtube https://www.youtube.com/watch?v=jymnOKRlC1M&w=560&h=315]

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Gazing into The Eye of Power

Visitor — Thu, 03 Dec 2015 20:54:23 +0000

By Michael Williams

Michael Williams poses in front of his photo from 1977 at the Patient No More exhibit.

I have been a frequent visitor to the Longmore Institute's Patient No More Exhibit, which opened in July at the Ed Roberts Campus in Berkeley. Every time I go, I marvel how well the exhibit tells the story of how the first piece of Federal disability rights legislation came about.

I played a small part in these events. With my KPFA radio press pass, I was able to move freely in and out of the sit-in at the San Francisco Federal Building while other protestors could not re-enter if they left the building. After weeks without any federal response, a contingent of San Francisco protestors, including myself, traveled to Washington, DC, to directly confront President Carter, Congress, and Health Education and Welfare Secretary Califano and demonstrate on a national stage. My strongest memory of the San Francisco 504 protest in Washington, DC is John King and me crashing Joe Califano's luncheon speech at the National Press Club.

Here's what happened when I got in to Secretary Joseph A. Califano's address at the National Press Club luncheon on April 27th, 1977. (Remember, I had a KPFA radio press pass.) I don't remember the hotel it was in, or the subject of JC's blathering; all I remember is John King, me, Evan White, and KGO cameraman Ray Weiss entering this fancy hotel, taking the elevator to the lower ballroom where we found ourselves surrounded by a sea of guys in suits wielding walkie talkies. I had a slight moment of panic when I thought, Well, if I didn't have an FBI record before, I certainly do now. John and I checked in at the press table, and to my amazement they let us enter the ballroom with no questions asked.

There didn't seem to be any protocol as to where people could sit, so John and I grabbed two seats at a front table right under the dais. We ate the cliché chicken luncheon meal; it tasted just as cliché luncheons found in novels do. The meal ended and Califano began his talk. As I said, I don't remember what he was talking about, but I do remember staring daggers at him all the way through his talk. When the talk was over and the floor was opened for Q&A, John King asked a question that to this day I don't understand the meaning of. He asked why the security level had been raised to yellow. "Is that because of the protests?" I was baffled; Califano was puzzled. Califano said he didn't know of any yellow alert, but the protesters should be pleased in a few days. The luncheon ended shortly after that, and everybody headed for the elevators, included Evan, who got in real trouble for shoving his way onto Califano's elevator. Meanwhile, when I got outside, I wasn't watching where I was going and careened off the sidewalk curb onto the hotel driveway, all of which Ray Weiss caught on KGO's videotape.

That was the end of my association with Joseph A. Califano until the evening of April 15th, 2004, where the Secretary, accompanied by his wife, was appearing in Berkeley at Cody's Books, to plug his memoir, Inside: A Public and Private Life. I was among the scattered few in the audience. As I was listening to his remarks, I wondered if he would mention anything about 504. Well, indeed he did—including that bit about the feared headline, "Dog Bites Cripple."

While he was talking, I was furiously typing something into my speech generating device that I wanted to utter during the Q&A. Califano fielded several queries before I worked up the courage to raise my hand and say this:

"Hello mister secretary, my name is Michael Williams. You and I share a tiny piece of history together. I was one of the people who occupied the federal building in San Francisco during the five oh four demonstrations of the mid-nineteen seventies. I want you to know that the five oh four regs completely changed my life and took me on a path I never thought I could travel. I look forward to reading your book. "*

To my utter embarrassment, my remarks were greeted with vigorous applause by the assembled few. I glanced over to Mrs. Califano. She was staring daggers at me.

The Secretary inscribed my copy of his book thusly:

"For Michael—Who gave us the energy to put out the 504 regulations—Joe Califano"

While he was signing my book, I stole a glance at Mrs. C: She was still staring daggers at me.

*This quote is typed and punctuated exactly as input into my speech generating device for my intended pronunciation.

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The "Patient No More" Mural

Visitor — Mon, 19 Oct 2015 23:07:37 +0000

By: Catherine Kudlick

A large mural features 504 protestors and celebrates the spirit of "Patient No More." Click here to see an expanded photo of the mural.

What might appear to the public as the anchor and one of the most striking features of “Patient No More” was far from certain; in fact, just a week before the exhibit launch, we debated whether it was the right use of our resources.

Still, our team of three - Curator/Graphic Designer Fran Osborne, Longmore Institute Associate Director Emily Beitiks, and Director (Me) - had been planning for something in that great rotunda wall all along. It offered a daunting blank canvas, so central, so white, so easy to make a giant mistake, yet so full of potential. And the ramp wall was red. Very red.

At the beginning we tossed around a number of ideas, from a detailed timeline to a large simple rendering of the iconic “Sign 504 Now!” yellow button or a large “Patient No More” banner.

I can’t remember when we first came upon the idea for the dramatic seventy-foot photomural above the ramp. But it had something to do with the generous photo donations from HolLynn D’Lil, Anthony Tusler, and the Bancroft Library. For the exhibit stations we had sifted through scores of them, nearly all of them black and white. We had to make tough choices about what to include, while having to leave others out. Each time, we came back to the intense, joyful, determined faces of the participants.

For the first couple of years we approached it as a memorial to commemorate the lives of occupiers who had passed away. Naïvely maybe, we believed we could identify and account for everyone in all the photos. But the deeper we got into the project, the more we realized this would be impossible: too many people came and went, too many had disappeared into history.

And there were practical concerns. We dreaded the prospect of someone very much alive arriving at the exhibit only to find themselves up on the wall. And what would we do if someone died once the mural had been put up?

Ultimately, we decided to celebrate the people with disabilities associated with the occupation. We tried to create a mosaic of individuals who made up a vibrant group whose coming together transformed the struggle for disability rights.

If this wasn’t a memorial, we needed to decide on the story we did want to tell, assuming it was possible to tell one at all. If a picture is worth a thousand words, imagine putting 27 of them in conversation! Who looked at whom across the rounded wall all day and night?

Curator Fran Osborne spent countless hours sifting through photos with students, coming up with templates, sending us different examples, trying to get the balance. Did someone appear too often? Who was missing? Which pictures deserved to be larger? And which ones could actually be blown up to such a large size without being distorted?

We knew so much depended on a viewer’s location while looking at it: from the rotunda, from the ramp itself, going up, going down . . . . Like life itself, things completely changed with perspective.

And how to convey something so striking, so important, so visual to people who couldn’t see it? How to be true to our mission to incorporate access to everything in our exhibit, though not necessarily in the same way for everyone? Our solution: commission poets Eli Clare and Leah Lakshmi Piepzna-Samarasinha, each who identify as people with disabilities to respond creatively with sound poems (check them out below).

It’s hard to describe my first impression of the mural in all its glory. It sits somewhere between hearing those sound pieces read by the poets and walking into the Ed Roberts Campus rotunda just two days before our launch and seeing it on the wall. It was maybe the closest I came to understanding a sense of victory and permanence after working so hard on something that I sensed deep down would make a difference.

Two mural moments confirmed this was true. The first was the day of our launch when 504 participant Michael Williams posed in front of his photo from 38 years before: wearing the same button, same smile, same sense of defiant pride. Many other occupiers, their friends, their families have found people they knew up on that giant canvas.

Then one day around closing time at the Ed Roberts Campus, I came upon an older gentleman slowly making his way up the ramp where he wanted to get close to the mural. “I always wondered what this place was for!” he exclaimed as he turned to me. “I rush through here every day to catch BART, and for some reason today I looked up. My god, I had no idea! I’ve seen some of these people all over Berkeley!” When I introduced myself as being associated with the mural, he smiled and said, “Wow, this is history!”

http://www.youtube.com/watch?v=a7U616jiE5M http://www.youtube.com/watch?v=FpF85SfwxIo

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20-Question Quiz to Determine Your Disability Literacy

Visitor — Tue, 06 Oct 2015 23:43:09 +0000

TAKE THE LONGMORE INSTITUTE'S 20-QUESTION QUIZ TO DETERMINE YOUR DISABILITY LITERACY

With October officially recognized as National Disability Employment Awareness Month in the U.S., we thought it would be fun to give folks a chance to rate their own awareness. Jot down your answers and then proceed to the next page to total your score. And no need to ask for accommodations for extra time because you can take as long you need and as many times as you want!

Part I: Feelings

Which of the following do you find most inspiring?

a) a boy with learning disabilities scoring a touchdown in football, after two rival teams decide together they will allow this to happen

b) a woman rising from her wheelchair to take a few steps across a stage

c) learning that over 100 people with disabilities occupied a government building to demand their civil rights and ultimately got what they wanted

d) none of the above

When I hear someone being corrected for not using person-first language (i.e., "a person with autism," "a person with a mobility impairment," "a person who is blind," I:

a) nod in agreement, knowing that person-first language is a sign that somebody gets it about disability

b) blush for the person being reprimanded, wonder how many other ways I'm blowing it, then resolve that it's better to keep quiet rather than try, only to get it wrong

c) think, "wow, this is complicated! I wonder if in a future world when disability is less stigmatized, we'll have come up with better terms?"

d) it's important to minimize the disability because it's nothing to be proud of

When I see a story about a service animal in the media, I:

a) put it on Facebook and forward it unread to people I know who might be having a bad day

b) read to determine if there's something in the story that I don't expect, then add my own comments

c) wonder how blind people clean up their dog's poop

d) dream of turning it into a script for tv

I believe the recipient of the compliment, "I never think of you as disabled," should be:

a) flattered

b) grateful

c) curious what such a statement reveals about how the flatterer does think about disability

d) sharing the compliment with the media

I believe finding a cure for disability is:

a) a sign of just how far science and medicine have come

b) a worthy use of resources, even though the goal seems hard to reach

c) an impossible pursuit because it assumes that everyone agrees on what it means to cure a disability

d) right around the corner

Part II: History and Culture

When I read that there's a campaign to put Helen Keller on a U.S. bill, I think:

a) Teacher would be happy but Helen might be turning in her grave

b) at last, a feel-good no-brainer for Congress!

c) it would be cool to have such an inspiring blind/deaf woman on American money!

d) who was Helen Keller again?

When I learned that disabled people protested against telethons, I thought:

a) why were they so ungrateful toward those only trying to help?

b) good for them - everyone should have joined in or at least have been more aware of how demeaning this was for people with disabilities!

c) why are disabled people always so angry?

d) all of the above

I believe the Americans with Disabilities Act (ADA) was mostly:

a) the result of disabled people's grassroots activism and careful coalition building

b) a politically-correct government trying to do the right thing

c) a boon for greedy, unscrupulous lawyers

d) none of the above

Watching the Academy Awards, I think:

a) why do so many nondisabled actors get Oscars for playing disabled people while there are still hardly any disabled actors featured in mainstream movies?

b) it's great that Hollywood finally gets it about disability by including disabled characters more often

c) I completely understand why the Oscar ceremony attendees in 1996 gave Christopher Reeve a long, standing ovation in this clip?

d) none of the above

Part III: Bodies and Minds

By engaging in simulation exercises such as being led around blind-folded or traveling in a wheelchair for an hour I would:

a) learn about having a disability first-hand, thereby expanding my sense of compassion and empathy for those less fortunate than me

b) be secretly grateful that I don't have a disability

c) gloss over bigger problems that disabled people face such as prejudice, limited resources, and Kafkaesque bureaucracies

d) be fully prepared to face disability if something terrible happened to me

When I meet someone I don't know in a wheelchair, I:

a) try to break the ice by casually asking what happened

b) talk to whoever is standing near them so as not to make them uncomfortable by looking down or staring at their wheelchair

c) try to find somewhere to sit nearby so we can chat

d) pat their head and ask if they'll take me for a ride

When I'm conversing with a Deaf person through an interpreter, I:

a) look at the interpreter because it's rude to ignore someone who is talking to me

b) look at the Deaf person while the interpreter is talking

c) share that I still remember how to sign "I love you!" from elementary school

d) all of the above

When I think of mental disabilities such as being bipolar or depressed, I:

a) realize it's important, but since I don't know anyone personally, it's an abstract problem that I only know about from tragedies on the news

b) hope they put in more rigorous background checks to make sure none of these people carry guns

c) wish our society was more open about these issues and dedicated more time, more resources, more frank conversations to them

d) none of the above

Most blind people:

a) live in total darkness, having been born that way

b) are complicated just like everybody else.

c) have been completely shut out from mainstream technology

d) are great masseurs because of their heightened sense of touch

15. Autistic people:

a) contribute to human neurodiversity, an emerging concept that requires more nuanced public conversations.

b) are primarily white men and boys who display an interest in mathematics, computers, and science.

c) are the victims of a rogue vaccine

d) realistically should live in institutions

Invisible disabilities are:

a) not real disabilities because they don't provoke the same overt prejudice as visible ones

b) define a segment of people with disabilities that need to be more fully integrated into disability communities

c) a phase that most people eventually pass through and go on to lead healthy, productive lives

d) invented by fakers who can afford to pay for a disability diagnosis to get extra time on exams in college classes

Part IV: Misconceptions

The best advice for learning about living with a particular disability can be found:

a) on websites that come up at the top of search results when typing in the name of the condition

b) through self-advocacy groups and organizations run by people who have lived with the disability

c) from a medical doctor

d) Wikipedia

Which is more likely to accompany disability?

a) poverty

b) an unemployment rate more than double that of nondisabled people

c) low expectations

d) all of the above

The best non-disabled ally for disability rights, is someone who:

a) quickly sizes up situations to anticipate what the disabled might need without having to ask any questions

b) knows they must talk loudly and slowly to be understood

c) reflects on the privileges they hold while joining in the struggle, all while taking the lead from people with disabilities.

d) dives in and feels good - there's so much work to be done that the desperate disability rights movement will welcome them and the important strengths they bring

Each year when I learn about Disability Awareness Days/Weeks/Months I think:

a) I wish they had better food at the events

b) they tell me all I need to know about people with disabilities

c) great start, but what about the rest of the year?

d) an online training course with the chance of winning a free tablet computer would probably be just as effective

You did it! Now click here for the answers so you can find out how you did...

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“I’m #PatientNoMore”: Installment 2

Visitor — Thu, 01 Oct 2015 19:23:34 +0000

The Longmore Institute’s “Patient No More” exhibit celebrates the accomplishments that the disability rights movement has achieved, but we are also eager to draw attention to the ongoing social justice work that is still being fought for. We ask attendees to the Patient No More exhibit to shout their chants into a bullhorn, recording the audio. Here’s the second batch of chants we’ve received…check back on our blog for more to come!

[embed]https://www.youtube.com/watch?v=JVmqUMG6RFY[/embed]

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"I'm #PatientNoMore": Installment 1

Visitor — Tue, 08 Sep 2015 21:19:01 +0000

The Longmore Institute's "Patient No More" exhibit celebrates the accomplishments that the disability rights movement has achieved, but we are also eager to draw attention to the ongoing social justice work that is still being fought for. We ask attendees to the Patient No More exhibit to shout their chants into a bullhorn, recording the audio. Here's the first batch of chants we've received...check back on our blog for more to come!

https://youtu.be/yk9h9Knr_S4

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Q&A WITH CATHY KUDLICK AND FRAN OSBORNE

Visitor — Mon, 13 Jul 2015 19:38:20 +0000

Cross-posted from Alice Wong's Disability Visibility Project

This is the first of a two-part interview. Here Cathy and Fran discuss what went into creating and making the “Patient No More: People with Disabilities Securing Civil Rights” exhibit, the challenges and opportunities.

For the first time, an exhibit on the landmark 504 sit in, “Patient No More: People with Disabilities Securing Civil Rights,” will be shown July 26-December 18, 2015 at the Ed Roberts Campus, above Ashby BART at 3075 Adeline in Berkeley. The Disability Visibility Project interviewed Cathy Kudlick and Fran Osborne of the Longmore Institute on Disability at San Francisco State University about this exhibit.

Where did the idea of the Patient No More come from? Why this subject and why now?

CJK: About ten years ago I attended an exhibit and event at the San Francisco Public Library sponsored by Community Works West where high school students interviewed aging Bay Area Civil Rights leaders. It was incredible because the kids were learning from the leaders by putting together a history exhibit – they did oral histories and mounted creative projects that reflected what they learned. The second these people started talking about their experiences, I began asking myself how I might do something similar about disability rights because I knew the Bay Area played a key role.

I’m a historian with a vision impairment. I’ve been working for about 20 years now to introduce disability history as a field of study. But I wanted desperately to get the fascinating Bay Area contributions to a broader disability rights struggle out to a bigger public, students, colleagues, the average person with and without disabilities on the streets. I know from all my work over the years how despite the fact that people think of History a passé, as an insult (“oh, she’s history!”), being aware that movements and identities have histories can be incredibly empowering – why do you think revolutions want to kill off the historians so they can start with a clean slate? Most people think of disability as a biological, physiological thing that happens to someone, something ahistorical, rather than an identity shaped by history, politics, economics, society, and culture.

FO: The Longmore Institute wanted to create a memorable exhibition to mark the 25^thanniversary of the passing of the ADA, without being a snoozefest of dry policy and explanations of the law. They wanted a project that would be exciting and powerful for the local community, as well as being relevant for a much wider audience. Our initial discussions began to tease out the most compelling stories and content, and we discussed how we could also fulfill the Longmore’s mission to generate new conversations about disability. Fairly soon into the process it became clear that the Section 504 sit-in had more than we needed to produce an exciting and resonant exhibition. What’s more, the protest was carried out for the most part by young people and may therefore have greater resonance online. We knew we could partner with many experts in the local community, that we could interview some of the unsung heroes of this amazing event, and that we might be able to find some photographs and other memorabilia if we kept digging. Cathy and Emily were also committed to experimenting with modes of access and building this thinking into the heart of the project.

Do you feel that the 504 sit in has been adequately documented and recognized in terms of its significance in civil rights history?

CJK: Definitely not. I think that’s about to change with the upcoming anniversary of the ADA and when the 504 protests mark 40 years in 2017. Our exhibit will hopefully help with that, but I’m also thinking of university-trained historians finally waking up to this as an exciting, important moment in US social movement history. It’s been surprising how few historians of the 1960s and 1970s know about this story, even though it directly touches on things they know and care about. Their ignorance isn’t deliberate or conscious – it’s just that they haven’t had much information and haven’t known to even look for it. Once this story sinks into history courses at the graduate and undergraduate level, it will start to make its way into textbooks and teaching K-12. It might be a generation or so before most Americans have a chance to learn about it, but it will happen.

FO: Many people we’ve talked to are not aware of the Section 504 protest and we are excited to think of it becoming a part of the curriculum for students and for educating the wider disability community of the Bay Area who may have no knowledge of the civil rights work of many people with disabilities. Activism may not be as much a part of everyday life as it seems to have been in 1977 but I think people of all ages will be able to relate to the power of a movement centered on a single issue, whether they have a disability or not. I think much more could be done to explore the many stories of Section 504. Exhibitions can only provide a tiny taste of what is available to serious researchers and there is definitely scope for more people to work on the material we came across.

Many people, especially non-historians, do not understand all the work that goes into a history exhibit. Please tell me what is involved in preparing this exhibit by the Longmore Institute staff?

CJK: I’ll let Fran tackle the main story. But what struck me most as a history professor that it was so much about boiling a complex, nuanced story down to fewer and fewer words. We scholars are trained to do exactly the opposite from what is required to create text for an exhibit: we take something relatively small and pour our hearts into writing about every detail. We expand, elaborate, highlight contradictions and confusions. For an exhibit the idea is to boil things down to their most raw essence without completely loosing the spirit and complexity of what we’re talking about. Writing this text is the hardest writing I’ve ever done. When you read the text, you might think: what’s the big deal? How hard is it to come up with 25 words about something? Trust me: it’s nearly impossible! I’m hoping that this skill will help my scholarly writing by making me aware of exactly what needs to be said and why.

FO: We begin with lots of questions. We try to gain an overview of the range of people who can provide first-hand testimony, as well as an idea of the ‘stuff’ we have access to. Usually there are many conflicting narratives and that is great for an exhibition because it demonstrates how varied truth can be. People with direct connections are very important for providing the kind of stories and information that hasn’t made it into the official record. Visitors also expect to find authentic original material to focus their attention on while they take everything in. The term ‘stuff’ is a useful catch all term for describing what the material content of the exhibition will be. Is there a collection of original memorabilia that we know is relevant? If so, whose is it and would they be willing to lend it to the exhibit? Are there photographs, or films, newspaper reports or audio recordings? Have they been seen before? What do the major collecting institutions have? What design and conservation limitations do we have? Is any of the material fragile? Where do we start and of course, how much money do we have? Often, exhibitions involve a good deal of detective work to uncover the most relevant or important objects and material and at the same time, the team will be asking many, many questions about the intellectual and factual content. What do the existing sources say and why do they contradict each other? What are the major themes and how should we present this information? What do we want to leave people with? What interactive elements are appropriate and how will they reinforce the content?

Once the range of material and ideas are clear and assembled, the difficult process of designing, writing and implementing the exhibition begins. After developing the overall ‘concept’ each element is fleshed out and any further research is done. Due diligence in making sure that everything is accurate (and has a reliable source) is crucial in maintaining the public trust with what is presented. More questions ensue: who are those people in that photograph? Is that the best one we have of that story? Where was it taken? What should the credit be? Do we have copyright clearance and are their high-res digital files? As you can imagine, when there are many moving parts, this process can take a long time and as the design and content progresses, things have to be culled and taken out until what remains has earned its place. Every time one element is changed it has a knock-on effect on everything else. Once the main elements are in place, the team continues to refine and finalize the text and all visual, film and audio material and consult with advisors and focus groups to test things out. More revisions are done. Slowly the exhibition gets clearer and clearer. We were lucky to have a relatively long time frame to create the exhibition and it allowed for plenty of conversation and debate that can be quite challenging if time is limited but ultimately creates a better result for the public.

The process involves juggling many things at the same time and is a bit like slowly building a jigsaw puzzle. While some parts are very clear, others are still missing or elusive, and everyone has their own approach. Some people begin with the corners and edges, while others just dive in. The whole team is working together so that the final puzzle will appear in all its glory.

What are some of the challenges you faced in curating, planning and designing this exhibit?

CJK: There were a ton of moving pieces, conceptually and literally. We wanted to honor the participants and the legacy. But we didn’t want it to be a white-washed feel good story because there were tensions and omissions. It was a racially-diverse movement but the leadership was almost exclusively white women in wheelchairs. How could we honor the amazing thing they made happen (in no small part by building bridges to local communities of color such as the Black Panther Party) while honoring the feelings of some participants of color that their story hasn’t really been part of the 504 and disability rights stories? And how to acknowledge the divides among various impairment groups without erasing the awesome collaboration, connections, and esprit de corps that brought everyone together and created a more-or-less unified disability rights movement that helped bring about the ADA?

Another challenging piece was our decision early on to build in multiple forms of access at every stage.

FO: This really is the most complex exhibition project I’ve ever known and Patient No More has required a different level of attention for all kinds of reasons. We have been re-visiting an event that had its own mythology and which was clearly a life-changing event for many people who went on to be activists and campaigners. How would we honor those experiences and involve new audiences? We have been consulting with the local disability community, asking for feedback and prototyping as much as is practical with our resources and capacity, as well as consulting with museum experts far and wide. Although our budget is fixed, the scope of the project is ambitious and meant also generating our own content through the 40 video interviews, which was quite a project in itself. Cathy mentions above the issues we encountered in working on the deeper aspects of the protest and they continue to come up in discussions. Other challenges were practical and frustrating. Initially we couldn’t find some of the people we knew we wanted to interview. We’d hear reports of them but then the trail would go cold. We would persist but it was not easy. Sometimes phone numbers might be wrong or the person may have left the area. Sometimes people were willing to meet but didn’t want to be interviewed on camera. We were also told that journalist Evan White who had covered the protest for Channel 7 might have passed away. We suspected he was still around and eventually located him and interviewed him at the ERC but we collectively worried a great deal about getting as representative range of people as possible, especially those who had never had their opportunity to tell their story. The Longmore team did a great job of coordinating all the interviews but then of course, the raw footage of the interviews has to be transcribed and after a clear plan, has to be edited into short meaningful films, with captions and then … audio description … which means there must be delicate editing of timing. Every element had to be thought of in access terms. When there is text, we have to consider the vocabulary and reading level. When there are images, we have to consider how a blind visitor or visitor with a vision impairment will have an equivalent experience? One of the greatest challenges for the designers is that the ERC has several entrances and exits and a linear journey around the exhibition would not work. In addition, the structures have to be capable of being moved out of the space for ERC events. The designers faced considerable challenges in creating structures that would fit through doorways on the basement level of the ERC, would still fulfill ADA requirements, have power for video monitors showing interviews, and incorporate Braille as part of the design. Space was always an issue as you may imagine. I’m hesitant to say more but I hope we’ve conveyed just how complex this exhibition is.

How did you engage with the disability community in terms of outreach and participation in the Patient No More?

CJK: We’ve had many formal and informal conversations throughout the process. We’ve solicited feedback on all of the text and oral history interviews. We invited people from the community to attend access “charettes” (feedback sessions) about the interactive elements. Our design team camped out at the Ed Roberts Campus for a day and approached people to ask them to interact with everything from text size to buttons on the tv screen.

FO: We learned so much from these early meetings and testing sessions and continue to consult and incorporate feedback from the community. We tested our interactive concepts at the Disability Pride march and festival organized by the Silicon Valley Independent Living Center in 2014. We had a great time telling people about the exhibit and asking them to test out our interactive ideas. People learn so much more when they can engage in a personal and direct way. Road-testing always makes a big difference. I wish we had the resources and time to do more.

Early on we also wanted to develop close working relationships with those who were there, and contacted as many people as we could who had been in the protest. Even now, new people are coming forward to tell us of their involvement, or relay their memories of the protest. Everyone had a lead for someone else or a newspaper clipping or a story that we had never heard before. Ken Stein has a great series of recordings and pointed us to other collections in the Bancroft and as time went on we discovered other protesters who had treasures they were willing to lend. HolLynn D’Lil had a huge archive of photographs she had taken in the San Francisco protest and from the group visit to Washington. She also had her own archive of notebooks and copies of letters and flyers and press releases that gave us a huge boost in understanding the protest directly from original material. The more people we talked to the better our sense of the protest became and the more engaged we hope the community is. As Cathy says, we had design charrettes early on and have continued to consult with individuals and interested groups. Cathy and Emily really are experts in access and their contribution is huge. As a sighted person it is very easy for me to forget how biased museum exhibitions are in favor of the visual. We had to be mindful that not every person with a visual impairment may read Braille or have the funds for a smart phone. Most recently we have been working with the access team at the Lighthouse For The Blind in SF who are providing Braille for the exhibit. Often issues and problems get solved in these small group meetings in ways that are so satisfying. We may still make mistakes but we are doing everything we can to incorporate access in a dynamic and inclusive way. I’ve also become quite aware of the need to expand the understanding of 504 and how it protects peoples’ rights. It’s almost as if a new round of 504 and ADA trainings are needed to inform the younger generations of people with disabilities.

For more information on Patient No More, open July 26, 2015, Berkeley, CA:

PatientNoMore.org

Catherine J. Kudlick – Director

After more than two decades at the University of California at Davis, Catherine Kudlick was delighted to join San Francisco State as Professor of History in Fall 2012 to assume directorship of the Paul K. Longmore Institute on Disability.

Fran Osborne – Curator and Graphic Designer

Fran Osborne has a BA (Hons) in Typography & Graphic Communication from Reading University in England and an MA in Museum Studies from SF State University. She has a special interest in bi or multilingual interpretation in museums and other cultural facilities and has international experience in Arabic speaking countries. Based in California, she is currently volunteering at SFMoMA and SFOpera. Recently, she was the curator of DIS/PLAY: A Disability Take-Over Show By Artists With, and Without, an exhibit featured at SOMArts in San Francisco.

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Disability Visibility Project

Why Disability History Matters

Visitor — Wed, 23 Jul 2014 17:43:14 +0000

By: Guest Blogger Alice Wong, Project Coordinator, Disability Visibility Project

Reposted from the Disability Visibility Project and Disability.gov blog

I was 16 when President George H.W. Bush signed the Americans with Disabilities Act (ADA) on July 26, 1990. I can’t remember if I had any particular awareness or excitement about the passage of this landmark piece of legislation. At that time, I had little knowledge of the independent living movement or disability history. In the prehistoric era before social media, I was unconnected to other people with disabilities like myself—it took me a while to become politicized and find ‘my crip tribe.’

As many organizations plan national and local events celebrating the upcoming 25^th anniversary of the ADA, I wondered what I could do to highlight the current zeitgeist of the disability experience while honoring the past.

I recently launched the Disability Visibility Project: A Community Partnership with StoryCorps. The project is a year-long grassroots campaign that encourages people with disabilities to record their stories at StoryCorps in celebration of the upcoming 25th anniversary of the ADA in 2015. By tagging their StoryCorps recordings as part of the Disability Visibility Project, participants will have their stories archived in the American Folklife Center at the Library of Congress. Their stories will be searchable by the name of the project.

It’s been a pretty exciting experience so far. The response from the Bay Area disability community has been tremendous. We also have more than 20 media partners comprised of individuals and organizations in the disability community that are helping us with outreach and publicity.

With the 24^th anniversary of the ADA coming this Saturday, I had the opportunity to interview one of our media partners, Catherine Kudlick, professor of history and director of the Paul K. Longmore Institute on Disability at San Francisco State University.

Q: Why are you interested in participating in the Disability Visibility Project?

A: I’m a big fan of StoryCorps, but I think the disability perspective, especially one grounded in political and cultural awareness needs greater visibility, both for all people with disabilities and for the general public.

Q: Who do you plan to record your story with? What are some reasons you are having a conversation with this person?

A: Georgina Kleege, a writer and English professor at UC Berkeley and I are both “imperfectly blind” academics, so we share similar experiences of being in this funny middle place that not many people acknowledge; for most people, if you call yourself blind you must see nothing or else you’ve got to be a sighted person. Most people with vision impairments are somewhere between these two places, so Georgina and I have built up a friendship that explores this. It’s really important to talk both with other disabled people, but also with someone who shares a similar disability.

Q: Why is disability history important to all Americans, but Americans with disabilities in particular?

A: History gives us the tools to think about us—whoever that us is—as being part of something bigger; we have a past, which means that we have a present and a future. Because disability has been ignored for so long, it’s important for the general public and people with disabilities to learn that it played an important part, not just because of a few important people who defined a movement, but also for how we think about things like productive labor, our healthcare system, the impact of war and how our nation establishes various hierarchies. By understanding how disabled people are defined by these experiences and often helped define them is tremendously empowering both individually and collectively.

Q: As a historian, what are the top three books on disability history people should read in light of the 24th anniversary of the ADA?

A: Kim Nielsen’s A Disability History of the United States. Paul Longmore’s Why I Burned My Book and Other Essays on Disability. Joseph Shapiro’s No Pity remains a classic published in the early 1990s, but I suggest it because it still offers a broad context for people who don’t know much about disability in the U.S. and as an NPR journalist, Shapiro tells good stories. I know that Lennard Davis is completing a book on the history of the ADA, but I have not seen it.

History gives us a sense of who we are and where we are going. Disability history is so much more than the ‘big names’ familiar to most such as Helen Keller, FDR, Ed Roberts, Judith Heumann and Justin Dart. Organizations like StoryCorps give everyone the opportunity to document their stories, preserving history from the ground up.

The goal of the Disability Visibility Project is simple: “Recording disability history, one story at a time.” Happy 24^th Anniversary, ADA!

Alice Wong is a staff research associate at the Community Living Policy Center, a Rehabilitation Research and Training Center funded by the National Institute on Disability and Rehabilitation Research and the Administration for Community Living. She is also a council member on the National Council on Disability, an independent federal agency. This guest blog post reflects her views alone. You can find her on Twitter: @SFdirewolf

Additional information for the Disability Visibility Project:

Website: http://disabilityvisibilityproject.com
Facebook: https://www.facebook.com/groups/356870067786565/
Twitter: https://twitter.com/DisVisibility

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Disability Visibility Project

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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Paul K. Longmore Institute on Disability - Longmore Institute

Longmore Institute Seeking Disability Studies WikiPedian

New Orleans Students Sell Brownies to See "Patient No More"

Gazing into The Eye of Power

The "Patient No More" Mural

20-Question Quiz to Determine Your Disability Literacy

TAKE THE LONGMORE INSTITUTE'S 20-QUESTION QUIZ TO DETERMINE YOUR DISABILITY LITERACY

Part I: Feelings

Which of the following do you find most inspiring?

When I hear someone being corrected for not using person-first language (i.e., "a person with autism," "a person with a mobility impairment," "a person who is blind," I:

When I see a story about a service animal in the media, I:

I believe the recipient of the compliment, "I never think of you as disabled," should be:

I believe finding a cure for disability is:

Part II: History and Culture

When I read that there's a campaign to put Helen Keller on a U.S. bill, I think:

When I learned that disabled people protested against telethons, I thought:

I believe the Americans with Disabilities Act (ADA) was mostly:

Watching the Academy Awards, I think:

Part III: Bodies and Minds

By engaging in simulation exercises such as being led around blind-folded or traveling in a wheelchair for an hour I would:

When I meet someone I don't know in a wheelchair, I:

When I'm conversing with a Deaf person through an interpreter, I:

When I think of mental disabilities such as being bipolar or depressed, I:

Most blind people:

15. Autistic people:

Invisible disabilities are:

Part IV: Misconceptions

The best advice for learning about living with a particular disability can be found:

Which is more likely to accompany disability?

The best non-disabled ally for disability rights, is someone who:

Each year when I learn about Disability Awareness Days/Weeks/Months I think:

“I’m #PatientNoMore”: Installment 2

"I'm #PatientNoMore": Installment 1

Q&A WITH CATHY KUDLICK AND FRAN OSBORNE

Why Disability History Matters

Can Pirates and Mermaids Be Crusaders for Disability Rights?