Paul K. Longmore Institute on Disability - Disability Visibility Project

Alice Wong Longmore Lecture with Video & Transcript: "Storytelling as Activism: The Politics of Disability Visibility"

Visitor — Mon, 16 Apr 2018 22:29:39 +0000

On April 3, 2018, we celebrated the fifth annual Longmore Lecture in Disability Studies with Alice Wong, founder/director of the Disability Visibility Project and co-partner of #CriptheVote. Interviewed by Longmore Institute Director Catherine Kudlick, Wong explored disability justice, savvy strategies for social media, intersectionality, and political engagement through storytelling. Wong, normally the interviewer herself in her work, opened up, "“As a person born with a disability, I’ve always been an activist, just by existing in a nondisabled world! I was an accidental activist. I was timid calling myself an activist with a capital A...” Fortunately, at the end of the lecture, she shared, "This was a much more pleasurable experience than I thought it'd be!" Missed this great event or joined us but are eager to take it again? Read the recap of all the live tweets on Wakelet here, access the transcript here, and watch the video now!(Includes ASL & captioning): [youtube https://www.youtube.com/watch?v=rPwH6UTjeKE]

Tags:

#Cripthevote

Alice Wong

Disability Visibility Project

Longmore Lecture

Nicole Bohn

Paul Longmore

Good News: You Can View the Longmore Lecture with Alice Wong Remotely!

Visitor — Fri, 23 Mar 2018 22:59:27 +0000

Join us! The 2018 Annual Paul K. Longmore Lecture on Disability Studies will feature an interview with Alice Wong on "Storytelling as Activism: The Politics of Disability Visibility."
Tuesday, April 3, 2018 - 5:00pm-7:00pm (includes reception)
San Francisco State University, J. Paul Leonard Library, Room 121

You won't want to miss this chance to learn more about Alice Wong, Founder/Director of the Disability Visibility Project and co-partner of #CriptheVote. Together we will explore disability justice, savvy strategies for social media, intersectionality, and political engagement through storytelling. This event is free and open to the public, and light refreshments will be served. RSVP encouraged to pklinst@sfsu.edu or (415) 405-3528. Please refrain from wearing scented products, so that people with chemical sensitivities can join us. ASL and open captioning will be provided.

CAN'T JOIN US IN PERSON

BUT DON'T WANT TO MISS OUT ON THE FUN?

We're excited to announce that for the first time, we'll be streaming the Longmore Lecture! Register now: https://sfsu.zoom.us/webinar/register/WN_tZ6NrhItShCA5VhCKTcRQw After registering, you will receive a confirmation email containing information about joining the stream. We recommend you download Zoom in advance if the platform is new to you. Please note, if you are blind and use a screen reader, we recommend that you use the dial-in information to access the live-stream audio rather than the zoom computer link, as it may not play nicely with your screen reader unfortunately. (US: +1 669 900 6833 or +1 646 558 8656 Webinar ID: 761 651 225) If you are Deaf or hard of hearing, please press the CC button once you open the Zoom platform to access the live captioning stream. And feel free to tweet your thoughts/questions with #LongmoreLecture / @LongmoreInst / @DisVisibility

*** This year's Longmore Lecture was made possible thanks to several donors who gave in honor of Nicole Bohn's many years of service to San Francisco State University.

Tags:

#Cripthevote

Alice Wong

disability justice

Disability Visibility Project

Longmore Lecture

social media

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.

Tags:

Disability Visibility Project

Friends with Words for 2015

Visitor — Mon, 22 Dec 2014 18:59:40 +0000

By: Catherine Kudlick

What better way to end 2014 than to celebrate friendship? Thanks to the Disability Visibility Project, this past summer and fall scores of people from the SF Bay Area headed to the cozy StoryCorps booth at the San Francisco Public Library to record conversations with friends and loved ones. Assistant Director Emily Beitiks interviewed her longtime family friend Stanley Yarnell, who discussed being a physician as he relied less and less on vision, while I interviewed writer and Berkeley English professor Georgina Kleege about our great friendship built in part upon the idea that we call ourselves "imperfectly blind" because we see more than sighted people think we should. Listen to the interviews or download the transcripts compiled by our dedicated interns.

There’s something profound at the root of these interviews, something daring, even subversive. First, disabled people get to tell the stories rather than have the stories told about us. This makes us experts, especially Stanley who talks openly about what it was like to be a practicing physician with a vision impairment, pushing the boundaries of credulity for many. Yet he also challenges the rules and raises questions such as what is medical care? What do we learn from our doctors about vulnerability, strength, and ourselves, whoever we are? Stanley's experiences wearing two hats that too often feel mutually exclusive - that of the physician and disabled person - is part of what first drew Emily to Stanley (and why she pestered him repeatedly until he agreed to record his stories for the Disability Visibility Project).

Second, the interviews let the cat out of the bag: disabled people have friends, even and especially disabled friends who bring great joy and mirth to everything. In a world that never portrays more than one blind person anywhere except for special schools, Georgina and I have spent many hours, cooking, walking, gossiping, sharing stories about the odd overheard comment, swapping tips about the latest accessible apps or latest book we're reading, coming up with new teaching strategies, always leaving with more questions than answers. Just like for Emily and Stanley, disability was what kindled and sustained that inexplicable spark of friendship – a striking contrast with those Hollywood depictions of disability that tear people apart or make the bonding seem creepy!

Just maybe 2015 will be the year of the first mainstream disability buddy film, one played by actual disabled people who can laugh about that ridiculous thing that happened on the bus or have discovered something wonderful about their humanity by helping a struggling nondisabled person. Or even better still, they could just be random friends in a bigger story that wasn’t only about disability.

Let me offer up a new word for 2015, "disabilityship." In my special dictionary it looks like this: disabilityship [dis′ə bil′ə tē′s̸hip′]

noun referring to a deep connection that two or more people have with one another thanks to disability.
Alt. meaning: an accessible, crip-friendly spacecraft.

Let every dictionary list this blog post as the origin of a word that finally exists to show the world something truly wonderful about disability.

Tags:

Catherine Kudlick

disability

Disability Visibility Project

Georgina Kleege

San Francisco Public Library

Uncategorized

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

Tags:

Disability Visibility Project