Paul K. Longmore Institute on Disability - guest post

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

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

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

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

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

But I am #sick.

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

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

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

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

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

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

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

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

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

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Ankylosing Spondylitis

chronic illness

disability

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Superfest: International Disability Film Festival

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The Paul K Longmore Papers

Visitor — Wed, 24 Feb 2016 00:51:56 +0000

By: Meredith Eliassen

Meredith Eliassen serves as the Curator of the Frank V. de Bellis Collection University Archives and Historic Collections. She stewards the collection of Paul's personal and professional papers, which offers insight into his research and life. She spoke about the collection at the launch of Telethons hosted at the SFSU Special Collections and Archives.

The Paul K. Longmore Papers have been open for about two years, and they have drawn international scholars to the University Archives. They contain his papers related to research and teaching, and researchers have particularly been interested in material related to the League of the Physically Handicapped active during the Great Depression. Longmore was not just a pioneering historian focused on disability studies and bioethics; he was a noted scholar on the colonial period of American history and George Washington.

Archivist and former student of Paul Longmore: Meredith Eliassen

I got to know Paul as one of his students. I grew up in a family where disability was part of the conversation, so after he came to San Francisco State in 1992, I sought him out. In putting together the display in the back of the room, I was also struck by the communications from his students. I was wowed contemplating the profound impact that his teaching and mentoring had on my own career. Paul recruited me to get materials from our Archer Collection into the Disability History Museum... this became my first experience digitizing our collections. I realized that the projects related to my work here that I have been most proud of came right out of his teaching... in particular, a guide I compiled for our KPIX AIDS Collection in the Television Archive. When I described the project to Paul and told him my doubts about doing the work (I am not a medical historian), he responded: “Meredith, if you don’t do it, who will.” And that was enough for me.

The Longmore Papers also demonstrate how scholars with disabilities use this library. Longmore really worked our Inter-library Loan Department to get documents; what we have here in his archive, we don’t hold copyright to. However, what we have here is Longmore’s fantastically strategic logic that never wasted time or effort. I continue to partner with Inter-library loan to deliver access to researchers in other regions who need access to this material.

Longmore was an activist and he taught activism. We have a photograph of him participating in a book-burning protest. Longmore started teaching his “Disabilities in America” class as part of the History 490 series “Topics in American History.”

However, Longmore did not just teach students about history, he taught students about their own life and times. We reviewed his VHS recordings of telethons and discussed what they really meant.

As Kate (archivist of the Longmore Papers) mentioned, Longmore recorded telethons taking copious notes that were transcribed. Longmore taught students to engage with and interpret moving image primary sources with a disability lens utilizing multiple perspectives.

Longmore was an ardent critic of popular culture, fearless and unrelenting in confronting networks, editors, (you name it) when necessary. He introducing his students to all kinds of media related to disability in order to teach critical thinking skills.

In 2006, Longmore received the prestigious California State University Wang Family Excellence Award in recognition for his pioneering work in the field of disability students and exemplary work as a teacher and mentor.

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Some Thoughts on Paul's Legacy

Visitor — Wed, 17 Feb 2016 19:37:15 +0000

Trevor Getz is a Professor in the SFSU History Department, member of the Longmore Institute Advisory Council, and friend and colleague of Paul Longmore. At the book launch party for Paul Longmore's magnum opus Telethons: Spectacle, Disability, and the Business of Charity, he shared some thoughts on Paul's impact and legacy, both as an individual and scholar.

By: Trevor Getz

Paul Longmore was, in fact, my very good friend. But I’ll admit we didn’t often talk about telethons.

Oh, don’t get me wrong, he’d tell me sometimes about his next book – this one in front of you -- and about his feelings about MDA and Jerry Lewis. But Paul was a fascinating and unorthodox scholar, and his work took him many different places. He was also an amazingly patient mentor -- once he knew that I had an ego that could match his, -- and I learned a lot from him. Fellow historian and close friend Trevor Getz shares some of Paul's antics.

He taught me about identity, and especially about the nation and how nationalism worked. I quickly found out that asking him to read a chapter about nation-building in West Africa meant that I would be barraged with two million suggestions about readings I should have done and concepts I had never heard of before.

He taught me about culture, and the way it operated. Not in theory, but in actuality, through observable events and shifting attitudes, both across the country and on campus, and on the TV….

He taught me about power. Paul could exert an amazing amount of ‘soft’ power just by showing up in some VPs office and chatting with the administrative assistants, or stopping a Dean to chat on the quad, and

He taught me about money, both in starting a departmental ‘development’ committee when most of us were allergic to the idea, and in ridiculing the stupid laws that restricted his ability to profit from his scholarship, a righteous anger that eventually became the act of rebellion in which he burned his book.

In a way, all of these matters are in the book that’s in front of you. What’s amazing is the way that it weaves together culture, identity, the operation of power, and the corrupting flows of money into a story that – ultimately – is about people and their subjugation to a system that claimed to be about them, but that was really about their objectification. In the end, that’s what Paul ‘s scholarship was about – people, the lives they lived, the societies they created, the experiences they felt.

It’s amazing, how many things Paul still teaches me, even now that he is no longer with us.

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Patron-No-More

Visitor — Tue, 15 Dec 2015 23:28:07 +0000

My transition from a 5-year-old museum fan to exhibit technical consultant.

By: Guest Blogger Tim Kerbavaz

For the past two years, I’ve been serving as an advocate for electronic accessibility as the chair of the UC Davis Captioning Committee. It was through this committee in 2014 that a colleague approached me with a request: could I help the Longmore Institute at SF State design and build a multimedia exhibit about disability activism? I couldn’t say no. Being able to combine my childhood dream of exhibit design combined with my passions for AV technology and cutting edge accessibility was too exciting of a project to turn down.

When I was 5 years old, I walked into Berkeley, California’s Lawrence Hall of Science, looked at the animatronic dinosaurs, and stated matter-of-factly, “I want to work in the back [of the museum]," “I want to build the exhibits.”

It’s been a few years since I was 5, but that childhood dream has stuck with me.

I was able to get a taste of the museum industry during a 6-year stint as a science educator at the Chabot Space & Science Center in Oakland, but my primary career has been providing Audio Visual Support for events, both at UC Davis and through my own company -- I joke that my job is to make people louder. At Chabot, I had done some content design, but had not done any exhibit physical design or construction. With the Patient No More project, I was definitely in new territory.

The Longmore Institute exhibit team’s vision was to use iPads for video playback. I was excited to try out some cool technology and find a way to use an external button to trigger an iPad. This physical button was critical - we had to have a physical interface that was easy for anyone to use, regardless of physical mobility, height, or dexterity. Touchscreens would not cut it, and we had to mount the button at an ADA compliant height, so it couldn’t be attached to the display.

I poured over vendor sites, forums, blogs, and product manuals, trying to find the perfect interface for a tactile iPad button.

Alas, it was not to be - iPads are not easy to control with an external switch, and that button was a key accessibility tool to allow wheelchair riders or patrons with short stature to activate the players. We needed a new solution.

I called some trusted partners in the AV integration market, got some product samples, and got a parts list together, settling on a solid state video player with contact closure switch inputs and easy configuration and customization.

After playing with samples, testing hardware, and spreading parts all over my house, I settled on a digital signage player from BrightSign with hardware GPIO inputs and an easy to configure software interface. I chose basic Dell monitors for low cost and general availability - If we had any problems I knew I could get a spare on short notice. Add a small amplifier, some installation-grade surface mount speakers, a push button, and some cables, and I had a full system picked out.

One of the biggest challenges I faced with this whole project is that I live in Sacramento, the exhibit team works in San Francisco, and the exhibit is in Berkeley at the stunning Ed Roberts Campus. We did a lot of conference calling and I sent a lot of FedEx shipments, but I also did a lot of driving - To SF, to Berkeley, and back to SF. Because I was so far away, I had trouble imagining the exhibit as designed fitting in the space. I had seen bits and pieces, and I knew that all fit together on paper, but It was hard to visualize the completed project in the venue.

On installation day, I came armed with electric drills, spare parts, extra hardware, extension cords, and a stack of laptops. I walked into the space as the exhibit panels were being wheeled into place. It was the moment of truth, and it all worked flawlessly. The artwork was gorgeous, the videos played complete with captions and audio description, and all the screws fit where they were supposed to.

It was a long road to get to an exhibit, but when we did the final install it all came together perfectly. I had the privilege to work with a really talented team, both at the Longmoore Institute and at the exhibit’s fabricator, Gizmo Art Productions. By combining a passion for accessible technology with my experience in Audio-Visual systems, I was able to fulfill a childhood dream and help make a collective vision for a living history project come to fruition.

As a person with a disability, I’m personally committed to ensuring that the content and events I produce are accessible to all audiences, but I only have my own perspectives on what that entails. Working on this project, with so many moving pieces, so many considerations, and so much constructive feedback from the community at the Ed Roberts Campus has allowed me to better understand the myriad of unique perspectives and needs of people with a wide variety of disabilities, and has given me better perspectives on how to work within communities to ensure all their needs are met.

I look forward to continuing to work with the Longmore Institute and with the Ed Roberts Campus to help make AV technology and event technology accessible for all members of our community.

Patient no More is open until January 15, 2016 at the Ed Roberts Campus, 3075 Adeline St in Berkeley, CA. More information about this exhibit is available at http://longmoreinstitute.sfsu.edu/patient-no-more

Tim Kerbavaz is the founder of Talon Entertainment, a Davis, CA based event technical solutions provider. More information about Talon and Tim’s other work can be found at www.talonent.com

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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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Fighting Shame with History

Visitor — Tue, 02 Sep 2014 22:37:36 +0000

By: Katie Murphy

Getting ready to start a new semester is a bit different for me. Like everyone else, I have to buy my books and readjust to a less nocturnal schedule. But, as a disabled student, I have the added preparation of having to work through a lifetime of internalized ableism at the beginning of each semester. You see, at the start of each term, I have to meet with my professors and explain to them my accommodations. And no matter how awesome and with it my professors are, requesting accommodations makes me a wee bit anxious. Before I even walk into office hours, I have to go to battle with all the awful ideas about disability that I’ve been exposed to since birth.

I have to engage in a little mental boxing match with self-doubt: “Do I really even need those accommodations? I could get by without them, right? I did before.” And guilt: “I’m wasting my professor’s time. They’re going to hate me. I’m such an inconvenience.” And shame: “A good student and a stronger person wouldn’t need all this stuff. I guess I don’t deserve any praise I get from my family about going to grad school. I guess I’ll have to give my Uncle Jimmy back that sweet card he sent me when I graduated from Berkeley. Oh my god, where did I put that card? Where did I put that card?”

And I’m guessing a lot of other disabled students go through the same thing. (Minus the card from my Uncle Jimmy part.)

But we don’t have to. We really, really don’t have to.

And I think most of us know this. Intellectually, I know that accommodations are my right and I’m not getting some unfair advantage over everyone else. My accomplishments are my own, and I don’t need to torture myself by going without accommodations.

And yet...

Pure logic isn’t always the best tool for fighting feelings like self-doubt, guilt, or shame. Disabled people grow up learning to hate themselves, to hate their disability, because the world we live in hates disability for no logical reason. And sometimes the best way to fight that kind of illogic is with more illogic.

If I can’t completely get rid of that part of me that demands I feel bad for being a disabled student, I can at least trick it. “Hey ‘Part of Me That Demands I Feel Bad for Being a Disabled Student’! I don’t owe you any feel bads. Somebody else already felt bad on my behalf. My bill is paid. My debt is settled. You can stop leaving harassing voicemails.”

You see, in 1977, years before I was born, 150 disabled people occupied the old federal building in San Francisco to force the government to enact the first civil rights legislation for disabled people in US history. As I’ve learned going over interviews with some of the occupiers for the Longmore Institute's Patient No More exhibit, one of the major motivations for occupying the building was the right for people with disabilities to get an education. Some of the sit-in participants went to segregated schools—separate schools for disabled children. Some were lucky enough to go to one of the few universities that admitted disabled students. They all sat-in so I could go to school and have the accommodations I need.

Just think: For twenty-six days, around 150 disabled people lived in a single floor of an office building. Only a handful were aware that they would be occupying the building at all, let alone for a month, so most participants didn’t have any bedding or a change of clothes with them. Many participants required attendant care for eating, using the bathroom, or preventing pressure sores. All of that care had to be improvised inside the building with everyone helping wherever and whoever they could. Some protesters had medicines that needed refrigeration, so a makeshift fridge was created with a window air conditioner and a plastic sheet. When the phone lines were cut, they communicated with the outside world by signing to people picketing in front of the building. Their struggle was supported by the Black Panthers, who made the protesters (including Black Panther Bradly Lomax and his attendant Chuck Jackson) two hot meals a day. When a bomb threat was called in, they didn’t leave the building. The protesters were in such close quarters with such limited opportunities for personal hygiene that many of them got crabs.

Crabs.

On top of all that, the building was completely inaccessible. The protestors were fighting for the implementation of the Section 504 of the Rehabilitation Act of 1973, which made it illegal for entities receiving federal funding to discriminate on the basis of disability. Under Section 504, the very building the protestors were occupying would have to be made accessible to disabled people. Yet they stayed in this inaccessible building for nearly a month to demonstrate the need for disability rights legislation, showing the nation the strength of the disability community and its allies.

If you, like me, ever find yourself feeling guilty or ashamed about being a disabled student, doubting whether you really need or deserve accommodations, I encourage you to think back to the 504 protests. If you ever feel society tugging at you to “get by” without accommodations, “toughen up,” “suck it up,” “stick it out,” because “the whole world doesn’t cater to you,” remember that you are part of a community that has spent enough time living in an inaccessible world. If you feel tempted to do an ableist society’s work by torturing yourself for being disabled, remember that over a hundred protestors (and an infestation of crabs) stayed in a building for nearly a month without the comforts of home or any accommodations or accessible structures. Remember that all the discomfort and indignities they faced as protestors were so that you wouldn’t have to go through the same thing. You’re relieved of any duty to feel guilty or ashamed about being a disabled student.

At the same time, you’re not completely off the hook. Remember that you have a legacy to uphold—a legacy that was forged in part at the 504 protests. Remember to honor the qualities that made the 504 sit-in so successful and such a life-changing experience for those involved: community pride, collaboration, and commitment to education.

Remember that the 504 sit-in did not occur so that one disabled person could scale the social ladder while the rest of the disability community remained on the bottom rung. The 504 sit-in was an effort by the disability community for the disability community. Remember that when you next come across fellow students who might be eligible for accommodations but are unfamiliar with the disability services offered by your school. Remember that you have knowledge worth sharing about disability services when a friend discloses that they are struggling due to a disability or medical condition. Remember to honor the confidentiality of anyone who confides in you.

Remember the invaluable work performed by the Black Panthers, the Grey Panthers, the Butterfly Brigade, and the International Association of Machinists. Remember that their support, supplies, and expertise enabled the sit-in to last. Disabled students gained the right to an education in part because of the different social justice groups that collaborated with the protestors. Remember that when students aren’t getting a fair shake at an education for reasons other than disability. Remember the power of collaboration when you come across women facing isolation in STEM fields, working class students going into debt to afford textbooks, trans students being referred to by the wrong pronouns, or students of color having their names mispronounced or mocked. Remember that as someone who has benefitted from different groups coming together to support disability rights you have the responsibility to pay it forward and support the right to an education for everyone.

If you can do all that without getting crabs? That means you’re one step ahead of the 504 protestors.

Katie Murphy is a graduate student in Women and Gender Studies at San Francisco State University and student assistant at the Longmore Institute. She also runs Space Crip, a blog about disability in sci-fi/fantasy.

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Quilts for Starting Conversations

Visitor — Tue, 05 Aug 2014 21:31:06 +0000

By: Guest Blogger Corbett O'Toole

On August 8, 2012 I received a wonderful email inviting me to create a quilt for the Paul K. Longmore Institute on Disability at San Francisco State University. This honor brought with it many questions. What purpose would the quilt serve? Where would it hang? What focus? Who would be the audience?

The quilt project is intrinsically tied to Paul. His unexpected death created the reason SFSU permanently established the Institute and named it for him. Many of us involved in the quilt had strong personal ties to Paul. Should the quilt be a memorial to him? Should it include his vast collection of disability political t-shirts?

The quilt discussions became an opportunity for us to discuss our fondest memories of Paul and to explore which aspects of his legacy we wanted to immortalize in the quilt. Although Paul died four years ago, his former students still attend SFSU and his mark on the campus is strong. Paul’s international mark on the field of disability history is rooted in the classrooms at SFSU where he led many explorations of how disability and history intersect. His answer: everywhere. SFSU also hosted several important milestones in Disability Studies: 2000 NEH Institute on Disability Studies; 2000 Symposium on Disability, Sexuality and Culture; 2002 Queer Disability Conference; and 2008 Disability History Conference.

After many discussions with the Institute Director, Catherine Kudlick, and Eugene Chelberg, Associate Vice President for Student Affairs, an initial direction emerged. The quilt would hang in the Institute’s library and conference room with a direct sightline from the entrance of the Institute. The large surface, 4 by 6 feet, provided an open canvas. Paul’s deep interests in disability history, activism and culture emerged as the guiding representational themes.

In addition to capturing Paul’s interests, the quilt needed to support the Institute’s mission to create opportunities for unexpected conversations, for making new connections, and for bringing all people's diverse relationships to disabilities into the room. The breadth of these goals soon outgrew one quilt so we created two.

The Windows Quilt offers a peek into the diversity of disability communities. Consisting of sixteen photographs, three graphics, two quotes from Paul and a portrait of him at the center, this quilt uses a classic quilting technique called Attic Windows. These images represent slices of disability past, present and future. Each image opens opportunities for discussions.

In one image, Deaf students hold up a “Deaf President Now” banner in front of the U.S. Capitol. Why did the Deaf students shut down Gallaudet University until the Board of Trustees selected the first deaf President? Just the way I wrote that sentence opens up discussions. People who have hearing impairment and who identify as part of the Deaf community, use the capital Deaf usage to show their cultural affiliation. This protest builds upon the U.S. history of underrepresented people fighting for representation in public leadership positions. Yet this is the first time that most Americans became aware of the issues. How is that protest relevant to the history of deaf people? To the struggle to prevent American Sign Language from disappearing? To students sitting in the Longmore Institute today at SFSU?

Some stories, while compelling, did not make it onto the quilt. Stories such as the long and tragic history of institutionalizing people with physical and mental differences; the deaths of thousands of people with hemophilia from tainted blood supplies and the ongoing poisoning of the next generation with the hepatitis virus; the struggle between people with disabilities and the nondisabled people who “speak for” them; the parallel struggles of the HIV/AIDS communities and other people with disabilities; and so many more.

The quilts, at their best, merely begin the discussions. The work of the Longmore Institute provides many opportunities to deepen and expand those discussions and to initiate ones not yet imagined.

The pull to provide a specific memorial for Paul proved too strong to resist so we created a second quilt, the T-shirt quilt. At his death, Paul’s colleagues collected 54 of his favorite political t-shirts for preservation. Eugene Chelberg and David Meissner collected, catalogued, washed and ironed them. From this collection, we chose thirteen. From the whimsically designed yet insightful “Why be normal? Normal is so mediocre” to the direct “Nothing About Us Without Us,” these shirts are but a taste of Paul’s deep belief in full equality and his love of the mischievous such as in the drawing of a group of blind gondoliers over the words “The Venetian Blind Society.”

Each of the two large quilts, the Windows Quilt and the T-shirt Quilt, reflect and honor the work of Paul K. Longmore and his specific connection to SFSU.

As with all creative projects, many people worked together to create these amazing quilts. Babette Schmitt provided many artistic insights, found obscure images after the rest of us gave up, kept our spirits up during late night sessions, and made the work feel effortless. Cathy Kudlick provided a clear direction, brought diverse and needed resources, and carried Paul’s spirit throughout the project. Graphic designers shaped the design and made our images useful, most notably Terri O’Hare and Alex Ho. Quilter extraordaire Melissa Quilter lent her nimble fingers to the ever-growing project. I provided the metaphorical rubber bands that held us all together throughout this exciting and challenging project.

I hope that you enjoy these quilts as we honor and continue the work of Paul K. Longmore. He changed the landscape of disability history and SFSU. He is missed.

Quilt block descriptions:

Beginning at top left: A light-skinned female dancer wears a sleeveless, thigh high black dress. Her body is without arms. She leans her head back and kicks her right leg high into the air, toes pointed, while her left foot rises onto her tip-toes. Her long dark curly hair hangs down her back as her face looks upwards. Behind her a thin, white curtain falls down to the ground with a strong light behind it.

Block 2: Oakland based Deaf performer and dancer Antoine Hunter leans forward, forearms reaching, hands touching with fingers open and reaching. Antoine's dark African-American skin shows strong dancer's muscles, particularly in his arms and shoulder. He is wearing a red tank top, black pants, a necklace with an oval white disk with two holes in it. He appears to be in his late 30s, has a dark moustache and beard, and a short afro. He faces the camera, looking slightly above it.

Block 3: The word ‘love’ is spelled out with large silhouetted fingers against the wall of a building. In the bottom left corner, a yellow wheelchair rider stick figure holds hands up triumphantly in the air. Over the hands the background writing says “Accessibilidad universal.”

Block 4: A close-up self-portrait painting of Frida Kahlo, the 1933 "Self-Portrait with Necklace." Frida is a medium-skinned Mexican woman with dark bushy eyebrows and a faint moustache over lipsticked lips. Her dark hair is pulled back into a braided bun at the base of her neck. She wears a white blouse with lace trim and a necklace of pre-Columbian jade beads.

Block 5: A quotation by Paul K. Longmore printed onto bright green fabric that reads, “We are building a culture of pride, freedom and self-determination. “

Block 6: A light-skinned man (apparently a father) kneels down next to a young, light-skinned blind girl, approximately 6 years old (apparently his daughter). She holds a white cane in her left hand. The background is a garage and driveway.

Block 7: Illustrated images of 7 different hands, including 5 hands belonging to different ethnicities, a dog paw, and a hand with a hook. All of the hands are forming a circle making different hand shapes including the American Sign Langauge "I love you".

Block 8: Three members of Axis Dance Company strike a stunning pose; the center dancer, Bonnie Lewkowicz, as a light-skinned female wheelchair rider, opens both arms out to her sides. The other two dancers, both light-skinned women, leap back to symmetrically frame the center person. They both are bent at the waist, toes pointing towards Bonnie, arms stretched backwards with fingers pointing away from Bonnie. All three dancers wear black tank tops and black pants. Bonnie wears black shoes, the other dancers are barefoot. This photo is by Margot Hartford of a rehearsal of the Axis Dance Company production of "Fantasy in C Major," a 2000 dance choreographed by Bill T. Jones.

(ROW 2) Block 9: Image of the Capital in Washington DC with a large banner reading “ DEAF PRESIDENT NOW.” Behind the banner are supporters of this cause holding three vibrant waving flags; blue, yellow and red.

Block 10: An Asian woman has extensive burns on her face and her forearms are amputated six inches below her elbow and have burn scars. Her face stares intently towards the caligraphy paper where she draws the apparently-Japanese characters. She holds the long bamboo brush between her arms. She has short dark hair and wears a black shirt covered by a read sweater and a black smock. On the table are an ink well, some completed drawings and a lock that is holding down the edge of the drawing paper.

Block 11: The centerpiece image of this quilt is a photo of Paul K. Longmore (1946-2010). Paul, a grey-haired, middle-aged white man, leans forward in his wheelchair. He wears a black turtleneck shirt and a dark grey suit jacket. He holds a ventilator hose in his mouth as he stares intently forward.

Block 12: A light-skinned young person approximately 15 years old stands at the beach wearing a black tshirt with a large teal wave design and the words "ADAPT SURF". They are laughing with mouth wide open, hands raised up and smiling eyes. They have thin wet short medium brown hair.

Block 13: Three white people surround a recumbant tricycle that holds a sign that reads “Pride Revolution: Chicago Disability Pride 2010.” In the center is a painting of a red heart with a yellow raised fist. Eli Claire, author from Vermont, rides the recumbent bike. His feet are up on the pedals, he wears a sleeveless black tshirt, black shorts, a few tattoos, a black bowler hat, black-framed glasses and a large rainbow paper flower lei. To his right (left in the photo) stands Riva Lehrer, artist from Chicago, wearing a black tank top, green shorts, high-top black boots with rainbow shoe laces, a red purse with the strap slung across her chest, dyed red hair with a front forelock of grey. To Eli's left (right in the photo) is Samuel Lurie, a social worker from Vermont, who wears a white tshirt, blue jean shorts, black sneakers, a very large rust-colored floppy sun hat, and a matching rainbow lei.

Block 14: Phamaly Theatre Company (formerly known as The Physically Handicapped Actors & Musical Artists League) performs the Wizard of Oz. In this photo (from left to right) the Scarecrow is a deaf actor in a very blue costume and makeup, Dorothy is a young light-skinned blind woman who's black lab guide dog plays Toto, the Cowardly Lion holds up a white blind cane, and the Tin Man is a female actor using a wheelchair.

Block 15: A Tom Olin photograph of a disability rights demonstration: A crowd of people of many different skin tones, mostly all in wheelchairs, form a long line side-by-side facing the camera. One holds a protest sign that reads "Redirect 25%" while another person hold a large flag similar to the American flag but with stars making an outline of a person sitting in a manual wheelchair.

Block 16: The logo of the organization ADAPT, which assures the civil and human rights of people with disabilities to live in freedom. This image is a rendition of the universal disabled image of the person in the wheelchair but the figure's arms are raised in fists and the chain that attached the two wrists over the head is now broken. The image is printed on green fabric. Over the figure is the word "ADAPT" and under is the phrase "Free Our People."

Block 17: A 50 year old African-American woman, Deborah Dixon aka Dix, with a non-apparent disability smiles with pride, wearing her Bachelor's graduation garb.

Block 18: A medium-skinned blind woman shows her cell phone to the photographer, revealing the braille on its keys.

Block 19: A second quote, this one printed on brown fabric, from Paul K. Longmore states, “Discrimination is a bigger obstacle to overcome than any disability.”

Block 20: A dark-skinned man wearing a police uniform of blue long-sleeved shirt and black pants pushes his manual among parked cars. On the back of his black wheelchair is a large white sign with black letters that says "Police." His smiling face is turned to the right.

Block 21: A dark-skinned African-American man is protesting by lying next to his power wheelchair holding a sign stating “Nursing Homes Kill!”

Block 22: A group of disabled veterans bowling together. In this photo, the man in front is a light-skinned man in a red manual wheelchair who has just released the bowling ball. He wears a tan tshirt with the words "Home of the Free," a khaki baseball cap and blue jeans. Behind him is a dark-skinned man wearing glasses with a blue tshirt and blue jeans in a blue manual wheelchair.

Block 23: This pen-and-ink drawing shows a line of children moving together. Leading the group is an Asian-appearing young woman wearing a plaid jumper and sweater riding with white socks and shoes in a rear-wheel drive Everett & Jennings power wheelchair with a tray top where her arms are leaning as she drives forward intently. Holding onto her chair is a light-skinned child about the same age wearing a dark tshirt, dark pants and dark hair with roller skates. Holding on next is light skinned child with a v-neck shirt, light shorts, white skates and shoulder length blond hair. The fourth child is light-skinned and blond wearing a long-sleeve shirt with the sleeves rolled up to the elbow and blue jeans with dark skates. The fifth child, a medium-skinned girl, has dark hair, white skates, wears a light tshirt and dark skirt. The final child is light-skinned, medium-blond hair, wears a dark tshirt, blue jeans and dark skates.

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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