Paul K. Longmore Institute on Disability - Paul K. Longmore

Donor Profile: Alisha Vásquez

Visitor — Mon, 12 Sep 2016 18:24:58 +0000

Why Someone in Tucson, Arizona Supports the Longmore Institute...

Before Alisha Vásquez was teaching as the first person of color in Earlham College's Border Studies Program in Tucson, Arizona, she was a grad student at San Francisco State University. A 5^th generation Tucsonan, Alisha was the first in her family to go to college after receiving a scholarship to the University of Arizona. A queer Chicana with a disability who grew up on welfare, she now draws from her own personal experiences to make her a better teacher, as she educates students about the history, politics and identity of the US Mexico border; “My body is a textbook” she says.

She moved to San Francisco to get a Masters degree in History in 2010, and even managed to find an apartment three blocks away from where her grandmother, a polio survivor, grew up.

And then, during her second week in the city, she heard the news that Paul Longmore, who was to serve as her advisor, had passed away.

Yet, she still managed to learn from Paul during her time at SF State. When the university decided to archive Paul’s papers, they turned to Alisha for help. “I was in HSS for hours and hours with his boxes, and he was present with me. His spirit was there, and I did get to know him by seeing what comics he cut out or what mementos he kept... I had to go through each box and sort out what mattered and what didn’t, and that was really hard.”

After hiring archivist Kate Tasker to pick up where Alisha left off, we launched the Longmore Papers in the J Paul Leonard’s Special Collections in 2014, and we flew Alisha out to join us for the celebration. She recalls how meaningful this was to her:

The time I was at SF State was such an intermediary between Paul’s time there and really getting the Institute going, so it felt hard to accomplish anything ... So to be recognized and be invited back and see what came out of that early time in Paul’s office, I felt it was very generous, very meaningful that maybe my efforts were that bridge that kept it going. And also seeing all the folks who showed up, his friends from the History department, administrators that remember him so fondly, and the Bay area community. Remembering that I had a tiny part in that was huge.

She still follows the work coming out of the Institute because she knows firsthand the importance of what disability scholarship as well as spaces like the Institute can bring to college campuses. She remembers her first day of college at the UA: “It was disorienting seeing how much wealth some students had, I felt like a foreigner in my hometown. Every day someone would ask ‘What happened?’ because I walk with crutches. If I wore shorts or a dress, showing my scars, people stared even more. I almost dropped out. But I read Zami: A New Spelling of My Name by Audre Lorde for the first time in my second semester, and it was the first book I saw myself in, as kinda having a disability. I was still on the fence about returning, but that summer I read a small part of Rosemarie Garland Thomson’s Extraordinary Bodies with a grad student. I was vulnerable and talked about my fears with her and started to see myself as a part of something bigger. Then my next year I found Chicana feminist studies as well.”

She recently showed her support by donating $10 to the Institute with the request that it be used to support POC disability studies. Alisha agreed with the Institute’s philosophy that what’s important is not how much someone gives but rather that they are giving at a level that’s personally significant to them, as this gift was for her. Finding that many disability spaces are not inclusive to people with disabilities who are further marginalized by race, sexuality, and economic status, Alisha says, “I’ve followed the work Emily and Cathy are doing and I’m just happy how much more color has been part of it. So I’m thrilled to contribute to that in even the most modest of ways.”

Alisha was humble during the interview about what she did for the Institute, both with her donation and also in sorting through Paul’s boxes, but we know how important her contributions are. How fortunate the Border Studies Program is (which has grown increasingly more diverse thanks to her efforts) to have an instructor who can guide students coming from marginalized backgrounds to find their place in higher education, reminding them of their right to be there. While she might not have gotten to work closely with Paul Longmore, they certainly share this in common.

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Alisha Vasquez

disability

donor profile

Longmore Papers

Paul K. Longmore

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Pushing Limits: Disability as an Unexpected Gift

Visitor — Fri, 01 Jul 2016 18:38:34 +0000

Bravo to the Oxford University Press blog for publishing the following feisty piece about Paul Longmore's Telethons book by director Catherine Kudlick:

http://blog.oup.com/2016/07/disability-telethons-charity/

This year, a San Francisco Bay Area radio station, KPFA, will offer a scholarly book as a gift in its July 2016 pledge drive. Sure, these pleas for listener contributions often give away books, along with the iconic tote bags and baseball caps. But this particular book is not the usual token of appreciation.

Ironically, Paul K. Longmore’s, Telethons: Spectacle, Disability, and the Business of Charity exposes the problematic history of fundraising and charitable giving. In fact, the book–and the gift– push us to look at the real damage that’s done when pathetic and tragic images of disabled people are used to raise money.

A film such as the recently-released “Me Before You” that celebrates a disabled man taking his life to unburden his non-disabled personal care assistant isn’t about someone’s choice to end his life; it’s actually an example of having too few choices for how to think about disability. We’ve been brainwashed by programs such as the pity-inducing telethons which, because of their monopoly for over a half-century, eclipsed other stories, other images, other possibilities for living as a person with a disability.

In their heyday, everyone knew of the telethons that dominated American television for a half century. Over the years, they slowly faded away from popular culture until the last one aired with barely a whimper in 2015.

A portmanteau of “television” and “marathon,” telethons first took root in the 1950s, primarily to raise money for disability-related charities. Initially, these over-the-top, cheesy variety shows were local and lasted just a few hours. But quickly they grew into a national phenomenon that sometimes ran nonstop for over 40 hours (remember, only a few channels and no Internet!).

Despite kitschy programming, telethons were serious (big) business for disability-related charities such as March of Dimes, American Arthritis Foundation, United Cerebral Palsy (UCP), Easter Seals, and Muscular Dystrophy Association (MDA). Among other things, they influenced how Americans thought about generosity, corporations, healthcare, and disability.

To be sure, thanks to the billions of dollars they raised, telethons genuinely helped some people. For example, they made it possible for someone to get a wheelchair when they couldn’t afford one, attend summer camp, and of course, helped fund medical research. And they put people with disabilities, long hidden away at home, in public in ways unprecedented in history. Indeed, thanks to the programs, many people with disabilities discovered other people like them for the first time.

But the good was far outweighed by the toll it took on disabled people. The organizations raised this badly needed money by playing on viewer’s emotions to show disability as horrific and creepy, as in this video where a man plays the part of a stalker. Meanwhile, people with disabilities were cast as helpless and pathetic victims of tragedy. Taking a page right out of Victorian sentimental literature (think Tiny Tim in Charles Dickens’ A Christmas Carol and other tales of woeful afflictions), children and their families made desperate pleas to viewers. Or they were heroic, brave overcomers who did everything they could to prove they weren’t really disabled. Whether victims or heroes, people with disabilities had no voice other than to reinforce messages of the able-bodied hosts and celebrities who depended upon disabled people to be victims of tragedy.

Since viewers never got to meet disabled people who thrived and actually lived full lives, it seemed perfectly okay to help fund medical research that would eliminate them, all of them. Equally problematic was the unrealistic goal of curing all disability, and the reality that people with disabilities would always be part of even the most modern societies. Put another way, the programs left little room for disabled people who would go on living, often even happy with their lives.

Indeed, watching the programs you’d wonder if many disabled people ever grew up. This was because disabled children proved effective fundraising tools, to the point that they became part of the entertainment as they struggled to walk across the stage to much applause. Years later, some recalled their crutches being taken away so that their struggles appeared even harder to the spell-bound audiences. Many remembered hosts smiling down on them as they heard parents and others exclaim how hard they made life for everyone.

The issue of course isn’t that people need help that generous souls can and do provide—it’s more how that help is awakened, what images media trot out to reinforce existing prejudices against disabled people. Without positive examples of individuals thriving and shaping their world, little wonder that the protagonist in “Me Before You” would decide to end his life and that viewers would applaud this as death with dignity. But change is in the air. Even if mainstream media continues to promote films like “Me Before You”, social media offers more options. Campaigns such as “This is What Disability Looks Like” on Facebook and #SayTheWord on twitter promote complex, interesting, unexpected views of disabled people from a disability perspective. Meanwhile, university programs and courses and grassroots film festivals question how people with disabilities have been and can be represented. There are also calls for seeing disabled people as a political constituency as well as Crip the Vote.

The pledge gift of a book about telethons from KPFA offers an example of this new thinking pushing through and pushing back. What sweet irony to learn a book that exposes how people with disabilities are exploited for fundraising will help keep “Pushing Limits,” a radio show run by and for people with disabilities, on the air. In this knowing wink among fighters for social justice there’s something much bigger: it’s a fiendishly subversive protest not with bullhorns and signs, but with lifted finger at a whole system that sacrificed dignity in the name of charity.

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Donor Profile: Advisory Council Member Eugene (Gene) Chelberg

Visitor — Mon, 20 Jun 2016 20:54:59 +0000

San Francisco State University’s AVP for Student Affairs Gene Chelberg has held a variety of leadership positions in higher education over the past 24 years and is proud to have counted Paul K. Longmore among his mentors and friends. Blind since the age of 13, Gene cofounded the Disabled Student Cultural Center (DSCC) while an undergraduate at the University of Minnesota. He first met Paul Longmore when he keynoted the Center’s grand opening in 1992.

Gene’s personal journey to embrace his disability is inseparable from his identity as a gay man. “The full coming out process really informed my experience as a disabled man, and even though I’ve been … aware of my disability more than my sexuality and was defined more externally by my disability than my sexuality, when I had the opportunity to define myself as gay, I then was able to later look at that experience and take the opportunity to redefine for myself what it means to be disabled and come out as disabled in a way that was about pride and culture and community.”

After Gene started the DSCC, Paul Longmore became an ongoing presence in Gene’s life as a mentor and his “disabled uncle” in his disabled family of choice.

When Paul Longmore died without a will and without any family in town, Gene and fellow advisory council member and SF State history professor Trevor Getz got together to "defend and protect" Paul’s intellectual legacy. After finding a safe space on campus to store his papers and books, they then started talking to folks who Paul was very close to on campus, like then President Robert Corrigan and Provost Sue Rosser. With the support of Paul Longmore's sister, they decided to donate and archive his papers to SFSU and rename the Institute he had initiated in 1996 in his honor. Gene says, “Those conversations all happened pretty rapidly, and there was just such good will because of the relationships that Paul had on campus.” After participating in the search to hire a new director, which brought Catherine Kudlick to SF State, Gene agreed to serve on the Institute’s advisory council. He shares, “I just love the way in which we’re taking disability and the work of the institute to the next level. Before, the Institute was really a mechanism for Paul to focus on his latest project … to be that igniter, that fire starter… but … other than his personal vision, it didn’t really have a broader intentional mission, vision and goals. I really think that the leadership of the Longmore Institute has embraced Paul’s personal vision and now made it more of a community vision [that] continues to honor Paul’s mix of academia and activism but is really taking it to a new and unanticipated level.” When Gene calls Paul a "fire starter," he means it both literally and figuratively! He articulates what makes the Institute unique: “The thing that’s really great about working with an institute that’s housed within higher education is there are opportunities to leverage the academic profile of the university to develop partnerships that you might have a greater difficulty doing otherwise.” Gene particularly enjoyed working with the Longmore Institute when he decided to host a fundraiser that invoked and inverted the Telethons, an event which he called “Loot for Longmore.” For 20 years, Paul had been writing a history of disability telethons, which did more harm for disabled people than good (this work was published posthumously by Oxford University Press this January). From a giant “March of Dimes” donation tin to the oversized dimes with a superimposed image of Paul Longmore’s face to the oversized checks from “Disability Activists” and “Academic colleagues of Paul,” the whole event playfully critiqued the telethon. Being led by a disabled person and having disabled people as the donors, rather than cast as the pitiful as telethons did, Gene felt, “It really was empowering, sort of reclaiming negative symbols, not reclaiming but CLAIMING them, that was a lot of fun.” He encourages more people to get involved:

If you want to make a difference in redefining what it means to be disabled, and tapping into the creative energy of disability, then the Longmore Institute is where it’s at.

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Teaching the Sighted about Blindness in a Way that Doesn't Suck (Leave your Blindfolds at Home!)

Visitor — Mon, 11 Apr 2016 21:51:04 +0000

By: Emily Beitiks For years, well-intentioned teachers have used simulation activities to teach sighted people about blindness. You put on a blindfold, stagger around a building for a few minutes, and typically rip the blindfold off at the end with a newfound gratitude that you aren't one of those poor, tragic blind people. Understandably, blind people have criticized this educational "tool" for causing more harm than good, when all it simulates is the first few moments of seeing nothing. Who wouldn't be completely traumatized by being thrown into the world without learning the many alternative ways of doing things?

After taking a tour of the state-of-the-art San Francisco LightHouse for the Blind and Visually Impaired that will open June 10, I am excited to report that new options are coming, (and you can leave the blindfold at home!).

Just teach your students about the design and access features in this new building, and maybe if you’re really lucky, like I was, you too can take a guided tour with project manager Elizabeth Freer (sighted) and consulting architect Chris Downey (blind). This lesson will leave sighted folks with a stronger grasp of how blind people navigate the world and how really smart design to minimize barriers might make doing it even easier in the future.

The building is located at 1155 Market street. LightHouse bought the entire building, but will occupy the top floors 9-11 and rent the other spaces.

Here's what happens when blind people have the clout and the resources to call the shots with an appreciation for beauty and a sense of playfulness. From floor to ceiling, the project team has worked eighteen-hour days to ensure that the building's design incorporates what can only be described as an aesthetic of blind and low vision users. Different textures on the floor distinguish between highly trafficked paths and workspaces. Lights and sounds direct people towards exits and determine what direction they are facing (as 95% of blind or low vision people see light). Acoustic designs throughout provide important cues, from how to operate the audio-visual equipment to what else is going on in the community space. A brief pause on the tour while Chris and Elizabeth test the sound of the newly installed fans in the training kitchen. Another obstacle: safety from fires vs. the need to minimize all background noise.

And it isn't all utilitarian. Wood on the handrails and the edges of tables are satisfying to touch, just as the floor texture was also chosen so that cane tips had a pleasant sound and feel for users getting from one of the plush small offices to one of the many open areas to share coffee and converse.

Together, every detail lets visitors know that they're in the center of a very happening place to be. As blind architect Chris Downey put it for San Francisco magazine, “We wanted to convey the idea that this is an exciting place and promote a sense of possibility as opposed to the idea of fear.”

I won't spoil all the building’s secrets before their big launch, but the whole experience blew me away (and luckily for me, I will get to visit this space often as the Longmore Institute partners with the LightHouse to run Superfest: International Disability Film Festival). After the tour, Longmore Institute Director Catherine Kudlick remarked, “I was near tears at a few points. It really feels like the dawn of a new era for blind folk!” But even better yet, the design team didn’t limit their focus to blindness and considered all forms of access, for example, for Deaf people, wheelchair riders, little people, the needs of families. At the Longmore Institute, we know how challenging this can be from our efforts to maximize access while designing the “Patient No More” exhibit. Competing accommodations can be difficult to negotiate, but the art of striking the right balance is so very worth it when it succeeds, bringing different disability communities together.

So, educators who feel that impulse to teach your sighted students about blindness, look to the SF LightHouse instead! When the building opens, sighted visitors will see people new to blindness training alongside old hands updating their tech and cooking skills. They'll see blind staff people working in nearly every aspect of operations, including Executive Director Bryan Bashin.

As Paul Longmore once said, "Prejudice is a far greater problem to overcome than any impairment; discrimination is a bigger obstacle than any disability." Here's to replacing those traditional simulations of blindness that leave participants feeling sad and dreary with a form of emersion that teaches something joyous and new.

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accessible architecture

accessible design

disability

LightHouse for the Blind and Visually Impaired

Patient No More

Paul K. Longmore

Superfest: International Disability Film Festival

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The Man Behind Telethons

Visitor — Fri, 11 Mar 2016 22:08:53 +0000

The message was "The reason we're doing this is 'you must walk'"...it was completely required of disabled children--Corbett O'Toole

Our second public event to celebrate the launch of Paul K. Longmore's Telethons: Spectacle, Disability, and the Business of Charity held at the Ed Roberts Campus brought out Paul's friends, colleagues, and fellow disability activists. We gained insight and antidotes from Paul's closest friends but also discussed some of the bigger issues and inspiration behind Telethons.

The evening began with a warning: incoming clips from 1970-80s telethons may make you throw up. As a montage of music performances, glittering 'grand total' signboards, and cute disabled children rolled across the screen, many attendees were reminded of what it was like to really watch a telethon. As Longmore Institute director and Telethons editor Catherine Kudlick explained, "Telethons taught Americans how to think about disability and the body...and that was bad." Telethons brought disability into American prime-time, framed as a primarily monetary quest for a 'cure.' Panelists and attendees relive classic 1970s-80s telethons.

"The reason we're doing this is 'you must walk'" recalled panelist Corbett O'Toole. Like Paul himself, disability activist O'Toole was affected by childhood polio. She herself was paraded as a local poster-child and remembers thinking that all of the children that appeared on screen would eventually be 'cured.' For O'Toole, telethons were a part of the pressure she experienced throughout childhood to learn to walk, pushing her beyond physical limits, which resulted in increased wheelchair use later in life. For other viewers, telethons were a parade of sickly children. One attendee recalled running into kids she'd known growing up who asked her why she wasn't dead yet - an assumption they'd derived from watching the telethons.

Personal stories such as these illustrate why Longmore's efforts to capture this history is so significant. Panelist Ralf Hotchkiss called Telethons a book of stories. Readings from his favorite excerpts, many of which came from the footnotes, he touched on Paul's personal life and friendships. As panelist Anthony Tussler explained, "Paul documented something that's part of the disability rights movement that would have been lost."

Paul's voice as a scholar-activist shines through. Telethons is a systemic critique of how this social phenomenon affected both disabled and non-disabled people. Kudlick refers to the book as a "call to action" that "lays down the foundations for thinking about the future of people with disabilities." While the content of the book is groundbreaking, the dialogue it can spark in one evening discussion is just the beginning of Telethons' true impact.

The discussion continues as attendees mingle.

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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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Launching Paul Longmore's "Telethons"

Visitor — Wed, 17 Feb 2016 19:54:37 +0000

By The Paul K. Longmore Institute on Disability

"Editing a book that the author called his 'magnum opus' explains my short fingernails" - Catherine Kudlick, Longmore Institute Director and Editor, Telethons

Last week, the Longmore Institute teamed up with the J. Paul Leonard Library and Friends of the Library to celebrate the long-awaited launch of Telethons: Spectacle, Disability, and the Business of Charity. Telethons editor (and Longmore Institute Director) Catherine Kudlick addresses the crowd.

Telethons was the culmination of many years of research throughout Paul's career. After his death, colleagues felt a 'call to arms' to get the work published. As editor Catherine Kudlick explains, "Paul's book was a big dare.... He dared me and others to open the door for lasting change." Paul dared people throughout his entire career as a scholar, colleague, and friend. As fellow history teacher and friend Trevor Getz recalled, "Paul was an amazing mentor, especially if he knew you had an ego to match his...[he] was about scholarship that made a difference to people and the societies they lived in." (Read the complete transcript of Trevor's thoughts here) Archivist Meredith Eliassen shares some insight on Paul as a scholar with selections from the Paul K. Longmore Papers, housed in the Library Special Collections and Archives.

As both an academic and activist, his work in Telethons continues to break new ground in Disability Studies, boldly proclaiming that "Telethons needed disabled people more than disabled people needed telethons." But the launch of Telethons has also given us the opportunity to bring together Paul's colleagues, students, and friends for some perspective on the man behind the book. Missed the event? Watch it here: [youtube https://www.youtube.com/watch?v=xRlooSPGrW0] Join us for our next launch event on Wed. February 24th at 5pm at the Ed Roberts Campus for a book reading and reflections from some of Paul's Bay Area activist friends. Gene Chelberg offers opening remarks and introduces Provost Sue Rosser.

*Thank you to Ned Fielden for the photographs! Watch the event here: [youtube https://www.youtube.com/watch?v=xRlooSPGrW0]

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Catherine Kudlick

disability studies

Gene Chelberg

J. Paul Leonard Library

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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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.

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

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

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

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

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

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

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

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

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

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

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

Link to the news segment here.

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Americans with Disabilities Act