Paul K. Longmore Institute on Disability - Telethons

A Telethon Revival in 2020, Seriously?

Nathan Burns — Wed, 21 Oct 2020 20:42:32 +0000

By: Cathy Kudlick

The Muscular Dystrophy Association (MDA) will proudly revive its iconic Jerry Lewis Telethon on October 24. Coming in the midst of a pandemic and polarized political climate, the decision is both a brilliant move and a blow to the disabled people who make up 1 in 4 Americans.

Everyone knew of the extravaganzas that dominated American television each Labor Day weekend in the 1960s through early 2000s. A blend of “television” and “marathon,” the variety shows featured cheesy comedy, magic acts, gospel choirs, big name entertainers, and CEOs with household names who joshed with emcees like comedian Jerry Lewis as they celebrated rising donation numbers on giant glistening tote boards.

By many measures, this is a perfect time for a revival. People across America are anxious, depressed, and bored. An opportunity to support scientific work that leads to understanding disease while improving someone’s quality of life seems refreshingly non-partisan and humane. Not only that, but according to MDA, over a half century Jerry Lewis raised over $2 billion for research, equipment like wheelchairs, and life-changing summer camps for kids with disabilities.

So why are many disabled people and our allies worry that the telethon’s revival could do more harm than good?

The simple answer: despite significant gains symbolized by the 1990 Americans with Disabilities Act (ADA), these fundraising efforts draw on outdated stereotypes that rob us of dignity, and ultimately of options. The program’s return threatens precarious gains on mainstream TV with shows like “Speechless” and “Glee” starting to chip away at telethon-inspired ideas directly descended from pitiful Tiny Tim and freak shows that displayed human oddities for profit. Because telethons set a stage with stories scripted by the nondisabled, we rarely get to be heroes in stories of our own telling, which leaves us one-dimensional, damaged strangers.

While on the surface the October 24 event may look updated with today’s latest tech, keeping the name and favorably mentioning Lewis (abruptly fired from MDA in 2012) suggests little has changed. We’ll be pleasantly surprised to find evidence of boldly-expressed lessons learned from the disabled people who protested against being used on the shows to inspire pity and who condemned Lewis for his contempt for disability rights; a-political framings of hopelessness and tragedy are hard to shake when it comes to disabled people, especially after decades of repetition in successful fundraising.

Here’s the thing: attitudes like these sneak in unawares, for people with and without disabilities. They’re passed down through generations to media influencers, to presidents and policy makers, to teachers, to doctors, and to potential dates. They surface in too many Hollywood hits where people with disabilities (played by non-disabled actors who unnervingly often win Oscars) are angry, sad, bitter, but “fortunately” choose suicide. They arm the playground bullies and fuel the giddy horror of TikTok’s recent “New Teacher Challenge” where parents shared images of their own children reacting in horror after seeing a photo of someone’s facial disfigurement and told this would be their teacher.

Let’s face it: stories that inspire donors to give money to seek a cure for childhood diseases aren’t the ones that convince those same donors to hire, include, date, or learn more about the person with a disability they’ve just met. Telethons have no incentive to show the resourcefulness people with different disabilities bring to crossing a street, communicating, figuring out a bureaucracy, using technology, cooking a meal, or framing ourselves as competent to someone unaware that they’ve been brainwashed by telethons.

In the spirit of a truly forward-looking telethon that would improve more than a handful of disabled lives, here’s my dream for the October 24 event. It would raise money to undo the afflictions visited upon millions of people with disabilities and our families by fifty years of propaganda. To test my theory that telethons need disabled people more than disabled people need telethons, it would be run by and for people with disabilities — nothing about us without us! It would seek a cure for bullies and shame and prejudice. It would foreground our unique expertise on the fragile points in the healthcare system and government assistance programs. It would educate viewers about how much more rewarding it is to live in solidarity and interdependence than clinging to false dreams of independence. Alongside pain and frustration, it would share the exuberance and joy of the disability community.

If so moved, give to the MDA Telethon on October 24. But don’t be lulled into thinking “mission accomplished.” Pair this with learning more about what disabled people are doing in the arts, politics, and education to make society better, then donate to them too. Fighting for a medical cure is an especially worthy cause in a pandemic. But until that cure arrives, so is supporting dignity, opportunity, and a decent quality of life for every human being.

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Telethons

disability history

activism

ADA

Remembering Paul Longmore Ten Years Later

Emily Beitiks — Fri, 07 Aug 2020 21:47:57 +0000

By: Cathy Kudlick

Monday, August 9 2010 - It’s hard to believe that it’s been ten years since we lost the friend, mentor, scholar-activist provocateur for whom the Longmore Institute was named. Paul would have turned 74 on July 10. The author of The Invention of George Washington would probably have found a way to wrangle a ticket or two or three to “Hamilton” on its first night at San Francisco’s Orpheum Theater in 2017. He’d have applauded the multiracial twist on American history and would have wondered within earshot of many why Gouverneur Morris (the man with significant disabilities responsible for “We the People” preamble in the US Constitution) didn’t have a central role and even romantic lead. To the line “Revolution is messy but now is the time to stand,” he would have cheered louder than the rest, then quipped: “standing can be messy too.”

The author of Why I Burned My Book and Other Essays on Disability would have much to say about the present world. He’d have read multiple papers cover to cover, though most would be online because he’d have replaced his big newspaper-reading table and page-turning contraption with dozens of news apps he’d check in with on a daily basis. On Facebook he’d fume about the lack of leadership in Washington and would have penned and phoned scores of messages to politicians about the need for affordable healthcare—especially in the age of COVID-19, equal distribution of medical equipment, and how important it is to include the disabled perspective in every conversation about resources, medical rationing, workplace protections, and the meaning of life. He’d also rail against the magical thinking and denialism of those in Washington and in some state legislatures that have created and exacerbated the coronavirus spread and blocked its proper management.

The author of Telethons: Spectacle, Disability, and the Business of Charity would caution against quick fixes led by the private sector and the decades-long defunding of the public health sector. He’d also worry that in this age of renewed scarcity and economic retrenchment the charity model would become the central way for Americans to find medical and economic relief. He’d zero in on failure and greed within the nursing home industry, the push to limit resources, be they physical such as crowded conditions or personnel who are under-trained and under-paid. He’d also urge people with disabilities to keep pushing for better representations in the media that would forever erase images of pity and helplessness, instead emphasizing our creativity and productive challenges to the status quo so we’re seen as indispensable rather than disposable. For example, he’d point out that the resourcefulness of people with disabilities remains a coveted strategy amongst the non-disabled in this moment. To launch the next thirty years of the Americans with Disabilities Act (ADA), he’d cue people with disabilities to learn everything they could about the late Civil Rights Activist, Congressman John Lewis, particularly his invitation to make “good trouble.”

We desperately need the incisive analyses of Paul Longmore at this moment, his understanding of the past, the present, and the future and his advocacy of social justice. So our charge is clear: keep our collective fires burning for generations to come.

And here’s a teaser for anyone who read this far: a recently discovered scrap of Paul’s writing is about to be published in an exciting new anthology. Stay tuned!

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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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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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