Paul K. Longmore Institute on Disability - Catherine Kudlick

Umeå 1: Hospitals and Hospitality

Emily Beitiks — Fri, 10 Jan 2020 00:43:53 +0000

By: Catherine Kudlick

On my final day of a month-long visiting professorship at Umeå University, I returned to the hospital for the fourth time.

If you’re like me, reading a sentence like this makes your body clinch up with dread and worry. Oh no! Did she get sick or have a condition she’s been hiding? Or did she slip on the ice? Should I keep reading - I want to know but I don’t want to know….

Here’s the thing: I found myself in northern Sweden’s largest and best hospital because it occupies this unusual central place in the life of the university and the world around it. The first time, it was to buy ground coffee and a small press-pot in a popular place that everyone told me sells some of the best coffee in town.

The second time it was because a colleague had invited me and some others to dinner, and we took a shortcut through the warm maze of buildings as a brief respite from the wind and ice that swirled outside; we weren’t alone as we wound through modern corridors surrounded by people, some in groups, others walking bicycles (a couple riding), a wheelchair or two, chatting with friends, just a typical Saturday night in the hospital.

The third time it was to buy a bus pass, followed by a delicious lunch buffet at the hospital hotel (one of the nicest in town I was told). I waited in real lines with real people doing real things, not stuck in that sterile hospital weirdness.

But it was the fourth time on my final day that totally blew my mind. I’d offered to accompany one of the post-docs who was anxious about a routine medical procedure that I’m familiar with. After she finished (greatly relieved to have it over with), on the way out we discovered a wonderful library with wood and plants and books and comfy chairs to read in. Since it was holiday season (and daylight lasted less than five hours), there was a class for candle-making. There were at least two actual librarians, and on their desk was a basket full of free small pins; on a rainbow background and in a dozen languages to choose from, each one said “It’s your right to be you.” If you were associated with someone who was staying in the hospital, you could check out one of the many novels or children’s books, and there was a room for watching DVDs. If art was your thing, there was a gallery attached to the library where local artists displayed work and sometimes give gallery talks. Just down the hall several people were lingering in a fascinating medical history museum.

And if you pushed through the mixed crowd of people in winter coats and hats interspersed with health professionals in scrubs and janitors tidying up, you came to store that sold mobility equipment like walkers and grabbers and specialized eating utensils alongside wheelie carts to haul groceries, yoga mats, and other everyday stuff to remind you that — like a hospital itself — healthy living isn’t just about what’s perfect and pure.

Sweden isn’t paradise. Indeed one of my take-aways during my month-long visit was the heartbreak of watching the disabled people I met discover that their country is afflicted with the disease of austerity which, while still less acute that what we have in the US and other western European countries, poses a growing danger to Sweden’s long-celebrated safety net.

Still, Umeå University Hospital set me dreaming: if hospitals and more copious definitions of health were more integrated into the large and small of everyday life, maybe the people needing care — and ideas of care itself — would make it harder to turn away from people we falsely believe have nothing to do with us.

Tags:

medical model

social model

Sweden

Catherine Kudlick

Six Reasons to Take the SF Disability Community Cultural Center Survey

Emily Beitiks — Mon, 10 Dec 2018 19:57:54 +0000

By: Catherine Kudlick

We all know the feeling: after years of being grumpy because nobody wanted my opinion as a person with a disability, it seems like everyone now wants it through an inbox bursting with surveys and polls. It's easy to be cynical. Do this many groups really care or is this some new fad? We’re busy. We delete. (If you're already feeling guilty, take the survey here: www.surveymonkey.com/r/SFDisabilityCenter)

Here’s the thing: we really need your feedback! Read on if you’re willing to let us make our best pitch for why this is worth your time.

Because surveys need to be straightforward while acknowledging messiness and complexity, we had to put tons of work into it. We poured our hearts and souls into everything from words to commas – if computers didn’t automatically dot “I’s” and cross “t’s” we might have debated that too! Despite all the feedback we got from our team of advisors, we didn’t always get it right, but we tried. For example, we inspired a heated debate on Facebook about the best words when it came to transgender folks. (Convinced? Take the survey!)

Surveys are actually conversations. Not just with strangers but with yourself. You get to ask yourself: What do I think? Why do I think it? Do the questions speak to me and what I believe needs to be said?(Discover if this is true by taking the survey!)

There’s something powerful about embracing the idea that your perspective and voice matters. (To feel that power, go here.)

Unlike mandatory trainings and reviews of your experiences after five seconds on the phone with a company rep, this survey really wants to know what you think. We’re working hard to get feedback from as wide a variety of people as possible because that’s what will make a future center vibrant. Because we believe in disability justice, we need to know what a broad spectrum of people with disabilities want and need, not just the privileged and the loud. (Yeah, I do care about disability culture and disability justice, so maybe I should weigh in.)

Surveys are used to justify decisions. If the response numbers are low, people with power say people don't care. (Come on, you’ll feel terrible if they build whatever they want because too few people mentioned something you care about.)

Here’s the airy-fairy meta one: surveys are one of those cool places where the past and the future touch. Your experiences (the past) meet your expectations (the future). (Never thought of this? Check it out!)

So, if you’ve gotten this far and still aren’t sure, it means you really do care. Take the survey already, and not only that: share it with three other people! We've extended the deadline until December 31, 2018 so now you have even more time to take it. But why wait...

And THANK YOU!

Tags:

Disability community cultural center

San Francisco

Catherine Kudlick

In My Mother's Eyes, and Mine

Visitor — Wed, 09 May 2018 21:42:20 +0000

The following blog is cross-posted from an Opinion piece by Catherine Kudlick, which was part of: The New York Times weekly Disability series

Credit: Elisa Talentino

I was blindfolded. My legs dangled off a chairlift high above the Colorado ski slope. I nervously licked at little bits of snow that tickled my lips. I was 43, and this was my first time downhill skiing. Whenever the contraption shuddered and bumped, I was convinced that we had become unhitched from the cable and were about to plunge to our deaths.

But assuming my experienced guide was right and we survived the ascent, what then? What should I do with the poles at the top? What if my skis got tangled up? What if the chair knocked me unconscious after I’d dismounted? And how would I explain this to my mother? I recalled the day not long before when I first broached the topic of my coming training at the Colorado Center for the Blind in Littleton. Hoping to appeal to her adventurous and quirky side, I explained that the program was a bit like Outward Bound. For those who had even slight partial vision, as I do, it involved wearing sleep shades as you did activities — including skiing — that most people assumed could be done only by the sighted. Mom agreed that this training would help my research on the history of blind people. As a social worker who had been active in the League of Women Voters studying inequalities in the juvenile justice system, she approved of my scholarship on marginalized groups.

But accepting that her daughter belonged to one of those groups was another matter.

After all these years, the idea that I might be blind enough to benefit from the program didn’t seem to register. I was born two months premature and totally blind with cataracts. Then several months later, I startled when my dad used his new camera flash to take a picture of me nestled in a butterfly chair. This wasn’t supposed to happen. Realizing that my eyes might actually be functioning, my parents whisked me off for the first of what would be a series of operations that would punctuate my life, initially giving me sight, then improving it, then saving it when it almost disappeared, and later improving it again. These procedures ultimately allowed me to see about 10 percent of what fully sighted people do. Thrilled that I wasn’t completely blind, I grew up as a profoundly visual person who believed in medical miracles. Each surgery brought some new discovery — the flicker of a candle, shiny wrapping paper, our silky black cat asleep on the golden chair. Everything I could see excited me and still does.

But while most people fear blindness because they perceive it as being lost in the dark, I associated it with being thrust into the spotlight.

It was easy to pretend that I had decent vision until the taunting began in elementary school. My cataracts left me wearing thick bifocal glasses and with a condition called nystagmus, rapid muscle movements that make my wandering eyes carry on a rich life of their own. The more I try to hold them still, the more they move. When I was a kid, a doctor explained that my eyes were “always looking for something better to see.” For me, it wasn’t always so poetic. One of the many operations I had as a young adult required the surgeon to carve out a larger hole in both pupils, with the painful consequence that my eyes are permanently dilated, and thus extremely sensitive to light. I have trouble walking outside at night or in crowded, chaotic places such as airports or hotels. When I’m tired or anxious, my visual world essentially disappears. I can use only one eye at a time, which means I lack depth perception, and I’m easily confused by shadows, brick walkways, curbs, steps and changes in floor texture. I can’t say for certain when shame obscured all the other complex feelings about my poor eyesight; I only know that unless it involved the miracle in the butterfly chair, we seldom talked about it at home. Nor did we talk about something even more taboo: my mother’s own eyes, and the idea that I inherited my vision problems from her. Mom functioned through most of her life with one poorly working eye that nobody wanted to admit was rapidly getting worse. As a child, I somehow never connected the fact that I had the only mom in all of suburbia who didn’t drive with my friends’ questions about why her eyes were different colors. Because Mom didn’t wear glasses and Dad did, I grew up believing that he was the one with eye problems. To be fair, we had many enablers to help construct a comfortable, dishonest world. Because blindness induces so much fear in everyone, friends, teachers, store clerks and even ophthalmologists colluded to turn my mother and me into people who appeared to have far better vision. At a young age, I’d memorized the seldom-changing eye chart so I could perform better on eye exams. I hadn’t set out to deceive anyone; I simply wanted to make people happy because they acted so pleased when I improved. So when I’d told her about the Colorado Center for the Blind program all these years later, she said: “But, Cath, you never needed a blind school before. You’ve even been teaching college!” Then, with concern in her voice, she asked,

“Has something changed, baby?”

I struggled to find words. Yes, things had been changing. But it wasn’t about what my eyes weren’t seeing; it was about how I was coming to see myself. After decades of pretending to be someone with decent eyesight, I was at last ready to confront this blindness that always hovered at the edges of my world. Skiing with a blindfold was just the beginning.

I’d like to say we were finally able to speak about this freely, but families being families, we never did. I wish we were able to have chided each other for allowing stigma to pull the wool over our eyes (pun intended!) for so many years. We might have bonded over how much work it takes to spend day after day pretending to see the world just like everyone else. We might have even credited our poor eyesight for giving us a fresh perspective on things that fully sighted people take for granted. Imagine swapping stories about how we coped, about absurd situations, about how we made alternative sense of the world! But, honestly, I didn’t need my mother to do this. Growing up before disability rights and with a mother who berated her for being flawed, my mom had perfected her own strategies and blazed her own trail. Surely, she faced self-doubt and pushed past both her own fears and those of others. She cultivated nonconformity and invented tools to deal with having to give up a career in New York City in order to be a good wife hauling kids and groceries on a bicycle in suburbia. In the face of such love and courage, who am I to insist she add embracing blindness to the mix? When at last my ski guide told me the chairlift had reached the top, I was surprisingly calm. I even imagined taking Mom skiing to thank her for the inner strength and audacity that led me to the top of that mountain in the first place.

Then again, she was right there, just as she has been all along.

Catherine Kudlick (right) stands with her mother (left)

Tags:

Disability Commentary

Opinion

The New York TImes

Longmore Institute Director's NY Times Op-ed: The Price of 'Disability Denial'

Visitor — Wed, 24 May 2017 19:39:44 +0000

By: Catherine Kudlick

The following piece is cross-posted from the New York Times Op-Eds; see the original post here.

It was 1989 and I was immersed in my first teaching job, a one-year gig at Barnard College, with the possibility of something long-term. During that time, I had become friendly with a senior colleague named Bill. On our many walks along Broadway to grab deli sandwiches, we’d talked about our grad school days at Berkeley, the high rent of tiny apartments in New York and how to get the Barnard women to share our passion for European history in the small classes they’d asked me to teach.

One morning outside his office something felt off. Bill, who would be part of the team deciding whether to hire me, seemed nervous. Then he came out with it: “I’m wondering if you’d be able to guest lecture in my 100-person western civ class.” As I took this in, he added, “It’s part of, um, your interview for getting a permanent job here.”

I always knew my day at the podium would come. In fact, on one of our walks I’d asked Bill for advice about teaching larger classes. I told him about the details of my lifelong vision impairment and of my terror of public speaking, and asked about how I’d deal with calling on students when I couldn’t see them. In smaller classes, I learned quickly where people sat, and the give-and-take of conversation told me who was engaged. But applying this to more than 30 people seemed overwhelming.

I have nystagmus, a condition in which involuntary, jumpy movement of my eye muscles makes it difficult to focus, a chore that constantly challenges my brain as it frantically tries to keep up. As a child, my thick bifocal glasses and lack of confidence made me the brunt of cruel names and pranks, like being surrounded by kids who threw things on the ground and forced me to look for them. Later there were awkward, sometimes hostile encounters with potential landlords, dates and employers who I tried to brush off as a few gross kids who never grew up.

It had been a huge step to “come out” to Bill about the lifelong vision impairment that I thought I could hide. Starting in a new place with my doctorate safely in hand seemed like the perfect time to try on a new identity, one where I could be more upfront with others — and with myself — about what I could and could not see.

I remember the door frame with its chipped paint, Bill’s messy desk, the scuffed linoleum, the fluorescent lights that made us both ghastly as we stood on the threshold. I imagine an old clock ticking in the background. A soft, cracking voice — mine but not mine — finally broke the silence: “Is this something all job candidates have to do?”

“Um, well uh, no. It’s just that there’s, uh, concerns we don’t have about other candidates, about how you’d handle a large class, you know, because of your … well, you know.”

Of course I knew. At the same time, I didn’t want to know.

I paused, sensing that whatever I said next could destroy my chances for this job, and even future ones.

“I won’t do something that nobody else is required to do,” I said at last with a quiet force that surprised me. It was my first awareness of a visceral complicity between my body’s memory and my soul’s need to cry out — a feeling that one day I’d call conviction.

“I’m disappointed,” Bill said, “but of course it’s up to you.”

All at once, my nystagmus was on a rampage, not just in my eyes but throughout my body, from the hair on the back of my neck to my toes digging into the front of my shoes. I’m frozen. I’m tangled. I’m powerful from the force of it, oblivious and achingly hyper-aware. I want to vomit. I want to lash out. I want to run screaming.

Bracing against the door frame, I wondered how much of this was apparent to Bill. I said nothing, even as words formed: This is betrayal. This is wrong. This is discrimination.

It’s a painful revelation. The mind and the body fuse into one ugly knot of humiliation, anger, fear, doubt. You’re at this crossroads: You can suck it up and carry on as before. Or you can fight back.

All this happened the year before the Americans With Disabilities Act was passed. One of the little-recognized side effects of disability denial is that it inhibits the firing of the synapses that enables people to think of themselves as having rights. In other words, I was still many years away from believing that laws like the A.D.A., or any precursors that were in effect, applied to me.

But Bill and I — like most people around us and too many Barnards then and now — had been brainwashed in the same well-meaning society that still fails disabled people. We sat through tear-jerking movies where helpless blind girls groped and stumbled. Our heartstrings were pulled by fund-raisers showing blindness at its worst to raise money for cures that could be many years away. Images like these isolate people with disabilities not just from society but also from one another.

Though I am not fully blind, my vision impairment, and the challenges it presents, has made me particularly attuned to how others perceive blind people. Our words equate blindness with being out of control and clueless — phrases like “love is blind,” “blind rage,” “blind to the possibilities,” to “blindly carry on.” Such ideas slip quietly into our souls. They find their way onto playgrounds and into news stories, and before long they’re floating inside and outside of doctor’s offices, in sports competitions, film studios, policy debates. And in job interviews.

For the decade after Barnard it would be three steps forward, two steps back: a therapist who helped me ask if I’d rather imagine myself as an incompetent sighted person or a competent blind one; finding an exciting research topic in the history of blind people; discovering I’m a real ham when it comes to lecturing — the bigger the crowd the better.

But at my core I remained haunted and hurting. I couldn’t find a healing way to tell the Barnard story: Either every little detail poured out in a frightening rant or I clammed up, wondering if I really wasn’t qualified after all. Even as I researched and learned more about blind people’s history, I did everything I could to avoid being seen as “one of them.” Using a magnifier in public mortified me as much as the white cane I shoved into the back of my closet.

Then one day I met Bryan, a dynamic blind guy on the other coast who was several steps ahead of me on the journey. Each intense phone conversation upended years of denial and self-loathing. A wall I’d unknowingly constructed between me and the world began to crumble as I found strength and beauty in places I’d assumed to be off-limits.

He introduced me to the National Federation of the Blind’s Kernel Books, matter-of-fact stories told by blind people explaining how they did things nobody thought they could do: babysit, barbecue, teach. Each concluded that blindness isn’t the real problem; society’s responses to it is. Reading the first few, I began to sob uncontrollably. I had spent my life avoiding blind people, and in these pages I met scores of them living life with dignity. Now I was open to anything or anyone who would actively challenge my self-imposed limitations by encouraging me to embark on exciting adventures.

If Bill were still alive, I’d strut up to him with my white cane and proudly lead him to “Patient No More: People W ith Disabilities Securing Civil Rights,” the disability history exhibition I spearheaded. I would take him to the yearly Superfest International Disability Film Festival that my organization co-hosts with Lighthouse for the Blind and Visually Impaired in San Francisco to experience real camaraderie among disabled people and our allies. At both he’d discover captions and audio descriptions that he’d appreciate as someone entering old age.

Future Bills and Cathys need more fresh ideas like these about disabled people. Once freed from prejudice and shame, they can teach the largest class of all — society — to imagine people with disabilities as innovators, problem-solvers and true agents for change.

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Americans with Disabilities Act

Catherine Kudlick

disability history

education

LightHouse for the Blind and Visually Impaired

op ed

Patient No More

Superfest: International Disability Film Festival

Uncategorized

“Save Changes”: Telling Stories of Disability Protest (via Nursing Clio blog)

Visitor — Wed, 05 Apr 2017 18:06:21 +0000

This is a cross-post from the Nursing Clio blog originally posted here.

By: Catherine Kudlick

At first, it was a simple case of “if you can’t beat ‘em, join ‘em,” as I worked with WikiEducation Foundation to teach a methods course in which students created disability history content. But the more I learned, the more it became clear that we were engaging in multiple forms of protest, especially once I began working on my own contribution.

My past warnings to students not to rely on content created by the crowd were perhaps a vestige of anxieties that had led authorities to suppress Wikipedia’s precursor, L’Encyclopédie in the decades leading up to the French Revolution. Its impresario, the Enlightenment thinker Denis Diderot, had already been imprisoned for challenging established knowledge.

Diderot would have been pleased by Wikipedia’s mission, “to bring about a world in which every single human being can freely share in the sum of all knowledge,” at the same time that he would recognize its flaws. Most editors are young white men who, consciously or unconsciously, ignore those on the margins. And Wikipedia’s “notability” requirement (“significant coverage in reliable sources that are independent of the subject”) inherently favors information from establishment sources. Such rules reinforce existing ideas about which topics merit coverage.

My class faced real challenges. First there’s a daunting set of Wikipedia codes and hierarchies. And I was surprised to discover that even a generation weaned on social media fretted about public feedback from strangers.

Then there was the focus on disability history. A field that began to coalesce around 2000, it seeks to expand thinking about a group that makes up nearly one fifth of the US population today. Unfortunately, a prevailing belief that disability is a static biological condition prevents most from understanding it as something shaped by society and culture much like race, gender, class, and sexual identity. At the beginning of my disability history courses, I tell students that they’re on the cutting edge of history, much like those a generation ago who learned about women’s history and the history of African Americans.

I told this class that they were making history by writing it.

Pointing out that history has a history, I invited them to consider how putting a group in context can combat prejudice and stigma. An entry that tells the story of your people on the world’s seventh most visited website can’t help but catapult you from being an individual struggling alone to being part of something far bigger. With belonging comes a sense of pride, a sense of having something to contribute.

Learning along with my class, I wrote an article on the longest nonviolent occupation of a federal building in US history, the “Section 504 protest” in April 1977. Through an exhibit called “Patient No More: People with Disabilities Securing Civil Rights,” I’d helped bring this little-known disability Stonewall to life. The successful month-long occupation by over one hundred disabled people and their allies would pave the way for the Americans with Disabilities Act (ADA).

HEW employee Bruce Lee posted a sign, reading “504 is law now make it reality,” in his office supporting Section 504 during the protest. (Photograph by HolLynn D’Lil)

Four years before the protests, congressional staffers had slipped anti-discrimination language from the Civil Rights Act of 1964 into a vocational rehabilitation bill that was up for reauthorization. This countered views of “the disabled” as pitiful wards of charity. Rights included making public spaces accessible to people in wheelchairs and mainstream education open to qualified students with disabilities. This “Section 504” applied to nearly all public spaces, including government offices, universities, schools, hospitals, and transportation systems.

Disability activists understood 504 as their bill of rights that still needed one signature from the Secretary of the Department of Health, Education, and Welfare (HEW) in order to be put into effect. Worried about costs, officials from the Nixon, Ford, and the newly-elected Carter administrations had stalled. After four years of trying every legal channel, activists snapped. On April 5, 1977 people with disabilities took to the streets in cities with regional HEW offices. Almost everywhere protests were either cut off or fizzled.

In San Francisco things were different. With little warning, over 100 people streamed into the Federal Building and refused to leave for nearly a month.

504 protesters occupied the HEW offices at 50 United Nations Plaza, making them the headquarters of the “Section 504 Emergency Coalition.” (Photograph by HolLynn D’Lil)

The protests succeeded in part because of the Bay Area’s unique climate. Since the 1960s disabled people had been drawn to the rich mosaic of minorities who challenged the status quo: gay men and lesbians, students, artists, and practitioners of new religions, all that included people with disabilities. Decent weather made it easier to participate in antiwar protests, civil rights demonstrations, and the Free Speech Movement gathering momentum at UC Berkeley. In this electrifying environment disabled individuals came to think of themselves as people with rights, while putting them in touch with potential supporters.

The 504 occupation also succeeded because savvy organizers, including Kitty Cone, Judy Heumann, and others, had spent years cultivating relationships and building coalitions. In addition to galvanizing disabled people themselves, they had educated politicians. Mayor George Moscone helped with portable showers while Congressmen Phil Burton and George Miller had the 4th floor of the federal building declared a temporary “satellite office of congress,” a theatrical stunt that allowed them to hold a public hearing about the protesters’ concerns to garner media attention. City officials allowed hundreds of people to gather each day on Civic Center Plaza below to cheer on the occupiers.

The protest also enjoyed wide support from local community groups. In line with its popular food programs, the Black Panther Party brought in hot meals for all 100+ occupiers, including BPP members Brad Lomax and his attendant Chuck Jackson.

Protesters gathered in front of City Hall in support of the 504 occupiers. (Photograph by HolLynn D’Lil)

And the disabled people inside risked their jobs and even their lives to be there. Amidst office furniture, people from different races, social classes, and with a variety of disabilities and their allies created a makeshift society. Some were seasoned protesters while others had never slept away from home before. Spending so many hours together forged cross-disability coalitions rooted in true interdependence — such as when someone who couldn’t speak could dial a phone so that someone without use of her hands could make a call. Just like in any community, there was bickering and intrigue and romance, but here there was also a sense of purpose and a political awakening.

I teared up as I hit the “save changes” that would make this story public on Wikipedia for the first time, knowing a hard-fought victory was now part of electronic history and of course up for grabs.

But how permanent is it? Even before the November 8 election ushered in an era ever more hostile to minority rights, I sensed something like 504 would now be hard to pull off. Everyone is on guard, literally and figuratively, in a national climate of building walls rather than alliances.

I imagined my students hitting “save changes” buttons of their own. Future activism will likely be about occupying virtual spaces and other tactics we can’t yet imagine. History inspires us and the next generations to take heart that the seemingly most disenfranchised can — in the words of 504’s Kitty Cone — “wage a struggle at the highest levels of power and win.”

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The Universal Benefits of Disability Culture: Difference Keeps the Edges Sharp

Visitor — Tue, 24 Jan 2017 23:29:30 +0000

The following article appeared in The Special EDge Magazine (Volume 30, no. 1; Autumn-Winter 2016-2017).

By: Mary Grady Superfest: International Disability Film Festival (pictured above) showcases disability culture through film.

"Disability is an unexpected gift.”

This conviction reflects the spirit and direction of the work of Catherine Kudlick, professor of history at San Francisco State University and director of the Paul Longmore Institute on Disability. Legally blind, Kudlick comes to her work with “knowledge and experience of the world of disability. I was fully formed and nurtured in California public schools and universities,” she said in an interview, describing herself as “the product of special education . . . from the late 60s and early 70s. Since then, things have changed and things haven’t changed. My teachers were a mixed bag. Some were great, and others were terrible because of the low expectations they had for me. They didn’t see me for who I was. They saw the label and the thick glasses.” But Kudlick doesn’t seem interested in dwelling on any less-than-perfect part of her K–12 education. And she’s certainly not complaining about living with a vision impairment, despite the fact that her life has been a routine round of surgeries to restore and maintain the 20-percent of typical vision that she currently has. In fact she has taken the opposite tack and through the institute has become an advocate for Disability Culture....

Read the full article as a PDF here: disability_culture_thespecialedge_fall-winter2017

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Institute Director Kudlick: The Chronicle for Higher Ed's accessibility doesn't make the grade

Visitor — Wed, 28 Sep 2016 21:22:33 +0000

The following letter to the editor appeared in The Chronicle of Higher Education on Sept. 28, 2016.

To the Editor:

Kudos for introducing disability as a viable diversity topic! I was pleased to read about a number of different situations and perspectives (Special Report: Diversity in Academe: Disability on Campus, The Chronicle, September 18).

I found it worrisome however how The Chronicle failed to model access in the very articles that talked about accessibility. Case in point: “DeafSpace by Design” should include audio description. And for the record, your iPad app still isn’t accessible to the device’s built-in screen-reading software. It would be great if The Chronicle could model access in everything it does (even when it isn’t related to disability) now that the articles it promotes show how access brings value.

Catherine Kudlick
Professor of History
Director, Paul K. Longmore Institute on Disability
San Francisco State University

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accessibility

Catherine Kudlick

education

The Chronicle of Higher Education

Uncategorized

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

White Canes, Red Carpet

Visitor — Fri, 11 Dec 2015 18:24:08 +0000

By: Catherine Kudlick

Last night, we attended a wonderful event: Pixar's "White Canes, Red Carpet," co-hosted by Guide Dogs for the Blind, The Blind Babies Foundation, and SF LightHouse for the Blind and Vision Impaired. The screening of their new film, The Good Dinosaur, included the debut of a new audio description app. The audio description was excellent: an app that you download and then listened to on your own device. May this be the future, but hopefully with a single app for all theaters or one that disappears after a screening rather than the predictable, American free-market scenario of needing to download a different app for every company. Thank you Pixar, Disney, and SF Lighthouse! The future looks promising for blind and low vision movie-goers!

At the end, the blind organizations gave Pixar a 6-inch replica of the little green dinosaur Arlo with a tiny white cane, glasses, and service dog.

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Catherine Kudlick

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White Canes Red Carpet

Oral Histories

Visitor — Tue, 17 Nov 2015 18:05:47 +0000

By: Catherine Kudlick

From the beginning, the plan for oral history videos, embedded in the exhibit, excited us, and sometimes carried us through when other parts of “Patient No More” seemed stalled. When we met people like Dennis Billups who had held his story for years wondering if anyone would care about what a black blind man - “504’s chief morale officer” - had contributed, it sunk in that we had not only pushed open a door but also helped to heal a wound. Soon everything rushed in. We laughed, we cried, we wondered in the most visceral way what it meant to write history and how many other stories might never be told. We felt a sense of urgency, not just because we had a deadline, but also because we knew that some of the occupiers were in fragile health.

Getting San Francisco State students in Journalism and History involved added another layer, especially when they made connections with the occupiers, many of them the same age in 1977 as the students interviewing them in 2014. Justin Steinberg, a history student with a vision impairment and a musician, was thrilled to interview performer Jeff Moyer on Skype.

The first challenge was finding as many people as we could. Some were easy: organizers Judy Heumann and Kitty Cone had extensive interviews in the Bancroft Library at UC Berkeley. We also had high profile people like Congressman George Miller and Elaine Brown, leader of the Black Panther Party at the time.

Others required real detective work, following leads, deciding which rumors were outrageous vs which were true. We cheered when we found Ron Washington, a gay black man who we’d seen in lots of 504 photos but who seemed to have vanished. Apparently our postings on every discussion list we could think of, to people to spread the word among friends, outreach to local churches and various Independent Living Centers paid off. Once we'd even heard confident pronouncements that someone had died only to receive a call from that person the very next day.

We have an incomplete roster, a snapshot really. Not everyone we *did* find wanted to talk. Some said they had nothing to say, others claimed they’d already said it all. And even now we meet people who say they were there but we reached them too late to include.

We hoped to get at the nitty-gritty of daily life occupying a government building for 26 days. After initial claims of remembering nothing and having little to add, most interviewees relished the chance to talk on camera. We discovered how Bonnie Regina used an orange juice can to bathe and organizer Judy Heumann’s cherished moments of quiet in an unused elevator. The more than fifty hours of interviews reveal everything from mind-numbing boredom to profound personal transformation.

But we also wanted the 504 participants to engage today’s students, both those who would be interviewing them, and those who would watch/listen. We asked everyone what they wanted future disability rights activists to know, what work they felt still needed to be done.

Once the interviews were complete, we had students transcribe them, then curator Fran Osborn, Associate Director Emily Beitiks, Grad Assistants Renee Starowicz and Katie Murphy, and Director (Me) read through to code them, looking for the juiciest quotes and how they intersected with the emerging themes for the “Patient No More” exhibit stations. Emily then wove the best of the best together into stories that SFSU Journalism graduate Mike Cheng edited into videos.

Forty interviews and almost forty years later, we have a sense of an occupation where few could agree on who actually took part or how long they stayed. There’s something freeing, even nostalgic about this fluidity at a time with informal record- keeping and a certain innocence, at least as far as disability activism was concerned. It was a rare moment when politicians, activists, and even workers in the federal building (including guards!) seemed to have all the time in the world to work together to make the world a better place.

To watch the videos, check out the virtual exhibit at PatientNoMore.org

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