Paul K. Longmore Institute on Disability - disability studies

Umeå 3: Interview with a Swedish Crip Queer Femme

Emily Beitiks — Tue, 04 Feb 2020 17:13:39 +0000

The following is an interview with Swedish crip queer femme researcher Christine Bylund who Catherine Kudlick met during her 1-month visiting professorship at Umeå University in early December 2019. Christine provides an insightful and fascinating international perspective.

Christine Bylund in a crip-femme-style-selfie

Catherine Kudlick: Tell me a little bit about you and your relationship to disability

Christine Bylund: I am currently a PhD student in ethnology at Umeå University. I identify as crip and queer femme, and was born with cerebral palsy in 1986. I grew up with my twin brother and my parents in a working class home in rural Sweden. My parents were active in the workers union and when they had two disabled children they took on the social model of disability as a model of understanding disability, power and resources, I was raised with a deeply rooted understanding that disability and marginalisation following it is not a personal flaw but a societal and political issue and that disability rights are human and civil rights.

Growing up, my family was very active in a disability rights-organisation where I met other disabled kids and adults. However, I did not think I would work with any things disability related. For many years I worked (and still do) with performance art, writing and club promoting. My decision to go into academia was based on coming in contact with a Scandinavian field of disability studies which I understood as more or less based on the medical model, there wasn't any research that I knew of which dealt with intersections of disability, ableism, gender and sexuality. I often say that I became an academic out of need, trying to fill a void of crip-theoretically driven research in a Swedish context.

My research deals with connections between the changing welfare state, desire and relationships through a crip-theoretical understanding of ableism, drawing from qualitative research material based on interviews and auto-ethnographic writing. Since 2009 a decrease in support for people with dis/abilities provided by the welfare state has taken place in Sweden. In this process, based on ableist notions, the concept of family and relationships are both overlooked and central. Cuts of support have a great impact on family lives, rendering people with dis/abilities dependent on their partners, parents or children.

However, little previous research has been produced about how the needs, wants and desires of relationships, families and kin-ships for people with dis/abilities have formed from and adapted to the changing conditions of the welfare state. Likewise, in the field of queer theory the role of dis/ability and ableism in the process of forming queer or non-normative relationships and ties of (inter)dependence has often been overlooked. My main question is: For whom has family-life and relationships been presented as a possibility in the different phases of the Swedish welfare state?

Catherine Kudlick: How did you develop an edgy disability consciousness?

Christine Bylund: I think of my crip sense of self as developing in relation to my femme and queer sense of self. Coming in to my 20s, from 2006 and onwards, I did not necessarily have a sense of a crip identity when growing up, despite an understanding disability as a political issue of power and possibilities from my upbringing. I would say that my first entrance into a queer community, mostly built up by people coming from queer disabilty contexts in the US and the UK lead me, online and in person, to people who have been integral to my understanding of gender, sexuality and disability, many of whom I have had the pleasure to work with in different ways. I often think of my coming into claiming crip as happening when I had the pleasure of meeting queer people with whom I could discuss the intersections of ableism/gender and sexuality, often with trans-identified friends and lovers. I also think of my femme eureka moment as being when I read texts on crip femme-inity which felt like coming home to a sense of femininity which I felt ableism had stripped from me, especially the pieces by Leslie Freeman and Peggy Munson in the Femme-thology volumes published by Homofactus press in 2009.

The intersections of queer and crip in my life has brought me to beautiful places with beautiful people both in a private and occupational sense, and I am so grateful for that.

Catherine Kudlick: Abroad, among progressive-thinking people, Sweden has the reputation of being good to people with disabilities. But during my recent stay in Umeå, and from our brief conversation, your research is finding some disturbing results. What do you think American readers should know?

Christine Bylund: I would say that the idea of Swedish exceptionalism is a huge part of the problem when it comes to raising awareness of the issues of oppression and discrimation that disabled people face in a Swedish context. I would like to stress for American readers that Swedish society in general and the Swedish welfare state in particular has a disturbing history of race biology and eugenics, affecting the indigenous Sámi population, ethnic minorities and disabled people in particular. Sweden has an almost 100 year long period of institutionalisation of disabled people, coming to an end only in the 1980’s. Along the same lines the right to vote was only granted people with intellectual disabilities in 1989.

Perhaps I would also like to stress the disability rights we have seen in Sweden, such as the personal assistance reform was not something graciously given by the Swedish but something constructed and lobbied for by the Swedish Independent living-movement.

However, I would say that Swedish welfare state can, when it is running as intended, safeguard both human and citizen rights in a just manner, in comparison to other countries, such as the USA. Ableism permeates any society and in a Swedish sense it shows itself in the discrepancy of how disabled children and disabled adults are treated.

Catherine Kudlick: How do you define “austerity” in the Swedish context? How does it compare with other places you know about, such as the UK and USA?

Christine Bylund: I would say one of the biggest differences lies in the sublimity of the Swedish austerity, not in its effects but in the way it has been carried out. We have seldom had direct cuts by the state and government, rather the change has been taking place in a legal and bureaucratic field where the concepts of who is and isn’t eligible for certain types of supports has altered one bureaucratic definition at a time, altering the legal spaces so that thousands of people have been kicked out of the welfare state support systems. This brings us to a truly kafkaesque situation where for example personal assistance with breathing devices was not considered a basic need (ie breathing is not understood as a basic need) granting support and service. In these situations, the government has said that nothing has been altered in the actual text of the law — which intentions still is to grant independence and equal living conditions — despite disabled people and disability rights organisations proving again and again the detrimental effects of such bureaucratic decisions . Despite massive critique from both the UN and the EU the Swedish state continues to dismantle the welfare state supports for disabled people whilst boating about its exceptionalism to other countries.

Catherine Kudlick: While in Umeå, I visited the exhibit at the Women’s Museum, which weaves disability activism into other forms of marginality and activism. I was pleased to find some playfulness such as the “Normaldemokraterna” and the mock sex education campaign. Have you been part of this? What do you think Americans could learn from it? What do you like about it, and do you think it has had an impact?

Christine Bylund: The campaigns you saw at the Women’s Museum have been produced by the Gothenburg Independent Living Cooperation (GIL). Sadly I have not taken part in any of them but enjoy their playfulness as well as their powerful ways of demasking how ableisms works in a Swedish contex. They have also done a few civil disobedience acts such as, intently breaking the one-wheel-chair-rule on the trams of the city by occupying them and turning one of Gothenburg's biggest parking lots into a disabled parking lot only by transforming a van so that it spray painted a wheelchair symbol on all the slots. The use of civil disobedience was a common tool for disability rights activist in the late 90s and early 00s as well.

However, I also know that some of the campaigns which have used the term CP, cerebral palsy (which in Swedish is a slur a par with the R-word in English) in a provocative manner has had some internal questions and the debates inside the disabled community. In the discussions following the campaign some activists with cerebral palsy have expressed feelings of having the stigma of an ableist understanding of the word being reinscribed through the use of the word in this setting. In these cases GIL has often justified their use of the term by expressing their intention of using it in a subversive sense. I am especially interested in the discussion following these campaigns as it shows both the heterogenity and the potential conflicts of interest in the Swedish disability community.

Follow Christine Bylund on Facebook or on Instagram as: @kittinvittamin

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Sweden

Queer

Femme

Crip Identity

disability studies

Umea University

An Interview with Mia Mingus: 2017 Longmore Lecturer

Visitor — Thu, 26 Jan 2017 19:45:54 +0000

In anticipation of the upcoming Longmore Lecture in Disability Studies, Associate Director Emily Beitiks interviewed this year's speaker, Mia Mingus, who will present on "Access Intimacy, Interdependence, and Disability Justice" and the importance of making connections and building relationships with those who understand, help meet, and make efforts to achieve disabled people's access needs. Mingus is a community organizer and national social justice leader, a queer, physically disabled, Korean, transracial woman and transnational adoptee.

The Longmore Lecture will be held Tuesday, February 7th in the J. Paul Leonard Library (SFSU campus), room 121, from 5-7pm; for more information, see the event page here and please rsvp by January 27! Emily Beitiks: You'll be talking about "Access Intimacy, Interdependence, and Disability Justice" at the Longmore Lecture. Why are you choosing to focus on this topic?

Mia Mingus: I am choosing to focus on these because I think they are a crucial part of disability justice that we will need if disabled people will ever be free. I chose these because I notice how they have a huge impact on my daily life. As I wrote in "Feeling the Weight: Some Beginning Notes on Disability, Access and Love,""These are the parts of disability justice and liberation that keep me up at night, that have hurt more than any ableist remark, that have left more scars than any surgery. This is the underbelly of ableism. This is what I fear we will be left to wrestle with after every building is made accessible and every important policy is passed." These are the pieces of disability justice that often get overlooked and undervalued.

EB: The goal of the annual Longmore Lecture is to feature a speaker who continues Paul Longmore's legacy of scholar-activism. How do you feel about us giving you that label? Does that resonate with your approach?

MM: I don't think of myself as a scholar, though I appreciate that folks would think of me that way. Really, I just started writing the writing I was looking and longing for and couldn't find. I wrote to save my own life in a way and in doing so, ended up finding others like me and helped to forward a framework that continues to grow today. I wrote to leave evidence for others like me who were also looking and longing for an approach to disability that was not single-issue and that was...for lack of a better word--human. I wanted writing on disability that didn't just speak to the facts or statistics or policy, but that spoke to the whole experience of disability: the messiness, the pride, the isolation, the invisibility, the pity, the love, the struggle and the magnificence. I wanted writing that could make me feel, not just think.

EB: We lined you up for this lecture months ago. Now, we are seeing a dramatically different political climate and your work will be more valuable than ever. What impact has this had on the way you approach your work, if any?

MM: Much of my work has been building alternatives, specifically building transformative justice responses to violence within our own communities. This work is vital to our past, current and future political realities because if we don't build alternatives at the same time we are resisting, then we are only resisting--hamsters on a permanent wheel. It is not sustainable and building alternatives helps us actually build the world we long for, rather than only just rejecting the world we don't want. And I want to be clear that both resistance and alternatives are absolutely important and are deeply connected, yet distinct from one another--and they are also not mutually exclusive. If this current political climate teaches us anything, even in just the first handful of days under this new administration, it is that we need to build alternatives to our current systems because it has been made abundantly clear that they are not made for us, by us and in many cases, are actively working to erase us. I think about this for disability and how we will build alternatives to institutionalization and incarceration, since this is where so many disabled people are. What will it take for us to build the kind of communities, relationships and world where disabled people do not have to be so dependent on or ensnarled by the state or the medical industrial complex? I want us to not only focus on things like the ACA--critically important work--or specific policies and budget cuts, but to also use this moment to really think about where we want to go as a people and what we're fighting for and building, not only what we're resisting and fighting against. If anything this current political climate has deepened my commitment and determination to my work and the role it plays in supporting all the amazing and inspiring mass-resistance and direct actions we have been witnessing.

EB: What have you read or who have you met recently that you're really excited about?

MM: Lately, I have been struggling just to keep up with the never-ending cycle of news and work every day.

EB: We work with a lot of students on campus who have disabilities. What do you wish you'd known when you were in their position?

MM: Wish I had known that there was a vibrant network of queer disabled people of color out there. I wish I had known that, no matter what anyone tells you, disability and ableism are important political pieces to the work of liberation. That ableism, though often overlooked, is a key part of how oppression--all oppression--functions and that our experiences as disabled people are valuable and unequivocally political. It means something to be disabled. And I wish I hadn't wasted so much time waiting for someone else to create the thing I needed, when I know now that we can and must create what we need with what we have. We are the ones we have been waiting for.

Learn more from Mia on Tuesday, Feb 7. Visit the event page now!

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Introducing, our new WikiPedian: Jackie Koerner!

Visitor — Thu, 08 Dec 2016 20:07:25 +0000

We had previously posted about a search for a WikiPedian, and now we have one! Image Courtesy of Jackie's blog Jackie Koerner completed her PhD at Saint Louis University in Higher Education in August 2016, where she wrote a dissertation titled, “An exploration of the lived experiences of college students with disabilities.” She is passionate about disability, education, and the free knowledge movement.

When not tackling education questions, you can find her rescuing furry friends, at the gym, or in a suburb of St. Louis where she lives with her husband, daughters, and clan/flock/pack of rescued pets. -- We are eager to get her work started, so if you have noted any problematic disability entries, let us know, either in the comments or via email (pklinst@sfsu.edu). Image courtesy of Jackie's blog

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Longmore Institute Seeking Disability Studies WikiPedian

Visitor — Thu, 29 Sep 2016 20:35:55 +0000

This post is cross-posted from the Wiki Education Foundation site; view the original here. By Ryan McGrady on September 29, 2016. Definitions of disability are often cast in medical terms. While important, concentrating on that one aspect of a disability-related topic can mean inadequate coverage of other social, cultural, historical, economic, and political aspects. Writing a high-quality Wikipedia article about the subject thus typically means drawing from research in the sciences, but also in the social sciences and humanities. Getting access to those sources, however, can be a challenge for Wikipedia editors, who may run into barriers like paywalls. When Wikipedians can’t access the necessary materials about a subject, articles and perspectives within articles can be neglected.

For that reason, San Francisco State University (SFSU) is opening access to its library resources for a Wikipedian interested in disability studies.

As with other Visiting Scholars positions, the Wikipedians aren’t required to be physically present at the university. The only expectation is that they bring some of the articles they work on in that subject area to B-class or better over the course of a year. For most Wikipedians who would be applying for such a position, that’s the sort of activity they would be doing anyway, but now with access to high-quality research resources.

The opportunity is supported by SFSU’s Paul K. Longmore Institute on Disability, which works to challenge stereotypes and showcase the strength, ingenuity, and originality of disabled people. For Associate Director Emily Smith Beitiks, the Visiting Scholars program is a way to support the Institute’s mission by helping to improve public knowledge about disability on Wikipedia, using the rich resources collected by SFSU to build well-rounded multidisciplinary articles.

If you’re a passionate Wikipedian with an interest in this field, we’d love to help connect you. You can apply for a Visiting Scholar position here and, if you have questions, drop us a line: visitingscholars@wikiedu.org. For more information about the Visiting Scholars program, see the Visiting Scholars section of our website.

Tags:

disability studies

Emily Beitiks

J. Paul Leonard Library

Missed Joshua Miele's Talk at the Longmore Lecture?: Watch it here!

Visitor — Fri, 18 Mar 2016 18:21:51 +0000

The Annual Longmore Lecture in Disability Studies presents Dr. Josh Miele:
"How Access Really Happens: Disability, Technology, and Design Thinking”

March 2, 2016

[youtube https://www.youtube.com/watch?v=QtKf45Oc_8A]

Click here to read a guest post by Joshua Miele on our blog.

Josh Miele Bio:

Dr. Miele is a scientist with over 25 years of experience in developing innovative, information-accessibility solutions for blind people. He has a bachelors degree in physics and a Ph.D. in psychoacoustics from the University of California at Berkeley. As Director of the Description Research and Innovation Lab (DRIL), and Associate Director of the Smith-Kettlewell Rehabilitation Engineering Research Center on Blindness and Low Vision, he leads a team of engineers and scientists dedicated to addressing a wide variety of accessible information challenges in education, employment, and entertainment. His leadership of the DRIL (Formerly the Video Description Research and Development Center) energetically integrates accessibility engineering, education research, psychophysics, disability studies, and other disciplines, applying description technologies and techniques to a universe of information accessibility challenges.

Outside of his professional work at Smith-Kettlewell, Dr. Miele is an active member of the Bay Area’s vibrant disability community. He is a former board member of both the Bay area Outreach and Recreation Program (BORP), and the Ed Roberts Campus (ERC). He is the Immediate Past President of the board of the San Francisco LightHouse for the Blind and Visually Impaired, and is cofounder and Creative Director of LightHouse Labs — a Bay Area think tank which promotes tightening ties between technology innovators and the blind community.

Dr. Miele is the inventor of the Descriptive Video Exchange (DVX), YouDescribe, WearaBraille, Tactile Maps Automated Production (TMAP), the Talking Tactile Pen (TTP), Sonification tools for MATLAB, Virtual Talking Signs, Simulated Sighted Stranger (SSS), and a number of other tools and diversions for blind consumers. He has also made contributions to screen reader technology, computer-vision applications for the blind, haptic exploration research, and disability humor. Dr. Miele lives in Berkeley, California, the City of the Blind.

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LightHouse for the Blind and Visually Impaired

Longmore Lecture

technology

Uncategorized

Dinosaurs are Extinct, but Normalization is Alive and Well

Visitor — Thu, 17 Mar 2016 22:18:32 +0000

My son hugs a stuffed dino.

By: Emily Beitiks

Lately, I've been learning a lot about dinosaurs. Or, I should say, my three-year-old son has been learning a lot about dinosaurs, and I have been caught in the crossfire. My mind is often churning to relate any new information I take in to my own passion of disability studies. I didn’t expect to find a link to dinosaurs... but I did.

Dinosaur science has advanced remarkably since my childhood. (Did you know, for example, that scientists now believe many dinosaurs had feathers?!) But while our notions of what dinosaurs could have been is constantly evolving, we still cling to certain tenets of what I like to call “dinosaur normalization.” (I haven’t lexis-nexis’d it, but I think you just witnessed the birth of a completely original school of academic thought!) Dinosaur normalization is the idea of prescribing what dinosaurs would have been like based on our own narrow worldview. For a quick example of dinosaur normalization, when scientists first discovered the Iguanodon (see left), they assumed he had a rhino-like horn on his nose. After further skeleton discoveries, it turns out the Iguanodon actually has two horn-like thumbs, something we’ve never seen before. But you don’t have to be an obscure dinosaur like the Iguanadon (that only three-year-olds and their parents are likely aware of) to be a victim of dinosaur normalization. Here’s a children’s song about the stegosaurus:

My name is stegosaurus, I’m a funny looking dinosaur…. My front two legs are very short. My back two legs are long. My body’s big, my head is very small I’m put together wrong!

You know... a little judgmental. Plus, if the stegosaurus is “put together wrong,” isn’t that kinda our bad since we literally put them back together? But even the almighty T-Rex is not spared from the hammer of normalization. There's a general fascination with the T-rex's tiny arms, each with two small claws. Many books ask: why did such a ferocious beast have such puny, useless arms? One fictional children's film that I watched recently spent a solid 30 seconds joking at the t-rex's expense. When the newest movie in the Jurassic Park franchise was released, I was itching to see it for it promised a genetically modified dinosaur. I don’t condone genetic modification, but I thought this premise was brilliant, as it would allow the filmmakers to take all the scariest parts of dinosaurs and jam them together (which, inevitably, makes a really strong argument against genetic modification). Much to my surprise (and many other disappointed fans), the resulting dinosaur mostly just looked like a t-rex with longer arms and a full hand of claws. Sure, it had a few other hidden tricks but if you freeze-frame the film, that’s it. It’s as if there were a bunch of dino-fans who were sitting around saying, “I’m not afraid of the t-rex because its got those tiny arms. But if you had a t-rex with proportionate arms, well, now that’d be scary!” There’s so much we are still learning about the t-rex. Scientists are now hypothesizing that the tyrannosaurus rex might not have made the ferocious roar we think of from the movies, but something more like a loud bullfrog croak. There’s also a lot of uncertainty about how fast the t-rex runs. Just yesterday even, an article announced the discovery of a pregnant t-rex, which is providing new data on egg-laying. So why aren’t we culturally more open to exploring what purpose the t-rex’s tiny arms might have served? The paleontologists are, but the children's books and films don't seem to be. The disability rights movement pushes us to rethink our assumptions about how the body is supposed to look and what the body is capable of. Many disabled performance artists celebrate how their bodies are “put together wrong” to show us what the anomalous body can do once you embrace creativity and challenge bodily assumptions (see, for example, the many examples in Sins Invalid's film An Unashamed Claim to Beauty). While the disability movement is pushing us away from normal, our dinosaur education for our kids lags behind. Everything about dinosaurs is so totally not normal. When I stop and think about dinosaurs, the t-rex’s tiny arms and the stegosaurus’s small head seem so completely uninteresting compared to how bizarre it is that there were dinosaurs like this once living in North America: Or knowing that this dinosaur-relative once swam in our oceans…yikes! That our normalizing tendencies have extended to a species from over 65 million years ago shows us just how far our counter-efforts to take down normalcy must also go. I’m going to encourage my kid not to think twice about the t-rex’s small arms. That’s just how they look, and from what we know about the t-rex (his FAVORITE dinosaur), they were pretty bad-ass, small arms or not. *Believe it or not, this is actually the second blog by someone at the Longmore Institute with a connection to dinosaurs. Read the other, about Pixar's access features in The Good Dinosaur, here.

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"How Access Really Happens": The 2016 Longmore Lecture

Visitor — Tue, 08 Mar 2016 00:31:02 +0000

"Real access happens not by asking for permission but by asking for forgiveness after you have done what you need to do" ~Dr. Joshua Miele, 2016 Longmore Lecture guest speaker

By: The Longmore Institute

At this year's annual Longmore Lecture on Wednesday, March 2, we heard from scientist and inventor Joshua Miele, who discussed his take on "how access really happens." Dr. Miele holds a Ph.D. in psychoacoustics from the University of California, Berkeley, and is currently Director of the Description Research and Innovation Lab (DRIL) and Associate Director of the Smith-Kettlewell Rehabilitation Engineering Research Center on Blindness and Low Vision. As noted in an earlier post, Miele has spent nearly 30 years "designing and implementing a wide variety of tools intended to give blind people better access to the information they need to do the things they want to do."

But this talk wasn't about the latest accessible technology. Rather, Miele began by reminding all of us that "disability, accessibility, equality and self-determination connects back with the history and culture of disability." His reigning mantra, which is echoed as a core tenant of the Longmore Institute, is that disability can spark creativity and innovation, and rather than letting everyone else figure out the best way to solve problems for "those people," innovation comes best straight from the source. Dr. Miele shares some musings on the pros and cons of powerpoint presentations for blind speakers.

Miele noted that "there is a big difference between independence and self-determination." He recalled his own journey both professionally and personally on how he was able to progress from adapting, to being in a position to help others. As a physics student, Miele relied on another low-vision scientist Abraham Nemeth's braille code for math and science formulas, along with his own additions. And with ever-increasing access to technologies and ideas, his work continues to figure out "how blind people can build the things that they need to build."

One of his most compelling stories was of a childhood memory in a museum. He recalls his mother describing a display of airplanes, then waiting for a security guard to look away so that he could go under the rope and touch the planes himself as she identified them. Although he wasn't directly suggesting going beyond the ropes in museums (though many museums actually offer touch tours for low-vision visitors now!), he illustrated the point that "Real access happens not by asking for permission but by asking for forgiveness after you have done what you need to do." This year's lecture was informative and entertaining, but also a call to arms to advocate for the access we really need. By working with expert innovators like Miele, we can make access really happen. Missed the lecture? Watch it here!

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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]

Tags:

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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The First Disabled Lego?

Visitor — Fri, 29 Jan 2016 19:27:06 +0000

By: Emily Beitiks

Big news this week, from CNN to the Guardian: Lego has unveiled its first disabled character, a wheelchair rider: Cynically, one might call this "Handicapitalism" by Lego - a commercialization of disability rather than a genuine effort to diversify their characters. But even without questioning intentions (or the value of children who use wheelchairs to be able to play with a Lego with whom they identify), there is a simple factual misrepresentation in this story.

This is NOT the first Lego character with a disability.

There's a hierarchy within disability. Too often, we reduce disability to mean a person in a wheelchair, and we forget the rich array of bodies that are included in disability communities. Also, we fail to see disability when it's associated with a bad-ass hero... instead we expect to see disability in the pitiful and the tragic.

There are at least 5 disabled Lego characters that have been popular for awhile (in addition to the many disabled by mean older siblings or parents who made the painful mistake of stepping on one):

The Pirate

Cathy Kudlick, Director at the Longmore Institute, has long been pointing out to people that we fail to see pirates as the "disability action figures" that they are. With a hook hand, an eye patch, and a peg leg, this guy has a disability trifecta!

2. Luke Skywalker Star Wars fans have long had the option to purchase Luke, pre- and post-amputation. Even with his hand prosthesis, he still is another example of a "disability action figure."

3. Darth Vader Full disclosure: I haven't seen the movies in a long time and my efforts to pin down the exact reason why Darth Vader dies without using his mask to breathe yielded WAY too many results that didn't help. But he counts.

4. Abraham Lincoln While the exact condition is unknown, geneticists and historians believe that Abraham Lincoln had a genetic condition, similar to Marfan syndrome.

5. Daredevil He's blind and uses echolocation to fight bad guys.

And who knows what sort of invisible disabilities these guys might have?

Congrats to Lego for adding a wheelchair riding Lego, even though it is not their first disabled Lego. Now kiddos: build these little fellas some ramps and accessible houses!

*Which Lego characters did I miss? Let me know in the comments section!

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