Subversive Access: Disability History Goes Public in the United States

By Catherine Kudlick
(Paul K. Longmore Institute on Disability, San Francisco State University)

In summer 2015, the Paul K. Longmore Institute on Disability at San Francisco State University mounted an interactive, multi-media exhibit “Patient No More: People with Disabilities Securing Civil Rights". We faced several daunting challenges that ultimately made our installation like no other. In fact, we have been sharing our process with museum professionals and continue to learn as we go.

First, the story itself: on April 5, 1977, more than 100 Americans with and without disabilities began a twenty-six day occupation of San Francisco’s Federal Building to insist on getting civil rights. Four years earlier, Section 504 of the Rehabilitation Act of 1973 made it illegal for any facilities or programs funded by the national government to discriminate against disabled people. One official’s signature stood in the way of the law taking effect. After four years of waiting, a coalition made up people with different disabilities launched protests across the country. San Francisco’s occupation proved the most involved and successful. In fact, thanks to support from local community groups like the Black Panther Party, Glide Memorial Church, the Gay Men’s Butterfly Brigade, as well as local and national politicians, it remains the longest unarmed take-over of a federal building in US history. The occupation itself and subsequent victory gave birth to a national disability rights movement and helped pave the way for passing Americans with Disabilities Act (ADA) thirteen years later in 1990.

1977 disability protests in San Fransisco
1977 disability protests in San Fransisco. Photographed by Anthony Tusler ©

From the beginning we knew that telling the story itself needed to be interwoven with innovative forms of access. Put another way, as we progressed, we increasingly appreciated how in many respects these features quite literally embodied the historical content of our exhibit. The Ed Roberts Campus (ERC) offered an exciting, if truly daunting canvas for “Patient No More.” The ERC is located across the bay from San Francisco in Berkeley, where it houses many disability organizations and services. Opened to much acclaim in 2011, the universally-designed building was the architectural embodiment of what disability rights activists had been fighting for since the 1960s. Following the theory of “build it in, don’t bolt it on,” designers tried to anticipate the full array of different people with disabilities who would want to use it, from wheelchair riders to blind and deaf people to autistic people. They thought of nearly everything: a giant ramp, floor texture, natural lighting, a fountain to provide audible location cues, restroom stalls big enough for everyone, automatic doors, and more.

The ERC’s fluid layout, limited number of electrical outlets, need for us to easily move the exhibit kiosks in and out so they could hold public events added yet another layer. And we had limited funds. Meeting these fascinating challenges by building them into our process and design from the outset ultimately introduced opportunities to create a public history exhibit like no other and even to introduce elements of playfulness for visitors.

So, just like the enterprising disabled person faced with an environment designed with other body types in mind, we gravitated to the parts of the Ed Roberts Campus that did work for us and designed the exhibit to fit accordingly. We clustered kiosks around power outlets and came up with a story told through themes rather than chronology so a visitor could start anywhere and circle back. Everything could pivot on casters and be tucked away.

One of the most striking features of our exhibit was a 70-foot mural that depicted the protests. The wall above the iconic Ed Roberts Campus red ramp was an intimidating blank canvas. We spent hours trying to decide which photos to include, what sizes, what story to tell. Our challenge became even clearer as we debated how to deal with access for people who couldn’t see it. Standard practice would have been to label each photo in some way (“Top row, photo 1,” “Second row, photo 1” etc.). Of course we did provide a Braille binder and the audio description tracks that we provided online also contained that information. But this struck us as unsatisfying and dull, at least if it was our only attempt to render the images non-visually. We needed to find something that would be true to our mission to incorporate access to everything in our exhibit, though not necessarily in the same way for everyone.

Our solution: commission two poets who identified as people with disabilities to respond creatively with sound poems. Their interventions added another dimension to the mural while resulting in something completely different, especially since we didn’t insist the poets provide description. But this raised a further challenge for Deaf visitors wouldn’t be able to hear the recordings. Thus we hired an ASL interpreter with a reputation for interpreting songs and poetry. And of course we provided captions too.

We also used Braille innovatively. Few museum access professionals appreciate ways that the tactile reading system does and doesn’t work. They think of it visually rather than spatially and tactually; too often Braille labels appear where they look best or at least where they won’t “get in the way” of the item (assuming there is Braille at all) rather than where a blind person might actually find it. Including Braille in our exhibit design from the beginning, we built what we called a “Braille rail” that was the same central place on each exhibit panel. Our curator/exhibit designer planned every kiosk so that the rail became a unifying design feature that helped organize the distribution of images and text. And the square casing could hide lots of wires that powered our video monitors. At the last minute, as we were installing the exhibit, we discovered that wheelchair users were put off by this feature because they couldn’t tell what it was, and assumed there was something beyond reach on these seemingly useless counters. We rushed to add the words “Braille rail” (in print and Braille) for each kiosk, and everyone quickly understood.

Our most audacious flourish was to include what I called “subversive dots” to the rails – i.e., some additional information so that blind Braille readers could enlighten their sighted friends. We let news of this spread by word of mouth and mentioned it on tours of the exhibit for blind people, who were delighted. A few sighted people were perplexed; our explanation that it gave blind people a rare chance to be experts at an exhibit gave everyone food for thought.

From the experience of “Patient No More," I’d like to share three general comments/observations that I hope will provoke public history conversations:
  1. People with disabilities should be integral members of the exhibit team at every level rather than brought in only as consultants or testers at the end; in fact, an exhibit design team should be considered inadequate without at least one or two people with disabilities playing key roles.
  2. Anyone setting up a public history exhibit should imagine the possibility of there being docents with disabilities, including blind docents; this would add an extra dimension to the experience and ultimately make visits more interactive.
  3. Access is a work in progress, so it should be approached s something fluid, evolving, as a source of adventure where some things will inevitably go wrong, but that’s ok; when people are open to it, the dialogue and planning will bring many rewards.
People often recite the modernist credo of form following function, but just maybe for “Patient No More” function followed form. Or at least we complicated that relationship! For those interested: the exhibit will be touring again in 2017 to commemorate the 40th anniversary of the occupation. To learn more visit: www.PatientNoMore.org 

Recommended Citation
Catherine Kudlick (2016): Subversive Access: Disability History Goes Public in the United States. In: Public Disability History 1 (2016) 10.


T4 and public disability history in Sweden

By Matilda Svensson Chowdhury

The boy in the black and white photograph is smiling widely at the camera. He is well-groomed and well-dressed in a white shirt and a dark jacket. His eyes are glistening. This photograph is the first picture in a Swedish exhibition on Aktion T4. Across the boy's chest there’s a turquoise text: “Aktion T4 – on the view of human beings in Nazi Germany”. The boy in the picture is named Robert and a little further in the exhibition, we learn how his mother cunningly was able to could save him from becoming a victim of T4.

Picture of Robert, exhibition on Aktion T4
Picture of Robert, exhibition on Aktion T4

The Living History Forum (The LHF) is a Swedish public authority [myndighet] which, on behalf of the Swedish government, shall “promote work to enhance democracy, tolerance and human rights with special focus on the Holocaust.” It might seem a bit strange to have a public authority working with these issues, but this is the way it has been in Sweden for the last almost 20 years. A large part of the work the LHF is doing is directed at school children and thus there is almost always an educational framing to the produced material, for example in the form of teachers’ guides. One of the first information materials, which was developed already in 1998, was the book “Tell Ye Your Children...”. This book was however intended primarily for an adult audience and came about as a part of the first information campaign, Living History. To date, more than 1.5 million free copies have been distributed in Sweden.


The Portrait of a Sixteenth-Century Disabled Man

By Volker Schönwiese

Gazes at women and men with disabilities from the early modern times up until today – how can they be interpreted scientifically and artistically? A painting from an unknown disabled man from the 16th century that has not been taken notice of until then was the starting point of a participatory and transdisciplinary project in 2005/2006. The portrait is part of the “Kunst- und Wunderkammer” (Cabinet of Arts and Wonders, founded by Archduke Ferdinand II of Austria, Region of the Tyrol [1529-1595]) at Ambras Castle near the city of Innsbruck/ Austria. The Institute of Educational Sciences at the University of Innsbruck, the Museum of Fine Arts (“Kunsthistorisches Museum”) in Vienna with its collection at Ambras Castle and the Centre for Independent Living in Innsbruck were the project partners of this research project. The project´s main goals were the creation and organisation of an exhibition at Ambras Castle and the publication of a scientific anthology with collected articles. Both goals were achieved in cooperation with a reference group of women and men with disabilities. Additionally, a television documentary was created. The participatory approach of the project should finally lead to recommendations for working with reference groups as a way of transdisciplinary participation.

During the duration of the project, two other historical paintings were found that are also significant for the analysis of the cultural representation of disability: a leaflet from 1620 showing Wolfgang Gschaidter, a carpenter with a disability [1] and a small picture from 1578, showing Elizabeth, a woman with a learning disability [2].


Polio Lives - Translating ethnographic text into verbatim theatre

By Sonali Shah

Increasingly, in today’s text-based society, there is a call to adapt and translate academic research into forms that are accessible to a diversity of stakeholders in order to accelerate its impact beyond the academic gates. Such thinking informed the Polio Lives study - a two stage pilot study which explored the potential of interdisciplinary methodologies to exchange and communicate knowledge, about the social history of polio, to different communities in creative ways. The first stage involved conducting five life history interviews with survivors of childhood paralytic polio, contracted during the U.K. polio epidemic in the 1940s and 1950s.  Selected quotes from these transcripts were used to illustrate various points throughout the paper. The second stage of the study involved collaborating with Birds of Paradise theatre company to run two workshops to explore how to tell the story of polio through recorded delivery verbatim methodologies.

For the purposes of the blog, I will omit all the theoretical debates around the use of drama as a tool to educate contemporary audiences about historical diseases which are unfamiliar to them. This can be read about in my journal paper which should be available this year. Instead I urge you to watch the short documentary, Polio Monologues, which explores how the life stories of polio survivors (specifically those with paralytic polio since childhood), collected by a social scientific disability researcher (myself) can be embodied and staged using the verbatim theatre technique recorded delivery.

Recommended Citation
Sonali Shah (2016): Polio Lives - Translating ethnographic text into verbatim theatre. In: Public Disability History 1 (2016) 7.


Favorite TED talks about disability

By Ylva Söderfeldt

TED talks have become a hugely popular forum for public debate. The format consists of brief lectures, around twenty minutes long, presented in an entertaining, provocative, and popular way, to a live audience and openly available online. TED talks address a wide range of topics, from science, politics, and society, to personal stories. Quite a few of them relate to disability, for instance presenting high-tech protheses, or the experiences of disabled athletes. Today, we’ve selected three favorite TED talks on disability:

Alice Dreger, „Is anatomy destiny?“
Dreger is well known for her groundbreaking studies on conjoined twins and intersex. In this talk, she suggests that unusual bodies can teach us something about democracy.

Maysoon Zayid, „I got 99 problems… palsy is just one“
Zayid talks about being at the intersection between racism, sexism, ableism… and comedy!

Mads Ananda Lodahl, „Ending the straight world order“
This talk isn’t about disability at all, but Lodahl talks about how queer studies question the concept of normal, and what the consequences of enforcing normalcy are.
Link to X-Talk

Most TED talks have subtitles and transcripts in several languages and the option to comment and discuss online. Enjoy, and tell us about your favorite TED talks!

Recommended Citation
Ylva Söderfeldt (2016): Favorite TED talks about disability. In: Public Disability History 1 (2016) 6.


Online media representations of the memorial for victims of the National Socialist “euthanasia”

By Robert Parzer
Translation: Ylva Söderfeldt

Workers at the T4 memorial in Berlin. Photo © Robert Parzer.
Workers at the T4 memorial in Berlin. Photo © Robert Parzer.
Public discourse and collective memory have tended to neglect the National Socialist killings of mentally ill and disabled people. Still in the 1990s the position towards victims of the so-called “euthanasia”-programs was defensive, until in the early 2000s the debate surrounding the Berlin Holocaust memorial led to other victimized groups being recognized at the highest political level. This started a process that finally in 2014 led to the inauguration of the memorial for the victims of the National Socialist “euthanasia” killings. The memorial was supported by an exhibition project funded by the German Research Foundation.

Since the practice of “writing onto the internet” has become popular and commonly accepted, different online media have also become platforms for remembering Nazi crimes. However, the murdering of mentally ill and disabled people is an exception that rarely finds its way online. For instance, the Hashtag #Krankenmord [“murder of the sick”, a German term often used for the killings of mentally ill and disabled people under the Nazis] yields less than 1000 results on Instagram, probably the most popular photo platform on the web. Of course, there are exceptions, such as the platform gedenkort-t4.eu or singular projects, among which the highly professional, interdisciplinary and transcultural documentation of a field trip by George-Washington University students is worth mentioning.


Accessible disability history - sharing the past

By Rachael Stamper

In my role as heritage project manager at Queen Elizabeth’s Foundation for Disabled People, a disability charity based in Surrey, UK, I have been exploring how to make disability history more accessible to the general public and for disabled people themselves.

Firstly I would like to talk about a conference I attended at the London Metropolitan Archives in November 2015 titled ‘Disability and Impairment – A Technological Fix?’ The aim of the conference was to share what disability organisations and researchers were doing or with disability history. The conference married together two groups of people, academics and non-academics, and both groups were represented in twelve twenty minute presentations, followed by Q&A sessions.

Academics were present from Lancaster University, The Open University, Langdon Down Museum of Learning Disability, the Wellcome Trust, The National Archives, Yale University, and The University of Exeter. They presented a wide range of topics such as the impact of 20th century computers on people with disabilities, the blind and dead in Victorian Britain 1851 – 1901, and mobility and impairment in the eighteenth century.