Old medical records as historical sources - an accessible film

By Bettina Alavi and Eva Franz

Located at the psychiatric clinic in Heidelberg is the internationally known Collection Prinzhorn, in which works of mentally ill artists are archived and exhibited.¹ Its founder, psychiatrist Hans Prinzhorn (1866-1933), laid the foundations for the study of art and art therapy in psychiatric context. From 1910-1921 he was hired by the Heidelberg Psychiatric University Clinic to develop an existing small art collection made by mentally ill persons. His book, "Bildnerei der Geisteskranken" ("Sculpture of the Mentally Ill"), was received by artists such as Max Ernst. Today's scholarly discussion of Prinzhorn's artists, in addition to dealing with the artistic products, also applies to the biography of the patients. The reconstruction of their life stories is based on historical medical records.²

Historical medical records are sources that were primarily written about the patient: the doctor noted symptoms, diagnosis, and treatment. Sometimes there were also letters from relatives. A further part consisted of official documents such as instructions, invoices, etc. Only in exceptional cases were letters, drawings, or pictures by the patient included. Nevertheless, the course of the patient's life can at times be at least partly traced. In addition, they provide insights into the historical background such as the roles of patients and caregivers, as well as insurance issues and much more.

With the demand for inclusion in education and with the development of disability history, the question arises about the provision of adequately prepared knowledge about mental illnesses and their treatment in history. Accessibility for all is an important basic condition: both to the Collection Prinzhorn, and to the materials made for educational purposes in the museum. The accessible preparation of these materials is the focus of a project in history didactics. Teacher training students at the University of Education in Heidelberg created accessible film sequences,³ which elaborate aspects of the history of psychiatry around 1900 in the context of the Collection Prinzhorn for a diverse group.

A product of the project is the film sequence "Alte Krankenakten als Quellen" ("Old medical records as historical sources").⁴ In the section shown here, the notion of historical source is clarified using an example of a medical record. Accessibility is enhanced through linear narration. This narration consists of language and visualization, which additionally structures the section and explains the content. The language is based on an everyday comprehensible vocabulary and follows the rules of Leichte Sprache (German version of Simple English).⁵ The moderation is calm, the articulation is clear. The source work is equated with detective work; a detective is repeatedly used as stylistic means. This visualization loosens the content humorously but not ironically. The lack of background music is intended and mental breaks are built in.

Making a film accessible is more than just methodological adjustments. It demands a deliberate reduction of the complexity of content through didactic elementarization.⁶ This concept is based on theories originated in special education. Leading questions for the process of elementarization are: What are the basic structures of the subject? What do people experience? And what is important from a social perspective? The elaboration of these "elementary structures", "elementary experiences" and "elementary basic principles of life" serve to elucidate the core of the matter.⁷

In the context of history didactics, the film sequence corresponds to the method of inquiry-based learning, as the detective work provides a method of identifying a historical source and shows ways to use it: Asking questions to a historical source is explicated. This is regarded as an important competence on the path to historical awareness.⁸

Recommended Citation:
Bettina Alavi & Eva Franz (2017): Old medical records as historical sources - an accessible film. In: Public Disability History 2 (2017) 4.

Footnotes:
[1] www.prinzhorn.ukl-hd.de/index.php?id=84, visited 2/22/2017.^↩
[2] Fuchs, Petra (2010): "Sei doch dich selbst". Krankenakten als historische Quellen von Subjektivität im Kontext der Disability History. In: Elsbeth Bösl, Anne Klein, Anne Waldschmidt (Hrsg.): Disability History. Konstruktion von Behinderung in der Geschichte. Eine Einführung. Bielefeld, 105-123^↩
[3] Vision Kino gGmbh (Hrsg.) (2013): Praxisleitfaden Inklusion und Film. Methoden, Tipps und Informationen für eine inklusive Filmbildung. Berlin: www.visionkino.de/publikationen/leitfaeden/praxisleitfaden-inklusion-und-film, visited 2/22/2017. ^↩
[4] The film was made by Anna Güse and Alena Roberts in Alavi’s and Franz’ seminar "Disability History" in winter semester 2016/17.^↩
[5] www.leichtesprache.org, visited 2/22/2017.^↩
[6] Lamers, Wolfgang/Heinen, Norbert (2006): Bildung mit ForMat – Impulse für eine veränderte Unterrichtspraxis mit Schülerinnen und Schülern mit (schwerer) Behinderung. In: D. Laubenstein, W. Lamers, N. Heinen (Hrsg.): Basale Stimulation kritisch – konstruktiv. Düsseldorf, 141-205.^↩
[7] Seitz, Simone (2006): Inklusive Didaktik: Die Frage nach dem Kern der Sache. Zeitschrift für Inklusion www.inklusion-online.net/index.php/inklusion-online/article/view/184, visited 2/22/2017. ^↩
[8] Reeken, Dietmar von (2014): Historisches Lehren und Lernen. In. A. Hartinger, K. Lange (Hrsg.): Sachunterrichtsdidaktik für die Grundschule. Berlin, 98-116. ^↩

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Dreamscapes for Public Disability History: How (and Why, and Where, and With Whom) We Collaborate

by Penny Richards and Susan Burch

Historians and collaborators Penny Richards and Susan Burch decided to use this blog space for an extended virtual conversation on public disability history. They invite you to join in the discussion.

PR: So, when people ask you about disability history and ‘the public’, how do you answer?

Black and white photo of Junius Wilson 

on the day he moved into his cottage at Cherry Hospital.

Wearing his favorite Washington football team’s baseball cap,

the elderly black deaf man sits in a wheelchair at the entrance

to the house, looking slightly upward to the photographer 

while holding another baseball cap in his left hand.  

Photo courtesy of John Wasson.

SB: The word that comes to mind is ‘accountability.’ Learning about Junius Wilson’s story, and now many stories of families and Native peoples impacted by institutionalization (including Canton Asylum, a US federal psychiatric institution in South Dakota) clarifies that our work can have significant human impact. My academic training engaged ethical issues narrowly. I don’t recall ever having direct conversations about what it meant to interpret people’s lives: to consider that our historical subjects--however long ago they lived--may have kin or others potentially reading our work now. A conversation with Faith O’Neil (who granted permission to share this) stays with me. Faith’s grandmother, Elizabeth Alexis Fairbault (Sisseton Wahpeton Sioux Tribe) was incarcerated at the Canton Asylum. Faith’s own research uncovered a published Asylum history. It was wounding. Pathological, racist labels from archival sources were left unquestioned, reinforcing stigmatizing depictions of Faith’s ancestor. The book’s public/published presence intensified the hurt. It gives me pause to think about the sprawling distance between “insane patient” and “grandmother” (and Elizabeth Fairbault’s other names, the names that acknowledge her full humanity).

I’m not suggesting that scholars shouldn’t express their own interpretations or avoid tough subjects. To the contrary. But actively considering how our work may--or may not--contribute positively to the communities we study is necessary, too. In its best moments this approach actively engages with broader social justice work, and in so doing creates more thoughtful historical projects.

PR: Accountability is an important ethical standard for disability historians. Even with mostly nineteenth-century projects, I sometimes encounter relations who are interested in the people I describe, because they have a personal connection. Most of my projects involve subjects who wouldn’t have had direct descendants--they’re the spinster aunts and bachelor uncles that don’t always come with stories in the usual local history sources. But if they do have family-generated stories, that’s really exciting. If we can fill in some blanks for each other, that’s an exchange that exemplifies why responsible interaction with community and family histories is so worthwhile.

SB: This seems directly connected to the ‘place’ where your work often appears: open-access, online sites. How does accountability show up for you in this context?

PR: When I write disability history articles on Wikipedia, I think of being accountable to the public who might come looking for stories out of need or curiosity. If a parent is just learning their baby is blind, for example, they may seek biographies to give them a sense of what the future might hold (and not just the hero stories), or articles to help them comprehend the array of programs, organizations and laws they’re encountering. I imagine the student who wants to write a school paper that includes histories related to their own experience of chronic illness. They need accurate and clear language, and links to good and accessible sources for more information. They’re the public I imagine being accountable to, on Wikipedia.

SB: That resonates loudly with me. Generating disability history that’s accessible to a broad public has interlocking benefits: changing the dominant story of disability and disabled people; offering more inclusive models for historical work generally; and inviting more people to come into this work. Accessibility extends beyond how the content is crafted, which is partly why I’m drawn to your engagements with Wikipedia. Sharing the work in accessible formats reduces common barriers that seriously limit the current reach of disability history.

In a somewhat related way, I’m wondering what you think about collaboration in disability history: you’ve collaborated on many different kinds of collaboration (editing other people’s work, co-authoring, synthesizing current works by others, participating in blog-fests etc).

PR: Ah, well, like this very collaboration, I think for me the hardest part is opening up my work life --which is also my home life. Collaborating with me means writing days rained out by seizures, or school calendars, or marching band practice, and that’s stuff I don’t love imposing on other people. But, on the other hand, I likely wouldn’t be so interested in disability history if not for this particular home life, which is also my work life. I guess that’s one of the “hazards” of collaborating across the campus wall--life out here is a little messier and noisier!

An oval-framed photo from about 1903, 

in sepia tones, of an older woman, 

Marion Brown, white hair parted in the center,

 wearing a black cap and dress; the 

photographer's cardboard frame adds 

a red border and the words "Jenner & Co."

I like working with people who have first-hand knowledge or connection to the subject--because I often don’t bring that to the project (I don’t identify as disabled, and I know other privileges can keep me from noticing what I should). I like being able to ask, “What does it seem like she’s really saying here?” and getting an unexpected answer. This happened with the Marion Brown project. I shared it with a group of participants in an MS (multiple sclerosis) program, and they had so many cool insights I couldn’t have reached solely from my own experience. They were animated to find a familiar story in a historical setting--because how often do the words and feelings of people with chronic illness feature in historical narratives, especially ones meant for a general readership? Now that the project has a blog, I get comments from knitters and cheese experts too, all contributing to my understanding of Marion Brown’s life.

Wikipedia is all collaborative. Anyone can rewrite your work, but much of the collaboration happens outside the articles themselves, in WikiProjects that create worklists to focus attention on a specific topic. I’m happy when folks come through and add tags and fix formatting and ask questions. That kind of collaboration has been helpful to me, because I know a group of like-minded volunteers is watching, reading and refining what I write, as soon as I write it--not a year later, when it maybe finally turns up in a print journal, too late to be changed. In general, I like the immediacy of collaboration online (like the format we used to generate this conversation!).

SB: I especially like our collaborations because there’s a strong level of trust (and fun, and activist experience, and shared love of dance). It supports making mistakes as part of the process. How many drafts have we workshopped, re-routing research and writing paths because our conversations revealed some key point?...

The immediate understanding that our work impacts us as people matters, too. Bearing witness to deeply human experiences--tender, lusty, funny, baffling, brutal, and mundane--imprints how and who we are. But it’s rare that (‘academic’) historians breach this topic, at least in public spaces. It’s in quiet hotel corners, living rooms, porches, and Skype chats I’m asked how feel about studying stories often involving significant violence and trauma. Friendship and support accompany the questions. But so do other yearnings: to navigate compassionately these kinds of complicated pasts and also navigate compassionately our own lives in the present. I imagine this as part of a dreamscape of public disability history that’s fully ‘being’ public disability history. Tell me more about how you imagine this--

PR: Both welcoming in and reaching out are important. For the reaching way out, I think there’s a pervasive cultural idea that working with people who have cognitive disabilities is something different from working with any other group, with children or older folks or across language obstacles; but it’s not a “special case”. Pedagogy is pedagogy, collaboration is collaboration, we look for common ground, we find starting places, we ask for help when we’re stumped. If written language and specialized vocabulary aren’t the best mode of exchange, maybe we gather in material culture, museum professionals, even visual artists and sound designers, to make disability history accessible. And we’d best approach both welcoming and outreach aspects of public disability history as opportunities for mutual exchange--not as a one-way interaction.

I’ve been glad to see disability as a theme in the StoryCorps project, and disability history too, through the Disability Visibility Project. The project at Swansea about disability in a mining society did some extensive and creative outreach too.

Can we have disability history booths at resource fairs? At equipment expos? At playdates at accessible playgrounds? Not here and there, but as one of the usual things that disability historians do? That’s my dreamscape.

SB: [Nodding enthusiastically]. A dreamscape that holds space for wide sharing of information and local in-person interactions: yes! And inviting more people to recognize disabled people’s active presence in big and small lived histories. The challenges of resources, of inaccessible environments, of contexts that work against these kinds of public connections..to return to a self-reflective process (and perhaps public disability community reflective process) of considering ‘who’s not here’ and why…

PR: Well, we’re on a blog, so we should maybe use the possibilities of the format here to invite others into the conversation now. As historians, I guess we’re always up for stories from real life. In comments, readers, we’d love to know your ideas for a public disability history dreamscape, for your experiences of collaborations across the campus wall, and the mutual exchanges that were successful (or at least lesson-filled). What are the barriers you’ve encountered? What rewards made it worth the effort?

Recommended Citation:
Penny Richards & Susan Burch (2016): Dreamscapes for Public Disability History: How (and Why, and Where, and With Whom) We Collaborate. In: Public Disability History 1 (2016) 21.

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Making of an accessible exhibition on Disability History. Experiences from LeibEigenschaften. Der „beschädigte“ Körper im Blick der Vormoderne [The pre-modern view on the ”impaired” body]

By Sonja Kinzler (curator)

Although calls for accessibility aren’t new, still relatively few curators are devoted to accessible shows. The exhibition LeibEigenschaften¹ was part of the the DFG-funded research project "Homo debilis" at the Bremen University History Department. The 100 square meter exhibition was on display in the Bremen House of Science in March and April 2012. LeibEigenschaften aimed at a high level of accessibility and succeeded thanks to the interest among the involved parties to create something beyond the traditional modes of communication in museum displays, creating a choice of channels to receive the contents (vision, sound, touch; accommodation of cognitive and mobility restrictions). That the topic itself was Disability History was an important motivation for the team behind the exhibition.

Cordula Nolte, Professor in Medieval History at Bremen University, realized this potential early on and actively sought cooperation with local disability activists, a curator (myself), exhibition designers (ZwoAcht), and students from Bremen University and Bremen University of Arts. This concentrated competence made it possible to realize the project even on a limited budget. The exhibition was made to fit the House of Science. There was a great interest, however, in adapting it as an accessible, traveling exhibition, but those plans had to be cancelled due to lack of funding.

Lucas Cranach the Elder:
“Jüngstes Gericht, heilige Elisabeth
und heilige Magdalena”, 1519.
Collection of the Veste Coburg.

Purpose of LeibEigenschaften was to present living conditions and coping strategies of physically (and mentally) conspicuous people in the pre-modern period. The conceptualizing process started with us finding an agreement on what we considered to be the most important characteristics of the period in general, and deciding against a chronological presentation. We put emphasis on countering popular misconceptions about the way embodied difference was dealt with at the time: No, suffering wasn’t generally seen as divine punishment, and "disabled" persons weren’t necessarily abused and ostracized. We decided to do this without repeating and correcting the misconceptions but instead presenting and illustrating state-of-the-art interpretations of the topic. We also decided not to make explicit connections to the present, which allowed the visitor to experience a distant (in time, not space) culture populated by "cripples" and "raving maniacs", but without a trace of modern medical and social interpretations. Any connection to own experiences and similarities to the present were left to the visitor. This is why, also, the concept "disability" did not play a part in the exhibition, except for a brief introduction where we explained that the exhibition does without that term. However, in the texts in simple German we provided, the term was used, as we were unable to agree on another designation that was easily understandable. As mentioned, the exhibition wasn’t chronologically structured, but we needed to structure it somehow to make it comprehensible.

We immediately decided against arranging it according to types of "disability", not only because this would go against the perspective outlined above, but also since this kind of categorizations doesn’t fit the sources we presented. Instead, we used the topics "Mobility and Activity", "Care and Aid", "Back-Breaking Work – Illness and Health", "Miracle Cures and Miraculous Bodies", and "Admiring – Beholding – Concealing – Looking Away". This followed the structure of the "Homo debilis" project.

These themes were well suited to be translated to symbolic spaces that were important for pre-modern lifeworlds, especially relating to embodied difference: the bed, the street, the shrine, and the cabinet of wonders.
The exhibition designers were able to partially recreate a shrine and a cabinet of wonders on site. In the shrine, the visitors were confronted with the great significance of religion in the pre-modern worldview, and in the cabinet of wonders, the gaze on the conspicuous body and reactions towards "different" people were highlighted. The "bed"-section dealt with caring and nursing. The largest section was "the street", where the public sphere, labour, and physical aids were addressed.
Although the exhibition couldn’t go on the road, it did result in a number of publications that makes the contents and concept available to a wider audience. It was important to us to collect our experiences and make not only the contents, but the practical know-how we accumulated publicly available. We did this in the volume "Wissenschaft für Alle – in Ausstellungen barrierefrei präsentieren" [Science for all – How to make accessible exhibitions, edited by Cordula Nolte and Sonja Kinzler, Kiel 2012],  a making-of story and a handbook for accessible exhibitions. It details the whole process working with LeibEigenschaften, from planning to the end evaluation. The book includes viewpoints from several experts, giving their perspectives on different aspects of accessibility: mobility, hearing, vision, and comprehension. They offered many insights that are hopefully valuable for future accessible shows.

Through this project came the realization that creating an accessible exhibition lets you learn a lot about curating. It trains you in opening different ways to access the contents. Curators should be aware of this from early on in the process and communicate it to the funding institutions: creating accessible exhibitions doesn’t mean spending a lot of money on a small minority of visitors. While making exhibitions available to everyone is important and in the end a question of democracy,  dismantling barriers benefits everyone.

For further reading, see also:
www.leibeigenschaften.de

References:

• Cordula Nolte, Sonja Kinzler (Eds): LeibEigenschaften. Der „beschädigte“ Körper im Blick der Vormoderne, Bremen 2012
• Sonja Kinzler: ”Wissenschaftstransfer in eine barrierefreie Ausstellung. Anmerkungen zur inhaltlichen Konzeption der Ausstellung LeibEigenschaften - Der ‚beschädigte‘ Körper im Blick der Vormoderne”, in: Cordula Nolte (Ed.): Phänomene der „Behinderung“ im Alltag. Bausteine zu einer Disability History der Vormoderne, Korb: Dydimos 2013, 25-36

Recommended Citation
Sonja Kinzler (2016): Making of an accessible exhibition on Disability History. In: Public Disability History 1 (2016) 13.

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1 The title is a play with the German word for serfdom, „Leibeigenschaft“, which can be divided in „Leib“, body, and „Eigenschaft“, property in the sense of characteristic.↩

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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.

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