Dis/ability: The Complex Search for Voices in the Pre-Modern Era

By Julia Gebke

“If we can’t speak, why even live? We’re like dead bodies moving around.” That’s what Shabana said in a BBC News report by Yogita Limaye last year, shortly after the Taliban enacted their "virtue laws" in Afghanistan at the end of July 2024. These laws prohibit Shabana and all other Afghan women from speaking in public, reading aloud, and singing, among other things. The Taliban classify women's voices as intimate and therefore exclusively for the private sphere, which is the basis for the ban. Their voices are to remain silent in public spaces. After making women invisible by requiring them to wear concealing clothing that is not too thin, short, or tight, the Taliban are now focusing on making women inaudible. The significance of voices and voicelessness also plays a significant role in historical studies and sometimes poses challenges to our work. 

One common thread among gender studies, postcolonial studies, and dis/ability studies is the effort to give a voice to people who have largely remained unheard, i.e., silent, throughout history (a few samples of recent projects: HEX, Voices & Agencies and Voices of Women in Early Modern Ireland). We are now trying to bring those who are usually relegated to the edges of the stage – offstage and behind the curtains – onto the stage. We deliberately shine the spotlight on them so they can shine in it. We want to do them justice, give them space, and honor their voices. Sometimes, however, it feels more like we are dragging them onto the stage and mercilessly shining the spotlight on them. This is a challenge we encounter time and again. We want to do them justice, but sources often don't reveal enough about them to show their full complexity. Their view of things often has to remain hidden, because for a long time, their view of things was simply not in demand.

They are not exactly behind the curtains or offstage, but facing the stage: the theatere audience portrayed by Hippolyte Michaud (1840–1886), Public Domain, https://id.rijksmuseum.nl/20027409

We try to categorize and study them under umbrella terms such as minorities, marginalized groups, and outcasts (Randgruppen and Randständige in German). However, after spending more time studying these groups, it becomes clear that the term "marginalized" is misleading because they probably make up the majority of early modern society. In terms of their lack of voice, they are a majority, not a minority. It would be more accurate to describe the nobility, clergy, and scholarly elites as marginalized. However, available sources, i.e., who was written about and who was not, or who wrote and who did not, distort our view of the dimensions. So, how can we rectify this? How can we give a voice to the voiceless without inventing one for them? Isn't it presumptuous to believe that we can become a mouthpiece for those who have whispered so quietly until now? With all these linguistic images of giving a voice and becoming a mouthpiece, aren't we already taking the reins again and placing ourselves in a position that sometimes seems downright intrusive?

That's why I like the magazine andererseits: journalism by people with and without disabilities. Together, they research and work on stories and reports, publishing them in various formats with different partners, such as Magazin Royale from German broadcaster ZDF or the magazine Dossier. They usually publish the results of their research in simple language to make them accessible and understandable to as many people as possible. Here, all voices are represented directly. No one has to be given a voice.

Returning to our initial conundrum: How do we find the voices of people who were hardly heard in earlier eras?

Serendipity

Fortunately, there are always these individual cases, these unexpected personal accounts that provide exciting insights we hardly dared to hope for. To give a few examples: Carlo Ginzburg's northern Italian miller, Domenico Scandello, also known as Menocchio (Ginzburg ⁷2011); Peter Hagendorf, a mercenary (Hagendorf 2012); Glikl von Hameln, a Jewish merchant (Glückel 1987); Franz Schmidt, a Nuremberg executioner (Schmidt 2015); and Dionys Fitzherbert, an Englishwoman born into an Oxfordshire gentry family (Fitzherbert 2010). They all left behind accounts of their lives that are to be understood as exceptions rather than the rule.

Their insights are fascinating, but extreme caution is required when drawing conclusions about an entire group from an individual life. Many Ashkenazi merchant women in northern and southern Germany may have been socialized and raised similarly to Glikl von Hameln and may have thought similarly. However, without the necessary comparative material, it is difficult to determine what unites this group culturally in terms of their way of life and thinking and what can be attributed to Glikl's individual characteristics in her memoirs. Rachel Greenblatt (2024) has made an exciting attempt at contextualization in this regard. Similarly, Carlo Ginzburg found independent theoretical thinkers in the rural but educated social class in northern Italy; however, they would not have been the majority (Ginzburg ⁷2011: 155-159). These are not necessarily isolated cases, but the available documentation is insufficient to allow us to draw general conclusions about an entire group. The same applies to others.

Against Our Grain

We have source genres, such as court and visitation records, in which our voiceless subjects speak as defendants or witnesses. Sometimes, as in the Spanish Inquisition records, we hear them directly and unfiltered. Every word was recorded and transcribed. However, it must be kept in mind that their statements were guided by the questions they were asked. Not to mention, the situation itself was forced, which does not exactly encourage anyone to speak freely. Sometimes, we find their statements paraphrased by the person taking the minutes. These records often reveal more about the Spanish Inquisition or the conditions of a visitation than about the people who were questioned.

Nevertheless, we can read these sources critically to gain insight into the lives of the laundress or gatekeeper. In doing so, we must take care to make their voices heard without putting words in their mouths and to listen to what we ourselves may not want to hear. What goes against our grain because it does not align with our own ideas? We must not distort our sources just because their statements make us uncomfortable.

A recent television example illustrates this dilemma. In an episode of the SWR documentary series Down the Road – Die Abenteuerreise (Down the Road – The Adventure Trip), Daniel, a young man with Down syndrome, talks about how being born with Down syndrome prevented him from pursuing the education he wanted. Hearing this statement and simply accepting it without immediately wanting to do something about it is difficult. Ideas start to flow such as: Society and his environment have drummed into him that education and a subsequent career are life's goals and must be pursued at all costs. Simply acknowledging this struggle as a statement in its own right was incredibly difficult for me, but it is something we owe to others. The same applies to historical persons.

In my doctoral thesis, I discussed the work of the Jewish physician Isaac Cardoso, who expressed anti-Jewish tropes, such as the idea that all Jews are naturally prone to melancholy. He then twists this trope by citing the harsh life in the diaspora as justification and holding the Christian environment responsible for the increasing diagnosis of melancholy among Jews, thereby subtly criticizing it. Initially, I was displeased that he was using the trope instead of vehemently combating it. Only with some distance was I able to accept this and admit that his argumentative strategy was much more promising than strict negation. Nevertheless, I was left with a bad taste in my mouth when I realized that he had not only used the anti-Jewish trope but had also internalized it. However, we must neither romanticize nor demonize history in retrospect (see Jarrett 2020: 81-94).

We don't need inspiration porn, as Stella Young called it, nor do we need to conjure images of the dark Middle Ages. We should leave historical statements as they are, even if that is sometimes difficult.

However, this discomfort is precisely an indicator of what we ourselves are struggling with. According to Jean-Jacques Stiker, one of the pioneers of dis/ability history, the fear surrounding disability is, above all, very unspecific (Stiker 2012: 6-9; Stiker 2007: 7-10). Disability confronts us with our own vulnerability and holds up a mirror to us. According to the German Federal Statistical Office's July 19, 2024, press release, "Just under 91% of severe disabilities were caused by illness, and around 3% of disabilities were congenital or occurred in the first year of life."

Lurking in the back of our minds is a concern that is by no means statistically unfounded: It could be me; it could happen to me. This fear isn't necessarily of a particular disability itself, but rather of the consequences, of the gaze of a society that still excludes more than it includes and an environment that is still characterized more by barriers than accessibility.

Changing Perspective

Due to the desolate source situation, we occasionally have to admit defeat. Then it is necessary to accept that I cannot make the voice audible and that I have to change my perspective. Often, I am thrown back to society's view of our "marginalized" people. However, this perspective is by no means obsolete. On the contrary!

It helps us understand and question the non-disabled perspective that still dominates society today. Unfortunately, a magazine like andererseits is still the exception rather than the rule. Journalists with disabilities are few and far between in the rather monotonous media industry. This makes contrasting the social perspective with past perspectives and questioning the outside view of disability all the more important. Both external and internal perspectives have their validity. Both are necessary for changing the way we think. Although we are more inclined to lend our voices to those who have had little say in history and tell their stories from their perspective, this desire must occasionally remain a pipe dream due to the unpredictable nature and availability of sources.

Last Option: Fiction?

Some may not want to consider this option at all, while others may find it appealing. To what extent can fiction address a lack of sources? For those straddling the disciplines of history and literature who can imagine such an approach, I recommend telling several different versions of history and presenting them side by side to avoid attributing a particular version to historical actors.

However, I am undecided and torn on this point. On the one hand, I have this thought pop into my head: Shouldn't we leave fiction to the writers? On the other hand, writers are unlikely to be enthusiastic about the multi-version option. In science communication, archival and media education, however, such fictional narratives based on source material could have potential. The Hidden Valencia project (Bolufer et al. 2022) is a step in this direction. This smartphone app features the fictional character Josep, a blind street singer from the early modern period who guides users through Valencia's old town during the Revolt of the Brotherhoods (1519–1522). At the very least, I didn't want to gloss over this point, so I put it up for debate.

Not all sources can be read against the grain, and we don't always have serendipity on our side. However, almost every source opens up a perspective that allows us to question social norms, whether past or present. Adding a dash of fiction could fuel this possibility even further. Ultimately, it is up to us to find a way to do justice to the long-unheard voices of the past.

Julia Gebke is a research associate at the Austrian Academy of Sciences in Vienna (Austria). She co-founded the research group DisAbility Studies at the University of Vienna and is a founding member of the Early Modern Disability History Network.

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References:

• Bolufer, Mónica / Gomis, Juan / Llanes, Blanca (2022): Making Disability visible in Digital Humanities. Blind Street Singers in Early Modern Valencia, in: Fabrizio Nevola / David Rosenthal / Nicholas Terpstra (ed.): Hidden Cities. Urban Space, Geolocated Apps and Public History in Early Modern Europe, London, 85-102
• Fitzherbert, Dionys (2010): Women, Madness and Sin in Early Modern England. The Autobiographical Writings of Dionys Fitzherbert, ed. by Katherine Hodgkin, Farnham
• German Federal Statistical Office (July 19, 2024), Press Release, https://www.destatis.de/DE/Presse/Pressemitteilungen/2024/07/PD24_281_227.html
• Ginzburg, Carlo (⁷2011): Der Käse und die Würmer. Die Welt eines Müllers um 1600, Berlin
• Greenblatt, Rachel (July 2024): Women Wrote. Glikl in Context, in: In Geveb. A Journal of Yiddish Studies, https://ingeveb.org/articles/women-wrote-glikl-in-context
• Hagendorf, Peter (2012): Tagebuch eines Söldners aus dem Dreißigjährigen Krieg, ed. by Jan Peters, Göttingen
• Hameln, Glückel von (1987): Denkwürdigkeiten der Glückel von Hameln, transl., comm. and ed. by Alfred Feilchenfeld, Frankfurt am Main
• Jarrett, Simon (2020): Myths of Marginality. Idiocy in Britain in the Long Eigteenth-Century, in: Special Issue: DisAbility im Europa der Frühen Neuzeit, ed. by Julia Gebke and Julia Heinemann, Frühneuzeit-Info 31, 81-94
• Limaye, Yogita (September 11, 2024): 'If we can't speak, why live?' - BBC meets women after new Taliban law, BBC News, https://www.bbc.com/news/articles/c20rq73p3z4o
• Schmidt, Franz (²2015): Hinrichtungen und Leibstrafen. Das Tagebuch des Nürnberger Henkers Franz Schmidt, ed. by Geschichte für Alle e.V. - Institut für Regionalgeschichte, Nürnberg
• Stiker, Henri-Jacques (2007): L’infirmité est le miroir de notre monde. Entretien conduit par Yves Jeanne, in: Reliance 26,4, 7-10
• Stiker, Henri-Jacques (2013): Corps infirmes et sociétés, Paris, new edition
• Young, Stella (April 2014): I'm not your inspiration, thank you very much, TEDxSydney, https://www.ted.com/talks/stella_young_i_m_not_your_inspiration_thank_you_very_much

Recommended citation:

Julia Gebke (2025): Dis/ability. The Complex Search for Voices in the Pre-Modern Era. In: Public Disability History 10 (2025) 6.

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Pedagogies of Hope and the Leuven DisABILITY Film Festival

by Pieter Verstraete

Introduction

The discourse surrounding hope in pedagogy has evolved over decades, shaping the way educators conceptualize their roles in fostering optimism and agency among students. This paper explores the seminal ideas of Dutch historian of education Lea Dasberg (1930-2018) and her pedagogical philosophy of hope, juxtaposing them with contemporary applications such as the Leuven DisABILITY Film Festival. By contextualizing historical perspectives on education within broader social narratives, this discussion underscores the relevance of hope as a central tenet of both educational theory and practical initiatives aimed at fostering inclusivity.

Lea Dasberg and the Pedagogy of Hope

Lea Dasberg was a historian of education whose works significantly influenced pedagogical discourse in the Netherlands and beyond. Born into a Jewish family and physically disabled, Dasberg’s intellectual pursuits were shaped by her experiences and the socio-political climate of her time. Her seminal work, Grootbrengen door kleinhouden (1976), challenged prevailing educational paradigms, arguing that the prevailing tendency to restrict children's growth through overprotection inhibited their willingness to become adults. Dasberg’s academic prominence was cemented with her appointment as a professor at the University of Amsterdam in 1980. Her inaugural lecture, Tribute to Hope, addressed key challenges in pedagogical thinking as the 20th century approached its end. She argued that education should be forward-looking, yet cautioned against the perils of millennial pessimism, which, she believed, undermined constructive pedagogical efforts.

The Crisis of Future-Oriented Pedagogy

Dasberg identified several factors impeding a hopeful pedagogy. She critiqued the rising influence of apocalyptic thinking, particularly within science fiction and futurology, which often portrayed bleak and dystopian futures. She also scrutinized anti-authoritarian educational movements that advocated for absolute freedom, cautioning that such approaches could lead to nihilism rather than empowerment.

Drawing parallels between the anxieties surrounding the year 2000 and those of the year 1000, Dasberg highlighted the cyclical nature of millennial fear. She argued that such fears often resulted in educational stagnation, where young people were conditioned to expect decline rather than progress. To counteract this, she proposed a pedagogy rooted in hope, emphasizing the educator’s responsibility not only to translate knowledge but also to embody optimism.

Figure 1: Cover of the inaugural lecture “Pedagogy in the shadow of the year 2000: Tribute to hope” by Lea Dasberg (1980) © Private collection Pieter Verstraete

Constitutive Elements of Dasberg’s Pedagogy of Hope

Dasberg’s theory of hope-based pedagogy was built on three foundational principles: historical consciousness and action, the importance of the other (world), and the social rather than the individual.

1. Historical Consciousness and Action

Dasberg argued that teaching history should extend beyond rote memorization of facts and figures. For her, historical education had to be an active process that inspired students to engage critically with the past. She emphasized Holocaust education as an example, advocating for pedagogical methods that encouraged students to internalize lessons from history and apply them to contemporary issues. Her own initiatives, such as educational reforms in the Negev Desert and school exhibitions on the Holocaust, exemplified this belief.

2. The Importance of the Other (World)

One of Dasberg’s major critiques of contemporary education was its excessive preoccupation with the self. She observed that children’s literature often reinforced this trend by encouraging self-identification rather than exposure to new perspectives. Instead, she proposed that children’s books should introduce young readers to unfamiliar worlds, challenging them to engage with experiences beyond their immediate reality. By doing so, she believed that education could cultivate empathy, curiosity, and a broader worldview.

3. The Social Instead of the Individual

Dasberg was critical of the growing emphasis on individualized education, which she viewed as counterproductive to the development of a collective future. She lamented the Romantic turn in pedagogy, which had shifted educational goals from social utopias envisioned during the Enlightenment to inward-focused psychological development. In her view, an overemphasis on individual needs constrained children’s potential by defining them according to their current attributes rather than their future possibilities.

The Leuven DisABILITY Film Festival: A Contemporary Application of Hope-Based Pedagogy

 

Figure 2: DisABILITY Filmfestival Team 2025 © DisABILITY Filmfestival

Origins and Philosophy

Founded in 2011, the Leuven DisABILITY Film Festival embodies some of Dasberg’s pedagogical principles. With an overarching goal of fostering inclusivity, the festival provides a space for meaningful dialogue between individuals with and without disabilities. The initiative emerged from a recognition of the need to challenge stereotypes and promote nuanced understandings of disability.

At its core, the festival seeks to achieve three primary objectives: ensuring an enjoyable experience for all participants, creating spaces for people to interact beyond identity-based divisions, and facilitating discussions that move away from simplistic representations of disability. By adopting a pedagogical approach akin to Dasberg’s, the festival prioritizes engagement and dialogue over prescriptive narratives.

Activities and Accessibility

The festival’s programming includes a range of activities designed to maximize inclusivity and engagement. These include:

•    Film screenings with contextual introductions and discussions
•    A film café to encourage informal dialogue
•    A short film competition
•    Public lectures in collaboration with the Leuven Centre for Health Humanities
•    Targeted screenings for primary and secondary schools

To ensure accessibility, the festival incorporates multiple accommodations, including sign language interpretation, step-by-step guidance for individuals with autism, and audiodescription for visually impaired attendees. Additionally, all promotional materials undergo review by city accessibility councils to enhance inclusivity.

Budget and Organizational Structure

Operating as a non-profit organization, the festival relies on a mix of ticket sales, subsidies, and volunteer contributions. With an annual budget of approximately 30,000 euros, it maintains financial viability through a combination of public funding and grassroots support. A core team of six individuals coordinates the efforts of around 30 volunteers, ensuring the smooth execution of the festival’s diverse activities.
 

The Intersection of the DisABILITY Film Festival and the Pedagogy of Hope

Togetherness Instead of Identity Politics

One of the key distinctions of the Leuven DisABILITY Film Festival is its emphasis on togetherness rather than rigid identity politics. While many disability-focused film initiatives center on promoting specific identity-based narratives, the festival fosters a space for collective engagement. This approach aligns closely with Dasberg’s critique of self-preoccupation in educational settings. Rather than reinforcing predetermined identities, the festival encourages participants to engage in open-ended discussions that transcend personal backgrounds.

 Figure 3: Performance by Sofie Cox during the 13th edition of the Leuven DisABILITY Filmfestival © DisABILITY Filmfestival

 

Cracks Instead of Concrete Alternatives

Another crucial aspect of the festival’s philosophy is its commitment to highlighting possibilities rather than prescribing rigid alternatives. Rather than simply countering stereotypes with fixed representations, the festival seeks to expose the constructed nature of social narratives surrounding disability. This approach resonates with Dasberg’s belief in historical consciousness and action. By demonstrating that existing social structures are products of historical developments, the festival empowers new generations to envision alternative futures.

Conclusion

The pedagogy of hope, as envisioned by Lea Dasberg, remains highly relevant in contemporary educational and social initiatives. By advocating for historical consciousness, engagement with the unfamiliar, and a shift from individualism to collective responsibility, Dasberg provided a blueprint for an education system that fosters optimism and agency. The Leuven DisABILITY Film Festival exemplifies the application of these principles in practice, offering a dynamic space for dialogue and transformation.

In a world often dominated by narratives of crisis and decline, initiatives that embrace hope-based pedagogy are more crucial than ever. Whether in the classroom or in cultural spaces such as film festivals, fostering a pedagogy of hope can serve as a powerful antidote to despair, inspiring individuals to actively shape a more inclusive and optimistic future.

Pieter Verstraete is a senior lecturer in the history of education at KU Leuven (Belgium). He is one of the founders of the annual Leuven DisABILITY filmfestival.

 

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References 

 

Recommended citation:  Pieter Verstraete (2025): Pedagogies of Hope and the Leuven DisABILITY Film Festival. In: Public Disability Histoy 10 (2025) 5.

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Perspectives on the Historical Approach to Dementia

by Laura Dietl

Dementia has, thus far, received little attention in Disability History. This post aims to change that. Firstly, dementia’s relevance to the field will be established, along with key methodological challenges. A brief historical overview of how dementia has been perceived and dealt with from antiquity to the present will follow.

Why focus on Dementia?

Dementia is an increasingly pressing societal issue as the risk of common forms like Alzheimer's disease rises with age. While dementia is undoubtedly a key challenge for aging societies today and in the future, it has not been given sufficient prominence, either in traditional historiography or in Disability History.
The symptomatic decline of intellectual and mental abilities is a phenomenon that has persisted throughout human history and can be traced through various sources (Karenberg/Förstl 2003). A crucial aspect is how societies have included or excluded individuals with dementia symptoms, positioning the condition between "normality" and "deviance" and constructing it as a "disability" or "illness".

Methodological Challenges

A major challenge is thus the issue of terminology: historical terms for dementia symptoms varied widely, and "dementia" itself has evolved in meaning, complicating historical analysis (Karenberg/Förstl 2003).
Another difficulty lies in the sources. Relevant source material on dementia is scarce and fragmented. Most existing sources are medical-historical, while sociohistorical and personal accounts remain limited.
A key issue is the absence of autobiographical records. Dementia inherently impairs memory and self-expression, making first-hand narratives rare. This absence may reflect both societal marginalization and the nature of the condition itself. Regardless of interpretation, this scarcity presents a fundamental challenge: acknowledging individuals with dementia as historical subjects despite predominantly third-party sources.

"Senectus ipsa morbus est" (Terenz): "That Senescence itself is an Illness"? – Dementia in the Greco-Roman Period

In Greco-Roman antiquity age-related cognitive decline received only periodic attention in philosophical, literary, medical, and legal texts. Dementia symptoms were ambiguously classified, reflecting the debate over whether cognitive decline was simply an inevitable consequence of aging – and thus inherently pathological – or a distinct phenomenon.
Philosophers like Plato, Aristotle, and Seneca the Younger viewed old age and illness, including dementia, as inseparable (Berchtold/Cotman 1998). Plato's Timaeus ("Dialogue") describes symptoms of age-related forgetfulness resembling modern dementia. In Nomoi ("Laws") he cites a proverb likening cognitive decline in old age to a return to a childlike state. Aristotle similarly addresses age-related cognitive decline in De generatione animalium ("Generation of Animals") and De anima ("On the Soul"), which frame old age as a pathological condition. In contrast, Cicero, in Cato Maior de Senectute ("Cato the Elder on Old Age"), attributes mental decline to moral weakness and rejects a blanket pathologization of aging. Overall, dementia in antiquity was perceived as being somewhere between normal aging and pathological deviation, with the idea of aging as a disease becoming more widely accepted.

Between "Caritas" and Exclusion – Dementia in the Middle Ages and Early Modern Period

Unlike antiquity, which lacked institutionalized elderly care (Eckart 2022), the emerging medieval hospitals, rooted in Christian caritas, likely served as places of care for dementia patients (Schuhmacher 2018). Despite limited sources, care for individuals with mental and physical disabilities (such as dementia) or chronic illnesses in the Middle Ages and Early Modern Period was largely provided by family members and relatives – there is no evidence of collective exclusion of those affected (Frohne/Nuckel/Büttner 2012).
However, literary sources from the late Middle Ages and Early Modern Period suggest a negative societal view of old age, often linked to mental decline. In Moriae encomium ("In Praise of Folly”) Erasmus of Rotterdam highlights forgetfulness and the regression of the elderly to childhood, reinforcing ancient stereotypes. Dementia symptoms could carry stigma and even make individuals vulnerable to witch trials (Berchtold/Cotman 1998). Additionally, madhouses which emerged during the Early Modern Period, likely housed those whose symptoms were seen as socially deviant (Schuhmacher 2018).

Developments in the 19th Century

Inspired by psychiatry pioneers like Philippe Pinel, the 19th century saw a gradual shift in the perception of the mentally ill, including dementia patients (Berchtold/Cotman 1998). No longer indiscriminately housed with criminals, they came to be recognized as patients. Enlightenment and humanist ideals promoted more humane treatment, though coercive measures such as starvation diets, cold showers, or straitjackets remained common. (Schuhmacher 2018).
The medical reclassification also spurred research: In Des maladies mentales ("Mental maladies. A treatise on insanity") Jean Étienne Dominique Esquirol provided the first systematic definition of dementia in 1838. However, age-related cognitive decline was still not widely seen as a medical condition, as reflected in the term Altersblödsinn ("senile foolishness") used for this purpose (Karenberg/Förstl 2003).

Who was Auguste Deter? – The Discovery of Alzheimer's Disease

In 1901, 51-year-old Auguste Deter was admitted to the Asylum for the Insane and Epileptic in Frankfurt am Main due to dementia symptoms. There, physician Alois Alzheimer took interest in her case, documenting their conversations in her medical records. After her death in 1906, he examined her brain histologically, identifying the pathology now known as Alzheimer's disease. The term "Alzheimer's disease" was introduced by Emil Kraepelin, a leading psychiatrist of his time, in the eighth edition of his textbook on psychiatry published in 1910. Unlike today's unified concept of dementia and Alzheimer's, a distinction between presenile and senile dementia persisted until the 1960s and 1970s, with Alzheimer's disease classified as the presenile form. However, Alzheimer himself increasingly questioned this dualistic classification as no differences beyond age at onset could be identified between the two forms (Karenberg/Förstl 2003).

Figure 1 - Portrait photo of Auguste, commissioned by Alzheimer from the clinic photographer and added to her medical file, 1901/1902. Credit: https://en.wikipedia.org/wiki/Auguste_Deter, last accessed on 10th February 2025.

While Alzheimer’s name is widely recognized, Auguste Deter remains largely unknown - a disparity worth addressing. Her recorded statements, such as "I have lost myself," offer rare insights into self-perception in dementia (Maurer/Maurer 1999).
Alzheimer’s discovery did not immediately change dementia treatment but successfully emphasized its biological basis, shifting medical and societal views. This shift is reflected in the gradual transition from the stigmatizing term senile foolishness to Alzheimer’s disease.

Dementia Patients as Victims of Nazi "Euthanasia"

During the era of National Socialism, debates arose over whether senile dementia constituted a krankhafte Erbveranlagung ("hereditary pathological disposition") (Karenberg/Förstl 2003). It is highly likely that individuals with dementia symptoms were among the victims of Nazi “euthanasia”.
Although research on this specific group as victims of persecution and mass murder remains limited, "senile diseases" were listed as selection criteria on reporting forms sent to Heil- und Pflegeanstalten ("sanatoriums and nursing homes") from October 1939 onwards (Cording 2000). The recorded data was reviewed to select “euthanasia” victims, explicitly targeting those with dementia or senile illness, particularly if severely confused or incontinent. Work capacity was crucial; individuals capable only of mechanical tasks (a criterion often met by advanced dementia patients) were marked for “euthanasia”.
However, some restraint was shown in targeting elderly patients. To avoid public unrest, war veterans, elderly individuals, and foreigners were occasionally spared (Schmuhl 1992). Specifically, elderly people who had been socially and economically integrated before developing age-related illnesses were largely excluded. Notably, dementias occurring before old age and conditions with dementia-like symptoms (e.g. progressive paralysis) were not covered by this exemption.
Sample analyses indicate that age-related illnesses accounted for only 1–2% of “euthanasia” cases in certain institutions (Schmuhl 1992). Nonetheless, these numbers confirm that age-related conditions were not categorically exempt.

Growing Societal Interest – From the 1970s to the Present

Since the 1970s, dementia has gained prominence in research and public discourse. In 1980, the first Alzheimer's Association was founded in the USA, followed by similar organizations worldwide, evolving into advocacy groups for patients and families.
In many industrialized Western societies, elderly individuals (with dementia) are increasingly placed in nursing homes, reinforcing a form of (spatial and societal) separation. Even today, old age and dementia remain linked to social exclusion. Moreover, dementia is understood differently across cultures— for example, in Ghana, affected individuals are confined to "witch camps," isolated from their families (further information: https://www.worldpressphoto.org/collection/photo-contest/2023/Lee-Ann-Olwage/1).

Conclusion

Dementia illustrates how concepts of normality, illness, and deviance are shaped by culture and society. The historical approach is not a linear success story but a process of societal negotiation, resulting in varied interpretations. Cognitive decline has been seen as a natural part of aging, a character flaw, or a pathology. History reveals both care and exclusion, stigma and violence, as well as instances of integration and self-empowerment.

Laura Dietl studied German and History at the University of Regensburg and currently works as a teacher.

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References:

Berchtold, N.C./Cotman, C.W. (1998): Evolution in the conceptualization of dementia and Alzheimer´s disease: Greco-Roman period to the 1960s. In: Neurobiology of Aging 19, 173–189.
Cording, Clemens (2000): Die Regensburger Heil- und Pflegeanstalt Karthaus-Prüll im „Dritten Reich“. Eine Studie zur Ge-schichte der Psychiatrie im Nationalsozialismus. Würzburg: Deutscher Wissenschaftsverlag.
Eckart, Wolfgang (2022): Alt werden und am Alter kranken – Lust und Last des Alterns von der Antike bis in die Neuzeit, in: Ho, Anthony D./Holstein, Thomas W./Häfner, Heinz: Altern: Biologie und Chancen. Alter und Altern individuell, kollektiv und die Folgen (Schriften der Mathematisch-naturwissenschaftlichen Klasse, Bd. 27). Wiesbaden: Springer Spektrum, 123-140.
Frohne, Bianca/Nuckel, Ivette/Büttner, Jan Ulrich (2012): Ausgegrenzt und abgeschoben? Das Leben körperlich und geistig beeinträchtigter Menschen im Mittelalter. In: bonjour.Geschichte 2, 1–25.
Karenberg, Axel/Förstl, Hans (2003): Geschichte der Demenzen und der Antidementiva. In: Förstl, Hans (Hrsg.) (2003): Anti-dementiva. München/Jena: Urban&Fischer, 5–52.
Maurer, Konrad/Maurer, Ulrike (1999): Alzheimer. Das Leben eines Arztes und die Karriere einer Krankheit. 2. Auflage Mün-chen: Piper.
Schmuhl, Hans-Walter (1992): Rassenhygiene, Nationalsozialismus, Euthanasie. Von der Verhütung zur Vernichtung „le-bensunwerten Lebens“ 1890-1945. Kritische Studien zur Geschichtswissenschaft, 75. 2. Aufl. Göttingen: Vandenhoeck & Ruprecht.
Schuhmacher, Birgit (2018): Inklusion für Menschen mit Demenz. Exklusionsrisiken und Teilnahmechancen. Wiesbaden: Springer VS.

Recommended citation: Laura Dietl (2025): Perspectives on the Historical Approach to Dementia. In: Public Disability History 10 (2025) 4.

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“Thou lump of foul deformity”: Richard III, William Shakespeare, and The Lost King

By Emmeline Burdett

The 2022 film ‘The Lost King’ tells the story of how the remains of the last Plantagenet king of England, Richard III (1452-1485) were rediscovered in a car park in Leicester, in 2012. (The Plantagenet dynasty ruled England from 1154 until 1485 and was succeeded by the Tudors). The rediscovery was spearheaded by an amateur historian, Philippa Langley. The film emphasizes that Langley feels a strong kinship with Richard because she sees parallels between the way in which he was portrayed as disabled as a way of discrediting him, and the way in which she has been looked down upon as a person with ME (myalgic encephalomyelitis). It is not uncommon for people with both ME, and other hidden impairments, to spend years, if not decades, attempting to get a diagnosis from a largely unsympathetic medical profession. Indeed, several times during the film ‘The Lost King’, Langley (played by Sally Hawkins) insists ‘It [ME] is a real illness!’. She does so with all the fervour of a person who has been repeatedly made aware that ‘real illnesses’ are ones which can be readily seen and identified by others – not ones which can be felt only by the people who have them.

Historical Background

Richard III was slain at the Battle of Bosworth Field in 1485. He was the last English king to be slain in battle. Because he was the last Plantagenet king of England, and because his death led to the beginning of the Tudor dynasty, it has been argued that the Tudors wanted to blacken his name, and that they did this in two ways – by portraying him as disabled, and by portraying him as deciding that, because he was disabled, he (in the words of William Shakespeare’s play about him) ‘could not prove a lover’, and would therefore hurtle enthusiastically down the path of least resistance and ‘prove a villain’(Langley, 2013, pp.30-52 provides an overview of this long-running debate). These ideas were given their most eloquent and enduring expression in the playwright William Shakespeare’s play Richard III, written c.1592-1594, the full title of which gives an account of Richard III’s supposed crimes, namely “his treacherous Plots against his brother Clarence: the pitiful murther [murder] of his innocent nephews: his tyrannical vaurpation [usurpation]: with the whole course of his detested life and most deserved death”. The play itself was based partly upon Sir Thomas More’s History of Richard III, published in 1513. Sir Thomas More’s text focused on Richard’s appearance, describing him as

Little of stature, ill-featured of limbs, crook-backed, his left shoulder much higher than his right, hard-favoured in appearance…’ (Sir Thomas More, quoted in Langley, 2022).

In the same way that Shakespeare’s play would later do, More’s biography makes the argument that deficiencies in Richard’s physical appearance were reflected in his character, and that

‘He was close and secret, a deep dissembler, lowly of countenance, arrogant of heart, outwardly friendly where he inwardly hated, not omitting to kiss where he thought to kill, pitiless and cruel…’

A Painting by an Unknown Artist

In the film ‘The Lost King’, Philippa Langley shows her husband (played by Steve Coogan) a photograph of a portrait of Richard III which has been overpainted to change his features so that they correspond more exactly to More’s description of his physical appearance. The portrait in question was first recorded in the inventory of the Tudor king Henry VIII, and analysis of its wooden panel suggests that it was painted between 1504 and 1520, probably from an earlier painting created during its subject’s lifetime. Though there is no indication of who painted the portrait, the British Library website speculates that the artist was either Flemish or British, and working at the English court. (British Library) The painting has been subject to various striking alterations – for example, the line of Richard’s coat has been altered to suggest that his right shoulder was much higher than his left, his eyes have been overpainted a steely grey and the corners of his mouth have been turned down to give him a more malevolent appearance. One alteration to which Langley draws attention in ‘The Lost King’ is that Richard’s fingers have been elongated to make them appear more like talons. These changes can be seen with the naked eye as the overpainting has aged differently from the rest of the painting. (British Library)

Figure 1 - A version of the painting in question. Credit: This Portrait by Unknown Author is licensed under CC BY-SA.

In their book The Lost King: The Search for Richard III, Langley and her co-author Michael Jones observe that, although it is now more widely accepted in academic circles that this view of Richard is deeply flawed, the image of Shakespeare’s hunchbacked, limping villain has been difficult to shake from the public imagination.(Langley, 2022, 49) Though they report that few members of the public regard Shakespeare’s portrayal as historically accurate, the fact of its existence tells us some things about fifteenth and sixteenth century English beliefs about disability. Chief amongst these was a belief in astrology, and this was of great importance to one of Richard III’s earliest detractors - the Warwickshire priest and antiquarian John Rous. In his history of the English kings, which was written during the reign of King Henry VII (1485-1509), Rous moved Richard’s date of birth from 2nd October (under the sign of Libra) forward three weeks to enable him to write ‘At his nativity Scorpio was in the ascendant … and like a scorpion he combined a smooth front with a stinging tail’.(Langley, 2022, 39). This was considered important because it tallied with the widespread belief in the power of astrology and its ability to manipulate events. (Vincent-Connolly, 2021,52).

That Richard III had a long history of being considered disabled – either because he was, or as a way of discrediting him, or both – makes a claim made in the British online journal Disability Arts Online seem rather bizarre. In an article published in October 2022, Jeffrey R. Wilson claimed that ‘Richard only really became disabled in the 1980s’. (Wilson, 2). Wilson was, though, making the point that, up until then, the possibility of Richard’s disability had not been seen as an important part of either his identity or of that of the actor who played him. This started to change with the late Antony Sher, who in 1984 drew on his memories of using elbow crutches when he broke his leg to accentuate Shakespeare’s description of Richard III as a ‘bottled spider’. Sher’s research for the role included ‘watching interviews with psychopaths’ and ‘reading about mass-murderers’, which would suggest that he was not challenging Shakespeare’s portrayal of Richard III as someone who had reached the top by killing anyone who got in his way. Sher also watched Stephen Dwoskin’s autobiographical film Outside In, about his experience of polio. Sher seems to have found in Dwoskin’s film a confirmation of what he already thought disability was – a purely physical experience:

Very useful for Richard. He [Dwoskin] has severe polio in both legs and has to wear complete callipers, so the legs can’t bend at all. He walks with crutches and even then, has enormous difficulty throwing each leg forward. I must use this – the hip throw. (Sher, 150)

Another sequence of him [Dwoskin] limping slowly out of the darkness into a square of light. A way of starting the play?  … You hear ‘Now is the winter’ coming from the darkness, then he starts to limp into the light… (Ibid)

 

Figure 2 - Anthony Sher as Richard III 1984. Credit: This Photo by Unknown Author is licensed under CC BY-SA.

All of this suggests that Sher believed that if his Richard III looked right, that was all that mattered. With such a visual portrayal, this was of course not irrelevant, but neither was it the only thing of any importance, particularly as the idea that he had a disability had played such a significant part in attempts to discredit him. Indeed, this seems not to have been understood, as someone with whom Sher discussed his preparation for the role suggested that Richard III’s physical disability should be a visual marker of his inner moral deformity:
Sher reports that the actor Richard Wilson asks him why the crutches that are so important to him are not mentioned in the text of the play Richard III, which Sher counters by saying that other characters keep referring to him as various four-legged creatures. Richard Wilson then asks, ‘Why should it [Richard’s physical disability] be such a hang-up otherwise?’[unless it was severe]  (Quoted in Sher, 1985,139).

Why would someone be ‘hung-up’ on relentless unnecessary mentions by those around them of a characteristic which was incessantly used as a stick to beat them with? Possibly because the person in question is not made of stone? In Charlotte Brontë’s 1847 novel Jane Eyre, Jane describes the ‘reproach of my dependence’ as being ‘very painful and crushing’, and whilst the descriptions of Richard III were intimately connected with the play’s depiction of him as evil, rather than, as in Jane Eyre, with the dreadful crime of having been sent, as a baby, to live with rich relations who did not want her and never missed an opportunity to tell her so, it seems that he was subjected, sniper-like, to frequent uses of his disability as a way of criticising him, whether or not such criticism was actually valid. Antony Sher’s book talks about how other characters in the play ‘keep’ referring to Richard III as various four-legged creatures, and gives the specific example of his wife, Lady Anne, referring to him as “a lump of foul deformity”. (Sher, 1985,139)  Continuous reminders that one does not belong to the ‘tribe’ in which one happens to find oneself (and that, by extension, those who do belong to it, are not merely reaping the benefits of something that had nothing to do with them at all and thus for which they cannot legitimately claim any credit – well done, Lady Anne – congratulations on your colossal personal achievement!) constitute a process known as Othering, and Sher’s comment that other characters ‘keep’ referring to Richard III as various kinds of four-legged creature suggests that this happens more than once. Looking at the play itself reveals that various characters refer to Richard III as ‘a toad’, ‘a hedgehog’, ‘a bottled spider’, and so on. This takes us back to Sir Thomas More’s description of Richard III as being ‘close and secret’ and ‘outwardly friendly where he inwardly hated’, as one reaction to being Othered might be the development of a character where no-one really gets to know you. This sounds a very modern insight for a play written in about 1592-4, but a lot has been written about how acute Shakespeare’s understanding of psychology was, and of, for example, how Sigmund Freud’s theory of the Oedipus Complex was developed thanks to Freud’s reading of Hamlet. This could be another example of Shakespeare being well ahead of his contemporaries, particularly as one does not have to be disabled to be Othered; one must merely possess a characteristic which sets one apart from others, and which they feel entitled to use against one. This insight may have been lost on Elizabethan theatregoers who simply wanted to boo a villain and enjoy Shakespeare’s rather colourful insults, but that does not mean that it did not exist. It may subsequently have been lost as an insight into the behaviour of a disabled character for several reasons: non-disabled people’s behaviour towards disabled people often goes unquestioned and unnoticed; a perception that there is nothing to say about disability, and so on.   The play opens with Richard III bemoaning his own fate, and this is certainly a more comforting idea for most people – that disability discrimination is somehow less wrong because the disabled person is suffering primarily from the torment of differing from the norm anyway. The modern idea of the social model of disability challenges this, by saying that people are disabled by society’s failure to accommodate them – for example by being sent a letter in an inaccessible format when one is visually impaired, or being unable to get into a station – or the part of a station which one needs – because one is a wheelchair user and the platform can only be reached via a flight of steps. It is ignorant to assume that the social model existed in an era which ended with the death of Queen Elizabeth I in 1603, when it was in fact not suggested until the 1970s. 

In his article in Disability Arts Online, Jeff Wilson gives the example of various non-disabled actors who have played Richard III, and argues that they tend to be extremely athletic, which does not suggest that they really had mobility impairments. (Wilson, 2022,2) On the other hand, the impairment that Richard III is thought to have had – a type of spinal curvature called scoliosis – would apparently not have prevented success on the battlefield and would not have been visible once he was wearing armour. (Vincent-Connolly, 2021,145).

This leaves two questions unanswered. Firstly, was Richard III actually disabled, or was that just a claim made to discredit him? Secondly, what significance does the question have today? 

In answer to the first question, when the skeleton was excavated from its resting-place in the car park in Leicester in September 2012, it was shown that it did indeed have a spinal curvature. It was pronounced, but as it was well-balanced, would probably have resulted in little physical disfigurement, and the fact that the bones of both legs were well-developed suggests that Richard III would probably not have walked with a limp. (Appleby et al, 2014, 1944). Not quite the person described by William Shakespeare and Thomas More.  

In answer to the second question, there has been a persistent perception that Richard III’s reputation needed rehabilitating, but this has not always related to a feeling of fellowship with him due to a real or imputed disability. For example, the Gothic novelist Horace Walpole’s Historic Doubts on the Life and Reign of King Richard the Third was published in 1768 and seems to have been much more preoccupied with the idea that Richard III’s bad reputation was based on the continued failure robustly to interrogate sources which, like Sir Thomas More’s biography of Richard III, were themselves deeply flawed. On the other hand, Philippa Langley seems only to have started looking for Richard III’s remains after she discovered that she felt that they had both been looked down upon because of a perceived disability. In addition, The Lost King relates Langley’s unhappiness with a scoliosis specialist’s tendency to describe Richard III as a ‘hunchback’ – a word which Langley does not explain her dislike of, except to call it “that awful word” which she thought “had been discarded”. (Langley, 2022, 170). She gives the impression of somebody who takes the description of someone else far too personally, but one might suggest that it is bound up with her feelings of kinship towards Richard III, and also with her experiences of feeling judged and improperly understood by the medical profession in particular. In addition, she says that she thought that the word ‘hunchback’ had been discarded. This could be a reference to the controversy surrounding the 1996 Disney film The Hunchback of Notre Dame, based on Victor Hugo’s 1831 novel Notre Dame of Paris. Disney’s decision to use the word ‘hunchback’ to describe the famous character of Quasimodo was among the aspects of the film which were criticized; some disability activists claimed that using the word was pejorative and that it raised various problems which it  made little attempt to solve – chiefly that small children were (allegedly) afraid of the Quasimodo character, something which Disney’s attempts to make him less frightening had not solved, as his character might still cause small children to recoil, and refer to disabled people in general as ‘hunchbacks’. In addition, the film gave the impression that all disabled people were physically unattractive. (Knight-Ridder, 1996) One of Disney’s executives, Peter Schneider, said that they ‘had’ to use the word, but it is unclear why he thought that Disney was so powerless that it could not have avoided using a contentious word, particularly as the film’s advertisement posters made no mention of Victor Hugo (something which angered Hugo’s descendants), and the book is often known as Notre Dame of Paris anyway. (Strauss, 1996)

‘Nobody tweaks the Bard’

I came across this claim a few months ago, made in a television drama by a character directing a Shakespeare play, and I thought it was ridiculous. Everyone tweaks the Bard. Well, not everyone, obviously. A significant number of people have, though, whether in terms of changing the era or the location of one of Shakespeare’s plays to make a point, and Shakespeare is often known as ‘The Bard of Avon’ to reflect this. As far as disability is concerned, the most recent ‘tweak’ is the 2024 production of Richard III which starred Michelle Terry in the title role and had a cast that was exclusively female or non-binary. Despite its commitment to other kinds of modern concerns (in addition to its casting, the play explored ideas of toxic masculinity), it seemed clear from a Q & A session with two cast members (Helen Schlesinger and Katie Erich) that I went to as part of a Richard III study day at the Globe Theatre in London in August 2024 that the cast rather felt that the controversy surrounding Terry’s decision to erase Richard III’s disability had rained on their parade. As one cast member, Katie Erich, used British Sign Language, and brought a British Sign Language interpreter along to the Q & A, it was surprising that, unlike Philippa Langley, she seemed to feel no solidarity with Richard. It may have been that Erich viewed herself as a member of a linguistic minority rather than as a disabled person, and she may simply have seen British Sign Language as something which enabled her to do her job without the necessity of having to lip-read her colleagues as well. It seems that one thing to consider is that seeing disability as a purely individual phenomenon helps to encourage the idea that no ethical questions arise from it.

Dr Emmeline Burdett is an independent researcher.

_____________________

References:
Appleby et al. ‘The scoliosis of Richard III, last Plantagenet King of England, diagnosis and clinical significance’, The Lancet, 2014 (vol.383), p. 1944.
British Library, https://www.bl.uk/collection-items/richard-iii-portrait-with-overpaint-c-1504-20
Langley, P. and Jones, M. (2022) The Lost King: The Search for Richard III. John Murray.
Sher, A. (1985). Year of the King. Nick Hern Books.
Shakespeare, W. (2000). The Tragedy of King Richard III. Oxford World’s Classics.
Strauss, Bob. ‘Courting controversy? Disney’s Newest Animated Feature, ‘The Hunchback of Notre Dame’, Takes On Sensitive Adult Issues’, (1996), Sunday, June 23rd.
Vincent-Connolly, P. (2021). Disability and the Tudors: All the King’s Fools. Pen and Sword Books.
Wilson, J. ‘Cripping Richard III’. Disability Arts Online, (2022), October 3rd.
Wolfe Knight-Ridder, Kathi, ‘Another Burden for the Disabled’, The Spokesman Review, (1996), Wednesday, July 3rd.
 

Recommended citation: Emmeline Burdett (2025): "Thou lump of foul deformity". Richard III, William Shakespeare, and The Lost King. In: Public Disability History 10 (2025) 3.

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The Forgotten Room of the association Valentin Haüy in Paris, or How to Build an Inclusive Digitisation Project on the History of Blindness

By Céline Roussel & Marion Chottin

Rediscovering Maurice de la Sizeranne’s Cultural Project

As Marion and I were exploring for our academic research – for CNRS-projects on the one hand, for a doctoral thesis at Paris-Sorbonne on the other – the field of disability studies, with a focus on blindness related to philosophy, literature, and other arts, we made the acquaintance of Noëlle Roy, curator of the museum and library in the Association Valentin Haüy from 2000 to 2017. She led us into a very special room, the “salle Heimann” (“Heimann room”), which houses the great oeuvre of Maurice de la Sizeranne (1857-1924): a huge, rich, unique collection of books, writings and all kinds of documents reflecting on blindness throughout the centuries.

Maurice de la Sizeranne was a blind intellectual who, in the year 1889, founded the Association in the memory of Valentin Haüy. Haüy (1745-1822) was a French polymath who had founded the first school for blind young people, the Institute for Blind Youth ((INJA) in Paris in 1785. Maurice de la Sizeranne belongs to an influential generation of French blind people who became conscious of the importance of culture as a powerful way of achieving greater integration in the dominant sighted society. The museum and the library, both created just before the Association was born, were the fundamental pillar of this vision. They aimed at the intellectual emancipation of blind people by their own means, in accordance with Haüy’s teachings. Marion and I soon felt how much the library was inhabited by the spirits of both men and was the crossroads of countless others who were only waiting to be discovered, read, and heard again. Amongst them were Milton, Maria-Theresia von Paradis, Helen Keller, Borges, Taha Hussein; or Louis Vierne, Axel Munthe, Marie Lenéru, Cécile Douard, Olga Skorokhodova… 

Our visits in this library, which began in 2016 and are ongoing, has gradually revealed to us what marvellous the treasures the library contains, and how many different fields are represented - humanities, medicine, cultural and institutional history, pedagogy, literature, theatre, poetry… Every document deals with blindness, and they have been written by both blind and sighted people, by academics and laypersons. The number of languages represented is similarly impressive - documents not only in French, but in many foreign languages form part of the collections. But our visits had shown how even those familiar with the Association were unaware of the treasures contained within this library, and sometimes even unaware that it existed at all! When Noëlle Roy retired in 2017 (and was awarded the “grade de Chevalier de l’ordre national du Mérite” in June 2018 for her commitment in the Association), the future of these precious collections suddenly became uncertain, and Marion and I proposed our services as volunteers to keep them accessible to international researchers.

The Paradox of the Forgotten Room

A visit to the United States in the autumn of 2017 in connection with my doctoral research led me to several of the most important institutions for the education and history of blind people in America: the Perkins School for the Blind in Watertown, near Boston, the American Foundation for the Blind in New York, the Printing House for the Blind in Louisville, Kentucky. All these institutions were engaged in digitising and publishing their archives at different scales (subsidised projects; in-house digitisation according to the needs of readers; or publications on archives.org: see the links and references below). Their collections convinced me that Marion and I should take charge of the digitisation and scientific edition of the library of the Association Valentin Haüy in Paris.

Another issue also troubled us. This library houses cultural treasures, unique and essential to the understanding of blindness, written by both blind and sighted people: correspondence, press clippings, magazines, manuscripts, valuable books… But all this material is typed or handwritten in ordinary script and not in Braille. How can it be accessible to blind or partially sighted people who wish make use of it without the support of a reader or guide? This library builds up a history page after page – that of access to culture for blind people, that of their full participation in society and their autonomy – but this is contradicted and undermined by the fact that the material contained in the library is in a format inaccessible to blind people, even though it is such an important resource for learning about the history of blind and visually impaired people. This is a paradox that we now have the material and technical possibility to resolve. It is vital that we do so:

“When I started to lose my sight due to congenital glaucoma, I felt the need to know how people who had become blind before me had been able to adapt to continue to read, work and participate in cultural or leisure activities, without forgetting the main thing, the adaptations to daily life. When I wanted to consult sources of information on blindness and testimonies of blind people, I only found a few published books, whereas precious testimonies exist in the heritage collection of the Association Valentin Haüy. Only digitisation can make them accessible, via the screen-reading software used by visually impaired people who cannot read so-called black writing, whether handwritten or printed. Thanks to this colossal work, we will finally be able to access writings never read by blind people or even by the general public. Moreover, the publication of this unique heritage collection online will help to raise awareness of visual impairment among the general public.”

Catherine Grimaud, retired, former employee for accessibility in the disability mission of a large company and volunteer in the actidv employment club of the apiDV association.

By the end of her career, Noëlle Roy had already succeeded in having the two most important reviews for the social and cultural history of blindness in France (the Louis Braille and the Valentin Haüy) digitised and published online on the Gallica website (Bibliothèque nationale de France). The result was nevertheless impaired by the unfortunately poor quality of the OCR (Optical Character Recognition) and by the lack of correction for the voice synthesis, which represents a significant barrier to accessing these documents if one cannot read text on a screen. This is a point that a digitisation project, as we understand it, has to improve in order to be fully accessible – even if it may still exist some language barriers (one has to understand German to read a source written in German!). Such a project would not only contribute to safeguarding some of these old and fragile collections (the big, brittle volumes which contain the press clippings for instance are an urgent priority); it would both benefit partially and non-sighted persons and contribute to preserving the heritage and cultural legacy of blind people.

Another precedent led us to think our aim was realistic: in France, the ArchAT project (2018-2021) led by Aude Déruelle, Professor of French literature at the University of Orléans, and with which the CNRS, among other institutions, is associated, digitised, digitally edited and put online the archives of the blind historian Augustin Thierry (1785-1856). The aim of the project was to provide a better understanding of, for instance, the working techniques of this major nineteenth-century blind intellectual figure (see the link below). I had the chance to participate to it, and Aude Déruelle herself recognized the value of the archival collection of the Bibliothèque patrimoniale Valentin Haüy as she paid a visit to the library, in order to find material about Augustin Thierry. The digitisation project of the collections of the Bibliothèque patrimoniale Valentin Haüy finally began in 2018 and now comprises around twenty people, including members of the Association Valentin Haüy, French and foreign scholars, and staff from the adaptation company L'Atelier de la Villette.

Overview of the Digitisation Project and of Three Collections in The Library

This project has been a challenge. Based on a partnership between the association Valentin Haüy, the ENS of Lyon and Sorbonne Université (Observatoire des textes, des idées et des corpus and Centre de Recherche en Littérature Comparée), it involves a long and demanding processing chain: indexing the collections according to a universal model as the one usually used in libraries and archives, proceeding with digitisation, OCR processing and structuring, upgrading to official digital accessibility standards (in France, the RGAA 4), writing academic explanatory notes… It will offer an academic presentation perfectly understandable by laypersons, and easily accessible to blind and non-blind readers, since each document will be screen-reader and Braille display compatible.

A numeral estimate of the contents of the library resulted in a figure of about 29500 items. Many of them had not been indexed – and none of them to international standards – before the project began. In addition, readers who want to search in the library are still compelled to come in Paris und use the on-site computer, as the library has no online catalogue. The digitisation project will eventually provide online search possibilities. Because of the large number of documents contained in the library, we first decided to focus on three collections : press clippings, periodicals and the collections dedicated to soldiers blinded in the First World War (because the anniversary of the conflict was then being commemorated).

Innumerable press clippings relating to blind people and blindness were collected between 1856 and 1928 and are preserved in large volumes. The articles come from various newspapers (French and foreign) and are grouped under various headings (serials, information on blind people's associations, events, meetings, charity work, history…). This is one of the library's most precious collections, fully representative of the comprehensive approach that has governed the constitution of the collections of this library since its emergence: to constitute an international database on blind people and on blindness. Turning this paper database into a digital one was both important and in accordance with the library’s original aims.

Photograph (© Céline Roussel) showing one of the volumes of press cuttings devoted to blindness (1856 and 1928), on which can be seen an article illustrated with portraits of Valentin Haüy and Louis Braille, as well as a reproduction of the tactile alphabet developed by the latter.

Long before the periodicals Le Valentin Haüy and Le Louis Braille (which were created in 1883 by Maurice de la Sizeranne), several journals set out to bring together the available scientific knowledge on blind people and their education in specialised establishments - while also relaying the personal stories and literary productions of some of them. France was a pioneer in this, but other European countries soon followed suit, and examples include the Messager suisse des aveugles and L'Asile des aveugles de Lausanne. The Bibliothèque patrimoniale came to possess a large collection of periodicals, some of which are in foreign languages (such as Der Blindenfreund and Die Blindenwelt, both published in Germany). The symbolic and historical importance of these works are makes them a priority for the digitisation project.

The library also houses entire collections of periodicals designed to inform soldiers blinded in the First World War about the social networks and rehabilitation centres that were set up at that time to facilitate their reintegration into civilian and working life, and these provide us with an invaluable testimony to this pivotal period in the history of blindness. This is why our first pilot-sample centred on one of the journals in the "Blinded in War" collection of the Bibliothèque patrimoniale: Le Journal des soldats blessés aux yeux. This journal also had the advantage of already being available in digital form on the Paris-Nanterre library website L’Argonnaute: This not only saved us time, but it also showed us how much more ambitious our project was than simply putting a document online – because it involves an XML-TEI structuring and an academic presentation of everything will be published online.

Achievement of a First Pilot-sample: A Future for The Forgotten Library?

Photograph (© Céline Roussel) of the cover of the final issue, dated June 1919, of Le Journal des Soldats Blessés aux Yeux. It states that it was founded by Eugène Brieux, of the Académie Française, that it is monthly, free, and is the 'Organe de l'Œuvre pour les Soldats Blessés au Yeux'.

With the support of the Association Valentin Haüy, and especially of their project manager Hugues de Roquefeuille,, and the expertise of the ObTIC (Observatoire des textes, des idées et des corpus) of Sorbonne Université, in close collaboration with Motasem Alrahabi and Glenn Roe, the academic year 2019-2020 was devoted to the realization of this pilot project. Le Journal des soldats blessés aux yeux, a free monthly magazine founded by Eugène Brieux (1858-1932), a writer, journalist, and member of the Académie française, appeared from November 1916 to June 1919 and was aimed at the soldiers blinded in the First World War. It also gave them a voice in allowing the publication of many of their letters. With this journal, we had the opportunity to test and, when necessary, improve the processing chain on which the whole digitisation project depended. This journal was first indexed according to the Dublin Core and Library of Congress standards, while the researchers of the ObTIC drew up a set of specifications, as well as a first style sheet, necessary for the XML-TEI structuring of the document.

But we encountered some difficulties in establishing a satisfying overview of the logical structure of this document, since the headlines and the chapter-divisions varied from one year (or even from one month!) to another. Many elements (such as quotations, advertising, pictures, and mathematical equations) were widespread in this shape-shifting item and complicated our approach. After many attempts to integrate all these specificities into a stylesheet, we realised that a compromise had to be found, in order to produce a stylesheet general enough to be applicable to other documents. Two employees of L'Atelier de la Villette (which is linked to the association Valentin Haüy and employs people with disabilities), directed by Renaud Lemaire, Isabelle Risco and Rosine Loïal, were then responsible for proofreading and formatting the document according to the style sheet, which lead to satisfying results. We were very keen to work with L’Atelier de la Villette, as this would give disabled people the opportunity to take part into a project dealing with visual disability, The digitisation project would thus become not only accessible, but also inclusive. Finally, three researchers, Gildas Brégain (CNRS-Arènes/Université de Rennes 1), Corinne Doria (The Chinese University of Hong Kong – Shenzhen) and Rebecca Scales (Rochester Institute of Technology), one of whom was personally concerned with disability, wrote scholarly notes on the journal, on Eugène Brieux and on assistive technologies. The purpose of these texts is to provide all necessary information on background and context of this review, making any research on it easier.

This achievement, completed by the success of the ObTIC in generating and designing a website, was all the more encouraging as the association decided to recruit three people, Véronique Harouel, Angelica Herrera and Marie-France Hourcadie, and one person working full time in the library (as part of a sponsorship of competence offered by BNP Paribas), Marie-Bernadette Aubry, whose task is now to index the whole content of the library. We had not expected to reach this stage so early, but it is necessary to conceive the project not only at a small, but at a large scale. The global indexing also draws our attention to documents which, for copyright issues, should be excluded from the final project – even if their reference will be integrated in the online catalogue. With the jurist of the Association, we will debate whether to digitise or not sensitive documents such as personal files, which are undoubtedly interesting for the project, inasmuch as they could allow genealogical research. The website, it is still in construction; how to shape an accessible version of it is constantly debated with the Association and with blind and visually impaired people. Most recently, our project has been associated with another ongoing project, that of Maria Romeiras Amado and her team (Universidade NOVA de Lisboa). This project consists of the transcription, translation (into Portuguese if necessary) and critical edition of 165 letters (in French, English, Spanish and Portuguese) written in the 18th and 19th centuries between several institutions dedicated to blindness in different countries of the world. The objective of this project is to highlight, from these letters between pedagogues, doctors and administrators, the phenomenon of globalisation of the discourse on pedagogy and material adapted to blind pupils as well as their practical effects on the latter, not only through the digital and critical edition of these letters, but also through the constitution of a digital cartography of these circulations As these letters are located in the Valentin Hauy heritage library and are owned by the AVH, Maria Romeiras and her team have very generously agreed to integrate their work into our project, in exchange for permission to publish these letters on the NOVA University website.

Our academic experience in the field of both Disability Studies and Digital Humanities has shown that there is a huge interest for these archive materials. The link between both research fields has already been mentioned in several articles, for instance by Mulka Kurkarni, George H. Williams and Vandana Chaudhry. We are aware that our project has limits – it could be argued that a digital access to archives is no substitute for an exciting discovery of the object itself. The general stylesheets may miss some important and valuable information on the design of a document – selection, per se, is never a fully satisfying solution. We are nevertheless confident that our project will contribute to the fight against what Goggin and Newell (Digital Disability, The Social Construction of Disability in New Media, 2003) called “digital disability”. We truly believe that “by working to meet the needs of disabled people — and by working with disabled people through usability testing but also, and more importantly in our view, through their active participation in editorial choices — the digital humanities community will also benefit significantly as it rethinks its assumptions about how digital devices could and should work with and for people” (George H. Williams, Debates in the Digital Humanities, 2012).

Targeting an audience will be our next challenge: There could be various ways of doing - advertising in our academic networks as well as in the associative structures for blind people the association Valentin Haüy is in contact with. Or, as it is often the case for digitisation projects, by elaborating a newsletter giving words to the team responsible for the project, but also to readers, blind or sighted, to reflect upon the documents they would have access to. A tight collaboration between our academic institutions and the association Valentin Haüy has already opened up hopeful paths in preserving and giving a new life to the cultural and intellectual project of its founder, Maurice de la Sizeranne. Marion and I truly hope it will at length make accessible to anyone the unexpected cultural richness of blindness.

Websites dedicated to digitised blind archives:

https://gallica.bnf.fr/ark:/12148/cb32809419q/date

https://gallica.bnf.fr/ark:/12148/cb32886746c/date

https://www.perkins.org/archives/

https://louis.aph.org/aph-library/#/

https://www.afb.org/HelenKellerArchive

https://bvmm.irht.cnrs.fr/resultRecherche/resultRecherche.php?COMPOSITION_ID=21842

We would like to thank the librarians and curators Jennifer Arnott, Susanna Coit and Jennifer Hale from Perkins, Justin A. Gardner from the American Printing House for the Blind and Helen Selsdon from the American Foundation for the Blind, for having inspired us and even supported us in our project.

Overview of the collections from the library Bibliothèque patrimoniale Valentin Haüy:

• Periodicals (Le Journal des Soldats blessés aux yeux ; Le Mutilé des yeux…)
• Catalogues (Katalog des Museums des Blindenwesens in Wien…)
• Registers (Les Établissements généraux de bienfaisance placés sous le patronage de l’Impératrice…)
• Institutional correspondence (AVH, INJA, institutes abroad in Europe and accross the Atlantic…)
• Historical books (Léon Legrand, Les Quinze-Vingts depuis leur fondation, 1887…)
• Essays (Jacques Lusseyran, Ce que l’on voit sans les yeux, 1958 ; Valentin Haüy, Essai sur l'éducation des aveugles, 1786…)
• Biographies (Pierre Villey, Maurice de la Sizeranne, aveugle, bienfaiteur des aveugles, 1932…)
• Press clippings (Georgette Leblanc, « Hellen Keller, le miracle vivant », Candide, n° 688, 20 mai 1937…)
• Novels (Jacques Lusseyran, Le Silence des hommes, 1954...) Poetry (Jean-François Revoil, Souvenirs, Poésies, 1909…)
• Autobiographies (Jacques Arago, Souvenirs d’un aveugle. Voyage autour du monde, 1844 ; Martin Franquel, Comment je devins aveugle. Épisode de ma vie, 1910…)
• Published diaries (Marie Lenéru, Journal de Marie Lenéru, Précédé du Journal d’enfance, 1945…)
• Collected works (François Coppée, Œuvres complètes, 1886-1888, en 6 tomes…) Plays (Marie Lenéru, La Maison sur le roc, 1927…)
• Manuscripts (Edgar Guilbeau, Ma vie d’élève. Souvenirs sincères d’un octogénaire, 1890…)

References:

Goggin, Gerard, Newell, Christopher, Digital Disability: The Social Construction of Disability in New Media, Maryland, Rowman & Littlefield Publishers, 2003. 

Williams, George H., "Disability, Universal Design, and the Digital Humanities", in Gold, Matthiew K., (ed.), Debates in the Digital Humanities, Minneapolis/London, University of Minnesota Press, 2012. (https://dhdebates.gc.cuny.edu/read/untitled-88c11800-9446-469b-a3be-3fdb36bfbd1e/section/2a59a6fe-3e93-43ae-a42f-1b26d1b4becc)

Photograph (© Jacques Fournier) showing one of the corners of the Bibliothèque patrimoniale, whose two walls on either side house tall wooden cupboards, solid at the bottom and glazed at the top. Some of the library's books can be seen in these glass cabinets, as well as numerous blue files containing brochures, articles and manuscripts on blindness.

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Céline Roussel is scholar at Ludwig-Maximilians University München, Germany. Marion Chottin is scholar at CNRS/Ecole Normale Supérieure de Lyon, France.

Recommended citation

Céline Roussel/ Marion Chottin (2023): The Forgotten Room of the association Valentin Haüy in Paris, or How to Build an Inclusive Digitisation Project on the History of Blindness. In: Public Disabilitiy History 8 (2023) 5.

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