Images of disabled people in children's literature

By Udo Sierck

For the German version of this essay see below.

Literature for children and adolescents evokes thoughts, captures moods, animates actions, reflects socio-historical conditions and states of the present.Therefore, it is astonishing that in the standard works of literary studies on this subject the keyword 'disabled' is usually missing. When it does appear, it appears only in individual studies and is limited to individual periods and rather instructive aspects (e.g. Ammann/ Backofen/ Klattenhoff 1987; Elbrechtz 1979; Nickel 1999; Richlick 2002; Zimmermann 1982). At the same time, there is a tendency in these publications to sort by forms of limitations, following the medical model of disability.

In the stories, narratives and picture books for children and young people, standards are set, values are transported and norms are planted in the memory. In this context, there is the tradition of depicting disabled people and conveying their alleged characteristics. What images do people in German-speaking countries have of themselves and of 'the disabled' in their minds when it comes to these people?

A look at books for children and young people reveals transformations and repetitions, pointing to the supposedly caring segregation of 120 years ago to the inclusive approaches of the present. For this period, an analysis of nearly one hundred books and stories from youth magazines reveals numerous assigned roles for disabled persons. Listed in keyword form are the following selections:

They are the 'problem child' in the family. They are passive, grateful, resigned to their fate, grumpy or tyrannical, but fond of animals. In order to be accepted, disabled children or adults must excel or act heroically (even if they pay for it with their lives). A (physical) abnormality such as a hunchback or facial disfigurement indicates shiftiness and gangsterism. The devil limps and walks on crutches. The war victim deserves admiration. Love and sexuality (almost) never occur, friendships remain platonic. Disability is a test of God that leads to him. With firm faith, impairment disappears like an evil haunting. They are objects of miraculous cures and good deeds. Death offers itself as a salvation for them. They are a burden to the 'healthy people' and symbol of the impending end of the world. Mother, sister or friend, nurse and therapist can fulfill the expected role of women with their care and expect recognition. The medical profession can use them to demonstrate their knowledge. Special facilities are gratefully accepted by them as a necessity.

According to my research, this list is supplemented by aspects from books for children and young people that follow the idea of integration and inclusion. According to this, disabled people are victims of exclusion by institutions and lack of understanding in direct contact. They are funny, eloquent and intelligent. If they are not, they have the charming ability to enjoy the little things in the world and a brother or sister to protect them. They overcome discriminatory experiences, questioning demands and normalcy while liking attempts at normalization. They belong without many words. Or: They explain themselves with many words.

Example in:

Udo Sierck: Bösewicht, Sorgenkind, Alltagsheld. 120 Jahre Behindertenbilder in der Kinder- und Jugendliteratur. Weinheim: Beltz 2021.

The United Nations Convention on the Rights of Persons with Disabilities requires the media to help raise awareness. For this goal, clichés and prejudices are to be avoided in publications, and instead the abilities of disabled people are to be placed in the foreground. The implementation of this requirement appears to be challenging in view of the multitude of stereotypical thought patterns. After all, there is a cultural background in society consisting of judgments, opinions and ideas that change but do not simply disappear 'in the blink of an eye'.

It is not hopeless, because in the case of the complementary, repetitive and contradictory attributions, developments can be seen over the period of a good 120 years. These changes are influenced by political conditions. The times of propagated segregation since the middle of the 19th century also produced objects of care in children's and youth literature; with the tendency towards integration, subjects have been recognizable for a good forty years. The individual handicapped person is no longer and exclusively reduced to a medically recognizable defect, which he or she has to take individual responsibility for and, if possible, compensate for or remedy. With the description of the accompanying social circumstances, books for children and young people also incorporate the approach and hope that instead of isolation through joint action, changes can be brought about that oppose exclusion and discrimination.

More detailed in:
Udo Sierck: Bösewicht, Sorgenkind, Alltagsheld. 120 Jahre Behindertenbilder in der Kinder- und Jugendliteratur, Weinheim: Beltz 2021. 

Udo Sierck is an author and lecturer.

____________________________________

References:

Ammann, Wiebke/ Backofen, Ulrike/ Klattenhoff, Klaus (eds.) (1987): Sorgenkinder - Kindersorgen. Behindert-werden und Behindert-sein als Thema in Kinder- und Jugendbüchern [Becoming and being disabled as a theme in children's and young people's books], Oldenburg.
Elbrechtz, Renate (1979): Die Behindertenproblematik in der Kinder- und Jugendliteratur. In: Didaktik der Jugendliteratur, ed. by Jutta Grützmacher, Stuttgart, pp.263-269.
Nickel, Sven (1999): Gesellschaftliche Reaktionen auf Menschen mit (geistiger) Behinderung in der Kinder- und Jugendliteratur. In: www.bidok.uibk.ac.at (retrieved 24.04.20).
Richlick, Elke (2002): Zwerge und Kleingestaltige in der Kinder- und Jugendliteratur vom Beginn des 19.Jahrhunderts bis zur Gegenwart; Frankfurt a.M./Berlin u.a.
Zimmermann, Rosemarie (1982): Behinderte in der realistischen Kinder- und Jugenderzählung. In: Massenmedien und Behinderte. ed. by Hans J. Kagelmann and Rosemarie Zimmermann, Weinheim/Basel, pp.177-206.

 

Recommended citation:

Udo Sierck (2021): Images of disabled people in children's literature. In: Public Disability History 6 (2021) 4.

____________

German version

Behindertenbilder in der Kinder- und Jugendliteratur

Kinder- und Jugendliteratur hinterlässt Gedanken, fängt Stimmungen ein, animiert zu Handlungen, spiegelt sozialhistorische Bedingungen und Zustände der Gegenwart wider. Umso erstaunlicher ist es, dass in den Standardwerken zu diesem Fachgebiet ein Stichwort ‚Behinderte‘ o.ä. in der Regel fehlt oder in vereinzelten Untersuchungen ein detaillierter Entwicklungsprozess sich auf einzelne Zeitabschnitte, überschaubare Publikationen und didaktische Fragestellungen beschränkt (u.a. Ammann/ Backofen/ Klattenhoff 1987; Elbrechtz 1979; Nickel 1999; Richlick 2002; Zimmermann 1982). Gleichzeitig gibt es bei diesen Veröffentlichungen die Tendenz, nach Formen der Einschränkungen zu sortieren und damit dem medizinischen Modell von Behinderung zu folgen.

In den Geschichten, Erzählungen und Bilderbüchern für Kinder und Jugendliche werden Maßstäbe gesetzt, Werte transportiert und Normen ins Gedächtnis gepflanzt. In diesem Zusammenhang steht die Tradition der Darstellung behinderter Menschen und die Vermittlung ihrer angeblichen Eigenschaften. Welche Bilder haben die Personen im deutschsprachigen Raum von sich und von ‚den Behinderten‘ im Kopf, wenn es um diese Menschen geht?

Der Blick in die Kinder- und Jugendliteratur zeigt Wandlungen und Wiederholungen, er weist auf die angeblich fürsorgliche Aussonderung vor 120 Jahren bis hin zu den inklusiven Ansätzen der Gegenwart. Für diesen Zeitraum lassen sich bei der Analyse von fast hundert Büchern und Erzählungen aus Jugendzeitschriften zahlreiche zugedachte Rollen für behinderte Personen benennen. Stichwortartig aufgelistet stehen zur Auswahl:
Sie sind das ‚Sorgenkind‘ in der Familie. Sie sind passiv, dankbar, in ihr Schicksal ergeben, mürrisch oder tyrannisch, aber tierlieb. Um akzeptiert zu werden, müssen behinderte Kinder oder Erwachsene Herausragendes leisten oder heldenhaft agieren (auch wenn sie dafür mit dem Leben zahlen). Eine (körperliche) Auffälligkeit wie Buckel oder Gesichtsentstellungen deuten auf Verschlagenheit und Gangstertum. Der Teufel hinkt und läuft an Krücken. Das Kriegsopfer verdient Bewunderung. Liebe und Sexualität kommen (fast) nie vor, Freundschaften bleiben platonisch. Behinderung ist eine Prüfung Gottes, die zu ihm führt. Bei festem Glauben verschwindet die Beeinträchtigung wie ein böser Spuk. Sie sind Objekte der Wunderheilungen und der guten Tat. Der Tod bietet sich für sie als eine Erlösung an. Sie sind eine Last für das ‚gesunde Volk‘ und Symbol für das drohende Ende der Welt. Mutter, Schwester oder Freundin, Krankenschwester und Therapeutin können mit ihrer Pflege die erwartete Frauenrolle erfüllen und Anerkennung erwarten. Die Ärzteschaft kann an ihnen ihr Wissen demonstrieren. Sondereinrichtungen werden von ihnen als Notwendigkeit dankbar angenommen.

Nach meiner Untersuchung wird diese Liste durch Aspekte aus Kinder- und Jugendbüchern ergänzt, die dem Gedanken der Integration und Inklusion folgen. Demnach sind behinderte Personen Opfer von Ausgrenzung durch Institutionen und Unverständnis im direkten Umgang. Sie sind witzig, redegewandt und intelligent. Wenn sie das nicht sind, haben sie die charmante Fähigkeit, sich über die kleinen Dinge in der Welt zu freuen und einen Bruder oder eine Schwester, die sie beschützen. Sie überwinden diskriminierende Erfahrungen, stellen Forderungen und die Normalität in Frage und finden gleichzeitig Normalisierungsversuche gut. Sie gehören ohne viele Worte dazu. Oder: Sie erklären sich mit vielen Worten.

Beispiel aus:

Udo Sierck: Bösewicht, Sorgenkind, Alltagsheld. 120 Jahre Behindertenbilder in der Kinder- und Jugendliteratur. Weinheim: Beltz 2021.

Die Behindertenrechtskonvention der Vereinten Nationen verlangt von den Medien, zur Bewusstseinsbildung beizutragen. Für dieses Ziel sollen in Veröffentlichungen Klischees und Vorurteile vermieden werden, stattdessen die Fähigkeiten behinderter Menschen in den Vordergrund gestellt werden. Die Umsetzung dieser Vorgabe erscheint angesichts der Vielzahl der stereotypen Denkmuster anspruchsvoll. Schließlich existiert in der Gesellschaft ein kultureller Hintergrund, bestehend aus Urteilen, Meinungen und Vorstellungen, die sich verändern, aber nicht einfach ‚im Handumdrehen‘ verschwinden.

Aussichtslos ist es nicht, denn bei den sich ergänzenden, sich wiederholenden und sich widersprechenden Zuschreibungen sind über den Zeitraum von gut 120 Jahren betrachtet Entwicklungen erkennbar. Diese Veränderungen sind von den politischen Bedingungen beeinflusst. Die Zeiten der propagierten Aussonderung seit der Mitte des 19. Jahrhunderts produzierten auch in der Kinder-und Jugendliteratur Objekte der Fürsorge, mit der Tendenz zur Integration sind seit gut vierzig Jahren Subjekte erkennbar. Die einzelne behinderte Person ist nicht länger und ausschließlich auf einen medizinisch erkennbaren Defekt reduziert, den sie individuell zu verantworten und möglichst auszugleichen oder zu beheben hat. Mit der Schilderung der sozialen Begleitumstände fließt auch im Kinder- und Jugendbuch der Ansatz und die Hoffnung ein, statt Vereinzelung durch gemeinsames Handeln Veränderungen bewirken zu können, die der Ausgrenzung und Diskriminierung entgegenstehen.

Ausführlich in:
Udo Sierck: Bösewicht, Sorgenkind, Alltagsheld. 120 Jahre Behindertenbilder in der Kinder- und Jugendliteratur, Beltz 2021. 

Udo Sierck ist Autor und Dozent.

____________________________________

Literatur:

Ammann, Wiebke/ Backofen, Ulrike/ Klattenhoff, Klaus (eds.) (1987): Sorgenkinder - Kindersorgen. Behindert-werden und Behindert-sein als Thema in Kinder- und Jugendbüchern [Becoming and being disabled as a theme in children's and young people's books], Oldenburg.
Elbrechtz, Renate (1979): Die Behindertenproblematik in der Kinder- und Jugendliteratur. In: Didaktik der Jugendliteratur, ed. by Jutta Grützmacher, Stuttgart, pp.263-269.
Nickel, Sven (1999): Gesellschaftliche Reaktionen auf Menschen mit (geistiger) Behinderung in der Kinder- und Jugendliteratur. In: www.bidok.uibk.ac.at (retrieved 24.04.20).
Richlick, Elke (2002): Zwerge und Kleingestaltige in der Kinder- und Jugendliteratur vom Beginn des 19.Jahrhunderts bis zur Gegenwart; Frankfurt a.M./Berlin u.a.
Zimmermann, Rosemarie (1982): Behinderte in der realistischen Kinder- und Jugenderzählung. In: Massenmedien und Behinderte. ed. by Hans J. Kagelmann and Rosemarie Zimmermann, Weinheim/Basel, pp.177-206.

 

Empfohlene Zitierweise:

Udo Sierck (2021): Images of disabled people in children's literature. In: Public Disability History 6 (2021) 4.

 

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Asylum “Ghost Tours” are Grotesque Tours

By Tracy Mack and Geoffrey Reaume 

Abandoned or renovated psychiatric asylums have inspired countless urban legends and ghost stories, overshadowing the lives of the people who lived, worked, and died there, with most of their histories remaining untold. Building on this folklore, ‘ghost tours’ of former psychiatric hospitals have become a popular attraction in which the historical lives of asylum inmates are portrayed as still being present, this time as “ghosts” haunting the grounds. These guided tours of asylum premises are presented as educational and entertainment but are actually exploitative and stigmatizing. Being a patient in a psychiatric facility is not an enjoyable experience. Not in the past. Not today. It is not fun to be feared, laughed at and held up as examples of voyeuristic glares by people because of one's psychiatric history. Yet, this is what happens with “ghost” tours. It encourages precisely this sort of prejudice. Even after previous protests, it is still happening.

 

Humber College is one of those institutions which has, and currently does, sponsor tours of the old psychiatric buildings that specifically link the site with ghoulishness despite the uproar by mad activists and allies. The Mimico Insane Asylum (now Humber College) was located in what is now Etobicoke, Ontario, Canada, the western part of Toronto. It operated under various names from 1890 until closing in 1979. By the early 2000s, it re-opened as a community college which included old asylum buildings which were renovated for educational and administrative purposes.

 

In re-using the old Mimico asylum grounds as an educational facility, a professor at Humber College has mystified its history in a way that promotes the worst stereotypes about psychiatric patients as people to be frightened of, like an other-worldly figure in a gothic horror story. This is a problem that goes far beyond this one former asylum. As reports from Sweden and the United States indicate, people who do not identify as having a psychiatric history use the grounds of old asylums to perpetuate voyeuristic, stereotyped views of what these places represent with so-called “ghost” tours. By focusing on the activities at one Canadian institution, the purpose of this blog post is to emphasize the ongoing discrimination towards people deemed mad and how it is reinforced every time a “ghost tour” occurs.

 

In 2010, “The Powerhouse of Terror,” a Halloween tour of the underground tunnels of the old Mimico asylum, was denounced by the mad community and allies, yet it still took place. In 2014, the tour was named the Lakeshore Tunnel Tours. Co-author Tracy Mack took notes from a 2014 tour (these quotes are from a recording of the tour and were then documented in 2014 in the effort to mobilize and stop the tour from occurring). Before the tour began, Professor Steve Bang, a business professor, self-declared “unofficial historic tour leader” told the group to look out for an orb, a round speckled object floating about which, in this case, is associated with ghostly apparitions. Bang was dressed in a black robe, a hat from around 1800 and a glass lantern. Bang stated that the orb was actually the nurse who hung herself after being caught having an affair with a patient.

 

Further down the hallway, Bang told the group that the patients built the tunnels themselves in order to be kept occupied. That patients built these tunnels is correct, but it took years of unpaid hard physical labour to construct the buildings and tunnels. Inmates also repaired the buildings, transported coal into the asylum, washed and mended clothing, worked on farms, and gardened all in the name of work therapy, but it was, in fact, outright exploitation of patients' unpaid labor.

 

Less than a mile away there are 1511 mostly unmarked graves, all inmates who died while institutionalized at this psychiatric hospital.  Yet, this was not ghostly enough to speak about during the tour attended by a co-author of this article. Upon seeing a series of indents above the walls, Bang explained that the indents were once windows. He stated that the hallways were lit by candles at night. Further down the hallway, we came across many rusted bolts in the wall. “Those bolts used to be for shackles,” said Bang. Patients were shackled to the wall when they were having an “episode”. Basically, “men and women sat with their hands banded together by shackles while they screamed in the glow of the candle-lit hallways”, he said. As the institution was separated by gender this could not have occurred, certainly not in the way described. Electricity was widely available in this part of Ontario by the early 20th century. Candlelight would not have been used during most, if not all, of this institution’s history, rendering this claim even more suspect – unless it helps to sell a “ghost” story which is “scarier” with an image of flickering candles in a dark, underground space. Next, participants saw a couple of caged cells in the walls. Bang said that “the jail cells were for the bad patients”, but never explained what he meant by “bad patients,” an extremely dubious term in the context of people confined in these institutions.  These tales are akin to folklore and made up ghost stories, though presented as historical facts. A serious tour would discuss controversial topics including the exploitation of unpaid patient labour; abuse and isolation of patients from the outside world; and the contentious nature of diagnostic categories which were influenced by biases based on class, race, gender and disability. In recent years, Humber College, through their interpretive centre, has offered a serious and respectful historical tour of the grounds which is distinct from the “ghostly” tour being critiqued here.

 

Yet, Humber College allows Professor Bang to continue to promote “ghostly” tours years after the criticisms expressed in this blog were first made public. On his website, dated 2021, he states:

you might find me leading a group of teachers, students or visitors through the attics and tunnels of the Lakeshore cottages in search of the ever elusive Ghost of the Asylum. For more information click on the links provided or send me an e-mail to arrange your own private tour.

In 2014, a Halloween tour was planned that would have continued the imagery that psychiatric inmates are people who are nothing more than titillating entertainment to get a good scare out of, or laugh at, on a night when fear is promoted as a source of fun.  The co-authors of this article met with the Principal of Humber College, Wanda Buote, and Professor Bang. They stated that it was not their intent to exploit this history but to allow their students to hear more about the history of their grounds. Although they admitted that there was some folklore, they emphasized that it was not something they focused on and that they were working hard to reduce the stigma around mental health. At one point during the meeting, Professor Bang was asked if Humber College had previously been a residential school, would he lead tours, adding in ghost stories to Indigenous history, while dressed up in Indigenous attire. He whole-heartedly said yes, without a second to think about the question’s implications. Humber did not cancel the tour due to this meeting, however, the event was cancelled the morning of the tour due to a protest that was going to occur by the mad community and allies.  Despite this, in 2015 the organizer had another ghost tour, just after Halloween, evident by the poster below in which he wears clothing while carrying an irrelevant prop – a glass lantern – that has nothing to do with the actual asylum history of this site. Instead, the image suggests a costume that might have been worn by a night watchman  about a century before the Mimico institution opened.

2015 poster advertising Mimico Asylum history tour.

 

Tours through old institutions that are respectful and sensitive of the history and experiences of the psychiatric inmates who were held there are extremely important.  We need to remember this past, the traumas it produced, and how institutionalization functioned as a disabling process contributing to the marginalization and oppression of people deemed mad and intellectually disabled. Yet, ongoing ghost tours contradict and undercut this important work around the history of institutionalization by promoting offensive stereotypes around people with mental disabilities and erasing the salient history of the institution by constructing the facility as "haunted." This transforms the old parts of the hospital from a mindful memorial into public amusement which erases abuses and reduces asylum inmates to passive silence when their memory is not otherwise being used to “scare” people.

 

History needs to preserved and the untold stories need to be respectfully heard. How do we memorialize pasts filled with abuse and torture? Algoma University in Sault Ste. Marie, Ontario, Canada is one example. The main building was the Shingwauk Residential School that closed in 1970. The university runs an archive on residential schools where they have gathered the records of many children who were incarcerated there and in other residential schools. The university offers not only courses but a degree program in Anishinaabe studies. In every class, in every department, Indigenous Studies are intertwined within the courses. Within the walls of that university, no one is permitted to speak ill of Indigenous people or their past. As a former student of Algoma University, co-author Tracy Mack left not only with a degree but with a wealth of invaluable knowledge regarding Indigenous issues that are ingrained in the overall learning process.  This is how histories filled with abuse and torture should be remembered and memorialized – with the greatest respect and care.

 

To link the histories of inmates who once lived, worked and died in former asylums with "frightening" imagery is to perpetuate the worst type of stereotypes and discriminatory attitudes towards one of the most marginalized disabled communities. Treatment in public institutions during the period when asylums like Mimico were operating were often horrific with well documented cases of physical, verbal and sexual abuse. It is inappropriate to turn such monumental human tragedy into ghost stories.  As educators, we have a responsibility to replace folklore with factual histories and in the process pay respect to those who lived and died there.

 

Ghost tours are grotesque tours which insult the memory of deceased psychiatric patients and inflict real harm on the daily lives of people experiencing mental distress today. People who lead such tours have to ask themselves – what is it about people who were in these institutions that permits their caricature as “ghosts” when, in another context, such scare-mongering mystification of a marginalized population would never be permitted?

 

Tracy Mack has a PhD in Critical Disability Studies at York University in Toronto, Ontario, Canada.

Geoffrey Reaume teaches mad people´s history and disability history in the Critical Disability Studies program at York University, Toronto, Ontario, Canada. 

_____________________

Suggested readings:

Eghigian, G. (2010, September 15). Who’s haunting whom? The new fad in asylum tourism” Psychiatric Times, reposted to H-Madness: https://historypsychiatry.com/2010/09/15/september-psychiatric-times-post-whos-haunting-whom-the-new-fad-in-asylum-tourism/

Goar, C. (2010, October 26). Goar: Horror show for former patients. The Toronto Star. https://www.thestar.com/opinion/editorialopinion/2010/10/26/goar_horror_show_for_former_patients.html

Jackson, K. (2018). A textual analysis of newspapers, madness, and the Lakeshore psychiatric hospital. Critical Disabilities Discourses, 8: 98-126. https://cdd.journals.yorku.ca/index.php/cdd/article/view/39728/35970

Punzi, E. (2019). Ghost walks or thoughtful remembrance: How should the heritage of psychiatry be approached? Journal of Critical Psychology, Counselling and Psychotherapy, 19(4): 242-249.

 

Recommended citation:  

Tracy Mack & Geoffrey Reaume  (2021): Asylum “Ghost Tours” are Grotesque Tours. In: Public Disability History 6 (2021) 3.

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Problematic Icons: Greta Thunberg and Helen Keller

By Emmeline Burdett

 

Spitting Image

The British satirical puppet show Spitting Image was originally broadcast on the TV station ITV between 1984 and 1996, but it has recently been revived. As the show satirises politicians and other public figures, it is inevitable that the puppets featured in the revival are different from the ones in the original programme One of the puppets in the revival is of teenage Swedish climate activist Greta Thunberg. This has led to claims that Spitting Image is not satirising Thunberg as an individual public figure, but instead encouraging the public to regard all autistic people as figures of fun. This is far from the first time that Thunberg’s autism has been portrayed as something which makes her very vulnerable, and means that criticism of her is unfair. Some of her detractors have gone further and suggested that it also means that her perception of reality is flawed, and thus that what she says about climate change is unreliable.

 

The inability to accept Greta Thunberg as a person with an informed opinion on an issue she considers important links her to public reactions with which Helen Keller (1880-1968) was also confronted. Keller was deaf-blind, and though it is in connection with this that she is most well-known, she was active in many other causes – she was a committed socialist, she supported civil rights for black people, she supported women who took direct action as part of their campaign to get the vote and opposed the United States’ preparation for war. (Crow 2000: 10) Despite this, Keller herself recognised that her opinions on these other issues were often not given the attention they deserved. In a letter to Senator Robert M. la Follette in 1924, she wrote

‘So as long as I confine my activities to social service and the blind, they compliment me extravagantly, calling me the ‘archpriestess of the sightless’, ‘wonder woman’, and ‘modern miracle’, but when it comes to a discussion of a burning social or political issue, especially if I happen to be, as I so often am, on the unpopular side, the tone changes completely’. (Keller 1924)

This change of tone varied from the insistence that, as a deaf-blind woman, Keller could know nothing of ‘the real world’, and that her ‘mistakes spring out of the limitations of her development’, to ‘the pathetic exploitation of poor Helen Keller’. (Crow 2000: 21)

Additionally, there was the suspicion that Keller was the puppet of her teacher, Annie Sullivan, and this was expressed most vividly in the insistence that Keller’s socialist convictions were not her own, but Sullivan’s. (Ibid.: 22) Conversely, though, it was often the case that Helen Keller did not experience the same violent opposition to her beliefs that a non-disabled person would have done. (Filippeli 1999)

The British disabled artist, writer and activist Liz Crow argued convincingly that the motivation for these reactions was that, by having opinions on issues other than her disability, Helen Keller showed herself to be a real human being, and that this threatened the saint-like image that the American public had of her. (Crow 2000: 13)

Helen Keller’s opinions on issues other than blindness did not attract the same censure from opponents as they did for non-disabled people, but at the same time, they were often not taken seriously either. This is interesting to consider in the context of reactions to Greta Thunberg. One description of Keller states that ‘her politics for anyone else would have got her lynched’ (ibid.), because of the reference to lynching, one assumes that this refers specifically to her support for civil rights for black people.

The reference to lynching is also a link between Keller and Thunberg, because an effigy of Thunberg did get lynched during the course of a climate protest in Rome. Similarly, Greta Thunberg’s promotion of environmental issues has made her many enemies. As well as the widespread hatred to which she has been subjected, particularly on social media, she has also become the target of more powerful enemies. Climate activism threatens a number of interest groups, and most of these are supported by the US President Donald Trump. On hearing that Greta Thunberg had been awarded Time magazine’s ‘Person of the Year’, in December 2019, Trump tweeted:

‘So ridiculous. Greta must work on her Anger Management problem, then go to a good old-fashioned movie with a friend. Chill, Greta, chill!’

As mentioned above, other people have argued that, because of her autism, Thunberg is too vulnerable to be laughed at, criticised – the implication is that she is too vulnerable to be a public figure at all. In relation to Donald Trump’s criticism of Thunberg, a woman wrote to the Washington Post to suggest that Trump was ‘cyberbullying’ Thunberg, and that this was particularly the case as autism is a ‘protected disability’.  This attitude is well-meant but patronising – it sought to protect Thunberg, even though she frequently (including on this occasion) responded to Trump’s sour tweets by pointedly incorporating them into her own Twitter profile.

Greta Thunberg has explained repeatedly why being on the autistic spectrum is beneficial to her climate activism. In an interview on BBC Radio 4, she said: ‘Being different is a gift. It makes me see things from outside the box. I don’t easily fall for lies; I can see through things. If I would have been like everyone else, I wouldn’t have started this school strike for instance’. Though it is perhaps surprising, there were also people who made similar arguments in relation to Helen Keller. For example, a newspaper cutting in the American Foundation for the Blind’s Helen Keller Archive argued that the fact that Helen Keller had risen to such great heights despite having only three of the usual five senses was proof of both her intelligence and the truth of Socialism. In addition, the article referred to those who doubted Socialism despite being in possession of the usual number of senses as being ‘deaf, dumb and blind’. This might not have been a majority view, but it is an ingenious and very interesting argument.

Credits:

Courtesy of the American Foundation for the Blind, Helen Keller Archive: www.afb.org

Link to full picture.

Criticisms of the Spitting Image character has come from many other quarters, including from people who are also autistic. For example, the journalist and blogger Lydia Wilkins has argued that, by using the puppet, Spitting Image was mocking Thunberg’s autism, and that for this reason, they should have decided not to include her.  Wilkins pointed to the puppet’s ‘stereotypical’ autistic traits, such as a flat voice and a lack of humour, to support this, but on the other hand, one might argue that Thunberg does possess these characteristics, and Spitting Image was exaggerating them, because it’s satire and that’s what satire does. Seen from this point of view, exaggerating Thunberg’s voice could be considered as being no different from the fact that the puppet has extremely prominent pigtails. It is also important to note that Thunberg herself seems to approve of ‘her’ puppet.

In other words, whilst neither Keller nor Thunberg have asked for special treatment for themselves, many people around them have been hampered by their own pre-existing ideas about the effects that a disability has on someone’s reliability and/or fitness to be a public figure. And yet, the questions raised are somewhat different.  Lydia Wilkins’ motives are not the same as those of the woman who accused Donald Trump of ‘cyberbullying’ Thunberg, but they are both ignoring Thunberg’s own strengths. Similarly, people who sought to defend Helen Keller by accusing others of ‘exploiting’ her were ignoring Keller’s own ability to understand and contribute to debates – presumably because they could not get the idea of her being very ‘vulnerable’ out of their heads. In some respects, both Keller and Thunberg have been just as misunderstood by their supporters as by their detractors.

 

Emmeline Burdett is an independent researcher and a recurring contributor to this blog as well as to other magazines like Disability Arts Online, The Female Spectator and Silly Linguistics. Her research focus lies on Disability Studies where she has written several book chapters about.

 

_________________

References:

Liz Crow, ‘Helen Keller: Rethinking the Problematic Icon’, Disability and Society vol. 15 (6) 2000.
Helen Keller to Senator Robert M. la Follette (1924), in P. Foner (ed.), Helen Keller: Her Socialist Years (New York: International Publishers, 1967), 113-115.

Filippeli, S. (1999), Interview transcript, The Real Helen Keller, (Channel 4 Television).

Recommended citation:

Emmeline Burdett (2021): Problematic Icons. Greta Thunberg and Helen Keller. In: Public Disability History 6 (2021) 2.

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Does literature ever give anything other than a negative image of disability?

By Flora Amann

“Does disability ever represent anything other than a negative image?” In 1998, Paul Longmore, a pioneer of the Society for Disability Studies (London, UK), had chosen this unsettling question to open a conference regarding the disabled bodies in European painting given by Henri-Jacques Stiker.  In his presentation, he showed how images of disability allowed modern European culture to portray corrupt humanity but also to acknowledge its lower instincts. The discussion which followed met with this pitfall: if the fiction of misery was paralleled with the representation of disabled bodies, could the fiction of disability represent something else than miserable people?  This debate led two members of the Society, David T. Mitchell and Sharon L. Snyder, to theorize the humanities’ input for Disability Studies. Through a quick investigation around the character of the “mute” aristocrat and its links with speeches on deafness in post-revolutionary French sentimental novels, this contribution will attempt to tackle this subject.

Anatole by Sophie Gay (1815) is well known by 19th-century specialists for the coherence which it creates between its form and its subject: until the very end, the novel silences the deafness of its eponymous character, Anatole, as if to mime his muteness. The character’s disability is harmoniously entwined within a sentimental plot which readers applauded. Valentine, a young and fair provincial widow discovers the worldly intrigues of Paris and takes a long time to discover that the handsome stranger who saved her from under the wheels of a carriage in front of the Opera is a young aristocrat plagued with birth deafness.

Though Anatole’s deafness may appear at first as a variation on the commonplaces of the sentimental novel of the time (the silent language of love, communication through gestures and shares, shy silences and unspoken words), it finally serves as a satire of salons, worldly morals and perverted language which is one of its symptoms. Those who wield it are the actual infirm of the novel: Valentine hence mention society’s defects as “these incurable infirmities which one has to tolerate in others, but from which one should remain guarded against”. The novel’s message indeed lies in the fate it stores for Valentine’s stepsister, the very indiscrete Madame de Nangis, who has as much taste for infidelity as for gossip. When her rashness eventually leads her to being caught, she suddenly falls into “muteness” herself. By contrast, the outcome of the novel redeems Anatole by both unveiling his hidden mysteries and the purity of his intents.

Far from being enthralled by the deprivation of hearing, it thus seems that Sophie Gay was enraptured by its corollary, mutism and this element entices one to study the interdiscursive links entwining the novel and its political and social context. The new political and scientific revolutionary elites had indeed granted a great role to the education of the deaf in their social regeneration program while the “Declaration of the Rights of Man and of the Citizen” of 1789 had placed deliberation as the principal means of construction of a reciprocal political and civic space. Speech was also the sole medium for the universal principles proclaimed by the revolutionary regime.  Finally, on a more anecdotic level, one has to be reminded of a legal case which made the news between 1776 and 1792 and which questioned the links between speech and social origin: the Solar case, stirred by the abbé de L’Épee, who claimed he had welcomed into his own home a deaf and noble child. The case, with its many twists and turns, was wildly advertised, mostly by the abbé himself, which spread several versions of the story in the press. In that context, it is not surprising that Sophie Gay chose a deaf(-mute) character to criticize the verbal disorders which she blames the Revolution for. The study of Anatole thus confirms what Mitchell & Snyder have showed: the specificity of the literary speech on disability is only able to function as long as it is replaced within its political, social, intellectual and artistic context.

Joseph, count of Solar. Print by Jean-François Janinet, Paris, 1777. Source: Gallica, Bibliothèque nationale de France.

Anatole thus provides us with the possibility of a mutual enrichment of literature history and Disability Studies. As a piece of literature, Anatole allows one to answer affirmatively to Paul Longmore’s question. As a methodological frame, Disability Studies, beyond the interdiscursive method recommended by Mitchell and Snyder, may broaden the field of literary studies to the greater scope of history of representations.

Flora Amann holds a joint PhD from the Université of Montréal (Canada) and the Sorbonne University. She is an associate researcher at the Bibliothèque nationale de France.

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References:

Amann, Flora, Sourds et muets entre savoir et fiction au tournant des Lumières, Paris, Classiques Garnier, 2021 (in press).
Bézagu-Deluy, Maryse, L’abbé de l’Épée. Instituteur gratuit des sourds et muets 1712-1789, Paris, Seghers, 1990.
Chappey, Jean-Luc, La Société des Observateurs de l’Homme (1799-1804). Des anthropologues au temps de Bonaparte, Paris, Société des études robespierristes, 2002.
Gay, Sophie, Anatole, Paris, Firmin-Didot, 1815.
Louichon, Brigitte, Romancières sentimentales, 1789-1825, Saint-Denis, Presses universitaires de Vincennes, 2009.
Mitchell, David T. and Sharon L. Snyder, « Representation and Its Discontent: The Uneasy Home of Disability in Literature and Film », in Gary Albrecht, Katherine Seelman et Michael Bury (ed.), Handbook of Disability Studies, Thousand Oaks, CA and London, Sage Publications, 2001, p. 195-215.
Thomas, Jack, « Le sourd-muet de l’abbé de L’Épée : récits concurrentiels d’une affaire judiciaire au siècle des Lumières », in Lucien Faggion, Christophe Regina and Bernard Ribémont (ed.), La culture judiciaire. Discours, représentations et usages de la justice du Moyen Âge à nos jours, Dijon, Presses universitaires de Dijon, coll. « Histoires », 2014, p. 463-483.

Recommended citation:

Flora Amann (2021): Does literature ever give anything other than a negative image of disability? In: Public Disability History 6 (2021) 1.

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‘What is their Crime?’ Disability, Race and Eugenics in Britain’s Brexit Debate

By Emmeline Burdett

Disability and the Brexit Debate

One of the features of the debate about Brexit (Britain’s departure from the European Union) has been that Remainers (who should probably now be called Rejoiners) portray people who voted in favour of Brexit as being complicit in the resurgence of aggressive nationalism of which Brexit, along with such things as the presidencies of Viktor Orbán in Hungary and Donald Trump in the United States, is widely seen as forming a part. Rejoiners rightly show this resurgent nationalism as being dangerous not only in itself, but also because it represents an alarming return to the attitudes which facilitated the rise of fascism in the early twentieth century.  The subject of this blog post will be the way in which many Rejoiners assume that being historically-aware requires one to be extremely sensitive to issues of race, but very little else. One of the results of this is that disablist insults (insults which either imply that one’s opponent’s views are the result of being disabled, or which show that implying that one’s opponent is disabled, is socially acceptable in a way that criticising them by using a racial slur, would not be) are thrown around with impunity. One example of this is the attitude to eugenics, which is still widely deemed to be an acceptable suggestion unless it is used in a racist manner.

Eugenics, Low Intelligence and Criminality

The term ‘eugenics’ was coined in 1883 by Francis Galton, a British statistician and cousin of Charles Darwin. He aimed to apply Darwin’s theory of ‘the survival of the fittest’ to human beings, with the idea that this would have various results – namely that races and individuals who were less equipped to triumph in the struggle for existence would gradually die out. Eugenicists sought to encourage this trend by means of both positive eugenics (encouraging ‘desirable’ families to have more children) and negative eugenics (discouraging or actively preventing ‘undesirables’ from having any offspring at all).  It was inevitable that these ideas appealed to other countries too (particularly to those with empires and/or imperial ambitions), and the first international eugenics conference was held in London in 1912.

In the same year as the eugenics conference, the British periodical The Spectator published an article in favour of eugenics. In particular, the article argued that there was a strong link between low intelligence and criminality, and that the only way to break this link was through the use of eugenics:

"The only way of cutting off the constant stream of idiots and imbeciles and feeble-minded persons who help to fill our prisons and workhouses, reformatories, and asylums is to prevent those who are known to be mentally defective from producing offspring. Undoubtedly the best way of doing this is to place these defectives under control. Even if this were a hardship to the individual it would be necessary for the sake of protecting the race." (The Spectator, 25 May 1912, quoted in an article from the same magazine, April 2016.)

This article’s message was that the only way to reduce the crime rate and protect the rest of society was to contain the ‘feeble-minded’. In other words, people judged to be of low intelligence were being accused of a propensity to criminality in general. Similarly, during the Brexit debate, Rejoiners were accusing Brexiters of low intelligence, which was supposedly the reason for their support for Brexit, and also for extreme right-wing ideologies.  In the context of a discussion about a person who did not remember which way she had voted in the 2016 referendum, and who thought she had voted the same way as the man she was seeing at the time, a Rejoiner commented:

‘This is why universal suffrage is a bad idea, and eugenics is more and more like a good one. Our gene pool seems to have become disproportionately shallow’ (https://www.facebook.com/groups/theverybrexitproblemsclub/permalink/336438150614119 ).

In order to further reinforce the idea that Brexiters are stupid, and that this alleged stupidity manifests itself in such things as support for the extreme right, a member of The Very Brexit Problems Club shared a photograph which had originally been tweeted by the comedian Omid Djalili. The photograph showed two shaven-headed men with swastika tattoos, and at least one of the men was also wearing a Remembrance poppy lapel pin. The caption that Djalili used to accompany the photograph was ‘Swastiska (sic) and poppy has to be the best idiot we’ve seen in recent times’. The person who shared the photograph on Facebook captioned it ‘The best cognitive dissonance stupidity can buy’ (https://www.facebook.com/groups/theverybrexitproblemsclub/permalink/417878972470036).

 

 

This fixed idea, that Brexiters were not only stupid, but dangerously stupid, effectively prevented what could have been a serious and fruitful discussion about the state of education (and of politics and society) in Britain, as well as about the role of the British press in influencing opinion on important matters. Such a discussion might even have acknowledged the high levels of factionalism in British society, and have suggested ways of addressing this. It is extremely regrettable that this did not happen. In addition, the free use of terms like ‘idiot’, and approving references to eugenics, from people who pride themselves on their supposed historical awareness, creates the impression that implying that one’s opponent is stupid, is not only a victimless crime, but something completely divorced from history and society.

Eugenics and Race

This can be seen by contrasting the above comments with some made by Rejoiners when eugenics was discussed in connection to race. The British Prime Minister Boris Johnson’s advisor Andrew Sabisky had been forced to resign because of various controversial remarks he had made, including saying that black people were less intelligent than white people. One newspaper article was shared on the anti-Brexit Facebook page ‘The Very Brexit Problems Club’ with the comment ‘Mr Eugenics has gone! YES!’ (https://www.facebook.com/groups/theverybrexitproblemsclub/permalink/501347917456474). Reading through the rest of the discussion of this article, it is clear that though Sabinsky advocated eugenics on grounds other than race, (including intelligence), it was his views on race which were seen as unacceptable, particularly in the light of historical justifications for racism, which were themselves based on eugenics.

Though this post has focussed on the Brexit debate, it does point to a wider problem – namely, that it is often seen as quite acceptable to discredit opponents by implying that they are disabled, instead of trying to formulate a more appropriate argument. The persistence of the idea that there is no link between historical denigration of disability and the willingness to do the same thing today seems to suggest that there is an unacknowledged belief that disability prejudice either reflects reality, or simply does not matter. It has been convincingly argued that the post-WW2 insistence that the international eugenics movement of the early twentieth century was a mere historical aberration has helped to facilitate the idea that persecution on the grounds of, for example, race, or political belief, is much more serious than persecution on the grounds of disability, which is viewed as a medical matter, with the attendant suspicion that it must be justifiable (Knittel 2015: 19). This was certainly the message that came out of the Nuremberg Medical Trial of 1946-1947, a US Trial the purpose of which was the prosecution of the main perpetrators of Nazi ‘medical’ crimes. These crimes included the Nazi ‘euthanasia’ programme, during which an estimated 300,000 disabled and mentally ill people were murdered between 1939 and 1945. Despite the fact that the Nuremberg Medical Trial was supposed to prosecute the main perpetrators of this crime, the judges appeared to struggle with the idea that it had been a crime, for they announced in their judgement:

"Whether or not a state may validly enact legislation which imposes euthanasia upon certain classes of its citizens is a question which does not enter into the issues. Assuming that it may do so, the Family of Nations is not obligated to give recognition to such legislation when it manifestly gives legality to plain murder and torture of defenceless and powerless human beings of other nations." (FO 646: 11395)

I am not suggesting that the Brexit debate is anything like the Nazi ‘euthanasia’ programme, but what I am saying is that the idea that disability does not have to be taken as seriously as other aspects of identity has not gone away.

My thanks to Anne Klein and Pieter Verstraete for their help with this blog post, which has gone through many incarnations. 

Emmeline Burdett is an independent researcher, and is currently writing a book about the use of the 'Nazi 'euthanasia' programme in Anglo-US debates about euthanasia. She is also a writer and translator, and in 2018 she published the English translation of Verminkte Stilte (Mutilated Silence) Pieter Verstraete and Christine van Everbroeck's book about the experiences of Belgian soldiers disabled during the course of the First World War.

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 References:

Susanne Knittel, The Historical Uncanny: Disability, Ethnicity, and the Politics of Holocaust Memory (New York: Fordham University Press, 2015).

FO 646, Case 1 Medical  (U.S. v. Karl Brandt et al), vol. 23. 

 Recommended citation:

Emmeline Burdett (2020): ‘What is their Crime?’ Disability, Race and Eugenics in Britain’s Brexit Debate. In: Public Disability History 5 (2020) 3.

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Parental Advocacy and the Changing Attitudes Towards Down syndrome in Post-war Britain

By Sophie George

This article is based on a wider dissertation on ‘The Changing Attitudes Towards Down syndrome in Post War Britain’ written in 2019. It discusses the role of parental advocacy as a force for evolutionary change towards the inclusion of people with Down syndrome in post war Britain. I will therefore be focusing on the movements towards integrated education and the process of de-institutionalisation, as well as commenting on the introduction of the pre-natal test and its effects on the parental community.  At the start of the post war era, most children with Down syndrome were transferred to institutions and many were deemed ‘uneducable’. With the help of the parental movement, institutions were improved, community living was becoming a reality and education for people with intellectual disabilities like Down syndrome was more accessible and integrated. Whilst the parental movement helped change attitudes towards Down syndrome, it was not revolutionary and represents a piece within an evolutionary process that continues to this day.

This article includes some specific examples which, whilst they cannot be generalised do provide insight into the types of attitudes prevalent of the time.

The Growth of Parental Advocacy

The introduction of the pre-natal test, in some ways negatively affected attitudes towards Down syndrome, as it revealed an ‘anti-disability sentiment within society’ (Furedi 2016: 77). Parental attitudes towards Down syndrome in the 1970’s and 1980’s however were generally more positive than in the immediate post war decades. The introduction of the amniocentesis test which tested foetuses for conditions like Down syndrome and the legalisation of Abortion in 1967, meant that women who gave birth to babies with Down syndrome had generally chosen to. The increase in the conscious decision by mothers to keep a pre-diagnosed pregnancy was likely a cause for the increase in parental support groups in the 1980s. Support groups such as The National Association of Parents of Backward Children, now known as MENCAP, challenged the stigma attached to having a child with disabilities like Down syndrome. A report from Living with Handicap, a working party set up by the National Children’s Bureau in 1974, suggested that ‘Perhaps the greatest help we had …was to talk to other parents with a child with a handicap like ours’ (Dame Eileen Younghusband committee 1974). Therefore, choice meant those having children with Down syndrome were more likely to advocate for them, strengthening the community.

However, due to the fallibility of the test, some foetuses went undetected, thus some mothers gave birth to children with Down syndrome without knowing, or possibly wanting the child. For example, Mary Craig, a mother of a 12-year-old boy with Down syndrome stated, ‘I know all the horror, shame, disgust and fear that you feel initially at having given birth to an imperfect child’. However, she later argued ‘Nicky has given all the family so much’ (Grosvenor 1981). This could therefore suggest that the increase in the support groups and the availability of choice due to pre-natal testing, helped change the minds of those who previously may not have chosen to give birth to a disabled child.

Deinstitutionalization and Community Living

In the early post-war era, children with learning difficulties were often assigned to institutions or hospitals, mostly as a result of professional advice. Anne Crosby, who had a son with Down syndrome in the 1960’s, was unsure where the best place for her child was and so consulted a doctor. The doctor advised her to place him in an institution, heartbreakingly labelling him as ‘the throw away child’ (Sandino 2003).

Picture showing Matthew Crosby in the 1960s. Taken from – Charlotte Moore ‘The Throwaway Child’ The guardian (23/05/2009).

However, during the 1970s and 1980s, an initiative started by parents, which saw integration into the community as a possibility (Russell 1996: 80). As the post-war era progressed, parental charities began introducing projects to promote transition to community care. In 1958, the parent led charity The National Society for Mentally Handicapped Children carried out the Brooklands Experiment. This showed how effectively a child with intellectual disabilities in a home environment could develop compared to an institution and the results were published around the world. Although, some parents openly advocated for their children, some expressed advocacy more subtly, which was difficult to record. Eileen Clark, a mother of a child with learning disabilities, was a strong advocate for community living in the 1980’s. In a podcast for the Hidden Now Heard MENCAP project, she suggested, ‘The parents wouldn’t stand up for themselves’ (Hunt 2016). However, Clark also stated that her influence encouraged some parents to openly stand up against the authorities for the rights of their children. This highlights the power of parents in encouraging others to demand change, particularly in the introduction of community services. It does, however, suggest that by the 1980’s attitudes were not transformed and although many did, some parents still did not forthrightly advocate for their children.

One motivation for campaigns against institutional living and an improvement in services was the institutional scandals of the 1960’s and 1970’s. Maureen Oswin’s The Empty Hours: Weekend Life of Handicapped Children in Institutions published in 1973, exposed the unsuitable environment of institutions. It found that children in hospitals ‘are vulnerable to various forms of deprivation’ such as ‘intellectual deprivation, incompleteness and deep-seated unhappiness’ (Oswin 1973: 150). The Cardiff Ely hospital report, published in 1969, also questioned institutionalisation and inadequate services provided in institutions. The Ely Report found ‘cases of bad management, poor nurses and callousness’ (Wilkinson 1969). One such example was of a boy with Down syndrome who had his nails cut so short, ‘to an extent that must have been painful.’(The committee of Inquiry 1969) This can be used to demonstrate the types of negative attitudes towards Down syndrome in institutions in the 1960’s.  As a reaction, The Campaign for the Mentally Handicapped, which was predominantly led by parents, started a movement to improve services. This took the form of a petition of 12,000 signatures, which was sent to the government in 1974. As a result, the care at Ely hospital was radically improved and the scandal caused ‘the momentum to close the long-stay hospitals’ (Wales online 2012). These scandals therefore publicized poor conditions of institutions, encouraging parents and other individuals to demand improvement for care services and ultimately end the institutionalisation of people with intellectual disabilities.

A photograph showing a group of nurses and patients walking outside Ely. ‘outside of Ely Hospital’ The Peoples Collection- copyright Mona Hussey.

Photograph of a child at Ely Hospital in 1967 by Jurgen Schadeberg.

Education

In 1945, some children with Down syndrome were not given an education, as those who were ‘severely handicapped’ were considered uneducable under the 1944 Education Act. From 1950-1977, segregation was occurring, with 55,00 children in 1955 in special schools and 135,261 in 1977 (Cole 2012: 33 –34). Whilst this could indicate more children were receiving an education, the exclusion of children from mainstream education only enforced negative attitudes towards disability. Despite this, parental advocates fought for change in the post-war decades, with many parents rejecting the segregation of children into special schools and pushing for educational inclusion. The Plowden report of 1967 helped recognise the need for educational inclusion and highlighted the significance and importance of the parental movement for the desegregation of education in mainstream Britain (Maguire 2006: 73).

The Education Act of 1970 entitled all children the right to education, encouraging the introduction of the Warnock Committee of Enquiry, which reviewed special education (Barton 1997: 146). The Warnock report in 1978, recommended that the term ‘special educational needs’ be adopted and normalised disability by suggesting 20% of children had some level of learning disability (Warnock et al. 1978). The report suggested statements of disability should be introduced and local government should be obliged to make provisions based on these. The 1981 Education Act was to implement these recommendations. However, because the report did not make economic recommendations, the Act allocated almost no resources to special education, demonstrating the governments ‘evasiveness about integration’, because of economic cost (Warnock 1996: 55). Despite this, the 1981 Education Act encouraged educational integration to become a reality in the 1980’s (Select Committee on Education and Skills Third Report 2006). As a result, contemporary Brian Stratford argues more professionals were ‘aware of the potential of Down syndrome children’ (Stratford 1985: 149). Integration of disabled children in mainstream schools in the 1980’s caused a change of attitude, as society was becoming more exposed to disabilities and thus feelings of ‘otherness’ were dissolving. Ann Borsay supports this, suggesting educational integration ‘is the most effective way of challenging negative attitudes…. And developing a more tolerant and open society’ (Borsay 2012).

Parents were however often met with resistance by education professionals. For example, MP Clement Freud stated in 1980, that teachers frequently responded with, “We do not take Mongols at this school; the other parents would not like it", when asked to take a child with Down syndrome. Nevertheless, some educational professionals worked to support the parental movement. Teacher and advocate Stanley Segal, for example, was extremely influential in the strive towards integration, after writing his book  No Child is Uneducable  in 1967. This supported the need for integration and better education for children with disabilities, challenging the assumption that some children with disabilities were uneducable. Segal therefore aided the parental movement and helped reinforce the need for the education acts of the 1970s and 1980s.

Douglas Hunt was a retired headmaster and parent to Nigel who had Down syndrome. In 1967, Douglas encouraged his son Nigel to write his own book, entitled ‘The World of Nigel Hunt; the diaries of a Mongoloid youth’. This book helped reinforce the educational capabilities of people with Down syndrome. The preface of the book includes a note from researcher L.S Primrose, who comments on Nigel’s ability and suggests he will ‘go on learning notwithstanding his extra chromosome’ (Hunt 1967: 10). Whilst the contents of this book are not complex, it does represent a transition from parental advocacy to self- advocacy. Primrose supports this, suggesting the book allowed Hunt to ‘speak on behalf of thousands of similarly effected people’ (ibid.). This book therefore demonstrated the abilities of children with Down syndrome and reinforced the need to provide better education. However, it also represents the transition to self-advocacy, where parents encouraged their children to find and use their own voices.

Nigel with his parents- taken from Nigel Hunt (1967): The World of Nigel Hunt, the diary of a Mongoloid youth, New York.

Conclusions and the birth of self-advocacy

The change in attitudes towards Down syndrome in post war Britain was not revolutionary or linear. The parents that took part in the advocacy movement for educational and community integration, encouraged a progression in attitudes and dispelled the social assumptions of ‘otherness’, by pushing for their children to be in the mainstream. Additionally, whilst change was occurring throughout the post war period, the 1970s and 1980s represented a period a significant development for the integration of people with intellectual disabilities.

As we can witness with the case of Nigel Hunt, the parental movement encouraged the self-advocacy movement. This movement continues today and is still working to ensure all people with Down syndrome are recognised as valuable and capable members of society, worthy of our understanding, acceptance and inclusion.

Sophie George is a history graduate from Swansea university, who wrote her undergraduate dissertation on 'The Changing Attitudes Towards Down syndrome in Post War Britain'. She is passionate about advocating for people with disabilities and is seeking a career in the charity sector.

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References
Ann Furedi (2016): The Moral Case for Abortion, New York.
Dame Eileen Younghusband committee (1974): Living with Handicap, London. Quoted from Philippa Russell (1996): ‘Parents Voices: Developing New Approaches to Family Support and Community’, in Peter Mittler/Valerie Sinason (eds): Changing Policy and Practise for People with Learning Disabilities, London, pp. 73–85.
Peter Grosvenor (1981): ‘Handicap? It was a source of joy for us’, Daily express, 10 August 1981, UK Express Online, https://www.ukpressonline.co.uk/ukpressonline/database/search/preview.jsp?fileName=DExp_1981_08_10_006&sr=1, [Accessed: 05/03/2019].
Linda Sandino (2003): Ann Crosby interviewed by Linda Sandino about her son Matthew who was born in the 1960s with Down syndrome, 26 March 2003.
Paul Hunt (2016): Eileen Clark interviewed by Paul Hunt about advocacy for people with Learning Disabilities in Wales, 12 April 2016.
Maureen Oswin (1973): The Empty Hours: The Week-End Life of Handicapped Children: Weekend Life of Handicapped Children in Institutions, London.
James Wilkinson (1969): ‘The Cruel Hospital’, Daily Express, 28 March 1969, The UK Express Online, https://www.ukpressonline.co.uk/ukpressonline/view/pagview/DExp_1969_03_28_001, [Accessed: 20/04/2019].
The committee of Inquiry (1969): Chapter 3 Of Report On Ely Hospital Individual Complaints Of “Ill-Treatment”, https://www.sochealth.co.uk/national-health-service/democracy-involvement-and-accountability-in-health/complaints-regulation-and-enquries/report-of-the-committee-of-inquiry-into-allegations-of-ill-treatment-of-patients-and-other-irregularities-at-the-ely-hospital-cardiff-1969/chapter-3-of-report-on-ely-hospital/, [Accessed: 20/03/2019].
Wales online (2012): ‘Why the Ely inquiry changed healthcare forever’ (6/02/2012). https://www.walesonline.co.uk/news/health/ely-inquiry-changed-healthcare-forever-2041200
[Accessed: 02/06/2020]. 
Barbara Cole (2012): Mother-Teachers: Insights on Inclusion, Oxford.
Meg Maguire (2006): The Urban Primary School, London.
Len Barton (1997): The Politics of Special Educational Needs, in: Len Barton and Mike Oliver (eds): Disability studies: Past, Present and Future, Leeds, pp. 138–159.
Mary Warnock et. al. (1978): Educational Needs: Report of The Committee Of Enquiry Into The Education Of Handicapped Children And Young People, London.
Mary Warnock (1996): The Work of the Warnock Committee, in:  Peter Mittler/Valerie Sinason (eds): Changing Policy and Practise for People with Learning Disabilities, London, pp. 51–60.
Select Committee on Education and Skills Third Report (2006). https://publications.parliament.uk/pa/cm200506/cmselect/cmeduski/478/47805.html, [Accessed; 12/03/2019].
Brian Stratford (1985): Learning and Knowing: The Education of Down syndrome Children, in:  David lane/Brian Stratford (eds): Current Approaches to Down Syndrome, London, pp. 149–166.
Anne Borsay (2012): Disabled Children and Special Education, 1944–1981. A presentation delivered at the Department for Education.
Nigel Hunt (1967): The World of Nigel Hunt; the diary of a Mongoloid youth, New York.

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Recommended citation:
Sophie George (2020): Parental Advocacy and the Changing Attitudes Towards Down syndrome in Post-war Britain. In: Public Disability History 5 (2020) 2.

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“People with disabilities in the GDR” – perspectives on public history from an inclusive historical research project

By Isabell Paulick and Sebastian Balling

Disability Studies is a trans- and interdisciplinary branch of science, which emerged from the international disability movement of the 1960s and has been discussed in scientific contexts in Germany since 2001 (Köbsell, 2012; Waldschmidt, 2015). It is based on a social model of disability, according to which people are hampered by society, for example by barriers, attitudes, actions and laws. This can be understood as a criticism of the medical model according to which people are handicapped due to a "defect".  Disability Studies thus represent a human rights model of disability (Degener, 2015). The emancipatory slogan "Nothing about us without us" is at the center of Disability Studies and therefore emphasizes the active role instead of the passive role of people with disabilities in the research process.

Started in April 2002 with the founding of the nationwide working group "Disability Studies in Germany" (AGDS for short), this branch of science has been gaining in popularity in Germany since the beginning of the 21st century. In 2004, the International Research Center for Disability Studies (iDiS) was established at the University of Cologne, and in 2005 the Center for Disability Studies (Zedis) was established at the University of Hamburg. In addition, research and teaching in Disability Studies is now being conducted at various universities in Germany, Austria and Switzerland. The first professorship for "Sociology and Politics of Rehabilitation, Disability Studies" was created at the Faculty of Human Sciences of the University of Cologne at the end of 2008. Within the scope of these institutions, various research projects have been established and are investigating the topic of disability.

A current research project is the joint project Menschen mit Behinderungen in der DDR (People with Disabilities in the GDR), which is carried out since November 2018 in cooperation between Kiel University, Bundeswehr University Munich and the Drachensee Foundation in Kiel. The historical research project examines the life of people with disabilities in the GDR from different perspectives in four subprojects.

Subproject 1 (Families with disabilities in the GDR) focuses on the lives of families with children with disabilities. From an everyday perspective, the project tries to uncover the lived experiences of families with disabled children, e.g. in regards to the (gendered) distribution of tasks and roles within the families or their communication with state or ecclesiastical caregiving institutions. Embedded in the broader context of general political, social and cultural developments in the GDR, the project analyzes changes of family everyday-life throughout the span of life of the East-German state.

Subproject 2 (Techniques of mobility and built environment) investigates the technologies of transport and housing as well as planning and architecture as related aspects of inclusion and exclusion. It also reviews state plans and announcements for the social integration of disabled people in terms of their actual implementation in everyday life. Therefore, people from various social spheres of the former GDR are being interviewed in guideline-based interviews. These include city architects and manufacturers of aids, those involved in disability policy, and disabled people affected by the decisions of these groups.

Subproject 3 (Media representations of disability) tries to uncover the largely unknown discourses on disability in official GDR-media such as dailies and television as well as small media such as private films and Samizdat-prints. The project asks about the changes in representations of disability during the GDR’s lifespan, the political use of disability representations for state narratives and their usage by different political groups. Further research focusses on the producers of media about disability: who produced which media narratives on disability/disabilities? How big was the share of people with disabilities and their relatives and friends in the production of these representations?

Some of the sources included in the subprojects 1 to 3 will be integrated in a digital exhibition with didactically edited accompanying material in cooperation with the Drachensee Foundation in subproject 4 (Digital Exhibition/Production of Open Educational Resources). The close cooperation between the Drachensee Foundation and the Kiel Institute for Inclusive Education is a central point in the project implementation and in particular in the creation of the digital exhibition. The Institute for Inclusive Education develops and implements educational programs by and with people with disabilities. In a three-year full-time qualification, people with disabilities are trained to become educational specialists. As qualified educational specialists, they convey the worlds of life, needs and specific perspectives of people with disabilities. The team sensitizes (future) teachers, specialists and management staff on an equal footing.

Education specialists of the Institute for Inclusive Education during a seminar.

In order to ensure that people with disabilities have barrier-free access to the digital exhibition, the exhibition is being worked on closely with two educational specialists from the Institute for Inclusive Education. For them, this is the first research project they are actively involved in. This gives them the opportunity to actively incorporate their life experiences and expertise as directly affected people with disabilities into the research process. The educational specialists perceive this as an opportunity for a change of perspective. People with disabilities are not only perceived as research objects, but as active participants, which was not possible for a long time in this form. In particular, when creating the digital exhibition, they have the role of an expert in their own cause. The focus of this participative research should be on working at eye level with low hierarchies between project participants with and without disabilities. This is an important point to keep in mind throughout the research process.

Accessibility is an important issue in the context of the Internet as well as in the context of science communication. Accessible web offers can be used by all users regardless of their limitations or technical capabilities. Thus blind and visually impaired users can read out websites by software or have them printed in Braille. Deaf or hard-of-hearing people whose first language is sign language need tailor-made, special forms of presentation on the Internet. In addition to addressing the needs of people with disabilities, accessible means that in general, non-disability users will not face any barriers.

It is also very important that the scientific content is presented in a clear and easily understandable language without distorting the source material too much. Accessibility includes setting educational, training, and intellectual standards that are not excessive but adapted to the topic – this means that highly complex sources such as submission, TV-documentaries or need to be contextualized and commented in order to make them accessible to a larger audience. This context is particularly binding on public service web sites, in order to realize the demands for equal rights also of people linguistically handicapped in one country (mother tongue deviating from the majority), but also covers the problems of older people, which are not with the possibilities and methods modern communication and socially disadvantaged classes.

If asking the educational specialists of the Institute for Inclusive Education involved in the research project about their experiences in dealing with the Internet, they report some problems. For example, the use of complicated terminology or foreign words is a problem for the comprehensibility of the contents. It was also critically noted that when using audio-visual media, the tempo of videos, for example, often cannot be set. Too fast or too indistinctly spoken texts cause contents to be harder to understand. It would also be important to use audio descriptions to allow deaf people access to audio-visual content. Illustrated descriptions of complex content and the use of plain language are also helpful. The educational specialists also criticized the presentation of some webpages. For example, a too bright or dark color choice of the Internet pages leads to the fact that the font cannot be read well. Even too confusing presentation of the control elements or content is in the way of a good understanding of the Internet pages.

The close cooperation between the educational specialists as experts acting of their own cause and the scientific staff in the research project should ensure that these points are taken into account in the creation of the digital exhibition. Moreover, in other points concerning the research project, the expertise of the educational specialists will be included in order to meet the premises of Disability Studies.



Sebastian Balling is doctoral candidate at the History Didactics Department at the University of Kiel. Isabell Paulick is an educational research scientist at the Drachensee foundation in Kiel.

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References:

Degener, T. (2015). Die UN-Behindertenrechtskonvention - ein neues Verständnis von Behinderung. In T. Degener & E. Diehl (Hrsg.), Handbuch Behindertenrechtskonvention. Teilhabe als Menschenrecht - Inklusion als gesellschaftliche Aufgabe (S. 345–351). Bonn: Bundeszentrale für Politische Bildung.

Köbsell, S. (2012). Wegweiser Behindertenbewegung. Neues (Selbst-)Verständnis von Behinderung. Neu-Ulm: AG SPAK.

Waldschmidt, A. (2015). Disability Studies als interdisziplinäres Forschungsfeld. In T. Degener & E. Diehl (Hrsg.), Handbuch Behindertenrechtskonvention (S. 334–344). Bonn: Bundeszentrale für Politische Bildung.

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Recommended citation:
Isabell Paulick/Sebastian Balling (2020): “People with disabilities in the GDR” – perspectives on public history from an inclusive historical research project. In: Public Disability History 5 (2020) 1.

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