Reclaiming Our History? Creative Responses to the Nazi Persecution of Disabled People, Part II

by Emmeline Burdett¹

My previous post looked at the ways in which organisations and individuals within the British disability movement have used references to, and symbols connected with, the Nazi persecution of disabled people. I argued that early references were intended both to encourage a sense of common identity amongst disabled people, and to demonstrate that they were an oppressed minority. This latter interpretation was radically different from the traditional view of disabled people as suffering exclusively from their impairments. In this post, I am going to discuss Tanvir Bush’s forthcoming novel CULL, and Liz Crow’s 2008 documentary, exhibition, and art installation, Resistance. In their different ways, both of these engage creatively with the Nazi persecution of disabled people and ask what relevance this has today.

Although Bush’s novel Cull is not due to be published until January 2019, she has written an as-yet unpublished article in which she explains the novel’s themes and how the Nazi analogy is used in it. Similarly, Crow’s website contains a number of articles shedding light on various aspects of the creation of Resistance. As Bush explains,

"CULL is a dark, satirical novel that hypothetically asks what could happen if the UK government sanctioned state-sponsored euthanasia as a social cost-cutting exercise?"²

‘Grave and systemic violations of disabled people’s rights’.
Bush explains in an afterword that she was inspired by the publication, in November 2016, of a United Nations report which found that the UK government was responsible for ‘grave and systematic violations of the rights of disabled people in the UK’³. The majority of the violations cited involved the UK government’s cuts to disability benefits and its relentless drive to get disabled people into work and ensure that benefits were not a so-called ‘lifestyle choice’⁴. The UN reiterated its findings in 2017, and Theresia Degener, the head of the UN Committee on the Rights of Persons with Disabilities (CRPD) stated that the government’s ‘fitness to work’ tests ‘totally neglected the vulnerable situation people with disabilities find themselves in’⁵.

Liz Crow in her wheelchair dressed as a Nazi

Liz Crow’s Resistance was motivated in part by similar concerns:

"For disabled people, we find ourselves in the midst of a new system of benefits that has been charged with contributing to the deaths of thirty-two disabled people every week, a tabloid press campaign that is portraying disabled people as fraudsters and scroungers … an associated hardening of public attitudes towards disabled people, and a chilling rise in hate crime. Within these events are knife-edge judgments of our place in the world, a step away from whether we even deserve to exist at all."⁶

Despite these similarities, Crow and Bush take very different approaches to the question of the Nazi persecution of disabled people. Crow tackles it directly, whilst Bush alludes to it, and explores how cavalier dismissals of the value of life may come to develop, and then to become virtually unquestioned ‘facts’. Crow’s installation comprises two short films – one scripted by Crow herself, and telling the story of Elise Blick, a character inspired by an account given by Hugh Gregory Gallagher in By Trust Betrayed: Patients, Physicians, and the Licence to Kill in the Third Reich, his 1990 book about the Nazi ‘euthanasia’ programme.

Elise makes her bid for freedom © Roaring Girl Productions

Gallagher had mentioned a woman whom he referred to as ‘EB’, a patient at an institution in Nazi Germany, who was employed there as a cleaner. Gallagher wrote that ‘EB’ made a bid for escape, going around rather than inside the bus which had arrived to take her to her death.⁷ By the time of her posthumous arrival in Liz Crow’s Resistance, ‘EB’ had morphed into the pivotal character of Elise Blick. As Crow shows, the character’s surname was chosen quite deliberately: 

"EB became Elise Blick, her last name translated from the German for to look, to see. Elise does not speak and the staff assume she does not comprehend, but she watches as the buses filled with patients leave and return empty."⁸

The Importance of Names.

‘Resistance’ is a fictional film, but, being inspired by real events, it offers an interpretation which is radically different from that to be found in the overwhelming majority of history books about the Third Reich. In doing so, it further answers Paul van Trigt's question about whether the investigation of historical violence against disabled people can lead to the emancipation of disabled people.

Elise and her broom outside the institution © Roaring Girl Productions

Crow’s film does – taking its cue from Gallagher’s By Trust Betrayed, it brings the possibility of disabled resistance to a much wider audience, and – crucially – shows disabled people valuing their lives and wanting them to continue. Crow further took the decision to name all the disabled characters in Resistance, while leaving the institution staff anonymous – a further act of reclamation, showing that the people who were killed are more worthy of remembrance, than those who facilitated their murder.

Frontcover of Bush’s novel CULL

Names are also of importance in Tanvir Bush’s novel CULL. Bush includes various references to the Nazi ‘euthanasia’ programme and to the ideas and persons which helped to facilitate it. Two of her characters – a celebrated physician and his daughter, a rising politician – have the surname Binding. This is a reference to Karl Binding, who, with his colleague Alfred Hoche, wrote Die Freigabe der Vernichtung lebensunwerten Lebens (The Granting of Permission for the Destruction of Life Unworthy of Life), published in Leipzig in 1920. Bush describes this tract as ‘the blueprint for the Aktion T-4 Plan and the staunch defence of many of the doctors.’⁹ There is also an incidental character called Dr Julian Hallywooden, whose unusual surname came about because it refers to Julius Hallervorden, the German neuroscientist whose glittering research career was not impeded by his having participated in the Nazi ‘euthanasia’ programme.  Bush states that her aim in doing this was not to test her reader’s historical knowledge, but that "readers who made the connections might receive a jolt of pleasure, like finding a key clue to a crossword"¹⁰. 

The grey ‘murder-box’ bus © Roaring Girl Productions

Bush’s image of finding a key clue in a crossword is apposite, but I wonder if instead of receiving a jolt of pleasure, a reader might be motivated to think more deeply about why Bush had chosen to allude to persons instrumental in the Nazi ‘euthanasia’ programme. The decision was clearly taken to make a point. The same is true of the grey Community Transport ambulance which makes its first appearance at the beginning of the novel, and which Bush writes is "based on the very ones in Germany that had picked up the disabled children and adults for euthanasia … in the 1930s"¹¹.

That Bush’s novel is set in modern-day Britain, but alludes to the Nazi ‘euthanasia’ programme, is particularly striking, showing that there are things for every society – not just Germany – to consider. In fact, both Bush and Crow make this explicit. Bush’s novel shows how policies which make life avoidably harder for disabled people facilitate lack of understanding, foster the growth of stereotypes and hate crime, and allow a cavalier attitude towards the value of disabled lives. The novel also shows that these attitudes would be much harder to sustain without a complicit media, and of functionaries who either actively believe that people from targeted groups are merely representatives of types, or who simply do as they are told without question.¹²

Bush’s novel, then, advocates constant vigilance, and an awareness that seemingly small violations can often be part of something bigger. By contrast, Crow emphasises the need to create a society which is so strongly united that attempts to sow division are doomed to failure. The companion film to her ‘Resistance’ drama begins with two of the actors from the film discussing what visiting the death centres and portraying victims of the ‘euthanasia’ programme meant for them as disabled people. Then it moves on to

"A soundtrack of voices, disabled and not, talking about their experiences of discrimination … they speak of practical and emotional cost, but also describe the elation of being included. Audiences glimpse a starting-point for making that inclusion a reality and are shown the possibility of their own role in this."¹³

The differing approaches of these two works, and the different solutions they offer, makes the idea of seeing them as companion pieces, with each illuminating aspects of the other, attractive. They also demonstrate beyond doubt that the subject of the Nazi persecution of disabled people is one to which is still relevant, and also one to which disabled people are continuing to bring new and important insights.

Emmeline Burdett (emmelineburdett@gmail.com) is an independent researcher.

___________________

^{[1] I would like to thank Pieter Verstraete for his comments on a previous version of this post.
[2] Tanvir Naomi Bush, unpublished article explaining the genesis of CULL, 1.
[3] Ibid.
[4] Ibid.
[5] Quoted in ibid, 2.
[6] Liz Crow, ‘Resistance: The Art of Change’, www.roaring-girl.com/ wp-content/uploads/2014/05/Resistance-The-Art-of-Change.pdf , 4.
[7] Ibid.
[8] Ibid,14
[9] Bush, 5.
[10] Ibid, 7.
[11] Ibid, 8.
[12] Ibid, 4.
[13] Crow, ‘Resistance: The Art of Change’, www.roaring-girl.com/wp-content/uploads/2014/05/Resistance-The-Art-of-Change.pdf.}

Recommended Citation:
Emmeline Burdett (2018): Reclaiming Our History? Creative Responses to the Nazi Persecution of Disabled People, Part II. In: Public Disability History 3 (2018) 15.

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Reclaiming our History? The British Disability Movement and the Nazi ‘Euthanasia’ Programme, Part I

by Emmeline Burdett¹

In a PDH blog post earlier this year, the Dutch historian Paul van Trigt asked whether the investigation of historical violence against people with disabilities can ever serve the emancipation of people with disabilities? I believe that it can, and to illustrate this, I am going to look at the various ways in which the disability rights movement in the United Kingdom has dealt with Nazi attitudes towards, and treatment of, disabled people, and the questions which this continues to pose for contemporary Western societies. As this is a rather large topic, I am going to address it in two blog posts. In this first post, I am going to discuss the various instances of images connected with this being used to cement a sense of group identity amongst disabled people. In my subsequent post, I will be looking more closely at the programme’s wider implications, and discuss how members of the British disability rights movement have engaged with these. I hope that my two posts will provide a comprehensive answer to van Trigt’s question.

The Search for Identity
Early UK texts on the subject of what would become Disability Studies did not include references to Nazi attitudes towards disabled people. An example of this is the 1966 book Stigma: The Experience of Disability, edited by Paul Hunt. The book showed disability as the collective experience of oppression, rather than as the individual experience of bodily deficit, and it contains two references to Nazism, but neither of these is connected to the Nazi ‘euthanasia’ programme, suggesting that at this stage it had not entered into disabled people’s collective consciousness – at least not in the United Kingdom.

The British writer Allan Sutherland dedicated his 1981 book Disabled We Stand to ‘the 100,000 or more people with disabilities murdered by the Third Reich’.² As this dedication is unreferenced, and as the book contains no further information about the programme, it seems likely that his purpose in referring to it was to use it to cement a sense of group identity amongst disabled people. This impression is increased by a talk which Sutherland gave at the University of Durham the following year. During this talk, he explained how he had assumed that his experience of impairment was purely personal:

I myself was diagnosed epileptic at the age of four. Yet it was not until I was in my early twenties that I met anybody else whom I knew to have epilepsy. For twenty years my disability was something I lived with on my own, with no knowledge of other people’s experience of that disability … My epilepsy was part of my identity, but a purely personal part … That is one of the things that has in the past kept disabled people from starting to develop a shared radical consciousness: unlike most oppressed groups … we do not have a cultural identity of our own.³

Allan Sutherland’s comment is an important one, because it links Disabled We Stand to both the concerns expressed in earlier disability studies texts, and also with the reasons why the Social Model of Disability – which has become the cornerstone of the British disability movement – was developed. I also argue that it explains Sutherland’s decision to refer to the Nazi ‘euthanasia’ programme – if it could be shown that disabled people had been subjected to a programme of systematic state murder, the traditional view that they were suffering from their impairments with (almost by definition) no societal problems in sight, became increasingly untenable.

The Black Triangle
To this end, the Social Model of Disability (formulated in 1976) distinguishes between Impairment, which it defined as

Lacking all or part of a limb, or having a defective limb, organ or mechanism of the body;

and Disability, which is

The disadvantage or restriction of activity caused by a contemporary social organisation which takes little or no account of people who have physical impairments and thus excludes them from the mainstream of social activities.⁴

UK Disability History Month (UKDHM) also refers to Nazi attitudes towards disabled people in order to increase feelings of group cohesion and legitimacy. As shown in the illustration, the UKDHM logo is a black triangle with a yellow circle in the middle. Inside this circle, ‘UK DISABILITY HISTORY MONTH’ is written in black letters. The logo also bears the tagline ‘CELEBRATING OUR LIVES – CHALLENGING DISABLISM – ACHIEVING EQUALITY’.

Logo of UK disability history month

The website tells us about the choice of logo. Beside a black-and-white photograph of five obviously disabled men wearing striped concentration camp uniforms, each with an inverted black triangle sewn onto them, the UKDHM website states:

Disabled people were forced to wear this symbol by the Nazis during the T4 Eugenics Programme which was intended to eliminate them. Between 250,000 – 1,000,000 were murdered by the Nazis’ false hopes of building a master race. The UKDHM Logo has taken this symbol, and in reclaiming our history we have inverted it.

Though this statement raises questions - for example, it makes it appear that the black triangle was specifically associated with disabled people in the same way that the yellow star was specifically associated with Jews, when in fact this is not entirely true⁵ – it is an important development. The juxtaposition of the inverted Nazi symbol and the confident tagline asserting disabled people’s right to live and be part of society are very striking, as is the assertion that the decision to invert the triangle is an act of reclamation, in the same way that gay rights activists have reclaimed the word ‘queer’. The reference to ‘our history’ makes it clear that disabled people are seen as a specific group, with a specific identity and history.

The Black Triangle Campaign in Defence of Disability Rights was founded as a response to the death of the Scottish writer Paul Reekie in July 2010. Reekie took his own life at the age of 48 after receiving a letter informing him that his disability benefits were to be stopped. Reekie’s death was not an isolated incident, but just one of many resulting from the current Conservative government’s overhaul of the benefits system. As will be discussed more fully in the next post, the Campaign uses the Nazi symbol because it wishes to draw specific parallels between the Nazis’ use of the symbol to denote people considered ‘Workshy’, and the current Conservative government and right-wing press’s characterisation of benefit claimants as ‘scroungers’. Thus, although Black Triangle and UKDHM have very similar logos, they use them for strikingly different reasons.

Black triangle campaign’s logo

As shown in the illustration, the Black Triangle Campaign’s logo, like that of UKDHM, makes use of the Nazi symbol of the black triangle – this time, the triangle appears with its point facing downwards, on a circular background of what is clearly intended to be a striped concentration camp uniform. According to Black Triangle’s website, this decision was taken because

The Nazis forced people with mental and other disabilities to wear black triangles in the extermination camps during the Holocaust. 

As in the case of the UKDHM logo, the Black Triangle Campaign makes it appear that the black triangle was specifically associated with disabled people, and makes similar claims regarding the symbol’s reclamation. As shown in the illustration, the Campaign’s tagline reads ‘DISABLED PEOPLE FIGHTING FOR OUR FUTURE – CUSTODIANS OF OUR PAST’, and, significantly, the ‘OUR’ of ‘OUR PAST’ is in red, whereas the rest of the sentence is in black. In a similar way to the inversion of the black triangle on the UK Disability History Month logo, this emphasis on ‘OUR’ history may be regarded as an act of reclamation.

This was the first part of Burdett’s response to Paul Van trigt’s earlier post. The second part of her reaction will follow soon.

Dr Emmeline Burdett (emmelineburdett@gmail.com) is an independent researcher.

___________________

^{[1] I would like to thank Pieter Verstraete for his comments on a previous version of this post.
[2] Allan Sutherland, Disabled We Stand (London: Souvenir Press (Educational and Academic) Ltd., 1981, no page number).
[3] Allan Sutherland, ‘Coming Out Disabled’, talk given at the Approaches to Disability conference held at the University of Durham, Friday, 8 March 1982.
[4] UPIAS, Fundamental Principles of Disability, quoted in Cameron, (ed.) Disability Studies: A Student’s Guide (London: Sage, 2014, 137).
[5] The black triangle was used by the Nazis to denote concentration camp inmates considered Asocial and ‘Arbeitsscheu’ (‘workshy’). Thus, though this category included disabled and mentally ill concentration camp prisoners, it was not specifically associated with them.}

Recommended Citation:
Emmeline Burdett (2018): Reclaiming our History? The British Disability Movement and the Nazi ‘Euthanasia’ Programme, Part I. In: Public Disability History 3 (2018) 14.

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Understanding Disability through a Group of Prosthesis Users in China

By Chunchun Wang

Mr. Lin¹, a retired teacher in his seventies, has been a left above-knee prosthesis user since 2016. He underwent amputation surgery after accidentally cutting the artery in his left thigh when carpentering in 2015. Living with his prosthesis changed the everyday life of Mr. Lin and his family, daily interactions with others included. It was an upsetting experience for Mrs. Lin to speak about her husband’s encounter with some neighbors after him being disabled:

“After his surgery, we did not go out regularly. We only told a few trustworthy people about his situation. Others guessed that something terrible must have happened to him, but they were not sure what it was. Gradually the story spread, so more and more people knew he was disabled and using a prosthesis. One day, after enjoying the winter sunshine in our neighborhood, we passed a few acquaintances on our way home. To my shock, those people with whom we had interacted for years, they turned their faces to the other side with eyebrows raised and mouths contorted (as if they had noticed something unpleasant and chosen to ignore it).”

Mrs. Lin imitated the neighbors’ facial expressions to me, then went on narrating: “They did not greet us, not even a word. I will never forget those faces. You cannot imagine how ugly they were. Why did they do that to us? We have lived in the same building for years.” She pointed to Mr. Lin with slight anger and deep disappointment and said: “I don’t understand why this person considers those people’s reactions are acceptable. I can’t take it.” Mr. Lin, sitting beside her, responded with a weak smile: “I am canfei (殘廢). It’s a fact. What can I do?”

Mr. Lin is one informant of mine during my 13-month fieldwork in the Sichuan 81 Rehabilitation Center in Chengdu, China. Drawing on narratives from my informants and my own observations, I aim to illuminate conceptions about disability, aesthetics of bodies, and care-giving/care-receiving practices in China through prosthesis users’ everyday experiences. Perceptions about disabled people are hugely influenced by cultural, social, and political factors, which bring low self-esteem and moral dilemmas to disabled people in China. My informants’ experiences always made me curious about another question – how do they deal with disabilities in their lives given the prejudice about disabled people? Most informants attribute their disabilities to supernatural beings, with fate being a common explanation. All holds true for Mr. Lin.

Mr. Lin, walking to his room in the Sichuan 81 Rehabilitation Center. ©Chunchun Wang

Why is Mr. Lin canfei?

What is canfei? What is the relation between canfei and the official terms canji (殘疾) in China? The word canfei is composed of two Chinese characters, can (殘) and fei (廢). In the popular character reference book Shuo Wen Jie Zi (說文解字), literally “Explaining Graphs and Analyzing Characters”, can is interpreted as “injury and wound"². The original meaning of fei is “collapsed houses”, and its meaning developed into “falling”³. Ji is explained as “disease” and “leaning on something due to diseases”⁴. Terms for disabled people changed in specific eras, but they always carry the meanings of fei and ji. In today’s interpretations, canfei implies disabled people’s lives are not worthy of living as fei’s main meanings include “useless”, “finished”, and “damaged without any chance of recovery.” Canji hints at that disabled people are pathological and unhealthy so that they need further treatments.

Compared to the original definitions, which are merely descriptions of particular states, the contemporary interpretations obviously carry strong and negative moral meanings. Matthew Kohrman, an anthropologist researching disability in China, reviewed the history of terms for disabled people in the 20th century and its relations with nation-building. He points out that canfei used to be a category which differentiated between the elite and the weak; in Mao’s period, canfei was regarded as a misery caused by people who are against the nation; after initiating the Reform and Opening-up Policy, disabled people started to become one of the representative groups showing that Chinese people have a responsible government, which takes care of everyone.⁵ In the last 15 years of the 20th century, canfei was gradually removed from the official discourse and replaced by canji, which was promoted by The China Disabled Persons Federation (CDPF).

The CDPF was established in March 1988⁶ mainly due to Deng Pufang’s⁷ influences. The organization had strong connections with the government and it became a branch of the local authorities, especially in counties and towns. The CDPF rapidly grew into an influential parental organization speaking for and of disabled people in China. Changing the term for disabled people is one of the first steps CDPF took to improve disabled people’s lives. By promoting the change from canfei to canji, CDPF emphasizes the importance of evidence-based care for disabled people, such as developing rehabilitation medicine, providing basic assisting facilities, and improving disabled peoples’ social status. However, canji links disabled people to ji (diseases); at the same time, its connotation is that disabled people might be treated or cured by medicine or medical technology. Canji might encourage the medical gaze on the disabled body rather than dismantling cultural and social stigmas.

People waiting outside a county-level CDPF office for their prostheses in November 2017 ©Chunchun Wang

Why does Mr. Lin describe himself as canfei while understanding the negative moral meanings of the term? It could be a form of self-mockery. More significantly, it is a reflection of the neighbors’ attitudes towards himself rather than him considering himself as canfei. As a teacher, Mr. Lin was respected in his community, but now he is a person that others intentionally ignore, as if his disability lies not only in his body but also in his morality. That is, he is judged not only because of his body but also due to the degenerated morality represented by a disabled body. Mr. Lin’s experience illustrates that there is still a gap between ordinary people’s understandings of disabled persons and the values expressed in written policies. I even doubt that the change, from canfei to canji, deeply touches upon people’s perceptions about disabled people and disabled people’s self-perception, as the influences of fei and ji are still profound. Furthermore, it might create a dilemma in disabled people’s life: they may be taken care of by the government while being looked down upon in everyday life.

Another reason for Mr. Lin to call himself canfei is that doing so frees him from having to play a passive role in Mrs. Lin’s narrative. Mrs. Lin accused Mr. Lin of not properly responding to the neighbors’ contemptuous behavior. By saying “I am canfei”, Mr. Lin showed his acceptance/ignoring of others’ unfair judgments and thus rejected Mrs. Lin’s accusation. To the Lins, other people’s prejudice become part of their life and something they have to deal with every day.

Fate – One Accountability for Disability

Mr. Lin told me his story while participating in an occupational therapy program: “My sister’s 60th birthday was a few months before my accident. I went to her place to celebrate with her. She is a fortune-teller. Before I left her house, she warned: ‘Brother, be careful in the upcoming months (this year). You will be lucky if you don’t die but you will pay heavily for being alive. Even if you don’t die, a layer of skin will be ripped off your body.’ I felt furious due to the misfortune she foresaw and responded: ‘Bullshit!’ After my amputation surgery, my sister asked me at the hospital: ‘Brother, do you still think I was bullshitting?’ There was nothing could I say.” Mrs. Lin elaborated: “The accident happened on the day before the National Day (Oct. 1, 2015). He was too stubborn to listen to any advice on that day. He insisted on making a peg-top which spins when being hit with a whip. Playing peg-top was a popular leisure activity at that time in our city. I suggested we clean the house and prepare food for our children and grandchildren as they would visit us during the seven-day National Holiday. However, he rejected my suggestions and focused on working around the house. Finally, he cut the vessel in his left thigh with the saw in his hands. He would not have been disabled if it was not for the holidays as most doctors were on leave. It was his fate.” “I never believed in that (fate) before what happened to me.” Mr. Lin added with an awkward smile.

Similar to explanations about misfortune in a wide range of cultures⁸, the Lins attribute Mr. Lin’s disability to the fate, which answers “why disabled” rather than “how disabled.” Accidentally cutting himself when carpentering is the direct reason, which does not explain why the accident happened to Mr. Lin at that particular moment; while fate is the fundamental and convincing explanation as it means that being disabled is Mr. Lin’s destiny, and the accident is a way to fulfill this destiny. Fate helps Mr. Lin to accept his disability. In Chinese culture, fate is changeable if people can detect the omens in advance. There would have been the possibility of a different life, which places prosthesis users in a dilemma of acceptance and regret. People cannot help asking the question of “what if”. What if Mr. Lin had listened to his sister’s warning and carefully avoided activities involving sharp tools during the rest of 2015? What if Mr. Lin had given up his plans and done chores with Mrs. Lin instead on Sep. 30, 2015? What if and what if…? Mr. Lin accepted his disability with its associated moral burdens. Prosthesis users such as Mr. Lin try hard to make sense of their disabilities in the complex contexts of China shaped by history, politics, and beliefs. I have to say that the journey for them is not pleasant at all.


<sup>Chunchun Wang is an anthropology PhD student at the Chinese University of Hong Kong.

[1] I use pseudonyms for all informants to protect their privacy.
[2] Xu Shen., Tang Kejing. Shuo Wen Jie Zi Jin Shi. 1st ed. (Changsha: Yuelu Shushe, 1997), 556.
[3] Xu Shen., Tang Kejing. Shuo Wen Jie Zi Jin Shi. 1st ed. (Changsha: Yuelu Shushe, 1997), 1274.
[4] Xu Shen., Tang Kejing. Shuo Wen Jie Zi Jin Shi. 1st ed. (Changsha: Yuelu Shushe, 1997), 1015.
[5] Kohrman, Matthew. Bodies of Difference: Experiences of Disability and Institutional Advocacy in the Making of Modern China, (Berkley: University of California Press, 2004), 57-82.
[6] “Overview of China Disabled Persons’ Federation,” China Disabled Persons’ Federation, accessed 0ct. 3, 2018, http://www.cdpf.org.cn/english/About/overview_1793/.
[7] Deng Pufang (鄧朴方) is the first son of Deng Xiaoping. He became disabled during the Cultural Revolution and then became an activist for disabled people in China. For more information: https://www.google.com.hk/search?q=deng+pufang&rlz=1C5CHFA_enHK726HK727&oq=Deng+Pu&aqs=chrome.0.35i39j69i57j0l4.7881j1j7&sourceid=chrome&ie=UTF-8.
[8] There are plenty of discussions regarding misfortune in anthropology, beginning with E. E. Evans-Pritchard’s book Witchcraft, Oracles, and Magic Among the Azande (1937).



_____________________________
Recommended Citation:
Wang Chunchun (2018): Understanding Disability through a Group of Prosthesis Users in China. In: Public Disability History 3 (2018) 13.</sup>
 

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People of short stature as representatives of the gods?

By Bert Gevaert, PhD

Seneb and his wife Senetites (ca. 2520 BC)
(Egyptian Museum, Cairo)

People of (unusually) short stature¹ are extremely popular in art: portrayal of people with so called ‘proportionate’ or ‘disproportionate’ short stature (usually achondroplasia) can be found all over the world and through the entire history of mankind. People of short stature were popular in ancient Roman and Greek art, but also in Asian, African and Latin American cultures. Fascinated by the tiny appearance of their fellow human beings, artists from Classical Antiquity till today liked to sculpt, cast, draw, paint, photograph or film people of short stature. Do these persons remind them (and us!) of ancient mythology about people of short stature living in faraway places? Do they attract us by their doll-like features? Are they funny, simply because they are smaller than ‘normal’ people? Some people consider them as more than funny, in their opinion they are ridiculous and for them they are a popular target to laugh with.

Without any doubt the Italian painter Faustino Bocchi (1652-1752) was one of history’s artists who was obsessed by people of short stature. Nevertheless, he is less famous than Diego Velázquez (1599-1660) who also made several beautiful paintings of the same subject (e.g. Las Meninas, 1653). Faustino Bocchi, who lived in Brescia, was specialized in painting people of short stature in ridiculous poses and situations. These paintings caused great amusement amongst his clients and made Bocchi a wealthy person. His tour de force, which was actually a shameless imitation of the works of Giuseppe Arcimboldo (1526/7-1593), is without any doubt the portrait of a human face, consisting of grotesque ‘pygmies’.

Faustino Bocchi, A Head formed out of Pygmies (1729)
(Christie’s Images/Corbis)

Today, looking at this painting, we can nod our head and condemn this painting of Bocchi, naming it ‘disrespectful’ towards a minority group, which is certainly a right attitude. On the other hand, Bocchi’s depiction of little people is only an exaggerated version of all other depictions of people with short stature in art around the world and throughout history. Almost always these people are portrayed with an emphasis on their tiny stature: they are shown with furniture, their protectors or benefactors (adult men and women or even children), various kinds of animals (parrots, dogs, monkeys,…) which make the contrast between big (normal?) and small even bigger. The animals on paintings with people of short stature seem to suggest that they were seen as nothing else than another kind of pet, meant to amuse their masters. 

To my knowledge, there are almost no paintings or sculptures of people of short stature in a normal environment, where their size doesn’t matter. Almost always they are represented in art as utterly little, incredibly cute, unbelievably ugly, mysteriously strange or hilariously ridiculous. It seems like they don’t have no other function than to please and divert other people. Do they have a life outside of the painting? Do they have a wife? Do they have kids? Are they more than just people who are smaller than ‘normal’ people? 

In that respect, the sculpture of Seneb and his wife Senetites, made by an unknown Egyptian artist around 2520 BC, is a unique depiction of a person of short stature. Seneb is portrayed in a very respectful manner, with his wife and children. Seneb is seated on the same height as his wife and because he crosses his legs while sitting, it can’t be seen, at first sight, that he is smaller than his wife. In this way, both are on ‘the same level’: they are equal in height and this might suggest a harmonious marriage as well. She is a beautiful woman and puts her arm around her husband in a  very tender and loving way. The danger that the harmony – on the level of art and life -  between this Egyptian man and his wife could be disturbed by the little legs of the husband, is avoided in a very intelligent way. The artist has replaced Seneb’s legs by two of the children of the couple, a boy and a girl. Seneb’s children serve as the legs of their father, but they are also the symbol of a successful marriage.

Seneb was a proud man, enjoying a happy life as a father, but also as a personal friend of the pharaoh. In the tomb of Seneb (near Cairo) about twenty of his royal titles can be found: friend of the Pharaoh, overseer of the dwarfs, overseer of the royal ships, overseer of the animal tenders, keeper of the seal of the gods,… Besides that Seneb and his wife were both important priests.

Why did Seneb obtain this prestigious position and why – as a consequence – was he depicted in the most respectful matter a person of short stature has ever been in history? Ancient Egyptians were very kind towards mentally and physically challenged people, but amongst them, people of short stature were the most respected. In ancient Egypt, at least two gods were venerated who had small stature: Bes and Ptah Pataikos. Bes was the god who protected women against evil, especially when they delivered babies. Ptah Pataikos, on the other side, was connected to Ptah, who was god of craftsmen and architects. Thus, both were very important gods.

Bes (3th-1st century BC)
(Carlsberg Glyptotek, Copenhagen)

Ptah-Pataikos (Late Period, 712-332 BC)
(Carslberg Glytotek, Copenhagen)

In their appearance, Bes and Ptah-Pataikos show typical characteristics of what is medically phrased as ‘achondroplasia’, the most common form of short stature. People of short stature, who are said to have achondroplasia, usually have a torso with ‘normal’ size, disproportionate small limbs with slightly curved legs and a large (fore)head. All these characteristics are prominently depicted in Ptah-Pataikos and Bes.

People of short stature reminded the ancient Egyptians about the scarab or Sacred scarab (scarabaeus sacer), a species of dung beetle which has a normal sized torso and tiny, disproportionate and curved limbs. This insect makes small balls of dung which he rolls out or towards his hiding place. This movement of rolling a ball out of a hiding place, reminded the ancient Egyptians about the movement of the rolling ball of the sun. In the eyes of the ancient Egyptians, people of short stature were not suffering from a physical challenge, but they were representatives of the gods here on earth. In this way, they deserved the highest respect!

Bert Gevaert obtained a PhD on the representations of disabilities in the epigrams of the Roman author Marcus Valerius Martialis (40-104 AD) (Free University of Brussels, 2013).

^[1] For this text I preferred to use the term ‘people of short stature’ instead of other (combinations of) words, e.g. ‘little people’, ‘short people’, ‘small people’ or worse… ‘dwarf’. Though dwarfism refers to the medical condition of being unusually smaller than average (https://www.lpaonline.org/faq-) and some people of short stature have no problems with the word ‘dwarf’, the term ‘people (or person) of short stature’ is less biased and less insulting.^↩

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Recommended Citation:
Bert Gevaert (2018): People of short stature as representatives of the gods?. In: Public Disability History 3 (2018) 12.

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“Just like everyone else”: Studying constructions of ‘normality’ through attitudes towards conjoined twins

By Helena Franzén, Uppsala University

In 1996, the American conjoined twins Abigail and Brittany Hensel went on the Oprah Show and spoke about their daily lives and their wish to impress upon the viewers how they both were quite ordinary people. Documentaries followed and they got their own reality show at TLC. In the show, the audience could follow their everyday life; at home, in school, and when doing extracurricular activities such as taking their respective driver’s licences. The viewers were also allowed to access the twins’ hopes, dreams, and plans for the future. Abigail and Brittany portrayed themselves as having two quite different personalities and expectations on life, and went on air to counter preconceptions about conjoined twins. By showing the public how normal they actually were, they wanted to demystify the condition. They were two young girls who wanted to raise awareness and be treated as the regular persons they were. The Youtube clip below shows one of the first documentaries about the twins. The strongest message is that Abigail and Brittany indeed are just the same ‘as everyone else’, a few physicians flash by. Even though they themselves stress that they respect the wishes of the twins and their family to not conduct more advanced medical investigations than regular check-ups, the strong curiosity still shines through.

YouTube video titled "Abigail & Brittany Hensel - The Twins Who Share a Body"

Conjoined twins have been a topic of interest in medicine for many centuries. Physicians have for example debated whether these bodies were the vessels of one or two souls, as well as pondered why and when this condition happens during pregnancy. In my research, I examine the social processes of collecting bodies for medical science in nineteenth-century Sweden. More specifically, I am interested in why and how the bodies of embryos and fetuses, of which many were conjoined twins, were obtained, transformed into scientific objects, and put on a shelf in a medical collection. An aspect of this is the social construction of ‘normality’ and ‘pathology’, as well as who set the boundaries. How were conjoined twins understood in the Swedish society at the time? To contrast definitions set by the medical community, media representations is a way to start unpacking notions about how people with this kind of body were regarded by society and how they understood themselves. This is important when attempting an analysis of the dynamics of collecting practices.

Throughout the second half of the 19th century, there were short reports in the Stockholm-based daily newspaper Dagens Nyheter of ‘siamese twins’ born in other parts of the country and several adverts about touring so called ‘freak shows’, especially international ones. Among these were short reports about Chang and Eng Bunker, the original ‘siamese twins’. They were born 1811 in Siam, today’s Thailand, and after years of touring the world as a sideshow attraction, they settled in the USA. The Bunkers became famous both at home and on the European continent. They both married, had children and became homeowners and farmers, spending alternating nights in their respective homes. Chang and Eng themselves cultivated their individuality, marking their difference through property and social relations. They travelled the world and performed in front of an audience, putting themselves on display as a mean to earn an income. This was their way of making a living, by directing the audience’s gaze towards their extraordinary bodies. Yet their private lives were aligned with expectations on contemporary well-off middle-aged men. The fact that each had a family and a household to provide, leading such ordinary lives became part of the narrative of wonder.[1]

A black-and-white studio portrait of Chang and Eng Bunker, two middle-aged men with stern faces, joined at the abdomen, wearing suits.
Public Domain, https://commons.wikimedia.org/w/index.php?curid=2330999

This raises questions about the construction and borders of normality, what does it mean to have a normal life? In the cases of the Bunker- and Hensel twins, normality is imagined as a way to participate in society and thus performed accordingly. Attention is centred at, yet drawn away from the shape of their bodies and instead directed onto what kind of activities they can do and which kinds of lives they can lead. In my research, I encounter only fragments of information about Swedish conjoined twins outside the medical sphere, most often filtered through the accounts of medical practitioners. Since my point of departure is anatomical collections as a mean to trace practices and attitudes, it is specimen jars on display in museums and used for research which dominates my field of view. They are produced in the context of medicine and mediates a specific narrative of what normal and deviant bodies are. I aim to look beyond these images and to include the agency of positions outside medicine in order to gain a more nuanced analysis.

One of the problems I face in trying to understand the shaping and negotiation of normality in my period and place of time is that it is very difficult to locate sources containing the voices of conjoined twins themselves, or the ones of their families. The easiest voices to find are the ones of scientists and medical practitioners, and I am worried that I will slip into the trap of reproducing only the narrative presented by them. Thus, framing the collected bodies as raw material for research and reproduce exoticism, as well as cement ideas about what constitutes ‘a normal body’. This struggle resonates with the one faced by Rana Hogarth, who in a previous blog post wrote about the issues of researching the history of slavery and how to tackle the asymmetry of records. What did it mean to give birth to conjoined twins, what were the consequences if they died, or survived, and which were the implications for the negotiation between the parents of deceased conjoined twins and the medical practitioners who wanted to collected the bodies for scientific purposes? These are questions I am hoping to be able to address and I consider disability research to be a powerful tool to steer the gaze away from the stories told by medical men, who had their own specific agendas, and instead ask what the lived experiences of conjoined twins themselves and those of their families were.

Since there is a scarcity of records of this, one way around is to look at how conjoined twins were portrayed in the media at the time (the Bunker-twins being the most famous example), as a way to raise new research questions which might direct me to source materials I’ve previously not thought of and a mean to reconfigure the framework. Another way is to aim for self-reflexivity and challenge my own subconscious preconceptions by watching stories told by conjoined twins in my own time, such as the Hensel-twins. There is a lot of power of in the choice of perspective and thus it is vital to shift back and forth between more than one during the research process, as well as being transparent in what kinds of choices we as historians make when writing history.

Helena Franzén is a PhD student within the project Medicine at the borders of life: Foetal research and the emergence of Ethical Controversy in Sweden, funded by the Swedish Research Council Dnr 446– 2014–1749. See http://medicalborders.se.

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Recommended Citation:
Helena Franzén (2018): “Just like everyone else”: Studying constructions of ‘normality’ through attitudes towards conjoined twins. In: Public Disability History 3 (2018) 11.

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Eating Dirt, Treating Slaves

By Rana Hogarth

Historians of slavery must often contend with how the power imbalances of the slave system continue to shape the archival record, and, more importantly, influence the types of stories that get told. I certainly found this to be the case when writing my first book, Medicalizing Blackness: Making Racial Difference in the Atlantic World, 1780-1840 (University of North Carolina Press 2017). I felt overwhelmed as I weighed the written correspondence, published medical treatises, military records, and plantation records, medical lectures etc. by white physicians, military officers, colonial elites, and slave owners, against the dearth of written sources left behind by enslaved and free black people. Thus, it was a great challenge to construct a narrative using sources whose faithfulness in accounting for black people’s experiences in sickness and health were tenuous to say the least.

Given the realities of the archives related to slavery, my approach to research became informed by working with the asymmetries in my evidentiary sources rather than against them. Part of what I hoped to achieve with my book then, was to not only show how blackness formed a corpus of knowledge that white physicians used to cultivate their medical authority and professional expertise, but also to show how enslaved people shaped this often contradictory and protean process. I tried to amplify the experiences of enslaved people as recipients of white medical treatment and as objects of white medical gazes, rather than “speak” for them. I reminded myself as I wrote the book that the doctor-(subjugated) patient relationship was a two-way street—one in which the balance of power was in flux. Physicians had to read patients’ bodies for clues and inquire about symptoms; slaves could dissemble, lie, or even be forthcoming when they described their symptoms. Physicians could also ignore slaves’ symptoms if they did not fit their expectations of how a slave’s body should respond in times of sickness, and, in some cases, physicians simply failed to understand the meaning of their patients’ symptoms.  Bearing all of this in mind, I thought about why white physicians presented the information about black people’s bodies in the way that they did. What was at stake for these physicians? And how did a physicians’ pronouncement that enslaved person was diseased help create a new identity for that slave in the plantation economy and community?

Heads circa 1836 Richard Bridgens

I applied this line of questioning in my book’s chapters on Cachexia Africana—a little known slave disease that only affected black people. It was typically attended by dirt eating and a gradual wasting away of the body. Cachexia Africana was a creation of the collective white imagination; it was a pathology only found in black people, hence the name Cachexia Africana or “African wasting.” Doctors no longer use the label nowadays, but it appeared in medical texts during the era of slavery. Dirt eating, however, could apply to anyone of any race, and has been known as pica or geophagy. Generally speaking, Cachexia Africana often appears as a footnote or a brief reference in many scholarly works on slave health.  Some scholars have pointed out that Cachexia Africana was just one of many socially constructed slave diseases. Others have used this disease as means to highlight the nutritional deficiencies that plagued enslaved black people’s bodies.

In Medicalizing Blackness, I used Cachexia Africana to illuminate how enslaved people challenged white physicians’ authority.  Moreover, I also used the disease to show how white conceptions of what was normal versus pathological in black people’s bodies was deeply contingent on context and largely socially constructed. Throughout this process I used the very discourses that white physicians had generated about the alleged physiological deficiencies in black people—the very sources that seemed to replicate the power of slavery in the archive.  I took the approach of scrutinizing what it was that white physicians said (or didn’t say) about Cachexia Africana and its victims in medical texts. For example, many physicians complained about treating slaves who fell victim to Cachexia Africana more so than other common diseases they encountered. Most physicians who wrote about Cachexia Africana did so in treatises or dissertations dedicated to “negro diseases” or plantation medicine, and they lost no time boasting of their medical skill (many of the physicians who wrote about the prevalence of this disease on Jamaican plantations studied at renowned medical schools such as the University of Edinburgh). When these physicians failed to treat Cachexia Africana, why did they spend so much time complaining about it—thereby drawing attention to their professional shortcomings? What did their failures say about the limitations of white medical knowledge and education in the disease environments of the Caribbean? For physicians that blamed enslaved spiritual healers for bringing on the disease or exacerbating it, was this a way for them to excuse their inabilities to affect cures? (Physicians did not mince words when it came to complaining about enslaved practitioners!) Enslaved practitioners likely enjoyed more trust and respect within the enslaved communities in which they practiced than white physicians. Bearing this in mind might explain why white physicians felt that they were being undermined as they tried to treat Cachexia Africana. Indeed, European physicians who practiced in slave societies acknowledged that enslaved healers simply had more effective treatments than what Western medicine could offer—a topic expertly examined by Londa Schiebinger’s Secret Cures of Slaves: People, Plants, and Medicine in the Eighteenth-Century Atlantic World. We can perhaps surmise then, that white physicians who attempted to treat Cachexia Africana were irritated by competition from enslaved healers and hemmed in by ineffective treatments.

Finally, textual descriptions of the symptoms of Cachexia Africana made legible the ways white physicians imposed concepts of normalcy or pathology on enslaved people’s bodies—a practice that might perhaps be familiar to scholars interested in disability studies.  Cachexia Africana curtailed slaves’ ability to labor, and slaves that were unable to labor were viewed as suffering from some kind of pathology (hardly ever overwork). In a sense, Cachexia Africana, served the purpose of reinforcing narratives that equated a slave’s ability to labor with normalcy. Here I would add, that due to the extreme deprivation and exposure to unsanitary conditions that slaves endured on the Middle Passage, and the plantation, the bodily fitness which slave owners and overseers desired in slaves appears to be more aspirational than real. Similarly, we might consider what other definitions of fitness that have appeared across time worked as social constructs to satisfy idealized rather than real ideas about health. Re-examining how concepts of pathological versus normal traits emerged through writings about diseases generate new questions to ask of our archive and historical actors regardless of area of interest. In sum, recovering the experiences of marginalized groups often involves interrogating what they did or did not do in the face of oppressive medical authorities; noticing how and why their very bodies could create such contempt for those who wrote about them.


Rana Hogarth is assistant professor of history at the University of Illinois, Urbana-Champaign. 

Recommended Citation:
Rana Hogarth (2018): Eating Dirt, Treating Slaves. In: Public Disability History 3 (2018) 10.

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Blinde und Kunst celebrates its 25th anniversary

By Siegfried Saerberg

I. Darkness as the womb of “Blinde und Kunst e.V.” (BuK)¹

In the year 2018 the association “Blinde und Kunst” [BuK] - blind people and the arts - celebrates its 25th anniversary. BuK was founded in 1993 in Cologne as a nonprofit organization of blind, visually impaired and sighted artists, as well as blind or visually impaired people who are interested in the arts.

Audio:
Leslie Ann Hewitt sings “Lilac Wine”, recorded 2013 in Cologne

© Blinde & Kunst.

BuK includes musicians, composers, writers, actors, sculptors and those who are just interested in culturally [de]constructing/presenting blindness in a new way. Its rise coincided with and inspired the beginning of the “darkness-movement” in Germany. By this term I mean activities such as “dialogue in the dark” and several dark restaurants and cafés presented and organized by blind people.² Thus, guiding sighted people into the dark in order to get on equal terms with them was our initial aim.

We developed a dark show which we called “Black Out” including music, dance, theatre-play, literature, stand-up comedy and magic.

Audio:
Niko Valentino presents his dark magic show, recorded 1996 in Hamburg
© Blinde & Kunst.

[Description: You hear music from a violin and a guitar. Then Niko exclaims: “Good evening, I am the magician with the pony tail. I have dressed up for you – but I am not sure whether you have already realized this.”]

The dark show also contained everyday activities such as finding one’s seat, finding the washroom and the exit, ordering a drink and paying in an entirely dark social situation. In 1993 for the first time “Black Out” celebrated blindness together with sighted guests and blind and sighted artists in a little theatre in Hamburg called “foolsgarden”. By 2007, “Black out” had been hosted at more than 100 events all over Germany, Belgium and Austria.

II. Producing radio programs and exploring blind culture

In 1995, BuK started to produce an acoustic magazine first on cassette and then on CD that was only distributed among its members. It contained more than 30 samples with around 35 copies which were sent via mail to each member. Between 1997 and 2000, we worked together with a broadcasting company in the south-west part of Germany [SWR] with the idea of presenting radio plays in darkness. A radio play called “Café Finsternis” resulted from this project.

Audio:

Tommy Ahrens and his guide dog Kelly singing the blues, recorded 1997 in Freiburg.

© Blinde & Kunst.

[Description: Tommy talks to his dog Kelly, then he plays the harp, Kelly sings.]

In 2004, we started to produce radio programs on our own and we still do this today in a local radio station in Cologne called “Freier Bürgerfunk”. From 2010 to 2012, together with “Radiofabrik” in Salzburg [Austria] we took part in a European culture program called “Ohrenblicke” [Ear Glances] to develop our technical and journalistic skills. Such radio programs are intended to present elements of blind culture to a wider public.

III. BuK explores blind arts

Our next goal was to develop special expressions of art that could be appreciated in the dark in order to make it more accessible for blind and visually disabled people. Between 1995 and 1997, BuK conceptualized three exhibitions in total darkness in Bergisch-Gladbach, Hamburg and Cologne, together with local associations of artists and the local association of blind and visually impaired people. The exhibition was called “Sinnenfinsternis” [eclipse of the senses] which is a play on words of the German phrase “Sonnenfinsternis” [eclipse of the sun] – with a forthcoming cosmic event on 11th August 1999. Acoustic, tactual, olfactory and gustatory exhibits – and also ostensibly visual ones such as a colour-cabinet for the haptic sensation of colour – were presented in total darkness to a mostly sighted audience.

In 2010, BuK developed the exhibition “Blinde Flecken” [Blind Spots]. The exhibition featured 17 favourite places of blind or visually impaired narrators. Voices, sounds and other audible sources were tape recorded to create an auditory portrait. Visitors could listen to these voices and sounds in dark booths via headphones. These recorded sounds were also presented on CD. 

Audio:

“3541 Miles” by Robbie Sandberg, published 2011.
© Blinde & Kunst.

[Description: You can hear a lot of different sounds. Then the author asks, what it is that drives a blind backpacker away from home. He answers that it is just the same thing that leads all backpackers into the world: To discover new things experience other people and different cultures and the lust for adventure. “Every city, every region has its own impact on the senses”, he says. Now you can hear several sounds of public travel like London Underground, San Francisco Cable Cars or Hamburg S-Bahn. Then you can hear a soundscape from India. The author concludes: “To experience with my own ears a sound that you normally only hear by watching an animal film tells me how far I am away from home”.]

In 2013, we transferred our concepts from dark environments to a lighted context now focusing on art exclusively produced by blind or visually impaired artists. Every work of art could be touched, was audio-described and a guiding system led through the exhibition.

Photo:

“Tapestry I”. Fire screen, cutlery, gardening tools, 2012 by Marian Edwards for the exhibition “Art Blind” (17.5.2013 – 17.6.2013) im Stapelhaus, Cologne.

Photo: Victor Dahmen, © Blinde & Kunst 2013
[Description: The object is a Victorian fire screen, an article of daily use which is placed in front of an open fireplace to prevent sparks from flying into the room. Fixed to its surface are carelessly discarded gardening tools and rusty, tarnished, dented, and bent cutlery. The objects are arranged in a very symmetric pattern both next to and on top of each other. We find scissors, fish knives, a small rake, and a little shovel. Tea and tablespoons of different sizes are placed in a row. With two exceptions, their handles point upwards and their inner surfaces face us.
Those are items which remain behind when a house is emptied out or when the attic is cleaned. They are the remains which remind us of a bygone life.
The artist writes, "I am fascinated by the way the light falls onto these objects and how the colours of the tarnished silver and discarded metal change. How we deal with objects and how we combine losses and memories that way."]

These exhibitions attempt to conceptionalize art and exhibitions beyond the limitations of the eye. They are also examples of the ways in which art exhibitions, from their initial conception, can be designed to accommodate the cognitive and perceptual culture of blind and visually impaired people. And moreover, they also represent a new and different experience for sighted people as well: the beheld object is not necessarily a visual one. It might also be an acoustic, tactual or gustatory one. So beauty does not only lie in the eye of the beholder. It also lies in the cognitive, perceptive and habitual procedures of the beholder’s body and mind.

IV. Conquering the citadels of art

From 2015 to 2017, we worked together with four major museums in Germany in a project called “Pilot Inklusion”. Together with Bundeskunsthalle in Bonn we worked on three exhibitions: “Japans Liebe zum Impressionismus” discussing the relationship between European impressionism and traditional art in Japan; “Pina Bausch und das Tanztheater” exploring the work of this extraordinary German choreographer from a bodily perspective, and “Wetterbericht”, dealing with the very subjective experience of weather as well as with global climatic changes. Besides implementing many tools to make the exhibitions accessible we presented works of art created by people with disabilities as a part of the exhibition.

Photo:
“Wolken, Textile, 2017 by Michael Gerdsmann, Die Schlumper (Hamburg) for the exhibition "Wetterbericht. Über Klimakultur und Klimawissenschaft" (7.10.2017 - 4.3.2018) in Kunst- und Ausstellungshalle der Bundesrepublik Deutschland, Bonn.

Photo: David Ertl © Kunst- und Ausstellungshalle der Bundesrepublik Deutschland, Bonn

[Description: You can see a woman touching some crocheted clouds hanging in the air. The clouds are in different sizes and made out of wool. They vary in colour between white and black. Behind the woman you see her guide dog laying on the exhibition floor.]

Photo:
“Welle im Auslauf” by Karla Faßbender for the exhibition "Wetterbericht. Über Klimakultur und Klimawissenschaft" (7.10.2017 - 4.3.2018) in Kunst- und Ausstellungshalle der Bundesrepublik Deutschland, Bonn.

Photo: © Blinde & Kunst.

[Description: You can see a wave made out of alabaster. It is rather a smooth and soft wave than a big one. It feels like you lay your hand on the watery surface of the Northern Sea on a very calm morning.]

We also worked together with “KUNSTHAUS KAT18” in Cologne where many artists with learning disabilities produce their works. Widening our scope from blindness to disability in general, the project dealt with three major topics concerning the relationship between culture, arts and disability:

• Accessibility: All arts must be made accessible to disabled people. Not a single kind of art may be excluded. This needs to be done in a process of transformation.
• Multisensory [Tactile, acoustic and audio-descriptive] elements must be implemented
• The permission to touch original sculptures
• The availability of copies that are as close to the original in form, material and size
• Multi-cognitive strategies [simple language, diverse languages] must be applied
• Special guide services and guide systems should be available
• Professionalization so that disabled co-workers will be hired in museum-contexts as volunteer work may not be the appropriate basis
• Inclusion: The process of transformation should involve the communication of at least three groups: people with disabilities who should be the subject of transformation, the museum experts who know about the objects and their cultural context, and disabled artists who are best-equipped to encapsulate this process of transformation. This communication must be instituted within local, regional and national organisations: Every museum, every centre of arts should create a council to work together with groups and organizations within the disability community where this process of transformation can take place.
• Participation: art and culture in a broader social context should be embedded into the work of disabled artists. The artistic and cultural expression of disabled people should be encouraged, promoted and supported. And because these belong to human heritage, it must be made accessible for the whole of society in museums and galleries.

Accessibility, inclusion and participation should not be added to exhibitions in a second or third remove, but seen as an inclusive making of culture in general. Disability approaches should be embedded already in the first steps of conceptualisation. This also means, that exhibitions should represent disabled people, their arts and their culture. This is, because it is society which makes people disabled. So it is also society which can enable us again. Furthermore, society is also obliged to do so, because society is the overriding factor which enables or disables all human beings in the first place. We are social beings with our own unique culture which yearns to be represented among other cultures in public places such as museums, theatres and galleries. And we as members, producers and recipients of disability culture and disability arts should in the future be able to make our presence felt in mainstream culture and the arts.


Website:
www.blindeundkunst.de

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^[1] I like to thank Leslie Ann Hewitt and Luke Hewitt for supporting the translation from German to English. Thanks also go to Eckhard Seltmann.^↩
[2] Siegfried Saerberg [2007]: The dining in the dark phenomenon. In: Disability Studies Quarterly, vol 27 no 3, summer 2007. http://dsq-sds.org/article/view/24/24^↩

Recommended Citation:
Siegfried Saerberg (2018): Blinde und Kunst celebrates its 25th anniversary. In: Public Disability History 3 (2018) 9.

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