5/09/2017

Futures of able-bodiedness: The dance performance THIS THING I AM

By Martin Nachbar, choreographer
Translated by Ylva Söderfeldt

On December 7, 2016 my team (consisting of dancers Lisa Densem, Sunniva Vikor Egenes, and Benni Pohlig, the lighting designer Bruno Pocheron, costume designer Marion Montel, and the producer Susanne Beyer) and I celebrated the premiere of a dance performance that approaches the subject matter ‘cyborgs’. “This thing I am” is my latest production and will be performed again in a modified version on June 17 and 18 in the Sophiensaelen in Berlin. Because our budget didn’t allow us to actually work on the interface between bodies and technology, I instead focused on two aspects that are technological and fantastic even though they don’t involve proper cyborg technology:

First, we worked with the fact that we as humans have always used different techniques in order to be in the world and survive day by day. Through practice and repetition, numerous of these so-called body techniques are stored within our bodies, allowing us to relate to our environments. One of the most ancient, most pervasive, and therefore perhaps least conscious body techniques is walking. Most of us learn it as infants, through imitation and months of trial-and-error. Walking is a useful example not least because it readily refers to the wide range of possibilities of modifying a body techniques by external means: shoes, crutches, prostheses, wheelchairs – extensions like these also extend the concept and perception of walking as a body technique.

This leads to the second aspect of our work with “This Thing I am”. One of the core features of dance is that it experiments with human body techniques and in doing so enhances and extends the awareness of the body and its surroundings. To a great extent, these processes have an open end. They do not strive towards greater efficiency in order to get ahead in the evolutionary struggle for survival, but explore the leeway offered in action and perception. 

Photo: Dieter Hartwig
This, in turn, means that the imaginary always matters in dance. How does our perception open itself up to a still unknown future? This is the question that our contemporary technologies pose to us, to our changing bodies and our existence in a changing world. This is science fiction, not as u- or dys-topia, but as a sensitive and open play with what is yet to come.

Based on these considerations, we focused on three methods when rehearsing the piece: First, the work with the connective tissue within the bodies of the three dancers. This tissue type has gained increasing attention through the recent popularity of therapeutic and diagnostic methods such as osteopathy and certain types of manual therapy. The connective tissue rests underneath the skin, envelopes muscular fibres, in shape of tendons connect bone with muscle, keeps organs in their places, and thus forms a network throughout the entire body. If we were to extract everything but the connective tissue, we would still be able to recognize the shape of our body, inside and out. Furthermore, the fascia tissue harbors most of our proprioceptors, the sensory receptors that detect the position of our body parts in relation to each other and our position in space. These receptors are found adjoining most acupuncture spots of Eastern medicine, and they react positively to the insertion and slight twist of the needle by which the tissue is minimally wrought. The fascia also reacts to manual touch. During rehearsals, two of the dancers often attempted to put the third dancer’s fascia into motion as a way to make them aware of it.

Photo: Dieter Hartwig
In an increasingly dynamic process, this turned into trio improvisations, and finally choreographies that evoke the feeling and image of three bodies connected in an invisible network. In rehearsals, the dancers spoke of future surgical procedures without cuts and scars, and of the sense of an inner and outer network connecting what’s inside the body with what’s surrounding it. We did not necessarily invent new movements or body techniques. Rather, and that was most important to me, we sharpened the way in which we perceive bodies and the way that they already are connected without technological enhancement. This is the foundation of almost all movement in the piece.

The second method was fictional storytelling. I asked the dancers to imagine an event in their lives that made them into cyborgs. Each of their stories refers to physical alterations that make the contemporary body an extraordinary body in a different time. The result was versions of science fiction that reflected the individual knowledge, wishes, hopes and fears of each dancer. The mental figure was the word “once”, which directs us both into the past and the future. Benjamin Pohlig, for example, relates how he hacked the memory hard- and software of big insurance companies in order to regain control over his own recollection, but then kept getting further and further lost in the Memory Cloud. 

Photo: Dieter Hartwig
Sunniva Vikor Egenes tells us about how she lost her job as a musical performer after cyborgs literally stole the show with their enhanced features. She then goes on to learn new body techniques, which unexpectedly give her a wonderful singing voice.

Photo: Dieter Hartwig
And, finally, Lisa Densem fantasizes about having her consciousness overwhelmed by the injection of a micro-machine that operates on neuronal levels and infiltrates the chemistry of the brain. The micro-machines allow for new connections in the brain and for enhanced abilities to verbalize experience. The process leaves her in a state of constant immersion in the experience, full of complexity and detail but without a sense of time or a way to verbalize it. In the end, she says, “There are things I cannot communicate. There are things I know which you would not be able to think. I have seen things. Sometimes I try to ignore this knowledge. I like to play myself as I used to be, but then I am overcome by guilt and a sense of responsibility. That is why we are here.”

Photo: Dieter Hartwig
This kind of limbo is not the purpose of current efforts within cyborg- and AI-technology. Quite contrary, the involved companies and military organizations want to gain as much financial and strategic advantages as possible for the neoliberal and martial struggle for survival. This is their prerogative. But let’s remind ourselves what dance can make us aware of, and what the cultural theorist Karin Harrasser has repeatedly pointed out: body experiments are always open-ended, since we can never predict with any certainty what technological body enhancement will make possible, and what a body will do with its enhancements.

That we humans, and now I return to the issue of walking, use our hands the way we do results according to some anthropologists from the fact that the bipedal walk freed the hands for other tasks. Evolutionary biologists also see a connection between speech and upright walking, as gravity pulled the larynx down in our throat, making room for the complex oral anatomy needed for speaking. Had the early hominids been confronted with the vast possibilities of their voices and hands, they would probably not have dared to make those first steps.

This leads me to the final method from the rehearsal process. In mime corporel, which is a physical acting technique and not intended for dance, the so-called “point fixe” is an important component. It consists of fixating a hand in space as if it were holding on to a pole or supported by a wall, and then letting the body move around this fixed point, without moving the hand. In mime corporel this serves to create the illusion of an object. 

Photo: Dieter Hartwig
We also worked with “point fixe”, but not to create imaginary objects, but in order to explore and question how hands are connected to bodies. There is already discussion around whether children should still learn to write by hand, when they in the future will surely be writing on keyboards, if at all. So, what will hands be good for in the future? Maybe they will remain only as relics of an earlier design, only to facilitate the transfer from the manual to the next era, when we’ll use them only for gesture and, as the Deaf already do, for language.

What this is going to be like we can only surmise. I imagine it will be exciting to program an app using gesture, and to also use the app by this means. Instead of crouching over the smartphones in our hands, using our thumbs to navigate, we’d see the data with inner eyes, and operate it with gesture. We will see wild and connected choreographies in the streets, every step, each gesture could be directed towards an app, or a passer-by. Every pedestrian would become a dancer and thus a kind of researcher that experiments with the possibilities of their body within an open network with other experimenting bodies.

Photo: Dieter Hartwig
See the entire performance here: https://vimeo.com/198805877
Martin Nachbar is a choreographer based in Berlin.

Recommended Citation:
Martin Nachbar (2017): Futures of able-bodiedness: The dance performance THIS THING I AM. In: Public Disability History 2 (2017) 8.

4/26/2017

Does Public Disability History Need a Cultural Model of Disability?

by Anne Waldschmidt, University of Cologne

Until today, efforts to develop a cultural model of disability have been rare. However, in parallel with the development of the social model and its critical discussion and partly independent of it, during the past decades we have witnessed an increase in cultural studies with regard to disability. We can already identify cultural disability studies as an innovative and prolific research field carried out in the humanities (see for example Waldschmidt et al. 2017). Yet, it is striking that in contrast to the social model of disability, which is often accused of dogmatism, the field of cultural disability studies still looks more like a patchwork quilt. The latter has not yet found to unique contours, despite an ongoing discussion on the implications of culture for disability constructions.

The National Gallery architecture and Alison Lapper sculpture at Trafalgar Square, London, UK. Ph: CGP Grey
As early as 1994, Tom Shakespeare called for a stronger perception of cultural representations of disabled people. Inspired by feminist debates and discussing different theories, he suggested "that disabled people are 'objectified' by cultural representations" (287), under which he subsumed theatre, literature, paintings, films and the media. In the following years, prominent scholars in the Anglo-Saxon world such as Lennard J. Davis, Rosemarie Garland-Thomson, Robert McRuer, David T. Mitchell and Sharon L. Snyder, Margrit Shildrick, Tobin Siebers, Shelley Tremain and others, published a great variety of cultural and literary analyses showing the wealth and productivity of treating "disability as a cultural trope" (Garland-Thomson 2002: 2). In 2006, Snyder and Mitchell explicitly introduced a "cultural model of disability," but they defined it narrowly as an approach that was primarily associated with US-American Disability Studies. In introducing the phrase "cultural locations of disability," referring to "sites of violence, restriction, confinement, and absence of liberty for people with disabilities" (Snyder and Mitchell 2006: x), they offered a tool for interdisciplinary works on disability within and beyond cultural studies.

Additionally, some scholars have argued for the usefulness of a cultural model of disability to study intersections between migration, ethnicity, 'race' and disability. In 2005 Patrick J. Devlieger, who teaches cultural anthropology in Leuven (Belgium), pleaded, following Foucault, Derrida and Marx, and focussing on communication and cultural diversity, for a dialectical cultural model (see also Devlieger et al. 2016). Recent works in postcolonial studies ask the question "of how disability is figured in the global, postcolonial history of the modern" and aim "to highlight specific located examples of disability in cultural contexts" (Barker and Murray 2003: 65). Meanwhile, the cultural model of disability has also been acknowledged in religious studies as a 'key term.' In this context, Nyasha Junior and Jeremy Schipper (2013: 35) define it as an approach that analyses "how a culture's representations and discussions of disability (and nondisability or able-bodiedness) help to articulate a range of values, ideals, or expectations that are important to that culture's organization and identity." Disability History, however, has not yet witnessed the development of a cultural model of disability that takes into account the intersections of culture, history and society, although there are attempts that aim at conceptualising this field of research with respect to cultural studies (see Bösl et al. 2010; Barsch et al. 2013).

Generally speaking, we can state that there is an ongoing reflection on the strengths of a cultural approach to disability. At the same time, however, the respective 'model' still seems to have rather blurred features. Further, the debate tends to reproduce the dominance of English speaking disability studies and overlooks contributions from other countries, such as the longstanding works of French philosopher Henri-Jacques Stiker. With regard to Germany, both the interdisciplinary book series "Disability Studies," published since 2007 by Transcript, and the Edinburgh German Yearbook's fourth volume on disability in German literature, film, and theatre from 2010 show a great wealth of works drawing on a cultural studies approach. The editors of the yearbook, Eleoma Joshua and Michael Schillmeier (2010), define the cultural model as "the analysis of the representations of disabled people in the cultural spaces of art, media, and literature" (5) and even speak of a "cultural turn" in disability studies (4).

It is beyond the scope of this essay to discuss these different proposals extensively. Instead, I want to sketch my own approach. Based on contributions published in 2005 and 2012, the latter together with Werner Schneider, I develop a cultural model of disability for the purpose of providing a joint framework for the already numerously existing contributions that analyse disability with the help of methodologies and approaches originating from cultural studies (see also Waldschmidt 2017). My intention is not to suggest that a cultural model should replace the social model of disability. Rather, critical disability studies, including disability history, should acknowledge that disability is both socially and culturally constructed.

What is the core of a cultural model of disability? My main point is that such a cultural model needs to reflect first of all its own understanding of culture. As both a social practice and an analytical category, culture does not only imply cultural activities in the narrow sense, be it so-called high culture or popular culture. Instead, for innovative research it is much more productive to apply a broad conception of culture that denotes the totality of 'things' created and employed by a particular people or a society at a given time in history, be they material or immaterial: objects and instruments, institutions and organisations, ideas and knowledge, symbols and values, meanings and interpretations, narratives and histories, traditions, rituals and customs, social behaviour, attitudes and identities. In this sense the public sphere, be it the public opinion, the public interest, public awareness or any other form of 'res publica,' is ultimately part of the culture of a given society. Hence, if we are going public, for example, in the streets or via social media, we are 'doing culture' in some way or other.In my opinion, if we were to use such a general understanding of culture, a cultural model of disability would not be dismissed as focalising only symbols and meanings, but could broaden our analytical perspective to investigate the relations between symbolic (knowledge) systems, categorization and institutionalisation processes, material artefacts, practices and 'ways of doing things,' and their consequences for persons with and without disabilities, their social positions, relations and ways of subjectivation. Thus, such a cultural disability model differs from other approaches in important aspects: It considers disability neither – as in the individualistic-reductionist model of disability – only as an individual fate nor – as in the social model – as merely an effect of discrimination and exclusion. Rather, this model questions the other side of the coin, the commonly unchallenged 'normality,' and investigates how practices of (de-)normalization result in the social category we have come to call 'disability.' The cultural model of disability implies a fundamental change of the epistemological perspective, since it does not deal with the margin but rather with the 'centre' of society. Against this background, 'doing public disability history' means not only to confront the wider public with disabled persons' perspectives, but to inspire critical self-reflections of those who consider themselves 'non-disabled' and to stimulate a public debate about what it means to be 'normal.'

Recommended Citation:
Anne Waldschmidt (2017): Does Public Disability History Need a Cultural Model of Disability?. In: Public Disability History 2 (2017) 7.


References
Barker, Clare and Stuart Murray. "Disabling Postcolonialism: Global Disability Cultures and Democratic Criticism." The Disability Studies Reader. Ed. Lennard J. Davis. New York, Milton Park: Routledge, 2013 (4th ed.). 61-73.
Barsch, Sebastian, Anne Klein and Peter Verstraete (eds.) The Imperfect Historian: Disability Histories in Europe. Frankfurt am Main: Peter Lang, 2013.
Bösl, Elsbeth, Anne Klein and Anne Waldschmidt (eds.). Disability History: Konstruktionen von Behinderung in der Geschichte. Eine Einführung. Bielefeld: transcript, 2010.
Devlieger, Patrick J. "Generating a Cultural Model of Disability." Paper presented at the 19th Congress of the European Federation of Associations of Teachers of the Deaf (FEAPDA), October 14-16, 2005. Accessed 02 June 2011 under: <http://feapda.org/Geneva%20Files/culturalmodelofdisability.pdf>.
Devlieger, Patrick, Beatriz Miranda-Galarza, Steven E. Brown and Megan Strickfaden (eds.). Rethinking Disability. World Perspectives in Culture and Society. Antwerp-Appeldorn: Garant, 2016.
Ellis, Katie. Disability and Popular Culture: Focusing Passion, Creating Community and Expressing Defiance. Farnham: Ashgate, 2015.
Garland-Thomson, Rosemarie. "Integrating Disability, Transforming Feminist Theory." Feminist Disability Studies. NWSA Journal 14.3 (2002). 1-32. Accessed 25 Feb. 2013 under: <http://www.jstor.org/stable/4316922>.
Joshua, Eleoma and Michael Schillmeier. "Introduction." Disability in German Literature, Film, and Theater. Edinburgh German Yearbook. Volume 4. Rochester, New York: Camden House, 2010. 1-13.
Junior, Nyasha and Jeremy Schipper. "Disability Studies and the Bible." New Meanings for Ancient Texts: Recent Approaches to Biblical Criticisms and Their Applications. Eds. Steven L. McKenzie and John Kaltner. Westminster: John Knox Press, 2013. 21-37.
Schneider, Werner and Anne Waldschmidt. "Disability Studies: (Nicht-)Behinderung Anders Denken." Kultur. Von den Cultural Studies bis zu den Visual Studies: Eine Einführung. Ed. Stephan Moebius. Bielefeld: transcript, 2012. 128-150.
Shakespeare, Tom. "Cultural Representation of Disabled People: Dustbins for Disavowal?" Disability & Society 9.3 (1994). 283-299.
Snyder, Sharon L. and David T. Mitchell. Cultural Locations of Disability. Chicago: University of Chicago Press, 2006.
Waldschmidt, Anne. "Disability Studies: Individuelles, soziales und/oder kulturelles Modell von Behinderung?" Psychologie & Gesellschaftskritik 29.1. (2005). 9-31.
Waldschmidt, Anne. "Disability Goes Cultural: The Cultural Model of Disability as an Analytical Tool." Culture – Theory – Disability: Encounters between Disability Studies and Cultural Studies. Eds. Anne Waldschmidt, Hanjo Berressem and Moritz Ingwersen. Bielefeld: transcript, 2017. 19-27. Accessed 22 March 2017 under: <http://www.transcript-verlag.de/media/pdf/c3518f77daff835d007919eeac733c3a.pdf>.
Waldschmidt, Anne, Hanjo Berressem and Moritz Ingwersen (eds.). Culture – Theory – Disability: Encounters between Disability Studies and Cultural Studies. Bielefeld: transcript, 2017.
Links
International Research Unit in Disability Studies at the University of Cologne, Germany: http://idis-eng.uni-koeln.de/
Waldschmidt, Anne, Hanjo Berressem and Moritz Ingwersen (eds.). Culture – Theory – Disability: Encounters between Disability Studies and Cultural Studies. Bielefeld: transcript, 2017. ISBN 978-3-8394-2533-6 (open access) https://www.degruyter.com/viewbooktoc/product/430191

4/11/2017

How albinism rose to the center stage of disability advocacy in Tanzania (and what this tells us about ‘local’ histories of disability)

by Sam De Schutter, University of Leiden.

In the morning of Saturday 3 December 2016 I arrived at the Mnazi Mmoja park in Dar es Salaam, Tanzania. After walking around for a while, trying to determine where I needed to be, I saw a group of people signing under a banner that said “Maadhimisho ya Siku ya Kimataifa ya Watu Wenye Ulemavu”. That sight told me that I was at the right spot, as I had been invited to join the “Celebration of the International Day of Persons with Disabilities”1. Organized by the Tanzania Federation of Disabled People’s Organizations (SHIVYAWATA), this International Day is used as a tool to gain public attention for the rights of people with disabilities, but also as an opportunity to directly communicate with the government. Apart from musical performances and sketches by a theatre group, most of the day consisted of speeches. These were directed at the government officials that were present. Among them was Tanzanian lawyer Dr. Abdallah Possi, now Deputy State Minister responsible for, among other things, all issues concerning disability. He is the first person with albinism to be appointed as deputy minister, and looking around at the crowd attending the celebrations, he was certainly not the only person with albinism present. Through my fieldwork I came to learn that this strong presence and high visibility of people with albinism is representative of the broader movement of disability advocacy in Tanzania. Through interviews and informal conversations, I started to understand which historical and socio-cultural elements contributed to this.

Deputy Minister Dr. Abdallah Possi at the events for the International Day of Persons with Disabilities in Dar es Salaam, 3 December 2017. (Photograph: Sam De Schutter)
The rights of persons with albinism in Tanzania are defended by the Tanzania Albinism Society (TAS), which was founded in 1978 and officially registered as a society on 29 April 1980. This was the first step of albinism rising to the center stage of disability issues in Tanzania. People with albinism were initially not regarded as disabled. As the current chairman of TAS formulated it in an interview, “they were just people with white skin”. However, the registration procedure to become a recognized association in 1980 demanded that the founders declared the purpose of their organization, and so they decided to register as a Disabled People’s Organization (DPO). This also meant that since then albinism has been regarded as a disability from the perspective of the Tanzanian government.

Although the connection between albinism and disability is of course not unique to Tanzania, much of the explaining of its disabling effects is done in reference to local circumstances. These arguments are rather straightforward: in a country where it is hard to avoid the scorching equatorial sun, having little or no natural protection against UV radiation becomes quite problematic. Moreover, in a society where having a dark skin is considered the norm, people with albinism are extremely visible and as such much more prone to stigmatization. This stigma is linked to what is probably the most prominent concern of organizations like TAS and other advocates for the rights of people with albinism. In Tanzania, as in other parts of Africa, there has been a strong historical link between disability and witchcraft, which has generated some specific beliefs about people with albinism. Different myths and ideas circulate: from regarding the birth of a child with albinism as a curse, over the belief that having sex with a woman with albinism cures AIDS, to the practice of using body parts of people with albinism in rituals to bring wealth and good fortune. This last myth has led to several killings of people with albinism, but also to cutting of limbs or digging up bodies. These events have been extremely mediatized both nationally and internationally, and have put albinism squarely at the center of the advocacy for disability rights in the country. Explaining these events is not only done in reference to local traditions of witchcraft, but also in terms of the rise of capitalism and its emphasis on values such as competition, wealth and success, which allegedly leads to politicians and businessmen seeking resort to these extreme practices. While partly traceable to pre-existing local beliefs, the specific targeting of people with albinism is a rather recent phenomenon. Research in Tanzania’s north-west mining frontier has linked this to an artisanal mining boom, where miners use body parts for profit maximization and protection. This mining boom “is firmly embedded in global commodity and wage labour markets and capitalist profit-optimisation strategies,” where the commodification of body parts is part of a wider process of commodification2.

That brings us to an important argument: as it is tempting to analyze albinism (or disability in general) in Tanzania as a culturally specific historical construct, it is easily forgotten that it is actually a very global history. Linking practices of witchcraft to the history of global capitalism is but one example of this. The history of disability advocacy in Tanzania should also be seen in a transnational framework. The development of TAS from an organization focused on special needs of persons with albinism (sunscreen lotion, wide brim hats, magnifiers, …) to a human rights based approach should probably be understood as part of an international shift towards a discourse centered on human rights. This is also connected to the fact that TAS, just like all the other DPOs in Tanzania, has been highly dependent on international funding. Especially since the rise of neoliberalism and the era of structural adjustment programs in the 1980s, DPOs in Tanzania had to connect to international agencies for funding and support. The first structural adjustment programs in Tanzania were introduced after Nyerere’s presidency in 1985, when socialist policies gave way to a more liberal course. In talking with TAS and other DPOs, they all contended that government support declined after Nyerere and eventually stopped, forcing them to seek funding from other places. Consequently, studying the history of TAS also means studying the broader history of international development in Tanzania, and for example the important role of an agency like NORAD (the Norwegian Agency for Development Cooperation) in funding organizations like TAS.

This short venture into some of the historical aspects of albinism in Tanzania reminds us about the cultural contingency of disability that we need to take into account when writing histories of disability. Yet at the same time, it warns us not to lapse into models that analyze these histories as self-contained ‘local’ or ‘African’ histories. The history of disability in Tanzania is firmly entrenched in global processes like colonialism, the global spread of capitalism or international development interventions. Researching the history of disability in Tanzania, also means looking at how people with disabilities and their DPOs engaged with these international developments. Only then can we come to a full understanding of what it means to celebrate the International Day of Persons with Disabilities in Dar es Salaam anno 2016.

The documentary ‘In the Shadow of the Sun’ follows Tanzanian activist Josephat Torner, who is Tanzania’s most famous campaigner against the discrimination of people with albinism.

Recommended Citation:
Sam De Schutter (2017): How albinism rose to the center stage of disability advocacy in Tanzania (and what this tells us about ‘local’ histories of disability). In: Public Disability History 2 (2017) 6.

Footnotes:
[1] This day has been called into existence by the United Nations in 1992 and has since ‘been celebrated annually on 3 December around the world’ (see http://www.un.org/en/events/disabilitiesday/)
[2] See Bryceson, D., Jønsson, J., & Sherrington, R. (2010). Miners' magic: Artisanal mining, the albino fetish and murder in Tanzania. The Journal of Modern African Studies, 48 (3), 353-382. doi:10.1017/S0022278X10000303.

3/31/2017

Doing Public Dis/ability History – The Touchdown Exhibition at the Art and Exhibition Hall of the Federal Republic of Germany in Bonn | 29 Oct. 2016 – 12 Mar. 2017

By Thea Jacob

The past and present of individuals with Down syndrome – their societal and historical stigmatization as "impaired" on the basis of apparent visible and/or cognitive effects of the variance in their sets of chromosomes – is almost unknown in our society, even though one in every six hundred pregnancies worldwide involves an embryo with trisomy 21. The organizers of the TOUCHDOWN exhibition work against this invisibility. Their main subject is the cultural history of individuals with Down syndrome; they follow the traces of these individuals in both historical and contemporary societies and exhibit historical artifacts, artwork and everyday objects by and/or about people with Down Syndrome.

Johanna von Schönfeld, Ohrenkuss edition „Superkräfte“ (Superpowers) 2013
© Martin Langhorst www.lichtbilderlanghorst.de
The organizers have chosen a prominent location to kick off the tour of their exhibition. Starting at the Art and Exhibition Hall of the Federal Republic of Germany in Bonn from 29 October 2016 to 12 March 2017, the exhibition will then be presented in different German cities. It originated within the framework of the participative research project TOUCHDOWN21. A team consisting of individuals with and without Down syndrome conceptualized the exhibition. With its "depth of content and vibrant diversity," the exhibition does not want to provide “ready answers,” but to "contribute to a lasting, more intelligent debate regarding societal diversity and participation."1

Visitors can take part in a tandem tour three times per week and that can be booked as an addition for visitor groups. The tandem team consists of two individuals, one with Down syndrome, one without; in the preparation period both partners have worked intensely together and have developed a narrative for the guided tour. The tandem tours have been completely sold out since January 2017. Participants’ feedback has always been positive; visitors and tour guides usually end up getting into conversation with one another.

I have been observing the exhibition team’s efforts since summer 2016 as part of the research phase for my Master’s in Public History2 at the Free University of Berlin. My final thesis will include the evaluation and analysis of the exhibition project with regard to its participatory working methods. Specifically, I would like to explore how the exhibition contributes to the fields of both Public History and Dis/ability History through its form and content.3

What are the theoretical assumptions and practical concerns of Dis/ability History implemented in the TOUCHDOWN exhibition? How do individuals with Down syndrome talk about themselves in the exhibition, and how are they being talked about by people without Down Syndrome? Below, I describe the collaboration of individuals with and without Down syndrome in preparing the exhibition as well as the exhibition itself, albeit briefly.


The Exhibit

Vincent Burmeister, illustration for the exhibition chapter “Today – Here and Now” 2016
© Kunst- und Ausstellungshalle der Bundesrepublik Deutschland GmbH
The framework of the exhibit is a fictional story devised by the TOUCHDOWN team: a spaceship with seven astronauts and one dog lands on the roof of the Art and Exhibition Hall in October 2016. This is the “Second Mission” from the planet kUMUSI, and all of the space travelers have Down syndrome. Once on Earth, they visit the descendants of planet kUMUSI’s “First Mission” and learn not only about the life of people with Down syndrome on Earth nowadays, but also about their history over the last 5.000 years. The exhibition presents the result of the Second Mission’s research and observations, and the trip’s log book accompanies the exhibition. Artist Vincent Burmeister presents this background story as a comic. Cartoon figures drawn on the walls guide visitors through the exhibition, as well as through the various sections of the accompanying book.4 Burmeister maintained close contact with the TOUCHDOWN team while he was developing the characters. The strong, tough, and self-willed figures are curious and eager to learn and have minds of their own with specific world-views and judgments about what they see and perceive.5

The exhibition begins in the foyer of the Art and Exhibition Hall with the landing of the Second Mission on the roof. The Second Mission characters are introduced on the way into the main exhibition space.
The second room, entitled “Today – Here and Now,” addresses the everyday-lives of individuals with Down syndrome. How do they live? What sorts of jobs do they have? What kind of music do they listen to? How do they deal with grief? Are they in love? What do they aspire to? What do they find annoying? The team-members who played a central part in the conceptualization of this room have very different answers to these questions. Individuals with Down syndrome provided most of the objects and artwork on display here and also composed the corresponding texts.
The third room (“The Invisible – Seeking Traces in the Past”) contains displays that might represent forms of existence of individuals with trisomy 21 over the past 3.500 years. But historical discovery has to remain speculative.
The fourth room is dedicated to the life and work of John Langdon-Down (“The Big Show – John Langdon-Down.”) In the 1860s, John Langdon-Down established in two institutions in England that provided a comprehensive therapeutic support system for individuals with cognitive differences. “Down syndrome” is named after him. Some of the individuals with Down syndrome in the TOUCHDOWN team appreciate and value his work, especially his respectful interaction with individuals with Down syndrome. This room also addresses the evolution of the term “Mongolism” and clarifies why individuals both with and without Down syndrome reject it.

The murder of individuals with physical and/or psychological differences during the Nazi era is the theme of the fifth room of the exhibition (“In Semi-Darkness – The Extermination”). According to the Nazi classification system, individuals with Down syndrome were declared as “unworthy life” and either sterilized by force (starting in 1934) or systematically murdered (starting in 1939).

TOUCHDOWN team members with Down syndrome think it is important to discuss this topic during their guided tours. Because some of the concerned do not want to speak themselves, they deliberately allow their tandem partners to lead the discussions. The tandem team prepares their visitors for this exhibition room and offers them the choice to decide if they would like to enter the room or not.

The sixth room of the exhibition presents topics from the field of research, health, and family (“Research – I am what I am”). In this room, prenatal diagnosis is explained as well as the decisions pregnant women are confronted with when they are carrying a fetus with trisomy 21. In the course of preparations for the exhibition, the TOUCHDOWN team participated in a workshop on the topic of abortion. Individuals with Down syndrome developed and produced the displays on view in this section of the exhibition.

The seventh and last room, entitled “The Discussion – Go or Stay?” provides visitors with an opportunity to evaluate their experiences during their tour through the exhibition. The exhibition protagonists – both the individuals with Down syndrome on Earth and the space travelers – summarize their arguments in a radio play installation, leaving the conclusion to the story open-ended. Visitors are invited to participate in the discussion by writing their opinions on pieces of paper and putting them in a box in the middle of the room.

Conclusion

The research questions that I raised at the beginning of this article can only be answered briefly here. My field research has shown that collaboration between individuals with and without Down syndrome, both in the preparation of the exhibition and in the exhibits themselves, can be successful under three conditions: first, people have to deal respectfully with each other, second, they must have enough time to work on the content together, and third, they have to develop a common narrative for the guided tours. In the case of this specific project, the participants had already developed strong relationships with one another over years of collaborative work for the “Ohrenkuss”-magazine.6 On the editorial staff everyone is treated as different, but equal, a principle that was also vital for the success of the TOUCHDOWN exhibition. The “Ohrenkuss” editorial staff also tested assisted7 work settings before this form was expanded during the exhibition preparations. Individuals with Down syndrome get more than only a chance to speak in the exhibition. Rather, they can present their own topics, and their everyday lives are portrayed from their own perspectives. Persons speak as experts of their own situation. They have decided themselves how they want to be (re)presented and what they want to present. Participating experts without Down syndrome have also presented their research results to the TOUCHDOWN team as part of the exhibit development process. If pictures or objects utilized in the presentation were not explained in klarer Sprache (Clear Speech),8 these materials, texts, and artifacts were prepared and/or translated by assistants to make them understandable to everyone. Julia Bertmann, a member of the advisory board with Down syndrome, evaluated the comprehensibility of the exhibition, suggested changes and authorized the texts. All texts in the exhibition and its accompanying exhibition book are written in klarer Sprache and only in klarer Sprache, as is the website for the TOUCHDOWN21 research project.
History is going to be written:
“[…] as an emancipatory, participation-oriented project. Its protagonists’ guiding principle is to change societal views and practices so as to enable individuals with particular physical characteristics and health issues to enjoy full subject status and unlimited participation.”9
The organizers of the TOUCHDOWN exhibit dedicated themselves to this vision. Through their work, they attempted to deliver initial responses to the core questions10 of Dis/ability History as it concerns Down syndrome.
As the first exhibition of its kind in the German-speaking world, the TOUCHDOWN Exhibition did not just achieve an important milestone in the field of Public Disability History. It demonstrated that extensive research has to be done in order to deliver new insights into the past realities of individuals with Down syndrome.11

Links


Recommended Citation:
Thea Jacob (2017): Doing Public Dis/ability History – The Touchdown Exhibition at the Art and Exhibition Hall of the Federal Republic of Germany in Bonn | 29 Oct. 2016 – 12 Mar. 2017. In: Public Disability History 2 (2017) 5. 


Footnotes:
[1] Informational material for potential borrowers at the Touchdown exhibit, p. 1, as of February 2016 (in the author’s possession). Can’t insert comments in footnotes, so will just say that I think “For potential borrowers is super awkward and I would replace it with “available”
[2] Public History is understood “as history for the public,” “history in public,” or “applied history.” The term is used both in the sense of the American pioneers of the field, who intended it to refer to history done by non-academics in public spaces, as well as “the teaching and analysis of the dissemination of historical knowledge to a wider public.” See: Zündorf, Irmgard: “Zeitgeschichte und Public History, Version: 1.0.” In: Docupedia-Zeitgeschichte, 11 Feb. 2010, URL: https://docupedia.de/zg/Public_History
[3] I have utilized the methods of “participatory observation” from the field of Ethnology as the basis for my own research. I attended TOUCHDOWN21 team meetings, events, and tours and took field notes that will serve as the foundation for comprehensive records that will in turn serve as my main sources.
[4] Kunst- und Ausstellungshalle der Bundesrepublik Deutschland, Bonn: TOUCHDOWN. Die Geschichte des Down-Syndroms, Bonn 2016.
[5] See Kunst- und Ausstellungshalle der Bundesrepublik Deutschland, Bonn: TOUCHDOWN. Die Geschichte des Down-Syndroms, Bonn 2016, p. 10-33.
[6] “Ohrenkuss – da rein, da raus” (Ear Kiss – Goes In There, Goes Out There) is a print magazine written by people with Down syndrome. It was started in Bonn in 1998 by Dr. Katja de Bragança. Today the magazine employs individuals nationwide. See http://ohrenkuss.de/projekt/historie and http://ohrenkuss.de/projekt/uber-ohrenkuss
[7] See Kunst- und Ausstellungshalle der Bundesrepublik Deutschland, Bonn (Hrsg.): TOUCHDOWN. Die Geschichte des Down-Syndroms, Bonn 2016, p. 8: “In this book, individuals with Down syndrome share their viewpoints with the world [Author’s note: they do this in the exhibition itself as well]. They talk about their lives and their day-to-day routines here and now, and they express their wishes for the future. They do this independently and with self-confidence. This required support. […] Numerous assistants supported the individuals with Down syndrome and opened up opportunities for them. They supported the processes without controlling or influencing them.“
[8] What is Clear Speech? Clear text is simply comfortable for everyone. Another important difference is that Clear Speech utilizes foreign words whenever they are necessary. […] The technical terms that are needed for a text are explained and then used consistently throughout the text. […] There is one more point that is important for clear speech: only a person who is interested in a topic can understand a text written in clear speech.”
[9] Waldschmidt, Anne/Schneider, Werner: “Disability Studies und Soziologie der Behinderung. Kultursoziologische Grenzgänge – eine Einführung.” In: Disability Studies, Kultursoziologie und Soziologie der Behinderung. Erkundungen in einem neuen Forschungsfeld. Bielefeld 2007, p. 9-28, here on p. 13.
[10] “How is the ‘Different’ distinguished from the ‘Normal’? Which scholarly discussions, political and social state interventions, and institutional control mechanisms determine the historical development process of a category like disability? […] How does mainstream society construct its normality in and through the design of a particular iconography of differences?” See Bösl, Elsbeth/Klein, Anne/Waldschmidt, Anne: Disability History: Einleitung, in: Disability History. Konstruktionen von Behinderung in der Geschichte. Eine Einführung. Bielefeld 2010, p. 7-10, here on p. 8. As described above, this pertains above all to rooms three, four, and five of the exhibition, which specifically address historical topics.
[11] An in-depth analysis of the R179 patient files in the Federal Archives in Berlin with regard to the personal histories and the history of the persecution of individuals with Down syndrome during the Nazi era would also be worthwhile. Further ancient-DNA-analysis could also provide insight into the lives of individuals with Down syndrome in the very distant past.