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.
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 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.
History is going to be written:
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
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.↩
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 |
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 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.”9The 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.↩
