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.

3/13/2017

Old medical records as historical sources - an accessible film

By Bettina Alavi and Eva Franz

Located at the psychiatric clinic in Heidelberg is the internationally known Collection Prinzhorn, in which works of mentally ill artists are archived and exhibited.1 Its founder, psychiatrist Hans Prinzhorn (1866-1933), laid the foundations for the study of art and art therapy in psychiatric context. From 1910-1921 he was hired by the Heidelberg Psychiatric University Clinic to develop an existing small art collection made by mentally ill persons. His book, "Bildnerei der Geisteskranken" ("Sculpture of the Mentally Ill"), was received by artists such as Max Ernst. Today's scholarly discussion of Prinzhorn's artists, in addition to dealing with the artistic products, also applies to the biography of the patients. The reconstruction of their life stories is based on historical medical records.2

Historical medical records are sources that were primarily written about the patient: the doctor noted symptoms, diagnosis, and treatment. Sometimes there were also letters from relatives. A further part consisted of official documents such as instructions, invoices, etc. Only in exceptional cases were letters, drawings, or pictures by the patient included. Nevertheless, the course of the patient's life can at times be at least partly traced. In addition, they provide insights into the historical background such as the roles of patients and caregivers, as well as insurance issues and much more.

With the demand for inclusion in education and with the development of disability history, the question arises about the provision of adequately prepared knowledge about mental illnesses and their treatment in history. Accessibility for all is an important basic condition: both to the Collection Prinzhorn, and to the materials made for educational purposes in the museum. The accessible preparation of these materials is the focus of a project in history didactics. Teacher training students at the University of Education in Heidelberg created accessible film sequences,3 which elaborate aspects of the history of psychiatry around 1900 in the context of the Collection Prinzhorn for a diverse group.

A product of the project is the film sequence "Alte Krankenakten als Quellen" ("Old medical records as historical sources").4 In the section shown here, the notion of historical source is clarified using an example of a medical record. Accessibility is enhanced through linear narration. This narration consists of language and visualization, which additionally structures the section and explains the content. The language is based on an everyday comprehensible vocabulary and follows the rules of Leichte Sprache (German version of Simple English).5 The moderation is calm, the articulation is clear. The source work is equated with detective work; a detective is repeatedly used as stylistic means. This visualization loosens the content humorously but not ironically. The lack of background music is intended and mental breaks are built in.



Making a film accessible is more than just methodological adjustments. It demands a deliberate reduction of the complexity of content through didactic elementarization.6 This concept is based on theories originated in special education. Leading questions for the process of elementarization are: What are the basic structures of the subject? What do people experience? And what is important from a social perspective? The elaboration of these "elementary structures", "elementary experiences" and "elementary basic principles of life" serve to elucidate the core of the matter.7

In the context of history didactics, the film sequence corresponds to the method of inquiry-based learning, as the detective work provides a method of identifying a historical source and shows ways to use it: Asking questions to a historical source is explicated. This is regarded as an important competence on the path to historical awareness.8

Recommended Citation:
Bettina Alavi & Eva Franz (2017): Old medical records as historical sources - an accessible film. In: Public Disability History 2 (2017) 4.


Footnotes:
[1] www.prinzhorn.ukl-hd.de/index.php?id=84, visited 2/22/2017.
[2] Fuchs, Petra (2010): "Sei doch dich selbst". Krankenakten als historische Quellen von Subjektivität im Kontext der Disability History. In: Elsbeth Bösl, Anne Klein, Anne Waldschmidt (Hrsg.): Disability History. Konstruktion von Behinderung in der Geschichte. Eine Einführung. Bielefeld, 105-123
[3] Vision Kino gGmbh (Hrsg.) (2013): Praxisleitfaden Inklusion und Film. Methoden, Tipps und Informationen für eine inklusive Filmbildung. Berlin: www.visionkino.de/publikationen/leitfaeden/praxisleitfaden-inklusion-und-film, visited 2/22/2017.
[4] The film was made by Anna Güse and Alena Roberts in Alavi’s and Franz’ seminar "Disability History" in winter semester 2016/17.
[5] www.leichtesprache.org, visited 2/22/2017.
[6] Lamers, Wolfgang/Heinen, Norbert (2006): Bildung mit ForMat – Impulse für eine veränderte Unterrichtspraxis mit Schülerinnen und Schülern mit (schwerer) Behinderung. In: D. Laubenstein, W. Lamers, N. Heinen (Hrsg.): Basale Stimulation kritisch – konstruktiv. Düsseldorf, 141-205.
[7] Seitz, Simone (2006): Inklusive Didaktik: Die Frage nach dem Kern der Sache. Zeitschrift für Inklusion www.inklusion-online.net/index.php/inklusion-online/article/view/184, visited 2/22/2017.
[8] Reeken, Dietmar von (2014): Historisches Lehren und Lernen. In. A. Hartinger, K. Lange (Hrsg.): Sachunterrichtsdidaktik für die Grundschule. Berlin, 98-116.

2/27/2017

Ubuntu and ways of being in the world: Listening to my colleagues describe Southern African disability history and theory

By Maria Berghs

I am not a historian but I got curious about neglected histories linked to African theory and models of disability when I was working with my colleagues from Zimbabwe - Dr. Tsitsi Chataika and the disabled disability rights activists Kudzai Shava and Abraham Mateta. We were collaborating on a book chapter for an edited collection entitled Advocacy in Conflict: Critical Perspectives on Transnational Advocacy.1 As a group, we were trying to elucidate some of the transnational and national struggles we had seen in our own work in Sierra Leone and Zimbabwe around advocacy for disability rights. While we were writing together, my colleagues stated that they had an understanding of disability rights linked to South African understandings of Ubuntu. Ubuntu embodies a Southern African humanist and collective ethical philosophy. It states that our way of being human is connected to the humanness of other people. My colleagues also located this philosophy within their own histories of decolonisation and disability activism as a practice. I had come across the concept of ubuntu in terms of South African transitional justice and reconciliation but I had no idea what they meant when correlating it to ‘disability’ or ‘rights’.

In order to engage in a more respectful cross-cultural dialogue and collaboration, I thought I should learn about what ubuntu means philosophically, especially in terms of epistemology and ontology of disability.2 An engagement with disability studies already requires concepts and frameworks that are relegated by mainstream academia. Additionally, there is also the work of understanding what decolonisation now implies and rethinking (dis)ableism through collaborative but accessible work. Thinking about why decolonisation has become so pertinent again, especially when it comes to Southern theory and the turn to the South,3 working through the real world implications of such ideas is usually where discourses around disability tend to stop and academics (usually working alone) cite ‘cultural model’. I think ‘culture’ now functions as a way to silence or put ‘disability‘ in particular academic boxes on paper. For instance, there is almost a tick-box way of writing anthropologically where you sprinkle your essay with some descriptive concepts, definitions of impairment or proverbs linked to disability and then call it ‘indigenous’ or ‘cultural’. I am guilty of this too. Yet, what is often referred to as ‘cultural’ is a specific way of presently being in the world that is informed by a past. Often those ‘cultural’ models also stop at our Western understandings of what ‘disability’ physically embodies because most of our work uses Western philosophy.


South African social rights activist and Anglican bishop Desmond Tutu explains Ubuntu (English).

Ubuntu is not a ‘cultural model’ but a social ethics which describes how a person is a person through their relationships with other people. I am through the humanness and diversity of the other. The expression people use in the South African Zulu language is akin to: I am because we are. In South Africa, what it means to be human and our relatedness to others also encompasses the spiritual relationships to the ancestors and land. The concept of diversity is thus wider than just biological and becomes correlated to relationship between the spiritual and ecological. This has repercussions for understanding impairment as not just biologically located but as cognitive, sensory, mental, physical and (eco) spiritual.

Yet, ubuntu is also a ‘normative claim’4 about how we should live and thus tells us something about the way in which disablement occurs because of lack of respect for the diversity of what it means to be human. Impairment can also be reactionary to a history of colonisation and violence. That’s why I think some of the most exciting work currently, especially using ethnographic methods, is being done by historians - almost excavating this history.5 Thus, in a second step, I wondered how you would view disability as linked to ubuntu in terms of restorative ethical practices to ensure the diversity of what means to be human. How did people understand a struggle for this shared humanity in terms of history of decolonisation? How does it link to history of activism in South Africa and other African countries? What is the link to the history of advocacy around disability? Do we have to think about ubuntu as an African model of disability?

Let’s be clear. I am not an activist either but I am interested in the sociology of disability and rights. The connections between the different theories or models and the practices they engender. During my PhD in sociology and social policy, I was very lucky that one of my supervisors was the British academic and disability activist Professor Colin Barnes, quite a few of my international colleagues who I studied with at the University of Leeds6 consider themselves activists and many of my research participants engage in advocacy around disability issues but don’t call themselves activists.

One of Colin Barnes’ heroes was Vic Finkelstein and so I read about his life history. That’s how I learned about the South African anti-apartheid connection to the origins of British activism around disability. I thus also started reading about differing forms of African activism. What’s nice about Vic Finkelstein’s work is that he doesn’t take ‘models’ too seriously7 and understands that they are linked to particular histories, people and places. For an activist like Finkelstein, you can call the model what you want, as long as it ensures future societal emancipation. His life and work in the diaspora also call into question how Western imaginaries construct notions such as ‘global south’ and ‘disability’. Thus working backwards, it makes sense to ask how and if our past societal emancipations or activisms are linked to particular African philosophies and how those affect models of disability.

Despite having undertaken such research to understand the importance of ubuntu to my colleagues, I had to write a paper about it in my spare time. More and more, the rigid rules of academia mean if you want to climb the career ladder, you are advised to stop publishing in places like African Journal of Disability and on topics that are marginalised. This is the complete opposite message you get within disability studies where increasing diversity, collaborating with your disabled colleagues, contributing to knowledge and ensuring accessibility of your research, especially in African context, is applauded. Moreover, researching and critically questioning why some theories and histories are being neglected is to be prioritised, especially if those insights come from people we work with. Those are also active processes of decolonisation that we need to engage in and shifts in our thinking about whose voices and perspectives matter.

Recommended Citation:
Maria Berghs (2017): Ubuntu and ways of being in the world: Listening to my colleagues describe Southern African disability history and theory. In: Public Disability History 2 (2017) 3.

Footnotes:
[1] Chataika, T., Berghs, M., Mateta, A. & Shava, K. 2015. ‘From whose perspective anyway? The quest for African disability rights activism’, in A. De Waal (ed.), Reclaiming activism: Western advocacy in contention, pp. 187–211, Zed Books, London.
[2] Berghs, M. (2017). Practices and discourses of ubuntu: Implications for an African model of disability?. African Journal of Disability, 6, 8.
[3] Comaroff, J., & Comaroff, J. L. (2015). Theory from the South: Or, how Euro-America is evolving toward Africa. London and New York: Routledge.
[4] Van der Merwe, W.L. (1996) Philosophy and the multi-cultural context of (post) apartheid South Africa. Ethical Perspectives. 3(2): 1-15.
[5] See: Hunt, N. R. (2015). A Nervous State: Violence, Remedies, and Reverie in Colonial Congo. Durham, NC: Duke University Press.
[6] For example, that’s how I met Kudzai Shava.
[7] Finkelstein, V. 1996. “Modelling Disability.” Available at: http://disability-studies.leeds.ac.uk/files/library/finkelstein-modelling-disability.pdf (Accessed on 21st February 2017)