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] See: Hunt, N. R. (2015). For example, that’s how I met Kudzai Shava.
[7] See: Hunt, N. R. (2015). Finkelstein, V. 1996. “Modelling Disability.” Available at: http://disability-studies.leeds.ac.uk/files/library/finkelstein-modelling-disability.pdf (Accessed on 21st February 2017)

2/13/2017

Mediating Disability History to a broader audience: An Institutional Approach

by Sebastian Weinert

As Daniel Blackie pointed out recently on this blog, doing public disability history is an important, but sometimes challenging project.1 In the last couple of months we had the great opportunity to test different ways to communicate the history of a foundation for people with disability to the public. By doing so we gathered some inspiring experiences we are happy to share with other disability historians.

Guido von Donnersmarck sourrounded
by war invalids in Berlin-Frohnau
8th May 2016 has been an important date for the Fürst Donnersmarck-Stiftung zu Berlin (FDST): Exactly 100 years ago – in the midst of World War I – Guido Graf Henckel Fürst von Donnersmarck established the foundation as a scientific research institute in Berlin. He was an Upper Silesian magnate and one of the richest persons in Prussia.2 In August 1914 – shortly after the outbreak of the “Great War“ – he erected a military hospital at the heart of Berlin-Frohnau – an area near the German capital he had originally acquired for investment purposes. Two years later, von Donnersmarck decided to give his engagement for war invalids a permanent basis by bringing the FDST to life. The history of this institution was quite eventful. Due to several reasons the foundation’s mission to become a scientific research institute coping with the new injuries caused by modern weaponry never came into being. Not until the end of World War II the FDST started its actual work – with a pedagogic instead rather than medical or scientific approach. Eventually, the foundation grew to a sizable institution that provides support for people with disability with housing and leisure activities as well as the operation of two hotels in Rheinsberg and Bad Bevensen. The foundation furthermore runs the P.A.N. Centre for Post-Acute Neurorehabilitation in Berlin-Frohnau and is currently increasing its engagement for scientific research on the field of neurorehabilitation.

On the occasion of its 100th anniversary the management as well as the board of trustees decided to mediate the foundation’s history to a broader audience. Therefore a new Festschrift about the development of the organisation from 1916 until the recent days was commissioned. A similar project marked the occasion of the 75th anniversary 19913, but things have changed during the last 25 years. Not only did the organisation itself undergo drastic structural changes during the last decades, but the historical interest in the history of people with disability has also clearly increased in the new millennium. Research in Disability History has provided a new backdrop, helping us to better understand the history of this particular institution.4 Thus it was time for a new comprehensive monograph of the foundation’s history. After about one year of research and writing the study “100 Jahre Fürst Donnersmarck-Stiftung 1916-2016“ was published on 7th May 2016.5

A gaze at a lecture in front of visitors of the Villa Donnersmarck in Berlin-Zehlendorf

But this didn’t mean that our goal of communicating the organisation’s past to a broader public was fulfilled. Since our target groups are considerably heterogeneous, ranging from people with multiple disabilities to our employees and even political or scientific stakeholders, we opted for a multi-level mediation process. In addition to the monograph we wrote an easy-to-read summary that first appeared in our magazine WIR and was later issued as a stand-alone booklet.6 Furthermore we curated an exhibition including plenty of audio-visual material and organised several lectures that aimed at various audiences. This means we spoke in front of an academic public, the guests of our hotels in Bad Bevensen and Rheinsberg as well as the visitors of our cultural center Villa Donnersmarck. In addition we conceived a special lecture for the clients with intellectual disabilities at our sheltered independent housing facility.

Last but not least we posted images and short texts using the hashtag #FDST100 on Facebook, Google+, and Twitter to remind the audience of important events that took place in the past. By doing so we managed to reach a considerable number of people from all parts of society. More than 700 people attended to the lectures and exhibition tours, the WIR is almost completely out of stock, and several employees, who all got a personalized copy of the Festschrift as gift, provided enthusiastic feedback about the book. The exhibition was shown in the Villa Donnersmarck, our two hotels and will be shown at our P.A.N. Centre for Post-Acute Neurorehabilitation. Furthermore the exhibition was on display during our anniversary celebration in the STATION-Berlin, which was attended by 1600 people.

The exhibition about the history
of the FDST at the STATION-Berlin
But what has this to do with doing public disability history? First of all the history of the FDST is part of the general history of people with disability. Since many of them receive support of organisations like the FDST or are at least in touch with them, their life is heavily affected by developments in the social sector. Thus by tracing down the history of the FDST we also provide valuable insights in the social attitude towards people with disability. And we show how economic, political or social transformations influence the work of a foundation like the FDST. On the other hand exploring and mediating our history had a second aim: By doing so we wanted to give everybody – people with disabilities, employees, scientists or the general public – the opportunity to inform themselves about our past. That means that we got in direct contact with people with disability – for example during our lectures. Thereby we had the chance to share opinions about the history of our organisation as well as of the situation of people with disability in 20th and 21th century Germany. In this way we offered our clients or guests with disability an access to their own history – an attempt to empower them as interpreters of disability history in their own rights. And by the way: Mediating the results of our research the way we did takes the demand of public historians seriously to restart getting in touch with a broad audience outside the scientific world.7 For us this was also one of several approaches to give everyone a chance to participate in our anniversary year – whether with or without a disability.

Doing disability history is challenging, but also enriching. In our case we understand the organisation’s history mainly as a historical resource that gives us orientation in the present as well as a chance for giving people with disability the opportunity to get in contact with us and learn more about the organisation and its past.

Recommended Citation:
Sebastian Weinert (2017): Mediating Disability History to a broader audience: An Institutional Approach. In: Public Disability History 2 (2017) 2.


Footnotes:
[1] See Blackie, Daniel: Doing Public Disability History, in: Public Disability History 1 (2016) 16. Online: http://www.public-disabilityhistory.org/2016/09/doing-public-disability-history.html.
[2] See Manfred Rasch: Der Unternehmer Guido Henckel von Donnersmarck. Eine Skizze. Essen: Klartext 2016.
[3] See Golka, Thomas/Wieder, Horst: Geschichte der Fürst Donnersmarck-Stiftung 1916-1991, Berlin: Selbstverlag 1991.
[4] See e. g. Waldschmidt, Anne/Lingelbach, Gabriele (Hrsg.): Kontinuitäten, Zäsuren, Brüche? Lebenslagen von Menschen mit Behinderungen in der deutschen Zeitgeschichte, Frankfurt am Main: Campus 2016.
[5] See Weinert, Sebastian: 100 Jahre Fürst Donnersmarck-Stiftung 1916-2016, Berlin: Selbstverlag 2016.
[6] See Scharf, Bertold: Tagungsbericht: Kontinuitäten, Zäsuren, Brüche? Die Lebenslage von Menschen mit Behinderungen in Deutschland nach 1945: Periodisierungsfragen der deutschen Zeitgeschichte aus interdisziplinärer Perspektive, 20.03.2014 – 22.03.2014 Köln, in: H-Soz-Kult, 02.09.2014. Online: www.hsozkult.de/conferencereport/id/tagungsberichte-5520.
[7] See WIR-Magazin (2016) 1. Online: http://www.fdst.de/w/files/wir_pdf/wir_2016_01_160208_final_tags.pdf.

1/30/2017

The Future We Want: Demanding Rights for People with Disabilities during the Spanish Democratic Transition (∗)


By Mercedes del Cura

“Achieving 17 goals for the future we want” is the theme chosen in 2016 to celebrate the International Day of People with disabilities. The slogan reminds us of the gap that in spite of the great steps which have been made towards integration and recognition, still exists in creating a more inclusive and equitable world. A society in which people with disabilities will be able to decide about their lives, taking an active part in political processes and decisions that could affect them.

In the case of Spain, the political discourse during the democratic transition period built the foundations towards an inclusive future. Franco’s death in 1975 opened up public interest for intense social and political participation; social movements became an essential tool for building a democratic country1. Concerning the stigmatisation of disability, a change of discourse and representation could be observed. Critical attitudes already existing in the last years of the Franco regime became more visible2. Aware of the chances and possibilities that the changing political context could mean, people with disabilities put pressure on the future leaders of Spanish politics to resolve the model of weakening, paternalistic protection in practice under the dictatorship3 and to ensure the incorporation of people with disabilities into a society of citizens.

At the end of the year 1976, people with disabilities started public mobilisation and the following demonstrations became something like a regular institution that accompanied political change until the end of the transition period. Activists used the media to make their demands public; they took part in street protests convened by neighbourhood associations, political groups or by groups of disabled people; they participated in hunger strikes, sit-ins inside churches and administrative buildings4. The longest sit-in took place in the head offices of the Rehabilitation and Re-education Service for the Physically and Mentally Disabled (SEREM) in Barcelona, lasting a total of 45 days during the winter of 1978 5.
Protest by people with intellectual disability and their families in 1978. On the banner that led the march “Subnormal people demand a place in society” could be read and behind it, “a silent, marginalised minority shouts from its solitude... Justice! Social justice!” (Source: Asociación por la memoria histórica del Partido del Trabajo, Archivo Histórico, http://www.pte-jgre.com/fotografias/galeriafotografiasindice.htm)
Some of the activists who participated in these mobilisations belonged to the formal associations created under the former dictatorship, but most of the participants came from the new grassroots movements, which gained strength especially by people active in the field of physical disabilities. This movement demanded the participation of people with disabilities in political decision-making and, moreover, required actions and steps towards integration regulated within the general legislative framework6.

People with disabilities wanted architectonic barriers to be removed and public transport and housing to be adapted; they wanted to finish protected employment and guaranteed access to the free labour market; they wanted an unemployment benefit for those who could not find work and the inclusion into the Social Security System. They also requested to abolish SEREM because it had already been proved to be inoperative and it was in itself, due to its specificity, a marginalising element of politics. They defended that their needs should depend on an overall action by the government, funded by the General State Budget.

These mobilisations were not always well received by the public authorities. Some actions were not authorised and there were confrontations between activists and police. Additionally, supporters of people with intellectual disabilities had to face the criticisms that they were seen as manipulating and politicising disabled people. Supporters argued that these criticisms had to do with the general misconception that persons with intellectual disabilities were not able to make their own decisions and simply enjoyed a civil right recognised by the new constitution7.
People with physical disabilities from the “MinusválidosUnidos” group demanding adapted public transport during a neighbourhood protest organised in Madrid in 1976 (Source: Triunfo, nº 715, 1976)
In spite of the critic and the obstacles activists had to face, their direct forms of action showed an immediate effect. Political parties became interested in disability rights and included demands for emancipation in their campaigns for the first democratic elections in 1977. However, once the elections had taken place subsequent political implementation was missing which led to the impression that the interest in disability rights had been functionalised in order to win votes more than to change institutional settings.

The new Constitution, passed in the winter of 1978, included an article that established the public authorities’ obligation to give specialised attention to and ensure the same rights for people with disabilities that was granted to all citizens:

“The public authorities shall carry out a policy of preventive care, treatment, rehabilitation and integration of the physically, sensorially and mentally handicapped who shall be given the specialised care that they require, and be afforded them special protection in order that they may enjoy the rights conferred by this Title upon all citizens” (art. Nº 49).

Again, the positive discrimination implied by this article was not well received by all people with disabilities. If the demand for equality fixed in the Constitution really included “all” Spaniards, why was it necessary to add a specific article of this type?

The same year the Constitution was passed, Ramón Trías Fargas – a Catalonian Member of Parliament and father of a child with Down syndrome – convinced the Parliament to create a special committee to analyse the situation of people with disabilities. This technical report should be used as a basic document for a draft legislation on disability. The committee’s work, which was advised by the formal associations (with proposals that implied less radical changes than those demanded by the base groups), culminated in the promulgation of the first Law on Social Integration of the Disabled in 1982 (Ley de Integración Social del Minusválido, popularly known as LISMI). The law was strongly influenced by the 1971 and 1975 United Nations’ declarations on the rights of disabled persons.

The LISMI was a law with a specific welfare approach, which aimed at the improvement of rehabilitation and social services. Beyond this, it laid down integration measures directed at creating equal opportunities for people with disabilities. For instance, the law obliged public and private companies to include a minimum percentage of people with disabilities in their staff; it stipulated their access to free education in the ordinary education system; and established home-based care programs in order to avoid closed institutions.

Although this was the first time that subjective rights for people with disabilities were established, the law was criticised from its beginnings. Activist considered that it was still a “discriminatory” measure and that it lacked funding to carry out effectively the proposed integration measures and services. The fact is that LISMI did not manage to accomplish all its aims and it became necessary to develop additional regulations in the following years to make the law more effective. However, despite its shortcomings this law -applicable until 2013- laid the foundations for the development of the future public disability policies8.

The advances made during the democratic transition period did not cover all expectations formulated by the people with disabilities. However, important changes were achieved that showed positive effects in their everyday lives. Especially significant for this historical experience was the insight that working together and speaking with a united voice is extremely important in order to increase influence in the decision-making spheres.

(∗) Activism by people with disabilities is one of the issues explored by the Group of Social Studies of Medicine (University of Castilla-la Mancha) in a three-year national research project aimed at analysing discourses on disability and socio-cultural changes during late Francoism and the Spanish democratic transition. [Project title: El discurso acerca de la discapacidad en el tardofranquismo y la transición y su influjo sobre el proceso de cambio socio-cultural en torno a la normalidad corporal y mental. Funded by the Ministry of Economy and Competitiveness (Spain)]

Recommended Citation:
Mercedes del Cura (2017): The Future We Want: Demanding Rights for People with Disabilities during the Spanish Democratic Transition. In: Public Disability History 2 (2017) 1.


Footnotes:
[1] Sánchez León, P. (2011), Radicalism without representation. On the character of social movements in the Spanish transition to democracy. In: Alonso, G & Muro, D. (eds), The Politics and Memory of Democratic Transition. The Spanish Model. New York-London: Routledge, pp. 95-11.
[2] Del Cura, M. & Martinez-Perez, J. (2016), From resignation to non-conformism: association movement, family and intellectual disability in Franco’s Spain (1957-1975), Asclepio, 68 (2), p. 149. doi:http://dx.doi.org/10.3989/asclepio.2016.21.
[3] Martínez-Pérez, J. & Del Cura, M. (2015), Bolstering the greatness of the Homeland. Productivity, Disability and Medicine in Franco’s Spain (1938-1966)”, Social History of Medicine, 28 (4), pp. 805-824.
[4] Bregain, G. (2013), An entangled perspective on disability history: the disability protests in Argentina, Brazil and Spain, 1968-1982.In: Barsch, S.; Klein, A. & Verstraete P. (eds.), The Imperfect Historian. Disability histories in Europe. Frankfurt am Main: Peter Lang, pp. 133-153.
[5] Guillén, A. (1994), La Participación. In: Vilà i Mancebo, A. et al., Crónica de una lucha por la igualdad: apuntes para la historia del movimiento asociativo de las personas con discapacidad física y sensorial en Catalunya. Barcelona: Instituto Guttman, pp. 63-69.
[6] Giralt, F. (1978), Los minusválidos. Barcelona: Dopesa; colección “Los Marginados”.
[7] López Iglesias, J. (2014), 50 años con las personas con discapacidad intelectual. Madrid: Plena Inclusión.
[8] Moreno Bonilla, J. M. et al (2012), 30 años de la LISMI: un recorrido de inclusión. Madrid: CERMI

1/09/2017

Winter Break

While a cold wind is blowing over Europe, football players as well as brown bears hold their annual winter sleep, Christmas trees are being burned and many are trying to lose some weight after the New Year celebrations, the Public Disability History blog will be silent for some weeks. From the beginning of February we will be back with more refreshing reflections on the many connections that can be made between disability, history and the public. Do not hesitate, however, to contact us in the mean-time in case you would like to contribute. We’ll add you to our annual schedule and reserve one of our precious slots!