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.

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