3 Facts you should know about Albinism in Tanzania

Atrocities against people with albinism (PWA) are not solely a Tanzanian issue but they are an issue across the African continent. In 1998 the first documented case of an atrocity against PWA took place in Botswana. In Guinea, another atrocity against PWA came to light in 1994. Today the survivor is working with the NGO Under The Same Sun in Canada, an organization that helps people with albinism overcome often deadly discrimination through education and advocacy.[1]

This short article, however, will focus on the situation of people with albinism solely in Tanzania. Tanzania hosts the highest number of people with albinism in the world. According to statistics, over 2% of the 40 million population: 200,000; people are living with albinism.[2] This is due to the fact that there is little movement of people from the regions with a high density of albinism; hence, the transfer of genes within the community is enhanced and the recurrence of albinism in children continues.

In the 2000s the world was hit by the killings of PWAs in Tanzania, particularly the young and women. By May 2010 Under the Same Sun put the toll of PWAs murdered at 57 in Tanzania.[3] In their annual report 2015/2016, Amnesty International gathered information regarding a child with albinism who was murdered for his body parts earlier in 2015. [4] However, there is little effort yet from the government to ensure that people with albinism live safely.[5]

#1. Albinism as a genetic condition

Albinism is caused by the condition known as ‘oculocutaneous’ which affects the skin, eyes and hair’s pigmentation. Both parents need to have the albinism genes in their DNA to be able to pass albinism on to their children.[6] Therefore this is purely a medical condition. Due to the poor pigmentation of the skin, hair, and eyes, most of the PWAs have sensitive skin especially those living in the tropical climate, thus a higher risk of skin cancer.[7] These conditions place PWAs in a disadvantaged situation in addition to the social exclusion that comes from ignorance of their condition. But these are “just” the biological sufferings that they endure. The social sufferings tend to be much more significant.

#2. Albinism and social exclusion

PWAs face similar challenges all over the world. However, the sufferings that PWAs endure in Tanzania are critical from the hot weather, attacks and possibly a witchcraft death. At a very young age children with albinism face rejection not only from society but also family members as well. They are considered as outcasts, and at the same time they are called names and shamed.[8] Most Tanzanians do not know what causes albinism hence it is easier for them to believe in misconceptions and rumours which lead to discrimination on PWAs.  In Tanzania, the term zeru zeru (ghost like creature), is used to refer to PWAs, which is in itself derogatory, demoralizing and making persons with albinism feel they are less than human. In fact, albinism is seen as a deformity, just in the way that it is categorized, ‘ulemavu wa ngozi‘ which translates into disability of the skin. A sociologist Virginia Small (1998), in her comments on names used to refer to PWAs, wrote, “Also, people, even medical professionals use the term “suffers from.” This is also incorrect. I do not suffer from my albinism.”[9]

#3. Gender Dimensions of Albinism

Gender-based sexual assaults on women with albinism are common in Tanzania due to the bizarre belief that having sexual intercourse with women with albinism could cure HIV/AIDS of the perpetrator.[10] These misconceptions and malicious belief do not only contribute to women and young girls being raped, but furthermore make them more susceptible to HIV/AIDS infections, which – due to the poor medical conditions in Tanzania – infringes on their right to life and security.

Sources

[1] Vicky Ntetema recorded by Ashura Kayupayupa during the conference on Action on Albinism in Africa, Dar es Salaam, (Personal Archive) June,2016, (Audio is available if needed)
[2] Telegraph, ‘Tanzania’s macabre trade: albinos killed for body parts’, http://www.telegraph.co.uk/news/worldnews/africaandindianocean/tanzania/3402526/Tanzanias-macabre-trade-albinos-killed-for-body-parts.html, 08 Nov 2008, (Accessed 1 July 2016)
[3] Telegraph, ‘Seven new albino killings in Tanzania and Burundi’ (Weblog) http://www.telegraph.co.uk/news/worldnews/africaandindianocean/tanzania/7687951/Seven-new-albino-killings-in-Tanzania-and-Burundi.html, 06 May 2010 (Accessed 1 July 2016)
[4] Amnesty International, ‘Tanzania 2015/2016’ https://www.amnesty.org/en/countries/africa/tanzania/report-tanzania/, 2015, (Accessed 28 June 2016)
[5] Ibid
[6] Pooe-Monyemore, M.B.J.,Mavundla, T.R. & Christianson, A.L., 2012, ’The experience of people with oculocutaneous albinism’, Health SA Gesondheid 17(1), Art. #592, 8pages. doi: http://dx.doi.org/10.4102/ hsag.v17i1.592
[7] Ibid
[8] Virginia L Small, Sociological Studies of People of Color with Albinism, http://www.goldenalbinism.com/My%20report.htm, 1998,( Accessed 1 July 2016)
[9] Ibid
[10] Color foundation, Life of Albinos in East Africa threatened: A most bizarre and dramatic consequence of having a skin color disease, http://www.colorfoundation.org/(Accessed 12 july 2011).

About Ashura Kayupayupa 1 Article
As a human rights lawyer I share a common concern for the issue of domestic violence against women. Evidence shows that this form of abuse remains very common across the world. By challenging inequality, domestic violence may be reduced. This is why I founded USAWA project, Tanzania (means Equality in Swahili). In respect of all the challenges, women must face throughout their life; “Usawa” project can be a means to support liberating them. Through visual arts, the prejudice and stereotypes on gender will be challenged. USAWA wants to place an emphasis on positive stories of gender equality in order to challenge commonly held perceptions on gender.

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