People With Albinism
In this article, we shall address the human rights of people with albinism. Persons with albinism continue to be killed, attacked, or threatened in many countries. This is a serious human rights issues, and one that has received the attention of international organizations such as the United Nations. We will discuss what is albinism, places and cases where persons with albinism are persecuted, and responses by activists, domestic officials, as well as other state and international actors to proceed the rights of those persons with albinism.
What is Albinism?
According to the Office of the High Commissioner for Human Rights (OHCHR), “Albinism is a rare, non-contagious, genetically inherited condition which occurs worldwide regardless of ethnicity or gender. It most commonly results in the lack of melanin pigment in the hair, skin and eyes (oculocutaneous albinism), causing vulnerability to sun exposure. This can lead to skin cancer and severe visual impairment. Both parents must carry the gene for it to be passed on to their children, even if they do not themselves have manifestations of the condition.”
As Hong, Zeeb, & Repacholi (2006) explain, persons with albinism “are [not only] more susceptible to the harmful effects of ultraviolet radiation exposure… [but] [t]his population must [also] deal with issues such as photophobia, decreased visual acuity, extreme sun sensitivity and skin cancer. People with albinism also face social discrimination as a result of their difference in appearance. The World Health Organization is currently investigating the issues concerning this vulnerable population.”
Persons with albinism have been attacked because some have viewed these individuals as “ghost spirits, called zeru zeru or “nothingness.” They are thought stupid or evil. They are deemed both less and more than human” (Ager, 2015). Others believe that the body parts of persons with albinism can be used for healing. For example, “Their body parts are coveted for witch-doctor potions that promise riches, bounteous harvests, and election victories. An albino arm might sell for $4,000 and an entire body—limbs, genitals, ears, tongue and nose—can fetch up to $75,000, according to the International Federation of Red Cross and Red Crescent Societies” (Ager, 2015).
It has been reported that “Their bones are believed to be sold to practitioners of traditional medicine in Malawi and Mozambique for use in charms and magical potions in the belief that they bring wealth and good luck. The macabre trade is also fuelled by a belief that bones of people with albinism contain gold” (Amnesty International, 2016). There are other beliefs that include one where some feel that “persons with albinism do not die but simply disappear, and the practice of infanticide at birth on the pretext that the baby was stillborn” (UN, 2016).
In other cases, “Girls and women with albinism are also raped by men who believe the myth that their HIV can be cured that way” (Ager, 2015). In such cases, ” Women with albinism are called Machilitso (cure) – feeding into the belief that having sex with a person with albinism can cure HIV. One woman told Amnesty International: “Without being brave you may end up throwing away the child because of the abuse and insults”” (Amnesty International, 2016).
Human Rights Abuses Against Persons With Albinism
Sadly, the persecution and discrimination that persons with albinism is something that has existed for centuries, and something that continues to cause a great deal of strife for these individuals today. Not only are people going after persons with albinism for the reasons mentioned above, but often times, families and community members will also shun a mother if she gives birth to a child with albinism. It has been noted by the United Nations that there have been cases of abandonment (and in less instances, infanticide) towards infants and children of albinism (OHCHR, ND).
Below, we shall discuss the human rights abuses committed against people with albinism in Tanzania and Malawi.
Albinism in Tanzania
In Tanzania, it is said that one child out of 1400 is born with albinism (Ager, 2015). Tanzania has one of the worst histories with regards to the human rights violations of persons with albinism. In countries such as Tanzania, there is a belief that sacrifices can help protect an individual or their family (Pew, 2010). Human rights groups such as Under the Same Sun have mentioned this, as they believe a connection exists with regards to treatment of groups such as persons with albinism.
Albinism in Malawi
There are anywhere from 7000 (Amnesty International, 2016) to about 10,000 persons with albinism living in Malawi (Time, 2016). The country has become one of the most dangerous places for people with albinism.
From the latter part of 2014 to the middle of 2016, there has been at least 65 murders of people with albinism (UN, 2016). In Malawi, people go after persons with albinism because of a belief that body parts of people with albinism can be used for healing (Time, 2016) and for protection against evil.
Ikponwosa Ero, who is a United Nations expert on persons with albinism, said about Malawi that “Persons with albinism, and parents of children with albinism, constantly live in fear of attack.” She went on to say that ““Many do not sleep peacefully and have deliberately restricted their movement to the necessary minimum.” She also said, “The frequent involvement of close relatives in cases of attacks is highly disturbing, and persons with albinism are unable to trust even those who are supposed to care for and protect them. Consequently, persons with albinism in the current context of attacks are locked in a spiral of fear and poverty” (UN, 2016).
There have been dozens of disappearances and killings of persons with albinism in recent years. From November 2014 to June 2016, 18 people with albinism were killed in Malawi, with five more persons with albinism unaccounted for. Amnesty International (2016) believes that “the actual number of people with albinism killed is likely to be much higher due to the fact that many secretive rituals in rural areas are never reported. There is also no systematic documentation of crimes against people with albinism in Malawi.” It seems that there has been a rise in killings, with April 2016 being one of the deadliest months, with four individuals killed (Amnesty International, 2016).
Deprose Muchena, who is Amnesty International’s director for Southern Africa, has also advocated for the rights of people with albinism. Muchena said through a statement, “The unprecedented wave of brutal attacks against people with albinism has created a climate of terror for this vulnerable group and their families who are living in a state of constant fear for their lives.” Muchena went on to add that “The time has come for the government of Malawi to stop burying its head in the sand and pretending that this problem will just go away. Talking will not end these attacks. Concrete action is urgently required.”
Human Rights groups such as Amnesty International have criticized Malawi police for not doing enough to protect people with Albinism. Amnesty International (2016) has written that
According to the Malawi Police Service, at least 69 crimes against people with albinism have been documented since November 2014. However Amnesty International has found that the police lack adequate training and skills needed to investigate such crimes.
The Malawi Police Service lacks resources, such as transport, to respond in a timely way to reported crimes and maintain visible policing in districts reporting high numbers of attacks.
In addition, there are fears that some police officers carry the same prejudices against people with albinism that exists within the wider Malawian society and fail to take human rights abuses against people with albinism seriously.
The Director of Public Prosecutions admitted to Amnesty International that the police prosecutors do not know all the relevant laws to deal with crimes against people with albinism.
The Malawi government has tried to take steps to combat attacks and killings against people with albinism. For example, The government issued a response plan in 2015 for this issue. And while activists have given praise to the state for doing this, insufficient resources have made it difficult to effectively implement their actions.
Human Rights for Persons with Albinism
International human rights activists have been talking about the dangers that persons with albinism are facing, and are working to not only raise awareness, but also to find ways to protect them. In 2013, the United Nations Human Rights Council passed a resolution on the rights of persons with albinism in which they called for the protections of human rights based on prior international human rights law such as the Universal Declaration of Human Rights (UDHR), the Convention on the Rights of the Child (CRC), among other human rights documents.
However, despite this resolution, the document itself is non-binding. In addition, persons with albinism continue to be attacked. This treatment has left some to speak out, calling for more attention and more action to protect these individuals.
In October of 2015, Ikponwosa Ero, who is the the United Nations human rights expert on human rights issues related to persons with albinism put out a press release in which she stated that “an apparent increase in demand for body parts of persons with albinism has been has been reported in the run up to elections in several African countries.” He also explained that ““Persons with albinism are amongst the most vulnerable persons in the region,” and also “After centuries of chronic neglect of their plight, they have been relegated to the fringes of society where stigma and discrimination in every aspect of their lives have been normalized” (UNOHCHR, 2015).
Ero spoke about the horrible conditions that persons with abinism continue to face. Because of this, she called for the immediate actions by government to protect persons with albinism (UNOHCHR, 2015). One policy recommendation that scholars and activists have for called for is to ensure that albinism is treated as a public health issue. Given the medical and also political issues facing persons with albinism, having an effective government-based program that provides medical support, along with protections against those who may be threatening the individuals with albinism.
There exist great examples of such public health programs related to albinism that include a program in Tanzania, where the country “runs a mobile skin care clinic where a doctor and a nurse regularly visit villages to check the skin of people with albinism and provide education on protection from UV exposure” (Hong, Zeeb, & Repacholi, 2006).
Hong, Zeeb, & Repacholi (2006) offer a number of recommendations for an effective public health program related to persons with albinism. They call for various actions such as:
Conduct research/surveys to determine the prevalence of albinism in the country
Based on research information, develop appropriate strategies for assisting people with albinism that include the following:Integrate albinism awareness in the school curricula, especially to correct misconceptions about the etiology of albinism
Educate counsellors in schools about albinism
Train health care providers at clinics and hospitals about albinism and the effects that UV exposure can have on this condition
Encourage community self-help support groups
Implement programmes to aid people with albinism in finding indoor occupations
Activists continue to find other ways to promote the human rights of people with albinism. For example, in 2014, activists began dedicating a day for International Albinism Awareness (UN, 2015).
It is important that government take this issue seriously, and that the courts do so as well. Unjust criminal sentences for heinous crimes is part of the problem. It is also imperative that community members also work to help protect people with albinism (UN, 2016). Moreover, it is also important to challenge the ideas posed by some with regards to the healing effects of body parts.
Ager, S. (2015). Awareness Day Seeks to End Abuses Against Albinos. National Geographic. June 13, 2015. Available Online: http://news.nationalgeographic.com/2015/06/150613-albino-awareness-day-africa-pictures-discrimination-violence/
Amnesty International (2016). Malawi: Killing spree of people with albinism fueled by ritual. Amnesty International Media Centre. 07 June 2016. Available Online: http://www.amnestymedia.org/story.asp?ID=DWYSV&title=Malawi__Killing_spree_of_people_with_albinism_fuelled_by_ritual&language=ENG
Hong, E.S., Zeeb, H. & Repacholi, M.H. (2006). Albinism in Africa as a public health issue. BMC Public Health. 17 August 2006. Available Online: http://bmcpublichealth.biomedcentral.com/articles/10.1186/1471-2458-6-212
Human Rights Council (2013). A/HRC/RES/23/13. Agenda Item 3. United Nations General Assembly: Human Rights Council. Available Online: http://www.un.org/en/ga/search/view_doc.asp?symbol=A/HRC/RES/23/13
Time (2016). Albino People are Being Killed for Their Body Parts in Malawi. Time. June 7, 2016. Available Online: https://www.yahoo.com/news/albino-people-being-killed-body-151507968.html
Under the Same Sun (2010). April 10 Pew Research study on religion and witchcraft in Tanzania. Available Online: http://www.underthesamesun.com/sites/default/files/Pew%20Research%20study%20on%20religion%20and%20witchcraft%20in%20Tanzania.pdf
United Nations (2015). Urgent appeal by UN expert to stop ‘abhorrent’ attacks against persons with albinism. United Nations News Centre. 15 October 2015. Available Online: http://www.un.org/apps/news/story.asp?NewsID=52272#.V1cucEt8Ng0
United Nations (2016). In Malawi, people with albinism face ‘total-extinction’–UN rights expert. UN News Centre. 29 April 2016. Available Online: http://www.un.org/apps/news/story.asp?NewsID=53820#.V1dKHUt8Ng0
United Nations Office for the High Commissioner of Human Rights (ND). Human Rights Dimension of Albinism–People with albinism. United Nations Office for the High Commissioner of Human Rights. Available Online: http://albinism.ohchr.org/human-rights-dimension-of-albinism.html
United Nations Office for the High Commissioner of Human Rights (2015). “They value their body parts more than their life” – Urgent appeal to stop attacks against persons with albinism. October 15th, 2015. Available Online: http://www.ohchr.org/EN/NewsEvents/Pages/DisplayNews.aspx?NewsID=16605&LangID=E