News & Media

People with albinism need urgent protection

South Africans living with albinism are among the most marginalised and vulnerable citizens, yet very little attention is paid to protecting them from human rights violations, threats and violent crime, says Unisa researcher Maureen Mswela.

Shutterstock: Unidentified albino mother and son on July 2, 2015 in Ukerewe, Tanzania“People with albinism live in a high state of insecurity that requires immediate attention,” says Mswela, a senior lecturer in the College of Law and one of very few researchers in the country to have investigated the many legal issues relating to persons living with albinism.

Violent crime targeting South Africans with the condition has not reached the levels encountered in Burundi, the Democratic Republic of Congo, and Tanzania, where 169 albino people have reportedly been murdered for their bones and body parts in the past few years.

Maureen MswelaHowever, Mswela notes a “surge” in violent crime against South Africans living with albinism, including the grisly murder of a 20-year-old woman for muti at Scabazini, Umhlabuyalingana, in far northern KwaZulu-Natal. In September 2015, the Vryheid Regional Court found two 19-year-old men guilty of murdering the woman and burying her mutilated body in a shallow grave.

In the belief that albino body parts have extraordinary powers, unscrupulous dealers have resorted to harvesting their body parts with the expectation that these will help them become rich, says Mswela.

“I read with a heavy heart of the recent kidnapping of yet another child with albinism.”  As recently as 28 June 2016, a four-year-old boy was reportedly kidnapped in Empangeni, KwaZulu-Natal, sparking uproar as the community expressed their anger over the alleged kidnapping. “This new wave of evidence is indicative of the rise in violent crimes among persons with albinism in South Africa,” says Mswela.

Government should work on a strategy for safety measures for people with albinism

“The mysterious killing of albinos causes uneasiness among the albino community, as they feel very insecure under these circumstances. The state of insecurity among persons with albinism requires immediate attention before it spirals out of control. If the lives of persons with albinism are to receive substantive meaning, the government must provide a safe and secure environment for this vulnerable group of people,” she says.

“I call on the Minister of Safety and Security to appoint a task team to work on a strategy for safety measures for people with albinism, the purpose being to stop the rising spread of violence against them,” she says. “As a complementary strategy, the general public needs to be involved in identifying and implementing community-oriented safety measures for people with albinism.”

The myriad of difficulties South Africans with albinism face make them a very vulnerable group in need of greater protection, says Mswela. “If South Africa can have a national strategy for the rhino species, necessitated by the increased incidence of rhino poaching, we can surely adopt a similar approach to protect the most vulnerable of the human species.”

Dangerous myths and stereotypes

Myths and stereotypes about albinism abound, she says. “For example, there is the myth that albino children are the result of racial mixing, and the myth that albinism is very contagious.  Dangerous myths and stereotypes associated with albinism in South Africa place individuals with this condition in a very vulnerable position.”

These beliefs and superstitions clearly illustrate ignorance of what albinism is: a medical condition, an extremely rare group of diseases and pigmentational variance in the skin, hair and/or eyes owing to hereditarily blocked melanin synthesis.

The association of film stereotypes about the “evil albino”, on top of existing cultural beliefs, myths and superstitions about albinos, reinforces pre-existing differences, generating the creation as well as re-creation of unbalanced relations with this group of people.

“The result is that, albinos may internalise the harmful reactions that are generated by ignorance, cultural beliefs and myths,” Mswela says. “Self-stigmatisation concludes the vicious cycle created by this prejudice, because its primary consequence is that it impinges on an individual’s or affected community’s self-esteem and worth, leading to feelings of shame, self-blame and worthlessness, self-imposed withdrawal, as well as isolation from society as a whole.”

Health challenges

Over and above the threat or fear of violence, stigmatisation and discrimination, people with albinism have many other human rights concerns, says Mswela, who recently completed her doctorate on selected legal issues relating to persons living with albinism and has since continued her research as part of the Unisa College of Law’s flagship (community engagement) project on Biotechnology and Medical Law.

Mswela notes that the Cancer Association of South Africa (CANSA) has acknowledged that persons with albinism face the highest risk of developing skin cancer. “While information concerning their susceptibility to cancer is very important, CANSA observed that such information is communicated to persons with albinism at a very late stage, especially those living in rural areas of South Africa.”

Interviews with the Chairperson of the Albinism Society of South Africa have revealed that the national health system has failed to adequately consider and take into account the healthcare needs of persons living with albinism. Very few have access to sunglasses with a high UV protection screen to relieve light sensitivity, or to preventative services such as dermatological skin checks, eye checks and eye corrections.

“Discrimination against persons living with albinism impedes their right of access to healthcare services, and the government should adopt a comprehensive approach to ensuring that healthcare services specifically cater for the unique needs of this group of people.”

Abusive language and derogatory name-calling

Deep concern exists about abusive language and derogatory name-calling directed at albino learners in schools, and intervention is needed in this regard.

“Where such name-calling occurs, mechanisms should be instituted to address the problem. Learners with albinism who are subjected to this form of prejudice should be encouraged to report it to the appropriate persons so that steps can be taken against those learners who single them out for abuse,” she says. “Discrimination and classification difficulties become evident when people use colour to group as well as label people. Discrimination on the basis of albinism has generally been overlooked in South Africa. A consideration of how to effectively protect persons with albinism against colour discrimination in South Africa is therefore indispensable.”

Raising awareness on albinism

As part of the Unisa College of Law’s flagship on Biotechnology and Medical Law, Mswela has initiated the “albinism awareness campaign” with the view that awareness and educational campaigns are required to bring an end to superstitious beliefs, discrimination and stigma.

In 2013, in collaboration with the Albinism Society of South Africa, she organised a successful seminar on raising awareness on albinism. The seminar provided a forum for persons living with albinism, academics within the legal field, geneticists and health professionals to discuss the challenges facing people with albinism in South Africa. This seminar resulted in the publication of peer-reviewed articles that tackle issues facing people with albinism in South Africa.

“It is a daunting task to filter out all illogical and dehumanising elements in cultural backgrounds and belief systems,” she says. “A substantial education campaign aimed at behaviour change is needed to address society’s lack of knowledge and to eradicate the common myths that being an albino is a curse and that the body parts of persons with albinism have the power to bring wealth.”

With funding support from the Biotechnology and Medical Law Flagship, Mswela has undertaken to engage in formal and informal educational awareness campaigns aimed at reaching a broad spectrum of South African society. “The successful transformation of minds rests on the acknowledgement that persons living with albinism are part of the human family.”

Save