“Not ghosts, but human beings… persons with albinism”

“Not ghosts, but human beings… persons with albinism”

GENEVA (4 May 2013) – “They are regarded as ghosts and not human beings who can be wiped off the global map. They are people living with albinism*, the target of many false and harmful myths in several countries, especially in the African region,” a group of United Nations human rights experts said today to mark Tanzania’s National Albinism Day.

In several African countries, it is believed that body parts of persons with albinism possess magical powers capable of bringing riches if used in potions produced by local witchdoctors. Some even believe that the witchcraft is more powerful if the victim screams during the amputation, so body parts are often cut from live victims.

NGOs working on albinism have documented 186 ritual attacks against people with albinism since 2000. Abductions and killings were recorded in 15 African states.

“These are manifestations of the worst forms of cruel, inhuman or degrading treatment and can never be justified,” the UN Special Rapporteur on torture, Juan E. Méndez said. “Under international human rights law it is the duty of the State to afford protection to persons with albinism against such barbaric acts.”

“I urge all relevant authorities to prevent and investigate such attacks immediately and bring perpetrators to justice while providing all necessary counseling services to the victims and their families,” he said.

People with albinism are not only brutally mutilated and tortured, but also killed and often buried alive together with tribal chiefs so as not to leave them in the grave alone. “These acts must be stopped and the perpetrators must be brought to justice without delay,” stressed the UN Special Rapporteur on extrajudicial, summary or arbitrary executions, Christof Heyns.

“States bear full responsibility to undertake thorough, prompt and impartial investigations of all killings of persons with albinism, as well as to adopt the necessary measures to bring an end to impunity and prevent the recurrence of such killings,” he added.

One of the major challenges for people living with albinism is that they are often rejected and abandoned by their own families under the societies’ pressure, noted the UN Independent Expert on minority issues, Rita Izsák.

“People living with albinism do not fall under the internationally accepted definition of minorities,” she said. “However, their stigma, the lifelong social exclusion and general discrimination they face is a similar experience to those vulnerable racial minorities because of their different skin colour.”

“Regardless of whether one has a lighter or a darker skin compared to the majority population in a country or a community, everyone is entitled to the same rights, dignity and treatment”, the UN Special Rapporteur on racism, Mutuma Ruteree added. “It must be ensured that people living with albinism enjoy their human rights without distinction and have the same opportunities as anyone else.”

Most persons with albinism are visually impaired. They may have a shortened life span by lung disease or may develop life-threatening skin cancers. “People living with albinism often do not receive the necessary special attention, health care or treatment that corresponds to their health needs,” the UN Special Rapporteur on the right health, Anand Grover, noted.

“I urge all relevant authorities to assess the needs of people living with albinism to increase their life chances and ensure their enjoyment of the right to physical and mental health,” he said.

The UN Special Rapporteur on the right to education, Kishore Singh noted that “there are now several educational methodologies and guides to teachers that have proved efficient in the course of educating children with albinism. These must be widely promoted and applied.”

“Easy tools like re-organizing the classroom so children with albinism sit in the front or shifting to larger prints can bring significant improvement and reduce drop-out rate,” Mr. Singh said.

The experts urged UN bodies such as Office of the High Commissioner for Human Rights to study the root causes of discrimination and attacks on persons with albinism, and call on world governments to raise awareness and educate the public at large about the true nature of albinism and the needs of people living with albinism.

“Dedicated national days, such as it exists in Tanzania can provide a great opportunity to trigger more attention to and launch discussion on the plight and needs of people living with albinism,” the human rights experts said. “They are not ghosts; they are simply persons like you and us, but living with albinism.”

(*) Albinism is a rare, non-contagious, genetically inherited condition occurring in both genders regardless of ethnicity, in all countries of the world. It can happen to anyone if both father and mother carry the gene for it to be passed on even if they do not have albinism themselves. While numbers vary, in North America and Europe it is estimated that 1 in every 20,000 people have some form of albinism. In Tanzania, and throughout East Africa, albinism is much more prevalent, with estimates of 1 in 2,000 people being affected. Albinism results in a lack of pigmentation in the hair, skin and eyes, causing vulnerability to sun exposure and bright light. Almost all people with albinism are visually impaired; they may have a shortened life span by lung disease or may develop life-threatening skin cancers.

ENDS

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