By Namugerwa Martha
Peter Ogik, one of the founders and Chairperson of the Source of the Nile Union of Persons with Albinism (SNUPA) once said that his life became harder when he started school. Ogik recalls, while at school fellow children would mock him saying that he is a result of a curse. This kind of presumption used to hurt him although he excelled academically.
Ogik who trekked 12 kilometers to school regardless of too much sunshine which could have caused him skin cancer, says on his way to school, people would call him names while his schoolmates would shun him because he looked different from them.
While having a one on one with Ogik, he told me that it is the same case to many persons with albinism; some walking long distances under sunshine to access water facilities which are also normally located very far from people’s settlements.
In most cases, this kind of exposure increases their risks to diseases and other dangers associated to the congenital disorder.
He added that Children with albinism face a lot of challenges while in pursuit of accessing safe water. Notably on top of walking long distances to acquire water from wells, water is also usually contaminated; many water animals breed in those wells which expose them to great danger in case they step in the contaminated water since they lack the melanin substance, their skin cracks causing them wounds which sometimes leads to skin cancer.
On the other hand, people with albinism in search for safe water are exposed to numerous risks like rape due to the existing myths like if you have unprotected sex with an albino you are cured of diseases like HIV. Worse still, rape exposes albinos to early pregnancies and HIV/AIDS.
“Our skins are not friendly to sun shine whereas fetching or acquiring safe water here in villages for example from bore holes you need to walk a long distance and in some communities people are not friendly to people with our condition which makes it hard for many of us to get water even if you are able to go to the water sources,” Ogik added.
He added that their hygiene and access to sanitation facilities is also hard due to the discriminatory traits against them.
Interviewing a child living with albinism from Jinja district called Sarah (real name withheld) who was raped while on her way to the well (located very far from where she lives with her parents), she made it clear that at school it is even worse due to much bullying and self low esteem.
Sarah says that many of the children living with albinism cannot be able to acquire good sanitary education especially girls from the eastern part of the country mostly in villages since many are discriminated and stigmatized by their parents and community’s behavior towards their condition and this sometimes forces them not to be open towards their parents and teachers when it comes to learning about good sanitation and proper hygiene.
“Many schools in villages like ours have only one latrine which is also in poor conditions but used by both teachers and students then how can they afford to provide clean and safe water to us and other students?” Sarah inquired.
“I remember that whenever I had money for breakfast at school, I would give it away, thinking that this would make them my friends. I’d also help them in school when they were struggling by answering questions for them, the blackboards were old and faint, which meant that i couldn’t see clearly what was written on the board. But the teachers never bothered to move me to the front seats of the classroom,” Ogik said.
Ogik is now one of the founders of Source of the Nile Union of Persons with Albinism, a non-profit organization in Jinja, Uganda, which advocates for human rights and access to quality services for people with albinism.
Ogik whose birth he says was a shock for his parents, wants people in WASH sector to carry out specific programs of inclusion addressed to people with albinism conditions.
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.
The most common and most severe type in sub-Saharan Africa is ocular albinism which gives people white hair, pink skin, low vision or blindness and a greater susceptibility to skin cancer.
People with albinism especially women and children, continue to suffer with violence, discrimination, stigma and social exclusion which normally forces people to deny them their rights and they also reluctantly fail to demand for them.
Fazira Kawuma, the deputy speaker of Jinja district local government and one of the co-founders of SNUPA said that many children and people living with albinism not only face discrimination but also water facilities and wells don’t have shades for people in that condition to rest or stand since the sun is not friendly to their skin.
“Looking for good social life such as safe water, proper hygiene and probably love comes with a lot of price to persons with albinism because many children are raped, infected with HIV and even impregnated because of the long distances they have to trek in pursuit of clean and safe water which normally increases early pregnancies and child marriages,” Kawuma said.
Many are marginalized in their communities and experience social exclusion caused by the misunderstanding, entrenched prejudices and stereotyping due to their skin color and traditional myths that they are cursed people or bring bad omens to the society.
In a country where access to clean water even to normal people in society is a problem, it is even worse for minorities such as people living with albinism. We went about asking, “Do people with albinism get access to safe water, good sanitation or good health services?”
Discrimination and segregation has kept people with albinism at the edge. It’s tough for albinos to go fetching water from public water sources like boreholes, taps or wells because they are stigmatized, on top of being disadvantaged for not being able to keep under the sun for too long and their eye problems.
Being that regardless of skin color, tribe, disability and gender are entitled to safe water; people with albinism are forced to walk at night or early mornings because of the need to take extra care of their skin, which exposes them even to more dangers.
Without melanin, ultraviolet (UV) rays in sunlight can easily damage their skin (sunburn) and increase their risk of developing skin cancer and severe visual impairment.
While at the International Albinism Awareness Day in Kampala the executive director of the African Albino Foundation Uganda (AAFU) Olive Namutebi, said that albinos are struggling to fit in a society with a lot of discrimination and superstitious thinking towards them which hinders them from associating with people with normal skin color.
“Protection from the rays of the sun is the best health care for albinos, but the sunscreens are very expensive for us and many cannot afford. We urge government to de-classify these products from the general cosmetics lists,” Namutebi said.
However, the UN Independent Expert on human rights of persons with albinism, Ikponwosa Ero said that people with albinism also face significant barriers restricting their equal participation in society, impacting their rights to enjoy physical and mental health and their ability to access adequate health care, education, social services, legal protection, and redress for abuses.
“It is essential for us to be bold and untiring in our determination to see all people with albinism enjoy their full human rights,” said Ms. Ero.
In tropical countries, people with albinism who do not have access to adequate skin protection develop life-threatening skin cancers. If they use appropriate skin protection, such as sunscreens rated 20 SPF or higher and opaque clothing, people with albinism can enjoy outdoor activities even in summer however the sunscreens and skin protections are very expensive for some of them who are living in poor conditions or villages therefore walking in sunshine is a total risk even if they are thirsty or hungry in order to look for good and safe water.
Children with albinism need regular eye tests and it is likely they will need to wear glasses or contact lenses to correct vision problems such as short-sightedness, long-sightedness or astigmatism which also affects their education and associating with fellow children at school.
Children being the most vulnerable, are normally denied proper sanitation and safe water by their parents, teachers and children while at school due to discrimination which most cases makes them unable or uncomfortable to enjoy their rights as other children or students whom they go to school with.
A voice for people with albinism
International and regional human rights mechanisms had addressed the needs of persons with albinism, since June 2013, because of the recrudescence of attacks against them.
The United Nations Human Rights Council and the African Commission on Human and Peoples’ Rights adopted resolutions (HRC resolutions 23/13, 24/33 and 26/10, ACHPR resolution 263) in 2013 and 2014 calling for the prevention of attacks and discrimination against persons with albinism. On 18 December 2014, the General Assembly adopted resolution 69/170, proclaiming, with effect from 2015, 13 June as International Albinism Awareness Day.
Moreover, in response to the call from civil society organizations to consider persons with albinism as a specific group with particular needs that require special attention, on 26 Mars 2015, the United Nations Human Rights Council adopted resolution 28/L.10 creating the mandate of Independent Expert on the enjoyment of human rights of persons with albinism.
In creating the mandate, the Council reaffirmed that everyone has the right to life, liberty and security of person and that no one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment. It also recalled the universality, indivisibility, interdependence and interrelatedness of all human rights and fundamental freedoms and the need for persons with albinism to be guaranteed the full enjoyment of their rights and freedoms without discrimination.
In June 2015, the Human Rights Council appointed Ms. Ikponwosa Ero of Nigeria as the first Independent Expert on the enjoyment of human rights by persons with albinism.