AfricaFiles
Title: Fighting albinism's stereotypes
Author: Rutendo Mawere
Category: Zimbabwe
Date: 10/31/2014
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African Charter Article# 19: All peoples shall be equal in respect and rights without domination by others.
Summary & Comment: Albinism is an unfortunate genetic disorder affecting thousands of people in Africa. Rutendo Mawere examines the daily challenges facing people with albinism in Zimbabwe, and the dangerous myths and stereotypes that are widespread across Africa. What needs to be done to ensure albinism is recognized as being a medical condition and not a curse?
"Many people avoid mere physical contact with me. A greeting is something my schoolmates and even the community cannot stomach except for a few who are informed. All because of my Albinism."
"That stigma exists, has always existed, and it will continue existing. It is as if it's being passed from generation to generation. That is the sickening side of society where information is either lacking or absent about Albinism, that it's neither a curse, a plague, a disease. We do not deserve to be quarantined by our own society," said Cephas Doma, a person living with albinism. He has endured endless discrimination at the hands of a society that knows very little about albinism.
"Mine is a double tragedy because besides living with albinism, I found out that I am also HIV positive. I was angry when I discovered that and had so many questions but I could not get answers as both my parents had died," Doma said. "At school and in the community some people ridiculed me, but I have learnt to love myself because this is how God created me." Doma narrates the suffering associated with many albino children in the Zimbabwe-produced documentary Enhancing public awareness: Knowledge and acceptance of people living with Albinism.
Africa is the worst place to be an albino. Because African albinos are especially noticeable, it is difficult for them to enjoy normal life. Marginalization becomes a staple for people living with the condition. Lund (2001) acknowledges that in Africa persons with albinism face a myriad of challenges that can be broadly classified into health and social categories. This means that most people living with Albinism generally share the same challenges ranging from skin damage, vision problems, increased risks of cancer, access to sunscreen, discrimination, access to education, ridicule, and stigma associated with their condition. Some of these challenges have to do with the fragility of the skin that makes it vulnerable to sun damage and cancer. Others have to do with myths surrounding albinism, the difference in skin colour and the consequent discrimination that leads to their marginalization.
What is albinism?
Albinism is an inherited genetic disorder in which the body fails to produce enough melanin, the pigment that is responsible for giving skin, hair and eyes their colour. A lack in melanin can lead to many serious health conditions of the skin such as lesions and skin cancer (Lund 2001).
Skin cancer is a serious health risk for persons with albinism (Lund, 2001). Unprotected exposure to ultraviolet rays damages the skin, resulting in skin cancer that is often fatal. The Zimbabwe Albino Association (ZIMAS) states that most of their members die of skin cancer. "An indicative mortality rate from the disease can be deduced from the fact that ZIMAS has lost an average of 15 people (known cases) every year due to skin cancer in the past ten years. All these people were below 35 years," Persons with albinism in Zimbabwe and Southern Africa generally do not live beyond age 30 due to skin cancer.
Apart from skin-related health concerns, persons with albinism are more likely to suffer from a range of eyesight problems like photophobia- a condition in which bright light hurts the eyes, and short-sightedness. According to McBride (2002), the low vision disability is caused by uncontrolled light coming into the iris which is hypo-pigmented.
In terms of prevalence, Lund writes, "Oculocutaneous (OCA) albinism is commonly found in sub-Saharan Africa; about 1: 4 182 indigenous Zimbabweans show this form of albinism (Lund, 1996), compared with 1: 37 000 in the US." In Tanzania, and throughout East Africa, albinism is much more prevalent, with estimates of 1 in 1,400 people being affected according to 'Under The Same Sun' a Christian organization that promotes the wellbeing of persons with albinism via education and advocacy.
In a social context, a person with albinism has pale skin, white or sand-coloured hair, and light brown or even blue eyes. This makes them strangely different from those with black skin in Southern, East and Western Africa. Lund said, "It is this totally different appearance which gives rise to stigmatization and marginalization in all areas of social activity including basic health care, especially in Africa." The United Nations officially declared albinos "persons with disabilities" in 2008.
A dangerous life: Myths and maltreatment
Myths about albinism on the continent range from wild to terrifying. Some African countries are worse than others in terms of their treatment of people living with Albinism. Albinism is believed to be contagious so people are afraid to touch people with the disorder. Some believe albinism is the result of a curse from the spirits on the family with a member with such a condition, so it is thought to be unwise to associate with such a family. And yet, in other places mixtures of Albino body parts are thought to bring good luck and prosperity.
Pregnant women are discouraged from looking at people living with albinism as the belief is they will give birth to a child with albinism. Others believe that people with albinism do not die, they disappear. In some cases, infanticide is committed as children born with the condition are killed.
In Kenya some of those living with HIV/AIDS also believe that having sex with someone living with Albinism cures HIV/AIDS. This has led to an increased number of people living with albinism being raped and infected. The government has made it a criminal offense to knowingly infect someone with the virus. Rape cases however drag on in the courts.
Even those who are brave enough to have attained some education; their lives are hampered by the everyday abuse they receive. It is the derogatory names that cause most albinos to stay indoors and therefore remain excluded from real social, economic, cultural and political progress. Derogatory name-calling is common in Africa. Albinos are called murungudunu (fake white people), inkawu (monkey) and nunu (monster).
Albinism in Zimbabwe: Some progress but challenges remain
While there are no official statistics of people living with albinism ZIMAS estimates that 15,000 have the condition in Zimbabwe. The albino community in Zimbabwe argues the government still has more to do to lessen their plight. Like other albinos elsewhere in Africa, this community is not spared the marginalization, rejection, and ridicule associated with the many myths and beliefs of others, that threaten them.
Over time, ZIMAS managed to lobby for inclusion in these umbrella movements. The new Zimbabwean constitution adopted in 2013 states that "the State and all institutions and agencies of government at every level must recognise the rights of persons with physical or mental disabilities, in particular the right to be treated with respect and dignity."
However while section 22(2) says the state and government agencies should assist persons with disabilities in achieving their full potential and minimize the disadvantages suffered by them, the same section dilutes these rights by saying the state will do this within the limits of the resources available to them.
While Zimbabwe has now officially accepted albinism as a disability covered by the provisions of the Disabled Persons Act, ZIMAS says the government has failed to provide, among other things:
. Free sunscreen medication as they do art therapy for those living with HIV/AIDS
. Accessible and affordable health care for people with skin cancer
. Early skin cancer detection facilities and services
. Affordable or free glasses
. Assistance for educational campaigns.
Richard Nyathi the chairperson of ZIMAS said some of those living with albinism have faced discrimination and abuse all their lives. "They are often regarded as 'unnatural' and even 'cursed'. This has led to most people living with Albinism failing to economically advance because most cannot access proper education while other companies refuse to employ such people." Discrimination in hiring is a crime, though very difficult to prove. People with albinism also struggle to find employment as employers fear they will scare their clients.
In Zimbabwe, a country struggling with a deep recession, unemployment and economic meltdown, the price of sunscreen for albinos is beyond the reach of most of the population. A bottle of sunscreen lotion sells for about US$10, while average monthly salaries are around $150.
ZIMAS has appealed to the government to increase the time set for writing examinations for children living with albinism, as is the trend world over, as their short-sightedness makes them slower than their able-bodied mates. Harare has not yet made a decision on this.
Makumbe noted that women living with albinism face even greater challenges. Most families are not willing to have a daughter-in-law that has this condition. Women also suffer a lot for birthing children with albinism. Nyathi says 1:10 women are divorced for giving birth to a child with albinism. "Women who give birth to children with albinism face the same discriminatory challenges and most of our members are divorced for giving birth to children with albinism." Women who give birth to children are also suspected of having committed a sin like cheating on their husbands. This is more common in rural setups than in the urban areas. ZIMAS states that those of poorer backgrounds have problems in securing lodgings because property owners do not want people living with Albinism on their premises.
Main opposition leader Morgan Tsvangirai, the former Prime Minister of Zimbabwe, has repeatedly said that the country has enough resources to respond to the needs of those living with albinism. "Government must ensure that persons living with albinism have the same opportunities as everyone else and that they are treated with the same dignity as guaranteed by the Constitution of Zimbabwe. Social safety nets are important in any country. They say a nation can be judged by the way it treats its most vulnerable citizens." Tsvangirai, who is the Goodwill Ambassador for the Southern African Federation of the Disabled has said he will champion publicly and privately the rights and interests of people who are often ostracized by society.
What people living with albinism are doing to remove the victim tag?
There are rays of hope for albinos in Zimbabwe. Media has extensively been used by the association for educational purposes. In addition, group and individual counselling has been conducted. Children with albinism from poor or ill-informed families have been helped to attend school by obtaining donor funding and/or government support through the Basic Education Assistance Module, a fund in Zimbabwe that assists orphans and vulnerable children with fees.
ZIMAS has procured and distributed sunscreen and floppy hats to its membership since 1996. In addition, it has facilitated the provision of glasses to school children. Whenever it could get funding for its educational campaigns, ZIMAS has distributed flyers on less costly skin cancer prevention strategies. These include wearing long-sleeved clothes, floppy hats and footwear. The association has also informed its membership of the times of day it is most risky to be in the sun, i.e., between 10:00 am and 3:00 pm.
In Bulawayo, Zimbabwe's second-largest city, ZIMAS has acquired funding to build offices and a chicken run at its leased stand in Old Lobengula to breed chickens as a fundraising venture. The fowl run, which has the capacity to produce 1,500 chickens, and offices have been completed. ZIMAS plans to buy sunscreen for its members with the funds and eventually build a skin care centre.
The University of Zimbabwe has been at the forefront of championing the rights of people living with albinism. Though a semester usually costs between US$700 and 1,200, the university provides free education for people with the disorder.
How Africa can reduce marginalization of people with albinism
Probably the most well-known example of a person with albinism overcoming the barriers connected with the condition is that of Salif Keita- a successful afro-pop singer and songwriter from Mali, West Africa. The 'Golden Voice of Africa', was once rejected and ostracized by his family because of his albinism and was regarded as a curse, despite being a direct descendant of the Malian emperor.
He is an exception. A report by the World Health Organization, Albinism as a Public Health Issue (2006), revealed that persons with albinism in Africa were deprived of basic health services vital for their survival. The key recommendations outlined in the study were that individual states should conduct surveys to determine the prevalence of albinism. States should also 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 aetiology 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.
Albinism has to be recognized as being a medical condition and not a curse. African countries also need to train their health care staff to deliver albino children the same way they do black-pigmented children and offer counselling services to couples who deliver such children. There has been some tendency by nurses to call all staff available to see the "unnatural" child when such a delivery occurs.
African countries need to respond to the needs of their people living with albinism by providing free skin lotions and subsidized or free glasses. Governments should also increase public awareness of the condition and listen and respond to the concerns of organizations representing people living with albinism. Stigmatization has reduced, especially in urban areas but more needs to be done to educate the public at large about the true nature of albinism to ensure that those living with Albinism are not discriminated against and marginalized.
Rutendo Mawere is a Zimbabwean media and human rights activist. she has worked as a local, international and regional journalist. She hopes her writing brings change to communities. She can be reached at ruruem(@)gmail.com
References
Braathen S.H., Ingstad, B (2006) Albinism in Malawi: knowledge and beliefs from an African setting-Disability & society. Taylor & Francis.
Baker, C., Lund, P.M, Nyathi, R. and Taylor, J. (2010) The myths surrounding people with albinism in South Africa and Zimbabwe. Journal of African Cultural, Taylor & Francis.
Cruz-Inigo, A.E., Ladizinski,B. Sethi, A. (2011) Albinism in Africa: stigma, slaughter and awareness campaigns, Dermatologic clinics. Elsevier.
Hong, E.S., Zeeb, H., Repacholi, M.H.(2006) Albinism in Africa as a public health issue. BMC Public Health.
IRIN News Service, (2006) Too white to be black - the challenge of albinism.
Personal correspondence with Gabriella Moyo, 2014.
Personal correspondence with Richard Nyathi, Chairperson of ZIMAS. 2014.
Lund,P.M. (2001) Health and education of children with albinism in Zimbabwe, Health Education Research. Oxford Univ Press.
Lund,P.M. (2005) Oculocutaneous albinism in southern Africa: Population structure, health and genetic care. Oxford Univ Press.
McBride, S. and Leppard, B. (2002) Attitudes and beliefs of an albino population toward sun avoidance: advice and services provided by an outreach albino clinic in Tanzania. PubMed.org
Tsvangirai, M. (2013) Tsvangirai meets members of the Zimbabwe Albino Association. Nehanda Radio, 13th June, 2013.
World Health Organization (2006) Albinism as a Public Health Issue
Disclaimer: Opinions expressed in this article are those of the writer(s) and do not necessarily reflect the views of the AfricaFiles' editors and network members. They are included in our material as a reflection of a diversity of views and a variety of issues. Material written specifically for AfricaFiles may be edited for length, clarity or inaccuracies.
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