'Do Anything You Want in Your Uniqueness': How Africa's Albinism Activists Tackle Bias
16:33 13.06.2023 (Updated: 10:49 03.08.2023)
© Photo Sixmond Mdeka
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On June 13, the world observes International Albinism Awareness Day, a day to celebrate the human rights of persons with albinism and to combat the discrimination, stigma and violence they face. Established by the United Nations in 2014, this year's Albinism Day is celebrated under the theme "Inclusion is Strength."
Albinism is a rare genetic condition that affects the production of melanin, the pigment that gives color to the skin, hair and eyes. People with albinism have little or no melanin, which makes them more vulnerable to sun damage, visual impairment and skin cancer. They also face social challenges, such as bullying, exclusion, stereotypes and myths that can lead to violence and persecution.
According to the United Nations, albinism affects approximately 1 in 17,000 to 20,000 people in North America and Europe. However, it is much more common in sub-Saharan Africa, particularly in Tanzania, where it affects 1 in 1,400 people. In addition, prevalence rates as high as 1 in 1,000 have been reported in selected populations in Zimbabwe and in other specific ethnic groups in the southern region of Africa.
Due to their lack of melanin, people with albinism have a high risk of developing and sometimes dying from skin cancer between the ages of 30 and 40, which is preventable with regular health check-ups and access to sunscreen, sunglasses and sun-protective clothing. Unfortunately, these life-saving resources are not available to everyone, and people with albinism are often left behind in development efforts.
To mark this day, Sputnik Africa spoke with Sixmond Mdeka, a Tanzanian gospel reggae singer, preacher of the Word of God and social advocate on disability and albinism awareness.
Sixmond has albinism himself and has overcome many obstacles in his life to become a successful artist and activist. He shared with us his personal story, his challenges, his achievements and his hopes for the future.
He was born to a family of six children, all of whom inherited albinism from their parents, who also had the condition and died of skin cancer. Likewise, he was raised by his uncle, who took care of him and his siblings after their parents' death. Sixmond realized he was different from other children when he was five years old, because he was called many bad names that stressed his difference.
"I was treated differently during my childhood, including being called names and being bullied, deprived of the basic right to education like other children."
He faced many challenges at school, where he struggled to see the board and the books, and where many teachers were not friendly or supportive. He also faced discrimination and rejection from some relatives and neighbors who believed in superstitions about albinism.
Despite his success and popularity, Sixmond has not been immune to the threats and violence that many people with albinism face in some parts of Africa. He has had several close encounters with danger in his life.
Sixmond Mdeka, a Tanzanian gospel reggae singer, preacher of the Word of God, and social advocate for disability and albinism awareness, preaches at the Evangelistic Assemblies of God Church in Dar es Salaam, Tanzania, on May 16, 2023.
© Photo Sixmond Mdeka
In 2003, he was attacked by a gang of five robbers who had machetes and wanted to rob him. He managed to fight back using his martial arts skills and escaped. He has also been harassed by strangers who have thrown dirty oil or spit on him.
The Tanzanian has also faced discrimination in other aspects of his life, such as finding a job. He says that many employers do not trust people with albinism or think they are incapable of working.
"There are several organizations that try to put the efforts to help people with albinism find their place in the community, but they are not very focused on psychological problems."
According to Sixmond, people with albinism face various long-term psychological effects, including low self-esteem and stigmatization not only within their families but also in society at large. This often stems from their lack of basic education and social inclusion, which deprives them of opportunities to engage and share their ideas or thoughts, let alone make decisions.
As a result, individuals with albinism tend to lack confidence, experience anxiety and fear, and feel marginalized from society, he said.
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© Photo Sixmond Mdeka
This photo was taken on January 1, 2022, in Ukerewe, where Sixmond Mdeka, a Tanzanian gospel reggae singer, preacher, and social advocate for disability and albinism awareness, organized a Christmas and New Year's party for marginalized groups, including people with albinism, the physically disabled, and the elderly, through his organization Disability Support Tanzania.
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© Photo Sixmond Mdeka
This photo was taken on January 1, 2022, in Ukerewe, where Sixmond Mdeka, a Tanzanian gospel reggae singer, preacher, and social advocate for disability and albinism awareness, organized a Christmas and New Year's party for marginalized groups, including people with albinism, the physically disabled, and the elderly, through his organization Disability Support Tanzania.
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© Photo Sixmond Mdeka
This photo was taken on January 1, 2022, in Ukerewe, where Sixmond Mdeka, a Tanzanian gospel reggae singer, preacher, and social advocate for disability and albinism awareness, organized a Christmas and New Year's party for marginalized groups, including people with albinism, the physically disabled, and the elderly, through his organization Disability Support Tanzania.
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© Photo Sixmond Mdeka
This photo was taken on January 1, 2022, in Ukerewe, where Sixmond Mdeka, a Tanzanian gospel reggae singer, preacher, and social advocate for disability and albinism awareness, organized a Christmas and New Year's party for marginalized groups, including people with albinism, the physically disabled, and the elderly, through his organization Disability Support Tanzania.
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© Photo Sixmond Mdeka
This photo was taken on January 1, 2022, in Ukerewe, where Sixmond Mdeka, a Tanzanian gospel reggae singer, preacher, and social advocate for disability and albinism awareness, organized a Christmas and New Year's party for marginalized groups, including people with albinism, the physically disabled, and the elderly, through his organization Disability Support Tanzania.
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© Photo Sixmond Mdeka
This photo was taken on January 1, 2022, in Ukerewe, where Sixmond Mdeka, a Tanzanian gospel reggae singer, preacher, and social advocate for disability and albinism awareness, organized a Christmas and New Year's party for marginalized groups, including people with albinism, the physically disabled, and the elderly, through his organization Disability Support Tanzania.
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© Photo Sixmond Mdeka
This photo was taken on January 1, 2022, in Ukerewe, where Sixmond Mdeka, a Tanzanian gospel reggae singer, preacher, and social advocate for disability and albinism awareness, organized a Christmas and New Year's party for marginalized groups, including people with albinism, the physically disabled, and the elderly, through his organization Disability Support Tanzania.
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© Photo Sixmond Mdeka
This photo was taken on January 1, 2022, in Ukerewe, where Sixmond Mdeka, a Tanzanian gospel reggae singer, preacher, and social advocate for disability and albinism awareness, organized a Christmas and New Year's party for marginalized groups, including people with albinism, the physically disabled, and the elderly, through his organization Disability Support Tanzania.
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© Photo Sixmond Mdeka
This photo was taken on January 1, 2022, in Ukerewe, where Sixmond Mdeka, a Tanzanian gospel reggae singer, preacher, and social advocate for disability and albinism awareness, organized a Christmas and New Year's party for marginalized groups, including people with albinism, the physically disabled, and the elderly, through his organization Disability Support Tanzania.
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© Photo Sixmond Mdeka
This photo was taken on January 1, 2022, in Ukerewe, where Sixmond Mdeka, a Tanzanian gospel reggae singer, preacher, and social advocate for disability and albinism awareness, organized a Christmas and New Year's party for marginalized groups, including people with albinism, the physically disabled, and the elderly, through his organization Disability Support Tanzania.
"A person with albinism should be recognized, addressed and called by his/her real name or called brother, sister or friend, if his/her name is not known to the one who wants to call him/her. It is also not worth calling him/her an albino," the preacher suggested.
Sixmond argued that historically, in African societies, individuals with albinism have been subject to significant cultural stigma. Being perceived as cursed, or even possessing magical powers, these individuals have often been devalued, stripped of their dignity and identity, and thought to have little worth.
"But, slowly the situation has begun to change because a person with albinism can do everything like anyone else and now there are many PWAs [people with albinism] who have taken part in almost all fields including politics, sports, music, law, etc.," he said.
To take a broader look at the experience of people with albinism, Sputnik Africa also spoke to Olive Namutebi, co-founder of the non-governmental organization Albinism Umbrella in Uganda.
Namutebi also has albinism, and although she was born and raised in a different African country, her childhood experiences were not much different from Sixmond's story.
"Being in school, yes, I was treated differently. Though, so to speak, in my lower primary, things were a bit tight. I was in a public school with a high number of students, and nobody really cared about the bullying of kids," she recalled. "I really tried my best to blend in."
She added that having albinism as a child "is really a big burden because, first of all, you don't know you are different and other kids keep trying to know the difference." Namutebi said she first realized she was different at the age of five, when she went "through a nasty experience of a big sunburn."
"In my country, it's not so easy to be different. So you have to blend in somehow," she suggested. "So psychologically, in the short term, sometimes you feel alone, you feel rejected, and in the long term, you tend to want to find solutions. Maybe I would want to find solutions to why I am different. So there is a psychological torture of rejection."
Namutebi added that there are a number of civil society organizations working to support people with albinism in African societies. These organizations, like her Albinism Umbrella and other NGOs and community-based groups, offer a range of services designed to meet the unique needs of people with albinism, including the distribution of medical supplies that are considered a "critical first line of defense against skin cancer.
Olive Namutebi, co-founder of the Albinism Umbrella NGO in Uganda and chair of the National Action Plan (NAP) Steering Committee, delivers a speech on the occasion of the International Albinism Awareness Day and the launch of the National Action Plan on Albinism in Uganda on June 23, 2022.
Moreover, according to the Ugandan activist, these organizations provide a sense of belonging and support to people with albinism who may otherwise feel marginalized or rejected by society. By building self-esteem and providing a space where people with albinism can connect with others who share their experiences, these organizations help combat the isolation and stigma that people with albinism often face.
"These organizations deal with the psychological impact by creating a platform where people engage. We tell our stories, we encourage each other. And that has been really great in a lot of people's lives. We have seen people who were drowning, who had very low self-esteem, even some who were thinking of suicide, but these organizations have been really helpful," Namutebi said.
It's worth noting that Albinism Umbrella spearheaded the domestication of the Regional Action Plan on Albinism in Africa, a five-year plan launched by the United Nations and the African Union for 2017-2021 to address attacks and related violations against persons with albinism in sub-Saharan Africa. Founded in 2016, Namutebi's NGO has been working with the country's Ministry of Gender, Labour and Social Development to advocate for and implement a national action plan on albinism in Uganda.
Olive Namutebi, co-founder of the non-governmental organization Albinism Umbrella in Uganda, in Phiona during a school awareness session.
© Photo Olive Namutebi
In the same vein, as a singer, preacher and social advocate for disability and albinism awareness, Sixmond uses his platform to speak out for the rights and dignity of people with albinism in Tanzania and to challenge the myths and stereotypes that fuel violence against them.
The Tanzanian said he works both through his organization Disability Support Tanzania and in cooperation with various organizations that support people with albinism, such as Standing Voice and Under The Same Sun, which provide health care, education, legal aid and advocacy for people with albinism in Tanzania and other countries.
"Accepting the situation of being different and loving myself has helped me a lot to deal with being different, I often tell myself every morning: 'Sixmond you are handsome and unique, and it is okay to be different'," he concluded. "This has made me loved by so many people, especially after they discover that I am funny and have a lot of talents."
Sixmond added, "My advice to other people with albinism is to realize that everyone in this world is challenged, so use your mind to turn the challenges into opportunities for your life. Have a positive mindset, a positive attitude, and tell yourself these words every morning and every night: 'You are lovely, you are the best, and you can do anything you want in your uniqueness.'"
