Four years ago, a music video that now has millions of views on YouTube went viral, after a Rwandan woman with albinism, Claudine Mukarusine, was featured in the love song. The song ‘Igitekerezo’ (meaning ‘idea’) shows Rwandan songbird James Ruhumuriza aka King James serenading Mukarusine in what many can call a masterpiece. The duo worked together to raise awareness about albinism after rampant reports of albinos being killed in Africa, especially in Tanzania and Burundi, countries that both neighbour Rwanda. People with albinism are vulnerable to attacks and killings, especially in sub-Saharan Africa, due to erroneous beliefs and myths influenced by superstition. This is a threat to their lives, and hundreds have been killed in the last decade at least. In some parts of Africa, body parts of people with albinism are considered to have magical properties that bring luck and wealth. Women are often subjected to sexual abuse because some communities believe that diseases such as AIDS can be cured by having sexual relations with women with albinism. “I used to cry alone in my room, wondering why I was a target just because of the colour of my skin. It used to break my heart to hear that I could be killed for that mere reason,” Mukarusine said. For Mukarusine, who grew up in Kirehe District, which borders Tanzania and Burundi, there was a constant fear that she could be kidnapped or harmed, as there were stories of children being taken in that way and killed. Although she considers herself one of the lucky people with albinism, growing up in a community with no information on albinism was not easy. She was born in 1991 to loving parents who made sure she was not discriminated against, as much as they could control. Mukarusine believes she received a great deal of parental love, which is what she attributes to who she is today. “My parents were also overly protective of me. Sometimes I couldn't go to church like other children because they didn't want people to congregate around me and bully me,” Mukarusine said. She will never forget the moments when she would pass by a school or a centre and people, both young and old, would say rude things about her based on her skin colour and the myths in the community. She also remembers when she was younger when some people would refuse to shake her hand or sit with her in class. What is albinism? Albinism is a result of a lack of pigmentation (melanin) in the hair, skin and eyes, causing vulnerability to the sun and bright light. Due to this, almost all people with albinism are visually impaired and are prone to developing skin cancer. Data from the UN indicate that in some countries, the majority of people with albinism aged between 30 and 40 years die from skin cancer. Jean Chrysostome Kagimbana, a dermatologist, told Beyond Talk that regular health checks, sunscreen, sunglasses, and sun-protective clothing would prevent the disease. “That is why we encourage them to come for check-ups consistently at least every six months. However, the turnout is still low due to the low awareness of albinism,” Kagimbana said. However, this is nearly impossible in Sub-Saharan countries, particularly Rwanda, where people living with albinism live in extreme poverty due to discrimination and stigmatisation. Only a few of them graduate, and manual labour which is often done under the sun accelerates their risk to having skin cancer. However, Kagimbana said that while albinism has no cure, its effects can be minimised if people are aware of the condition and take the necessary steps to address its challenges. Due to a lack of melanin in the skin and eyes, people with albinism often have a permanent visual impairment. They also face discrimination due to their skin colour, and they are often subject to multiple and intersecting discrimination on the grounds of both disability and colour. Increasing awareness of albinism Every June 13 marks International Albinism Awareness Day, a day to celebrate the human rights of persons with albinism and to increase their visibility in all domains of life. This year’s theme is “Inclusion is Strength”, which calls for ensuring the inclusion of the voices of persons with albinism in all sectors of life. It also emphasises the importance of including a diversity of groups from both within and outside the albinism community. East Africa, particularly Tanzania, has the highest rate of people with albinism worldwide. Whereas one out of 15,000 people in most African sub-regions has albinism, one out of 1,400 Tanzanians has the condition. Reports say that a mutation of the albino gene OCA2, which produces the melanin pigment responsible for tanning the skin, is carried by one in every nineteen Tanzanians. Kagimbana explained that it takes two people with the albino gene, a mother and a father, to produce a child with albinism. However, this does not mean that all of their children will have the genetic condition. How to be more inclusive Mukarusine explained that when she was in school, she had to switch places all the time, and sometimes the teachers would complain that she was disrupting their class—people with albinism often have visual impairment, and what would be deemed conventional in school materials is often not friendly to people with albinism. Mukarusine remembers when she was seated under a blackboard to read, and it fell on her foot. She had to put in more effort than the rest of the class to catch up on the notes. She believes these are things that could change if issues faced by people with albinism were prioritised. “Everyone from all walks of life should be aware of albinism and the issues involved, not out of pity but in full understanding that it is human rights. Older people will then know to stop children from going out in the sun, the schools will start making albino-friendly notes, and more people will be aware of the dangers of the sun,” Mukarusine said, adding that some children drop out of school because they can’t read textbooks and other notes. She also said that people with albinism should be included in the country’s decision-making positions, as well as be recognised legally as people living with disabilities. “We are also grateful to the government for scaling up efforts to make sunscreen accessible to vulnerable communities. Now it costs Rwf 200 with Mutuelle de Santé. But it is challenging for people who have private health insurance because none of them covers its cost,” Mukarusine added. Sunscreen now costs about Rwf 15,000. Nicodem Hakizimana, the founder and Executive Director of the Organization for the Integration and Promotion of People with Albinism (OIPPA), said while efforts to make sunscreen available have undoubtedly been beneficial, some health centres are hesitant to stock them on their shelves. “Some health centres don't understand why having sunscreen available at all times should be a priority. People with albinism are often told that sunscreen is not available, and some of us end up developing skin cancer because of this,” Hakizimana said. He also said that the government bears a greater burden in ending discrimination against people with albinism, by having them in all key government positions such as in the parliament, ministerial positions, and more. “They should send a message that people with albinism are just like everyone else and are capable of doing what everyone else can. This way, young albinos and their parents will be inspired and know that they too can be great achievers,” Hakizimana added. If Mukarusine had grown up in a safe environment, she could have become a doctor. Her parents thought it wise for her to attend a nearby school which did not offer any science subjects. Nevertheless, she managed to excel in her literature studies and later graduated from the University of Rwanda with a degree in Education. Mukarusine has contributed greatly to the advocacy for people living with albinism in Rwanda and other disabilities in general. She has worked in various groups, such as the Pan African Movement, the National Paralympic Committee, and the National Union of Disability Organisations in Rwanda (NUDOR), in top leadership positions. Her work mostly revolves around anti-discrimination, capacity-building, and women’s rights. She’s currently working as a project manager at NUDOR.
