When 43-year-old Andrew Bimenyimana was a young boy, stones were thrown at him by people old enough to know violence is wrong. Not only did they stone him, but they also called him dehumanizing names, and all that was just because he suffered from Albinism. When he graduated and applied for a job, he was immediately shortlisted, and he passed the exam with flying colours. They invited him for an interview. “I went for the interview, and when I entered the room, the interviewers were really shocked. I could see it on their faces. They then told me, ‘it’s okay! You can now leave’. They didn’t even ask me anything.” “To have albinism and grow from a child to an adult, I would describe it as a tough war” Bimenyimana is only one in many Rwandans suffering from Albinism who have faced or still face stigma in society, and he says this is one of the many reasons most of them live in poverty. He was lucky to have a supportive family that didn’t abandon him, and his courage and confidence kept him going. He now holds a master’s degree in Public International Law and is an assistant to the prosecutor of the National Public Prosecution Authority at Muhanga Intermediate Level. He says social stigma is still there, but things are getting better for people like him. “Some parents hide their children because of ignorance. All this affects the children’s future.” Every June 13th is International Albinism Awareness Day. This year’s theme is Made To Shine and it was chosen to celebrate the achievements and successes of people with albinism worldwide. Health challenges of albinism Albinism is a result of lack of pigmentation (melanin) in the hair, skin and eyes, causing vulnerability to the sun and bright light. Due to this fact, almost all people with albinism are visually impaired and are prone to developing skin cancer. The UN data indicate that in some countries, the majority of persons with albinism aged between 30 and 40 years die from skin cancer. However, access to regular health checks, sunscreen, sunglasses and sun-protective clothing would prevent the disease. “If we are helped with sunscreen, our life expectancy will be raised. Because every doctor we visit tells us the sunburns lead to cancer. “Most people with Albinism are really poor. A person who cannot afford food will not afford sunscreen,” Bimenyimana explains. Hakizimana Nicodem, the Executive Secretary of OIPPA (Organization for Integration and Promotion of People with Albinism) confirms that sunscreen is a luxury to many people with Albinism, yet it is a basic need at the same time. “We can’t afford screening and treatment of skin cancer and we can’t afford sunscreen to prevent it. It now costs Rwf10,500.” He suggests that the government puts people with Albinism in a different category from other people with disabilities so that resources could be allocated for systematic screening of skin cancer, and that sunscreen could be bought with health insurance, mutuelle de santé. Hakizimana adds that stigmatization is still affecting them; calling them names, unemployment, segregation, all because their condition. He also adds that women with Albinism face sexual violence because there is a wide belief that having sex with them heals STI/D’s and HIV/AIDS. However, most abusers get away with it because the victims don’t feel confident enough to report. He calls for law enforcement on such cases. “People should understand that people with Albinism are human too.” People with albinism are vulnerable to attacks and killings especially in sub-Saharan Africa because they are regarded as objects of erroneous beliefs and myths influenced by superstition. This is a threat to their lives, and hundreds have been killed at least in the last decade.
