Niyodusenga on coping with albinism, stigma

It was a struggle for Bernadette Niyodusenga’s parents to raise 12 children. But apart from family financial struggles, Niyodusenga was also struggling with her own misfortune- a congenital disorder characterised by complete or partial absence of pigment in the skin, hair and eyes – otherwise known as albinism. Among the 12 children, Niyodusenga who is now 33 years old, was the only child born with the condition. The mother of two says her childhood was anything but peachy. Many times, she was made fun of, other times, people stared at her mockingly. Kids would whisper muzungu (local term used to refer to white people) when she walked by. In 2008, Niyodusenga dropped out of school after failing national Ordinary level exams, which she sat from Groupe Scolaire Saint Phillipe located in Gisagara District. In 2010, she took a leap of faith and left her parents’ home at the age of 25 and went to Matyazo Sector in Huye District where she met a nun called Soeur Immaculate who enrolled her in a vocational centre to acquire sewing skills. Today, Niyodusenga says she hopes to inspire anyone who may be facing the same challenges because of albinism and the related stigma from society. “My family never treated me any differently, but outside home, many people seemed to reject me. My family was too poor to take care of all 12 children. Also, my condition came with its own expenses,” she recalls. Along the way, she realised that the only way she’d make it in life is if she started working hard herself. She is currently a seamstress in a group of four, all women. Niyodusenga with her colleagues. Starting a life for herself Niyodusenga says meeting Soeur Immaculate was her turning point. “I learnt how to sew clothes over a period of seven months. Over the years, I’ve earned a reasonable amount of money and I can take care of my family and the expenses that come with albinism,” she explains. Niyodusenga lives in a rented house and cares for her two children. The children, however, do not suffer from the condition. The father of her children, Claude Muhayimana, abandoned her in 2014 after she had their second child. “We lived together and later he left me for no reason. At least he didn’t give me one. I couldn’t force him to be be with me against his will,” she says, adding that he doesn’t offer any financial support. “On average I earn at least Rwf 3,000 daily. I use the money to feed my children, pay rent for home, and also the rental fee for my sewing machine, after all these expenses I’m still able to save a little,” she says. Niyodusenga says that the skills she acquired in sewing clothes has kept her off the streets, begging and depending on others. “People with albinism have many challenges, including getting the special body lotion that costs up to Rwf 50, 000,” she says. “I don’t look up to anyone to get me my needs,” she adds with a smile. Niyodusenga says she joined a women’s cooperative, Intambwe, where she saves Rwf 1,000 per week and is also able to get a loan should she need it. “This condition won’t stop me from working and pursuing success,” Niyodusenga notes. Niyodusenga points out that people with disabilities face various challenges that deter them from working and building their lives normally. “Society acts indifferent towards us and as a result we end up in isolation. Disability shouldn’t make one lose their spirit. We should build each other,” she says. “Of course disability is bound to affect one’s life. Many who suffer from one or the other go through life miserably, and society doesn’t make it any better. However, failure is when you give up and stop working towards your dream. I refuse to fail,” Niyodusenga adds. Niyodusenga says that her main challenge now is the fact that she doesn’t have her own sewing machine, but she hopes to change that someday. What her colleagues say Anastasia Uwumukiza, one of Niyodusenga’s co-workers, says that Niyodusenga is the embodiment of ‘fortitude’ in their group. “She is very keen on sewing and motivates others to work hard,” Uwumukiza says. “When it is too hot, it’s a challenge because of her skin condition. However, she is not one to sit back and wait for people to help her out,” Uwumukiza adds. Uwumukiza hopes that Niyodusenga will inspire anyone living with disability or complications to refrain from wandering on the streets begging or engaging in sex trade, as that will only endanger their lives. Uwumukiza also feels that albinism needs to be addressed, with hope that those suffering from it can be helped, for example, with the special skin-care lotion that might be expensive for some. She adds that it should be taken as seriously as any other disability because they all face stigma. “They can only build themselves if society puts some effort into it too. They need assistance just like other people with disabilities,” she adds. Niyodusenga and a friend at work. How can people with albinism can get support? Gaston Rusiha, a Member of Parliament (MP) who represents people with disabilities, explains that government has put in place various measures to help people with disabilities in their daily life. The MP adds that people with albinism should take advantage of the several initiatives created to transform their lives. “There are government institutions in charge of helping people living with disabilities. They even assist private institutions that work with the disabled,” he says. “People with albinism are registered and identified countrywide and this is aimed at establishing their challenges and avail the help needed,” Rusiha explains. However, he notes that people living with albinism live a ‘silent’ life and rarely speak out about their challenges. “It can be helpful for local authorities to take note of all of their challenges and act accordingly when they do speak out,” he says. FACT FILE According to the Rwanda Albinism Society website, Throughout East Africa, albinism is much more prevalent, with estimates of 1 in 2,000 people being affected. The term “person with albinism” (PWA) is preferred to the term “albino.” While numbers vary in North America and Europe it is estimated that 1 in every 20,000 people have some form of albinism. Close to 100 albinos were murdered in western Tanzania with those behind the attacks trading their body parts for witchcraft purposes. Earlier this year, The East African Legislative Assembly (EALA) legislators, voted unanimously in support of a motion that were to lead to enactment of a law of prohibition of acts of brutality against persons with albinism. The legislators implored the EAC partner states to prioritise affirmative action for Persons with Albinism to address a long history of marginalisation. editorial@newtimes.co.rw

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Niyodusenga on coping with albinism, stigma