Albinism: A woman’s plight

She has sores on her face and her skin is so delicate that it could crack under the harsh sun. However, this hasn’t drained Valentine Irakoze’s feisty spirit, even when she has had to endure prejudice and pain all her life as a young woman living with albinism.

Growing up, children always picked on her and made her feel like an outcast because of the colour of her skin. Her innocence couldn’t grasp the idea of society treating her like a leper; when she grew up, she finally understood why.

Knowing that she was ‘different’, Irakoze almost dropped out of school for she couldn’t take the bullying and segregation anymore. Her family, however, stood by her and she managed to graduate with a Bachelor’s degree in business administration.

The struggle, however, was far from over because when it came to searching for employment, no one wanted to hire her.

“When I was done with university, I had to wait for more than three years to get a job. Companies were afraid of hiring me because of my condition. I always passed written interviews but when it came to oral exams I was never successful. It was then that it hit me; I suffered from albinism and people excluded me,” the 30-year-old narrates.

Irakoze recalls the hardships she has had to endure in life, including the harsh in-laws who rejected her from day one. However, through perseverance, she has managed to accept her condition and is now living life with what it has to offer.

“I have faced so much rejection; society treats us differently, as though it was our choice to be born with albinism. It is really hard living life like this but there’s little we can do about it.  I just hope society would be more understanding,” she says.

Irakoze now works as an accountant and is married with two children.

Sifora Nyirabikari, a resident of Cyuve in Musanze District, shares her story about living with albinism and raising a family with the same condition.

Segregation, a complex skin and visual impairments, are just some of the hardships she has had to endure. However, what she says hurts her most is how people treat her and her family as though they were less of human beings just because of their condition.

“People treat us differently, we always feel out of place and all we have is each other. This hurts us so much, what we go through is a lot, do people have to add to the pain we are already facing?” she asks.

The 65-year-old narrates how she had to endure bleeding from the sores on her skin that usually come when she is tending to her farm. For people with her condition, dwelling under the sun affects their skin. However, as a widow, she has no option than to do what she can to cater for her five children.

According to Rwanda Albinism Society, throughout East Africa, albinism is much more prevalent, with estimates of 1 in 2,000 people being affected.

Many women and other people living with albinism face multiple challenges which are mainly associated with the misconception society holds about the condition.

Some are subjected to sexual abuse because some people falsely believe that having sexual relations with a woman with albinism is associated with blessings.

Such myths, among other challenges, continue to taunt the lives of these people. Take for instance neighbouring Tanzania where albinos were persecuted based on the belief that some of their body parts possessed magical powers. Murderers sought their blood, hair and genitals, among other parts, to be used in witchcraft.

Putting an end to bad treatment

Nicodemus Hakizimana, the project manager of Organisation for Integration and Promotion of People with Albinism in Rwanda, says women living with albinism are faced with extreme challenges that call for urgent attention.

“Though all of us with this condition face challenges, it is worse when it comes to women. They face issues of domestic and sexual violence. They are isolated, and find it hard to farm or work like others because the sun affects their skin. They are, hence, affected by poverty and end up leading miserable lives,” he points out.

The other big challenge, he says, is skin cancer. People with this condition when exposed to too much sunlight without the adequate protective gear can result into skin damage, causing wounds that can eventually result into cancer.

Hakizimana says the only way this issue can be dealt with is by availing sunscreen at an affordable price for everyone, and with this, he calls upon the Ministry of Health to avail this product such that people can access it by using community-based health insurance commonly known as Mutuelle de Sante.

The other challenge is low vision which affects those who, for example, seek an education. Hakizimana says this affects their performance in school and this is why they want to do advocacy with Rwanda Education Board.

“People with this condition need to be allocated with special resources such that they are able to get an education. Something also needs to be done to deal with the bullying at school; children with albinism tend to drop out of school because of this,” he says.

Hakizimana is of the view that if the Government is to address issues affecting women living with albinism, they should first understand what these women need.

“Availing lotions (sunscreen) will boost their confidence. Women on the other hand should form cooperatives where they can learn different skills; this will help them get out of poverty. They should, however, have their own cooperatives because if they mix up with others they will not be able to freely open up.”

Society also needs to be taught that women living with albinism are also human and they need to be respected rather than violating them, Hakizimana says.

“This is one of the major reasons why Organisation for Integration and Promotion of People with Albinism in Rwanda was started. We wanted to do advocacy and fight for our rights by sensitising society towards working together with us in addressing such challenges,” he notes.

Claudine Brazille Uwamahoro, a businesswoman and an advocate for the rights of people living with albinism, says that one of the most important things women should know and live by is that ‘disability is not inability’.

They should know that regardless of their condition, they are still human and entitled to live their lives fully.

Uwamahoro says that people with this condition need to stand together and find solutions to their problems head on, but on the other hand, society needs to be more understanding and instead of taunting them, be there to support them in any way they can.