Disability is not Inability

My Name is Faudhia Kitenge; I am 21 year old girl with Albinism.

I grew up in Tanzania, in a small family home where my younger sister and I both have albinism. Although there are a lot of people with albinism worldwide, many people in our community still don’t fully understand the condition. Many still fear us and discriminate against us, thinking that albinism is a disease.

Albinism is a rare group of genetic disorders that cause the skin, hair, or eyes to have little or no colour. Albinism is associated with a number of vision defects, and lack of skin pigmentation makes for more susceptibility to sunburn and skin cancers. This is a condition that can not only be found in humans but also in mammals, birds, fish, reptiles and amphibians. Even though it is a hereditary condition, in most cases, there's no family history of albinism.

I know albinism is not a condition that can be cured. So although I always wished to be the same as everyone else, I know I will never have dark skin. So I had to learn to accept the way I am and focus on living my life.

I grew up in a poor, small community, and my father believed that only education will help me to live life like other people. My family did not have money to pay for my education, so they sent me to a local free primary school. And when I was a little older, I went to the government secondary school. As I grew up I faced a lot of challenges at school and in my community. The stigma and discrimination affected me a lot and gave me low self esteem. When I finished my school, I had no self confidence, and did not think there was anything I could do with my life. So I stayed living at home with my parents. When I heard about the organisation supporting people with albinism, I went to see what they were all about. And this turned a new leaf in my life, they offered me the opportunity to study social work, and now I have a diploma from the Institute of Social Work.

I know many other children with albinism face many of the same challenges I did growing up. With a lack of psychosocial support and no one to look up to, I often wanted to quit school. But my parents convinced me to stay. They told me this it was the only way I could have a chance at a better life. Thanks to my loving family, I was supported and got an education. But in many parts of Africa people with albinism are misunderstood, disadvantaged, and even attacked and killed. Their body parts are sold to witchdoctors for use in charms and magical potions believed to bring wealth and good luck.

As a social worker I have decided to be an advocate for other children and adults in my country living with albinism, as personally understand the difficulties they face every day in their lives.

My dream now is to see other people in other countries living with albinism, how they live, and how they have become successful. Some in our country have got higher degrees, but often times they stay in their communities trying to support others with albinism. I would like to try and to do more. I would like to opportunity to study overseas and get a good education, so I can be a role model for other children like me. I would like to be someone children can look up to, someone they can depend on, and some one that understands and advocates for them. I would like to do research on how to better protect children with albinism, so I can advocate for programmes and policies that protect and empower them.

I want to live my dream as a social worker, and role model to other children.

My dream is to live in an Africa where children with albinism are not considered ghosts of bad luck; where people with albinism do not have to live in fear of being hunted for their body parts; where people with albinism are not only well educated but also leaders in their countries!

Disability is not Inability!

Editor’s note: As a result of the ever present danger of being killed for body parts, young people living with albinism often live very sheltered lives. They don’t have the same access as other young people to information and services concerning their sexual and reproductive health and rights, including how to prevent HIV. We need to reach all young people if we are to end AIDS by 2030.

Faudhia Kitenge attended the RIATT-ESA sponsored Children’s pre Conference at the REPSSI Psychosocial Support Forum held in Victoria Falls, Zimbabwe in September 2015.