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Hannah Wanja Maina

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Campaigning to Support People With Albinism

Posted: 14/12/2012 14:29

December is an important time of year when we celebrate the International Day of Persons with Disabilities. Each year the day focuses on something different. 2012 is all about removing barriers to create an inclusive and accessible society for all.

While we are celebrating this important day, I would like to draw your attention to the plight of persons with albinism, a medical condition in which the body produces no or little skin pigment.

In our local town in Kenya, people with Albinism are called "wazungu", which is a term which I personally do not like. My first encounter with an albino was back in 1998 when I was at school. I was very young and I will admit I was very shocked. However, over the years I have developed strong friendships with the albino community and it pains me to see the challenges and discrimination they face on a daily basis.

Life with albinism can be a death sentence. Of all the disabilities I feel this is the most stigmatised. Imagine walking into a room and everyone is staring at you and knowing that most people don't want to touch you because they feel your condition is contagious? Witch doctors also spread the false belief that expensive concoctions made from albino hair, limbs and skin will bring good luck.

This means that albinos live in fear of their lives and are hunted, killed and dismembered with their body parts being sold. It is also believed that if a man who has HIV has sex with an albino then he will be cured. This superstition has increased the number of rape cases and infection rate of people with HIV.

Job opportunities are very rare for albinos. You can therefore imagine the excitement of one of my albino friends, when he was invited to a job interview one day. But it was a trap he very nearly walked into. When he arrived, he was very close to being kidnapped and killed, and was only saved because local police happened to be nearby.

As well as shocking attacks, albinos often die from painful skin cancer as sun cream is expensive and unaffordable for poor families. I hate seeing people walking around with severe sunburn when I know it could have been prevented. Through my campaigning via social networking sites I am calling on the Government to provide sun cream free for albinos.

I am also raising awareness locally about why albinos have pale skin and dispel some of the myths surrounding them. A major milestone was supporting a friend of mine to be interviewed by their local television station, as the media play a key role in influencing the public's perceptions about disability.

We are already celebrating the first achievement of this campaign as the Government has officially agreed to monitor the number of albinos living in Africa. This will help them understand the issues and take action.

I have so much respect for my albino friends who have accepted themselves and decided that they will move on despite this condition in the midst of all the myths and discrimination. Everyone has a fundamental right to life - albinos have a right to be free in their own skins, just like everyone else. They are beautiful on the outside and the inside, with unique personalities and abilities.

As a disabled person myself, I understand the discrimination that people face on a daily basis. At school I was known as 'Hannah, the girl who uses a calliper'. I eventually overcame this label and became one of the top performers in my class. It is experiences like this that first got me interested in campaigning.

This inspired me to start my own charity 'Friends of Wanja Initiative,' a mentorship programme at Joy-Town primary school which supports children with disabilities to feel empowered to learn. I talk to children and help build their self esteem and show how their skills are equally important and valued. I am proud of its success - it has touched the lives of 600 young people and we will continue to reach out to more.

I am also a member of Young Voices, a Leonard Cheshire Disability programme that brings together young disabled campaigners from 20 countries around the world.

We are actively campaigning with disabled people to ensure we can access the same resources as everyone else, including education, employment, healthcare and social and legal support systems.
With one billion disabled people in the world, it is important that we are included and listened to, (which is long overdue). I feel very optimistic that together we will change attitudes to disability.

 

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