THE ACTIVIST

- Bonface Massah -

By Standing Voice

January 17^th, 2018

Bonface Massah is a distinguished albinism activist, a National Human Rights Commissioner, and the Country Director of Standing Voice Malawi.

Read his extraordinary story below:

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I was born in 1983 in Malawi.

There were six children in our family. Three had albinism.

I was the third to be born with albinism. By the time I was born, my parents knew how to care for a child with albinism. Earlier on, when my elder siblings were born, it was much more challenging and confusing. My mum struggled a lot, but luckily my dad supported her.

Many women go through shock when a child with albinism is born. We don’t have counselling for parents in Malawi. For my mum, the shock didn’t last long. She accepted it and moved on with life.

Bonface as a baby. Photo Property: Bonface Massah

Bonface's siblings. Photo Property: Bonface Massah

When I went to primary school, I would get bullied, called names.

Sometimes in the street, strangers would stare. People wanted to touch my skin, to see what it felt like.

I got a lot of support from my brothers and sisters. Luckily, I was going to the same school as my siblings, and they were very protective. They included me, and gave me confidence.

Growing up, other families who had a child with albinism would come to my parents asking for help. Some even thought our family was an orphanage and asked my mum if they could leave their child with her. When new parents of children with albinism came to my mum for counselling, I would sit in and listen.

My older sister became very active in the movement for the rights of people with albinism. In 1999, I followed in her footsteps and became very active, taking on the leadership of the movement: I was National Coordinator of the Association for Persons with Albinism in Malawi until 2018, when I became Standing Voice's Country Director in Malawi.

The first step in getting involved was realising my rights had been violated. I’m living in a society in which I’m very sure those rights have been violated, and I have worked with people, like my brothers and sisters with albinism, whose rights have been violated. I need my rights to be respected. That’s critical for me. It’s something that’s in me: my albinism won’t change.

If I don’t stand now, societies to come will always have these superstitions, this stigma around my condition.

And there are more people with albinism who are being born. So we have to work today to help change the generation to come.

Bonface and his son - Photo Property: Bonface Massah

Bonface demonstrating correct sunscreen application. Photo by Harry Freeland

I have seen a lot of change through my work with different families and children. The key moment for me is each time we work with the parents, I can see the change, I can see the energy in them, knowing more about the disability or their child. We need to do more, to see more change like this. The change that you see when you talk to them, that’s the inner peace that you want every human being to enjoy.

Initially, there was a lot of self-stigma. When you spoke to friends with albinism, they would ignore you. They didn’t want to talk to you. But a lot has changed. Now I see a lot of young people with albinism standing for their rights, joining the movement, trying to engage. People are coming out in large numbers. Families are trying to understand how to raise a child with albinism. There is a shift in attitudes.

Ordinary people with albinism and their families are championing the change. It is critical that we, the people with albinism, are at the forefront of the fight. We are not just there for other people to speak for us. We stand on our own, and we try to demonstrate to people why we want our rights to be respected. I think that’s something very positive.

Much of the work we do, as leaders, is to maintain the momentum that comes from ordinary people, and build a movement which can challenge the bad things in our society.

Bonface Massah and Ikponwosa Ero (UN Independent Expert on Albinism)

Meeting with the President of Malawi to discuss a response to attacks - Photo Property: Bonface Massah

Bonface speaking at the US Embassy in Lilongwe. Photo property of US Embassy | Lilgonwe.

For people with albinism, coordination and solidarity is important. There are many movements and associations of persons with albinism across Africa. We need to continue bringing their voices together to create a sense of unity and solidarity.

This has been at the core of my mission as the Country Director of Standing Voice Malawi. In the last few years, we have brought dermatological healthcare to hundreds of people with albinism across Malawi, and provided counselling and rehabilitation to torture victims and their families throughout the country. I know that this is just the beginning: soon we will be introducing new programmes, and reaching corners of Malawi where support for people with albinism has previously not been inaccessible.