ALEX MAGAGA

The story of Standing Voice's Operations Manager

By Standing Voice

January 9^th, 2020

Alex Magaga is a founding member of Standing Voice.

For more than a decade, he has led the fight to protect and empower persons with albinism in Tanzania.

To mark the 5th anniversary of Standing Voice, Alex reflects on his own extraordinary journey.

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My childhood was not an easy one.

Losing my parents at a young age meant I was passed from one uncle to another. A lot about myself now I would say is a reflection of my childhood. Generally, life was hard. That’s where my connection to people with albinism begins: common hardship, a basis for empathy.

Before Standing Voice, I knew nothing about albinism. The stigma that clouds the condition is so deeply ingrained in my society, and I was part of that. I didn’t know anything because people in my community did not speak about it, but that doesn’t mean it wasn’t there; it is there, and has been for years and years.

I first met Harry, Standing Voice’s Founder and Executive Director, in 2006 whilst working as a translator for his BBC film In The Shadow of the Sun. This was my first introduction to the true costs of living with albinism in Tanzania.

At times, it was hard for me to translate the conversations taking place. I had been a part of a society that had not listened to these people for generations. This experience had a huge impact on me personally, which I never expected. It became about more than just translating. I was rediscovering my own community, seeing it in a brand new light. My grandfather, my uncles, my own brothers: none of them had the opportunity to listen or gain the deep understanding of albinism that I did. I was grateful for that.

To complete my translations, I travelled to the UK for the first time in 2008. After a lifetime on Ukerewe—a remote island in the heart Tanzania's Lake Victoria—flying to the UK was indescribable.

Can you imagine how it felt to swap mud huts for skyscrapers? I had never been exposed to life in the city. London was a whole new world. A dream I could never have envisaged. It was the first time I had been away from my island for so long. I was living in a different culture every day, speaking a different language, seeing different people, different experiences, different everything. Imagine that.

In the Shadow of the Sun met with an extraordinary international reception. Shortly after its release, Harry returned to Ukerewe and called a meeting with the albinism society. He announced for the first time that the film's success had enabled him to found a charity in the name of Standing Voice. This organisation, he told us, would continue to defend the rights of people with albinism on Ukerewe and beyond for many years to come. Harry outlined plans for the construction of a local training centre to support people with albinism and their families: a long-time dream of the albinism society, whose members erupted in applause upon hearing this news! I had never before seen the members of the albinism society so happy and excited. They believed this would mark a new chapter in the history of their island, and they were absolutely right; today, they are a united albinism society who operate proudly from the newly built Umoja Training Centre.

I became the first employee of Standing Voice, initially as the Tanzanian Coordinator and then as Operations Manager. I could not have been more prepared for the task, after the experience I had accumulated producing the documentary.

We started off small, so initially I was coordinating all of our programmes in Tanzania. I’ve seen the organisation grow from having me as the only employee to ten employees in our Mwanza office alone.

I have seen our strength increase with every individual who joins the team. For me, each new member of staff reflects the expansion of our work across the country.

It is extremely rewarding to walk into the office and see more and more people sat at our desks. Standing Voice has transformed into something everyone believes in, has confidence in, something that everyone is motivated to support.

Our impact has been extraordinary.

In the early days, we encountered skin cancer everywhere. People with albinism had never received dermatological healthcare before. That all changed when Standing Voice introduced the Skin Cancer Prevention Programme. I have seen the success of this programme with my own eyes: comparing the challenges people faced in 2006, to the results we are producing now. We've reduced cancer rates by as much as 85% in some locations, with the programme now active in ten regions of Tanzania. That's a massive success. I'm incredibly proud.

In my experience of this issue, our programmes are unique because they're holistic: their impact flows in more than one direction; they achieve more than one thing. Take our skin cancer prevention and low vision services, for instance: primarily they improve health outcomes; but they also have a social impact. They create a platform for dialogue, for people with albinism to be understood and embraced. The Umoja Training Centre (UTC) likewise builds socioeconomic security both for people with albinism and for those without; this promotes shared prosperity, and has positive implications for health, security, and community cohesion: a range of long-term outcomes only now beginning to emerge. The centre evolves its provisions in response to community feedback, so it's always changing. It's a new project every day.

That is the thing about our projects: they aren’t designed solely for people with albinism. They impact a wider cross-section of society.

Standing Voice was officially established in 2013. It’s five years since our programmes began in Tanzania. As a person involved since the very first steps, I know that the future is already brighter for people with albinism because of Standing Voice. If we can achieve this much in the space of five years, I can only imagine what we will do in the coming years.

One day, we will reach a point where people with albinism are given the same opportunities and experiences as everyone else, and are able to live a normal life. That is my hope, and my belief.