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LOOKING BACK

Executive Director Harry Freeland reflects on the fifth anniversary of Standing Voice

By Standing Voice

May 17^th, 2018

Working in a small but busy charity, we rarely get the chance to look back and reflect on the remarkable achievements of our past. On the occasion of our fifth birthday, I wanted to take some time to reflect on our humble beginnings, and how we’ve grown since.

I started work on In the Shadow of the Sun in 2006. Through the documentary, I hoped to raise awareness of the plight of people with albinism in Tanzania. A part of me hoped that, in turn, this would inspire a movement. What I could never have known was just how much of an impact it would have.

In 2013, almost by chance, I met Anton Bilton with whom I founded Standing Voice. We had a simple goal: defending the rights of people with albinism in Africa. Our work isn’t done, but the momentum we’ve gathered in these last five years has become unstoppable.

As I write this message, our organisation is combatting discrimination and ill health on every front, in Tanzania and across Africa. Our advocacy campaigns are transforming hearts and minds in rural communities all over Tanzania, and increasingly penetrating global institutions like the UN and World Bank; our Vision Programme continues to give people with albinism a fair shot at education and employment; and our flagship Skin Cancer Prevention Programme is directly confronting the single biggest cause of death for people with albinism in Africa.

As we celebrate our first five years of operations, I salute the bravery of our beneficiaries, who fight stigma every day, and those within Standing Voice and its partners who work tirelessly alongside them. It is with great pride that I dedicate this message to the incredible individuals from the Standing Voice family, whom I’ve asked to share some of their favourite memories from their time with Standing Voice.

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Anton Bilton (Co-Founder)

"I almost feel like this cause purposefully found me. I don’t really watch much TV but was flicking through channels at the end of the news one evening when I saw a headline for a documentary about people with albinism in Africa. It was just starting, so I put it on. When the programme ended an hour later, I was in absolute shock at what I’d witnessed. It horrified me that you had babies being born and, within seconds, the mother-in-law, the father, the grandparents, perhaps even the mother herself, were instantly ostracising this new born child, sometimes to the point of murder.

That evening, after the programme, I had great difficulty getting to sleep. I woke constantly in the night and the next morning, I got up early and searched the internet to try and really understand the situation for people with albinism in Africa.

Through the miracle of the internet and the concept of seven degrees of separation I tracked down Josephat Torner in Tanzania, who’d been featured in the documentary, and through him I discovered that what I had seen was an abridged version of “In the Shadow of the Sun”, Harry’s incredible film. I watched the full documentary and contacted Harry and we met in London. Like me, he had been deeply moved by the plight of these people and we went on to start the charity: Standing Voice. It was just one of those marvellous moments where it all came together: I was moved and wanted to help, I trusted Harry, and the charity was born."

Jon Beale (Director of Development)

"A memory which will never be forgotten is my first staff trip to Tanzania with Harry. This was the first time he showed me Ukerewe. I recall clearly Harry showing me the island from afar as we edged closer in the slow chugging ferry. At that point I couldn't possibly grasp how special that place was, even though Harry told me so much, nor how much SV would come to accomplish there. Looking back at that special trip, it is striking to remember how new everything was to me, and just how much work there was to do with the community on the island. It really did seem a daunting challenge to attempt social change, and even more so to gain people's trust. Looking back at that first trip, when the SV team was just a few individuals, and comparing the realities now both on the ground and within our growing team, it's truly astounding how much has been achieved!"

Alex Magaga (Operations Manager)

"One of my fondest memories was when Harry came to Tanzania in 2013 with Jon, and held a meeting with members of the Ukerewe Albinism Society.

This was when Harry announced for the first time that he had founded a Charity in the UK in the name of Standing Voice and that this Charity would be supporting members of the Ukerewe Albinism Society (UAS) and other People with albinism across Tanzania. The news could not have been more astonishing for me. I would go on to become the first employee of SV in Tanzania with the role of Lake Zone Coordinator.

At the Meeting Harry made it clear that Standing Voice was going to fund the Construction of the Umoja Training Centre, a long time dream of the Albinism Society. This triggered cheers and applause from UAS members.

I had never seen members of the Albinism Society so excited and filled with such joy before. They believed this would mark a new chapter in the history of their lives. A new beginning of hope. They were absolutely right! Since that meeting, the lives of members of UAS have never been the same again."

Jamie Walling (Programmes Manager)

"Canoeing 60 miles along the Great Glen, cycling 200 miles across Scotland and summiting 7 highland mountains all in 7 days: The Highland Heroes fund-raising event is without doubt one of the most incredible adventures I've ever been on.

Through this experience I realised the value of stepping outside of my comfort zone and into a place that seems daunting and unknown. This is the place where incredible things happen — things that surpass all expectations — and where experiences become bigger, more valuable and more important than you could ever have imagined. By reaching out and asking people for support I saw that generosity and kindness are alive and well among us. All we need to do is unite this aspect that is within all of us and we can really make a difference in the world.

I am immensely proud having conceived and managed this event and am blown away by the amount we managed to raise for our wonderful charity!"

Sabine Zetteler (Trustee)

"I watched In The Shadow of the Sun and thought it was both the most beautiful documentary film I'd ever seen and the most heart-breaking. I cared deeply about the issue from that moment and vowed to do whatever I can to support Harry and his involvement with the albinism community. As soon as Standing Voice was founded, I've been a supporter and fan... and I'm now a very proud trustee.

A favourite memory for me was when I saw the plans for the Umoja Training Centre coming together on Ukerewe Island. All those discussions, all the love, energy, time and effort... and this beautiful and necessary community-focussed building was beginning to emerge from the earth. That's the moment I knew that SV was going to be a real driving force for change from community level right to their heights of government and international development."

Kaballa Maganja (Health Programes Coordinator)

"In the last three years I’ve watched our Skin Cancer Prevention Programme blossom into a powerful and sustainable mechanism of change. In its infancy, the programme was serving only three locations in Mwanza; now, it operates at 45 sites across ten regions of Tanzania: the most comprehensive initiative to prevent skin cancer in our country's history. Early on, every new clinic felt like a battleground: so much cancer, and so many patients unable to manage their health or even understand their rights. Today, rates of cancer are dropping, and surgery referrals in our most established locations are decreasing. There is much work still to be done—extending our programme to reach the most isolated communities across the continent—but, together, we are now glimpsing the horizon of skin cancer prevention for people with albinism in Tanzania."

Dr Rebecca Kammer (Vision Programme Director)

"I originally came to Tanzania after watching a documentary about the atrocities against people with albinism in Africa. As an optometrist, I thought there must be a way my help with vision could help with quality of life for these marginalised people. When I arrived, I realised the problems facing people with albinism were so much bigger than what I had anticipated. People were dealing with life and death, and there I was talking about glasses! The need felt so great in comparison to what I could offer.

Looking at the big picture today, I see so much more hope. Hope in the thousands of children and adults we've helped. It’s been a lot of work, and there is still much more to be done. Every trip, we make progress. We build on what we've done before.

I always feel a little bit guilty to be prideful and think “I did this!” But i'm very proud of what we’ve done. I know it’s making a huge difference and see the change happening."

Jamie Walling (Programmes Manager)

"In the summer of 2016, Standing Voice joined forces with Grammy Award Winning Musician Ian Brennan and his wife, the photographer and filmmaker Marilena Delli, to fly to Tanzania to meet the people we have known and worked alongside for more than a decade.

Travelling to Ukerewe Island in Lake Victoria, Ian and Marilena encountered some of the most vulnerable people in Tanzanian society: individuals who had never before picked up an instrument, had been banned from singing in church, and were routinely shunned from public life. He heard stories of isolation, hardship, resilience, and hope.

Over the course of one week, people with albinism and their families congregated at the Umoja Training Centre, to share their life experiences in songs: Ian encouraged participants to experiment with their voices—and makeshift instruments. Weaving riffs and melodies together —Ian was able to galvanise a richly layered collection of music.

A year later, the songs were reaching audiences worldwide in the form of debut album White African Power. The music group—signed, now, as the Tanzania Albinism Collective—has embarked on an extraordinary journey to share their music internationally. Obtaining birth certificates, passports, and visas and travelling to the UK to perform at WOMAD Festival."

Sam Clarke (Communications Manager)

"For me, our community training initiatives are indisputable proof that our work is changing lives. Ten years ago, Ukerewe Island was home to a deeply impoverished community marked by unthinkable segregation and violence: siblings forced to eat from separate plates in the belief their albinism was contagious; women raped because of the myth their albinism cured AIDS; and individuals deceased from skin cancer but denied burial, because they were ‘ghosts’ whose bodies would disappear.

The Ukerewe of today looks very different. At the Summer Skills Workshop, I watched an entire community come together—in the pursuit of shared prosperity. The success of this event, which has led to concrete skills development and sparked a litany of new local enterprises, is the best conceivable litmus test of our organisational success. Because of Standing Voice and its supporters, this ceaselessly rural community—buried in the heart of Lake Victoria, four hours from the mainland—has left behind its painful past and struck out, united, on a far brighter path. There is no better indication and no stronger manifestation of change."

Rosa Shindler (Communications and Fundraising Volunteer)

"In 2017 Standing Voice was featured in Born Too White, a BBC documentary exploring the persecution of people with albinism in Africa. The film followed Oscar Duke, a British doctor with albinism, as he travelled to Tanzania and Malawi to see what life is like for people who share his condition.

Seeing our work through Oscar’s eyes—encountering it, full circle, from the perspective of a stranger—invigorated my own pride in what our programmes achieve. Watching and absorbing as an outsider, I was shocked afresh by tragedies I already knew, and captivated, like the first time, by the energy, compassion, and momentum of Standing Voice. It appears I wasn’t alone: coming into the office the day after broadcast, we saw an incredibly positive outreach from viewers. The journey of Born Too White—from inception to production to release—was an extraordinary opportunity for self-examination, and a wonderful platform to share our work with the British public."

Jon Beale (Director of Development)

"In 2016, Standing Voice partnered with the World Bank to execute a comprehensive needs assessment of people with albinism in Tanzania. The apex of this process came with Action on Albinism in Africa, a cross-sectoral conference hosting delegates from 29 African countries and a range of disciplinary specialisms. Standing Voice was at the core of this truly historic moment, bringing together a geographical and professional diversity of experts to address the manifold challenges facing persons with albinism across Africa. An enormous achievement for Standing Voice, this conference elevated the topic of albinism to the highest echelons of international advocacy. Even more importantly, hindsight shows, it laid the foundations for some of our greatest milestones since."

Kate Scholler (Health Programmes Coordinator)

"One of my fondest memories with Standing Voice was when I visited Ukerewe for the first time and joined the outreach theatre group to perform in villages across the Island. To witness the reaction of the community as the group's performances unfolded was very moving for me. Some people laughed, others were angry or sad as they processed the information in their mind. Many asked questions, which showed that they were engaged and that the message was getting across. For me, this was a proof that the community do listen, that they are eager to learn and that their wrong beliefs about albinism can be changed if the right language is used. This experience left me hopeful for the future of people with albinism in Tanzania and proud to be part of Standing Voice."

Sabine Zetteler (Trustee)

"Visiting Mwanza in November 2017 for the first time was an ultimate highlight for me. I was lucky enough to visit two clinics - Vision and Skin Cancer and it was a huge moment in my development as an ambassador for the charity and as a human being.

The Standing Voice team on the ground, who until that moment were names on a page were these passionate, caring and driven people devoting weeks, months and years to the cause with such humanity. It was exciting, humbling, exhausting and inspiring and I'll never forget it."

Sam Clarke (Communications Manager)

"In September 2017, I had the honour of representing Standing Voice at the United Nations in Geneva. Invited to speak as a regional specialist, I had the not-straightforward task of disentangling albinism, witchcraft and human rights—of defining and clarifying the relationship between these terms—amid a conference hall of brilliant, discerning and experienced minds. Listening and learning from other contributors—and thinking hard about our own organisational standpoint—was among the most intellectually rewarding experiences of my career. I felt humbled by the trust invested in me by my colleagues; more than that, I was inspired to see the work of our organisation penetrate the halls of the United Nations. With the support of our partners—not least among them IK Ero, the UN Independent Expert on Albinism—the concerns and priorities of our beneficiaries have wound their way into the world’s most prestigious arenas of advocacy."

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From all of us at Standing Voice, we extend our sincerest thanks to you, our family of supporters. We feel your support and enthusiasm every day: it’s your kindness and generosity that allows us to do our work. Thank you for making the last five years so extraordinary. We look forward to writing our next chapter together.