Albinism – Meet Harry Freeland, Standing Voice founder

03/16/2017

In Tanzania, the Foundation supports the programme of the NGO Standing Voice, which assists people with albinism. The NGO’s founder, Harry Freeland, who also directed the documentary In the Shadow of the Sun, talks about his dedication to this cause.

This NGO was founded in 2013 and promotes social inclusion of marginalised groups, especially with people with albinism in Tanzania.

In 2016, concerned with the high mortality rate associated with skin cancer in people with albinism in Africa, the Fondation Pierre Fabre put out a call for proposals to aid those impacted by this scourge. Impressed by the work of British NGO Standing Voice, the Foundation has since been supporting an ambitious programme to prevent and treat skin cancer in people with albinism.

Before founding Standing Voice and serving as its Executive Director, Harry Freeland directed In the Shadow of the Sun, a BBC documentary that drew great international acclaim. The film follows Josephat and Vadestus in Tanzania, recording the day-to-day experience of two people suffering from this disease. He explains the reasons for his dedication to this cause.

– As a filmmaker, what prompted you to defend people with albinism?

10 years ago I arrived on a remote Island in the heart of Tanzania’s Lake Victoria to make a documentary for the BBC. At this time, I knew very little about the discrimination faced by people with albinism in Africa. Over the next six years, I followed the lives of two inspiring men with albinism,  Josephat and Vedastus,  who bravely fought discrimination amid escalating witchcraft-fuelled attacks.

Ukerewe Island has a large population of people with albinism. Local folklore attributes this to a legend in which large numbers of people with albinism were taken from the mainland and dumped there as children and left to die. In 2006, I began to document the Island’s Albinism Society as they moved from village to village to determine how many people with albinism were living on the island.

This survey discovered 62 people with albinism on the Island. For many of these people it was the first time they had talked openly to anyone about their lives. Individuals spoke bravely about the depth of discrimination they had faced: people had been treated like animals, locked away in dark rooms, forced to eat from separate plates to their siblings in the fear their condition was contagious. Many had attempted suicide. Women talked of being raped in the belief that their albinism could cure HIV/AIDS.

I soon learnt that the challenges don’t end there: without melanin pigment, people with albinism are uniquely susceptible to ultraviolet radiation and skin cancer, particularly in hot countries like Tanzania. Only 2% survive to reach the age of 40. Healthcare is sporadic, rarely targeting the needs of people with albinism; and if a person with albinism is lucky enough to go to school, the overwhelming likelihood is their condition will be overlooked, and their vision needs ignored in the classroom.

During the six years making In the Shadow of the Sun in Tanzania, 72 people with albinism were brutally murdered, and many more were attacked and left mutilated. This was an effect of witchcraft beliefs about the karmic potency of people with albinism’s limbs, which are thought to generate wealth and fortune. Some of the victims I had met personally.

Spending so much time as an embedded filmmaker, I witnessed first-hand the daily struggles Tanzanians with albinism face: abandonment and domestic violence, rejection by their communities, and marginalisation from health and education services. I discovered how complex this picture is: killings are the horrific tip of an iceberg, the most visible facet of a deeper social problem.

The film set out to show that people with albinism are human, to teach communities that a person with albinism is just that: a person, no different to anyone else. Perhaps this explains the extraordinary global reaction to In the Shadow of the Sun: from Papua New Guinea to India to the United States, audiences worldwide could relate to Josephat and Vedastus in their quest for recognition and determination to belong. We’ve all felt different or have been labelled at some point in our lives, and I believe it was this that captured the hearts and resonated with so many viewers. The film became a testament to Josephat and Vedastus’ inner strength in the face of this violence, and has gone on to inspire people all over the world.

10 years on, the documentary has screened on television and in cinemas in 80 countries worldwide, and continues to discover new viewers each day. When I set out on the journey to make this film, I hoped it would raise awareness of the issue, but I never knew this cause would become such a big part of my life.  Coming face-to-face with these atrocities, filming this documentary, and witnessing its extraordinary global response led me to found Standing Voice, a UK- and Tanzanian-registered charity that exists to defend the rights of people with albinism in Africa.

To this day, I still work closely with the Ukerewe Albinism Society. Standing Voice recently completed construction of a training centre on the island, and many residents continue to benefit from our Health and Education Programmes.

If I compare the Ukerewe Island I first encountered ten years ago with the place I see today, the difference is incredible: huge strides have been made. But for every Ukerewe there are countless communities in dire need of help.

– How does Standing Voice act to improve the living condition of people with albinism in Tanzania?

Standing Voice was founded with the ethos of giving people with albinism the platform to speak back to their societies and reassert their presence and equality. The Standing Voice team has over 10 years’ experience working to promote the social inclusion of people with albinism in Tanzania and Africa more broadly.

Our work is concentrated in four programmatic areas: Health, Education, Advocacy, and Community. This holistic support currently reaches thousands of people with albinism across Tanzania, with a vision to expand into other sub-Saharan African countries at the request of civil society and government in the near future.

Under Health, our programmes in Skin Cancer Prevention and Vision deliver people with albinism in Tanzania with regular access to previously unavailable services, accessed in patients’ own communities and delivered by local, Tanzanian-trained experts and wider community members. We train and activate existing networks of dermatologists and optometrists to build in-country capacity, creating programmes that can have a lasting impact.

Through our Skin Cancer Prevention Programme, we have created the first network of regular skin cancer prevention clinics for people with albinism in Tanzania. Our clinics now operate at 28 locations across Northern and Western Tanzania, regularly screening the skin of thousands of people with albinism every 4 months. At every clinic, patients receive skin cancer screening; cryotherapy to remove pre-cancerous wounds (and antibiotics to prevent infection); sun protection education; and, if necessary, referral for emergency surgery. Patients also receive Kilimanjaro Sunscreen (KiliSun), a locally made sunscreen specifically designed for persons with albinism. Placing in-country stakeholders at the heart of service delivery, the programme is delivering structured dermatological health services to Tanzanians with albinism for the first time.

Our Vision Programme trains local optometrists to provide vision care and education to people with albinism across Tanzania. So far we have screened over 1,000 adults and children with albinism, distributing more than 3,500 vision devices. At our clinics, patients receive low vision screening; vision devices, including monocular telescopes and prescription glasses; and education about low vision. This programme creates the conditions for students to flourish in school, breaking the cycle of poor educational performance and unemployment tragically familiar among people with albinism in Tanzania. It deepens teachers’ understanding of albinism, arming them with the knowledge required to improve student care and combat bullying. The programme is supported in a 3-year partnership with the Essilor Vision Foundation, through its Vision For Life initiative.

Alongside Health, we work across Education, Advocacy, and Economic Empowerment. Our Education Scholarship Programme works with individuals and their families to enrol students in high-achieving schools where their needs can be targeted and abilities recognised. The programme covers tuition, scholastic materials, medical check-ups, and career advice. It also covers albinism-related training for teachers and school matrons, deepening their understanding of the condition to ensure long-term care for students. The programme operates at primary, secondary, and university level, forging role models and enabling children with albinism to grow up as leaders in society.

We also develop training and employment opportunities for Tanzanians with albinism; provide platforms for albinism community groups to amplify their advocacy through international events; facilitate the establishment of local support groups; and implement community education and outreach to raise awareness about albinism in rural areas where discrimination is rife. We have organised and presented at high-profile advocacy events with the World Bank, OHCHR (Office of the United Nations High Commissioner for Human Rights), UNIS (United Nations Information Service), UNHRC (United Nations Human Rights Council), the European Commission, and the Interregional Crime and Justice Institute.

People with albinism are their own route to a better future and this is key to the operational philosophy of Standing Voice. At the heart our work, we work alongside people with albinism, not for them, over them, or on their behalf. We empower individuals, families, communities, local associations, and health professionals to take ownership of this issue and deliver sustainable responses to it, because the answers to this crisis indisputably lie inside the communities and states in which we work. Together, we build models that can be adopted and replicated across the African continent, an approach that has received the endorsement of every stakeholder it has engaged.

Every day we see how social integration improves health and education, creates jobs, and builds stronger civil support networks to protect people with albinism from future persecution. As part of that process, our new partnership with the Pierre Fabre Foundation will advance the ability of people with albinism in Africa to reintegrate safely, to define themselves as more than victims of their condition, and to step out of the shadows, claiming a stake and a voice in societies from which so many of them are currently excluded.

– What is the origin of the partnership with the Fondation Pierre Fabre? What do you think about the Foundation’s approach?

When we received the Pierre Fabre Foundation call for proposals, we were immediately struck by how aligned it was with our own philosophy, and how well suited it was to our Skin Cancer Prevention Programme model.

Like Standing Voice, the Foundation’s work favours those who are most deprived, and people with albinism are among the most marginalised and vulnerable on Earth.

It’s been wonderfully refreshing to find a partner who shares our passion and vision for this cause; who views the skin cancer epidemic facing people with albinism as a priority; and who has ambitiously supported a project that is tackling these core issues head on, in some of the remotest parts of Africa.

Béatrice Garrette, Fondation Pierre Fabre Director General, Gérard Lorette, dermatologist and member of Fondation Pierre Fabre Scientific Comittee with the Standing Voice team in Tanzania

We are extremely proud of this new partnership with the Pierre Fabre Foundation. The funding and hands-on expertise the Foundation will bring to our work will enable our life-saving Skin Cancer Prevention Programme to expand, reaching thousands more people with albinism across Tanzania and Sub-Saharan Africa more widely.

– What are your main objectives and next steps for 2017?

Looking ahead to the rest of 2017, we have a number of really exciting project activities on the horizon.

During 2017, we will be continuing to expand the Skin Cancer Prevention Programme into new regions of Tanzania. In May, the programme will be launched in the Tabora region of Tanzania, where many people with albinism will receive sun protection education, sunscreen, and dermatological treatment for the first time. This expansion will save lives in some of Tanzania’s most remote locations.

This year, we will also launch our Ambassador Training Awards, which train community members, local CSOs, and in-country health professionals to become advocates in dermatological healthcare for people with albinism. The first training workshop will take place in Mwanza City in October.

In December 2016, we piloted the Skin Cancer Prevention Programme in Malawi. In March, we will present the findings from this pilot to the Pierre Fabre Foundation, with a view to fully operational replication in the Mangochi district of Malawi by October 2017.

This year will also see us continuing an exciting advocacy project designed to spark conversation in Tanzanian communities about the genetic origins of albinism. Funded by the Wellcome Trust, the project brings together scientists and artists from across Africa to showcase the science of albinism in a socially relatable way.

In June, Standing Voice will host our Summer Skills Workshop: a fortnight-long programme of training, seminars, and workshops supporting communities on Ukerewe Island, in the heart of Tanzania’s Lake Victoria. People with albinism and their families will come together to develop skills, build businesses, and celebrate one another’s differences. Children whose education we sponsor will also travel to Ukerewe to take part. These activities will take place at our recently built training centre, culminating in a special programme of events to celebrate International Albinism Awareness Day 2017!

Our other programmes in Vision Care, Education and Economic Empowerment continue to expand through partnerships with Vision For Life Essilor and the World Bank.

To learn more about Standing Voice visit www.standingvoice.org

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