LOOKING BACK ON 2018

Por Standing Voice

20 de December de 2018

Friends and Supporters,

2018 has been a time to remember for Standing Voice. In a year that has marked our fifth anniversary, it’s been extraordinary to reflect on the progress we've made, and humbling to think about the support we've received.

As I write this message, our team is hard at work in the field, fighting to end discrimination and violence against people with albinism 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 Skin Cancer Prevention Programme is directly confronting the single biggest cause of death for people with albinism in Africa.

This year we’ve watched our Skin Cancer Prevention Programme blossom into a powerful mechanism of change. In its infancy, the programme was serving only three locations in Mwanza city; it’s now reaching over 5,000 people at 49 sites nationwide. The programme has now been fully piloted in Malawi too, and we’ve begun providing consultancy support to albinism societies across the continent who are seeking to replicate the model. All this and more was documented this year in Surviving the Sun, a short film commissioned by our partner the Pierre Fabre Foundation, which explores the impact of the Skin Cancer Prevention Programme through the eyes of one woman and her family.

Similar strides have been taken in our Vision Programme, which is now reaching over 2,000 people with albinism through a comprehensive package of eye care and education. Truly remarkable this year has been our progress in optometric and teacher training: we have continued to recruit and train new optometrists in Tanzania, under the expert leadership of our clinical director Dr Rebecca Kammer. We have also trained over 100 teachers to monitor and promote the welfare of children with albinism in schools, and teamed up with the universities of Lancaster, Coventry and Worcester to launch a guide on albinism for teachers in Tanzania. This resource has already begun to be distributed, and will be rolled out nationwide in 2019.

This year we were delighted to be able to deliver our second annual Summer Skills Workshop: an integrated training programme, based at our Umoja Training Centre on Ukerewe Island, helping the community to develop new skills and pursue income-generating opportunities. We brought together renowned artists, actors, researchers, broadcasters, photographers, tailors and musicians, and connected these professionals to people with albinism and their peers. Over a period of two weeks, 85 participants were trained across eight workshop disciplines.

These workshops were preceded by an intensive period of renovation at our training centre. UK-based designers partnered with local carpenters to renovate the centre’s new community library. Here and elsewhere across the site, celebrated artist Camille Walala injected her trademark burst of colour, adorning the library, radio suite, water tanks and external façades with beautiful murals and geometrical patterns.

This year we have worked beyond national borders to seek greater protections for the rights of people with albinism across Africa and the world. Visiting South Africa, Uganda, Namibia, the Gambia and Switzerland, we have deepened our engagement with a number of African governments, and worked more closely than ever with the United Nations and African Union to pool intelligence on current human rights abuses and issue recommendations for their future prevention. With the UN and other key partners, we’ve built a Regional Action Plan on Albinism: an index of interventions being made, but also a roadmap, and a call to arms, in the coordination of future efforts. With this document, we will all wield greater influence in the fight to secure greater accountability for the welfare of people with albinism at the highest levels.

Even more profound has been the transformation in people’s attitudes in Tanzania. This year we’ve gone deep into the most isolated communities to build understanding of albinism and erode the poison of stigma. We've teamed up with Clowns Without Borders to deliver interactive performances and games in schools, reaching thousands of children with the life-changing tonic of laughter. We've also distributed thousands of copies of Moon, Shining Bright!, a children’s picture-book about albinism authored by Dutch illustration collective Happy Made By. A vibrant and positive story about a young girl with albinism, the book is a powerful tool to sensitise young audiences, fighting stigma and subverting harmful beliefs before they can take root.

Across all of these projects, perceptions of albinism are being transformed. We’ve seen a stream of triumphs, material and symbolic, attesting to the tenacity and resilience of people with albinism, who have fought their way into a spectrum of industries from beauty and entertainment to public health, human rights law, diplomacy and government. In September, six African women with albinism set their sights on Mount Kilimanjaro: a climb that proved to everyone within and beyond this field that the trauma inflicted on people with albinism will never be equal to their strength.

As we celebrate our achievements in 2018, I salute the bravery of our beneficiaries, who fight stigma every day, and our partners who work tirelessly alongside them. It is with great pride that I dedicate this message to everybody within the growing family of Standing Voice.