International Albinism Awareness Day 2017

International Albinism Awareness Day 2017

On June 13 , on an island deep in the heart of Tanzania’s Lake Victoria, Standing Voice celebrated International Albinism Awareness Day alongside a community we have known for more than a decade.

Over a period of 7 days, volunteers from across the world travelled to Ukerewe Island to deliver a series of workshops for people with albinism and their friends, companions, and communities. From tailoring to photography, broadcasting to art, and printing to performance, participants were exposed to a range of disciplines and trades, building skills and confidence and establishing new enterprises.

The Summer Skills Workshop culminated on International Albinism Awareness Day with an exhibition of participants’ work in the main hall of the Umoja Training Centre. All participants congregated with their families and neighbours for a celebratory march through the streets of Ukerewe. Local schools were invited to participate, preparing songs and dances. Media and government representatives from across Ukerewe travelled to the Umoja Training Centre to observe proceedings, with the District Commissioner providing a welcome note to mark the occasion. Throughout the performances and exhibitions, people with albinism and their peers stood shoulder to shoulder in a celebration of diversity, unity, resilience, and love.

While some members of the Standing Voice team were celebrating International Albinism Awareness Day on Ukerewe Island, in London the rest of the team were keeping themselves just as busy. On the 12th and 13th of June, Standing Voice presented at the inaugural London Symposium on Albinism in Africa at the University of Westminster, hosted by the Josephat Torner Foundation Europe. The two-day event brought together experts, activists, and organisers to share their success and plan collaborative efforts for further progress. The symposium also provided an opportunity to catch up with two individuals who have been part of the Standing Voice story: Josephat Torner, activist and star of BBC feature documentary In the Shadow of the Sun; and Dr Oscar Duke, a TV presenter and NHS doctor with albinism who worked with Standing Voice to front the recent BBC documentary Born Too White.

The event allowed stakeholders to discuss their strategies for tackling the systemic and institutionalised discrimination still suffered by people with albinism across East Africa. Jon Beale, Standing Voice’s Managing Director, took to the podium to highlight our community-based advocacy work, which has recently included pop-up interactive community performances aimed at encouraging organic changes to the prejudices surrounding albinism. Jon also outlined some of our long-standing interventions, such as the Skin Cancer Prevention Programme, which has achieved success by working with an array of stakeholders to build collective capacity and mutual accountability.

A contribution from Precious Ngwu, who discussed her experiences of raising a child with albinism in the UK, provided a sobering reminder that prejudice is a problem not solely limited to Africa. Precious, who became a single parent after being rejected by her partner following the birth of her child, now works to eliminate stigma among the African community in London through the migrant youth-led movement Stand Up Stand Out. Other attendees included Ikponwosa Ero, the UN Independent Expert on Albinism and a vocal supporter of Standing Voice; Jake Epelle, founder of the Albino Foundation in Nigeria; Dr Patricia Lund, a professor at Coventry University and partner of Standing Voice; and Christian Tdjo, whose immigration to the UK was facilitated through our specialist legal support.

The week after the symposium, Standing Voice attended the launch event for Waiting to Disappear, an investigative report compiled by the International Bar Association (IBA) to determine and monitor stakeholders' obligations to promote the rights of people with albinism in Africa. Standing Voice provided a selection of powerful images from the field for a special photo exhibition that accompanied the launch. Outlining regional and international standards for the defence of these rights, the launch instigated important discussion of state responses to the persecution of people with albinism. Participants reflected on the report's potential as a resource to strengthen local advocacy, and a lobbying tool to hold governments to account.

We would like to offer our sincere thanks to the Josephat Torner Foundation Europe, the BME staff network and the Department of Politics and International Relations at the University of Westminster for facilitating the London Symposium on Albinism in Africa; and to the International Bar Association for compiling and sharing its debut report on this issue. Standing Voice was delighted to contribute to these thought-provoking events.

To all of our partners and supporters: thank you for joining in our global celebrations of International Albinism Awareness Day, and thank you for your commitment to defending the rights of people with albinism worldwide. We look forward to next year’s celebrations!

All images credited to International Bar Association 2017, Josh Beattie, Harry Freeland, Dee Yawetz and Josephat Torner Foundation Europe. Go here for a full list of credits.

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