Raising Our Voices

International Advocacy in 2019

By Standing Voice

July 31^st, 2019

2019 has seen a marked escalation in our efforts to increase global awareness of the human rights violations facing people with albinism in Africa. We have used a number of platforms within and beyond Africa to call international attention to the challenges facing this population in Tanzania, Malawi and elsewhere across the continent. The sustained and intensive advocacy done by Standing Voice and its partners has led a number of African governments to formally recognise the needs of people with albinism, and take greater responsibility for the fulfilment of their rights.

In March, we were delighted to host a screening of the acclaimed BBC Two documentary Born Too White at the U.S. Embassy in Lilongwe, Malawi. Facilitated by Standing Voice, the film follows Oscar Duke, a British doctor with albinism, as he travels to Tanzania and Malawi to visit our project sites and see what life is like for people who share his condition. Following the screening, a Q&A was led by three representatives of Standing Voice: Harry Freeland, our Executive Director; Bonface Massah, our Country Director in Malawi; and Sam Clarke, our Communications Manager. The documentary was thoroughly well-received by the audience, which included an assortment of government representatives, diplomatic officials and media personnel.

This year has also seen Standing Voice begin to exercise our UN Special Consultative Status, which was awarded to our charity last year by the UN Economic and Social Council in recognition of our unique expertise in the field of albinism in Africa. This status enables Standing Voice to attend and hold events at the UN, and provides an avenue for us to participate directly in the compilation of UN reports and intelligence gathering: an opportunity we have employed already through participation in the 40th Session of the Human Rights Council in Geneva in March, and the Conference of States Parties to the Convention on the Rights of Persons with Disabilities, a major disability rights conference at the UN Headquarters in New York City, in June. At both events, we were delighted to be working closely with Ikponwosa Ero, the UN Independent Expert on the Enjoyment of Human Rights by Persons with Albinism.

In Geneva, IK launched her latest report, focusing particularly on access to justice for persons with albinism and their families in countries across Africa and beyond. We were pleased to engage with Ms Ero’s report and endorse its findings in our own submission to the Council, which was circulated across the UN system.

In New York, we were honoured to attend an extensive programme of advocacy events, culminating with the celebration of International Albinism Awareness Day on June 13. The Conference of States Parties to the Convention on the Rights of Persons with Disabilities (CRPD) provided an opportunity for a spectrum of disability experts—academics and researchers, advocates, state and civil society representatives—to convene and share best practices in the realisation of the CRPD. Standing Voice was delighted to connect with this diversity of partners, and share our own perspectives and experiences by delivering a formal address in the conference’s main debate session. In particular, we were excited to partake in a special side event on the human rights challenges facing people with albinism, organised principally by the UN Independent Expert in commemoration of International Albinism Awareness Day. This event included contributions from high-profile advocates and was followed by the launch of a brand new beauty campaign featuring models with albinism at Times Square. This in turn was followed by an open-mic event at the offices of the Open Society Foundations and an evening reception at the NYDG Foundation.