This week, I witnessed a historic moment in human rights advocacy and empowerment: people with albinism from around the world unanimously voted to form a global alliance on albinism.
From January 26 to 28, civil society groups representing people with albinism from six continents gathered in Paris to lay the foundation for an international coalition to combat the attacks, stigmatization, and discrimination people with albinism – a relatively rare condition caused by a lack of melanin or pigmentation in the skin, hair, and eyes – face worldwide.
“[T]oday a fundamental step has been taken and a foundation has been laid for a new era for people with albinism worldwide, particularly where they need the most support,” said Ikponwosa Ero, the United Nations Independent Expert on Albinism and one of the organizers of the event. “We are not going to turn back now.”
Other advocates echoed this sentiment. Lei Xiao, a representative of the Chinese Organization for Albinism, told me, “The global alliance for albinism is very important because when we are separated in every part of the world, we are alone. But when we are united, we are stronger.”
A recent UN Independent Expert report showcased the range of human rights abuses people with albinism and their families endure, from physical and sexual violence to social exclusion and entrenched discrimination. In some regions in Africa, for example, people with albinism are mutilated or killed due to mistaken beliefs that their body parts can be used in witchcraft practices to bring good luck or fortune. Fear of attacks and stigma can limit access to even the most basic human rights, including education. A June 2019 Human Rights Watch report highlighted the discrimination and barriers to education faced by children with albinism in Mozambique.
The new alliance will undoubtedly encounter obstacles, particularly in designing specific responses to meet the variety of human rights challenges affecting people with albinism. But the advocates I met in Paris this week remain undeterred in their mission to prevent abuses against their communities and seek accountability for past violations. Now more than ever, people with albinism stand united in their common goal of equal rights and dignity.
To view a photo essay featuring images and quotes from some of the coalition members we spoke to, click here.
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