I have rarely been as moved as I was during a series of workshops in my native Zimbabwe last year.
The workshops, which I organised with my team at O’Neill Institute for National and Global Health Law at Georgetown University in collaboration with several local organisations, explored the obstacles that persons with albinism experience not only in Zimbabwe, but across Africa. We heard searing testimonies from 73 individuals, which included people with albinism and caregivers and guardians of children with albinism.
“When I gave birth to my son, people in the community said I had sinned and that is why I gave birth to a child with albinism,” said a mother during one of the sessions. “People in my church would continually ask me, ‘How do you accept the birth of such a child?’ People told me there was a curse on my family for giving birth to such a child and that I should confess my sins because this was not normal. People told me, ‘Do not let your child pass near my house.’”
People with albinism are society’s “other”, subject to a “set of dynamics, processes and structures that engender marginality and persistent inequality” for nothing other than being born with a non-contagious genetic condition that results in a lack of melanin in the skin, hair and eyes.
They endure social stigma and discrimination. They are denied access to services including education, employment, housing, and healthcare (the latter of special concern owing to the predisposition of people with albinism to visual impairment and skin cancer). They suffer from psychological trauma and live materially impoverished lives on the margins of society.
People with albinism are subject to violence, ritual killings, and abduction, victims of the superstitious belief that their body parts bring wealth or magical powers. Women and girls with albinism are at great risk of sexual and gender-based violence owing to the myth that sex with a person with albinism cures HIV.
Raising awareness
It is vital that all people of good will come together to raise awareness, strengthen laws, and protect the rights of people with albinism.
Our guiding spirit can be the landmark court decision that was announced on 5 February 2025.
On that day, the African Court on Human and Peoples’ Rights issued a comprehensive ruling determining that the United Republic of Tanzania was liable for its failure to protect people with albinism from a wide array of human rights violations.
The court ordered Tanzania to initiate a number of reparations and reforms on behalf of people with albinism, including strengthening legal protections against violence and discrimination; establishing a compensation fund for victims of attacks; improving access to education, healthcare, and child protection services; implementing a national action plan to protect persons with albinism; and initiating awareness-raising campaigns to combat myths and superstitions about albinism.
As Muluka-Anne Miti-Drummond, the UN’s independent expert on the enjoyment of human rights by persons with albinism, said: “The decision is an important milestone in the ongoing efforts to enforce the human rights of persons with albinism, and the case presented the African Court with a unique opportunity to generate an important precedent in relation to state obligations regarding the human rights of persons with albinism in Africa.”
We at the O’Neill Institute, in partnership with the albinism advocacy organisation Under The Same Sun and the UN Independent Expert, presented an amicus curiae brief to the court that brought attention to violations of critical social and economic rights, including the right to health with a focus on the importance of access to treatment and prevention services for skin cancer.
Pernicious role of climate change
Our brief described the pernicious role of climate change in harming people with albinism, who lack adequate access to sunscreen lotion, preventive screening, and treatment services.
While the ruling addresses the facts of the Tanzania case, it offers guiding jurisprudence for all African countries on their obligations to protect the wellbeing and health of persons with albinism. We must demand that other countries adhere to the precedent set by the court.
I hope that the court’s judgment will cause the winds of change to sweep across the continent in support of the human rights of people with albinism. But I know that there is still work to be done.
We should all be as brave as the young woman with albinism who spoke during one of our workshops in Zimbabwe.
“When I walk in public, people are always name calling,” she said. “I remember once wishing that God would change my skin color. But I decided that instead of looking down on myself, I would be the best and most successful version of myself.” DM