Inclusion is strength
Young people with albinism call for acceptance
Albinism affects 1 in 5,000 to 15,000 people in Africa. Albinism is a rare condition that commonly results in the lack of melanin pigment in the hair, skin and eyes, causing vulnerability to sun exposure. Because of superstition that the body parts of someone with albinism can bring wealth and other benefits, many persons with albinism have been kidnapped, mutilated, and killed.
To raise awareness of the rights of persons with albinism, the UN adopted 13 June as International Albinism Awareness Day. This year the theme is ‘Inclusion is strength’ – ensuring the inclusion of the voices of persons with albinism in all sectors of life, including decision-making.
UNICEF had a chance to speak with three youth advocates with albinism from Kenya, South Africa and Malawi to get their thoughts.
Paul Butita, Kenya
Paul Butita is from Nairobi, Kenya. Growing up as a child with albinism was not easy as he was raised in the slums of Mathare where there were many misconceptions about albinism.
“My mother had to be extra careful and overprotective.”
He explains that young persons with albinism face barriers to higher education and employment, inadequate access to protective gear like sunscreen, and to assistive devices like eyeglasses. The government should establish supportive mechanisms and laws that protect persons with albinism.
“I encourage young people who want to be advocates or steer the wheel of advocacy, but they should know advocacy is not easy as it requires boldness, persistence, sacrifice and good will.”
Hlobisile Masinga, South Africa
Hlobisile Masinga is from South Africa and identifies as queer.
“I face both homophobia and discrimination because I have albinism. I have also experienced discrimination from the gay community. I have heard comments like ‘But you have albinism, how are you gay?’”
Hlobisile decided to establish The Pink Roses Foundation with a vision to create a more inclusive society for all young people, regardless of gender identity and disability.
“I realized that I didn’t have to choose my identity. It was up to me to create a space where everyone like me would feel welcome and accepted. We need to embrace our incredible diversity as Africans in all ways.”
Naomi Muhamba, Malawi
Naomi Muhamba is from Malawi. Both Naomi and her older brother were born with albinism. Their mother told them that school is the only legacy she would give them, which made Naomi and her brother study hard. Today Naomi is a social worker and an advocate for the rights of persons with disabilities.
“To my fellow youths, the sky is the limit, let us grind until everyone is treated equally and with dignity.”
In response to calls from civil society to address the violence persons with albinism experience, the UN appointed an Independent Expert to monitor and promote the rights of persons with albinism. In Eastern and Southern Africa, the Independent Expert Ms. Muluka-Anne Miti-Drummond and her predecessor Ms. Ikponwosa Ero have paid country visits to Mozambique, Tanzania, Malawi, South Africa, Kenya and Madagascar. All countries have taken steps to protect persons with albinism from attacks, but much more remains to be done.
The AU has adopted a Plan of Action on Ending Attacks and Discrimination against Persons with albinism (2021 to 2031). The Plan of Action recognizes that it requires various government ministries, civil society actors, including persons with albinism, the media, and other stakeholders to adequately ensure the full enjoyment of rights by persons with albinism.
“I therefore expect governments throughout Africa to take this Plan of Action and adopt it at the national level through the development of national action plans on albinism. These action plans will also need to be fully supported with a budget to ensure they are effective.”
When asked what her advice is to young advocates, Ms. Muluka-Anne Miti-Drummond recognizes that many persons with albinism work on the issues concerning albinism without much knowledge of human rights.
“I would recommend that young human rights defenders (HRDs) increase their knowledge and understanding of human rights to enable them to better demand their rights. Connecting with organizations working to support the work of HRDs will also help them build their capacity and resilience to adequately advocate for their rights.”
UNICEF’s mandate is to ensure special protection for the most disadvantaged children, including children and young persons with albinism. This includes targeted measures to ensure a protective environment and quality services for those experiencing violations of their rights.
In Eastern and Southern Africa, UNICEF has been working with local partners and communities for years to change attitudes and behaviors towards persons with albinism and protect them from violence.