CHALLENGING THE STEREOTYPES PEOPLE WITH ALBINISM FACE: INCLUSION BEGINS AT COMMUNITY LEVEL

By Morapedi Sibeko.

• ⁠For people with albinism, the stigma and discrimination must be replaced with dignity, respect, and inclusion.
• The Department of Social Development’s new policy, Social Development Services for People with Disabilities, awaiting cabinet approval, calls for disability inclusion and mainstreaming across all spheres of society.
• Inclusion requires dismantling myths, ending discrimination, and embracing the potential of every individual.

People with albinism often face stigma, discrimination, and the harmful practices rooted in myths and misinformation, yet it is a biological genetic condition that affects the production of melanin, resulting in lighter skin, hair, and eyes.
One of the most damaging myths is the false belief that the body parts of people with albinism bring luck. This has tragically cost lives and fuelled fear within families and communities.
These concerns are an everyday reality for many people with albinism. Families sometimes feel compelled to hide their children, fearing rejection or physical attacks. While the intention may be to protect, this act of hiding denies children the chance to be seen, to belong, and to participate fully in society.
These realities are personal to Ntsikie Loteni, a member of the National Albinism Task Force who is responsible for transformation at the University of Pretoria.
“Growing up, I often had to decide which way to walk to school so that I would not be called names,” she recalls.
Like many children with albinism, she had to navigate not only the classroom but also the social terrain of prejudice.

“I had to rely on other children to see or follow what the teacher was teaching,” she remembers, highlighting how visual impairments linked to albinism shaped her learning experience.
The White Paper on the Rights of Persons with Disabilities recognises albinism as a disability within the human rights framework. This is because many people with albinism live with varying degrees of visual impairment, which affects participation in education, employment, and other areas of daily life.
At the same time, they are more vulnerable to developing skin cancer because of reduced melanin, making access to sunscreen and protective clothing a matter of both health and dignity.

Changing attitudes

The real obstacle, Loteni emphasises, often resides in attitudes. “People question whether you are capable, even when you have the qualifications and skills. Policies are improving, but there is still a long way to go in ensuring they are implemented properly.
“Knowledge is power, and people must understand their rights. Information needs to reach communities at ground level.”
The Department of Social Development’s new policy, Social Development Services for People with Disabilities, which is awaiting Cabinet approval, builds on this foundation. It calls for disability inclusion and mainstreaming across all spheres of society. People with albinism must therefore be included in society and not marginalised.
However, perceptions must change; policy change alone is insufficient.

Loteni reflects on her life as a woman with albinism.

“There are times when people assume you do not have agency in your personal life. Some even feel entitled to make decisions for you, including in relationships. That sense of being denied a voice or choice is deeply disempowering.”

Her refusal to accept such treatment is why she describes herself as a voice that will not be silenced.
Harmful myths and a lack of awareness too often leave people with albinism feeling unsafe in the spaces that should provide belonging.
Changing this reality calls for everyday conversations that challenge stereotypes and create acceptance.

Educating communities

For Loteni, real inclusion begins at community level.
“We need conversations within our communities so that people understand albinism. As a person with albinism, I should not have to feel unsafe where I live. Community leaders have a role to play in building awareness and ensuring that people with albinism are involved in community programmes. We can do anything.”
Workplace exclusion remains another barrier.
Even when people with albinism have the skills and qualifications, inaccessible environments, biased recruitment practices, and limited awareness hold them back.
Loteni calls for greater inclusivity: “Accessibility, recruitment of people with disabilities, and disability sensitivity training are vital. Give people with albinism opportunities, and they will thrive.”
She stresses that creating platforms where people with disabilities can speak for themselves is another step towards lasting change.

Policies to stop discrimination

South Africa’s commitment to protecting against discrimination is not only expressed in its Constitution but also through the White Paper on the Rights of Persons with Disabilities and international obligations.
The country ratified the United Nations Convention on the Rights of Persons with Disabilities and the African Union Protocol on Human and Peoples’ Rights, including its Optional Protocol, in 2007.

By doing so, it joined the global community in recognising disability as both a human rights and a development issue. This means that people with albinism, like all people with disabilities, are entitled to equal protection before the law, dignity in everyday life, and opportunities for full inclusion in society.
Rejection is one of the burdens carried by people with albinism. It can take many forms, such as being sidelined in community life or even experiencing silence and distance within one’s own family. These experiences of exclusion not only isolate people but also erode their sense of belonging and self-worth.
As Loteni explains: “Whether through name-calling, exclusion, or silence at home, this rejection chips away at one’s sense of self. That is why mental wellness is not optional but fundamental to restoring dignity and enabling people with albinism to thrive.”

Circumstances do not define a future

Her journey has also taught her the importance of resilience.
For many young people with albinism, the path forward can feel uncertain, shaped by limited opportunities and lingering stereotypes.
Yet Loteni believes that one’s circumstances do not define one’s future.
Drawing from her own experiences, she shares a message of encouragement: “Any young person who feels they are disadvantaged, believe in who you are. You will have challenges, but that does not mean you will not succeed and be whoever you want to be.”
Her words remind us that albinism is not a curse, nor a condition that should relegate people to the margins of society. It is part of the human story.
Inclusion requires dismantling myths, ending discrimination, and embracing the dignity and potential of every individual.