By Bradley Nandasaba and David Otieno
When one first hears of Sherleen Tunai Lumumba, 28, conjures the image of a larger-than-life individual. Sherleen, who lives with albinism, has curved a niche for herself as a fearless advocate challenging stigma, championing disability rights and pushing for climate justice across Kenya.
A young woman determined to redefine what inclusion, dignity and opportunity mean for persons living with albinism. However, when she sauntered through the gates their home in Eka Holiday village in Malava sub county, we came face to face with a petite, soft spoken young woman who looks like she’s fresh from a junior high school class.
But looks can be deceiving. Behind her calm presence, is a determined champion for disability rights, climate justice and youth leadership.
As the Executive Director of Ana-Antami, a non-profit organization that empowers persons with albinism, Shirleen has dedicated her life to ensuring that no one is denied dignity because of how they look.
Isolation, stigma, curious stares and whispered comments are realities many persons living with albinism face every day. But for Sherleen, identity is about far more than skin colour. She speaks passionately about dignity, climate justice, youth leadership, inclusion and building a future where people in rural communities can live meaningful and dignified lives.
Unlike many advocates, her vision extends beyond awareness campaigns. “Dignity should be intentional. It should not be something people give you because if someone gives you something, they can take it back. It should be guaranteed,” she says.
For Sherleen, those words are more than a belief. They are a challenge to societies that continue to treat inclusion as an act of generosity rather than a matter of justice.
Over the years, she has witnessed how easily persons living with albinism can be pushed to the margins, not because of their abilities but because of misconceptions and prejudice.
“I do not want people to look at me and only see albinism,” she says. “I want them to see a leader, a professional and a young woman with dreams, ideas and the ability to contribute to society.”
Her advocacy is rooted in the conviction that every individual deserves the opportunity to reach their full potential.
“Everyone deserves an equal opportunity to thrive. We should not have to prove our humanity before we are treated with respect.”
That conviction eventually inspired her to establish Ana-antami, an Arabic phrase meaning “I belong.”
Officially registered in 2024, the organization promotes self-acceptance, economic empowerment, climate action and inclusion among persons living with albinism.
The journey to creating the organization, however, began long before its registration.
Growing up with albinism was not easy. Sherleen remembers being chased by other children, pelted with stones and subjected to hurtful insults. The experiences often left her feeling isolated and alone.
Yet adversity also shaped unexpected strengths. “My father bought me dolls and I started dressing them and sewing small things for them,” she recalls.
What began as childhood play gradually evolved into a passion for fashion, weaving, crocheting and design. Today, fashion remains one of her strongest interests and an important tool in her advocacy work.
For Sherleen, clothing is not simply about style. “Clothes should consider UV protection and sustainability,” she explains.
For people living with albinism, prolonged exposure to sunlight significantly increases the risk of severe skin damage and skin cancer. Fashion, therefore, becomes more than self-expression. It becomes protection, confidence and identity.
Long before she found her voice in advocacy halls and policy discussions, Sherleen found something even more important at home – a place where she did not have to explain herself. In a world quick to point out her differences, her father quietly refused to see them as limitations.
He held her to the same standards as every other child, expecting her to dream, achieve and belong without qualification. While others sometimes saw albinism first, he saw only his daughter.
“He gave me a level playing field. Whatever expectations he had for other children, he expected from me too. That support became the foundation of my resilience,” she says.
His belief became a shelter against the storms beyond their doorstep. It taught her that worth is not determined by how others perceive you but by how firmly you stand in your own identity. Although she knew she was different, she never felt diminished in his presence. “Around him, there was no difference at all.”
“What was missing was self-acceptance. I met people who had survived the same discrimination and exclusion, but the deepest wounds were often invisible. Many had spent years believing the negative things society said about them. I realized that before we could change systems, we had to rebuild confidence and self-worth,” said Sherleen.
Those lessons stayed with her long after childhood. They became the quiet compass guiding her into classrooms, boardrooms and public spaces that were not always welcoming. Where others might have retreated, she learned to take her place with confidence.
“I learned to place myself in spaces because of my life,” she says. And so, step by step, she entered rooms that were not built with her in mind, carrying with her the certainty first planted at home, that she belonged there just as much as anyone else.
A turning point came when she met other persons living with albinism and discovered that many faced challenges far greater than her own. Some lacked family support. Others struggled with representation, employment and access to opportunities.
“What was missing was self-acceptance. I met people who had survived the same discrimination and exclusion, but the deepest wounds were often invisible. Many had spent years believing the negative things society said about them. I realized that before we could change systems, we had to rebuild confidence and self-worth,” said Sherleen.
She added: “You have to bring back all the memories and go through them. It is painful because you relive the rejection, the loneliness and the moments that hurt you most. But healing comes when you confront those experiences, understand them and finally refuse to let them define who you are.”
The process forced her to confront painful experiences she had long buried. It also strengthened her belief that advocacy begins with speaking openly about difficult realities.
“If I do not open my mouth and let the words flow out respectfully, people will not know.”
That belief followed her into university.
Because albinism often affects vision, Sherleen frequently sat alone in lecture halls so she could see presentation screens and classroom materials more clearly. Some students misunderstood her isolation and developed misconceptions about her.
Rather than remain silent, she chose to educate them.
During one of the lectures, she interrupted the class and spent nearly 30 minutes explaining albinism to her classmates.
“After that, I did not care what they thought. But I had already said it out.”
The experience reinforced her determination to challenge ignorance wherever she encountered it.
Today, Ana-antami’s work extends across Kakamega, Vihiga, Kisumu, Siaya, Nairobi, Machakos, Makueni and Malindi.
Unlike many organizations that focus primarily on aid distribution, the organization combines climate action with sustainable livelihood programs.
The connection between climate change and albinism is not always obvious, but Shirleen says it is impossible to ignore.
As discussions around climate change grow louder globally, she worries about the communities whose voices remain absent from the conversation.
“Climate justice is about people,” she says. “It is about the farmer whose crops fail because the rains do not come. It is about the child who goes to bed hungry. It is about communities that contribute the least to climate change but suffer the most from its consequences.”
Many persons with albinism, she explains, turn to farming after dropping out of school or struggling to secure employment. Yet farming often requires spending long hours under intense sunlight, exposing them to dangerous levels of ultraviolet radiation.
The challenge became painfully personal when one of the organization’s beneficiaries died from complications linked to UV exposure after previously recovering from skin cancer.
The tragedy forced Ana-antami to rethink its approach.
Rather than focusing solely on distributing sunscreen, the organization introduced indoor oyster mushroom farming as a safer and more sustainable source of income.
Beneficiaries receive training in mushroom production, drying, packaging and market access through cooperative networks.
“It is not enough to just give people sunscreen,” Shirleen says.
For her, meaningful advocacy must go beyond temporary interventions.
It must create practical and lasting solutions.
Her work has also expanded into governance and youth leadership.
Recently appointed to the Youth Parliament of Kenya under the International Relations and Diaspora Affairs docket, she hopes to connect young Kenyans with opportunities across Africa.
She believes the continent’s future depends on young people actively engaging in leadership, politics and economic development.
“Young people are not leaders of tomorrow. We are leaders today. The challenges we are facing are happening now, and our voices must be part of the solutions.”
She also contributed to the development of Kenya’s National Policy for Persons with Albinism through the Kenya National Commission on Human Rights.
While she acknowledges progress, she remains critical of what she describes as performative inclusion. “Organizations think writing policies alone creates inclusivity.”
For Sherleen, genuine inclusion means ensuring that persons with disabilities participate fully in mainstream conversations and decision-making spaces. “Let persons with disabilities sit with everyone else and discuss the same topics. That is real inclusivity.”
