Listen to the audio version of Nnene’s story (In English)
Nnene is from Akwa Ibom, a vibrant state in the South-South region of Nigeria. Akwa Ibom is famous for its natural beauty and cultural richness. It is abundant in mineral resources like petroleum and is home to many skilled traditional craftsmen. The area comprises three major tribes: the Ibibio, Annang, and Oro, and boasts large forests, making it a unique and cherished place for Nnene. But what makes her treasure this place the most is infrastructural development, especially the international sports stadium and worship center. The state’s culinary delights, such as Afang, Coconut Rice, Edika Ikong, and native Jollof Rice called “MTN” due to its yellow color, further enhance its appeal.
But Nnene and others like her living with albinism, do not always get to enjoy all this wondrous beauty because of the ‘silent killer(s)’ of African people with albinism: skin cancer.
As a child, her parents were overprotective, often forbidding her from playing outside with other children to protect her from the harsh sun rays and any discrimination. She recalls a painful memory: One sunny day on October 1st, her peers, seven to ten years old, planned to go to the stadium to partake in the Independence Day Celebrations. This time, Nnene decided to sneak out to watch the Independence Day march without any sun-protective gear such as long-sleeved clothing and a wide-brimmed hat. The young, curious, and patriotic Nnene suffered severe sunburns that left her in agony for months. It was at this precise moment that she was confronted, as a child, with the harsh reality of living with albinism and the true reasons for her parents’ protection against the sun.
The sun took a toll on my forehead, nose, hand, chin, all the parts the clothes did not cover. I went home crying. My parents ran to check on my sunburns and wondered, though they knew, what happened. I refused to admit the obvious, fearful of any consequent punishment for not listening to my parents.
If this was the first time Nnene was aware of climate implications on her life, later, it was only during adolescence that she began to be aware of health and social challenges linked to living with albinism.
Nnene faced discrimination and isolation in school due to vision difficulties. Indeed, vision impairment inherent to most forms of albinism is more pronounced in the sub-Saharan region, where Nigeria is located, due to the bright sunlight and limited access to healthcare (2023 study on albinism). Some students mocked her, while others refused to associate with her. Despite the stigma, supportive teachers provided their notes, which helped Nnene excel academically.
As she progressed to university, Nnene found more acceptance among her peers, who valued her intelligence and skills in subjects such as science & technical drawing. However, the real struggle began after graduation when her dream of joining the National Security Forces was repeatedly crushed due to her albinism. She applied almost ten times to be close to making it. At the very end of her Nigerian Navy Exam, one officer mockingly asked her if she saw among the applicants or in any of the national forces anyone like her (anyone with albinism). He asked her three times to leave the exam venue.
I stood my ground. I did not shake. I was ready to show him pepper. I was determined to finish my exam. When I submitted my papers, the officer tore my exam papers before my eyes.
He did this in front of all other finalists, shattering her hopes and highlighting the systemic discrimination people with albinism face.
Nnene’s story is not unique. In Nigeria, individuals with albinism are often stigmatized, labeled as witches, a curse, or a mermaid, and face social ostracism. The simple experience of taking public transport or seeking directions is fraught with rejection, fear, and insults, leading many, including Nnene, to prefer solitude and self-imposed isolation.
Did I make myself the way I am?”
The socioeconomic implications of health and social realities are compounded by climate change, which has exacerbated the challenges faced by people with albinism in Akwa Ibom, Nigeria, and beyond. Nnene’s region, heavily impacted by petroleum mining and pollution, experiences severe climate effects like acid rain and increased skin cancer rates. Indeed, the prevalence of skin cancer among young persons with albinism has reached alarming rates, claiming lives in their 20s and 30s with 3 to 5 deaths reported every six months (Tucker, 2024). Nnene recounts heartbreaking stories of friends with albinism suffering from skin cancer, expressing despair and resignation about their lives. The economic burden of protective measures, especially sunscreen, is prohibitively high, making it inaccessible to many.
A single bottle of sunscreen can cost between $10 USD and $35 USD, an unaffordable luxury for most people with albinism. If exposed to the sun, it is recommended to be applied every 2 hours. In Nigeria, many people with albinism hardly earn $35/month.
Nnene is aware of the increasingly frequent rise in UV rays caused by climate change and its impact on her life and community. She highlights the lack of centralized support for people with albinism and the dire need for health assistance for skin cancer prevention and treatment. Moreover, she emphasizes the need for concrete measures such as adaptive devices, copies of notes, and digital tools, as outlined in the Quick Guide for Educators. These measures are necessary to accommodate students with a visual impairment, otherwise hindering educational pursuits. The economic inequalities further compound these challenges, leaving many people with albinism struggling to compete and thrive in society.
If we are in good health and we are educated, we can navigate through society. We are brains that need to be molded, to be given a touch of enforcement so we can bloom and scale up our potential.
Despite these obstacles, Nnene remains resilient and determined to make a difference. Since the United Nations’ Convention on the Rights of People with Disabilities now offers protection for people with disabilities, including albinism, Nnene has become a passionate disability advocate.
Today, Nnene is a Special Assistant to the Governor on Persons with Disabilities in Akwa Ibom State. She is also the Founder of the Advocacy for Persons with Albinism Network (APAN), a national organization supporting over 200 members across Nigeria, and the co-founder of the Community of Persons with Disabilities in Akwa Ibom State.
In these roles, she emphasizes the importance of self-protection from skin cancer and discrimination, community support, and resilience in the face of climate change. Her advocacy work focuses on raising awareness about the unique needs of people with albinism and pushing for their inclusion in climate change discussions. Nnene also calls for systemic changes, such as integrating climate change education into primary school curricula and “making sunscreen available, accessible, and affordable as an essential medicine for persons with albinism.” Nnene supports this call on the World Health Organization (WHO) to re-add Sunscreen to the List of Essential Medicines and calls on everyone to support it by signing the petition here.
Nnene reflects on her journey and advises her younger self:
Run away from the sun as much as you can. Better yet, be sun-smart! Dress appropriately! Be very intentional about your skin. Protect it jealously and diligently.
Nnene envisions a better world where people with albinism have access to inclusive education and quality healthcare. Her dream is for all individuals with albinism to live without fear of sunburn, to be recognized and included in society, and to have their potential nurtured and developed.
Nnene’s story is one of resilience and hope. Her journey through climate and social challenges underscores the importance of recognizing and addressing the unique vulnerabilities of marginalized communities in the fight against climate change. Through her advocacy, Nnene is paving the way for a more inclusive and equitable future for all.
About Nnene Bassey
Nnene Bassey is a Nigerian human rights defender with albinism who serves as the Special Assistant to the Governor on Persons with Disabilities in Akwa Ibom State, Nigeria. She is the Founder of the Advocacy for Persons with Albinism Network (APAN) and Co-Founder of the Community of Persons with Disabilities in Akwa Ibom State. She advocates for self-protection from skin cancer, fights against discrimination, and raises awareness about the unique needs of people with albinism, emphasizing their inclusion in climate change discussions.
Call on the World Health Organization (WHO) to re-add Sunscreen to the Essential Medicines List
Click Here to Sign the Petition