…Other challenges include low vision, discrimination, stigmatisation, segregation, leading to neglect, isolation
Dr. (Mrs) Bisi Bamishe, a seasoned journalist who has been in journalism practice for over 33 years is the President, Albinism Association of Nigeria. Bamishe, who is also a lecturer at the Nigerian Institute of Journalism (NIJ), Ogba, has a passion for engaging youths in entrepreneurship. In this interview with APPOLONIA ADEYEMI, she highlights some challenges impacting people living with albinism in Nigeria
When did you assume your role as president?
I became president three years ago, in 2021, following the association’s registration in 2019. My tenure ends in October this year.
Why did you choose to lead this association?
The association was established to provide a unified platform for persons with albinism to address their challenges. We wanted to counter the inequality, neglect, and misconceptions persons living with albinism face and advocate for principles of dignity, equality, and justice.
Through this association, we aim to raise awareness of albinism, reduce stigma, and improve the quality of life of our members.
Who is a person with albinism?
A person with albinism has inadequate melanin, the pigment responsible for coloring the skin, hair, and eyes. This condition results in lighter skin, blond hair, and bluish eyes. Albinism is also found in animals and plants, causing similar pigmentation deficiencies.
How does the environment affect people with albinism?
The sun is our greatest enemy because ultraviolet rays can damage our skin, leading to cancer. Climate change has worsened this risk. Tragically, we lose at least two members of our association every month to skin cancer. Last week, for instance, we lost someone in Lagos. Lack of proper care, awareness, and resources contribute to these losses.
What medical measures help manage albinism?
Albinism can be managed through preventive measures like using sunscreen, wearing protective clothing, and using hats and umbrellas when outdoors. Regular checkups with dermatologists are crucial for early detection and prevention of skin cancer.
However, sunscreen and medical care are expensive, making it challenging for many people with albinism to access proper care.
Are there other medical challenges faced by people with albinism?
Yes, low vision is another major issue. Melanin deficiency affects the eyes, leading to visual impairments. This adds to the challenges faced by people with albinism, as it impacts their daily lives and limits opportunities.
Are there enough personnel and equipment to manage albinism in Nigeria?
No, we don’t. Dermatologists are few, and healthcare facilities are under-resourced. For example, at the Lagos State University Teaching Hospital(LASUTH), skin clinic equipment sometimes becomes unusable due to lack of resources, such as gas for machines. The shortage of medical personnel, is also worsened by the “japa” syndrome, also makes access to care difficult.
What about the affordability of skincare products?
Sunscreens are expensive, costing between N2,500 and N15,000. Specialised creams like for wound healing cost up to N120,000 per tube. Many people with albinism can’t afford these products because they are often unemployed due to workplace discrimination.
How does employment discrimination affect people with albinism?
Discrimination is a significant barrier. Employers often assume we are incapable, so they refuse to hire us. Without jobs, many of our members can’t afford the care and products they need to maintain their health. This creates a vicious cycle of poverty and poor health.
What do you recommend to improve the lives of people with albinism?
We need more government support. Regular skin screenings at local government levels could help with early detection of skin cancer.
Subsidising the cost of sunscreen and other essential products would also make them more accessible. Additionally, creating job opportunities for people with albinism is crucial. Empowerment through employment would enable them to care for their health and lead better lives.
Albinism is simply a genetic condition, occurring only when both parents carry the gene
What role does public awareness play in addressing these challenges?
Public awareness is vital to dismantle stereotypes and discrimination. Many people with albinism face social isolation due to misconceptions about the condition. Education can promote acceptance and create a more inclusive society where people with albinism feel valued.
What is your association doing to address the issue of inadequate personnel?
We are advocating for the Federal Government to make it mandatory for federal teaching hospitals in all six geopolitical zones to provide free treatment for persons with albinism.
This would help reduce the death rate caused by skin cancer. We are also pushing for skin cancer to be included as one of the benefits under the National Health Insurance Scheme. Unfortunately, addressing the issue of inadequate personnel requires training and government action, which is beyond our direct control.
Is the death rate among people with albinism a nationwide issue?
Yes, the high death rate due to skin cancer affects people with albinism across the country.
What is the general reaction of Nigerians toward people with albinism?
The reaction is often negative. People with albinism face discrimination, stigmatisation, segregation, and cultural biases. Many see us as cursed or even ghosts.
There are stories of mothers being sent away from their homes after giving birth to children with albinism because of societal myths. However, albinism is simply a genetic condition, occurring only when both parents carry the gene.
What about cases of ritual targeting of persons with albinism in Nigeria?
Fortunately, ritual targeting is not a significant issue in Nigeria, unlike in some southeastern African countries like Mozambique and Malawi.
However, there are isolated cases of stigma, such as a community in eastern Nigeria that rejected a woman and her child with albinism.
While fears of rituals exist, like warnings to avoid cutting our hair in salons or being out at night, there is no widespread evidence of ritual killings in Nigeria.
What are the most challenging issues affecting persons with albinism in Nigeria?
The major challenges include; Low vision, Skin cancer, Discrimination, stigmatisation and societal myths and cultural biases lead to neglect and isolation.
Lack of trained personnel both in healthcare and education, there aren’t enough professionals trained to meet our needs. Educational barriers; teachers often fail to accommodate students with albinism, especially regarding low vision, leading to poor academic performance.
Low awareness and advocacy, public ignorance about albinism persists, and there is limited sensitisation to our challenges. Unemployment and poverty is another challenge. Unemployment limits opportunities, affecting our ability to afford proper care.
What steps is the association taking to address educational challenges?
We are working with the Federal Ministry of Education to train teachers to understand the special needs of students with albinism, particularly related to low vision. For example, teachers need to ensure these students sit at the front of the classroom and receive support.
What progress has the association made so far?
We have gradually gained government attention. For instance, we’ve engaged with the National Assembly’s committees on disability and basic education to seek support and recognition. This is just the beginning, and we hope to achieve more in the future.
Please follow and like us: