“People should understand that we are no less human. We have the ability to do what people with melanin can do. I feel bad when people pity us or see us as people with disability.”
Those were the words of Chimezie Udechukwu, who is one of the estimated two million persons with albinism (PWA) in Nigeria. He has been in the forefront of the campaign to correct the different misconceptions and stigmatisation that albinos face in the society.
He said he was always amazed when people spread unfounded information that albinos don’t eat salt, albinos don’t die, their urine brings riches, their blood cures the human immunodeficiency virus (HIV), and many other such fallacies.
These perceptions appeared to have made many albinos to live in their own world.
More information on albinos and albinism was served recently at a get-together in Amuwo Odofin area in Lagos to celebrate the fourth anniversary of Onome Akinlolu Majaro (OAM) Foundation. The event was an avenue to take a cursory look at what has positively changed in the last four years.
The persons with albinism, in their numbers, old and young, males and females, all attired in casual wear, stormed the venue of the in-house party. It was a day to dine and wine and to sing and dance.
Udechukwu, who is the director, Communications and Strategy at OAM Foundation, said that the need to change the narrative about albinism could not be overemphasised. He said it was imperative to keep sensitising Nigerians to the total make-up of every person with albinism so that the misconceptions surrounding it could be corrected.
He said that the NGO’s campaign has given new hope to many albinos. He revealed that there were many of them who had contemplated committing suicide but rescinded after encounters with the foundation. He said tens of thousands persons have been positively affected.
“I am proud of my identity as a person with albinism and I want people to come out of their shells. They need to know that their creation is neither an incomplete one nor done by mistake. We are not different from people who have melanin; we are all first human beings. And people are now coming up to live freely. The Federal Government has recognised our works and invited us for a discussion, which I believe led to a policy to recognise persons living with albinism though it is encapsulated in the Disability Bill.
“We have given out over 500 free eye glasses to persons with albinism and done over 1, 000 eye screenings. About two million naira has been expended on scholarship in the last few years. We have empowered thousands of people. The awareness alone that we have carried out cannot be quantified. Many other African countries now look up to us because we and other albinism-related organisations have been vocal in correcting all the myths surrounding albinism.
“In the past, parents were not willingly to send their children with albinism to school because of how they would be treated. Albinos used to lock themselves indoors. But now the story is changing gradually, though there is still much to be done,” he said.
Udechukwu said despite the massive campaigns, there was still a sort of stereotype attached to people with albinism, which he said would take longer time to eradicate. He said that people still believe that albinos don’t eat salt at all, which he countered.
He lamented that due to inadequate enlightenment, persons with albinism, particularly in Africa, have been subjected to various types of inhuman treatment, discrimination from jobs, education, and social activities, and in some extreme cases targeted for rituals in some environments, especially in Southern and Eastern Africa.
He advised parents and other family members to treat persons with albinism with unhindered and equal love with other children. He warned that isolating them usually leads to depression and suicide as it has been recorded in the past across Nigeria.
“We do not engage in pity parties. We believe in hard work and the place of love in our daily lives. Hence, our approach has won us several recognitions, including the ‘Difference Maker in Albinism Advocacy Award’ by the Rotaract District 9110, Nigeria in 2017. We were also invited by the Federal Ministry of Education to review the draft Policy on Albinism.
“Only recently, we got an invitation from the United Nations independent expert on the enjoyments of rights of persons with albinism through the Global Albinism Alliance for an exploratory meeting in Paris in 2020,” the spokesperson said.
A co-founder of OAM foundation, Mr Akinlolu Majaro told Daily Sun that he was doing the charity works as a way of showing little kindness to these groups of people.
On what informed the establishment of the foundation, he said he noticed that there were lots of discriminations against albinos in the society.
“Although the discrimination might not be as loud as other forms of discriminations, we want to make people understand that everybody is human despite the variation in colour. We are not doing it for popularity.
“Ninety per cent of what we have spent so far is from our pockets. But we have realised that we need to touch more lives. We are not doing it because we want anything from the people we helped but simply as the right thing to do,” he said.
On how to overcome some of the challenges still being faced by persons with albinism, another co-founder of the foundation, Mrs Onome Okagbare Majaro called for continuous discussions on issues ranging from employability, healthy living, self-esteem and sexuality.
Said she: “Interestingly, people find it difficult to believe that we are discriminated against. How many persons with albinism are doing well in school? For you to do well in the class, the teacher must understand that you don’t see as clearly as other students and that you must sit close to the writing board.
“We hope to spread love to more people. Only today, we gave out about 30 eyeglasses to persons with albinism. Above all, love is the key. My parents explained everything that l needed to know about albinism while I was growing up. They taught me to be self-confident.
“We granted scholarship to Miss. Udochukwu Divine, a PWA child, now attending Young Nation Nursery/Primary School, Lagos. This scholarship has been on since 2017. We also granted university scholarship to Mr Victor Kalu, a PWA, who is now in 200 level at the University of Lagos (UNILAG).
“We have trained Miss. Rachael Fatai, and Yemisi Oduniyi in cake baking. OAM paid fully for their classes, transportation and learning materials. Rachael is now employed at a bakery while Yemisi has started her own business. In 2017, we carried out comprehensive eye tests and donation of medicated eye lenses to beneficiaries at the Lagos University Teaching Hospital (LUTH), ldi Araba.”
Albinism, in any of its forms, is the result of heritable mutations that lead to defective melanocytes, unable to properly synthesise melanin and to distribute it through dermal tissues, making persons with albinism vulnerable to the harmful effect of the ultra-violet rays (UVR) from the sun.
Odechukwu added: “At OAM Foundation, we are passionately committed to ending discrimination against people living with albinism and to promote their wellbeing.
“In 2016, we partnered with the Lagos chapter of the Albino Foundation to organise a sensitisation programme with the theme ‘Albinism and the Society.’ This year, we were invited by the Open Society Initiative for West Africa (OSIWA) to participate in the capacity building on human rights for advocates of the rights of persons with albinism in West Africa, held in Dakar, Senegal
“Since inception, we have expended over N10 million in our operations. However, we are open to donations in our quest to reach more PWAs in our quest to change the narrative about living with albinism in Nigeria and beyond.”