By Chioma Obinna
As Nigeria on Sunday joined the rest of the world to mark this year’s World Albinism Day with the theme, “Strength Beyond All Odds”, Onome Akinlolu Majaro Foundation, OAM and the Lagos State Office for Disability Affairs, LASODA have decried stigma and discrimination associated with albinism despite the growing awareness on the condition.
Speaking at an event to mark the day organised by the OAM Foundation in partnership with LASODA, Co-founder, OAM, Mrs Onome Okagbare Majaro said stigma and discrimination were still on the rise leading to low self-esteem among Persons With Albinism, PWA.
Onome regretted the inability of parents to afford basic things albinos need for survival saying a lot of myths and misconceptions about albinism exist, such as that PWAs don’t eat salt, don’t get married, only see at night, that their blood and body parts can cure HIV and AIDS, among others. These have made PWA to be hunted like animals in East Africa.
Onome said although albinism is a genetic condition that affects people throughout the world, regardless of race, ethnicity or gender, tragically, those affected continue to suffer widespread discrimination, stigma, and social exclusion.
“Very many, including children and women, are extremely vulnerable, isolated and subject to abuse and violence. The endorsement of a Regional Action Plan on Albinism in Africa by the African Commission on Human and People’s Rights as well as by the Pan African Parliament is a key step forward”
She said six years after, Foundation has been able to galvanise more PWAs to rise and shine, be proud of their complexion and see beyond the complexion.
“Since 2015, the Foundation has spent millions in helping thousands of PWAs both directly and indirectly to become the best version of themselves.
From empowerment, education, awareness, confidence building, provision of sunscreen and medicated sunglasses to organising several for on issues concerning PWAs, we have invested in improving a lot of many and our records show. Since the pandemic started in 2020, our interventions have reduced since 100 per cent of our funding comes from the founders.
This has impeded the extent of our impact in the area of empowerment and scholarships, but we have remained resolute in social campaigns. We are open to external donors and grants from those who share our vision.
Speaking, a director from the Lagos State Office for Disability Affairs, LASODA, Mr Oguntoye Oyewole who noted that the LASODA was mandated to fight against any form of discrimination and abuse against people with disability in Lagos State, observed that many of the PWAs are employed by the state.
He said through a fund created for disabled people in the state, LASODA has been able to support PWAs by distributing sunshades, umbrellas, creams and others to enable them to maintain their skin and eyesight.
“We are celebrating albinism today, talking about stigma or discrimination against albinism. There is a law in Lagos that prohibits discrimination and anyone short of the law will be dealt with. People with albinism have been included in the fund. We gave 250 slots for their employment PWA are not left out.
On yearly basis, Lagos state has a fund called disability fund to purchase different assisting devices and that includes that of people with albinism, some of these pills cost as much as N60,000 per tube. We gave out umbrellas, protective glasses, other sunlight creams to ensure that the heat in the sun rays does not penetrate to their skin.” he added.
The Director, Programmes and Logistics, OAM Foundation, Mr. Ugochukwu Orji, said the family has a greater role to play in ensuring that PWAs celebrate their strengths beyond all odds and reach their potentials.
Orji said parents should be encouraged to love their children and build their self-esteem to achieve their potentials in life.
Onome who is also a PWA said: “My parents always treated us as one and they helped us in our confidence building. schools must put adequate measures that would ensure conducive learning for PWAs. Teachers should be patient with them and encourage them to learn using new methods that put less stress on the eyes. Society must see PWAs first as humans above anything.
“This is why we preach beyond the complexion. OAM is open to partnerships. We will like to see more collaboration. More sincerity by stakeholders in ensuring that the persons with albinism enjoy their fundamental human rights,”
In his presentation tagged “Beyond all odds – PWA and Diversity, Inclusivity, Employability and Education in the New Future”, a Consultant Physician and Dermatologist at the Lagos State University Teaching Hospital, LASUTH, Dr Folakemi M. Cole-Adeife who explained that albinism is an inherited disorder said it is estimated that 1 in 17,000 people have albinism worldwide while in Nigeria, 1 in 10,000 people are affected.
According to him, albinism is characterised by a lack of pigment (melanin) in the hair, skin, and eyes, making the person vulnerable to the sun and strong light.
“As a result, practically everyone with albinism is visually impaired and at risk for skin cancer. There is no therapy or cure for albinism, as it is a genetic condition. “In Nigeria, it is more common in parts of the country where people marry from their villages or same local govt. This is quite common in South-Eastern Nigeria. However, some parts of the world like some regions in Tanzania have incidences as high as 1 in 1,000 people. Males and females are affected equally. People with albinism have normal and above-average intelligence.
On health challenges, he said people living with albinism are more prone to skin cancer, and visual impairment and that they often face discrimination and violence because of their appearance, particularly in Africa and Asia, adding that albinism is shrouded in myth and dangerous and erroneous beliefs.
“We must continue to fight for the respect of fundamental human rights of persons with albinism, underlining the importance of their empowerment and full, equal and meaningful participation in all spheres of life.
“Serious human rights violations, arising from accusations of witchcraft and ritual attacks, have increased. The UN Member States continue their efforts to protect and preserve the rights of persons with albinism to life, dignity and security, as well as their right not to be subject to torture and cruel, inhuman or degrading treatment.
A PWA, Mr Chimezie Udechukwu stated: “Our parent treated us normal, no special attention, they taught that the only way we can adapt to the challenges and discrimination that comes with albinism is by being raised like a normal child, so when we experience bully, name-calling, our parent told us that that is what life is going to give us, you don’t expect us to raise you weak, I learn how to cook, fetch water do all the normal housework from my mother.”