Albinism: Africa Needs to Do More

When Mwaura Maigua emerged Member of Parliament in the Kenyan National Assembly in 2013, he symbolized hope and triumph for millions of people with albinism across Africa. As the first MP with albinism in Kenya, Maigua became the voice of the persons with albinism population, not only in his country but also for the continent.

In the years that followed, he spent considerable time on the floors of parliament debating laws and statutes in defence of the various Kenyans with various disabilities.

For instance, as Senator, Maigua successfully sponsored a bill to increase the budget allocation for the National Council for Persons with Disabilities and the inclusion of youth with disabilities in the National Youth Service.

While advocating for PWDs to be appointed to various public offices, he spearheaded the establishment of an isolated budget to cover free sunscreen lotions, skin cancer treatment and eye-care services for Persons With Albinism (PWA). More so, he successfully pushed for legal amendments to capture PWA in the 2019 Census in Kenya.

Although these wins are laudable, they make little sense to anyone who does not know the level of discrimination and unfair treatment meted at persons with albinism in Africa. Treatments that Maigua himself has been a victim of.

As a boy, Maigua was raised by his mother, Grace Mwaura. Of course, this was no conscious choice as her husband divorced her and disowned her child with albinism, citing promiscuity because, being a black man, he couldn’t have fathered a white child.

Although Maigua grew up in the care of his grandmother and extended family, it didn’t shield him from the verbal and emotional abuse from the other kids at school, the playgrounds and streams.

More dangerous is the risk of getting killed. You see, just as rhinos and elephants get killed for ivory, persons with albinism get killed for allegedly possessing spiritual powers, and their parts are used for powerful rituals that bring wealth, good luck and political success.

Africa has come a long way since Maigua’s boyhood days. However, there are still legacies of anti-albinism enshrined in folklore, and unwritten statutes passed down from one generation to another. These relics are the burning embers of anti-albinism across millions of African communities today.

Even persons with albinism born into Royalty, such as the famous Malian singer, Salif Keita, are not insulated from the woes of melanin-less skin. They are often ostracised as they are believed to bring bad luck to families and entire communities.

What Causes Albinism?

If persons with albinism lived among pale-skinned folks like the Scandinavians, they wouldn’t draw so much attention. But since they live on a continent with brown-skinned folks, persons with albinism always draw unwanted attention.

PWA suffer from abnormal skin pigmentation. According to the U.S. National Library of Medicine, their inability to produce melanin in their skin cells is often a result of hereditary. Melanin is a dark pigment responsible for the colouration of the skin, hair and eyes. But persons with albinism lack this. Since melanin also protects the skin from harsh sun rays, persons with albinism lack any natural protection and heavily rely on sunscreen, which is unaffordable to most. More so, they suffer from vision problems and are vulnerable to skin cancer.

Albinism in Nigeria

In Nigeria, the case is no different. The Albino Foundation reports that over two million Nigerians are living with albinism. At least 600,000 of that population face constant discrimination and marginalization daily.

With such a number, one might believe that PWA has the proper representation to get their voices heard, and their needs met. But numbers sometimes don’t do the trick. Unlike other vulnerable groups, persons with albinism do not enjoy enough attention, security and support from society.

Much of the poverty and poor education persons with albinism suffer is not linked to any mental or physical disability. It is often a direct result of discrimination, social exclusion and stigma. From persons with albinism who are killed at infancy to those who are denied an education because “their employment prospects are next to zero,” the struggles are dire.

A single article cannot explain the various shades of struggles of PWA today. However, there are efforts we can and should continue to make to ensure a good life for these vital members of society. Here are a few.

1. Health

Health ministries must orient and reorient new and old midwives and other healthcare professionals that they owe persons with albinism as much care as they owe regular infants. Traditional midwives in rural areas must be brought up to speed with the actual cause of albinism. This will erode false notions about albinism. Parents of children with albinism must be adequately counselled to dispel wrong notions of promiscuity on women and how to raise a healthy child with albinism collectively.

2. Education

African states must put more emphasis on training teachers about the social, educational and health needs of children with albinism. In schools and teacher colleges, the curriculum should be revised to include sections about albinism. This will help teachers and students understand the condition better.

Education is best done with tools and materials. Therefore, we must create new resource materials and promote existing ones to spread the pro-albinism gospel to as many as we can reach.

In schools, students with albinism should be allowed to wear attires such as long-sleeved uniforms, hats and sunglasses that protect them from excessive sunlight. During examinations, these students, most of whom suffer from visual impairments, should be allowed extra time. That’s not all.

3. Labour

Guaranteeing the health and education of PWA is essential. However, our efforts wouldn’t have yelled much, except they are given equal opportunity in the labour market. This is why African states must review their legal and regulatory frameworks to ensure they promote access to employment for PWA, including obliging their need for working conditions that do not undermine their health.

We must also implement laws that stipulate penalties for employers who discriminate against persons with albinism. This will ensure that they have equal access to economic empowerment and social protection programmes.

The truth is, these laws already exist in one form or the other. But they remain sealed in well-bound documents rather than getting the proper implementation.

It is high time we held governments, medical facilities, law enforcement agencies, communities and families accountable for the safety of PWA in Africa. As we destigmatize albinism, we not only give persons with albinism a chance to live everyday lives like everyone else, we also benefit from the rich value they will offer society.