POLICY INTERROGATION, DISCOURSE AND DEBATE BY OSELOKA H. OBAZE
Albinism- Beyond Our Complexion
Keynote Address By Mr. Oseloka Henry Obaze, MD/CEO Selonnes Consult Ltd. And Anambra State Governorship Aspirant At the Conference on Albinism, On Friday 9th June, 2017 Cosmilla Hotel, Awka,
I am really delighted to be here. I decided to honour your invitation today ahead of the International Albinism day on June 13, because of the great importance I attach to challenges affecting the most vulnerable people across the World. Globally, women and children have been identified as falling within the category of vulnerable groups; but there exists other sub-groups that are arguably even more vulnerable.
Our multi-racial and multi-ethnic world is full of people – 7 billion plus. Naturally, some people are normal and some are not. But we are all people, with the same inalienable rights; and similar aspirations. Indeed, no living person is a child of a lesser God. But societies create exceptions, stereotypes and labels, and that is what makes all the difference.
Nonetheless, who we are and how or where we are born, is not a matter of personal choice. Yet, our world is full of people who find themselves at odds with the society, with culture, with certain perceptions, biases and various forms of stigmatization.
Among these people is the albino population. Beyond their complexion, they are normal people like any of us. In a world of 7 billion people, it is estimated that one in 20,000 people are albinos. Parts of Africa have a higher incidence of albinism; and thus outstrip the global average. An estimated 200,000 Americans are albinos. Available data shows that “Albinos make up about one in 4,000 people in South Africa and perhaps one in 5,000 in Nigeria.” Nigeria has one the world highest prevalence of Albinism with about 2 million people affected and more than a quarter of that figure marginalized and discriminated. It is also estimated that 20 out of every 100,000 persons in Southern Nigeria are affected. Albinos living in Nigeria and elsewhere are confronted by multi-faceted problems and I will highlight a few later.
Interestingly, some of these people are very famous and some are indeed celebrities. World famous albinos include model Shaun Ross, model Diandra Forrest, Musician “Yellowman", Stand-up Comedian Victor Varnado, singers Salif Keita and Johnny Winter and lampoonist William Archibald Spooner. Even royalty has albinos like Emperor Seinei the 22nd emperor of Japan, and King Edward the Confessor, who ruled England from 1042 up to 1066. Indeed, one of the smartest, charming, diligent and enterprising persons I know, and whom I feel privileged to call a dear friend, is an albino - she is Her Excellency Ambassador Uche Ajulu-Okeke, the immediate-past Consul-General of Nigeria to South Africa.
If albinos can be celebrities and royalty, it means they can function normally. Still and ironically so, it's human nature to look first at differences instead of similarities and to highlight divergences instead of convergences. The paradox of albinism is that while people discriminate against albinos, albinism is non-discriminatory. Indeed, albinism exists across the world in all tribes, colour and religion. More facetiously, albinism is like greatness; some are born great, some achieve greatness and others have greatness thrust upon them. Likewise, some and born white, some are born black and some have albinism thrust upon them. And that is where the difference should end. Indeed, as per the theme of this conference, in dealing with albinism, we should look beyond our complexion.
But really, what is albinism? Simply, it is a physiological condition. “Albinism in humans is a congenital disorder characterized by the complete or partial absence of pigment in the skin, hair and eyes. Albinism is associated with a number of vision defects, such as photophobia, nystagmus, and amblyopia. Lack of skin pigmentation makes for more susceptibility to sunburn and skin cancers.”
Scientifically, we know that “oculocutaneous albinism is inherited in an autosomal recessive pattern, which means both copies of a gene in each cell have mutations. Most often, the parents of an individual with an autosomal recessive condition each carry one copy of the mutated gene.”
Problems of Social stigma – the myths and challenges
Albinism has two major challenge factors: one is physical and health-related and the other is psychological and attitudinal. The latter relates to perceptions and stereotypes, but often from lack of understanding. Indeed, Albinism is still greatly misunderstood, medically and socially. Hence, various erroneous beliefs and myths, even superstition, are attached to the physical appearance of persons with albinism; such mindsets foster stigma, discrimination marginalization and social exclusion of albinos. In some places such beliefs can be fatal for albinos, who are hunted, maimed and killed with their body parts used for rituals.
Accordingly, experts have determined that "The deeply entrenched prejudices they face worldwide also impede persons with albinism from accessing adequate healthcare, social services, legal protection and redress for rights abuses." Similarly, it’s been empirically established that "The forms of discrimination faced by persons with albinism are interrelated. Their right to education, for instance, is affected by their vision impairment that can force them to drop out of school. A poor level of education, in turn, can lead to unemployment and affect their right to an adequate standard of living, consigning many to poverty."
As I mentioned earlier, such discrimination is rooted in harmful historical and cultural myths resulting for instance, in some parts of Africa that albinos are preferred for witchcraft rituals and amulets as body parts are used for purposes such as bringing good luck, political success and financial freedom. In some clime, the belief persist that Albinos are ghosts who possess the power to disappear and are therefore immortal. It is shameful and indeed tragic that erroneous beliefs still persist in our society. This has fueled attacks against Albinos in a country like Tanzania, where recently albino children have become victims of several deadly attacks for ritual. As we speak, some of them are in the United States for treatment and protection. According to the United Nations Human Right Council, reports of such ritual killings are most prevalent during political and electioneering periods.
Placing Albinism in its Proper Public Policy Context
If nature has endowed albinos with challenges, most societies have compounded such challenges by indifference and poor public policy articulation. Hence, there is a dearth of statistical data on Albinism globally. That there is no known and consensus figure for the global population of Albinos is sad, more so in this age of information technology. That disposition borders on policy failure and neglect of people living with albinism. Without relevant demographic data on the global population of Albinos, including distribution by gender, ethnicity, region and vulnerability index; it becomes extremely difficult to get a hold on the challenges bedeviling people living with Albinism. To be in 2017 and have no concrete global data on Albinism besides estimations is utterly disappointing.
Let us face the facts. When there’s no concrete global data, you can then imagine the situation in our country, Nigeria. Presently, there is no provision in the birth record of Nigerian hospitals at federal or state levels to indicate Albinism. This failure of course pertains to many other special needs conditions. There is yet another complicated public policy issue at the global level, which is still being widely debated. The argument is whether Albinism should be included in the disability register to make it easier for people living with this condition to access the various privileges and rights enjoyed by persons with disability. While it is a welcome idea, arguments against this measure revolve around the bad-feeling conferred by the use of the word “disability”. Advocates and supporters of the idea always point out – and if I may add at every opportunity -- the inherent problem facing persons with Albinism especially sight impairment, which they argue should pass as a disability. Equally worrisome is the general lack of awareness compounded by lack of sufficient media reportage of the discrimination and other challenges faced by persons living with Albinism. The news of attacks on Albinos is normally treated with disdain. This make societal attitude towards Albinos very disenchanting and suffocating.
Addressing the challenges faced by albinos demands that we see such challenges as public policy challenges; they fall within the realm of affirmative action, education, healthcare, social welfare and protective right and anti-discrimination. As Inkosi Dumisana Nhlengethwa of South Africa tweeted, recently, “affirmative action policy should compel public and private institution to hire people with albinism in their core workplace.” That will be a good start.
Furthermore, we must begin massive public awareness on Albinism in all our local languages aimed at informing our people especially those in rural areas of the truth and realities of Albinism. We owe it to ourselves and our humanity to demythologized and demystify existing myths on Albinism. Take that to be an original, authentic and positive quote on Albinism.
Information sharing is imperative. All channels of communication should be explored to get the information out to the public. We should also develop a programme that educates parents of Albinos on the need of their child’s genetic condition. For its part, Governments at Federal, State and Local levels, must as a matter of policy prioritize and invest in data management. Working without concrete data is a waste of time and scarce resources as there is no mechanism to investigate the success of any work done in this condition. If the hospitals include Albinism data in their birth records, the contact details of the parents will become useful in sending them timely information to guide their care of the child. Such policy options which are very cost-effective are not difficult to achieve; they only require focus, efficiency and purposeful leadership.
At the national level, we must lend our collective voice in urging the Federal Government to expedite the process leading to assent of the Disability Rights Bill by President Muhammadu Buhari. This will address amongst other cases, the denial of human rights to persons living with Albinism. More broadly, this Bill seeks to establish a National Commission for Persons with Disability to be vested with the “responsibilities for their Education, Health Care and the Protection of their Social, Economic, Civil Rights”. This bill passed first and second reading at the National Assembly during the tenure of President Olusegun Obasanjo and was sent to former President Goodluck Jonathan. He too was unable to assent to it. The bill is presently on the desk of President Buhari. I hereby call on Acting President Yemi Osinbajo to call for the Bill and assent to it, as it will assist states like Anambra to deal with many challenges and unmet needs in the healthcare sector. Because we are attentive to such policy deficiencies; we are obligated to raise them, push and hope for better luck this time.
This audience may be wondering if I have concluded that Albinism is a disability. The fact remains that under the Convention of the Rights of Persons with Disability, the terminology “persons with disability” covers a broad spectrum including several conditions that limit equal participation of such persons in the society. Either contextually or by broad interpretation, Albinism is already included, but such categorization has to be made official in the disability register so that the accruing benefits will be extended to those so entitled.
I am cognizant, and indeed believe strongly, that through such bill, Albinos will have to access free education, healthcare and other social protection. Our society and government must be sensitive to the vulnerability of this group in our society. There are prevailing factors we are unaware of or take for granted. An Albino needs one extra hour to write the same examination as a non-vision impaired person; because of the inherent vision impairment challenges they face. Yet here in Nigeria, we assign them the examination time slot we assign to unimpaired persons. That’s unfair as it retards their learning. This, may in part, help explain the high Albino dropouts rate in our school. If Albinos deserve special attention, let’s give it to them. It’s only fair. Government is meant for every citizen with or without special conditions. It is the responsibility of government not to leave anyone child or any person behind. For this reasons, we as citizens in good standing must accept the responsibility of becoming advocate and ambassadors for albinos and all those who and physically or mentally challenged. The cause of Albinos must become our cause more so, as we have escaped their fate.
As part of our advocacy, we must continue to push for additional and dedicated funding and investments required for education and healthcare of people living with albinism. It is saddening that albinism as a social welfare or healthcare issue is not anywhere the curriculum for our nursing schools or in the general teaching curriculum. This should be one of the earliest introduction point of Albinism to our young people. I also believe that subsidizing the cost of chemical sunscreens for Albinos is one of the low-hanging fruits that any focused government should provide to help alleviate the plight of persons living with albinism.
Albinos have developmental difficulties. That’s a fact. Women and children remain the most vulnerable in the grouping of people living with albinism. Government must pay special attention to them attention. We should. And we must. One of the most important things for them is Health. Will it be too much if the government offers this two groups health insurance for life? No, it is the responsibility of the government to take almost total care of persons with such condition. It’s high time such policies became priority for our governments. I urge all of us gathered here today to showcase the compassion of our humanity and embrace equality for all. Everyone deserves equal opportunity to be part of the society; no one should be denied that right. Your skin colour should not bother you; your special condition should not worry you, just try hard enough to live above and beyond your complexion. Only you can stop yourself. Thanks for your attention.