Albinism – beyond the Rhetoric in Malawi

Updated: Jan 15


Published in the author's personal capacity.

I picture the nights of restlessness, the tricks that come with turning and tossing the body that hardly feels your own. The intermittent pains are as they have never been felt before. By the slight stroke of luck, the ride to the hospital barely makes it for her into the delivery room, where more twisting and turning is nothing but assured. As the intermittence narrows, the husband’s fanning and incessant rubbing on her back are insatiable – she only hangs to the hope that every mother beholds. That of seeing the precious little human being she’s been carrying around in her gut for nine calendar months. She pushes with all her might that more sphincter muscles than one let loose some materials she would otherwise never feel so proud to share, supplies that both nature and society have defined the most personal way of conveyance to the surface of the world – until this moment. Together with this bundle of embarrassment is the doctor’s announcement: it's a girl!

A few minutes of rest are all she needs before she can excitedly hold her child. The nurse hands her the little wrapped package inside of which is contained the lightest, brightest, thing she has ever seen. Its hair and eyebrows are the most peculiar, unlike mummy and daddy, and her skin so pale. The joyful excitement slides down her throat as she faces the chagrin of having delivered a child that will have to live with an irreversible anomaly that owes its being to the shortage of melanin in her little human body – albinism. Other than the conventional threat of sun rays on her skin, and the care required to cover her wounds so flies do not make camp on her, a warm assurance that this is not a biological death penalty handed to her offspring wells in. Life would still normally happen for both parents and daughter. But a bitter reality for these young parents is only beginning.

The chilling feeling of the stubborn violence against people with albinism will never pacify this couple over their daughter’s life as long as their only choice is to raise it in an African country, let alone in Malawi. The egregious violations of the rights of persons with albinism that stay unabated confirm a government mechanism falling short in effectively propagating measures that restore respect for life, protection and fulfilment of the human rights that people with albinism should equally enjoy. There is not a day in 21st century Malawi that these young parents will let their little girl stroll out of sight, even just as she plays, nor will her adulthood promise of safety and restful nights. It is as if albinism comes in a package larger than its wrapping can provide.

The Triple Effect

As early on as 2007, charitable outfits such as the Malawi Chapter of ANPPCAN have attempted to engage minorities in whose guise work on albinism has been given some consideration. A subject not as sensual as other human rights issues plaguing Malawi, the unseen heroes as ANPPCAN Chairperson, Ken Williams Mhango, never found the favour of donors to sponsor simple programs to help make life just a little bearable for people with albinism. Instead, Mr. Mhango would frequently dip into his pockets to keep the program running when donors, local and foreign, feigned concern for the albinism problems and rather turned to matters that seemed to be more pertinent. The lack of interest on the part of both development practitioners and donors makes a third dimension complementing societal silence and the public system mummers that worsen the plight of people with albinism in Malawi.

While there has been no systemic and systematic response to the problem, the escalation of the attacks and insecurities surrounding albinism have resulted in the present state of degradation where monetary incentives for buyers and sellers of albinos have taken root. Even cultural beliefs perceiving people with albinism as possessing special attributes that bear meaning to traditional medicine and an unending pipeline of wealth have become more prominent in a country embattled with growing poverty and income inequality.

Some bitter pills, some loopholes

Now, Malawi has earned itself a name on the world stage for its appetite to tolerate violations against people with albinism, giving a rude awakening to sleeping giants as Amnesty International, the rest of the NGO community and the United Nations. A commitment to vigilance means that Malawi’s complacency and contentment must not become household names. Vigilance requires digging deep into the roots of the problem and decoupling solutions and opportunities from the persistence of an established incentive system profiting from albinism. It also means that the country need not relax in the comfort of a draft national response plan, when perpetrators remain on the loose and victims and/or survivors lack suitable recourse. The apparent non-attendance to the escalated aggressions is that Malawi has not learnt its lessons from leaving business unfinished for far too long.

Since July 2016, with no reported attacks, the feedback from the Police Service is soothing. However, it should not be the illusion of a victorious fight. The Police think awareness and sensitization have only discouraged would-be culprits. And, interventions so far have not covered all 29 districts. However, in the wake of the attacks, Malawi’s media has actively assisted to amplify the voice against violations, which has piled up pressure for a more candid response.

The vulnerability of persons with albinism remains as perpetrators have either gone underground or are snooping to cultivate new bases. The answers to the savagery inflicted are still in the horizon, and the chances for a full life of the baby girl at the beginning of this article remain bleak. Confusion for whether there is a real market lurks on the minds of many Malawians. Speculations abound either way. To believe there are economic incentives that are driving the attacks is a formidable persuasion, although the markets for body parts are yet to be unveiled.

Malawi needs to avoid a rebound of the stinging albinism saga. Yet, the growing silence on the matter is worrying. Concrete actions to record and disseminate data will inform sensible decisions on warranting equal rights for persons with albinism. In spite of the exposure of identifying where persons with albinism are located, that data might reveal, I argue that it provides the opportunity for the right institutional setup to address the problem. But security gaps subsist. No albinism-oriented security measures have been instituted and financed. And there is the need for psycho-social support to halt the mental damage that speculated attacks impose on people with albinism and their significant others. In the meantime, the violation of rights continues to remove children living with albinism from schools and other public spaces, with a destructive effect on their free movement and investment in social capital.

The provision of appropriate services is in short supply, particularly in providing skin care that is dear to people with albinism. In July, during my visit to Machinga District, many people with albinism I met experienced degrading skin conditions, worse for children. Families affected by albinism had not heard of sunscreen, or perhaps economics kept them at arm’s length in accessing this critical protective gear. Local public facilities also have larger problems than stock sunscreen for free. While these conditions, in themselves, are a threat to their lives and livelihoods, they are the complication to an already life-threatening human security situation. The lesson here is the demand for holistic approaches to respond.

​The government of Malawi, a key duty-bearer to fulfilling the rights of vulnerable people, needs to step up its game. The development of Malawi will not be skewed towards other more vulnerable groups, as is the usual rhetoric. From a human rights angle, all rights – including rights of those living the albinism ordeal – are vital. The government needs to be in the driver’s seat, and the response plan is a great starting point. But it has to actively rally all actors in a multi-sectoral approach to implement it.

What next for Albinism in Malawi

An empowerment question for persons with albinism lingers on. If they are empowered, provided with economic and social incentives, and handed the platform to voice themselves, the country has a better chance to respond to the multiple forms of violations, discrimination, stigma and beliefs that remain prevalent. Empowerment is not simple, and needs to be broad-based for an effective response to the challenges facing the ten thousand or so people living with albinism in the country. Some involve addressing the stigma befallen to affected households with targeted messages and information. This has to be scaled at the national level to address the root causes farther afield.

It is imperative to detangle the long-held cultural and traditional beliefs that continue to put people with albinism at risk of human security, social exclusion and discrimination. A dose of love and hope – as they are couched in international human rights frameworks – will go a long way too. Malawi needs to borrow a leaf from interesting examples within Africa, like Cameroon, where persons with albinism are given special prominence.

The underlying norms and stereotypes that disadvantage people with albinism will require a national operation that engages the home, hospital, religious institutions and schools, where inclusion should be a guarantee for them.

We are likely to continue facing incidences of albinism in Malawi’s society, like in every other society in the world. The drive by civil society to advocate and ensure the message hits the very core of society and governance systems should be unwavering if our little girl above is to enjoy life, prosper and contribute to the country’s development. It is an absolute necessity that the birth of a child is celebrated with joy, whatever their pigmentation or coloration, and not the beginning of a nightmare for parents who hold their child for the first time with a dim anticipation for its future.

#CULTUREDEVT #ECONOMICSANDDEVELOPMENT

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