International Albinism Awareness Day 2019 – Interview

13 June 2019

13 June is commemorated annually as International Albinism Awareness Day (IAAD) with the aim of raising awareness concerning the particular challenges faced by people with albinism (PWA) across the globe. As is often the case when it comes to vulnerable and marginalised groups, their causes are championed by people who are knowledgeable on their issues and may or may not be their allies. More often than not, members of the disenfranchised are not the forefront of movements that speak particularly to their access to human rights. Unfortunately, this is also true for PWA. I had a conversation with woman with albinism to discuss, and learn, about PWA and the state of their human rights experience, to gain a nuanced understanding from someone for whom albinism is a lived experience.

Nodumo Ncomanzi is a Communications Officer for the United Nations Mandate on Albinism, outside of that, she runs her own creative consulting firm. From my limited interaction with her on social media, she is more than just her professional occupation and is a fierce advocate for herself - a woman with albinism - and other people who like her, have had to endure the discrimination, stigma and exclusion that attaches to the colour of her skin.

When asked what she wants people to know/understand about PWA, Ncomanzi’s response is simple, “PWA are everyday people. We don’t just exist under people’s gaze of amazement, amusement, suspicion, superstition.” PWA exist outside of all prejudice, outside of beauty pageants which, whilst laced with good intentions, have little impact in effecting actual social change, or even IAAD. Allocating one day a year is good, but in the grander scheme of things, a blip on the radar. She believes that normalising PWA is the missing key, particularly on the African Continent. South Africa is no stranger to violence against PWA, where they are hunted and killed or dismembered for good luck, or sexually abused to heal HIV/AIDS. The list goes on. This violence is a direct result of cultural interpretation of the genetic and hereditary condition. 

PWA are erroneously identified as “people living with albinism”. Ncomanzi says this misnomer should be replaced with “people with albinism” because the term “living with” is typically associated a health problem and usually one that one accrued/developed after birth. “Something that they have to live with as opposed to something that they are.” For example, PWA can develop health issues such as skin cancer as a result of their albinism and in that case, “live with” skin cancer as a result the environment they are in being aggressive to them. 

In every sphere that we address, Ncomanzi acknowledges her privilege. Unlike the majority of PWA, she was raised in a loving and supportive home, and had access to necessities like sunscreen and spectacles, throughout her life. Another unexpected privilege is that of being able to attend school - not without its obstacles - and reach the point at which she finds herself in her career. She is very much an outlier. She recounts how this privilege did not however, protect her from the prejudice and discrimination of outsiders. She says that in Zimbabwe, where she grew up, while stigma is prevalent, Zimbabweans are generally passive, and often, the stigma does not translate to (physical) violence. However, many cases of discrimination and violence go unreported in Zimbabwe, particularly where women and children are concerned.  Of her experience in other countries, she says that East Africa, which is notorious for its extreme violence and discrimination of PWA, was where she faced more blatant expressions of discrimination.

“In China, you’re a mutant.” She says that this is because China is one of the many countries where albinism is completely not understood. “In China I was definitely exposed to the most traumatising iteration of this discrimination.” People would touch her without consent on public transport, she would be photographed without permission and was even spat on. In spaces like this, where (black) albinism is a foreign concept - we cannot forget that albinism is not unique to people whose skin has melanin - she often has to explain her appearance. And so, for nine months, she endured the dichotomy of being in an incredibly advanced country that is also incredibly backward in the way that it treated her. 

In America where she now lives and works, she has been called a “freak”. She has experienced difficulty when relating to African Americans on her university campus and was made to feel like she did not belong in black spaces because her skin was not black. The irony is that Ncomanzi graduated from Yale University, an Ivy League institution, with a degree in Political Science.  One would think that institutions revered for academic excellence and inclusion would be the safest spaces for people of any minority. 

When speaking about the appointment of the Independent Expert on the Enjoyment of Human Rights by Persons with Albinism, Ikponwosa Ero, and whether this Office (for which Ncomanzi works), is impactful, Ncomanzi is visibly torn. She says the value of the Independent Expert is that her Office has become a centre for knowledge on issues concerning PWA. For any solution, knowledge is crucial. The challenge comes in the form of the mandate of the Independent Expert - singlehandedly trying to understand albinism globally. The Office receives limited support for the broad mandate with which it is charged. One must recognise that the Office is expected to understand the nuance of PWA in different regions, while being understaffed and without satellite offices in, for example, known hotspots for violence against PWA. Because of the status of the Office, any recommendations it issues are merely that - recommendations. UN member states are not obligated to implement them and thus, the plight of PWA remains largely unchanged. 

Ncomanzi suggests national/regional representation of the Independent Expert as a solution to the barrier to effectiveness. This brings us to a problem that seems universal. PWA are often subsumed under the umbrella of legislation that covers persons with disabilities (PWD). The Protocol to the African Charter on Human and People's Rights on the Rights of Persons with Disabilities in Africa refers to PWA only once, in the Preamble. The UN does not have an international agreement dedicated to the rights of PWA. The UN International Convention on the Rights of Persons with Disabilities does not expressly mention PWA at all. Despite these exclusions, PWA are allegedly subsumed under legislation, domestic or otherwise, which addresses PWD. 

This status quo consistently fails PWA. Ncomanzi says that there is a need to restructure taxonomies because of the insistent exclusion of PWA such that their particular problems are never addressed at any level. If PWA are to be legally considered PWD, they must still be articulated as PWA with specific and unique challenges to other groups of PWD. Until specific attention paid to the particular circumstances of PWA that require accountability from governments, there can be no enjoyment of human rights for them. 

According to Ncomanzi, the primary problem when it comes to addressing PWA, is that there exist no known, accurate demographics. Ncomanzi says that the figures are unknown because governments do not make a space within their national census to accommodate PWA, even in countries that are known hotspots for violence for PWA. She says, “this is a world that works with numbers. Numbers of people killed must be compared to the number of total people. There is no total. And that is a problem”. Where people are not counted, their existence can be ignored. It follows then, that their problems can be ignored, and when they experience human rights violations, those too, are ignored. 

It can be argued that because there are no reliable statistics on the prevalence of albinism, there is limited interest in PWA academically. Albinism is not studied enough so there is very little information, socially or medically, that is accessible to not only PWA themselves, but to the communities in which they find themselves. Knowledge, and access to this knowledge, will serve to challenge prejudice and literally save the lives of PWA. 

Ncomanzi is not the first PWA I have encountered, and she is unlikely to be the last. Yet I have learnt more about PWA from my interactions with Nodumo online than I have in my entire life. She is steadily carving a position for herself online, demanding attention, demanding to be heard, calling out discrimination and exclusion in the spaces she occupies and those that she has yet to, despite the plethora of backlash she receives. She uses her platform as a woman with albinism with access to information tools to disseminate knowledge, to challenge prejudice and normalise PWA in all walks of life. She speaks from her personal lived experience and adds the disclaimer, again, that her privilege has positioned her in an unlikely space. Most PWA experience daily discrimination at the hands of governments and private actors and have no avenue for redress. 

The question of political will from those in power is always raised when marginalised people are addressed. What limited available information there is, indicates that albinism is most prevalent in Africa, yet there is poor protection by the African countries of their most vulnerable. As it stands, most PWA do not have the tools to advocate for themselves. Therefore, for now, the onus falls on those who are visible and heard to bring them and their stories into spaces where they themselves can be seen and heard, and treated with at the very least, huaman dignity. 

By Ms Rebecca Sibanda, Legal Assistant, Centre for Constitutional Rights, 13 June 2019

*First published in Daily Maverick