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 a woman with albinism to 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 based on  the colour of her skin.

When asked what she wants people to 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 Africa. 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. This violence is a 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 with 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 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.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, 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, saying that this is because albinism is misunderstood. “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. 

In the US, 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, hot spots 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 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 universal problem. PWA are often subsumed under the umbrella of legislation. 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 doess not expressly mention PWA. 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 is 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 is that there are no accurate demographic statistics. Figures are unknown because governments do not make a space within their national census to accommodate PWA, even in countries that are known hot spots 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. 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. Knowledge, and access to this knowledge, will serve to challenge prejudice and literally save the lives of PWA.

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  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 African countries of their most vulnerable. As it stands, most PWA do not have the tools to advocate for themselves. The onus falls on those who are visible and heard, to bring them and their stories into spaces where they can be seen and heard, and treated with at the very least, human dignity. DM

Rebecca Sibanda is a legal assistant, Centre for Constitutional Rights, a unit of the FW DE Klerk Foundation.