Albinism - it's time to drop the myths, superstitions and stereotypes
They’re cursed. Their families are being punished by ancestral spirits. Their body parts make potent charms for riches and success. Their blood imparts magical powers. They’re less intelligent, or sterile. They don’t die, but simply vanish.
As we mark International Albinism Awareness Day on 13 June, it’s worth reflecting on these terrible – and sometimes lethal – myths, superstitions and stereotypes (as well as many others) about people with albinism, and how we can each play a part in exploding them.
Albinism is simply this: a genetic condition that is caused by a recessive gene, carried by both of a person’s parents. That person’s body then has little or no ability to produce melanin, which colours their skin, hair and eyes.
This manifests in white skin, white or straw-coloured hair and lighter, even blue, eyes.
It is important to note that millions of people carry this recessive gene without it affecting their appearance, many of whom probably do not even realise they carry the genes. Albinism results specifically when both parents of a child carry the gene.
People with albinism are especially prone to skin cancer, because of which they have a particularly high mortality rate, and they tend to suffer from a range of eye problems.
But other than this genetic disability, people with albinism are no different at all from anyone else. They are as capable as anyone else of living productive lives, of having “normal” (i.e. regularly pigmented) children, of contributing to society as a whole.
The condition is more prevalent throughout Africa than anywhere else in the world; in South Africa, as many as one in 4 000 people are living with it – around four times the average in North America and Europe.
Yet despite the fact that albinism is a relatively common disability, myths and misconceptions about it abound, and people living with it face discrimination, hurt and even personal danger on a never-ending basis.
They’re called “white monkeys” and “albinos” – which are dehumanising and derogatory terms. They’re denied professional opportunities by people who fear them, and they’re rejected in some black communities for being “white”.
Many live in constant fear of physical and verbal attacks. In some instances they’re regarded as being lucky, but this can have fatal consequences: some traditional healers and others promote the patently fallacious idea that their body parts make powerful muthi for those who seek riches and success.
And despite what ignorant people say, people with albinism are not being punished by the gods or ancestors, they are not the product of incest or interracial relationships, they are not sterile, and they are not possessed of strange or magical powers.
The discrimination and stigma that people with albinism face is of such a scale worldwide, that no less a body as the United Nations has taken action.
In 2013 the UN Human Rights Council adopted a resolution that calls for the prevention of attacks and discrimination against people with albinism; in 2015, in response to calls from civil society organisations, the council appointed an Independent Expert on the enjoyment of human rights by persons with albinism, who reports annually on the matter.
In 2014, the UN General Assembly proclaimed 13 June as International Albinism Awareness Day.
South Africa has, as has so regularly been proudly proclaimed, one of the most progressive Constitutional orders in the world. The Bill of Rights in our Constitution guarantees a whole host of rights and protections to every person, but they are too often trampled upon in some way – through endemic racism, sexism, homophobia and many other evils.
In terms of what is enshrined in the Bill of Rights, I would argue that people with albinism bear the brunt of more kinds of human rights violations than most:
- Section 9 prohibits discrimination on the grounds of disability, yet people with albinism are denied opportunities, and face abuse and violence, specifically because of their appearance.
- Section 10 affords the right to human dignity – in other words, the right to be valued, respected and to receive ethical treatment; to have worth. By calling them “monkeys”, for example, people with albinism are dehumanised and disrespected, and exposed to danger.
- Section 11 guarantees the right to life, which goes beyond the concepts of capital punishment to mean that one should not be killed by another human being. Yet people with albinism face the danger of being murdered and dismembered because of how they look.
- And Section 12 states that everyone has the right to freedom and security of the person, the latter meaning much more than just not being detained without trial. The definition of security of the person in our Bill of Rights includes s12.1(c): “to be free from all forms of violence from either public or private sources”; and s12.1(e): “not to be treated or punished in a cruel, inhuman or degrading way”. Section 12.2 – the right to bodily and psychological integrity – includes s12.2(c): “to security in and control over their body”
We engage in ongoing, heated debate – and correctly so – around issues of race, gender violence, our colonial past, land distribution, sexual orientation and so many others.
Because of these debates we come to understand, for example, that racism is discriminatory, wrong and unjustifiable, and that the wrongs of the past in this regard must be addressed.
So why should our reaction to discrimination because of albinism be any different?
It is also wrong, and it is certainly unjustifiable – not to mention arbitrary and irrational – to single people out and treat them differently because they have a disability that makes them look different to others.
Just as we are prepared to take a stand against the evils that continue to plague our society, so we should against discrimination towards those with a disability.
On International Albinism Awareness Day (and every other day), that means questioning and confronting intolerance of, and violence towards, people with albinism.
Therina Wentzel is the National Director of the National Council of and for Persons with Disabilities
For more information, please contact Mkhuseli Vangile on +27 (0)11 440 4841 or +27 (0)60 982 6163, or email firstname.lastname@example.org