End albinism discrimination

2017-06-21 06:02
Therina Wentzel - Social Observer

Therina Wentzel - Social Observer

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Discrimination against people with albinism: Is it a black-and-white issue?

They are cursed. Their families are being punished by ancestral spirits. Their body parts make potent charms for riches and success.

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 hair and lighter, even blue, eyes. Albinism results specifically from both parents of a child carrying the gene. People with albinism are especially prone to skin cancer due to the fact 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 from anyone else. They are as capable as anyone else of living productive lives, of having “normal” (i.e. regularly pigmented) children and of contributing to society as a whole.

They are called “white monkeys” and “albinos”, which are dehumanising and derogatory terms. They are denied professional opportunities by people who fear them, and they are rejected in some black communities for being “white”.

In 2014, the United Nations 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 constitutions 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, like 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 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 states (Section 12) that individuals have the right to freedom from all forms of violence from either public or private sources and may not be punished in a cruel, inhuman or degrading way.

It also states that all people have the right to bodily and psychological integrity and security 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. Therina Wentzel is the national director of the National Council of and for Persons with Disabilities.

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