They call us ‘albinos’ — the licence to mock and murder fellow humans

Friday August 20 2010

By MUMBI NGUGI

Truly the East African Economic Community has taken off. You can now move all sorts of goods and merchandise across the common border without hindrance. Indeed, there is this lucrative trade item — the albino.

You do not have to carry it across the border, it will walk across with you, and even keep you company on the way. If it happens to be your childhood friend, well, that’s just a minor inconvenience. The sale of its hair, legs, arms will fetch you millions...

If the story of Robinson and “friend” Nathan was not so tragic, it would be very funny. Indeed, it has provided some of our FM radio comedians with material to entertain their breakfast listeners with.

The small matter of the feelings of those born with albinism, their parents and relatives, is an inconvenience that they cannot be bothered with.

For those of us born with albinism in East Africa, and for the many fathers and mothers of children with albinism, the last three years have been a never-ending nightmare.

As though the card that nature dealt us was not hard enough to deal with, we now have to live in fear of people who believe that killing us and using our limbs for witchcraft will bring them great wealth.

We have to battle skin cancer because we do not have melanin, yet most of us cannot get adequate education, and even if we do, getting employment is a major challenge. So we end up working in the sun, as farmers or hawkers, and die before our 30th birthday.

We have to deal with a society that is largely silent about our plight, and media that refuse to find a way of referring to us in ways that can bring to the fore our humanity, rather than our genetic condition.

For that is the only thing “wrong” with us. In a world where colour has defined so much of people’s fate, from slavery to colonialism, we are in the unfortunate position of not having been born with any, or with very little, and thus become eternal outsiders, fitting nowhere.

Our genetic inheritance from our parents, both mother and father, means that our skin does not manufacture melanin. In every other respect, we are like everyone else.

We have no supernatural powers. If you use our bodies in witchcraft you will only carry around with you the rotting body of your brother.
For that is what we are, whether you like it or not.

We are born of parents who do not have albinism, they just happen to be carriers. They too inherited their genes from their parents, which they passed on to us.

You do not know whether you are a carrier or not, and whether your mate will also be a carrier, in which case one in four of your children may be born with albinism. Please note that I do not use the word “albino.”

The use of the term has always been derogatory, placing us in the same level as animal species, placing our genetic condition first, and ignoring our humanity.

Albinism is the only condition that I know of which everyone thinks is fair game, which is okay to laugh at and insult and mock. We have just passed a new Constitution that guarantees to everyone the right to life, human dignity and the right to have that dignity respected.

We are, however, living in a society that has little space for difference, that assumes “different” to be inferior.

While not feeling completely hopeless about our situation, for there are many good people out there who care for and support us, one is apt to get depressed by the almost total lack of support that people with albinism face.

The Church has fought tooth and nail for the right to life of the unborn since the constitutional reform process started, but I am yet to hear a single church leader condemn the killing or exclusion of persons with albinism.

The human rights sector has been largely silent about the killings.
As for the media, our pleas that they begin to change attitudes towards us by the terms they use to refer to us has gone largely unheeded.

We are, to the media, albinos. The phrase “persons with albinism” is too long, too awkward. The media, it would appear, cannot sacrifice journalistic convenience even if it would begin the slow process of helping change attitudes to people who were born with albinism by putting their humanity first, rather than their genetic condition.

Mumbi Ngugi, a practising lawyer in Nairobi, is the managing trustee of the Albinism Foundation of East Africa