Africa24 Media: Could you please introduce yourself and your organization to us?
Ms Vicky Ntetema: My name is Vicky Ntetema, I work for the organisation called Under the Same Sun which promotes the rights and wellbeing of persons with Albinism in Tanzania through advocacy and education. Under the Same Sun was founded in 2008 by Peter Ash, a Canadian national who has albinism. After hearing the report from the BBC that persons with albinism in Tanzania are being killed for their body parts for witchcraft purposes, he came to Tanzania in October 2008 and met several people including politicians, ministers, the Vice-President of Tanzania, the Tanzanian Albinism Society and other organisations to find out what can be done in order to first highlight the plight of persons with albinism in Tanzania but also to find solutions to these problems.
And so Under the Same Sun started in Tanzania in February 2009. Its education program has got 320 grantees from kindergarten to university level. The aim of educating or sponsoring these grantees is to help persons with albinism who are poor and not educated but keen to go to school. And also because a lot of persons with albinism are not educated due to their low vision. And some of these 320 grantees are already in employment since 2010 when we started the program. Now, we have about 86 people who have been employed and others continue their education from one level to another.
Africa24 Media:You have brought the issue of children with albinism to international attention trough your investigative documentary in July 2008, do you feel that much has changed since?
Ms Vicky Ntetema: When I broke the story to the international community in July 2008, that was when the world found out about what was happening in Tanzania. These are crimes that were committed against persons with albinism. Then, when Under the Same Sun started with the advocacy program that is to educate the public about albinism, we now see changes happen. For example we had a very extensive program in 2012. We went to villages and regions where quite a lot of crimes were committed against persons with albinism. We see that in all those areas and villages where we had our advocacy campaign there are no more killings, no more mutilations and no more abductions. But in areas where we haven’t been, we see that there are grave robberies.
I’m glad to say that there is a lull in the atrocities, but also I have to warn you guys that sometimes people do not tell because all these atrocities are committed within the family setup. And because there is also this culture of secrecy, quite a lot of atrocities may go unreported.
Africa24 Media:And how do you think a conference like this would influence effective policy on the rights of children, especially those with albinism? You have mentioned the fact that that some of these things go unnoticed because of secrecy in the families and communities, how do you think a conference like this can help with such a situation?
Ms Vicky Ntetema: A conference like this is very crucial to organisations like Under the Same Sun because it brings very many experts and people who are experienced, maybe not in solving problems about albinism, but other violence committed against children. So when we learn about what they do, what can be done, a way forward, all the international laws, CRC articles, and also the African Charter, we learn that there are some laws that are there to defend the rights of children. For us it is very crucial because we then can take that home and say that this has to be done this way. But also remember that when we are here we have people who for the first time do hear about the plight of persons with albinism in Tanzania. So this is also a platform for advocacy, people will know what albinism is, but also the policymakers, people who are experienced in atrocities, extreme violence committed against children are now able to advise us. And for me that is very crucial. They are not advising NGOs only but they take that farther and sometimes they take people from the African Union to go and investigate. It depends on what section to go and investigate in the countries but also when they investigate, there is a research and they write a report and recommendations to the people, and mainly to the government. And if the government, was not aware that there is help according to the international laws, then at least they would be made aware and enabled to do something about it. The whole purpose of this is to help the people help the government solve problems in their own countries.
InfoHub: What is the situation of children with albinism in Tanzania today?
Ms Vicky Ntetema: In Tanzania, we don’t have exact statistics on persons with albinism. And not all children with albinism are born in hospitals, the majority of them are born at home in rural areas; and so data is hard to come by. Also, people don’t want to register the birth of their child with albinism because for them the child is a curse. Now you have children who have albinism and people believe that not only are they a curse, but that they vanish, they don’t die. And so, when children and adults with albinism are killed secretly and the information doesn’t get to the media or the police, this would justify the notion that persons with albinism do not die, they just vanish.
We saw in one case whereby a five year old girl was murdered and the badly mutilated body was left there. The uncle and the aunt were waiting for the body to disappear. They have lived with this child for five years and yet because they believe in the myths that persons with albinism are ghosts that don’t die but disappear, they were waiting for that moment to happen. And when it did not happen, the body was still there for two days and it was buried with the help of the police.
When a child is born with albinism, the family is not happy, the father rejects the child. The mother will sometimes keep the child, but she is alienated from the society because no one wants to be near the mother, afraid of the myths that if you stay with a person with albinism you can get infected. Because they think albinism is infectious when in fact it is not contagious at all. And so can you imagine how this mother brings up a child.
There was one case where there was quite a lot of stigma in this family and the mother decided to tie the boy called Yohanna on the gate of the cow pen. So this boy grew up knowing only the cows, right now he is eleven and he makes noises like a cow, does not know how to talk to people, and does not react as a child to people because throughout his life to the age of nine that is what his world looked like, surrounded by cows. He was finally taken to one of the institutions that protect persons with albinism; these are government designated centres that were set up in order to protect people with albinism. Yohanna was there when we met him at age of nine, he would not talk, he would sit in the sun and nobody would even care to at least remove him from under the sun. So he had seizures and severe skin cancer; we took him to the hospital and he was looked after but then we had to leave him in the centre.
And parents of children with albinism who are in the centre do not even bother to visit them. They regard them as government’s children. For the mothers, it is a relief that the child is gone: now they can integrate; now they can become a member of the community and not be alienated.
Also remember that children are vulnerable, they are easy targets, easy to lure with just a packet of sweets and they will unknowingly go to their attacker that will hack them, abduct them and maybe in the end kill them.
But even after they are dead, their graves are desecrated and their body parts stolen. So to be a child with albinism in Tanzania and other 26 countries in Africa where these atrocities are being committed is like a death warrant. It’s a death sentence anytime you are waiting for someone to come and attack you. They live in fear.
Some of them do not go to school because of low vision for one, and the community does not understand that a person with albinism has low vision and cannot see properly. But also because they are afraid they may be attacked on the way to school or back home because several cases have happened that way.
InfoHub: Do we know how and why the targeting of persons with albinism started in Tanzania?
Ms Vicky Ntetema: The belief of targeting persons with albinism was started by witchdoctors. Witchdoctors are people who are consulted by politicians, by traditional rulers, by businessmen and women and even some religious leaders who go and consult them if they want to stay in power and if they want to win elections, if they want their businesses to boom. The witchdoctors introduced this from year 2000 following the world economic crisis.
But before that, before the changes in world economy, persons with albinism were still being murdered at birth. Since time immemorial witchdoctors are the people who were advising the community so when a child with albinism was born or a child with any disability for that matter was born, the witchdoctor would be consulted. And the witchdoctor would say, “kill them, they are cursed, they will bring natural disasters to our community”. So if there was flooding, drought, locusts destroying crops, hurricanes, storms, you name it, it is their fault because that is a curse. And the only way of getting rid of people with albinism was to kill them at birth so that they were not allowed to continue to live and bring curse to the community. And usually the mother is not told when the child is murdered at birth. It is a conspiracy between the traditional midwife and the father and his family and they tell her the baby was stillborn.
But when the missionaries came to Africa they looked like those children who were being murdered at birth. The community asked the witchdoctors who are these people who resemble the children that we were killing and the witchdoctors said “we don’t know, we should ask them”. So they were asked whether they came before and they were being murdered and they were born somewhere else and then came to Africa (because people did not understand what albinism was even in those days).
The missionaries said that these children are not a curse, they are god’s creation and so if they are born, let them live. And so the witchdoctors lost their credibility in the society, they started thinking what can we do to get rid of persons with albinism who are now allowed to live after birth. So they advised the traditional rulers these that when they died they be buried with persons with albinism so as not to abdicate their throne permanently. They advised them to have persons with albinism be buried alive with them, to continue serving them after they had left this Earth. And so persons with albinism were being buried alive and that is how this notion of persons with albinism vanishing actually started. Now that persons with albinism were allowed to live, people saw that they are people like us, who lived like us, who looked like us, only they have a different skin complexion and their eyes hair was different. And by having them vanish, witchdoctors could say “we told you that they are cursed, we told you that they are ghosts, look now they have vanished”. When what was happening was that they were taken alive, pretending as if they were taken care of to celebrate the life of the dead king or chief but in the end they would just be dragged and buried alive with the chief. And that was the notion that they were here and they just vanished but the chiefs and witchdoctors knew where they were.
InfoHub: What will it take to end the violence against children with albinism in Tanzania?
Ms Vicky Ntetema: From our experience as Under the Same Sun, through advocacy and public awareness campaigns we have realised that when people understand what albinism is they love and respect persons with albinism. And when people with albinism are educated it means that they can take their rightful places in every level of the society. And the stigma and discrimination and all these atrocities will be a thing of the past, it will be a faint memory. So we know very well that advocacy helps.
But that is not enough. We can educate people about albinism but if the laws are there and they are not implemented to protect the lives and all the rights of persons with albinism we will at least face problems. So what we want to happen is that the government has to take full responsibility for the lives of persons with albinism just like other people in their country. Very stringent measures have to be taken by the government itself in order to protect persons with albinism.
People who are buying the body parts have not been caught until now. Those who have been caught, arraigned in court and convicted are those who were caught with machetes and body parts and the witchdoctors themselves. But the customers, the clients of these witchdoctors, the end users, these consumers have never ever been caught. So we think that if they are caught, arraigned in court and then convicted and sentenced it will be the end of the business. Because everyone will be afraid of using body parts of persons with albinism because they know the consequences.
And finally, we need to work together at the Pan-African level. And that is why we are here and we need to work together in order to not only promote the rights of persons with albinism but also protect persons with albinism across borders. Cross-border trade between countries allows a witchdoctor in Tanzania to ask for body parts of a person with albinism from a Kenyan witchdoctor, they may ask from Swaziland or Mozambique or from a Malawian witchdoctor for example. Human trafficking and trafficking of organs of persons with albinism have to be dealt with and this can only be done if Interpol and all these African countries work together. We must have a national policy on albinism, a national policy that will go also with the new laws in order to deter people who target, attack, mutilate, kill persons with albinism or even desecrate graves and rob the body parts.
InfoHub:Thank you very much, Ms Vicky Ntetema, for doing this interview with us.