Audio discussion on albinism at the Human Rights Weekend in Amsterdam

Andrew Stroehlein: Hello and welcome to the Human Rights Weekend here in Amsterdam. This is an event that takes place every year where through film and discussion we look at a variety of human rights issues around the world. In this audio discussion, we're going to talk with three experts about people with albinism, the challenges they face, the human rights issues involved, and some of the discrimination they confront every day.
    
We'll also be looking at what governments are doing about it or in many cases not to doing about it, and how the international community and you as an individual can help. To start us off, we'll go to Lisa Luchtenberg who is from the albinism section of the Eye Association here in the Netherlands to talk about what albinism actually is.

Lisa Luchtenberg: Well, albinism is a genetic disorder. It’s a stable disorder and it's a disorder around pigmentation which results in most of the time a very pale skin and white hair, but some people have brown hair. Also, most people with albinism have visual impairment. And in the Netherlands where a lot of people have pale skin, the skin of people with albinism is not that rare, and that's why the visual impairment is a bigger issue here in the Netherlands, but in Africa where most people have a darker skin, you can really see it when someone is different, has a different appearance.

Over there it's more a point of discrimination because people have a lack of education of what it is and how people or parents with dark skin can have white child.

Andrew Stroehlein: Okay. Well, let's move to Africa then, and also with me here is Grace Rububula from Tanzania who works on albinism in Tanzania, which as Lisa said is, it's the same issue. It's the same from the medical perspective, but obviously from the social perspective it's completely different.

Grace Rububula: In Tanzania the concept of albinism is not very common and very clear to all people. Most people lack knowledge on albinism and of course it is an issue, which in most of the schools, it is not taught. We don't learn about albinism at school level. So it becomes an issue because many people lack the knowledge on understanding why can one get a child with albinism and because of that lack of knowledge now people tend to discriminate, "How can one with the black pigmentation bear a child who is white?," a child with albinism.
Now, it starts from the family because of lack of knowledge, which have led to discrimination among the community where people with albinism are looked down at and what we are trying to do as an organization is to create awareness among the community to understand albinism, but also to understand the causes of albinism and the roles and responsibilities of community members within the country so that people with albinism cannot be discriminated, can be taken…

Andrew Stroehlein: What kind of discrimination? When you say they're discriminated against and they face these uphill struggles, what kinds of discrimination do they face? What are some examples maybe?

Grace Rububula: You see sometimes people feel like if you have a child with albinism it can be bad luck. It’s bad luck. And then it's like people will not like to associate much with people with albinism because of that. Of course, because of low knowledge. They feel that maybe it is something which can be transmitted from one person to another even if you don't relate. So we really need to educate people to understand, and of course, we all know that people with albinism, they're facing challenges, especially with their skin.
They need to get protective gears, which can assist them to get away from the sun rays, but the community members are not aware of that, so people with albinism will continue with that challenge. Those are the ways how people with albinism are being discriminated.

Andrew Stroehlein: Let's move on to the other person in the room here with me. Jonathan Pedneault who is my colleague at Human Rights Watch. And Jonathan, you've worked in Tanzania as well, and particularly seeing the effects albinism has. Children with albinism in particular. Can you maybe describe some of your research and what you've been doing?

Jonathan Pedneault: We were in Tanzania and Mozambique in fact, looking at the situation of children with albinism and the types of challenges that they face growing up with albinism in East Africa. It's really interesting because in East Africa you have a much higher prevalence of albinism than almost anywhere else in the world. In Europe, North America you have about one person in each 17,000 - 20,000 that has albinism, whereas in Africa, you have one in every 5,000 to 15,000 births. So it's a much higher number of people with Albinism in those countries.

I would say that they face three categories of challenges. The first one of course are the health challenges associated to their condition. It's the sun rays, it's a higher chance of having skin cancer if you're not able to protect yourself from sun rays. The second set of challenge comes from the community. It's parents as Grace described who are insecure about having a child with albinism. Why? "My skin is black, my partner's skin is black, and then the baby is white. How is that possible?"

You have a lot of fathers who unfortunately will abandon their partner and the children because they think at times that the mother cheated on them. You have mothers who are ashamed or family members in the mother's family who are ashamed and will try and hide the children away for a long time. There were children who were born with albinism and killed immediately, and then there is a set of beliefs in Tanzania, in Kenya, in Mozambique, in East Africa, in Africa in general I would say, whereby people believe that people with albinism hold special powers.

That they are ghosts, that they cannot be killed, that their skin or their body parts can be useful to accumulate wealth or to attain a political position or to solve any kind of illness. So there have been people in Tanzania and in Mozambique, Malawi who have been hunting people with albinism and especially children with albinism because they are so vulnerable. And so there's been a lot of killings of people with albinism and that's obviously part of the challenge.

The third challenge is the state's response. In Tanzania, the government has been responding to this crisis, these killings of people with albinism, but the way in which they responded to it also carried a number of additional challenges. Children were separated from their families, brought to these temporary holding shelters, which are basically camps surrounded by fences.

Andrew Stroehlein: What was the justification for taking them away from the family? Is it like security and just saying, "Oh, we can protect them here in these gated camps."

Jonathan Pedneault: Precisely. It's the typical dilemma between security and freedom. On the other hand [they]'ve been taking away the freedom of these children to be with their families, to be with their community members in order to protect them from people who meant them harm, but in so doing of course that created conditions, additional conditions and challenges for these children. Separated at a very young age from your family, your friends, so those are things that we would look into.

Andrew Stroehlein: How much effort is the Tanzanian government spending? How much effort are they putting into holding accountable those who are actually committing the violence? Because the way to protect them of course is education as Grace mentioned, but also some kind of criminal process that actually finds those guilty. And if people are surely going to get caught and prosecuted, that's important too.

Jonathan Pedneault: I'd say that in Tanzania, it's been an uphill battle, but things are getting better, I think. Ten years ago, you had rather significant numbers of people with albinism were killed. Perpetrators got away scot-free. There was no process to either go at the root of the problem, which is all of these beliefs and these beliefs in the magic of the body of people with albinism, but now the government has ramped up its response. They have criminalized of course such types of killings.

Andrew Stroehlein: But is it a special type of crime? I mean, killing a child is crime regardless.

Jonathan Pedneault: Absolutely.

Andrew Stroehlein: Have they made some additional-

Jonathan Pedneault: They have. There have been prohibitions now on what you call traditional healers or traditional doctors, which were seen by some people as being the ones who were communicating these rumors or these false beliefs. Those people have been forbidden from doing so. People who continue to do so were prosecuted. One of the things is that, again, these beliefs are quite old and these traditions have been there for a long time.

People with albinism were likely disappeared. Children with albinism were likely disappeared before sensitization came, before organizations started to do outreach to the communities, but it was very much kept at the family level or the community level. Meaning that if a child with albinism disappeared, was killed, that was not necessarily seen as a crime by the community, so people will not necessarily report it to the authorities.

This is changing. That's very good. People in Tanzania are becoming more and more aware. There's still a lot of work to be done, but there has been a lot of improvement. That's not the case in neighboring countries. Mozambique, Malawi, Burundi, the challenges remain very much present there. Killings are continuing.

Andrew Stroehlein: So in that way Tanzania is a few steps ahead and maybe kind of a model for the direction the other countries have to go?

Jonathan Pedneault: I think several people would say so, but yet again, the response of the Tanzanian government has been slightly imperfect. We're still-

Andrew Stroehlein: It’s mixed.

Jonathan Pedneault: Yeah, it's mixed. We're still hoping to see the government of Tanzania take measures to both protect, but also ensure the rights of the children to be with their families are also protected.

Andrew Stroehlein: Okay. Perhaps if each of you could briefly tell me a story of a person with albinism that's affected you and really has brought home the human rights aspect of this issue in the story. Grace -

Grace Rububula: Through monitoring visiting, going down to the community, visiting family, I met with the family where a child was 10 years old. According to Tanzania education system a child is supposed to go to school at seven years, but the child was just inside the house, not going to school because the family thought [because] he has albinism, he was not supposed to go to school. But again, when we talked to them, it was also associated with fear: who will take care when the child will be going to school or coming back from school?

From there, we advocated that by visiting the nearby school and talking to school teachers and of course families, family members, and there is that arrangement at the school where now the child is going to school accompanied by the fellow members, fellow students who are living nearby. They go together to school and then they come together. At least doing that the child is now able to go to school. If that was one, who knows in other areas.

It's an issue that we really need to go down, like to go down to the community members where sometimes they don't get these messages, they don't get information so that they can allow kids to go to school.

Andrew Stroehlein: Thank you Grace. Lisa, if you could maybe highlight one person with albinism that you know. Their story and maybe how the rights issue has come to the fore with their particular story that affected you.

Lisa Luchtenberg: Well, human rights violations are not common here in the Netherlands on albinism, but discrimination still is. I can give an example of that. Well, I have albinism myself and when I was younger and it was summer, I was just walking the streets or something like that people were saying, "Do you ever come outside?" Or calling me white or that kind of stuff.

And also the visual impairments at school, sometimes teachers don't want to help me with providing the information in front of the classes, but in the end, here you can ask many people for their help, so in the end it always works out well, but still, if you're growing up, it's harder that you look differently or that you get socially excluded by other children sometimes.

And there's one other short story I would like to tell you.

Andrew Stroehlein: Please.

Lisa Luchtenberg: When I was in Tanzania last year, I met this girl and she's so incredibly powerful, but her story is horrible. It's not only the fear that she lives in, but also she was raped many times because also, in some African countries they believe that if a man has HIV and they have sex with a woman with albinism, they will be cured. This woman got raped many times and it's just horrible to hear and she's so strong and so powerful and just really-

Andrew Stroehlein: Just to be a target like that it's really incomprehensive.

Lisa Luchtenberg: Yeah.

Andrew Stroehlein: Jonathan, we turn to you and your work. You've met so many people with albinism and the families and communities. Is there one that particularly strikes you and their story that speaks to you?

Jonathan Pedneault: Yeah, there's definitely the 16-year-old boy that I met in a hospital. There was this organization doing this medical screening or the screening for skin cancer. So a lot of children and people with albinism came to that place so we were allowed to join them and do a few interviews. And this 16-year-old boy... He had several sores on his skin, he had been exposed to the sun quite a bit more than he should have.

His story was just really impacting because his whole life until that point had been defined somehow by the fact that he had albinism and his whole life was far from happy or perfect. When he was six, his parents died. That's obviously separate, but then he went to live with his grandfather and even his grandfather was discriminating against him, calling him “Chinese” or “Mbolimbwelu,” which means “white goat.”

Then when he was about 10, the killings started and the school where he was going said, "You cannot come to school now. It's too dangerous. You have to go to the temporary holding shelters." These shelters that the government created. So he was forbidden from attending school, but his grandfather wouldn't send him to the shelters nonetheless. So then he was forced to work in the field, caring for the cattle for his grandfather who was drinking the money afterwards and mistreating him.

But thankfully at some point, this young boy who was living in a very isolated community on the way met with this man who did not have albinism, but had a child with albinism. And when the man saw him, he said, "How are you walking like this without a hat or any protection. You cannot be doing that." And the young man, Juma, that is his name, he didn't know any of that. He had never been told that if you have albinism, you need to protect yourself from the sun or eventually find sunscreen.

All he knew was that albinism potentially equated death. That's all he knew about this condition, but thankfully because of outreach efforts by organizations like KCBRP and others, he suddenly met with this completely relevant person who knew about albinism and directed him to the right resources. In fact, to the hospital where I met him. So that was quite impactful for me.

Andrew Stroehlein: That takes us to what we're doing here now in Amsterdam, Human Rights Weekend. What are the messages ... If you had to crystallize your message to what you want people to hear in your session today at Human Rights Weekend, what would that be? A couple sentences will do. Grace.

Grace Rububula:    What we want people to hear is all about protecting and promoting rights of people with albinism. They are people like other people. We should respect them. We should respect their rights. And this should not be done by one organization. We need joint effort because like you have heard, it started in Tanzania, but in Tanzania we have reduced it and then it is going to other countries. So it is not an issue of one country.

We should join effort to ensure that people, they really understand all about albinism and the causes of albinism. And then we should also protect the right from the family level to the higher level. Even how policies ensure that they protect that right. That is what I can say. We really need to join hands.

Andrew Stroehlein: Okay. Jonathan, what would you add?

Jonathan Pedneault: Well, I'd say there's this fantastic woman with albinism called Ikponwosa Ero, she's the special rapporteur for the UN [UN expert] on the rights of people with albinism. And for quite some time now she's been doing these campaigns to try and ensure that at the sub-regional level in eastern Africa, there is this joint strategy to protect the rights of people with albinism. I think one of my key messages here in Amsterdam is certainly to call on people living in donor countries like the Netherlands, Europe, North America to really put pressure on their governments to support Ikponwosa Ero's proposal.

She's been going around in several countries. She's been engaging with the authorities, but still, Tanzania has gotten the message, but I think there are still governments in the region that are not necessarily seeing that as a priority.

Andrew Stroehlein: Do you think donor countries are getting the message as well or do they see this as a priority?

Jonathan Pedneault: I think there's a growing awareness of the problem, but I think the problem has really been associated with Tanzania somehow. The stories of the killings 10 years ago have really emerged in Tanzania. I think the response in Tanzania has been, there is a response to begin with. So there are organizations that are doing this work, that are receiving international support. But as Grace was mentioning, the problem has been spread across the region.

It has decreased in Tanzania and it has increased in Malawi, Mozambique and other countries. I think it's important for donors not to see this as a specifically Tanzanian problem, but see it as a continental problem and really respond to it in other countries as well.

Andrew Stroehlein: Okay, great. Lisa, any last word?

Lisa Luchtenberg: Yes. I can also add something to that. It's also important that you think by yourself how you maybe can change something about it. By starting your own knowledge about albinism and what it is because if we look to western films or series, people with albinism are always in these movies like they're the bad guys.

Andrew Stroehlein: Yeah. I can think of a few. Wasn't it ... What was the Dan Brown?

Lisa Luchtenberg: “Da Vinci Code.”

Andrew Stroehlein: Wasn't the bad guy in that someone with albinism?

Lisa Luchtenberg: Yes. In that way-

Andrew Stroehlein: It's awful if you think about it.

Lisa Luchtenberg: Yes. You're improving this stigmatization and discrimination. It's important that also the media, documentaries are going to think differently about how they communicate about albinism and how we talk about albinism. And also we're talking about people with albinism instead of albinos, because if you're saying albino, the person part is away, and if you're saying the person with albinism, then it's clear for everyone that we're speaking about a person and not an object.

Andrew Stroehlein: Talk about a person first. Absolutely. Well, I think that's a very good place to wrap up. If people want to know more about albinism worldwide they can go to our website, hrw.org and look up more and we can put some links in this video to other organizations as well to make sure that people can follow up. Thank you.