The case for persons with albinism in Rwanda

As the world marked International Albinism Awareness Day on June 13, one question kept lingering in my mind: Who should be the right person to tell the story of Persons with Albinism? Is it “they” that should be left to blow “their” own trumpet and bring “their” plight to the attention of the world, or must it be the other way round? That question stayed on my mind after I met Marie-Clementine Dusabejambo, a budding Rwandan filmmaker in March this year. The event was a film screening gala to showcase the winning films for the 2015 Script and Film writing competition organized by the German Cultural Center in Kigali (Goethe Institut). Dusabejambo’s film, A Place for Myself, which tackles the subject of Albinism emerged second-best entry. When invited on the Century Cinema stage to make a presentation about her film then, Dusabejambo literally declined, reasoning that she was not the right person to speak about the subject her film addresses. Instead, she invited a friend, Valentine, a person with Albinism. Valentine’s three-minute speech took everybody in the auditorium unawares, and actually got a few shifting uneasily in their seats. She chose to speak not just for persons with Albinism alone, but all marginalized segments in society – what she termed “others”. “Usually that is people with disability, women, poor people – all those we think are different from us,” she explained. “Diversity is the spice of life, right? As long as we still focus on our differences, this inclusion we’re looking for will always remain in speeches. Let us join together and fight a good fight. This discrimination and stigma we’re talking about tonight to those that we refer to as others is very real, but only those who are experiencing it can describe how painful it really is,” she concluded. Valentine may not have acted in A Place for Myself, but such was her contribution at the screening gala. “What I learnt from Valentine is to seize every opportunity that you have,” Dusabejambo begins to talk about Valentine when we meet for this interview on Wednesday. “She lost her parents when she was still a kid, and was adopted by a kind family. That family put her in school but there was a lot of pressure from outside. At school the students didn’t love her because they were afraid of her, so she could have left school but because the family kept on pushing her she finished her university. I think she’s among the first persons with disability in Rwanda to have completed her university studies and it’s not easy. When I heard her story, the way she does not allow to play victim, the way that she fights with life every time, that’s what makes me strong in my work as a young woman in this industry because it’s not easy and you can’t get anything for free.” Started on a bus The plight of persons with Albinism first caught Dusabejambo’s attention when, about five years ago, she heard of a series of killings in neighboring Tanzania targeted them. “When you’re a story teller sometimes you hear something and it speaks to you directly. When I learnt of what was happening in Tanzania I started questioning myself how this can happen. At the same time I was wondering why there were no Albinos in Rwanda because at that time I couldn’t see any.” One day, while on a bus, the subject of Albinos came up. “I was with a friend, we were talking in a bus, and then there was a woman behind us and she asked if it’s true I’d never seen an Albino. She gave us her number and then when we went to her house we found out that she has an Albino child.” But more shock still awaited the young filmmaker. “I discovered that she has eight children and three of them are Albinos!” That was how the idea for the film was born. The film’s central character is six-year old Elikia, one of the three siblings with Albinism, while her mother acts out the same role in the movie. “Having both of them on the set was really a blessing for us. We shot the movie in only three days. We were calling her (Elikia) Angelina Jolie on the movie set because she acted so naturally. She did not need a script. Most of the scenes in the movie happened in real time,” Dusabejambo explained. The film tells the story of a young Albino girl who goes to attend primary school and then other kids mistake her for white. When parents come to the school and see her they know she’s an Albino and start to tell their children all sorts of negative things about people with Albinism. So she begins to resent school, but her mother keeps on encouraging her. Children watching the documentary. (All photos by Nadege Imbabazi) “This movie was partly a tribute to those women who have children with Albinism because this is what they go through every day to protect their children and to give them a chance in an unfair world. There is that relationship between a mother and her kid that keeps surprising me every day.” As a filmmaker Dusabejambo also dabbles into photography, and explains the inspirations for both: “I’m attracted by people’s faces and portraits. I’m interested in connecting with people and knowing their emotions. For me connecting with people is what makes me because people have lived many experiences so it helps me grow. You have something that I don’t have, so I’m looking for that something.” She is grateful to the woman for having connected her to many other mothers of children with Albinism in the country. “Now I know almost all of them. We did an event in 2012 with many young people and we reflected mostly on our perceived differences as opposed to just talking about Albinos as victims, how we like to put them in that category of “others” while they can do anything that we can do, even more. It’s only the skin color that changes, but they are smart. There is also this negative energy you receive from people when they see you interacting with an Albino, sometimes I get people asking me if I want to get married to an Albino, those kind of things, but because you know the treasure that person has, you focus on that and ignore what people are saying.” Yesterday, Saturday June 18, Dusabejambo staged a special screening of the film for children, including the school kids that acted in it at the Goethe Institut in Kiyovu. The screening attracted about 100 children, including Elikia, the movie star who turned up with her mother. If and when she consents to a full and exclusive interview with this newspaper, we will gladly share her extra-ordinary story. International Albinism Awareness Day 13 June 2016 was United Nations International Albinism Awareness Day. UN Secretary General Ban Ki-Moon used the occasion to call on nationals of all countries to end the discrimination that threatens the wellbeing, health and even very lives of people with albinism, and to provide programmes that will enable them to play a full part in society. “I call on all countries and stakeholders to recognize that human rights apply to all people everywhere, including people with albinism,” Ban said in a message to mark the secondInternational Albinism Awareness Day, since the UN General Assembly adopted a resolutiondedicating 13 June to this issue. “Albinism has often been subjected to mystification, triggering erroneous beliefs and myths. The completely mistaken belief that potions or amulets made from the body parts of people with albinism have magical powers has given rise in some countries to a demand for such human remains. This has led to attacks, abductions and killings of people with albinism and even to the theft of their bodies from graveyards.” The United Nations contends that, thanks to the long history of discrimination and stigmatization of persons with albinism, in some places, people with this condition may live in abject poverty, without access to basic services like accommodation, healthcare and education. Albinism is a rare, non-contagious, genetically inherited condition which occurs worldwide regardless of ethnicity or gender. It most commonly results in the lack of melanin pigment in the hair, skin and eyes, causing vulnerability to sun exposure. This can lead to skin cancer and severe visual impairment. Both parents must carry the gene for it to be passed on to their children, even if they do not themselves have manifestations of the condition. A young boy with Albinism watching the documentary The prevalence of albinism varies across the world. According to the World Health Organization, estimates vary from 1 in 5,000 to 1 in 15,000 people in Sub-Saharan Africa. In Europe and North America, 1 in 20,000 people have the condition according to the NGO Under the Same Sun. However, data on the prevalence of albinism by country remains scarce. The term “person with albinism” is preferred to “albino”, which is often used in a derogatory way. Compiled by Moses Opobo

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The case for persons with albinism in Rwanda