Fighting Against Stigmas and Superstitions about Albinism
Myths and superstitions about persons with albinism are putting this population at greater risk during COVID-19. In some parts of Africa, persons with albinism are hunted and sometimes killed because of beliefs that their body parts can alleviate sickness and bring good luck. In Rwanda, the Organization for the Integration and Promotion of People with Albinism (OIPPA) is fighting against such stigmas and superstitions, fearing an uptick of violence against persons with albinism as people become desperate for a coronavirus cure.
Overall, the most pressing issues facing persons with albinism in Rwanda are a lack of access to sunscreen and protective gear like sunglasses and long-sleeved shirts. Due to discrimination, Rwandans with albinism also face challenges related to education, health care, and economic opportunities.
Founded in 2013, OIPPA operates in six districts in Rwanda, reaching thousands of people with albinism through its advocacy efforts and directly serving 215 people with albinism through direct services. As an example, in 2019 OIPPA was able to supply sunscreen to hundreds of its beneficiaries, and they have provided economic opportunities in soap making and other income-generating activities. Overall, OIPPA has created a sense of community and belonging among children and adults with albinism in Rwanda who once felt isolated and alone.
Introductory synth music starts with a blue screen. In the middle, four blocks merge and show the letters UNDP– United Nations Development Program – with UNDP’s logo. A green screen with black letters says: Disability Rights Fund. It cuts to a pink background and then a green box pops on and yellow and white texts says: OIPPA Presents. A woman with albinism wearing a yellow jacket and blue hat is to the right of the green box. Next screen says: “The film documentary,” and to the right is video of two children with albinism sitting on a young man’s lap. The girl is wearing a pink sweater. The boy is wearing a blue baseball cap.
Cut to video of a woman with albinism wearing a pink-and-blue scarf on her head. She says, “Neighbors used to call me the white woman…” On the side, a yellow title card with purple and white letters appears with her name: Nyirabikari Sphora, Beneficiary, OIPPA, Musanze. She continues: “or useless person when passing by.” She is surrounded by what looks like framing from a camera, and in the bottom righthand corner, a red record button blinks.
A black screen appears with bright, light green text that says: “The improved life condition of the people with albinism in Rwanda.” There is what looks like a sunburst in the center.
Cut to a green screen with OIPPA logo. The logo is round with the shape of a sun in the middle. It’s surrounded by the words: “Organisation for Integration and Promotion of People With Albinism. OIPPA.” The words “Economic Empowerment, Education, Healthy, Family Care” fly onto the screen with images of OIPPA’s work from the field.
Cut to a man with albinism sitting in a chair with a green sun hat and gray pullover. Yellow title card with purple and white letters appears on the side with his name: Munyakaragwe Felicien, Beneficiary, OIPPA, Musanze. Felicien says, “If OIPPA were there as today, I would be a master’s degree holder.” Music continues and shows picture of a woman washing clothes and more images of OIPPA’s work.
New melancholic piano music starts. Cuts to two women with albinism sitting outside. One is on a blanket and the other is in a chair and peeling potatoes. Then cut to kids in a village. The one in the foreground is wearing a blue sun hat and beige T shirt. More images of people in a village among crops. Voiceover says: “People with albinism used to be excluded from Rwandan community and neglected. So, they felt lonely.” A child with albinism sits against a wall and voiceover continues: “This caused the violation of the rights of people with albinism due to poor mindsets of some Rwandans who treated people with albinism as if they are not human beings.” The woman who appeared early on the screen with pink head scarf and now with a mask comes out a front door. Cut to a group of people with albinism – five adults and four children standing in a field.
Cut to two men sitting in what appears to be a meeting. One man is wearing a mask and a suit. The other is a bald man with albinism wearing sunglasses and a mask. Voiceover says: “The organization that took them from back yards and started socializing with others…” Cut to a man wearing a leather cowboy hat and striped shirt greeting a young boy and his mother in a village. Cut to a closeup of someone stirring a bucket of blue soap. Voiceover says: “The organization that empowered them to self-employ.” Cut to a man riding a motorbike wearing a helmet. Cut to close up of man wearing a helmet and a pair of glasses. *Sounds of the motor* Cut to a man in an army green cowboy hat and sunglasses smiling at the camera with his arm around a woman. Voiceover says: “The organization that brought back their hope.” Cut to a woman with albinism in a green dress laughing.
A group of adults and children are gathered outside and singing and playing music. Voiceover says: “And they no longer feel shy to expose their talents publicly.” A woman and group of children are gathered around the man wearing a cowboy hat. He is holding a wooden instrument and singing the lyrics: “He gave us Paul Kagame and we all love him. God is good. God is very good. Ohhh he supported us in many things, God is very good.”
Voiceover continues with more shots of OIPPA in the field: “Not only these, but it also became the voice of voiceless for a couple of years ago.” A green screen with black dots appears. Voiceover says: “This is OIPPA,” and logo appears again.
Three people with albinism are raising their hands and saying: “OIPPA is our home.” Two men are reading – one of them is the same man with the green sun hat. *Smooth melody continues* A green sign with white text appears. Camera pans up to OIPPA logo. Narrator says: “OIPPA is the organization that fights for the rights and socio-economic welfare of people with albinism in Rwanda.” Cut to the same woman peeling potatoes. Voiceover says: “It was established in July 2013. This organization operates in six districts, such as Gasabo, Kicukiro, Nyarugenge, Musanze, Kayonza and Rutsiro. It reaches 215 people with albinism.” The camera shows the village in a hilly area with houses. Children are sitting, and some are looking at the camera. Voiceover says: “It reaches 215 people with albinism, but its advocacy positively impacts on more than 1000 people with albinism’s life across the country.” A woman and man walk towards a house. A pan shot of a mountain with houses on it. A man is putting cream on his face. A woman in a green head scarf and yellow shirt and green skirt is washing clothes in a bucket.
A bald man wearing sunglasses and wearing a suit appears to be giving a speech behind a podium. He says: “This organization was established in 2013…” His name appears on the side: “Hakizimana Nicodeme, executive director, OIPPA.” He continues to speak: “after noticing many challenges, faced by people with albinism, for example: being discriminated from Rwandan community, lack of sun lotions [shows a lotion for people with albinism], challenges related to education, healthcare, and economic issues in their families.” Cut to a young person in a blue hoodie reading something at a desk with a stack of notebooks on it. Cut to a person walking past a house and past the camera. He is wearing a yellow baseball cap and a red-and-black-striped shirt.
Cut to black-and-white video of a child wearing a hoodie and then to a child with albinism eating and then a man laughing and smiling. Voiceover says: “Since 2015, people with albinism from sub Saharan region started being attacked by hunters who wanted to kill them and rape woman and girls with albinism…” Camera is zoomed on the eyes of a young child. A person is putting lotion on another child with albinism. More shots of kids with albinism. One is writing at a desk. Others play ball in the street. Voiceover continues: “due to wrong mindsets for them saying that their bones contain gold and having sex with a woman with albinism cures HIV-AIDS.”
Green screen appears with white numbers and reaches up to 2016. Voiceover says: “The report of United Nations Commission on Human Rights, released in 2016, highlighted that a whole dead body of people with albinism cost $75,000, while a leg or an arm cost $2000 in Tanzania.” White text appears on the green screen: “The hunters of albinos sold a whole body ($75,000). The hunters of albinos sold a leg or an arm ($2000).”
Cut to black-and-white video of kids playing in the street. Voiceover says: “This caused the killings of people with albinism in Tanzania from 2000 to 2016.”
A green poster appears on a brown wall with text explaining OIPPA’s vision and mission. Shot of someone from behind standing in front of it. Voiceover says: “OIPPA played a great role to protect and fight for a socio-economic welfare of people with albinism…” A person in a sun hat and red pullover is typing. Then it cuts to two men in a meeting, both wearing suits. Voiceover says, “through advocacy, media and elsewhere.”
Hakizimana Nicodeme, the executive director of OIPPA, stands in front of an OIPPA poster. He says: “What impressed us to establish this organization is the killings against people with albinism in the region like in the East Africa and Great Lakes.”
Cut to a poster of OIPPA’s vision. Then a shot of a woman in a purple scarf shaking the hand of a person with albinism with a book on their lap. Nsengiyumva Jean Damascene, executive director, NUDOR, appears on screen. He is wearing a blue-and-pink striped shirt with a flowering bush behind him. He says: “OIPPA played a great role in advocating for them widely emphasizing that someone can intrude in the country and kill people with albinism, although the country is secure. Someone can hear those rumors and feel like they are precious deal and immediately get involved in the killings. It’s OIPPA that lead on that.”
The man wearing a leather cowboy hat and red-and-brown striped shirt is singing and playing a wooden guitar-like instrument. Children are gathered around him, listening to his song: “We thank Lord for making us one, but for our own, we could not know each other.” Shots of the groups as they continue to sing: “Ohhh white and black people, he made us one, but our own, we could not know each other.” The person gives the wooden instrument to one of the children and sings: “Ooh, Peneul and I, he made us one, but for our own, we could not know each other. We thank Lord for making us one, but for our own, we could not know each other.”
The music changes to a more upbeat melody. People in the village smile with their children. We see people walking. Cut to women washing clothes in buckets. Voiceover says: “In the past years, people with albinism were not valued as other Rwandans. This act made them feel lonely and they were nick-named defamatorily.” A woman with albinism appears on screen. She is wearing a blue-and-red striped sweatshirt and is standing in a field of palms. Her title comes on: Mukamana Vumiliya, beneficiary, OIPPA, Nyarugenge. She says, “Since 1994, person like me didn’t have any value. It means that parents hid him/her after giving a birth or felt like it’s a taboo to beget a child with albinism.”
A man with albinism appears on screen. He is wearing an army green sun hat tied around his neck. His title comes on: Munyakaragwe Felicien. He says, “They called me a white person or colored person. They are so many.” *More intense guitar music* Cut to shots of him feeding his cow. Cut to Felicien embracing his child.
A man sits in an oversized blue chair in what looks like an office. He is wearing a suit and has glasses and a closely trimmed beard and mustache. His title comes on: Mr. Stephen Rodrigues, UNDP Resident Representative. As he talks, shots of people with albinism are woven throughout. He says: “People with albinism is a unique group within the community of people with disabilities. I think for centuries people with this albinism have been subject to all kinds of misunderstandings and superstition. In some countries there’s violence against them, they’re hunted sometimes for medicinal purposes and so on, but at the heart of it is discrimination.”
Cut to a family of seven siblings and their mother and then to a closeup of one of the brothers with albinism wearing a blue-and-white sun hat. Then cut to shots of him with mother and siblings. Then shots of siblings around a table doing homework. Voiceover says: “A mother was treated disgracefully by family members and friends when she begot a child with albinism, thinking that she cheated on her spouse or owned satanic power.” A child is holding a pen and writing on a paper. Voiceover continues: “On the other hand, children whose parents albinism were hurt by their colleagues.” Cut to a woman holding a child with two other children surrounding her; woman puts a stool on the ground.
A woman in a black leather jacket is sitting in a living room. She says, “For the first time, it was difficult because family members went away from me. They called me a prostitute, saying that I slept with white men. It became a cold war.” Her name appears on screen: Murekatete Claudine, Beneficiary, OIPPA, Musanze.
Cut to shot of same family with siblings with albinism. Cut to a shot of a woman sitting in the woods and wearing a green checked head scarf and a gray T shirt. Her title appears on screen: Akingeneye Chantal, Beneficiary, OIPPA, Musanze. She says, “They said however they want, she has begotten a stupid, she has begotten a white child. Is that one a child? Because my husband stood by my side, we helped each other, and we kept standing firm.”
A man sits outside a mud/brick home. He is wearing a brown shirt. He says, “At my school, I can’t accuse any one because he/she says that my father has albinism, as I am grown up. But it hurts me a lot when they are teasing me.” It cuts to a wide of him and his mother and father, who has albinism.
Three people sit in front of a wall inside. A person wearing green t shirt says, “They did not tell me that because I have a sister with albinism except that some people did not appreciate him and no one could carry him, but they finally changed their mindsets.”
A young person with albinism in a recording window effect says, “Mum, I am going to read for you a gospel word by Luke 6:36.” He is wearing a blue hoodie. He continues, “Be merciful, just as your father is merciful.”
*Slow Piano music* Green screen appears. Voiceover says: “Results from Population and Housing Census conducted in August 2012 revealed that 9% of children with albinism due to limited teachers specialized in special needs education, learning space difficulties, families’ issues and not to socialize with their classmates.” The screen shows an arrow and text says “Children with disabilities who dropped out of school. 9 percent.” More text on screen: “Insufficient knowledge on special needs education. Environmental influence. Socio-economical influence.” A woman is washing clothes. Voiceover continues: “And there are some children with albinism who dropped out of school due to discrimination against them and unfair support by their teachers and colleagues.” Woman washing clothes smiles at her child, who is sitting and sucking a thumb.
*Piano music in the background* Cut to Mukamana Vumiliya’s interview. She says, “There were more challenges indeed! Among them, there were some challenges that caused me to drop out of school.” She starts to cry and says, “And I was not aware of my rights, but now I am. Although I did not complete my studies, others will. This is advocacy, I can make for them so that they can get the quality of education. We cannot face the same challenges.”
Gasangwa Obed is sitting on a beige couch in an army green sun hat tied around his neck and a black coat with white stripes. He says, “After moving to this place there were our neighbors. When they saw us, they said that we are animals, and they went away from us. But slowly by slowly, they became familiar with us.”
Iradukunda Bertine is sitting with her siblings. She is wearing a beige hat and a purple pullover. She says, “I could meet someone and insulted me a white person and failed to be patient, I immediately became rude to him/her.”
Cut to a young man wearing black-and-white checked shirt and a sun hat. He says, “The challenges that I faced was the discrimination against me and lack of sun lotion.” He walks through the doorway carrying books and pencils. He sits with two other people and reads. He is feeding grass to his cow. *Piano music continues* The green OIPPA poster appears with the text “vision.” Voiceover says, “Before the establishment of OIPPA, people with albinism were not able to get sun lotions, sunglasses, and sun capes…” People are putting on lotion and hats. Voiceover over continues: “because they are too expensive to afford them. And they suffered from the sore and failed to work during sunny period.” Cut to people harvesting outside and more people putting on lotion. *Piano music intensifies* Cut to a woman with albinism in a yellow shirt and a baseball cap. She says, “It was difficult for us to go to school during sunny period because we did not get sun lotions.” Cut to a wide of her peeling a potato and then back to a closeup.
Rukundo Janvier, beneficiary, OPPA, Rutsiro, wearing a blue hoodie says, “When I was learning without sunglasses it was difficult to see the blackboard. I only sat in front of while doing a quiz and he gave me more 15 minutes. He could not refuse to give me more time because I was very smart. In fact, it was a challenge.”
Ntihinyurwa Olivier is sitting on a beige couch with black sunglasses. His title says: OIPPA, Kicukiro. He says, “Before I was scared to say I am not seeing the blackboard. I felt a nervous about that. I could not tell neither a teacher nor a student that I can’t see the blackboard. Sometimes our teacher gave us an immediate quiz after completing all units. You know they gave us a quiz about notes that I did not take due to being nervous to inform my teacher on my problem. They helped me with nothing so I always stayed behind others.”
The woman in a pink shirt and purple head scarf reappears in front of a house. She says, “I anointed myself with lotion that I bought for 100 Rwandan francs, but it was useless to my body.” “How was it?” asks the interviewer. The woman replies, “I have told you that my body was sore from the sun.”
Slow-motion shot of hands opening a jar of sunscreen. *Music shifts to more somber tone* The woman puts the cream on her hands and face. She greets another woman near a clothesline, and they laugh. Landscape in the background and then scattered images of people in a village. Voiceover says: “To meet the sustainable development goals, government and its partners ensure that no one is left behind and heard the voice of disabled persons including people with albinism.”
A woman comes out of the house wearing a checkered shirt. She opens a sunscreen lotion. A man puts the cream on his body, and voiceover says: “Now some people with albinism have been elected to lead local government institutions although they are limited compared with advertised vacancies.”
Cut back to Munyakaragwe Felicien’s interview. He says, “I am in charge of information in my village, and I am also a Isibo leader.”
Mukarusine Claudine, vice president of OIPPA, Rwanda, appears on screen. She is wearing black sunglasses and a burgundy blouse and is standing in front of a burgundy wall. She says, “Another thing is that they can’t give him a job to get a living and it’s still a big challenge because the community still have misperceptions that we cannot afford various activities. They should be facilitated to expose their abilities so that they can get jobs in the public or private sectors.”
Pan over a landscape. Munyakaragwe Felicien is back on camera. He says, “It helps me attend the government’s meetings and meet district leaders and we get to know each other so that I cannot feel nervous to be in the public. And among influential leaders in Nkotsi Sector…” Interviewer asks. “What do you mean by influential leader?” Felicien replies, “He’s a person whose voice is heard by everyone, and they implement his idea. I am also an entertainer in Nkotsi Sector. My secret is that after realizing that the government of Rwanda recognizes me, I started being motivated and happy.” Felicien’s title comes on again: “Munyakaragwe Felicien, beneficiary, OIPPA, Musanze. “When I put on the long sleeve shirt that OIPPA gave me, I feel very smart and I no longer feel lonely. When they see me, they realize that I am determined.” Felicien feeds a cow some grass.
Voiceover says: “The government of Rwanda highlights that among the Sustainable Development Goals, there is the poverty eradication through Girinka Munyarwanda programme projects and other projects designed for citizens’ development, but people with albinism complain that they don’t benefit from them.” A woman with albinism stands outside her home wearing a green dress. She says, “When they were building houses for vulnerable people, that time I was among vulnerable ones the zone leader said: ‘We can’t support that one. What can we support her for?’ I lost the house like that, but I was on the list.”
Cut back to interview with Stephen Rodrigues, UNDP Resident Representative. He says, “As a society if we are to achieve the Sustainable Development Goals by 2030, we have to look at those groups that are most at risk of being left behind and people with disability are one of those groups.” *More intense music plays* A woman with a red blouse and a hat is again typing at a computer.
Cut to green OIPPA poster. Children eat at school. Voiceover says, “After the establishment of OIPPA in 2013 the rights of people with albinism started being respected and brought them together to share their experiences.” Cut to people eating around a table.
A woman in a courtyard wearing a blue blouse and a pink head scarf says, “I thank OIPPA for bringing us together and we met our colleagues whom we did not know.” Her name appears on screen: Nyirabikari Sphora, Beneficiary, OIPPA, Musanze.
Another woman with a purple head scarf and yellow shirt sits between her two children. She says, “What it helped me…You know my husband told me that I am the only mother or of three, they were many. And I realized that he is right, but I tried to be strong. After the establishment of OIPPA, I realized that I am not alone, and I helped some of them be strong.” Her title comes on screen: Akimpaye Riziki, Beneficiary, OIPPA, Kicukiro.
Shots of OIPPA in the field. Voiceover says, “Now some of them have happier families, others have completed high school and university studies.”
*Piano music* Children talk in a forest supervised by a young woman wearing a hat. They stand around in a circle holding hands, standing, and singing. They appear to be playing a game. They spin in a circle.
Voiceover says: “In empowering people with albinism OIPPA we taught them to make liquid soaps and lotion so that they can get money to buy some lotion for their children without waiting for the association’s support.” Closeup shots of blue soap in a bucket. Shots of someone putting on lotion.
Cut back to interview with Stephen Rodrigues, UNDP Resident Representative. He says, “The third area that I want to mention is the economic empowerment of persons with albinism and here again we’ve been supporting some of the groups and the individuals to embark on economic activities like making liquid soap. There’s one lady who has a family of nine and three of the kids have albinism and she is now making liquid soap and selling and it. When you talk to persons like her and hear the story of how her life has transformed and how she is better able to get the health care for her kids, to send her kids to school, to take better care of her family, that’s when it gets really rewarding and you begin to see the remarkable progress that is being made.”
Cut back to interview with Akimpaye Riziki. We see her mixing blue soap in a bucket. She says, “I am among parents were trained by OIPPA to produce liquid and solid soap. We were trained to produce painting colors, Vaseline jelly, and it will impact us because we were jobless. After training us, now we manage to produce soap.” The camera zooms in on the soap that the Riziki is making. She continues speaking: “The income helps me raise my children, and get money to buy some lotion for them from this business activity.”
An OIPPA staff person speaks to Stephen Rodrigues in his office. They both wear masks. OIPPA staff person says: “During this coronavirus, there are some people who co-produced liquid soap and got food. For sure this project has improved our life condition.” Rodriques says: “Wonderful. I’m so happy to hear that and I think for me listening to you now, it gives me encouragement, and it tells me that we need to do even more, and we need to expand to other districts as well. You said Musanze and Kigali are doing well, but other areas we need to get to. That phase of the project might have ended, but I’m going to work with the team. We have to mobilize more resources to continue this support. It’s too important, this very important group of people, for us to just end the year so that’s what I’ll be doing with the team. We have to make sure that we continue.”
A man kickstarts a motorbike. He is wearing a green helmet and a sweatshirt half light blue and half dark blue. Voiceover says: “Nduwayezu Jean Paul is OIPPA’s beneficiary. He is a motorcyclist. He stresses that OIPPA empowered him with entrepreneurship skills and engaged in this career.” Nduwayezu Jean Paul stops his motorcycle and appears to be bargaining with a customer “It’s 300 Rwandan francs. Can’t you pay 500, dear?” Voiceover continues: “It was hard for him to get passenger because they wouldn’t go with him after realizing that he lives with albinism. After the OIPPA’s advocacy he no longer faces discrimination challenges.”
Nduwyezu says, “Obviously, some people still have poor mindsets but others who already changed their mindsets understand that we are also human beings because of being together or riding them for a long time. Honestly, others misunderstand it. When I put on my helmet no one can know who I am. But when I remove the helmet’s glass it became a problem. For many times, I put on gloves and a helmet so that they cannot find out that I have albinism. He finds it out when I remove a helmet’s glass and gets scared. When the passenger has poor mindsets, he immediately denies to go with me but also another one could come and got surprised to see you riding and accepted to go with me. I take him to his destination in the VIP way.” Nduwyezu drives away carrying a passenger.
A man wearing a gray suit, a light blue shirt, and a darker blue tie with sunglasses speaks against the background of a forest. He says, “Everyone knows that he/she can’t survive by begging as other persons with disabilities do, so we got motivated to employ ourselves.”
A boy with albinism wearing a gray sweatshirt and standing against a mud wall says, “I am proud of my skin color, different from past years when I was ashamed to go out. I hid myself and was uncomfortable to be in public. I really felt like I was a vampire but now I’m fine and I have dreams that I want to achieve.” His ID comes on screen: Iradukunda Bertine, Beneficiary, OIPPA, Musanze.
Voiceover comes on as a man washes cutlery: “Persons with albinism no longer fear the sun due to the sun lotion that OIPPA timely provided them. This makes their skin smoother, and the sun lotion prevent them from getting skin cancer.” Several people are shown putting on sunscreen. A woman looks into a pink plastic mirror.
Cut to an OIPPA poster. Voiceover says: “Nicodeme Hakizimana, the executive director of OIPPA, says that they did a lot to strive for a better life and the rights of people with albinism.” Cut to video of Felicien in his village and then to a shot of boy with albinism doing his homework. Cut to video of woman peeling potatoes. Cut to interview with Hakizimana. He says, “One mini lotion bottle that can be used in only a month costs 10,500 Rwandan francs. For a family that has three to four children it is difficult to get 30,0000 to 40,000 Rwandan francs a month to buy the sun lotion for their children while struggling to get 3000 for their health insurance. As an organization, we managed to make advocacy here and there, 215 beneficiaries got sun lotions last year, 2019. All of them were provided sun lotions in partnership with UNDP, Kipharma, Humanity Inclusion, and NUDOR but it is still a challenge.” The camera zooms in on NUDOR logo.
The camera is back to Riziki, the woman with a purple head scarf who has children with albinism. She is sitting between two of her children. She says, “They got burned went they got exposed to the sun and suffered from skin sores. They felt pain in their whole body. But ever since they got the sun lotion, their skin became smoother.”
Another beneficiary of OIPPA, Mukamana Vumiliya, speaks standing against a background of banana trees. She is wearing a sweatshirt with alternating red, blue and white bands. She says, “I couldn’t move from home to Nyabugogo because I was ashamed of myself. But nowadays I confidently go anywhere and feel proud of myself.” Shots of people with albinism dressing for a day in the sun, buttoning shirts, putting on hats.
Push-in on sun lotion. Voiceover says: “Providing people with albinism with sun lotion, sun capes, long sleeve shirts and sunglasses, boosted their results of students with albinism.” Some students are shown reading books. Voiceover continues: “It was achieved after advocating for them so that schools can promote a more inclusive education.”
A student wearing a green hat tied around his neck and black sunglasses says, “Before getting sunglasses it was too difficult for me to learn because the sun’s rays reflected back into my eyes and immediately fell asleep.”
Another student wearing a blue sweatshirt and a necklace with a wooden cross speaks: “What I think OIPPA for is it supported me with sunglasses so that I can score good grades and manage to see the blackboard. Although I still have some difficulties, it’s not like before.”
Cut back to student wearing green hat tied around his neck. He says, “Before I scored the last five grades. But nowadays, although I still have a long way to go, I hope that… I am optimistic that my grades will be better because I met good people, focusing on my or their goals.”
A young woman with albinism sits with her siblings, some of whom also have albinism. She says, “Before getting sun lotion, I suffered from skin sores due to the sun’s rays and my classmates started going away from me so that they cannot be infected. But now I don’t have any problem.”
Cut back to the meeting between Rodriques and Hakizimana. Rodriques says, “So tell me a little bit about the support that was provided to some of the children, for them to have eyeglasses. Are you seeing many any benefits from that? Are you seeing any difference?” Hakisimana says, “UNDP is the first supporter we have who provided the eyeglasses for others with albinism. It was not easy for us to educate persons with albinism because they have eye problems but since UNDP has provided those eyeglasses, the performance of others with albinism increased in schools, and the evidence is that in a national examination every student who got eyeglasses has passed the national examination.” Rodriques nods and says, “That’s fantastic.” Hakizimana continues: “We have told that UNDP has provided the glasses to help students with albinism to perform better in schools. To have that support from you makes us able to approach the Ministry of Education.”
Cut to interview with Hakizimana and then video of OIPPA poster. Voiceover says: “Hakizamana Nicodeme, the executive director of OIPPA, stresses that after highlighting the challenge of texts in small characters faced by students with albinism during the national examination these problems were addressed in 2019.” Video of young person with albinism in front and then walking out the door holding books. Voiceover continues: “As a result, they all passed with high grades.”
Cut to Hakizimana interview. He says, “Its result is that during the academic year of 2019, all children with albinism from six districts, we shared their list with REB, and they gave them the national examination in large characters and they all passed the exam and they were admitted to higher levels.”
A boy wearing a green long-sleeve shirt with an orange collar sits in front of a gray mud wall. He says, “As a child with albinism, you are a human being like others, you have equal rights as others, you have the right to play, you have the right to access health care, you have the right to be loved, and you have the right to study. Be aware of yourself. Parents who gave birth to us don’t sorrow over wounds caused by people who don’t know human rights, and they have to be aware of it. Be aware of yourself.”
The camera shows aerial views of Rwanda. Voiceover says: “International development activists say: ‘If you want to go fast, go alone, but if you want to go far, go together.’ ” The camera continues showing aerial views of Rwanda. Cut to an OIPPA poster. Narrator says: “OIPPA could not go alone because it had a long way to go and had a target to transform the lives of people with albinism. That’s why it works hand in hand with its partners such as DRF, UNDP, NUDOR, Humanity Inclusion, KIPHARMA, and NCPD.” Logos of these organizations appear on a green screen. Cut to posters from these groups. “They agreed to partner with OIPPA due to its remarkable role in fighting for the rights of people with albinism.” Cut to shot of person with albinism typing on a computer.
Cut to interview with Hakizimana. He says, “What we first did is to advocate for them in the government showing it our challenges in the education sector, showing it our challenges in the health sector, showing it our challenges we faced during the recruitment process.”
Cut to a man wearing a striped shirt against a background of flowering bushes. He says, “NUDOR partners with OIPPA in fighting for the rights of people with albinism, so that those rights can be respected by everyone in terms of service access and laws that don’t discriminate against people with albinism like other people with disabilities.” Shots of people with albinism in their villages.
Cut to interview with Rodrigues. He says, “The work we’ve been doing with people with albinism, we’re seeing good progress in a number of areas. One is just the great awareness of the rights of people with albinism and not just at the community level – within the households, within the families because that’s where it starts. Many mothers and fathers are often ashamed of having children with albinism and so just promoting that awareness. We are seeing people’s minds and attitudes begin to change within the families, within the communities, and so on.” His interview is interspersed with images of adults and kids with albinism interacting. Rodriques continues: “The second area, I think we’re seeing important change is better access to health care for people albinism. We have worked with, helped to provide health insurance to over 100 persons with albinism and their families. So, these persons are now better able to access health care and medicine and the drugs that they need to take care of themselves and their families. We had a partnership with a Rwanda military hospital doing health screening for hundreds of persons with albinism and providing them after the screening with follow-up treatment, follow-up care. Many of the children now have eyeglasses that they didn’t have before, many of the adults have sunscreen to take care of their skin.”
Cut to the woman in a yellow blouse and a blue cap peeling potatoes. Voiceover says: “Even if OIPPA achieved more, people with albinism still face the challenges of discrimination during the recruitment process. This really slows down their development.” Woman peeling the potatoes says, “The simple job here is to be a mason but they can’t easily give you that job.”
Cut to an interview with a young man wearing a light blue sweatshirt, large glasses, and a light blue hat against a backdrop of bushes. He says, “A person with albinism faces many challenges on the job market. First you can apply for a job somewhere and you pass the written test. Then they call you to start a job. After realizing that you have albinism they immediately come up with unexpected excuses and promise to call you.”
*Intense piano music* as someone puts a hat on the man who just spoke. He is smiling. Cut to man driving a motorcycle through a village. Cut to meeting between Hakizimana and Rodrigues.
Voiceover says: “The United Nations Development Program has a positive impact to the rights and well-being of people with albinism in Rwanda.” Cut to shots of people with albinism in Rwanda. Voiceover continues: “Persons with disabilities, especially the ones with albinism, are welcomed with open arms.”
Hakizimana tells Rodrigues: “You know, people with albinism I would I say in Rwanda but even in other countries are neglected. Even in our country people in the government with disabilities are not talking with people with albinism and we have been advocating for this. When you’re working with people with albinism, why we are interested in working with people with albinism, UN institution, other high institutions don’t want even to meet with us. But every time I come, you open the door. I enter. Is this something that you are forced to do or are you happy to work with us?”
Rodriques replies: “No I am extremely happy to work with you. You know, in this life you have to realize that it’s about people, and it’s not about the job. It’s not about the house. It’s not about the car. It’s not about all these things. It’s about people. I want to have a good life where I’m respected and I have my dignity and I can take care of myself and my family, and you want the same. We are people. We are equal people. We are born equal in rights, equal in dignity. And so when I see people, I don’t see their disability, I see them as people. The disability is secondary. It is like my skin color. That’s not what defines me. It’s not your albinism that defines you. You’re a person, and so for me it’s something I believe in very deeply, that we need to just start by seeing each other as brothers and sisters, as one mankind, as one humankind.”
Two young people with albinism are singing. They sing: “Albinism is not an illness or a disease, but the disability comes unexpectedly. Parent, love your child and, be proud of him/her and take care of him/her because he/she is a person like others.” The singers are now standing outside and smiling at each other. *Music intensifies with a guitar riff*
Man with albinism is shown doing masonry work. Voiceover says: “OIPPA’s leadership says that the government should keep sensitizing private sectors to consider persons with albinism during their recruitment process when they express their abilities. Furthermore, they should not be excluded from local government institutions.”
A person with albinism types on a computer. Cut to interview with Hakizimana. He says, “We recommend private and public sectors recruit a potential person with albinism.” Woman walks out of a house and opens a tube of sun screen to give to a man with albinism sitting outside. *Music wraps up with soft piano*
The boy with the light blue sweatshirt, large glasses, and light blue hat is now standing in front bushes. Cut to other shots of people with albinism. Voiceover says: “Till now persons with albinism didn’t have a specific disability category. This prevents them from getting special support like constant skin cancer screening, getting sun capes and sunglasses and they should be included in the national budget as other categories of disabled persons.
Cut to interview with Mukarusine Claudine, vice president of OIPPA Rwanda. She says: “Today, we are not considered as a category of people with disabilities. When budgeting, they classify us in the 5th category, known as ‘other.’ ”
A young person with albinism looks in a mirror and then is standing outside and giving a thumb’s up. He says, “OIPPA’s advocacy helped me pass the national examination. I thought I would stay in primary school so it helped me pass and I joined the senior class. It also had helped me to be given the front seat in the class.”
A woman wearing a long-sleeved USAID sweatshirt and a purple head scarf says, “After meeting OIPPA, we attended workshops and felt proud of our children. Others realize that they are human being just like others.”
Cut to interview with Rodriques. He says, “We see many persons with albinism having skin cancer, eye problems, and so forth, so there’s a whole range of challenges that they face.” Cut to footage from 2018. Voiceover says: “During the meeting known as Umushyikirano 2018, President Paul Kagame agreed that people with albinism will get sun lotion using health insurance. Unfortunately, this decision is not being implemented.” Cut to footage of a man with albinism in a bow tie, dark suit, and baseball hat talking at this meeting. He listens as someone off-camera says, “On that point, I agree with you, and it must be done as soon as possible.” People applaud.
Aerial views of houses in the Rwandan landscape.
Cut to Hakizimana talking with Rodriques. Voiceover says: “Hakizimana Nicodeme requests that concerned institutions speed up what the president granted them so that they can have a better life and skin cancer screening should be consistent.
Cut to Hakizimana interview. He says: “I think that the way government screens other types of cancer, such as ovarian cancer for women and girls, it should take action on the issue of people with albinism so that they can be skin screened consistently to take care of their health.” Images of large moles and other types of skin growths are woven throughout his interview clip.
A young man with albinism feeds a cow. Cut to him sitting inside. He says, “Another recommendation is to train teachers so that they can get skills related to the issue of persons with disabilities.”
Close-up of another young man with albinism against a mud wall outside. He says, “My message to the teachers is to promote equity in the classroom. And note that children with albinism and without albinism have the same ideas.” He starts to sing: “I don’t have words that can express my thoughts, but you’re my day dreams.”
Cut to woman with albinism washing clothes outside. Cut to a woman being interviewed outside her home. She is wearing a blue head scarf and dark sweater. She says, “Oh my God, I start comforting parents whose children have albinism. That they must be proud of them because they are like others. They will fetch water for them, they will collect firewood for them, they will sweep their home. They can do all activities just like the rest of people.”
A woman wearing a pink T shirt and purple head scarf sweeps around her home. Cut to interview with Rodriques. *Music intensifies with guitar riff and then trails into piano fade* He says, “I think that the most fundamental area that all of those stakeholders, all of us need to address is we need to come to an understanding that people albinism are human beings like the rest of us. That’s a starting point. They have talents. They have capabilities. They’re able to study. They’re able to work just like the rest of us, and they have dreams and they had hopes and aspirations just like the rest of us.”
The camera shows a woman making blue soap in a bucket. Voiceover says: “People with albinism have the shared vision of striving for their bright future through the empowerment opportunities provided by OIPPA in partnership with the government of Rwanda and its partners.”
Cut to interview with a man with albinism wearing a gray suit, light blue shirt, and dark glasses. He is sitting outside, with greenery behind him. He says, “I need to keep investing in my talents so that I can increase my income from 20,000 to two million within three years.”
A young man with albinism stands against a mud wall. He says, “I need to be a doctor so that I can treat patients. For example, curing skin cancer or owning a pharmacy that sells sun lotion. These are my dreams.” Cut to images of OIPPA posters.
Children are shown dancing in a circle. Hakizimana says, “We also recommend parents and the Rwandan community do not consider albinism as a curse or taboo or think that a person with albinism cannot contribute to his/her country. Please treat us as human beings. What differentiates us from you is our skin color, but we are all Rwandans and human beings.” Cut to more images of people with albinism and then pans of Rwandan landscape. *Piano music intensifies* CREDITS
Thacien Biziyaremye is a journalist, director, editor, and camera operator and the co-founder of SACAMS (Special Advocacy, Communication and Media Services) Ltd. He is based in Kigali, Rwanda.
Biziyaremye became engaged in journalism, storytelling, and video production after realizing that marginalized people, including persons with disabilities, were not accessing human rights like others in his village. He discovered a love for media so that he could advocate through his communications and storytelling skills. He joined the University of Rwanda and graduated in 2015 in Journalism and Communications. When not busy with work, Biziyaremye can be found taking photographs and shooting video.
About this video: Of the nearly 400 DeafBlind people living in Malawi, 250 are school-aged children. DJP Fellow Duster Lucius interviews Chrissy Mutumba, the first DeafBlind student accepted at a prestigious high school in Blantyre.
About this video: Limited access to food and medicine poses significant risks to Ugandans with with disabilities who are HIV positive. Advocates are asking for more government support for their life-saving programs.
About this video: The COVID-19 pandemic has exacerbated limited work opportunities for Indonesian massage therapists who are blind and low-vision. *Audio descriptions for blind and low-vision audiences.
About this video: Discriminatory legislation and stigma have made sexual and reproductive health (SRH) resources inaccessible to queer Nigerians with disabilities. Disability advocates explain the need for an intersectional approach to SRH resources in Nigeria.
About this video: 2021 DJP Fellow Esther Suubi provides an intimate look at how Ugandan women with psychosocial disabilities unite against discrimination. *Audio descriptions for blind and low-vision audiences.
About this video: An inclusive technology training center in Rwanda is providing an increasingly critical resource for persons with disabilities: computer skills. Some learners have gone on to earn raises and promotions after developing new skills.