Film
About this video After the Rain
NEW CLIMATE SERIES: Amid worsening climate disasters, Florentine Mukantagwera – still in her demolished home after Rwanda’s 2023 floods – finds strength in her community as disabled Rwandans face growing risks.
Filmmaker: Francine Uwayisaba
Francine Uwayisaba is a field officer at Rwanda Union of Little People (RULP) and is in charge of the organization’s communications. Read more about Francine Uwayisaba
Transcript for After the Rain
Audio description: Text appears: In Rwanda, changes in weather patterns have caused rains to be stronger and heavier.
Audio description: A flooded road with significant damage. People walk along the damaged road. Text appears: Torrential downpours have washed away roads and destroyed homes.
Audio description: Florentine Mukantagwera, from the Gakenke District, Northern Province, sits and gestures while speaking.
Florentine: My wish is to have a well-roofed house because it rains in and out.
Audio description: A flooded road next to houses. Text appears: In 2023, floods in Rwanda devastated the country’s Western and Northern provinces, leaving about 130 people dead.
Florentine: When the flood happened…
Audio description: A makeshift metal bridge over a fast-flowing, muddy stream. People work to clear mud and debris from a flooded area.
Florentine: I was here alone.
Audio description: A large section of land has been eroded, revealing a steep slope of exposed earth and rocks.
Florentine: I heard people in the mountains shouting and crying that they are dying.
Audio description: The interior of a small, sparsely furnished room. A mosquito net hangs over a bed.
Florentine: I wondered, What if my house falls on me? The whole yard was water, and it started to fall in the house through the roof.
Audio description: A view of the interior of a damaged roof. Water damage is visible. Catheline Nyiramanzi, Florentine’s neighbor, sits on a wooden bench and speaks to the camera.
Catheline: As her neighbor, I wish her a safe house because she lives in a crushed house due to its old and heavy rain.
Audio description: Florentine sits outside her house, appearing to throw a rain covering over her belongings.
Catheline: As a person with a disability, this flood and landslides have doubly affected her life.
Audio description: Interior of a simple room with a bed and a mosquito net. Text appears: During the Rwandan genocide in 1994, Florentine and her family fled to Congo. Ten years later, they returned to the demolished house she lives in.
Audio description: A young man gathers leaves in a metal bowl. Text appears: Ten years ago, she lost control of her motor functions after contracting tuberculosis. She relies on her neighbors and son for survival.
Audio description: Eric Niyogisubizo, Florentine’s son, sits and speaks to the camera
Eric: I really want to continue my studies. I tried all my best, and I ended in primary six to care about my mother.
Audio description: Eric brings a bowl of food to Florentine.
Florentine: My neighbors cultivate for me without my request, and they give me beans from their houses.
Audio description: Two women bring a blanket to Florentine.
Florentine: I sit here and find them providing me food and porridge.
Audio description: Florentine sits by a small fire, preparing food.
Florentine: There is a Bible verse saying that, “For I was hungry, and you gave me food. I was thirsty and you gave me a drink, naked, and you clothed me. Ill, and you cared for me.” You cannot imagine how much that polish relieved me.
Audio description: The Disability Justice Project logo, featuring a bright yellow letter D with a triangular play button in the center, appears on a black background.
About this video Field Lessons
NEW CLIMATE SERIES: Ugandan farmer Steven Bukaya is finding practical ways to adapt to rising heat and limited support, determined to grow his business on his own terms as a person with a disability.
Filmmaker: Christine Oliver Dhikusooka
Christine Oliver Dhikusooka is executive director of One Voice Heard 4 Disability Uganda (OVH4DU), which advocates for the rights of women with disabilities in Uganda. Read more about Christine Oliver Dhikusooka
Transcript for Field Lessons
Audio description: A brown goat eats green plants, its head down, body angled towards the ground.
Steven Bukaya, a Ugandan man in a yellow shirt, sits on the ground, chopping a banana trunk with a large knife.
Bukaya: I’m Bukaya, Steven. I’m age 57 years.
Audio description: Steven looks off-camera and smiles. Cows are visible in the background.
Bukaya: I’m a farmer.
Audio description: He sits on the ground next to piles of sweet potatoes and a bag of plants.
Bukaya: Most especially in the cattle rearing and piggery.
Audio description: Steven sits on the ground petting a brown-and-white cow eating a banana trunk. In the next shot, Bukaya is revealed to have a limb difference affecting his legs. He crawls on the ground, protecting his hands with salmon-colored sandals.
Bukaya: When you’re a person with disability and rear animals, your home becomes a school to other people. They always refer to you that if a disabled person can raise animals, how about we?
Audio description: Text overlay: Work has become harder for Bukaya as worsening droughts during Uganda’s dry seasons have driven up the cost of essentials like animal feed, water, and transportation.
Bukaya: Climate change is affecting me so much because when the climate is very hot like it is now, the feeds are very expensive, most especially when it comes to to a maize brand. There is a type of grass which they eat, and it accelerates the milk.
Audio description: A white sack is tied with string with some banana trunk sticking out. Bukaya milks a cow, filling a pink bucket with milk.
Bukaya: But during the dry season, that type of grass is nowhere to be seen.
Audio description: Cows stand in a wooden enclosure. Text on screen: To feed the animals, Bukaya and his family often forage for plants or stretch their feed supply by diluting it with water.
Stephen works on his hands and knees, picking up green plants from a pile of wooden planks.
Bukaya: We don’t get enough food like grass and other things. We supplement the feeds with it. With water.
Audio description: A woman pulls animal feed and then water into a trough.
Bukaya: During the dry season, the bill for the tap to water it goes up. Yes.
Audio description: A white pig eats from a trough.
Bukaya: So these days they don’t eat to the maximum. They eat only to survive.
Audio description: A woman chops a banana trunk with a knife next to a small child. Text overlay: Facing lower returns on milk and increasing prices, maintaining his cattle and family has become a challenge for Bukaya.
Bukaya: We have been yearning for the government to help us. But to the way they bring in their programs, they are not disability-friendly. When we are in this type of business, we face a lot of challenges.
Audio description: Text overlay: Bukaya hopes to modernize his farm by acquiring hybrid animals, which are more resilient to climate change, and by having more accessible transport to the market.
Stephen sits on the ground, holding a plant in his hands.
Bukaya: We are using this bicycle, the local bicycles.
Audio description: A man pushes a bicycle laden with banana trunks.
Bukaya: but my vision is to make this thing more, more commercial than it is. I need a motorized transport, like a piki.
Audio description: Bukaya gestures as a small fleet of motorized scooters gathers behind him.
Bukaya: That’s what I’m heading for. But it’s a bit expensive.
Audio description: Bukaya slips his sandals over his hands to begin crawling toward the camera. Text overlay: Without disability-inclusive government programs and sufficient funding, Bukaya and other Ugandans with disabilities face the greatest risks from the impacts of climate change.
Text overlay: While Uganda has made strides in enacting laws like the Persons for Disability Act in 2020, more must be done to ensure their inclusion in future climate change adaptation and action plans.
The Disability Justice Project logo, featuring a bright yellow letter D with a triangular play button in the center, appears on a black background.
About this video Climate Isn’t Equal
NEW CLIMATE SERIES: Pranav Sethi says climate change is making daily survival even harder for people with disabilities. From toxic air to intensifying disasters, what’s now treated as “normal” was never meant to be.
Filmmaker: Aalap Deboor
Aalap Deboor is a producer-entrepreneur with 15 years in the entertainment industry. After a career in entertainment journalism followed by TV programming & production with MTV & Vh1, he started Much Much Media, a Mumbai-based content studio. Read more about Aalap Deboor
Transcript for Climate Isn’t Equal
Audio description: An Indian man wearing a beanie and navy sweatshirt on a red bench in a park speaking to the camera.
Pranav: Most of the neurodiverse people are surviving and not living, and I genuinely feel the same. See for neurodiverse people, every day is a survival.
Audio description: An aerial view of Delhi, a densely populated city covered in smog.
Audio description: Text on screen: Pranav Sethi is a 34-year-old autistic disaster risk reduction professional.
[soft acoustic music throughout]
Text continues: He is vocal about climate change and its effects on disabled and neurodivergent people.
Audio description: Pranav sits indoors looking at a laptop,
Pranav: I mean I personally have seen the impact of climate change.
Audio description: Pranav walks down a street with parked cars and buildings on either side.
Pranav: Because of my special interest and because it’s slow.
Audio description: Three smokestacks emit smoke into the sky,
Pranav: Like, you know, it’s not a sudden change. It’s a process. Like you know, it’s a very slow process.
Audio description: Pranva walks through a smog-filled park with trees and benches.
Pranav: The moment you land in Delhi you know you can have as many uh air purifiers as you like.
Audio description: A plane lands on a runway in heavy smog. Passengers disembark and walk through the haze.
Pranav: They are not going to do anything because you cannot seal your home. Winters are here.
Audio description: A car drives through dense fog and smog. Streetlights shine through dense pollution.
Pranav: Smog is at its peak. As you can see, like, you know, most of us are coughing. It’s a lot of smog.
Audio description: Text on screen: Climate change makes smog worse by increasing heat and sunlight.
This speeds up the chemical reaction between pollution from power plants, cars and factories.
Text continues: More ozone forms, leading to dirtier air and more health problems.
Pranav: You find it difficult to breathe. You find it difficult to like, you know, drive.
Audio description: Prav drives a car.
Pranav: During winters it is like that – that all the air will kind of accumulate over the northern plains.
Audio description: Cars drive on a highway through dense smog. A hazy aerial view of Delhi, buildings and traffic,
barely visible.
Pranav: And we are in the middle of it so you know we end up suffering.
Pranav’s wife Shivani: And we are just no ready to face the changes that are happening these days.
Audio description: Pranav is joined by his wife, Shivani. They sit together on a red bench in a park. Shivani wears light pink jeans and a beige hoodie with yellow
trim.
Text on screen: Shivani Chandel, government schoolteacher, Pranav’s wife.
Shivani: I mean the pollution for one, the like natural disasters being more frequent.
Pranav: Like, I’ve seen people in the middle of such crisis.
Audio description: The Red Fort in Delhi crowded with tourists and layered in smog.
Pranav: After coming out of it they still are not able to acknowledge the fact that you know it’s because of climate change.
Audio description: Pranav stands in a park covered with fallen leaves. Wearing sandals, he shuffles his feet through the leaves.
Pranav: They will think of any random, obscure, um like, you know, reason but not climate change.
Audio description: A drive-by view of people walking on a busy street in Delhi, wrapped in shawls. A wide view of a smoggy landscape with a river and birds flying overhead.
Pranav: That is how bad the thing is.
Audio description: An aerial view of Indian women wearing colorful saris walking in a line through a dry landscape, carrying large pots of water atop their heads.
Text screen: While 82% of people in India acknowledge that global warming is happening, only 54% believe it is primarily caused by human activities.
Source: Yale climate opinion maps for India 2024
Text continues: the rest attribute it to mostly natural changes in the environment.
Shivani: And given like how uneducated a majority of our population is they think that, “Okay, we’re just a minuscule part of this big, big population of India.
Audio description: A woman arranges garlands in her shop. Two women carry pots of water on their heads.
Shivani: And anything we do will not make any difference.
Audio description: Time-lapse showing the Red Fort in Delhi, crowded with tourists and shrouded in haze.
Shivani: They cannot be worried because they have so much to worry about, like what they’re going to have next in their meal, if they’re going to have enough clothes to wear for the winters.
Like, I think a mindboggling uh sum of people are uneducated.
Audio description: A woman sells vegetables at a market store.
And they just don’t they don’t know about it, so they they can’t care about it.
Audio description: A crowded, polluted street in Delhi, with overhead wires.
And if they know about it, they still can’t care about it because they have like very immediate issues that they have to cater to. That’s how I feel.
Pranav: You know people are busy with their own life to an extent where they don’t even know that they don’t even know the climate is changing.
Audio description: An aerial view showing cars and people on the street, another overhead view of Delhi with a train running down the center.
Pranav: And they have started to accept this as the new normal. People are believing that this is how it is now.
Audio description: A small boat with people on a smoggy river, birds flying overhead.
Pranav: It was never the case earlier, like 20 25 years back. That was never the case, but now it is becoming a big issue, so like I mean, this should never be considered as normal. This is not normal.
Audio description: A crowded time-lapse of cars and people on the street. Text on screen: As climate change intensifies, inclusive action is more critical than ever. People with disabilities are among those most affected, often facing higher risks during climate-related disasters and limited access to resources for adaptation.
Text on screen: India’s updated climate goals under the Paris Agreement focus on making climate action fair and inclusive, cutting carbon emissions per unit of GDP [gross domestic product] by 45% by 2030 compared to 2005, with solutions that everyone, including disabled communities, can access.
Text continues: Growing forests and tree cover to absorb 2.5 to 3 billion tons of CO2 by 2030 with diverse communities taking part.
Text continues: Increasing funding for climate programs that support vulnerable groups, particularly persons with disabilities, across sectors such as agriculture, water resources, the Himalayan region, coastal
regions, health, and disaster management.
Text continues: This inclusive update to India’s nationally determined contribution [NDC] marks a significant step toward India’s long-term goal of achieving net-zero emissions by 2070.
The Disability Justice Project logo, featuring a bright yellow letter D with a triangular play button in the center, appears on a black background.
About this video Rising Tides, Raising Voices
Indigenous Pacific Islanders with disabilities fight for survival amidst rising sea levels, advocating for inclusive disaster responses and sustainable futures.
Filmmaker: Jody Santos
Jody Santos is the founding executive director and editor-in-chief at the Disability Justice Project. Read more about Jody Santos
Transcript for Rising Tides, Raising Voices
[waves crashing against the shore]
Audio Description: A swell of blue-green waves crashes against the shore. A storm shakes palm trees with dark skies.
[wind whistling through the trees]
Audio Description: Text on screen says, “Pacific Island nations contribute only 0.03 percent to global greenhouse gas emissions but are among the hardest hit by climate change.
Audio Description: Text on screen says, “These low-lying islands have no escape from rising coastal waters and extreme weather events. Freshwater exists in precarious balance with the encroaching sea.”
[tearing, rustling, and banging]
Audio Description: A young ni-Vanuatu man uses a knife to repair a thatched roof destroyed by a recent storm.
Nelly Caleb: Nowadays, we have 7 to 8 disaster strikes every month in Vanuatu in different areas.
Audio Description: Nelly Caleb, a ni-Vanuatu woman with low vision, sits outside and speaks to camera. She is wearing sunglasses and a short-sleeved dress. Caleb is the national coordinator of the Vanuatu Disability Promotion and Advocacy Association. A billboard shows a tsunami evacuation plan, and a chain-link fence holds back an eroding coastline.
Nelly Caleb: We have more and more cyclones coming, and even the weather patterns, it’s not like before. In these days, there’s very, very heavy rains and we could see the sea level rise. Now it’s chasing the people who live near the coastlines, they are moving further up.
Audio Description: Two boys play in floodwater in Vanuatu. Herbert Bell, a blind Samoan man with a goatee, speaks to camera. He is the disaster risk reduction officer for the National Advocacy Organization for Persons with Disabilities of Samoa.
Herbert Bell: Some villages are sinking slowly. We’ve seen a change in climate.
Audio Description: A young boy from the Solomon Islands with a physical disability pumps water from a spigot.
[running water]
Audio Description: Melvina Voua, a young woman from the Solomon Islands, speaks to camera. Her dark hair is pulled back in a ponytail, and she is wearing a pink shirt and shell around her neck. Voua is a member of and the former climate change officer for People with Disability Solomon Islands.
Melvina Voua: For some islands, the wells are like salty because they are no longer fresh because the sea level rise.
Audio Description: The young boy from the well carries a pan to fetch clean water. He has a limb difference and is limping. He dips his pan into a deep well underground.
Melvina Voua: If they want to get clean water, they have to go far, for the streams. And for persons with disabilities, it’s so difficult going a long distance, and it’s not accessible. A few people, when they get sick, they boil the water. But because it’s a lot of hard work, they cannot boil water every day.
[ominous, echoey synth music]
Audio Description: Children play in the ocean in the distance. Text on screen says, “Much of the Pacific’s small island states are the traditional lands of Indigenous peoples.”
Audio Description: Text on screen says, “As part of a legacy of systemic oppression, these communities experience inordinately high rates of poverty and disability, increasing their susceptibility to the effects of climate change.”
Audio Description: Mare Rodin, a Fijian woman in a wheelchair, heads to her office. She has an Afro and is wearing a pink sweater and red pants. Later, a man pushes her on a path to her home in the informal settlement where she lives.
Mere Roden: For persons with disabilities, there’s a warning for a tsunami, but where do we go to? Who would take us?
Audio Description: Faaolo Utumapu-Utailesolo, a blind Samoan woman, uses a cane to guide her outside. She is wearing a purple and pink dress and a pink cape. She has a yellow flower in her hair. Utumapu-Utailesolo is the program officer for Pacific Island Countries for the Disability Rights Fund.
Faaolo Utumapu-Utailesolo: Me being blind, I don’t know if a cyclone is happening. If I run outside, is there going to be a flying object flying directly at me and I can’t see it?
Audio Description: Mare Rodin hangs laundry on the porch outside her home in the Veidogo informal settlement in Suva, Fiji. A young girl helps her.
Mere Roden: A tsunami warning. I remember the second time it happened, when I moved into this settlement.
Audio Description: Mare Rodin sits in her office and speaks to camera. She is the office manager for Spinal Injury Association of Fiji. This is followed by a collage animation sequence of Rodin in her home and then going outside to be warned by a neighbor of the impending tsunami. Young Fijian boys wearing rugby clothes run to save her. The animation used throughout the video incorporates newspaper strips into a 1970s-style visual narrative.
Mere Roden: It was dark. It was in the evening. And I remember it was just myself and my husband had just gone out to a friend’s place. And then we were asked to leave right there and then, you know? You need to get to higher ground. There were these boys who were part of the rugby club from the settlement. Then, somehow 2, 3 boys, they came running and they wanted to help me out. They knew that my husband had gone out, they said, “We’ll take you. Don’t worry.” They call me Auntie Mammy in the settlement. They said, “Auntie Mammy, we’ll take you. Don’t worry, just come. We’ll take your chair out, and this one is going to carry you.” And you know, they were just sorting things out. And then I said, ‘See, if it’s hard to take me, you guys go. You run for your lives. You guys are much younger, you still have a long way to get to go. Don’t worry about me. You leave me behind.’
Audio Description: Collage animated sequence showing the Pacific Islands hit by natural disasters. Houses are underwater and buried by landslides. The title of the film comes on screen: “Rising Tides, Raising Voices.”
[people talking]
Audio Description: The office of the Fiji Disabled Peoples Federation. Jay Nasilasila stands outside, leaning on a metal crutch and talking with a man in a wheelchair.
Jay Nasilasila: When I go out to the community, I tend to hear the reality of what persons with disabilities are going through.
Audio Description: Nasilasila is in the office, making phone calls, and wearing a blue T-shirt that says on the back, “Disability Inclusion in Climate and DRR Policies and Actions.”
Jay Nasilasila: They are facing changing weather patterns.
Audio Description: Nasilasila, the coordinator for the disaster risk reduction unit at Fiji Disabled Peoples Federation, sits next to a conference table and speaks to camera.
Jay Nasilasila: The planting of vegetables, the seasonings of fruits from trees tend to change.
Audio Description: Mare Rodin maneuvers her wheelchair to drink water from her sink.
Jay Nasilasila: And the access to water.
[clap of thunder followed by rain]
Audio Description: Dark skies loom over the sea in Fiji with mountains in the background.
[waves lapping against the shore]
Audio Description: Water laps against the shore and a coconut is washed up on the beach.
Jay Nasilasila (cont…): And those that live in the poorer remote areas, or on the coastal, we’ve noticed coastal erosion happening,
Audio Description: Scenes from a flooded informal settlement in Fiji.
Jay Nasilasila: An increase in sea level that has also affected their livelihoods.
Audio Description: Kaltaktak Kalokis, an older ni-Vanuatu man with graying hair, works in his garden. He is the elder chairman of the Erakor Village.
Jay Nasilasila: The backyard gardening that they tend to plant are being disrupted by the waves coming in, and it’s not growing as it used to be before.
Audio Description: Kalokis grabs cassava from his shed and walks toward the camera to speak.
Kaltatak Kalokis: Like this one we call cassava. And back in 1960 to ‘70s, ’80s, that’s our crop. And this one took about two and a half years to reach that size. But back in the ‘60s in 8 to 8 months to 16 months for a crop to reach that size. So, you see the big difference from 8 to 16 months and two and a half years.
[trickling water sounds]
Audio Description: Kalokis uses a watering can to water his garden. Melvina Voua from People with Disability Solomon Islands speaks to camera.
Melvina Voua: For the rising temperature, I think it’s becoming more challenging nowadays. It can get your skin burning and especially for the disabilities who we cannot move fast.
Audio Description: Kalokis pushes a woman in a wheelchair down the path to his home. He talks with her and the other women in the group.
Melvina Voua: Because most people they depend on gardening for their food and survival, so they cannot walk for a long time in the garden because of the temperature
[melancholic synth music with strings]
Audio Description: A van pulls up outside the Vanuatu Society of People with Disability.
Audio Description: Text on screen says, “Governments are obligated under international law to uphold the rights of persons with disabilities in their climate responses, as affirmed by the Paris Agreement’s preamble. Yet according to a 2022 study, out of the then 192 parties to the agreement, only 35 mention people with disabilities in their climate pledges.” At the bottom of the screen is the source: a 2022 study by the Disability Inclusive Climate Action Research Program at McGill University and the International Disability Alliance (IDA).
Audio Description: Text on screen says, “Pacific activists are demanding a seat at the table in shaping climate change and disaster policies, urging governments to ensure accessible evacuation centers and inclusive early warning systems.”
Audio Description: Faaolo Utumapu-Utailesolo from the Disability Rights Fund speaks to camera.
Faaolo Utumapu-Utailesolo: One Deaf person was sharing about how he saw a lot of his family members started to run inland. He has no idea what’s happening because he couldn’t hear the the early warning signs.
Audio Description: Nelly Caleb from the Vanuatu Disability Promotion and Advocacy Association speaks to camera.
Nelly Caleb: Vanuatu doesn’t have any national sign language. At the moment, they are developing one, but people who are Deaf cannot, you know, access, education system because we do not have any national sign language.
Audio Description: Collage animated sequence depicting Caleb’s story about a Deaf woman at home making dinner as an NGO staff member knocks on her door in the pouring rain to warn her about the impending landslide. Ni-Vanuatu women run away as the land crashes down behind them. The landslide buries the Deaf woman’s home and the surrounding village. Smoke billows from the scene as the rain continues to fall.
Nelly Caleb: When we had these landslides in 2015, in the southern part, where a woman, she’s Deaf. She had six children, and she’s pregnant at the same time. One of the NGO staff they went up there to warn the community: “You need to move out because a landslide might come.” But all the women are scared, and they run away. They didn’t serve the information to the woman who is Deaf. Two days after, the landslide fell and she’s gone with the babies, with the children.
[people talking]
Audio Description: The sun glints off wheelchairs lined up outside the Vanuatu Society of People with Disability. Utumapu-Utailesolo speaks to camera.
Faaolo Utumapu-Utailesolo: People with disabilities do not have the support that they need during a disaster. Especially if the evacuation centers are not accessible.
Audio Description: At an evacuation center in Vanuatu, there is no wheelchair ramp – just cinder block stairs to the entrance.
Audio Description: Evelyn Ukai James, a ni-Vanuatu woman using a wheelchair, speaks to camera. Her graying hair is pulled back, and she is wearing a purple dress and a white scarf. She is the livelihood trainer for women and girls with disabilities at the Vanuatu Society of People with Disability.
Evelyn Ukai James: Most evacuation centers, if I come to this building and the door is little and my wheelchair is too big, that’s it. I just have to stay outside, or I have to go down and crawl, and this is not what we want it to look. Very bad. But people are watching us crawling in.
Audio Description: Nelly Caleb and Kaltaktak Kalokis from Vanuatu push Freda Willie in her wheelchair. Willie is wearing a pink sweatshirt, and her short, dark hair is pulled back in an orange bandana. Willie is the disability inclusive officer at the Vanuatu Disability Promotion and Advocacy Association under the Australian Humanitarian Program. She speaks to camera.
Freda Willie: Like Cyclone Pam in 2015, I had to move from my home to an evacuation center. When I called, they said, “Oh, you can’t come here because you’re a wheelchair user. Our toilet and bathroom is upstairs.”
[chirping birds]
Audio Description: Unaisi Bakewa walks across the bridge in the informal settlement of Tavua, Fiji. She is her village’s disability focal point for the Fiji Disabled Peoples Federation. She sits on a branch with a river behind her, speaking to camera. She has short dark hair and is wearing a purple shirt with the Fiji Disabled Peoples Federation’s logo.
Unaisi Bakewa: There has been the recent floodings in the past few years due to the climate change. And you can see that the river is getting wider now. For people with disabilities, they don’t want to go to the evacuation center there because they tend to see that it’s not disability friendly.
Audio Description: An animated sequence of a man and woman in Tavua stacking mattresses inside their home as the water rises outside. The man uses a wheelchair, and he pulls it on top of the mattresses after climbing up. The woman sits on the mattresses with her arms wrapped around her knees. Eventually, the water recedes, and the man and woman climb down. Outside, Tavua is flooded.
[somber piano music]
Unaisi Bakewa: So what some of them tend to see they just double the beds, they double the beds and sit on top. If they don’t want to go to their friend’s house or relative’s house, they’ll just stay there. They’ll just sit on top of the bed until the water goes out so, and then they can come down again. It literally puts them at risk, yeah? Because some of them you know, because of the diseases that commence now, in the leptospirosis, because whenever there’s a flood, their house is underwater.
Audio Description: Text on screen says, “In the Pacific, disabled activists are at the forefront of climate justice action, developing inclusive solutions to address the climate crisis.”
[whirring, clicking printer sounds]
Audio Description: A sign on a wall says, “Samoa Blind Persons Association.” A woman from behind looks at the printer as it prints Braille documents. She takes the documents and inspects them. Herbert Bell from the National Advocacy Organization for Persons with disabilities of Samoa speaks to camera.
Herbert Bell: You remember that saying, “Knowledge is power”? For us people who are blind, if we do not get the information, that means we don’t understand the affairs of the world. And we tend to get left behind from our society.
Audio Description: A woman binds the Braille document. She looks at files on her computer and chats with a colleague at her desk. She presses the start button on the printer as her colleague reads aloud from a Braille document.
Herbert Bell: Recently, we’ve launched the Disaster Risk Management booklet from the Disaster Management Office, which is now translated into Braille so that the blind community will be aware of how to respond when an earthquake occurs or maybe a cyclone so that we do not rely on our families to tell us what to do. We are able for ourselves to to read and to learn on how to cope with, with disasters and mitigate the risk of climate change.
Audio Description: Jay Nasilasila from the Fiji Disabled Peoples Federation speaks to camera.
Jay Nasilasila: When disasters is approaching the country, we activate our emergency operations center,
Audio Description: A whiteboard inside the office of the Fiji Disabled Peoples Federation has the words “disability inclusive awareness training” written on it. Nasilasila is typing on a computer.
Jay Nasilasila: Disability sector, emergency operations center in this very room where we start to coordinate with our 16 branches, and start to communicate on the severity of the different situation reports.
Audio Description: Nelly Caleb from the Vanuatu Disability Promotion and Advocacy Association speaks to camera.
Nelly Caleb: We are part of the working committee for the sign language and, um, different organizations that are a part of the working group. We were tasked to look at the different actions, how you sign maybe a cyclone coming.
Audio Description: Vanuatu scenery passes from a car. Caleb rides in the backseat, looking out the window.
Nelly Caleb: So now, the Education Department is putting the sign language together. Not only coming out from the Education Department, but it’s coming out from all our members in Vanuatu.
Audio Description: Faaolo Utumapu-Utailesolo from the Disability Rights Fund sits in the back of a moving van at dusk. She looks contemplative. Later, she speaks to camera.
[hopeful violin and piano]
Faaolo Utumapu-Utailesolo: People with disabilities should be involved in the design, implementation, and also monitoring of disaster risk management.
Audio Description: A truck speeds by with a group of young ni-Vanuatu men in the back. A van is parked outside the Vanuatu Society of People with Disability. Staff inside work on computers. A young woman and a boy help Caleb take Freda Willie’s wheelchair out of a parked van and unfold it.
Nelly Caleb: But we have to be resilient. We had our training just last month with all organizations of persons with disabilities who are in six provinces across Vanuatu, and we told them we need to have a plan, an escape plan. We need to make sure that people with disabilities are evacuated before a cyclone or a disaster strikes.
Audio Description: Nasilasila speaks to camera.
Jay Nasilasila: When we talk about resilient people, we are already resilient.
Audio Description: A boy with a physical disability in the Solomon Islands carries water in a plastic bottle. Willie and Evelyn Ukai James sit at a table and chat at the Vanuatu Society of People with Disability.
Jay Nasilasila: We’ve been living through this climate in the past for almost how many decades ago and we’re still here. So that is a true definition of resilience for persons with disabilities…
Audio Description: Utumapu-Utailesolo is helped out of the van by a young Fijian man and walks into a building.
Jay Nasilasila: specifically that they’re able to live through this.
Audio Description: Collage animation to illustrate the story told by Mare Rodin of the Spinal Injury Association of Fiji about her neighbors building a footpath for her. The animation zooms in on colorful houses, and then an older Fijian man stands up at a meeting, gesturing emphatically. The scene cuts to Rodin in her wheelchair outside in the rain as her husband reaches for her. Later, men carry bags of cement while other people help spread it. A woman offers food on a tray.
Mere Roden: I’m fortunate because where I live for the past 25 years, there was no footpath. Six years ago, there was a meeting that was held, and there was this old man who was living temporarily with his family there. He suggested that they work on a footpath. And the reason being was this, he said, “I noticed a woman living down inside of the settlement, being carried, rain or shine. She’s carried on the husband’s back, or someone else’s back, and her chair would be taken up by somebody to wait from the roadside. And, I just think that we should work on a footpath that, you know, she may be taken in a more digniful way up to the roadside to board her vehicle or the transport at the roadside. There were those who contributed a bag of cement, and there were those who would cook and provide lunch for the boys who were working on them.
Audio Description: A girl assists Rodin by pushing her wheelchair. Rodin kisses a little boy’s forehead as he greets her while other children watch. Later, a man pushes Rodin up a wooden ramp into her home.
Mere Roden: But when I get off the taxi, there are children as little as, who haven’t even gone to kindi, who would run up and say, want to pick my bag. And I’m always thinking, Lord, that this God is watching me and protecting me, and he’s got his hands everywhere. And even if I’m coming late in the evening, I know that there’s always someone who’s going to be there.
Fade to black.
About this video Rise Up!
Women with disabilities in the Solomon Islands face barriers to employment. When Diana Ma’ahoro experienced these firsthand, she enrolled in a national leadership program. Now she's a renowned disability rights activist in the Pacific.
Filmmaker: Melvina Voua
Melvina Voua is a member of People with Disability Solomon Islands (PWDSI), the umbrella body of organizations for people with disabilities in the Solomon Islands. Read more about Melvina Voua
Transcript for Rise Up!
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About this video Farming Through Extremes
Farmers with disabilities in rural Nepal are facing unprecedented challenges as climate change intensifies. Unpredictable weather patterns, including devastating floods, threaten their livelihoods and disrupt farming in remote, mountainous regions.
Filmmaker: Chhitup Lama
Chhitup Lama is the founding executive director of Himalayan Education and Development (HEAD) Nepal. Read more about Chhitup Lama
Transcript for Farming Through Extremes
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About this video Heat and Hurricanes
For Larry Landrie, a disabled senior in Georgia, rising heat and frequent storms are life-threatening. As extreme weather intensifies, inclusive disaster planning becomes essential.
Filmmaker: Larry Landrie
Larry Landrie is retired from a 40-year career with the Department of Veterans Affairs. He is admin for the Facebook group, Worldwide Wheelchair Photographers. Read more about Larry Landrie
Transcript for Heat and Hurricanes
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About this video The Hottest Decade
As the world experiences the hottest decade in recorded history, extreme temperatures are aggravating health conditions and making it dangerous for Pacific Islanders with disabilities to go outside, further affecting their ability to work.
Filmmaker: Faaolo Utumapu-Utailesolo
Faaolo Utumapu-Utailesolo is the Program Officer for the Pacific Island Countries for the Disability Rights Fund and the Disability Rights Advocacy Fund. Read more about Faaolo Utumapu-Utailesolo
Transcript for The Hottest Decade
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About this video Flood Risks Rising
In May 2023, floods ravaged Rwanda, claiming lives and leaving many, like Florentine Mukantagwera, trapped and at risk. Her story shows the urgent need for inclusive disaster planning.
Filmmaker: Francine Uwayisaba
Francine Uwayisaba is a field officer at Rwanda Union of Little People (RULP) and is in charge of the organization’s communications. Read more about Francine Uwayisaba
Transcript for Flood Risks Rising
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About this video Climate Strain
Navigating Delhi's congested streets and hazardous air, Pranav Sethi experiences sensory issues that intensify with shifting weather patterns, making everyday life physically and mentally draining.
Filmmaker: Aalap Deboor
Aalap Deboor is a producer-entrepreneur with 15 years in the entertainment industry. After a career in entertainment journalism followed by TV programming & production with MTV & Vh1, he started Much Much Media, a Mumbai-based content studio. Read more about Aalap Deboor
Transcript for Climate Strain
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About this video Redefining Justice
Roshani Adhikari recently made history as Nepal's first blind female lawyer. She is committed to making her country's legal system more accessible.
Filmmaker: Bishwamitra Bhitrakoti
Bishwamitra Bhitrakoti is a communications officer at the National Federation of the Deaf, Nepal and president of the Annapurna Deaf Association. Read more about Bishwamitra Bhitrakoti
Transcript for Redefining Justice
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About this video Breaking Free
Angela Nsimbi shares her story of living with bipolar disorder, reflecting on the challenges of her diagnosis and the transformative power of family support.
Filmmaker: Esther Suubi
Esther Suubi is an advocate for young girls and women's voices and a peer educator at Triumph Mental Health Support. Read more about Esther Suubi
Transcript for Breaking Free
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About this video Together, We Can Make a Better World
In the remote districts of Humla and Mugu, Nepal, a community's concerted efforts toward disability inclusion are transforming lives through grassroots advocacy.
Filmmaker: Chhitup Lama
Chhitup Lama is the founding executive director of Himalayan Education and Development (HEAD) Nepal. Read more about Chhitup Lama
Transcript for Together, We Can Make a Better World
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About this video Crossroads
DJP Fellow Sita Sah explores the challenges and societal barriers faced by blind women in Nepal, highlighting both their personal struggles and the collective activism aimed at systemic change.
Filmmaker: Sita Sah
Sita Sah is a project assistant at the Blind Women Association Nepal (BWAN) with over five years of professional experience across various sectors and NGOs. Read more about Sita Sah
Transcript for Crossroads
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About this video An Essential Benefit
The first disability benefit scheme in Samoan history offers monthly payments to residents with disabilities. DJP Fellow Ari Hazelman interviews Samoan advocates pushing for the strengthening of this essential program.
Filmmaker: Ari Tommy Hazelman
Ari Tommy Hazelman is a blind 34-year-old Samoan man posted as the disability inclusive officer for the Samoa Blind Persons Association (SBPA). Read more about Ari Tommy Hazelman
Transcript for An Essential Benefit
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About this video A New Challenge
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 to a prestigious high school in Blantyre.
Filmmaker: Duster Lucius
Duster Lucius is a 19-year-old disability youth activist who is DeafBlind (partial hearing, completely blind) and a national youth coordinator at the Visual Hearing Impairment Membership Association (VIHEMA). Read more about Duster Lucius
Transcript for A New Challenge
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About this video Breaking Chains
Following her husband’s death by suicide, Santoshi BK experienced depression and hallucinations. She gained support through a self-help group and has become an advocate for those with psychosocial disabilities.
Filmmaker: Sanjaya Raj Neupane
Sanjaya Raj Neupane is the advocacy coordinator at KOSHISH, an organization amplifying the voices of persons with psychosocial disabilities. Read more about Sanjaya Raj Neupane
Transcript for Breaking Chains
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About this video Driving Change
Deaf individuals in Nepal struggle to obtain driver's licenses due to discriminatory laws. Advocates like Raghav Bir Joshi are pushing for change.
Filmmaker: Bishwamitra Bhitrakoti
Bishwamitra Bhitrakoti is a communications officer at the National Federation of the Deaf, Nepal and president of the Annapurna Deaf Association. Read more about Bishwamitra Bhitrakoti
Transcript for Driving Change
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About this video ‘I Feel Like an Outsider’
For many Indonesians with psychosocial disabilities, access to mental health care remains a challenge. With the help of a friend, 44-year-old Ardiansyah eventually found refuge in a local mosque.
Filmmaker: Kinanty Andini
Kinanty Andini is a freelance graphic design and digital artist. She is affiliated with the Indonesia Mental Health Association (IMHA), also known as the Association of Healthy Souls. Read more about Kinanty Andini
Transcript for ‘I Feel Like an Outsider’
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About this video Salted Success
DJP Fellow Naufal Asy-Syaddad shares the journey of Faisal, a 28-year-old autistic entrepreneur who produces up to 3,000 salted eggs per month, serving customers across Indonesia.
Filmmaker: Naufal Asy-Syaddad
Naufal Asy-Syaddad is a disability rights activist with autism and chairperson of Yogasmara Foundation's youth group. Read more about Naufal Asy-Syaddad
Transcript for Salted Success
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About this video Dramatic Waves of Change
Kiribati native Ruby Nabetari has witnessed first-hand the severe and rapid impacts of global warming. She hopes that through theater, she can speak volumes to policymakers deciding the fates of climate-vulnerable nations.
Filmmaker: Faaolo Utumapu-Utailesolo
Faaolo Utumapu-Utailesolo is the Program Officer for the Pacific Island Countries for the Disability Rights Fund and the Disability Rights Advocacy Fund. Read more about Faaolo Utumapu-Utailesolo
Transcript for Dramatic Waves of Change
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About this video Cultural Survival
In rural Nepal, Indigenous women with disabilities rely on traditional practices for their livelihoods, but restrictive state policies are causing hardship. They call on the government to support their traditional knowledge and skills.
Filmmaker: Bhawana Majhi
Bhawana Majhi is an advocacy and communication officer at the National Indigenous Disabled Women Association - Nepal (NIDWAN). Read more about Bhawana Majhi
Transcript for Cultural Survival
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About this video Deputy Mayor Kauma
Fazira Kauma toppled political barriers in Uganda when she became the first woman and the first blind citizen to be appointed deputy mayor in Jinja. She says disability representation in politics is key.
Filmmaker: Christine Oliver Dhikusooka
Christine Oliver Dhikusooka is executive director of One Voice Heard 4 Disability Uganda (OVH4DU), which advocates for the rights of women with disabilities in Uganda. Read more about Christine Oliver Dhikusooka
Transcript for Deputy Mayor Kauma
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About this video On the Frontlines of the Climate Crisis
As the effects of climate change intensify, severe flooding will become increasingly common in Samoa, disproportionately impacting persons with disabilities. Activists say accessibility must be central to emergency response plans.
Filmmaker: Sa Utailesolo
Sa Utailesolo has been working at the National Advocacy Organisation of Persons with Disabilities, Nuanua O Le Alofa, as a finance and administration coordinator for nearly 15 years. Read more about Sa Utailesolo
Transcript for On the Frontlines of the Climate Crisis
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About this video ‘Knowledge is Power’
The Samoa Blind Persons Association recently produced the first Braille translation of the Samoan government's disaster risk management booklet. DJP Fellow Ari Hazelman was a key advocate in this enormous step forward.
Filmmaker: Ari Tommy Hazelman
Ari Tommy Hazelman is a blind 34-year-old Samoan man posted as the disability inclusive officer for the Samoa Blind Persons Association (SBPA). Read more about Ari Tommy Hazelman
Transcript for ‘Knowledge is Power’
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About this video Gender Justice
In the workplace, Samoan women with disabilities face a complex web of discrimination arising from the convergence of gender and disability biases.
Filmmaker: Faaolo Utumapu-Utailesolo
Faaolo Utumapu-Utailesolo is the Program Officer for the Pacific Island Countries for the Disability Rights Fund and the Disability Rights Advocacy Fund. Read more about Faaolo Utumapu-Utailesolo
Transcript for Gender Justice
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About this video ‘Life Is Possible’
At different points in their lives, Dorothy Natako Mubezi and Irene Isiko faced challenges as Ugandan women with psychosocial disabilities. They both found their own paths forward with the help of their community.
Filmmaker: Esther Suubi
Esther Suubi is an advocate for young girls and women's voices and a peer educator at Triumph Mental Health Support. Read more about Esther Suubi
Transcript for ‘Life Is Possible’
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About this video ‘Nobody Will Be Giving Me Any Coin’
DJP Fellow Christine Oliver Dhikusooka sets out to learn why only 1.3 percent of formally employed Ugandans are disabled. Along the way, she interviews a mother who makes fishing nets and a Deaf schoolteacher.
Filmmaker: Christine Oliver Dhikusooka
Christine Oliver Dhikusooka is executive director of One Voice Heard 4 Disability Uganda (OVH4DU), which advocates for the rights of women with disabilities in Uganda. Read more about Christine Oliver Dhikusooka
Transcript for ‘Nobody Will Be Giving Me Any Coin’
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About this video ‘I Swallow Medicine But Run Short on Food’
Ugandans with disabilities who are HIV positive are at greater risk of secondary infections because of a lack of access to nutritious food. Advocates ask the government for more support.
Filmmaker: Nissy Namuyomba
Nissy Namuyomba is an administrative assistant at the Masaka Association of Persons with Disabilities Living with HIV/AIDs and a volunteer with the Masaka Association of Persons with Cerebral Palsy in Uganda. Read more about Nissy Namuyomba
Transcript for ‘I Swallow Medicine But Run Short on Food’
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About this video ‘The Children Can’t be Wrong’
For World Autism Awareness Day, DJP Fellow Naufal Asy-Syaddad explores what it's like to be autistic in Indonesia in 2023. He interviews friends from his hometown and shares his own hopes and dreams.
Filmmaker: Naufal Asy-Syaddad
Naufal Asy-Syaddad is a disability rights activist with autism and chairperson of Yogasmara Foundation's youth group. Read more about Naufal Asy-Syaddad
Transcript for ‘The Children Can’t be Wrong’
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About this video ‘We Are Born Perfect’
Rina Prasarini has a message for disabled women: "Don't give up. Keep fighting." In 'We Are Born Perfect,' DJP Fellow Retta Maha interviews the entrepreneur, disability rights activist, and single mother of two.
Filmmaker: Mahretta Maha
Mahretta Maha is a disability rights activist living with blindness. She is a program officer at the Association for Disability Access Elections (PPUAD) for the National Coalition of Organizations with Disabilities. Read more about Mahretta Maha
Transcript for ‘We Are Born Perfect’
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About this video One Voice
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.
Filmmaker: Esther Suubi
Esther Suubi is an advocate for young girls and women's voices and a peer educator at Triumph Mental Health Support. Read more about Esther Suubi
Transcript for One Voice
The video starts with a black screen and soft piano music.
Fade to Gorret Namwanje, a young Ugandan woman and self-advocate at Triumph Mental Health. She wears an orange T-shirt, has braids in a ponytail, and sits in a blue plastic chair in a room. An informational poster hangs on a wall behind her.
Fade to Gorret Namwanje sitting in the room and speaking to the camera: “My name is Namwanje Gorret. I’m at advocate in Triumph Uganda Mental Health Support and Recovery Program. I’m having a psychosocial disability. I joined a vocational institute, and I’m also Guild president.”
Cut to Namulondo Irene, a Ugandan woman with a short afro wearing a purple dress. Namulondo is a teacher by profession and is now a cleaning lady. She sits in a blue plastic chair outside and speaks to the camera in Lagunda: “My name is Namulondo Irene. I am 38 years old. I do stay in Mbiko. I am a hard-working lady with a family and children.” Leaves are in the background.
Cut to Nambala Hilda Mpandi, a Ugandan woman with a pulled-backed hairstyle who wears an orange patterned dress. Mpandi, a mother and teacher of a nursery class, sits in a blue chair outside a brick building and speaks to the camera in Lagunda with hand gestures: “My name is Nambala Hilda Mpandi. I stay in Jinja, in a place called Musiima, and I have four children.”
Cut to Namwanje sitting in the room, “I studied and completed my senior year, and now I’m on a vocational institute, doing a course of hairdressing.”
Cut to Namwanje and a Ugandan woman wearing a headscarf. They both plait a young Ugandan woman’s hair in a room while two other Ugandan women sit on a bed on the left and observe. A third Ugandan woman sits on another bed in the background. Namwanje’s voiceover continues, “I’m able to cope up with the psychosocial disability.”
Cut to Namwanje speaking, “I left school because ever since I joined Triumph Uganda Mental Health Support and Recovery Program they have been giving me advice, counseling me, on how I could stay with a psychosocial disability.”
Cut to a slow-motion shot of Irene opening a door and stepping outside. She sits in a brown chair on a porch. Irene’s voiceover says, “First and foremost, I’m a teacher by profession. I taught years back before getting the mental health challenges that I have right now.”
Cut to Irene sitting outside, “It then became difficult for me to teach because the medicine I take would make me sleep. And yet I have children to teach, so I decided to stop teaching and started to work for an organization that deals with electricity.”
Cut to Mpandi sitting in a blue chair outside opposite another Ugandan woman at a table who wears an orange headscarf and a dark blue patterned dress. They both converse. Mpandi voiceover says, “I got this mental health challenge in 2004.”
Cut to Mpandi sitting outside and speaking with hand gestures, “I hadn’t yet started working as a teacher.”
Cut to a pull-out shot of Mpandi speaking to the woman at the table, Robinah Alambuya, founder of Triumph Mental Health. Mpandi’s voiceover continues, “My husband was working as a driver at Wairaka College and passed on in 2003. The workers at the college created for me the opportunity to work as a tea lady. And as I served the teachers, that is when I got a mental health challenge.”
Cut to Mpandi speaking with hand gestures.
Cut to Namwanje speaking, “Because at school I’m the only person having psychosocial disability I know how to control myself, what I should do, and what I should not because now I’ve taken a long time with it and I know the signs.” The piano music fades out.
Cut to Irene sitting in a brown chair, on a porch, with a plate of food. A Ugandan woman, wearing a blue dress with pink flowers and a blue headscarf, holds a plate of food and joins Irene on the left. Another Ugandan woman, who has a short afro and wears an orange-and-gray plaid shirt over a green dress, joins Irene on the right.
Cut to Irene speaking, “I work as a house cleaner. In case there are visitors that have come, I wash for them, mop, iron their clothes. That is it basically.”
Cut to a slow-motion shot of Namwanje walking outside with another Ugandan woman. The other woman has shoulder-length black hair, holds a white shoulder bag, and wears a black blazer over a multi-colored patterned dress. Namwanje’s voiceover says, “There is a day I was ill and I had not told my dormmates.” Birds chip off-camera.
Cut to Namwanje speaking with hand gestures, “That I’m having this psychosocial disability and I was not okay. Some just laughed at me as they thought they were ghosts. But after I told everyone about psychosocial disability others thought that it can be spread and they couldn’t come near me. And I explained to them everything about psychosocial disability since I had learned much from Triumph Uganda Mental Health Support and Recovery Program.”
Cut to a slow-motion shot of Mpandi walking toward a brick house with Alambuya and a rooster crowing off-camera. Mpandi’s voiceover says, “But I have challenges with my daughter, Adonai Jane Mpandi, who has challenges in her mental health.”
Cut to Mpandi speaking with hand gestures, “That because I went through such a phase, I try my best to help control some situations that she experiences.”
Cut to a slow-motion shot of Mpandi and Alambuya entering a brick house. Mpandi’s voiceover continues, “I usually encourage her to keep at home and not to talk too much, if possible.”
Cut to Mpandi speaking with hand gestures.
Cut to Irene speaking with hand gestures, “When I used to teach I faced a lot of challenges. I had to make the scheme of work, lesson plan daily, and also to deal with the children. Due to the medication, I would sleep. But when I changed the job, there was minimum supervision. I am not working with many people, so it is easier for me. When I arrive, I wash if there are clothes to be washed.” Guitar music plays in the background for the duration of the video.
Cut to a close-up shot of someone mopping hardwood floors. Irene’s voiceover continues, “Mop, then iron, and finally, head back home.”
Cut to a close-up shot of someone wearing an orange shirt and ironing a beige shirt on an ironing board.
Cut to a push-in shot of wooden desks and chairs in a classroom. Irene’s voiceover continues, “Where I worked as a teacher, every mistake that was made was always pinned on me.”
Cut to Irene speaking, “For example, if I was on duty with a colleague, they would leave all the work for me to do. And if I missed out on doing some of the work, I was reported and accused. In class, we were usually three teachers, but due to the sleeping issue, my other colleagues wouldn’t understand, so they would report me to the head teacher and he would complain as well as threaten to fire me. I would be on tension and even lose sleep due to the stress, making me want to go back to hospital and yet I am on medication.”
Cut to a push-in shot of Namwanje and a Ugandan woman plaiting a young Ugandan girl’s hair, surrounded by three other Ugandan women who observe. Two of the three women who watch the plaiting sit on a mattress and talk to each other. Someone off-camera, on the left, touches the head of the third woman on camera. Namwanje’s voiceover says, “When I got ill, it was a weekend. It was a Sunday. I was plaiting someone’s head, and we were like four hairdressers on it. It was the first month when I joined the school. I started plaiting. I told my friends, ‘I’m not okay. Please help me. Take me to my dormitory.’”
Cut to Namwanje speaking, “I fall down, knocked my head in the stone, I told them. Then I could talk. I was having some energy, and I wanted to even work. But another one, the one who was moving on a wheelchair, she’s the one who came to help me. The others, they were just laughing at me.”
Cut to a close-up shot of Mpandi speaking.
Cut to Mpandi speaking with hand gestures, “I gained the courage to speak up. I have a mom in Mbiko called Rachel Namuwaya. She encouraged me not to despise myself because this is almost like any other disease.”
Cut to Mpandi standing up from a blue chair at a table outside and hugging Alambuya. Mpandi’s voiceover continues, “Also Mum Robinah [Alambuya] gave me psychosocial support and say that I will still be able to work.”
Cut to Mpandi speaking with hand gestures, “Despite the mental health challenge. With time I was able to start up this school called Sitanist.”
Cut to images of swirling mathematical symbols, equations, and numbers on a blackboard.
Cut to a close-up shot of someone picking up white chalk and drawing a line on a blackboard surface. Mpandi’s voiceover continues, “I was in shock because I couldn’t believe that something good would come out of me.”
Cut to Mpandi speaking with hand gestures, “All thanks to my mothers.”
Cut to Namwanje speaking, “Another day, they told us to plait hair when the teacher was around. They started laughing at me, that that girl has epilepsy. Don’t be near her. When you jump on her urine, you will get the sickness.”
Cut to a close-up shot of Namwanje speaking, “It’s made me to start advocating.”
Cut to Namwanje speaking, “My fellow students here at school to know more about psychosocial disability.”
Cut to black text on a yellow screen that says, “‘If disability is one of the great human rights challenges of this century, then within this, psychosocial disability remains one of the most challenging and misunderstood areas of disability.’ – Paul Deany, DRF Program Officer.”
Cut to Mpandi speaking with hand gestures, “To all those that have mental disabilities or other disabilities should not be segregated because they are blessings. They should also not despise themselves but encourage each other and trust in the Lord and pray to him because he has the reason as to why they are the way they are. And he will use them to do whatever he wishes for them to do.”
Cut to a black screen.
Cut to black text with a yellow border on a black screen that says, “Made with support from the Disability Justice Project and the Disability Rights Fund.” The Disability Justice Project logo is a large yellow “D” with a black play button in the middle to signify video storytelling, and white text says “Disability Justice Project” on the bottom left. The Disability Rights Fund logo – a white box with black text that says, “Disability Rights Fund” – is on the bottom right of the screen.
Fade to a black screen.
The guitar music fades out.
About this video ‘Blind Persons Can Do Massage Therapy’
Beth Gatonye founded Seeing Hands Rwanda after noticing the high unemployment rate among Rwandans with disabilities. Her organization is working with participants to transition from training to employment.
Filmmaker: Esther Mukampogazi
Esther Mukampogazi is a project manager and advocacy coordinator at the Organization of Women with Disabilities for Health Promotion and Development in Rwanda (OWDHD). Read more about Esther Mukampogazi
Transcript for ‘Blind Persons Can Do Massage Therapy’
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About this video Out of Their Hands
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.
Filmmaker: Mahretta Maha
Mahretta Maha is a disability rights activist living with blindness. She is a program officer at the Association for Disability Access Elections (PPUAD) for the National Coalition of Organizations with Disabilities. Read more about Mahretta Maha
Transcript for Out of Their Hands
The video starts with slow piano music.
Fade to black text on a yellow screen that says, “Due to limited education and employment opportunities, only half of all Indonesians with disabilities are employed.” On the bottom left of the screen, black text says, “Institute for Economic and Social Research | Faculty of Economics and Business, University of Indonesia.”
Fade to black text on the same yellow screen that says, “For Indonesians who are blind or low vision, the options are even more limited.”
Fade to Sadiah, an Indonesian woman wearing a green hijab, sitting on a gray couch and speaking to the camera in Bahasa Indonesia: “My name is Sadiah. I am visually impaired.”
Cut to pull-out shot of Sadiah kneeling and massaging the foot of a client who lays on a gray mattress on the floor.
Cut to a pull-out shot of Sadiah massaging the back of the client, who is an Indonesian man. Sadiah’s voiceover continues, “I am a housewife and work as a masseur. I only have a very simple place.”
Fade to black text on a yellow screen that says, “The tradition of blind masseurs in Indonesia has existed for centuries, but now these practitioners face heavy competition from larger massage parlors and spas.”
Fade to black text on a yellow screen that says, “COVID-19 has only intensified these inequities as customers worry about social distancing and prefer to book appointments online.”
Cut to a pull-out shot of a sign in Bahasa Indonesia advertising the Rohim Blind Massage Parlor.
Cut to Sadiah sitting in the room, “Before the pandemic, I had already experienced a decrease in income.”
Cut to a pull-out shot of a sign in Bahasa Indonesia advertising the Rohim Blind Massage Parlor. Sadiah’s voiceover continues, “For example, if in the past I could massage three or four patients in one day, for now, in one day or one week I can only get three patients, which is very lucky.”
Cut to Sadiah speaking, “Especially during the pandemic, in the past two years.”
Cut to the sun rising over a deserted commercial street. Some birds fly across the street and land on the left sidewalk.
Cut to Sadiah speaking, “We masseurs, especially me, really had no patients who wanted to visit or use my services or our services for blind masseurs.”
Cut to a close-up shot of an Indonesian man pressing buttons on a large speaker strapped to his chest while a song plays from the speakers. He stands in a room.
Cut to Sutoro, the man with the speaker, singing into a microphone hanging from a cord around his head. Sutoro has gray hair and wears a red-and-gold shirt. In Bahasa Indonesia, his voiceover says, “My name is Sutoro.”
Cut to a blue-and-white sign in Bahasa Indonesia advertising the Blind Massage Parlor Assisted by West Jakarta Social Sub-Department. Sutoro’s speakers play a song in the background.
Cut to Sutoro massaging a client’s leg as they lay on a multi-colored massage table. Sutoro’s voiceover continues, “And my profession is a masseur or doing massages.” Music playing from Sutoro’s speakers fades into emotional piano music.
Cut to Sutoro standing in front of a white wall and speaking to the camera: “But because of the situation and condition.”
Cut to Sutoro wearing sunglasses and using a white cane to walk on an edge of a busy street. A speaker is strapped to his chest, and several motorcyclists move by the street. Sutoro’s voiceover continues, “I ended up changing professions.”
Cut to Sutoro standing in the room, “Namely, in the morning I go to the market to carry out activities to become a street artist or busking.”
Cut to Sutoro singing into his microphone and adjusting his speaker in a room.
Cut to a photo of an Indonesian woman wearing a green hijab and carrying many bags of crackers along the side of a road. An Indonesian boy, wearing a camouflage baseball cap, walks with her on the left. Cars and motorcyclists move by the road. Sutoro’s voiceover continues, “In the afternoon, I sell crackers around.”
Cut to a push-in shot of Sutoro massaging a client’s leg on a multi-colored massage table. His voiceover continues, “Because the massage profession is not sufficient for daily needs.”
Cut to a masseuse who is an Indonesian woman with black hair in a pulled-back hairstyle. She massages a white woman’s legs on a luxurious massage table overlooking the ocean. The client smiles as she receives her massage.
Cut to a close-up shot of a masseuse massaging a client’s feet. Sutoro’s voiceover continues, “Because now there are lots of sighted people doing massages.”
Cut to Sutoro speaking, “And now there are lots of massage places whose places are more luxurious because they have money.”
Cut to the Indonesian woman massaging another client’s back on a massage table. The client is a white woman wearing a bikini. The sun sets over trees and a bungalow in the background. Sutoro’s voiceover continues, “So the massage profession of the blind is eliminated.”
Cut to a push-in shot of a busy market in Jakarta and motorcyclists parked by the market stalls. Two identical high-rise buildings are in the background. Sutoro’s voiceover continues, “So I was forced to switch professions.”
Cut to Sutoro speaking, “Being a street artist is actually quite a challenge.”
Cut to several pedestrians and motorcyclists brushing past a busker, who is blind, in a busy market. The busker, an Indonesian man with short graying hair, holds a white cane. A microphone whose cord is around his neck, and a speaker is strapped to his chest. Motorcyclists honk and pedestrians speak in the background. Sutoro’s voiceover continues, “In the market, the barriers are clearly the passing of motorbikes.”
Cut to Sutoro speaking, “So we have to be really careful because there are quite a lot of motorbikes pacing back and forth.”
Cut to the busker, who is blind, in the crowded market.
Cut to a cracker seller, an Indonesian woman wearing a beige hijab, sitting on the side of a busy road with many bags of crackers. The seller eats out of one of the bags. An Indonesian girl with long black hair sits next to the woman while a cyclist and motorcyclist move by on the street.
Cut to another cracker seller, an Indonesian woman with black hair in a pulled-back hairstyle, sitting on the side of a busy road. Several cracker bags hang on a brown stick in front of her, and several motorcyclists move by the street. Sutoro’s voiceover continues, “When selling crackers, it’s not only blind people who sell them, now even sighted people sell them.”
Cut to the second cracker seller sitting on the side of a busy road at night. Cars and motorcyclists move by the street. Sutoro’s voiceover continues, “So it’s getting lonely, and I often throw them away because they don’t sell.”
Cut to Sutoro speaking, “So the crackers end up being wasted.”
Cut to a busker, an Indonesian man with short black hair, singing into a microphone from a curb at night and holding a white cane. Motorcyclists move by the street, and traffic noises are in the background.
Cut to Eka Setiawan, a middle-aged Indonesian man with short black hair. Setiawan wears a gray shirt, sits in front of a yellow wall, and speaks to the camera in Bahasa Indonesia: “I am Eka Setiawan.”
Cut to Setiawan wearing a white prayer cap, white earbuds, and speaking through a PA system at a large meeting. Most women at the meeting wear black hijabs, and most men have short black hair. One woman has black hair, and one man wears a blue-and-white prayer cap. All the meeting attendees wear face masks. Setiawan’s voiceover continues, “I am a blind activist who fights for the rights of people with disabilities.”
Cut to Setiawan standing in front of the yellow wall, “Since Indonesia ratified the UNCRPD in 2011 with Law 19 of 2011 which then domesticated the Law on Persons with Disabilities, Indonesia issued a disability law in 2016.”
Cut to a screenshot of black text on a white screen that says, “PRESIDENT OF THE REPUBLIC OF INDONESIA | LAW OF THE REPUBLIC OF INDONESIA NUMBER 8 OF 2016 CONCERNING PERSONS WITH DISABILITIES,” in Bahasa Indonesia.
Cut to Setiawan speaking, “Until today, the existing conditions still make it difficult for people with disabilities.”
Cut to a busker, an Indonesian man wearing a black baseball cap. The man sings into a microphone whose cord is around his neck, and a speaker is strapped to his chest. He walks from car to car on a busy road, and traffic noises are in the background. Setiawan’s voiceover continues, “Especially the visually impaired, to carry out their profession.”
Cut to Sadiah massaging a client’s leg on a gray mattress.
Cut to Setiawan speaking, “And incidentally most of the visually impaired still work as masseurs.”
Fade to black text on a yellow screen that says, “In South Korea, only people who are legally blind are allowed to become professional masseurs.”
Fade to black text on a yellow screen that says, “Indonesian activists have advocated for a similar law in their country to protect the livelihoods of those who are blind or low vision.”
Cut to Setiawan speaking, “In the current situation, the profession of a masseur for the blind does not seem to be a promising profession.”
Cut to a close-up shot of Sutoro massaging a client’s leg on a multi-colored massage table.
Cut to pull-out shot of a white towel on a fancy massage table in a massage parlor. Tiny green lights line one section of the floor in front of the massage table.
Cut to Setiawan speaking, “The massage profession has been cultivated by many non-disabled people whose packaging can certainly be much better and with much stronger capital, putting blind friends into the massage profession.”
Cut to a busker, an Indonesian man with black hair in a pulled-back hairstyle, singing into a microphone on a busy street at a market. Pedestrians and motorcyclists move by him, and music plays from a speaker.
Cut to an Indonesian woman, wearing a beige hijab, stopping to give money to a busker at a busy market. The busker, an Indonesian man, wears a blue cap and uses a white cane. A motorcyclist passes closely by the busker, and some people at the market wear face masks. Setiawan’s voiceover speaking, “Inevitably, blind friends change professions.”
Cut to Setiawan speaking, “I am sure that blind friends understand that the work they do is risky work.”
Cut to an Indonesian woman wearing a brown hijab and holding a white cane on a busy street. She sings into a microphone whose cord is around her neck, and a speaker is strapped to her chest. Setiawan’s voiceover continues, “But there are not many professional choices that can be made by blind friends. The advocacy needs to be continued.”
Cut to Setiawan speaking, “The hope that can be conveyed to all parties is that opportunities for friends with disabilities or blind people as masseurs must indeed be opened as widely as possible.”
Cut to an Indonesian woman wearing a white hijab. She stops a busker, an Indonesian man with black hair in a pulled-back hairstyle, to put money in his bag at a busy market. Music plays from a speaker.
Cut to Setiawan speaking, “And can actually be managed better. For example, in the world of tourism, the world of hospitality.”
Cut to an aerial shot of a luxury hotel in Indonesia. A large pool and trees surround the hotel.
Cut to Eka speaking, “So that blind people have better opportunities in their profession as masseurs.”
Fade to black text with a yellow border on a black screen that says, “Copyright – @2022 PPUA Disabilitas. All rights reserved.”
Fade to black text with a yellow border on a black screen that says, “Made with support from the Disability Justice Project and Disability Rights Fund.” The Disability Justice Project logo is a large yellow “D” with a black play button in the middle to signify video storytelling, and white text says “Disability Justice Project” on the bottom left. The Disability Rights Fund logo – a white box with black text that says, “Disability Rights Fund” – is on the bottom right of the screen.
The emotional piano music fades out.
About this video A ‘Bitter Pill’
Lily Puspitasari and Nurhayati Ratna Sari Dewi, two Indonesian women with psychosocial disabilities, speak out against workplace discrimination. *Audio descriptions for blind and low-vision audiences.
Filmmaker: Kinanty Andini
Kinanty Andini is a freelance graphic design and digital artist. She is affiliated with the Indonesia Mental Health Association (IMHA), also known as the Association of Healthy Souls. Read more about Kinanty Andini
Transcript for A ‘Bitter Pill’
The video starts with a piano instrumental and a video of cyclists, vehicles, and pedestrians moving by a street in Jakarta, Indonesia. High-rise buildings are in the background.
Fade to a timelapse of vehicles moving by a traffic-packed, tree-lined street in Jakarta. High-rise buildings are in the background. An Indonesian woman’s voiceover in Bahasa Indonesia says, “I used to work in a company in Jakarta. In 2012 I was fired because I was discovered as a person with a mental disability.”
Cut to the person behind the voiceover – Nurhayati Ratna Sari Dewi, an Indonesian woman wearing a yellow hijab. She is the head of the Indonesian Mental Health Association (IMHA)’s branch in Jakarta. Dewi sits outside and speaks to the camera: “I have worked for 20 years at my job. But at that time I had a bitter experience that I was discovered to have bipolar disorder. And then, I was dismissed.” Several plants and an exterior stairway are behind her.
Cut to Dewi working on a laptop in an office. She looks up to speak to someone off-camera. A long desk with office items is behind her.
Cut to Dewi speaking outside, “When I first started working, everything was normal. I started experiencing mental disability around 1997 when I was 18 years old. At that time, my condition was still mild, so I didn’t need to go to the doctor every month.”
Cut to Dewi sitting at a table outside. She is wearing glasses and a purple hijab. She speaks to a co-worker, who is wearing a white hijab on the left, and another person who is off-camera.
Cut to Dewi speaking, “I had a relapse in 2011 when I experienced baby blues postpartum. I did not know that this disease (Bipolar Disorder) should have regular treatment at the doctor every month.”
Cut to Dewi looking over a document with a co-worker in the office. Her co-worker, seated to the left, runs through the document with a pen. A laptop is in front of Dewi. Dewi is wearing a beige hijab, and her co-worker is wearing a white hijab. Another co-worker, wearing a black hijab, sits at the long desk in the background. Dewi’s voiceover continues, “I relapsed again in 2012. When I relapsed in 2011, I didn’t tell my boss that I was going to a psychiatrist.”
Cut to Dewi speaking, “And then when I went to a psychiatrist and it was discovered by the company’s doctor that I have bipolar disorder, eventually the stigma develops.”
Cut to Dewi speaking on a cell phone. She sits on a blue-and-white chair and leans against a white wall.
Cut to Dewi speaking, “At that time, I accepted that fact because the stigma of a person with a mental disability or mental illness was very negative.”
Cut to a pan shot of Dewi and two co-workers working on laptops in an office. A woman is seated on the left, Dewi is in the middle, and a man wearing glasses is on the right. Dewi’s voiceover continues, “If I get caught, I’ll be laid off just like that, so I just took that bitter pill.”
Cut to Dewi looking through documents in the office. A man stands behind her. Dewi’s voiceover continues, “At the same time, my co-worker was suffering from chronic kidney disease.”
Cut to Dewi speaking, “Which means he and I both have a chronic disease, a long-term disease. But back then I was fired, whereas he wasn’t fired. I find this very unfair.”
Cut to Dewi listening and taking notes in a notebook as someone off-camera speaks to her. Dewi sits outside with another person. She is wearing a black hijab, black glasses, and a multi-colored face mask.
Cut to Dewi speaking, “The disadvantage for person with mental disability at that time, is that we were not given reasonable accommodation, for example, a sick leave for us to rest. Instead, they judge us immediately. The disadvantage is that the stigma and discrimination against us is very unfair.”
Cut to Dewi and the two co-workers working on laptops in an office. The man removes an earbud and speaks to Dewi and the other co-worker. Dewi’s voiceover continues, “We were not given the opportunity to work, so it’s very detrimental for us.”
Cut to Dewi speaking, “But now there is law number 8 of 2016 where a person with disabilities cannot be fired for reasons of disability.”
Cut to a green-and-purple informational sign about the Indonesian Mental Health Association in Bahasa Indonesia. One forearm crutch is next to the informational sign.
Cut to Dewi speaking, “The solution for people with mental disability in general is actually reasonable accommodation, those adjustments. For example, we people with mental disability have to go to a psychiatrist every month, so what we hope from the company or the government, which will make government regulations reasonable accommodations.”
Cut to a close-up shot of an Indonesian woman’s hands as she works on a laptop. The woman is wearing a white hijab, and plants are in the background.
Cut to Dewi speaking, “Is that they will allow us to see a psychiatrist for regular check-up once a month without any leave deductions. Second, we hope that they will give us time to rest when we are sick, don’t fire us.”
Cut to an Indonesian woman wearing a light pink hijab and suit. She walks to a window, takes a deep breath, and smiles. A shelf with plants is in the background. Dewi’s voiceover continues, “Third, provide us a quiet room to relax when we’re burned out or when we need some time to rest.”
Cut to Dewi speaking, “Fourth, give us worktime flexibility, because sometimes it’s hard for us to fall asleep at night. Also, allow us to come late or allow us to do our work from home because the important thing now is that we get our work done.”
Fade to two office workers looking over financial documents with pens. In front of them, a laptop and a computer are on a table. An Indonesian woman’s voiceover in Bahasa Indonesia says, “I used to work in a hotel in Bandung as accounting staff.” The piano instrumental from the start of the video transitions to another piano instrumental.
Cut to the person behind the voiceover – Lily Puspitasari, a young Indonesian woman with long black hair. She is wearing black glasses, sitting in a room, and speaking to the camera: “My co-workers didn’t distinguish their attitude toward me because my illness had not been discovered at the time. But later, I attached a letter from a psychiatrist, that’s why my illness was discovered.”
Cut to a close-up shot of an Indonesian person opening a letter at a desk. A laptop, pen, and notebook are on the desk.
Cut to Pupsitasari speaking, “It was my own initiative because I skipped work for 2 days.”
Cut to a close-up shot of Puspitasari speaking, “Their response was very different from what I expected. Because I was expecting them to understand why I skipped 2 days of work.”
Cut to Puspitasari stepping through a brown door.
Cut to Puspitasari speaking, “But then, I didn’t get a first warning letter nor a second warning letter, but I was fired the next day after I attached the letter from my psychiatrist.”
Cut to Puspitasari sitting outside and flipping through a magazine. Her voiceover continues, “In my opinion, they should have given me a chance to explain why I attached the letter.”
Cut to Puspitasari speaking.
Cut to an Indonesian woman looking upset. She is frowning, and her hands are on her temples. The woman’s black hair is in a pulled-back hairstyle. She sits at a desk, and on the right, a small cardboard box contains binders and other office items. A co-worker walks up to her and pats her shoulders to console her.
Cut to Puspitasari speaking, “They shouldn’t have fired me immediately and the government should have given us reasonable accommodations, so that I can feel like there’s a second chance to work. For example, a quiet room when we’re stressed or if we feel our productivity is low.”
Cut to plants, a table, and two chairs on a skyscraper balcony. Other skyscrapers are in the background.
Cut to Puspitasari speaking, “Work can also be done from home.”
Cut to a close-up shot of an Indonesian person’s hands working on a laptop at a desk. A stack of books is on the desk. Puspitasari’s voiceover continues, “Because psychiatric medicine sometimes makes it hard for us to wake up in the morning.”
Cut to Puspitasari picking up a drink next to a kitchen stove and taking a sip. The kitchen’s counters are full of cooking ingredients and cooking tools. Her voiceover continues, “So it would be better if the usual worktime started at 8AM and finished at 5PM, shifted to start at 10AM and finish at 7PM. It’s fine in my opinion.”
Cut to a young Indonesian woman wearing a beige hijab. She is working at a computer in an office with two co-workers. All the workers are wearing blue shirts.
Cut to Puspitasari speaking, “Society should not treat us differently because we are the same human beings who have many shortcomings. So it’s better not to discriminate us because it will make us feel down.”
Fade to black text with a yellow border on a black screen that says, “Copyright – @2022 IMHA. All rights reserved.”
Fade to black text with a yellow border on a black screen that says, “Made with support from the Disability Justice Project and Disability Rights Fund.” The Disability Justice Project logo is a large yellow “D” with a black play button in the middle to signify video storytelling, and white text says “Disability Justice Project” on the bottom left. The Disability Rights Fund logo – a white box with black text that says, “Disability Rights Fund” – is on the bottom right of the screen.
About this video ‘Not To Be Feared’
Jongaya is one of Indonesia's last leprosy settlements. Many people choose to live here to escape discrimination and stigma. *Audio descriptions for blind and low-vision audiences.
Filmmaker: Dija
Dija is chairperson of the Association of Indonesian Women with Disabilities (HWDI)’s branch in Simbang in the Indonesian province of South Sulawesi. Read more about Dija
Transcript for ‘Not To Be Feared’
The video starts with cars and motorcycles moving by a busy street in front of the entrance of Jongaya Village in South Sulawesi, Indonesia. A large banner in Bahasa Indonesia, featuring two Indonesian men, hangs across a red-and-white arch over the Jongaya Village entrance, and a motorcyclist enters the village. Vehicles honk, and soft piano music plays in the background throughout the video.
Cut to black text on a yellow screen that says, “Jongaya Village is one of the few leprosy settlements that still exist in Indonesia today.” Audio of vehicle noises fades out.
Cut to black text on a yellow screen that says, “In the past, people with leprosy were forcibly quarantined, but today no one is compelled to live in Jongaya.”
Cut to black text on the same yellow screen that says, “Many decide to move here after experiencing discrimination in their own communities.”
Cut to Rahimi Daeg Rani, an Indonesian man who has experienced leprosy. Rani wears a red-and-white prayer cap, sits in a room and speaks to the camera in Bahasa Indonesia: “My parents used to live in a ward, when there was a ward at Jongaya Hospital.”
Cut to a pan shot of six Indonesian men sitting outside a building with graffiti on the exterior. An Indonesian girl walks up to the men. Rani’s voiceover continues, “When I was in elementary school, I had white stripes on my thighs and arms.” People talk off-camera.
Cut to Rani speaking in the room, “At that time my parents said, ‘You have to go for treatment because you have white stripes.’ Well, from there, I was immediately taken to the health center by my parents.” People talk and laugh off-camera.
Cut to an orange cat sitting in a narrow alleyway between houses with rusted corrugated metal roofs. The cat lifts its right leg and scratches itself.
Cut to Rani speaking, “I entered here in Jongaya. I am happy because everyone is nice and friendly. We are the same people with disabilities.”
Cut to an Indonesian woman, wearing a green hijab, walking down an alleyway lined with laundry hung up to dry. Children talk off-camera, and an Indonesian child, at a window in a house to the left, waves to the woman. Rani’s voiceover continues, “There’s no interference.”
Cut to Rani speaking, “But if we go out on the street [outside Jongaya], many cars [public transportation] don’t want to take us people with visible disabilities.” People talk off-camera.
Cut to a multi-colored screenshot of an Indonesian news article with a headline in black text that says, “Stigma and Discrimination are Still Challenges for Leprosy Elimination in Indonesia,” in Bahasa Indonesia. Bimo Aria Fundrika wrote the news article for “Suara.com,” published on February 3, 2022.
Cut to Rani speaking, “Mine aren’t visible, but the visible ones, they are not allowed.” People talk off-camera.
Cut to a tilt shot of a telephone poll with many wires from nearby houses. A house with brick walls is on the left, and a child talks off-camera.
Cut to Rani speaking, “I prefer to be here because people from outside are dared enough already to enter here.”
Cut to a motorcyclist moving by an alleyway. A parked motorcycle leans on a rusted corrugated roofing sheet on the right, and a house with brick walls is on the left. Someone speaks off-camera.
Cut to Rani speaking, “It’s not the same as in the past. In the past people outside did not want to come here because in the past, people were very discriminatory.”
Cut to the red-and-white arch with a large banner in Bahasa Indonesia, featuring two Indonesian men, hanging over the entrance to Jongaya Village.
Cut to Rani speaking, “We can say that Jongaya has a history too. That’s why the very outside gate, all the people here forbid its demolition because it shows the year Jongaya was founded.” People talk and laugh off-camera.
Cut to Indonesian children playing outside a two-story house with a rusted corrugated metal roof overlooking a canal that reflects the home. An Indonesian woman with shoulder-length black hair watches over the children.
Cut to Al Qadri, an Indonesian man and leprosy activist who has experienced leprosy. He has short black hair and eyeglasses, sits on a gray couch in a room and speaks to the camera in Bahasa Indonesia with hand gestures, “I was in this leprosy complex because of the stigma and discrimination against people who have leprosy. It was about 20 years ago. The stigma was still very vicious, very strong. So that if there is a family member experiencing leprosy, that person is banished from the family.”
Cut to a close-up shot of a rock hanging from a string tied to a telephone wire on a clear day outside.
Cut to Qadri speaking in the room with hand gestures, “A house is made for that person or that person is separated from the family. Hence, I took the initiative to leave my family since people believed that leprosy was a disgrace. If you had a family member with leprosy, no one would propose to the women in the family and the proposal from the men in the family would not be accepted. That made me decide to be in this complex. I left my family.”
Cut to a pan shot of a cement-floored, one-room apartment with household items and furniture. An Indonesian girl with short black hair sits on a small bed in the left-side corner.
Cut to Qadri speaking, “After I decided to leave my family, I was looking for a village that suited me.”
Cut to a slow-motion shot of an Indonesian man walking down an alleyway with bright sunlight obscuring his face. A clothesline is on the right, a white sheet covers a parked motorcycle on the left, and a parked vehicle is on the left.
Cut to Qadri speaking with hand gestures, “I went to several villages. I am from Lerang, Bone District. I went to some places in Pare-Pare City and some other villages. Those places, however, did not offer job opportunities that I felt were suitable, as there was only farming and making red bricks there.”
Cut to an Indonesian man, wearing a brown baseball cap, riding a motorcycle attached to a food cart around a corner. A canal and houses with rusted corrugated metal roofs are in the background. Qadri’s voiceover continues, “With hands like mine, working to make red bricks, they would end up ruining the bricks.”
Cut to Qadri speaking with hand gestures, “Now I’m finally at Jongaya here, I got a job as a parking attendant. That made me interested to stay here in Jongaya.”
Cut to vehicles and motorcyclists moving by a low bridge over a littered canal. A parked pick-up truck and minivan face each other on the street. An Indonesian woman wearing a blue hijab walks by the canal.
Cut to Qadri speaking with hand gestures, “When I was here at the beginning, there were those that required much focus, there were many of them. There were 500 experiencing leprosy and suffering from organ damage or disability like me, there were many like that.”
Cut to a pan shot of a cemetery with cement headstones. Few parked motorcycles are by the cemetery, surrounded by trees. Qadri’s voiceover says, “But as time goes, the elderly passed away, the ones with disability did, too.”
Cut to a close-up, tilt shot of inscriptions on two gray headstones that say, “CANHOWAY RABU-22-11-2000,” and “JAP YON LIEN 27-10-72” respectively. Qadri’s voiceover continues, “So, what we see now is the percentage with organ damage or disability is already quite small.”
Cut to Qadri speaking with hand gestures, “If I’m not mistaken, there are around 200 who experience organ damage like I do. But the number who have experienced leprosy is still high there are around 450 people. But, compared to the population here, it’s a small number. There are already 1300 people here.”
Cut to a blue-and-yellow food cart driving down a dirt street and an Indonesian man with short black hair walking behind the food cart. Parked motorcycles are in the left foreground, and house plants lay on the dirt street in the background. A motorcyclist carrying a passenger moves by the street corner in the foreground, and a bell rings off-camera. Qadri’s voiceover continues, “People are not yet given the right information about this disease. That’s why many people who experience leprosy tend to hide themselves.”
Cut to Qadri speaking with hand gestures, “When one experiences leprosy, that person hides, not getting treatment, so that person is very likely to infect others.”
Cut to an Indonesian woman and a child sitting in an alleyway beside a house. Above them and in front of them are two filled clotheslines. Two Indonesian children walk towards the two sitting down.
Cut to Qadri speaking with hand gestures, “Common people identify leprosy like this, saying leprosy means curly fingers, shortened fingers, a body full of wounds, legs full of wounds, monster faces, etc., etc.”
Cut to a pan shot of a canal lined by small houses with rusted corrugated metal roofs. Qadri’s voiceover continues, “That is nothing but misunderstanding, as leprosy is actually a very simple disease.”
Cut to Qadri speaking with hand gestures, “It is indeed contagious, but it’s also the most difficult to spread.”
Cut to a close-up photo of leprosy scars on a person’s right shoulder.
Cut to Qadri speaking with hand gestures, “Leprosy actually starts from patches on your skin as well as some numbness. That’s the start. But as the patches are not itchy or something like that, many people ignore these patches, they don’t care, with the bacteria found behind these patches, the ones that eat away the existing nerves.”
Cut to a tilt shot of a rusty bicycle sitting on top of a small house with a rusted corrugated metal roof. A telephone pole with many wires from nearby houses cuts through the small house’s roof. Red bricks, two white plastic chairs, and other items surround the house outside.
Cut to Qadri speaking with hand gestures, “I’m here, face to face with everyone here. If my bacteria were still active, surely they would have infected my friends.”
Cut to a pan shot from a window of a small room with three wooden beds. Several garments lay on top of each bed. Qadri’s voiceover continues, “How many in the room are infected? But, who can catch it? That chance is very small. First, there has to be more exposure, that’s how the public can really understand this disease.”
Cut to Qadri speaking with hand gestures.
Cut to a motorcyclist and an Indonesian woman passenger, wearing a blue hijab, entering Jongaya Village. A second motorcyclist with a passenger and a trunk filled with water jugs enters the village. Quadri’s voiceover continues, “That’s the first thing, to realize what it is.”
Cut to Qadri speaking with hand gestures, “To reduce problems with this disease, that’s the most important thing. Then involve those who have experienced leprosy. If they don’t want to, we demand them to be involved and testify, to create public awareness that there’s nothing to fear from this disease, that this can be fully cured.”
Fade to black text with a yellow border on a black screen that says, “Copyright – @2022 HWDI. All rights reserved.”
Fade to black text with a yellow border on a black screen that says, “Made with support from the Disability Justice Project and Disability Rights Fund.” The Disability Justice Project logo is a large yellow “D” with a black play button in the middle to signify video storytelling, and white text says “Disability Justice Project” on the bottom left. The Disability Rights Fund logo – a white box with black text that says, “Disability Rights Fund” – is on the bottom right of the screen.
About this video A Different Way of Learning
2022 DJP Fellow Naufal Asy-Syaddad speaks with two Indonesian men with autism about the obstacles they've faced throughout their education and search for employment. *Audio descriptions for blind and low-vision audiences.
Filmmaker: Naufal Asy-Syaddad
Naufal Asy-Syaddad is a disability rights activist with autism and chairperson of Yogasmara Foundation's youth group. Read more about Naufal Asy-Syaddad
Transcript for A Different Way of Learning
The video starts with soft piano music and a black, white, and yellow animated screen. Yellow text on a black screen says, “Naufal Asy-Syaddad / DJP Fellow from Indonesia.” Naufal Asy-Syaddad’s voiceover says, “Hello, friends.”
Cut to a circular black and yellow animated screen. Yellow text on a black screen says, “Obstacles in obtaining employment opportunities for people with autism.” Asy-Syaddad’s voiceover continues, “Introducing, my name is Naufal Asy Syaddad, DJP fellow from Indonesia. I will raise the theme of obstacles in obtaining employment opportunities for people with autism. As people with autism, they still experience many misunderstandings, so when they grow up and it’s time to find a job, this has its own difficulties. We have two interviewees, Husein and Faisal. They will tell us about their efforts in getting the job they want.”
Cut to a black and yellow animated screen. Black text on a yellow screen says, “Muhammad Atarriq / Husein Muhammad Faisal Hakim.” Cut to a pan shot of M. Attariq Husein, an Indonesian man and musician with autism, wearing a red shirt and speaking with students in a music classroom. In the background, a young Indonesian boy wearing eyeglasses and a black shirt plays the keyboard. An Indonesian man wearing a blue face mask, eyeglasses, and mustard-patterned shirt watches the student playing the keyboard. A whiteboard and a plum-colored wall are behind them. On the right, an Indonesian man sits at a desk, wearing a white face mask and a green-and-red patterned shirt.
Cut to Husein speaking to a young Indonesian girl wearing a white hijab. The Indonesian man wearing a blue face mask and a mustard-patterned shirt joins their conversation. In the background, a young Indonesian boy sits on the ground on the left, and another boy opens the classroom door.
Cut to Husein, wearing a black-and-red shirt with white text and a picture of people on it, sitting on a brown two-seater couch in a room. A beige wall is in the background. Asy-Syaddad, a young Indonesian man wearing eyeglasses, white pants, and a light green shirt, joins Husein on the couch. Asy-Syaddad speaks to the camera, “I am currently with Muhammad Atarriq Husein. Well, he is a person with autism who was born on January 26, 2000. So he’s already 22 years old. Well, he has a talent in music.”
Cut to Husein singing into a microphone in the music classroom. A whiteboard, microphone stand, amplifier, speaker, and other classroom items are in the background. Asy-Syaddad’s voiceover continues, “And he has many achievements in the field of music.”
Cut to Husein and Asy-Syaddad sitting on the brown two-seater couch. Husein speaks to the camera, “Of course, there is, the obstacle that is not just about majoring in music. I just don’t know… what is it… When I was in school, I wasn’t taught about musical notes, I learn all by myself. Learning by myself, according to my ability, learning it individually. In a real college, as I was told by my teacher Mr. Harsono, ‘You won’t be able to study there.’” The soft piano music fades out.
Cut to Husein drumming on a black drum set in the corner of the music classroom, in front of a plum-colored wall. A bass guitar, amplifier, and a black speaker are on the right. Someone sings with the music off-camera. Husein’s voiceover continues, “‘How is it that you won’t be able to. You will be asked the formula, asked about musical notes.’”
Cut to Husein and Asy-Syaddad sitting on the brown couch. Husein says, “‘You’ll be asked about musical writing, picture,’ things that we actually don’t study. We don’t have those facilities, either at public school to learn that or back to junior high school first. If studies mean going back there, I don’t want to. There are also obstacles in attending lectures, because right now, it’s only for those who are with hearing impairment, the blind, and with physical disability. Regardless of their physical conditions, their brain is [non-disabled]. While those with autism and psychological disabilities, despite having a [non-disabled] body, like you, they have different [learning needs]. You know, that’s very unfortunate.” The soft piano music plays again.
Cut to Husein playing drums in a music classroom. Husein’s voiceover continues, “In Indonesia, those are the only accommodations. I have my own obstacles, that’s why I don’t want to go to college anymore.”
Cut to Husein and Asy-Syaddad sitting on the brown sofa. Asy-Syaddad, turning to Husein, asks “Do you study music?” Husein replies, “No. Yes because. There are obstacles. Not an obstacle, more precisely I don’t know what a block note is, I don’t know what that is. It must be asked too, the name of the formula, for example in math, it is also asked too.”
Cut to Muhammad Faisal Hakim, an Indonesian man and entrepreneur with autism, squatting on a tile floor, wiping a hard-boiled egg in a purple plastic bowl with a yellow cloth. He is wearing a turquoise shirt, a red-and-white apron, a transparent plastic glove on his right hand, and black pants. A light blue plastic bowl is to the left of the purple plastic bowl, and a plastic tub with a red lid and white label, containing liquid and boiled eggs, is to the right. In the background, a phone and a black bag are lying on a gray and brown sofa.
Cut to Faisal, his mother, an Indonesian woman wearing a red hijab and glasses, sitting on a white-brown coach with Asy-Syaddad. Faisal sits on the left and wears a turquoise shirt with a design and text that reads, “Thailand,” in the center. Faisal’s mother sits in the center and Ash-Syaddad sits on the right, wearing a light green shirt and sunglasses. Asy-Syaddad says to the camera, “Right now I’m with Budhe Sri Murni and Faisal. Now Faisal is also a person with autism who is 25 years old, right?” Faisal’s mother says, “Six.” Asy-Syaddad continues, “26 years old yes, he has turned 26 years old, now he is a person with autism who is an entrepreneur.”
Cut to Faisal squatting on the tile floor. He finishes cleaning a hard-boiled egg in a purple plastic bowl with a yellow cloth. He transfers the egg to the light blue plastic bowl on the left. Faisal’s mother’s voice says, “For the obstacles, there is still a lot of Naufal, there maybe he can’t follow the instructions from his principal.”
Cut to Faisal, his mother, and Ash-Syaddad sitting in the room. Faisal’s mother is speaking to Asy-Syaddad with hand gestures, “What to do, what to do after this, this, this, this, Faisal has no idea, like that.”
Cut to zoom in on Faisal wearing plastic gloves and grinding garlic cloves using a mortar and pestle on a white tiled floor. A white bathtub is to the left, and two colorful kitchen towels are lying to the right. Faisal’s mother’s voiceover continues, “But, as a parent when Faisal was before he went there, I was already, what yes.”
Cut to Faisal, his mother, and Ash-Shaddad. Faisal’s mother speaks with hand gestures, “Making sure that at home there is something that he has to do, which is making salted eggs.”
Cut to a close-up shot of Faisal who continues to clean the boiled egg. He places another egg in a light blue plastic bowl.
Cut to Faisal, his mother, and Ash-Syaddad. Faisal’s mother speaks with hand gestures, “Never. I used to go to Bandeng Juwono, it was at the suggestion of Mrs. Ema, Emanuella,
you know her there.”
Cut to a close-up shot of Faisal who finishes scrubbing the last egg and turns to pick up the mortar and pestle on the left. A bowl of rice and another bowl of red chili peppers, garlic cloves and ginger thumbs sit between the mortar and plastic bowl. Faisal’s mother’s voice continues, “And Faisal has also taken tests, psychological tests, this test.”
Cut to Faisal, Ash-Shaddad. Faisal’s mother speaks with hand gestures, “It turns out that even from there, there are some who accept, but there are certain parts that don’t want to accept.
accept.”
Cut to Faisal scooping the crushed chilies out of his mortar with a pink and cream colored vegetable spoon and mixing them into a plastic tub on the left. The tub is filled with liquid, and a white label is also on it. Faisal’s mother’s voiceover continues, “Because of what, Faisal is already a child who has started to be irregular in, for example, praying. If you work at erlina’s in bandeng juwono, you can’t pray on time.”
Cut to Faisal’s eggs wrapped in a plastic bag, immersed in a plastic tub with a white label. Faisal’s mother’s voiceover continues, “Even though there are many people buying here, like that. I’m afraid that Faisal will meet a lot of people there, with the voices of people coming out, which maybe Faisal hasn’t… yet.”
Cut to Faisal, his mother, and Asy-Syaddad. Faisal’s mother speaks with hand gestures, “Mudeng and later carried away finally from there, it looks like Faisal is working at home alone. Alhamdulillah, I’m very happy.” The soft piano music fades out.
Cut to Faisal sitting cross-legged on the floor, holding a plastic carton of finished eggs. A label on the carton reads, “Mas Faizal,” in Indonesian. Band music plays and someone sings along off-camera.
Cut to Hussein playing the drums in a music classroom. As the song ends, he puts down his drumsticks. People clap and cheer in Bahasa Indonesia off-camera.
Fade to black text with a yellow border on a black screen that reads, “Copyright – @2022 Yogasmara Foundation. All rights reserved.”
Fade to black text with a yellow border on a black screen that reads, “Made with the support of the Disability Justice Project and the Disability Rights Fund.” The Disability Justice Project logo is a large yellow “D” with a black play button in the center to indicate video storytelling, and white text that says “Disability Justice Project” in the bottom left. The Disability Rights Fund logo – a white square with black text that reads, “Disability Rights Fund” – is at the bottom right of the screen.
About this video ‘The Door is Open’
Indonesians with disabilities have faced barriers to involvement in elections. Ariani Soekanwo is changing that. *Audio descriptions for blind and low-vision audiences.
Filmmaker: Mahretta Maha
Mahretta Maha is a disability rights activist living with blindness. She is a program officer at the Association for Disability Access Elections (PPUAD) for the National Coalition of Organizations with Disabilities. Read more about Mahretta Maha
Transcript for ‘The Door is Open’
The video starts with Ariani Soekanwo, a 76-year-old Indonesian woman with low vision, wearing an orange hijab with a silver brooch, and red lipstick. Soekanwo is the founder of PPUA Disabilitas (Center for Election Access of Citizens with Disabilities). Four picture frames, including persons with disabilities at voting booths, are hung on a wall behind her. Urgent keyboard music with strings plays in the background throughout the duration of the video. Soekanwo, speaking in Bahasa Indonesia, says, “My name is Ariani Soekanwo.”
Cut to Ariani Soekanwo speaking into a microphone at a meeting. She is wearing a yellow hijab, a yellow blouse with multi-colored designs, and red lipstick. A beige wall is in the background.
Cut to Soekanwo speaking in front of the picture frames. “I’ve been involved in the disability movement since I was a college student.”
Cut to the PPUA logo on a white screen. The PPUA logo is a blue ballot box with blue text that says, “PUSAT PEMILU AKSES DIABILITAS” (Disability Access Election Center). Four accessibility icons are at the bottom of the box.
Cut to Soekanwo speaking in front of the picture frames. “The Center for Election Access of Citizens with Disabilities (PPUA) was established on April 24, 2002.”
Cut to a black text on a yellow screen that says, “Until the 1990s, Indonesian Election Law prohibited persons with disabilities from running for parliament, and voting places were often inaccessible to voters with disabilities.”
Cut to Soekanwo speaking, “Before the PPUA, the general election law was very discriminatory against people with disabilities.”
Cut to a photo of various people outside. A man, wearing glasses and a red shirt with blue designs, lifts a woman in a wheelchair up. The woman with a disability is wearing a blue button-down shirt and has neck-length black hair. A second man wearing a white shirt with blue designs and blue jeans lifts the front part of the wheelchair up.
Cut to a photo of a woman wearing black glasses and a red shirt. She reaches her left hand up to put a ballot in a white ballot box. Black letters that say “KPU” are on the ballot box. A woman with short black hair, wearing a blue-and-white checkered shirt, is in the background
Soekanwo’s voiceover continues, “In exercising the rights to vote, to be elected, and to be election organizers.” Cut to a photo of two men at a desk covered in a pink tablecloth. The table is stacked with ballots with blue, red, green, and yellow rectangles at the top of them. One man at the desk is standing up. He is wearing glasses and a light blue shirt with blue designs. A white sheet of paper with black text attached to a white string is around his neck. A turquoise plastic chair is behind him. The man standing up gives another man with no arms a ballot with a yellow border at the top. The man with no arms grabs the front end of the ballot with his mouth. Another man, wearing a green shirt with black designs stands to the left of the man with no arms. A third man seated at the table is wearing a beige and brown shirt and is writing on a ballot, on the right side of the photo. A door in the background with a white sheet of paper on it says, “KELUAR” (Go out).
Cut to Soekanwo speaking, “After about 15 years of PPUA’s struggle, people with disabilities currently have the right to vote.” Cut to a personal assistant helping a woman who is blind cast a ballot in a white ballot box that says “KPU” in black text. The woman is wearing a brown hijab, black sunglasses, and a purple blouse. The personal assistant is wearing a white shirt, a white taqiyah, and an orange lanyard around his neck. A second man near the personal assistant and the woman who is blind is wearing a white shirt and an orange lanyard, too. People are standing and seated behind them. Some are taking photos, and others are shooting video footage. Camera flashes go off in the background.
Cut to Soekanwo speaking, “Directly, publicly, freely, confidentially, honestly, and fairly.”
Cut to a man with a physical disability who uses crutches as he moved around a voting place with a ballot with a red rectangle at the top in his hand. Some people are seated at a green desk, some are standing up, and others are taking photos or video footage. Camera flashes go off in the background. The man with a physical disability is wearing a black shirt and pants. He passes by multiple ballot boxes resting on a brown table.
Cut to Soekanwo speaking, “They have also been able to get the right to be elected as a member of parliament and also to be governor and president as well as mayor.” Cut to pan shot of a white Indonesian parliament building with yellow text on the right exterior that says, “MAJELIS PERMUSYAWARATAN RAKYAT/ DEWAN PERWAKILAN RAKYAT/ DEWAN PERWAKILAN DAERAH” (Public Assembly/ Council of People’s Representatives/ Regional Representative Council). There is an orange design on the left wall of the right exterior. Cars are parked by the building. A long pool with a sculpture is to the left of the building and the parking lot, too. There are other several buildings in the background.
Cut to Soekanwo speaking, “And the opportunity has opened up to become election organizer members, members of Bawaslu and KPU.” Cut to a close-up of black text on a white surface that says “KPU.” A few people, election workers sorting ballots, stand together in the blurred background.
Cut to Soekanwo speaking, “So now young people with disabilities want to be active in understanding democracy.”
Cut to a woman in a wheelchair. She is wearing a purple hijab and a black shirt and is folding her ballot at a voting booth. A semi-opened ballot box that says, “KPU,” in black text is on a green table covered in a multi-colored tablecloth. Camera flashes go off in the background.
Cut to Soekanwo speaking, “And can participate in exercising their right to vote.”
Cut to a man posing for photos at a voting place. He is holding his left pinky finger up; the tip of his finger is covered in black ink. He is wearing a black shirt with brown designs over a white collared shirt. Another man with a physical disability is holding ballots behind him. A man wearing a white shirt, beige pants, and an orange lanyard around his neck, motions the man with a physical disability to the right. Some people are standing and others are seating at a green table with blue chairs in the background, others are taking photos or shooting video footage. People are talking and cameras flashes and clicks go off in the background.
Cut to a close-up of the man with ink on his finger posing for the cameras. He is holding various ballots. A woman wearing an orange hijab and a black shirt with brown designs is standing behind him. She is holding her phone. A “KPU” ballot box is resting on a table on the right. Several people are seated and others are walking around in the background.
Cut to Soekanwo speaking, “Because this is now open, although it is not easy yet, but the door is open so we have to be brave to enter to get involved as election organizers and parliament members.”
Cut to a slow zoom-out shot of a long pool and sculpture in front of the Indonesian parliament building. Cars are parked by the parliament building on the right. Other buildings are in the background.
Cut to an overhead shot of a person helping a man with a physical disability, who is holding crutches, dip his left pinky finger in a pot of black ink. The pot of ink is on a green table covered in a multi-colored tablecloth. He is wearing a black shirt with brown designs and a ring on his left finger. On the right, a white ballot box with black text on it that says “KPU” rests on a brown table. Camera flashes go off in the background.
Cut to another shot of the man with a physical disability, who uses crutches, moving towards a “KPU” ballot box to cast his vote. Several camera crews and photographers in the background are capturing the moment, camera flashes go off in the background.
Cut to a close-up shot of another man with a physical disability moving toward the ballot boxes on a green table covered in a multi-colored table cloth. He is wearing a black shirt with brown designs with a long-sleeve gray shirt underneath. Camera flashes go off in the background.
Cut to Soekanwo speaking, “With the full participation of people with disabilities being willing to show their existence in the election.”
Cut to four election workers gathered at a table covered in a white tablecloth and counting ballots. One woman on the far left is wearing a white blouse, a white bracelet, an orange hijab, and a black lanyard around her neck. She is standing next to large sheets of paper hung on a large white pinboard in the background A second woman on the left is wearing a white button-down shirt with a blue border, glasses, a watch, a ring on her right hand, and a black lanyard around her neck. On the right, a man wearing an orange button-down shirt with multi-colored designs is holding a ballot up. He is also wearing a black-and-white watch. A second man on the far right is wearing a white shirt and an orange cap with white text on it. He has a black lanyard around his neck. The woman on the left hands a ballot to the man on the right. Soekanwo’s voiceover continues, “Then the officials and candidates, those who will hold power, will pay attention to the fulfillment of disability rights, create programs and make budgets for disability needs.”
Cut to a close-up of two Indonesian flags on a flag pole, each with one red and one white horizontal stripe, on a pole outside. The sky outside is clear and blue. The flags blow in the wind.
Cut to Soekanwo speaking, “If we don’t show our existence, then our rights will be ignored.”
Fade to black text with a yellow border on a black screen that says, “Copyright – @2022 PPUA Disabilitas. All rights reserved.”
Fade to black text with a yellow border on a black screen that says, “Made with support from the Disability Justice Project and Disability Rights Fund.” The Disability Justice Project logo is a large yellow “D” with a black play button in the middle to signify video storytelling, and white text says “Disability Justice Project” on the bottom left. The Disability Rights Fund logo – a white box with black text that says, “Disability Rights Fund” – is on the bottom right of the screen.
About this video Denied Assistance
Indonesian social assistance policy has left many persons with disabilities without financial support. *Audio descriptions for blind and low-vision audiences.
Filmmaker: Kinanty Andini
Kinanty Andini is a freelance graphic design and digital artist. She is affiliated with the Indonesia Mental Health Association (IMHA), also known as the Association of Healthy Souls. Read more about Kinanty Andini
Transcript for Denied Assistance
The video starts with a timelapse of clouds passing over a tall white monument and a green pool with foundation sprinklers. A statue is in front of the monument. Palm trees surround the pool. High-rise buildings are in the background. Soft piano music plays throughout the video.
Cut to black text on a yellow screen that says, “Because of employment barriers, many Indonesians with disabilities have no steady income. Forced to live with family members, they are caught in a cycle of dependency. This cycle is reinforced by the Indonesian government’s policy to focus social assistance on families and not individuals.”
Cut to Yeni Rosa Damayanti, an Indonesian woman with black shoulder-length hair, sitting in an office and speaking to the camera in Bahasa Indonesia: “My name is Yeni Rosa Damayanti. The government’s social protection schemes are usually family-based.” She is chairperson of the Indonesian Mental Health Association (IMHA). Several items rest on a beige table behind Damayanti; a letter and certificate in frames, an award, and plants in a pot.
Cut to Damayanti sitting at a table outside and holding a white mug. Plants are behind her. She speaks to someone off-camera.
Cut to Damayanti speaking in the office, “So the social protection is given to families who fall into the poverty criteria.”
Cut to Damayanti speaking to an audience off-camera in an office. She is standing up and using hand gestures to communicate with her audience. She also holds a plate of food. A white sheet of paper tapped a brown door in the background contains text that says, “Kosong” (empty).
Cut to Damayanti speaking in the office, “The problem is that many people with disabilities live with their families.”
Cut to a man pushing a woman in a wheelchair. The woman in the wheelchair has black hair in a ponytail. The man’s face mask hangs on the left side of his face. Two people walk in front of the man and the woman in a wheelchair and enter a house. The man helps the woman in a wheelchair stand up. A pool is in the foreground. Damayanti’s voiceover continues, “And the families they live in are not necessarily categorized as poor.”
Cut to an aerial shot of the Indonesian parliament building, a low-rise building with a curved light green roof. Several high-rise buildings and trees are in the background. People are at the steps leading up to the parliament building. Damayanti’s voiceover continues, “The government is expected to change its perception of social assistance, no longer aimed at only poor families but also aimed at poor individuals with a very easy criterion, individual income.”
Cut to Damayanti speaking.
Cut to a close-up, slow-motion shot of an Indonesian person counting Indonesian rupiah banknotes.
Cut to Damayanti speaking with hand gestures to an audience off-camera. A flower painting in a frame hangs on a wall, and a window is in the background.
Cut to Damayanti speaking, “Our hope is because people with disabilities have extra costs of disability that non-disabled people don’t experience, they should get an allowance, at least to cover the extra costs.”
Cut to a woman in a wheelchair wearing a pink hijab and moving by a busy sidewalk with her family. A man pushes the wheelchair, and another holds one handle of the wheelchair. Several people are talking and moving around the sidewalk and others prepare to take a group picture in the background. Most of the people on the sidewalk are wearing face masks. Damayanti’s voiceover continues, “So there should be disability benefits provided to all persons with disabilities.”
Cut to Damayanti speaking, “Irrespective of their economic condition.”
Cut to a pan shot of a dimly lit living room with a brown couch, white-and-gray window curtains, and a picture frame on a wall. Cut to Bambang’s distorted voiceover in Bahasa Indonesia: “I don’t get cash assistance at all.” Bambang is a man with a psychosocial disability who wishes to remain anonymous.
Cut to a close-up shot of Bambang’s hands. He is seated on the brown couch. He says in a distorted voice, “And for DTKS [Social Welfare Integrated Data], honestly, I really want my data to be there [to be a candidate for DTKS recipient].”
Cut to Bambang getting up from the brown couch and walking to another room on the left. There are other brown chairs around the living room area. His distorted voiceover continues, “Because it is DTKS that determines whether we get KPDJ [Jakarta Disability Card] or not.”
Cut to Bambang speaking on the brown couch.
Cut to black text on a yellow screen that says, “While Bambang doesn’t work and has no income of his own, his eligibility for social assistance is based on his family’s income, not his own. Because his mother and sister live in a larger house in a wealthier part of town, they are considered too “rich” for him to qualify for assistance.”
Fade to another yellow screen with black text that says, “This leaves Bambang dependent on others for his survival. If he lives with his family, he is denied social assistance; if he doesn’t live with his family, he will become homeless.”
Cut to a pan shot of cars and motorcycles passing by a busy street lined with homes and small shops. Few people stand on the busy street. Bambang’s distorted voiceover continues: “I think we are most entitled to get KPDJ because we are people with disabilities.”
Cut to Bambang opening his white front door, fixing his black sandals, then leaving his house. His distorted voiceover continues, “We have additional living expenses such as medicine.”
Cut to Bambang speaking in a distorted voice, “If that (KPDJ) can reach us, it will really help us as people with disabilities.”
Fade to black text with a yellow border on a black screen that says, “Copyright – @2022 IMHA. All rights reserved.”
Fade to black text with a yellow border on a black screen that says, “Made with support from the Disability Justice Project and Disability Rights Fund.” The Disability Justice Project logo is a large yellow “D” with a black play button in the middle to signify video storytelling, and white text says “Disability Justice Project” on the bottom left. The Disability Rights Fund logo – a white box with black text that says, “Disability Rights Fund” – is on the bottom right of the screen.
About this video Health Care Ensured
Indonesians with disabilities still lack equal access to healthcare. A new policy provides hope for Sustia Rini. *Audio descriptions for blind and low-vision audiences.
Filmmaker: Sri Sukarni
Sri Sukarni is chairperson of the Indonesia Association of Disabled Women (HWDI)’s branch in the province of West Nusa Tenggara. Read more about Sri Sukarni
Transcript for Health Care Ensured
The video starts with an aerial shot of a highway and a blue-and-white monument in the city of Mataram in West Lombok District, Indonesia. Audio of a car revving plays in the background. Soft piano music plays in the background, too.
Fade to black text on a yellow screen that says, “Over the last decade, Indonesia has reformed its national health insurance system to provide healthcare coverage for all Indonesians.”
Fade to black text on the same yellow screen that says, “However, Indonesians with disabilities still don’t have equal access to healthcare.”
Fade to black text on a yellow screen that says, “Sustia Rini is a 37-year-old woman with a disability and a mother of four. When she first applied for mandatory health insurance as an individual payer, she was charged $8 a month by Indonesia’s Health Care and Social Security Agency (BPJS).”
Fade to black text on a yellow screen that says, “With no steady income, she struggled to make payments.”
Fade to Sustia Rini, an Indonesian woman wearing a multi-colored hijab, standing in a room and speaking to the camera in Bahasa Indonesia: “In 2013 I made a BPJS Mandiri card by taking Class II [level of services].” A red curtain and a cabinet of office items are behind her.
Cut to the exterior of the West Lombok public health office. A parked car is at the entrance of the office. A red chair and a brown table are next to the entrance. A man walks across the office.
Cut to a sign on the exterior of the public health office that says, “BHAKTI HUSADA COOPERATIVE SECRETARIAT, WEST LOMBOK HEALTH DEPARTMENT,” in Bahasa Indonesia. A “Ministry of Health of the Republic of Indonesia” informational poster in Bahasa Indonesia is on the right.
Cut to Rini speaking in the room. “The installment was 42,000 [rupiah]. At that time, my husband and I and my third child were included in BPJS Independent.”
Cut to black text on a yellow screen that says, “Eventually, Rini stopped making payments to BPJS. Everyone in her family was healthy, so she didn’t see the need for health insurance. Then one of her children became sick, and she had no way to pay the hospital bills.”
Cut to cars passing by a tree-lined street in Mataram. A man sits on one of several brown benches on the sidewalk. A few people move by the sidewalk. Rini’s voiceover continues, “In 2015, my first child was sick and needed hospital treatment.”
Cut to Rini speaking.
Fade to black text on a yellow screen that says, “Rini applied for free health care known as PBI. She was denied for several reasons.”
Cut to Rini speaking, “The Mataram City Health Office explained that for 2015, there was no program from PBI in the Mataram City area.”
Cut to a pan shot of Rini walking towards the front entrance of the Regional Health Laboratory. She is wearing a black hijab. Several cars and motorcycles are parked next to the laboratory.
Fade to black text on a yellow screen that says, “Because Rini had stopped making payments to BPJS as an individual payer, she also owed the government money. She was told that until she paid off her debt, she would not be eligible for PBI.”
Fade to black text on a yellow screen that says, “In June, the Disability Justice Project visited the West Lombok District Health Office, where Nurse H. Zuljipli, secretary of the West Lombok District Health Office, explained that Rini was mistaken.” Soft piano music transitions to upbeat piano music for the rest of the video.
Fade to black text on a yellow screen that says, “The Health Office had changed its policy in 2020. Now anyone who needs free healthcare can receive it whether they owe money or not.”
Cut to a black-and-brown sign on the side of a busy street. The sign says, “WEST LOMBOK DISTRICT GOVERNMENT / DISTRICT HEALTH OFFICE. WEST LOMBOK” in Bahasa Indonesia.
Cut to the exterior of the West Lombok public health office. A red chair and a brown table are at the entrance. Two people are seated at a reception desk.
Cut to Nurse H. Zuljipli, an Indonesian man, sitting in an office and speaking to the camera in Bahasa Indonesia: “To answer your question earlier related to the BPJS PBI program in West Lombok, it is a form of presence and support for the people of West Lombok.” A brown cabinet stacked with papers and binders is in the background.
Cut to four men and four women meeting around a long brown table at the West Lombok health office. The women are wearing hijabs.
Cut to Zuljipli speaking in the office, “It is recorded that she has a lot of debts and unable to pay them, but when she is sick, needs financing, needs service, she is accommodated. She can be transferred [into PBI free healthcare] her status does not require her to pay the debts first, but still being considered as debts [owed to the government].”
Cut to a “Ministry of Health of the Republic of Indonesia” informational poster in Bahasa Indonesia at a health office.
Cut to a sign on the exterior of a health office that says, “FIELD OF HEALTH RESOURCES” in Bahasa Indonesia.
Cut to Zuljipli speaking, “This is when the regulation came to allow it, we have done that since 2020. People who used to be independent [payers], although having debts due to not paying the premiums, we can still serve them.”
Cut to Rini walking up to a woman wearing a white hijab at the West Lombok public health office’s reception desk. She sits down on a chair. A man at the reception desk occupies another chair.
Fade to black text on a yellow screen that says, “Now Rini and other West Lombok citizens are in the process of applying for free health care.”
Cut to Rini smiling and speaking to the camera, “I am very happy because I can make BPJS PBI without paying arrears.” Rini’s black hair is in a pulled-back hairstyle.
Fade to black text with a yellow border on a black screen that says, “Copyright – @2022 HWDI. All rights reserved.”
Fade to black text with a yellow border on a black screen that says, “Made with support from the Disability Justice Project and Disability Rights Fund.” The Disability Justice Project logo is a large yellow “D” with a black play button in the middle to signify video storytelling, and white text says “Disability Justice Project” on the bottom left. The Disability Rights Fund logo – a white box with black text that says, “Disability Rights Fund” – is on the bottom right of the screen.
About this video Inclusion 101
Students with DeafBlindness face education barriers in Nigeria. *Audio descriptions for blind and low-vision audiences.
Filmmaker: Oluwabukolami Omolara Badmus
Oluwabukolami Omolara Badumus is a disability rights activist and feminist based in Lagos, Nigeria. She is both the financial secretary and Lagos state coordinator for the Lionheart Ability Leaders International Foundation (LALIF). Read more about Oluwabukolami Omolara Badmus
Transcript for Inclusion 101
The video starts with a yellow screen with a title card in a black font that says, “Miracle Balogun is 17 years old. He was born Deaf and with low vision. He has struggled in mainstream schools because of a lack of accessible learning materials and a lack of teachers trained in communicating with DeadBlind students.” Melancholy guitar instrumental plays.
Another title card fades in: “His mother did not wish to appear on camera.” Voiceover of a woman, Miracle Balogun’s mother, says, “His education has been eclectic.” Melancholy guitar instrumental volume decreases.
Cut to an adolescent boy wearing a blue, white, black, and turquoise shirt. He is Miracle Balogun. He is standing in front of a room with a sign that says “LIBRARY” above the door. The building walls are painted pink. He is smiling. He proceeds to hold an index finger up. Voiceover of Balogun’s mother continues, “Most schools, they don’t understand him. I’ll put it that way.”
Cut to Balogun standing with a woman in a black and beige dress. He is wearing black sandals. They are conversing in sign language. There is grass to the right. An adolescent boy steps out of a room behind them, past a black gated door. Voiceover Balogun’s mother continues, “Or, they lack the ability to cope with such a child. I don’t know how to….”
Cut to Balogun drinking from a big bottle of water. He turns his head and looks to the right. Voiceover of his mother continues, “Because he has been in one class for six years. Ever since we put him in the school, they refuse to promote him.”
Cut to Balogun resting his hand on a pink wall with the other hand behind his back. There is a brown bench to the left and windows to the right. Voiceover of his mother says, “I now took it upon myself to start teaching him on my own.”
Cut to a yellow screen with a title card in a black font that says, “Article 24 of the Convention on the Rights of Persons with Disabilities, which Nigeria ratified in 2010, and UN Sustainable Development Goals 4 and 10 guarantee equal opportunities for all learners, including those with disabilities.” Melancholy guitar instrumental volume increases. Another title card fades in, “However, students with DeafBlindness in Nigeria are deprived of these fundamental rights, forcing many to drop out of school or to enroll in residential programs.”
Cut to a man wearing a lime green button-down shirt and black tie. He has a pair of headphones around his neck. He is conversing in sign language with a woman wearing a white shirt with blue, red, and yellow designs. She is wearing a watch. The man is holding the woman’s hands. They are standing in front of a black gate with its pedestrian door open.
Cut to the same man. In this shot, he is wearing a dark blue button-down shirt and a black tie. There is a laptop on a table to the right. He is seated on an orange chair in front of a large cabinet full of notepads and other stationery items. The cabinet and the wall behind him are painted pink. His name and title appear on screen: “Solomon Olakunle Okelola, Executive Director, LALIF [Lionheart Ability Leaders International Foundation]” Okelola says, “The major challenge which individuals with DeadBlindness face in Nigeria arise as a result of their inability to communicate and socialize with people.”
Cut to a close-up of Okelola conversing with a woman in sign language. Cut to Okelola saying, “Teachers in most schools do not know there are ways they can teach and that they can communicate with people with DeafBlindness.” Cut to Okelola conversing with a woman in American Sign Language and English, “International Commission for Persons with…” Cut to Okelola saying, “In the recent survey, we just concluded here in Lagos State, most individuals with DeadBlindness are out of school.” His black belt and black trousers are seen in the frame.
Cut to a close-up of Miracle Balogun with his back leaning against a pink wall. He turns his head to the left. Okelola continues, “And unable to access education. The few of them who manage to attend school cannot easily access learning like their counterparts.”
Cut to a close-up of a person reading Braille from a book. Cut to Okelola saying, “The educational needs of individuals with DeafBlindness are not being provided for by the government in terms of policy-making and by the teachers in terms of implementation of teaching, learning, activity, that can meet the unique need of this individual.” Cut to Miracle Balogun signing to the camera.
Cut to a woman wearing a white and pink dress. She has on a light gray head wrap and gold hoop earrings. She is conversing with someone off-screen. A person off-screen says, “He cannot hear, yes.” To the right is an adolescent boy wearing a green and blue shirt and sitting on a yellow chair. He is Ayodeji Lawal. To the adolescent boy’s right is another man in a white and blue striped shirt. They are seated in front of a black wall.
Cut to a yellow screen with a title card in a black font that says, “Ayodeji Lawal is also DeafBlind. He is out of school after his mother discovered problems with his residential placement.” Synth instrumental starts.
Cut to close up of the same woman wearing a pink and white dress. Her name and title “Balikis Adebola Lawal, Ayodeji’s mother” appears on the screen. Lawal says, “He couldn’t walk, he couldn’t talk until he was three years. He started crawling with his chest. He couldn’t sit on his own. We support him with a pillow, this that, to make him sit up. Problems started at the early stage of his life. [Inaudible] we didn’t notice it on time.”
Cut to Balikis Adebola Lawal with her son Ayodeji Lawal who is drinking from a can. The second man in a blue and white striped shirt remains seated close to Ayodeji Lawal. “Discovered that he’s highly interested in education, so I enrolled him in a normal school, not knowing that he’s supposed to go to special school.
Cut to close up of Balikis Adebola Lawal. She says, “I met a schoolmate, Michael. That one led special education in Oyo. So he was teaching in one of the special schools.” Cut to Lawal and her son. Man in a white and blue striped shirt gets up and picks something off the floor with his other arm around Adodeji Lawal’s neck. Balikis Adebola Lawal continues, “It got into a stage, the owner of the school, the mama that owns the school doesn’t have much time. I just discovered that they didn’t care for them. To my own satisfaction.”
Cut to a yellow screen with a title card in a black font that says, “There are multiple ways to communicate with someone who is DeafBlind.”
Cut to Okelola in front of a pink cabinet and wall. He is wearing a lime green shirt and a black tie. An HP laptop is placed in front of him. Okelola says, “Sometimes sign language basically involves the use of the usual American Sign Language, the only difference being the fact that an individual with DeadBlindness read the sign with the hands instead of with the eyes, at least in the general case.”
Cut to Okelola sitting across from a woman wearing a red dress and gold earrings. Okelola is wearing a white shirt and has a pair of black headphones around his neck. The woman is interpreting something to Okelola in American Sign Language. He is holding her hands. She leans to her right to listen to audio coming from a red and black device. There are few people near them around a table and plastic chairs.
Cut to Okelola, “If an interpreter is signing, I can put my hands on the hand of the interpreter to read what he or she is signing.” Cut to Okelola in the same scene as described above. This time, he is conversing with a woman in a brown and white striped shirt. The woman wearing a red dress leans against a blue table to listen to the device once again. A third woman wearing a white shirt is seated at another table.
Cut to Okelola. He says, “Another way of communication involve the use of big, bold letterings.” Cut to a shot of an alphabet chart on a pink wall. On the left, there is a green wall and a window. Both walls have other items stuck to them. Cut to a close-up of the alphabet chart, focusing on the letters “E”, “F”, and “G” with the words and images of “eggs,” “fish,” and “grapes” near the letters, respectively.
Cut to Okelola, who says, “Individuals with DeadBlindness can also be able to learn Braille.” Cut to an adolescent girl seated on a green chair and reading Braille from a book. She is wearing a black hijab and red shirt with red, black, and white designs. Okelola continues, “There is an application that can convert speech to Braille so that a DeadBlind can make use of it the same way as a person with visual impair.” Cut to a close-up of the adolescent girl reading Braille. Synth instrumental volume increases.
Cut to a yellow screen with a title card in a black font that says, “Individuals with DeafBlindess.” The words fade out downwards. The following phrases fade in and out, respectively: “may be completely Deaf but with residual vision,” “completely blind with residual hearing,” “have low vision and residual hearing,” “or completely Deaf and completely blind.” Other phrases continue to fade in and out, respectively, “To ensure an inclusive education for students who are DeafBlind, the following steps must be taken: Government officials, policymakers, and the disability community must recognize that people who are DeafBlind have distinct needs that are different from those who are blind or Deaf.”
Title cards with transitions continue, “Laws need to be passed to protect individuals with DeafBlindness and ensure equal access to education, employment, medical care, and more.” “More data needs to be collected on the number of people living with DeafBlindness in Nigeria.” “Teachers need to learn how to communicate with students who are DeafBlind. Otherwise, these students could be cut off from one of the key pathways to fully participating in society throughout their lives.”
Fade to black and title cards highlighted in yellow on a black screen that says, “Copyright – @2022 Lionheart Ability Leaders International Foundation. All rights reserved.” Synth music fades out. Screen fades to black. Cut to Copyright- @2022. Lionheart Ability Leaders International Foundation. All rights reserved.
About this video Ending Stigma Together
Triumph Uganda and International Disability Alliance members discuss the power of community in combatting mental health stigma. *Audio descriptions for blind and low-vision audiences.
Filmmaker: Esther Suubi
Esther Suubi is an advocate for young girls and women's voices and a peer educator at Triumph Mental Health Support. Read more about Esther Suubi
Transcript for Ending Stigma Together
The video starts with gentle background music and a montage showing three Ugandan women. They are Esther Suubi, Dorothy Nakato Mubezi, and Gorret Namwanje. In the montage, Dorothy is smiling and walking through a doorway onto a porch. Gorret sits with Esther on a wood bench in a sunny yard.
Cut to an interview with Gorret sitting on a chair alone in the yard.
Gorret says, “We’ve got the witch doctors, hospitals, asking for some help, but realizing at the end it was psychosocial disability.”
Cut to Gorret and Esther walking and talking in the yard. Cut to an interview with Esther sitting in a blue chair alone in the yard.
Esther says, “I was in high school and I broke down mentally.”
Cut to Dorothy talking with another woman on the porch. Then cut to an interview with Dorothy sitting in a blue chair.
Dorothy says, “It came when I was at school, so for me I didn’t know about it until when I was brought back home.”
Cut to black words on a yellow screen that say, “Psychological disability remains one of the most challenging and misunderstood areas of disability. Discrimination in education, employment, and more deprive persons with psychosocial disabilities of their legal capacity and liberty.”
The video cuts back to Gorret’s interview. A yellow title with black words appears and reads, “Gorret Namwanje, Self Advocate at Triumph Mental Health Support.”
Gorret says, “There is an English teacher, that woman she could just end in class and maybe the sickness comes, she tells the fellow pupils to take you out. The next time say ‘Ahh, I don’t want to see you in my class so just move out. That you can’t stay now her class when you’re having a sickness.’”
Cut to Gorret and Esther talking on the bench in the yard. Then cut to Esther’s interview. A yellow title with black words appears that says, “Esther Suubi, Peer educator at Triumph Uganda Mental Health Support.”
Esther says, “It came as a shock to me, and also to my friends. I did have a lot of friends, but when I went back home and I came back to school it was like a whole new environment.”
Cut to Esther coloring in a colorful book in the yard. The image has the words, “I Am Enough” written on it.
Cut to Dorothy’s interview. A yellow title with black words appears that say, “Dorothy Nakato Mubezi, Fellow at International Disability Alliance.”
Dorothy says, “I stayed in the hospital for almost two weeks but I didn’t know what was really – I couldn’t remember what is happening.”
Cut to Dorothy braiding and styling another woman’s hair. Cut back to Dorothy’s interview.
Dorothy says, “They know that home is a challenging one. Get clothes, you can’t; there are always troubles, something like that.”
Cut to Gorret standing outside and speaking into a microphone at a conference. A caption with yellow letters reads, “Gorret raising awareness about abuse among girls with disabilities (Credit: Creative Action Institute).”
Gorret says into the microphone, “I’ve learned that we should give care, respect, and show love to persons with disabilities, especially those having psychosocial disability, mental disability, and intellectual disability.”
Cut to a montage of photos. The first is a photo of Gorret crafting with another woman. Next are two photos of Triumph Uganda Mental Health Support classes. In each photo, students sit in a circle around a teacher.
Cut to Gorett’s interview. Gorett says, “Even in our village, the nearby neighbors, they told their children to stop coming near me. That I will spread the disease to them also.”
Cut to Gorett holding a phone and standing in the yard. Esther walks into the frame. Cut to Esther’s interview.
Esther says, “It was a whole new environment for me. I had like three friends who stood by my side.”
As Esther speaks, a photograph appears showing Esther in a classroom with other students.
Cut back to Esther’s interview. Esther continues, “But these other friends that I thought were friends didn’t want to sit next to me.”
Cut to Esther coloring in a coloring book with the same image that reads, “I Am Enough.”
Cut to Dorothy’s interview. Dorothy says, “Like we go for meetings and you want to stand up and talk, somebody’s saying, they may not give you a chance quickly.”
Cut to a photo of Dorothy wearing a name tag and standing next to a bright yellow wall. Dorothy is pointing to a white sign on the wall that has colorful words. The words read, “How can we get ready to access SRHRs? Sexual Reproductive Health Rights.”
Cut back to Dorothy’s interview. Dorothy continues, “They think your contribution may not be in line with what they are discussing, which is not that true.”
Cut to Gorett and Esther walking in the yard. Then cut to Gorett’s interview.
Gorett says, “I felt very bad. Never happy. Because it hurts when they do something like that to you. I missed the lessons of English but the good thing I did it better than other subjects in my primary.”
Cut to Esther reading a book in the yard. The book is called “Mental Health Beyond Madness.”
Cut to Esther’s interview. Esther says, “Most of my friends feared me. They thought that if they just had a small connection of my skin to theirs, I would affect them, or infect them, with a illness that I’m having. It was very tough. Very tough.”
A photo appears on the screen showing Esther in a classroom smiling at the camera.
Cut to Dorothy’s interview. Dorothy says, “So you are prevented from participating in society. In many other areas. Because of the misconceptions that people have about persons with psychosocial disabilities.”
The video cuts to a montage of photos showing Triumph workshops. The first one shows a group of people smiling and posing for the camera. The second shows people sitting in a chair and listening to a speaker in a purple dress. The third shows a speaker in a yellow dress addressing a group. The third photo shows people standing outside in a circle doing a group activity.
Cut to Dorothy’s interview. Dorothy says, “The advice I have for persons with psychosocial disabilities that have been stigmatized is for them to know who they are, to know they have value and treasure what they have.”
Cut to Gorret’s interview. Gorett says, “The first thing is to pray to God. Because God hears every person’s voice and prayers. The second thing: going for medication at the hospital. Like I joined Atenekontola in Bugembe Health Center. So I just go every month for medication.”
The video cuts again to Dorothy styling the woman’s hair. Then it cuts to Dorothy’s interview.
Dorothy says, “We are supposed to show the world our potential. I advise persons with psychosocial disabilities, where possible with enough support to do their best.”
Cut to a photo of two women talking at a Triumph workshop.
Cut to Esther’s interview. Esther says, “When I got to meet the executive director who is my mentor of Triumph Mental Health Support.”
The video cuts to a photo of Robinah Alumbuya. At the bottom of the photo, a black title with yellow words reads, “Robinah Alambuya, Triumph Executive Director.” The photo shows Robinah wearing a blue outfit, kneeling on the ground, and writing on a protest sign. The video cuts to a second photo of Robinah standing with another person, smiling into the camera.
Cut back to Esther’s interview. Esther continues, “I got to realize that I am not the only person going through this. We are many.”
A photo appears of Robinah in the same blue outfit, now holding a sign that reads, “#Stop sexual abuse!”
Cut to Gorret’s interview. Gorret says, “Listening to what my parents said to me. Guiding me, counseling what I should avoid, prevent like peer groups. Even since I joined Triumph Uganda, they’ve been helping me in very many things.”
Cut to Gorret speaking at the conference again. Gorret says into the microphone, “I as Namwanje Gorrett, a Ugandan from Jinja district, from an organization called Triumph Uganda Mental Health Support, I’ve learned that we should give care, respect, and show love to persons with disabilities, especially those having psychosocial disability, mental disability, and intellectual disability.”
The video cuts again to Gorret and Esther sitting on the bench in the yard laughing together. Then it cuts to Esther’s interview.
Esther says, “So I decided that I’m going to become a voice for the voiceless so that we can speak up, you know, to tell the world that we too are human beings. Yes, we do have special needs, but we are equal. We have the same blood.”
Cut to a montage of three photos that show Esther spending time with other Triumph members. In one photo, she wears an orange shirt with the words SRHRs, which stands for Sexual Reproductive Health Rights. In another she is leaning over a table with two other people, smiling as they all write on papers. In the third, she is sitting and smiling with another woman in a red dress.
Cut to Dorothy’s interview. Dorothy says, “I advise them to take care, safe care, that when you take care of yourself, you reduce on the relapses.”
Cut to several photos of people in Triumph workshops. In the first photo, a group of people sit outside under an awning. The table is covered in Triumph Uganda banners that advocate for sexual reproductive health rights. One banner reads, “Triumph Uganda promotes Sexual Reproductive Health and Rights of Adolescent Girls and Young Women with Psycosocial Disabilities.” A second photo shows two people sitting at a table writing on protest signs.
A voice over by Gorret speaks over the photos, and then we cut to Gorret’s interview. Gorret says, “Village leaders, community leaders, and the police officers to hear the voice of persons with disabilities. Because one can be raped, takes the statement to police and they don’t follow it. Because they could just say ‘Hey, you are disabled. How can we help you?’ They should hear their voices also because they’re also human beings, like others.”
Cut to a photo of Triumph members standing in a half-circle and posing for the camera.
Cut to Esther’s interview. Esther says, “There are people out there who wish they could speak up but because they don’t have the courage, they’re not able to speak up so I said, ‘I’m going to do this for them.’”
Cut to a close up of Esther, who is standing in front of a Triumph organization sign. Esther says, “I am Suubi Esther Deborah, a Triumph self advocate and a university student.”
Cut to Dorothy’s interview. Dorothy says, “They should participate. This helps you to know your right and know how you fight for your right and advocate for others.”
Cut to a photo of a woman holding a sign that reads, “Why not affirmative action also in elections?”
Cut to Esther’s interview. Esther says, “I believe that stigma can be eradicated from our society, from our community, if we join together and fight this. Remember there is no health without mental health; my health is your health and your health is my health.”
Cut to a yellow screen with black words that say, “Together we can end stigma!”
The screen fades to black with a yellow title at the center that reads, “Copyright – @2022 TRIUMPH Uganda. All rights reserved.”
About this video Overcoming Barriers to Health Care
TASO clients and staff talk about the medical climate for people living with HIV and disability in Uganda. *Audio descriptions for blind and low-vision audiences.
Filmmaker: Nissy Namuyomba
Nissy Namuyomba is an administrative assistant at the Masaka Association of Persons with Disabilities Living with HIV/AIDs and a volunteer with the Masaka Association of Persons with Cerebral Palsy in Uganda. Read more about Nissy Namuyomba
Transcript for Overcoming Barriers to Health Care
The video begins Steven Jjemba, a man with a physical disability walking. His hands are on his feet. He is wearing a black shirt and black pants with orange designs. He has items in his shirt pocket. Melancholic piano instrumental starts.
Cut to Maria Lukundo, a woman who is blind, walking with a man. She has long black braids and is wearing a blue headband. She is wearing a white, purple, red, and brown flowery dress. She is wearing a brown coat over her dress. She is using a white cane. The man is wearing a purple shirt with a white Irish cap. They are holding hands. They are both wearing face masks under their noses. There are two women behind both of them. One of the women briskly walks by. There are some bricks and other construction materials behind Lukundo.
Cut to a man sitting in an office. His name is Edward Muwanga. He is the coordinator of psychosocial & community work at The AIDS Support Organization (TASO) in Uganda. He is wearing a purple and white striped button-down shirt. He is also wearing a blue surgical mask. There is a bulletin board behind him with multiple papers pinned to it. He says, “TASO clients, especially those with a disability, most of them are not employed.”
Cut to Jjemba sitting with a man. They are having a conversation. Both men are smiling. The man is wearing bright orange pants with neon green, red, and blue designs. He is also wearing a gray shirt. He has on a watch and a necklace. Jjemba and the man hold a black sandal. Cut to close-up of Jjemba repairing the black sandal. Muwanga’s voiceover continues, “Keeping clinic visits call for support in form of transport.” Cut to Muwanga. He is seated at a desk with papers on it. He says, “Some people are isolated from the main roads.”
Cut to drone shot of a small village in the middle of a forest. Muwanga continues, “They need to pay some money so that they can reach the treatment center, yet these people are not employed.” Cut to Muwanga. He is holding a blue pen. He continues saying, “Some of them are living without caretakers. They don’t have relatives. TASO as a clinic does not provide transport.” Cut to point-of-view shot of person driving a car around the streets of Uganda. “We only provide treatment.” Cut to Muwanga. He says, “So, people with disability find it very challenging to connect from their places of residence to the treatment center.”
Cut to white building and a parking lot full of cars. There is a white tent to the right of the building with some people standing at it. Cut to a sign of “THE AIDS SUPPORT ORGANISATION (TASO) – UGANDA” in blue font. TASO’s logo, in blue, black, and white, is to the left of the blue letters. The sign also states “HEAD OFFICE & TASO MULAGO – MULAGO HOSPITAL COMPLEX” underneath the blue letters. The overall sign is placed under a tree. The leaves on the tree are gently swaying in the wind.
Cut to a crowd of people sitting on benches. There is chatter in the background. Cut to a close-up of a Ugandan man with short hair. A person with a white and black head covering is seated next to him. “That is TASO. That poses a very big challenge,” says Muwanga.
Cut to Maria Lukundo. She is seated with an orange handbag hanging on the chair. She has on a blue face mask under her chin. Lukundo says [speaking in Luganda], “I live in Bulayi, Masaka City. I became blind in 2015, and I take ARVs that I pick up from TASO.” Cut to Maria Lukundo walking with a man wearing a purple shirt and a white Irish cap on. They both walk past a white gate and up a hill. Cut to a group in a sitting area. Each of them shifts forward to occupy an empty spot along the bench.
Cut to Lukundo. She says, “I face challenges when I’m coming from the village and thus transport is my biggest problem to move to the hospital.” Brief cut to a hallway with people seated on chairs. One man is standing. He is wearing a blue, white, and red jacket. He is also wearing light brown pants and is carrying a brown crossbody bag. He has an orange cap on. Cut to close-up shot of a woman wearing a pink shirt. There are people sitting next to her, on the left.
Cut to Jjemba. He says [speaking in Luganda], “Transport is my biggest challenge because if you don’t have money, it’s difficult to pick medicine from the hospital.” Cut to people in white coats walking past the left side of the frame. Two people are wearing white coats. One woman is wearing white and green shirt, and another is wearing a purple and gold dress.
Cut to Jjemba saying, “It’s important to get means of transport. That’s the biggest challenge, but if you get a person to lend you money, and you get it, you can pay it back.” Cut to Jjemba arranging his blue tool box.
Cut to Jjemba saying, “Right now, in my situation, during the pandemic, motorcycles were not allowed to carry passengers.” Cut to Steven Jjemba sitting with another man. They are having a conversation. Both men are smiling. The man is wearing bright orange pants with neon green, red, and blue designs. He is also wearing a gray shirt. He has on a watch and a necklace. The man hands Jjemba some cash. He picks up a pair of black sandals with minor red designs. They shake hands. Brief transition to Jjemba at his work station. “There were police officers who could stop motorcycles from taking me. I could explain to them that I am disabled, but they could not understand. Motorcycles were being stopped from carrying passengers. I could explain to them that I have to get something to eat. If I stay home, I won’t be able to eat.”
Cut to black screen with yellow words that say, “Steven is a cobbler who makes less than two to three U.S. dollars a day.”
Cut to Jjemba arranging and sharpening his tools. He continues, “Still, some could try to stop me. But still, I found some that were genuine and could understand.” Cut to close-up shot of Jjemba sharpening a tool. “One day I was tempted to go to the District Residence Commissioner. When I reached there, he said unless someone does not understand that your situation is self-explanatory, he assured me that I should continue using motorcycles: ‘In case you get arrested, refer back to me.’” Cut to Jjemba pounding something with a small hammer. There is a person in beige pants, light green shirt, and black and white Nike slippers seated next to him
Cut to Jjemba interacting with the same man wearing beige pants, light green shirt with white words on it, and a white hat. Jjemba continues, “He could understand, but I kindly request the government to sensitize its workers about the requirements of people with special needs, as our disability is visible.”
Cut to a reception area full of women. There are two women at the reception desk. Cut to close-up of one receptionist wearing a brown blouse and a white hijab. She is sorting some papers on a desk while holding a pen. The second receptionist, in a white shirt, appears to give directions to a guest.
Cut to close-up shot of a person using a black pen to fill out a form. There is an orange folder next to them, on a table. Edward Muwanga voiceover says, “We make follow-ups.”
Cut to a poster of the Ugandan flag and a U.S. flag joined together with a big red ribbon on a door. The words “President’s Emergency Plan for AIDS Relief” are underneath the flag in black font. There is another door to the right with a sign that says, “PLEASE USE NEXT DOOR 102.” Edward Muwanga says, “We term that as-home care where we visit patients with special needs.”
Cut to Edward Muwanga speaking. He is seated on a black chair. There is a red, purple, and white curtain behind him. “We come back on at-home care where we visit patients with special needs. At their homes. And, the major purpose of doing this, one is to give them home-based treatment. We can choose to treat them from home. Secondly, to assess the home environment,” says Muwanga.
Cut to close-up of Maria Lukundo. Muwanga voiceover continues, “We’re looking at hygiene – who is providing the basic needs. Yes, we look at the community support.” Cut to Lukundo walking with a man. She is wearing a brown coat over her dress. The man is wearing a purple shirt with a white Irish cap. They are holding hands. They are both wearing face masks under their noses. There are two women behind both. There are some bricks and other construction materials behind Lukundo.
Cut to Muwanga. He says, “First of all, give them empowerment counseling. We make them realize the opportunities around them. We make them realize the resources that they may take to their advantage.”
Cut to a man in a white coat. He is wearing a gray button-down shirt and black pants. He examines a woman’s arm with a pair of white disposable gloves on. The patient is wearing a white dress with black designs. There is medical equipment behind the man. Cut to a close-up of the medical professional. He briefly looks to the left. Cut to a close-up of another patient. She has blue earrings on. Cut to a close-up of the medical professional injecting a needle in the patient’s skin.
Another cut to a woman wearing a dark brown shirt with the sleeves rolled up. She presses a cotton swab on an injection site on her arm. She has short hair and is wearing blue earrings. “We provide them with adherence counseling concerned with how best can they take the treatment and how can this treatment be of help to you,” says Muwanga.
Cut to Maria Lukundo holding a book. There is a yellow box with black words on it that say, “A book showing how a patient can best use their ARVs and when they are expected to report back for further medical checkups.”
Cut to Edward Muwanga saying, “We go ahead to provide family counseling.” Cut to two women speaking to each other on a bench outside. There is foliage and grass behind them. One woman’s back is turned back to the camera; she has reddish brown braids tied in a ponytail and is wearing a green shirt with another lace black shirt over it. She has on gold hoop earrings. The woman she is speaking to has on a black shirt with a black and white shirt over it. She has short black hair. Cut to close-up of a woman with short hair speaking to a woman with braids. Muwanga says, “Because we have had cases of discrimination, family members can choose to neglect that person.”
Cut to Muwanga explaining, “So there, TASO… intervenes and talk to the family members, making them realize the value, the worth, of this person living with HIV and disability.” Cut to a close-up of the woman with the white and black shirt making hand gestures. Cut to the two women speaking to each other on a bench. There is a covered walkway behind them.
Cut to Muwanga saying, “Instances where people with disability have been abandoned, we talk to the family members, and we see how we can reunite them.”
Cut to Maria Lukundo walking with a man wearing a purple shirt and a white Irish cap on. They both walk past a white gate. Muwanga says, “We talk to the family members, and we see how we can reunite them.” Cut to Muwanga. “So, that kind of family counseling, to the families, where we have a person on treatment, and this person is living with HIV is very much emphasized. That family counseling.” Cut to close-up of Muwanga at his desk. He is looking downward. “We provide HIV preventive counseling to the people with disability so that they don’t get HIV,” he says. “Because the person with a disability has a right to enjoy the sexual rights, have sexual partners, you know?”
Cut to close up of Lukundo holding two white pill bottles of ARV drugs. There are black words written on the pill bottles. She is seated on her brown coat on a red and white mat. Her orange handbag is next to her. There is a yellow box with black words that say, “A client holding ARV drugs.”
Cut to two people sitting at a table. Papers are hanging on light blue walls around the room. Two men with white coats are in the room. One of them walks across the room. Melancholic piano instrumental transitions to melancholic guitar instrumental.
Cut to four men and one woman standing near each other. They are all wearing white coats except for one man in a yellow shirt. The woman is holding a green pen. Some of them smile and laugh in conversation.
Cut to Steven Jjemba saying [in Luganda], “First of all, most especially those people in the government positions, they have to consider that people with disabilities are like other people.”
Cut to a dimly lit reception area. Two people are seated behind a desk while one woman with a white shirt on stands at the desk with her hands resting on her face. The woman’s arm is resting on the reception desk. A security guard in a blue uniform and hat walks past the reception desk.
Cut to Jjemba. He say, “Because in case someone goes to the hospital and explains to the officials that I have a disability, I kindly request that they should allow me to use the motorcycle to receive my medication.”
Cut to a point-of-view shot of a person as a passenger on a motorcycle ride. The sun is setting.
Cut to Jjemba. He says, “And I leave as early as I can to do other things, as it’s not allowed and yet you have requested them and he can visibly see it.” Cut to a room with hospital beds. People are occupying the beds on the left side of the frame. There are blue mosquito nets above the beds. A man with a white coat on walks down the room and past the frame. He has a black stethoscope around his neck and is wearing a red and white button-down shirt with black pants. He has a small white book in his hands.
Cut to close up of Jjemba walking. Cut to Jjemba speaking [in Luganda], “As our disability can’t be hidden but you request them and they instantly refuse but honestly can see it.”
Cut to the outside of a white and light blue building. One van is parked on the left. A blue car on the right drives off. Two men walk in opposite directions.
Cut to Edward Muwanga. There is a brown shelf to the left stacked with black binders with white labels on them. Underneath the shelf is a brown cabinet with a blue plastic water bottle and other items. There is a calendar behind Muwanga and a brown door to the right. He says, “Once a person living with HIV and a person is having a disability, once confirmed HIV positive, it is important that you accept the serostatus status: ‘I am HIV positive.’ Yes, you accept and look at the way forward.”
Cut to Lukundo standing in front of construction materials outside. There is a woman in what appears to be a blue and white dress behind her. Brief transition to Jjemba smiling. Muwanga says, “Because after accepting, you can make good treatment plan. But if you deny the test results, you cannot come up and make good treatment plan.”
Cut to a woman with a pink blouse and a white coat on. Her hair is in a high bun. She is assembling medication. There is another person wearing a white coat to her left. They are doing the same thing. Brief transition of a close-up of someone sorting pills with a gold-colored tool.
Cut to a man wearing a white coat speaking with a woman in a red and white shirt at a kiosk. There is a person wearing a black-and-red shirt with black pants, waiting behind her. The man hands the woman at the front of the kiosk a piece of paper.
Cut to Edward Muwanga saying, “And work with a support team, work with a team of counselors, work with a team of peer educators.” Cut to a room full of people conversing with one another at a table. There is a stethoscope and papers on the table. “Make a plan for the positive living: ‘How do I live with HIV and disability?’” Cut to Muwanga saying, “Of course, life will go on, as somebody’s on treatment.”
Cut to black screen with a title card in a yellow font that says, “It’s important to note that we are all potential victims of disabilities through diseases like HIV, accidents, wars, and natural calamities. Creating an inclusive environment for people with disabilities makes accessibility easier for other people and prepares for those incoming uncertainties. Let us work on not leaving anyone behind.”
Melancholic guitar instrumental fades out. Screen fades to black. Cut to Copyright- @2022. MADIPHA. All rights reserved.
About this video ‘Put Words into Action!’
Malawians with disabilities continue to encounter inaccessible public infrastructure. *Audio descriptions for blind and low-vision audiences. .
Filmmaker: Julie-Marie Chibekete
Julie-Marie Chibekete is a program assistant (monitoring and evaluation) for the World Food Programme Malawi country office and an active member of the Spinal injuries Association of Malawi (SIAM). Read more about Julie-Marie Chibekete
Transcript for ‘Put Words into Action!’
The video begins with a piano instrumental playing and a black screen with yellow words. A woman narrator reads the words, “Malawi Accessibility Challenges.”
Video cuts to a driveway, where Bernadetta Vazi, a woman in a wheelchair, is moving toward a curtained doorway. As she disappears into the doorway, a girl with a green shirt begins to run across the driveway but shyly stops when she sees the camera.
Video cuts to another driveway, where Derrick Kumwenda, a man in a wheelchair, is being pushed by another man up a steep ramp to a doorway. The ramp is blocked by a rolled-up rug, and the wheelchair is unable to get past it.
Cut to a yellow screen with black words. The narrator reads the words, which say, “12 years since Malawi ratified the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD).”
The screen transitions to brown with white and yellow words that the woman continues to read, “It is 10 years into Malawi Disability Act.”
The video cuts to Sekerani Kufakwina, who is a government human resource officer and disability advocate. Sekerani is Deaf. He wears a red and white shirt with tan khakis and is sitting in a chair outside. A phone is on his lap. A sign language interpreter appears on the bottom-right corner of the screen and interprets for the remainder of the video.
Sekerani signs as the narrator interpret, “Malawi ratified the UNCRPD in 2009. A lot was just signed on paper with no implementation. The policyholders and general public have a poor understanding on issues of accessibility. Physical access and access to information is still a challenge.”
The screen cuts to a yellow background with black words. The narrator reads, “Poor accessibility continues to deny persons with disabilities independence, posing a safety and security threat.”
The screen cuts to Derrick again as he gets out of a white car, assisted by the same man as before. After shutting the car door, Derrick neatly stacks a folder with white papers on his lap as he is wheeled toward the ramp, which we see if blocked by the rug.
The screen cuts to an interview with Derrick sitting in his wheelchair outside a white stucco building. He is wearing a purple and white striped shirt, black pants, and white sports shoes. He introduces himself: “My name is Derrick Kumwenda. I’m paraplegic, I have what is spinal cord injury. And currently, I’m a credit analyst working for National Economic Empowerment Fund.”
The video cuts to a newspaper headline that says “Make ATMs user friendly.”
Derrick continues, “I‘ve had challenges in accessibility, mostly to the public sector buildings and services.” Cut to a photo of a wheelchair-inaccessible “NB Moneycard” ATM. “I cannot go to the market because the places are not accessible for someone who is disabled, mostly on a wheelchair.” The video cuts to a point-of-view shot of an “NB Moneycard” branch from inside a car. Because of the way the ramps are constructed, I cannot do it on my own,” says Derrick. The video cuts to a steep inaccessible wheelchair ramp entrance to a building. “I have to rely on someone to push me on the wheelchair. So, sometimes you find that the person who is pushing you is not experienced enough and they can even push you away from the ramps.”
The video cuts to Derrick being pushed up the blocked ramp again. The man pushing him is unable to get the wheelchair past the rug and has to move it out of the way.
Derrick continues, “The workspace is not that friendly because the workstations that are there are not accessible enough for someone on a wheelchair. Because this problem, I’m forced either to come out of the office to visit nearby places whereby I can access the toilets, or sometimes I’m forced to work from home.”
The video cuts to a headline that says, “People with disabilities struggle in Malawi’s cities.” The sub-headline says, “How can the Sustainable Development Goals help children with disabilities in Malawi’s cities?
Derrick continues, “In my opinion government is giving a blind eye to the whole situation because each and every year the budget passes by.”
The video cuts to another headline that says, “Malawian school children with disability struggle to access drinking water and toilets.”
Derrick continues, “We are even given an example of the Ministry of Disability whereby I would have thought that that would have been the most friendly place.”
The video cuts to a photo of several people sitting in the wing of the Disability Ministry.
Derrick continues, “You find that to access the wing of the Disability [Ministry]; it’s on the second floor, and most of the times the lifts to the place are broken down. Newly constructed buildings.”
The video cuts to a man walking up a ramp to get to the wing of the Disability Ministry. A caption reads, “The ramp is too steep.” Then the video cuts to a photo of another steep ramp.
Derrick continues, “Newly constructed buildings, they easily pass by the city assemblies and the city councils whereby they are supposed to be rejected because most of the buildings are not disabled-friendly.” Cut to another photo of a steep ramp.
The video cuts to Bernadetta as she negotiates a steep hill in her wheelchair. Cut to an interview with Bernadetta. She is wearing a black shirt, pants, and shoes. She sits in her wheelchair in a shaded grove of trees. Bernadetta [speaking in Chichewa] says, “Bernadetta Vazi, Executive Director of Joy Abilities Empowerment. As the director of JAE, I’m quite often called to meetings in different hotels.”
The video cuts to a photo of Bernadetta holding a microphone and speaking in a hotel lobby. Cut to another photo of Bernadetta sitting with colleagues at a hotel conference table. Bernadetta continues, “However, I fail to concentrate on the meeting’s agenda, as I keep thinking of how I access the different facilities.”
The video cuts to a photo of a hotel bathroom. A caption reads, “Wheelchair-inaccessible bathroom design.”
Bernadetta says, “I switch my focus to how I will maneuver whilst my colleagues, physically able-bodied, are relaxed.”
The video cuts to Bernadetta pushing down a dirt road in a wheelchair.
The video cuts to a yellow screen with black words, and the narrator reads, “A fundamental human right is for disabled people to gain access and participation on an equal level with others, regardless of our impairments.”
The video transitions to another yellow screen with black words and the narrator reads, “Article 9, paragraphs 2 (d) and (e) of the UNCRPD, provide that buildings and other places open to the public should have signage in Braille and in easy-to-read and understandable form.”
“And that live assistance and intermediaries, including guides, readers and professional sign-language interpreters should be provided to facilitate accessibility.”
The video cuts to Sekerani’s interview again. He signs, “Government should try to find sign language interpreter trainings.”
The video cuts to vaccine footage by Reuters of Malawian officials displaying COVID vaccines. Several people wear masks with a crowd around them.
Sekerani continues, “Because of the language barrier, Deaf persons in the country have inadequate information on COVID and its updates.” The video cuts to two doses of the COVID vaccine on a red table. A brief cut to multiple COVID vaccines in a cardboard box. “Like vaccination and information on the recently discovered variant,” he says.
The video cuts to shots of the Kamuzu Central Hospital.
Sekerani continues, “This information is broadcasted on TV on daily basis, but it is in a language that a Deaf person can’t understand.”
Cut to a yellow screen with black letters. The narrator reads, “Currently, there are less than 10 professional sign language interpreters in Malawi. The national media house has two interpreters restricted to news, which is 1 to 3 percent of national coverage. With this, not even the presidential national address on COVID is covered.”
Cut to a newspaper headline that reads, “Malawi government shows little interest in improving access to information.”
The video cuts to a woman, Martha Chambalo, wearing a flowing purple skirt and red blouse walking barefoot around the corner of a building. Cut to Martha Chambalo sitting on a chair in front of the bumper of a red van.
Martha [speaking in Chichewa] says, “I’m Martha Chambalo, popularly known as Mrs. Kainga. I am a visually impaired lady. I’m the teacher at the Nanthenje Primary School. I became visually impaired at a young age.”
The video cuts to Martha indoors, arranging furniture in a living room.
Martha says, “Growing up, I encountered several challenges. In class when given assignments, I couldn’t read on the chalkboard. I relied on classmates to read it out for me but some denied to help.”
The video cuts to Martha straightening a tablecloth in a living room.
She continues, “I could stay behind to copy notes. Books were scarce at school, even at the teacher training college, which made it hard for me to learn.
The video cuts to another shot of Martha straightening a tablecloth in a living room.
She continues, “ It is by God’s grace and my hard work that I completed school.”
Video cuts to Martha seated behind a red van. She says, “Going to the borehole, people in the community laughed at me, saying I can’t draw water as I was blind. ‘Why does she bother to go to school? She can’t succeed. Even if she succeeds, who would employ a person who is visually impaired?’”
The video cuts to Martha arranging items in a living room. She says, “I see grace that I’m working and supporting even those that laughed at me. Working with the Minister of Education as a teacher, we are challenged with lack of teachers and learners with books that are in Braille.”
The video cuts to a shot of Martha collecting a book and placing it on a table in a living room.
Martha continues, “The Minister says it’s expensive, hence teachers with visual impairment fail to effectively deliver as fellow sighted colleagues do. Even writing materials like Perkins Brailler, stylus, and Marburg [Braille instrument setting] are not available. We just use our experience to teach. We ask colleagues to help read out tomorrow’s classwork. Some don’t offer to help, saying they don‘t share our salary.”
Cut to Martha reading a textbook in Braille as she sits in her living room. “In class, we use more intelligent pupils to identify those lacking behind and other class management methods like group work I employed.”
The screen cuts to a yellow screen with black words. The narrator says, “Accessibility is a civil right, a human rights principle running through the UNCRPD. Inaccessibility is discrimination, a violation of the right to equality, freedom of movement, or independent living.”
“Human rights are indivisible, interdependent, and interrelated. There is a cascading effect when just one right is denied.”
The video cuts to Martha sitting on the bumper of the red car, saying, “I feel government just wants to be perceived as thinking of us as people, persons with disabilities. but no tangible action. They are failing.
The video cuts to a slow-motion shot of Martha and her fingers reading Braille. “They say our Braille materials are expensive, why is government failing to buy Braille materials?” she asks. “This affects employment opportunities for the disabled. But yet the same government is able to buy books for other people, printers, which are equally expensive. Persons with disabilities are restricted to teaching because of accessibilities issues yet they can deliver beyond teaching. We are capable of being employed in various ministries. Disability should not be a barrier. I have never seen government giving assisted devices like white canes to the blind or wheelchairs to people with mobility challenges. Only non-government organizations intervene.”
The video cuts back to Sekerani’s interview. He signs, “I have few words. This is time to act. For years it has been a song and a lot has been signed. But this is a time to act. The 2018 Disability Act Agenda must be adapted. We have to act now. Paperwork time is over. Laws are provided. They must be followed and enforced.”
The video cuts to Derrick saying, “I think the government needs to really to think seriously about the Disability Act because it’s affecting most of the disabled people in the country. Economically, socially, they’ve been affected.”
The video cuts to Bernadetta moving outside in a wheelchair towards Julie-Marie Chibekete, another woman who is also in a wheelchair. Julie-Marie is holding a phone with a laptop on her lap. Derrick continues, “Because it doesn’t really necessarily require the government to push in money. There are some other issues that just need policy direction.”
The video cuts to a yellow background with black words. The narrator reads the words, which are all quotes from Sekerani, Martha, Derrick, and Bernadetta.
“Everyone, irrespective of disability, needs access to buildings and information. This is time to act!” – Sekerani Kufakwina
“Poor accessibility is a serious violation of our human rights. Accessible Language Now!” – Martha Chimbalo
“When I travel beyond Malawi I feel at home. I am more independent. We need an accessible Malawi now!” – Derrick Kumwenda
“Accessible buildings are essential for equal participation. Accessibility by Universal Design Now!” – Bernadetta Vazi
A title card says “Copyright @2022 SIAM All Rights Reserved.”
About this video Equal Opportunity for All
Driven by his own experiences with DeafBlindness, Solomon Olakunle Okelola advocates for the rights of people with disabilities to be fully included in society. *Audio descriptions for blind and low-vision audiences.
Filmmaker: Oluwabukolami Omolara Badmus
Oluwabukolami Omolara Badumus is a disability rights activist and feminist based in Lagos, Nigeria. She is both the financial secretary and Lagos state coordinator for the Lionheart Ability Leaders International Foundation (LALIF). Read more about Oluwabukolami Omolara Badmus
Transcript for Equal Opportunity for All
The video starts with soft, hopeful guitar music, mixed with some trumpet. Cut to a metal gate. Solomon Olakunle Okelola opens the gate and walks through. He is wearing a green button-down shirt and brown pants and has a headset around his neck. He is carrying a white cane. Okelola is a Nigerian man with closely cropped hair. He is DeafBlind.
“My name is Solomon Olakunle Okelola,” he says. He closes the gate behind him.
Cut to Okelola sitting in an interview. He is wearing a red turtleneck shirt and a hearing aid in one ear. The interview background is a white, shimmery curtain with diagonal stripes of brown and tan. “And I am the executive director Lionheart Ability Leaders International Foundation.”
Okelola locks the gate and, using his cane, walks toward the building. “Lionheart Ability Leaders International Foundation is a non-governmental organization of patriotic citizens who have the zeal to work together to make a difference in their society with special regard to individuals with disabilities – women and children.”
Okelola is standing at the bottom of the stairs. “Some people think DeafBlind cannot climb the staircase. Here we go!” he says. Okelola folds up his cane and starts walking up the stairs. When he gets to the top, he swings from a bar: “Here we are!”
Cut to inside the Lionheart offices. A man stands at a table, talking with staff. “We work to enlighten the general public and the government about the ability of individuals living with disability about the true nature and need of these individuals and how everybody can join hands together to provide for these needs with the aim of giving these individuals ample opportunity to lead meaningful and productive lives in their society,” says Okelola. More shots from inside the office. A man with dark sunglasses sits in a chair. He has a mask around his neck and is wearing a brown striped, short-sleeve polo shirt. He is talking with the man standing at the table. A woman with albinism looks at her phone. She has long, brownish-red hair and is wearing a pink shirt and sunglasses on her head. Another woman with large glasses and her hair piled into bun smiles at the camera. She is wearing a pink, frilly blouse.
Cut to the man with dark sunglasses sitting in the chair. Okelola says, “We work to equip people with the communication, interpersonal and emotional intelligence that will enable them to live peacefully one with another to bring out the best of themselves for self-actualization and for societal progress and transformation.”
Cut to Okelola swinging from the bar at the top of the stairs. He says, “And!” He drops his cane, and it clatters down the stairs. “I think we have to do that one again,” he says. Someone laughs off-camera.
A quick fade to black, and then these words come onscreen: Copyright @2021 Lionheart Ability Leaders International Foundation. All rights reserved.
About this video If There’s a Wheel, There’s a Way
SIAM's Scader Louis works to address the needs of persons with spinal cord injuries from a rights-based approach. *Audio descriptions for blind and low-vision audiences.
Filmmaker: Julie-Marie Chibekete
Julie-Marie Chibekete is a program assistant (monitoring and evaluation) for the World Food Programme Malawi country office and an active member of the Spinal injuries Association of Malawi (SIAM). Read more about Julie-Marie Chibekete
Transcript for If There’s a Wheel, There’s a Way
Video starts with soft piano music with guitar. Scader Louis, a Malawian woman with short dark hair and a pink shirt and floral pants, is seated in a wheelchair at her desk. She wheels her chair toward the camera. “So my name is Scader Louis,” she says. “I’m the co-founder of Spinal Injuries Association of Malawi.”
Video cuts to a closer shot of Scader at her desk, looking at her computer. “I’m also the vice-chairperson of Federation of Disability Organizations (FEDOMA) in Malawi,” says Scader, as the video cuts to her in an interview. She is seated in front of a beige couch and wall, with patterned brown-and-white curtains behind her.
Video cuts to a group of men in wheelchairs gathered in a circle outside. “SIAM – Spinal Injuries Association of Malawi – is a grouping of people like myself who have spinal cord injury,” says Scader. Video cuts to a series of photos of SIAM members. “And it was started by a group of, I think, five people (I was the only lady) in 2011 after we noted that persons with spinal cord injuries, we are facing a lot of challenges.”
Scader continues: “When you look at someone in a wheelchair like myself, often people assume that my challenges are the same as someone maybe with polio.” Video cuts to a photo of SIAM members seated on a bench inside. “With spinal cord injury comes a number of secondary complications with the injuries,” says Scader. “Because this is an acquired disability, you may not have had a full understanding of your rights as a person, but you also need to be integrated back into the community and be able to participate and to make your own contributions.”
Video cuts to a woman in a wheelchair collecting money. People are dancing around her and throwing money into her bucket. “So in 2011, there wasn’t a lot of information around spinal cord injuries,” says Scader. Video cuts to a series of photos of SIAM members. “There wasn’t a network, and because as a group we noted that gap we thought of starting this grouping, and I’m happy to report that over the years it has really grown,” she says. “So we are working with the Queen Elizabeth Central Hospital.” Video cuts to an exterior shot of the hospital. “We were also partnering then at the district level with Malawi Against Physical Disabilities (MAP), and we are visiting rehabilitation centers,” Scader adds. Video cuts to an exterior of MAP with a banner across the front of the building that says, “MAP: Malawi Against Physical Disabilities.”
Video cuts to a photo of a Malawian man pushing a woman in a wheelchair over a threshold and into a brick building. “We are also visiting our peers in their homes,” says Scader. “We are in all the regions in Malawi. We are in all the districts.”
Video cuts to a wide shot of a group of Malawian men playing basketball outside. You can hear someone off-camera laughing. “The funding that we recently received from DRF – the Disability Rights Fund – we are training more people to become peer supporters even in their districts, “Scader continues.
Video shows a young Malawian woman in a wheelchair receiving a certificate at an event. She and the presenter turn to the camera and pose with the certificate. “There’s a lot that we need to do because government really is not placing issues of disability as a priority,” says Scader. Video cuts to SIAM members in wheelchairs playing basketball outside.
“Government is a duty-bearer, so it is supposed to take care of its citizens,” she says. “Persons with spinal cord injury but also people with disabilities they do pay taxes, and they’re supposed to benefit from the programs that government is implementing.”
Video cuts to Scader in the interview. “We shouldn’t leave anyone behind, so we have to be involved from the designing to the planning to the implementation to the monitoring and all that, and this doesn’t only go to government but it also goes to non-government organizations because they are also implementing a lot of programs which are not inclusive by design,” she says.
Video shows more SIAM members playing basketball. It ends on the young woman in the wheelchair who received a certificate maneuvering her wheelchair and facing the camera for a second before turning away.
A title card says, “Copyright @2021 SIAM. All rights reserved.”
About this video It Takes a Village
After experiencing a mental health crisis of her own, Robinah Alambuya founded TRIUMPH Uganda to help others with psychosocial disabilities in her community. *Audio descriptions for blind and low-vision audiences.
Filmmaker: Esther Suubi
Esther Suubi is an advocate for young girls and women's voices and a peer educator at Triumph Mental Health Support. Read more about Esther Suubi
Transcript for It Takes a Village
Video opens with the Basoga Tribe from Uganda performing a cultural dance. They are wearing black T-shirts and long, orange scarves tied around their waists. Video cuts to TRIUMPH’s Uganda’s red and blue logo. Melancholic synth music starts to play.
“I needed a platform where I can use my story, my lived experience to build hope in other families who experienced mental health issues like what I’ve gone through,” says Robinah Alambuya, TRIUMPH’s Uganda’s executive director, “and displaying that it is possible to have mental health issue, yet you continue with your life, making a meaningful contribution to society.” Robinah is wearing a pink and brown shirt with star designs. Video cuts to a younger Robinah leading a meeting with other TRIUMPH members. Then it transitions to a photo of Robinah wearing a bright blue shirt and white headscarf. She is holding a sign that says, “#Stop Sexual Abuse!”.
“Our first meetings were in 2008,” she says. Video cuts to a photo of two TRIUMPH members holding a sign that says, “Why not affirmative action also in elections.”
“It was a family initiative to begin with. We began calling people on a monthly basis to come home and just to be…We take some tea together,” says Robinah. Video shows a series of photos of TRIUMPH member gatherings. “We would call members who have experienced mental health issues and they would come around – those who chose to come – they would come around and we just share some tea together, and we talk about these issues and our experiences. Then we’ll share information. We’ll do encourage one another. It was like a peer-support group.”
Video cuts to Robinah standing outside and talking with government officials. In the next shot, a group of young Ugandan women stands in a circle outside. “We come, and we share freely and openly that this is part of life and these people are part of our community, which we need to include them and make sure that they participate and actively get involved.”
Series of photos of TRIUMPH members and Robinah. “And also seeing the fruit from our lives, for us have stood out, and we began mentoring the younger people, so the younger people we’ve mentored especially the families can witness because, like children who have fallen out of school, some have come back to school,” says Robinah. “Children who had lost hope that maybe they would never make it in life, they have gone even up to university with the support that they get from the peer support that we give them – the information, the hope-building.”
Video shows a series of photos of young TRIUMPH members dancing and posing for the camera. “The impact of TRIUMPH and our work as prior TRIUMPH can be seen or witnessed by families. We have one of the younger ladies who is well-known – Esther Suubi, who was connected to me by the mother because I shared a lived experience,” says Robinah. “One of her years was really distracted by what she was experiencing.”
Video shows photos of Esther at various family and TRIUMPH events and also speaking to the camera as a spokesperson for TRIUMPH. “When she was connected to me, of course, I just kept on using my story and caused the heart to see light for the in the future, and then the training because we mediated on that time Disability Rights Fund had us to build the self-esteem of these younger women, adults and younger women with psychosocial disabilities,” says Robinah. “We were able to give trainings on building self-esteem, hope-building, and strengthening the peer support among the younger people.”
Robinah continues: “I’m so privileged to see that now she’s really serving in TRIUMPH. Happily, she’s now a peer educator, supporting others, and she’s even leading our Disability Justice Project as a fellow.” Video cuts to a photo of Esther holding a camera and then to a screenshot of an article Esther wrote for the Disability Justice Project. The headline is, “Teen Pregnancy During Covid: Triumph Uganda advocates for better access to sexual and reproductive health services for women and girls with disabilities.”
“I’m very proud, and I also feel good that I’ve added value in my lifetime,” says Robinah. “I’m adding value to other people’s lives.”
A black title card with black letters on a yellow background says, “Copyright – @2021. Triumph Uganda. All rights reserved.”
About this video Finding the Light
NOUSPR has a dream - a world in which all people with psychosocial disabilities are treated with the respect and dignity. *Audio descriptions for blind and low-vision audiences.
Filmmaker: Rose Umutesi
Rose Umutesi is chairperson of the National Organization of Users and Survivors of Psychiatry in Rwanda and co-founder and treasurer of its umbrella organization, National Union of Disabilities Organizations of Rwanda. Read more about Rose Umutesi
Transcript for Finding the Light
Video starts with gentle guitar music and a photo of NOUSPR members standing in a circle outside. A Rwandan man wearing a mask appears to be talking with them. The people in the circle have bundles of supplies at their feet. The next photo is of NOUSPR members sitting in a room in white chairs, masked, and the third photo shows NOUSPR members sitting on the grass with more bundles of supplies in front of them.
The next shot is of a NOUSPR billboard. It says “NOUSPR-UBUMUNTO: National Organisation of Users and Survivors of Psychiatry in Rwanda” and includes contact information. It also shows the NOUSPR logo – a drawn face – and tagline: “seeking dignity.”
The video cuts to an interview with Mariza Munah, NOUSPR’s advocacy officer. She is sitting on a large, brownish beige couch and wearing a brown and orange dress. Her short, dark hair is pulled back in a scarf. “I believe that mental health issue in our country is one of the neglected disabilities,” she says. The video cuts to Mariza in the office. She is sitting behind a computer, with a NOUSPR poster behind her. “So I think direct advocacy can work here in our country,” she says. “If we really meet those people who can really bring change like the politicians, the authorities, the police, the Ministry of Health, all those organizations that can really bring change.”
The video cuts to Mariza walking down a dusty street. “With that, people with mental health issues can get help,” she says. The video cuts back to Mariza in the interview on the couch. “I have been working with NOUSPR for a long time now,” she says. Video shows a photo of NOUSPR members standing outside again, with bundles of supplies at their feet. Video cuts to a closeup shot of four NOUSPR members talking in a room. There are two men and two women, and two of them are pointing at something in the corner. Cut to a headline from an online news publication, Rwanda Focus (Kigali), that says “Rwanda: Organization Helps Mental Health Patients to be Productive.” The beginning of the article says, “The National Organization of Users and Survivors of Psychiatry (NOUSPR), which advocates for people with current or past psychosocial problems, has set up an initiative to group its members according to their health situation to form cooperatives so that they can earn a living. Seated in a room making the baskets, trays, mats, others on tailoring machines, a group of people who have experienced or are experiencing mental health problems are being supervised by chairwoman Shemsha Murekatete.”
Video returns to Mariza on the couch. “In our culture, we don’t believe that there is such a thing like depression, like anxiety,” she says. Video cuts to three NOUSPR members in white coats (like the kind doctors would wear) with the NOUSPR logo. “They believe that you just have to face whatever comes your way and still be strong and still be normal,” says Mariza. Video cuts to a photo of dozens of NOUSPR members sitting in front of a NOUSPR banner that says, “Focus on Suicide Prevention.”
“Now that people are realizing that this is an issue, it’s a very big problem,” Mariza says, “especially with what our country went through, the genocide and the war.” Video cuts to an old photo from Rwanda. Military vehicles drive down a dusty road while families with bundles on their backs walk beside them. Cut to a picture of a woman in a blue shirt. She has braids and is wearing glasses. She is seated and looking at a wall of pictures of people who died during the Rwandan genocide. Video cuts to a screenshot of an academic study with the headline “Rwanda – lasting imprints of genocide: trauma, mental health and psychosocial conditions in survivors, former prisoners, and their children.” The academic study’s background says, “The 1994 genocide of the Tutsi in Rwanda left about one million people dead in a period of only three months. The present study aimed to examine the level of trauma exposure, psychopathology, and risk factors for posttraumatic disorder (PTSD) in survivors and former prisoners accused of participation in the genocide as well as their respective descendants.”
“I think it’s going to be very, very difficult to make people who have been understanding this thing in the wrong way for a very long period of time.” Video cuts to Mariza walking down a street. “To make them now see how things really are,” says Mariza. Video cuts to a photo of a purple banner that says, “The light will eventually overcome the darkness of genocide.”
“I think it’s not easy, but it’s possible that people can change their mindset,” says Mariza.
Transition to a title card with words highlighted in yellow on a black screen that says, “Copyright – @2021 NOUSPR. All rights reserved.”
About this video Disability and HIV
MADIPHA is advocating for a person-centered, disability-inclusive response to HIV in Uganda. *Audio descriptions for blind and low-vision audiences.
Filmmaker: Nissy Namuyomba
Nissy Namuyomba is an administrative assistant at the Masaka Association of Persons with Disabilities Living with HIV/AIDs and a volunteer with the Masaka Association of Persons with Cerebral Palsy in Uganda. Read more about Nissy Namuyomba
Transcript for Disability and HIV
Video starts with soft guitar music with moody vocals and a photo of Richard Musisi, the executive director of MADIPHA. Richard smiles into the camera and is wearing a blue MADIPHA polo shirt. “Musisi Richard is my name,” he says. “I am the executive director of MADIPHA, of Masaka Association of Persons with Disabilities Who are Living with HIV and AIDS.” Video cuts to a photo of Richard gesturing to a small group of people outside. Cut to another photo of Richard posing with a person in a wheelchair. They are at a marathon event. People appear to be warming up in the background. Richard continues, “It started in 2009.”
Video cuts to a photo of a large group of MADIPHA members holding up a white MADIPHA banner. A second photo shows MADIPHA members gathered inside, listening to someone speak. A MADIPHA banner hangs across a long, side window.
Video cuts to an interview setup with Wanyana Cate, co-founder of MADIPHA. She has short, dark hair and is wearing a beige dress patterned with diamonds. “We started as five people, and we decided to start MADIPHA with the aim of showing people that there is a possibility that PWDs can get infected with HIV/AIDS and still live long lives,” she says.
Video cuts to a photo of a large group of people outside with MADIPHA banner behind them. A second photo shows an audience from behind listening to someone speak at the front of the room. A third photo shows MADIPHA members sitting on benches. One person is standing up. “As MADIPHA, so far in those 10 years we’ve done quite a lot of work,” says Richard. Video cuts to people with disabilities gathering outside at an annual forum for World AIDS Day and International Day of Persons with Disabilities. Several people are holding crutches and talking in a circle. Video cuts to a different scene at the forum – a man in a wheelchair and two government officials next to him, with people gathered at tables behind them. “One, sensitizing and mobilizing PWDs to seek for HIV and AIDS services within their nearby local health facilities,” says Richard. “We have also supported them to live positively through those peer-supported groups they are organized in.”
Video shows more photos. The first is a group of MADIPHA members looking at a whiteboard with notes written on it. The words “Masaka Association of Persons with Disabilities Who are Living with HIV and AIDS” are at the top of the whiteboard. A boy in a wheelchair reaches for something on the floor. In the second photo, a man is sitting at a table, holding a piece of bread and laughing. A woman in a purple dress sits next to him.
The video cuts to a photo of a man walking outside and carrying a large, green thermos. He is wearing a red, checked cap and a sports coat with a MADIPHA polo shirt underneath. He is smiling broadly. The video cuts to another photo of MADIPHA members posing for the camera outside a building. “We have also done a lot of work around advocacy to ensure that the rights for PWDs who are with living with HIV and AIDS are respected, especially at the service delivery centers but also even the policymakers themselves to ensure that people with disabilities can access those services without any form of discrimination,” says Richard. Brief transition to Richard and other people gathered at the Annual Forum for World AIDS Day and International Day of Persons with Disabilities. Video cuts to a photo of a boy in a wheelchair speaking into a microphone he’s holding. A second photo shows an older woman sitting next to a young girl. They are peeling the eggs they’re about to eat. A third photo shows a woman in a light pink and grey headscarf smiling next to a window.
“We try to work with other stakeholders, the National Union for People with Disabilities, the National HIV and AIDS service organizations,” says Richard. Video cuts to a photo of MADIPHA members listening to a woman speak at the front of the room. A second photo shows MADIPHA members listening to a man speak at the front of the aforementioned room. A third photo shows a woman in a white suit smiling at the camera.
Video cuts to a photo of a rural village. “In the past 10 years since MADIPHA was established PWDs have been motivated to live longer and have gained more self-esteem,” says Wanyana. Video shows a man wearing a checked shirt looking contemplative. Light shines on his face through a side window. A second photo shows a woman holding a baby. A third photo shows people gathered around tables, eating.
“They have been given startup capital to enable them to run small businesses from their homes depending on their abilities and knowledge and understand that they have to work hard in order to sustain their lives,” says Wanyana. A woman in a pink, knit cap and yellow T-shirt unlocks a cage. In a second shot, she bends down and tends to her chickens.
Video cuts to a young boy in a long-sleeved, light green T-shirt staring into the camera. A second photo shows three MADIPHA members – a man and two women – talking with a MADIPHA banner behind them. One of the women hands the man what looks like a certificate. A third video shows Richard and other MADIPHA members in MADIPHA polo shirts, posing for the camera outside. The video then cuts to a photo of Richard standing next to a woman with red hair and a multicolored pink scarf. They’re both holding microphones. “Because of the need of our work countrywide we are trying to change our registration status to say that we can fit within the national status. Soon will be called something like Association of Persons with Disabilities Who are Living with HIV and AIDS Uganda,” says Richard.
Video ends on soft trumpet music and a series of photos of MADIPHA members. The first is of a woman signing, and the second is a closeup of a woman with a white and pink headscarf, looking contemplative. A third photo is another gathering of MADIPHA members, with Richard talking into a microphone. The last photo is a closer shot of Richard talking into a microphone. At the end of the video, a black title card comes up that says, “Copyright @2021 MADIPHA. All rights reserved.
About this video Cara Belajar yang Berbeda
Penyandang Autisme di Indonesia Menempuh Jalan Sendiri Menuju Pendidikan dan Pekerjaan Kesempatan kerja terbatas bagi penyandang autisme di Indonesia. Tantangan muncul karena perbedaan komunikasi antara penyandang neurodiversitas dan neurotipikal – dan karena kurangnya penerimaan
Filmmaker: Naufal Asy-Syaddad
Naufal Asy-Syaddad is a disability rights activist with autism and chairperson of Yogasmara Foundation's youth group. Read more about Naufal Asy-Syaddad
Transcript for Cara Belajar yang Berbeda
Video dimulai dengan musik piano lembut dan layar animasi hitam, merah, putih, dan biru. Teks merah pada layar biru muda bertuliskan, “Naufal Asy-Syaddad.” Di bawahnya, teks putih bertuliskan, “DJP fellow from Indonesia.” Sulih suara Naufal Asy-Syaddad mengatakan, “Halo teman-teman. Perkenalkan, nama saya Naufal Asy Syaddad, DJP fellow dari Indonesia.”
Dipotong ke layar animasi hitam, putih, dan merah melingkar. Teks putih pada layar biru laut mengatakan, “Tema video ini.” Suara Asy-Syaddad melanjutkan, “Saya akan mengangkat tema kendala dalam mendapatkan kesempatan kerja bagi penyandang autisme.”
Dipotong ke layar animasi hitam, merah, putih, dan biru. Teks putih pada layar biru bertuliskan, “Kendala dalam mendapatkan kesempatan kerja bagi penyandang autisme.” Sulih suara Asy-Syaddad berlanjut, “Sebagai penyandang disabilitas autisme, mereka masih banyak mengalami kesalahpahaman.”
Dipotong ke layar animasi hitam, putih, dan merah melingkar. Teks putih pada layar biru muda bertuliskan, “Narasumber dalam video ini.” Sulih suara Asy-Syaddad berlanjut, “Sehingga ketika mereka sudah dewasa dan tiba waktunya untuk mencari pekerjaan, hal ini memiliki kesulitan tersendiri.”
Dipotong ke layar animasi merah dan merah muda melingkar. Teks merah pada layar putih bertuliskan, “M Atarriq Husein / Musisi penyandang autisme.” Sulih suara Asy-Syaddad berlanjut, “Kita memiliki 2 orang narasumber, yaitu Husein dan Faisal.”
Dipotong ke layar animasi merah dan merah muda melingkar. Teks merah pada layar putih bertuliskan, “Muhammad Faisal Hakim / Pengusaha telur asin penyandang autisme.” Sulih suara Asy-Syaddad berlanjut, “Mereka akan menceritakan bagaimana upaya-upaya mereka dalam mendapatkan pekerjaan yang mereka inginkan.”
Dipotong ke pan shot M. Attariq Husein, seorang pria dan musisi Indonesia penyandang autisme, mengenakan kemeja merah dan berbicara dengan para siswa di ruang kelas musik. Di latar belakang, seorang anak laki-laki Indonesia mengenakan kacamata dan kemeja hitam memainkan keyboard. Seorang pria Indonesia yang mengenakan masker wajah biru, kacamata, dan kemeja bermotif mustard, memperhatikan siswa yang sedang bermain keyboard. Sebuah papan tulis dan dinding plum berada di belakang mereka. Di sebelah kanan, seorang pria Indonesia duduk di meja, mengenakan masker wajah putih dan kemeja bermotif hijau-merah.
Dipotong ke dengan Husein yang berbicara dengan seorang gadis muda Indonesia yang mengenakan jilbab putih. Pria Indonesia yang mengenakan masker wajah biru dan kemeja bermotif mustard bergabung dalam percakapan mereka. Di latar belakang, seorang anak laki-laki Indonesia duduk di tanah di sebelah kiri, dan anak laki-laki lain membuka pintu kelas.
Dipotong ke Husein, mengenakan kemeja hitam-merah dengan tulisan putih dan gambar orang di atasnya, duduk di sofa dua tempat duduk berwarna coklat di sebuah ruangan. Dinding krem berada di latar belakang. Asy-Syaddad, seorang pemuda Indonesia yang mengenakan kacamata, celana putih, dan kemeja hijau muda, bergabung dengan Husein di sofa. Asy-Syaddad berbicara ke kamera, “Saat ini saya sedang bersama Muhammad Atarriq Husein. Nah, dia ini adalah penyandang diasabilitas autisme yang lahir pada tanggal 26 Januari tahun 2000. Jadi usianya dia itu sudah 22 tahun. Nah, dia itu memiliki bakat di bidang musik.”
Dipotong ke Husein bernyanyi ke dalam mikrofon di ruang kelas musik. Sebuah papan tulis, dudukan mikrofon, amplifier, speaker, dan barang-barang kelas lainnya berada di latar belakang. Voiceover Asy-Syaddad berlanjut, “Dan dia itu telah memiliki banyak prestasi di bidang musik.”
Dipotong ke Husein dan Asy-Syaddad yang duduk di sofa dua tempat duduk berwarna coklat. Husein berbicara ke kamera, “Ada. pasti itu ya, kendalanya itu. Bukan hanya kuliah jurusan musik. Gue aja yang gak tahu… apa ya… kan di sekolahku kan nggak ada diajari not balok, semuanya itu dari otodidak. Semuanya itu dari otodidak, jadi benar-benar sesuai kemampuannya, dipelajari sendiri-sendiri itu. Kalau di perguruan tinggi yang asli itu, saya diceritain sama guru saya Pak Harsono, ‘Lu kuliah di situ gak bakal mampu.’” Musik piano yang lembut memudar.
Dipotong ke Husein yang sedang menabuh drum di atas drum set hitam di sudut ruang kelas musik, di depan dinding plum. Sebuah gitar bass, amplifier, dan speaker hitam berada di sebelah kanan. Seseorang bernyanyi dengan musik di luar kamera. Husein melanjutkan suaranya, “‘Gak bakal mampunya gimana, gak bakal mampu. Lu akan ditanyain rumus, ditanyain not balok, ditanyain tulisan, yang gambar musik,’ sebenarnya kita gak mempelajari itu. Kita gak ada fasilitasnya seperti itu, baik di sekolah.”
Dipotong ke Husein dan Asy-Syaddad yang duduk di sofa coklat. Husein berkata, “Umum kayak belajar itu, balik lagi ke SMP dulu, kalo belajar kuliahnya itu balik lagi ke situ, lha saya gak mau. Ada kendalanya juga sih, nah kan untuk kuliahnya sendiri kalau untuk sekarang ini ya, untuk sekarang ini ABK baru masuk yang tuna rungu, tuna netra, sama tuna daksa. Yang tidak peduli fisiknya seperti apa yang penting otak mereka [non-disabilitas]. Sementara mereka yang memiliki autisme dan disabilitas psikologis, meskipun memiliki tubuh [non-disabilitas], seperti Anda, mereka memiliki [kebutuhan belajar] yang berbeda.” Musik piano yang lembut diputar lagi.
Dipotong ke Husein yang sedang bermain drum di ruang kelas musik. Voiceover Husein berlanjut, “Ho di bawah (rata-rata) itu lho… itu yg sangat disayangkan sama, itu lho di Indonesia, itu aja sih. Ada kendalanya sendiri makanya saya nggak mau lagi berkuliah.”
Dipotong ke Husein dan Asy-Syaddad yang duduk di sofa coklat. Asy-Syaddad, menoleh ke Husein, bertanya “Berkuliah di bidang musik ya?” Husein menjawab, “Nggak. Ya karena. Ada kendala. Bukan kendala sih, lebih tepatnya saya nggak tahu apa itu not balok, itu saya gak tahu apa itu itu. Kan pasti ditanyain juga itu, yang namanya rumus, misalkan ke matematika itu juga ditanyain juga itu.”
Dipotong ke Muhammad Faisal Hakim, seorang pria dan pengusaha Indonesia yang menyandang autisme, berjongkok di lantai ubin, mengelap telur rebus dalam mangkuk plastik ungu dengan kain kuning. Dia mengenakan kemeja biru kehijauan, celemek merah-putih, sarung tangan plastik transparan di tangan kanannya, dan celana hitam. Mangkuk plastik biru muda berada di sebelah kiri mangkuk plastik ungu, dan bak plastik dengan penutup merah dan label putih, berisi cairan dan telur rebus, berada di sebelah kanan. Di latar belakang, sebuah telepon dan tas hitam tergeletak di atas sofa abu-abu dan coklat.
Dipotong ke Faisal, ibunya, seorang wanita Indonesia yang mengenakan jilbab merah dan kacamata, duduk di atas pelatih putih-coklat bersama Asy-Syaddad. Faisal duduk di sebelah kiri dan mengenakan kemeja berwarna biru kehijauan dengan desain dan teks bertuliskan, “Thailand,” di tengahnya. Ibu Faisal duduk di tengah dan Asy-Syaddad duduk di sebelah kanan, mengenakan kemeja hijau muda dan kacamata hitam. Asy-Syaddad berkata ke kamera, “Saat ini saya bersama dengan Budhe Sri Murni dan Faisal. Nah Faisal ini adalah penyandang autisme juga yang telah berusia 25 tahun ya?” Ibu Faisal berkata, “Enam.” Asy-Syaddad melanjutkan, “26 tahun ya, dia telah berusia 26 tahun, sekarang dia penyandang autisme yang berwirausaha.”
Dipotong ke Faisal yang berjongkok di lantai ubin. Ia selesai membersihkan telur rebus dalam mangkuk plastik ungu dengan kain kuning. Ia memindahkan telur itu ke mangkuk plastik biru muda di sebelah kiri. Suara ibu Faisal mengatakan, “Untuk kendalanya tetap banyak Naufal ya, di sana mungkin dia tidak bisa mengikuti instruksi dari kepala sekolahnya.”
Dipotong ke Faisal, ibunya, dan Asy-Syaddad duduk di dalam kamar. Ibu Faisal berbicara kepada Asy-Syaddad dengan gerakan tangan, “Harus bagaimana, harus setelah ini, ini, ini, ini, Faisal tidak punya ide, seperti itu.”
Dipotong ke memperbesar dari Faisal yang mengenakan sarung tangan plastik dan menggiling siung bawang putih menggunakan lesung dan alu di atas lantai berubin putih. Sebuah bak mandi putih berada di sebelah kiri, dan dua handuk dapur berwarna-warni tergeletak di sebelah kanan. Sulih suara ibu Faisal berlanjut, “Tetapi, saya sebagai orang tua ketika Faisal itu sebelum masuk ke sana pun kan saya sudah, apa ya.”
Dipotong ke Faisal, ibunya, dan Asy-Syaddad. Ibu Faisal berbicara dengan gerakan tangan, “Mengusahakan di rumah itu ada sesuatu yang harus dia kerjakan, yaitu membuat telur asin.”
Dipotong ke bidikan close-up Faisal yang terus membersihkan telur rebus. Dia menempatkan telur lain di mangkuk plastik biru muda.
Dipotong ke Faisal, ibunya, dan Asy-Syaddad. Ibu Faisal berbicara dengan gerakan tangan, “Pernah. Dulu pernah daftar ke bandeng juwono ya, itu atas saran Bu Ema, Emanuella,
kenal kan? Itu beliau di sana.”
Dipotong ke bidikan close-up Faisal yang selesai menggosok telur terakhir dan berbalik untuk mengambil lesung dan alu di sebelah kiri. Satu mangkuk beras dan satu mangkuk lagi berisi cabai merah, siung bawang putih, dan jempol jahe berada di antara lesung dan mangkuk plastik. Suara ibu Faisal berlanjut, “Dan Faisal juga sudah mengikuti tes-tes, tes psikologi, tes ini.”
Dipotong ke Faisal, Asy-Syaddad. Ibu Faisal berbicara dengan gerakan tangan, “Ternyata dari pihak sana pun ada beberapa yang terima, tetapi ada bagian tertentu yang tidak mau
terima.”
Dipotong ke Faisal menyendok cabe yang sudah dihancurkan keluar dari mortalnya dengan sendok sayur berwarna merah muda dan krem dan mencampurkannya ke dalam bak plastik di sebelah kiri. Bak itu berisi cairan, dan sebuah label putih juga ada di atasnya. Voiceover ibu Faisal berlanjut, “Karena apa, Faisal sudah anaknya yang sudah mulai tak teratur di misalnya untuk sholat. Kalo bekerja di erlina itu kan di bandeng juwono gak bisa kan untuk kamu sholat harus tepat waktu.”
Dipotong keFaisal yang dibungkus kantong plastik, direndam di dalam bak plastik dengan label putih. Sulih suara ibu Faisal berlanjut, “Padahal di sini sedang banyak yg membeli, seperti itu. Takutnya nanti Faisal itu di sana ketemu orang banyak, dengan suara-suara orang-orang yang keluar, yang mungkin Faisal belum… belum.”
Potongan ke Faisal, ibunya, dan Asy-Syaddad. Ibu Faisal berbicara dengan gerakan tangan, “Mudeng dan nanti terbawa akhirnya dari pihak sana, sepertinya Faisal bekerja di rumah saja. Alhamdulillah saya senang sekali.” Musik piano lembut memudar.
Dipotong ke Faisal duduk bersila di lantai, memegang karton plastik berisi telur yang sudah jadi. Sebuah label pada karton bertuliskan, “Mas Faizal,” dalam Bahasa Indonesia. Sebuah bak plastik dengan tutup merah berada di sebelah kanan. Pengisi suara Asy-Syaddad mengatakan, “Jadi, kesimpulannya adalah individu autisme mengalami kesulitan mendapatkan kesempatan kerja dikarenakan kondisi khusus mereka, yaitu perbedaan cara komunikasi dan sosialisasi.” Musik band dimainkan dan seseorang bernyanyi bersama di luar kamera.
Dipotong ke Husein yang sedang bermain drum di ruang kelas musik. Saat lagu berakhir, dia meletakkan stik drumnya. Pengisi suara Asy-Syaddad melanjutkan, “Serta kurangnya penerimaan masyarakat terhadap penyandang autisme.” Orang-orang bertepuk tangan dan bersorak dalam Bahasa Indonesia di luar kamera.
Fade ke teks hitam dengan garis tepi kuning pada layar hitam yang bertuliskan, “Copyright – @2022 Yogasmara Foundation. Semua hak cipta dilindungi undang-undang.”
Fade ke teks hitam dengan garis tepi kuning pada layar hitam yang bertuliskan, “Dibuat dengan dukungan dari Proyek Keadilan Disabilitas dan Disability Rights Fund.” Logo Disability Justice Project adalah huruf “D” besar berwarna kuning dengan tombol putar hitam di tengahnya untuk menandakan video storytelling, dan teks putih bertuliskan “Disability Justice Project” di kiri bawah. Logo Disability Rights Fund – kotak putih dengan teks hitam bertuliskan, “Disability Rights Fund” – berada di kanan bawah layar.
About this video Bantuan yang Tertolak
Detail teknis dalam kebijakan bantuan sosial di Indonesia telah menyebabkan banyak penyandang disabilitas tidak mendapatkan bantuan keuangan dari pemerintah. *Video termasuk deskripsi audio. *Baca bersama dengan mengklik tombol cc pada pemutar YouTube Anda.
Filmmaker: Kinanty Andini
Kinanty Andini is a freelance graphic design and digital artist. She is affiliated with the Indonesia Mental Health Association (IMHA), also known as the Association of Healthy Souls. Read more about Kinanty Andini
Transcript for Bantuan yang Tertolak
Video dimulai dengan rekaman gerakan cepat awan yang melintas di atas monumen putih tinggi dan kolam hijau dengan air mancur. Sebuah patung berada di depan monumen itu. Pohon-pohon palem mengelilingi kolamnya. Gedung-gedung tinggi berada di latar belakang. Musik piano lembut diputar di sepanjang video.
Lalu muncul Yeni Rosa Damayanti, seorang wanita Indonesia dengan rambut hitam sebahu, duduk di kantor dan berbicara ke kamera dalam Bahasa Indonesia, “Skema perlindungan sosial pemerintah biasanya berbasis keluarga.” Dia adalah ketua Asosiasi Kesehatan Jiwa Indonesia (IMHA). Beberapa barang diletakkan di atas meja berwarna krem di belakang Yeni; ada surat dan sertifikat dalam bingkai, ada penghargaan, dan tanaman dalam pot.
Muncul Yeni yang sedang duduk di dekat meja di luar dan memegang cangkir putih. Berbagai tanaman berada di belakangnya. Dia berbicara dengan seseorang di luar sorotan kamera.
Muncul Yeni yang berbicara di kantor, “Jadi, perlindungan sosial diberikan kepada keluarga yang masuk dalam kriteria miskin.”
Muncul Yeni berbicara kepada audiens di luar sorotan kamera di sebuah kantor. Dia berdiri dan menggunakan gerakan tangan untuk berkomunikasi dengan pendengarnya. Dia juga memegang sepiring makanan. Selembar kertas putih ditempelka diketuk pintu cokelat di latar belakang berisi teks yang bertuliskan, “Kosong.” Suara Yeni terus terdengar, “Masalahnya adalah banyak penyandang disabilitas tinggal bersama keluarga mereka.”
Muncul ke seorang pria yang mendorong seorang wanita di kursi roda. Wanita di kursi roda berambut hitam yang dikuncir kuda. Masker wajah pria itu tergantung di sisi kiri wajahnya. Dua orang berjalan di depan pria dan wanita di kursi roda dan memasuki sebuah rumah. Sang pria tersebut membantu wanita di kursi roda berdiri. Sebuah kolam renang berada di latar depan. Suara Yeni berlanjut, “Dan keluarga yang mereka tinggali belum tentu dikategorikan miskin.”
Muncul Yeni yang sedang berbicara.
Muncul gambar gedung DPR Indonesia dari udara, sebuah gedung bertingkat rendah dengan atap hijau muda yang melengkung. Beberapa gedung bertingkat tinggi dan pepohonan berada di latar belakang. Orang-orang berada di tangga menuju gedung DPR itu. Suara Yeni melanjutkan, “Pemerintah diharapkan mengubah persepsi tentang bantuan sosial, tidak lagi hanya ditujukan kepada keluarga miskin tetapi juga ditujukan kepada individu-individu miskin dengan kriteria yang sangat mudah, yaitu pendapatan perorangan.”
Muncul Yeni yang sedang berbicara.
Muncul gambar a close-up, gerak perlahan seorang Indonesia yang sedang menghitung koin rupiah. Dompet coklat dan piring dengan roti bakar coklat berada di atas meja.
Muncul Yeni yang berbicara, “Harapan kami adalah karena penyandang disabilitas memiliki biaya tambahan terkait disabilitas yang tidak dialami oleh orang yang bukan penyandang disabilitas, mereka harus mendapatkan tunjangan, setidaknya untuk menutupi biaya tambahan tersebut.”
Muncul Yeni yang sedang berbicara dengan gerakan tangan kepada audiens di luar sorotan kamera. Sebuah lukisan bunga dalam bingkai tergantung di dinding, dan sebuah jendela berada di latar belakang.
Muncul Yeni yang berbicara, “Jadi harus ada tunjangan disabilitas yang diberikan kepada semua penyandang disabilitas.”
Muncul gambar close-up seseorang di kursi roda yang mengambil uang kertas dolar Amerika Serikat dari dompet abu-abu. Ada selimut di pangkuannya.
Muncul Yeni yang berbicara, “Terlepas dari kondisi ekonomi mereka.”
Muncul gambar bergerak di ruang tamu yang remang-remang dengan sofa cokelat, tirai jendela putih-abu-abu, dan bingkai foto di dinding. Muncul “Bambang,” yang suaranya disamarkan, berbicara dalam Bahasa Indonesia: “Saya tidak mendapatkan bantuan tunai sama sekali.” Bambang adalah seorang pria penyandang disabilitas psikososial yang tidak ingin disebutkan namanya.
Muncul gambar close-up tangan Bambang. Ia duduk di sofa coklat. Ia berkata dengan suara yang disamarkan, “Dan untuk DTKS (Data Terpadu Kesejahteraan Sosial), jujur, saya sangat ingin data saya ada di sana (menjadi calon penerima DTKS).”
Muncul Bambang. bangkit dari sofa coklat dan berjalan ke ruangan lain di sebelah kiri. Ada kursi-kursi coklat lainnya di sekitar area ruang tamu. Suaranya yang disamarkan berlanjut, “Karena DTKS-lah yang menentukan apakah kita mendapatkan KPDJ (Kartu Penyandang Disabilitas Jakarta) atau tidak.” Muncul Bambang sedang berbicara di sofa coklat.
Muncul gambar bergerak dari mobil dan sepeda motor yang melewati jalan yang sibuk yang dipenuhi dengan rumah dan toko-toko kecil. Beberapa orang berdiri di jalan yang sibuk. Suara Kinanty Andini mengatakan, “Meskipun Bambang tidak bekerja dan tidak memiliki penghasilan sendiri, kelayakannya untuk mendapatkan bantuan sosial didasarkan pada pendapatan keluarganya, bukan pendapatannya sendiri. Karena ibu dan saudara perempuannya tinggal di rumah yang lebih besar di bagian kota yang lebih kaya, mereka dianggap terlalu “kaya” baginya untuk memenuhi syarat mendapatkan bantuan.” Andini adalah seorang perempuan Indonesia dan pembuat video ini. Kutipan yang disebutkan sebelumnya ada dalam teks putih pada kartu judul biru di kiri bawah layar video.
Muncul Bambang berbicara dengan suara yang disamarkan, “Saya rasa kami paling berhak mendapatkan KPDJ karena kami adalah penyandang disabilitas. Kami punya biaya hidup tambahan seperti obat-obatan.”
Muncul Bambang membuka pintu depan rumahnya yang berwarna putih, membetulkan sandal hitamnya, lalu meninggalkan rumahnya. Suaranya yang disamarkan berlanjut, “Kalau itu (KPDJ) bisa menjangkau kami, itu akan sangat membantu kami sebagai penyandang disabilitas.”
About this video Coronavirus Fight Song
Music sensation SingStar Ali says persons with disabilities in Rwanda have been particularly impacted by the pandemic due to inaccessible washing stations, the inability to social distance, and more.
Filmmaker: SingStar Ali
SingStar Ali is based in Rwanda. Read more about SingStar Ali
Transcript for Coronavirus Fight Song
“Disability Rights Advocacy Fund” logo, UPHLS logo, and the words “WASH for All” in quotation marks appear on a white background. Slightly melancholic keyboard music starts. Cut to closeup of a man playing yellow guitar with “OC PICTURES” title card in white.
Cut to a man who is blind and wearing a black-and-gray, button-down shirt, sunglasses, leather jacket, jeans, and black-and-orange sneakers. He is holding a white cane. His name is SingStar Ali, and he is the musical artist of this music video. He appears in a few other scenes throughout the video: he stands in front of a black car with all the doors open, he plays a yellow guitar while sitting on a bench and wearing a white, button-down shirt and a black suit jacket. Lastly, in one closeup scene, he wears a pink-and-white, button-down shirt.
There is a brief transparent cut to a man wearing a blue face mask and then an infographic related to COVID-19.
Cut to SingStar singing the lyric “Singstar,” and a title card “SINGSTAR” appears on screen in white. He then sings “Ali.”
There is a “CORONA” title card in white. SingStar Ali sings the lyrics, “Coronavirus has already grown its roots.” In the lower righthand corner of the screen, a sign language interpreter translates the words. The interpreter is wearing a blue-and-yellow, tunic-like shirt and is seated in front of a white board. He remains in the bottom right corner for the rest of the music video.
SingStar Ali sings, “There isn’t a single person who didn’t feel the outcome.”
Cut to a closeup of a person wearing a blue mask looking at the camera to their left.
Cut to SingStar Ali singing, “For people with disability, it got even worse.”
Cut to a closeup for a hand wearing a blue glove. The hand is holding a test tube that is covered in white paper that says, “Coronavirus” and has two checkboxes for a negative or positive result. There is red liquid in the test tube. The test tube has a yellow cover. There is a red checkmark in the positive checkbox.
Cut to a closeup of a SingStar Ali singing, “Because they already had many obstacles that wouldn’t let them live independently/“Stay at home” happened, poverty got amplified, And stayed.”
A still photograph appears of people standing next to big blue buckets. There is a man wearing a blue face mask and a black-and-red shirt. He has a white watch on. There is a second man to his left wearing a green uniform and a green hat. The second man is wearing a blue face mask. Next to the second man on his left is a woman wearing a black hijab and an orange shirt. She has her hand out, and the man wearing the green uniform is putting something in her hand. To the woman’s left, there is a third man wearing a white face mask. He has on a red shirt and a blue shirt over it. There are yellow letters on the top left corner of the blue shirt.
Cut to SingStar Ali singing, “The ones we worked with began missing jobs/We pushed hard but in vain/We pushed hard but in vain/Life continued getting harder/We continued to strive.”
A closeup image of a blue face mask briefly appears on the screen.
Cut back to the SingStar Ali singing, “But poverty continued to be more than issue/Corona…virus.”
Cut to a closeup image of a hand wearing a blue glove. The hand is holding a test tube that is covered in white paper that says, “Coronavirus” and has two checkboxes for a negative or positive result. There is red liquid in the test tube. The test tube has a yellow cover. There is a red checkmark in the positive checkbox.
Cut to SingStar Ali singing, “People with disability, we will continue fighting you/Corona…virus.”
Cut to a still photograph of a medical professional wearing a white hazmat suit with blue lines on it. They are also wearing green goggles and blue gloves. They are pointing a thermometer to the forehead of a woman. Her hair is in a ponytail, and she is wearing silver earrings.
SingStar Ali sings, “People with disability, we will continue protecting ourselves against you.”
Singstar Ali raps, “Poverty makes it harder for people to find clean water and soap/People with disability among us who were not informed on the epidemic and preventative measures.”
Cut to a closeup shot of a Patrolman stereo.
Cut to a white, black, and brown television set with SingStar Ali strumming his yellow guitar. He sings, “Most of them do not have access to radios, TVs and other communication materials in accessible format.”
Cut to a closeup of a pair of sunglasses and a white cane on a green bench.
Cut to SingStar singing, “We found ways to fight you even if some of us ignored the measures.”
Cut to a still image of a person wearing a white hazmat suit, a blue face mask, and goggles. There is a second man fixing the first man’s hazmat suit. The second man is wearing a blue-and-white polka-dotted, button-down shirt and a white lab coat over it. The second man is wearing a blue face mask, white goggles, and a blue hair net. There is a yellow-and-black wall and a window in the background.
SingStar Ali appears again, singing, “But people with disability know that we still have many obstacles/little stature don’t even know how to get to wash their hands due to theIR HEIGHT.”
Cut to a man with dwarfism wearing an orange shirt. He is wearing a green mask and has black messenger bag slung over one shoulder. He is attempting to lift his hands into a sink to wash his hands.
Cut to SingStar Ali singing, “Inaccessible hand-washing facilities where it is difficult for the people with disabilities to use them, including little people, wheelchair users.”
There is a brief transition to a person wearing green, pink, and black sneakers. They are also wearing dark blue jeans. There is a second brief transition to SingStar Ali.
Cut to a closeup of a pair of hands pressing on a soap dispenser.
Cut to a closeup of a SingStar Ali singing, “Person with visual impairment cannot respect physical distancing properly.”
Cut to a woman who is blind holding hands with a man. The woman is wearing a green dress and using a white cane. She is also wearing a blue face mask and black sunglasses. She has her hair pulled back in a ponytail. The man holding hands with her has a blue-and-yellow shirt on with black jeans. He is wearing a pink face mask. They are both walking towards the camera.
There is a transition to Singstar Ali and then a cut to a still image of people waiting in line. They are all wearing masks. There are yellow buses to their left and a building next to the buses. In the background of this picture is a frame of one of SingStar Ali’s scenes.
Singstar Ali sings, “people with hearing impairment who can’t hear you unless they can read you what you are telling them.”
Cut to a clip of a man wearing a black face mask. He is wearing a white-and-black striped, button-down shirt, and he is pointing towards something. He is sitting on a chair. There is a white board behind him.
Cut to SingStar Ali singing, “And the mask that are there.” He covers his mouth with his hand. A transparent image of a blue mask appears on the screen.
Cut to SingStar Ali singing, “people with mental impairment challenged who are having uncontrolled movement as they wish.”
The song continues: “We know the expansion of coronavirus/Those ignoring it like they don’t know/We pushed hard but in vain.”
There is a brief transition to a still photograph of a medical professional wearing a white hazmat suit with blue lines on it. The professional is also wearing green goggles and blue gloves and holding a thermometer to the forehead of a woman. Her hair is in a ponytail, and she is wearing silver earrings.
Cut to SingStar Ali singing, “Life continued getting harder/We continued to strive/But poverty continued to be more than issue/Corona…virus/People with disability, we will continue fighting you/Corona…virus/People with disability we will continue protecting ourselves against you/We pushed hard but in vain/Life continued getting harder/We continued to strive/But poverty continued to be more than issue/Corona…virus/People with disability, we will continue fighting you/Corona…virus/People with disability, we will continue protective ourselves against you.”
End credits appear on screen. There is a “SINGSTAR” title card in white over shots of SingStar Ali from the video.
Cut to “CORONA” title card in white over a shot of a pair of sunglasses on a green bench.
Cut to black screen and “Produced by UPHLS” title card in white. “Disability Rights Advocacy Fund” logo, UPHLS logo, and words “WASH for All” in quotation marks appear on a white background.
Fade to black.
About this video Di Luar Kendali Mereka
Eka Setiawan, seorang aktivis tunanetra, mengatakan bahwa para advokat harus terus menuntut lebih banyak kesempatan profesi bagi orang Indonesia yang buta dan low vision. *Baca bersama dengan mengklik tombol cc pada pemutar YouTube Anda.
Filmmaker: Mahretta Maha
Mahretta Maha is a disability rights activist living with blindness. She is a program officer at the Association for Disability Access Elections (PPUAD) for the National Coalition of Organizations with Disabilities. Read more about Mahretta Maha
Transcript for Di Luar Kendali Mereka
Video dimulai dengan musik piano yang lambat.
Perlahan muncul Sadiah, seorang wanita Indonesia yang mengenakan jilbab hijau, duduk di sofa abu-abu dan berbicara ke kamera dalam Bahasa Indonesia: “Perkenalkan nama saya Sadiah, saya seorang disabilitas netra.”
Muncul gambar mundur Sadiah yang berlutut dan memijat kaki seorang klien yang berbaring di atas kasur abu-abu di lantai.
Muncul gambar mundur Sadiah memijat punggung klien, seorang pria Indonesia. Sulih suara Sadiah berlanjut, “Saya adalah ibu rumah tangga dan berprofesi sebagai Masseur atau juru pijat. Saya hanya memiliki tempat yang sangat sederhana.”
Muncul gambar mundur papan nama dalam Bahasa Indonesia mengiklankan Panti Pijat Tunanetra Rohim.
Muncul Sadiah yang duduk di dalam ruangan, “Sebelum pandemi saja saya sudah mengalami penurunan pendapatan.”
Muncul gambar papan dalam Bahasa Indonesia mengiklankan Panti Pijat Tunanetra Rohim. Sulih suara Sadiah berlanjut, “Misalnya kalo dulu bisa dalam satu hari saya mijat tiga atau empat pasien, untuk sekarang ini dalam satu hari satu saja atau satu minggu dapat tiga orang pasien saja itu sudah sangat beruntung.”
Muncul Sadiah berbicara, “Apalagi disaat pandemi kemarin dalam dua tahun kebelakang kemarin.”
Muncul matahari terbit di atas jalan perdagangan yang sepi. Beberapa burung terbang melintasi jalan dan hinggap di trotoar sebelah kiri.
Muncul Sadiah berbicara, “Kami para Masseur khususnya saya benar benar tidak ada pasien yang mau berkunjung ataupun memakai jasa saya atau jasa kami para massier tunanetra.”
Muncul close-up seorang pria Indonesia yang menekan tombol pada speaker besar yang diikatkan di dadanya sementara sebuah lagu diputar dari speaker. Dia berdiri di sebuah ruangan.
Muncul Sutoro, pria dengan speaker, bernyanyi dengan mikrofon yang kabelnya melingkari lehernya. Sutoro berambut abu-abu dan mengenakan kemeja merah dan emas. Dalam Bahasa Indonesia, suaranya berkata, “Nama Saya Sutoro.”
Muncul papan nama biru-putih dalam Bahasa Indonesia yang mengiklankan Panti Pijat Tunanetra Binaan Suku Dinas Sosial Jakarta Barat. Speaker Sutoro memainkan sebuah lagu di latar belakang.
Muncul Sutoro yang sedang memijat kaki klien yang berbaring di atas meja pijat warna warni. Sulih suara Sutoro berlanjut, “Dan profesi saya adalah juru pijat atau masseur.” Musik dari speaker Sutoro perlahan berganti menjadi musik piano yang emosional.
Muncul Sutoro yang berdiri di depan dinding putih dan berbicara ke kamera: “Namun karena situasi dan kondisi.”
Muncul Sutoro berkacamata hitam dan menggunakan tongkat putih berjalan di tepi jalan yang sibuk. Sebuah speaker diikatkan di dadanya, dan beberapa pengendara sepeda motor melaju di jalan. Sulih suara Sutoro berlanjut, “Saya akhirnya ganti profesi atau pindah profesi.”
Muncul Sutoro yang berdiri di dalam ruangan, “Yaitu kalo pagi saya pergi ke pasar untuk menjalankan aktivitas untuk menjadi seniman jalanan atau ngamen.”
Muncul Sutoro bernyanyi di mikrofonnya sambil menyesuaikan speakernya di sebuah ruangan.
Muncul foto seorang wanita Indonesia yang mengenakan jilbab hijau dan membawa banyak kantong kerupuk di sisi jalan. Seorang anak laki-laki Indonesia, mengenakan penutup topi baseball, berjalan bersamanya di sebelah kiri. Mobil-mobil dan pengendara sepeda motor melintas di jalan. Suara sulih Sutoro melanjutkan, “Kalo sore hari saya berjualan kerupuk.”
Muncul gambar mundur Sutoro memijat kaki klien di atas meja pijat warna warni. Suaranya berlanjut, “Keliling karena profesi pijat tidak mencukupi kebutuhan sehari hari.”
Muncul seorang pemijat yang merupakan seorang wanita Indonesia berambut hitam yang diikat ke belakang. Dia memijat kaki seorang wanita kulit putih di atas meja pijat mewah yang menghadap ke laut. Klien tersenyum saat menerima pijatannya.
Muncul gambar close-up seorang pemijat yang sedang memijat kaki klien. Sutoro melanjutkan, “Karena sekarang sudah banyak sekali orang – orang liat pada terjun memijat.”
Muncul Sutoro, “Dan sekarang banyak sekali tempat – tempat pijat yang tempatnya lebih mewah karena dia punya uang.”
Muncul wanita Indonesia yang sedang memijat punggung klien lain di atas meja pijat. Kliennya adalah seorang wanita kulit putih yang mengenakan bikini. Matahari terbenam di atas pepohonan dan sebuah bungalow di latar belakang. Sutoro melanjutkan, “Sehingga profesi pijat dari tunanetra itu tersisih.”
Muncul gambar mundur sebuah pasar yang sibuk di Jakarta dan pengendara sepeda motor yang parkir di dekat kios-kios pasar. Dua gedung tinggi kembar berada di latar belakang. Sulih suara Sutoro berlanjut, “Maka dengan terpaksa saya beralih profesi.”
Muncul Sutoro berbicara, “Menjadi seniman jalanan itu sebenarnya tantangannya cukup berat.”
Muncul beberapa pejalan kaki dan pengendara sepeda motor yang melewati seorang pengamen, yang buta, di pasar yang sibuk. Pengamen itu, seorang pria Indonesia dengan rambut pendek beruban, memegang tongkat putih. Sebuah mikrofon yang kabelnya melingkari lehernya, dan sebuah speaker diikatkan di dadanya. Pengendara sepeda motor membunyikan klakson dan pejalan kaki berbicara di latar belakang. Sulih suara Sutoro berlanjut, “Kalo di pasar kenndalanya yaitu yang jelas lalu lalang motor.”
Muncul Sutoro yang berbicara, “Jadi kita harus bener hati hati karena lalu lalang motor itu cukup banyak sekali yang mondar mandir.”
Muncul sang pengamen, yang buta, di pasar yang ramai.
Muncul penjual kerupuk, seorang wanita Indonesia yang mengenakan jilbab krem, duduk di pinggir jalan yang ramai dengan banyak kantong kerupuk. Sang penjual makan dari salah satu kantong kerupuk. Seorang gadis Indonesia berambut hitam panjang duduk di sebelah wanita tersebut sementara seorang pengendara sepeda dan pengendara sepeda motor melintas di jalan.
Muncul penjual kerupuk lainnya, seorang wanita Indonesia dengan rambut hitam yang diikat ke belakang, duduk di sisi jalan yang sibuk. Beberapa kantong kerupuk tergantung pada tongkat coklat di depannya, dan beberapa pengendara sepeda motor melintas di jalan. Sulih suara Sutoro berlanjut, “Kalau jualan kerupuk sekarang tidak hanya tunanetra yang jualan, sekarang orang liat pun jualan.”
Muncul penjual kerupuk kedua yang sedang duduk di pinggir jalan yang ramai di malam hari. Mobil-mobil dan pengendara sepeda motor lalu lalang di jalan. Sulih suara Sutoro berlanjut, “Jadi memang semakin sepi bahkan saya sering buang karena tidak terjual.”
Muncul Sutoro yang berbicara, “Sehingga melempem kerupuk itu akhirnya terbuang.”
Muncul seorang pengamen, seorang pria Indonesia berambut hitam pendek, bernyanyi di mikrofon dari tepi jalan pada malam hari dan memegang tongkat putih. Pengendara sepeda motor melintas di jalan, dan suara-suara lalu lintas menjadi latar belakangnya.
Muncul Eka Setiawan, seorang pria paruh baya Indonesia berambut hitam pendek. Setiawan mengenakan kemeja abu-abu, duduk di depan tembok kuning, dan berbicara kepada kamera dalam Bahasa Indonesia: “Saya Eka Setiawan.”
Muncul Setiawan mengenakan topi sholat putih, headphone kecil putih, dan berbicara melalui pengeras suara di sebuah pertemuan besar. Sebagian besar wanita pada pertemuan tersebut mengenakan jilbab hitam, dan sebagian besar pria berambut hitam pendek. Seorang wanita berambut hitam, dan seorang pria mengenakan topi sholat biru-putih. Semua peserta rapat memakai masker wajah. Sulih suara Setiawan berlanjut, “Saya seorang aktifis tunanetra yang memperjuangkan hak – hak penyandang disabilitas.”
Muncul Setiawan yang berdiri di depan tembok kuning, “Sejak Indonesia meratifikasi UN-CRPD di tahun 2011 dengan Undang – undang 19 tahun 2011 yang kemudian domestisasi Undang – undang penyandang disabilitas, Indonesia menerbitkan undang – undang disabilitas pada tahun 2016.”
Muncul gambar layar teks hitam di layar putih bertuliskan, “PRESIDEN REPUBLIK INDONESIA | UNDANG-UNDANG REPUBLIK INDONESIA NOMOR 8 TAHUN 2016 TENTANG PENYANDANG DISABILITAS,” dalam Bahasa Indonesia.
Muncul Setiawan yang berbicara, “Sampai dengan hari ini kondisi yang ada masih menempatkan penyandang disabilitas menjadi.”
Muncul seorang pengamen, seorang pria Indonesia yang mengenakan topi baseball hitam. Pria itu bernyanyi dengan mikrofon yang kabelnya melingkar di lehernya, dan sebuah speaker yang diikatkan di dadanya. Dia berjalan dari mobil ke mobil di jalan yang sibuk, dan suara lalu lintas menjadi latar belakangnya. Setiawan melanjutkan, “Khususnya tunanetra menjadi yang sulit dalam menjalankan profesinya.”
Muncul Sadiah yang sedang memijat kaki seorang klien di atas kasur abu-abu.
Muncul Setiawan yang berbicara, “Dan kebetulan sebagian besar tunanetra masih berprofesi sebagai juru pijat.”
Muncul Setiawan berbicara, “Di situasi saat ini profesi juru pijat bagi tunanetra kelihatannya sudah bukan sebagai profesi yang menjanjikan.”
Muncul Sutoro memijat kaki klien di atas meja pijat warna-warni.
Muncul gambar mundur dari handuk putih di atas meja pijat mewah di sebuah panti pijat. Lampu-lampu hijau kecil berjajar di salah satu bagian lantai di depan meja pijat.
Muncul Setiawan berbicara, “Profesi juru pijat ini sudah digeluti oleh banyak kalangan non disabilitas yang tentunya kemasannya bisa jauh lebih baik dan dengan modal yang jauh lebih kuat sehingga menempatkan teman – teman disabilitas tunanetra menjadi tersisihkan dalam profesi pijatnya.”
Mucul seorang pengamen, seorang pria Indonesia dengan rambut hitam dengan gaya rambut ditarik ke belakang, bernyanyi di mikrofon di jalan yang sibuk di sebuah pasar. Pejalan kaki dan pengendara sepeda motor melewatinya, dan musik diputar dari pengeras suara.
Muncul seorang wanita Indonesia, mengenakan jilbab krem, berhenti untuk memberikan uang kepada seorang pengamen di pasar yang sibuk. Sang pengamen, seorang pria Indonesia, mengenakan topi biru dan menggunakan tongkat putih. Seorang pengendara sepeda motor melintas di dekat pengamen, dan beberapa orang di pasar mengenakan masker wajah. Sulih suara Setiawan berbicara, “Mau tidak mau teman – teman tunanetra alih profesi.”
Muncul Setiawan yang berbicara, “Saya yakin betul teman – teman tunanetra memahami pekerjaan – pekerjaan yang mereka lakukan ini adalah pekerjaan yang beresiko.”
Muncul seorang wanita Indonesia yang mengenakan jilbab coklat dan memegang tongkat putih di jalan yang sibuk. Dia bernyanyi pada mikrofon yang terpasang di lehernya, dan sebuah speaker diikatkan ke dadanya. Sulih suara Setiawan berlanjut, “Tetapi tidaklah banyak pilihan profesi yang bisa dilakukan oleh teman – teman tunanetra. Bahwa perlu terus dilakukan advokasi.”
Muncul Setiawan yang berbicara, “Harapan yang bisa disampaikan kesemua pihak bahwa kesempatan buat teman – teman penyandang disabilitas atau tunanetra sebagai juru pijat memang harus dibuka seluas luasnya.”
Muncul seorang wanita Indonesia yang mengenakan jilbab putih. Dia menghentikan seorang pengamen, seorang pria Indonesia berambut hitam dengan gaya rambut ditarik ke belakang, untuk memasukkan uang ke dalam tasnya di sebuah pasar yang ramai. Musik diputar dari speakernya.
Muncul Setiawan berbicara, “Dan sebetulnya bisa dikelola lebih baik misalnya di dunia pariwisata, dunia perhotelan.”
Muncul gambar udara dari sebuah hotel mewah di Indonesia. Sebuah kolam besar dan pepohonan mengelilingi hotel.
Muncul Setiawan berbicara, “Sehingga tunanetra lebih memiliki peluang yang lebih baik di profesinya sebagai juru pijat.”
Memudar ke teks hitam dengan garis tepi kuning di layar hitam yang bertuliskan, “Copyright – @2022 PPUA Disabilitas. Semua hak cipta dilindungi undang-undang.”
Memudar ke teks hitam dengan garis tepi kuning pada layar hitam yang bertuliskan, “Dibuat dengan dukungan dari Proyek Keadilan Disabilitas dan Dana Hak Disabilitas.” Logo Proyek Keadilan Disabilitas adalah huruf “D” besar berwarna kuning dengan tombol putar hitam di tengahnya untuk menandakan video bercerita, dan tulisan teks putih yang berarti “Proyek Keadilan Disabilitas” di kiri bawah. Logo Disability Rights Fund – kotak putih dengan teks hitam bertuliskan, “Disability Rights Fund” – berada di kanan bawah layar.
About this video Hak untuk Memilih
Warga negara Indonesia penyandang disabilitas secara historis menghadapi banyak hambatan untuk terlibat dalam pemilu. *Video termasuk deskripsi audio. *Baca bersama dengan mengklik tombol cc pada pemutar YouTube Anda.
Filmmaker: Mahretta Maha
Mahretta Maha is a disability rights activist living with blindness. She is a program officer at the Association for Disability Access Elections (PPUAD) for the National Coalition of Organizations with Disabilities. Read more about Mahretta Maha
Transcript for Hak untuk Memilih
Video dimulai dengan Ariani Soekanwo, seorang perempuan Indonesia berusia 76 tahun yang memiliki penglihatan rendah. Ibu Ariani adalah pendiri PPUA Disabilitas (Pusat Pemilihan Umum Akses Warga Negara dengan Disabilitas). Beliau mengenakan jilbab oranye. Empat bingkai foto, termasuk penyandang disabilitas di bilik suara, digantung di dinding di belakangnya. Musik berirama cepat dari keyboard dan gitar diputar di latar belakang sepanjang durasi video. Ibu Ariani, berbicara dalam Bahasa Indonesia, berkata, “Nama saya Ariani Soekanwo.”
Muncul Ibu Ariani Soekanwo sedang berbicara di depan mikrofon dalam sebuah pertemuan. Beliau mengenakan jilbab kuning.
Muncul Ibu Ariani Soekanwo sedang berbicara di di depan di sebuah podium. Dia mengenakan jilbab coklat. Pada podium ada logo perisai bertuliskan, “KOMISI PEMILIHAN UMUM.” Seorang pria dengan satu tangan berada di sebelah kiri, dan pria lain berada di sebelah kanan. Di kiri dan kanan latar belakang terdapat dua potret presiden Indonesia memakai seragam.
Muncul foto Ibu Ariani Soekanwo tersenyum ke arah kamera. Dia memegang sebuah buku. Di sebelah kiri, seorang pria melihat ke kamera. Di sebelah kanan, seorang pria tersenyum ke arah kamera dan memegang buku juga.
Muncul Ibu Ariani Soekanwo berbicara di depan bingkai foto. “Saya sudah terlibat dalam gerakan disabilitas sejak saya masih mahasiswa.”
Muncul gambar logo PPUA di layar putih. Logo PPUA merupakan gambar kotak suara berwarna biru dengan teks biru bertuliskan, “PUSAT PEMILU AKSES DISABILITAS” (Pusat Pemilihan Akses Disabilitas). Empat ikon aksesibilitas berada di bagian bawah kotak.
Muncul Ibu Ariani Soekanwo berbicara di depan bingkai foto. “Pusat Pemilihan Umum Akses Warga Negara Penyandang Cacat (PPUA) didirikan pada tanggal 24 April 2002.”
Muncul foto seorang pria yang berbicara di podium terbuka. Pada podium ada logo perisai bertuliskan, “KOMISI PEMILIHAN UMUM.” Di sebelah kiri, seorang pria melakukan penerjemahan bahasa isyarat. Sebuah spanduk besar di latar belakang bertuliskan, “PUSAT PEMILIHAN UMUM AKSES PENYANDANG CACAT/ [PPUA PENCA
Muncul Ibu Ariani Soekanwo berbicara, “Sebelum PPUA, undang-undang pemilihan umum sangat diskriminatif terhadap penyandang disabilitas.” Muncul foto seorang perempuan yang menjulurkan tangan kirinya ke atas untuk memasukkan surat suara ke dalam kotak suara putih. Huruf-huruf hitam bertuliskan, “KPU” ada di kotak suara. Seorang perempuan lain berada di latar belakang.
Muncul gambar tangkapan layar sebuah artikel berita. Judul berita tersebut berbunyi, “PKU: Orang Gila tak Punya Hak Pilih.” Di bawah judul berita, tanggal publikasi tertulis, “Selasa 12 Feb 2019 07:03 WIB.” Di sisi kiri tangkapan layar terdapat beberapa ikon media sosial. Artikel tersebut menampilkan gambar seorang pria. Di sebelah kanannya ada tiga orang lainnya.
Muncul Ibu Ariani Soekanwo berbicara, “Dalam menggunakan hak untuk memilih, dipilih, dan menjadi penyelenggara pemilu.”
Muncul gambar seorang pria di kursi roda. Dia di sebelah meja berwarna coklat. Di meja itu, duduk seorang pria dan seorang wanita berjilbab hitam. Sebuah papan nama di atas meja bertuliskan, “KPPS 5.” Seorang pria lain memegang pegangan kursi roda. Beberapa pria lain, memegang kamera foto atau video, berada di latar belakang.
Muncul Ibu Ariani Soekanwo yang berbicara, “Setelah sekitar 15 tahun perjuangan PPUA, penyandang disabilitas saat ini memiliki hak untuk memilih.”
Muncul foto Ibu Arinai Soekanwo yang sedang berpose untuk berfoto. Dia mengenakan jilbab hijau. Ada empat pria di sebelah kanan dan enam pria di sebelah kiri. Tiga pria di sebelah kanan Soekanwo dan dua pria di sebelah kiri Soekanwo memegang kertas kuning dalam bingkai emas. Di latar belakang, potret presiden Indonesia digantung di dinding.
Muncul gambar zoom-out dari spanduk “KOMISI PEMILIHAN UMUM REPUBLIK INDONESIA” besar yang bertuliskan, “SOSIALISASI PENDIDIKAN PEMILIH DAN SIMULASI PEMILU 2019 BAGI PENYANDANG DISABILITITAS / JAKARTA, 14 FEBRUARI 2019.” Sebuah podium di depan spanduk itu memuat teks yang bertuliskan, “PARTAI POLITIK PERSERTA PEMILU 2019.”
Ibu Ariani melanjutkan, “Langsung, umum, bebas, rahasia, jujur, dan adil.” Muncul foto dua orang pria di sebuah meja. Ada tumpukan surat suara dengan kotak-kotak biru, merah, hijau, dan kuning di atasnya. Seorang pria di meja itu berdiri. Selembar kertas putih dengan teks hitam yang melekat pada tali putih ada di lehernya. Pria yang berdiri itu memberi pria lain yang tidak berlengan sebuah surat suara dengan garis kuning di bagian atas. Pria tanpa lengan meraih ujung depan surat suara dengan mulutnya. Pria lain berdiri di sebelah kiri pria tanpa lengan. Pria ketiga yang duduk di meja sedang menulis di surat suara, di sisi kanan foto. Sebuah pintu di latar belakang dengan selembar kertas putih di atasnya bertuliskan, “KELUAR.”
Muncul foto close-up seseorang yang membaca surat suara dalam huruf Braille. Beberapa foto dari beberapa kandidat ada di surat suara.
Muncul rekaman seorang yang membantu seorang wanita tunanetra. Wanita itu mencoblos surat suara di kotak suara putih yang bertuliskan “KPU” dalam teks hitam. Wanita itu mengenakan jilbab coklat dan kacamata hitam. Yang membantu mengenakan taqiyah putih. Pria kedua berdiri di dekat yang membantu dan wanita yang buta. Orang-orang ada yang berdiri dan duduk di belakang mereka. Beberapa mengambil foto, dan yang lainnya membuat rekaman video. Kilatan kamera berbunyi di latar belakang.
Muncul Ibu Ariani Soekanwo berbicara, “Mereka juga telah bisa mendapatkan hak untuk dipilih sebagai anggota parlemen dan juga untuk menjadi gubernur dan presiden serta walikota.”
Muncul foto seorang kandidat sedang memegang kruk sedang berkampanye. Logo bulat berwarna merah, biru, dan putih ada di kanan atas kemejanya. Kata-kata dalam teks merah, meniru tampilan perangko, bertuliskan “CALEG DISABILITAS.” Teks biru di sebelah kiri bertuliskan, “Untuk Indonesia Sejahtera,” “No. 4.” “IRPAN RUSTANDI, A. Md / CALEG DPRD PROPINSI JAWA BARAT DAPIL I KOTA BANDUNG SAN CIMAHI.” Teks biru di kiri atas bertuliskan, “No. 9” dengan logo bulat berwarna merah, biru, dan putih di bawahnya. Kata-kata di bawah logo dalam warna hitam dan coklat masing-masing berbunyi, “PARTAI PERINDO” dan “PERSATUAN INDONESIA”. Ikon dan tautan media sosial ada di bagian bawah foto.
Muncul gambar kampanye lainnya dari seorang wanita di kursi roda. Dia mengenakan hijab merah-putih. Jempol kirinya ke atas dan tangan kanannya bertumpu pada pahanya. Teks yang dapat dibaca di bawah logo di sebelah kanan bertuliskan, “No. 7 MEITA ELVI SORAYA SALLY,” “CALEG DPR RI,” “DAPRIL 9 JAWA TENGAH,” dan “[KAB, BREBES, KAB, TEGAL, KOTA TEGAL]” Teks di bagian bawah bertuliskan, “BEJUANG TANPA BATAS MEMBANGUN TOLERANSI/ DALAM KEBERAGAMAN UNTUK INDONESIA RAYA.”
Muncul foto gedung DPR RI berwarna putih dengan teks di bagian luar bertuliskan, “MAJELIS PERMUSYAWARATAN RAKYAT/ DEWAN PERWAKILAN RAKYAT/ DEWAN PERWAKILAN DAERAH.” Mobil-mobil diparkir di dekat gedung. Terdapat kolam dengan air mancur di sisinya berada di sebelah kiri gedung dan tempat parkir.
Muncul gambar tangan yang menjatuhkan surat suara ke dalam kotak suara putih. Bendera Indonesia ada di latar belakang. Di kiri bawah, teks bertuliskan, “PILKADA 2020.” Di kanan bawah terdapat dua gambar orang berseragam dalam bingkai masing-masing. Ada tanda tanya di kepala masing-masing.
Muncul Ibu Arinai Soekanwo berbicara, “Dan terbuka kesempatan untuk menjadi anggota penyelenggara pemilu, anggota Bawaslu dan KPU.” Muncul foto logo “BAWASLU” di sebelah kanan. Tulisan di bagian bawah berbunyi, “Seleksi Calon Anggota KPU dan Bawaslu Masa Jabatan 2022 – 2027.” “Logo KOMISI PEMILIHAN UMUM berbentuk perisai ada di sebelah kiri.
Ibu Ariani Soekanwo melanjutkan, “Jadi sekarang anak muda penyandang disabilitas ingin aktif dalam memahami demokrasi.” Muncul foto tiga pria di kursi roda yang berpose untuk foto. Di belakang tiga pria di kursi roda, tujuh orang lagi berpose untuk foto. Di tengah baris kedua, Ibu Ariani berpose di depan kamera. Dia mengenakan jilbab biru. Muncul Ibu Ariani yang sedang berbicara.
Muncul seorang perempuan berkursi roda. Dia sedang melipat surat suaranya pada sebuah bilik suara. Kotak suara yang setengah terbuka bertuliskan, “KPU,” dalam teks hitam di atas meja bertaplak. Lampu Kamera berkilau di latar belakang. Suara Ibu Arini berlanjut, “Dan dapat berpartisipasi dalam menggunakan hak pilihnya.”
Muncul Ibu Arini Soekanwo berbicara, “Karena ini sekarang sudah terbuka, walaupun belum mudah, tapi pintunya sudah terbuka.”
Muncul close-up seorang pria yang memegang berbagai surat suara dan berpose di depan kamera. Seorang wanita mengenakan jilbab oranye berdiri di belakangnya. Dia memegang teleponnya. Sebuah kotak suara “KPU” diletakkan di atas meja di sebelah kanan. Beberapa orang duduk, dan yang lainnya berjalan-jalan di latar belakang.
Muncul Ibu Ariani Soekanwo berbicara.
Potongan gambar seorang pria yang berpose untuk foto di tempat pemungutan suara. Dia mengangkat jari kelingking kirinya ke atas; ujung jarinya tertutup tinta hitam. Seorang pria lain dengan disabilitas fisik memegang surat suara di belakangnya. Seorang pria ketiga menggerakkan pria penyandang disabilitas fisik ke kanan. Beberapa orang berdiri, dan yang lainnya duduk di meja di latar belakang atau mengambil foto atau merekam video. Lampu kamera berkedip dan suara klik di latar belakang.
Kemudian Ibu Ariani Soekanwo berbicara, “Jadi kita harus berani masuk untuk terlibat sebagai penyelenggara pemilu dan anggota parlemen.”
Muncul gambar seorang wanita di kursi roda sedang memberikan suara di bilik suara. Seorang wanita lain di kursi roda di sebelah kanan memberikan suara. Di depan bilik suara, ada beberapa orang berdiri dan ada yang duduk.
Muncul grafik kotak suara abu-abu di layar putih. Tanda centang merah berada di tengah-tengah ikon orang di kursi roda.
Muncul foto seorang pria yang duduk di tempat pemungutan suara. Tiga kotak suara putih di depannya masing-masing bertuliskan, “KPU” dalam teks hitam.
Muncul Ibu Ariani Soekanwo berbicara, “Maka para pejabat dan calon, mereka yang akan memegang kekuasaan, akan memperhatikan pemenuhan hak-hak disabilitas.”
Muncul bagian luar gedung DPR. Dua gedung tinggi berada di sebelah kanannya. Sebuah gedung hijau rendah dan bundar berada di tengah. Anak tangga mengarah ke bagian gedung hijau itu.
Muncul Ibu Ariani Soekanwo berbicara, “Buatlah program dan buatlah anggaran untuk kebutuhan disabilitas.”
Muncul foto lembaran biru di trotoar bertuliskan, “#MenujuDisabilitasMerdeka.” Ikon seseorang di kursi roda, dua pria dan satu wanita, bergandengan tangan.
Muncul foto close-up selembar kertas putih yang ditempelkan pada kemeja kotak-kotak oranye, putih, dan hitam. Teks hitam di atas kertas putih bertuliskan, “MEMBANGUN INDONESIA INKLUSIF DISABILITAS.”
Muncul seorang pria tunanetra, mengenakan kacamata hitam dan menggunakan tongkat putih di sebuah meja. Meja penuh dengan tumpukan surat suara. Pria itu berada di tempat pemungutan suara. Seorang yang membantunya ada di sebelah kanan memegang punggung pria itu. Yang membantu itu juga memegang tongkat putih. Seorang wanita yang mengenakan jilbab krem duduk di meja.
Muncul seorang pria penyandang disabilitas fisik yang menggunakan kruk saat ia berjalan di tempat pemungutan suara di dekat beberapa kotak suara yang diletakkan di atas meja. Beberapa orang duduk di meja hijau, beberapa berdiri, dan yang lainnya mengambil foto atau rekaman video. Kilatan kamera berbunyi di latar belakang.
Muncul bidikan close-up pria lain dengan disabilitas fisik yang bergerak perlahan menuju kotak suara. Kamera berkedip di latar belakang.
Muncul Ibu Arinai Soekanwo yang berbicara, “Jika kita tidak menunjukkan eksistensi kita, maka hak-hak kita akan diabaikan.”
About this video Perawatan Terjangkau
Jaminan kesehatan tidak selalu terjamin bagi penyandang disabilitas Indonesia. *Video termasuk deskripsi audio. *Baca bersama dengan mengklik tombol cc pada pemutar YouTube Anda.
Filmmaker: Sri Sukarni
Sri Sukarni is chairperson of the Indonesia Association of Disabled Women (HWDI)’s branch in the province of West Nusa Tenggara. Read more about Sri Sukarni
Transcript for Perawatan Terjangkau
Video dimulai dengan bidikan udara jalan raya dan tugu biru-putih di kota Mataram di Kabupaten Lombok Barat, Indonesia. Audio mobil yang sedang melaju kencang diputar di latar belakang. Musik piano lembut juga diputar di latar belakang.
Memudar ke teks hitam pada layar kuning yang bertuliskan, “Selama dekade terakhir, Indonesia telah mereformasi sistem asuransi kesehatan nasionalnya untuk memberikan jaminan kesehatan bagi seluruh rakyat Indonesia.”
Memudar ke teks hitam pada layar kuning yang sama yang berbunyi, “Namun, penyandang disabilitas Indonesia masih belum memiliki akses yang sama terhadap layanan kesehatan.”
Memudar ke teks hitam pada layar kuning yang bertuliskan, “Sustia Rini adalah seorang perempuan penyandang disabilitas berusia 37 tahun dan ibu dari empat anak. Ketika ia pertama kali mengajukan permohonan asuransi kesehatan wajib sebagai pembayar individu, ia dikenakan biaya $8 per bulan oleh Badan Penyelenggara Jaminan Sosial (BPJS) Kesehatan Indonesia.”
Memudar ke teks hitam pada layar kuning yang bertuliskan, “Tanpa penghasilan tetap, dia berjuang untuk melakukan pembayaran.”
Memudar ke Sustia Rini, seorang wanita Indonesia yang mengenakan jilbab multi-warna, berdiri di sebuah ruangan dan berbicara kepada kamera dalam Bahasa Indonesia: “Pada tahun 2013 saya membuat kartu BPJS Mandiri dengan mengambil [tingkat layanan] Kelas II.” Sebuah tirai merah dan lemari berisi barang-barang kantor berada di belakangnya.
Potongan ke bagian luar kantor kesehatan masyarakat Lombok Barat. Sebuah mobil terparkir di pintu masuk kantor. Sebuah kursi merah dan meja coklat berada di samping pintu masuk. Seorang pria berjalan melintasi kantor.
Terpotong ke sebuah papan nama di bagian luar kantor kesehatan masyarakat yang bertuliskan, “SEKRETARIAT KOPERASI BHAKTI HUSADA, DISTRIK KESEHATAN LOMBOK BARAT,” dalam Bahasa Indonesia. Sebuah poster informasi “Kementerian Kesehatan Republik Indonesia” dalam Bahasa Indonesia berada di sebelah kanan.
Dipotong dengan Rini yang berbicara di dalam ruangan. “Cicilannya 42.000 [rupiah]. Saat itu, saya dan suami serta anak ketiga saya masuk dalam BPJS Mandiri.”
Dipotong dengan teks hitam di layar kuning yang bertuliskan, “Akhirnya, Rini berhenti melakukan pembayaran ke BPJS. Semua orang di keluarganya sehat, jadi dia tidak melihat perlunya asuransi kesehatan. Kemudian salah satu anaknya sakit, dan dia tidak punya cara untuk membayar tagihan rumah sakit.”
Potongan gambar mobil-mobil yang melintas di jalan yang dipenuhi pepohonan di Mataram. Seorang pria duduk di salah satu dari beberapa bangku coklat di trotoar. Beberapa orang berlalu lalang di trotoar. Voiceover Rini melanjutkan, “Pada tahun 2015, anak pertama saya sakit dan membutuhkan perawatan di rumah sakit.”
Dipotong ke Rini yang sedang berbicara.
Memudar ke teks hitam pada layar kuning yang bertuliskan, “Rini mengajukan permohonan untuk mendapatkan layanan kesehatan gratis yang dikenal sebagai PBI. Dia ditolak karena beberapa alasan.”
Terpotong Rini berbicara, “Dinas Kesehatan Kota Mataram menjelaskan bahwa untuk tahun 2015, tidak ada program dari PBI di wilayah Kota Mataram.”
Dipotong ke pan shot Rini berjalan menuju pintu masuk depan Laboratorium Kesehatan Daerah. Dia mengenakan jilbab hitam. Beberapa mobil dan motor terparkir di samping laboratorium.
Memudar ke teks hitam pada layar kuning yang mengatakan, “Karena Rini telah berhenti melakukan pembayaran BPJS sebagai pembayar perorangan, dia juga berhutang kepada pemerintah. Dia diberitahu bahwa sampai dia melunasi hutangnya, dia tidak akan memenuhi syarat untuk PBI.”
Memudar ke teks hitam pada layar kuning yang bertuliskan, “Pada bulan Juni, Projek Keadilan Disabilitas mengunjungi Dinas Kesehatan Kabupaten Lombok Barat, di mana Perawat H. Zuljipli, sekretaris Dinas Kesehatan Kabupaten Lombok Barat, menjelaskan bahwa Rini keliru.”
Musik piano yang lembut bertransisi ke musik piano yang ceria untuk sisa video.
Memudar ke teks hitam pada layar kuning yang bertuliskan, “Dinas Kesehatan telah mengubah kebijakannya pada tahun 2020. Sekarang siapa pun yang membutuhkan perawatan kesehatan gratis dapat menerimanya apakah mereka berhutang atau tidak.”
Dipotong ke sebuah papan nama hitam-coklat di sisi jalan yang sibuk. Papan nama itu bertuliskan, “PEMERINTAH KABUPATEN LOMBOK BARAT / KANTOR KESEHATAN KABUPATEN. LOMBOK BARAT” dalam Bahasa Indonesia.
Potongan ke bagian luar kantor kesehatan masyarakat Lombok Barat. Sebuah kursi merah dan meja coklat berada di pintu masuk. Dua orang duduk di meja resepsionis.
Dipotong ke Nurse H. Zuljipli, seorang pria Indonesia, duduk di sebuah kantor dan berbicara kepada kamera dalam Bahasa Indonesia: “Untuk menjawab pertanyaan Anda tadi terkait program BPJS PBI di Lombok Barat, itu adalah bentuk kehadiran dan dukungan untuk masyarakat Lombok Barat.” Sebuah lemari coklat yang ditumpuk dengan kertas-kertas dan binder berada di latar belakang.
Dipotong menjadi empat pria dan empat wanita yang bertemu di sekitar meja panjang berwarna coklat di kantor kesehatan Lombok Barat. Para perempuan mengenakan jilbab.
Dipotong Zuljipli yang berbicara di kantor, “Tercatat dia punya banyak hutang dan tidak mampu membayarnya, tapi ketika dia sakit, butuh pembiayaan, butuh pelayanan, dia diakomodir. Dia bisa dialihkan [ke layanan kesehatan gratis PBI] statusnya tidak mengharuskan dia membayar hutang dulu, tapi tetap dianggap sebagai hutang [kepada pemerintah].”
Potongan poster informasi “Kementerian Kesehatan Republik Indonesia” dalam Bahasa Indonesia di sebuah kantor kesehatan.
Dipotong ke tanda di bagian luar kantor kesehatan yang bertuliskan, “BIDANG SUMBER DAYA KESEHATAN” dalam Bahasa Indonesia.
Terpisah, Zuljipli berbicara, “Ini ketika peraturan datang untuk mengizinkannya, kami telah melakukannya sejak 2020. Masyarakat yang dulunya mandiri, meskipun memiliki hutang karena tidak membayar premi, kami masih bisa melayani mereka.”
Dipotong dengan Rini berjalan ke arah seorang wanita berjilbab putih di meja resepsionis Dinas Kesehatan Lombok Barat. Dia duduk di sebuah kursi. Seorang pria di meja resepsionis menempati kursi lain.
Memudar ke teks hitam pada layar kuning yang bertuliskan, “Sekarang Rini dan warga Lombok Barat lainnya sedang dalam proses pengajuan untuk mendapatkan layanan kesehatan gratis.”
Dipotong ke Rini tersenyum dan berbicara ke kamera, “Saya sangat senang karena bisa membuat BPJS PBI tanpa membayar tunggakan.” Rambut hitam Rini ditata dengan gaya rambut ditarik ke belakang.
Memudar ke teks hitam dengan garis tepi kuning pada layar hitam yang bertuliskan, “Copyright – @2022 HWDI. Semua hak cipta dilindungi undang-undang.”
Memudar ke teks hitam dengan garis tepi kuning pada layar hitam yang bertuliskan, “Dibuat dengan dukungan dari Disability Justice Project dan Disability Rights Fund.” Logo Disability Justice Project adalah huruf “D” besar berwarna kuning dengan tombol putar hitam di tengahnya untuk menandakan video storytelling, dan teks putih bertuliskan “Disability Justice Project” di kiri bawah. Logo Disability Rights Fund – kotak putih dengan teks hitam bertuliskan, “Disability Rights Fund” – berada di kanan bawah layar.
About this video A Place Where We Belong
Myths and superstitions about persons with albinism put them at greater risk during COVID-19. OIPPA is fighting against these stigmas and for the inclusion of persons with albinism throughout Rwanda.
Filmmaker: Thacien Biziyaremye
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. Read more about Thacien Biziyaremye
Transcript for A Place Where We Belong
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
About this video Disability Inclusion Music Video
Dancing through the streets of Zambia, R&B singer John Chiti encourages persons with disabilities to take precautions during the pandemic and says everyone is impacted, whether they have been infected or not.
Filmmaker: John Chiti
R&B singer John Chiti is executive director of the Albinism Foundation of Zambia (AFZ). The musician has produced two songs about the coronavirus to raise awareness about its impact on people with disabilities. Read more about John Chiti
Transcript for Disability Inclusion Music Video
Black screen with the words “Chesire Homes Society of Zambia” in big white letters. Upbeat music starts. Blurred video of someone with albinism walking and the word “Presents” pops on the screen in white letters. *Voiceover* “Chesire Homes Society of Zambia with support from the Liliane Foundation.” The words “John Chiti” pop on the screen in white letters as video of the person walking continues. Cut to a closeup of the person with a navy-blue shirt walking during daylight. He is bald and wearing dark sunglasses. Someone starts to sing. “Oooooh, yeah, yeah, yeah, yeah / It’s a D line production.” The person, John Chiti, begins to sing and dance. “Live in one big eye / Disability inclusion, yeah / Disability inclusion, hey / Disability inclusion/Disability inclusion, hey / Live in a one big eye…”
People are sitting outdoors. Some are in wheelchairs, and others are sitting with their babies, enjoying the sunlight. Chiti continues to dance in different locations: office, around a swimming pool, in the streets. A sign language interpreter signs some of the lyrics. Chiti continues to sing: “Live in one big eye / Disability inclusion, yeah / Disability inclusion, hey / Disability inclusion / Disability inclusion, hey / Live in a one big eye / All we want is inclusion / Disability inclusion…hey / Live in one big eye / We are al living in global health pandemic, yeah / Coronavirus is here / And everyone is concerned / If you are not infected, then you are affected / Rising numbers of infections, keep us all affected / That’s why, we have put up all these measures / Wash your hands, wash your hands / Social distance, social distance / Wear a mask, wear a mask / Please stay at home / Wash your hands, wash your hands / Social distance / Yeahh.” This time, Chiti is wearing a half-sleeve maroon-colored shirt. He sings joyfully outside: “Disability inclusion / Disability inclusion, hey / Disability inclusion / Disability inclusion, hey / Live in a one big eye.”
“Disability inclusion, yeah / Disability inclusion, hey / Disability inclusion / Disability inclusion, hey / Live in a one big eye / All we want is inclusion / Disability inclusion…hey / Live in one big eye.”
The video shows bright purple water filters and sanitizers. People are wearing masks and sanitizing their hands. A man joins him in the dance. He is wearing a reddish-brown jacket with a matching cap. People are still sitting outdoors while they are being shown how to wash hands and sand sanitize properly for safety reasons.
The song continues, “Disability inclusion, hey / Live in a one big eye / Disability inclusion, hey / All we want is inclusion / Disability inclusion, hey / Live in one big eye.” Another, person is now getting his nose-swab done for a COVID-19 test. Chiti continues singing about gender inclusion: “Have you thought about gender balance…yeah / Inclusion of persons with the disabilities / Think of caregivers / Consider personal assistants / What about women and girls? / Are they included? / Yeah…physical accessibilities / To all structures / Crucial concerning is needed. Oh yeah, yeah / Reasonable accommodations / Modified modalities. Information in accessible formats / Yeaahh.” Song continues in another language. People with disabilities are standing together and holding flyers that say, “We can do it.” Chiti continues to sing: “Disability, it’s not inability / Give us the opportunity because we can do it…yeah.” People are holding flyers of “Disability Inclusion.” Song continues: “Disability, it’s not inability / Give us the opportunity because we can do it…yeah” The same lines keep on repeating: “Disability, it’s not inability / Give us the opportunity because we can do it…yeah.” Many people are dressed in suits and ties. People continue to dance from their wheelchairs while Chiti continues to dance with another man around the swimming pool and with people. The music is fading slowly and the screen dissolves.
About this video Pil Pahit
Menanggapi diskriminasi di tempat kerja yang terus berlanjut, para penyandang disabilitas Indonesia mengadvokasi undang-undang yang akan memperbaiki kondisi pekerja. *Video termasuk deskripsi audio. *Baca bersama dengan mengklik tombol cc pada pemutar YouTube Anda.
Filmmaker: Kinanty Andini
Kinanty Andini is a freelance graphic design and digital artist. She is affiliated with the Indonesia Mental Health Association (IMHA), also known as the Association of Healthy Souls. Read more about Kinanty Andini
Transcript for Pil Pahit
Video dimulai dengan instrumental piano dan video pengendara sepeda, kendaraan, dan pejalan kaki yang bergerak di sebuah jalan di Jakarta, Indonesia. Gedung-gedung tinggi berada di latar belakang.
Fade ke timelapse kendaraan yang bergerak di jalan yang padat lalu lintas dan pepohonan di Jakarta. Gedung-gedung tinggi berada di latar belakang. Sulih suara seorang perempuan Indonesia dalam Bahasa Indonesia mengatakan, “Saya pernah bekerja di suatu perusahaan A di Jakarta. Pada tahun 2012 itu saya di PHK karena ketahuan sebagai penyandang disabilitas mental.”
Dipotong ke orang di balik sulih suara – Nurhayati Ratna Sari Dewi, seorang perempuan Indonesia yang mengenakan jilbab kuning. Dia adalah Ketua Ikatan Kesehatan Jiwa Indonesia (IMHA) atau biasa disebut Perkumpulan Jiwa Sehat Cabang Jakarta. Dewi duduk di luar dan berbicara kepada kamera: “Saya banyak bekerja selama 20 tahun di pekerjaan saya, tetapi waktu itu memang ada pengalaman pahit dimana saya ketahuan bahwa saya menderita Bipolar Disorder lalu saya di PHK.” Beberapa tanaman dan tangga eksterior berada di belakangnya.
Dipotong ke arah Dewi yang sedang bekerja dengan laptop di sebuah kantor. Dia mendongak untuk berbicara dengan seseorang di luar kamera. Sebuah meja panjang dengan barang-barang kantor berada di belakangnya.
Dipotong ke Dewi berbicara di luar, “Saya pada waktu awal kerja itu biasa biasa aja, sebenarnya saya mulai disabilitas mental sekitar 1997 ketika usia saya 18 tahun, setelah itu sih keadaan saya masih ringan jadi tidak perlu ke dokter setiap bulannya.”
Dipotong ke Dewi yang duduk di sebuah meja di luar. Dia mengenakan kacamata dan jilbab ungu. Dia berbicara dengan rekan kerjanya, yang mengenakan jilbab putih di sebelah kiri, dan orang lain yang berada di luar kamera.
Dipotong ke Dewi berbicara, “Saya ketika itu relapse lagi kan 2011 ketika saya mengalami baby blues postpartum. Nah, saya tuh tidak tahu juga bahwasanya penyakit ini nih harus berobat rutin ke dokter.”
Dipotong ke Dewi yang sedang melihat-lihat dokumen dengan seorang rekan kerja di kantor. Rekan kerjanya, yang duduk di sebelah kiri, memeriksa dokumen dengan pena. Sebuah laptop berada di depan Dewi. Dewi mengenakan jilbab krem, dan rekan kerjanya mengenakan jilbab putih. Rekan kerjanya yang lain, mengenakan hijab hitam, duduk di meja panjang di latar belakang. Sulih suara Dewi berlanjut, “Saya relapse lagi 2012. Tapi pada waktu 2011 tuh saya waktu relapse tidak bercerita bahwasanya saya ke psikiater.”
Cut to Dewi berbicara, “Nah, tahun 2012 nya itu pas saya ke psikiater dan diketahui oleh dokter kantor bahwa saya penderita bipolar, Akhirnya stigma berkembang.”
Dipotong ke Dewi berbicara melalui telepon seluler. Dia duduk di kursi biru-putih dan bersandar pada dinding putih.
Dipotong ke Dewi berbicara, “Yaa, saat itu saya ya menerima aja karena saat itu tuh memang stigma akan disabilitas mental atau mental illness kan memang.”
Dipotong ke gambar Dewi dan dua rekan kerjanya yang sedang mengerjakan laptop di sebuah kantor. Seorang perempuan duduk di sebelah kiri, Dewi di tengah, dan seorang laki-laki berkacamata di sebelah kanan. Sulih suara Dewi melanjutkan, “Negatif sekali gitu ya, kalau ketahuan di PHK seperti itu jadi ya sudahlah saya menelan pil pahit itu.”
Dipotong ke Dewi yang sedang melihat-lihat dokumen di kantor. Seorang pria berdiri di belakangnya. Sulih suara Dewi melanjutkan, “Pada saat yang sama, teman saya pun menderita penyakit gagal ginjal.”
Dipotong ke Dewi berbicara, “Dimana saya dan dia itu sama-sama chronic disease. Jadi penyakit yang lama gitu ya, tetapi saya dipecat dan dia enggak. nah, saya tuh merasa disitu kok enggak adil ya?”
Dipotong ke Dewi yang sedang mendengarkan dan mencatat di buku catatan saat seseorang di luar kamera berbicara kepadanya. Dewi duduk di luar bersama orang lain. Dia mengenakan jilbab hitam, kacamata hitam, dan masker wajah multi-warna.
Dipotong ke Dewi berbicara, “Kerugian bagi penyandang disabilitas mental pada saat itu ya kita tidak diberikan akomodasi yang layak misalnya sick leave gitu kan untuk kita beristirahat dan langsung men-judge gitu saja. Kerugiannya yaa stigma dan diskriminasi terhadap kita tuh aduh bener-bener ngga adil banget deh buat kita gitu loh.”
Dipotong ke Dewi dan dua rekan kerjanya yang sedang bekerja dengan laptop di sebuah kantor. Pria itu melepas earbud dan berbicara kepada Dewi dan rekan kerja lainnya. Sulih suara Dewi melanjutkan, “Kita tidak diberikan kesempatan untuk berkarya sehingga yaa itu merugikan kita.”
Dipotong ke Dewi berbicara, “Tapi kan sekarang sudah ada undang undang kan ya nomor 8 tahun 2016 dimana seorang disabilitas tidak boleh diberhentikan karena kedisabilitasan-nya.”
Dipotong ke papan informasi berwarna hijau dan ungu tentang Asosiasi Kesehatan Jiwa Indonesia dalam Bahasa Indonesia. Satu kruk lengan bawah berada di samping tanda informasi.
Dipotong ke Dewi yang berbicara, “Solusinya bagi kita, penyandang disabilitas mental itu kan sebenarnya membutuhkan akomodasi yang layak, penyesuaian-penyesuaian itu. Misalnya kita itu sebagai penyandang disabilitas mental tuh setiap bulannya harus ke psikiater, nah itu dari pihak perusahaan ataupun dari pihak pemerintah yang akan menurunkan PP (peraturan pemerintah) mengenai akomodasi yang layak.”
Dipotong ke gambar close-up tangan seorang perempuan Indonesia saat dia bekerja di laptop. Perempuan itu mengenakan jilbab putih, dan tanaman berada di latar belakang.
Dipotong ke Dewi yang berbicara, “Memperbolehkan kita untuk check-up ke dokter psikiater satu bulan sekali tanpa dihitung cuti. Terus kedua, apabila kita sakit diberikan waktu untuk beristirahat bukannya malah memecat kita.”
Dipotong ke seorang perempuan Indonesia yang mengenakan jilbab dan jas merah muda. Dia berjalan ke jendela, menarik napas dalam-dalam, dan tersenyum. Sebuah rak dengan tanaman berada di latar belakang. Sulih suara Dewi melanjutkan, “Ketiga, diberikan ruang tenang bagi kita apabila kita sudah burn out ataupun pengen istirahat sejenak.”
Dipotong dengan Dewi yang berbicara, “Keempat juga diberikan waktu fleksibel untuk kerja, terkadang kan kita agak susah tidur atau gimana, atau kita diperbolehkan datang telat atau bisa juga dikerjakan dari rumah. kan sekarang kan yang penting kan intinya pekerjaan kita tuh selesai.”
Fade ke dua pekerja kantor yang sedang melihat-lihat dokumen keuangan dengan pena. Di depan mereka, sebuah laptop dan komputer berada di atas meja. Suara seorang perempuan Indonesia dalam Bahasa Indonesia mengatakan, “Saya bekerja di sebuah hotel di bandung sebagai staf akuntansi.” Instrumental piano dari awal video bertransisi ke instrumental piano lainnya.
Dipotong ke orang di balik sulih suara – Lily Puspitasari, seorang perempuan muda Indonesia dengan rambut hitam panjang. Dia mengenakan kacamata hitam, duduk di sebuah ruangan, dan berbicara ke kamera: “Rekan kerja saya tidak membedakan sih, kan belum ketahuan penyakitnya saya itu. Pas itu sih melampirkan surat keterangan dokter pskiater, mangkannya jadi ketahuan.”
Dipotong ke gambar close-up orang Indonesia yang sedang membuka surat di meja kerja. Sebuah laptop, pena, dan buku catatan ada di atas meja.
Dipotong ke Pupsitasari berbicara, “Insiatif sendiri gara-gara saya bolos 2 hari.”
Dipotong ke gambar jarak dekat Puspitasari berbicara, “Yah, sama sekali responnya beda banget sama yang saya harapkan supaya perusahaan maklum atas kenapa saya bolos 2 hari.”
Dipotong ke Puspitasari melangkah melewati pintu cokelat.
Dipotong ke Puspitasari berbicara, “Pada saat itu saya tidak mendapatkan surat peringatan 1, surat peringatan 2, tetapi langsung saya diberhentikan pada esok harinya setelah saya melampirkan surat keterangan dari psikiatri itu.”
Dipotong ke Puspitasari yang duduk di luar dan membolak-balik majalah. Suaranya berlanjut, “Seharusnya menurut saya, harusnya diberi kesempatan untuk menjelaskan mengapa saya melampirkan surat sehat keterangan dari psikiatri itu.”
Dipotong ke Puspitasari yang sedang berbicara.
Dipotong ke seorang perempuan Indonesia yang tampak kesal. Dia mengerutkan kening, dan tangannya berada di pelipisnya. Rambut hitam perempuan itu dengan gaya rambut yang ditarik ke belakang. Dia duduk di meja kerja, dan di sebelah kanannya, sebuah kotak kardus kecil berisi binder dan barang-barang kantor lainnya. Seorang rekan kerja menghampirinya dan menepuk pundaknya untuk menghiburnya.
Cut to Puspitasari berbicara, “Jangan langsung tiba-tiba diberhentikkan. Seharusnya pemerintah juga memberikan akomodasi yang layak supaya saya bisa merasa ada kesempatan kedua untuk bekerja, misalnya ada ruang tenang kalau misalnya tiba-tiba lagi stress, lagi merasa produktivitasnya rendah ada ruang tenang.”
Dipotong ke tanaman, meja, dan dua kursi di balkon gedung pencakar langit. Gedung-gedung pencakar langit lainnya berada di latar belakang.
Cut to Puspitasari berbicara, “Pekerjaan juga bisa dilakukan di rumah.”
Cut to close-up shot tangan orang Indonesia yang sedang mengerjakan laptop di meja kerja. Tumpukan buku ada di atas meja. Voiceover Puspitasari melanjutkan, “Obat obatan psikiatri itu kan kadang kadang bikin susah bangun pagi.”
Cut to Puspitasari mengambil minuman di samping kompor dapur dan meneguknya. Konter-konter dapur penuh dengan bahan masakan dan alat-alat memasak. Suaranya berlanjut, “Jadi lebih baik misalnya biasanya kerjanya jam 8 pulang jam 5, digeser jadi perginya jam 10, pulangnya jam 7 malam ngga papa menurut saya.”
Dipotong ke seorang wanita muda Indonesia yang mengenakan jilbab berwarna krem. Dia sedang bekerja di depan komputer di sebuah kantor bersama dua rekan kerjanya. Semua pekerja mengenakan kemeja biru.
Cut to Puspitasari berbicara, “Harusnya masyarakat juga memperlakukannya jangan beda-beda gitu kan sebagai sesama manusia pasti banyak kekurangannya, jadi lebih baik sih jangan dibedakan karena itu akan membuat orang yang disabilitas mental itu jadinya jadi down.”
Fade ke teks hitam dengan garis tepi kuning pada layar hitam yang bertuliskan, “Copyright – @2022 IMHA. Semua hak dilindungi undang-undang.”
Fade ke teks hitam dengan garis tepi kuning pada layar hitam yang bertuliskan, “Dibuat dengan dukungan dari Proyek Keadilan Disabilitas dan Dana Hak Disabilitas.” Logo Proyek Keadilan Disabilitas adalah huruf “D” besar berwarna kuning dengan tombol putar hitam di tengahnya untuk menandakan video bercerita, dan teks putih bertuliskan “Proyek Keadilan Disabilitas” di kiri bawah. Logo Disability Rights Fund – kotak putih dengan teks hitam bertuliskan, “Disability Rights Fund” – berada di kanan bawah layar.
About this video ‘Tidak Perlu Ditakuti’
Desa Jongaya adalah salah satu pemukiman kusta terakhir yang tersisa di Indonesia. *Baca bersama dengan mengklik tombol cc pada pemutar YouTube Anda.
Filmmaker: Dija
Dija is chairperson of the Association of Indonesian Women with Disabilities (HWDI)’s branch in Simbang in the Indonesian province of South Sulawesi. Read more about Dija
Transcript for ‘Tidak Perlu Ditakuti’
Video dimulai dengan mobil dan sepeda motor yang melaju di jalan yang sibuk di depan gerbang masuk Desa Jongaya di Sulawesi Selatan, Indonesia. Sebuah spanduk besar dalam Bahasa Indonesia, menampilkan dua pria Indonesia, bergantung di gapura merah-putih di atas gerbang masuk Desa Jongaya, dan seorang pengendara sepeda motor memasuki desa itu. Kendaraan membunyikan klakson, dan musik piano lembut diputar di latar belakang sepanjang video.
Muncul teks hitam pada layar kuning bertuliskan, “Desa Jongaya adalah salah satu dari sedikit pemukiman kusta yang masih ada di Indonesia saat ini.” Suara kendaraan memudar.
Muncul teks hitam pada layar kuning bertuliskan, “Di masa lalu, penderita kusta dikarantina secara paksa, tetapi sekarang tidak ada lagi yang dipaksa untuk tinggal di Jongaya.”
Muncul teks hitam pada layar kuning yang sama bertuliskan, “Banyak yang memutuskan untuk pindah ke sini setelah mengalami diskriminasi di masyarakat mereka sendiri.”
Muncul Rahimi Daeng Rani, seorang pria Indonesia yang pernah mengalami kusta. Rani mengenakan topi sholat merah-putih, duduk di sebuah ruangan dan berbicara ke kamera dalam Bahasa Indonesia: ” Jadi orang tua tinggal di bangsal dulu, sewaktu ada bangsal di rumah sakit Jongaya..”
Muncul gambar bergerak ke arah enam pria Indonesia yang duduk di luar sebuah bangunan dengan grafiti di bagian luarnya. Seorang gadis Indonesia berjalan ke arah para pria tersebut. Suara Rahimi melanjutkan, ” Umur SD, ada belang-belang warna putih dipaha dan dilengan.” Orang-orang berbicara tidak terlihat kamera.
Muncul Rahimi yang berbicara di dalam ruangan, ” Disitu orang tua saya berkata, “kamu berobat karena kamu ada belang-belang warna putih”. Nah, dari situ, SD saya langsung dibawa ke puskesmas sama orang tua.” Orang-orang berbicara dan tertawa tidak terlihat di kamera.
Muncul seekor kucing oranye yang duduk di gang sempit di antara rumah-rumah dengan atap logam bergelombang berkarat. Kucing itu mengangkat kaki kanan dan menggaruk diri sendiri.
Muncul Rahimi berbicara, ” Saya masuk di sini, di Jongaya itu saya senang karena semua orang bagus, ramah-ramah, kita sama-sama orang yang disabilitas”
Muncul seorang perempuan Indonesia, mengenakan jilbab hijau, berjalan menyusuri gang yang dipenuhi gantungan jemuran cucian. Terdengar suara anak-anak berbicara, dan seorang anak Indonesia, di jendela sebuah rumah di sebelah kiri, melambaikan tangan kepada wanita itu. Suara Rani berlanjut, ” Tidak ada yang campuri.”
Muncul Rahimi berbicara, ” Tapi kalau kita keluar di jalan, banyak orang, mobil-mobil [angkutan umum] tidak mau ambil kita orang-orang yang disabilitas yang kelihatan disabilitasnya.” Orang-orang berbicara tidak terlihat di kamera.
Muncul tangkapan layar multi-warna dari sebuah artikel berita Indonesia dengan judul dalam teks hitam mengatakan, “Stigma dan Diskriminasi Masih Menjadi Tantangan bagi Eliminasi Kusta di Indonesia,” dalam Bahasa Indonesia. Bimo Aria Fundrika menulis artikel berita untuk “Suara.com,” yang diterbitkan pada 3 Februari 2022.
Muncul Rahimi berbicara, ” kan kalau seperti saya tidak kelihatan disabilitasnya, yang lain tidak diambil.” Orang-orang berbicara tidak terlihat di kamera.
Muncul gambar miring tiang telepon banyak kabel dari rumah-rumah di dekatnya. Sebuah rumah dengan dinding bata ada di sebelah kiri, dan seorang anak berbicara tidak terlihat di kamera.
Muncul Rahimi berbicara, ” Kalau saya lebih suka di sini karena orang dari luar saja sudah berani masuk di sini.”
Muncul seorang pengendara motor di sebuah gang. Sebuah sepeda motor yang diparkir bersandar pada atap seng berkarat di sebelah kanan, dan sebuah rumah berdinding bata di sebelah kiri. Seseorang berbicara tidak terlihat di kamera.
Muncul Rahimi berbicara, ” Tidak sama seperti dulu, orang-orang yang di luar itu tidak mau masuk di sini karena dulu di sini orang-orangnya terlalu didiskriminasi..”
Muncul gapura merah-putih dengan spanduk besar dalam Bahasa Indonesia, menampilkan dua pria Indonesia, tergantung di atas pintu gerbang Desa Jongaya.
Muncul Rahimi berbicara, ” Kalau Jongaya kita sebut itu ada sejarahnya juga, makanya yang di gerbang di luar itu semua masyarakat di sini melarang untuk dibongkar karena ada tulisan tahun Jongaya ada.” Orang-orang berbicara dan tertawa tidak terlihat di kamera.
Muncul anak-anak Indonesia yang bermain di luar rumah dua lantai dengan atap seng berkarat yang menghadap ke kali kecil yang memantulkan rumah tersebut. Seorang wanita Indonesia dengan rambut hitam sebahu mengawasi anak-anak.
Muncul Al Qadri, seorang pria Indonesia dan aktivis kusta yang pernah mengalami kusta. Dia berambut hitam pendek dan berkacamata, duduk di sofa abu-abu di sebuah ruangan dan berbicara ke kamera dalam Bahasa Indonesia dengan gerakan tangan, ” Saya berada di kompleks kusta ini karena adanya stigma dan diskriminasi terhadap orang yang mengalami kusta itu sekitar 20 tahun yang lalu. Itu betul betul. Stigma itu masih sangat kental, sangat kuat. Sehingga kalau ada orang, keluarga yang kena kusta itu, rata rata orang membuang keluarganya. ”
Muncul gambar close-up batu yang tergantung dari tali yang diikatkan ke kabel telepon pada hari yang cerah di luar.
Muncul Qadri berbicara di dalam ruangan dengan gerakan tangan, ” Bikinkan rumah rumah atau dia dipisahkan dari keluarganya. Olehnya itu, saya berinisiatif untuk meninggalkan keluarga karena pemahaman masyarakat bahwa kusta itu adalah aib. Jadi kalau ada keluarga yang kena kusta, maka yang perempuan tidak ada yang mau lamar, dengan laki laki tidak ada yang mau terima lamarannya. Itu yang membuat saya sehingga berada di kompleks ini, saya tinggalkan keluarga.”
Muncul gambar kamera bergerak pada apartemen satu kamar berlantai semen dengan barang-barang rumah tangga dan perabotan. Seorang gadis Indonesia dengan rambut hitam pendek duduk di tempat tidur kecil di sudut kiri.
Muncul Qadri berbicara, “Setelah saya putuskan untuk meninggalkan keluarga, saya memang mencari perkampungan yang cocok buat saya.”
Muncul gambar gerakan lambat seorang pria Indonesia yang berjalan menyusuri gang dengan sinar matahari yang terang mengaburkan wajahnya. Sebuah jemuran ada di sebelah kanan, seprai putih menutupi sepeda motor yang diparkir di sebelah kiri, dan kendaraan yang diparkir di sebelah kiri.
Munucl Qadri berbicara dengan gerakan tangan, ” Saya mendatangi beberapa perkampungan saya dari Lerang, Kabupaten Bone. Saya pergi ke tempat tempat di Kodya Pare-Pare dan terus beberapa perkampungan lainnya. Di tempat tempat tersebut tidak ada pekerjaan. Saya tidak merasa cocok karena disana hanya bertani dan batu merah.”
Muncul seorang pria Indonesia, mengenakan topi baseball cokelat, mengendarai sepeda motor yang menempel pada gerobak makanan. Sebuah kali kecil dan rumah-rumah dengan atap logam bergelombang berkarat berada di latar belakang. Suara Qadri melanjutkan, ” Sedangkan tangan seperti saya, kalau bekerja bekerja untuk batu merah, buat batu merah itu bisa tambah rusak.
Muncul Qadri yang berbicara dengan gerakan tangan, ” Nah akhirnya saya berada di Jongaya ini, saya mendapatkan pekerjaan sebagai tukang parkir. Di situ membuat saya tertarik sehingga saya apa lagi Namanya, mau berdomisili disini di Jongaya.”
Muncul kendaraan dan pengendara sepeda motor yang melintas di jembatan rendah di atas kali penuh sampah. Sebuah truk pick-up dan minivan yang diparkir saling berhadapan di jalan. Seorang wanita Indonesia mengenakan jilbab biru berjalan di tepi kali.
Muncul Qadri yang berbicara dengan gerakan tangan, ” Kalau dulu saat awal awal saya di sini, khususnya yang memang kelihatan butuh butuh fokus dan itu itu cukup banyak, yah ada sekitar 500an orang yang mengalami kusta dan mengalami kerusakan organ atau disabilitas seperti saya juga cukup banyak waktu itu.”
Muncul gambar pemakaman dengan batu nisan dari semen. Beberapa sepeda motor yang diparkir di dekat pemakaman, dikelilingi oleh pepohonan. Suara Qadri berkata, ” Tapi seiring dengan waktu, yang sudah tua meninggal, yang ada disabilitas juga sudah meninggal.”
Muncul gambar close-up, gambar miring dari tulisan pada dua nisan abu-abu yang masing-masing bertuliskan, “CANHOWAY RABU-22-11-2000,” dan “JAP YON LIEN 27-10-72″. Suara Qadri melanjutkan, ” Sehingga sekarang ini kalau kita melihat itu, presentase yang mengalami kerusakan organ atau disabilitas itu sudah sangat kecil.”
Muncul Qadri yang berbicara dengan gerakan tangan, ” Kalau saya tidak salah, hanya sekitar 200 yang mengalami kerusakan organ seperti saya. Tapi orang yang pernah mengalami kusta masih sangat banyak ada sekitar 450 orang. Tapi kalau dibandingkan dengan warga di sini, itu sangat kecil warga disini sudah ada sekitar 1300 lebih jiwa.”
Muncul dengan gerobak makanan berwarna biru dan kuning berjalan jalan kotor dan seorang pria Indonesia dengan rambut hitam pendek berjalan di belakang gerobak makanan tersebut. Sepeda motor yang diparkir berada di latar depan kiri, dan tanaman rumah tergeletak di jalan tanah di latar belakang. Seorang pengendara sepeda motor yang membawa penumpang bergerak di sudut jalan di latar depan, dan bel berbunyi tidak terlihat kamera. Qadri melanjutkan, ” Informasi belum sampai ke masyarakat secara benar tentang penyakit ini. Sehingga, masih banyak orang yang mengalami kusta itu cenderung menyembunyikan diri..”
Muncul Qadri berbicara dengan gerakan tangan, “Dan ketika dia mengalami kusta, menyembunyikan diri, dia tidak berobat, maka dia sangat berpeluang untuk menularkan ke orang lain.”
Muncul seorang wanita Indonesia dan seorang anak yang duduk di sebuah gang di samping sebuah rumah. Di atas mereka dan di depan mereka ada dua jemuran yang penuh. Dua anak Indonesia berjalan ke arah dua orang yang sedang duduk.
Muncul Qadri berbicara dengan gerakan tangan, ” Orang awam itu kan mereka mengidentik kusta seperti ini dia bilang itu kusta adalah jari jari yang keriting, jari jari yang puntung, tubuh yang penuh luka, kaki yang penuh luka, muka yang kayak monster dan sebagainya dan sebagainya.”
Muncul gambar bergerak di atas sebuah kali yang dibatasi oleh rumah-rumah kecil dengan atap logam bergelombang berkarat. Suara Qadri melanjutkan, ” Itu sebenarnya salah paham.
Karena penyakit kusta itu penyakit yang sangat simpel. ”
Muncul Qadri yang berbicara dengan gerakan tangan, “Penyakit yang menular, memang menular. Tapi penyakit yang paling sulit untuk menular. ”
Muncul foto close-up bekas luka kusta di bahu kanan seseorang.
Muncul to Qadri berbicara dengan gerakan tangan, “Kusta ini hanya baru berawal dari bercak-bercak di kulit disertai kurang rasanya, hanya berawal dari situ. Tapi karena bercak di tubuh itu yang tidak disertai gatal dan sebagainya, sehingga orang lalu bercak itu diabaikan dan tidak dihiraukan. Sehingga kuman yang ada di balik bercak itu, itu yang menggerogoti saraf saraf yang ada.”
Muncul gambar miring dari sepeda berkarat yang ada di atas rumah kecil dengan atap logam bergelombang berkarat. Sebuah tiang telepon dengan banyak kabel dari rumah-rumah di dekatnya memotong atap rumah kecil itu. Batu bata merah, dua kursi plastik putih, dan barang-barang lainnya mengelilingi rumah di luar.
Muncul Qadri yang berbicara dengan gerakan tangan, “Saya di sini berhadapan dengan semua yang ada di sini. Itu andaikata kuman saya masih aktif, tentu semuanya tertular oleh teman saya. Semuanya tertular oleh teman saya. ya di sini, berhadapan langsung dengan semua orang di sini. Jika bakteri saya masih aktif, pasti mereka akan menginfeksi teman-teman saya.”
Muncul gambar bergerak dari jendela sebuah ruangan kecil dengan tiga tempat tidur kayu. Beberapa pakaian tergeletak di atas setiap tempat tidur. Suara Qadri melanjutkan, ” Berapa orang dalam ruangan tertular? Akan tetapi, siapa yang bisa menjadi sakit? Itu yang sangat kecil.
Pertama tama bahwa memang harus diekspos lebih besar bagaimana supaya masyarakat betul betul bisa memahami penyakit ini. Itu yang pertama.”
Muncul Qadri yang berbicara dengan gerakan tangan.
Muncul pengendara sepeda motor dan seorang penumpang wanita Indonesia, mengenakan jilbab biru, memasuki Desa Jongaya. Pengendara sepeda motor kedua dengan penumpang dan bagasi berisi kendi air memasuki desa. Suara Quadri berlanjut, ” Mencapai bahwa apa lagi namanya itu.”
Muncul Qadri yang berbicara dengan gerakan tangan, ” untuk mengurangi masalah penyakit ini, itu yang paling utama. Terus, melibatkan mereka orang yang pernah mengalami kusta. kalau dia tidak mau melibatkan diri, maka kita harus memaksa untuk terlibat sebagai testimoni untuk menyadarkan masyarakat bahwa penyakit ini tidak perlu ditakuti, bahwa betul betul bisa disembuhkan. ”
Perlahan muncul teks hitam dengan garis tepi kuning pada layar hitam yang bertuliskan, “Hak Cipta – @2022 HWDI. Semua hak cipta dilindungi undang-undang.”
Perlahan muncul teks hitam dengan garis tepi kuning pada layar hitam yang bertuliskan, “Dibuat dengan dukungan dari Proyek Keadilan Disabilitas dan Dana Hak Disabilitas.” Logo Proyek Keadilan Disabilitas adalah huruf “D” besar berwarna kuning dengan tombol putar hitam di tengahnya untuk menandakan video bercerita, dan teks putih bertuliskan “Proyek Keadilan Disabilitas” di kiri bawah. Logo Disability Rights Fund – kotak putih dengan teks hitam bertuliskan, “Disability Rights Fund” – berada di kanan bawah layar.