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Rwanda’s Marburg Crisis
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Ensuring Equal Access to Life-Saving Information for Disabled Rwandans
October 23, 2024
As Rwanda confronts its first-ever Marburg virus outbreak, people with disabilities face heightened risks — not only from the virus but from the lack of accessible health information. In particular, Rwandans who are Deaf, DeafBlind, blind, or have psychosocial disabilities face significant obstacles in accessing essential information and healthcare.
Although the Rwandan government has reported no new infections in recent days, the Marburg virus — related to Ebola — remains highly contagious, spreading through direct contact with bodily fluids like blood and saliva or with contaminated surfaces. Clear communication is therefore critical to ensuring public safety. However, for Rwandans who are Deaf or DeafBlind, public announcements, radio broadcasts, and other audio-based communication channels, including many social media posts, are mostly inaccessible.
“Without proper accommodations, such as sign language interpreters, captions, Braille, or visual aids, the Deaf and DeafBlind community may miss crucial information about how to protect themselves, symptoms to watch for, or where to seek help in case of infection,” says Joseph Musabyimana, executive director of the Rwanda Organization of Persons with Deaf Blindness. “I really worry that many Rwandans who are Deaf and DeafBlind are not aware of the virus.”
Preventing the spread of the Marburg virus requires strict hygiene and safety measures, including maintaining social distance and avoiding contact with contaminated surfaces. Rwandans who are blind or have low vision often rely on touch for mobility and navigating their environment and could struggle with these recommended precautions. “To effectively protect blind individuals from the Marburg virus, it is crucial for Rwanda’s public health system to implement inclusive strategies for communication and healthcare services,” says Marceline Gato, who is blind. “Public health information must be provided in accessible formats, such as Braille, audio announcements on the streets, and text-to-speech tools, ensuring that blind individuals receive the same vital information as the rest of the population.”
An Inclusive, Mental Health-Centered Approach
Rose Umutesi, executive director of the National Organization of Users and Survivors of Psychiatry in Rwanda (NOUSPR), says the stress of a public health crisis can exacerbate mental health conditions, leading to increased anxiety, paranoia, or feelings of isolation. Fear of the virus, along with the possibility of quarantine or hospitalization, could be triggering for Rwandans with psychosocial disabilities. “So an inclusive, mental health-centered approach is mostly needed. Health communication must be delivered in a sensitive and accessible manner like door-to-door or community awareness to the village level to help individuals understand the situation without inducing panic or confusion,” she says. “Specialized mental health support should be integrated into the broader healthcare response, including access to crisis counseling, psychiatric care, and medications for those whose mental health conditions might worsen during the outbreak.”
Umutesi adds that healthcare providers and caregivers should be trained to recognize signs of mental health deterioration and how to provide appropriate interventions, such as calming techniques or clear explanations of outbreak procedures. Efforts should also be made to reduce stigma and discrimination during the outbreak, as persons with psychosocial disabilities may face additional social barriers when trying to access care.
Intersectional Concerns
Rwandan women often face discrimination based on gender, and for those with disabilities, this discrimination is compounded by both their disability and, in some cases, their socio-economic status. If Rwanda’s Marburg cases start to climb again, Rose Kanyamfura, legal representative of the Organization of Women with Disabilities for Health Promotion and Development in Rwanda (OWDHD), worries women with disabilities will be most significantly impacted. “Women with disabilities often encounter greater difficulties in accessing healthcare services, even in normal circumstances,” she says. “During a Marburg virus outbreak, when healthcare systems are overwhelmed, these barriers could intensify.”
In addition, women with disabilities may have reduced access to social safety nets or emergency relief programs, either due to discrimination or because these programs are not designed to meet their specific needs. This can make it more difficult for them to recover from the economic shock of an outbreak and can have long-term consequences for their financial stability.
“To protect the rights and well-being of women with disabilities during a Marburg virus outbreak, Rwanda’s public health measures must be inclusive and responsive to their specific needs. This includes ensuring that health communication is accessible in multiple formats, such as Braille, audio, and sign language so that women with disabilities receive life-saving information,” says Kanyamfura. “Additionally, economic relief programs must prioritize women with disabilities by providing financial assistance, food, and support tailored to their circumstances. Rwanda can help mitigate the impact of a Marburg outbreak on women with disabilities, ensuring they are not left behind in the response and recovery efforts.”
Deepening Economic Vulnerability
In Rwanda, any type of outbreak like Marburg could significantly affect the economic livelihoods of people, particularly those with disabilities. Rwandans with disabilities already face systemic barriers to employment, such as limited access to education, vocational training, and inclusive hiring practices. These challenges could intensify during an outbreak, leading to heightened financial insecurity. Employers may reduce their workforce or temporarily close businesses, and individuals with disabilities may be among the first to lose their jobs in such situations.
“If no measures are taken to stop the virus, it will likely deepen this economic vulnerability. Health-related expenses, such as medical bills [and] increased transportation costs for accessing healthcare … would further strain their limited resources,” says Beth Nasiforo Mukarwego, president of the National Union of Disability Organizations in Rwanda (NUDOR).
She adds that NUDOR, along with other partners, will continue advocacy efforts to ensure that people with disabilities are informed about the virus. “But, we wish the government would pass the information in all ways of communicating inclusively,” she says.
Francine Uwayisaba is a contributing writer with the Disability Justice Project and a field officer at Rwanda Union of Little People (RULP). At RULP, she is in charge of the organization’s communications. She writes grants, manages RULP’s social media, and composes articles and weekly updates for the website.
Editing and reporting assistance by Jody Santos
News From the Global Frontlines of Disability Justice
Rwanda’s Marburg Crisis
As Rwanda confronts its first-ever Marburg virus outbreak, people with disabilities face heightened risks — not only from the virus but also from the lack of accessible health information. “Without proper accommodations, such as sign language interpreters, captions, Braille, or visual aids, the Deaf and DeafBlind community may miss crucial information about how to protect themselves, symptoms to watch for, or where to seek help in case of infection,” says Joseph Musabyimana, executive director of the Rwanda Organization of Persons with Deaf Blindness.
Capturing Vision Through Sound and Touch
Last summer, the DJP trained Indigenous activists with disabilities from the Pacific on the iPhone camera to create a documentary series on disability and climate change. With VoiceOver, the iPhone provides image descriptions for blind and low-vision filmmakers and offers other accessible features. “If you think about it, it doesn’t make sense for a blind person to use a camera,” says DJP filmmaker Ari Hazelman. “The iPhone gives you more avenues to tell your story in a more profound way as a blind person.”
Work for All
The We Can Work program equips young Rwandans with disabilities to navigate barriers to employment through education, vocational training, and soft skills development. By fostering inclusive workplaces and advocating for policy changes, the program aims to reduce poverty and promote economic independence. Participants like Alliance Ukwishaka are optimistic that the program will enable them to achieve their dreams and showcase their potential. The initiative is part of a larger effort to support 30 million disabled youth across seven African countries.
Global Recognition
Faaolo Utumapu-Utailesolo’s film “Dramatic Waves of Change” has been named a finalist in the Focus on Ability International Short Film Festival. The film, completed during a Disability Justice Project workshop in Samoa, highlights the impact of climate change on people with disabilities in Kiribati. Utumapu-Utailesolo, who is blind, used an iPhone with accessibility features to create the film. “Do not leave people with disabilities behind when [you] plan, implement, and monitor programs regarding climate change and disaster,” she says. Her achievement is a testament to the power of inclusive filmmaking.
Advancing Democracy
Rwanda has made significant progress in making its elections more accessible, highlighted by the July 15 general elections where notable accommodations were provided. This was a major step forward in disabled Rwandans’ quest for equal rights and participation. “You cannot imagine how happy I am, for I have voted by myself and privately as others do accessibly,” says Jean Marie Vianney Mukeshimana, who used a Braille voting slate for the first time. “Voting is a deeply emotional and meaningful experience for a person with any disability in Rwanda, reflecting a blend of pride, empowerment, and hope.”
Barriers to the Ballot
Despite legislation like the Americans with Disabilities Act, barriers at the polls still hinder — and often prevent — people with disabilities from voting. New restrictive laws in some states, such as criminalizing assistance with voting, exacerbate these issues. Advocacy groups continue to fight for improved accessibility and increased voter turnout among disabled individuals, emphasizing the need for multiple voting options to accommodate diverse needs. ““Of course, we want to vote,” says Claire Stanley with the American Council of the Blind, “but if you can’t, you can’t.”