Left In the dark?:
For Uganda's Deaf-blind, Inclusion is Neither Felt Nor Heard
Written by: Barbra Leni | Filmed by Richard Mugambe
Tuesday, September 23, 2025
Patricia Namukose’s world begins and ends with her mother’s presence. Without Harriet Nagayi by her side, she cannot safely leave the house, communicate her needs, or complete the simplest of tasks.
At 27, Namukose has never experienced sight and sound in the way most people do. Born with deafblindness, her understanding of the world is built entirely through touch, through the pressure of hands on her skin, the weight of objects placed in her palms, and the routine gestures that have become a language between mother and daughter.
Namukose currently lives with her mother at Rock of Escape, a small Pentecostal church located in Wakimese, Kyengera, on the outskirts of Uganda’s capital Kampala.
They relocated there after being evicted from their rented home by a landlady who gave no clear reason for the eviction.
A church corner where Patricia Namukose and her mother Harriet Nagayi stays.
“I was given 10 days by my landlady to leave the house and when I failed to get one in that period, my household items were all thrown out of the house to rot in the rain. It is hard for me to just find a place knowing I have a child who is differently abled so I have to be selective,” says Naggayi.
The church has since offered temporary shelter and they are struggling to fit their belongings at the small corner that is usually reserved for priests during services.
When Namukose was a week old, doctors discovered cataracts clouding her eyes. A surgery was done on her left eye, but it did not fully restore her vision. At six weeks, her mother was told that she had a congenital heart disease called VSD murmur and rubella syndrome.
By the time she was three, she could no longer respond to sound, and communicating with her became increasingly difficult. At the age of seven, her mother enrolled her at the Uganda School for the Deaf, hoping she could learn and socialize to no avail.
Harriet Nagayi interacts with her daughter ahead of a conversation with Solutions Now Africa. Photo by Barbra Leni.
Since then, Nagayi, who is her daughter’s full-time caregiver, cannot work or leave her unattended for long periods. Their world is tightly bound to each other, with little outside support.
“The life that I have lived with my child has not been easy at all. I was denied by my family, even the very people I was born with pushed me away. Everyone that has a child with a disability needs support from their family, but mine has never been there for me,” Nagayi said.
The National Centre on Deafblindness describes the condition as one where an individual has combined hearing and vision loss, thus limiting access to both auditory and visual information. It affects communication, learning, access to information, and mobility.
Deafblindness can be congenital (present at birth) or acquired later in life. Congenital deafblindness often leads to severe delays in communication, mobility, and social interaction due to limited access to sensory input from the start.
Acquired deafblindness may result in the loss of independence and challenges in adapting to new ways of accessing information. Both forms significantly affect a person’s ability to connect with their surroundings without proper support.
Infections such as meningitis, birth complications, or untreated eye and ear infections could also result in one becoming deafblind. Regardless of cause, those affected face some of the greatest challenges in education, healthcare, and daily life.
The reality for people like Namukose is that they are often completely excluded from systems that are built to serve those considered “normal.”
Disability in Uganda is still largely misunderstood. While there have been significant efforts over the years such as the Persons with Disabilities Act of 2020, which aligns with the United Nations Convention on the Rights of Persons with Disabilities (CRPD) many of these frameworks do not account for the specific needs of people with multiple disabilities.
The country ratified the CRPD in 2008 and has since adopted a number of legal frameworks intended to protect and promote disability rights.
However, there remains a substantial gap between policy and practice especially for people with complex disabilities like deafblindness.
Despite being classified as a distinct disability under the CRPD, deafblind individuals often fall between the cracks.
According to the 2014 Uganda National Population and Housing Census, about 12.4% of the population lives with some form of disability. But that figure does not indicate how many live with both hearing and vision loss, because national surveys rarely capture this level of detail.
Across the country, there are no dedicated schools or centers for people living with dual sensory loss except for one Buckley High School in Iganga, which remains the only facility of its kind. Without access to specialized communication methods like tactile sign language or braille with auditory support, most deafblind individuals remain isolated, even when physically surrounded by others.
Jane Kantono, Principal Education Officer at the Ministry of Education and Sports (Special Needs and Inclusive Education Department) says, “majority of the schools designed for children with special needs, have no trained instructors for deafblind learners”.
Schools for the deaf usually rely on visual cues. Schools for the blind use verbal communication. Few spaces are equipped for those who cannot depend on either.
Disability inclusion, in practice, often focuses on what is most visible. Wheelchair ramps are easier to build than tactile communication strategies. Without formal tactile sign language, individuals who are completely deafblind have no access to information at all. As a result, they are entirely excluded from communication and daily interaction.
Patricia Namukose shares with her mother. Photo by Barbra Leni.
In Uganda, there are currently only two trained tactile communicators, which highlights a significant gap that urgently needs to be addressed.
Edward Otim, Regional Director for Sense International East Africa, a non-profit organization supporting children with deafblindness across the region says there is need for a concerted effort with all stakeholders to improve services for special interest groups.
“We worked hand in hand with the Ministry of Education and developed a two step inclusive education model for educating a child with deafblindness specifically. The model ensures that learning starts at home and together with the National Curriculum Development Centre (NCDC), a curriculum was developed that supports children with deafblindness. It was divided into two levels, the first one focusing on activities of daily living and the second focusing on pre-vocational skilling,” he says.
Namukose has the capacity to learn, to connect, and to engage with others if systems around her were designed to accommodate that. But the reality is that they are not. And so, she remains on the margins.
For individuals like her who cannot go to the market, attend school, or visit a hospital without her mother. There are no social services to offer temporary support, no trained specialists not only in their communities but even within public spaces who can offer support.
Healthcare is another barrier. Many hospitals are not accessible to people with visual or hearing impairments. Sign language interpreters are rare, and braille or tactile information is nonexistent.
For deafblind patients, communicating symptoms is nearly impossible unless they are accompanied by someone who understands their cues. Nagayi says that even when she takes Namukose to a health center, she often struggles to explain her daughter’s condition to the staff.
“I have to explain everything she’s feeling so that the doctors can help her since there is usually no one to help ease communication,” Nagayi says, adding that “It is very difficult because it feels like I have to get into her body to fully understand what she’s going through and for them to understand what the symptoms she is having.”
Social exclusion goes beyond access to services. It affects how individuals with disabilities are seen by their communities. Harriet recounts moments when neighbors have thrown irrelevant comments about Patricia or ignored her entirely.
Some believe she is incapable of understanding anything or working. Others assume she must have been cursed. These beliefs, rooted in ignorance, have kept Patricia and Harriet isolated.
Despite all this, Nagayi remains determined to give her daughter the best life she can manage. She tries to involve Patricia in household routines. She helps her walk around the house or even prepare food. But she knows it is not enough.
“She needs to learn. She needs to meet others. She needs to live beyond this house. During her adolescent stage, she would always get angry about every small thing and doctors told me it must be because she only spends time with me and she is tired of the same routines,” Nagayi says.
Efforts to address the challenges faced by the deafblind community in Uganda have begun to take shape, with organisations like Sense International playing a central role.
As a leading organisation focused on supporting people with deafblindness, Sense International works to improve access to education, healthcare, and inclusive communication methods.
“One of our biggest challenges is ensuring that deafblindness is recognised as a distinct disability category within national policy,” Otim says.
They advocate for the integration of tactile interpretation in schools, training for caregivers, and the strengthening of early childhood screening and intervention services. Despite these efforts, the organisation continues to face major obstacles, particularly limited funding and low public awareness.
“We’ve worked closely with government partners to push for inclusive policy reforms, but there’s still a long way to go in ensuring that people with deafblindness can live with dignity and full participation in society.” Otim adds.
Patricia Namukose interacts with a child at church. Photo by Barbra Leni.
Agenda 2030 and the Sustainable Development Goals emphasize the importance of leaving no one behind. However, in a society where inclusion is often discussed in broad terms, equal opportunities, access for all, leaving no one behind, Who exactly is included in that vision? And who is not?
People affected by deafblindness in Uganda are the most marginalized because they are not even included in the activities of the disability movement due to gaps in communication. Due to the invisibility of the disability, persons affected by deafblindness are at risk of exclusion.
According to the World Federation of the Deafblind, an estimated 0.2 to 2% of any population may be affected. In Uganda, this translates to thousands of individuals who fall into a grey area within the disability support system often invisible in policy, underrepresented in advocacy, and unsupported by infrastructure.
Most schools, health centers, and community programs are designed with single-disability accommodations in mind, ramps for wheelchair users, sign language interpreters for the deaf, braille materials for the blind. But for someone like Patricia, who requires a more specialized form of support such as tactile communication, the services are virtually non-existent.
The long-term consequences of this exclusion are severe. People with deafblindness who are not supported often live in poverty, suffer from mental health issues, and are at risk of abuse. Their families become isolated along with them.
Exact statistics on the number of deafblind individuals in Uganda are scarce. Most national data collection exercises, including censuses, do not separate by combined disabilities. However, disability rights organizations estimate that several thousand people across the country live with some form of dual sensory loss.
For families, especially mothers like Harriet, the burden is immense physically, emotionally, and financially.
Experts in inclusive education and disability rights point to several key interventions. First, the training of more interpreters and educators who can work with deafblind individuals using tactile sign language or object symbols.
“The tactile mode of communication is still lacking in the country. However, we worked with one doctor from Kyambogo University in 2021 to develop the first tactile signs in Uganda alongside one of our partners, the National Association for Persons with DeafBlindness in Uganda (NADBU) to train some of the parents in different districts. I still do acknowledge that we have not been able to get to the point we would have wanted. You’ll find that the mode of communication within these homes is completely generic. The parents and community members are struggling and end up using a language that favours them” Otim says.
The National Union of Disabled Persons of Uganda (NUDIPU), the umbrella body for organizations of persons with disabilities (OPDs), continues to advocate for inclusive policies.
“When disability is spoken about in Uganda, deafblindness is often left out not because it doesn’t exist, but because the system doesn’t know what to do with it,” says Esther Kyozira, Chief Executive Director National Union of Disabled Persons of Uganda(NUDIPU). “We need to start by recognizing it as a distinct disability category, with distinct needs” she adds.
Second, the inclusion of dual-sensory impairments in national data collection to better understand the population’s size and needs. Third, government funding for targeted programs that offer assistive technology such as vibrating alarm systems, braille-labeling kits, and mobile apps designed with haptic feedback.
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