‘I don’t want him to die this way’: Uganda’s hidden children

Namazala, Jinja District, Uganda – The home of Joy Nangobi sits on the edge of Namazala village. Its front is open to the main road and thoroughfare that carries trucks loaded with sugar cane harvested from the fields surrounding it. Its back yard is small and fenced by the tall, dense cane. Two goats sit idle in the yard as three neighbourhood children play around them. Laundry hangs neatly drying over a wood stack beneath an overcast mid-morning sky.

From a small outside kitchen, Joy slowly tugs her 20-year-old daughter Katherine “Kat” Muwunguzi by the wrist across the hard clay, Kat’s knees grinding the sharp rocky earth to the storeroom she now sleeps in.

The walls are covered in a thin layer of red dust, the floor scattered with wood chips beneath a steel bed rusted and lacking a mattress. A filthy, tattered blanket is the only barrier between Kat’s lithe body, the cold night air and malaria.

Joy wrenches Kat up to the bed’s edge, her arms and head flailing. Kat’s legs are twisted unnaturally beneath her as she sits on its edge, her smile childlike as she puts her hand inside her mouth. She is instructed not to move and Joy leaves the room and shuts the door behind her, to resume cooking the midday meal.

Kat lives with an intellectual disability and what is assumed by her mother to be epilepsy.

Her intellectual disability has never formally been diagnosed, she can’t talk and is prone to acts of violence.

“When we went to a government facility [hospital], that was when they told us she has mental issues and to go away.” Joy’s despair is clear as she explains through an interpreter: “At one point when in the process of taking her to the hospital she would bite my husband seriously. At one point, he was even forced to throw her after a strong bite.”

The stigma of people with intellectual disabilities is fuelled by a cultural belief that they are ‘cursed’

Kat has a four-year-old son, Edwin, though she isn’t aware that she is the boy’s mother. When Kat began to show at seven months and she was confirmed to be carrying Edwin, their next-door neighbour disappeared. Joy and her husband Robert Balina, workers on the sugar cane plantations, suspect their next-door neighbour raped Kat in the sooty outdoor kitchen while they slept inside. He has never been charged.

This family dynamic means that Joy raises Edwin, but not as her own. She is determined to teach Edwin that Kat is his mother.

“We are trying our level best to try and create a relationship between the child and his mother, but she doesn’t have anything that she cares about given her mental situation.

“We always tell this child [Edwin] that no matter the condition of your mother, she is your mother. Every time we try to ask him, just to find out, if he remembers who his mother is, and if you ask him, he says – ‘the one who is mentally disturbed is my mother’.”

Kat is among an estimated one in four adults with a psychosocial or intellectual disability in Uganda to have been the victim of sexual assault. But rape is only one of a raft of human rights abuses this minority face due to their vulnerability.

The stigma of people with intellectual disabilities is fuelled by a cultural belief that they are “cursed”.

Restrictive practices such as restraint, tethering and forced seclusion are common. In Uganda, people living with psychosocial or intellectual disabilities are often considered a burden on society.

While NGOs and local experts in the field of intellectual disability cite a lack of education and awareness as being the major hurdles to overcoming the cultural taboo around such disabilities within communities, they also say the government has failed to prioritise funding.

But a small corner of society has taken up the challenge and is providing a sliver of hope to those like Joy and Kat.

‘They said he had malaria’

In early 2022, a trailblazing mother’s journey to have her son’s disability recognised led to a Ugandan High Court decision which found the Ugandan government guilty of human rights abuses towards people living with intellectual disability, particularly autism.

Nestled between the rolling hills and plots of farmland surrounding the small central city of Kamuli is the sprawling village of Nabwiguru. Perez Mwase sits in the doorway of a single-roomed, thatched hut, his long, bare legs splayed awkwardly on the packed red earth. Sheltering from the low morning sun, he holds his head in his hands and emits a constant low, guttural moan. The 19-year-old picks up a stick from the ground and puts it between his teeth, frantically strumming at it as though a folk musician’s jaw harp.

To some, his peculiar disposition may seem alarming but his mother, Lovinsa Namwebya, 54, is not concerned until he lashes out, hissing, in the direction of a chicken pecking for stray maize kernels. Amid the squawking and motherly admonishments, Perez flashes a cheeky crooked smile.

Lovinsa tried for years to have her son’s condition diagnosed, first at the local Kidera Health Centre where she was told he had malaria and was given tablets. This diagnosis was repeated at the larger Buyende district hospital, then again at Nalufenya hospital in the region’s largest city of Jinja.

“If I had known earlier, [the issue with Perez] I would have intervened and understood,” she says. “But for every hospital that I went to, the doctors failed to tell me anything and I was wondering whether the doctors were incompetent.”

At the age of four, Perez began “breaking pots at home” and “destroying neighbours’ property”. Unable to cope with his aggression and hyperactivity, his parents tied him to a tree, where he remained each day. He ate and toileted in the same place until late each evening when he would rejoin the family inside to sleep. When Perez was 12 years old, Lovinsa was introduced to a community outreach worker volunteering for the social justice organisation Centre for Human Rights and Development (CEHURD) through a family member who lived and worked in the capital, Kampala.

“I said I’ve tried the traditional healers; I’ve tried traditional medicine, but Perez hasn’t changed. So, he proposed that Embrace Kulture pick [up] the child and bring him for rehabilitation.”

A small, privately funded NGO based just outside Kampala in Entebbe, Embrace Kulture runs the Amaanyi Centre, a home and school for children with intellectual disabilities which prepares its students for life as adults. Stephan Kabenge, its manager of outreach and behaviour interventions, explains that the NGO also runs outreach operations throughout the country with an emphasis on “building the capacity of civil society organisations and other community members so they can be able to look after their [own] children with intellectual disabilities. So, they can be independent in life.”

Through the coordinated efforts of Embrace Kulture and CEHURD, Perez was observed for two days in 2016 by one of Uganda’s leading psychiatrists, Catherine Abbo – one of only 53 psychiatrists in a country of more than 45 million people – and was officially diagnosed with autism spectrum disorder in severe form.

Lovinsa, Kabenge and Abbo agreed that Perez should move to the Amaanyi centre. Financial constraints hampered this move for four years. Then in 2020, when he was 16, Perez left Nabwiguru to live 170km (106 miles) away from his home.

In November 2017, during the years between Perez’s diagnosis and his move to Amaanyi, the family mounted a legal challenge against the Ugandan government and the local Buyende government over their failure of the country’s national hospitals and Buyende’s regional health services to provide early detection and rehabilitation services at the primary healthcare level for a person living with autism.

‘I want him to be included in society’

As the shadows of the trees stretch across the beans drying in Lovinsa’s front yard, she explains why she put herself and the family through the rigours of a legal process that laboured on for nearly five years.

“The reason why I went to court is I wanted support for Perez. I wanted him and other children to be included in this society, and also to make sure that his wellbeing is improved.

“I am doing it for Perez, but also for other children with disabilities because they both [all] are going through the same situation with no support from institutions and the government.”

In a landmark decision in March 2022, the court ruled in favour of Perez on all counts. The court found that the government’s failure amounted to a violation of his human rights; his right to health, equality and freedom from discrimination – and his right to human dignity provided for under the 1995 Constitution of the Republic of Uganda.

The question remains – what to do with Perez now he is home permanently? Tying him to the tree again is not an option

In the dry, warm morning air not far from her home, Lovinsa leads Stephan Kabenge from Embrace Kulture on a walk to inspect land that the NGO has leased for her to use for planting vegetables. Perez runs ahead freely, loping barefoot across the narrow track into the dense greenery, the bush punctuated with prized coffee and cocoa plants, his interest elsewhere, uninhibited, skyward. Eyeing Perez’s lack of direction, Lovinsa steers him back on course with a stern yelp.

The track opens onto the main road of Nabwiguru, which passes through the village’s main trading centre and past its school. The pupils on their morning break swarm like ducklings to look at Perez while shopkeepers stare as he hitches his beltless, ill-fitting three-quarter-length jeans.

A belt could be used as a weapon and may be dangerous, Kabenge explains. Perez is clearly uncomfortable with the attention, his cheerful high-pitched “Eh-yaah!” turns to deep-throated growls as he tucks the crook of his elbow behind his head and cowers into his mother’s bosom.

It takes an hour to reach the small, 20-square-metre plot by foot. The land is fertile, and the pair agree that Lovinsa should begin planting. The plot could provide the family with a steady source of income and food, but the question remains – what to do with Perez now he is home permanently? Tying him to the tree again is not an option.

Perez has moved back home after two years at the Amaanyi Centre, where he learned basic skills like dressing, toileting and feeding himself with cutlery. Lovinsa was also supported by Embrace Kulture during this time to learn about autism and how to manage her son’s behaviours. Yet Lovinsa and Perez are one of a select few who have benefitted from this support.

‘If God doesn’t intervene, he will die this way’

While the result of Lovinsa’s legal case was a monumental step forward for the rights of Ugandans living with intellectual disability, it is still unclear what, if any, support other families could receive – families such as the Otolais.

About 200km (120 miles) northeast of Perez’s home, dissected by the shallow marshland of Lake Kyoga, where the landscape transforms from damp lush jungle to barren, rocky plains is the main commercial city of Soroti (population 60,900). Five kilometres northwest of the city, the deeply rutted road leading to the village of Ochomai is flanked by maize fields reddened by dust. Here, eucalyptus trees shade the local taxi drivers as they wash their motorbikes – colloquially known as “boda-bodas” – bare-chested in the baking sun.

A farming area, its residents till fields of sorghum and maize, sesame and peanuts. Moses Otalai is such a farmer. A father of four, his second son, Sam, is 20. The family compound comprises three huts, one for Moses and his wife, one for Sam’s brothers and a third which Sam shares with stores of firewood and sacks of grain.

Because of Sam’s intellectual disability, Moses has formed a friendly relationship with community outreach worker Pastor Fred Alimet. The pastor spends his time outside sermons identifying cases of intellectual disability in the regions surrounding Soroti and referring them to organisations such as Embrace Kulture. He is visiting Sam today.

After courteous greetings and small talk, Moses beckons the Pastor towards his son’s hut and warns him to be careful as Sam is unpredictable. Sam’s bed is a large nylon bag, usually reserved for the delivery of sand and soil, atop a tattered piece of foam. A shredded mosquito net hangs limply, useless, from the ceiling.

Sam’s ankles are bound with a coarse rope and tied to a heavy log and he does not move, his once white shirt now beige with filth. His face is blank, his cheeks and forehead disfigured by lumpy protrusions he has had since birth. He has a wispy, unformed moustache – a sign of his youth. Fred offers a bottle of soda and Sam sits up to guzzle the fizzy drink in one long ongoing gulp. He belches and smiles.

Moses says he ties up his son to protect the rest of the family and the community. Upon hearing his father’s words, Sam’s wide grin becomes an unsettling glare. In the past that glare has manifested into violence, first against himself and then towards others. Moses explains despondently: “He begins to get a stick and when he gets a stick, sometimes he can beat himself. And then we realise, now when he gets to beat himself that he wants to beat other people also. So, we see his actions and then we tie him.”

Unlike Perez, Sam has not been diagnosed. When Sam was a boy, Moses took him to the hospital in Soroti numerous times but the facial disfiguring was dismissed as “a rash”, his intellectual condition, “a sickness”.

Moses is desperate for a solution, he says, particularly as the family has been all but ostracised by the local community ever since Sam lashed out at some villagers who then beat him. So far, this has not affected Moses’s ability to sell produce in the village, thankfully.

He doesn’t know what to do, he says, and feels that “there are no people who help or have ideas on how to take care of Sam”.

His face wears the look of a man who has given up hope – any fight long since faded. “If God doesn’t intervene and make him fine, then the last thing is for him to die in that way [tied up], and I don’t feel fine about it,” he says.

In Uganda, the lines between abuse and care are blurred when it comes to intellectual disabilities. The use of restraint and seclusion is defined as a human rights abuse under Article 5 of the Universal Declaration of Human Rights but they are widely accepted as ways of managing people with neurological issues. The Mental Health Act 2019 of Uganda still allows for the use of ECT (electroconvulsive therapy), seclusion and restraint.

Derrick Kizza, executive director of Mental Health Uganda, a community-based non-profit organisation that offers local mental health support, says the process of restraining and hiding away disabled people is driven by “desperation” and a lack of facilities. However, he adds that the government needs to look at changing policy from one of institutional care to community health service models.

“Policy must come to embrace community mental healthcare – for the government to know that they’re going to spend less when they invest in prevention and promotion, rather than running a curative kind of system.”

Poisoned – but diagnosed with malaria

The lush property adjacent to Lovinsa and Perez’s home is a banana plantation. The plants are thick with unripened fruit but surrounded by weeds and scrub – ideal ground for dangerous local snakes.

On a wet day in May this year, those weeds were being treated with herbicide by local contractors, who were carrying the poisonous liquid in old soda bottles. Perez, alone and unrestrained while his mother was out in the fields working, saw the bottles tantalisingly close by. Noting the workers slurping down mangoes on their break, he took the bottles from their wheelbarrow and downed the contents. Lovinsa later found Perez unresponsive, two empty bottles beside him.

After unsuccessfully trying to rid his body of the poison by making him vomit and sensing the urgency of his deteriorating condition, Lovinsa got him on a boda-boda to the regional hospital in the nearby town of Kamuli. He was put on an IV drip but his vital signs worsened. In her panic, she rang Kabenge to inform him that Perez had died.

Her boy was supposed to be treated for poisoning, but the diagnosis notes read: ’16-year-old male mentally retarded child being managed for fever, malaria’

Suspecting Lovinsa’s grief and shock may be clouding her judgement, he organised an ambulance to take Perez from Kamuli to the bigger hospital in Jinja, an hour away. There, he was put on life support and at 1am the doctor asked her to hold Perez’s hand and pray.

His body began to show signs of fight the next day. As he regained consciousness, Perez struggled against the tubes inhibiting his arms and face, an annoyance for a boy for whom basic clothing is aggravating. His body finally purged of the poison, he was discharged from the emergency room but was admitted to the mental health department where doctors put him on sedative medication.

Lovinsa was baffled by this course of action, as her boy was supposed to be treated for poisoning, so she looked at Perez’s file. Remarkably, a photograph of the diagnosis notes shows them to read: “16-year-old male mentally retarded child w/cerebral palsy being managed for fever, malaria.”

This widespread lack of education around intellectual disability and mental health is not just common among the general population and the wider health system but also within the corridors of Uganda’s policymakers. Uganda’s 2022-23 health budget apportions only 1.74 percent to non-communicable diseases (which encompass intellectual disability and mental health).

Abbo, the psychiatrist, says: “I think there are a number of factors [regarding lack of funding] but the one that comes to mind – just lack of priority. Intellectual disability and mental health have been seen as something that should not be taken care of within the healthcare system, because of the cultural beliefs. These beliefs shape mental health which in turn impacts on how individuals and communities cope, seek help and understand mental illness, including policymakers.

“So, you find that even the people who make decisions also believe that the issues should be handled either by traditional healers or by the judicial system. When it comes to apportioning healthcare services, intellectual disability and mental health will be given very low priority.”

The financial burden for providing such care invariably falls to NGOs like Embrace Kulture. It receives no government support and relies on international donor funding, mostly from the United States. The Amaanyi Centre housed more than 20 students at its peak but, due to pandemic-related increases in expenditure, was forced to downsize. Sadly, its last remaining students will be sent home at the end of this year because funding has dried up.

Stephan Kabenge’s disappointment in the current system is clear. “The times we approached the government for funding, the government has instead asked us to fund them to do what we are doing,” he said. “There is a systemic issue and also the policy is not being implemented. When you look at our Constitution, it’s [the] role of the government to ensure that there is easy access to health services for all people, regardless of the agenda, sexual orientation, intellectual disability.

“But that’s not happening. It’s not happening at all.”