Monday February 26 2018

The untold story of ‘mercy killing’ of disabled children in Uganda

Disability. A child with a club foot. Such

Disability. A child with a club foot. Such children end up being ‘eliminated’ by their parents or guardians to save themselves from the ‘burden’ of raising them. 

By Gerald Bareebe & Luk Dewulf

Over the years, Ugandans have expressed outrage at the persistence of cases of ‘child sacrifice’ in their society. The practice of child sacrifice is perpetuated by witch-doctors, who use infant body parts in traditional rituals they claim bring wealth, good fortune and good health to their clients.
While the rituals of child sacrifice have attracted widespread attention and condemnation, our investigation has revealed a more alarming and deadly practice, one perhaps even more endemic than child sacrifice. The perpetrators of this practice call it ‘mercy killing’, in which parents of disabled children kill them or deliberately allow them to die by starving them or denying them medical attention because of the belief that they are better off dead than having to endure a painful and incurable disability.

Case study
The experiences of these parents are captured in an investigative documentary produced in collaboration with a Belgian national broadcaster VRT, Journalismfund and Uganda’s NBS TV. Our research was carried out in Mukura, a town of 1,500 inhabitants located on the Soroti-Mbale highway.
In our field investigations, we interviewed many parents who confessed to engaging in ‘mercy killing’ essentially because they wanted to save themselves from the burden of raising a child with a disability. Poverty and social stigma force parents to give up after years of frustration.

Some parents also confessed that the act of ‘mercy killing’ is necessary to save disabled children from suffering severely throughout their lives. Although a few parents, especially mothers, talked about the influence of traditional beliefs, after many interviews, we found out that the link between ‘mercy killing’ and cultural traditions remains vague.
To create a safe environment for our subjects to freely share their experiences, and for their own security, we have protected their identities in this article, in which the stories of two women are shared.

Akol’s story

“As a pregnant mother, I was looking forward to giving birth to a healthy child like my other babies,” says Akol (not the real name), a mother of six. “But when I gave birth to him, I saw he was disabled and I was not happy. When we returned from the hospital, even the people at home were not happy. Nobody was happy, because of his condition.”
Akol adds that her husband abandoned her after he accused her of bringing ‘a cursed child’ to his family. She was left to toil alone with a disabled child.

Akol’s situation was compounded by the doctor’s failure to give her a proper diagnosis of what her child was suffering from, which left her with a confused picture of her child’s predicament.
“The legs of my baby were facing backwards (clubfeet), his eyes were not in the proper position, they were too high on his forehead. It was not normal for a human being,” she explains, adding, “His head was swollen, it looked as if he had two heads conjoined together. Even his arms were short. The way the baby was formed from the stomach upwards was not normal. It looked like an animal.”

Akol went to different hospitals looking for medical help to save her child’s life without success. The doctors’ failure to understand or explain the nature and the cause of the child’s frailty led Akol’s family to accept the theory that the child was born with a curse.

After her husband abandoned her, she was faced with the challenge of raising five children in addition to the disabled one. Without a source of income, the situation became difficult for her. More so, she had to contend with societal perceptions and negative attitudes, which made it difficult for her to receive appropriate social services for her child. Her neighbours started isolating her because of her child. They spread negative information that her child’s condition was contagious and could spread to other children in her community and advised all pregnant mothers to shun her. Her own in-laws allegedly rejected her on fears that she would continue to produce disabled children if she remained in their family.

The feeling of stigma, Akol says, led her to believe that her child was a burden that should be eliminated. So she decided to kill him. She first starved him for days, believing that this was a more humane way of ending her child’s life. After a few days, she realised he had become malnourished, but he did not die fast enough. One day, she returned home drunk and felt that she had had enough of the burden. She then went for what she called ‘a direct approach’.

She explains: “I returned home late at night after drinking waragi (local gin). I looked at him and picked him up from the ground and threw him down…I grabbed his neck, twisted it and I strangled the baby. I then listened to his heartbeat and it was not beating, he was not turning, not breathing. When I touched his neck, it was soft, there was like nothing in it. I waited for two hours to be sure he was dead. At that point, none knew he was dead, but later on I realised he was dead.”

Akol rationalises her action by blaming it on the decision taken by her husband to abandon her. She also blames the community in which she lives. She says her husband, her neighbours and her in-laws forced her to act the way she did. Akol further reveals that when she told her neighbours that the baby had died, no one bothered to ask how he had died. This, she argues, shows that they also saw him as a burden that needed to be eliminated.

“I told one of my neighbours and a few people gathered but they didn’t care at all,” she says, adding, “They didn’t even mourn. They just laughed at me.”
While it is not known precisely how many children are killed this way each year, ‘mercy killing’ is believed to be widespread and broadly encouraged among many communities in Uganda, especially in the rural areas.

Apolot’s story

My husband abandone me

Less than a kilometre from Akol’s residence is Apolot’s family, where another case of ‘mercy killing’ happened. We are protecting Apolot’s identity so that she can freely share her experience with us.
Apolot says when she gave birth to her disabled child, her husband abandoned her and her community condemned her.
“When I gave birth to a lame child, my husband did not like it and even other people were ridiculing me,” she explains, adding: “After a period of three months, the body of this child became weaker. Whenever I tried to let her sit down, saliva would come out of her mouth. People started laughing at me, and my husband rejected me.”

Apolot says after her husband had abandoned her, she tried both traditional and modern medicine, but her child’s condition did not improve. Her husband then took another woman, stopped giving Apolot any form of child support and refused to talk to her.
“He would not even help me with money or help me take the baby to the hospital like a husband and wife should do,” she says. “I intended to end her life because I was tired of her and I still had other children to look after.”

Victim. Apolot narrates her story to the

Victim. Apolot narrates her story to the authors. COURTESY PHOTOS

Explaining how she ended her child’s life, Apolot narrates: “I came up with the plan to kill her through a process that would look like an accident. One day, as I was coming back from the bush to collect firewood, I threw the woods down and I loosened the sheet I use to tie the baby on my back. I first opened the upper knot, then I opened the one down and she fell backwards. When I checked on her, I realised she was dead, because she fell down really hard.”

She added: “I checked the neck, because she had landed on it, I realised that she was dead. With all this, I had suffered more than a dog. Then one of my children who was in the kitchen run towards me and said, ‘Mummy why did you kill the baby like that?’ I said there was nothing I could do because the baby was already dead.”

Unlike Akol, Apolot is more remorseful over her actions in part because of the reaction she received from her other children, who realised she had intended to kill their disabled sister. She says a few weeks later, she again felt remorseful when she went to a nearby market and met a mother raising a disabled child.
“I would not do it again because I felt pain in my heart when I met a mother in the market. Her child had the same kind of disability. I felt in my heart that it would have been better if my child would have died of natural causes. I shouldn’t have thrown her from my back.”

Social exclusion and poverty
Although the practice of mercy killing is illegal under Ugandan law, the stories of Akol and Apolot show that it is prevalent in Uganda because of society’s apparent tolerance for it. The situation is made worse by the fact that people with disabilities face oppression and marginalisation in society. There is enough evidence to prove that Akol and Apolot have been excluded and stigmatised because of having children with a disability. Such entrenched social barriers, coupled with inadequate support, forces mothers to take extreme measures.

Mr Charles Aoja, an LC 1 chairperson in Mukura, Ngora District, says the problem has been exacerbated by social attitudes that link disability with weak masculinity.
“A man like me cannot take all my time carrying a disabled child like a non-disabled,” he says. “If a man cannot even carry the normal ones, that one needs time. You see, it becomes a shame to me. That’s how normally some of my colleagues tend to reject those children.”

Disability places families, and especially mothers with disabled children, in an undervalued social status. They are denied full participation in society.
Indeed, in many societies in Uganda, mothers with disabled children make considerable personal sacrifices. They feel obliged to meet the costs of providing for a special-needs child amid many social barriers, including severe social exclusion and a general societal ambivalence regarding the plight of these mothers. It is these barriers that force some mothers to end the lives of their disabled children.

Changed heart. Mary Iculet with her disabled

Changed heart. Mary Iculet with her disabled child.

Clans and extended families put mothers under too much pressure, seeking to understand the causes of disability and casting a blame on the mother. In some cases, mothers were expelled from their husbands’ households for producing disabled children.
“My people started looking
at my child as a problem in the family,” says Mary Iculet, a mother who has a daughter with a clubfoot defect. “Whenever food was served, I had to sit with my child on the side. They did not even want her to share a cup. She could only drink from a separate bottle.”

Iculet was divorced by her husband, isolated and stigmatised by her in-laws. Facing biting poverty and high cost of raising a disabled child, Iculet says, she was forced to seek shelter in her brother’s house. However, a few months later, her brother also asked her to leave his house and go to look for the father of her child. With no job, no money, no family support and nowhere to live, Iculet developed thoughts of wanting to kill her disabled daughter, who she blamed for her predicament.

She said: “I was really frustrated, and I developed an urge to kill this child because I had nowhere to go.”
She was rescued by a good Samaritan in Mukura town, who gave her shelter and food. Despite shock, anger, self-blame, depression and emotional toll she has endured, plus the worries she has for her daughter’s future, Iculet says she no longer has thoughts of killing her young daughter anymore.
“I don’t really have that kind of thinking again
because I have developed hope,” she said.

Dr Dorothy J. N. Kalanzi, a US-based scholar of Ugandan cultures, emphasises that, as a group of people who identify themselves through a common ancestral blood, clans tend to reject disabled children because they think that letting them live reflects badly on their clan, especially clans that perceive disability as a sign of genetic inferiority.

“In many cultures in Uganda, being disabled is seen as an anomaly in society,” she says. “Anything which is seen as not normal creates a stigma and there are different ways people deal with stigma. Some might deflect stigma from themselves. In this way, we are talking about males. They may deflect these kinds of situations from them to females and so forth, to make themselves look good.”