Poverty and Disability in Uganda 4: Children and Mental Health

This is the fourth part of a series of blog posts examining the experiences of persons with disabilities (PWDs) living with poverty in Uganda. Poverty and Disability in Uganda 1: Definitions provided definitions for poverty and disability drawn from the experiences of PWDs. Poverty and Disability in Uganda 2: Emloyment and Marginalization examined issues of employment, isolation, exclusion, fear and neglect. Poverty and Disability in Uganda 3: Wome and Politics discussed issues faced by women: Giving birth to a disabled child, having a disability and facing stereotyping. This blog post will look at the problems of children with disabilities (CWDs) living with chronic poverty.

We have seen how being a woman with a disability compounds the risk of living in poverty. Now consider the plight of a woman giving birth to a CWD. The 2003 report Chronic Poverty and Disability in Uganda gives the following case study:

Thrown out of marriage for having a disabled child.

Jaliya Namwanje is 35 years old, a mother of two sons. She was happily married to her husband (name not disclosed) when at five years one of their sons, Isma, suffered from a bout of Malaria, which later turned into cerebral malaria. For two years the family struggled with Isma. “We were admitted to Mulago for two years, but all was in vain. Despite some improvement, Isma became disabled, unable to talk or even hear. After being discharged from Hospital my routine changed since Isma needed much attention all the time. I was unable to continue working the same way I had done in the past. But my failure to work was resented by my husband who started insulting me and tormenting me with the words: “Move out of my house, have you ever seen a disabled person in our family? Take your child where it belongs.” “I did not believe that my husband was serious, though he kept on insisting and threatening to kill me. In the end he chased me out of our marital home, and asked me to take “my” son with me. But I was 6 months pregnant when all this happened. My husband did not care at all about my condition, or the condition of our disabled son.. So I went back to my parents in Luwero where I stayed until the baby was delivered. After delivery I returned to Bwaise, Kampala to try and earn a living. I rent a small and carry out petty trade business, selling roasted bananas and charcoal”. “I now take care of my two children without any assistance from their father. Isma is now in Ntinda School for the deaf where I have to foot Shs.80,000/= per term for fees. My other son, Isaac, is at Bat Valley Primary School”. “Ntinda School for the deaf has offered to teach us (parents and care givers) sign language so that we can ably communicate with our children, but I am unable to attend as missing work for long means there will not be food for us”. - Jaliya, Namwanje, Bwaise Disabled and Elderly Association

The above case study highlights how women are seen as responsible for disability. The CWD becomes a burden and a curse for the family. What is the Ugandan point of view of CWDs?

Motivation training sessions teach mothers how to care for their disabled children and give them an opportunity to make friends.

Most Ugandan society regards children with disabilities as “unfortunate”, in need of a health cure, incapable of performing all activities that other children are able to perform, and a burden on society, representing a ‘problem’ to be dealt with separately from other children’s issues.
The example of community frustration with the management of Nkokonjeru Providence Home in Mukono which encourages disabled children to grow their own food and to participate in activities that promote their livelihood is a case in point. Because many disabled children are borne into chronically poor families, such children grow up believing that their disabilities are simply an economic and social curse and burden on their families. Evidence from studies carried out by the Uganda Society for Disabled Children (USDC) reveal that disabled children are unable to defend themselves, are often alone at home, and are often undervalued by those around them makes them particularly vulnerable to physical, sexual and emotional abuse. Such children are also less likely than their siblings to attend school, to go on outings, or to experience situations where they have to solve problems or to contribute to household chores. As a result, they grow to be disempowered adults, unable to take decisions, solve problems or take the initiative. As a consequence many disabled children lack self-esteem and confidence which, in later adult years, contributes to high unemployment figures, and consequently to poverty.
Disabled children in particular are a vulnerable group in Uganda because the population’s attitude to disability is influenced by, among other things, ignorance and superstition. The official strategy for addressing disability among children is to educate the disabled in the formal education system and integrate them into local communities. The programme comprises two components: training specialised teachers and developing a nationwide network of district centres to assess children’s disabilities to ensure appropriate education and adequate support systems. However, funding for these activities is extremely limited.
Evidence from the field (Ibanda, Mukono and Iganga) indeed confirms that dependency, social isolation, rejection, vulnerability and powerlessness characterise the experience of disabled children. Many disabled children, especially adolescents, are exploited (including sexual abuse) and are discriminated, denied access to social economic activities. Confirming findings from Penny’s study on school access (2000), the current study also observed that children without disabilities are sometimes cruel to their disabled counterparts, nicknaming, punching, slapping, beating, teasing and bullying.

People with Severe Intellectual or Mental Disabilities do no better:

The study revealed did not come across any organisations working on the specific needs of people with severe mental/intellectual disabilities. Discussions with various professionals working with disabled people in the four districts revealed also that policy was unclear on how this category of disabled persons should be handled.
People with severe mental or intellectual disabilities are particularly vulnerable either when they are not able to access professional institutions, or during the period of transition from institutionalisation towards community-based services. Anecdotal information suggests that gross human rights violations exist both in and outside institutions for people with mental and/or intellectual disabilities, and yet for those housed in institutions a move from institutionalisation often results in people with severe intellectual or mental disabilities becoming homeless and living on the streets, with little or no community support. Chances are also very high that people with intellectual disabilities or mental illnesses are vulnerable when confronted with the justice system. Their testimony is often not taken seriously, they are not regarded as reliable witnesses and they seldom have access to advocates through whom they can speak.

With the above in mind it is interesting to consider this newspaper story about the educational achievements of a young boy, Bukoyo’s Tenywa proves disability is not inability:

IGANGA- Among the Basoga, it is believed that when hard times hit a disadvantaged or vulnerable person, they are like torrential rains that never cease.
The saying strikes a chord with 19-year-old Abdu Tenywa, the young man with a disability who scored 18 points in History, Economics, Islamic Studies and two subsidiary passes in ICT and General Paper to emerge one of the best students who sat for UACE at Bukoyo Secondary School in 2014.
Born to Mr Hussein Isabirye and Ms Fauza Nangobi, the first in a family of eight children was according to his mother born with very weak bones, which made it impossible for him to develop proper legs and arms.
Though he managed to start school at the age of six, Ms Nangobi had to carry him to the nearby St Michael Primary School for the entire lower primary education.
With time, he developed the ability to move on his own, but the legs never developed like normal ones. He walks like a person who is squatting.
At the age of 9, an acute onslaught of diabetes saw his father bedridden, a state in which he has stayed for the last 10 years.
With the bread winner down, the mother was forced to settle for selling pan cakes and farm produce to raise money for the children’s school fees and other needs.
“As you see my husband is down and I have been selling pan cakes and farm produce mainly maize and beans to get for him fees,” Ms Nangobi explains.
That Tenywa managed to study and sit for his UACE exams is testimony that she is putting up a great fight, but the leaking roof of the family’s house in Bulimira village in Busembatya Town Council is a stark reminder of the poverty in which the family still lives.
The family, which is largely dependent on agriculture to provide the bulk of its income, has a love-hate relationship with the rains.
Failure of the rains means diminished incomes, but it is at the same time with apprehension that they receive the rains because of the leaky roof over their heads. That will, however, not dampen the spirits of the family.
“I made it, I made it! Thanks be to Allah for His Mercies. Who am I to get 18 points?” he asks amid cheers from family members.
The headmaster of Bukoyo Secondary School, Mr Ali Kayuyu, attributes Tenywa’s success to hard work.
“We have a devoted staff who always try to give their all, but at the end of the day it is very important that the students work hard and in this case the student played his part,” he said.
Tenywa, whose life so far has been riddled with challenges, is keen on pursuing a law course, but uncertainty over the future still hovers over the family.
“My family is poor and now the remaining hopes are in government to give me a sponsorship at university. I need to do law such that I help vulnerable people like me to get justice,” he says.

CWDs are vulnerable. As soon as they are born they are stigmatized and seen as a burden. The woman that gives birth to a CWD inherits the stigma and prejudice of that birth. Moreover CWDs brought up in poverty often come to regard themselves as an economic social curse to their families. This has the effect of disempowering the child in later life. The newspaper article shows that a lucky few CWDs are able to battle stigma and prejudice to get a good education. Though after getting an education they still face the myriad challenges of PWDs discussed in this blog.