Uwimana gives hope to mothers with children living with disabilities

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When a woman gives birth to a disabled child, she can find herself rejected by her husband, family and sometimes segregated from community members, then face the high cost of living.

Sylvia Komujuni, a mother of six, says she had a C-section because the baby’s head was too big for the birth canal. She gave birth to Ambrose Asiimwe, who is now aged six years.

Komujuni’s son, Asiimwe has a larger than normal head extremity described by the doctors as macrocephaly. Also, he was born with a birth defect called Spina Bifida.

“He could not stand or walk. The husband ignored his son for being disabled and later he left me to deal with the challenges and costs of raising the child alone. When I joined Kampala Parents of Children with Disabilities Association-Makindye (KAPCDAM), my son was rehabilitated and now he can walk comfortably,” she says.

Komujuni adds that she has gained skills to generate income through making liquid soap, shampoo, craft and candles. She is able to put food on the table and also provides her family.

Another member, Franciska Lwasa Najjemba explains before she joined the association, she used to feel uncomfortable and shy to move in public with her disabled daughter, Teddy Namugenyi 12 years old. But through counselling and guidance from fellow parents. She loves her daughter and enjoy moving with her.

“My daughter is mentally handicapped and she got paralysed on her left side of body. I am lucky because my husband is also supportive to us,” Najjemba says.

Kampala Parents of Children with Disabilities Association-Makindye (KAPCDAM) was established by parents of children with disabilities in Makindye Division, Kampala city.

Teopista Nalongo Uwimana, a mother of a child with disability, formed it. Through agony she encouraged other parents to form an association which was officially registered in May 2012 under the gender ministry.

Membership to join the association is open to all genders, the members are over 350 women with children with disabilities. Some of the women have been abandoned by their husbands they are poor, unemployed and are raising their children single-handedly.    

Uwimana’s journey

When Teopista Nalongo Uwimana and her husband discovered that she was pregnant with twins, they were over the moon. They could hardly wait to hold their babies.

However, when she was seven months pregnant, she was admitted to Mulago National Referral Hospital in Kampala city, where she had premature twins by C-section.

On January 13, 2001, Uwimana saw her twins: Dickson Wasswa and Doreen Nakato for the first time. However, they were immediately taken to the nursery for two weeks.

Unfortunately, after a month, Wasswa fell sick and was admitted to the hospital. Shortly after, Nakato also fell sick. “She was brought to the hospital and we spent a week there,” Uwimana recalls.

The mother of five says at six months, Nakato was already sitting without help, but her brother wasn't. Because he was growing slower than Nakato, Uwimana consulted a doctor. Fortunately, the doctor assured her that he would gradually pick up.

Uwimana says when it came to sitting and walking, Wasswa was not as active as his sister. She was, however, glad to see that he kept trying to sit and walk. When they made a year, Wasswa was diagnosed with cerebral malaria, but he got better.

Wasswa paralysed

However, Wasswa’s successful fight with cerebral malaria did not mark the end of Uwimana’s troubles. At eight, his legs got paralysed and he would barely walk.

She says she would carry him on her back to and from school every day until she got him a walker. 

“The walker helped him during school time,” Uwimana says.

She says she tried several times to restore her son’s ability to walk in vain. “I took him to Katalemwa Cheshire Home for rehabilitation, but the situation did not change,” she states.

Abandoned

Sadly, Uwimana’s husband could not stand his son’s trying times; he left his family while insisting that their son was bewitched and wasn't ready to deal with it.

“He left at a time we needed him the most. I tried to explain to him our son’s condition was a physical disability in vain,” she says.

Uwimana was caught between a rock and a hard place; she picked up her broken pieces and moved on. Then, she turned what her husband saw as a curse into a blessing.

Providing mothers’ hope

One day as Uwimana was listening to the radio, she heard an announcement from Uganda Society of Disabled Children (USDC) about a one-day, health camp. The announcement was inviting special need children to a health camp.

Uwimana says the camp was a life-changer for her because she met mothers with children who were suffering like Wasswa: “This strengthened me because deep down I knew I was not alone in the struggle”.

After the camp, Uwimana interacted with USDC co-ordinator Geoffrey Katende, one of the organisers. She asked him to organise a camp on Salama Road in Makindye division, where she resides.

“Katende accepted but he advised me to form an association of parents of children with disabilities in my division because it would be easy for them to visit and offer us help as a group,” she explains.

Uwimana was happy because a camp in her area gave her hope. She says she went around her village on Salama Road, inviting parents of children with special needs using a local communication system.

Uwimana also went to different churches, calling upon parents to attend the camp. “The camp was attended by 15 parents,” she recollects.

Since then, she has never looked back, she formed an association called Kampala Parents of Children with Disabilities Association Makindye (KAPCDAM).

Currently, the association comprises more than 350 members, who are parents of children with disabilities. Through the association, mothers are taught how to make liquid soap and shampoo, tailoring, chicken rearing as well as candle and craft making.

Uwimana says these activities have improved the members’ livelihoods a lot because most of them were abandoned by their husbands.

“We also have savings and credit co-operatives organization, where each one of us is required to contribute sh5,000 at every meeting. The money collected is used to buy the materials we use,” she explains.

“I am so glad that I never gave up on my son, and that I held on and still hold the banner for children with special needs in Makindye division,” Uwimana says.

About Uwimana

Uwimana was born to John Mbonaliba and Franciska Kabami of Kisoro district. She is the fifth born in a family of nine children.

She attended Mutolele Primary School, Kitante Secondary School for O’ Level and Makerere a city suburb-based Caltech Academy for A’Level before joining International Institute of Management and Shipping where she attained a diploma in business administration.

She later married to George Wagodo and have four children including the twins.

Benefits

Anthony Lusaggi the administrator, says they have established eight parents support groups around the suburbs of Kampala including Salaama, Buziga, Luwafu, Makindye, Nsambya, Katwe and Kibuye parishes which have received financial support from Makindye Division that has economically empowered the parents.

It has enabled them to start individual businesses such as making liquid soap, candles, small retail businesses, mushroom growing, tailoring that have improved their income and welfare.

Partnership with non-government organisations, including USDC, Good Samaritan Sisters, Motivational Charitable Trust, Open Society Foundation, they have provided medical treatment, clothing, financial support and paying school fees for children with disabilities.

Conducted several workshops with community leaders to support inclusion and learning of children with disabilities which have also successfully opened doors for the parents support groups to access the National Special Disability Fund and the Disability Grant.

They are members of the World Hearing Forum where advocates for a world in which no person experiences hearing loss due to preventable causes and those with hearing loss can achieve their full potential through rehabilitation, education and empowerment.

Teopista Nalongo Uwimana teaching a fellow woman the sewing machine. (Photo by Fred Mubanda)

Challenges

According to Uwimana, they lack space to accommodate their numerous activities such as tailoring, production of the different beauty products, which they produce. Competition of superior quality products is another challenge. 

“Some of our children who get enrolled in the normal schools are often neglected and are sitting in the back of the class without a possibility to learn at their pace”.

“Again, Parents are not raising their voice to change this, because they risk their children being sent away from those schools on the basis of disability,” she says.

She adds that the few available inclusive schools lack both awareness of children with disabilities and do not have enough skills and expertise to handle children through their “Rise up for Child’s Education” supported by OSIEA.

Uwimana says there are limited resources and limited skilled staff, they consist of mainly children with disabilities and their Parents. These are people who are earning very little to sustain their lives. Currently, at KAPCDAM, they have few skilled personnel to train their Parents on how they can effectively care for their children.

Lack of effective participation whereby there is limited involvement of children with disabilities, their Parents or guardians in the formulation, dissemination and implementation of the laws and policies that relate to them.

Women learning how to make liquid soap. (Photo by Fred Mubanda)

Worse than that, even the relevant persons who take care of them are also not engaged in the formulation, dissemination and implementation of such laws and policies. This has led to ignorance and ineffective implementation of the existing laws and policies that could be enforced by them and their Parents to cause inclusiveness in the society.

Children with disabilities always underestimate themselves before others in society. They think they do not fit in the society like other able-bodied children. This is visible in self-pity, loss of self-esteem and non-reporting of human rights violation against them.

Also, they have a challenge in partnering with health facilities in the community to implement the Research Advocacy and Partnership Programme (RAP) project aimed at promoting quality health for children.

The situation is made worse by the service providers and the general public who do not appreciate that to accord their rights is an obligation. Therefore, Uwimana says children with disabilities have grown miserable and lack social networking skills.

Plans

They hope to have a dream of creating a rehabilitation centre where their children can play, study and share information that can facilitate self-reliance amongst themselves.