Disabled children: 'Education will help them cope'

By Gladys Kalibbala

After being helped into his shoes by his father followed by some goodbyes, seven-year-old Abel Kakangula cheerfully picks up his school bag and walks to a motorcycle (boda boda) stationed just outside his home. His sister follows close behind. And once safely seated on the bike, they are whizzed off to school on this one hot morning.
 

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All the neighbouring schools declined to admit Kakangula because of his disabilities, his mother Vivian Sekamatte, says. It is the reason he goes to Buddo Parents Academy School – some three kilometers away – which accepted to take him in.

For the young boy, it has not been easy at all, as he needs special attention. For instance, he cannot visit the toilet on his own, so he must be helped.

Before joining his current school, located in the village of Nsaggu in Wakiso district, fellow children used to laugh at Kakangula because of his condition.  “It had turned him into a loner and he would play only with his sister. But in his current school, things have changed as both children and teachers love him,” says his mother.

Only a month after his birth, the boy’s parents were plunged into a trying period of time when his health state took a wrong turn. For them, it was a recurrence of what they had years back experienced with their first born who developed cerebral paralysis before eventually dying at the age of two.

Earlier, after the birth of their first child, Sekamatte continued to sell second-hand clothes while having the baby strapped around her back. And when death came knocking at her door, it took her another five years to settle on the idea of conceiving again.

 “For five years after his [first born child’s] death, I refused to get pregnant fearing to face the same challenges – not until I got enough counseling,” she says. Clearly, losing her first child had traumatized Sekamate.

And when she eventually did get pregnant again, she made sure to visit the doctor many times to confirm that her unborn baby was well. But seven months into her pregnancy, during one of such medical trips, Dr. Samuel Kaggwa checked her and told her there was a problem.

She was advised to prepare for a caesarean birth because the position of the unborn baby (Kakangula) was not proper.

At birth, the doctors noted that the baby had a number of problems – including one to do with his genitals – which until today have not been corrected yet. Doctors advised the parents to monitor his head as they feared it might start swelling.

And indeed, one month later, little Kakangula’s head began to swell.

 “He was treated at Katalemwa and we were lucky the swelling stopped before we took him for an operation at CURE hospital in Mbale,” recalls his father.

The boy missed the crawling phase and only started walking at the age of three.

“Although he cannot speak, he at least understands everything we say while he can read [softly] and write,” says his mother Sekamatte.

Despite his challenges, Kakangula is raring to take on life with as much enthusiasm as any other boy of his age. He has promised his parents that he will strive to become a doctor one day and treat sickly children like him. For now, he enjoys making drawings in his book, of course in the company of his beloved sister. Theirs is a close-knit sibling connection.
 

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“He feels great when we come up to help him with his work. It makes him proud when we praise what he has done at school,” adds his mum.

The abusive mother

Kakangula is not the only one who dreams big even in the face of life’s brutality.

Fellow seven-year-old Hadija Mubiru, who almost lost her life due to her mother’s recklessness, aspires to become a teacher when she grows up.

Many children her age speak highly of their mothers but for little Hadija, it’s a whole different case. When I catch up with her at Victory Kindergarten and Day Care Centre at Nalugala in Wakiso district, she bluntly states what caused her disability. For her age, she possesses a sense of maturity that impresses me as much as it does move me.

“My mother Betty Nambajjwe took to drinking alcohol and whenever she became annoyed, she would throw me around like a useless object.”   

I can see the sadness in her innocent eyes and sense the pain in her voice. Quite frankly, I am moved when she admits that she has not forgiven her mother. It’s easy to understand why she says so: her mother never bothered to take her for treatment after causing dislocations in her chest.

It is even claimed that Hadija’s abusive mother once poured hot water on her then eight-year-old son Shaban (Hadija’s brother), apparently leading to his death a few hours later. She was then reportedly arrested and detained at Entebbe Police for three days, before being set free without being admitted into a hospital for a mental-health examination – to check her state of mind.

Thanks to little Hadija’s paternal grandmother, she got a new lease at life. Her intervention during that difficult time for Hadija potentially proved the difference between life and a sad ending for the innocent girl.
 

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Hadija Mubiru being carried by her grandma Hadija Nalongo. (Credit: Gladys Kalibbala)
 

According to Grandma Hadija Nalongo Mubiru, Hadija’s mother would often leave her husband’s home and be away for several months. She did so six years ago, taking baby Hadija along with her – to God-who-knows-where.

Sadly, she continued throwing her baby down, causing more damage to her body.

“By the time they brought baby Hadija to me, she was a totally disabled two-year-old girl. She could neither sit nor walk. She would only lie in one position, and often messed herself up when the need to ease herself arose,” recalls Nalongo.

The girl’s paternal aunt, Nakato Mubiru, says their home was no longer habitable with the sickly toddler who soiled herself and attracted a lot of flies. On top of that, the sound she made in her sleep due to her strained breathing could be heard by neighbours.

Nalongo grew more and more worried that although Hadija was born with a sound brain, the acute pain she lived with had affected her mental state.

Relief

After trying all sorts of treatment, Nalongo ended up at the national referral hospital in Mulago where Hadija underwent an operation at the Spinal Ward.

That surgery provided much-needed respite with Hadija delighttfully shocking her grandma when she sat on her own only two days after the operation. “I was coming from the canteen and suddenly dropped everything and ran to the doctor’s room fearing she was going to die,” remembers Nalongo, who instead found better news awaiting her.

Hadija knows how fortunate she was and she still relishes that turning point of her life: during my interview with her grandmother, the little girl chips in and proudly tells of how she sat unaided after the surgery.

On the fourth day following her operation, Hadija could stand and walk by clutching onto nearby hospital beds. She was discharged after one week.

 “The swellings in the chest and back remained but at least her breathing improved greatly and she can sit and walk normally,” smiles Nalongo.

‘Fight for their rights’

According to Nalongo, little Hadija’s state was so bad and she believes that some parents would have hidden her from the public. “I took into account her rights as a human being and it was the reason I sought treatment and kept her in the public,” she says.

Nalongo believes that if she had not intervened, Hadija would have lost her normal mental state. She calls upon other parents to fight for the rights of their disabled children, adding that showing them love catalyzes their healing process.

Yet, such accounts are many in our society.

Margaret Nalumansi, a market vendor at Kawuku market, near Kisubi along Entebbe road in Wakiso district says difficult times prevented her from keeping her daughter’s rights.
 

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Nalumansi with her 17-year-old daughter Harriet at their home in Kawuku. (Credit: Gladys Kalibbala)

Unlike the almost 60% of pregnant women in Uganda believed to deliver away from skilled health workers, Nalumansi had prenatal care and delivered  from Rubaga hospital in Kampala.

Health reports indicate that many pregnant women end up in the hands of Traditional Birth Attendants (TBAs) or relatives who are not skilled, hence causing problems to their newly-born babies.

“My beautiful baby Harriet Nakalembe [now 17 years old], was too big, weighing some four kilogrammes [4kg] and that forced the doctors to operate on me [caesarean birth],” explains Nalumansi.

The baby got seizures on the third day of her life and her face got swollen, forcing mother and child to stay in hospital for over a month.

To worsen matters, the baby’s father abandoned them, and Nalumansi who sells groceries at Kawuku market, had to continue working to provide for herself and her daughter. But to make this happen, she would leave her child behind, locked up in the house as she was away at work.

“At one time when doctors recommended that I get a special chair for her to enable her head balance, I couldn’t afford to buy it.”

‘Like other human beings’

Pauline Greenlick, one of the administrators at Bright Kids Uganda (BKU) at Nalugala (organization caring for needy children), says that if parents and guardians of children with disabilities are empowered with just a wheelchair costing about sh125,000, it will make a world of difference to these children and their parents/caretakers.

“Can you just imagine the joy on the child’s face when they realize they can now move independently plus the joy a parent feels knowing they no longer need to carry them on their backs?”

In fact, Pauline adds that this can open a whole new world for the child especially in accessing education.

 “Being able to be out from isolation and mix with other children and play like them will make these children know they are like other human beings. It will help them lead normal lives without worries of stigmatization,” she explains.

Good news
 

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Hadija Nalongo started a  poultry project at Nalugala. (Credit: Gladys Kalibbala)

An organization known as Advocates for Children with Disability (ACD) was formed last year by specialists of children with disabilities from Carlow University in Pittsburgh, USA.

Dr Susan O’Rourke, a professor and director of special education programs at Carlow University and her colleague Dr Mary Burke from the same university saw its need after visiting Nalugala village where they met many children with disabilities.

 Angella Nakato, project co-ordinator for this organization which comprises of over 100 members, explained they intend to make education affordable to many of them. “Giving them education is one way of helping them achieve their independence.”

 As the organization plans to open up a school for these children at Kawuku later in October this year, ACD has also started giving the parents loans to start income-generating projects.

“Parents like Nalumansi will stop locking their children indoors as they will be able to work around their homes,” explains Nakato.

She is right. Hadija’s grandmother Nalongo is one of the examples of this initiative. She has started a poultry project that she says will help her generate school fees for Hadija.