My name is Mrs. Nankabirwa Betty Muwanga. I am a mother of two beautiful daughters and I live in Ggaba and I’m the founder of Support Disabled Children Ggaba.
What exactly is Support Disabled Children Ggaba?
It is a charity organization supporting disabled children. A large number of them are affected cerebral palsy, a condition locally referred to as “abemigogo”. Others are affected by Autism, Down syndrome, Dwarfism as well as Epilepsy. We are currently supporting about forty-five children whose parents are incapable of looking after them.
What inspired you to start Support Disabled Children Ggaba?
My love for children which I developed while teaching nursery school. I started my career at Barracks Nursery and Primary school and later moved to Nsambya BabiesHome. I worked for twelve years and grew fond of children. I wanted to raise lots of children or, better still look after many incapacitated children.
What was your experience like in the early days?
Eight (8) is the actual number of children I started with, plus their mothers! A storm? Maybe. Imagine a deaf-blind child, unable to feed themselves, unable to sit on their own, unable to speak and with no resources to even buy them the basic needs of food, shelter or clothing! Perhaps I wasn’t ready, perhaps the passion I felt was a little too far-fetched? I had eight of such children in my care and neither did I have the resources. I was just fresh in retirement and had used up a significant amount of my savings. Not the retirement I had hoped for since I had hoped to take care of orphaned children. No, my passion was not far-fetched and yes this was me actually helping children. There was no easy way out even when mothers started informing others and numbers started to increase. I started receiving donations, getting partners on board and with that I’ve been able to move forward.
How does Creative Youth Agency come in?
I partnered with Creative Youth Agency about a year ago. They offered support in terms of healthcare, bringing donors for example from Sweden and Uganda, foodstuffs, and taking the children to hospital especially in emergencies because we have no car, sometimes late in the night. They also work with the mothers in terms of skilling them.
Have you faced any challenges during the course of your work?
Of course. The premises are small with limited space for operation. Most of the mothers are unemployed and they too fall sick. Sometimes the children get attacks late in the night and we have no means of transport. Most of the mothers come without a place to stay and they have to stay in the already crowded area coupled with stigma from various members of society towards the children.
There’s a challenge of witchcraft. Parents of such children mostly opt for witchcraft rather than hospitals. This makes them manipulated by some of the witch doctors. The most common myth by these witch doctors is that the disabled child is a twin but the sibling was merely water hence the child is a curse.
Another challenge is the lack of medicine. Even when the medicine is available, it is quite expensive. Take for example I was once required to take one of the children for electroencephalogram (EEG) but I was told to first purchase my own Ketamine because the hospital was out of it. Cerebral Blood Oxygenation on the other hand, was not yet available.
How best can Government or society be of help?
My outcry is mainly for government to reduce or remove the taxes on some of the drugs used by these people because they are quite expensive. They should also subsidize organizations that are trying to offer assistance in related aspects because these people are members of society and they ought to be helped.
People should stop the stigma towards these people. The main impact on these children is usually because of stigmatization. Segregation should also stop. In my experience, most of the disabled children aren’t cared for by their families. They are always lacking yet those that are normal always have whatever they need yet they exist in these families concurrently.
Schools should encourage able-bodied children not to stigmatize disabled children. It also goes to parents. The ones from humble backgrounds are seen everywhere whereas those from wealthy families are locked up in gates. Their parents are ashamed of being seen with them yet they shouldn’t. this tortures such children emotionally.
It is no secret that most of these women are abandoned by their husbands, have the authorities been of help?
Whenever the fathers of these children are reported for abandoning their children, little can be done to make them take care of their children. This is because most of such men are unemployed.
Are the rights of disabled children protected?
Most people know the rights of healthy children but don’t bother to know the ones of the disabled. Parents and people in general should learn the rights of both the normal children as well as the disabled ones. These people need not be segregated in all spheres of life. They deserve to be given a benefit of doubt. Most are disqualified from employment even before they are interviewed. This leaves them with no option but not to apply for jobs at all yet they can be extremely good at certain jobs specifically such as secretaries.
What is your message to the people as regards disabled children?
Let us work together to change our mindset about disabled people. Let’s stop the stigma. Let us focus on their abilities rather than their weaknesses and make this world a better place for them.