My younger brother was diagnosed with Downs Syndrome when he was born – 22 years ago. At the time we were living in London and he was able to access services to help improve his quality of life.
When he was three years old we moved back to Zambia, and that was pretty much the end of services to improve his life.
There was a school at a local hospital which was for kids with special needs, but whether it was understaffed or not properly skilled workers, Kwangu (my young brother) seemed miserable there. Though he couldn’t (and still doesn’t) speak, there were way we could tell that he was not thrilled to go to that school.
It was also a challenge for my mum, as it was soon clear that he couldn’t be left at the school alone. This meant that she had to spend her day there, making it difficult for her to have a job – at the time we were all kids, so was necessary for my mum to work so both my parents could provide for us five kids that were home at the time.
Sooner rather than later Kwangu left that school. My mum and other concerned parents formed the Parent’s Partnership for Children with Special Needs (PPCSN) in an attempt to provide the necessary services that were missing for their children, all with varying special needs.
It was admiral, but really it was a bunch of (mainly) women, older women, who had no real clue of what to do. They decided they wanted a school that could properly serve the needs of their kids and that of the community, especially as reports would suggest, the policy to provide education to children with special needs was only reaching approximately 10% of the kids that needed it.
PPCSN actually did research, funded by Save The Children Sweden, that was quite astounding, regarding the numbers of kids that had a mental disability. At the time (circa 2003), they found 1,334 children in the nine wards of Lusaka district that had a disability and 96.4% of them received no assistance from government or any other social institution. Slightly over 50% of those eligible to go to school were not in any school. Further to that, it was found that within their own communities:
87% had no access to special education
89% had no access to skills training
63% had no access to rehabilitation
69% had no access to assessment
69% had no access to special care
70% had no access to recreation
46% had no access to health care
That may have been nine years ago, but I doubt very much that a lot of that has changed. If anything there might be more kids living with special needs.
However, my mother and her group, despite those statistics and virtually no source of funding soldiered on. I remember some of the stories my mum would tell us, about parents in the townships who had to chain their child to a tree to ensure they didn’t wander off, while they went to work as they couldn’t find anyone to care for the child. Chain a child like a dog!
It didn’t help that mental disabilities is not a well understood illness and people felt that it was related to witchcraft, which scared them even more to have anything to do with children with special needs. I felt that first hand when my brother had to go into hospital and my parents were out of town at my uncle’s funeral. The nurses were even too scared to give him his medication. My sister and I ended up providing the care that the nurses were supposed to provide.
Eventually PPCSN were to have their school! After some fundraising walks, a fundraising premiere of GI Joe (thanks to the folks over at Paramount Studios), and some goodwill from private citizens, a small community school – Hidden Voice – was established in one of the high density areas of Lusaka.
The school still can’t provide enough for its students, let alone the vast number of kids that could benefit from the services, but it’s a start.
My kid brother is now too old to attend the school, and we have tried to improve his quality of life as much as possible, but he is an example of how bad things can get for kids with special needs when the services just aren’t there. There’s very little we can do for Kwangu now that will improve his educational and skills needs, but that doesn’t mean we’ll stop championing for the services for other kids like him.
I just hope that sooner rather than later people will understand the need to include children with special needs when they refer to access to education for all.