Erick and Mama Grace Part 2

Kerri, Grace, Harriet (an English admin support officer for the NGO), Sam and I went out to the school that Erick had attended.  Winding up a dirt road in the verdant foot hills of Mount Meru, we entered the school gates as curious children in the playground peered at our car. The teachers welcomed us and showed us around the large central room of the school that also served as a dining area for the children’s lunch.

As the rice stew lunch was served, Sam watched them eat, laugh, play and squabble. I explained to him that it was an African version of MUSEC, Sam’s special ed primary school that he had attended back in Sydney.

‘It’s a bit like MUSEC, but it’s not the same.’

‘No Sam, it’s not the same.’

‘They don’t have white children.’

‘That’s not what I meant.’

‘All the teachers are black too.’

Fortunately nobody heard this.

Apart from the obvious difference that Sam had pointed out, the school catered for a wider age range of children (there was a young man aged 18 still attending) and a wider range of disabilities. Anything that didn’t fit in elsewhere ended up here.

A small boy with cerebral palsy and a winning smile was being fed on the lap of one of the older girls. He couldn’t walk and I noticed his lower leg contractures, which I would have loved to get a physio working on. He attended school on a mattress. Children with syndromic appearances were mixed in those with developmental delay, learning disorders and of course, autism.

Mama Grace, head of the parent’s association at the school,  explained to me the significantly different aetiology of the disabilities compared with what you would see in Australia. The ravages of cerebral malaria and other infectious diseases were common, as was poorly treated epilepsy,  which we also witnessed among the patients of Butabika hospital in Uganda.

The school itself faced an uphill battle on several fronts. Classroom space was constantly fought over with the mainstream primary school next door. That pervasive concept that disabled children can’t learn and teaching them is a waste of time helped fuel this battle, also the chronic underfunding the school faced. It seemed almost anyone who was not directly involved with the school didn’t place value on it or the students who went there.  This was confronting and disturbing.

After we had finished our tour we headed off to a furniture workshop, where Erick had started his first apprenticeship under the supervision of his mentor, Emma. Erick was a tall thin young man who twitched and jumped around but you soon saw he also got things done around the workshop.

He also had some smarts. He was fascinated by my camera and after grabbing it from me, figured out what all the buttons did and how to navigate the menu in seconds. Considering I still didn’t know half of this, I was impressed.

I was also impressed how a young man with autism was able to cope in an environment filled with sensory challenges that would stress most people. Ear-piercing screeches from lathes, drills and industrial saws echoed through the sawdust-filled air. Erick also had some features of Tourette’s, which with his limited speech, were half swear words in English and half sounds, and these became audible again once the drill noise had stopped.

Erick got very excited when his mother, Mama Grace, arrived (a few minutes after we had); he was tired from his morning’s work and he knew her arrival meant it was time to leave. We went to a burger joint in town as a special treat for both Erick and Sam. Erick  communicated in his unique way, Sam talked incessantly about Harry Potter, and we all had a nice lunch.

Grace had mentioned to Kerri that she had wondered what Erick would be like if he had had the sort of intervention early in his life that children like Sam had had. I observed her look not so much in envy but more regret at their circumstances as she watched Sam and heard his odd but fluent speech. My heart ached for them both; Grace in her sheer humanism and energy, and Erick, who was a good guy who should have been given a better chance in life, but was caught in the circumstances of disability in Africa.

We said goodbye to them all outside the burger joint. Sam shook Mama Grace’s hand.

‘Asante  [thank you in Swahili], Mama DIS-Grace!’

Taken aback for a second, she then flashed a broad smile. Sometimes Sam could do with a touch less speech.