We awoke to a sparkling blue sky day in Arusha. Mount Meru rested peacefully above. My sister-in-law had lived in Arusha for two years, working as a teacher, so she’d teed us up to meet her very good friend Onesmo, a Maasai businessman.
I called Onesmo, who picked us up with his nine-year-old daughter, Siyana, and took us to lunch in a very flash Lebanese restaurant he part-owned. The restaurant was in the upmarket part of town where the British colonialists had erected their grand estates and institutions. The elegant piles, with their broad verandahs and contorted ancient trees in sweeping gardens, were where ‘matters of state’ had once been discussed by district commissioners and officers of the Empire wearing crisply starched uniforms. Many of these buildings were now home to a range of restaurants, offering cuisines from all over the world to the well-to-do of the city, many of whom were expats.
Onesmo, Sam and I chatted while we were served mixed mezze plates, pita bread and lamb kebabs on white linen draped over an outdoor table. The sunlight dappled the lawn and an excellent jazz band played near the bar. This is not too bad at all, I thought to myself. Sam, however, was being autistic, speaking little, drawing his legs up onto the chair and ignoring Onesmo’s attempts to engage him in conversation.
I explained what was going on to Onesmo. ‘He always does this. In a new environment with new people, he goes into his shell. With time he will start to open up to you and you will start to see more of the real Sam.’
Onesmo, who was astute and good with children, didn’t need much convincing and kept trying to engage Sam. And sure enough, Sam soon started to open up. We discussed African political history, including apartheid, Mugabe and Idi Amin, Sam’s school and, of course, our trip and the concepts behind it.
Sam fired question after question at me, while Onesmo looked on bemused. ‘What would happen if you mashed up the leader of Zimbabwe who starts with an M with Idi Amin?’
‘I think you would have a very bad person,’ I replied.
Sam leant forward. ‘As bad as Stalin?’
‘I don’t know, Sam.’ It wasn’t a comparison I’d thought a lot about.
‘I don’t think he would be as bad as Stalin. Stalin was the worst. Do you think Idi Amin would throw me out of a helicopter to the crocodiles if I tried to punch him in the nose?’
‘I’m not sure, Sam. Probably, er, I really don’t know. But you don’t have to worry about that because Idi Amin is dead,’ I said, trying to find an answer that would satisfy him.
Sam pumped his fist near his shoulder. ‘Yes, he died in disgrace.’
Onesmo drove us back to the hostel where I then filmed Morton and Sam playing chess; the score was one all. Sam was a good winner but a sore loser. Morton smiled and shrugged. We all headed out with some other backpackers to a Chinese restaurant two doors up that had a good reputation. It was our second big meal of the day and the second challenging cuisine for Sam, but he did all right, apart from talking incessantly and asking the same questions over and over. We left earlier than the others and headed back to the hostel, both sleeping well that night.
The next day Benison had organised for us to meet up with Kerri, an American special-needs teacher now living in Moshi, a one-hour drive from Arusha. Kerri was the director of programs for Connects Autism Tanzania, the peak autism NGO in the country. Kerri worked with Mama Grace, an inspiring Tanzanian woman and mother of a twenty-three-year-old man with autism called Erick. As a child, Erick’s erratic behaviour and lack of speech meant he hardly got any education at all, despite Grace’s best efforts, and he remains largely non-verbal. Her advocacy largely fell on deaf ears, despite her strong belief that Erick did have skills and intelligence that were not being developed.
Although he was placed in a special-education unit, it was a kilometre from the bus stop in front of the mainstream school; he walked the kilometre alone every day. After a few years, the parents of other children on the bus became concerned that hanging around a disabled child somehow put their own children at risk and encouraged their kids to kick Erick off the bus every day. Mama Grace had to figure out a way to get him to school so she bought a bicycle for him, and worked hard to teach him how to ride it alone, a massive expense and inconvenience that none of the other parents had to face.
As a young adult, Erick faced an uncertain future in a country where there was no vocational training for young people with disabilities. Stuck in a education facility that was just re-teaching him the basic academic skills he already possessed, Erick was floundering, and Grace knew it.
Erick was in the habit of scavenging precious glimpses of television shows he liked by peering through the windows of shops, but he didn’t like football and in 2010, when the football World Cup came to South Africa, every television set in the city was constantly tuned to it. Frustrated and confused when the shopkeepers ignored his pleas to change the channel, he threw some rocks through a store window. There was a furious reaction: a vigilante group was organised and paid for, with the express intention of killing Erick. Grace, alerted to the danger by an informant, hastily convened a community meeting with the police and successfully prevented a disaster.
Still, Erick struggled. Grace refused to give up. When she met Kerri, things started to fall into place. With her new ally, they developed not only the beginnings of a vocational training program for young adults with a disability, with Erick as their first graduate, but also continued to fight for awareness, opportunities and basic human rights for children with special needs in Arusha and surrounding districts.
In Africa, people with special needs and their families face hurdles that go way beyond those that exist in developed countries. Foremost of these is the assumption that children with special needs can’t learn. Why place such a child in a school when they’ll be taking up scarce resources that another child could benefit from?
Second, it is commonly believed that the disability is caused by the family themselves, a result of a sin, a misdemeanour, some piece of black magic or a curse. I thought back to Manga’s village in Zambia. In Unstrange Minds, Roy Richard Grinker describes encountering similar beliefs in black populations in South Africa, where children who seemed physically normal but behaved abnormally were often thought to be ‘possessed by an evil spirit’.
Finally, and bizarrely, many believe disability is contagious. This was a large part of why Erick was kicked off the bus. The other parents didn’t want their children to catch what Erick had.
These barriers, unfair and infuriating, all had to be overcome before people like Grace and Erick could even begin to think about the objectives and hopes that autism-affected families in the developed world aspired to.
We visited the school Erick had attended. It was on a dirt road in the verdant foothills of Mount Meru. As we entered the school gates, curious children in the playground peered at our car. The teachers welcomed us and showed us around the school. There were a few classrooms and a large hall, which also served as a dining area, with bare floorboards and tall barred windows.
As the lunch of rice stew was served, Sam watched the children eat, laugh, play and squabble. I explained that this was an African version of the special-education primary school that Sam had attended back in Sydney.
‘It’s a bit like it, but it’s not the same,’ he observed.
‘No, Sam, it’s not the same,’ I agreed, thinking of the sparsely furnished and dimly lit rooms we had just seen.
‘They don’t have white children. All the teachers are black, too,’ he continued. Fortunately, no one else was in earshot.
A more pertinent difference was that the school catered for a wider age range of children and a diverse range of disabilities. Anyone who didn’t fit in elsewhere ended up here. One of the students was eighteen. Another small boy had cerebral palsy, and a winning smile. He 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 physiotherapist working on. In class he sat on a mattress. Children with Down syndrome were mixed in with those with developmental delay, learning disorders and, of course, autism.
Mama Grace remained head of the parents’ association at the school, although Erick had now moved on. She explained the significantly different aetiology of the disabilities compared with what you would see in Australia: disability resulting from cerebral malaria and other infectious diseases was common, as well as from poorly managed epilepsy, which we had also witnessed among the patients of Butabika hospital in Uganda.
The school faced an uphill battle on several fronts. They constantly had to fight for classroom space with the mainstream primary school next door where Erik had previously exited the bus. That pervasive belief that disabled children can’t learn helped keep this battle alive, as well as their chronic underfunding. It seemed no one not directly involved with the school placed any value on it or the students who went there. It was confronting and disturbing.
After our tour we visited the furniture workshop where Erick had started his apprenticeship. Erick was a tall thin young man with a beaming grin who twitched and jumped around, but it soon became apparent he 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 the functions of the camera myself, I was impressed.
I was also impressed that a young man with autism was able to cope in this environment. The shed was 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 was very excited to see his mum. 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 wondered what Erick would be like now if he’d had the sort of early intervention that children like Sam had benefited from. As she watched Sam and heard his odd but fluent speech her expression spoke less of envy than regret. My heart ached for them both: Grace, with her humanism and sheer energy, and Erick, a good guy who should have been given a better chance in life, but was caught in the reality of disability in Africa.
We said goodbye outside the burger joint. Sam shook Mama Grace’s hand and said thank you in Swahili: ‘Asante, Mama Dis-Grace!’ She was taken aback for a second, and then flashed a broad smile. Sometimes Sam could do with a touch less speech.
At six o’clock the next morning, Sam and I headed off from Arusha on what was planned to be our final animal nature trip in Africa: a day tour to the World Heritage–listed Ngorongoro Crater. Our car headed west through Maasai country, past roadside villages with circular stick fences surrounding mud huts and cattle yards. Locals waited at bus stops in their traditional coloured robes: purples and blues in this area of Tanzania, as well as the reds. After such a confronting experience of nature in Maasai Mara, I wondered whether we really needed another safari, but apparently the crater itself was something to behold.
It was. The steep rim, 2,500 metres above sea level and six hundred metres above the floor of the caldera, was all that remained of a volcanic mountain that had once reached higher than Kilimanjaro. It had erupted and collapsed in upon itself three million years ago, which was a blink of an eye in geological terms.
Our guide drove us up through the misty and wild montane forest on the outer slope, over the crest of the rim, and then down into the caldera. As we descended beneath the clouds the crater opened up before us in a grand reveal.
The thirty-kilometre wide giant cup was verdant and dotted with trees and wildlife. The still air inside the crater was aglow from light that pierced the cloud cover hovering at the level of the rim. It looked like a giant roofed stadium. The lakes shimmered, vapour rising off them as the waters warmed as the day unfolded.
Thorn trees and umbrella acacias, their underside adorned with weaverbird nests hanging like baubles, gave way on the lower slopes to spiky sisal plants that dominated the crater floor. The whole gang of animals was here. Among them, the giant kori bustard strutted in the grass, yellow-billed storks stood guard on the muddy banks and marabou storks and black kites spied from above. A mating pair of ostriches circled each other like Spanish dancers, the female nonchalantly assessing the male’s ruffles and flourishes. We had our first sighting of the magnificent crowned crane, the national bird of Uganda, their outrageous golden mohawks dipping high and low as the gadabout and his mate watched for predators while grazing the fields.
As well as over a hundred thousand animals, a quarter of them large mammals, the crater was also home to fifty thousand Maasai, who grazed their cattle and goat herds.
The Ngorongoro Crater is an ecosystem in which man has existed in harmony with the environment for millions of years, as paleoanthropologist Mary Leakey discovered in 1959. In nearby Oldevai Gorge she found the skull of a Paranthropus boisei, a hominid species that had lived in east Africa roughly two to four million years ago, the first of many significant nearby findings unveiling the origins of man. He was dubbed Nutcracker Man for his large molars.
Halfway through the drive three older lionesses, thin and tired, sauntered towards us. They were indifferent to our presence. One plonked herself under our car, presumably for the warmth of the engine. She was half visible as we carefully looked over the edge of the pop-top roof of the four-wheel drive, her head resting on her paws near the back tyre. How high can a lion reach? She didn’t look too menacing. Sam was excited, if a little nervous. After ten minutes our driver scared her off by starting the engine and gently moving the wheels.
The crater had exceeded my expectations. Sam enjoyed it too, and told me so. Ngorongoro was another phenomenal place in Africa that I’d only vaguely heard of prior to coming here.
The days ebbed and flowed in Arusha. Sam and I got into a rhythm. It was the sort of place we felt comfortable just hanging around, not doing much at all except schoolwork, neuroplasticity exercises, and filming video interviews, including a bizarre interview with the Masai guard dressed in his red robes at the front door, where Sam asked him why he carried a large knife. The guard just laughed. But I knew there would come a time where our feet would start to itch and then we’d move on.
As we sat on the rooftop verandah of the hostel one afternoon, the ever-present noise from the street below started to become very loud. We peered over the railing to see an open truck coming down the road. It was trimmed with the banners and flags of the main opposition political party in Tanzania, and packed with large audio-speakers and men holding megaphones. Music blared while they shouted into the megaphones as loud and as fast as they could.
Within seconds a sizable crowd had gathered and started to chant, some people raising their fists. Suddenly two police trucks, their canvas-covered trays full of policemen, came hurtling down the road and screeched to a halt. The police jumped out, some of them holding up their rifles and automatic weapons. The crowd fled in every direction, dissipating as quickly as it had materialised. The hostel staff were relieved the police hadn’t used tear gas.
This was politics in Tanzania. The five-yearly general election was in two months. While Tanzania was a democracy, it worked very differently here than what I was used to back home in Australia. Nearly all of the advertising was for the government party. A taxi driver told me if the opposition had the temerity to hold a rally, the police (or somebody) would simply cut the power. The spontaneous rally we’d seen, presumably announced on social media or mobile phones seconds before occurring, was a tactic to try to get their message out.
We had been glad to see Morton again at the hostel after our trip to the crater. One evening I chatted with him after Sam had gone to bed. I reflected that the end of our trip now seemed to be rapidly approaching.
He thought for a second. ‘So, what in particular do you want to get out of the weeks you have left?’ he asked.
I considered my answer. ‘I want to maximise his independence.’
‘Then put him in charge,’ he said. ‘In charge of the trip, I mean.’
It would be a leap—a departure from the way we’d operated to date—but I immediately liked it. I’d been theoretically aiming for this throughout the trip, but it had been hard to stick to in such a challenging environment as Africa. Yes. I would push myself to take more risks, and hand decisions over to Sam. From now on the default needed to be that Sam would decide.
‘Yes, from now on Sam is in charge,’ I said.
Morton grinned and nodded. He was also going to travel with us towards Dar es Salaam and his company and travel experience would be welcome.
The next day Sam seemed to take to his new leadership role. There were more firsts, including eating cereal with milk, a major leap forward on the food front. One morning he spontaneously untied and then re-tied his shoelaces without any prompting from me, after only the briefest of lessons the day before. I was seriously impressed.
He was also in a terrific mood. He knew the end of the trip was close, and would tell me every day how many days we had left. The need to allocate a score for the day had disappeared completely, though we did still talk vaguely about positive and negative points at times. I think his mood went beyond happiness at being close to the end of the trip. I sensed he knew he had accomplished something special.
But nothing was ever uncomplicated. One night, in the midst of yet another evening blackout, Sam accidentally upended my beer onto the nearby computer keyboard as he picked up his DS. Sam, distracted by his game, failed to tell me as I lay on my bed reading my Kindle, blissfully unaware. I didn’t discover the truth until several hours later and by that time the motherboard was coagulated with sugar crystals.
Keep calm, keep calm. Don’t lose it, James. There was no point in getting angry, but it was very frustrating. Most of Sam’s schoolwork was not going to be accessible for the remaining three weeks, and I didn’t know how I’d be able to blog and record our journey.
In the morning, with Morton’s help, we found what seemed to be a good computer-repair service in the city and dropped the laptop off. Over the next thirty-six hours the technicians tried to fix it, but to no avail. They said I should be able to recover all the data when I got home to Australia, but still.
Sam was also upset about the death of the laptop. I think he thought my head would explode. ‘You’re not angry, Dad?’
I sighed. ‘No, I’m okay.’
‘I didn’t mean to break your computer.’
‘I know.’
He put his hand on my forearm. ‘You can get a new one when we get back to Sydney.’ I smiled at his concern.
My cobbled-together plan was to use my phone for internet, and to borrow Morton’s laptop to write and blog, keeping all the files on a portable hard drive. We were limping to the finishing line.
But I was buoyed by two pieces of news. My best mate, Matt Rickard, a colorectal surgeon back home in Sydney, was going to be able to meet up with us in Dar es Salaam for six days, and would be arriving in only three days’ time.
I had known Matt since we’d started medical school together at the age of seventeen. After the first two years of university, Matt and I had decided to take a year off—what you’d now call a gap year—and after earning some money for a few months, travel the world. That trip, all those years ago—nine months through India, Europe and the Middle East—had been a large part of the inspiration for what Benison and I had designed for Sam. I strongly felt that this experience had greatly benefited my own development, social skills and worldliness at the time. It seemed right that Matt was going to join Sam and me.
The second development was that Heiress Films had decided to send another cinematographer out for the end of the trip. The cinematographer was going to join us just before Matt left, and stay until a few days before the end of the trip. Much to Sam’s disappointment, it was not to be Max, our first companion in South Africa, as he was now tied up with another project, but that was okay.
I’d have someone to give me a hand, and access to a computer, for most of the time we had left. Even when significant setbacks happened, like losing a DS or wrecking a laptop, you just had to roll with the punches. I was learning this skill along with Sam.