“Disability is not Inability”: Special needs kids in Kenya

Children are expected to pitch in however they can at the PEFA Matumaini Centre.

I’ve visited Kenyan schools before, but last week I met some special students. I spent a week at the PEFA Matumaini Centre (www.pefamatumaini.org) near the small town of Molo, which is home to 23 young people with physical and mental special needs. The centre also supports dozens more disabled children who still live at home or attend boarding schools. The centre works to demonstrate their motto, that “disability is not inability,” to both the children living in their dorms and to the surrounding community.

Mike, one of the older students, relaxes on the centre’s lawn.

During my time here, I had the opportunity to befriend the staff and children. I helped serve a dinner of ugali and beans, and shared a Bible story with the children. We played kickball on the centre’s grass, and later started watching the classic 1980s movie “Karate Kid” (once the popcorn was devoured, most of the audience lost interest and left). A few of the high-functioning boys were always eager to use my camera and took hundreds of photos of themselves, their friends, and anything else they could aim a lens at.

Four o’clock each afternoon means chai (milky tea) in the dining room.

As I got to know the children, I began to wonder just what made these kids “special needs.” For many, I could see why they needed extra care at the centre. Obvious medical problems like spina bifida, cerebral palsy, and epilepsy made eating, washing, or using the toilet impossible without help.

But others seemed like fairly normal kids. They ran and played soccer, chopped wood for the kitchen, and didn’t strike me as particularly disabled. A club foot or a learning disability meant they had been classified as “special needs.”

Harun squeezes water from a pulp made of sawdust and shredded paper. After drying, the charcoal is used for cooking fires.

Some local families, I got the impression, didn’t need much convincing to send their kids away to a centre that provided school sponsorship and food each day. It was a striking difference from how Canadian families react to special needs children, likely a result of different economic capabilities. But how did the children feel about being separated from parents and other kids to live in a compound with such a range of different needs? I never got the chance, or courage, to ask.

That’s not meant to diminish the PEFA Matumaini Centre’s fine work caring for children who have been diminished and marginalized. I really appreciated the centre’s focused motto of “empowering children to reach their God-given potential as responsible members of the community.”

Phyllis was often the slowest to get to church or meals, but always had a striking smile on her face.

The centre provides education sponsorship for kids to attend the area’s only primary school with a specific mandate to integrate special needs kids into regular classes. The school is next-door, just a few steps away from the dorms (still a difficult distance for some of the children). It’s much more basic than a Canadian special needs classroom.

Back at the centre, a volunteer physiotherapist works to strengthen and relax bodies tensed and twisted by years of seizures. The children learn to grow vegetables and wash their clothes, and to make charcoal from shredded paper.

Wyclef’s epileptic seizures have damaged his brain and his body. He can’t walk very well or eat by himself.

Living conditions for these kids aren’t necessarily bad, but they aren’t what I would want. As it does for many Kenyans, diet consists of mostly ugali and spinach or other greens. Beans are twice a week, meat is once, thanks to money from outside donors. Some children have no families able or willing to care for them, so they live at the centre full-time. Others live in the shared dorms just for the school year, then go home for holidays.

Many young people have been given staff positions after their school years finish. With more donor support, the director hopes to add new playground equipment and solar panels for power.

The young people seemed mostly happy, but some can also be obstinate and rude with staff. Have they been conditioned to be more needy or demanding by this childhood of special attention? What is the effect when a child is told they can’t learn or play like their friends?

John suffered a brain injury in an accident, but still loves music and sang for me several times. He always beckoned me to come sit with him, then spoke in a very slow, halting voice.

When does a child need special care, and when is it better to be left to adapt in the general population, as tough as that might be? My  uneducated position is that applying a “disabled” label doesn’t help some children. I saw this at the centre, where children who limped with a club foot where lumped together with children with severe epilepsy and serious brain injuries. People had decided they were slow learners, but my impression was that the diagnosis may have been a bit fuzzy. Maybe they had a learning disability, maybe they could have thrived in a typical Kenyan class.

Catalina, a physiotherapist living at the centre, works with the children when they’re not in school.

I am certainly not qualified to make those important medical distinctions. But I did see a committed staff at the PEFA Matumaini Centre trying to improve skills, self-confidence, and ambitions for a large group of young people who otherwise may not have had many opportunities.

Leonida and George play on the centre’s playground equipment.

Centre director Madam Florence baked a tasty cake on my last day in Molo.

Eyes on the small stuff at Mt. Kilimanjaro

Porters carrying food and gear towards the top on Day 3.

Kilimanjaro is big. It’s Africa’s highest mountain, at 5,895 metres high. It takes at least five days for most mortals to scale its sides. Every day, it rejects some amateur mountaineers and sends them back down the mountain on bouncing, one-wheeled stretchers.

These were clinging to a mossy rock like tiny white trees.

I joined the throngs of tourists who each year hike to the top for beautiful views, bragging rights, and a taste of altitude sickness.

Yes, the big picture was impressive. After a moon-lit hike that started at 1:30 a.m., I saw the sun’s orange glow spread over the clouds from Kili’s frozen Uhuru Peak. There were glaciers beside me and snowy mountain ranges below. I felt higher than the sun.

Dew-dotted flowers, called Everlastings, the early morning of Day 2.

But during the days working my way up this massive piece of rock, I often found myself more interested in the tiny stuff right along the path. Maybe it was because my eyes were usually focused down on the rocky trail in front of me. Maybe it was because clouds covered my view of the mountain  for hours on most days.

Ice crystals formed on the ground after a cold night.

Or maybe it was because the small features proved to be just as impressive as the bigger mountain looming in front of me. I found beautifully shaped plants that would grow into odd giant Senecio trees. I found piles of dark volcanic rock shards which nature had somehow shattered like a huge broken plate.

Radial vegetation on Kilimanjaro’s slopes.

On the chilly morning of Day 2, I was transfixed by dew drops on mountain flowers. On the even chillier third morning, I woke up and walked, crunching,  through strange little strands of ice that had sprouted up from the ground overnight.

And on Day 5, I couldn’t see much of the black mountain ahead, but I kept stopping to peer up at the inky sky full of the closest stars I’ve ever seen.

Very green, very graceful.

My hike up the mountain was good practice for me to enjoy the massive obstacle that I was determined to climb, while also keeping my eyes on each step of the way. There were plenty of striking, beautiful things that I might have missed by being interested only in the final, more obvious destination.

Of course, Kilimanjaro itself made an impression. It’s the biggest mountain I’ve ever experienced. (Here, see for yourself below)

At the top, near Uhuru Peak, watching the sun come up.

Walking the last stretch at the top alongside a glacier.

 

 

 

 

During this Kilimanjaro climb, I also registered something I don’t always notice: my ego. Hiking up with five Tanazanian guides and porters to help carry all my warm clothes and cook my food was a somewhat humbling experience.

I only found a few examples of this mountain flower.

I like to travel partly because it makes me feel independent, capable, and adventurous. But I didn’t particularly feel that way when I arrived at a campsite where my tent was set up for me, my food was cooked and served to me, and I slept in one tent while my five helpers shared another one.

Kilimanjaro is a challenge for most tourists, but I can’t imagine climbing the mountain while hauling two huge, heavy bags on my shoulders like the porters. I had to get over my discomfort with receiving all this help during the first few days.

I did, eventually. This is the reality of how people reach the top. I couldn’t have done it without the help of others (or at least wouldn’t have enjoyed it much), and once I accepted and felt grateful for that, the mountain became a little more beautiful.

Mountain vegetation gets sparse as we near higher elevation.

Crushing stones in Kampala for 10 cents a bucket

A tool of the trade, which I wielded like an amateur.

The “clink, clink” of hammer hitting rocks is the soundtrack of the Acholi Quarter. Like an unsteady metronome, it counts out hours and days here in the Kampala slum.

Churchill breaks a rock from the quarry wall in his corner of the Acholi Corner’s biggest employer.

A rock quarry cuts through this hilly neighbourhood of tin-roofed wood and mud shacks. The steep canyon of brown stone and dirt runs alongside homes and streets where children play. It’s interrupted by a main city street leading to Kampala’s large Nelson Mandela football stadium, where the slum fades into urban development.

For most men in the Acholi Quarter, extracting stones and turning them into gravel for construction projects is the best work available.They break rocks with sledge hammers and steel wedges made from old car parts. Then, they carry the chunks to other workers sitting by the roadside who bash the rocks into gravel. They’re paid for each 20 litre plastic jerry can filled, with prices ranging from 200 to 300 shillings (eight to 12 cents) depending in the size of the crushed stones.

Finding the right crack to attack takes a practiced eye.

The first refugees who arrived here from northern Uganda, running from the atrocities of Joseph Kony’s Lord’s Resistance Army in the 1980s or 1990s, claimed an unofficial share of the quarry on a first-come, first-served basis. Division lines are marked on the rock walls with black steaks from burned rubber tires. Those owners now hire others to help bludgeon the earth into measly profits.

Carrying a piece of future gravel towards its close encounter with a hammer.

During my time in the Acholi Quarter, I spent a few hours with the men doing this job. For someone raised in a developed, industrial country, where so many jobs involve air conditioning, computer screens, and barely breaking a sweat, it was hard to comprehend that some people broke rocks all day to provide for their families.

My new friends, Churchill and Jovino, demonstrated their work for me. I was hoping for a fully hands-on experience, an expression of solidarity with the men who did this job for so many years. I did carry a rock chunk from quarry to roadside, then sat down for a few minutes to smash it into gravel. I managed not to crush my thumb, but my technique was poor and it would have taken me all day (at least) to fill one plastic bucket and earn my 10 cents. The experienced workers can fill a dozen jerry cans in a day.

The black ash from burned tires marks the borders of each person’s area.

My hosts didn’t let me get too dirty by working for long. I was also the target of some strange looks as passers-by observed this visitor with a hammer in hand. This is what workers here do in the hot Ugandan sun for nine hours a day, six days a week. If they’re less lucky, they are hired less regularly and can’t earn money each day to pay their rent and children’s school fees.

Jovino demonstrates how to break stones into smaller stones.

It’s not safe work. There are no hard hats, safety goggles, or fences around the quarry’s high edges. Churchill has a gapped smile after a chunk of rock flew into his face and knocked out a tooth. Jovino’s hand was grotesquely swollen and when I first met him, a somewhat common injury that results from the constant pounding of hammer on rock.  It had to be drained and infected tissue removed. Another man’s foot was bloody and bandaged after stepping on a sharp shard. Men have died when an unstable rock wall collapses and crushes the workers at the bottom of the quarry. Even worse, playing children have run off the edge and fallen to their deaths.

Churchill has slowly chipped away at the quarry for 14 years.

Although the job is hard, the men I met wondered what they would do once the rocks were finally all gone. Each year, the quarry is dug deeper and available rock shrinks.

Seeing this work made me overwhelmingly grateful for the job opportunities back home. I can be confident that as an educated Canadian, I will never have to do such dangerous, boring, difficult work to survive. The industrial world’s job market and government supports make such a life nearly impossible. What a privileged and easy existence I have, completely unearned, simply because of my birthplace.

You can read my previous blog post about the Acholi Quarter by clicking here.