“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.

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.

Portraits of displaced life in Kampala’s Acholi Quarter

Girls returning home to the Acholi Quarter after school.

I recently spent several days in a Kampala neighbourhood called the Acholi Quarter. This slum was formed over 20 years ago by northern Ugandans fleeing from the fighting between rebels and government forces that began in the 1980s. There were 11,000 people living here at last count, but that number has surely risen in recent years.

Grinding sesame seeds and peanuts (also known as “semsem” and “g-nut”). I truly enjoyed eating some local vegetables with g-nut paste!

During the conflict, the Lord’s Resistance Army under Joseph Kony kidnapped young girls and boys to serve the rebels as soldiers or slaves. Civilians were targeted, mostly from the northern Acholi ethnic group. Their crops were stolen to feed soldiers, and their homes burned.

Tens of thousands fled to the safety of Kampala, where they have now lived for up to 20 years. But the Acholi refugees that I met had only found a new sort of trouble. In the slum, whole families live in mud-walled homes with only a few rooms. There is little work except long days breaking rocks in the local stone quarry, a deep gash that runs through the Acholi Quarter.

Lots of children played by chasing tires up and down hills (at least when there were no foreign visitors to follow around!).

Many men, unable to find work or provide for their families, have turned to alcohol and domestic abuse. Women work selling vegetables on the street, or making bead jewelry. Many have lost respect for their husbands and their family relationships are not happy.

After rent, food, and medical costs, many parents don’t have enough many money for school fees for their children. Young girls turn to prostitution and boys drop out of school to work in the quarry. By night, I was told, the streets turn sinister and thugs roam.

Jovino, who works in the rock quarry. When I first met him, his hand was grotesquely swollen from pounding stones with a hammer day after day.  Someone at a tiny local clinic cut the infected area and drained his hand, and Jovino was regaining finger movement by the time I left.

Jovino’s wife making bead jewelry. The couple has 17 children in their household. Some are their own, others are orphaned relatives. Many families I met had taken in orphans.

A butcher in the Acholi Quarter. No refrigeration here, and he uses a whisk to shoo flies away.

 

 

 

 

 

 

 

 

 

 

 

 

Fighting stopped in 2008 when Kony and his army of indoctrinated child soldiers crossed into Congo DRC. With peace and stability returning to the north, the Acholi families here would love to return home. But they can’t, they all told me. It’s too expensive to move their whole families, rebuild their homes, and begin farming again. With their own land, they could grow their own food and escape the high costs and moral decay of their Kampala home, they said. But what would they eat for the first year, while waiting for crops to grow? Many were optimistic that they would return someday, but they could not say how.

For now, the newer arrivals rent homes from the refugees who arrive earlier and claimed a spot. There’s electricity, provided through dangerous-looking illegal hook-ups. A connection to the city water supply is possible, but too expensive, so families pay for each jerry can they need. It’s not a safe or nurturing place to raise a child.

A little girl taking care of an even smaller child…

…and apparently happy to do it.

Two buddies walking arm-in-arm through the Acholi Quarter.

Grinding peanuts into paste by hand. This woman sells chapati, eggs, and other goods by the roadside, and managed to save 75,000 shillings (around $30). She kindly lent that money to another woman, who is now refusing to repay.

I spent my time with Africa Arise , a group started just one year ago to offer personal and family counselling, as well as Christian discipleship. They hope to soon offer job skills training and, finally, resettlement opportunities for the stranded Acholi.

Conditions in the Acholi Quarter and the resulting social problems of substance abuse, violence and hopelessness, all resemble what I’ve seen in any slum or refugee community. Still, the people I met were extremely friendly, and warmly welcomed me into their homes. They seemed excited, even eager, to have a Canadian visitor, especially after I told them I would share their stories with my friends, family, and church back home.

I felt truly touched by their welcome, and by the difficult circumstances I saw. The past decades of violence have left lasting psychological scars. But the people in Africa Arise’s program said the counseling is making a real difference. “It’s released us completely,” one said. “It’s the only good thing here in the Acholi Quarter.”

Neighbours have taken notice of this new peace, and there’s a long waiting list to enroll in the next session. In a place that might look barren of hope, there seem to be some seeds still sprouting.

Like most of the women I met, Lucy has a big bag of bead jewelry that she’s looking to sell. The beads are made by rolling and varnishing strips of paper.

Lucy dyes strings of beads and hangs them to dry outside her home. She was abducted by the LRA rebels and held captive for seven months, until she had opportunity to escape during a battle.

A refugee’s journey to the UNHCR in Nairobi

The Nairobi UNHCR office, which serves all of East Africa. Somali and Sudanese refugees line up outside each morning to file claims or change their applications. Photo courtesy of Cathy Fairley

Last week I had the privilege of touring the United Nations High Commissioner for Refugees. At this Nairobi office, refugees’ hopes for resettlement can either sink or float, but most often they stagnate.

This UNHCR office serves all of East Africa, but staff here are kept busy mostly with Somali refugees who continue to escape their violence-soaked country and pour across the Kenyan border, just as they have for years.

The Nairobi office receives around 100 new refugee claimants each day. That total has shrunk dramatically since the height of East Africa’s famine and drought last year, when 500 to 700 new people arrived each day. The UN’s office here couldn’t handle so many, so that rush created a backlog of 12,000 applications awaiting final approval.

These days, 300 to 500 applicants line up outside the building each morning. During my team’s visit, the lineup was fairly small; most of the daily visitors are admitted inside for processing before noon.

Once past the security checkpoint with metal detectors, guards, and finger print scanning, the refugee claimants come to a small office with staff stationed at desks. It’s not a big, fancy office, but the refugees can conduct business in 25 different languages, thanks to the UN’s many translators.

Since 2008, all these applications eventually have to go through Lucie Gagné, the Canadian who works at the UNHCR as head of refugee resettlement. She approves each case after staff interviewers check if each applicant has a legitimate story and refugee claim. Kenyans have sometimes tried to register on the list for resettlement, or Somalis with violent pasts try to receive status.

Gagné will soon have some help handling the long waiting list of cases, though: the Kenyan government has sent staff to be trained in process, and eventually hopes to take over refugee approvals and registrations. It’s uncertain when those changes will happen or how effective the national government will be.

The Somalis who come to Nairobi are stepping into uncertainty. The Kenyan government doesn’t provide any support for refugees who leave the official refugee camps in Dadaab or Kakuma, but people journey to the capital anyway. The camps are extremely crowded (at one point 350,000 people lived in a space designed for 90,000) and full of violence, and the city offers some hope of income and dignity while they wait for resettlement in another country.

“I think what keeps them in Nairobi, instead of in the camp where they have food and medical care, is they want to do something with their life,” Gagné said. Even this temporary home in Nairobi is a stopgap. Their real hope is to be chosen for resettlement in Canada, Australia, or some other country.

Unfortunately, the dream is a long time in coming, if it ever arrives at all. It can take one and a half years for a refugee application to be approved by Gagné and her team, despite the staff’s frequent 12-hour days.

There are an estimated 100,000 refugees, mostly Somalis, currently living in Nairobi. Only one per cent each year is chosen for resettlement in a new country, and more arrive each day, so most will spend their lives waiting here for a ticket to a “promised land” that may never materialize.

“There’s no prospect of integrating [in Kenya],” Gagné said. “There’s no prospect of going home. You have a lost generation.”

I was surprised at a few things during my visit to the UNHCR office. I had a preconception of the UN as a mostly European or North American organization, but that wasn’t the case. Staff seemed to be mostly African.

But especially surprising was the level of compassion I saw from the people we spoke to.  I expected a cold, bureaucratic machine but instead found people who seemed to offer genuine compassion for refugees and struggle with no being able to help more.

Gagné was even sympathetic of those who try to lie, cheat or bribe to speed up their claim: “It’s desperation, it’s survival,” she explained, and added she would probably do the same in their position.

“As a humanitarian organization, we try to be inclusive rather than selective, but be consistent,” she said, and deciding which families among many worthy cases should be approved for resettlement was an obvious dilemma for her.

Of course, talking later with Nairobi refugees who are waiting for the UN’s help reveals an entirely different opinion on the office’s compassion and mercy. For them, the process is slow, unfair, and dispassionate. But for me, the tour was a remarkably candid and revealing look at a refugee’s search for peace and good people’s efforts to provide security through the world’s flawed systems.

Ubuzima: New life

I recently met some men and women who gave the word “life” a new meaning: Ubuzima.

Ubuzima is a small community of Rwandans infected with HIV. More literally, it’s the Kinyrwandan word for life.

The group of mostly women meets each week at a church in Kigali. Last week, my team and I had the privilege to join them. We sang worship songs together (well, they sang and the Canadians tried to hum along). And when the worship turned into a dance circle revolving around the meeting room, the Canadians happily participated.

Singing and dancing with the Ubuzima HIV support group

Even if dancing for God isn’t a normal activity for this Mennonite guy, the group’s energy and passion was irresistible. Our circle of new friends each greeted us enthusiastically with hugs, and the aura of warm love and community support was strong.

“Do we look sick to you?” asked Mama Deborah, the group’s organizer. She was right, our hosts had an abundance of energy and it was a lot of fun to spend time with these vibrant women as they sang, talked, and prayed together.

Ubuzima has grown to around 60 people, much to the surprise of Mama Deborah. She began the ministry by simply sitting and crying with a few infected women at the church. Although she didn’t give them any material support to ease their lives, the group kept multiplying.

Living with the disease has left many members weak and unable to work most jobs or lift heavy loads. In a country where people carry heavy objects for long distances, that makes daily life extra difficult. As a new way to support themselves, several of the Ubuzima women have begun spending their days creating colourful jewelry, purses, and other bags with newly-bought sewing machines.

One of several sewing machines used by the group's growing business.

My Canadian team and I bought several of their creations. Much as I dislike the dollar signs that inevitable hover over my head as a visiting North American, I was happy to invest in a new business that offers a livelihood to people who would otherwise have little. I hope more customers come and the business thrives.

Having HIV still carries a real stigma in Rwanda, although attitudes are shifting in recent years.  Some of the women who come to the group haven’t told their families and attend Ubuzima secretly.  Earlier this year, a woman died from AIDS. Her family didn’t even know she was infected. But in this small weekly community, they could relax with no shame and no condemnation.

Some of these women were infected through rape during the 1994 genocide. We asked their leader if there was any bitterness or depression resulting from the injustice that changed the rest of their lives.  That depends on the person, she said, but many have decided that they can’t change what has happened to them. They can only look ahead to the future.

Around 170,000 Rwandans are living with HIV, according to the most recent estimates I could find. That’s 2.9 per cent of the adult population; certainly not the worst rate in Africa, but a far greater problem than Canada’s paltry 0.3 per cent.

Note: this is a reflection on my Rwandan experiences, but my team has actually been in Nairobi, Kenya for several days.  More updates coming soon on all we’re seeing and learning here.