Children with Disabilities

According to the World Health Organization, people with disabilities are 10% of the world’s population. In Uganda, the actual number might be much higher. Nevertheless, this 10% benchmark suggests that there are approximately 3.2 million individuals with disabilities in this country. Among them, well over fifty percent, or 1.6 million, are children.

A vast majority of these children are born with disabilities: spinal bifida (injured or broken spine), cleft lips, club feet (twisted feet), hydro cephalous (big head caused by infection during or right after birth) and cerebral palsy (caused mainly by difficult labour). The most important reason for these deformities in newly-born babies is that in Uganda, 70% of births take place at home. In rural areas, this percentage might be well over 80%. When births take place at home, the necessary health and medical care is not available nor are essential tools and equipment. The inevitable consequence is the birth of a baby with some kind of deformity. There a number of factors for Ugandans’ preference for births at home: cultural beliefs, traditional practices, a lack of health and medical care facilities, and, last but not the least, people’s inability to pay. According to one knowledgeable person, 80% of deformities at birth are preventable.


Parents with their disabled children

Recently, I visited two unique organizations devoted to mitigating the hardships and suffering of these children with disabilities (CWDs).


RWENZORI ASSOCIATION OF PARENTS OF CHILDREN WITH DISABILITIES (RAPCD)

Maali Wilson is the founder and coordinator of RAPCD (pronounced as rapseed and Rwenzori is the name of this region which is in the foothills of the Rwenzori mountain range). Maali is the Administrator of Kagando Hospital located about 40 kms from Kasese where he lives with his wife and three children. However, he spends almost every waking hour outside of his job on RAPCD’s work. On weekends and holidays he is at the organization’s facility in Kasese where he has a rented accommodation for overnight stays.

Maali’s inspiration for founding RAPCD came from his eldest son. Born with a mild form of cerebral palsy, his son has difficulty balancing himself and his speech is also not clear. But, he has a sharp mind and is even able to work on a computer. A three-wheeled vehicle suggested by a friend in 2004 allowed Maali’s son to move on his own. This was the genesis of the idea that eventually became RAPCD.

It took Maali three years before the founding of an organization for parents of CWDs. Born in 2007, RAPCD pursues three objectives: to empower parents of CWDs; to provide medical and rehabilitation service to CWDs; and, to support the education of CWDs. In three short years he has established RAPCD as a viable institution with its own plot of land just outside Kasese on which one building is already used for classrooms, sleeping accommodation and a kitchen. At present, RAPCD maintains 15 CWDs, 6 to 15 years old, including 4 vision-impaired, 10 hearing-impaired and 1 with facial deformity. A bigger building to house 30 more CWDs is under construction and is expected to be ready in February when the school will re-open for the new term.


Maali Wilson with children at RAPCD’s facility

There is a fee of 150,000 shillings, about $75, for each child for a three-month term. But most parents of the chidren are very poor and they cannot afford to pay this amount. So, they end up paying 60,000 shillings per term which includes living accommodation, teaching facility, plus three meals daily. Maali explained that not all parents are able to pay the fees, and, in that case, RAPCD shows some flexibility. Currently, the paid staff consists of a sign language teacher, a teacher of Braille, two other teachers for general subjects, a community-based rehabilitation worker and a cook.

This is quite an accomplishment. To establish an organization on such a foundation in just three years is like a dream for many other groups in Uganda. So, obviously I was thinking about how did Maali achieve such phenomenal growth. He explained that right from the beginning, he was determined and was able to mobilize the support of friends and well-wishers. These folks have been supporting RAPCD in cash as well as in kind, for example, by donating bricks and mortar and labour for the construction of the buildings.

In addition to support from friends and well wishers, Maali has also been able to connect with people in other parts of the world. For example, there is a Canadian Maali connected with on the Internet who contributes funds every month. Similarly, his connection with an American woman through the UN’s online volunteering group resulted in RAPCD receiving a laptop and a digital camera. Other contributions include Braille-oriented alphabetical templates used by vision-impaired children who were so keen on showing off their writing skill, they completed the whole alphabet in minutes during my visit. As well, RAPCD has received type writers and stationery from outside Uganda. There are huge stacks of books, from floor to ceiling, in large prints, published by the National Geographic Society donated by the Alabama Instructional Resource Centre. There are other books and materials donated by Blind Aid, U.S.A.

As I left RAPCD’s facility, I couldn’t help but be impressed by the dedication, zeal and ingenuity of Maali which have led to such dramatic growth of his organization.


ORGANIZED USEFUL REHABILITATION SERVICES (OURS)

Located near the town of Mbarara, approximately three-hours’ bus ride Southeast of Kasese, OURS is the most widely known and universally respected institution in Western Uganda. Founded in 1995 by the Germany-based Christian Blind Mission, OURS provides complete rehabilitation services to CWDs. Kordelia Fischer-Borchert is the director and she explained the two-fold purpose of OURS: 1) to empower CWDs by providing rehab, medical and surgical care, medications, physio- and occupational therapy, counseling and social rehab; and 2) to support CWDs in their integration in the society by working with community members as part of a community-based rehabilitation (CBR) program.

The organization has a staff of 14 people that includes professionals like physio and occupational therapists, a nurse, a CBR coordinator and a social worker. OURS also has an excellent but modest facility for rehab treatment and exercises. There are 20 rooms for severely disabled CWDs and their care givers, mostly mothers. In addition, OURS does a lot more work through outreach and home visits. Thus, in the ten months to the end of October of this year, OURS had completed 4,000 visits including 734 CWDs who were first-time visitors.

CWDs and caregivers who stay at the OURS facility are charged 5,000 shillings, about $2.50 per day for transport and upkeep, as a guideline; but, not all parents are able to pay that amount. Organizationally, OURS is part of the Ruharo Mission Hospital which also houses one of the best eye clinics in Uganda and a general medical service.

In keeping with the principles of community-based rehabilitation, OURS works with the parents’ support group, a partners group and about 40 volunteers in the municipality. OURS also conducts training of teachers on the issues and nurturing of CWDs.


Children at OURS enjoying themselves

RAPCD and OURS are but two organizations that serve the poor and most unfortunate children of Uganda. There are other such bodies in other parts of the country. While the need to assist CWDs is humungous, these organizations are beginning to make a difference, slowly but surely.


ANOTHER TESTIMONIAL

Oliva was a recipient of a tricycle we provided earlier this year. She came to see me last week to narrate her experience. She is very happy with the vehicle and now that she has become mobile, she has started selling charcoal. She fills the carriage of the tricycle with a load and moves around in the neighbourhood selling it. Charcoal is by far the most common fuel used in Uganda for cooking. So, Oliva is supplying a badly-needed commodity.


Oliva on her tricycle

Disability is NOT Inability

Last Saturday, I visited the town of Mtondwe Lhubiriha in the sub-county of Karambi. It’s about 35 kms from Kasese and is right on the border with Congo. The small office of the local association of persons with disabilities (PWDs) was jam-packed with people and more were continuing to drift in. There were about 60 PWDs there – men, women, youth, children, elders, infants. Most of them were mobility impaired. Among them were many who could not walk at all. They crawled on the dirty muddy streets. A few used thongs on their hands but many used bare hands. I noticed hardened animal-like calluses on their knees and hands. There were some in the crowd who were able to walk with the help of long sticks. Then there were those few who had vision and hearing impairment. There were also a few children with physical as well as mental disabilities. And, a few mothers carried their infants with deformities.

Unable to walk, but NOT unable to work

At the meeting, we heard from about thirty PWDs. They described their disabilities and the barriers they experienced in all walks of life. Suffering from abject poverty, they focused specifically on their struggles in making a living. Except for a few who ran their own small businesses, for example, of knitting or tailoring, most of these PWDs were barely surviving. Even for those with their own businesses, life was extremely difficult. Yet, amid their miseries and difficulties and uphill struggles, there were some shining examples of individuals who proved that disability did not mean inability.

Margaret Kinene is one such role model. Margaret was stricken by polio in childhood and has no use of her legs. She moves around by crawling on hands and knees. As soon as I was introduced to her, she was eager to take me to her little stall in the town market. She is a heavy-set woman in her 40s; but she was moving on the unpaved streets going around pot-holes and rocks with the energy and enthusiasm of an able-bodied person half her age. Located besides the town’s dump that attracted goats and chickens scavenging for whatever they could find, the open-air market consisted of 15-20 sellers. Most of them sold vegetables. Margaret was selling potatoes, Matuke (unripe bananas), ground nuts and charcoal. Margaret gets her supplies from whole sellers who bring truckloads from Kasese every day. She was married, but her husband has most likely left her. I was not able to get the details because of the language barrier. But, this is usually the fate of many women with disabilities. She has three children aged 17, 13 and 11, all of them able-bodied. The children also help their mother at the market on weekends. I met her daughter who was too shy to talk to me but gave me a big smile.

Margaret And Daughter

Athletes with Disabilities

Ugandans are crazy about soccer or foot ball as some people call it here. While their national team is far from being at the world-class level, Ugandans love to watch and if they can, play the sport. And, PWDs are just as enthusiastic about the sport as other Ugandans. During my meeting in the town, a number of young men made a point of telling me that despite their disabilities, they could still play a wicked game of foot ball. I did not have to wait too long after the meeting to see them in action. When they started playing football in a small field across from the meeting place, I was amazed to see how quick these young men were crawling, almost running, on their hands and knees. They played the game with a lot of gusto and highly competitive spirit. It was a treat to watch them passing the ball and chasing it and snatching it away from each other. I have an excellent video clip, which, the system here does not allow me to download on my blog. I will share it with friends and colleagues on my return.

Tricycle recipients’ entrepreneurial ventures

During my previous placement, we had given tricycles to a few men in the Karambi sub-county and I was wondering about how they were progressing. The answer to my curiosity was provided by a group from the Disabled People’s Organizations Denmark (DPOD). While visiting the same town earlier on a fact-finding mission, the Danish group was pleasantly surprised that a few of the tricycle recipients had become entrepreneurs. They carry tax-exempt goods like soda, beer and mineral water in their tricycles’ carriages across the border and sell them to Congolese shops. On their return, they bring back salt, oil and other goods to sell to Ugandan shop owners. Because of tax exemption, they make a decent profit both ways. Not bad for people who were struggling to make a living before they possessed tricycles. Another testimonial for our project!

Tricycle and Trade

Week Two

The weather has been a mix of rain and heat. This is supposed to be the rainy season here and it does rain, but mostly in the evenings. During the day and especially in the afternoon, it is unbearably hot; and, when it rains, it rains with fury. Last week, I was caught in a rain storm while walking to my apartment. Navigating muddy and rocky streets with countless pot holes and huge cavities filled with water can be treacherous. And, boda bodas (motorbike taxis) are no good in such wet and slippery conditions. I hope I don’t get caught in the rain again.

It was a quiet week. The highlight was a surprise visit from an individual who could not contain her excitement and enthusiasm.

A tricycle recipient’s visit

Biiara Gatrida had called me a couple times during the week wanting to come and see me as soon as possible. She is severely disabled and is unable to walk. She was the first recipient of a tricycle we contributed earlier this year during my first placement here in Kasese. She managed to come on Wednesday along with her 8-year old daughter, Masika. They came bearing gifts - hand-made articles, a basket, a container and a server made from coconut shells, plus, a chicken. A very healthy live chicken! She was beaming with joy as she presented the gifts.

The tricycle has made a big difference in her life as she is now mobile and does not have to depend on others to take her from place to place. Her own business of basket-making and weaving and handicrafts is going well. She also teaches these skills to others with disabilities. In addition, she is working with an NGO of parents of children with disabilities. She shares her experiences to help the children in dealing with their disabilities. Gatrida has another 11-year old daughter; but, as with many other women with disabilities, Gatrida’s husband left her some years ago. Regardless, she is quite content with her life. She could not stop expressing, in her broken English, how thankful she was for the tricycle.

Gift of a live chicken is considered very special in Uganda. It was a token of Gatrida’s deep gratitude. Most Ugandans would have loved to have received a live chicken. They would slaughter and cook it for a feast. But, what was I going to do with a live chicken? Slaughter it or have it slaughtered? The very idea was revolting. So, I gently told Gatrida that I don’t eat chicken. She was surprised, but accepted my word. I gave the chicken away to KADUPEDI.

Thanks, once again, to all my Canadian friends who contributed towards the purchase of these tricycles. Gatrida provides an excellent testimonial about the difference your generosity is making in the lives of some unfortunate people. A special word of appreciation to Margie and Phil Bott of Ottawa who sparked the idea! I plan to see other tricycle recipients to hear about their experiences. I am also exploring the possibility of building on this initiative through a partnership between KADUPEDI, the local organization, and a Canadian charity. Stay tuned!



Biiara Gatrida (centre) and daughter Masika presenting their gifts