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
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