Saturday, October 27, 2012
SUPPORTING CHILDREN WITH DISABILITIES AND THEIR PARENTS
Accomplish Children’s Trust was founded in 2008 to support the work of two local organizations in Kasese district in Western Uganda. These two organizations SADICH (Save the Disabled Child’s Home) and RAPCD (Rwenzori Association of Parents of Children with Disabilities) were set up by Ugandan parents of children with disabilities.
Biira Agnes (founder of SADICH) recognized the difficulty of bringing up a child with disabilities, both in fighting the negative attitudes towards disabilities, and also the financial implications of providing for the increased health and educational needs of the child. Together with other parents of children with disabilities, she established SADICH to promote children with disabilities and enabling, encouraging and supporting parents to look after them.
Maali Wilson is the founder of RAPCD. His eldest son, Khembo, was born with Cerebral Palsy. Maali and his wife were proactive in seeking medical health and saw their son being able to walk and attend school, (he is very good with a computer). Other people in the community were amazed at what Khembo was able to achieve. Maali realized that many people did not know what was available to help children with disabilities, or the potential that these children had. He also realized the financial difficulties many of these families faced in accessing available facilities. RAPCD was established to help these families.
From 2005-2008 Rebecca Cornish worked as a physiotherapist in Kagando hospital in Kasese. She recognized the huge need to treat children with disabilities in the community. Towards the end of her time in Uganda she was introduced to both SADICH and RAPCD. She was impressed with their vision and the work they were doing with such meager resources. She secured some funding for land and carpentry and tailoring tools to set up vocational training for people with disabilities. But, she struggled to secure more support.
On leaving Uganda she set up Accomplish Children’s Trust (ACT). Her vision: TO ENABLE CHILDREN WITH DISABILITIES TO ACHIEVE THEIR POTENTIAL.
Rebecca (second from right) with Edd, Maali Wilson (on left), his wife and children
Accomplish Children's Trust’s three objectives are:
• To advance education for disabled children and their families;
• To enable medical relief and treatment for disabilities of all types effecting children and young families; and
• To provide a Christian response and social outreach to children & young people with disabilities and their families in Africa.
In last four years, ACT has supported SADICH and RAPCD in a variety of ways: sponsored deaf and blind children, bought goats and chickens for income generating activities, paid for salaries of vocational training teachers and a community-based rehabilitation (CBR)worker, run a craft shop, supplied bicycles, paid for special needs teachers, built toilets, provided desks. beds, books and mosquito nets, provided sign language training, provided water supply and helped wire the building s for electric supply, and much more.
This kind of support has helped SADICH and RAPCD to establish themselves, stand on their own and secure support from other sources. Thus, ACT has given them the “wings” to be able to fly on their own.
Friday, May 18, 2012
14-yr old Mbambu Sylvia is vision-impaired and lives in Kibota village in Maliba sub-county of Kasese District of Uganda. Her mother, Virina, does not live with the family because Sylvia’s mentally disabled father threatened to kill her.
Under the circumstances, Sylvia heads the family and takes care of her two brothers, Masereka Nicson, 11, and Kule Nelson, 9, and her younger sister , 12-yr old Biira Monica who also has low vision.
When Sylvia’s father goes out, he collects and brings home whatever his eyes can see and his hands can reach like dead chickens, left-over foods, rotten goods, dirty filthy materials, grass, whatever. This makes mess in the house and even poses health hazards. On top of all this, some neighbours have been taking advantage of the situation. They buy land from her father for very little money in return. Sylvia is worried that soon they will become landless.
Treatment of her father is wiping out family savings fast and this has affected Sylvia’s and her sibling’s education because the family does not have the funds for their school fees and expenses. In addition, she has to also pay for her father’s medical treatment and her family’s daily living expenses.
She is desperately looking for help with about $400. Please help this young woman. Whatever amount you can contribute will be gratefully accepted. Please respond.
Saturday, May 5, 2012
47-year old Bwambale Alone was on his way from Kasese in Western Uganda to Kampala, the capital, by bus on Thursday, April 26th. Shortly after 1 a.m., the bus overturned in the middle of the road. The accident completely crushed Alone’s right arm and the doctors had no other option but to amputate it. He was already mobility-impaired before the accident, and now with his right arm gone, he has been completely crippled.
Alone, pronounced as Aalone, has been a teacher of Geography and History in the local school. He spent most of his time outside school hours on the work of Kasese District Union of Persons with Disabilities (KADUPEDI). He has been serving the organization as General Secretary for over 15 years. His fateful trip to Kampala was also on union business.
With his friendly smile and warm greetings, Alone undertook any and all kinds of tasks on behalf of the disabled community whenever he was asked. He always spoke his mind; and, whether others agreed with him or not, they respected his honesty.
Alone’s paltry salary as a teacher was the main source of family’s income. This was supplemented only minimally by earning from a rented property. But, combined, these sources barely sustained his large family.
Now with his lost right arm and the pre-existing mobility-impairment, it is not likely that Alone will be able to continue teaching. The loss of his salary will place the family in an extremely precarious situation in meeting their daily needs in addition to paying for medical bills which keep piling up. Under the circumstances, it is also doubtful whether his children will even be able to continue their studies.
Sunday, March 4, 2012
Bakonzo is one of the tribes of Uganda and Kasese is inhabited by these people. A very proud and traditional people, they came to Uganda from the Congo some 200 years ago. Despite the passage of time, they have retained their hritage, traditions and culture.
Robert, a 36-year old man, whom I met at an Internet Café a couple of years ago, belongs to this tribe. His father died ten years ago of asthma. He has a secure job at the Municipal Health Clinic that also includes subsidized living quarters.
He had just about everything a man in his situation would want except for one thing. He did not have a “woman” (that’s how wives are usually addressed around here). “I find being in a single life a challenging task” he has remarked many time. It is most unusual for a Bakonzo man of 36 not have been married. The reason? He did not have the means to give away twelve goats to the woman’s family.
Well, as months passed by, Robert felt increasingly desperate, and, supported by family and friends, he made the plunge. But, it is not easy and straightforward for a Bakonzo man to get married. There is a well laid out system which no Bakonzo man dare deviate from. Here’s how Robert described it.
He first asked his friends, who know him better, to look for a woman for him. After about a month, his friends suggested three women for him to choose from. Robert met with each and finally settled on 2l years old Gevina Kabugho who lives with her farming family in this tiny village where inhabitants grow coffee, cassava, avocado and lots and lots of bananas.
Gevina and Robert
When I asked Robert about why he settled on this woman, Robert listed his criteria: family background, attitude (willingness to take Robert and his family as they are), education (her as well as her siblings’), clan, religion, and, whether anyone in the family had been inflicted with a disease like epilepsy (because epilepsy is considered an inherited disease). “But Robert, where does love come in the picture?”, I asked. Robert’s answer, “love will be there and it will come as we live together”.
Once Robert had chosen the woman, preparations were underway for the marriage introduction ceremony. Well in advance of this event, the bride’s family sent a list of items they expected from Robert’s family as dowry. This list can be very long and usually begins with twelve goats. In addition, the list for Robert included: suits for his in-laws, a gown, a blanket, a pair of bed sheets, a six-inch mattress, 50 kgs of sugar, one box of soap, twenty litres of paraffin, food and drinks, allowance for transport and last but not the least, Ekisimu, a gift of love which usually remains a secret between the bride and the groom.
On this day, we first met at Robert’s home in the village of Maliba. There were about fifteen people including Robert’s siblings, cousins and close friends. Everyone was very enthusiastic and excited. There were the seven goats that would be given to the bride’s family. Other five goats would be given later. As head of the family, Robert’s oldest brother (cousin) was in charge. He first went through each item of the dowry, and also showed us an envelope with one million shillings in cash. This was not in the bride’s family’s list, but it was included as a gesture of honour and respect.
To begin the marriage introduction ceremony, the goats were herded through the house. Goats are very special to the Bakonzos, and making them go through the house is considered a good omen especially if the goats urinate in the process. Just in case any of the goats would not oblige, water was poured on them as they passed by. This was followed by a prayer led by an older relative of Gevina. After welcoming words and other formalities, the suit case full of dowry items was brought in. The very first thing Robert’s cousin handed to Gevina’s family was the envelope with one million shillings. Each of the other items was individually shown to Gevina’s family. It was clear from the expressions on their faces that they very pleased with the dowry and they gave their thanks to Robert’s family. Instead of giving the ring, one of Robert’s cousins gave Gevina a neatly wrapped package that contained Ekisimu, the gift of love from Robert.
Conspicuously absent from the ceremony were the groom, Robert, and his mother. I was told that they were not supposed to witness the giving of dowry. Female members of Gevina’s family were also absent even though Robert’s sister and sisters-in-law were present. Perhaps they were busy preparing lunch, I was informed.
I have talked to Robert and a few other Bakonzos about this practice of dowry. They explain that giving of dowry indicates the groom’s and his family’s respect for the bride’s family, and also reassures the bride that the groom is capable of looking after her.
The marriage introduction ceremony is like an engagement, and there will be two more events to take place before Robert and Gevina would become husband and wife. First, there will be the “give-away”, at which Gevina would be formally given away to Robert and his family. This will be a huge event with over 500 guests, lots of feasts and merry-making. Finally, there will be the wedding ceremony followed by a Church service for the official and final stamp of approval. Robert’s plan is to hold the give-away ceremony in May to be followed right away with the wedding. From the beginning to the finalization of marriage, it can take a Bakonzo man several months and 15-20 million shillings.
Goats herded through the house
There are uncanny similarities between the Bakonzo marriage tradition and the practice of arranged marriages and dowry which continues to this day in some parts of India. But, there is a major difference. In India, the dowry is expected from the bride’s side, not from the groom’s family as is the case with the Bakonzos of Uganda.
Friday, February 24, 2012
Agape (meaning “love” and pronounced as aagaapay) of Hope is an indigenous non-governmental organization in Kasese. The organization was founded in 2005 to empower female youth with skills and knowledge to uplift themselves from poverty and destitution.
Elias Bwambale, a teacher in his 40s, is the key organizer of Agape of Hope. He was appalled by the plight of young women, victims of economic and social forces. In depicting the issues of female youth, he points out that:
· 25% of the female youth by the age of 14-19 years become sexually active due to lack of sex education and redundancy.
· 40% of the female adolescents are either raped, defiled or have early marriages.
· 70% of the women by the age of 19-22 become pregnant and end up being single mothers.
· About 50% of the female youth are involved with multiple partners exposing themselves to HIV/AIDS and other STDS.
· Unwanted pregnancies and unsafe abortions sometimes causing death are on increase.
· Rampant infringement of female rights terms of sexual violation and other health related problems cause infertility due to STDs, mental illness and other substance abuse.
He also points out the causes:
· Peer group pressures
· Lack of proper parenting
· Broken cultural identity/background
· Migrations due to insecurity caused by violent conflicts
· Ignorance and a lack of awareness
· Some societies encourage early marriages
Currently, Agape of Hope has registered ten young women, six of whom are single mothers. With its extremely limited resources, the organization conducts education and training in reproductive health, HIV/AIDS and human rights, and, vocational skills training in tailoring.
Education classes are held every Friday, sometimes with a speaker from outside. As well, talks are given at the churches on Sundays to raise community awareness and garner support.
Tailoring classes are ongoing and held every day led by a teacher with 30 years experience. Women come to the class with their young ones and let them loose to play outside. Because of a lack of space, cutting of material is done in the open behind the small facility. There are only four sewing machines, so, the women take shifts. Training lasts from eight months to a year and upon completing their training, the women are encouraged and supported in finding work or become self-employed as tailors. Five women are already working for themselves and are making a living.
Elias teaches in a private school for two hours every day and spends most of the rest of his day looking after the affairs of Agape of Hope. Edith, 20-years old, helps him in this work. There is a board of directors of seven committed individuals who have been contributing to meet rental for the cramped three-room house on the outskirts of Kasese town and running expenses. This barely keeps the organization afloat. To compensate the tailoring teacher, each woman contributes 20,000 shillings (less than $10), and 5,000 shillings for registration. But, a lack of financial resources is hampering the progress of Agape of Hope, and the organization is unable to help many more young women or to acquire more sewing machines or to undertake other activities for them. Still, with undiminished commitment and enthusiasm, Elias and members of Agape’s board continue their efforts to mobilize support.
Agape of Hope, P.O.Box 427, Kasese, Uganda (E-mail: firstname.lastname@example.org)
Wednesday, February 15, 2012
Four-month old Namande Rhodha was a perfectly healthy baby until she caught meningitis. Her parents, Ronald and Rose, took her to the hospital, one of the best in the country. When they brought her home, Namande had a damaged brain and had lost her eye sight and hearing. To this day, they have no idea of what kind of treatment the hospital gave to their daughter to cause such extreme disabilities.
Today, Namande is nine. All these years, Ronald and Rose have been experiencing a prolonged night mare. They have four other children, two are older than Namande and two are younger. They live in Luwero, a small town west of Kasese. To sustain a family of seven has been difficult, so, the matter of paying for specialized treatment and care for Namande has been out of the question. Often, there were tensions between the parents each blaming the other for bringing on this curse. Then there were all kinds of advisors giving all kinds of ideas. Some people urged them to go to a witch doctor. Others advised them to lock up the child in the house. A few folks even advised Ronald to leave Rose and let her care for Namande and the family.
Ronald and Rose paid no heed to these advisors and stuck together. Despite a constant struggle, they continued to look after their daughter as best as they could. But, communication with their daughter has been their biggest challenge. Namande has no language skills or comprehension of sign language. She cries when she is hungry and that is a signal to feed her. Family members have found similar ways to engage in minimal communication with Namande. They have also started learning and using tactile language. But, engaging Namande in conversation remains their major problem.
At first, Rose stayed at home to care for Namande. When the older children were able to bath, feed, change and look after Namande’s daily needs, Rose started attending their small family business. But, she keeps going back and forth from home to business throughout the day to ensure Namande is looked after.
Ronald is on the board of the Uganda Association of Parents with Deaf-Blind Children. Working with this organization has meant a lot. As Ronald told me, before joining the board, they thought that they were the only unfortunate couple who had a child with such severe disabilities. At the association’s meetings, they learned that there were other parents with similar, and even worse challenges. Ronald also advocates and lobbies on behalf of parents. He hopes that the association will be able to secure greater support from various levels of government so that one day, Namande’s care can be improved and, if possible, she can be treated.
This is the second such case I have encountered in last two weeks. I have asked around about what recourse, if any, do parents have in such situations. I understand that there are laws in Uganda for parents to take action against a hospital or a medical practitioner. But, many people, especially those like Rose and Ronald, who live in small towns and villages are either not aware of these laws or do not have the time and money for legal action which can be very long and expensive. So, they simply accept their situation and try to cope with it.
Friday, February 3, 2012
The purpose of VSLAs is to financially help the poor in the developing world. However, a VSLA does not receive any external capital to give as credit to its members like a typical micro credit institution which gives out credits. A VSLA, on the other hand, begins by emphasizing and getting groups members to save first. Their group savings go into a common fund out of which loans are advanced to members based on the criteria agreed by the group.
The Muhokya group was organized by the Kasese District Union of Persons with Disabilities (KADUPEDI) in October last year. Its membership includes both, persons with disabilities (PWDs) and able-bodied individuals. Of its 28 members, 14 are PWDs (8 men and 6 women) and the other 14 are able-bodied.
The group received some seed funding from external sources in order to get organized and group members received training from Mirambo Barnabas, an experienced facilitator of VSLAs whom I have known for two years. He has facilitated establishment of several VSLA groups and he attends group meetings to help them with unexpected issues and to guide them in the right direction. However, all decisions are made by the group which has an elected chairperson and treasurer. The group meets at 3:00pm in the afternoon of every Thursday, but, it being the cotton-picking season, these days attendance is not always full. Yesterday, there were 25 members in attendance.
Financial management of the group is simple. Each member contributes a minimum of 1,000 Uganda shillings each week in the savings fund. Those who can afford to contribute more may do so, but, to ensure that no member dominates the group, there is a limit of 5,000 shillings per week per member. Each thousand shillings is equivalent to a share. There is a group record book in which all transactions are recorded by the treasurer and there is also an individual record book for each member in which their savings and loans are recorded and verified by the treasurer with a rubber stamp.
As for the loans, the group reviews each request and decides on which request to accept. The two main criteria are: how well has the member served the group and what is purpose for which the loan is requested. Most of the loans are advanced for starting a new business or expanding an existing business or for investing in farming. At the end of each month, if a member earns enough income, he/she may pay back the loan. If not, they pay an interest of 10%, the rate that has been agreed to by the group. So far, 13 loans totaling approximately 260,000 shillings have been advanced.
Perhaps the most fascinating aspect of the groups’ financial management is their system of banking. Instead of depositing funds in a commercial bank, they store all their funds in a small steel box. The box has three locks and three different individuals keep the key for each lock. So, one member cannot open the box by her/himself. And, the box is always opened at a meeting in presence of everyone. At yesterday’s meeting, after opening the box, the treasurer tallied the funds in the box with the record book and sorted out a couple of minor discrepancies.
After a few other formal matters including the election of a new chairperson, the meeting adjourned around 4 p.m.