Make a difference

In my blog of January 27th (KADUPEDI - The people I work with), I had written about some of the most amazing people I have met here. Biiara Gatrida was one of them. She was born with polio and both her legs are non-functional. She wears thongs on her hands to use them as her feet and drags herself all over. When I met her, at first it was painful to watch her straining at each step. At the same time, I was struck by how well she could manage herself, as if her disability did not exist. She has boundless perseverance and determination.

Despite her condition, she took courses on weaving mats and baskets. She now makes and sells these hand-made articles to support herself. When I asked her about her biggest wish, she instantly replied that she was desperately yearning to acquire a wheel chair. If she had her own vehicle, she explained, she could herself pick up the raw material for her weaving business. When others help her, she cannot always rely on them. And, she wants to be independent. She also wants to start giving lessons in weaving to others in her situation.

Reading her story on the blog, my dear friends, Margie and Phil Bott, were moved and they immediately fired off an e-mail to me offering to buy a wheel chair for Biiara Gatrida. What a heart-warming gesture! And, they didn’t even inquire about the cost. Very special people they are, Margie and Phil.

In talking to Baluku Peter at the office, he explained that because of road and traffic conditions, here, a tricycle is preferred by those who are not mobile. It has a wheel in the front. Instead of paddles, the rider uses the handles that put the chain in motion to move and steer. After a few inquiries, we connected with a local company that makes these tricycles. Its first product is shown in the picture.



To build on the gesture of Margie and Phil, I have decided to acquire more of these wheel chairs/tricycles. My target is to get a minimum of ten of these vehicles before I leave Uganda around 10 April. Since writing that blog, I have met dozens of people - children, women and men, who, because of polio, cerebral palsy, epilepsy, land mines, accidents or injuries suffered during Uganda’s bloody insurgencies, are not able to move. And, being extremely poor, no one, including family members can help them with mobility.

The challenge is overwhelming and giving these vehicles to ten people will be only like a drop in the ocean. Nevertheless, there are many small ways in which we in rich countries can help out these poorest of the poor, people with disabilities. Giving of these wheel chairs/tricycles will be one such tiny step.

If you are moved, motivated or inspired, I would welcome your participation in this project. It will cost you not more than $200. And, you will certainly make a huge difference in the life of someone less fortunate. They will forever be grateful to you.

For contributing to this effort or any questions, please send me an e-mail at: tda1@rogers.com

A Ugandan Family

Robert is a 34-year old Ugandan. I met him at an Internet Café a few weeks ago. He is a medical laboratory technician working in a Health Centre in Kasese. We meet once or twice a week, usually on Sundays.

Yesterday, he invited me to visit his home in a nearby village located in the Rwenzori mountains. Robert has a government subsidized apartment in Kasese, but he visits his home every weekend to be with his mother and siblings and more importantly, to help them “dig”, i.e. cultivate land. We started in the morning around 9. Normally, Robert travels to and from his village by a boda (motorbike taxi), but, today he had made special arrangement for a car taxi. Once we left the main highway, the road to his village was, like most other roads in Uganda, unpaved with hundreds of thousands of rocks and pot holes every few meters.

Maliba Town

We reached a town called Maliba (pronounced Maliva) around 10:15. It is located at the bottom of one of the mountain peaks in a scenic setting. At one end of the town is a half-completed structure where Robert’s family members and neighbours were waiting for us – his mother, his two brothers, two sisters, cousins and several neighbours. They exuded genuine joy and warmth. They were pleased to see me and their excitement was palpable. More than anyone else, his mother was beaming with happiness. Her name is Kabugho Rakeri. I soon learned the reason for their excitement - I was the first foreigner to visit them.


Family and neighbours in Maliba

Robert’s father died ten years ago of Asthma. Robert is the second oldest among his five brothers and two sisters; so, he introduces himself as Bwambale (second born) Robert. His older brother lives in Kampala and the rest of the siblings are still studying. Robert is the main breadwinner and the half-completed structure is a Health Centre he is building for his village. There is none at present.

Standing by this building, Robert pointed out his village, Mpumuro, located way up the hill. That’s where his mother lives and that’s where Robert and his siblings were born. His family members climbed up the steep hill on foot without much effort, but to make it easy on me, Robert called a couple of bodas. Yes, I rode on a motorbike without any safety gear on an uphill path with all kinds of hazards. Here, you have no choice or time to worry about safety.

Mpumuro Village

The village consists of scattered homes besides parcels of hilly terrain. Robert’s family owns about 5 acres. They grow coffee, cassava, banana, maize, Irish potatoes (Ugandan name for potatoes), sweet potatoes and groundnuts (peanuts). But, farming contributes only marginally to family’s income.

There are three small homes made of mud and wooden planks on their land – one serves as a common accommodation for the siblings, one consists of the kitchen with a wood-burning stove, and, one is his mother’s quarters. They also have a goat with two babies as well as half a dozen chickens. Water supply is a huge problem. They have to fetch water from a nearby river and that involves carrying pots full of water up and down the hill.


Robert (in the middle) and his brothers

As soon as we arrived, neighbours and friends and relatives started trickling in to greet and meet me. Robert kept repeating how special an occasion it was that a foreigner had visited them. They were glad to hear that on my part, I considered it an honour to have visited their family. They also giggled at my attempts to speak a few words in their language. Several half-naked kids kept staring at me from the doorway. They couldn’t contain excitement when I took their pictures. I also met an elderly man who is the guardian for Robert and his siblings. In this community, when a man dies, someone, an elderly family friend or a relative, is entrusted with the responsibility of mentoring and guiding the young ones. Robert explained that whenever any of the siblings and even their mother has an issue to be resolved, they turn to him for advice. He is like an elder in some of our Aboriginal communities in Canada.

When we settled down in their hut, Robert’s mother was keen on serving me some home-cooked food following their customary practice. Robert told me that she was anxious to have a goat slaughtered and cook it for me. But, he had advised her previously that I prefer vegetarian diet. Ugandans are so accustomed to meats, they cannot fathom a strictly vegetarian diet. She was disappointed, but, as a welcoming gesture, she gave me a shirt as a gift.

Tribal Traditions

I was not able to communicate directly with his mother and others because they don’t speak English and I don’t speak Lhukonzo, their language. So, Robert acted as interpreter to help with the conversation. I learned that Robert’s family is from the Bakonzo tribe. According to their tradition, the father looks for the bride for his son, similar to the tradition in rural India. When Robert’s father was of marrying age, Robert’s grandfather started looking for a woman for him. He reached out to a neighbouring community and found the bride for Robert’s father. I doubt if Robert is going to follow this tradition. He already has a girl friend, Mary, a lovely woman whom I have met.

I had no idea that these people also have a dowry system. But, the roles are reversed. Instead of the bride’s folks giving the groom a dowry as in India, it is the groom’s family which gives out a dowry to the bride’s family. Often, the dowry consists of goats. Goats are greatly prized and goat meat is the most popular meat.

To give children some sense of their roots, when a child is christened, his/her formal name begins with the name of the grandfather on father’s side. Robert’s formal name is Nyamongera (grandfather’s name) Robert. All his siblings’ names similarly begin with the name of their grandfather. Yet, they don’t use their formal names in everyday use. Thus, Robert is called Bwambale (second born) Robert.

Robert’s grandfather on mother’s side died a few weeks ago at the age of 115, an amazing record in this country where life expectancy is only 52 years. He had seven women (the word they use around here for wife), and an unknown number of children. Polygamy is legal in Uganda. His grandfather on father’s side had three women and seven children. However, Robert’s father had only one woman, Kabugho Rakeri, Robert’s mother.


Outside Robert’s Home

Returning from the village, no other transport was available. Our only choice was to walk down the mountain, about 3 km to the base. The narrow path was full of twists and turns and a steep incline that sometimes was almost vertical. To exacerbate the problem, I wore sandals, not walking shoes; and the light drizzle had made the path extremely slippery in places. Robert goes up and down this path every week, knows every inch of the way and had no problem. Thanks to considerable support from him, I managed, except for a slip. That climb was one of the most stressful and exhausting I have experienced.

At the base, Robert had already arranged for us to have lunch in an excellent restaurant. The beer tasted wonderful even though it was not as cold as I would have liked. And, the vegetable curry was also good. That lunch culminated an unforgettable day. The visit to Robert’s family was an awesome learning experience, the highlight of my stay in Uganda. I got some valuable glimpses in the culture, traditions and practices of rural folks in this country. I hope other ex pats in Uganda will have a similar opportunity.


Robert’s mother

Disabilities in Uganda

In the short time that I have been here, I am beginning to realize how overwhelming the issues affecting the disabled community in Uganda are. People with disabilities (PWDs) are among the poorest and rampant poverty contributes greatly to disability. It’s a vicious circle.

Using the World Health Organization’s world-wide estimate of 10% of population as a benchmark, there are 3.2 mill people with a disability in the country. This is perhaps an underestimate.

Causes of Disabilities

A number of factors have led to large-scale disabilities. Following independence from Britain in 1962, Uganda was torn apart by ethnic and tribal conflicts. Then came Idi Amin’s reign of terror from 1970 to 79 during which thousands of people were killed or severely injured. Another civil war broke out in 1982 under the banner of National Alliance for Liberation of Uganda (NALU). That uprising was squashed in 1986 by the National Resistance Movement (NRM) which has been the ruling party since. However, violent agitation occurred again between 1996 and 2002, led by the Alliance for Democratic Front (ADF).

These civil wars have left thousands of Ugandans maimed, homeless and orphans. In addition, 57 areas, many in the Kasese district, have been affected by land mines planted during the conflicts adding large numbers of people to the ranks of PWDs.

Many children are born with a disability: hydro cephalous (a big head), club feet (twisted feet), deafness, blindness, speech impediments, cerebral palsy, polio, etc. When a woman gives birth to a disabled baby, chances are that her husband/partner will leave her or react violently towards her accusing her of bringing such a baby in the family as if he may have had absolutely nothing do with the disability.

Furthermore, abduction of children has resulted in thousands of orphans. Between 1990 and 2001 alone, an estimated 20,000 children were abducted in conflict areas, and only 5,000 were returned to their communities. These children suffer from psychological problems and high-risk behaviours. Thousands of more children have been rendered orphans and vulnerable due to malnutrition, limited access to food and medical care, difficulties in eating balanced diets, and, stunted growth. The issues of these young Ugandans are of so monumental that the national government has established a special program for orphans and vulnerable children (OVC)

Polio Victims

Chronic diseases like malaria, cholera and meningitis add to the rolls of the disabled as do accidents. Ugandan diet, women’s difficult labour at child-birth, and, poor health care are other contributing factors. And, preference for large families adds to the misery.

HIV/AIDS

Overall, Uganda has fared better than some other African countries. The prevalence of HIV among Ugandans 15-49 years varies from as low as 2.3% in the northwest to a high of 8.6% in the central region where Kampala is the major centre. In the western region which includes Kasese, the incidence is 6.9%. However, in the Kasese district the prevalence is 11.5% and it has been rising. This district is on the border with DRC and there is very heavy traffic carrying goods back and forth. Drivers of these lorries are known as “geographical bachelors”, i.e. married while at home, but bachelors on the road. There are also a couple of big industries, cobalt and cement, which attract workers, mostly men, from the villages. In these circumstances, HIV keeps spreading.

There is no information on HIV among PWDs, but it is suspected that the figure will be much higher because PWDs are more susceptible to the virus. They tend to readily succumb to the human need. Most of them are isolated, poor and lonely, and extremely vulnerable. With the slightest hint of love and attention, even from complete strangers, they submit. This is particularly true of disabled women shunned by partners and family members.

Many children inherit HIV from their mothers. Numbers of HIV-positive children of mothers carrying the same virus is not known. But, a recent newspaper item suggested that although the situation has improved, it could still be as high as one in six children.

A lack of HIV/AIDS education is another factor. There are community workers who strive to raise awareness and urge people to undergo testing. But, their reach is very limited and sporadic. Adding to the difficulty is non-availability of educational material in Braille and sign language teachers.

Since HIV/AIDS’ victims are mostly in the income-earning age bracket, the impact on families is devastating. The care and medication for an HIV/AIDS patient takes a heavy financial toll and the responsibility for looking after the family is often thrust upon children who lack maturity, knowledge and skills. As well, psychologically, these children are under heavy stress as they watch their sick and suffering parents day after day until their death.

Social Attitude

Above all, social attitude towards disabilities inhibits adequate care and rehabilitation of PWDs. A disability is considered a stigma or a curse, something a disabled person deserved, something to be ashamed of. Some mothers are so traumatized by a disabled child, they hide them lest others might see them. Community members tend to avoid PWDs.

KDP delegation meeting with District Commissioner (squatted, 2nd left)

Social attitude towards disability and the disabled has led to widespread systemic bias against PWDs. They cannot attend schools most of which are inaccessible and do not have teachers to teach sign language or Braille or meet other special needs. Many hospitals are not easily accessible either and hospital beds and latrines are not suited to meet the needs of PWDs. Hospital staff members also do not have the skills to interact with PWDs. As well, there are cases of abuse of PWDs by health care workers themselves. In the work place, the chances of securing employment are virtually non-existent for PWDs. There is a national law, The Persons with Disabilities Act 2006. It provides for equal access to employment for PWDs. But, the law is only like a statement of good intentions. Its implementation and monitoring leave lots to be desired.

The consequence of these factors is that PWDs are looked upon as useless. Even many disabled individuals see themselves as good-for-nothing. And, in the long list of government priorities and limited resources, issues of PWDs seem to fall by the way side.

This is the context in which KDP and other similar organizations serving PWDs are carrying on their work. Their task is huge and the challenge is immense.


Women with disabilities at a tailoring class