Mwesigwa has dedicated her life to children with cerebral palsy

Saturday September 21 2019

Joy Mwesigwa has dedicated her life to improve

Joy Mwesigwa has dedicated her life to improve the lives of children with cerebral palsy. PHOTO BY George Katongole 

By George Katongole

“Ours is a story of hope. It is that kind of school that takes the sting out of what society calls disabled,” reads a statement on the official website of Kampala School For The Physically Handicapped on Balintuma Road in Mengo, Kampala. This is the place that has defined the life of the 60-year-old Joy Mwesigwa.

Unplanned start
Raised in the neighbourhood of the school that will mark its golden jubilee next month, Mwesigwa did not know she would later hone her life around children many find inconveniencing.
“As a young girl, I never thought of working in a school setting. I was always fascinated by fashion design and inspiring the youth,”she says.
Born in Mengo, Mwesigwa went to Gayaza Primary School and Gayaza High School for her primary and secondary education. She later joined Makerere University, where she graduated with a degree in Social Administration and Psychology in 1981. The purpose, according to Mwesigwa, was to showcase her leadership skills among the youth, mould and inspire them to be responsible citizens.
Mwesigwa believes it is a mission, she has tried to accomplish on the face value but inadvertently. “It is a whole learning experience. Watching physically challenged children making progress, whether they are learning how to walk or write, or listening to testimonies from parents, is a rewarding feeling,” she says.
Mwesigwa’s journey began with a stint at Ministry of Finance, where she worked in the tax assessment department.
“I was always trying to make ends meet. I decided to venture into fashion where I could make sales. At university, it used to supplement my pocket money,” she says.
She later joined Namirembe Diocese in 1984, as a youth manager of sports outreach ministries.
“The skills I acquired from university came in handy. I created teams that always brought out the best of everyone. I loved to minister,” she recalls.
All this time she was still doing her tailoring hustle from home because of what she calls ‘humble remuneration.’
It was during this time that she went for further studies at Daystar University in Kenya. In 1986. She joined the late Abbey Kafumbe Mukasa’s Allied Industry as the production manager before she got married.

Humble beginnings
One of the founders contacted her at the time they were looking to revamp the school. “It was not easy. It felt like a huge load I was given to carry. I prayed to God to give me a sense of direction because I had never thought of working in a school setting,” she says.
“I felt I was not the most qualified. I actually met opposition from my mother. I was just 29 and I always thought I could fall back on tailoring if conditions got worse,” Mwesigwa reminisces.
She recalls the humble beginnings: “I was told there was not enough money to pay me. They proposed to enroll me on the Ministry of Education payroll, an idea I declined. I asked to be supported to build the institution.” They finally settled to pay her Shs30,000 per month but she got her first salary after three months.
Mwesigwa sought permission to sell unused school items from which she raised Shs60,000. Being the focused woman that she was, she used the money to purchase Jinja cloth material to start the vocational department. The first enrolment of the department registered only two pupils. With more funding from the Rotary Club of Mengo, she acquired a cutting table, which the school still has, many years after.
Nearly 50 years ago, the family of the late Henry Barlow, parents of two handicapped children, mobilised other parents and some professionals to form what was called Uganda Spastics Society.
The association’s objective was to provide education, rehabilitation and vocational opportunities to children with cerebral palsy and other learning challenges.
Along the way, the vision was almost shattered because the school was mismanaged yet the challenge still abound.

Ahmed Ngabo, an occupational therapist helps a
Ahmed Ngabo, an occupational therapist helps a child walk on crutches. PHOTO BY GEORGE KATONGOLE

Turning point
As an administrator, she embarked on seeking partnerships in key areas as the head teacher took on the academic matters. First, she opened the rehabilitation department after the Indian Association agreed to pay the salary of the physiotherapist in one of the fundraising events.
Today, the school offers rehabilitation through occupational, hydrotherapy, physiotherapy, grooming and personal hygiene, as well as vocational skills through tailoring, leather-works, knitting, ceramics and crafts.
Mwesigwa says the success stories of her pupils are worth celebrating.
“Miriam Kiconco Kulyata, one of the girls who could hardly move, today has a good job. She always wanted to be a doctor and after Alex Kalyesubula offered corrective surgery, she was able to use crutches and later intensive physiotherapy corrected her movement,” she says.
Kiconco is a member of the school management board.“She is also a lawyer and has a family and I optimistic that she doing well,” Mwesigwa adds.
“If I died today, I would say I lived a fulfilling life. I believe what matters in life are the lives one has touched along their way. God has given me the grace to make a positive impact in society.”

Impact beyond work
This environment has changed her as a person. “I no longer complain about anything in life. Many people go through situations I can only imagine. I have come to realise that if we love such people, we bring out the best in them. Even the street children are looking for survival. If they are taken to a different environment, there is a potential of their lives turning around.”
Mwesigwa says she cannot work anywhere else except in this home where physically challenged children call her aunt or mummy. “These children are special. I enjoy encouraging them. Many people are obsessed with accumulating wealth, yet such children need a few things to walk away with a smile.”
Sadly, children with special needs are discriminated against even by their own parents. At the school, not more than 10 children are day scholars. The rest are in the boarding section. “Some parents actually feel relieved when their children are away,” she says.
At least 80 per cent of the children at the school have cerebral palsy, with the rest having other mental challenges or physical disabilities.

About cerebral palsy
More than 17 million people live with cerebral palsy worldwide. In Uganda, an estimated 2.9 in every 1,000 infants are diagnosed with cerebral palsy, making it one of the most common physical disabilities.
The condition is a life-long disorder that affects one’s ability to conduct voluntary movement and coordination because of injury or poor development of the brain. These problems can occur during pregnancy or child birth. “You cannot address the educational challenges of such children without offering rehabilitation and vocational skills,” she said.

Big dreams
Her goal is to build a model home for the physically challenged children. Mwesigwa also says while many people need this kind of education, they all cannot be accommodated.
Sitting on five acres of land, the school offers education, rehabilitation and vocational skills training to children with various forms of disabilities. With a population of 186 pupils and 42 teaching staff, the school brings hope where others see despair.
When she quits her current role, Mwesigwa wants to champion parent support groups. “We urgently need parent support organisations because many children are walking a lonely journey.” One of the challenges she is the attitude of parents who expect their children to excel cademically.
Mwesigwa roots for inclusive education even when it is riddled with challenges.“The mainstream environment encourages academic competition. Someone using crutches needs different adaptations. The policy makers did not promote construction of basic infrastructure such as toilets. This limits the progress of children.Physically challenged people are looked at in the perspective of what they cannot do,” she adds.

Not for everyone
Parents who seek admission in this school are required to fill an assessment form, generated by the educational team. The medical form is then verified by a specialist.
Some are referred to Ntinda School for the deaf, Kireka Home and Pearls of Africa Special Needs Centre - Guluddene, among others. Naguru Hill Preparatory is the only inclusive school in Uganda.