When everyone gave up on Ayoo

Agnes Ayoo up her sewing machine before work. PHOTO | EDGAR R. BATTE

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Triumphant. What started as a paralysis left Agnes Ayoo with cerebral palsy but she has not lived in self-pity. Ayoo is busy with her tailoring business in Gulu Town, writes Edgar R. Batte.

Before Agnes Ayoo got cerebral palsy condition. She was an able-bodied person. She could play netball and attract applause from spectators. Before she sat for Ordinary Level (O’ Level) examination, her right hand and all the way down to her leg started getting paralysed. 

Her parents sought medical attention to check what the matter was, with hope of a cure but the efforts did not yield to anticipated success. Ayoo was stopped from going to school for two years. 

Her parents expressed hesitancy at supporting her in school because, with her condition, there seemed no hope for her to realise much as an educated woman in the working world. 

She was heartbroken, and more deeply when her friends gave up on her. “I saw some of my friends, some of whom I would beat in class, continuing to study. I begged my parents to let me go back to school, but they wouldn’t initially let me. I insisted until they reluctantly let me return to school.”

 Next, the head teacher told her that her mind couldn’t cope with grasping academic learning. When she insisted, she was put on trials and told to return to Senior Three (S.3) to find out whether she could perform to expectation. 

“I surprised them. I got first grade,” she gleefully says. Hope and encouragement came from a friend who occasionally visited and talked to her. The two would also pray together.

Every night when Ayoo was alone, the words of encouragement replayed in her mind and boosted her self-esteem at a time when the people she loved and endeared to, seemed not to find value in security her future. 

Cerebral palsy (CP) is a group of disorders that affect a person’s ability to move and maintain balance and posture. Public Health Specialist, Dr Denis Buwembo, explains that it is caused by irreversible injury to the brain, before, during and shortly after birth. 

He adds, “Up to 80 percent of the cases of CP are caused before birth by largely unknown causes (abnormal brain development/gene mutations, maternal infections such as German measles, Chicken Pox, Syphilis, Zika virus, other health issues such as thyroid disease).”

For Ayoo, the condition manifested later in her life. It began with the right-hand side of her body get paralysed. Through it all, she persisted. She attained two principle passes at Ordinary Level (O’ Level). 

The school did not guide students on how to take advantage of the ‘affirmative action’ which, according to the constitution of the Republic of Uganda, the state shall take affirmative action in favour of groups marginalised based on gender, age, disability, or any other reason created by history, tradition or custom, for the purpose of redressing imbalances which exist against them.

“So, the school fees for going to A’ Level was not there. I stopped and stayed at home. I asked my parents to support me join an institution. My father refused and said that I was to waste the money. At some point, I was told that I was already weak and would not do anything so my brothers and sisters would take care of me. I would stay inside (the house) because they didn’t want me to move out. They told my mother that I brought shame because I am a disabled person,” Ayoo narrates.

Sometimes, the stigma at home suppressed her confidence. Radio gave her company, and it was there that she heard an announcement calling for those interested in skills development. 

Ayoo narrates, “I was happy to apply because I know that God has kept me alive for a reason. I did not shortlist. I applied again but my parents told me to stay home and let my brothers and sisters continue in school and provide for me. I got worried and would not socialise with people. I lost hope and became bitter with myself. One day, I joined a group and an organisation provided us with a sewing machine. The group trusted me to become the secretary and later the chairperson. We knitted sweaters and my parents and other community members were surprised at what we could do, as disabled people. I would buy sugar for my parents. I had become somebody.”

Her efforts, and that of the group, is paying off through selling tailored uniform sweaters and children’s clothes of different fashion designs and sizes. 

Last year, she applied for a financial boost from Kuonyesha Art Fund which gave her a grant with which she rented a kiosk, bought a sewing machine, materials to bolster her business unit situated in Gulu town. 

Ayoo is joyful about her self-actualisation despite the stigma that also negated her to self-piety. Her message and advice to her parents and people who stigmatise people with disabilities, is preventing a child with disability from going to school is an abuse of right and the law could take effect and they are arrested.

“That child you see as useless could turn into someone if they are helped to realise what they can do well which can change their lives, and that of their parents. Give them a chance. I can do so many things that abled people can do. My life has changed. I used to get headaches because of stress. I felt pain and the world would also see me as a headache and say negative things to me on top of segregation,” she adds. 

American country singer, Jimmy Dean shares a positive message of hope for the differently abled persons. He says, “I can’t change the direction of the wind, but I can adjust my sails to always reach my destination.”

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