Uganda: I want to study and write a book – Herbert, age 9

Interviewed by Flavia Lanyero, WV Uganda

Herbert can hardly talk. It takes him about 15 seconds to utter one word. Most of the time, he nods his head in agreement or shakes his head in disagreement as a way of talking back.

In addition to his inability to speak, Herbert cannot walk or use his right hand.

In addition to his inability to speak, Herbert cannot walk or use his right hand. One leg is paralysed and one hand folded, leaving him with only an arm and a leg for all his movement and work. Herbert hops from one place to another with one leg, and uses his left hand to eat, bathe or for any other daily activities.

Herbert’s grandmother, Hadijah Nabuuma, says that his paralysis became apparent at about 7 months when they realised that he could not sit upright or hold items in his hands. She says that he suffered from severe malaria immediately after birth, which they suspect caused his disability.

Ms Hadijah takes care of seven orphans, including Herbert. Hebert’s parents died before he was barely 5 years old, leaving him in the care of the grandmother. There is no one to give Ms Hadijah any support, and she lives off a small garden in her backyard. She also works in people’s gardens for money and occasionally receives gifts from well- wishers and organisations like World Vision. This whole family of eight shares one small house which they use mostly for sleeping.

Because of their dire situation, Herbert has never received any professional treatment and has never been to school. His siblings go to a nearby government-facilitated school but, because he needs special care, Ms Hadijah says she does not have the means to take him to either the hospital or the school.

‘Going to school would mean he has to have a wheelchair or else I have to carry him on my back.'

‘Going to school would mean he has to have a wheelchair or else I have to carry him on my back. Since he does not have a wheelchair and because I have to spend the day looking for money to feed them, I cannot ferry him to school and back every day,’ Ms Hadijah says. ‘Even going to hospital requires money. We were advised to go to Mulago hospital (Uganda’s National Referral Hospital) but I do not have money to transport us.’

Herbert, on the other hand, is more than eager to go to school. In his short conversations, he says he would very much love to wake up and go to school with his siblings. He says he would like to study and to write a book.

But, unfortunately for him, he has no access to school and is likely to remain in this state if nothing is done about his situation. Currently, World Vision in Mpigi district has provided learning materials for children with disabilities in most schools. This includes training special needs teachers and deploying them in schools, providing materials like braille machines and constructing rails, among others things.

But the challenge of getting these children from their homes to the school remains, something that requires both availability of transport and a parent’s willingness to take the child to school. For now, Herbert still needs medical care and still dreams of one day going to school. His grandmother’s wish is to have a wheelchair for him, a nearby water point, and medical bills be subsidised at the nearest health centre.

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