Deafblind people and their families are often among the poorest and most excluded members of society in Uganda. Without support, deafblind children often lead harsh, isolated lives. Many will die young.
My role is to train providers of services to deafblind people, including teachers, audiologists, ophthalmologists, physiotherapists, community volunteers and government officials. Training is also given to deafblind people and their families.
I’ll wake up early in the morning and start the day with a heavy breakfast of corn flour porridge served with plantain or chapatti. The team and I may work as far as 130km away from the Ugandan capital, Kampala, so we often pack water and a snack for the day ahead as it is usually hard to find decent food in the villages.
Work normally begins from the regional deafblind centre, a school for the deaf with a unit for deafblind children, where I support the teachers and monitor school programmes. I’ll then travel to community schools where a mainstream teacher will take me to the home of a deafblind or multisensory-impaired child. In the home, I observe the teacher’s interaction with the family and the child, I’ll check that assistive devices are used appropriately and that the child is healthy. The home visit often lasts close to four hours. I usually visit around three children a day.
We strive to identify deafblind children as early as possible so they can receive vital assessments and support from medical and education professionals. I often feel saddened and distressed whenever I find a deafblind child malnourished, naked or dressed in rags due to intentional abuse or extreme poverty. I appreciate that we can never solve all a family’s problems, however additional funding is needed to provide further expertise and training to local organisations and persuade the government to provide support.
What motivates me most is seeing the slightest progress in a deafblind child. This might be learning how to smile, chew food, or identify a person through smell, to tasks such as meaningful communication, independent movement or acquiring independence in daily living skills.
One of our biggest challenges is that the Ugandan government has not yet adopted the rubella vaccination as part of national immunisation plans. Rubella can cause children to be born deaf and blind if their mothers catch the disease during pregnancy. Sense International is campaigning for the government of Uganda to immunise against rubella; I hope to see this commitment made in my working lifetime.
I wish I had had training on establishing the first contact with a deafblind person when I started my job. During my first contact with a deafblind person, a 10-year-old totally deafblind boy, my hands were scratched and shredded. He did this in self-defence because I had not introduced myself to him. I felt afraid but I was determined to win over his heart, which I did.
One of my proudest moments has been enrolling at the University of Birmingham for my diploma in deafblindness, this was a great landmark towards professionalisation of deafblindness work in Uganda. In five years’ time, I’ll be a trainer in deafblindness, both nationally and internationally. I envisage recording various sessions of my trainings in English and local languages to reach out to many people.
Following a long day, I usually arrive back at my accommodation exhausted at around 7pm. Often I’m asleep even before I have dinner and if I manage to stay awake I’ll call my family to chat through my day.
If there was an extra hour in the day, I’d search all corners of Uganda to dig out the fathers of deafblind children who deserted home after realising that their child has a disability. A high proportion of men fail to fulfil their responsibilities as parents. Roughly 80% of deafblind children live either with single mothers or grandmothers.
Before joining Sense International, I worked as a rehabilitation officer for Blind But Able, an institution providing rehabilitation for visually impaired adults. My responsibilities included training visually impaired adults to read and write braille and equipping them with the practical skills to participate in their communities.
While I was at Blind But Able, the organisation was selected to partner with Sense International to pilot a community-based rehabilitation project to provide hands-on services to deafblind children in Kampala district. I led the project, setting up structures of community volunteers working closely with families and a multi-disciplinary assessment team to improve the lives of deafblind children. After six months of the pilot project, Sense International recruited me to replicate the project in other parts of the country.
Sense International was the only organisation that was able to provide the expertise I needed to interact with deafblind people. Before this I only had skills to support people with visual impairment. I believe I was destined for this nature of work.
For further information about the work of Sense International visit senseinternational.org.uk
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