My work with Sense International is to ensure that people with deafblindness in Uganda have the services they need, and that they are included in all areas of life.
Most weeks, other than a couple of days in the office to work on reports and accounts, I’m out in the field, providing support to the families of people with deafblindness. One day I might be at the early intervention centre, assisting young deafblind children. On another day, I could be at a school, helping a teacher understand how to teach a student with deafblindness and include them among the hearing and sighted children.
I also help create materials that students can use in school. Some days I work at home, making plans for families – tailored to their individual circumstances – to help teach a young person with deafblindness to take care of themselves, including day-to-day tasks such as grooming.
My work always requires a lot of thinking, creativity, innovation and close relationships with the families of young people with deafblindness, as well as our local partners that help support them.
I receive phone calls from parents who say things such as: “I have a child who cannot sleep: during the night they are awake and they sleep during the day. How can I switch from night to day and day to night?” So I’ll come up with the right strategy to do it. Or perhaps a young person is struggling to bathe themselves. I’ll think through how to adapt materials already available to the family to make it possible for their child to bathe themselves without help.
The Connecting the Dots programme has delivered vocational training, transformed attitudes to disability and strengthened the work of organisations working with people with disabilities.About the programme
A big issue in Uganda is that we still have insufficient data on deafblindness. Internationally, it took a long time for deafblindness to be recognised as a distinct disability. Deafblindness is a unique disability with unique challenges. Even now, when the government carries out a census, they don’t include deafblindness in the list of disabilities to identify with.
We collect data and compile it in the areas where we work, but we aren’t everywhere in Uganda. We are challenging the government recognise deafblindness as a disability, so we can identify and support these people. You cannot plan to support someone unless you know they exist. And because we don’t know how many deafblind people there are, the services required just aren’t there.
Sense International estimates there are 14,000 deafblind people in Uganda, but it’s just an estimate. The rate is particularly high because rubella is still very prevalent and the government does not provide the MMR (measles, mumps and rubella) vaccination here.
The European Commission has funded the economic empowerment programme since 2012, and additional funding was awarded in August 2017 by the National Lottery Community Fund. This generous support has helped to transform the lives of hundreds of young people with disabilities in Uganda.