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Supporting children with deafblindness in Uganda

Alice Nabbanja from Sense International explains how the organisation has been working with Sightsavers in Uganda supporting young people with deafblindness and complex disabilities.

Sightsavers, April 2020

Alice describes how our Connecting the Dots training and employment programme is helping  make sure no young person in Uganda is left behind.

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.

Edith stands outside with a group of students from the Connecting the Dots programme.

Nobody left behind

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

Deafblindness in Uganda

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.

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A young girl sits on the ground.
Sense International and Sightsavers support children like Hellen, who has deafblindness.
A woman sits in a chair with a cup and bucket.
The programme helps women like Norah gain some independence.
A Sightsavers worker stands with a mother and a child next to a pig pen.
As part of the programme, the families are shown how to rear pigs so they can earn a living.

Working with Sightsavers

Sightsavers works to empower people with all disabilities. Many people with visual impairment have, at some point, experienced hearing impairment as well; for some, their hearing deteriorates over time. Then the question arises – how do we better support this person now they have become deafblind?

That’s why Sense International exists – we’re here to support people with deafblindness, and so we’re extremely happy to enter this partnership with Sightsavers. We bring our expertise to ensure that services provided to people with deafblindness are comprehensive, meet their needs and make sure their rights are at the forefront of all of our work. It’s what we do and what we live for.

As part of the Connecting the Dots programme, we’ve been training Sightsavers staff on how to support people with deafblindness so that they can be included, and can ensure they get support that will make the greatest difference. One of the children we have supported is Hellen, from Masindi. We gave her family advice on how to communicate with Hellen, and helped them to rear pigs to generate income. Read Hellen’s story here.

Deafblindness comes with many unique challenges, and can appear very difficult to manage – but it doesn’t have to be.

At Sense International we understand the full scope of deafblindness, how people with deafblindness communicate, and how they can live with independence. It’s really hands-on, practical training. Together we can ensure people with deafblindness can live their lives to the full, without barriers and discrimination.

 

Author

Alice Nabbanja.Alice Nabbanja
Alice was community-based rehabilitation officer at Sense International, Uganda. She left the organisation in 2019.

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.

Sightsavers staff member Doreen speaks to a woman while her children sit on the floor.

"We’ve been training Sightsavers staff on how to support people with deafblindness so that they can be included."

Sightsavers staff member Doreen speaks to a woman while her children sit on the floor.

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