Fred explains the staggering impact of disability stigma and discrimination in Uganda - and how his work is making a change.

Young people are discriminated against right from their own homes in Uganda. Even as babies, they are denied access to early medical intervention and neglect from families is more prevalent due to poverty levels. But we find that a good percentage have been ignored by their families just because of being disabled.  

Discrimination at every level 

In most cases, disability discrimination is accelerated by community beliefs. People in Uganda see disabled people as a curse; they think something must have gone wrong in the family to produce a child with a disability. This stigma runs through the whole community. Because of these continuous negative beliefs, there is little investment put into disabled children. And then disabled people are not seen as being useful by their community, and not useful for the future.  

We have very few role models for disabled people in Uganda, especially in the rural areas. People are only used to seeing disabled people on the streets begging, or they are invisible because they stay at home and are not actively participating in their community.  

An impact on education 

This discrimination ultimately means that many disabled children will never be able to attend school, ever in their life. 91% of disabled children don’t even go to primary school in Uganda. An independent future is denied. They won’t be able to access employment when they grow up. It even limits creativity in terms of developing their own self-employment opportunities. Early education and socialising with other people is really important for developing interpersonal skills, initiative and ideas. 

For those who are lucky and get to school, they often join when they are older than the peers in their class. It affects their confidence because they look older than the other kids. Sometimes they are bullied because of their age. They don’t fit in with the others in their class. So there is continuous bullying which affects confidence and therefore abilities. 

If the teacher does not know how to include disabled children in the classroom, because they don’t understand how to adjust for different learning or support needs, school retention is affected. A disabled child may enrol, but because they can’t participate and their needs are not met in the classroom, they do not stay and finish their education. 

The best investment in a child is education. If that is missed, or it is only partially done, it will negatively affect the whole future of that individual.  

Being the change we want to see 

So what Motivation has done for a number of years – and in Uganda since 2008 – is to ensure that we educate parents, carers and community members to understand what disability is and what are the causes of a disability.  

We train parents and carers to have skills and knowledge on how to best support their children in the home, so they know what to do outside of a hospital setting. For example, we advise on the proper posture, the right wheelchair, feeding and communication skills, as needed. We want to address that at the family and community level. Our main effort has been to improve the social support of a child in the immediate family. This has done a great deal of good in ironing out the negative cultural beliefs around disability amongst families.  

Creating Motivation All-Stars 

In Summer 2020 we will launch a new programme - the Motivation All-Stars - to support over 200 disabled children in Central and Northern Uganda. We will run sports days that are open to the community. We will invite community leaders and policy makers and they will see the abilities of the children who have been participating in the sports clubs.  

If these community leaders and government officials are only aware of disabled children who are left lying down in their community without mobility, it becomes difficult for them to see the potential to contribute to society and to achieve. By seeing them participate in sport, they will see what they can do. They can appreciate abilities, not just see the disabilities. 

When parents and community members see what a child can do in a wheelchair, what they can do with a ball – that’s the beginning of them seeing potential, too. If they are left in the home, parents have the belief that children will not be useful, then everybody will only see this. Sport can be the starting point for a community seeing what disabled children can do.  

A few years ago, we ran our first sports programme in Northern Uganda. We worked with children and young people with different disabilities and they participated in different adaptive sports, including wheelchair basketball and sitting volleyball.  

Our intention was to promote social interaction. It worked well. Most schools were already inclusive in that disabled children attended classes, but they weren’t aware of any games that could be played by disabled and non-disabled children. So the project was an eye-opener for teachers and children.  

In the beginning of the programme, access to school wasn’t a core objective but we noticed the project did increase enrolment. The disabled children were inspired by the stories of other children in their sports groups who were going to school. After the games, they would interact, discuss school, get to know benefits of education and make friends. In some cases, these friendships brought support for disabled children from their peers. 

Confidence through sport 

Sports is about play – and children enjoy playing. So they play together without getting worried by the stigma around disability. In the course of enjoying play together, they start to understand the abilities of their counterparts and appreciate that disabled children are like any other person. The discrimination disappears. They discover that disabled people can be better at sports than non-disabled people. 

Sports is also a tool that can help disabled people open up with their peers. The majority of disabled people here in Uganda have low confidence. Once they start playing sports, it’s the beginning of rehabilitating that side of things and building self-esteem. It’s also important for children in terms of making new friends and learning from each other, plus it’s the foundation for building support between peers. 

Beyond the playing field  

In Uganda, children often have to travel long distances to get to school. So if you don’t have a friend who can help you push your wheelchair across rough terrain, or, if you use crutches, to help carry your school books, it is difficult to manage 6 or 7 years at primary school. It’s a long time to need assistance. And families in rural areas can’t afford to take their children to school – it would mean being away from employment for too much of the day. When you live in poverty, this can be devastating to the household. 

That’s why building these friendships through sport and play is so important. It’s crucial for children – disabled and non-disabled – to help each other in these environments. 

So in our new programme, we will be very intentional about using sports - but we'll also provide teacher training to increase enrolment and retention at school. 

Inclusion at every level 

We have been creating awareness in schools by providing basic training to teachers on how to be inclusive in the classroom. So they will have some understanding of the support needs and learning needs of any disabled children in their school. With this training they can provide equal opportunities for non-disabled and disabled children.  

In this programme we’ll also train mentors for disabled children. We’ll teach them about disability rights and inclusion, so they’re better at supporting children who are being bullied or facing discrimination from their communities.   

When you support this programme, you are putting a huge smile on the face of a disabled child. You’re helping us to create a great turning point in the lives of disabled children in my country. This is a noble cause. 

Disabled people have been left behind in Uganda and disability is still a low priority for donors when compared to other needs like malaria. So I want to call on all well-wishers to continue supporting us. And I want to thank those who have been supporting us over the past two decades. The struggle continues, but we are making a difference. 

It’s a collective effort to improve the lives of disabled people. If we’re all inclusive in what we do, in what we say, in how we plan, then we will make the future accessible for everybody.  

This interview first appeared in the January/February 2020 issue of Enable Magazine.

The Motivation All-Stars programme will be funded with UK Aid from the UK government.

Photos © Matt Grayson