"The Global Disability Summit is about making sure nobody is left behind on the development agenda."

Every July, Motivation staff from all over the world gather at our UK office to plan for the coming year. Uganda project manager, Fred, is not only here to meet with the team but is also attending the Global Disability Summit, co-hosted by the UK Government this week.

How was your journey Fred?

It was good – it wasn’t too long. It took eight hours to get from Nairobi to Amsterdam, then just 45 minutes to Bristol. This is my first time in the UK!

Are you excited about the Global Disability Summit?

Yes! It is a great opportunity to bring governments and funders together to improve the rights of disabled people around the world.

I met with staff from the UK Department for International Development (DFID) in Uganda who explained it’s all about supporting people with disabilities in the best way. Not single-handedly but with governments and funders, ensuring that they incorporate disability issues. It’s about making sure nobody is left behind on the development agenda.

Yes, it’s about committing to change. What would you like to see change in Uganda?

We have a lot of policies and legislation but the gap is in translating these into practical realities that disabled people can benefit from. Hopefully decision makers who can influence budgeting for people with disabilities will come to the summit so that healthcare and education become more accessible.

Fred with one of the wheelchair users we support in Uganda.

So accessing healthcare and education is a major issue?

Yes. But the root of all challenges is the negative attitude. It affects everything.

HIV and malaria are prioritised when it comes to healthcare budgets because they are seen as deadly - but people don’t think disabilities are important. Classrooms are still built without accessibility for wheelchairs – another big thing that still needs to be changed.

Discrimination is a huge issue. Disabled people rely on services that are run by charities like Motivation. The government should be taking this on.

This year’s Global Disability Summit has four key themes, one of which is assistive technology like wheelchairs. We are thrilled; our wealth of experience and knowledge in this area gives us a fantastic platform to reinforce our message about providing the right wheelchair in the right way.

Fred – as a wheelchair user yourself, are you pleased to see such an emphasis on this?

Yes. I would love to see assistive devices evolving further and designs that genuinely meet the needs of users.

In the developing world, we’ve had ten years of very low investment in this area. People still produce very old products. There’s little that has been done to study the needs of individuals, and how technology can change assistive devices and change lives. So to me, it’s a really good thing to be discussed – I will be very happy to start seeing results.

Can you tell us a little about your disability?

I had my injury when I was thirteen. My parents had separated and I was living with my father. I spent a year in hospital then went straight to a special school, so there wasn’t much time to spend with family.

Living out in the village, it was difficult for my father to visit me at school so I saw him once in two years. I don’t think he knew what to do. He didn’t know how to educate me around bladder and bowel management or how to prevent pressure sores. He didn’t know what an appropriate or inappropriate wheelchair was. 

It was the lack of education about disability that failed me and my family. Maybe I would walk again, maybe I wouldn’t. This might happen or might not… Some people are discharged from hospital not knowing their condition. That was the biggest challenge for me.

At 26 years old, I attended a Motivation peer training session. That was a pivotal point in my life. I spent a lot of time not knowing who I was but peer training changed that. It is so very important.

Peer training sessions are led by wheelchair users who can share their experience with other disabled people. For many who attend, it is the first time they will understand their condition and their rights, and have a safe space to talk about issues like sex and relationships. For some, it is the first time they have met another wheelchair user.

Fred with his wife and two of his children. Fred is the father of 11 children in total, after welcoming his brothers' children into his home.

Is peer training the part of Motivation’s work that you think has the biggest impact?

We do peer training very well; I know from my own experience. When you’re face to face with role models who have made it through, and they tell you that life doesn’t end with spinal cord injuries… That was one of the key things that made a difference to me. Also, our parent carer training helps so many parents out there who simply don’t know what to do. It helps parents understand disability and move forward with their lives.

Our wheelchair provision also has a huge impact. People are appreciating that appropriate wheelchairs are not just chairs – they are saving people’s lives. I had to do two classes in five years because I kept getting pressure sores. It was because I had an inappropriate chair. Now, with this Motivation chair, I do not get sores, I can access anywhere, I can do my activities.

I have noticed we are changing attitudes, breaking down the barrier of myths. We are creating more support for people with disabilities.

What else would you like to see Motivation doing in Uganda?

I would like to see Motivation expand in Uganda. There has been an outcry from local hospitals who have told us that the need is there. We want to serve the disadvantage and use the learning from our existing programmes to improve our work.

Finally, supporters in the UK have been very generous supporting our work in Uganda. Is there anything you’d like to say to them?

I really appreciate your support. We are putting it to good use and changing lives.

But there is still a huge need – we are a drop in the ocean. With more support, we will have the strength to reach more people.

Thank you for talking to us today, Fred. We look forward to hearing more from you after the Global Disability Summit.

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Photos © Matt Grayson