What happens when we listen, include and respect

My name is Mark Mapemba. I am a self-advocate from Malawi.

A self-advocate is a person with intellectual disabilities who is an expert on the rights and needs of people with intellectual disabilities. I am the Self-Advocacy Coordinator at Inclusion International.

I was part of a project with the International Rescue Committee (IRC) in Burkina Faso and Ethiopia. This project was about including adolescent girls with intellectual disabilities in humanitarian work. I was part of the project team, giving advice and support throughout the project. I also led training sessions for IRC staff and local partners on using the Listen Include Respect guidelines. Listen Include Respect is a set of practical guidelines that help organisations include people with intellectual disabilities in their work.

In this blog, I want to share what we learned from using these guidelines, and why it is so important for organisations to work as equal partners with disability organisations and self-advocates from the start of their projects.

Girls with intellectual disabilities in humanitarian camps in Burkina Faso and Ethiopia face different challenges to their peers. A key challenge our project wanted to address was that the humanitarian services and programmes where the girls lived were not inclusive or adapted to their needs. This included schools and training programmes. This led girls with intellectual disabilities to face exclusion and bullying from their peers, which made them feel lonely and stay indoors.

Projects work better when self-advocates lead them, not when we are only asked to join programmes or consultations. Having a self-advocate in the project design helps the project to be inclusive from the start. Myself and my self-advocate colleagues in Burkina Faso and Ethiopia made sure the project was accessible. We led key parts of the project, including the consultations with the girls. The project was planned well, and thinking about accessibility and inclusion from the beginning meant there was no extra work to “translate” information or adapt processes down the line. This saved time and money!

As the project was about hearing from girls with intellectual disabilities, it was nice to see how well the IRC staff used the Listen Include Respect guidelines and listened to t self-advocates’ advice. This made sure the girls with disabilities were able to meaningfully be part of the consultations. Some of the girls had never been asked questions or shared their ideas before. It was nice seeing them take part for the first time and be able to talk during the consultations. This shows that, with good support and a safe place, people who are often sidelined and ignored can speak out and do advocacy work. The girls did well with this.

I think using Listen Include Respect on this project has helped the IRC staff gain a much better understanding of how they can work with people with intellectual disabilities. The guidelines have helped them to know how they can work in partnership with self-advocates, how to communicate in an easy-to-understand way, and above all how to plan project activities to be flexible and work for people who are usually “left behind”.

It is time for more organisations to use Listen Include Respect guidelines in their work. We have seen organisations that have used these guidelines doing well on inclusion. Organisations that do not use these guidelines miss out on hearing the real experiences of people with intellectual disabilities. They miss out on the expertise that we, as self-advocates, bring.

My message to Bond members, development organisations and funders is this: work with disability organisations as equal partners from the start of your projects. Use the Listen Include Respect guidelines. Include self-advocate leaders. When you do this, you will see what we saw – that, with good support and accessible projects, the most excluded groups of people can be involved, and they can share their knowledge and make projects better.

This is what happens when we listen, include and respect. I hope more organisations will follow this example.

For more information on this project, please read the case study here. For more information on Listen Include Respect and how you can run inclusive projects, visit: listenincluderespect.com/projects.