What is the project?

The Listen Include Respect UK project aims to train a new group of self-advocates with Down syndrome and intellectual disabilities, to become consultants on inclusive organisations.

The team members will support government organisations to better include people with intellectual disabilities in their work.

Why is it important?

People with intellectual disabilities face barriers in taking part in policymaking. They can't easily attend meetings or share their thoughts, which means their needs often get ignored.

What are the goals of the project?

The Down’s Syndrome Association (DSA - England, Wales, and Northern Ireland) wants to create a new team, including people with Down's syndrome, to make policymaking more inclusive and accessible. This way, their voices will be heard, and decisions will better reflect their needs.

Joe and Catherine are the first new members of this team.

How will it work?

The project has a three-year plan. In the first year, the DSA will hire two Inclusion Advisors with Down syndrome (Joe and Catherine). The team will get training from Down Syndrome International (DSi) to do their work.

The team will reach out to government departments to raise awareness and provide training to officials on including people with intellectual disabilities in policy making. They'll also support making government consultations accessible.

Why is the DSA right for this?

The DSA already works closely with people with Down syndrome through their "Our Voice" team, involving them in different projects. They have the expertise and partnerships around the UK to lead this project.

What is the impact?

This project will empower people with intellectual disabilities to have a say in decisions that affect their lives. By involving them in policy making, the UK government can create better, more inclusive policies that will positively impact education, healthcare, employment, and more.

Steps to get there:

  • Getting to know each other
  • Understanding the project
  • DSi team training DSA team on the guidelines
  • DSA team develops their own tools and training to deliver
  • Build partnerships with government organisations and deliver training
  • Train new group of self-advocates

Who is on the team?

Hi, I’m Catherine and I live in Norfolk, UK.

Before I found Our Voice I often watched the news, Question Time, and Prime Minister’s Questions about what is going on in politics. I have strong opinions on making the world a better place to be for people who have Down's syndrome. During lockdown, I was looking for something that I wanted to do and all I found was Our Voice, so I started working with them in 2020. This is something that I want to do because this is my voice to change the world.

I like being social and being with my friends. My passion is dancing; I like contemporary, ballet, musical theatre, and tap dance. I do a lot of different dance styles. I have some performances coming up, for example at my local theatre. Because I’m a dancer, I love watching Strictly Come Dancing.

Before I came to the DSA I volunteered in various places. An Oxfam shop, a café in a conference centre, and Notcutt’s Garden Centre. Most recently, I have been helping at Able2B, an inclusive gym. I clean the equipment and mirrors and help support the clients, who all have disabilities. It’s amazing because it’s inclusive of all different abilities, like cerebral palsy, autistic people, and learning disabilities. There are people of all ages, from children to older people. They work with schools as well.

When it comes to my new role, I didn’t see this opportunity coming and I felt amazed. After I got used to the idea I felt good about it because I can make a change and stand up for all people who have Down’s syndrome.

Hi, I’m Joe and I live in Yorkshire.

I have a fierce love of performing and the creative arts – the whole spectrum including movies, musicals and music itself. I love physical theatre dance!

At college, I became a student representative to campaign for inclusive education and help everyone have a better time. Since then I’ve taken on other leadership roles because I’m really compassionate about making a positive difference for all who need it. These gave me experience of work meetings.

When I was younger I came to learn quite a bit about what it means to represent your own community in different ways, from women’s empowerment to nature and wildlife, and people of different personalities and walks of life. My favourite wildlife lives in the ocean, especially killer whales, or orcas. They have been misrepresented because of their name, they can actually be really friendly. I have been inspired by movies such as Free Willy and The Little Mermaid, which have caused me to want to focus on conservation. I have adopted a whale who lives in OrcaLab in the Johnstone Strait in Vancouver, Canada.

I joined Our Voice with the DSA in 2020. I love having an open mind and I’m excited to use this to make a positive difference in my new role as an Inclusion Advisor.

Hi, I'm Tia Nelis.

I work for several organisations that work alongside people with disabilities:

One of them is TASH. They work on disability inclusion around the world.

For the past year I have worked with Inclusion International on the Listen Include Respect Guidelines. Now I will be working with Down Syndrome International as a trainer and consultant, helping Joe and Catherine from The Down's Syndrome Association to understand Listen Include Respect.

Before this, I had a job as a Self-Advocacy Specialist. It was at a place called the Rehabilitation Research and Training Center at the University of Illinois in Chicago. I used to lead groups like Self Advocates Becoming Empowered (SABE) and People First of Illinois. I also helped the Illinois Planning Council on Developmental Disabilities. I even won some awards like the Burton Blatt Award and the Commissioner's Award.

Because I know what it's like to live with disabilities, I want to help others feel strong and speak up for themselves. I teach, give advice, and work to make better systems for people with disabilities. And I recently finished a program about Disabilities at Syracuse University.

When I'm not doing all this, I live in Elmhurst, Illinois.

What is Listen Include Respect?

The Listen Include Respect guidelines explain how organisations should include people with intellectual disabilities in different parts of their work.

The guidelines are important because right now, people with intellectual disabilities are not included in the work of organisations.

These guidelines can help organisations at different stages in their inclusion journey to take steps towards making their work more inclusive so that everyone can take part and share their valuable ideas.

Visit the Listen Include Respect website to learn more: