Blog from Gary Bourlet, Membership and Engagement Lead at Learning Disability England

On the 13th March, I went to the Challenging Behaviour Foundation’s launch of the ‘What Matters to Me’ project at the House of Commons.

It was great to be part of this event, hear about the project findings and meet lots of people I did and didn’t know already.

This project is so important – the voice of people who don’t use speaking to communicate is not being heard and they are not involved in policy decisions that affect their lives.

Speech is not the only way to communicate, people can express their emotions and feelings through artwork, drama, motion and with different communication tools.

I know from personal experience that these are ways that many self-advocates can build confidence and assertiveness.

This project explores those different methods and looks at how we can think outside the box when we work with people to find out their views.

The experiences and preferences of people with profound and multiple learning disabilites needs to be heard if they are to have the right support, their needs met and live their Good Lives.

This is called working in a person-centred way – people are at the heart of decisions about their own care and support.

Hearing from people with lived experience is also key to making sure policy, resources and funding is inclusive and considers everyone.

I think we need to do better at embracing people who don’t use words to communicate in the self-advocacy community too – we can all take lessons from the What Matters To Me project.

Self-advocacy and having an effective voice should include everyone, no matter how they communicate, how they look or how they love.

You can find out more about what they found through the What Matters to Me Project here.