At the early stages of projects, I sometimes hear a reluctance from people to include the voices of people with lived experience in work, like it’s a distraction – the idea of coproducing with somebody who hasn’t had their training or education panics some people. But surely the purpose of education or training is to give you the knowledge that people with lived experience are living every day?
Their knowledge is so much more than a concept in a textbook or a workshop scenario, they are the real experts – the rest of us are simply playing catch-up.
“They’ll only know about their own experience” – In my experience people with lived experience are no different to other people in society and talk about their own resilience through problem solving, finding coping strategies, speaking to others, comparing their lives to people they know. What they can share with us is worth more than many of us can learn in a lifetime of work.
It’s no accident that NDTi places the importance of people’s voices at the top of our priorities in our work because we’ve seen first-hand the sustainable difference it can make to organisations and communities. My job means that I listen to this expertise on a daily basis, but my real understanding came from being a parent carer, watching my son make decisions that were far beyond any understanding I had built through training and education.
Although I recognise that medication can work for some people, I was awestruck when, at the age of 10, he sat in his paediatrician’s office being offered medication for his increasing anxiety and frustration at being different from other children of the same age - He emphatically said no! “I don’t want to feel like I’m not me, I want to feel everything so that I can learn what to do next”. I had no idea that he’d already looked online for answers and had seen that medication could make him feel “weird”. He’d talked it over with his friends and decided that it wouldn’t work for him. That was the first time that I realised he was the expert and that my role was his advocate and facilitator. As a parent faced with navigating the system to help my son live an inclusive life, I’ll admit I was more than a little relieved. Neither of us needed to solve these big decisions alone.
This feeling is often shared by the people we work with who, although once sceptical, have learnt that coproducing with people with lived experience brings amazing insights that help to overcome longstanding challenges within our work. It’s a realisation that, even armed with what could work, we don’t need to know all of the answers – the real experts already have so much of this information, we just need to include them.
Discover more about our People’s Voice commitment within the NDTi Strategic Plan 2019 – 2021 and how we believe experts by experience are at the heart of what we do to support getting things right for people.
Drew Edwards is the Marketing and Communications Manager at the National Development Team for Inclusion (NDTi)
NDTi is an organisation that promotes equal and inclusive lives for people in their communities, particularly where ageing or disability are issues
Drew Edwards's blog is a personal opinion and does not necessarily reflect the views of the NDTi.
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