“The best we can hope for with these people is to keep them alive”
I remember it like it was yesterday, the shock that someone in his position would say something like that, knowing I had to challenge it and feeling determined to change things for the better.
It was 2009 and He was the manager of a drug and alcohol service and I was a service user representative, we were at an event about redesigning services to achieve better outcomes. It was called a LEAN review and there were senior managers from drug and alcohol services, probation and mental health services alongside consultants and academics.
I spoke up “I want more than that, I expect more than that”. I went on to describe what happened when I first spoke about wanting to achieve abstinence following 11 years of opiate addiction. The reaction was “You’re doing so well on your methadone, why would you want to risk all that?”. My workers understanding of me and what I aspired to was so far out, it was clear she didn’t know much about me and how I felt about myself.
For the next 10 minutes I off-loaded all my frustrations about being constantly reminded of my deficits. Drug and alcohol services were basically telling me to accept the bare-minimum from life and be grateful to be alive. Probation told me I had poor communication skills and no motivation to change, my last pre-sentence report stated that I had “poor comprehension and possible learning difficulties”. Mental health services spent 90 minutes asking me yes and no questions before deciding there was no clinical diagnosis, I had very low self-esteem and sending me on my way. The jobcentre told me to “accept I would never work in a position of trust and responsibility again”.
If you can help decision makers, people in positions of power and responsibility, realise and understand the value of expert by experience knowledge you can help to change systems”
After 10 minutes of putting the world to rights I sat and waited for the reprisals, I expected this room full of senior managers and academics to shoot me down with 101 scientifically proven reasons I was wrong to have ‘unrealistic expectations’ and to hope for more from life. I was red in the face and ready for conflict. What happened next was the opposite of conflict, I looked round the room to see nods and to hear verbal agreements and even some applause.
At times during my time as a service user representative and as a peer mentor I felt some people were patronising me. Because of my own insecurities I doubted that I was being taken seriously, I doubted that I was making a real difference. Four years later something happened which made me realise I was making a difference. The head of community safety was speaking at a personalisation event, she had attended the Lean review in 2009, and she told the participants “It was Matt who made me realise we are not aspiring after enough for our service users. We have to tell ourselves the sky is the limit”.
If you can help decision makers, people in positions of power and responsibility, realise and understand the value of expert by experience knowledge you can help to change systems. People experiencing disadvantage have always had their own understandings of themselves, their situation and what they need to change their lives for the better. By working with decision makers we can change the system from one which sees people as problems which need diagnosing and fixing to one which values people as ‘experts of their own experience’, their feelings, fears, hopes, and aspirations.
About the author:
Matt Kidd is the founder and director of Creative Inclusion, an organisation which finds creative ways of involving people facing disadvantage in decisions which affect them. Matt was inspired to form Creative Inclusion following his involvement in the Lankelly Chase funded ‘Elephants in the room’ project, a social experiment to test the conditions in which decision makers and people with lived experience of disadvantage create solutions together.
Creative Inclusion work as a critical friend to local authorities and larger organisations to ensure the voice of those with lived experience is influencing their thinking, culture and ways of working. Creative Inclusion act as the glue that keeps decision makers, frontline workers and experts by experience together, offering training, mentoring and coaching support to everyone involved in their coproduction work.
As a member of Tameside User Forum (borough of Greater Manchester) Matt advocated for peer support within drug and alcohol treatment and criminal justice services. The Probation Trust responded and worked with individuals with lived experience of the Criminal Justice system to coproduce a mentoring service. After working as employees of the probation trust for two years Matt and a colleague co-founded CLI (Community Led Initiatives), a user-led social enterprise offering mentoring support to people with complex needs. He worked for CLI for 4 years before leaving in July 2017 to form Creative Inclusion.