When you are different society does not cater to your needs, you do not have power and more than likely you don’t have access to the freedoms that those with power take for granted.

But things are changing. Diversity initiatives have invited people from a wider range of backgrounds into the institutions that make important decisions for all of us, about things like our health, wealth and the law.

Of course this is a good thing, but it is only a very tentative step in the right direction.

For real and meaningful changes to happen which genuinely make society a fairer place for all our citizens it is not good enough merely to employ people with lived experience of disadvantage.

The value of lived experience among the leadership of the organisations that shape our society needs to be recognised, championed and believed in.

As part of the Interdependence line-up at this year’s Manchester International Festival, a panel entitled ‘How do we reclaim our humanity?’, six extraordinary people described how their life experiences had led them to head up their own organisations.

Human rights lawyer and Clore Social Fellow Baljeet Sandhu headed up the cast of ‘New Constellations’ – the bright stars who are leading a new era creating new services and opportunities for the unheard.

Baljeet founded Migrant and Refugee Children’s Legal Unit based in London and was its director from 2012 until 2019. She is one of the UK’s top experts on children’s rights in relation to asylum and immigration law. 

Paula Harriott is a mum, grandmother and part of the senior management team at the Prison Reform Trust, she is open about having faced a long custodial sentence herself and believes that more needs to be done to meet the needs of the one in ten people in the UK who have a criminal record.

Sunny Dhadley talked about his own experience of addiction to heroin and cocaine. He explains how he developed a peer-led treatment model after he found post-detox support failed to adequately support those in recovery. (More on this in his excellent TEDxWolverhampton talk).

Farzana Khan is a youth worker from Tower Hamlets, one of London’s poorest and most culturally diverse boroughs. She started working with young people when she was 14 and created inclusive arts products.

She found that institutions didn’t meet her needs or those of other people who were the brown or black, or those with LGBTQI identities, disabled people and those from a range of disadvantaged backgrounds.

Farzana set up Healing Justice London to address the need to ensure that health and wellbeing can be a focus for every person, and that the distress of loss and trauma are shared, acknowledged with individuals and communities given the chance to repair themselves.

Jane Cordell has an incredible career portfolio as a musician, educationalist and diplomat among other roles. In 2010 she was denied a position on the basis of the cost of reasonable adjustments in relation to her hearing loss.

She believes the world is missing out on the talents, skills and experiences of many people because of kind of treatment that she has faced in relation to her disability. (There’s lots more about Jane on her website gettingequal.com).

Peter Atherton grew up in the care system and became involved in crime during adolescence resulting in a custodial sentence.

With little to aspire to, his impulsive behaviour led to drug addiction and poor mental health and his chances of finding paid work faded.

In his thirties, he realised that he could use his experiences to help others. He volunteered before working in the public sector. However, he started to feel that his presence there was token and was frustrated.

Wanting to do more than ‘tick a box’, Peter set up Community Led Initiatives with another former addict. The peer-led organisation helps people to move on from difficult and traumatic experiences such as addiction, time in prison or homelessness.

It’s time for Lived Experience to make a difference

While ‘service users’, ‘clients’, ‘claimants’ and other outsiders are starting to get their voices heard in the development of state provision, having a place at the table is not enough.

So let’s not tick boxes, let’s turn the tables themselves.

There’s enough room for us all to bring our lived experience, share it and help each other to heal from the trauma, loss and alienation we have faced and build services that meaningfully involve those they most impact.