Beyond ‘box ticking’: MIF introduces the Lived Experience Movement

Picture courtesy of Manchester International Festival via Twitter

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.

Unfiltered Talks: mental health out in the open

Meaningful connections in a digital age

Unfiltered Talks is a series of events founded by Amazing Minds, WeAreASSIF and 0161Marketing ‘in an attempt to Empower, Inspire and Improve direct and indirect sufferers of mental health issues‘.

The Unfiltered Talks banner declares ‘Empower, Inspire, Improve’, and the line up of panellists delivers on this message, but gave so much more.

This event has a distinctive flavour – an openness and honesty that many speaking line ups don’t often allow space for.

Beth Wilshaw from mental health startup WeAreASSIF artfully mixed direct questions from audience members with those submitted through online platform slido.com (this also allows anonymous questions).

The speakers

Each guest took a few minutes to tell their story, each speaking honestly about their lived experiences of mental distress, as well relating this to the suffering of friends and family and wider society.

Emilia Kolbjørnsen – Manchester Girl

AKA @itsAmeliaKoko, Emilia who is a marketing specialist, spoke about her difficult and disjointed childhood growing up in different countries and struggling to find her place in the world.

From her teenage years depression and anxiety followed her around as she moved from one country to another.

Working hard and playing hard took their toll and Emilia took stock of her support network with a ‘friends cleanse’. She says:

Diet is so much more than what you’re eating. It’s what you’re seeing and experiencing, including the people around you.

It was at this point she connected with women’s friendship network Manchester Girl where she now volunteers as community manager.

While Emilia urges others to watch their ‘mental hygiene’ with social media, she’s also keen to point out the abundance of opportunities our online connections can bring in terms of friendship and community.

You can hear Emilia speaking to Bilal Jogi in the latest edition of the Amazing Minds podcast.

Bilal Jogi – Amazing Minds

Bilal (@iambilaljogi) talked with welcome openness about his history of panic attacks and anxiety. He’s researched a wide range of drug-free approaches to managing his condition, including vitamin and mineral supplements which he feels have helped him a lot.

It’s taken time for Bilal to find the things that help his anxiety and he’s put much time and effort into understanding the thought processes that underpin his panic attacks.

He warns others not to use online advice to self-diagnose by searching for answers online:

People want quick answers – it’s a huge problem because people google symptoms, but we’re vulnerable. Don’t do it. Be careful what you read and listen to.

Omar Latif

Omar is about to launch WeAreASSIF a new platform which empowers people to manage their own mental wellbeing by engaging with artificial intelligence (AI) tools and innovative approaches to content delivery.

I had heard Omar speak before about the loss of a very close friend to suicide. This time expanded on the impact of this experience, readily expressing the negative effect these events had had on his mental health.

WeAreASSIF is at a very exciting point as the app prepares for launch later this year. Although social media is a vital part of product promotion, Omar worries about the effect it’s having on our minds:

It’s scary how the need for [social media] validation changes us. It can be a ‘bad garden path’ to poor mental health. These apps are keeping people hooked – delete and unfollow!

A very healthy evening

Unfiltered Talks had a very different feel to many evening speaking events. By keeping speaker introductions brief there was lots of time and space for questions and chat.

The size and intimacy of the venue were just right and comments from the audience were welcomed and responded to, the atmosphere was more friendly debate than straight content delivery from the speakers.

I certainly came away feeling uplifted and I’m very much looking forward to the next Unfiltered Talks event.

Photographs courtesy of Unfiltered Talks / Amazing Minds.