Lived Experience: soundbite or values shift?

“an overhaul of lived experience value needs to take place”. Ashley Batz on Unsplash

“an overhaul of lived experience value needs to take place”. Ashley Batz on Unsplash

Gerry Hamill from UK NGO First Time Inside helps new prisoners prepare for incarceration through ‘prehabilitation’. In this blog, Gerry reflects on the uses and abuses of people with ‘lived experience’ in the social service sector.

Lived experience – aside from being society’s dismally constructed and unimaginative label – is a discount code.

It is the box – rather ironically – prior to clicking on pay now which when filled reduces the cost of your online purchase.

It is the restricted view seat at a sporting or entertainment event.

It is the sticker which says special offer, approaching sell by date or the flat packed furniture box which declares it’s on special offer with only a few key parts missing.

In a past life I would speak of brand management, marketing and language or communication strategies as part of a wider role. In my humble opinion, this specific brand (an intentionally chosen term) is in dire need of a compassionate makeover.

You know, when I listen to some talk of those with lived experience, I shudder to think what logo they would attach to this brand and where on the body they would like this label displayed. Should the bar code generate a loud bleep when one of these flawed individuals crosses a threshold we deem to be off limits?

Labouring the point? Too harsh, dramatic, without foundation or overly simplistic? My own lived experience and listening to others with varied lived experience backgrounds would sadly suggest not and if it takes a little confrontational language to spark debate that’s fine by me.

Again, ironically, this label is predominantly used within a sector dedicated to working with those with lived experience i.e. people who should know better and is most likely born out of a genuine desire to soften attitudes as well as fight pre-existing prejudices. The problem with attaching any label is it potentially removes the human being from the equation and creates a perceived value (in this case to some with lower ethical standards) as many consumer advice experts will attest to when promoting own label brands over their more glamourous counterparts.

Social media influencers, bloggers and even those privileged to have a platform in the media have somewhat enthusiastically lined up in recent weeks and months to declare that lived experience is not only valuable but that it has a key role to play in the planning and development of services moving forward. You often get the impression that this is no more than a soundbite without any real purpose or plan behind it or a drive to be seen to be politically correct.  Does this speak to a shift in real value or an attempt to tick another important political box, I guess only time will tell.

I agree wholeheartedly that those with relevant experience of systems in this country should be involved at the heart of change but it needs to be on terms that represent the true value of their input. Not purely on terms that suit the political landscape today.

Community Justice is an inspiring concept and should embrace the entire community as equals not with some more equal than others. That ethos must extend to those with lived experience.

It is incredibly difficult not to be cynical when reading posts or articles talking up the value of lived experience because what you witness taking place is at times far removed from this stated aspiration. In fact reading output and listening carefully to those blessed with voices of influence as well as position to drive change it feels like at some point in the near future there is a very real danger of a box being ticked – in terms of lived experience inclusion – with no great impact made or change taking place other than a real opportunity being missed in preference of scoring inexpensive public relations points.

That could, admittedly, be a misread of the constantly shifting plates of the political landscape.

Over the course of the past nine months or so, on this incredible personal journey, I have lost count of the number of times I’ve been asked to advise, offer opinion, do someone “a wee favour” – from messaging to marketing to First Time Inside services – all free of charge by professional people. In some it speaks to a deep rooted prejudice where your mistake in life, as they see it, merits no better treatment, in others it’s simply a shamefully opportunistic manoeuvre dressed up in a layer of faux empathy and in others it is as straightforward as having no respect for anyone’s time but their own. It could be argued that the variants can overlap and co-exist but that’s above my analytical pay grade.

Either way it is easy to end up with a load of dried skin under your fingernails but an increasingly irritating itch on your own back.

On Tuesday of this week I was travelling from Edinburgh to Glasgow by train when I came across an article, shared by Community Justice Scotland on social media, written by Karyn McCluskey, CEO of Community Justice Scotland- whose stated aim of making Scotland the safest country in the world is a real demonstration of aspiration – in The Scotsman newspaper.

Looking beyond prejudices to understanding the value and importance of including people with lived experience of prison. Image: Rohan Makhecha on Unsplash

Looking beyond prejudices to understanding the value and importance of including people with lived experience of prison. Image: Rohan Makhecha on Unsplash

After reading I immediately tweeted “excellent piece” and then after reading through again tweeted “that an overhaul of lived experience value needs to take place”. I could understand if someone felt there was a slight contradiction in the messaging within my own output but I propose both points can comfortably co-exist.

It was excellent because it screamed humanity in almost every syllable but it also led to my thought that there needs to be a radical rethink on lived experience value because it referenced some of the dangers of sharing experience and highlighted ways in which the system can inadvertently or otherwise exacerbate trauma or at the very least present huge challenges for those courageous individuals who feel sharing their experience is important. Sadly, it also highlighted for me the potential for those sharing their experiences to be exploited, for want of a better term, by those who ask or indeed expect them to share in the first place.

From the same article “Not everyone knows what they’re opening the door to when they decide to share their story; talking through the potential repercussions is vital and must be the start of any conversation about speaking publically. Next is deciding why you want to share your story; to inspire hope, provoke change or highlight injustice? It can’t be because someone else wants you to.”
As one who has just succumbed to a request to speak at an event after passing up media opportunities this resonated deeply.

Training and guidance for those asked to share experience should be a prerequisite not an optional extra. I suspect there are additional training or supportive provisions which could also be engaged to protect the individual. This training should also be, at least in part, facilitated by those who have lived experienced or relevant experience. You don’t necessarily need to go to the north pole to understand it is cold there but utilising relevant expertise can only be a benefit.

We need to ask what is the organisational motivation for asking that person to speak and if we are asking for that emotional output we must also ask if we are living up to our responsibilities as employers, representatives or even fellow human beings. For example, having attended conferences and events around trauma and ACE’s I have been struck by the number of people who watch a speaker whilst also holding their mobile phone up in record mode prior to sharing clips on social media etc. Yes, there may be a duty of care with organisers and hosts to permit or prohibit this but there should also be a duty of care to fellow human beings who are baring their soul to a room full of delegates not to assume that this is acceptable.

Unlike Karyn and many other inspiring individuals I’ve been privileged to meet within this justice sector over the past months I acknowledge that I am a relative newbie to the arena. Put simply a novice of sorts, but a rookie entirely passionate about contributing to positive change with a very clear ethos on how best I feel I can achieve that.

I cannot pretend to share the practical expertise or knowledge base gathered over years of professional experience by those such as Karyn and her peers but my unquestionable, determination that human beings should be engaged in a spirit of respect and common decency underpins everything I aim to achieve and is without fear of contradiction the equal of anyone within the sector. Engaging with kindness should be the very least we do when we engage with our world every day. To many I realise that sounds almost evangelical, which in itself is painfully sad, but in reality a baseline of respect is a simple well-established foundation for improvement in all walks of life.

That baseline allied to a lifetime of experience honing entirely transferable skills gives me hope that a small contribution can be achieved.

I meet people regularly also from all walks of life who challenge that outlook many of them heavily influenced by years of institutionalised working but as my dearly departed and much-loved father used to say, “the world would be a boring place if we were all the same kiddo”. I have missed my Dads kindness and love in my life for almost twenty years now but his wonderful example, alongside his memory, lives with me every single day in life. That relationship I recognise now more than ever was a luxury many are not afforded and that makes my drive to engage with kindness even more relevant in my humble opinion.

Gerry Hamill from First Time inside warns against including those with ‘lived experience’ as a tick-the-box exercise. Image: Stanislav Kondratiev on Unsplash

Gerry Hamill from First Time inside warns against including those with ‘lived experience’ as a tick-the-box exercise. Image: Stanislav Kondratiev on Unsplash

From that vantage point I am at times utterly dismayed even ashamed at the way those with so called lived experience are treated by people not who should know better but who absolutely know better but do it anyway (like our prison officer in the first diary excerpt or the criminal justice social worker in the second excerpt on our First Time Inside blog).

That same viewpoint has led to my working on a new development called Hidden Voices, a project aimed at offering a safe platform for those with experiences they would like to share to do so. The pledges already received in terms of written contributions at this early stage are truly humbling and the potential for collaboration with supportive partners also welcome.

When I embarked on this journey and was presented with the challenge of creating a voice which not only had something approaching relevance to contribute I also had to find a mechanism to do that. When I looked at options – or as I in previous world would have called exploring concepts – and discovered First Time Inside as a possibility I was honestly stunned. Stunned because no similar service existed, something so basic in terms of human decency and in that surprising realisation that service provision gaps so basic existed this crazy ride began to the point that today I find myself talking about lived experience and those with that experience in such an impassioned way.

The First Time Inside blog is not about me, it never has been although I’ve utilised my own experiences to populate the content, it has always been and always will be about offering reflective opportunities – in a professional manner where possible – for those who have no voice or no platform to have that voice heard. Please read our other posts if you get the chance.

There are a great number of hugely talented, undervalued individuals who have the capacity to contribute to a discussion on real change. I have had the honour of meeting quite a few of those people and I have chosen not to embarrass them by mentioning them here today.

My experience of meeting them has seen me acquire a genuine admiration for their courage and resilience. I see wonderful human beings who are not waiting to be asked how they can help rather they are just getting on with it. Their motivation is simply to help perhaps more should adopt their style.

Let’s not consider creating a working group of lived experienced individuals to support organisational efforts, for example, unless we truly in our hearts can say we are doing it with a realisation that we are employing expertise we do not have personally with the value reflected in that engagement. Let’s not invite people to join the party without first removing that glass ceiling of imposed aspiration. Let’s not speak about the value of lived experience without first displaying that value in the way we engage it. Until then lived experience is in danger of being no more than a label which will continue to lack respect. Lets stop taking and start walking.

It’s not good enough to simply tick a box, we are better than that and I am confident many want to demonstrate that. Let’s be noisy together. 

This blog was originally posted on First Time Inside.