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.

Street art tour in Manchester’s fashionable Northern Quarter

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Hayley Flynn aka Skyliner

Manchester is brimming with street art and the Northern Quarter, playground of the hip crowd, has probably attracted more than any part of the city.

I took a walking tour with award-winning local expert Hayley Flynn AKA Skyliner. I learned more about the street art I had seen and was guided to pieces I would have missed on my own.

Hayley’s knowledge of the history of the Northern Quarter was extensive, giving us background on each artist and work.

Delivered with great humour and a true passion for our burgeoning city of Manchester.

Look up!

These days we can find our tendency to look down at our phones means that we miss the beauty and spectacle in our own surrounding. So, using my  mobile purely for its camera function I set off on a mini adventure.

I’m not going to give a blow by blow account of the tour or tell you where you can find the art – you really should try Hayley’s tour  yourself.

Below is selection of my snaps from the tour. Find out more at Skyliner.org

 

Mood Nudges: The Science Bit

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I’d like to give a massive thanks to everyone who attended my workshop on ‘Mood Nudges’ as part of Manchester Girl Geeks (MGG) event for Geek Mental Help Week.

I’ve written about the workshop in more detail on the MGG website, where we used exercises from Jon Cousins’ Nudge Your Way to Happiness: The 30 Day Workbook for a Happier You to generate simple mood-boosting ideas.

You can read more about what we did in the workshop here.

The Science Bit

At the end of the workshop I alluded to some recent research Jon that suggested the Mood Nudges 30 day programme made a real difference to those who completed the workbook.

Jon has given me a sneak preview of the findings which are outlined below:

“We set out to understand whether using the book Nudge Your Way To Happiness can help people who are clinically depressed.

If we measured their depression with a test that doctors use, before and after working their way through the book (which takes 30 days) would we see a difference?

The test we used, called the PHQ-9 – the 9-item Patient Health Questionnaire) – produces a score between 0 and 27, with 0 meaning no depression, and 27 representing the most severe depression possible.

The score range is divided into five bands that, apart from the highest division, are drawn at five-point intervals.

Healthcare professionals use the PHQ-9 to help decide, in part, what treatment – such as antidepressants or psychotherapy / counselling might best help a patient.

They also ask patients to complete the test as one way of determining whether or not a chosen treatment is working.

When the PHQ-9 is used to measure progress, the rule of thumb is that a reduction in score of 5 points or more over a period of 4-6 weeks means the current treatment regime is working, and should therefore be continued.

We asked 51 people to use the book for 30 days, completing the PHQ-9 before they started, and again when they’d finished.

The participants were a randomly chosen subset of readers of the Moodnudges blog who weren’t pre-selected on the basis of being depressed, so the sample included a range of individuals from those who had only the most minimal depression to others who were experiencing moderately severe depression.

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Click for bigger version

The results, which can be seen in graph form, show two important findings:1. Across the board, the average reduction in PHQ-9 score over 30 days was 5.3, suggesting that using Nudge Your Way to Happiness can be as clinically effective as antidepressants or psychotherapy.

2. The greatest reductions in score were seen in those who were most depressed to start with. On average these participants’ scores fell from a level definitely placing them in the Moderately Severe category to one at the very lowest end of the Moderate division: only a whisker away from being labelled Mild.

Future work could involve working with a larger sample, and structuring the study as a randomized controlled trial. But these early results do seem promising.”

Resources

Find out what we did at the Mood Nudges workshop for Geek Mental Help Week hosted by Manchester Girl Geeks.

Mood Nudges website and daily blog: http://moodnudges.com/

Moodscope (free and paid options): https://www.moodscope.com/

Geek Mental Help website

Geek Mental Help on Twitter

Thanks to Mark Brown aka @markoneinfour and my brother Ellis for helping me develop the workshop format.

Cheer Up Love…

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In the business lounge of Norwich International Airport

Dear CheerUpLove.com,

I’m sorry I’ve neglected you. I’ve been busy, but that’s not the only reason that I’ve not visited you. True, I have been spending more time in Norwich of late, and granted, I’m working on an exciting new project.

I’ve been off courting inspiration at Thinking Digital London and Manchester’s Future Everything ideas-fests. And I’ve had some really interesting thoughts, which are currently in the incubation stage so not quite ready for you yet!

I have been enjoying doing my work as a board member of digital inclusion charity Tinder Foundation (now luckily renamed the Good Things Foundation).

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I’ve not shared ‘My Week In Happy’ for a while, but that doesn’t mean that I haven’t felt happy.

There is some sadness, but I don’t want that to get in the way of talking about the good things. Indeed, it’s possibly more important than ever to focus on the positive.

I have a few exciting projects in the pipeline, some of which I’m keeping to myself for now! In the meantime, I’m sharing with you some paintings which I unearthed in my archive (under bed storage).

I’d all but forgotten these colourful pieces and I plan to display them in my apartment. I can’t believe that I’ve already been here for a year – I feel so lucky!

Soaking up the Gong Bath

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With gong practitioner Martyn Cawthorne at his home Gong Spa

It is Saturday and a rainy Manchester afternoon and, along with two friends from Manchester Bliss group, are visiting the home of Martyn Cawthorne – gong practitioner and founder of Gong Spa.

Martyn gives the three of us a warm welcome before inviting us to prepare for the ‘gong bath’ which we have all enthusiastically signed up for.

What is a gong bath?

He describes the experience as:

“A unique experience in which you are bathed (clothes on!) in the sounds and vibrations of the gongs, which lend themselves to enhanced states of well-being, relaxation, happiness and pleasure.”

I’d had one previous experience of taking part in a large gong bath in a church hall, but what Martyn has to offer is a small, safe and intimate space which could be shared by up to three people.

The space is calm and softly lit, with four impressively large gongs suspended from a frame in the room and another resting on the floor. Other instruments are scattered around the room and will form a part of the gong bath experience.

We have a quick chat with Martyn about our needs and reasons for being there, before settling down on a bed and wrapping up with blankets. He explains to us that as the gong bath experience can be both physically and mentally intense, he’s going to give us a relatively gentle time.

What happens in the gong bath?

The session is an hour long and it’s important to feel comfortable. We’re  provided us with some egg-shaped shakers should we wish to indicate that the gong sounds have become too intense (we didn’t need them).

Once relaxed on the bed, the time seemed to speed by. Martyn opens the session with some ambient gong sounds before building up the intensity and varying the soundscape with other percussion instruments.

The vibrations from the gongs were instantly relaxing and I felt the sounds resonated throughout mind and body with a calming richness.

What does it feel like?

I felt my mind begin to turn over thoughts as it prepared to relax and let go, it was then that I started to locate the sources of tension in my body.

First comes a fluttering sensation in my side, before I develop an awareness of where the tightness across my shoulders originates – this makes me mindful that I need to take care of my posture each day.

As we opened our eyes at the end of the gong bath, it soon became clear that we had all had powerful but very different experiences.

One bather was so relaxed that she fell asleep (this is apparently quite common and does not prevent the gong bath from working). Another spoke of the vivid images she’d visualised.

We all felt that the gong bath had been deeply beneficial and wished to return, either alone or with partners.

Where can I take a gong bath?

Taking a gong bath aids meditation and is great for relaxation either individually, as a couple or a group.

Gong Goodies

Gong Spa – home of everything gong including dates of gong baths in Manchester and surrounding areas

Northern School of Soundsmiths – learn to craft sounds for your enjoyment and the benefit of others

Gong Spa Experiences – tracks to relax or meditate to – available to download

Why I interviewed Helen Arney

Well, “Why wouldn’t you want to interview Helen Arney?”, you might ask?

Helen Arney (Photo: Vera de Kok)

Of course she is super-smart, funny and chic, that’s undeniable. Which is why, when I was booking my tickets for Festival of the Spoken Nerd at The Lowry, I was struck by the fact that she did not have a Wikipedia page dedicated to her.

Almost a year before the gig, I’d been to a Wiki Edit workshop run for Manchester Girl Geeks by Wikimedia UK.

From this experience I learned two things:

  1. Editing Wikipedia is really pretty easy
  2. More than 80% of Wikipedia editors are male (according to some research)

What did I do with this knowledge? Pretty much nothing until I noticed that Helen Arney didn’t have a Wikipedia page.

Then I remembered something.

Fellow Manchester Girl Geek Karen Pudner (@kpudner) had created a Wikipedia page for code-breaker Joan Clarke, who worked alongside Alan Turing on the Enigma Project at Bletchley Park.

Karen started the Wikipedia page in 2013 having attended a previous Manchester Girl Geeks Wiki Edit Day.

This was the year before Joan’s contribution to the team at Bletchley Park was recognised in The Imitation Game. Since then the page has been added to and edited by dozens of other users.

If another girl geek could write a woman into Wikipedia then maybe I could give it a shot?

I was so excited by the prospect that it was with some abandon that I launched into writing my first lines of words on Wikipedia.

So I’ve made a start on Helen Arney’s page, which is currently a described as a ‘Singer stub’. If you would like to add an edit of your own I’d be extremely happy.

So, why did you interview Helen Arney?

As well as her obvious fabness (see above), I thought it would be lovely to have something that I had written to be linked to from the Wikipedia page. And reciprocal linked (of course!).

You can read what Helen had to say on physics, funnyness and frocks right here.