For as long as I can remember I have experienced seasons of low mood, but I find that even if I feel quite down, I can still feel like attending events and mixing with people.
If I’m having a bad day, I push myself to approach new people, strike up some small talk and make a connection.
Zoe E Breen
Or sometimes I don’t. Instead I sit quietly on the edge of things, wishing I felt more sociable or that someone would just come and talk to me.
One thing that I have learnt is that almost nobody enjoys the awkwardness of having to ‘break the ice’ at these kinds of events. I just think it’s harder if you feel, think or communicate differently from other people.
The birth of Care Labels For Humans
One day in
2014, when I was feeling particularly reflective, I mused upon the fact that
the clothes we wear carry care labels so when we put them in the laundry we
know how to look after them to keep them at their best.
And I asked myself – how come there was something like this for our clothes but not for ourselves?
I’m going to fast-forward through some of the next bits. What you do need to know is that over the following years I experienced what I now describe as ‘catastrophic loss’.
In 2014, shortly before these events I lost my dear cat Cosmo who had been with me through thick and thin for sixteen years.
They were
not easy times and I needed Care Labels more than ever.
OK, so what are Care Labels For Humans?
It was through attending a F*ck It ‘Do What You Love’ retreat in Italy in 2017 that I was finally to reflect on what really mattered to me. When I got home, I started work to prototype and test a very basic version of Care Labels For Humans.
This is probably a good point to illustrate what Care Labels For Humans looks like now. You can wear your Care Labels on your lanyard card at event. This video might give you a better idea of how they work.
The card has space for your name, your name on social and your preferred gender pronouns.
You can then add labels which describe how you would like others to approach you, how you’d like them to behave around you and the kinds of things that are important in your life.
So, in the
example you see here. The flower represents openness, inviting others to ‘step
right up’, the dots in the circle mean you can ‘ask me anything’ and my
interest labels are travel, healthy habits and shows.
The current deck features 3 ‘Approach’ Labels (A), 6 ‘Behaviour’ Labels (B) and 22 ‘Chat / (Self)-Care Labels.
And what can I do to help?
I’ve had so much great feedback from user testing mostly done with my Manchester Girl Geeks group, and from people suggesting different applications of Care Labels For Humans that I’m now developing several related products which I plan to bring to market later this year.
I’m running a Crowdfunder campaign to raise money to pay a third party to undertake a product validation project. I work full time so it’s not something that I can do myself.
I’ve
produced some great rewards for the Crowdfunder, as well as event kits, there
are Care Label definition cards and an exclusive journal which allows you to reflect
on your Care Labels privately.
This
project has been a labour of love for me for over five years. Many hours of
love, thinking and cutting up coloured paper have been involved.
I am deeply grateful for any contribution that you can make. Please pledge and share with anyone else you think might be able to support Care Labels For Humans.
Having “survived” primary breast cancer, Jo went on to be diagnosed with metastatic ‘stage 4’ cancer, which was detected in a number of sites on her body. She was never told the survival statistics but knew she had a median life expectancy of another two to three years.
Jo Taylor set up After Breast Cancer Diagnosis (ABCD)
But Jo had other plans, she wanted to live well for the sake of both her family and herself. She also knew that she wanted to support other women.
She knew that exercise made her feel better and she wanted to raise money for the Christie cancer hospital and loved leading 23 people in a 62 mile charity cycle ride between Manchester and Blackpool.
Jo wanted to help other women living with breast cancer and the harsh treatments associated with it. This led her to set up After Breast Cancer Diagnosis or ABCD as it’s known.
In between rounds of treatment, she started running retreats which challenged the women to be active and motivated through cycling, Nordic walking, running and yoga. In addition and the friendships developed by the women on the retreat flourished with small support groups.
Through her own experiences and research Jo has begun to gather evidence for the role of exercise in preventing secondary cancer, ‘prehab’ exercise in preparation for surgery and the mental health benefits of exercise for those being treated for and living with cancer.
Last year, having won Big Lottery funding, she ran retreats for 38 women in Saddleworth with another five retreats planned for 2019.
Jo has created a movement, just look at the hashtag #busylivingwithmets on Twitter. She tells the people that she helps “you will be lapping everyone on the couch”, it’s about making little changes that can have immediate and future benefits.
She urges healthcare professionals to encourage exercise and good nutrition for recovery from cancer and its treatments. “Exercise really is a pill” she says, both for mental and physical wellbeing.
I’ve been to several TEDx talks in the last few years and was tipped off that Oldham had its own offering a few weeks ago.
Reading through the list of speakers a few life stories spoke to me and I bagged myself a ticket (for what turned out to be a sell-out event).
Andy Hall (left) with the speakers for TEDx Oldham 2019
I can’t do all the speakers justice here so I’m going to pull out a few ideas which grabbed my interest from the content-packed day.
TEDx has superfans…
Diane Atkinson doing her bit for Ruth Major’s ‘1 piece of rubbish’ movement. Picture courtesy of @DianeAtkinson
As I arrived at TEDx Oldham at Oldham Central Library I was delighted to bump into Diane Atkinson, who I know through Manchester Girl Geeks, and her friend Wendy who are both active in the Women’s Institute.
They told me they went to every TEDx they could get to and were particularly impressed with TEDx Bollington in June, where our host for the day Andy Hall had shared his mental health and exercise story.
Speaker notes
Andy Hall
Andy is bursting with passion for Oldham, introducing the event with the words: “We love this town”.
Joking about his own recent TEDx talk he says that he found himself waking up talking to himself as he rehearsed his talk. He introduced the following two speakers before the main line-up.
Ruth is on a mission to clean up rubbish, with the simple message that picking up #1pieceofrubbish is something that everyone can do. She challenged us to do just that over the lunch break (see the picture of Diane doing her bit above).
Samah Khalil
Samah is Oldham’s current @Youth_Mayor and spoke with passion both about the town she lives in and the potential of everybody to make a difference.
Jo Taylor
Having “survived” primary breast cancer, Jo went on to be diagnosed with metastatic ‘stage 4’ cancer, which was detected in a number of sites on her body. She was never told the survival statistics but knew she had a median life expectancy of another two to three years.
But Jo had other plans, she wanted to live well for the sake of both her family and herself. She also knew that she wanted to support other women.
She knew that exercise made her feel better and she wanted to raise money for the Christie cancer hospital and loved leading 23 people in a charity cycle ride between Manchester and Blackpool.
Jo wanted to help other women living with breast cancer and the harsh treatments associated with it. This led her to set up After Breast Cancer Diagnosis or ABCD as it’s known.
A series of unusual events led Sean to setting up successful tech businesses in the UK in his twenties. He was always one to push himself out of his comfort zone and racked up a series of glamorous jobs in Australia and the Far East which included teaching the owners of yachts to dive.
A chance meeting with actress Kate Hudson made him realise that he could go for what he wanted in life and hoped to become a videographer. On returning to the UK for training he met his girlfriend Hannah and his priorities changed again.
Despite having set up his tech company Mercarto and forming a business partnership with Lawrence Smith CEO of UKFast, Sean says he’s always felt like an imposter and puts his success down to his daring attitude.
Heather Price
Heather, like Samah Khalil, sits on Oldham’s Youth Council. She can see that our climate and environment are in crisis and is passionate and vocal about what needs to be done.
Heather appeals to politicians to stop seeing ‘success’ in terms of money and look how we can preserve our natural resources.
Raam is an engineer with a background in mathematics. He thought maths was difficult and was taken by surprise by the complexity of the English language and culture when he left his home in Bangalore, India to start a masters degree in Sheffield.
He was surprised to face the phenomenon of queuing and illogical pronunciation of words and shared his MUM model for living, ‘Manage, Understand, Master’.
You can hear more from Raam, who is the director of engineering company Equitus on Twitter.
Hayley Lever
While our bodies and minds benefit from movement and activity, many modern jobs and lifestyles cause us to lead increasingly sedentary lives.
Brisk walking for thirty minutes a day is enough to helps us feel better and Hayley Lever is on a mission to get everyone moving more. This is an inclusive campaign which nudges people towards manageable movement.
Hayley has written about leading the ‘GM Moving’ campaign and her TEDx presentation and the #activesoles message.
Have a read of her personal blog where Hayley writes with passion about her role and reveals why Manchester’s mayor Andy Burnham announced that council staff they could wear trainers to work.
Rubbi Bhogal-Wood
While Rubbi relied on her specialist social media skills to run her businesses, she started to experience negative emotional effects of using social platforms.
Despite her businesses thriving, Rubbi felt anxious and overwhelmed when she felt there were not enough ‘likes’ being added to her pages.
It was only at this point that she began to educate herself on the mechanisms behind social media, the algorithms that were set up to make sure that we always came back for more by delivering a dopamine ‘hit’ each time our posts received a ‘like’ or comment.
Having set up the Uganda Marathon to bring people and money into the country Henry realised that he was not a ‘superhero’.
Despite the millions of pounds he’d raised making a difference to the African nation, he realised he was possibly not the best person to run the project and handed it over to a Uganda colleague, Joshua.
Henry is honest about what he has learned from the experience and the charity he set up now has an all-Ugandan board of trustees. He gives others looking to fundraise or help others the following advice:
1. Ask yourself why you are trying to help these people
Photographer and artist Lisa Marie Gee says her life changed when she had a breakdown 16 years ago, getting involved with the Time To Change who she is now an ambassador for.
In her recovery she picked up a camera and starting taking portraits which conveyed messages about getting better from mental health difficulties. What started with contributions from friends grew through word of mouth and the ‘Open Shutter’s project attracted some high profile subjects.
The first exhibition took place at Gallery Oldham in September 2018 and you can learn more about Lisa’s Open Shutters project on her website.
Doddz
Having being branded ‘dyslexic’ and then ‘very dyslexic’ in his school career Doddz has succeeded as a commercial street artist in the UK, going on to set up his own fashion brands.
He describes himself as a ‘wolf in sheep’s clothing’ and is clearly happy with the place his career has reached. He has some wisdom to impart:
1. Attitude matters – challenge the word ‘impossible’.
2. Self-belief – follow your passion.
3. Surround yourself with people better than you AND try to be the hardest working person you know.
4. Don’t wait – what’s your goal with your limited time on earth?
A judge and lawyer, Marzia fled from Afghanistan after being attacked for her political beliefs. She says, as an asylum seeker, she found her home in Oldham – a place she is clearly fond of.
Her career before arriving in the UK had been varied and included setting up a school in Pakistan for Afghan refugees. When she arrived here she had no English and took up classes as Oldham College.
She describes English as her ‘oxygen’ and has always been keen to promote educational opportunities for girls. She is a trustee for the charity City of Sanctuary which works to welcome refugees to the UK>
“Always stand against injustice – if not you, then who will?”
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 FellowBaljeet 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.
