What My Teeth Are Teaching Me About My Past & Politics

It’s been a while since I’ve blogged. And certainly, this blog will seem a bit more “off brand” than normal – because it’s about my Teeth.  Have I ever written about my teeth like this before? No, no I haven’t.

In fact, until around 9 months ago, I just didn’t even think about my teeth at all.

Here is a fun fact about me:  I am kind-of scared of the dentist. I know dentists are cool, great & amazingly smart and skilled people – but the environment & process of dental care FREAKS ME OUT.

I don’t know where this fear has come from. I think I learned it from my mom, who also hates going to the dentist and is probably worse than me at attending.  Until this year, my nan had to make all my dental appointments & take me because she knew I wouldn’t have done so myself.  Both my mom and I probably wouldn’t even be still registered with a dentist if it wasn’t for my nan. (Praise the nan!) And let me tell y’all, it’s HARD to get on a good NHS dentist list these days.

This is all interesting because whilst I’ve always known to brush my teeth 2 times a day, and “look after them” & reduce my acidic & sugar intakes and likes – I’ve just never appreciated the importance of what my oral health, care & history means on my general overall health.

Because I’ve grown up in a very precarious life – issues of not sure if money/food would make it to the end of the week, crappy food at school, things like stress from domestic violence & homelessness makes it so you don’t really pay attention to something that is just a given.  Because I’m genetically really lucky with my teeth (I had to have something good in these genes!), my teeth are all kinda naturally straight and normal looking. I’ve not even had any wisdom teeth yet. As such, because they’ve just been chill – i took them for granted whilst the super invasive stuff of my life took over.

I quickly learned from around age 13 that Coca-Cola was a great thing for energy. A natural night owl left me sleep-deprived, alongside having to be semi-aware for aggressive behaviour in the house.  It was cheaper than the food that would get me that same energy, so I could save my dinner money for other things I needed instead, or if there was no dinner money.  It was caffeinated & kept me full for quite a long time.  And so the semi-addiction to Coca-cola happened, and so did the true start of my poor teeth health.

My dentist at the time just never really communicated to/with me. He knew I wasn’t a fan of going to him and he could see what I was doing with my teeth – but never really broached the subject. Until I was around 18 when he told me that now I was an adult he could tell me that I was brushing away all the enamel from my teeth after consuming sugary drinks, so I should wait at least 2-3 hours before brushing. Why didn’t he tell me this literally 4 years earlier now that I had a mouth full of fillings?   So many questions & potential answers.

It was around the age of 17 that I started to feel a deep shame about my teeth. But it wasn’t strong enough yet & I didn’t understand it enough to pay too much attention to this feeling about it every time i brushed my teeth.

I started doing that, the waiting to brush my teeth, rather than giving up the Cola. Now I was a university student with no money either. Which was fine. My upbringing had prepared me for this lifestyle. Needs for new fillings became less with this new info of waiting to brush my teeth, but the dentist would opt for replacing old fillings if he couldn’t find new cavities.   But now the shame of all of this had really started to seep in.

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Occasionally, somehow, people’s teeth would come up at uni. “I’ve never had a filling!” many people would joyfully announce. Some people would say, with shame, how they had to have 1 or 2 fillings, but they only happened when they were younger! Never now!

 

I’d just pretend I hadn’t heard the convo quite often. For me, my teeth were half mental. Luckily all of the fillings were on my molars and pre-molars. But there was a shame I couldn’t explain about my oral health.  It was a bit like smoking, I guess. You know it’s bad for you – but you do it anyways. I felt that if I was brushing my teeth – and coca-cola helped me get through some super tough times with lack of money and energy / good food then it should have been fine. I mean, it was just a drink & I was doing what I was told with brushing. But what I hadn’t clocked around about now, was that my uni friends didn’t have any cavities or many, and were ultra proud of this status because they had much more secure home life & came from more money than me.  It was that middle class, affluent bubble again, that comes in many disguises. Still, I knew that I was responsible – ultimately – for my teeth. Poor background or not.

Over the past years, I have dramatically lowered my consumption of full-sugar drinks like Coke. I do a lot of a ZERO & MAX low calorie no sugar drinks now.  But they’re still carbonated & acidic.

 

The last time before this year that I went to the dentist was in 2016 after I had finished Radiotherapy. One of my back teeth had cracked (from a stress clenching that my dentist never told me i was doing ). I was eating some chocolate after my last case-discussion & a whole massive chip came off my tooth and  i was due to go to USA for the summer. No way did I want potential toothache in USA so I went to the dentist where he proceeded to fix my tooth & gave me more fillings/replaced them.

It was around April 2018 – and that same filling from 2016 fell out. I told myself I’d go to the dentist as soon as I had saved up the money.  I had saved up the money but I was still refusing in my mind to get it fixed.  It didn’t hurt or anything, just annoying when food would get stuck. I kept telling myself, I just don’t have the time. I was very reluctant to pay to feel super bad at the dentist from shame and fear. I left it, whilst I kept telling myself I’d do it soon.

In November last year, I got really sick. I was running 40+ C temp, but no one could figure out what the infection was.   I went to Budapest a few weeks later for my friends birthday weekend, whilst on long-course antibiotics. We were out in a ruin bar, and it was so cold it started to snow. I was drinking a Coke (i still felt gross so alcohol wasn’t for me).  It was there where I got the worlds worst ear ache/face pain. It was proper NEURALGIA. induced by me messing around my TMJ & the cold. The panic overcame me when i thought it could be my teeth. i sat there outside checking my teeth like a crazy person but they didn’t hurt. the gums looked fine. No signs or redness of abscesses. But the pain was INTENSE.

I let that face pain go on until Jan 2019 where it was getting more and more frequent and intense.

I made my 1st ever dentist appointment (remember that my nan had done them all until now) & it had been so long since I had been that my old dentist had retired.

in the meantime between the new appointment, I started googling potential causes of the pain & convinced myself that I had gum disease. It matched everything I had subconsciously told myself about my worth & my habits. I even got my affulent PHD mates to show me their gums – and even though I’m not dentist, i knew their oral health was better than mine.

I went to my appointment & I said to the new dentist that I was nervous (he was like “why it’s just a check-up?” & I was like *I know* but still dunno). I said I had the insane FACE pain, but none of my teeth hurt. I had convinced it was an upper wisdom tooth coming through, not anything to do with the lower filling-less molar as the pain wasn’t no where near my lower jaw. He checked it all out & told me it wasn’t the wisdom tooth  but he might need to remove the fillingless tooth if  he couldn’t fix it.

(I’m leaving out the part where he questioned my dental history accuracy due to the previous dentist filling out my dental record inaccurately?! And made out that I had done dental elsewhere – what a trust exercise!?) 

 

A potential tooth removed.  I ask if it would hurt, he said the no-dental procedure should hurt. LOL LOL LOL. He said I would need a long appointment. I booked it & paid, relieved that I didn’t have gum disease.

On the day of the filling, he told me he couldn’t do it as the tooth was “far too gone”. He said he could take it out now. He couldn’t even do root canal because something had grown? I asked him if i had caused for it to get like this because i had waited so long.  He was a nice dentist though and said it wasn’t my fault. Instantly trying to help me unshame myself.

 

(i do think it was because I did leave it too long, but it was nice of him to not blame me).   OK i thought, I’m sure i can let him remove this tooth, RIGHT NOW. He was really good. He explained everything, and talked me through it all. I never knew until now that I actually had a choice in dental treatment. my previous dentist would just *do it* No real discussion.

There’s a funny story in this tooth removal process – like the fact that I had gone to this appointment on my bike- apparently you can’t ride a bike after surgery? who knew! and i wanted to go straight to work- to lecture. but i actually couldn’t talk. good times.

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But a root got left behind. The dentist let me keep my tooth. I don’t know why i said yes like a weirdo – but I guess I thought that since I had paid £60, i might as well keep it as a reminder.  He made me come back to him for 2 follow up appointments, which i thought was very good.

 

In the meantime, I started researching tooth stuff. And I became shook about the link between social inequality and ACES and oral health & loss of teeth.

Current dental research focuses on health conditions such as diabetes and lung disease that can be risk factors for oral health.

Haena Lee, a postdoctoral researcher at the Institute for Social Research at the University of Michigan, assessed the impact of adverse childhood events on oral health—specifically, total tooth loss—later in life. These events included childhood trauma, abuse, and, to a lesser extent, smoking.

“The significant effects of these adverse experiences during childhood on oral health are persistent over and above diabetes and lung disease, which are known to be correlates of poor oral health,” Lee says.

Lee drew data from the 2012 Health and Retirement Study, a nationally representative longitudinal study of older adults and their spouses in the United States. The study includes a core survey collected every two years and a supplemental survey every off year. In 2015, the supplemental survey asked detailed information about childhood family history.

Lee derived the participants’ oral health information from the 2012 HRS core survey and their childhood experiences, adult educational attainment, and poverty status from previous HRS surveys and the 2015 supplemental survey.

Using this data, she investigated three models of life course research: the sensitive period, defined as the time in a person’s life during which events have the most impact on his or her development; the accumulation model, which examines the effect of the accumulation of events over the life course; and the social mobility model, which examines the change in a person’s socioeconomic status during that person’s life.

Conclusion? Failing oral health in older adults, especially total tooth loss, may have its roots in adverse experiences such as childhood trauma, abuse, and low educational attainment. Findings also suggest that oral health in later life may be more influenced by accumulation of adversity rather than changes in social and economic position over the life course.

Read more about this incredible (american) study here: https://onlinelibrary.wiley.com/doi/abs/10.1111/cdoe.12463

 

After i had that tooth out & did this research – and saw why i felt shame for my teeth. They’re a sign of all the shit I’ve had to endure- abuse, homelessness, poverty, massive amount of stress and chronic illness. – it’s a record dug deep into my bones, and my shorted DNA now – that makes it look like I’m thick or that just don’t give a shit. And that my dentist of 15 years just didn’t really care about to ask or tell me stuff.

The trauma I’ve endured means I *REALLY* don’t like people looking in any of my holes where I have little control or can’t see. So that’s probably why I’m bad at smear uptakes too.  So it’ has helped to tell the new dentist I DO NOT LIKE this. And he explains everything now. (I also told my dr I wasn’t a fan of smears & she made them better too)

AFter the tooth out, I have become a bit obsessed about trying to look after my teeth better than I have ever done in the past. Plus, I have a bit of money that i can spend on this stuff now – where as 2 years ago I couldn’t even buy a general food shop. 

(i’m still drinking carbonated drinks – ooooops) But I bought my first ever supersonic toothbrush. WOW. Here’s another reason why poor people tend not to have brushed their teeth correctly – electric toothbrushes are INSANE & you can feel the difference.  And my teeth LOOK whiter!!! FOR REALS.  Now of course, we know that electric toothbrushes are obvs a defining difference between folks with flexible incomes and the poor (for those of us on a megabudget but enough to buy a new electric toothbrush – this is an amazing tooth brush for £21 https://www.amazon.co.uk/Electric-Toothbrush-Fairywill-Charged-Rechargeable/dp/B07M9ML7XP/ref=sr_1_3_sspa?keywords=sonic+toothbrush&qid=1563721336&s=gateway&sr=8-3-spons&psc=1 )

But this toothbrush came with instructions of how to brush my teeth & it’s timed. I thought I was brushing my teeth for 2 mins. Turns out I really wasn’t. And I didn’t know of the correct technique? 

I started really routinely flossing my teeth, but I had to watch youtube videos to help me learn how to do it properly?! Turns out I only know how to floss from TV & movies – and they just slosh some thread between your teeth. Which is alright – but it’s not the good/correct way to floss!? WHO KNEW? Why has this never been shown to me before? Apparently, you’re supposed to almost wrap the floss around each side of your teeth. Makes sense now I think about it!  I found Dental Hygiene with Whitney (Teeth Tooth Girl) – who is pretty amazing. She makes dental health look cool, fun and easy. Here’s a video of atalk through a dental cleaning (in USA): https://www.youtube.com/watch?v=uTiC467dwUM&list=FL3F7cPjI9Wp7P1uf9RTl8JQ&index=9&t=0s 

It’s wild to think I’m having to find how to do  this stuff ONLINE – MANY years later.

This mouthwash is gross but it really makes your gums amazing: https://www.corsodyl.co.uk/products/corsodyl/mouthwash/ And now I can eat ice-cream by biting into it!? I’ve not ever been able to do this for as long as I can remember without it hurting.

I usually chase it with it’s nicer tasting mouthwash: https://www.corsodyl.co.uk/products/mouthwash/ (fresh mint)

Though I’ve been using this recently as it was on offer and it’s like setting your moth ALIGHT lol. https://www.listerine.co.uk/products/fresh-breath/listerine-total-care wicked fresh breath though.

My dentist helpfully showed me this lil baby cute tooth to help brush hard to reach areas too : https://www.amazon.co.uk/Wisdom-Interspace-Super-Slim/dp/B01NB08GMX/ref=asc_df_B01NB08GMX/?tag=googshopuk-21&linkCode=df0&hvadid=310836173466&hvpos=1o2&hvnetw=g&hvrand=11693902512502109974&hvpone=&hvptwo=&hvqmt=&hvdev=c&hvdvcmdl=&hvlocint=&hvlocphy=9046280&hvtargid=aud-545671390501:pla-563452080186&psc=1

This past week, I got to see a MAXFAX doctor for the root of my tooth. And what i found out is another blog post for anyone struggling with facepain, TMJ, ear ache & chronic headaches. So come back for that.

BUT why did I write this post?

In my research I learned that Kids, after virus’ in the UK, the 2nd highest reason for hospital admission is due to tooth decay.  I’ve just had to find out how to properly look after my teeth, like technique, materials, length, etc – myself because no one was able to actively show me when i was growing up. Not even my dentist.

I’m working in Public Health & lots of my contracts tend to be about healthy active lifestyles – and yet i’ve come across very little in my research and events that I attend about this HUGE lack of compassionate & fun dental public health care. When i looked into the funding of it, it’s basically VERY VERY small. This isn’t fair & it isn’t right.

I feel ashamed about my oral health and there’s so many people out there like me. But i just wanted to say – don’t feel bad about it. It’s happened now,  I can’t help all the shit situations I have been in. But it doesn’t mean everything else around us has to pretend our painful lives don’t exist. lets get better going forwards. Lets take the stigma out of this stuff, because we’re not doing a very good job in the first place in ensuring people have the right knowledge to begin with, they can’t access to some of the better tools to help do it well and dental practices & research needs to be better at assessing a more holistic approach as to why people are doing things which might be bad for them, and help them with it. Rather than pretending it’s not there or the person just doesn’t care.

If you got to the bottom  of this post, you probably needed to hear this too.

Let’s change make dental public health higher up on the agenda

 

 

 

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Shame, Gratitude, (health) Care & Resilience: Working in Art & in Research

Shame. It’s a shameful thing.  To feel ashamed. It makes you feels weak. It feels like you’re kind of worthless. The other day, my GP shamed me. He told me that I just “need to suck it up & live with it”. (it being bad-ass headaches/migraines/face/shoulder pain) I’m not sure he meant to, but he did. I wasn’t even there for that. He tried to quickly move on – but it hung in the air & it is now burnt into my mind ever since. I keep replaying the moment inside my head of all the things I *wished* I had said in response to him. To call him out. But I stumbled over my words and I itched my head as I usually do when I feel socially inept and at a loss of words as all of the emotion came over me at once.

This moment, which I had gone for antibiotics for a chest infection (which i got!),  all came down to him reading some clinic notes that the physio had written. She had said that I take (over the counter) codeine about twice a month  for a 5-year chronic headache & INTENSE neck/face pain, but only when its pain scale 8+ & it’s grinding me down. And it’s true.   The neurologist prescribed me stuff for it 3 years ago – but the GP refused to keep on prescribing it. we tailored the drugs off – and now I just live in pain. I get it. I understand why he doesn’t want me on these drugs. It’s chronic pain, it’s probs a bit psychosomatic – but i do have shit wrong with me that would actually give me chronic headaches like hypercalcemia that gets so high sometimes I have to be hospitalized.  And also like, migraines are a real thing! But he doesn’t see that. And again, I do  it get the “no drugs thing”. That’s why I have adapted my own coping systems. I know stress makes it worse, Physio helps my neck & shoulder & gives me really good relief for a decent amount of time, and I know I need to sleep-in at weekends to give my body *Something* to building itself back up. I know the GP won’t give me shit for it – so I take the odd over the counter pain relief? So what!?  If he wants control over the stuff I am taking – then he should offer the support. But he doesn’t – so, I guess that’s structural iatrogenesis for you.

I have to take the pain relief when the pain grinds me down so much that I feel COMPLETELY worthless – like the pain makes all my left side of face feel numb and sometimes I can’t actually get language out. It’s embarrassing. My job is about communication – and sometimes i just can’t communicate properly with people cuz the headache/face numbness is so bad i loose my ability to grasp the correct word – or know how to spell it? It’s a weird sensation. It’s like having the worlds slowest seizure. But it goes on FOR DAYS. WEEKS. Even months if it’s SUPER bad like it was back in the radiotherapy training days.  It literally makes me feel like I want to kill myself – because anything is better than not feeling like you’re alive. I joke about this with friends at work. They laugh but pull me up on it. “You’re not serious though, are you?” they say. I just laugh and & say “i don’t know” because honestly on those days, i just – don’t know.  We get back to typing on our laptops and pretend we’ve not really exchanged this odd truth because it doesn’t sit well with who i am.  When the pain is manageable – i’m like the chillest, generally happiest person you’ve met that day.

The GP – a dude who I really respect & admire – made me feel like *proper* shit by shaming me like that (again esp when I didn’t bring it up!). I carry the shame around with me all the time. It weighs me down, and the dirty secret of mine.  I don’t need to hear to suck it up from someone who is supposed to at least be pretending to help.  So I was like, what’s even the point, right?  And It’s not the 1st time he’s shamed me. I can’t blame him directly tho. Healthcare is historically built upon shaming women (Especially) .

I’ve been making my medical shames into comics (this 1 isn’t finished yet). Maybe one day, i’ll give them to my GP.

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So what’s this shame gotta do with everything else? Well, this is the thing. I know that shame is the opposite of art.

When you live inside of your shame, everything you see is inadequate and embarrassing. The pain you can’t seem to get rid of.  A lifetime of traveling and having adventures and not being tethered to long-term commitments looks empty and pathetic and foolish, through the lens of shame. You haven’t found a partner. Your face is aging. Your body will only grow weaker. Your mind is less elastic. Your time is running out. Shame turns every emotion into the manifestation of some personality flaw, every casual choice into a giant mistake, every small blunder into a moral failure. Shame means that you’re damned and you’ve accomplished nothing and it’s all downhill from here.

Working in art and academia/research kind of makes it super easy to fall into shame. The way these worlds work – defaultly – can make you feel pretty inadequate at times. I mean, anyone who has received the raft of reviewer #2 will know what I mean.

Shame creates these imaginary worlds inside our heads. This haunted house that I have created is forged from my shame. No one else can see it, I keep trying to describe it to them. I find ways to say, “You don’t want any part of this mess. I’m mediocre, stupid/boring, and poor. Do yourself a favour and leave me behind.” Sometimes I think it’s because I want to be left behind, though. That way, no one bears witness to what I’ve become.

I’ve gotten super lucky recently though when it has come to work, somehow. I’ve been blessed with an incredible opportunity to do a commission for Yorkshire Visual Arts Network (YVAN) – on creating a work based on snapshots of working in Yorkshire and Humberside as an artist.   And I decided I’d look at this iffy word Resilience.  It absolutely does my head-in, does that word.  It’s a new buzzword. And it gets banged around in scenarios where people are in really stressful situations: an overstretched NHS, an underfunded school, understaffed university, a over-stretched and increasing demand public sector. The reasons why people are stressed & burnt out & things are taking longer *isn’t* the underfunding – no – people just need to be *more* resilent. Here this is the placing the structural injustices onto individuals – and it turn it shames them too.

The North, traditionally and currently, gets less funding than the south. But – it’s cool because WE ARE RESILIENT.

Over the past few weeks I have been digging down deep across various areas: Sheffield, Doncaster – soon Hull and Withernsea. A bit of Huddersfield. I’ve been taking documentation, talking to people. About labour, about art, about making, about worth/value/time.

But I am left more inspired than I first thought I would be.  Every single conversation has ended up about being and providing some sort of care. I am refreshed. This wasn’t what I was expecting to find. I had chosen these specific people because I knew they were doing something special, and was responding to these structures that build shame around us all. They are responding with a resilence built around care.

Over the past few decades the individual, the self, has been at the center. But I’m finding people who are leading us toward a culture that puts relationships at the center. They ask us to measure our lives by the quality of our attachments, to see that life is a qualitative endeavor, not a quantitative one. They ask us to see others at their full depths, and not just as a stereotype, and to have the courage to lead with vulnerability. These  people are leading us into a new culture. Culture change happens when a small group of people find a better way to live and the rest of us should copy them.

I am excited to share this new body of work (still in the process of being made) with you – but the website will be shared with y’all soon.

All of this has made me see that we all need to discard some of this shame that we’re carrying around all the time. But even if we can’t cast off all our shame that quickly, through the lens of art, shame can become valuable.

When you’re curious about your shame instead of afraid of it, you can see the true texture of the day and the richness of the moment, with all of its flaws. You can run your hands along your own self-defeating edges until you get a splinter, and you can pull the splinter out and stare at it and consider it. When you face your shame with an open heart, you’re on a path to art, on a path to finding joy and misery and fear and hope in the folds of your day.

Instead of thinking what needs fixing? we need to be here instead. We can build a new kind of existence, one that feels small and flawed and honest, but each day we can accumulate a kind of treasure that doesn’t disappear.  A reminder that you are alive. And you’re worthy and valued and seen. Chronic pain, citations, published journal articles, bad reviews and all.

A New Way. Can You Help Some People Who Mean Alot To The World, and To Me?

Throughout our lives, we will come to find ourselves in a lot of different places.

A lot of different rooms.
A lot of different corners.
A lot of different wheres.

Those wheres will be unexpected. They will surprise us, scare us, change everything, change nothing, and break our hearts.

I’ve found myself in some pretty amazing wheres, and some pretty devastating places. But one of the constants was having the opportunity to be part of Postmasters Gallery, and to continue to feel like I am part of their huge art family.

And that’s why I am asking you to be a Patron and help support them to keep making the artworld more radical, more daring and the world a better place to be – for us all. 

Furthermore, outside of art, The Postmasters Family helped save my life… and helped me get back onto the path of trying to live my life.  See Postmasters aren’t just a normal gallery. They’re everything and more. They’re community, they’re bravery, they’re hope, they’re protest, they’re US.

Let me tell you how, and just how their Patron rewards will LITERALLY MAKE A DIFFERENCE to YOU if you invest.

In 2008, I got to chance of a lifetime. I had decided the previous summer (2007), whilst working with steadfast ambitious & economically supported college-aged Americans, that I needed to catch up with my life and career ambitions. And my career ambitions was to be an artist and to live and work in NYC. Preferably in a gallery. This was no small-feat for an under confident, working class kid from Doncaster, UK (DONX!).

I worked at a bookies and at a toy-shop part-time during term-time,  whilst praying to the art gods that I’d get my artworld NYC summer. I did anything to make sure I could afford to go.

I remember exactly where I was when Magda of Postmasters Gallery said she’d meet me in person with the chance of getting to be Postmasters’ intern the summer of 2008. I was sat with my friend James Cotton in the Graphic Design-Apple suite at the old art campus. It was a super sunny day for the winter and the sun was blinding through the large windows. I just-re-read that same email, over & over again. I still have it archived even though I no longer have that email address (at hotmail.com?!).

I remember being incredibly nervous. I think I was practically mute for the first 2 weeks of being at Postmasters. But I learned so much.

I learnt around 26 years of Postmasters Show history, and art history in the making, as I was set to digitalizing their whole archive. Endless slides to be scanned, and amazing write-ups of artists in ArtForum, NYT, Art In America, et al – of still practicing, artists who have since disappeared, but a theme emerged.

These shows were often groundbreaking, urgent, courageous, some genuinely funny, ahead of the curves. New Media Art shows before new media art was accepted as it is today (though we still have ways to go with this medium). Women artists equally represented, and mostly – it still felt contemporary, and alive and represented the values that Magda and Tamas have sought to bring to the artworld their whole life.

I also learnt how to send invoices via fax (though still not into faxing), I met some of the coolest artists who continue to inspire my practice today, about art museums collections & how they buy art for them, at one point – I was left manning the whole establishment for a week?! and I learnt loads from Magda and Paulina’s experiences and ideas.

I was properly schooled that summer I was at Postmasters. I remember leaving after my last shift and I walked down to 9th Ave, and had to search for a working pay-phone to call my mom because I felt so sad I was leaving this amazing thing I had sort of been apart of for a short time.  I left that summer with my heart heavy but inspired.

I got back to the U.K. and art school felt kind of boring after that experience. I had to do something. Magda taught me that literally, anything is possible, even starting from scratch, along as you have perseverance, some people and community who can support you.

So my friends and I started our own lil’ artspace called CAKE (rebranded CAKE Everyone). We were a small space above a bar on West Street, Sheffield, UK. We lasted around 2 years and we learnt loads and had so much fun. But the thing is, I took everything I had learnt from Magda & Postmasters, and I put it into action in Sheffield – and invested it back into our local community.

I am still employing these lessons from this time into my life and practice.

Now, it would be easy to say – I became, like, an awesome artist, or got lots of gallery jobs… but because i’m not very smart or that talented, that didn’t really happen (and that’s ok!). But the year after I graduated was HARD. I nearly lost my own belief. But Magda offered hope and advise on the end of emails. That really helped me push through what I thought was a dark time…

Then things started to work out… I got a residency at SITE Gallery, I was working freelance as an illustrator, doing some university lecturing… I came over to work a summer in Boston/New Hampshire in the U.S.A.  but I had been feeling poorly for a good few months before I went… tired beyond belief, coughing up blood, endless nosebleeds, bone-pain, flu-like symptoms, drenching nightsweats.

And on the 21st August, everything changed. I found myself sitting in front an oncologist at General Mass Hospital. With my YMCA boss, 3,000 miles away from home. The doctor cleared his throat a few times and told me it looked like Lymphoma… Cancer. He told me, if it was time-sensitive and I didn’t get it sorted then I would die.

Well. As you can imagine, that wasn’t the news that I was expecting. I didn’t tell my mom for weeks (I was only 24). I felt ashamed, I don’t even know why. I thought it couldn’t be true. I googled the odds every-single-day. My boss kept telling me I needed to go home. The only person who I decided to tell who I didn’t work with — was Magda.

Because Magda was a person I knew I could trust, and always has a no bullshit take on everything but has an aabundance of empathy too.

After a crazy 32 U.S.A. state roadtrip (yolo!) Magda & Tamas put me up at their place, Magda cooked me an amazing breakfast before I left the USA for unknowns at home, not knowing whether I’d make it back again.

But the story is more complicated.

Magda nearly saw me go under. A few times.

I just had no energy. I laid in bed. Feeling sorry for myself. I was in pain. I was really sick. I couldn’t even watch Netflix. But Magda & Paulina would send reassuring tweets and emails and I slowly kept it together.

I worked harder at building my art-practice than on anything in my life, though it never felt like work. I devoted myself to it, though it never felt like sacrifice.  I am also endlessly grateful. Those years gifted me experiences, skills, lessons, and friendships. I would not be me without them.

Many forget that it’s a rare privilege to find something you care about so deeply and be able to make it your life.

I had struggled to get back, but my heart wasn’t in it in the same way.  I simply craved a new challenge. It didn’t matter why — I couldn’t lead  my life in the same way, and I had promised myself that I wouldn’t be caught without a plan if something happened to me again.

I realized I couldn’t have my old life back, but I also didn’t want it anymore.

So I decided to go into healthcare… radiotherapy & oncology! Of all things. But I’d kept all this secret from most people. It was furtive, shadowy work, and the secrets made my stomach ache.

 

But I reached out to M, and I hoped that she would still think I was an okay person.

The wild thing is, Magda still helped me through emails – giving me incredible advise and inspiration for my healthcare practice. To the point that I realized that I was still a fucking artist. I had got lost, but she never stopped helping me find the tracks back. I’m now doing my PhD combining all of my double agent status’ together. Just insane.

But here’s the thing about the Postmasters Fam., is that they don’t let you down.

Magda once said to me that we get dealt the cards that we get dealt, but we play them like they’re fucking Aces.  She has taught me that experience is subjective. We get to decide what’s devastating, what’s beautiful, and what we do next. In the books of our lives, we are both protagonist and narrator. And narrators have incredible power.

In writing this, I thought a lot about the places that shape us, and how, in turn, we shape those places in our minds. Postmasters have really shaped my life, in so many ways.

As human beings living on earth right now, we find ourselves in a very particular where.  The art-world mostly sucks, because it works for the 1%, lets not even talk about politics.

But this is something we can all help, maintain, and be a part of. Help sustain the legacy, help to make the future, help to secure a better history. Look down at your feet and decide what that means.

Instead of being afraid, I’m going to try to be brave. Instead of feeling regret, I’m going to focus on getting better tomorrow, and instead of hoping that someone else will say it or move it or mean it, I’m going to do it myself.

Postmasters has been there for us (in ways you might not even know yet!) so lets me THERE FOR THEM!

And as I’ve just shown you, the $100 or $500 a month reward will LITERALLY CHANGE YOUR LIFE. I can’t stress enough how much its worth it.

Let’s make art, and friends, and purpose, and be good to each other. And please spread the word!

If you got this far – Thanks!

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Expect anything worthwhile to take a lot of time

Yesterday I went to the Drawing Matters Symposium in York. It was a day of inspiring talks and presentations, all grappling with drawing and its pros and cons. I even met a couple of healthcare professionals (a nurse & a physio) using drawing in their PHDs – as a critical tool too, not just a “wellbeing” tool*

There was a particularly interesting talk from an educator about drawings role in primary education, and how a lack of teachers understanding of drawing and time to do it/teach it (all documented in Ofsted reviews every 3 years) is affecting how people later on in life construct and evaluate knowledge. This then, of course, systemically affects every area we work in – from government policies, to leadership, to how things are designed.

They also showed how drawing also helps bilingual kids learn english. So drawing can help bridge across two different languages, two different paradigms. Enhance collaboration and share practices!

But the knowledge thing got me thinking about the healthcare system.

I’ve been trying to make things to help showcase people’s work within radiotherapy & beyond and I’ve been *secretly* developing  a framework/workshops to teach healthcare students (maybe even staff) to be and think creatively.
The workshops are designed to be facilitate hands-on activities and discussion designed to build 4 essential creative muscles:

  1. Seeing connections between disparate concepts
  2. Developing an openness to new ideas
  3. Building resilience through experimentation
  4. Authentic reflection

These 4 things goes beyond what most people think of when we say creativity (no, it’s not just drawing, and it’s not just being “different”). In business, the creative mindset is highly sought-after because in this time of incredible uncertainty and rapid change, we need agile thinkers who can recognize patterns and interesting adjacencies, who naturally come up with person centred solutions not rigid-1-fits all master plans, and who are comfortable conducting rapid experiments to learn quickly. But it’s not as much appreciated  in healthcare, despite needing the same kind of things as described above.

But alas,  both healthcare and creativity is complicated.

For years, researchers have studied the “bias against creativity” in the workplace. University of Pennsylvania researchers coined this phrase for the tendency of creative ideas – and the people who espouse them – to be systematically diminished, disparaged, and discredited. This is interesting stuff. I’ve personally experienced it at school, across many places I’ve worked, including within the healthcare system too.

In recent work from Stanford Institute for Economic Policy Research, economists took a novel approach to innovation research by matching tax data to patent grants and applications for almost two decades in the US. They found that children of parents in the top 1% of the income distribution were “ten times more likely to become inventors than those in the bottom 50%.” This is significant, but perhaps not that surprising. The fact that you’re more likely to be successful if your parents have money isn’t the classical narrative of the American dream, but we know it’s true. This data is reproduced across the UK too.

The real surprise in the research was that invention was not correlated with creative ability. Instead, the degree of successful invention was more closely tied to environmental factors shaped by race, class and gender. The conditions children were exposed to at a young age in their neighborhoods and schools were the dominant factor in predicting future success in innovation. In other words, if children didn’t see members of their family or community engaging in non-traditional, innovative pursuits, the financial barriers related to access to opportunity were virtually impossible to beat. It didn’t matter how naturally talented someone was if they had nothing to model.

This makes me think back to the healthcare system and the transformational leadership role and HCP ability to enact change – whatever band/level/experience they have.

“Creativity” may not be the magic bullet – but creative people are. We know that intentionally or not, we are teaching the next generation how to be good foot soldiers, but not independent thinkers. More confoundingly, we know that the things we design (whether policies, products, systems, services, pathways, leaflets, etc) we will use in the future to communicate and convene, work and drive and govern will be built by a cosseted minority who have great access, but may not have the greatest ideas. And even if they do, they will not represent the diversity that they could have.

The experience of engaging in the creative process is profoundly transformative for people, especially young people. Moreover, it’s something where each of us can have outsized impact, just by simply being present.

So how do we do this?

First step: embed it back into education and learning.

Organization design – the attempt to structure systems to produce the outcomes we want – has been an established field for decades and healthcare is an amazing example of this. But here’s the thing – if you step back a bit, putting the two words “organization” and “design” next to each other is actually quite contradictory — the historical rigidity of a typical organization, next to the inherent complexity of the humans in that system, combined with the fluidity of design.

The healthcare paradigm is a tricky thing to navigate. It’s so ensteeped and rigid in empirical  data and conservative methods that it’s hard to move things. Each coupling reveals a tension between chaos and structure; linearity and the non-linear; closed and open systems.  Teaching people to be flexible and open – and fun – will show them their potential and feel more confident is being more critical and open about their world and collaboration around them.

Step 2: We need to Challenge the world around us.

At the 99U Conference, Liz Jackson, founder of the Inclusive Fashion + Design Collective said: “You never see a person on a cycling sign. You see one on a wheelchair sign. You’re saying you can’t use that object unless you are that person,” as she strode the stage with the aid of a cane. “We are disabled not by our bodies but by the world around us. It is a social construct. Disability is nothing more than a brand, the world’s ugliest brand.”

The stuff we ignore, or don’t try and change, creates our world – makes it harder for us to do our jobs, our lives and our patients lives. So by giving people the tools to critically think, to be open, to try stuff, we can literally make a difference. Equally, to repress what makes us unique is to artificially constrain all the potential we have to offer. 

Step 3: Learning different ways of thinking to see from different perspectives

This is where a creative education works. Sometimes we all need to step back—be an artist or a healthcare manager— to find the most appropriate methods or  solutions for the problems. You don’t have to do everything yourself, and it doesn’t always have to be a questionnaire or RCT.   Equally, we need to  increase awareness of our biases (which we have MANY in healthcare) and begin to advocate for change, Norregaard recommends creating a space with your team where it’s okay to talk through our biases.

Step 4: Believe in the learning loop.

We teach reflection well in healthcare, but I’d argue not in a way that’s super conducive to working life and transformation. We know that hospital Trusts that are transparent and have an open culture to mistakes, make less big mistakes overall, and have higher quality care outcomes. This isn’t by mistake. Reflecting upon what you do, enables you to work out where things can be better. But the trick is about making reflection natural, critical, authentic – actually empowering and enjoyable and  not like a chore, it’s tick box excerise for just your license. Creative thinking does this.

 

However, even with all of this – we know culture doesn’t change over night and there will always be people high-up that can not see the benefit in such things. Expect anything worthwhile to take a lot of time, but in the meantime – the artist in me has taught me that if you don’t or can’t get a seat at the table – just bring a folding chair.

Having ideals is like having a compass that always points to your heart instead of your brain. If anybody wants to keep creating they have to be about change. Likewise, if anybody wants to be about change, they need to create.

 

 

(*side note: I believe the arts are incredibly important in theraputics however that’s a whole different debate). 

we are the difference in the world

Tomorrow, I leave to go to Krakow, Poland with my bro & his girlfriend. It will be my 2nd time there. I can’t wait to eat more proper Polish food!

But I won’t be here in the UK for the last bit of the General Election campaign. I’ve spent a good few weeks knocking on doors, writing much too long facebook posts trying to debunk Tory lies and records for people, endless retweets, lots of leaflet posting. So, I’m both REALLY REALLY nervous for 8th June, but i’m also welcoming this social media break – where things can become a bit more distant.

So I write this post here, to ask you to consider helping Labour, or voting them in 8th June.

Last Monday, I was invited to the Houses of Lords reception to give a small speech. I was invited by Lord Professor Robert Winston, for Sheffield Hallam University – to talk about the “Hallam Difference” and what I think this is, and what it has meant for me.  (File this under UNBELIEVABLE SMIZZ MOMENTS)

I talked about my challenging upbringing  in poverty, that ended up including fleeing from domestic violence and homelessness. It included the low self-esteem I had ( & still have to be honest), the crushing imposter syndrome, the failing school *at the time* I came from to get to university, how I was the very first person in my family (& still am) to finish school and then go onto university and then later on after everything started going well, falling poorly and everything getting messed up again.

But within this was support networks that stopped me from falling into real despair, or getting lost in the cracks in the system. Hallam has outreach teams who worked with me to get to a university, a Labour government at the time had funded 1oo’s of policies and projects that stopped my life from being increasingly worse – such as Aim Higher, EMA, Sure Start Centres — all helped me stay on at school. Policies that helped my mom financially, a few more council houses that we don’t have at the moment (though it was bad then too). Maintenance grants so I didn’t end up in MASSive amounts of debt from university.

And once I got to university – the people made it everything. Hallam gave me the environment and the belief to build my confidence, to make friends for life; it made me feel seen / heard for the first time in my life. I felt like… I kind of… fitted in…. I was able to see a future for myself for the very first time in my life. Rather than just living day to day.

I was able to fulfil my whole life’s dream of being an artist and working in NYC in an amazing gallery, no less, with truly amazing people who became my mentors & inspire me to be better – and work with families of all kinds in Boston, doing art stuff – and when I fell sick, they paid for all of my medical bills when I was over there. Literally, they all came together to help to save my life.

When I came home, and I was angry at myself for becoming sick… for becoming broken… and not knowing how I could stop it, I just couldn’t figure out how to fix myself… my life had to be changed to adapt what was & contines to happen to me – and I was NOT happy about it. This jarring experience was eased when I met incredible NHS staff who helped me feel heard and understood in a way that really touched me. I can’t put into words how compassion makes you feel when you’re at your most vulnerable.  And I realized I wanted to take all of these experiences, use my own skills, and give back that time and kindness to the NHS and its future.

And Hallam was there for me again.

I got to tell a whole room of important people  at the Houses of Lords – people who can make a difference – how hard it is to get to university from precarious backgrounds. And just how my life has been transformed by these experiences.

I wasn’t sure how it was going to be recieved, but afterwards loads of  people came over to meet me,  and would share their stories of humble beginnings too. Which showed me there’s power in vulnerability sometimes.

But Why do I tell you all this? And what’s it got to do with voting and how we cast the vote?

Well, I’ve learnt that too often the world celebrates good heart without acknowledging the pain and hurt that shaped a person and their direction. Life may throw a thousand harsh storms your way but sometimes (not always) we can use them to grow and be better and be more good from it all.

You will be lost and unlost. Believe in your craft. Believe in your heart. Believe in your ability to become whatever it is you want to be and to overcome these challenges that lay ahead for us.

But we need OPPORTUNITY to help us to get there. we need support, we need networks, we need friends, we need hope to keep going – we need to be seen, and *really* heard.

And I genuinely believe that this Labour Government can DO IT for us. A lot of people are merely existing in the shadows. When I go convassing, some people say they’re not listened too – but here I am. Here is Corbyn – with a really truly compassionate (& costed) manifesto that really, really looks and understands some of the issues and problems and solutions to a myraid of issues within contemporary society and in all of our lives.

As my friend said tonight, watching Manchester Live makes me wonder at what point our counter-terrorism strategy finally evolves to include a massive investment in culture and the arts…

The Hallam Difference is a domino affect. Every act of kindness, I try (though sometimes I’m accidentally a dick) to pay forward. Every little action is big when we come together. Keep pouring your beautiful minds and hearts into what is right.

This week is a good week to flaunt your awesome. To show the world we’re compassionate, that we believe in people and not corporations.

That we are the difference in the world.

I will be watching the election progress from Poland at night, and I’ll arrive back to England to Exit Poll news. Let’s hope it’s better than 2015 – though as Ed Miliband said to me on the phone yesterday, “It’s the hope that really crushes you”.

I can’t cry again about another General Election outcome.

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How change happens: One person. One moment at a time: Surprises from doing some Labour Canvassing.

It’s been months since I last wrote a post. Mostly because I’ve been sick, and mostly because PhD work, man. It’s never ending.

But the uncertainties that lie ahead for me, are bigger than ever for us as a country with the snap General Election in motion.

In 2015, you might remember me being super pro-Labour, super-dooper pro Ed Miliband for Labour Leader. I posted loads online, but I was deep in my radiotherapy & oncology studies. I was working every hour sent on clinical placement, and then on academic work & freelance stuff just to try and make ends meet because the NHS Bursary wasn’t ever enough to live-off anyways.

I didn’t go out and canvas or post leaflets, I didn’t have the time. But I didn’t even think we needed to do it anyways. So I just retweeted support. I had a proper echo chamber around me (though I learnt I had many Tory & UKIP voting friends… ), that I felt like the winds changed in our favour towards the end of the election campaign. I went to my polling station to vote – and saw people there voting for the first time in years.  I assumed they’d all be for Labour – because, why not? It was an obvious choice. I felt like Ed could actually win this thing.

Then the results started to come in that night.  I laid in bed, watching some sort of tragic accident,  Snap-chatting friends – our sad faces, willing that it will change, it’s only 1am anyways? I went to sleep as I had an event to draw the next day wicked early.

I woke up at 6:30am to “sorry smizz” texts from friends who knew I was really passionate about it all, & saw on the TV the Tory Majority result. I just starred it out. My mom came upstairs and tried to take the mess out of me (we’re always winding each other up) by saying, “HA! Labour lost…”

And something came over me. I’ve never had this reaction to anything like this before. But I got chocked up. I stuttered that, “You don’t know what’s going to happen… PEOPLE ARE GOING TO DIE.”

We stared each other out, shocked at my uncharacteristic emotional outburst to – an election of all things. My mom immediately knew this was not something to laugh about. She tried to comfort me by saying it “probably won’t affect us…” But I knew it would, and that wasn’t the point. What about the people it would REALLY affect, badly?

But I was right. People have been, and ARE DYING because of this Tory government.

Our Death rates in 2015 reached their highest level for five years. https://www.theguardian.com/society/2017/feb/17/health-cuts-most-likely-cause-major-rise-mortality-study-claims?CMP=Share_iOSApp_Other 

Millions of more children are now living in poverty (despite David Cameron changing the definition of Poverty to hide the even more 1000’s of kids in poverty from statistics)  https://www.jrf.org.uk/press/ifs-poverty-forecasts-budget-needs-support-families

Social Inequality is one of the biggest causes of disease and under-productivity. It poisons our communities and changes peoples lives, forever, mostly for the worst.  Over the past 6 years, I’ve seen young peoples futures get smaller & smaller, a united kingdom now fighting within itself into a more divided nation. A rhetoric that is neither good for EU leavers or remain believers. I’ve felt the difference 6 years of Tory ideology has made on the NHS, from both a staff member and a patient, and I know that it’ll get worse if the Tories stay in power.

I’ve been burnt by too many election outcomes over the past few years: 2015 GE, EU Referendum & USA’s presidential election… but i decided that maybe it hurt so much, because I hadn’t done *anything* to help change these outcomes?

I realized that I couldn’t just sit and share and write think-pieces about these policies and about why voting Labour is important, again. So when Ed Miliband emailed all the Labour Party members in the area, I knew I wanted to help and I emailed back.

I originally just thought I’d hand out some leaflets. I could do it when it suited me,  work it around work, and I wouldn’t have to talk to anyone.  Because if anyone who knows me, knows, I get proper socially inept asking strangers stuff & especially calling people up on the phone.

But Ed called up, and we chatted & he sort of encouraged me to come along to a canvassing event. And to be honest, I thought it was going to be wicked hard but the team was amazing and kind. They let me shadow them until I felt like I could do it alone.

The groups of people that come together to canvas cover all kinds of backgrounds and ages of people – from young to old! All super interesting, smart, funny and kind, with incredible stories of their own. I’ve met some great people on the trail, even catching a drink and becoming Facebook friends with them.

I’m still nervous every time I go out and do it, but it’s kind of exhilarating! And feels fun. Even when you do it in the rain.  I’ve learnt about how we do canvasing, using data, and how we develop it forward. It’s fascinating stuff to see it play out on a local level, as well as national level. I feel like I’ve also gained and developed some skills, which I know I can take to different parts of the multiple jobs and roles I do in real life.

But the most rewarding part – is getting to know your own community. I’ve lived in Woodlands pretty much all of my life, and when I was handing out leaflets — I had to google map where some roads where!

It reminds me a bit of my clinical work, where you’d do a first day chat with a patient about their treatment.  It’s these opportunities that allow my patients get to offload their concerns and worries, or ask questions. And it’s often the first time they feel like they can ask a HCP these things before, or that they’ll be listened too. And it helps enable them to have a better care experience.

Canvassing is a bit like this, sometimes you get someone who has just been waiting to tell someone who will listen their issues. And in listening, and being kind, some of the work is already done for you. Its therapeutic for them (after all, most people just want to be heard), and you can help to signpost them in the right way. That just feels really rewarding, but it’s also hard – just like clinical work – hearing people’s stories of suffering and wanting to do the very best for them – but they’ve got to be part of that equation/solution too.

It’s also how Obama was able to win vital seats in 2008, because of people knocking on other peoples doors. I don’t think we can underestimate the power of listening and hearing in real life.

I’ve now mailed, 100’s and 100’s of leaflets and letters. And whilst I do it, people washing their cars and walking dogs, and kids on bikes will ask questions, and everyone is really friendly.  It feels good to be part of this community in a way I’ve never seen before.

Additionally, I’ve proper increased my steps – which is a pro for a job where I’m sat down reading, drawing, writing and interviewing mostly. So going canvassing is good for general health & fitness too! What a winner? 😉

Over all, nationally, it’s hard to work against our rabid right-wing mainstream media. Journalists are meant to function like fire alarms, as in, it’s better to go off even if it’s just a candle. Whereas a lot of our publications make millions every year, & often not pay tax, to tell people the smoke they’re smelling isn’t smoke.

If that transparency and accountability is lacking, it’s our role to help people get the right information. And I feel like, regardless of the outcome, we’ve been part of something special and urgent.

There’s still a few weeks left of the campaign trail – I would urge anyone who is thinking about it – to get in touch with their local Labour Party (or whatever party) & get involved. Even if it’s just 1 afternoon (I’ve only done 6 canvassing events & a bunch of leaflet dropping) but it feels good to be part of something bigger than myself.

As Margaret Mead, an American cultural anthropologist, said:  “Never doubt that a small group of thoughtful, committed, citizens can change the world. Indeed, it is the only thing that ever has.”  

And i think that sums it all up nicely.

Whatever happens after the GE, I feel even more encouraged to help more at local levels too. What an experience to have.

*Hope you guys will Vote Labour to save our NHS, schools, workers rights, the internet, democracy and even more that’s at stake in this election.*

Shout out to Ed Miliband and his team, and Doncaster councillors and other canvassers who are awesome.

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(In)Visibility and Art [& suffering]

Today, after 9-10 days of a horrific infection, I found myself feeling human enough to do some actual work. We’re organizing a conference about art and visibility, my PhD friends and I. More info coming soon! So I started writing the stuff we need to move forward today.

But what it made me think about was visibility within healthcare, and illness, and art.

I started thinking about Greenberg ( visibility of the aesthetics of experience), – and then about  the Cubists and other Post-Impressionists perspectives being  particularly poignant for illness and suffering.

But contemporarily, how  are we and can we understand someone else’s pain or convey our own to others? How do we make sense of the nonsensical, whether the chaos of life-as-lived or the inscrutability of dying? How do we answer the questions “Why me?” and “Why now?” when we are diagnosed with disease? How do we paint what we know is there but cannot see?  These are heavy questions which lie sullen at the bottom of every action within my PhD enquiry. Modern medicine, like much pre-Impressionistic art, tried to square this circle by instituting a technical and professional gaze that filters out the ephemera of the individual in order to identify and name what is hidden by opaque bodies (see, of course, Foucault 1994).

But this is not arts aim; it’s not a reductive attempt to discover the building blocks common to all landscapes or buildings or humans or musical instruments. It’s to uncover the essence of a thing, that particular thing, in order to reveal more.

Our representations of disease may actually conceal even as they seek to reveal. We know that socioeconomics and other social determinants (e.g., discrimination, exposure to violence, lack of education and social support, etc.) are tied to health and risk of illness and disease. We also know that socioeconomics and other social determinants affect prognosis and recovery. (Read Michael M’s The Health Gap for more of this)

Although the media love to highlight the enemy on our borders threatening to disrupt our safe worlds insulated from many of the realities of danger and suffering, it is actually our capacity for self-destruction that constitutes our greatest foe: poverty, poor nutrition, lack of access to care, neglect of mental illness, climate change, and war, both declared and undeclared. But far easier to wind up a distant epidemic and see a remote danger to ourselves (while thousands die in a distant place) than address our real threats. Despite many genuine humanitarian responses from wealthier “first-world” countries, it is still clear that we have primitive protective responses (at home and abroad) that largely ignore the real wolves at the door.

As the NHS looms on a crisis that was caused my a greedy, beaurocratic , irresponsible government, and Brexit heightens tensions, and Donald Trump’s inauguration starts to truly loom ahead, I got thinking.

Thinking about  all of this, I wonder if art is our tool to help both recognize suffering but also help build bridges with communities we have trouble connecting with due to these issues.  If the digital world fosters isolation, what evokes empathy? Which of our personas do we believe in—our social media portraits or our reflections in the mirror? What are the consequences of a digitally-created society in the psyche of the global community? Art *can* cross boundaries, social class, geolocked nations. It exists in between physical, real and the social-digital world.  It links us through history, makes the other seem friendly, it can hold up a mirror when everything else seems shattered and untrue. Art explores the complicated yet timeless questions of influence, superficiality, and powerlessness.

When I was first an art-student, I remember finding and learning all about this activist art history. From Ad Reinhardt creating “communist” comics under a false name and being investigated by the FBI, to more direct examples such as the Gorilla Girls, and PAD-D groups. They made work with a political edge.  It was so exciting! I wondered about how awesome it would have been, to be growing up in such a polarized and politically difficult time and then being involved in such grassroots political activity and art being the tool, or the process.  Almost a license to get it out there and be archived for the future. But that same political drive, was also given to the artworld too – Gregory Scholette of PAD-D continues writing about art and political activism with his artwork representing his ideals and holding the artworld accountable for its Dark Matter, Reinhardt wrote lots of essays – as published in “Art as Art” with his disgust of the commercialization of art.

Of course, now I found myself, in a much different world than 8 years ago where hope resided, and people were less obvious and less aggressive with their hate. Where politically, things all felt relatively stable and fine. I have since lost my political art naivety that I had then, and I don’t feel the same excitement as I did when I first found it —- but what does remain is my gut feeling that art CAN make a difference, and my passion in the use of criticality esp within a political art canon. Art can be urgent and important and poignant.

I wonder about all of these experiences, and lessons. And I think – yeah, it’s our turn to make the invisible – visible. We are traumatized witnesses, some of us accomplices, groping about in the gap between passive outrage and mobilized action. We are both: perpetrators and victims, objects and subjects endlessly exchanging roles.

It’s our turn to show that mirror to those who can’t see a reflection. It’s our turn to help people practice empathy, to feel less powerless, to make people accountable, to stand up for what is right – and I think it’s about time the artworld got out of it’s comfort zone.

I’m not sure what that looks like for me.  Some artists are already doing it. But our Art is about changing the world, rather than study how it is. It’s not just about making things, but making things happen. There is much proof out there that our common community has not been relinquished.

Is art sufficient to the task of unpacking these contradictions that lie within our society – or should it complicate matters further? Such questions are unanswerable, but we shall see and we shall do.

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Love Is Love Is Love: Working To Make Things Better

Around 5 years ago, my life changed in a fatal kind of way. When I was in America, I was given a diagnosis that made feel like I was looking down a barrel of a gun and made me question everything in my life. This crazy plot twist, that wouldn’t have been out of place in a Tramedy, set off a bunch of things in my life. The past 4-ish years have been personally-health-awful, but yet through this difficult time this happened:

Last night I picked up my crazy amazing big prestigious award from the Houses of Commons, like some kind of rock-star. It was surreal, and I’ll probably never get another opportunity to experience something like it. But it was such an incredible evening and I met so many amazing, talented, smart, giving and generous people who work within healthcare,  specifically within radiography and oncology care. We should be so proud to have these people – and people not acknowledged working day in and out within the NHS just like them – and in our country.

It’s more than anyone could ask for and it’s an absolute rare privilege; To be recognized for trying your best to help others. I’ve never really been acknowledged before,  but I can’t help but feel heavy with gratitude to everyone who got me here, as thanked previously in many, many blog posts previously. Because this award is just representative of everyone who got me here.  There is no greater gift than being able to be part of something bigger than yourself, trying to make things better for others. And so the honour of being part of narrative alone is incredible.

Then I got home, back to the north, anxious about the U.S.A. Elections, fell asleep and awoke to Trump president-elect.

When I fell sick, I had so much angst because I felt like there was so much left to do and so much more love to give in life. I’d cry because I felt sorry for myself. And I felt ashamed even more for behaving that way, for being weak. But then on reflection I realized that the tears  flowed because they needed to. Because things were building up instead of me like a pressure cooker, and I wanted to keep moving forward.

I was crying because I wanted to live, because I was afraid of not being here.  And I was afraid of being forgotten.

So having gone through that, and 2015 UK General Election and Brexist Ref vote – I figured we need a hope-of sorts – a plan of sorts. Here’s what I’ve learnt from my few years living invisibly and wanting so bad to enjoy life again. And how Brexit, and Trump and a million refugees stuck around the world make you feel powerless and everything is lost. But

Trust me when I say this time is short & this life is both terrible & beautiful.

Resentment & anger are inevitable & sometimes are important, temporarily,  but it’s important to not take up residence in that place. I PROMISE you deserve better. Even if you voted Trump. You do deserve better.

I promise you there are people who will leave you in life, but that others will embrace you unconditionally in your brokenness.

So you go out & run fearlessly in the direction of love. You are never alone. Your tribe is out there. GO GET IT. And please keep laughing. Joy is salvation. In the darkest, lowest moments, being able to find something, anything to laugh about can save you.

We never stop. We never give up. We fight for each other and protect each other.

Living and giving kindness is the best revenge. 

The most creative challenge of our lives is learning how to approach our own inner darkness with curiosity, empathy, and friendliness.

And that’s where it’s all going to come together.

Sometimes in life, if you are very lucky, you find the grace in having it all blow up in your face.

Our jobs for the day (life): Tell the truth; Be kind & curious; Love all people with all your heart; Don’t put up with any bullshit. 

Love Is Love Is Love, we’ve had a bunch of set-back but that just means we’ve got a lot of work ahead of us but lets keep working to make things better – for ourselves and for those who are voiceless, victimised, invisible or who can’t say it for themselves. There is so much more that what unites us than what divides us.

Our work isn’t done, and we need each other and others less fortunate than us, who are REALLY struggling need us. So don’t wait to be called, because you’re already being beckoned.

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Taming the beast in a complex system

Last week I had my first medium-plus allergic reaction to Shellfish (I think). I didn’t even eat it, I just ate rice that had been cooked with it. The kicker is, I don’t even LIKE Shellfish.

Literally within an hour my face swelled up (not like Hitch style but pretty bad never the less) & my throat became ridiculously itchy & sore, and I became wheezy like when you have an asthma attack. Needless to say, i wasn’t best impressed with this new hyper-sensitive immune system of mine. I hadn’t been to see a doctor in literally months, and i was hoping to keep it that way. Damn.

I had to go to the urgent care center, where I was given steroids, more anti-histamines, and a GP appointment. My GP prescribed me my first EpiPen, and a referral to an immunologist.

Today I picked up my EpiPen. I’ve never seen one up close before.

My GP gave me strict instructions about how to use it, & that I can see the practice nurse to show me how, and that I should call an ambulance if i use it & that I’ll always have to carry it and anti-histamines with me for the rest of my life now “just incase”.

But what struck me was the design of it.

It’s really quite big! And I wonder how smaller people (kids etc) carry their EpiPens about if they don’t bring a backpack? Its design is a bit impractical. They’re reliable, sure. They’ll buy a patient who’s in the midst of a severe allergic reaction a few crucial minutes to make their way to the hospital.

But they’re also bulky. Their epinephrine solution isn’t particularly shelf-stable, and will easily degrade in temperatures that are too low or too high (too cold in a bag in the winter? too hot in a jeans pocket perhaps?) and its expiry date on mine is in about a years time. So not very long.

I had a quick google to see if there was other designs available. In America, there was 100s of news articles on the esculating price tag: apparently a pack of two EpiPens now lists for $608 in the USA. (I checked the cost for the NHS & it’s £23.99 for 1 single dose).

This revealed that there’s a design patent on it until 2025. One company owns the monopoly of the EpiPen. & because of this, the design flaws of it for the user, are the profit for company. If it’s too big to carry, you’re more likely to buy more (in the US anyways) to store in other places or for back-ups.

Accidental injections seem pretty common, and instructions are relatively simple, but, adrenaline is invariably used in highly stressful situations, in order to treat a severe allergic reaction. As the auto-injector was originally designed for use in the military, the users were well trained to manage in these circumstances and the user group generally consisted of healthy adult males. Nowadays the devices are given to people of all ages, and with children suffering more from anaphylaxis than any other age group, the device has to be appropriate for a wide range of user groups.

On the recent BBC Radio 4 programme Dr Boyle highlighted how having to respond to a stressful situation can affect the person administering the drug. In his trial, more than half of the intensively trained parents were unable to correctly operate the devices in an emergency.

He cited some of the common errors associated with auto-injectors: holding them the wrong way round, failing to remove the safety cap and not pressing hard enough. They also discussed how little research into the efficacy of the device has been done because studies can cause severe allergic reactions in test subjects, plus real life situations are likely to occur in public and not in clinical settings. All of these issues have resulted in little drive to improve the devices over the last 50 years, leaving key issues unaddressed. (1)

The very fact that the EpiPen has been dominant for so long makes it hard for challengers to come in with a radically different design.

So, what does all of this mean? Well… there’s a HUGE Challenge for someone to make a MASSIVE difference to 1,000’s & 1,000’s of people, but also challenging in being able to design everything that is needed into an EpiPen (engineering, plastics, drugs, function, deisgn, safety etc) that’s life-style-functional & more cost effective long-term (shelf-life etc).

It highlights that instead of trying to carve out a focused segment of healthcare or a specific specialty of design, we should be re-framing these conversations about healthcare improvement around a set of challenges.

No one person or one organization can take on the whole system, but collectively we can make significant, people-centered change happen. I wrote on my blog last night about ‘critical making‘ – If there is one element that is sorely lacking in healthcare, it’s the ability to prototype, to critically make.

It can seem like a beast of a system can healthcare: its big, complex, and delivering on one of the most complex industries. But I’m trying to keep practicing at staying awake and trying to be attentive to what is elusive, fantastic, contingent, different and barely there.

 

Who knew some Shellfish and an EpiPen  experience would be showing me and putting into practice that listening can tell you who you are. That paying attention can give us the change and the meaning that we so badly seek.

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(1) BBC Radio 4, Inside Health, Wed 7 October 2015http://www.bbc.co.uk/programmes/b06flmg7

other readings:
Adrenaline auto-injector advice for patients, UK Gov.ukhttps://www.gov.uk/…/adrenaline-auto-injector-advice-for-pa…

Adrenaline auto-injectors, European Medicines Agencyhttp://www.ema.europa.eu/ema/index.jsp…

How Mylan tried to keep Teva from selling a generic EpiPenhttps://www.statnews.com/…/2016/08/31/mylan-teva-generic-e…/

 

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Lasso The Moon

This week I was invited to #PatientsAsPartners16 event – It was organized in big part by Roz Davies – as part of Recovery Enterprises in Sheffield, NHS Confederation and Y & H Academic Health Science Network  & a bunch of other organizations and people.

Drawing events and workshops and conferences aren’t an unusual thing for me. It’s a huge part of my bread-and-butter. I  get to draw all kinda of things! From health & social-care, to technology, the government, to film, to education, to science, to social-media, to inspirational stories. You name it. I’ve had the opportunity to have a good draw of it. And in the 5 years of doing it, I’ve learnt a lot about subjects I never would have ever really thought about before. I’d love to, in the future, write a small book – based on all the things I’ve learnt as this “graphic facilitator”.

But  the ‘Patients as Partners’ event and working with Roz again reminded me of where this journey started for me. Back in 2012, I drew a  bunch of events for Roz and her colleagues at NHS England. It was all about trying to make the NHS more “people-powered”. We worked with patients and other service users like carers, ensuring they were part of the new design of PCTs turning into CCGs in march 2013. That the patient expertise and experience was central and a big part of helping local CCGs commission services that reflect the needs of their local community and patients.  That hopefully patients would be partners in this process, and not just an “involve a service user tick box” process.

And these “lay-members” and other patients relayed their experiences of having to navigate this fragmented system that just didn’t understand their needs – even though these needs represent the same needs of 1000’s more living with the same specific chronic medical conditions. And this misunderstanding, or even rejection of their needs, even though not done on  purpose or without care – was the start of a scaring and traumatic time for these people. But they didn’t give up.  They used their resilience to push forward new ideas, and new ways of working. Or setting things up to help others in similar positions. They learnt everything they could, they tried to redesign the system.

I had just started my medical journey at around the same time. And in the beginning it was fine, but the longer I was in this limbo position – the more I hated being a patient. I still hate it, probably even more. I feel judged, in not a good way. I feel ashamed – of myself for not being able to fix what’s happening, for not being stronger. I’m spoken to like I’m stupid. Healthcare professionals (worth noting not all of them, of course) say loaded sentences to me – try and blame things on me because I am “young and female” – seriously -. I feel bad for not fitting into the [healthcare] system (story of my life). I’m an issue, not an assest. I’m “complex in the way I present”. It’s so loaded.  I’m complex because I’m a human being and we are complex creatures, no?   Healthcare professionals can’t wait to discharge me – with no solutions or suggestions or even help. And I just think, my poor poor GP.

(I want to say that as noted in many posts that I have been shown incredible care & kindness by most HCPs and I think the NHS is phenomenal and has saved me in many ways – but that doesn’t mean there’s not issues or unkind words in the process)

And as someone who intrinsically makes connections across fields, knowledge, see how things are linked, no matter how big or small those connection are, who loves working with people, and coming up with creative ways – or trying new things/ways of seeing if something works. I find this whole process really rigid and foreign & I can’t understand why it’s like that? Because surely, people aren’t like this?!

And as a result of this old school way, I’m left completely alone. In constant pain – causing unnecessary health problems for future smizz as I try and figure out whether different things/medications/diets/ect will work. I’d be lying if this experience hasn’t made me Question the value and the worth of my own life. I’m often left feeling like I’m not even worth the time of the system because I’m complex and they’re not understanding how it has all affected me. Having to “live with it” without any direction, advice – or even hope – in what to do to help or move forward. It’s really, really hard.

Luckily, the struggle is my life. And I’m motivated by experience to try and make things better. And whilst I’d rather not have this pain and experiences, it makes me more empathetic to others struggles.

So, drawing all these events – where we’re trying to change culture, to redesign things so that actually we have care – not a just a stop and fix and go system – really resonated with me. And I thought if these people (patients) are using their experiences to make and design new things to compliment the system — then maybe I can use my own experience and my intuitive knowledge/creativity to be a better healthcare professional – and change the system that way. One -on One. Person by person. Making sure people feel listened to. Not judge anyone. And understand that sometimes it’s the really small things that make the biggest differences to someone, so not to just make assumptions. 3 years on, 7 weeks before I qualify, I try and make sure that no one leaves my care without knowing the support, plans and options for them going forward, and i always try and make sure they know that they can come back – – with questions, concerns, ideas. ect.

So that’s why I retrained. Due to hearing all these stories and seeing the virtue of human resilience. Not to back down, to help healthcare to become more than just instruction-based (practice, protocols) but also idea-based (critical thinking, envision ideas of others).

And the artist in me is integral to the process of helping to do this.  Patients as Partners discussed how we need to be more creative. We need to help people understand. We need to re-design new pathways, processes, community links, use peoples knowledge from lived experiences.  Nightingale showed that soldiers weren’t dying mainly on the battlefield, but instead they were dying in the hospitals due to the poor sanitary conditions there. Nightingale used this now famous diagram to influence hygiene practices in military hospitals, which resulted in lower mortality rates. The kind of design that Nightingale used can be thought of as, “Design to improve understandability.”  

For the past few years there’s been debate about healthcare reform. But for all the talk of funding and not being able to afford to do things, there’s a lot less talk about the stories and lives of the people who are the center:  patients and HCP.  And I believe art/design/creativity is going to help us bring the people, their knowledge, their experiences and co-produce things that matter and bring the people who matter to the center of it all (Although NHS does need WAY more funding, there’s no denying this ).

It’s hard to believe that 2012, doing the People Powered NHS and doing the Patient as Partners event in 2016 – of how much it has come together, of how much it has inspired my journey and thought process. And if that’s not proof that peoples stories can help change things and help us learn, help us to empathize, and grow – then I don’t know what is.

There remains a misconception that health is determined by health care. Through hoping to change things through art/design/creativity we can make cities healthier, we can involve the people who it affects, and learn from what helps/makes them worse, we can make people feel more empowered & valued, and in turn we can make people’s jobs feel more satisfied. And we will make the healthcare system more sustainable and caring in the process. And make society healthier and better in the long run.

It sounds all a bit grandiose but actually, after years of listening to people not giving up and showing how they’ve helped to change things locally and beyond through their lived experiences. It’s hard to ignore and not feel inspired. Hold onto ideas, esp when they’re considered risky. We can totally lasso the moon. I’m almost sure of it.

 

This is a great project that showcases the above: http://www.recoveryenterprises.co.uk/about/

Patients as Partners project will be written up into a report with recommendations.

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