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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Small changes

Time slows when the lights are fluorescent and the days are punctuated by the rounds of the medical staff.

My head of studies for my PhD is a woman who is internationally known for her creative-design- person-centred approaches to dementia care. She’s an Occupational Therapist, with a background in art psychotherapy, and a PhD in using Art & Design methods in enhancing care in care-homes.

So I was super stoked when she asked me to be part of 1 of her many projects (some paid work on top of PhD). She invited me to be part of a project where we will design a Dementia friendly eye clinic. In real life.

Yesterday we had a meeting with some service users (I hate this term); a carer and his wife who has dementia. We spoke about all of their experiences of the eye clinic, from everything from leaving home and parking all the way through to leaving at the end.

There were many flaws in their care, some avoidable, some just a mistake, some just part of the design flaw within the pathway.

What I discovered when we looked back at our notes was that the things we could make better for people with dementia – would actually make these things better for EVERYONE who uses the service. How crazy is that?

I remember a few years ago, I had some crazy neurological stuff going on and it really effected my eye sight – I’d get like flashes of white light in my vision and I lost some of my peripheral vision. I had to see the eye doctor a bunch of times.

It was crazy just how unusual and difficult it was to go through that pathway. Eye drops that sort of itched, and we’d all sit staring at a wall, packed in like a crowded bus down a dim dirty coloured cream corridor. You couldn’t see anything clearly, but there was loads of small text leaflets teasing you to try and read them on the walls.  Your eyes hurt from the light. When it was time for anyone to call you, you’d get up and not be able to see who and where they were calling you from. Then the actual examination of the eye is uncomfortable – you have to lean onto some medical equipment – and being small, my feet didn’t touch the floor, there’s no arms on the chair & you’r completely unsteady – and my neck hurt from stretching it out across a small table to sit my chin in the face of the eye doctor.

It felt undignified, and intimate and vulnerable and stupid all at the same time.

Once they made me sign to consent to something I couldn’t even read because of the eye drops.

And then when it’s all over, you leave – by feeling the walls around you – and trying to remember which way was out. When you finally make it back outside – the light is bright. But in an unfamiliar way – and navigating the world through blurred vision enhances a crazy headache of sorts.

That was my experience as a young-un. Someone who has pretty decent eye sight (or did).

Now imagine that experience for someone who struggles to convey pain, or issues. Who is confused? Who has learning difficulties, short-term memory loss. Who can’t read?! 

I can’t imagine how disorientating and how scary and uneasy it must be.

I’ve been missing my clinical aspect of being a radiotherapist recently.

I think it’s the team work and the patients I miss the most. So I’m really looking forward to being part of a team, working with patients and their families, in a clinical setting again – but this time my main aim will be to come up with & test & prototype cool, person-centered creative & critical solutions — whilst at the same time learning some cool new researcher skills. Mostly how to get something you make, and apply it and embed it into the system. This is a skill I am really missing.

From just 1 meeting, I’ve already paralleled some similarities  of things that could change within radiotherapy and the dementia care pathway — there’s just such a long way to go. But, I’m excited!

We already have 4 areas of focus, and ideas to prototype. It’s too early to share or know if they’re any good or useful. But I can’t wait to share with you guys our future work on this!

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Work Hard & Be Kind

My productivity clock is weird. I can’t do anything of great magnitude in the morning. In the mornings I can’t write good essays, I find it hard to read and interpret big data-sets or new complex ideas and theories, I can’t really code websites, I find it hard to hold a proper conversation for at least an 1.5 hours after I’ve gotten up. So I leave my admin tasks to the morning and I usually distract myself on twitter. I’ll attempt my work, but will probably have to re-write it later.

By the afternoon, I feel my cogs working more smoothly. I can read those research papers and books with the understanding they need and deserve, I can begin to stare at the word document with that paper I’m writing. I can draw much better – and can debate things until the cows come home.

By 5-8pm I hit another fatigue lull, but if I nap on the train home or on my sofa in the living-room, I wake up raring to go.

From 9pm – 2:30am these are my golden hours of productivity. I write everything I need to do, I notice ideas and complex issues I missed in papers during the day, I draw more in that time than I have done all day. I complete works, I come up with my bestest ideas – I learn so much new stuff in this time — I learnt how to code websites and phone apps deep in the night. I’ve started many of my projects at this time.

But it’s annoying. I want to be that well productive in the day – and ALL day.

It’s pretty exhausting at times, especially already trying to beat that fatigue that won’t shake off.

And I know I have so much to do. So how do I keep motivated as I do my PhD and all my other projects?

Over the winter holiday I read “Let My People Go Surfing” —  Chouinard’s story is of his values and what led him to start Patagonia (the best outdoors store, ever). The principles that drive his company are really his own and he is a reluctant businessman. His big focus is on quality, durability and doing more with less. He is a committed environmentalist and believes businesses should be responsible for the damage they do to the Earth. Refreshing.

Quotes I liked:
“Doing risk sport had taught me another important lesson: never exceed your limits. You push the envelope and you live for those moments when you’re right on the edge, but you don’t go over. You have to be true to yourself; you have to know your strengths and limitations and live within your means.”

&

“How you climb a mountain is more important than reaching the top.”

Before 2012, I worked so hard and made so many sacrifices, that when I thought it was all nearly over – I regretted the missing the really important things in my life. These quotes encapsulates some of the foundational lessons I learnt – or certainly felt – when I got sick, and my normal life was really hard to maintain for months and months. It drove me into the ground.

But surviving something like that, made me feel like I deserved to spend every day on vacation. But you can’t. You have to re-join the real world, and re establish yourself in some sort of way.

Now I need to be able to have a balance during this PhD. I’m finding it a bit hard. Some weeks I work insanely hard. Some weeks, I feel the guilt for not having achieved much. Maybe that’s a natural balance? But I think I’d prefer it to be more work consistent.

So in changing habits, and in hoping to sculpt something from my mess, and learning from Let My People Go Surfing values. I’m not going to spend any money on clothes, & unnecessary things like blankets and lights (which I seem to have a thing for!) I will only buy essentials such as food, and art/study stuff and train tickets – for a whole 6 MONTHS. Starting from tomorrow. This will help enable me to declutter my day, my procastination of online shopping when bored, from walking to shops and looking at stuff i don’t need. I want to begin to re-evaluate what I have.

And I need to write more.

I’ve journaled frequently in the 10 years. I  kept a streak doing it for 106 days in a row over last summer. Every single day I’d write, I’m glad I did. And yet, most days, I don’t.

And I almost never let anyone see my writing.

Multiple theorists emphasize the importance of failure. I know this, but I’m not practicing it.
In the past year, I labored over at least a dozen items I planned to post publicly. I published  only 1 or 2 good ones.
I sat down with Steven Pressfield’s The War of Art, and it drove the point home even more strongly:

Whatever work you fear most, it’s likely the most important for you to be doing.

I fear writing because I fear I have nothing to say. I fear letting you see my half-finished thoughts because I fear losing your respect and attention. Most of all, I fear wasting your time.
But I know it’ll sharpen my thinking; I know it will push me. I hope it will connect me with people who like to think about, talk about, or work on the things I’m interested in.
So I’ll do it.
I will, at least once every week or 2, post something (brief!) that’s unfinished, unready, and unworthy of your time.
Here goes…
To my mantra: Work Hard & Be Kind
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Nearly another year older: 29 things to do by next year.

Tomorrow, I turn another year older into my late 20’s.  Slowly, slowly edging ever more closer to 30. It’s crazy because I still feel 21 in my head. I still get I.D’d for booze at bars and if I’m really trying it on, I still get Teen cinema tickets at the local Odeon. 

But my life is that of an 18 year olds. I still rent, I don’t even own a wok (this is going to change), no kids,   no pension. I’m still a student, albeit I prefer researcher  now (PhD). Getting really sick in my 20’s kind of funked things up a bit. I lost time for making and meeting people and things. I lost money, and I spent a whole-lot of it when I got it — YOLOing or trying to find cures for my fatigue.

By societies standards, I’m not a success. But in my own standards (and I think this is what matters) I’m relatively happy with where I am right now.  I mean, I am alive. I get to travel, I get to do what I love every day. I get to try and make a difference. And my life is sweeter than it ever was before, because the stakes are higher. I feel time is like an old friend who helps me to see things with much more clarity. I have incredible friends & family who are there for me, every-step-of-the-way.    

As I missed New Years being sick, and as I enter the year of Copper on the periodic table: I feel like I aim to see things differently: 

glass: more sea, less broken 

music: more live, less elevator

dreams: more lucid, less fever

flies: more dragon, less horse

fires: more camp, less brush

roads: more country, less service

slides: more water, less land

light: more moon, less brake

letters: more love, less demand

sins: more carnal, less original.

Here’s 29 things I am going to do this year

1.) stare at the stars with the people I love.

When I fell sick, my first night of wide-eyed clarity was spent  staring at the milky-way on the ballfield on an island in New Hampshire. USA, thinking about all the things I haven’t done & might never get to do. Now when I look at the night sky. it shifts me back to that feeling, being part of the universe, but also grounds me. I feel the weight of time. It’s beautiful, and technically we’re just staring at the past. What better thing to share with people you love? Time travel.

2.)  make my own ice-cream

When I stayed with Tizzy & Tara in Washington DC in 2011, we drunkly came home & I really wanted some ice-cream. All they had was Lavendar and honey. I thought it would be gross – but I was SO wrong.  chomped it all and felt guilty. I’ve never been able to find this ice-cream, ever again, since. I will re-create it this year.

3.) go to the coast of italy and draw the towns from the sea.

4.) design my own typeface/font.

5.) straddle the International Date Line

6.) tell my mom I love her

7.) Play the piano 

8.) run

because who knows when you might not be able to

9.) go surfing

10.) write & perform a song

11.) grow some vegetables

easy vegetables to grow, like.

12.) get a real christmas tree at christmas

13.) go to Japan

this will be a testament, Japan’s been on the bucket list for years

14.) learn to cook more new dishes than i  have ever done before

15.) do something I’m afraid of doing

16.) ride my bike more

17.) live in a world that loves all people

we should all aim for this

18.) budget

lol

19.) have fun without technology  

20.) take nothing for granted 

21.) try and stop feeling like i’m running out of time

22.) take more 35mm film photos

23.) do more for charities and help people more

24.) People

The most important aspect of out lives are perhaps the people around us. My goal is to stay in touch with family and old friends, and to constantly strengthen the bridges built over time.

25.) finally update my damn website

26.) see more sunrises and sunsets

27.) remember that what matters most is how well you walk through the fire

28.) pay my bills & debts on time

lol

29.) laugh at the odds 

**(+ bonus which doesn’t need to be said but: 30.) Enjoy my PhD)**

Happy New Year friends

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Processed with VSCO with c2 preset

(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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Time & Vunerability

I have written a lot over the years, and especially in 2016, about fear and sickness, and the force for good that can come from being dealt a hand of crappy cards.

Over the past year and a bit, my right foot has been hurting. I put it down to standing on my tip-toes on clinical placement (too small to move patients- should really get the step out! – so my own fault), creating a planta facisa like thing. I had an injection which stopped the pain for like 2-3 months. I was happy. Glad it was just a normal thing, and nothing complex like I usually seem to rock up with at the doctors.

And then it started to seep slowly back. Every morning when I got out of bed, I could barely walk for the first few minutes. I ignored it. I was no longer on clinical practice, for months, and yet it was getting worse. But never mind, I was in America. I was sure it would go away soon. I never even really looked at my foot though, as I thought all I needed was another injection when I got back home to the UK.

Then when I was kayaking across the pacific ocean in Hawaii – my bad kayaking skills got Gemma and I hit by a massive surf wave as we nearly arrived at the shore of the beach. I don’t know what I hit my foot on, but when I did I got this soaring pain. I limped out of the kayak, holding my breath to try and take the edge off.  Days later when my foot felt no better, I inspected my foot – and noticed a medium sized mass in the center of my soul and up to my ankle . I thought about googling it – but I was in america… what good would that do? So I shrugged it off. And thought it was probably Kayaking swelling. I continued to limp across the West Coast and from Gatwick to home, and beyond.

My GP – always a believer in not doing something without proof said he’d rather not do anything until he knew what was wrong, referred me for a scan of my foot. It took a month for the letter with my appointment time on  – which was the night before my flight back to Boston/NYC for a week.  I went, had the scan and the radiographer told me there and then that there was something on it that I had to go back to the doctor straight away because “that’s what doctors do”. I was like, “is it a tear?” He was like – “maybe – or maybe fibromatosis.” I sat up and looked at the screen and instantly could see the deep shadow on my foot – that radiological training, yo. Since I was flying the next day, I decided to do what I do best – just ignore this pathology and go on as normal. The radiographer told me it was necessary to see the doctor asap, and that I shouldn’t go running at all. I arrived back home a week + later to an appointment to see a specialist.

I left, and of course, googled Fibromatosis and looked at scans of feet to compare what I had seen. I have come to the conclusion that it’s not much to worry about in the great scheme of things, but elements of concern remain never the less – like if it is this – how will I ever be pain free in my foot again?  And now every morning when I get up, is a reminder of this pathology existing in my foot as it hurts to walk.

I am forced to look upon myself, once again, with a harsh and urgent clarity.

In 2012 I was forced to become essentially aware of my mortality, and of what I wished and wanted for my life, however short it might be, priorities and omissions became strongly etched in a merciless light and what i had most regretted were my silences.  Of what had I ever been afraid of, and opportunities not taken?

I’m aware now that my visions of a future have been honed by the lessons of my limitations – such as the never ending fatigue & headache. But I think it’s really important to give an honest and vulnerable account of what it’s like to deal with our hardships, if we are indeed going to share them.

There was a BBC article recently saying being on social-media can make you sad – because a lot of people, often,  portray a life of sunshine and rainbows, myself included. Sharing celebrations but not their failures. Showing an easier path, perhaps. Or shining glory in the face of adversity, leaving you the viewer – feeling less of a person because in the same adversity you crumbled, whilst they stand up shining and strong. When in reality, both parties struggled and both are victorious in being able to work through the challenge at hand. It’s just curated in a different way. Now I’m not saying we shouldn’t share our celebrations – but isn’t it much richer when we know the losses and insights gained & gathered in that process? It’s often a 2 -way journey too. I know I wouldn’t be where I am without help.

I feel like I have been open  throughout the years of my experiences. But I do often not share my feelings fully. I often don’t really tell people what ‘s going on, or what I’m going through, or weird things that’s happening to my body because — well, you know the other person probably won’t know how to react, or when there’s no proper finishing line it’s hard, or you’re not really looking for sympathy.   But often when I do take a leap and share what’s happening, there’s a huge sense of relief. Like, almost that my pain has been validated because another person knows about it – so it therefore is way more real than it just existing in my body or in my situation.

Through time, I am slowly learning to live beyond fear by living through it, and in the process learning to turn the fury at my own limitations into some more creative energy.  Living a self-conscious life under the pressure of time is enough to leave a mark upon alot of my life’s decisions and actions.  And it doesn’t matter whether my death comes next week or in 30 years from now; this consciousness gives my life another breadth. It helps shape everything: from the ways I want to love, to my politics, to my work to the depth of my appreciation of living.

I would be lying if I did not also speak of loss. The lessons of 2016, and beyond, have provided myself with many (hard) lessons and questions.  Such as, how do I provide myself with the best physical and spiritual nourishment? How do I give voice to my quests so that others can take what they need from my experiences? How do my experiences fit into a larger tapestry of my work as a working-class woman working across multiple disciplines as an artist? And most of all, how do i fight the despair born out of my fear, and powerlessness — imposter syndrome — self doubt — my meaning(less) life — which is often my greatest internal enemy?

What I’m learning, and wanting to take forwards into 2017, is that battling despair does not mean closing my eyes to the enormity of the tasks of effecting change, nor ignoring the strength and the barbarity of the forces alighed against us.  This is important as we begin to sail uncharted and ferocious seas of many conflicts and unknowningness ahead- both politically and personally: and physically, philosophically and socially.

When I reflect through all of this, it is the concern and caring of all those in my life which have given me strength. We should share our experiences – all of them, the bad, good and ugly , (only if you want to share of course) and spread words that are meaningful to us. It is necessary to teach by living and speaking our truths which we believe and know beyond understanding. We have lived through all of this already, in silence, mostly.  But we can learn to work and speak when we are afraid in the same way we have learnt to speak and work when we are tired.

I want in 2017, for us to be brave, see beyond our fears – whatever they maybe – and to break our silences with kindness and compassion – for those around us, but also for ourselves. We can challenge hateful assumptions, we can begin to understand others fears, we can work together to try and bring small solutions to never-ending problems and crisis. But it will be because we became unified. Because we understand that essentially we are all fragile, and all human.

It will be a big task, because there are many silences to be broken. But I know that together we can do it.

So lets share our vulnerability, lets assess our fears and dreams, lets help each other up.

Don’t wait to be asked if you need help, because I’m already here and you’re already being beckoned.

In the depth of winter, I found there was, within me, an invincible summer.And that makes me happy. For it says that no matter how hard the world pushes against me, within me, there’s something stronger — something better, pushing right back.” — Albert Camus

 

Help Aleppo Smizz Print: Lets Be Kind Again

I’ve been watching the tragedy of Aleppo for months and months now. Slowly, and slowly getting more and more, and even more horrific. I never thought that in 2016 we would be looking at the world through fear like we are now – a world seemingly well connected, a whole history to show us how it will never pan-out well for either side. But here we are.

I read article after article about the genocide that is happening. And I feel incredibly powerless. I know we all have stuff going on in our lives – like trying to make one pay check make it to the end of the month, being sick or looking after a sick loved one, wondering if we’re going to have a job by the end of the year… etc. And these are no small-feats. But I sit and look around my room, at my mom and my dogs, I look at my Facebook messages with my bro, and i look at the christmas tree with it’s sparkling lights. I think how lucky we must be to not live in that kind of fear (or at least yet.. who knows what the future holds at the moment).

And I can’t just watch the world burn in horror without trying to do something. However my skillset is small. And my debts are massive. Since we raised around £1000 for Doncaster Detection Trust this year, I figured maybe another drawing could do the trick to help raise the money and the funding to get the help that the people of Aleppo so desperately need.

So here’s my first print. They are all limited edition of 100, signed.

A4 in size, printed in matt. On heavy 220gm paper.

They will be posted to you after christmas.

Starting donation at just £5. All money I will split equally between The White Helmets and Doctors Without Borders/MSF 

Make the £5 (or more) donation to Paypal. PLEASE ADD £1.50 to cover postage too – unless your donation is over £15. I will cover the postage costs for you for your IMMENSE generosity.

DONATION HERE:

https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=SWMGL3DWTSVPQ

Email me if you have any issues or questions! smizz@sarahsmizz.com

Thank you for taking the time to look, and even more MASSIVE thanks to everyone who has already donated to get this print.

Lets Be Kind Again (we can be the change!)

(More prints coming soon too)

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What endures, what lingers, and what gets washed away?

It’s been a whole year since the last Thanksgiving, already. I know, Thanksgiving as a Brit living England is technically not my holiday. However, I wish we had something similar in the UK. Like, I dunno, a Kindness-Day – a national holiday where everyone gets the day off & it’s a reason to take the time to be with those who matter to you, to think about  what we have & help others out – without it having to be related to some underlying pilgrim genocide, or unrelentless capitalism. But you know, a time to take in & be present for all the small things. Because the small things are the things that probably matter the most. And you guys have given me the bestest small moments this past year.

I started to pen this post in my head, slow walking home through a freezing fog through the quiet neon light of Sheffield city streets. I do like evening walks like that, just listening to christmas-jazz music.  But it’s also made me realize something about Sheffield that I love. I love how Sheffield’s meteorology is an excercise in whims and micro climates. I can see how Sheffield has become a city for rebels, artists, hackers, nerds, runners and hikers.  It often feels like we are not on the same schedule as everyone else. Time passes in a non-narrative mish-mosh of second winters, monsoons and fourth indian summers, calendar dates be damned. Ney, all this can happen in just one day! Those small things.

2016 has been insanely kind to me, especially work wise. And you were all very kind to me too. I got to draw some amazing things,  people and talks. Stories. And I graduated with multiple prizes and awards – when I didn’t think I’d even finish the course. 

My medical ‘journey’ started making me think more about how narrative helps us all be more compassionate & empowered (if you’re telling the story)… How empathy is first an act of imagination. An illness is not merely a set of signs & symptoms – it is the story in which it is told that gives us the necessary clues of what needs to be done. What kind of support this person is looking for, how it is affecting their quality of life & ultimately what tests/treatments need to be done/undertaken. The thing is, it’s often the smaller things in a healthcare pathway which makes the most personal difference.

It made me realise  how I can never be certain of anything. We are made from our experiences – our failures & successes, our loves & dislikes, what we have witnessed; gentle creatures that get hardened by tragedy. I walk through streets, sit on the bus, in hospital waiting rooms and cafes and think about these people who surround me, I wonder what their stories are. 

Because I often find it hard to concentrate these days due to unruly fatigue, brain-fog or just general overwhelming pain on top of deadlines  – I’ve spent a crazy amount of time online & reading books trying to find a cheat to trick me into being more productive & waste less time. Ultimately – I’d like to gain more time so I don’t have to carry the guilt of not working as fast as I used to do.

But all i’ve learnt from this is that we are never-ever-satisfied. Life coaches think they’ve figured out the secret – to delete all your apps on your phone. Bullshit. Just turn it off!  #firstworldproblems. We await bigger phone screens, & watches that do the same as our phones  and complain about things that are arbitatory. I too am guilty of this. 

 But it’s all just more proof of us not enjoying our smaller things.

Robin Sloan in his book Mr Penumbra’s 24-Hour Bookstore writes about this idea that basically you write a book, a “Book of Life”, that represents everything you have learnt in your life. You work on drafts your entire life and it gets stored and read by a privileged few upon your death. Our lives are filled with a desire to know the universe, and to be known. To leave a dent. 

To not be forgotten (my own fear).

As time becomes more valued to me as I know how quickly it can be erased, I started thinking about “quality time”. And its role as the primary means to an end for a fulfilled life. This quality time should be with our own selves, with our interests, and with those people we connect deeply with. They each feed into each other, without one – the others become disconnected. Quality Time makes extremely clear that those smaller things become some of the most important moments in your life. Be present for them, but that’s not easy. Cultivating quality time means attempting to remove circumstances that hinder quality time, and not all of us have that luxury. 

I am learning to be wild again.  Next week I head back to the U.S.A. again!

I truly believe one of the keys to happiness is to build meaningful ways to make a living whilst working on something you wholeheartedly give a shit about — with good human beings who you give a really big shit about.

In each of our lives, things have changed, for better and for worse. Change and struggle is part of our every day. Becoming and being a parent, as many of you are, is a struggle. Starting a new course, job, moving house, starting a new relationship is all full of struggle. But it makes us better, in some small shape or form.

Being sick reminds me that whilst we might understand the surface of things, deep down there is unprecedented amounts of uncertainty that we have no idea of. All I know is that this Thanksgiving I am happy and thankful for the smaller things. The ability to hold a conversation, the ability to write a blog post, to have so many amazing friends dotted around the world that I can see  any time or throughout  the years. I get to travel. I get to try and make a difference. I get to draw and learn for my job. I get to hear your story. I get to call you my friends. And i have shelter, and warmth and food (most of the time). 

I believe that whilst our trauma’s may linger, kindness & friendship is the thing that helps us endure. 

You guys have made my year. I hope that together – we can continue to give just small pieces of everyday kindness to both loved ones, friends and strangers. 

So this Thanksgiving, I ask you: What endures, what lingers, and what gets washed away?

 

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