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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people are amazing

Yesterday I had the pleasure of drawing another cool thing for 1 small part of the NHS. The NHS Commissioning Board, the bit where Citizens who work within NHS stuff, or the voluntary sector, and innovators get together and share their ideas on how to make the NHS the best it can be, and how to move forward the work they are currently doing. How GP’s can work better and effectively with their communities, relieving pressures like A&E admissions and so forth.

I always love doing my day job of drawing other peoples plans, ideas, criticisms, or solutions. I’ve heard  so many amazing stories by drawing it for them, from the editor of W.I.R.E.D Magazine, AMAZING individuals who did a TED talk, people who work at Google and YouTube (Technically Google now), BBC, Guardian and so on. Folks at Channel 4 co-production producers (Embarrassing Bodies live, Big Fish ect) own some of my work. I love that. I go away and think, I’ve just drawn something I had NO idea about until right now. And I love it.

Yesterday was about the people though. I think I met (and in some cases – re-met ) some of the most nicest & smartest people, ever. I can’t really explain how sort of inspired I am by their actions and stories. How we all know that there is something urgent and something at stake here. And these people’s purposes, their motivation, is about making sure that in years to come – the NHS is still ours. I heard so many cool and great ,and even touching, things that CCG’s across England are doing. How doctors (GPs) are mega passionate about really getting to know their communities. What a wonderful job to have or a great thing to be a part of? These people, every single one – from the ‘citizens’, to the organizers, and nhs workers, to the doctors, ect ect – are trying to make something work, with genuine passion. (One speakers sentiment was that usually you don’t know that you’re in the midst of  GREAT HISTORICAL CHANGE when you’re in it, until you reflect years later). I went home and googled my local CCG Doncaster  (Good ol’ Donxx) and saw that we have an awesome and lively twitter account (@doncasterccg). And I felt that, and hope that, my Doncaster CCG is (or becoming) one of the innovators of the new system change. I hope they’ll represent and do our local population proud and well.  Although, I am hoping that soon I won’t be living in Doncaster, but whatever.

It got me thinking about the paths we take. This journey that I accidentally stumbled upon has reignited my hunger for social change/justice again (not that it ever went away, it’s just gone  a tinnnny-bit dormant publiclywhilst I’ve been fighting my mystery illness shizzle). I don’t really know where to start, but I believe my new collaborative project with Paul Harrison called F/O/R/C/E lectures (Free. Online. Radically. Collected. Education.) http://forcelectures.org/ is going to be the start of something BIG.

The tragic passing of Aaron Swarts (http://www.wired.com/threatlevel/2013/01/aaron-swartz/)  – an acquaintance through a project I worked on in 2009 – but I saw him as a friend in the Facebook friendship sort of way because he was such a nice person    – has only made my commitment to our freedom for free education and healthcare even more  potent.

Guys, PEOPLE ARE AMAZING. There are so many people out there who are thinking of us. In a good way. (Some that are thinking of us to exploit us – but that’s another story) BUT the people who are doing great things are trying to stop those who are trying to exploit us. Don’t you wanna be a part of it? I wanna live in a better world, where inequalities are resolved, rather than ignored or taken as an almost given. I want those less able, or most vulnerable  or someone who might need some support for the first time in their life have someone to help them out. And the people I met yesterday represented LOADS of people across the UK trying, fighting, working extra unpaid hours, for us. Thank you, guys. If I ever see my hot GP again, which I’m sort of hoping I don’t. I totally just want to tell him what an awesome job he’s doing & how thankful I am for genuine, caring people who are taking care of stuff for us.

People are amazing. Yeah!positivity

POWERnoid

POWERnoid

“That of the benefactor – of an ideological patron – an impossible place” – Walter Benjamin, The Author as Producer.

The abuse of power comes as no surprise.

May 6th 2010. It’s election night in the UK.

Indeed, my first general election vote revealed to be a 1st for many who were turned away at polling stations, as the organization wasn’t prepared for such a big turn out. The images of people attempting to stop ballot boxes leaving polling stations because they weren’t given the opportunity to exercise their civil right to vote stood out for me. This image encapsulates my art practice.

It could be described as Anti-establishmentarianism.  Wikipedia defines anti-establismentarianism as a term that: “views a nation’s power structure as corrupt, repressive, or exploitive.” In this instance, I would like to substitute “nation” for “institution”.  And by institution I am referring to systems such as the artworld, education (university/artschool), to governmental agencies such as immigration.  In short: the effects of neo-liberalism on criticality and spatial cultural identity.

I now draw-write fictional satire based on loose facts about the systems that surrounds us. My piece for the Greyout MArt degree show exhibition is a drawing examining institutional critique in art institutions whilst examining the insider/outsider position, revealing contemporary debates such as utopian ideals, governmental funding structures and geo-politics in the artworld. I do this by fictionalizing art institutions as the mafia in a humorous manner – linking it with the historical gangs of Sheffield from 1920 onwards as a way of looking at different visual representations of neo-liberal capitalism.  This inspiration comes from Margaret Thatcher famous speech about market liberalisation stating that ‘there is no alternative’. The piece asks what imagery this economic system bequeaths to us from postmodern architecture to the problems with jumping class barriers in systems that seem inaccessible.

There is a conscious decision to use a paranoid voice in the narrative as a way of pushing the edge of a rigorous criticality moving the narrative forward.  This paranoia allows the audience to see the playfulness of the subject matter and so SCAF have no viable way to sue my ass.

There is a weight of art history hording the viewer as it questions what it means to be an emerging artist within the current system? Questionnaires in the piece represent the managerial beurocracy that lines neo-liberal capitalism methods, allowing its ‘customers’ to believe that they have a say in the system.

My practice has always been concerned on some level with this democracy of information, allowing us to depict the disadvantages and injustices that lay in the foundations of the systems that surround us from regeneration, educational, government to artworld structures.

In talking about the processes of my practice, I think of the text the ‘Artist as Ethnographer’, and think of my practice as totally research led. It’s interdisciplinary.  In an illustrative way I often borrow research strategies from the social sciences (covert participant observation as a gallery assistant in NYC, working with the community making publications, interviews etc.) and working from social & local history. All of which inform the art-object. I also do this through a kind of role-playing as the forms my work takes on are deliberate contrasts to authoritative and didactic modes of presentation (such as comic-like illustrations) with non-establishment techniques (such as those that relate to street art subcultures like my fly-postering fake advertising posters).  This is also reflected in the lecture performances I have made, such as Research Excellence Feedback.

With neo-liberalist capitalism, there is a belief that institutions have become highly bureaucratic in ways that are counter-productive. In this piece Antiestablishmentarianism is a means of reclaiming creativity, collective group organization, and individuality from the confining structure of the institution.

Working with AREA Chicago and looking at projects such as Joanna Spitzner’s project; Art School in the Artschool have initiated questions within my practice such as:

How do bureaucratic forms impede collective intentions?

How do we re-envision? Re-form? Re-construct institutions?

Are there good institutions? How do they work? How do we re-claim the (re-)structure of the collective from the format of the institution?

Such questions allow the offer of real-world alternatives that have always run throughout my work, such as alternative spaces, collaborative projects concerned with the periphery and architectural interventions.

These are carefully placed to help us analyze the relationship between what we perceive, and what we assume is plausible.  We only have to think the Giorgio Agamben’s State of Exception where Agamben asserts that the state of exception he describes is no longer a temporary state in times of war or siege, but that it “tends to increasingly appear as the dominant paradigm of government in contemporary politics”. The power structures that governments employ in supposed times of crisis are what Agamben refers to as the ‘state of exception’.  These increased extensions of power waiver the questions of citizenship and individual rights can be diminished, superseded and rejected in the process of claiming this extension of power by a government.