wellcome collection | misbehaving bodies

An exhibition that opens up the discussion about life, illness and death...

...that's thankfully void of any hint of 'inspiration porn'. On Tuesday I went to see an exhibition that I've been wanting to see for a while yet at the same time I've been putting it off. 'Misbehaving Bodies' at Wellcome Collection comprises the work of two artists - the late Jo Spence (1934-1992) and Oreet Ashery (b.1966) Both were born in different eras and explore particular aspects of living and dying with illness through the use of different media, but ultimately they both leave the viewer considering how illness shapes our identity.

(1) Jo Spence's self portraits

(2) Some interesting literature

That's something I think about a lot and I think I've tried to write about it often on this blog. I am more than my illness but at the same time I accept that it's a huge part of who I am. I just wonder what parts of me would be different if I had been born healthy - would I have been as mature for my age? Would I have been introverted and shy as a child anyway or was it a result of spending so much time alone and away from school when I was sick? Would I be such an avid reader? Would I love fashion and art so much if I hadn't used it as a way to escape from the world? Would I love to walk everywhere if I'd always been able to do it so easily? Would I love people as intensely if I hadn't gotten so close to never seeing any of them ever again? I try not to think about those things often, because it's a pointless fantasy to dream of a life where I don't have CF - sometimes it'll pop into my head in the same way I might briefly imagine what it's like to be an Oscar winner or on the cover of Vogue or Serena Williams (we all have these little daydreams, right?) I'll never know unless one day I get to live some kind of alternate life, but really I've no doubt that illness has shaped my identity in a huge way. It alters perspective, which in turn affects choices that shape who you are.

(3) Jo Spence's scrapbooks

Jo Spence's series of photographs taken over the years she had cancer had me pondering the question from a different angle - her work reclaims a body that is controlled not just by illness but other people. Medical professionals, caring loved ones, even the media. As the media rarely shows the whole ugly truth about disease - scars, vomiting and other bodily functions are kept neatly out of shot so that illness looks suitably sad but palatable for the average viewer. Spence's portraits are confrontational, showing her at her most vulnerable but to me they convey an image of strength. They reveal her truth of her lived experience, which I think is often drowned out. In British culture I don't feel that we are able to discuss illness very openly without resorting to stereotypes. People often project their own fears upon a person. They can infantilize, disbelieve, pity, reject, fear, assume. However, I don't think this always comes from a bad place. I'm not blaming individuals but more society as a whole as we don't know how to discuss illness and death very well at all as they're just not visible. This is partly why so many people with chronic illness, myself included, are so active online. When you don't see yourself reflected in traditional media it can make you feel alone and as if you don't matter, when of course you do! With cystic fibrosis for example, many of my friends had little knowledge of how it actually affects me so it was good to write about it to tell them and in turn I think a lot of other people have since learnt about it too. The same goes for transplant and the myths surrounding it. I mean there are lots of people who don't realise the danger and risks and the short life span of transplant recipients as it's not a comfy subject, so hopefully my social media goes some way of opening that unpleasantness. It's not a good thing but that doesn't mean it's always a bad thing either. It helps to live life a little more on my terms, which is what I think Spence was doing with her work. 

(4) A still from Revisiting Genesis featuring 'Bambi' played by Martin O'Brien who has CF

(5) Revisiting Genesis

(6) Susan Sontag

Which brings me onto Oreet Ashery, who also explores representations of illness and death but through the medium of film. One of the characters has CF (of course CF was going to pop up in an exhibition about 'misbehaving' bodies!) and is discussing options for life after death through the use of technology. Ashery's work looks at how capitalism may continue to control our lives even after death and find ways to profit, but it made me feel positive. I'm not on board with Black Mirror styley avatars, but the idea of a digital legacy is one I can get behind. There are arguments against social media and how much information about ourselves is accessible online, but at the same time it's lovely to go back on a passed loved ones social media and remember how they were through their insta pics, Facebook statuses, even what they might have loved and pinned on Pinterest. And of course some people kept blogs where you can almost hear them speak as you read. We keep archives of ourselves online, which in my opinion is a good thing. 

This post is lengthy but as you can guess it got me in the feels and I'll be thinking about it for a long time. I'm pleased it opened the conversation on illness and dying as all too often it's barely mentioned in detail. It centred the discussion on the individual - it didn't lump everyone with illness into the same group and it offered a perspective from an ill person's viewpoint rather than through the lens of the medical profession, a charity, a piece on the news and so on. As someone in a body that has been oh so naughty, 'Misbehaving Bodies' was a positive experience that had me crying at the end. Happy but sad, which pretty much sums up the weird contradictions that living with illness often brings.