This is an interesting zine for me.
It’s one that’s as much ‘what I bring to the party’ as it is one that is about the work itself. I’m going to get a mildly philosophical, political and personal – so be warned!
There’s a discussion to have here about the project itself, around purpose and worth. This includes the wider discussion about identity and what that means and is at points in life.
A separate discussion about the actual physical issue and its content is needed as well.
My identity and chronic illness, or; identity, it’s not for everyone
Oddly, for someone who’s pretty healthy currently, my life has a few eras of chronic illness that mark my identity. I’m not sure I should delve too much about these matters as that’s not really the point of a review, to talk about myself in detail, is it? Yet, considering the project, I think it is the point, will I find my reflection or feel left out?
There are pieces in here that are so close to the bone of my own experiences that I’m never going to manage any kind of distance to discuss quality. However, there’s an argument to make about the worth of that experience in itself, (which I’ll make shortly).
Starting at the macro then; philosophically I have an issue with the conception of identity in and of itself. It’s one of those reductive concepts that imply a person is a thing and a thing is a single whole. By which I mean, to be personal for a second, people often believe a way of feeling or an experience means you have AN identity. I’m a white, middle-class man. That’s apparently AN identity, except, I’m someone who has mental health issues and I’m someone with a history of chronic illness and I’m someone who parents a child with chronic illness and that child happens to have learning difficulties. Oh, and I grew up as the child of hippies in a working-class area, in the 80’s in Wales, in a post-industrial town. So where do I have my IDENTITY in that, as opposed to talking about the experiences that have shaped me as a person?
Also, there’s the opposite side of this which talks about the identity of a group as if it’s all the same for each one. What is the identity of those with learning difficulties, for example, it’s different for my child than it is for someone with autism or downs syndrome. I’m pretty sure the experience of a person in America is different from a person in the UK, especially, getting back to subject, when it comes to chronic illness, because at least we in the UK don’t have to worry about paying for our medication or suffering or dying because we can’t. That’s a real and true issue in America.
There’s the further issue of awareness outside of that identity group. I wonder how many people could even conjure an understanding of why I’d mention growing up in Wales in the 80’s without just thinking about neon wearing kids dancing to Duran Duran, because, you know THE 80’S. I’ll tell you, that’s literally NOT what it was like then and gives the absolutely the wrong image of what it was. So, as I say, identity is just a great way to allow stereotyping, misconception and failed understanding. Even with good intentions. I’ll also call out identity as a renamed bigotry in certain hands. Everyone knows disabled people are in wheelchairs, so only wheelchair users are disabled? Sound familiar? Thought it yourself? I encounter exactly that attitude every day.
I guess what I’m trying to say is that identity sounds simple, but I believe it is essentialist, reductive, stereotyping and exclusionary more often than not.
I’ve had a 6 month long stay in hospital because of a childhood illness, I’ve had nearly 9 months in a hospital hospice because of my first child’s initial health issues. So am I the parent who was a sick child, the parent of a sick child, the parent (who was a sick child) of a sick child. Where does my niche go and where does my experience fail to meet the description and purpose and in failing to meet that do I end up feeling like my IDENTITY is not true, angry at not seeing myself represented?
Am I seeing too narrow a stereotype or caricature and what is the impact of that being delivered to the public as well? Will they, the inexperienced, limit themselves by only understanding the issue as represented here?
That really is the matter for the project to consider and the yard stick against which to measure it. How does it deal with these matters of representation, of diversity, of essentially becoming a gate keeper simply by existing!?
That’s a heavy matter, particularly considering who it is trying to represent, people already suffering in life in some way, shape or form.
I can see why the first issue dealt with identity. It’s a matter of setting out your stall, delivering your agenda for all to see. It really does need to be up front, because it really does tell you whether you’re in or out of this project. I know I keep banging on about this, and I’ll get to it, honestly!
First though I want to talk about another matter of inclusivity outside of the politics of representation. Does the zine communicate effectively with people who have a wide range of need, including some who may have learning difficulties? Can it deal with all of these when it is a project that relies upon open submissions? Particularly when it’s dealing with the cross-over of chronic illness and artistic expression?
I think they’ve done some very clever things that mean that this project is accessible to a wide range of needs. I’m know for certain that some of these works by themselves would communicate to my child with learning difficulties. Yet the editorial approach has made the issues raised in those works accessible to them. I’m no mind reader so I won’t claim to know whether they planned that or came upon those solutions by other routes. In the end that’s not what matters, it’s accessible in a very clever and low-key manner. I want to pick up on that here, because I think it speaks clearly about the strength of this project, it’s humanity and openess.
On the second inside page they have a whole series of speech balloons summarising the content and opinions of those present in the zine. Pithy little comments that give quick insights into their experiences. It’s a clever way of priming people to the content they’re about to encounter.
It’s also a good way of making some of the internal, often expressionistic or abstract work, more accessible to those who can’t understand complex abstract ideas. It means that, although certain work will never mean much to my child, I can still have a conversation around the subject that it deals with. It frees the art up to be expressive, whilst still highlighting the content in a way that’s not forced or invasive to the art.
I’m also pleased that it’s meeting its own criteria of talking about both chronic illness and art dealing with chronic illness. The art is served well, with good reproduction and the physical item itself is on lovely paper with decent printing. More importantly, to me, it’s cleanly laid out and well labelled with details of the contributors, so it’s easy enough to go and find out more about their work if you want to. Simply put, it’s a well put together package, well edited to make it as accessible as a resource as well as a magazine to be enjoyed in and of itself. The mix and pacing of image and text is also well handled.
The project is also an interesting manner of dealing with chronic illness, dealing with aspects of daily life as well as more philosophical matters, for example, the second issue deals with having a sex life with a chronic illness. Identity is an interesting point, but it’s very BIG PICTURE. Sometimes you just want to know how to live through a day and the philosophy of it all matters much less.
I can imagine these being a great resource both online and within hospitals. A good library of these dealing with the philosophical and practical matters of life will make a good companion for someone dealing with chronic illness in their life, whether their own or someone else’s. Considering the subject, I think that’s important and appropriate. What’s the point in having this if it’s not a resource to help those it’s talking about.
So, finally, to talk about what’s in here on both the macro and micro scale, by which I mean – how well do I think it deals with the issue of identity and the associated matter of representation and what do I feel after reading the contributions included in here.
Well, firstly, some pieces are privileged with the nature of my own experience reflecting their content. There are those that aren’t and are still fascinating and there are those that aren’t my sort of thing. That’s again a ‘me’ thing though.
There’s a diverse range of experience. There are pieces that are short and blunt, some more like memoir. What all of them have in common, is that they talk about the personal, not the abstract. These are about PEOPLE talking about their experiences. Really, that’s how it gets around the matter of philosophy and politics. Everything is grounded in people and their experiences. The editorial team also take great care to identify that they are trying to reach out to as diverse a population as possible. The content is treated with respect, but the editorial tone is light, open and welcoming. It’s an encouraging approach, not a distancing one.
There is a work in here that I found fascinating as an artwork communicating the intangible. It tries to make visible the invisible and uses such a beautifully simple idea it’s almost poetic. Considering that the solution is crumpled pieces of paper, I’m genuinely surprised by how visually interesting it is as well. I’m intrigued to see more, just because I can buy into that simple visual communication. It makes it very quick to get an insight into how day to day life can be for that person and for all suffers of endometriosis.
It also speaks of how different approaches can evoke different reactions in different people for different reasons. A piece like that, so abstract and so different from my experiences. My access into that is very much an appreciation of it as a method of communication, it’s an intellectual reaction entirely.
Very early on in this review I raised my own question about seeing myself reflected in pieces and how that skewed my ‘critical’ reaction to them, and what that meant within the context of this zine.
Well, I think it speaks volumes that there are pieces, dealing with people’s experiences of illness that are not mine, that can still evoke or trigger recognition in me. In particular there is a very succinct piece (similar in visual style to the cover) that so sharply reflected one of the worst experiences of my child’s early illness that I was nearly shocked to tears at the memory.
I think it’s that recognition that gives this zine it’s power. I get to see someone whose illness, whose circumstances aren’t my own, reflecting my own feelings, so I get to see that not everything I experienced is niche, is my burden and mine alone. I think that I’m never going to identify with identity, but I can experience the sense of belonging to a community with shared experiences. Really, that’s the greatest comfort you can offer anyone who feels isolated and alone, the opportunity to recognise that there’s a community of people just like them in the world, even though they are not like them. This project delivers on that opportunity.