WHY JOIN THE DISABILITY ARTS AND WHAT DOES IT MEAN?

Myself giving an artist's talk at a DAC,
Disability Arts Cymru launch event in May 2012

Someone asked me why I would want to label my art as disability art. I'm sure it all looks quite mysterious to the outside world. Well, to be honest, I'm still not sure how useful it is as the art has to be able to stand on its own regardless, and real practical support is hard to come by. However, it's something I had try out when I realized that there is such a community and tradition in the making. I was clearly no longer able to compete with able bodied artists, and it was not about trying to take an easy route as some people seem to think. Rethinking my approach was a pure necessity, and I gained a few things from this new way of thinking throughout 2012 . Here are some of my points;

Anyone who is disabled and creates art is a disabled artist. They can be deaf, dumb, blind, bound to a wheel chair with spinal injuries from an accident, suffer from chronic fatigue, fibromyalgia, arthritis or any other disease that is more or less debilitating. I didn't know this until I discovered the supportive community for disabled artists and art here in Wales. Most people encounter some form of disability in their lives so there is no need to think of disabled people as very different from "the normal" human beings. Whether we like it or not illnesses are a fundamental part of our lives. Most people gain from a supportive and positive community even if it's only in a moral and emotional way.

Of course the definition of disability arts is controversial - but I won't go into that as it's all a bit complicated (you can read about various view points on the internet). Some of the disability art reflects peoples' disabilities, but usually it's not expected, or a condition even. Of course, some of my art does reflect these issues and it's seen as a positive thing by some people who help govern these communities. The disability arts in general is basically a community that supports the battle against inequality. Just as people have accessibility issues in the physical world - athletes being a case in point - artists with disabilities have accessibility issues in terms of how they are being treated and what kind of opportunities they have compared to able bodied people. Not least, as in my own case, a matter of not managing on the "normal world's" terms. I'm not sure the support is sufficient in my case though because I'm still considered "too articulate" and have "too great a body of work" behind me (in the Arts Council's rather devastating words since suddenly being good wasn't right). It's terrible politics in the end that govern who gets really useful support.

Outsider artists meet similar criteria, they get help to exhibit their work from charities such as Outside In because their disadvantaged position makes it too difficult for them to compete with "normal" and able bodied artists. In reality, these people tend more often than not to have serious mental issues and even a low mental age, and the art work is more often than not the kind of art that the art world doesn't recognise as valid art. I'm clearly on the fringe of this group of people, and I can see that it's the extremer end of the spectrum that gets most of the attention within this community.

The art world is ruthless, and this is something that has become even clearer to me while in Britain, and it's also something I have decided not to participate in any more. Part of my problem has been trying to push myself beyond my limits to compete with able bodied artists, and it simply wasn't working. I have been feeling burnt out and lacking in the joy of creating. As it was putting me under extreme pressure I decided to join these groups of marginal art. But - having tried it out I'm not sure it's right for me either. It's not so much being part of these groups per se, as being part of anything at all. Sometimes I feel more like an uber-outsider, someone who is always on the outside of everything, including that which is already on the fringes... perhaps it sounds a bit big headed but I simply don't know if I am able to be part of any community for real, so far I haven't found one that would meet with my needs in a really snug way. I continue to support the disability arts and fight prejudice, but other than that I don't know what lies ahead and how I'd like to define my art in the future.

CAN WISDOM BE DERIVED FROM SUFFERING AND DISABILITY?

Vivi-Mari Carpelan: "I'm Not Ready Just Yet",
Handmade collage with photographs, copyright 2012

Here is the latest in my attempts to visualize the helplessness that is often experienced because of a chronic condition. Very often it's a situation that causes the subject to wish they were dead, yet on the other hand there is usually a will to live at the back of this person's mind that is in deep conflict with the suffering they are going through.

This is a cross post from my spiritual blog but I felt that it would be appropriate to post here in the context of disability arts. The reason I'm working on Project X is that I want to talk openly about suffering and its implications.

I claim that it's not a very spiritual thing to say that suffering is pointless and that we should all just shape up. It's easy to condemn suffering. It's easy to say that nothing can be gained from suffering. It's easy to say that seeing anything useful in suffering is dwelling on negativity. However to me these are catch phrases that people throw about when they think they are soon going to be enlightened. i.e. in my view it's not necessarily an informed point of view. It's a view point that is assuming that if you do everything right, i.e. by the book, then you'll be illuminated and wisdom will follow. I'm not saying it's untrue, but it's wishful thinking and many of us have a lot to deal with in the real world before we can consider any such satorical state of being. I also feel a bit disgruntled when I hear this kind of view since it excludes the richness of human experience in favour of some hypothetical spiritual bliss that may or may not arrive at some point in the future. Of course I'm only guessing here as I have heard this kind of talk before, and it's usually been connected to the self-developmental stages that come in the very beginning of the spiritual quest. 

I do need to think clearly about what I want to say through "Project X" which is my art project about invisible illness and its place in society. The point is not to dwell on negativity and suffering, but to show it clearly so that people can recognize it and accept that it exists. I also want to offer optimistic points of view, but am not quite sure exactly how I'm going to go about it just yet. The point is, a healing of a whole host of social demeanours related to disabled people can only happen after a collective acceptance of disabled people has taken place. Healthy people have no idea what these people are going through. It's so very easy to dismiss them as negative, when in fact many of them are incredibly courageous and fine human beings. It's a whole other world that needs to be integrated into society. At the moment it isn't. And things have only gotten worse since the right winged (tories) have been in power. As Ken Wilber pointed out, their point of view is that these individuals have only themselves to blame and it's up to them to fix their own problems. One tory just said "stop moaning and work harder" in public - this is supposed to be helpful in such dire times of financial crisis. It's horrid and simplistic. Many disabled people are being forced to work when they really don't have the ability to go out to do a job on specific hours every day, and others who are healthy are not finding any jobs. My husband and I are trying to be creative but there is only so much we can do. We also try not to focus too much on lack, but it's difficult not to when it stares you in your face on a daily basis. It takes super human powers just to stay reasonably balanced in a world that's as volatile as this one - for a disabled person it's so much more work. 

To tell a disabled person that their suffering is not of any use could be disastrous. I'm sure many of them don't think of their suffering as being meaningful. They are often the ones with the greatest depression. Of course disability doesn't necessarily have to imply suffering, but I think it's rare and often a case of either mild disability or a truly enlightened state of being. We all need some feeling of meaning, purpose and hope. It doesn't matter that much how we gain it. I think that any way is a good way if it helps a particular individual to get through the day with a sense of achievement and self-esteem. Sometimes life is really mostly about physical and emotional survival. Even I have trouble to take the spiritual point of view into account on a regular basis. It used to be much easier, during the "honey moon phase". I was single, I was a student at University... life was not so complicated back then in spite of having to do a lot of inner work. More than anything, there was time, as well as constant reminders due to the nature of my studies at Uni (comparative religion). I also had plenty of friends who were spiritual seekers. The situation has changed radically. 

So why is my situation changed? Perhaps it's for a reason. I'm learning new things. There's a whole other emotional dimension added due to the fact that I'm now married. There is also the Arts, and the Disability Arts community. This is my work now. I believe that wisdom can be had from suffering - it may not be ultimate wisdom but it's an understanding about the human condition which may well be why many of us are here in the first place. It's understanding the nature of suffering and what it means to other people as well. How does one accept limitations in oneself as well as in others? One can't have the latter without the former. Suffering can germinate greater compassion and humility. I say these are noble reasons for going through a lot of difficult challenges. I don't even want life to be too easy, as it would be boring and pointless. I admit that I would prefer life to be getting a bit easier as I'm getting older, I'm middle aged and my health is never going to be fantastic. I would appreciate some happier times. But I know I can't have that until I have learnt some fundamental lessons about caring for other people. Sure one could opt not to go through any suffering, and one may even be a good human being. But how likely is that? I am not interested in being a selfish bastard even if I was an enlightened one!

A COLLAGE ABOUT INVISIBLE ILLNESS "X"

So I finished the big collage that has been featured piece meal in previous blog posts. I was really hoping to create an arresting image of life with a chronic, but fairly invisible illness. Realizing that most people wouldn't be very interested in my personal experience, I hoped to create a general atmosphere that many other marginalized people can identify with, and possibly others with some empathy and brains.

What my message really boils down to is feeling neglected and bypassed by society, but there is also a strength in being able to have an outsider's point of view. As usual, I have hoped to express a paradox or double message of suffering and alienation but also strength of character and a possible insight into the deeper layers of life. People with disabilities are not just weak individuals. Very often illness can teach them lessons of life that other people can only dream of (if they care, that is). Of course, it's a sign of a civilized society that it takes care of its weaker individuals. But our society still has a long way to go. It needs to stop bickering over power and border issues - these tend to go round in circles as that which is being destructed has to be mended. It needs to start focusing on the real needs of its members and those who are healthier and wealthier obviously need to take more responsibility for the whole.

"X - Surviving in the World of the Fitter" (56x76cm) Vivi-Mari Carpelan copyright 2011

Second version of the picture above... an attempt to make the figure a bit less "in your face2,
especially as there are some issues with it that I don't know how to fix.
I also wanted to tie in the top bit with the lower bit a bit more.

"X" stands for many things. X marks a spot - this is where the problem lies (it's invisible to the viewer so must be marked with a sign). X is an unknown denominator (in mathematics x is commonly used as the name for an independent variable or unknown value) - often when it comes to physiological problems, the causes and effects are not known or well defined and even diagnoses can be elusive. X signifies a multiplication operation - physical symptoms have a tendency of multiplying over time as one thing leads to another. X has crossed something off or out. X-rays reveal physiological disturbance invisible to the eye. X can replace the signature of someone who is illiterate - this could symbolize the inability to fit in. In some countries (such as Finland where I come from) X is commonly used instead of a tick in a box - I tick all the boxes for someone who is crossed out of society, for instance.

There are also the X-files, which are not open to the general public due to their abnormal nature, and X-rated i.e. censored material which is also available only to the chosen few or those who especially choose to partake in this material. During the plagues, X's were drawn on the doors of those afflicted with it. "Shunning someone like the plague comes to mind...".

But most of all, X is an abstract sign that points to a concrete phenomenon.

As I'm sure anyone can see, the bottom half (from which the figure is more or less cut off for better and for worse) only comprises men and some animals. I decided to omit women in order to stress that we are still obeying patriarchal values and that they obviously don't work very well. However, I would say that people in general are responsible for the state of society and it would be false to portray only high powered authorities as responsible for the chaotic state of affairs.

In reality there are so many social issues to make art about, but it's not easy to find a visual language that is precise without being trite and banal.

This piece has now been sent off to be evaluated by a panel of (as far as I can tell) high powered curators for the Oriel Davies open art exhibition nearby. They ask for an artist's statement of no more than 100 words. I don't know whether it's a good thing or not. Sometimes I think it's useful to have to compress my intentions, and I'm sure it's easier on the judges too... I find that I need to rewrite my statement each time I enter something, because my focus always changes even if it's ever so slightly.

I have now decided to see what I can gain from going with the flow, i.e. find a way of practising art as a disabled artist. It has been a hard decision to make, probably because there is no such thing in Finland unless you have severe learning difficulties... In which case we're not really talking art but therapy (in most cases anyway). However upon some research (which often happens in the form of asking around, and I cannot stress enough how well this works over here) I have found that there is a niche for anyone who is marginalized by society whether it be due to mental problems, physical health problems or financial problems.I joined a gallery called Outside In which is precisely for the promotion of work by such artists, and it looks like there are exhibitions you can enter for free. This is very good news and one of the advantages of living in a big country like the UK. Charities abound. It's a bit strange and different but it's just as well to get used to it. I have also found out about something they call "surgery", a meeting for disabled artists to discuss their projects and needs for funding (as all of it is so much harder for those who lack in health). I am now a member of Disability Arts Cymru. What I am really hoping is to find the route of least resistance, and being able to relax a little rather than trying so desperately to keep up with the healthy lot.

Vivi-Mari Carpelan, a Finnish artist resident in Mid-Wales, has created symbolic images since 1991. Afflicted with a chronic illness since childhood, it comes naturally to her to explore emotional issues of belonging versus not belonging in a society mostly designed for people with wealth and health. Her work expresses paradox, as a fundamental and crucial characteristic of reality. While ill health and alienation are linked with shame and helplessness, these can also give rise to strength of character, deeper insights into matters of life and death, and the advantage of a more objective viewpoint in regards to society at large.

"Ephemeral Ways" (60x60cm), my second entry, created with real ephemera found in a derelict house in Kansas, and my own photo of an old graveyard with European immigrants. 
Copyright Vivi-Mari Carpelan 2007

NEW WORK UNDER WAY...

"Don't you even think about putting me down!!"

The open studios are now closed... I have to say the last weekend was a bit of an anti climax and our press release (which really we shouldn't have had to make ourselves) appeared in the local paper one day before we closed... Some people have thought the PR was poor. Some people also came to us complaining that other artists and galleries that were supposed to be open weren't. That's pretty bad for us! I can understand people are upset when they have to drive far into the hills on tiny country roads...

The good news is that our work is well on its way. Martin's second drawing for the illustration project soon to be revealed didn't quite work out. I told him upfront that I didn't think it was good enough... after some initial irritation he agreed and started again. I think for that kind of project you can't expect to get it right right away - free drawing, requires so much practice. How many times I have also abandoned work in the middle, it hurts but it's sometimes necessary. So here are some shots of the work situation in my studio....

I tend to end up on the floor... especially when the work is big like this

However, what you don't see is me lying flat on my stomach trying to draw a pylon, moaning loudly in the process. My back muscles just won't take any such drawing practice. The big figure is bad enough... not to mention the clouds. The physical challenges are quite depressing but I try and find ways around the problems. It's going to be - I hope - quite a hefty collage about problems with society, featuring among other things this striking military chopter which was free on the internet... Though I'm a girl I can't help thinking it's quite cool as an object, but it's probably laden with missiles... Why doesn't it surprise me a war related picture like this is free wall paper!

Martin has started drawing:

This piece is about order and chaos as exemplified by the golden mean and the tendency of our reality towards entropy (the skull)... This is not part of his actual book project but something he has in mind and is practising on in order to get into the habit of drawing every day. You can buy it, please see his blog.