IS SOMETHING WRONG WITH THE DISABILITY ARTS? (GOOD NEWS TURNED SOUR)

"Entity" - photograph by Vivi-Mari Carpelan from the series "Traces"
See description below

Perhaps there is synchronicity after all, because my general depression since a number of weeks back has been coupled with some art related rejections that leave me feeling that I should really either give up or up the game by completely reinventing myself - I can tell you this is a very serious question for me at the moment. How likely is it that you can reinvent yourself..? Of course you can probably learn to deal with rejections in some way, knowing just how many artists are struggling for attention. But when the rejection comes from what you thought of a peer group, it feels doubly hard. 

Having worked for so long on Project X and Visible/Invisible, I really did presumptuously expect to get into this year's Shape Open on the theme (In)Visible. (Did they nick my title?!). It's about the repercussions of "coming out" as disabled, and stuff like that. The brief should have matched my project quite well. Neither my latest collage nor my film "Tides" that was part of the Visible/Invisible trilogy made it in. I thought, well if they don't appreciate what I've tried to express, then who will?

Though I realise the judges are biased in various ways and that my feelings are tied to the fact that I put so much effort into my project, exhausting myself in the process with a desperate need to communicate a message, I also do wonder about Shape's policy to invite non-disabled artists to participate. To me this is making the point that Shape is primarily working for the cause of disability, not for disabled artists and helping them get their work out into the world. The curator has even stated that Shape is about the art, not the artists. I realise it's all very political and governed by the necessity for PR, but this policy is making disabled artists forced to compete with abled bodied artists. I thought the point with the disability arts was to provide opportunities for those artists who find it difficult to enter the normal, competitive art world. Perhaps I'm completely wrong, but... it does seem to me that organisations such as Shape are in fact indirectly trying to encourage disabled artists to become as much like everybody else as possible, while attempting to show to the world that disabled artists are not really different than anybody else in spite of looking or behaving differently. To me it seems similar to feminism, which in its heyday was more about helping women to be like men than giving women the right to be themselves. It feels like it's potentially the kind of pressure to conform that we already feel from society at large.

It's complicated because it also seems that there's this thing that disability should be celebrated (as recently pointed out to me). I'm assuming that's because difference is considered a value in itself, regardless what the difference is. This could indicate yet another symptom of flatland, where any kind of difference regardless whether it's to do with sexual orientation, gender, skin colour, learning ability or mobility issues should be considered equal in the sense that they are as valid as the norms they are being put up against. Of course in a sense they are, but that's just part of the truth - minority issues are more different to one another than they are similar. A more important fact is that disability is severely limiting to the ability to function within the framework of society, and in this respect it differs greatly from other minority issues. The more disabled you are, the less you can function. Because you can't function, you can't work or participate in any of the grand schemes for the employment of disabled artists (employment, residencies, commissions etc.). The new different soon becomes the same.

You need help, and you need for others to realise just how much you need help. You don't need to be told that it's fine to be different. It isn't fine to be ill. It isn't a thing of joy that you should have to feel obliged to celebrate. You need to feel that it's alright to be who you are. What you need is for society (and that includes the art world) to value your input for what it is, no matter how small it is. This also means that there should be more opportunities for people like us, not less - Shape being open to non-disabled artists is no doubt eliminating quite a few disabled artist from the opportunity of showing work.

When Will Self has been going out with an appeal on BBC to support disabled artists through Shape, I'm thinking this publicity is also attracting a lot of go-getters who think it actually gives them street creed to  be in an exhibition like Shape Open. I may be very unfair but I can't help this has crossed my mind. I have asked how many this year were non-disabled but have received no answer. It also makes me sad to hear publicly that Shape is all about supporting disabled artists when this a half-truth. Perhaps they are afraid that disabled artists will drag the standard down to a level of amateur art, when they are trying to validate disability at all costs (what disabled artists create is just as good, blahblah...). Accessibility is not all about wheel chair access and difference is not just about a strange body shape, though these are important view points as well. There is a world of difference between someone who is slightly visually impaired and someone who is completely blind. Imperfection needs to be embraced in this over-sanitised world.

If disability arts organisations are trying to raise their profile by selecting only work that conform with the general consensus regarding the kind of art that should be considered "real" contemporary art, they are basically saying that disabled artists can do it just as well as able bodied artists. While this would be reasonable within the framework of an exhibition only aimed at disabled artists (because it's based on the idea of what constitutes good art), I don't think it's alright when a whole bunch of able bodied artists are entering the game. That's because you are then eliminating the important fact that a disability will almost invariably inform the art made by a disabled artist. It would do this through content or mode of execution. People who are seriously disabled will quite likely be limited in their expression. Of course limitations can encourage creativity, so this is not always a bad thing per se. However, there are many things many of us really can't do which simply limits our choices and may influence our ability to conform to the expectations of the art world.

I mean - through the process I've been going through I've started to imagine work I could do that would conform a lot more to the expectations of contemporary art, but I can't imagine how I would execute them. I can just barely make what I make now. I do not have the physical, mental and financial means to start looking for companies that can execute my wishes regarding bigger work and installations, and then store the work, and then get it out to exhibitions somehow. That's just for starters. I definitely can't do performances, which seems to be all the rage. I'm also stuck with certain basic software, with certain skills that I take long to develop on my own because I can't go on courses. I'm stuck with physical discomfort while I work which can be hard to resolve. I'm stuck with the inability to do anything finicky with my hands. I'm stuck with the kind of tiredness that can make it very hard to feel creative and focused enough to make something spontaneous and beautifully instinctive. I can only work for about four hours per day, and that's starting around 2 pm when I can finally get going. This is not to mention how hard it can be to formulate an artist statement on some days. The imperfections I've talked about in my work are inherent in the work itself.

Having said that, resolving the insomnia would be a good place to start making different work. Having now pondered this for a long time, at least I know in which direction I might want to try and go. At least I'm not completely cut off from artistic currents because of the internet and my artistic husband who talks to me and takes me places, so there is scope for change. For one, I'm done with trying to speak about problems no one wants to hear about, because being rejected for my messages is even harder than being rejected for my actual work. And perhaps this would also free me up to do more instinctive work, who knows.

I think that judging disabled art from the point of view of how well it conforms with general opinions on good contemporary art is false, because in the majority of cases it may well fall on its own impossibility. I'm not trying to sound patronising, I just think that a serious disability will invariably inform the work in one way or another, and that's what makes it into disability art. I know there are many opinions on what disability arts constitute (is it just art made by disabled artists or is it art informed by disability, etc) so this is just my subjective point of view. I personally think it should be about art informed by disability. Art with a heart, as heart is seldom seen in the contemporary art world -  ideally, it should be emotionally enlightening rather than just making another cerebral statement. While this doesn't mean that bad work in line of community arts needs to be accepted, it should perhaps be looked at with a more compassionate eye. Again, I am talking about compassion in the deepest humanistic sense, not pity. No one needs to be a pity case or to be treated like a victim, that is not the point. It's about raising awareness of what it's like to be an outcast or just different in some fundamental sort of way. Questions to support the evaluation process could be more in line with  "What does this work really convey? What is this person trying to say? What is this unique and interesting point of view about what it's like to be stuck in a decrepit body or mind?" rather than something akin to "how cool is this idea and does it fit in with the contemporary art world?". Many people who get serious ill are also very spiritual people, and their viewpoint gets easily overlooked in a materialistic world.

More than anything, however, the judges need to be in touch with their intuition and their hearts, in order to pick up on the real quality of the work in spite of possible technical flaws and shortcomings, and the fact that the subject matter and execution doesn't necessarily conform with the expectations on contemporary art. Back in the days when Gauguin started to make art that was more in touch with his feelings and unconscious, he felt very strongly that the majority of the people were not going to be able to see beyond the surface and pick up that elusive quality of soul that he was trying to express - not until this approach had gone mainstream in which case the message would already be watered down by people's preconceptions. I guess in this instance, the work and/or artistic movement becomes a question of taste rather than soul. Raw art/Outsider art does of course sometimes have similar qualities to that of Gauguin's work, and some people are clearly able to perceive it. There is however also some rather bad raw art out there that is hailed as good. This could have something to do with agendas, as mainstreaming always brings with it a lot of mutual back patting and pleading for money. In any case, we have gone a long way since Gauguin and his work and there is now some work out there that has different qualities of soul that also deserves to be noticed. This is the kind of work I'm talking about. The art world is ostensibly bad at telling good, soulful art from bad and soulless work. The truly perceptive art critics are still few and far between.

This doesn't mean to say that I think one should forget about the brain altogether. I do feel that the brain is secondary, that only heart/soul can understand heart/soul. Intuition is rapid for a reason, because it distinguishes qualities without the intrusion of the mind, and then the brain takes time to analyse the findings. Of course everything is interconnected. The problem is that people are so stuck in their heads and blinded by the veil of their mind - they can't see what is really there because of all their preconceptions. It's not about unlearning to think, it's about putting thoughts in their rightful places. Rational thought isn't everything, as science seems to believe.

A real change of heart regarding the true qualities in some art that is easily bypassed in today's world might encourage compassion from the viewer and instigate a real change of attitudes rather than just "well they are doing alright, aren't they". But I guess not enough people care to even begin thinking along these lines.

There should of course be an organisation that cares to support those who feel left on the dump with few means of getting their voices heard - perhaps confined to chronic illnesses alone, for instance (I do think the disability art scene is simply too diverse). That's without just being told to smile and do some redemptive and incredibly impossible heroic act that will finally gain everybody's admiration and applauses - while in fact it's a heroic act just to survive from day to day and create some kind of art in spite of a lot of pressure. (Cf. BBC's recent appeal for wheel chair user's who will play the part of a presumably rather stereotyped jolly cripple with a penchant for "positive thinking").

The one thing that really does need to be "forgiven" is the fact that many chronically ill people don't have the track record you'd expect from "proper" artists. If we can't work, we can also not easily collect lines on a CV. If you don't do the right kind of art you don't also get residencies and awards to put on your CV - and so on and so on.

I've seen plenty of schemes for people with learning disabilities (there's a lot about...), and they aren't attempting to make these people create conceptual art! There is also a fad for outsider art that accepts that it's a certain way. The world of outsider art isn't quite right for many disabled artists though, because we all know it tends towards the work of very introverted people with psychiatric disorders. The kind of art they produce is attractive to the art world because it tends to be instinctive and has an aura of innocence and play. If you're marginalised and in that sense an outsider, but not mentally challenged in any other way than being cognitively impaired as a consequence of your physical illness, then you can't make that sort of art. You're basically stuck in a no man's land where no one is interested in supporting and encouraging you. You are confined to fiddling with the materials you can afford and that you have the energy to master. You can only do work that is as good as your ability to focus. I for one find it excruciatingly difficult to think of complicated ideas and plan how to execute them, to focus and get it right. In spite of my best intentions and the presence of a huge amount of meaning, the execution can suffer. I wish people could see beyond the flaws and imperfections towards what I am really communicating. However, no one cares to look that far. They are not interested. So why am I doing it, alone in a vacuum? Because it is the only work I can manage and because I don't want to cut my creativity off. That would literally mean cutting off the very life force that keeps me going. Though really it's killing me too.

The fact I didn't get into Shape of all places just got to me, it really was the last straw (I did get in last year). I should never have hopes for a positive result. Of course we would all like to know why we failed to please the people who are in charge of our success - and the art world remains mute. Boy do I hate this situation. It's like I can now imagine the sort of work they have probably gone for, I mean there is supposed to be a mask made of meat... well that is simple. It's simple to take in. I don't normally do simple in that sort of way. People think that what I've done in the past is aesthetically pleasing, and maybe quaint, but they don't get that it's trying to say something. I'm not saying it's fantastic art, because I'm really not as innovative and clever as many other people. I don't care very much about visualising simple concepts, random ideas and comments or reactions to social issues. I'm more interested in the spiritual dimension of our lives here on Earth, about the survival of the self rather than how this self is presented to the outside world. The fundamentals. I just wanted to communicate some of my feelings to ordinary people, but I don't have such an audience now. I never really cared for accolades of the elite, but here I am, feeling I have to fight for them after all. What is this vortex we are being sucked into? Perhaps the comparative simplicity and isolation of my life in Finland was a blessing... However, I'm sure I'll figure this one out somehow. Sooner or later. It's just another one of those impossible riddles of my life. I think maybe my art really is pretty rubbish and this is what I should realise - after all, who am to say that other people are wrong?

Having said all this, what do I really know about the world of disability arts, I've only been here for 4+ years attempting to work it out? Perhaps it all makes perfect sense to a lot of people out there, and who am I to criticise that?

Since writing all this, I was pointed once again to this article about disability arts, which I've reread to refresh my mind. Please go and read it if you want to know more.

Disability Art philosophy is based upon legitimating the experience of disabled people as equal within art and all other cultural practices; not as an equal opportunities issue but as part of a process of re-presenting a more accurate picture of society, life, disability and impairment and art itself. Disability Art is a challenge to, an undermining of (as a minimum), traditional aesthetic and social values. Disability Art is a virtually a sociology of the art of society, art exploring its own disabling practices and processes – coming out of post-1960s liberal ideas of social and material constructivism. Disability Art utilises the social model of disability (and society) to explore disability (not impairment per se) and society through arts practice and culture as a collective and individual experience of socio-economic exclusion in a society that is marginalising, demeaning and exploitative of the images and experience of disabled people. (Dr Paul A. Darke)

In the end the fact that disabled people with serious chronic illnesses will not get their voice heard is no doubt because they are too ill to stand up for themselves. This is obviously not the case with other minorities.  The desire amongst many disabled to fit in with existing cultural structures, and the desire of mainstream society to want to normalise those who are different, is in fact killing all the aspirations of Disability Arts to introduce challenging ideas and new perspectives.

Consequently, current practices, and processes, actually does nothing for disabled people per se but only serves to create a situation where the more normalised disabled people will not be as excluded as they were before, superficially. Most disabled people will increasingly be denied their basic human right: the right to life. The normalised disabled person will increasingly be used as a tool of legitimacy to marginalise or dehumanise others within the disabled community. (Dr Paul A. Drake)

I also entered a free international competition, Big-i, for disabled artist based in Japan. I didn't really understand how it was all supposed to work because my attention span is often very short. I had a good feeling about it all, but that was an illusion, as I was just wanting something good to happen for once. Turned out that there was a first selection based on printed photographs, then another one based on the actual work which I had to spend a lot of money sending all the way to Japan. That's after the shock of having our printer break down after the selected photograph had been printed, so I had to send a print that I wasn't 100% happy with. One of my pieces was returned to me - fair enough, they didn't think it was any good. However, I had to pay import duty because it hadn't been marked as "returned goods". A piece of advice - always remember to ask the galleries outside of the EU to mark your work this way upon returning. The other piece, a photograph, received an "honourable mention" which allows it to be in just one exhibition at the disability arts centre for seven days! It is not going on tour around Japan like all the award winners and runners up. By the time I found this out, I was just feeling extreme exhaustion. What is the bloody point?? 

This I wrote about the photograph "Entity" shown in Japan for seven days:

"The power of observation brings about a mindset apart from the normal attraction to that which is pleasant and beautiful. Through abstract photography, I wish to highlight the raw texture and imperfection of our lives, and point to the beauty found in the most unlikely places. Interesting patterns and texture can be found in the things that people have thrown away or abandoned. 

To me, the compelling beauty of decaying surfaces and evocative patterns echo the beauty found in bodies that don’t meet with the norms and expectations of an over-sanitised society. In this photograph, I have captured something that gives the impression of a living entity, yet the fact that the entity’s body isn’t fully formed and perfect functions as a metaphor of the kind of bodies many disabled people live with. Just as I have to look for beauty in dumpsters and other other places with old and decaying elements, humans should become more aware of the beauty in decrepit bodies and perceive the beauty of the souls that inhabit them.

I believe that one of the purposes of art is to awaken curiosity, and that feeling intrigued by a sense of recognition is fundamental to humans and therefore of the greatest importance. Out of this comes a sense of sharing, which builds bridges and supports us in our lonesome journey on Earth."

Post Scriptum: You can read Disability Arts Online editor Colin Hambrook's summary of the discussion my blog raised in the Facebook group here.

"I GOT LIFE" - A FILM ABOUT WAR MENTALITY AND STRESS

Still from "I Got Life", copyright by Vivi-Mari Carpelan 2014

This was another fiddly project to finish, lots of technical issues that stretched this project over a period of a couple of months rather than weeks. I have vowed never to make anything similar again with somewhat unsophisticated software! I wanted to create something ironic around the song "I Got Life" from the musical "Hair" (1967) and then decided to combine it with my latest sound piece, "A Long Way to Heaven", mostly based on machine sounds that represent the mechanised, industrialised aspects of our lives that we have clearly not yet come to terms with. At the time, I was losing a lot of hair and ended up cutting it all off. Hair is, of course, a strong symbol of individuality, confidence and strength. I also didn't feel I had much life to speak of, as my condition and the insomnia was getting the better of me.

I decided to make an emotional film about the modern age conundrum of surviving inhuman amounts of stress. I used some footage of my own to express feelings of stress in our modern lives, yet mostly looked back to old footage of WWI and WWII, for an authentic document of war related stress. Since I have no way of using modern war footage, this was a self-evident choice that also fits in with the 2014 commemoration of the Great War. There is an obvious correlation between day-to-day stress in modern times and war related stress. Stress affects most of us in one way or another.

Stills from "I Got Life" copyright Vivi-Mari Carpelan 2014

Warfare defines our life on Earth. The war mongering mentality that gives rise to this regrettable fact pervades all of society and poisons every aspect of the human life experience. There is nowhere to escape from the feeling of being targeted, chased, threatened and hunted down. The unconscious stress reactions that follow aren’t confined to the battle field or the besieged city, but arise everywhere and anywhere throughout our lives. The majority of illnesses are generated by stress, and over time, they are increasingly likely to become chronic. It isn’t just our immediate physical survival that is at stake, it’s also the body’s ability to sustain life in the long term. The mental and emotional repercussions are disastrous and the survival of the authentic self is eventually also at stake. Severe disability will no doubt soon become the norm within the framework of society as we know it today.

In the film “I Got Life”, war is presented as a fact as well as a metaphor for a stressful life that has undertones of constant warfare. Life has become a traumatic struggle to manage the invisible forces that manipulate our bodies and mind, and the joy of being alive is gone. Moreover, when humans do break down from the effects of chronic stress, society is quick to jump on more guns to finish off the ones they consider weak and useless. The irony is that it’s often the shallow and dull individuals who are able to withstand stress the best. Are these the people who should lead our world?

“I Got Life” is based on old footage from the World War I and World War II, as well as footage of myself as the civilian narrator. The circular shape is indicative of the feeling of being targeted. The black and white, as well as negative effect, underline the timelessness and starkness of the affects. The film has been constructed around a sound collage I made called “A Long Way to Heaven”. It features machine sounds, radio sounds from the Cold War and other war related sounds. I performed the song “I Got Life” from the musical “Hair” from 1967 and added it to the track. It was sung on a day I felt quite tired in the same tempo as the song in the 1979 film version. As it is fast and quite a tongue twister, it makes the performance sound shallow and panicky. At the time, the musical was a radical criticism of religion and warfare that met with a lot of resistance until entering pop culture for good. By using this highly energised song about the good things in life in the context of stress and war I was hoping to further reinforce the sense of irony and how difficult it is for severely exhausted and ill people to feel that joy of having a body and being alive. Yet this should surely be everyone’s birthright?

THE CASE OF THE STRUGGLING BRAIN

Vivi-Mari Carpelan: "My Lovely Brain"
Mixed media collage, copyright 2013.

My latest collage was tricky, it took me quite a while to decide how to express the idea of pressure on the brain. The process was quite tentative and experimental. I scanned loads and loads of images to use and ended up using only very few of them. In the end I chose this strange machine that has a sense of mystery and surrealism to it. It conveys the idea of constant pressure on the brain. The image of the brain is really a map, which underlines the idea of "the map rather than the territory" with the sign X all over it to mark the spots. The X's denote the areas that are troubled, which is basically all of it. The sketchy and inaccurate nature of this old map of the brain reflects the way I see my own brain, i.e. without much knowledge of its actual anatomy. I wanted to address the brain as I've been thinking quite a lot about how this solitary organ, that almost appears to be floating in space, has to manage the rest of the body, and ultimately is the one that takes the blow when life is overwhelming, sensory input isn't processed properly, and sleep isn't restorative. The case of "the map rather than the territory" also highlights the fact that although the brain appears to be the organ that's the closest to our sense of self, it's still an object. I don't believe that the seat of consciousness is in the brain as Dr. Dennet would have it. But unlike in the case of problems with most other organs, if we're brain dead or the brain is severely malfunctioning, we're no longer of any use in this realm.

I wanted to try out the use of crackle glaze so that's what constitutes the ground in this image. The portrayal of a landscape was something that I hadn't planned, but just happened as I was going along. I wanted to underline the sense of illness of the brain, so I added the sickly yellow colour at the very end, holding my breath while I was hoping it wouldn't ruin the image. 

At the core is the rose, symbolising what is still beautiful about my brain and cognition in general, as well as the compassion I have for a part of my body that's struggling to cope with sleep deprivation and medication.

Making it all straight and lined up is difficult for me, I do try very hard but somehow there's always some alignment I manage to screw up. I think in my case the imperfections are part of the work and who I am, and shouldn't be seen as shortcomings. It's not easy for me to accept that there's always something not quite right, but on the other hand imperfection is part of being human and therefore has a place in  the grand scheme of things. Everything these days tends towards the glossy, highly perfected and sanitized... I really want to stay out of that myself. So therefore I continue to try and work by hand, as long as I can. Ultimately, because I'm not able-bodied, my abilities will never be perfect. Human imperfection is something that those who represent the norms of society need to tackle. I speak for everyone out there who has had to concede that they are disabled in comparison with most people who are able to participate actively in society. Not until society embraces its disabled organs, can it become whole.

I have one more image about invisbile illness in mind. After that I think I probably want to change gear and work on a slightly different note. At some point I just have to concede that I have enough images about difficulties and now is the time to look for answers. There is, of course, no guarantee that I can think of solutions in this regard. I mean that expressing solutions to the questions and problems raised through Project X simply may not be possible. We shall see.

One more thing... I few weeks ago I hastily applied for a year long residency for disabled artists at a University just before the deadline. It really was a bit of a tester, and I didn't really expect to get it. I tried not to worry about it too much. I didn't even have time to consider whether I would be able to do such a thing or not. It would have involved spending two days a week on location. In retrospect, I think it's something I might have been able to do, because there was quite a lot of money involved that would have made it possible for me to make it all quite comfortable for myself (easy train rides, nice stays overnight and so on). Getting out there would have picked me up quite a bit. But competition is fierce and some people just know how to apply. They also have track records. Whether their art is really interesting and meaningful is questionable - I don't mean to say it isn't, just that I would probably think very differently from the way the judges view these things. My kind of art still seems to fall outside of neat categories. 

In spite of my intention not to care, the rejection made me feel very discouraged and prepared to give up art, I cried a bit, and then got over it. Recently, I have been thinking about how I could use my own disheartening experiences to help others like me... if I had the resources. It's interesting to ponder, what group of people I would like to support because no one else does, or you end up in a peer group that isn't quite right for you.

GENTLE PERSUASION TO ACCEPT THE INEVITABLE

Vivi-Mari Carpelan: "Gentle Persusasion", 29x29 cm -
artist's photographs, digitally manipulated image,
velvet and gold ribbon, bead.
Copyright 2013

Some more new work has been finished so that I can feel that I'm also doing real things in the real work and not only digital work! It may not be immediately obvious but this one is meant to be part of the solutions when challenged with invisible illness - Project X is about the actual problem but I also meant to get on with finding a way of expressing some form of solutions. I wasn't planning on it this time, it just happened. I was attracted to the woman of the fin de siecle (c. 1900), gently gazing at a skull as was rather typical of the time of the Symbolist movement. Pondering mortality and all that... it's a bit ironic since it's actually an image that was meant to be erotic, on the other hand they were often seen as two sides of the same coin, the drive towards procreation versus the end of all earth bound drives.

I thought this one would be easy to scan but in fact it proved very hard to get the hue right, and the golden ribbon doesn't show up the way it does in reality. We're running out of laser ink cartridges and our artistic venture wowlookwhatigot didn't quite generate enough for a second hand ink jet printer as well as cartridges... we'll se how that goes (you can still support us if you like). It's a bother and a great shame but for the moment I just have to try and use what I have.

I would like for this image to be one that one can contemplate rather than analyse with the tools of a sharp intellect. There's pain, there's hardship, there's a kind of imprisonment... but there is also a kind of resignation that borders on acceptance. The velvet and the gold are meant to envelop the vulnerable character, and the very cheap "diamond" on the skull bears a gentle reference to Damien Hirst's famous work, "For the Love of God" in which real diamonds obtain questionable value... It also refers to the idea of the third eye, which signifies intuition and profound insight. There is a theatricality in this image which is not uncommon in my work. It points to the idea of "the world as a stage and the men and women as merely players". The photograph in the background is my own. There are large footsteps in the snow - I leave it to you to imagine what they could stand for. Life is hard but sometimes it's the most challenged people in this world who are "the golden people", and I like to believe it's all for a good reason. Controlling your life or fighting your destiny isn't what life is about. The toughest challenges can engender the most wisdom, but there is also a great deal of wisdom in the art of letting go of your own petty concerns at least intermittently, and to bear your destiny with dignity.

The theatre of life is the great play of Lila as suggested in non-dualist schools of Hinduism. Brahman is the Ultimate Creator. Freedom from necessity doesn't mean there is no "destiny", but this destiny is relative, while the play of lila is absolute.

"Brahman is full of all perfections. And to say that Brahman has some purpose in creating the world will mean that it wants to attain through the process of creation something which it has not. And that is impossible. Hence, there can be no purpose of Brahman in creating the world. The world is a mere spontaneous creation of Brahman. It is a Lila, or sport, of Brahman. It is created out of Bliss, by Bliss and for Bliss. Lila indicates a spontaneous sportive activity of Brahman as distinguished from a self-conscious volitional effort. The concept of Lila signifies freedom as distinguished from necessity."

—Ram Shanker Misra, The Integral Advaitism of Sri Aurobindo (from Wikipedia)

EAT, DRINK AND BE MERRY FOR TOMORROW YOU WON'T DIE

Vivi-Mari Carpelan: "Be Merry for You Won't Die", 60x45cm copyright 2012 

It's time to publicize my recent piece in the series "Project X". I expect to use the cross in all images as the leading thread. Here, I ideas related to fibromyalgia developed. When your tender points are being tested and you're given a diagnosis, very often the doctor will tell you that you have very little to worry about since you won't die from it (the papers have "it won't kill you" spelled onto them). This is a stupid cliche that should be banned. What someone afflicted with this condition has in front of them is a life time of pain, fatigue, insomnia and a general insecurity about the future and how they will be able to cope with life's challenges. Initially, it was going to be a piece about the fallacy of excess positive thinking but this is what evolved instead. Your life, your future, is crossed out, you may try and take a positive stand (and of course you should try your best in this regard) but you are still going to remain in the realm of the unknown and stand on unstable ground, sometimes flattened by the weight of your ailment. 

Medicine, symbolized by serpents, is of no use, of course. One serpent is dead and the other is an imaginary sea creature, perhaps also a symbol of the unconscious and the realm of emotions. Flies and mosquitoes symbolize the irritation and being kept awake that is connected to insomnia. In the early days of the discovery of this condition and others such as ME, people were often told it was only in their head - and of course this happens still today, especially in regards to insomnia. 

The row of black windows indicate the people who don't look, don't see, and don't understand. Black lace could be a sign of mourning but also that the ugly truth is often covered up with a nicer idea of reality.

RELEASING TWO PIECES OF ART FOR "PROJECT X"

Vivi-Mari Carpelan: "Affected by X I (1/2)", copyright 2012

Vivi-Mari Carpelan: "Fragmented by X II (1/2)", copyright 2012

So... after a considerable amount of scanning, fixing flaws on the scans, and stitching all together, I am now ready to release these two recent collages into the world... Having said that, the process was made easier by the fact that I got a scanner for free from Freecycle that is about as good as the old one but is compatible with my reasonably new laptop! It's not a flat one like the really crappy one we tried a year ago. It needs to have space for some depth of field. The only thing is that my laptop is starting to have problems with big files. It's constantly freezing up and it's driving me up the wall... 

I wrote some about the first piece in a previous blog post. The the two pieces, which are two aspects of the affliction with X, feature photos of myself, photos I've taken of the Finnish winter by the Baltic Sea, some medical reports from Finland about my condition and pages from my diary. The pieces is about strength and weakness. The black garments represent the affected areas. The medallion "wallpaper" is as usual a symbol of "cover up", but the cover up is always as elegant as possible so as to counteract what really goes on beneath the surface (pain, fatigue, despair, hopelessness, discomfort, negative body image, etc).

In the first piece, "Affected by X", I'm talking about the dual, conflicting aspects of invisible illness.

Firstly, I think it's quite clear that the condition is not very obvious in these photographs though it's physically present and possible to detect. There is something not revealed as I am partially covered up in black fabric. Not only is it the affliction not obvious, but I also don't really want it to be obvious. Perhaps life would be easier in some ways if people could see what was wrong. On the other hand, most people instinctively strive towards blending in with other people, and not standing out as abnormal. The first conflict is thus the one where a person wishes acknowledgement that they are not up to living a normal life, yet also choose to hide it as much as possible for fear of becoming an outcast, "thrown on the dump". 

The second paradox is that while one is sometimes obliged to give in to one's weaknesses so that one can pace oneself and not overdo the chores of daily life, one often also develops stubbornness and strength of character. Personally, I have always fought the humiliating state of being a weak individual and so the two upper images portray my attitudes of defiance, dignity and fighting spirit. 

Thirdly, there are medical reports that portray the various aspects of illness in an objective, detached way, which is in obvious contrast to the subjective experience of it. These two portrayals may be equally true yet not truly compatible.

The fact is, many areas of the body are affected but not all of them, or only very little. The head and the eyes are definitely areas linked with cognitive difficulties, but the idea of not seeing is also symbolic of inability to perform or the inability of being able to predict what the next moment or next day has in store. Living with such a condition enhances a lack of basic security, and even more so as medicine is of very little help. 

The second piece, "Fragmented by X", is first and foremost about creativity. Creativity helps you find solutions in every day life but can also help analyse problems and set the straight, as well as offer an outlet for frustration. The pages from my diary radiate outwards like rays of a sun. They talk about how I was frequently feeling, where I would go to sit on the cliffs by the sea in order to be inspired, but also about solutions and ways of enhancing creativity in a more theoretical light. On the other hand, entropy seems to be lurking around every corner. The drawings portray men and women whose bodies express fatigue and despair. The phrases that surround them are various complaints that people express in their heads or out loud. The reason these are in Swedish is because I feel I can connect with these ways of expression in a way I can't in English. They express things such as "I'm of no use", "I'm a loser", "I can't go on", "It's hopeless", "I'm so fucking tired", "I wish I was dead", "no one can help me", "goddammit", etc. When I was thinking of various exclamations and general complaints I actually started to feel really bogged down. This is how powerful negative words can be. So in this piece there is the positive strife for a more constructive and creative way of life, and the eternal struggle not to fall prey to hopelessness and despair.

The pieces, which are structured around the X, talk about my background through photos of the Finnish winter; the solitude of the shoreline, the rather harsh climate and the generally speaking rather unemotional environment. Still, it's also an environment that fosters what we call "sisu", i.e. a form of power of will and tenacity that is often considered peculiar to the Finnish. I feel that I can get away from it all in Finnish nature in a way that is not possible in the UK. The other aspect of my identity is the fact that the words are in Swedish. In my next piece, there will be words in English because that particular aspect of my life is one I tend to express in English. Underneath it all, there is a wish to consolidate the various aspects of my identity as I tend to feel rootless and insecure.

They are fairly large pieces and it was as usual very hard for me to focus and get it right. I had to do a lot on the computer, which is tiring, and then cut things very neatly, which is nowadays very difficult as one has to be able to focus well and have very steady hands. I know the handmade aspect shows, but crafting my collages by hand is one of those things that I don't want to give up because I feel that it adds emotional value to them.

POST SCRIPTUM: After some contemplation I have arrived at this summary about the two pieces:

The two pieces form a diptych about the fight against fragmentation of the body and mind. It's is part of a larger project called "Project X", an attempt to make invisible illness visible. X stands for many things, among others "crossing out" and "marking a spot" - here it often denotes an ailment unknown to the viewer. The two images feature photos of myself posing with black garments covering the afflicted areas and unable to see how my life might unfold due to the condition. There are photos I've taken of the Finnish winter by the Baltic Sea (the harsh climate is partly a source of the strength of will typical of people of the North - there is a paradox in that snow symbolizes emotional coldness but can also have a comforting quality), some coldly objective medical reports from Finland about my condition that contrast with my subjective experience, and pages from my diary. The "wallpaper" is a symbol typical in my art, as it represents "cover up".

The first image is about external strength and weakness, the second piece about internal ditto and more specifically about creativity that radiates from the centre. The grids represent the attempt to hold everything together in the face of the pertinent entropy and fragmentation that threatens the afflicted person on a daily basis.  The pieces also speak of a complicated kind of eternal cultural identity crisis and problem with belonging - this is represented by the presence of text in Finnish and Swedish, and the shape of the pieces are reminiscent of the Finnish and the British flags. For instance phrases that surround the drawn characters burdened with fatigue are various complaints that people express in their heads or out loud. They are in my mother tongue Swedish because I feel I can connect with these ways of expression in a way I cannot in English. They express feelings such as "I'm a loser", "I can't go on", "It's hopeless", "I'm so fucking tired", "I wish I was dead", etc. As I was thinking of various exclamations and general complaints I actually started to feel really bogged down - such is the power of negative thought.

'There is something not revealed as I am partially covered up in black fabric. Not only is it the affliction not obvious, but I also don't really want it to be obvious.'

Ultimately, I am on a journey of discovery - is it always possible to triumph over adversity? The challenges of my life have been many, and often I was faced by problems that seemed impossible to disentangle. Very often I did it nonetheless. I want to see if there is a way in which disability not only teaches us about humility, compassion and the value of diversity, but also has a place in a human life that would be lacking in intrinsic value if it was too perfect.