A STRAIGHTFORWARD COLLAGE ABOUT DISILLUSIONMENT AND INDIFFERENCE

Vivi-Mari Carpelan: "Your Indifference is Breaking my Heart", 55x38 cm, copyright 2012

This is my latest handmade collage for "Project X". In this one, I have as usual used a photo of myself. The background consists of pages from a book from about 1900 of poetry in the English language, it's a section of poetry that is "didactic and moral". Basically it's a lot of high flown, flowery words without much sincerity, the typical moralist "pointing fingers" in very explicit ways that was common in poetry of the 19th and 18th C - it's trying to teach us something about life, often in a rather self-righteous and shallow way. Yet it is still echoed in the way many people talk today when they try and advice you about how you should lead your life. It's easy to tell others how they should live but much harder to act accordingly. This is one of the basic truths about the human condition. It's typical that those who pretend to be spiritually minded in some way give themselves away by babbling too much. I think a certain reticence and control over the faculty of speech can be the sign of a greater spiritual mind. 

I wanted this image to be a direct confrontation with the viewer. It's you and me - alright? This is personal. I thought we were supposed to be in the same boat? Why are you indifferent? I want to know. Why have you closed off and decided that you don't need to be empathic and interested in people who are the so-called weaker members of society and that they should just pull themselves together? Why are you not helping to instigate laws that make us all truly equal in the deepest possible sense, where anyone who isn't out there with the intent of hurting others should be treated with respect and seen as a person worthy of a dignified life regardless of their ability to "contribute" to society? All of you out there, who don't notice my struggle to survive within the frame of this society, or care about anyone else in a similar, marginalized situation - you all break my heart. 

“This is personal. It's about you and me. Look me in the eye and tell me you really don't care that I'm not as able bodied as yourself. Look me in the eye and stop giving me all that moral bullshit about taking responsibility for my own health. I am. You have no idea to which degree I'm struggling to manage. But I can't do it alone. I can't do it without your help. Ultimately, society is the cause of my condition. You didn't realise that, did you? We're all in it together, whether you like it or not. Please, can't you see that? Your indifference is breaking my heart.”

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!

THE ETHICS OF DISABILITY AND OUTSIDER ART

"The Vocation", copyright Vivi-Mari Carpelan 2008

Today I am really knackered. It has been a busy time with very bad sleep. However, I feel that I have really advanced on some important practical levels. I have talked to several nice people who are involved in the disability arts in Wales. It seems that nowadays, outsider art is defined as being art by anyone who is marginalized by society. Unfortunately, I'm not sure I fit the bill since I have some training and work professionally as an artist. The idea of outside art is namely to bring out "talent in the rough" amongst those who don't have much education and sophistication. However, I do have a disability so surely I fit into some kind of niche somewhere.

The main thing is that the messages I wish to bring out through my art have become much clearer in my mind, and I feel that I am gradually able to get them across to other people too. For a long time I felt quite scattered and lost in regards to my art, and what I could say that might get a wider audience interested in more than just the aesthetic value of my artistic products.

For most of my life, I struggled to keep up with other people and didn't particularly want to be seen as disabled. Instinctively, and even due to practical experience, you know that disability isn't received very well by most people. In some ways I am sure that pretending that I was doing better than I really was has been helpful, because it made me feel more worthwhile. There are images you can create in your mind that will be empowering. Some people have made it their mission to bring awareness to our ability to visualize in order to feel better about ourselves and our situation, but I never liked following other people's advice in this regard. I guess I'm a bit stubborn and I always figured I'd find my own way. I do beat myself up when I don't do too well though. Since I've been married I've seen myself fall into a whiny mode of martyrdom and victim hood far too many times. While I believe it is probably quite normal when you're not feeling well and your energies are low, but it doesn't make you feel any less guilt ridden. 

A few weeks ago we saw an exhibition with art by South Asian people, namely from India and Pakistan. When we left the venue, Martin said oh well, it's always the same story. "Whine, whine, poor me I am such an outsider in this society...". It's an easy way of making art, isn't it, he said. Complain through your art, there is bound to be somebody who gets a guilt trip or feels sorry for you. I thought to myself, that there is indeed a great danger in slipping into the victim mode and using it to your advantage. The problem is, you are not doing yourself the favour you may think you are. Of course, I am in this country of my own free will, so it's probably easier for me to have a positive attitude towards integration. But the truth is, I have many varied issues of feeling marginalized as I don't really know where I truly belong, how to adapt to my past (Finnishness) and my future (Britishness), nor how I can best work and contribute in my own way at my own pace in a new environment, as a person with a disability.

Don't get me wrong, I complain as well. Many people in Finland know that I have put myself out there, not least by complaining officially on the radio. I also have a blog in which I have recorded all the social injustice I have witnessed in my own life. But in the end there is a fine line between wallowing in self-pity, complaining about all that is bad, and just observing and stating a fact. I'm not entirely sure where the lines are, and I think often you have a little bit of everything in your cocktail. But I do know that I cannot state facts without a certain amount of emotional involvement. For instance, both Martin and I reacted to the colouring book for children about the terrorist attacks during 9/11 that an American publisher has recently published. We both thought, wow that would make a good artistic project. I was absolutely fuming at the very thought of offering such propaganda to innocent kids who will never understand what it's really about. The publisher obviously thinks they are educating the children about what really happened, but kids cannot comprehend it. It will only sow more seeds of hatred and "us against them". All that crap. 

Anyway, the point is that somehow you need to try and make art that doesn't put other people off. It's very easy to make others feel guilty or uncomfortable by being too confrontational and blaming everybody else for your rotten situation. I want to say things the way they really are - I think I'm well equipped for this as I'm Finnish... but I want people to actually want to engage in my work and not dismiss it because they are not obliged to have a second look. You cannot force others to feel sympathy. This is especially true today when a lot of people are having a difficult time and the future is uncertain in so many ways. What you want to create is an atmosphere of sharing, because, as someone just pointed out, most of us are going to be afflicted with ill health and misfortunes at some point in our lives. We need to pull together and also see that the marginalized people in society may very well have something valuable to contribute even when it doesn't seem like it. The point is, you just don't know. Yes many disabled people are not contributing much, but they might be able to do more if they weren't pushed to try and keep up with the norms. Others may be gems among the pebbles, with real wisdom and insight to share with others. Life is not only about economic growth, in fact that ideal should probably be abolished.

We do need to think about the audience as well though. We often forget, that there are "normal" people out there who just don't know what it's like to be marginalized. They have never met such people before. Their natural inclination is to feel embarrassed and uncomfortable and turn a blind eye. I have to admit to my own embarrassment that I sometimes feel similarly when faced with people who don't fit the norm. And I am supposed to be an open minded and unprejudiced person... well I don't think anyone is, to be honest. We must be gentle with these people. My interest in Buddhism many moons ago comes to mind, especially the ideal of compassion. We need to find the line where we get our message across but also have compassion for those who are ignorant about marginalization. Where exactly would they have learnt about such things? Many people believe what they read in their daily journal of preference, and it may be a very thwarted view of reality. Many newspapers only support what prejudices people already have. Yes, sometimes you have to yell really hard to be heard. Believe me, I know what I'm talking about. I have been a fighter of my rights as a human being for a very long time and often felt very discouraged. Still - maybe it's especially through the arts that people can be shown a complex and troubled reality in a way that doesn't put them off. How can you get people to listen to you and make them feel positive and educated about what they hear at the same time? Keep going, don't give up. I'm sure every little helps.