Tuesday, May 15, 2012


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!

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