19 November 2008
A reflection on the experience of isolation
Alan Scott was a photographer, printmaker, writer and raconteur with a love of philosophy and a wealth of understanding and knowledge. Sadly, he died on Thursday 16 October, aged 57 years.
Here DAO reproduces a heartfelt plea considering the universal need for recognition, written by Alan at a time when he had exhibited various pieces of work and was looking for opportunities to develop his artistic practice.
First they came for the Communists, and I didn’t speak up, because I wasn’t a Communist. Then they came for the Jews, and I didn’t speak up, because I wasn’t a Jew. Then they came for the Catholics, and I didn’t speak up, because I was a Protestant. Then they came for me, and by that time there was no one left to speak up for me. Rev. Martin Niemoller
So reads Neimoller's famous statement, on his release from prison camp after the Second World War. What strikes me about it now is not his courage or the sheer self-knowledge that it reveals. It is that he talks about what to him seemed a series of others: they, them, Communists, Jews, Catholics ... people he was not one of. Until at the very end he realises that unless we are all one, all a sort of very large us, in a place and time like the Third Reich we can all be taken away a few at a time.*
There can be no oppression without separation. There can be no separation without isolation.
I first really realised just how much connection was my lifeblood when I realised I was living without it: when I first had to face really living with chronic illness. When I realised I wasn't going to get better. When I first began not to have an answer to the question 'How are you doing?' that anyone could stand to listen to. When I asked for help and support and didn't get it.
It is true, I did not dare to ask for very much. I feared losing what I had, if I asked for what I really needed. But I did not even get what I asked for. I asked what counsellors I had, and they largely withdrew and kept themselves separate. Or they found some way of distancing themselves by blaming or ignoring me, or just forgetting what I said. The one who did make a serious attempt at understanding what was going on for me, and did something about it, was a Jewish man. I find this interesting.
People who weren't counsellors retreated even more. They did not know how to include me, or to help out. I had done the same myself not long before. I met a counsellor who had a chronic illness. I looked it up, and found out quite a lot about what it was doing to her. Then I got embarrassed and did not show her that I had cared enough to find out what she might be enduring, and if I could help. I too, had stepped back. Somewhere inside, I did not think I could really matter enough to make a difference.
So I learned to cope without help. I learned to live with more isolation than I had ever noticed in my life. It was the most painful event of my adult life. A whole, new oppression that I had to survive, along with the illness itself and a life-or-death struggle with the medical system. The question 'what do you need, Alan' has become very interesting lately.
What do you need ... to get to a workshop ... for the world to be a better place for you ... Much has improved since my earliest struggles, yet somehow what they provide is not what I really need. Such help would once have seemed overwhelmingly wonderful. It is certainly a big improvement, but it is not quite the answer I am looking for.
What I really need is for everyone from my general culture to notice that they are really alive, to notice what their own real needs are, to notice that we all really exist. To notice what we put ourselves through daily, how we treat ourselves to get by under capitalism, how we try to survive, and in particular how we treat ourselves when we are not well. And how we feel about treating ourselves well, and asking to be treated well, at times like this. To notice that we are all really human, and just how much humans really matter to each other.
When this happens, or even just begins to happen, then my needs, and the needs of every person with a chronic illness or disability will naturally and easily be noticed and taken care of without struggle. Or they will begin to be taken care of. And at that point there will be no need for me to say anything else: this Draft Policy will end here.
*Niemoller does not mention an estimated 300,000 disabled and chronically ill, but I am sure by then he was aware of us, too.