Art for Art’s Sake?

Here is my latest story.

I met Irena about a year and a half ago. She is a member of the choir that is part of the play called The Book of Judith. Now if there was ever another story, it’s about The Book of Judith which is a whole story in and of itself. There is a blog about this play which you can find at bookofjudithplay.blogspot.com.

We were in rehearsals for a tour that begins in St. Catharines in October. At this time Irena handed me a book of her poetry. My first quick glance revealed a melancholy tone. I will type in a short poem at the end of this posting.

I recognized of course that I ought to interview Irena for this series of stories and she jumped at the chance. I quickly realized that she and I will need to drink a few cups of coffee (or tea or beer) over the next while in order for me to capture the whole story, if that is even possible, but here is the beginning. My point is that like many people Irena has never really had the chance to talk about how being labelled disabled and being an ODSP recipient influences her personal path, and the opportunity was more than welcome to her.

Irena came to this country with her family from the former Soviet country of Morava. At the time she was a high school student. She was already writing poetry and stories but did not feel that it was her place to hope for a career of her own design. Instead she followed the path that her parents, in particular her mother, laid out for her.

At the age of 18 it was recommended to her that she become a recipient of ODSP. She obediently signed the paperwork. In her heart she questioned whether she really wanted to label herself as disabled but it was many years in the future until she would begin to formulate these questions in her mind.

A dozen years later, Irena wants to establish her career as a writer and she has self published a book of poems. She frequently produces other writing, but she has never seriously researched how writing might become a career. She confessed to me that being on ODSP has made her somewhat lazy. It’s true that it pays the rent and it provides sufficiently for her and her boyfriend to have been able to establish an independent household. However, it also prevents her from seriously looking for employment for exactly the same reasons a previous “Joan” pointed out. Dealing with the impact of a big cheque in one month will take several months of work with one’s Client Representative to reaffirm or re-establish one’s eligibility for the benefit. It becomes easier – at least in the moment – to earn a little bit here and there but never to truly step out into the employment world.

Irena questioned in a very quiet and indirect way whether the purpose of ODSP is truly just to firmly establish that one is disabled. It is a question that is difficult to articulate and easier to ignore. But truly is this young woman disabled? It is a fact that she walks with crutches and moves and talks slowly. It is apparent that she easily defers to more assertive people. But it is also true that she thinks and writes beautifully. If one is an artist, is recognized as an artist, and is capable of establishing an artistic career, where is the disability?

But then again, when has our culture ever recognized the making of art as a genuine economic contribution to our society? Clearly, it creates a more stable life for Irena to rely on a regular ODSP cheque as opposed to struggling for meagre grants and skimpy opportunities to sell her work as is required of artists who do not have the advantage of being born with Cerebral Palsy.

Here is an example of Irena’s writing:

The World Is…

The world is dark…
So dark it hurts
No such thing as true happiness,
We are primal;
Running like hamsters on a wheel of greed
Going nowhere…

We shock ourselves back into life,
Accept conformity,
Condone uniformity,
Alone.

Mind Boggled Again

Well, this is another story related to the Daily Bread Food Bank. I don’t mean to pick on them. This particular food bank is the source of an important resource to me at this time. We are related. But, it’s a very one sided relationship, it seems. I have not yet figured out a way that I can enter into a genuine dialogue with this complex and mysterious organization.

The context for me is that I have been bed ridden for a full month – October to November 3. Because some will be curious let me just say that I have succumbed to a complex set of reactions to medication, etc due to the fact I have been in quite a lot of pain for over a year.

One of the factors which is quite relevant to this story is that stress leads to pain leads to stress. For just over a year I have been learning, as readers of this blog know, to live on the ODSP benefit in a neighbourhood which initially was not of my choosing. This situation has been stressful and so is a factor in my current physical condition.

So, today, feeling a little bit stronger I went off to the food bank. I haven’t been there for over a month and my assistant and I were clearly missed by some of the regulars. That is kind of comforting in itself! I have often found over the years that I usually enjoy hanging out with poor and marginalized people partly cause their quirkiness eases any discomfort I might have about my own and partly because these people are very reliable sources of good information about where the real barriers are and what some of the tricks are.

This particular food bank has undergone a major reorganization in my absence. According to the signs it is intended to be a temporary change of operations. Pardon me, but I have my doubts!

The immediate obvious effect of this reorganization is that all the waiting patrons were crammed into a very tiny area and it would seem that there was only one person available to process the waiting people so that they would get their ticket and be able to move onto the food selection area. The food selection area has become nothing more than a line-up to hand out bags of food as there was no room available to lay out the selections as in the previous manner.

I never actually got to the point where somebody could hand me a couple of bags of food. I actually went to the food bank twice today and left empty handed both times. The first time I went I waited approximately 40 minutes and not even 1 person made it through from the waiting area to the food distribution area. The second time, the waiting line was even longer and I didn’t bother to try to get through.

Now I’m sure you realize that I have the luxury of deciding to not use the food bank this week. I have many friends and a full freezer because last week was my birthday and I was sick and lots and lots of people brought food. Today’s trip was more in an effort to broaden the selection of food available to me as much of what’s in the freezer is sweet stuff – not really suitable to my diabetic diet. Be that as it may I have the privilege of waiting till Friday to find out if the food bank has figured out how to process people more effectively.

My real message here is: “What is the point of processing people, at least under these difficult circumstances”. Everybody’s going to get exactly the same food selection in exactly the same two bags. The food that’s going to be there this week is there already. Out of the hundreds of people who will use this support this week surly not more than one or two would be nuts enough to line up more than once to get double their allotment for this week. What possible purpose can it serve to force dozens of people to wait for hours?

I hope you realize just what sort of people are waiting, and that you can get a sense of just how much stress can build up in this kind of situation. The gentleman who welcomed me to the line-up in the first place has all the physical signs of living with psychosis which is controlled by medication which gives him speech and body tics. Another person down the line is a mother with a 3 year old waiting without even a single toy to play with, surrounded by mainly single men. This is not an ideal situation by anybody’s stretch of the imagination for a young child. Others are among the classically unemployable, who wile away their time either sullenly sitting in silence or talking to each other about how such and such a training program never really led them to employable status, etc, etc.

A naïve observer would perhaps conclude that the main activity of poor people in our society is to wait. My heart aches for the 3 year old who is already becoming well acquainted with this job description.

I’m not actually the huge rabble rouser that I would like to be in this kind of situation. Today it was easy to see that all that was required was for someone to break through the line and start handing out bags to each person. Bag by bag, person by person, the waiting line would have been dispersed in less than 20 minutes with no harm done to anyone, especially the Ontario government. But I didn’t do it and neither did anyone else. We are after all good citizens of Ontario.

Just Something that Ticks Me Right Off!

Okay, so this isn’t a story about ODSP. I have been sick for about a month and it has not been a time when I have been interviewing people about their contributions. Just the same this story is in the same vein and it’s about how contribution is so frequently thwarted by all the tangential screw ups of the service system and the people who are trying to do “good”.

This particular “John” lives in a supported living service near the St. Lawrence Market area of Toronto. I met him approximately a year and a half ago when he first came to a visual arts program designed for people who have very limited use of their bodies and especially people who do not speak. John fits both of these criteria.

Even though John struggles to be understood, using a combination of pointing, grunting, smiling, head nodding, a voice producing machine, and a word book, it is clear that he has a remarkable amount of courage in regards to being out in the public and getting around. On more than one occasion he has arrived by subway and bus even though he was uncertain of the route and the overall trip would take him nearly two hours. He seems to be relatively comfortable getting people’s attention and simply letting them figure out what the problem is and solve it with him. In this way he gets himself from A to B.

Nevertheless John frequently does use Wheeltrans. After all this parallel transport is designed to be able to be booked on a regular basis to go to the same place at the same time each week, giving the user an accessible and reliable means of transportation to his or her choice of participation.

Or so you would think.

Laser Eagles, the art program, used to take place in an Etobicoke Community Health Centre. At the end of the summer we moved to a nearby drop in facility as the community room of the CHC was frequently booked during our time slot.

Now understand this. We are artists. Yet because of our inability to access other facilities usually used by artists – both physical and financial inaccessibility – for six years we have relied on weekly three hour slots booked in health service related rooms to do our painting. Thus our “disability” yet again outweighs our other characteristics. Imagine being an artist and having only three hours a week when you could do your work?

Be that as it may, John, and other artists who use Wheeltrans, have frequently had to wait another two hours for their return bus. The pick up time is 3pm but for the internally motivated, unobvious reasons known only to dispatchers (if even them) John’s bus is never reliable for his return trip. In case you think this is peculiar to John, there have been at least three artists in the last six years who have quit the program because they could not tolerate the unpredictable waits. Just so you really get the picture, some of these artists would be returning to their support service residences during rush hour, which would extend their trip by another hour, which would mean they would arrive home three hours later than expected, which would mean that they would not get their dinner meal. On more than one occasion a Laser Eagle volunteer has gone to feed somebody a meal.

When we moved to the drop in centre John’s bus suddenly became very unreliable again. This is a common tendency of Wheeltrans when you change your drop off and/or pick up address. The trouble is there is nobody around at the drop in centre on a regular basis from 3-5pm. So suddenly John was no longer welcome because the drop in centre cannot take responsibility for waiting with him, neither can they legally leave him alone, although he would be happy to wait by himself.

Now this is something that Laser Eagles can figure out. We’ve done it before. But this is not how the service system approaches a real problem. Rather than finding someone to wait with John it was announced that he should not come to the drop in centre. Fortunately John doesn’t get messages he doesn’t like and he showed up anyway today, and his return bus arrived on time – thank God.

I hope you get my point. When it comes to being labelled disabled there are innumerable barriers to contribution. John has thrived as an artist. Over a very short period of time he has gone from having his “tracker”, (a volunteer who supports the artist to produce his work), do all the brush handling to holding his canvas in his lap and using his brushes in his own hands. He has gone from using only paint-by-number canvases to designing his own scenarios. His current tracker is a young man who is deeply moved by the opportunity to support him to paint and figure out his transportation issues.

I get angry – hot under the collar – when such obvious effort and inspiration is thwarted and undervalued. In the mid seventies the province spent 21 million dollars to create Wheeltrans. It’s been spending millions ever since to keep up a poor and ineffective parallel service. Why can’t John and others like him have a public system that actually works? Is he not a member of the public? John would take the subway if any of the subway stations near the Laser Eagles location were accessible. Why not?