Pretty soon I have to deal with the fact that I have taken on more to do than I can possibly manage. I can hear Gloria saying (loudly!) “Give it away!” I feel like I have been giving stuff away but clearly there is some kind of exponential factor going on here. The more you give away the more you’ve got to give away. I guess that’s what abundance is all about.
Giving stuff away is also a dynamic process. The gift must be accepted. And then there’s that difficult space – at least for me – giving something away doesn’t necessarily mean I don’t want to take it back.
Yesterday gave me a good example of this. I have formed an informal partnership with two of my Wisdom City Team colleagues. One is an excellent networker and through her we got to interview David Tsibouchi, a former Cabinet Minister in the Conservative Provincial Government. Things were going well in my view and then this woman turned the conversation into “disability” and claimed that we don’t have an identity as the three of us together. Although this is true in a formal business way, we had already talked about how we have a common accomplishment as being team leaders in the production of the Wisdom course and have international accomplishments that we can lay claim to. Anyways, I had that moment of feeling that I was being left in an untenable position of, first of all, appearing to not know what I’m doing and secondly, being drawn back into the M Level disability conversation.
So what I’m saying is that I have given away unilateral control and suddenly want to snatch it back because it looks to me like the situation could only go in a wrong direction.
It seems like no matter how good I get at communicating who I am and what I want, not to mention what I have to offer, these things don’t get remembered or don’t get appreciated in a way that supports me to move the Inclusion action forward. Now I know that’s not strictly true, maybe not even sort of true – I’m just letting you know how it seems in a situation like that.
In other words I want to keep control over my own legacy. I don’t want to give it away even though that’s what needs to happen with any legacy. It’s a real pain in the ass to keep on hearing over and over again that I’m a leader in the disability world.
Actually I can name you at least half a dozen people who are leaders in the “disability” world who would flatly say that I’m not a leader in the “disability” world. I am actively excluded from many organizations and opportunities in that network. I don’t toe the party line, I’m not doing things that members do, and I’m not reliable to keep within the framework of that type of organization. I would exclude me if I were a leader among people who call themselves disabled.
Perhaps this is a mark that I am actually having an impact – one of those conversations I was having with myself when I was very sick in the hospital. On the one hand I am a hot potato among the people who are promoting a “disability” view of the world – on the other I am being recruited by people who think that Inclusion can be used as a leg up in the “disability” world. Such folks are going to be upset with me indeed!
It’s fascinating and puzzling to me that the ROM has gone to such great lengths to include me in their ponderous planning cycle. It is apparent that three or four key individuals went to bat energetically so that my exhibit would get established inside of 2011. Although I doubt that these people understand Inclusion the way I do – at least not yet – it is clear that they can see that I am offering something different and that I have a way of expressing that is concrete enough and clear enough for the general public to be able to get a flavour of it in a highly visual context.
For me this is a genuine achievement. Less than ten years ago I couldn’t get the words out of my own mouth – now I have an audience as well as enemies and followers, albeit some of those followers have little clue what it is they are following.
I feel I must explore what can be given away and what must be hung on to. It’s no good for me to try and do as much as I’m doing. Too much falls off the plate and I will eventually get too tired, although I’m remarkably feisty right now!
Showing posts with label government. Show all posts
Showing posts with label government. Show all posts
Saturday, February 5, 2011
Saturday, January 29, 2011
January 29, 2011
Gloria had a fabulous idea today. She suggests that I take all the entries I have made about the cranes, cubes and the prison which is rising before me and make them into one article and publish it – somewhere like The Globe and Mail.
I will do this, but not tonight.
The doing of this is related in a number of ways. First on my mind is to develop the capacity to be calm, courageous and to celebrate life in the midst of all that is life destroying, horrible and disgusting. My automatic response is to ignore or run away. Truly I want to do neither. I want to be able to continue to look out my window, to be a watcher as my Mother was, and to celebrate the fabulous variety of insignificant events that continue to emerge moment by moment just outside my bedroom window. I want to continue to love living in this odd neighbourhood, so close to the lake, so “underdeveloped”, so human. I want to paint the emergence of life around me. I do not want to stop seeing and I do not want to have to go away. These are ways of the past that I have been able to rise above. This is my personal legacy – to be able to be where I am and be who I am whether or not I am afraid.
From another perspective it is too simplistic and fundamentally not true to say that this prison building is wrong. It is very much not what I would choose, but this is not the same thing as being wrong. There are many dynamics that bring about the global economy that result in Texan prisoners building cubes for Ontario prisoners to assemble and live in. I would prefer that people make different choices, and organize themselves differently in the awesome, largely unconscious, effort to work together around the planet. Just the same, although the results of this effort seem so contrary to life and its affirmation, still it is life and living people that are bringing it about. I do not understand and perhaps understanding is not an adequate response or approach. However, in my not understanding I can still appreciate the awesomeness of what is beyond me and my capacity to understand.
I have spent most of my life in a conscious choice to make a difference that I call Inclusion. I feel that this choice, this calling, is in some kind of coordination with the eternal impulse that brings life to the world – often called God. The rising presence of a massive prison in my backyard – rising night by night as I sleep or don’t sleep in my bed – can it be accidental? And even if it is accidental is it not something to which I can respond? What is before me at this time is to discover the response that I can make that forwards the conversation called Inclusion because that is who I am.
If I write my life with a large brush then it seems that Camphill fell through and my finances fell apart so that I might end up in this bedroom looking out this window at the very time when this prison is being assembled. Of course, I could say the same thing about other elements of my life – for example, that Gabor turned against me so that Mike would come to fill the empty position, or that I would have to turn to ODSP so that I would be in a clear position to choose powerfully how I accept or do not accept the next plan from ACF, or that I would contract a life threatening infection and have five doctors deal with it ineffectively so that I might end up lying and looking out this window for nine weeks. I am sure that many would say that I am far too full of myself to write such a major role into my life script.
On another topic, tomorrow is the day that I set to choose if I am leaving for Savannah, or not, on February 12. It seems that we are about $4000 short of what it would take to pay Mike and another assistant separately from the CILT based fund for my personal assistance. The value of doing it this way, besides keeping the peace among myself, CILT and the Ministry of Health, is that I would recoup a large part of the overspending of this account that has happened in the last seven months.
Unfortunately, no such amount of money is forthcoming for all the usual reasons. It is certainly not for lack of looking for it, although I’m sure there are sources that I have not discovered or touched. For the last six weeks I have kept a chart with happy faces and stars to reinforce my efforts to find money. The chart has helped. I am now more than likely going to earn enough money each month this year to be able to pay back some of the ongoing debt I am in, and to travel to some important engagements like the Conference for Global Transformation in May. Just the same, the money for Savannah is not there today. Of course, it may show up tomorrow. It would be awesome!
What would I do in Savannah? Paint “Dirty Window” and have it ready for the ROM exhibit. (This is the painting of the rising prison.) Catch up on what’s been happening with people who are struggling to be economically included in the most racist place I have ever been. Re-immerse myself in an explicitly Christian environment that somehow moves me deeply. Hang out with pelicans during the month before all the tourists invade. Speak to people about what I have learned and questioned in the two years since I last spent time with them. Enjoy the car ride down and back – a time that always allows me to pull my thoughts together. Eat fabulous southern grits and BBQ and other foods rarely encountered in the cooler north. There is so much more that I can hardly imagine that three or even five weeks wouldn’t pass by in a flash.
But it seems, at least tonight, that I am not meant to go. Seemings can be wrong. I sure hope this one is!
I will do this, but not tonight.
The doing of this is related in a number of ways. First on my mind is to develop the capacity to be calm, courageous and to celebrate life in the midst of all that is life destroying, horrible and disgusting. My automatic response is to ignore or run away. Truly I want to do neither. I want to be able to continue to look out my window, to be a watcher as my Mother was, and to celebrate the fabulous variety of insignificant events that continue to emerge moment by moment just outside my bedroom window. I want to continue to love living in this odd neighbourhood, so close to the lake, so “underdeveloped”, so human. I want to paint the emergence of life around me. I do not want to stop seeing and I do not want to have to go away. These are ways of the past that I have been able to rise above. This is my personal legacy – to be able to be where I am and be who I am whether or not I am afraid.
From another perspective it is too simplistic and fundamentally not true to say that this prison building is wrong. It is very much not what I would choose, but this is not the same thing as being wrong. There are many dynamics that bring about the global economy that result in Texan prisoners building cubes for Ontario prisoners to assemble and live in. I would prefer that people make different choices, and organize themselves differently in the awesome, largely unconscious, effort to work together around the planet. Just the same, although the results of this effort seem so contrary to life and its affirmation, still it is life and living people that are bringing it about. I do not understand and perhaps understanding is not an adequate response or approach. However, in my not understanding I can still appreciate the awesomeness of what is beyond me and my capacity to understand.
I have spent most of my life in a conscious choice to make a difference that I call Inclusion. I feel that this choice, this calling, is in some kind of coordination with the eternal impulse that brings life to the world – often called God. The rising presence of a massive prison in my backyard – rising night by night as I sleep or don’t sleep in my bed – can it be accidental? And even if it is accidental is it not something to which I can respond? What is before me at this time is to discover the response that I can make that forwards the conversation called Inclusion because that is who I am.
If I write my life with a large brush then it seems that Camphill fell through and my finances fell apart so that I might end up in this bedroom looking out this window at the very time when this prison is being assembled. Of course, I could say the same thing about other elements of my life – for example, that Gabor turned against me so that Mike would come to fill the empty position, or that I would have to turn to ODSP so that I would be in a clear position to choose powerfully how I accept or do not accept the next plan from ACF, or that I would contract a life threatening infection and have five doctors deal with it ineffectively so that I might end up lying and looking out this window for nine weeks. I am sure that many would say that I am far too full of myself to write such a major role into my life script.
On another topic, tomorrow is the day that I set to choose if I am leaving for Savannah, or not, on February 12. It seems that we are about $4000 short of what it would take to pay Mike and another assistant separately from the CILT based fund for my personal assistance. The value of doing it this way, besides keeping the peace among myself, CILT and the Ministry of Health, is that I would recoup a large part of the overspending of this account that has happened in the last seven months.
Unfortunately, no such amount of money is forthcoming for all the usual reasons. It is certainly not for lack of looking for it, although I’m sure there are sources that I have not discovered or touched. For the last six weeks I have kept a chart with happy faces and stars to reinforce my efforts to find money. The chart has helped. I am now more than likely going to earn enough money each month this year to be able to pay back some of the ongoing debt I am in, and to travel to some important engagements like the Conference for Global Transformation in May. Just the same, the money for Savannah is not there today. Of course, it may show up tomorrow. It would be awesome!
What would I do in Savannah? Paint “Dirty Window” and have it ready for the ROM exhibit. (This is the painting of the rising prison.) Catch up on what’s been happening with people who are struggling to be economically included in the most racist place I have ever been. Re-immerse myself in an explicitly Christian environment that somehow moves me deeply. Hang out with pelicans during the month before all the tourists invade. Speak to people about what I have learned and questioned in the two years since I last spent time with them. Enjoy the car ride down and back – a time that always allows me to pull my thoughts together. Eat fabulous southern grits and BBQ and other foods rarely encountered in the cooler north. There is so much more that I can hardly imagine that three or even five weeks wouldn’t pass by in a flash.
But it seems, at least tonight, that I am not meant to go. Seemings can be wrong. I sure hope this one is!
Tuesday, January 25, 2011
January 25, 2011
I apologize to readers. Last night I forgot to blog! Just plain forgot until I was already in bed.
In some ways, since I blogged about the prison cells collected outside my window, I have lived a rather drunk, rather surreal life. Not literally drunk – I have had no alcohol and very little Morphine. Rather I have thrown my hat thoroughly into Cycle 3 and now it is simply unfolding. With this come demands – on my time, listening, focus, energy, stamina, words. There are demands from my assistants, ACF, ODSP, the Marsha Forest Centre, the Wisdom City Team, from my circle, my body, Father, WPIT, e-mail, Laser Eagles, the ROM?, the Book of Judith. I am not complaining – just spinning!
It all stems from taking myself seriously – perhaps way too seriously. I continue to imagine that I can transform the world by transforming how diversity is valued and included. Mike and I saw “The King’s Speech” again tonight, and though I waiver between whether I am more like George or Lionel I know (as in KNOW) I have an essential part in a drama much bigger than myself. Everything speaks to me as a potential means of finding a pathway to peace through Inclusion so I can turn down very little these days. That, and the ongoing search for $$’s, keeps prodding me on.
This morning Mike and I met with ACF and their poverty reduction champions and this afternoon with old and new members of the ACF Board and the Inclusion Circle. In all we met for over six hours. Mike was still raring to go after it all, but I was exhausted. For me the morning was mainly about listening, and listening to mainly whining, grieving and nostalgia for days when organizing seemed clearer. Listening took place on top of my own weary concern with feeling like once again I am being drawn into strategies that don’t work,
In the afternoon I felt the need to speak up about how it seems that ACF has not implemented the Inclusion Task Force recommendations. That and other people’s stuff led to a much livelier energy. However, at the end of the day (literally), it still remains in the hands of others to decide when, who and for what end this process will continue.
Going into the movie I lined up behind a young woman who is familiar to me from the Wisdom Course. Coming out we ran into a woman and her friend/supporter, both of whom were active twenty-five years ago in some committee or other that I was part of, probably the Ontario Advocacy Coalition. I felt that a certain element of safety and familiarity was added back into my day. In particular the woman who has a long term cognitive difference after a brain haemorrhage that she had in 1970 brought back the joyful sense that life is to be celebrated. She is just the sort of person I want to bring to lunch with ACF – Mary Lou, Miriam, Chloe, Greg and Felicia – the people who show me over and over again that it is way more effective in the end to stop trying to fix everything, and to enjoy the food, the company and the movie.
Speaking of lunch, I had the best roast beef sandwich I think I have ever had in my life. I could chew and swallow every bite, and I ate the WHOLE thing.
In some ways, since I blogged about the prison cells collected outside my window, I have lived a rather drunk, rather surreal life. Not literally drunk – I have had no alcohol and very little Morphine. Rather I have thrown my hat thoroughly into Cycle 3 and now it is simply unfolding. With this come demands – on my time, listening, focus, energy, stamina, words. There are demands from my assistants, ACF, ODSP, the Marsha Forest Centre, the Wisdom City Team, from my circle, my body, Father, WPIT, e-mail, Laser Eagles, the ROM?, the Book of Judith. I am not complaining – just spinning!
It all stems from taking myself seriously – perhaps way too seriously. I continue to imagine that I can transform the world by transforming how diversity is valued and included. Mike and I saw “The King’s Speech” again tonight, and though I waiver between whether I am more like George or Lionel I know (as in KNOW) I have an essential part in a drama much bigger than myself. Everything speaks to me as a potential means of finding a pathway to peace through Inclusion so I can turn down very little these days. That, and the ongoing search for $$’s, keeps prodding me on.
This morning Mike and I met with ACF and their poverty reduction champions and this afternoon with old and new members of the ACF Board and the Inclusion Circle. In all we met for over six hours. Mike was still raring to go after it all, but I was exhausted. For me the morning was mainly about listening, and listening to mainly whining, grieving and nostalgia for days when organizing seemed clearer. Listening took place on top of my own weary concern with feeling like once again I am being drawn into strategies that don’t work,
In the afternoon I felt the need to speak up about how it seems that ACF has not implemented the Inclusion Task Force recommendations. That and other people’s stuff led to a much livelier energy. However, at the end of the day (literally), it still remains in the hands of others to decide when, who and for what end this process will continue.
Going into the movie I lined up behind a young woman who is familiar to me from the Wisdom Course. Coming out we ran into a woman and her friend/supporter, both of whom were active twenty-five years ago in some committee or other that I was part of, probably the Ontario Advocacy Coalition. I felt that a certain element of safety and familiarity was added back into my day. In particular the woman who has a long term cognitive difference after a brain haemorrhage that she had in 1970 brought back the joyful sense that life is to be celebrated. She is just the sort of person I want to bring to lunch with ACF – Mary Lou, Miriam, Chloe, Greg and Felicia – the people who show me over and over again that it is way more effective in the end to stop trying to fix everything, and to enjoy the food, the company and the movie.
Speaking of lunch, I had the best roast beef sandwich I think I have ever had in my life. I could chew and swallow every bite, and I ate the WHOLE thing.
Sunday, January 23, 2011
January 23, 2011
A picture of the crane and the cubes that I have been describing to you appeared in The Toronto Star today. Here it is:
They are indeed modular parts of a building. A prision. The night-time, secretive play of giants turns out to be the reconstruction of the infamous Don Jail in downtown Toronto. The cubes are manufactured in Texas, trained to Toronto, and trucked downtown. The cubes are sturdy enough to be stacked several stories high, yet each is self sufficient, down to the plumbing. The ultimate assembly will hold over 1600 prisoners.
When I was about eight my younger brother and I reveled in stuffing our kitten into a cardboard box and trapping it there for hours. It died of the stress.
Ivan Illich said the only authentic response to pure evil is silence, because any other response sets up a dynamic that lends the evil a defined presence in our culture. I am not sure I believe that, because, as Marsha used to quote: "They came for the Jews, and I wasn't a Jew, so I kept silent, ... , and when they came for me there was no one left to save me."
I am stunned that this intriquing, enormous, slow dance of the gigantic cubes that has been unfolding under my bedroom window since mid-October - this large nightly activity is the deliberately plotted internation activity with an intended outcome of increasing our local prison population and to do so in as cheaply managed, most inhumane way as possible. Rob Ford, our vigorously right-wing Mayor must be gleeful indeed!
Suddenly, the view from my bedroom window has a sinister cast. My dreams will not be so peaceful.
They are indeed modular parts of a building. A prision. The night-time, secretive play of giants turns out to be the reconstruction of the infamous Don Jail in downtown Toronto. The cubes are manufactured in Texas, trained to Toronto, and trucked downtown. The cubes are sturdy enough to be stacked several stories high, yet each is self sufficient, down to the plumbing. The ultimate assembly will hold over 1600 prisoners.
When I was about eight my younger brother and I reveled in stuffing our kitten into a cardboard box and trapping it there for hours. It died of the stress.
Ivan Illich said the only authentic response to pure evil is silence, because any other response sets up a dynamic that lends the evil a defined presence in our culture. I am not sure I believe that, because, as Marsha used to quote: "They came for the Jews, and I wasn't a Jew, so I kept silent, ... , and when they came for me there was no one left to save me."
I am stunned that this intriquing, enormous, slow dance of the gigantic cubes that has been unfolding under my bedroom window since mid-October - this large nightly activity is the deliberately plotted internation activity with an intended outcome of increasing our local prison population and to do so in as cheaply managed, most inhumane way as possible. Rob Ford, our vigorously right-wing Mayor must be gleeful indeed!
Suddenly, the view from my bedroom window has a sinister cast. My dreams will not be so peaceful.
Saturday, January 22, 2011
January 22, 2011
I am about to prepare the proposal that I will put before the ED of the Atkinson Charitable Foundation (ACF). I recognize that I have a highly emotional response to her request of me. Clearly I am reactivated (or stuck) at more than one level! So, I thought that I would use this blog – this expression vehicle – as a way of writing her a personal letter. Then I could write her the straightforward proposal. I can also suggest that, if she is interested, she read the blog, although that seems pretty risky at the moment. Of course it couldn’t seem so risky if I didn’t feel that much depends on how my working relationship with her turns out, and what each of us is able to accomplish by working together.
I am sure that this is just the sort of thing that Gloria wants me to face and transform in the context of. She is always saying I can’t give anything away, as in permitting others to run with the ball after I have set a direction. I don’t think this is true but I do recognize that I am not the best judge! So these are the words I would say to the new ED who is curious about me, maybe even hopeful about me, and who holds the key to what my next project will look like, perhaps.
Dearest O,
(It always seems that such letters start with “Dear” or “Dearest”)
I have been struggling with how to frame a project to put before you by Monday morning. Saturday evening is about to arrive and I only have the barest outline in my head. I am frustrated, angry and hopeful. I am trained enough to know that I’m not really responding to you, but to a series of former relationships and opportunities both lost and fulfilled which have shaped my life, my understanding of Inclusion and my current “mission” in life. It seems to me that you are interested and that you hold a key to potential progress. However, both my sense of what is a key and what progress is leave me with a feeling that you have undue power over me at this moment. I am reacting to my own “helpless identity” in the face of your “power”.
In the eyes of the world, you are black and I am crippled. We spoke euphemistically about these realities last Wednesday. I explained to you that my relationship to this point with Atkinson has been as a “window washer” – in other words, my circumstances have lead me to a certain kind of work in the world and consequently people imagine both that this is the kind of work I want to do and also that it is the only thing I’m good for. Accordingly, when people want to include me, support me and/or honour me, they offer me another window to wash. This is exactly what I FEEL like you are doing now.
I have been so tempted to ask you if you would like to make some pancakes.
Specifically, I stopped wanting to be an advocate in approximately 1991. I took it up again in order to support the Individualized Funding Coalition of Ontario. In 2004 we were offered an opportunity to “consult” with the Deputy Minister of the Ministry of Community and Social Services in Ontario. I participated fully! I did so because, even though I figured there was very little chance that the work would lead to real policy change, I felt that there needed to be as good as possible a document that recorded for history the benefits of individually supported community participation for people who are labelled with developmental disability.
It is nearly impossible, as you know I am sure, for people to build full participation with minimal resources, including some that are illegally established. Secondly, this power is further diminished by the intense bureaucratic overlay that comes with these resources. Add to this the intensely inadequate capacity to do good research when all that is available to do the work are volunteers, no control group, no standard definition of anything, and tight deadlines to come up with data and analysis. In spite of this, the IFCO managed to produce two reports that each had “eyeball” significance. In other words, you could see by just looking at the data that there are huge differences in how people who have individualized supports participate in their communities versus people who have agency support.
Shortly after we produced this data, the Finance Ministry of the Province of Ontario shut that Deputy Minister down, had him reassigned, and put in place an ineffective puppet. All evidence that the government might move towards individualized support for people who are labelled with developmental disability disappeared overnight.
The hidden consequence of all this, at least hidden to the Ministry, the bureaucrats and well meaning people such as yourself is that the people themselves who are labelled lose at every step of this process. First of all, they lose relationship with their parents and caregivers as these people exhaust themselves with extra work, and the process of being drawn into defining their loved one as a needy disabled person. Secondly, they lose the opportunities that disappear while their caregivers are busy doing other things rather than going out to the library, the park, a volunteer job somewhere, church, etc. etc. Finally, as the bureaucrats dash the hopes of the advocates and burn them out, they lose the energy and commitment of their parents and caregivers – the main source of support in their lives. How many people end up in a worse situation and in group homes just because their parents became advocates and then burnt out? I have no idea what the number is but I am sure that it is not small.
I was not, I believe, turned into a cynic by this defeat, not just because I was expecting defeat but because I knew that people could not be satisfied unless they had tried, and try we did. My intention was to support the effort as best as I could, not imagine that we were somehow going to buck the bureaucracy and actually make a change. At the same time I very much intended to never pick up the banner of advocacy again!
Lo and behold one should never say never! Here comes a very energetic, intelligent and passionate ED who is more than willing to make pancakes. Who am I to say that she is not correct? History has funny turns and I am not the one to say that this is not the time in history when a new voice and new energy might actually shift the social perception of people who have been labelled developmentally disabled.
You remind me so much of an energetic and passionate woman that I met in 1978 who turned my life, and many people’s lives, around. I hated her for a good six months before I fell in love with her and proceeded to do anything she asked of me because somehow around her things really worked out. For example, although we are far from having genuine Inclusive education in Ontario, the bureaucrats have never been able to kill it either, and that has a lot to do with Marsha Forest, who so inspired and so kicked butt that her influence continues 11 years after her death from breast cancer. I can only hope to have such power as Marsha had.
So, you say, it is time to gather the advocates and to have them start talking to each other and to have them begin to create a common identity and a common approach. Do you know that that is exactly what Marsha inspired in our city in 1980 to support our powerful engagement with the system during 1981, the International Year of the Disabled Person? The impact of that conference reverberates to this day in small but fundamental ways.
I can hear Marsha’s voice saying quit your bitching and get writing. This is an opportunity not to be missed.
Alright then – Let’s get on with it! Where’s that pancake recipe?
I am sure that this is just the sort of thing that Gloria wants me to face and transform in the context of. She is always saying I can’t give anything away, as in permitting others to run with the ball after I have set a direction. I don’t think this is true but I do recognize that I am not the best judge! So these are the words I would say to the new ED who is curious about me, maybe even hopeful about me, and who holds the key to what my next project will look like, perhaps.
Dearest O,
(It always seems that such letters start with “Dear” or “Dearest”)
I have been struggling with how to frame a project to put before you by Monday morning. Saturday evening is about to arrive and I only have the barest outline in my head. I am frustrated, angry and hopeful. I am trained enough to know that I’m not really responding to you, but to a series of former relationships and opportunities both lost and fulfilled which have shaped my life, my understanding of Inclusion and my current “mission” in life. It seems to me that you are interested and that you hold a key to potential progress. However, both my sense of what is a key and what progress is leave me with a feeling that you have undue power over me at this moment. I am reacting to my own “helpless identity” in the face of your “power”.
In the eyes of the world, you are black and I am crippled. We spoke euphemistically about these realities last Wednesday. I explained to you that my relationship to this point with Atkinson has been as a “window washer” – in other words, my circumstances have lead me to a certain kind of work in the world and consequently people imagine both that this is the kind of work I want to do and also that it is the only thing I’m good for. Accordingly, when people want to include me, support me and/or honour me, they offer me another window to wash. This is exactly what I FEEL like you are doing now.
I have been so tempted to ask you if you would like to make some pancakes.
Specifically, I stopped wanting to be an advocate in approximately 1991. I took it up again in order to support the Individualized Funding Coalition of Ontario. In 2004 we were offered an opportunity to “consult” with the Deputy Minister of the Ministry of Community and Social Services in Ontario. I participated fully! I did so because, even though I figured there was very little chance that the work would lead to real policy change, I felt that there needed to be as good as possible a document that recorded for history the benefits of individually supported community participation for people who are labelled with developmental disability.
It is nearly impossible, as you know I am sure, for people to build full participation with minimal resources, including some that are illegally established. Secondly, this power is further diminished by the intense bureaucratic overlay that comes with these resources. Add to this the intensely inadequate capacity to do good research when all that is available to do the work are volunteers, no control group, no standard definition of anything, and tight deadlines to come up with data and analysis. In spite of this, the IFCO managed to produce two reports that each had “eyeball” significance. In other words, you could see by just looking at the data that there are huge differences in how people who have individualized supports participate in their communities versus people who have agency support.
Shortly after we produced this data, the Finance Ministry of the Province of Ontario shut that Deputy Minister down, had him reassigned, and put in place an ineffective puppet. All evidence that the government might move towards individualized support for people who are labelled with developmental disability disappeared overnight.
The hidden consequence of all this, at least hidden to the Ministry, the bureaucrats and well meaning people such as yourself is that the people themselves who are labelled lose at every step of this process. First of all, they lose relationship with their parents and caregivers as these people exhaust themselves with extra work, and the process of being drawn into defining their loved one as a needy disabled person. Secondly, they lose the opportunities that disappear while their caregivers are busy doing other things rather than going out to the library, the park, a volunteer job somewhere, church, etc. etc. Finally, as the bureaucrats dash the hopes of the advocates and burn them out, they lose the energy and commitment of their parents and caregivers – the main source of support in their lives. How many people end up in a worse situation and in group homes just because their parents became advocates and then burnt out? I have no idea what the number is but I am sure that it is not small.
I was not, I believe, turned into a cynic by this defeat, not just because I was expecting defeat but because I knew that people could not be satisfied unless they had tried, and try we did. My intention was to support the effort as best as I could, not imagine that we were somehow going to buck the bureaucracy and actually make a change. At the same time I very much intended to never pick up the banner of advocacy again!
Lo and behold one should never say never! Here comes a very energetic, intelligent and passionate ED who is more than willing to make pancakes. Who am I to say that she is not correct? History has funny turns and I am not the one to say that this is not the time in history when a new voice and new energy might actually shift the social perception of people who have been labelled developmentally disabled.
You remind me so much of an energetic and passionate woman that I met in 1978 who turned my life, and many people’s lives, around. I hated her for a good six months before I fell in love with her and proceeded to do anything she asked of me because somehow around her things really worked out. For example, although we are far from having genuine Inclusive education in Ontario, the bureaucrats have never been able to kill it either, and that has a lot to do with Marsha Forest, who so inspired and so kicked butt that her influence continues 11 years after her death from breast cancer. I can only hope to have such power as Marsha had.
So, you say, it is time to gather the advocates and to have them start talking to each other and to have them begin to create a common identity and a common approach. Do you know that that is exactly what Marsha inspired in our city in 1980 to support our powerful engagement with the system during 1981, the International Year of the Disabled Person? The impact of that conference reverberates to this day in small but fundamental ways.
I can hear Marsha’s voice saying quit your bitching and get writing. This is an opportunity not to be missed.
Alright then – Let’s get on with it! Where’s that pancake recipe?
Wednesday, January 19, 2011
January 19, 2011
The awaited meeting with the ED of Atkinson Charitable Foundation happened this morning. I was able to organize that Mike Skubic was with me and, much to the ED’s amazement, he and his work on the inclusive video games was very exciting to her. It turns out that she has encountered the Zombie Walk movement, and the whole idea that zombies could be a vehicle for experiencing and teaching Inclusion was a welcome eye-popper. I was a little bit jealous. My whole stuff around the BMX Model of Inclusion is way more serious, significant and unfun!
Afterward, Mike and I had lunch and considered deeply her request. Fundamentally, she is offering both of us a partnership, and some space to invent what that partnership will look like. I am sure I don’t fully understand what she is offering or what her request is. By the end of the meeting I was struggling a bit to shift gears and so lost track of some of what she was saying. Basically, I have been working hard in a certain direction for the last few months and had not seriously considered Atkinson as a "playground". I am more than willing, even thrilled, to work with Atkinson. It's just unexpected!
I am hoping that because of this I can use the BMX Model to work with members of the Inclusion Circle, the Community Advocates that Atkinson funds, the ED herself, and any Atkinson Board members who wish to participate. I want them to describe their personal and organizational situations and issues and to describe strategies they might like to use to move forward.
After, say, six months we could collect the stories and thoughts and together look at where the model is and isn't useful. This will help to tighten up the model or debunk it if it is genuinely useless. Lastly, it might (FINALLY) create a way to connect with the work being done around the Canadian Index of Wellbeing - a result I have been trying to achieve for about three years!!!!
I am thankful to Mike for pushing me beyond my own cynicism. Atkinson has done very little with the Inclusion Circle, and neither did the Laidlaw Foundation before that. It seemed to me that advising these philanthropic organizations created the same kind of exclusion that advocacy does, i.e. it’s just another by-product of M. So my first reaction to her enthusiasm was to get confused and wonder what the heck I could do that would make any difference to what I am entrusted in. By the end of lunch a pathway was much clearer.
By the way, the work of the last week has required me (and us) to articulate the BMX Model more succinctly so here it is:
The BMX Model of Inclusion was created by Judith Snow, WPIT, www.judithsnow.org. It is designed to succinctly capture the multitude of circumstances that people call Inclusion. Its elements are “B” (for Basic), “M” (for Mechanical), and “X” (for Crossover).
At a most Basic level, a country or community allows a group to coexist, but no other changes are offered or made for the group. In the “M” or Mechanical state, the community is willing to make accommodations for the included group—examples might be ESL classes, job training, etc. In the third, Crossover state, both the community and the included recognize that their world benefits from the gifts and contributions of everyone. The perception fades that there are two sides and a distinct boundary. Any human difference can be looked at this way.
The model is useful for more than description. Communities and individuals can use it as a way of analyzing their situations and determining powerful strategies for finding better placement as participants and contributors in their society.
So, yet again, I have a new departure. Like Gloria, I worry that this is an utter waste of time. However, I think I must try this, because after all, supporting and rescuing people one person at a time is just another way of ensuring that basic change never happens.
I am not saying that I know how to make the basic transformation of society happen. I am saying that I am willing and able to keep looking for that way.
Afterward, Mike and I had lunch and considered deeply her request. Fundamentally, she is offering both of us a partnership, and some space to invent what that partnership will look like. I am sure I don’t fully understand what she is offering or what her request is. By the end of the meeting I was struggling a bit to shift gears and so lost track of some of what she was saying. Basically, I have been working hard in a certain direction for the last few months and had not seriously considered Atkinson as a "playground". I am more than willing, even thrilled, to work with Atkinson. It's just unexpected!
I am hoping that because of this I can use the BMX Model to work with members of the Inclusion Circle, the Community Advocates that Atkinson funds, the ED herself, and any Atkinson Board members who wish to participate. I want them to describe their personal and organizational situations and issues and to describe strategies they might like to use to move forward.
After, say, six months we could collect the stories and thoughts and together look at where the model is and isn't useful. This will help to tighten up the model or debunk it if it is genuinely useless. Lastly, it might (FINALLY) create a way to connect with the work being done around the Canadian Index of Wellbeing - a result I have been trying to achieve for about three years!!!!
I am thankful to Mike for pushing me beyond my own cynicism. Atkinson has done very little with the Inclusion Circle, and neither did the Laidlaw Foundation before that. It seemed to me that advising these philanthropic organizations created the same kind of exclusion that advocacy does, i.e. it’s just another by-product of M. So my first reaction to her enthusiasm was to get confused and wonder what the heck I could do that would make any difference to what I am entrusted in. By the end of lunch a pathway was much clearer.
By the way, the work of the last week has required me (and us) to articulate the BMX Model more succinctly so here it is:
The BMX Model of Inclusion was created by Judith Snow, WPIT, www.judithsnow.org. It is designed to succinctly capture the multitude of circumstances that people call Inclusion. Its elements are “B” (for Basic), “M” (for Mechanical), and “X” (for Crossover).
At a most Basic level, a country or community allows a group to coexist, but no other changes are offered or made for the group. In the “M” or Mechanical state, the community is willing to make accommodations for the included group—examples might be ESL classes, job training, etc. In the third, Crossover state, both the community and the included recognize that their world benefits from the gifts and contributions of everyone. The perception fades that there are two sides and a distinct boundary. Any human difference can be looked at this way.
The model is useful for more than description. Communities and individuals can use it as a way of analyzing their situations and determining powerful strategies for finding better placement as participants and contributors in their society.
So, yet again, I have a new departure. Like Gloria, I worry that this is an utter waste of time. However, I think I must try this, because after all, supporting and rescuing people one person at a time is just another way of ensuring that basic change never happens.
I am not saying that I know how to make the basic transformation of society happen. I am saying that I am willing and able to keep looking for that way.
Thursday, January 6, 2011
January 6, 2011
I need to draft some stuff for the Executive Director of the Atkinson Charitable Foundation so I thought I’d start here.
The task is to equip her with enough compelling analysis and evidence in two hours so that she can activate her Board to take action on their Inclusion agenda.
What can the Board actually do to empower Inclusion? Their focus is on policy change. Where would policy change actually make Inclusion more likely to occur?
What would Inclusion look like? According to the BMX model:
- B – easier, more expected, even facilitated access for “targeted” individuals and groups to claim a space with little or no interaction required
- M – person centred and individualized services, citizen and economic development focus replaces welfare, charitable and health approaches
- X – broad recognition that everyone has differences that can foster interaction, relationship and so social and economic opportunity AND that the very characteristics that get turned into symptoms and excuses for labelling are potential for interaction, relationship and so social and economic opportunity
What happened to developing a common literacy about Inclusion.
To make the leap one must understand “Giftedness” – that is that gifts are anything you have, are or do that creates an opportunity for interaction and that interaction is fundamental to relationship and so social and economic opportunity. All differences are gifts.
Anyone who believes that either they themselves or anyone else is not what they should be already is in a trap.
Tell some stories.
Explain my organization bases and my history. Explain that recreating the same sort of organizations as already exist will automatically exclude most people who are labelled.
Excluded people LOOK like they are not contributing. This is a structural limitation.
Hospitality is a powerful stimulation for Basic Inclusion. What happened to revolutionary lunches?
Economics and Inclusion? We already said uneven labour market practices were founded in social exclusion. There is an inseparable link. This is a POLICY issue.
How ACF spends its money, and currently, if ACF spends its money, is a mark of its true values. In terms of X Inclusion, withholding its resources totally indicates no willingness to enter into genuine dialogue with those whose citizenship remains unexpressed.
The task is to equip her with enough compelling analysis and evidence in two hours so that she can activate her Board to take action on their Inclusion agenda.
What can the Board actually do to empower Inclusion? Their focus is on policy change. Where would policy change actually make Inclusion more likely to occur?
What would Inclusion look like? According to the BMX model:
- B – easier, more expected, even facilitated access for “targeted” individuals and groups to claim a space with little or no interaction required
- M – person centred and individualized services, citizen and economic development focus replaces welfare, charitable and health approaches
- X – broad recognition that everyone has differences that can foster interaction, relationship and so social and economic opportunity AND that the very characteristics that get turned into symptoms and excuses for labelling are potential for interaction, relationship and so social and economic opportunity
What happened to developing a common literacy about Inclusion.
To make the leap one must understand “Giftedness” – that is that gifts are anything you have, are or do that creates an opportunity for interaction and that interaction is fundamental to relationship and so social and economic opportunity. All differences are gifts.
Anyone who believes that either they themselves or anyone else is not what they should be already is in a trap.
Tell some stories.
Explain my organization bases and my history. Explain that recreating the same sort of organizations as already exist will automatically exclude most people who are labelled.
Excluded people LOOK like they are not contributing. This is a structural limitation.
Hospitality is a powerful stimulation for Basic Inclusion. What happened to revolutionary lunches?
Economics and Inclusion? We already said uneven labour market practices were founded in social exclusion. There is an inseparable link. This is a POLICY issue.
How ACF spends its money, and currently, if ACF spends its money, is a mark of its true values. In terms of X Inclusion, withholding its resources totally indicates no willingness to enter into genuine dialogue with those whose citizenship remains unexpressed.
Tuesday, December 7, 2010
December 7, 2010
I have been actively writing a brief for the ROM so tonight I will share something I wrote in March, 2001.
Thoughts on Self Determination
I was searching on the internet the other day and I found that the phrase “self determination” brought up a large number of articles on political sovereignty for colonized nations and for aboriginal groups. This got me to thinking again about the use these words when people talk about and plan with people who are labeled disabled.
Most groups in the world gained their distinctive identity because they have a definite geographical or ecological boundary, or because they share a culture. In my country, Canada, there are aboriginal groups who descend from people who lived as prairie hunters or woodland gatherers or tundra dwellers. Today they are fighting for their sovereignty -- their right to decide for themselves how to use their own resources, solve their own problems and conduct their own business, education and government. Also, the people who are descendants of settlers from France are also fighting for their self determination in Canada -- their sovereignty. They have remained a distinct group in the broader Canadian population because their language is still strong and vital, able to be used in everyday affairs of business and politics. French speaking people live mostly in the province of Quebec and so this group also has a geographic location and definition.
Are people who have been classified as disabled such a group? I don’t think so. Rather than being naturally a separate group, we are born, or acquire our “disability” identity, everywhere among people. We share every geography, ecology, language and culture with all human beings.
The term “self determination” is used in a different way when we are thinking of people who are labeled disabled. For us self determination is defined -- not as sovereignty -- but as Freedom, Authority, Support, and Responsibility. Advocates of self determination for people who are called disabled view these principles as the cornerstones that are required for a person to live a life of full participation in society.
Ever since I first heard the words “self determination” used in relationship to people who are considered disabled I have not liked this term. Don’t get me wrong. I work everyday to help make it possible for everyone to live in their own communities, choose their own homes and life styles, get good incomes, be respected, have friends and loved ones, and make the contributions they want to make through employment or in other ways that make sense to them.
It’s just that people who have great lives are not independent and not self determined -- no matter whether they are labeled able or disabled. All human life is made possible through relationship. Everything we know, everything we choose, everything we learn or do is in some way connected to other human beings. It is not more separateness that leads to vibrant lives of contribution, it is a better quality of relationship and cooperation. Independence does not lead to sovereignty in one’s own life -- the right sorts of relationship do!
The more powerful and fulfilled a person is the better is the quality of her or his relationships with other people. Powerful people influence and are influenced by thousands of other people. People listen to them and respect them -- they themselves also listen to and respect many other people. People who are fulfilled make choices based on knowledge and support garnered in a vast array of relationship -- personal and public, paid and unpaid, intimate and casual.
In other words a really good way to stay poor and isolated and unable to have a very good life is to keep trying to be independent!
“Disability” is really a lie. “Disability” is the idea that some people, because their bodies or minds or emotions function in ways that are unusual, are somehow unable to live fully as human beings. The truth is that every human being has some ordinary ways of being and some unusual ways. Everyone suffers sometimes and has burdens and sometimes burdens others. Everyone also has times of joy, sometimes gives something to someone else, and has the possibility of creating opportunity for others in the world. Paradoxically the most common thing about people is that everyone has unique ways of being themselves.
In our world the disability label is used as a way to set people apart from society. In other words “disability” is used as an excuse to deny us the sort of relationships and cooperation that would allow us to take our full place along side of other citizens in a diverse community.
There really is no lack of money or resources. And although there is always room for learning better ways to support people, we really do know basically how to include everyone together in one world. The question is: “Will we?”
The question: “Will we?” is not a question of personal independence and self determination. It is a question of relationship and politics. We are all citizens, regardless of ability. How are people who are called disabled going to take their full place in the world? We all need to take a part in answering this question.
A mistaken sense that self determination is the concern of one individual has often led to more of the same old thing. Those who don’t understand or want full participation everywhere can easily dress up segregation and oppression as choice. Too often, for example, a person is offered a “choice” between a group home, isolated living in an agency owned apartment or living as a paying guest in someone else’s family. Choosing between options that all are designed to keep you small is not real citizenship, whether or not it is self determination.
Advocates, family members and we who are labeled disabled must seek a deeper vision. We are human and society must reflect our human reality as much as it reflects the human reality of those who imagine their abilities are perfect and permanent. We must imagine a society where our unique and our ordinary contributions are opportunities for everyone and where we fundamentally belong. Such a society is the birthright of all people.
In the long run perhaps it doesn‘t really matter whether advocates continue to use the words “independent” and “self determination”. What matters, I believe, is that we continue to spread the vision that all abilities are needed in community to make the world complete and whole. Let us continue to work to make this vision real.
Thoughts on Self Determination
I was searching on the internet the other day and I found that the phrase “self determination” brought up a large number of articles on political sovereignty for colonized nations and for aboriginal groups. This got me to thinking again about the use these words when people talk about and plan with people who are labeled disabled.
Most groups in the world gained their distinctive identity because they have a definite geographical or ecological boundary, or because they share a culture. In my country, Canada, there are aboriginal groups who descend from people who lived as prairie hunters or woodland gatherers or tundra dwellers. Today they are fighting for their sovereignty -- their right to decide for themselves how to use their own resources, solve their own problems and conduct their own business, education and government. Also, the people who are descendants of settlers from France are also fighting for their self determination in Canada -- their sovereignty. They have remained a distinct group in the broader Canadian population because their language is still strong and vital, able to be used in everyday affairs of business and politics. French speaking people live mostly in the province of Quebec and so this group also has a geographic location and definition.
Are people who have been classified as disabled such a group? I don’t think so. Rather than being naturally a separate group, we are born, or acquire our “disability” identity, everywhere among people. We share every geography, ecology, language and culture with all human beings.
The term “self determination” is used in a different way when we are thinking of people who are labeled disabled. For us self determination is defined -- not as sovereignty -- but as Freedom, Authority, Support, and Responsibility. Advocates of self determination for people who are called disabled view these principles as the cornerstones that are required for a person to live a life of full participation in society.
Ever since I first heard the words “self determination” used in relationship to people who are considered disabled I have not liked this term. Don’t get me wrong. I work everyday to help make it possible for everyone to live in their own communities, choose their own homes and life styles, get good incomes, be respected, have friends and loved ones, and make the contributions they want to make through employment or in other ways that make sense to them.
It’s just that people who have great lives are not independent and not self determined -- no matter whether they are labeled able or disabled. All human life is made possible through relationship. Everything we know, everything we choose, everything we learn or do is in some way connected to other human beings. It is not more separateness that leads to vibrant lives of contribution, it is a better quality of relationship and cooperation. Independence does not lead to sovereignty in one’s own life -- the right sorts of relationship do!
The more powerful and fulfilled a person is the better is the quality of her or his relationships with other people. Powerful people influence and are influenced by thousands of other people. People listen to them and respect them -- they themselves also listen to and respect many other people. People who are fulfilled make choices based on knowledge and support garnered in a vast array of relationship -- personal and public, paid and unpaid, intimate and casual.
In other words a really good way to stay poor and isolated and unable to have a very good life is to keep trying to be independent!
“Disability” is really a lie. “Disability” is the idea that some people, because their bodies or minds or emotions function in ways that are unusual, are somehow unable to live fully as human beings. The truth is that every human being has some ordinary ways of being and some unusual ways. Everyone suffers sometimes and has burdens and sometimes burdens others. Everyone also has times of joy, sometimes gives something to someone else, and has the possibility of creating opportunity for others in the world. Paradoxically the most common thing about people is that everyone has unique ways of being themselves.
In our world the disability label is used as a way to set people apart from society. In other words “disability” is used as an excuse to deny us the sort of relationships and cooperation that would allow us to take our full place along side of other citizens in a diverse community.
There really is no lack of money or resources. And although there is always room for learning better ways to support people, we really do know basically how to include everyone together in one world. The question is: “Will we?”
The question: “Will we?” is not a question of personal independence and self determination. It is a question of relationship and politics. We are all citizens, regardless of ability. How are people who are called disabled going to take their full place in the world? We all need to take a part in answering this question.
A mistaken sense that self determination is the concern of one individual has often led to more of the same old thing. Those who don’t understand or want full participation everywhere can easily dress up segregation and oppression as choice. Too often, for example, a person is offered a “choice” between a group home, isolated living in an agency owned apartment or living as a paying guest in someone else’s family. Choosing between options that all are designed to keep you small is not real citizenship, whether or not it is self determination.
Advocates, family members and we who are labeled disabled must seek a deeper vision. We are human and society must reflect our human reality as much as it reflects the human reality of those who imagine their abilities are perfect and permanent. We must imagine a society where our unique and our ordinary contributions are opportunities for everyone and where we fundamentally belong. Such a society is the birthright of all people.
In the long run perhaps it doesn‘t really matter whether advocates continue to use the words “independent” and “self determination”. What matters, I believe, is that we continue to spread the vision that all abilities are needed in community to make the world complete and whole. Let us continue to work to make this vision real.
Wednesday, December 1, 2010
December 1, 2010
Today I am thinking about money. ODSP cut me off last month – again – and although I was able to get reinstated with no great difficulty the deposit did not arrive in my bank until this morning. I would have been in the position of having to draw further on my line of credit to pay my rent if it had not come when it did.
As a child I considered myself rich, but I was very distrustful of money. In grade three I was “befriended” by a girl who was by far the dirtiest and most unsavoury character I had met up until that point. I was in a way her captive audience as I was wheeled about in those days in a manual wheelchair over which I had no control. I imagine that adults, including my parents, threw us together because neither of us had friends and they felt we deserved each other. One day Mother gave me a quarter and sent Darlene and I off to the library to register and get a book. Along the way Darlene took the quarter and with that sort of persuasion that goes: “You really want to do this, don’t you!” bought ice cream. I don’t recall eating any ice cream or what lie we concocted to explain why we came back without a book. I do recall the fear, intimidation and disgust.
As a young teenager my aunts and uncles, particularly Uncle Ted, would give my two brothers and myself dimes and quarters whenever they visited. I couldn’t get out to spend any of it and I enjoyed hoarding it in any case, so the stash in my underwear drawer grew to be $20.00 more than once. However, both my parents would “borrow” from my wallet with promises to repay. Often they didn’t keep those promises.
At sixteen the government of Ontario decided to give me a “Disabled Child Benefit” which meant that a small amount of money went to my parents on my behalf – something like $100 a month. When this started my Mother told me that I was essentially paying rent now and that I could ask for some things to be done differently. After that moment nothing changed and I never saw any part of the money either.
I know now that my parents paid out lots of money on my behalf and that they often struggled financially especially in the early years of their marriage. There is no person more generous than my Father is and my Mother was. These stories come to mind, not to put anyone down, least of all my parents, but by way of seeing why money means so little to me. I think I basically learned that money could get me into real trouble and that it never really belonged to me in any case so why bother thinking too much about it.
When I went to university the situation changed radically. First, I had a scholarship and secondly I had a benefit under the vocational rehabilitation section of the welfare department with “disabled adults” in its mandate. Thirdly, I had a different allowance from the same Ministry which gave me the capacity to hire students for a few hours every day to give me personal assistance. I had the great good fortune to be supervised by a social worker who interpreted her regulations in the most generous way possible. This meant that even when I worked during summers between terms, or sometimes mid-school year my benefits were never cut. I paid my own tuition, living costs, other people’s and my own beer and had friends!
Skip the dark years of the nursing home and chronic care hospital. $60 a month from the government as a “comfort allowance”. Even then I earned some $$’s on “the side”.
When I fundraised for, founded and became the first Coordinator of Special Services for Handicapped Students in 1977 I paid myself $19,000 a year. The University doubled the next Coordinator’s salary.
I did alright – never brilliantly – in the financial world until 2006 when I decided to retire from a job within which I could do nothing that made me happy. I had savings, a small grant from the Marsha Forest Centre, a small pension and I continued to have self employed income. I co-owned a house and three times renegotiated the mortgage over ten years to give myself another pot of money to draw on.
I left the job in 2006 to give myself a fighting chance to do what I really wanted to do with my life. That turned into being an artist and founding the World Peace through Inclusive Transformation.
I have NO regrets and I am on the edge of bankruptcy. For fourteen months I have marvelled month by month that I have found ways to pay my rent.
I wonder, and my friends do too, what happened to my capacity to have money. Now that I am writing this I see that I may have returned to thinking that money is something I have no control over and that it would pervert me through the Darlene’s of the world if I had it. But I am not eight and I have a very different perspective on what can make someone choose to be a dirty thief. I owe Darlene, her mother and mine an apology.
Now, let’s make some cash!
As a child I considered myself rich, but I was very distrustful of money. In grade three I was “befriended” by a girl who was by far the dirtiest and most unsavoury character I had met up until that point. I was in a way her captive audience as I was wheeled about in those days in a manual wheelchair over which I had no control. I imagine that adults, including my parents, threw us together because neither of us had friends and they felt we deserved each other. One day Mother gave me a quarter and sent Darlene and I off to the library to register and get a book. Along the way Darlene took the quarter and with that sort of persuasion that goes: “You really want to do this, don’t you!” bought ice cream. I don’t recall eating any ice cream or what lie we concocted to explain why we came back without a book. I do recall the fear, intimidation and disgust.
As a young teenager my aunts and uncles, particularly Uncle Ted, would give my two brothers and myself dimes and quarters whenever they visited. I couldn’t get out to spend any of it and I enjoyed hoarding it in any case, so the stash in my underwear drawer grew to be $20.00 more than once. However, both my parents would “borrow” from my wallet with promises to repay. Often they didn’t keep those promises.
At sixteen the government of Ontario decided to give me a “Disabled Child Benefit” which meant that a small amount of money went to my parents on my behalf – something like $100 a month. When this started my Mother told me that I was essentially paying rent now and that I could ask for some things to be done differently. After that moment nothing changed and I never saw any part of the money either.
I know now that my parents paid out lots of money on my behalf and that they often struggled financially especially in the early years of their marriage. There is no person more generous than my Father is and my Mother was. These stories come to mind, not to put anyone down, least of all my parents, but by way of seeing why money means so little to me. I think I basically learned that money could get me into real trouble and that it never really belonged to me in any case so why bother thinking too much about it.
When I went to university the situation changed radically. First, I had a scholarship and secondly I had a benefit under the vocational rehabilitation section of the welfare department with “disabled adults” in its mandate. Thirdly, I had a different allowance from the same Ministry which gave me the capacity to hire students for a few hours every day to give me personal assistance. I had the great good fortune to be supervised by a social worker who interpreted her regulations in the most generous way possible. This meant that even when I worked during summers between terms, or sometimes mid-school year my benefits were never cut. I paid my own tuition, living costs, other people’s and my own beer and had friends!
Skip the dark years of the nursing home and chronic care hospital. $60 a month from the government as a “comfort allowance”. Even then I earned some $$’s on “the side”.
When I fundraised for, founded and became the first Coordinator of Special Services for Handicapped Students in 1977 I paid myself $19,000 a year. The University doubled the next Coordinator’s salary.
I did alright – never brilliantly – in the financial world until 2006 when I decided to retire from a job within which I could do nothing that made me happy. I had savings, a small grant from the Marsha Forest Centre, a small pension and I continued to have self employed income. I co-owned a house and three times renegotiated the mortgage over ten years to give myself another pot of money to draw on.
I left the job in 2006 to give myself a fighting chance to do what I really wanted to do with my life. That turned into being an artist and founding the World Peace through Inclusive Transformation.
I have NO regrets and I am on the edge of bankruptcy. For fourteen months I have marvelled month by month that I have found ways to pay my rent.
I wonder, and my friends do too, what happened to my capacity to have money. Now that I am writing this I see that I may have returned to thinking that money is something I have no control over and that it would pervert me through the Darlene’s of the world if I had it. But I am not eight and I have a very different perspective on what can make someone choose to be a dirty thief. I owe Darlene, her mother and mine an apology.
Now, let’s make some cash!
Friday, November 12, 2010
November 12, 2010
Today the pain clinic took place. It was a distinctly deflating experience.
I imagined white coated medical technicians, and of course, the mandatory doctor, giving me sermon-like discourses about the importance of learning to live with pain and not trying to get rid of it. I expected to be introduced to the mysteries of “managing” without medication. I was braced to be told about classes, approaches, required behaviour changes and, through some kind of ritual, to be initiated into membership with those who “live with pain”!
There was only one other person waiting when I arrived (on time) and when I left less than an hour later, still only one other. The receptionist was the only one wearing a white coat. I met two doctors – the resident in training and, after him, a lovely woman originally from London, England.
The eight page questionnaire that I turned in to the receptionist – filled out – never appeared again. The young man took an incomplete history and referred largely to the computer record of my recent hospital stay and previous clinical visits going back ten years.
The doctor in charge did not balk at my statements that most medications make me sick, or that I find them hard to swallow. However I was also told that although I will be given return appointments to try acupuncture and a TENS machine, nothing “alternative” will be covered by OHIP (Ontario’s health insurance) or ODSP (Ontario’s benefit for those labelled disabled). All she was really willing to offer is – another pill.
I left with the prescription, filled it at the hospital pharmacy and then my personal assistant either left the bag at the cash register or dropped it. I arrived at home with no medication and no recollection of its name. I only know that its other use is as an anti-depressant and that I have been given a paediatric dosage. It is to be taken before bed as it will make me sleepy. So it goes! My pain makes me like a sad and restless baby.
For this I waited more than ten months!
There is a song from the ‘50’s – Peggy Lee? – that goes: “If that’s all there is, if that’s all there is, if that’s all there is my friend then let’s keep dancing, let’s break out the booze and have a ball, if that’s all there is.” I don’t really know why this should be such a let down for me, but somehow when I compare what the best official medicine in Toronto has to offer with all my masseuse Jen and my friends have been coming up with for the past six weeks to support me in this crucial life shift, I’m a little stunned.
This morning my friend, Gloria, was recommending a pain relieving ointment made from the combined oils of Emu and marijuana. I have no idea where to get either, but clearly I have friends who do. It sure has got to beat drugging myself into insensitivity.
In any case in my reality the pain clinic of Nov. 12 was the watershed after which I would have all the information and experience necessary to make some concrete choices and plans about my Cycle 3 life. The clinic has come and gone. Disappointing as the outcome is my life awaits my direction.
I imagined white coated medical technicians, and of course, the mandatory doctor, giving me sermon-like discourses about the importance of learning to live with pain and not trying to get rid of it. I expected to be introduced to the mysteries of “managing” without medication. I was braced to be told about classes, approaches, required behaviour changes and, through some kind of ritual, to be initiated into membership with those who “live with pain”!
There was only one other person waiting when I arrived (on time) and when I left less than an hour later, still only one other. The receptionist was the only one wearing a white coat. I met two doctors – the resident in training and, after him, a lovely woman originally from London, England.
The eight page questionnaire that I turned in to the receptionist – filled out – never appeared again. The young man took an incomplete history and referred largely to the computer record of my recent hospital stay and previous clinical visits going back ten years.
The doctor in charge did not balk at my statements that most medications make me sick, or that I find them hard to swallow. However I was also told that although I will be given return appointments to try acupuncture and a TENS machine, nothing “alternative” will be covered by OHIP (Ontario’s health insurance) or ODSP (Ontario’s benefit for those labelled disabled). All she was really willing to offer is – another pill.
I left with the prescription, filled it at the hospital pharmacy and then my personal assistant either left the bag at the cash register or dropped it. I arrived at home with no medication and no recollection of its name. I only know that its other use is as an anti-depressant and that I have been given a paediatric dosage. It is to be taken before bed as it will make me sleepy. So it goes! My pain makes me like a sad and restless baby.
For this I waited more than ten months!
There is a song from the ‘50’s – Peggy Lee? – that goes: “If that’s all there is, if that’s all there is, if that’s all there is my friend then let’s keep dancing, let’s break out the booze and have a ball, if that’s all there is.” I don’t really know why this should be such a let down for me, but somehow when I compare what the best official medicine in Toronto has to offer with all my masseuse Jen and my friends have been coming up with for the past six weeks to support me in this crucial life shift, I’m a little stunned.
This morning my friend, Gloria, was recommending a pain relieving ointment made from the combined oils of Emu and marijuana. I have no idea where to get either, but clearly I have friends who do. It sure has got to beat drugging myself into insensitivity.
In any case in my reality the pain clinic of Nov. 12 was the watershed after which I would have all the information and experience necessary to make some concrete choices and plans about my Cycle 3 life. The clinic has come and gone. Disappointing as the outcome is my life awaits my direction.
Wednesday, November 10, 2010
November 10, 2010
Today it is very tempting to give up my idea that this is about expression and simply to paste in some of the writing that I have been doing today, to try and sustain some order in my life.
At the beginning of all this writing was (and still is I think) a sense that Cycle 3 offered an opportunity for me to express myself in ways that I didn’t see or didn’t choose previously. I invented a distinction between expression and communication. “Communication” is all the speaking, writing, art work, etc. that I might do in order to influence, negotiate with and manipulate the world of people trying to get each other to do things with and for each other. “Expression” is speaking, writing, art, etc. for its own sake or perhaps for no sake at all! Of course there is no clear boundary.
Today I was writing email and ended up producing a large piece in defence of my financial situation and how I have managed it over the past – 28? – years. As the evening grows late it is tempting to simply paste in that email. The rest of the temptation is that the entire requirement to write that email came from another large message that questioned my situation and financial management. It pissed me off royally and I would love to just take a virtual slap back at the writer by making the whole thing public. Of course it’s going to get public anyway – this particular email that I responded to was sent to nearly every member of my family.
So what am I actually angry about?!? I think it is that (sucky baby?) I am unwilling to explain and defend myself, what I believe in and the pathways that I have chosen and WILL choose to fulfill my life.
It would be blissful, although clearly naïve, to imagine that in Cycle 3 I have gained enough trust and permission to do as I please without question. Sigh! It is not to be, is it?
At the same time I don’t want to get sucked into filling these two pagers with communication. Even though lots of people read these, the point of doing this is not to promote my “case”, but for me to actually get to see what my case is. As a friend said this morning, these writings are like verbal collages. After they are done and often in the process of doing them I get to understand myself and my world with a fresh perspective.
A strong theme has emerged in the past week. I have received many, many gifts over the years and particularly in the past few years as I have been living on a limited government pension. Many of these gifts have been financial. People who give me money frequently seem to feel that they are helping me out of a crisis. I believe that in the past I have actually believed myself that I was in a crisis. I guess I sometimes was!
The truth is though that there is a distinct difference between being in a crisis and being able to benefit from other people’s generosity. To define it somewhat simplistically – a crisis is when I am out of options. Many times when I have requested money from others or accepted money that wasn’t requested the appearance of that money has seemed like a very good option or at least the best option at the time. But rarely was it the only option. In other words, I have felt that I was making a choice in accepting the offer and not in any way agreeing to give up my capacity to choose what my next step in life would be.
It has become quite clear in both trivial and larger ways that many times people who are giving me money are then expecting me to make similar choices that they imagine they would make in my circumstances. In fact people often feel the right to insist that there is a path that I should take. Consequently over the years I have collected a number of people who are close to me who carry a bag of stories with them of how I have somehow failed to keep up my end of a bargain – a bargain that I was unaware of or only dimly aware of making.
Once again, I have no interest in blaming people for this. Even more so I have no interest in continuing the pattern. I see that it has been part of a convoluted pathway that leads me to either make poor choices or try to avoid certain situations or take on more than is good for me to take on or try to do things that I don’t want to do or to do things that make no sense to me. In another blog called “Ah, but that’s another story” I have written about how the process of receiving the benefit called the Ontario Disability Support Program limits and warps the lives of others who have been labelled disabled. I am now beginning to see how receiving largess is affecting me in similar ways.
I imagine – I dream – that I can gather the people who have been and continue to wish to be generous with me in some sort of large dialogue, and see if we can come to a basic agreement about what is the purpose of their generousity and what do they actually expect of me. This would give me the choice to turn down some people if the expectation is too different from the life that I intend to live. On the other hand it would give others and me a chance to be honest in a way that has not been possible in the past about how I make the choices I make and why I do some of the things that others find so odd.
I believe that people would come to realize that I largely steer my life through three lenses. The first is a strong sense that I have always felt that I have a God given purpose – a vocation. This sense is shifting strongly – I have written about this previously. I feel that I have more space than ever to have a personal enjoyment of my life as well as vocational accomplishment.
My second lens is a commitment to be served by my personal assistants in a way that benefits them and leads them to be able to live their lives more strongly conforming to their own sense of what is right for themselves. This leads to some intense dialogue and deep relationship – not with everyone of course – but with a large number of the people who have been in my life over the years. Many choices that I make are in the context of supporting these relationships.
The third lens came to me when I was twelve years old. I was sitting in the back of a church, behind a sea of adult heads, unable to see the minister or any of the activities that were taking place. I was miserable having recently been thrown out of Girl Guides because of my “disability”. I was encountering other barriers as well, and was rapidly learning that the world planned for me to fade away in a small room in my parent’s house.
I heard the minister read that God is love. It occurred to me that either this was a heinous lie and God had no interest what so ever in me or that God would participate with me in opening pathways for me to live a full life. As full as I was then, and now, of passion to have and do it all, I could not imagine the hell that lay before me if I was to be stopped at every turn.
And so on that day I choose to believe that God is indeed love and that that love would be expressed in my life by my always being able to find a way.
Of course how I see God now has changed from when I was twelve. However the principle upon which I live my life has not changed. I believe based on no evidence what so ever, but simply as a belief, that there is a way and I will find it. This has always given me the courage and the permission to pick up pieces, look for new pathways, make new friends, try new projects, ask boldly and otherwise live in search of possibilities that I do not yet know exist.
But the extreme way of looking at it that a twelve year old had perhaps is not the best way to look at it now. Perhaps my friends and family and I really could work out a way that would take out some of the concern and distress that they feel for my safety and sanity and still leave me with the freedom to choose new relationships, opportunities and pathways as they show up day by day.
I am looking forward to this dialogue.
At the beginning of all this writing was (and still is I think) a sense that Cycle 3 offered an opportunity for me to express myself in ways that I didn’t see or didn’t choose previously. I invented a distinction between expression and communication. “Communication” is all the speaking, writing, art work, etc. that I might do in order to influence, negotiate with and manipulate the world of people trying to get each other to do things with and for each other. “Expression” is speaking, writing, art, etc. for its own sake or perhaps for no sake at all! Of course there is no clear boundary.
Today I was writing email and ended up producing a large piece in defence of my financial situation and how I have managed it over the past – 28? – years. As the evening grows late it is tempting to simply paste in that email. The rest of the temptation is that the entire requirement to write that email came from another large message that questioned my situation and financial management. It pissed me off royally and I would love to just take a virtual slap back at the writer by making the whole thing public. Of course it’s going to get public anyway – this particular email that I responded to was sent to nearly every member of my family.
So what am I actually angry about?!? I think it is that (sucky baby?) I am unwilling to explain and defend myself, what I believe in and the pathways that I have chosen and WILL choose to fulfill my life.
It would be blissful, although clearly naïve, to imagine that in Cycle 3 I have gained enough trust and permission to do as I please without question. Sigh! It is not to be, is it?
At the same time I don’t want to get sucked into filling these two pagers with communication. Even though lots of people read these, the point of doing this is not to promote my “case”, but for me to actually get to see what my case is. As a friend said this morning, these writings are like verbal collages. After they are done and often in the process of doing them I get to understand myself and my world with a fresh perspective.
A strong theme has emerged in the past week. I have received many, many gifts over the years and particularly in the past few years as I have been living on a limited government pension. Many of these gifts have been financial. People who give me money frequently seem to feel that they are helping me out of a crisis. I believe that in the past I have actually believed myself that I was in a crisis. I guess I sometimes was!
The truth is though that there is a distinct difference between being in a crisis and being able to benefit from other people’s generosity. To define it somewhat simplistically – a crisis is when I am out of options. Many times when I have requested money from others or accepted money that wasn’t requested the appearance of that money has seemed like a very good option or at least the best option at the time. But rarely was it the only option. In other words, I have felt that I was making a choice in accepting the offer and not in any way agreeing to give up my capacity to choose what my next step in life would be.
It has become quite clear in both trivial and larger ways that many times people who are giving me money are then expecting me to make similar choices that they imagine they would make in my circumstances. In fact people often feel the right to insist that there is a path that I should take. Consequently over the years I have collected a number of people who are close to me who carry a bag of stories with them of how I have somehow failed to keep up my end of a bargain – a bargain that I was unaware of or only dimly aware of making.
Once again, I have no interest in blaming people for this. Even more so I have no interest in continuing the pattern. I see that it has been part of a convoluted pathway that leads me to either make poor choices or try to avoid certain situations or take on more than is good for me to take on or try to do things that I don’t want to do or to do things that make no sense to me. In another blog called “Ah, but that’s another story” I have written about how the process of receiving the benefit called the Ontario Disability Support Program limits and warps the lives of others who have been labelled disabled. I am now beginning to see how receiving largess is affecting me in similar ways.
I imagine – I dream – that I can gather the people who have been and continue to wish to be generous with me in some sort of large dialogue, and see if we can come to a basic agreement about what is the purpose of their generousity and what do they actually expect of me. This would give me the choice to turn down some people if the expectation is too different from the life that I intend to live. On the other hand it would give others and me a chance to be honest in a way that has not been possible in the past about how I make the choices I make and why I do some of the things that others find so odd.
I believe that people would come to realize that I largely steer my life through three lenses. The first is a strong sense that I have always felt that I have a God given purpose – a vocation. This sense is shifting strongly – I have written about this previously. I feel that I have more space than ever to have a personal enjoyment of my life as well as vocational accomplishment.
My second lens is a commitment to be served by my personal assistants in a way that benefits them and leads them to be able to live their lives more strongly conforming to their own sense of what is right for themselves. This leads to some intense dialogue and deep relationship – not with everyone of course – but with a large number of the people who have been in my life over the years. Many choices that I make are in the context of supporting these relationships.
The third lens came to me when I was twelve years old. I was sitting in the back of a church, behind a sea of adult heads, unable to see the minister or any of the activities that were taking place. I was miserable having recently been thrown out of Girl Guides because of my “disability”. I was encountering other barriers as well, and was rapidly learning that the world planned for me to fade away in a small room in my parent’s house.
I heard the minister read that God is love. It occurred to me that either this was a heinous lie and God had no interest what so ever in me or that God would participate with me in opening pathways for me to live a full life. As full as I was then, and now, of passion to have and do it all, I could not imagine the hell that lay before me if I was to be stopped at every turn.
And so on that day I choose to believe that God is indeed love and that that love would be expressed in my life by my always being able to find a way.
Of course how I see God now has changed from when I was twelve. However the principle upon which I live my life has not changed. I believe based on no evidence what so ever, but simply as a belief, that there is a way and I will find it. This has always given me the courage and the permission to pick up pieces, look for new pathways, make new friends, try new projects, ask boldly and otherwise live in search of possibilities that I do not yet know exist.
But the extreme way of looking at it that a twelve year old had perhaps is not the best way to look at it now. Perhaps my friends and family and I really could work out a way that would take out some of the concern and distress that they feel for my safety and sanity and still leave me with the freedom to choose new relationships, opportunities and pathways as they show up day by day.
I am looking forward to this dialogue.
Wednesday, November 3, 2010
November 3, 2010
I’ve just published an article in one of my other blogs: “Ah, but that’s another story”. It seems unnecessary to completely write another piece, so I have included it below.
Today brought lots of pain. I am certainly not catching my rhythm this week. I guess that’s to be expected, but I don’t expect it! I find it frustrating and worry creating. Am I really as well as it seemed yesterday?
Well, time will tell won’t it! In the meantime I am just simply in the journey.
Here is the story I wrote for my other blog.
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.
Today brought lots of pain. I am certainly not catching my rhythm this week. I guess that’s to be expected, but I don’t expect it! I find it frustrating and worry creating. Am I really as well as it seemed yesterday?
Well, time will tell won’t it! In the meantime I am just simply in the journey.
Here is the story I wrote for my other blog.
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.
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