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!
Showing posts with label stand. Show all posts
Showing posts with label stand. Show all posts
Saturday, January 29, 2011
Friday, January 28, 2011
January 28, 2011
Well, I plugged away today, mostly while lying in bed, at finding the $5000 I still need to go to Savannah in two weeks. Some in my circle would say that this is my very problem – it is in my mind to look, not to have it come to me, and subtly I am pushing it away.
I listened to Trey Anthony’s Ted Toronto talk tonight. Her name has come up in my world a lot lately – we are both in the Second Story agenda. In the Degree of Freedom world we are separated by only two relationships – Helen to Jen to Trey. She has done a Ted talk. Do they pay people to do those talks I wondered?!?
I battle sometimes with my own reluctance to “push” myself. However, I have no reluctance to push Inclusion and apparently I am my own best example. So be it!
So I looked it up, found the Speaker’s Nomination form and applied. I got the e-mail back that says they received it. We’ll see.
The prison cube crane has been active – slowly – night and day for a few days now. The article in the Toronto Star seems to have sped things up. I wonder out loud with Helen how to stop the prison. I wonder to myself if I can return to just peacefully watching out my window, with no concern for the “value” of what I see – nonattachment. This “perfect” apartment has lost some of it’s sublimeness since I discovered the real nature of the gigantic blocks. I don’t want to have that rising feeling that I will have to move on to search again for my perfect home.
Of course the perfection or lack thereof are all inside of my own evaluation. The prison was always there – there have always been guns and drugs and crazed tenants in this building. The world is what it is! And so this is once again a great opportunity to create a gift out of this potential obstacle that has suddenly appeared before me.
I am so far behind on my e-mail it isn’t funny. Boredom and fundraising are the reasons. I want an adventure – a fun one – to legitimately be able to set up an automatic e-mail message that says: “I am out of town and will not be responding to my e-mail until… “
There has been nothing from the ROM or from ACF. Perhaps they will disappear – perhaps not. It wouldn’t be the first time that something or somebody occupied the depth of focus and energy that they have for roughly ten weeks only to vanish from centre stage. I feel like I am steeling myself for disappointment in several areas of my life.
Enthusiasm gone! Not the first time for that either. Fatigue. The doldrums. Apparently, according to a short video I saw today, it is a relatively new phenomenon to call such a state “depression” and to treat it medically. Others might call a shaman and do a ceremony for the whole “family” – me, Mike, Kimberley, Helen, Peter, Bill and Bill, Adlon, etc. Sounds like a mid-winter party to me!
I am making a promise to myself and my readers that I:
- will have something worth writing about by Monday – today is Friday;
- will catch up on e-mail by Monday.
I listened to Trey Anthony’s Ted Toronto talk tonight. Her name has come up in my world a lot lately – we are both in the Second Story agenda. In the Degree of Freedom world we are separated by only two relationships – Helen to Jen to Trey. She has done a Ted talk. Do they pay people to do those talks I wondered?!?
I battle sometimes with my own reluctance to “push” myself. However, I have no reluctance to push Inclusion and apparently I am my own best example. So be it!
So I looked it up, found the Speaker’s Nomination form and applied. I got the e-mail back that says they received it. We’ll see.
The prison cube crane has been active – slowly – night and day for a few days now. The article in the Toronto Star seems to have sped things up. I wonder out loud with Helen how to stop the prison. I wonder to myself if I can return to just peacefully watching out my window, with no concern for the “value” of what I see – nonattachment. This “perfect” apartment has lost some of it’s sublimeness since I discovered the real nature of the gigantic blocks. I don’t want to have that rising feeling that I will have to move on to search again for my perfect home.
Of course the perfection or lack thereof are all inside of my own evaluation. The prison was always there – there have always been guns and drugs and crazed tenants in this building. The world is what it is! And so this is once again a great opportunity to create a gift out of this potential obstacle that has suddenly appeared before me.
I am so far behind on my e-mail it isn’t funny. Boredom and fundraising are the reasons. I want an adventure – a fun one – to legitimately be able to set up an automatic e-mail message that says: “I am out of town and will not be responding to my e-mail until… “
There has been nothing from the ROM or from ACF. Perhaps they will disappear – perhaps not. It wouldn’t be the first time that something or somebody occupied the depth of focus and energy that they have for roughly ten weeks only to vanish from centre stage. I feel like I am steeling myself for disappointment in several areas of my life.
Enthusiasm gone! Not the first time for that either. Fatigue. The doldrums. Apparently, according to a short video I saw today, it is a relatively new phenomenon to call such a state “depression” and to treat it medically. Others might call a shaman and do a ceremony for the whole “family” – me, Mike, Kimberley, Helen, Peter, Bill and Bill, Adlon, etc. Sounds like a mid-winter party to me!
I am making a promise to myself and my readers that I:
- will have something worth writing about by Monday – today is Friday;
- will catch up on e-mail by Monday.
Wednesday, January 26, 2011
January 26, 2011
Today was mainly exhaustion, pain, little accomplishment, with the exception of a marvellous clearing call with Shirl this morning and a great walk and a coffee with cake at Yalla’s – with Michel, Helen his wife and Helen (my handler according to Dad). At Helen’s suggestion I Skyped Martha. I am glad I did. Tim hasn’t been well and although he will be fine Martha is clearly tired, and lonely. We laughed, and, if Savannah falls through, I will go to Wisconsin and do a course with her in April.
I figured out that one of the struggles I have with M (BMX Model of Inclusion) is that it has no memory. One of the things I was frustrated with ACF about yesterday was that one of the reasons put forth for not yet implementing the recommendations of its Inclusive Task Force was that certain – we used to call them intersectionalities – crossovers between marginalized people, like racialization and disability, had not yet been addressed. A critical story had been forgotten and we reminded the Board of it. However, this event put into perspective for me that empowering stories cannot be remembered in the M world.
This makes alliance, forgiveness, learning and stable empowerment impossible. It’s like giving a community mass Alzheimer’s.
I notice what big words I use – not my own language.
I also realize that I am approaching this potential choice point as if it were black and white, go or no go. Likely this attitude will screw it all up, and there is no real need for me to fear this so much. What I must do is determine what it is that I really need to make this work.
Martha – God love her – reminded me of many leaders I know. She also nudged me to ask for more money. I remember now that for my very first grant, in 1977, from the Atkinson Charitable Foundation, I asked for a salary that was about $500/month smaller than the next person who took the job.
On another topic, on Monday I found out that the prison that is being assembled from the cubes piled just outside of my bedroom window is being put up not at the Don Jail site, but here in South Etobicoke, in what used to be called Mimico. This morning the penny dropped. Those buildings that are under construction that I can also see from my bed and that will be featured in the painting that Mike and I are working on now – that incipient complex of two towers and a lower connecting building – that is the prison!
I have been watching it rise since practically its Day 1 and my Day 1 in Cycle 3.
So many people in the world are being separated from one another - housed, cloistered or imprisoned in individual compartments – condos, apartments, cells – and served – rehabilitated, recreationalized, managed, supervised. The life of a prisoner soon to be living five blocks from my bedroom is little different from that of the nearly mad old Caribbean woman who lives in poverty and fear, by herself, two apartments from me.
Since we are in fact surrounded by and infiltrated with M it must be the perfect place to fulfill my “mission”. There is no leaving to somewhere else. The definition of freedom is not getting out of here to be somewhere else.
These thoughts and realizations are both calming and terrifying. Now is the time to be still and listen.
I figured out that one of the struggles I have with M (BMX Model of Inclusion) is that it has no memory. One of the things I was frustrated with ACF about yesterday was that one of the reasons put forth for not yet implementing the recommendations of its Inclusive Task Force was that certain – we used to call them intersectionalities – crossovers between marginalized people, like racialization and disability, had not yet been addressed. A critical story had been forgotten and we reminded the Board of it. However, this event put into perspective for me that empowering stories cannot be remembered in the M world.
This makes alliance, forgiveness, learning and stable empowerment impossible. It’s like giving a community mass Alzheimer’s.
I notice what big words I use – not my own language.
I also realize that I am approaching this potential choice point as if it were black and white, go or no go. Likely this attitude will screw it all up, and there is no real need for me to fear this so much. What I must do is determine what it is that I really need to make this work.
Martha – God love her – reminded me of many leaders I know. She also nudged me to ask for more money. I remember now that for my very first grant, in 1977, from the Atkinson Charitable Foundation, I asked for a salary that was about $500/month smaller than the next person who took the job.
On another topic, on Monday I found out that the prison that is being assembled from the cubes piled just outside of my bedroom window is being put up not at the Don Jail site, but here in South Etobicoke, in what used to be called Mimico. This morning the penny dropped. Those buildings that are under construction that I can also see from my bed and that will be featured in the painting that Mike and I are working on now – that incipient complex of two towers and a lower connecting building – that is the prison!
I have been watching it rise since practically its Day 1 and my Day 1 in Cycle 3.
So many people in the world are being separated from one another - housed, cloistered or imprisoned in individual compartments – condos, apartments, cells – and served – rehabilitated, recreationalized, managed, supervised. The life of a prisoner soon to be living five blocks from my bedroom is little different from that of the nearly mad old Caribbean woman who lives in poverty and fear, by herself, two apartments from me.
Since we are in fact surrounded by and infiltrated with M it must be the perfect place to fulfill my “mission”. There is no leaving to somewhere else. The definition of freedom is not getting out of here to be somewhere else.
These thoughts and realizations are both calming and terrifying. Now is the time to be still and listen.
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.
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?
Monday, January 17, 2011
January 17, 2011
At about 4:50pm EST I was sitting with Helen and Dad in a branch of the TD bank watching the black computer screen of the burly, sometimes surly, financial officer as she set up a joint line of credit on the GIC that Dad has willed to me on his passing. The intention was to pay off the loan on the trailer that Gabor, Jason and I lived in on the WPI Tour up until Sept. 22, 2009.
Suddenly a clear white sentence appeared in bold letters near the bottom of her screen. TRANSFER APPROVED LOAN PAID OFF.
I nearly cried, fainted and stopped breathing for two seconds. The enormous unshiftable burden – the physical sign of my failure to manage my life during those seven months, the unending anxiety of a responsibility I can’t meet yet must meet every month – in a split second dispassionately disappeared.
I had no idea of the extent of the weight on my spirit until it was gone. And when it was gone, it was just gone. A pile of papers to sign, two managers to say “Yes”, an electronic ritual to complete precisely – and the white letters simply appeared at the bottom of the computer screen.
Forgiveness has been dispensed.
This does not mean I have no financial concerns. It means I have a path to getting from “red” to “black” to being once again free to powerfully impact my and other’s circumstances with my own money, not just other’s on my behalf.
I owe so much to my parents I cannot fathom the depth. My Mother’s relentless saving reaches from beyond her grave through my Father through his love of me and of manipulating his GIC’s to release me from the shackles and the shame I incurred for throwing my hat over the wall in 2008. I am blessed.
My sense of mission is once again reinforced. Why am I so blessed, so lucky if not for being yet again showered with opportunities to keep on bringing Inclusion. Forward – go forward!
Today I met a young research student, and in a nutshell, a feasible research project is emerging around measuring the impact of the WPIT inclusive video games on the peacefulness of the children and youth who play it. A new “Yes”, a different “Yes”, a powerful “Yes”! Forward – go forward!
Jen was here this morning. Together we explored the nature of standing. For me it was more like having a conversation with my body about the experience of standing – the being of upstanding – of leadership and courage. I am stretching and parts of my body are turning and curving differently. The body of Judith is discovering how to support her stand.
I, Judith, am leading the world, through a planet wide team of young people, into an international culture of abundance, inclusion and peace. It is my destiny and I choose to fulfill this dream.
Suddenly a clear white sentence appeared in bold letters near the bottom of her screen. TRANSFER APPROVED LOAN PAID OFF.
I nearly cried, fainted and stopped breathing for two seconds. The enormous unshiftable burden – the physical sign of my failure to manage my life during those seven months, the unending anxiety of a responsibility I can’t meet yet must meet every month – in a split second dispassionately disappeared.
I had no idea of the extent of the weight on my spirit until it was gone. And when it was gone, it was just gone. A pile of papers to sign, two managers to say “Yes”, an electronic ritual to complete precisely – and the white letters simply appeared at the bottom of the computer screen.
Forgiveness has been dispensed.
This does not mean I have no financial concerns. It means I have a path to getting from “red” to “black” to being once again free to powerfully impact my and other’s circumstances with my own money, not just other’s on my behalf.
I owe so much to my parents I cannot fathom the depth. My Mother’s relentless saving reaches from beyond her grave through my Father through his love of me and of manipulating his GIC’s to release me from the shackles and the shame I incurred for throwing my hat over the wall in 2008. I am blessed.
My sense of mission is once again reinforced. Why am I so blessed, so lucky if not for being yet again showered with opportunities to keep on bringing Inclusion. Forward – go forward!
Today I met a young research student, and in a nutshell, a feasible research project is emerging around measuring the impact of the WPIT inclusive video games on the peacefulness of the children and youth who play it. A new “Yes”, a different “Yes”, a powerful “Yes”! Forward – go forward!
Jen was here this morning. Together we explored the nature of standing. For me it was more like having a conversation with my body about the experience of standing – the being of upstanding – of leadership and courage. I am stretching and parts of my body are turning and curving differently. The body of Judith is discovering how to support her stand.
I, Judith, am leading the world, through a planet wide team of young people, into an international culture of abundance, inclusion and peace. It is my destiny and I choose to fulfill this dream.
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