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?