I was asked a question the other day, that brings back all the passion and frustration of years gone by. The question was one that had been asked of me thirty years ago, and twenty years ago, and ten years ago, and now.
"How do I get services for my child? I am registered with the local developmental services network case managers, and have completed all the paperwork (and answered all the same questions I have already answered it seems a hundred times). I have been told that I am on the "waiting list" for services. When I asked how long I would have to wait, I was told the wait was "indeterminate". When I asked what the "ballpark" wait time might be I wasn't given an answer by those employed to provide me with support and advice. It took another parent to tell me it could be as long as two years or more. When I looked at my child, newly diagnosed (and that's another story, how long it took, and how much effort was put into, getting that diagnosis - but that's for another time), I thought how much of my precious child's life would be sacrificed to waiting for a service that evidence states clearly should be provided intensively and early - as early as possible. And I cried until my husband came home from work - tears of frustration, and grief, and as an expression of my state of helplessness."
I thought of those who have recently been diagnosed with a life-threatening illness, and how they too are sometimes on a "wait list" for services. How difficult a time in one's life that is, and how dependent one feels, and how grief-stricken, anxious, angry, frustrated, sad, and distressed one can be for the period of time it takes until an intervention starts to take place.
And then I thought of the amount of "wasted" time spent in so many of our "support services", as supply is managed carefully to protect the resources that ARE in existence from being overwhelmed by demand - the time taken so that the politics of the situation can be so carefully managed; the time taken to carefully document the activities that take time to perform, although they may have little to do with direct child- or family-related activity, to provide accountability for a service's existence and to defend the situation that exists - even if that is to essentially defend inactivity (in the clinical sense) and protect against allegations of negligence, when one is powerless through lack of resources to do something effective for those who are applying for service.
In this internet age, I am thinking that these parents are now in a position to know what they need to know so much more quickly, and with so much less effort than was the case at the start of my career, things that were obtained mostly by luck by many families of the past. But I despair that even so, the situation hasn't really changed much for so many families with children who have special needs.
I am even more angered when I see how much money goes into areas of our economy that have very little to do with mutual caring, support and other forms of intervention and support that make this world a better place for those born with less advantage.
Just a rant - I'll shake it off and get back to work now. I recall how one of my social workers at Children's Aid who was talking about getting fatigued from too much demand and not enough energy or support from the system. It's the story about two people standing on a beach, on which are strewn thousands of starfish, left high and dry by the tide going out. Left in the sun, they will surely die. One of the people is taking one starfish from the beach and throwing it back out into the surf. The other is saying "why do you bother, there are thousands of starfish on the beach, and you'll never be able to save them all! What does it matter?" The one throwing the starfish is saying back "it matters to this one".
Wednesday 12 May 2010
Monday 3 May 2010
Dave Hingsburger
I have known of Dave Hingsburger, now, for a little more than 25 years. On Friday and Saturday, Dave came to my home town, Carleton Place, and spoke to us. He didn't talk to us, or lecture to us. He spoke to us. He was originally slated to speak at the Carleton Place Canoe Club, where Dave spoke to us several years ago when he was still able to walk. Instead, we carried on at the Beckwith Township Hall on Friday, and in the Conference Room at Lanark Community Programs on Saturday - because the Canoe Club is still inaccessible and our alternatives to get Dave into the hall were unworkable. The Canoe Club is slated to be completely accessible by March 31, 2011. Our use of the hall helps them raise the necessary capital to put in an elevator. Dave was flexible and gracious as we scrambled and, with the help of some marvellous volunteers from the Mills Community Support Corporation, Jan Watson and Freda Clark, both Team Leaders in their residential services, we started just about a half hour later than anticipated, in an unplanned but totally accessible venue at the Beckwith Township Hall. Other than being unable to eat together at lunch time, this worked out reasonably well. We are fortunate in our small-town/rural settings in Lanark County (about a half-hour to forty-five minutes west of Ottawa) that we can invent solutions so quickly to what for some areas might be insurmountable problems. Cellphones and energetic volunteers made it happen quickly and relatively painlessly. I think I'll tell Dave that maybe we should try an experiment - like the way "Raves" are planned (or maybe, NOT planned, but spontaneous) - but just have Dave go wherever he'd like to speak from, and announce via Twitter, cellphone texts, and emails, the location and what time he will start speaking - and wait for the crowd to show up to hear him.
But that's not what I want to say in my blog. I want to say that I have crossed paths with Dave numerous times - for example, in either 1984 or 1985 (or it might have been 1986 - my memory is not very precise) I was speaking at St. Clair College in Chatham, during their "Winter Workshop Week" which used to be held in February each year - I think it might have been 1984 or 1985, and there was Dave doing a keynote address. In the early 1990's I was managing the Special Needs Unit at the Children's Aid Society of Ottawa, and a number of my staff, foster parents and OPR (Outside Paid Resource) providers were going to hear Dave speaking about Safeguards. I was also speaking a short time later to a group that was using money obtained through running workshops to supply their Sexuality Library with new resources, on the topic of spotting and responding to signs of abuse in people with disabilities. Dave's books and materials were some of the resources that the group purchased with their extra revenue. I was driving to work a few years later and heard Dave on CBC.
This past weekend, I was privileged to once again meet with Dave and listen to him on topics that are not so familiar to North American audiences, certainly not so familiar to us in Southeastern Ontario.
I don't know Dave, personally, very well, but as an observer, over time, of him as he presents himself in his public addresses, I marvelled at how he never seems one smidgen less passionate than I remember him at what must have been nearer to the start of his career. His jokes are never the same (at least to me), his stories never repeated (again, at least to my ears). His MESSAGE, however, has remained as strong and as reliable as ever I recall. He still disarms his audience by his self-deprecating humour, removing the distance between him as a speaker and his audience as human beings; he still reminds us of our humanity, both when we make mistakes, but also when he exhorts us to be better than the system in which we find ourselves. Dave is a masterful storyteller, who through the context that many of us find so familiar, begins to form his point, sometimes predictably, by rising to it as all good stories do. Sometimes the climb is like a hill with plateaus, rising in series until finally, at the top, only then does the view become clear and we can look back down to see where the "stopping off" points have been on our way to "getting it". His earthy way of speaking also communicates directly to those who are spending their time in direct care, whether paid or unpaid.
Dave also points out that many times, what should be so completely obvious, is anything but so. This is a point that Wolf Wolfensburger makes frequently, as well. We humans can, especially when working within formal systems, self-deceive, rationalize and think ourselves away from what is really important, better than anyone, and sometimes those of us inside human service systems do it WAY more than is good for those we serve. Dave encourages us to "Listen Up" and to really SEE, not just look. Dave spoke on Friday of Dick Sobsey's concept of MEETING a person with disabilities, not just "greeting" them. Clearly Dick has had a significant impact upon Dave, as he has for me and for many others who have had the benefit of reading, listening to, studying with him, or otherwise being able to access even just a little of the knowledge that Dick carries with him.
People who came to hear Dave, as must be the experience of nearly everybody who ever has heard Dave over his many years of service (quite a lot of people out there, around the world!) came away inspired, encouraged, positive, hopeful, determined, and informed. Some, I'm sure, with sore sides from laughing more than they might have done within the last many months. But my hope is that they got the point, and they got something else from Dave too - passion that never fades!
Dave even had the graciousness to thank Marjorie Gaw and Garth Teskey, the caterers of both Friday and Saturday. Since they moved their kitchen from Almonte to the Canoe Club to the Beckwith Hall and then Lanark Community Programs, and with no complaints, I think he was right on!
But that's not what I want to say in my blog. I want to say that I have crossed paths with Dave numerous times - for example, in either 1984 or 1985 (or it might have been 1986 - my memory is not very precise) I was speaking at St. Clair College in Chatham, during their "Winter Workshop Week" which used to be held in February each year - I think it might have been 1984 or 1985, and there was Dave doing a keynote address. In the early 1990's I was managing the Special Needs Unit at the Children's Aid Society of Ottawa, and a number of my staff, foster parents and OPR (Outside Paid Resource) providers were going to hear Dave speaking about Safeguards. I was also speaking a short time later to a group that was using money obtained through running workshops to supply their Sexuality Library with new resources, on the topic of spotting and responding to signs of abuse in people with disabilities. Dave's books and materials were some of the resources that the group purchased with their extra revenue. I was driving to work a few years later and heard Dave on CBC.
This past weekend, I was privileged to once again meet with Dave and listen to him on topics that are not so familiar to North American audiences, certainly not so familiar to us in Southeastern Ontario.
I don't know Dave, personally, very well, but as an observer, over time, of him as he presents himself in his public addresses, I marvelled at how he never seems one smidgen less passionate than I remember him at what must have been nearer to the start of his career. His jokes are never the same (at least to me), his stories never repeated (again, at least to my ears). His MESSAGE, however, has remained as strong and as reliable as ever I recall. He still disarms his audience by his self-deprecating humour, removing the distance between him as a speaker and his audience as human beings; he still reminds us of our humanity, both when we make mistakes, but also when he exhorts us to be better than the system in which we find ourselves. Dave is a masterful storyteller, who through the context that many of us find so familiar, begins to form his point, sometimes predictably, by rising to it as all good stories do. Sometimes the climb is like a hill with plateaus, rising in series until finally, at the top, only then does the view become clear and we can look back down to see where the "stopping off" points have been on our way to "getting it". His earthy way of speaking also communicates directly to those who are spending their time in direct care, whether paid or unpaid.
Dave also points out that many times, what should be so completely obvious, is anything but so. This is a point that Wolf Wolfensburger makes frequently, as well. We humans can, especially when working within formal systems, self-deceive, rationalize and think ourselves away from what is really important, better than anyone, and sometimes those of us inside human service systems do it WAY more than is good for those we serve. Dave encourages us to "Listen Up" and to really SEE, not just look. Dave spoke on Friday of Dick Sobsey's concept of MEETING a person with disabilities, not just "greeting" them. Clearly Dick has had a significant impact upon Dave, as he has for me and for many others who have had the benefit of reading, listening to, studying with him, or otherwise being able to access even just a little of the knowledge that Dick carries with him.
People who came to hear Dave, as must be the experience of nearly everybody who ever has heard Dave over his many years of service (quite a lot of people out there, around the world!) came away inspired, encouraged, positive, hopeful, determined, and informed. Some, I'm sure, with sore sides from laughing more than they might have done within the last many months. But my hope is that they got the point, and they got something else from Dave too - passion that never fades!
Dave even had the graciousness to thank Marjorie Gaw and Garth Teskey, the caterers of both Friday and Saturday. Since they moved their kitchen from Almonte to the Canoe Club to the Beckwith Hall and then Lanark Community Programs, and with no complaints, I think he was right on!
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