8:45 Steve Perez, President of the Association of Regional Center Agencies (ARCA) gave a touching welcome as the grandfather of a girl my niece's age with the same diagnosis. A good start.
8:55 My friend, YB just walked in 10 minutes late. Just so y'all know.
9:00 Norman Kunc is giving the opening plenary.
"There is a categorical difference between the way non-disabled people see disability and the way most disabled people experience it."
"The main struggle isn't the struggle with the disability. The main struggle is with being identified as a person who is different."
Analogy: Imagine that you've saved up some money and you finally buy that piece of land where you're going to build your dream house to retire in. You build a beautiful house with four bedrooms and chandeliers and an ergonomic kitchen and the walk-in closets. Then the surveyor comes to examine the house and says it's beautiful and perfectly to code, but the bad news is, it's on your neighbor's land. And you say "No problem, we'll change the wallpaper.
Four ways to percieve disability:
Perspective Response
1. Deviance, Marginalize, A threat, segregate!
2. Deficiency Reform, fix the broken person. "I represent a normal part of human diversity"
3. Tragedy Benevolence Good quote- "Inclusion wasn't included in the social justice movement"
4. Diversity Support,innovation, value. Great quote: "Relationship delivers what rehabilitation promises."
"When you have a disability, innovation is a way of life."
>>>Being realistic isn't realistic
What we think is reasonable is often an unnecessary limitation.
Summary: Because the world is set up for non-disabled people, people without disabilities don't look for better ways to do things-"You do it the dumb way because you can." People with disabilities develop problem-solving skills and emphasize efficiency due to the higher cost of doing normal things. As a consequence, people with disabilities develop natural skills for innovation and creative task analysis. Society should take advantage of this.
This is a great start for the conversation we may or may not be about to have.
Showing posts with label ARCA. Show all posts
Showing posts with label ARCA. Show all posts
Monday, February 07, 2005
Monday, January 31, 2005
A New Day- The Prequel
Next week, the Association of Regional Center Agencies (ARCA- for definition of a Regional Center see the archive, July-ish) will hold a two-day conference on non-traditional supports for people with developmental disabilities. It's pretty hard to tell whether or not the conference has changed since it was about more inclusive day programs or whether the language was broadened. It's good to see Regional Centers engaging new ways of doing things as a group, and I applaud at least the purpose. I'm hopeful that this will be a useful, constructive, maybe transformational event. Not suprisingly, I'm a little cynical as well.
The first red-flag is the density of the programming. I think there will be dignitaries giving plenary speeches and sitting on panels for about 15 of the 16 hours. The content seems built around the idea that most people don't know what to do, but once told, might obey. That is the paradigm for dialogue in our system and it's more pervasive than good well or, even, disability. My hope that this event has value apart from the Super Bowl party on Sunday is pretty much pinned on the idea that the panelists in the workshops have been given a 4-minute time limit.
The unrecognized reality is that nearly our entire system (based on my five-year sample of people I talk to) agree about how the system should serve its clients. Every State bureaucrat, Regional Center bureaucrat, Vendor Bureaucrat, parent, client and demagogue involved agrees that the system should be more client-centered, customized and responsive. Pretty much all of us are trying. Most of us are somehow a great deal smarter and more innovative than the conversations we have together. Most of us have more insight than the experts we bring in to explain things to each other.
So the hope is that we can mark a change in tone from next week. More of the soul-crushing same is too painful to imagine but exactly what the conference agenda suggests.
Here's what I hope, though- The Monday morning dignitaries point out that the system's been talking and writing its brochures along these lines for a long time. If the system hasn't delivered everytime, or most of the time, or often enough to mention- it's probably because there are systemic barriers to the transormation. Not a lack of will or a lack of intelligence, just stuff in the way. I bet if we started to talk about where each of us (the not experts) encounter the barriers, we could really start to change things.
The first red-flag is the density of the programming. I think there will be dignitaries giving plenary speeches and sitting on panels for about 15 of the 16 hours. The content seems built around the idea that most people don't know what to do, but once told, might obey. That is the paradigm for dialogue in our system and it's more pervasive than good well or, even, disability. My hope that this event has value apart from the Super Bowl party on Sunday is pretty much pinned on the idea that the panelists in the workshops have been given a 4-minute time limit.
The unrecognized reality is that nearly our entire system (based on my five-year sample of people I talk to) agree about how the system should serve its clients. Every State bureaucrat, Regional Center bureaucrat, Vendor Bureaucrat, parent, client and demagogue involved agrees that the system should be more client-centered, customized and responsive. Pretty much all of us are trying. Most of us are somehow a great deal smarter and more innovative than the conversations we have together. Most of us have more insight than the experts we bring in to explain things to each other.
So the hope is that we can mark a change in tone from next week. More of the soul-crushing same is too painful to imagine but exactly what the conference agenda suggests.
Here's what I hope, though- The Monday morning dignitaries point out that the system's been talking and writing its brochures along these lines for a long time. If the system hasn't delivered everytime, or most of the time, or often enough to mention- it's probably because there are systemic barriers to the transormation. Not a lack of will or a lack of intelligence, just stuff in the way. I bet if we started to talk about where each of us (the not experts) encounter the barriers, we could really start to change things.
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