reflections related to disability advocacy, family and (needed) cultural change
Monday, January 18, 2010
Unexpectedly Effective Advocacy: The Success-Experience
Since learning about my daughter’s diagnosis of Down syndrome and my son’s diagnosis of Non-Verbal Learning Disorder in the early 1990’s I have embraced advocacy skills—the skills of ‘speaking up.’ I have learned about successful advocacy through workshops, books and mentors and I have used these skills to change my kids’ personal situations, to improve systems and to promote public policies that support the recognition of the full citizenship of people with disabilities. Along the way I have picked up a few tricks that aren’t usually mentioned as advocacy skills, yet they work for me. Perhaps you will find them useful as well.
My Aunt Mary Ann, my father's oldest sister lived in our town when I was growing up. She would always say that she was my 'spinster, librarian aunt' which use to upset me to no end. It was true. She lived alone and she was a librarian, but she was also brilliant and engaged and vital, and words like "spinster" used to offend my spirit when I was young.
I would spend about a weekend a month at her house (overnight!!) Not only would she have picked out the best books in the world for me, but we would cook and sew and work on projects and snack on cranberry juice or tea and homemade cheesecake-brownies or lemon bars (or chocolate chips right out of the bag!) And she would talk to me about beliefs and ideals and her philosophies on education and more.
One weekend nothing we touched worked--sewing projects wouldn't go together, we ran out of supplies for some other project right in the middle, and the recipe we were experimenting with for dinner went up in flames. We were both miserable.
On the way to Don and Bob's (One ground round-ONE!), I said that I was surprised that we were going out.
She smiled at me and said, "Terese, what we need now is a success-experience."
Apparently this was not just her idea, but something written about in education articles at the time. The idea was that to be effective you sometimes need to prime the momentum pump with something positive.
Dinner was delicious, and I had to admit the weekend turned around--the next day's projects weren't nearly as disastrous.
This little nugget of wisdom has stayed with me ever since and it is surprising how helpful it can be--in life and in advocacy.
When my kids were little and things would go sideways, ramping things back and playing a game we were all good at, or taking on a task we knew we could conquer would put us back in the mood to try something more challenging.
It works at school and with programs as well. My friend's son demonstrates some challenging behaviors at school. When the classroom team is overwhelmed and jumping to all sorts of drastic conclusions my friend and I often brainstorm about how to make things better. At one point we chatted about success-experiences and she decided to try it. She listened hard to hear what the teachers were saying was their biggest problem. Then she applied her know-how to that problem--just that problem.
She offered the team strategies for addressing that problem. She created visuals, provide documentation and whatever else it took to iron out this one issue. The team was not exactly receptive to her ideas at first, but when they applied her strategies and they worked, really good things began to happen.
The team became energized and started believing that they could be successful with her son. And my friend's credibility as contributing team-member was enhanced.
This is something we both use as a first-line strategy nowadays.
I think it is more effective if you pick a high-impact success (a fulcrum), but if things are bad enough start with ANY success you can get.
The same is true in systems advocacy. Little successes set the stage for bigger successes. Getting simple legislation passed creates relationships within the disability community and with community leaders that can lead to bigger projects and bigger successes.
(Black and white pictue of Don and Bob's restaurant with lots of vintage cars in front from here.)
I am the mother of three, wife of one. I am a Partners in Policymaking graduate and a committed disability advocate. I want to catch up on my scrapbooking, learn more about art-journaling, get my house in order, read all the books I have set aside to read and change the world--not necessarily in that order. The opinions in this blog are my own and not those of any of employers.