reflections related to disability advocacy, family and (needed) cultural change
Saturday, June 27, 2009
NVLD and Social Learning
During my Partners in Policymaking course I was privileged to hear Al Condeluci speak. Al is the Executive Director of UCP in Pittsburgh. He grew up with a cousin who had Down syndrome and has been a lifelong proponent of quality lives, relationships and belonging for people with disabilities.
His talk at Partners was a how-to seminar on joining and belonging to integrated groups for people with disabilities. His warmth and enthusiasm were contagious and his strategies were completely practical and useable--and honestly would work for anyone.
He said that people usually join groups around interests like gardening or trains or photography or Civil War re-enactment rather than around characteristics.
So the first step is to determine an interest. After that, there are a few things to observe:
* People who BELONG in a group share a common vocabulary (for example for photography: camera, film, digital and flash for starters) as a beginner you don't need expert vocabulary, but try to learn some of the basics.
* There are social customs or patterns that people who BELONG to a group observe. For example, certain people always sit in the same seat--if you wish to BELONG, do NOT sit there. Watch the group for a bit to notice the way things are 'always done' and respect that. You can make additions and help with changes once you really belong, but NOT in the beginning.
*Groups follow a typical bell curve. 20% Negative, 60% undecided (waiting to be seduced is what Al called them!) and 20% what Al calls Positive Gatekeepers. Many folks make the mistake of begging for the good graces of the negative folks which they will NOT ever give you--forget them. Observe the group to figure out who the Positive Gatekeepers are--they are the conduits to belonging. They will say "hi, come with me, let me introduce you to everyone!!" because that is just who they are.
*Introduce yourself to the positive gatekeepers and ask them to bring you aboard.
I went home from Partners and tried this out a number of times for my daughter who has Down syndrome, with excellent success. I never gave it much thought for my son, until one summer he was in a drama group and bringing a book with him to read on breaks.
I mentioned to him that people who saw him with a book probably wouldn't talk to him much because they would think he was busy... He said the kids were playing cards during breaks and hadn't asked him to play.
Thankfully, I thought of Al's talk.
"Do you know how to play the game?" I aked. He said he had watched and thought he did know the game.
Then I pulled out my notes and showed them to him. He had indeed noticed some of the social customs I was talking about.
The next day he want in, book in hand, to watch for who the positive gatekeepers might be.
He came home with a person in mind.
He said it would be awkward to ask, but I assured him that positive gatekeepers do this for everybody and won't even notice. Then we had to come up with a question to ask. He decided on, "I think I have figured out how to play the game, could I try?"
The next day he got out of the car with his book again...
When I picked him up he told me he had played cards all day, and the next morning I noticed he left his book at home.
It has been several years since that summer cardplaying success. Social stuff still doesn't always come easy, but it is ever improving.
My son still starts conversations in the middle without giving context sometimes... and he still is more comfortable with smaller groups than larger ones. And I am always looking for strategies that I can explain that will expand his repertoire. (In fact he read this post by Stephen Drake and said he was going to remember this to try.)
And two weeks ago he went to a big end-of-the-schoolyear event. When I went to get him I expected to see him sitting at a table, or pacing around the activity as he often does. But no. He was out on the dance floor in the midst of a huge group of kids dancing like a wild man--like everyone else...
Will he be able to do that every time? Who knows?
Frankly, no teenager is socially smooth every time!
Growing and learning are lifelong processes for EVERYONE--NVLD or no.
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.