reflections related to disability advocacy, family and (needed) cultural change
Wednesday, September 23, 2009
Messages in The Madness
For several years I have worked with a woman who is both an excellent nurse and really good company. She also has a tendency to mix metaphors and create malapropisms that stick with me for years after I hear them.
One of the first I remember was when she was pretty sure about her opinion of a situation, but not COMPLETELY sure. She told me "not to hold her to it with a fine tooth comb." Now I would never have thought to hold anyone to anything with a fine tooth comb... but I do now. So be careful around me and hair tools.
Another time she was suspicious that someone at work had ulterior motives (which I am sure they did.) She told me to be careful because "there's something wet in the water." Of course, everything in water is wet, but I did not mention this to her--wouldn't dare!
But my favorite by far is her frequent assertion that there's a "message to her madness."
She's distorted a phrase, but it isn't really a bad idea.
When dealing with all the chaos: the kids, the meetings, the policy issues, the opportunities, the barriers, the rest of your life, etc, etc, etc... it is a good idea to have a few guiding principles--some message in the madness.
A consistent (though not rigid) set of beliefs can be very helpful... though they can lead to surprising places.
I went to a conference when Jenn was a baby where the speaker taught us all to ask "Where does this lead?" about the big and little decisions we would face in our daughter's life.
So when we consider doing things for our daughter or showing her how to do them herself we try to ask...
When we choose activities...
When we teach and discipline...
When we make plans...
And when we choose programs...
When we advocate personally and systemically...
This year, for the first time, we have chosen a special education program at a special education school for my daughter rather than having her included in our local school for her program. This was an agonizing decision for me--completely shocking in fact, but in the end it was the question "Where does this lead?" that cleared the path.
As we looked at our local high school and looked at the other possibilities available in our community we came to the reluctant realization that she would actually be more sheltered and less independent at our high school than at the special education school.
Our vision for our daughter's eventual life based on her own interests and choices (and not on any system's offerings, rules or shortcomings) has not changed. Her sense of herself as independent is crucial to this vision so we made our choice accordingly.
(And if that proves wrong we will change it!! Trust me on this.)
She started there this summer. She likes it and it seems to be going well...
The message stays the same, but the path? That twists and turns. It's madness!
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.