reflections related to disability advocacy, family and (needed) cultural change
Sunday, March 09, 2008
Xenagogue--Disability Leadership That Works
I am just going to admit it, the letter x stinks as a writing prompt! I learned this word from my favorite (nearly) daily read, the blog 37 days by Patti Digh.
Xenagogue is an excellent word though—it means guide. This mode of leadership is one of the biggest strengths of the disability movement.
Throughout my daughter’s life it has been the parents of other children with disabilities and my friends with disabilities that have showed me the ropes—in so many ways.
The day after we got home from the hospital with our new little baby I placed a call to the National Down Syndrome Society. It was a mom that answered that phonecall and gave me the number of my local organization.
I then called our local group and it was a dad whose first word to me was “Congratulations!” (a lesson in itself!) By the end of our conversation he had given me the schedule for upcoming meetings, had asked if my daughter had been seen by cardiology yet, and had asked if I had been in contact with the folks in our county who administered Early Intervention. That call, that dad set us on the path we are still on today.
Parents taught me about Down syndrome, about which programs in town were good and which books I should read next. Parents taught me about the laws and advocacy skills I would need to help my daughter succeed. Parents and friends who have disabilities asked—and continue to ask—the questions that keep me and my family growing and learning.
Parents and self-advocates teach each other to access systems, find supports and develop creative ideas.
Few other folks understand the truly individualized nature of the lives we live. Systems often attempt to ‘bulk’ our kids, trying to assign our kids’ supports based on the system’s capacities or values, rather than on the reality of the individual child’s own circumstances.
Systems often try to implement a “Down syndrome plan” or an “autism plan” for example.
Parents, on the other hand, understand that Down syndrome (and any other diagnosis) has a group of symptoms, and that those symptoms play out differently in each person. While data received from the experiences of others contributes to building each child’s plan, so does the needs, strengths and situation of the actual child.
As a nurse I was prepared by my training for this.
I know many things about appendectomies, for example. I know about incisions, medications, complications, lab results, pulmonary hygiene etc. I must incorporate all of these things in the plan of care for a person who has had an appendectomy. Yet every care plan I make will be different because I must also adjust my plan according to the actual situation of my own patient.
If my patient is very old or very young, has heart disease or diabetes, is pregnant or is HIV positive, has a supportive family or no family at all, or any of a thousand other possible variables, my data-driven plan must be adjusted to be effective. Applying scientific knowledge in an individualized manner is what nurses do.
In the disability world it is usually parents and self-advocates that make this individualizing happen.
Self-advocates and parents “get it.”
We are great at talking to each other.
In a much lesser way parents and people with disabilities reach out to people who do not have disabilities to share the disability experience with them. When we take the role of guide with folks beyond the disability movement understanding grows.
Last weekend in Washington I went out to dinner with a bunch of people, with and without mobility disabilities. As our friends’ guided us from elevator to elevator through the subway system of DC we all learned lessons about accessibility that will be food for thought for a long time.
On a larger scale laws like IDEA and the ADA exist because people with disabilities and parents worked as guides with lawmakers to build recognition of the disability experience.
While the role of the superhero in disability leadership gets overplayed, the role of xenagogue has room to grow!
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.