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!

5 comments:

Anonymous said...

As silly as this sounds I had never really considered the accessability situation of a metro transit system before. Now, I am aware of how daunting a train trip (to say, Philly) is to a newbie - one must negotiate the Penn Station thing and then after getting turned around a few times one must find an exit onto a street with taxis. I was directed to stairs at each turn - inconvienient with packages and luggage to be sure, but not impossible for my legs. Had my mobility been functioning at a different level that day I can;t imagine what a nightmare that trip would have been. All this to say: WOW! Universal design strikes again! I think Mom's with todlers and strollers, folk with crutches, not to mention wheelchairs or other acutriments. who is thinking of this type of thing? Perhaps some architects should spend a few days trying to get to work via wheelchair or toting a stroller and two kids! Could this be manditory for graduation from school? Terri - keep up the thoughtful provocative writing! kath

Sue in New Jersey said...

My sister (wheelie catholic) directed me to you, and all I can say is WOW. As a parent of a child born with PVL, Mild CP, OCD and various other 'labels', you sure hit the nail on the head for me with the 'bulk' system thing. Right now, we are in the process of updating my son's IEP, and I am at a loss with what to do for him. Up until now, it's been motor skill issues, and now he's in 6th grade (middle school) and hitting a wall in math and english. Perfect timing too because we made the switch from elementary school (where I knew all the CST and counselors) to a whole new world, Middle School! I know it'll work out for him, because he has such a wonderful support system and family, but, only another parent could understand the frustration, anxieties, etc involved in this whole process. Thanks so much for a GREAT blog and bringing these issues to people's attention! Sue

Terri said...

Thank you Sue and Kath! Shepherding the world to help folks move from not getting it to getting it is our very important job.

(My daughter is in 7th grade--yours is a transition I understand!!!)

Thank you for your encouragement!

Ettina said...

"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."

That's basically how I act when working with disabled kids. I usually ask what their diagnosis is, or else try to guess it, because it gives me a useful guide. But just knowing one child is diagnosed autistic, or Down Syndrome, or whatever, doesn't give me enough information to know how to interact with them. Only spending about 1/2 an hour or more with them gives me that information.

Terri said...

Thank you, Ettina, people with disabilities need the advocacy and support of people who really see who they are individually, not just as a "diagnosis come to life!"

When you know one person with Down syndrome (or anything else) what you know is ONE person with Down syndrome!

Thank you for your comment--and your good work!