...nothing here is promised, not one day... Lin-Manuel Miranda

by walking a very fine line (Part 2)
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So, no shit, there i was intending to write an introductory paragraph and writing six. I do that. When I wrote reviews, i wrote great 5 paragraph reviews, then went back and deleted the first rambling "very interesting but what does it have to do with this book?" paragraph. In studying Constitutional Law in college, I learned the phrase obiter dictum and it could define much of my writing.

That said (and in a whole paragraph too, we note) Ifinally get to go onandonandon when I blog. Thank the gods no one's grading me. So my previous blogpost about Chris Reeve was really supposed to be a short intro to the real topic here. Not too good at it, am I?

I've been spendng a lot of on-line time getting to know issues and writers in the disability field. I've been far less involved than I once was, and now, to no one's surprise, what with having time to read, issues to contend with and a whole new set of physical er, um, challenges, it's been really good to read what articulate folks have to say. It was one of those discussions that made me think about Chris and Dana Reeve. It was an essay about encouraging your kids. Encouraging your children to strive, to work, to dream. It is often how you get them to see beyond today. At the same time, there is the issue of being realistic, of not wanting to see someone disappointed, dumped by unrealistic goals. Most of us, i think, at least from what I know, when we realized we were not going to make it as astronauts, ballerinas, presidents, Oscar winners...well we adjusted pretty darn well. (I do recall one of my dreams was to be a hairdresser. What can I say? It would never have worked out.)

So the issue can be, how far do you encourage? How high to you set goals and dreams and the future? Do you believe in your child's abilities or do you set realistic goals. Those of us with disabilities cannot, can not do everything we want to do, despite all the happy talk. I cannot stand up to give a lecture. I cannot climb the Columbia Tower. Yes, I know folks who can and will. I have witnessed tap dancers with prosthetic legs and profoundly deaf drummers. There are those who wish to see their disabilities as inconveniences and barriers to be overcome. That worlks. For many many people. Not for all of us.

So why the hell did I bring up Chris Reeve to begin with? Because he dreamed. Because he always (at least publicly) talked of cures, of repairing severe spinal cord damage. He talked of walking some day even when his spinal fracture was so severe it was amazing he survived. And I am glad of that because yes, it will happen. Yes, there are all sorts of research from stem cell to new drugs and enzyme studies, that will result in "cures". I do believe that. Chris and Dana did too.

The hard part for me was when that took seeming precedence over dealing with The Real World, as it was. ADA passed in 1990; Reeve's accident was in 1995. Twenty years on from his injury, we still are fighting for basic fundamental rights as well as cultural and social acceptance. Any old ramp will not do. Recent snowstorm footage showed the shoveled snow piled on wheelchair ramps, blocking the automatic door opener. People still do say stupid things and always will (although recently someone asking if she really needed that wheelchair or if it was some "hipster vintage polio" thing, is so far beyond tired acceptance. Yes, really. No,not me. I'm still explaining about cars ahd wheelchairs. I'm still explaining about restaurants and battery chargers. We are all still defining and redefining disabilities and accommodations. We are still learning. All of us. Maybe even some day a "celebrity" will not do some posing that is so utterly offensive as one recently did.

Some years ago, I participated on a panel of folks with disabilities takling about the future and reality. In this tiny microcosm of a 4 or 5 person panel, with more disabled folks in the audience, we talked about cures, we talked about reality, and those of us who missed stuff (my current hot topic is "running for the bus". Damn, I miss that!) and those who were who they were and had no comparison, that stuck with me forever. Hope versus (?) reality. Dreaming that I could walk again, cook a lasagna, dance the night away, man I miss that shit ( I do not have a spinal cord injury). But I don't hope, in this lifetime to accomplish it. And believe me when I tell you that I know folks who do. I can only speak for me. I hope they're right. But my reality says "not now", "not yet".

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