Tuesday, January 22, 2008

Second Attempt at a Wheelchair

For the past week, I've been driving (off and on) an Invacare wheelchair. As promised by the Rehab Specialist, this model addressed many of my earlier frustrations.
  • The mid-wheel drive made the chair much easier to steer (even with a joystick) and made for a tighter turning radius. Swiveling sure beats the forward-back motion of the scooter!

  • The smaller size meant I could (with some planning) reach the floor.

  • Shorter armrests allowed me to get closer to sinks, computer keyboards, etc.

  • With swing-away footrests, I could transfer more easily. (The bathroom at work continues to baffle me, though. If I get a wheelchair, I will have to ask for some accommodation, but WHAT, exactly?)
There were still some problems. With my vast, two-wheelchair experience, I can separate (I think) the ones that come with wheelchair territory from the ones that can be addressed.

Carrying stuff with a wheelchair is going to be tricky.
Getting through doors will take caution and strength.

But, we can find a different headrest (the loaner had a Stealth headrest) that will not spear passing ten year-olds.
We can adjust the footrests so they're not at odd angles.

The wheelchair is definitely more comfortable and maneuverable than the scooter. Assuming I get one, it will usher in a whole new learning curve. After today, the issue will be in the lap of the insurance gods.

Tuesday, January 8, 2008

Dealing with Difference

Almost thirty years ago, in Professor Wu's Chinese Philosophy class, I fell in love with the Confucian idea of corrective action moving from the personal to the global. First you change yourself. That changes your family, which changes your village, which changes your country, which changes society. (I do see the counter-argument here that this leaves individuals safely navel-gazing rather than challenging the existing power structures, but I like the practicality of reachable first steps.)

I realize that my own relationship with disability is moving from the personal to the political.

So far, I've been focused on my own internal experience of living with disability and chronic illness: coming to terms with the unexpected abnormalities of my body. I'm choosing that word deliberately. The imaginary construct of "normal" may be one of our least useful. I grew up expecting a normal life. I hoped secretly to be extraordinary, but never considered the root meaning of that word: "outside the course of normal events." For twenty-five years, I have been learning how to cope with being abnormal.

Perhaps most of my work has been internal because my disability has stayed within the bounds of "inconvenience." Yes, I have been visibly disabled for the last ten+ years, but I have been able to function, for the most part, as a normal person. In the last year or so, that has been changing. Until recently, changes in my environment could compensate for my physical limitations. That is no longer true. There is very little "normal" left in my life.

On the other hand, this is a fairly normal situation."According to the U.S. census in 1997, roughly one out of every five Americans qualified as disabled. That is 55 million people; 33 million people qualified as severely disabled. The numbers are probably much higher than this. And as Americans live longer, their chances of being at least temporarily disabled rise significantly. Yet the irony of disability is that it is both present and absent." (Who’s Not Yet Here? American Disability History
Susan Burch and Ian Sutherland) Twenty percent of us are abnormal because of disability. If we start adding other abnormalities into the mix, there will be no one drinking at the "Normals Only" fountain.

For the last several years, I've struggled with accepting my own differences. Now I'm wondering how to apply what I've learned to the wider world. To be honest, I'm also wondering how to teach the wider world to respond to me. This connects, I think, to my earlier post about mutual help

For the last twenty years, I've been working to apply my understanding of the creative process to the rhythms of chronic illness. My new "research project" is: What does it look like to be a person (family, village, nation, society) that responds compassionately, courageously and creatively to the differences among us? How do I embody that in the world?

There's a good project for the next twenty years.