>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.