If your disability isn't physically, hit-me-over-the-head evident, it doesn't exist to most people. This truth is hurtful and enraging. It can ultimately be the breeding ground of despair because you, the real you, are invisible as a direct result.
Other people see the version of you that fits their reality. It may graze yours, tangentially, just by chance. The result is that you sit inside a glass box of half-truths and whole misunderstandings, imprisoned by the incomplete vision of someone else.
It's true that this happens to everyone. There are differences, though. For one thing, so-called normal people have sets of life tools that they always carry with them. They know how to use them in a variety of situations. They understand the rules of use....
Got to go. Overwhelmed. Be back when I can find my toolbox.
This is a day of remembering and a day of coming together as a people and as human beings.
This morning I listened to a thought-provoking radio broadcast called "9/11 Who Do We Want to Become? Remembering Ten Years After - A live event at St. Paul's Chapel" [in lower Manhattan]
"September 8, 2011 » » » » In the days and months after 9/11, St. Paul's Chapel became the hub where thousands of volunteers and rescue workers received round-the-clock care. It was a moving setting to explore how 9/11 changed us as a people — and to ponder the inward work of living with enduring grief and unfolding understanding. From a live conversation at the edge of Ground Zero, The New Yorker's Hendrik Hertzberg, journalist and novelist Pankaj Mishra, and theologian Serene Jones."
To download an mp3 (51:08 min.), listen to the broadcast immediately (flash, 51:08 min.), view the event video or listen to the podcast, please go to http://being.publicradio.org/programs/2011/ccp-911/ There is a lot of other rich material on the page. Even if you don't agree with the content or the perspective, I believe that it's a useful part of our discourse on September 11, 2001 and our progress toward healing and moving into a better future.
People with disabilities and those who are part of their lives struggle constantly with attitudes that emphasize their "difference." One aspect of this is very damaging to each of us, to my mind. That is the mindset that says that each disability has to be addressed and treated separately from all others. Paradoxically, the people connected with disability sometimes buy into this dangerous viewpoint to such an extent that they perpetuate the struggle.
The results of this buy-in include disability-specific associations and other very focused efforts to explain and help people with just one disability. This is not all a bad thing. We need to take a close look at the organization of a paragraph, for instance, if we want to understand and improve writing and communicate clearly. A microscope helps us see features that we wouldn't ordinarily see at all. Looking closely helps us focus, which in turn can lead to previously unimagined solutions.
But there is such a thing as being too focused. Obsessing on spelling keeps a beginning writer from getting her thoughts down in the first place. Studying cells from an octopus doesn't tell you what the animal really looks like. Focusing exclusively on specific learning disabilities...or ADHD...or even on the entire spectrum of autism keeps each one in its own box. Nice and neat. And apart. Struggling to be heard, to be seen as human.
To break out of these boxes takes a lot of effort. Sometimes people prefer to keep the lid on, unwittingly choosing the isolation of their comfort zone to the challenges of seeing what's outside. Some are not ready for what's outside the box.
What's outside is certainly complex. There are all of those other disabilities groups clamoring for the attention, the understanding, the dollars of the society at large. There are the attitudes found in schools, in whole communities, in our very diverse society that come together to keep people with disabilities and those who share their lives in their boxes. People with disabilities are seen as "other," as "different," and, yes, sometimes as annoying and overly demanding. Besides that, people who don't see themselves as having disabling conditions certainly don't want to catch them from those who do!
Yet all people have similar biology. Everyone needs food, clothing, shelter, and contact with others. All have dreams, aspirations, and hopes for living the best life they can. If we don't acknowledge and celebrate our similarities, it is hard, if not impossible, to build solutions that make dreams come true. As a result, all of us are less than we could be.
To be sure, the other stuff is interesting and sometimes even vitally important. But the "other stuff" - abilities, skin color, religion, etc. - does not define a person's humanity. It is not the essence of who a person is. So, let us learn to look at each other as people first.