I have a friend, G., who was born with some major differences in his body from mine, owing to his mom taking Thalidomide. We’ve fallen out of touch: I retired, and we live in different countries. Increasingly, though, I reflect on our friendship and what G. offered me by way of fun and laughs, and also serious learning, now that I deal with my own various barriers.
Some years ago G. and I were at a meeting in downtown Chicago. Being German, G. felt it important for us to repair to a bar he knew for some beer. It was a very cold winter evening, so we opted for the Loop Line of the Chicago elevated train. The bar was roughly opposite our starting point on the – well – loop of that line.
The first station wasn’t accessible to a person using the kind of assistive device that G. used. We walked a couple of blocks to the second station, and could get to the train platform, but not off at our destination station, so we went to another station. There we could get most of the way but not entirely down to the street. So we went back up to the elevated station and kept onwards around that loop.
After ninety minutes of looping and going down and up again and again, we had passed our hotel and the bar twice. Finally, very cold, we gave up. We made up the drink in a hilarious episode at a bar in Boston a few years later, but that’s another story.
That night in Chicago, I considered myself someone who was sensitive to “the rights of the disabled.” Just as I was concerned about the rights of gays and lesbians and transgendered people, African Americans, women – whole inventories of persons who are at a disadvantage in our world because of their identity.
Identities I do not share.
Now, I have daily challenges out in the “able-normative” world because I can’t function in parts of the infrastructure, owing to having myasthenia gravis. Some of the barriers are physical ones, but frankly they are pretty cut and dry. The barriers that really thwart me are the outlooks of good-hearted people like me, who want to be sensitive to my needs, who want to help me.
“LEARN TO ACCEPT HELP” I am told, over and over. Do I want to live in a hermetic universe unencumbered by the supportive assertions and exertions of people who intend nothing but the best for me? Years ago G. introduced me to some wonderful people from a group called Not Dead Yet, mostly lawyers and educators who had been born with very different physical manifestations from the norm. This organization, which opposes euthanasia laws, is where I learned the slogan, “Nothing about us without us.” It struck me as understandable that no one else could accurately represent their experiences, but bordering on self-defeating to insist on control of the conversation with/about/for them. Now my mind is changing.
When my wife Mary got sick with ALS and became more and more disabled, unable ultimately to move or even breathe without assistance, I was her principal helper. As her illness progressed, my role increasingly included fending off the well-intentioned people around us, from family and friends to medical personnel to total strangers, who barged into a helping stance that was often inappropriate, even dangerous, frequently humiliating. The bruises and busted equipment were nothing for Mary to deal with in the face of the clueless assaults on her dignity.
Now with my own neuromuscular illness, I was recently knocked down by a helpful citizen in the drug store, and have been choked several times by uninvited helpers. One guy I barely know offered to come into the bathroom with me. The list goes on, and I want to assure you that in all the learning I’m doing about my illness, having some humor about well-meaning insensitivities is high on my list. I can’t go around growling at everyone.
I may be less abled than I was that cold night in Chicago, but I’m still not the same as my buddy G., just as all people in any category can’t reproduce the experience of others in their social clump. In our knit-together society, we’re still all individuals.
So how can we help people around us? I need and increasingly enjoy assistance. I believe fervently in the social contract: a society that includes laws to protect the vulnerable, and rules to promote the welfare of the various beings with whom we share our world. How does my pro-social stance square with a slogan that repossesses identity so fiercely: Nothing About Us Without Us?
Stay tuned as we look into this apparent puzzle in the next blog post.