I was once invited to an Arts and Disability festival in Veracruz,called Encuentro Expresiones. It was awesome. Deaf actors told their story through sign language which was then partly translated into Spanish. The clarity and playfulness of the performers, their ability to transmit the essence of an emotion with a single expression and gesture, was astounding. There were also blind singers playing salsa and typical Mexican music -- they were so spirited the crowd was dancing and romping all over the place, and the band didn't miss a beat. Young men and women with down syndrome danced folkloric dances with a sincerity and tenderness that was palpable enough to melt a cynic. Jorge Font talked with impeccable eloquence on the journey of fulfillment through sacrifice -- the process of adjusting to a limited level of physical mobility after an accident and finding strength, independence, and the love of his life within that new beginning. He has been married for quite some time now, a proud father and a big inspiration to all of us. I read my poetry.
The most invigorating thing about the festival was the sharing of art, not to inspire pity compassion or charity in people, but simply to share ourselves with the world. I could make many interconnections between distinct disabilities, sharing sharing laughter, struggles, and information.
FRAGILITY (?) AND DISABILITY
Lexi Luca, an extraordinary workshop leader who break dances on crutches elevating himself up and doing impossible twists with his arms and back, invited us to dance with him on the main stage. Below the stage there was a pretty sharp drop and a few feet below a little platform were actors could step onto the stage. Below that was the hard cobbleston ground and the tremendous roaring crowd. When it came time for me to do my solo dance I crawled on the stage floor after a little while of dancing in my wheelchair. I could see in peoples expressions a look of surprise.
I suspect that some people unconsciously assume that being in a wheelchair means being stuck in it twenty four seven. That varies depending on the person. People who don't know my level of mobility are often extra careful to offer their assistance when I am transferring from one chair to another or from a car seat into my wheelchair and even hold me when I say I can do it myself. When I lie sprawled on the grass reading a book often passersby look at my empty wheelchair with confusion and ask with a tone of grave concern " Are you Okay? Is everything all right?" When I say I'm reading in the sun or meditating I've noticed a faint smile of recognition dawning on their faces.
Sometimes when friends or acquaintances push my wheelchair or lower me into a pond or a pool of water a phrase I've heard is " Tell me if anything hurts" or more directly " I'm afraid to hurt you." They are often surprised when I get into the deep water and start swimming with ease into the distance. A friend of mine who is a physical therapist in Mexico admitted to me that when she first started working with people in wheelchairs she was afraid we were like porcelain cups that could shatter into a million pieces if we were not handled correctly. Now she finds the thought amusing. That's not to say that people in wheelchairs don't have serious limits in their mobility or sensitive spots but usually we are pretty confident about gaging our limits and asking for help when and how we need it. I accept the generous help and interest from fully mobile people in their quest to assist me and also ask them to be a little more trusting in our ability to verbalize our own needs.
THE DANCE PERFORMANCE EXPERIMENT
I had suspected that some peoples assumptions about my fragility were quite strong but I wanted to do an experiment to test just how deeply rooted they were. So in the Lexi Luca dance I crawled to the edge of the stage as part of my dance and then allowed my body to gracefully slide down onto the second platform right below it. Then I crawled to the brink of that with a big smile on my face and poised myself there. Several hundred people were at the festival outdoors in a section of the market and suddenly it grew so quiet you could have heard a pin drop. Simultaneously people stood up and started dashing to the stage in a panic. I could hear voices shouting : "quick: he is going to fall! whats he going to do?"
One of the organizers of the conference admitted later that evening that he had to go the doctor and take some tranquilizers that night to recover from the shock. Just as the audience was about to grab hold of and "rescue me" I slipped out of their grasp and hoisted myself smoothly back on to the center of the main stage and continued to dance, visibly enjoying the music as if nothing had occurred. Several audience members asked me: "Did you intend to that? I answered somewhat obliquely in the hopes of engraving the question in their minds through the use of mystery."
WHAT DOES ALL THIS HAVE TO DO WITH SEX?
The assumption of fragility can contribute to the idea that we are ethereal beings with very delicate bodies that could be hurt during sex. Who would have sex with a porcelain cup that could at any moment break into a million pieces? The few times in my life that I have had sex, more then once someone has asked: What if I hurt you? Am I too heavy? Slowly the women I was involved with grew more comfortable with following their impulses and trusting my ability to tell them if something was too much. Even then, I noticed, as with any relationship, it takes time to reach a balance of trust, confidence and mutual curiosity.
Another pattern at play is the perception that because I am in a wheelchair I am not only more fragile physically but emotionally as well. In other words the thought that if someone were to date me, have a relationship, and then break up with me they could hurt my feelings more because of the perceived extraordinary adversity often associated with disability.
My first serious girlfriend (now a friend) expressed a strong fear that if she left me I would be devastated and that my parents would resent her for it. I think gradually she came to realize the hurt I could experience was no lesser or greater than what a "normal" person would feel in a break up. Her initial certainty that she would be the one to break off the relationship when and if it happened also was revised as we deepened our bond. She could leave me, or I could leave her or it could be a mutual decision.
A LITTLE SIDE NOTE
Have you noticed in airports, when someone in a wheelchair boards a plane and transfers to an aisle chair he or she is always strapped in? And not just strapped in - the amount of seat belt material around their torso waist and legs is enough to evoke the image of a convict chained on his way to prison. Do you know what I mean?