Valentine's Day, 1992. It rained harder that day in Oakland, California, than it had for fifty years. Sheets of water cascaded onto the ground. Visibility was laughable. You couldn't inch outside without getting drenched.
My daughter took the same bus home from school every day. For two months she had no problem getting home. Today, she got lost. She couldn't see clearly through the pelting storm and didn't get on the right bus. I heard the phone ringing as I came in the door. Could I pick her up at a gas station? She described her ordeal. When she realized she was in the wrong neighborhood, she knocked on several houses. No one was home. Finally, she waved a car down. A nightmare for a young teenager in a new city. We praised her creativeness and clear thinking.
A couple of hours later, we ordered pizza instead of going out for our planned, elegant dinner. When the pizza arrived our friend Ann invited the delivery person inside to celebrate with us. He looked at her in disbelief. What could anyone be celebrating on this day?
Valentine's Day. 1992. Five years ago. Seven of us gathered in our living room, in front of the fireplace, as Lillian and I celebrated the formal union of our lives together, in a quiet, romantic wedding ceremony.
Not quite a year earlier we went out for the first time. It wasn't a date. I was still new to California and hoping to make more friends. We went out to dinner. And talked with ease. Much of it about relationships. We were both recently removed from entanglements more problematic than fun. We shared that neither one of us ever wanted to get married again. In fact, we weren't even certain if we wanted future relationships. And if we did get involved we most definitely did not want to live with the other person. We were both quite clear on that point. We talked about our dream houses. They were exactly the same. Right down to living by ourselves. Alone. And we liked it that way.
A month later we were living together. A year later we sat in front of the fire in our cozy living room getting married. In so many ways, we are your average couple of the 1990s, born in the early fifties. Like other Baby Boomers, we married in our early twenties and divorced in our early thirties. Between us there was one child--perhaps less than average. We both worked. We struggled to survive on the incomes we generated. We liked similar music and movies and meals. We were comfortable in similar social situations.
But we were also unlike many of our peers. We both had significant disabilities. Lillian used either a crutch or her wheelchair to get around. She has this mysterious, exotic disability that doesn't have a name. Born with dislocated hips and hyper-elastic joints. She's had over twenty disability related surgeries and spent about seven years of her life in hospitals. She has plenty of scars to show for it. The arthritis which results from her condition causes her lots of pain. To which I relate. My disability, Gaucher Disease, a genetic, metabolic condition showed up first when I was six. I am missing an enzyme which breaks down a fatty cell. In my case, the cells that don't disperse wreak havoc throughout my body. I have broken just about every bone you can think of. Some of them often. Pain and disability is part of our everyday lives.
Movement of any kind is often a challenge. When Lillian moves she will sometimes come to a complete stop. All she has to say to me is "my ankle." I wait. I know that eventually the ankle will do whatever it must do and she will be able to move again. Other people are startled. Why don't I do something? What can they do? People want solutions. We are much too hurried to await the rhythms of our bodies. We, too, are impatient. But we also know there is nothing to do but wait. So we do.
This dissonance impacts every arena of our lives. Sometimes, more often as we age, sexual contact presents difficulties. Which is unfortunate because Lillian is one of the sexiest people I know and easily the most compelling, desirable lover that I've had. When we make love, in whatever fashion, she is all there, and I have learned things about myself that I never knew before. How sensitive my nipples are. How exquisite it feels to have her fingers, her tongue, playing with their points.
Although I'm the writer, it's ironic that I'm the one writing this article. She's the expert. She's the one who has taken courses on sexuality and disability and taught it all over the world.
One exercise she does is to ask an audience to imagine their perfect lover. How tall? How short? How round? How narrow? What is the color, texture, length, feel, smell of hair? Is their face narrow or round? What color are their eyes? Are their eyebrows thick, thin? What is the shape of their ears? She continues working down the body in similar fashion. She gets very specific and often shocks people when she asks them to imagine their lover's pubic hair and genitalia. Is the hair thick or thin? Coarse or smooth? If it's a man, is the penis long? thick? circumcised? If a woman, are the walls of the vagina large? small? Is the hair neatly shaved and groomed? Untouched? She continues asking specific questions down onto the toes. When she finishes people have a specific fantasy image of a physically perfect lover. She then asks the audience to think about how many people they have been attracted to who fit their description of their imaginary lover. Usually not too many. These days she uses me as an example to say that she never thought she would be attracted to a tall, slender man. My own fantasy lover has always been a woman with red hair, yet I've only dated one such woman in my life.
Our images of perfection come from magazines, books, movies, television, that are themselves fantasies. How many of us have seen our movie screen idols up close? If you have you know that most of the time they do not meet their screen image of perfection. Somehow we forgot about tricks of make-up, photography, editing, brushovers and all kinds of techniques that make us look different than reality. Yet these figures of make-believe become our sexual icons.
People with disabilities who have obvious and subtle differences from our movie star fantasies often feel left out in the cold when it comes to looking and feeling sexy.
When I train, I sometimes ask for positive and negative stereotypical descriptions of people with disabilities. I get long lists. Most often, sexuality is not on either list, until I ask about it. We have bought into the stereotypes ourselves that we are asexual or hypersexual, but very often we forget to think of ourselves as sexy.
Many of the most attractive, sensual people I know are ones with disabilities. I think of the woman I once longed for. She had gorgeous brown hair with lots of curls. A curvaceous body. The fact that she was paralyzed made no difference. After months of working up the courage I finally asked her out. We met for dinner and I was ecstatic. We seemed to have a good time. As we said goodnight I asked her out again and she agreed. She never showed up for that second date. In fact, she didn't remember it. As it turned out, she was probably drunk or drugged the whole time we were out. She barely recalled that we had a date. I still found her physically attractive, but I no longer had a desire to date her. Her disability didn't get in my way. But her lifestyle did.
I share this story because what it says to me are that people with disabilities are like everyone else when it comes to love. We all need and want it. We search for romance in a variety of ways. Sometimes it works; sometimes it doesn't.
Disability, in and of itself, is neither a deterrent toward sexual longings nor any kind of automatic repellent toward prospective suitors. People with disabilities, like everyone else, desire romance and love, touching and feeling. Some people, I suppose, would be less surprised to discover we are sexual and romantic beings than they would be to consider us desirable. But if we would spend a moment to think about standards of beauty we would realize they can change drastically from generation to generation, society to society, or culture to culture. In late nineteenth century America, for example, a beautiful woman was generally far heavier than today's slender models. Clothes, hairstyles, skin tones, and other characteristics of beauty have changed often during my relatively short life-span.
Some individuals with disabilities exude sensuousness and sexual desirability more than their nondisabled counterparts. Some don't. Just like intelligence, athleticism, creativity, and all of life's characteristics.
About a year ago I met a woman at a workshop. Shortly afterward, we met again at a national conference. One of the highlights of this annual conference is a musical social. As someone who loves to dance I make it a point to attend the event. This woman was also there. It was her first experience among a lot of people with disabilities in such a social situation. She concluded after her evening there that people were looking to score just like in any other social situation. And she also noticed the dynamics you see everywhere else: sometimes people were mutually attracted; sometimes they were not. But there were a lot of different people on that dance floor and in that room with a lot of diverse disabilities who had no trouble projecting themselves--or being perceived--as highly desirable--and desired--sexual human beings.
The stereotype of a person with a disability is that we are weak, dependent creatures. Those of us who live with disability know this to be untrue. Indeed, the opposite is more often the case. We are strong, fiercely independent beings. We have had to be to survive in this hostile environment we find ourselves.
This holds true in love and sexuality as well. When Lillian does trainings in sexuality, she describes sexual pleasure and the numerous ways we attain it. My favorite story is about the person with paralysis who comes when stimulated on a sensitive spot on their elbow. Their elbow? Yes, we have all kinds of erogenous zones. Most of us just don't know how to find nontraditional ones. Like much else with disability, it's a matter of experimenting until we find what works for us.
Isn't that what sex and love and romance and life are all about?
SCARS I lie
another's verse. Haunting voices--
but mostly my own;
in an unstoppable cacophony.
A meteor exploded
I am a poet.
whatever I can.
Too old, too bold, too young no more to reach over to the fiercely asleep mystic warrior and fondle her nipple.
Lying sweetly atop, beside along with her curvaceous mound; so succulent I can taste it wafting along the pores of my mouth tantalizing taste buds.
Fantasizing quickly, moving along to other imagery: the thick long scar along her thigh, which I love and long to touch despite the misplaced nerve endings the strange sensations; the always-itching tiny, but hardly invisible, hole in the small of her back mark of another's doctor's belief in his own poetry; war wounds of a kind only a veteran of another's scalpel understands.
so many images, ideas, plans
I can hardly wait to share; to move through the morning routine to sit at last in front of the blank screen and make my own scars on its easy tableau.
"Scars" is reprinted from Voyages: Life Journeys: Poems by Steven E. Brown, available from http://hometown.aol.com/sbrown8912/index.