By Joy Weeber
For most of my life I didn’t think of myself as a disabled person. After all, I could do whatever I wanted to, galumphing along on my crutches. Being able to walk let me pass as nondisabled–a fantasy reinforced by never looking in store windows as I walked by, and by nondisabled people who told me they didn’t think of me as handicapped. Living in denial kept me ignorant of what my walking actually cost me physically, emotionally and spiritually. I never showed my fatigue-induced depression. Those around me saw only the up-beat crip “truckin’ on!”
This changed when I was 30, the year the kitchen cabinets fell on me. I responded to that accident just as I responded to my polio–pushing through pain and fatigue, never giving in. But my survival strategy didn’t work this time. Only later would I realize why I adopted such a survival strategy in the first place. I also learned later from a child psychologist friend that this is a typical survival strategy of abused children–escape to the mind to get away from what is being done to you. And above all else, keep on going.
I finally found a physical therapist who not only could deal with my non-normal muscles and back pain, but also understood the polio rehab brainwashing that sets many of us up to be type-A personalities, always pushing ourselves, never acknowledging limitations, hooked on accomplishment. Mostly, though, this physical therapist respected my body, unlike the orthopedic doctors who saw me as a collection of defective body parts.
Like a Zen master, he taught me to listen to my body’s signals of pain and fatigue, to be gentle with my body and accept the fact that I had limits. He never discussed why we were doing what we were doing because he wanted me to stay out of my head and focus on my body. Working with him helped integrate my mind, body and spirit.
I experienced Taoist and Buddhist spiritual lessons doing my exercises. I learned to live in the present and not work for some future goal–just doing the exercises was good enough, the future would take care of itself. I learned to not act with desire–the thought of being out of pain was too far in the future to be a viable motivation. He also taught me there are medical personnel who could honor my whole self–I did not have to live in fear of the other kind.
After two-and-a-half years I was healed enough to go to an orthopedic doctor’s office without an Uzi. I knew I found the right doctor when I was given a 13-page questionnaire on my emotional and psychological state of being. Having a fifth and sixth back fusion was hard as hell to face, but at least I was working with medical personnel who respected and honored the whole of me. The doctor’s psychologist even reflected back to me the horror of my childhood experiences in Shriners Hospital-the first time my feelings about that time had ever been validated.
My parents were not allowed to be with me after my childhood surgeries, so I begged them to stay with me this time. I didn’t want to be strong all by myself again. One morning I woke to find an unauthorized Duke orthopedic resident had lifted my gown and was voyeuristically viewing my naked body, and I was able to curse him out roundly.
As a Taoist/Buddhist/Quaker, I could say that the cabinets falling off the wall was the best disaster that ever happened to me, but I still had not connected the dots between this “temporary” back problem and my having lived with a disability all my life.
After five celibate years of pain, I found myself struggling with my sexuality again. Throughout my adult life I mostly kept men at arm’s length with my supercrip-one-of-the-guys persona, a woman no one would dream of offering to carry groceries for, much less kiss. Other times I found myself complying with some man’s designs on my body in a way that felt dishonest, like a violation and not at all adult. I headed to the public library in search of answers and found Pleasure and Danger: Exploring Female Sexuality.
I first read “Histoire d’O: The Construction of a Female Subject,” a feminist essay describing how a woman was ritualistically reduced to seeing herself strictly as an object of male sexual desire, defined and controlled by the members of a secret male fraternity that “owned” her. The ritualistic acts perpetrated on this woman included being suspended from the ceiling naked with her lips and labia painted red to underscore their importance to her “owners.” She was regularly scarred by whippings to mark her as the fraternity’s property.
I then read “The Myth of the Perfect Body,” by Roberta Galler, a disabled psychotherapist who had also had polio. Her words helped me understand that one reason I became the untouchable supercrip was because there was no way in hell I could be the pathetic, dependent, grateful, cheerful crippled woman society scripted me to be.
Galler’s essay taught me I was part of a strong, affirmative disability community that could honor me as a disabled person, and not because I “overcame” my polio. Her words showed me my disability was an integral part of who I was–a source of strength and wisdom I hadn’t acknowledged. Another reason I became a supercrip was explained by her statement that how our bodies are looked at, commented on and handled by caregivers and health practitioners shapes how we view ourselves sexually as disabled women.
In a flash I saw myself as a young adolescent suspended virtually naked from the ceiling of the Shriners Hospital cast room, time and time again, like the woman in “Histoire d’O,” while male Duke orthopedic residents wrapped hot plaster around my body, talking about me as if I didn’t exist. I saw myself stripped naked by those same residents when they cut those casts off of me with the doors of the cast room wide open for all the world to see. I saw my body parts handled and talked about as defective during their freakish rounds in which I, as a person, went routinely unacknowledged. I saw myself scarred by orthopedic residents practicing surgical techniques on legs I knew would never be normal, like the woman in “Histoire d’O” was repeatedly scarred by sadists to mark her as property. Those doctors taught me my body was not my own and what I felt inside had nothing to do with what was done to me on the outside. That’s why men felt dangerous–I had been schooled in the role of silent compliance. In denying my full humanity, the doctors left me numb and vulnerable to violations by others who had their own designs on my body. I was alienated from myself, my body, and my right to determine my own body’s boundaries.
Later a nurse who worked at the Greenville, S.C., Shriners Hospital told me that nurses were forbidden to acknowledge the psychological and emotional needs of infants and children, who were only allowed to see their parents two hours a week. The justification? “They just have to learn to toughen up.” What I thought was benign neglect had in fact been systematic, institutionalized emotional abuse. I was sickened all over again.
I finally understood why I became the fierce ice queen, the dick teaser wielding complete, though lonely, control over my body. Keeping men at arm’s length felt like a survival issue–I still felt too much like an object of male medical desire, sacrificed on their altar of normalcy. On a deeper psychic level I generalized the doctors’ behavior to all men who unconsciously live out the dominant mechanistic worldview.
I knew I had to reclaim my ability to playfully take risks, just as I did in my pre-Shriners childhood. I’d learned to listen to my body’s signals of pain and fatigue during the past few years, so I knew I could learn to listen to my intuitive voice. I also knew I was the only person who could make it OK for me to be 15 years old sexually, to give myself permission to have the adolescence I never had–even if I didn’t know anyone else doing it at 35.
I met a gentle man who shared my interest in jazz, blues, sailing, cooking, working on furniture, and so on. It was a lovely adolescence. We are still friends.
In the years since, I found and lost the love of my life, one of our community’s visionary leaders, Ron Mace. I was drawn to his quiet understanding and wisdom. I’d listed qualities I needed in a partner–Ron had all of them and then some. I could not have imagined the wonder of being with a disabled man who understood how I saw the world or my disability experience without a word because he, too, had lived it. He was incapable of bruising me in those places previously scarred by doctors because he’d been scarred there, too.
With Ron, I found an emotional, intellectual, political and spiritual home that I never had before, and I began to grow. He was water in my nondisabled desert, and accepted me for who I was, even though my disability consciousness was only four years old. Our work and life together was whole and rich. We challenged each other in those areas where we still had blind spots. Through Ron I came to appreciate what it meant to be a contributing member of the disability community.
When we first met I asked him what he did with the anger and he replied, “What anger?” I thought he was in denial, but I know now Ron didn’t waste his limited energy on anger. He transformed it into his lifework of changing architecture.
When he died suddenly, I was shattered and lost. I raged at the doctors who had medically abused Ron as a child–as they had me–and taught him to devalue his body. I raged at the cultural prejudice that teaches us all to push ourselves beyond what is honorable to our bodies in order to prove society wrong. I raged until I was sick of my rage.
Six years after his death, I can now rejoice in the memory of our love. Ron used to tell me I didn’t scare him, and I used to tell him I loved him, I loved his body, but above all I loved his limits–they were the source of his wisdom and strength.
I am still learning to live life without him, though it doesn’t feel like strength yet. In sharing my own struggles with medical abuse, I hope I am beginning to transform my rage into some kind of wisdom that may benefit others in their own struggles.
Joy E. Weeber received her Ph.D. in Counselor Education in 2004 from North Carolina State University and firmly believes that the personal is political.