An unfinished body

Off Our Backs, Nov/Dec 2002 by Mack, Kelly

women and disability

I was female first. Later, while I was still little, I developed arthritis. I cannot remember a time before swollen joints and stiffness because I was a small child when it happened.

When I moved into adulthood I became more aware of external perceptions of my body from the comments of strangers, of society. I was a broken body and not a person, not a woman. Doctors saw me as a problem to be fixed. Others saw me as a defective part to be thrown out. I struggled to declare my humanity and to be seen as a woman.

Being a part of a women's community became increasingly important to me. It reaffirmed what I know myself to be and it helped me stay in touch with my own physical reality. My feminist beliefs grew as I aged, as I increasingly felt my difference from others in my disabled body, in my female body.

I constantly feel pressured to fight the erosion of other's expectations. As a group, women are tortured and maimed to fit into the small expectations society has constructed. Feminists, everyday women fighting against these limitations and living their lives as they see fit, are the guardians of a woman's humanity, a woman's right to be whatever she wants to be.

But the warriors for disabled women are uncelebrated; our bodies are ignored and desecrated. A disabled female body is not coveted like the women of magazines or movies; it is hated, feared, and ignored. To be a disabled woman is to be reminded that I am not able-- bodied enough to even be a woman. To be disabled means to not have a body of worth. To be a disabled woman means to not even be worth society's expectations fo conformity and femininity.

It is strange to me that the equipment I use to navigate my disability becomes a substitute for my body. People call me "the wheelchair." Several times on the bus, the driver has said to the passengers "make room because the wheelchair is debarking." Each time I am puzzled for a moment, trying to think where my wheelchair is going without me. Although I am accustomed to being viewed as an inanimate object, it still confuses me, catches me in moments of uncertainty.

In response, I protest every day. It is exhausting, but it is important that the point be made. So I get up, get dressed, go out, and protest. I try to live my life as I see fit, break down the barriers that are constantly erected, and reject these boundaries that are drawn without my consent. I refuse to accept the social misnomer, that I am merely a faulty vessel or a woman with no body.

But what my head knows is not always what my heart believes. Daily life becomes a battle of passion, maintaining what I know to be true and taking the steps to secure my faith in this truth. So, I struggle because I am surrounded by doubt, by ignorance, by fear. And I have to fight against myself, against my own internalization of society's disdain.

I am still working at honoring my femininity, at respecting my disability. And these struggles of identity are accompanied by many others. How do I establish my presence so that I am seen and respected? How do I express myself as a sexual being? How does my unique womanhood coincide, conflict, and reject socialized notions of beauty? There are too many questions to answer and I have a feeling that it will take a lifetime to come to any conclusions. Perhaps the resolution that I am seeking has to do more with educating people about these questions and not so much about solving them. It is about confronting others with these uncertainties-with a reality that is different from what they had accepted. Sharing my experience as a woman with a disability, I no longer feel so alone and isolated. I seek companions in my quest.

If all bodies are imperfect, if women's bodies are all beautiful, if beauty lies in uniqueness and originality, then my body must epitomize all bodies. It is where women can reconcile being feminine and being unique. My body is feminine and graceful because it defies expectation and explanation. It has passed too many trials to name and yet it still revels in life.

Acceptance is something I work at every day, because the key is to find it in myself, to keep this fire burning and not let it go out. I feel the embers in my belly, the knowing of myself and my body. Sometimes the flames are high and the world cannot cool it, even on a bad and oppressive day. But other times the flame is low and I shield it with my hands to keep cold wind from blowing it out, and myself preserved for another night. It is most easy to accomplish this knowing of my body when I am alone. I see my worth best when it is not obstructed by the gaze of fear or pity, when I am secure in my own thoughts and surroundings.

I want my body to be strong, like a vault. But I do not want to be locked, to be inflexible and stubborn. I want my body to be seen and not ignored. I want to be secure in the knowledge that my body is not worth less than any other body. I want my body to share its lessons, its strengths with other women so that when they see me, they know that they are not alone. That I am a warrior, like them. That the fire burns in my belly because my body sustains the flame.