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Stephanie Sugars
Welcome, dear friends and guests!

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My Body As Other: ILLNESS IN OUR COMMUNITY

My young lesbian self

1979

xox

My Body As Other: ILLNESS IN OUR COMMUNITY

By Stephanie Sugars

Common Lives/Lesbian Lives

Number 5, Fall 1882

I live and love in a lesbian society. I’ve joined my life to other women’s lives to create a new world safe for lesbians to grow in. I have a strong commitment to the change we’re involved in.

I am also an ill woman. My life has been shaped by illness.

In the women’s community I’ve run into many different yet inter-related ableist assumptions/attitudes. Illness is a hidden disability and has been ignored, denied, and rejected. Lesbians have adopted many ableist assumptions/attitudes from patriarchal institutions that are harmful to ill women. By exploring oppressive behavior, we can hopefully begin to change it. I have identified some of the ableist assumptions I’ve encountered in the lesbian community to give you a chance to think about them.

Attitude I: We are all young and strong dykes fighting back against that which is different from us. We demand/assume homogeneity in dress, attitude, culture, and body. We must be identifiable for us – and others– to recognize dykes as an effective force.

Attitude II: We are survivors. Abusive institutions and individuals have battered us and attempted to separate us from each other and our bodies. We are taking back our lives, are learning to be strong, resilient, focused women living free from that which has (in the past) bound us.

Attitude III: The patriarchy has controlled our bodies for centuries. As we take control over our bodies, balance will be restored. Dis-ease (which comes from the patriarchy or somewhere else) will be eliminated and we’ll all have control over our bodily functions.

Attitude IV: “Have you tried this diet? Seen this type of healer? Done your exercise? Expressed your emotions? Eaten your herbs? Done everything your M.D. ordered? Have you really stuck to it?

“You have? Well, you must be doing something wrong, or not enough, ‘cause I can see that you’re still really hurting and anyway, I had this cousin with something like yours, and she was cured when…”

Attitude V: “Oh wow, you’re in pain most of the time? You’re fatigued? Don’t function right? Hmm. It must be horrible to be like that. You’re such a nice person. It’s funny, you don’t look sick. Can I do something to help you?”

Everyone of these attitudes has an assumption of control. We expect each other – and collectively – to be in control of our bodies. When the denial is broken through and illness acknowledged, the ill woman is often blamed or pitied. Like the rape victim, she is often burdened with other people’s pain, fear and guilt.

Society heaps hatred on people (especially women) who are viewed as out-of-control. Because illness is not immediately recognized, the ill woman never knows how or why she will be rejected. This creates a schism within the ill woman that is extremely hard to live with. Many women (fat women, old, disabled – illness is not mutually exclusive to any other attribute) are rejected before any other interaction. The oppression is different.

Nothing with is me could cause me such pain.

My mind separates from my body. Mind-body dualism. Mind controls, denies, dominates, and disclaims body and bodily functions. Illusion of safety is bolstered by the absence of pain in my imagination. I do not feel illness.

Body rebels. Exacerbation of symptoms. Pain pours back strongly, intensely demanding recognition.

My being reacts with outrage and despair.

This cycle has continued for years.

The way I am now able to effectively interact with my body is to give up the idea of control. I am not a beast to be tamed. I believe that my body has its own motives, responsibilities, and integrities.

Giving up control has meant realizing my restrictions and accepting them. It has meant constant commitment to my rage, patience, humor, change, spirituality, acceptance, and creativity. It has meant being open to women close to me and ending the hiding, denying and protecting of them.

I fight daily for participation in my life. Economic survival, planetary survival, proliferation of harmful chemicals, M.D.s, hospitals, and social welfare are all threats and issues which require awareness and action.

During the past year I have been involved in two groups that have helped me considerably. One is Operation Concern’s disabled lesbians group in San Francisco and the other is a group for ill and disabled women in Sonoma County, CA. With thee women I have found courage, understanding, rage, support, tears, space, advice and stories. They have not let me run from myself.

Illness is part of my life. It always has been. It forces me to recommit myself to my life and all life. Through it I have an understanding of my connection with nature. Acceptance has freed me to get on with life and political work in a healthy way. I am learning how powerful I truly am.

So you want to be accessible.

For the chronically ill woman there is often no expected date of recovery. An ill woman can be expected to lie low for only so long before going out politically or socially. It often takes months to find groups, events or spaces suitable for our needs.

FOR YOUR EVENT:

A wheel chair ramp and a signer do not necessarily make an event accessible. Here are some hints: provide a quiet safe space out of the sun and cold for women to rest (cots are helpful, but at least pillows and blankets). If possible, have events be non-smoking. If not, put non-smoking areas away from smoking areas. Consider avoiding long marches through smog-filled streets. Well marked, nearby toilets are a must. Try to have at least some food, water and non-sugar non-caffeine drinks on hand.

FOR YOUR HOUSEHOLD OR COLLECTIVE:

Equal to you is not equal to an ill woman. Stamina and physical ability differ. Don’t assume that because a woman is unable to do particular types of work or as much work, she is not committed and “won’t do her fair share.” Many women have thrown their bodies into a wrecked state attempting to do what seems like a “little bit of work” to the able-bodied woman.

Think twice about meetings. So many meetings seem to be endurance tests; the one left standing wins. Some things to think about are: shortening the agenda, sticking to allocated times, taking breaks and eating a little food.

FOR THE TEMPORARILY ABLE-BODIED WOMAN IN INTERPERSONAL RELATIONSHIPS WITH ILL WOMEN

Don’t deny, protect, power-trip, blame, pity, condescend to, idolize or homogenize your ill friends. Do talk, ask questions, explore your own reactions, don’t project your fears onto others, but do express your anger. Think twice. Don’t assume you know what’s best for an ill woman. Most of us are the authorities on our conditions. Ask us what we want/need, determine what is best for you to give and get on with the friendship.

I found these resources helpful in reclaiming my reality as an ill woman: Nice Jewish Girls, This Bridge Called My Back, Off Our Backs (May 1980) and various articles in women’s periodicals.

P.S. Please think twice before dousing yourself with strongly perfumed oils, scents and lotions. Many ill women are sensitive to chemicals and scents and become nauseated from the smell.

Stephanie Sugars: I am a cyclically ill, young, white, working class woman living in rural Northern California. My time is filled with reading, resting, friends, political, feminist, and anti-war education and action and a half-time bookkeeping job. Because this is the first thing I ever wrote about illness and it is addressed to the lesbian community, I left out a lot of very important things about illness like: Hospitals, Medical Deities, SSI/SSDI, other forms of economic survival, drugs, death, media attitudes toward illness, illness in literature, depression and despair, Reaganomics, “professional attitudes” toward ill people and class attitudes. I do not feel well enough thought-out about any of these to write about them now. I do hope they will be dealt with at some time. I would like to live to see the world change.

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