Sinister Wisdom 39
Winter 1989-90
Editor and publisher: Elana Dykewomon

Editorial readers and advisors: Barbara Ruth, Betty Dudley, Caryatis Cardea,
Cath Thompson, Jasmine Marah, JoAnne Rome, Lisa Carlin, Marlane Cook,
Naja Sorella, Susanjill Kahn, Susan Levinkind, Valerie Stoehr, Winn Gilmore
Contributing editors: Gloria Anzaldua, Irena KJepfisz, Melanie Kaye/
Kantrowitz
Typists and proofreaders: Cath Thompson, Caryatis Cardea, DeeAnne
Davis, Kit Quan, Susan Goldberg, SJ Kahn, Susan Levinkind, Valerie Stoehr
Office help, correspondence, ads and accounting: Cindy Cooper, Caryatis
Cardea, Nina Wouk, SJ Kahn, Susan Levinkind
Thanks to Bobby Rothschild and Rebecca Kutlin of Tamed Technology
Distribution and mailing: Caryatis Cardea, Cath Thompson, Cindy Cooper,
Debbie Fier, Dolphin Zelda Waletzky, Elizabeth Fides, Jasmine Marah, Kim
Swineheart, Leann Gustafson, Leslie Baker, Lisa Carlin, Marlane Cook, Susan
Goldberg, Susanjill Kahn, Susan Levinkind, Valerie Stoehr
Reader for the Womyn's Braille Press: Judy Freespirit
Cover art: Safeway by Jane Philomen Cleland

SINISTER WISDOM, founded 1976
Former editors and publishers: Harriet Ellenberger (aka Desmoines)
and Catherine Nicholson (1976-81)
Michelle Cliff and Adrienne Rich (1981-83)
Michaele Uccella (1983-84)
Melanie Kaye/Kantrowitz 0983-87)
Copyright © 1989 Sinister Wisdom. All rights reserved to individual artists and authors.
ISSN: 0196-1853

Sinister Wisdom· PO Box 3252 • Berkeley CA 94703 • US

Pat Parker lived from January 20, 1944
until she died from cancer on June 17, 1989.
This issue of Sinister Wisdom is dedicated to her:to the spirit she shared with us,
to her spirit that goes on,
informing our work and our love.

Love Isn't

I wish I could be
the lover you wantcome joyful
bear brightness
like summer sun
InsteadI come cloudy
bring pregnant womenwith no money
bring angry comradeswith no shelter
I wish I could take you
run over beaches
lay you in sandand make love to you
InsteadI come rage
bring city streetswith wine and blood
bring cops and gunswith dead bodies and prison

I wish I could take you
travel to new lives
kiss nifios on tourist buses
sip tequila at sunrise
InsteadI come sadbring lesbians
without lovers
bring sick folk
without doctors
bring children
without families
I wish I could be
your warmth
your blanket
All I can giveis my love.
I care for you
I care for our world
if I stop
caring about one
it would be only
a matter of time
before I stoplovingthe other.

Reprinted from JON ESTOWN & other madness, published by Firebrand Books,
1985, reprinted by permission of Pat Parker's literary estate.

A Journal for the Lesbian Imaginationin the Arts and Politics_________________ Contents
1
5
9
10
11
14
18

Pat Parker • Love Isn't (poem)
Elana Dykewomon • Notes for a Magazine
Notes on the Themes (upcoming issues)Contest winners
Barbara Ruth • Pelvic Mass Etiology (poem)
Amy Edgington • A Medal For Not Drowning (narrative)
zana. going shopping (narrative)

§§§
23
34
35
42
45

Susan Hawthorne • The Adventures of An Epileptic(narrative)
Diane Hugs • Who Needs a Perfect Body? (poem)
JoAnne Rome • Untitled (narrative)
Barbara Dinnerstein • Hey, Who Turned Down The
Sound? (narrative)
Teresa Myers • from My Worst Fears (poem & narrative)

§§§
47
51
53
64
66

Naja Sorella • Quality of Life (narrative)
Pamela Pratt • Bump (poem)
Jackie Winnow • Lesbians Evolving Healthcare: Our Lives
Depend On It (speech)
Mandy Dee • Night (poem)
Adrienne Lauby • This Mirror's Not In A Bar (narrative)

§§§
70
72
73
77
79
80

Naja Sorella • I Want To Love You Hot (poem)
Sandra Lambert • from Disability and Violence (essay)
Diane Hugs • Where Have All The Lesbians Gone? (essay)
Teresa Myers • from What's It Like to Be Blind? (narrative)
Tee Smith • Hallowmas Circle - Trapped Inside My
Body (narrative)
Patti Overland • Fever (poem)

82
87
89
91

Jasmine Marah • Dyslexic Dispear (narrative)
Ayofemi Stowe Folayan • Dyslexia (poem)
Susan Hubert • from an untitled essay in progress
Lynda Koolish • from We Are the Canaries: Women,
Disability and Coalition Building (speech)

§§§
94

103
104
108
110
111
118
119

Judy Freespirit • On Ward G (narrative)
Emily Levy • The Swooner (the bedder) (poem)
Naja Sorella • A/part of the Community (essay)
Shemaya Mountain Laurel • from On Becoming A Thin
Woman (essay)
Amy Edgington • Boogey woman (poem)
Denise Sherer Jacobson • American Bandstand (narrative)
Barbara Ruth • Breakup (poem)
Caryatis Cardea • Snapshots of a Decade and More(narrative)

§§§
128
132

136
138

Resources of Interest to Lesbians with Disabilities
Contributor's Notes
Books Received
Ads and Announcements§§§
ART
Cover Jane Philo men Cleland • Safeway (photograph)
13 Peni Hall • Spider Flower (pen & ink)
22 Jane Philomen Cleland • Valerie Brown (photograph)
33 Max Hammond Dashu • Spike and Dome Instant (pen &ink)
41 Max Hammond Dashu • Untitled (pen & ink)
63 Pam de Gaines • from Some Days I have Cancer MoreThan Other Days (cartoons)
75-76 Alison Ulman· Wheelchair Access, A Moment of Doubt andSweet Denial (sculptures)
81 Penni Hall • Crip Fantasy #2 (pen & ink)
109 Max Hammond Dashu • Untitled (pen & ink)

____________ Notes for a Magazine
When I brought the first draft of these editor's notes to mywriter's group, they said I wrote as if I were out of my body. They
said: here's an issue on disability - you've set an expectation of
personal writing for the notes, and you're not located within what
you've written. Write about your own disability, they said, or atleast write about why you're not writing about it.
The topic of disability seems enormous to me tonight. I wantto say the work of the womyn in this issue is enough. Read what
they have to say. Their words are direct, important, immediate.
They address a wide range of disability issues, probing thepersonal and political, sharing intimate experiences and challenging community complacency. While the contributors' viewpoints are varied, we don't intend (and couldn't possibly make)a comprehensive anthology on disability and disabling disease.
This is one issue of one lesbian magazine. What's critical is thatthese topics become commonplace: matters for daily discussion,
basic parts of our consciousness when we do things - plan
parties, go to the movies, organize demonstrations. In putting theissue together, I have felt like its functionary, its technician: trying
to carefully implement the opinions of the editorial group *,working with the writers and other editors to get the clearest,
most balanced issue possible from the work we received.
And the topic still seems enormous. I'm a little burned out
from doing Sinister Wisdom, my life, my typesetting job. I want tothink I have endless stamina, reserves of endurance and patient
resolve I haven't begun to tap. The truth is I am somewhere
beyond my capability and I don't want to admit it. I have different
forms of chronic pain from different sources; I am willful and thepain "isn't so bad, mostly." It's difficult to write about stages of. denial when you're in the middle of them, even if you know you
are. It galls not be able to do what you know you can do because*Over half of the regular group of editorial readers are disabled; several disabled
lesbians joined specifically for this issue. Many of the dykes involved with Sinister Wisdom did a tremendous amount of editing, suggesting and backgroundwork for this issue. In particular I want to acknowledge the contributions of
Carya tis Cardea, Jasmine Marah, Naja Sorella, SusanJill Kahn and Barbara Ruth.

5

you have reached your physical limit, because pain interrupts
you. There's a difference between working up a sweat (even asweat of the mind) and wearing yourself out. Of course I want tobelieve/act as if I can't wear out. Not yet, not when the real work,when the fun of the real work is just beginning.
It's hard not to compare, to say the ways that I'm disabled aresmall next to others, to the womyn whose work is included here.
I have no clear definition of what disability is for myself. No
matter how difficult or painful my life, there are innumerable
women whose lives are harder. The point in making lesbian spaceis to encourage each of us to tell our stories without self-deprecation. It's not about playing queen for a day. Our impulse tocompare and to rank often creates more distance between us,
keeps us from paying attention to what's really going on inside
us. When we aren't paying attention to ourselves, we often end
up resenting other womyn's demands. It's too easy to fear that
there isn't enough room, enough space, enough time. That theones who need it most won't get heard. That maybe the ones inneed who won't be attended to will be us. Or that we'll take thespace away from someone who really needs it with some minor
complaint, and be consumed by guilt for the rest of our lives.
So many factors influence how we experience our disabilities.
Money. Degrees of mobility. Family relationships. Community
structures. Cultural! ethnic/ racial backgrounds. Whether ourdisabilities are progressive or stable; whether they're visible orhidden; whether they're life-threatening; whether they're clearly
diagnosed or mysteries to Western medicine; whether they cause
us pain; whether they break up regular sleeping and eating patterns; whether we grew up with them or they were caused bydisease or accident later in life.
Many dykes want to be independent and self-reliant at any
cost; as women*, many of us were brought up to be dependentand subservient. Disability can increase that emotional frictionunendurably. Whenever we come in contact with an institution
around our disabilities, those institutions demand our imme• I use "womyn" and "womon" for dykes or primarily dyke groups. I use"women" for the constructed class of females in patriarchal contexts, "woman"when I know the woman about whom I'm writing is straight.

6diate submission to their paternalism; often even our well-meaning lesbian health-care practioners want us to follow their systems to the letter - if we don't, well, we bring the consequenceson ourselves, don't we?
I stop and think about how many times I've watched the
medical system steamroll over some womon - in emergency
rooms, new-age doctors' offices, establishment pain clinics, alternative healing centers. Cultural dominance and submission getplayed out everywhere, on every level. A certain hat-in-handattitude is expected of "lay people," of women, of disabled
women even more. Often the result of being subjected to constantpaternalistic crap is for women to fetishize certain things thatappear to be within our control. That is, we fix our attention onsome small, useful activity that we can do (never eating wheat,
meditating to relieve stress), to the degree that we are distracted
from seeing political and social patterns. We get so many double,
triple, contradictory messages about how to take care of ourselves, how, if we're still sick, in pain, uncured, we must be doing
something wrong, it must be our fault. Then we blame ourselves
for succumbing to self-hatred, and the process which keeps us
going in circles is complete.
Sometimes, no matter what we know, our internal voices
insist there really isn't enough room or resources for everyone to
get their needs met and we must be doing something wrong
anyway if we have such pressing needs, but if we're good anddon't complain, the nice doctor will make us all better, you'll see.
Disabilities take place within contexts. Those contexts areusually designed to minimize the presence and the "inconvenience" of disabled folks. In the lesbian community we have, infact, done a tremendous amount of work on access consciousness- many of us agree that community spaces should be ramped,
events should be signed, special seating should be provided forvision-, hearing-impaired and fat womyn, large print programs
and materials should be available, journals and books should betaped, and scents, perfumes and smoking not allowed. But weseem to be carrying out these agreements less, not more, overtime. Is it that we're so self-absorbed we "forget" who isn't with
us? That we've made priorities that exclude each other? That we
7

still hold values about who is and isn't worthwhile, productive,
valuable? Every dyke deserves the option of inclusion in our
events, our struggles, our celebrations. All of us can insist on
inclusion and access, can move our consciousness into action.
As our actions change our lives, our words change ouractions. By far the most common negative metaphors I comeacross in lesbian writing are ablist: "it cost me an arm and a leg,""blind to the truth," "deaf as a post" "lame excuse. * "It occurs to me that the invisibility of disabled people is oneof the reasons these metaphors are so prevalent. There's been a lotof discussion in the disabled lesbian and womyn's presses ** in thelast year on the use of ablist language, how much pain it cancause, how and when we should educate each other. The more weare insulated and isolated, the easier it is to use disparaging,trivializing metaphors. And the more we use those metaphors,
the more our language becomes another barrier to access.
We need to pay attention to every word. The words we use
and the words disabled womyn are using to command ourattention. Start here.

* Certainly disability isn't the only area where negative qualities are attributed
to states of being. Our language is full of images that equate light with good anddark with bad, or perpetuate stereotypes about ethnic and racial groups;
language which characterizes old as weak, sexless, ineffective; careless use ofwords like "crazy"; language which links being fat with being slow, slovenly,
ugly; which equates working class or poor with unmotivated, dirty, stupid. We
encourage writers to accept responsibility for the on-going crea tion oflanguage,
and to apply lesbian imagination to every metaphor.

** See the resource list at the end of this issue for addresses of the disabled
womyn's press. I am particularly referring to articles that have appeared incurrent issues of Womyn's Braille Press Newsletter, and Dykes, Disability & Stuff.

8

____________ Notes on the Themes#40. On Friendship. Wonderful new work on what our friendships mean. Available in April 1990.
#41. The Italian-American Issue: Sinister Wisdom is currently
soliciting manuscripts and artwork from all women of Italiandescent, with a strong emphasis on work by Italian-American
lesbians. Issue #41 will be guest-edited by Janet Capone andDenise Leto. Some themes will include La Famiglia: What doesfamily mean to us? With each generation, how is our culture
being maintained or diluted? Lesbiche Italo-americane: What doesit mean to be an Italian-American lesbian? What factors havecontributed to a delayed understanding of our ethnic and cultural identity? Etnicita: Do we see ourselves as Italian, American,
or Italian-American? What does it mean to be olive-skinned? La
Storia: What are the historical and economic differences between
Northern and Southern Italy? How were the wave of immigrants
from the South and Sicily pressured to assimilate once in America? Stereotipie Culturali: How has the image of the Italian as
criminal or Mafioso influenced actual historical events such as
the execution of Sacco and Vanzetti in 1927 and the mass lynchingof Italians in New Orleans in 1891? La Spiritualita: What is our
spirituality? Was it Catholic? What is it now?
Deadline: February 15, 1990. Send submissions or requests
for further information and guidelines with SASE to Janet Capone & Denise Leto, Italian-American issue c/o Sinister Wisdom.
#42. Open. We have lots of ideas for themes and hot topics - andinvite your suggestions for issues you want to see explored. But
once a year or so we need an open issue for all the great dyke
writing and art that doesn't quite fit the themes. Deadline: June
15, 1990.

Remember to check out the submission guidelines on the inside backcover before sending us your work. Thanks!

9

Contest ___________________________________
It was great, how many dykes took the time to write or typeout the full lyrics of Willie Tyson's song "Did You Say Love?"which appeared on her album Willie Tyson Debutante (Vrana
records) in 1977. I wish we had room (and permission) to reprint
the lyrics - you'll have to dig the LP out of your collection or
borrow it from a friend, and listen again (if you missed Willie thefirst time around, she put out 3 albums, Willie Tyson, Full Countand Debutante - check 'em out). Many dykes wanted to knowwhat happened to Willie ("has to be the women's music artist I
miss the most"), and wanted her to know that they appreciatedher work. Are you out there, Willola?
Winners of a one year subscription to SW (it was a tie): Mev Miller
and Astrid Elsora Bergie.
And thanks to: Sandy Covahey, Evi Beck, Susanna Sturgis,
Peggy Munson, Judy Freespirit, Marilyn Shatzin, Linda Giddings, Jane Meyerding, Nancy Hammond, Selma Miriam, Tara
Ayres, Tina Gomell, Barb Gerber, N ancyOsborne, JEB, Liz Quinn.
(If your name isn't on this list, we got your response after going
to press.)

Subscriptions,_____________________________
Over 1/ 3 of our subscription list expires with this issue! If yourlabel has the number 39 in the upper right corner, that means you.
Now more than ever we need you to resubscribe - and while
you're at it, send Sinister Wisdom to a friend (or two) .
Remember: resubscribe early - and often!

Apology-------------The drawing of "Calyakh Veyra, the Hag of Beur," by Max
Hammond Dashu, which appeared on page 87 of #37, wasinadvertently reprinted without a screen. Much of the detail,shading and depth of the original was lost by this omission. We
apologize to both Max and our readers.
10Barbara Ruth

Pelvic Mass Etiology
for all the people who say or think,"Barbara, why are you doing this? Again?"

I think it all started with moving to Oakland
The fact I took birth control pills for fourteen years
My neurotic desire for a childIt's proof of bad karma in the second chakra
It's related to Halley's comet
Due to the fact I started menstruating earlyIt's caused by the patriarchy
By racismAnti-semitism
Being on welfare
Or maybe it's sunspot activity
It's something I made because I want to be mutilated
It's punishment for enjoying sex too much
The wrong kind of sex
The wrong kind of partner
It's because I eat the wrong foods
It's choosing the wrong acupuncturist
The wrong Chinese herbs
The wrong visualization techniqueIt's too much vitamin C
It's my father trying to make me his son
It's this hard rock of anger
It's blaming myself
It's forgiveness refused
It's being an anarchist under advanced capitalism
It's my tax dollars
Invading Nicaragua
Investing in apartheid
It's not being a tax resister
It's going to jail in South Carolina to protest nukes
More Cesium in their water
Than anywhere else in the world
11And that's what I lived on
It's being kicked in the belly by cops in Philadelphia
And then refusing to let the male ER doctor
Examine my bleeding ass
It's too much resistanceOr not enoughIt's my great aunt kicked in the head
By cossacks' horses
It's my father's family bombed on reservation Redeye
Then sedated by condominium whiskey
It's the persecution of the Peyote church
It's too many psychedelics when I was a hippie
It's something I do
In order to get post-surgical morphineIt's something I do for attention
I do it in order to help
The surgeons work out their karma
I do it to meet the x-ray technicians
I do it in order to write this poem
It' s punishment for being bad
For doing something so bad I forget what it is
But it probably happened before I was fiveOr maybe before I was born
It's afflicted planets in my natal chart
It's genetic propensity
An unlucky roll of the chromosomes
It's having no homeland
Having my homeland taken away
It's forced relocation
It's Big Mountain
It's the Golan Heights
It's Thanksgiving and Christmas
Coming too close together
It's the long nights of winterIt's being battered by people I loved
As a child
As a wife
As a dyke
It's the toxins I breathe
12It's the polar caps melting
It's the Coriolis effect.
I think it's the problem of entropy
The body's, the world's
Rushing toward ever increasing chaos
And 1'm afraid there's not enough love medicine
In the whole universe
To make it stop hurting
To make me ever be well.

Reprinted from Past, Present & Future Passions - Poems by Barbara Ruth,
1986, W.A.T.R.

Spider Flower
Peni Hall
13

Amy Edgington

A Medal For Not Drowning
When I was eleven years old I fell in love with a girl I met on a
camping trip. Kris was witty, sarcastic and smart. She took herself
seriously as an artist, and she had the moral values I consideredmost essential in my friends at that time: she abhorred what wecalled "segregation" in 1957. Her German immigrant family was
not as dully all-American as my own, and her Wisconsin accent
sounded exotic to my Southern ears. My instincts told me Kris
would not be open to sexual approach, but that did not stop mefrom wanting with every cell of my body to be as close to her as
possible as often as possible.
This posed some difficulties: we did not go to the same school,
and our parents didn't drive. We lived impossibly far apart when
it came to figuring out the bus routes and schedules to get frommy house to hers. However, she swam on a swim team at theYWCA downtown, and we could both take the bus there. One
problem remained: I was terrified of the water. More than one
adult had given up on teaching me to swim, saying, "She'll neverovercome her phobia." Without my glasses I am legally blind, yet
I was labeled "phobic" for being afraid to move around in a
strange, potentially lethal element.
I spent the first six years of my life without glasses, and I
avoided the kind of play that develops large muscle coordination; why should I slide down the slide when I couldn't see what
was at the bottom? I preferred the sandbox and make-believe.
Unfortunately, the brain and body seem to learn some things bestat a certain age, so I never quite made up for lost time. I developed
a wariness about tackling new physical feats. I learned that the
combination of my body and strange surroundings often caused
others to call me clumsy and accident-prone.
Once I got glasses, I became a confirmed tomboy despite
skinned knees and elbows. I kept my glasses in a holster at night.
I came home from church and cracked my Lash Larue bullwhip
for an hour to rehabilitate myself from wearing not just a dress,
but the added indignities of a purse, a hat and gloves. I played
14

tackle football in the street with the boys, until I was banned forbreaking the quarterback's collarbone. Evidently I was evenprone to other people's accidents.
At the age of nine I had had my first sexual relationship, but
my girlfriend's mother put a traumatic end to our affair. By thetime I met Kris, I was determined to hide all evidence of mysexuality, although that did not get rid of my feelings. I had also
become embarrassed about my body. I knew I not only had "bad"eyes, I had a "bad" back I have Scheuermann's disease. For
reasons unknown my spine slowly twists into a more and more
pronounced S-shaped curve, when viewed from the side andfrom the back It's actually a spiral: I have seen trees shaped likeme that look strong and graceful. Yet this is considered an ugly
defect in humans, and in a female ugliness is the worst sin.
My ordinary adolescent paranoia about my appearance
seemed to be confirmed by others. I had been muttered over bya series of doctors and physical therapists. I had overheard
remarks about "the hunchback" In the first grade the other girls
insisted that I play "witch"; they left me tied to a tree after recess
was over, burning with humiliation. I did not feel ugly, but I
suspected that others found me ugly. I knew that to go swimming
once, you had to get completely naked in a room full of other girls
twice; the rest of the time you had to run around in a terribly
revealing bathing suit. But I was in love with a swimmer, so inthree months I was on that swim team.
This was at least semi-amazing: the newspaper headlines
should have read: "Half- Blind Girl Half-Conquers Half-Handicap." I swam alright, but I swam very poorly compared to mostof the girls, who had been competing since they were five years
old. Swimming did offer some pleasant surprises: from thestarting block I could only guess where the other end of the pool
was, but I found that the water acted as a lens and I could see thelane marker on the bottom when I swam. I didn't get lost or
accidentally bump into somebody. Best of all, the water cut off myawareness of other people, and my awful self-consciousness
evaporated.
Before summer vacation, we had our annual swim teamparty. During the day, an awards ceremony honored the outstanding swimmers for the most points accumulated in meets,

15

pool records in each event, and so on. Needless to say, I was theslowest of any age in any event. I had never reached the finals ina race. This did not bother me much: I was on the swim team with
Kris, wasn't I? I was as happy as a shark with a new set of teeth.
I was thrilled to watch Kris and my other friends receive theirtrophies and medals. But after half an hour I got hungry andbored like a typical teenager; I was ready to sneak off to the snackbar. Then to my astonishment, I heard my name called. For amoment I panicked: were they going to give me a joke trophy forbeing the worst member of the team? The coach announced I was
receiving a special award - a tiny gold charm in the shape of a
medal - because I had improved my times in all events morethan anyone else. In swimming, cutting your time by half asecond is significant, and I had improved by minutes.
I cannot remember ever having such ambivalent feelings .
Kris's eyes shone with excitement. My friends were cheering andclapping. How could I not be pleased? Yet how could I be
pleased? I knew in my guts what no one had ever told me: athletes
get medals for winning; handicapped people get special awards
for trying hard. Until then, I had felt like an athlete.
In subjective terms my accomplishment in swimming meantthat I had worked like a dog, which I expected to do to learn amajor new skill. At practice I often put on a sweat suit and hightopped basketball shoes and swam a mile, after I had swum all myraces and a mile of regular laps. The best swimmers did this too,and no one made a fuss about it. I often went to bed in pain, but
I had been in pain before without being in love. Love beatsphysical therapy any day.
In objective terms my record-shattering improvement meantthat I had advanced from what could technically be called "notdrowning" to what could technically be called "racing." I had
never doubted that I could do this, but as I stood before myfriends that day, I realized for the first time that none of them had
thought I could. I understand now that my teammates andcoaches were also genuinely awed by the amount of work I had
done <they didn't know about the pain). They couldn't imagine
working that hard themselves without the reinforcement of
winning. I ask you: whose sense of inadequacy was being soothedby that fake medal?
16Eventually I bought a bracelet for my charm, but I rarely wore
it. I withdrew somewhat from Kris, when she told me she wasafraid people would think we were queers. I swam competitively
for eight more years and became strong and graceful in the water.
However, lowe my real medals and ribbons partly to the fact thatcompetition grew less intense: more and more women quit
athletics rather than risk being called "dykes."
As I grew up, I never knew when someone might pity my"deformity" or spurn me for my "unladylike" strength. I learned
that in the straight world I would be expected to hide behind adisfiguring facade of femininity, and that among Lesbians I
would sometimes find women whose prejudices were more
limiting than blindness. Somehow I managed to keep myself
afloat in spite of this. Perhaps a medal for not drowning isappropriate after all.

Dykes, Disability & Stuff'cause we always have stuff to share
BOSTON, MA 02114

P.O. BOX 6194

DD&S is a great place to celebrate our lives! We can look toward eachother for the radical solutions we need and for the unity to makechange happen. Our focus is on the "stuff' of disability in the lives of
lesbians. Subscriptions are $8.00-20 individual, (U.S. dollars, please!)
Contributions of art and writing are welcome.

17

zana

going shopping.

1 am in the co-op, shopping in my wheelchair. this is a big event.
usually other wimin shop for me - it's easier for both me andthem. but i love to shop, love to get out, do something outside of
my four walls. so my lover and i drive 65 miles to the nearest coop, where she leaves me while she does other errands.
i tell her not to rush back. i know i can occupy myself for agood hour and a half, checking out all the wonderful food.
people smile and say hello to me. very different from when
i'm able to walk, and am thus just another dull nonentity. i don't
know how to feel about this. it seems similar to the ways adults
often treat children, looking down on those of us below their eyelevel. it makes me feel incompetent, not fully a person. yet it ishard to dislike friendliness. a nice dykey-Iooking produce clerk
says hello, tells me to ask if i need help reaching stuff or anything.
when i shop on foot, i'm so stressed out. since i don't limp
much or use a cane, no one knows that i 'm desperate to pay formy things and get to where i can sit. using my wheelchair isdefinitely pleasanter. nothing to have to try and explain. no rush.
i can relax and enjoy myself.
the organic produce is always so good here. delightedly i stuff
bags with fresh spinach, carrots, potatoes. it's a little hard to maneuver my wheelchair and the shopping cart and get to my cardboard box inside the cart to pull out a bag, mark the price-perpound on it, put it back in the box filled with veggies. but i'm
managing. i block other people's way sometimes and it makes me
feel bad - i'm a "problem" again.
there's some fresh gingerroot up out of my reach. i lookaround for the clerk who spoke to me, but she's not around.
although i know it' s silly, i'm too shy to ask the other womon, who
did not speak or smile at me. it is within my capability to stand up
and reach it myself, but this doesn't even occur to me until muchlater. when i'm in the chair, rolling is how i get around and i forgetthat anything else is possible.
18

i have to go to the bathroom. again i look for the friendly clerk
in vain. i wonder if this is one of those places where the toilet isfor employees only. i bet they'd let me use it anyway. one of theprivileges of being in a chair. they don't know what strange
malady you have that might just cause you to pee on their floor.
i negotiate a corner - the aisles are wide enough, praise thegoddess - past a couple of small kids staring at me. i ignore them,feeling this is as good a way as any to Ifact normal," as if my using
a chair were the unexceptional thing it should be.
in the next aisle are lovely wooden utensils. i want very muchto look at a wooden bowl on a high shelf. more than peeing or
gingerroot, i want that bowl. i ask another customer, who hands
it down. she is obviously pleased to do it and i'm glad i asked.
quite a few people are in the store. i'm looking at pasta andmeasuring out arrowroot like anyone else, and that makes me feelgood. i'm proud to visibly be a disabled person leading a regular
life, an example of why stores need to be wheelchair accessible. i
also like being living proof that all disabled people are not either
old, or male war vets.
in the store's only tight corner, i'm sort of stuck. a man pushes
my chair from behind. he could have asked, "need a push?" thishappens a lot, and it's nearly always men who assume i need their
help and that it's okay to touch me without asking. still, i did need
help. confusing. i mutter thanks.
i pass the two kids again for about the fifth time. they are
obviously fascinated. i continue to pretend i don't notice themstaring, but i say to the younger one, who keeps standing in mypath, "excuse me, please." i'm trying to be the rational adult, but
it feels like these kids are in the power position and i am intimidated . i remember when i was a kid, how keenly i felt thenormality of other kids and their thoughtless cruelties about mybody's differences. i also remember deliberately setting a large
bowl in the path of my mother's blind friend when i was little. it's
been hard to forgive myself for that.
i'm scooping granola. the bins are high, above my head, andit's very tiring to fill my bags without spilling oats and sunflower
seeds all over. i realize how near exhaustion i am. my nose is ice
cold - the store isn't warm enough for me - and yet under mylayers of winter clothing i'm sweating heavily from the exertion19

of wheeling around and reaching for things. shopping is beginning to feel more like an ordeal than fun.
and in the next aisle i hear the younger kid ask the older,"what happened to her?" mercifully, he is not asking his mother,
who would probably hush him up, reinforcing my fear that i am
untouchable, unmentionable. his sister says, logically, "howshould i know?""what happened?" i've had adults stare at me and ask thatquestion. is there any way that my situation could be viewed asjust what is, rather than something wrong, some horrific tragedy
that spoils the rightness of the world? some days, of course, it
seems like a tragedy to me, but there are many more days wheni go about my business in the ways that i am able to. mostly, i'm
glad the little boy didn't ask me the question, because i don't
know an answer for it yet, an answer that would come from adifferent place than the question.
finally, i'mfinished. i'm so tired -and, i realize, tense-that
i don't know if i can enjoy the dinner out that my lover and i haveplanned on.
but here, at the checkout counter, all is relaxing. how different
from times i came without the chair and stood here filled with
anxiety at every extra second it took. now i sit back comfortably
while the cashier takes care of everything. even the stuff i forgot
to mark prices on. she asks me ifineed help getting it all to my car.
but my lover hadn't returned yet, so the cashier puts the groceries
to one side and i wait.
i think of how things were when i didn't have a partner. whata monumental effort it would have been to shop like this. i would
have needed a friend to load the chair into my car, and then at thestore i would have needed to wait until i spotted some decentlooking stranger i could ask to unload it. then i'd have to ask thestore personnel to put my chair and groceries in the car, and drive
home myself - this fatigued. then find a friend to unload everything! and if no friend was available, i'd be stuck at home, my"legs" and my groceries imprisoned in the car till i could get help.
no wonder that before this lover, i let other wimin shop for me
when they would, or i did it myself on foot - quickly, painfully,
minimally.
having a lover willing to help out has been a great blessing in20

my life. but i am still angry, very angry, that so little in our society
is planned to accommodate physically challenged people so that
we wouldn't always need to wait for help. wouldn't have to havea lover, or money, or a circle of terrifically able-bodied friends
with great attitudes, in order to just live in the world. i don't reallylike relying on another person for so much, and i have fears about
the eventual effects on our relationship.
she arrives; she looks lovely, and i feel suddenly happy again,
less tired. she carries the heavy boxes to the car, uphill. rather thanher having to push me up the rather steep hill, i decide i'll walk,and she can push the empty chair. it's not a long distance for me,
and i don't have much trouble with inclines. standing still, or
walking slow, is much harder on my knees. but i dread steppingout (literally) of my role, getting out of the chair under so manyeyes, and walking. i feel like an impostor. like the man my motherused to buy rag rugs from because he had a hole in his stomach,and then she would speculate whether he really had a hole in his
stomach or just used people's pity to sell rugs. i walk out the door
quickly without looking back, trying to limp more than usual.
the restaurant is something i can handle without the chair. wewalk in and sit down. no one knows anything is "wrong" withme. i feel like i have become a completely different person.
i get up to go pee (finally!) and even though my knee hurts
and i have to rush, it seems easier than the whole big deal it would
have been in the co-op, with the chair, being so obvious and thenhaving to park the chair outside and walk into the bathroom
anyway because almost invariably toilets are not really very
accessible. in the bathroom here, i realize how tense and hurried
i am. i stay on the toilet for a minute and let myself breathe deeply.
my lover and i sit close together and smile at each other a lot.
now, here, i stand out because i'm a lesbian - no one even knows
i'm disabled. it feels much easier. not that it's always easy being
a lesbian in public. but here, as long as we pay our money, as longas we don't roll around on the floor with each other, everyone will
be polite and mind their own business. and it helps that we're
both lesbians - i'm too involved in being with her to notice orcare what others think. i've also felt this way on the rare occasions
when i went places with other disabled wimin.
we set out on the long drive home. i'm full of good food and21

fulfilled in general, and i'm very tired. physically tired, of course;
but also exhausted from the emotional work i've had to do. i leanback against the seat, remembering the kids' stares and my
struggle not to feel freakish. i think of the man's hands on mywheelchair. if only i hadn't been preoccupied with shopping, if
only i'd thought faster and said "thanks, but please ask before
you touch someone's chair." and then, in the restaurant, curtailing all those feelings and passing as able-bodied - that tookenergy, too.
i'm tired, yet i want to talk it all out. as my lover maneuvers
the car onto the highway, into the dark country night, hesitantly
i begin.

Valerie Brown
Jane Philomen Cleland22Susan Hawthorne

The Adventures Of An Epileptic
You never know what strange adventures are going to befall you when
you're an epileptic. You meet people in the strangest places and thestrangest ways.
Eyes were looking at her. Eyes from above. They were brownand blue and brown again ...and there were too many to look at allof them. There were shoulders too. Some stooping, some straight.
But the eyes were still staring. She did not know whose eyes they
were. Among them there was no face she recognised. Not one.
Why above her? Why would all these people look at her? A
woman ...an old woman ...an old woman in black. Close ...very
close to her. Her eyes (she is one of the brown eyes) were justabove her, and very close. She was holding her hand and stroking
it, she was saying something, something in another language.
Then some of the eyes moved. What a strange room. Where do all
the coloured boxes come from? None of it made sense. Anna's
mind grappled for something, but she didn't know what. Noneof it made any sense. She felt wet. She was lying in a pool of water.
But why? Lying in water? Wetness? Some of the eyes talked
above her. There were children, there were grown men andwomen, and there was the old woman in black with brown eyes
stroking her hand. But who were they? And who was she? And
where was she? She turned her head to the side and rolled it into
cold wetness. Her head returned to its original position. The backof her head was flat against the concrete floor. She turned theother way and saw a row of spaghetti packets, toilet rolls and, justdown a bit, tins of cat food. She turned back. Most of the eyes werestill there, milling around above her. The fog was still in her mind.
It did not know who she was, or who these people were and why
she was lying on a concrete floor in a pool of water. The oldwoman pulled at her, urging her to sit up. She did and saw theopen door to the street with the coloured plastic strips hanging
down, blowing in the wind. Several children were tangled in the23green, orange, yellow, blue and red strips. Beyond the door it was
dark. She turned around and saw the counter of the milk barthe part where ice-creams are scooped on to cones and milkshake makers stand unused. The old woman in black was smilingat her. Her whole face was wrinkled like a late summer peach. She
remembered having glimpsed her through the door behind thecounter, but Anna had never spoken with her. The old woman
was pointing now towards the door and the eyes of the others
followed her hand. The first familiar face - one that she knew she
knew though she had no name for it yet - came bustling throughthe door. She, the face, came over and put a warm arm around hershoulders and moved her towards the door. She wanted to turnand thank the old woman for holding her hand, for caring, but she
could not. She felt the eyes penetrating her back as she left.
"How long was I gone? Did I go to buy milk? We didn't get
any before we left.""No you went to ring Alva.""Oh god, did I finish the conversation? She must think I'm sorude, cutting out on her like that. Oh, I'm so embarrassed. How
can I go and buy milk again from them. They threw water overme. I'm all wet. Why did they do that?Oh, what amI going to do?
Can you go and ring Alva for me, please. Tell her we were cut off,and I didn't have any more money.""Why not let me tell her what happened?""I'd feel embarrassed. I don't know. Maybe she knows anyway. I don't want to talk about it with her. If you tell her, tell herthat too. Okay? Everyone will be staring at me when I go down
the street now. They all saw me. It was like a special attraction.""They won't stare. They'll forget.""What's that siren?""I don't know, let me look - there's an ambulance there.""They won't forget. Are there still lots of people there?""A few. Look, I'll go and explain things, then I'll ring Alva.
Will you be okay?""Yeah, sure. I'll be all right here."
How am I going to face them again? Oh, so public. Why did
it have to happen there? Why not here? Oh shit. I'll have to go andbuy things from that other place around the corner. All that24

water. I suppose they got frightened - wanted to bring me
round. The grandmother was nice, but all those others - juststanding there and staring.
Helen came back in. "It's all right," she said. "I talked to theambulance men - assured them I knew w ha tto do, that you were
just tired but that you'd be all right.""Did you ring Alva?""Yes. She said she thought you'd been cut off.""Well, I was sort of - by myself. So you didn't tell her?""Yes, of course.""Oh ... What'd she say?""Nothing much, just.said it made at least as much sense as
Telecom cutting her off ... or the secret service."
She slept heavily. She did not dream. It was like the sleep of
the dead. When Anna woke up and remembered the night before,
she felt humiliated. She could not think what she might say when
she has to go there again. And she knew she would have to - if
not today, then tomorrow - whenever she goes the problem willbe the same. Should she say thanks?
She went in. For the first time the grandmother was standing
behind the counter. She smiled at Anna, showing the gold in her
teeth. Anna braced herself to speak. The grandmother called
through the door, "Despina, ela." Despina came out.
"Hello. How are you today? Better?""Yes, thanks, I'm okay now. And ... and ... thanks.""That's all right. We were a bit worried about you. Has it
happened before?""Yes, it has." But she did not add that it had never happened
in a place like that before - never so publicly.
"But you're all right now. That's good.""Can you tell your mother thanks for holding my hand .
And ...um...can I have a bottle of milk please?"
Anna was walking back from the Pizza shop, past the low risecommission flats that overlooked her backyard. She was trying to
replay what she remembered. There was not much. Not much to
go on. A series of images. The eyes encircling her and the25confusion of that first conscious moment. The old woman's handon her hand, the sense that someone - whoever she was - did
not wish to harm her. And then the image of being dragged home,corpse-like, along the street. And yet she knew she walked.
She looked up from her reverie. Two little boys were standing
looking at her.
"That was funny what you did the other night falling over inthe shop," said one of them. The one she recognised.
"Yes," she said, "yes, I suppose it was."She tried to say goodbye brightly, but it fell weakly from herlips, as she turned to go home, to get away from someone else's
perception of her.
Anna is not unusual. She just has unusual friends. Unusual to somepeople, that is. They seem very ordinary to me.

"Listen to this: 'Pornography is the fantasy, rape is the practice.'"''Well that about sums it up, doesn't it?"
"Yeah, but how can we stop it?"
"I don't know, but I do know that we've got to help some of
the women they're practising on."Anna was one of six women sitting in an upstairs room of a
Collingwood shopfront they used as their base for a Rape Crisis
Centre.
"You know that woman who rang yesterday," said Anna,"The seventeen-year-old from the country who came in here a
few months back, well, her case is coming up for committal next
week. I want to go along to the court. Does anyone want to comewith me? I don't really want to go by myself.""What happened to her?"''It's almost a textbook case - the sort they like - she was
raped in one of those lanes off Little Bourke Street in the middleof the day by a bloke with a record. He was out on bail at the time.
"What day is it on?" asked Jane.
Anna, who was sitting on a mattress on the floor, threw up herarms and gazed blankly towards the middle of the room.
Jane tossed a box of matches at Anna. "Hey, dreamy, when's
it on?"
26

Anna fell sideways, knocking her knuckles against the brickwall as she went.
Jane leapt to her side. "Oh, god, what've I done?""Looks to me like she's having a fit," said Sarah calmly. "Iknew a girl at school who had them.""What do we do?"
"I don't know."''Why don't we call Lisa?" offered Wendy, "She'll know what
to do."
Jane had moved over to the wall and was cradling Anna's
head in her lap . "I thought I'd knocked her out," she said to no one
in particular.
"No it missed actually and it whizzed past her ear," said Julie.
"I noticed because I thought what a good shot. Anyway I think
she was already out to it by then. Look at her hand."Julie lifted Anna's hand and pointed to the grazed knuckles.
"At least she didn't have far to fall.""Yeah, she'd have come down with a real thump, I reckon, if
she'd been standing up."
The doorbell rang. Wendy went to open it for Lisa.
Anna opened her eyes and couldn't work out where she was.
She looked at each woman without recognising any of them.
Lisa walked in with her little black bag and looked at her.
"How do you feel?""Oh, all right," mumbled Anna, "Considering. A bit tired
though.""Has it happened before?""Yes, a few times.""How long did it last?""Ten minutes.""No, it was more like two minutes."''I'd reckon about five minutes.""You lot wouldn't be much help in a court of law."Some people just don't get it. Some people think you've knocked yourhead and fallen unconscious. Well, I don't suppose you can blame them
- it's not always the first explanation that comes to mind.
Anna walked her bicycle out the front door to go to theconference. She raised her leg over the bar of the bicycle and the27whole thing collapsed. She lay in the centre of the road, the bicycle
quivering above her.
By the time the neighbours reached her, she was still, and so
was the bicycle - except for the mad spinning of the back wheel.
They had worried looks on their faces as they carried her throughthe front door and settled her in a chair.
Mrs. Bernadino went to make coffee, while her husband sat
and kept an eye on his strange young neighbour.
"Do you think she'll be all right ?" he shouted. "That was aheavy fall she took - didn't seem to be able to stop herself. I hope
she hasn't got concussion. I don't fancy spending the day at Out
Patients."
Mrs. Bernardino came in and stood while she waited for thewater to boil. "I think she'll be all right," she said. "They're nomarks or grazes on her head, just that nasty graze on her elbow.
And her eyes are a bit glassy. Are you all right, dear?" she asked .
Anna nodded.
"Good. You watch her Joe, while I get the kettle.""Now dear here drink this, the coffee should make you feel a
bit better. That was a nasty fall you took."
Anna nodded again. frowning. She drank slowly. Where'dthis coffee come from? How'd I get here? What fall?
'What fall?" Anna asked.
"You fell off your bike. Don't you remember?""No."
I don't know these people. I wonder where I am. Who theyare. They seem to think I know them. But I don't. She looked at thecup of coffee. My god, how long have I been here? What have I
said? The coffee's half gone. What happened? I don't remember
getting on my bike, let alone falling off it. Shit. Well, I suppose
they just saw me fall and assumed I'd knocked myself out.
"Did your foot miss the peddle?" asked Mrs. Bernardino.
"I suppose so, I'm not sure." I've got to go. I've got to get outof here.
"Are you a student?""Yes.""Probably too many late nights - you should go to bed early
instead of studying so late.""Mmm," answered Anna, trying to be polite, finishing her
28

coffee, standing to go. "Well, I'd better go, I'm already late." Latefor what, she wondered. "Thank you for the coffee. It was nice. I
feel a bit better now."
She headed out the front door and was surpised to see herhouse next door. She hadn't realised they were her neighbours.
She wheeled her bicycle to her own house and leaned it up against
the fence.
"I just have to get a few things," she added. "Thanks."
Anna went into her house and rummaged through her bag tofind out where she was going. The conference programme wasthere. For a few moments she was confused, not remembering.
Then she remembered the workshop she'd been in the previous
day. All those amazing women - writing books, directing plays.
All so talented . 1'd better go. But I wish my head would stophurting. She put the programme back in her bag and left for thesecond time.

Sometimes you find yourself in places you wouldn't have predicted. You
can finish up being with other strange women.
Anna woke in a strange bed. Her mind was blank. Empty.
"Where am I?""'Don't you know?""No .. .1. . .1 don't." She scoured the walls for something familiar. She did not recognise the room. A woman bent over her, half
naked.
"How? ..! don't understand.""You had a fit. Do you remember anything of last night?""No.""That's a pity, it was such a good night.""Why? What? What happened?" The emptiness pressed herback against the sheet.
"You decided to stay the night. You came to dinner and then
you were too drunk to drive."
Some of it was emerging from the empty blackness inside herhead. An image here and there that she could barely grasp.
We were lying on the floor in front of the fire, both of us drunkfrom too much wine.
"Do you remember what we talked about last week?"
29

"Yes."'Well, it's all changed. We've decided to split up."
"Is that a you, plural, decision?""No, not really."'Why do you think she wants it to finish?""Boredom. I don't really know. I think there are things she
isn't telling me. She says she wants to be celibate. Basically, she's
not interested in me anymore. ""And what about you? What are you going to do?""Oh, there are several possibilities ... and you're one of them"
She reached out and touched my hand lightly. I leaned overand kissed her.
"I don't know about this. Isn't it a bit soon?""She can hardly complain.""But what about our friendship? I think you should go
home."''I'm still too drunk."
We lay there, discussing the pros and cons of sleeping together, for two hours - occasionally touching and kissing. Her
hand brushed against my breast, as if by accident. I pressed mytongue against her neck. We embraced.
"I should ring her. Or she'll worry."'What about tomorrow?""I'll tell her we slept together.""You don't have to tell her.""Yes I do. She'd know anyway."
I was about to stand up.
"Are you sure?""Yes, I'm sure."
I rang.
She removed her clothes. I would have liked time just to lookat her, but she dove into bed. Her skin sagged a little. Nicely. I
crawled in beside her. The feel of nakedness .. .it had been so long,months.
"I don't know if I can remember how ... "I realized that for her it is years. She turned to me.
"When did the possibility of sleeping with me first occur to
you?"
30

"The first time I came here for lunch. I can even remember
what we had - parsnip snoup, I mean soup, and prune tart. I
don't remember the main course. What about you?""Oh, a while ago."
Our hands moved. I could feel my wetness seeping. The
unfamiliarity made us tentative. Tongues pressed against lips,
teeth, tongue, nipples.
The silence was broken by breath drawn heavily throughnose and mouth. From time to time we reached for water tomoisten the alcohol dryness of our mouths. Cool wet kisses.
Her nipples rose to my touch. Her hair and cunt were wet. I
pressed my legs between hers. Clutched at her cheeks. I plunged
my fingers into her. Our bellies connected.
We rested.
"I don't know whether I feel adulterous or incestuous."
I am silent with my own confusion.
"I don't suppose it matters really.""Do you think we'd be here if we hadn't been drunk?""No.""And why didn't we speak of this on Tuesday?""Because it was daytime, and we were sober."
We began again.
The night drew on.
We stopped and started again and again. I can't remember
how many times.
"You sex starved thing."
We began again.
"I'm at my peak. Thirty-six. It seems a pity to miss out at sucha time."My finger ran tightly over her clitoris.
"You are good.""I'm glad you think so."She was sitting, in the sun, on the edge of the bed.
"Are you all right?""Yes. I can remember it now. I still feel disoriented though."31

"I didn't know what was happening. I was too slow to put
something in your mouth.""It's not a good idea. It's better just to hold the person andallow the fit to proceed. I always bite my tongue anyway. See."
Anna stretched her tongue out to where the teeth marks werevisible.
"How long did it go on for?""It felt like hours, but it must have been only a couple ofminutes."Thoughts straggled into place. The picture was nearly complete. Memories of pleasure swept through her. Anna reached forher again.

It's not just strange houses you find yourself in. It's strange predicaments.
She raised herself unsteadily from the floor and headed out
the nearest door. A door was open and she walked through it andclimbed into bed. She slept.
When she woke she lay there wallowing in the sun. She
opened her eyes and looked around the unfamiliar room.
How did I get into a room like this? It must have happened
again.
She sat up in bed and looked out over the harbour. Sydney?
Flopping back on the bed she tried to work out how she got
there.
I'll ring home. No. Can't do that. Can't remember the phone
number. There must be a telephone book here.
She dialed 0175.
"Hello. Melbourne. Kin. Collingwood. Thank you."
She dialled again.
"Hello. I think I've had a fit. I'm in Sydney, but I can't
remember why or how long I've been here or where I am in
Sydney. I think I'm in a hotel... All right. You ring me back. Do you
have the number? ..okay."
Anna dozed as she waited for the return call. It seemed to be
taking a long time to get through. She got up to look for somethingin her bag, hoping for a clue. She opened the cupboard door. And
nothing in the drawers. It didn't make sense. No clothes. No bag.
32

No books beside the bed. She got back in the bed and pulled thecovers up - with a dawning suspicion of what might have
happened .
Oh well, I suppose they'll find me. I can't really go anywhere
without anything on.
When the knock came, she called, "Come in."
The housekeeper and a boy walked in. "Hello, I'm epileptic
and I seem to be in the wrong room.""Are you all right?" asked the housekeeper as she handed her
a towel. "This is room 806, you're in 805."
They walked down the corridor to 805.
"How did you know where I was?""Your friend rang and when she didn't get an answer she
thought you might have had another fit. So she rang the desk."
A few minutes later the phone rang again.
"I must have walked along the corridor naked."

You get used to the unfamiliar places and after a while you learn to devise
ways of working out where you are. It takes a lot of stamina not to panic
sometimes.

Spike and Dome Instant
Max Hammond Dashu
Orig. published in Close To The Truth, KIDS Project Press Publications, 1989.

33

Diane Hugs

Who Needs a Perfect Body?
She approached me timidly
like the first time woman touches woman
this was new for her
making love to a disabled woman
so many questions
touches soon gave way to answers
although my body has lost a lot of function
there is still a sexual fire ablaze
no wrapping of legs around her
within my warmth she wraps herself
touches my body can not feelthe love becomes another kind of energy
rushing up my spine, thru my headfilling me to explosion with warmth
the mutual exploration of sexuality
flooding each other with the energy of lovefinding no limits to my loveflowing out of heart and handflowing up through her body
who needs a perfect bodyOrig. published in Close To The Truth, KIDS Project Press Publications, 1989.

34

JoAnne Rome

Untitled

I was born without a left hand or arm below the elbow. When I
was two years old, I was taken to Shriners Hospital in New York.
I remember a room with little chairs, my size chairs, and tables. A
big, painted wooden shoe. Flat, like an oversized child's puzzle
with raised metal grommets and laces on which I was to practicetying shoe laces with my new artificial arm. I remember sun
coming in through a window, feeling small, and silence. I don't
believe it was silent there, but when I recall it, that is the feeling.
I don't remember the first time they stuck my arm in the warm,
gooey plaster and wrapped it with ace bandages, smearing
plaster and wrapping, molding the cast to my arm as the plasterwent from warm to clammy cold. I don't remember the first
fitting for straps and the endless measurements and opening andclosing the new rubber hook.
Every 4-6 months, until I was 16 or so, I went to a Shriners formeasurements, adjustments and plaster casts. As fast as kids outgrow shoes, they outgrow prostheses. I would get a day off school
and mom would take me to Shriners. I hated going. I hated feelingdifferent, hated the other kids, hated being lumped together withthem. We were "crippled." We went to Shriners Hospital for
Crippled Children. There we'd be in the halls lined with chairs,
our parents, mostly moms, looking pained and ashamed, trying
not to stare at each others' children, but not successfully concealing their morbid curiosity. I recall my mom and another woman
looking at a child with no arms, just some fingers at his shoulders,and shaking their heads, saying "it really makes you count yourblessings, doesn't it?" It could be worse. It could be that bad. I
remember a child on a table in a body cast, screaming in terror
over the noise of the power saw as it cut away the cast.
We sat in a hallway lined with chairs and waited for interns
to take our measurements. In a room at the front of the hall sat thedoctor-gods. Flanking them were rows of chairs where the student nurses, physical and occupational therapists, etc., sat. One
by one our names were called and we would walk, limp or roll

35

down the hall to them. Everyone watched. When we got there, thedoctor-gods would examine us, turn us this way and that, andthen take questions from the assembled interns/ students. They
would make a few comments into the dictaphone. Then we weredismissed; we could go get our clothes and leave, as the next one
was called.
It's truly hard to say ... what it was like. Being discussed andexamined by the doctor-gods and students was humiliating.
Taking off my shirt to show them my arm, the straps across myback and under my arm ... being stared at by all the parents, thepain and the shame of the parents, of us kids, just hung in the air.
How defeated I felt as we stood at the nurses' station making thenext appointment. I remember the pavement in that parking lot,remember breaking for the car. My mother sighing, exhausted. I
repeated this ritualfor so many years. Untill was a teenager, until
the humiliation of taking off my shirt and exposing my young
breasts, my bra, was too acute. Until they finally acknowledgedthat I was too old for children's clinic. And so it ended.
Growing up, my family called my artificial arm my "helper."That was the name we used to refer to it. Like "Barbie." "Mom,seen my Barbie?" "Mom, seen my helper?" I didn't really know
the word "prosthesis," which is kind of a mouthful. In front ofcompany we said "artificial arm." I put it on when I got dressedin the morning and took it off when I undressed at night. It wasnever a consideration that I might go without it. On the hottest
summer days, when the sweat stuck the straps to my back, andthe chafing from the strap under my arm made me crawl the wallswith rage and discomfort, it was never a possibility. Certainly
never in public. Unless we were going swimming. Swimming
was one activity that required removing my arm in public. The
process was agonizing. Where to take it off? On the beach?
Nowhere to hide, there. I preferred the public bathrooms, in astall where I could stuff it in mybeach bag and put things on topof it, drape a towel over my arm and pile everything up in myarms. No one would know until I got to our blanket on the sandand had to unburden myself ....
The word "deformed" pounded in my brain, though in truth
I thought my hook far uglier than my arm. I hated the shiny metal
hook that in later years replaced the child's rubber one. Hated
36

how it stood out, hated it and hid behind it, for it had become myarmor and I felt vulnerable without it. This thing that was supposed to make me more acceptable, help me function just likeeveryone else. My "helper." I hid in that device and hated it, but
I was unable to conceive of not wearing it. I felt it would be far
worse for people to look in horror at my real arm as they did at thehook.
The compensations were endless, long sleeves in the heat ofsummer to conceal my arm brace, high necklines to hide myshoulder straps, nothing too sheer, nothing too thin - nothingthat would draw attention to me. I stuffed my hook deep into myjacket pockets when I was on the street, hoping to pass, and oncesafely at home the final act of frustration, anger and pain culminated in my ripping "my helper" from my body and flinging it
against the wall.
I used to believe lowed an explanation to whomever demanded one. I felt fearful, intimidated, ashamed, out of control
and outraged, yet "what happened to your arm?" was not aquestion that I could choose to answer or not. I was a freak, anoutsider, an "other," and the world made it very clear that I owed
them an explanation. I was also a little girl who was chased homefrom school with taunts of "Captain Hook!" ringing in my ears,
the object of whispers, stares and laughter. "Don't let her play,
she'll pop the ball with her hook!" The dominance and submission in the abled/ disabled relationship was/is very powerful.
This har-assment is a fact of my life. I've heard "mind if I ask you
a stupid/ personal question?" from sensitive lesbian psychotherapists, suburban housewives, boys in gas stations, salesclerks, doctors, joggers, dykes in bars and so on ad infinitum. I
detest it, it hurts. I feel like an object of curiosity, not a woman
with a head and a heart and feelings that should matter.
My mother sent me a Life magazine article on the movement
to bring myoelectric arms into wider circulation. The heading
reads, "Por children born with missing limbs, myoelectric replacements offer a chance to lead LIVES THAT ARE WHOLE."
Myo's use electrodes to transmit impulses (caused by flexing
muscles in the arm) which open and close an artificial hand. The
myo's do not have the confining figure-8 straps which characterize the hook. The circuitry is encased within the forearm, and it is37made to look as much as possible like a real hand. They cost
between $10-15,000. During the later years of wearing my hook,
I really wanted one, but could no way afford it.
The article is laced with anecdotes and commentary frommyo users, doctors and prosthetists who view the hook as obsolete. The emphasis is on how much like a real arm it is, with "skinfolds," airbrushed veins, etc.; how passing as two-handed makes
life so much more comfortable for the wearer. "In cool weather,when long sleeves are worn, most people don't notice it's not anatural arm." ''Now that I have a myo, I've stopped getting those
double glances. I don't feel like the Elephant Man anymore." The
medical establishment promotes identification with the arm to
the extent that the wearer is supposed to perceive her/his self as
actually having two hands. Prosthetist Thomas Habam believes
that "the sooner babies with defects get myo replacements, thebetter. Under one year is not too soon. You want them two
handed when they are progressing through the natural stages ofdevelopment ... early on, you want them to see 10 fingers." *These disabled kids are asked to participate in a conspiracy
that distorts reality and promotes a profound level of denial andself hate. Why? Who does this really benefit? This line of thinking
enrages me. I grew up with a huge amount of alienation aroundthis part of my body. And I was never asked, as these kids are, toidentify the artificial arm as "me." As it was, on many levels, it
became so tangled with my self image that I could barely separate"it" from "me." It is commonly understood that a child given a
prosthesis "too late" in life (after 4 or so), will have adapted to thepoint of rejecting it. The medical community frowns on this. But
adaptation is a way of life when you are disabled. I have to adapt
to use the arm as well as to go without it. Early introduction of an
artificial arm is not merely to ensure facility with the device. Built
into the concept of prosthetics is the need of a fearful andcowardly world to avoid what is different and thus threatening
to it. So we are compelled to cover up, to hide our "defects" so that
we are less offensive to others.
It is a conflict. Many times, I long to and do try to pass. I don't
always feel up to the challenge of facing the world. It's hard. Hard
to go out in public. To choose where to go, where to avoid, how.. My emphasis
38to stay present. Aware of when I'm getting out of my car or
crossing a street and I'm being watched. Sometimes for a brieftime, people can't see my arm because something is blocking
their view; they're looking at me and I'm thinking, steeling myself and thinking, any minute now they'll notice. If they are thinking I'm pretty or they like what I'm wearing or they're just idly
staring, any moment now it will be smashed. And I cringe inside.
Acknowledging these feelings, let alone figuring out healthy
ways of dealing with them, has been a profound task. I had alegacy of denial passed from culture to parent to child. From
covering my arm up with a blanket when I went out as a baby, toreprimanding me when I once wept that I was "crippled" ("Youare not crippled," my mother corrected. "You are handicapped."),my parents used denial as a tOvl for coping with a reality that they
could not face, that they felt I could not face. And so I grew up
being told - you are no different than anyone else. You have to
do some things differently than others, but you can do anything
anyone else can do. Don't cry, don't be self-pitying, the taunts andstares are the products of ignorant minds. Chin up. From myfather I got: you are a product of me, you are intellectually
superior. You may have half the fingers but you have ten times
the intellect. Prove it. Use it. So I learned to deny and deflectreality when it pressed in and to intellectualize feelings.
Years later, with a dyke therapist, I did finally tell the truth. It
was not fun. It made me crabby and angry and frustrated andvicious, and it hurt terribly. I hated the world, the lesbian community, everyone. The relief in saying was not sweet; in fact, it
scarcely felt like relief at all. I said the same things over and overuntil I hated myself for droning on, hated her for not turning it ina different direction, for not fixing things, hated the lump in mygut for never yielding, the facts for never altering, the events ofthe pas t for never undoing themselves. I am exactly w ha t I'd beentaught to deny. I will never wake from this dream. It is not a
dream. There will never be the" even 5 minutes with two hands,
please, god" that I had wished for. Period.
Yet there has been much recovery. Sometimes I catch myself
doing something -like being without my fake arm in a straightwork environment - and it pulls the breath out of me for a
moment, I feel so proud. Other times it's back to hell again. I went39

to the mall in a short sleeved shirt a few weeks ago, and it was ahuge mistake. I burned with shame and self-loathing all the way
through and out the door. But I still feel proud of myself andspecial. I have felt very oppressed by the use of "special" - I havebeen fed "special" in a pitying, pious, god-Ioves-you-that's-whyhe-singled-you-out way that has been painful and destructive tome. "Special" has oozed condescension and superiority, as though
the bearer is also congratulating her/ himself on having personally escaped such a fate. But I am special. There aren't lots of me
everywhere. My first woman lover was the first person who eversuggested I go without the prosthesis. She liked my arm, thought
it was cute. "She has a dimple," she said. And I thought, "Yeah,
she does, I do." My arm is soft. When I was a little girl I would suckon it, alternating with my thumb. So would my little sister. We'dlay down for our nap and she'd reach over and grab my arm ...asa child, that was the most love and acceptance 1'd felt from anyone. So yes, I feel special. This life that I have made feels special.
I feel gratitude now with the grief. For my spirit that would
not accept the culture's definition of me as a script for my life, forknowing finally that their beliefs are not my beliefs, their vision
is not my vision. For the self-love that soothed and sustained mewhen I couldn't even admit its existence. For my unwillingness toaccept powerlessness in the face of abuse or the damage as irreparable. For the courage to find my way to a process of healing.
Gratitude for the women in my life who have reached out withlove, support and open hearts.
My friend 5.]. grabs my arm in one hand and my hand inanother and we stand facing each other that way, swinging ourarms back and forth and chatting. It's great. It feels like - "I likeyou, I accept you, you are wonderful just the way you came to thisplanet." There is a quote from the great book No More Stares thathas special relevance for me. "I don't want you, they don't wantyou, nobody's gonna want you. At a certain age in my life, it
dawned on me - well, I want me. If on one else on earth wants
me, I do.'"
I do want me, finally .
• Babyie, in No More Stares, published by The Disability Rights Education andDefense Fund, Inc., Berkeley, CA, 1982, p. 102.

40

Max Hammond Dashu
41

Barbara N. DinnersteinHey, Who Turned Down The Sound?

I was about eleven years old. I was in the fifth grade and mywhole class went in to the nurse's office for our annual physicals.
We each looked at the eye chart and had our hearts listened to andour hearing tested. Well, we were all lined up alphabetically and
I was fourth. So I got to watch all the kids before me and I saw
them all put on the funny headphones that squished their heads
tight and then the nurse would tell them to listen and when they
hear the beep, raise their finger.
The three in front of me did just that and the nurse said good
and then they went to the next part of the physical. My turn cameand I thought it would be as easy as the other kids. I complained
about the headphones and the nurse ignored me, everyone knew
I was a chronic complainer. When I got the damn things on I
waited for the beeps, I really waited . I thought the nurse waspunishing me and not making the beeps so that I'd have to wear
the headphones longer. I saw her moving the dials on that little"Beltone" machine.
A few minutes went by and I still didn't hear anything. I
began to get a little scared. The nurse looked up from her machine
and told me I had better stop fooling around and pay attention.
Then she took the headphones off me and listened to themherself. Meanwhile all my classmates began to stare at me, like I
was crazy or something. The nurse told me to go back to theclassroom and to wait for her to come and get me. I walked backto my class all by myself, thinking I had broken the machine
because I was so fat. I was trying to think how I could have broken
the machine.
Back in the classroom I put my head down on my desk andcried. I wanted to run away but didn't know where to go. Abouta half an hour later my classmates came back from the nurse with
our teacher and they all laughed at me and said, "Dinnerfat broke
the machine, Dinnerfat broke the machine."
My teacher told me to go back down to the nurse's office. The
nurse had me put the squishy headphones on and listen, but
42before she put them on me she said I had better stop playing
around. So we tried again and this time I still didn't hear the beeps
and I got really scared. We did this for what seemed to be theentire afternoon. Finally she told me to take this note home to mymother.
When I got home, I found my mother in her usual place in bed.
She was just laying there with her box of Shop Rite chocolate chipcookies and Divorce Court on tv. I gave her the note. She read it
and started to cry, and then just told me to go downstairs and takecare of my brother.
The next day my mother came to school with me. My motherwas one of the major embarrassments of my life; she never bathedor washed her clothes, so she would put on tons of perfume anda smelly dress and bright red lipstick. Anyway, we got to school
and my mother and I walked down to the nurse's office. The
nurse put those squishy headphones on me and we tried the test
again. This time I still didn't hear the beeps. The nurse told mymother that she thought I was losing my mind or my hearing andthat she should take me to a doctor to find out what was going on.
My mother started to cry and said, "It's the Dinnerstein Curse. It's
your grandmother Rosie Dinnerstein's fault."
I went to see Dr. Glassgold who took care of my Uncle Morris.
My Uncle Morris lost all his hearing when he was something like
23. His nurse took me into this tiny room with all these ceiling tiles
on the walls. The room looked like it was one of those big
refrigerators that they have in the grocery store. I was afraid to go
inside. In Hebrew School we had just started to talk about the
Holocaust and how Jews were forced into big rooms to takeshowers but instead were killed. I didn't know this doctor and I
certainly didn't trust my mother to protect me, so I was afraid I
was going to die in this strange refrigerator.
Once in this room, the nurse put on those same squishy headphones and told me to look through the mirror at her and when
I heard the beeps I was to raise my hand. The lady left the roomand shut the door behind her with a big thud. I felt the air suckedout with her. But she just sat down at this huge machine on theother side of the glass and smiled at me. Then I started to hearthese strange sounds like beeps and boops. I kept raising myhand, right for noise in my right ear, left for left.
43

I thought it was kind of neat and really began to have fun
myself. I was getting all this attention from the lady, from mymother, from the doctor. The best part was that my brothers andsister weren't there and my mom was out of bed.
The test was over and they let me out of the refrigerator andmy mother was waiting for me. When the doctor called us in, I got
to sit in this chair that looked like it belonged on a space ship. He
looked in my ears and throat and took a tuning fork and tappedon his knee and put it near my ear and asked me if I heard thenoise it made. I nodded my head, yes.
He told my mother that I had a "progressive bineural sensor
hearing loss." I had no idea what these five big words meant. But
I thought it was really neat that there was something that wasgoing to make me different from the other kids, other than being
fa t and dirty.
The doctor told my mother that there was nothing he could do
for me; hearing aids wouldn't help me yet. The only thing hecould suggest is that I sit in the front of the room and get
preferential seating. I didn't know what that meant either, but if
it was like prefer, like I prefer chocolate cake over liver, I was all
for it.
Well, that was the end of that, I thought. No more squishy
headphones, no more stupid beeps, but I did get to change myseat and sit in front of the teacher's desk. I felt like I was going to
finally get noticed. I thought that I was going to be special because
I couldn't hear the beeps. That was great. I mean, who needed tohear a bunch of stupid beeps anyway?

44Teresa Myersfrom My Worst Fears
My doom comes on slowly
slipping softly on stealthy feet
decibel by decibel
it comes ....
Long days of boredom and terror!
I cannot see and couldn't hear
if someone were breaking in this very minute.
Twitching, awaiting a man's cold fingers round my neck.
I've watched it happen to others
who must trust their lives to those with no timeto learn their language.
Eating slow dinners alone in restaurants,
can't eat and "talk" at the same time.
Sitting still and frightened in a crowd ....
Always waiting, isolation, freak, reduced
to polite dependence on untrustworthy others.
Embarrassed hoping, pathetically grateful for the smallest crumb.
IT IS DANGEROUS TO BE ANGRY!
Rejected by the deaf and the blindfor I may become deaf and am already blindembodying the worst fears of both.
They are my worst fears too.

About My Worst Fears
In January of 1987 I finally decided to stop putting off a visit
to the doctor about my hearing. I didn't want to admit I was
having any trouble hearing but got concerned when I started
having trouble judging the direction from which cars werecoming. As a totally blind person, I use my hearing for almost
everything from telling when water boils to finding out if it's
windy or raining. I use it to read talking books when no braille is45

available and to judge traffic when crossing a street. So I wasscared when the doctor said I could use hearing aids and that I
have a bineural (both ears) sensory-neural (nerve damage) hearing loss which would get worse as I get older and could not be
stopped. He said it was a minor loss I was experiencing compared to what he often saw. But he was talking about people
with sight.. ..
When a family member, who speaks softly and fast, requests
that I put on my hearing aids I feel threatened and angry thinking "I don't want to, I don't have to have them all the time yet,why can't you just speak up a little? Why do I have to make all
the adjustments?"... Even without formal training most sighted people experiencing a mild hearing loss will begin to watch faces to supplement what their ears tell them.
It is VERY IMPORTANT to me that all who read this knowthat I am NOT trying to describe accurately the lives of womyn
who are visually and hearing impaired. I know there are womynwith hearing and visual impairments who live full rich lives. I
am only trying to deal with my fear. When I say in this poem
"I've watched it happen to others," I speak of people who wereclients of the rehab. agency for which I used to work. They, likeme, were struggling with hearing and/or visual problems as
new events in their lives. I do not intend in any way to discountthe capabilities of womyn who have hearing and vision loss. I
only describe the first step in facing my own situation, admitting and sharing "My Worst Fears."46

Naja Sorella

Quali ty Of LifeAs a womon severely disabled by chronic illness, quality of life
is a continual struggle.
When I first became ill six years ago, I was convinced 1'd get
better and return to what I thought of as a normal life. All the
doctors assured me of a cure in six months, a year a t the most (theycouldn't conceive of not being able to fix a patient.) As the firsttwo years went by and I slowly came out of "plausible deniability," the reality of my life put me on the edge of despair. The
realization that 1'd never work a paying job again, not go toacupuncture school, dance, theater, or trapeze classes, have little
or no political involvement or social life, plus the inability todepend on being well enough to plan ahead for even a day, madelife look so bleak, it didn't feel worth living.
Since then, the quality of life looks different each year. It keeps
peeling away layer by layer, like an onion. What felt absolutely
impossible to live with three years ago has become everyday.
Five, even three years ago, I thought I'd slit my wrists if I knew for
certain that 1'd never "get better." "Getting better" is too broad aconcept to think about any more. "Get better" meant" cured" andwas the whole onion: round, shiny, smooth, all layers intact, nobruises, cuts or peeled skin. I had to admit to myself that I wasn't
going to "get better" in that sense. I might improve, I hoped I
would, but I'd never have the whole onion again.
What is the quality of life? How do I figure out for myself
when life is no longer worth living? I continually ask as each layerof onion peels off. The third year I suddenly became dramaticallyallergic to everything, making it more and more impossible toleave my home. I became allergic to all but seven foods, andrequired oxygen and a wheelchair when I did venture from myhome. Debilitating exhaustion kept me in bed seven and eightweeks at a time.
This was the year I was forced to accept the fact that my illness
was here to stay. I not only spent the year grieving, but assessing
the quality of life. Up to that time, I'd defined it as the whole47

onion, and assumed I'd get it back. Now, I looked forward to a
week out of bed every seven or eight weeks, occasional relief from
migraines, nausea, chronic all-over body pain and debilitating
weakness. Participating in creative groups when I could, visiting
friends, going to the park, marina, and more rarely, a Lesbian
event with my lover, helped to make life worth living.
My fourth year I rarely had energy to be out of bed. The
majority of that year I spent in cellular exhaustion (lack of enoughenergy to roll over.) The migraines, other assorted splitting
headaches, nausea, aching muscles, arthritic joints, painful scoliosis, allergic reactions, and everything else that made me miserable, continued to become more severe. I spent that year on theedge of suicide. I'd been stripped of the things I could do the year
before, and they'd become my new concept of quality of life. Only
the lack of energy to get out of bed and find something with which
to kill myself saved me.
As each layer is scraped away, the quality of life is defined bysmaller things. The fifth year, I decided I couldn't live throughanother year of cellular exhaustion. It became my bottom line. A
few days out of bed each month became the new criteria. I also
wanted some measure of relief from severe brain dysfunction, theconstant fogginess and the horrible headaches. At least one "dayoff" from these symptoms every couple weeks was necessary to
make life bearable. If I could manage to do art once in awhile,
write a new piece occasionally, and at least talk for part of the datetime with my lover, then life could still be satisfying.
I got a break from cellular exhaustion a week here and there
from April to mid July of the fifth year, then life became the sameas the year before. The improvement from April to July kept mefrom total despair. Only eight months of continual cellular exhaustion, versus the whole year, was a reason to keep living.
From July of the fifth year to now, another year has passed,
more layers have been stripped away. Mostly, I average one hourout of bed a day, which means eating and using the bathroom. It's
been two years since my brain has functioned well enough towrite anything except a few love poems to my lover. Writing thispiece has taken every bit of energy that I've had out of bed, muchtime to complete, overwhelming fatigue, extreme headaches
from all the thinking, and extensive editing from Barbara Ruth.
48

Most of the time, I'm too fogged out to even think. I've given up
identifying as a writer. One more piece of the quality of life dropsaway.
The brain dysfunction is progressively worse, making it
extremely difficult to do anything but lie in bed. In the past year,
I've had a total of maybe three weeks of ability to read, but I don't
remember what I read. Reading had always been a major pleasure in my life. As my brain functioned less and less for reading
and writing, I replaced them with art. Painting didn't hurt mybrain as much, or fatigue it in the same way reading and writing
did. Being able to do art once in awhile added to my finding life
enjoyable. Now it's almost a year since I've been well enough to
do any art work. Another part of my quality of life peels away.
As the years go by, I talk less and less on the phone. It's
incredibly draining and thinking causes little explosions in mybrain. Mostly I don't remember much of what I talk about inconversations. The phone had become my access to friends, sincevery few people come to my home. As I lose the ability to 'communicate by phone, my isolation becomes more complete.
Before becoming ill, I was very active. I had friends, I was
creative, I read. Now, the tv consumes most of my waking hours .
It takes little brain, or physical energy, I can blob out on it and beless aware of how terrible I feel. It's extremely boring and thelowest on my list of things that make life gratifying, but it's what
I'm left with.
Increasingly, my life is bed, bathroom, eat; bed, bathroom,
eat. As I lose more parts of myself, my perception of quality of life
is continuously challenged. Throughout the process of defining
quality of life, I've been up against the cultural values of production. People who work for pay are more valuable than so-called
non-working people. Our culture views chronically ill people as
non-producing; therefore of no value, worthless, a drain on
society. But I don't want to confuse the quality of life with mypersonal worth, or my right to exist, or having my basic needs
taken care of. It's taken me years to separate these.
The work ethic of my family and culture was well ingrained
in me. I felt worthless since I couldn't contribute in a culturally
defined way. At first I couldn't work at a job, then, more importantly, I couldn't contribute by belonging to political or creative49

groups, then my ability to contribute by writing was gone, andnow I can't even care for myself. I still haul myself out of bed todress, go to the toilet, eat, and bathe every two weeks, but rely on
attendants to do everything else for me.
It's taken this search for quality of life to separate my value as
an individual no matter how little I can "do," from what I feelgives quality to my life. Quality of life isn't about what I can "do"or if I can "work" or not, it's about enjoyment of life. It's about
having something in my life that gives me pleasure, enoughpleasure to want to keep living. Now that I don't rely on what I
can "do" to define my value, I've found other things to give life
meaning. I've had to turn the little things that I've enjoyed sincechildhood into my new criteria. Hearing the robins, stellar jays
and their friends as I wake up each day has been one of myreasons for living this past year. All the beautiful swaying trees
outside my windows are another. Having the energy to sit up in
bed and watch the sunset puts enough joy in my life to want tomake it to another day. As I lay in bed month after month, I get
pleasure from looking at beautiful crystals and stones on mydressers. Paintings clutter my walls. Having the beauty of thestones and paintings surround me is part of my new definition.
Shedding these layers, coming to rely on the birds, trees,
sunsets, crystals and watercolors as quality of life is not a great
spiritual revelation for me. My illness isn't about learning theselessons. I'm simply a womon with few choices left. I'm notcourageous and brave, as the able bodied tend to think about theseverely disabled. Nobody volunteers to be disabled, like they do
to climb sheer cliffs or swim the English Channel. I'm not anymore enlightened than anyone else. I just don't have many morelayers to peel away.
What will the quality of life be if I lose my one hour of energy
a day, if I go through another whole year of lying in bed too
exhausted to breathe or roll over? If the pain and exhaustion andsplitting headaches and dozens of other symptoms drown out thejoy of birds and sunsets and watercolors, will that be the bottom
line? I don't know. Perhaps. Perhaps I'll discover, as I've been
forced to these past years, that there's yet another layer to peel
away.

50

Pamela Pratt

Bump
I.

The confines of the nursery were at all times
secure:The yellow walls warm with Renoir's little girls
The solid oak chest my mother would lean her back against atnight, as sheheld me in her arms, her face in my neck
The wind chimes pealing like a girl's uncertain giggle in theperpetual breeze.
With only the crack of light under the door to guide her
my mother wandered my room at bedtime, pretending to trip,
to knock up against furniture by accident, saying bumpinto my neck already full of kisses, bumpbump.
And this is what I learned:
That danger is only what you make of it,
That at the touch of a word
it will disappear.
II.

My mother closed her body to me when I was nine:
Our baths together ended
She donned at least underwear to walk the hall.
This didn't stop her from demanding
I sit open legged on a chair so she could photographthe beginning of my pubic hair.
Shame closes on me still,
my knees touch automaticallyat the memory.
I am more invaded than by any man.
The older I got
the more my mother wore in front of me51

until my only image
became her fully clothed.
When i visit her now
She clutches her breast under her clothes,fingers her waist,she straightens her back, her hem line,
checks her make-up, smooths her hair,
does not believe my look is full of admiration,that she is a woman aging to perfection.
She tugs at my hem lines, too,
does the kellogs' pinch with my waist,
too fat, too thin, double chin.
Does not understand why I don't bring home to her my friends.
III.

I am convalescing in my mother's home.
I have lost a portion of my breast;
I have left disease behind.
There is no question but that I am fine.
We stand in the shower, washing my hair.
She wears underwear; loose, flowing, speckled things she has
painted rooms in,that billow with water, with wind.
I am nude but for the bandages,
knees locked firmly in place.
I will allow her no in.
But her hands lift my hair to the water like a ream of silk:
She un threads strand by solitary strand from the massand offers it to the water. It is not a rinsing but a purification rite,
and all this while, her body shelters my wound from the water.
I cry out in pain, from a place where I would have to say
there has been no pain for at leasta moment now.

52Jackie Winnow

Lesbians Evolving Health Care:
Our Lives Depend on It*
Recently the San Francisco Chronicle ran an article addressing
the plight of the hundred women with AIDS in the Bay Area anddescribing the services that have been started for them, including
housing, child care, a day center, haircutting, a food bank, massage, counseling and meals.
In 1988, approximately forty thousand women were livingwith cancer in the San Francisco I Oakland area, at least four thousand being lesbians, about four thousand women dying. Eight
thousand women were diagnosed this year. The forty thousand
women don't have the services that the hundred women withAIDS have. I want the women with AIDS to have those services.
I don't mean to polarize. But I also want recognition that we havea huge problem here and we need to do something about it.
According to the American Cancer Society, half a million
women in the United States will be diagnosed with cancer in 1989,
and a quarter million will die from the disease. Forty-two thousand women will die from breast cancer in one year, about thesame number of people who have died since the inception of the
AIDS epidemic in 1981. Cancer is the leading cause of death inwomen ages 35 to 54. Cancer has become an acceptable epidemic.
As someone who has metastatic breast cancer, that is unacceptable to me.
While many lesbians continued to keep their attention primarily focused on women and women's concerns, many more
women turned toward AIDS work, as shown by our numbers at
this conference .
• This article is adapted and shortened from the keynote speech at the Lesbian
Caregivers & the AIDS Epidemic Conference in San Francisco in January 1989;
and is an edited version of the same paper published in Out/Look No.5, summer,
1989, entitled "Lesbians Working on AIDS: Assessing the Impact on Health Care
forWomen."53

Why have so many of us become AIDS caregivers? There is aclear, delineated crisis and there is a need to help people in ourcommunity. We take care of our friends who need us. Because
women, even lesbians, were raised to be caregivers, we moved
toward that need. We were raised to despise ourselves andbelittle our needs while holding those of men to be important.
Women were raised to take care of men and to serve them. My
father once told me that.
And even though we are lesbians and have made conscious
choices to disown that heritage, we have nonetheless incorporated many of its basic tenets. As the "other" in the lesbian andgay and women's movements, we were left out a lot, not part ofthe in-crowd. Working in AIDS, coming to the service of menworking in their agenda finally - served to validate our existence. It is also easier to work on something like AIDS, because, by
and large, we won't get AIDS, nor will our lovers or our lesbianneighbors. And AIDS is something the whole society is addressing; we can actually fit in, we can be considered heroic andimportant and decent and be recognized for it. We can even,sometimes, work in a queer environment. We get to work where
our hearts lie. The work structures are set out for us; the funding
is available.
This is not to say that working on AIDS is easy or that we don't
care for and love the people we know with AIDS. It is to say that
we make excruciating choices without even being aware of them.
Lesbians were and still are in the vanguard of the women's
and lesbian and gay liberation movements. Without us, there
would be no rape crisis centers, no women's foundations orbuildings, no awareness of domestic violence, no women's music
festivals or women's radio programming. There would be no
National March on Washington, AIDS quilts, AIDS food bank or
many other AIDS services, especially those for women. Withoutus, the women's movement would not have addressed homophobia and heterosexism and the lesbian/ gay movement would
not have addressed sexism. Indeed, without us, these movements would have remained one-dimensional reform movements. With us, they become dynamic forces for social change.
What has happened to the women's movement and community since the AIDS crisis started? While it still pulses with54

creativity and excitement, many institutions, organizations, services and political agendas have been slowed or disappeared. Not
just because of AIDS, but because of general disinterest. Here in
the Bay Area, there is no more Plexus L A Woman's Place Bookstore, Berkeley Women's Center, San Francisco Women's HealthCenter or Lilith Theater group, to name just a few.
Right-wing groups like Operation Rescue are harassing
women at abortion and birth control clinics and bombing thoseclinics. Why aren't we marching in large numbers to protest?
Violence against women is proliferating at enormous rates; we'remurdered, raped and beaten every few seconds, yet few people
decry violence against women. Why don't we make it clear that
there is a hate campaign targeting women and that it is not new?
Why aren't we screaming that sexism kills?
No one takes care of women or lesbians except women or
lesbians, and we have a hard time taking care of ourselves, offinding ourselves worthy and important enough to pay attention
to. Why doesn't the lesbian and gay community mobilize aroundthe urgent needs of women and lesbians? Why don't we evenconsider our needs urgent?
As a woman with cancer, I have learned about how serious
our needs are, about what we need and what we don't have. As
Lesbian/ Gay Liaison to the San Francisco Human Rights Commission, I found myself waiting for my first biopsy results in May
of 1985 at a Lesbian/ Gay Advisory Committee meeting. Our
meeting focused on AIDS and I remember thinking, screaming
internally really, 'What about me?" Well, I quickly found out
what about me.
I felt invisible in our community. I had a lumpectomy followed by radiation, survived, and was expected to go back towork- to work on AIDS-- and life. There was little recognitionof what a woman with cancer goes through. What I found was acommunity willing to address AIDS, but no more. !found thatthe
things that were offered for people with AIDS did not exist forpeople with life-threatening illnesses; that some of the problems
that existed for people with AIDS existed for all people with lifethreatening illnesses, and yet our community, and society ingeneral, has been one-dimensional in its approach.

55

If you have AIDS in San Francisco, you can go to the AIDSFoundation for food and social services advocacy, get emergency
funding through the AIDS Emergency Fund, and get excellent
meals through Project Open Hand. Your pets are taken care of if
you should land in the hospital or if you're too sick to take care ofthem. There are clinics and alternative centers and organizations
fighting for drugs, research and mental health.
If you have cancer, you wait endlessly for a support group,
which if you are a lesbian, a woman of color, working class, or
believe in alternatives, you don't fit into anyway. No organization shepherds you through the social service maze, no organization brings you luscious meals or sends support people to clean
your house or hold your hand. No organization fights for yourneeds, no one advocates for you.
I'm not saying this just to pick on our community. We live ina society that, by and large, does not take care of its sick. In the caseof AIDS, we have built a model as a community. This model does
not exist outside of AIDS. This model was built by lesbians andgay men to serve people with AIDS, but it does not serve ourentire community.
Cancer, like AIDS, is about living, it's about living with a lifethreatening disease, in whatever stage, whatever condition. Although each of us experiences cancer individually, it is throughcollective support and action that changes take place. As an
activist, I always believed that, and my own cancer experiencestrengthened that belief even more.
Organizing is needed for all diseases. All disease and illness
in this country is political, not just AIDS. For myself, I learned tomake a will, a durable power of attorney, to have someone at
doctor's visits, to tape-record those visits, to build support.
And I took some of what I learned doing AIDS work and a lotof what I learned from feminist organizing and women's liberation, and with other women, created the Women's Cancer Resource Center. We desperately needed a resource, support andadvocacy center where women with cancer could be empowered
to make their own choices and be supported by other women in
their situation, a center controlled by women with cancer.
The Women's Cancer Resource Center has been slow to grow,partly because some of us had or have cancer and need to take56

care of our health. Additionally, a lot of energy is going into AIDS
from the women's community, and there is little left over forcancer or other disease and disabilities. Regardless of AIDS,
women have reduced their organizing work and settled into
solely working on themselves instead.
Although we are an agency that serves all women withcancer, we are not in the closet about having lesbians on theadvisory committee or serving lesbians. Consequently, we receive little funding due to homophobia. Funding agencies thinkthey are funding the gay community through AIDS. Women'sgroups controlled by women and for women get little funding by
foundations, businesses, people with money, gay men, or other
women. Women's agencies are not so popular, women' s issues
get pushed aside.
Despite all those obstacles; the Women's Cancer Resource
Center thrives. We've just gotten our own space. The advisorycommittee works on funding and programming, we have support groups, we do forums and educationals, and information
and referral and counseling.
When I found another lump in the same breast, I went for
further tests and discovered that the cancer had spread to mylungs and bones. I could not believe that I was so ill. I had been
exercising, feeling great, working long hours, just like the firsttime. I knew the implications; I knew women who had died ofmetastatic breast cancer. Yet, the reality is also one of survivaland for a good and productive life. It is now over a year later. In
my first round with cancer, I was always making decisions that
had to do with my survival; this time, I agonized over every decision as my life lay fragilely before me.
I made my decisions with what I had learned as a cancer and
AIDS activist, as a feminist. I went through my treatments, I did
my research, and live with a great deal of support from my lover
Teya and my friends and acquaintances. With the first diagnosis,
my life's axis permanently tilted; with this diagnosis, I live
constantly on the edge.
From this vantage point, there are certain things I want you toknow, to take with you, to think about, to change.
The most important thing I want you to know is that lesbians57

do not have a support network. Disabled women have found it
ironic that this conference is addressing lesbian caregivers in
relation to the AIDS service community, but not the women's
community. One woman told me that although about 80 percentof the disability attendants used to be lesbians, there are only ahandful left.
Support and care giving in the lesbian community often becomes a matter of personality. There are so many women withhealth problems, be they cancer, environmental illness, chronic
immune deficiency syndrome (Epstein Barr), multiple sclerosis- but no one recognizes that these are serious illnesses, and thatthey need to be taken care of. Indeed, because they are women,
the community has not mobilized.
Just as we were healers, experts in our fields in the Middle
Ages, we need to lay claim to our heritage now. We have many
people in nascent stages of expertise, but few experts. When we
started the women's health movement, we were taking control of
our bodies, mostly in the areas of reprod uctive and gynecologicalhealth care. Now we need experts in cancer, lUpus, arthritis,
environmental illness. I mean practitioners in allopathic medicine, Chinese medicine, or homeopathy. Going to a doctor, hoping for non-homophobia, is not enough. We need practitioners
and clinics that are supportive of us as lesbians and experts intheir fields .
When lesbians get sick, they also get poor. Women are on thelower rung of the financial ladder, and when they become ill, thebottom falls out much quicker because they are closer to it. Theylose their health insurance and can't get any anymore. If they are
lucky enough to have a job, they have to stay in it. Many women
I know work when the act of working is almost physically
unbearable because they can't afford anything else. Some women
would love to work but no one will hire them. Some women are
on SSI but hardly making it since, cruelly, the amount is so low.
AIDS is a new disease and fresh in terms of who controls
information about it. Information and resources about cancer,
however, historically have been controlled by the American
Cancer Society. Its board, as well as those of other cancer institutions, is composed of people with a lot of power to keep things as
they are: chemical company executives, the Rockefellers, the very

58

scientists standing to get money. Research is geared towards big
bucks, not to actual prevention.
Actual prevention would mean changing society - cleaning
it up - and that won't happen. When they say prevention, theyquite often are talking about small individual prevention likequitting smoking and cutting fat consumption, or early detection,
like mammograms or self-breast exams. When they find a tumor
in your breast in a mammogram, you already have cancer. They
don't mean going after the tobacco industry; they don't mean
stopping pollution or providing quality food .
We need a National Cancer Institute that does relevant research - not research into a quick cure that costs a fortune, but
into real prevention, into real cure. Everyone knows pollution
causes cancer, but does NCI or the American Cancer Society doanything about it?
That's where AIDS can make some inroads. Just like wequestion what is said about AIDS, we need to question what issaid about cancer or chronic fatigue immune deficiency, or any
other disease. We need to question current concepts of disease.
There are a few things going on in society, in which ourcommunity participates, that I find particularly obnoxious. Overthe last several years, the women's movement has become coopted by professionalism. This has also happened in the world
around us. Our society has taken the individual who may have
known something and rendered that person useless, so that she
has to turn toward experts to tell her what to do. What theyusually tell her is individualizing and internalizing.
Earlier in the women's movement we took what victimized
us - rape, battery, incest - and worked toward changing
society, while making ourselves stronger. Now we work on
ourselves individually. Most of the work is therapy work. Without changing the environment which allows such victimization
to take place it is allowed to continue. In that vein, there is a new
disease model which holds the individual responsible for her
illness. I call it dumping. I call it psychobabble.
With it has come a lot of new-age jargon about the fitness ofself. We are a culture obsessed with what the individual can do tolook good and stay healthy - we can jog, exercise, eat oat bran,stop smoking. This is not to say that people cannot affect their59own health. But this form of thinking says that it is all in our
power. So if we don't stay healthy, we must have done something, or worse yet, if she doesn't stay healthy, she must havedone something. It doesn't change a thing; it internalizes illness
and blames the victim.
This form of thinking plays out the concept that we create ourown reality, that we have ultimate freedom of choice and total
control. Fuck the world around us, the people around us, the government and corporations, even our own biology. They don't
exist. They don't affect us. There are no such things as sexism,
homophobia, racism, anti-Semitism, capitalism, pollution, biology.
I cannot begin to tell you the number of people who believe
and have said that I must not have had a positive attitude, or I
wouldn't have gotten cancer. This is cruel. Also, don't get angry,
anger is bad. I have heard that I worked too hard, that if I had justconcentrated on myself I wouldn't have gotten sick. Don't doanything meaningful. This thinking comes from a society that
doesn't want us to be angry, that doesn't want us to be activists.
Some people say having cancer is a gift. Having a life-threatening illness is not a gift. You wouldn't want me to give you
cancer and I don't want it either. Yes, my life has changed, andyes, I have learned from the experience. But I don't have cancer
because I have something to learn from it. I have cancer because
the cells in my body malfunctioned.
Cancer is said to be an emotionally caused disease because thescientists don't have a cure for it and they are not sure how it iscaused. If we keep it on an individual level, we need never findthat cause or the cure. Before they found a cure for tuberculosis,
TB was thought to be emotionally based. There was a TB personality just like there is a cancer personality, and people tried tovisualize away their illness. As Susan Sontag described in Illness
as Metaphor, once a cure was found for TB, all that was tossed out.
The other dangerous thing we have in our community is theidea that not only do emotions cause cancer, spirituality does too.
Somehow something we have done in the past is causing ourtroubles now; we are working out our karma, what goes aroundcomes around. I guess that's why women are raped and Black
people are lynched - it's karma. Take the onus off the perpetra60

tor. Accept the unacceptable. Forgive the unforgivable.
Somehow a community founded on feminist principles, acommunity founded to change society and its structures to thosethat are life affirming, has taken on the individualist ideals ofcapitalism. By doing this, we unthinkingly tossed out the notionthat we are impacted by our society and our deeds affect thatsociety. Until we understand that our actions are meaningful, we
will work individually and change will not occur.
I think this has happened partly because it is easier to deal
with disease, or any wrong, really, on an individual basis. Thatway we can believe it won't happen to us and maintain theillusion that we have control in a society out of control.
We live in a world with acid rain, with a hole in the ozone
layer, where food is mass produced and picked early with nonutrients, where pesticides are sprayed on the workers and thefood we eat, where the animals we eat are raised in a tortured
environment and fed hormones and antibiotics; we live in aw orld that has chemical dumps under housing tracts, schools,
playgrounds, with nuclear weapons and dumps, where winds
spread radiation over all of us. This is labelled pollution when, in
fact, it is invisible violence.
Our country has no national health care system. Society turns
away from the homeless. Chemical company executives sit on theboards of the largest cancer organizations and control what kindof research is done. Society must change and redirect itself to belife affirming; where individual welfare and health care is respected; where profits don't count more than people; where weare free of chemical and radiation hazards; where good, healthy
food is available; where each person is known to be significant
and worthy of life.
Let's see ourselves as healers, as workers. We need to makeconnections and engage in critical thinking, to see the universality and interconnectedness of issues. We need to take the skills wehave learned as feminists and apply them to our work on AIDS
and to our work with women. And then take the skills we havefrom working with AIDS and apply them to working in women's
health care. Let's bring it back home.
As individuals in partnership with others, we have to beworking on women's health issues. We can strongly protest a61

Department of Public Health for not funding women-specifichealth care. We can be out there in huge numbers protecting
reprod uctive health and fighting the Operation Rescue people.We
can build a lesbian-health support network, so that lesbians whoneed help are brought meals, taken to appointments and so on.
We can support institutions like the Women's Cancer Resource
Center' financially and through our skills. We can do this andmore. We need to be screaming in the streets that we will not be
killed by the dissolution of the earth and make the government
accountable to the people.
I have wondered whether the urgency I feel comes because I
have cancer, but I think that it only has brought it closer to me. I
firmly believe that we are on the brink and that we must be very
forceful in order to stop the destruction before there is no us. We
have to stop being nice girls, and start fighting as if our lives
depend on it because they do.

Special acknowledgment and thanks to my lover Teya Schaffer .

. To receive infonnation about, or make a donation to, the Women's Cancer
Resource Center, write PO Box 11235, Oakland, CA 94611, or call 415-548WCRe. Make checks payable to the San Francisco Women's Centers, Inc.

62

from Some Days I Have Cancer

More Than Other Days
A Cartoon Journal by Pam de Gaines

p

~D~E

C>A'Y~I~A\IE

CANC.ER #10 RE.. ,\-IAN
OT\-\E~

C>A'i~.

Pam de Gaines
September 23,1939 - August 24,1989
63)

Mandy Dee

Night

All

my senses are wrapped
In glass, pinched and dry
I look to my past
When I accepted fiercely
the crackle and flashes of lightthen my spastic booted
feet crashed thro' the night-street.
So I created minuteearthly sparks to match heaven's stars
and I loved my small striding;resounding my presence to others the quiet walkers
and bland straight standers.
Mostly now my itching creeping senses
comprehend only what my hands and feet can reach.
I lie as if asleep
day by half existent day
in this room
womb of growing multiple sclerosis
tomb of myoId strength
life flickering in the darkness.
And I have found a severe delightthat without life death isuncreated and undead
Death to be must first defer to life.
If the universe and mine utterly disintegrate
and unbecome
death must disperse into chaos
and the root of all creation cease.

64

So though restrained within one roomand my flashes of defianceare now restless sclerotic jabs
and hardly painless;I proclaim
death interspaced eternallyby life, then life
Suddenly no more stars tonight
Sickness creeps along my spine
I return to the mundane
abandoning philosophy
for warmth and paracetamol
breath out
breath out
breath out.

16th October 1985.
Mandy Dee died of multiple sclerosis
on 31st October, 1988.

65

Adrienne Lauby

This Mirror's Not In a Bar
Vonda owns a sailboat and used to be a lawyer. She's new. Her
check-in at Disability Group always sounds like a doctor's report.
We all talk about what happened to us in the past week andVonda tells what medical tests she had. She never asks for time
beyond check-in but she often explodes in the middle of someone
else's time. I'm afraid of her. I'm always most afraid of the new
women, before I get to know them. Every week I think they will
die unless I do something to help. That's my arrogance and how
I want things to be exactly one thing or another, the part of me
who thinks death is better than uncertainty.
Vonda doesn't believe she has to talk about her emotions. She
thinks she has them under control. By now, her fourth week, therest of us know different. But we try to be patient when she
interrupts us. Like Mil's crack, "Since we're all patients, the least
we can do is be patient with each other."
Today Vonda said her liver functions were worse and my fearslides from its hole at the base of my spine like a rattlesnake fromits hole. It struck for my guts. A doctor told Vonda to stop theblood pressure pills but last time she did, she said, she fainted
driving down a suburban street. The rattlesnake twines throughmy ribs. Vonda doesn't like to eat. Mostly she doesn't, except thedoctor told her to try to remember. Now that snake's got its
tongue out, tasting the breeze near my heart. (That's hard because
my heart is my weakest organ.) Vonda says it would be okay if
women from the group call her some time but they shouldn't
expect her to say anything back. What is she trying to tell us? The
snake rises through my forehead and stands up from the back of
my skull. It enters the room, gazing at these women I've come toknow so well. Except Vonda. Vonda's new and makes no sense tome.
What am I afraid of? I'm afraid of what I am: sick, poor,
sexually alone. And what does that have to do with Vonda? She's
my mirror and I can't stand to look.
66

I can sit and feel the fear. I can force myself to let the
rattlesnake curl. I can stop myself before I try to take care of
Vonda. I can remind myself of when I tried to take care of Liz, Pat,
Juniper and Mil, each time only proving I could barely take careof myself. I can come to this room every week and look at my fear,
listen as Vonda gives her medical report.
When my able-bodied friends ask me about the group, I tellthem something rational. I tell them about the neurologist who
refused to treat Mil until she lost twenty pounds. I tell them about
Liz's parents coming to visit.
Liz's father retired from a county road building crew anddrove out with her Mom to see her. He watched for a day and thenstarted touching her arm for curbs and walking half a step behind
to let her set the pace. Neither he nor her Mom complained orseemed impatient. It made her notice how often her middle class(younger) friends give her a hard time that way. But when she
tried to talk to her parents, they changed the subject. "I counted,"
she said, "The farthest I got on any disability topic was two
sentences." Her guess is they didn't want to hear the word
"blind."Telling someone that story is very different than sitting,sweating, as Vonda talks . Vonda says next week she's going to an
endocrinologist. I'm not sure what that is but it feels like a sixtymile-an-hour rattlesnake strike.
Yesterday afternoon I cried instead of taking my nap. I do that
often. Yesterday I cried because I do it so often, because lately I've
spent too much time in bed, alone, waiting, crying instead ofresting my heart. I've never talked about sex in group before but
yesterday as I wailed, knowing it would leave me too tired tomake supper, I promised to do it this time. So, after everyone hada chance to check in, I said I want some time to talk. The otherpeople in this group often tell me I'm brave. Today I believe them.
In a smaller town these women would already know some ofwhat I have to say, how it looked like Jan and I had a great
relationship but she left me for Kate. Maybe they'd guess theother part too, that our sex was routine and Kate clearly offeredsomething better. How, ever since, I've been in the beggar role. I
say, "Francis," and the old timers in the group look at each other.
They do know about Francis. Probably they've guessed that it67

was the bedroom which held me to Francis. They must have
known there was something as, week after week, I told stories of
how she teased and humiliated me in every other way.
By the time I broke up with Francis I'd burnt off ten hardgained pounds in stress and self hate. It was nine months before
I got my meds balanced enough to leave the house more than oncea week. Now I say outloud how sometimes I think it was worth
it. The thing about Francis was Francis demanded I show her
what I wanted in sex. Francis said it was my job to show her what
I wanted and I should figure out how to do it with my body
because she was bored with talking.
"You want to have fun?" she said. "I'm here. Start moving andrubbing. Just don't expect me to do the work for you."
I was hurt but I tried - and could not believe what it touched
off in me. Two women in a bed, each trying to get what she
wanted - we started fires to burn down cities. I needed mypounds for survival. I had to leave Francis. But I wanted to stayand dance naked with her in the bonfire. I wanted to find my own
matches, learn enough about flames to look back on our raging
heat and see it in perspective, as contained as a candle. I still
yearn, flame up unsatisfied, cremate my naps.
By the time I said this much I felt awkward, all wrinkles andflesh, big feet and stubby hands. I'm sure these other lesbians
learned this stuff in their twenties and, if they didn't, they're notabout to tell me any different. But I didn't stop. I need to start
sleeping during my afternoons instead of listening to a snake hissloss at me from between my legs.
I cried. I whined. I drew pictures of twenty more years of
sleeping alone. I complained I could die next month before I haveeven one more chance for love. I carted out words from mynightmares, "lonely .. . cold ... unwanted .. . bitter ... " Accompanied each one by another gush of tears.
When I finished people said some empathetic, encouraging,
sympathetic sentences and I had time to mop up the puddle I'd
become. I was about to nod for Juniper's turn when Vonda started
in.
"The worst part of the hospital this time was the day aresident came in to talk about AIDS and safe sex."
Her voice was slower than usual, but it seemed lower too.

68

Maybe I'm wrong. Usually she blurts her interruptions out withanger at someone who isn't here. This time I thought she washaving a conversation and maybe it was with me.
"He asked my sexual orientation and the frequency of mysexual contacts. I barely got the words out to answer. I could only
think, 'I'll never have sex again!' "She looked at me and for the first time I noticed how thin her
hair is around her face.
"It could be true, you know."
That's all she said.
Maybe Vonda' s afraid of dying even more than I am. They say
sexuality is very connected with fear of death. I don't know.
Maybe she will die and I'll be alive. Or maybe it will be me first.
Maybe one or the other of us will find a lover sometime. Maybe
we both will. I don't know. But I feel she's given me a gift and I
believe I gave one to her.
After that I don't remember much about the meeting except
afterwards when I walked outside to squat beside Mil until thevan came. We've made this our friendship ritual in the pastmonth. Today she told me I was brave and I'd made her think.
"Who knows? Someday I might lose Aggie and have to go
through it all again," she said. "Last time I was single I was ablebodied. Where would I find a lover now? Should I look forsomeone using a chair or someone who likes to play poker? I can't
imagine finding both."I've always liked Mil. She's got an admirable one-two-threekind of practicality combined with this slashing sarcastic wit.
"If it ever comes to that," I said (bravely, joyfully), looking
past her curly gray hair to stare in her deep brown eyes, "Call me
up and ask what's going on with me.""I guess I could give you a hug in the meantime," she said.
So I let my arms find their natural niche in the sun-warmed
width of her shoulders.
"You better be careful," I purr. "You don't know what you're
getting into."
She pulled on her leather gloves to wheel to the curb cut,looked over her shoulder at me and said, "Hot!"69

Naja Sorella

I Want To Love You Hot
For Frieda

I want to love you hot
my heat rising
deep burning passion
sparksfireworks
sizzling desire
but when I lay in bed
day after day
unable to fix myself foodwash dishes
or even bathe
there's not much left
for even thinkingof hot sex.
I want to love you hothour after hourof non-stop sex
in the afternoon
at the beachin the back of my new car
but when my breath
won't take me up the stairs
wakes me from dreams
reaching desperate
for my oxygen
there's not much left
for hour after hourof hot sex.
I want to love you hotpleasure youwith new positions70

watch your head turnas you moan
to the rhythmof my skilled fingers
but with lightning
streaking through my limbs
the forever achingin my muscles
there's not much left
for gymnastics in bed.
Lover sweet lover
I do want to love you hot.

,..l
~
~~

esbian.~ E t h;' c s

A forumforethicalissuesamong
lesbians.

Envisioning theWorld We Were All
Meant to Live In.
• ESSAYS• READERS FORUMS• REVIEWS/COMMENTARY

Now in her fourth yeor.

3 issues for $14; out of U.S. $16 surface, $24 air.
Institutions add $4. Sample $6.
Out or u .s. subscribers: Please try to pay wtth a check written on a bank wtth a U.S. b ranch. Thanxl
Name
A ddrass _ _ _ _ _ _ _ _ _ _ __City. stol e . Z1p _ _ _ _ _ _ _ _ _ __Counlry _ _ _ _ _ _ _ _ _ _ __LE PUBLICATIONS . PO BOX 4723 . Alboque<que, NM 87196

71

Sandra Lambertfrom Disability and Violence... I

remember that all oppression is maintained by the very real
threat of death. The more successful the oppression, meaning themore it is considered normal or regular or "the truth," the less thistool of violence is needed. While violence continues to be firmly
embedded in the system, it is camouflaged.
Physical violence is perpetrated on disabled people in manysettings; from the isolation of the nuclear family, to the daily,
almost routine physical abuse of institutional care. An extremely
successful disguising of violence is when it masquerades as"medical care." We call them hospital rooms, not torture chambers; examinations, not violations; treatment, not abuse. A history of childhood hospitalizations and surgery provides my own
primary experience of physical violence. Other than a few first
person accounts, there is little written that addresses my life ....
The search for my childhood has in large part been the
stripping away of the camouflage and renaming that surrounds
this type of violence. I read my hospital chart from when I was ababy, "The splint was not tolerated." This means I was in such
pain they were eventually forced to remove it....I lived in a world
where loving parents inexplicably and repeatedly abandoned
me. The strangers they left me with hurt me. No matter how
obedient and good I was, or how much I begged, or how hard I
fought, they still hurt me. There was no sense of outrage. It was
all considered normal and for my own good, and I was supposedly very lucky to get the "care" I did. I do not think that myexperience is unique.
This stripping away of the lies of the past gives me clarity
about the present. One piece of clarity is a realization of how
much I pretend to forget. I pretend to forget how deeply disabled
people are hated. I pretend to forget how this is true even within
my chosen home, the lesbian and feminist communities. My
survival at every level depends on maintaining good relationships with able-bodied people. Pretending can make this easier.
72

Diane Hugs

Where Have All the Lesbians Gone?
As a disabled woman, it especially bothers me that there is no
distinction made between dealing with addictive behavior anddealing with someone who has needs because of disability orillness. It has become almost "politically incorrect" to choose towork for, or even worse, become lovers with, a disabled or
chronically ill woman.
Since I moved to the Bay Area in 1978 the lesbian community
has gone through some radical changes. Some of these, such asincreased awareness of the amount of alcoholism within ourcommunity, have been positive. I view change as positive when
it empowers the community and individual women. Otherchanges have not been so good. The concept in Alanon that you
are never really healed is one that disempowers women. This
may work fine with recovering alcoholics, where one drink canlead to devastating consequences. It does not work when discussing a learned behavior of co-ing. The idea that one can never have
healthy relationships without the help of Alanon is taking a lot of
power away from women. The move towards Alanon in thiscommunity is frightening to me.
One of the most destructive concepts to the lesbian community is the lack of clarifica tion between caring for someone and coing. This is a contributing factor to why we are running short on
lesbians in the helping professions. I've especially noticed theeffect of this on the disabled community and chronically ill
women, such as those with cancer.
The number of women affected by cancer is growing everyday. We have our own health crisis right here in the lesbiancommunity, yet most of the community's energy is going either
to self-improvement programs or to gay men with AIDS. Attendant care for the disabled is in crisis because there are so few people
willing to do the work. It' s not in style to be an attendant anymore.
When I was an attendant, the majority of attendants were lesbians. It seems like a vast number of women are learning how not
to let the problems of others affect their lives.

73

There is a basic difference between caring and co-ing. Caring
happens from the heart, where the act of giving to someone elseenriches your life and makes you feel good about it. The words"co" and "co-ing" have become integral words in lesbian language, yet few seem to understand their true meanings. Co-ing
comes from feeling that it is your responsibility / duty to do something whether you want to do it or not. It leaves the woman who
does the giving feeling resentful for having given so much andgetting so little back. In the true Alanon sense, co-ing situations
come up when someone is not clean and sober. So, much of wha t
you do for that person isn't even remembered, never-the-Iessappreciated by her.
Co-ing can also happen without the presence of substance or
alcohol abuse because some women have learned behavioral
patterns of feeling like they have to take care of everyone andeverything, making everything nice, and other women havenever learned how to give, they only know how to take. But thesepatterns can change. Women can re-discover, or discover for the
first time, what it means to care, rather than "co."True caring involves an exchange of energy. When a friend isin need, and you help them out, it makes you feel good just for thejoy you bring to them. In friendships this energy flow is very backand forth. When you need a hand, you can count on a friend froma caring relationship to be there. At its best, this is a very equal
exchange, not necessarily in the exact amount or type of energy,
but in the love shared. As an example, you might help a disabledfriend paint her room. While she probably won't be able to do thisfor you, she may be the one friend who shares something special
with you, such as a loving wisdom.
As a disabled woman, I am a writer, counselor, resourceperson, thinker, sometimes a great lover, and a good friend. I require physical care for survival as do many disabled women, andI give as much as I've got to those around me. To care about someone who's disabled isn't a one-way street in a healthy relationship.
There is a difference between alcoholism and disability. A
disabled woman has no way of changing the course of her
disability. No matter how much she takes care of herself, thedisability can put her in a position of needing help.

74

It shouldn't be a crime to skip a concert or miss going out tothe movies because a friend or lover needs help. On the very sameline, it shouldn't be a crime to say, not this time, I don't have theenergy, when that's the truth. Where is the middle ground weneed so desperately? It's equally important to take care of one's
self and needs as it is to be willing to help each other out. As acommunity, we need to continuously care about each other andexamine the ethics with which we guide our lives. No time isbetter than now.

© 1989 Diane Hugs

Wheelchair AccessSculpture by Alison Ulman
Photo by K.S. Duffy

75

A Moment of Doubt

Sweet Denial
Sculptures by Alison Ulman
Photos by Julie Potratz
76

Teresa Myersfrom What's It Like to be Blind?
(And please keep all that other stuff quiet.
We can only deal with one minority at a time.)
Yah, we do what we canin between jobs,
you blind?
Then that's most of the time.
When a friend gets hurt
you blind?
then that's too often.
In spare moments when we feel like it
and WHEN WE HAVE NO CHOICE .
... "What's it like to be blind?" What shall I say? Shall I tell you
how it felt the first time a welfare worker asked me if I beg? She
called it "soliciting alms" and I had to ask her what that meant.
She's not required to ask anyone else, just us ....
Shall I tell you how it feels to be accosted on the street byreligiously ill people with a point to prove? (I must have sinned,
don't have enough faith, need THEM to pray for me. One told me
to stand still so he could spit to make mud to place on my eyes likein the Bible.) Or sick men who want to tell me about the last timethey abused a blind "Girl?" "Oh, you wouldn't even know who
raped you."
Do you want to know about job interviews where it wasthought amazing I could dress appropriately and arrive on time,or where my dog guide was the subject discussed? (Anotherinterview screwed.) I can't eat being amazing, I can't keep warmwith it or pay bills with it or even use it to wipe my ass ....
Why don't you know about our struggles with the airlines,
schools, colleges, potential employers, getting admitted to restaurants and movies with guide dogs, finding landlords who will
rent to us, and "rehabilitation," "welfare," and government
agencies who have the power to affect every aspect of our lives?

77

Why aren't there self-defense classes taught by women for disabled women? ..
I call the fire department because of a hot plug in a receptacle.
The firehouse dispatcher is a friend who knows I'm blind. He says
it on the radio and a stranger hears my address and disability on
his police scanner. He arrives to save the day and stays, breathingalcohol into my face and trying to get close after the firemen leave.
A woman publicly praises the mother who abused me fordoing such a wonderful job. The reason it's wonderful is that I'm
blind and it must take a special kind of person to raise a blindchild ....
Why must I always fit myself into others' categories so they
can have me, neat and tidy, in square boxes? Why can't we all
work at becoming spiritually big enough to understand something of all that each person is?
The good reverend at our blind people's meeting makes somejoke about a lady who's "deaf as a post." ... Somebody makes aqueer joke in conversation after the meeting.
"This is the fifth floor," the man says in the elevator at work.
"And your stop's six, that's next." He doesn't say it to sighted
workers and I've worked here two years.
Once a blind man asked me, knowing I'm Cherokee as well as
white, "You know how you can tell when an Indian's having her
period?" I told him I didn't want to hear it.
Lesbian friends say it's bad when men who are disabled or ofcolor get shafted but I have to remember that because they aremen they have the power to shaft disabled womyn and womynof color....
YOU ALL try to cut me into little pieces, keeping for yourselves only those bit to which you best relate . .. . I live alone, insilence, away from question-barbs. I reach for the sky, walking
outside to lift my head to the encompassing sky, full of airs andstars, and room enough to be.

78Tee Smith

Hallowmas Circle
Trapped Inside My Body
She's sitting between my legs but I don't feel her. I'min trouble.
I send her for help. I'm fading. My mind says maybe they will
leave soon and I can fake my way through this. My mind ismoving so fast but my body continues to fade. There is a womyn
to my right - she's trying to hold me up. Oh! There are many
womyn pulling me on the floor into another room. What a way to
end a wonderful week-end - trapped inside my body.
Where am I - Where is Lori - What about Katy?? Oh, I'm atPagoda.* New womyn look at me. I sign "fast fast toilet." I heartalk, plans on what to do. I try to hold that muscle while they talkand plan. I'm not even sure that that muscle is there. "Too late"I sign. I'm trapped inside my body.
My back is hurting. Like being on an operating table. I write
saying "no hospital." She looks at me and says "no hospital." I
believe her. My head is exploding. My right side is numb. - Yes,
I hear you, Kay. - I wish I could talk and repeat all that I hear. I
try to sign. - Damn! - I think I should learn more sign. She's
singing to me now. I smile. Oh, look there is my body on the floor.
I'm in the sky. Loving womyn around my body. Maybe I'm
gonna die. Maybe the hospital. I'm back - trapped inside mybody.
I want to go home. I'm confused. Oh shit! I'm now at the topof the stairs. My body feels like 800 pounds. "I want home!" I
don't care if! fall down those stairs. I don't feel anything anyway.
I see Val at the bottom. She looks very scared. I'm a strong dyke
even in my weakness. Oh thank-you Goddess - I'm in my wheel
chair - I'm going home. Trapped inside my body. Trapped
inside my confused mind.

This originally appeared in Hilffine, the disabled wimmin's newsletter, #1 .
*Pagoda is an ocean-side lesbian residential/resort community.

79Patty Overland

Fever
hot sparks shoot thru rivers of pain rain
blood splatter everywhere what happened to you?
melted globs of metal stuck in your sidepiercing your skin thru layers layers you didn't
know you had so many layers fever girlit all started with fever hot breath on cold
winter's nite shivering shaking with thecold then the heat body twisting in a dance
you had no control over fever girl 'til
you thought you would die had seen yourdeath in the eyes of the woman standing
over you holding the cool cloth to yourheated brow fever girl 'til it
dropped and you thought you were prisoner
in an Aleutian Island ice cave stuckwith the shivering you couldn't stop
the shaking the cold biting to your bones
hurting they put you on morphine toforget the pain spasms shooting down
your spine new stitches on your spine
feeling like it would burst open withall the pain you held inside you
the morphine put you on a comfortable
cloud soft cushy you didn't want tocome back down why come back down?
your body hit the hospital bed witha thud and you spent months trying
to put together the broken piecesof your mind fever girl it took
you to a place you never quite cameback from it took somethin' out of you
too scary to one more time feel your80

death move thru you one more timeto think it's over and you been wantin'
to live tryin' to live so bad so
hard fever girl come back home
i'm waitin' for you with a soft
bed and lovin' arms.

Crip Fantasy #2
Peni Hall
81

Jasmine Marah

Dyslexic Dispear
The trouble with crying while driving is that one's vision can beblurred .
My life is always a little blurred - Peoples speach blurs, slurs,
I loose words - and find people shouting at me, often angry if I
can't get what they say the first or second time. I'm not deaf- orseverely hearing impaired, - I'm dyslecic.
I know that it is annoying to be with me - but I never reallyrealized how much until I began to ask friends what the barrier
was between us.
Friendship, for me, would start out fine - we'd speak - findmutual interests, mutual ideas. Then, after some months I would
feel barriers going up around me. I can get no closer, I can find no
more paths inward, and our intimacy does not increase on any
level. I get invited, like the country cousin at a Jewish wedding,
to be always on the outside, an observer of the main action.
Everyone is kind, I am treated politly, but not sought after.
How is this a function of dyslexia? It is because the world has
been so absent for me, that I have not learned how to Live in it. I
have been a person, with an enormous intelect, who has watchedmany of my poorly expressed but totally original ideas be heard
by others, developed and applauded. This has not helped me feel
confident or appreciated.
I have been an adult for about 20 years, And I have not had 20
years of worth of appreciation. You say none of us have? Not so- many people get positive feedback from their group and insome cases, their public. What this does to me now is: I am too
intense and too much in need for anyone person to feel comfortable with me. It is as if! want twenty years of recognition, on every
leval, at once Sounds like a lot of complaining to you? It would be - if I
could change myself. But being dyslexic is not like being alcoholic. It is not a disease, and it can't be cured. I cannot change my
behavior without positive reinforcement. And I can't accept, any
more than anyone else can, words that are said for their effect.
82

Words of praise can be brief, and scanty but they must be from theheart.
What else happens because I'm dyslexic? Well, in the writting
group, after we read a piece of writting that someone has given
us coppies of, we go back over it. I can't ever find the place,therefore I can't follow the criticism, and slowley I stop trying. I
can't find my voice, don't know what to say, am lost and divided
from my group. The voices around me blurr - I am fuzzed out.
I feel stupid, stupified, of no value. There is no way that positiveenergy is going to come to me in this situation, no way that I will
be helped to change.
What other things happen?- There are the simple physicalthings - like I'm driving the Freeway, and the sign says Glendale right, Burbank left. I want to go to Glendale. There are
3 possibilities - (1) I could read the sign the same way thateveryone else reads it, and get to Glendale - (2) I could read thesign correctly and mix up wich road is left and wich is right, andnever get to Glendale - (3) I could read the sign incorrectly andnever get to Glendale.
Or, I can spend hours wandering in the maze of a large Bldg
- like a hospital, because the room map is incomprehensible tome -. On the other hand, I could instantly understand the mostcomplex directions and mountain road maps - and get from one
back county to the next with no trouble.
I can look at the signs on windows and see "Long Term
Photography" when indeed it says "Lonny Tunner - Photographer" I could read this sign out loud - and ask a companion what
it means, and be embarrassed when she tells me what it reallysays - and do I imagine it, or is she anoyed with me?
Or what if someone tells me a date and time to meet them andI write them inversed, like the 7th for 7 PM and 12:30 instead of
the 12th? Will we ever meet again? In one case at least, No. Toomuch trouble to put up with.
In school, when an assignment is distributed. And I read it,what if it makes no sense? So I do go to the instructors office, andI do ask for clarification - I get treated like chopped liver -.
Proffessors who know that I'm dyslexic grade me harder, andgive me a lower grade than they would otherwise. why do I tellthem? Because I need extra time to write sometimes, or don't

83want spelling to be held against me. I've never told a professor
that I am L.D: without them first having asked me about my"rude" spelling or some such direct question. I can't use a
dictionary. They don't get that I can't begin to form the sequenceof letters in a word - I know it when 1 see it - But its spelling is
as inaccessable to me as the variatable name of plants is to mostpeople.
I attended a class all term, I took the final exam, three hoursof writting, and looking at slides, and identifying the problems ofa housing development or a shopping center from one slide. I got
95 out of 100 on that final, but for some reason, got only B- in theclass. When I spoke to the inst~uctor, she thought that I was notcapable of entering grad school- telling me that only the mostintellegent people could be grad students.
She said that, seeing a fat women, whom she knew to bedyslexic. She knew because I had to present letters to her telling
her that I was L.o. because otherwise spelling would countagainst me on the exam.
Or what about when my dear friends laugh at something I say
that is a mistake - even if they think it's "cute?" - what about
if they repeat it? What if they think its cute and always repeat it
to me? 1'm lost - I can't find my way - I mean I want them to likeme and to feel close to me, and perhaps repeating my mistakes orodities to me is a way of showing approval and acceptance. But
to me it feels a little like imatating a disabled persons faltering
walk to show that you think its sweet But what of the positive virtues of being dyslexic or L.o.? For
there are many - I see; I can lie in my bed at night, and in a dimly
lit room, see the moleculare pattern of the atmosphere in myroom. you don't believe me -. I see the halos around birds, cars,
airoplanes - . I see the energey egg surrounding trees, Halos,rainbows around street lights and car lights. I look into the sky
and I see the stars wheel, their trails of centuraies arcs and crosses
and paths, and then the sky quiets and it is all as it is for every
other observer.
I can listen also: I can listen to the heart ofthewheather-and
I can travel between science and art, and different sciences, to• Learning Disabled84

understand how molecules in a body work, or show the universe
is moving.
I taught physics in a high school last year - relativity, andmusic. But I can't spell, and I can only do math very slowely, andthen only if no one talks to me about it.
Dyslexia is a physicial, not psychological, disability. The grey
and white cells of the brain, wich are ararged in colums in mostpeoples (heads brains) are randomly aranged in some dsylexics
brains. The connection are different. (Sol move slowly - I am
moving though so much uncoded information.)
For some poeple who are physically disabled, life is trying
and frustrating, in part because they want to continue to be jocs
and can not get their bodys to cooperate. Despite the fact that they
may be also in much pain or discomfort, at a particular moment,
they may be most frustrated because they can't play 2 hours ofball. Their will to play is still as strong as it ever was, and theirunderstanding of the game is better than ever, but their body
won't cooperate.
Well for me - it's my mind - it is as though it is pepetuallycaught in chains or a large net. I can think clearly, and I canunderstand most anything that comes my way For example, I once invented in twenty minutes, a solar
operated water purifier, portable that would convert sea water topalatable H20, and be self cleanig. But this same mind is in chains- I cant speak clearly can't remember the name of things -Make
up words that do not exist.
In my field of Architecture, I can't draw it all either. I don't
remember how to make my hand go - so I go slow - and I
repeate my self because I don't really know if you'r paying
attention or not, and I don't finish my sentences - Because thefinish seems obviois. So you, whoever you are who might belistening, get bored or anoyed and tired of me and I can't help it.
I am too strange, too needy, to be loved. And I am too alone
to change. Thats why, at age 40, I can't stop crying.
I have often wanted to stop living. I have felt that I could do
nothing to change myself or my circumstances. I go on because I
have felt that I could not be so inconsiderate to my children as tokill myself. Perhaps this is an excuse, and certainly other wimmins' lives' are valuable without children.

85More ...
What I really hate is when instructors will discount mydsylexia - For example if my lines consistantly don't meet when
I am drawing, and I know that it is because I'm dsylexic and to
make lines meet without crossing is a major effort for me. My
hand and eye don't move together as a team. Any how here I am
in a studio class room & the instructor is saying your work issloppy - and I say - oh. I'll fix it up, it's because I'm dsylexic.
and the instructor says - No such thing - Its just lazyness Take more care.
Or is an English class, my paper written in class is given a low
mark - I ask the instructor why? He says the spelling - I say
what about the content - oh he replies the content was great,very good, one of the best I've seen on that issue. Well I'm
dsylexic, I can't spell, its physically impossible for me and I can't
use a dictionary Well, I don't give a special break to Blacks or people in wheel
chairs - & I can't give you a break either.
Or in a library, I go to the reference librarian and explain that
I need to find a listing for something. I tell her that the card
catalouge is difficult for me. The words seem to float up off of thecard. I explaind its difficult to read, that I have a hard time withthe periodical guide. She is all kindness and helpful and asks alittle about what I need. Then she brings me a huge closelly
written book wich is a list, three colums wide, on flimsy leaves.
Not all dsylexics have developed social problems as a secondary reaction to the inacsessabluty of the environment.
Some have developed an inability to see how to order theirown lives. You will see these womin ministring to others, helping
them to get things done or to understand their feelings - but they
can't seen to find a path or way for themselves. This is common
to women you might say. Many women don't know what theirlife work is - But given 2 wimin of the same gifts and skills, theone that is dsylexic will not have been able to obtain enough clear
feedback, for herself, about what pleases her to do, to be able to
make an evaluation of what she is suitable for.

86

A yofemi Stowe Folayan

Dyslexia
dedicated to Helen Irlen

Wards
bobbing like boats
afloat on a shimmering white paper sea
crushed together on cresting waves
foaming and swirling
sailing slowly out of sight
Each letter with its twin
snaking in inky trails along the page
grinding understanding
to a fine choking dustthat suffocates my mind
Words
lost in thick grey cloud formations
and chalky nebulae of stars
on the slate board
carried in sealed time capsules
drift beyond my understanding
Numbers
unintelligible Sanskrit
playing hide 'n' seek
dancing around each otherchanging partners
in a joyous celebration I can't joinThoughts
wait patient as grazing cows
no cowherd to lead them home
only tall fences and stone walls
blocking their passage
keeping them far away

87

Eyes
itching and burning
blood vessels like welts
whipped into their straining surface
tears evaporated
leaving a salty sandy desert
poking out of my head
useless periscopesthat never pierce the waves
where the words still float
like senseless carcasses© 1988 Ayofemi Stowe Folayan

SPIRITED LESBIANS
Lesbian Desire As Social Action
by Nett HartSPIRITED LESBIANS beg in s in aheart of self· love for ourse lves as
Lesb ians an d spi ral s thro ugh th eenti re worl d creatin g socia lchange as a n e ffec t of th at love.

59.95 pos t paid 160 pages

88Susan Hubertfrom an untitled essay in progress... I

continue to write about disabilities and so-called "hidden
disabilities." All disabilities cannot be easily categorized as either
hidden or visible, though, as there are different degrees of visibility from condition to condition. My condition manifests itself
differently from person to person and can change over time oreven from one moment to the next. The nature of my disability isoften unclear to "outsiders" and, even if it is apparent that I'm
differently abled, even persons who try to may not be able todetermine what needs I have. At such times my needs are more
hidden than my disability .. ..
Meeting my day-to-day needs isn't easy. In this country there
seems to be an attitude of "you're not getting anything special
until you prove that you need it," and my varying ability to passas able-bodied increases the burden of proof and need for explanation. Proof is required for everything from financial assistanceto handicapped parking permits. The demand for proof is often
accompanied by the fear that people will take advantage of thesystem, and anyone who receives anything "special" is looked
upon with suspicion. Governmental agencies, therefore, requireparticipants of certain programs to verify their eligibility repeatedly. I've had my share of frustrating battles with government
agencies, but I may be more disheartened by the struggles withpeople with good intentions who still demand proof, explanation. Women who think that handicapped parking is only for
persons who look disabled, for example, are trying to be advocates.
In an ideal society, one would only have to say what she needs
to get it - or perhaps not have to ask at alL.When we create
temporary women's space some women may be so involved in
the patriarchal culture that they've internalized some of its values. Even the attitude that disabled women are somehow not
fully human is found in women's space. One time I was leaving
women's space in a van for differently abled women. The vanstopped for a woman who laughingly asked the driver, "Can you
89ride this bus if you're normal?" She didn't seem to understandwhen the driver asked her to be more sensitive to the other riders.
Thatwomen are attempting to accommodate differently abled
women at community events gives me hope. However, evennecessities are sometimes denied because to provide them wouldbe "impractical," as if services for differently abled women are optional.
If services for differently abled women are considered optional,
my needs can be ignored even if I don't have to explain them.
And, of course, if it's too impractical to provide these "optional"
services, it'll take more than asking to get them. The demand for
proof and explanations must be eliminated, and services fordifferently abled women should be seen as essential and indispensable. We need to change attitudes so instead of asking why
a service is needed, we ask why it isn't already available.

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90

Lynda Koolishfrom We Are the Canaries:

Women, Disability and Coalition-Building*
For the past five years, Susan Koppleman has been nudging me
to deal with my identity as a disabled woman. And for the past
five years, I have refused. I was too embarrassed, too afraid of thestigma, too afraid of its threat to my professional identity. Too
afraid that naming it would give it control over my life.
I have spent the past fifteen years as a radical feminist, aMarxist, a lesbian, a fighter. But this is an issue that I have been
terrified to take on. To speak about disability renders you vulnerable to the charge of hypochondria and malingering. Or maybeeven worse - of being needy .. ..
I have immune dysregulation. It is a life-threatening illness,
and I have spent the last five years denying that fact. Pesticides,
sulfites, chlorine, food additives (for that matter, most foods),
hormones, phenol, formaldehyde, gasoline, cigarette smoke, perfume and tar are among substances which can cause a sudden
gross fluid imbalance in my body. When it affects my head, I get
fluid in my brain. It hurts. I also can't think straight. When it
attacks my joints, I can't walk. When it attacks my lungs, I can't
breathe.
When I come to this conference, I have to take all my own
organic food, spring water bottled in glass, and all my own 100%
cotton bedding, laundered in baking soda. To get on the plane, I
have to take shots of ethanol, perfume, and cigarette smoke. It's
inconvenient.
Every year, I have to write to the conference organizers andarrange with them for me to be able to bring my own food into thedining hall. This year, I was told that under no circumstances(because of an Illinois state law) could I do that - even if I paid
for a dining room ticket and ate none of their food. The director• From a paper given at the National Women's Studies Association Conference,
1986, excerpted and slightly altered with the permission of the author.

91

of conference housing's solution was that I could eat all my meals
alone in my room. I was not to bring food into the dining room not even the only unchlorinated water that I am permitted todrink. ...
Women with disabilities and chronic illnesses have the samerights as able-bodied women to enjoy the community, conversations, and friendship that accompanies breaking bread together.
In the past year, I have considered civil disobedience aroundissues of divestiture, nuclear politics, and Nicaragua, and haverejected it only because my health - in fact, my life - would be
jeopardized if I were jailed.
As I was being threatened with arrest in the conference dining
room for sneaking in my own food, Merle Woo quietly reminded
me of those who went to jail in order to force the movie theaters
and the buses to allow people with wheelchairs access. Suddenly
I saw that disability was not just my own private struggle.
Accessibility, integration into society, the right to a decent and freeeducation and to quality medical care, the right to control over our own
bodies - including full reproductive rights - the right to jobs, decent
working conditions, and a living wage: these are our demands as
disabled women, and they are our demands as workers, people of color,lesbians, socialists, feminists .
...Disabled women as a group live under an economic andpolitical system which is often directly responsible for the disabilities inflicted upon us. As Heidi Durham noted, "The only
thing this government has consistently and conscientiously done,in fact, is to help big business profit - enormously - from ourdisabilities.// 'We are the so-called consumers of social services. Whichmeans that our mistreatment is the source of employment for
many of you, and our situation is identified as the burden of social
security and as the source of your high taxes. Most of us are poor.
Only 42% of us are employed. And 75% of those who are employed are underemployed and underpaid .
...You think that being polite means not meeting our eyes if
you see one of us in a wheelchair, or with cerebral palsy, on the*Heidi Durham, The War On The Disabled: Adding Insult to Injury, FreedomSocialist Publications, 1987, p. 2.

92

street, or in a restaurant, a movie theater, or a concert hall.
You don' t think we're pretty.
You don't know we're sexy .
.. .We in the disabled community have learned to identify ourstrengths, our wisdoms, and our role as ground-breakers for the
feminist community. Now that we know we have at least as muchto offer the able-bodied community as you have to offer us, we arewilling to risk becoming visible and articulate in your midst,
demanding that you listen to us and learn from us and work withus .. ..
But you better listen good and well, because we don't want tohave to waste a lot of time saying it over and over. We want to get
on with our lives.
We need to make it more and more safe for women who aredisabled and chronically ill to publicly say so.
We need to have fun together.
We need to see that while NOTHING about oppression isbeneficial, RESISTANCE to oppression teaches us, enlarges us,
engages us ....Resistance to marginality, to otherness, to invisibility, to silence, is the agenda of all oppressed groups, all suppressed peoples. And it is an agenda which can help to keep us
from being fragmented and alienated from one another.

rWOMAtJEWS---------~--,--:'
N"iC ~ NfWWI'fII AHO CAU~ Of MNTS

I'll taU Q one-year IUblcriptlon:
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93_______ _.

Judy Freespirit

OnWardG
The clock on the wall over the nurses' station says 5:05. I forgot tobring my wa tch when I left home at 1:30 a.m. to drive myself once
again into Emergency at Kaiser Hospital. My asthma is especiallybad this time, and again it's happening when I have my bloods. I
wonder what the connection is.
There was a patient in the waiting room smoking a cigarette
when I arrived. She was holding it down below the eye level of thereceptionist and sort of cupping it in her hand. I could smell it the
instant I opened the door. Someone was also wearing very heavy
perfume, the receptionist, I think. I stood in the open doorway,
gasping for air as I got up the nerve to speak to the woman with thecigarette.
"I'm having an asthma attack," I wheezed at her, "and I need
you to put that out."
She put it out but not before grumbling some obscenities
under her breath. She looked pissed as hell. Then, when the nurse
took me ahead of her, she was really steamed.
"How come you're taking her first?" she complained, "I could
be dying of pneumonia out here."
The nurse just told her it was because I couldn't breathe. That's
all I heard anyway. I didn't blame her for being pissed, but I surewas glad they took me right away, cause I was real sick this time.
The young doctor on duty was the same one who had seen me
last night and he remembered me. This time he looked sort ofscared. Not the nurse though. She was totally cool. She just kept
working real fast, zipping those needles into my arm and saying"stick" just before she jabbed me. That juice they shoot me full ofisa speed freak's dream. But me, I don't like that high, nervous
feeling it gives me. It reminds me of all those years I was on dietpills as a kid. I used to feel like climbing the walls. I never learned
to like it the way some people do.
94

The nurse stuck me a bunch of times and gave me a treatment
on the breath therapy machine. They took my blood pressure
which was really high. That usually happens when I'm having anasthma attack. They don't volunteer the information about howhigh it is, but I always ask. They have to tell you now, it's the law.
The medicine was making me shake a lot. My teeth wererattling in my head, but the wheezing just stuck with me. I knew it
would . I could tell the doctor knew too, but they have this proced ure they have to go through, so we tried all the things firstthatwe
both knew weren't going to work. Then the doctor told me I'dprobably need to be on IVs and stay the night on Ward G.
That's the name they use here at Kaiser for the holding ward.
It's a kind of Never Never Land between Emergency and one of
the regular wards. They keep you on G hoping you'll get better in
8 or 12 hours and that will save them the trouble and paperworkof admitting you to the hospital. I'm an old hand at Ward G.
The bes tthings abou t being on G Ward are they give you a real
bed which is a lot more comfortable than a gurney, you get a table
across the bed so you can write and the nurses don't smoke on
duty like they do in Emergency.
It's about 6:00 a.m. now. There's a voice coming over the loudspeaker saying, "Code Blue, room 620." She has said it three times
now, real calm and gentle-like. "Code Blue, room 620," she says,
like nobody's gonna know that someone in room 620 is probably
dying. Now she's doing it again! What's wrong? Isn't anybody
responding? God, I hate how helpless I amin the hospital, how dependent. She's saying it again! Please, will someone go to 620 already?
I can't stand the pressure. OK, she finally stopped. I hope they got
there in time. I'm afraid tonight, more afraid than usual, of dying.
I was saying before what's good about G Ward. The best thingis having a bathroom right near the bed, just a few yards away. In
Emergency if you get put in one of the rooms where they put the
sickest people, the bathroom is a city block away. And since they
put me in this stupid night shirt, or w ha tever you call it, tha t closes
in the back and only goes half way around my fat body, my whole95

back is exposed. I have to walk through the hallway dragging thisIV pole and my backside is sticking out for everyone to see. The
halls are always filled with patients and their friends and family
and various staff people. It's really too much.
Now for the bad. The worst part for me is that G is where thestaff refrigerator, microwave and coffee machine are. Doctors,
nurses, aides, maintenance men and security guards are comingin every few minutes, getting food and coffee and yackin' up astorm. Real early this morning there was this big box of Colonel
Sanders Kentucky Fried Chicken in the refrigerator, and each staff
person came in, took some out and put it in the microwave. The
smell of greasy chicken was all over the ward. They kept taking
out potato salad and cole slaw and apples and juice and milk. I'min the bed right across from the refrigerator and I'm starving. I
want to ask for something to eat, but I know it's for the staff. They
don't feed the patients during the night. If I were a thin woman I'dhave asked for some anyway, but I didn't want to provide themwith a funny story about the fat lady who wanted their food.
I've been up for 48 hours now and it's been over 12 hours since
I last had anything to eat. In a few hours they'll bring me breakfast.
I can guess from experience what it will be: an asthmatic's nightmare! A cheese omelet, Wonder Bread with butter, a glass of milk,
and some apple juice. Everything that makes me wheeze more. I'll
eat it anyway, whatever it is. They don't know a thing about
nutrition and diet for allergies. I wonder what they teach dieticians in all those years of schooling.
For a while there last night! got real scared. I don't know why
except it was unusually hard for me to breathe and suddenly it
occurred to me that I might die tonight. I flashed on this scene fromthe movie Resurrection where this woman dies in a car accident
and she goes to this place that's like a tunnel with bright light atthe
end. All her dead relatives and neighbors are there, welcoming
her. Well, Ibegan to feel like I might be seeing my Bubbie tonight,
and I started to cry. I suddenly missed her so much. I never reallylet myself feel how much I missed her till now. I could see her in mymind like she was when I was a kid. She died when I was 11 or 1296

years old. She was very short, maybe 4 feet 10 inches, fat andwrinkled. She had the finest, most pure white hair I've ever seen;a bobby pin wouldn't stay in it for 2 seconds . And she had soft
brown eyes. When she looked at me with those eyes I knew I was
loved . Even though she didn't speak much English and I didn't
speak much Yiddish, we managed to communicate somehow.
I was crying and thinking about seeing my Bubbie and then I
said, "No! I'm not ready to go yet. I still have more stories to writeand more women to know and love. It' s too soon. I'm only 47 andI just started living 10 years ago when I came out as a lesbian. It's
too soon. I won't go."
Then I looked at the door to the hallway in the wall next to therefrigerator and saw this thick white tape spelling out the word
"NO!" It was about eight inches high and I looked at that word
"NO!" and Isaid to myself, "I'll just keep looking at it to remind me
that I can't die today. For one thing, nobody knows I'm here."I realized how alone I am when the woman in the next bed
came in a few hours after I was admitted. Her daughter was withher, and it made me think about how I don't have anyone herewith me, no family. I have friends and even a lover or two, but
nobody I feel like I want to ask to drive me to the emergency orcheck in to see how I'm doing. It' s easier this way. If I call someone
they get all upset and then I have to take care of them and it takes
more energy than just coming in by myself. So anyway I can't die
tonight because nobody would know. I'djustdisappear. Of course
eventually somebody would see I wasn't at a meeting or didn't
make a lunch date and they'd ask each other, "Have you seen
MaIka lately?" Sooner or later somebody would call the hospitaland they'd be told I'd died days ago. Since the hospital has no
information about "next of kin" they had just given me a pauper's
funeral. You can't leave a smelly old body lying round indefinitely, you know. Anyway, I'm going to live this time, so it doesn't
matter. Next time I'd better make some arrangements.
I almost blew it with the male nursew hen I first came in. I mean
it's as important for the patient to have the right bedside manner
as it is for the staff. Even more important since we're talking about97

survival here. I've developed a system over the past few years.
The theory goes like this: The best of nurses is overworked and theworst just couldn't care less. The more you can do for yourself thebetter; that way when you do need to ask for something, they'remore likely to be willing to do it for you. 50 I straighten my own
sheets, push the red button on the IV machine when it starts
beeping, get myself water, things like that. The other thing is thatyou have to be polite but not too polite, or they'll ignore you. The
most effective method I've found is to be assertive and appreciative at the same time. For example, when I first came to G Ward
tonight I realized I'd need some sanitary napkins. Now if I had
been mealy-mouthed about it I'd have gotten them eventually,
but the nurse might have been hostile and seen me as a simpering
weakling, and done as little as possible after that to make me
comfortable. 50 in a strong voice, level but not pushy, I said, "I'llneed some sanitary napkins and some ice water and that should
do it." He brought them to me right away and I smiled slightly, not
too friendly but acknowledging the effort. Then he hooked up the
IV bag to the machine. Now that's where I made my first mistake.
Instead of just keeping my mouth shut I said, "I'll just unplug andtake this in with me when I need to go to the bathroom." "No," hesaid, "you have to call me each time, and if you have to go too often
we'll have to give you a bedpan. The doctor put you on bed rest.""Well," I thought, "we'll see about that, Honey. I'm not using
any god damned bedpan as long as I'm conscious." 50, I'd justquietly slip out of bed and slip back into bed when I was done andplug back in. I think by the third time he must have realized what
was happening. He just ignored it.
It's after 90' clock now. Around 7 a.m. I could hear the night
nurse filling in the next shift, but I couldn't see who she was. WhenI finally did see her I knew I had my work cut out for me. It was
5harmina, tough as nails and slow as a snail. Not only that, but I
was so hungry by this time I could have eaten the bedclothes, and5harmina has this thing about taking her good old time about
feeding patients, especially about feeding me.
The first time I was on Ward G, about a year ago, I made themistake of telling 5harmina at 7 a.m. that I was hungry. I ate
around 10 a.m. that time. Now I know she's fat phobic and I have98

to charm her to get anything at all. So when she came to check my
IV around 8 0' clock I smiled and said, "They could use three moreof you on this shift. They sure do give you a lot of work to do." Shesmiled and then I said, "I love your ring." She liked that. I got mybreakfast about 8:30.
Manipulation sometimes doesn't hurt anybody and it canhelp me survive. I wish I didn't have to do it. I'm not sorry I did
though, even if I was right about the breakfast. It was worse than
I had expected - French toast made with two thin slices ofWonder Bread, two soggy bacon strips and a carton of milk. There
were two orange slices too, which had been heated with the
French toast in the microwave. I ate them anyway. I was tempted
to pour some of the honey-cinnamon syrup on the styrofoam dishand see how that would taste, but I squelched that idea. I can't
afford to die of styrofoam poisoning when I'm in the middle ofwriting a story. I left the milk and the dish and ate everything else.
I'm still starved. Maybe later I can get someone to come over andbring me some real food.
It's now 9:30 and the doctor who came in at 9:15 said I'm notsounding very good. I could have told him that. They can only
keep me on G Ward till noon and then evaluate whether theyshould admit me or send me home. Either option scares me.
I'm feeling really uptight now, scared, pissed, wheezy andpanicky. About half an hour ago I phoned my boss to say I' m in thehospital and I don't know if they are going to let me out or not. She
sounded tight-lipped, not happy at all. "So what does that mean?"
she wanted to know. I said, 'Well, I'll know around 12:00 or 1:00 if
they're letting me out or admitting me and I'll call you then." Shejust said, "OK, let me know when you know." Then she hung up.
I spent the next 5 minutes doing a scenario in my head, aconfrontation where I go to work and she says to me, ''Now look,
I want to be fair, but I have a business to run here and you're
missing too much time. I know you haven't used all of your sickleave, but you're out when I need you, and it's really a problem."
So I say, "OK Carla, what exactly is it you want me to do?" and shesays, "I just can't have this. I need to be able to depend on you. I
99want you to be here when you're supposed to be here.""You're saying you don't want me to be sick and miss work,
right?"''Well, yes, I guess so""OK Carla, I won't be sick any more.""Now wait a minute," she says, "How can you promise you
won't be sick?""It's just as reasonable forme to promise," Isay,"as itis for you
to ask me to." I leave her on that. She's very guilt-ridden andliberal as hell. She also has a lot of power over my life. She pays me
a good hourly salary and gives me holidays and sick leave, but she
won't pay into unemployment or disability so I'm at her mercy. If
I lose my job or become physically unable to work, I'm out of luck.
So I'll come in to work as much as I can, unless I'm really dying.
Meantime I think I ought to look for a job where they're not so nice
but where I can get unemployment and disability benefits. I feel
really sad. I hope the fantasy doesn't have to be played out all theway. I like working for Carla.
Around noon Sharmina comes over to my bed with a big
syringe full of medicine and she starts to inject it into the N tubing.
I say, "Wait a minute, what's that?" She says, "It's just some more
Solumedral." "What do you mean 'some more'? What is it? Is it
steroids?" "Yes," she says, "you've been getting it all night and it's
time to put in some more." Now I'm pissed. I say, "Nobody told
me they were putting steroids in the Ns. I specifically asked in
E.R. to be told if they were going to give me steroids." "Lookhoney," Sharmina snaps, "I can't control whatthey do or don't doin E.R. I'm just giving you what the doctor ordered." I want to cry.
Damn them, those arrogant, fucking-bastard-prick doctors.
I decided to let myself cry. I was just getting into it, allowing
the tears to splash onto the blankets when this doctor I hadn't seen
before comes by to make his rounds. It's been hours since I've seena doctor, and just when I'm trying to have a good cry, he shows up
and says, "Why the tears?" "I'm really angry," I tell him. "I justfound out they're giving me steroids. They promised they'd tellme before they did that. I wanted to check with my own doctor
first. I've been on steroids for 5 months now and I've been cutting
down, trying to get off them. Now they've upped my dose and I'm
100really mad that I wasn't informed like I was promised.""Well," he says, puffing himselfup tohis full height, "if you've
been on them for 5 months that's all the more reason to increase
them if you're having an attack."
I'm not convinced. "I'm angry about not being told," I say.
"What's at issue here is informed consent. I feel totally out ofcontrol of what's happening to me.""Now,now," he says, "we're giving you the best treatment weknow how." Then he leaves as suddenly as he arrived.
I'm chewing on that last piece of drama when Maude, thenurse who's now assisting Sharmina, arrives and sees me writing
in my journal. Are you keeping a diary?" she asks. That's when I
made my second mistake of the day. ''No,'' I say, "I'm writing ashort story. I figure something ought to come out of this experience." The minute it's out of my mouth I know it's a mistake. I
don't know how it will come down, but I know I'm going to haveto pay for that one. Maude doesn't disappoint me. Next thing I
know she's coming over almost seductively, placing a thermometer in my mouth and saying, "I hope you're putting goodthings about the nurses in your story.""Of course I am," I answer quickly. "The nurses are the bestthing going around here." The next thing I know she's telling me
how she's trying to lose 15 pounds. I mean I'm sitting here in bed,
all 300 plus pounds of me, and this 5'-9" woman who weighs
maybe 150 or 160 at most is telling me that she's on a diet. Now I
don't want to hear about it, but I'm not in such a favorable position
here. I don' twant to make things worse, so I just say, ''Why are you
dieting? You look fine to me." "Oh," she says, "I need to lose 15
pounds. I lost 50 pounds not so long ago. I got down to a size 3 andI felt sooooooooooo good. But then there was all this food around.
You know I hardly eat anything at home, but here at the hospital
they give us free donuts every morning, and I just keep eating. I
gained back 15 pounds so I have to lose it." All the time she's
talking she's acting real coy and charming in a way she wasn't
doing before. I say to myself, ''Hey now, what's going on here?"
Then suddenly it comes to me. She's auditioning! I mean she
wants me to write about her in my story. She keeps coming back101

and talking to me every few minutes. At lunch she gives me an
extra roast beef sandwich when I say I'm really hungry. Now thisis unheard of behavior from my past experience. So she wants to
be in my story? OK, so she's in my story.
It's 2 p.m. now and I want this story to end, but it keeps goingon and on. I'm getting very exhausted and I feel worse than I did
when I came in last night. I'm breathing better, but I'm feelingsicker somehow. My hands and legs ache especially badly, butreally I'm in pain all over. I think it's from the medicine they'regiving me. Another doctor came by around 12:30 and said that theother doctor had told him I was upset. He listened to my complaints and said I certainly had reason to be upset. I should havebeen told what medicine was being given to me. He thought I'd begoing home soon and he wanted to get a white blood count to see
if I had an infection. He looked into my eyes and at my tongue andlistened for a long time to my heart. Then he asked if! felt nauseousand I told him I didn't. He seemed very concerned. I'm sure he's
the staff P.R. person, the one they send in when they're afraid of ala wsui t. He's got that smoo th "I understand just w ha t you mean"kind of manner specially suited for disarming and defusing.
It's 2:45 now and the P.R. doctor just gave me the word that I
can leave. I'm relieved. I think one more hour of this and I'd bescreaming and tearing the place apart. My head is aching. Earlier
this afternoon I heard a nurse from another floor saying they had
just sprayed for ants on her ward and all the patients are complaining of headaches. On top of that the cleaning woman has just left
after mopping the floor around me with some foul smelling
disinfectant. Chemicals of any kind make my asthma worse. So
now my head aches and I'm starting to feel dizzy and wheeze
more than I had before she came.
It's 4:00 p.m. and I'm home now. As I was leaving I gave
Sharmina a little hug and told her, "Hey, let's get together sociallysometimes. I don' twant to have to keep meeting like this." She justlaughed. She's really not so bad. Kind of cute, in fact. I hope I never
have to see her again.
102

Emily Levy

The Swooner (the bedder)

Kissing fifteen minutes
I wrestle your shirt
your Brand New Third Date Shirt
until it lies in a heap
on my hardwood floor.
You call me Fast.
I'm not.
Only desperate
to get your shirt off.
This isn't passion choking me up:
it's formaldehyde.

103Naja Sorella

AI part of the Community

If

m a Lesbian sick and tired of being sick and tired. I'm a Lesbiansick and tired of being chronically ill while Lesbians put their
physical, emotional and financial energy into AIDS. Here in thedyke community immune system illnesses are knocking large
numbers of womyn on their butts, sometimes for life.
Environmental Illness (E.!.) (also known by dozens of othernames such as Chemical Hypersensitivity, Complex Allergy
Syndrome, etc.) and Chronic Fatigue Syndrome (also known as
Chronic Epstein-Barr Virus Syndrome, Chronic Viral Syndrome,etc.) have been sweeping through the Lesbian community forroughly the same amount of time AIDS has been hitting the gay
boys. While these illnesses are due to damaged immune systems
and can totally incapacitate for life, they rarely lead directly todeath. Death is what makes AIDS so popular a cause. AIDS is a
killer! It's striking people down in their prime! Such a tragedy
early death is, such a tragedy! People respond to this type ofdrama. Early death is a tragedy, but equally as tragic is a lifetimeof being too ill to rise out of bed. And both E.I. and Chronic
Fatigue can do this.
E.I.literally makes people allergic to the world, because damaged immune systems can't deal with the chemicals in everyday
products. All personal care products, car fumes, smoke of any
kind, carpets, synthetic clothes, all cleansers and laundry products as well as most foods head the list. Severely E.I. people can't
leave their homes and / or let others into them. Some even need tostrip their homes of everything but a few cooking utensils, a
porcelain bed with cotton blankets making up the mattress, a few
cotton clothes, and safe drinking water. They don't open theirwindows or doors as the air makes them seriously ill. Chronic
Fatigue symptoms can include cellular exhaustion, debilitating
weakness, neurological problems, muscle and joint pain, sorethroats, sore lymph glands, night sweats, headaches you wouldn't
believe, poor memory, lack of concentration and other thinking
problems, as well as severe depression. Damaged immune sys104

terns leave the body vulnerable, thus most of us also have othertypes of auto-immune and viral illnesses, such as candida andthyroiditis.
There are other immune system illnesses that are devastating
to Lesbians, such as lupus, M.S., arthritis, cancer. I've concentrated on E.!. and Chronic Fatigue as they tend to be disregarded
by both society at large and the dyke community as not "real"illnesses. Since we're not viewed as "really" ill, in turn we're notoffered the same support on all levels that people with "believable" illnesses receive.
Step one is to educate yourself. There are numerous articles,
newsletters and books on these illnesses. Listen to what we tell
you these illnesses are about and what we say we need aroundthem. Those with E.!. and Chronic Fatigue are often told it's "allin their heads" by doctors. We don't need to hear this from you as
well. Realize that both E.!. and Chronic Fatigue vary widely intheir effects and just because you've known a womon with theseillnesses doesn't mean you know what it' s like for the nextwomon.
One womon assured me I'd get well from Chronic Fatigue because her friend did after having it for a year and a half. Telling
her I've had it for six years, and that most of us who have it morethan two years don't recover, didn't move her from her conviction. Don't make assumptions about these illnesses, ask us what
we need,listen when we tell you!
Step two is to make your individual self and the dyke community accessible to us. And this takes work! We need dykes willingto change their personal care products to ones we can tolerate(called "safe" products) so that you can come into our homes as
friends, lovers, attendants, doctors, acupuncturists, etc. I know
many homebound womyn with no one willing to use safe products. I'm lucky, I have my E.!. dyke support group that meets at
my home, my lover and one friend who use safe products. When
you tell us you just can't give up your mousse or fabric softener or
you just have to have brand X for your face, you're telling us a
product is more important to you in your life than we are.
Smoke, perfume and other scented products (including chapstick and gum), carpets, cleaning products, animals, etc. keep us
from your homes and social events as surely as stairs would keepout a wheelchair-bound dyke. Realize that E.!. dykes are every105

where, some of us try to go all the places you go: the bank, grocery
store, doctor's office, library, concerts, the local dyke hang-out.
Your herbal scented oil, hand lotion, laundry soap or styling gel
may be making us sick. If we don't say anything, it doesn't mean
we aren't affected. It's difficult to constantly be confronting people
about their toxic products; those products have already made us
ill and many people react with hostility. If we do tell you, don't
deny our reality by saying you having "nothing" on. The natural
oil you used yesterday, your hair conditioner, or the liniment foryour pulled muscle may be the "nothing" causing headaches,nausea, muscle weakness, breathing difficulties or dozens ofother symptoms. We need you not to argue with us, we don't gotelling people they're making us sick because we have nothingelse to do with our time.
We get tired of doing all the work. If a womon indicates you'remaking her sick, ask if she needs you to move away, and how far.
If you're at her home, offer to shower with safe products. If you
smoke, be aware that smoke is highly toxic and more and more
people are becoming sensitive to it. Smoking in public keeps
those who can't tolerate smoke out of public places. If you dosmoke in public, be responsive to requests to put your cigarettepipe, cigar, out. Moving away from us doesn't help, smoke travels. Many E.L' s will react to the aura of smoke around you even ifyou' re not smoking in their presence. Showering or bathing withsafe products, putting on fresh clothes laundered in safe laundry
products and not smoking afterwards can make you safe formany E.L's .
If you are friends, in a group, or co-workers, ask what sheneeds in order to be around you. Offer to use safe products, wear
cotton clothes, put the cat out, vacuum before she comes, or whatever will make you, your group, the workplace, accessible. Confusion is one of the many brain reactions E.!. people have to toxins. If she isn't able to answer you right away, talk with her later.
Plan parties, workshops, conferences, events so they'll beaccessible - invite us and ask us how. All ads should state that
there will be no smoking, and request no scented products. Air
purifiers may help. Print a phone number for access informationon all ads - we may not try to come if we can't find out how
accessible an event is in advance.
106Think of creative ways for womyn to be part of your groupwhether they have these illnesses mildly or severely. A womonwith mild Chronic Fatigue may be able to attend a meeting but
may need to lie down, or have the meeting be short. Homeboundwomyn may need other alternatives: participating by mail or ontape, having womyn agree to make themselves safe to be in her
home, using speaker phone systems. Start asking around among
your own friends. 1'm sure you'll find disabled Lesbians needing
your kind of group, whatever it is.
Step three is: give us the same kind of support you give AIDS.
If you do grief work for AIDS patients, do it for us. We're incontinual pain over the loss of our bodies, our loss of functioning,
our isolation. If you donate time to an AIDS organization, at least
donate an equal amount of time to a dyke with an immune system
illness. We don't have caregiver groups set up to come in andwash our dishes, clean our houses, take us to the doctor, do ourlaundry, go shopping and fix meals. Not all of us are on SSI and /or have attendants. Those who have attendants are usually inneed of much more extra help. If you have a skill such as massage,
acupuncture, homeopathy, chiropractic, etc. and you're thinking
of donating it to AIDS patients, give it to a dyke instead. Sincemany of us are homebound, be willing to come to our homes. If
you give money to any types of AIDS organizations, give it to an
ill Lesbian instead. If you give activist time to AIDS politicalgroups or causes, give it to groups dealing with these immune
system illnesses that affect mainly womyn. You may even have tostart your own. These "women's illnesses" haven't seen any
influx of big bucks for support services or research.
Accessibility requests from womyn with other types of disabilities don't usually require personal changes from dykes.
Ramps, grab bars, ASL, braille, don't require womyn to makechanges in their personal habits. The changes we ask for are notoptions for us any more than ramps are options for womyn inwheelchairs. Lesbians with E.I. and Chronic Fatigue often end up
totally isolated, viewed as either "crazy," or controlling andmanipulative. These illnesses are seen as too much of a problem,
we ask for too much, we're too much hassle.We ask for changes
for the same reason womyn in chairs or deaf or blind womyn ask
for changes: so that we can all be part of the community.
107She maya Mountain Laurel

from On Becoming A Thin Woman

I used to be a fat dyke, quite content with the situation. Now myimmune system fusses at food, my back fights cooking, and all in
all the results of eating are often more uncomfortable than hunger. This has been going on for quite some time, and the effects
become gradually more apparent. Though it's not as bad as it
could be; I shudder to think where I'd be now if I' d started off thin .
... Twenty-five years of being fat informs my life, and thinness
is not corning easily. For one who prayed for anorexia, it is highirony that now, twelve years later, I am upset at becoming thin.
I remember, in the time when I was almost but not quite finishedwith dieting, feeling heretical at my touches of sadness at the lossof my body. A neighbor, as a form of the familiar diet congratulations, exclaimed, "There's so much less of you!" The thoughtstayed with me, that part of the essential "me" was being lost.
Now, I read speculation that "mind" is not located in the brain.
Rather, it is all through our bodies, intimately connected witheach cell. The source of ''body memory," whether incest or a long
unpracticed song on the guitar, still "remembered," if one canonly relax and let it play itself. And I wonder: where does thatleave the person who loses a part of her body? Whether throughaccident, surgery, or an overall diminishing of flesh? Is part of thewrenching pain a sense of the loss of "mind," along with part of
one's physical self?
.. .I've become known for being touchy. People "compliment"
my loss of weight, I say "illness, was happy how I was," etc. andshow varying degrees of aggravation at their implicit statement
about what they thought I looked like before .
. . .Increased sexual messages from dykes who knew me before
are insulting. It' s interesting information to have, but I'll stay withthe womyn who appreciate my attractiveness in ALL its forms .
...The hardest part in this is the shift in how fat women relate
to me. Particularly those who've only known me thin, and especially those I meet only for a moment, or pass on the street. I
108

understand this, but am saddened by my shift in group. My
attraction to fat womyn hasn't changed, and the loss of so muchof my body is made sadder by the loss of being able to share it as
fat womon to fat womon. I do mental work around perceiving theattractiveness of thin womyn, not wanting to rule out attraction
because of having a hard time with pointy bones. I prefer roundlovers, but don't want to be ruled by that ...
There is a solid, centered love of this changed body that I have
yet to find; the key is most likely deeper than the fat/thin issue.
Thinness is not the major change; it's only the most easily visible.
The disabilities that are bringing it about are the real culprits, andmy insides are screaming betrayal. If this body will no longer
function, and its thinness is one of the marks, how can I love either
one? I am trying to learn ... . But it's a slow process, this loving a
new self. First come the introductions; I think I'm still at thatstage.

Max Hammond Dashu
109

Amy Edgington

Boogeywoman

You would think the humpand hairy chin would be enough,but the scorn of othershas marked my face
like acid.
Warts thrive among my moles;
rheumatism gnarls my limbs.
Each time I lift my downcast
eyes, somebody cries foul.
I am the one who eats bad girls,
the one who drinks their monthly blood.
You were warned, someday
I'd come for you,
if you didn't mend your wicked ways.
Stay home at night. Obey the rules.
And whatever else you do,
don't go into the woods alone,
lest you mistake me for a twisted oak
and fall asleep between my knees,
after circling for hours.
At dawn you'd wake in my arms, enspelled,
and suddenly find me
lovely.

110

Denise Sherer Jacobson

American BandstandI hated nice weather. My mother would make me sit on the stone
stoop of our brown apartment building after the school bus
dropped me off, while she gossiped with the neighbors. She said
it would do me good to get a little sun - 1was so pale and skinny.
"But Ma," 1 whined, "I want to go up and watch 'American
Bandstand.'""It will still be on by the time we go up. Look, your sister will
be home from school in a few minutes and I'll send her to the
candy store to get you a chocolate malted." My mother was notabove bribery.
So 1 sat listening to the droning voices being carried into the
air as the women talked about the fruit in season at the grocer orthe sale on bathing suits at Alexander's. I cooed at the babies
awake in their strollers and felt pleased with myself that I could
make them smile and laugh - they weren't old enough to know
I was different. And I watched as the kids walked past in drovesas they were let out of neighborhood schools, the younger ones
who would stare at me as their mothers ushered them on and theolder ones who'd try not to notice me at all. I tried to ignore it all.
I would reach over to my navy blue and red plastic bookbag
sitting next to me on the steps and pull out a book, usually aNancy Drew or, if my book report was due soon, one of theclassics - a Mark Twain or Louisa May Alcott. Reading had its
purposes - keeping me occupied and, by burying my nose in abook, I thought I could forget that Leslie Strom was on her way
and I wouldn't have to see her snub me. Only it never worked. I
could always hear her coming - step-clump, step-clump, on theconcrete sidewalk - even above the kids' screechy voices and theheavy car traffic of the Grand Concourse. Step-clump.
"There goes Gimpy again," I grumbled one day to Shelley,
not loud enough for Mommy to hear.
"You know her?" My sister was surprised.
"We ride together in the same van to the Carolians' on Saturdays. Yech." I felt much the same about the Carolian Club as I did
111

about the sun, but my mother insisted it was good for me to go.
Yet if I had to choose between the two, I'd rather fry in the sun.
"She never speaks to me in the van, either."My sister offered compassion: "Hey, maybe one day, I'll run
upstairs and throw a bucket of water out the window when she
passes by."I chuckled. Shelley could think such wicked thoughts. I
wished one day she'd really have the guts to do it. I could justimagine Leslie caught in the cascade - her carefully combed flip
flopping, while water dripped from her stringy bangs and down
her upturned nose. It would serve her right - that polio gimp.
I didn't like her snubbing me, but I understood it. I was justletting my jealousy get the best of me. Oh, I wasn't jealous of her
because she only walked with one leg brace while I walked with
crutches and double-leg braces connected by a pelvic band although my braces weighed about three times as much as hers.
They only really bothered me when the weather was hot and theleather bands holding my legs in place stuck to my skin, or when,
as a growing eleven year old, I would outgrow them every fourto six months - the pelvic band would press into my hips andirritate the thin skin covering my pelvic bone until the readjustment could be made. Yet, besides holding up my knee socks, mybraces gave me a steadiness, a feeling of security and brief
moments of pleasure, feeling such heavenly relief and freedom
when I took them off at night. No, it wasn't her brace or ability towalk better . . .
It wasn't that she was able to go to a neighborhood school,
either. I got more attention in the special unit I was bussed toeveryday than I would have in a regular classroom. All myteachers (of which I only had three since kindergarten) were very
impressed with me, and why not? I was smarter and cuter thanthe other handicapped kids; in the sixth grade, I was reading at ahigh school level, and I was still blond and had a small nose. My
mother always made sure I sparkled when I went to school in themorning (not that I'd come home the same way) - a little doll,
they called me, since I was small and fragile-looking; they evenremarked that when I sat still at my desk, you couldn't tell there
was anything wrong with me. So what if the other kids at school
didn't like me - the ones my age teased me because I was
112teacher's pet, and the kids in my class - teenagers - didn't want
a little squirt hanging around. No matter, adults were more
important than those snotty kids; they appreciated me. If I went
to a neighborhood school like Leslie, I'd just get lost in the crowd .
No, what really bothered me about Leslie was that she was
acceptable - her, and the clique she hung out with on Saturdays.
True, the girls were a little older - twelve or thirteen - but thefact of the matter was, older or younger, they could all dowhatever they wanted to. They'd get permission to leave theclubhouse and hang out at the corner hamburger joint. They'd get
the leads in every drama group production. And none of the staff
ever "found" them when they hid under a stairwell smoking
cigarets. They were doing just what was expected of them,because they only had polio -- a mere inconvenience that surely
didn't stop any of them from being average kids. After all, they
didn't have to just sit still at their desks to look like there wasnothing wrong with them - just sitting down ANYWHERE
would do.
The polios - they were always at the top of the ladder, while
I was on the bottom rung, because I had cerebral palsy (c.p .). The
I.Q. tests didn't matter; any movements in your body that you
couldn't control, speech that was slurred or slow, placed you on
the bottom. No matter how I tried to climb up that ladder I still
had the wrong disability. I hobbled too slowly to go with them tothe candy store - even if they wanted me to, which, of course,
they didn't. I'd lip a cigaret if I took a drag, since my mouth
always seemed to have an excess of saliva which escaped down
my chin if I didn't remember to swallow. And then there wasdrama .. .
Drama was the one activity I wanted so desperately to be in.
I knew I'd be good; I was such a natural - I could have a smileon my face even when I was miserable, make people laugh withmy "wonderful sense of humor,'! poking fun at myself before
others got the chance: "I walk so slow even the Tortoise could beatme in a race." I was a great actress - alone in my room - playingout romantic scenarios: princesses, captured by tyrants, rescuedby handsome princes. I told myself my speech impairment didn't
matter; when people really listened, it wasn't hard to understandme (my speech therapist even said so): if I were up there on stage,
113

my audience would have nothing else to do but listen.
Still, I wouldn't dare try out for a part. I could just hear what
would be said about me: "She's making a fool out of herself, justlike the rest of them." Then the head of the Carolians would getwind of it and note in my file: "The child is immature and has an
unrealistic view of her limitations. She does not accept her
handicap." Inevitably, the comment would appear on my school,
medical and camp records and I would be lumped together withall the other c.p.'s. I couldn't let that happen. So, I proved that I
was not only smart, but knew my place, too - I joined the clubnewspaper.
My mother's voice took me out of my silent lament: "Shelley,
I want you to go get Neisie a malted.""Aw, Ma, send one of the other kids, send Nancy, she's justhanging around," protested my chubby sister, slapping her books
down on the stone stoop. "I told Harriet I'd meet her at herhouse."
It was always Harriet, or Alice, or Barbara. It was only me asa last resort - on weekend mornings when no one else wasaround. I knew she'd rather play with kids her own age but I wasonly two years and nine months younger and, I thought, a lot
nicer than any of her friends - they were always so snotty.
They'd only let me play with them on rainy days when theirmothers gathered in our apartment to play mah-jongg.
The kids would go off into my parents' bedroom after the
women chased them away for pestering them at the game. My
mother, like the others, would be so glad to not have thembreathing down her neck that she'd give the kids permission to do
anything - play with make-up? "okay"; wear old dresses andhigh heels? "alright"; jewelry? "only costume"; and she'd callafter them, "Let Neisie play."
On all fours - my way of getting around without my braces(a wheelchair was unheard of; my mother was afraid I'd startdepending on it too much) - I'd half hop, half creep into the
bedroom. They would be all dressed up in pinks and blues, fakepearls and rhinestones.
"Here," one of them would say, throwing the ugliest dark,
ragged housedress over me. "You can be the wicked witch or theevil stepmother."114

"Can't I be the fairy godmother?" I asked, already blinking
back stinging tears.
"Nancy's the fairy godmother.""You always let her be that," I pouted . They were always nicer
to Nancy. Not that they really wanted to be - they were justscared of her mother: Pearlie could intimidate them with just one
look. 'Why am I always the evil stepmother?""Because we said so ... And if you don't like it, you won't
play," came the final ultimatum.
It was no use looking to my sister for help; she stayed silent.
I knew if I cried to my mother, she'd yell at Shelley, who would
take it out on me. Besides, my mother was no Pearlie when it came
to discipline; she'd just end up trying to make me understand,"Neisie, kids are cruel."
So, I played the evil stepmother, ordering them to mop thefloors and wash the dishes. They, of course, ran away, clunking
off in oversized high heels. I followed after them, trying not to get
my knees black-and-blue thudding them down too hard on the
bedroom's linoleum floor, or get splinters in my hands as I crept
over the wooden hump of the doorway, or get rug burns from
creeping on the living room carpet.
I couldn't keep up with them; my legs kept getting caught inthe stupid old housedress. Soon, a familiar muscle in the back of
my neck would go into one quick spasm, in protest of all mytensely driving motion. The cramp jerked my head back, lasting
no more than a second or two, but the pain was so deep that it sent
hot shivers up to my head and down my spine. No one waspaying attention to notice, so I would just sit there until the funny
tingling went away. All that remained was my headache, which
had really started before the chase. I'd have to ask my mother for
aspirin and then go lie down. Dress-up time was over anyway;
the kids were playing 45's.
I had just slurped down the last of the malted that Nancy had
volunteered to get for me because Shelley had gone off to Harriet's . Looking up at my mother's heavyset frame leaning against
the stoop, I called until she heard me. "Ma? Ma?"
"What, Neisie?" Her head turned downward, but I couldn't
see her face - the sun was in my eyes. "You're drooling, honey.
You have to remember to swallow. You know what I always tell
you?"
115

"Yes, Ma." I recited with boredom: "When someone says I'mcute and takes my chin in their hand and feels that it's all wet,they'll go 'blech!'" I made a horrible face.
"Right. And they won't want to do it anymore." She turned
away for a moment to hear what a neighbor was saying.
"Good," I mumbled to myself, "let 'em keep their hands tothemselves." Still, I wiped my chin on the sleeve of my furry, redjacket before my mother saw me. Otherwise, she'd scold me,saying that the saliva would ruin the fur. I always did it, anyhow,
when no one was looking - too lazy to pull out the hankie frommy pocket. I finished seconds before she looked back at me. She
waited while I swallowed.
"Ma, can we go up now?"
She clucked her tongue in mild exasperation. "Well, I guess I
ought to start making supper soon, so we can eat before Daddy
gets home. Just let me have one more cigaret.""But Ma, I'll miss Record Review." They sometimes had it in
the first half hour of "Bandstand.""Neisie, be patient," my mother mildly admonished. ''We'regoing soon." I threw my book back into my bookbag, snapped it
shut and waited. It took her forever to finish.
Putting the butt out on the stone stoop and throwing it out
into the gutter (for the street cleaners to sweep up in the morning),
she gathered my aluminum crutches, my bookbag, her purse. She
held it all with her right arm and hand, leaving her other limb free.
I offered my right wrist, which her free hand grasped. She pulled
me to my feet; it always took me a few seconds to stop wobbling.
Then, using her body to steady her arm as she held me, we started
the climb - 22 stone steps on the outside, 20 marble steps to go
once inside the hallway. By the time we were on the fourteenth or
fifteenth marble step, the back of my legs would ache from thestrain of carrying not only my own weight and the weight of mybraces, but with the anticipation that in a few more steps, thegrueling climb would be over.
Afraid that if I sat down on the kitchen chair, I'd be too wipedout to get up, I remained standing against the threshold of the
kitchen and reached for my crutches propped against a nearby
wall. Still catching my breath, I positioned the worn rubber armrests under my armpits and placed my hands tightly around the116wooden handles. I hobbled my way through the long foyer to theliving room (always filled with the musty film of cigaret smoke)and into the rectangular, blue-walled bedroom that I shared withmy sister.
Immediately, I went to the television corner to switch on
channel 7 - "American Bandstand" - to be with Peggy andJustine and Bob and Tony and all my other friends. It didn't
matter that I wasn't fourteen; I was mature for my age. I didn't
even play with dolls - I couldn't dress them with all theirbuttons, buckles and bows.
While the TV warmed up, I leaned my crutches alongside thewindow and plopped down on the bed. A Clearasil commercial
was on followed by station identification giving me just enoughtime to rest and wipe the sweat from my forehead. Then I stoodup and, holding on to whatever was steady in between, inched
my way over to the closet. Grasping the doorknob, I was ready forthe next cha-cha to Frankie Avalon's ''Venus,'' or Lindy hop to
Connie Francis' "Lipstick On Your Collar." I thought I wasn't that
bad, either - keeping time with the one-two but leaving the chacha-cha (or else I'd lose the beat) and, of course, I didn't swirl
around too much during the Lindy. I sat out the slow dances,since there was no shoulder to lean on; instead, I'd sing along with
the Platters' "Smoke Gets In Your Eyes" - I could keep up withmost of the words - and was proud that I was able to carry a tune.
What a relief!! No one stared. No one teased. No one disapproved - at least for the rest of the hour.

117Barbara Ruth

Breakup

You say you're tired of dealing with me
Tired of dealing
With these physical crises
I keep having
Over and overWith the way I never recoverCompletely
With the effect that has
On my personality
You say
You're gonna leave me
Go off and start again
With some other girlWell, shit
That sounds pretty good to me 1'd like to try it, too.
I wanna break up with my disability.
Get a divorce
Sever our relationship.
I wanna move out
Close that door behind me
Take up with some new girl
A sweet girlWho knows how to have some fun
One who treats me good
One who won't complain about her aches and pains.
Yeah, I understand the impulse to break up
And I envy you
Your options.

Reprinted from Past, Present & Future Passions - Poems by Barbara Ruth, 1986,
W.A.T.R.

118

Caryatis Cardea

Snapshots of a Decade and MoreIn

a discarded poem, I described it as the morning inventory /silent and internal. What hurts and how much. More important,
how bad is the head?

***
The first few days in the hospital, I knew very little except that myroommates rotated constantly. They were there because they
were expected to die and did. I was there for the same reason, but
I didn't. In the emergency room, my face was stitched, layer afterlayer, without anesthetic while the attendants spoke about me in
the third person.

***
When they brought in the x-rays, four hours after my arrival, myfriend was allowed to come in. The doctors showed us the flattened marshmallow image which represented one of my vertebrae, now only 1/ 5 its ordinary size. In the reflection of the overhead lamp, I saw my friend slide off the stool and disappear fromview, having fainted and fallen under the curtain into the next cubicle where a working physician hollered for assistance in removing the inert form suddenly at his feet. It was the day's comic relief.

***
They moved me to another room and permitted visitors. My
parents came in. I was still being asked if I knew my name and theyear, and it became clear to me that they were surprised that I
continued to supply the correct answers. I realized that my mind
might not live even if I did.

***
For the first time in my life - probably because I believed it to be
the last - I asked my mother for a hug. She said her back hurt andto ask my father.

***
The hardest part today is the unpredictability. On no day can I
know for certain that I will be able to function the next day. The
mobility impairments, when they occur, are not as severe as many119

other disabled people experience. The wearing reality is that theymight be there and they might not. Since it takes more planning toprepare for their presence than for their absence, it is the former
which dominates my consciousness.

***
The accident was a fluke, even as motorcycle mishaps go. Anotherfluke was my being insured - a result of a part-time job I held atnight, and some car insurance. Both policies allowed for double
payment, which meant I could have the means of survival for atime. A friend asked me if I was really going to collect on both;
didn't I know that that sort of thing drove up all of our insurance
rates?

***
Surgery was not required. No bone fragments had gone into thesurrounding muscle; the vertebrae had been crushed inward,
toward the spinal cord. My condition simply necessitated that I
stay flat on my back until the bone set itself. It was only a few
weeks. My face was bandaged and my right arm in a cast. After therequisite waiting period, the orthopedist had me fitted for a bodybrace, shoulders to hips. No nurse stayed in the room when thesalesman brought the device. He assaulted me.

***
My mother reluctantly offered to let me recuperate at my parents'
home. I was not so foolhardy, however, as to enter that realm of
violence in my newly fragile state.

***
After my release, I stayed with one friend or another for someweeks. I couldn't be alone just yet because I had to be rolled into
the brace each morning and could not rise, turn over or sit up
without it. The numerous straps and buckles were more than I
could manage with my favored hand still in plaster. For the firsttime in my life, I had to depend on others. To learn to ask for help.

***
I learned, but I never learned not to hate it.

***
And then there was the second accident.

***
120

A fluke more absurd than the first. No point in going into details.
Within a few hours, my head began to hurt abominably and I had
uncontrollable nausea. My eyesight and mental focus were impaired, my head felt like it was in a vise. Years later, someone
finally diagnosed this pain, which never subsided for long, as
migraine.

***
All healing progress halted. Large doses of medicine were administered to keep me from banging my head on door frames,from pulling out my hair.

***
Depression set in in earnest when winter came and I still had noroof and no money, despite some babysitting and stuffing ofenvelopes. I had myoId sleeping bag and a heavy quilt in the van,but the dense fog and dampness of the L.A. rainy season and the
low nighttime temperatures were hard on my body. A friend
loaned me an old space heater and let an extension cord out awindow. I parked in the driveway instead of the street and hadenough heat to prevent illness from exposure.

***
I had been in school at a junior college when I was hurt andsomeone suggested I return and take a class just to get my mind on
something.

***
I applied for MediCal and sat in the waiting room on a hard plastic
chair for so long that the pain increased past that dreaded point
where it interferes with the consciousness necessary to deal with
it. And then consciousness departed altogether. When I came to,
I asked what was taking so long and learned that they couldn't
find my application, which had fallen behind a file cabinet. This is
typical of my luck with bureaucracy.

***
My mother queried at frequent intervals whether I had noticed
how my life had been going downhill ever since I had let her knowthat I didn't believe in god. She also felt that I ought to stoppretending to atheism because she had heard me say oh-god
many times. One day, in frustration, I remarked that when angry
121

I was also known to say oh-shit but it didn't mean that I believed
it had created the world. She wasn't amused but my brothers
cracked up.

***
When my siblings visited me in the hospital, where I had to return
periodically for tests and physical therapy, they formed a considerable and raucous crowd. One of the nicer nurses asked me
confidentially if I would like her to limit the number of people in
my room at one time. I felt at home, though, when three or four ofthem would arrive during one session, unaware that the others
would be there. We always seem to do best when we aren't
expecting each other.

***Once up and around, I was to walk short distances regularly witha cane for support. It eased the difficulty in maintaining mybalance, caught me when my legs buckled, and gave me something to lean on to ease my breathing. Often, acquaintances passed
me by as though I were a stranger. They never noticed my face; I
was just a person with a cane and they didn't know any of those.
At least it worked to my advantage once, when an abusive former
lover failed to recognize me.

***
The feds turned me down. The judge said I if I could earn a good
grade in school, I could work. He also said the capacity to actually
support oneself was not the issue; he only had to determine that I
could hold a job. If it were shown, he said, that there existed a job
as night watchman in a graveyard in Kentucky, with a shack inwhich I could lie down as much as I wanted, this constituted proof
that I could be employed.

***
Turns out they aren't allowed to turn you down for being a
student but the appeal was denied anyway. They can't turn you
down for being able to hold some hypothetical job in another partof the country, either. The appeal was still denied. I got an advocate who had never failed to obtain disability payments for aclient, and lost again. I was two years older and no better. I gave up
and settled into the conviction that if I tried hard enough I would
get well.
122

Trying hard consisted mostly of staunchly maintaining a pretensethat my condition was temporary and if no one treated me asdisabled, especially by providing accommodation, then I wasn't
disabled. A glance through my journal at the time reveals arenewed commitment to this philosophy every few months as I
set, then failed to meet, one deadline after another for "getting
well."***
I had been feeling quite sorry for myself in the hospital one day.
The doctor's report included information about the residual spinal deformity which would leave me an inch shorter and the facial
scar which was hidden at the time behind an enormous bandage
and had my undivided attention that day. I was weeping rather
thoroughly when my visitors arrived. I explained why and myfather, looking at me lying flat on my back, offered sympathetically that I didn't look any shorter to him.

***
I moved to Berkeley two years after the accidents. I moved all my
own things, left my cane in Los Angeles, and told no one in my new
home that I was disabled. I made new lesbian friends. I started
school and got a part-time job.

***
The plan was an enormous success at first. Then, increasingly
fatigued and unable to breathe, I passed out first in the campus
bookstore and later in a laundromat. I would go places and returnhome having no idea what had occurred while I was out. On theafternoon of my oral presentation in a seminar, I realized half-way
home that I had no recollection of the afternoon. (I still don't.)***
Walking home during a bus strike, I stopped for a red light; itchanged, I had every intention of stepping forward, but nothing
happened. It was one or two changes of the signal before I could
move, while leaning on my umbrella, which must have looked
peculiar since it was pouring. Still, it was four years before I
surrendered to the cane again. The longer I went without using it,
the more frightened I felt about appearing phony by suddenly
adopting it again.

***
123

I know some dykes who embrace the qualities of their disabilities
on their own merits, or as a set of attributes akin to those acquired
as a member of other oppressed groups. Disability culture exists
but! can't live there. It would be a lie to say that I would not change
my situation even if I could. Tomorrow the world could remove
all barriers from the path of disabled people. The difference in mylife would be negligible.

***
I live within the sound of constant screaming. Every cell of mybody carries on a high-pitched, nerve-shattering cry all day andnight. Some mornings the pain is so enormous my body cannot
contain it and it looms in lowering clouds somewhere just outsideof me. I awake in the eye of the hurricane, disoriented by thefeeling of a surrounding pressure which is frightening but not
immediately identifiable. It takes the extreme of concentration torecognize that I am, quite literally, in pain.

***
The sunshade on my helmet is the only reason I have a face today;
also the only likely reason I am alive. I had sailed over the handlebars of the bike and cruised face first into a stone wall. I lost somememories of the past and some ability to remember in the future.
For months, my vocabulary drifted and merged in and out of
categories. When especially tired, I would lose all of my adverbs,
or all of my abstract nouns. I would build a sentence toward aparticular word and arrive at it able to grasp only that it started
with a t and had three syllables.

***
The nightmares vanish for as much as a few years at a time, until
I nearly forget their existence. Then they return without warning,shooting me screaming out of sleep several times a night, crying
and streaming sweat.

***
One of my few clear memories of the accident is the smell ofleaking gasoline. I had beaten the bike to the ground; it fell on me
and fractured my wrist, dripping gas everywhere. Now I hate selfservice stations with a vengeance for the smell I can't get off myhands afterwards. Although I dread running out of gas, I seldom
refill until it is absolutely necessary.
124

***
Berkeley, for me, presented a new range of disability experiences.
I was assailed in public when seen taking medicine, even aspirin.
Offers of rosemary tea and the names of reflexologists abounded.
It might have seemed a kindness ifnotforthe inherent plea that we
disabled lesbians halt our traitorous associations with western
medicine.

***
Migraine of the magnitude I experience should not rightly becalled headache. There is no correlation between it and the pain
commonly experienced by nondisabled people. It is a totality of
suffering which is incidentally located in the head. My body naturally braces against the torment, starting immobilizing muscle
spasms along my spine. The nausea has a way of tearing open
things in my low back until I cannot walk or hold myself upright.

***
On occasion, I must be taken to the emergency room for pain relief.
The average wait for treatment is 3 to 4 hours. I have seen themtreat minor rashes before they will a ttend to me. After all, it is only
a headache.

***
In the throes of migraine, my being is centered on surviving it.
Each time it abates, I calmly renew my plans to die - those plans
which I have been formulating at the end of each migraine since I
recognized their permanence in my life - because in the hours ofrecovery I know that I cannot want to continue with the certaintyof that agony repeating regularly in my future.

***
I go to school part-time now, I take walks, go camping and on car
trips. A few times a year, I grit my teeth and indulge in rock 'n' roll
dancing - a lifelong, and formerly weekly, pleasure I will retain
at any cost. I read, write, and play the piano. I have a life like mostfolks.

***
My life, though, is built around the edges of a fortress which I
guard against the work, the smoke and scents, the foods andanimals and lighting which can trigger migraines. I still join125political groups and try to spend the requisite number of hours
sitting without taking notice of the sciatica setting my right leg onfire, the herniated disk tearing at my low back, the iron-likemuscles spasming along my spine, compressing my lungs, or of
the oxygen which has left my inert bloodstream almost entirely.

***
To say nothing of the random "hot spots," places on my back andarms which suddenly feel as though they'd been touched by a hotiron. Or the electric-shock-like feelings that pepper my rib cage attimes. Or the unexplained allergies which multiply as time goesby, from foods to office supplies to perfumes to fluorescent lights.
Or the way my body fails to heal any new injuries: the finger,
jammed on a basketball two years ago, which still won't bend
fully; the twisted ankle which remains weak; the wrist whichached after writing through a stack of carbons and was found tohave developed a form of carpal-tunnel syndrome.

***
Poverty is largely responsible for the degree of my disability
today. Had I been able to recuperate even that first year indoors, I
might have escaped much of the chronic pain I suffer today. Had
I had health insurance or an affluent family, I might have obtained
the physical therapy and medical care which could have facilitated healing.

***Three-quarters of my life was slashed away in the form of 3/4 ofeach day. It is not that I will live a shorter time in this life. It is that
I live a much shorter time in each day. Awareness of the deprivation is renewed each morning. I am tired.

***
I'd like to have an end to the morality tales about everyone' s friend- it must be the same lesbian - who healed herself of devastating
systemic illness and structural disability through self-hypnosis or
the wearing of crystals. I believe in such things, I just don't want to
be badgered with them, or judged against someone else's legendary success.

***N or do I want to hear the ubiquitous miracle vitamin cure used as126

a handy response from the a-b who doesn't know how to talk to acrip. As in, Oh, you're disabled and in mind-deadening pain every
day? Have you tried taking calcium? It works for me after crosscountry skiing. I don't want to be asked what was going on for methat year that I allowed something so traumatic to happen, oroffered the empathy of able-bodied dykes who "have a bad back,
too," and tend to abscond with whatever seating accommodations are available.

***
Also, I don't want to be regaled with lesbians' fantasies that "painis pleasure." Pain is what disables me, sets the limits of my life,
constricts my body and mind, waking and sleeping. I am deeply
offended by jokes proclaiming that the misery of my life is something fun, sexy, erotic to those with the privilege to pick it up andlay it down at will. I am not amused.

***
And I don't want your pity. Much of the silence of the disabledsprings from the near-impossibility of being treated with dignity
once able-bodied others know ofthe indignities imposed upon us
by or because of our disabilities. But knowledge is not a thing to befeared. Lesbians should be known to one another, the complexionof the present tinged by the events of the past, with no one treatedas a figure of tragedy. Adversity in the past - or the presentmay constitute a wound a lesbian seldom wishes to touch; but sheshould not be regarded as a wound with which others in thecommunity must avoid coming into contact.

***
The tacit understanding seems to be that if a lesbian has neverbeen told a story like this one - or any of the thousands which arethousands of times harder to survive and tell- nor encountereda dyke who behaves in the stereo typically doleful manner commonly assigned to those who've survived grave illness or injury,
then she knows no lesbians with troubled lives. Untrue, untrue.
Ask around.

127

Resources of Interest to Lesbians with Disabilities

Anthologies

Undiminished - Elaine Belkind, Beverly Slapin, Thomas Michael
Fisher, eds . 1987.
Disabled Calligraphy-CherylMarie Wade, Slapin & Belkind, eds.
1988.
Close to the Truth - Cheryl Marie Wade, ed., 1989, available withcomb binders & large print or audio cassette. All published by &available from: KIDS Project, 1720 Oregon St., Berkeley, CA
94703.
With the Power of Each Breath - A Disabled Women's Anthology Susan Browne, Debra Connors, Nand Stern, eds., 1985, Cleis
Press, PO Box 8933, Pittsburgh, PA 15221.
With Wings - An Anthology of Literature by and about Women with
Disabilities - Marsha Saxton & Florence Howe, eds . The Feminist
Press, 1987.
Books

No Apologies - a Guide to Living with a Disability - Florence
Weiner, St. Martin's Press, 1986.
No More Stares - developed by Ann Cupolo Carrillo, Katherine
Corbett, Victoria Lewis, Disability Rights Education and Defense
Fund, Inc., 2032 San Pablo Ave., Berkeley, CA 94702 (available ontape from them). Interviews and testimony from disabled women.
Good, detailed resource guide included.
The Source Book for the Disabled - Glorya Hale, ed., Paddington
Press, 1979.
Why Can't Sharon Kowalski Come Home? - Karen Thompson &Julie Andrzejewski, Spinsters/ Aunt Lute, 1988 (esp. useful for
power of attorney forms in appendix) .
Disabled, Female and Proud!: Stories of Ten Women with Disabilities- Harilyn Rousso, Susan Gushee O'Malley, Mary Severance.
Published and available from: Exceptional Parents Press, 605
Commonwealth Avenue, Boston, MA 02214, 617-536-8961 .
128Books Without Bias: A Guide to Evaluating Children's Literature for
Handicapism - Beverly Slapin.
"Women with Disabilities" - reprinted from off our backs: awomen's news journal, vol XI, no . 5, May 1981. Special issue on
women and disability, available from: off our backs, 1724-20th St.
NW, Washington, DC 20009.
herb woman, poetry and art by zana, includes many poems on
disability. 12150 w. calle seneca, tucson, az 85743.
Periodicals

Broomstick - by, for & about women over 40 (frequent articles
about disability, printed on paper & ink more accessible forenvironmentally ill than most): 3543 18th St, #3, San Francisco,CA9411O. Bimonthly- $15/ indiv, $25 instit (free to women over
40 in prison) sliding scale available.
Disability Rag - (by & for mixed audience, ongoing discussion of
disability politics and culture): Box 6453, Syracuse, NY 13217.
Quarterly, $9 individual, $15 institution.
Kaleidoscope - the international literary and fine arts magazine
for women with disabilities: 326 Locust St., Akron, OH 44302.
Women with Disabilities United Newsletter - International Coalition Building, POB 323, Stuyvesant Station, NY, NY 10009.
Healthsharing: A Canadian Women's Health Quarterly (provides a
critical analysis of women's health issues from a feminist perspective), 101 Niagara St. #200 A, Toronto, Ontario, Canada M5V
lC3. Quarterly, $11/ indiv., $19 org. and groups.
Hikane: The Capable Woman - a disabled wimmin's newsletter for
lesbians and our wimmin friends, POB C9, Hillsdale NY 12529.
Quarterly, $14 indiv., $19 instit. (free to women in prison), sliding
scale available.
Mainstream: Magazine for the Able-Disabled - POB 2781 , Escondido, CA 92025. 10 issues / yr, $14.97 indiv.
Environ - A magazine for Ecologic Living, Box 2204 , Ft. Collins,
CO 80522. Quarterly, $15/ yr.
The Wary Canary - A News' Network for "Sensitive Birds,"
Allergics & Environmental Health Advocates, PO Box 2204, Ft.
Collins, CO 80522. Quarterly, $20/ yr.
129

Disabled Women' s Network Canada (D AWN) (special issue of Thriving), 776 E. Georgia St., Vancouver, British Columbia, Canada
V6A2A3.
Hot Flash - Newsletter for Midlife & Older Women (regularly
contains information about cancer & other disabilities), The
National Action Forum, c/o Dr. Jane Porcino, Box 816, Stony
Brook, NY 11790-0609. Quarterly, $25/indiv., $50 org. (inquire
for lower rates).
HERS Newsletter - Hysterectomy Educational Resources & Services, 422 Bryn Mawr Ave., Bala Cynwyd, PA 19004. Quarterly,$20/yr.
Women's Tapeover Quarterly: A Digest of the Feminist Press on
Tape, 66 Oakfield Road, London, N4 4LB, England.
MediSense Publishing- Information on Estrogen Therapy, Fibroid Tumors of the Uterus, Breast Cancer Treatment, Osteoporosis, PO Box 12338, Birmingham, MI 48012-2338, 313-645-1540.
$15 / report ($2 post).
Dykes, Disability & Stuff - print, cassette, Braille, PO Box 6194,
Boston, MA 02114. Quarterly, $8-20/ indiv., $25/ organizational,
institution.
The Reactor - A Newsletter for the Environmentally Sensitive,
Box 575, Corte Madera, CA 94925. Bimonthly, $20/ basic, $10/
fixed income, disability.
Womyn's Braille Press Newsletter - print, Braille, cassette, PO Box
8475, Minneapolis, MN 55408, 612-872-4352, 612-822-0549 . Quarterly, $10-25, depending on income. They also tape lesbian andfeminist books and sell "Please Ignore Me, 1'm On Duty" signs for
guide dog harnesses.
Maize - issue on disability. Write PO box 791, Placitas, NM
87043.
Disabled Lesbian's Land
E.I.D.E.R.- Environmentally III Dykes Retreat, womyn only, E.I.
safe, open to visitors & new members, wheelchair access inprocess, sign language spoken, information on tape and in print(send SASE): EIDER c/ o Shemaya Mountain Laurel, PO Box 213,
Kenab, UT 84741.
130

Arts Organizations
WryCrips Disabled Women's Theater Arts, SF Bay Area groupfirst company in the US whose entire membership (writers,
actors, directors, production staff and crew) are disabled women.
Wry Crips is committed to inclusion, empowerment and education. The work of many Wry Crips writers is included in this andprevious issues of Sinister Wisdom . 1613 5th St, Berkeley CA
94710. 415-525-7960 (V / TDD).
Let's Get Together: clearing-house for disabled/ human/ civilrights creative products. Elaine Kolb, PO Box 5294, Atlanta, GA
94710. 404-688-5828.
Disabled Artists Network - sponsors many thematic shows
highlighting women visual artists. PO Box 20781, New York, NY
10025.
Organiza tions
Disabled and Incurably III for Alternatives to Animal Research,1733 Grant St. Apt F, Berkeley, CA 94703.
The Project of Women and Disability - sponsored by the Boston
Women's Health Book Collective, 617-722-7440, 800-322-2020(both V / TDD).
Women's Cancer Resource Center - PO Box 11235, Oakland, CA
94611 .
Empire Rainbow Alliance of the Deaf - c/ o Fennell, 117 Christopher St. #12, NYC, NY 10014. 212-989-8241 (TTY). Gay & lesbian.
Lesbian and Gay Osteomates (and Newsletter) - 105 Lake Emerald Drive, #305, Oakland Park, FL 33309.
Miscellaneous
Wheelchair backpacks, standard and custom, send SASE for info
to: Denise Buckbee, Run Amuk, Rt. 2, Rushford, MN 55971.
Women's History Research Center - articles and research on file
on womyn and disability. 2325 Oak St., Berkeley, CA 94708.
This list was put together by Barbara Ruth, with input from the editorial
staff.
131

Contributors' Notes ____________
Caryatis Cardea is a working class lesbian separatist from an Irish
Catholic/French Canadian family of nine children. Born andraised in Buffalo, NY, now studies history in Berkeley.
Jane Philomen Cleland: I am a freelance photographer living
and working in the Bay Area. I am currently working on a bookof photographs, maybe I'll call it A Love For Lesbians, maybe not,but something. I always love to talk with other lesbian photographers and artists, especially dyslexic ones - like me.
Max Hammond Dashu: I am a feminist, internationalist historianand proud to be self-educated. 15 years after the publication of
my comic book Witch Dream, I am back to work in this art form.
I love the mountains, Ethiopian music and my girlfriend.
Mandy Dee: I am white, born working class, lesbian feminist,with anarchist tendencies, bed bound with Multiple Sclerosis. I
was born spastic, brought up as a disabled child, so in my midtwenties I began to be an adult disabled from birth who also had
progressive disease. Writing is a race between ability and exhaustion to get it down before I become too physically tired to think or
write. I live in South London and have fought rivers of blood to
get the house I now have. The situation for disabled housing isdesperate.
I dream constantly about the special showcase school for thedisabled I went to. The experiences that we all had as disabled
people and disabled children keep me alive now. My poems havebeen published in Serious Pleasures, an anthology of lesbianerotica, and The Common Thread, a working class women's anthology.
Mandy died on 31st October, 1988. Her work appears here
courtesy of Caroline Halliday, her literary executrix.
Barbara Noreen Dinnerstein is a cute funny Jewish butch, who
happens to be fat and deaf and in recovery. She lives in San
Francisco now and was born in north New Jersey in 1958.
Amy Edgington: I am a white, disabled Lesbian, forty-threeyears old, living in the South. I am also an artist and a survivor of132Lesbian battering. I have written for Common Lives/Lesbian Lives,
Off Our Backs, Gay Community News, NCADV Voice and an
upcoming anthology from Cleis Press, And a Deer's Ear, Eagle's
Song and Bear's Grace: Relationships between Animals and Women (ASecond Collection).
Ayofemi Stowe Folayan is the co-author of "Pursuit of Happiness" a play on the LA lesbian and gay community from 1968-88;
and the performance piece "Talking About Talking: The Power toShape the World" with Robin Podolsky, on their Black/ Jewish
experiences of internalized racism, anti-semitism, sexism andhomophobia. Her work has appeared in In A Different Light: An
Anthology of Lesbian Writers, and the journals Forward Motion andBlack/Out. She is working on a novel while parenting an adolescent daughter.
Judy Freespirit: I live and work in Berkeley, California. Of late I
am in love with Amy Rachel Ackerman, born July 7, 1989,
weighing 9 lbs, 2 oz. Just call me Bubbie.
Peni Hall lives in Berkeley. She performs with Wry Crips - Disabled Women's Theater Arts. She continues to learn how to create
art and do theater while dealing with the everchanging realities
of chronic illness. She is currently enjoying planting a garden.
Susan Hawthorne works as an editor and reviewer. She hasedited two anthologies, Difference: Writings by Women (1985) and
Moments of Desire: Sex and sensuality by Australian Feminist Writers(with Jenny Pausacker, 1989). She lives in Melbourne, Australia.
Susan Hubert escaped from a college writing program years ago
and is just learning to write again.
Diane Hugs - a hard person to put in anyone category. With
severe multiple sclerosis, she manages to stir up as many minds
as she can. Being virtually bed-bound and blind would be roughon any writer, but it's coming.
Denise Jacobson: I am a disabled writer whose work has appeared in Across the Generations, Volume V, VII & VIII, Mama
Bear's News and Notes and The Book Review section of The Sunday
San Francisco Chronicle. I share my abode with my cat, Aries, mylife-long partner, Neil, and my very active, beautiful two-year
old, David.
133

Lynda Koolish is a feminist scholar teaching Afro Americanand American literature at San Diego State University. She
lives in Berkeley half the year.
Sandra Lambert is a dyke living in Gainesville, Florida, learning to survive on SSDI.
Adrienne Lauby is a disabled white lesbian feminist who lives
near the California Bay Area. She's forty years old and trying tocomplete her first novel. The characters in her novel are mostly
lesbian punks.
Emily Levy: Poetry intimidates me: I almost never read it, andoften deny writing it. My work - including poetry, if you must
know- can be found in Sinister Wisdom 31, Hikane issue 1, Maize
Spring '89, The Courage to Heal and With the Power of Each Breath.
I am at work on an interracial teen-aged lesbian novel. I have had
environmental illness for at least nine years. I live in coastal North
California with my partner, who has always found non-toxic
ways to impress me.
Jasmine Marah - disabled, dyslexic, enigmatic, eclectic, elastic,eccentric, enthusiastic, fat, forty, furious, fotomaker.
Teresa Myers is a 33-year-old blind woman of white and Cherokee ancestry. She enjoys gardening, writing, working with animals, crafts and public speaking. She lives alone with her SeeingEye Dog, Noser.
Shemaya Mountain Laurel is disabled, white and 31-years-old.
She lives in the middle of nowhere, on EI safe Dykes' land, writes,
and talks to plants. About three years ago, when her name wasstill Paula, she ran into an old friend who'd also gone fromhappily fat to unintentionally thin. Priscilla, Shemaya would love
to hear from you!
Patty Overland is a disabled dyke from New York City / Brooklyn/
Staten Island. She loves poetry and wheelchair basketball.
Pamela Pratt: I'm living in New York, have just finished my firstnovel, have been previously published in Sinister Wisdom and The
New York Native.
JoAnne Rome: I am a lesbian living in Sonoma County, CA and
I am very happy to be alive. This paper reflects one piece of thehealing I have been doing in my life.

134

Barbara Ruth is a disabled lesbian. More biographical information, both literal and allegorical, can be found in the poem "Pelvic
Mass Etiology."
Tee Smith: I am a fat disabled dyke who lives at the Pagoda. This,my first piece, is dedicated to Martha who continues to help me
grow not only with my MS but with all elements of my life.
Naja Sorella: I'm a 37-year-old Aries (but ruled by Aquarius)
Lesbian separatist, severely disabled by immune system illnesses . Stones and crystals are my preferred people to hang out
with. Present favs: Black Tourmaline, Celestite, Malachite, Amethyst. Future favs: Tiger eyes, Moonstone, Topaz. Foods I love
best: unsweetened carob chips, sauerkraut, fresh picked corn,roasted salted pistachio nuts (in the shell). My wonderful, deliciously round Jewish lover of six years helps make life with adevastating illness bearable. Berkeley, CA has been home for 7
years, but I hope to move before the big one hits.
Alison Ulman: Spontaneous combustion ... composting life. I
build environments, but am currently looking for someone toshare an environment that already exists ... waiting.
Jackie Winnow, founder of the Women's Cancer Resource Center, is a cancer activis t,lesbian feminist, cat aficionada, haggler forsocial justice, and lover of life. A moment never goes by without
the awareness of cancer and learning to adjust to an ever changing and limiting body.
zana: i'm 42, jewish, disabled with arthritis, scoliosis and allergies. i've been a part of lesbian country communities for nearly 10
years now, and dream of starting a truly accessible community ofdisabled dykes and our allies.

135

Books Received - - - - - - - - - - - - - With a Fly's Eye, Whale's Wit, and Woman's Heart, a collection
celebrating relationships between animals and women, edited by TheresaCorriganandStephanieHoppe, 1989,$9.95,Cleis Press, PO Box 8933,
Pittsburgh, PA 1522l.
A Lesbian Love Advisor, a guide to both the romantic and practical thatwould make Miss Manners blush, by Celeste West, illus. by Nicole
Ferentz, 1989, $9.95, Cleis Press.
The Names of the Moons of Mars, short fiction with a "cast of charactersliving on the outskirts of the American Dream" by Patricia Roth Schwartz,
1989, $8.95, New Victoria Publishers, Box 27, Norwich, VT 05055.
The Dog Collar Murders, third in the Pam Nilsen mystery series, amurder set in the complex arenas of the anti-pornography movement,
by Barbara Wilson, 1989, $8.95, The Seal Press, PO Box 13, Seattle, WA
98111 .
Life, After All, experimental and visionary short stories by Quebec
writer Suzanne Jacob, translated by Susanna Finnell, 1979 (trans. 1989),$9.50, Press Gang Publishers, 603 Powell Street, Vancouver, BC V6A
1H2.
Wildfire: Igniting the ShelVolution, the sequel to Going Out of Our
Minds, proposing a new model for women's liberation, by Sonia Johnson,
1989, $10.95, Wildfire Books, PO Box 10598, Albuquerque, NM, 87184.
Fatal Reunion, the second appearance of Detective Inspector Carol
Ashton from Sydney, Australia by Claire McNab, 1989,$8.95, The Naiad
Press, PO Box 10543, Tallahassee, FL 32302.
Rice and Beans, Valerie Taylor's 13th book, is set in Tucson's barrio;
1989, $8.95, The Naiad Press.
Heartscape, an American lesbian flees back to Portugal and discovers
her attachment to the growing gay community she left behind, by Sue
Gambill, 1989, $8.95, The Naiad Press.
Keep To Me, Stranger, an inter-faith lesbian romance set in Rosenstein's
department s tore is Sarah Aldridge's ninth novel, 1989, $9.95, The Naiad
Press.
Edgewise, Camarin Grae's fifth novel, is a spellbinder which places its
protagonist in a secluded, mysterious, feminist group, dealing withdeath and prophecies, 1989, $9.95, The Naiad Press.
Pleasures, erotic short stories full of mysterious lesbian strangers by
Robbi Sommers, 1989, $8.95, The Naiad Press.
136

Three Women, a menage a trois of sorts from Naiad's "Golden Age ofLesbian Literature," by March Hastings, 1989 (orig. pub. in 1958), $8.95,
The Naiad Press.
Chris, by Randy Salem, from "an era when love between women was a
shadowy and forbidden adventure," $8.95, 1989 (from 1959), Naiad.
A Fairer Sex View of the Martial Arts, an injunction to seek justice intraining and out, in pictures and essay, by Ann Throckmorton, 1987, $8,
PO Box 151111, Columbus, OH 43215.
Confronting the Crisis in LatiltAmerica: Women Organizingfor Change,
critical articles by Latinas on women's roles, social policies, alternative
organizations and feminism in Latin America, 1988, Isis International,
Via San Saba 5, 00153 Rome, Italy and Casila 2067, Correo Central,
Santiago, Chile.
Emma Goldman In Exile: from the Russian Revolution to the Spanish
Civil War, a 20-year history and sequel to Emma Goldman in America by
Alix Wexler, 1989, $24.95 (cloth), Beacon Press, 25 Beacon St., Boston,
MA 02108.
Frye Street & Environs: The Collected Works of Marita Bonner, in
Beacon's Black Women Writers Series, views of Black and immigranturban working class experiences, 1989, $9.95, Beacon Press.
The Tribe of Dina: A Jewish Women's Anthology, the revised andexpanded edition of the Sinister Wisdom classic #29/30, edited by Melanie
Kaye/Kantrowitz and Irena Klepfisz, 1989, $12.95, Beacon Press.
I Myself Am a Woman: Selected Writings of Ding Ling, one of 20th c.
China's most important women writers, edited by Tani E. Barlow with
Gary J. Bjorge, 1989, $24.95 (cloth), Beacon Press.
Behind the Mask, a regency-s tyle romance set in the earl y 19th c., by Kim
Larabee, 1989, $6.95, Alyson,40 Plympton St., Boston, MA 02118.
Beyond Labour Issues - Women Workers in Asia - reports and papers
from the conference held in October, 1987 in Hong Kong, compiled by
the Committee for Asian Women, $5, available from Women's International Resource Exchange,475 Riverside Drive, Rm 570, NY, NY 10115.
Ancient Child - Poetry AboutIncest by Marcella Bryant, 1989, $11.50pp,
Plain View Press, PO Box 33311, Austin, TX 78764.
Moments ofDesire-sex and sensuality by Australian feminist writers,
mixed lesbian and straight writing, edited by Susan Hawthorne andJenny Pausacker, 1989, Penguin (Australia); 1990 Viking (U.S.).
new year's eve, new, strong poetry by Gwynne Garfinkle, 1989, TypicalGirls Press, 14127 Margate Street, Van Nuys, CA 91401.
137

Announcements and Classified Ads _ _ _ __PUBLICATIONSHEATHER HAS TWO MOMMIES, by Leslea Newman, with illus. by
Diana Souza, a picture book for ages 3 to 103 that celebrates lesbian families. To order, send $6.95 + $1.25 postage (501t add. post. per book, Mass.
residents add 5% sales tax) to In Other Words Publishing, 351 PleasantStreet, Suite 233, Northampton, MA 01060. Donations welcome.

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Woman's Health Network, Greenpeace. Reclaim an older way of seeing
time and let the magical healing begin! Same day shipping, order tollfree: 1-800-372-0400, ext. 22. In Vermont, 1-800-445-5549, ext. L. Visa &Mastercard only. Or send $13.00 post paid, to Blessingway,321 Anawan
St., Rehoboth, MA 02769. Write for free brochure of classic wise woman
gifts.
TRIVIA 13 and 14, Inspired by the 3rd International Feminist Book Fairin Montreal. #13: Memory/Transgression: Women Writing in Quebec.
#14: Language/Difference: Writing in Tongues. The cultural diversity
and radical experimentation of women's writing. $10 for both: PO Box
606-A,N. Amherst, MA 01059. Subs (3 issues): $14 dom./$16 out of US.
Out/Inside, a Women's Newsjournal Focusing on Lesbian Prisoners.
Barbara Ruth, Ed. $6/yr, $1 .50 sample (+501t postage). PO Box 2821,
Oakland, CA 94609.
CALLS FOR SUBMISSIONBLACK LESBIAN ANTHOLOGY seeks unpublished poetry and shortfiction. Send SASE with submissions, or for more info, to: Terri Jewell,
211 W. Saginaw, #2, Lansing, MI 48933.
DREADLOCKS anthology, edited by Black Feminist writer Terri Jewell.
Send SASE for info: 211 W. Saginaw, #2, Lansing, MI 48933.
WOMEN AND CANCER an thology, ed. by Judith Brady for Cleis Press,
seeks submissions in all forms. Send submissions or inquiries to: Judith
Brady, 62 Sussex St., SF, CA 94131. Deadline: December 30,1989.
138

THE EROTIC - a special issue of Conditions, seeking all forms of
exploration and discussion of the erotic from lesbians. Send SASE withsubmissions or for more information: Conditions, Box 159046, Brooklyn,
NY 11215. Deadline: February I, 1990.
LESBIAN BEDTIME STORIES VOL. II - unpublished short stories.
Send ms. and queries with SASE to: Tough Dove Books, Box 528, Little
River, CA 95456. Deadline: April 1990.
WOMEN'S HITCHHIKING STORIES: for development into a performance piece. Deadline: January 1990. Send stories or taped narratives toCarolyn Gage, 272 Orange St., Ashland, OR 97520. Deadline: Jan. 1990.
FANTASY/SCIENCE FICTION by and about women, for a Crossing
Press anthology, Susanna J. Sturgis, ed. Send ms. & queries with SASE
to: PO Box 39, W. Tisbury, MA 02575. Deadline: January IS, 1990.
WOMEN'S RECOVERY STORIES for anthology to be published by
Crossing Press. Send ms. & queries with SASE to: Susanna J. Sturgis, PO
Box 39, W. Tisbury, MA 02575. Deadline: February IS, 1990.
WOMEN'S STORIES ON THE DEATHS OF THEIR MOTHERS for ananthology. Send ms. & queries with SASE to: Helen Vozenilek, PO Box
18, Berkeley, CA 94701. Deadline: December 31, 1989.
LESBIAN AND GAY TEACHERS AND STUDENTS: THE POLITICS OF
THE CLASSROOM, work in all forms addressing rights, homophobia,
gay parents, peer & community relations, gay students, bibliography,
more - queries and ms. to HerBooks, PO Box 7467, Santa Cruz, CA
95061 . Deadline: December IS, 1989.
HEALING FROM INCEST THROUGH ART - anthology of works inall media, to be published by Seal Press. Send 6-8 pp prose or poetry, 46 slides, with SASE to: Louise Wisechild, 60619th E., Seattle, WA 98112
THE LESBIAN AND GAY WEDDING BOOK seeks photos, vows and500-1000 words on the process. For submissions or more info: WIM Publications, Dr. SDiane Bogus, 3601 Crowell Rd. #100, Turlock, CA 95380.
LA BELLA FIGURA - a literary journal for Italian-American women,with a special welcome for lesbians. Send SASE for guidelines andsubscription info to Rose Romano, PO Box 411223, SF, CA 94141-1223.
FATHERS AND DAUGHTERS - a prose anthology from Crossing
Press. Send queries and ms. to editor: Irene Zahava, 307 W. State St.,
Ithaca NY 14850. Deadline: February I, 1990.
LESBIAN HUMOR, any and all forms, for a Crossing Press anthology.
Send queries and ms. with SASE to: Irene Zahava, ed., 307 W. State St.,
Ithaca, NY 14850. Deadline: February I, 1990.

139

CONTESTSPINSTERS/ AUNT LUTE LESBIAN LONG FICTION contest offers$2,000 prize for novel-length, well-crafted fiction focusing on the lives of
lesbians. Ms. accepted January 2-February 28, 1990. Write for rules: PO
Box 410687, SF, CA 94141 .
CONFERENCES
NATIONAL LESBIAN CONFERENCE, April 1991 in Atlanta, Georgia.
Local organizing and national meetings are happening around the US.
now. For more info, write: PO Box 3057, Albany, NY 12203.
LESBIAN ARTISTS' EXHIBITION and WOMEN'S CAUCUS FOR ART
CONFERENCE, NYC, Feb. 1990. For info, send SASE to Myriam Fougere, 118 Fort Green Place, Brooklyn, NY 11217.
IV INTERNATIONAL FEMINIST BOOKFAIR, Barcelona, Spain, June
19-23,1990. Exhibits, workshops, discussions in Catalan, Spanish, English and French. For informa tion, wri te IV In tern a tional Ferninis t Bookfair,
Valencia, 302/08009 Barcelona, Spain.
ASSOCIATION FOR WOMEN IN PSYCHOLOGY 1990 National Conference: "Feminist Psychology ... Reclaiming Liberation," March 8-11,
Tempe, Arizona. Activist, accessible orientation. 1990 Conference Collective, 110 W. Geneva Drive, Tempe, AZ 85282.
7th ANNUAL NATIONAL GRADUATE WOMEN'S STUDIES CONFERENCE: ''Women in Scholarship . .. There Are No Limits." U of Penn.,
Philadelphia, Feb. 23-25, 1990. Info: c/o Women's Studies Program, 106
Logan Hall, 249 S. 36th St., U of Penn., Philadelphia, P A 19104-6304.
OUTWRITE '90. the first National Lesbian & Gay Writers Conference,
March 3-4,1990, in SF. For info, write OutWrite c/o OutLook, PO Box
460430, SF, CA 94146-0430.
GENERALGOODMAN ANTI-PORN DEFENSE FUND seeks contributions tofight felony charges from anti-pornography action in Amherst, MA in
Jan., 1989. Donations payable to: H. Horak/(Goodman Anti-Porn Defense), PO Box 953, Northampton, MA 01061, or write for more info.

140

COMMON LIVES/LESBIAN LIVESa lesbian quarterly
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Current & Back Issues(partial list of contents)#38 / Emphasis on Lesbian Relationships. Fiction and poetry.
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political theory, children, racism, anti-Semitism, lesbians in prison• Lee, Tallen, Evans, Pratt, Robson, Quinlan, Livia, Hardy, Gray, Green, Justicz •#36 / Special Focus on Surviving Psychiatric Assault/Creating Emotional
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on getting locked up, getting out, community, therapy and therapism• Hope, Aal, Caicedo, thundercloud, Robson, Sien, Moran, Ward, NiHera, Willcox •#35 / Special Focus on Passing. Includes work on / by Black, Jewish, Native
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Separatism, Disability, Building and Transformation• Katz, Ortiz Taylor, Hoagland, Allegra, Livia, Louise, Rios, Danaan, Marah •#33 / Special Focus on Wisdom, Lesbians of Color, Non-violence, War Stories,
Incest, Leaving a Will, Assimilation, Fat Poems, Coming to Terms• Anzaldua, Ruth, Rich, Chrystos, Kaye/ Kantrowitz, Hardy, Gilmore, Brody, Rakusin •#32/Special Focus on Illness, Death, Mourning, Healing, the Disappeared,
Hunting Season, Dealing with Suicide, Cancer, New Ritual Observances• Maia, Allegra, Sears, McDonald, Waters, Hansell, Rosenblum, Butler, Stinson •#311 Special Focus on Sex and Fiction, Coming out in the South, Found Goddesses, Waiting, Bobe Mayse, Sex and Socialist Feminism• Smukler, Blackwomon, Romano, Davenport, Dykewomon, McNaron •#28 / Special Focus on Women & Work; Body Image, Size & Eating, Aging,
Comedy about Outlaw Lesbian Communities, Courage, PC / PI, Letter on #26• Clarke, Heather, Klepfisz, Sturgis, Gould, Boucher, Gomez, Sardella, Moran •#27/ Special Focus on Girlhood, Sexuality and Violence, Office Work, Navy
Dykes, White Trash, Women of Color / Women in Israel/Women in Lebanon• Adnan, Felman, Grahn, Schalet, Bogus, HaMa'avak Touch, Quintanales, Anzaldua •#26 / Special Issue: To Go To Berbir by Jill Drew, a book-length journal written by an American nurse working in Beirut during the 1982 Israeli invasion#25 / Butch / Fem in the 50's, Women's Peace Encampments, Erotic Satire,
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