It was like history revisited when we first met. You looked
so much like Abraham Lincoln. And like your wife, you exuded
a most gentle, welcoming grace. Though having been on the
road for over five weeks and with another nine weeks still
to go, I felt as if I arrived home.
Little did I know at the time that this was to mark the beginning
of an influential, long-term contact, my being a widely experienced
traveler and quite used to the constantly intense, albeit
fleeting, meetings of new faces that happens to travelers
when on the road.
And little did I know at the time just how much you would
teach me in your quiet, albeit powerful way, about life in
a wheelchair. And to this very day, close to 11 years later,
your teachings still resonate with awesome clarity and truth.
Perhaps the most profound lesson you gave me was the attitude,
"I'm disabled, soooo?" Apparently, this philosophy
did not dampen your activism one bit. In fact, it seemed to
be the very white-hot core of your disability activism.
My angels made very certain that I'd meet you when first
beginning to use the wheelchair myself. Again, in your quiet
manner, you conveyed my life henceforth would be fine, and
that disablement was more of society's problems than my own.
You made very certain I understood well this distinction.
In the 11 years that have since elapsed, Adolf, I have not
only travelled from disability shame to disability pride,
but I have become a staunch disability rights advocate, testifying
to such via the written word through both newspaper columns
and through a book covering the same.
It was by no means an easy path in which to travel. Like
you, I found myself dealing with disability issues a tough
row to hoe, largely because of society's widespread ignorance
and flagrant discrimination. And so the birth of my disability
activism. But also, like you, after some struggles, after
some very hard-core wrestling, I found life very worth living.
Though at the beginning of my new status as now a fully-fledged
member of the disability community, it took me a while to
embrace my membership. I still needed to say good-bye to the
ablebodied community with which I considered myself to be
a member.
But being in Sweden for most of the summer of 1988 to photograph
and write about accessible, aesthetic architecture, my awareness
of barriers that people with disabilities (PWDs) so unfairly
faced provided me with an early onset of outrage. And, of
course, this added early fuel to my disability activism.
Now, I cannot see a separation between my wheelchair and
disability activism. It is a marriage set in rock.
I recently interviewed America's elder disability leader,
Justin Dart. I asked him, "Given the number of years
you have been involved in disability activism, what advice
would you give to someone newly disabled?"
His answer came from a speech Justin gave at the Task Force
Youth Conference in Wash., DC, July 22, 1999:
And he replied, "There are many roles. Follow your conscious."
So eleven years after meeting you, Adolf, I am still learning
and still trying. But like you, for myself, I wouldn't change
a thing. Why? I'm now a better human being."
What's Pride Got to Do with It?
Copyright 1998 by Laura Hershey
"Disabled and Proud" read the hand-drawn
poster duct-taped to the frame of my wheelchair, across
the front of my legs. "What does that mean?" a
stranger asked me as if we'd been having an ongoing conversation.
The unsympathetic sun forced me to squint,
so I couldn't really meet the stranger's look straight on.
And he was on his way into the grocery store. The automatic
door was already standing open, inviting him irresistibly
toward the refrigerated interior, away from the grinding
heat. I knew I had to make my response quick and to the
point. "We're just trying to let people know,"
I said, "that the Jerry Lewis Telethon doesn't tell
the truth about our lives. The Telethon says we're helpless,
pathetic objects of charity. But we're not. We have dignity
and pride."
"Oh," the stranger said, and moved
on.
Protests are a form of communication all their
own. You have to learn to take full advantage of that momentary
human contact which, in the course of an ordinary day, is
filled with small talk, or remains empty. Most interactions
with strangers are fairly nondescript -- "Excuse me."
"After you." "Thanks." Or, as summer
temperatures increase and road rage spills over into pedestrian
life, meetings between strangers become less pleasant --
"Hey, look where you're going." "I was in
line first."
But during a protest, even a simple informational
picket like the one we did on Labor Day, those brief encounters
suddenly fill with meaning. Strangers become an unsuspecting
audience, potential converts who must be confronted one
way or another; and who are as likely as not to confront
you right back. Your presence, and whatever information
you manage to convey in a two-second conversation, often
challenges them on some level. They have every right to
challenge you in turn. That shopper's blunt question --
"What does that mean?" -- challenged me to explain
myself and the slogan I wore so boldly. My response could
have been shorter, smarter, more sound-bite-sharp. But it
was the best I could come up with on short notice. The opportunity
to reach him ended when he passed through that supermarket
door. Who knows whether my answer made any more sense to
him than the poster that had prompted his question?
Indeed, who knows? Maybe he pocketed the flyer
that one of my comrades thrust toward him. Maybe, when he
got home, he studied it and his curiosity grew. Maybe he
sat down at his computer, if he has one, and started surfing
the 'Net to see what else he could learn. Maybe he typed
the word "disabled" into a search engine, found
some interesting websites, followed some links, and ended
up right here, reading these words. And maybe as he's reading,
he's still thinking, "'Disabled and Proud'? -- What
does that mean?" If so, maybe he deserves a more thorough
answer.
Pride has played a key role in many civil
rights movements. It's often been a reaction to, and a rejection
of, efforts by the majority culture to instill shame among
members of the minority. In the 1960's, African-Americans
overturned centuries of violent degradation with the slogans
"Black Power" and "Black Is Beautiful."
A decade later, gay men and lesbians fought back against
police harrassment, religious condemnation, and oppressive
psychiatric practices by proclaiming "Gay Pride."
Now, as the century ends, people with disabilities
are loudly resisting the notions that we are inferior, that
our disabilities somehow dilute our humanity. Those notions
-- which the Jerry Lewis Telethon perpetuates, but certainly
didn't invent -- do more than insult us; they actually diminish
and endanger our lives. Authorities stand idly by as Jack
Kevorkian kills dozens of people with non-terminal disabilities.
In Oregon, Michigan, and other states, a movement gathers
steam to legalize and expand this killing. At the same time,
public and private health care providers impose lethal limitations
on the things that people with disabilities need in order
to live healthy, independent lives. People with disabilities
continue to be passed over for employment and social opportunities.
Many are segregated into separate-and-unequal classrooms,
jobs, and housing.
Against these odds, pride might seem a weak
weapon. Pride doesn't pay the rent, or an attendant's wages.
It doesn't get you onto an inaccessible Greyhound bus.
But pride can prepare you to demand these
things -- and that's a pretty good start. Equipped with
pride, you're not going to be very willing to beg and plead
and hope the public is feeling generous. That's the Telethon's
approach. Instead, you'll assert that you have the right,
both to survive and to thrive. You'll insist that you're
an asset to society, disability and all; and that therefore,
it's in society's best interest to make sure that you're
integrated, accommodated, supported -- even if that costs
money. You won't apologize for using public dollars, or
for making demands upon private businesses, because you
figure that living in a human community means giving and
taking. It means celebrating diversity, and enjoying interdependence.
My poster didn't say "Disabled but Proud."
It didn't say "Proud of Being Disabled." There's
no contradiction here, and no false sense of moral superiority
conferred by living with a disability. I'm not taking credit
for the fact that I was born with a disability. That was
pure chance. Nor do I consider myself, or other people with
disabilities, better than non-disabled people (though I
will admit, just between you and me and the entire cyber-universe,
that I think people who aren't actively involved in the
disability community are missing out on a hell of a lot).
So then, what does it mean to be "Disabled
and Proud"? For me, it means that while everyone else
is making their own unique contribution to the world, I'm
making mine too. It means I can be a lot of things -- a
compound of identities, roles, experiences, gains, losses,
feelings, ideas, actions -- and that every piece of me belongs
together. None of my pieces need to be erased or hidden.
And I'll fight the idea -- whether promoted by Jerry Lewis,
or by Jack Kevorkian -- that disability is intolerable and
must be eliminated from the world.
"Disabled and Proud." It says it
all: I belong in the world, with every aspect intact and
visible. I will not seek to conform in order to be "mainstreamed."
If the mainstream can't accept me as I am, maybe it needs
to flow in a different direction. Instead of trying to go
with someone else's flow, I'll help to expand the river,
to carry and support all kinds of crafts.
Read more of Laura's writings at: http://www.cripcommentary.com/prev98.html#9/9/98
Back to Menu
Eleanor Helps Herself
by Eleanor Bailey
http://www.mouthmag.com/issues/58/eleanorstory.htm
I am 11 years old and in fourth grade. This
year some little girls came to my school. I heard some people
say they had Down Syndrome. On a Saturday I asked my Mom,
"Do I have Down Syndrome?" Mom said that I do.
I went to my bedroom and closed the door. I didn't cry but
I shut the door and was mad and upset. I didn't want to
have Down Syndrome.
On Monday I went to school. I told my teacher,
Mrs. Karr, that I had an announcement to make. She gave
me the microphone and I said: "I have two things to
say. First, I have Down Syndrome and second, I am really
scared that none of you will like me anymore."
My friends were really nice. They said they already knew
that and they still liked me. Some of them cried. I got
lots of hugs.
But I am still not happy!
On Wednesday my Dad and I got on an airplane and went to
Chicago. On the airplane I listened to my Walk Man. I have
a song that goes, "Clang, clang, rattle, bing, bang,
I make my noise all day." I thought that is what I
can do. Even with Down Syndrome I can still make my noise.
We went to the TASH Convention. There were lots of really
cool people there. We stayed in a big hotel. In our room
there were two bathrooms. One had a shower and one had a
bathtub. I made a sign that said "Girls" and put
it on the door of the one with the bathtub. I didn't want
my Dad to come in.
I took lots of baths. I thought if I took enough baths I
could wash my Down Syndrome away. I also thought I would
put hair spray on it but my Mom and Dad won't let me have
hair spray. I tried to put sun screen on it because I thought
that maybe then I wouldn't have to have it all of the time.
But my Dad said that none of that would work.
I have friends that were at TASH. My really special friend
is Tia Nelis. She lives in Illinois. Tia has a disability
but when she talks people listen. They really listen. Tia
is a leader and she really likes me. I told Tia that I have
Down Syndrome. I was surprised when she said that she has
always known that. She said she didn't care. She said that
I am an important person and that Down Syndrome is not as
important as being a wonderful person. When I grow up I
want to be just like Tia!
I have other friends at TASH who told me the same thing.
I met a really nice person named Katie. Katie goes to college.
She has Down Syndrome. I also talked to my other friend
Liz Obermayer. Liz has a new job and is moving to Maryland
which is a state. Liz has a disability but she is a leader
too. She is on the Board of TASH. Liz goes to lots of meetings
and people listen to her too.
I got my name from Eleanor Roosevelt. Lots
of bad things happened in her life. I have read all about
her. She was a leader. I also know about Rosa Parks, Martin
Luther King, Nelson Mandela and Robert Kennedy. Lots of
bad things happened to them but they were strong and were
leaders. My Dad says they made people proud of who they
are and made them free.
I wish I didn't have Down Syndrome. But I
do and I am a person with lots of plans.
When I wonder what to do I remember my song. I will do what
it says. I will go 'clang, clang, rattle, bing, bang and
make my noise all day.' Even though I am sad I know I can
be as tough as anyone. That is what I want to do.
Just be me.
Back to Menu
DISABLED WOMAN
The Forging of a Proud Identity
By Nadina LaSpina
RIPOSTO
In Riposto, the little town in Sicily where I was born and
lived till I was 13, every girl learned, at a very early
age, what her destiny as a woman would be. Destino. That
was the word used in Sicily, when I was growing up in the
50's. Every little girl learned that "a woman's destiny"
was to get married and have children. Unless, of course,
she was too ugly to find a man that would marry her, then
she could became a nun, or, horror of horrors, end up a
zitella - an old maid.
At a very early age, I learned that getting
married and having children was not my destiny. The message
came across to me quite clear though never loud -- it came
in hushed tones and sighs and sorrowful looks. I would not
grow up to be like other women because I was not like other
girls -- I was a crippled girl. Ciunca, that's the Sicilian
word for crippled.
Oh, I was a pretty little girl. But I knew
beauty was wasted on me. When I was 4 or 5, I started insisting
that I was brutta, ugly. I would get very angry when anyone
said I was pretty. "Oh, che bella bambina! Such a pretty
little girl! Che peccato!, What a sin, what a shame!"
There would be such sorrow in their voice, such an anguished
look on their face... And I would look at my mother, who
was carrying me, and, even if she had been laughing a minute
before, suddenly her eyes would fill with tears and her
face would turn into a mask of agony and shame. She looked
like the Addolorata. The Addolorata (the word means "grieving"
"sorrowful") was a statue in the convent across
the street from where we lived of Mary holding the dead
Christ. It was a Sicilian version of Michelangelo's Pieta:
the mother dressed in black and purple silk, sorrow carved
deeply into her painted face. I didn't want my being pretty
to make people sad. So I wanted to be ugly. If I were ugly,
at least I could grow up to be an old maid or a nun.
I never did understand why the other girls
thought old maids were so horrible. The one old maid I knew,
a distant cousin of my maternal grandmother, was rather
nice and I didn't even think she was that ugly. But whenever
she came over, it was to ask for money. "Why doesn't
she have any money?" I would ask my mother. "Because
she has no husband," was always the answer.
I certainly didn't think being a nun was so
bad. At the convent of the Addolorata there was an elementary
school. Right after I turned five, I started first grade
there. My mother used to carry me across the street and
hand me over to the nuns who would carry me to the classroom,
and carry me to the chapel and out to the garden and even
into the kitchen. I was passed around from one nun to another.
They all smelled so good, of incense and food and flowers.
They spoke of Christ as their spouse. I thought it would
be nice to live at the convent. But I was afraid that Christ
would not want me as a his spouse. All the nuns could walk,
none of them were crippled like me.
Connie Panzarino, growing up Disabled at the
same time but in NY, did ask her catechism teacher: "When
I grow up, can I become a nun like you? -- No darling. I'm
afraid that to be a nun and to serve God you have to be
able to walk and take care of yourself," was the answer.
"Even God was rejecting me," Connie writes in
The Me In the Mirror.(1) I know just how she felt.
When I first read Connie's book I was surprised
to learn how very similar our childhood experiences had
been though we grew up in different continents. I especially
identified with her total dependence on her mother: "It
always seemed like I belonged to my mother. Since she took
total care of me, she had total power over me . . ."
"It was hard to know if I could ever exist separate
from her..."(2) Connie's words could be my own.
Unlike Connie's mother, who would at times
become impatient and even hit her, my mother did not allow
herself to get angry. She was resigned to her destiny. She
knew she had to atone for the sin of having a crippled daughter.
She accepted her suffering like a good woman. You see, in
Sicily, all women suffered. They believed that a woman's
destiny was to suffer, atone for the sin of being a woman.
I remember sitting on my mother's lap listening to the Sicilian
women talking about their sufferings: the curse of menstruation,
the toil of pregnancy and childbirth, the ravages to the
body caused by pregnancy after pregnancy... and they suffered
the exhaustion of raising children, the rigors of poverty...
and many of them suffered their husbands - their brutishness,
maybe their beatings. My mother, carrying in addition the
cross of a crippled child, was the epitome of suffering
womanhood. She was the living Addolorata.
The nuns did their best to instill in me the
sense of guilt and of shame, and to teach me to embrace
my own destiny of suffering. One day, when Sister Angelica
started with her "Offer your suffering to the Lord
"routine, I rebelled: "But I want to be happy!"
I blurted out. She started stroking me and kissing me: "Oh,
my poor darling, how could you be happy? You can never be
happy!" I don't know were the anger came from. "I
can be happy," I cried and I struggled to free myself
from the nun's ominous embrace.
But how could I expect to be happy when I
really had no idea what would become of me. If I couldn't
get married and have children like other women, what could
I do? I didn't know any women who worked outside of their
home. I had heard that unmarried women found work cleaning
rich people's houses. But I knew I'd never be strong enough
for that. My mother, who was an expert with needle and thread,
told me women could make money as seamstresses. She tried
to teach me to sew. But I hated it. I would stick my finger
with the needle on purpose and cry.
When I was in third grade, a young woman came
to work as a teacher at the convent. I was really surprised
because I thought only nuns could be teachers. She had long
hair which she wore in a pony tail. I fell madly in love
with her and decided I would not let my mother cut my hair
anymore, and that I would be a teacher. My heart was broken
when she didn't come back to teach at the convent the next
year. I found out she had gotten married. So I let my mother
cut my hair short again and I called myself stupid for believing
I could be a teacher when I couldn't walk.
In school I was a model student, the nuns'
pride and joy. My progress seemed to make my father very
happy. He always encouraged me to study -- which was a bit
strange since other girls's fathers didn't really care how
their daughters did in school. Their sons were a different
story. Was my father thinking that I 'd better use my brain
since my body was no good? Did he believe back then that
using my brain could get me anywhere - in Sicily?
But my father had a plan: he would take me
to America where I would walk, where I would be cured. My
father was a gentle, generous, funny man. My mother was
always at a loss when the other women exchanged stories
about their brutish husbands. I adored my father. To me
he was the smartest, the handsomest, the greatest man in
the world. I always believed everything he said. He had
taken me to Catania, to Messina and to Rome, to the best
hospitals, to the best doctors, in the quest for a cure.
But his dream was America. He was sure the doctors there
would know what to do to cure me.
Doctors scared me because they always hurt
me. I preferred being taken by the women (by my grandmother,
my aunts, my mother) to the healers, and to the witches.
Oh, I liked the witches! They scared me, but it was an exciting
kind of scared. I knew they would never hurt me like the
doctors did. Of course, I never thought they could make
me walk, but I did believe they could teach me how to fly.
Everyone in Sicily had seen the witches flying in a circle
holding on to each other's hands in the dark of night. To
me it sounded like such a wonderful game, even better than
girotondo (ring around the rosie), the game little girls
liked and little boys snubbed. I played girotondo. I would
sit in the middle of the circle & watch the other girls
go around me.
All the talk about cure just confirmed for
me what I already knew: that there was something terribly,
horribly wrong with me. I just could not remain the way
I was, ciunca. I was just no good that way. Nobody wanted
me to be the way I was. The only way for me to have a life
was to be cured. And since they couldn't cure me in Catania
and Messina and Rome, I had to go to America. But what if
we never made it to America? What if I never got cured?
Sometimes I thought that if I could just sit
someplace, if I didn't have to be taken anywhere, if I never
had to go to the bathroom, maybe people would not notice
that I was crippled.
There must have been Disabled people living
in the town, but I never saw them. I had heard people referring
to the shoemaker as "cripple." I didn't understand
why, maybe he had a limp. The town beggar was called "cripple,"
and also "dumb" "babbu." He walked and
talked funny -- he probably had CP.
I didn't know any Disabled women and I didn't
know any other Disabled kids. My mother once told me that
there was a crippled girl just like me who lived in an another
town. Maybe she made her up so I wouldn't feel that I was
the only crippled girl in the world. I thought about that
other little girl as a lost sister and often fantasized
about meeting her and playing girotondo with her.
(That's from my memoir. Well, every crip is
writing a memoir these days, so why not me?)
ROLESSNESS OF DISABLED WOMAN
My experiences growing up in a little town
in Sicily were probably more extreme than those of Disabled
girls growing up in the US, but I know they were not unique.
Riposto. That's where I'm coming from. That's where I started
out. But didn't we all start out back there? Don't we all
recognize that place, that time? We thought we were the
only ones, we felt we were to blame, we didn't know what
would become of us. And I'm not talking only about those
of us who grew up Disabled, but also those who acquired
a disability later, as adults, and discovered that everybody
suddenly seemed to be writing off their life. Because our
history has been covered up and never been recorded, because
our people have been hidden away and silenced, it is common
when we find ourselves in disability land to feel isolated,
to think we are the only inhabitants. In a world where disability
is intolerable and the consent is that it must be eradicated,
in a world where different means inferior, where do we fit
in? How can we fit in? If we cannot be cured, can we at
least be as inconspicuous as possible, can we try to cause
as little trouble as possible, can we try to look and act
as "normal" as possible, can we at least make
the world tolerate us? The future can seem a desolate wasteland.
That's true for all of us: Disabled women
and Disabled men. But for Disabled women, oppressed by sexism
as well as by ableism, that wasteland can be even more desolate.
In 1981, Adrienne Asch and Michelle Fine wrote their groundbreaking
paper "Disabled Women: Sexism without the Pedestal."
Since then we've been talking of Disabled women as "roleless."
Not seen as fit to fill economically productive roles because
we're women, we are, because we're Disabled, shut out of
the traditional roles of wife, mother, homemaker, nurturer,
or lover, and deprived even of women's double-edged status
of "sex object on the pedestal."(3)
Carol Gill sees the de-sexualization of the
Disabled woman as eugenic in intent. "Keeping us genderless
by discounting us as women and as sexual beings helps to
prevent us from reproducing, which keeps us harmless to
society."(4) Barbara Waxman Fiduccia agrees: "I
believe this is done tacitly to keep us from doing the thing
that poses an overwhelming threat to our disability-phobic
society: marrying their sons, bearing their grandchildren."(5)
Barbara Waxman has been rousing us -- Disabled men as well
as Disabled women -- to fight our sexual oppression for
many years. "Why hasn't our movement politicized our
sexual oppression as we do transportation and attendant
services?" she asked in 1991.(6)
Barbara Waxman and Marsha Saxton together
have written a Disability Feminism Manifesto. "Mainstream
feminists have battled limited gender roles for nondisabled
women: sex object, wife and mother. But as Disabled women,
we've had the opposite problem: We've been denied sexual,
spousal or maternal roles when we wanted them." So,
first of all, they proclaim, "We want our sexuality
accepted -- and supported with accurate information."(7)
Indeed, Disabled women have been fighting
for the right to be attractive and sexual, at times acting
in ways that would make our feminist sisters frown. I remember
that as a feminist I was appalled when Ellen Stohl (a gorgeous
quadriplegic woman) posed for Playboy. But as a Disabled
woman, I understood and fully identified with her need to
flaunt her sexiness. Recently, in a Disabled women's group,
a few of us started talking, with some embarrassment but
with a great deal of gusto, about having been in our younger
days "nymphomaniacs" (those were the days before
AIDS).
Because we are not seen as "real women
with real women's bodies," Waxman and Saxton remind
us, we are denied access to information on reproductive
issues and often to reproductive health care. Many of us
are not offered birth control, while others are forced to
use birth control and even sterilized against their will
(certainly true for our sisters with mental retardation).
Because inaccessible exam tables and mammography machines
make it difficult for many of us to go for routine screening,
and because, I will add, physicians are less likely to investigate
signs of serious conditions, such as cancer, when the woman
has a disability, our very lives are at risk. Disability
Feminists say: "We want equal access to reproductive
health care."(8)
The Disability Feminism Manifesto also calls
for the elimination of disincentives to marriage which are
built into programs such as SSI and Medicaid. And it proclaims
the right of Disabled women to have children. "We want
more resources for mothers with disabilities to care for
their own children and to have access to adoption."(9)
Because abortion is either not available or
is forced upon a Disabled woman because it is assumed she
cannot be a good parent, disability feminists say: "We
want uncoerced choice."(10)
Lastly, because nondisabled women are routinely
pressured to use prenatal tests to find out if their unborn
baby has a genetic condition and then pressured to abort
if the test shows the presence of a disability, Waxman and
Saxton say: "We want all women to understand that they
can refuse to have these tests [and refuse to have an abortion].
We want children with disabilities to feel welcome in the
world."(11)
There is no question that selective abortion
is eugenic in intent. We have good reasons to worry about
being "selected out." Attempts to do away with
our kind run like a thread through human history, from Greco/Roman
times when Disabled infants where exposed to the elements,
to Nazi Germany's euthanasia program, which saw the systematic
extermination of at least 200,000 Disabled people. We are
always at risk of new ideas which allow old prejudices to
strut around in the clothing of compassion, of new and desirable
social advances. There can be no question that such practices
as the selective abortion of Disabled fetuses, and the non-treatment
of Disabled infants, as well as the rationing of health
care, the coercion of Disabled people into signing DNR's,
and (today's hot button issue) physician assisted suicide,
all have as a goal the extinction of the Disabled population.(12)
VIOLENCE AND ABUSE
We should include in the Disability Feminism
Manifesto that "Disabled women want to live free from
violence and abuse." Violence and abuse issues were
rated the number one priority by women with disabilities
in a national survey (conducted by Berkeley Planning Associates)
in 1996. Studies overwhelmingly show that we are more at
risk of abuse (2 or 3 times more).(13) That's not surprising,
when we add to all the issues of control and power brought
up in Corbett O'Toole's very powerful film (shown at the
Conference), the hatred of disability, so pervasive in our
society. As Disabled women we are more likely to tolerate
violence and abuse. We have been taught to hate our disabled
bodies, so, at some level, we may feel our bodies deserve
to be hurt. We have been told we are not attractive and
sexual, so we should be "grateful" for any attention
we get.
Disabled women have spoken out about a rarely
identified form of abuse: being forced to disrobe and pose
for display and photos in medical education settings, usually
before mostly male audiences of doctors & medical students.
It was certainly most traumatic for me, 13 year old, coming
from a place where modesty was valued as a woman's supreme
virtue, to have to strip naked in front of a room full of
men.
In discussing such experiences with my friend
Hope DeRogatis, we both recalled that, not only we did not
complain, we did not mention anything to anyone including
our parents. Hope remembered forbidding her parents from
going into the examination room with her. She couldn't bear
to have her parents witness her humiliation and, at a certain
level, her guilt. It was a dirty secret. We reacted to this
violation the way many girls and women react to sexual abuse
and rape.
Disabled women may also put up with abuse because we often
feel that our bodies do not belong to us. We are forced
to get used to strangers touching us, handling us, manipulating
us, inflicting pain on us. Many medical procedures and treatments
are undoubtedly forms of violence and abuse and torture.
I was in and out of hospitals for ten years, had surgery
13 times. I was a good patient, never complained. I know
I felt an obligation to my father who uprooted the family
so I could to be cured. Maybe I thought I had to atone for
the sin of being a crippled girl, accept my destiny of suffering,
like my mother, like the good women of Sicily. In those
hospitals, I put up with waking up suddenly in the middle
of the night because I felt a man's hand on my breast, or
with having a penis pushed in my face while being pushed
down to therapy, the same way as I put up with the surgeons'
scalpels, and the body casts, the braces, the learning to
walk, the falling & breaking of knees and ankles...
till my polio legs were wrecked beyond repair and had to
be amputated at the knees.
BEING WITH OTHER DISABLED KIDS
But there were happy times in those hospitals.
It was in the hospitals that I came into contact for the
first time with other Disabled kids. The very first hospital
I was in was the Hospital for Special Surgery in NY. I was
on a floor of children and teens. All had disabilities.
I couldn't speak a word of English, but I started making
friends rights away. I was elated. In Sicily I had thought
I was the only crippled girl in the world, and here were
all these other Disabled girls and boys. There was a beautiful
girl my age named Wendy who had spina bifida. I had dark
hair, she had blond hair. I had brown eyes, she had blue
eyes. We became best friends.
Cheryl Marie Wade recalls: "When I was
a teenager becoming a Cripple, the happiest times I had
were those spent in a children's convalescent home ... where
I lived with other teenagers becoming Cripples. To them
I was not the other. It was here a seed got planted in me
that I was connected to a group, and that as a group we
had things in common that belonged to us."(14)
Judy Heumann also speaks of being with other
Disabled kids as a very necessary step in identity formation
and as a first step in her politicization. "...we talked
to each other about situations such as, "What would
you do if you were going down the street and somebody started
staring at you?" We decided that we would turn around
and say, "Take a picture, it lasts longer." I
remember the first time we said this to somebody... we were
laughing so hard. It was school experiences like these that
made me realize that together with other Disabled people
we could assume power."(15)
WENDY
Finally out of hospitals, and starting college,
I went through a time when I tried my best to fit in the
nondisabled world. As all young people, I wanted to be accepted,
I wanted to be liked. I never really tried to "pass."
I didn't go out of my way to avoid other Disabled people.
But as I tried to make nondisabled friends, I lost contact
with the friends I had made in various hospitals and convalescent
homes. But not with Wendy. Through the years Wendy and I
continued to see each other as often as we could (which
wasn't very often since I lived in Brooklyn and she lived
in Long Island and we had to rely on somebody to drive us).
But we talked on the phone almost every day. Then my parents
moved to Queens which was a bit closer to Long Island, and
Wendy got a car.
I remember she would pick me up and we would
go riding around. Seeing us in the car, no one could tell
we were "handicapped" (that was the word that
was used then). We were two hot chicks, a blonde and a brunette,
out joy riding. Guys on the street would whistle when we
stopped at a light, from other cars some men blew us kisses,
some made lewd remarks. You know -- the kind of behavior
women in the CR groups of the late 60's were calling offensive
and demeaning, even labeling it sexual harassment. We soaked
in every lustful look. We savored every obscene word. I
did feel a bit uncomfortable since I was starting to pay
attention to the Women's Liberation Movement. But I loved
riding in Wendy's car. I thought we were having fun. But
Wendy was doing it to torture herself. "All I have
to do is park, get the chair out and they'll run the other
way so fast!" she would say. "We're both beautiful,
we could have it all, why do we have to be handicapped?
I don't want to live as a handicapped woman. I want to be
a real woman, I want a real life, I want happiness. If I
can't have all that, I'd rather die."
I couldn't tell her "We are real women,
we can have a real life, we can be happy." I didn't
have the words yet. I couldn't tell her that it was our
"internalized oppression" that made her hate her
disability and hate herself. I couldn't tell her that what
made her so unhappy was not her disability but the way society
treated her because of it. "The social model"
of disability had not been formulated yet. The view of "disability
as a personal tragedy" still reigned supreme. We didn't
have the weapons to fight the "better off dead"
attitude. Wendy swallowed that lethal lie --hook, line &
sinker.
And yet the women's movement was already telling
us that "biology is not destiny." Why didn't I
grab a hold of those words, why didn't I use those words
to save Wendy?
I quietly witnessed Wendy's despair. I felt
as if I was back in Riposto. The forces of doom closing
in on both of us, crippled girls. "This is your destiny."
I could see the Addolorata beckoning me. I could hear again
sister Angelica's ominous words "You can never be happy."
We were both 22 when Wendy drove to a Long
Island motel, checked herself in, locked the door and swallowed
60 seconals.
It was 1970. That same year in New York Judy
Heumann would sue the Board of Ed. and found Disabled in
Action. In Berkely, Ed Roberts would soon open CIL, the
first Independent Living Center. The Disability Rights Movement
would soon start to bloom. I still think that if Wendy had
held on a little bit longer she would not have had to kill
herself.
I didn't think I could ever climb out of the
deep depression Wendy's suicide threw me in. But I did.
And I threw myself into the new movement, and I saved my
life.
COMING HOME
"Coming home" -- that's what Disabled
people call the experience of connecting with the disability
community. Cheryl Marie Wade calls it a miracle. We "come
home" after a period of isolation. Some of us may just
not have had the chance to meet other disabled people. Others
might have been avoiding other disabled people, trying to
fit in the nondisabled world, "passing" -- at
great cost. Leslie Heller, who passed for many years, told
me (in a recent conversation): "I had to suppress such
a big part of myself in an attempt to be accepted into a
world that would not accept me anyway. I was left feeling
nonexistent."
"Coming home" can happen at a disability
related event, suddenly finding oneself in the presence
of many Disabled people -- For Anne Finger it was a post-polio
conference: "It was as if I'd been living all my life
in a foreign land, speaking a language that was not my native
tongue," she writes in Past Due.(16) Or you can feel
connected just by meeting one person -- Kate, the protagonist
of Jean Stewart's novel, The Body's Memory, feels "she
has come home" when she meets Sheba, the 'respirator
woman' who introduces Kate to the disability rights movement.(17)
Today Disabled people connect on the internet. Many of the
students in my online disability culture course say they
take the course because they need to "come home."
One of the most powerful ways of connecting is finding each
other shoulder to shoulder in a disability rights action.
None of us in the movement will ever forget our first demonstration,
our first arrest.
IDENTIFYING WITH OUR SISTERS
Of course, Disabled men experience "coming
home" -- Irv Zola's Missing Pieces is a classic account
of "coming home." But for Disabled women "coming
home," goes beyond joining the community. We try to
find ourselves in our sisters, to see other women as reflections
of ourselves. Leslie Heller in her article "I am the
Other" talks about the women in her Disabled women's
group: "With them as mirrors, I began to entertain
the possibility that my value, like theirs, is not diminished
by disability."(18) In "A Different Reflection,"
Hope DeRogatis speaks of Ona, her first Disabled friend:
"I could watch her as I could not watch myself... Her
strength and loveliness were undiminished by a different
body, I could see my own beauty because I could see hers."(19)
Kate, in Jean Stewart's novel, says other
Disabled women "served as beacons" for her. "My
presence , my personal way of being in the world, underwent
a sea change." Jean writes, "It had to do with
how they held their heads. How some women in manual chairs
jumped curbs, practical, preoccupied with getting from here
to there... How they entered rooms full of nondisabled people,
as if they had a right. How, breathing into fat-ribbed respirator
tubes, certain quadriplegic women paused to smile. How respirator
breathing could seem suddenly sexy in a way that dragging
on Virginia Slims never would..."(20)
Oh yes, I remember when, after years of comparing
myself to nondisabled, skinny, longlegged models in magazines,
after years of looking at my naked body in the mirror only
from the waist up, after years of trying to compensate for
what I thought I was lacking, I started really looking at
Disabled women and started noticing how beautiful and strong
and powerful and sexy they were. And I started telling myself
that's how I want to be, that's who I want to be.
WOMEN TALKING
Women know how important it is to "talk."
We Disabled women do a lot of talking. We talk one to one,
and we form Disabled women's groups, following the tradition
of the women's movement groups of the late sixties and early
seventies. Because we know how much we need each other.
Because we know the value of that feminist adage "the
personal is political." Hope DeRogatis, talking about
making friends with Ona, says: "We were overflowing
with things to say to each other, laughing with each other...
interrupting each other with stories and thoughts that were
the same. We finished each other's sentences - words neither
of us had ever spoken out loud before."(21) Feminist
film maker, Bonnie Klein, who became Disabled after a stroke,
writes about connecting with DAWN, the Disabled Women's
Network in Canada: "It is like the early days of consciousness-raising
in the women's movement: sharing painful (and funny) experiences,
"clicks" of recognition; swapping tips for coping
with social service bureaucracies and choosing the least
uncomfortable tampons for prolonged sitting. It is exhilarating
to cry and laugh with other women again. Here I am not other,
because everyone is other. It is the sisterhood of disability."(22)
PERSONAL EXPERIENCE / THE BODY
Disabled British feminist Jenny Morris believes
a feminist perspective can do a lot for the disability rights
movement. "In our attempts to challenge the 'medical'
and the 'personal tragedy' models of disability, we have
sometimes tended to deny the personal experience of disability."
"While environmental barriers and social attitudes
are a crucial part of our experience of disability... to
suggest that this is all there is to it is to deny the personal
experience of physical or intellectual restrictions, of
illness, of fear of dying."(23) Cheryl Marie Wade,
in her inimitable style, recalls how "Even socially,
when it was just us crips together, we never talked about
our bodies, our disabilities, our physical realities; we
talked political action. I started feeling more and more
out of sync with the disability is a social construct point
of view... I was pissed as hell that no matter how many
political speeches I made, my body kept calling the shots."(24)
I remember how pissed I was, years ago, when
my post-polio symptoms really hit me. "What is this?
I'm supposed to be the 'able Disabled,' I'm supposed to
be 'Disabled not sick!' Can't I figure out a way to blame
this pain on society? Who can I demonstrate against?"
Not all bodily suffering is a socially curable
phenomenon. Some physical pain is simply the consequence
of having a body that's made of flesh. All living creatures
know pain. Those of us living with disabilities may know
more than most. I'm beginning to think the Sicilian women
had a point when they talked about a woman's destiny of
suffering: this menopause business sure is no fun.
While writing this keynote, I was reminded
of how not only my physical energy but my mental energy
has decreased with the years. I used to be able to write
all day (and all night if necessary). Now I write in spurts.
Hoping ginseng or ginkoba might help, I went into a health
food store. It was a Saturday and the place was packed.
As I tried to make my way through the aisles, I kept looking
at all those bodies. They were all so fit! So perfect! In
spite of myself, I started admiring these people who took
such good care of themselves. And then I started looking
at the expressions on their faces as they picked up and
very carefully inspected bottle after bottle. And then I
heard the quiver in their voices as they asked question
after question of the equally perfect looking salespeople.
I recognized the emotion that enveloped them: it was fear.
They all lived in fear of losing their perfect proportions,
their precious health. I really felt sorry for them, and
grateful for this crippled body.
This 50 year old Disabled woman's body, that
has known so much pain, struggle and joy.
Again using a feminist perspective, Disabled
women have in recent years set out to reclaim the female
Disabled body. It was looking at Frida Kahlo's paintings
that made Cheryl Marie Wade realize the full value and beauty
of our "damaged and powerful, ravaged and exquisite"
bodies: "The vividness of her pain, her lush, sensual
femaleness. You deny my pain and struggle, then you deny
my beauty and grace."(25)
Disabled artists today are writing, painting, performing
the Disabled woman's body. Melina Fatsiou-Cowan paints magnificently
swirling female bodies with scoliosis. "I used to hate,
loathe my scoliosis... I was told deformity was a repulsive
thing... so I used to think that touching my scoliosis would
be as shocking ...as touching death itself," she says.(26)
Mary Duffy, who was born without arms, makes of her own
naked body a work of art when she stands partially draped
in white cloth, very much like the Venus de Milo. "By
confronting people with my naked body, with its softness,
its roundness and its threat, I wanted to take control...
I wanted to hold up a mirror to all those people who had
stripped me bare previously... the general public with naked
stares, and more especially the medical profession."(27)
FEMINISM AND DISABILITY
Though many Disabled women embrace feminism,
feminism has not welcomed Disabled women. There have been
and still are clashes because our positions on certain issues
are not understood. I've been thrown out of feminist meetings
for opposing selective abortion and, more recently, physician
assisted suicide. In order to throw me out of one meeting,
years ago, they had to carry me out since their meeting
place was not accessible -- and they had carried me in with
such kindness and compassion...
The Disabled woman has traditionally been
left out of feminist theory and feminist analysis. We have
felt that we were an embarrassment to feminists. Bonnie
Klein, attending a feminist film festival after her stroke,
wrote: "I feel as if my colleagues are ashamed of me
because I am no longer the image of strength, competence,
and independence that feminists, including myself, are so
eager to project."(28) Adrienne Asch and Michelle Fine
wrote back in 1988: "Perceiving Disabled women as childlike,
helpless, and victimized, non-Disabled feminists have severed
them from the sisterhood in an effort to advance more powerful,
competent, and appealing female icons."(29)
Nondisabled feminists see Disabled women as
reinforcing traditional stereotypes of women. In reality,
"disabled" in its most negative meaning with all
its bad connotations, has been used to define woman. Historically,
in male dominated cultures, 'woman' has been seen as lacking,
as less than, as "disabled." Aristotle propounded
the notion of a hierarchy with men at the top, of course,
and women one step below -- a step which, in Aristotle's
words, represents "the first step along the road to
deformity." (30) Through the centuries this view of
woman has thrived, culminating in the work of Sigmund Freud.
According to Freud a woman is a disabled man, a castrated
man, a "mutilated creature" destined to waste
her life envying what she doesn't have: that precious penis.
Freud speaks of the woman's lack of a penis as a wound "After
a woman has become aware of the wound to her narcissism,
she develops a scar, a sense of inferiority."(31) My
favorite feminist, Kate Millet wrote in 1970 in Sexual Politics
"A philosophy which assumes that 'the demand for justice
is a modification of envy' and informs the dispossessed
that the circumstances of their deprivation are organic,
therefore unalterable, is capable of condoning a great deal
of injustice. One can predict the advice such a philosophy
would have in store for other disadvantaged groups..."(32)
I wish I could say Kate Millet was thinking
of Disabled people when she wrote that, but I don't think
she was. My nondisabled feminist friends today still fail
to make the connection. When they ask me to explain what
I mean when I say "I don't want to be cured,"
I always answer "The same thing I mean when I say I
don't want a penis." And the immediate response is:
"Oh, it's not the same thing! You really are disabled!"
Yes, I really am Disabled and I have no desire to be non-Disabled.
Just like I really am a woman and I have no desire to be
a man.
But ableist thinking is just too pervasive.
Even the people you really think should, don't get it. Carol
Gill says: "It really rocks people when we so clearly
reject the superiority of nondisability. We're attacking
the old yardstick of human validity--the reassuring bottom
line: 'At least I have my health (all fingers and toes,
ability to walk, vision, mind...)'"(33) People are
just too afraid of becoming ill, of becoming Disabled, of
dying. They cannot believe that we do not 'envy' them what
they value so dearly, what they are so afraid to lose: their
precious health, their able body. Our most progressive nondisabled
friends will support us when we fight for our rights, when
we demand access. But they just don't understand what we
mean when we say we don't want to be cured because we are
"Disabled and Proud."
PRIDE
When you're Disabled you're always being asked
questions (what's wrong with you? How did it happen? And
how do you do this and how do you do that?), always being
asked to explain, to justify yourself. We 're all used to
it. If we're feeling cocky we may give a smart answer (What's
wrong with me? What's wrong with you?)
When they ask us "What do you mean by
Disabled and Proud?" what they're implying is that
we don't have a right to be proud. "How can you be
proud when you're disabled?" It is an insulting question.
Yet we feel the obligation to explain. I sure have done
a lot of explaining to journalists who never hear a word
I say, to colleagues at the New School who don't have an
inkling of what I'm doing there, to nondisabled old friends
who still don't know who I am, and to my own Disabled sisters
and brothers who are not quite there yet. It is always so
difficult to explain what we mean. I always blame the difficulty
on my listeners, of course. But I realize that the difficulty
may be within us. We may not be so sure ourselves that we
have the right to be proud.
Bonnie Klein, at the Disability Pride Day
Rally in Boston, started chanting with the crowd "Disabled
and Proud!" and then: "My throat jammed on the
word mid-chant." she writes "Is this honest? Who
am I trying to fool? It's one thing to accept but another
to be proud. I'm proud of surviving and adapting maybe,
but am I proud of being Disabled?"(34) Obviously not,
not then, not yet.
Laura Hershey is as proud as they come. I
have a button which says "you get proud by practicing"
which is the title of one of her poems. One of her recent
online "crip commentaries" (wonderful weekly articles
posted on her webpage), is titled "What's pride got
to do with it." The commentary answers a question asked
by a passerby who noticed the sign she was wearing at an
anti-telethon protest this past Labor Day. Laura's sign
said "Disabled and Proud." The stranger's question,
of course, was "What does that mean?"
Laura's explanation is beautiful. "What
does it mean to be "Disabled and Proud"?"
she writes, " For me, it means that while everyone
else is making their own unique contribution to the world,
I'm making mine too. It means I can be a lot of things --
a compound of identities, roles, experiences, gains, losses,
feelings, ideas, actions -- and that every piece of me belongs
together. None of my pieces need to be erased or hidden.
And I'll fight the idea -- whether promoted by Jerry Lewis,
or by Jack Kevorkian -- that disability is intolerable and
must be eliminated from the world."(35)
Yet Laura finds it necessary to make this
distinction. She's saying "Disabled and Proud,"
she is not saying that she's "Proud to be Disabled."
"I'm not taking credit for the fact that I was born
with a disability. That was pure chance. Nor do I consider
myself, or other people with disabilities, better than nondisabled
people," she writes.(36)
I probably have said similar things in the
past. Why do we feel we have to? Our gay brothers and sisters
don't make such a distinction when they talk of gay pride,
nor do our Deaf brothers and sisters (who when it comes
to Pride have shown us the way!). They'll say they're Deaf
and Proud and they'll say they're proud to be Deaf. Of course,
it was pure chance I got polio. But do people who say they're
proud to be American worry that it was pure chance they
were born in this country?
It's like we're embarrassed to say we're proud.
For centuries our people have been taught to be ashamed.
Are we so well indoctrinated that now that we're finally
feeling proud, we're ashamed of our pride? I am going to
say it. I am Proud to be Disabled!
You may have noticed that I've been saying
Disabled woman and Disabled people rather than woman with
a disability and people with disabilities. I see nothing
wrong with adjectives, nor with placing adjectives before
nouns. I say I am an Italian woman, -- or much better, I
am a Sicilian woman. Placing the adjective "Sicilian"
in front of the noun "woman" does not diminish
me, unless the person who's talking is a northern separatist
who thinks Sicilians are the scum of the earth. Why should
putting "Disabled" in front of "woman"
diminish me? Unless the person who's talking is an ableist
who thinks I should be ashamed of being who I am. If you
look at the written version of this paper you'll see that
Disabled is capitalized, just like Sicilian would be capitalized.
(And just like Deaf is capitalized.)
I realize that I say I'm proud to be Disabled
the same way I would say I'm proud to be Sicilian. So I
guess I'm being 'nationalistic!' I'm proud to belong to
disability nation. Even though there is no geographical
spot on the map that we can call our "homeland,"
so we borrow from the lesbian and gay movement and say:
"we are everywhere." But:
"If there was a country called Disabled,
I would be from there. I'd live Disabled
culture, eat Disabled food, make Disabled
love, cry Disabled tears, climb Disabled
mountains and tell Disabled stories.
If there was a country called Disabled
I would say she has immigrants that come
to her from as far back as time remembers
If there was a country called Disabled, then
I am one of its citizens."(37)
A man wrote that poem. Neil Marcus. We have
proud men too in this Disability nation. The man in my life
is "Disabled and Proud."
So go ahead, call me nationalistic, tell me
I'm practicing divisive politics, but don't tell me that
my pride doesn't make sense. Really, why is it that when
some jerk says "I'm proud to be an American" nobody
asks him to explain what he means? Maybe we should.
It is only because this is America that people
think you can only be proud of your country if your country
is rich and powerful (and imperialistic and militaristic...)
People who live in poor countries, or in countries torn
by war, where everyday is a struggle to survive, can be
proud too, and they can love their land in a way Americans
will never understand. I love the land of Sicily where I
was born. It's a tough land. It sure was tough for a crippled
girl to grow up in Riposto. Yet I'm proud to come from there.
It is only because this is America that people
think you can only be proud if you have a job that pays
a lot of money, and you live in a big house and drive a
cadillac. Elsewhere in the world people know that it is
in struggle that you learn pride.
I am proud to be Disabled. I am proud that
we are a people that has endured centuries of oppression
-- isolation, poverty, incarceration. That has survived
constant attempts to do away with our kind -- from the ancient
Greeks to Kavorkian. That in the last 30 years has fought
a 'brave,' even 'heroic' battle for equal rights and managed
to make some remarkable changes in this world. Though our
community is more diverse than any other on earth, we come
together so easily, so joyfully. In spite of the indoctrination
we all received to hate our disabilities and hate ourselves
and each other, today we love ourselves, and we love each
other. Today our community is flourishing, even though the
struggle is far from over and most of us are still poor
and discriminated against, and many of us are still incarcerated
in nursing homes. Our people are giving voice to the disability
experience, telling their stories... our people are writing
books, making films, creating beautiful poetry, creating
beautiful art... We are building culture -- Disability Culture.
So, don't we have every right to be proud?
And because we are Disabled women, we have
to break free of double chains. We have to struggle twice
as hard to survive. So, because we are Disabled women, our
pride is even stronger. And our joy is greater when we come
together ( as we're doing at this conference) to learn from
each other, to show each other the way, to share each other's
strength, to delight in each other's beauty.
Do you mind if I do something?
Sister Angelica, I am happy!
And I am proud, Proud to be a Disabled Woman.
Back to Menu
Escape from Shame
by Tammy S. Thompson
This article appeared in Mouth Magazine,
#43, the Escape issue, in July 1997.
Escape isn't a straight shot and it doesn't
always mean freedom. I've tried all my life to escape both
to and from things that I feel but cannot see. I spent the
first few months of my life in an incubator without the
comfort of human touch. I was born three months before I
was due, weighing two pounds and twelve ounces. The upside:
medical technology saved my life. The downside: my retinas
were damaged from receiving too much oxygen. I became legally
blind. At the time, the doctors suspected hydrocephalus,
but they didn't diagnose it until it almost killed me in
my sophomore year of college.
I've spent many years on a mission to cancel
out my disability by frantically stacking up achievements,
hoping that someday I would find that final, magic accomplishment
which would absolve me of the sin of being disabled. Loneliness
and longing for fulfillment have been the constant threads
in my life, motivating countless escape attempts. I guess
I thought that if I were successful enough, I'd escape from
the "less than" feeling that quivers in my guts.
I've felt that my disability is a debt to others that I
could never be powerful enough to repay -- that no matter
how good I am, I will always need others to do things for
me that I cannot do for myself. No matter what I did, I
collided with that hard fact. I couldn't seem to accept
it and carry on without shame. Then one day, riding the
bus, I met a fellow with a disability who was proud. He
was comfortable with himself and his disability. Disability
pride -- wasn't that an oxymoron? I had to find out, so
I got involved in the independent living movement he told
me about.Participating in the Center for Disability Leadership
program brought me up to speed and launched me into the
disability rights movement. My life and my thinking were
liberated. I got connected with powerful, wonderful people
who were also disabled. These disability warriors taught
me a new way to live that frees me from my past.
When I was four years old, I remember boarding
a blue van in the dark of early morning to travel to a school
for handicapped children. Lucky for me, I had a fierce desire
to attend kindergarten with my childhood buddy, Parry. My
parents advocated for me to have that opportunity. I shudder
to think what my life wouldn't be if I had been relegated
to the land of low expectations.
I learned early that being different is painful.
I became a master at hiding my disability. I did not avail
myself of some visual aids because they drew attention to
my differentness. I went to extraordinary lengths to be
the same as everyone else. I could never fully pull it off.
Sometimes I wasn't included in daily activities because
I was different, but, ultimately, I chose to withdraw to
avoid the feelings of awkwardness and shame that rose up
inside me. Recess and gym class made me want to disappear
and die. I couldn't see the jump rope or the soccer ball.
If I played, I heard whispers and laughter, or the thick
silence that goes along with an exchange of looks between
kids. I can see color well, so I "see" by guessing
what things are by shape, color and sound. I don't see faces
unless they're at kissing distance. So I couldn't see those
looks but I knew what they were saying. I began to hate
my body, then physical activity, and finally myself. I remember
boys telling me they liked me, then laughing at me when
I believed them. I learned to be syrupy sweet so that people
would like me. To win friends, I anticipated the needs of
others and ignored my own. If I were nice enough, someone
might like me, love me, protect me. Just now I am beginning
to realize how much this "coping skill" has cost
me and others.
I found temporary relief by escaping. Food,
music, alcohol, and geographical cures worked for a little
while. Food still soothes me in the empty places and music
is an expressive friend; alcohol cut the edge and evened
the playing field -- until I crashed and burned. My geographical
cures gave me hope that life would be better somewhere else.
But none of these things can protect me or give me the comfort
and freedom I crave. I need people in my life who love me
and accept me.
Eighteen months ago, before I learned about the disability
rights movement, I did not want to be associated with anything,
or anybody, that had to do with disability. I would not
align myself with the losing team or the stereotypes I tried
so hard to defy. Today my friends in the movement are teaching
me how to accept my disability and carry myself with pride.
I am finding out that the ways I've learned to protect myself
actually separate me from other people. Trying to appear
non-disabled is a lot of work and it keeps me ashamed and
alone. I've been disabled all my life, yet I have little
idea of how to trust and include others in my life -- let
alone ask for help when I need it.
The grand paradox in all this is that my efforts
to "overcome" my disability have made me "too
capable to be disabled" and still unable to pass for
non-disabled. I can't win if I don't fit anywhere.
Today I strive to accept and honor who and what I am. I
have friends who teach me how to live my life instead of
defending it. I escape the chains that bind me by living
a 12-step program, participating in weekly therapy sessions,
and building relationships with my fellow patriots in the
disability rights movement as we make social change.
In working to free our people, I free myself.
Back to Menu
SHAME
By Josie Byzek
This article appeared in the March/April 2000
edition of Ragged Edge, http://www.raggededgemagazine.com/0300/a0300ft2.htm
Dear fellow citizens who so naively believe
that parents of disabled kids struggle with challenges the
rest of us cannot possibly understand that you tell us not
to judge Richard and Dawn Kelso for reaching the end of
their rope and abandoning their severely disabled 10-year-old
Steven at a hospital in another state:
Go to hell.
Even if the Kelsos didn't have matching BMWs;
even if Richard Kelso weren't a high ranking executive in
a $560 million dollar company; even if the adult Kelsos
did not regularly receive 20-hour-a-day service for their
son, Steven; even if the Kelsos truly did act out of what
they believed to be best for their son; even if every able-bodied
person in this country believes that this was a desperate
act: I don't care. Go to hell. Steven, an only child of
well-off parents, was dumped in a hospital on Christmas
Eve with his toys and meds with a note from Mom.
My God! What must he be going through?
I've been trying to imagine how it went down
that day, what it was exactly that snapped and made them
decide to throw away their only child. Was it a drunken
screaming match between Mom and Dad that eventually wound
around to "that crippled, drooling child that makes
me sick just looking at him. Dawn, I want him out of here.
If you care about our marriage at all, get that retard gone!"
Is that how it went down?
What did Steven think? Could he hear it from
his room?
Or was it quieter?
"Richard, its time."
"What, Dawn?"
"It's time."
"Oh, right. I'll get my coat."
Did Steven realize his parents were taking
him across the state line to dump him like a pillow-sacked
kitten into a cold river?
I spent a day not too long ago with some disability rights
advocates in Erie, PA, who were testifying at a hearing
to get people out of one of our remaining state institutions.
Steve Clark, Mark Boczko and Marge Warner and I sat around
and talked about where we were going, and why.
Steve Clark talked about how he was dropped off at Western
State Hospital when he was two months old. He finally got
out when he was an adult, but it was a struggle.
Marge Warner's father remarried when her mother
died. Her stepmother beat her savagely, raising ugly red
welts and leaving deep scars. I wonder if Marge's stepmother's
friends thought Stepmom a "saint" for "taking
care of that man's handicapped daughter?"
When Marge was 13 her stepmother put her in
Pennsylvania's Warren State Hospital. From there she was
shipped to the Polk institution. Finally, at age 38 with
her stepmother dead, she went to Polk administrators and
demanded that she be allowed to leave.
Mark Boczko spoke openly about how he had
been raped at Polk. Twice.
Conversation wound around to why our parents
put us in these places. They say it's to "protect us."
We're not that stupid.
We tried to figure out the truth. One said
our parents had had no other services back then, that they
did what they thought was best for their child. Julie Prough,
a drop-dead blonde as smart as she is beautiful, said, "That's
not why. Our parents are ashamed of us. They don't want
us."
I hope she's wrong. But I think she's at least
partly right.
One of my first memories of my parents fighting
was when my brother was just a baby. My dad was chasing
my mom around the living room, and my grandmother was screaming
at him. The reason? My brother's six-month baby picture.
My brother has a visual impairment, and my dad thought he
looked too "handicapped" in the picture. (I've
never figured out what he meant by that.) He was trying
to find out where my mother and grandmother had hidden the
picture so he could destroy it.
My college years were spent trying to get
sober -- and get through a bad depression that I had been
in and out of since I was in grade school. Twice I was told
I should be "committed." Twice I talked them out
of it.
During those years I had a nightmare. In the
nightmare, my mother had committed me to an institution.
I cried hysterically, begging her to let me come home. But
she walked out, and I was left behind.
It was only a dream, thank God. But like many
of us who have been disabled since childhood, I have always
known it could be a reality. For Steven Kelso, Steve, Marge
and Mark, it has been their reality.
Others of us just have the good sense to be
afraid.
The Kelsos threw their child away because
of a lack of services? I don't think so. To believe that
is to insult all the good parents who manage to keep their
children at home -- with far fewer than 20 hours of help
a day.
And it is even more of an insult to their
children, who deserve to be loved and treasured.
I think Prough is right about the Kelsos:
they were ashamed of their son.
Steven Kelso will likely pay double for his
parents' shame: First abandoned by his mother, he will now
likely also end up in some institution, serving time for
his parents' hate crime -- while they drive off into the
sunset in their matching BMWs, crying crocodile tears to
a gullible press.
Back to Menu
A Defense of Disability Pride
Marissa Johnson
Marissa Johnson wrote the following in response
to messages on the invisible-disability listserv in which
people indicated they were "offended" by the slogan,
"Disabled & Proud." It was so good, I had
to post it on the website.
"I think I need to weigh in on this one.
My name is Marissa Johnson and my disabilities are Epilepsy
and Depression. I grew up in a family that had no idea what
to do with my disabilities other than take me to doctors
to play the "med game" and try to get me cured.
I didn't even know that the diagnoses I had were considered
"disabilities" and I never had an IEP in school
or did anything related to disability.
It wasn't until I was in college and a friend
of mine got a job at my university's "Disability Services"
office that I started to see disability in a different light.
In my junior year, one of the Disability Services staff
conducted a 10-week "Institute on Disability and Leadership."
I attended and got my introduction to disability history,
culture, community, and issues. That course changed my life.
I subsequently attended a leadership conference for youth
with disabilities in DC and am now the chair of the committee
that plans that conference. My career changed from education
to disability rather quickly.
There was a time when I definitely could not
imagine wearing a T-shirt that says "Disabled &
Proud" and certainly my family still finds it odd and
hard to understand. However, several experiences and people
in my life have helped to transform the way I think about
my disability. I have the pleasure of working with Sarah
at Access Living and of witnessing the changes that take
place in the youth we serve through our leadership and organizing
training. Young people who begin the training with little
or no self-esteem and feel ashamed of a fundamental part
of who they are leave 16 weeks later feeling confident,
at peace with themselves, and ready to take on the world.
This is such an important program and I support Sarah's
fund-raising efforts 100%.
Am I proud of the fact that I sometimes space
out and mumble things (seizures)? Am I proud of the fact
that I feel sad all the time and sometimes can barely get
out of bed? No...not really. But when I wear my Disabled
& Proud shirt, it's not to say that I'm proud of the
things I "can't" do or the difficult aspects of
my disability. What I am proud of is my heritage and culture
as a person with a disability.
I am proud to be a part of a community that
has fought discrimination and societal barriers for decades.
I am proud to know that my predescessors include the likes
of Justin Dart and Ed Roberts who saw something that needed
to be done to improve the lives of people with disabilities
and they did it. People who wouldn't take "no...we
can't make it accessible" for an answer and fought
to achieve the things they wanted to achieve...despite society's
opinions about what they could and could not do.
When I think of who I am and what makes me
disabled and proud, it is the fact that I have role models
and leaders who have shown me that I can do whatever I want,
despite what other people tell me. I am proud to be a member
of a community that strives to make society equitable and
accessible. I am proud to consider Sarah and other members
of our community my sisters and brothers and work together
with them to make positive changes in the lives of people
with disabilities. I am proud to be a part of a movement
that fundamentally values humanity in any shape or form.
I have struggled with discrimination, including
people not considering me disabled because I don't "look
disabled" and people teasing me when I have seizures
or telling me to "just feel better" when I'm depressed.
At the heart of discrimination is society's belief that
if we keep others down, keep them living in shame and fear,
we won't have to share anything with them.
We live in the richest society in the world.
And let's face it, that society values perfection above
all else - the privileged ones in our society are the white,
upper class, size 6, beautiful, straight, intelligent, "happy"
people. If you don't meet that description, you're considered
a threat. No one in that class would want to empower anyone
else because they just might have to share their piece of
the pie with them.
African Americans, Gay people, Women, Immigrants,
People on Welfare, and people with disabilities all face
similar barriers. Do we tell African Americans to "overcome
their blackness"? Do we tell women to stop being women?
No! So why do we insist that you cannot be a proud and confident
person as long as you have a disability? And why does society
believe that it's okay to kill a disabled child because
they would live such a life of suffering?
My disability pride comes from my heritage
and culture as a disabled person. My pride is a result of
a community and movement that I believe in with all my heart.
I am proud to be counted among the ranks of those who wish
to see society treat ALL people equally without regard for
skin color, annual income, gender, or disability status,
and who will work to achieve equality for all.
I am disabled and proud and will gladly wear
my T-shirt to show the world that people with disabilities
are out there and we're demanding equal treatment...and
to try to instill in my disabled brothers and sisters that
same sense of pride in their heritage and history."
Marissa Johnson
Back to Menu
Personal Assistance
and Disability Pride,
Adolph Ratzka
Today we celebrate Disabilty Pride and Dignity.
In order to be proud, though, many of us need personal assistance
services.
I was forced to spend 5 years of my youth
in an institution, because I happen to need personal assistance.
A personal assistant is somebody who gets paid for helping
me with the things I cannot do by myself like bathing, getting
dressed, cooking or cleaning. At that time there existed
no such services in the community. Those 5 years were the
most miserable years in my life.
Today, Irish citizens are still spending their
lives in institutions. Many Irish citizens cannot decide
when they eat and when they go to bed.
It is hard to be proud, when somebody else
decides when you go to the toilet.
It is hard to be proud, when you cannot come and go as you
please.
Without personal assistance services people
like me are forced into institutions. Without personal assistance
services we become a burden on our families.
It is hard to to be proud when you are seven
years old and still need to ask mom to pull up your pants.
It is even harder when you are 40.
Years ago I was living together with a woman.
She helped me get up in the morning, go to the toilet, get
dressed. She did the shopping, cooking and cleaning. She
worked 7 days a week, every week of the month, 12 months
out of the year. I needed her for everything - she knew
I was helpless without her. We were chained together. After
1 1/2 years she left.
On that day it was very difficult to be proud.
Today I live in Sweden, I am getting money
from the state that covers the cost of 12 hours of personal
assistance a day. With that money I can hire the people
I want to work for me. I am the employer, I decide who will
work, when they will work, what is to be done and how it
is to be done. I decide when I get up in the morning and
when I go to the toilet. My personal assistants help me
at my work, they drive me to my meetings, they accompany
me on my travels.
Today I am married. I am not dependent on
my wife for personal assistance. I manage by myself - with
the help of my assistants. My wife and I share the household
work fifty-fifty. I do my share with the help of my assistants.
She does the laundry, I do the cleaning. We share the cooking.
I take great pride in the fact that my cooking is at least
as good as hers.
We soon expect a child and my assistants will
help me to take my part of the practical work that a baby
entails.
Without personal assistance services I would
have been hesitant to marry.
Without personal assistance services we would not have decided
to have a child.
The day the baby arrives I will be very proud.
Thousands of Irish citizens are still dependent
on their families or are living in institutions. For thousands
of Irish citizens life is a spectator sport. To work, to
travel, to fall in love and raise a family is something
they watch other people do on television.
Thousands of Irish people could be proud and
productive citizens, if they had personal assistance services.
