In
another life, I worked as a domestic violence counselor and advocate for
women disabled and victims of domestic violence; or women who were disabled
as a result of the violence their partners inflicted on them. Part of my
job was to go to the shelters, the police academies, the judges and DAs
and even the victim advocates to educate them about additional needs those
with disabilities and to educate about the societal views of people with
disabilities, especially those of us who use wheelchairs for freedom.
I
spent several years of study to look behind the "curtain" and understand
the phenomena to explain it best when I was called out to lecture about
disability issues and rights. Many things come to play here. We don't want
to hear about domestic violence or child abuse. These are important social
issues that the feminist movement is leading the way to open up the doors
and let women get away, to give women voices, to teach the judicial system
that the forms of violence can and are deadly. We turn our heads to the
child being brutally spanked and grabbed by the hair in the grocery store
because somehow we feel its best not to get involved. We clutch on to the
lethal ideal that parents know what's best for their children and we have
no right to interfere has caused many injuries and deaths.
We do not want to look at and really soul search
about some issues because they may trigger things we would rather deny.
But almost every person I have spoken to in the course of my 10 years in
the field - including 9 semesters of teaching a class about child abuse
and neglect at a college - has told me that violence occurs to someone
in their family or in their neighborhood; their church or their circle
of friends. It is finally being spoken about. We have begun to listen to
the children, we have started to make laws that make hospital personnel
report suspected injuries that could have led to a horrible statistic in
the news.
How can we (especially as women) believe that women
are treated like shit in their own homes and still feel safe? How can
we hear about those families where the woman is often beaten so badly that
the victim has sustained head injuries, loss of hearing, paraplegia or
quadriplegia -to name very few of the cases of women I worked with who
had become disabled by the perpetrator.
What does this have to do with wheelchairs, you
ask? What does it have to do with being invisible while waiting for a
bus or given the "poor little thing" look in peoples' eyes when they see
us? It cannot be explained simply but I will let you know what I learned
after years of study about how people view disability this way and why
they tend to lock people out; literally on many occasions when we can't
even get access through the door.
People have many layers of consciousness. One of
the deeper layers tells them that, when they see us, they can be in our
place in a split second of an automobile accident or a trip to the doctor's
office to find out the results of the tests. They are an inch away. It
makes them look at their own vulnerabilities. In the cases of seeing children
with disabilities, it is the fear that a family's next child could be born
with a disability. It is deep in their minds but it has always been there.
Another reason is something called "The sins of
the fathers." We come from a Puritanical background in this country from
a strongly enforced caste system or a world based on the class of a person
condemned the human to a life with no rights and no explanation about a
reason for the denial of those rights in the Christian tradition. Again,
it is ingrained so deeply that I found many people deny it who had come
to hear me lecture about understanding people with disabilities and inability
to provide services - our need to find cause and effect. We believe (again
this goes way back in the Judeo-Christian tradition) that there must be
an answer, even if God does not reveal it until after death. It must then
be the sins of the fathers. Somehow they had committed such a sin that
they are being "punished" with the burden of caring for a child who had
special needs.
I know of no one who has not looked up to the sky
and asked "Why me, Lord, what did I do to deserve this?" Theologians have
never been able to explain it and the only way the human mind can address
it is that it had to be the fault of someone! Ah, The sins of the
fathers. Our society lives in a cycle of denial and blame in order to attempt
to make sense of tragedy. I have heard mothers say that their children
are given to them as a burden to show their faith in God - just as Job's
faith was tested.
I know I have been on a soapbox here;
but I do not apologize. I spent years trying to wake people up to their
denial and their "blame the victim" way of rationalizing pain and sorrow.
Just look at the inability to accept it in personal lives! Christopher
Reeves still believes he will walk. We create prosthetics that cause pain
and months if not years of getting used to using them. We can't see photos
of ourselves if our legs or hands don't appear without that haunting "amputee-anxiety"
creeps up from our sub conscience. Darkroom workers close their eyes while
in the dark to make certain their sub-conscious doesn't believe we are
blind (our number one fear in disability).
We try to mainstream our hearing impaired children
by implanting a device in their brain that helps them hear sound in shrieks,
guttural throaty sentences, and inordinate sounds of high pitched tones
so that we can believe that it will make the child more like "us." The
deaf community tells us horror stories about being "punished" for being
deaf through so-called speech therapy, hours and hours a day so that somebody
else can understand them or ridicule the way they talk. The truth is that
there IS a deaf community, a wonderful group of people who communicate
completely with sign language, talk on the phone through their TTY, and
demand that services that are available to you and me are also available
to them (like a pay phone with TTY keyboard)
We try to find out if a child might be disabled
by testing and ultrasound early in the pregnancy so the couple might have
the option of "therapeutic abortion" if their baby doesn't seem "perfect."
These people are often the "pro lifers" who can justify it with the "imperfection"
clause -but not allow the same justification the rape, incest, or under
women under 18 who cannot mother a child. Our rich country has thousands
of children needing homes because they were born disabled and given away
to find "better families, more able to cope with the nasty secret."
Our society is unreasonably vain and competitive.
Perfectionists spend years creating a (fill in the blank) so that they
can prove themselves The Best. We tell our children that there is actually
a difference between "winning" and "losing" or "successful" and "failure."
For God's sake, we are a race of human beings who refuse to age, refuse
to look different, refuse to be themselves (What will the neighbors think?).
Somehow they justify their secret of giving away their disabled children
like they were a sack of old clothes left out on the porch for the ARC
truck to "take these eyesores away."
People with disabilities are the beautiful flowers
found in an alpine meadow. We are the special crooked smile in an endearing
face. We give the love to others that they can never find in themselves.
We are the butterflies. We are the newest voice demanding our rights, the
right to simply go to school, find a rest room we can transfer in without
asking anyone for help or getting continuous UT infections by using catheters.
One of my favorite disability rights pins says:
WE DEMAND THE RIGHT TO PEE.
I've not experienced as much unconditional love
from a son to his mother as when my 35 year old cousin with Down's Syndrome
assisted his mother to remain at home as she grew weaker and weaker from
arthritis and later, cancer. She would not have had the dignity of being
able to die in her own bed with her children all around her reading a verse
from the Bible as she passed on. -had it not been for his compassion and
care for his mother. My uncle, her husband, was blind and could tell us
kids the most amazing, visually detailed and beautiful stories about growing
up in the Big Horn Mountains in Wyoming. He was one of the strongest father
figures I had, and I got from him humor, compassion, and a way of looking
at the world that no one else could have given me.
We are the ones who keep the world filled with
love and creativity. Our gifts are numerous as well. I was given the opportunity
to study - in depth - what I wanted to learn when my mother gave me assignments
after I was thrown out of school for "disrupting the classes" and being
a bad example because I could attend school 1 to 2 days a week and always
maintained an A average (bad influence on the other children, I was told.)
I have the chance to take the time to learn what
bird makes that sound, where they will nest, discover the wildflowers in
our meadow, look for patterns in the clouds, play with my dogs and
(yes, even) ducks and geese.
I study what I want and when I wish to; I follow
an idea around for days sometimes, researching and understanding that there
are more that two sides to an issue; often no one even knows what the other
has in common - too busy finding ways to build walls between each other.
I learn artists, study their art, find their histories,
dream of the brush strokes. I am given weeks to immerse myself in some
passion or another: Chinese artifacts and cricket boxes, mud men and Hunan
carvings, Yixing clay pots, cloisonné. I greet guanyin and the spirit
of compassion and androgyny that the hundreds of years of wear has shown
on her small stone bust each morning, as I look out the window while the
ducks bathe and battle in their icy ponds.
I rediscover books with yellowy pages, I pick up
the guitar and make horrible mockeries of blues, darken the brilliance
of songs I love, discover the sound one chord can make when I finally am
shown its hidden secrets. I play records from 1942 and dance and giggle.
I learn to forgive.
Gratitude! You, who are beginning to educate yourselves
about disability rights; and you, my dear family of women with disabilities,
are getting closer and closer to the top of that list.
In another life, I worked as a domestic violence counselor and advocate for women disabled and victims of domestic violence; or women who were disabled as a result of the violence their partners inflicted on them. Part of my job was to go to the shelters, the police academies, the judges and DAs and even the victim advocates to educate them about additional needs those with disabilities and to educate about the societal views of people with disabilities, especially those of us who use wheelchairs for freedom.
I spent several years of study to look behind the "curtain" and understand the phenomena to explain it best when I was called out to lecture about disability issues and rights. Many things come to play here. We don't want to hear about domestic violence or child abuse. These are important social issues that the feminist movement is leading the way to open up the doors and let women get away, to give women voices, to teach the judicial system that the forms of violence can and are deadly. We turn our heads to the child being brutally spanked and grabbed by the hair in the grocery store because somehow we feel its best not to get involved. We clutch on to the lethal ideal that parents know what's best for their children and we have no right to interfere has caused many injuries and deaths.
