When I was collecting stories for the Amazing Grace for Survivors book, I came across this heart warming story by a friend of a friend who was born blind. Here is her story.
I suppose Melissa would be called a
child in a PVS state these days.
About fifty years ago, a professional called children
like her “vegetables” because they couldn’t do anything for themselves,
and the phrase unfortunately stuck.
Today, PVS stands for “persistent vegetative state.”
child in a PVS state these days.
About fifty years ago, a professional called children
like her “vegetables” because they couldn’t do anything for themselves,
and the phrase unfortunately stuck.
Today, PVS stands for “persistent vegetative state.”
Melissa was certainly not
like the other children in the station wagon which picked us disabled kids up
from all over Oahu, Hawaii, including the outlying areas around Honolulu to take us to
our respective schools.
like the other children in the station wagon which picked us disabled kids up
from all over Oahu, Hawaii, including the outlying areas around Honolulu to take us to
our respective schools.
There are
degrees of disability, and the prejudice between these degrees can be sharper
among the disabled than they are noted among “normal people.” The struggle to be considered as
“normal” as possible can be a vicious, even cruel yoke. “I can play catch,” a
nine-year-old boy with hemophilia said, risking the easy breakage of his bones
and bleeding which may be hard to stop in order, just for a while, to feel like
an ordinary kid.
“I can roller skate faster
than my sister!” said Dawn, who had practiced for months, and counted the
bruises as nothing just so long as her total blindness wouldn’t stop her from
roller skating not only well but faster
than her sister.
than my sister!” said Dawn, who had practiced for months, and counted the
bruises as nothing just so long as her total blindness wouldn’t stop her from
roller skating not only well but faster
than her sister.
But Melissa did none of these
things. She was on “the
bottom” of the disability pyramid.
Those who are thought to be, on the bottom are the little ones which
people let technology weed out by saying: “Isn’t it wonderful we can
perform tests now in the mother’s uterus that reveals disabilities so it can be
terminated?”
things. She was on “the
bottom” of the disability pyramid.
Those who are thought to be, on the bottom are the little ones which
people let technology weed out by saying: “Isn’t it wonderful we can
perform tests now in the mother’s uterus that reveals disabilities so it can be
terminated?”
But someone loved Melissa. Every day, her mother lovingly put her into
the car and kissed her goodbye. Melissa
sat next to me day after day. She never
said a word, or reacted in any way to anything that happened around her.
the car and kissed her goodbye. Melissa
sat next to me day after day. She never
said a word, or reacted in any way to anything that happened around her.
We were picked up in the morning
and driven to our different schools. I went
I to the school for the deaf and the blind. But Melissa went to a school where
very little could be done for the children.
Their disability seemed too great.
Playing with colored balls, watching for reactions to see if things might
be going on in those poor brains, trying to stimulate any response at all —
were great steps forward.
and driven to our different schools. I went
I to the school for the deaf and the blind. But Melissa went to a school where
very little could be done for the children.
Their disability seemed too great.
Playing with colored balls, watching for reactions to see if things might
be going on in those poor brains, trying to stimulate any response at all —
were great steps forward.
I am ashamed to tell you this, but
many times I said: “I’m not one of them! I can count and talk and sing and
… and do lots of things Melissa can’t
do!” What I was really saying was: “I am not so disabled as Melissa,
so I am more of a person than she is.”
many times I said: “I’m not one of them! I can count and talk and sing and
… and do lots of things Melissa can’t
do!” What I was really saying was: “I am not so disabled as Melissa,
so I am more of a person than she is.”
At the root of all this was
fear. What if I couldn’t be
‘normal” no matter how hard I tried?
What if other people would not want my love because I am disabled?
Melissa and the younger children
and I sat in the front part of the
station wagon. In back sat older kids,
mostly deaf children. They had fun
playing games with us younger ones, especially taunting the blind
children, since of course we did not know who had hurt us. I know our kindly driver, Mr. Mayo, felt
badly about all this, but it was hard for him to drive and attend to the
craziness going on behind him at the same time.
and I sat in the front part of the
station wagon. In back sat older kids,
mostly deaf children. They had fun
playing games with us younger ones, especially taunting the blind
children, since of course we did not know who had hurt us. I know our kindly driver, Mr. Mayo, felt
badly about all this, but it was hard for him to drive and attend to the
craziness going on behind him at the same time.
One afternoon, one of the deaf
children took a large wad of gum and smeared it through my hair. This was followed by very hard hair
pulling. I screamed in pain. Mr. Mayo had not seen who had done it, and
the laughter of the gang behind me frightened me. I began to cry hard, shaking and trembling.
children took a large wad of gum and smeared it through my hair. This was followed by very hard hair
pulling. I screamed in pain. Mr. Mayo had not seen who had done it, and
the laughter of the gang behind me frightened me. I began to cry hard, shaking and trembling.
Suddenly, two little arms were
around me. A little hand touched my
cheek. The little hand stroked my hair
and cheek, and the little child who sat next to me day after day, nothing more
than a “vegetable” to those pseudo-professionals, was rocking me in
her arms. It was Mellisa. I was so amazed that I stopped crying. This went on for about three minutes, and
then, gently and tenderly, she touched my hair and cheek again, and went back
into her own little world. I think the
kids behind us were also amazed, because there was silence back there too.
around me. A little hand touched my
cheek. The little hand stroked my hair
and cheek, and the little child who sat next to me day after day, nothing more
than a “vegetable” to those pseudo-professionals, was rocking me in
her arms. It was Mellisa. I was so amazed that I stopped crying. This went on for about three minutes, and
then, gently and tenderly, she touched my hair and cheek again, and went back
into her own little world. I think the
kids behind us were also amazed, because there was silence back there too.
When I had pulled myself together,
I gently put my arms around her too, and we stayed like that for a long
time. Every morning and afternoon that
followed during the time we were together, we put our arms around each other
again for a little while. After this,
all disabled people became my people, and the hierarchy of disability no longer existed for me.
I gently put my arms around her too, and we stayed like that for a long
time. Every morning and afternoon that
followed during the time we were together, we put our arms around each other
again for a little while. After this,
all disabled people became my people, and the hierarchy of disability no longer existed for me.
Melissa taught me that all people,
especially the most disabled, will always be my people. Quality of life
criteria is nothing more than an evil way to justify killing unwanted
people. I learned that if only one
person is denied his or her humanity, none of us are safe, and none of us are
“human.”
especially the most disabled, will always be my people. Quality of life
criteria is nothing more than an evil way to justify killing unwanted
people. I learned that if only one
person is denied his or her humanity, none of us are safe, and none of us are
“human.”
###
Patricia
Margaret Devlin was born in Hawai’i in 1953 before it was understood that
varying levels of oxygen could destroy retina tissue and cause blindness. She was one of the many infants of this time who became blind as a
result. Despite serious health problems, she worked, went to school
almost getting her doctorate, and raised her twin daughters alone. She is fighting her second bout with cancer, and
through God’s grace finds purpose in
offering her chronic pain for others
Margaret Devlin was born in Hawai’i in 1953 before it was understood that
varying levels of oxygen could destroy retina tissue and cause blindness. She was one of the many infants of this time who became blind as a
result. Despite serious health problems, she worked, went to school
almost getting her doctorate, and raised her twin daughters alone. She is fighting her second bout with cancer, and
through God’s grace finds purpose in
offering her chronic pain for others
Patricia, you are blessed that you can express your inmost thoughts, but just because a person cannot do so does not mean they don't have them.
Every human being is God's best gift to the world.
This is Patti Armstrong. I republished Patricia's story from the Amazing Grace for Survivors book, but she does not have access to this blog. Her story reveals that she indeed shares your opinion. The point of her story is that we are all equally human and degree of ability or disability does not change that inherent and equal value. Thanks for commenting.