[Nfbc-info] educating hospital staff about blindness, any tips?

[Frida Aizenman]

This is an excellent article. It is worth reading.

Cordially,

Frida

The Braille Monitor

Vol. 37, No. 4 
April 1994Barbara Pierce, Editor

 SOME
  STRAIGHT TALK ABOUT BLINDNESS: REMARKS DELIVERED TO A GROUP OF CALIFORNIA 
NURSES
 by Sharon Gold
 From the Editor:
  Recently Sharon Gold, President of the National Federation of the Blind of 
California
  and a member of the NFB Board of Directors, was asked to speak at three 
continuing-education
  classes for Southern California nurses wishing to renew their state 
nursing
  licenses. She was asked to address two topics: growing up as a blind child 
and
  blindness and the responsibilities of the medical profession. This is what 
she
  had to say:
 Love is a four-letter
  word with a big meaning. If each of us in this room shared our thoughts 
right
  now about love, we would probably all say something about the great need 
for
  more love in the world. Indeed we would do well to nurture the growth of 
love
  among us. However, while we all need to increase our sensitivity or love 
for
  one another, it is important to recognize that we can be cruel to one 
another
  even in our loving. Yes, to speak directly to the point of our discussion 
today,
  love can be a form of child abuse, giving rise to the need to defend the 
child.
 My parents were devastated when they learned that their first-born
  child was blind. Neither my mother nor my father knew a blind person, But 
what
  was even more devastating than the blindness was the way the doctors 
handled
  the situation. They were kind men who didn't wish to upset my parents by 
telling
  them their baby couldn't see. You may be thinking that perhaps the doctors 
did
  not know that I was blind; and, of course, you may be right. However, my 
eyes
  were cloudy because I had congenital cataracts. My mother noticed the 
cloudiness
  immediately and inquired about it. The doctors said that they would put 
drops
  in my eyes, and the cloudiness would go away. In those days mother and 
child
  stayed in the hospital for several days, and each day the doctors put 
drops
  in my eyes and tried to avoid discussing my ophthalmological condition 
with
  my mother.
 As I have already said, these doctors were kind and loving
  men. They meant only good for my parents, and they certainly meant no harm 
to
  this new-born baby. But however shocking and cruel it may have seemed to 
the
  doctors, it would have been more loving and kind to have openly discussed 
the
  actual condition of my eyes and my blindness with my parents.
 You are all probably observing my gray hair and are thinking
  that this happened a long time ago and that surely it would not happen 
today.
  You are right about the long-time-ago part. This event took place fifty 
years
  ago, and I wish it were different today. Sometimes it is. However, there 
is
  still real reluctance to discuss blindness when it strikes a family. The 
tendency
  is still to bypass the subject or to minimize the situation.
 My mother concluded that it would do little good to cry over
  the fact that I was blind. She decided the sooner she and Daddy began to 
deal
  with the situation, the better it would be for all of us. Therefore, my 
parents
  made a conscious decision to raise me as they would have any other child. 
Children
  need to be encouraged, have their behavior molded, and be disciplined. I 
was
  no different.
 But disciplining a blind child can often be a problem if there
  are visitors in the house or if the family is away from home and in the 
company
  of others. Sending a child to his or her room until the identified bad 
behavior
  is over may be acceptable discipline for a naughty sighted child, but it 
may
  strike visitors differently when the child being punished is blind. 
Indeed,
  any disciplinary measures at all may raise severe criticism from third 
parties.

 One evening, when I was very young, my parents had dinner guests.
  It was their custom with me (and later with my sister) to include me at 
the
  dinner table rather than feeding me beforehand and excluding me from 
eating
  with the family and the guests. Mother always set a beautiful table, and 
this
  evening was no exception. I had my place setting, complete with a glass of 
milk.
  However, I wanted something in the middle of the table. Instead of asking 
for
  what I wanted, I took the child's shortcut. Standing up on my chair, I 
leaned
  over the table to reach what I wished to have. In the process I knocked 
over
  my milk, spilling it all over the table and the floor. My mother picked me 
up
  with one hand (as only a mother can do) and swatted me on the behind with 
the
  other while firmly sitting me back down on the chair. As she began 
cleaning
  up the mess, she noticed that the guests were very quiet. It became 
evident
  that they were upset when they voiced their intent to leave because my 
mother
  had punished me for spilling my milk. They reasoned that, because I could 
not
  see the milk, I should not have been punished for spilling it. Mother 
explained
  that I had not spilled the milk because I had not seen it but because I 
had
  been doing something I should not have done--standing on a chair and 
leaning
  over the table to get what I should have asked to have passed. Mother told 
her
  guests that, if I had been sitting properly at the table and had knocked 
over
  the milk because I did not see it, nothing would have been said. The milk 
would
  simply have been cleaned up.
 Many parents have difficulty raising their blind children because
  of the attitudes of others. Peer pressure is powerful at all ages, and it 
doesn't
  cease to exert that power at adulthood or parenthood. Good parents 
demonstrate
  their love by teaching their children self-discipline and by expecting and 
praising
  good behavior. Withstanding the criticism of well-meaning friends and 
relations
  can be very hard for parents, especially parents of blind children. Yet, 
like
  sighted children, blind youngsters need standards for self-discipline and 
good
  conduct, and bad behavior should not be excused away by blindness.
 Through the National Organization of Parents of Blind Children,
  a division of the National Federation of the Blind, and its magazine 
Future
  Reflections, parents of blind children receive support from each other. 
This
  network promotes the notion that it is important to set standards for 
blind
  children similar to those set for sighted ones. Through sharing ideas and 
experiences,
  these parents hope to raise normal, well-mannered children who will grow 
into
  successful blind adults.
 Through its library of Twin Vision© Books, the American
  Action Fund for Blind Children and Adults provides a great service to 
parents
  of blind children as well as to blind parents raising sighted children. 
Twin
  Vision books are children's story books which have been disassembled, 
interleaved
  with Braille transcriptions of the printed text, and reassembled into a 
book.
  The facing page to each print page contains the Braille text. Parents of 
blind
  children can subscribe to this library service and read the Twin Vision 
books
  to their preschool children who can then touch the Braille while the 
parent
  reads. School-aged blind children can read along with the parent. The Twin 
Vision
  books are also wonderful for blind parents who can read the Braille to 
their
  sighted children while they follow along, looking at the pictures and 
reading
  the print text.
 Today we are very aware of child abuse. Doctors, nurses, and
  teachers look for the physical signs and report such symptoms to the 
authorities.
  It is customary to look for bruises or other signs of physical abuse, but 
there
  are other kinds of child abuse, as well, and we are coming to recognize 
forms
  that do not come from a physical beating. The mother who was still feeding 
her
  blind child baby food when he was ten years old was abusing him as surely 
as
  if she had beaten him. He was thin and underdeveloped. His facial muscles 
were
  atrophied. Her excuse for feeding him baby food was that, since the child 
was
  blind, he could not learn to chew. This parent thought that she was 
providing
  tender, loving care to her son when in fact this was a blatant form of 
child
  abuse.
 Similarly, parents who require fewer household chores from
  their blind children than from their other youngsters are also abusing the 
child.
  These lowered expectations damage the blind child's relationship with 
siblings
  and diminish his or her self- esteem. Further the child's development is 
delayed
  because he or she does not learn tasks that are age-appropriate--picking 
up
  her toys or clothes, making his bed, setting and clearing the table, 
helping
  to wash the dishes, carrying out the garbage, helping with the laundry, 
caring
  for the family pet, and assisting with the countless other chores that a 
well-adjusted
  child learns to do growing up.
 Verbal abuse is another type of mistreatment that can be as
  debilitating to a child as a physical beating. Reminding a child of his or 
her
  shortcomings often increases the tendency to make mistakes, eliciting 
further
  parental criticism. Constant exposure to the preconceived and inaccurate 
notions
  of others about his or her perceived limitations can be very harmful to a 
blind
  child's appropriate psychological development. We all thrive on 
encouragement,
  and discouragement stunts our growth.
 All children have dreams. Some are realistic and some are pure
  fantasy. Almost every child has dreamed of being a fireman or nurse or 
doctor.
  Scurrying about the floor, racing to an imaginary fire, gathering up the 
hooks
  and ladders, and putting out a raging fire are all part of a child's play, 
and
  that play translates into growth and development. Similarly, children play 
nurse
  or doctor and cure the worst ailments with the magic resident in the 
doctor
  or nurse's kit. This type of play is expected of sighted children, but as 
soon
  as the blind child starts down the hallway with a toy fire truck, some 
adult
  is likely to squash the fantasy by the not very subtle reminder that, 
since
  he or she is blind, putting out fires would be an impossibility.
 By the way, I am not at all certain that helping to put out
  fires is an impossibility for a blind person. Certainly there are blind 
doctors,
  nurses, pharmacists, and others in the medical professions. Every time I 
decide
  that a blind person cannot do a particular task or job, I soon learn that 
there
  is a blind person somewhere performing that task and doing it as well as, 
or
  better than, his or her sighted colleagues. The National Federation of the 
Blind
  has taught us that with proper training and opportunity we can compete on 
terms
  of equality with our sighted neighbors.
 Toys are a very important part of all children's growing and
  developing. There is a tendency to think that blind children need special 
toys.
  Although I am not suggesting that blindness should never be considered 
when
  selecting toys, I am suggesting that many perfectly fine toys are 
sometimes
  eliminated from the blind child's collection because some adult has 
decided
  that, under the circumstances, they are unsuitable. My mother thought that 
choosing
  a toy was an important part of every child's education and development. 
When
  I was still too small to reach the counter, mother would put each toy in 
my
  hand for me to see so that I could choose the one for us to buy. When I 
grew
  large enough to reach the counter, I independently walked up and down the 
aisles
  in the dime store and carefully inspected each toy so that I could make my 
choice.

 Many times children find their own toys. One day, when I was
  about eighteen months old, I found a ladder that a painter had left 
leaning
  against the side of the duplex in which we lived. Being a curious child, I 
climbed
  straight up it. When my mother discovered where I was, she was fearful 
that,
  if she called, she would startle me. Ultimately she decided to take off 
her
  shoes and socks so that she could quietly climb the ladder and carry me 
down
  to safety without frightening me.
 Another day I found an open gate and rode my tricycle out of
  the yard and into the big world. I was found blocks from home, having a 
wonderful
  time exploring on my own. As you can see, my childhood was not much 
different
  from that of other curious children. Mother and Daddy never believed in 
"can't."
  Mother was fond of saying that "I can't" never did anything, but "I'll
  try" can do many things.
 Mud is always a fine and inexpensive toy. How many mud pies
  do we all recall making as children and eating, too, for that matter? When 
I
  was a child, all milk bottles were glass, and the empty bottles lined the 
back
  steps waiting for the milkman. I added to the fun of making mud pies by 
taking
  the bottles from the step and carrying them to my outdoor kitchen. I 
thought
  it great fun to fill one bottle with water and pour it from one bottle to 
the
  next. However, when a neighbor happened to observe this activity while 
visiting
  my mother one day, she admonished mother for allowing me to play with the 
glass
  milk bottles. Mother's response to her criticism was that, if I were to 
drop
  one of the bottles and cut myself, I would heal. In the meantime I was 
learning
  valuable lessons, including how to pour water from one bottle to another 
without
  spilling it.
 In the early 1940's children were more likely to go out and
  find their own toys. When we didn't have anything to do, we climbed trees 
or
  walked along walls. There were no televisions or electronic games. Today 
toy
  manufacturers look for ways to build what they call educational toys that 
will
  take the place of the coordination we developed from wall walking, tree 
climbing,
  and the countless other things we found to do when we were children.
 Visual toys are also an important part of a blind child's growing
  up. We live in a world in which most people see, and it is important for 
blind
  children to learn that fact at an early age. One time someone sent me a 
machine
  that showed pictures which were in a roll inside the machine. There was a 
crank
  on the top which, when turned, changed the picture. Since I could not see 
the
  pictures, an adult described them to me. I made up a story about each one 
and
  set about presenting picture shows to the smaller neighborhood children. 
This
  was excellent stimulation to my imagination, which needed little 
encouragement,
  and it also taught me much about pictures. However, it also taught the 
neighborhood
  children that blindness made no difference to the quality of the picture 
show
  and the stories that went with it.
 The discussion this afternoon would not be complete if I did
  not talk a little about being a blind adult. Opinion polls have shown us 
that
  blindness is feared second only to cancer. The average person equates 
blindness
  with inferiority and even stupidity. At the office of the National 
Federation
  of the Blind of California we spend much time talking to the adult sons 
and
  daughters of older people about blindness. We emphasize that Mother or Dad 
is
  the same person she or he was before becoming blind. These people have the 
same
  need to do for their children as they did before losing their sight. They 
are
  often eager to pour coffee, cook dinner, and do the countless other little 
things
  that show their love, and they are still perfectly capable of doing them. 
We
  stress that these parents should be encouraged to do for themselves and 
others.
  Even if you simply want to help, jumping up and grabbing the coffee pot 
only
  makes the older parent feel inadequate. Remember that the person without a 
reason
  to get up in the morning has very likely lost the reason to live.
 As nurses and other medical professionals, you are a very important
  part of your patients' lives. Your attitude toward blindness and the blind 
person
  will help determine the quality of the life your patient is able to 
create.
  If you accept and promote a healthy parent-child relationship, your 
influence
  can reinforce the attitude that it's okay to be blind and to expect 
proficiency
  from a blind child. Similarly, you will make the difference with grown 
children
  as they deal with the onset of blindness in their elderly parents.
 Some of you deal directly with blind children and adults in
  hospital settings. We need and desire the same respect other patients 
receive
  and the flexibility and optimism that enable one to get well. If physical 
therapy
  is in order, the blind patient needs the full scope of physical therapy 
that
  the sighted patient would receive. If walking the halls will help a 
patient
  progress, then the blind patient needs to walk the halls too. You must set 
aside
  the presumption that a blind person cannot be expected to do such things. 
It
  will be helpful if you keep in mind the fact that fear often arises from 
accepting
  false evidence that appears to be real, and concluding that blindness 
necessarily
  prevents a person from doing a given task is almost always false.
 I appreciate this invitation to speak to you today, and I welcome
  the opportunity to discuss blindness. As professionals and as individuals 
you
  are important to blind people. Thank you for helping us teach the world 
that
  it is respectable to be blind.
----- Original Message ----- 
From: "Ronit Ovadia Mazzoni" <rovadia82 at gmail.com>
To: <nfbc-info at nfbnet.org>
Sent: Thursday, August 16, 2012 3:16 PM
Subject: [Nfbc-info] educating hospital staff about blindness, any tips?


>        Hello everyone,
> I am working part-time at Santa Clara Valley Medical Center doing genetic
> counseling. I went through employee health at the beginning and was met 
> with
> alot of resistance about my blindness. I offered to do an educational
> inservice for them and they accepted. I have never done an educational
> session for hospital staff before, only for children. Have any of you done
> one of these before? Would you recommend I give hand-outs about blindness 
> to
> these workers? Anything particular I should make sure and talk about? Any
> tips would be very much appreciated.
> Thanks.
> Ronit
>
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