Growing Up Blind

Growing Up Blind

Future Reflections Fall 1990, Vol. 9 No. 3
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GROWING UP BLIND
by Jan Bailey
[PICTURE] Jan Bailey
Editor's Note: The following article is reprinted
from the September, 1989, Braille Monitor.
The following remarks were made at the parents'
seminar conducted May 19, 1989, in conjunction
with the convention of the National Federation of
the Blind of South Dakota. Jan Bailey is one of the
leaders of the NFB of Minnesota and works as a
counselor for the rehabilitation agency in that state.
As you will note, she also has remarkable parents.
It is not difficult to understand why Jan Bailey has
grown up to be such a well-adjusted, sensible person.
Her parents certainly deserve much credit for
employing practical good sense and acting on their
conviction that their little daughter was, when all
was said and done, a normal child. Meet Mr. and
Mrs. Bailey as the South Dakota parents and
teachers did. Here is the tribute their daughter paid
to them:
I am the fourth of nine children, and prior to my
birth, my parents had very little knowledge about
or exposure to blind people. I once asked my
mother how she learned that I was blind. She told
me that she took me for a check-up when I was
four or five months old and mentioned to the
doctor that I did not appear to look at things. He
examined my eyes and told her that I was blind.
Afterward, my mother got on the streetcar to go
home and suddenly began to panic. She
wondered what she would do. For a split second
she considered putting me down on the seat and
leaving me there. Then, she remembered a blind
man she had known. He had led a very normal
life. He was married, had children, and held a job.
She decided that if that was possible for him, then
it would be possible for me.
This anecdote illustrates my belief that it is
desperately important for parents of blind
children to have contact with capable blind
adults. We can be role models for your children
and can help you as that blind man helped my
mother. The National Federation of the Blind is
an excellent resource for parents because our
membership is made up of thousands of blind
people who are leading normal lives.
Like many parents, mine went from doctor to
doctor trying to have my sight restored. Part of
the problem was that all of the facts about my
blindness were not known at that time. The experts
did not all recognize that my blindness was
caused by receiving too much oxygen in the incubator.
Finally, when I was about a year old, my
parents took me to a renowned specialist in Salt
Lake City, Utah, The doctor examined me and
then told my parents, "Quit going to doctors.
There is nothing that can be done for your
daughter's eyes. She will always be blind. Take
her home and treat her just like the rest of your
children."To the best of their ability, they did just
that. One of the first discoveries my parents
made was that I was afraid of a number of things.
I disliked anything fuzzy, I did not like loud
noises, and I was terrified of the grass. My mother
just kept exposing me to fuzzy objects, and one
good thing came out of the phobia before I was
cured of it. I had developed a habit of throwing
my empty bottle out of the crib every night. Since
they were made of glass, each night the bottle
broke. My mother decided to remedy this situation
by wrapping my bottle in a diaper and putting
rubber bands around it, but I would have nothing
to do with it. I was now afraid of my fuzzy bottle,
and I never drank from one again. My mother,
however, was persistent and kept exposing me to
soft, fuzzy objects, and I soon outgrew that fear.
Since that time I have met a number of blind
children with phobias, and I often find that their
parents give in, removing the feared objects from
their vicinity. My mother theorized that some of
my fears developed because I did not see others
around me handling objects. She also concluded
that when I went to new places and heard noises
I had never heard before, I was frightened because
I couldn't associate the sound with anything
I recognized. She kept exposing me to the
things I was afraid of, explaining them and
making me touch as many of them as possible.
Her theory was that most babies and small
children are attracted by what they see. They
want what they observe others using. She made a
point of taking me everywhere and making me do
things. She says I would have been perfectly content
to sit in a corner and play, but she would not
allow me to do so. She, my father, or one of my
brothers or sisters would make me play with
them.
Once my father had accepted my blindness, he
decided to order some literature about blind
children. He received a book in the mail that said:
"Put your blind child in a cardboard box in a dark
room. Your blind child is very fragile. Let your
child explore the box and then the room." My
father threw that book away and told my mother
that if that was what the experts had to say on the
subject, he figured he could manage on his own.
He said common sense told him that was the
worst piece of advice he had ever received.
When I was two years old, I suddenly stopped
talking. I had spoken a few words, but then I quit.
After several days, my father said that he'd had
enough. He went over to the high chair where I
was sitting, picked me up, and sat me down hard.
"Say Mama," he said. I said it. Then he picked me
up again and sat me down hard and said, "Say
Dada." I said it, and from then on I had no more
difficulty talking.
At around the same time, my father told me that
he was going to show me where things were in the
house. He said that I could not be running into
them and that I must learn my way around. He
took me through all of the rooms and showed me
where everything was. Then he said, "Now, when
I tell you 'Keep your eyes open,' you'll know that
I mean to keep your feelers working and your
smeller working and your ears working. It would
sound funny if I said that, so you'll know what I
mean when I tell you to keep your eyes open."
A short time later I came running into the dining
room from the kitchen where I had been playing.
I hit my forehead hard on the dining room table,
fell down, and began to cry. My mother jumped
up to comfort me, but my father told her to let
him handle it. He went over, picked me up, gave
me a swat on my back end, and said "Now, don't
you remember, I showed you where that table
was. You can't be running into things. Next time,
keep your eyes open." My mother told him she
thought he was being too hard on me, but he said
I had to learn. I soon stopped crying and went
back to playing. A few minutes later, I came
running into the dining room again. My father
said that you could hardly have put a hair between
my forehead and that table before I
swerved. I never ran into the table again.
As I mentioned earlier, I was terrified of the grass
when I was a young child. Each time my mother
went out to hang clothes, she took me with her
and put me down on the lawn. I always crawled
over onto the cement or gravel, preferring that to
the grass. Eventually my father told my mother
that he was going to do something about the
situation. He took me out to the back yard and
proceeded to roll me around on the grass. I began
to scream, and the neighbors came running.
They told him that he was cruel, but he ignored
them. He took me back into the house and told
my mother not to say anything more about the
grass. I pouted for a few days before coming to
my mother one day and asking for my hat and
coat. That meant I wanted to go outside to play.
She helped me to put on my things and watched
me as I went out. I went over to the grass and
cautiously extended my toe and touched it. I
waited for a second and then explored it with my
foot. Soon I was rolling around on the lawn and
after that had no fear of grass.
When I was quite young, I remember hearing my
mother tell someone that one day she had gone
to the store with my father, my brother and
sisters, and me. A woman was giving out samples
of cheese and crackers. She asked if we would
like some, and my mother said we would. The
woman proceeded to give us each a cracker.
When my turn came, my mother told her that I
was blind and just to put the cracker into my hand.
The woman began lamenting about how awful it
was. My mother simply said, "You don't have to
feel sorry for her; just give her the cracker." As
young as I was when I first heard this anecdote, it
still told me that my parents did not want others
to pity me and that they wanted me to be treated
like everyone else.
My father has often told me that when I was
small, I had some rather strange ideas. One day I
handed him a chicken bone from which I had
eaten all the meat and asked him to put some
more chicken on it. Another day I asked him to
lift me up so I could touch the sky. On such
occasions he tried to explain the true nature of
things so that I would not continue to have misconceptions
about my surroundings. He did have
quite a time, though, making me understand that
I couldn't touch the sky, because he always made
a point of letting me touch things in order for me
to learn about them.
Once I wanted to touch an elephant at the zoo.
My father persuaded the zoo keeper to let me go
into the cage and touch it. He didn't want to give
me preferential treatment, so he persuaded the
poor keeper to let my brothers and sisters go in
also.
When I was quite young, a woman from the welfare
department who had learned I was blind
came to visit my mother. She showed my mother
a large wooden shoe and some pieces of cloth
with buttons, buttonholes, and snaps on them.
She tried to persuade my mother that she needed
to purchase these things to teach me to tie my
shoes, button my dress, and snap snaps. My
mother told her that first, she didn't have the
money to buy those things, and second, she didn't
see any need for them. She said that when I
needed to learn these things, she would teach me
using my own clothing.
When I was ready to go to kindergarten, I announced
that I wanted to learn how to zip my
jacket. I told her that I didn't want to have to ask
the teacher to do it for me. I was to go to kindergarten
at noon, and I pestered her all morning
until I finally learned how to zip that jacket.
In the first grade I began to learn to read. I was
very anxious to master this skill because I had
heard some talking books, and I wanted to read
just like the readers on the records. One day,
however, I came home from school in tears and
told my parents that my teacher had said that I
would not be allowed to check out library books
while in first grade. My father could not understand
this and so decided to phone the principal.
Neither the principal nor the superintendent
would overrule my teacher. So, my father called
her directly. He tried calmly to persuade her that
I should be allowed to check out library books.
Finally in exasperation, he said, "Do you have any
children?" "No," said the teacher. "Well," he
retorted, "I have six of them, and I know that
when children are anxious to learn, you shouldn't
discourage them." But the teacher wouldn't be
moved, so my father told me to go and talk to the
librarian. She asked me if I knew what a little
white lie was. I told her I didn't. She said that it
was a lie that wouldn't hurt anyone. She then told
me to tuck a book under my coat and bring it back
when I was finished reading it, and she would give
me another one. I secretly read library books all
during first grade.
Then there was the matter of my walking to
school. I announced one day when I was six or
seven years old that I thought I should be allowed
to walk to school since my brothers and sisters
could. Moreover, I wanted to walk by myself. I
did not have a cane; back then children didn't use
them. My father said that he would show me the
way to school, and I could go by myself. After a
couple of weeks, I again announced one morning
at breakfast that I wanted to walk to school by
myself. My father replied that I had been doing
so. "No, I haven't," I said. "You've been following
me." He admitted that he had been, but he
promised that that morning he would not. I could
walk to school all by myself.
That night, I came home in tears and told my
parents that the superintendent had come out to
meet me at the driveway of the school when he
saw that my father was not following me. That was
not the end of it. A few days later my father got a
phone call. "Mr. Bailey," the superintendent
said, "You are causing a problem in our school.
You are allowing your daughter to walk to school
by herself. She has told the other students about
it, and now they want to do the same thing." I
should point out here that I was attending the
Washington School for the Blind in Vancouver,
Washington, but I was a day student. There were
many other day students in town, and it was their
parents who had complained. My father refused
to comply with the request. He told the superintendent
to tell those parents that they could raise
their children the way they wanted to, and he
would raise his the way he wanted.
At the age of seven or eight, I told my father I
wanted to roller skate. He told me that he would
take me out and put a pair of skates on me and
take them off again, once. If I could get them back
on, I could go skating. I don't suppose he thought
I would be able to do it, but we went out and sat
on the steps. He showed me one time how to
clamp the skates on, how to use a skate key, and
how to buckle the straps. After he removed the
skates, I put them back on myself. Then he told
me I had some boundaries. I could go around the
block. If I wanted to roller skate, I had to stay
within my boundaries. I skated for hours. That
night, the neighbors complained about it. They
told my father that it was dangerous and that I
would hurt myself. They said it wasn't safe for me
to go skating around the block by myself. Again,
my father ignored their advice. He told them that
if I hurt myself too many times, I would give up
roller skating. I did fall down repeatedly. In fact
that first day, my legs were bleeding badly when
I was through, but I persisted and soon rarely fell.
I also rode my tricycle around the block -- another thing the neighbors didn't approve of.
Soon, however, I wanted a bicycle. I worked hard
to master the skill, but I soon tired of falling off
and gave it up. I guess my father's theory was
right. When I hurt myself enough, I made my own
choices about what I would and could do.
At age ten or eleven, I became a Campfire Girl.
Each year after that my sister and I went door to
door selling candy. She went down one block, and
I went down another. One year we sold enough
candy to earn a campship, which meant that since
both of us planned to attend, our parents would
have to pay half the cost for each of us. After we
had successfully sold all of the candy, my
Campfire leader told my parents that I would not
be allowed to attend camp because I was blind.
They pointed out that my sister could use the
whole campship. My father would have none of
it. He told the Campfire officials that if I was good
enough to sell their candy, then I was good
enough to go to their camp. He suggested that
they let me come to their camp, and if I caused
any problems, he would come and pick me up. I
went off to camp and had a great time.
When I was twelve or thirteen years old, I told my
mother I wanted her to teach me how to iron. She
said that I could not do so because I might burn
myself. I recognized that she believed my blindness
prevented my learning. This made me angry.
I went to my father and tried to get him to intervene,
but this time he sided with my mother. One
day when they had gone downtown, leaving my
older sister in charge, I saw my opportunity. I told
her that if she would show me how to iron, I would
press all of her clothes. When my parents
returned home, there I was, ironing. They never
said another word about it.
We moved to Minnesota when I was twelve.
There I attended the Minnesota Braille and Sight
Saving School until I was a sophomore. That year
I took half of my classes at the public high school.
The next year I told my parents that I wanted to
go to public school. Since we lived in Faribault, where the Braille School was located, the public
school denied me entrance. They did admit a
partially sighted student. However, they said that
I would not be able to read the books in their
library, and that I would use all of my energy
trying to find my way around the school. I would
be too tired to study. I had gone to Minneapolis
the summer after my sophomore year to a
rehabilitation center to learn how to use a cane.
So I took a day off, returned by bus to Faribault
by myself, and went to call on the Superintendent
to plead my case. He refused to see me. The
school district took the position that since the
schools for the deaf and blind were in Faribault,
they did not have to let disabled students attend
public schools. This was before the passage of
Public Law 94-142.
I wrote to my state senator and representative,
my United States senator, and to the governor of
the state. But they all wrote back to say that they
were sorry but my problem was out of their jurisdiction.
Since my parents had very little extra
money, they could not afford to hire a lawyer. I
wish I had known then about the National
Federation of the Blind. When I was going
through that struggle, I felt very alone. I didn't
know that other blind people had similar
problems.
My parents heard that a Catholic school in
Faribault (Bethelehem Academy) had enrolled
deaf students since the public schools would not
admit them either. My father and I went to
Bethelehem Academy and persuaded the principal to admit me. My parents had eight children
at the time and did not have the two hundred
dollars for my tuition. That summer my mother
went to work in the corn canning plant to earn
enough for my tuition and uniform, and in the fall
I entered Bethelehem Academy, where I was on
the honor roll.
During my sophomore year in college I came
home and told my parents that I wanted to move
off campus into an apartment with a friend. They
said that they would not allow me to do so, and
despite my many arguments, they did not relent.
When I returned to school, I wrote them a letter
reminding them that they had always taught me
to be independent and giving them many reasons
why I felt they should let me move into an apartment.
My mother wrote back and said that
anyone who could think up that many arguments
and present them so eloquently should win the
point. They relented and let me move in with my
friend. When I graduated from college, my
rehabilitation counselor encouraged me to go to
graduate school to become one myself. I resisted
doing this because I wanted to get a job in social
work, for which I had been trained. I think in the
back of my mind I also wanted to know for a
certainty that I could compete in something other
than work with the blind. Five years later I left
Las Vegas where I had been working in a nursing
home as a social worker and returned to Minnesota.
I heard about a job opening in the
Rochester district office of Minnesota State Services
for the Blind, applied for it, and was hired.
I decided to take that job because I knew that
there are many blind people who have not had
good opportunities, and I wanted to have a hand
in making some changes in the rehabilitation
system.
I realize that I was fortunate to have the parents
I had, who taught me early in Life that they had
high expectations for me and that I could live a
normal and productive life. That is my hope for
you today: that you will have high expectations
for your children and that you will let them know
you believe they can succeed.
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