Our Family's Response to Blindness

Our Family's Response to Blindness

Future Reflections September- December 1983, Vol. 2 No. 5
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OUR FAMILY'S RESPONSE TO BLINDNESS
A Panel Discussion from the July 2,1983 NFB Parents Seminar
BARBARA CHEADLE: Let's begin with the introductions.
Dr. John Redwine is a family practitioner
and the parent of a blind child. He is from Sioux City,
Iowa, and he has three children. It is their middle
child, William, who is four years old and blind. They
were here last year at convention and our Parents
Seminar and I understand they did some juggling of
schedules to make sure they could appear this year. So
we are very pleased to have them.
Next, I'll introduce Ruth Ireland. Mrs. Ireland is quite
a lady. She is here from Nebraska and she has three
grown children who are blind. They are all here and
they are all successful. She can tell you about what it's
like to go through it all and have the satisfaction of
having her children make successes of themselves in
the world.
Next to her is Steve Benson. Steve is blind. He is also
the president of the NFB Affiliate of Illinois. He will
share with us some of his experiences of what it was
like to grow up as a blind child and how his family
responded.
And then next to me is Mr. Frank Smith who was just
elected as an officer in our Parents Division. I think
during the election process you heard some things
about Mr. Smith. His son (as you know, all six of his
kids are here) who is blind and fourteen years old is
also sitting up front.
I'd like Mrs. Ireland, I think to start out with a few
comments. Mrs. Ireland will you give a few comments,
about your family's response to blindness and your
perspective now.
MRS. IRELAND: OK, well, that's a big order to say,
"our family's response" since I come from a very large
family and the response was very different from
different people. Different people have different ideas.
attend public school. We had just the same problem
you have, didn't we?Blindness is something you don't
accept until it's forced on you. Well, that's one of the
ideas that is hopefully changing. There is nothing
wrong with blindness, it's just something you have to
handle.
I guess what Dr. Jernigan just said a while ago is
probably, in my- thinking, one of the most important statements that anyone could make. Did you hear him
when he said that for a parent, helping that child to be
successful should be the most important thing in that
parents' life? And, that's what it was to us. Our
children were of prime importance in our young life
and in the new years of our marriage.
BARBARA CHEADLE: You have had three blind
children. Can you tell us if they were alike in general
personality and abilities?
MRS. IRELAND: Well, if you have three children,
you have three children, don't you? Just as different as
they could be. The oldest was a real squawky baby. Oh
my, always squawking. And you get kind of irritated
with that, but you love your child and you find ways
around it. Second child -- calm and collected -- really
a easy-going baby. The next one was kind of a mixture,
but a very quick moving child, you know. "Jumpy,"
practically jumped your arm off when you were carrying
the baby. The oldest one was question-question
question, and the next one was listening and absorbing,
and not so many questions. The next one was kind
of a mixture. But, you know, three different kids, three
different personalities.
You know, it makes me really pleased to tell you who
my children are because I like to brag about my kids.
Do you? My oldest is Curtis Willoughby. Now the
second one is Ramona Walhof, and the third was
elected president of your group today, Susan Ford.
We didn't accept the idea that the children were blind
until they were ready to attend school and could not
Curtis is an electrical engineer. Now if I m stretching a
point here, I'm not quite sure, but I think maybe he was the first blind person to be a graduate electrical
engineer in the United States; setting the pace for a
few others since him. Ramona is the director for the
Idaho Commission for the Blind and at this point a
somewhat frustrated director, I'm told, because she
has lots of hard work and she thought that this was
going to be coasting. Susan was just elected, as I said,
your president of the Parents Division and she's a
mother at home, also working for an agency with blind
adults in St. Louis, Missouri.
MRS. CHEADLE: You know there is a lot that goes
on between the preschool years up to the point where
your children are out in the world on their own, doing
their own thing. How do you get from point A to point
B? What one kind of principle, I suppose, did you
operate on that you think that worked?
MRS. IRELAND: OK. Push 'em out! (laughter) Now,
really, a child needs to be often pushed to do some of
the things they are slightly afraid to do, don't want to
do. I think that loving them while they are at home -- while they are tiny -- and pushing them away from
you when they are older is perhaps one of the most
important things you can remember with your child
that helps them to become independent. It's almost too
easy to over-protect. Many people -- parents -- tell me
that when they see their little one trudge off down the
street to kindergarten that they weep. Not me, boy, I
was proud to see my kids able to go to kindergarden! I
thought that was great. That was a goal and we were
able to do it. Maybe that's what we did almost
unconsciously; set goals and then cheer when the child
reached it.
I think pushing them away from you is a very
important part if you have given them the basis -- the
love and attention and information -- that they need
first.
MRS. CHEADLE: I think I'd like to go now to Steve
Benson, who will give us a different perspective again.
Steve grew up as a blind child and I think it's
important for us, as parents, to understand that
perspective. You know, when you are a member of a
minority group -- let's say blacks -- and you have
children, you know what it's like to go through what
your children will go through. You understand the
kinds of situations and problems and prejudice they
may face. When your child is blind and you are
sighted, you don't have any of that perspective and
you really don't know quite what to expect for your
child. That's why I think it is particularly important
for parents of blind children to get to know blind adults
-- and not just one or two -- but as many as you can so
that you can get the perspective to know what your
child may be thinking and feeling and how you can
best help them. So, Steve Benson, would you tell us
some about yourself and perhaps some comments
about things you think parents should know.
STEVE BENSON: Thank you, Barbara. I was born
in 1941 in Kewanee, Illinois, a farming community in
the western part of the state. The family discovered by
the time I was about a year-and-a-half-old that I had
congenital retinitus pigmentosa. My mother had had
very limited education, but she was wise enough to
know that in the community in which I was born there
would be no real opportunity for suitable education.
So, she took me in tow and she moved to Chicago
where, at that time, the school system was respected as
being quite good and having a good program for blind
children. I went to regular kindergarten and didn't get
into a program for blind students until I was in first
grade. Now, understand that I had quite a bit of vision
at that time. Don't remember what amount in terms of
acuity or fields, but I saw quite a bit. I saw colors and
buildings and could read print -- sort of. And I think
that's KEY. I'll touch upon that in a moment.
My mother and the rest of my family had the same
attitudes about blindness that the general public has. I
suppose if my mother had been employed (by that time
we were a single parent family) in an occupation other
than the one in which she was, things might have
turned out differently. She was manager of a large
rooming house. I think there were about 60 apartments.
And because of that, she could not oversee my
activities in life as closely as she might otherwise have
done. In some respects, that was good. She was close
by if I needed her (it's helpful for any kid to have a
parent or some adult to turn to when it's needed). But
because of the responsibilities imposed upon her by
this managerial position, I had pretty much free rein.
It gave me the opportunity to get involved with my
peers (all of whom were sighted) and learn (although I
didn't realize it then and perhaps didn't realize it for a
long time after that) that blind people CAN compete on a basis of equality with their sighted peers. I did all
the things that all the other kids did -- the good and
the bad. We got into as much mischief as any other
group of kids and I had my hand in all of it.
We used to play cowboys and Indians, and there was a
building in my neighborhood where the porches of the
first floor apartments were up about five or six feet off
the ground and there was a good deal of space under
there. We used to use that as a cave when we were
playing cowboys and Indians. Well, one time we
decided that we were going to go on an outing of some
sort and, of course, when you go out camping as
cowboys and Indians you have to prepare meals and
in order to prepare meals you have to build a fire. So we
built the campfire under these porches. Well, as I said,
I had my hand in it. I certainly helped build that fire.
And the parent of one of my friends saw us and took
his kid home and pretty much broke up our camp
outing. All of a sudden, we saw this kid in the
backyard with his father and with a stack of book
matches about two feet high. And his father sat in the
yard with him all night until he struck every single
match. It was a great lesson for all of us, and
particularly for me. It made me realize that, even at
that age, we had certain responsibilities that we had to
assume for our own behavior and for others behavior
as well. I guess I've taken that kind of thing to heart for
a long time.
As I said, I had some vision as a kid. In first grade they
put me into what was then called a Sight-Saving
Program. Later it became Sight-Conservation Program;
and now it would be called a Low-Vision
Program. I didn't know what blindness was. Hadn't
the foggiest idea what blindness was. Didn't know
what my eye condition was or meant. My mother
didn't explain it. Perhaps she didn't have the full
grasp of it. What she did not understand -- I fear
sometimes still doesn't understand -- was the nature,
the character of blindness. What blindness is. What it
is not. I was perceived by her, and described by her, the
rest of my family and my peers, as being "half-blind."
You think about that one for a minute.
But I went through the first four-and-a-half years of
my education as a "low-vision student." Trying to read
print, trying to use vision I didn't have. The doctors
who treated me through all those years, and the
teachers with whom I had contact had the same
attitudes about blindness that my mother and the rest
of my family had. Only at that time I didn't understand
it. It was something to be avoided. It was
something now to be dealt with squarely. The doctors
and the teachers said, "Look, we've got to have him
use his vision as much as possible so his life will be
fully enriched." Well, I don't know too many of my
friends who have been blind (totally blind, that is)
since birth whose lives haven't been enriched because
they've been blind all their lives.
I moved into what was described to me, at the age of
ten, as Blind School. By that time my teachers had to
write all my assignments out in large print. I don't
know what my reading speed was, but it was abysmal.
Shortly after I began reading Braille my reading speed
was several fold faster, and my achievements academically
were several times better than they had
been during the first four-and-a-half years of my
education.
One of the things that I encountered all through my
education (and I recall, even as a child, thinking that it
was most peculiar) -- we were told (and many of you
have probably been through this same thing) that
because you're blind, you have to be better than
anybody else academically. It posed a kind of pressure
and a kind of responsibility on all of us that was
unrealistic. It was really unfair to all of us. All of my
peers -- all of the kids that I went to school with -- grew up to be fairly successful. But I often wondered,
how much more successful some of us might have been
if we had been allowed to grow and be like other kids -- and not have this weight of trying to be better than
other kids. What all of us decided, by the time we were
seniors in high school, was that they were trying to
make us function like "sighted people." What we really
wanted to do was function like ordinary human beings
who happened to be blind.
I think that each of us, whether we are partially blind,
or totally blind, have a responsibility to make people
understand that blindness is not a crippling, overwhelming
tragedy; that all of us can certainly succeed
commensurate with our intellectual and physical
capacities, and that's no different at all from an
ordinary sighted person. Thank you.
MRS. CHEADLE: Thank you, Steve. Before I move
on to the next panelist, Steve said something I'd like to
make a comment on, talking about having partial
vision and low-vision aids. Our child has partial
vision, he has about 20/200 near vision and 20/100 far
vision. He uses his vision quite well for some things.
He may use a visual aid for some things in the future.
We would certainly encourage it. What we would
discourage, and I think this is what Steve was saying,
is using aids because you fear that alternative blind
techniques are always inferior and that, for your child,
the best thing is to always appear "sighted" as much
as they can. When you base your decisions for low
vision aids on that sort of attitude about blindness -- upon fear of blindness, upon a belief that all sighted
techniques are superior to all blind techniques, then
you are in trouble. If, however, you look at your child as
an individual and you are able to determine what
kinds of things are reasonable to be done visually or
with a visual aid -- and it is constructive -- you do it.
If, however, there are other things that should be done
with an alternative technique (such as the use of the
cane or Braille) then do it. Our own son will be starting
kindergarten next year. He will be learning both print
and Braille. We don't know yet which will be his
primary mode, but we want him to be comfortable with
both.
STEVE BENSON: Barbara, I forgot to mention that
I didn't meet a blind adult until I was about 11 years
old and I was in a boy scout troup. And that blind
person, I guess in a lot of ways, would not be described
as a blind person to whom all of us could look for
guidance; a person whom we could follow and identify
with and emulate. If you have a blind child, it's a good
idea to get that child in a situation where he meets and
has more than passing contact with a blind adult -- someone who is doing something -- not just sitting
and accepting the traditional roles that blind people
have been asked to assume.
One of the things that we were told when we were kids
is that we were SPECIAL children. And I'm afraid
that a lot of my peers (and me too) took that to heart
and a lot of us felt that because we were SPECIAL that
the world owed us something. It doesn't work that
way.
And one of the things I tried to stress is that my mother
did not, or could not because of her job responsibilities,
overprotect me. And I think that that is something we
all have to be very careful about in terms of raising
blind children.
MRS. CHEADLE: Thank you, Steve. Dr. Redwine, I
would like you to touch on what kind of a role blind
adults have played in your life and in your son's life up to this point, and what you might see in the future.
DR. REDWINE: Alright, as Barbara said, I'm a
family practitioner in Sioux City. Actually, our son
isn't quite four. My wife corrected me on that. Sometimes
I can't even remember my own birthdate. But he
actually is a kind of precocious three, so I guess we'll
give him four.
He was born while I was still a resident in a family
practice training program in Sioux City. I'd like to give
you a little of my perspective because I had to do a lot of
gear-shifting, not being familiar with blindness any
more than any other physical maladies of which I
have to deal with every day -- cerabal palsy, mental
retardation, many other things that many of us have
varying attitudes about. And all of a sudden I was
confronted with -- what we felt then -- a significant
defect in our second child.
We didn't discover it until the second day of life. My
wife had called me the night after he was born and
mentioned that it looked like there might be something
in his eyes. I dismissed that because a lot of newborn
babies have a little matter in their eyes; we really don't
think too much about that. And after all, the physician
who delivered him hadn't really noticed anything
either. The next morning I did a kind of a routine
examination and I noticed that his pupils were white.
In the course of my training we were told about white
pupils and what it might mean. There are many
diseases that can present that way -- including some
that can be fatal, including malignant tumors of the
eye. As soon as I saw that, I had to step back a couple of
feet; you can imagine it was a bit shocking. As it
turned out, he had bilateral cateracts, a number of
other eye anomalies -- including mycropthalmia -- and subsequently, a number of other problems with
the eye. He has very limited vision now. One eye sees
almost nothing. The other is less than 20/200. He's so
young right now we can't really measure that.
Anyway, as soon as I noted this problem, I noticed
that one of my advisors in residency was close at hand.
I had him look at my son and he confirmed it, yes this
child does have a problem with the eye. He didn't know
that it was my son, unfortunately. He said, "I think
maybe you ought to get a consultation and have one of
the pediatritions look at him." Then walked away. So,
I was standing there, trying to decide, "Now what?" I
did have an opthomologist come in later and he
confirmed our suspicion that there was a severe
problem with the eyes.
To make a long story short, that led to a number of
trips to Iowa City -- sometimes as many as twice a
week. Now that's a pretty long trip. Fortunately, I
happen to be a pilot, so I had it a little easier than a lot
of people I've known since, making the same kind of
trips. After about 18 surgical procedures, general
anesthesia and a number of consultations, we finally
found that my son's only limitation -- if that is what
you call it -- is blindness.
First thing we did -- I wanted to learn about blindness.
And I guess I was very fortunate. I got steered into the
NFB at that time. That's kind of what I want to leave
with you. I was just out grasping for anything. I
wanted to find out, you know, what is blindness; I
wanted to meet some blind adults. I think that's very
important for parents of blind children to do. And I'm
not sure if other parents of blind children feel that way
or not, I just happened to want to inform myself a little
bit more and I met the right people, I guess. It just so
happened that one of my patients was blind. I think a
lot of you know this gentleman from Sioux City,
Richard Crawford. He happens to be a stock broker.
He's also my broker, incidentally, and I'll leave that
for another day. Anyway, Richard is quite a dynamic
person and that really helped us a lot.
And then I started learning a little bit more about the
NFB and I sent off for a collection of Dr. Jernigan's
speeches. As you all know, those are very enlightening,
thrilling, and inspiring. I was, to say the least, very
impressed. I guess that started me on my trek dealing
with blindness and, of course, our association with the
NFB (which, in my case, has been fairly brief, now
only about three years).
At the present time we are getting well into a preschool
situation. Actually, he's been in a preschool
with sighted children. Next year he will be attending a
school where he will be learning some blind techniques.
I have given him a cane. I had varying
attitudes about that. You can imagine a three-year-old
with a cane. He used it right, oh, about a tenth of the
time. The other time he beats on his brother with it.
(laughter) So, as it turns out our second son, William
(who is blind), is by far the most aggressive of our three
sons. Like I said, he is a little bit precocious, extremely
outgoing, and I think he's probably going to show his
other brothers up. I'm not sure that we expect any
more from him than any of the others, but he's sure
starting out that way.
MRS. CHEADLE: Thank you very much, Dr.
Redwine. Hopefully we can get into the situation about
canes with young children later. We've had experience
with that, too. We've found it pretty much just like
learning to use any other utensil -- like a spoon or a
fork. Our five-year-old son still tries to make airplanes
out of them or stab his brother. Canes are not much
different, I guess.
Frank Smith, would you give a final presentation and
sort of wrap things up for us.
FRANK SMITH: Thank you very much, Barbara.
The impact of blindness on our family, like, I think,
most of you and in most of your situations, was
profound. Ours is a bit different than you've heard
described here this morning in that I went blind after
my wife and I already had two children and that was a
great and profound thing between us. Fortunately, we
are both college graduates and my wife a trained home
economist, which, as it turns out was very good
planning on my part, (laughter) And I am an educator.
So, I had gone blind, had to rearrange my lifestyle
substantially, and then went through an intensive
training program at the Idaho Commission for the
Blind.
Then we found out about a blind child up for adoption,
so we -- my wife and I -- went into the parenting of a
blind child voluntarily and with great intensity and
love; and we have tried to continue that. It has been a
substantial experience.
I'd like to, if I can, kind of deal with four areas. The
impact of blindness on our family can be summarized,
I believe, in four parts. Number one: Institutions.
Immediately we were faced with the institutional
problems. The first time we let our blind child play in
the front yard, five neighbors called the welfare office.
Schools. We started investigating schools and found
our state school for the blind to be in terrible condition
academically, administratively; their ideas the best
thinking of the 18th century, (laughter) For instance,
the prevailing attitude there about Braille was that,
"Well, we give the students here a choice as to whether
or not they want to learn Braille." And I asked, "Do
you then also give them a choice as to whether or not
they'll study English or mathematics?" As it turned out, yes they did! It was terrible. There were children in
that school -- fully functional sighted children -- but
the school was so regressive academically that they
could not transfer to any other school in the state. And
so we went to that battle and now in Idaho it's safe
for blind children to participate in that program. We
were fortunate, however, to live in a city that has its'
own program, and yet we had to fight that institution
as well.
The second category is internal family life and what it
did to the children we already had and the children
that followed. And that's an interesting thing, too. A
child who has blindness always gets the attention.
The people want to take his picture; newspaper reporters
want to put his name in the paper; at school,
he's the special kid and the others kind of get left out.
That's something we've had to guard against carefully;
to make sure that each of our special children get
the special attention they need, and that Ric is included
as one of those special children. That sometimes
is extremely difficult to do -- to find the work
necessary for him to make as much money as the other
kids do with paper routes and mowing lawns and
those kinds of things -- to have equality of chores and
those kinds of things. The internal family situation is
something you have to be on continually -- be thinking
about.
The third area that we dealt with, and Steve dealt with
this very well, I thought, is what you do about the
prejudices that exist and how that's affected our
family. We lived just a few short blocks from the school
when our boy began kindergarten. He could go on the
arm of one of his siblings, (two others preceded him -- he's the third child). That was fine, except Ric began to
manipulate his siblings with his blindness (and I'm
sure every kid tries this -- whatever you got you use -- right?) He'd refuse to go. He'd say, "I'm not going to go
with you kids." And so the girls, (both our older
children are girls) would say, "Well, we've got two
choices, we can either stay here and protect him and be
late for school -- be in trouble, or we can go on to school
and leave him here and risk the wrath of the neighbors."
And they knew what the wrath was -- a
common subject in our home. Ric enjoyed it; I think
you can ask him yourself but my perception was he
enjoyed it. But this presented quite a problem. The first
time, they decided to leave him. I remember my
daughter coming home and saying, "The people down
there don't understand." A neighbor had called the
school, told them that Ric was sitting on the grass in
front of their house and what were they going to do
about it? The principal, unthinking, I'm sure, went to
her classroom, opened the door and yelled, (or at least
spoke loudly across the entire room) "Your little
brother's out there on the street. Go take care of him!"
Anyway, those kinds of things taught our family a
great deal about dealing with prejudice; about the
human factor that exists in our society, and we have
been forced to deal with it.
The fourth category in Ric himself. He's a fine young
man. He is now fourteen or is it fifteen? I'm like you,
Dr. Redwine. He'll soon be an Eagle Scout. He does
work -- chores and those kinds of things -- responsible
in church matters, in civic affairs.
We have to make certain that he gets to look at
everything there is to look at (he's totally blind.) We
were coming through Cheyenne yesterday, and out in
front of the place where we stopped to eat there was a
stylized coach. And so we took a minute to make sure
he could examine and understand what that historical
conveyance is, what it was used for and how it worked.
That is critical -- we have to take time out to help them
get up close enough, and touch and understand those
kind of things.
That's at least my perception of the operations that
we've found to be critical in our family response to
blindness.
Because of length, much of this excellent panel discussion
had to be deleted. Tapes of the Parents Seminar,
which includes a complete recording of the panel, are
available from the NFB national office. See "Seminar
Tapes" under HEAR YE! HEAR YE! for details.
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