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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