Future Reflections January- February 1984, Vol. 3 No. 1
by Joanne Fernandes
Editor's note: The following article is an edited version of a presentation given by Joanne Fernandes at a Parents Seminar in Louisiana in the spring of 1983. Joanne is now the very able, very dynamic president of the National Federation of the Blind of Louisiana. Joanne has a Bachelors degree in Elementary Education and a Masters degree in Guidance and Counseling. She taught fourth-graders in the public schools for a number of years before becoming a full-time mother/homemaker. Husband, Joseph, has a PhD in Chemical Engineering and teaches at Louisiana Tech University in Ruston, Louisiana. They have four children, and I understand another one is on the way.
When you think of socialization and the teenage years, the first thing you think of is dating. And I think deep down in our hearts a lot of us wonder, "Gee is my son or my daughter going to be able to go out there and date?" And I think this is an important question that the children themselves ask.
I think one of the first questions that comes up is, "Should I date a blind or a sighted person, or should I marry a blind or sighted person?" And I think there tends to be a thing, well, a blind person probably has to date a blind person but they ought to marry a sighted person. What I always seemed to hear is that the only person they could get to date is another blind person but they need someone that is sighted to marry so they can have someone to take care of them the rest of their life. My experience with that -- and I am sure when you think about it you will agree -- that eye-sight is not the way to choose your spouse. There are religious views, personality, general value systems, just common interests -- anything but sight -- that you ought to base the choice of a dating partner or a marriage partner on. The main consideration, I feel in choosing a date or a spouse, is the spouse's or the date's attitude toward blindness. And that is really the crucial issue in the whole choice factor. I have dated both blind and sighted people and I happen to be married to a sighted husband. Susan here is married to a blind husband and so we have it from both perspectives.
I found that when I was in high school I didn't date at all. I thought of my blindness as a real tragedy. I thought of myself as an inferior person and deep down I thought that I would be helpless and dependent. When I was growing up, I used to cry myself to sleep at night, wondering what was ever going to become of me. I knew that eventually I would go totally blind.
I have retinitus pigmentosa, and I mention that because there are a number of you in this group today whose children do have retinitus pigmentosa, and a number who have it yourself and a number of you who also have partially blind children. And what I'm telling you are some of my personal experiences, but they are very common truths. (I know because) I have compared my experiences to other people in similar situations and we have all experienced the same sort of things.
OK, so when I was growing up, as I said, I used to cry myself to sleep wondering what was going to become of me. I was scared to death of going totally blind. I was ashamed of my blindness and I tried to hide it. I would never ever talk about it with other people. The last thing in the world I wanted to do was to tell anybody that I couldn't see or to be any different. You will find this when your kids hit junior-high, high school age. The last thing in the world they want to do is be different and stick out in a crowd.
We were talking at lunch, and I remember this happened to me a lot. The teacher would say, "If anyone can't see in the room, just raise your hands and we will move you up to the front." Well, I'd be the last person on earth to raise my hand! I'd stick my hands deeper down in my pocket and hope no one had noticed. I felt that it would not be respectable -- it would be shameful -- to admit that I couldn't see. The other kids would make fun of me and they wouldn't accept me if I did that. So, I went around like this, and I bluffed my way. I know by talking with some of you parents, your kids are doing the same thing right now. They are trying to bluff their way, even some of the totally blind kids. I don't know what we thought we were trying to cover up, or how we were bluffing it, but we sure tried, I'll tell you.
I remember wondering what other people that were sighted thought about in their free-time, because my thoughts growing up as a child --my free-thoughts -- were always consumed with, "Am I going to be able to find the car?" "Am I going to trip down stairs when I go out with my friends?" "Am I going to make a fool of myself?" I had to be constantly under that pressure (and your children are too) -- constantly under that pressure of worrying if I'm going to see things or not see things, am I going to make a fool of myself or not? And I certainly couldn't talk to anyone about it. I couldn't ask for help at all.
And also, I wouldn't use alternative techniques because that would be admitting that I was blind. I would never use a cane, never wanted Braille, I was ashamed of it, see? I was just totally inefficient. I couldn't see, I wouldn't use any alternative techniques, I wouldn't ask for any help.
So, I went on like this and I never had any dates in high school. And the secret to why I never had any dates in high school was my attitude. After I got out of high school I went to an adult rehabilitation center that was run by Dr. Jernigan, who is the president of the National Federation of the Blind. I went to this place and I was surrounded by the attitudes that we are telling you about today -- surrounded with the National Federation of the Blind philosophy toward blindness.
And when I left the Orientation Center I went back to college and I had all kinds of dates. I looked the same. I had the same basic personality, I acted the same way. My interests were still the same, but suddenly I started having some dates. I had dates with blind guys and I had dates with sighted guys. Now, what made the difference? The difference was the change in my view of myself. It made a world of difference! I suddenly felt confident of myself because I had some alternative techniques that I could depend on. I was freed of this obsession of worrying about "seeing" and worrying that I was going to make a fool of myself. I could laugh at it. I had a sense of humor over it. I could talk about it freely with people. I could ask for help if I needed to.
So I went on and dated and an important thing was when I met my husband. I met him in the back pew of church, actually. He came up and asked me what my cane was for (and I have met several people who have met their husband's that way). And so I started talking to him about blindness, he was very impressed that, you know, here was someone who was willing to talk about it and feel confident about it. And so we started dating and slowly, over our dating relationship, he began to take on the view I had.
And that is something that I always suggest that when your children start out dating, is to feel free to talk about it with their dates -- not try to hide it and bluff it -- cause then their dates are just going to think they are fools, you know because they will bump into stuff and they will wonder, "What is wrong with this person?" So the first thing, I think, is to talk to them. Talk openly, answer their questions. All their dates are going to have some questions about blindness. Having a sense of humor helps, again, to talk about it in perspective and put it in its rightful place and then go on to other things that you have in common with the date.
So my husband accepted it, he understood where I was coming from and he had no problems with it. Then he started saying, "Well, Joanne, I think you're fine and I believe all this stuff, but don't use your cane when we go out on a date. You know, just keep your cane at home because I don't want anybody, you know -- my friends -- they just won't understand. And my family, when you go meet them, kind of hide your cane. You don't have to bring it out right away you know -- they won't understand -- they'll wonder well, 'Why am I dating this blind girl when I have all these other people to choose from?" Basically he was trying to tell me he was ashamed of me. He hadn't fully accepted it. He was going through what I went through as a teenager.
Well, by then I was pretty aggressive and I just said, "No, I'm taking that cane with me, and either they like me as I am or that's it. I'm not going to revert and bluff it out again." And it worked out fine. I took the cane and his friends accepted it and my attitude and there was no problem at all. But again, by the time your child is a teen-ager they need to develop this positive attitude, then they need to work at educating the people around them.
One thing that also happened was that when I got to the stage where I was very open and free about accepting my blindness, my friends came up to me and they said, "Joanne, we are so relieved that you have changed your attitudes about all this and that you are so free to talk about it now and so open about it." They said, "You used to just drive us crazy. You weren't bluffing us at all. We worried about you, but yet we couldn't offer help." They said, "There was a tension between us based on that. It was never quite the true, free friendship that it should have been." When your children get older, discuss these things with them. Tell them about these kinds of stories and maybe they will see the importance of it.
Another question your children will probably ask is, "Can I ever get married? Can I raise children?" And the answer to that is, "Of course they can." I've had four children. All of us here that are blind have children. There is a family back there with five children. Of course you can get married and live independently and raise children. To cement that, you might have them meet some competent blind adults so it isn't just somebody telling them, but they are actually seeing it.
Another question that they might ask when they start dating is, "Is my eye condition hereditary? Will I have blind children?" And again, this is a personal thing. You are going to have to talk to experts about it, and find out and then tell your children. If there is a possibility of inheritance, it is up to them to decide. My particular eye condition is hereditary. There was a chance -- though none of my children happen to be blind -- that some of them could have been blind. My husband and I discussed this before we had children and we decided that blindness is not a "big deal." There are many other things that I would not want my children to be born with, but blindness was not one of them. I felt that if anybody could raise a blind child competently, it would be myself. I had led a full and rich life and done everything, so why couldn't my blind children do the same? And so to us, it was not an important consideration. Of course everybody wants their children to be as perfect as possible, but if it meant children or no children to us it was not a crucial issue.
I just want to leave you with one closing story. When I was at a rehabilitation center, the director of that center, Dr. Jernigan, would invite legislators and important people to his house to dinner and he would also have some of us students up there just to have them meet blind people and see what the program was all about.
And so one day I was up there and Mrs. Jernigan asked me to go around and fill everybody's coffee cup. And I said, "OK, but I really don't think I want to do this." I said, "What if I go and spill coffee all over these important legislators? I'll probably end up making a fool of myself." So when she wasn't looking, I asked this other girl that had more sight than I, she was standing next to me; I said, "Listen Marge, why don't you go fill those coffee cups, because I really don't want to." And so the night passed.
The next morning I got called into Dr. Jernigan's office and he sat me down and said, "Joanne, I hear you would not fill those coffee cups last night."
And I said, "Well, no I didn't really want to fill those coffee cups. I would have spilled it all over the place and I let Marge do it. She could see more than I could."
And he said, "Joanne, do you really believe the philosophy that we are teaching you here? Do you believe that you can grow up and be a normal, independent, self-sufficient, blind person?"
"Oh, yes," I said, "I believe that. I am going to go on to college and become a teacher and raise kids. I know I can do that."
And he said, "But Joanne, you wouldn't fill those coffee cups last night."
And I said, "No, I wasn't going to do that."
And he said, "Joanne, do you realize that life is made up of a series of little things, and if you start saying 'no' to filling coffee cups, you'll start saying 'no' to the next thing, and the next thing, and the next thing? And pretty soon, you're going to be sitting there dependent, and helpless and you are not going to be what you want to be. You know, you cannot say 'no' to the little things in life."
And that lesson always stuck with me. Even now, it is so easy as a blind person to take advantage of your blindness and let somebody else do it. Our basic laziness kind of sets in on us, and it is so easy -- even in my marriage now -- to let my husband jump up and do things. It is easy to let them. But if you do too much of that, and take advantage of that blindness, you are going to be sitting there helpless and dependent and not achieving things.
You parents have to push your children to get out there and do these "little things" and not do them for them. Because, if you think of your daily life, it is made up of a series of little things and you can't say 'no' to them.