I recently had dinner with a friend of mine, and he and I got into a debate about the state of race relations in this country. He and I disagreed on race relations issues. What caught my attention is that whenever he disagreed with a point I made he would say, "Well, I have an African American friend, and he says . . ." Then later in the conversation he'd say, "But my black friend tells me…” Finally I got irritated, and I said, "You know one black person who expresses this view, so you're an expert now on what African Americans think?"
There is a tendency in society for people to view the world according to their own experience. While I'm giving my friend a hard time, I think that what he was doing is very common. We look at other people's situations and try to understand them based on our own worldview, our own life experience. I think that happens a lot with blind people. I begin with this thought to say that in trying to prepare yourselves to be the best parents that you can be for your blind children (and all of your children, but in this case for your blind children), you need information - not just information from one blind person, not just information from one professional. Of course there may be individuals who, over time, will become your friends, and perhaps even your mentors. But what will prepare you best to raise your children and give them the very best opportunity for a productive life is the breadth of experience that you and your child have with blind people. Then it isn't that you know one blind person who says this or believes that. You will understand from the perspective of a whole wide range of people.
What do I mean by a wide range of people? One of the things that we talk about a lot in the Federation is the concept that Dr. Jernigan taught us many years ago. He said that the major problem of blindness is not the lack of eyesight, but public misunderstanding about blindness. He said that with training and opportunity blind people can compete on terms of equality. Either those words have substance or they're a slogan. In order to take them from the slogan level to the substance level, they have to be internalized. You have to feel those words inside of you. Do we mean that just a few blind people can compete, or can blind people as a class compete?
Blind people, like everyone else in society, represent a cross-section. Some of us are very bold. When the space shuttle went up with the Louis Braille coins on board, I said I was glad that Dr. Maurer was not going along. He said he would have loved to go, and I believe him! Some of us are very bold. Some of us are less so. Some of us are very academically oriented, some of us less so. As a cross-section of people, either we can do the things in life that we want to do and that others do, or it's a fiction, a slogan. The way we move past the slogan toward making it real is through interaction with one another, with other blind people. So it's important that you be here for this convention. I know some parents in the room are not able to stay for the entire convention this time. But next year, and the year after and the year after, it is vitally important that you come, not just for the parents' seminar, but for the entire convention. Why? Because your children will grow up, and you need to have an understanding of the issues they will face, what the problems are that blind people are collectively working to solve. Your child needs to be a part of that movement from the time that he or she is very little until he or she is an adult.
Here's an example of one of the problems you're likely to face. If your sighted child has a bad teacher, well, he or she suffers through it and mostly can get by, because next year and the year after and the year after there will be other teachers. Your sighted children will have a whole assortment. Some will be great, some will be terrible, some will be good but don't connect well with your child, etc. But very often in today's education system the blind child has a teacher who may or may not be effective, may or may not convey the right attitudes and values, but may be the primary person providing your child's education for years. What do you do about it?
In my mind, part of what we do about it mirrors other aspects of society. For a while when I was a kid I went to the eye doctor a lot. Forty-plus years ago I would go to the doctor, the doctor would look in my eyes and make some notes in the chart, squeeze my shoulder, and say, "I'll see you next Thursday." That was pretty much the relationship we had with our doctors back then. Today that is not the way we interact with health-care professionals. Today we expect to be much more actively involved, not just to take what we're told and assume it's the best information. We can question that information, do some research. I think the same is true with the education of blind children. You need to be as knowledgeable as you possibly can be. How do you inform yourself? There's the Parents of Blind Children publication, Future Reflections. But a good part of what you will learn comes from interacting with other parents, particularly parents who have kids the age of your kids or older, who can tell you about the struggles that they face and the solutions they've found. What happened when their child was excluded from PE? Is that just something you have to accept, or is there a way to integrate your child into PE class? I had a little bit of vision when I was in elementary school, and in PE the coach made me the assistant referee. I couldn't see well enough to be a referee, so what it really meant is he gave me a title and had me stand on the sidelines. Is that happening today? You bet it is! Do you have to put up with it? Are there alternatives? How do you know, as a parent, other than by talking to other parents? Some parents have struggled with school districts and been successful. Others - good, smart, very tenacious parents - have gotten nowhere with their school districts. You need to understand the full range, the collective experience as you advocate for your children.
Another thing I want to say to you is that professionals in the blindness field pretty much all use the same language. They all talk about independence. They all do. And they all talk about your child getting an equal education. The question is, is that a slogan, or is it real? You can determine this by watching the behaviors that support what the teacher is saying.
Let me tell you something that's very common in special education. Teachers will say that if you have a blind or low-vision child and that child has twenty-five math problems for homework, the child doesn't really need to do twenty-five. Maybe doing ten or twelve is good enough. This reduced assignment still shows that the child conceptually understands the material. Anybody heard that? Okay - is that equality or is that a slogan of equality? It's a slogan! Think about when your children get out into the world and somebody's going to employ them. I'm standing here as the employer and your child comes in and says, "Now, Dr. Schroeder, I can do really good work. Conceptually I know this stuff in and out. I'll only do half as much as your other staff, but man, I've got it down!" Am I going to hire him? Well, maybe, if he's willing to work sixteen hours a day and get paid for eight.
That reduced homework assignment is not equality. It's an assumption that what blind people can do is substandard. The professionals who make these assumptions aren't bad people. They aren't trying to do your child any harm. They're trying to do the right thing for you and for your children. But it is up to all of us collectively to look at what is happening on a day-to-day basis and to ask ourselves, Is this really supporting equality? Look around the room at blind people who are working, blind people who have done things in life that perhaps society would not have anticipated. Is your child developing on a path that will allow him or her to be like that? Or is he or she receiving a scaled-down education, a substandard education, and with it, a substandard or scaled-down set of dreams and hopes and aspirations?
Some of what you and your child need is information. Your child needs alternative techniques such as using a white cane, learning nonvisual ways to cook or make a sandwich or whatever. But beyond all that, so much of what we're about in the Federation is an internal confidence, an attitude that says that if you want to do a thing you'll do it.
Right now your child is at a national convention. If your child wants a Coke, I want him or her to feel comfortable to go out into the lobby and walk down to the little gift shop at the other end. I'm not asking whether your child can find the gift shop; that isn't the question here. Many, many blind people could find the gift shop. That's a start, but it's not the end. The question is, does your child feel comfortable doing it? As a sighted person you don't say to yourself, Well, I know I can find it, but oh man, the hassle! This place is round, and there's an awful lot of noise! As a sighted person you might not feel like walking that far, but you don't feel anxiety about going to the gift shop and buying a Coke. That's what I want for your children! Not just that they can do it and come back exhausted, saying, "Wow! I made it through that labyrinth!" but that they're comfortable to say, "Man, I don't like this Pepsi over here; I'm going to go and get myself a Coke!" and not think twice about it. That's what I'm talking about with this idea of living a normal life, doing the things that other people do, having independence be more than just a slogan, having it really be integrated into your child's daily life.
All of us fall into patterns. Part of why you need to be around other blind people is so that you have a chance to challenge your patterns a little bit. There are some things that you do differently for a blind child than you do for a sighted child. That's just how it is. The blind child can't pick up a sheet of paper and read it (unless the kid is totally globally mobile with the knfbReader)! So you read the paper to the child. Does it cross the line into reinforcing dependence, or is it a natural interaction that takes into account the fact that your child is blind?
All children have characteristics. Your sighted children have characteristics. Your sighted children, if they're of elementary-school age, are likely shorter than you are. It might be very natural for you to get something out of the cupboard for your sighted child because the shelf is high up and you're taller than the child is. That's not going to scar your sighted child; that's not going to make him withdraw into himself and say, "I guess I can't do much in life." It's a normal interaction that takes into account a fact, a characteristic of that child.
There will be things like that related to blindness. For instance, suppose I have a spot on my jacket. Sometimes you can feel if something has spilled on your clothing, but sometimes you can't. Sighted people have remarkable vision! I'm just astounded by what they can see! (I'm also astounded the other way, sometimes things that are really obvious they don't seem to notice at all!) Say your child puts on a shirt and the washer didn't get the spot out and you see it. There's a natural interaction because you can see and your child can't see. That's fine. But if that natural interaction takes on a pattern of reinforcing dependency, then it's in your child's best interest for you to challenge it. The ability to challenge a pattern doesn't come from sitting down and reading a book. It comes from being around blind people, seeing how blind people interact.
I want to say one more thing. No matter what your child's age, encourage your child to explore. That is how you get information. I can tell you honestly that if I put a blindfold on you and led you around this hotel I could get you lost and keep you lost for five days! There's only one way to learn a hotel or some other big environment, and that's to walk around. That's the only way! You walk around and you start finding things. When I'm walking with sighted people they weave around things and I miss all kinds of stuff, so the only way for me to learn is to explore on my own. Encourage your children to explore! You know these things, but you need to know them at the core. You need to know them until they're integrated, reflex, part of your natural day-to-day reaction to new events and new situations.
Let me close by saying this: fifty thousand members of the National Federation of the Blind, fifty thousand blind people, see your children as our children - not as our biological children, but as the children of our community. We want them to have the greatest opportunity in life that they can have. Some of us have had access to tremendous opportunities for training and education and employment, but others of us have not. We want each of your blind children to benefit from the things that we have learned collectively and the changes we are making together. Here at convention don't hesitate to approach people and talk to them. We're more than happy to be of any help that we can be. With professionals, listen to them. Learn from their experience, learn from their advice. But whether you're talking to another parent or to a professional or to an everyday ordinary gripey old blind man like me, measure what you hear against the belief system that has to underpin everything you do. Does what I recommend promote development and independence, or is it reinforcing and institutionalizing dependency?
I wish you the very best. I'm glad you're here. I look forward to meeting all of you, and, hopefully, to meeting all of your children.
About the Author: Fredric Schroeder gave the above keynote address at an annual conference of the National Organization of Parents of Blind Children at the convention of the National Federation of the Blind (NFB). Schroeder is the first vice president of the NFB, he is the president of the NFB of Virginia, and he is also a research professor at San Diego State University. He has worked with kids and adults, people all across the age spectrum.
Originally published in Future Reflections, Winter 2010, this article may have been edited, retitled, or reformatted for inclusion on the NOPBC Website.