Future Reflections Winter/Spring 1997, Vol. 16 No. 1


Defeating The Demons Of Doubt

by Julie Hunter

[PICTURE] Lauren and Julie Hunter

Editor's Note: Julie Hunter is the Treasurer of the National Organization of Parents of Blind Children and the President of the Parents of Blind Children Divison of Colorado. Julie gave the following speech at the state convention of the National Federation of the Blind of Missouri, April 12, 1997. The speech was an overwhelming success. It set the right tone for the parents who had come to the convention to take part in the revitalization of the Missouri Parents of Blind Children Divison. It's reprinted here as the lead article because it sets the tone for this issue, too. Read carefully and thoughtfully it adds meaning and perspective to all the articles that follow. But don't worry, it's not difficult reading. Julie's story is compelling; it speaks to both the mind and the heart. Here it is:

As you probably know, the motto of the National Federation of the Blind is equality, security, and opportunity. Ask almost any blind person in the world, and he will tell you that he believes he should have these rights. It sounds so sensible and so simple, but in reality this goal is still a dream for many blind adults. Reaching the goal of equality, security, and opportunity requires that a blind person achieve the skills of blindness and the confidence that he can compete in the sighted world. This means waging an ongoing battle against prevailing attitudes and misapprehensions about blindness. This is no easy task.

Historically blindness has been considered a tragedy of immense proportion. In fact, surveys of the general population reveal that only cancer and AIDS are more feared than blindness! Even the most advanced nations of the world treat the blind with pity and consider them the custodial responsibility of the general public. It is no wonder that negative attitudes prevail.

When parents learn that their child is blind or will be blind, the news can be overwhelming. My husband and I were devastated when we learned that our daughter, Lauren, would be visually impaired, and greatly relieved to be told that she would not be "blind." At the time, that distinction was critical. We thought that meant the difference between a possible "normal" life and a life where she would be forever dependent on her parents. As the months passed with our baby, our hope that she would only be mildly visually impaired began to fade. She couldn't see at all outside in bright light.

Indoors she squinted and put her face down to her highchair tray to pick up the Cheerio she'd dropped. Reality hit! We were forced to begin redefining the future that we had imagined for her. As with most parents our initial source of information about our child's condition and her potential came from professionals. Over the course of the first two years of her life we were lined up with various therapists and blindness professionals who gave us information about what was in store for our child. We were given information about her development, about her future education, and about the adaptive techniques, such as Braille and the white cane, that she would be taught. However, the professionals gave us no confidence that these techniques could be as good as "sighted" ways of doing things. We were still feeling sad that she would not have a "normal" life. Now keep in mind that in the late 70's when Lauren was a baby, there was no NFB division for parents of blind children. My husband and I did not know, nor did we seek out, any blind adults. We relied solely on professionals in the field of vision to guide us, and our values and expectations were being shaped by them.

When Lauren began attending school, all kinds of adults began to play a big role in her life. Since blind children are now mainstreamed into the public schools and blindness in children is rare, there is a good chance that the adults meeting a blind child at school will have had no previous experience with blindness. The janitor, the secretary in the office, the school nurse, the parents of the other children, and even the teacher may have never met a blind child before.

Especially when the children are little the tendency is for adults outside the home to coddle them, lead them around, pick up their things, put on their coats--in short, do everything for them. The constant message to the child is that he or she must be careful and not move around much without someone guiding. The child is told that there are many things he or she can't do and that he requires lots of help.

I remember a day when Lauren came home from preschool and refused to pick up her toys. "Don't you know I'm blind?" she said. It hadn't taken this smart little girl long to realize that she was special at preschool, so why not at home?

Our eyes were really opened when she got to elementary school and discovered that even the teachers of the visually impaired had low expectations for our child. We were cautioned by them that though our daughter would be learning Braille, Braille reading is not as fast as print reading. The teacher who introduced Braille to Lauren in kindergarten said that her fine motor skills and sense of touch were not very good and that she might be a slow reader.

"She may need to record her classes when she gets older," we were told. "Her gross motor skills are not good. She may only be able to travel routes where she is in familiar terrain."

Feeling that the professionals were being overly pessimistic, we joined with some other parents and formed a local parent support group. But we were supporting each other by echoing the same things we were all hearing from the professionals around us. The core belief that the alternative techniques of blindness are equal to sighted techniques was missing.

Even though those teachers and professionals, and probably even the janitor, would have said that they believed in equal opportunity for blind children, deep down they harbored the unspoken conviction that being blind is inferior to being sighted. Many teachers and professionals don't truly believe that the adaptive skills they are teaching will allow the student to compete equally with his peers. When they don't believe that the adaptive techniques have equal merit, the tendency is to teach them as a last resort.

In this perspective, the more vision the child has the better chance he has of succeeding. Therefore, anything which can be done to make the low vision child appear less blind will be better for the child. They will keep him reading print, even though he tires quickly and gets headaches. Since a cane would label him as blind, don't encourage him to carry one, even though he may trip on curbs. And if the child is totally blind, well certainly teach him Braille and give him a cane, but don't expect him to read very fast, don't make him do all those math problems, and take him sighted guide whenever possible so that he won't look so blind in front of others.

What is the future for these children? As parents new to the blindness experience it is very hard to step back and critique how our children are being treated. After all, the professionals have masters degrees and doctorates.

At the time our child started school we didn't realize that there was any need to critique. But we began to feel very uncomfortable about some of what was going on. Our child was not expected to be independent. She was guided by classmates around the school or she trailed along the walls. The mobility instructor taught her various defensive techniques to protect her face and hands, but said that she lacked the motor coordination to have a cane.

The people around her were so caring it was hard to criticize them. The professionals had matters under control; everything was normal, she was doing fine. But we began to be concerned that Lauren seemed immature and lacking in self-confidence.

Fortunately, we also began reading Future Reflections, the NFB's new (at the time) Parents of Blind Children Division newsletter. What we learned reinforced us in our resolve. We solicited the NFB's help in getting cane instruction for Lauren over a summer, and in the second grade she returned to school with a cane, much against the advice of the professionals at that time.

Ever since then her father and I have tried to educate school personnel and others to see the implications of their actions and words. But we could only influence the most obvious examples of low expectations and negative attitudes.

Since it is impossible to control the multitude of encounters our children have with prejudicial attitudes about blindness, we must do the next best thing. That is, we must involve our children in an understanding of what is going on around them. We must teach them to recognize that behavior which appears nice and helpful may be patronizing and custodial. We must teach them to be polite, but to take responsibility for their independence.

Since we sighted parents are only just learning to recognize these negative attitudes, we need our friends in the NFB to help us understand. Let me give you an example.

While driving around in Denver I have from time to time come across signs posted in various neighborhoods which read "Blind Child at Play." Before I had a blind child I had always considered that the sign was a prudent safety measure meant to protect a child who was at a disadvantage in seeing approaching cars when playing near the street. What could be wrong with that? I never for a moment considered that such a

sign might reflect a negative attitude toward blindness. But my friends in the NFB pointed out to me that both blind children and sighted children must learn to observe rules when playing near the street and if they observe the rules they can all be quite safe. Blindness in and of itself does not make a child more likely to be injured. Therefore, by implying that the blind child is at higher risk, the sign was actually reinforcing some negative attitudes about a blind person's ability to navigate safely in his environment. If a sign is needed to caution drivers it should read, "Children at Play."

The negative attitudes about blindness are so pervasive that when society comes across a successful, independent blind adult, that person is described as "amazing" or "incredible."

The expectation by the public is that blind people are not capable of being equal, and all too often that expectation is realized. But, what about those "amazing," "incredible" blind people who have responsible jobs, raise families and travel independently in their communities? What is their secret? As parents, that's what we want to know because we want our kid to be one of those success stories.

Speaking for myself, I think I found the answer. It lies within the National Federation of the Blind. No one can do as much for a blind child's belief in himself as an adult blind role model. Period. I don't care how diligent parents and teachers are in teaching the adaptive skills of blindness or how high their expectations, without another blind person showing how it all can work in the big world, there will always be a measure of doubt within the blind child.

As parents it is almost impossible to rid ourselves of all our doubts no matter how much we want to. We need the "real" experts, the competent adult blind members of the NFB who have "been there, done that", to show us and our kids that it is possible to achieve true independence.

For example, when my daughter, Lauren, was sixteen she had a summer job at a day care center helping with the toddlers. She would take the bus to work, a straight shot on the bus line without any transfers. Nothing for mom to worry about. One day she called me from work. She'd lost her wallet on the bus. "It's probably long gone," said I.

"No," she said "I got it back."

"Really?" I said. "How did you find it?"

"Well," said Lauren, "I called the lost and found office for the transit system. They said that my wallet had been turned in! I called for the bus route and took a bus downtown to their office and got my wallet."

This was my totally blind teen-ager who took a bus to downtown Denver and located an office on the fourth floor of an office building--all by herself! Now, mind you I would like to take credit for the independence and self-confidence illustrated by this story, but I cannot. If Lauren hadn't had several years of travelling with her friends from the NFB, I doubt that it would have happened that way.

After I hung up the phone that day I felt such joy, and stifled fears. Had she asked me first, I would have had trouble not expressing my fears about her travelling in unfamiliar territory downtown. I would have been afraid that she'd get lost. Although those fears might have been felt by any mother of any sixteen-year-old girl, mine would have been fueled by those nagging, lingering doubts.

Now, don't get me wrong. We had worked hard through the years to encourage Lauren's travel skills, always urging her to use her cane and practicing street crossings, etc. But it was our friends in the NFB to whom I gave thanks on that day. They were responsible for giving Lauren true confidence in her skills so that she was able to handle the trip to the lost and found without question. I finally knew for sure that she would do just fine in life, without her mom and dad!

Now I have people saying to me that Lauren is amazing. A nineteen-year-old functioning independently in college should not be considered amazing. She is a success because she went to college with excellent Braille skills (including slate and stylus). She had the skills in orientation and mobility needed to travel the campus independently. She had experience in finding and using readers, and she had the confidence to advocate for herself in working and planning with her professors. The fact that others, including many of her peers, see her as amazing shows me that attitudes have not changed very much over the past twenty years. What we should be working toward is a day when competence and self-confidence in a blind person are seen as the norm by the sighted world, and not as something amazing.

As parents we have our work cut out for us. We must become familiar with the adaptive skills our children are learning so that we can be sure they are being taught in school and encourage their use at home year-round. We must maintain high expectations for their performance. Then, while keeping our own demons of doubt at bay, we often have to battle against an educational system that perpetuates negative stereotypes of blindness. It is not easy to question professionals. It is also not easy to examine our children's experiences outside the home and call attention to subtle discrimination. We have to be constantly aware of situations when our children are being denied opportunities for independence and equal treatment. All those "helping" hands can have dire negative consequences on a child's self-esteem, and parents have a responsibility to do what they can to intervene.

This is a huge responsibility, and that is why you need the Parents of Blind Children and the National Federation of the Blind. You need to get involved with fellow parents in your state Parents of Blind Children division. By sharing and networking, those who have insights can share with those who are unsure. Then you need to get involved with the NFB in your community. Go to NFB chapter meetings and meet the adult blind members. Find out what the issues and concerns are for adult blind folks living around you and around the country.

But it could happen that the blind in your community are all elderly blind who grew up sighted and don't know much about blind kids. They may or may not have good skills and be good role models. That's why it's also important to get involved in the NFB at the state level. Be sure to go to the state convention and find some blind adults you admire and develop relationships.

As your child gets older be sure that he or she has the opportunity to develop a social relationship with an adult blind person. Go to the NFB National Convention, and you will expand your knowledge and contacts even further. This sounds like a lot of effort, but what you are doing is becoming a part of a big supportive family, a family which will encourage you and be there for you and your child.

My child is a young adult now and there is no greater comfort to me than to know that she has the love and support of the National Federation of the Blind for as long as she lives. The NFB will be there for her when I cannot. Let me close with a quote from Ralph Waldo Emerson who once said, "The task ahead of us is never as great as the power behind us."

We have the power of the National Federation of the Blind behind us, now let's get to work!