Future Reflections Jan/ Feb/March 1985, Vol. 4 No. 1
by Barbara Cheadle
Last spring I received a very enthusiastic letter from a parent in Texas. She wanted some information about resources for blind/multiple handicapped children and advice on how she could better represent parent's needs on her school advisory committee. In the letter she explained that although she wanted the parent group she was in to affiliate with the NFB Parents of Blind Children Division, others in the group couldn't see the advantage of it.
As I considered what I could say to her, some images of my son played before me. My blind son playing tic-tac-toe with a blind adult friend -- both of them happily pressing their noses to the page, making thick marks with felt-tip pens. . . . Chaz asking my babysitter (a young blind mother) how she could tell when his baby sister's diapers needed changing. . . . His sheepish laugh when I squawked, "What did you say!?" after he had just complained that he couldn't clean his room better, "because I'm blind." . . . The day my son asked me -- out of the clear blue -- if he would be "more blind" some day.
At first, these incidents may not seem to have much to do with the questions this mother raised. After all, she asked about parent's needs and here I am thinking about things my blind son has said or done. But of course most of what we say we need as parents of blind children is actually grounded in what we believe our blind children need. Most of us would agree that our children need positive parents that are knowledgeable and well-informed about blindness and services for the blind. But how many of us have thought seriously about the need of our blind child to be around positive, knowledgeable and well-informed blind adults? Or for our own needs as parents for this contact?
Other children -- boys, girls, blacks, hispanics -- need good role models for the development of realistic goals and a positive self-image. Doesn't it seem reasonable that blind children (and their parents) would benefit from this, too? How many parents have discarded this idea because they could not shake their belief that blind people are inferiors -- helpless and dependent? What do parents who believe this think about their own blind child? Do they decide to accept this view and therefore expect less of this child? Do they decide that their child is "exceptional, not like other blind people"? Do they try to deny blindness -- refusing to even use the word "blind" or perhaps hope and search endlessly for a miracle or cure?
What happens to the confidence, abilities and self-image of these children? Well, those are some of the things I thought about as I wrote back to this mother. Here is an edited version of that letter.
I enjoyed your letter and our subsequent telephone conversation. I am always excited when other parents show such an intense interest in the National Federation of the Blind. I think it is the best organization any parent of a blind child can choose to become a part of. I believe you will find that true, too.
You asked in your letter -- and we touched on it some in our telephone conversation -- about getting involved with the NFB in your area. I did call , the NFB of state president, and told him of your interest, and sent him a copy of your letter. I suggest that you not wait for him to call, but go ahead and contact him.
Now about your questions regarding the blind and multiply handicapped and what you can do to become a better parent-advisor to your school. First of all, the best way for you to get answers to those questions is to join your local and state NFB affiliate, go to NFB sponsored meetings, seminars and conventions and get involved with the NFB public education and fund raising events in your area. Your interactions with, and observations of, competent blind adults will teach you more about blindness -- what you can expect of your blind child and what you should demand of the professionals serving your child -- than you could ever get any other way.
And yes, that includes the blind and multiply handicapped as well. There are blind federationists with just about every other disability you can think of -- cerebral palsy, deafness, mental retardation, etc. Blind and multiply handicapped adults find the Federation and the Federation philosophy as meaningful and as pertinent to them as it is to those who are "just" blind. Parents can learn from these federationists much that will help them better understand their child and his or her potential.
I would also refer them to Doris Willoughby's book, A RESOURCE GUIDE FOR PARENTS AND EDUCATORS OF BLIND CHILDREN. She has a chapter on the blind and multiply handicapped in that book. However, the most important thing she points out is that everything in her book applies, it just may take more time or adaptations because of the other handicap. Other educators in the federation also point out that the parents of blind and multiply handicapped children should get to know as much as they can about each disability that their child has.
Now, I suppose you are wondering how joining the NFB and participating in our activities can help you become more a knowledgeable, more articulate parent when it comes to knowing what to expect (or to demand) from the professionals serving your child. Let me give you some examples.
Not long ago some parents I know had about decided not to introduce the slate and stylus at all to their blind youngster. Educators and most of the professional literature down-play this method of writing Braille. They say it is difficult for a child to learn (it isn't) and no longer really necessary because of the Braillewriter (not true). These parents changed their minds after spending a day at an NFB function and observing blind people using a slate and stylus. They saw, first hand, the convenience and portability of the slate and stylus. By talking to the most skillful users they learned how important early introduction of the slate and stylus was, and that it need not be difficult for a child to learn if properly introduced and taught. Without this experience their child could have been deprived of gaining speed and competency in a very important skill.
This kind of experience is beginning to be repeated more and more as parents are going to NFB seminars and conventions. At a Colorado NFB parents seminar, one parent told us that they now had the information and support they needed to insist on cane travel lessons they wanted for their eight year old daughter. For two years they had let the professionals talk them out of it. Now, after hearing the experiences of dozens of blind adults and hearing about the results of an NFB philosophy influenced educational program that begins all children at age five with cane travel, they know that their instincts had been right.
Those are just two experiences from two sets of parents who have learned how the National Federation of the Blind can help them evaluate their child's educational program. There are many others.
The most important benefit I am now receiving from the NFB is not what I learn, but what my blind son learns. Just two weeks ago he asked a blind friend who had us over for dinner if her teen-age daughter (who is sighted) cooked the meal. I and my husband knew immediately what he was really asking. What he was really saying was, "Can blind people cook a meal just like I know my sighted mother and other sighted people can?" Would he have asked that if he were never around a blind person? Maybe, maybe not. Would he have believed a sighted person the way he could believe a blind person? I doubt it. Would he have even thought about it if he were not around blind people? He most surely would have. Ask any blind adult about the unasked questions and doubts they had as a blind child.
My son is only six years old and he has been asking question about blindness since he was four. That shows you how quickly they pick up on the negative social attitudes and beliefs about blindness that are all around them. The benefit my son has experienced already from his exposure to our blind friends and acquaintances is enormous. They are living examples of a positive attitude about blindness. They are not ashamed, angry, or embarrassed about their blindness -- whether it be total or partial. Their example teaches my son so much more about how to feel good about himself as a blind person than anything I, or any sighted person, could ever tell him.
I have also found that members of the National Federation of the Blind make the best role models. Most federationists try hard to apply the NFB philosophy about blindness to their own lives. Furthermore, they have a deeper understanding of blindness because of their association with the largest, oldest consumer organization of the blind (the NFB) in this country. Federationists know, for example, if their personal experiences are common or unique among blind persons; they know how to evaluate services and programs for the blind critically and honestly; they are better prepared to know when special services are appropriate and when they are not; and federationists lead the way in demanding the rights and accepting the responsibilities of first class citizenship for themselves and for all blind persons.
This doesn't mean that all members of the National Federation of the Blind are paragons of virtue and competency. They are not. You will find the same range of intelligence and personality characteristics among the blind as you will among any sighted group. Some are friendly and outgoing, some are shy and introverted; some are tactful and some are not; some are bright, most are average and some are below average; and some are more competent than others. But that's OK. It is one of the best demonstrations of the real "normality" of the blind that there is.
You say in your letter that although you are sold on the value of the NFB, other parents and members of your parent group are not. Those things I have discussed so far should help convince them. But those are not the only good reasons to join.
I believe that parents who really wish to create better opportunities for their blind child's future (opportunities for good jobs and promotions; opportunities to travel and live where they wish without harassment and restrictions; opportunities to participate fully in community, social and church affairs; and all the other things that make life happy and rewarding) that they have no choice but to join the National Federation of the Blind. I also believe that parents have a moral obligation to help make the way easier for blind persons of the next generation (that includes blind children and their parents).
The National Federation of the Blind knows that the real obstacle to achieving better opportunities for our children is not the physical fact of blindness but social attitudes, myths and misconceptions about blindness. The National Federation of the Blind believes that, given proper training and opportunity, blind persons can compete on a basis of equality with their sighted peers.
A young blind man (a college student) was telling me recently why he wanted to join and strengthen his local chapter of the National Federation of the blind. He said something to this effect, "I will be graduating from school in a few years and when I get out I am going to want a job. If I join the NFB now, and do everything that I can to help our chapter educate the public about blindness, then I am going to have a much better chance of getting a good job in a couple of years. So, I guess my reason for joining the NFB is a selfish one. I want a good job and a better life for myself." We parents could learn a good lesson from this young man. Just think what the opportunities could have been for him if his parents, ten or twenty years ago, had been able to understand and act on what he now understands and is acting on.
It is no coincidence that the communities with a good public understanding and acceptance of blindness invariably have a large and active chapter of the National Federation of the Blind.
Again, I am excited and pleased about your decision to join the National Federation of the Blind. There is no doubt in my mind that the single best action parents can take to insure for their child a future of opportunity is to work side by side with the organized blind to achieve our mutual goals of security, equality and opportunity for all blind persons.