by Barbara Cheadle
"We have frequently reported about parent group activities in Future Reflections, but never really taken a look at the origins of parent of blind children organizations. When did the first ones organize and why? Why is it that most parents from the late seventies to the present have not found any active local parent groups, but have had to organize new ones or revive old ones? What relationship have parents and parent groups had with blind adults and the organized blind? What implications do the answers to these questions have for the future of parent organizations?"
That's how I began Part I of "Looking Back...Looking Forward" in the Winter 1986 issue of Future Reflections, I proceeded from that point to take our readers through a little of the history of the birth and growth of the organized blind (the National Federation of the Blind is the oldest, largest, and most active national organization of the blind in this country), the origins of parents of blind children groups, and finally the demise of parent groups that had once been strong and active in the 50's and 60's. At the very end of the article, I listed three topics which I would explore in the final article of this two-part series. To help jog the memories of those who read Part I and to provide some background for those who did not, here are the last few paragraphs of Part I.
"There was another factor (to the demise of parent groups). The parent groups had not been able to see the long-view or to identify the real problem of blindness. They had taken on short-term goals based on a limited understanding of blindness. Parents believed that if their child could just get a good education and necessary skills, everything would be O.K. They did not perceive the blind as a minority, therefore they could not anticipate the discrimination and prejudice their grown blind children would face. "Without the broader understanding of blindness and the long view, it is understandable why so many parent groups would succumb to pressures from the professionals or simply die out as they achieved their short-range goals.
"Next issue: 'Looking Back...Looking Forward: Part II' *...The residential school versus the public school controversy. *...The American Foundation for the Blind takes over the teacher-training programs for educators of blind children. *...Parents of blind children and the National Federation of the Blind; where are we, where are we going."
That's how Part I ended. As I thought about what needed to be said !¦ ftart II, I remembered an article written by Dr. Kenneth Jernigan not so long article, which appeared in the Monitor, was called, "Of the School for the Blind and the Legacy of NAC".
The first half of that article is an excellent summary of the history of the unfortunate 'residential schools for the blind versus mainstreaming' conflict in which the American Foundation for the Blind played such a dominant role. Now, since it doesn't seem to me to be either a wise or prudent thing to re-write what has already been well and throughly written, I am reprinting the first half of that article, then wrapping up Part II with a look at what is happening now with parents and the National Federation of the Blind.
(Note: I do urge all readers to write the NFB and request the complete version of "Of The Oregon School for the Blind And the Legacy of NAC". The copy is free and the topic--the damage the National Accreditation Council for Agencies Serving the Blind and Visually Handicaped--NAC--does to the blind is very important to people who care about quality services for blind people).
There was a time (pre-World War II) when the residential schools for the blind rode supreme. In almost every state in the country the "School" was all there was--or all that really counted. Academic programs were strong, and no one would have dreamed of questioning that a blind child needed education, or that the best place to get that education was at the "School."
There were changes in the 1940's, but these were more in the nature of signs and portents than actual occurrences. With the Rehabilitation Act Amendments of 1943 (Barden-LaFollette) the blind were to be included, but at first the stream was only a trickle. It would be at least a decade before the trickle would become a river, and still later before it would become a flood--and later yet before it would become a destructive torrent.
It was also in the 1940's that the wave of premature babies who were blinded by retrolental fibroplasia began to emerge and move through society. By the time the wave subsided in the 1950's 10,000 additional blind children were spread through the population, and the education of blind children would never be the same again--which, some said, was the greatest thing since apple pie and others said was the quintessence of going to hell in a handbasket. Regardless of who was right, the residential schools for the blind simply could not cope with the increased numbers of blind children, and the parents were not in the mood to sit and ring their hands. In California, for instance, the school (at a maximum) could probably cope with 200 students, and there were approximately six times that many waiting in the wings to be educated.
No matter how wealthy the state might be, it was simply not in the cards that it would spend the money to increase the facilities of the residential school six hundred percent. And even if such a project were undertaken it would be at least a few years before it could be finished. In the meantime blind children would be sitting at home, and their parents would be beating on the politicians.
The only answer seemed to be to send the blind children to the regular public schools in their home communities, but who would teach them? And how would they function? At this stage the American Foundation for the Blind stepped into the picture and said that it would happily provide the answer. It said that the public school was the proper setting for the blind child in any case. Yes, the residential school was all right if the blind child came from a bad or a broken home or had severe and multiple handicaps, but otherwise (as Foundation staffers were fond of saying): "You really wouldn't want your child to have to go away from home, would you-- and besides, do you think your home is a bad place and not up to standard?" The Foundation indicated that it would train teachers, help organize parents, help set up university programs to serve as focal points for it all, and generally take charge.
As with many things, the Foundation's actions and motives were mixed. There was unquestionably a need for more teachers trained to educate blind children, but it is hard to see how the political activity of the American Foundation for the Blind in organizing and propagandizing parents was anything other than destructive and negative. In the name of independence the Foundation indoctrinated the parents to believe that their blind children were the very opposite--very limited, very dependent upon a highly specialized support system (emanating, of course, from the American Foundation for the Blind), and very mysterious and difficult to understand-- certainly not able to be raised by ordinary parents in the ordinary way with nothing more than the adaptations which should be made by common sense and a few helpful suggestions from time to time. Moreover, the Foundation made a great mystique of having long classroom discussions in its university teacher training programs and special education classes as to which was better: "the residential school setting," or the 'Integrated or public school setting?" Of course, the discussions begged the question, for integration and geographic proximity are not necessarily the same thing. Ask some of the token blacks who were placed in white school classes. They can tell you. The focus should have been on quality education in both settings. It was not an either or proposition, for there are advantages and disadvantages both ways. Either kind of setting can be good, and either kind can be bad. A great deal of damage was done and a great many opportunities missed by the political maneuverings and the over psychologizing of the American Foundation for the Blind and its disciples in the early decades of the Retrolental Fibroplasia problem. For that matter, the same is true today--and not just in the field of education.
Be that as it may by the time of the 197 O's and 80's most of the residential schools for the blind had been very nearly ruined, being more in the nature of custodial institutions for the multiply handicapped than schools for the education of children. To compound the problem there were a great many normal blind children left in these schools, as there still are today. Despite the glib "professional" talk about quality education, such normal blind children were and are being graduated with very little academic skill or background and scant hope of competing on terms of equality with others in the work-a-day world. Even with all of the emphasis on the multiply handicapped and the scrambling to get more students, the residential schools have had trouble getting anybody to attend. With all of the bad press they got from the American Foundation for the Blind decade after decade it is little wonder.
As the wave of Retrolental Fibroplasia has subsided, the public school classes have faired little better. The tendency has been to try to keep jobs for the teachers by further "integrating." Mix the blind, the retarded, the deaf, and every other disability group. Never mind that the academic result may be zero and the expectations very nearly as low. After all, the important thing is that everybody be "mainstreamed." Integration, being with one's peer group, and proper "parenting" are the name of the game. Let us not be misunderstood or misquoted: The objection is not to mainstreaming. Mainstreaming can be a positive and a constructive experience, but it is not a magic formula; nor is a residential school necessarily and irrevocably the passport to ruin and maladjustment. The very argument pitting one against the other is one of the principal causes of the problems which both have experienced and the failure to recognize and cope with real issues.
The parent groups of the 50's and 60's did not--and given the circumstances, perhaps could not--really understand how the real problems of blindness were attitudes, not the lose of vision. We have just read what happened when the American Foundation for the Blind stepped into that scene. The Federation of that decade, a young organization beleaguered by the agencies and torn by internal growing pains, could not take on the wholesale educating and organizing of parents. It just wasn't in the cards.
Even so, the NFB was far from inactive when it came to the needs of blind children and their parents. Dr. Jernigan and the NFB of California helped organize a parents group in that state in 1954. The affiliate also co-sponsored a state-wide conference on the education of blind children and subsequently published recommendations. Other state affiliates conducted similar activities on the behalf of blind children and their parents. However, the American Foundation for the Blind reigned supreme in the land and most parents of that era would not hear of the NFB until their children were grown.
But those days are gone. The balance of power has shifted from the agencies to the blind themselves. Today the National Federation of the Blind is recognized internationally for it's leadership in affairs of the blind. We are strong and respected for our ability to get things done. We have credibility. Thousands of blind adults have proven to themselves and to the world that our philosophy truely works in the "real" world. An ever increasing number of parents are discovering how our perspective on blindness works for blind kids too. The letters we receive from parents in response to our literature and seminars are testimony enough to that. (One such letter is reprinted in this issue's "Hear Ye" section and there are many more like it).
The simple answer to the question posed earlier in this article series -- "Parents of blind children and the National Federation of the Blind, where are we, where are we going?" is this: We are partners. We have joined forces in the struggle to achieve equality for all blind persons, young and old. As sighted parents we have ackowledged that we must learn about blindness from someone and we have chosen to learn from the organized blind. The blind have told us that blindness need not be a tragedy and that with the proper training and opportunity it can be reduced to the level of a nuisance. A growing number of us have become determined to make this a reality for our children, just as it has become a reality for thousands of blind federationists who have become models for our children and inspirations to us.
The vehicle for this partnership is our national organization, Parents of Blind Children Division of the National Federation of the Blind (POBC). Organized in 1983, the POBC was a natural outgrowth of the activities of the NFB Committee on Parental Concerns. It was the Parental Concerns Committee which orginally sponsored and published Future Reflections (then called the NFB Newsletter for Parents of Blind Children) back in 1981. (Now of course Future Reflections is published by our national office).
The fourth annual meeting of POBC was held in July this year in conjunction with our national NFB convention. The turnout was great (150 to 200 people) and the reports of our activities over the past year truely impressive. We have a growing number of state parent division affiliates. Even in those states without a formal NFB parent division we have NFB Parent Action Committees. Both are doing exciting things.
For example, The NFB Parents Division of Maryland is pushing for legislation which would give every blind child the opportunity to learn Braille (even totally blind children in the state have a tough time getting appropriate Braille instruction and if a child has some vision they will not consider it at all). The NFB of Maine has been pushing their state to hire qualified teachers of the blind (currently just about anyone, regardless of skills, experience, or training can be hired to teach blind kids): Federationists in Colorado, Maryland, Pennsylvania, Minnesota, and many other states are going to IEP meetings at the request of parents and helping them get good services for their blind child. Parent newletters, picnics, white cane banks, and field trips for the kids are other examples of what our affiliated NFB Parent Divisions are up to.
Our National organization has sponsored or promoted over 50 seminars for parents in the past three years. As a result, we have touched the lives of literally thousands of blind children through the information and support we have given their parents or teachers. We have also initiated some highly successful and popular projects such as the NFB Braille Reading Contest For Blind Childeren and the NFB Slate-Mate program for Braille pen-pals.
In two years around 400 blind children have participated in, and benefited from, these programs. Educators and parents alike are enthusiastic about the results. Blind children, without a doubt, have become better readers and learners because of the NFB Braille Reading Contest. The contest has even attracted international attention. Teachers from countries overseas have inquiried about the contest for their blind students.
One of our earliest projects was the distribution of the video "Kids with Canes". The circulation of this video, in conjunction with other NFB literature about cane travel and mobility, has done much to increase the awareness of the need for early instruction in cane travel. This year we will be adding another video. This new video features the blind parents of two young sighted chilren. It's an excellent demonstration for sighted parents and blind parents alike of the normal lives blind people can lead.
1986 also marks the establishment of the NFB Network on Blindness and Adoption. This network is co-sponsored by POBC and by the NFB parental concerns committee. (An article about the network was published in the Winter 1986 issue). Blind orphans and blind prospective adoptive parents both face discrimination and predjudice based on misconceptions of blindness. This network will combat that discrimination and provide support and information as well.
The progress we are making is exciting, but it is only a small beginning. We are a young organization and there is so much more to do. Most parents do not belong to any organization of parents at all. Other parent groups are dominated by agencies or the professionals and therefore cannot act freely. Fear of retaliation and possible loss of services is a genuine concern. But more and more, parents (progressive professionals, too) are breaking free of old concepts of blindness and finding common cause with the organized blind.
The future? It will be what we make it. Our blind children can have a future of opportunity and freedom freedom to try and to succeed or fail on his/her merits and abilities alone; or they may face a life of restrictions, dominated by regressive agencies and without the skills or the confidence to break free.
The choices we make, the actions we take, or fail to take, are the bricks which pave the way toward one of those futures. I know which future I want for my son. That's why I have thrown my lot in with the the National Federation of the Blind.