Future Reflections Winter 1986, Vol. 5 No. 1

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by Barbara Cheadle

January, the first month of the year, is named after the Roman god, Janus. Janus had two faces, one looking to the past, one to the future. It takes little imagination to understand why the first month of the year would be named after this particular mythical figure. The end of the old year and the beginning of the new is an appropriate time to reflect upon the past and to plan and ponder the future. And that's something everyone should do. How else can we learn from past mistakes or avoid reinventing the wheel?

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?

In the 193O's there were no parents of blind children organizations, no national organization of blind adults, and only a smattering of local or state associations of blind persons.

The climate of the day made the very idea of parents of blind children organizing, incomprehensible. Blindness was a tragedy. It was a shameful and pitiful condition; strongly suggestive of some hidden sin on the part of the individual or his/her parents. The future of a blind child was never in question. Everyone knew what blind people did-- nothing; nothing very important or useful anyway. The organizing of parents could not even be conceived of, much less executed in this atmosphere of shame and conviction of the utter tragedy of blindness.

What about organizations of the blind? Associations of the blind have existed in some form or another for hundreds, posssibly thousands of years. There were some highly successful "free brotherhoods of the blind" in medieval Europe. In this country, voluntary associations of the blind would not appear until the last quarter of the nineteenth century. By the 1930's,

there were a number of local and state associations of the blind. Many were alumni associations of residential schools for the blind. Possibly the most progressive of them all was the Alumni Association of the California School for the Blind. Formed by Dr. Newel Perry and a handful of other blind colleagues, the purpose of the. association was "to escape defeatism and to achieve normal membership in society."

But most blind groups of the 30's were not ready to push for the goals of equality and normality. Many were just social, tea and cake outfits made up of people who gained some solice and comfort from each other. These groups as well as the more activist groups, were all lumped together and viewed by the public and the professionals of the day with condescending tolerance.

Harry Best, in his 1934 book, Blindness and the Blind in the United States expressed typical attitudes toward the organized blind. He said, "In organizations composed largely or entirely of blind persons, there is manifested the deep-seated human desire for mutual comradeship due to a common affliction. Objection is sometimes raised against the 'clannishness' which may result from such intercourse; but after all the harm capable of being done is small, while the satisfaction rendered is considerable. The meetings, futhermore, are hardly likely to be of sufficiently frequent occurrence to cause very great concern." Kind, patronizing, and arrogant—his words summed up the condition and problems faced by the blind of that era.

What a difference from the attitudes and realities of today! Most of the progress we have made toward the integration of the blind into society can be traced, directly or indirectly, to the organized blind movement—the National Federation of the Blind. The public feels more goodwill and respect toward the blind than ever before. Even the regressive agencies in work with the blind have been forced to respect—if grudgingly—the National Federation of the Blind. But that wasn't so in the 30's. It hardly goes without saying that there simply wasn't any organizational relationship between parents and blind adults and very little between individuals.

A look at the history of the blind and parents of the blind would not be complete without some comments about residential schools for the blind. The schools were practically the only source of information and help about blindness for parents. For blind children, the residential schools were the only hope for an education. They were also about the only place where a blind child could experience being treated like a normal child. In the best schools, they were taught personal independence and were expected to compete and perform just like other children. For blind adults, as we have already observed, the schools were an important source of self-organizations of the blind.

All these things have been crucial to the ultimate integration of the blind into society. Those who would putdown residential schools do not understand history or how equality and opportunity are achieved. A blind child will not have equality and opportunity just by sitting next to a sighted child in school. She must feel equal, be treated like an equal, and have a chance to participate fully in all activites. The child in a residential school is not necessarily isolated from the "real" world. Skills and confidence learned in a good residential school can be an excellent preparation for their adult life. Of course, a residential school can be overprotective, and public schools can teach skills and treat blind children as equals. The point is that neither is inheriently more restrictive or less isolating than the other.

Between 1930 and 1940, our nation would experience the tremendous pain of the great depression. One of the results would be the nationalization of welfare and the establishment of social security. This lead inevitably to the nationalization of the blind movement. In 1940 the National Federation of the Blind was organized and became the first national organization of the blind in the country. The founding father, and first president of the new movement, Dr. Jacobus tenBroek, stressed that national needs and national issues required national solutions.

The goal of the National Federation of the Blind was comprehensive and far reaching. It was no less than the complete integration of the blind with the sighted on a basis of equality. Security, equality, and opportunity would become the watchwords and motto of this fledgeling organization.

The organization swung immediately into action with programs designed to begin achieving these goals. Reforms in social security and state aid to the blind were sought. Job discrimination in public and private employment was tackled. A campaign to pass White Cane Laws (civil rights legislation for the blind) in the various states was mounted.

Not surprisingly, the reaction to the National Federation of the Blind among insititutions in the field of work with the blind was mixed. Some of them welcomed the organized blind as partners and sought them out for critical input into programs and services to the blind. Just as many, however, reacted with hostility and viciously attacked the youthful movement. Prominent among those hostile agencies was the American Foundation for the Blind.

Some resistence to the NFB was, of course, inevitable. The goals and purposes of the National Federation of the Blind were revolutionary. The NFB was out to change the status quo of the blind from ward and dependent to self determining, first-class citizens. This was too much for agencies founded in the charitable traditions of care-takers and guardians of the blind. It was inconceivable to them that ordinary blind people could take charge of their own lives and make their own determinations about what they needed or what was "good" for them. They assumed the blind were basically inferior. The National Federation of the Blind aggressively rejected that assumption. There were other reasons for the hostility against the National Federation of the blind. Some agencies, such as the workshops for the blind, had a vested financial interest in keeping the blind dependent. They feared that the NFB would force wage increases and demand better working conditions. Of course, the National Federation of the Blind did lead the way, as it still does today, for necessary reforms in sheltered employment of the blind.

The agencies moved against the NFB by attacking blind people who dared to join or support the National Federation of the Blind. Blind vendors and sheltered shop employees were fired or threatened with dismissal; blind state employees were harrassed and pressured; and confidential records of active blind members of the NFB were disclosed and exploited in an attempt to discredit the individuals and the organization. The hostile agencies even went so far to as to form a special committee to counteract the National Federation of the Blind.

The right of blind people to organize, to speak collectively, and to be heard, was on the line. In 1957, legislation was introduced by Senator John F. Kennedy of Massachusetts, "to protect the right of the blind to self-expression through organizations of the blind." Though the Kennedy bill, as it was called, did not pass, it gained wide support and surfaced again in 1959. This time there were extensive public hearings. Though the bill once again did not pass, the objectives were achieved without the legislation. After the congressional exposure and voluminous testimony of blind men and women all over the country, the agencies beat a retreat.

Though the National Federation of the Blind survived the right-to-organize crisis, the virulent attacks on the organization had far-reaching consequences. For one thing the agencies and specifically the American Foundation for the Blind, succeeded in poisening a whole generation of parents of blind children against the National Federation of the Blind. The hatred and fear which the American Foundation for the Blind had demonstrated against the National Federation of the Blind during the right-to-organize fight, did not disappear just because the NFB prevailed. The American Foundation for the Blind continued to undermine the National Federation of the Blind whenever possible. How they were able to do this on a large scale with educators and parents of blind children will be discussed in more detail in poart 11 of a coming issue.

Though the National Federation of the Blind dates back to 1940, and associations of the blind in general much further than that, the organizing of parents of blind children, even at local levels, would not happen until the late 40's. The desire to give some hope and comfort to each other would be a part of the impetus to organize, but only a minor part. Mostly they were a direct result of the advent of a new, mysterious disease which would blind thousands of children before the medical community could bring the epidemic to a halt.

Who could have guessed that medical technology, in this case, the development of equipment and techniques which could save the lives of premature infants, would be the cause of the blinding condition Retrolental Fibroplasia (RLF or Retinopathy of Prematurity)? By the time medical authorities discovered that RLF could be prevented by controlling the amount of oxygen given to premature infants, some 10,000 to 12,000 children would be blinded. (We are now in the middle of a new wave of infants being blinded by Retinopaty of Prematurity. These infants are usually more premature than the infants of the 40's and 50's. Sometimes the choice seems to be death or blindness. This new wave has forced medical researchers to look again at the causes of Retinopathy of Prematurity.)

Up to this time, most blind children were educated in residential schools for the blind. Some attempts had been made at establishing day classes for the blind within the regular schools in the early 1900!s. Such programs were iniated first in Chicago then in a few other large cities. Even so, the ratio of residential school pupils to public school pupils remained pretty much the same between 1915 and 1950, about 90% in the residential schools and 10% in public schools. But the RLF wave changed all that.

Unprepared for this epidemic, the residential schools simply did not have space for these children. In California alone there would be some 1,200 blind children needing an education and only space for a 100 plus students at the state school for the blind. Even if facilities could have been expanded quickly enough to timely educate these children (not possible) how could anyone determine how many children to prepare for, and what would they do with all the new buildings if a cure were found and the populaiton of blind children dropped again? The choice was simple. Either these blind children would be integrated into the regular schools or they would go without an education.

And that's when parents of blind children began to organize. Parents were not going to stand by and let their children be educationally shortchanged. Like any other group of people with a common problem and cause, they soon learned the value of banding together.

These parents were aided in their efforts to get their children into the regular schools by a social climate that was increasingly favorable to de-institutionalization of all groups, from handicapped persons to orphans. There were other factors which also helped. The babies blinded from RLF had been born in hospitals that could afford the latest equipment and technology. Naturally, this meant that most of the RLF blinded children had middle-class parents who were largely clustered together in urban areas. These parents had the confidence and the numbers to press successfully for the integration of their children into the regular schools.

The parent organizations that Marie Porter and Ellen and Ken Reining were active in are fairly typical of this era.

Ken and Ellen lived in Toledo, Ohio when their daughter, Mary Ellen, was born prematurely in 1953. They soon discovered she had RLF and would be permanently blind. The Reihings were first told that they would have to move to Michigan so their daughter could go to the school for the blind. But they soon decided, along with other parents, to persuade the local public and private schools to set up resource rooms and enroll the blind children.

A workshop for parents was organized by some social workers in 1953 and Father Carroll came to speak to the parents and to help them organize.

After the group had succeeded in getting their children enrolled in the regular schools, they spent their time and efforts seeing that these programs were supplemented and reinfored. They raised funds to purchase Braille writers, organized dancing classes, and sponsored Christmas parties.

The parents relationship with blind adults was minimal. The Toledo Society for the Blind donated rooms for parties, the dance lessons and the like. Occasionally the parent group had a blind adult come and speak. Mostly, parents didn't have much contact with blind adults and the children had even less.

Parents began to drop out of the organization after professionals began to dominate it. The group was disbanded about 1966--just long enough for the greatest number of RLF children to get through the educational system.

Marie Porter of Chicago is the blind mother of a blind son. Her son is now grown and Marie is a grandmother. Marie became active in a parent group that organized in Chicago around 1948. She remembers that it was a medical social worker at the Chicago University who was instrumental in encouraging and helping get this parent group started.

The goal of the parent group, she reports, was to integrate the blind kids into the regular schools, nursery schools, camps and such. They had a legislative program, a newletter (which Marie edited), and raised funds. At the time the parents group was organized, there was no affiliate of the NFB in Illinois. Before the parent group disbanded, a chapter was established in Illinois and Marie joined and became active in it.

The group would occasionally have blind adults come to speak at meetings, and blind adults were sometimes asked to tudor blind children who were having problems in school. Marie was the only blind member of the parent group. Marie also remembers tensions existing between blind adults and parents of blind children over the public school versus the residential school for the blind controversy (more about this in part II).

Because she is blind and has learned to view the larger picture through her association with the NFB, Marie has some particularly helpful insights on why parents groups such as the one she was active in, died out in the late 60's and early 70's.

She reports that when her parent group started it was an activist organization that was not popular with the agencies. As the group made progress and began to accomplish its' goals of integrating the blind children into the public and private schools and other institutions, she saw the agencies move to absorb the consumer group. Sometimes there was pressure and parents (especially parents of multiple handicapped children) feared they would have their services cut off if they didn't fall into line. Often, the absorbtion came about more subtly. Parents were asked why they were spending their time raising funds for the parent organization when the schools needed them to raise money for their child's programs. Made to feel they had to make a choice between their parent organization and the agencies providing services to their child, the parents chose to go along with the agencies.

There was another factor. The parent groups had not been able to see the long 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 the necessary skills, everything would be O.K. They did not perceive the blind as a minority, therefore 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 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.

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