Future Reflections March/ April 1983, Vol. 2 No. 2

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ADVENTURES IN WONDERLAND: A REPORT ON THE NAPVI PARENTS' AREA MEETING

By Barbara Cheadle

Note: The October/November issue of Future Reflections had an article entitled, "An Open Letter to Our Readers." In that article, I pointed out how attempts are being made by the American Foundation for the Blind (AFB) to use parents through the National Association of Parents of the Visually Impaired (NAPVI), as a tool for their own political interests.

The article demonstrated how the AFB promotes a negative, damaging philosophy about blindness. This negative philosophy of blindness as inferiority and second-class status is losing ground before the progressive, positive attitude of the NFB... which is the belief that blind people are normal, capable people who can compete equally with others if given the opportunity and training. As a result, the AFB has been steadily losing support and credibility as an authority on blindness. Its attempts to dominate the field of blindness have failed.

But instead of re-thinking its philosophy, and turning to the organized blind as equal partners for guidance and information, the AFB has chosen to close its mind and strike out at the very people it claims to serve ... the blind. One of the most blatent examples is the AFB's creation of, and continued support and promotion of, the National Accreditation Council for Agencies serving the Blind and Visually Handicappped (NAC). NAC was organized some 15 years ago with the stated purpose of improving services to the blind by setting standards and accrediting the agencies which met those standards. The concept was a good one. The results were a mockery. NAC accredited agencies include some of the worst in the country; agencies that have engaged in illegal conduct and unethical behavior; workshops that have paid productive workers as little as 584 an hour, and the list goes on. Needless to say, agencies around the country are not beating a path to NAC's door.

Now the AFB has organized NAPVI, gives it grants to cover the costs of the many NAPVI parents area meetings which are held all over the country, pays expenses for the NAPVI board members to attend those meetings, and in general gives guidance and direction to the NAPVI board. In view of the AFB's past behavior and its slipping political influence, it is clear that the AFB hopes to create a new political ally in the guise of a so-called "independent"parent organization... NAPVI. The following report makes clear how the AFB is doing just that. On November 5th and 6th, 1982 at the Howard Johnson's Hotel in St. Louis, Missouri, the National Association of Parents of the Visually Impaired (NAPVI) had its annual meeting and conducted a workshop for parents in the area.

The program for the parents' workshop began Friday evening with speeches given by Charles T. Stevens, Director of the Missouri Bureau for the Blind, and Dr. Mae Davidow, lecturer and retired teacher, Overbrook School for the Blind. Mr. Stevens talked some about the various attitudes toward and about blindness and the means by which we can change the negative attitudes to positive ones. Dr. Davidow concentrated on her personal experiences as a blind child and blind teacher and talked about attending a school for the blind.

The program on Saturday mostly emphasized our children's legal rights to a public education. This included some discussion of the recent proposed changes in the regulations for PL-94-142. Kay Ferrell, the new Preschool Consultant from the American Foundation for the Blind, was also on the program with a topic called, "Bend and Stretch: Jazzercise for the Visually Impaired." The last two items were a parent panel discussion and an item called, "Where Shall We Go from Here?" The last item was an attempt to get local parents to organize a local affiliate of NAPVI. Though there was much talk, nothing got off the ground in terms of a commitment to organize or affiliate with NAPVI.

As it turned out, my interaction and conversations with NAPVI board members turned out to be the most illuminating aspect of the whole weekend. Before I left, I had begun to feel very much like Alice in Wonderland. I have not read that book in some time, but my youngest son has an adapted version of part of the story on tape. In that version, Alice comments (after one strange thing after another keeps happening) how everything seems to be getting "curiouser and couriouser." That is how the following events seemed to me.

But first let me back up some. About four weeks before the meeting, I had written a letter to NAP VI president, Lee Robinson. In that letter, I returned a NAPVI membership card, and explained that the money I had recently sent in was not for membership, but for a subscription to the NAPVI newsletter, Awareness. I also asked, in that letter, about the time and place of the NAPVI annual meeting. I had learned it was to take place the same weekend as the St. Louis Area Parents' Meeting. I presumed important issues affecting parents of blind children would be discussed at such a business meeting, and I wanted to sit in on what I could of it. Mr. Robinson never repled to my letter, so I arrived at the hotel early Friday afternoon, well before the parents' meeting was scheduled to begin. The clerk at the desk directed me to the room. I opened the door and asked if I could sit in on the meeting. I was informed by Mr. Robinson that this was a "closed" meeting.

Later I learned that in these meetings, which to the best of my knowledge only board members and spouses were allowed to attend, resolutions were discussed and passed, officers elected, and all other business of the organization conducted! When I questioned these practices (it did not seem very democratic to me), I was told that next year, about four or five years after NAPVI was organized, officers would be elected in a meeting open to the membership! "Curious" indeed!

When I returned Friday evening for the program, NAPVI secretary, Linda Katske, returned the money I had sent in for a subscription. She explained, after I questioned her, that it was against their "policy" to send their newsletters to nonmembers. When I later took this up with President Robinson, I was told that there were only two ways I could get their newsletter: I could either become a member, or I could write and tell them I was a library (he told me libraries were prohibited legally from joining). Needless to say, I was shocked and disturbed. In this conversation, I pointed out the hypocracy of that stance. They, he and other NAPVI board members, had spent a great deal of program time talking about the need parents have for information, yet they were telling me I could not have a subscription to their newsletter! At first this "policy" was defended with the argument that they needed the money. I pointed out that I was quite willing to pay for a subscription. I further pointed out that the NFB publications, the Braille Monitor and Future Reflections are available to anyone, members and non-members alike.

I explained that I had my reasons for not joining NAPVI (and the more we talked the more reasons I had) and I was not about to lie and tell anyone that I was a library! The conversation ended when Mr. Robinson said something to the effect that that was their policy and he didn't see much need to discuss it any further.

But things were to get more curious as the weekend passed. NAPVI board members were reluctant to discuss my concerns about NAPVI and its relationship to the AFB, and then only if Lee Robinson were present. Lee Robinson not once initiated a conversation with me ... not even to deal with the questions and requests I raised in my letter, yet he had obviously shared that letter with all the other NAPVI board members. In a most bizarre encounter, the NAPVI treasurer, Henry Hedgecock, accused two of, as he put it, "your group" of using "bribery" to prevent the circulation of the NAPVI newsletter, Awareness. Of course, the truth of what occurred made the accusation at best ridiculous and laughable, and at worst suspiciously paranoid. Apparently two persons (yes, they were members of the NFB, one was an agency representative and the other a blind parent of a blind child) were standing at the literature table. While looking for a particular piece of literature, some NAPVI newsletters were picked up by mistake, and so put back down. Before leaving the table, some money was loaned from one to the other. To add insult to injury, the parent involved was rudely told to "drop it" when she explained and asked for an apology from Mr. Hedgecock. As Alice in Wonderland would say ... "Curiouser and curiouser!"

Then I discovered that the NAPVI board had drafted a resolution dealing with accreditation and had specifically named the National Accreditation Council serving the Blind and Visually Impaired (NAC) as an appropriate accrediting body, along with other agencies such as The Commission on Accreditation of Rehabilitation Facilities (CARF). I was told the thrust of the resolutions was to support and encourage accreditation of educational facilities and programs serving visually impaired children.

This resolution was to be voted on at the board meeting on Sunday, following the Saturday parents' area meeting. When I asked if I could read that resolution, I was told I could read it when it was published in their next newsletter (the one I cannot get because I do not wish to be a member, or lie about being a library). I then asked if they were aware of the serious problems with NAC, and the long list of evidence demonstrating its damaging influence in work with the blind. Mr. Robinson said he was aware of what the NFB has said about NAC, but board member Linda Katske was not, so I gave her several copies of the article, "More Meetings with NAC and the AFB: The Picture Seems Complete," from the August issue of the Braille Monitor. Later, she informed me copies had been given to each of the NAPVI board members. I do not know if that had any impact on the vote on the NAC resolution or not. I was told that the resolution did not really "support NAC." Since I was not allowed to read the resolution, I could not say for sure if that is true or not. However, my experience with resolutions is that they do one or more of four things: they are for something; they are against something; they commend something or someone; or they condemn something or someone.

But the most "curious" thing of all was the insistence of NAPVI officers that NAPVI was really "independent," that it did not have any ties or any obligations to anyone and specifically not any to the American Foundation for the Blind. In light of the evidence, I can only say that either the NAPVI board members are incredibly naive or they have the mistaken notion that other parents and the public are too naive to see through their words to the reality of the situation.

As I left the NAPVI parents meeting late Saturday afternoon, I reflected upon my experiences and what I had learned. As I did, I recalled how one parent during the meeting had made the comment, "I'm not a crusader," implying perhaps that they were not naturally inclined to fight in social causes, or perhaps for any cause at all. I believe this meeting has made it quite clear that whether we feel cut out to be a crusader or not, our blind children's futures are being determined now by a struggle between two competing views of blindness: blindness as inferiority or blindness as characteristic and nuisance.

For our children's sake, we cannot allow ourselves to be unwittingly used in this struggle. We should read, study, talk, ask questions, be informed and then make our decision: what do we really believe about blindness, and whose guidance will we seek?

As you do that, remember you are not alone in your concern for your children. Members of the NFB, blind adults (many of them formerly blind children) and other parents of blind children, care about your child. The activities carried out by the NFB such as public education about blindness, voting rights, minimum wages, more and better job opportunities and better educational opportunities for the blind will make a better world for our children. you the opportunity to obtain, what I consider to be the single best source of information about blindness. Oh yes, we have mentioned it in several articles, but considering its' significance in the field of blindness that just isn't enough.

I am speaking, of course, about the Braille Monitor. The Braille Monitor is the regular monthly publication of the National Federation of the Blind. It is written from the perspective of the organized blind. The Braille Monitor is available in print or on disc (see order form following this article) to members aad non-members alike. That tells you what it is, now why should you read it?

Note: If you would like to read the article, "More Meetings with NAC and the AFB: The Picture Seems Complete," from the August issue of the Braille Monitor, just fill out the form on page 21. There will be no charge for the issue.

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