The Braille Monitor                                                                                               _June 1997

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Who Are the Experts?
Comments on Pregnant Women and Blind Consumers

by James H. Omvig

From the Editor: This article was first printed in the August/September, 1983, issue of the Braille Monitor and was updated in 1996. Because it follows so closely on the reasoning of the preceding article, we are reprinting it here. Here is what Jim Omvig says:

An ancient proverb says that, when the blind lead the blind, they will both fall into the ditch. Apparently the minds of some of the great thinkers of the past were about as out-of-touch on the subject of blindness as some of the so-called great thinkers of today. For, in truth, even though we are often told differently, it was only when the blind began to lead the blind that we started the climb out of the ditch together.

In that climb from the ditch we have come together in an organized way, and we have shared common experiences and ideas. We have pooled our thinking and have developed a sound philosophy and a vast body of knowledge on a variety of major issues concerning blindness. Among other things we know what it takes to operate a quality rehabilitation agency for the blind.

Since the recent publication of my article about what the ideal agency for the blind should be if it is truly to make a difference in its consumers' lives, I have been involved in several interesting and lively discussions on the topic. The most recent of these occurred at our Minnesota affiliate's state convention, where we discussed the subject yet again.

The panel discussing the issue included an official of the Minnesota state agency for the blind, who spoke before I did. From comments he made, it is clear that he has a deep interest in what is happening to blind people in America today and that he is an enthusiastic supporter of the National Federation of the Blind.

Even so, he went on to remark that the topic of "what constitutes the ideal agency for the blind" is a very difficult one. He described several problems which exist within the current service-delivery system, but he never really offered his notions of what the ideal agency should be; he just maintained that it is a difficult topic--what lawyers call a "knotty problem."

In my presentation I told the previous speaker that I do not regard the topic as difficult at all. In fact, it is simple, well-known, and clear-cut: The best governmental structure for a state agency is known; the ideal philosophy with which an agency should operate is known; what should be taught at an adjustment center and who should teach it are known; the proper role for the agency professional is known; how best to educate employers and the rest of the sighted public about blindness is known; and it is also well known that certain existing agency practices hurt rather than help blind consumers and should, therefore, be eliminated. In other words, the solution has been tried and tested, and it works! (Since my views on this topic appear in the article, "What We Can Expect from a Commission for the Blind," I shall not repeat them here.)

I went on to say, however, that, while describing the ideal agency for the blind is not difficult at all, a different question is very real and very difficult--"How can we get the professionals who run the agencies to listen to the blind and to accept and understand the information which already exists? And after that how can we get them to use this previously tested and proven knowledge in the agencies which they administer?"

At this point our discussion shifted from the ideal agency topic to the question of "consumer input," and ultimately I presented an analogy which, while a bit fanciful, is instructive:

Let us suppose, I said, that we have a group of doctors (obstetricians) who have decided to gather the best available data on the topic of the techniques and medications most effective for childbirth: general anesthesia, regional anesthesia, prepared child birth, underwater birth, or something else.

Suppose further that these doctors truly wish to provide the best possible care and treatment for their patients. And, finally, suppose that they are a remarkable bunch who are completely objective and open minded--no bias, no prejudice, no vested interests to protect, no axes to grind, no political agenda clouding the discussion, no pseudo science to be defended, and no fragile egos (with their accompanying feelings of superiority and condescension). Wouldn't it be a joy to encounter this group?

This enlightened, if unusual, group would have various choices to make in determining how best to acquire the desired knowledge. First, they could simply decide to discuss the issue among themselves and reach a consensus, or they could be democratic and take a vote. But this process would give only a limited view based upon their own attitudes and experience.

Of course, they could put the question to the professors in their medical schools. But, while some new thinking might be forthcoming, for the most part this would be the same old stuff, since the college professors would be the very people who had taught them and who had, therefore, given the doctors their current information and attitudes.

One forward-looking doctor might say, "Well, then, let's ask the man on the street." To which another doctor, probably a woman, might reply, "Why ask men? They haven't had babies! They actually don't know the first thing about it! I think we should ask women!"

After some discussion some member of this enlightened group would see the next logical step and say, "But you can't just ask any woman, since not all women have had babies! No, I think that the only really valid source of information will be those women who have had babies and can discuss their actual experiences."

It might take a little time and discussion to move beyond this plateau and to arrive at the final point in this chain of logical thought. But, ultimately, the real thinker in the group, probably the woman, would say, "As I think about it, I don't believe it would be enough simply to raise our question with women who, while they have had babies and received our services, remain isolated. As individuals many women who have had babies still have never really had the opportunity to think about what is best--they only know about what has happened to them. They may have no familiarity with the methods and procedures which they have not experienced. Many times, because of their limited experience, such women would not even be aware of the various techniques which have been developed and tried by other doctors and other women in other places."

At this point we might have the final breakthrough. Another doctor might say, "I think I've got it! If we really care about what is best for our patients, we can't just sit here and decide among ourselves by taking a vote; we can't seek advice from men; we can't seek the opinions of women who have never had babies; and we can't even turn to just any women who have had them! The solution for us is to find a group of women who have borne children and who have also seen fit to join together with others to discuss the variety of issues concerned with motherhood and childbearing. By bringing together those women who have experienced a variety of procedures and techniques into a group where the issue is freely and openly discussed and debated, a body of knowledge would surely exist based upon the best thinking of those who have experienced our services in the past and who have seen fit to join together for concerted action. This group would surely know best what services our patients bearing children need and deserve."

Another doctor might wrap it up by saying, "Well, you are all aware of the existence of the National Federation of Mothers Concerned with Childbearing. They have been around since 1940, but I have always been told that they are too militant and that I shouldn't pay much attention to what they have to say--after all, it has been pretty generally understood in the field that they are just women who have had babies, not professionals like us, so what could they possibly know? But I've got to tell you that, after our discussion here today, I'm all for talking to those organized women! I'm convinced that they could give us reliable data."

End of analogy; end of parable; end of parallel.

In no way am I suggesting that blind people who receive services from state agencies are patients needing doctors. Far from it! We are simply ordinary, normal human beings who happen to be blind and who may be in need of effective training if we are to achieve success and full participation in the ordinary pursuits of life.

What I am suggesting with this parallel is simple--as it is with expectant mothers, so it is with the blind. If you are the professional who has an honest desire to provide the best possible assistance to the greatest number of blind people you serve and who really wishes to know what is best, you will not simply discuss the issue of quality or ideal services in a vacuum. Nor will you try to find all of the answers in a meeting of professionals. You will not seek your counsel from college professors or from sighted persons on the street who have no knowledge or experience of issues concerning blindness. You will not seek your counsel from persons who, while they are blind, have never been the recipients of independent living or rehabilitation services for the blind, and you will not put much stock in the advice which you might receive from those blind people who have received services but who are limited, isolated, and totally lacking in broad knowledge and experience. If I don't know what services other blind people have had, if I don't know what happens in other states, if I don't even know what can be done under the law, what possible value can my opinions have?

No, if you truly have an open mind and an honest desire to acquire the best possible information about services for the blind, you will go to the source possessing a vast body of knowledge based upon actual experience and the pooled and distilled wisdom and thinking of thousands of blind people. You will seek out the organized blind.

The information about the ideal agency for the blind exists, and it works. Wouldn't it be a tremendous breakthrough in the field of work with the blind if we were to encounter a remarkable group of rehabilitation professionals like those enlightened doctors in my analogy-completely objective and open-minded, no biases, no prejudices, no vested interests, no axes to grind, no political agenda, no pseudo science, and no fragile egos.

I suppose it will be a long time before those of us who are blind will have the opportunity to encounter such a remarkable group--at least, as a group. However, we must be gratified in the knowledge that more and more individuals involved professionally in work with the blind are coming to see the light and to know the truth.

So who are the experts who should counsel the professionals? Why, they are the blind, the organized blind, the National Federation of the Blind!