Experts

Experts

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!