CONSUMERISM: IMPROVING THE SERVICE DELIVERY SYSTEM 
                           by Kenneth Jernigan 

The following address was delivered at the conference of the Penn-Del 
Chapter of the Association for Education and Rehabilitation of the 
Blind and Visually Impaired in Lancaster, Pennsylvania, on November 
17, 1989. 
 
There are those who say that nothing ever changes. I am not one of 
them. There are those who say that especially nothing ever changes 
in the blindness field. Again, I am not one of them. I believe that 
the past half century has brought unprecedented changes, not only 
in the world at large but also and particularly in the blindness field. 
Moreover, I think the changes have overwhelmingly been for the good. 
However, as is almost always the case, with progress has come problems--
both in the world at large and in the blindness field. 

Today we are talking about consumerism. The fact that we are, along 
with the popularity and recurrence of the theme, means that there 
is a felt need and that there are problems. In the summer of 1988 
I participated in a panel discussion on this topic at the AER convention 
in Montreal. Some of the things which I said at that time bear repeating, 
for they deal with basic questions--matters concerning relationships 
and performance in our field. 

At the National Federation of the Blind convention in Chicago in 1988, 
2,443 people registered as attendees. No other group has that kind 
of attendance. You know it, and I know it. In October of 1989 the 
National Federation of the Blind distributed (on cassette, on flexible 
disc, in Braille, and in print) over 29,000 copies of its magazine 
the Braille Monitor.  Again, no other publication in our field 
has that kind of circulation, or anything even approaching it. 
At my first NFB convention in 1952 barely 150 people were present, 
and we had no monthly publication. At that 1952 convention we spent 
more than fifty percent of our time talking about the rehabilitation 
system--what it was doing, how to improve it, and what we wanted 
from it. At our 1988 convention we had twenty-five hours of program 
content, and we spent a total of forty-five minutes (or three percent 
of the time) dealing with the rehabilitation system of the United 
States. Of that forty-five minutes, fifteen minutes was spent hearing 
from the federal Rehabilitation Commissioner; fifteen minutes was 
spent hearing from our Director of Governmental Affairs, who talked 
about problems blind people were having with the system; and the final 
fifteen minutes was spent with questions and comments from the audience, 
indicating their concern with the failure of the system to deliver. 
In short, only one percent of the program time was used to hear from 
the rehabilitation system, and none of the time was spent talking 
about threats to the system or how to save it. Why? Is it simply, as some
have charged, that the members of the Federation (all of the thousands and
tens of thousands of them--or, at least, their leaders) are negative and
destructive--irresponsible radicals and agency haters? No. Such a thesis
cannot be sustained. The facts do not support it. Let us turn again to the
statistics of the 1988 NFB convention. 

Kurt Cylke, head of the National Library Service for the Blind and 
Physically Handicapped, was with us for the entire week, and so were 
several of his staff. Day after day they answered questions, talked with
our members, and planned with us for the future. There was an 
atmosphere of partnership and mutual trust. 

Likewise, top officials of the Social Security Administration were 
present to speak and participate. The Deputy Commissioner for Policy 
and External Affairs had a forty-minute segment on the program, and 
other Social Security personnel conducted a seminar and answered questions 
for most of an afternoon. As with the Library, there was no tension 
or confrontation--only partnership and a feeling of shared interest 
and mutual concern. Moreover, with Social Security it must be remembered 
that many blind people throughout the country experience problems 
with underpayments, demands for return of overpayments, denial of 
applications, and similar difficulties; and more often than not, the 
National Federation of the Blind represents those blind persons in 
hearings to reverse Social Security's actions. Millions of dollars 
and numerous professional judgments are repeatedly called into question. 
Yet, there is no hostility--only friendliness and joint effort. 
On a continuing basis the National Federation of the Blind and the 
Social Security Administration share information, exchange ideas, 
and work together in a spirit of cooperative harmony. 

In short, our problems come only with the rehabilitation system, with 
some of the private agencies which function as part of that system, 
and with a group of educators. And even here there must be a further 
narrowing and focusing, for the problem is with the system itself 
and some of its more vocal spokespersons, not with all of its component 
parts or personnel. An increasing number of those in the system are 
beginning to take a new look and work with us. The very fact of our 
discussion here this morning is an evidence of that trend and the 
shift in thinking. 

This brings me to our topic, "Consumerism." I think blind 
people must have not an exclusive but a major role in shaping the 
blindness system. Otherwise, the system will die. Moreover, when I 
say "blind people," I do not mean just blind individuals. 
I mean democratic membership organizations of the blind. I 
mean effective participation by the blind, and the only way that can 
be achieved is through organizations of the blind. In a sense, of 
course, blind people have always shaped the system, as indeed they 
do today. In most cases blind persons started (or played a major part 
in starting) the agencies. There have always been blind agency directors, 
and individual blind persons prominent in the community have from 
the beginning served on advisory and policy boards and lent their 
names and prestige to funding and public support. 

Even so, the system has traditionally been custodial in nature and 
high-handed in dealing with meaningful input from the blind. This 
is why the system is in trouble. It is in danger of being absorbed 
into generic programs for the disabled, starving for lack of funds, 
and losing its position of centrality and perceived importance in 
the lives of the blind. This would not be the case if the average, 
thinking, responsible blind adult in this country felt that the system 
really mattered--excluding, of course, the blind people who work 
in the system. 

Let me be clearly understood. I am not saying that rehabilitation, 
training in mobility, assistance for the newly blinded, or education 
are not important--urgently important; for they are. Rather, I 
am saying that year by year more and more blind persons have come 
to feel that the system is not effectively providing those things and that
it is both unresponsive and irrelevant. Remember that I am talking about
the system as a whole, not individual agencies or particular people working
in those agencies. 

It is not, as a few have claimed, that the organized blind wish to 
take control of the agencies. It is, from the point of view of the 
system, far worse than that. It is that more and more blind people 
are coming to feel that, in the things that count in their daily lives, 
what the agencies have to offer won't help and doesn't matter. 
If I felt that the system was hopeless and that nothing could or should 
be done to improve it, I would not be here today talking with you. 
It is late, but if honest evaluation and forthright action occur, 
I think the system can be saved--and that it is worth saving. 

However, certain things must be said without equivocation. As a beginning, 
the agencies must change their attitudes about criticism and about 
the role of the organized blind in decision making. The matter of 
Fred Schroeder is a case in point. As most members of this organization 
know, Mr. Schroeder is blind. He is currently Director of the New 
Mexico Commission for the Blind. Before taking that job, he taught 
mobility professionally, received all of the academic credentials 
for doing so, and then was denied certification by this organization 
(the Association for Education and Rehabilitation of the Blind and 
Visually Impaired). The denial was based on the belief that a blind 
person cannot safely and competently teach another blind person how 
to travel--or, if you like, teach another blind person mobility. 
The National Federation of the Blind as an organization and I as an 
individual thought you were wrong in that decision, and we were entitled 
to that opinion. On the other hand, it was perfectly proper for your 
organization to believe that you were right to attack our position, 
but it was not proper for the members of your organization to attack 
us (as some of you did) on irrelevant grounds--denigrating our 
character and morals because of our beliefs. Of course, the same would 
obtain for our treatment of you. 

Moreover, workers in the blindness system must resist the growing 
tendency to hide behind the term "professionalism" and must 
stop treating "professionalism" as if it were a sacred mystery. 
There is a teachable body of knowledge which can be learned about 
giving service to the blind; but much of that knowledge is a matter 
of common sense, good judgment, and experience. Most thinking blind 
persons (certainly those who have been blind for any length of time 
and have had any degree of success) know at least as much about what 
they and other blind people want and need from the system as the
professionals do, and it must also be kept in mind that not every act of a
"professional" is necessarily a "professional" act or based on
"professionalism."
 
Just as in other fields in America today, the professionals in the 
blindness system must be judged on their behavior and not merely their 
credentials. Consider, for instance, the question of whether children with
residual vision should be taught Braille. After careful consideration the
members of the National Federation of the Blind believe that every such
child should at least have the option of being taught to read and write 
Braille. Some of the educators (especially those who cannot fluently 
read and write Braille) resist this view. Is their opinion a "professional"
judgment, or is it a decision based on vested interest? Whichever 
it is, the views of the organized blind are entitled to serious
consideration and not simply a brush-off, with the statement that the blind
don't know what they are talking about and that they probably have bad
motives and morals into the bargain. 

This brings me back to what I said about Kurt Cylke and the National 
Library Service for the Blind and Physically Handicapped. The libraries 
are not in trouble, and (regardless of economic conditions or changing 
theories) the libraries won't be in trouble. They won't because the 
blind of this country won't let it happen. And, yes, we have the power 
to give substance to our feelings. We don't control Kurt Cylke or 
the libraries. We don't want to--and besides, he wouldn't permit 
it. Neither does he control us--and for the same reasons. We support 
the National Library Service for the Blind and Physically Handicapped 
because we need it, because it gives useful and good service, and 
because its leaders understand that they exist to give us service, 
and that they have accountability to us. What I have said about the 
Library is also true of the Social Security Administration and an 
increasing number of agencies and individuals in the fields of
rehabilitation and education.
 
But the hard core of the blindness system still resists, to its detriment 
and ours. It tries to say that it speaks for the blind because the 
head of an agency is blind or because blind people serve on a staff 
or board. No great intellect is required to understand that in a
representative democracy only those elected by a group can speak for that
group; that the heads of agencies can have vested interests which 
transcend their blindness; and that when an agency can pick and choose 
individual blind spokespersons from the community, it can get people 
who will say whatever it wants them to say. 

Unless things change, I believe the central core of the blindness 
system will sink into obscurity and wither away, but I believe this 
need not happen and should not happen. Blind people (and that means 
the organized blind) must have a major voice in shaping the blindness 
system and the programs which operate within it--whether those 
programs be sheltered shops, residential schools, state agencies, 
or private nonprofit organizations. It must be a partnership--and 
not a partnership of dominance and subservience but of consenting 
equals--a partnership based on trust, respect, and mutuality. Let 
these things happen, and all else will follow. Let these things happen, 
and the system will thrive.
 
If those who work in the public and private agencies want broad support 
from the blind community, they must be responsive to the concerns 
which the blind perceive as important. Today there are relatively 
few major issues which divide the organized blind and the agencies. 
Twenty years ago it appeared (at least, on the surface) that there 
was at least one such issue--the National Accreditation Council 
for Agencies Serving the Blind and Visually Handicapped (NAC). But 
the problem was more apparent than real. NAC (despite its few remaining 
vocal supporters) has never been a significant factor in the lives 
of the nation's blind and is now rapidly becoming a dead letter and 
a subject only for the historians. It has never been able to get more 
than twenty or twenty-five percent of the nation's eligible agencies 
to accept its accreditation, and increasingly as the larger and more 
prominent agencies have pulled away from it, it has been forced to 
try to keep its numbers up by accrediting smaller and less well-known 
organizations. Let the dead be dead, and let the rest of us move on 
to better things. 

The real question we face is not how to resolve controversies between
consumers and the agencies but whether consumers can continue to feel 
that the agencies on balance are relevant enough and important enough 
for the consumers to nurture and save them0--in short, whether there 
can be common cause, shared purpose, mutual respect, and true partnership. 
Certainly the problems which face us are formidable and challenging. 
We still have a long way to go in improving the climate of public 
opinion so that the blind can have opportunity and full access to 
the main channels of everyday life. We have made tremendous progress 
in this area, but much yet remains to be done. All other things being 
equal, the job can best be handled through joint effort by the blind 
and the agencies, but handled it must be whether the agencies participate 
or not.  

Likewise, there is a broad spectrum of specific programs and activities, 
ranging from technology to education to employment, which need urgent 
and sustained attention--and again (all other things being equal) 
the job can best be handled by joint effort on the part of the blind 
community and the agencies. But one way or another, the blind intend 
to achieve full equality and first-class status in society. The question 
is what part the agencies will play and what relationship they will 
have with the increasingly powerful consumer movement.  

The story is told that one evening a nightclub patron approached the 
bandstand and said to the drummer, "Does your dog bite?  "No," the drummer
said, "he doesn't." The man reached down to pet the dog, and it almost bit
his arm off. He leaped back in a fury and said to the drummer, "I thought
you said your dog didn't bite."  "He doesn't," the drummer said, "but that
isn't my dog."
 
You see, the man asked the wrong question, so he got an unsatisfactory 
answer. Let us be sure that in dealing with consumerism in the blindness 
field we not only try to get the right answers but also ask the right 
questions. Otherwise, we may lose an arm.