Braille Monitor January 1985
by C. Edwin Vaughan
(Note: This is a revised version of an address given at the 1984 convention of the Missouri affiliate of the National Federation of the Blind. Dr. Vaughan is the Director of the Center for the Study of Aging and an Associate Professor of Sociology at the University of Missouri at Columbia. He is blind, and he is a Federationist.)
When I mention the National Federation of the Blind to friends from other states, I sometimes hear them say that they don't join either because it's a personality cult, or it's full of troublemakers, or it's too much conflict oriented. Professionals working in the field of blindness frequently give as reasons for not participating that they must keep a professional orientation, that they cannot be advocates for groups, that conflict situations are harmful to agencies.
My own perspective, and this is not uncommon in sociology, is to assume that conflict is normal in organizations. One approach would focus on conflict as the place where important things are happening. If you want to understand what is going on in organizations, don 't look only at the organizational charts and the material that you read in annual reports--which describe the good things that are happening. You need also ask these questions: Where are the trouble spots? What are the complaints about? And what are the problems? I occasionally read The Consumer Report If you read that magazine, you know how critical its writers and members are of products offered to consumers. Cars, stereos, dishwashers, everything gets a thorough going over with a fine tooth comb. Manufacturers may not like the outcome. However, in the marketplace they dare not ignore consumer complaints. But that frequently isn't the case in the field of human service delivery. Consumer responses are taken less seriously. The consumer of human services has few other choices--other markets or other providers. The conflict which results when consumers complain about or reject services is uncomfortable for the organization, whether the auspices are private, public, or not for profit. The organizational source of this conflict is the focus of this presentation. First, so you understand my own values, I'm now forty-five years old and have worked in, dealt with, or been part of large organizations since I was sixteen or seventeen. I first encountered rehabilitation services at the age of sixteen in West Virginia. I have worked as an elected public official and in large educational and religious organizations. I have studied and observed many social service delivery agencies, and still, almost every time I am in the presence of caregivers I feel a little angry. I 'm suspicious and expect nonsense. I expect to be offended as a
human being. I try to hide it, but deep down I am almost cynical about the services I expect to encounter. I don't consider myself unprofessional, so why in the world should a person of my many years experience feel anger, resentment, and suspicion when I enter the setting of organized services? On the assumption that I am not too unusual, what is it about social services that evokes such feelings? Admittedly not all respond as I do, but I have the feeling from your responses that some of you know what I'm talking about.
Before proceeding, I want to express my appreciation for the many tremendously helpful services I have received in my life. I have encountered some very helpful organizations and people. There are many exceptions to my complaint. I wish to call your attention to the organizational sources of the conflict which frequently arises between consumers and caregivers. We will analyze the coercive tendencies in organized service delivery settings which make caregivers appear insensitive and seemingly disdainful of consumer opinion.
One of my values is that in a democracy every citizen should be concerned about the treatment of minorities. Majority groups, people with power, always take care of themselves. In our society, majority groups at least pay lip service to the value that people with particular needs and problems have rights--including the right fully to participate in the wider society.
In the middle ages the tradition of caring about the less fortunate was called noblesse oblige. It was the obligation of the feudal nobility to take care of the blind, the lame, the infirm--people with infirmities deserving charity. The concern came from the top down. The same tradition has carried over into modern industrial societies such as ours. Services still come from the top down. It is presumed by those people at the top, be they wealthy people on foundation boards or those who sponsor public officials, that services will be appreciated. Furthermore, what services are needed are almost always defined by providers. Seldom in the history of human service delivery have definitions of quality and variety of services needed come from the recipients. Correspondingly, if you examine the values and ethical codes of caregivers, from Hippocrates to the present, they almost entirely evolve from or are perpetuated by the organizations of caregivers.
Individuals who work in organized service delivery settings learn the agency traditions and ideas concerning client needs. The situation--working with others in an inherited tradition results in consensus being a dominate value. It is in their interests to let the world go on the way it is. They favor consensus because it makes more comfortable a very large network of relationships in which they work. Everyone, from the highest boss to the lowest paid worker, understands that everyone should cooperate, and those who don't do not progress well in the organization. Conflict is undesirable, and those who encourage it are often viewed as deviant or irresponsible.
Some blind people, for example, may not belong to consumer groups because such activity might threaten the comfortable position in which they are employed or the comfortable world of social respect to which they aspire.
It's an understandable human response when people feel so vulnerable to evaluation procedures and to many other pressures that go along with keeping their jobs. The condition is one of the major organizational sources of conflict between service delivery workers and consumers.
A second organizationally produced source of conflict between caregivers and the recipients of care results from the specialization necessary to organized work settings. Job specialization means that the recipient of care sometimes feels treated as a particular type of "problem." The situation results in conflict with which most consumers have had experience. Another value of mine concerns what being human is all about. Each person has one life to live, and it ought not be diminished by people denying options or opportunities.
A related value of mine is that people have the right to be treated as equals-- that to be alive means to make decisions, to have choices, to look after one's own destiny; to be treated as a whole person and not be unnecessarily diminished by outside intrusions that aren't necessary. Unfortunately, and this is a real dilemma, people who try to provide services work in a bureaucratized setting which often narrowly restricts their flexibility in providing services. This means that their work is specialized; that they have a niche carved out where they take care of only one kind of problem--a need, a certain form to be filled out, a particular machine to be repaired. They sometimes respond to you as a category or type of problem--not as a whole person.
A third source of consumer resentment toward caregivers' efforts is more difficult to explain. There is an almost built-in contradiction between the interests of the recipient of care and the caregiver. Put simply, I can't help resenting situations where I think people are making a living at my expense.
In short, their livelihood, their well being, their careers are being built up as they and their agencies do more and more of those things which diminish me and other persons like me as whole persons. If there are aspects of rehabilitative or educational services which cause people like you and me to become unnecessarily dependent, it is irritating enough, and it is additionally irritating to see this activity being used to build the careers of caregivers. The meaning or significance of one person's life is being diminished while the importance and prestige of another person's life is enhanced as a career develops. The article on the electronic canes (March, 1984, Monitor) illustrates how money and fame are made at the expense of the blind. Professor Preiser of the Department of Architecture of the University of New Mexico probably possesses the milk of human kindness by the quart. He surely gets much attention from service clubs, related professional groups, and prospective manufacturers of his electronic cane system. However, this high technology, high cost idea would only create more dependency and perpetuate images of helplessness about the blind. Fred Schroeder observes in the March, 1984, Monitor, "The electronic guidance system presumes that the blind are incapable of finding their way and therefore must be aided by an elaborate, electronic custodian." To those who favor the maximal participation of the blind, such ideas are absurd and harmful.
The service career proceeds up the ladder spinning out more and more ways of providing service while finding "new needs" of ours that require attention. Most care recipients don't mind parasitical behavior--people making a living because of their situations--if the treatment is humane and does not take their wholeness and human dignity for granted. The feeling of resentment toward this situation is worsened when the consumer has few alternatives--when you have to play the game, when you have to go along with it, since you have nowhere else to go.
A fourth dimension of organizational life is the "professionalization" of everyone. Professionals develop statements of client needs whether it be in rehabilitation for the blind, engineering, medicine, social work--whatever. Every group of workers wants to call itself "professional" so they can act like other professionals. When you are a professional, no one else is qualified to make decisions in your area but you and your colleagues. No one else can better judge what is good for the client. A good example has recently been described in the Monitor. A group of workers decided that an otherwise qualified blind person could not be certified to provide mobility instruction. It's hard for consumers not to judge such decisions as self-serving even job protection. We should not discount the significance of such decisions for furthering the stereotypes about the blind and the dependency created when services can be obtained only from certain types of "professionals." Professional groups protect their turf not only from other competing professional groups, but particularly from consumers.
To summarize, if we combine the four sources of "built-in" conflict, it is not hard to comprehend the frustration and sometimes anger felt by blind persons and other consumers of social service programs. It is also not hard to understand the distrust and seeming fear that established interest groups express toward organized consumer education movements. So many dehumanizing tendencies result from the situation, it is rather amazing that so little overt conflict has occurred. Consumers are not treated as whole persons. They are denied access to the decision-making process which frequently affects their existence. They see professionals and administrators flourishing while they work for less than minimum wage. They have to submit to trivial and frequently conflicting, nonsensical procedures and put up with ignorance from service groups who find comfort from inflating their importance because of the disability .and "needs" of the unfortunate people they serve. Instead of being open to insights from consumer groups, the service delivery industry seeks security in organizational procedures and "professional norms." Professionals and administrators become rule or procedure oriented and are accordingly perceived by consumers as even more arbitrary in their responses.
Combine all of this with a well organized consumer group such as the National Federation of the Blind and occasional conflict is certainly understandable. The educational and organizational efforts of the Federation not only educate and enhance the dignity and self worth of its members. It makes them self-consciously aware of the kinds of attitudes and behavior which unncessarily limits the maximal participation of the blind in the wider society.
I was made aware of the organization through the efforts of Jackie Billey of the Connecticut affiliate. The Monitor attracted my interest, and I attended the recent Minneapolis and Kansas City conventions. I became increasingly interested, not because I like conflict, but because I was impressed by what I judged to be the enormous amount of good I think the organization does. If one goes back forty or fifty years in this nation's history and looks at how the blind were treated, and the self-images which resulted from this treatment, one cannot help but be enormously proud of the progress--progress in spite of the coercive tendencies of organized service delivery which I have described. Progress is not only being made, but being made by blind people themselves--frequently in spite of the opposition of organized and well-funded public and private agencies.
When agencies are not responsive, consumers have one resource to bring into play. Consumers can withhold cooperation. We can say "thanks, but no thanks" to demeaning or custodializing services.
If some agencies were building cars or TVs, they would have long since been out of business. But because agencies have a monopoly on resources and are involved in power politics, and because the consumers are those people on the bottom, agency personnel frequently think they can win this battle. But this battle is a struggle of the human spirit. The conflict is between those who would enhance themselves while diminishing others and those of the blind who wish to live ordinary, productive lives. Blind people have a right to make mistakes, to be autonomous, independent, and as successful as their individual talents permit.
I have heard Dr. Jernigan say that agencies that do not respond may have to be shut down. Some think this to be a harsh statement. However, it is the human thing to say. Unfortunately there is little middle ground. I am convinced that this movement is on the side of humanizing people and toward a more open society.
Fortunately, there are agency leaders and workers in the field of blindness rehabilitation who are open to the insights of consumers. Their interests and the interests of the general public point to the importance of the educational efforts of organized consumers.
We may be wrong or make mistakes. Sometimes we too have more to learn. The only grounds for progress are mutual respect and openness to dialogue. Agencies must be willing to question traditional values and programs.