Helping one another: speculative history of self-help movement, Archives of Physical Medicine and Rehabilitation 60: 452-456, 1979.
The Independent Living Movement represents a direct challenge to current notions of rehabilitation. It is a unique challenge, spearheaded not by new technical advances but by a new social awareness, and not from within by medical personnel but from without by lay groups. In another sense, however, it is but the latest evolution of an old theme in American life-the notion of self-help. This paper traces the history of self-help, to illuminate the problems and prospects of the Independent Living Movement. (From the Department of Sociology, Brandeis University, Waltham, MA, and the Boston Self Help Center, Brookline, MA.)
The roots of mutual-aid groups harken back to the frontier days of the United States. As early as the first part of the 19th century, Alexis de Toqueville noted the American penchant for joining groups (1) and by 1900 a directory listed over 250 independent national voluntary lay organizations. For most of these organizations, be they men's service clubs, women's clubs, or others, the goal of helping, though often central to their avowed reason for being, was rather external to the members themselves. Those to be helped were the community in general or some specific cause or disease.
The shift from voluntary associations for helping others to mutual-aid organizations to help each other was, however, not an easy one. Though some have found examples of such activities in early agricultural cooperatives, (2) the mass waves of immigration of the late 19th and early 20th century were the clearest stimuli to their proliferation.(3) Thrust into a nation in which there were few formal services to aid in their survival, the new arrivals turned to one another. Their response was the creation of mutual-aid societies where membership was based primarily on sharing some explicit social characteristic: race, religion, country of origin. Interestingly, by far the most "popular" of their services, though basic to life, came at the end of it: namely burial and funeral rites. A far-distant 2nd service was the lending of money. Thus, in these early self-help groups, the aid given to one another was of the most material sort. From this tangible kind of service, aid of a more social or psychologic nature was truly a giant step.
The difficulty of this step is illustrated in the history of that best-known of illness-oriented voluntary organizations: The March of Dimes. For here, where the rehabilitation problems of young children were enormous as well as controversial, there was no "coming together" of the afflicted. When it is remembered that polio patients were not isolated from one another and even had clinics, wards, and hospitals devoted to their exclusive treatment, then the fact that no support organization, however informal, ever arose or was encouraged is even more surprising. In retrospect it seems that there was a kind of undertone that such activity might be considered inappropriate. Everything that could be done was being done for you. In a distortion of the recent slogan, "Do your own thing," it became, "Do your own suffering and managing, and keep your problems to yourself."
Three Barriers To Self-Help
From such examples I infer that there must have been a number of barriers which impeded the development of medical self-help organizations. Three barriers that seem most basic were:
1) the nature of the problems to which such groups were devoted;
2) the nature of the help required in dealing with the problems; and
3) the nature of the personnel best suited to give that help.
On several levels the diseases with which mutual-aid societies dealt were long considered socially unacceptable. Most concretely the groups dealt with issues of "loss" and "deficiency," from a missing body part or function - the ability to walk, to see, to hear, to speak, to urinate, to defecate - to the most taboo of psychologic traits, the inability to control certain aspects of one's behavior, such as gambling, drinking, drugs, sexuality, mental illness, obesity. There is no doubt a continuum of taboo problems, with several, such as hearing, seeing, and walking, being far less stigmatized than others, such as facial disfigurement or colostomy.
But toleration for being less than perfect even in these respects is a very recent phenomenon. Only in the current generation of teenagers is the taunt, "Boys never make passes at girls who wear glasses," a ludicrous one. On the other hand we, the older generation, are still "hung up" on even the "most accepted" of handicaps: We speak louder to the deaf, avoid mentioning the beauty of scenes to the blind, and reprimand our children for staring at someone with a limp. All of this is complicated by our country's commitment to a belief that there is no problem that cannot be ultimately overcome. Thus unsolved problems or diseases come to represent a failure, and the bearers or survivors become constant reminders of this inadequacy. As such, a general response was to put them as far as possible out of sight and out of mind.
A 2nd barrier, the nature of the help that such problems entailed, was also threatening. For the idea of being in need of help is not an accepted theme in the Western world: No aphorism regarding help is known so well as "The Lord helps those who help themselves." Independence was the byword. Achievement against all odds and all comers was the measure of success. Horatio Alger was for many years the embodiment of the American ideal -- a person who overcame his background to attain success. So too the folk heroes of chronic disease were not the millions who came to terms with their problems but those few who were so successful that they passed -- the polio victim who broke track records, the one-legged baseball pitcher who made the major leagues, the great composer who was deaf, the famous singer who had a colostomy. They were all so good that no one knew, and therein lay part of their glory.
In fact, it may be that the emphasis on such successes has done more harm than good for the majority of people with disabilities. For it masks the real kinds of help that the sufferers of chronic conditions need. Management in daily living does not involve doing dramatic tasks, but mundane ones. And these examples of someone overcoming a handicap once and for all certainly masks the time element required for such help. Most of this aid can neither be given nor utilized in a single encounter or short series of encounters. And the problem is not, for the majority, a temporary one but one that will last for life. That is what chronic means! How uncomfortable this makes people feel is frequently seen in the negative response to mutual-aid organizations which state this lifetime commitment explicitly, such as Alcoholics Anonymous, Synanon, Re-Evaluation Counseling, and the current Independent Living Movement.
The 3rd barrier to any widespread acceptance of mutual aid was the nature of the personnel involved in giving help -- our enormous worship of the technical expert, especially the physician. For modern medical care has been and to a large extent still is, the exclusive province of the physician. It has been hard enough for the physician to give up tasks, and inevitably some responsibility, to a growing army of allied health professionals. But these were at least nominally under his authority. Self-help organizations, on the other hand, were essentially lay groups and as such were largely outside medical control. As a result, any good that they could do was scarcely examined. Even when positive results of mutual aid were reported, as in group therapy and encounter groups, they were given little professional recognition and were dismissed as second-choice alternatives. At best they might be viewed as nice things for patients to do to keep themselves occupied and out of trouble. Such forms of help represented self-treatment and this, next to the use of chiropractors, was regarded by the ordinary providers of medical care as perhaps worse than no help at all.
With such formidable forces ranged against the mutual-aid organizations, how did they ever get off the ground? There is no single answer, but a number of events certainly pried open the door. For example, World War II had an enormous impact upon our ability to ignore the seamier aspects of life. Once and for all our insulation was broken. All of us, but particularly those in the Armed Services, confronted different cultures and thus different ways of defining as well as handling problems. In short we saw viable alternatives. Certainly one could argue that the civil rights movement truly got under way here as blacks and whites were forced to come to new definitions of themselves and others. (One might have expected this to have taken place much earlier with the great waves of immigration which inundated our country, but their influence was mitigated both by the vastness of America which permitted great isolation of most "natives" from these groups and by the philosophy of Americanization, which, accepted by the immigrants and encouraged by the residents, consciously attempted to extinguish all salient aspects of the heritage from which they came.)(4)
World War II, however, did more than this. It forced a confrontation with the most massive job of rehabilitation we have ever faced and this made certain kinds of physical handicaps no longer a personal but a national responsibility.
The A-bomb itself and its successor, the H-bomb, provoked the deepest questioning of who we were and what life was all about. At least 1 outcome of this searing of our social conscience was a financial commitment to the solving of life's problems. So in the postwar era, the National Institutes of Health flourished and some form of national health insurance became increasingly inevitable.
The change in the nature of help that might be needed was being challenged also by certain undeniable realities. With a host of infectious diseases coming under control, more and more people were surviving to middle age and beyond. Thus many latent or previously "numerically insignificant" disorders became more manifest -- arthritis, diabetes, mental illness, heart disease, multiple sclerosis, stroke, cancer. Moreover, these were disorders which were more often disabling than immediately fatal, and for which no "magic bullet" either in prevention or in care was forthcoming. In short, they were problems which should require medical management for extended periods of time, some for life.
But there was something more to these disorders; they fundamentally altered the doctor-patient relationship. There was a shift from cure to care. No longer did treatment take place with the doctor doing and the patient receiving. To succeed at all, the patient had to help and, as in psychotherapy, to be an active participant. In short, treatment was something in which the patients themselves had a role - something that had to be recognized by them as well as their former "caretakers."
The Advent of Psychiatric Impact
The coming of age of psychiatry had another impact, for it made abundantly clear the importance of behavior in all aspects of disease - from how one gets sick to whether or not one recovers. In a sense it reemphasized the oneness of a person's mind and body - a phenomenon so evident in the almost ever-expanding category of disorders called psychosomatic. Thus, terms like "support" and "relationship" could no longer be something in medical care to be done if one had the time, but were at the very core of helping. And yet this was not an activity for which many health personnel felt trained or inclined. Even were they willing to actively undertake such a role, it is not clear that numerically they would ever fill the need.
For given the current demand, the shortage of physicians is insurmountable and we are too committed to a line of scientific inquiry and specialization to ever turn back. No matter how many doctors now choose the path of primary care or community medicine, doctors in general continue to be more specialized rather than less. Thus partly by default and partly by delegation, many medical tasks - from history-taking to prescribing drugs, from giving injections to performing certain forms of surgery, from teaching to counseling - ultimately came to be done by people who were not MDs. The biggest jump, however, was not in the delegation of responsibility to less-trained personnel but in the taking over of many therapeutic tasks by people who had "been there" or were still "there." In short, the "expertise" of patients to help themselves and others began to be recognized.
The recognition of such expertise is at best a struggle. The world in general and the medical world in particular still too often feel they are in the best position to know what is in the best interests of the disabled. Often they contend it is their years of experience and lack of personal involvement which makes them see our needs more clearly. A personal experience shows how occasionally ludicrous this claim can be:
I entered the workshop of a prosthetist who had been in the business for over 50 years. Noting that I had had polio and use a cane to walk, he motioned me to come near.
He: "I wonder if you'd try this cane." I did so.
He: "Well, what do you think?"
IKZ: "It seems solid enough."
He: "Now watch this." He then proceeded to take the cane from me and pushed a little button about 3 inches from the handle, and out popped a 1 2-inch blade. Before I could say another word, he went on: "This one is even handier; look!" Taking another cane, he also pressed a button and now brandished what might be called a 10-inch iron blackjack. "You know," he went on, "in times like these, crime in the streets and all, things like this self-defense cane should be pretty handy."
IKZ: "Yes," (in my best tongue-in-cheek fashion) "particularly if the thief lets me lean on him for support while I dismantle my cane." In a certain basic sense I feel that no matter how sophisticated or even understanding the unafflicted become, the sufferers will ultimately have to see to their own needs by banding together and pushing. This is not merely because the general public does not care but because, in a real sense, they do not know. It is not accidental that major changes in the architecture of public buildings have been pushed by paraplegics, reduction of drug maintenance costs by "mended hearts," extension of medical insurance coverage by ostomates, new speech therapies by the laryngectomies, or a new profession, enterostomal therapy, largely created and staffed by former patients. Thus public interest is not stirred by large members of "problem-bearers" alone. There have always been millions of poor, of black, and of consumers, as Michael Harrington has pointed out in "The Other America's (5) It has always taken something more to stir society to action.
Thus while there is some recognition of the legitimacy of the self-help movement and the people it represents, the acceptance of the voices of the disabled is grudging at best. Even with the greater attention to problems of chronic disease and disability, there is a way society speaks of them which perpetuates a separation and a distancing. It seems that, to justify rising health costs as well as the financial expenditure that it will supposedly take to remove current architectural and programmatic barriers, we must quantify the extent of the problem: And yet in so doing we distort an important reality. By trying to find strict measures of disability we make into dichotomous categories what are indeed a series of blurry, continually changing continua. By agreeing that there are 20 million disabled or 36 million, or even half the population, in some way affected by disability, we delude ourselves into thinking there is some finite (no matter how large) number of people. In this way, both in the defining and in the measuring, we try to make the reality of disease, disability, and death problematic, and in this way make it at least potentially someone else's problem. But it is not, and can never be. Any person reading the words on this page is "at best" momentarily able-bodied. But everyone reading them will, at some point, suffer from at least one or more chronic diseases and will be disabled, temporarily or permanently, for a significant portion of his or her life.
That we persist in this denial means that the necessary steps to undo this process are likely to be difficult to acknowledge as well as to undertake. But at least 3 steps suggest themselves. First, we with handicaps and chronic disabilities must see to our own interests. We must free ourselves from the "physicality" of our conditions and the dominance of our life by the medical world.(6) In particular, I refer to the number of times we think of ourselves and are thought of by others in terms of our specific chronic conditions. We are polios, cancers, pares, deaf, blind, lame, amputees, and strokes. Whatever else this does, it blinds us to our common social disenfranchisement. Our forms of loss may be different, but the resulting invalidity is the same.
While organizing around specific diseases may have great benefits for raising research monies, it has divided our strength and pitted one disease group against the other. Not only has this led to an overspecialization of services but to an underdevelopment of our consciousness. It has made us feel so dependent on others (the medical world for treatment, the general public for money) and so personally accountable that it has made us feel that we have no rights. We, patients all, perhaps the last and potentially the largest of America's disenfranchised, must organize on our own behalf. Cutting across specific disease entities, we must create advocacy, consciousness-raising, counseling, resource groups.(7) And wherever and whenever possible, staff members alike must have a chronic disease and/ or physical handicap. I am not claiming that no one else can help or understand, but that, as with women and blacks, we are at a point in history where "having been there" is essential in determining where to go.
The self-help movement is, however, but 1 part of the struggle. It is a prerequisite for change, but neither the sole nor the sufficient avenue. We must deal as much with social arrangements as with self- conceptions; one, in fact, reinforces the other. Thus the problems of those with a chronic disability should be stated not in terms of the individual defects and incapacities affecting our physical functioning, but in terms of the limitations and obstacles placed in the way of our daily social functioning. What should be asked is not how much it will cost to remake a society completely, so as to be accessible to all with physical difficulties but rather why a society has been created and perpetuated which has excluded so many of its members.
There is a growing awareness that this exclusion is not an accidental byproduct of industrial society. There is an ideologic compatibility between the rise of capitalism and certain Western religions which have continually justified the hierarchical arrangements of people through "hard work" or "the grace of God." When the notions of religion and law were beginning to lose their power as absolute arbiters of important social values, Darwin, perhaps unwillingly ushered in the age of biologic determinism. One critic of the times realized the social import of his work by exclaiming in surprise: "Sir, you are preaching scientific Calvinism with biological determinism replacing religious predestination." The fixity of the universe and/or hierarchic relations once attributed to God was now being justified by scientific inevitabilities. In the ensuing hundred years, there has been an expansion of the influence of science in general and in particular of "medical science," until they have in some ways replaced religion and law. Where once a social rhetoric made reference to good and evil, legal and illicit, now it is to "healthy" and "sick."
We are now experiencing a medicalization of society, and with it medicine as an agent of social control. And while some have argued that this is a more humane and liberal way to deal with social problems, the notions of health and illness still locate the source of trouble and treatment in individual capacities, not social arrangements.(8)
In the most concrete terms, to have a portion of our population declared physically unfit serves many important social functions. In still another way it is important to recognize in this country that health occupations are the fastest growing category of employment, the medical world is in the highest income bracket, and health-related industries are amongst the most profit making.(9) Crassly put, "Some people are making money off of the sufferings of others." In these 2 ways, economic and political motives of the society have come to reinforce one another. And until the day that no one benefits economically, socially, or psychologically from someone else being beneath them, there will always be categories of exclusion.
Regardless of whether we join activist groups, support those who do, or seek in other ways to change the sociopolitical-economic structure of America, we must at the very least look into ourselves. For if morality or justice is not sufficient as a motivating force, perhaps personal survival will be. All of us must contend with our continuing inevitable vulnerability. Not to do so can only make us further unprepared for the exigencies of life. For when we grow old, and with today's technology "survive," sick and disabled, for increasingly longer periods of time, we will experience a triple sense of powerlessness: First, because of our very condition, we will indeed be more physically and socially dependent. Second, through our previous denial, we will have deprived ourselves of the knowledge and resources to cope. And third, from the realization of what we will have done to those who have "aged" before us, we feel we have lost our right to protest.
To the extent that we at all feel we are receiving our "just deserts," it is very hard to demand any redress of the situation. We are left to the largesse of others to forgive us and to help us. Is it thus any wonder that study after study reports many of the elderly as feeling that their life has been worthless? A sour ending to any story cannot help but result in a depreciation not only of the present but of the past. In this light, it is especially important to remember what Erik Erikson said (10) about society's continual denigration and isolation of the aged: "Any span of the (life) cycle lived without vigorous meaning at the beginning, in the middle, or at the end, endangers the sense of life, and the meaning of death in all whose life stages are intertwined." So too what we do the physically handicapped and chronically ill, we do only to ourselves.
1. De Tocquevillc A: Democracy in America, Heffner RD (ed). New York, New American Library, 1961.
2. Katz AlH, Bender EI: Self-help groups in western society,history and prospects. J Appl Behav Sci 12:265-282, 1976.
3. Handlin O (ed): Immigration as a factor in American history. Englewood Cliffs, NJ, Prentice-Hall Inc. 1959.
4. Glazer N, Moynihan DP: Beyond the Melting Pot. Cambridge, MA, MIT Press, 1963.
5. Harrington M: The Other America: Poverty in the United States. New York MacMillan Co Publishers, 1962.
6. Illich ID: Medical Nemesis: the Expropriation of Health. New York, Pantheon Books Inc, 1976.
7. Bowe FG, Jacoby JE, Wiseman LD: Coalition Building. Washington DC, American Coalition of Citizens with Disabilities, 1978.
8. Illich I, Zola IK, McNight J, Caplan J, Shaiken H: Disabling Professions. London, Calder & Boyars Ltd, 1977.
9. Health Policy Advisory Committee (ed): American Health Empire: Power, Profits, Politics. New York, Random House Inc, 1971.
10. Erikson EH: Insight and Responsibility, New York, NW Norton & Co Inc, 1964.