|Partners for Mental Health - The Contribution of Professionals and Non-professionals to Mental Health (WHO, 1994, 110 p.)|
Hilda H. Robbins
Delegate-at-Large, World Federation for Mental
Alexandria, Virginia, U.S.A.
World Federation for Mental Health
The World Federation for Mental Health was founded in 1948 in London during the Third International Congress on Mental health. Its objectives are: (1) to promote among all peoples and nations the highest possible standard of mental health, defined in the broadest biological, medical, educational, social and cultural terms and prevent mental ill-health; (2) to promote the civil and human rights and welfare of mentally ill persons and their families; (3) to help and encourage member associations in the improvement of mental health services in their own countries; (4) to promote communications and understanding through advocacy and education through publications, consultation, meetings and international congresses; and (5) to further the establishment of better human relations in all possible ways.
Its membership consists of over 100 voting international and national associations active in mental health and over 100 affiliated non-voting organizations interested in supporting but not directly involved in the work of the Federation. There are, also, over 2500 individual members, including a wide range of professionals concerned with mental health as well as former patients and their families.
The WFMH policy-making body meeting annually is an Executive Board elected by an Assembly of members. Biennial congresses are central occasions for in-depth examination of the 'state of art' in mental health, but routine work is done through nine regional offices and central committees set up for specific tasks representing most of the important aspects of mental health which are reflected in the NEWSLETTER appearing 5 times a year. WFMH maintains official relations with most organizations of the United Nations system, including the United Nations itself and its bodies (UNICEF, UNHCR) and specialized agencies (WHO, UNESCO), etc. Especially close collaborative liaison is maintained with WHO.
"I know of no safe depository of the ultimate powers of society but the people themselves; and if we think them not enlightened enough to exercise their control with a wholesome discretion, the remedy is not to take it from them, but to inform their discretion by education."
Many people claim that volunteers, consumers (users of certain health services) and vocal advocates for social action have wrought more constructive change in the United States for the country than most of the military victories, many of the technological advances and all the political rhetoric. Of course those who make this unabashed claim have usually been the very volunteers, consumers and advocates who have been in the front line of successful activitism which brought about significant and long-lasting social change. But they make no apology for the claim nor did they see it as exaggeration or braggadocio.
This chapter will summarize some of the benefits of encouraging, supporting and nurturing volunteer activists; enumerate the basic principles of successful advocacy; and finally, will discuss some of the contributions of volunteers and consumers in the mental health field.
2. The Voluntary Sector in the USA
Regrettably these observations are derived almost entirely from experience and writings of activists in the United States but undoubtedly the principles are applicable and the examples could be multiplied a thousand fold by dedicated volunteers throughout the world. Apparently the voluntary sector has had more participants and perhaps stimulated more motion in the United States.
The voluntary sector, as it is frequently called, the independent sector, the nonprofit sector or the third sector is the least studied, the least written about, the least discussed of any part of American Society. However it is almost totally ignored in formal education. The President of Carnegie Corporation of New York went through 50 textbooks used in history, civic and social studies in elementary senior high, college and universities and found no reference to volunteers or voluntary and philanthropic organizations. A student can have an excellent education and never really grasp what this third sector means to free people.
The two counter-balancing sectors are the government and business or industry. In totalitarian states virtually all activity is in essence, governmental - and the little that is not, is heavily controlled or influenced by government. Almost everything is bureaucratized and is the subject to central goal-seating and rule-making.
In the nations that the world thinks of as democracies there is in contrast, a vast area of activity outside of government - and not connected with for-profit business and industry. Of course, both the for-profit business world and this third non-profit voluntary sector have many dealings with government. But both sectors vigorously defend their independence - recognizing that their very vitality depends on the extent to which they can hold themselves free of central bureaucratic control and regulation. Besides the vast body of health and welfare organizations it includes religious organizations, schools and colleges, libraries and museums, performing arts groups, neighbourhood organizations, citizens action groups, research centres and countless other categories. You get quite a potpourri when you realize the Girl/Boy Scouts, the Red Cross, the Philadelphia Orchestra, the Black Women's Caucus and our small but extremely active Neighbourhood Watch are all active ingredients of this very substantial voluntary sector, the common characteristics are that they are private, nonprofit and are devoted to serving the general welfare, not merely the self-interests of their members.
Although size is not the best measurement of this sector it is useful to note that in the US these institutions have annual outlays of more than $80 billion dollars. The giving in dollars is divided as follows:
Health and Hospitals
Arts and Humanities
Civic and Other
These figures are from Giving U.S.A. which is published by the American Association of Fund-Raising Counsel.
A survey by Gallup Poll of where and to whom we do our "volunteering" breaks down in a different way:
This same Gallup survey serves up the fascinating information that the woman who works outside the home is more likely to volunteer than the one who does not.
Many people believe that most giving is done by foundations and corporations, however, as important as that portion is, it represents only 10% of all that is given. Ninety percent comes from individuals. Another inaccurate assumption is that wealthy people represent the bulk of individual giving. In fact, about half of all charitable dollars come from families with income under $25,000. It is also interesting to note that families with income under $10,000 contribute about 3 times more of their income than do people in the $50,000 to $100,000 bracket (3.85% compared to 1.35%). And even families with income of $5,000 and less, the average given in 1981 was $238 which was about 5% of their income.
You may question why I go into such detail regarding the financial support of the voluntary sector. The answer is simple and fundamental - the health, viability and influence (translate all those adjectives as "power") is in direct ratio to the financial stability of the sector as a whole and the financial stability of every organization included therein.
Why is it so important that these thousands of organizations and millions of volunteers (over 50 million in the US) be nurtured and these enormous sums of money be spent wisely and usefully?
3. Functions of the Voluntary Sector
In the publication called "The Third Sector: Keystone of a Caring Society", Waldemar Nielsen, Senior Fellow, Aspen Institute for Humanistic Studies, enumerates and gives examples of what the voluntary sector "does for the spirit and character of our society and for the freedom and fulfilment of each of us". I will summarize and paraphrase from his work.
First and most obvious this sector delivers a range of vital services. These hardly need identifying but it is well to note that in so-called "welfare" services alone, over 37,000 agencies receive funds just from the United Way - funds which mean the alleviation of human distress for over 70 million Americans.
The second general function performed by the voluntary sector is that it strengthens the other two sectors and makes them work better. Institutions in this sector other than the religion often operate in parallel with the government agencies carrying out similar programmes. For instance both Harvard and Stanford Universities are small institutions compared to state universities in many of the States. They are nonetheless crucially important both because of their excellence and because they provide a standard of measurement, a stimulus that helps invigorate and improve both public and private higher education. The US Government uses the service systems of many private nonprofit organizations to carry out legislatively mandated programmes through grants and contracts.
Because of strong constituencies and a tradition of independence nonprofit institutions are an important check on the excesses of government and a corrective to some of its worse deficiencies. At a time when Big Government is more massive and more intrusive its collaboration with nonprofit agencies is a means of decentralization, of testing a variety of approaches and of generating the active participation and involvement of citizens. This can provide an antidote to the sense of powerlessness and alienation felt by considerable numbers of people today -particularly the poor, disabled, and ethnic minorities.
A third function is the humanizing force which is provided by the activities of volunteers in this sector. Volunteerism embodies a profoundly important concept -namely that a good citizen of a decent society has a personal responsibility to serve the needs of others. The concept is simple, universal, and ageless, and surely therein lies the distinction between a brutalizing society and a caring and responsible one.
Another way by which volunteerism serves to humanize our life is by providing the means of expression for all those spiritual, social and creative needs of individuals that government or the army or the factory or office simply cannot satisfy. This is one-of the most available and inexpensive ways by which each of us can go about our own personal pursuit of happiness.
The fourth function Nielsen calls the ultimate contribution of the Voluntary Sector - namely what it does to ensure the continuing responsiveness, creativity and self-renewal of a democratic society. Volunteers are a stubborn and belligerent protection against nonfeasance and malfeasance by government. They have been called the "mediating structures" standing between the citizen and the dangers of political and corporate misconduct.
4. Attributes of the Voluntary Sector
When organizing the umbrella organization called "Independent Sector", Gardner (1980) (1) listed what he called the "attributes of the voluntary sector that make it a powerfully positive force in the world". Those attributes, often quoted and reprinted, include:
4.1 Freedom from Constraints
Compared with government and business, the independent sector is relatively free. A group interested in a particular idea or programme does not have the need of government to deal with huge constituencies, nor the need of the mass merchandiser to find a lowest common denominator. If a handful of people want to start a new religious sect they need seek no larger consensus.
Americans have always believed that, within the law, all kinds of people should be allowed to take the initiative in all kinds of activities. And out of that pluralism has come virtually all of our creativity. Freedom is real only to the extent that there are diverse alternatives. The independent sector offers a rich variety of initiatives, goals, values and beliefs.
4.3 An Environment for Innovation
Every institution in the independent sector is not innovative; but the sector provides an environment for innovation and creativity. The sector provides a free marketplace whose attributes are in some respect not unlike those of the business marketplace. There is a continuous emergence of new ideas and initiatives. New entities can form overnight - and dissolve just as swiftly. There is freedom to try - and freedom to fail. There is in the sector something of the extravagant redundancy of nature - a thousand ideas can spring up in a single week. If 999 of them blow away before the week is over, so be it; the following week another hundred thousand will spring up. The ideas that survive the winnowing will be those that appear to serve some purpose.
In the typical bureaucracy, five new ideas a week would create a painful overload. No bureaucracy could permit a thousand ideas to spring up and if they did spring up it certainly couldn't allow most of them to blow away. To do so would imply that some official had failed - either in letting the idea spring up, or in not nurturing it after it did.
Virtually every significant social change of the past century - the abolitionists, the populists, the suffragettes, those who sought legislation against child labour, the civil rights movement, the environmentalists, mental health consumer groups - all these and many more sprang up in the nonprofit arena.
4.4 A Home for Nonmajoritarian Ideas
An idea that is controversial, unpopular or strange has little chance in either the commercial or the political marketplace. But in the loose world of the nonprofit sector it may very well find the few followers necessary to nurse it to maturity.
The sector is the natural home of nonmajoritarian impulses, movements and values. It comfortably harbours innovators, maverick movements, groups which feel that they must fight for their place in the sun, and critics of both liberal and conservative persuasion.
Institutions of the independent sector are in a position to serve as the guardian of intellectual and artistic freedom. Both the commercial and political marketplaces are subject to levelling forces that may threaten standards of excellence. In the independent sector, the fiercest champions of excellence may have their say.
4.5 Individual Initiative
The freedom from constraints, the pluralism and the constant emergence of new ideas, all provide a strong stimulus to individual initiative and responsibility. The sector preserves in the individual a sense of "the power to act." As in the for-profit sector there are innumerable opportunities for the resourceful to start something, explore, grow, cooperate, lead, make a difference. At a time in history when individuality is threatened by the impersonality of large scale social organization, the sector's emphasis on individual initiative is a priceless counterweight.
4.6 Opportunities for Participation
To deal with the ailments of our society today, individual initiatives isn't enough: there has to be some way of permitting a natural linkage between individual and community. In the independent sector, such linkages are easily forged. Citizens banding together can tackle a small neighbourhood problem or a great national issue. Obviously government provides, through the ballot, the basic constitutional instrument of participation. The enormously varied forms of participation that spring up in the independent sector are not more important - but they greatly increase the possibilities open to the individual.
4.7 An Instrument of Community
The past century has seen a more or less steady deterioration of American communities as coherent entities with the morale and binding values that hold people together. "Our sense of community has been badly battered, and every social philosopher emphasizes the need to restore it. What is at stake is the individuals sense of responsibility for something beyond the self." A spirit of concern for one's fellow is virtually impossible to sustain in a vast, impersonal featureless society. The independent sector permits the survival of mediating structures that often get squeezed out by modern large-scale organizations. Only in coherent human groupings (the neighbourhood, the family, the community) can we keep alive our shared values - and preserve the simple human awareness that we need one another. The countless organizations of the independent sector permit the expression of caring and compassion; they make possible a sense of belonging, of being heeded, of allegiance and all the other bonding impulses that have characterized humans since the prehistoric days of hunting and food gathering.
4.8 Grassroots vitality
At a time when the continued vitality of the society requires some measure of decentralization, the independent sector offers an escape from central control and central definition, an escape from clearances with a distant bureaucracy. It makes possible a significant role for relatively small grassroots structures.
4.9 The Monitoring of Government
The institutions of the sector are in a position to monitor, evaluate and criticize government. They can set standards. They can propose alternative public policies.
5. Principles of the Voluntary Sector
Each "movement" or "cause" develops a strategy to achieve "the goal" and this strategy must of necessity consider specific circumstance such as timing, available resources - both human and financial - the target for change, and the strength of opposition. But no matter what variables exists in different movements, no matter what the pace of action or the anticipated strength of the opposition there are a few basic principles which must be followed by any organization engaged in advocacy.
Time for good research could probably chronologize the ratification of these principles from the confrontations of the Old Testament through the Renaissance to the civil unrest of Eastern Europe on to the world-wide demands for non-nuclear coexistence. These principles have been tested, modified and retested for generations.
First, affective citizen action requires stamina. To have impact requires sustained effort. There is always a strong resistance to change - the status quo is a known situation - comfortably familiar. Experience has shown that a waxing and waning of enthusiasm soon saps the energy and effectiveness of any advocacy group.
Second, the movement must have a clear focus and set rigid priorities, lest it be pulled in all directions by tangential concerns. An advocacy organization can't just shout "see what we hit!", and announce, "that was the target." A cause worth getting excited about has only one or two specific goals that are true to the mission of the movement.
Third, the organization and especially the leadership of an advocacy agency must have accurate and detailed knowledge of how "the system" works. This thorough understanding is what puts a professional cutting edge on what might otherwise just be unbridled volunteer enthusiasm. When challenging or initiating legislation this means knowing the timetable of the government process. Legislation originating in the Washington office must go through an authorization process in one committee, then an appropriation process in another committee and finally an allocation process by the administration - an entirely different division of government. Following the passage of long and complicated legislation by the Parliament an even more tedious process of "writing the regulations" must be closely and carefully scrutinized less the intent of the legislation is not misinterpreted or manipulated to another viewpoint. Knowing where to pressure, who to pressure and when to pressure is the key to keeping the original goal in tact. Knowledge of the system includes knowing the structure, the personalities and the pitfalls. High-mindedness and blind emotion are not substitute for citizen skills.
Frequently for maximum effectiveness advocacy groups form coalitions and alliances. These are best seen as ad hoc arrangements for a specific purpose. With the freedom to tackle or challenge anybody and any action, and also the freedom to coordinate and cooperate and coalesce with any other group, a good organization can mobilize ten million people in one week. This can be one way of flushing out and identifying opponents at the same time that common allies are reinforced. Allies within the system or the institution which is targeted for change should not be overlooked.
Advocacy associations require visibility and they have learned that accusations and confrontations are not the most productive routes. Joining "the problem" and "the solution" as the subject of public discussion gains quantity and quality of supporters. If the general public is apathetic it must be aroused - if indignant, it must be channeled. Credibility must be ingrained in the leaders and all participants. Visibility without credibility makes for a very vulnerable position. Already available information must be researched and analyzed. Surveys and questionnaires require careful construction to acquire accurate and honest information. Use of specific facts, figures and case histories, are more persuasive than generalities. All these factors are useful to build credibility.
In addition to visibility and credibility, an advocacy organization must have accountability. Fiscal information, budgets and audited financial reports are required and must comply with Federal and State laws in order to be eligible for special tax advantages. Equally important is accurate reporting to all who are involved, the community and especially to those who provide financial support. A stable financial base is essential: causes aren't sustained and organizations don't survive by just doing good things.
Developing people power is an obvious component of good advocacy. Policy-makers look beyond angry shouts to see if there are real constituents and voters behind the noise. The more people involved the wider the web of influence.
Salaried staff must have a comprehensive understanding of social action and community organization. Staff persons can mobilize and maximize the efforts of the volunteers. Staff also provide the continuity as the volunteer leadership may change from time to time.
All the principles which have been discussed are important but endurance is the most important. Again quoting John Gardner "The first requirement for effective citizen action is stamina. The forces of social change are powerful and deeply rooted. To have any impact on them requires sustained effort. Next a group must focus to have impact."
Even with adherence to these principles a membership may become frustrated and even rebellious if the group is not organized for action: not to discuss, not to study, not to issue reports, not to spawn committees, not to pass resolutions, not to educate, not to preach and moralize. Dag Hammersjold, first secretary of the United Nations commented "In our era, the road to holiness, necessarily passes through the world of actions".
6. Voluntary Action and Mental Health
It is no accident that volunteers in the mental health movement have always included the strong voice of consumers of the services. What is known today as the National Mental Health Association was founded by Clifford Beers in 1909 as the National Committee for Mental Hygiene -the voice of the consumer. Shortly after Beers graduated from Yale University he spent three years involuntarily confined in several different mental hospitals where the conditions were deplorable and the treatment cruel and inhuman. Upon his release he wrote a moving book, A Mind that Found Itself (1981) (2). His vivid description of the way he and other patients had been treated became widely read. But he did not stop at just exposing a horrendous situation, he began to organize a vocal group of citizens who were willing to become identified with what was then (and still is for many persons), a stigmatized, frightening and unpopular disability - mental illness.
From that beginning in 1909 the consumer-citizen involvement and voice in all aspects of mental health and mental illness has had a tremendous impact on the changes that have shaped the overall system and the individual services. Through the years the various activities of citizen mental health associations have achieved noteworthy improvements at the local, state and national levels, and have provided a continuity of concern and an avenue for action for persons with mental illness. A second strong wave of citizen concern was fomented by the conscientious objectors of World War II who had been assigned to work in state mental hospitals. Their first-hand experience produced a flood of shocking exposes in the nations newspapers and magazines. The condition of America's mental hospitals and the inhuman treatment of mental patients had changed very little from the conditions suffered by Clifford Beers and described in his book 40 years before.
These men were a dedicated and determined corps who were in a position to mobilize strong support and in 1950 were able to merge the interest of several mental health advocates into what is now the National Mental Health Association. NMHA is now recognized as the health organization having the broadest base of activist lay-citizens in the country. The most significant part of that broad base has consistently been consumers. However the major concern of some consumers has not always coincided with some of the positions of the NMHA. Some of the more radical consumers calling themselves prisoners and victims of the mental health system and strongly denouncing and rejecting every kind of psychiatric treatment, formed small independent groups starting about 20 years ago. With the growth of community based mental health services more and more consumers were in a position to meet and organize another kind of organization more amenable to the appropriate and limited use of some psychotropic drugs and other modalities of treatment. In many instances consumer groups grew among the residents of half-way houses or support groups which were connected to Mental Health Associations.
Another impetus for more consumer activity came about with the organization of the National Alliance for the Mentally Ill (NAMI) about 12 years ago. This group which began primarily as support groups for the families of persons diagnosed as mentally ill has become a strong voice for improved treatment and biological research. Some consumers are included in this group but again the agendas were often divergent and the direct consumers formed groups independent of NAMI.
In the early 80's there was sufficient momentum to bring together direct consumer groups which were organized all across the country Very quickly the leadership skills among this group of direct consumers were put to good use in writing bylaws, developing goals and mission statements, forming a structure for affiliation and membership. Within one year of that first nationwide meeting the National Mental Health Consumers Association (NMHCA) was incorporated and has since held annual meetings. Today they are one of the strongest advocate organizations in the country.
Equally important with the successful lobbying efforts of the group is the advance that has been achieved in gaining meaningful and full participation in the decision-making process in many places and at many levels. The success in establishing and operating profitable small businesses is growing every month. Job placement of members in competitive employment has also increased due to the assistance in skill development as well as instruction regarding applications for work. Perhaps the initiative in training members to become mental health providers will bring more significant changes in direct service to others who are users of the service than any other of the services of the NMHCA.
Many of the strong proactive consumer groups of today started as self-help groups of former hospitalized mental patients. Not only did these contribute to the formation of the NMHCA but these groups helped set the pace and the style of most other self-help groups which have been called an American invention. Now there are hundreds of thousands of self-help groups. One writer in The New Yorker in 1990 writes "The self-help mode is entirely practical. It spawns not philosophies but practices, not theories but ways of living. Its strength is its foundation in the realities of people's lives".
The consumer movement in New Zealand has had the benefit of leadership by a very articulate consumer, Mary O'Hagan. She has also been instrumental in beginning the foundation for a worldwide consumers' organization, which has the encouragement of the World Federation for Mental Health. She wrote in Mental Health News, spring 1990:
"Mental illness workers must recognize that consumers belong to a slightly different culture to them. It's a culture that is more experiential than technical, less formal and hierarchical, founded on pain rather than success. It's a culture of people whose self-image has been shot to pieces, either by others who don't want to know us or those who try to help us but don't know how."
Cicero said "Freedom is participation in power." It is not unreasonable to believe that the participation in power that was written into the American constitution and the freedoms that were protected in the Bill of Rights laid the framework for the growth of a vital Voluntary Sector, vocal advocacy groups and valid volunteer consumer voices. The strength and the influence of these elements of American society add up to empowerment. This empowerment is much more than just a license or permit to act, indeed it is an imperative, a challenge to act. There is a real sense of relevance in being where the action is and this motivates hundreds of millions of ordinary citizens into assuming the role of a responsible citizen advocate.
The two most successful and most inspiring consumer advocates in a 200-year history are alive, "working, writing and challenging the system", today. They have encouraged millions to believe that consumer empowerment can really happen. Nader (1986) (3) (reminds us that, "A small number of citizens throughout our country's history have kept the flame of citizenship burning brightly to the benefit of millions of their less engaged neighbours, These true patriots have known that democracy comes hard and goes easy."
And again, Gardner (1980) reminded us at the time of the bicentennial in 1976, " Nations decay, only the citizens, critical and loving, can bring them back to life".
7. Future Perspectives
Although it is important not to exaggerate the worth of voluntary effort and the giving that supports it, it is also important not to underestimate how much this participation means to our opportunities to be unique and free as individuals and as a society. Through our voluntary initiative and independent institutions even more Americans worship freely, study quietly, are cared for compassionately, experiment creatively, serve effectively, advocate aggressively and contribute generously.
There is an encouraging and optimistic outlook about the vigour and activity of most segments of the Voluntary Sector. The peace movement that helped end the war in Vietnam is revived and growing as a strong voice against nuclear war throughout the world; environmentalists organizations are quite vocal regarding cleaning up toxic waste, acid rain, asbestos insulation and keeping the water, air, earth and factory livable. Most encouraging of all is the response of the population to the new direction that many health and safety agencies have taken - putting out a message of prevention and wellness promotion. Hard liquor sales are down; seat belt laws are increasing and auto fatalities are down; the diet and nutrition patters of millions have been altered due to the consistent message of heart, lung, cancer, stroke, diabetes and other health agencies. Led by the Children's Defense Fund, one of the most effective lobbying groups in the country, there has been a halt and some restoration of the funding for many programmes for poor children; the elderly are a powerful force regarding desirable and necessary health and social services; minorities have seen some progress in the hiring of blacks, hispanic and Asians on police forces, in school systems and in the marketplace. However, the minorities and the women's movement have many more battles and skirmishes before real equality is won.
Perhaps the most intractable problem in which the Voluntary Sector and the government both have enormous jobs is in combatting and treating the abuse of hard drugs including alcohol. There is growing concern and action - almost entirely in the Voluntary Sector - to prevent teenage pregnancies. We are slowly becoming aware that most of the health, mental health and mental retardation problems could be prevented if there were no premature and low birth weight babies. In the mental health arena there is grave concern that a move toward re-institutionalization is being discussed in some areas. This has been exacerbated by a growing number of homeless persons in many urban centres. However, that part of the community service systems that has been appropriately funded has proved its value and there is confidence that continuing pressure to allocate funds to build reliable and workable community support systems for mentally disabled persons will prevail.
1. Gardner J. Toward a Pluralistic but Coherent Society. University Press of America. Lanham, MD, 1980.
2. Beers C. A Mind that Found Itself. University of Pittsburgh Press, Pittsburgh, 1981.
3. Nader R. The big boys: styles of corporate power. Pantheon, New York, 1986.