Sweet Words that Hurt

The Make-Believe World of User Participation, Rights and Voice
Michael McCubbin, Ph.D.

McCubbin, M. (2000). Sweet words that hurt: The make-believe world of user participation, rights and voice. The Rights Tenet (quarterly newsletter of the National Association for Rights Protection and Advocacy), Spring/Summer 2000, pp. 5, 8.

Posted with permission of the editor of The Rights Tenet, Dr. Ronald Bassman.

Many persons exercising or seeking coercive power in the name of mental health care justify their actions by the supposed "lack of self-insight caused by mental illness". This is a circular argument because lack of self-insight is often the psychiatrist's explanation for treatment refusal, and then used to support the diagnosis of mental illness and the proposed treatment. Inability of health professionals to recognize this false logic and the catch-22 this puts people in displays quite a bit of lack of self-insight!

In fact, lack of self-insight in mental health practices is so widespread, so entrenched, that it is reasonable to conclude that the whole system lacks self-insight. What do I mean by the mental health system? I mean much more than health and social service programs, the workers in those programs, and the patients and clients. The mental health system also includes:

* family members of patients and clients - who have powerful lobby groups seeking policy and laws in the opposite direction from what user groups themselves are seeking;

* professional associations - who try to enhance their professions' prestige and power by enlarging their roles in directing mental health care and treatment programs and policies and by increasing medicalization of their practice (today social workers use DSM and psychologists are seeking prescription privileges);

* pharmaceutical companies - who finance many of the professional and family lobby groups and provide direct and indirect incentives (trips, conferences, advertising in medical journals, continuing education, mental illness screening campaigns, research funding) for psychiatrists and other physicians to prescribe their psychotropic drugs;

* general public - who have difficulty imagining that they themselves could at some point end up being a "mental patient", and who have no sources of information about psychological distress, and what to do about it, other than the line of the family and professional lobby groups that "mental illness" is a brain disease that has to be treated, perhaps forcibly, with drugs or ECT, and that without such treatment the person could be "dangerous";

* scientists, like myself - who are increasingly finding that they will not get money for research, or access to data, if they challenge that line; with the result that scientific "knowledge" is at worst very biased and at best increasingly geared to the questions that professionals, family lobby groups, and pharmaceutical companies want to ask, rather than toward what service users want to ask;

* and finally, and definitely last in terms of influence, the mental health service users themselves - whose fledgling cooperatives, mutual support groups, and self-advocacy groups are run with little or no money and are simply not heard by all the other actors mentioned above.

Once we think about the mental health "system" as a social, cultural, political and economic system - which is driven not only by love, caring, compassion, scientific evidence, and good intentions, but also money, power, prestige and other less lofty human motivations - then we can think more clearly and realistically about the apparently enlightened and humanistic discourse that those with power within the system have increasingly been using.

Increasingly we hear that programs, practices, policies and laws aim to be "participatory", in "partnership" with users, "empowering", "community-based", "psychosocial", and respectful of human rights. However, we are far from achieving these objectives. Indeed, it appears that these concepts have often been distorted into meaninglessness or even into their opposites:

Empty rights. Not only have the rights of users - to autonomy, to dignity, to refuse treatment, to informed consent - been systematically constrained by civil commitment laws, by forced outpatient treatment laws, and by the legal privileges and protections of the professions, but even those remaining legal rights on paper are insufficiently, or almost never, translated into meaningful practice. In some places people are not even informed when a court hears a request from a family member to commit that person for psychiatric examination, obviously making it difficult to contest! Difficulties accessing competent lawyers or other advocates, and the kind of counter-expertise that a court will listen to (particularly psychiatric) make contesting civil commitment futile for many patients.

Furthermore, no matter how tight the law is supposed to be regarding "danger" to self or others, in actual practice the decision to commit depends heavily upon risks to mental health and hence "need for treatment". Need for treatment is too often based on the fact that a diagnosed person declined the recommended treatment - which refusal suggesting to the psychiatrist "lack of self-insight" which adds to the "proof" of mental illness. Finally, it is anybody's guess how many forcibly treated persons have at least had an independent assessment of competence and independent and properly monitored proxy decision making processes that aim to decide what that person would if temporarily competent.

Coopted voices. The trend among mental health planners over the last decade has been to adopt the discourse of democracy and inclusiveness. But usually this discourse has remained symbolic, or worse: coopting users' voice - drawing them into "cooperation" with the system and muting their opposition to its disempowering features. Too often we have seen health authorities say that they have "community participation" on their governing bodies - leading many to assume that this includes user participation - when the "community" persons are actually government paid health and social service professionals. Or, if there is user representation it is token and the user representative is snowed under by professional power, arrogance, agendas and technocratic language.

At the larger level, the public and even health professionals, planners and researchers believe or pretend that family and psychiatry lobby groups are user groups or speak for users. For example, in Canada there was a national consultation meeting for the establishment of a mental health research institute; what was worse than the fact that there were no users present was the fact that the organizers announced that there were, even saying so in the consultation report. Incredibly, they confused user groups with the family and psychiatry lobby groups who were there! Whether intentional or not, such constantly repeated errors allow those persons actually privileged to make decisions to justify them by the supposed participation of users. What is worse than making someone else's decision is to do it while pretending that you are not.

The above examples are only a few of the many indications of empty user rights and coopted user voices that typical users experience on a daily basis. In the scientific literature there is much talk about empowering and rights-advancing programs and objectives but almost no serious attempt to discover whether the rights attributed to users are actually enjoyed, or whether the language of participation is more than pretence. Few academic researchers will instigate such research, because it isn't users who pay for it but governments and corporations. We need such research so that we can hold programs and professionals accountable. It isn't enough for laws, program descriptions, language and professional guidelines to talk rights and participation. We have to walk the walk.

To ever be able to do so we need people who are truly concerned about the rights, dignity and empowerment of users, whoever they are - members of the public who are activists on rights issues, users themselves, dissident practitioners and academics - to demand and get involved in research ensuring that the sweet words of participation and rights are not a replacement for action. Because, if they are, then the sweet words hurt - they camouflage what is really going on.

Michael McCubbin is a researcher with the Saskatchewan Population Health and Evaluation Research Unit, University of Regina. Email: michael.mccubbin@uregina.ca For further reading see his articles co-authored with David Cohen:
* Extremely Unbalanced: Interest Divergence and Power Disparities Between Clients and Psychiatry, International Journal of Law and Psychiatry, 1996, pgs. 1-25.
* A Systemic and Value-Based Approach to Strategic Reform of the Mental Health System, Health Care Analysis, 1999, pgs. 57-77.
* Should Institutions that Commit Patients also be Gatekeepers to Information about Civil Commitment? Implications for Research and Policy, Radical Psychology, 1999, http://www.yorku.ca/danaa/mccubbin.htm (also with Bernadette Dallaire and Paul Morin).