Destinations and detours of the users' movement

One of the most important, if unexpected, influences on psychiatric practice over the last decade has been the growing involvement of what have variously been called mental health consumers, survivors, ex-patients, or users. While different labels are used in different contexts by different people, all of these terms refer to a person who has had a history of serious mental illness and is involved in advocating on his or her own behalf and possibly also on the behalf of others. The important contributions made by what we will call, for the purposes of this paper, the “users' movement” deserve our admiration and gratitude. By telling their personal stories of recovery and sharing what they have learned from their experiences in the mental health system, and living with and managing psychiatric symptoms, users have played a unique role in promoting the understanding and treatment of mental illness. They have provided hope to their peers, reduced the social stigma surrounding mental illness, improved the quality of mental health services by challenging the status quo of roles, rights, and options, and by emphasizing the centrality of the person who has an illness but no longer is an illness, have made it possible for recovery to become the goal of mental health services (Davidson et al., 1997). Though representing a relatively recent development in the history of psychiatry, the success and influence of the users' movement makes it hard now to imagine undertaking policy development, service delivery, or evaluation activities without the ongoing involvement of users. At the same time, the users' movement raises several dilemmas and challenges for the field. The process by which users gradually have become more involved in treatment and policy has not often been a smooth one (Salzer, in press). The involvement of users in treatment and research has not always been welcomed (Lee, 1995; Salzer, Rappaport, & Segre, 2001). Some professionals, on the other hand, have often felt confused, puzzled, and at times even attacked about their ability to understand and work with the user movement. After a couple of decades worth of experimentation and implementation, it seems like a good point at which to reflect on issues that have been settled into presumed truths or that remain unsolved. We frame the following questions in an attempt to promote the kind of open, frank, and substantive dialogue that we think will be required to keep this from happening.

(1) Have we found the best way to take advantage of the unique offerings of both experiential and evidence base knowledge?

Much of current psychiatric practice has been based on what professionals think they have learned and think they know about the nature of mental illness and the needs of people affected by it. Beyond viewing a patient's self-report as confirming or disconfirming diagnostic impressions or medication response, some professionals have largely disregarded the experiences of people living with mental illness in favor of presumably scientific or medical knowledge. This standard operating procedure has been called into question by the users' movement, which argues that knowledge to be gained about mental illness and, even more importantly, about recovery, needs to be grounded in and derived from their own personal values, preferences, and goals (Deegan, 1993). As a result, experiential knowledge has been proposed as an alternative to empirical knowledge, and heated debates have been waged between advocates of evidence-based practice and those of recovery-oriented practice (Anthony, Rogers, & Farkas, 2003). As a counter balance to the profession's emphasis on evidence-based treatments one can find for example at a peer-run program operated out of META Services in Phoenix, Arizona t-shirts that celebrate recovery with the bold assertion “I'm The Evidence”.

The dilemma that emerges at the interface of these opposing views is that they each discredit the other, depriving their adherents of what they might learn from each other. This is evident both in some mental health professionals who dismiss users' own experiences as idiosyncratic or irrelevant to treatment and in some users who claim that non-user professionals cannot possibly understand or be of assistance to them because they have not gone through what the users have experienced. Estroff (2004) has claimed that much mutual unintelligibility can be accounted for by a paradigm held by both groups which can be summarized as “You don't get it. You can't get it” (p. 286). Even if either of these claims have some truth to them, they only serve to curtail any possible dialogue between the two perspectives, leaving little room for mutual exploration or understanding.

As a possibility more constructive alternative, we suggest the acceptance of different kinds of evidence along with the adoption of different perspectives on mental illness and recovery (Roe & Kravetz, 2003). The professional who has never had first-person experience of mental illness or of occupying the role of “mental patient” undoubtedly has a lot to learn from listening to users' personal accounts. If in no other way, these stories offer valuable information about what it is like to live, and cope, with mental illness, much as health care professionals need to learn from the experiences of people with diabetes or cardiac disease. On the other hand, professionals have accrued a body of knowledge through training, research, and prior work with other people with mental illness which it would be counter-productive to ignore. We suggest viewing experiential and empirical knowledge as complementary rather than as competing; each can be enriched by the other and both are needed to inform effective and responsive practice. This will only be possible through a respectful and open dialogue in which each party recognizes the validity and value of the other's perspective and the kind of evidence he or she is drawing on in coming to understand mental illness and recovery.

(2) Rethinking the role of the “consumer representative”

As may be typical to political movements, many bystanders have assumed that the users' movement represents a fairly univocal position, with much rhetoric appearing to suggest that there is only one users' perspective on any given issue and that all users are in agreement about the fundamental things they have learned from their experiences. As just one example, a core principle of recovery is that it is a unique journey for each individual. About this principle, however, all users are assumed to agree. The same assumption underlies the role of users on agency boards, in completing satisfaction surveys, or in participatory research. One or a few users can be invoked to represent the perspective of hundreds or thousands of people whose only commonality is the fact that they all have used mental health services. But just as no one is only a mental patient, no one is only a user of mental health care. The monolithic categories of user and provider are just as artificial as the categories of pro- fessional, patient, person of color, Jew, or Arab, and are similarly limited in their utility. This point has been driven home especially by those people who wear both of these presumably mutually exclusive hats simultaneously, being a peer provider or a consumer professional.

Like any one-dimensional category, there are a broad range of people who will share the one common characteristic of being a user or provider of mental health care. Also, a person's affinity for one category may have little, if any, influence over his or her affinity for other categories. No two users will necessarily be any more alike than any two people with schizophrenia or any two clinical psychologists. This is not to say that there is no value to exploring and utilizing user perspectives in psychiatry; it is simply to suggest that there are a multitude of perspectives in this arena as in many others, and that any one individual purporting to represent all members of any particular category should be viewed with suspicion. The example of recovery again provides a useful illustration of this issue.

Many users have been courageous in sharing their personal stories of recovery and by doing so have helped to reduce stigma, instill hope, and impart some understanding of what it is like to experience and cope with a mental illness. Many people also have demonstrated an admirable capacity to reach major life goals despite the difficulties generated by their illness, serving as an important source of inspiration and role modeling for others. At the same time, some advocates have used their own personal experience as the basis for determining how one is supposed to act as a user or what one needs to do in order to be considered to be “in recovery”. In doing so, expectations and goals may be identified that not only may be extremely difficult for some to reach but also may be irrelevant to their own experiences and values. In our experience, for instance, most people who recover from mental illness express little to no interest in serving as public spokespeople for others with mental illness, not to mention becoming providers themselves. Most people simply wish to return to their personal lives, cherishing their recovery through the acts of walking their dog, embracing their children, or joining friends for a movie and pizza. It is similar with the related issue of disclosure. While advocates rightly argue that it will require the self-disclosure of many people experiencing mental illness who also function in valued social roles to reduce and eventually extinguish stigma, the choices of whether or not to disclose one's history of mental illness, what to disclose, to whom, when, and under what circumstances are highly personal choices that no one person can make for another. Our personal view is that at this point of time the single most important contribution is to promote the civil rights and responsibilities of inclusion in community life among people with mental illness. The user movement has and continues to play a key role in this process. A core element of these rights thus needs to be the right to speak for and to represent oneself; in other words, the right to be free from having others claim to speak on your behalf against your own wishes. In this spirit, both users and professionals can join together in pursuit of the shared goal of affording each person the right to self-determination that is a cornerstone of our democratic societies. What the person then chooses to do with that right lies outside of the scope both of the clinical and of the users' perspectives.

(3) What constitutes adequate input from users?

As we mentioned in our introduction to this paper, it is now hard to imagine undertaking policy development, service delivery, or evaluation activities without the involvement of users. In the US, for example, the legal mandate to do so has been established since 1990, when a federal law was passed requiring all mental health planning bodies to include representation from users and family members. The question remains, however, as to what constitutes adequate input or representation. Some advocates have suggested a numerical resolution, suggesting that over half of the seats on a board, council, planning body, or other work group be occupied by users. This kind of “52% solution” leaves a lot to be desired, however, as sheer numbers can be inconsequential if all of the users selected for a board or committee are selected based on their shared views or values. One outspoken and principled advocate can often be more effective in influencing the direction of a discussion than a handful of token users. On the other hand, if one wants to avoid the problematic situation described above in which one person represents a univocal user position, then one is well-advised not to be limited to having a single user representative in such a group.

But the real question here is how to ensure that user involvement or input is not relegated to token status; i.e., a user is not merely invited for the sake of providers being able to document that he or she have been invited and in which it is accorded no legitimate weight (Connor, 1999). This question has faced, and still faces, other similar civil rights movements, of course. The current debate in the US about the effectiveness and future of affirmative action strategies in addressing racism attests to the fact that this also has been a very difficult question to answer. We do not expect the answers to be any easier to find in the case of users of mental health services than they have been in cases of race, ethnicity, gender, sexual orientation, or religious affiliation (a difference which continues to drive violent conflicts around the globe). In the case of mental illness, though, we might be able to take a significant first step forward by appreciating the fact that the users' movement does represent first – before it is translated into any concrete policies or strategies for reforming care delivery – a civil rights movement aimed at restoring the basic human rights and citizenship of people living with mental illness. In this vein, we also will need to acknowledge that all users of mental health services will be the only ones to determine when their input or involvement has been adequately considered, integrated, or addressed.

Conclusion

In this editorial we try to point out a number of complex issues which, if left unaddressed, might detract from the important contributions that have been, and will continue to be, made by users of mental health care. As a fundamental principle for our efforts, we embrace Harry Stack Sullivan's insight into the overwhelming sense of commonality that outstrips any markers of difference between those of us with and those of us without a mental illness. As he remarked “everyone and anyone is much more simply human than otherwise, more like everyone else than different …” (cited in Brody, 1995). Users are right to argue, in this spirit, that the complexities we have identified are in no way specific to mental illness, but have characterized a variety of civil rights movements. Our hope in doing so has not been to challenge the legitimacy of the users' movement or to take away from the value to be derived from its success. To the contrary, we have raised these issues out of concern that our field will miss a wonderful opportunity by allowing the emerging recovery paradigm to come and go without bringing about any significant changes in our fundamental view of mental illness and the people affected by it. It has been a fundamental conviction of the users' movement that people with mental illness are first and foremost fellow citizens, with all of the associated rights and responsibilities. It will remain a fundamental contribution of this movement as well, however, only to the degree that people with mental illness are afforded the opportunities, supports, and sufficient power to make their own decisions.

Acknowledgement

The authors wish to thank Barbara Felton, Elliot Lazerwitz and Peggy Swarbrick for their insightful and helpful comments on an earlier draft.