EDITORIAL

Destinations and detours of the users’ movement

DAVID ROE1 & LARRY DAVIDSON2

1Institute for Health, Health Care Policy, and Aging Research, Rutgers University, USA and 2Yale

Program for Recovery and Community Health, New Haven, USA

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.

Correspondence: David Roe, PhD, Institute for Health, Health Care Policy, and Aging Research, Rutgers University,

30 College Ave. New Brunswich, NJ, USA 08901-1293. Tel: +1 848-248-0620. Fax: +1 732-932-6872.

E-mail: Droe@ihhcpar.rutgers.edu

Journal of Mental Health,

October 2005; 14(5): 429 – 433

ISSN 0963-8237 print/ISSN 1360-0567 online � Shadowfax Publishing and Taylor & Francis

DOI: 10.1080/08893670500270734

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(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

430 D. Roe & L. Davidson

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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.

Users’ movement 431

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(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

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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.

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