Social Policy & Administration issn 0144±5596

Vol. 33, No. 1, March 1999, pp. 73±90

Users as Citizens: Collective Action and the Local

Governance of Welfare

Marian Barnes

Abstract
Self-organization amongst users of community care services preceded the consumerist developments
of the 1980s and early 1990s, but can be considered to have been ``legitimized'' by top-down
objectives relating to ``user involvement''. Nevertheless, the objectives and value bases of disabled
people's organizations and organizations of users (or survivors) of mental health services have not
always been consistent with those of consumerism, and user groups have experienced tensions in
determining the extent to which they should respond to of®cial agendas. Drawing on theories of new
social movements and of citizenship, this paper considers the developing place of user organizations
within systems of local governance. It looks at the way in which groups have sought to assert the
legitimacy both of experiential knowledge and of their position as citizens in the face of of®cial
responses which have constructed them as self-interested pressure groups. It draws on empirical
research investigating local groups of disabled people and of mental health service users conducted in
the ®rst part of the 1990s. It discusses the signi®cance of shared identity as a basis for collective
action alongside more pragmatic motivations to in¯uence the nature of health and social care services.
In the context of appeals to ``community'' and ``partnership'' which are starting to replace the
discourse of markets and contracts as the key metaphor for both policy-making and service delivery,
the article considers likely future roles for groups comprising people often excluded from community.

Keywords
User movements; Governance; Citizenship; Community; Disabled people; Mental health
service users

Introduction
This paper considers the signi®cance of self-organization amongst users of
mental health services and amongst disabled people in the context of
renewed interest in notions of community and citizenship in public policy-
making.1

Address for correspondence: Dr Marian Barnes, Department of Social Policy and Social Work,
University of Birmingham, Edgbaston, Birmingham, B15 2TT.

# Blackwell Publishers Ltd. 1999, 108 Cowley Road, Oxford, OX4 1JF, UK and
350 Main Street, Malden, MA 02148, USA.
 As the twentieth century draws to a close the welfare states of most western
countries are facing fundamental challenges. In the UK questions are being
raised about the services individuals can expect to receive as social rights of
citizenship (Plant 1992). Welfare reform is one of the major items on the
agenda of the Labour government elected in the UK in 1997 and has
provided an early indication of the con¯icts engendered by attempts to
change the balance between public and private responsibilities for welfare.
Whilst the experiment in welfare markets, particularly within the National
Health Service, is being gradually abandoned, this is unlikely to lead to a
reversal of the view that responsibilities for service provision do not lie solely
in the public sector (Ham 1996). ``Partnership''Ðbetween different parts of
the public sector and between public, private and community sectorsÐis
being urged as the way forward (EL 97 (65); NHSE 1997).
Concern about a democratic de®cit in the governance of public services,
and about the low level of people's participation within democratic processes
is also contributing to a re-analysis of the relationship between individuals
and the state (Burton and Duncan 1996). Within all parts of the public sector
there is a search for renewed legitimacy through the opening up of decision-
making processes to more direct public involvement (e.g. Barnes 1997a;
Coote and Lenaghan 1997; Harrison et al. 1997; Stewart 1997). The 1980s saw
the ``empowered consumer'' come to pre-eminence as a means of increasing
the responsiveness of public services. The later part of the 1990s is seeing a
rediscovery of ``the community'' as both a resource and a focus for
empowerment within contexts such as action to reduce health inequalities
(e.g. Douglas 1996; Smithies and Adams 1993), initiatives to develop safer
communities (Bright 1997) and urban and rural regeneration (Department of
the Environment 1995).
Within this context it is particularly pertinent to consider the experiences
of those who not only have limited power to exert in¯uence as consumers in
welfare markets, but who have also often been excluded from ``community''.
Such exclusions have resulted both from social policies which have been
deliberately designed to separate those regarded as deviant or different, and
by public attitudes which have reinforced such policies (e.g. Barham 1992;
Oliver 1996; Prior 1993).

Consumerism and User Involvement in Community Care

The 1990 NHS and Community Care Act sought to achieve a shift in favour
of consumer rather than producer interests in social care services. This was to
be achieved through encouraging user and carer involvement in the process
of assessment by which services are accessed; requiring social services
authorities to consult with users, carers and voluntary organizations during
the production of community care plans; the introduction of a complaints
procedure containing an element of independent review; and the establish-
ment of inspection units, organizationally at ``arms length'' from service-
providers, with input from lay membersÐwho could be, but are not
necessarily, users of services.
By the early 1990s user involvement had developed from something

74 # Blackwell Publishers Ltd. 1999

encouraged by the more innovative social services authorities (e.g. Barnes
and Wistow 1994a) to a statutory requirement. But if there was now top-
down encouragement to listen to what service users were saying, there was
also a growing movement amongst those who were dissatis®ed not only with
the nature of the services they were receiving, but also with their lack of
control over them. Not all those involved in user movements were convinced
that user involvement as practised by statutory agencies was consistent with
their objectives.

User Groups and Social Movements

The British Council of Organizations of Disabled People (BCODP) was
formed in 1981, in response to dissatisfactions with statutory services, and
with able-bodied control of voluntary organizations. In the same year
Disabled People's International held its ®rst congress in Singapore (Camp-
bell and Oliver 1996). ``People First'', an organization promoting self-
advocacy on the part of people with learning dif®culties, was established in
this country in 1984, encouraged by self-advocacy developments in the USA
(Williams and Shoultz 1982). The mid-1980s also saw the ®rst UK mental
health patients' councils following contact with Dutch users who provided
the inspiration for action to support independent organization (Gell 1987).
The consumerist changes being introduced ``top-down'' provided some
legitimation for autonomous action on the part of these developing user
groups. But locally, nationally, and internationally user groups have been
articulating their own objectives which are not always consistent with those
of of®cials promoting user involvement (Barnes 1997b). Together such groups
constitute part of a growing ``user movement'' with links throughout Europe
(van der Male 1995) and in the USA.
User groups are variously described by their members and by those they
seek to in¯uence. They may be called self-help groups, pressure groups,
advocacy groups or consumer groups. Some analysts have suggested such
self-organization can be understood by reference to theories of new social
movements (e.g. Oliver 1990; Rogers and Pilgrim 1991; Shakespeare 1993).
In our research into disabled people's organizations and groups of mental
health service users (Barnes et al. 1996) we found this a helpful framework to
distinguish user self-organization from interest groups (Phillips 1993). We
also found it useful to draw on new theories of citizenship, particularly those
which emphasize the practice of citizenship (Prior et al. 1995) and the need for
theories of citizenship to incorporate private as well as public roles (Siim
1994). Users of welfare services may be excluded from citizenshipÐboth
formally in terms of actual constraints on their citizenship rights (Law
Commission 1995), or through social organization which makes it impossible
for people to realize the substantive rights of citizenship (Plant 1992; van
Steenbergen 1994).
New social movements seeking change within public policy face a number
of tensions in their choice of strategies. Jenson and Froestad (1988) explored
this in their study of client organizations in Norway. One danger is that of co-
option which may be especially great in the case of organizations amongst

# Blackwell Publishers Ltd. 1999 75

those who are least powerful: ``In addition to the general problems tied to
poverty of resources the clients suffer from lack of self-con®dence which is
often a result of a long-lasting career as a client. An organization of the
powerless will also be more susceptible to in¯uence. This creates dangers for
the growing of oligarchy and different kinds of co-optation from professions,
political organizations, bureaucracies and companies'' (1988: 87).
Movement from oppositional action to action to develop new forms of
institutions also demands different types of organization and thus change in
the nature of the movements themselves. Lovenduski and Randall (1993)
consider this in the context of the development of feminist political action.
They discuss how those involved in the women's refuge movement faced
dilemmas of both principle and organization when statutory authorities
started to incorporate approaches originally developed in opposition to
existing practices adopted by local authorities, the police and other agencies
concerned with domestic violence. Similarly, those involved in the establish-
ment of Women's Therapy Centres have been faced with compromise in
order to gain acceptance for their ideas by statutory agencies (Barnes and
Maple 1992: 151±4), and to adopt different organizational strategies when
seeking to provide services directly (Sturdy 1987). Similar dilemmas are faced
by autonomously organized groups of users once they seek to impact on
mainstream welfare services, or seek funding from the statutory sector.
Drawing on theories of new social movements and new theories of
citizenship, two issues emerge as central to an understanding of the nature
and signi®cance of self-organization amongst groups based in experiences of
exclusion, oppression or disadvantage which seek to impact on service
systems:

1. the signi®cance of identity as a factor de®ning both motivation to act

collectivelyÐto develop groups in which identities can be formed and
expressed, and the objectives pursued by such groups; and
2. changes within local governance which have provided space in which
user groups can act, but which have prioritized the identity of service
users as consumers rather than citizens.

This paper examines the objectives and strategies of disabled people's groups
and mental health service user groups in relation to both issues. Both operate
in a context in which community care policy provides a focus for much of
their effort to in¯uence both services and policies. There is uncertainty
amongst the mental health users' or survivors' movement about identifying
themselves with the disabled people's movement in the UK and it is possible
to highlight differences in the priorities and tactics adopted by different
groups. For example, disabled people have sought to celebrate the value of
diversity and have rejected attempts to make them ``approximate to normal-
ity'' (Davis 1995; Oliver 1996). In contrast, people who have experienced
mental illness have sought to emphasize that mental distress is a part of
normal human experience (Barnes and Shardlow 1996a; Chamberlin 1988).
``Becoming ordinary'' is a useful tactic to adopt by people who have been
labelled mentally ill as a result of apparently deviant behaviour (Lorencz

76 # Blackwell Publishers Ltd. 1999

1991). ``Coming out'' as a user of mental health services has been important
for service users who have gained a presence in forums from which they have
hitherto been excluded. Some have identi®ed themselves as ``survivors'' of
oppressive services. However, it is both a shared experience of using services
and of the broader impact of mental distress or disability on their lives which
motivates many to participate in both movements and it is the commonality
of experiences with which I am concerned here.

Negotiating Identities
Renewed interest in the concept of community within academic discourse
re¯ects not only the communitarian thinking popularized by Etzioni (1995),
but also the emergence of analyses which re¯ect on the different identities
from which community membership can derive. As well as referring to a
locality within which people interact in their daily lives, community can refer
to shared identities as members of a particular religious or ethnic group, a
shared sexuality, or a shared identity as disabled people. Such communities
of identity may consist of people who do not live within the same locality and
who may not interact frequently on a face-to-face basis.
Literature produced by disabled people re¯ects both the cultural and
political signi®cance of identity for disabled people's organizations. Camp-
bell and Oliver (1996) re¯ect on diversity within the disability movement, but
also the centrality of the social model of disability and of the necessity of
disabled people de®ning themselves rather than submitting to a de®nition
imposed by welfare professionals. At a political level that may involve direct
action, such as the action taken early in 1998 by activists who threw red paint
at the entrance to Downing Street in opposition to suggestions that bene®ts to
disabled people might be withdrawn. Others express it through disabled arts
(Morris and Finkelstein 1993) or through the development of a sociology of
disablement which provides a theoretical basis for an analysis of disabled
people's experiences (Oliver 1990). Deaf people in particular have empha-
sized a deaf culture as a distinct cultural identity (Davis 1995; Rose and Kiger
1995).
Campbell and Oliver (1996) accept the de®nition of the disabled people's
movement as a new social movement and point to the link between the
development of a disability consciousness and action within the movement:

We . . . consider how this process has required the rede®nition of self

and a recognition that the personal is the political. Finally we consider
the challenges to negative disability imagery that this personal liberation
has produced, and the attempts to develop a positive imagery through
the newly emerging disability culture. Central to this will be the role of
the social model and the recognition of disability as oppression. It is also
worth making the point here that, for us, transforming both personal
and political consciousness is one of the key factors that separates new
social movements from the old, more traditional social movements.
(1996: 105)

# Blackwell Publishers Ltd. 1999 77

Melucci (1985) has suggested that a shared identity ``constructed and
negotiated through a repeated process of `activation' of social relationships
connecting the actors'' distinguishes ``new'' from ``old'' social movements.
The emphasis is on agency, rather than class location, and as Melucci
suggests, identities are created and re-created not simply by ``being'', but
through action within such movements. Scott (1990) has suggested a very
diffuse view of the identities which might form the bases for social move-
ments: ``the possible number of social movements is limited only by the
potential range of collective identities people are willing to adopt (for
example, as women, rate-payers, animal-lovers, inner city dwellers etc.)''.
This confuses the difference between identity and interest. Whilst having a
physical impairment is not the same as accepting an identity as a disabled
person or choosing to act within the disabled people's movement, the element
of choice in adopting or accepting an identity is surely different in the case of
disabled people from that of animal-lovers.
In contrast to Scott's view, Phillips (1993) emphasizes the distinction
between identity-based social movements and interest groups. In her essay
``Pluralism, solidarity and change'' she writes:

The new pluralism homes in on identity rather than interest groups: not
those gathered together around some temporary unifying concernÐto
defend their neighbourhood against a major road development, to lobby
their representatives against some proposed new lawÐbut those linked
by a common culture, a common experience, a common language.
These links are often intensely felt, and, more important still, are often
felt as opposition and exclusion. Identity groups frequently secure their
identity precisely around their opposition to some ``other'', focusing on a
past experience of being excluded, and sometimes formulating a present
determination to exclude. (1993: 146±7)

Underpinning this distinction is the fact that action around a particular

``interest'' can be engaged in by anyone, regardless of their personal or social
identity. However, white people cannot join some black people's organiza-
tions, nor, in many cases, can men participate in action undertaken within
the women's movements. The extent to which membership of groups is
exclusive to those sharing the characteristics which de®ne the relevant
identity varies within movements. It is one example of the diversity which
exists within new social movements. Nevertheless, for groups for whom
oppression, difference and exclusion provide a focus for action, the issue of
identity based on a common experience is a key motivating factor. Some may
accept others as allies, as associates or as supporters, but not allow them to
participate in decision-making. Control rather than membership is what
makes the difference. Hasler (1993) wrote of the early years of the disability
movement: ``What characterized all these groups was that their leadership
was made up of disabled people, and they believed that disabled people
should and could develop solutions to the problems they encountered.''
Whilst some of the groups we studied (Barnes et al. 1996) welcome non-
disabled people or people who have not used services as members or allies,

78 # Blackwell Publishers Ltd. 1999

they are not given the same status, for example when it comes to voting on
issues of policy.

Legitimate Pressure?
The confusion between identity and interest groups was evident in responses
of of®cials to the groups studied in our research (Barnes et al. 1996).
Organized groups of users were seen as self-interested and atypical and this
was used to question the legitimacy of the position they take. This is
illustrated in the following response from an of®cial to one of the mental
health groups in the study:

``I think that in collecting the views of users you have to throw your net more widely
than just the pressure groups. That you need, that into your audit systems the user
view and not the representative's view, that the actual person there who is using the
service at the time''. (our emphasis, quoted in Barnes et al. forthcoming)

The term ``pressure group'' used here to describe an organized group of

mental health service users is applied to distinguish the so-called legitimate
voices of unorganized users, from the allegedly ``unrepresentative'' voice of
those who collectively draw on their experiences to seek improvement in the
mental health system. The irony of this is that hitherto unorganized service
users or citizens who become participants in health service decision-making
can also be berated for expressing personal views and re¯ecting personal
experiences rather than taking the wider view and re¯ecting, for example, on
the needs of populations. Barnes and McIver (1998) have identi®ed such a
response in the context of public participation in primary care. Organizing
within user movements can create the conditions in which it is possible for
people to act as genuine ``representatives'' of communities of identity, but it
can also be used to undermine the legitimacy of such representations by
constructing them as expressions of self-interest in the context of pressure
group activity.
An activist in a disabled people's organization re¯ected on how he
interpreted the notion of ``pressure'' in the context of action taken by the
disabled people's coalition in which he was engaged:

``Pressure to me as it applies to organizations like ours is really resistance . . . It's

pressure to remove barriers so it's pressure applied to public opinion, barriers to public
awareness, perpetuated by the media and so on; it's pressure to overcome the barriers of
the administrative systems and information . . . pressure to overcome the physical
exclusions that have built up around disabled people . . . it's pressure to overcome
resistance and obstacle.'' (disabled activist)

This analysis distinguishes interest-group politics in which powerful lobbies

seek to in¯uence policy in order to reinforce their own already powerful
position, from action amongst groups excluded from power which aims to
enable them to reach the same starting point as everyone else. Such action

# Blackwell Publishers Ltd. 1999 79

requires collective organization and (as discussed below) the development of
con®dence and skills within groups and in individual members.

Objectives of Self-organization
Building community capacity to enable community participation is an
expressed objective of policy in increasingly diverse contexts. The participa-
tion of communities is seen both as a means and an end to promoting health,
reducing crime and rebuilding the social and economic infrastructure of
inner cities. In this context, a perception of user groups as simply one
amongst a number of self-interested stakeholders lobbying in a pluralistic
policy system may run counter to emerging policy trends.
A key aspect of the theorization of new social movements concerns the
objectives or purposes of such movements. Most analyses emphasize the
ideological nature of such goals, placing practical changes within the context
of a much wider purpose which presents a fundamental challenge to
dominant goal structures. For Melucci (1985) such goals are symbolic and
cultural, concerned with the meaning and orientation of social action and
providing a vision for future models of social interaction. Cohen (1985)
suggests: ``they target the social domain of `civil society' rather than the
economy or state, raising issues concerned with the democratization of
structures of everyday life and focusing on forms of communication and
collective identity'' (1985: 667).
User groups seek cultural and ideological objectives relating to the way in
which mental distress and disability are understoodÐboth within service
systems and in society as a whole. They also seek to democratize the
structures through which services are designed and delivered. Their targets
include both the state as commissioner and provider of welfare services, and
civil society from which, uncivilly, they have often been excluded.
Much of the action in which user groups are involved is directed towards
``the public'' rather than to welfare systems. For example, one mental health
group in our study had conducted a public awareness campaign using the
concept of ``stress'' to emphasize the ``normality'' of mental health problems.
Other action was directed at organizations or institutions outside the state,
for example the media.
But it is not really possible to separate out cultural objectives (such as the
media representation of disabled people) from objectives of securing change
within systems of welfare. One particular dimension of the cultural objectives
of user movements is that of epistemologyÐthe value of experiential know-
ledge as a way of understanding and explaining mental health problems and
disability, and for determining appropriate service models.
Self-organization provides space for re¯ection on shared and different
personal experiences. This may develop into theorization which produces
new explanatory models to provide a reference point both for self-develop-
ment and for campaigning (Morris 1989; Oliver 1996). Activists recognize
that the development of ``disability consciousness'' cannot be forced, but that
it is important to create a context in which people could make connections:

80 # Blackwell Publishers Ltd. 1999

 ``We want the Coalition to embody this collective experience of exclusion and we want
to be able to represent it at every level from the very simple local level where, for
example, someone realizes that very small changes in their local environment like the
ability to get in a corner shop can make a very signi®cant difference to their lives in that
they might not be dependent on people to do their shopping for them, they wouldn't
have to wait for their home helps to get basic everyday things that other people get when
they want them. And all the way from that experience, that awareness of daily
obstacles, to the developed political awareness of activists and all stages in between.''
(disabled activist)

Whether or not people develop a sophisticated political analysis of their

situation, the opportunity to share experiential knowledge provides access to
an expert resource which is different from that available from health and
social care professionals (and may be considered more useful than profes-
sional input). The value of information and experience sharing is commonly
identi®ed by those engaged in user groups of all types (see e.g. Barnes and
Bennet, 1998, in relation to older people's experiences of this). Beyond the
exchanges that take place between disabled people and others involved in
user groups, the establishment of dialogue between users and producers of
services provides forums in which experiential and professional knowledge
can be shared. Through dialogue comes at least the possibility of transforma-
tion and change, described by Iris Marion Young as follows:

By giving voice to formerly silenced or devalued needs and experiences,

group representation forces participants in discussion to take a re¯ective
distance on their assumptions and think beyond their own interests.
When confronted with interests, needs and opinions that derived from
very different social positions and experience, persons sometimes come
to understand the limitations of their own experience and perspective
for coming to a conclusion about the best policy for everyone. (quoted in
Phillips 1993: 156)

This notion of deliberative or communicative democracy is gaining increas-

ing attention within both academic political science and public policy circles,
and in practical projects to increase citizen participation in public decision-
making (see e.g. Gutmann and Thompson 1996; Phillips 1995; Stewart 1997).
But there are particular challenges associated with developing dialogue and
deliberation between those who may be de®ned as ``incompetent'' and who
have been excluded from decision-making about key issues affecting how
they are able to live their own lives, and those who may be gatekeepers to the
services they need.
Dialogue between users and of®cials can often be uncomfortable for
professionals unused to being questioned by their clients or patients:

``They are not used to being accountable to the member of an organization, they are
not used to being asked awkward questions and so it is a very dif®cult environment.''
(disabled activist)

# Blackwell Publishers Ltd. 1999 81

Professional defensiveness has been evident in many initiatives which have
sought to empower service users, in particular those involving users of mental
health services (Barnes and Wistow 1994b). Power imbalances also mean that
users who speak out put themselves at risk, and need the support of peers if
they are not to suffer as a result. Thus user self-organization is critical as a
foundation on which deliberation to increase understanding can be built.
Activists spoke of supporting people to take on limited roles within speci®c
services before building the con®dence to engage in more strategic decision-
making processes. Once people recognize that their own knowledge and
understanding of their situation might lead to alternative solutions to those
suggested by professionals, the groups provide both the opportunities and
support necessary to enable dialogue to develop. This is capacity-building
amongst communities of people whose identities have been devalued and
who, individually, have been largely powerless to achieve change.

Governance and Citizenship

Collective action based in common experiences of oppression, disadvantage
or social exclusion should be distinguished from an assertive consumerism
which seeks to maximize individual self-interest. But once user groups
engage in dialogue with producers of public services they enter the territory
of public service decision-making. It is at that point that the issues of identity
and governance come together in the tension around the disputed identities
of ``consumer'' or ``citizen''.
Collective action amongst service users provides a means through which
citizenship can be expressed in three ways:

1. seeking to achieve social rights associated with the status of citizenship

(Marshall 1950; Plant 1992);
2. providing a forum from which excluded individuals can contribute to the
practice of citizenship (Lister 1998; Prior et al. 1995);
3. enhancing the accountability of public services to their citizen users
(Ranson and Stewart 1994).

Elsewhere I and others have discussed ways in which individual user groups
seek to enhance the citizenship rights of those they represent (Barnes and
Shardlow 1996b; Barnes et al. forthcoming). The disability movement has
explicitly adopted a civil rights position in relation to campaigns for disabled
people's rights and has used the discourse of citizenship to argue for anti-
discrimination legislation (Barnes 1991). But here I want to focus on the
practice of citizenship and how user groups can play a role within systems of
governance. Ranson et al. (1995) describe the de®ning quality of citizenship as
agency: ``citizens are makers and creators as well as members of the worlds in
which they live.'' Lister also considers the relationship between agency and
citizenship in her work on feminist perspectives on citizenship:

To act as a citizen requires ®rst a sense of agency, the belief that one can
act; acting as a citizen, especially collectively, in turn fosters that sense of

82 # Blackwell Publishers Ltd. 1999

 agency. Thus, agency is not simply about the capacity to choose and act
but it is also about a conscious capacity which is important to an
individual's sense of self-identity. The development of a conscious
sense of agency, at both the personal and political level, is crucial to
women's breaking of the chains of victimhood and their emergence as
full and active citizens. (Lister 1998: 38)

A similar analysis can be applied to the role played by user groups.

Citizenship is not just about having certain rights (and concomitant
responsibilities), but about being able to participate in the community. The
concept of citizenship is not only a political, but also a sociological one (van
Steenbergen 1994). People with mental health problems and disabled people
experience discrimination which affects their capacity to engage as active
citizens within the lives of their communities. Groups organized around these
identities seek to achieve social justice and to enable people to participate as
citizens within their communitiesÐby taking part in determining the nature
of welfare services, by supporting users to take on other roles, and by action
intended to overcome stigmatizing and exclusionary practices amongst
members of the communities in which they live. The following quote from
a disabled woman interviewed during our research clearly expresses citizen-
ship aspirations which go beyond in¯uencing services related to personal
impairment:

``More [disabled] women are having relationships . . . getting married . . . having

children. So it is obvious to anybody that we need access to health care, we need access
to schools, disabled parents need to be able to go on to Boards of Governors and things
like that to have a say in their child's education . . . But we still can't get the message
over to everybody . . .'' (disabled activist)

Interviews with user group activists in our study also provided personal
testimony of ``breaking the chains of victimhood'':

``. . . it's given me a life and without it I wouldn't have dreamed of doing half the
things I do now. It's given me con®dence, assurance . . . I get up now and speak at a
conference quite happily. A few years ago I would have no more done that than ¯y!''
(mental health activist)

``I've seen disabled people who have been in a position of receiver and they've come into
the position to do something for the community, the change is just tremendous. Their
self-esteem comes back . . . really enjoy life. And it does them good.'' (disabled
activist)

Participation in the groups demonstrates that being disabled or experiencing

mental health problems does not also imply incompetence:

``One of the major roles that we can play is actually to say, we are users, we can
participate at this level, we can articulate, we can challenge, we can negotiate, we can

# Blackwell Publishers Ltd. 1999 83

 write papers, we can do this, instead of [being] some bumbling idiot that doesn't
know what they are doing.'' (mental health activist)

Participation quite literally gives people a ``voice''. As con®dence develops

they are able to play a role in organizing the group, in planning forums
involving service purchasers and providers, and in representing the group at
conferences and seminars. Some user groups have become involved in
training professionals, some in providing advice and advocacy services, some
provide user-led services and others jointly manage services with statutory
agencies. Group members may become active participants in strategic
decision-making about health and social care services at local and national
level (e.g. the Mental Health Task Force established by the Department of
Health to support the implementation of community care policies within
mental health services included a national user group), as well as in
supporting individuals to play a more active part in decision-making about
the services they receive directly.
Thus, as well as addressing discrimination directly (through public
awareness campaigns as well as by individual advocacy), the active involve-
ment of service users in public service decision-making systems demonstrates
their capability to be active agents ``making and creating'' the services they
receive, rather than simply ``consuming'' them.

Enhancing Accountability
At this point the objectives of user groups can be seen to come close to those
of public service of®cials who seek, through engagement with user organiza-
tions, to enhance the legitimacy of their decision-making processes and to
improve the responsiveness of the services produced. This can be considered
in terms of the role of user groups in contributing to a process of
accountability based in dialogue. A relationship of accountability implies
an important shift in the balance of power between users and providers.
Whilst none of the interviewees in the user group study claimed that the
in¯uence of these groups had resulted in a fundamental shift in the balance of
power within the health and social care system, they did believe that the
groups had provided a challenge and forced those in positions of power to
reconsider their practices (Barnes et al. 1999). Through their presence within
the different forums in which they meet with purchasers and providers, users
can require public of®cials to give account of their actions and to be
questioned on this. A member of one of the mental health user groups
which had a well-established relationship with the local health authority and
mental health trust described one way in which this can happen:

``I think it is very easy for professionals to write a really glowing document saying this
is what we are providing, but if the end result is that it is not what is really
happening, then they have to be made accountable for that particular statement and so
one of the roles I think we play is to actually challenge the quality assurance issues, for
instance, laid down in the contract between the mental health unit and the purchasing
group of the health authority. And if they don't meet that then we will actually raise it

84 # Blackwell Publishers Ltd. 1999

 both with the purchaser and say, you know, what are you going to do about this?''
(mental health activist)

Here the direct experience of mental health service users is being used to
question the extent to which service providers are meeting their contractual
obligations. They are seeking answers as users or potential users of those
services who may be directly affected by any failure to deliver what was
intended. But in so doing they are also acting in the public interest, providing
a means through which public service providers are required to give account.

Dilemmas and Tensions

Changes in systems of governance associated with new public management
provided opportunities for users to play a more active role in in¯uencing the
nature of health and social care services. However, those changes empha-
sized the creation of more effective consumers as a spur to increasing service
responsiveness, rather than community development as a basis for collective
empowerment. Most user groups seek to engage with the state in order to
achieve change in the nature of services, and ``user involvement'' has
achieved widespread acceptance as a task to be undertaken by public service
of®cials. However, whilst of®cials involved in health and social services might
increasingly look to user involvement as a source of legitimation for their
decisions, they also tend to place quali®cations on the legitimacy of user
groups as representatives of service users (Harrison et al. 1997). Apart from
questioning the organizational capacity and coherence of individual user
groups, becoming organized per se is seen to distinguish activists from the
majority of ``ordinary'' service users (see above, p. 79). The wider purposes
encompassed by user movements are rarely acknowledged by of®cials
concerned primarily or solely with the more effective functioning of one
particular service.
User self-organization is signi®cant in its own right as a means of
enhancing the citizenship of excluded groups, not simply as a means through
which producers can access users to provide consumer feedback. This creates
a number of dilemmas for user groups seeking to engage with the state in
order to achieve change in service systems, as well as other objectives. The
particular dilemmas which have been identi®ed by user activists can be
summed up as follows:

1. The potential for their energies to be dissipated by engaging with an

increasingly diverse set of bodies resulting from the fragmentation of
systems of governance. The purchaser/provider split created an increase
in the number of forums in which decisions might be made, and the
possibility (referred to as a reality by some of the of®cials interviewed in
our study), that purchasers and providers might seek to ``play the user
card'' in competition with each other (Mort et al. 1996). As ``user
involvement'' becomes more widespread and more public agencies start
to realize the necessity of consulting with or more directly involving those
who use their services, this danger increases. User groups not only speak

# Blackwell Publishers Ltd. 1999 85

 of ``consultation overload'', but ask how they can encourage public
agencies to collaborate in working with user groups.
2. The danger of becoming reactive to of®cial agendas, rather than
determining their own priorities for action. Whilst of®cials might
question the representativeness of user groups, groups are nevertheless a
convenient source of views for of®cials who are expected to demonstrate
that they have consulted users. Constantly responding to the agendas of
of®cials could take up all the limited resources of groups.
3. Groups are often dependent (at least in part) on statutory agencies for
®nancial support (either grant aid or ®nance linked to contracts to
provide speci®c services such as advocacy). Activists are aware of the
potential inhibition on campaigning activities as a result of funding from
statutory agencies they could be criticizing. As groups mature and are
being drawn into better-established and sometimes formal relationships
with statutory authorities, they are starting to face dilemmas which have
been experienced by more traditional voluntary organizations in seeking
to maintain independence whilst also needing to secure funding (Lewis
1993).
4. Whilst a consumerist philosophy provides legitimacy for user involve-
ment, it also encourages a model of competing interest groups, or the
pursuit of individual rights, rather than encouraging collective action to
achieve social change. This was evident in the distinction drawn by some
of®cials between ``user involvement'' and ``user group involvement''. It
can also provide a point of difference and sometimes con¯ict within user
groups themselves.

Conclusion
Changes within systems of governance have provided opportunities for user
groups to engage with processes from which their members have previously
been excluded. User participation within systems of decision-making is
enabled and supported by separate organizationÐusers are often more
effective participants if they have the support of others and can link into
shared and common experiences, rather than speak solely from personal
experience. Whilst participation carries the dangers of incorporation, there is
also evidence of transformation taking place both in the processes of
governance and the service models emerging from dialogue between users
and producers (see Barnes 1997b).
Lovenduski and Randall wrote of the experience of those involved in the
women's refuge movement in the 1980s:

Because the government wanted to reduce the powers of the state by

devolving responsibilities to the community in the form of the voluntary
agencies, the refuge movement was able to gain ®nancial support from
the state. This enabled refuge collectives to assert feminist values. In
other words, as the form of the state changed, space was created for
feminist interventions. But the welfare bureaucracy was bound to

86 # Blackwell Publishers Ltd. 1999

 contest the erosion of its authority. The resulting political struggle is at
the heart of disagreements between feminist Women's Aid workers and
welfare professionals. (1993: 316±17).

Similar conclusions can be drawn about the relationship between user

movements and the local governance of welfare in the 1990s. Space has
opened up within the state which has enabled user movements to come in to
develop new forms of welfare, but that space is not being occupied without a
struggle. Nevertheless, becoming part of processes of governance is impor-
tant in itself. An underlying purpose of such groups is to campaign for the
inclusion of people previously excluded from mainstream society. Inclusion
within processes of governance is signi®cant because of the recognition of
competence, and the legitimacy of the presence of people previously
regarded as incompetent to participate within decision-making processes.
The election of a Labour government in May 1997 saw some evidence of a
shift from market competition as a lever for service improvement towards a
reassertion of (new) public service values. Two aspects of this suggest that the
relationships between user groups and health and social care services may
undergo some change as a result. First, community development is enjoying
something of a renaissanceÐparticularly in the context of regeneration
initiatives and as a means towards health improvement. Broader acceptance
of the collective ethos of community development may lead to increased
recognition of the value of collective organization amongst what I have called
here ``communities of identity'' amongst users of welfare services. Second,
public agencies are being enjoined not only to develop partnerships with
each other in order to deliver public policy objectives which are not capable
of achievement within the boundaries of any one agency, but also to develop
partnerships with community organizations for a similar purpose. Commu-
nities are no longer only a target for policy, but are also seen as a means of
delivering it.
But important questions remain. How feasible is it to talk of a real
``partnership'' with agencies which not only have substantially more power
in terms of both resources and in¯uence, but also power to control access to
the services needed by group members? Whilst the discourse is no longer that
of competitive markets within health and social care, competitive bidding is
becoming even more established as a route to new resources or preferential
treatment by government. The competitive bidding process introduced in
relation to the Single Regeneration Budget has been considered a valuable
model to adapt and adopt in contexts such as Health Action Zones, ``Best
Value'' sites within local government and the identi®cation of ``Beacons of
Excellence'' within the health service. There is increasing scope here for
statutory authorities to seek to play the user card in support of their
applications for the bene®ts associated with special status. And, since
communities can exclude as well as include, will the different voices of
disabled people and people with mental health problems be heard as locality-
based community groups enter into partnerships with public and private
sector agencies?

# Blackwell Publishers Ltd. 1999 87

Acknowledgement
The research referred to in this paper, ``Consumerism and Citizenship
amongst Users of Health and Social Care Services'', was funded by the
ESRC as part of its Local Governance Programme, award no. L 311253025.

Note
1. The article draws on research looking at self-organization amongst disabled
people and people with mental health problems, and the response of local
``of®cials'' to such groups. Where quotes are not referenced, they come from
interview transcripts from that project. References to publications arising from
the research are included in the References.

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