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The Right to Participation of People with Mental Disabilities in Legal and Policy Reforms 

The Right to Participation of People with Mental Disabilities in Legal and Policy Reforms
The Right to Participation of People with Mental Disabilities in Legal and Policy Reforms

Oliver Lewis

and Nell Munro

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‘[T]he idea of citizen participation is a little like eating spinach: no one is against it in principle because it is good for you.’

Arnstein 1969:216


International policy documents related to improving the lives of people with mental disabilities and securing their human rights often emphasize the importance of involvement. However, involvement in this context is typically defined as involvement in personal health care related decisions1 and sometimes as involvement in planning services.2 The UN Convention on the Rights of Persons with Disabilities is the first binding human rights treaty to articulate the importance of involvement and participation in relation to people with disabilities, including those with mental disabilities. It enjoins states to secure the right of people with disabilities—including those with mental disabilities—to ‘effectively and fully participate in political and public life on an equal basis with others’.3

In this chapter we will argue that ensuring the participation of people with mental disabilities in the legal and policy reforms relating to their lives is a vital dimension to the realization of the full range of human rights. Promoting participation can improve the relevance, credibility, and qualitative outcome of reforms. It can also serve to empower people with mental disabilities and send a message to the wider community that people with mental disabilities are stakeholders in society with a right to have a voice in the legal and policy decisions which affect their lives. No one would expect regulations affecting industry, for example, to be reformed without close consultation with the stakeholders involved. The involvement of people with mental disabilities is just as central to the process as it is to any resultant law and policy reform.

There are, of course, many stakeholders whose participation in policy-making is necessary. The ‘direct users’ of mental health policy, including mental health service users, as well as carers, relatives, and mental health care professionals, are the primary stakeholders whom governments often involve in law and policy reform. The wider public, each of whom is a potential future mental health service user (including those who are taxpayers and voters) can also claim an entitlement to be heard,4 and to have a role in ensuring that policy reforms are both relevant and effective. The arguments we will make below about the advantages of securing the participation of people with mental disabilities apply equally to the wider public. However, in this chapter we will focus primarily on the participation of people who use mental health services, since it is their human rights which, we argue, can only truly be achieved through placing their needs, concerns, and aspirations at the front and centre of any reform process.

What is participation?

The terms participation and involvement, which we use interchangeably, frequently appear in the literature in this field. Because both terms are inherently vague, multiple values have been attached to them. For the purpose of this chapter and the sake of clarity we refer to service user involvement as occurring when the participation of people who use or have used mental health services in any capacity is treated as integral to the processes of legal and policy reform. Practices which can help to secure involvement are explored throughout this chapter, and include actively responding to calls for policy reform initiated by people with mental disabilities, facilitating their participation in policy planning, consulting with people with mental disabilities on policy documents, and employing people with mental disabilities to evaluate and monitor the implementation and effectiveness of new laws and policies.

Participation is necessary when the objective of legislators and policy-makers is to achieve change which reflects the values and concerns of service users. Consultation can be carried out purely for the politically correct but ultimately vacuous purpose of legitimizing policies which may nevertheless be criticized for allowing for underfunded, discriminatory, or excessively coercive practices (Harrison and Mort 1998). The motives of those who claim that they are promoting involvement should, therefore, always be closely scrutinized.

Promoting participation may make policy implementation more efficient

The argument advanced by the World Health Organization is that including service users in decision-making relating to service planning ‘should lead to services being better tailored to people’s needs and better used’ (WHO 2001:xii). We would argue that this is also true at the level of law and policy-making. Using a wide range of participation methods can help to achieve a wide range of better outcomes for policy reforms.

The logic of this argument is that policy reforms which have been designed in consultation with all stakeholders are more likely to be effective in practice. However, to be confident of the validity of this assertion it is necessary to unpack it a little. Historically, societies have not viewed people who have mental disabilities as relevant stakeholders when it comes to designing the laws and policies which affect their lives. Other stakeholders have been consulted: governments around the world have long recognized the need to secure the support of the psychiatric profession for legal reforms which will affect their practice and the lives of their patients. But service users have been excluded. This phenomenon is common to other branches of health care. However, over the last twenty years across a number of countries there has been a shift towards the promotion of user involvement in personal health care planning and service planning. These changes have been attributed to, amongst other things, neo-liberal economic policies which link consumer choice to the efficient allocation of resources (Barnes and Prior 1995), a loss of public confidence in medicine, a desire on the part of service users to challenge paternalism (Rowe and Shepherd 2002), and a belief on the part of policy-makers that user involvement may be the best way to drive up quality and improve health outcomes (Rutter et al. 2004).

This final argument of improving health outcomes has encountered some criticism. One systematic review of the research on health care involvement conducted in 2002 found that there was as yet no evidence base to support claims that user involvement promoted improvements in care quality or patient satisfaction (Crawford et al. 2002). In addition, several studies have demonstrated that the adoption of policies to promote involvement do not automatically lead to service users describing themselves as experiencing participation in practice.5 However, it is significant that these difficulties and the absence of an evidence base for some claims have not been interpreted as a justification for giving up. It is important to emphasize that, behind disputes about the function and object of involvement, there appears to be a growing normative consensus that involving service users, including service users with mental disabilities, in the decisions which affect them, is unarguably the right thing to do.

Participation as a human right

Steiner identifies two ways in which participation has been expressed as a human right: ‘the relatively vague and abstract right to take part in the conduct of public affairs or government and the relatively specific right to vote in elections’ (Steiner 1988). The right to vote which is enshrined in various legal texts,6 as well as the parallel right to stand for election, although people with mental disabilities are often denied the benefit of these rights. It is indicative of the invisibility of people with disabilities within public life that in many countries they are not legally entitled to exercise their right to vote because they have been deprived of their legal capacity.7

The abstract right ‘to take part’ tends to prove more contentious, simply because states have competing conceptions of when, why, and how to facilitate citizen participation. The United Nations Convention on the Rights of Persons with Disabilities (CRPD) does, however, define this concept for the purposes of international human rights law. The CRPD was adopted because it was felt that the pre-existing human rights mechanisms had failed to provide for the rights of persons with disabilities. The convention specifies that term persons with disabilities ‘include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others’.8 The disability-specific convention represents a paradigm shift from viewing persons with disabilities as objects of management, treatment, pity, and fear, towards persons with disabilities as subjects of the full range of human rights on an equal basis with others.

The CRPD establishes a committee at the United Nations level whose members are experts responsible for periodically monitoring state compliance with the CRPD for those states which have ratified the convention and for interpreting the convention generally. The committee also adjudicates upon individual cases brought by individuals against states which have ratified the Optional Protocol to the CRPD.

The CRPD recognizes participation rights in several places. It requires states to ‘closely consult with and actively involve persons with disabilities’ in the development and implementation of legislation and policies to implement the convention and other decision making processes that concern them.9 Because much depends on local context, the convention provides no definitions of consultation or involvement nor does it provide any guidance as to how states are supposed to consult and involve.

The CPRD further obliges states to create a society where people with disabilities can ‘effectively and fully participate in the conduct of public affairs without discrimination and on an equal basis with others, and encourage their participation in public affairs’.10 Specifically, states are expected to encourage the participation of people with mental disabilities in non-governmental organizations and associations,11 including organizations and associations which represent people with disabilities at international, regional, national, and local levels.12 The CRPD explicitly provides that such organizations should be involved with and participate fully in the national independent bodies responsible for promoting, protecting, and monitoring the implementation of the convention,13 giving people with disabilities an explicit role in assessing the performance of state bodies in implementing the convention.

Participation in health policies at the local, national, and international levels had already been a principle under international human rights law well before the entry into force of the CRPD in May 2008.14 The right to health is located in Article 12 of the International Covenant on Economic, Social and Cultural Rights, a 1966 treaty which many states worldwide have ratified, legally binding themselves to the provisions therein.15 This provision has been authoritatively interpreted to include ‘the participation of the population in all health-related decision-making at the community, national and international levels’.16 In 2005 the UN Special Rapporteur on the Right to the Highest Attainable Standard of Physical and Mental Health (hereinafter ‘Special Rapporteur’) stated that ‘the right of persons with mental disabilities to participate in decision-making processes that affect their health and development, as well as in every aspect of service delivery, is an integral part of the right to health’,17 thus emphasizing that the obligation on states to respect, protect and fulfil the right to health includes the obligation to involve the citizenry in development of health and related policies. Commenting specifically on participation in public policy-making, the Special Rapporteur says in the strongest terms:

It is essential that persons with mental disabilities, and their representative organizations, are involved at all stages of the development, implementation and monitoring of legislation, policies, programmes and services relating to mental health and social support, as well as broader policies and programmes, including poverty reduction strategies, that affect them. States should affirmatively solicit their input. As providers of care and support, family members also have an important contribution to make in legislative and policy processes, as well as decisions concerning care. Involving mental health-care users, their families and representative organizations, and encompassing their perspectives in the design and implementation of all relevant initiatives, helps to ensure that the needs of persons with mental disabilities are met.18

The Special Rapporteur additionally expressed that states should support people with disabilities who may have problems in making or communicating decisions. The CRPD solidifies this by placing a legal obligation upon states to ensure that people have the support that they need in order to exercise their legal capacity.19

If participation in policy-making is a right, how can it be enforced by those who claim they are victims? In some jurisdictions it may be argued that the right to participate is inherent in the right to respect for private life. The European Court of Human Rights has in at least two cases indicated that process is important in determining whether there has been a breach of the right to private life. In Hatton v UK, a case brought by applicants who advocated against night flights at London’s Heathrow airport, the European Court of Human Rights said that in connection with the procedural element of its review of cases involving environmental issues it ‘is required to consider all the procedural aspects, including the type of policy or decision involved, the extent to which the views of individuals (including the applicants) were taken into account throughout the decision-making procedure, and the procedural safeguards available’.20 As Olivier de Schutter has suggested, such an analysis could be applied to policy measures which affect people with disabilities. This would ‘require public authorities, before adopting such measures, to seek information about the extent of such an impact, the available alternatives, and the means by which the impact could be reduced and kept to a minimum’ (de Schutter 2005).

User involvement may secure broader human rights compliance

To date, little research has assessed the level, or considered the significance, of involving service users with mental disabilities at the level of national policy-making and legislative reform. However, in other regulatory contexts it is often argued that key stakeholders must be included at the earliest stage of law and policy reform in order to improve their effectiveness. This early participation can help to ensure that reforms will not have an unnecessarily detrimental impact upon the operations of the sector to be regulated. In many cases the cooperation of regulated businesses or public sector agencies is necessitated by the fact that this will be the only way to ensure their compliance with the proposed regulation. Detecting breaches of the law and promoting compliance through enforcement mechanisms may all be complicated in situations where regulators have little actual knowledge of the operations of the regulated sector and where traditional punitive enforcement mechanisms have only a minimal impact (Baldwin and Black 2008).

This argument applies equally well in the case of laws relating to mental disability. Regulatory oversight of mental health service provision in the UK and North America has traditionally taken the form of specialist inspections and audits. In mental health and social care institutions inspectors may have the opportunity to observe and report on human rights abuses. However, independent inspectorate systems simply do not exist in many countries21 and there are serious concerns about efficacy in those where they do exist.22 In addition, focusing only on settings where people are detained means that the use and abuse of coercive practices in the community are ignored.23 In both contexts it is service-users who are present in the setting all the time who should be seen as offering the first line of defence against abusive practice and excessive uses of coercion. In reforming mental health law and policy to promote human rights, service users should be considered key stakeholders, whose participation in monitoring and evaluation may determine the likely effectiveness of the policy in question.

Participation contributes to securing equality and dignity

Ultimately, promoting the participation of people with mental disabilities in law and policy-making sends out powerful messages to the wider society about what it means for all people to be ‘born free and equal in dignity and rights’.24 In defining dignity, Nordenfelt distinguishes between the broad concept of human dignity which typically underpins human rights and which is held equally by all individuals by dint of their common humanity, and a dignity of identity which is grounded in individual integrity and autonomy (Nordenfelt 2004). Violations of the dignity of identity may leave an individual with a permanent sense of injury to his or her self-respect, which cannot readily be restored or reversed.

Experiencing mental disability places individuals at a great risk of experiencing violations of their dignity of identity. Individuals with mental disabilities experience not only the possibly distressing effects of their condition, but also of legal coercion, stigma, and resultant social exclusion. Indeed, the fragility of personal identity has been cited as a considerable limitation upon efforts to promote mental health service user involvement.25 The problem of how to secure meaningful and effective participation in legal and policy reform is therefore a dimension of the wider problem of ensuring that the human rights of people with mental health disabilities are protected. A government-led programme which validates people with mental health disabilities as experts in relation to their own lives, takes heed of their wishes when initiating reform, and proactively seeks out their counsel when defining its own agenda for reform could go a long way towards challenging the ways in which the opinions of people with mental disabilities are systematically discredited.

Actively promoting participation strengthens democratic societies

Theorists of democracy often claim that recognizing social difference and attempting to accommodate the diverse needs of social groups who experience cultural or structural inequalities can help to promote dynamic and robust democratic societies. Critics of such an approach argue that according special status to identity-based political movements can serve to reify social difference, or simply displace exclusion from the margins of society to the margins of a plethora of different special interest groups (Young 2000).

Within these debates attention is typically focused upon social movements such as the civil rights movement in the US, or upon second wave feminism, where the establishment of a robust political identity for the excluded community was central to the achievement of their aims. It is not clear that an equivalent social movement constructed around a positive assertion of shared interests by people with mental disabilities either has or could emerge (Barnes 1999; Crossley 1999). Whilst there are associations of users their profile both nationally and internationally is often low and most national and local mental health policy reforms processes are neither initiated nor led by users affected by these policies. Some consequences of this are discussed on [link].

As Young points out, however, social difference is not identity (Young 2000:87). Political groupings which are defined as identity-based tend to emerge when they share a positive desire to challenge structural inequalities and not out of a negative or exclusionary desire to promote only the interests of those who share their attributes. Democratic societies benefit from the inclusion of different perspectives within debates about law and policy reform because airing conflicting views, and allowing the expression of diverse and sometimes uncomfortable opinions enables conflicts to be defined, refined and ultimately resolved: ‘A democratic plurality ought to be fully inclusive because the plurality of perspectives they offer helps to disclose the reality and objectivity of the world in which they dwell together’ (Young 2000:112).

Techniques for promoting participation

Arnstein’s seminal critique of so-called participation practices argued that in many cases citizens were being called upon to legitimize otherwise unpopular policies or to act as window-dressing for processes that were ultimately undemocratic. She argued that citizen participation should be modelled as a ladder: the higher up the ladder of participation a practice is, the greater the degree of power citizens have over the outcome. This is depicted in Figure 34.1. In her words, ‘citizen participation is a categorical term for citizen power. It is the redistribution of power that enables the have-not citizens, presently excluded from the political and economic process, to be included in the future’ (Arnstein 1969).

Figure 34.1 A ladder of citizen participation

Figure 34.1
A ladder of citizen participation

Arnstein, SR, ‘A Ladder of Citizen Participation’, Journal of the American Institute of Planners 35 (4), p.216 © 1969, Taylor and Francis.

Criticism has been levied against the ladder model because by focusing on power, being linear, and posing a dichotomy of included/excluded, it ‘fails to capture the dynamic and evolutionary nature of user involvement’ (Tritter and McCallum 2006). However, the ladder model provides a useful reminder of the relationship between power and participation. Participation typically needs to be facilitated by policy-makers who can determine the degree of control other stakeholders have over the process. Stakeholders whose cooperation may be central to the success of a policy in practice will typically be granted an audience. People with mental disabilities, on the other hand, who can be managed, leveraged, or compelled to adhere to the policies which affect them may not be so fortunate.

With this in mind, the first consideration for policy-makers when attempting to promote participation needs to be ‘How serious are we about ensuring participation?’ Policy-making is likely to become more fraught and challenging if the values and concerns of people with mental disabilities are heard, listened to, officially recognized, and acted upon. Other stakeholders may complain that their views are not being accorded proper attention and the wider community may be sceptical about the decisions which are reached through this process. Involving more stakeholders creates a greater potential for disagreements (perhaps previously unarticulated), and a greater likelihood that fundamental conflicts will emerge which cannot readily be resolved. These tensions within the policy-making process create powerful incentives for policy-makers to ignore, discredit, and exclude people with mental disabilities. In considering how to promote participation, we have asked what are the possible pitfalls of the various techniques available rather than downplay the significance of this tension.

When and where to seek participation

It is sometimes the case that socially marginalized ‘groups’ are able to identify and lobby effectively for the policy changes they desire. In other words, they initiate the reform process. However, it is typical that because of the social exclusion faced by people with mental disabilities, their participation is usually sought only after policy-makers have identified the need for policy reform. We identify three key points in the policy-making process when participation can be actively facilitated, and consider the potential shortcomings of involvement at each stage. This chapter is not intended to offer guidance as to how the problems we identify could be overcome, as this will be dependent on the local context, the financial and time resources available and the dynamism and skills set of the individuals involved. What we do suggest is that those wanting to ensure participation discuss the pros and cons of each methodology as well as adopting a strategy to overcome potential problems (this process itself would benefit from the participation of affected groups).

Who should be involved, and who is responsible for facilitating their participation?

The CRPD makes clear that states need to take proactive measures to facilitate the political participation of people with disabilities, including people with mental disabilities. However, in order to achieve this, states first have to identify whose participation they are aiming to encourage. The effects of stigma and social exclusion may mean that people with mental disabilities are reluctant to own this as a part of their social identity and may be reluctant to participate in policy-making. In turn, the stakeholders who do participate may be subject to criticism for being unrepresentative and not capable of legitimately reflecting the interests of people with mental disabilities. Furthermore, a diagnosis of mental disability is not always static over time. Individuals who are the centre of mental disability policy at one time may not be at another time. Others, who have may not have seen its direct relevance on their lives may nonetheless come to rely on mental disability policy in time.

The problem of identity has already been raised in much of the research in service user participation in service planning and delivery.26 People with mental disabilities report feeling ambivalent about being accorded a status as ‘service users’ or consumers. They may avoid efforts made to foster their participation either because they wish to obscure this dimension of their identity from public view, or because they resent having an identity as ‘mentally disabled’ placed upon them when it does not reflect their own self perception. In addition, people with mental disabilities express heterogeneous views about services (Lammers and Happell 2003), and may not identify with the non-governmental organizations and other activist bodies which claim to act in their name. This is sometimes used to reinforce the claim that the minority of people with mental disabilities who work as activists are outliers pursuing purely personal agendas. This serves to delegitimize the voices of people with mental disabilities. Importantly, there is some evidence that the fact that only a minority of service users actively express a particular view does not automatically mean that this view is not representative of the majority (Crawford and Rutter 2004). However, the problem of identifying whose views should be treated as relevant remains difficult to resolve.

One approach is to adopt a broad definition of relevant stakeholders. Pollitt argues that all of us have the potential to become future users of mental health services, and all citizens are affected by policy to the extent that they are current tax payers (Pollitt 2003). This is a sound argument for making sure that as wide a cross-section of the community is consulted upon proposed policy reforms as possible. But it creates problems for policy-makers trying to identify who to pro-actively seek to engage in policy-making at earlier stages of the process. It also does not address the question of how much credit should be accorded to the views of those have a mental disability in the present, as opposed to those who may acquire that status in the future.

A concrete answer to the question of whose participation should be encouraged creates a danger of perpetuating the very injustice we are seeking to redress. States have ignored the wishes and feelings of people with mental disabilities for so long because they have viewed them as incapable of forming valid opinions upon the decisions which most affect them. If we attempt to redress this by defining a specific subset of this population as being relevant stakeholders whilst excluding others as not healthy enough, educated enough, or affected enough to be worthy of attention then we simply relocate this problem without resolving it. It is not the case that there is a definable population who should always be included within policy-making, and a larger population whose participation may or may not be relevant. Rather, each policy question requires policy-makers to engage with this issue anew.

Who bears the responsibility of ensuring participation?

International human rights law places the responsibility for ensuring the enjoyment of human rights clearly upon the shoulders of the government. The ministries, departments, and individuals which bear these responsibilities vary across states and across regions within states in federal systems. We emphasize here the need for buy-in from the highest levels of government for participation to have any impact. This means government ministers, heads of department, directors of quasi-governmental agencies, and so on.

The responsibility extends beyond a duty to ensure that users are involved, because involvement needs to be effective and appropriate. Extra resources may be required to pay service users for their time and cover expenses. Coupled with the duty to involve is that states also have a duty to build the capacity of disabled people’s organizations. The Special Rapporteur on the Right to Health has said that ‘States should support the development and strengthening of advocacy groups of persons with mental disabilities’,27 and the CRPD obliges states to ‘promote actively an environment in which persons with disabilities can effectively and fully participate in the conduct of public affairs’ by way inter alia of participation in nongovernmental organizations (NGOs) and political parties.28

Given the power imbalances within mental health systems, there is a special duty placed upon mental health professionals to ensure that people with mental disabilities are involved in law and policy reform. Observing this duty does not necessarily give rise to a conflict of interests. As we have pointed out, the World Health Organization considers participation to generate health benefits both for individuals and community. Professionals sometimes express sceptical attitudes to participation and involvement and professional bodies may therefore also play a particularly important role in ensuring that participation is nonetheless promoted (Soffe et al. 2004; Summers 2003).

Lastly, people with mental disabilities and their representative organizations can demand participation. If they do not get it, they should contact local and domestic bodies which may be able to help: parliamentary committees, national human rights structures such as an ombudsperson or a commission. If this fails, NGOs are advised to seek the input from international actors such as the UN Special Rapporteur on the Right to Health, UN Special Rapporteur on Disability, and UN Committee for the Rights of Persons with Disabilities (where the state has ratified that Convention). There may be regional mechanisms or positions which NGOs can turn to, such as the Commissioner for Human Rights of the Council of Europe.


Participation in political and public life is as important for people with mental disabilities as it is for any other person. We have argued that beyond its importance for them, participation of people with mental disabilities in the policy cycle is useful for policy makers, as the policy and legislative outcomes will be more responsive to needs, and will more likely be effectively implemented.

The participation of people with disabilities has often been overlooked in favour of measures of protection, treatment, and exclusion.29 The CRPD changes this by placing the rights of people with mental disabilities on an equal footing with the disability rights movement more generally and placing an emphasis on the state’s active responsibility to secure participation on an equal basis with others, rather than merely requiring the state not to exclude.

We recommend that policy makers bear in mind three key principles as they ensure the participation of people with mental disabilities. First, the values and concerns of people with mental disabilities, as well as those without, should be central to the decisions which affect their lives. Second, participation in law and policy-making is a matter of human rights: national legislatures should put structures in place to ensure participation. Third, policy-makers should think in terms of maximizing participation by using a variety of methodologies, rather than thinking of doing the minimum necessary to legitimize their actions.

The UN Convention on the Rights of Persons with Disabilities provides a right to policy participation and has come into force at a time when states worldwide are beginning to recognize the importance of the views of consumers of health and welfare services in determining their delivery. However, as this chapter has sought to demonstrate, the limits of meaningful participation are not easy to define, and there is no simple recipe to overcome the challenges which proper participation creates.


The authors would like to thank Joyce Chamberlain and two anonymous reviewers for their helpful comments on a previous draft.


Arnstein, SR (1969) ‘A Ladder of Citizen Participation.’ Journal of the American Institute of Planners, 35(4), 216–24 accessed 26/1/12.Find this resource:

Baldwin, R and Black, J (2008) ‘Really Responsive Regulation’, The Modern Law Review, 71(1), 59–94.Find this resource:

Barnes, M and Prior, D (1995) ‘Spoilt for Choice? How Consumerism can Disempower Public Service Users’, Public Money and Management, 15(July–September), 53–58.Find this resource:

Barnes, M and Shardlow, P (1996) ‘Identity Crisis: Mental Health User Groups and the “Problem” of Identity’, in C Barnes and G Mercer (eds) Exploring the Divide: Illness and Disability. Leeds:The Disability Press, 114–34.Find this resource:

    Barnes, M (1999) ‘Users as Citizens: Collective Action and the Local Governance of Welfare’, Social Policy and Administration, 33(1), 73–90.Find this resource:

    Bartlett, P, Lewis, O, and Thorold, O (2007) Mental Disability and the European Convention on Human Rights. Leiden: Martinus Nijhof Publishing, 149–75.Find this resource:

      Beazley, M, Griggs, S, and Smith, M (2004) ‘Rethinking Approaches to Community Capacity Building’, discussion paper. School of Public Policy, Birmingham: University of Birmingham, as cited in Block 2, Doing Public Policy. Open University.Find this resource:

        Beresford, P (2006) ‘Service Users, Social Policy and the Future of Welfare’, in L Budd, J Charlesworth, and R Paton (eds) Making Policy Happen. London: Routledge and Milton Keynes: The Open University, 141–152.Find this resource:

          Connor, H (1999) ‘Collaboration or Chaos: A Consumer Perspective’, Australian and New Zealand Journal of Mental Health Nursing, 8, 79–85.Find this resource:

          Crawford M, Rutter D, Manley C, et al. (2002) ‘Systematic Review of Involving Patients in the Planning and Development of Health Care’, British Medical Journal, 325, 1263–67.Find this resource:

          Crawford, M and Rutter, D (2004) ‘Are the Views of Mental Health User Groups Representative of those of “Ordinary” Patients? A Cross-sectional Survey of Service Users and Providers’, Journal of Mental Health, 13(6), 561–8.Find this resource:

          Crossley, N (1999) ‘Fish, Field, Habitus and Madness: The First Wave Mental Health Users Movement in Great Britain’, British Journal of Sociology, 50(4), 647–70.Find this resource:

          Harrison, S and Mort, M (1998) ‘Which Champions, Which People? Public and User Involvement in Health Care as a Technology of Legitimation’, Social Policy and Administration, 32(1), 60–70.Find this resource:

          Hodge, S (2005) ‘Participation, Discourse and Power: A Case Study of Service User Involvement’, Critical Social Policy, 25(2), 164–79.Find this resource:

          Hodge, S (2005) ‘Competence, Identity and Intersubjectivity: Applying Habermas’s Theory of Communicative Action to Service User Involvement in Mental Health Policy Making’, Social Theory and Health, 3(3), 165–82.Find this resource:

          Lammers, J and Happell, B (2003) ‘Consumer Participation in Mental Health Services: Looking from a Consumer Perspective’, Journal of Psychiatric and Mental Health Nursing, 10(4), 385–92.Find this resource:

          Lester, H, Tait, L, England E, and Tritter J. (2006) ‘Patient Involvement in Primary Mental Health Care: A Focus Group Study’, British Journal of General Practice, 56(527), 415–22.Find this resource:

          Monahan, J, Redlich, AD, Swanson J, et al. (2005) ‘Use of leverage to improve adherence to psychiatric treatment in the community’, Psychiatric Services, 56(1), 37–44.Find this resource:

          Nordenfelt, L (2004) ‘The varieties of dignity’, Health Care Analysis, 12(2), 69–81.Find this resource:

          Peck, E, Gulliver P, and Towel D. (2002) ‘Information, Consultation or Control: User Involvement in Mental Health Services in England at the Turn of the Century’, Journal of Mental Health, 11(4), 441–51.Find this resource:

            Pollitt, C (2003) The Essential Public Manager. Maidenhead: Open University Press.Find this resource:

              Rowe, R and Shepherd, M (2002) ‘Public Participation in the NHS: No Closer to Citizen Control?’, Social Policy and Administration, 36(3), 275–90.Find this resource:

              Rutter, D, Manley, C, Weaver T, Crawford, MJ, and Fulop, N, (2004) ‘Patients or Partners? Case Studies of User Involvement in the Planning and Delivery of Adult Mental Health Services in London’, Social Science and Medicine 58, 1973–84.Find this resource:

              de Schutter, O (2005) ‘Reasonable Accommodations and Positive Obligations in the European Convention on Human Rights’, in A Lawson and C Gooding (eds) Disability Rights in Europe. Oxford: Hart Publishing, 35–63.Find this resource:

                Soffe, J, Read, J, and Frude, N (2004) ‘A Survey of Clinical Psychologists’ Views regarding Service User Involvement in Mental Health Services’, Journal of Mental Health, 13(6), 583–92.Find this resource:

                Speed, E (2007) ‘Discourses of Consumption or Consumed by Discourse? A Consideration of what “Consumer” means to the Service User’, Journal of Mental Health, 16(3), 307–318.Find this resource:

                Steiner, HJ (1988) ‘Political Participation as a Human Right’, Harvard Human Rights Yearbook, 1(1), 77–134.Find this resource:

                  Summers, A (2003) ‘Involving Users in the Development of Mental Health Services: A Study of Psychiatrists’ Views’, Journal of Mental Health, 12(2), 161–74.Find this resource:

                  Tritter, JQ and McCallum, A (2006) ‘The Snakes and Ladders of User involvement: Moving beyond Arnstein’, Health Policy, 76, 156–68.Find this resource:

                  World Health Organization (2001) The World Health Report: 2001: Mental Health: New Understanding, New Hope. Geneva: World Health Organization.Find this resource:

                    Young, IM (2000) Inclusion and Democracy. New York: Oxford University Press, 83–120.Find this resource:


                      1 For example Principle 11(9) of the Principles for the Protection of Persons with Mental Illness and the Improvement of Mental Health Care (1991) states that ‘Where any treatment is authorized without the patient’s informed consent, every effort shall nevertheless be made to inform the patient about the nature of the treatment and any possible alternatives and to involve the patient as far as practicable in the development of the treatment plan.’

                      2 For example Recommendation 5 of World Health Organization (2001) The World Health Report 2001: Mental Health: New Understanding, New Hope states that ‘Communities, families and consumers should be included in the development and decision- making of policies, programmes and services. This should lead to services being better tailored to people’s needs and better used. In addition, interventions should take account of age, sex, culture and social conditions, so as to meet the needs of people with mental disorders and their families.’

                      3 United Nations Convention on the Rights of Persons with Disabilities (2006) Art. 29(a).

                      4 See, for example, Pollitt, C (2003) The Essential Public Manager. Open University Press.

                      5 Hodge, S (2005) ‘Participation, Discourse and Power: A Case Study of Service User Involvement’, Critical social policy, 25(2), 164–179; Lester, H, Tait, L, et al. (2006) ‘Patient Involvement in Primary Mental Health Care: A Focus Group Study’, British Journal of General Practice, 56(527), 415–422; Peck, E, Gulliver, P, et al. (2002) ‘Information, Consultation or Control: User Involvement in Mental Health Services in England at the Turn of the Century’, Journal of Mental Health, 11(4), 441–451; Rutter, D, Manley, C, et al. (2004) ‘Patients or Partners? Case Studies of User Involvement in the Planning and Delivery of Adult Mental Health Services in London’, Social Science and Medicine 58, 1973–1984.

                      6 Art. 25 of the International Covenant on Civil and Political Rights, Art. 29 of the Convention on the Rights of Persons with Disabilities.

                      7 See, for example, the series of reports on guardianship and human rights produced by the Mental Disability Advocacy Center, available from and Bartlett, P, Lewis, O, and Thorold, O (2007) Mental Disability and the European Convention on Human Rights. Martinus Nijhof Publishing, 149–175.

                      8 CRPD, Art. 1.

                      9 CRPD, Art. 4(3).

                      10 CRPD, Art. 29(b).

                      11 CRPD, Art. 29(b)(i).

                      12 CRPD, Art. 29(b)(ii).

                      13 CRPD, Art. 33(3).

                      14 As well as the United Nations examples below, see for example the opinion of the European Committee on Social Rights, which interpreted Art. 15(3) of the Revised European Social Charter, to include the provision that, ‘persons with disabilities and their representative organizations should be consulted in the design, and ongoing review of such positive action measures [seeking to improve the integration of people persons with disabilities in the life of the community] and that an appropriate forum should exist for this to happen’ (Conclusion on Slovenia, 2003–1, 507), as cited in de Schutter, O (2005) ‘Reasonable Accommodations and Positive Obligations in the European Convention on Human Rights’, in A Lawson, and C Gooding (eds) Disability Rights in Europe. Hart Publishing.

                      15 160 states had ratified the UN Covenant on Economic, Social and Cultural Rights at the time this chapter was finalized (1 January 2009).

                      16 UN Committee on Economic, Social and Cultural Rights, General Comment No. 14 (2000), para. 11.

                      17 2005 Annual Report to the Human Rights Commission, by the UN Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health, Paul Hunt, Reference number E/CN. 4/2005/51, 11 February 2005.

                      18 See Hunt above, n. 17, para. 60.

                      19 Art. 12(3). See also Chapter 10: ‘Universal legal capacity as a universal human right’.

                      20 Hatton and others v UK, European Court of Human Rights, Application No. 36022/97, Grand Chamber judgment 8 July 2003, para. 104.

                      21 An indicator of this is that at the time of writing this chapter only forty states had ratified the Optional Protocol to the UN Convention against Torture, a legal instrument which obliges states to establish independent prevention mechanism to monitor the human rights of people in places of detention which includes mental health and social care institutions.

                      22 Mental Disability Advocacy Center (2006) Inspect! Inspectorates of mental health and social care institutions in the European Union available online at:, accessed 12 May 2010.

                      23 The scope for coercion in the community extends beyond the use of explicit Community Treatment Orders, strategies such as withholding a proportion of welfare benefits or attaching conditions to the availability of social housing have also been employed to promote treatment compliance, see: Monahan, J, Redlich AD, et al. (2005) ‘Use of Leverage to Improve Adherence to Psychiatric Treatment in the Community’, Psychiatric Services, 56(1), 37–44.

                      24 Art. 1, Universal Declaration of Human Rights, 1948.

                      25 Barnes, M and Shardlow, P (1996) ‘Identity Crisis: Mental Health User Groups and the “Problem” of Identity’, in C Barnes and G Mercer, Exploring the Divide: Illness and Disability. Leeds: The Disability Press; Hodge, S (2005) ‘Competence, Identity and Intersubjectivity: Applying Habermas’s Theory of Communicative Action to Service User Involvement in Mental Health Policy Making’, Social Theory and Health, 3(3), 165–182; Speed, E (2007) ‘Discourses of Consumption or Consumed by Discourse? A Consideration of what “Consumer” means to the Service User’, Journal of Mental Health 16(3), 307–318.

                      26 See n. 25.

                      27 See Hunt above, n. 17, para. 61.

                      28 CRPD, Art. 29(b).

                      29 Declaration on the Rights of Mentally Retarded Persons (1971), Principles for the Protection of Persons with Mental Illness and the Improvement of Mental Health Care (1991).