Advocacy and the Revolution of Empowerment(1)

Terry Simpson, Chair of the UK Advocacy Network (UKAN)(2), argues that, in mental health at least, advocacy and involvement are weakened by separation from the social movement they grew out of.

Everyone should have access to advocacy when they need it, and advocacy everywhere should have the same basic common principles, whatever the issue. However, while it’s true that all advocacy should have the same high standards, I think it’s also true that each individual’s requirements from advocacy will be different, and need a unique and tailor made response. I also think that advocacy for people who belong to groups that have been systematically disadvantaged may need to develop specific forms, and that this is particularly true of people who have experienced mental health labelling and the mental health system.

There are various reasons why doing advocacy in the field of mental health is different. People with mental health issues face the threat of being legally treated against their will. Our work as advocates involves supporting the views of our clients, but those very views are often judged as symptoms in the disputed territory of diagnosis and ‘mental illness’. If someone objects to forced treatment, and I support their version of reality, then I am in conflict not with individuals who are failing to do their job, but people who may be doing their job well, but in a system whose very nature is perceived to be oppressive.

My personal view, not a UKAN one, is that the mental health system as it currently operates is deeply oppressive in its very essence. The existence of a Mental Health Act, however well intentioned, immediately discriminates against a whole section of the population – those of us deemed to think differently from the rest of you. Legally sanctioned electric shock treatment can still be given compulsorily, even to people capable of arguing articulately against it, and thousands of people persuaded or forced to take psychiatric drugs die prematurely from the effects of those drugs each year. I think this oppression is on a par with racism and sexism, and will only be shifted by a social movement similar to the Black Civil Rights movement or the Women’s movement, led by those on the receiving end of it. Mental health advocacy in this country developed out of such movement, the Survivor, or User movement, and that movement needs to keep, or at least try to regain, control of it.

Advocacy and involvement in the field of mental health were part of a list of 15 ‘needs and demands’ produced by Survivors Speak Out, the campaigning group, after the Edale Conference in September 1987(3). That document refers to ‘provision of resources to implement self-advocacy for all users’, and ‘facility for representation of users and ex-users of services on statutory bodies’. Of the fifteen needs and demands most are still to be achieved, but advocacy and involvement seem to be areas where most progress has been made. However this has been at the cost of losing some of the original radical nature of these activities. The point I want to make by remembering this piece of history is that the fifteen points of the Edale conference taken together were a plan for a different kind of mental health system, based on respect and genuine partnership and participation. None of the fifteen were intended to stand alone, but were strands in an overall strategy to bring about a different way of thinking about and treating people with unusual and distressing experiences of the world. The end product was not a more efficient ride through an oppressive system for some individuals, but a different kind of system.

The grass roots movement that created the Edale Charter, also created the UK Advocacy Network (UKAN) in the early 1990s. The model of advocacy that UKAN proposed then had three strands. It included what is now ‘involvement’ as a form of advocacy (often referred to as ‘group’ or ‘self-advocacy’). We also proposed one to one long term citizen advocacy provided by volunteers, as well as advocacy provided by dedicated, one to one, paid advocates. These three strands would make for a balanced advocacy project, but it is the latter model that has become prevalent in the years since then. This casework model resembles social work or community nursing in its form, which is perhaps one reason why it has been so attractive to those outside the Survivors movement. It received a boost when the government latched on to advocacy as a possible means of sweetening the pill of changing the Mental Health Act to allow Community Treatment Orders, i.e. extending compulsory treatment to the community(4). While it undoubtedly helps individuals, the casework model of advocacy is limited in bringing about systemic changes. This does not have to be so, and advocacy groups can and should develop feedback mechanisms to managers and planners, but as reported in the last Planet Advocacy, these often fall on deaf ears(5).

One to one advocacy, both from long term citizens advocates, and paid professional advocates supports individuals, but group advocacy is equally important, which tackles systems. Without the second kind one to one advocacy can become ‘green tape’ – i.e. it allows a few individuals to have an easier passage through the system, but leaves the system unchanged.

‘Group’ advocacy developed in the UK from the mid 1980s, when the Nottingham Advocacy Group pioneered a system of patient’s councils following the Dutch model, where there was a nationally funded network of such groups. During the 1990s UKAN supported dozens of patients councils around the UK, which tackled general issues on mental health units. Usually these councils were rooted in local, often user led, advocacy projects. One to one ‘casework’ advocates would attend and support patients meetings in the hospitals, feed into them, and learn from them, about issues of mutual concern. This formed a powerful alliance, and when the government embarked on its plan to democratise the NHS, some of us hoped that, in mental health at least, plans for patients forums would build on the excellent work started by patients councils. Instead an entirely new structure was set up, the Patient and Public Involvement Forums (PPIs). I’m in no position to judge how successful they have been nationally, but my limited experience suggests that without grounding in local projects they suffered from bureaucracy and a lack of connection with local services. The PPIs are now in process of being reorganised, and are moving to the idea of more locally based LINks. Patients Councils, rooted in local advocacy projects, now look like a good example of what successful LINks might be.

Apart from such group advocacy, projects led by people who have experienced the mental health system at first hand tend to foster all kinds of user led initiatives. Lesbian and gay groups, Survivor’s Poetry groups and Hearing Voices groups are examples of the kind of groups that have been supported by UKAN members. This creates a pool of people who may be willing to engage in group advocacy, or even train to become one to one advocates, citizen or paid. If one of the aims of advocacy is to empower, then peripheral activities like these can be instrumental. For these reasons UKAN supports the idea of advocacy projects run by people who use services ourselves. A UKAN consultation document recently stated:

We do not intend to compromise our belief that advocacy is best provided by people who have experience of mental distress, and of using mental health services. We believe that where this is not immediately possible, and ‘allies’ run an advocacy organisation, the group should be actively working to maximise the involvement and empowerment of its members, and of the people using the service. Control by people who have used services should be an aim, however distant, of all groups providing mental health advocacy. We believe this to be the only stance toward management that is consistent with the underlying principles of advocacy as an attempt to redress power imbalances in mental health(6).

Articles on advocacy often tend to be about the technology of it, the nuts and bolts and day to day workings. This is important, but the politics and the philosophy of advocacy are important too, or we have no context for our work. It suits the structures of power very well that the basic unit of advocacy is a one to one relationship, and all that counts is whether the individual gets a good deal. But advocacy in mental health came about in a particular culture, at a particular time, to serve a particular function, which is to do with systemic change. In a previous issue of Planet Advocacy John Miles argued that independent advocacy is at a political cross roads, with one direction the route of ‘modernisation’, leading to ‘semi-statutory’ status, and the other the way of citizenship, which would link advocacy to ‘the political arena, to community development, legal aid, and the provision of advice and information’(7). I broadly agree with this analysis, and would hope the path for independent advocacy would be away from the control of the modernisers, and towards the political and the community. But I think also that in the field of mental health, independent advocacy needs to be rooted in the social movement it grew out of, the ‘survivor’, or ‘user’ movement, or it will end up lending credibility to an unfair system, rather than challenging it.

Terry Simpson

References

1.    Justin Dart, the disabled U.S. activist, speaking at the launch of the People’s True Freedom Commission in June 2002 (an antidote to the professionally controlled ‘Freedom Commission’ set up by the Bush administration), said ‘I propose that we of the disability communities unite with all who love justice to lead a revolution of empowerment’. Justin died shortly after making this statement, but his vision of a world-wide movement resonates.

2.    The UK Advocacy Network (UKAN) is a user controlled national federation of around 200 advocacy projects, patients’ councils, user forums and self-help and support groups working in mental health. Find out more, and how your group can join at www.u-kan.co.uk

3.    Some Things You Should Know About User/Survivor Action, Mind Resource Pack, by Peter Campbell 2006, available through Mind Publications

4.    Independent Specialist Advocacy in England and Wales : Recommendations for Good Practice, A study commissioned by the Department of Health, Di Barnes and Toby Brandon, June 2002

5.    Reasons to Listen, by Karen Mellanby, Planet Advocacy, March 2007

6.    Helping Ourselves, UKAN consultation document. Available on the UKAN website, see above.

7.    Citizenship and Modernisation, Choices for Independent Advocacy, by John Miles, Planet Advocacy, March 2007

This article appeared in Planet Advocacy, June - August 2007, Issue no. 20