The MAD alliance: An alternative paradigm for mental health
MENTAL HEALTH IN THE UK is in extreme crisis. This does not just come from eight years of austerity cuts. Mental health is stuck in a time warp which leaves people in mental distress and their loved ones in a failing system, riddled with discrimination, framed by legislation that is not appropriate, delivered by professionals in institutions and organisations using out of date methods and medication rooted in the medical and psychosocial models of the last century. The UN is so concerned about this situation it is calling for a complete overhaul of the legislation.
There are particular issues for people who are made subject to the Mental Health Act, with people from BAME communities often affected particularly disproportionately and badly. The Mental Health Act authorises detention and compulsory treatment for people diagnosed with a (serious) mental disorder when they/others are thought to need protection.
This authorisation removes their right under Article 19 of the UN Convention on the Rights of Persons with Disabilities (UNCRPD) to live in the community, choose their place of residence and exercise choices on an equal level with others.
Detention and compulsory treatment, whether exercised through an inpatient setting, or a community treatment order, also run contrary both to Article 12 and to Article 14 of the convention. Thus the UNCRPD committee has recommended an end both to substitute decision-making and to “compulsory treatment and detention of persons with disabilities on the basis of actual, or perceived impairment”. In both hospital and other settings, the UNCRPD guidance also includes an end to the use of physical and chemical restraint.
The effects of austerity cuts make a bad situation even worse. Mental health services have seen cuts to funding while those for physical health have seen a rise in their budgets. The much championed ‘parity of esteem’ is a myth and a smokescreen championed by politicians who are responsible for voting through vicious cuts to mental health services. The cuts to bed numbers in NHS hospitals mean that young people and adults in mental distress continue to be sent many miles away from their homes and families to receive treatment.
The destruction of community-based assertive outreach, homelessness, drugs and alcohol services has seen shocking rises in suicides and unexplained deaths of patients under the care of NHS mental health services. Cuts mean long waiting lists, delays to treatment, premature discharge and a lack of post-discharge support in the community.
Mental health and disabled people’s user-led organisations (DPOs), public lawyers and academics share concerns that the Mental Capacity (amendment) Bill currently passing through Parliament will weaken protections and the duty to consider the best interests of the person in authorising deprivation of liberty. Yet if the balance of opinion is that the UK psychiatric system is in crisis - services increasingly cut, underresourced and failing more and more people - there is also an emerging view that is growing with increasing force.
The very underpinnings of the current psychiatric system are being called into question. Its psychiatric and biomedical assumptions, diagnostic categories (which are increasingly evidenced to be eurocentric, discriminatory, racially biased and unreliable) and overreliance on drug 'treatments' which tend to be used indiscriminately, are all being challenged with evidence and authority. But what is most groundbreaking is that this is not an attack launched by dissident professionals - radical psychologists who feel overpowered by the dominance of psychiatrists or some equivalent of the anti-psychiatry of the 1960s. Instead this is a movement which has been spearheaded by mental health service users/survivors themselves.
This is the international Mad Studies movement. Originating in Canada, and signalled by the publication of Mad Matters in 2013, it has already led to an explosion of activity in the UK and overseas which is grassroots led, by mental health service user activists, writers, researchers and educators. This is one of its defining features: that those who have been on the receiving end of often abusive, discriminatory and controlling mental health services are the vanguard for building new alliances to rethink how we understand and respond to the madness and distress that human beings are heir to.
“Mad” continues to be a contentious word, not surprising given the abusive, pejorative and devaluing way it has long been used. It is contentious still among survivors too. But it is the term which has been adopted by this new movement. It has been deliberately revisited in this way to show a determination to reclaim the word by those who identify as service users, as experiencing distress, and their allies. Because it is identifying new alliances, between madness and new social movements with labour movements, environmentalism and progressive politics, it offers hope of a real potential to bring about positive change in the psychiatric system which has seemed endlessly able to bat off criticism. This despite the weak evidence base, unpopularity and poor track record of the psychiatric system. If physical health services in the NHS reported the same failure to innovate and the same longterm failure with so many conditions that psychiatric services do, it would be unlikely to have many defenders.
The rise of right wing neo-liberal politics, combined with the increasingly assertive expansion of the psychiatric system, have worked to stifle alternative ways of understanding and responding to distress. They have formed a powerful informal alliance that focuses on the individual and her or his responsibility for their problems and the assumption of things wrong in our heads. More and more social problems, from the failure of schools to engage pupils, to the isolation and impoverishment of older people at home and in residential institutions, are being routinely treated with the extension of diagnostic categories and the imposition of psychotropic drugs, instead of being recognised for what they are - social problems, as state supports are pulled back.
Mad Studies offers a real possibility to move on from present narrow, medicalised, individualising models of mental health intervention; to link us up in our different roles and standpoints; to give equal priority to user knowledge and experience, taking us beyond over-reliance on professional and medical authority and expertise. The key elements that are being identified with Mad Studies include that:
First, it is definitely divorcing us and itself from a simplistic biomedical/ genetic model, making possible a necessary rupture from it. It allows other understandings and disciplines to come into it, instead of solely medical dominance - sociology, anthropology, social work, cultural studies, feminist, queer, disability studies, history - everything.
Second is the value and emphasis it places on first person knowledge - centring on the first person knowledge of everyone, not just those psychiatrised. If you want to talk about yourself, then you have a psychiatric system. If physical health services in the NHS reported the same right to; it is ok to include yourself. This is positioned/situated research - you can’t just be talking from nowhere, as if you had no place in the proceedings - as it has been in psychiatry.
And finally of course Mad Studies treats survivors’ first hand knowledge with equality. But Mad Studies values, and has a place for, all our first-hand experiential knowledge; that’s why such a wide range of roles and standpoints can contribute equally to Mad Studies if they are happy to sign up to its core principles. It isn’t only us as survivors/mental health service users, but allies, professionals, researchers, loved ones, and so on.
This is a venture we can all work for together in alliance. So it includes the experiential knowledge of service users, the practice knowledge/wisdom of workers and the knowledge from those offering support, of family carers, as important bases for future research and development.
So long as we live under a system that puts profit before people, we will need to struggle to secure the resources required for real parity of esteem and to support people in mental distress to access the same rights and opportunities as non-disabled people. What we don’t want is more of the same. We need a system that is resourced properly and co-produced with people who have lived experience of the mental health system. That is the urgency of having a socialist government that puts human rights and equity for users and survivors of mental health services at the top of its health agenda.
Le Francois, B.A. Menzies, R. and Reaume, G. (editors), (2013), Mad Matters: A Critical Reader in Canadian Mad Studies, Toronto, Canada, Canadian Scholars Press.
» Mark Harrison is director of Social Action Solutions, and Senior Research Fellow in Social Action at the University of Suffolk.
» Peter Beresford is co-chair of Shaping Our Lives, the disabled people's and service users’ organisation and network, and Professor of Citizen Participation at the University of Essex.