Bob Goupillot writes about organising against discrimination, oppression and exploitation, and how this affected the Movement for Recovery in Mental Health.
A BRIEF HISTORY AND THE CONTEXT FOR RECOVERY IN MENTAL HEALTH
The Recovery movement has several roots these include
- The various historical movements for greater Civil rights.
- The evidence from experts by experience those who have survived mental illness.
- Evidence from non-western cultures.
1) Movements for increased Civil Rights
One of the lessons from history appears to be that it is only when people who are discriminated against, oppressed or exploited organise themselves and raise their own demands that real material improvements in their situation are brought about.
The classic example is the struggle for black civil rights in America which developed its own leaders in Malcolm X, Martin Luther King, Rosa Parks Angela Davies and organisations like the Civil Rights Movement and the more militant Black Panthers. These in turn could trace their links back to the struggle against Negro slavery. Similarly, in the UK at least, votes for women were only gained after a militant struggle by the suffragettes.
A related movement and one with interesting parallels with the mental illness survivor’s movement is women’s struggle to have control over pregnancy, childbirth and mothering. These processes have become medicalised and under the control of (usually male) experts, so that pregnancy has become more like an illness The struggle has been over who defines the nature of the process, who controls it and the ability of mothers and mothers-to-be to exert real control. As in responses to mental illness the chances of a happy outcome have been improved when the actual lived experiences of the people involved have been validated, when the focus has been on them being listened to, expressing real choices, and being treated with dignity and respect.
Another example is the Gay Liberation Front, an out and proud movement, which grew out of the June 1969 Stonewall riots in America.
“Gay Liberation” echoed “Women’s Liberation”; the Gay Liberation Front consciously took its name from the National Liberation fronts of Vietnam and Algeria; and the slogan “Gay Power”…..was inspired by Black Power.
(from Gay Liberation-Wikipedia)
In December 1969 the Gay Liberation Front voted a cash donation to the Black Panthers
And in August 1970,
Huey Newton, the leader of the Black Panthers, publicly expressed his support for Gay Liberation, contrary to previous statements by the Black Panthers
(from Gay Liberation-Wikipedia)
This shows how different civil rights movements were connected to and inspired by each other. More recently, in the UK, Mad Pride, was inspired by the 1997 Gay Pride festival in London. Interestingly Mad Pride day is consciously celebrated on or around 14th July, Bastille Day, which commemorates the storming of this Parisian prison in 1789 during the French Revolution – a universal symbol of liberation.
2) Experts by Experience: Recovery Stories
Historically, people with mental illness have suffered discrimination and social exclusion and had their civil rights curtailed. The general medical, and therefore social, consensus in western society was that mental illness in general was lifelong and degenerative with no expectation of recovery. Hence, someone diagnosed with say, schizophrenia, was seen by mental health professionals as set on a uniformly downwardly spiralling course.
So for example, Emil Kraepelin, a founder of modern psychiatry, working at the end of the 19th and beginning of the 20th Centuries coined the term “dementia praecox,” or premature dementia to describe what later was called schizophrenia. Dementia praecox was thought to have a genetic basis and the term indicated the belief that the sufferer was doomed to an early and irreversible mental decline. Subsequent research and experience showed that this was not the case and the term was dropped.
Nevertheless, the debilitating effects of such perceptions of mental illness persisted. Sufferers were stigmatised as unable to take control over their own lives and ultimately as dangerous, increasing the tendency for negative public and public service responses. The internalisation of stigma by the sufferers themselves and the alleged hopelessness of their condition promoted a kind of ‘learned helplessness’ for all concerned.
However, for at least the last 40 years individuals and user groups have challenged this consensus by organising themselves, campaigning for improved services and greater civil rights and telling their stories. Increasingly these survivors of mental illness and the mental health system are valued as experts by experience with a positive contribution to make in developing and delivering services aimed at improving mental health and emotional wellbeing. This is most clearly shown in the development of Peer Support services which utilises peoples experience of mental illness to help others undergoing similar experiences. It is important to note that less formal peer support has always been an important element in recovering and maintaining wellness. It is vitally important that evidence based practice gives proper weight to people’s real stories and actual lived experience. Otherwise the ‘evidence’ is selective, biased, unbalanced and therefore unscientific.
Here in Scotland the Scottish Recovery Network’s Narrative Research project and their publication Journeys of Recovery gathered people’s stories of their journey towards recovery and what has helped and what has hindered them along the way. The fruit of this experience has been an increased awareness of the importance of people learning to self-manage their well being. Processes and tools such as MAP, PATH and in particular Wellness Recovery Action Planning (WRAP -which is derived from the self help strategies of people who have experienced mental illness) are being increasingly used in recovery focussed practice. A further insight has been that individual professionals, carers and organisations that provide services may all need to enter their own version of the recovery process in order to adapt and thrive in this new recovery environment.
- Non westernised Countries
In westernised countries rates of mental illness appear to increasing. The main cause of this seems to be increased pollution degrading the immune system, the increased pace of life and the resulting stresses.
A World Health Organisation (WHO) report (Leff et al, 1992) which compared recovery rates in Europe, USA, India and Africa found that recovery rates from schizophrenia were significantly higher in India and Africa than they were in the USA and Europe. A number of possible explanations for this finding have been put forward;
- A key difference is the hope and expectation of recovery. A consistent cross cultural research finding has been that being surrounded by significant others who believe that you will recover significantly enhances the likelihood that you will recover. In non-western societies it may be assumed that an episode of mental illness is something that the person will pass through and recover from. It is not a life sentence.
- Another important factor is that sufferers tend to remain in their own community and they are allowed to continue to make a contribution. They are not isolated from their friends and family and rendered economically and socially inactive.
- The community takes responsibility and asks is there anything that we have done or not done that has brought this about? The problem is not conceptualised as located in the person like a disease but is rooted in the person’s life history including their present social networks.
- It is also possible that societies with strong spiritual beliefs may support recovery
In the context of the above it may be no accident that much pioneering work on Recovery has originated in New Zealand,-where there has been a crucial input in to the development of recovery focussed services from the Maori community
Here in Scotland the Scottish Executive has taken heed of some of this history and these experiences and woven them into the national programme for improving mental health and wellbeing. This has 4 key aims;
1. Raise awareness
2. Reduce suicide
3. Challenge stigma and discrimination
4. Promote and Support Recovery
Clinical, Social and Personal Recovery
There continues to be a debate about what is meant by recovery from mental illness and as this involves a personal journey-and therefore varies from person to person whilst exhibiting strong common themes-this is no bad thing.
The well known recovery trainer and psychiatric survivor, Ron Coleman usefully outlines 3 different understandings of recovery from mental illness, Clinical, Social and Personal
This typically signifies the absence, eradication, suppression or control of symptoms like, hallucinations, distressing thoughts, hearing voices. This has to be a stable condition and is assumed to be an observable result or effect of treatment
This is usually an external or professional viewpoint and so may fall into error. For example a person may stop reporting that they hear voices or other symptoms because in the past this has led to an increase in medication or hospitalisation and they would prefer to avoid that. They may thus be declared ‘Recovered’ when the treatment has in fact been ineffective. A somewhat stark analogy is that of the double amputee, where the person wakes up after an operation (after a serious accident say) to learn that they have had both legs removed. They are likely to be devastated and may feel that their life is over. However, from the surgeon’s perspective the operation may have been a complete success and the patient in recovery.
This is recovery defined as conforming to social norms ‘Living like your neighbours’. Indicators are having your own home, employment, stable relationships and low social disruption (Warner, 1994). This ignores the fact that things like housing and employment can be affected by forces outwith our control, in particular the stigmatisation of those who have experienced mental illness. Hence some of the barriers to social recovery are the product of other people’s behaviour and beliefs. Further it is possible to have a nice house; a job and a partner i.e. appear to be socially successful and well adjusted whilst in reality being stressed out and miserable.
Some definitions of social recovery require service users to be more normal than normal. This has led to the accusation that psychiatry is a form of social control, underpinned by a narrow, conservative view of human nature and what constitutes ‘normal’ or acceptable behaviour
The key aspect of the two definitions above is that they are defined by others. Recovery, properly understood is personal and subjective. It involves a self definition. This in turn means that mental health professionals must be ready to give up power over others and see their role as enabling service users to reclaim their own personal power. They should be ‘on tap not on top’.
I’d like to finish with a quote that captures the living spirit of the recovery process,
The values of Recovery aren’t new. It is not a “model”. Recovery means different things to different people because people are different. No-one has the “copyright” on Recovery. We are all experts on our own Recovery – identifying how we want our life to be and who/what we need to help us get there. FOR ME IT IS ABOUT PEOPLE, LIFE, REAL CHOICES & HOPE. Meeting people on their own recovery journeys, making real friendships, learning more about who I am and the general “weeble-ness”(the ability to bounce back) of people to live through their experiences, thrive & enjoy life (the power of people) continues to help my recovery, stay hopeful, share the good stuff and really enjoy what I do. The road goes ever on………
Quote from Dorry McKenzie, Service User, Survivor and Recovery Trainer
Bibliography and Further Reading
Piers Allott et al, Discovering hope for recovery from a British perspective: A review of a selection of recovery literature, implications for practice and systems change.
In Lurie, S., McCubbin M., and Dallaire, B (Eds) (2003) International innovations in community mental health (special issue). Canadian Journal of Community Mental Health, 21 (3)
David Carter, (2004), Stonewall: The Riots that Sparked the Gay Revolution
Eldridge Cleaver, (1967) Soul on Ice (the autobiography of a leading Black Panther) New York:Mcgraw-Hill
Ron Coleman, Recovery an Alien Concept, published by P&P Press and also www.workingtorecovery.co.uk for lots more interesting material
Leff et al (1992), The International Pilot Study of Schizophrenia: five-year follow-up findings in Psychological Medicine, 22, pp. 131 – 145
Bobby Seale, (1970) Seize the Time: the Story of the Black Panther Party and Huey P. Newton. Arrow Books/Black Classic Publications.
Scottish Recovery Network (www.scottishrecovery.net) a great source of literature, research, forthcoming recovery events etc
Bob Goupillot (2008 revised August 2017)