|
User empowerment 1
The User/ Survivor Movement
(This is from the LOCN Mind Information Volunteer Training Course; Module 2 Private Study Materials)
One group in the country has fewer rights than the rest of us. No one listens to what they say, they are mocked in harsh, ugly language and some can't even vote. They can be discriminated against at work and locked up even when they have committed no crime. Comedians joke about them, headline writers demonise them and now the Government is set to erode their liberty yet further. They are the mentally ill, and their anger is growing - driving what could become Britain's next great movement for civil rights. [1]
Politicising oneself by joining with other survivors in political actions is an excellent antidote to the powerlessness that psychiatry induces in its subjects. Becoming active in the struggle against psychiatry (and other forms of injustice)... is a good alternative to the helplessness psychiatry encourages. [2] (Jeffrey Masson 1989)
The 'struggle against psychiatry' that Jeffrey Masson describes has a long history. As long as there have been psychiatric institutions there has been a movement against the injustices suffered within them.
In 1620 the House of Lords received the 'Petition of the Poor Distracted People in the House of Bedlam' a complaint against the inhumane treatment of the Bedlam Asylum inmates. They were forced to 'entertain' the public in exchange for food and clothing and were frequently shackled and subjected to other forms of physical 'treatment' and restraint. The Alleged Lunatics' Friends Society, a lobbying and campaigning organisation, was formed by 'ex-patients' in 1845 and is credited with extricating the poet John Clare from a Victorian asylum - possibly one of the first examples of peer advocacy. [3] The periodic riots in Edwardian and Victorian asylums have been described as some of the first instances of direct action against the injustice and oppression of the psychiatric system. [4]
The organised mental health service user/survivor movement that we know today is rooted in the civil and welfare rights movements of the 1960s, emerging alongside the Gay Liberation and Black Civil Rights movements of that time. Living in a climate of irreverence and radicalism, many (including mental health service users) began to question the received wisdom of the time. Many were no longer prepared to accept the labels and restrictions that psychiatry placed on them. What developed was a backlash against the dominant 'medical' or 'illness' model of psychiatry. The 'anti-psychiatry' movement was supported by the writing and thinking of several well-known clinicians and academics of the time - most notably R.D. Laing. Laing, a psychiatrist himself, was a constant critic of orthodox psychiatry, which he regarded as reductive and controlling in its approach:
...psychiatry can so easily be a technique of brain-washing, of inducing socially acceptable behaviour by (preferably) non-injurious torture. [5]
The early user/survivor movement was not the organised force that it is today but from it emerged local, national and international groups, some of which have grown to become a considerable force for change.
What is the user/survivor movement?
The user/survivor movement is characteristically diverse and almost impossible to define. Many mental health service users/ survivors express their anger and distress at having been defined by the psychiatric system and by the wider society. Many have experienced the stigma of a diagnostic label, like 'schizophrenic' 'manic' or 'neurotic' and the hurt of being labelled 'loony', 'nutter' or 'mental' by society at large. It is perhaps inevitable then that language has a particular relevance and importance for many users/survivors.
Users, Survivors or Pioneers?
It is clear that mental health service users/survivors do not want to be seen as 'nutters' nor do they want to be seen only in terms of their diagnosis but how they do wish to be defined is a more complex issue.
You will no doubt have noticed that the term 'user/survivor' has been used throughout this text. This term is used as a 'shorthand' to describe the movement but does not reflect the range of ways that mental health service users/survivors choose to define themselves and their experiences of the psychiatric system. The importance of individual experience and choice is vital to users and survivors, many of whom have found psychiatry to be totally disempowering and discriminatory. For many, defining oneself in one's own way is just one part of regaining some of the power and independence that the experience of psychiatry has taken away. Here are just a few of the terms that are sometimes used:
'mental health service consumer', 'psychiatric survivor', 'pioneer',
'mental health service user', 'survivor of mental distress',
'member of a day centre/service etc.'
As Mind's policy on User Involvement states,
People should be able to define themselves using words which are acceptable to them.
What is the user/survivor perspective?
As already noted the user/survivor movement is diverse - grounded on a respect for individual experience and opinion. User groups may work from different standpoints and toward different objectives but most are linked by a few fundamental beliefs. For most a negative experience of psychiatry is a unifying force.
Often the user/survivor movement is defined as being 'anti-psychiatry' or opposed to the 'medical model' of mental health (that is viewing mental distress as an illness with an organic cause rather than as the result of social and/or psychological influences). While there may be a general opposition to current psychiatric practice, a range of viewpoints are encompassed within this. For example, some people believe that the current methods of diagnosis are based on false assumptions and do not take into account the broad range of human experience (this is covered in more detail in Module 3). Others believe that it is not so much the 'medical model' of diagnosis that is the problem but rather the approach that it can lead to - i.e. a focus on physical treatments such as drugs and ECT, rather than a more holistic approach.
Linked to this is another fundamental of the user movement - a belief in the importance of choice. Much user/survivor action has been focused on the importance of real choice within the mental health system. Real choice means the provision of a full range of appropriate services, which reflect the diversity of the population. This includes a move away from a reductive approach to the care and treatment of mental distress (which often centres on physical treatments) and the provision of accessible information and advocacy to all service users.
User involvement in developing services
The only way to create the kind of services that users want to see is to involve them in the process of service development.
The National Service Framework for Mental Health published in September 1999, outlines national standards for the care and treatment of mental health problems. It states:
All mental health services must be planned and implemented in partnership with local communities and involve service users and carers. If services are to match the needs of black and minority ethnic communities and reduce the present inequities, this principle is especially important. [6]
User involvement really 'took off' in the 1990s and the debate now is more about how, not whether, it should take place. Mind wants to see a true commitment to user consultation at every level,
….it is no good deciding to build an acute unit and then consulting on the colour of the furnishings. [7]
First and foremost this means making the consultation process truly accessible to mental health service users/ survivors and acknowledging the true value of the contribution they can make.
Mind Link
Mind Link is a group of more than 1000 people with experience of mental distress. It gives a voice to users and past users of mental health services; ensuring that they have a direct input into shaping Mind's policies and campaigns. Mind Link operates primarily within Mind but is also part of the broader user movement and has links with other user groups and some statutory bodies.
...some users views about their experiences
I am very interested in alternative treatments in overcoming anxiety and depression...I feel users should 'come out' and try to educate the public to reduce stigma
I experienced a breakdown 4 years ago having worked in Social Services for 10 years. I was retired on ill health grounds with a good settlement and devastated self esteem
I want 'user friendly' mental health services, to eliminate the stigma associated with mental health problems and to educate the general public about these matters. I work as a user consultant for the training of professionals and I belong to various national user groups.
I am currently suffering from depression as a result of being abused as a child and recovering from compulsive eating disorder... I'm interested in doing research on how people have survived the mental health system.
I have been imprisoned since 1976 for attacking psychiatric malpractice and served far longer than war criminals, rapists and murderers. I'm interested in diverting psychiatry into areas where it may be appreciated and out of areas where it is a violation of human rights and dignity.
I am now 37 and was diagnosed as suffering form schizophrenia at 26... My work as an economic analyst was terminated in 1985.
The importance of the user/ survivor movement might be summed up like this:
...people with a mental illness diagnosis have a contribution to make because of not in spite of their life experiences…[8]
[1] Freedland, J. (1998) Out of the Bin and Glad to be Mad. The Guardian, 21/01/98, p.17
[2] Masson, J. Against Therapy, 1989
[3] Conlon, E., Peer Advocacy 1994
[4] Coleman, R. speaking at an anti-ECT conference in Wales 1998
[5] Laing, R.D., The Politics of Experience and The Bird of Paradise 1967
[6] Modern Standards and Service Models - Mental Health, Dept. of Health 09/99, pg. 17
[7] Sayce, L., Mind's Policy on User Involvement 1993
[8] Campbell,P., The Service User/ Survivor Movement from This is Madness (1999) pg.200
Next section of the User empowerment factsheet
|