Survivors History archive of "A mental health service users' conference with historians -The Report"

Originally published in Celebrating our History - Valuing ourselves

Reproduced with permission of the Survivors History Group

A mental health service users' conference with historians -The Report

Part of the ongoing work of the Survivors History Group to record and document the history of the survivors' movement. Thursday 29.5.2008

Our day of meetings with historians and a journalist, on what survivor history is for, were held crowded into the office of Anne Beales and Mandy Chainey (both absent in the new world) and continued in a pubrestaurant on Old Street.

Conversations began before the meetings and reflections continued afterwards.

Present (in rough order of arrival) were Helen Spandler (Manchester historian), Andrew Roberts (Hackney), Peter Campbell (London), Ian Ray-Todd (Hackney), Phil Ruthen (Brockley), Mark Cresswell (Durham historian), Catherine Jackson (journalist), Frank Bangay (Hackney), Sophie Mirrel Moakes (Hackney), Clare Ockwell (Sussex), Joan Hughes (Hackney), Roger and Felicity Lansdowne (Hackney).

Different points of view

The emphasis was on the rich rainbow colours of the users' movement and the need to record the different perspectives on what has been done. Survivors History needs its manifesto, but should not have a party line on history. There were a lot of challenges, but it was contained. No blood was spilt and no one had tantrums. We remained good friends. Key features picked out by Phil Ruthen were the sociability of the meeting, the openness of discussion, and the emphasis on establishing the facts of our history and considering them from different survivor points of view.

Getting the facts right

It is important that different views of our history can co-exist - We can live with multiple histories and versions. However, Helen Spandler (left) comments, we can get key dates, facts, and events right, as far as possible. Using the Survivors History Timeline and the Mental Health History Timeline seem crucial here.

Why the history group started and where it might go

Peter Campbell outlined our early history. The group formed as a response to a meeting 'What are we going to do about the history of the mental health service user movement?' called by Thurstine Basset and Peter Lindley on 30.11.2004 at the Sainsbury Centre for Mental Health. About twenty people attended, including a number of leading figures in the survivor movement.

This meeting was memorable because it centred on showing films. These included one on the history of psychiatry and one that Thurstine Bassett made of a tape slide presentation by members of Glasgow Link Clubs to the Mind Annual Conference in 1984. This user group had compiled a series of photographs and drawings to illustrate tape recordings of their stories and what they thought was wrong with the Scottish mental health system. They were determined to see changes for the better that included respect for patients. Link club members were amongst the founders of Survivors Speak Out in the winter of 1985/1986, and they used the presentation at many subsequent workshops.

A lot of interest was generated by the films, with many potential ideas for collecting together and somehow preserving the history - and also making it accessible. Various people undertook to look through their papers and search through cupboards and lofts to see what they had got.

One of the user celebrities who attended was Anne Beales, who had just been appointed as Together's first "Director of Service-user Involvement". Anne offered Together's Board Room as the venue for an inaugural meeting, and has remained active in the group ever since.

Other celebrity survivors who were active in getting the group launched, and have remained involved, include Colin Gell, a founder of the Nottingham Advocacy Group in 1986; Terry Simpson (Leeds), active in the United Kingdom Advocacy Network from 1993, who preserves its archives; Peter Munn, a pioneer of groups in Wales; and Peter Beresford, Professor of Social Policy at Brunel University.

Our inaugural meeting, on Thursday 21.4.2005, was also memorable. The founder members brought items from their own archives to show. Exhibits included Tshirts, badges, videos, books and posters from many organisations over many years. At this point we learnt a painful lesson. No one recorded what was brought and that record is lost. When the group launched its full manifesto, in January 2006, the final commitment was to "be conscious that we are making history as we work and seek to record the activities of the group."

Peter Campbell spoke of the need to bring more people into the history group and into history activities. He also said we should discuss the value of history to survivor/users, both to those who take an interest and those who may not (at present) think it relevant.

Peter also thought we need to reflect on what we want to do. What direction do we want to go in? Do we want to create a physical archive like the National Disability Arts Collection? Or do we want to concentrate on a web history and web archive? Or do we want to concentrate on writing history in a more conventional sense?

Value of History

We heard about the excitement of a group of younger user activists at Together, about a year ago, when they were introduced to the histories on the Survivors History Timeline and the Mental Health History Timeline. Working in pairs, they selected five areas to pursue for their own further research: world war one soldiers being shot for cowardly behaviour - the alleged link between insanity and sexually transmitted diseases - the Nazi party eliminating people deemed to be mentally ill - military and naval asylums - an Archers radio programme where a character was treated for mental illness in 1954. Some of these activists have established and maintained contacts with the history group.

Clare Ockwell was a founder of The Capital Project Trust (Clients and Professionals in Training and Learning). This is a West Sussex user-led project, set up in 1997, to train users in service user focused training, consultancy and research. Being part of the history group and learning about our heritage had made a lot of sense of her own life and experiences. Clare told us how she had been using material on the survivor movement history in her teaching within CAPITAL and the interest that has aroused. One person who took part in one of Clare's groups wrote to the history group with information about the users' movement in New Zealand, Ireland and elsewhere that has added valuable new dimensions to our web history.

We hear from other people about the inspiration of having heard Peter Campbell, or others, speak about the significance of history at conferences. One of these, Lizzie Maitland, is a member of a group who have written a booklet and are touring Leicestershire and Rutland with a history exhibition. Their book begins

"A user group was started specifically at the beginning of the 21st Century by Peter Campbell in London to write the history of user groups and the effect they have had on the treatment of mental health. In 2004 the Rutland Healing Group, some users, past-users and carers, decided to campaign for freedom and a voice in their own mental health treatment. This led to the start of this Heritage Mental Health project, The Progress In Our Age Exhibition, the book Our Local Heritage of Mental Health and the two pamphlets of Life-Stories."

We need to reflect on what we are doing in creating our own history. We need to listen to those who are inspired by the history and to learn from them what they relate to and how it motivates them to action. If we can hear what is said, it will help us to tell our stories in ways that inspire others.

Catherine Jackson asked Helen Spandler why she was involved with the group. Helen said that she thought the remit of the group was really important (survivors developing their own histories) and wanted to find ways to support this. She also wanted to contribute to the emerging histories of the movement, as well as potentially developing collaborative projects with the group. She has been discussing with Anne Plumb and others a history of the survivors' movement in the north west of England, where she is based.

Conversations and incidents

Recording our history provides material for many conversations, most of which we will not hear about.

But we need to hear about all the different groups and events that are the substance of the story. The members active at the centre of the history group aim to be open to, and interactive with, others, so as to record what is remembered and archived about the movement. The website is an important tool for this. The web history is created from the material that is sent into us by its readers.

We also seek, through exhibitions and post, to communicate with those who do not use the web. In this way, the conversations become richer as more and more incidents are recorded as part of our history.

Knowing what has been achieved

It was suggested that one value of history is to know what has been achieved. This led on to a discussion about what had been achieved.

People listen - do we want to speak?

It was suggested that, in the past, people would not listen to users, but that now they will.

Andrew thought there was another side to this. There was a period when groups like PROMPT did not want to discuss issues with the people they saw as the enemy. At the same time, the users working through Hackney Workers Educational Association were setting up user controlled forums in which users, psychiatrists, anti- psychiatrists and others, could debate issues on equal terms. A big step forward was the Mind conference to which CAPO (inheritor of PROMPT) went. We (rightly) put a lot of emphasis on the fact that English users' groups were not invited, but we should also remember that, previously, some had not wanted to go. Frank Bangay, later, commented on and corrected Andrew's statement.

British Network of Alternatives to Psychiatry

Peter Campbell spoke about the importance of the British Network of Alternatives to Psychiatry. In the 1980s, this brought radical survivors and radical professionals together. It included forceful characters like Shulamit Ramon and David Hill, who had both recently completed their Ph.D. theses (Shulamit in 1972). David was very important because of his trade union and political links. He got users into the Houses of Parliament and into conferences in Chesterfield organised around Tony Benn. These links were lost after David left.

Frank Bangay on PROMPT (Protection of the Rights of Mental Patients in Therapy), CAPO (Campaign Against Psychiatric Oppression) and Mad Pride Frank spoke about the history of the movement, including the first PROMPT meeting he went to. PROMPT (Protection of the Rights of Mental Patients in Therapy) was a small, but vocal campaign group started by Julian Barnet in the summer of 1976 to

"protect the rights of mental patients, and to form ourselves into one massive pressure group to lobby MPs, inform 'mental patients' about what really is going on, vis-a-vis the true nature of their 'treatments', to bring together all our experiences and to say with one voice 'Psychiatry belongs not in the realm of medicine - but more in the realm of politics'."

At some time, Julian Barnet joined forces with Eric Irwin. Prior to the national Mental Patients Union's formation in March 1973 Eric was one of the co-authors of a document called The Need for a Mental Patients' Union, known because of its cover as the Fish pamphlet. The first part of this argued that "psychiatry is one of the most subtle methods of repression in advanced Capitalist society". The second part set out what a union could do, and was built on by the Mental Patients Union, which otherwise disassociated itself from the Fish pamphlet. Eric always remained loyal to the ideas set out in the Fish pamphlet, which was eventually resurrected as parts of policy statements by PROMPT and CAPO.

Frank Bangay became a close friend and colleague of Eric and in 2000 AD it was Frank Bangay who suggested the Fish pamphlet be re-printed as part of Mad Pride's anthology.

By the time Frank joined PROMPT, most of the small group of members were patients. Frank said

"My first introduction to PROMPT came in 1979 when I found some PROMPT booklets in a bookshop either in Brixton or in Stratford. I might have found booklets in both places. My first PROMPT meeting in 1980 was a conference at Conway Hall."

PROMPT met first in Dulwich then in a pub in Farringdon called the Metropolitan.

Frank recalled the early days when he met Eric Irwin. Eric's deep bitterness and anger with services influenced both Eric and Frank's approach to activism. Frank changed a little when Eric died, as did the focus of his activism, as it adapted to a changing context.

Frank talked about the PROMPT/CAPO relationship with Mind

"When I first got involved with PROMPT, in 1980 The boss of national Mind, Tony Smythe, was very supportive of Electro Convulsive Therapy (ECT). I know this because I heard Tony Smythe speak. This of course made Mind the enemy - at the time. There was one occasion I remember when Mind held a fete at the Maudsley Hospital in south London. We went along with our petitions and campaigns. Then Julian Barnett grabbed the microphone and started saying 'come and get your free E.C.T. here'. Mind then phoned the police to have us moved from the premises."

"When the Italian experience came to England, a few years later, we went along. We had heard a lot about it and about the work of Franco Basaglia (1924-1980). However we were disappointed to find the meetings run by mental health professionals speaking on the patients' behalf. No patients from the centre seemed to be there to speak for themselves. This caused us to be a disruptive voice from the audience."

CAPO (Campaign Against Psychiatric Oppression) was formed out of PROMPT in March 1985. CAPO met in a pub called The Wheatsheaf on the Edgware Road.

In July 1985, Mind ran "Mental Health 2000", a World Federation for Mental Health conference, in Brighton. Apart from Glasgow Link, no users/survivors from Britain were invited. Eric Irwin, Barry Blazeby and Frank Bangay, from CAPO, attended, uninvited

"We set up a stall by the door to show that we mattered too. Following this, with a little persuasion, we got involved with the autumn 1985 annual Mind conference.

Here we ran a stall and gave a well received talk, Eric was on fine form. I also organised the poetry and music entertainments for the conference."

"In 1986 we again ran a workshop at the Mind conference. I organised some poetry and music entertainments for that conference as well. After this we did from time to time take part in Mind events."

"Our relationship with Mind was not always harmonious. I would argue that the friction took place on both sides. It did not just come from CAPO."

"I know we were quite critical of the move to work together with mental health professionals. But the mid 1980s was a time of change in the survivor movement. It can sometimes be hard to adjust to these changes."

Asylum A Magazine for Democratic Psychiatry started in the Spring of 1986. This sought to be "the freest possible non-partisan forum for anyone in any way involved in mental health work" The first issue had substantial material on or including the Campaign Against Psychiatric Oppression. The second included some opposite points of view. Frank made clear that the publication of alternative views was a problem for some members of CAPO. However, he persisted in providing material.

Towards the end of his life Eric Irwin spent a lot of time in the library at the Westminster Mind headquarters on the Harrow Road. It was here in the autumn of 1987 that he collapsed and was rushed to hospital. Eric died in St Joseph's Hospice, Hackney Just before Christmas 1987 . CAPO was continued until 1991 largely by Frank. After Eric's death it decided to affiliate to Survivors Speak Out.

Frank's tribute to Eric was published in Asylum Volume 3, No 1, Summer 1988. Julian Barnet, who was not too happy about the involvement in Mind, was also quite angry about the tribute appearing in Asylum. As Frank recalled

"He had his reasons as Professor Alec Jenner, the editor of Asylum, supported E.C.T. It was a difficult decision to make, but Eric did not altogether denounce Asylum, and at this point in time I felt the need to try and work with others. CAPO had become quite isolated. I will however say that there were times when I did enjoy working with Julian, and I respected the work he did as an activist and campaigner."

After Eric died. Frank's involvement with CAPO continued. He also got heavily involved with the London Alliance for Mental Health Action , or Lamha, which was formed in October 1987. Frank found that

"some of the younger activists in Lamha criticised me for not being radical enough".

"The days of PROMPT and CAPO are a long time ago now. Some of my memories from that period are quite painful. Other memories are easier to come to terms with.

I have been through a lot since then, so I obviously see things a bit different now. But I feel honored to have known and worked with Eric."

Mad Pride

For Frank, a major focus of activity in the 1990s continued to be poetry. On Monday 15.3.1999, a day of protest against compulsory community treatment orders ended with some poetry from Frank Bangay, and a minute's silence for people who had died in the mental health system. The day had been organised by the group called Reclaim Bedlam. This was formed in the autumn of 1997 to carry out street protests as a counter-culture to the celebration of 750 years of Bethlem Hospital. Its politics and tactics were inspired by the direct action of the anti-road building Reclaim the Streets movement.

Reclaim Bedlam organised its first cultural event ("gig") under the title Mad Pride on 20.6.1999. "Frank Bangay, veteran of Campaign Against Psychiatric Oppression and survivor poet read from his latest book" and "Ted Curtis - co-author of punk novel Seaton Point - did some assorted storytelling".

In June 2000, Ted Curtis, with Robert Dellar, Esther Leslie and Ben Watson, edited Mad Pride: A Celebration of Mad Culture, with a selection of twenty-four essays, including one by Frank, "An Uphill Struggle, But It's Been Worth It", telling the history of poetry and the survivors' movement. At Frank's suggestion, the 1973 Fish pamphlet was also included with the following introduction

"Originally published in 1974, this now rare document, also known as "The Fish Pamphlet", is said by some to mark the beginning of the organised `survivor movement' in Britain as it can be recognised today. The document is therefore of great historical and political importance. According to folklore, survivor activism was at the time particularly strong in West London, where a network of squats was established to provide `safe houses' for people in distress. The Mental Patients Union evolved during the 1970s into PROMPT (People for the Rights of Mental Patients in Treatment), which eventually turned into CAPO (Campaign Against Psychiatric Oppression) in the early 1980s. CAPO went on to issue a seminal manifesto which is still regarded by many as inspirational; however; we include instead here the original MPU document, which predated and provided a template for the CAPO manifesto. Although some of the following material and the language used may appear dated, it is a timely reminder of where it is that the `survivor movement' has come from, and sets the context for this book in more ways than one"

Phil Ruthen described Mad Pride as having an iconic and romantic status. Was it something of its time? - It has not all been recorded - people have memories of events they thought to be significant of which there appears to be no written record (yet). However, Mad Pride, like PROMPT and CAPO, have made a firm imprint on the minds of historians.

There was some discussion about why certain parts of the movement are remembered like this, and other parts overlooked, and it was suggested that involvement in "chipping away at services" is not very glamorous.

Mad Pride considered itself an art form. Ben Watson wrote "Madness is just Modern Art without the authoritarian intimidation". There was creative drama in both the protests and the culture, although the reality behind the drama became cruelly clear when Peter Shaughnessy killed himself on 14.12.2002.

We discussed the possibilities of people acting madness for whatever reason, and whether there are realities of mental distress that are marginalised by the drama?

Complexity of the history

There are different versions of survivor history. Eric Irwin's innovative version in Asylum, Volume 3, Number 3 (published after his death), sees the Mental Patients Union as a branch of "anti-psychiatry". A similar interpretation is given (briefly) in Mad Pride: A Celebration of Mad Culture (2000) and in an expanded version in Nick Crossley's and Helen Spandler's histories. Extended forward in this way, it draws a Need for a Mental Patients Union (Fish pamphlet) - PROMPT - Survivors Speak Out - Mad Pride trajectory. This presents the 1972/1973 pilot committee's Fish pamphlet as if it was the unions. That is, it analyses a pamphlet (and one not written by a mental patients' union) in place of analysing the real unions. Criticising this version, Andrew Roberts (who was not anti- psychiatry) argues against ignoring the activities of the real mental patients' unions, from Scotland down to Portsmouth, before and after 1973. He argues that histories developed from Eric's version tend to be London centred, not usually mentioning the Federation of Mental Patients Unions formed in Manchester, for example. The "branch of anti-psychiatry" argument leads to a focus on the activities of ex-patients and anti-psychiatric "allies". This means the unions and user groups inside hospital, from which much of the momentum came, are overlooked. The interpretation also omits the subsequent activities of user groups, (apart from the Campaign Against Psychiatric Atrocities), prior to the 1985 World Congress at Brighton.

Andrew wants us to use empirical, archival and other, materials to create a more complex version of different histories, including collective activities in hospitals, and action in Scotland, Manchester, Leeds, Bristol and east and south (as well as west) London. This more nuanced version must include, but not be pre-occupied with, the very political groups, and the anti-psychiatry tradition in the movement. It should make space for local groups of patients; for housing schemes run by patients; for women's groups and black and ethnic minority groups; for groups that include users and carers; for the development of self-advocacy by people with learning difficulties; for mental distress in old age activities; for grass roots activities as well as sensational media events; for activities that defend, reform or develop services, as well as for those that attack them, and for the quiet voices underneath the loud.

Radical or assimilated? Abolition or improvement? For or against psychiatry?

Is the movement more or less political now? Are there clear trends in our history or a complex interweaving of diverse themes? Catherine Jackson and Peter Campbell argued that there is now more focus on involvement and improving services and less radical antipsychiatry action. In the early 1980s (especially) some people wanted to abolish psychiatry or mental health services and, possibly, replace them with alternatives. Nowadays we hear less of this approach. The users' movement may have been assimilated.

Ian Ray-Todd spoke of his own experience of the movement in Hackney in the 1980s: People did not want to abolish services. If anyone talked about abolishing psychiatry it was in the context of challenging the hegemony of the medical model. People were critical and challenging of assumptions, but one aim was, nevertheless, to improve services. Clare Ockwell pointed out that this included the prospect of providing our own services. Ian and Andrew were both involved in efforts to secure funding for a "user controlled mental health centre for Hackney", for example .

Everyone seemed to agree that some trends could be identified - But we could not agree about what the trends are.

It always seemed to be more complex when Andrew described the history. He argued that there was a well documented involvement in improving services dating back, at least, to the late 1970s. He also pointed out that Mad Pride, which used direct action against psychiatry, claimed that it was "set to become the first great civil liberties movement of the new millenium" - that is the 21st century.

Participants also disagreed about their attitude to psychiatry and treatment. In describing the action around the 'celebration' of 300 years of Bedlam, Peter characterised the history of the mental health services as "300 years of oppression". Andrew said that his own experience of mental health services had mainly been positive.

Mark Cresswell spoke about the pressure to simplify and distort issues when writing in an academic context. He feels that a "good story" is wanted, rather than something that corresponds to the diversity and complexity of what actually happened. Academics, if 'left to their own devices' will always over-simplify, so we cannot rely on these histories alone

But simplicity had its champions. Ian cautioned us "lest we shoot the project in the foot". We should bear in mind Samuel Johnson's dictum that a degree of compromise with simplicity is essential to communicate crisply.

Hidden histories and neglected geographies.

We talked about the hidden histories of the movement, including the ones in people's memories and in archives preserved by individuals up and down the country.

The web project is seeking to list and explore these. Much may be lost if we do not succeed in this.

On the train back to Lancashire, Helen Spandler wondered whether we could also look into a funded Ph.D. studentship to research the hidden histories. This would be a good way to get someone, preferably a survivor researcher/historian, to spend three years researching the material.

Helen also noted the geographical dimension in our analysis which was highlighted by the contrast between the users' movement east and west London. Peter Campbell suggested research would be useful into why groups persisted in one form in some areas and mutated in others. Andrew Roberts thought the relevance of geography was even more salient in the absence of discussion of the movement outside London. Hardly any mention was made of Scotland, Lancashire, Yorkshire, Nottingham or Bristol, although the significance of what happened in each of these areas was as great as that of anything that happened in London.

Helen mentioned the work of Glasgow based social geographers in our field of study and will attempt to make contacts for us. libraries, but closed to the users outside the universities. We need ways of enabling users to write their own diverse stories, and we need ways to preserve and make those stories available to future generations. Helen also thinks that the group should be finding ways to record any inaccuracies in the official accounts and histories - so that they do not get repeated.

What kind of history?

Phil Ruthen has argued, at an earlier meeting, that the Survivors History Group works in many ways as a social science project with a historical perspective. He made reference to the "mutually beneficial" links we have made with university departments and individual researchers, with Survivors Poetry, and networks of survivors. Since the conference he has helped to establish a web forum in which survivors and academics can document and discuss history. Given this, Phil suggests that we should subscribe to the ethics and other norms of the social science disciplines

Frank Bangay having asked for clarification on what was meant by social science in this context, Ian Ray-Todd had submitted reflections on the "scientific" aspect of our ongoing research and the nature of the "history" that we are constructing. He thought we could discuss whether to seek standards of objectivity that would make our research acceptable to the social science community or whether to emphasise the "intrinsic worth" of what we do to the users and others who take part in constructing it, or who come across the end result. The two approaches might be combined.

Ian read from and elaborated his notes on this idea:

Thinking: Social Science: 'Normal' or New Paradigm?

* What does the Survivors History Group understand by social science? Are we content to treat social science and its standards, such as 'objectivity' and 'professionalism' as not worth contesting?

* What is the meaning of 'history'? How do we define it? How do we describe it? What are its implications?

Value addition

Must the fruits of the Survivors History Group's first substantive research project be sufficiently original to add real value - in the opinion of competent, respected, professional historians - to society's store of self-knowledge and understanding?

If not, would their intrinsic worth, to the people nevertheless subjectively interested in the fruits, be quite enough to justify the project? Ian thought it would, but also asked:

Would there then be a sufficient element of public (as distinct from user) benefit, educationally or otherwise, to secure funding? How much would this matter?

Ethics and methods

Ian challenged us to reflect quite carefully on "the most appropriate methods of realising the aim of an ethically sound, yet subjectively resonant, authentic mapping of the terrain which the various narratives testify". He laid down some principles:

* To separate opinion from fact, reasonably clearly, without becoming stylistically robotic, is virtuous.

* To think that the unalloyed facts speak for themselves is to indulge in a delusion.

* We cannot be inclusive if we use a jargon quite as impenetrable to ordinary folk as medieval clerical Latin.

* We should value the respect of academics but decline their services as amanuenses (people who write for people who cannot write for themselves).

Class

Mark Cresswell and Phil Ruthen had a brief discussion about class and mental health. They concluded that class is a dimension that has dropped out of recent research, however much they might lament its disappearance. This discussion concerned class as a socio-economic concept, as in research about working class mental health. A broader issue concerning Phil is the idea of users and ex-users of mental health services as a class (group, category) in government policy, and their eventual class-excluded position in socio- economic life. He has provided the group with a 6,000 word summary of his thesis on this.



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