SURVIVORS AND WELFARE
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A discussion based on
All Our Welfare - Towards participatory social policy
by Peter Beresford.
Based on a paper prepared by Andrew Roberts for a meeting of the Survivors History Group held Wednesday 29.3.2017. Looking at the book's argument that the theories and practice of welfare service-user involvement offer a blueprint for a new participatory social policy, with special reference to the survivor movement. |
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Peter says
"There have tended to be a limited range of relationships in public service. There has been the traditional paternalistc/'doing good' model from charity; the public service approach of the post-war welfare state and, more recently, the exchange relationship of the market which has been grafted on to it. But another model has also begun to emerge from service users and their organisations... based on equality, shared experience and understanding." (All Our Welfare page 306).I list below four models that Peter speaks about, (Charity/poor law - Socialist/welfare - Neo-liberal/market - Participatory developed by users) with rough dates for when they were most important. The models could be considered as aspects of Welfare that assume prominence at different times in history.
1. Charity model (paternalistic) and Poor Law model: A long history
2. Public Service Welfare State model (socialist): 1945 onwards
3. Welfare state modified by the market (neo-liberal): 1979 onwards
4. Participatory model. Developed by users from before 1978 when Judie Chamberlin published On Our Own. Patient-Controlled Alternatives to the Mental Health System
Experience as a basis for knowledge
Peter says "starting with and being guided by people's own direct
experience of services and support" "distinguishes the user-led approaches"
from the others. (All Our Welfare page 302).
Peter has argued (2003) that "The greater the distance between direct
experience and its interpretation, then the more likely resulting knowledge
is to be inaccurate, unreliable and distorted". If we re-write that as a
positive statement it could be "direct experience provides more accuracy
and reliability to our knowledge". This shows why Peter thinks user
experience has contributed so much.
Relevant history from the Survivor History Group's research
Peter relates this to the history of the user movements and I list here
some points in survivor history that he mentions, with some examples from
the Survivor History Group. We could use these to begin researching
survivor history in relation to Peter's arguments. Peter relates this
history to different fields, including
collective organisation,
peer
support,
patient controlled alternatives,
education and training
(pioneering and institutonalised), and
research. To which, I think, we should add
campaigning
| Peer support | In which we might include advocacy - or we could add representation |
In July 1969 Michael Barnett's radical manisfesto called on "true selves fighting grey goblins", from insde asylums and outside, to join a network of people to "help each other, help others who need help, not by DOING things to them, but by opening themselves to them". The networks formed in London, Leeds, Manchester, Birmingham and elsewhere took the names People Not Psychiatry and People Need People.
In September 1973's Spare Rib: "With a Little Help from Ourselves" by Carol Morrell said "Re-evaluation counselling - more often called co-counselling - is perhaps the most radical of the radical therapies: it is peer group therapy. This links together the three terms Peter uses for this thread in user history: Peer support, Co-counselling and Re-evaluation counselling.
Peter Cambell has written that, in the autumn of 1985 "the concept of self- advocacy was emerging... the invention of professionals, or at least the professional journals. In the space of eighteen months or so, it had taken over to such an extent that people in user groups - people like myself - began to accept that what we were doing was indeed 'self-advocacy'"
In September 1987 Jan Wallcraft went to the Edale Conference of Survivors Speak Out. She
" spent the first day curled up in my dormitory, crying with panic and loneliness, until I was found and given love and support. I went on to thoroughly enjoy the event; a coming together of a diverse group of self-advocates, activists, and people setting up patients' councils and tranx withdrawal groups. I began to realise that I was part of a movement that would enable me to be myself in a way that hadn't been possible before." (See Edale memories)
Black and ethnic minority survivors in England have found groups and networks invaluable in maintaining self respect in the face of the double disadvantage of mental distress and racial discrimination. See Patricia Chambers' legacy
Representation
In 1973 I (Andrew Roberts) helped to write these words:
The idea that patients should represent patients (individually or
collectively) was central to the idea of a union as described by
Thomas
Ritchie
for
SUMP (Scottish Union of Mental Patients) before the London based
union formed, although Tommy also considered the possibility of union
members who were not patients or ex-patients acting as advocates
Alternatives
1978 On Our Own. Patient-Controlled Alternatives to the Mental Health
System, published by Judi Chamberlin in the United States. Judi brought
copies to Europe in 1982 to share with survivors here (I still have my
copy) and it was republished from London in 1988. Peter begins chapter 14
with a description of the book as making "a compelling case for patient
controlled services; a real alternative to the institutions that destroy
the confident independence of so many. This is a work of great hope and
optimism".
I suppose the housing project that the Mental Patients Union ran in Hackney
and Wanstead (1974 - 1982) is an example of a "user controlled service"
developed by a "user led organisation" "alongside campaigning". The Hackney
experience will be explored in the walk organised from Sutton House on
Sunday 7.5.2017 as part of the Centerprise history projects.
Here is Joan Hughes' description of one of the houses:
"Without funding and relying completely on our own resources, we provided
services. We ran the Robin Farquharson House in Mayola Road for three
years. This was divided into individual rooms that were entirely under the
resident's control, but it also had an office which served as a crash pad
in emergencies. We often had people staying who were going through a crisis
and who were supported by other residents. We also helped and advised
people by telephone and letter, and there were many visitors from all over
the country as well as from abroad".
http://studymore.org.uk/mpu.htm#Hughes1970s
Before we ran this house, Social Services tended to argue that
accommodation for patents/ex-patients had to be run by social workers.
Afterwards, the house was quoted by local health service planners as
evidence that "community care" could be provided with minimal support.
(From one extreme to another?). Joan Hughes has pointed out that the
influence of the houses carried through to national planning of community
care because Hackney was treated, in the 1980s, as having special relevance
to planning as a borough with self-contained services. - See
http://studymore.org.uk/4_13_ta.htm#Hackney
Patient control could be facilitated within the mental health system. In
the 1980s, Chesterfield Community Centre included a North Derbyshire Mental
Health Services day centre for people becoming reestablished in the
community. This was run on increasingly democratic lines and in September
1985 members of the group ran a workshop at a MIND conference called
"Handing over control - it helps" The programme said "Members of the North
Derbyshire Mental Health Service Project, who took control over their
services, will look at what is involved in giving people the power to run
their own services, its benefits and its problems". Andrew Hughes recalls
an account of a role reversal session. He asked if they had actually given
injections to any of the psychiatrists taking part. "With what looked like
a very straight face, one of the presenters said, 'Oh no; they would never
let us do that'." In 1986 the Chesterfield group were very active in
establishing Survivors Speak Out. Ivy Buckland from the centre was the
first Survivors Speak Out Treasurer. Ernie Morris, another user, produced
the first Survivors Speak Out newsletter.
Education and Service User Trainers
In the 1970s survivors learnt that people would sometimes pay us a fee to
talk about our experiences. I have notes on three talks like this I did in
1976. Later, Hackney Workers Education Association enabled groups of
patients and ex-patients to run courses on mental health subjects. In 1985,
they advertised a nine week course "Your Mind in their Hands". tutored by
"Jim Read (Ex-mental patient)" was especially for people who had "ever been
a patient in a mental hospital - attended a day centre- had electric shock
treatment - taken tranquillisers or anti-depressants - felt you were going
mad". Questions like "who decides what 'mental illness' is" were asked and
participants learnt "from each other by sharing our own experiences through
paired listening, 'going round the group' and discussion."
Survivors in Manchester who had become experienced in presentations to
students in training and others established their own agency called DATA
(Distress Awareness Training Agency) in May 1988. The four members in 1988
were Andrew Hughes, Anne Plumb, Tony Riley and Helen Gibb. The relation
between survivors and those who hold power and money in society was
changing. Whereas SUMP organised as part of the social underground in
Hartwood Hospital, and Hackney MPU ran three houses without any funding,
DATA secured two grants from a fund launched in 1987 by the National
Council for Voluntary Organisations for "projects led and controlled by
disabled people and related to training or employment". The second grant,
with extra financial help from Rochdale Council, was used to organise a
"Training the Trainers" two day event in May 1993.
1980s onwards: Research
Research is discussed separately by Peter Beresford in chapter eleven and
focuses on research by people with physical impairments rather than
survivor research. Survivor research, such as that associated with Diana
Rose, Alison Faulkner and Jayasree Kalathil and her colleagues, has been
central to survivor history. Diana Rose outlined in the Autumn 2016 edition
of Asylum magazine how her work developed:
"In 1988, my local service-user group, "Camden Mental Health Consortium"
joined forces with ... "Good Practices in Mental Health ... to conduct one
of the first pieces of user-led research in mental health. We interviewed
people who had experience of acute wards both in the old asylum and in the
new community hospital provision, to find out how they compared. Most of
us, including me, had experience of both settings. So began my new identity
as user-researcher."
[The 23 page report was called Treated Well? A Code of Practice for
Psychiatric Hospitals. Tony Whitehead wrote in the British Journal of
Psychiatry Bulletin: "The Code of Practice, as distinct from many others,
is based on what patients, and ex-patients, think of the care they
received. The result is an excellent publication.]
Diana continues: "At the same time, work was being done in Bristol, and 10
years later there were two thriving programmes of user led research in
London NGOs". She references Faulkner, A and Layzell, S (2000) Strategies
for Living: A report of user-led research into people's strategies for
living with mental distress. London: Mental Health Foundation and Rose, D
(2001) Users' Voices: The perspectives of mental health service users on
community and hospital care. London: Sainsbury Centre for Mental Health.
Institutionalised involvement in research
April 1996 saw the first meeting of the "Standing Advisory Group on
Consumer Involvement in the NHS Research and Development Programme"
established by the Director of Research and Development in the Department
of Health. Later known as "Consumers in NHS Research". In 2001 the Group
widened its remit to cover public health and social care research
commissioned by the Policy Research Programme of the Department of Health.
It became INVOLVE in July 2003.
2000 Start of two year research leading to Creating Independent Futures:
An Evaluation of Services Led By Disabled People by Colin Barnes, Geof
Mercer, and Hannah Morgan. I think this was largely about services for
people with physical disabilities. Peter highlights it because it revealed
an "overwhelmingly positive" evaluation of user-led services "in contrast
to many people's experience of traditional mainstream services" (All Our
Welfare page 312)
2003 Peter Beresford's "It's Our Lives: A short theory of knowledge,
distance and experience" argues that experience gives a special dimension
to the authenticity of knowledge.
Institutionalised involvement in education.
"User involvement in professional education and learning progressed from
being an add-on offered by service users, to an integrated and essential
part of qualifying services". From 2003 User and carer involvement was
required in all aspects of social care (Social Work) education. (All Our
Welfare page 304). This was set out by the Minister of State in the booklet
Requirements for Social Work Training. Department of Health June 2002 and
came into force with the new Social Care degrees in 2003.
The work of users and others at Birmingham University would be a good area
to study with respect to how user activity contributed to this
institutionalisation. In Celebrating 100 Years of Social Work (2008), Ann
Davis wrote "At Birmingham established partnerships with service users and
carers and their organisations have grown to make this requirement a
reality. New students meet service users and carers alongside academic
staff and practitioners at admission interviews, fitness for practice
panels and in the classroom. These colleagues in social work education are
enriching student's learning experience and adding through publications and
papers to the knowledge base of social work.".
Peter adds: "Since then, requirements for user involvement in professional
education has extended to psychiatry, medicine and the wide range of health
related professions regulated by the Health and Care Professions Council"
(All Our Welfare page 304)
Rose Gardens
8.7.2016 Searching for a Rose Garden: challenging psychiatry,
fostering Mad
Studies - a collection of articles edited by Jasna Russo and Angela
Sweeney
published.
Jasna was the main organiser of the international conference
"Searching for a Rose Garden. Fostering Real Alternatives to Psychiatry" in
2011 and the main focus of the book, coming from the international
conference, is on "alternatives", following in the tradition of Judi
Chamberlin's Patient-Controlled Alternatives to the Mental Health System.
Campaigning
Campaigning against
PROMPT, the Preservation of the Rights of Patients in Therapy
was the user led organisation that focused on campaigning in the 1970s,
starting with its campaign against ECT and brain surgery.
Campaigning for visions
In his lecture, Peter Bersford discusses campaigning for a "participatory
model". He says: "In my book All Our Welfare, I looked at both
what more participatory social policy might look like" [his "vision for
future participatory welfare"] and ... how we might get it; that is to say
participatory ways of achieving such change".
He says that "there is lots of experience to draw on". In contrast to
"top down prescriptions that still dominate the
literature" there are "examples ... initiatives ... schemes ...,
pioneering projects, to draw on, where people as service users have
developed:
... Service user movements offer a model
for renewing the welfare state; building from the bottom up, providing the
infrastructure for us to get engaged in the process, through supporting
small community organisations - the real meaning of a bigger society."
Campaigning for change - example welfare benefits
As well as offering "a vision for future participatory welfare", survivor
organisations offer "a force for change to achieve it, building
popular support."
"Significantly we have seen such grassroots service user
organisations take the lead in successfully challenging current welfare
reform, with others - from big charities to the House of Lords - following
their lead, rather than vice versa."
Campaigning on benefits
In mid July 2010 a notice was circulated saying that the "surviving members
of the classic Mad-Pride line-up" (Simon Barnett, Robert Dellar, Debbie
McNamara and Mark Roberts) welcome all "mental health survivors" to a
"public meeting to discuss and plan direct action to oppose and condemn
government's attack on welfare benefits for those labelled mentally ill or
otherwise disabled" at Pogo Cafe, 76 Clarence Road, Hackney, on Saturday
24.7.2010. This led to the Mental Health Resistance Network. The Survivor
History Group's files are really deficient on the history of recent welfare
struggles. Can anyone help?
Andrew Roberts likes to hear from users:
"The Mental Patients Union will represent mental patients
wherever they require to be represented. We will fight to make what rights
of representation formally exist effective and secure rights of
representation wherever they do not exist. We will seek to inform patients
and ex-patients about their rights, minimal though they are e.g. the right
to appeal against compulsory detention in some circumstances). We will,
however, as representatives of our fellow mental patients, refuse to
bargain behind the backs of our members with the 'authorities'. We will
attempt to provide legal, social and advisory support for all mental
patients and ex-patients who ask the Union for help."
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