WELCOME TO ALL FELLOW CAMPAIGNERS for DISABILITY RIGHTS - a pan disability blog connecting my work with, EQUAL LIVES, the National Survivor User Network (NSUN) and the Survivor History Group.

Protest, Norwich Job Centre

Protest, Norwich Job Centre
Fatso Gets Militant!

Tuesday, 18 August 2015


More and more the members of the Survivor History network provide absorbing, thoughtful and innovative work. In the setting out of positive, challenging and outside-the-establishment ideas the Survivor History meetings quietly make history themselves. TOO QUIETLY! They should be better known and should receive deserved international attention.

The notes of the last meeting are posted below. It's well worth taking your time to read all of them. One more thing: Andrew is a hero.

Survivors History Newsletter Summer 2015

Angela Sweeney's new baby


The next London meeting of the Survivors History Group will be from
1pm to about 4.30pm on Wednesday 23.9.2015 at Together. We expect it
to include discussion of "Splitting in Two: Mad Pride and Punk Rock
Oblivion" led by Frank Bangay and Peter Campbell - Further discussion
of "Mental Health Service Users in Research: Critical Sociological
Perspectives", edited by Patsy Staddon. David Kessel's "Penny Poets
Manifesto" and the "Schizophrenic Salvation Network" introduced by
Peter Barham.

At the following meeting on Wednesday 25.11.2015 we could discuss
Helen Spandler, Jill Anderson and Bob Sapey's new collection of
articles on "Madness, distress and the politics of disablement". This
"explores the challenges of applying disability theory and policy,
including the social model of disability, to madness and distress."

See the website for links to all these issues:


PowerPoint Presentations are available on request (to Andrew Roberts)

"Psychiatric Patients and their Treatment at Bethlem Royal Hospital,
c.1930- 1983" Survivors' History Group, 27.5.2015 by Jennifer Walke


"Standing up to madness - A self-research" Survivors' History Group,
29.7.2015 by Nelsy

Nelsy's (fuller) web presentation is at


Following Nelsy's presentation we discussed the merits and
deficiencies of capitalism and other social systems. In the report
below I concentrate on reporting Nelsy's presentation, the discussion
of life story research and our examination of "Mental Health Service
Users in Research: Critical Sociological Perspectives", edited by
Patsy Staddon.

Andy Brooker is interested in setting up an email discussion of a
difference he perceives between the "service user movement" and the
"survivors movement". He suggests the service user movement is the
product of false consciousness. The theoretical background to this is
in a paper by  Ian Parker called "Critical Psychology and
Revolutionary Marxism" which is available at


If you would like to join Andy's email discussion group, let me know
and I will put you in contact.

At the end of April 2014 a group of people met in the House of Lords
in London to form a "Council for Evidence Based Psychiatry". They
believe that the heavy use of psychiatric medication is not evidence
based and they are holding a conference on 18.9.2015 in London called
"More Harm than Good: Confronting the Psychiatric Medication
Epidemic". This costs £85 to attend. See their website for more



Wednesday 29.7.2015 Survivors History Group 1pm Together

Present: Andy Brooker, Jenny Walke, Andrew Roberts, Peter Campbell,
Nelsy, David Kessel, Naheen Ali, Ellen Camroux, Peter McGeary
(Notes), Hagir Ahmed, Melanie Anne Ball (Cassel), Orla Cassidy, Carla
Mayes, Helene Regle (Club des peupliers, Paris), Ute Maria Kraemer,
David Turner.


The fancy word of the day was autoethnography, which means studying
society through your own life experiences. The afternoon was divided
into two on either side of a refreshments break.

1. A presentation of "Standing up to madness - An autobiography" by
Nelsy and discussion. Nelsy focused on the contrast between
"capitalist" and "natural" ways of relating to one another.

2. Followed by Peter Campbell's introduction to "Mental Health
Service Users in Research: Critical Sociological Perspectives",
edited by Patsy Staddon and discussion.


Nelsy used the expression "self identity shapes self-knowledge that
generates health". This reminds me of the Tower Hamlets African and
Caribbean Mental Health Organisation's argument for "health through

We need to question negative identities imposed on us by dominant

     "We must go back and reclaim our past so we can move
     forward; so we understand why and how we came to be who
     we are today.".

The article "User involvement from a bus to Clapham" argues that
"user movements start when we talk to one another on our own terms".
Formal survivor research is a development of the movement,
individually and collectively, to express the world as we experience
it. Following criticisms that the article was incomprehensible, I
have re-designed it and put it on the web at


Advice on making it easier to understand would be welcome.

Nelsy began by quoting a passage from Patsy Staddon in Chapter twelve
of "Mental Health Service Users in Research". Patsy says

     "For me, the most important aspect of this book is that
     it contextualises service user research, experiential
     knowledge and autoethnography. It also moves the
     narrative of service user experience and involvement
     forward, interrogating how identity shapes knowledge

This says in the technical language of social science much of what
Nelsy is saying. See our web for links to the meanings of the words


Nelsy says that

     "self-research has shaped my self-identity, generating my
     health" - "I agree with Patsy Staddon on the importance
     of mental health user's research, experiential knowledge
     and auto-ethnography... As an adventurous and lonely
     researcher, self-research has continuously enlightened me
     on self-knowledge. I now know that I have my own Natural
     Healthy Resources and the more I use them the better I
     feel. My self-knowledge process has revealed my real
     self-identity, and my awareness of my real identity has
     generated my health naturally."

Patsy Staddon, in 2009, wrote about "achieving authenticity in a
hostile environment". Nelsy sees it as part of a natural rather than
an artificial (which she calls capitalist) way of relating to one

Nelsys's world vision is illustrated in a diagram at


Follow the links at


for Patsy's presentation.

In "Mental Health Service Users in Research" the case for
autoethnography is made by Sarah Carr in chapter ten: "Individual
narratives and collective knowledge: capturing lesbian, gay and
bisexual service user experiences". The related case for experiential
knowledge is made by Peter Beresford and Kathy Boxall in chapter six
"Where do service users' knowledges sit in relation to professional
and academic understandings of knowledge?". Sarah Carr's own life
story illustrating social reality is available in "Lesbian and gay
perspectives on mental distress" in "SPN Paper Three: Start Making
Sense. Developing Social Models to understand and work with mental
distress", available at


It was as a result of telling this story that Sarah Carr discovered
she was an autoethnologist. Telling the story came first, calling it
autoethnology came later.


The Manifesto of the Survivors History Group -

http://studymore.org.uk/mpu.htm#History -

says that "The history of individuals is the root of the service
user/survivor movement" and speaks of the "diversity of service
users/survivors in all its expressions". Nelsy's self-research is one
view of herself and society. It is often outspoken and controversial.
She presents it as part of a conversation with other who may have
different views. From thinking about their responses, Nelsy learns.

Nelsy was born in Bogota, the capital of Colombia, South America in


She became a school teacher when she was eighteen (1968) and worked
for twenty years in state schools. In her mid-twenties she had a
daughter and chose to be a single mother rather than remaining
together with her irresponsible partner and having to parent him as

In 1988 Nelsy graduated and moved from Columbia to London, England.
She married an English man, Shortly after, she began teaching Spanish
privately and created a successful Latin American dance course for
beginners. Her sister helped her happily with the dance school until
June 1998 when Nelsy became a mental patient.

Nelsy received drugs and counselling. She became suicidal and lost
trust in professionals. Her experience led her to consider self
treatment in the form of research. She asked herself the basic
question "What did it mean to be "well"?"

On her web Nelsy says

"in the midst of my madness I took advantage of my circumstances
living among "mad" people, to make sense of my madness and of
psychiatric treatment. I have explored my madness over ten years and
it has gradually enabled me to unmask, understand and defeat my
"illness". I have proved to myself that madness and many other
concepts that we know as negative, have a very different, and above
all, a Healthy Meaning. Welcome to my new and Healthy World."

Nelsy showed us a diagram that shows how, after her breakdown (1998)
and self analysis, all of her life, including the politics, history
and education systems of both countries, was infused with emotion.


Reflecting and depicting her emotions was important for her:

     Colour is quite significant in my project. Every single
     colour has a traditional meaning but I have given a
     personal meaning to the colours that I have used: red
     means anger, yellow is fear, orange is obviously anger
     and fear, brown is confusion and green is my Healthy

From the first day of her breakdown in 1998 her life became quite a
bumpy and painful roller-coaster. However, Nelsy says that she has
been healthy without medication for 15 years due to self researches.
For ten years, since 2005, she has been much happier. Her husband
left her in January 2005 and this made her very angry. Nelsy had
already discovered that denial of anger is unhealthy and that open
communication is healthy. Five days after her husband left her
suddenly woke up at about three in the morning shaking, sweating and
breathing heavily. She wanted to go into the kitchen, grab two sharp
kitchen knives and stab her husband. Remembering that open and direct
communication helped her, she telephoned her husband. He sounded half
asleep, but with a furious shaking voice she told him she was glad he
was not with her because she would have killed him. Then she slammed
the phone down, went back to bed and I slept as if nothing had
happened. She says:

     "It took me only a few minutes to help myself effectively
     that day, and that was my last difficult fall. My life
     has been a much easier roller-coaster to ride ever

Nelsy's discoveries about her anger included the discovery of a
historic dimension. She became aware of this in the late 1990s when
she was on a course that gave her the opportunity to communicate with
others about her feelings. She was angry with the Spaniards for the
brutal invasion and destruction of her ancestral native culture. She
was angry with slavery. She was angry with the holocaust, and she was
angry with wars. When she expressed her feelings to other students
she was thanked by some who said they had similar historical anger
and had not dared express it.

Nelsy has studied the history of the world to help her understand
herself. She does so particularly through listening to radio and
watching television. She has paid particular attention to personal
stories, very particularly to those from "mental health sufferers".
"I seem to be angry with everyone, even with myself because I am not
perfect. I was violent against myself and against others as a teacher
and as a mother". The physical and psychological violence she
perceives is she says "the result of our historical incapacity to
effectively communicate". Understanding more of it has helped her
understand and to begin to relax about the Spanish "conquest" and all
violent historical events.

So, what does it mean to be well? Nelsy began to seek the power in
the world and little by little she found it inside herself. It was
about discovering, valuing and using her own capacities. Discovering
her own goodness made her realise she had a healthy power and
(equally important) taught her to acknowledge, value and respect
everyone else's goodness, everyone else's healthy power.

     "I now see goodness as a wonderful healthy power
     intrinsic to the human being that I could not sense,
     experience or enjoy because my anger and fear accumulated
     over time dominated and anaesthetised me. I think that
     goodness is so powerful, so perfectly designed and so
     fair, that as individuals we pay in life with our ill
     health for our life mistakes, self-abuse and abuse to


Peter Campbell introduced "Mental Health Service Users in Research:
Critical Sociological Perspectives", edited by Patsy Staddon, which
was published by Policy Press in July 2013. Several members have
copies of this and it is planned that they will introduce different
aspects of the book at some future meetings.

The book emerged from a monthly seminar series from January to June
in 2009 for which the Survivors History Group provided an exhibition.
Called "Researching in Mental Health - Sociological and Service
User/Survivor Perspectives", the series was convened by a
sociologist, Lydia Lewis, and three survivor researchers, Angela
Sweeney, Ruth Sayers and David Armes.


Peter Campbell described "Mental Health Service Users in Research as
an interesting book, but one which some would find it difficult to

Five chapters are written by survivors, and two are collaborations
between survivors and others, but four are by people who do not say
they have a history of distress and/or treatment:  chapter two is by
a psychiatrist/sociologist (Hugh Middleton), chapter four by health
researchers (Katherine Pollard and David Evans), chapter seven by the
non-survivor sociologist in the convening team (Lydia Lewis), and
chapter eleven by a social worker (Hugh McLaughlin). Katherine
Pollard and David Evans and Hugh McLaughlin were not part of the
seminar series but were invited to write chapters for the book. Hugh
McLaughlin's chapter is about "alternative futures for service user
involvement in research"). Sarah Carr was a survivor researcher who
did not take part in the seminar series but contributed chapter ten
dealing with autoethnology (see above) which played an important part
in our discussions. Some presentations from the series are not
represented in the book.

Peter read some of the blurb from the back as an introduction

     "The book aims to show the value but also the
     difficulties encountered in the application of 'insider
     knowledge' in service user research". It "considers ways
     of 'doing research' which bring multiple understandings
     together effectively, and explains the sociological use
     of autobiography and its relevance. It examines how our
     identity shapes the knowledge we produce, and asks why
     voices which challenge contemporary beliefs about health
     and the role of treatment are often silenced."


Peter drew on Hugh McLaughlin's chapter to discuss what involvement
means. INVOLVE is the government organisation that coordinates
collaborative research and Hugh McLaughlin outlines the three levels
of involvement it outlined in the early part of this century:

1. consultation when you are just asked for your views

2. collaboration when you are an active partner

3. control, where you lead the process.

See http://studymore.org.uk/sshglo.htm#Collaboration

Peter pointed out that not all survivor research is controlled by
survivors. The main interest in "Mental Health Service Users in
Research" is in collaborative research, where users and professionals
work together. The conference on which the book is based was itself a

"Mental Health Service Users in Research" looks at difficulties
with involving survivors in collaborative research

Peter was asked if collaboration is the same as co-production and
answered yes

In collaboration, parties meet as a flat hierarchy - There is equal
ownership  and parity of voices.  But Peter pointed out that there
are problems to this interpretation of what is happening.

At this point the discussion related to paradigms or models of what
is being talked about in collaboration.

See http://studymore.org.uk/glothi.htm#Paradigms

It was argued that in the paradigm of co-production, psychiatric
belief systems are rarely challenged. Participants are made aware
that the medical paradigm is the only way for them to share
experience. So the fear is that growing patient involvement will
produce a less critical participation and an enforced consensus
around a medical paradigm.

In 2001 Peter Campbell wrote an article for the "Psychiatric
Bulletin" in which he said:

     "On one hand professional organisations publicly
     encourage the greater involvement of service users (and
     carers) and acknowledge the legitimacy of direct
     experience, however, on the other there is resistance to
     non-expert views."

The article is called "The role of users of psychiatric services in
service development - influence not power", and it is available
online: See


There is debate about how users who get involved can achieve.
Recently there have been empirical studies of participation in an
official London group that invites people to collaborate in health
research and care. These have been conducted by Alicia Renedo and
Cicely Marston. They found that although "participatory spaces ...
constrain citizens' action", patients and public do not just fit into
what is provided, but negotiate alterations so that it fits closer to
what they want..

     "Participants draw on external resources to try to make
     participatory spaces more productive and collaborative,
     to connect and expand them."  "Grassroots acts of
     citizenship may open up unpredictable, but possibly more
     productive participatory 'spaces for change'"


Another kind of empirical study is reported by Steve Gillard, Kati
Turner and Marion Neffgen in chapter five of "Mental Health Service
Users in Research". The chapter is called "How does who we are shape
the knowledge we produce? Doing collaborative research about
personality disorders". It examined how an academic researcher, a
health researcher and a user researcher worked together at St
George's Medical School in south London and concluded that a dialogue
between different perspectives produced new understandings that have
practical applications. There is an attempt to summarise
collaborative research at St George's at


Alicia Renedo and Cicely Marston draw attention to how selective
collaborative work tends to be. The professionals usually control the
selection of users and the results are discriminatory:

     "It was not an average patient or member of the public
     who took part: Twenty two people were interviewed:
     "almost all were white, educated, and had professional
     backgrounds". Thirteen were retired and the mean age was
     65 years. This was also the typical age. Codes of conduct
     included "wearing a suit" "There was little evidence of
     involves coming from 'hard to reach' groups, although in
     two cases, interviewees' first language was not English"


Jayasree Kalathil challenges the concept of Hard to reach in chapter
nine of "Mental Health Service Users in Research" called "'Hard to
reach'? Racialised groups and mental health service user
involvement". She argues that groups unrepresented in official spaces
are absent partly because the official spaces do not want to adapt to
the ideas the groups use, and partly because the groups do not want
to change how they think and what they do in order to fit the
official spaces. This is summed up beautifully in the title of a
report that Jayasree and her colleagues produced called "Dancing to
Our Own Tunes"


Whose tune will we dance to? What are the advantages and
disadvantages of different dances moving together? Do we really get a
better dance, or is our dance suppressed whilst we are forced to
dance the official dance? Can creative interventions force the
official dancers to acknowledge our rhythm? Should we be engaging in
the dance of the Tiger (SIMBA)? Is it time to let the Tiger roar?:


Angela Sweeney's new baby

Angela Sweeney wrote a useful introduction to "Mental Health Service
Users in Research" which Ute Maria Kraemer spoke about. Before she
did we congratulated Angela on giving birth to our youngest member,
Hannah, in July and noted that mothercare is being shared with
Hannah's older sister, Jessie. Everything is as it should be.


Angela Sweeney (p.6) says

     "Survivor research then is a medium through which we
     represent ourselves and our own voices, and generate our
     own knowledge.  Many of the chapters in this book are
     testament to the power of exploring social phenomena
     through direct personal experience.  For instance, Patsy
     Staddon draws on personal experiences, primary research
     with women who use alcohol, and sociological writings to
     consider the development of a social model of alcohol use
     that directly challenges biomedical models of alcoholism
     and addiction."

Silencing our voices

David Pilgrim and Anne Rogers (1999) A Sociology of Mental Health and
Illness, outlines four main ways in which survivors' voices are

1. Survivors' views are disregarded where they do not coincide with
professionals' views.

2. Survivors are seen as consistently irrational and therefore unable
to give valid views.

3. Professionals assume that service users, survivors and relatives
share opinions, and where they conflict, service users' views are

4. Survivors' views are reframed to coincide with professionals'

[Quoted by Angela on page 4]

Reclaiming our voices

We focused on passages in Angela's chapter where she says:

     "Survivor research directly challenges the silencing and
     exclusion of service user and survivor voices from
     mainstream research.  In doing so, survivor researchers
     also challenge the sociological tradition of
     understanding and representing our worlds through the
     lens of detached academic interpretation."

She quotes from Peter Beresford's theory (2003) in It's Our Lives: A
short theory of knowledge, distance and experience that

     "The greater the distance between direct experience and
     its interpretation, then the more likely resulting
     knowledge is to be inaccurate, unreliable and distorted."

Peter Beresford believes that survivor researchers need to reclaim
and re-explore the role and value of first-hand experience.

Melanie Anne Ball commented that the idea of research based on
experience being at the same level as research based on observation
is new. There is academic rigour in survivors research based on
experience, but this is not generally known and main-stream
professional researchers are resistant to a change in assessment. The
public are simply not aware that there is such a thing as research
based on lived experience.


Best wishes, Andrew


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