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!

Monday, 29 July 2013

News from Survivor History

From Andrew Roberts
Secretary Survivors History Group
telephone: 020 8 986 5251
home address: 177 Glenarm Road, London, E5 ONB

The next meeting of the Survivors History Group will be held on
Wednesday 31.7.2013 from 1pm to 5pm at Together, 12 Old Street,
London. Everybody is welcome and refreshments will be provided.

In the first part of this newsletter we described the great slough of
despond into which the project to write a book on "Survivors History
from 1800 to 2015" has fallen. We told how Peter Campbell and
Thurstine Basset struggle to stop Andrew's head from going under the
mud - glug - glug - , and how Peter Geary does the same with respect
to meeting minutes. (-:

Just to remind you that the progressive (-: part of the depression
)-: , the broad outline of the book that Peter and Andrew plan, is
available on the website at

This will become more informative as the draft grows.

That completes the depressing issues. Now for the progress and
achievements. These are grouped under Jessica Emily's work, Asylum
newsletter, Sheila's work, Anne's work, Core Arts book, Patsy's work,
the Psychology book, David, Natalie and Myra's work, the Kingsley
Hall book and Ian's work.


Jessica Emily, the daughter of Angie Sweeney and James has been
making light work of growing up. It is two and a half years since she
last sent us a photograph, but when she heard about the gloom and
depression she decided to do something about it and sent flowers for
a brighter future to our website: http://studymore.org.uk/mpu.htm

And all the rest of the news is good as well:


Asylum (the magazine) has started a newsletter. It is brief and
pretty, unlike this one. I think you subscribe to it by going to
http://www.asylumonline.net/ and filing in the form that says "sign
up to the email list". I attach a copy


Sheila Beskine continues to work the magic of lateral thinking on our
depression, although sometimes she puts her own head in her hands
because there are too many lines to draw. It is simplest to start at
a point where lines meet. Sheila suggests Withymead near Exeter,
established in 1941 by Irene Champernowne, a Jungian psychotherapist
supported by Dartington Hall. Lines met in my life standing by the
river Dart at sunset and looking across at Dartington. I was an
eleven year old from London on his first camping trip. The man in
charge of our camp thought I was homesick, I was thinking how
beautiful the river was. I have started to work Withymead and art
therapy into the timelines and ordered a copy of Anthony Stevens'
"Withymead: A Jungian community for the healing arts", recommended by
Sheila. I will bring this to a future meeting.


The survivor history based on evidence that we have developed has
depended on the archival work of Anne Plumb and other collectors. On
Sunday 16.6.2013, Anne made a presentation about her work and her
archives at the second Unofficial Histories Conference. The first of
these conferences was held on Saturday 19.5.2012 at Bishopsgate
Institute in London. The conferences are free public events to
"discuss how society produces, presents, and consumes history beyond
official and elite versions of the past". Amongst other features of
the Bishopsgate conference was an introduction to the survivor
stories of victims of the sterilisation laws in Canada.

The second conference was held over two days in the John Dalton
Building at Manchester Metropolitan University. Anne Plumb's "Going,
Going, Gone: Grassroots Archives" made the point that unless we look
after it, the material on which an evidence based history can be
constructed will be lost in attics or, more likely, re-cycled through
a paper shredder.

Anne's presentation was of two archives that she has developed and
preserved. The first is that of Ken Lumb (1941-2009), her husband for
many years and a leading disabled activist in the north-west. Her
account includes Ken's early years and includes material relating to
the Union of the Physically Impaired Against Segregation (UPIAS)
whose Social Interpretation of Disability lies behind the 'Social
Model of Disability'. These early foundations in the 1970s were
taking place at the same time as mental patients unions were
developing. To clearly distinguish disability from mental health
system survivors, Anne uses a USA definition (1987) by the Mental
Health System Survivors group within re-evaluation counselling. The
group and definition were developed by Janet Foner (now a director of
MindFreedom). Anne says "Definitions are controversial . Diversity,
however, gives balance to archives. Their potency often lies in their

Anne's second archive is called "Ear to the Ground: (Mental Health)
Survivor and Ally Voices, organisation and action". It contains
leaflets, pamphlets, flyers, press cuttings, newsletters, and other
publications collected since the 1970s. In preparing her
presentation, Anne has developed a valuable way of sharing an
overview of survivor literature and we are working towards making the
presentation available to everyone by integrating it into the
Survivor History website. We will also need to think incorporating
the archival history (that is the methodology that Anne has been a
leader in developing) into the book. We plan a "do-it-yourself" book
that will encourage people to make their own history, in all senses,
so it is important that we make clear the practicalities of keeping
and working with documents.

Anne says of archives like those of Survivor History Group members
"These archives raise issues for historians writing about either
disability or mental health activism and history - do these 'second-
hand histories' tally with our own experience and recollections? Are
activist archives sought out? Are they accessible, physically and in
this digital age? What about the confidential internal circulars of
the UPIAS? What happens when the activists' lives come to a close?
Where might they be conserved? should they be bought together in a
single repository or kept in the localities out of which they grew?
What happens when organisations are forced to restructure and indeed
to close? Who cares about the minutae of executive meetings?"


In 1992, Hackney artist Paul Monks used an abandoned ward at Hackney
Hospital as his studio. Some of the psychiatric patients took an
interest in his eccentric activities and helped him. With limited
funding, Paul and his new colleagues managed to create an open
studio. "Several successful exhibitions later, Core Arts was
officially born, gaining charitable status in 1994."

Core Arts is now based at 1 St Barnabas Terrace, Homerton, London E9
6DJ http://corearts.co.uk/ It featured as a Hackney museum
collection earlier this year and the exhibition has been turned into
a book that can be bought as a printed document or downloaded free as
an electronic document

Core Arts 2013 "Creative Journeys: Responses To Mental Health in
Hackney, Present and Past" available at
http://corearts.co.uk/Assets/DOWNLOADS/pdfs/creative%20journeys .pdf

Now we need to be honest about this book. It is absolutely
overpowering. If like me, you immerse yourself in the exhibition
exhibits, you may need a holiday to assimilate your experience - Do
not expect to just get on with your life as if nothing had happened.

Everything in this book is relevant to Survivor History, but the two
items by Frank Bangay and Mark Roberts are directly addressed to it.
I suspect that there are as many authoritative histories of Mad Pride
as there are people with a Mad Pride history, and Mad Pride always
was both fantasy and fact, seeking to create a memorable image in the
public mind. For the Survivors History book I think we will need to
collect the stories and investigate the dates and events without
destroying the inspirations. Frank's contribution does not mention
Mad Pride, I suspect he left that to Mark. However, alongside the
other biographies of Frank (including his book Naked Songs and
Rhythms of Hope, which was launched at the first ever Mad Pride gig
in June 1999) this provides an in-depth introduction to the history
and culture from which Mad Pride emerged. The roots of Mad Pride run
deep into the old asylums and alternative music venues of the 1970s.
Mark's "Mad Pride Notes" start with Simon Barnett and Ray Rowden.
Simon was a chair of Survivors Speak Out sometime in 1997/1998,
during the period when it struggled with its bureaucratic
organisation. Mark was also on the coordinating committee. But who
was Ray Rowden? Apparently the founders of Mad Pride decided to break
from the formal survivor based democracy of Survivors Speak Out and
to seek help in unusual places. "Our first formal meeting was held at
NHS London's HQ in Eastbourne Terrace. And Mad Pride's first chair,
was Professor Ray Rowden who also headed up the Special Hospital
Authority - comprising Broadmoor, Rampton and Ashworth. He drove a
Rolls Royce.... Most of the nonusers of mental health services
stepped down when Mad Pride got going and gathered together a bunch
of survivors." Debrett's "People of Today Online" has a great deal
about Dr Ray Rowden, but it does not mention Mad Pride.


The top of a ridge is a watershed. Rain falling on it either goes
down one side of the hill and arrives, eventually, in one ocean, or
down the other side of the hill to arrive in another ocean. In 2009
it appeared to me that This is Survivor Research, edited by Angela
Sweeney, Peter Beresford, Alison Faulkner, Mary Nettle and Diana Rose
marked a watershed in survivor history. From now on the sparkling
water from survivor research could flow into the dark muddy ocean of
academia. It was a great achievement, and on the way up the hill the
walkers had passed many milestones, some of which are mentioned by
Angie in the introduction to a book edited by Patsy Staddon. The last
of these milestones was the joint survivor-sane seminars called
"Researching in Mental Health: Sociological and Service User/Survivor
Perspectives" held at the British Library in the spring of 2009.
Survivor History Group provided an exhibition at each of these
seminars and, as a result, we have been given free copies of a book
based on the event. One for our library and the other for lending. I
will bring the lending copy to the meeting on Wednesday.

Before we leave the analogy of the watershed we will note the sad
truth that the water flows away from the survivor ocean. How many
people at the sparkling celebrations of survivor culture at St
Cements Hospital last week could afford the £56 bargain price, let
alone the full £70 price of this book? Academia certainly needs a
survivor tonic, but we must find ways of taking something back.

Here is a list of the contents:

Patsy Staddon 2013 (Editor) Mental Health Service Users in Research:
Critical Sociological Perspectives Policy Press.



Sociology and survivor research: an introduction by Angela Sweeney

Mental health service users' experiences and epistemological fallacy
by Hugh Middleton

Doing good carer-led research: reflecting on 'Past Caring'
methodology by Wendy Rickard and Rachel Purtell

Theorising service user involvement from a researcher perspective by
Katherine C. Pollard and David Evans

How does who we are shape the knowledge we produce? Doing
collaborative research about personality disorders by Steve Gillard,
Kati Turner and Marion Neffgen

Where do service users' knowledges sit in relation to professional
and academic understandings of knowledge? by Peter Beresford and
Kathy Boxall

Recognition politics as a human rights perspective on service users'
experiences of involvement in mental health services by Lydia Lewis

Theorising a social model of 'alcoholism': service users who
misbehave by Patsy Staddon

'Hard to reach'? Racialised groups and mental health service user
involvement by Jayasree Kalathil

Individual narratives and collective knowledge: capturing lesbian,
gay and bisexual service user experiences by Sarah Carr

Alternative futures for service user involvement in research by Hugh

Brief reflections by Patsy Staddon.

There is a lot to help with our history here, but I will just mention
Jayasree Kalathil's chapter on "racialised groups". This not only
outlines the top-down approaches of policy makers to inclusion, it
also provides a better framework for us to work with. Jayasree says
"there are practices, prejudices, belief systems and experiences that
collude to create exclusion of some communities". In Survivor History
we have the great benefit that groups like SIMBA (Share In Maudsley
Black Action) and THACMHO (Tower Hamlets African and Caribbean Mental
Health Organisation) have not accepted exclusion, but have used all
their innovative power to share.



John Cromby David Harper and Paula Reavey's "Psychology, Mental
Health and Distress" (Palgrave 2013) is not "just anti- psychiatry"
(p.12). In fact, it is a creative and thoughtful re-working of what
would once have been called "abnormal psychology", that is the
psychology of people like us. The originality of the book lies partly
in its historical and cross-cultural approach. The first chapter is
called "From disorder to experience", The second "History", the third
"Culture" and the fourth "Biology". Only after the authors have
provided us with a framework for understand our lives as paths
(lifelines) through (enabled by) cultural and biological reality, do
they discuss "diagnosis and formulation". Cromby, Harper and Reavey
have drawn heavily of the historical material on our timelines, which
they acknowledged with a complimentary copy of the book. The larger
part of Chapter seven "Service Users and Survivors" is written by
Peter Campbell. His section on "Service Users/Survivors and Mental
Health Services" is followed by a shorter section by Eleanor Longden
and Jacqui Dillon on "The Hearing Voices Network". All of this
chapter will need careful reading by the Survivors History Group .


"Ravaged Wonderful Earth - A Collection for David Kessel", published
by Outsider Poets in collaboration with F.E.E.L. had a spectacular
launch at the "Outsider Poetry Open Mic" on Thursday 25.7.2013 in the
historic Wentworth Stanley Hall of old St Clements Hospital in Bow.
This is the survivor side of the watershed: £5 for the rich, £3
concessions, for the book. Entrance fee: Free.

Natalie Fonnesu took the photographs and, with Myra Garratt organised
the evening. One day someone must write an account of the music, the
singing, the dancing, the poetry, the comedy, the action painting and
the children. I was in pain physically and mentally, but I enjoyed
it. The book is rich in history, poetry and memories. Myra tells us
about the Friends of St Clements, established in 1987 "To relieve
patients and former patients of the London Hospital (St. Clement's)
and other invalids in the community who suffer from mental illness or
the effects of mental illness and generally to support the charitable
work of the said hospital." What should they do about their name when
the hospital moved to Mile End Hospital in 2005? In such
circumstances David was never stuck for an answer. He had established
LUMP (the London Union of Mental Patients) and similar groups in the
past. Now he suggested FEEL: Friends of East End Loonies. Officially
the Friends just added "at Mile End Mental Health Unit" to their
name, but Friends of East End Loonies "was already embedded in the
minds of enough people to result in a life of its own". FEEL began
meeting in November 2007. Its Facebook site was established in the
autumn of 2009 by Nathalie Fonnesu, who also created the FEEL Blog in
May 2010. In such ways is life breathed into the worthiest of

David's book contains a mixture of his poetry, other people's poetry,
reminiscences about David, comments on his poems and comments on his
philosophy. Peter Barham grapples with David's radical
("unfashionable") concept of himself as a "chronic schizophrenic" and
tries to show that it fits into the overall vision explained
elsewhere by Tim Pearson: "perhaps, one day, the acknowledgement of a
common brokenness... will allow the soul to hear its own shattered
cry... Then, in the darkness of this wounded space, Earth and heaven,
body and spirit, might know their unity in an infinite care".

One of FEEL's achievements was the Pageant of Survivor History
performed on Friday 19.3.2010 at Kingsley Hall. Natalie now proposes
to revive the Pageant. The St Clement's open mic "turned up to be a
great success and we have been now asked to repeat a similar for the
closing night of the film festival, Shuffle on Sunday the 18th of
August. So now, in the process of the planning, the idea of the
Pageant comes back upfront." She promises to not involve Andrew
Roberts, and says "I only wish to ask you to inform you that we might
progress in doing it for this occasion. I will come along at the
meeting on Wednesday to inform you about the program and ask if
anyone wishes to join in this."


In the 1960s Kingsley Hall was not the place for FEEL events but a
kind of alternative lunatic asylum run by a group of psychiatrists
led by Ronald Laing. A book that tells you what the people who lived
there think has now been published. You need £165 to buy a paper
copy, but just £5 to download the digital pdf version. This is a
bargain. It will take you some time to work out how to read it by
changing the zoom as you adjust to the layout, but it is worth it.

The book has been put together by photographer Dominic Harris who has
traced and photographed people who lived there and interviewed them.
You will find plenty to feed your admiration (if you are so inclined)
or your disgust (if you are so inclined). I am hoping that by reading
it I will form a moderate opinion, but it will be difficult because
the opinions in the book are so extreme. Can one average "he was
probably the most unethical person I ever met" and "Ronnie became
like a real father to me"?

Harris, D. 2012 The Residents: Stories of Kingsley Hall, East London,
1965-1970 and the experimental community of RD Laing London: Dominic
Harris. 88 pages. Available http://www.dominicharris.co.uk/

IAN'S WORK Ian Ray-Todd works hard to keep our spirits up with emails
about the Rev Paul Nicolson and Taxpayers Against Poverty. This is an
alliance of right-minded people who do not think in terms of benefit
scroungers but in terms of society as a system of mutual support and
recognition. Go to http://www.taxpayersagainstpoverty.org.uk to find
out more. You do not have to be a taxpayer (or a Reverend) to join.
The emphasis is on mutual support and creative protest against
benefit cuts and their effects.

Best wishes, Andrew

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