| Survivors History archive of Survivors United Network (S.U.N.) website created by Andrew Hughes of Mental Health Training at http://www.artofawareness.co.uk/ using Microsoft Word 9. The orginal S.U.N. homepage was dated 23:45:00 on 23.10.2000. Fourth revision saved 17:44 on 24.12.2000 |
SURVIVORS' UNITED NETWORK
S.U.N. produces a monthly printed newsletter and ezine. These are available free of charge to all survivors', mental health service-users, ex-users and people who experience mental distress. The resources aim to spread topical and interesting information, to assist people and groups to work together and to highlight positive examples of what people who experience distress can do.
The S.U.N. website is being changed to make it more consistent when viewed in different browser software.
I hope you will be patient while I build up the content again.
You can get more information about the S.U.N. resources by emailing me at sun@artofawareness.co.uk
The links below will take you to pages containing the stories of prominent survivors in the U.K.
Peter Campbell was born and brought up in the Scottish Highlands. In 1967 he went down to England to study at University and almost immediately was admitted into a psychiatric unit. Between 1967 and 1972, he was in four different hospitals (two in Scotland, two in England) before graduating and ending up in one of the "Epsom Cluster" asylums for a year. He then moved to London, where he lived in a therapeutic community in the Ladbroke Grove area and came into contact with COPE, an offshoot of the Mental Patients Union. He did not get actively involved at this point. For most of the next ten years, Peter was on the "bed-sitting room circuit" in North West London attempting to build a career, first working with pre-school children (not something a "psychotic" male would have much joy with in the 1990s) and then as a bookseller. In the early 1980s, he gave up any idea of a conventional career and began to address the discrimination facing people with a mental illness diagnosis. He began to work regularly as a "volunteer" with Mind in Camden. At this time there were very few independent service user groups. Peter was involved with CAPO (Campaign Against Psychiatric Oppression), although he was never a member and British Network for Alternatives to Psychiatry which had links to David Cooper and R.D. Laing and was a mixture of survivors and mental health workers. In the mid 1980s, ideas of advocacy and service user involvement had barely emerged. Peter was one of the first survivor members of Camden Mental Health Consortium, a group growing out of the concern about closure plans for Friern Barnet Hospital that became one of the earliest local service user led groups. In 1986 he was a founder member of Survivors Speak Out and continued to be actively involved, often as an officer of the organisation, until 1996. In 1991, he and three other survivor poets that he had first met through CAPO Poetry and Music Events founded Survivors' Poetry. Round about the same time, Peter began to earn a living as a freelance writer and trainer in the mental health field - a job that he continues at the present time. He continues to receive mental health services as an in-patient and out-patient. Fifteen years on, Peter wonders whether service user organisations are not too closely involved in mental health services. To what extent have groups attempted to address the general public rather than mental health workers? Why has the "user movement" done so little to work with other oppressed groups? Why is our record of action on civil rights issues (unless they are part of Mental Health Act changes) so poor? Why have service user/survivor organisations always found it so difficult to communicate and work with each other? Peter's greatest fear - that people with a mental illness diagnosis will be seen as a special type of disabled citizen whose social inclusion depends upon good behaviour and complying with a programme of activities and treatment. Greatest hope - that the general public get to hear about and appreciate the achievements of collective action by service users/survivors. Important tip - if you don't enjoy service user action, get out of it and find something you do enjoy .
My history of involvement in the user movement:
It all began one sunny day
in Burley in Wharfedale, in the Yorkshire Dales, round about 1981, where I
was on a camping trip with my sister and our children. It was the first
time I had done anything so adventurous for many years. It was 10 years
after my experience of psychiatric 'help', and maybe I needed all that time
for the the physical, spiritual and emotional damage caused by treatment,
as well as the shock of the breakdown itself, to heal enough for me to look
up from the day to day struggle for survival. The beauty of the
surroundings; hills, valleys, streams, opened up my own inner horizons, and
I knew that I wanted to DO something in the wider world again. I remember I
began talking to my sister about my hopes and dreams. I don't remember what
I said, but I remember that hope reawakened, and my process of recovery
began from that day.
Around
1982 I became aware that people were talking
about mental health. Women in London were coming together and sharing raw
and passionate feelings about their lives and what was wrong with the
mental health system. Books were being written about feminist therapy and
self help.
This was not the actual beginning; the roots of the movement go
much further back, but I had not been aware of it before. At some point I
had picked up an echo of the older movement in a leaflet from
PROMPT (Promoting the Rights of Mental Patients in Treatment)
but something about the heavily political and impersonal writing in this
didn't appeal to me.
I wanted to explore things in a more personal way. It was through meeting
with other women that I found my way in. Not that this was trouble-free; I
have written elsewhere about my first experience of involvement in a women
and mental health group, which was often frustrating, distressing and
unsisterly, though also at times loving, supportive and exciting.
During
the early years of my involvement with the movement I was recovering not
just from my psychiatric experiences, but from a lifetime of feeling there
was something 'wrong' with me; that my experience of feeling oppressed,
isolated and frightened in group situations was all my own fault. Being
able to share these feelings and belong to groups which felt, if not
entirely safe, at least safer and more accepting than any I had known
(other than my contacts with other women patients in the psychiatric ward)
was part of my healing.
All I can describe here are a few peak moments of
the next 17 years. I went back to college in
1983 and began researching and
writing on ECT: I had an article published in Spare Rib, and another in the
left-wing 'London Labour Briefing' entitled 'A Scream of Rage'. This was in
response to feminist consciousness-raising, and was my 'coming out' to the
Labour Party about my personal experience and the politics of the personal.
The first major involvement I had with the survivor movement was with the
production of the TV programme
'We're Not Mad, We're Angry' in the period
from around 1983-5. This was eventually shown twice on Channel 4. It was
the first survivor-led mainstream media event (there still haven't been
that many) and made a huge impact.
I remember it as a time of sitting for
many hours in Annie's basement, drinking tea and inhaling other people's
ciggie smoke, watching the interview clips and collectively editing it down
to the required hour. My own interview in the film was on ECT and how it
had reinforced my oppression as a working class woman. During that period I
met such wonderful and enduring stars as Peter Campbell, Mike Lawson, Annie
Newnham, survivor artist Sarah Rivers (Hutchins), musician Peter Connors
and many others.
I joined
Survivors Speak Out in 1986, and went to the
ground-breaking
Edale conference in summer 1987: a big and personally
terrifying moment for me. I 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.
I took up the new post of Consumer Network Co-ordinator at
MIND in
December 1987, and worked with the existing Consumer Advisory
Panel, meeting a host of stars such as Peter Beresford, Lisa Haywood,
Graham Estop and Anna Neeter. Anna went on to create the Kaleidescape
Cabaret, which played for two seasons at the MIND conference. I was part of
this, and definitely one of the peak moments in my life in the survivor
movement was singing 'Outside the Lunatic Asylum' on the stage in Blackpool
Winter Gardens!
At MIND I felt that my role was to help facilitate and
nurture the user movement within and outside MIND, while avoiding trying to
swallow it all up under the MIND umbrella. I set up training for MINDLINK
members in the regions, put in some of my time and funding to help the
development of UKAN, and used the MINDWAVES newsletter to publicise
survivor and user-led initiatives around the country.
I wanted to see MIND
gradually become more user-led, and kept a list of the MIND Council of
Management on my wall, the survivor members highlighted in yellow. During
that period, other organisations were also taking an interest in user
involvement, including NSF (Voices), the Sainsbury Centre (the user-led
publication 'Whose Service is it Anyway'), health service unions such as
COHSE, and eventually even the Government.
I tried to keep an involvement,
or at least an awareness of everything that was going on and reflect it in
MINDWAVES, but as the movement grew, this was increasingly difficult. The
most amazing experience I had during that time was a 2 week visit to Japan,
to take part in a series of events to mark the end of the UN Decade for the
Disabled. I spoke in about 13 Japanese cities about the need to involve and
respect users' experience. Also, visiting America for their national
advocacy event; spending time with (to me, legendary figures) like Judi
Chamberlin, Rae Unzicker and Leonard Roy Frank, who wrote 'The History of
Shock Treatment'. These opportunities were healing for my personal
self-esteem, and permanently ended my aggrieved sense of being the slum kid
who had missed out on all the good things in life. As MINDLINK grew, the
time and resources didn't, so in 1992 I left and went freelance. Wonderful
Madie Chapman took over MINDLINK and with her clear thinking broke through
some of the barriers which had been holding up its further development. For
me, becoming freelance meant getting out of the centre of things and back
to the grassroots, which was probably a good thing for me at that stage, or
my ego might have taken over completely! Jim Read and I wrote our series of
publications for COHSE/UNISON on user empowerment, advocacy and equal
opportunites, and I was asked to work on advocacy development in North
Herts and Harrow, meeting new stars such as Veronica Dewan and Chris
Wright. I facilitated user-led research by Asian and African-Caribbean
users in Waltham Forest, and was part of the Mental Health Task Force User
Group. This was an incredibly difficult and frustrating experience: being
shut in a claustrophobic small room in Richmond House for many hours, where
we worked and fought over the planning of ten conferences, a series of
training workshops for user trainers, the Users Charter and the big
national conference (held in 1994). The process was worth it for the
achievement of making user involvement more widely known and accepted, and
for the publications and the survivor conferences we held, but at the end
of that two year period, I had had enough of national self-advocacy
politics. I decided to concentrate on my own research and on my interest in
complementary therapies. Three years on a PhD at South Bank University
sounded at first like a haven. Unfortunately it wasn't, and the PhD (on
users' experiences of crisis and treatment) still isn't finished, though I
have now restarted it. However, my research experience and my training as
an aromatherapist and Reiki practitioner, led to me getting a job in the
wonderful Strategies for Living user-led research project at the Mental
Health Foundation, managed by another star, Alison Faulkner. I am now
managing the Foundation's adult mental health programmes, and have devised
a project called SPIRAL, which will fund work on preventing mental
distress, early intervention, recovery, and innovative learning. So, for me
its been a personal story of growth and learning, and getting to know a
series of wonderful stars, who I have worked with and watched flourish over
many years: some other notable names being Roberta Graley, Marion Beeforth,
Mary Nettle, Louise Pembroke, David Crepaz-Keay, Karen Campbell, Jean
Taylor, Viv Lindow, Vicky Nicholls, and my special friend Ros Caplin, who
died last year. Apologies for not listing the many many others I have been
close to and who have contributed so much, often unpaid time, out of their
own painful experiences to help others and create an unstoppable movement
for change. As I've indicated, its not all been sweetness and light, but I
don't see the point in dwelling on all the arguments and difficult times.
Its been a life I never expected to have and which has given me so much,
that I don't have any regrets now about the wasted years of my childhood
and early 20s. Each person has so much in them that the psychiatric system
generally never even notices, and which its treatments tend to suppress.
The liberation of that power through working together is, I believe, the
real aim of our movement. Its happened for me and I've seen it happen for
so many others. I do believe that we can change the world.
Mike Lawson is a survivor activist with over thirty years experience. A
founder-member of The Mental Patients Union in the mid 1970s and a
founder-member of Survivors Speak Out in the 1980s. As Vice-Chair of
National Mind from 1986-1992, he continued to fight for alternatives to
psychiatry and recipient advocacy both nationally and internationally.
Well-known as a broadcaster and writer on mental health issues, he
continues to promote the authentic voice of individuals who find themselves
at risk of psychiatry and the "mental health" trap. Mike Lawson was born in
an internment/forced labour camp under Stalin's Russia in 1948. After four
years and a nomadic journeying from camp to camp Mike was released from the
camp after being separated from his father, who was released just a few
days before Mike was born. In Berlin Mike was cared for by his maternal
grandfather, as his mother could not stay in Berlin and emigrated to
England. After three years in Berlin Mike was reunited with his mother in
London. To learn a new language and culture at the age of 7 is not an easy
thing. Mike felt alienated and depressed, in the words of his adoptive
father "there had been one change too many". At 17 Mike was due to go to
work, one Monday morning, unable or unwilling to move from bed the journey
to Napsbury Psychiatric Hospital was assured. From 1965 to 1971 Mike
experienced the full thrust of psychiatric intervention from chlorpromazine
to the E.C.T no effort of psychiatric imposition was spared him. After many
readmissions and a cacophony of shrinks and diagnostic labels he left the
bin and subsequently got married and politically activated. After losing a
job with the civil service Mike fought an unfair dismissal case through the
joint support of his trade union and MIND. Subsequently he became a
survivor activist as a founder member of The Mental Patients Union and
later Survivors Speak Out. In 1986 he was elected vice-chair of National
Mind replacing a psychiatrist on the council of management. Having
collaborated with "Were Not Mad Were Angry" shown in 1986 and numerous
newspaper articles; radio broadcasts and the setting up of a number of
local self-advocacy groups Mike continues to work for a better
understanding. Now Mike lives in a council flat in London. At the age of
51, after enormous bouts of depression, he is involved in performance
poetry, poetical and political publication, broadcasts highlighting the
need for a new understanding of mental health issues and the gargantuan
efforts of the art of survival. .
Profile of Mary Nettle, a Mental Health User Consultant
I have been earning my own living in this way for the last 9 years. How did
this happen? It's always best to start at the beginning. I was born
47 years ago in Beckford a small village nestling at the foot of
Bredon Hill
in the Vale of Evesham. My mother and sister still live in the house where
I came into this world and I am very lucky to have secure roots in such a
lovely place. I was sent away to a convent boarding school at the
age of 10
and then went to Bristol Polytechnic where I achieved one of the first
Higher National Diplomas in Business Studies and a Diploma in Advanced
Marketing. After college I went to work in marketing research in Eastcote,
Middlesex on the northern outskirts of London. I shared a house with two
other people one of whom I married in
1977. Six months later
I had a
'nervous breakdown', I was under pressure at work and one day had
'hysterics' in the office. I ended up in St Bernard's, a horrible Victorian
asylum for three months. I had become a user of the mental health system
and been given the label of manic depression. This had, as you can imagine,
a profound effect on my life and of those close to me. My husband developed
into chronic alcoholism and died of cirrhosis of the liver in
February 1998
at the age of 48. I was chemically enabled to cope with his increasingly
unacceptable behaviour. Today,
February 2000, I am not on any prophylactic [psychiatric?]
medication and have learnt by listening to my colleagues in the user
movement how to manage my illness. Without their inspiration, help and
support I would never have been able to do what I can now. I am, among many
other things, chair of Mindlink the user voice within the national mental
health charity Mind and a Mental Health Act Commissioner. I feel valued and
hope that in a small way I am enabling others to gain the benefits of
speaking up and speaking out. It feels good to have turned a negative into
a positive. Let's hope this can happen for many more mental health service
users.
PETER BERESFORD is professor of social policy and director of the Centre
for Citizen Participation, Brunel University. He also works with Open
Services Project. He is a long term user of mental health services and
actively involved in the psychiatric system survivors movement.
Here is his own story of his life within mental health self-advocacy.
I have used mental health services for 12 years and lived on benefits all
told for more than 10 years. I wouldn't recommend either of these things to
anyone. I don't think I could have imagined what the poverty and distress
involved were like if I hadn't experienced them myself. This is one reason
why direct experience seems so important to me and why I am committed to it
being valued and treated with equality.
Mine is hardly a unique story. I want to stress that I know that my
experience isn't unusual or exceptional in any way. But in terms of loss of
choice and hope, sense of fear and worthlessness and of sheer wretchedness,
I wouldn't wish it on anyone but my worst enemy. I hope I never go back to
it. If I did - and it is something I dread to think of - I fear whether I
could manage. But then I have friends for whom contact with mental health
services, the loss of freedom that goes with poverty and routine hassles
with the benefits agency, are continuing experiences. Knowing this is one
way for me of coping with the possibility of going back. I like to think of
myself as a psychiatric system survivor, but I don't ever assume that I
have seen the last of all this or that one day I won't need to seek escape.
I also know that while I am currently not using mental health services, and
have other sources of support, that I don't know what tomorrow may bring
and that the reasons I came into contact with the psychiatric system are
still with me, are part of me and will be for the rest of my life.
But having said all this, I am also proud of what I have done, what I have
been through and what has happened to me. I am proud I have had these
experiences and so far have got through them. I don't believe in the
virtues of suffering, but there is truth in the saying that what doesn't
kill, you strengthens you (and adds to your knowledge and understanding) I
am proud of the road that poverty and distress have helped set me on and
the way that they have helped me gain some understanding and wisdom both
about myself and others. I am proud of the work they have made it possible
for me to do to try and change things and make them better. I am proud to
have been involved in the setting up of MindLink, the development of
Survivors Speak Out and now of Shaping Our Lives. I am proud of the chances
I have had to work with other service users/survivors to make change -
Suzy, Fran, Kathy, Michael, Ian, Cohn and many more - you know who you are.
I value the support and understanding I have received, especially from
Suzy, Maggie, Catherine, Esther, Rebecca and Ruth. I want to remember those
who have died on the way - Julian, Ros, Doris, Brian and Maria and say
thank you for your struggles, for what I learning from you and for knowing
you.
Perhaps the greatest gain I have got from being involved in the survivors'
movement is that it has both provided me with opportunities to be myself
and
helped me understand that it is possible to be me. I don't have to be
ashamed or hide myself away. I no longer always have to pretend to be
someone else. I remember when I first realised this at a meeting with other
survivors. It was a liberating feeling. It made me catch my breath. I could
just be who I was - no best behaviour was necessary. It was one of the most
life-enhancing and empowering things that happened to me. It is one of the
lessons which I most value and which I am most proud of beginning to learn.
If it means anything, all this is what mad pride means to me.
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