SURVIVORS AND ROSE GARDENS

Alternative dreams and realities
A discussion based on Searching for a Rose Garden: challenging psychiatry, fostering Mad Studies - a collection of articles edited by Jasna Russo and Angela Sweeney.
Based on a meeting of the Survivors History Group held Wednesday 26.7.2017. The first part of the meeting to discuss "alternatives to something" and the second "what is Mad Studies"?

1a) An introduction to the concept, metaphor or poetic image of a Rose Garden that explains how the book got the first part of its name.

1b) Discussion of the Rose Garden idea, taking flip chart notes of what people think, especially about user led alternatives.

2a) An outline of the user led alternatives covered by the book. Comments on the kind of alternative they are and some comments on some things not covered.

2b) Discussion of the alternatives covered, their range, and what people know about that is not covered.

3a) Outline of some of what has been said about what Mad Studies is.

3b) Discussion of what Mad Studies is.

The rose garden

A story in parts: From thorns to gardens - The sympathetic psychiatrist

From thorns to gardens

In 1297 a poetic historian wrote of roses springing from briers. Other writers wrote of blackberries growing from the briers. Brers (briars) were thorny tangles of wild roses and blackberries. To be "down amongst the briars" would be a frightening and painful experience.

In 1535 an English translation of the bible called on people to flourish (flower) "as the rose garden", and sing a song of praise.

From about 1525 we have written evidence of ornamental gardens in Britain where rich landlords paid gardeners to grow roses in beds between paths for the owners to walk along savouring the scent and beauty of the rose, without suffering from its thorns.

A rose garden is a place of beautiful, trouble free escape, where someone else copes with the painful thorns

In the sixteenth century only rich people had rose gardens to walk in. By the middle of the twentieth century their were rose gardens in public parks where ordinary people could take a quiet walk on a Sunday afternoon. Even lunatic asylums had rose gardens where inmates could stroll in the sunshine, perhaps with attendants.

The sympathetic psychiatrist

Frieda Fromm-Reichman was a Jewish psychatrist who fled to the United State to escape Hitler and the extermination of the Jews. An article by her in 1954 warns a patient against "expecting life to become a garden of roses after her recovery". She should not expect a thorn free existence.

One of Frieda Fromm-Reichman's patients was Joanne Greenberg. Doctor and patient formed a very close relationship and Joanne Greenberg later used this as the basis for a novel called I Never Promised You a Rose Garden, published in 1964 under the pen name Hannah Green.

The psychiatrist in I Never Promised You a Rose Garden has a profound belief in her patient and her ability to cope with reality. In the asylum, the patient encounters devastating denials of justice and she says to the psychiatrist

"What good is your reality, when justice fails and dishonesty is glossed over and the ones who keep faith suffer... ?"

To which the psychiatrist replies

"I never promised you a rose garden. I never promised you perfect justice and I never promised you peace or happiness. My help is so that you can be free to fight for all these things."

The rose garden republic

To understand what happens next in this story, I think we need some poetic transformations. In place of the sympathetic psychiatrist who identifies with her patient we must have psychiatrists armed with hypodermic needles (thorns) who get nurses to pin their patients to the floor whilst they inject a sedative drug which will prevent the patients escaping for a meeting in the asylum rose garden, where they plan to set up an autonomous patient republic.

In September 2011 an International Conference took place in Berlin, Germany, called "Searching for a Rose Garden. Fostering Real Alternatives to Psychiatry". Searching for a Rose Garden was to "introduce and explore alternatives to psychiatry that build upon survivors' knowledge". Introducing it, Debra Shulkes said

"We do not accept the answer delivered famously by the psychiatrist character in Joanne Greenberg's semi-autobiographical novel that we were not 'promised a rose garden'. The determination of the global user/survivor movement to grow and safeguard this garden ourselves is evident in its extraordinary negotiation efforts leading to the adoption of the United Nations Convention of the Rights of People with Disabilities in 2006"

The main organiser of the conference, Jasna Russo, joined with Angela Sweeney in planning a book with the same title as the conference. However, they say

"subsequent contributions we received ultimately led us out of the 'field' of psychiatry and alternatives to psychiatry and we found ourselves at home in Mad Studies""

It would appear that the rose garden is seen here as a user led alternative to psychiatry. In the quote from Debra Shulkes, however it becomes "the determination of the global user/survivor movement to grow and safeguard this garden ourselves". It may, then have become Mad Studies. Finally, however, it becomes the right to look for something that we may or may not want. The editors say

"Our search for a rose garden that was never promised us is neither complete nor finished, and it might not even be a destination we wish to reach. The main value of the rose garden might be our right to search for it ourselves, collectively and regardless of anyone's promises. That right cannot be denied to people labelled mad anymore."

SO: WHAT IS THE ROSE GARDEN? WHAT ARE WE LOOKING FOR? AND WILL WE WANT IT IF WE FIND IT?

T.S. Eliot - Terry Simpson - and A different way of doing 'mental health'
Terry Simpson writes:
"In 'Burnt Norton', the first in TS Eliot's Four Quartets (1943), the rose garden is the symbol for the path not (yet) travelled, the alternaive reality. Eliot writes: 'What might have been and what has been/Point to one end, which is always present.' It's not to late to have the mental health system of our dreams." (page 159)

Alternative Projects

"When compiling the conference programme, it proved hard to find existing services that were conceptualised and led by survivors. The organising group deliberately decided to leave aside well-established alternatives to mainstream psychiatric provision, such as Sotoria, Windhorse or Open Dialogue, which all have one known professional (non- survivor) figure behind them" (Introduction, page 3)

Survivor-controlled practice

12. Becoming part of each other's narratives: Intentional Peer Support by Shery Mead and Beth Filson (pages 109-117)

Based in New Hampshire, USA. In 1995 Shery Mead started Stepping Stones "a peer run crisis alternative to psychiatric hospitalisation" for women who had experienced domestic abuse. A peer run "respite house" where people did not fear hospitalisation if they talked about intense feelings.

Intentional Peer Support "a process of relationship that seeks to explore the events in our lives and the stories we create out of them. Through dialogue, new meaning evolves as we compare and contrast how we have come to know what we know. Our shared stories create communities of intentional healing and hope" (page 109)

Intentional Peer Support website

13. We did it our way: Women's Independent Alcohol Support by Patsy Staddon

Based in Bristol, England. (website). WIAS: Women's Independent Alcohol Support "evolved from service user-controlled academic research" by Patsy [ "Women's Alcohol Dependency: some sociological factors." 2003]. "... focus groups, originally part of my PhD research, were so successful that they were restarted as support groups after the research... These groups continued for over four years in central Bristol" (page 120)

WIAS in 2016 "runs small women's groups within a women's project linked to a probation service".

"Alcohol use is understood by WIAS as a normal social activity that, like eating, can easily be taken to extremes and come to take the place of other kinds of nourishment and support. Alternatives that may be less harmful and more helpful are suggested and introduced over time..." (page 121)

14. Sexual violence in childhood: demarketing treatment options and strengthening our own agency by Zofia Rubinsztajn

Wildwasser [Whitewater] - survivor-controlled project for women who have experienced sexual violence in childhood. Based in Berlin, Germany. "Started in Berlin 35 years ago". Started as a self-help group of women in 1983. (a general website - not specific to Berlin)

"I am not certain how we can prevent 'survivor control from being turned into a label that can sell anything". (page 132)

Zofia Rubinsztajn has worked for Wildwasser for ten years. Before that she worked at a rape hot-lin and in an autonomous shelter for battered women and children. (page 235)

15. The Personal Ombudsman: an example of supported decision making by Maths Jesperson

Personligt ombud Skåne (PO Skåne) (website) is based in Skåne, the most southern province of Sweden. Established 1995. Run by Riksförbundet för Social och Mental Hälsa (see below) and the family support organisation IFS (the Schizophrenia Fellowship)

Riksförbundet för Social och Mental Hälsa, the Swedish National Association for Social and Mental Health, (RSMH) was established in 1967 "by and in the interest of people with experiences of mental and social health issues that has led to some degree of mental disability". (website)

16. Kindred Minds: a personal perspective by Renuka Bhakta

Based in Southwark, London, England. - timeline -.

Southwark Mind having won funding for three years to set up a local black and minority ethnic communities project, the members of the project voted to call it Kindred Minds. Initially it had three staff members, one of whom was Renuka Bhakta. Other names associated with Kindred Minds include Humphrey Greaves, Raza Griffiths, and Premila Trivedi (Kindred Minds Theatre Company)

17. The Sunrise Project: helping adults recover from psychiatric drugs by Terry Simpson

A Sunrise Center is proposed for Pajaro Valley, California, USA. Most of the Directors live in the United States, one lives in Canada and one (Terry) lives in Leeds, England. (website)

In 1985 Terry was helped to live without psychiatric drugs by a co-counselling group in Leeds. He was inspired by "Judi Chamberlin's brilliant account of survivor-led crisis services in the US". (Originally published in the USA in 1978, a British edition was published in 1988).

WERE THESE THE ALTERNATIVES YOU EXPECTED?

SOME QUESTIONS ASKED BY THE CONFERENCE: WHAT ARE THE ORIGINS OF SUCH ALTERNATIVES AS THESE? WHY DO PEOPLE ATTEMPT THEM AND WHAT IS THEIR VALUE? - WHAT POTENTIAL DO THEY HAVE?

What is Mad Studies?

David Reville, survivor historian at Ryerson University in Canada, used the term mad studies in 2011 in describing his course A History of Madness as "a project aimed at creating a space for mad studies". "We're on the brink of seeing the birth of a new discipline - mad studies". "There's lots of literature written from a medical perspective. Mad people's history, though, features writing by people who have experienced madness themselves". In Canada and Scotland, Mad Studies developed from "Oor Mad History" written by survivors to include other studies as well.

But Mad Studies is not necessarily a space for the mad or mentally distressed, or not for all of us, and not unconditionally. The glossary of Mad Matters: a critical reader in Canadian Mad Studies, published in 2013, defines Mad Studies is an "umbrella term" for a "body of knowledge" that has "emerged" from "psychiatric survivors" and "mad-identified people, antipsychiatry academics, critical psychiatrists, and radical therapists". The glossary defines psychiatric survivors so as only to include those who are ideologically committed to anti-psychiatry. It says a psychiatric survivor is "someone who considers herself/himself to have survived psychiatric treatment - often someone who has been treated by force".

Brenda LeFrançois, one of the editors of Mad Matters wrote a Foreward to Searching for a Rose Garden defining it as "foundational in Mad Studies". She says that

"Mad Studies centres the knowledge of those deemed mad, bolstered on the periphery by the important relationships, work and support of allies."

The interest of the Rose Garden editors developed from user led alternative projects towards mad studies. Some people have asked how the two relate in the book. This is my explanation: The book separates survivor controlled practice from survivor produced knowledge. It also distinguishes survivor control from working in partnership. It is in juggling these distinctions that the move to mad studies as the editors' "home" seems to take place. At the 2011 Conference, Peter Beresford's keynote speech was on "The Role of Survivor Knowledge in Creating Alternatives to Psychiatry", but most of the conference was focused on alternative practice. The book has much more on survivor knowledge. This leads to Mad Studies. Mad Studies, in turn, increases the interest in non-survivor (sane) participation (working in partnership) because of the number and influence of "mad-positive" sane people involved in the academic activities.

Mad Studies is a relatively new term, but its newness masks a history that it attempts to appropriate for itself in a new context of academic respectability. Before Mad Studies we had survivor history and survivor research, developed by survivors outside universities from the early 1980s. Survivor Research developed from a firm base outside universities to a firm base inside academia, without losing the relationship between the two. Survivor History appears to be firmly outside universities in England, but to have developed university links in Canada and Scotland.

Brenda LeFrançois says that Mad Studies is not about "academic or professional elitism". She says that it takes place inside and outside of universities. To David Reville this raises questions, as survivor activist in academia, about how you relate the two worlds. He says

"Find a way into the academy. Once you're in you have to find your way around. You have to bring Mad students and teachers in, too. Then you have to find your way back into the community again."

This is quoted by members of Edinburgh's Mad People's History (a community orientated group) who want to "keep the relationship between academia and the community alive".

WHAT IS MAD STUDIES? DOES IT EXIST OUTSIDE OF UNIVERSITIES? IS IT A THREAT TO THE SURVIVOR MOVEMENT OR AN OPPORTUNITY? DOES IT WANT TO SWALLOW US, CONTROL US, OR HELP US? IN WHAT SENSE OR SENSES CAN IT CLAIM TO BE A SURVIVOR VIEW OF THE WORLD?

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