Wednesday, 11 April 2012

11 April 2012 - From Tokenism To Totalitarianism - On Being A Psychiatric Survivor Activist

Is the softly softly approach of service user involvement making a difference to the psychiatric system?  Like the drip drip of water wearing away stone.  Or does the tokenism continue to stifle and even suffocate the voices of lived experience in the totalitarian state of mental health service land?  "Do what we say or we'll restrain, seclude and forcibly treat you"

Sometimes it seems like I am the only psychiatric survivor activist in Scotland who won't conform to being labelled a service user or someone who used to use services.   In my opinion, a passive description of a shocking experience, when my identity was lost in a fog of drugged obedience, indecision, flatness and not knowing.  Recovery from being a service user was paramount, coming out from under the paternalistic wing of the pharmaceutical expert.  Taking charge of my own mental health in the face of disapproval and DSM-IV evidence of diagnosis.  Rejecting a lifetime of lithium.

Making a full recovery in 2005 and resisting involvement in local mental health matters.  Getting back into the real world of mad people where I fitted in perfectly.  Working full time and gaining another postgraduate qualification.  Enjoying being normal, having money to spend and people to network with.  Keeping an eye on the national and international mental health scene.

The peer support movement captured my interest, the empowerment and mutuality similar to the community development work I'd always been involved in.  I knew it had the potential to be a real catalyst for change in the psychiatric system.  Pilot projects in peer support were set up in Scotland but not in the area where I live.  So I set up Peer Support Fife in January 2008, so that we wouldn't be left out of this exciting development.  We initially tried to get funding for PS Workers, with no success, so I began to promote the model of PS locally and trained as a WRAP Facilitator.  And ran WRAP workshops in many areas of Scotland, starting with Fife in August 2008.  I'm used to running ahead and developing projects, with the wind at my tail.  But as I got more involved it became more difficult to be meaningfully involved.

It felt like I was being kept on the periphery of power, excluded from the inner circle.  The more I tried to be included the more I was excluded.  An expectation of conformity or of remaining on the sidelines, instead I came to fit the glove of a psychiatric survivor activist.  Didn't really choose it but did refuse to walk in the well trodden paths of user involvement and doing it as it's always been done.  I've never been good at falling into line and sometimes prefer falling out of favour.  Individualism rather than totalitarianism where the individual is assimilated into the collective body.

In Fife where I live there are the highest number of patients still living in psychiatric wards, as highlighted in the Left Behind, a report by the Mental Welfare Commission for Scotland on their visits to people with severe and enduring mental illness in 2011.  Concerns included locked doors, feeling safe, meaningful activity and physical health care.  The "outdated and institutional" practice of queuing for medication was highlighted, with recommendations for it to be withdrawn.  It still goes on in the acute psychiatric ward near me and means that there is no confidentiality regarding drug prescribing, with the patients being herded into line.  A ward where there is little meaningful activity except smoking with peers, no psychological therapies on offer and drugs the only option if in distress.

I'm disappointed with how the peer support movement is being developed or managed by government and mental health organisations in Scotland.  PS Workers on low wages who are expected to deliver recovery, build relationships, share experiences, many of them working in the psychiatric system with all its limitations.  An impossible job and yet many folk are keen to have a go.  But this doesn't make it OK.

I'd like to see survivor/peer led groups running peer support projects.  This happens outside mental health service land.  Where community groups rise up out of hardship and identified need.  In the 1980's, as my sons were growing up, I worked with others to develop playschemes, after-school clubs, youth groups in the community where we lived.  We formed steering groups and committees, raised funds and were supported by statutory agencies in our activism.  Why can't the peer movement in mental health be allowed to form its own roots and be supported in doing so?  An independent voice can be a powerful one, bringing improvement and change to services. What is there to fear in this?

The containment of the user/survivor voice involved in mental health service design and delivery mirrors the control in psychiatric treatment.  Exchanging one set of handcuffs for another.  "Goffman’s “Insanity of Place” explores the phenomenon of mental illness by asserting that it is an instance of havoc, a symbolic and practical condition that disrupts the social order of life, and one that must be contained." Black Hawk Hancock & Roberta Garner, 2011, Towards a Philosophy of Containment: Reading Goffman in the 21st Century.  The term 'total institution' was also coined by Erving Goffman,  where a person's self is mortified by a number of processes, deconstructed and made to conform.  Discharged from the institution and recovered from the mental illness should we accept being labelled as unpredictable and a risk to society?

In A Recovery Approach in Mental Health Services: Transformation, Tokenism or Tyranny?  Premila Trivedi discusses how recovery and other user experiences are "increasingly appropriated and adapted by the mental health system".  The flowchart, Table 13.1, demonstrates how there can be a takeover of user led concepts, reworked into a fitting framework that keeps the powerful in power, and the rest of us in our place.  Tales of tyranny, experience lived and systems thinking.

A person I know who managed to get out of the psychiatric system after many years of being an in/out patient said there was no use in trying to change it for it can't be changed.  I'm not of this opinion and think that the system has no option but to change.  It's inevitable.  Heraclitus of Ephesus, the pre-Socratic Greek philosopher and a pioneer of wisdom, was known for his doctrine of change being central to the universe - "No man ever steps in the same river twice".  And that there is an underlying reason to this, the Logos - the word, statement, law, account.  It makes sense then to be a psychiatric survivor activist, in the face of resistance, and to expect change.