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.
