Monday, 24 February 2014

Meaningful Involvement, Psychiatric Survivor Activism and Human Rights Campaigning

Looking back over the last seven years or more of trying to get meaningfully involved in Scotland's mental health world, as an "expert by experience" and a carer of sons with bipolar disorder labels, it's been a whirlwind affair of swings, roundabouts, snakes and ladders.  At first it was about joining in with the emerging peer support (PS) developments through Scottish Recovery Network (SRN), after attending their 2005 conference in Glasgow ‘Celebrating and Developing Peer Support in Scotland’.

By late 2007 I had designed a draft unit descriptor on PS, together with a senior lecturer at a college near my home in Fife, for training people in peer support, and had given a copy to the SRN Director.  And then I trained in WRAP (wellness recovery action planning), becoming a Facilitator in June 2008 under the leadership of the Copeland Center's Stephen Pocklington at an Edinburgh course.  Following this I started delivering WRAP workshops, along with a co-facilitator, in different areas of Scotland, under my own steam, with no support from SRN.

I had twice tried to get a place on the Scottish peer support training courses in 2006 and early 2008, masterminded by Penumbra (who manage SRN), and was unsuccessful, while latterly setting up a voluntary organisation Peer Support Fife in Jan08, to promote the model through workshops and events.  By the summer of 2008 I found myself becoming something of a square peg in a round hole, being excluded for not conforming, particularly to do with SRN events.  Which was ironic, considering I'd shared my recovery story on their website in 2005, updated it in 2008, and this was the gateway through which I'd got involved in mental health work in the first place.

I'd always believed in recovery from mental illness/mental health issues since my first foray into and out of the psychiatric system in 1978, and practised it again in 1984 and 2002 when I was forced to submit, for a period, to taking psychiatric drugs.  The labels had no power over me so I resisted and recovered when the time was right, and didn't look back. Therefore it seemed fitting for me to be involved with SRN, considering my life experience of mental health recovery.  However I wasn't prepared to compromise or conform in order to be one of the gang.  I was 55 years old and had lived a life, and expected recognition for this.  It wasn't to be and I wasn't going to fall into line.  And so began my journey, by way of resistance, from peer support to activism and campaigning.

I suppose that the Scottish Recovery Network has always been an arm of the government although it had been developed and planned by people with lived experience.  I knew this because I'd seen the 2004 founding document about the proposed network, given to me by a Fife grassroots project which had been involved in the earlier stages.  It was inevitable that the recovery movement would be hijacked or taken over by the powers that be.  They will see it as a matter of keeping balance between the oppressors and the oppressed, psychiatry and the psychiatrised (patients, service users, survivors, carers).  Although I now believe that psychiatric survivors are the key component in restoring balance to a system that is out of kilter.

For as long as psychiatry has existed there have been psychiatric survivors.  People who didn't believe and escaped, who might have believed for a while then got out, or who stayed in the system, didn't believe but swallowed the drugs in defiance and played the system.  Others didn't survive.

I didn't plan on becoming a psychiatric survivor activist.  It was the human rights issues and abuses in psychiatric settings which propelled me into the role and now fits me like a skin.  It's a continuous irritation, the thought of human rights abuse going on behind the closed doors of psychiatric institutions.  As a young person I was aware of my mother resisting psychiatric treatment and then had to go through the same myself after childbirth, twice, being forcibly injected in the rear, leaving the hospital with numb hip muscles as a reminder.

At age 50 in 2002 I swallowed the pills under coercion, detained under the mental health act, leading to a cocktail of drugs, suicidal impulses and clinical depression.  I eventually got out from under, the only scar now showing is due to the 6 inch metal plate inserted in my leg.  Bone loss following maximum doses of venlafaxine, resulting in 3 fractures to the fibula when walking down stairs, after a job interview in Cupar (Fife) library in 2005 (was hired).  I got off lightly and don't walk with a stick.  The weight training and swimming in my 40's probably helped.

I decided in 2011 to become more meaningfully involved in national mental health groups from the survivor and carer perspective, and committed myself to travelling distances to have a voice at the table.  Different disciplines and settings, including a crisis and acute care network steering group where I was the only person not paid, an expert by experience.  Then at the end of 2011 my youngest son began to be in crisis and couldn't access any support, resulting in his having to go to the police for help.  By February 2012 my son was a detained psychiatric patient subject to dehumanising treatment and I was his advocate.  And at Christmas 2012 my middle son arrived back in Scotland in crisis, requiring psychiatric treatment, in a different health board area, and I had to advocate for him at clinical meetings, mental health tribunals and to ensure a smooth transition from hospital back into the community.

During these two years of advocacy, activism and human rights campaigning I kept up my involvement in the crisis network and other meetings, speaking out about issues and concerns.  I was invited to give a presentation at a conference last October in Stirling and did a toned-down talk based on my experiences of being a carer in two different health board areas, advocating for my sons.  This resulted in the "naming and shaming" of me in the conference feedback and workshop I facilitated.  I was singled out in both, the only person to be targeted.  I resisted on the day and because I wouldn't lie down and take it I was picked on by a psychiatrist.  

Of course it's all my fault, I'm to blame.  They're going to look for other service users and carers to be involved on the group.  Which is fine with me.  I don't accept the labels, "rude", "aggressive", "failure" or "schizoaffective disorder".  Sticks and stones may break my bones (or venlafaxine) but names will never hurt me"  They might be painful at the time, but only a spur to action and campaigning, is how I see it.

In conclusion, I have found involvement to be meaningless in Scotland' mental health world if a person is a psychiatric survivor activist and human rights campaigner.  The powers that be are fine with the recovery agenda if they are in charge but they are not keen on survivor action which pays no heed to labelling and stigma (naming and shaming).  I recovered by taking charge of my own mental health and going against the guidance of psychiatry.  I did it under their gaze and keep writing about it, as if rubbing their nose in it.  They won't be happy.  I'm fine about it.  Real life isn't always about happy endings.


  1. (((Chrys))) stay strong my friend. While we breathe, we fight on, in hopes of better days! Maz x

    1. Thanks Maz! All the best to you and yours too, Chrys


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