Monday, 7 April 2014

Reflections on Scotland's Re-Founding Anti-Stigma Campaign Event 3/4 April 2014

Last week I was a participant in the 'see me' now (#seeme14) anti-stigma campaign, "re-founding" 2 day event in Dunblane, Scotland, which was advertised as a "Movement for Change" and wanted people who were "passionate about challenging stigma and discrimination" to join in.  

I couldn't resist and put my name forward for a place, not expecting to be invited, yet I was.  And so I went along with my critical hat on as usual, expecting to be challenged and hoping not to be bored.  I find that these days life is too short to be putting up with dull affairs or hierarchical shenanigans.

I'd been asking around before the event, to find out who else was going among the allies I have in Scotland, people of like minds who if all else failed then at least I could pass the time of day with them at the tea-break or lunch time.  It seemed that not everyone had got a place and on the opening first day we heard that the event had been oversubscribed and that we were indeed the "chosen ones".  I looked around the hotel conference room and saw about 70% or more were women, and when I asked about this later was told that yes more women had applied to attend although they'd tried to encourage more men to apply.

arriving Thursday morning at Dunblane Hydro
Many of the folks attending were staying overnight at the hotel, part of the deal for taking part, although I preferred to drive home on the Thursday evening, after dinner, to sleep in my own bed.  I knew fine well that if I spent too much time in everyone's company I'd be even more intolerant on day 2 of the proceedings.  

For it's been over 6 years of trying to be meaningfully involved in Scotland's mental health world that has tried my patience and given me a thick skin, having to resist what I see as cronyism and conformity with its resulting exclusion and scapegoating if not falling into line.  And I've never been very good at falling into line, doing what I'm told for no good reason except to be popular.  I'd rather be an outcast.

I'd come to the event with a certain level of skepticism about a social movement happening because they were announcing it.  In my experience social movements are grassroot uprisings of dissatisfied customers and collectives who are not prepared to put up with any more nonsense (or stronger word).  As a community worker since 1980 this is the very soil in which I've worked and lived.  In ex-mining communities and council house (social housing) schemes where we started up projects ourselves in response to local need eg playgroups, youth clubs, visiting the housebound.  We got help from statutory agencies in the way of resources, training, funding, information, and set up the systems to deliver the service.  As volunteers we put our whole hearts into it because it was in our community and would benefit all of us and others too.

The #seeme14 event had a focus and foundation of "people with lived experience" and the majority attending fell into this bracket, confirmed by the voting through electronic button devices on tables.  These devices were useful at some points but at others I got fed up with the choice of answers on them eg what animal would you describe something as (can't remember what).  The choices available weren't ones I would have chosen so I ended up not doing the button-pushing by day 2.  The novelty had worn off.  So I gave my button device to someone else so they could have two goes at it.  Same with the raffle ticket for winning a night at the hotel.  It felt like being at a bingo tea or outing for the elderly.

I'm a psychiatric survivor activist and human rights campaigner so the term "people with lived experience" doesn't really do it for me.  But that's OK if other folk are happy with it.  However some high heid yins at the event on the Thursday weren't happy with the blogging I'd been doing that mentioned them.  I engaged with one of them in the passing and they were annoyed, using words like libel, to which I responded, daring them to sue me, to take me to court.  As an unpaid carer living in a council house I've got nothing to lose except the clothes off my back.  My dander was up.  I'd been bored with the table task where we'd had to sit writing stuff on bits of plastic in the shape of leaves, and welcomed a bit of debate.  I knew it wouldn't be long before the straitjackets were out.  Another guy got angry with me when I wouldn't agree with his viewpoint.  He must have been bored too with the leaf writing.  But no excuse to take it out on me.

The leaf writing stuff was about getting people's views on this and that, so as to collate them in an action plan for taking forward.  It was described as an engagement tool, involving everyone equally but I thought it favoured the writers among us who could speak at the same time, like me.  Therefore it wasn't really an effective inclusion tool.  That's one of the reasons I got bored with it.  While I wrote ten leaves others were still getting round to writing their first one.  It was an unfair advantage and I couldn't just sit there waiting for everyone else to catch up. Patience not being my strong point.  So I went on a wander and a sparring with objectors, tweeting and checking Emails on the way.

view from hotel window at tea-break
The Dunblane Hydro hotel sits on a high vantage point looking over the countryside so it was a restful venue at the refreshment breaks, a chance to catch up with folks and to make new connections.  This for me was the highlight of the 2 days, the networking and sharing of stories, at the breaks, workshops and tables.  Despite the tasks set for us and the hierarchical shenanigans of some high heid yins there was time to engage and connect if you resisted the other pressures and were persistent.

I participated in the "re-branding" workshop which was a positive affair led by skilled facilitators (makes a change) and discussions at my table helped to shift my perspective about past achievements of the 'see me' campaign, of which I've been critical.  I could see that their work with volunteers has had a positive effect.

‘see me’ Scotland postcard ‘Crowd Surf
However I am keen that iatrogenic stigma, the labelling and disabling of the "mentally ill" by psychiatry and mental health services, should be a focus of the future Scottish anti-stigma campaign.  Society hasn't been the main culprit in my experience of naming, shaming and blaming.  Providing you keep quiet about any mental illness labels and only share with people who have insight.  

It's in the psychiatric setting that my family has been discriminated against in the main because of the biomedical model of mental illness tying us to lifelong prognoses and disabling drug treatment.  Some of us didn't believe or accept the labels and made our escape.  Others of us stayed in the system or services and lived with the effects of medication/psychiatric drugs.  Each to their own but for me it had to be a breaking free when possible.  I am very opposed to coercive psychiatric treatment and drugs being the only tools of choice for people with psychoses or altered mind states.

Prof Alan Miller, Scottish Human Rights Commission, addressed us on the first day, topic of 'Human Rights Based Approach in Mental Health'.  He spoke of the move in services from a needs to a rights base, from systems to people, and that with the Scottish Independence Referendum happening in September there was more of a focus on values, integrity and dignity.  Prof Miller mentioned Scotland’s National Action Plan for Human Rights (SNAP), "a roadmap for the realisation of all internationally recognised human rights ... based on evidence and broad participation".  I had submitted an individual response to this plan and have participated in collective events also.

A thought-provoking question was posed to Prof Miller by a fellow participant:

"Trying to get hold of human rights is like trying to get a grip of a handful of steam.  In the North Sea I worked with Louisiana oil men who used to say: 'When you're up to your a@s in alligators it isn't the time to be draining the swamp'.  Why is it so difficult in today's Scotland when having experience of mental illness to access your human rights?".

I don't remember the question being answered although I do remember Prof Miller saying something about "capacity".

In conclusion, having gone to the #seeme14 foundational event with a critical voice and a skeptical view I came away from it with a mixture of feelings and thoughts that, after a night's sleep, surfaced as seeds of hope that change is possible.  Because of the people with lived experience, the psychiatric survivors, who throughout the 2 days told their stories and shared their experiences.  And I was one of them, in solidarity.

There was equality despite the hierarchy.  There was a unity despite the differences of opinion.  Voices were heard despite the silencing that went on.  I look forward to seeing what develops in Scotland, from the grassroots, in the movement to make straight paths and level playing fields.  Meaningful involvement of people with lived experience.  The potential is there.  The challenge will be in the doing of it.

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