Saturday, 29 June 2013

Community and Hierarchy, Speaking Out and Being Silenced, on the Road to Activism and Campaigning

First edition cover
"All animals are equal but some animals are more equal than others" from Animal Farm by George Orwell, an allegory of oppression, propaganda and tyranny.  It's also described as dystopian with characteristics of dehumanisation and totalitarianism.  Where a revolution results in the gradual replacing of one dictator with another.  A favourite story of mine since studying it in English class at secondary school in the 1960's.

I've been considering how I got to be an activist and campaigner in mental health matters, from the psychiatric survivor perspective, when I'd originally only got involved to promote the peer support model in the mental health setting, at the beginning of 2008, by setting up Peer Support Fife.  Then in the April of that year joining with the recovery movement by organising Celebrating Recovery in Fife, sponsored by Scottish Recovery Network, over 120 delegates attending.  However I soon found myself becoming a member of the resistance movement, straitjackets appearing in the attempts made to silence my voice.

I remember a fellow participant saying I was "scary" at the WRAP Facilitator training in June 2008 and was mystified because it's not something I'd been accused of before as a community development worker or in other settings.  A friend and ally said it was because I wasn't afraid to run with stuff, take risks.  I began to see that the mental health world had a different mindset to other communities of interest.  It felt like school or church, institutionalized thinking, something I'm not very good at, and the temptation to challenge or cause mischief is irresistible, especially if the leadership is authoritarian or appears weak and indecisive.  It's been my experience that hierarchical shenanigans abound in the mental health user movement as if perpetuating the psychiatric system's patriarchy or control.

It wasn't long before I realized that the peer support agenda was being assimilated into services rather than being an agent for change, which is why I'd got involved in the first place, having believed the blurb about people with lived experience having a voice and making a difference.  Silly me.  Maybe it was happening somewhere else but it wasn't happening where I live and I wasn't convinced it was that much different elsewhere.  The balance of power continues to be weighted in favour of the psychiatric system and government with professional service users making up the threesome.

I began to run local events on user involvement with the aim of encouraging people to speak out collectively, in community, and these were mostly attended by people from outwith my local area.  In October 2009 we had over 80 attending the United We Stand user and carer networking event.  Mary O'Hagan, NZ consultant and thought leader, came twice to Fife, in May 2010 and March 2011, leading workshops on service user participation and leadership.  Other events followed with involvement themes, in my attempts to stimulate local activism and collective voices nationally for psychiatric system change, alternatives for people in mental distress.  Finally I invited Bob Whitaker to give a lecture in Cupar, Fife, November 2011, having travelled to Ireland in the February to hear him speak.  Then 2012 was the year of taking a stand with my son against psychiatric system abuse in the form of restraint, seclusion and forced treatment.

And so I became a fully fledged blogger, psychiatric survivor activist and campaigner, speaking out against forced treatment, the psychiatric drugging of women and children, ECT and brain surgery for mental illness.  At the same time a carer and mother of sons in the psychiatric system.  Being warned by high heid yins not to speak out about psychiatric situations as it could affect their treatment.  Told to shut up and go to bed by fellow activists.  Systematic exclusion from WRAP and Peer Support developments since 2008 was particularly irritating as I'd been at the forefront in promoting ideas.  And still I wouldn't conform.  I've always been non-conformist or non-compliant, according to the psychiatric system.  It's why I survived and recovered.

June 26th was the UN International Day in Solidarity with Victims of  Torture and also my mother's birthday.  Over many years from the 1950′s onwards she was a psychiatric inpatient and outpatient, forcibly treated following ‘nervous breakdowns’. With many courses of shock treatment, locked in, drugged and latterly voluntarily going for a depot injection in the community, every three weeks, until her death in 1998 aged 68.  Despite this she was a gentle woman, did the best that she could for her family, lived a productive life and died peacefully.  I remember her with gratitude and believe that she didn't deserve the treatment she got in the psychiatric system.  There has to be a better way, a paradigm shift.

Tina Minkowitz, attorney and psychiatric survivor, Mad in America blogger, highlights human rights abuses in psychiatric treatment and that forced psychiatry is torture: "We are the ones who call for an absolute ban on forced psychiatry.  We are the ones who say, it is torture if it happens without the person’s own free and fully informed consent – that force is not only whether they hold you down and inject you but also what the neuroleptic does to you inside your brain and mind, even if you took it in your hand and put in your own mouth because you knew what would happen if you didn’t.".  I agree.

It's now midway through 2013 and I continue to support my sons in their recovery from psychiatric treatment, advocating as necessary, standing in the breach, giving peer support.  Writing and blogging are great ways of speaking out and resisting the straitjackets.  I don't mind the risks and welcome the challenges.  There are times when I have to withdraw from hierarchical groups where critical voices are silenced.  But opportunities have developed in national mental health group settings for speaking out and being heard that are more about community.  I am committed to being optimistic about mental health improvements and psychiatric system change.

Sunday, 23 June 2013

coming off psychiatric drugs

Mad in America has a new Directory of Providers for psychiatric drug withdrawal, see Matthew Cohen's post, also reflections from Laura Delano on her work in developing the list.  A useful tool for people in the USA who are considering a future free from psychiatric medications and lifelong mental illness labels.

In 1970 when I first engaged with the psychiatric system, visiting my mother in a locked female ward at Murray Royal Hospital, Perth, I remember thinking firstly that there must be a better way of working with mentally distressed women and secondly that I'd never be a mental patient.  Well I ended up a mental patient on three occasions (1978, 1984 and 2002) and I still think there has to be a better way.

On the first occasion, 1978 after childbirth, I had decided in my mind that one year was enough on psych drugs and so I started to taper the chlorpromazine towards the end of the year, and did the same after the 1984 episode.  I didn't ask the psychiatrist's permission.  Both times it was easy enough to do so and I wasn't held back by health professionals.  

The 2002 episode was more difficult because of the psych drug cocktails, tying me into the system.  I eventually managed it although escaping with a schizoaffective disorder indelibly written in my notes.  Found this out years later at an eye clinic appointment, made attempts to get it erased but to no avail.  Subjective psychiatric opinions stand even if incorrect and give rise to lifelong mental illness labels.

I've never liked taking psychiatric drugs as they take away my decision-making abilities, my sense of humour and my personality, as well as making me depressed.  I didn't appreciate being forced to take them.  And I don't appreciate the use of, and 'need for' ECT (twice as many women get it), or brain surgery for mental illness.  The fact that people, and women, ask for it, doesn't make it right or OK, to my mind.

I'd like to see more support in Scotland for people coming off psychiatric drugs and for this to happen I think there will need to be alternative ways of working with people in mental distress.  Not just biomedical models of mental illness and lifelong prognoses of disability but consideration of recovery for all.  A radical step and one which I took many years ago, being non-conformist in everyday life and therefore non-compliant in systems thinking.

Here's tae us, wha's like us!

taking the psych drugs when detained in 2002 after going in voluntarily

A short post about my acute inpatient experience in Lomond Ward, Stratheden Hospital, in 2002, following a menopausal psychosis at age 50.  

I had been working full-time as a manager in the voluntary sector, in my home town of Perth.  It was a temporary post, and an enjoyable one where I did a variety of jobs, including independent advocacy for people with disabilities and in the psychiatric system.  There were challenges in the post, including a bullying situation that had been going on for some years in the workplace and resulted in workers going to the union and getting the main bully dismissed.

There were also challenges to do with a family member who became mentally unwell and was hospitalised.  But the main trigger was the hormonal changes occurring in my body as I transitioned between childbearing years into older age.  This caused me to move into a sensitive phase, described as 'psychosis' by psychiatry, where everything sensory became acute.  Visuals, hearing, smell, thoughts.

My sons were concerned because I wasn't 'myself' and took me in their car up to Lomond Ward which is just up the road.  I went in of my own volition.  I knew I wasn't well.  Took a look round the ward and women's dormitory, overlooked by male patients in single rooms.  I decided to leave.  Whereupon I was told that I was on a 72 hour detention and had to take the 'medication'.  Previous inpatient stays meant I knew that if I didn't swallow the drugs then I would be forced to take them.  So I swallowed them under compulsion.

I didn't want to take the drugs, the anti-psychotics make me clinically depressed, and so they did.  However I wasn't 'psychotic' so was released after about a week, depressed and flat, and it took me a year or two to summon up the strength and resilience to take charge of my own mental health, taper the drugs, resist the labels and recover.

Saturday, 15 June 2013

what's happened to independent advocacy?

I've now had experience in two health boards, of family members in psychiatric inpatient wards, and have found that the independent advocacy is either ineffective or non-existent.  What's happened?

In Fife the advocacy, in our experience, wasn't either independent or effective in standing up to human rights abuses in locked wards.  Circles Network based in Warwickshire, England, manages the Fife project.  Difficult to get an appointment, someone to attend an important meeting.  Then when you did get someone they weren't effective in helping the patient speak out.  It's like they were standing with the funders, the system and the loudest voice.

In Dundee there seemed to only be collective advocacy in the wards where discussions could at times be overheard by anyone in the next room.  So much for confidentiality.  No sign of individual, independent advocacy.  In fact a nurse said to me that they could advocate for the patient.  I tried to explain the importance of an independent voice but not sure if the concept was understood.

No carer advocacy at either place and as a carer I ended up having to advocate in the clinical meetings, representing their views, finding out what the issues were, making sure their voices were heard. 

I was an independent advocate in Perth back in 2000-2 and remember it as an important role where I had a range of 'partners', including a male patient in a forensic locked ward.  Having an advocate made a difference to all the folk I worked with, helping them to speak out, challenge issues and influence situations for the better.

I'm hoping this isn't a trend in Scotland, that independent advocacy is becoming less important and therefore less available to locked in patients and others with particular issues.  There will always be a need for independent advocacy, to uphold the rights of people in the psychiatric system.  But the people need to know their rights and be informed about the importance and availability of expert, independent advocacy.

The best advocacy I've witnessed in both areas has come from solicitors at mental health tribunals where they have represented accurately and consistently the views of the patient.  This is the quality of advocacy I would like to see available through the independent advocacy projects.  It could be achieved through the provision of a national training programme and quality standards.  

I'm thinking it's another case of postcode lottery in Scotland's mental health world.  Whereas I'd rather have consistency in practice and provision, good mental health services in every health board area.  Independent advocacy available to locked in patients, people labelled with a disorder, and their carers, of a high standard, monitored and evaluated.  To ensure that human rights are upheld and voices heard.

Tuesday, 11 June 2013

pecking orders and perches aren't for me

Having a moan:
I do get fed up with the hierarchical shenanigans in the world of mental health activism and have to say it again.  The slippery pole of success where some folk think they are looking down on the rest of us from their perches of supposed superiority in an empire of their own making.

It makes me very annoyed when other survivors think they can tell me what to do or give me a telling off.  I didn't like it back in the primary school of the 1950's and I like it even less now.  The cheek of it.  Folk younger than me or with less lived experience.  As in teaching a granny how to suck eggs.

As a community worker since 1980 it was always about equality, empowerment, everyone being the same, worker and member, paid person and volunteer.  Why should the mental health community be any different? 

Monday, 10 June 2013

this is for your own good - bend over

I just can't be reconciled to the psychiatric system's use of, and mental health act's condoning of, compulsory treatment, rapid tranquilisation, grabbing and jagging. 

The use of force or threat of force, to compel a person, detained under the mental health act, to be compliant and take the medication

It wasn't good for me, I didn't like being forcibly treated, there has to be a better way.  That doesn't involve human rights abuse.

In my opinion.

Wednesday, 5 June 2013

the pitfalls of social networking - guidance based on something that happened today

Don't use Facebook for announcing successful business deals funded by statutory agencies without first making your posts private to friends only.  

Especially not if the deal isn't finalised and hasn't been announced by the statutory agency.

Even then it's best not to use social networking for business unless you are an independent worker and it doesn't matter if you put your foot in it and make a fool of yourself.

Remember that not all Facebook friends are your real friends.  Think of them as make-believe friends if you like.  Or fair weather friends.  Whatever you say may be used out of context and could be an embarassment.

If you are bothered about your reputation then think of social networking tools as a useful resource for finding out stuff about other people while being very, very careful about what you write or comment on or repost or like. 

You could also use a false name, a profile photo of an animal or of yourself twenty years ago when your hair was a natural colour.  Be cryptic in your comments, lay false trails, cover your tracks, watch your back, keep folk guessing and only play Facebook games.  

Otherwise just take a risk, let it all hang out.  You might get away with it.

Tuesday, 4 June 2013

great stuff, awfy braw!

I remember reading oor Wullie in the Sunday Post, 1950's/60's, and in Christmas annuals, identifying with his getting up to mischief, being the leader of a gang and not liking school rules.  And my dad was called Willie and his dad Willie, and in his writing of Jeff Hawke for the Daily Express.  Although I thought he was a journalist and used to tell my friends this, because he worked for a newspaper.

I wanted to write this positive post, like an oasis in a desert, about things I'm involved in, interesting developments where my voice and experience are appreciated.  I'm not going into detail but it's encouraging for me to work with allies in different settings, mental health and otherwise, where I can speak out and not be silenced.  It's more like the world I was used to before coming into mental health activism circa 2008.

So here's tae the folk who know my worth and value my voice.  It just shows that you can't keep a good woman down.  And here's to blogging and social networking, great tools for speaking out and being in control, and the information highway, the internet where anything can be found if you keep on searching.  

Great stuff, awfy braw!