Thoughts of Equality, Freedom and Justice on the Road to Activism

[on Mad in America 5 February 2014]

I’m a relative newcomer in the field of mental health survivor activism and human rights campaigning, although an old hand at resisting psychiatry and recovering sanity.  I suppose the lifelong experience of psychiatric treatment made me loath to get involved in the power struggles of what I believed was an oppressive system until I was drawn in by the peer movement with its potential to shift the paradigm and bring about real change.

For me to make a full recovery from mental ill health and psychiatric interference it required a critical mindset and an independent streak.  For others it will be different because we are all individuals and make our own way in life, if allowed to.  I like to run free, in my mind as well as in my body.  I don’t like swallowing pharmaceutical drugs although I can take a mild painkiller for a headache no problem.  

But having to take psychiatric “medication” was like swallowing mind-altering drugs and being brainwashed, losing my personality and what made me “me”.  If I’m feeling pain there is a reason for it.  Don’t force a painkiller on me until I ask for it.  Why should this request be unreasonable?  Putting a psychiatric label on me shouldn’t give anyone the right to coerce me into ingesting drugs that make me worse and take away my freedom.

In 2009 I reached a crossroads in my new life as a promoter of the peer support model and self management in mental health.  It came after a trip to the IIMHL (international initiative for mental health leadership) conference in Brisbane, Australia, with an exchange in Auckland, NZ, as a carer representative funded by Scottish Government.  [this year it’s in Manchester, England, 9-13 June]  I’d got the opportunity to take part at the last minute, after raising questions about the selection process of people with “lived experience”.  It seemed that my keenness was being rewarded.

There were various issues that arose during my trip that caused me when back home to consider giving up working in mental health and going back to what I was doing before, working as a lecturer or in community development.  By the end of 2008 I’d been getting excluded from Scottish mental health developments because of speaking out about inequalities or cronyism.  And I’d only been really involved since the January of that year.  I could see that my values, personality and life experience wasn’t going to fit well into the culture of the user movement in Scotland. 

I considered and reflected, wrestled with the thought that it wouldn’t get any easier trying to be “meaningfully” involved.  How could I thole (put up with) it?  I’m not a patient or tolerant person if faced with hypocrisy or ignorance, and don’t like being told what to do by someone with less experience or knowledge which happens more and more, the older I get.  But I couldn’t let go and had to keep going.  Why should I let myself be excluded and badmouthed?  Stubbornness won the day and I got back into the ring.

If I’d known what was ahead of me then I might have had second thoughts.  Just as well we don’t know what’s coming around the bend.  It’s been a rollercoaster of a ride the last 5 years which took me from peer support to writing, survivor activism and human rights campaigning in mental health matters.  I’ve had to  advocate for my sons in psychiatric settings, challenge forced treatment and mental health safeguards that aren’t safe.  Through it all there have been allies and antagonists, in equal measure, and I’ve developed a thick skin and a sharp tongue.  It’s inevitable in an activist role and I’ve come to accept it.

But I still have a hankering for the peer agenda and seeing the development of proper peer run crisis alternatives in the local Scottish areas.  Alternatives to clinical models of mental health and psychiatric drug “therapy” (an anachronism to my mind).  That’s why I got involved in the first place, to see changes, sea changes, paradigm shifts, people before systems, first do no harm.

It will require a taking back the power and not just empowerment, which is fine in the real world but not in the mad world of mental health where the softly, softly approach just won’t wash.  For who ever likes to give up the power they have so that others can have more power?  Let’s get real.  That’s not to say I’m advocating force or coercion.  Look what happened in animal farm.  It’s going to require a range of tactics for ensuring level playing fields and straight paths.  And ongoing adjustments to see that it remains so. 

Interestingly the more that I’ve got involved in activism the more that other activists have tried to influence my work or to have me join their cause.  It’s been like “give them an inch and they’ll take a mile”.  At times very irritating but par for the course, when people have been disempowered and believe that justice hasn’t been done.  I know what that feels like, the sense of injustice at human rights violations in psychiatric situations where complaints processes favour the professionals and the voices of the “mentally ill” are silenced.  By chemicals or notes or slanderous accusations.  And I’ve come to realise that being a writer, activist and campaigner in mental health matters is all about justice.

There will be justice … when those who are not injured are as outraged as those who are.” Thucydides

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Patriarchy, Infantilisation and the Blaming of Mothers

I’ve become very familiar with the characteristics and personality of the patriarchal system that is psychiatry.  “It’s a man’s world”  Where women are kept under control and men are treated like women.  Psychiatric drugs are the tools of choice and voluntary means detained if you refuse to go by the rules.  When mothers challenge the system and stand with their children, grown up or otherwise, there is a “divide and conquer” mentality, and psychiatric notes speak of difficult and demanding mothers, troublesome creatures who just won’t let the men get on with the job.  Of power, control and infantilisation.Image

The punishment for psychosis is a stigmatising label and forced drug treatment if non-compliant or resistant.  Never mind if the altered mind state was reasonable in the circumstances, a coping mechanism for dealing with trauma or body changes.  Daddy knows best.  Close your eyes, hold your nose, open your mouth and swallow the pills.  Or else.

I’d been in the habit of choosing the “or else” but in 2002 did as I was told and swallowed the pills, and was the worse for it.  I ended up having to swallow a lot of pills, anti-psychotics and anti-depressants, that weren’t “anti” anything.  In fact they made me more depressed, flat, humourless and obedient.  Good girl.  Then when I made a feeble protest at a psychiatrist appointment I was given lithium to “augment” the anti-depressant.  Daddy knows best.  Still no change, flat as a pancake, no singing voice, grey days.  Time for action but difficult to do when unmotivated and having got used to obeying orders.

Yet inside there was a rebel voice, a mother who would not let them get away with it.  The labelling, drugging and blaming.  Family history of.  It must be true, it’s written in the notes.  Well I’ll have to write my own notes, tell the real story, name and shame, as they have done with me and mine.  Let the battle commence.  But first I had to get out from under the mire of fatherly influence, brain altering chemicals and feelings of hopelessness.  That suck you down and make you conform.  I had to become my own woman again like at puberty.  Breaking free, on my own terms.

ImageYou see it’s easier to control the mad people if they become like children.  The difficulty is when they resist, refuse to obey and remain in their psychoses or mad states.  That’s when the schizophrenia label appears and remains in psychiatric notes to warn the world that this person is a troublemaker.  They won’t lie down and take it.  How dare they! We’ll sort them out.  With indelible labels and slanderous accusations wrapped up in medical jargon to fool the world outside the system.  Stigma will keep them chained.  Self doubt and shame will keep them silent.

But some of us won’t lie down or be quiet.  Our voices keep rising up, speaking out, whatever the cost.  Especially if they try it on with our children.  A step too far.

In 1982, four years after my first psychiatric inpatient experience, following what the psychiatrists called a “puerperal psychosis” due to hormone imbalance, I was invited to speak at a church event about how I came to faith.  Part of my story included running from the psychiatric hospital to avoid ECT, and then the escape from psychiatry by tapering and getting off the psychiatric drugs.  

At the end of my talk a woman came up to me and said she’d had many courses of ECT and was still under psychiatry.  She seemed OK about this and that somehow I was the odd one out.  Ar 30 years old I realised that my story of resistance was not “normal”.  In 1984 I had another baby, they were looking out for signs of psychosis and I ended up in the psychiatric ward only a day or two out of the maternity hospital.  Again I was forcibly injected with chlorpromazine, separated from my children, tapered the drugs within a year and got back on with my life.

In between this episode and my 2002 incarceration I had good mental health, no more babies (my husband got a vasectomy or I would have had a fourth child) and I supported other family members in and through psychiatry.  My mother, two younger sisters and my oldest son who had a breakdown in 1995 after leaving home to go to university.  My middle son experienced similar in 1999 after leaving home but I made sure to get him out of Fife and back to where he was living, in a different health board area.  I didn’t want a repeat of what had happened to my oldest son, physical injuries in the psychiatric ward, complaints made by me, attempts to label him, forced ECT and a critical incident.  The same ward I entered in 2002 and where my youngest son was an inpatient in 2005, 2008, 2010 and 2012.  Ending in psychiatric abuse and bullying of mothers.Image

I moved my mother to Fife where I live, in 1993, where she continued to go for her 3 weekly depixol injections until her death in 1998, a gentle woman who led an ordered life and did the best she could for her children.  The system now had our family’s psychiatric notes from mother to daughter to grandsons.  Family history of.  I believe this is why it was more difficult in 2002 for me to both resist psychiatry and to recover.  Fortunately my mother wasn’t around by then, for her sake, although I miss her a lot.  

Since I got my life back in 2004 I have continued to advocate for family members while also getting deeper into mental health involvement, activism and campaigning.  It’s not been easy, I didn’t choose to get involved but sometimes circumstances compel you to take a stand, to speak out and to resist.  There’s nothing else for it.