Editor’s note: This is the first of three installments telling of Annie Chapman’s “Hikoi” (traditional Maori march – or journey – of protest), undertaken to raise awareness of those drawn into a “a paradigm that has lost heart and wisdom and moved several light-years from the basic tenet of medicine: ‘First do no harm.'”
Day one in my job in supported accommodation in Porirua.†
I am completely overcome with the sights, sounds and smells of despair. For those that society has apparently no wisdom or will to genuinely help, all that is on offer are small mountains of medication. The multi-colored pills that the clients tip, either with resigned compliance, resentment, oblivion or a changing mixture of all three, into their palms from the hygienic, “responsible” pharmacy blister packs – which in turn are stored in a steel, locked cash-box, which we, the support workers, handed them the keys for. Most of the people I supported were under the Mental Health Act, which means they had no choice about taking these harsh cocktails of powerful medications: no choice about whether to take them or not and certainly no choice to have any other treatment.
There is such a disconnect – an absolute disconnect – between the ideals of the organization I worked for (“Supporting people to live their dreams!!”) and the day-to-day reality of supporting people whose lives are dominated by the effects of psychiatric medication, that just getting out of bed in the morning feels like a major feat, let alone remembering what a “dream” felt or looked like. But as if to placate the conscience there is a multi-disciplinary team of registered health professionals: social workers, occupational therapists, and a nurse. And Healthy Life-style Coordinators.
But with medication at the centre of “treatment”, I couldn’t feel that there was any significant benefit in any of these. Again, it felt like a disconnect: as if great intentions and fine principles are espoused and probably genuinely felt at the “top” of organizations, and even in the fine-sounding blueprints written for policy re: mental health and addiction services, but over-medication is the elephant in the room that nobody seriously wants to look at. One could even wonder if it has become a sacred elephant: one whose presence can’t be questioned, no matter what the drawbacks and risks.
I wanted to run, considered a number of plans for jumping ship, but chose the stability of my relationship with my partner over these other plans, and succumbed to the financial necessity of staying in the job.
After a few weeks, I developed a genuine fondness and peculiar respect for this varied bunch of interesting and troubled folk. Where initially it seemed any sort of meaningful contact was impossible, I would slowly feel trust and rapport building; slowly develop the means to respond to apparently bizarre behaviors; gradually, seemingly unreachable people begin to respond to kindness. People who it seems had always had everything in life against them, some having encountered the most unimaginable horrors a human being could be subjected to, and now to live a drugged half-life as the final outcome of all their difficulties. The desperate unfairness and profound sadness of it opened my heart and gave this work meaning; to try and serve them with care and understanding to the best of my abilities.
It also put my own petty woes and self-concern into a new perspective. Having said that, it is not an easy domain to keep light shining in. There is a profound darkness and despair that would sometimes overcome my best intentions, and leave me deadened and aching for the shift to end.
I feel somewhat ashamed, in retrospect, of things I failed to speak out about at the time…
An older Maori woman who respectfully and politely requested her psychiatrist for a reduction in the dose of her anti-psychotic, and the psychiatrist threatened to increase her dose if she asked again…
Seeing doses increased to dangerously high levels in another client for what seemed completely unnecessary reasons…
Seeing the crazy cocktails of drugs given to another client, prone to agitation and delusions, including prednisone for a physical problem, prednisone being known to induce psychosis….
The G.P. who had “forgotten” her patient was taking anti-psychotics, even though she had been on them for years…
I am not saying that any of these people whose actions I describe are “bad” people, or that the organization I worked for is fundamentally unethical. The system, because of how it has evolved, naturally invites this sort of insensitivity and disconnection between ideals and actual treatment of human beings.
All the above scenarios were perpetrated by people on enormous salaries, people with long years of training working within a system that has gathered momentum in a medication-orientated, profit-driven direction. Simple human common sense and “fresh eyes” revealed unmistakable symptoms of a paradigm that has lost heart and wisdom and moved several light-years from the basic tenet of medicine: “First do no harm.”
There is a power dynamic in Mental Health which does seem fundamentally unethical. No human being should have as much power over another as psychiatrists do. One decision by a psychiatrist; to give a person the diagnosis of schizophrenia and place them under a compulsory treatment order, can absolutely alter the course of a troubled-but-promising gifted young life into a hellish, over-sedated, broken half-life with little prospect of true recovery or any real meaning – in terms of either activity or relationships – for a person’s lifetime. I saw the results of this diagnosis and treatment in Porirua – in older clients who had been in the system for much of their life – and it was almost unbearable to see the younger ones arriving, knowing that almost certainly their fate would be identical, and to always be asking myself “What could their lives be or have been if they had had the right wise help and better choices at the right time?”
On the Hikoi I met several families who had retained a caring role for family members with this diagnosis and treatment and it was heart-wrenching to feel the predicament of an anguish-filled, lifelong responsibility for a life that once held such promise.
I am not saying that medication is never helpful, but given the extremely serious side effects of many of the psychiatric medications (especially the neuroleptics), it seems that any ethical, medically sound best practice would be to use them extremely judiciously. This would also surely include an intention to reduce or eliminate at the earliest possible stage, with the best support possible to make this likely to be successful. This is unless the user themselves, with fully informed choice decides that for them the benefits outweigh the risks.
Another source of subtle shame in retrospect was how I allowed my “lowly” role as a support worker to disempower me as a human being; how little I ever took my concerns beyond endless discussions/complaints to other support workers, many of whom had similar (if not quite so strongly felt) concerns to mine.
In fact it was realizing that this endless complaining and criticizing, while feeling utterly powerless to change anything, was doing me harm and making me a victim of the system as well, which finally spurred me to act.
I remember the moment clearly. Dec 2011, the day before my birthday, I had driven one of the clients to her day program, and was driving back to the complex. Never normally a radio listener, I had switched the channel to National Radio and caught an interview with Geoff Chapple, regarding the official opening of the Te Araroa trail. Geoff Chapple was the man with the vision of a walkway through the whole length of New Zealand, and was also the main driving force (over fifteen years!) in transforming the vision into a reality.
A powerful feeling flowed through my whole body, a full-hearted, deep-bellied desire to “Hikoi” – to walk the North Island trail, and walk it to raise awareness of the need for alternatives to this system that I was so reluctantly working within.
Incubating the Hikoi Vision
My life has been littered by half-baked impulses of one kind and another, so initially I myself had some trouble trusting this bold new vision. Initially I only mentioned it to my partner and one other close friend. (I think my partner, having been in close acquaintance for four years with all the characteristics of my being, simply thought the plan completely nutty, though he didn’t quite say that!)
I celebrated the 2012 New Year at a retreat centre and voiced my intention regarding the Hikoi to a small group of friends, and felt I had etched a solemn contract into my heart, having brought its tender shoots to the light of others in this context.
The remainder of the summer was rich and varied with plentiful time in nature, and my first visit to the ashram of a Spiritual Master, New Zealand born Sri Yanchi-ji, who I feel privileged and also radically challenged to be in the company of when I can.
Returning to the Kapiti coast in early February, I began gathering my inner and outer resources to birth the Hikoi. I brain-stormed with a small group of friends, I met up with Hugh Norriss from the Mental Health Foundation, and Gary Platz from Wellink Trust. I was still lacking in self-belief, and would sometimes shrink back into a sense that maybe it was just a ridiculously naive notion to think that a Hikoi could have value, but the feedback from both Hugh and Gary reassured me that they both saw it as a valid and timely response to issues that are all too commonly swept under the carpet. They lent me books by Robert Whitaker, and John Watkins from Australia, both of which reinforced what had been my intuitive response from day one of working in Mental Health.
I composed the Kaupapa (purpose/intention) document, with a view to sending it out to my networks and discovering what support there was for the Hikoi. Several months of writing and re-writing in my spare time; contacting organizations who I thought might be interested to support the Hikoi in some form; friends editing my document and discussing the issues and new insights arising all the time; much email discussion and sharing of information with Adrienne Giacon from Hearing Voices Network N.Z.
In early October I realized that the document was as complete and well-edited as I was capable of, so the next step was sending it out to ascertain whether people would support me financially to walk. There were days I felt tempted to abandon the whole project rather than ask people for financial support, but the only way to discover if there was sufficient support was to ask, so I did, and I was astonished by the generosity of response: the Hikoi at this point began to have a life of its own and somewhere deep in my belly I knew that life wanted this of me. I had reached the point of no return.
Physically I had no idea how my 55-year-old-body would stand up to a six month walk carrying a pack through unknown conditions (As Yanchi-ji, so characteristically put it: “you can’t know for sure that you’ll make it, your feet might fall off!”) and I was in complete denial as to the full reality of what I was taking on.
The impulse to do the Hikoi was beyond logic or reasonable argument, and I simply had to trust the impulse; that life (made flesh and blood in real people) appeared to want to support me to do it, and the other more mysterious forces that seemed to be afoot surrounded the vision with strength and light.
†(Porirua is the satellite city to the capital Wellington, where the main psychiatric hospital of the lower North Island used to be situated, so it still houses many “consumers”, now living out in the community, either in supported accommodation, or various tenancies).