Julie McNamara - Insanity Fairm Mental Heath Page

Mental Health Conference
Good Health Wanganui, New Zealand May 11th & 12th 2004

MAKING A DIFFERENCE
Julie McNamara

What has made a difference for me?

It is often hard for professionals and carers within the Mental Health Services to step back and hear how it is from perspectives outside of their specialist training or particular world view. It is perhaps more difficult to listen to the perspective and challenges presented from 'a patient', from someone whose life has been driven by the lived experience of mental distress or psychic pain and the many routes towards a sense of well-being.

I am asking that you indulge me for a while, suspend disbelief and explore the possibilities in addressing those challenges together, as a team. That means acknowledging each other's humanity, setting aside our prejudices and fear of each other across that fragile divide that separates those of us who seek help and those of us who feel we are offering help within the current Mental Health services. This brief paper will explore the following ingredients along the road towards that land we call 'recovery'.

Firstly, please let me introduce myself. I need to give you a cultural backdrop, a picture of where I came from or else the following speech may seem more alien than ever. Some of you may feel squeamish about patients speaking on International public platforms, it is therefore most important that I try to put your minds at rest, for a while at least…

I was born in Merseyside, England in 1960 of Liverpool Irish stock, born of a Catholic and Protestant inter-marriage. Those of you who are unfamiliar with that part of the world may need to know that most Catholics and Protestants of Irish stock remain in a wary relationship, fresh from war, carrying the wounds of 600 years of British Imperialism on that small island. My parents were ahead of their time, refused to collude and simply lived their own way. They rebelled and didn’t marry until I was reaching puberty. But the loss of respect from their communities, their loss of culture and belonging has left its legacy on each of their children. I am the one who has chosen to speak out. I bear the scars in public. Let’s just say I have learned the skill of surviving in hostile environments.

Am I well then? Says who?
I have been a psychiatric patient for most of my adult life. Almost as soon as I left the area where I was raised I found myself at odds with the cultures and systems around me where I did not understand the rules. I went to university, bright kid, lots of promise…but one of my first tutors stirred my interest and passion in politics when after my first ‘presentation’ he asked: ‘How did you get here?’ I knew he wasn’t asking which bus had I arrived on! I didn’t last long there. That sense of alienation precipitated my first mental health crisis.

That was then…I have had a chequered past and that has led me here…as a Gay woman or a Lesbian, I have always been an outsider amongst outsiders. Please don’t panic. Do not rush to lock up your grandmothers, your daughters or your sisters. My sexuality is not the issue here. Indeed I believe homosexuality was removed from the list of psychiatric disorders in 1992? I am quite at home with my sexuality but I am a Celibate Lesbian in Transition. You can call me Clit for short. But I digress. I know some of you will be busying your minds trying to place me within the diagnostic table of psychiatrists’ security blankets, ‘what label would I give her?’ but I ask you to suspend disbelief for now…I will answer any questions you have at the end of this paper, so if any bets are to be placed on which particular horse I’ve ridden, place them now. But be cautious; remember you will rarely get six psychiatrists in one room agreeing on any diagnosis.

In December I was told that my treatment at the Maudsley hospital was ending as I was clearly ‘much better’. But it really wasn’t clear to me at all…as I didn’t experience life to be or feel ‘better’. I was perhaps beginning to thaw, beginning to feel the agonising realities of traumas I had shelved much earlier in life. I was actually feeling paralysed with fear and swamped with grief. Life events from my perspective had left me bewildered and bereft. With closer questioning at the service, I discovered that treatment was ending because funding had run out, and the entire culture of treating patients on a one-to-one basis had changed. In short, it was possible to move me on because I was functioning.

I am hoping that one day I will understand what ‘much better’ means.
Clearly the definition of ‘well-being’ or ‘feeling better’ was in this case defined by over-worked specialists in the context of a treatment centre flooded with people desperate for support. I would have felt better if they’d shared their grief with me at having to move people on because of finances and the culture of change under a political regime led by TONY BUSH! Sorry that joke is culturally specific. But then, so is our Prime Minister back in his Great British Empire.

I did not ‘feel better’ because I was still overly attached to the senior clinician running my treatment who was, as far as I was concerned, supposed to take me home and look after me for the rest of my unnatural adolescence! I had informed her I was a foetus in adult clothing. Was I not honest enough? Did I not make my point clearly enough?

Whose Recovery is it?
I am laughing at myself as I present the sorry story for your edification, but maybe it would’ve helped if I’d been allowed to feel the thaw first and define for myself what ‘better’ feels like in my own experience of the world. I ask you to ask yourselves with regards to your own practice:

Whose recovery is it?
Who is defining reality here? Is the person whose life you are intervening in on board with you? Are they party to the decisions you are making?

When you are making decisions and intervening in people’s lives, try and put your self in their position. Every time you write out the case notes, imagine your name in the place of that person you’re writing about. Ask yourself if you can still live with what you have written. Only when you feel comfortable with what you have written can you truly say that you are working in partnership, walking alongside somebody in distress and perhaps, making a difference. If you find it too hard to imagine your name in that person’s place, better still, get your patient to write their own contribution!

I know that we are all confined by the constraints of the work cultures in which we operate; we are also confined by the poisons of Western culture, hell-bent on productivity, industry, the accumulation of wealth and the ‘Survival of the Fittest’. But let us for a moment, remember our humanity…we are reasoning animals. We remain by and large social beings in search of companionship. So don’t be afraid of becoming an ally, working in partnership with the people in your services whose reality is being challenged and who have been defined as ‘ill’. They may well be feeling isolated and ostracised already, without you distancing yourself further because you wear the shoulder pads of power. The casting-out of our communities those people who we deem are ‘unfit’ to participate and the enormous stigma attached to using mental health services is probably the most damaging part of the process of any so-called mental illness and recovery.

You want to know what works for me? Common courtesy! Talk to me. No matter how far removed from your reality you experience me to be, I am still in here somewhere, Talk to me! No matter how busy your work load might feel…Fuck the paperwork today. Talk to me!

Somewhere deep inside the anguish I am looking to be held…but don’t touch, maybe I’m too raw right now.

Talk to me! I need to know I’m still here...I’m still alive, and that there may be the possibility of a hearing. Remember many of the people you work with inside the mental health services have been incarcerated without trial or jury. All I ask is that you remember that, even when it seems that someone is lost beyond repair. If I am lost, I must still have my dignity. At times when I have lost sight of that myself, one of the most important gifts from another human being is that they have held onto that basic respect for me, that they offered me dignity.

Dignity
I want to give you something that I have held onto from the moment I first read it in 1992. This piece is from Saul D. Alinsky’s ‘Rules For Radicals’:

“We learn when we respect the dignity of the people, that they cannot be denied the elementary right to participate fully in the solutions to their problems. Self respect arises only out of people who play an active part in solving their own crises and who are not helpless, passive puppet-like recipients of private and public services. To give people help, while denying them a significant part of the action, contributes nothing to the development of the individual. In the deepest sense, it is not giving but taking their dignity. Denial of opportunity for participation is the denial of human dignity and democracy. It will not work.”

Power and Participation
What would it take to include people in designing their own care plan? People who have been in distress need time, patience, careful listening to what they need to work towards recovery. What would it cost you to step aside and allow people to lead their own recovery? People need acknowledgement that circumstances have changed, but people can be encouraged to turn distressing experiences into positive action. We all need to feel that our opinions are valid.
Put your fears aside…Be Flexible! Be Honest! Be prepared to be human!

I was in an East London Hospital not so very long ago and I was appalled at the lack of hygiene when food was served. The food served on the ward was diabolical apart from certain food which was brought in on a tray from the local Halal Restaurant. I noticed that that food, prepared for Muslim patients, was always covered. It arrived in a sealed container. So I put my name down for Halal food. I insisted that I would only eat Halal. My choice was about hygiene. But I ended up serving another three weeks inside because some professional witness there on the ward thought that I had delusions. That diagnosis was simply made from a student nurse’s observations. Nobody ever asked me personally why I would only eat Halal food, which was a shame really as I’d have answered them. They may even have begun to notice the state of the food dished up to people on that ward. And what that experience tells me is that if there are any light-skinned Muslims on that ward who have not identified their cultural origins on the records, they must be doing long hard time in that institution for no good reason!

All I am suggesting is that you do not make assumptions.
What changes would you need to make to ensure that people are more involved in planning their recovery when they are at their most vulnerable? Now, I have had people say to me, well sometimes it really isn’t possible to get the patient’s views because, quite frankly they are ill. Well I am taking a risk and saying to you that even when somebody seems absolutely ‘barking mad’, there is meaning in their madness. It IS a difficult task to try and interpret somebody’s ideas, thoughts and wishes when they may not be in the same shared reality as you are used to, particularly if they are a new patient, but you must try, and if they are known to you, you can and must intervene on their behalf.

I was part of a movement in the UK called Survivors Speak Out. We introduced the idea of a Crisis Intervention Card which contained all relevant numbers and instructions if someone was found in a mental health crisis. We created a card for people who are regular recipients of the services to identify the people that they would choose to be informed and involved in the management of their distress. That card carried indications of which medication worked and was preferred, which friends, allies or relatives should be informed in a crisis as opposed to the designated ‘next of kin’ in law (Mental Health Act 1983 etc.) But the crisis card had to be backed up by a ‘living will’ created with a solicitor, particularly if it gave named people financial control or ‘power of Attorney’. I believe you call this whole procedure ‘advance directives’?

In the absence of such a system in place, find out what people need. On a simple ward round ask what it is that people require? Go and talk to people, but make sure that they are awake or at least emerging from the medication if you truly want their opinion. And if you don’t, then be honest with yourself, don’t bother people when they’re trying to sleep!

Choices and Rights
In a context where you may not have thought so, all those people you think of as outsiders, strangers to your way of life, every being with whom you work has human rights. Even if local and National legislation or in the case of New Zealand, Government treaties do not often reflect this.

What works for me?

Plain talk. Common Sense. Common Courtesy.
Look me in the eye. Treat me like a human being. We may not agree. We may not even like each other, but we know we’re both alive. We can respect our differences.
Information. I want to know as much as you know about my case. In my language. No jargon please. I don’t need the horror stories created in your creatively written case books, but I do need to know what decisions have been made about my life as a consequence!
Privacy. A quiet place for discussions. Time and acknowledgement that life is not an easy roll.
Time. Time for assessments. Time to talk.
Time to inform me of my choices regarding medication and information with regard to alternative treatments.
Careful explanation of the impact any chosen medication is likely to have on me.
End ECT (Electro Convulsive Therapy) as a compulsory treatment in psychiatric settings.
Ensure that women have the option to be treated by women staff at every level of treatment, preferably in single sex wards.
Ensure that all services are culturally sensitive to the people it is serving. Respect each individual’s cultural origin. Yes, I am talking about class, spirituality, language, race and religion. But I am also asking that you open your thinking to embrace Disability culture, Queer culture, (Lesbians and Gays have cultural norms and sensitivities too!)
Celebrate difference and diversity and open up your platforms of power to include Directors, Leaders and Managers as well as lower tier staff from every culture in your communities. Don’t just open up the serving posts, the domestic staffing levels and feel you’ve done your bit! You can tick that box!
Wherever possible, try and treat people in their own community. Recovering at home may not be an option, but a crisis house in the locality is far better than the hospital setting.
Wherever possible, Remove financial barriers e.g. expenses/or transport to get to the clinic or hospital for treatment. (Why is it still perceived as the patient’s ‘stubborn refusal to join treatment programmes’ when transport costs have not been put into the equation?)
Political action! Every human being has a right to be heard, to be valued with respect and dignity. I began to grow into who I am and to value myself when I was actively contributing to the community around me. You can connect people to their own power by reconnection to their communities and where that may not be possible, to a wider picture or sense of community through political movements.

Participating in the moves towards radical change in the Mental Health Services has helped me enormously. I have had to challenge enormous stigma and unravel the disintegration of self esteem and self respect that comes part and parcel with a psychiatric history. I joined Survivors Speak Out and campaigned for change. I campaigned vociferously to try and put an end to compulsory Electro Convulsive Therapy. I worked for Survivors’ Poetry as a workshop leader in hospitals and hostels. I joined the Steering group of Women and Mental Health UK and worked towards an end to mixed wards and re-instatement of single sex wards in hospital settings. I joined London Disability Arts Forum and created a Disability Film Festival with Caglar Kimyoncu, my colleague and dear friend. Often we forget to mention the people on our journeys who have helped to make a difference. Caglar Kimyoncu is one of those people. He remains an inspiration to me.

Wishing on the Moon

Sometimes I despair. I feel that the world I dream of living in is far removed from the prejudices and oppressive structures of the societies I’ve witnessed and lived in. So I’m asking you to imagine with me. Create the vision. In dreaming we can begin to create the shared reality of a fulfilling future, for all of our communities, diverse as we are, sharing this planet together.

I speak on every public platform I’m invited to, write essays, theses, chapter and verse. I am determined to challenge this ludicrous divide between those of us who seek help and those who offer help within the mental health system. That is why I am here today, speaking on this platform, to challenge the culture of fear around mental distress, to appeal for change.
Let’s work together!
"Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has." Margaret Mead (1906-l978)

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