As the UK Schizophrenia Commission works towards its 2012 report on Schizophrenia in England, Australian poet, editor and community educator Sandy Jeffs, author of Flying with Paper Wings: Reflections on Living with Madness, reflects on how attitudes to schizophrenia have changed during her lifetime:
Schizophrenia, you have schizophrenia. Shit, schizophrenia, this sounds serious but what is it? At 23 I was still naive and even though I had been a university student I had not encountered schizophrenia in friends or relatives. I sat bewildered in the psychiatrist’s office perplexed not only by my inner psychotic confusion and but wondering what was to become of me. It later became clear that such a diagnosis was seen then in 1976 as a virtual death-sentence. With each ensuing psychotic episode I was to recede into unreachable madness with little prospect of recovery. And to me this seemed plausible because I was terrorised by persistent voices that were telling me I was evil, caught up in bizarre delusions, visited by the Virgin Mary and a hag who kept appearing to me in the mirror. The menacing outer world was bombarding my unfiltered inner world like a battering ram. Suddenly I was taking drugs that made me restless, shake, dribble, constipated and pace the floor. I was ashamed of myself and felt a failure for having let this happen. There was a disquieting invisibility about being a mental patient; no one talked publically about having schizophrenia. Why would one; we were the dross of society, the hopeless, the useless and the forgotten mad who were locked up in a loony bin.
What had caused my schizophrenia? Was it my violent parents or my lesbianism? Was it a personal weakness? Was I too sensitive to the world? In 1976 the medical model of a biological cause, of chemical imbalances in the brain, was becoming more accepted. It didn’t blame me, my parents or circumstances for my schizophrenia. It gave me comfort that I was mad not bad, and a hope that I could be helped by medication. This became my narrative, the story I told myself to understand my wayward mind and incomprehensible behaviour. It was also the narrative of my memoir Flying with Paper Wings: Reflections on Living with Madness, published in 2009.
Since then my narrative has been challenged by a rapidly changing and much more politically complex mental health world. I was attending conferences where the medical model was deconstructed brutally, consumers were rejecting the illness model and calling themselves voice-hearers, postmodern theory was melding with queer theory and morphing into mad theory. Schizophrenia has always ignited passionate defence or criticism as to its appropriateness for the condition it tries to describe and here I was in a whirlpool of theory and paradigm shifts around this enigmatic experience that has been my life for 35 years. The idea of ‘mental illness’ has an awful pessimistic determinism which for some people is an unacceptable burden. Perhaps by constructing my life around my schizophrenia I have accepted that burden too easily. But I am not just a voice-hearer. I fall into billowing psychotic fantasias that are also full of delusions, paranoia and visual hallucinations. My mind seems so fragmented at times that I feel like I’m trying to catch the fragments in a butterfly net as they flutter in the sky. How do I make sense of this in the midst of a so many conflicting theories? I am left with questions. I am unsure of my relevance to the mental health world as an advocate and wonder who I am speaking for when I am in my public persona. It was simpler 25 years ago. Our mission was to ignite compassion, understanding and respect for the mentally ill by talking about the ‘lived experience’. Now, the ‘lived experience’ is not a consistent one of illness but of many different interpretations of one’s emotional experiences often with political agendas.
Challenges to the medical model are not new, and I too have been critical of its neglect of other holistic aspects of our lives. My mantra to psychiatrists is: you can medicate the brain but you have to talk to a mind. In the end I do lean towards the idea that I have a mental illness but I have a profound disappointment in the treatment offered by psychiatry. It’s time we accepted that the second generation of antipsychotic drugs have failed to live up to the fanfare they were heralded in with. Like many of my mad friends, after living for so long with this hellish illness, I am frustrated by my continuing struggle with it. But a way forward is not that clear in a world where there are many voices with many different messages. The question for me is: if this is a post schizophrenia world, who is my authentic self and do I have the courage to be true to her and resist the plethora of voices?