“Awareness” of “Schizophrenia” is not the priority for ISPS Australia, the Australian branch of The International Society for Psychological and Social Approaches to Psychosis.
This week, ISPS Australia released a response to Australia’s Schizophrenia Awareness Week campaign: Schizophrenia Awareness Week – Drop the Label! (see full response here or at the ISPS Australia Facebook page). The collaborative effort was liberating for a group of clinicians/professionals and those with lived experience all working toward understanding and finding the meaning of a person’s reality through psychological and social approaches to working with ‘psychosis.’
ISPS Board member says Amanda Waegeli invites us to reflect on her own experience of the label of schizophrenia:
“Receiving a diagnosis of schizophrenia took my last bit of hope for my own recovery away from me. The people left in my life lost their ability to know how to best support me and the treatment options offered to me were reduced to only one option; high levels of sedative medication for the supposed safety of me and those around me. No one believed me anymore, no one listened to me anymore, no one cared anymore. When I managed to drop my own label, I found a strength within and was able to get good support from those who see me as a person. I found psychological and social approaches that helped me and supported my healing journey.”
As Schizophrenia Awareness Week (SAW) draws to a close in Australia, in the midst of an equally awkward Mental Health Month, I have been reflecting on the messages that are currently provided about schizophrenia in Australia.
In Australia, we currently prescribe antipsychotic drugs at a rate of around 30,000 per 100,000 people. We continue to develop ‘models of care’ in health systems that prioritize diagnosis and medication. The dominant discourse of clinician-assessed ‘risk’ for psychosis remains central. Based in decades-old theory, the labelling so often places the person with lived experience, the person who actually has the experience, as a person ‘needing treating’ and not a guide towards new understandings of human experience — not seeing the canary in the coal mine as someone who can identify the best chance to survive, but as a sacrificial entity when people decide to dig holes in an inherently unsafe human endeavour.
The response from ISPS notes that we “Support the aims of raising awareness about psychosis and dispelling myths associated with these experiences. However, we argue that the term schizophrenia is unscientific and stigmatising — it does more to harm than help to people who may experience these extreme states.”
The discourse of “schizophrenia awareness” campaigns positions medical ‘leadership’ in this pursuit of ‘fixing mental illness.’ Leadership here refers to experts-by-university-degree, rather than experts-by-lived-experience. This often blind acceptance of culturally accepted ‘knowledge’ by those who hold the power that comes with degrees, titles, and resources is at the heart of the stigma and discrimination that comes with the label of ‘schizophrenia.’
The “Drop the Label” response from ISPS identifies four elements that are specifically problematic in the language and label of schizophrenia:
- It denies the impact of trauma
- Hearing voices is a common human experience
- The label of ‘schizophrenia’ is incredibly stigmatizing
- The construct of ‘schizophrenia’ lacks a scientific basis
“Schizophrenia awareness week” (SAW) is a week run broadly by the old ‘schizophrenia’ and other mental ‘illness’ groups that came together many years ago to support people who were suffering from symptoms associated with psychosis. SAW began 26 years ago and this year continues to be supported through the Mental Illness Fellowship of Australia.
Throughout the week my reflections have been on the dichotomy of the doubtlessly well-intentioned but nonetheless stigmatising information that comes out of SAW. The list of questions on the fellowship website invites us to understand that ‘schizophrenia’ is linked to over ‘100 genetic tags’, comments briefly on environmental influences, and then returns to the 50 studies that have shown the genetic factors that supposedly contribute to the ‘illness’. This is all wrapped up in the invitation to “Do What You Can” if you know someone that is “in the dark about mental health.”
Perhaps well-intentioned rhetoric, but the language is filled with oppressive connotations. Including the word ‘illness’ frames the experience in negative terms and describing the stigma as ‘dark’ may have racial undertones and create less cultural safety for first nation people in Australia. Referring to the ‘dark histories’ of Australia brings to mind the violent history that first nation Australians have endured from invaders in over 200 years. The problems with using ‘dark’ language were skilfully pointed out by Dan Sultan on an Australian Q&A television broadcast concerning the Arrernte and Gurindji people in 2017. Indeed, Aboriginal Australians continue to be diagnosed with ‘schizophrenia’ at high rates, bringing with it the perils of the label.
I have considered the impact of the label of ‘schizophrenia and psychosis’ in my own medical records and in the lives of people I have the privilege to work with — people who are skilfully making sense of their own realities and journeys but suffer the stigma of the label. The term ‘schizophrenia’ is applied to their legitimate and very human response to their experiences. I remember the simple but not insignificant barriers that the label of ‘schizophrenia and psychosis’ has presented in my life many years after I left the mental health system. Going to University (six years after I left the mental health system) meant that I had to go through health ‘assessments’ that none of my student colleagues went through. When migrating to Australia, I had to ‘massage’ aspects of my medical records which left me feeling a sense of vulnerability, shame and dishonesty. Of course, there are the classic workplace questions, like “could this be about your past illness,” whenever I, the (former) ‘lunatic’ himself, seek to speak to the injustice of a modern mental health system as a mental health nurse practitioner.
On reflection, I am reminded that we might seek to identify the value of the canary in the coal mine and move away from labelling the canary as some sort of problem, instead seeing the canary as a beacon of light to help us move away from the danger of our folly in labelling human experience as ‘schizophrenia’.
Despite alternative spaces and ideas being present in some areas, the broad discourse of biological psychiatry ensures that the ‘schizophrenia’ label carries the full weight of stigma, marginalisation and ‘othering’ for many people who receive it. A label can only ever tell a partial truth, and on the journey of psychosis, the ‘schizophrenia’ label is stuck to a person. The label never did belong to the person who received it — it is a label that belongs to the person who bestowed it.
It really is time to drop the label of schizophrenia, and ISPS Australia invites us to consider doing so in favour of understanding human experience and removing the impediments to a person making sense of their experience. It also encourages us to reflect on how these impediments may themselves be a product of the primarily biomedical perspectives that continue to dominate the mental health systems. Schizophrenia Awareness Week supports such dominant attitudes and highlights the responsibility of organisations such as ISPS Australia to continue to push for everyone to Drop the Label!
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.