So there I was, some 16 years or so since I last heard voices that were labelled as psychosis, and then I had another experience. I heard my name being called out from a street cafe… I couldn’t see anyone attached to the voice.
Having had a look around from where I was standing, I slowly took a few steps backwards towards the cafe, just to see who it was that had called my name. Alas, I could not see who it was.
What I did notice is that all the people in the cafe had appeared not to notice my name being called out. Fortunately, I was not overly concerned but perhaps a little surprised by this clear and concise calling of my name.
As I walked on, I heard the voice again. The voice was familiar, and this time I was able to put a name to the voice. When I realized who the voice was, I became unconcerned by the voice being present and continued my way.
The explanation for hearing the voice last week outside the cafe is quite straightforward and does not represent anything unusual or concerning: I had been awake for 36 hours and had spent the past 12 hours in a highly significant, humbling and deeply humane relational and emotional reality. But what if I had not been able to make sense of such an experience? What if I could not make sense of the experience of hearing the voice (especially as the voice was actually comforting given the previous few days and weeks)? And, what was the relationship between the voice I heard this week and the voices I heard all those years ago… if any?
The reason this experience interested me so much is due to a number of factors, not the least of which was my personal journey of working in mental health environments that have the biomedical stamp all over them. Choosing to stand up and speak out with alternatives to the dominant discourse has come with considerable attack, allegation, agitation and threat. I have been subject to countless statements about my supposed lack of understanding, my actions increasing risk, nonsense about being “anti-psychiatry,” nonsense about being “anti-medication”… the list goes on. This kind of vulnerability is of course not a new experience for people that have spoken out before me. But it is unfounded and rather unpleasant for me, and sadly speaks to a dominant discourse that is not founded in science, compassion, humanity or dignity, but using power as an apparent ‘truth.’ The fact that I have lived experience is broadly accepted in the public mental health system where I work. The sad reality, however, is the prejudice and stereotyping that lies dormant, except for the odd occasion when people cannot contain their underlying views that a person who has previously been psychotic, diagnosed with a disorder, might just not really ever be okay. These stereotypes do inform the views of workers. More concerning is the potential consequences of the stereotypes if I returned to being the objectified voice-hearer once again.
So, is my past experience of being diagnosed, “treated” and then moving on a concern? Perhaps it is if we take the reductionist, bizarre, often disempowering and offensive position that we actually know why any person becomes psychotic (without any genuine evidence), and even worse that we can actually cure the so-called illness. In this milieu, my past experiences almost certainly contribute to and inform the lazy assumptions made by professionals as they comment and inform their often unfounded utterances to colleagues in response to the recovery-orientated and trauma-informed views I express. And of course, my voice-hearing experience last week could easily and comfortably contribute to the unfounded reductionist position as an example of my “vulnerability” as a formerly psychotic person.
The labels that come with the prejudices such as my “anti” positions are certainly evidence of the view that health professionals and other professionals with lived experience might not be quite okay due to their past “illness.” But some evidence at least can give us another clue: I could be considered more healthy precisely because I am “anti” over-prescribing and drugging human beings that are experiencing a state that is contrary to the “normal or healthy” that is accepted by the custodians and collaborators of the dominant discourse. I could also be considered “anti” psychiatry if that means speaking out against oppression and “treatment” of individuals without giving honest, clear and at least partially scientific explanations for “treatments” and diagnosis, that can, in themselves, cause significant harm and distress. I could be considered “anti” something or other if that means raising concerns about the supposed “80%-90% success rate” of ECT that has often been reported to individuals and families on numerous occasions as part of convincing them to consent to ECT, or speaking out against CTO’s that have no validity in addressing the intended purpose, but do remove certain human rights and disempower the choices of an individual.1
I could be considered “anti” something because I raise concerns over the use of polypharmacy and high doses of drugs that are at best useful for some people and at worst contribute to physical health problems and early death, as well as having a significantly harmful impact on people’s quality of life. And, I could most definitively be considered “anti” the three monthly injections of antipsychotics or even the proposed Aripiprazole tablets that contain a sensor so that professionals can monitor ‘adherence’ to medication.2 Finally, I could be considered “anti” for being aghast to read the antipsychotic prescribing rates in and around the community in which I live. In Adelaide, the prescribing rates for antipsychotic medication was recorded by the Australian Commission on Safety and Quality in Health Care3 as being around 30,000 prescriptions per 100,000 population. To be dispensing antipsychotic medication at this rate is a concern. Either a third of the population is on antipsychotics or there are too many people taking a lot of these drugs — neither of which is safe or justified, unless of course there is nobody left with “psychotic” realities in Adelaide. Which is clearly not true — I know this because I heard a voice talking to me at a cafe the other day.
So, when I reflect on the experiences of hearing a voice call out to me, in the context of recent and current events, I do wonder what on earth we might mean by the generic and broad term “psychosis” that we apply to the legitimate and real human experience that is felt and lived by so many people.
When I heard a voice speak to me last week, perhaps I was experiencing a response to significant events — the voice was a way for my mind to intentionally contain a confusing personal event or experience. With that in mind, I am confused how the use of the term “psychosis” would be of any value. Of course, in this instance I would not tell the story of my reality to a person that would label it as psychotic (unless they are reading this), and for many, the brief experience I describe would not constitute psychosis. But even that is fairly arbitrary and undermines much of the apparent specialist knowledge of those in the mental health field that talk with certainty and carry out coercion when asserting their perhaps well-intentioned, but incredibly unsubstantiated, description of a person’s reality. A description that may well lead to well-intentioned but potentially harmful “treatment.”
And finally, I reflect on the joy of hearing that voice, the comfort of whom the voice represented and where I was when I heard the voice. I reflect on the value to me of hearing that voice. But most of all, I reflect on the difficulty and challenges that may have arisen if I was not comfortable and confident in accepting the common human reality of hearing a voice following a stressful, emotionally and life-changing experience.
This reflection does not feel “anti” anything despite pointing out certain aspects of people’s experiences that I find difficult to accept, and questioning the ethics of enforcing or over-“treating” people who could very well be experiencing voices or other alternative realities as a meaningful and valuable message or metaphor related to significant life events.
Fortunately, I was able to find gratitude for that part of me, or the emotion within me, that offered me comfort and connection in providing a voice to represent the significance of an experience, and in doing so allowed me to have a final moment with a wonderful friend who had just passed away.
Many years after battling through the challenges of being a psychiatric patient who first heard voices and later celebrated voices not being present, last week I found myself feeling whole and grounded in the common human reality of hearing voices and the connection the voices offered to understanding how much an event and a person meant to me. My reflections have crystallized for me the imperative to create safe, compassionate spaces and relationships to accept and explore voices and other common human realities. These spaces could be intrapersonal or interpersonal, spiritual or other relational realities of healing and safety. So, I find myself embracing the voice I heard last week with gratitude, and taking inspiration toward creating humane and compassionate spaces inside me, to explore and make sense of important and powerful experiences as a legitimate human reality. As a professional, I am grateful for the powerful reminder that hearing voices is something to embrace and support, which includes identifying and putting aside my own prejudices and stereotypes in accepting the person as a unique and equal citizen in the world and espousing a renewed commitment to facilitating safe and compassionate relationships.
I used to be psychotic and then I heard a voice again… and it helped me a lot.
- Burns et al, 2013 – http://dx.doi.org/10.1016/S0140-6736(13)60107-5 ↩
- Masand, Han, & Pae, 2016 – http://www.tandfonline.com/doi/full/10.1080/14737175.2017.1287566 ↩
- https://www.safetyandquality.gov.au/atlas/atlas-2015/ ↩
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.