The voice of the mad in the literature on madness has long struggled to compete with the clamor of the âprofessionalâ voice. At least since 1908, when Clifford Whittingham Beers wrote A Mind That Found Itself,1 the consumer/survivor voice has been vetted, restricted and sanitized by the governors of the dominant academic paradigm. Even Beersâ book, widely praised at the time and still in print today, was accepted only because it was a certain type of consumer narrative, not at all representative of the broad diversity of experiences. In 1908, psychiatrist Adolf Meyer praised A Mind That Found Itself, writing that:
[âŚ] it has nothing in common with the frequent attempts at revolutionary disclosures by ex-patients who carry a chip on their shoulder and have had the most detrimental effects on legislation and on the attitude of the legal profession and the public â detrimental to the great majority of patients while perhaps a protection for a few greedy for special rights.2
This blog, 110 years later, written by âex-patientsâ with chips on their shoulders who are greedy for special rights, is an âattempt at revolutionary disclosureâ to highlight how some things have not changed since then. There are, of course, many changes. The profile and credibility of the consumer/survivor movement has grown since the early days of the psychiatric survivor movement in the 1960s and 1970s. The clearest examples of this are legitimate and growing roles for consumers/survivors as service providers, academics, advisers and educators. Another important example is the growth of Mad Studies (LeFrancois, Menzies, and Reaume 20133), an emerging discipline rooted in lived experience conceptualizations.
Despite these advances, the consumer/survivor movement has not kept pace with other rights movements which emerged during the same counterculture period, such as LGBTIQ rights or womenâs rights. Almost invariably, consumer roles sit at the lowest paid rungs of mental health, government and policy organisations. The issues at the heart of our work, such as equal rights and freedom from violence, are as distant as they have ever been. At the base of these ongoing issues of equity is the fact that power in mental health systems, including in academia, is held by a privileged few. The attitudes and beliefs of those in powerful roles continue to dominate, and to exclude critical voices or differing epistemologies.
This will not be new information to the readers of this blog and can be seen merely as a symptom of the way in which madness narratives are constructed by the psychiatric profession. Psychiatry is, as Ingram describes:
[âŚ] remarkably closed, and indeed almost hermetically sealed. Psychiatry assumes it has a fundamental right to pronounce on just about everything: on law, on sexuality, on school shootings, and so on.4
This âhermetical sealâ extends to the research arm of psychiatry, which has increasingly come under fire for how it consistently excludes people who do not fit the dominant narrative, or who do not support the dominant narrative, from discussions about psychiatric practice. The orientation of psychiatry is profoundly âprofessional,â a discipline which has settled comfortably into its claim to be able to determine the existence of an objective reality, and one which will tell a person, to their face, that their experience is not true, not real, and not valid. That this underlying sense of a superior grasp of truth extends to the gatekeepers of psychiatric literature is only to be expected.
As with the rise of the consumer/survivor movement in policy and practice, the âinclusionâ of the consumer/survivor voice in research has been gradually increasing, albeit with significant resistance, tokenism and co-option.
Our recent experience of attempting to publish with Australasian Psychiatry highlights the barriers that still exist, with that esteemed publication refusing to publish our short letter unless the lived experience was shorn from it.
The Article We Were Responding to: âHip Hip Hooray, ECT Turns 80!â
In February of 2019 we became aware of the article âHip Hip Hooray, ECT Turns 80!â (Clarke, 20195). Clarkeâs article aimed to provide a history of the use of Electroconvulsive Therapy (ECT) in Australia.
We had several concerns about the article, including:
- A lack of evidence provided throughout the article. These include claims of âsocial and political forcesâ restricting ECT, the âdisastrousâ âAmerican experienceâ of restricting ECT, and Medicare data, all without references.
- The quality of the article took a polemical tone. The language above demonstrates this, as did the fact that the author was able to introduce claims about the efficacy of ECT in the abstract, introduction and conclusion, but they were never addressed properly in the body of the article.
- There were significant gaps in this history. For example, reference was made to an Australian Royal Commission (Australiaâs highest form of investigation or inquiry) into the use of âDeep Sleep Therapy,â and how it led unnecessarily to the restriction of ECT use in Australia. The author failed to mention the profound human rights abuses, including patient deaths, and lack of oversight unearthed through this Royal Commission that motivated increased regulation (see more: Walton, 20136).
- The article positions ECT almost as though it is a person, while ignoring the views of people who have experienced adverse effects. For example, Clarke describes âmore restrictive ECT legislationâ and goes on to claim that ECT is a âstigmatized treatmentâ that âwill continue to come under attack.â These are highly subjective claims which illustrate a perspective that disrespects consumers, human rights, and the lessons of history. The legislative controls described, of course, do not exist to protect the (nonexistent) rights of medical technologyâthey are about the rights of human beings. The legislation aims to reduce restrictions on peopleâs liberty and increase the likelihood of people making informed consent about what happens to their own minds and bodies. It is concerning to us that the article appears to privilege a treatment over people, and, by implication, to privilege the freedom of psychiatrists to do what they wish over the rights and freedoms of their patients.
- Most concerning to us was the lack of inclusion of lived-experience voices. While many may find ECT helpful and life-saving, there are as many who disagree and find the treatment invasive, injurious and traumatic. This trauma is exacerbated in the context of compulsory mental health treatment. We took issue with an account of ECT that had no people in it.
Our Commentary
We provided a commentary to the journal to promote academic debate. While we had several concerns, our commentary focused on the lack of lived experience voices in the article. Noting the mixed experiences of ECT, one author, Indigo Daya, offered a personal account:
I had a series of 12 ECT treatments in the early 2000s. My suicidality largely lifted, but within three months my depression and voices returned worse than everâand many of my memories never came back.
If my psychiatrist had asked how I felt about the ECT in the weeks following treatment, I probably would have said âthank youâ. But if heâd asked me after six months, I would have been furious, demanding to know how he could have put me through such a violation. But he didnât ask.
My outrage about ECT continues today, almost twenty years later. Eventually I would experience recovery, but not because of ECT or other psychiatric treatment. I had to distance myself from the mental health system and then access talking therapy to process the childhood abuse that sat behind my distress (something no psychiatrist ever even asked me about).
We noted that this would be defined as a âclinical successâ by many psychiatrists (and perhaps by Dr Clarke), highlighting the gap between lived experiences of ECT and the clinical aims by some psychiatrists.
The Reviewerâs Response
The journalâs reviewer provided the response a month later. There were some valuable points. However, there were several inappropriate comments. We quote them below:
The main point of the letter is to critique Dr Clarke for failing to give space to the anti-psychiatry movement, and the anti-ECT lobby in particular. This anti-ECT bias is disguised in this letter as being about providing a consumer-led or lived experience viewpoint about ECT
The expression of such opinions is perfectly reasonable in a website blog, and would likely gain publication by the Church of Scientology, but do not really have a place in a scientific peer reviewed journal.
We were shocked by this response. We each have lived experience and a range of perspectives on ECT and psychiatry. What we authors agreed on was the need to include the voice of people with lived experience.
Our Unsuccessful Attempts at Resolution
Despite being concerned by these comments, particularly given the disclosure of traumatic experiences, we were still keen to work towards a solution with Australasian Psychiatry. We contacted the editor to discuss these concerns, noting:
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That we would still like to submit our commentary and were willing to discuss how to do so. In response the journal stated that it would only include the commentary if the first-person perspective was removed. The reason given was that it was opinion and not objective, like the original article.
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That the reviewerâs comments were not appropriate or scholarly and they should have been vetted by the journal. In response the journal stated that, in their view, the reviewerâs comments were scholarly and communicating points of disagreement. There were no concerns with the reviewerâs comments.
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That this could be an opportunity for the journal to learn and develop systems for respectful inclusion of lived experience voices. This included offering to meet with the reviewer and others. In response, the editor indicated that they would talk to the reviewer but that this was âdragging it out a bit.â
We agreed that our commentary would not be published at Australasian Psychiatry, given that our main aim was to elevate lived experiences of ECT. The whole process laid bare the unequal treatment between the original author and the lived-experience commentators. One personâs opinion (without references) was taken as authority, while the others werenât. The only difference was that one person was a psychiatrist, and the others had lived experience. It highlighted that for consumers, people with lived experience, survivors, the mad, there are serious barriers to participating in academia, and that gatekeepers still hold significant power over the distinctions between experience, opinions and facts.
With few further options, we write on this platform to raise awareness, promote dialogue and find solutions. This is a valuable case study of the issues in academia. We want to discuss some ideas for finding a pathway forward.
Researchers Ceding Power
In academia, health systems and broader society, we are benefiting from an increasing awareness about the need to share power when it comes to gender. Recent debates about âmanels,â discussion panels made up exclusively of white men, are an example of critical debate about power and exclusion.
The mental health system and its knowledge-power apparatus is like few others. No other health specialty has a human rights movement as large, organized and persistent as mental health. If nothing else, this is a clear message that all is not well. Yet any movement toward sharing power with lived experience is lagging far behind progress in power and gender.
We need to see this same level of debate and commitment about authentic inclusion of consumer/survivor voices. And for its benefit, the mental health system needs us. Together, we need epistemic justice.
We argue that the mental health system, including its academic disciplines, cannot advance without lived experience inclusion.
What would this look like? We argue that inclusion is never more than tokenism until power is ceded. That is more than rhetoric. Itâs about more lived experience voices, more engagement with those voices, and more action on the basis of those voices.
Do We Want a Seat at This Table?
For many years, consumers have argued for a seat at the table of power. We have believed, falsely, that once our truths are heard they will be believed and respected, that systems will begin to change. Reality has not lived up to this dream. A seat at the table all too often means tokenism, not inclusion. A seat at the table has meant committees which have five clinicians, five policy makers and a single consumer. Or it has meant that only âagreeableâ consumer views are invited.
In this instance, where the authors sought to publish a reasonable and balancing criticism of a heavily biased psychiatric paper, there was no seat at the table for us at all.
Perhaps, at least in part of our work, it is time to move beyond seeking consumer ârepresentationâ in the powerful places in mental health academia. Perhaps it is time to build more of our own tables: forums where people with lived experience set the agenda, and we invite others to join the agendas that we set. Mad Studies is one avenue that offers real potential for setting new and different agendas for change, with a very different balance of power.
Practical Changes
We issue a challenge to the editors of academic journals in mental health and related fields to not just welcome the voices of consumers, but to actively seek to change the power balance.
There are many ways to make this happen, such as naming consumers in calls for submissions and considering consumer authors in your author guidelines. The author guidelines for the Journal of Psychiatric and Mental Health Nursing provide a good example of this.
Other strategies are including consumer academics as peer reviewers and ensuring that your policies and practices are inclusive and welcoming of consumer voices, including the challenging ones. A simple approach would be to take this opinion paper about âmanelsâ from the British Medical Journal (Black, 20187)Â and simply replace âwomenâ with âconsumers,â and âmenâ with ânon-consumers.â
Examining our own experience with the journal Australian Psychiatry, we can also see the need for training and development for existing editors and peer reviewers to understand the validity and different epistemological bases for first-person narratives and lived experience perspectives, including critical views. Further, we can see an urgent need for journals to tackle structural barriers and unconscious bias. Our experience with Australian Psychiatry can easily be viewed as discriminatory: while it was acceptable for a psychiatrist to publish a subjective opinion, it was seen as unprofessional for consumers to do so. This is a clear double standard which functions only to exclude.
Closing Reflections
It was not a surprise to us that the paper âHip, Hip Hooray, ECT Turns 80!â was published. It is self-evident that psychiatry has been unwilling or unable to engage in critical debate about the disparity between systemic claims (âECT is safe and effectiveâ) and lived experience critiques (âECT can be devastatingly injuriousâ) such as those proposed in the lived experience account in our letter, and by many others (Maddock, 2014;8 Burstow, 20069). However, this was a particularly glaring example of medical bias that seemed to care more about a treatment itself than the people that treatment is supposed to serve.
We are not concerned if âa treatmentâ feels stigmatized. We are concerned about the 47.1% of people, according to Clarke, who donât experience âremissionâ (although we note that the concept of remission itself is disputable). We are concerned about the unknown number of people who experience devastating adverse effects from ECT (Read & Bentall, 201010), those who are never fully informed about the risks of ECT, those who cannot access services to respond to continuing adverse effects, and those who have no say in whether or not they were exposed to ECT, and live with the traumatic impacts of coercion.
It was a disappointment, but not a surprise to us that our letter was rejected by the journal Australian Psychiatry. Each of us authors have experienced many examples of psychiatric health systems being unwilling to hear critical views from lived experience. But this does not make it OK. It is of particular concern for an academic journal to be unwilling to welcome debate from the very people who are served by the practitioners who make up its readership.
It was, however, surprising to us that the journal responded in such a clearly offensive and unprofessional manner, and that they are wholly unwilling to consider first-person narratives. It was even more concerning to us that the journalâs editor could not appreciate the issues we raised.
We can see little reason for saying âHip Hip Hooray.â Instead we draw attention to a paper published in that same journal, five years previously. Whereas Clarke reflects on the abuses and deaths at Chelmsford Private Hospital as a threat to ECT, Walton (2013) reminds us that the lessons of Chelmsford have not yet been learned. We are inclined to agree:
Patients generally and particularly those with mental illness are still not provided with complete information about the benefits and risks of drugs and treatments. Some still have the wrong treatment. Many therapies and treatments lack evidence of effectiveness. Many doctors are still reluctant to report colleagues who are unethical or unsafe. . . . Most of us associate systematic harm to patients as a thing of the past. Clearly, we are still learning the lessons from Chelmsford.
