The commitment: how our mental health system still violates the rights of people with mental health issues
Content note: suicide and human rights breaches
Image of a group of figurines, with one excluded.
In 2013, I couldn’t leave the house and I wanted to kill myself. I had just returned as a 23-year-old working in East Timor, and was having, what I feel was a ‘mental breakdown’. With the help of family, friends and professionals, I resisted the urge to end the psychological pain and my life.
Later, these feelings would return. It was again friends and an excellent therapeutic relationship that kept me alive. Today, I can manage my mental health, with periods on and off medication, and with the use of mental health professionals. What has underpinned much of my stability today is built on my trusting relationships and peers who also have lived a similar experience.
I’m one of the lucky ones. As a white male with a family who could support during those crises, I fared better than others. To be sure, I had my difficulties with family violence and a family system that hummed along on trauma. But in my twenties, I didn’t face the barriers many do to good mental health care that many do. Importantly, my mental health journey was my choice. I wasn’t, like many others in Australia, denied my human rights through forced commitment to the mental health system.
Australia’s mental health system has a dark history that is often forgotten. Psychiatric care, like in many other in the Western nations, rests on imperfect foundations, with a history of eugenics, 20th century leucotomies (detaching parts of the prefrontal cortex from other parts of the brain) and other involuntary psychosurgeries for those deemed in need of pacification. Practices like ‘deep sleep therapies’ continued late into the 20th century. These were, by any measure, gross human rights violations.
Deinstitutionalisation in the 1970s and 1980s brought promises of change. Community-based care and human rights were among those promises. Sadly, that story was only half-told, with community care increasing. However, it was increasingly delivered by force through the use of community treatment orders that compelled attendance to clinics for medication and ‘case management’. There was greater community ‘care’, but no letup in the experiences of control.
Talking about this history of Australian reform, Dr Piers Gooding reflects:
The shadow of institutions looms large over mental health law and policy in recent decades. The last major mental health law reforms in the mid-80s happened at a time when not a single major psychiatric institution had closed.
There were good intentions behind the reforms, but critical ingredients were missing. Dr Gooding points out that while new policies of ‘community care’ had an ‘emancipatory spirit’, they were ‘still largely practices done to and not with people in mental health crises.’
Today, force remains the glue that holds together our clinical mental health systems. Thousands of Australians experience forced electroconvulsive treatment every year. Those numbers are dwarfed by the much larger group of people who experience forced medication, or the use of restrictive practices like seclusion and restraint. Despite being inconsistent with our international human rights obligations, every state and territory permits these practices.
Often calls for force stem from the belief that force is necessary to maintain the safety of the community or the safety of other people on mental health wards. These calls are understandable in two respects. First, the community have a right to expect that their governments keep them safe. Second, that staff working within clinical mental health services have the right to expect a safe working environment free of violence.
While these concerns may be understandable, they can be based on the wrong information. Evidence consistently indicates that the public overestimates any potential link between mental health and violence. But more to the point, the evidence suggests that violence – that is, the use of forced mental health care – isn’t necessary to keep all people safe.
Some services have virtually eliminated the use of restrictive practices. Others have implemented internationally developed programs to create safety for all. Core to these programs is the knowledge that reducing ‘containment’ (human rights limitations) of people with lived experience on wards leads to fewer conflict events, which then leads to fewer efforts to contain individuals. It’s a virtuous cycle.
The opposite is true of many other mental health services. Violence begets violence. That is, a culture of paternalism and human rights breaches leads to a greater chance of conflict within wards. When individuals are unable to have their rights protected in an environment experienced as transactional, they are more likely to use violence. That violence then precipitates the use of restrictive practices on people in distress. It is state sanctioned violence. It becomes a vicious cycle of violence.
These practices are also permitted despite the knowledge that they cause life-long trauma and other long-term impacts. The use of the medications – often involuntarily – is part of the reason that life expectancies of people using clinical mental health services is up to 30 years lower than the national average.
Can you imagine being told by your doctor, that you must take medications that might shave decades off your life, and that this is in your ‘best interests’?
Another part of why the community permits the use of force is based on the belief that it is only done as a last resort, and that it is performed within the strict legally defined parameters. Unfortunately, lawful and last-resort use of force is the exception, not the rule. The system has habituated a reliance on paternalism, coercion and force, very regularly outside the parameters of the law.
I saw it with my own eyes as an formal advocate for people when placed under mental health laws. It was also borne out in evidence that myself and others reported, where rights breaches were so common as to render existing legal rights ‘illusory’. Evidence also suggests that mental health review boards – bodies tasked with authorising compulsory treatment – may lack basic principles of fairness. Other regulators, with profound powers to protect human rights, have been asleep at the wheel.
I raise these examples not to demonise the workforce, but to shift the narrative. Mental health policy issues are not just fiscal in nature, they are around foundational. This is not just a system stressed and underfunded, it is a system that has never been built on a commitment to human rights.
The reason human rights were never built into the system is because the system was never designed with the people who used it.
The ‘nothing about us, without us’ mantra from the disability movement remains anathema to many parts of mental health policy and practice. An obvious gap is the lack of formal leadership structures. Despite calls for decades, the Commonwealth is still yet to create separate consumer (aka people with lived experience) and carer peaks. These are essential to inform policy design and development.
The about us, without us unofficial policy continues on the boards of many mental health services. While organisations such as Orygen Specialist Program (formerly Orygen Youth Health) or Headspace have managed to influence public policy debates, neither organisation appear to have designated positions on their board from people with lived experience, or young people (though Headspace has non-voting positions for young people on their board).
Excluding too are the political processes that construct ‘expertise’, or as author Bri Lee puts it, echoing Foucault, ‘who gets to be smart’. Recent mental health inquiries, such as the Royal Commission in Victoria, are celebrated as being led by the ‘experts’. In the Victorian case, experts included psychiatrists, lawyers, public administration officials and carers. Somehow, however, experts excluded the people who directly use the system, and who directly experience human rights breaches.
Recent discussions about the Better Access Scheme provides illustration of sidelined lived experience voices. The conversation has been largely governed by the two professions with the most financial interest in the allocation of government funds: psychologists, who tend to provide ‘lower intensity’ mental health services to people, or psychiatrists, who tend to lead the teams that provide multi-disciplinary care for people with more ‘complex’ mental health issues.
Nowhere in the Minister’s announcement to discontinue the extension of the Better Access Scheme, was evidence of formal consultation of people with lived experience. About us, without us.
This exclusionary policy approach occurs despite a wealth of lived experience that speaks, but is rarely heard. Much of this comes from the ‘consumer movement’. Consumers – an imperfect policy term used to describe people who use services – actually have a rich history of self-help, self-organisation, and activism. But few Australians, including those who support progressive policies, would know of it.
Speaking to Deputy Commissioner for the New South Wales Mental Health Commission, Tim Heffernan, he describes the consumer movement as having ‘began in the 1960s as people moved out of institutions into a coercive world of stigma, discrimination and desperation’ – the kinds of practices noted above. Reflecting on the consumer movement’s role today, he says that consumers are:
claiming our place as experts by experience, we fight every day to reform and replace mental health services that have been created to keep us marginalised and compliant.
People with lived experience (aka consumers) shift policy and mental health debates. They reframe policy questions away from how to cure people of mental illness, to how we can provide mental health care so that people live the lives they want. Those different frames change the underlying purpose of services to work that works with, not works on, individuals experiencing distress, trauma, voices (often called hallucinations) or unusual beliefs (often called delusions).
To some clinicians, these two frames are the same thing. But to many of us with lived experience, better mental health services are those that spend less time labelling and medicating, and more time listening and engaging in mutual learning. Some individuals may seek diagnoses and medication, but it is done in service of their life goals and dreams, rather than often narrow clinical goals of mental health services.
People with lived experience also animate discussions about human rights. We are often the sole voice speaking up about a service’s compliance with their legal obligations, often to their personal and professional detriment. We often step back to shift the focus from providing services to addressing the social determinants, such as trauma, housing and inequality – that give rise to to mental health issues and distress. These vantage points and experiences are assets that an open and adaptive mental health system should welcome.
Unfortunately, instead of meaningful engagement and support on their own terms, people with lived experience continue to experience human rights abuses and discrimination across Australia. This is made largely invisible by our mental health conversations which typically focus on expanding access to the mental health system. But if the clinical mental health system continues to be the site of mass human rights breaches, have we thought deeply about the implications of this?
Underlying these tensions is a question of who whose mental health system is it. To my mind, the answer to that should be the people who use it. And yet that is not what you see on the boards of service providers and the budget sheets from Commonwealth and State budgets. Money goes to systems, services and institutions whose incumbency outweighs their questionable track record.
This tension over who lays claim to the mental health system won’t disappear. It will continue to re-emerge in evolved forms. Digital mental health services are a new frontier, but research from Dr Gooding, myself and others reveals an uncertain future. Handled well, digital mental health technologies could build on the best parts our care systems. However, handled badly, it could emulate the worst parts of our carceral systems. To ensure the former and avoid the latter, lived experience must be front and centre in the governance of this sector.
As we begin 2023, projecting a personal wish-list for mental health care would be wrong. My experiences reflect a narrow slither of our broad, beautiful and diverse lived experience community.
Instead, I ask that we reconsider foundations. The only justifiable wish, therefore, should be the inclusion and leadership of people with lived experience. To keep us alive and thriving, we need a different approach from governments and the system. We need a different kind of commitment.
