Psychosocial Disability Rights and Digital Mental Health: An Interview with Piers Gooding

Piers Gooding is a Mozilla Foundation fellow (2020) and researcher at the Melbourne Social Equity Institute at the University of Melbourne Law School. His main interests are disability law and policy, international human rights law, the law and politics of mental health, and empirical legal research.

Gooding describes his scholarship as an interdisciplinary undertaking that blends theoretical inquiry with applied qualitative research at the local, national, and international levels. He has worked with the UN Special Rapporteur for the Rights of Persons with Disabilities and advised the World Psychiatric Association on recommendations for alternatives to coercion in mental health. He blogs at https://pgooding.substack.com/ and tweets at @p_gooding.

In this interview, he discusses his journey to engaging with human rights as a way to rethink mental health. We focus on his efforts to marry international human rights law and the work of disability rights committees to ensure that people with psychosocial disabilities are not left out. He then talks about his longstanding work to prevent coercion in mental health and its connection to the digital, data-driven direction taken by the field as a whole. He elaborates the regulatory and ethical issues he has uncovered in his research at the intersection of mental health services and data-driven technologies and gestures at emerging methods of “algorithmic accountability” for addressing some of these issues.

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

Emaline Friedman: You have broad theoretical and interdisciplinary interests. Why don’t you tell us a little bit about your background and how you got started?

Piers Gooding: Sure. I grew up in Melbourne, Australia, and through a formative experience with a family member experiencing pretty serious crises and entering mental health services, I gained an interest in the politics of mental health.

My first degree is actually in history and cultural studies. That enabled me to investigate some elements of the mental health services that I was encountering at the time through a historical lens, looking at the social and political conditions that gave rise to mental health services as they are.

When I was a kid, I grew up not far down the road from a large scale, Victorian-era mental asylum, and I was fascinated by the role that institution had in the city. I investigated its origins and its changing relationship to the city, the very utopian ideals of reflecting civilized society, and its degradation into a place of exclusion, segregation, and violence against people with disabilities. When I was twelve years old, the last remaining residences in that institution burnt down, and six men with intellectual disabilities in a locked ward were killed.

I remember as a kid learning about one of the men who had not received a single visitor in his 30 years of life after being deposited in the institution as a baby. I think that really grim history sparked my interest in the broader cultural, social, and political place that psychiatric institutions, psychiatry, and psychology have in Western history.

Through my degree, I was able to gain a role as a research officer at an advocacy organization for family members of people in the mental health services. I was undertaking policy-based research, and law reform focused work. I was invited to do a Ph.D. in a law faculty at Monash University through that work.

I focused on a major development at the time in the mental health world—the UN Convention on the Rights of Persons with Disabilities (CRPD). At one point, I took a break from work and traveled all around the US, meeting as many activists and advocates and interesting thinkers in the mental health space as I could. I was able to engage with some really tremendous activists and thinkers, like Leah Harris and Judy Chamberlain.

That really gave me a sense of the global political struggles, goals, and work that was going on to address some of the harms that have occurred in mental health systems. From the presentation of Tina Minkowitz, Esq. at the CRPD, I was introduced to this idea of supported decision-making. Supported decision-making really spoke to me as an idea that would challenge some of the broad assumptions that seem to pervade our social and cultural responses to mental health crises.

It reframes the issue as one of looking at the conditions in which a person lives and how they can be assisted to realize their will, their preferences, and their broader rights related to housing and all kinds of social and economic things that make up a good life without diminishing or overpowering that person in the process.

I set to focus my Ph.D. on this idea of supported decision-making and this question of what the CRPD meant for mental health legislation. You know, the same legislation that was in operation when that asylum on the hill by my childhood home was in its final stages.

I was very interested in the history of policy and law leading up to that moment, and new forms of law and policy that appeared to center on people’s rights in crisis, but which in practice appeared to establish different standards and different rights for those individuals. In my view, these were discriminatory exceptions for someone by virtue of being diagnosed with a mental illness.

At one point, I was concerned that I would not be able to conduct a Ph.D. in a law faculty because I didn’t have a law degree. I was at a disability rights conference here in Melbourne. One of the speakers was a fellow named Professor Ron McCallum, who ended up being the first chair for the UN advisory body that essentially provides interpretive guidance about how to apply the CRPD. Ron is a sort of famed lawyer here in Australia.

I managed to find him in a quiet moment in the conference and asked his guidance, and interestingly, he said, historians make the best lawyers because they understand the context in which a law was written. And that has always really stuck with me. I am interested in the social and political context in which laws are applied, so I now consider myself a socio-legal scholar.

 

Friedman: Given that your background has led you to uncover many deep inequities, would you say that you have reformative aims for psychiatry?

Gooding: I do not think my strategy or aim has ever been to reform psychiatry. I have come to see that psychiatry reflects a lot of societal views on distress and madness. So I’m more interested in social, cultural, and political conditions that inform the ideas behind professions like psychiatry.

I have tended towards the human rights agenda in mental health, but not because I think that human rights are necessarily an ideal organizing principle for all social justice claims. In fact, I have reservations about “human rights” because it tends to individualize issues by focusing very much on the individual and their rights. These rights are bound up in questionable political agendas over the 20th century, particularly the driving force of neoclassical liberalism or neo-liberalism.

There are things we lose by pursuing sociopolitical objectives in legal terms. I think that puts a lot of the work on the law and in courts and lawyers. That said, I do think that the CRPD is an extremely powerful resource for achieving justice in the mental health context. It does something transformative by drawing what had previously been a narrative couched in terms of health, illness, and pathology into space where the social model of disability operates. This model, very simply, refers to viewing the social, environmental, and physical conditions as the disabling influence on a person.

People have various impairments, and that’s just part of human diversity. The disabling force can then be seen as the interaction between that impairment and the environmental and social barriers to that person participating and flourishing on an equal basis with others. This draws attention immediately to those conditions.

To answer your question, I think rather than trying to reform psychiatry, I am very interested in drawing attention to those social and environmental conditions in which harm is done and trying to remedy it at that level. I think the convention provides a really strong frame to address various aspects of that injustice.

 

Friedman: I am hearing that a human rights framework can sometimes mean passing the buck of responsibility to, say, legislators and courts, but at the same time, a lot of the work that you’ve done highlights the areas in which that framework may be the most potent. I am thinking about the work on alternatives to coercion. How have you defined coercion for the purpose of that work, and what are some of the arguments made against coercion at the international level?

Gooding: Sure. I will even go back a step and address the first point about human rights being a powerful advocacy tool. It really carries a strong moral and political weight around the world (in some countries more than others, and some circles more than others). I think what makes the CRPD unique compared to other areas of international human rights law is that people with disabilities were deeply involved in its negotiation right from the beginning.

You had over 120 different disabled people’s organizations and umbrella organizations that represented thousands around the world. People with experience in the user-survivor movement, or the movement of people with psychosocial disabilities, as the terminology goes, were absolutely strategic in those negotiations.

What you get is a piece of international human rights law that, though described by some as soft law in places like Australia and the US (where there aren’t strong regional human rights courts), still has a strong, normative power in setting agendas and providing a central focus point for broadly agreed-upon norms.

In relation to the second part of your question, the definition of coercion used in our work on alternatives to coercion is a very broad one that referred to both threats and compulsion that involves physical force. In other words, the action or practice of persuading in a way that’s characterized by the use of force and the threat of forcing someone to do something in the context of mental health care provision.

This could occur in a nominally voluntary service provision, where someone says, well, “if you don’t receive this service or take this intervention, we will force you to do so.” But it obviously also occurs in the context of people placed under an involuntary commitment or being subject to forced interventions under mental health legislation.

The CRPD poses a fundamental challenge to that kind of intervention and demands a response that prioritizes supported decision-making and broader support to exercise one’s legal agency. Basically, it’s to say that these interventions can no longer happen to people simply on the basis of them having a disability and that any interventions must respect people’s human rights.

That is a break from centuries of intellectual traditions suggesting that personhood was dependent on someone having some essential human characteristic, particularly a certain cognitive ability and a certain capacity to reason. I think that starts to explain some of the horrors that you see through the 20th century where things like the Nuremberg Code, which requires informed consent for any medical experimentation, were just presumed not to apply to people who were diagnosed with a psychiatric condition or mental illness.

There were around 24 international human rights law instruments developed through the 20th century, yet it was just presumed that exceptions could be applied to people with particular diagnoses.

I think the CRPD fundamentally challenges that intellectual tradition. But, of course, it is sitting there at the high heights of international human rights law. Translating that into practical political change that corrects how mental health services are provided is very much a work in progress. I see my work as part of that work in progress.

I think that foundational involvement of persons with disabilities, particularly people with experience in mental health services or people who have experienced and feel they have survived abuses. Those interventions are absolutely critical at as many different stages of the research as possible, from research design right through to how research is conducted and communicated. That is what has guided me.

 

Friedman: I’m curious, given the contested terrain of personhood, from an intellectual perspective, were there any major disagreements or notable debates in the generation of those recommendations for alternatives to coercion?

Gooding: Certainly. The whole terrain has been characterized by debate and intense disagreement. Some of the key provisions on issues related to coercion in mental health were the subject of vigorous debate during the negotiations.

The negotiators came to something of a negotiated silence, as one of my colleagues puts it. Everyone was able to agree to the terms, but it was not clear whether all kinds of forced intervention in the mental health context were to be abolished. Looking at the text, it is not clear. And that interpretive silence has caused enormous disagreement about what the convention means in relation to involuntary mental health treatment and interventions. That has been evident in debates between major human rights committees within the UN.

Even within the UN apparatus, there is a major disagreement between human rights treaty bodies—in particular, the committee on the rights of persons with disabilities, and, on the other side, the broader human rights committee. The human rights committee has said that involuntary treatment is okay, subject to the rule of law, opportunities to appeal, and if it is the least restrictive alternative.

This is more or less what the current arrangement is in most countries that have mental health legislation. The committee on the rights of persons with disabilities, on the other hand, has unambiguously said that all forms of coercive intervention in the mental health context must be abolished. You see that kind of disagreement travel down to the regional level, to the individual country level, right down to conference panels in public forums and probably the organizing rooms of mental health service organizations.

I suppose that disagreement ended up in something of a deadlock, which is why the work on alternatives to coercion is so important. There is broad agreement that coercion is used too much on both sides of the debate, that it is unnecessary in almost all situations, and that more work needs to be done to find ways to avoid it. That is simplifying it a lot, but that is the crux of it.

Everyone agrees that there is a need to pursue law and policy reform to reduce and prevent coercion. Pointing to that body of research can be a useful political strategy to get everyone moving beyond incessant disagreement.

 

Friedman: So there is broad consensus that psychiatry and mental health settings are pretty reliant on coercion?

Gooding: I mean, it is just manifestly the case. If you look at public health services in the kind of high-income countries that I have looked at, between 30 and 50% of people in public mental health services, particularly in hospital wards, are under some kind of involuntary status, according to mental health legislation.

There’s considerable use of forced treatment through mechanisms like community treatment orders or assertive outpatient treatment in community services. In countries like Australia, the UK, Canada, and the US, these account for 13% or more of community mental health encounters. I think that is going to vary around the world. My stats are from Australia, but you will find similar rates around the world.

 

Friedman: I found myself struggling to understand how the notion of degrading treatment, specifically, could be operationalized.

Gooding: That relates to part of the convention on the rights of persons with disabilities in the part of international human rights law related to the convention against torture, which in its full title includes the convention against torture and cruel inhuman, and degrading treatment. That part of the convention against torture is often missed. It’s a provision bound up in this very heavy notion of torture, which is crucial to some people’s framing of these issues.

For example, Tina Minkowitz uses that provision as a central part of her understanding of forced treatment in the relevant issues. It is crucial, and the committee on the rights of persons with disabilities is very much activating provisions in international human rights law regarding cruel, inhuman, and degrading treatment. I think that is just a useful way to think about some of these issues. I do not know how useful it is to distinguish those particular elements or what’s inhuman compared to what’s degrading.

 

Friedman: Your reviews have found that explicit efforts to prevent or reduce coercion nearly always provide positive results. With research and guidance becoming available to service managers and clinicians, what would you say are the notable blocks to adoption?

Gooding: I think culture is a major block where it would be challenging for many service providers to shift perspectives. I think that is informed by legislation that may require interventions interpreted to require coercion. Then, I suppose, the political pressure comes from governments who are playing the risk card and really amplifying risk-based concerns.

There are also barriers to research agendas and the intellectual work that needs to be done to prioritize the reduction of coercion. Although we found a great deal of research that supported the effectiveness of interventions reducing, preventing and even eliminating coercion, we were surprised by the sheer lack of research.

The important move is to draw people’s attention to this and then start to demand research agendas be shaped around the question of what comes next if we are going to take the convention seriously. We need a transitional period in which the movement takes place.

For example, there was another survey of alternatives to coercion that was done quite recently. It found that there was not a single randomized trial with the aim of reducing coercion in the US since 1999. I think that is astonishing.

I read some of the quotes from the former director of the NIMH, arguably the largest mental health research institute in the world, who describes the many billions of dollars that went into neuroscience and genetic research obsessed with the pathophysiological, biological basis for mental health diagnoses. That same person openly describes how that research investment didn’t result in the needle being shifted in terms of real-life change for people who are using services. That is a major blockage when it is not even seen as a priority in the distribution of resources for mental health-related research.

 

Friedman: I wonder if there are any practices that you have written about in recommendations that you’re aware might be seen as radical to service providers? Any intuitions on what kind of a leap it might be for service providers to influence some of these in practice?

Gooding: Well, in our report, we tried to provide options because none of us assumed that there would be any single intervention or program or practice that would magically transition responses to stress and crises overnight into a human rights compliant, wonderful response. That would be perverse because it would presume some universal solution to the extremely varied political, social, and economic conditions in which these issues play out around the world.

We tried to provide a spectrum of programs and practices and initiatives, some that were in the mental health services, and some that were explicitly based outside of mental health services that were peer-run, informal community-driven processes.

We also looked at those formal policy changes, like the safe-word strategy and other kinds of interventions. In terms of the practices that might be alarming or seen as a radical change for mental health service providers, maybe the open doors policy. There has been some research in Germany that indicates that wards that had open doors tended to have lower rates of conflict between patients and staff and had better outcomes on several indicators.

If you propose that or audit it of hospitals, it will cause a great alarm for those reasons that I described earlier. There is a cultural blockage to thinking that anything except some element of coercion is required when it comes to a mental health crisis.

Then there are the legal problems that arise when clinicians and hospital administrators are fearful of liability. This comes in part from broader cultural and political pressures that will demand someone take responsibility if something goes wrong. That usually lies with the service providers.

 

Friedman: Let us switch gears to the connection between coercion in psychiatry and the ramp-up of algorithmic and data-driven technology in mental health care. I am curious, how do you understand this connection?

Gooding: I am a relative newcomer to issues concerning algorithmic and data-driven technologies, things like artificial intelligence, machine learning, and robotics, or other technologies of automation. One of the areas I am interested in is the connection between coercion and some of the algorithmic technologies that are arising. Your point about risk is important because many algorithmic and data-driven technologies are driven by the desire to predict outcomes based on mass amounts of data.

It might be predicting the likelihood that a person is experiencing altered states of consciousness or psychosis or the likelihood that someone may be harming themselves or intending to commit suicide, or it might be about predicting the likelihood that a person will experience a diagnosis of depression.

You know, I think predictive power is what people see in algorithmic technology as being so useful. But it’s interesting with predictive power because you can predict something, but if the typical responses are there, then what’s the value of predicting it? That is one of the questions that I’m quite interested in.

To draw it back to coercion and risk, I suppose there’s the grave potential for algorithmic and data-driven technology to amplify that tendency in our societies—obsessing over risk and have it lead to legal and policy responses to distress and emotional crises that further monitor and observe people to prevent these things. People already make claims about the predictive power of technologies in relation to gun violence.

Stories from Florida describe state powers that collate information about students’ mental health service use and then compare that with social media posts. This information is then provided to the police, ostensibly to prevent gun violence. That is a good example of how these technologies can be drawn into coercive impulses within various state agencies.

I have also seen studies into the use of GPS monitoring devices in closed wards and forensic psychiatric facilities. Very few of those studies have considered the human rights implications and other ethical concerns related to the experience of the person and broader societal impact.

I just finished a broad survey of studies into algorithmic technology in online mental health initiatives. We came up with a list of about 128, and only 19 of these studies even considered ethics. When I say considered, that only means, in some cases, just having a one-sentence reference to broad ethical issues. In others, there were maybe two paragraphs given to ethical considerations, but that is a serious oversight in the research. In not a single one of the 128 studies was a person with lived experience of services or an advocacy group involved in the research.

  

Friedman: I am dismayed to hear that there were so few studies that mention ethics. What do you think gets in the way of putting ethics on the agenda in mental health contexts where one would think the sensitivity of information would be more obvious?

Gooding: Well, there are exceptions to the kind of trend that I pointed to. Examples from the UK and US where clinicians have really engaged critically with some of these questions have engaged people with lived experience.

But I see this as a trend, and I suppose it is part of a problematic techno-solutionism. People view technology as swooping in and solving all of these complex social and political issues. Some of the more severe bio-focused traditions in psychiatry could be accused of a similar kind of techno-solutionism, presuming that pathophysiology merely needs to be addressed via medication in order to resolve what are actually complex social, political, and personal problems.

I think the way to address some of the gaps in thinking about the ethics, law, and politics of digital technology in mental health is to bring in those with a lived experience right from the foundational discussions about research agendas through to the conducting of that research.

Work needs to be done to improve the digital literacy of advocates in the mental health space. Equally, big tech companies and other stakeholders who are new to the mental health space (computer scientists in particular) need to become literate in the politics of mental health.

Trying to promote debate at the moment and draw these issues out of the shadows is also crucial because the technology is at an early stage. Once ethical, social, and political issues have been worked out, and once the potential harms are very clear, then the law can come in. Only at that point can one start talking more fruitfully about regulatory and legal impacts. I think that is a crucial step to addressing the issue you describe—ethics being easy to sign up to but not really binding in the way regulations and laws are.

 

Friedman: I really appreciate your pointing to the “solutionism” common to overuse of medication in psychiatry and products in the tech industry. It is concerning that the “move fast and break things” ethos of Silicon Valley would invade the rendering of mental health services online. A lot of the anti-coercion work that you do would need to expand to include the provision of these technologies.

Gooding: I think that is a really important point. It is something that those who are more grounded in the politics of mental health are going to have to grapple with. There are new forces at play: computer and data scientists and big tech players.

One useful path will be connecting service users and researchers alike with the broader movement for algorithmic accountability. The tradition of work concerning internet politics, digital rights, and the kind of force that algorithms and data-driven technology have on our lives and efforts to ensure that those technologies are subject to good and robust governance.

Algorithmic accountability concerns are not just that algorithms are explainable, that decisions can be challenged, and so on, but also asks foundational questions about whether particular technologies ought to be developed for particular purposes at all. And if so, who governs them?

 

Friedman: I think it is difficult for people to grasp. Maybe it has to do with the sort of false binary of science and humanities—I may be reaching here, but the governance of algorithms really determines who gets to decide how to make meaning of the massive amounts of data that we’re now able to collect.

Gooding: Well, that is absolutely right. That’s a really interesting way of framing it.  I had not really thought about governance as meaning-making, but it is certainly the case.

Given that knowledge is currently being produced at a relatively early stage, now is the time to intervene in shaping that knowledge. And who better to inform the meaning given to these various initiatives than those with the experience of using services and those who have lived experience of distress outside of the use of service?

There are really promising technologies being developed that draw from people’s direct lived experience. I think there’s potential for creative and productive collaborations to make the most of these different technologies.

 

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MIA Reports are supported, in part, by a grant from the Open Society Foundations