Can Psychosocial Disability Transform Mental Health? A Conversation with Luis Arroyo and Justin Karter

This interview is a conversation between Luis Gerardo Arroyo Lynn and Justin Karter.

Luis conducted this conversation in his role as an editor of Mad in Mexico. Established in September 2021, Mad in Mexico is not just an extension but an essential limb of the international initiative of Mad In America. Its mission resonates with the core values of challenging conventional thinking around mental health, focusing on the Spanish-speaking communities of South and Central America as well as the United States.

Luis graduated from Universidad La Salle and is now pursuing a master’s degree in Social Psychology of Groups and Institutions at UAM Xochimilco. He is currently conducting research on “Depsychiatrization of Mental Health,” with an interest in the fields of critical psychology, anti-psychiatry, and anti-speciesism.

Luis is in conversation today with Mad in America’s own Justin M. Karter, whose multidisciplinary work stands at the intersection of psychology, philosophy, mad studies, and global mental health. As a counseling psychologist, an Instructor for the Center for Psychological Humanities & Ethics at Boston College, and the lead research news editor at Mad in America since 2015, Justin’s approach to mental health goes beyond clinical practice.

In the spotlight is Justin’s research titled “Inclusion Toward Transformation: Psychosocial Disability Advocacy and Global Mental Health.” This study, completed in August 2021, addresses pressing concerns in modern mental health discourse. It critiques the prevailing Western notions that shape the Movement for Global Mental Health (MGMH) and champions a rights-based perspective, considering cultural, political, and economic conditions.

This interview explores the crux of Justin’s research, examining the transformative potential of an integrated psychosocial disability framework. By interrogating and deconstructing mainstream discourses, this conversation promises to shed light on how we can better serve those with lived experiences of mental distress, transcending traditional boundaries and embracing a more rights-based, inclusive approach. This conversation aims to redefine the way we approach mental health, madness, psychiatry, and psychological suffering, in a world that desperately needs a compassionate, critical perspective.

 

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

 

Luis Arroyo: So, the idea of this interview or conversation is to discuss your dissertation and other articles you’ve written about Global Mental Health, particularly focusing on the relationship established with the psychosocial disabilities movement and activism. Right now, I’m working on a project exploring how activism is driving significant changes in the way we think about mental health. During my research, however, I find myself getting stuck in situations where mental health and psychiatry discourses seem to exploit these circumstances. They base their own narratives on activism, making them appear progressive but in an almost extractivist way.

 When I began reading your articles and thesis, I was inspired. It’s remarkable work, and I thought to myself, “More people need to know about this, read about it, and be aware of these situations.” So I sent you some topics to discuss, along with specific questions. The idea is to see where the conversation takes us, aiming for something more flexible. But the first topic, the one with which I want to start, is “What is Global Mental Health?” Initially, I thought of it as a discourse established by the WHO, a psychiatric discourse. But in the article “The Poison in the Cure,” you made a distinction between Global Mental Health and the WHO.

Justin Karter: Yeah, first, thanks for your interest in this work. I think it’s an important topic that hasn’t received much attention within the psychological and psychiatric disciplines, particularly in the Global North. I mean, the movements of consumers, survivors, ex-patients, scholarship, and activism have been largely marginalized in our professional disciplines. Now, paying attention to the way psychosocial disability, both as an identity and an advocacy framework, has challenged our fields and hasn’t really been acknowledged or talked about as a transformative discourse. So yeah, I welcome more attention to it.

Also, I’m not a person with a psychosocial disability, and I’m a researcher in the Global North. So there are all these limitations to my own understanding that I want to acknowledge. I hope that it can serve as a bridge to some extent, inviting other professionals to make the effort to start to listen to these voices and engage with the scholarship in a way that I think could be transformational for our discipline. It could also improve conditions of treatment for people worldwide.

Starting with that, what is the Global Mental Health Movement? Well, it’s tough to define, right? Because it’s amorphous, and there are lots of institutions involved. There are lots of different conceptualizations and treatment approaches captured within this larger framework of Global Mental Health. But for most, the movement of Global Mental Health is connected to the Lancet Commission. The Lancet is a leading medical journal, and the Lancet Psychiatry Commission report on Global Mental Health has been led by Vikram Patel and many other well-known psychiatric scholars. From the outset, it was also connected to institutional players like the World Health Organization, the World Bank, and even the United Nations Sustainable Development Goals.

The idea, as you mention in the article with Dr. Cosgrove, “The Poison in the Cure,” was that there’s an economic and political incentive globally for improving mental health treatment. The idea was that the Global South has a large number of people that might be suffering from mental health conditions, and these conditions were preventing people from being productive laborers or citizens. This was hampering the Global South’s attempts to increase GDP and reach the economic productivity of the Global North. There’s a lot that’s problematic about this narrative, and we can pick it apart a bit, but that was the economic framing initially. The global community helped to shape mental health treatments in the Global South that would have helped these countries achieve such an economic standard that could improve their conditions.

 

Arroyo: I was thinking about a situation that you mentioned regarding your own perspective on the field. Since you’re not a person with a psychosocial disability and you’re also a researcher from the Global North, you identified this as a kind of limitation in discussing counter-discourses and various perspectives. You made it clear that this existing condition might influence your viewpoint. Before we continue with the topics, I was wondering if this specific situation made your research more complicated or if it perhaps gave you some advantages. How do you deal with these kinds of situations when talking about psychosocial disabilities without being seen as part of an extractivist system?

Karter: It’s a complicated question, and I think it cuts both ways. As someone with the privilege of being in academic disciplines in the Global North and being a white researcher, society affords me certain privileges. These allow me to impact the discourse in specific ways. I’m taken seriously as a researcher and granted access to institutions that normally exclude people with psychosocial disabilities, such as psychiatric conferences and events from the American Psychological Association.

To the extent that I’m able to faithfully represent the interests of groups that I’m not a part of, I believe I can be influential. It’s important to have allies that help push the narrative forward. However, the risk lies in how my own interests, both consciously and unconsciously, influence how I represent the work. I also have to work within certain constraints in academia or as a graduate student, whether it’s the pressure to publish quickly or to translate the language of those with lived experience into recognizable academic jargon to be seen as a serious researcher.

All these pressures can distort the message in a way that may co-opt it and make it more digestible to the psychiatric or psychological establishment or may lead me to speak for people when they can speak for themselves. So I think it’s essential to be conscious of both sides of this – the ways I can be helpful and influential and how I can leverage my privilege to make space for this movement in areas where space is not being made. At the same time, I must recognize my limitations and the ways in which I might not always be a faithful ally and be open to feedback when that happens.

I don’t think there’s any clear answer except for acknowledging the tensions on either side and trying to take a stand on shaky ground. I had a professor in my master’s program, Bob McInerney, who gave a great lecture on how all our concepts are constructed on shaky ground, but we still have to decide what matters to us, what our values are, and what we’re willing to fight for. So I try to take a stand for what feels right at the moment, even when caught in the paralysis of questioning my role and influence and remain open to learning from my mistakes.

 

Arroyo: I was reflecting on the moment when I started to read your dissertation, “Inclusion Toward Transformation.” When you discuss psychosocial disability as a counter-discourse against the psy complex, specifically in the Global South, it made complete sense to me. But simultaneously, I was contemplating the particular difficulty you were navigating, being from the Global North and speaking about the Global South. At least from my perspective, when I read it, I felt that you were genuinely respectful of the discourses of people with lived experience.

 Returning to “Inclusion Toward Transformation,” you describe psychosocial disability as an umbrella term that covers psychiatric survivors, mad persons, and other identities. So, do you think there’s a difference in being referred to in one way or another? Does it imply something different, or is it all part of the same identity?

Karter: I think that there are really important differences, and the language we use to understand ourselves and our experiences is super important. The language itself opens up possibilities for understanding how to respond, and it can also obscure other ways of responding. In my research, I found that psychosocial disability, as a term coming from the Convention on the Rights of People with Disabilities in the UN, offers a new framework. It provides an umbrella term that many different people worldwide, with different advocacy experiences and narratives about their mental distress, have embraced. Many of these groups had previously interacted and debated, but some had not.

Not only does psychosocial disability offer a way for people to advocate against psychiatric discourse and act as a counter-discourse, but it also works to bring people with different counter-discourses together, creating productive friction. Often in political organizing, groups that are resisting may splinter and fight among themselves, preventing a unified front against the oppressor regime they’re fighting against. This could happen under the psychosocial disability framework, but it seems, at least from the participants I was able to work with, that there are core conditions they agree upon. They disagree on many things but agree on letting people come to their own narrative about their experiences. They acknowledge that people may have a strong connection to their own story and believe that people should be allowed to have that and revise it over time.

The reason why there’s such a strong belief in allowing people to come to their own understandings is that they didn’t want to replicate the power dynamics experienced in psychiatric settings, where somebody says, “This is what’s going on with you, this is the true story about your psychotic episode.” They don’t want to replicate that dynamic, so they allow room for disagreement and respect people’s process of doing so.

Specifically, you mentioned psychiatric survivors versus psychosocial disability. I see psychosocial disability as an umbrella term that serves a very pragmatic purpose. It’s an identity for some and a legal category tied to human rights discourse and a disability advocacy framework. It offers a way of speaking back to psychiatric practices worldwide that demands an answer, whereas previous discourses like psychiatric survivors, ex-patient, or mad studies could be ignored or marginalized. Psychosocial disability, with its legal significance and support from organizations like the UN, forces psychiatry to respond.

The term psychiatric survivor started in the United States, and one of my participants pointed out that it still centers on psychiatric discourse. If you come from a community that doesn’t have a strong psychiatric history, with no asylums, etc., there may not be something to be a survivor of. People are hesitant to define themselves in opposition to an institution they never really interacted with, and sometimes they wish for more access to treatment within a human rights framework, without imposition or involuntariness. They would like more access to medication, psychotherapy, and informed, culturally appropriate services.

There was some tension about the term psychiatric survivor in the Global South, as it doesn’t always make sense to people in communities without a long legacy of psychiatry, in the same way that it makes sense in the United States as it developed in the 1970s.

 

Arroyo: I was thinking that the term “psychiatric survivor” is hard to find, at least in Mexico City. I haven’t encountered it easily, and I think that’s because of what you mentioned: there’s not a background of psychiatric abuse in the same way as in the United States. By saying this, I don’t mean to imply that there’s no abuse by psychiatry in Mexico; of course, there is, but it occurs in a different context and situation than in the United States.

I’m recalling that in the United States, the police are more aligned with psychiatric institutions, allowing police to intervene in certain situations. This is something that doesn’t happen as often in Mexico, so I believe these are some of the distinctions explaining why the concept of “psychiatric survivor” is not as commonly used here in Mexico.

Additionally, with the idea of psychosocial disability serving as both a legal category and an identity and having the background of advocacy for human rights or alignment with the UN and the Convention, it is somewhat forcing psychiatry to acknowledge this concept and respond. I think that Psychiatry isn’t really answering to the people with lived experience but rather to other institutions and “authorities” in this sense. So, in that context, do you think it’s possible to discuss mental health outside of psychiatric discourse, or is psychiatric discourse always implicit when we talk about mental health? 

Karter: It’s a good question, and I wonder—and I’m not answering from a point of expertise but from a point of curiosity—whether, as things have become so globalized and the Global North has played such a role in colonizing not just the institutions of the Global South, but the language and concepts, it is becoming less and less possible to exist outside a baseline discourse that has been influenced by Western psychiatric history. There might still be places where that is more possible than others, but I think that at some level, it might be the case that alternatives are held as alternatives rather than primary treatments because the primary approach seems to be this sort of Western biomedical set of concepts or framework.

It’s sort of like asking, are there ways of experiencing sadness or feeling distraught without implicitly invoking the concept of depression, which is rooted in Western language and psychiatric practice? I think yes, but it’s increasingly more difficult not to have that as part of your implicit framework when you’re trying to understand what is going on with your mood.

 

Arroyo: With that, I just talked with Tina Minkowitz about a book she wrote, “Re-Imagining Crisis Support: Matrix, Roadmap, and Policy,” and in the conversation, she mentioned, “Well, maybe ‘crisis’ isn’t the best word, as it brings us back to psychiatry.” Distress, sadness, even feelings, affections, and perceptions always lead us back to the idea of “Is it normal or not normal?” and “Should we, or can we, medicate it?”

Karter: The notion of emotions being rooted in the individual is consistent with Western enlightenment philosophy. This view posits that feelings are contained within us and are personal possessions rather than manifestations of complex interactions involving our relationships, the world around us, and the material universe we engage with daily. This individualistic perspective can limit our language and understanding, making it challenging to explore more nuanced concepts. For example, how can we articulate what it means for an emotion to be interpersonal or relational, rather than solely an individual experience? This issue goes beyond mere semantics, touching on profound questions about the interconnectedness of our feelings with others as we speak, our shared history, our ancestry, and the various factors present in our interactions. Such a holistic perspective recognizes emotions as dynamic and emergent phenomena, shaped by complex interplay rather than isolated within individual minds.

 

Arroyo: With that, I’m going back to “Inclusion Toward Transformation” because I think I remember a part in which you mention that advocacy groups in the Global South are defying the idea of Global Mental Health. They argue that it doesn’t take into account the context and political aspects, seeming to focus only on particular situations, as you mentioned. With that in mind, how can we start to think about mental health outside the psychiatric discourse and approach it from a lived-experience perspective? How can we shift the scenario, and what role are advocacy groups playing in making that change possible?

Karter: It’s a great question, and I wish I had a clear answer. I think I have two different lines of thought. One is sort of philosophical, which means that we need to denaturalize psychiatric concepts. In the sense that we examine them, we must recognize that the plural discourse of psychiatry, when speaking about our mind, is speaking about our essence and our natural brain function, as if it has a scientific basis to it. I think we need to continue to challenge that and to open up space for counter-discourses that question these ideas. This way, culturally, we can be open to thinking differently.

The first step is kind of like shaking things up, so we don’t work with assumptions in the back of our mind, such as “we are really talking about a brain disorder, that it’s purely a chemical imbalance,” or things like that. We need to continue to shake that up, and I think people are doing important work on that front so that we’re open to other ways of thinking.

And then I think there should be the institutional change that guarantees the full and effective inclusion of people with psychosocial disabilities, or however, they are defined, but also offers protections against co-option, marginalization, and discrimination within those spaces.

This change must take into account the importance of having people with specific experiences from the local community, culture, and religious background involved in the research. It’s not like you can pick someone with a psychosocial disability from the Global North and have them be part of a panel on Global Mental Health in your local area, like Mexico City, and assume that they’ll know everything. They must also be able to correct for all the misconceptions that occur when applying a Western psychiatric framework to Central America, right? So we also need to be thoughtful about that, and I think that’s something we can do legally, structurally, and institutionally.

We can put safeguards in place and make guarantees about what needs to happen, who needs to be included, and what boxes need to be checked in order for research to be funded, to be in compliance with the UNCRPD, and to align with the Human Rights framework that’s been endorsed by whatever NGO or foundation that is funding the research or the university institutional review board. There are practical things that have been done and can continue to be done to make those kinds of spaces possible and to challenge the discourse in the places where it’s being constructed and developed.

 

Arroyo: With what you mention, it’s important to give people the chance to participate in these spaces while being aware of the position that people are taking. As in the example, a person with a psychosocial disability from the Global North won’t be the same as a person from the Global South. And I’m starting to think, how can we avoid individualizing these situations again? Because human rights advocacy and the Convention talk about reasonable adjustments, and all that kind of stuff has to be made specifically for every case and situation. It’s not the same adjustment for one person as for another, but rather it takes into account the social context.

I’m thinking about that scenario in a really superficial way. Maybe someone could say, “It’s the exact same thing; psychiatry says that mental health is an individual situation that requires individual treatment, and the Convention says exactly the same thing, but in other words.” So, I know it’s hard to answer, but what do you think about that situation, and how can we avoid that comparison?

Karter: It’s an essential question that underscores a paradox: the human rights framework, though rooted in Western enlightenment and the philosophy of the Global North, has become a powerful tool for advocating rights and inclusion. But like any framework, it reveals certain truths while obscuring others, making some issues clear while leaving others hidden and challenging to advocate for.

Consider the dilemma of harm versus benefit, which might echo psychiatric discourse by asking, “Do the side effects outweigh the benefits?” It’s vital that we continue to interrogate the limitations of the Human Rights framework even as we employ it for advocacy. We may say, “We’re using this framework to improve lives and legal rights,” but we must also recognize that we might be missing critical perspectives within this very approach.

What are the known unknowns? What aspects are we failing to consider because our framework doesn’t even allow us to recognize them? We must actively seek out these blind spots, examining the framework’s edges and asking questions about its limitations, much like you are doing. One notable limitation you’ve identified is the persistent focus on the individual.

The complexity of mental distress requires a multifaceted exploration, considering everything from history, social environment, politics, economics, community, and religious beliefs, to family dynamics. These factors interplay in profound ways, shaping our experiences and perceptions. The existing frameworks, focused on individualistic concepts, struggle to grasp these intricate relationships. We are in desperate need of frameworks that can adequately reflect this complexity, even though they may be messy and difficult to apply.

Prominent thinkers like transcultural psychiatrist Laurence Kirmayer and sociologist Nikolas Rose are already exploring how to develop concepts that embrace this complex interplay. And indeed, these frameworks are often inherent in mad studies and the consumer, survivor, and ex-patient scholarship as well. They are striving to understand the multifaceted influences that shape a person’s unique experience of the world in a specific historical and cultural context.

As we improve our ability to articulate these nuanced frameworks, they have the potential to transform our understanding, even within the constraints of the Human Rights framework, which itself is built on the concept of individual rights. The challenge is vast, but the quest is vital; we must strive to understand the human condition in all its intricate complexity without losing sight of the broader social and cultural landscape that shapes and defines us.

 

Arroyo: From what you mention, I recall that in the article “The Poison in the Cure,” you discussed the neoliberal system. You emphasized that it’s not merely an economic system, but one that constructs subjectivity, shapes the way we relate to one another, and instills the idea that individuals must take care of themselves. This leads to constant self-monitoring, creating a scenario defined by what could be called biopower.

The pandemic, I believe, has brought this situation to a boiling point. I can’t speak for your experience, but here in Mexico, I was required to fill out a daily report, monitoring my symptoms, such as feverish feelings or other signs of illness, and whether I had received the vaccine or not. This monitoring seems to disguise the underlying notion that the problem lies with the individual rather than society. It promotes the message that if you don’t care for yourself, no one else will, and this thought leads me back to the contemporary emphasis on self-medication.

Currently, we’re witnessing significant discourse on wellness, mindfulness, life coaching, and related concepts that place complete responsibility on the individual. The prevalent message is: “You have the opportunity to change yourself.” Often, this is coupled with the idea of self-fulfillment, productivity, and striving “to be more.” These perspectives have a substantial impact on how we think about our mental health.

In this context, I think that recognizing psychosocial disability allows us to acknowledge and say, “Well, I’m not feeling good right now; I’m feeling stressed, anxious,” etc. It gives us the opportunity to genuinely experience and explore the wide spectrum of emotions that psychiatry often attempts to suppress or manage in some way.

Karter: There are many significant points to consider. First, operating within the neoliberal logic, we see the ideology that fuels capitalism and free markets. This ideology emphasizes individuals who must make rational choices in a market that decides winners and losers. It produces a certain type of person, forms of subjectivity, that permits this ideology to continue to function, allowing societies to “work.” But here, “work” doesn’t necessarily mean producing well-being for people; it means keeping the system running, at least until it destroys enough of the planet that it ceases to function.

When we talk about this individual tendency, it’s essential to recognize that we’re swimming against a potent current. Living in neoliberal societies, it’s challenging to think of ourselves outside of those terms. It’s like escaping history in a way; it’s exceptionally difficult.

The pandemic example is a good illustration of this. One way we can approach a pandemic, or spreading diseases, is through hyper-individualization and hyper-individual responsibility. We’re all required to self-monitor continually, and the government assists us in this by providing systems that enforce this self-monitoring and individual accountability for disease spread.

But we can also envision a world where we think more about the conditions of the environment, the political and community conditions, and the overall health of the community. We might imagine more green spaces, more outdoor environments, and governments providing universal income to prevent people from having to expose themselves to dangerous situations to earn money.

We could think about it differently. The psychosocial disability framework invites us to consider what material and ideological environment produces experiences of disablement for a community or an individual. By articulating these thoughts, they become more susceptible to challenge and change.

If we instead focus on the disability within the individual, thinking about changing what’s inside the person through medication, psychotherapy, or mindfulness, we miss what needs to change ideologically in the community, country, and world. We overlook changes needed in the physically built environment, such as access to green spaces, community areas that lead to healthy relationships, and rights that prevent discrimination, oppression, or bullying.

This shift in perspective, while seemingly simple, can reveal pathways toward challenging and transforming our existing structures.

But we must remember such a transformation is not aligned with the goals of neoliberal ideology. It may create communities that do not fit neatly into existing molds, that challenge rather than comply. And in that challenge, in that willingness to think and act differently, lies the profound opportunity for change.

 

Arroyo: I remembered a quote you mentioned in both “The Poison in the Cure” and “Inclusion Toward Transformation.” It’s from Rose and asks, “What kind of creatures do we think we should become?” You present this question as one that should challenge us, moving us beyond merely changing ourselves and leading us to consider how we might transform others and effect collective change.

I also wanted to mention an example you used in the article, where you discuss the Syrian refugee situation. You describe it as not merely a “loss of their minds, but a loss of their worlds.” Yet, the only alternatives we offer are medication and therapy, without any effort to change the material situation of the people. It’s as if we’re saying, “The problem isn’t that you had to leave your country because it was being bombed; the problem is that you’re sad, so as long as you’re not sad, everything is okay.” This leads me to ask, do we really want to become creatures that deny these situations and the experiences of others?

Additionally, and I recognize this is a complex question, what role should mental health professionals take in this new scenario and context? Should they participate within these new frameworks and counter-discourses, or should they step aside and let those with psychosocial disabilities and advocates for human rights take full control of the situation?

Karter: Such good questions, and it’s all very thought-provoking. I want to acknowledge that the quote, “It’s not that they lost their minds, but that they lost their worlds,” comes from psychiatrist Derek Summerfield, who’s done really important work in pushing back against the Western conceptualization of depression, particularly in these combat zones.

So much to say: What role should mental health professionals play? In attempting to answer one question among many – what kind of creatures do we want to become, should we become, or would it be ethical for us to become – I wonder if having psychiatrists, psychologists, and psy disciplines involved in such a large way is good. I don’t think it is. I don’t think our disciplines speak to that question with new answers, complexity, or ethical understanding that other disciplines like literature, history, sociology, and anthropology might offer.

Yet, probably because psy disciplines fit so well within the neoliberal worldview, we’ve been afforded a very large megaphone to speak to these questions. Children, youth, and adolescents today are increasingly invoking psychological and psychiatric language to understand themselves and their relationships in a way that was unprecedented even a generation ago. I think the reason for that is because it fits with the prevailing ideology rather than challenging it. If our disciplines are being called to and given that megaphone, I think it’s important to have those within these disciplines think about the problems as loudly as possible and try to influence that discourse.

The question of what kind of people we might become makes us think about the ecological collapse of our planet and the disproportionate impact on humans in different positions. Are we capable of becoming the kind of beings that can face the coming tragedy, the destruction of our planet? If we are, what does that look like, and how do we get there? We must transform our psychological understanding of the self towards a more relational-ecological understanding of the human being.

We must move away from a capitalistic-neoliberal understanding of our role in the world, where we are not just extracting and exploiting for our benefit. We are mutually constituted by one another and our engagement with the world, the animals, and our whole ecological niche.

This transformation would take more than a change in psychological discourse; it would also involve the arts and humanities in articulating a different way of being a person and making those kinds of subjectivities accessible and possible, especially for young people.

In terms of the role of psychological disciplines, psychologists, and psychiatrists in the movements of people with psychological disabilities, I think it’s complicated and fragile. As we talked about earlier, we can agree to come alongside people with the understanding, “I know something; some of those things might be helpful, and some might be harmful.” We need to know more about what they need, how we can join them, and what we should not do. We must be able to form a relationship where they can let us know when we’re getting in the way, and we can let them know when we see something they might not have considered. We must do this from a place of mutual respect and understanding, not assuming that everyone wants that kind of person to come and accompany them. But when it’s welcome, we should think about how we can fill that role.

 

Arroyo: So, the participation of mental health professionals should always take the form of a question: “What can we add? Should we leave?” We must always try to establish this kind of dialogue when the response is expected to come from the other party.

 

 

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MIA Reports are supported, in part, by a grant from The Thomas Jobe Fund.