Rights Based Global Mental Health and Social Exclusion: An Interview with Ursula Read

Ursula Read is a research fellow and associate at King’s College London. She holds a Ph.D. in anthropology from University College London, where she studied family experiences of mental illness and help-seeking and Ghana. Currently, her research addresses Global Mental Health, and she utilizes participatory research methods to explore the relationship between mental illness and social exclusion internationally.

Her recent work focuses on mental health care in Ghana, drawing attention to the need for rights-based approaches to mental health care. In doing so, she questions the movement for Global Mental Health: asking what this movement is doing currently and imagining what it could become.

Her research brings to light how those in the Global North and high-income countries can overlook what rights-based approaches to mental health care may actually look like when incorporated into Global Mental Health and enacted on the ground. She also is deeply concerned with the structural and social determinants of health and mental health and their interconnection with community resources, places of worship, faith, and overall health promotion.

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

Samantha Lilly: Could you tell us more about what led to your geographical interest in Ghana as a researcher from the UK?

Ursula Read: I initially trained as an occupational therapist. That’s how I ended up working in the mental health field. I was working in parts of London with an over-representation of people of African and Caribbean heritage in the mental health system. It’s been a big question, really, as to why that might be, and various hypotheses have been put forward. Obviously, racism plays a big role, as does structural discrimination and inequalities generally.

So that opened my interest. I began to look at how mental health services operate in a country without many mental health services. In the UK and America, we’re very used to thinking of psychiatry as this big kind of monolithic organization that has a lot of state-sponsored power to incarcerate people against their will and medicate people. And, of course, there is a lot of protest against that and a lot of resistance from organizations like Mad In America and the World Network of Users and Survivors of Psychiatry. So, that was kind of interesting to think about what happened in those places where psychiatry wasn’t so dominant, where perhaps people made more use of traditional and faith-based healing, and where there might be different ways of thinking about mental health and what mental illness is and how you might help people with those difficulties.

I was working alongside a lot of nurses from Ghana. I met Victor Doku, a Ghanaian psychiatrist, and it was those kinds of networks that really led me to think about Ghana as a place where I could do that research.

 

Lilly: You worked as an occupational therapist and now as a researcher. How do you see these different roles?

Read: I started working in the health and social care fields, and then I trained as an occupational therapist, working in hospitals and community services in London. It really had a massive impact on me to think about my own mental health and my own ways of making meaning. I come from a religious background, so my Christian family and faith were very important in how I was brought up. So, all those kinds of big questions came up.

I also like how the occupational therapy approach thinks about illness not as your pathology but as how it impacts your being in the world. And that, I think, is to me very, very potent.

The other kind of crossover, between occupational therapy and anthropology, is around the methods. And the method is to be with people and to participate in what they’re doing. So, if I were an occupational therapist, I would go into the kitchen with people and cook with them and see—for example, if they had cognitive problems, memory problems, or problems with focusing or attention—how that impacted how they prepared a meal. When I’m doing my research in Ghana, I’m going with people into the kitchen, and I’m looking at the same questions, you know? I’m not looking at it with a kind of clinical instinct, but I am asking what supports do you need to ensure that you’re getting a meal. I am asking how the illness has impacted that, but I wouldn’t necessarily think about how to ameliorate that situation. That would be more to do with the people who support the family or the mental health workers or whatever.

So it is a kind of ‘being with,’ ‘being alongside,’ and understanding what it means physically and bodily to be in these kinds of spaces as well—I find that an incredibly powerful method. I think that method really enriches the data you’re able to put together as a researcher, aside from the interview space, which is a kind of performative space and very constrained in some ways.

 

Lilly: Tell us more about how power dynamics impact your research encounters in the UK and Ghana.

Read: I think maybe I can illustrate this with an example. For many people in Ghana, psychiatry, the vocabulary of psychiatry, is quite new, and the medical model can, for many people, be a way of making sense of their experience. It takes out a lot of moral judgments that can come alongside ideas of what mental illness is. Often it can be linked to ideas of, you know, taking drugs or doing something spiritually questionable, like witchcraft, or being cursed or all these kinds of connotations, which can be very stigmatizing. And so, a medical model of mental illness, for many people I know with lived experience of mental illness in Ghana, means that they don’t have to deal with all of that stigma. They find it’s a more neutral way of thinking about it. “I’ve got an illness just like any other illness, and I can take medication for that.” Now, obviously, I know that from the history of working in mental health services in the UK, and knowing what I’ve read from the US, that many people with lived experience in those settings contest the medicalization of their experience because the medical model has been stigmatizing and has also sidelined people making sense of their mental illness through spiritual language or other ways of being.

There is space to open up this kind of conversation to think about different ways of making sense of experience and bringing people into conversation across these geographical boundaries—because the question of what mental illness is remains unresolved. In the Ghanaian context, I sometimes see that the education around mental illness often presents things as certainties. And, you know, we like certainties, and public health messages are supposed to be clear.

 

Lilly: Do you find that there’s a desire to be diagnosed with a mental illness in Ghana? Is that something you’ve experienced?

Read: I feel I’m uncomfortable talking on behalf of people, but I think there are many people I’ve spoken with in Ghana for whom receiving the diagnosis has been a big relief because they have been going through these experiences and not really knowing what’s happening. And, you know, it’s caused all sorts of problems at work, in daily life, in their relationships, and their families. So getting a diagnosis and talking with a psychiatrist who can help them make sense of some of what’s happening within that medical frame has been very helpful in a time of huge confusion and ad distress.

Nonetheless, I think it’s true to say that many people I meet are very unhappy with the medication. The drugs that are used to treat psychosis have really terrible side effects and are really problematic. People find that they’re sedated, and the sedating can impact your sexual performance. They can make people feel cut off from their emotions. So the idea of taking medication indefinitely is horrific to many people.

As an occupational therapist and also as a researcher, I’ve sat with people who have been really devastated that when they stopped taking the medication, they had some terrible symptoms—hearing voices or really frightening experiences—then feeling like, “God is this it? I’ve got to keep taking these meds?” And it isn’t easy.

I think there’s a real need to have honest conversations about these issues. Some people have also queried that the level of research that goes into treatments for mental health is nowhere near the same level that it is for physical conditions. So, there are minimal options, really, even in terms of something as basic as medication.

In brief, I think the medical model is helpful for some people to make sense of what’s happening. But I think what’s not helpful is when that drowns out other ways of making sense of experience. It erases all the questions, unresolved issues, and issues still being debated and researched today.

To go back to these questions about power, medicine has massive power compared to other ways of approaching mental illness. And you can see that even in the health systems that international aid organizations fund. They fund medical health systems. They fund psychiatry. They fund psychology, perhaps, sometimes. But, they don’t fund traditional healers. They don’t fund faith-based healers. The state does not sponsor that. Those are private enterprises.

I think it’s important to remember that, of course, places like Ghana and Nigeria, and other countries have their own histories of psychiatry. For example, psychiatry has been around in Ghana for over 100 years. Starting in the colonial period and then in the post-colonial period, there were three psychiatric hospitals in Ghana. Two were built in the post-colonial period. And people were thinking at the time of new mental health models that were not like a colonial asylum or a prison but was more of a therapeutic kind of space.

It’s important that we don’t just think of psychiatry as something that’s been exported from the North and taken to the South. In Ghana, because for so many people, faith is so important to them— even the most diehard psychiatrist will also go to church on a Sunday, pray every day, read the Bible every day—the faith is present in ways that it may not be for many people in the US and the UK. And so, even when people are working in psychology, psychiatry, and mental health, their faith is also there. So, I think this is one of the things that facilitates working alongside traditional and faith-based healers. I think there is a lot of respect for the work that some of these people do. On the other hand, there is also a healthy kind of critique because there are healers who are very exploitative. And obviously, there are a lot of concerns about the use of chains and shackles and other restraints. There’s a lot of mistreatments that go on in some of these places as well.

There are lots of complicated ethical issues to consider. We’ve been researching how traditional and faith-based healers and mental health workers are working together. And the nurses that we were working with in Ghana very much saw it as a balance between the two. So, as mental health workers, they were offering a kind of medical framing and psychiatric drugs but also thinking about how they could support people with their livelihoods and things like that. They were aware of the social factors that were also difficult for people—poverty is a huge part of people’s lives in that part of the world. But then they also recognize that faith-based and traditional healers have expertise in the spiritual realm and that they have insight into these other aspects. The spiritual realm was incredibly important for both patients and their caregivers in making sense of what had happened. And this is, I think, something that we can learn from. It shows how these different approaches can work together.

 

Lilly: You had recently written a piece called Psychiatry Beyond Fanon. Will you tell us a bit more about it?

Read: The inspiration for that piece came after an article published in The Guardian, which is the UK’s leading progressive newspaper, that had a lot of these pictures of people in chains in Ghana. The whole photo series accompanied this article, and it was talking about Ghana as a mental health void where there was just no access to psychiatry and people were chained up. And I felt very disturbed by that piece. Because I felt it presented Ghana as a place where nothing had ever changed and where there were absolutely no mental health services whatsoever—where everybody was in the dark ages, primitive and just in stasis. It brought up all sorts of tropes of Africa being backward and out of step with nothing changing. So, back when the articles were first published, I got together with a load of people in Ghana, including the head of the mental health services there, and loads of other people, and we wrote to The Guardian. We said, look, you know, there was a misrepresentation of the facts. Even the number of psychiatrists they used was wrong. So, we corrected those, and we said that this was a misrepresentation of Ghana because they had really expanded the number of community mental health workers quite dramatically over the last 10 years. We felt we understood the need to highlight these injustices, and we felt there was a bigger story to tell.

The Guardian completely ignored our letter, which I felt was quite shocking. If the head of psychiatry in Germany, for example, had written to The Guardian, would they have ignored it? I don’t know. But anyway, it was Ghana, so they did.

I think it’s important to say that, of course, I’ve met many people who have been chained in Ghana, and it is horrific. And I don’t want to in any way minimize the suffering that people have gone through. But, still, I think it’s not the only story and that there are other people I have met who are faith-based healers who genuinely care for the welfare of the people who come and use their services, and they do a lot to try and support a very stigmatized group.

These are all abuses in one way or another, and some try to justify them. But we don’t work hard enough to find other ways of approaching these situations. For example, our Mental Health Act permits you to take people against their will to the hospital in the UK. In an ideal world, we want to find some way where that wouldn’t be necessary. We’re at a bit of a crisis point at the moment, actually, because the cuts in mental health services mean that it’s much more likely that compulsion will be used. After all, people are not getting support in the community, and things get to a crisis point. When that happens, it’s much more likely that you’re going to use the Mental Health Act to bring people into the hospital.

I think that’s in my work in a way. That’s what I like to do; try and think of this as kind of the big issue for all of us to grapple with. And I think that we are all learning together how to deal with the central problem of being human.

 

Lilly: How do you define rights-based approaches in your work, and how does faith-based healing fit into rights-based approaches?

Read: Yeah, it’s an excellent question because I think rights have become central in the discourse around mental health, with the World Health Organization and the UN. There’s a big push to improve rights in mental health. But, often, we tend to think of rights in terms of freedom from abuse. So, particularly in Ghana, we think about rights-based health care as getting rid of the chains, getting rid of the restraints, improving access to mental health services, and evidence-based services. We tend to focus less on what has been called positive rights or the rights to be included.

The research I’ve been doing with the Wellcome Trust, the Mental Health and Justice Project at King’s, is around Article 19 of the Convention on the Rights of Persons with Disabilities. Article 19 talks about the right to live independently and to be included in the community. When we think about rights-based health, mental health care, we often don’t think about that.

We don’t think about the right to have a decent job, the right to family life. A lot of people that I know with mental health issues don’t have kids. They are not married. And you know, in a culture like Ghana, that’s quite unusual. And, I have met women whose children have been taken away from them because they have a mental health problems. So, these are all ‘rights’ issues. And I have to say that some great NGOs in Ghana are really doing a lot to push for rights with civil society organizations. It’s interesting, actually, because the organizations that have been focused on gender equality and domestic violence have become involved in seeing that these are also issues relevant to mental health.

The rights-based approach would be looking at these issues around social inclusion, around participation, around creating enabling environments so that you have the supports that you need to make decisions about your care, to live with who you want to live with, to work and have a meaningful role in society. These rights are often not available to people even if they do not have a mental health issue. There have been big protests in Ghana because there’s huge youth unemployment. There are not many work opportunities. There’s rising inequality in Ghana, as there is all over the globe. And obviously, the pandemic has really increased those inequalities. I think we really are at a very critical point, actually.

We’re also working on another project thinking about how to have a more disability-inclusive recovery from the pandemic—where we don’t just go back to normal, but that we think about how services, societies, and communities can be more inclusive for everyone and be more accepting of difference. As human beings were not always very good at that.

 

Lilly: How do you believe that we can continue to move forward with Global Mental Health in an ethical and efficacious way, especially as inequality arises, especially with the history of Global Mental Health as a field?

Read: I think there are big questions for Global Mental Health. I think one is around decolonizing Global Mental Health and shifting the power dynamics. At the moment, it’s so frustrating because of the way most of the funding networks are set up. Typically, and this is how all my projects are, the funds come from the UK or funders in the UK, and then they get sent to our partners in the Global South. Of course, it’s a really colonial way of doing it. All of those kinds of governance strategies, all the funds, are flowing one way, and that’s not right. And that really must change. We need to see the funding sources coming up within countries to fund their own research without it having to come via institutions in the North. I think these are critical issues, the funding, how funding is set up, how it’s organized, and where it comes from that really must change.

 

Lilly: Is there anything more that you want to share?

Read: The questions that people always ask me are, what will your research do to help us, to help Ghana? I think it is totally the right question to ask. The other question is more of a personal one, like, how can you support me? How can you help me? I need medication. I want to get a job. I need to earn an income. So, these are the kinds of questions that all of us who work in research need to address.

Because I have worked in mental health services, and I know some things can help, I think it’s often not enough to just intellectualize around these questions and theorize around these questions. It’s not satisfactory to just export models that we have, scale them up, and expect that they will work. We have to be humble about what we know and really listen carefully to what people tell us about what might help or what they know because everybody I’ve spoken to in Ghana is the expert on their lives and what’s happening to them. My job is to listen and learn from what they tell me. And hopefully, I try to share some of that with people in Ghana, but also outside.

 

 

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