Helen Spandler is a Professor of Mental Health Studies at the University of Central Lancashire in the UK. She is the managing editor of Asylum, a non-profit radical mental health magazine.

She currently holds the Welcome Trust Investigator Award and is the principal investigator on a new research project about the role of MadZines (comics and graphic memoirs created by people with lived experience of psychosocial disabilities) in contesting mental health knowledge and practice.

With over four books and 40 publications to her name, professor Spandler has applied her expertise to a wide range of concerns. She has written about the psychiatric survivor movement, alternate interventions such as therapeutic communities, psychosocial disability, and grassroots activism concerning patient rights.

In this interview, she discusses the importance of placing human suffering before theoretical preferences. She argues that understanding truly listening to psychiatric survivors requires us to get accustomed to uncomfortable truths.

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

Ayurdhi Dhar: Could you give our listeners some idea about your approach and what brought you to these issues?

Helen Spandler: This area has defined my life. I grew up with mental health issues in my family, and I’ve had my own struggles. I worked in mental health services for a while, mostly in advocacy. I have always had an instinctively critical approach to psychiatry and psychology. My main point of reference has been the views and experiences of psychiatric survivors, which is how I came to this field.

My general approach started as being more ideologically informed, but it has become less so; I’ve become critical of ideologically driven critiques. There are no easy answers to the complexities we are working with in this field. I got into research to understand some of the complexities I was facing trying to support family members and friends. Working in advocacy never was quite as straightforward as I hoped. I found lots of contradictions and conflicts I hadn’t anticipated. So, I’ve always been interested in looking for uncomfortable truths, how things might not be as they seem.

I am increasingly taking a non-binary approach to these issues instead of a simplistic either/or one. I am really suspicious of any approach which is too reductionist. We usually talk about psychiatric reductionism or biological reductionism, but social or psychological reductionism can also be problematic. I’m increasingly suspicious of anything that tries to reduce complex human dynamics and suffering to neat binaries and solutions.

We can easily slip into that, particularly as mental health professionals — you’re either a social worker, psychiatrist or psychologist. I take a politically pragmatic approach that centers on human suffering — what’s the best thing we can do in this context to reduce human suffering and support ourselves and each other? This centers psychiatric survivor knowledge rather than looking for the big theorists. Looking to what we might call organic intellectuals, people who are psychiatric survivors or activists who’ve learned their own knowledge through experience and activism. This knowledge is just as theoretical. It’s often psychiatric survivors who bring up the complexities and show that some of our theories and ideologies don’t fit.

 

Dhar: Yes, Gayatri Spivak writes that when you actually listen to the subaltern, you will never get simple answers. There is a lot of heterogeneity and complexity in what people want, which goes back to your article that says that some psychiatric survivors want more psychiatry and some less. You said you are moving away from ideologically driven critiques. Could you clarify?

Spandler: Anything that has a totalizing narrative, whether it’s feminist, Marxist, anti-psychiatry, or whatever– all those are really important, but the problem is when we start with the theory rather than with the practice or conditions on the ground, the material conditions of people’s lives. It’s all about context. The problem is when we have an ideology in mind and impose it on the world and human suffering, including the recovery or trauma models, which in and of themselves can be helpful.

We like certainty, particularly in mental health services. I teach social workers, and they want to know what theory do we use for this? I often break that down — what really matters is being alongside somebody, trying to understand their lives, what they need at that time.

 

Dhar: There has been a push to see psychological suffering as a disability using the social model. The social model of disability says that people may have impairments, but they’re disabled because of barriers in society. Could you tell us what are the consequences of this disabled identity for a person who uses mental health services? For this person who is suffering, what are the benefits or the complications of identifying as disabled?

Spandler: This is where the context of people’s lives is really important. When I started teaching social workers about 15 years ago, they quite liked the social model of disability; I like it too. It’s really helpful in terms of shifting our consciousness — stop thinking of the person as the problem and look at what we can do to change the context. But what many social workers did was take the social model and just put it on top of what they saw to be unproblematic psychiatric concepts.

So, they took it as read that somebody had this thing called schizophrenia and the social model meant that we needed to look at their housing and employment. That’s a good start, but it also meant that the psychiatry and diagnosis were not problematized. It was a kind of surface understanding.

Then, the UN Convention on the Rights of People with Disabilities came along, and a sizeable number of psychiatric survivors thought this is useful. If we define ourselves as having a disability, then we can have rights. But some psychiatric survivors had problematized that many years ago and said that there might be difficult consequences for people.

The social model of disability has a distinction between disability and impairment. So, what is impairment when it comes to mental distress? The social model was driven by people who had longstanding physical impairments, but with mental distress, we don’t necessarily want to say that because you get this psychiatric diagnosis, you will have an impairment for the rest of your life. It could be quite problematic to impose that.

But in relation to people’s lives, it’s always context-driven because framing it as a psychosocial disability can be helpful in some contexts and unhelpful in others. I co-edited this book trying to understand whether the social model of disability was helpful or not to mental health politics? That turned out to be a stupid question because it’s yes and no. We need to work with it and try and understand the consequences for different people, what they need and want in particular contexts.

Psychosocial disability can help with getting social security benefits or welfare payments. The UN convention is important around asserting rights. For people with psychosocial disabilities or psychiatric diagnoses, it is helpful to be able to say, “we are included in this convention; therefore, we can demand that we don’t get forced treatments.”

But it has some other consequences that might not be helpful. Some people felt that we needed a parallel social model; maybe psychiatric survivors need their own. There are lots of helpful things you can do with the social model. For example, respecting neurodiversity and understanding people as maybe having psychological diversities. What we need to think about is how do we adapt society to work with those diversities.

 

Dhar: What would using this kind of a disability model mean for psychiatric diagnosis, and where does it fit with the DSM and ICD?

Spandler: It could fit quite well if you did what a lot of my social work students did, which was to say, “okay, this person has this diagnosis, and we need to adapt to that.” Most people using a social model would be more critical, which is one reason why the psychiatric survivor movement has been more cautious. A deep social model starts to interrogate those very things that we call diagnoses. So, you can have a sort of surface, weak social model, and a sort of deeper social model as well, which kind of gets into how those things get constructed.

It’s also all about the context of implementation — how are these things implemented? Joanna Moncrief (a UK-based Critical Psychiatrist) has written about a drug-centered approach to psychiatric medication rather than a disease-centered approach. She means that rather than seeing psychiatric drugs as treating illnesses, we can see them as having particular effects that may or may not be helpful in particular contexts.

We can say the same about diagnoses as well. In some contexts, they have particular effects that might be helpful, and in other contexts, unhelpful. There are many polarized debates going on about whether we should get rid of psychiatric diagnosis completely or not. It’s an unhelpful binary. If we think about people’s lives, circumstances, and needs in particular contexts, that can shift and change.

 

Dhar: This reminds me of how people use psychological formulations; some use formulations with diagnoses and others without. It should probably depend on the person (client) in front of you.

Spandler: It’s obvious when you think about it, but it gets lost. There was an interesting thing on social media recently – someone was saying how her mental health team started using trauma-informed formulation rather than diagnosis. They started writing these complex formulations about her history, which included personal stuff about her abuse that she didn’t want to be shared across different teams. She felt like she lost control over it.

The mental health workers were obviously thinking, “Oh, we’re being really trauma-informed and doing this formulation thing,” but the woman said, “Can you give me the diagnosis back because although I didn’t particularly like it, it was better than telling everybody about my history that is very private to me.” It was really an insight for me into the consequences of quite well-intentioned moves that can have negative consequences. That’s what I mean by listening to psychiatric survivors.

There was another example. In the UK, the British Psychological Society recently put together a report on Depression. It was a report that I would have completely signed up to a few years ago; it’s very socially informed. It says we need to problematize this idea of depression as an illness, and we need to see it as an experience — lots of good stuff. But then I read a blog from a psychiatric survivor who had read the report, and it absolutely devastated her because she’d spent her whole life being told it was all in her head and that she just needed to pull herself together. She’d experienced severe clinical depression over many years and really struggled to accept her experience, understand it, and get validation and support for it. Then she read this report, and Depression was all inverted commas (quotes ” “) like it didn’t really exist… I hadn’t thought about how that feels for people to have their experience in inverted commas. I’ve always done that — put mental illness in inverted commas because I think it’s a problematic concept, but I’ve never really considered the impact on somebody. That’s why I say that responding to human suffering needs to be our foremost concern.

 

Dhar: Tanya Luhrmann wrote about this peer counselor who has such a difficult time once being an outsider and now an insider to the mental health system — being involuntarily hospitalized and now having the keys to those doors, fighting against “the man” and now being “the man.” These things are complex even though we would like simpler answers. What do you think would be the consequences, the benefits, and the complications, of including people with psychosocial disabilities in research and policymaking? How do you think this would transform psychiatric practice?

Spandler: People say, “we just need to hand everything over to service users and survivors” That’s great instinct, obviously. That’s where we should be starting, and we’re nowhere near that. But there’s a lack of honesty about some of the challenges of doing that authentically. Psychiatric survivors are going to differ and disagree on many levels.

For example, something as controversial as ECT, you can get psychiatric survivors who are convinced that it ruined their lives, but also those who are convinced that it saved their lives. You can’t get more different than that. What do you do? Do you say, “well, I don’t like ECT, so I’m just going to pick the ones that don’t like it, or I think ECT is good, so I’m going to pick…” If you are going to do this seriously, you have to include both perspectives — that’s what I mean about uncomfortable truths.

There’s a lot of silencing around some of the dynamics involved in survivor politics. There’s a tendency to oversimplify — all we need to do is give them control. There are lots of positives about that. If we did it honestly and dealt with the diversity of views, that would lead to asking difficult questions because what psychiatric survivors do brilliantly; they ask those really challenging questions.

We’ve published lots of this stuff in Asylum [magazine]. I remember one fascinating piece about prescription abolition. A survivor said, let’s abolish the prescription system and put it into service users’ hands, maybe collaborating with pharmacists — get rid of the people who prescribed the drugs. That’s a really challenging thought — why is it that certain people have control over administering these things and others don’t? It really pushes our thinking, and that’s what psychiatric survivors do.

My first piece of research was talking to young people who self-harmed; it challenged my thinking – why did we assume that self-harm is necessarily in and of itself a bad thing? I know things have shifted greatly since then because of the work of self-harmers and psychiatric survivors. If we don’t sweep difficulties under the carpet, those difficult questions can be addressed. The problem is, with critical professionals, psychiatric survivors, and with all of us, we often reproduce those dynamics that we’re trying to sort of struggle against…

It doesn’t mean we shouldn’t do it. It totally means we should, but we have to do it with more open-minded honesty. We have to invest in working with those difficulties, not just say, “Oh, we’ll have a couple of people on the board, or we’ll just hand the money over” — it’s a lot more complex than that.

We need to learn from different experiences and movements, for example, the neurodiversity movement.

 

Dhar: It is such a disservice to service users and survivors to expect that they all agree with each other and have one homogenous voice, almost condescending to think there is no diversity in their thought and experience.

Spandler: We should celebrate it. Asylum magazine tries to open a space for that diversity because many marginal voices still aren’t heard. They don’t feel represented in the mainstream or the critical alternative. We really need to hear that diversity to build something better for all of us.

 

Dhar: You write about the importance of compassion in mental health care, but you have a different take on compassion. We think of compassion as this internal quality within an individual, but you say it’s just as much dependent upon structures, contexts, policies, and relations. What is it specifically about our current mental health culture that makes it difficult for mental health workers to show this compassion, to connect with clients even when they really want to?

Spandler: There’s the big obvious stuff, the fact that we have a neoliberal capitalist system that individualizes us and our problems, pits us against each other, sees us as the problem, and buying more as a solution. We’re never good enough, so we keep buying things to make ourselves feel better.

There are huge resource issues in mental health services, and services have become more and more individualized. There are fewer community-focused projects and services. I was always passionate about collective community-type provisions, like therapeutic communities, which aren’t a panacea, and there are lots of problems with them too. But in the collective provision, people could support each other and create the context in which compassion could happen.

It’s not that there is either compassion in the individual or compassion in society — you can’t have one without the other. The problem with our current society is there’s all this talk about self-care and empathy. Still, it often boils down to buying more stuff for yourself — “Oh, you deserve it, you’re worth it!” rather than a deeper sense of compassion which is about connecting with our own suffering and the suffering of others.

We have a broader culture that doesn’t really want to know about people’s suffering. Of course, there is much more talk about mental health issues now, but we don’t really want to know the depths of people’s suffering. Until we’re able to do that as a society and as individuals, it’s very hard to create more compassionate contexts. It’s a big ask because I’m really asking for a change in society. We have to be the change we want to see in the world.

I guess mental health services are increasingly uncompassionate. It’s the same with all health services in the UK. Our National Health Service is getting battered. It’s threadbare now. People working in them are struggling to hold their heads above water. It’s very hard to be compassionate to others if you’re struggling with workload, with no support for yourself or colleagues, no supervision, no space.

In social work, we used to teach relationship-based social work practice, and now it’s really all about gatekeeping, assessing people, paperwork. Compassion comes from being alongside somebody and being with them. If you’re in front of a computer or filling in paperwork all the time, you cannot generate it. There’re lots of ways in which we are increasingly distanced from each other.

 

Dhar: Let’s change gears. You’ve written about lesbians as psychiatric survivors, and how many of their stories remained unknown. What was it that you found?

Spandler: We know homosexuality used to be classified as a mental illness in the DSM. Some psychologists tried to correct people’s homosexuality in a simplistic behavioral way. You view pictures of people of the same sex and get an electric shock or were given drugs to make you sick. Often men would go through the criminal justice system if they were arrested because of “homosexual activity.” They were offered a choice of either being criminalized or having treatment, and some of the treatments were aversion therapy. I was always fascinated by what happened to women [who weren’t criminalized for their sexuality]?

Sarah Carr and I did archival research to find out about this in England in the late fifties and early sixties. These were the uncomfortable truths we were looking for. Part of us wanted to find stories because we wanted to go “Yeah, see, they did it to women too! How horrible, these people are making them do this!” but also we didn’t want to find them and know that women had been through this horrible experience.

We found a small number of psychologists and psychiatrists who were prepared to treat homosexuality in women through aversion therapy and other treatments, but they were often experimental.  We found about ten examples of women who had experienced aversion therapy and some who had other forms of treatment. We felt these were really important because these stories haven’t really been heard.

We also found similar numbers of examples of women who had gone to see the psychiatrist or doctor to say, “I want to be treated for this because I feel so ashamed and guilty and unhappy about my sexuality” who were told, “Well, there isn’t anything wrong with you. You don’t need to be treated. What you need to do is find other people who have similar sexuality as you.”

They’re also important because we need to hear the diversity. We also found that many lesbian survivors were very active in contesting the pathologizing of male homosexuality.

 

Dhar: In 2009, you wrote a review about minimal medication approaches to schizophrenia. What did you find, and why did you think it was important to work on this?

Spandler: I mentioned earlier that there’s a lot of disagreement amongst psychiatric survivors, service users, people with psychosocial disabilities, but there is a lot of agreement on the need for alternatives to inpatient treatment, particularly for people experiencing psychosis.

That’s something I was always passionate about — the need for genuine asylum for people to go to. I wrote this other paper exploring people’s right to go through psychosis with minimal medication and maximum support. We should be able to provide these kinds of spaces.

Loren Mosher came to the UK and inspired us to set up a Soteria network in the UK. We’re still struggling to set up a Soteria house. We enlisted somebody who was really skilled at doing a systematic review to revisit some of the data around Soteria. I am very critical of looking at evidence-based stuff, but it felt important because Soteria was originally set up as a research project.

One of the things we found was that it was at least as effective as a mainstream treatment, which I think is an important nuance because if people end up on long-term antipsychotics, they can have a long-term impact.

We produced an early booklet and went around commissioners to see whether anyone was interested. We thought if we use that systematic review, it might help to set up a Soteria. But my experience of the therapeutic community movement was that using evidence like that wasn’t effective; if the broader context doesn’t support these types of things, then it doesn’t matter what evidence you throw out; it’s not going to happen.

We put it in a big, high-hitting journal, Schizophrenia Bulletin. We wanted to put it somewhere where people with influence might read it. I doubt it had much impact, but, as you say, you never know, sometimes it’s just about one individual reading something.

 

 

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





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