I consider myself a friend and ally of psychiatric survivors and someone who has lived with, and tried to support, close family members and friends through psychiatric crises. I have been a mental health activist, a development worker in a service user-led project, and a researcher and teacher. These are some reflections on my experience of learning from psychiatric survivors over the last 30 years.
Binary distinctions between ‘service users’ and ‘professionals’ or the ‘mad’ and the ‘sane’ are often unhelpful as we all experience distress at some point in our lives. Having said that, it’s fair to say there is a kind of critical threshold that some people reach which leads them to respond markedly differently to the way most people generally handle situations in their lives. While some of us voluntarily access mental health support at certain times, this is qualitatively different from being diagnosed, forcibly treated, detained, or requiring ongoing support from mental health services. These experiences can have a profound effect on one’s identity, sense of self and position in society. In addition, it is one thing to have had a psychiatric history, it is another to be ‘out’ about that history.
Recognising these differences is important if we are to forge much-needed alliances with users and survivors. Yet, there are also complex dynamics of power and oppression which further upsets any simple distinctions between ‘oppressed’ psychiatric survivors and ‘oppressive’ professionals or carers. For example, in relation to workers or carers, survivors may be socially advantaged in other ways, such as in relation to their age, gender or social class. This is not to get into a ‘hierarchies of oppression’ debate, but to recognise the nuances and complexities of our social situations (what is now called ‘intersectionality’). Whilst mental distress, and psychiatric intervention, often has a negative impact on psychiatric survivors, it can also have a profound effect on people around them too.
My own distress, and especially my ongoing struggle with anxiety, was formed in the context of living with the fear, sadness and shame of mental health difficulties in my family. Like many activists, I objected to campaign slogans such as “Just because you’re not mentally ill, doesn’t mean you can’t suffer from mental illness” (from the SANE organisation in the UK). Slogans like this seem to pathologise and demonise the ‘mentally ill’. Yet living with people who are experiencing severe mental health difficulties can be difficult, scary and painful, especially as a child. Psychiatry might provide temporary relief and respite for families, as well as for the person designated ‘mentally ill’, but it can create other problems in the long term. Unfortunately, there is little support available for families or friends who want to adopt alternative frameworks of understanding these difficulties. There is probably even less alternative support for them than for users and survivors. And that’s saying something. In these circumstances, perhaps it is not surprising that people often turn to psychiatry for assistance.
I have often wondered: if there were genuine alternatives, not only might my family and friends not have suffered for so long, but perhaps my own distress might have been alleviated too. In my view, we need mental health services, perhaps even psychiatry, but they need to be democratised, informed and transformed by survivor knowledge and expertise. This is beginning to happen, slowly, if only on a piecemeal basis. We have a long way to go.
My experience of working alongside psychiatric survivors has been profoundly unsettling and challenging, but ultimately rewarding. Survivors have been some of my most important critical and respected allies. I believe if we are open enough, we can learn a lot from survivors: about ourselves, our common humanity, and our social world. We can learn about coping with oppression and other difficult experiences from people who have learned to deal with extreme states and mental suffering. For example, self-harmers can teach us to reflect on our own coping strategies; and voice hearers can prompt us to think about how we deal with our internalised critics. But whilst we have learned a lot from hearing voices and self-harm movements, the transformation in our understanding of madness and distress is far from over. It is very much an unfinished project.
I increasingly think we can only reach greater understanding by working through our own experiences first, and then, if we can, alongside survivors. That will help us become more open to survivor knowledge. For example, we may need to work through our own need for control and understanding. It’s helpful to consider our own reactions to distress or madness — in ourselves and others. How do we respond when people break social and emotional conventions that we take for granted and that help us feel safe? It can be disturbing, frightening and deeply unsettling to not be able to understand or control behaviour which feels strange, unintelligible and dangerous to us.
Anxiety and fear are painful emotions, so we often try to find ways to defend ourselves from feeling them. Medicalising, psychiatrising and diagnosing are socially sanctioned ‘defences’ against these feelings, and they place a social and moral distance between ‘us’ and those we designate ‘mentally ill’. This can be an understandable way of coping with these situations, especially as it appears to relieve us of any responsibility and blame. However, it also cuts off alternative ways of understanding people’s distress or madness. Staying open-minded is one of the hardest, but most important, things we can do.
Medicalization isn’t the only way we can defend ourselves against our fears and anxieties. Sometimes, as mental health activists, we can hide behind radical sounding rhetoric, theories and grandstanding statements — we are ‘pro rights’, ‘anti stigma’, ‘against the cuts’ or whatever. Whilst these aren’t necessarily wrong, they are sometimes expressed in ways which over-simplify the complexities and difficulties at stake. For example, I don’t think everything can be reduced to mental health stigma, discrimination or sanism, and I don’t think more funding and services would necessarily solve these problems either (although it would certainly help).
I’ve mobilised these defences myself and hidden behind radical rhetoric, especially when I’ve felt unsure or uncertain. In recent years, I’ve noticed an increasing number of ‘critical’ mental health conferences, texts and events. On the one hand, this is very welcome. But I’ve also witnessed a corresponding decrease in alternative support services available to people. I’m not saying there is a simple causal relationship here, but perhaps it’s easier to retreat into sloganeering or theory than engage in the messiness and difficulties of working with survivors to create genuine alternatives.
After all, being survivor led isn’t always easy or straightforward. We don’t necessarily have shared ways of understanding and ‘being in the world’. If we experience the world differently, especially during a mental health crisis, it is likely we will respond to it differently too. However, because we often expect people to share our way of being in the world, and the things we’ve found helpful or harmful in our lives, we sometimes unwittingly impose this on others. This is the problem with universalising from our own personal experiences. Rather than pretending we don’t see the world through our own experiences — we all do this — perhaps it is better to be open and honest about this.
Over the years I’ve tried to make sense of my own reactions and frustrations, and not assume I know best, even if I think I have the ‘right’, ‘radical’ or ‘survivor focused’ response. When trying to support people I’ve tended to make all sorts of assumptions about what being ‘radical’ or ‘survivor-informed’ is. It is about being informed by the collective wisdom of psychiatric survivors; an individual or a particular group of survivors? Of course, survivors can radically disagree with each other, and sometimes even with themselves (as we all do at times).
For example, I recently faced a situation of trying to advocate for someone’s advance statement that they had carefully drawn up themselves, only to reject it when they were in crisis. I was accused of interfering and controlling their lives, despite the fact that they had explicitly requested this intervention, if this situation arose. Which is the genuine ‘survivor perspective?’ The one written down or the one in front of me now? Abiding by their advance statement would have resulted in coercion, which most (but not all) survivors oppose. We are both still learning from this experience. Many years ago, when I worked for a user-led organisation, I booked a well-respected figure from the survivor movement to talk about survivor-run crisis services. The members were distinctly unimpressed, as they wanted to develop a more conventional drop-in facility. The irony of this situation is not lost on me now, as day services have been closed and run down.
I’ve also witnessed families and mental health professionals be criticised by users and survivors, as well as other professionals, and even disciplined by authorities, for refusing to prescribe medication or use psychiatric diagnosis or the powers of the Mental Health Act.
In addition, users and survivors sometimes demand psychiatric diagnosis, medication and treatment. Some people find these things helpful in understanding themselves and alleviating their distress, and diagnoses can be essential in accessing specialist support services and disability supports. I don’t think it’s sufficient to suggest this is some kind of ‘false consciousness’. We need to be careful not to replace one psychiatric orthodoxy with an ‘alternative’ which we claim is radical or ‘survivor led’. After all, one person’s orthodoxy might be another person’s lifeline.
I’m not giving these examples as a reason to reject radical survivor informed practice. Far from it. But I think it’s not as simple and straightforward as we sometimes suggest. If we teach people it is, and brush these difficulties under the carpet, we’re setting ourselves up to fail. In order to continue to learn from survivors I think we need to find more ways of talking about these conflicts and tensions, without resort to pathologising and blaming. This is not just an issue for allies, but for all of us, survivors included.
If we feel silenced — either by dominant medical narratives, or by alternative ‘radical’ or even ‘survivor led’ ones — perhaps we are more likely to resort to defensive practices. To paraphrase Kathryn Church, the process of survivor engagement is not complete whilst silence exists around the places where it has rubbed us raw.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.