My name is Flick Grey. I’m a mad wandering academic, living between London and Melbourne, Australia. One way of framing what I have to say is as my search for a home. Another framing is as an auto-ethnographic study of my own madness. Yet another is me sharing what’s uppermost in my mind, what’s most alive in me in this moment, trusting that this will connect with at least some others and maybe we can think a bit together.
This is not the academic paper I had intended to write – I am completely mad right now, or rather, I am ‘borderline’ mad. But if I can’t be (‘borderline’) mad at a Mad Studies conference, I don’t want to be here! I understand and value my madness as a deeply generative space.
This particular bout of madness has a context. Last week, I was in Kaunas, Lithuania, for the 21st International Meeting on the Treatment of Psychosis. I had heard this gathering described as “The Home of Open Dialogue” and “a democratic space with no fixed program”.
I was very excited to be going. I had fallen in love with Open Dialogue in 2013 when, in an auditorium filled with both radical and establishment (sanestream) colleagues, I watched Daniel Mackler’s documentary Open Dialogue: an Alternative Finnish Approach to Healing.
For those unfamiliar with the approach, Open Dialogue offers a systemic response to people in emotional crisis. It originated in Finland, beginning in the 1980s, and draws on many diverse philosophical and theoretical strands, including social constructionism, Batesonian cybernetics, systemic family therapy, reflective teams and needs-adapted treatment.
In practice, it involves bringing together people in crisis with their social networks, to discuss their various worries and understandings, and to explore ways forward. This process of speaking openly with each other was found to be helpful, and it dramatically reduced the use of neuroleptic medications, hospitalisation and diagnoses.
Open Dialogue is currently being trialled by NHS England, and has been taken up enthusiastically by many people in the international Mad movement. For example, it is included in Peter Lehmann’s book Alternatives Beyond Psychiatry (2007), Will Hall (the curator of Madness Radio) offers workshops on the approach, and it features on Mad in America.
While much of the research into the efficacy of Open Dialogue has focused on psychosis, the approach is offered to everyone approaching mental health services with concerns. Whereas access to the Australian mental health system (the system I am most familiar with) is highly regulated by diagnosis and ‘severity’ criteria – my own madness has rarely been deemed worthy of response (and even less often a nonshaming response) – Open Dialogue is organised around responding immediately to people, regardless of the concerns they are presenting (e.g. drug use, loneliness, difficulties at school). Moreover, madness is understood to be contextual – between people – rather than a ‘disorder’ within an individual.
For various reasons, while I was in Kaunas I fell out of (naïve) love for Open Dialogue. As with any human network, there are petty and unspoken rivalries, (disavowed) power hierarchies, ignorance of the critical work of the international Mad movement (and ignorance and disavowal of this ignorance), and an irritating, selfcongratulatory, un-self-reflexive chorus of “WE are the ones who GET IT.”
I also realised that, as a network of professionals, Open Dialogue privileges psychosis. I was disappointed by the mismatches between rhetoric and practice. While I was there, I was invited to present at the International Society for Psychological and Social Approaches to Psychosis (ISPS) conference, because Eleanor Longden had pulled out. But my experiences are not psychosis. I was also repeatedly asked if I was coming to the Hearing Voices Congress in Paris.
I tried to articulate something of the complexity of my relationship with Hearing Voices, but this Just Borderline Mad Flick Grey page 8 asylum spring 2017 was dismissed with “Just come!” I was confronted with just how much psychosis is centred in the ‘alternatives’ spaces in which I move, and simultaneously this felt painful and stimulated new thinking.
The Hearing Voices Network seems to me one of the most generative spaces in the mental health world today. Specifically, it is a space in which voice-hearers are recognised as subjects and producers of vital knowledge, rather than cast within an epistemic framework imposed by ‘enlightened’ professionals. However, the Hearing Voices Network is politically problematic for me because it constructs a world of centres and margins – and my own ‘borderline’ madness is positioned as peripheral.
At the centre are the experiences of those who hear auditory voices and have had ‘psychosis’ experiences (and typically have an identifiable trauma-history and years of involuntary treatment and neuroleptic medications). People whose voices are a spiritual phenomenon, who dissociate or who have unusual beliefs are also carving out spaces for themselves within the Hearing Voices approach.
I’m not sure how to locate my own madness experiences in relation to this world, but I’m tired of feeling or being marginal (or ‘borderline’!). Within the psychiatric system, I was informally labelled as having borderline personality disorder, but today my private (trauma-informed) psychotherapist describes me as having “complex posttraumatic stress disorder” (a diagnosis not recognised by DSM 5). I don’t find either description adequate, although the latter is much less shaming! I understand my own experiences not in terms of a disorder of an individual, but in terms of relational embodiment.
Let me try to explain. My mother describes the day I was born as “the best and the worst day of her life”. She finally had a longed-for daughter, but she experienced me as “rejecting her the moment I was born”. Consumed by her own unmet needs, she was unable to attune to mine. I was also sexually abused by my father, for many years and from a very early age. It is excruciatingly painful for an infant to have no safe caregiver with whom to attach. I was left alone to master the all-important task of learning to respond to my own emotional world, a task that infants ideally learn in an attuned attachment relationship with a caregiver.
And so I invented creative ways to self-soothe: I would rock myself backwards and forwards, hide in cupboards or in other dark, quiet spaces when I felt overstimulated, do dangerous things to get an adrenaline rush, or try desperately to ‘earn connection’ (e.g. by precocious achievements, by ‘being a good girl’, etc). At an early age I also discovered that causing pain to my body releases endogenous feel-good chemicals. When life was unbearably painful, I would soothe myself by fantasising about dying – the ultimate act of control for those who feel powerless.
As I grew older, these activities became more worrying to other people, and at age twenty-six I came to the attention of the mental health services. The explanations of my experiences proffered by the mental health professionals made little sense to me, and they were highly shaming, blaming me for any relational difficulties. Ever since, I have been searching for a language that would do justice to my experiences.
One of the places I found refuge was in the work of the Australian cartoonist and ‘high profile nutcase’, Merinda Epstein, an elder in the Australian Mad movement. I credit Merinda with literally saving my life, since she offered non-shaming descriptions of experiences like mine. Judith Herman – a Harvard psychiatrist no less – has proposed that BPD be reclassified as complex post-traumatic stress disorder (C-PTSD), and says the ‘borderline’ label is “little more than a sophisticated insult”.
However, I disagree with her proposal for three reasons. Firstly, I don’t see my experiences as ‘disordered’ but as creative adaptations to my relational context. Secondly, Merinda and I have written together about hierarchies within the mental health system, including hierarchies of trauma. For example, most people would hear my history and locate ‘my trauma’ as the sexual abuse. But while this was indeed traumatic, the mis-attuned relationship with my mother was far more painful.
In part this is because there is no collective language or cultural (or sub-cultural) legitimation for those kinds of experiences, and so I have tended to blame myself (as children so often do when their experiences of care are painful). Some people are unable to identify any culturally-recognised traumas in their histories (what I call ‘capital-T Traumas’, such as sexual abuse), and so they don’t have the option of the exculpating C-PTSD diagnosis, and I believe it’s important to strive towards what McRuer (a crip theorist) describes as “a rigorous conjunctural analysis that leaves no form of identity behind”.
Thirdly, C-PTSD has primarily been theorised by trauma-specialists, not by Mad people, and so their words don’t feel like my words: it still locates mental health professionals as ‘the real experts’ on my most intimate experiences. Even the word ‘trauma’ has a place in my culture that is overly pre-determined, rather than offering space for individual meaning-making (as is offered by the Hearing Voices Network).
I ask people “How do YOU understand your experiences?” – especially when they have no obvious, culturally-recognised trauma: too many people with a BPD label describe feeling ashamed for not having “enough trauma to be this fucked up”. But I believe that when we listen carefully to relational context and meaning-making our responses always make sense.
Just as I try not to blame myself for these relational patterns, I try not to blame my mother, either. I recognise patterns of intergenerational trauma in both of my parents’ behaviour towards me. I understand the painful experiences between me and my mother in terms of relational embodiment, the way in which bodies respond to each other.
I identify with the concept of ‘sensitivity’ (which I came across through the work of Elisabeth Svanholmer and Rufus May): when I was an infant and my mother asylum spring 2017 page 9 ‘loomed over me’ I felt overstimulated and tried to move away to lessen the stimulation – which she experienced as rejection. Another, less sensitive child may not have responded the same way. My mother then disavowed her own experiences and blamed me, describing me as “an impossible child”.
Jaakko Seikkula is the patriarch of the Open Dialogue world, and in Kaunas he ran a workshop on embodiment in Open Dialogue. It was there that I came to understand that BPD could be described in terms of a relational embodiment pattern, in which a caregiver – a parent, partner, friend or mental health professional – is in contact with someone who is relationally sensitive and struggling with big emotions and complex feelings about attachment.
The caregiver has an embodied experience of rejection and feels something – perhaps hurt, anger, confusion – but then disavows this experience and instead rejects the person, blaming them for their ‘inappropriateness’, ‘anger’, ‘manipulation’, ‘attention-seeking’, etc., etc. Indeed, Gunderson (perhaps the biggest name in BPD after Marsha Linehan), has described BPD as “collective counter-transference.”
Another way in which I understand my own experiences is in terms of ‘parts’. The Hearing Voices Network does not quite feel like home, because if I am asked the question “Are you a Voice-Hearer?” I believe it would be dishonest to give an unqualified affirmative – and I might be in danger of co-opting the experience of those who do hear voices. But the question itself is problematic for me.
Drawing on the work of Rufus May, I suggest that the experience of hearing voices is not a binary yes/no since, in a sense, all human beings hear voices. These voices may be the ambivalent parts of us (one part says “have another chocolate” while another says “remember we are trying to lose weight!”), or an introjected (internalised) voice of a judgemental parent (like my mother’s voice telling me I am “impossible!”), or an ancestor offering guidance from beyond, the soothing voice of someone who has comforted us, or a child part that wants to get out of this lecture theatre and go play in the sunshine.
During a session of Maastricht Interview training in Melbourne (with Marius Romme, Sandra Esher, Ron Coleman and Indigo Daya), a dear colleague of mine, Louisa Dent-Pierce, profiled my ‘inner voices’. Together we identified them as my inner children and they have come to be an integral part of my healing: when I fail to listen to and honour these child parts, I go crazy. But my crazy is not the kind of crazy that is culturally legitimised as ‘really mad’ – psychosis. I just seem angry or over-sensitive, and am much more likely to experience social rejection. In fact, I might run away, curl up in a ball, sob and rock myself for an hour or so, as I did yesterday. But I seem to be kind of functionally dysfunctional.
At Recovery Camp in Kaunas, in the summer, I tried to offer some of this thinking, first to Marius Romme (the patriarch of the Hearing Voices Network) and then to Jaakko Seikkula. But like many mental health professionals (or people in positions of relative privilege), both seemed unable to position themselves in a relationship of mutual learning with mad folk.
At Kaunas, I tried to explain to a group of people that I am troubled by the question “Are you a voice-hearer?” because the underlying assumption is that I could position myself unproblematically within this binary, rather than problematizing the binary. This led to me being described by an Open Dialogue colleague as “fragile” and “sensitive”. Indeed, I do identify as ‘sensitive’, but in the sense that canaries are sensitive to toxic gases: canaries used to be taken down coal mines, and their death would signal that something wasn’t right – their sensitivity offered invaluable information about the working environment.
My colleague didn’t hear my words as an intellectual critique. Instead she described me as “being easily hurt”. How quickly our mental health professional ‘colleagues’ adopt a clinical gaze when faced with emotional distress or challenging ideas from mad folk! Our position as producers of knowledge is so often discounted when they identify an opportunity to ‘help’ us – especially when they position themselves as one of the ‘enlightened’ professionals!
In this paper, I’ve tried to engage with what Helen Spandler called “the project of reclaiming and reframing our experiences of madness”. Right now, I’m exquisitely sensitive, in a way that is both highly distressing to me, and no doubt to anyone emotionally connected with me, but I hold this space as intellectually productive.
Finally, I wonder how one might stigmaphilically reclaim these experiences, akin to Ron Coleman’s tattoo: Psychotic and Proud. Perhaps I could say Self-Destructive and Proud or Exquisitely Sensitive with Really Big Feelings and Proud; or perhaps: Complex Relational Embodiment Patterns of Sensitivity and Rejection, and Proud. Alternatively, I could take up cultural references like the ‘Bunny Boiler’ (as in the movie Fatal Attraction, which has been used in educational environments as a way of understanding BPD), or: Passes as Normal but Just a Bit Angry and Over-Sensitive, as in the movie Girl Interrupted… I am curious about how others navigate these kinds of questions!