Jeanette Winterson’s advice to anyone is ‘get born’. I am slightly more dubious about human existence, but could reluctantly compromise on: ‘get born; check your privilege; get therapy; fight for social justice; get on the Wellcome Trust’s mailing list’. Seriously. I would advise anyone and everyone interested in science, humanities, mental health, medical history or the human condition to get themselves on there – they do remarkable and pretty much unique work, not just in terms of exhibitions and scholarly funding but also in terms of symposia and research days and all manner of what on topics connecting scientific and medical research with other aspects of the human experience. They’re great. And yesterday’s symposium on mental health recovery was unquestionably a case in point.
Ostensibly the ‘soft launch’ of http://mentalhealthrecovery.omeka.net, the whole thing was the brainchild of PHD student and former archivist Anna Sexton, who’s looking at participatory archives and the ideologies of record-keeping (more detail here). Essentially, the archive shows the stories of four people with lived experience of mental health difficulties, and their critical dialogues with the concept of recovery. The contributors – therapist and academic Peter Bullimore, ’professionally mad’ multimedia artist Dolly Sen, writer Andrew Voyce and mountaineer and photographer Stuart Baker-Brown. Each structured and designed their own sections of the website. The day consisted of short lectures from each about their experiences and their take on the complexity of ‘recovery’ as a concept in relation to mental health, current medical treatment, and non-pathologising ways to conceptualise the lived experience of mental health issues. Peter Bullimore, therapist and educator, is probably going to get the lion’s share of this writeup, partly because he was the most technical, partly because he’s much more involved in the practical therapeutic stuff that really interests me, and also because while Dolly, for example, was funny and charming, anyone would get much more out of reading her story in her own words than they would out of me précis-ing her précis. [That sounds a bit dirty. It really shouldn’t.]
Anna Sexton’s introduction talked about how the concept of ‘recovery’ tied into a medical worldview often rejected by those with lived experience of mental health issues. She spoke of the problematic scarcity of the voices of those with such experience in written records, particularly institutional records for asylums and hospitals, and the consequently hidden, subsumed, fragmented nature of their stories. This wasn’t exactly part of the talk, but the few we can glimpse include the ‘Pam Maudsley diaries’, and the letters of Nora Quin to her sister from the York City Mental Hospital 1936-50. Believe me, these are depressing; the last basically consist of Nora begging her sister to come and fetch her. Every week. For 16 years.
Anyway, Anna’s introduction was succeeded by Peter Bullimore’s talk on ‘The Impact of Trauma’, delivered at approximately 500 miles an hour, which was great for breadth of content, if less so for coherence of notes. To be fair, he got me onside pretty early on by going ‘so, I’ve heard voices since being abused at the age of 7, those are my experiences and I own them’, and appearing to actually do so. He also entirely denied the validity of his (or anyone’s) schizophrenia diagnosis, which I’m not really in a position to contest but can understand some might wish to – certainly I can see a diagnosis of some mental health conditions (bipolar, say, or OCD) would have some validity for those affected both in terms of understanding and accessing appropriate treatment. I just don’t know enough about schizophrenia to know if that would be the case (equally certainly, from his anecdata and my own unfortunate encounters with mental health services, I can see how it might cause more problems than it solves). He works across the disciplines that come under the banner of psychiatry, specialising in those who have been told they can’t recover. ‘A person’s lights never go out’ echoed through the talk; Bullimore stresses the importance of ‘reaching beyond diagnosis’ to the person, positing recovery as an entirely individual, experiential thing.
Trauma, he argues, is prevalent in those with lived experience of mental health difficulties. In his experience, sexual, physical or emotional abuse and neglect are often found in the narratives of those with mental health issues (and here I think he focuses specifically on voice hearers, but it wasn’t clear). The less severe the trauma, the less pronounced its effect in psychosis – but it’s non-diclosure of trauma, not trauma itself, which can be a trigger. Human beings assimilate and deal with traumatic incidents by revisiting them, narrativising them, sharing them, so they lose their power [this is me paraphrasing, I might be wrong]. ‘It’s not what happens, it’s what you do with it’ – if the brain can’t talk to anyone, it’ll talk to itself.
When people arrive in mental health treatment, to Peter the most important thing to ask is ‘how did you get here?’ To seek context and story rather than simply categorise and drug, or worse still write people off as unrecoverable. (It’s noticeable that all 4 of the MHRA contributors had been told this at one time or another.) But if you ask, you have to act if the person wishes you to – the next question is often ‘do you want me to do anything with this?’
Why do people – practitioners – not ask clients for their stories? Many reasons – narrative doesn’t fit the medical model; practitioners may consider the client too disturbed (avoidance from practitioner) or too distressed (but a can of worms will always be a can of worms, open or otherwise); they may assume the client doesn’t want to be asked (rationalisation) or they may be afraid of ‘false memory syndrome’ (herewith a rant I didn’t write down, alas).
Why does trauma, particularly childhood trauma, manifest as voice hearing and other adult mental health difficulties? Trauma is a cognitive fog. If the subject dares not look at an event, they cannot see it. If they cannot see it, they cannot think about it from their growing perspective. The practitioner will often know a client’s thought process – or, in fact, emotional development – has halted at a particular point, but the client must be willing to go there (and thus feel able to trust the practitioner to create a place of safety from which to explore) to be able to resolve issues. Is the client’s response adult or child’s fear?
As long as we repress traumatic memories, we remain in the trauma. Frozen terror halts emotional development, so memories and attendant trauma can be triggered but not worked through. Talking about it people regress to age where trauma happened – ‘emotionally, how old do you feel?’ Often, people have multiple traumas, it’s not just one experience or incident, so if there are (say) ten boxes of hidden trauma, start with the easiest. People gain confidence from successfully overcoming the smaller ones to tackle the big ones.
‘All addictions are about avoidance’. The person they avoid is the person they most fear. Who are they angry with? Not necessarily the abuser, but the parents for missing it, or not listening or caring.
Truth – what is really there? Adult or child?
Trust is the antidote to trauma, but must be earned and deserved.
Consent is crucial, it empowers – you can’t coerce somebody into dealing.
BE AWARE OF YOUR OWN FEARS AND TRAUMAS. Otherwise you are a liability and undeserving of trust. Always focus on the bits of the story they don’t want to see – and ask them to explain in their own words.
TRAUMA TRIAD. The adult must eventually be able to say to the visualised or remembered abuser that:
– What you did was wrong
– I am angry at you for doing it
– I am going to stop you from doing it
This helps unlock the frozen terror. You can use role play and visualisation – letters to and from inner child, significant figures, etc. People’s first question to their abusers is usually ‘why?’
You need to know that the person’s trauma is over and convey that without parenting or retraumatising. DO NOT PARENT – it keeps kids alive and adults insane. You need to support, not pick up.
Case study: Anna, raped twice at age 14. She told her mother both times, and both times was ignored and told not to tell. This made it her fault. As an adult, she hears three voices: her rapist, a female voice telling her off, and her own internal voice. Why did her mother let her down? They still live together. She asks Peter ‘Will you keep me safe?’ (to confront visualised rapist). Put inner 14-year-old in safe place, invite adult Anna to confront rapist and explore the trauma triad. She recovered with gratifying speed, began resisting mother and developing adult autonomy.
So, ask ‘how did you get here?’ (what has happened?)
If that is unanswered:
Who are you?
If that unanswered:
What’s your biggest fear?
– when did it start? What was happening then? (remember avoidance).
Case study: x, taken into custody, claimed to have shouting match with the Queen and have found the Holy Grail and left his coat over it. Schizophrenia diagnosis. Turns out he’s recently lost 5 close family members and his wife left him. Bereavement also loss of sense of identity, control, structure. Creating fantasy in order to cope, creating livable world. Three weeks of intense bereavement counselling and symptoms abated.
DON’T WORK WITH DIAGNOSES, WORK WITH HUMAN BEINGS.
Work with people on their own terms. Often people are unable to speak about being unable to speak. Mental health symptoms are often imaginative rescue for sense of control.
Fear is transposed outward.
If people can’t respond in the terms you’re offering, change method – art? Role play? Writing?
Everybody wants to be asked. Everybody wants to be related to as themselves. Everyone Is people.
So, yes. That, in case it wasn’t obvious, is mostly a slightly more coherent transcript of my notes. Stuart Baker-Brown’s and Andrew Voyce’s will be shorter; I’m telling you NOW to go look at Dolly Sen’s stuff [link] because a lot of it’s art/image dependent, and she’s hilarious. (Her card runs: NONE OF YOUR BUSINESS CARD. CONTACT: NONE WITH REALITY. She set up Bonkersfest to subvert understanding of mental health issues with humour. She has the lyrics to Joy Division’s She Lost Control tattooed on her right forearm. We swapped doctor horror stories. She’s ace.)
Stuart Baker-Brown has a diagnosis of schizophrenia; his symptoms aren’t a problem (‘psychosis is beautiful’) but how he’s been treated, particularly by the medical establishment, really was. He was told to give up any hope of working again and put on drugs with horrific side effects. Had grown up being told feelings, especially depression, are a weakness, and so never expressed any. He wanted hope and positivity from services, not denial of his ability to function. For him, recovery and indeed his condition have been about working out meanings for himself.
Dolly Sen – just google her.
Andrew Voyce, an asylum patient for 20 years before Mrs Thatcher closed the asylums, considered himself to have ‘written himself better’. A great believer in the power of narrative for communication and understanding, he has rebuilt relationships with his family on the basis of his writing, and contributed to several books about the lived experiences of mental health issues (eg. Grant, ed, Our Encounters with Madness). His definition of recovery coheres with that of Gordon McManus – effective therapy, a meaningful life, a new identity (I myself would perhaps take issue with this last bit). He’s unsure about the concept of curing a biological disease – much more concerned with the social dimension of mental illness.
Jerome Carson, professor of psychology at the University of Bolton, bears a startling resemblance to one of the nurses at Addenbrookes, where I was an ED psychiatric inpatient in 2004 (I think), and I slightly regret not taking the opportunity to tackle him about that. (Given that his profile simply states that he worked in ‘the health service’ between getting his degree in the early 80s and his PhD in the mid-2000s, it’s not beyond the bounds of possibility.) He spoke about the ownership of stories about mental health, and how the concept of ‘recovery’ privileges certain narratives, and the conflict between voices of ‘professional expertise’ and lived experience. There’s been increased attention over recent years to the perspectives of those with lived experience – in Psychiatric Services journal, for example, there were 10 articles by people with lived experience for the first 50 years, 34 between 1994-2000, and 46+ since 2000.
Why is this important?
1) Helps MH professionals learn about difficulties and experiences – enhances understanding.
2) Gives sufferers and families sense of not being alone
3) Addresses continual need for experiences to be shared amongst sufferers, professionals and carers.
4) We learn by sharing stories.
Glenn Roberts: ‘At its most arid, modern medicine lacks a metric for existential qualities such as inner hurt, despair, hope, grief and moral pain, which frequently accompany and often constitute the illnesses from which people suffer.’ Greenhalgh etc, quoted Roberts, 2000.
Patricia Deegan, Recovery as a Journey of the Heart, 1996: ‘The goal of recovery is to become the unique awesome never-to-be-repeated human being that we are called to be.’
CHIME definition of recovery:
Hope and optimism about the future
Meaning in life
Julian Pooley, not a speaker but an audience member, works at the Surrey Archive in Woking, which has kept mental health record s since 1700. His archive received archives from the aSylums when they shut. He collects oral histories of lived experiences on mental health – has been on R4’s All in the Mind – but expressed concern over need to have a MH professional present when essentially poking about in murky bits of people’s pasts.
(At this point I scribbled ‘look into archivist training/jobs’ in the margin. Nuff said.)
So yes. Recovery is a fraught concept, as is the ownership of stories – hopefully more will be done to redress the imbalance of practitioner and experiential accounts of mental health issues.