Learning from lived experience of mental distress and ill-health: stories from practice and education in mental health occupational therapy Susan Walsh

Why focus on lived experiences of mental distress? My story Curiosity about what how we, “cross the tracks” (Fine 1994), between service user, tutor and student positions in shared learning situations. UK mental health policy supports the inclusion of lived experience in professional education (Tew 2004)

What did I do? Group of 3 service users, 3 tutors and 3 students from occupational therapy programme. 2 focus groups and individual interviews Narrative approach to analysis (Gubrium and Holstein 2003)

Narratives CONCERN HOPE RESISTANCE

Narratives of concern - our stories “ This counsellor came to me and said, ‘You will smile again. Everything will be fine – you will meet somebody again, you are only young’, and I was so angry I was just so furious ‘cos all I wanted her to say was that she understood that I wanted to die – my husband had died, my soul-mate had died and I wanted to be dead as well…” (Service user)

Narratives of concern – our stories Mental distress is personal and unique “Mental distress not always like it says in text books” (Student) Mental distress is unpredictable and unexpected. “ “…because it almost felt so sudden, when it came about … and it made me think differently about… mental health,in the way that it can happen to anybody…” (Student)

Narratives of concern – our stories Mental distress is part of life “… we are always vulnerable…... it never stops evolving actually… and mental health, good or bad… will always be part of our lives…” (Service user) Focus on emotion “…it’s really important that whatever field we are on placement in or practising in, that we are open to hearing non-judgmentally and not in a way that we feel shocked and have to close the person down.” (Tutor)

Narratives of Concern - negotiating stories in education Professional concerns? “ …and they are used to assessing people and they often have checklists and questionnaires, and in this session we ask them to listen with their whole being to people telling their stories. “ (Tutor) Students not “ready” for hearing about distress (student, service user, tutor)

Narratives of Concern - negotiating stories in education ‘Risky’ for students and tutors “ I think it is really thin line...as to whether that sort of disclosure from a tutor is it gonna upset people too much. Is it gonna horrify somebody? – well it’s like taking your clothes off, I suppose, perhaps…” ( Tutor) “Students pay to be taught not to talk” (Student)

Narratives of Hope – our stories Realising hopeful futures " It opened my eyes to a whole new world. A world where I wasn’t asked to fill in questionnaires, telling people how depressed I were, it was a world of normality…“ (Service user) Living with mental distress “…that we can seem to be complete wrecks, states… but the next day or a few weeks or a few years later, we can be competent, resourceful, confident and we can fluctuate, so it’s not fixed, ever hopeful and fluctuating situation…“ (Tutor) Realising personal strengths and drive "it made me realise I have a lot going for me, and when I came out of that period, I wanted to make the most of my life so it gave me a lot of drive...” (Student)

Narratives of Hope – negotiating stories in education Understanding hope in others. “…I was thinking like the general public…you know… having loads of prejudices….because my idea was that once you have like serious mental health problems, well they stay with you and you are really truly seriously unwell for the rest of your life…” (Student)

Narrative of Hope - negotiating stories in education Whose hopes? “ we had a lot of Ph Ds in that room…. and it was like trying to prove you were alright, by getting a Ph D in order to prove we have normal intelligence! Gross overcompensating and revealing internalised stigma.” (Tutor)

Narratives of Resistance – our stories Finding a voice through story telling “I felt on top of the world, felt empowered, it was...you now… like no other drug I had ever taken really it was something I couldn’t really measure – … the mental health difficulties I had had which were really negative, I felt like I had turned a corner and I had turned this awful two year episode of my life around,(Service user) Having a collective identity "if you have been hospitalised and been sectioned… it’s such a big experience, that there is a sort of understanding…I suppose, the same kind of camaraderie…” (Tutor)

Narratives of Resistance –negotiating stories in education Staying quiet “… I want to ask different questions than the rest of the class. I’m mostly gobby so I mostly sit on my hands and keep my mouth shut and just listen. One day I am going to get with these guys and ask the questions I want to ask … yeah using my illness…or past illness as a point of reference to the teaching that I am getting.” (Student) Playing ‘unmad’ (Tutor)

Concluding remarks- negotiating at the margins “ …it is about a willingness to relinquish power without necessarily having experience” (Service user) “What if I was in that situation ?” What if my entire world was turned completely upside down?” (Student) “…it is where all the exciting stuff happens….” (Tutor)

Thank you for listening to my story. Any questions?