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Similaire à Reflections on Building Unity and Influence Within the Consumer-Survivor-Ex-Patient Movement
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Reflections on Building Unity and Influence Within the Consumer-Survivor-Ex-Patient Movement
- 1. Reflections on the consumer -survivor -ex-patient movement VMIAC Our People, Our Voice Conference 2017 @IndigoDaya
- 3. I may say things today that feel challenging. We may have very different journeys, beliefs & priorities. But let us sit together anyway, and share our reflections.
- 4. Some experiences… • What drives me • Consumer influence • Working inside the system Some reflections… • On the inside or the outside? • The challenges of diversity & unity Where to for our movement?
- 5. What drives YOU to be part of this movement? What drives me…
- 6. I went mad because of horrific childhood trauma. My healing came from doing the opposite of what the doctors tried to force on me. The system I turned to for help made everything worse.
- 7. Hard facts that break my heart and remind me that … • If I know about profound injustice • And I can do something, anything, about that injustice • Then I must try…
- 8. Trauma is the most prevalent experience for us (and the least understood or addressed) Of people who use public clinical mental health services: Sexual or physical abuse as children Sexual or physical assault as adults Goodman, L.A., Salyers, M.P., Mueser, K.T., Rosenberg, S.D., Swartz, M., Essock, S.M., Osher, F.C., Butterfield, M.I., and Swanson, J. (2001). Recent victimization in women and men with severe mental illness: prevalence and correlates. Journal of traumatic stress, 14:4, 615:632. Read, J., Fink, P.J., Rudegeair, T., Felitti, V., and Whitfield, C.L. (2008). Child Maltreatment and Psychosis: A Return to a Genuinely Integrated Bio-Psycho-Social Model. Clinical Schizophrenia & Related Psychoses.
- 9. Experiencing multiple childhood traumas appears to give approximately the same risk of developing psychosis as smoking does for developing lung cancer. (Bentall, cited in Slade & Longden, 2015) Slade, M., and Longden, E. (2015). Empirical evidence about recovery and mental health. BMC Psychiatry, 15, 285. doi: 10.1186/s12888-015-0678-4
- 10. Failure to acknowledge the reality of trauma and abuse in the lives of children, and the long- term impact this can have in the lives of adults, is one of the most significant clinical and moral deficits of current mental health approaches. (Prof Louise Newman cited in Kezelman & Stavropoulos, 2012) Kezelman, C. and Stavropoulos, P. (2012). Practice guidelines for the treatment of complex trauma and trauma informed care and service delivery. Australia: Adults Surviving Child Abuse (ASCA).
- 11. How common is the experience of ineffective or harmful treatment? 63% of Australians diagnosed with psychosis do not have good ‘recovery’ outcomes Morgan VA, Waterreus A, Jablensky A, Mackinnon A, McGrath JJ, Carr V, et al. (2011). People living with psychotic illness 2010. Canberra: Australian Government Department of Health and Ageing. “Good” recovery means minimal or no impairment – relates to clinical definitions of recovery. Single episode, recovery Multiple episodes, good recovery in between Multiple episodes, partial recovery in between Continuous chronic unwellness Continuous chronic unwellness with deterioration
- 13. In order to prevent one assault by a person diagnosed with schizophrenia, 304 people have to be forcibly detained & treated. Scholten, M., Gather, J., & Vollmann, J. (2017). Psychiatric risk assessment, involuntary treatment, and discrimination of persons with mental disorder. The 10th European Congress on Violence in Clinical Psychiatry.
- 14. In order to prevent one homicide by a person diagnosed with schizophrenia, 4,286 people have to be forcibly detained & treated. Scholten, M., Gather, J., & Vollmann, J. (2017). Psychiatric risk assessment, involuntary treatment, and discrimination of persons with mental disorder. The 10th European Congress on Violence in Clinical Psychiatry.
- 16. Working inside the system
- 17. Barriers for consumer workers Common roadblocks • Common statements, acts & processes that silence our voice Emotional safety barriers • Many types • Undermine us through emotional harm • Often invisible to others • Impact can be pathologised and spawn more barriers Organisational / structural barriers • Many types • All based in power
- 18. Common roadblocks that silence consumers • Sorry but that’s a minority view • I’d love to, but we don’t have time • That’s a subjective view • But what about… / that’s like when… • Is that representative of all consumers? • Where’s your evidence? • That’s not reasonable • You don’t understand • What current consumers say is more relevant • The consumers I know don’t say that • You can’t say that here
- 19. Emotional safety barriers for consumer workers
- 20. Isolation
- 22. Trauma
- 25. Pathologisation
- 29. This is NOT an acceptable response If it’s so unsafe, maybe we shouldn’t employ consumers here.
- 30. This IS an acceptable response If it’s so unsafe, maybe we should make it safe.
- 31. This is also NOT an acceptable response But what you’re asking is too hard. It will never happen here.
- 32. Once people thought it was too hard to make workplaces safe & respectful for women.
- 33. • Pay inequality • Lack of formal power • Under-resourced • Lack of role clarity • Colonisation of our practice and principles • Lack of understanding about how & why we work • Working with us is optional, not authorised • We’re invited at the end, not the beginning • We contribute to the work of others rather than lead our own Organisational & structural barriers that create tokenism for consumer roles
- 34. Consumer influence… why don’t these systems really listen to us?
- 35. Consumers Mental health sector The customer The provider Mental and emotional distress The problem The aim Recovery & Health I used to think this was how we were positioned in the system
- 36. General public Mental health sector The customer The provider The aim Public safety & sound economy The problem Consumers (violence) I’ve come to understand that this is a more accurate reality. We are NOT seen as the customer. We are the PROBLEM.
- 37. Society is still drenched in beliefs that we are violent and dangerous…
- 40. The consumer movement is the smallest and least powerful of all influencers.
- 42. Influencers • Economy • General public • Media • Professional bodies • Psychiatrists • Nursing unions • Sector organisations • Justice sector, emergency services • Carers • Not knowing Often we talk about BigPharma, but there are actually many complex influencers. They ALL have more power than us.
- 43. Where is the best place to influence change? On the inside or on the outside?
- 44. If you don’t have a seat at the table, you’re probably on the menu.
- 45. The master’s tools will never dismantle the master’s house. Audre Lorde
- 46. Inside Outside
- 47. Inside Knowledge Some influence Paid Restricted voice Still ‘the other’ Unsafe workplaces Others set agenda Risk of drift / colonisation Outside Free voice Ethical alignment Set own agenda Lacking info, contacts No – low pay Less respect ?
- 48. ?
- 51. Holding true to peer work ‘What consumers want is …’ United we stand, divided we fall. Aesop.
- 52. A matrix for understanding different consumer priorities
- 53. Different experiences of treatment Helpful treatment Harmful treatment • Diagnosis is helpful • Medication or ECT is helpful • Leave feeling better • Diagnosis doesn’t make sense / feels disempowering • Medication or ECT doesn’t help – or make things worse • No more helpful options provided • Leave feeling worse
- 54. Different experiences of services Safe servicesHarmful services • Seclusion • Restraint, including chemical • Forced detention & treatment • Coercion • Harassment, violence, assault • Poor prognosis > lost hope • Human rights upheld • Beliefs respected • Physically & emotionally safe • Chance to learn & find power • Motivated, hopeful, supported • Disabling side effects • Disrespect, lost dignity • Not being believed • Discriminatory attitudes • Fear, anger, despair, shame • Compassion, respect, dignity • Self-determination • Treatment options • Trauma recognised & addressed • Choices upheld
- 55. Different sets of experiences Helpful treatment Harmful treatment Safe servicesHarmful services ? ?? ?
- 56. Different priorities • Human rights • Society is broken, not us (‘Recovery in the bin’) • Mad Pride • Respect & compassion • Gender safety • Diversity inclusiveness • Recovery • Address trauma & spirituality • Therapy, counselling, peer support • Access & info • Continuity of care • Discrimination Helpful treatment Harmful treatment Safe servicesHarmful services
- 60. So, what can we do? Having Diversity & Finding Unity Being Inside & Outside Being the Problem & the Customer Safety & Barriers in our work
- 61. On the outside… • How do we build our own table & menu? • Priority issues? • What types of power can we use? • How do we resource ourselves? • How do we move from being the problem to the customer? • Attitudes & myths about madness, violence, medical models of treatment • Lack of awareness about trauma and rights breaches • How do we strengthen our numbers, diversity & unity? • How do we stay connected with those on the ‘inside’? • How can we consolidate and distribute knowledge?
- 62. On the inside • How do we stay safe & sustain ourselves? • How do we protect the intent of our roles and prevent colonisation or drift? • How can we increase our influence on agendas, priorities, awareness and change? • What do we need to learn on the inside and how do we pass it on? • How can we hold diversity, unity and integrity? • When should we say ‘no’? • How can we enable more and stronger allies?
- 63. We are worth this struggle, but we have much work to do.
- 64. Work indigo.daya@dhhs.vic.gov.au Social media Indigo Daya @IndigoDaya Indigo Daya The blog that shouldn’t be written www.indigodaya.com
Notes de l'éditeur
- I hope that how we might feel, together, is a little more like this elephant and dog. We might be different on the surface, and we might think and do different things, but this doesn’t mean we can’t also sit together, share and reflect. So, let’s get into it.
- This is just one source of data that reminds us that the main strategy for treatment (medication) is not all that effective for a large group of people. This is not the whole picture, of course, but we must always remember that even when a treatment is evidence-based, that doesn’t mean the evidence says it works for everyone, or all the time.
- This is very simplistic, however the matrix can be helpful in thinking about four commonly seen consumer perspectives, and four different sets of consumer priorities. Which of these is right? They all are. For me, the issues in the top right quadrant are not my priorities at all – but I know they matter to many people. And so I can speak about my own experiences and priorities in the bottom two quadrants, but I have a duty to also acknowledge the priorities in the top two quadrants. These different perspectives can help us to think about recovery in a more sophisticated and helpful way.
- This is very simplistic, however the matrix can be helpful in thinking about four commonly seen consumer perspectives, and four different sets of consumer priorities. Which of these is right? They all are. For me, the issues in the top right quadrant are not my priorities at all – but I know they matter to many people. And so I can speak about my own experiences and priorities in the bottom two quadrants, but I have a duty to also acknowledge the priorities in the top two quadrants. These different perspectives can help us to think about recovery in a more sophisticated and helpful way.
- This is very simplistic, however the matrix can be helpful in thinking about four commonly seen consumer perspectives, and four different sets of consumer priorities. Which of these is right? They all are. For me, the issues in the top right quadrant are not my priorities at all – but I know they matter to many people. And so I can speak about my own experiences and priorities in the bottom two quadrants, but I have a duty to also acknowledge the priorities in the top two quadrants. These different perspectives can help us to think about recovery in a more sophisticated and helpful way.
- This is very simplistic, however the matrix can be helpful in thinking about four commonly seen consumer perspectives, and four different sets of consumer priorities. Which of these is right? They all are. For me, the issues in the top right quadrant are not my priorities at all – but I know they matter to many people. And so I can speak about my own experiences and priorities in the bottom two quadrants, but I have a duty to also acknowledge the priorities in the top two quadrants. These different perspectives can help us to think about recovery in a more sophisticated and helpful way.