1. 1 Empowerment & Recovery in Mental Illness Presenters: Horst Peters Program Coordinator, Partnership for Consumer Empowerment Brandi Randell Partnership for Consumer Empowerment is a program of the Canadian Mental Health Association, Manitoba Division

2. 2 Overheads and Resources www.cmhamanitoba.ca Go to Partnership for Consumer Empowerment pages and then the resources pages.

3. 3 Introduction Why talk about Empowerment? Why talk about Recovery? Why are mental health consumers teaching this? What is Partnership for Consumer Empowerment?

4. 4 More for the Mind; a study of psychiatric services in Canada “In no other field, except perhaps leprosy, has there been as much confusion, misdirection and discrimination against the patient, as in mental illness… Down through the ages, they have been estranged by society and cast out to wander in the wilderness. Mental illness, even today, is all too often considered a crime to be punished, a sin to be expiated, a possessing demon to be exorcised, a disgrace to be hushed up, a personality weakness to be deplored or a welfare problem to be handled as cheaply as possible.”

5. 5 “ more than two thousand personal stories submitted to the Standing Senate Committee on Social affairs, Science and Technology by Canadians living with mental illness, and their families, make clear that these words continue to ring true.” Out of the Shadows at Last. Final report of the Standing Senate Committee on Social Affairs, Science and Technology. May 2006

6. 6 New Paradigm for Mental Health Prognosis of Doom replaced with the Reality of Hope: Well-being is Achievable! Persons with psychiatric disorders are no longer passive recipients of behaviour & symptom management oriented services. Choice, self-determination, and personal responsibility are key elements of recovery. Expertise of consumers is recognized and valued. Introduction

7. 7 Partnership for Consumer Empowerment developed out of a Manitoba Health, Mental Health Division, professional development seminar which was designed for mental health service providers to learn about this new paradigm from mental health service users. Introduction

8. 8 Value of Consumer Voice “To the people of Canada, I say welcome us into society as full partners. We are not to be feared or pitied. Remember, we are your mothers and fathers, sisters and brothers, your friends, co-workers and children. Join with us and travel together with us on our road to recovery.” Roy Muise (May 2005). Opening quote in the final report of the Standing Senate Committee on Social Affairs, Science, and Technology; Out of the shadows at last. May 2006.

9. 9 Objectives What is mental illness? What is the experience like? What helps and what hinders?

10. 10 What is Mental Illness? What is Mental Illness caused by?

11. 11 Mental Illness is: Genetic predisposition + Loss / Stress / Trauma Insufficient Knowledge, Supports, Coping, Resources Toews 1998

12. 12 Medical / Clinical Social Science ExperientialCustomary / Traditional A balanced understanding of mental illness Knowledge Resource Base A New Framework for Support 1993 Mental Illness is:

13. Population without genes for mental Illness Loss / Stress Emotionally Distressed Person Emotional Healing Cycle of Healing for People not Mentally Ill Fisher and Ahern (1999)

14. Balanced & Whole Loss / Stress Severe Emotional Distress Insufficient supports & coping Mentally Ill Mental Illness Cycle Fisher & Ahern (1999) Mentally Ill

15. 15 Mental Illness The Lived Experience

16. 16 DANGEROUS ? VIOLENT ? UNPREDICTABLE ? IRRESPONSIBLE ? DISTRESSED ? FRIGHTENED FRIGHTENED ? CONFUSED ? ANGRY ? POTENTIAL TO GROW AND CHANGE ? WHAT DO YOU SEE?

17. 17 Stigma and Myths Dangerous Irresponsible Dependent Incompetent Etc.

18. 18 History Family Friends Work Education Sexuality Politics Spirituality Hopes & Dreams Values & Beliefs PERSON

19. 19 Family Work History Values Spirituality Friends Education Politics Mental Illness

20. 20 “You’re at the point of discovering yourself and something comes in and identifies you without your consent. As a culture we have not yet recognized the courage it takes to live with this extra piece of life that is lived every day.”

21. 21 EDUCATION History Family Friends Work Education Sexuality Politics Spirituality Hopes & Dreams Values & Beliefs Illness / Disability Person Vulnerability

22. 22 Self-concept Self-efficacy Hopes and Dreams Emotional Impact Major Social Roles Engagement with “helping systems” Impact of Mental Illness

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26. 26 Impact of Illness Loss of Sense of Self Loss of Connectedness Guilt Shame Isolation Loss of Power Loss of Valued Role Loss of Hope Spaniol et al 1999

27. 27 Impact of Illness People are trying to cope with: The catastrophe of mental illness and multiple and recurring traumas. Trauma from the illness and trauma from how they are treated. Negative professional attitudes. Lack of appropriate assisting skills of professionals.

28. 28 What Helps & What Hinders?

29. 29 What helps and what hinders “The social power to define and categorize another person’s experience is not a power to be ignored. … in order to support persons who are trying to recover, we must attend to the fullness of their experiences, and not be distracted by their medical diagnoses.” McGruder 2001

30. The Central Attitudinal Barrier People with psychiatric disabilities cannot be self-determining because to be mentally ill means to have lost the capacity for sound reasoning. It means one is irrational and crazy. Thus all of the thoughts, choices, expressions, etc., of persons who have been diagnosed with mental illness can be ignored… Learned Helplessness The more the system takes control of our lives and choices, the more helpless, disempowered, irresponsible, and dependent we learn to become… The System Takes Control Therefore professionals within the system must take responsibility for us and our life choices… The Prophecy is Fulfilled As we become experts in being helpless patients, the central barrier is reinforced. * Deegan P. (1992) The Cycle of Disempowerment and Despair *

31. Self-Destroying Cycle adapted from D. Fisher & L.Ahern, 1999 Broken Brain Incompetence Powerless Fragmented / Machine-like Impairment Deterioration Decompensation Social Exclusion Coerced Compliance Alienated Fearful / Delusional Institutional Control Life Meaningless Hopeless Helplessness

32. Rehabilitation Cycle adapted from D.Fisher & L. Ahern, Rehabilitation Model, 1999 ILLNESS (deficit management) Knowledge (illness) Resources (illness management) Skills (illness coping) Supports (illness management) Behavior Management Symptom Management Compliance Education Relapse Prevention

33. 33 What helps and what hinders “I cannot think of anything more destructive of one’s sense of worth as a human being than to believe that the inner core of one’s being is sick – that one’s thoughts, values, feelings, and beliefs are merely the meaningless symptoms of a sick mind… What the concept of mental illness offered me was scientific proof that I was utterly worthless, and would always be worthless. It was just the nature of my genes, chemistry and brain processes – something I could do nothing about.” John Modrow – How to become a schizophrenic

34. 34 What helps and what hinders “The science of psychiatric diagnosis and treatment is neither objective, nor neutral nor value free. Rather, it is a social process open to bias and influenced by the larger social, political, and cultural milieu. McGruder 2001

35. EMPOWERMENT NO OPTIONS NO CHOICE NO VOICE NO CONTROL NO DIGNITY NO RESPONSIBILITY NO HOPE NO RECOVERY

36. 36 Brandi Randell Personal Story

37. 37 Self Injury Beyond the Myths Brandi Randell 2007/06/07

38. 38 Why I am speaking out. You should know this because I self Injure - I could be the person sitting next to you, your best friend, a family member an acquaintance or maybe even you.

39. 39 What is Self Injury? Also known as Self Harm, Self Abuse, Self Mutilation, Self Inflicted Violence Self Injury is a coping mechanism. Self injury on it’s own is not a mental illness but can be a symptom of several diagnosis. An individual harms their physical self to deal with emotional pain, or to break feelings of numbness by arousing sensation, to make flashbacks stop, to punish the self and stop self-hating thoughts, or to deal with a feeling of impending explosion.

40. 40 Some forms of Self Injury Although cutting is the most common form of Self Injury, burning and head-banging are also very common. Other forms include biting, skin-picking, hair- pulling, hitting the body with objects or hitting objects with the body and deliberately breaking bones

41. 41 To someone who has never deliberately hurt themselves, self injury may seem completely negative, destructive and unnecessary. It is hard to understand how someone can choose to inflict harm upon themselves; which is something we all try to avoid.

42. 42 Self injury is NOT Attention Seeking Manipulation For pleasure A group activity Cool, A trend An adrenaline rush A failed suicide attempt

43. 43 Who is likely to self injure? Their ages typically range from early teens to early 60s, although they may be older or younger. The incidence of self injury is about the same as that of eating disorders, but because it's so highly stigmatized, most people hide their scars, burns, and bruises carefully. Some people who Self injure manage to function effectively in demanding jobs. People who self injure come from all walks of life and all economic brackets.

44. 44 What doesn’t help. Judgment placed on individuals. Medical professionals who are unable to cope with their own feelings. Improper medical care. Psychological evaluations

45. 45 What helps people who self injure? CHOICE Supportive people Many therapeutic approaches have been and are being developed to help people that self injure learn new coping mechanisms and teach them how to use those techniques instead of self injury. Help lines Medications

46. 46 Recovery is possible! With proper supports. Self-determination. Having the choice is crucial to recovery.

47. 47 Empowerment

48. 48 Empowerment is an issue of social justice and refers to the process that people go through to gain or regain the power and control over their own lives that is necessary for dignity and self-determination. It requires that people have access to the means and opportunity to assume responsibility for their own lives and well-being.

49. 49 See Judi Chamberlin’s: A Working Definition of empowerment. (Link)(Link)

50. The person most likely to get well – to become empowered – is the person who feels free to question, to accept or reject treatment, and to communicate with and care for people who are caring for him… Ultimately, patient empowerment is a matter of self- determination; it occurs when a patient freely chooses his or her own path to recovery and well-being. It is the job of mental health services to provide an environment of personal respect, material support, and social justice that encourages the individual person in this process. Clay (1990)

51. 51 Recovery does not mean cure! Recovery

52. 52 Recovery “the obstacles to recovery are enormous, but the greatest obstacle is simply that people think one cannot recover!” www.recoverywisconson.com

53. 53 Recovery is Real People do recover! Schizophrenia - 60-70% Anxiety Disorders - 80% Bipolar Disorder- 80% Major Depression- 60% Personality Disorders- ?

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56. 56 Mental Health Recovery is a journey of healing and transformation enabling a person with a mental health problem to live a meaningful life in a community of his or her choice while striving to achieve his or her full potential. - National Consensus Statement on mental health recovery SAMHSA 2006

57. 57 Recovery is NOT an outcome of mental health services and supports! Mental health service and support outcomes must be environments that facilitate recovery!

58. 58 Newsweek article – medications alone couldn’t bring Robert back “the more we emphasize medications as key to recovery, the more we overlook what is at least as important: people working with people on a long-term basis.”

59. 59 Newsweek article – medications alone couldn’t bring Robert back “What does it matter if one medication is superior to another if people have no safe place to live, and therefore no opportunity to work, no choice of treatments and no access to dedicated individuals who are being paid decent wages to work with them?”

60. 60 Newsweek article – medications alone couldn’t bring Robert back “Let’s remember the pill is the ultimate downsizing. Let’s find resources to give people afflicted with mental illness what all of us need: fellow human beings upon whom we can depend to help us through our dark times and, once through, to emerge into gloriously imperfect lives.”

61. 61 Recovery Recovery does not occur by learning to avoid all of life’s stresses, and many people have found the professional’s advice to “avoid stress” to be unhelpful. Deegan (2004)

62. 62 Fundamental Components of Recovery Self-Direction Individualized Empowerment Holistic Non-Linear Strengths-Based Peer Support Respect Responsibility Hope SAMHSA Consensus Statement on Mental Health Recovery Feb 2006 http://www.samhsa.gov/news/newsreleases/060215_consumer.htm

63. 63 Recovery In a recovery oriented approach, the focus is on the person in the context of their life. The measure of success is not simply an absence of symptoms or reduction in inpatient admissions. In a recovery-oriented approach, success is also measured by how well we are able to pursue the things that give our lives purpose and meaning. Deegan (2004)

64. 64 Recovery involves CHANGE! Change at a systems level; Change at the service level; Most importantly, change at a personal level! Recovery

65. 65 Self empowering recovery is a personal reengagement with the process of life through… Reclaiming responsibility for one’s own life. The achievement of better health. The development of purpose, fulfillment, happiness and usefulness that everyone seeks. The reconnection with personal dreams and passions. The realization of one’s inner potential.

66. 66 Recovery and empowerment require us to move beyond helpless and hopeless victimhood.

67. 67 Recovery requires that we make choices Choose to believe that it is possible to have a better life. Choose to hope again. Choose to believe we are more than the sum total of our diagnosis, problems, failures and dysfunctions. Choose to believe that we have skills, talents, knowledge, and the ability to grow and change.

68. 68 Choose to believe that we are capable human beings that deserve dignity, love, and happiness in our lives. Choose to believe that we have the ability and power to address our dissatisfaction with our disabling and disempowering circumstances. Choose to forgive. Choose to accept forgiveness Recovery requires that we make choices

69. 69  Choose to believe that we need not live in fear of our thoughts, feelings and perceptions. To be truly alive is to experience the full range of emotions, thoughts and expressions. Choose to believe that the process of growth and healing requires us to step forward and take risks. Failures and successes are an integral part of the human experience and are essential to learning. Recovery requires that we make choices

70. 70 Choose to be responsible for our lives; our thoughts, feelings, opinions, beliefs, behaviours, and their consequences. Choose to change the behaviours, thoughts, beliefs, etc. in our lives that are a barrier to our recovery. Choose to take action! Recovery requires that we make choices

71. 71 Knowledge which cannot or is not put into action is not empowering !

72. 72 Recovery requires Action We must move from Beliefs to Action Develop an Action Plan In developing my action plan, I can ask myself a variety of questions: What are my problems, issues or concerns? What do I want to change about my life now? Given these challenges, what do I want to happen? How can I accomplish what I want to happen? What supports and resources do I have? What do I need? What do I want to do with my life? What do I have to do to reach that goal? Etc.

73. 73 I believe successful recovery requires me to connect with my dreams and/or passions – regardless of how outrageous or unrealistic (delusional?) they may seem at the time. I need to explore them and then choose to pursue or revise and/or redefine them.

74. 74 DO YOU HAVE A DREAM ?

75. 75 Dreams or Delusions ? “ Hold onto that delusion. Most people call them plans.” “Psychiatry has no label for delusions of grandeur that come to pass.” R.R. Fieve MD.

76. 76 My dreams cannot LIVE beside those who wish to hold onto doubts. I cannot DREAM where people are forever preoccupied with “reality”, with how things “are”.

77. 77 I cannot HOPE where people insist that what I desire can never come to pass, where merely discussing it is off base, where seeing things as they are is more important than envisioning how I would like them to become

78. 78 I require the freedom and self-determination To proceed under my own power, To succeed or fail Through my own efforts, To have my dreams and visions Meet the risk and uncertainty of daily life. This is RECOVERY adapted from Alan Lunt 2000 (used by permission)