BUILDING BRIDGES OF HOPE: A SELF DETERMINATION & HUMAN RIGHTS ORIENTED CURRICULUM FOR PARENTS OF TRANSITION AGE YOUTH WHO EXPERIENCE EXTREME STATES, HEAR VOICES AND/OR EXPERIENCE EXTREME EMOTIONAL DISTRESS By Danielle Aubin A project presented to The Faculty of Humboldt State University In Partial Fulfillment of the Requirements of the Degree of Master of Social Work Committee Membership Dr. Jen Maguire, Committee Chair Sheri Johnson, MSW, Committee Member Daria Sievers, MSW, LCSW, Community Partner Geneva Shaw, MSW, Graduate Coordinator May 2016 Abstract BUILDING BRIDGES OF HOPE: A SELF DETERMINATION & HUMAN RIGHTS ORIENTED CURRICULUM FOR PARENTS OF TRANSITION AGE YOUTH WHO EXPERIENCE EXTREME STATES, HEAR VOICES AND/OR EXPERIENCE EXTREME EMOTIONAL DISTRESS Danielle Aubin Parents of transition age youth (TAY) who hear voices and/or experience extreme states can be faced with the socially accepted idea that their child is “disabled for life.” Many of these parents believe this idea, and lose hope of recovery for their child who may struggle with what are commonly referred to as mental disorders. When the belief in recovery and wellness is minimized, parents and their loved ones begin to live in what Pat Deegan calls “a winter of despair” (Deegan, 1992). Parents gather bi-weekly to attend a support group I facilitate. As a Mental Health Rehabilitation Specialist facilitating this group for almost one year, it became apparent to me that living in a ‘winter of despair’ and having a pessimistic view of prognosis can be a common experience for many families and youth who have been labeled as “mentally ill.” Many parents I encountered appeared to live with the perception that there was little tangible hope for recovery and wellness from severe mental health issues. The purpose of this project is to interview experts in the mental health field and conduct an extensive review of the literature and other media in order to create a curriculum grounded in beliefs which support the human ability to recover and ii regenerate. The curriculum is based on information gathered from individuals who have and/or continue to experience extreme states, emotional distress and hearing voices. The guiding principles of the curriculum are supported by literature and resources that are recovery based with the goal of creating hope for the future, which Pat Deegan (1992) calls a “conspiracy of hope.” The curriculum is developed to help parents understand how to better support their children or loved ones who experience extreme states and/or hear voices, and that many people labeled as “mentally ill” are able to lead happy and fulfilling lives post-diagnosis. The curriculum is aimed at creating a healing environment to help parents become supportive advocates working together with their loved one toward a better future. iii Acknowledgements There are so many people who have been directly and indirectly responsible for my growth as a human being and as a Master of Social Work student. First of all, I want to thank the young people I have worked with throughout the years as a mental health worker. They and their families are the true inspiration behind this master’s project. Thank you to Caroline Mazel White who graciously allowed me to interview her and gently blew my mind with her lived wisdom and critique of my own blindness and pathologizing viewpoints. I want to take a moment of pause and silence to honor all the struggles that we as human beings face and the stigma and confusion surrounding mental health for us as a species. It is my deepest hope that all of us can work together to come up with a decolonized, empowerment based mental health system that serves people with compassion and respect. I want to thank the teachers who have helped me along this path: Dr. Yellow Bird, Jamie Jensen, ABD, Dr. Jen Maguire, Yatiel Owens, MSW, Sheri Johnson, MSW and Daria Sievers, MSW, LCSW. All of you have offered me the necessary tools to increase my capability for reflection, which has helped me grow into the activist, social worker and person that I am today, thank you. To my family, my parents, to Umugabo Wanjye Kunda – Ndagukunda cyane! and to all my friends who have supported me, thank you. Thank you Sunny Hills Services for almost three years of constant learning and growth. I want to thank all the countries that have let me into their borders to grow and learn. iv Without stepping out of my comfort zone and exploring other lands, I would not have had the courage to pursue Social Work and learn how to take steps to decolonize my mind. Thank you to all the people, animals, plants and minerals who contributed to the computer I used to write my project, to the shelter over my head and the food in my belly that made all of the work I have done possible. And last but not least, thank you and congratulations to all the members of my cohort, we did it! v Table of Contents Abstract ............................................................................................................................... ii Acknowledgements ............................................................................................................ iv Introduction ......................................................................................................................... 1 MSW Student Positionality ......................................................................................................... 2 Key Terms ................................................................................................................................... 3 My History and Experience in the Mental Health System .......................................................... 6 Stigmatizing Language .............................................................................................................. 11 History of Hope/Hopelessness (Euro-Western) ......................................................................... 14 Parents of TAY Who Experience Extreme States, Hear Voices and/or Experience Extreme Emotional istress ....................................................................................................................... 18 Family burden. ...................................................................................................................... 18 The impact and role of stigma. .............................................................................................. 20 The role of hope in families. ................................................................................................. 21 Transition Age Youth (TAY) and Extreme Experiences .......................................................... 23 The Need for a Support Group Curriculum that Promotes Self-determination, Human Rights and Hope .................................................................................................................................... 25 Methods............................................................................................................................. 26 Bridges of Hope Curriculum Development ............................................................................... 26 Theoretical Approach ................................................................................................................ 27 Description of Interview ............................................................................................................ 28 Interview Methods ..................................................................................................................... 30 Results ............................................................................................................................... 32 vi Interview of Expert .................................................................................................................... 32 Description of Curriculum ......................................................................................................... 33 Project outcomes. .................................................................................................................. 33 Conclusion ........................................................................................................................ 36 Curriculum Development .......................................................................................................... 36 Implications for Social Work Practice ....................................................................................... 43 Recommendations for Future Work .......................................................................................... 45 References ......................................................................................................................... 46 Appendix ........................................................................................................................... 55 vii 1 Introduction There are thousands of definitions and felt experiences of what extreme experiences/states, emotional distress and hearing voices mean to individuals as well as to communities of people around the world. Perceptions regarding hearing voices and what extreme experiences mean to people ranges from pathological viewpoints to viewpoints that see hearing voices as a shamanic ability. Although the American mental health field is becoming more inclusive of voices from people who have had first-hand knowledge of extreme states and hearing voices as evidenced by Hearing Voices groups located throughout the country, this