1. SELF HELP ADDICTION RESOURCE CENTRE AND Emancipatory research in the addiction field: A partnership to promote empowerment and to understand the recovery process Gordon R. Storey CEO – Self Help Addiction Resource Centre Inc. Alexandre B. Laudet Director – Centre for the Study of Addiction and Recovery National Development and Research Institutes Inc. Funded by NIDA Grant R01-DA014409-03S1 CORRESPONDENCE: gstorey@sharc.org.au & laudet@ndri.org

2. 2 The Emancipatory Research Paradigm

3. 3 A post-modern conception for scientific inquiry? A post-modern conception for scientific inquiry? Emancipatory research makes no pretence of a dispassionate objectivity and it proclaims no pseudo-independence from the complex values and concerns that define us as human beings Emancipatory research makes no pretence of a dispassionate objectivity and it proclaims no pseudo-independence from the complex values and concerns that define us as human beings Rather, emancipatory research is driven by a robust commitment to end the oppression, the stigma and the discrimination of people affected by serious substance use problems Rather, emancipatory research is driven by a robust commitment to end the oppression, the stigma and the discrimination of people affected by serious substance use problems

4. 4 Herald Sun Newspaper 27-8-05 Melbourne, Australia A man collapses and is unconscious at the rear of the Victorian State Parliament. Instead of rushing to help him, police handcuff him leave him face down (not in the recovery position, but flat on his face) arrest his friends (who were the only people who bothered to call the ambulance), search him, seize his belongings and leave him until paramedics arrive to resuscitate him. POLICE CODE OF CONDUCT “I uphold the right in my role within the Victoria Police Force by acting with integrity and by providing service excellence to everyone”

5. 5 The Emancipatory Research Paradigm As people with lived experience of addiction and recovery, we are asking for acceptance and support of emancipatory research approaches As people with lived experience of addiction and recovery, we are asking for acceptance and support of emancipatory research approaches We have aspirations and hope about quality of life, valued roles, good outcomes, full recovery, self help, taking responsibility, empowerment and liberation We have aspirations and hope about quality of life, valued roles, good outcomes, full recovery, self help, taking responsibility, empowerment and liberation We are seeking support from visionary and skilled scientists to assist us to empower ourselves because we recognise and accept that only through a blend of two types of expertise working collaboratively (expertise by experience and expertise by profession) shall we achieve emancipation and the social conditions for wellbeing We are seeking support from visionary and skilled scientists to assist us to empower ourselves because we recognise and accept that only through a blend of two types of expertise working collaboratively (expertise by experience and expertise by profession) shall we achieve emancipation and the social conditions for wellbeing

6. 6 The Emancipatory Research Paradigm Despite an increasing interest in the ‘consumer perspective’, (rhetorically, even in the field of alcohol and other drugs), virtually all of focus of this interest remains professionally determined. Despite an increasing interest in the ‘consumer perspective’, (rhetorically, even in the field of alcohol and other drugs), virtually all of focus of this interest remains professionally determined. People affected by substance use problems continue to be systematically excluded: People affected by substance use problems continue to be systematically excluded: Our conditions are being defined for us Our conditions are being defined for us There is a pre-determined focus on pathology, deficits and “blaming the victim” There is a pre-determined focus on pathology, deficits and “blaming the victim” Our conditions are seen as psychological / individual disorders and the political, cultural and social dimensions (degradations) are largely ignored Our conditions are seen as psychological / individual disorders and the political, cultural and social dimensions (degradations) are largely ignored We are seen as passive recipients / subjects (largely incompetent) We are seen as passive recipients / subjects (largely incompetent) Power, resources, control and agenda setting remains exclusively in the hands of policy makers, researchers, service planners and treatment professionals Power, resources, control and agenda setting remains exclusively in the hands of policy makers, researchers, service planners and treatment professionals

7. 7 The Emancipatory Research Paradigm In contrast, similar to the aspirations and well documented needs of liberation movements among women, African-Americans, people with disabilities, people with same sex preferences and most recently, people with mental illness, we seek to end the oppression and improve the way people with serious substance use disorders are treated In contrast, similar to the aspirations and well documented needs of liberation movements among women, African-Americans, people with disabilities, people with same sex preferences and most recently, people with mental illness, we seek to end the oppression and improve the way people with serious substance use disorders are treated Emancipatory research has the capacity to become one key strategy in assisting people affected by substance use problems to speak out, to elevate their experiential expertise into a credible and meaningful knowledge base, to gain access to much needed resources, to better self manage their care needs, to take on valued roles and to lead fulfilling and worthwhile lives Emancipatory research has the capacity to become one key strategy in assisting people affected by substance use problems to speak out, to elevate their experiential expertise into a credible and meaningful knowledge base, to gain access to much needed resources, to better self manage their care needs, to take on valued roles and to lead fulfilling and worthwhile lives

8. 8 The Emancipatory Research Paradigm The strategies: The strategies: Build robust partnerships with visionary professionals Build robust partnerships with visionary professionals Define a new epistemology based on lived experience of addiction and recovery Define a new epistemology based on lived experience of addiction and recovery Develop and articulate a research agenda for and by the people directly affected Develop and articulate a research agenda for and by the people directly affected Provide opportunities for gaining relevant knowledge and skills Provide opportunities for gaining relevant knowledge and skills Encourage full participation and empowerment through providing access to valued, respected and meaningful roles Encourage full participation and empowerment through providing access to valued, respected and meaningful roles Continue to raise awareness and disseminate knowledge in an effort to assist people affected to take better control over their lives, to become familiar with ‘ways of thinking’ about their condition and to better understand and support the need for an emancipatory movement Continue to raise awareness and disseminate knowledge in an effort to assist people affected to take better control over their lives, to become familiar with ‘ways of thinking’ about their condition and to better understand and support the need for an emancipatory movement

9. 9 Putting the Vision into Practice

10. 10 Putting the vision into practice Robust partnerships between expertise by experience and expertise by profession: Robust partnerships between expertise by experience and expertise by profession: The National Development and Research Institutes – a New York based research and educational organisation working in the areas of drug and alcohol treatment and recovery; HIV, AIDS and HCV; therapeutic communities; youth at risk; and related areas of public health, mental health, criminal justice, urban problems, prevention and epidemiology The National Development and Research Institutes – a New York based research and educational organisation working in the areas of drug and alcohol treatment and recovery; HIV, AIDS and HCV; therapeutic communities; youth at risk; and related areas of public health, mental health, criminal justice, urban problems, prevention and epidemiology The Self Help Addiction Resource Centre – a peer based organisation in Melbourne which combines the expertise of ‘experientialists’ with skilled professional practice to provide services that include residential recovery support, help for families and carers and advocacy for people affected by serious and chronic substance use problems The Self Help Addiction Resource Centre – a peer based organisation in Melbourne which combines the expertise of ‘experientialists’ with skilled professional practice to provide services that include residential recovery support, help for families and carers and advocacy for people affected by serious and chronic substance use problems

11. 11 Putting the vision into practice Define a new epistemology based on lived experience of addiction and recovery Define a new epistemology based on lived experience of addiction and recovery Systematically document experiential learnings of people who have been “through it” Systematically document experiential learnings of people who have been “through it” Create an empirical knowledge base founded on ‘experiential expertise’ Create an empirical knowledge base founded on ‘experiential expertise’ Demonstrate that experiential knowledge (the experiential frame of reference is a valid way of knowing the world) Demonstrate that experiential knowledge (the experiential frame of reference is a valid way of knowing the world) Reclaim the ‘cultural authority’ to define reality, to construct meanings and to articulate values that are gained by personal subjective experience Reclaim the ‘cultural authority’ to define reality, to construct meanings and to articulate values that are gained by personal subjective experience Elevate experiential expertise to a level of credibility and authority equal to the expertise of a scientist or professional Elevate experiential expertise to a level of credibility and authority equal to the expertise of a scientist or professional

12. 12 Putting the vision into practice Develop and articulate a research agenda for and by the people directly affected Develop and articulate a research agenda for and by the people directly affected THE PATHWAYS PROJECTS: THE PATHWAYS PROJECTS: A cross-cultural exploration of addiction recovery processes and experiences in the United States and Australia

13. 13 Pathways Projects Pathways New York Pathways New York A 5 year NIDA funded longitudinal study investigating the factors associated with stable recovery over time (data collected 4 times at yearly intervals) A 5 year NIDA funded longitudinal study investigating the factors associated with stable recovery over time (data collected 4 times at yearly intervals) Semi-structured interviews and qualitative life history interviews Semi-structured interviews and qualitative life history interviews A baseline group of 354 participants self identified as ‘in recovery’ (from 1 month to 10 years) A baseline group of 354 participants self identified as ‘in recovery’ (from 1 month to 10 years) Pathways Australia Pathways Australia A 2 year NIDA funded cross-sectional replication of Pathways New York A 2 year NIDA funded cross-sectional replication of Pathways New York The project commenced in April 2005 and we are seeking 160 participants The project commenced in April 2005 and we are seeking 160 participants

14. 14 Why study the recovery process It is a wellness (strengths-based) focus in contrast to one based on pathology It is a wellness (strengths-based) focus in contrast to one based on pathology The approach stresses the importance of experiential authority in building a knowledge and skill base for successful strategies for living, identifying needs and other determinants of recovery and relapse The approach stresses the importance of experiential authority in building a knowledge and skill base for successful strategies for living, identifying needs and other determinants of recovery and relapse We know very little about how recovering persons achieve and maintain their status over time ( in terms of locating skills, assets and capacities), We know very little about how recovering persons achieve and maintain their status over time ( in terms of locating skills, assets and capacities), Learnings from the recovering community can contribute to: Learnings from the recovering community can contribute to: Instillation of hope (non-illusory hope), Instillation of hope (non-illusory hope), Identification of recovery capital Identification of recovery capital Building robust and more accessible recovery pathways Building robust and more accessible recovery pathways

15. 15 Putting the vision into practice Provide opportunities for gaining relevant knowledge and skills and for participation and empowerment: Provide opportunities for gaining relevant knowledge and skills and for participation and empowerment: Starting with the proposition that experts by experience have the requisite competencies and capacities to take on valued and meaningful roles Starting with the proposition that experts by experience have the requisite competencies and capacities to take on valued and meaningful roles Designed situations where the ‘object’ of the research has the opportunity to become the researcher Designed situations where the ‘object’ of the research has the opportunity to become the researcher In Australia, lived addiction and recovery experiences were key criteria in staff selection In Australia, lived addiction and recovery experiences were key criteria in staff selection Experientialists participated fully in the design and review of the instruments Experientialists participated fully in the design and review of the instruments Study data is being collected by trained experientialists Study data is being collected by trained experientialists The experientialist is empowered through taking on a high status role The experientialist is empowered through taking on a high status role

16. 16 Putting the vision into practice Continue to raise awareness and disseminate knowledge in an effort to assist people affected to take better control over their lives, to become familiar with ‘ways of thinking’ about their condition and to better understand and ‘make a decision’ to embrace the need for an emancipatory movement Continue to raise awareness and disseminate knowledge in an effort to assist people affected to take better control over their lives, to become familiar with ‘ways of thinking’ about their condition and to better understand and ‘make a decision’ to embrace the need for an emancipatory movement Findings are being and will be interpreted, reported and disseminated from and for both the scientific and experientialist perspective. Findings are being and will be interpreted, reported and disseminated from and for both the scientific and experientialist perspective. A key imperative of this research is to provide the findings of what is perceived and experienced by people - directly back to the people affected A key imperative of this research is to provide the findings of what is perceived and experienced by people - directly back to the people affected

17. 17 The experiential body of knowledge Definitions of recovery Definitions of recovery Biggest challenges, reasons for relapse Biggest challenges, reasons for relapse Strategies for living and lessons learned Strategies for living and lessons learned Essential supports, recovery capital Essential supports, recovery capital Rewards – the “fruits” of recovery Rewards – the “fruits” of recovery Conceptions of what constitutes quality of life / well being Conceptions of what constitutes quality of life / well being Conceptions of meaning of life issues, spirituality, reason for being Conceptions of meaning of life issues, spirituality, reason for being Determinants / predictors of long term recovery Determinants / predictors of long term recovery Development of a ‘politics of emancipation’ through equal partnerships between the researchers and the researched Development of a ‘politics of emancipation’ through equal partnerships between the researchers and the researched

18. NOTHING ABOUT US – WITHOUT US

19. 19 PATHWAYS For correspondence For correspondence gstorey@sharc.org.au gstorey@sharc.org.au gstorey@sharc.org.au laudet@ndri.org laudet@ndri.org laudet@ndri.org For copies of the presentations and findings to date For copies of the presentations and findings to date www.ndri.org/ctrs/cstar.html www.ndri.org/ctrs/cstar.html www.ndri.org/ctrs/cstar.html SHARC website SHARC website www.sharc.org.au www.sharc.org.au