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Narrative Health & Social Justice

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How do stories work, what are the barriers to stories effectively communicating their meaning, and how do stories help lead to empowerment for both individuals with chronic illness and for a larger social movement?

This presentation is an analysis and synthesis of the work and research of The Betes Organization: it includes studies of storytelling for social movements by leading sociologists, research and concepts from the quickly evolving Narrative Medicine movement, the work of community organizer and public policy lecturer Marshall Ganz, and the findings of the theater-driven work of The Betes Organization.

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Narrative Health & Social Justice

  1. 1. NARRATIVE HEALTH and SOCIAL JUSTICE Story of Self Story of Us Story of Now
  2. 2. Marina Tsaplina PwD, PwHoDaAS, PACaP, NMP, MmPHA Founder, Executive, and Artistic Director The BETES Organization
  3. 3. Our Mission
  4. 4. Our Mission 1. To involve, empower, and activate people with chronic health conditions in their own self- care and management.
  5. 5. Our Mission 1. To involve, empower, and activate people with chronic health conditions in their own self- care and management. 2. To build empathic community in the practice of health care by strengthening the connection between patients, family members, and health care providers.
  6. 6. Our Mission 1. To involve, empower, and activate people with chronic health conditions in their own self- care and management. 2. To build empathic community in the practice of health care by strengthening the connection between patients, family members, and health care providers. 3. To embed theater, story, and creativity into the dialogue on health as essential components for well-being.
  7. 7. Our Mission 1. To involve, empower, and activate people with chronic health conditions in their own self- care and management. 2. To build empathic community in the practice of health care by strengthening the connection between patients, family members, and health care providers. 3. To embed theater, story, and creativity into the dialogue on health as essential components for well-being. 4. To advocate for cultural empathy and policy changes that reflect the understanding of the vital role of mental health for people with chronic health conditions.
  8. 8. “The core mission of narrative is to teach us how to exercise agency.” Marshall Ganz Senior lecturer in public policy at the Kennedy School of Government at Harvard University.
  9. 9. 2 KEY IDEAS AND WORDS
  10. 10. 2 KEY IDEAS AND WORDS NARRATIVE / STORY A relating structure that organizes events and human actions into a meaningful whole.
  11. 11. 2 KEY IDEAS AND WORDS NARRATIVE / STORY A relating structure that organizes events and human actions into a meaningful whole. AGENCY The capacity to exercise choice in the face of uncertainty.
  12. 12. Goal of this presentation: Understand the Structure and Function of Narrative and Feel Narrative’s Power in enabling Agency within personal and public health advocacy efforts.
  13. 13. KEY QUESTION How does narrative lead to agency?
  14. 14. THE ANATOMY OF A STORY
  15. 15. THE ANATOMY OF A STORY What is a Story?
  16. 16. a. The king died, and then the queen died. Function: Anatomy of Story - What is a Story?
  17. 17. a. The king died, and then the queen died. b. The king died, and then the queen died of grief. Function: Anatomy of Story - What is a Story?
  18. 18. MEANING RELATIONSHIP PURPOSE EXPERIENCE EMOTION Function: Anatomy of Story - What is a Story?
  19. 19. How is meaning in a story created? Function: Anatomy of Story - How is meaning created?
  20. 20. Marina Tsaplina PwD, PwHoDaAS PACAP, NMP, MmPHA Function: Anatomy of Story - How is meaning created?
  21. 21. Person With Diabetes, Person With History Of Depression And Attempted Suicide, Performing Artist Clown And Puppeteer, Narrative Medicine Practitioner, Mental Meets Physical Health Advocate Function: Anatomy of Story - How is meaning created?
  22. 22. story
  23. 23. story
  24. 24. Three “categories” for narrative context: 1. biographical (personal and family history) 2. historical (cultural) 3. institutional Function: Anatomy of Story - How is meaning created?
  25. 25. !
  26. 26. My Haiku-(ish): Between Unwritten Fill-in-the-Dots Identify Context Function: Anatomy of Story - How is meaning created?
  27. 27. My Haiku-(ish): Between Unwritten Fill-in-the-Dots Identify Context (biographical historical institutional) Function: Anatomy of Story - How is meaning created?
  28. 28. Age: 16 Gender: M How long with Type 1: 9 years “Yes, it helped me understand my diabetes much more. You learn a lot about yourself and diabetes.” Age: 15 Gender: M How long with Type 1: 9 years “Not really, throughout my life I’ve found ways to face both unpleasant and pleasant feelings. It is interesting and helpful if you have a new problem (diagnosis).” Power: How is meaning created?
  29. 29. NARRATIVE COMPETENCE Power: How is meaning created?
  30. 30. NARRATIVE COMPETENCE NARRATIVE HUMILITY Power: How is meaning created?
  31. 31. NARRATIVE COMPETENCE NARRATIVE HUMILITY “mind the gap between self and other” Power: How is meaning created?
  32. 32. NARRATIVE COMPETENCE NARRATIVE HUMILITY “mind the gap between self and other” Who speaks? Power: How is meaning created?
  33. 33. NARRATIVE COMPETENCE NARRATIVE HUMILITY “mind the gap between self and other” Who speaks? Who listens? Power: How is meaning created?
  34. 34. NARRATIVE COMPETENCE NARRATIVE HUMILITY “mind the gap between self and other” Who speaks? Who listens? Who tells? Power: How is meaning created?
  35. 35. NARRATIVE COMPETENCE NARRATIVE HUMILITY “mind the gap between self and other” Who speaks? Who listens? Who tells? Who remembers? Power: How is meaning created?
  36. 36. Whose story is it?
  37. 37. Giving An Account of Self:
  38. 38. Giving An Account of Self: Developing Personal Agency
  39. 39. Giving An Account of Self: Developing Personal Agency (the capacity to exercise choice in the face of uncertainty)
  40. 40. “Those who do not have power over the story that dominates their lives, the power to retell it, rethink it, deconstruct it, joke about it, and change it as times change, truly are powerless, because they cannot think new thoughts” - Salman Rushdie Giving An Account of Self - Personal Agency
  41. 41. “In the face of illness or adversity, injustice or trauma, stories help bridge what theorist Arthur Frank (1995) has called “narrative wreckage” – the point at which one’s old life plot is no longer valid, and one needs a new plot with which to continue life’s journey.” Giving An Account of Self - Personal Agency
  42. 42. Despair Hope
  43. 43. Function + Power: purposeful action through story The Necessary Role of ANXIETY IN AGENCY
  44. 44. Function + Power: purposeful action through story The Necessary Role of ANXIETY IN AGENCY in order to break through old habits.
  45. 45. Function + Power: purposeful action through story ANXIETY IN AGENCY Fear
  46. 46. Function + Power: purposeful action through story ANXIETY IN AGENCY FEAR
  47. 47. Function + Power: purposeful action through story ANXIETY IN AGENCY FEAR self doubt inertia apathy isolation
  48. 48. Function + Power: purposeful action through story ANXIETY IN AGENCY FEAR HOPE self doubt inertia apathy isolation
  49. 49. Function + Power: purposeful action through story ANXIETY IN AGENCY FEAR HOPE self doubt inertia apathy isolation
  50. 50. Function + Power: purposeful action through story GOOD ANXIETY IN AGENCY HOPE Urgency Anger Self Efficacy Solidarity You Can Make A Difference
  51. 51. Narrative does the emotional work needed to exercise agency.
  52. 52. Agency cannot happen without presence.
  53. 53. Agency cannot happen without becoming present.
  54. 54. Being present is the opposite of being numb.
  55. 55. The capacity to make ethical choices in the face of uncertainty cannot happen without being present to pain and the entire spectrum of emotion.
  56. 56. There has been a systemic numbing in medicine to the experience of illness.
  57. 57. There has been a systemic numbing in medicine to the presence of illness.
  58. 58. We cannot numb ourselves to our own experiences. We cannot lead ethically when we are numb.
  59. 59. [Diabetes Secret] Father’s Day was tough, because we’ve been trying for a long time, and nothing. I’m not a father even though I want to be. We have gone through IUI and nothing. We can’t afford more. And it appears that the motility-impacting culprit is diabetes, and the wonders of nerve damage. It doesn’t help when everyone else seems to be having kids, and my parents won’t shut up about it – especially in front of my wife, and it just breaks our hearts even more. I’ve accomplished many of my dreams in life, but this one… may have been stolen from me. And I feel mad that it’s a topic more men aren’t able or willing to talk about publicly, so we feel very alone in dealing with this. Yet, I’m not willing to share this publicly, and so I feel like a hypocrite.
  60. 60. “The metaphor for loss is empty hands”
  61. 61. I shall not be made numb.
  62. 62. Personal Agency meets Public Narrative: “ If you want to build a ship, don’t herd people together to collect wood and don’t assign them tasks and work, but rather teach them to long for the endless immensity of the sea ” Antoine de St. Exupéry (author of The Little Prince)
  63. 63. Public Narrative
  64. 64. Public Narrative Story of Self
  65. 65. Public Narrative Story of Self Story of Us
  66. 66. Public Narrative Story of Self Story of Us Story of Now
  67. 67. Public Narrative - Story of Self Where I came from, why I do what I do, and where I think I’m going. Challenge. Choice. Outcome.
  68. 68. Public Narrative - Story of Us What are the values that move us as a community? What constitutes our collective identity? Who is our “us” ?
  69. 69. Public Narrative - Story of Us Linking Our Values “If a story denies a persons’ self- conception, it does not matter what it says about the world. In order for an audience to accept what a story wants to communicate, the story must affirm and not negate the self-conception that audience members hold of themselves.”
  70. 70. Public Narrative - Story of Us Linking Our Values
  71. 71. Public Narrative - Story of Us Linking Our Values Type 1 + Type 2 No one wants to be blamed for their burden.
  72. 72. Public Narrative - Story of Us Linking Our Values Type 1 + Type 2 “I do not want to be blamed for the illness I carry.”
  73. 73. Public Narrative - Story of Us Linking Our Values Type 1 + Type 2 “But my diabetes is my responsibility.”
  74. 74. Public Narrative - Story of Us Linking Our Values Type 1 + Type 2 Diabetes: Not our fault. Our responsibility.
  75. 75. Public Narrative - Story of Now “It is when Nightmare and Dream come together that action happens”
  76. 76. Public Narrative - Story of Now Hope is specific.
  77. 77. Public Narrative - Story of Now Hope is specific. “ Hope is strategy and vision coming together to open a path forward.
  78. 78. Public Narrative - Story of Now Hope is specific. “ Hope is strategy and vision coming together to open a path forward. It is that moment in which story (why) and strategy (how) come together.”
  79. 79. Narrative does the emotional work needed to exercise agency.
  80. 80. Public Narrative - Self, Us, Now An effective public narrative inspires hope, raises questions, gives meaning, and unites heart, head and hands by translating shared values into a vision of hope and a strategy of action.
  81. 81. Self Us Now Motivation Strategy Action Heart Head Hands Presence.

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