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.

1. NARRATIVE HEALTH
and
SOCIAL JUSTICE
Story of Self
Story of Us
Story of Now

2. Marina Tsaplina
PwD, PwHoDaAS, PACaP, NMP, MmPHA
Founder, Executive, and Artistic Director
The BETES Organization

4. Our Mission

5. Our Mission
1. To involve, empower, and activate people with chronic health conditions in their own self-
care and management.

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.

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.

8. 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.

9. “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.

10. 2 KEY IDEAS AND WORDS

11. 2 KEY IDEAS AND WORDS
NARRATIVE / STORY
A relating structure that organizes events and
human actions into a
meaningful whole.

12. 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.

13. 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.

14. KEY QUESTION
How does narrative lead to agency?

16. THE ANATOMY OF A STORY

17. THE ANATOMY OF A STORY
What is a Story?

18. a.
The king died, and then the queen died.
Function: Anatomy of Story - What is a Story?

19. 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?

20. MEANING
RELATIONSHIP
PURPOSE
EXPERIENCE
EMOTION
Function: Anatomy of Story - What is a Story?

21. How is meaning in a story created?
Function: Anatomy of Story - How is meaning created?

22. Marina Tsaplina
PwD, PwHoDaAS
PACAP, NMP, MmPHA
Function: Anatomy of Story - How is meaning created?

23. 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?

24. story

25. story

28. Three “categories” for narrative context:
1. biographical
(personal and family history)
2. historical
(cultural)
3. institutional
Function: Anatomy of Story - How is meaning created?

29. !

30. My Haiku-(ish):
Between
Unwritten
Fill-in-the-Dots
Identify
Context
Function: Anatomy of Story - How is meaning created?

31. My Haiku-(ish):
Between
Unwritten
Fill-in-the-Dots
Identify
Context
(biographical historical institutional)
Function: Anatomy of Story - How is meaning created?

32. 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?

33. NARRATIVE COMPETENCE
Power: How is meaning created?

34. NARRATIVE COMPETENCE
NARRATIVE HUMILITY
Power: How is meaning created?

35. NARRATIVE COMPETENCE
NARRATIVE HUMILITY
“mind the gap between self and other”
Power: How is meaning created?

36. NARRATIVE COMPETENCE
NARRATIVE HUMILITY
“mind the gap between self and other”
Who speaks?
Power: How is meaning created?

37. NARRATIVE COMPETENCE
NARRATIVE HUMILITY
“mind the gap between self and other”
Who speaks?
Who listens?
Power: How is meaning created?

38. NARRATIVE COMPETENCE
NARRATIVE HUMILITY
“mind the gap between self and other”
Who speaks?
Who listens?
Who tells?
Power: How is meaning created?

39. NARRATIVE COMPETENCE
NARRATIVE HUMILITY
“mind the gap between self and other”
Who speaks?
Who listens?
Who tells?
Who remembers?
Power: How is meaning created?

41. Whose story is it?

43. Giving An Account of Self:

44. Giving An Account of Self:
Developing Personal
Agency

45. Giving An Account of Self:
Developing Personal
Agency
(the capacity to exercise
choice in the face of
uncertainty)

46. “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

47. “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

49. Despair Hope

50. Function + Power: purposeful action through story
The Necessary Role of
ANXIETY IN AGENCY

51. Function + Power: purposeful action through story
The Necessary Role of
ANXIETY IN AGENCY
in order to break through
old habits.

52. Function + Power: purposeful action through story
ANXIETY IN AGENCY
Fear

53. Function + Power: purposeful action through story
ANXIETY IN AGENCY
FEAR

54. Function + Power: purposeful action through story
ANXIETY IN AGENCY
FEAR
self doubt inertia
apathy
isolation

55. Function + Power: purposeful action through story
ANXIETY IN AGENCY
FEAR HOPE
self doubt inertia
apathy
isolation

56. Function + Power: purposeful action through story
ANXIETY IN AGENCY
FEAR HOPE
self doubt inertia
apathy
isolation

57. Function + Power: purposeful action through story
GOOD ANXIETY IN AGENCY
HOPE
Urgency Anger Self Efficacy Solidarity
You Can Make A Difference

58. Narrative does the emotional work
needed to exercise agency.

61. Agency cannot
happen without
presence.

62. Agency cannot
happen without
becoming
present.

63. Being present is
the opposite of
being numb.

64. The capacity to make ethical
choices in the face of
uncertainty cannot happen
without being present to pain
and the entire spectrum of
emotion.

69. There has been a
systemic
numbing in
medicine to the
experience of
illness.

70. There has been a
systemic
numbing in
medicine to the
presence of
illness.

71. We cannot numb
ourselves to our own
experiences.
We cannot lead
ethically when
we are numb.

72. [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.

73. “The metaphor for loss is empty hands”

74. I shall
not be
made
numb.

76. 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)

77. Public Narrative

78. Public Narrative
Story of Self

79. Public Narrative
Story of Self
Story of Us

80. Public Narrative
Story of Self
Story of Us
Story of Now

81. 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.

82. Public Narrative - Story of Us
What are the values that move
us as a community?
What constitutes our collective
identity?
Who is our “us” ?

83. 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.”

84. Public Narrative - Story of Us
Linking Our Values

85. Public Narrative - Story of Us
Linking Our Values
Type 1 + Type 2
No one wants to be
blamed for their
burden.

86. Public Narrative - Story of Us
Linking Our Values
Type 1 + Type 2
“I do not want to be
blamed for the illness
I carry.”

87. Public Narrative - Story of Us
Linking Our Values
Type 1 + Type 2
“But my diabetes is
my responsibility.”

88. Public Narrative - Story of Us
Linking Our Values
Type 1 + Type 2
Diabetes:
Not our fault.
Our responsibility.

89. Public Narrative - Story of Now
“It is when
Nightmare and Dream
come together that action
happens”

90. Public Narrative - Story of Now
Hope is specific.

91. Public Narrative - Story of Now
Hope is specific.
“ Hope is strategy and vision coming
together to open a path forward.

92. 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.”

93. Narrative does the emotional work
needed to exercise agency.

94. 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.

95. Self
Us
Now
Motivation
Strategy
Action
Heart
Head
Hands
Presence.