Narrative Health & Social Justice

The Betes Organization
The Betes OrganizationFounder, Executive and Artistic Director of The Betes Organization
NARRATIVE HEALTH
and
SOCIAL JUSTICE
Story of Self
Story of Us
Story of Now
Marina Tsaplina
PwD, PwHoDaAS, PACaP, NMP, MmPHA
Founder, Executive, and Artistic Director
The BETES Organization
Narrative Health & Social Justice
Our Mission
Our Mission
1. To involve, empower, and activate people with chronic health conditions in their own self-
care and management.
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.
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.
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.
“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.
2 KEY IDEAS AND WORDS
2 KEY IDEAS AND WORDS
NARRATIVE / STORY
A relating structure that organizes events and
human actions into a
meaningful whole.
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.
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.
KEY QUESTION
How does narrative lead to agency?
Narrative Health & Social Justice
THE ANATOMY OF A STORY
THE ANATOMY OF A STORY
What is a Story?
a.
The king died, and then the queen died.
Function: Anatomy of Story - What is a Story?
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?
MEANING
RELATIONSHIP
PURPOSE
EXPERIENCE
EMOTION
Function: Anatomy of Story - What is a Story?
How is meaning in a story created?
Function: Anatomy of Story - How is meaning created?
Marina Tsaplina
PwD, PwHoDaAS
PACAP, NMP, MmPHA
Function: Anatomy of Story - How is meaning created?
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?
story
story
Narrative Health & Social Justice
Narrative Health & Social Justice
Three “categories” for narrative context:
1. biographical
(personal and family history)
2. historical
(cultural)
3. institutional
Function: Anatomy of Story - How is meaning created?
!
My Haiku-(ish):
Between
Unwritten
Fill-in-the-Dots
Identify
Context
Function: Anatomy of Story - How is meaning created?
My Haiku-(ish):
Between
Unwritten
Fill-in-the-Dots
Identify
Context
(biographical historical institutional)
Function: Anatomy of Story - How is meaning created?
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?
NARRATIVE COMPETENCE
Power: How is meaning created?
NARRATIVE COMPETENCE
NARRATIVE HUMILITY
Power: How is meaning created?
NARRATIVE COMPETENCE
NARRATIVE HUMILITY
“mind the gap between self and other”
Power: How is meaning created?
NARRATIVE COMPETENCE
NARRATIVE HUMILITY
“mind the gap between self and other”
Who speaks?
Power: How is meaning created?
NARRATIVE COMPETENCE
NARRATIVE HUMILITY
“mind the gap between self and other”
Who speaks?
Who listens?
Power: How is meaning created?
NARRATIVE COMPETENCE
NARRATIVE HUMILITY
“mind the gap between self and other”
Who speaks?
Who listens?
Who tells?
Power: How is meaning created?
NARRATIVE COMPETENCE
NARRATIVE HUMILITY
“mind the gap between self and other”
Who speaks?
Who listens?
Who tells?
Who remembers?
Power: How is meaning created?
Narrative Health & Social Justice
Whose story is it?
Narrative Health & Social Justice
Giving An Account of Self:
Giving An Account of Self:
Developing Personal
Agency
Giving An Account of Self:
Developing Personal
Agency
(the capacity to exercise
choice in the face of
uncertainty)
“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
“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
Narrative Health & Social Justice
Despair Hope
Function + Power: purposeful action through story
The Necessary Role of
ANXIETY IN AGENCY
Function + Power: purposeful action through story
The Necessary Role of
ANXIETY IN AGENCY
in order to break through
old habits.
Function + Power: purposeful action through story
ANXIETY IN AGENCY
Fear
Function + Power: purposeful action through story
ANXIETY IN AGENCY
FEAR
Function + Power: purposeful action through story
ANXIETY IN AGENCY
FEAR
self doubt inertia
apathy
isolation
Function + Power: purposeful action through story
ANXIETY IN AGENCY
FEAR HOPE
self doubt inertia
apathy
isolation
Function + Power: purposeful action through story
ANXIETY IN AGENCY
FEAR HOPE
self doubt inertia
apathy
isolation
Function + Power: purposeful action through story
GOOD ANXIETY IN AGENCY
HOPE
Urgency Anger Self Efficacy Solidarity
You Can Make A Difference
Narrative does the emotional work
needed to exercise agency.
Narrative Health & Social Justice
Narrative Health & Social Justice
Agency cannot
happen without
presence.
Agency cannot
happen without
becoming
present.
Being present is
the opposite of
being numb.
The capacity to make ethical
choices in the face of
uncertainty cannot happen
without being present to pain
and the entire spectrum of
emotion.
Narrative Health & Social Justice
Narrative Health & Social Justice
Narrative Health & Social Justice
Narrative Health & Social Justice
There has been a
systemic
numbing in
medicine to the
experience of
illness.
There has been a
systemic
numbing in
medicine to the
presence of
illness.
We cannot numb
ourselves to our own
experiences.
We cannot lead
ethically when
we are numb.
[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.
“The metaphor for loss is empty hands”
I shall
not be
made
numb.
Narrative Health & Social Justice
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)
Public Narrative
Public Narrative
Story of Self
Public Narrative
Story of Self
Story of Us
Public Narrative
Story of Self
Story of Us
Story of Now
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.
Public Narrative - Story of Us
What are the values that move
us as a community?
What constitutes our collective
identity?
Who is our “us” ?
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.”
Public Narrative - Story of Us
Linking Our Values
Public Narrative - Story of Us
Linking Our Values
Type 1 + Type 2
No one wants to be
blamed for their
burden.
Public Narrative - Story of Us
Linking Our Values
Type 1 + Type 2
“I do not want to be
blamed for the illness
I carry.”
Public Narrative - Story of Us
Linking Our Values
Type 1 + Type 2
“But my diabetes is
my responsibility.”
Public Narrative - Story of Us
Linking Our Values
Type 1 + Type 2
Diabetes:
Not our fault.
Our responsibility.
Public Narrative - Story of Now
“It is when
Nightmare and Dream
come together that action
happens”
Public Narrative - Story of Now
Hope is specific.
Public Narrative - Story of Now
Hope is specific.
“ Hope is strategy and vision coming
together to open a path forward.
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.”
Narrative does the emotional work
needed to exercise agency.
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.
Self
Us
Now
Motivation
Strategy
Action
Heart
Head
Hands
Presence.
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Narrative Health & Social Justice

  • 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
  • 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?
  • 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. !
  • 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?
  • 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?
  • 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
  • 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.
  • 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”
  • 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)
  • 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.