narrative health & social justice
Post on 15-Aug-2015
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Marina TsaplinaPwD, PwHoDaAS, PACaP, NMP, MmPHA
Founder, Executive, and Artistic DirectorThe BETES Organization
Our Mission1. To involve, empower, and activate people with chronic health conditions in their own self-
care and management.
Our Mission1. 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 Mission1. 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 Mission1. 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
NARRATIVE / STORYA relating structure that organizes events and
human actions into a meaningful whole.
2 KEY IDEAS AND WORDS
NARRATIVE / STORYA relating structure that organizes events and
human actions into a meaningful whole.
AGENCYThe capacity to exercise choice in the face of
uncertainty.
Goal of this presentation:Understand the Structure
and Function of Narrative
andFeel Narrative’s Power
in enabling Agency within personal and public health
advocacy efforts.
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?
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?
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):
BetweenUnwritten
Fill-in-the-DotsIdentifyContext
Function: Anatomy of Story - How is meaning created?
My Haiku-(ish):
BetweenUnwritten
Fill-in-the-DotsIdentifyContext
(biographical historical institutional)
Function: Anatomy of Story - How is meaning created?
Age: 16Gender: MHow long with Type 1: 9 years“Yes, it helped me understand my diabetes much more. You learn a lot about yourself and diabetes.”
Age: 15Gender: MHow 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 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?
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
Function + Power: purposeful action through story
The Necessary Role ofANXIETY IN AGENCY
in order to break through old habits.
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
The capacity to make ethical choices in the face of uncertainty cannot happen without being present to pain and the entire spectrum of emotion.
[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.
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 - 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 ValuesType 1 + Type 2
No one wants to be blamed for their burden.
Public Narrative - Story of Us
Linking Our ValuesType 1 + Type 2
“I do not want to be blamed for the illness I carry.”
Public Narrative - Story of Us
Linking Our ValuesType 1 + Type 2
“But my diabetes is my responsibility.”
Public Narrative - Story of Us
Linking Our ValuesType 1 + Type 2
Diabetes: Not our fault.
Our responsibility.
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.”
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.
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