narrative health & social justice

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

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NARRATIVE HEALTH and

SOCIAL JUSTICE

Story of Self Story of Us

Story of Now

Marina TsaplinaPwD, PwHoDaAS, PACaP, NMP, MmPHA

Founder, Executive, and Artistic DirectorThe BETES Organization

Our Mission

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

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.

KEY QUESTION

How does narrative lead to agency?

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?

MEANINGRELATIONSHIP

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 TsaplinaPwD, 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

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

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?

Whose story is it?

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

Despair Hope

Function + Power: purposeful action through story

The Necessary Role ofANXIETY IN 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

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.

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.

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.

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 SelfStory of Us

Public Narrative

Story of SelfStory 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 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

“It is whenNightmare 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.

SelfUsNow

MotivationStrategyAction

HeartHeadHands

Presence.