two words can change everything.

Stories Reveal Meaning through Emotion

“…of grief.”
Without emotions, events have no meaning.

THE BETES places the rich and varied thoughts, feelings, and emotions that are inseparable from living with chronic invisible health conditions at the forefront of our work.  

The Lived Experience is a Tapestry of Stories

The missing piece in traditional health care systems is the meaning that life with an invisible chronic illness carries for each unique individual – whether patient, caregiver, or clinician. Meaning reveals itself through stories.

The Complete Picture: The Lived Experience in Health Care

“Stories tell of the quiet courage it takes to live with pain, of desperation alternating with hope, of families pulled apart [and brought together] by the pressures of a chronically ill parent or child. A story contains a meaning that goes beyond the anatomical and psychogenic malfunctions.”

Source: Arthur Kleinman, M.D. Medical Anthropology
“The Illness Narratives: Suffering, Healing and the Human Condition”


The lived experience is a seamless whole that emerges through narratives, over time. 

 

Why We Work With Theater and Puppetry

Theater and puppetry have a unique power to help visualize and create living metaphors in front of people’s eyes, helping to crystalize hidden, difficult-to-verbalize experiences that life with any chronic or acute condition brings on. Don’t take our word for it; simply read a selection of the many powerful responses we have had to our work since 2014:

This program helped with realizing what my diabetes really is. It really helped form a “relationship” with my diabetes

(F, 16, T1D 5 yrs)

It helped me realize how essential diabetic knowledge is to me.

(M, 17, T1D 16 years)

Thinking about diabetes being alive and having a personality really was interesting & made me think of it in a different way.

(F, 16, T1D 5 yrs)

” The workshop I attended this summer left me feeling enlightened and empowered. The performance put on by Marina articulated many of the feelings I have had about my own chronic illness. At one point, my breath was taken away as I realized the story she was telling was my own. The conversation between the audience after proved that everyone could relate to a portion of the piece. As a group we discovered that we all have a story that can impact others. We learned important techniques for telling our story. The feelings this workshop evoked will stay with me forever.

(Kimberly Hislop, Person with Diabetes)

The exercises allowed the ADA campers to have their own voice and share their experiences and emotions, in addition to some confronting some difficult emotions. I believe that the majority of adolescent campers who were able to take part in this exercise developed an improved awareness about their personal story and their diabetes. I believe that it began the process to take ownership of their chronic illness and empower themselves in their own care. ”

(Dr. Zachary Jacobs, Physician, StonyBrook Children’s Hospital)

“ Marina’s presentation at the beginning of Day 2–very powerful–made me think a lot about my own diabetes care. Campers seemed to be able to have a better idea of how their diabetes affects their lives–it made them think about how living with diabetes impacts all aspects of their daily living habits.”

(Beth Rowe, Resident Camp Director, The Barton Center for Diabetes Education, MA)

Why Not Call It The PsychoSocial Aspects ?

In medical and academic culture, professionals identify the influence of living with any physical condition as “the psycho-social” aspects of chronic illness. This means that on a  day-to-day basis, a person who lives with a physical health condition might experience:

  • physical aspects of their condition (i.e. low or high blood sugar, for people with diabetes.)
  • social aspects of their condition (i.e. excusing oneself from a professional or social situation due to low/high blood sugar)
  • psychological aspects of their condition (i.e. feeling distressed because of this intrusion of the physical into the social.)

 

These categories- though helpful- lack specificity and separate the lived experience into separate parts.

The lived experience is a seamless whole that emerges through narratives, over time.
(we repeat this in case you missed it the first time. 🙂 

THE BETES works to be specific and understand how these narratives interweave into and shape our lives. 

A Paradigm that Includes Qualitative Narrative Evidence

A paradigm is defined as “a set of assumptions and beliefs shared by a group of scientists about what the important questions are and how they should be tackled” (source: “Why do we always end up here?”) 

BETES” work sits at the crossroads of the disciplines of theater, medical anthropology, narrative medicine /medical humanities, psychology, behavioral science, and ethnography. Our work is understood best in the context provided in the below articles:

  1. A Hole in the Heart:  Confronting the drive for evidence-based impact research in arts and health (2012) http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3827737/pdf/emss-54113.pdf
  2. A Renaissance of Evidence-Based Medicine: a movement in crisis? (2014) http://www.bmj.com/content/348/bmj.g3725
  3. BMJ: International Journal of the Medical Humanities
    http://mh.bmj.com

Diabetes, and Beyond

Currently, all of our work is focused on the Type 1 Diabetes space. In 2017-2018, we will expand into the Type 2 space. The methods and way of creative work that we are developing are applicable across conditions and it is in our mission to expand to other health conditions. We have already created impact on people who do not have diabetes:

“I have a condition called CIDP, Chronic Inflammatory Demyelinating Polyneuropathy.  It is a rare and relatively all encompassing diagnosis for a vast array of autoimmune conditions that result in the loss of myelin, a protective nerve sheath, from my outer nervous system (everywhere but the spine and brain)…

…[THE BETES’] use of puppetry is brilliant, enabling people to identify an illness that is systemic and give it a voice and a representation in the best tradition of internal investigation. It sent me on a concerted effort to identify and at least start a dialogue with my illness.  Not seeing it as the “Other,” anymore but a part of me refusing to be silenced.  I am still on that journey coming to terms with my present life and relieving the anxiety of wanting my old self back.”

Stephen Ringold

Join Us

We are building our artistic, scientific, financial and strategic partners. We cannot realize the nation-wide impact we have the potential to create without your support. Here’s how you can join our groundbreaking work: