On Saturday Feb 28th, the founder of the Big Apple Circus Paul Binder pronounced his vows of commitment to his Type 2 diabetes. The event, called “Marry the Beast” was the official launch of our organization and had close to 100 people in attendance. The event was covered by Riva Greenberg in the Huffington Post.
Marry the Beast
is a program that creates a space for people to understand their own “illness narratives” through a series of workshops and celebratory “weddings”.
An illness narrative is the life story of the person and their chronic condition as it exists in relationship to their love, dreams, pain, hope, family, community, culture, and health.
It deals with the emotional qualities of the illness experience and not the physical disease.
In Pauls’ own words:
” There was a deep sense of renewal of the vows I made 18 years ago, when I first learned I had diabetes. Saying them, once more, in front of a group of people, some of whom were my oldest friends, profoundly touched me.”
Finding the essence and evocativeness of his story
As part of the program, we also staged the writing of Rick Phillips, a fellow person with Type 1 diabetes for over 40 years.
“What does your diabetes look like?” is Rick’s remarkable response to the question that we asked in our online workshop “Make Your Own Betes” over at TuDiabetes.
It was a fascinating process translating his written words into a living, breathing piece of theater.
Of course, our primary purpose was to honor his “illness narrative”
We constantly asked ourselves to stay honest to his intention and meaning, not putting our interpretation of his words.
We did this by finding the essence of the core of his story, summarizing his thoughts into a condensed whole, and highlighting his evocative ideas by creating embodied imagery.
Interestingly, these are also the key aspects to Coding Qualitative Data:
“A code in qualitative inquiry is most often a word or short phrase that symbolically assigns a summative, salient, essence-capturing, and/or evocative attribute for a portion of language-based or visual data”
” Coding – using labels to classify and assign meaning to pieces of information—helps you to make sense of qualitative data, such as responses to open-ended survey questions. Codes answer the questions, “What do I see going on here?” or “How do I categorize the information?” Coding enables you to organize large amounts of text and to discover patterns that would be difficult to detect by reading alone. “
We were coding Rick’s story of his diabetes through our process of creating living theater !
( However, I did not know we were doing this until I presented The BETES’ work in Edgar Colon’s Qualitative Research Methods class at Columbia University one month later.
You can read about that in my blog entry here. )
Thank you to everyone for such an incredible evening – it was remarkable to have all of the people who were our guests, in the room, at the same time.
The event was a right of passage. World, we are coming.
Please help support our work in this critical time as we continue to build our organizations infrastructure in order to fill a critical gap in current care.