Tribes and autopathography

I have blogged before about how one of the reasons I go to conferences is to help find my tribe. I’ve also said that I won’t go to conference unless I know a few people, as that is helps me be an insider, or at least a little connected.

Last week I attended two conferences. The first, the ALT-C conference, I definitely felt was not my tribe. I was excited to meet some of my online friends, and excited to be Virtually Connecting with a few people that I had interacted with online and deeply respected. But the conference itself did not align well with my interests. It was very much a conference about Learning Technology in the UK. I don’t live there. I don’t understand the context. And, although I do stuff with online learning, I’m not really that tied to the practitioner focus. I did have some great interactions with people, however, it did not feel like my tribe.

The other conference I attended was the Queens University of Belfast ePatient Blogging and Microblogging conference. Here I really felt like I was with my tribe. It is a new tribe for me. I was thrust into the world of being an ePatient when I was diagnosed with breast cancer last year. I immediately began blogging my breast cancer journey. I had some hope that it would be useful from an academic perspective, but I didn’t know what that would be. I knew that there was value in the reporting of lived experience through illness, I just didn’t know where that fit within the realm of academia. It was with that unknown lens that I did my presentation (part testimonial, part research report) – Cancer Blogging – A Survivor’s Journey.

It was at this conference that I learned there is a methodology associated directly with the field of study that interests me – pathography, or more specifically autopathography. Dictionary.com defines autopathography as: an autobiography that focuses on or is inspired by the influence of a disability, disease, or disorder on the author’s life. Even more useful, I’ve learned about a field of study called the medical humanities, as well as several academic journals that publish the patients case stories (that is, autopathographies).

You know you’ve found your field when you enjoy reading books about it. I’m now reading a book called The Wounded Storyteller: Body, Illness, and Ethics by Arthur W. Frank (who happens to be at the University of Calgary).  The book, among other things, talks about how illness narratives are a postmodern response to the very postpositivist healthcare system. As I read through the book so much resinates. Let me finish this post off with some interesting quotes from the book (sorry no page numbers, I’m reading the kindle version):

On rare occasions when I have taught this book, students’ biggest initial difficulty is to stop reframing everything ill people say into a question of how some health-care worker might respond. (Location 115)

Because stories can heal, the wounded healer and wounded storyteller are not separate, but are different aspects of the same figure. (Location 142)

They need to become storytellers in order to recover the voices that illness and its treatment often take away. (Location 144)

Sooner or later, everyone is a wounded storyteller. In postmodern times that identity is our promise and responsibility, our calamity and dignity. (Location 162)

The story of illness that trumps all others in the modern period is the medical narrative. The story told by the physician becomes the one against which others are ultimately judged true or false, useful or not. (Location 280)

The woman reported by Bourdieu seems to perceive that medicine has taken away her voice: medicine assails her with words she does not want to know and leaves her not knowing what. (Location 300)

What is distinct in postmodern times is people feeling a need for a voice they can recognize as their own. (Location 302)

Postmodern ties are when the capacity for telling one’s own story is reclaimed. (Location 304)

This next quote is something that I think voices what I’m feeling regarding my illness blogging, my writing, and my desire to make meaning out of it within the context of the medical system. I want my writing (that is my story) to cross the postmodern divide – that is, I want it to have meaning within the context of medicine and medical education. I don’t want it to be secondary to my medical records. I want it to have the same weight as my medical records.

The postmodern divide is crossed when people’s own stories are no longer told as secondary but have their own primary importance. (Location 309)

The possibility, even the necessity, of ill people telling their own stories has been set in place by the same modernist medicine that cannot contain these stories (Location 314)

Those who work to express this voice are not only postmodern but, more specifically, post-colonial in their construction of self. (Location 347)

Our identity as people and the world we once knew both are relinquishes; we become their patients and we live in their hospital. (Location 351)

For those whose diseases are cured, more or less quickly and permanently, medical colonization is a temporary indignity. (Location 353)

This reducing of the particular to the general provided for scientific achievements, but that clinical reduction created a benevolent form of colonialism. (Location 362)

In postmodern times more and more people, with varying degrees of articulation and action, express suspicion of medicine’s reduction of their suffering to its general unifying view. (Location 368)

Post-colonialism in its most generalized form is the demand to speak rather than being spoken for and to represent oneself rather than being represented or, in the worst cases, rather than being effaced entirely. (Location 395)

In Parsons’s sick role the ill person as patient was responsible only for getting well; in the remission society, the post-colonial ill person takes responsibility for what illness means in his life. (Location 403)

Illness responsibility is reduced to patient compliance. (Location 433)

Telling stories of illness is the attempt, instigated by the body’s disease, to give a voice to the experience that medicine cannot describe. (Location 472)

2 Comments on Tribes and autopathography

  1. Thanks for this Rebecca, began reading Arthur Frank when chemo started but realized the people caring for me were deaf to anything I said or represented as a human. The medical system is a very dangerous place and, ironically, very unsupportive of the basic needs for life to prosper.

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