jesse_the_k: mirror reflection of 1/3 of my head, creating a central third eye, a heart shaped face, and a super-pucker mouth (Default)
[personal profile] jesse_the_k
Found three nifty resources as I was preparing for my WisCon panel (NEXT WEEK!)

Beyond the Fix or How Do I Live this F*ing Life?
10am Saturday in C5 second floor
virtually #BeyondTheFix on Twitter

I’m thrilled about these rockstar panelists:
Elena Tabachnick (M), Kate Carey, Shayla Dunn, and Lenore Jean Jones1

Full WisCon Schedule: https://account.wiscon.net/grid?search=&view=list


Jess Jacobs' blog is a wonderful site

Jacobs, who died in August 2016, was a health policy maven, with a Master’s in public health. She consulted with insurance companies, did statistical quality analyses, and worked on those issues at the Federal level in the Obama-era Health & Social Services department.

What makes her writing super-great is she also had Syndrome,2 and it took her decades to get a definite diagnosis. She was endowed with a useful double consciousness, perceiving the medical system as both an insider and outsider.

I was stunned by her detailed statistical work-up of one year spent getting health care. She tallied two entire months of pointless interaction during that time, in addition to the 1.13 days of useful medical events

http://jessjacobs.me/on-wasting-my-time-the-numbers

Her post on a terrifying series of hospitalizations was particularly heartbreaking and illuminating:

http://jessjacobs.me/worst-experience

Many of us are too familiar with medical horror stories. What makes Jess’ work useful is her integrated analysis from the meta down to the personal: this essay helped me feel that my horrible doctoring wasn’t personal, but the result of a broken system. (I knew it intellectually, but Jess’ story brought it into the gut level.)


I learned about Jacob’s blog from the multimedia offerings of Cara Gael [twitter.com profile] bimpse at the In Sickness site

http://insicknesspod.com

She creates a podcast (accessible to all thanks to complete transcripts), remarkable self-reflective photographs, and a blog. Her topics:

our relationships with our bodies, and issues at the intersections with chronic illness, disability, healthcare, and mortality. […snip…] Where the personal is political, and where bodily autonomy, healthcare, and disability rights are considered human rights without question.


Nifty listening from the Fully Sick podcast

https://www.facebook.com/fullysickpodcast, where every two weeks Australian Jenny O’Keefe (who has fibromyalgia) interviews another person about their lives with a particular impairment. O’Keefe is a good interviews: energetic but not perky, down to earth, and commonalities among our experiences emerge quite clearly.

The Fully Sick podcast is on Soundcloud, iTunes, and wherever else you grab audio knowledge.


  1. Elena & Kate were on the amazing Death panel last year ↩︎
  2. thanks to [personal profile] sasha_feather for this handy generic term for the unknown what-ails-us ↩︎
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jesse_the_k: mirror reflection of 1/3 of my head, creating a central third eye, a heart shaped face, and a super-pucker mouth (Default)
Jesse the K

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