Patient experience is widely discussed in health care but patient expertise is rarely given the authority it deserves. I have been immersed in hospital culture for almost two decades. First as an activist, then as a chronically ill patient, and now as a health care author, facilitator and consultant. My expertise comes from the literal root of the word—experience. Everything I know about healthcare, I have learned through and with my body.
If you need a patient expert to speak at your event, consult on your educational or creative project, facilitate a workshop for your staff, or offer insight on a personal project, let’s work together.
Writing our own illness stories is hard. Performing them is about ten billion times harder. When Robin Duke was diagnosed with breast cancer in 2008 her first instinct was to hide. Robin had written, performed and produced on stage and screen but she was determined that cancer was going to be a private performance. Now…Read More
Leaving New York from Laguardia yesterday my ostomy pouch was flagged in a TSA full body security scan. I was asked to step aside and told I needed to be searched. In front of staff and a crowd of fellow travellers the security officer pointed at the image of my body on the scanner, with…Read More
I had the pleasure of writing a review of Jen Powley’s memoir, Just Jen, for this month’s Quill & Quire. Memoir lovers and disability activists will appreciate Powley’s politics and her direct and unflinching prose. Personally though, the element of her story I was most struck by was her resourcefulness in creating human networks that…Read More