Friday, December 25, 2015

Why is it so easy to forget?

Two weeks ago, my co-instructor Wei led a session on “Diversity in Tech” in the UX Design Immersive course we teach for General Assembly in Austin. Somehow, the discussion shifted focus temporarily to the topic of homelessness, and I became dismayed at the extent to which some of the students appeared to rely on stereotypes when describing the Austin homeless. This occurred at the end of week 9 of the 10 week course, and the concept of empathy — a concept addressed repeatedly throughout the course — seemed to have been forgotten by some. Hmm… Having been homeless myself (as I’ve reported in this blog and elsewhere), I found myself becoming angry, but I (perhaps too easily) managed to hold my tongue.

The following Monday, I posted three links to the class Slack channel. One was to an article about the Rethink Homelessness project during which several of Orlando’s homeless were asked to share one thing about themselves that those walking by them would probably never expect. The results were “poignantly humanizing,” as reflected in the nearby image, one of many presented in the article.

Another link was to a similar article by dana boyd entitled, “San Francisco’s (In)Visible Class War: What you can learn by talking to homeless folks.” In it, dana tells of taking a shocked colleague who was talking like some of our students to go talk with a group of homeless people on San Francisco’s infamous 6th Street.
“I wish that more people working in the tech sector would take a moment to talk to these men and women. Listening to their stories is humbling. Vets who fought for our country, under the banner of ‘freedom,’ only to be cognitively imprisoned by addiction and mental illness. Abused runaways trying to find someone who will treat them with respect. People who were working hard and getting by until an accident struck and they lost their job and ended up in medical debt. Immigrants who came looking for the American Dream only to find themselves trapped. These aren’t no-good lazy leeches. They’re people. People whose lives have been a hell of a lot harder than most of us can even fathom. People who struggle on a daily basis to find food and shelter. People who we’ve systematically disenfranchised and failed to support. People who the bulk of tech workers ignore, shun, resent, and demonize.”
“14. Do you feel a sense of disgust or detest the way they smell, look, sound or behave?
15. Do you have any personal experience of homelessness?
16. Could you handle being homeless day after day and keep things together?
17. Would you smell better, behave better or beg less, than a homeless person does, if you did not have a home to go to for the next four weeks?”
The list is powerful. And I found that it was important that I read through it again myself, as well as again read through the other articles I reference above. Yes, I have had the personal experience of homelessness. Yet, to my dismay, my attitude towards Austin’s homeless was not far from that expressed by some of our students. How embarrassing… How sad…

Today is Christmas. A year ago, as I reported in this blog:
“...I ate my Christmas meal at the St. Vincent de Paul Society dining room where free meals are served to those in need. … I used to eat there almost daily when I was living on the street… Now I go to remember that experience and to once again rid myself of fears and misconceptions that build over time in this society when living mostly removed from that way of life.”
Today, I went back. Today, I badly needed to go back.

Sunday, October 11, 2015

The loss — and regeneration — of self

As I’ve documented in this blog, my life went to hell back in 2009. I almost lost everything, and that included, as a recent blog post by Carolyn Thomas addressed, my sense of self. Carolyn refers to this type of loss as a form of suffering “that is often dismissed by health care providers.” She quotes Dr. Kathy Charmaz:
““chronically ill persons…observe their former self-images crumbling away without the simultaneous development of equally valued new ones. … The experiences and meanings upon which these ill persons had built former positive self-images are no longer available to them.”
Carolyn and Kathy describe the impact of this at the various stages of being a patient. Take, for example, pre-diagnosis:
“Physicians can discredit our own definitions of self when we’re seeking help for early troubling symptoms (e.g., when we try to convince a dismissive doctor: ‘I know my body, and something is just not right!’) Dr. Charmaz warns that physicians sometimes treat undiagnosed persons ‘as neurotics whose symptoms are either nonexistent or psychosomatic in origin, leaving the patients feeling unsupported…’”
This matches my experience.

Carolyn and Kathy make a distinction:
“On one hand, you have those who are still living with the debilitating daily reality of chronic illness. These are not the same at all as those who at one time in the past may have had an episode of serious illness — but then got better. ‘For (the latter group), such periods of serious illness became the foundation for re-evaluation and change of self. These individuals (speak) of earlier crises as periods of time when they were free from the ordinary bonds of routine existence. That freedom heightened their consciousness of who they were and who they wished to become. For these people, illness became a tool of self-discovery and a fundamental source of later self-development.’”
My illness provided time during which I re-evaluated who I was and wanted to be. Emerging from that time was a commitment to telling the story of my unnecessary healthcare nightmare and to find other ways via which I could help to bring about badly needed healthcare system change.

The amazing Medicine X conference — with its roots in Medicine 2.0’11 — strengthened that commitment, as I was designated a ePatient scholar by the conference for 3 years. My sense of self was newly formed. I had a new mission in life.

But a large part of my working to achieve that mission overlapped with my previous life as I began to focus on talking and writing about ways experience design(ers) can maximize their impact on the healthcare system. Indeed, I’ve spoken about such things at experience design events (e.g., EPIC 2012 & Healthcare Experience Design 2013), and I’ve written about such things in blog posts and magazine articles (e.g., for UX magazine & interactions magazine).

And I began to work again in my field, with, particularly via my teaching at the Academy of Art University and General Assembly, a focus on experience design in any industry, not just healthcare. So that new sense of self began to be pushed aside by a sense of self much like that which I had before I became ill.

I’m still involved with Medicine X. I was there at the most recent conference in Stanford last month, where I helped moderate a day-long session on applying neuroscience concepts to healthcare design. I program a series of events year round under the title of the San Francisco Bay Area chapter of Medicine X. I’m even planning a Medicine X pop-up event in Austin for next month. But am I doing as much as I had hoped to do?

In my previous blog post of last December, I bemoaned the fact that I had stopped telling the story of my healthcare nightmare. Should I actually still be telling that story?

This week, I start teaching another 10-week UX design immersive course for General Assembly. I also find myself (with 3 others) confronted by the chore of reading and evaluating over 100 UX-related case studies which have been submitted for consideration for presentation at the CHI 2016 conference. Healthcare is not the (direct) focus of most of all this.

What sense of self will win out or emerge going forward?