Regina Holliday, founder of the The Walking Gallery, began the social movement because of something personal—her husband Fred Holliday’s death from metastatic kidney cancer. Even before Fred’s diagnosis, the Hollidays struggled to get an accurate explanation for Fred’s chest pain, time to ask questions of his oncologist and access to Fred’s electronic health information.
Regina did not want others to have the same experience so she began painting medical advocacy murals. One of those murals “73 Cents” in Washington, DC, was rededicated this past weekend.
Having a personal investment in a cause isn’t always enough to get it off the ground, but Regina has managed to do that. She has gotten 230 people to share their personal stories and have those stories painted on the backs of suit jackets in mural form. Gallery participants wear their jackets at meetings to help open a dialogue about the importance of Health IT and data access.
It’s not always easy to wear a jacket and commit to being the center of attention at a meeting, Regina says.
“It’s sad and it hurts,” she says of sharing a personal story, “and you connect with that inside of you.”
But as she points out making things personal can help spur activism, “You can always take a stance on your own life.”
I would like to share the stories of a few of the Walking Gallery members who have the courage to take a stance on their lives, beginning today with Fred Trotter. Trotter has a background in health IT and information security and trained at the Air Force Information Warfare Center. He’s done work in open source health IT including testifying for the Open Source community regarding the definition of Meaningful Use. He also wrote a book for O’Reilly Media called “Hacking Healthcare.”
1. How did you meet Regina and how did you learn about her projects?
I met her very early, at the very first government meeting she decided to attend. Jen McCabe is a mutual friend so I have known about the project from very early on. I was fairly late in getting my jacket(s), because I did not want to impose too much on Regina. Once I understood that my reluctance annoyed Regina, we quickly collaborated on the first interactive jacket in the Walking Gallery.
Since then I have been speaking more and more on the notion of “Hacking Healthcare.” I believe that the act of hacking is the refusal to accept the ethics embedded in some complex system, but creating workarounds that enable ethical interactions with that system. Richard Sachs created the concept of “world upside down icon” to represent the work that I do as a healthcare software programmer and healthcare hacker. The moment he explained his concept I asked him to make a new jacket with the icon.
That icon has since become our corporate logo. Its on the Not Only Dev website, on our business cards and is pretty much the core of our branding strategy. So we owe a lot to Regina for the Walking Gallery concept and to Richard for developing our logo.
2. Did you have any thought or opinions about the Walking Gallery project before you took part in it? Were your opinions right or did you change them?
I have been peripherally involved with the creation of the Walking Gallery since its inception, so it is difficult to imagine a “before” and “after.” It has just become a more and more crystallized form of art activism in healthcare. I am really excited to see it expanding to a movement within the healthcare system.
I always correct someone who calls the jackets the “Regina Jackets.” Regina has been steadfast in encouraging other artists to participate, which is really important as the Walking Gallery scales. We need to have hundreds of artists and tens or hundreds of jackets.
3. Why did you decide to become involved in the Walking Gallery?
I would hesitate to call it a decision. I had made the decision, along time ago, to do what it takes to change healthcare. Working with Regina is like experiencing a force of nature, so asking how I decided to become involved with Regina’s work is like asking how you get involved in a rainstorm. I was just in the way.
Its an icon of an upside down world.
It creates a tremendous opportunity to have a discussion about the healthcare system as a whole. Some people ask “Why do you have an upside down world on your back?” I usually reply, “Is it upside down?” I want people to reframe their assumptions about the healthcare system and realize the up and down when looking at a map is just perspective. [That idea] is really useful for starting the conversation.
But I also love the notion that my mission in healthcare is not to turn things upside down but to turn them right-side up.
The jacket is conversation starter, which is the whole point. The artwork creates a new moment, where two people engage in a different way. That is the power of art, and the reason we need to have a patient art activist movement including all of the art forms that people use to reject the negative parts of the healthcare system.
5. What was the most difficult thing about telling your story to someone and have them put those words into pictures?
The jacket that Regina did for me is really about my “story” and the jacket that Richard did for me is about my “mission.” In both cases it creates an opportunity to empathize and connect with people in a way that is very difficult.
6. What have you been most surprised about regarding the Walking Gallery?
I have been pleasantly surprised by the degree to which it is like the “Dog Park Club.” Generally, I find that anyone who is willing to take time from their day to do something that is primarily nice for their dog tend to be nice people. The community surrounding the Walking Gallery is similar. When I meet someone wearing a Walking Gallery jacket at a conference, I know that they are the kind of person who has gone to the trouble to engage with the artistic patient community. I may not agree with their insights or methods, but they always have a passion for change and for patients resonates with me.
7. How have people at meetings or other places you wear your jacket responded? Do they ask many questions about it? Does it open a dialogue?
It is probably the best conversation piece I have ever had.
8. What results do you hope will come out of the Walking Gallery?
I really want to emulate the tremendous success of the AIDS quilt movement. That movement allowed for patients, caregivers and friends to connect together around art at a massive scale, without losing individuality and personality.
But the jacket allows us as patients to go into the healthcare system and engage with the art. I wear the jacket not only to conferences but whenever I do onsite health IT consulting. The notion that I can “bring it in” to the healthcare system is a very powerful analogy to the way patients need to bring healing back into healthcare. It lets us say to doctors and hospitals “I am here, I am not following your rules or taking the role you have given me, but I am not a threat. I am not hear to hurt you.” This is a really powerful effect.
Jennifer Thew, RN, MSJ
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