Part 2 in a series. Read Part 1: Brick Walls Are No Match For Regina Holliday’s Medical Advocacy
“Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying, ‘I will try again tomorrow.’”
― Mary Anne Radmacher
Think about the last time you saw, heard or experienced something that made you think, “That’s not right. Somebody should do something about that.”
After you had that thought what did you do? Did you ask yourself who ‘somebody’ was? Did you decide ‘somebody’ was you? Or was ‘somebody’ somebody else?
Regina Holliday is somebody.
In January 2009, Regina’s husband, Fred Holliday, sought treatment for chest pain. In March of that year, he was diagnosed with metastatic kidney cancer. In the months leading up to Fred’s death on June 17, 2009, the Hollidays experienced misdiagnosis, miscommunication, medical errors and barriers to data access. You can read a more about their experience here: Brick Walls Are No Match For Regina Holliday’s Medical Advocacy.
In other words, (well, mine) their experience with the U.S. health care system was bad. Very, very bad. Unfortunately, I’ve known other people who have also had poor health care experiences. For the most part, they talk about experience with friends and family and that’s where it ends. They feel overwhelmed by everything and think they’re just Average Joes and Janes who can’t make a difference.
But Regina is different. She felt she could make a difference and effect change so other patients and families didn’t have to endure a similar, terrible health care experience.
“I asked myself, ‘How can we get attention rapidly?’” she says. “I thought, ‘Big Murals. I’m sure to get people’s attention that way.’”
And so she painted two medical advocacy murals—“Medical Facts” at Pumpernickel’s Delicatessen in Washington D.C., and “73 Cents” at a gas station near her D.C. apartment.
These murals led to the Walking Gallery movement. Walking Gallery participants wear suit jackets with personal patient narratives painted on their backs. They wear the jackets to health care conferences to help create a dialogue about patients’ rights.
“They wear their stories on their backs,” Regina says of the Walking Gallery members. “It’s deep and personal so it isn’t easy to walk away from them when they tell people about their jackets.”
The Walking Gallery has been such a success that there are now over 230 jackets in the gallery. On June 2, 2013, members of the gallery will meet for The Walking Gallery 3. This is the third gathering of gallery members since the project began. The event will be held from 7-9 p.m. at St. Paul’s Lutheran Church in Washington DC. Those attending the event will walk from the church to Regina’s “73 Cents” mural for a re-dedication ceremony.
Regina is hoping to have over 100 gallery members and additional guests. If you would like to attend you can register here: http://thewalkinggallery3.eventbrite.com/#
The two days following the event, June 3 and 4, The Walking Gallery will gather on the Rock Creek Park walking trail by the Omni Shoreham Hotel for scheduled networking walks during the Health Data Consortium’s Health Datapalooza event.
Regina helped organize the gathering, called Everybody Walks, because tickets to this year’s Health Datapalooza event were unaffordable for many patients and professionals. However, last week a limited number of spaces in the consortium’s Consumer Circle became available. Meeting registration fees are waived for Consumer Circle participants in events and related networking activities. Apply to be part of the Consumer Circle.
The walks, which Regina says are “kind of like speed dating,” pair patients, physicians, government employees, IT professionals, vendors, nurses and others to walk and talk about the action needed to make positive changes to health care. Health Datapalooza attendees are encouraged to stop by the trail during a break and go for a walk
The goal of the campaign is to spread the word about and grow The Walking Gallery movement. By creating a short documentary that includes a how-to-guide for artists and walkers who would like to join the Walking Gallery, Regina hopes to raise awareness about the movement. $10,000 is needed to launch the film project. As of May 18, 2013, $1,945 has been raised. Donate Here.
So you can see that Regina took and has continued action since Fred’s death in 2009. When we were talking for this piece, I shared with her that I had seen many people endure bad health care experiences, but the majority of them don’t speak up or become activists. I asked her why she thought this was.
“A lot of people think they’ll look silly,” she told me. “And we live in a society that often doesn’t speak up.”
In the third and final post of the series, you’ll hear from others who have had the courage to speak up by participating in the Walking Gallery.
Jennifer Thew, RN, MSJ
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