Art as Advocacy
On May 17, 2009 in the Washington Post Magazine Deneen L. Brown, in the article "Of Bricks and Beauty", wrote "...Murals have the same claim to your attention. They are telling you that although you may be pulled by your collar on your way to work, or stopped at the red light for longer than you need to be, or stressed by a spat with a friend, there is something bigger than the mundane...Murals vary in artistic quality and intent. But they all shout their belief that art should be writ large across our lives, not stuffed away in books and museums."
This is a wonderful article on why murals are important. They wake you up. They provide beauty in an often bleak urban environment. They are public and open and uncomprimising. "See me", they yell. "You cannot ignore or quiet me. You cannot pretend I do not exist."
This past week I began 73 cents at 5001 Connecticut Avenue. It is a tribute to my husband and to all of the other patients, caregivers and families who suffer in silence. I could not wait to paint Fred's face. He is on a wall now. He is there on Connecticut Avenue with me. His eyes are closed, and he is resting. His beautiful eyes will not open as he lost to me physically, but his spirit is there. I painted Issac older than he is, as Fred was most concerned that he "would not get to see him grow up." Issac plays with the blocks that spell EMR, ARRA and HITEC. He holds the letter "I" as this painting asks members of the public where they stand in the current debate. I am two-faced in the painting. I had two roles: wife and caregiver. My wife face is a mask covering my sorrow. My caregiver face clearly screams my despair and worry. The 73 cents at the bottom of the mural represent the cost per page for the medical record. At this point only 1/20 of the mural is done. It will cover the entire wall, approximately 20x50 feet. I will work on the painting throughout July and hope to be done by the end.
A few days ago I attended the Connect 2009 seminar. The conference was filled with goverment agencies, Health IT professionals, health adminstrators and health advocates. I had an opportunty to ask a patients rights question in front of the assembled. To paraphrase:
"On March 27th My husband was diagnosed with renal cell carcinoma. I began to use the internet to research the disease. Posted daily on facebook to ask for help from friends. Learned to twitter and contacted a renal cell expert in Boston. I used every technology at my disposal to help my husband. How are you addressing a patient/caregiver access to the EMR?"
My question received applause. The answer was basically that patient access is not part of the current agenda.
I am doing everything in my power to change that.
The Medical Facts mural is finished and on permanent display at Pumpernickels Deli on Connecticut Avenue.