By: Kya Fawley
While the AIDS Quilt travels around the country, the Diabetes Memorial Quilt hangs in cyberspace. The quilt remembers all those who have died of diabetes.
Arlene Shapiro created the virtual memorial two years ago and put it on the World Wide Web for people to view and add names of their loved ones. DIABETES HEALTH spoke to Shapiro about her work on the quilt.
DIABETES HEALTH: Why did you decide to create the quilt?
Arlene Shapiro: The idea of a quilt to memorialize those who have died of a disease came from the AIDS project. The “deceased diabetics” and quilt ideas came together after the untimely deaths of 4-year-old Caleb Lemaster, and 20-year-old Sarah Jane McNicholas. Their deaths from diabetes inspired the addition of a virtual quilt to my Web site, members.tripod.com/~drarlenes/dmquilt.htm.
DI: What effect would you like the quilt to have on its viewers?
AS: Of course, the main purpose of the quilt is to provide a place for people to pay tribute to those who died from diabetes and its complications. But I hope that in some way the quilt also helps to raise awareness about the devastating nature of this disease. Unfortunately, too many people think of diabetes as a simple, little sugar problem.
DI: What reactions have you received from visitors?
AS: I receive many messages praising the quilt and thanking me for memorializing people I never knew.
DI: On the site you mention that diabetes is underreported on death certificates.
AS: While diabetes might not be cited as the cause of death on the death certificates of those listed on the quilt, each was diabetic and the disease in some way contributed to his or her death. I think it’s important that people understand this.
DI: How do you find out about all the people who have died from diabetes and how do you maintain the virtual quilt?
AS: Maintenance of the quilt page actually consists of adding names and other information, and checking the page with different browsers on three different computers from time to time. Most of the names are sent to me by email from people who have discovered the site.
Some of these emails include just names and dates, and perhaps the place of residence or birth. Others contain heartbreaking stories about their deceased relatives and friends. I wish I could include these poignant tributes on the quilt but I have to limit the amount of information. I do answer each email personally.
DI: What is your motivation for this work?
AS: I am a type 1 diabetic (an insulin pumper) and on a personal level, I certainly know what having diabetes entails and how serious diabetes really is. The names on the quilt represent such a small percentage of the people who have died from a disease that should have been cured long ago. The sad part is that many more names will be added here until we do find that cure.
To add a name to the Diabetes Memorial Quilt email Arlene Shapiro at firstname.lastname@example.org.