Seven days ago marked the start of the annual diabetes awareness month. The 18th diabetes awareness month I have experienced since my diagnosis. Over the past 18 (nearly 19) years, I have seen some remarkable changes in diabetes management: newer insulins, an increase in insulin pump use, an astonishing variety of drugs to help those with type 2 manage their diabetes, a rejection of the old “sugar is poison” attitude and an acceptance of carbohydrate counting and moderation, meters that are smaller, take less blood, and are far more user-friendly than the ones that came before. Yet, despite these advances, the incidence and prevalence of diabetes continues to increase, not just in the US, but around the world. People with diabetes still face a lifetime managing a disease which is more intrusive and burdensome than almost any other disease out there. It disables and kills more people than AIDS or breast cancer. And it is expensive. And, because the incidence of it is growing, we who have this disease are the backbone of a multibillion dollar industry which I have known people to refer to as “diabusiness”.
Recently, AmyT of Diabetes Mine has written two pieces (HERE and HERE) calling on the Diabetes Online Community (DOC) to support a petition to encourage the three largest US diabetes organizations, the American Diabetes Association, the Juvenile Diabetes Research Foundation, and the American Association of Diabetes Educators to support the International Diabetes Foundation's Blue Circle “Unite for Diabetes”/World Diabetes Day campaign. She, like many others, laments the lack of a universally recognized symbol, such as pink for breast cancer and red ribbons for AIDS. Regardless of what organization an individual might represent, wearing a red or pink ribbon was enough to mark you as a supporter of those who suffered from those diseases. Pin that pink ribbon to your lapel and people instantly knew you supported breast cancer awareness, education, and research. Yet, there is nothing out there that says, universally, that the individual wearing that piece supports diabetes awareness, education, and research. Sadly, I have to agree with that sentiment.
What so many in the current incarnation of the DOC fail to realize is that around Christmas time 15 years ago, a group of people who were among the earliest DOC “pioneers” were also becoming angry at the lack of a symbol. For 5 years, red ribbons for AIDS research and awareness were everywhere on TV and pink ribbons had become the de rigueur accessory for most any socially-aware woman. Pink and red were nearly everywhere, yet there was no symbol that expressed support for one of the most prevalent chronic illnesses out there. To put it simply, we were angry. It seemed that neither the ADA nor the JDF/JDFI were interested in promoting a ribbon that every organization could use. So, being the good activists we were, we took matters into our own hands.
I won’t go into the details of our discussions here. Suffice it to say that they were long, contentious, and full of obstacles. We wanted something unique, we wanted a color that was not being used, we wanted something that said quite clearly, DIABETES. Those discussions are fairly well-documented and I recommend reading some of the discussions HERE and HERE. Believe it or not, we thought of blue, we thought of green, we thought of a number of different colors. Eventually, we settled on gray with a red gem in the center. As far as we could tell, no one else was using gray (exceedingly neutral color that it is) and no one else had attempted to put anything else on the ribbon. All other awareness ribbons up to that time were simply a folded piece of solid colored ribbon with a pin to hold the ribbon in place. Eventually, we also decided that gray was apropos: Gray, yes, is dismal, but the statistics regarding diabetes ARE dismal. We felt that with education, motivation, and activation, we could polish that gray into the silver (silver is polished gray) lining of hope, of our reflected dreams of a cure for this insidious disease. Many people on the group made hundreds of ribbons, sent them to one of the members who was on the board of directors of JDF, who then took the ribbons to a meeting in Athens, Greece, dumped them out on the table, and forced the JDF to acknowledge that we, those of us touched by diabetes, wanted and needed a symbol. They adopted the ribbon for several years, selling them at events, giving them away to special volunteers, even convincing President Clinton to wear a gray ribbon while he signed a bill to help fund the fight against diabetes.
I know many of you currently active on the DOC believe the gray ribbon with a red dot to be depressing, ugly, boring, and gloomy and you want something brighter, cheerier. You want something that represents, to you, hope. I respect that and can understand that. Many of us were not entirely happy with the color of the ribbon either. I encourage you, though, to think about the following:
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The gray ribbon was started not by an organization, but by people who had diabetes. Unlike the symbols from the JDRF, the ADA, the AADE, and even the IDF, the gray ribbon was a grassroots, bottom up symbol. We came up with it because we wanted to express both our despair at the lack of a cure for this condition and our hope for a better future.
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Unlike the symbols from the large organizations, the gray ribbon was created to raise awareness and not to raise money to support groups that are supported by the large diabusinesses. JDF supported it for a while, and was allowed to use it as a fund raiser to support their research agenda, but that does not happen anymore. Today, it is primarily for individual use.
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Just because you support the gray ribbon does not mean you cannot support other symbols. I do support the blue circle. In fact, I do like it, though I fear that should it be embraced in the way Amy and others are advocating, I fear it could lead to “bluewashing”, similar to the pinkwashing and greenwashing that has happened with the breast cancer and environmental awareness movements. Because the IDF does work more closely with people with diabetes, and works with impoverished people in third world countries, I tend to support them more than I do the ADA, the JDRF, or the AADE. Still, they are a top-down organization who tend to look at those of us with diabetes as being helpless and dependent on the “professionals” to tell us how to live our lives, though they do not do as they tell us. They have no clue how their “little change to diet and exercise, plus some medication” truly impacts those of us with diabetes. It is paternalistic, it is inappropriate, and it is time that attitude was discarded. It is largely for that reason I do not whole-heartedly support the major organizations, including IDF, and any of their symbol programs. I prefer a symbol created by others who have a deep understanding of what we go through.
Still, the gray ribbon was never meant to be divisive. If, in the end, the blue circle becomes the universal symbol, associated with diabetes itself and not one major organization or company, I can and will accept that. Still, my heart will always belong to the little gray ribbon. I want my silver lining!
I do hope you take the time to read some of the posts from the original discussions about the ribbon and why we ended up choosing that color. Blue was, perhaps the second most popular color, especially for people who had diabetes since the days of urine testing. Blue was the color they hoped for!