As I told you, my World Diabetes Day festivities started a day early, last Friday at the Jefferson Diabetes Health Fair. The Jefferson fair was relatively small, with tables set up in the lobby of a medical office building. They offered blood sugar and blood pressure screenings, there was a representative from a company that sells “diabetic” socks and shoes, representatives from the Internal Medicine department, some health educators talking about nutrition, and even a psychologist from a local mental health agency sharing information about mental health and chronic illness. I didn’t have much opportunity to chat with many of the other participants because a few too many attendees thought my art supplies were goodies I was giving away, so I was afraid to wander too far and return to an empty table. A few of the other table-tenders made their way to my table though, so I did my socially awkward version of networking. Considering it was a small, first time effort to coordinate a WDD event for Jefferson Hospital, I thought it went pretty well. Participation wasn’t great, but it wasn’t terrible either, and even though not so many people were willing or able to add to the mural, many were interested in the information I offered. Overall, I was pleased with how it went.
Unfortunately, I was less pleased with how the Temple event on Saturday went, mostly because the location of my table meant almost no contact with my intended audience – people with diabetes. This year, they had what they called “The Kid Zone”, which was a huge room with me, Dorkabetic Hannah wo-manning the Internet Resources table, a registered dietitian next to us, and then a bunch of activities for kids – hippity hops, a craft table, a bowling game, a basketball game, that sort of stuff.
They also had a Wii station for kids to do Wii Sports, and they were raffling off a Wii and Wii Fit. There was also supposed to be a fitness demonstration by one of the 76er’s, but he never showed up. Had it not been for the raffle and the failed appearance of the basketball player, I imagine there might not have been a single kid there. However, even with that lure, there probably weren’t more than 10 or 12 kids the whole day, and as soon as it was clear there would be no fitness demo, and the Wii went to its winner, the room cleared. Of the few kids there, one was the child of one of the podiatrists, most were the children of adults who had come to get themselves screened. The only kid who actually had diabetes was a 2-year old, who was really too young to participate in the art therapy task as I designed it. Other than that little boy, anyone who actually had diabetes or would be considered at-risk for developing it never came into the room because it didn’t look like anything more than a playroom, and I functioned as nothing more than a babysitter for an arts & crafts table.
As cranky as I was about how the location completely negated my purpose and intent, I felt even worse for Hannah. At least the activity I offered was appealing to kids, even if the informational handouts on art therapy and mental health were irrelevant and went completely untouched. There was no reason for Hannah to be stuck in The Kid Zone. I think the majority of people who attended the event and would have benefitted from all the information she had obviously spent so much time organizing, never knew she was in there so they never got the information.
On a completely selfish note though, I was grateful Hannah was there next to me. I’d only met her in person once, and hadn’t really had a lot of time to talk to her then, so it was cool to hang out with her and commiserate about feeling like we had been banished to the proverbial kids’ table. She also brought her husband, Matt, so I got to meet him. Towards the end of the event, Kelly appeared offering mini-cupcakes made with Splenda that she had swiped for us from another table that were pretty good. I think between the three of us, we made almost as many of the art therapy projects as the handful of kids that participated – which was fun for us, but bummed me out since that should have been the gravy instead of the main course.
While the location of our tables contributed to low turnout, that wasn’t the sole cause. Since it was the first year they tried to offer programming for kids, there was the obvious problem of marketing the event to families with children so there would actually be kids there. About a month ago, I contacted a social worker at Children’s Hospital of Philadelphia Diabetes Center to tell her about the art therapy groups I’m doing. While writing to her about that, it occurred to me that I should tell her about the Philadelphia WDD event, and see if they might be willing to promote it to their patients. The response I got?
“I doubt that we’ll be involved–it [sic] hard for us to keep up with all the education of our current kids with diabetes. I’m thinking that the American Diabetes Association would be involved.”
Basically, they couldn’t be bothered and wanted to pass the buck to the ADA. I totally fail to see how skipping it simply because that’s the more convenient option is doing any kind of favor to their patients and families. It would be super convenient for me to not have to lug around a suitcase full of extra diabetes supplies, or for me to get showered and dressed in the morning without having to wait out a hypo-induced sweat bath, but that’s not a luxury afforded to me. I don’t think passing on a world-wide diabetes awareness day should be a luxury they get either. As with most endocrinology specialty departments, there might be a handful of staff that actually has diabetes, but I’d guess that most of the staff don’t. So to them diabetes is just a 9-to-5-Monday-through-Friday-except-for-holidays-until-retirement-or-a-better-job-offer kind of position. I suppose, from that standpoint, why bother with making World Diabetes Day something about which patients could at least be informed? So what do I really think? I think they should be ashamed of themselves.
Matt (the podiatry student), Me, Dr. Zinzser, Hannah
Feeling rather insulted and not just a little disappointed by that response, I went to the other rather obvious source of children and families with a vested interest in diabetes, JDRF. I emailed my local chapter, the JDRF South Jersey Chapter, with whom I used to be involved so I have a pre-existing relationship with them. I hoped that because they know me, they’d at least take the time to write back to me. Don’t you know, I never got a response, although the executive director isn’t terribly responsive to anything that doesn’t come attached to a juicy check, so I wasn’t surprised, although it made me angry nonetheless.
I then made an effort to engage with the JDRF Eastern Pennsylvania Chapter. I called them a couple of times, and never got a return call. Granted, the first time I called, it was the week prior to their annual walk. I know that’s the most hectic time for them, so I figured that’s why they didn’t call me, and I waited a couple of weeks before trying again. I thought once the chaos of the walk passed, they’d be better able to have a discussion with me about how they could get involved in WDD. I left another message on their voicemail, inviting them to have a table at the event, and needless to say, still never heard a peep.
I know there are people who disagree with this sentiment, but from my informal interactions, it seems the general consensus is that once a type 1 child morphs into a type 1 adult, JDRF loses interest in us. It’s my understanding that they’re looking to change that perception with an impending campaign to engage adults with type 1. Now, I know they do a lot of great work and fund critical research. I also know each chapter is different, and I’ve heard lovely things about the chapters in other parts of the country, so I don’t mean to discount the good they do, but if they want to engage adults, the least the Philadelphia area chapters can do is respond when we call or email. That’s my two aggravated cents on that topic.
I think disgust best describes how I feel that the three primary local organizations for children with type 1 couldn’t be bothered to get involved with World Diabetes Day. Maybe I’m naïve to think that all diabetes organizations should set aside their territorial predilections so they can join forces to create more of an impact, at least on this one day. World Diabetes Day isn’t about raising funds, it’s about raising awareness, and the more people and the more organizations that get involved, the more effective WDD can be as a vehicle for educating people about diabetes.
I never checked out the rest of the WDD event so I have no idea what the level of attendance was or what else they had. I know there was a band because I heard it. I know the mayor of Philadelphia made an appearance, but we didn’t know he was there because we were isolated in The Kid Zone. I know the director of the pediatrics department of Temple Hospital was there, but as far as I know, he never came to The Kid Zone, which makes no sense. He’s someone with whom I would have liked to chat.
The whole thing put me in a sour mood because I felt discouraged, disappointed and disheartened. As I’ve said previously, last year there were some logistical issues that put a wrench in participation, and I had very high hopes that those issues would be resolved this time around. Instead, participation was worse, and being relegated to The Kid Zone made me feel like my contribution wasn’t valued. At least the event at Jefferson Hospital seemed generally worthwhile though. Plus, diabetes isn’t going anywhere, so there’s always next year if I decide to participate in the same capacity. Or maybe I’ll find some other way to celebrate World Diabetes Day. In the meantime, it’ll be another year of riding the BG wave, so I’ve got other things with which to concern myself for now.
By Me
By Hannah
By Me
By Kelly
The Philly D Girls
If you do, I’d love to see it! It will be like you were with me in spirit today!
