Acting Like an Adult at a Juvenile Event

Last Saturday night, I had the pleasure of attending the Northeast Florida JDRF Gala with my husband and a few coworkers.

The company I work for was a sponsor for the event, so my steak, and my seat — and everyone’s booze — were free. (As thrilled as I’d be to see a cure for diabetes, I can’t afford to spend $350 on a night out — even for a good cause.)

It was one of my first up-close experiences with JDRF, and I feel like I spent the night trying to figure out just how to feel. I mean, it’s weird to get dressed up in Spanx and a cocktail dress just to spend the evening surrounded by wealthy folks who are all there to help fix The Thing That’s Wrong With You. And that night, there was no getting away from The Thing That’s Wrong With Me.

Dinner began with a short video about “Juvenile” diabetes (The term “Type 1″ was scarcely used during the evening’s presentation). Several children — including the super-cute and eloquent 10-year-old honoree, Aria Todd — talked about their experiences with diabetes, and why they want a cure. There was even a moment dedicated to two or three adults who’d been living with Type 1 for decades.

But for the most part, the evening was dedicated to the juveniles with Juvenile Diabetes — and they were everywhere. I saw preteen boys with pumps and test kits hanging from their belts, little girls whose outfits included long velvet dresses, perfectly curled hair, and hot pink infusion sets stuck to their upper arms. The 12-year-old diabetes camper in me wanted to run up to each and every kid and ask them about their meters, or their pumps, or which fingers they use for blood sugar checks. But I’m 32, and they were all under 16, and nobody wants to be the weird old diabetic lady who’s way too interested in children. I’d never been surrounded by so many PWDs that I felt like I couldn’t talk to.

As the night continued, I started to feel more and more of the JDRF alienation that I’ve heard so many adults with Type 1 talk about. At one point, after four or five different children had been humiliated brought out to model auction items, I turned to my husband: “What are they going to do for these kids when they grow up?”

I don’t want to sound bitter here; I know it’s not all about me. I also know that part of running an effective fundraiser is demonstrating a need — and that that involves showing potential donors the profiles of children who might potentially go blind, who may have kidney issues, who don’t like having to treat a low in the middle of recess. But I’d like to think that I might have helped motivate the most deep-pocketed in the audience if I’d climbed up on stage in a free-beer-induced advocacy frenzy and wrestled the microphone away from the emcee.

“You think this is tragic, wealthy philanthropists?” I would have begun. “Are you getting all misty eyed thinking about little Aria clipping her Animas pump to her tutu? What are you going to do for her when she graduates from college and has to take a job she hates just so she can have health insurance? Or if she can’t find health insurance at all? How endearing will it be when this kid over here doesn’t want to get his own apartment because he’s afraid of being alone during a severe insulin reaction? You think it’s scary being diabetic when you’re a little kid? Try being diabetic when you’re all on your own.”

Then I would have quietly handed the microphone back to the former local news anchor who was hosting the event, and as I made my way back to my half-eaten filet mignon, a slow applause would begin, gathering in strength and volume until a man in the crowd leaped to his feet, checkbook in hand, and donated a bazillion million dollars to the cause, renewable each year until a cure is found.

Of course, none of that happened. The Northeast Florida JDRF did raise what looked to me like a ton of money in silent and live auctions, and the younger diabetic kids danced to the disco band like their little lives depended on it. Dinner was delicious, and a good time was had by all — even those of us who had to try to enjoy the cheesecake dessert while watching a list of diabetes complications scroll on a pair of giant projection screens. (I will say that it’s strange to sit through such a somber presentation and then watch the crowd so easily transition into busting a move to Disco Inferno.)

I know the JDRF is trying to do more to reach out to adults with Type 1 diabetes — starting with the Type 1 toolkit they introduced earlier this year. But I couldn’t help thinking of the galas that might come 15, 20, and 30 years later — when the kids dancing in front of me would be trying to start families, or land a job, or deal with the onset of complications. They’d all be at home, and a fresh crop of newly diagnosed children would be there to take their places. I wanted to scoop all of them up and protect them from all the dumb diabetes things. I wanted all of us to get on a private chartered plane and fly to a place where diabetes doesn’t exist.

And as I teetered out of the disco-themed ballroom in my heels, I wished desperately for all of my adult friends in the DOC. It surprised me how much I missed so many people I’d never met in real life. And it struck me as such a shame that none of us Type 1s — not even the bounciest kids on the dance floor — will get to stay young, but the way things are now, we’ll all have to stay diabetic.

18 comments on “Acting Like an Adult at a Juvenile Event

  1. Abbey says:

    I’m glad you posted this because I’m going to a JDRF Gala event here in Chicago in December and I would not have been prepared for this. This makes me sad, but I guess when you are in fundraising, kids bring in the money more than us 30 somethings. I dunno, it sucks all around.

  2. Seriously, Jacquie – great post. I’ve gone to my local Indy gala a couple years thanks to my employer, which is awesome to help a poor married guy out when he can’t afford to dole out $250 (no – $500, for the wife, too). I had the same feelings and thoughts and missed the DOC while there. Telling you… It all comes down to #dprom. A fundraising and fun extravanganza.

  3. Khürt says:

    Ah the JDRF gala! I know the intent is to find a cure for the millions of juveniles living with Type 1 diabetes but what about the tens or millions of adults? My feelings don’t prevent me from raising funds for the JDRF though.

  4. Kathy says:

    I am nodding my head in agreement, especially the part about missing people you’ve never met.

    Going to a JDRF event here in south Florida tomorrow night myself. I’m hoping against hope they won’t pimp out the kids (it’s supposed to be a wine & cheese thing), but we’ll see.

  5. Shannon says:

    If I had been there to witness your free-beer-induced advocacy, I would have been there, slow applauding my heart out. http://www.youtube.com/watch?v=QhTiJEYqqY8

  6. Sysy Morales says:

    This was really well written. I must say…my worst diabetes management era was right after graduating high school. I also succumbed to worry because suddenly I was in college, thinking about how soon I’d be off of my parent’s insurance. I also hated all of my classes-I was majoring in science so that I could get a well paying job, just for my diabetes! (Eventually switched majors). I also was on my own so much more and had a heck of a time adjusting to all of the extra responsibilities that I was receiving. Some support at that time would have been much appreciated. …I’d still appreciate it even now. Great post!

  7. Lisa says:

    So well put, Jacquie. You really put words to the way that a lot of us feel about the JDRF seeming to only champion those Type 1′s of the younger persuasion. I know it’s important to think about the children affected with this disease, but what about the grown-ups? You don’t grow out of this thing! Thanks for posting this.

  8. April says:

    I’m so glad to hear another “Juvenile” story. On Sunday I participated in the local JDRF walk and part of the tradition here is lining up the Type 1s on the stage and having them introduce themselves. I was standing with my boyfriend as all these kids climbed onstage. He was looking at me like, “Aren’t you going to go up there?” And I was stunned. I couldn’t go up there, I’m pretty sure I was too old. It’s weird to me how, even at an event aimed towards Type 1, you can feel so out of place.

    Great post Jacquie, as always!

  9. Auntly H says:

    Ahh, yes. My constant dilemma when asked by my Grandma where she should give her diabetes donations. ADA feels more focused on Type 2 (except for my local Tour de Cure even). JDRF focuses so much attention on kids and I never was a CWD, nor am I a newly diagnosed adult w/T1 (the focus of the T1 Tool Kit). I have found a home with the DOC, but these primary organizations don’t feel like a great fit for my life or even my dreams for a cure. DRI might be where I point my loved ones. More research needed…

  10. Rachel says:

    Agree with what everyone has posted here. I know someone who works for the Alzheimer’s Association, and she said that fundraising is very difficult because it’s seen as an “old people’s” disease, so getting donations is quite a challenge.

    I would love to meet adults with T1! The DOC is all I have! :)

  11. Jerry says:

    Thanks for writing this.
    I was recently at a JDRF Technology Update. It was very informative, and I’m glad I went.
    The formal presentation was followed by a question and answer forum. The panel taking questions was one adult who had lived with diabetes for over 50 years, two parents, a pediatric endo, and a CDE, so it was very slanted toward parents of diabetic children.
    I’m a diabetic. My kids grown kids aren’t. I was invited to this event as a diabetic, not a parent.
    The CDE was the worst. She kept saying “your kiddos” this and “your kiddos” that. I wanted to jump up and ask, “Am I in the wrong place?”

  12. Layne says:

    Thankyouverymuch! This all drives me crazy and I also blogged about it recently! (http://laynenp.blogspot.com/2010/09/jdrf-advocacy-or-abandonment.html) Somehow it doesn’t feel like they are honoring these kids, just using them because their cuteness and innocence generates more dough than we adults would. I sometimes want to ask if they really actually care about Type 1 diabetes or if fundraising just makes their skirts fly up and the cause really doesn’t interest them?!?

    My favorite line of yours was: “I will say that it’s strange to sit through such a somber presentation and then watch the crowd so easily transition into busting a move to Disco Inferno.” Let me just add that juxtaposing DIABETES with the cheesecake desert and disco dancing seems to leave the seriousness of their cause right out in the dust. Maybe that’s just me?

  13. Mother of type 1 says:

    I really enjoyed this post. Be assured that those of us who do not have type 1 diabetes, but have children who do, are also somewhat uneasy with the heavy use of children in fundraising. I’m afraid that the “poster child” phenomenon comes dangerously close to making the illness the most important part of the child. And frankly, those press releases that talk about the straight A student athlete who does it all anyway (and raises money) despite type 1 diabetes really misinform the general public about how challenging it is to live with type 1 diabetes. At the same time, I am really grateful to the parents and children who are willing to go out there, be in the spotlight, and raise money.
    My 16 year old son guards his privacy, and has done so since his diagnosis at age 9. And my son and my husband both want to think about diabetes as little as possible, and as we all know, that is still a lot of thinking about diabetes! We don’t fundraise but appreciete the efforts of those who do.

  14. I’m sorry the event wasn’t a moving experience for you. I know if the event made you feel more included, it would have gave you energy and made you feel really good. At least that’s why I go to Type 1 events (as a mother of a 4 year old with Type 1 diabetes) I don’t personally have a problem with the JDRF using kids to raise money…as long as they have diabetes it’s appropriate…those who have diabetes and those who care for people with diabetes know that the cute smiles and positive outlook is a young person at that moment at their best with that beastly disease. All those kids deserve to feel special for a few hours at an event that they believe is especially for them! But so do adults with Type 1. The problem I think is that (as you and others explained) once you become an “adult” the world just expects you to take care of yourself and carry on in big people world. I get a glimps of what my daughters future may hold through the blogs of adults with Type 1. So to me you all are EXTREAMLY important individuals with voices that share your stories. I’m thankful for the insight and think constantly about what it is I can do or say to her over the next two decades that will help her cope with her disease as an adult…I guess my wish after reading your post a couple of times would be for all you adult PWD get loud and get proud…create a movement to represent the adults so my daughter will have a “place” or an “event” to transition to when she is an adult. This is of course from a D-mom who sat her 4 year old cutie on the side of the road at a lemonade stand to raise money for the JDRF…the sign was huge and said quite clearly the money was for the JDRF (spelled out even)and for a CURE. I was applaud at how many people actually pulled up and gave her money and seriously didn’t have a clue what she was standing there passing out lemonade for??? The comments were mostly what a cute way to earn money. Kids work regardless of the cause…That is good sometimes, but quite empty sometimes too. I hope for a cure for all indivduals with Type 1, it sucks no matter what your age and I hope you know that “we” do know that. ((hugs))

  15. Steph says:

    I hear your frustration! For me, being diagnosed as an adult, I feel I have to do this all on my own. I know that really isn’t true – thank goodness to family, friends and the DOC, but it sure can feel that way sometimes!

  16. Lindsay says:

    Great post! Your imaginary free-beer-induced advocacy rant had me laughing out loud. Love it!

  17. diabetesbff says:

    My father and I attended the JDRF Gala/Ball in Milwaukee and of course, sick kids garner more sympathy than adults. I’ve written often about how we forget that those cute little kids with “juvenile” diabetes grow up to face even more challenges as adult “juvenile” diabetics.

    If leveraging the wee ones with type 1 helps secure some funds toward a cure or diabetes awareness then I understand it, but I still find it frustrating that the focus is always on using children with diabetes as manipulative tools for funding.

  18. Alison says:

    For those of you who feel out of place at JDRF Walks and Galas, I encourage you to check out the ride program: ride.jdrf.org. I know that the fundraising minimum can seem scary, but as someone who has now done two rides (thanks to the support of lots of donors with a little $$ to give!) it’s not impossible. The ride weekends have been beyond words inspirational. There are usually a good number of adult T1 riders and it’s a fun way to meet other PWDs from across the country. Don’t be intimidtaed by the cycling either, every ride location has a range of distances to choose from.

    I have to say that as a JDRF supporter it is frustrating for me when adults criticize the efforts of JDRF becaues they are focused on the kids. In my opinion, they are and they aren’t. JDRF was founded by parents of type 1 kids so that is part of the reason that the organization is kid-centered. That said, JDRF is funding research in so many areas that help improve our day to day lives and in that way they are always doing something for all of us. Finally, when a cure is found it will benefit all of us and at that point will it really matter what diabetic stories moved the donors to give??

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