Monday, September 13, 2010

JDRF: Advocacy or Abandonment?

I read this guest post over at Kerri's blog today and it really got me fired up. I have so much to say on this topic. It's really bothered me for a while but I never really spoke out. Today that ends. I'm fired up, so it's on!

The post over on SUM is basically about how Type 1 diabetes is characterized as a child's disease. The face of the disease is a child's face. If you are a child with diabetes, for the most part, you are given pity, support, understanding, tolerance, etc. A slew of things that (for good or bad) seem to be reserved for children alone. Because as an adult with diabetes people seem to assume it's your fault. That you are too fat, eat too poorly or don't exercise enough and that if you took better care of yourself you probably wouldn't have diabetes anymore. For some (but not all) people with Type 2 diabetes this may be true. So as adults with Type 1 we are stuck in between two worlds that we don't fit into. And we are squarely unwelcome in both! We aren't cute, innocent, blameless children and we definitely aren't in the same boat with adult Type 2's. So where do we fit in?

The JDRF is supposed to be the organization that supports us. It's "the leading charitable funder and advocate of type 1 diabetes research worldwide," according to it's website. The "juvenile" in Juvenile Diabetes is really meant to describe the type (as in Type 1) not the fact that it's only for kids. Because guess what!?! I was diagnosed with "juvenile" diabetes when I was in elementary school. It's been almost 20 years and I'm no longer a child but I'm still diabetic! It's so frustrating to go from feeling like you had all this support as a kid but 20 years later no one cares anymore. And in some ways it's ironic because there are a whole slew of new issues to deal with as an adult (relationships, jobs, insurance, pregnancies, etc) that you still need support with and now. . . nothing!

Why did I become "unsupportable?" It's not like they never wanted me. I was a great sob story when I was 8 years old! But, for those of us lucky enough, we grew up! Which I would think is what all JDRF members and parents and advocates want! So why do they abandon us in their reach-out efforts? Do parents of children with Type 1 feel like we'll steal their kids' spotlight? Would they want the advocacy and reach-out efforts for their kid mercilessly dropped once they reach the age of 18?

I lied a little bit a few paragraphs ago. I said I never really spoke out about this issue but that's not entirely true. Last year, I posted about the guilt-trip letters I receive in the mail from the JDRF begging for money. The difference there was that I was just ranting angrily. I didn't really know why I was mad I just knew that I was! But the recent advocacy for adult Type 1's has made me realize what is needed for our community and why the letters, fundraising efforts and overall attitudes of those in the JDRF and the media and public in general make me crazy.

It's because they make me feel like I'm not worthy of a cure anymore. Or like I'm not worth supporting. Or advocating for. They make me feel like, now that I'm not a kid with a chronic illness anymore, my problems have gone away. But, in some ways, they are just starting as diabetics enter adulthood. I worry constantly about the financial strain that my disease would take on my family if I ever lost my insurance or if Brad or I ever lost our jobs. I worry about my unborn baby and the impact that every bloodsugar has on her health. There are all new considerations for adults with this disease and everyone of us with it (adults, kids, Type 1's, and Type 2's alike), we all deserve a cure. And we all deserve for the whole truth to be out there. At the very least, we deserve a realistic view of diabetes from our own advocacy group! And this is where JDRF has dropped the ball.

Those ridiculous letters that they send out begging. . . sorry, campaigning for money just turn me off. The are so overdramatic and sensational that I can't help but get annoyed. As a kid, I didn't really like them because I felt like they begged for people's pity. I didn't want anyone's pity, I just wanted a cure. As an adult, I feel like they isolate a huge part of the population who deals with this disease. Rather than focusing on diabetes as a disease that will follow us throughout our lives, it focuses on how sad it is that Tommy doesn't get to eat cake at his best friend's birthday party! Dude! That's the least of all of our worries!

This type of fundraising does nothing to raise awareness of the truths of diabetes. It has very little to do with me and my diabetes and what I go through on a day to day basis. It makes me feel like they are using the real kids with diabetes in the stories to gain sympathy and money and at the same time they are devaluing and dismissing the adults with Type 1 out there. And after reading them, I just get angry and disgusted and throw them away!

I feel like these letters have nothing to do with me and are trying to make me feel sorry for something that I experienced. Not only do I know what that kid went through (I was that kid!) but I know what every child with diabetes will go through. The JDRF, the media at large and the general public are not doing anyone any favors by only presenting half-truths. They aren't tugging on my heartstrings because I was the kid in those letters and never wanted the pity and sympathy that they are desperately trying to evoke. Plus, it's insulting and patronizing to send letters like that to ME, let alone to the general public!

I think Scott definitely has the right idea with his efforts to pull JDRF into the fold when it comes to raising awareness for and supporting adult issues with diabetes. I definitely will be following his efforts and giving all the support I can!

~Layne

9 comments:

  1. Layne: Thanks for posting this. I'm on the same page, as a former CWD Who Grew Up. We are all in this together, and what Scott is working on with the JDRF is being echoed in other areas, too. I find that encouraging. We're doing that here in Central Indiana, a group of us longtime Type 1s reaching out to our own and meeting up, advocating, and talking to both the JDRF and ADA on what WE want and need. We're stepping aside from the fundraising aspect of it, to just hit on the real relationships and advocacy about what our lives are like. The local JDRF has some great thoughts on this, and I'm excited to be a part of it. Hope it catches on nationally! Look forward to keeping in touch, and seeing you around the DOC on this!

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  2. Layne, I'd echo a lot of what Mike Hoskins said in his post above. JDRF is reaching out to build an inclusive community that can work together to find a cure as quickly as possible. I'm certainly open to talking with you in greater detail about your thoughts, concerns, criticisms just as I did with Scott. You can feel free to email me at advocacy@jdrf.org. Thanks for taking the time to write your post.

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  3. Fantastic post! I know exactly what you mean, only I didn't get the childhood diabetes experience as I was diagnosed at 18. I never felt like I was supported or a part of either group, even when I was diagnosed. Great Job!

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  4. On another note, while I completely agree with you regarding JDRF, I also feel that ADA is largely an organization that focuses on adults with Type 2 Diabetes.....another frustration...where do we fit in?

    Thanks for sharing your experience of JDRF as a kid, I've always felt "out of the loop" since I was 21 when I was diagnosed..I've never felt supported.

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  5. About a yer ago I had someone literally tell me that I could not have "junvenile diabetes" because I'm an adult. He honestly treid to convince me that I didn't have type 1. I explained that I got it as a kid, but have since grown up, and he finally realized that it doesn't magically disappear when you turn 18 (although wouldn't that be nice). Was so frustrating!

    I'm lucky to be a part of a local support group ACT1, which I'm blogged about here:

    http://sweetchild-of-mine.blogspot.com/2010/07/act1-blogging-and-my-13th-diaversary.html.

    I think groups like this are invaluable!

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  7. Ditto, ditto, ditto, and ditto. My thoughts exactly. I just volunteered at a JDRF event last night, and while it was friendly enough not ONE person even mentioned diabetes the whole night.

    (Just found your blog via Typical Type 1, BTW. Great read and congratulations on baby-to-be!)

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  8. Word up, woman.

    I went to a kick-off luncheon for a JDRF walk a few years ago, and I was so . . . grossed out by the presentation given by this 9-year-old's Mom that I ended up not even participating.

    It made me uncomfortable to see her blubbering about the fact that her son's life was ruined by diabetes, and how all he wanted from Santa was a cure.

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  9. Jacquie - YES! That is exactly the crap I'm talking about with JDRF. It's all a big, melodramatic sob-story with them and it makes me want to barf. And now I'm being melodramatic but I'm glad you see where I'm going with this! ;-)

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