Finding Your Voice Online.
Last Wednesday morning, Amy from DiabetesMine and I co-lead a focus group at the Friends for Life conference called "Finding Your Voice Online." The group consisted of a bunch of d-moms, d-dads, and some kids with diabetes who sat in on the session, not to mention some terrific diabetes bloggers (Heidi, Scott, Chris, and Bernard). And then there was Amy. And me. (And my enormous iced coffee - so necessary. Apologies to everyone who realized I was way over-caffeinated by the end of the presentation.)
Amy opened with an introduction to her blog and her work in the diabetes community, and I finished with my story of how I ended up immersed in the blogosphere. (Slides below.) We shared how we 'got started' with blogging, and what kind of opportunities have come as a result of our efforts.
I've spoken at different conferences before, but the Children With Diabetes conference is different. Its core audience isn't someone with a Pharma agenda or something to sell - the people who go to the Friends for Life conference are people with diabetes, and the people that love them. They're the people who are affected every day by diabetes, and if this conference had existed when I was growing up, I would have had a completely different perspective on my diabetes. The FFL audience cares not only about new research developments, but about the real life of a person with diabetes. Their kids are more than their disease, and I hope they found some comfort in seeing two adults who were more than their diabetes, too.
As I clicked through my personal slides, I talked about my life and my marriage and my stupid cat. And then I shared with them what I was most proud of: my daughter. "When I was first diagnosed, back in 1986, my doctors told us that my having children would be near impossible. But I am so proud to say that I proved that you can have a healthy baby, even if you have diabetes." And her little face, grinning out from the slidedeck, proved to me once again why people with diabetes need more exposure to others living with diabetes. It feels so empowering to know that you can do anything - have a child, drive a race car, fall in love, climb up Everest! - even if you are living with diabetes.
Bernard, Amy, Kerri, and Scotty J!!
The parents in the audience had a lot of questions, and many concerns were about online privacy. We talked about the decision to share or not share our child's name or photo with the online community. "For me, I decided that a few photos here and there were fine, but I wasn't comfortable subjecting my kid's name to Google just yet. I want her to make that decision for herself. But I'm like any other parent, and it's hard not to share my little kid with everyone!"
One parent talked about her decision to make a JDRF walk fundraiser video, and how she had mixed feelings about the level of exposure.
"I think that we're all safe in this diabetes community, but I need to remember that there aren't just people with diabetes who are reading my blog." I said. "Sure, the patient and medical community might be reading our posts and watching our videos, but there are also some completely random people who might be logging on. And while we're safe within the 'borders' of the diabetes blogosphere, the Internet as a whole isn't quite as safe."
Some parents had questions about starting their own blogs and getting involved with the diabetes blogosphere. Others had questions about how to raise the awareness of their existing online properties. Amy and I walked them through different resources for developing their online voice.
I have always been a huge supporter of the Children With Diabetes efforts, in particular the Friends for Life conference, and having the chance to speak at a focus group was more than an honor - it was like coming home. Thanks to Jeff and Laura for hosting us, and thanks to all of the discussion participants!