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  • Phyllis Kaplan/Dinobetic

My advocacy....

Updated: Jul 7, 2020

....might not be your advocacy, and that should be ok

...might not be your advocacy, but maybe we can we work on things together

...might not be your advocacy and we might not want to work together, and that should also be ok

If you need or want my help for your advocacy, I ask that you make it easy, as I probably don't have the same knowledge as you do, and appreciate examples of how to make an impact. I will let you know if I'm not able to help, and ask for your understanding if I do have to say no.

My advocacy career is almost as long as my diabetes career. I started self advocacy at the age of 13 when a gym teacher told me I couldn't wear my medic alert bracelet in class due to the no jewelry policy, and the bracelet was stolen from the gym locker room. From that point forward I made sure to stand up for what I believed in.

Facebook reminded me that 5 years ago today I was headed to Orlando to participate in the Diabetes Hands Foundation MasterLab advocacy conference as a guest of Medtronic Diabetes. To say the conference inspired me to take more action is putting it mildly. After 2 days of learning, engaging, and connecting, I hit the ground running and dove head first into the deep end of the diabetes online community.

I came home from the conference with the desire to to advocate for everything. However within a few months realized I couldn't. There was not enough time in the day to do all I wanted to do plus work so I scaled back. And that's when the nasty-grams came. People took time out of their busy days to ask me why I wasn't advocating for what they were advocating for; asking how I could live with myself for not taking on their topic; how could I be a T1D and not care about...and on and on.

At first I responded with kindness and explanations, and understanding - often stating that I understood the need to get more people involved and if they had a specific campaign I could help with, that I could help out short term, but needed to focus on the topics at the top of my list. Usually that worked well, though there were a number of times that didn't go over well and increased the nastiness. These types of interactions happened periodically over the last 5 years.

I truly love that people are so passionate about their advocacy. But what I love more is when a call to action is placed that it's made easy for those not as familiar with the topic to jump in and get the word out. Just a few specific tips, examples is usually all it takes. And I also love those that are ok with the response of "no" or "I can't help at this time."

Today. after a year hiatus, I'm dipping my toes back into the advocacy pool.

Some have warned that it's not a good time since everyone's on edge given all that's going on in the world and emotions are high. And yet here I am - dusting off my advocacy hat and getting back to it. Though not head first into the deep end. This time with baby steps and one foot at a time.

Am I open to helping? Yes. Might I say no? Yes. That doesn't mean I don't support you, or don't care about your work, it mostly probably means I don't have the capacity, but very well could in the future.

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