I love advocacy. I love the little and the big things related to it. It’s what actually makes me feel better about my Type 1 Diabetes more than anything else.
There’s always a need for advocacy, ranging from policies in government to education. I found the need for diabetes advocacy was high for me in K-12. You’re spending 6-8 hours, 5 days per week, 9 months out of the year in school. (This doesn’t even take into account when you are involved in any extracurricular activities.)
You don’t “grow out of diabetes.” Things come up at every level of education. I’m grateful for the fact that my family and diabetes care team included me in all advocacy while I was growing up, increasing my involvement over the years. Advocacy is now a part of my soul, as I was able to practice and develop my skills and methods while growing up.
When I was diagnosed with Type 1 Diabetes at the age of 7, I was the only one in my school and we didn’t have a school nurse. By second grade, we had a school nurse and developed a relationship with the head school nurse of our county. Every time I went to a new school, we advocated to get nutrition information and meal schedules so we could carb count in advance (some years were easier than others). We were always advocating to make sure I could participate in activities and that our voices were heard. At 13, we learned about the 504 plan and advocated to utilize that.
In high school, I had to fight to be able to carry my medical supplies and to be able to take care of my own diabetes. They didn’t even want me to carry low supplies on me!
We won the medical supplies battle, but there wasn’t a great location to store extra supplies if needed. During my sophomore year, we advocated and used our connection with the head nurse of our county to have a place to store all medical supplies (not just diabetes). And we also earned a part time nurse.
But I had a fear that the the moment I graduated, everything we had worked on would be gone. The proud, relentless, persistent, and (happily annoying) squeaky wheel would now be out of their hair.
Being Part of the Change
Right after graduation, I met with the superintendent of our schools to talk about my concerns. He was impressed that I came even though I wouldn’t be there anymore. He said he would follow-up and check-in on policies for schools in our county. Policies have been made, but I still check-in even 5 years later. Advocacy sometimes means that it may not benefit me, but it will benefit someone else in my community.
If there’s a problem or something comes up that impacts not just yourself, but others with or impacted by diabetes, you can do something about it. Even if you think it only impacts you, still go for it. Most likely, there’s someone else who’s impacted too. Here are my thoughts:
- Educate, raise awareness, and bring attention to not just the issue, but diabetes as well. I find education and bringing attention to issues- including facts, solutions, and your stories- are very important. Less issues arise when people are fully educated. This also includes educating yourself and being what I call a “temporary expert.”
- Bring people together. There are powers in numbers. Most likely, you won’t be the only one. It might not even be specific to just diabetes.
- Ask for help from people in your life and experts. There are people who are willing to help you. It’s hard to do it alone.
- Be accountable. Making someone and yourself accountable is important. Even after someone agrees to change, you need to check-in on it to make sure it happens or doesn’t go away. You need to be involved and invested.
- Introduce yourself and stay in touch. It’s really helpful that people know you. I reach out and introduce myself to decision makers even if I don’t have something I want to change at that moment and stay in touch with people after change.
- Don’t give up. It takes time. Maybe you have to put it on hold for a moment. Maybe one person says no. You think you’re too young. You think you’re too old. Don’t give up. Great things take time.
- Use your strengths to your advantage. This includes your own story, which is the most powerful one you have to share. There are different tactics that work for everyone. You don’t have to be a lawyer, politician, or professional. Be you.
- Be the proud, relentless, persistent, and (happily annoying) squeaky wheel during the whole process. Sometimes you have to be, and that’s nothing to be ashamed of. You have the media, people who care, and other means to come to your aid if needed.
- Share your story. Share your story during and after the change. Put a face to it. It’s not just about facts and numbers, it’s about making it all work together. The ripple effect is magnificent!
Use your passion and experiences to guide the change and develop your skills along the way. Share your story.
Advocacy isn’t always big or small. It isn’t always a crowd. It isn’t being alone. It isn’t just about government and laws. It can be with insurance, medical companies, or your care team. It’s about the ground up and trickle down effect. It’s not always loud or in the media. It’s not always right now.
It’s change and so much more.
Mindy is the Program Assistant at the College Diabetes Network, CDN, in Boston, MA and is a former CDN Chapter Leader. She graduated Cum Laude from the University of Georgia with a Bachelor’s in Social Work and a minor in Sociology. She was diagnosed with Type 1 Diabetes on March 8, 2000 when she was 7, and she has been involved in the Diabetes Community and advocating since then. She thoroughly enjoys Diabetes Camp, travel, crafts, reading, and being awkward. You can check out her blog here and follow her on Twitter and Instagram at @mindy_bartleson and on Facebook at “There’s More to the Story.”