As a Type 1 Diabetic, it can sometimes be super hard to advocate for yourself within school or work. Even more so when people simply do not understand how necessary it is to have our supplies on us is.
My Diagnoses:
I was diagnosed August 30th, 2016, my third day of 7th grade. Although I had seen how my brother manages his own Type 1 Diabetes, but since I am not in his class, nor the same age, I have not been able to see how he advocates for himself in school like situations. My mom was incredibly helpful in advocating for me. She emailed all of my teachers and the school so they would have a better understanding of what I would need in class and if my blood sugar went too low or too high. Even with that super helpful and educational email, some teachers and staff were confused or didn’t remember what I needed.
Technology/Supplies I had:
I was given a phone for my Dexcom to connect with, so being only 12 with an iPhone in class, teachers were not usually a fan of. I was not a bad student, I was only on my phone to check my sugars and to see how much insulin I may need to do. Also, when my mom would check in on me when she would see me go too low or high. I also had a Omnipod meter, which looks like a little black block, but I would do insulin through that, which needed to be on me at almost all times. Of course, I had snacks like juice boxes and peanut butter crackers in my bag as well.
Laws/Regulations:
For Americans living with T1D, there are several laws and regulations that easily allow us to advocate for ourselves. A few are the Americans with Disabilities Act, the Rehabilitation Act, The Individuals with Disabilities Education Act, and lastly, the Family and Medical Leave Act.
The ADA, under title 1, allows you to have extra breaks to eat, test blood sugar levels, or take medicine. under Section 504 within the Rehabilitation Act, it prohibits schools from treating kids with disabilities (which includes diabetes) unfairly. So, that gives the right to students with diabetes, like me, to still participate with the need of being safe. This would include having snacks when low, doing insulin when high. Checking your blood sugar on your phone in class. Those things keep us safe. Stand your ground and be aware that you can do what you need in order to stay safe. The Rehabilitation Act applies to public, private, and religious schools. The ADA only applies to public or private, religious is not included.
The IDEA is a little more targeted for people who have a disability that affects their learning; however, some can use IDEA for diabetes alone. IDEA gives federal money to schools for specialized education. If granted, you or your child would be given an Individualized Education Program (IEP). The FMLA requires employers to give employees up to 12 weeks of leave (without pay) due to health condition per year. So, if your child or you are hospitalized due to diabetes, you cannot be let go, however, you will not be paid.
Advocacy in Work:
The ADA also applies to your workplace. Breakthrough T1D explains that “Employers cannot fail to hire or promote you because of your diabetes, nor can they terminate you because of it. Also, they must provide reasonable accommodations like small breaks to check and manage your blood sugar, places to keep insulin or food nearby. Access to technology like your meter/insulin pump. As well as leaves of absence if due to diabetic/medical issues. They also are not able to discriminate with regard to employer-provided health insurance.
How to Spread Awareness:
If a medical emergency were to happen, then having someone knowledgeable about it could very much save your life. Make sure you have your glucagon, insulin and low snacks. As I have always done, I explain that I have a CGM (continuous glucose monitor), so I am able to monitor my sugars. If they hear beeping, usually that means I need to go take care of it, whether it is to go do insulin, or have high carb/sugar snacks. I also tell them the signs of what a low can look like compared to a high. For example, I go super pale, have slurred speech, and get out of focus when I am low. When I am high, I also get spacey, but I feel sick and drinks lots of water. If they see me doing this, some will check to see if I need anything.
How I have Advocated for Myself in Work:
I have worked a few different jobs, but I will share my restaurant work and my coaching work examples. As you guys can probably tell, those jobs are pretty physically demanding. In my restaurant job, I was usually food running. You know those big ol’ trays with 5-6 plates on them? I would carry and deliver about 200 of those per shift. And because of this, my blood sugar would go low every once in a while. Since my employer knew about it, I would just have my water and sweet tea or lemonade near, so I could catch it before I went too low. As a coach, usually it was just me and 10-15 little ones in a gym, with a teacher or assistant nearby. So, before each session or class, I would make sure my blood sugar was good (between 120-160). In the times I would go low, I had juice boxes I would drink while coaching. I would make the kids do an activity while I supervised from the side.
Trouble I Have Had in School:
One time I remember when having difficulty with a teacher, was my sophomore year (2nd year in high school). We had state exams where no phones were allowed or snacks. This, as you know, is very problematic for a diabetic. My CGM was Bluetooth to my phone and snacks were, well my low blood sugar life saver. I had gone to the teacher, explaining why I need my phone on my desk and a juice and crackers on me as well. She was incredibly hesitant even after I showed her my Dexcom that was on my arm. I do understand, she feared for her job, but this could lead me to fear for my life. Other students who were in the class understood my need and tried to explain to her as well. We finally concluded that my phone would be on her desk, I would go check it in front of her (fair but annoying). My snacks could stay with me, thankfully. I am thankful that I can feel when I am dropping, low, or high (for the most part), so I was able to catch when I was going low during the test.
Thanks!
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Peace
Gracie
https://diabetes.org/advocacy/safe-at-school-state-laws/rights-and-responsibilities
