I was diagnosed with type 1 diabetes when I was eleven years old. At 11 years old, I learned that without access to insulin or sugar, I could die within hours. For some people, that might not be such a struggle to say. But I have never been some people.
I had an accident in sixth grade because I was afraid to raise my hand and ask the teacher to leave the class to go to the bathroom. I was afraid to even slip out of the classroom as I approached the brink of my bladder control. Instead, I held it…. until I couldn’t anymore. It was the height of my middle school shame.Sixth Grade
I have always been the little girl with no voice, the person with no personality, the child afraid to ask for a bathroom break, the wallflower. I may have continued down that path if it weren’t for my t1d (type 1 diabetes) diagnosis.
After my diagnosis, I had to carry around this weird pack of things to stay alive. I had to keep a vial of insulin, a vial of glucagon, a lot of sugary snacks, and protein based snacks. I had to keep syringes and a blood sugar meter to poke my finger. I was suppose to check my blood sugar every time I ate, two hours later when the insulin kicked in, and any time I felt funny. It averaged 4-12 times a day. If I didn’t have insulin, I risked really high blood sugars that would kill off my organs by slowly poisoning my body. If I didn’t have food easily accessible, I could (and did) drop to dangerous levels that would bring me to the brink of losing consciousness.
So what does this have to do with advocacy?
Well, it’s where I started to develop my voice for my own advocacy. My voice wasn’t important enough to be heard at that age, but I learned at the very least to advocate, to say what needed to be said, and do what I needed to regardless of whether or not my voice was heard.
In eleventh grade, the bell had just rang to begin class when I started to feel woozy. I was in the process of deciding what level of woozy I was at….
Suddenly my english teacher dolled out a pop quiz. As I looked at this blank sheet, my head was buzzing. I knew something was wrong at this point. I also knew that this particular teacher was not letting me out of the classroom. She had already professed her dislike for my “special treatment” when I visited the nurse’s office… and she had just handed out that pop quiz. I raised my hand anyways. Advocacy first, always.Eleventh Grade
“My blood sugar is low. I need to go see the nurse.”
This is one of those moments when my head was not clear enough to really argue. But I needed to get to the nurse’s office where I had access to sugar. The teacher wanted me to finish my quiz first, but I could hardly form sentences, let alone fill in blanks. I can still remember the teacher rolling her eyes at me.
But I didn’t have time for this. I needed that sugar. I got up and wondered out into the hallway. I could hear the teacher behind me asking where I thought I was going without a hall pass. Being a rule follower, I knew very well that I was breaking the rules. I couldn’t tell if I was sweaty from the anxiety of defying this woman or sweaty because my blood sugar was even lower than I thought. And of course, I ran into the principal. In the hallway. Without a hall pass.
Though the principal couldn’t understand what I was saying, the one thing he did get out of the conversation was that I needed the nurse. The nurse saw to my needs upon arrival and the world went on. And yet to this day, I think how the teacher probably is still rolling her eyes because she never comprehended the significance of the situation. I wasn’t able to effectively advocate for myself then. To be honest, I’m not sure I even knew at the time how biased this teacher was treating me and that I needed an adult advocate whose voice she would respect. I just know it’s a scary memory that will always haunt me.
All of this is to say that the importance of self advocacy was highlighted time and time again throughout my teenage and early adult years. I could share memory upon memory. To this day, I have to advocate for myself when going through airport security in Tennessee because they can’t seem to comprehend the statement, “I’m wearing a medical device that cannot go through a metal detector.” Not only do I have to go through the uncomfortableness of having someone else’s hands on my body (for the pat down needed since I’m kind of a cyborg), but I also have to argue with the TSA agents first to get my medical needs met. I’ve even had a TSA agent scream at my mother in the recent years regarding this particular advocacy.
So when my daughter started getting teased by classmates and couldn’t understand teacher’s instructions like her peers, I naturally stepped up to do some much needed education and advocacy.
With little ones, it can be both easier and harder than educating adults. Some children accept what you’re saying and their behavior reflects as much. Others move on, marking your child as too difficult (or unpleasant) to interact with. As my daughter has gotten older, I’ve even drawn a few diagrams about “brain wiring”. It’s certainly not scientific, but it get’s a child the respect owed in regards to their invisible disability.
When speaking to adults, I use more science. I also give analogies for easier understanding. Apraxia of speech means that every time my daughter says a word, even if she’s said it a million times before, it feels like she’s doing it wrong and she stumbles through it. It is like getting on a bike from the wrong side. Every time. Every word. And the more exhausted or emotional the exchange, the more difficult it is for her to perform. This is my favorite little speech for her. I like to emphasize that her comprehension is in tact and she knows what she’s trying to communicate. She just doesn’t always have the tools to make the right sounds come out of her mouth to express as much. Advocacy. This is what it looks like.
The importance of it is that my daughter knows now that people may treat her unfairly or differently. She also knows at 8 years old how to advocate for herself. She knows that she has the same right to stand on this earth as any other child. She knows that she works ten times harder than most kids to communicate. She knows that she deserves the same access to education that neurotypicals have. And she knows that if anyone ever questions that, she has a warrior on her six to cover her back and defend what she has already told them– that she’s both a badass little kid with a disability that makes her speech sound different, and a human that deserves respect and kindness.
“Never be afraid to raise your voice for honesty and truth and compassion against injustice and lying and greed. If people all over the world…would do this, it would change the earth.”William Faulkner