Self-Advocacy

Written by Kristi Caporoso

Anybody who knows my mom knows that she is a force to be reckoned with.  When I was first diagnosed with type one diabetes at 13 months old, the first meal the nurses brought to me when I could finally eat again was a hard boiled egg and a bagel.  Not a particularly great meal for a baby.  They say my mom's screams echoed all throughout the halls of the wing.

Having parents who stood up for my rights as a diabetic child before I knew how to molded me into a person who, although typically shy, will defend and advocate for herself and her diabetes.  And other people's diabetes, for that matter.  Among other things, this is a very important trait you should strive for as a person with diabetes or as a parent of a child with diabetes.

We live in a very crowded world.  If we don't speak up, it's easy to get stepped over and ignored.  This is true even for people without diabetes.  But for people with diabetes it can be not only frustrating, but dangerous as well.  I see an angsty quote floating around the internet sometimes: "Nobody cares unless you're dying or pretty."  While this is quite a melodramatic, pretty pessimistic view of what I'm trying to say, it does reflect some unfortunate truths.  Unless your situation is dire, or a you're a big celebrity, the people in charge tend to disregard your needs.  This can happen in schools, at camps, at college, and many other macro systems.  As individuals with diabetes or parents of children with diabetes, we know how important care and management is.  But because we are so manageable, people tend to think we don't need special services or have certain rights.  College professors may tell you not to eat in their classroom, no matter what your "excuse" is.  School districts may drag their feet putting together a care plan for your student.  I have been especially lucky on this front, but I have heard stories that infuriate me.

One thing you will have to learn to do, especially if you are entering college, is stand up for your rights.  Tell your professor why you have to keep snacks on you, and if they don't want to hear it, go to the dean.  Don't let it go.  Make your voice heard, and change the circumstances for yourself and for future students.  The same goes for parents.  Your child may be too young to advocate for themselves, and no one else is going to do it for them.

In my opinion, self-advocacy is important in social situations as well.  I'm a fairly timid person.  I blend comfortably into the middle blob of giant lecture halls, and don't make a peep.  But in one of my recent semesters, a girl who was not so reticent to speak went off on a story involving a girl she knew from preschool who had diabetes and was spinning it in an awfully negative way, making several cringe-worthy remarks.  Of course, the idea of raising my hand and speaking to this group of 100+ students made me sweat profusely, but I thought to myself, who am I if I don't defend who I am and what so many people I care about are?  And I did. I mustered up the courage to squeak out the basics of diabetes to the whole lecture hall, and they were very receptive and very interested.  And very naive.  Immediately after finishing I did not at all regret speaking up.  They say "speak the truth, even if your voice shakes," and I am a firm believer in that, especially when it comes to your diabetes.