Self-Advocacy is Only Half of It: On the Importance of Listening

So I may have had a minor freak out on my sister in the parking lot of a restaurant the day before my dentist appointment when she reminded me about it.  I told her that I had tried to say I didn’t want to go to the dentist, that I hated them, and that I really didn’t want to go because it HURT. Plus, truthfully, I was a little bit scared. She told me that I could advocate for myself at the appointment and that if I didn’t want to, I didn’t have to go. So I went.

Now, my fear and hatred of dentist appointments and all things to do with teeth have several roots (no pun intended). For one thing, I once had baby teeth that needed to be pulled, and I remember the dentist putting his knee on my chest to pull it out. It hurt a lot and I kept on spitting blood, but no one seemed to think there was anything wrong with that. Seriously, he should have figured out that by the time he had to put a knee on my chest that maybe we should reschedule an appointment and come back later when the root had dissolved more.

My other issue came from my orthodontist. For one, they never really thought that my cheeks being torn up by the orthodontia to the point that flesh in my cheeks was hanging and bleeding. I had had my tongue drilled through once as well (by accident while they changing out some of the orthodontia). Seriously, I was eight or twelve at the time, they should have expected my tongue to move. 

But the biggest problem at the orthodontist was when they ignored my fledgling attempt at self-advocacy. They had just increased the length of my orthodontia and it was causing my jaw to hurt horrifically. I told them to stop, but they ignored me. 

Around five minutes after they completed the procedure, I purposefully bent the orthodontia with my mouth, hoping that would force them to fix the problem. Of course, everybody got VERY angry at me. And I had to make up a story about being bullied at school because of my orthodontia so they would finally stop getting mad at me. They then left it as it was beforehand without the increase in length.

While I was bullied for other things, I definitely wasn’t bullied for my dentistry. Truthfully, they were the real bullies by taking away by bodily autonomy and ignoring my claims of pain. [Creigh’s addition: And, really, in what world is bullying to be taken seriously, but someone telling you they're in serious pain is not?!] 

So, yet again, four days ago I had to attempt advocacy about my mouth…with my mouth (joke intended). I told the dental assistant about how I had a sensory disorder and that brushing my teeth and especially flossing really hurt, and that she wasn’t to floss me. She kept arguing that it wasn’t sensory, it must actually be me grinding my teeth, like she knew my body more than I did. But finally she conceded and said she wouldn’t floss me, and was kind enough to give me numbing gel while she did her work.

Unfortunately, she then decided that it was okay to floss me. I don’t know why I didn’t speak up about that. Sometimes self-advocacy just feels like wasted energy. Because after you advocate for the first time and they won’t listen, you know they won’t follow your wishes at all. I’d hoped that would have ended when I became an adult, but it didn’t.

I went off, disappointed. Yes, my teeth were clean, but my wishes weren’t respected. And the numbing gel hadn’t changed the fact that I could feel every scrape against my teeth, taste the blood in my mouth, and hear the high pitched whirring of the tools.

At the end, I dared to ask her, hey, look, do you know of a toothpaste that doesn’t hurt? And she decided I was allergic to an ingredient in toothpaste. At that point, I felt too cowed to be able to correct her. So I didn’t get the information that I needed.

Afterwards, I shared the information with my sister, and Creigh shared with me that the receptionist had asked her if she would sign my HIPAA waiver for me, or if I was competent enough to do so myself. I’m freaking twenty years old. I’m an adult. Yes, I’m competent. 

Unfortunately, this sort of issue has followed me around in all sorts of areas. Including medical, where not advocating for yourself can be an incredibly big issue. Multiple of my doctors have not listened when I told them I did not feel comfortable taking certain medications. And I felt cowed into accepting the prescription. Even though I tried to argue, they wouldn’t even listen. They just bulldozed over me.

So, like the girl in the orthodontist’s office so many years ago, I had to take matters into my own hands. I simply didn’t take them. Or I’d try taking the medications and then stop taking them by myself. Which led to dangerous withdrawal effects more than once. Because I didn’t feel like I could tell them I wanted to stop and have them listen to me.

All of this could have been avoided if I was listened to. Self-advocacy is only half the story. You have to have someone to listen to your words. Otherwise you just stop advocating. Because what’s the point?

So do us Autistics a favor and please listen to us when we try to advocate for ourselves? Because it’s really hard and because we’re going to have to be doing it for the rest of our lives.

-Caley

[Note: Post dictated by Caley and typed by Creigh, but these are all Caley's words.]