My Face Isn’t Wrong
In honor of Facial Palsy Awareness Week & Women’s History Month, I’m revisiting a post I wrote ages ago.
A few months ago, I was wasting time reading a Ranker roundup for profound social media posts. One of them was a Tumblr post that said:
It's more socially acceptable to hate our bodies than it is to love them.
That's a gut punch to read, isn't it? We tell people to love themselves, but then call them vain for constantly posting selfies. We passive-aggressively put people down who always do their makeup and hair - "I wish I had time to do all of that in the morning!"
When you have a visible disability, loving your physical self is even more difficult. Society expects people with disabilities to look a certain way. If we don't fit that expectation then we either 1. can't be disabled or 2. don't deserve to look "not disabled."
I have felt ugly most of my life.
Correction, other people made me believe I was ugly. My eyelids droop due to my mitochondrial disease. The level of droopiness changes depending on the level of dryness in my eyes, how much sleep I've gotten, whether or not there's a lot of light in the room, allergies, etc... I also have ophthalmoplegia, my eyes do not move. They both sit toward the center of my face.
This seems like such a small thing, but it was enough for people to constantly verbally and even physically abuse me as a child (those details are for another article).
Adults react weirdly to me, even now. Sometimes I know that they can't quite tell what's off about me. They just know there’s something wrong about how I look. Or, they think I'm high on drugs. I'm asked that question often.
2024 interjection: Making fun of my eyes is a favorite pastime of adults on social media. It happened on TikTok as recently as two weeks ago. Anyone with a facial difference will tell you that adults are often worse than children when it comes to attempting to make us feel bad about ourselves.
I've had the other end of the spectrum, too. People tell me I don't look disabled (something it would only take a neurologist a passing glance to determine). That I don't look blind, something that I have been my entire life. That I don't look like someone who is in constant pain. That I don't look like someone with extreme muscle fatigue.
Once, I left my mother to hold my guide dog while I went to the restroom. I walked by a group of young girls on their way out. They stopped and talked to my mother and to coo at Buttons. When she told them that he was my guide dog, one of them said to her "She doesn't look blind. She's so pretty!"
I was both flattered and horrified at that comment. The idea that to be blind is to be unattractive is a depressing thought. Yet, it is one all too relatable to me and I'm sure to many people reading this.
It was also extremely confusing to hear someone say that I was too pretty to be disabled. It was absolutely counter to what the majority of society had said to me. Typically, I look too wrong to be pretty or even to be acceptable.
While many blind people are light sensitive, frequently, we wear sunglasses for what Medical News Today calls, “aesthetic purposes.” Let me translate that for you - we often wear sunglasses to make you normies feel comfortable. We do it so that you won’t physically or verbally abuse us because discomfort often makes you violent.
Did you know?
The violence of able-bodied people kept me trapped in a constant cycle of worry. When I say violence, I truly mean that word. I have been physically assaulted while people called me “r-word” because of how I look.
2024 interjection: I love makeup. I love playing with shapes and transforming myself. But it is also armor for me. For the 25 years of my life, it was rare to see me without eye makeup. I would frequently ask my friends, “do my eyes look okay?” What I meant was, “have I disguised my disability enough?”
I say disability and not facial difference because I also didn’t want anyone to know that I was legally blind or had other health issues. It wasn’t just about appearance.
It wasn’t vanity, it was self-preservation.
I have very few photos of myself because why would I? Why, when society tells you that you are a monster would you want to keep a record of that?
Back in 2015, I started taking selfies so that I could make sure I applied my makeup properly. I'd take them from all angles. It's the only way I can be sure that things are blended and even.
For a long time, I deleted these images right away. I didn't want to look at them. Examining them made me nauseous. Yes, of course, I've had boyfriends and friends who have genuinely told me that I'm beautiful - but they love me.
Love erases the monsters you carry with you.
I don't remember when it happened, but there was a point where I asked myself to look past the monster people told me was there - the monster everyone laughed at in school. The one people whispered about in various work environments. I stopped looking at those pictures through the lens of what was wrong and started to look at them through the lens of what was right.
I started taking selfies on days when I didn't wear much makeup. Days where all I did was throw on some BB cream, a bit of contour, and lipstick.
For me, not wearing eye makeup was an act of defiance and an act of fear. I instantly wanted to erase every photo. I did erase some, but I always force myself to keep one. A few of them have ended up on my Instagram or as a Facebook profile photo.
Each time I post a photo I am filled with dread because I'm putting the monster, my facial difference, my disability, front and center.
That last sentence feels a bit dramatic. I know there are people who have far more apparent physical presentations of their disabilities. And you might not even be able to tell at first glance that there's something different. It probably looks like I'm mid-blink in a lot of photos. But, that's just how I look and how I look has always been wrong to society.
Now, it’s 2024, years after I wrote this original piece. At that time, I never could have imagined publishing any of the photos that are published here. Over the years, my ptosis and ophthalmoplegia have progressed. No amount of makeup tricks hide it or lessen it at this point.
I also don’t need them to. I’ve grown into my disability and my facial difference. I’ve made TikToks without any makeup on. And yes, there is always someone in the comments dehumanizing me for how I look.
I do a lot of public facing work for my career that a decade ago I never would have done. I’ve spoken at conventions, led livestream debates, and I do regular client-facing video calls for my consulting business. There may be people who want to discriminate against me because of it, but, it doesn’t bother me anymore because
