On Not Being “Pretty”

My friend Cara wrote this awesome article about being “ugly” disabled.

You should click on the link and read it.

Go on, I’ll wait.

Isn’t it great? The article got me thinking.

Like Cara, I also have cerebral palsy. I sometimes use a transport wheelchair because I have poor balance and I can’t stand for too long.

When I sit down, my body “flops”, or it slowly leans to my right side until I am almost lying down. When it doesn’t lean to the side, it tends to relax too much, sliding down the chair. An upright position is not something I can keep.

My hands also fail me. I cannot hold anything firmly and I drop things without even noticing. Eating is usually messy and that’s one reason I prefer to be assisted when my adaptive utensils are not available, which happens every time I travel.

Do you get the picture? Not pretty.

I am also epileptic. After seizures, sometimes for hours afterwards, my face “sags”. My mouth remains open, my lips drooping. Add to that the lack of motor planning, making it hard to swallow, I might, and usually do, drool. Seizures make my body even more uncooperative.

As much as I want to interact, I just sit there. Most of the time, I cannot type (but I am listening, and will be able to process everything, even if slower)

Again, not really pretty.

I am Autistic. I stim in public, shamelessly. This includes making noises, “blowing raspberries”, spinning or bouncing. I am fine with that, I don’t think it is ugly at all. I also get very overwhelmed in certain situations, even when I am extremely happy to be in that place, at that time, with those people but my face does not show my emotions. So, I “unprettily” sit there, apparently aloof, many times too overwhelmed to type.

This is an “ugly” image.

The thing is, this is also me. If you see me often, you will see me a little less overwhelmed, therefore better at typing and interacting. You will also see me smiling more, and you will probably understand why my body does all those weird things. You will – willingly or not – learn a little more about disabilities. Hopefully you will be open to see all the things we all share, instead of all the peculiarities that makes some want to avoid close contact with disabled people.

Like Cara, I am not trying to make you pity me, nor am I apologizing for not looking conventionally beautiful, or how I might present myself at different moments.

I write this because disabled people come in all sizes, shapes and color. We are everywhere. We should not have to be sympathetic to a non-disabled majority that can only tolerate us if “conventionally beautiful” disabled people are portrayed in the media, in ads and in special events. This is pity porn/inspiration porn.

Acceptance is not conditional. If we can only be represented according to what is palatable to the majority, we are not really welcome. I am an activist for, among other things, acceptance.

Personally, I don’t see beauty the same way most people do. This is not a joke, and I am not trying to present myself as above society’s concept of beauty. It is not “magic”, it is just who I am, how I experience what I see.

I do understand the conventional definition of beauty but my brain does not primarily translate what I see by using conventional definitions. It is more like the energy I feel from people, or the combination of different things I see in pictures. It is how I feel each person. It is also a sensory thing.

I am told that I have a beautiful smile. I am not above feeling happy with the compliment. But that smile that seems to be so pleasing to most people is the same smile nobody sees when my face is dealing with other things. My smile gets delayed, hidden, waiting for my face to be ready to show it.

I still want to be allowed to be “unpretty” and in public – with a side of badassery, because my friends also say I am badass. That I don’t need to show at that exact moment. That is in my biography – or so they say.

Here are three pictures of very different moments. The first picture is of me, smiling at the camera. I was at the beach, the wind was blowing on my face and it made me laugh.

Photograph of Amy Sequenzia, woman with white skin and dark brown hair smiling at the camera at the beach.

 

The second picture is of me, spinning n front of a car. I was having a good day, It was cold and was experiencing the moment with all my senses. I was feeling good.

 

Photograph of Amy Sequenzia, woman with white skin and dark brown hair smiling in front of a blue van.

 

The third picture is of me with two of my friends, Sam Crane and Emily Titon. I like then A LOT! I was so happy to meet them at the SDS Conference, but that day I wasn’t well, I had a bad seizure and didn’t sleep much. My face shows the effects of a bad night with seizures, even though my feelings were of happiness and excitement.

 

Photograph of three people in front of a table that has an iPad on it. The first person on the left is sitting down,has brown air, white skin, and is wearing glasses and a black sweater. The person in the middle is sitting down, has black hair, is wearing headphones and a pink sweater and black t-shirt. The third person is standing, has brown hair, is wearing a cap, and plaid shirt over a black t-shirt.

 

 

Same person: Me