Anexis Matos

For about a year, I let my hair grow. I remember being excited to see the progress of growth, but, at some point, I got bored and tired. It didn’t help that, if I wanted certain styles, I had to ask people to do my hair for me. If I was going to have natural, long curly hair, then I was going to learn to style it. Otherwise, it was pointless.

I hate doing my hair, though. It’s the reason I cut it for the first time about four years ago. For the first time, though, I was excited to do it. It was growing out naturally and it was very pretty. I wanted to see what I could do with it, but, again, I wanted to do it alone.

My excitement only grew when I went to Dominican Republic. The first day I was there, my cousin styled it for me and, for two weeks, I didn’t do my hair. It was perfect, considering how much I despise styling it. My cousin curled my hair using water and jel. She braided the top, leaving the curls to pile neatly on my head. The braids on top looked like a headband.

When I came back to the United States, my excitement dimmed. I was given suggestions to style my hair by myself, but I couldn’t implement them. I was paying for school and could not spend money on myself. I was stuck asking people and I didn’t appreciate that. Eventually, I decided to cut my hair again. It’s definitely easier to manage.

Since I decided to cut off my hair this spring again, I asked my sister to do it instead of going to a barber. My sister did most of my haircuts because I don’t appreciate the way the barbers treat me, but we’ll get there.

When my mom found out I was cutting my hair, she attempted to convince me to go to the barber.

“Why don’t you wait?” she said. “We can go to a barber so they can give you a good haircut.”

“No, Mom,” I said. “I don’t want to.”

I proceeded to cut off all my hair and I got varying opinions when people saw it. Most were not happy, preferring my long hair, including my mom. There was, at least, some genuine criticism. The biggest conversation was about my appearance, but when is it not? I don’t know why they continue to judge my choices. They know me. Anyone who does knows I don’t give a fuck about my appearance. I only do things I like and ignore most people’s advice about it. I know what I like and, as far as I’m concerned, that’s enough.

Dad was driving me to school days after my haircut. We talked about how great the style was.

“It’s easy to handle,” I said.

“It’s why I keep it this short,” he said.

I decided then to mention the issues I have with barbers. It seemed safe enough.

“I decided not to go to the barber for a haircut,” I said, “because I don’t like the way they treat me. They always talk to you. They ask you about the haircut I want and ignore what I say.”

“You need to change your way of thinking,” he said.

Excuse me? What? What did you say?

I need to change the way I think? When I’m the one who always has to deal with people like this? When I’m the one they ignore for you since I’m blind? I need to change the way I think? What the fuck kind of logic is that?

I didn’t say anything after that. What was the point?

Reflection

Unfortunately, this is not fiction. This is not the beginning of a story where a character struggles to be understood by those around them. Where they find someone who finally does, either a friend, a mentor of some kind, or romantic interest. This doesn’t lead to the happily ever after, the perfect ending with the perfect resolution.

No. This is real. Unfortunately, this is not a one-time occurrence.

I face many challenges as a person with a disability. I struggle finding employment for a variety of reasons. The two main reasons are discrimination and the fact that I tend to go into a spiral of self-hatred when I search for jobs and go on several interviews without results.

I have a hard time socializing. Depending on the event, I might feel excluded or overwhelmed. A party with very loud music is a great example. There are a lot of people and too much to take in. I keep my social interactions as small as possible. I also attribute my social skills to the fact that I like specific people.

I struggle with things like this. While not on a daily basis since I don’t go out all the time, it happens enough that I have at least three stories I can tell. Isn’t that great?

My dad exhibited behavior that he probably considered good. I think he was attempting to offer what he thought to be good advice. I don’t think his intention was to get me mad. His intentions, though, are not the point. I’ll take them into account, but it’s not the point. The point is that he made me mad.

There are a few problems with this behavior. First, though, we need to talk about the models of disability and what they suggest. When providing examples, I’m going to be basing them on my experience.

The social model of disability suggests that we as people with disbilities are not the problem. That society is and that it needs to change to accommodate everyone. It’s about making the world accessible whether you have a disability or not. Changes can be minimal like having Braille signs, ramps, and elevators. These changes are noticeable ones, but there are some that we overlook. Accommodations for work and education. Closed captions. Audio description.

The purpose of any accommodation is not to make things easier, but accessible. Making something accessible allows people to be on the same level. For example, let’s say I’m taking a test and everyone has one hour to complete it. Depending on the test and how I’ll be taking it, that’s not enough time. For this reason, I get double time, so I have two hours instead of one. I’ll explain more about testing some other time, but the point is that, most of the time, I can’t complete a test in the same amount of time my sighted peers can. This accommodation allows me to have a chance at getting a good grade like everyone else.

The medical model of disability suggests the opposite. It suggests that we’re the problem and that society doesn’t have to change. Instead, we do. We have to do everything we can to conform to society’s demands. That society does not have to accommodate us. That they have to do whatever they can to fix us because, according to this model, we’re broken.

Unfortunately, this model is still prevalent. My theory is that it has brought on some terrible things. Among them is inspiration porn, a phrase coined by Stella Young referring to the objectifation of people with disabilities and ableism. To learn more about inspiration porn, check out this ted talk.

I’d argue that ableism existed before these two models of disability were known, but the medical model has made it easier for people to be ableist. It provides the perfect excuse. It views us as less than everyone else because we have a disability.

Ableism comes in all forms. I personally believe that there is intentional and unintentional ableism. They carry the same weight to me, but thinking about it this way allow me to analyze situations differently.

I think of intentional ableism as people who are educated on a disability, but choose to be ableist anyway. A good example can be someone who works at a disabilities services office at a college or university who infantilizes you at every turn. This personally happened to me and I don’t wish it on anyone. This person was the coordinator of this office and they work with people who have different disabilities. It can be assumed they have some education on how to work with them. Somehow, though, they still managed to infantilize me when I complained about something.

I think of unintentional ableism as people who don’t realize they’re being ableist. This happens more often in my life. When I’m out with a sighted person, people often talk to them about me, asking questions that I could very well answer. You know, like what I just discussed?

Again, I don’t think my father thought this was bad, but it was. He was unintentionally ableist. In an attempt to give me what he considers good advice, he was unintentionally ableist.

Ableism in general is infantalizing. Invalidating. Degrading. Humiliating.

By minimizing my experience, it told me that my feelings are not valid. That I’m the one who needs to change to conform to what everybody around me believes. It infantalizes me.

This is part of the reason I don’t like leaving my house. Dealing with people can be so irritating. I’m not always in the mental space to be polite and, when I’m not, other problems can come up. This is especially the case with my family. They always critique the way I act. Judging the smallest things.

I know people try to be helpful, but have some fucking sense. Be respectful. The least you can do is ask if someone needs help instead of assuming they do. Talking to the person with a disability instead of relying on the one who is able-bodied. It’s only polite. For the love of the universe, engage in boundaries.

How do people expect me to react to ableism? With a smile? A simple explanation every time it happens? Let it happen and pretend it doesn’t bother me? Just to be polite to people that aren’t polite to me?

Do you know how exhausting that is? How draining? How much of a mental toll it takes?

Every year, I grow to dislike dealing with people in person. Every year, I’m less willing to socialize. Every year, I grow to enjoy being alone more and more.

I’m not in the business of educating people on blindness and ableism, but I’m hoping that, by discussing my feelings, I can at least bring awareness to them. The social model of disability suggests that society needs to change. This is true, but it sarts with people. People need to change. Once they do, society will follow.