Defining Disabilities, Part 2

The Disabled Identity

I was born six years after the signing of the Americans with Disabilities Act. This act is what granted disabled people civil rights. What this means is that I am part of the first generation not to be denied access to education and protected against discrimination in public services and employment. This particular group is called the “ADA generation.” Our society is at something of a turning point in history where the ADA generation has grown up, graduated college, and is now employed in the workforce. They are bringing new perspectives and new ideas to the table because previously they weren’t allowed, which is why it is becoming more common to see the story of disability being brought forth.

Of course, there is still a lot of progress to be made. When I learned about the history of the disability civil rights movement and the importance of the ADA generation, it taught me a lot about my own disabled identity. In part one, I discussed how difficult it is to define what is and what is not a disability. Everyone has different disabilities in the same way that everyone has different abilities. But that doesn’t mean everyone has a disabled identity.

Identity is a complex construction made up of many different parts. I find it helpful to think of identity as being a city. Each block is a different part of your personality and experiences. Within the blocks are buildings, which are the people, moments, and memories that contribute to who you are. Some things are bigger parts of you than others, thus they will take up more space in your city. Maybe you have an entire neighborhood dedicated to your religious experiences. Maybe you are an athlete and you have seven soccer fields all within one mile of each other. Everyone’s city is unique.

To make things even more complex, your city is always under construction where new parts of yourself are being built up. And there are parts of you that have abandoned or grown out of, which remain in various states of decay and marred with graffiti. There are intersections in your city where parts of your identity overlap. The roadways of being a mother overlap with the roadways of being a daughter. Intersections where religion crosses with your heritage. This concept is called intersectionality, referring to the overlapping of socially constructed categories that converge in each individual.

Sometimes intersectionality can cause a person or a group to experience more discrimination than another. For example, I am a woman and I have a disability. Both groups face certain amounts of discrimination, and I experience discrimination on both counts. For another person, they may be a Christian and transgender. A third example, a person of color who was born and raised in Germany, who has immigrated to America. In each of these examples, the people have major parts of their personality that seem to conflict in the outside eye.

I consider these things to be roadblocks. Let’s take one of the previous examples. Susan is a transgender Christian. She’s driving around her city then has to slam on their breaks because somebody put a road-block in their way. “You can’t be Christian and be transgender at the same time,” the stranger says, “It goes against the scriptures.” Susan is forced to take an alternate route, but again, the same thing happens, so she has to take another detour until she finally reaches her destination. Roadblocks are things that society puts in place to try to get people to be a certain way or because society doesn’t acknowledge certain overlaps in identity.

Coming back to disabilities, a good example is how being disabled crosses over with sexuality. Many people assume that disabled people can’t or shouldn’t be attractive or in any way sexually expressive. This shows up in things like adaptive clothing. Adaptive clothing is designed for those with physical disabilities. For example, shoes that use a zipper or velcro for someone who finds shoelaces challenging to tie. Or for someone that struggles with buttons, there are magnetic closing shirts instead. Or clothes with specially placed holes and pockets for a medical device and tubes.

Unfortunately, adaptive clothing is often designed without any sense of style. They look like medical clothing, unattractive, or the adaptation is painfully obvious. This means that some people with disabilities don’t have clothes with which they can express their individuality or sexuality. Imagine going through life without ever being able to wear something that makes you feel pretty or handsome? That’s the reality for some people. Society throws road-blocks in disability city saying, however unintentionally, “Whoa, stop. You are disabled. You can’t be attractive. You can’t have stylistic clothes to express yourself.”

In my city, some of the frequent road-blocks I experiences are when I go to the movie theater, only to find out that they don’t keep their closed caption devices charged. Roadblock, I have to take an alternate route. They start charging two. When the first one runs out of battery, I go to get the second one, which thankfully lasts for the rest of the movie. Another roadblock is when I’m checking out at the store and the cashier asks me a question. I have no idea what they are saying. I have to ask them to pull down their face mask so I can lipread or I ask them to write down what they are saying on a piece of paper—that’s a detour I have to take regularly. When I hang out with a friend and I happen to be driving, I can’t carry a conversation in the car and drive safely at the same time. I have to detour, explain to my friend I can’t understand them while I’m focused on another task, and we wait until we reach our destination to continue our conversation.

Members of the disabled community are used to facing roadblocks and detours every day. We adapt ourselves to a world that wasn’t designed for us. The deaf in a hearing world, the wheelchair user in a society that relies on stairs, the blind in a world that caters to those who can see, the mentally disabled who are ignored and shunned by those who don’t acknowledge or understand that everyone’s minds function differently. Constantly dealing with roadblocks is a large part of the disabled identity.

Another part of identity is pride. This is the flag of disability pride. It was designed by Ann Magill, a woman who wanted something to express her pride in being disabled. The black field represents those who have suffered from ableist violence, rebellion, and protests. It also represents how disabilities are kept in the dark. The five colors represent different types of disabilities and the wide variety of needs and experiences that divide them. The zigzags represent how people with disabilities must constantly adapt and overcome barriers that society puts in our way. The parallel strips represent that even though every person with a disability has different experiences, we also share a lot of the same barriers and experiences. Essentially it says “we are not alone because we have each other” and “we are stronger together than we are apart.”

Disability pride is something that I have struggled with throughout my life. There are some days that I’m proud to be deaf, to be different, and to be an example. I feel like that when I talk about disability studies or when I take my hearing aids out for sparring at karate. But there are moments that I feel ashamed for being deaf too. Like when I can’t understand my two-year-old niece asking me for water until someone else gets it for them. I feel ashamed when I can’t understand the cashier and I end up holding the line. One of my favorite quotes about disability pride comes from Eli Clare, a disabled, queer writer, and activist. “Pride is not an inessential thing. Without pride, disabled people are much more likely to accept unquestioningly the daily material condition of ableism: unemployment, poverty, segregated and substandard education, years spent locked up in nursing homes, violence perpetrated by caregivers, [and] lack of access. Without pride, individual and collective resistance to oppression becomes nearly impossible. But disability pride is not an easy thing to come by. Disability has been soaked in shame, dressed in silence, [and] rooted in isolation.”

I didn’t gain any pride in my disability until I was in my later teenage years. It started with taking a sign language class in high school. Then I got involved in the Deaf community for a short time, playing on the Utah School for the Deaf and Blind basketball team. For the first time in my life, I connected with others like me and my disability was cast in a whole new light. I realized I wasn’t alone and I was a part of something bigger than myself because of my disability. When I first learned to spar in karate, I was uncomfortable taking my hearing aids out. It is a side that I never let others see.

When the time came for me to attend my first belt test where sparring was required, I was afraid of being yelled at by instructors who didn’t know about my deafness and being punished for not following instructions I couldn’t hear. I decided I needed to mark my sparing helmet in some way so that my Sensei could point me out to the other instructors. But at the same time, that felt similar to Jews being marked with a star of David during WWII. I didn’t want to label myself as different.

At my request, my brother made me a special sticker to put on the back of my sparring helmet. The words I had chosen were “DEAF PRIDE.” At first, I was embarrassed, but later found it empowering. Every time I put on my sparring helmet, I knew I was representing an entire community. I knew that such a mark would make people watch me and judge me, how they would think of me as a charity case, how I was excepted not to amount to anything because I was disabled. And despite everything that everyone thought about me, I was still here. And I was proving them wrong.

January 2020 Tournament, 3rd place Sparring

The last thing I want to talk about today is stereotypes. They are one of the most harmful things when it comes to disabilities because they are unique for each individual—no two individuals have the same experience even if they have the same disability. I have found that the best definition of a stereotype comes from Chimamanda Ngozi Adichie in her TEDtalk The Danger of a Single Story. She says, “the single story creates stereotypes and the problem with stereotypes is not that they aren’t true, but that they are incomplete. They make one story become the only story.”

Chimamanda Ngozi Adichie

For example, stereotypes about being deaf will tell you that I am nonverbal, rely on sign language, and if I talk, I have a heavy accent. In reality, I rely on verbal communication, have no accent other than my Utah one, and while I do have some knowledge of sign language, I am far from fluent. At best, I might be able to communicate with the skill and finesse of a three-year-old in sign language. I do rely a lot on lipreading, which is steeped in many stereotypes on its own. For one, lipreading is extremely inaccurate. This is because most sounds of speech are made inside the mouth, nose, and throat. I can only “read” what happens at the front of the mouth. Even the best lipreaders in the world can only understand a third of what a person says.

At the same time, because I don’t fit the stereotype people assume that I’m not deaf or not disabled. I had that happen once, back when I was working at a local fudge factory. We were working on hand-wrapping fudge slices and I was talking something about being deaf. A coworker of mine pipped up, “But Rachel, you aren’t really deaf.”

“What?” I said. (It would be helpful here to say that I have two kinds of what; “what” as in, “I didn’t catch what you said and could you please repeat that” and then I have “what” as in did you really just say that?)

My coworker, thinking it was the first kind of “what,” repeated herself. “You’re not really deaf.”

“Why do you say that?” I asked.

“Well, you have hearing aids. And you talk just fine. You aren’t really disabled.”

I set my fudge slice aside and made eye contact with her. “I have hearing aids because I am deaf. Hearing aids do not correct hearing in the way that glasses correct vision. Hearing aids function like a cane helps someone walk. Not a cure, not a correction, just there to help. Just because you don’t know my struggles and you don’t see the things I have to do every day because I am deaf, doesn’t mean you get to label me as not deaf. What you mean to say is that I don’t fit the stereotype of deafness, which really, doesn’t fit anyone at all. Plus, the reason I talk so well is that I went through years of speech therapy. I was taken out of English, math, and science classes because learning to pronounce “star” was more important than knowing how to do my times tables. People like you-” I stop abruptly, trying to get my temper under control. It takes a moment before I continue. “Listen, I understand that I might not seem disabled. It reflects well on you that you don’t see me as disabled. But most disabled people are people just like me. You shouldn’t believe in stereotypes. Every stereotype I’ve ever heard of is wrong. I am deaf, through and through, whether you believe it or not.”

Disability pride and identity come with being seen and with connecting with others who are like us. The disabled community differs from others because anyone, at any moment, can become disabled. When we refuse to talk about disabilities in classrooms or represent them in books and movies, we are not preparing people to become disabled. We are not teaching that it is okay to be disabled or that it is normal to have a disability. Oftentimes, a character or a person becoming disabled is presented as an “end of the world” or “worst-case scenario” kind of thing. In a way, it is an end. But it is also the beginning of another world. The construction of a new block in a city.

Each and every person who has a disability comes to understand it in a different way. It is a life-long journey. I remember feeling lost as a child, wrestling with the complicated intersections of being deaf. I experienced shame and embarrassment for being different and it wasn’t until I started learning that there were others like me out there that I began to overcome those thoughts and feelings. In writing characters with disabilities, something that is important to think about is their sense of identity and pride. Where does their pride come from? What experiences have they had? What is the disabled community like in your world? Thinking about these things can help writers develop more well-rounded characters. Disabled people are not usually born proud of who they are. It takes a long time to redevelop your sense of identity when you have or develop a disability. It’s a story that isn’t often discussed or written about. I think it’s time we changed that.

What are some experiences that have shaped your city? Comment below and let me know!

Welcome to Listen Up

An Introduction to the story and the person behind the blog

Hello Reader!

My name is Rachel Spencer. I am a Deaf writer and aspiring author. I started this blog in my senior year of college to help writers and educators: learn more about disabilities, why representation is so important, and how to incorporate disabilities into their writing. But I hope there’s something here for everyone.

Each week* I write and post an article. Every other week the article will be about disabilities in general and how to apply disability studies into your writing. In between these articles, I write a “Book Report” analyzing a book, movie, or TV show under a disability lens. These posts will serve to provide teachers with examples of disabled literature that they can include in the classroom. For writers, they provide different ways to incorporate (or how not to incorporate) disabilities into their own works.

I started this blog because I notice that the subject of disabilities rarely comes up in the classroom. In addition, I experienced growing up without stories or heroes that were like me. The lack of representation had a severe impact on me growing up.

Like many who are born or become disabled young, I grew up isolated from the disabled community. I thought I was alone. I remember searching the library for stories with characters who were deaf like me, but not being able to find anything. At eleven, I remember sitting on the steps at recess and wondering what my future would be like. Would I be able to have a career? Would people see me for the things I could do or would they see my limitations instead?

How was it that at eleven years old, I could already feel and describe the effects of ableism in my life? I believe it was because I never had a hero like me to look up to. I never saw myself in a Disney princess or in a superhero. I never saw myself in the dolls on the shelves at Target. Not in any advertisement. Nowhere. I thought I was the only deaf person on the face of the planet. You can imagine how lonely that feels.

All that changed the first time I came across a deaf character. I bawled for an hour straight. To sweeten the deal, the character was in the best series I had ever read. I was so happy that I couldn’t see the words on the page through my tears. Here was someone like me. For the first time in my life, I had a hero. For once—I didn’t feel so lonely. It was something that should have changed my life for the better.

Five pages later, the deaf character was killed.

That’s when a lot of things clicked for me. First and foremost, deaf people weren’t worth writing stories about. That was the only conclusion I could come to. Second, that meant I was worthless because I was deaf. Third . . . while it wasn’t the first time, I considered suicide.

All of these, of course, I now know to be lies. Deaf people, or a person with any kind of disability, are more than worthy to be in stories. My experiences prove that, in fact, it is a necessity to write stories with disabled characters. I firmly believe that if I had characters I could relate to and look up to, who were like me, I wouldn’t have spent years of my life battling depression.

Over the last several years I have been learning more and more about what it means to be disabled. I still feel new to all of this and I imagine some part of me will always feel that way because of how much there is to learn. Of course, I never would have had the courage to start this blog if it weren’t for a good friend of mine, Stephanie Hurzeler, who once said to me something along the lines of “Because you taught me so much about disabilities, I wasn’t so afraid when I got my own.”

So here I am, learning, and I hope that I can help you learn too. I want to give writers more tools they can use to include diversity and I want to give educators a place they can learn about disabilities to bring up the subject in the classroom. I can’t build a better world by myself. It’ll take all of us working together.

*As of May 23, 2021, I have switched to writing one post every other week instead of weekly. This allows me to have a better work-life balance, enable me to work on other writing projects while continuing to write quality blog posts for you. Thank you for your understanding and continued support!