Writing Disabilities, Part 4: Villains and Disabilities

Happy October Listen Up readers! It’s time to start getting ready for the holidays or, if you are a fellow writer, it’s time to prepare for National Novel Writing Month! To celebrate both of these, today’s blog post starts with a creative experiment! Take out some markers or colored pencils and a sheet of paper. Take five or ten minutes to draw a monster.

If you chose to skip the drawing, this experiment will also work with a monster you’ve seen in a movie, TV show, or book. Let’s begin!

Explain why the monster is a monster. What characteristics make it a monster? Is it the way it looks? The way that it is shaped? The way that it hunts? Write down why. Lastly, does your monster have physical deformities, scars, or any disabilities?

If you answered “yes” to the last question, you don’t need to feel guilty. The truth is the majority of people have been taught to associate disabilities with villains and monsters since the time they have been engaging in stories. The literary world has a longstanding trend to use disabilities or other physical differences as a way to highlight or reflect other negative characteristics, which may not be otherwise apparent in a character. Since we start to see this as kids, we end up learning to unconsciously associate disabilities with these villainous characters. As we get older, those associations become built into stigmas that surround disabilities today.

Let’s talk about a few examples. Think about your favorite stories as a kid. How many can you name that have physical differences to “mark” the villain? How many villains are mentally unstable or become unstable as the story goes on?

Scar from The Lion King and Captain Hook from Peter Pan not only have physical differences from the perfect-bodied heroes, they don’t even have a name outside of their differences. The Wicked Queen in Snow White takes becomes more and more mentally unstable as her efforts to kill Snow White are repeatedly foiled.

Another example is The Hunger Games. The villain in this series isn’t a specific person but rather a society. Throughout the series, Katniss meets several characters marked with disabilities, all or nearly all of them had their disabilities inflicted by evil acts of the Capital. Even though the Capital isn’t a person or disabled, readers are taught to associate the Capital with disabilities because it highlights the cruelty of the Capital.

Perhaps the greatest example I can give is the Star Wars franchise. Almost everyone associated with the dark side is disabled or has physical differences. Scars, deformities, missing limbs, mental disabilities, among many other examples. On the other hand, the Jedi and their allies, are always able-bodied. This ablest mindset is reinforced particularly when Obi-Wan speaks of Darth Vader. “He’s more machine now than man: twisted and evil.” This statement implies that Darth Vader is no longer a person because he has multiple disabilities and needs several pieces of assistive technology for his daily life. Secondly, it implies that he is not worth saving because of his disabilities.

What about Luke Skywalker? Luke, one of the main characters of the franchise, acquires a disability in Episode V. That’s where things start to get interesting from a literary analysis standpoint. Even though Luke is an example of a disabled hero, he appears completely able-bodied for the rest of the second trilogy. Furthermore, Luke became disabled because of Darth Vader. In other words, it is a case of the hero being permanently marked by evil. It’s not really disability representation, but rather meant to be a symbol of evil.

It’s a complicated subject and I imagine I will be writing a whole blog post series on Star Wars, especially because they have been trying to address the ableist nature of the franchise by bringing forth more characters with disabilities, such as in The Bad Batch and Rogue One.

Another way to look at the subject of disabilities and villains is with the nullification of disabilities theory. Disabilities are often seen as undesirable or as a weakness, which ends up being significant because villains are designed to lose. With the nullification of disabilities theory, we start to see how disabilities are used to play a role in power status.

An example is Azula from The Last Airbender. Azula is easily one of the strongest and most cunning characters on the show. However, the closer she gets to her goal to be the Fire Lord, she becomes more and more mentally unstable. In other words, the closer she gets to power, the more disabled she becomes. In the grand finale, Azula almost succeeds in killing two of the show’s main protagonists as a testament to how powerful she is. Azula, in her prime, I don’t think she would have been defeated by the good guys. But her mental health was disrupted to a point that she was making rash decisions in battle and over-committing to moves, which ultimately led to her defeat. Azula would not have been defeated unless she had a disability.

To summarize the basis: bad guys, or villains, have disabilities and/or physical differences. The good guys, or the heroes, are always able-bodied (some may say perfect-bodied). I recognize that part of this is due to beauty standards. A lot of people don’t see disabilities as something that can be beautiful. But most often disabilities or physical differences are used as a metaphor for evil. Especially mental disabilities.

This subject has affected me for a long time. Recently I was reflecting on my childhood and I recalled that I would often call myself names such as “mongrel,” “cursed,” “monster,” “half-breed,” and the like. I was at a critical point where I was beginning to build a larger awareness of my disability and becoming aware of how it made me different. I wondered why I was disabled. I wondered if I had done something bad in a past life, so I had to be punished. I wondered if my parents had angered God, so he punished them by cursing me.

Now that I am an adult, I understand that none of these things are true. But as a kid, I was building awareness of my place in the world. It’s natural to question why things are the way they are and sometimes we come to the wrong conclusion. My conclusions, as wrong as they were, were the only way that I could make sense of my disability with the knowledge and examples that I had seen demonstrated in the world around me. Disabilities were marks of evil. I was disabled, therefore, I must be the result of evil.

Monsters and villains, more often than not, are designed to create fear. I, for one, refuse to believe the best way to highlight negative characteristics is to rely on disabilities or physical differences to cue the reader to the presence of evil. It’s been a longstanding tactic for many writers, but it’s time to start addressing the messages these tactics are setting. It’s also not okay to use disabilities as character “flaws.” Disabilities run so much deeper than what you see. Disability is an identity just like skin color, religious affiliation, gender identity, or sexual orientation. It has history and cultures built around it. The experience of disability is unique from person to person as well. Even if the two people in question have the same disability, they will find unique ways to adapt.

As you go out shopping for Halloween costumes this year, take note of what costumes seem to emphasize physical differences. Are they imitating disabilities as something to inspire fear or suggest evil? Pay attention to movies and how villains are presented. Are they given physical differences or disabilities, whereas the hero is not? Being aware of these issues is the first step toward building a better representation, and therefore, a better future.

For further reading: here is a link to an awesome article that talks more about the harmful implications of tying disabilities to villains and other harmful forms of disability representation. I found it very informative.

What are your Halloween plans this year? Comment below and let me know! I have yet to decide on a Halloween costume myself.

Book Report: A Disability History of the United States by Kim E. Nielsen

Genre: Historical Nonfiction
Published October 1, 2013

Brief Summary
Kim E. Nielsen is a professor of disability studies and history. As a result, she wrote the first book to place the experiences of disabled people at the center of the American narrative. Encompassing pre-1942 to 2013, this book shows how disabilities have been a significant factor in the formation of the United States, its values, and how it formed democracy.

Good morning Listen Up readers! This week I’ll be wrapping up the “Disability History” series and beginning the “Writing Characters with Disabilities” series. Check out the archive for more information as well as other upcoming series.

I have briefly mentioned A Disability History of the United States in Disability History, Part 1. It is one of few books on the market about disability history. With that being said, it is a shorter book—only 187 pages, not counting the works cited or the index. Despite its small size, there is so much information in this book! If readers would like to continue learning about disability history, this is the book I would recommend. It covers from pre-Colombus to 2013 and includes Native Americans’ perspective on disabilities, what having a disability meant in the original thirteen colonies, the rise of institutions, the Civil War, the Industrial Revolution, eugenics, and the Disability Civil Rights Movement. In addition, this book not only talks about the impact of disabilities but also how the concept of disabilities have changed over time. This happens due to cultural changes, which I’ll talk about a little later in this post.

“A Disability History of the United States began with the argument that disability history is at the core of the American story. . . The experience of people with disabilities is pivotal to US history, just as the concept of disabilities is at the core of American citizenship, contested explorations of rights, racial and gender hierarchies, concepts of sexual deviance, economic inequalities, and the process of industrialization. There is no question that the power to define bodies as disabled has given justification, throughout US history, for subjugation and oppression.”
Nielsen, page 182

Knowing history is important, not only to teach to current and upcoming generations but also writers as they construct new worlds and culture. This is a mistake I see in a majority of stories. When writers create a world, there are often no disabled people or evidence of disabled people. Even worst, some stories state that all disabilities have been wiped out, which seems to be particularly common in science fiction. Even if all “disabilities” as we know and understand them today, are erased from existence, there will always be other disabilities that arise in their place. This is because disabilities are created by social and cultural means. An example I have used before: are wheelchair users disabled by their chair? Or are they disabled by a culture that relies on stairs? Most wheelchair users see their chairs as an extension of their body. It allows them to be free and independent, like wings that allow birds to fly. To non-disabled people, however, a wheelchair seems like a limitation.

Disability history provides a blueprint for writers, as history is a series of cultural changes. What I mean by cultural changes are events that affect, alter, or shift a culture. For example, whenever there is war there is a significant increase in people with disabilities. If a writer is working on a story that involves warfare, then naturally, disabled characters should be included. Another example of a cultural change is the industrial revolution, which left behind a huge wake of disabilities. Due to poor manufacturing processes and a severe lack of safety regulations, many factory workers lost fingers, limbs, lives, or received other injuries. Once a worker became disabled, they were seen as “defective” and promptly replaced. These disabled workers had trouble finding jobs and providing for themselves because of the stigmas attached to disabilities, which leads me to my next point.

“Given that disability was defined as the inability to labor, white women, free African American women, and slaves came to be associated with the disabled.”
Nielsen, page 56

The values of a culture will be reflected in how people with disabilities are treated. For example, one of the most important values in American culture is independence. When it comes to disabilities, not everyone is completely independent, thus this is one of the reasons why the disabled community has faced so much discrimination. This causes a culture clash, so there is a divide between independent Americans and interdependent Americans. Another great example of cultural values comes from the early immigration era (roughly 1870 to 1924). During this time, immigration to America was at an all-time high. But Americans only wanted American-like people coming in. This meant that people were being turned away for their skin color, their religion, their body shape (such as too tall or too short), being too old, for being poor, being suspected of a disability, among other things. Ellis Island (an immigration station where officials decided who could enter the country and who would be deported) was designed to be as inaccessible as possible. Steep, narrow stairs and pathways would test immigrants physically. If an immigration officer saw an immigrant struggling with stairs or running out of breath, they would be marked to be deported.

“When [President] Coolidge proclaimed that ‘America must be kept American,’ he had a very specific American body in mind.”
Nielsen, page 110

Cultural values about independence and disabilities can also be found at the heart of discrimination against people of color.

“The racist ideology of slavery held that Africans brought to North America were by the definition disabled. Slaveholders and apologists for slavery used Africans’ supposed inherent mental and physical inferiority, their supposed abnormal and abhorrent bodies, to legitimize slavery. Indeed, slaveholders argue that the bodies and minds of those they enslaved were disabled to such an extent that slavery was a beneficial kindness owed to those in need of care. Disability permeated the ideology, experience, and practices of slavery in multiple and profound ways.”
Nielsen, page 42

The concept of disability applied to women as well, who were thought to be too weak and feeble to labor. Nor were they thought to be mentally capable of making educated decisions or allowed to vote.

Traveling back to the foundation of the United States; disability, like skin color, was a determining factor in whether or not a person could be a citizen of the new nation. This idea was challenged by the Revolutionary War, which left several disabled people in its wake. Thus, people who fought for the nation were no longer considered citizens, so disability had to be reevaluated. Any veteran with a disability would be a full citizen and had the right to vote. But if someone was born with a disability, they were not eligible for these things. This divide in particular says so much about America because even today, someone who becomes disabled as a result of warfare is treated differently than someone who is born with a disability or becomes disabled as a result of an accident.

This especially comes out in elections. When a politician has served, they will never fail to mention their service—particularly if they have a disability from it. But, at all other times, they will refuse to be seen as disabled. Like George Washington said during a campaign speech, “Gentlemen, you will permit me to put on my spectacles, for I have not only grown gray but almost blind in the service of my country” (77). His blindness served as a marker of his nobility and worthiness to be president, but for any other man, blindness would be seen as a defect.

George Washington is not the only president to have a disability. Franklin D. Roosevelt, who had polio that paralyzed his legs, needed to use a wheelchair. However, for speeches and other events, he walked short distances with the use of iron braces (hidden under his pants) and a cane to hide his disability from the public. He was particularly careful not to let the media photograph him with his wheelchair, as that would “damage” his image. Today, there are only a small handful of photos that exist of Roosevelt with his wheelchair. In photos where he is not sitting, you can see that he holds onto other objects or is supported by the arm of a family member.

All of this is but a scratch of the surface of what A Disability History of the United States has to offer.

So, to briefly summarize world-building for disabilities; look at the culture of the story and circumstances that affect it. If there is industrialization, slavery, warfare, poor or limited medical access, lots of illness or spreading of diseases, or high crime, there will be lots of disabilities. List the society’s main values. What do these fundamental values tell you about society? If society values things like independence or the ability to fight, what does that mean for disabled people in your world? What happens to people if they don’t meet the status quo? Who is considered a citizen or how is citizenship obtained? Are there divisions in disability, like the divide between disabled veterans and disabled people?

What does the architecture of your world say about disabilities? Are buildings and streets accessible? Are doorways wide enough for a wheelchair or someone on crutches? Is there sign language or closed captions for those with hearing disabilities? If the culture has rights for disabled people—how did they get them? If your world is missing people with disabilities, then where are they? Are they segregated or placed in institutions? What does that segregation tell you about society’s values?

Try to think about disabilities as a result of cultural circumstances and reflections, rather than as just a singular, individual character. If your society is progressive and has rights for disabled people, then there must be a disabled community to reflect disability pride. Even though I was born deaf, I didn’t grow as a disabled person until I started connecting with other deaf people. This is a common story in the disabled community. When disabled people can connect with other disabled people, it is like a spiritual experience. You can share your struggles with people who understand exactly what you are talking about, and oftentimes, you’ll hear things put into words that you’ve always known, but have never been able to explain. The disabled community is incredibly important to help characters grown.

The reason I mention the disabled community is I’ve seen quite a few situations where a writer composes a society that is discriminatory against disabilities (by clues like inaccessible architecture, exclusion/segregation, or the general attitude) but has a disabled character who is confident and bright in his/her disability but has never met another person with a disability—it comes off as not realistic. If a person is told their entire life that they are worthless, which is reinforced in so many subtle ways, it doesn’t make any sense for them to develop confidence in themselves without outside influence. If you are having trouble grasping this, flip the example to a different minority. If a black character grows up in a society that recently believed colored people should be slaves, it makes no sense for him/her to become self-confident in who they are without a reason. They likely have to act in certain ways and follow certain behavior guidelines, because being too confident or acting out of the ordinary, or behaving in any other way that society deems as “wrong,” can get them hurt or killed. It’s the same for those with disabilities.

“US disability history is not only the history of people with disabilities. Whether one’s life is shaped by able-bodiedness and the economic and legal advantages that issue from that, or by the economic and legal implications of disabilities’s long-stigmatized past, disability, both as lived reality and as concept, impacts us all. . .
“The story of the US nation is a contested, sometimes vicious, sometimes gloriously marvelous story of creating a national home. People with disabilities have been and will continue to be an integral part of that story. It is my home, our home, and your home.”
Nielsen, page 182-183

In short, this book does a fantastic job at tackling historical silencing and bringing awareness to the fact that America has been built by people with disabilities just as much as any other minority group. It is a great resource for writers who want to learn more about culture and what kind of circumstances or cultural changes are realistic for portraying characters with disabilities in building other worlds.

Did you like today’s post? Was it helpful to you? Leave a like or comment below to let me know!

Book Report: All the Way to the Top by Annette Bay Pimentel, Jennifer Kellan-Chaffins, and illustrated by Nabi H. Abi

Genre: Children’s Nonfiction
Published March 10, 2020
2021 Schneider Family Book Award Young Children’s Honor Book (American Library Association)

Brief Summary
Jennifer has been a disabled rights activist from the age of six years old. It started when she wasn’t allowed to go to school, then when she could go to school, she was barred from eating in the cafeteria with the other students. She wanted to make the world a better place and starting joining protests, leading up to the Capitol Crawl which was the protest that forced the signing of the Americans with Disabilities Act (ADA). Follow Jennifer on her true story to crawl all the way to the top!

Welcome, Listen Up readers! Thank you for your patience as I wasn’t able to post last week. I was super excited to introduce this book about the Capitol Crawl on March 13, the thirty-first anniversary of the event. Even though I missed the deadline, I’m still excited to share this book with you! All the Way to the Top is written by Annette Bay Pimentel, a forward by Jennifer Keelan-Chaffins, and illustrated by Nabi H. Abi. This book tells the true story of Jennifer Keelan-Chaffin and her involvement in the Capitol Crawl. The Capitol Crawl was a disability rights protest that took place on March 12-13, 1990. Over 1,000 people took part in the march from the White House to the U.S. Capitol to demand that the government pass the Americans with Disabilities Act (ADA), which would establish civil rights for people with disabilities.

At the foot of the Capitol, several of the protesters dropped their crutches or slid from their wheelchairs to crawl up the steps. For some, it took the entire night to crawl up the steps. It was a physical demonstration of inaccessibility in action that showed exactly why the ADA was needed. People with disabilities were discriminated against in employment, in education, in public services, and even in architecture—all because they were left out of the civil rights act of 1964.

The Capitol Crawl forced the hand of the government and the ADA was signed within four months. But the protest may not have achieved its end goal without Jennifer. Some protesters suggested that Jennifer not do the crawl, as images of a child crawling up the steps could incite pity rather than serve as a call to action. All the Way to the Top follows Jennifer’s journey in experiencing discrimination, learning about the Disabled Civil Rights movement, becoming an activist herself, and finally, her participation in the Capitol Crawl.

On the day of the protest, Jennifer felt a sense of duty. She needed to crawl up the steps for all the kids like her. For all the kids who were barred from school. For all the curbs that prevented her from going places. So she got out of her wheelchair and made for the steps. She accidently cut her lip on the first step. The news crews who were filming the protest turned the camera lens to Jennifer. The image of an eight-year-old girl with cerebral palsy, bleeding, slowly fighting her way up 365 steps to advocate for her rights and other children, was shown all across the country. It was that image that finally pushed congress into passing the ADA. You can hear Jennifer talk about her experience here on Youtube.

The ADA changed the world for people with disabilities. Architecture was required to be accessible, so curbs were cut and textile markers were laid down. Buildings were required to have wheelchair ramps and elevators. It was illegal to fire someone or refuse to consider them for a job if they had a disability. Handicap buttons were installed to open doors. Braille was added to signage. Schools especially had to be made accessible too.

While for most of my life I’ve been completely oblivious to the fact, I’ve benefited from the ADA in many ways. When I went to school, making sure that I had appropriate accommodations was a big deal. I was given a seat at the front of the classroom so as to have a good view of the teacher’s lips. I also had a neck loop system, which linked my hearing aids directly to a microphone the teacher had pinned to her shirt. It also included speech therapy. Parent-teacher conferences were follow-ups on how my accommodations were working out. Now that I am in college, I have transcribing—meaning a person is in the room typing up everything that is being said for me to read on an iPad at my desk. There is a bit of a delay between something said and when I get to “read” it so it is not perfect, but it works for me a lot better than a neck loop. I honestly don’t know how I got through school without transcribing.

Without the ADA, I likely wouldn’t be allowed to go to school or college. I would have a hard time finding employment. A lot of businesses and services would turn me away simply for being disabled, such as the gym, the bank, my karate studio, and even busses could deny passage for a disabled person.

Reading with a couple of my nieces and nephews

When my nieces and nephews are a little older, I’m excited to share Jennifer’s story with them. They are not quite ready to graduate from board books yet, but they’ll be there soon. My feeling about this story and all of its beautiful illustrations can be summed up in a quote from the foreword of the book:

“I recognized that I had a very important responsibility placed upon me. I wasn’t just representing myself, I was representing my generation and future generations of children with disabilities who also felt left out as they struggled for the same rights as everyone else.”
Jennifer Keelan-Chaffins, Forward of All the Way to the Top

It is our responsibility to teach the next generation to continue to fight for a better world and for better rights. For me, I feel a sense of purpose that I’m suppose to help educate others on the subject of disabilities. Everyone benefits when we focus on making the world accessible to a wider range of people.

All the Way to the Top is available on Amazon.

What are some accessibility requirements that you’ve experienced or noticed in the world around you?

Disability History, Part 1

Understanding the word “Disability” and where it comes from

Historical silencing is a term that refers to the dominating narratives that reinforce the power of dominant groups in a way that the contributions of lower-powered groups are ignored and silenced. As the common saying goes, “history is written by the victors.” Historical silencing shows up in ways like how most Americans can name Christopher Columbus as the man who “discovered” the Americas, but they cannot name the tribes of people who were here first. Another example of historical silencing exists in how the contributions of women have been ignored for centuries and have only recently begun to come to light. There is perhaps no group that has experienced more historical silencing than the disabled community.

Disability history may not seem like an important subject to study, but the truth is that the concept of disabilities has shaped the world in more ways than it is possible to name. For example, disability drives human invention. The first telephone was invented by Alexander Graham Bell as a stepping stone in trying to create a hearing aid. Texting was engineered for deaf people but quickly became popular among everyone. But disability has also inspired wars. Like in the case of Adolf Hitler, who killed more than 275,000 people with disabilities in 1939. It was this act that allowed him to expand his agenda to the murder of millions of Jews.

But the most important point about understanding disability history is that it ties into the history of so many other forms of discrimination. Ableism, the discrimination based on ability, is the root of sexism, genderism, ageism, and racism. I talked about this idea a little in Defining Disabilities, Part 1. Women were once considered physically and mentally inferior to men. Similarly, people of color were seen as intellectually disabled but physically superior. This allowed slavers to say that slavery was a kindness by providing work, shelter, and food for the “savages.” While a lot of progress has been made, there are still people who believe these groups are mentally or physically inferior. In other words, these groups are seen as disabled because of certain factors such as skin color or body type. If we, as a nation, wish to progress past discrimination based on race, religion, gender, and age, we must first overcome discrimination based on ability.

I will be the first to admit that I don’t know much about disability history. Three years ago, I didn’t know it was even a thing until after I took a critical literary studies class which introduced me to disability studies. From there I slowly began to learn more and more disabilities. I started learning about the Disability Rights Movement for the first time. I read about the protests. I read about the people who had come before me and fought for me to have the life I have today. It’s been a very personal and emotional journey in discovering my heritage. This is a classic case of historical silencing because there are so few that know this subject and there is no telling how much history is missing. While I may know but a scratch on the surface, I know more than the average person and I’m continuing to learn each day.

The beginning of disability history begins with a single word, both literally and metaphorically. As language is a reflection of the values and perspective within culture, understanding the origins of “disability” provides insight on when the divide between “us” and “them” begins. The word came about in the 1570s, literally meaning “incapacity in the eyes of the law.” The 1500s was also a time of exploration when European countries were establishing colonies around the world. It was no coincidence that “disability” arose from this period.

To give some background on this area, colonialism brought forth a new age as cultures and people were able to interact in ways that were previously impossible. There was a new need to study other cultures and to understand them in order to build trade relations and communicate. That’s when the science of anthropology began. Today anthropology is a important field of study, but it had dark origins.

Colonialism, in a nutshell, was about exploiting other people, their land, and their resources. Anthropology was used to justify taking over these lands. For example, the leading anthropological theory of this period was unilinear cultural evolution, or that all societies and cultures develop on the same pathway. This path had a series of stages from “savagery” to “barbarianism” and finally, to “civilized.” Of course, the Europeans thought of themselves as being at the top of the scale. Using anthropology, they rationalized that they were doing a service by conquering other people. As the highest evolved form of humanity, God wanted the Europeans to take advantage of these opportunities or so they believed. Victims of colonialism were forced to destroy their lands to grow cash crops and enact European customs and ideals. This is how people started being classified based on their skin, abilities, and way of life.

Outside of the European expansion, finding a language with a word that meant “disability” is rare. This does not mean other cultures didn’t have persons with disabilities, but rather that these cultures acknowledged the differences and accepted them without a second thought. For example, Native American tribes did not have a word meaning “disability.” Part of their beliefs centers on the idea that each individual was born to fulfill a specific purpose. So if a child was born with a mental or physical disability, but found they were an excellent water carrier, then that is what the Gods meant for them to do. The child was not seen or labeled as disabled.

This example is from A Disability History of the United States by Kim E. Nielson. Books on disability history are rare and I was fortunate enough to read this while taking a class on anthropological theories. This book has taught me more about disability history than any other source to date. It shows how much of history has been shaped by disabilities but has been silenced.

Understanding the origin of the word “disability” and that it is not, in fact, a common term we can conclude that it was used to classify people in order to establish a hierarchy. In the coming weeks, I will be talking about different events and impacts that disabilities have had in the past and continue to impact us today. I will also talk about events that I have been lucky enough to witness within my lifetime.

Historical silencing is alarming, appalling, and daunting. In the midst of silence, people don’t know what or how much is missing or lost. It is my hope that this blog series will help shine a light for teachers on how important disability history is to include in the classroom and to help writers learn more about what sort of circumstances cause disability, how it impacts society, and provide further insight into the disabled identity.

Did you enjoy this blog post? If so, leave a like or comment below! In addition, if there is a topic you would like to see covered in a future blog post, you can send me a message on the contact page.

Book Report: Disability Visibility by Alice Wong

Genre: Adult Nonfiction
Published June 30, 2020

Brief Summary
Disability Visibility is a short story anthology by people with disabilities, published a few months before the thirtieth anniversary of the Americans with Disabilities Act which established civil rights for those people disabilities. It is a celebration of what it means to be disabled and does not shy away from difficult topics. It gives a glimpse of the rich complexity of what it means to be disabled. It also provides a huge list of works by people with disabilities for further reading including podcasts, blogs, essays, videos, websites, poetry, other anthologies, fiction, nonfiction, and more.

Warning: Spoilers Ahead

Hello Listen Up readers! Welcome to another book report! In last week’s article I talked about the disabled identity and what it means to be disabled. To go along with that, today I will be talking about Disability Visibility edited by Alice Wong. This is a powerful book of stories by people with disabilities about what it means to be disabled. When I started reading, I had a brand new highlighter in hand. By the time I finished the book, my highlighter was dead. There is not a single page of my copy without highlighting, underlining, or writing in the margins.

“To my younger self and all the disabled kids today
who can’t imagine their futures.
The world is ours, and this is for all of us.”
Alice Wong, Dedication of Disability Visibility

It was difficult to narrow down all the stories to a selected few I could talk about in a single blog post. This book does not shy away from difficult topics such as eugenics, infanticide, abortion, assault, erasure, language deprivation, among others. Content notes are provided at the beginning of each story so that readers can choose whether or not they want to read the story.

One of my favorite stories in this collection, “Unspeakable Conversations” by Harriet McBryde Johnson, is also one of the most powerful. It is the first story in Disability Visibility for a good reason, it changes the reader’s perspective toward disabilities. The story follows Johnson, a disability rights lawyer, as she participated in a debate with Professor Peter Singer, a popular modern philosopher who argues for infanticide and assisted suicide of people with disabilities. I could not imagine being put in a position where I have to argue for the right to exist as a deaf person. As Johnson says, “a participant in a discussion that would not occur in a just world” (17).

“Preferences based on race are unreasonable. Preferences based on ability are not. Why? To Singer, it’s pretty simple: disability makes a person ‘worse off.’
“Are we worse off’? I don’t think so. Not in any meaningful sense. There are too many variables. For those of us with congenital conditions, disability shapes all we are. Those disabled later in life adapt. We take constraints that no one would choose and build rich and satisfying lives within them. We enjoy pleasures other people enjoy and pleasures peculiarly our own. We have something the world needs.”
Harriet McBryde Johnson (10-11)

Johnson went to the debate to provide a different perspective and hope that she could show the students who attended the debate that people with disabilities were people just like them. But Johnson also faced backlash from the disabled community. Some were upset that she agreed to do the debate at all, as being seen with Professor Singer could be interpreted as endorsing his ideas of genocide. Disabilities get so little representation, thus every representation is important and powerful so that is why some people are so critical of Johnson’s actions.

Johnson’s story shines a light on the modern debates taking place today. It is a real question whether or not people with disabilities will be allowed to continue existing in the future. If my deafness was detected before I was born, would my life have been nothing but a statistic? Would I have been “put out of my misery” before I had the chance to live a fulfilling life? Yes, living with a disability means living in a world that doesn’t want me. But living with a disability doesn’t automatically mean that I cannot live a wonderful, fulfilling life and positively impact and contribute to the world.

The second story, “How to Make a Paper Crane from Rage” by Elsa Sjunneson is a story about rage, something that is near and dear to my heart. When I was a teenager, I had a problem with managing my anger. My parents forced me to go to a therapy place near our house. I made little progress. Within a year and a half, I had already been passed through three different therapists. If anything, I got better at hiding my emotions and dodging questions I didn’t want to answer. My fourth therapist, however, had an advantage the others didn’t. She had previously worked with deaf kids like myself.

I remember my first meeting with her and the awkward silence as she flipped through the pages of my file, reading about all my shortcomings and flaws from past therapists who gave up on me and passed me to the next person. At last, she shut the file and tossed it aside.

“You’re fine.” She said.

“What?” I was confused.

“You’re fine. You have every right to be angry.”

I had never in my life been permitted to be angry. It was so profound and so unexpected that I began to cry.

She explaining that anger was a normal part of being disabled. How the world is unfair to us and that the constant fighting to be heard and to be seen builds up. Every deaf person she had ever met had “anger management issues” but in reality, we had every right to be angry. She continued on and on, putting things into words I had always known but couldn’t explain. How was it that an able-bodied stranger knew more about being deaf than I did? She went so far as to encourage me to be angry.

“There’s something horrifying about realizing people don’t see you as an adult when you are in fact an adult. There’s something angering about it, too, that people assume based on the kind of body that you live in, or the sort of marginalization you carry within yourself that you can be an adult only if someone helps you.”
Elsa Sjunneson (135)

Getting that permission to be angry, to be told that it was okay to be angry and that I should be angry, changed me. I started getting better at managing my anger because I understood where it was coming from. In addition, my therapist got me involved in a local deaf basketball team. It was a life-changing experience for me because it was the first time I ever got to be surrounded by people like myself.

This rage is what “How to Make a Paper Crane from Rage” is about. Rage is common among those with disabilities. I would say it is a part of the disabled identity. We are angry at the social discrimination that we face daily. We are an angry people because society expects so little from someone with a disability that we aren’t expected to achieve anything. We are angry because we are kept isolated. This story puts so many aspects of this rage into words.

But rage also gives us power. Rage helps us push back against barriers and provides fuels our fight for a better world. It helps us to be resilient and encourages creativity. While I no longer struggled with my anger in the ways that I used to, I found new ways to use it. This blog, for example, rises from a place of personal rage over the lack of representation in literature and the lack of discussion about disabilities in the classroom. In other words, when a person has a disability it is not only important to be angry, but a necessity.

“I burn brightly with my rage and I show it to the world when it suits me, when it’s appropriate. When the world needs to know I am angry. . . . my rage isn’t a fire stoked by those who would harm me—it’s a fire fed by social discrimination, by a society not built to sustain me. . . . a disabled person has a right to be angry, not just at the specific blockade in their way but at a society that creates those blockades.”
Elsa Sjunneson (138)

The last story I have time to talk about is “Why My Novel is Dedicated to My Disabled Friend Maddy” by A. H. Reaume, who discusses many of the barriers in publishing and writing that disabled writers face. It is common knowledge that there is a severe lack of disabled voices in the world of literature, despite the fact that more than a quarter of the population of America identifies as being disabled. Why is it that these voices are not being recognized?

Reaume was finding it difficult to finish her book as her disability meant staring at a computer screen took all mental willpower and focus. If she printed out a manuscript and edited it, she then had difficulty in switching back and forth from the paper to the screen. It seemed impossible to finish her book. Then she met Maddy, who was also recovering from a brain injury and needed some work. The partnership that stemmed between the two allowed Reaume to complete her book, highlighting an important point; many disabled writers don’t have the assistance they need to physically finish a book on their own. “Why My Novel is Dedicated to My Disabled Friend Maddy” talks about the need for interdependence and further explains why there aren’t more books by people with disabilities being published.

“Independence is a fairy tale that late capitalism tells in order to shift the responsibility for care and support from community and state to individuals and families. But not everyone has the personal capacity, and not everyone has family support. And the stories we tell about bootstraps tell us that it’s the fault of an individual if they don’t thrive. They’re just not trying hard enough.
“The myth of independence also shapes what literature looks like and what kind of writing is valued. . . The story of disabled success has never been a story about one solitary disabled person overcoming limitations—despite the fact that’s the narrative we so often read in the media.”
A. H. Reaume (155-157)

Publishers often refuse works by those with disabilities because they think that disabilities are unrelatable so that the book won’t sell. Or they think the market is too small for stories about disabilities. In addition, works by disabled authors may have more rough edges as in the case of Reaume. This also causes editors move on because they aren’t willing to put in the extra work required. But the fact remains that there need more stories told by disabled voices. Our stories are relatable and they are important.

There are so many more wonderful and powerful stories in Disability Visibility. I almost decided to make this a two-part blog post. I didn’t get a chance to touch on the intersectionality that is also part of the collection. There are stories about being black and disabled, being queer and disabled, how religious practices can cause conflict with a disability, and the subject of heritage. The three stories I have discussed are only a scratch on the surface of all Disability Visibility has to offer. This collection shines a light on the disabled experience that the media doesn’t portray or get discussed in classrooms. So many of these stories moved me to tears as I found a part of myself reflected on every single page. I have never heard so many different disabled voices in a single place.

Utah Eagles of the Utah School for the Deaf and Blind
I am number 42, top left and sitting behind Coach

It reminded me of the days on my deaf basketball team when I was surrounded by others like myself. My team was able to fly to Washington state for the West Regional Basketball Championship to compete with other deaf teams from across the western United States. It was amazing. The houses we stayed in had lights that would flicker when someone rang the doorbell. The crowds would stomp their feet so hard when someone made a basket, the court floor felt like it was a trampoline. Some teams had drums too that they would bang so loud, I was forced to turn my hearing aids off. And everywhere I went, there were deaf people too. All the restaurants nearby were used to communicating with deaf people and there was no trouble in communicating our orders. It was as wonderful as it was overwhelming. I spent the whole first day in a daze of culture shock.

That’s the experience I had while reading Disability Visibility. I still feel that I have so much more to learn about myself and my disability, things that I never had the chance to learn in school or were missing in books. Disability Visibility showcases so much about what the disabled identity and the disabled experience is. It talks about so many things that made me angry, sad, and happy. It was an empowering read. This is one book that I highly encourage readers to add to their reading lists, because unlike most media, this portrays the reality about what it means to be disabled.

Is Disability Visibility part of your reading list? Is there another story about a person or character with a disability that you love? Leave a like or a comment and let me know!