Movie Report: Netflix’s The Dragon Prince

Genre: Children’s fantasy animation
Released September 2018 – current (the fourth season is expected to be released later this year or early in 2022)
Rated PG

Brief Summary
The world of Xadia is divided between the humans, who practice dark magic, and the elves, who use primal magic. The border between them is protected by the King of Dragons, whose only egg was destroyed years ago by the humans.
Callum and Prince Ezran find the last dragon egg and set out on a journey with elf Rayla, to return the egg to the Dragon King and restore peace to Xadia. But there are many who do not want them to succeed and do everything they can to stop them.

Credit: Netflix

When I was about ten years old, I set out on a quest to find a book with a leading deaf character. I didn’t want just any random book. I specifically wanted a medieval fantasy story, with a female, deaf knight, and involved dragons. I was so determined to find this story that I got up the courage to ask the school librarian for help. We didn’t find anything available in the library, so I looked on the internet, which also had nothing. I came to realize that if I wanted to read a story about a deaf knight and dragons, I would have to write it.

Well, that all changed when I got to watch Netflix’s original series The Dragon Prince, which has General Amaya, one of the highest-ranking military official in Katolis, entrusted with guarding the human side of the Border, sister of the late Queen Sarai, Aunt to two of the show’s main protagonists Callum and Ezran, and who happens to be deaf and uses American Sign Language (ASL) to communicate.

General Amaya, front and center, with her trusted advisor Commander Gren (left) and her nephew Callum (right). Credit: Netflix

Getting my childhood dream at the age of twenty-two, you bet I cried. While it wasn’t the first deaf character I have come across, General Amaya was the first portrayal of a deaf person in a position of power and who plays a big role across the story that I have experienced. In general, the whole show is amazing on so many levels. It was literally designed to push for diversity and representation. For that reason alone, it comes across as special and meaningful because so many minorities are being represented at once—and in positions of power! You have LGBTQ+ queens and assassins, so many powerful female leaders, and people of color by the dozen (among both elves and humans).

Not only is General Amaya deaf, but she uses real sign language—like proper grammar and everything. It’s not just a few token signs to help sell the part. And—something else that is noticeable—when she speaks, there are no subtitles to translate what she is saying. You have to know sign language to understand. I think this choice has a powerful impact because it allows the audience to see her differently. Plus there are some hilarious jokes you’ll only catch if you know sign language.

I did some more research into this. The ASL was so good, I wanted to know if there was a deaf person involved in the creation of this character. It turns out that one of the show’s co-creators, Aaron Ehasz, asked the question “What if [General Amaya] is deaf?” Ehasz also worked on another famous show Avatar: The Last Airbender, and is responsible for the tough-loving, sassy Toph, a blind earthbender. In creating General Amaya, Ehasz and the other producers reached out to several Deaf and Hard-Of-Hearing organizations, met with several deaf people, and worked with several ASL interpreters to make sure Amaya’s signing was authentic.

General Amaya is also in a position of power—one of the King’s most trusted advisors and one of the highest-ranking Generals in the Katolis Army. Serving in the military alone is something extremely meaningful and powerful for the Deaf and Hard-Of-Hearing community. In America, disabled citizens are not allowed to join the army or serve in any related military role. Now, that might come off as strange to you and maybe you can think of a few examples of disabled veterans who are actively working in the military. That’s because the US military has a loophole. If a soldier in the military acquires a disability during active service, the military will make all accommodations necessary for them to continue doing their job. So there are people with disabilities serving, but only able-bodied people are allowed to join.

“If the US military can retain their disabled soldiers, why can’t they accept disabled citizens?”

Keith Nolan

This becomes even more questionable when looked at from a global standpoint. America is one of a small handful of countries that do not allow people with disabilities to serve, in contrast to the rest of the world where they are allowed and even encouraged to serve. Or, if you look at this issue from a historical standpoint, there have been deaf soldiers serving in every single war in US history up thru WWII.

Credit: Keith Nolan

Keith Nolan, a deaf man and a teacher at the Maryland School for the Deaf, has been fighting for years to get the military to open for the Deaf and Hard-Of-Hearing. He participated in an ROTC program for two years and was able to earn the rank of a cadet private before he was barred from advancing any further simply because he was deaf. Nolan also traveled to several other countries to interview deaf soldiers actively serving in military roles and wrote a 98-page paper on why the Deaf should be allowed to serve.

“If you remember back in US history, African-Americans were told they couldn’t join the military, and now they serve. Women as well were banned, but now they’ve been allowed. The military has and is changing. Today is our time. Now it’s our turn. Hoorah!”

Keith Nolan

Nolan’s activism was successful up to the point that a bill, named after him, was drafted and sent to congress. The bill would open up a test program for the Deaf in the Air Force. If it went well, it would open the doors to regular service and test programs in other branches of the military. Unfortunately, the bill suffered from bad timing. Obama was a big supporter of Nolan, but the bill didn’t reach congress until Trump was in office. Trump has never been supportive of disability civil rights. Thus the bill ended up getting swept under the rug.

The topic of deaf in the military hits home for me. I remember the first time I was ever asked the question “What do you want to be when you grow up?” I was in kindergarten and still learning how to write. All the other kids were writing down that they wanted to be doctors, lawyers, firefighters, veterinarians, but I decided I wanted to be a soldier. I still have that assignment tucked away in one of my memory boxes.

It’s not something I talk about a lot. I used to tell people that I wanted to be a soldier, but apparently, I have such a reputation for being kind, that my friends and family laughed at the idea of me being a soldier. Growing up, it never crossed my mind that I wouldn’t be allowed because I was deaf. When I was seventeen years old, I started doing more research as I knew there were early military programs for high school students. That’s when I found out that I would never even been given a chance. That put me in a dark place for a long while. But I still hold out hope that things will change and maybe I’ll still have the chance.

To learn more about Keith Nolan’s story, you can listen to his TEDtalk, check out his website, or read more about the Keith Nolan Air Force Deaf Demonstration Act of 2018.

Coming back to The Dragon Prince, that’s one of the reasons that General Amaya is such a powerful representation. She is an example of something the Deaf community is actively fighting for. She represents hopes and dreams and inclusion and recognition.

Now, I wish I could leave this blog post at that, but if you recall my last blog post, I introduced my own literary theory about the nullification of disabilities. As much as I hate to throw General Amaya under the bus, she does fall prey to this.

General Amaya is introduced to viewers as a nonverbal character, meaning she relies on sign language for communication. So either people know sign language to communicate with her, like her nephews Callum and Ezran, or as it turns out, she has an interpreter, Commander Gren, to communicate with those who don’t know sign language. Everything is great.

That is until General Amaya assigns Gren to stay at the castle and keep an eye on Viren, while she goes on to check the border. Now, of course, deaf people do not require an interpreter at all times. There are plenty of other ways to communicate. The issue with this is that the writers didn’t show how Amaya communicated without an interpreter. Do her soldiers all know some sign language and that’s how they communicate? Is there another interpreter? General Amaya is in a powerful position where she is communicating with others all the time. By removing Gren and not showing how she communicates otherwise, it ends up nullifying her disability by refusing to acknowledge and respect the limitations of her disability.

Commander Gren signing with General Amaya, Credit: Netflix

Unfortunately, it gets worst. After she leaves Gren, she seems to gain the ability to lipread everything. There are scenes where Amaya is in a room full of people speaking verbally and she follows the conversation without any questions.

I have said it before and I’ll say it again, lipreading is extremely inaccurate! Lipreading at best—at best—can give you 30% of what someone says, depending on the language. If it is a tonal language (meaning words change based on the tone of voice, such as with Mandarin), you’ll get even less. In addition, lipreading has so many factors—how expressive someone’s face and body is, how fast they talk, if they mumble their words, and we haven’t even gotten to accents yet or being in the right mindset to lipread. Lipreading is exhausting work. I’ve had times where I am so tired at the end of the day, trying to lipread is like trying to understand a foreign language. When I reach this point, I say “I can’t understand English right now.” People laugh at that because they think I’m being funny, but really, I’m being serious. Basically what I’m saying is relying on lipreading alone is the crappiest form of communication on the face of the planet. It only works when it is put together with other things—like knowing the context of the conversation.

Yet, General Amaya doesn’t seem to have any of these issues. But wait—it gets worst (again). In Season 3, General Amaya is taken captive by Sunfire Elves. Now, the elves have a completely different set of cultures and languages than humans do. Yet, despite having no experience with elvish dialects and accents, General Amaya seems able to lipread most of what they say. Not all of it though, as they do bring in a non-native sign language interpreter into the story when they are interrogating General Amaya in a ring of fire.

To draw from my own experiences, I have a lot of opportunities to work with people who speak Spanish as a first language. In some cases, I have worked with the same people for years and let me tell you, even though I’m familiar with the Mexican accent, I struggle to lipread it. It’s like trying to lipread a foreign language. That’s why I’m saying General Amaya being able to lipread the Sunfire elves doesn’t make sense. These elves have a completely foreign accent and English is not their first language, so it doesn’t make sense that she can lipread what they are saying. In addition, she is not always at her best. In the ring of fire scene I mentioned above, she’s weak and beaten down, which would affect her ability to lipread in the first place because it takes so much mental effort to try to piece together what someone is saying even under fair conditions.

So in short, General Amaya, as awesome as she is, is a good example of nullification by refusing to acknowledge and respect the limitations of a disability. When the limits of a disability are not respected, it ends up reinforcing stereotypes. In this case, it encourages the myths that lipreading is 100% accurate and that all deaf people have an innate ability to lipread. These myths, which are already common beliefs among able-bodied people, then affect the lives of deaf people. I hate it when people just expect me to lipread what they say and refuse to listen to the accommodations that I actually need to communicate. Like when I ask for something to be written down, they refuse and point at their mouth and keep repeating what they say. In other cases, I’ve had people grab me, pull me into their face so that they speak directly into my hearing aid as if that’s going to make things clearer. It’s frustrating and uncomfortable. But it’s also frustrating because I can’t fault others for doing this as they have never been taught otherwise.

With all that said, I still love General Amaya. She is my favorite character in the series and it is so cool to see how much she is involved in the story! She’s not some token side character. She’s almost a main character at this point. I will never forget the moment that I first saw her appear on screen, the way I did a double-take when she started signing, the way the realization hit me, and the tears started flowing—this is the story I’ve been waiting for my whole life to hear, the story I’ve been looking for since I was ten. She is such an amazing character, representative of so much more than just being deaf, and her signing is authentic ASL. Her portrayal is not perfect, as I pointed out the issues with her lipreading, which leads to the nullification of the disabled experience and which directly impacts people’s perceptions and understanding of disabilities. Because like it or not, most people are introduced to disabilities through a screen, that’s why increasing accurate representation and visibility is so important to the disabled community.

The Dragon Prince is an amazing story to watch and it has so many unique elements in it. It is one that I highly recommend. And it is family-friendly too. I am excited to see the next season, which is expected to be released sometime this year or early in 2022.

What’s on your “to be watched” list? Got any recommendations for me? Comment below and let me know!

Writing Disabilities, Part 2: The Nullification of Disabilities

I was first introduced to disability studies through a critical literary studies class, a basic requirement for English majors where students learn different theories or “lenses” for analyzing literature. This includes theories such as deconstructionism, Marxism, Colonial and Racial studies, among several others. But I noticed that we weren’t assigned to read the last chapter of our textbook, which was about contemporary fields of study and included a small section on disability studies. Naturally, I was curious and read it. While the scant twelve pages had a lot of interesting points to ponder, I found it disappointing. The reason I was disappointed was that it failed to explain trends I have observed over the course of my life about characters with disabilities. I ended up creating my own theory to explain these trends and presented it as part of my final presentation for the class. Since then, I have been revised it countless times. Today, I’m proud to finally share it with you!

This theory is called the nullification of the disabled experience or the nullification of disabilities for short. The gist of it is to examine the relationships between power and disabilities. Because disabilities are associated with many harmful stigmas and with the lower class, disabilities and power are not presented together. Take for example the 32nd president of the United States, Franklin D. Roosevelt, whom I mentioned in a previous blog post. Roosevelt had polio and was paralyzed from the waist down, thus used a wheelchair and other mobility devices. However, he refused to be photographed with his wheelchair because of the stigmas associated with being disabled. He wanted to appear as normal as possible so people would take him seriously and not assume he was weak and feeble. He would use braces under his pants and walk with the aid of a family member to help hide his disability from the public, even though his disability was common knowledge. Roosevelt was essentially trying to “nullify” his disability in the eyes of the public to maintain power, trust, and status.

Roosevelt serves as a good example of how disabilities and power have conflict. Anyone can tell you that the appearance of power is important. The way disabilities are present in stories is equally important. Because of the conflicts between disability and power, they are often not presented as coexisting. When one appears, it often nullifies the other. This can happen in several ways. For example, if a character has a disability, then gains power—the disability becomes ignored or washed away. On the flip side of the coin, a character can be in a position of power, from which they are removed when they acquire a disability. Or another common narrative, a character seeks a cure or must otherwise overcome a disability in order to be powerful enough to defeat the big bad evil force of the story. But the simplest way a disability becomes nullified is when the limitations of a disability are ignored.

The last one is probably confusing to you. After all, isn’t part of the reason I run this blog is to help people see past the limitations of disabilities? This is true; I run this blog is to fight against the stigmas and stereotypes surrounding disabilities. But fighting against stigmas is a little different than acknowledging limitations. (Granted there is an overlap). The point here is that acknowledging and remember the limitations of a disability is a sign of respect. Ignoring limitations silences our struggles and denies that discrimination exists. But going too far to the other side by letting our limitations take center stage, will also encourage stereotypes and stigmas, which further results in overshadowing the capabilities and contributions of those with disabilities.

Think of it this way. I am a deaf person. My coworkers acknowledge the limitations of my disability by making sure they get my attention before speaking to me. They make sure to pull their face masks down so I can lipread. When I worked in a factory, my coworkers would stop machines to eliminate background noise before communicating with me. By taking these steps and accommodating my needs, they are being very respectful. It is an act of empowerment to acknowledge, accept, and respect my limits. Whereas if they don’t pull down their face masks or take steps to communicate better with me (ignoring my limitations) comes off as disrespectful.

Interestingly enough, this is the critic’s argument against the social model of disabilities. The medical model focuses only on limitations through the person’s body whereas the social model only looks at society and cultural factors. The social model doesn’t acknowledge the limitations of individuals’ bodies.

Bringing the idea of acknowledging limitations into the field of literature, I cannot tell you how many times I have seen disabled characters in TV shows or movies portrayed so accurately and amazing in the beginning, but as time goes on their limitations are ignored more and more. Which ends up nullifying the disability because the character is doing things that they shouldn’t be able to do. For example, lipreading. Lipreading is extremely inaccurate and yet, most Deaf characters I have seen on the screen can lipread every single word flawlessly. It drives me crazy! Lipreading is so much more complicated than it is presented on screen and it encourages stigma. (Check out this four-minute video that explains the complexities and issues with lipreading so much better than I ever could).

Representation like this is a slap to the face for the disabled community. Disabled individuals do not have the luxury of choosing when our limitations apply and when they don’t. By ignoring limitations when they become inconvenient, writers and directors end up nullifying the disability. It’s like saying, “We are representing a minority community—but they’re only sometimes disabled because being able-bodied is much more convenient and powerful for the story.”

I recognize this may not be the intention of the writers and directors, but it happens regardless. This is why—to be inclusive—there needs to be more people with disabilities involved in the workforce and especially in the creation of characters with disabilities. They are the ones who are going to spot inconsistencies and inaccessibilities that nullify what it is like and what it means to have a disability.

Maysoon Zayid, an actor, writer ,tap dancer, disability advocate, and comedian

As I was writing this post, I recalled a hilarious TEDtalk given by Maysoon Zayid who has cerebral palsy: “I got 99 problems . . . palsy is just one.” In college, she participated in the theater program. When the theater announced they were going to put on a play where the leading role was a character with cerebral palsy, Zayid thought she had been born to play it. She went through the whole audition process and didn’t get the part. Instead, it went to an able-bodied peer.

Understandably upset, she met with the director to ask why. He gently explained the reason she didn’t get the part was because she couldn’t do the stunts.

“Excuse me!” she said. “If I can’t do the stunts, then neither can the character!”

This illustrates an important point in the representation of disabilities. I briefly mentioned this in a previous blog post about the representation of disabilities in Hollywood. 5% of all roles in Hollywood are for disabled characters. Of that 5%, only 2% of those roles go to disabled actors. The other 98% are played by able-bodied actors. This means that the disabled community (which comprises about 30% of the US population and well over a billion people worldwide) is being represented by .001%.

Because disabilities are often invisible and because anyone can acquire a disability at any given time, Hollywood gets away with able-bodied actors in disabled roles. Whereas other minorities—people of color, women, and those with alternative sexual orientation or gender identities—usually have visible characteristics, so Hollywood can’t get away with it as easily. Respecting, remembering, and acknowledging the limitations and the capabilities of those with disabilities is an act of empowerment. And the best way to learn about those limitations and capabilities is to learn directly from us.

So that is how disabilities can be nullified by ignoring limitations. Another way nullification happens is when a disabled person gains power, their disability will disappear—or vice versa, when a person in power gains a disability, their power disappears. Naturally, this sends several problematic messages about disabilities. A great example of this comes from the Marvel Cinematic Universe, Dr. Steven Strange.* Strange starts off being in a position of power as a genius (albeit arrogant) surgeon. Later, he gets in a car crash which destroys his hands and ends his career. Strange’s life is presented as hopeless, dark, and dreary. Thus, when he became disabled he lost his power and his status—nullification of power by acquiring a disability. In pursuit of a miracle cure, Strange ends up in Nepal training in the mythic arts where he struggles a lot and blames his inability on his hands. When he does finally get the hang of magic with the use of a sling ring, from that point onward, we never see him struggling with his disability again. He appears able-bodied. So when Strange regained power, his disability seemingly disappears. That’s the nullification of disability by power gain, which results in ignoring the limits of his disability. The next time (and I believe the only time) his hands noticeably shake following his gain in power isn’t until several movies later in Avengers Endgame when Strange hands over the timestone to Thanos.

I have so much more to talk about with Dr. Strange, so look out for a blog post in the near future where I will dive deeper into everything I said above and more!

*September 2021; Writing on this character has been my most difficult blog post yet. Originally, I was planning to use this film as an example of my nullification of disability theory. In preparation, I rewatched the film and realized while this film does have moments of arguable nullification, as a whole, the film does an amazing job at acknowledging Dr. Strange’s disability. Check out my revised take on Dr. Strange here!

Image: Marvel Studios

The message that this sends is that a person with a disability cannot hold power or be in a position of power. Furthermore, it reflects an expectation that a disabled hero cannot accomplish the same thing as an able-bodied hero.

To go further, the nullification of disability by gaining power is also common with temporary disabilities. Even an injured character—an example of a temporary disability—is often quickly healed or cured of anything that could make them less powerful or seemingly incapable of achieving their goal. For example, most science fiction and fantasy tend to have technology or magic with the ability to instantly or almost instantly heal injuries.

I think a big reason behind this is that when a writer has a character with a disability because they haven’t been taught very much about disabilities or have lacked access to the subject, they think of the disabled character as “useless.” Thus, finding a way to restore that “usefulness” quickly and reliably takes precedence.

I will admit this is something that I struggle with as a fantasy writer. Injuring characters is a great way to ramp up the stakes and build tension in a scene. For example, in one of my works I have a high-stakes chase scene with a character who ends up taking an arrow to the shoulder. Originally, I had planned for the healer on the team to instantly restore him to an able-bodied state because he has to fight in another big battle shortly after the chase. Without that instant heal option, I have to think about my story differently. How long a wound like that would take to heal naturally? I could give him a minor flesh wound (so he has time to heal naturally) or he could be fighting with his injury—which might not be such a bad idea because I can see it adding tension if done right, especially if he ends up having to sneak around the King’s patrols.

Now, I am not saying that no one should write stories with an “instant heal” or “restoration of able-bodiedness” option. If that is where your imagination takes you, I encourage you to follow it. For me, it has become a personal choice not to have instant heal as an option because I am so interested in exploring the disabled experience on the page. My intention in sharing this side of the coin is to show that there are other options. Instant heals, I feel, are something that has been done over and over. It has become something of an expectation. It’s been ingrained in stories since writing was invented and was probably around for thousands of years before that through oral storytelling. (Fun fact: the Bible is based on stories originally written in cuneiform, the oldest discovered writing system in the world which was first used around 3400 BC).

I, for one, refuse to believe that disabled characters cannot be in positions of power, nor that they cannot participate and play valuable roles in high stake plots. Writers haven’t been taught to explore the perceptions of power in regards to disabilities. Since literature embodies, reflects, and critiques culture, based on what I have seen, there seems to be a deep fear within our culture about disabilities. It is time to start exploring that fear, to question it, and to make apparent what we are really afraid of. What will happen when disabilities are allowed to linger on the page and be seen? What happens when disabled heroes are allowed to save the day?

At this point, hopefully, you are starting to see possible applications of the nullification of disability theory. If you feel that you are struggling with the concept, that’s okay. Critical literary theory usually makes more sense in application than in explanation. This post is meant to serve as an introduction. Over the coming weeks, I will be applying the nullification of disabilities theory to several different works of literature.

Don’t forget to like this post and/or leave a comment below!

FOR FURTHER READING

Goddess in the Machine – discusses a disabled character who is in a position of power and how the limitations are acknowledged

Netflix’s The Dragon Prince – nullification by ignoring limitations

The Inheritance Cycle by Christopher Paolini – nullification by overcoming a disability and power gain

James Cameron’s Avatar – is it nullification?

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
Ellis Island

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!

Movie Report: Crip Camp: A Disability Revolution

Genre: Documentary
Released Date: March 25, 2020
Rated R for sexual references and some language

2020 Sundance Film Festival Audience Award
2020 Miami Film Festival Zeno Mountain Award
2021 36th Annual International Documentary Association Award, Best Feature
2021 Oscar Nominee

Summary
Whenever a bunch of disabled people gets together, it spawns a unique culture. Crip Camp is no exception. A documentary about Camp Jened, which served as the seedbed for the Disability Civil Rights Movement, the bonds these campers made had a global impact. These stories are told in the words of the activists themselves, including Judy Huemann, Jim LeBrecht (who is also the director and producer of this film), and many others. The film includes first-hand footage of the Capitol Crawl, Section 504 protests, and the age of institutionalization. This film is humorous, heart-breaking, victorious, and beautiful.

I’m going to be honest. When I first heard about Crip Camp, I was ecstatic. It was shortly after I was introduced to disability studies and this film was one of the things that introduced me to my history as a disabled person. It is comprised of activists telling their stories interview-style, as well as a compilation of first-hand recordings made by the activists as they participated in these ground-breaking protests and events. For me, it was powerful to watch because it was the first time in my life that I got to see footage of the Disability Civil Rights Movement. And yes, this film made me cry as well as laugh out loud.

Camp Jened was a camp specifically for disabled teenagers that ran from 1951 to 1977. Whereas in the outside world, each of the campers had to deal with discrimination and barriers, Camp Jened was the opposite. Instead of being kept isolated and barred from living life, trying to hide their disabilities as best as they could, campers found independence and connection.

“At the camp you could do anything that you thought you wanted to do. You wouldn’t be picked to be on a team back home. But at Jened, you had to go up to bat!”

Lionel Je’ Woodyard, Camp Jened Counselor

Campers would help each other out. If you couldn’t play soccer with your feet, but you could crawl, then that was how you played. If you couldn’t crawl, then fellow campers would help drag you after the ball. And this was true of everything, not just sports. In this way, Camp Jened created a culture of inclusivity. They would find a way to make things work.

“It was so funky. But it was a utopia! When we were there, there was no outside world.”

Denise Sherer Jacobson, Camper

But camp also provided a place for connection. Campers were able to talk about difficult subjects, such as overprotective parents, sexuality, and the struggle for independence. People with disabilities are often not able to be as independent as they would like to be. For example, growing up I didn’t have a deaf-friendly alarm clock. I had to rely on my Mom to wake me up for school. While she did it without complaint for years, I was frustrated because I didn’t have the luxury of getting up when I wanted to. If I wanted to wake up earlier and Mom didn’t want to—I didn’t have a choice. I was seventeen years old when I got a deaf-friendly alarm clock. I found out about it shortly after joining a deaf basketball team. Being able to get up whenever I wanted to was a freedom I’ve never experienced. The freedom of being independent.

This is my current alarm clock. It comes with a special vibrator that goes under the mattress.
Instead of using sound, I am awakened by vibrations.

Another example of struggling for independence comes from Judy Heumann’s book Being Heumann. She talked about how her mother would always choose her outfits for her, even if Judy wanted to wear something different. But because Judy couldn’t reach her clothes and needed help to get dressed, and her mother was often busy helping Judy’s siblings get ready for school, she often didn’t have a say in what she wanted to wear. While everyone experiences a different version of struggling for independence, it is a common experience throughout the disabled community.

“At camp we tasted freedom for the first time in our lives. Camp is where we had freedom from our parents dressing us, choosing our clothes for us, choosing our food for us, driving us to our friend’s houses. This is something we would have naturally grown out of, like our nondisabled friends, but we live in an inaccessible world, so we have not. We loved our parents, but we relished our freedom from them.
“. . . The freedom we felt at camp was not just from our parents and our need for their daily assistance in order to live our lives.
“We were drunk on the freedom of not feeling like a burden, a feeling that was a constant companion in our lives outside of camp.”

Judy Heumann, Being Heumann pages 24-25

Having these kinds of discussions, connecting with other people with disabilities, and experiencing a culture of complete inclusivity, had a lasting impact on these teenagers. As Jim LeBrecht said, “What we saw at camp was that our lives could be better. The fact of the matter is you don’t have anything to strive for if you don’t know it exists.” They wanted the world to be more like Camp Jened. They kept in contact and started forming organizations. That’s how the Disability Civil Rights Movement started. Many of the campers from Jened participated in the Capitol Crawl, Section 504, and many other protests.

These protests, as I have mentioned in previous blog posts, changed the world. The Americans with Disabilities Act (ADA) was the first civil rights bill for disabled people in the world. The ADA was based on Section 504, which is an incredible story in itself and the first legislation of its kind in the world as well.

Camp Jened also brought together disabled people from many different backgrounds. Some were kept isolated at home, others were allowed to go to school with non-disabled peers, some were enrolled in special education classes, and others came from institutions.

Institutionalization started around the 1800s. At this time, because so many people were living in poverty, institutions were established to provide housing and access to food and water. But it was also a way to segregate the undesirable person from society. Institutions were intentionally built outside of cities, away from society. But institutions in this age were more focused on education and teaching valuable life skills.

With the 1900s came the rise of eugenics. The quality of institutions dropped as it was believed that people with disabilities would never contribute to society. In Germany, institutions were used as part of a program called Aktion T4, which served as the precursor to the Holocaust. In America, it was common practice for families to abandon disabled children at institutions so as not to deal with the social stigmas surrounding disabilities. Many families would never visit their child, opting instead to tell friends, relatives, and siblings that they lost the baby.

Images from these institutions might be mistaken as photos from the Holocaust. Understaffed and overfilled with patients, many of these facilities were dirty and cramped. Patients were malnourished and abused. Some didn’t even have clothes and most would sit in the dark emitting mournful cries.

Crip Camp includes a news story about an institution called Willowbrook. Footage includes children sleeping on the floor in hallways and bathrooms, naked or nearly naked, some covered in their own feces. Willowbrook was so understaffed that each of the children had three minutes to be fed. Jim LeBrecht recalled that one of the campers at Camp Jened was from Willowbrook.

“I remember being in the dining hall and this guy comes in. He was basically eating as much as he could. He was just… kept on shoveling it in until the point where he threw up. It was kind of like somebody coming in from the wild.”

Jim LeBrecht

Ending institutionalization was also a huge part of the Disability Civil Rights Movement. Today, institutions still exist, but there are a very limited number of them. In addition, lot more laws and government oversight are in place to make sure they are healthy and safe places. It helps that we live now in a society that no longer seeks to segregate disabled people from nondisabled people.

Crip Camp is an amazing and powerful film that shows a side of history most don’t know. Currently, it is only available on Netflix. It has been nominated for the 2021 Oscars, which will be taking place one week from today. There have only been two Oscars awarded to disabled people to date. I’m keeping my fingers crossed that this will be the third. There is a huge lack of disabled representation in films and this goes a long way in the fight for visibility.

“Even though [more than] 20% of the population has a disability, 2% of roles in Hollywood are for disabled characters and of that 2%, only 5% are played by people with disabilities. The rest are played by actors without disabilities.”

Marlee Matlin, 2017 Oscar for Best Actress
Marlee Matlin is an American actress, author, and Deaf activist

This means of all the roles in Hollywood .001% are played by disabled actors. Even though the disabled community is the largest minority on the planet, we are still invisible. And we want more than representation, we want authenticity. We don’t want to be represented by discriminatory stereotypes or by able-bodied actors. We want to be shown as ourselves and as people because that is who we are. When people see who we are and what we are capable of, barriers start burning down.

One last thing that I will talk about is how Crip Camp talks about sexuality. Too often, people with disabilities are not expected to be in relationships or be sexual. We are predominately seen as disabilities, not as people. One of the campers in the film talks about her various relationships, including having an affair with the bus driver. Later she had to go to the hospital for stomach pains. The doctor, assuming it couldn’t be anything other than appendicitis, operated on her. The appendix was healthy, however, and the stomach pains persisted. Only after the doctor had exhausted all other options, did he realize that the camper had an STD. It never crossed his mind that a disabled person could be sexually active.

Because so many people share the same perspective as this doctor, it was one of the most powerful moments of the film. It challenges everything audiences think they know about disabilities.

Camp Jened doesn’t just represent the past. It also represents the future.

Who do you hope wins wins at the Oscars this year? Comment below and let me know!

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!

Book Report: Goddess in the Machine by Lora Beth Johnson

Genre: Young Adult Science-Fiction
Published June 30, 2020

Brief Summary

Earth is dying. Seventeen-year-old Andromedia “Andra” Yue Watts is put into cryosleep with hundreds of other colonists to travel to a new planet. The trip will take one hundred years, but when Andrea wakes up, it has been a thousand. Her friends and family are long gone and the people around her keep calling her Goddess. Meanwhile, Zhade, an exiled prince is planning on using Andrea to lay claim to his throne. Zhade and Andrea team up to save the city and find out the mystery of why Andrea was left in stasis.

Warning: Spoilers ahead

Welcome Listen Up readers! This week I’m excited to talk about Goddess in the Machine. What I loved about this book is the way it mixed science-fiction with fantasy. The book alternates between Andrea’s perspective, who sees the world around her constructed by science and technology, and Zhade’s perspective, who sees everything that Andrea does as a form of magic. It blurred the border between the genres of fantasy and science-fiction.

Another intriguing aspect of the book was the language. Since language changes and adapts to the needs of its users over time, and Andrea was asleep for one thousand years, language has evolved to a point it is unfamiliar to Andrea. Think of it as if Shakespeare was put in cryosleep and was woken up today. He would likely see our way of speaking strange. I read this book shortly after finishing a class on linguistics and saw a lot of connections to the things I learned about language and how it evolves.

Now, onto the disability analysis. This might seem strange as my first book report since neither of the main characters are presented as having a disability. Like many other science fiction works, GITM assumes a future where disabilities of all kinds have been eradicated. I discussed in a previous blog post, Defining Disabilities, how disabilities are constructed by cultural barriers rather than from a medical standpoint so that there isn’t a way to eradicate every single disability in existence.

Besides those facts, near the end of the book one of the side characters, Kiv, turns out to be deaf and needs to lipread. While Kiv is not a main character, he provides an example of representation that is better than most. Oftentimes characters with disabilities are there for comedic relief; such as the deaf storekeeper who is busy getting the characters onions they did not ask for. Another common pitfall for characters with disabilities is being killed off, sending multiple messages including; disabilities are weaknesses and that disabilities need to be eradicated.

Kiv breaks the mold differently by being in a position of power—tasked with being the Goddess’s bodyguard. Since the people believe that Andrea will save them and others want her dead, it stands to reason that they wouldn’t let just any soldier be her bodyguard. Only the best of the best. This breaks the mold of what I’ve seen a lot of other books do.

Oftentimes when a disabled character is involved in a story, they are in a position of low power. It is similar to the way that even after the Civil Rights movement of 1964, people of color struggled to be represented in positions of power. For years, they were presented as side characters or as servants, but they never got to be the hero.

This is why certain moments in films are so powerful for the minorities they represent. As an example, in Star Wars: Rise of Skywalker Finn and Jannah ride orbaks (commonly referred to as “space horses”) and lead a battle charge onto a star destroyer, resulting in a powerful moment. These characters are in a position of power where the minorities they represent traditionally are not portrayed as being leaders. Another example of this is the Black Panther movie, which flips the traditional white narrative. A black superhero, who is king of the most technologically advanced civilization on Earth, and protected by an exclusive team of warrior women, outfitted in proper armor that doesn’t fall prey to the male gaze. Few white characters are included, the most prominent one being Agent Ross who quickly finds himself overwhelmed by the technology of Wakanda.

In another Marvel film, Avengers: Endgame there is powerful moment for women, that shows all the female superheroes working together. This particular scene caused a lot of controversy. The superhero world is dominated by men and the male gaze. This moment was powerful because it shows women with superpowers, dominating the battlefield, in a group the same way male superheroes are regularly portrayed. The scene made some people uncomfortable because it is not something they are used to seeing.

Currently, I am not aware of a similar moment in a book or movie the replicates a similar empowering moment of disabled people. Unless counting the few documentaries that recorded the Disabled Rights Movement. While these documentaries are empowering, it is not the same as seeing it in a work of fiction.

Coming back to Goddess in the Machine that’s why Kiv stood out to me. He was in a position of power. This was made even more powerful when Andrea suggests to Kiv that he could be “cured.”

Andrea looked up, studying Kiv—the way he watched Lilibet, reading her lips.

“You’re deaf?” she asked, before she remembered she wasn’t suppose to be listening. It made sense now. Why he never spoke, rarely responded in any way how Zhade would sometimes give him physical cues . . .”Why are you hiding it? Someone could have helped you. I’ve seen the modded arms and eyes here. The sorcerers know what to do. The med’bots—uh, angels, could have fixed you.”

Kiv watched her mouth as she formed the words, his expression hardening.

“I’m not broken.” he said. “. . . I am me. I don’t need to change for you.”

Goddess in the Machine, pages 315-316


I love how Kiv gets a moment to push back against the ableist narrative. Many people with disabilities do not see themselves as needing to be cured. It is a longstanding “ethical” debate within our culture. Unfortunately, there are a lot of people today that believe disabilities need to be eradicated, and methods under discussion range from assisted suicide, infanticide, genetic modification, and laws to make it illegal for disabled people to procreate. All of these, in my not-so-humble opinion, are unethical.

Kiv stands in the midst of these arguments and has probably had to prove himself many times over to the same ableist arguments Andrea makes. In addition, Kiv is involved in a relationship. Interabled relationships are another thing that is rare to see in stories, rarer than seeing characters with disabilities.

One of the things that I am commonly known for among my friends is my anti-romance stand. Romance is something that has always bored me and I have no idea how people can fall in love with someone and commit to a life-long commitment within a few months of first meeting them. However, I have also never seen a person like myself reflected in a romance. As a child, this reinforced my struggles with my disability and identity because in having a disability, I believed I was unlovable. Sometimes I can’t help wondering if I am truly disinterested in romance or if it is a barrier of internalized ableism that I have yet to overcome.

Coming August 24, 2021

All in all, Kiv stands out by breaking a lot of the molds that are common in writing disabilities and I suspect that we will be seeing more of him in the sequel, Devil in the Device, which is currently scheduled to be released in August of this year. I appreciate the inclusivity done by the author because even though Kiv is such a small part of the novel, it was thrilling to see a disabled warrior doing something that mattered, involved in a relationship, and who chooses to remain disabled in a society where disabilities are frequently eradicated.

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Defining Disabilities, Part I

What makes a disability a disability?

Disabilities can be intimidating to discuss since it is a subject that a majority of people lack knowledge about. Most people have been conditioned to think about disability in a certain way or as being in a certain circumstance. In other words, disability is seen as a black and white subject.

In reality, disability is difficult to define. The meaning of it has changed so many times throughout history. Women were once considered to be disabled in comparison to a man. Similarly, people of color were considered disabled in comparison to white people, which was backed by scientific racism. Today it is commonly considered that people are disabled by the limits of their body in a medical way.

However, the medical model isn’t an accurate measurement for disabilities. Disabilities are not defined by a person’s body but by the culture around them. Let’s use an example to demonstrate this. John is a basketball player. He is the best player on his high school team and helped to win the regional championship. Despite all of his talent, John will never be accepted to play on a professional basketball team. Why?

John is 5’5” tall. The average professional basketball player is 6’7” tall. No matter how fast John is or how high he can jump or how well he can dribble, the professional basketball world will see his height as a disability on the court.

That’s one example of how disabilities are culturally constructed. This idea is referred to as the social model of disabilities. People become disabled by barriers in society, not by the difference in their bodies. As an example, a wheelchair user isn’t disabled by the use of a wheelchair, but rather they become disabled when the only way into a building is a flight of stairs. Or another way of thinking about it, a wheelchair user becomes disabled by a culture that relies on stairs instead of ramps. Another example is a Deaf person isn’t really disabled until they put on a movie only to find there are no closed captions. Or to draw a page from my experiences in the pandemic, I’ve become more disabled because the use of face masks prevents me from being able to lipread. There are many more examples I could give on this subject. But what about things we don’t normally think of as being disabilities?

I once gave a presentation in a college class on disability studies. At the beginning of my presentation, I did a poll. “By raise of hand, who here has a visual disability?” About four or five hands went up. I then rephrased my question: “Who here uses glasses or contacts?” There were chuckles and more than half the class raised their hands.

Glasses and contacts are examples of assistive technology. Assistive technology refers to anything used by people with disabilities in order to perform functions that might otherwise be difficult or impossible. Wheelchairs, canes, glasses, medications, hearing aids, are all examples of assistive technology. But so are pencil grips, graphic organizers, voice recognition, spell checkers, fidget spinners, and shoe inserts. If you’ve ever used an elevator, ramp, or escalator—you’ve used assistive technology.

Let’s take it a step further and recall infomercials or “As-Seen-On-TV” ads with the over-reacting actors showcasing useless products, such as a banana slicer or an egg cracker or juice bottle pourer. These products are actually designed for people with disabilities. An egg cracker designed for people who have one hand. A banana slicer for those who don’t have the dexterity to use a knife safely. A juice bottle pourer for people who struggle to hold heavy objects.

Because the market for disabilities is so small, these products have to be marketed to the world at large. The reason the actors in the commercials are so overly-clumsy is that they are trying to mimic disabilities without being obvious about it. Since most people have had no idea about that fact, that means these actors are doing a good job. With that said, assistive technology is meant to help empower people with tools and independence. You’ve likely benefited from assistive technology throughout your life, regardless if you have a disability or not.

Disabilities get even more complicated when you take into account temporary disabilities. Temporary disabilities, as the name suggests, are disabilities that are temporary such as a sprained ankle, broken arm, a concussion, among other things. For the six weeks that a person has a broken leg, they will use a cast, wheelchair, crutches, ramps, and elevators rather than stairs. Then there are the six months of physical therapy after the fracture heals. During all that time they are disabled. Another example of this is a dental cavity that causes a person to chew on one side of their mouth rather than both sides.

This applies in stories as well. How many times have you read a book or watched a show where the main character gets injured, but bounces back in the next scene? A character takes an arrow through the shoulder, but in a couple of weeks it is back to normal? I think we can all agree that’s not realistic writing. So, what are the long-lasting implications of of their injury? What forms of assistive technology might they use while they recover?

By now, hopefully, you are starting to see disabilities aren’t a black and white spectrum. In a lot of ways, everyone has different disabilities in the same way that everyone has different abilities. The meaning of this: the story of disabilities is the story what it means to be human. That’s why it is important to think about disability.

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!