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, Azulaalmost 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.
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.
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.
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.
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.
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.
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.
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.
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!
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.
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!
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
If you’ve been hanging around for a while, then you know I started this blog because there are not many disabled characters or disabled voices on the literary market. I have been planning this writing series since the day I started thinking about creating a blog. If you haven’t already, check out the “Disability History” series as it provides a strong base for understanding disabilities as built by cultural means, which lends itself to world-building and designing characters with disabilities.
First, a little side note about this blog: I will not be posting next week as I have switched to working full-time recently and have since been struggling to keep a work-life balance. Since May is Mental Health Awareness month, I have decided to take a short break because I have been feeling some burnout from my new schedule. I am considering switching to writing posts every other week instead of every week, so I’ll keep you guys in the loop about what I decide to do. And don’t forget to check your mental health too. It’s okay to not be okay. What is important is to take care of yourself and reach out. No one should have to fight alone.
From the moment I learned to read, I always had my nose in a book. Every recess, I would take two steps out the door, sit on the steps, and read while all the other kids ran around playing. When I was ten, I started writing my first novel, which was terrible, but my teacher kept encouraging me and so I never stopped writing. Now I am a graduate of Weber State University with a Bachelor’s degree in Creative Writing. Throughout my life, I have been unconsciously educated and observing trends regarding disabilities in stories.
While I did not have the knowledge or words to explain the things I was seeing until I got to college, I was recognizing the absence of disabled characters by the time I was eight or nine years old. When I took a nonfiction writing class, I struggled to write about myself. I had no idea how to put my disability on the page because I had never been exposed to work by other disabled authors. In trying to find tips to help me, I found nothing. Instead, I went through a long process to develop my methods and ideas for writing disabilities. It has been a life-long undertaking and I’m still learning. I am proud to share my experiences with you and to give valuable writing advice for anyone who wants to know how to write characters with disabilities better.
My philosophy is to encourage all writers, regardless of whether they are disabled, nondisabled, had a disability in the past, are not disabled but have a family member who is, or identifies anywhere in between. It is not my intention to tell writers how to write or what to write. Rather, the goal is to equip writers with tools, perspectives, ideas, and a deeper understanding of what it means to be disabled to apply to their writing.
So, why is there such a gap of disabled characters and authors with disabilities in the literary world? There are several reasons for this. Disabled people have been oppressed for centuries, which means that they are often an afterthought and more commonly, people believe they aren’t worth telling stories about. Over the last few decades, these ideas have been increasingly challenged as the disabled community has received civil rights and is no longer being segregated from society. Though, there is still a long way to go. For example, book publishers tend not to publish works by disabled authors or works with leading disabled characters because publishers assume the disability narrative is not relatable (meaning it will not sell well). Progress has been made in this area and a few publishers are actively seeking out work by disabled writers, but the gap remains.
Another longstanding issue facing disabled authors is, depending on their disability, their manuscripts may have more errors than a nondisabled author. They may not be able to sit at a computer and type or edit. A simple answer to this would be to hire someone to edit or type as needed, but such help is hard to find and frequently expensive. This causes a conflict as publishers expect highly polished work and may not be willing to put in the extra work to be inclusive.
That is a brief introduction to why there aren’t more disabled voices on the literary market. These are barriers that are actively being challenged, especially with the increasing popularity of self-publishing. I believe that we will see an increasing number of disabled writers and characters with disabilities as time goes on.
With that being said, there are ethical questions that are important to discuss when it comes to portraying characters with disabilities. Here are three big questions to help you think about issues in writing characters with disabilities.
1) Referring to characters with disabilities
It is often surprising to nondisabled people that what they think is an appropriate term to refer to someone, turns out to be offensive. For example, deaf and hard of hearing people prefer to be called “deaf” or “hard of hearing” over “hearing impaired.” This is because being called “impaired” has a negative connotation and suggests that the person is broken. Therefore, it is offensive. But the word Deaf represents identity and culture, which is why you’ll see it capitalized in some contexts. This idea is confusing to nondisabled people because “hearing impaired” sounds more polite to them.
This concept also applies to DeafBlind people and Autistic people. In other cases, such as with mobility devices, a different approach is used. A person in a wheelchair is called “a wheelchair user,” but I’ve seen several works that say it like “a person confined to a wheelchair.” This suggests that wheelchairs are like prisons instead of being a form of assistive technology that enables them to participate more fully in society. It also suggests that being in a wheelchair is a terrible, undesirable thing, but it isn’t. There is no reason why a wheelchair user cannot live a life as full and adventurous as someone who doesn’t use a wheelchair.
If you are not sure how to refer to a character’s disability, google it! Or better yet, connect with someone who has the same disability as the character you are writing. They can be an invaluable resource at making sure your character is accurate and introduce you to new ideas and perspectives.
When referring to disabled people in general, either “people with disabilities” or “disabled people” are appropriate terms. Interestingly enough, there is a lot of debate between which of these phrases are more inclusive, but I’ve found that the majority of the disabled community don’t care if “people” are placed first or second. I don’t care which term is used and you’ve probably noticed I use both interchangeably throughout my blog. Another observation readers might have picked up on is that I use “nondisabled” in favor of “able” or “able-bodied.” Because saying disabled next to abled suggests that one group is “less than” another, I use nondisabled and disabled because it lessens the divide between these communities. The times I do use the terms “abled” or “able-bodied” is when I want to emphasize the differences between these perspectives. You’ll see an example of this later in this post.
Of course, inclusive writing avoids slur words and derogatory terms such as “deaf and dumb” or “midget.” I also include phrases like “what, are you deaf?” or “what, are you blind?” I get really angry when I read phrases like this because they are using disability as an insult while further reinforcing the ableist idea that disabilities are undesirable and having a disability makes someone worthless. What is insulting about being deaf? I am proud to be deaf! What’s wrong with being blind? Or using a mobility device? What is insulting about having a mental illness? Millions of people have these disabilities across the planet. We are not made more or less worthy by having them.
An example of a poor phrase comes from a book I have been reading over the last week, which said: “people suffering from permanent disabilities.” This phrase assumes that all people with disabilities are in a state of constant suffering, especially those with permanent disabilities. As someone with a permanent disability myself, “suffering” is not a word that comes to mind when I think about my disability. If anything, I suffer from the stigmas and stereotypes surrounding my disability than my disability itself.
I find it helpful to think of writing disability in the same way that one would write a hair color. Hair color is often a quick statement or a brief description. “Her hair was dark brown,” or “Her hair was dark, like rain-soaked earth and smelled of wild sea winds.” Hair color is rarely explained any more than is necessary as there are a good number of things more interesting about the character than their hair color. When disabilities are involved in a story, it is tempting to over-describe it and try to capture every possible detail, barrier, and aspect of it for the reader. In doing this, the disability comes before the character. If you were to talk about a character’s hair color for a full page or more, it would turn readers off. Writing disabilities are the same way. State what it is, don’t give more detail than necessary (unless it naturally comes up, such as an able-bodied character who accidently leads the way to a flight of stairs while absentmindedly talking with a friend who uses a wheelchair).
2) The Able-bodied writing Disabled narratives
The story of disabilities has been told from an able-bodied perspective many times over, whereas it has rarely been told from a disabled perspective. This has resulted in a predominant image used for disabilities of poor, suffering children and adults, weak and meek, as they are paraded on screens or stages to inspire pity or used as inspiration porn. In other words, disabled people have been represented poorly, if we are represented at all.
This narrative is something that I, among thousands of others, are actively challenging. Think about if a white author and a black author both wrote a story on what it is like growing up black in the deep south. Whose story would be more realistic? Of course, the black author’s because it will have a completely different perspective and be able to pinpoint details about discrimination that a white author, however, educated she may be about discrimination against people of color or how much she can emphasize with their experiences, will not be able to write as deeply as someone who is black.
There are exceptions of course. A parent of a disabled child would be able to write about disabilities in a different way than a parent of a nondisabled child. Going back to the example of black and white narratives, I will bring up The Help by Kathryn Stockett. For readers who are not familiar with the story, The Help is both a novel and a movie that takes place in Mississippi in the 1960s, a hotbed of racism. The main character is a white writer, who becomes interested in recording and sharing the true stories of black housemaids. I think the way Stockett (who is white) approached the story is smart. By using a white character, who will never be able to fully understand what it means to be black, she was still able to talk about discrimination and horrible things that were done in the recent past. Clearly, Stockett is well educated about discrimination, history, and the black community, but she is also respectful of how much she doesn’t know.
From my own experiences in reading works by authors of color versus white authors, the works of the former tend to hit me in the gut more. Their work is educational and often eye-opening. For example, when I read I Am Not Your Perfect Mexican Daughter by Erika L. Sanhcez, there was a single line about how the main character had to have white dolls for her Quinceanera decorations because none of the stories sold dolls of her skin color. That line stuck with me. When I got to stores now, I notice whether or not figurines are inclusive. Like at the local gardening store, I could not find a single gnome, fairy, or other figurines that weren’t white. At a family outing to an aquarium, I noticed a collection of mermaid plushies in the gift shop. They were adorable and sparkly, but all of them were white! It put a bad taste in my mouth, especially because I know what it is like to be underrepresented. I know what it is like to not see yourself reflected in advertisements or toys. It is a sad thing. But my point here is that one line from a book by an author of color has significantly changed my perspective.
That’s why I’m bringing up the question of the able-bodied writing disabled narratives. Now if you are someone who is able-bodied and desperately wants to write a story with a leading disabled character or other disabled characters, by all means, please do so! Beyond a shadow of a doubt, there needs to be more representation of disabled characters. But the point of this ethical question is to make sure that you write respectfully about what you don’t know.
3) Why do you want to include a character with a disability?
This ties a lot into question 2. I have seen several works and movies that involve a character with a disability, only to have the character killed off a few pages later, or to provide comedic relief. Another misuse of disabled character is inspiration porn—meaning that disabled people are objectified for being inspirational, like how women are objectified for their bodies. I’ll be talking more about inspiration porn in a future blog post.
An easy way to figure out if you are writing inclusively (beyond simply involving a minority character), is to ask the questions about the character. What is their purpose? What are their goal(s)? What are their flaws? (It is important to note that disabilities do not qualify as flaws or as obstacles to overcome). Is it to give other characters an inspiring speech (possibly unintentional inspiration porn)? Are you foreshadowing death at the same time that you introduce a disabled character (meaning, are you planning to kill them off)? Are they being used for comedic purposes? Is the character being played on stereotypes?
These questions are to help guide your thoughts and intentions about being inclusive. Because there is a lack of education about the disabled community, the majority of people have no idea how little they know about disabilities. It’s dangerous because people think they can imagine what it is like to be disabled, but disabilities are a much deeper identity than surface level, which is something a writer will never know unless they take the time to research the matter.
Please don’t continue to write narratives that use disabled people solely as sources of inspiration or as a character to be killed off or for comedy. We are people with lives and talents and skills and who are worthy of being told stories of. Give us disabled superheroes. Give us disabled princesses. Put us in positions of power—government leaders, super agents, teachers, doctors, military roles, etc. Those are the stories that we’ve never had. The kind of stories I never got to read as a child.
In conclusion, it can involve a lot of critical thinking when writing a character with a disability. It is a subject that I find intimidating, but I remind myself that every great thing worth doing is going to be intimidating at first. Writers don’t write because it is an easy thing to do. We write because we want to share a connection that surpasses words on a page. Writing enables us to share experiences across languages, cultures, distances, time, and background. We want to expose things, both terrible and wonderous. But above all else, reading and writing helps us to understand
See you all in a couple of weeks! Until then, keep on writing!
I hope you guys enjoyed this introduction and I look forward to sharing so much more! Don’t forget you can follow this blog through by signing up for email notifications or follow my page on Facebook! If there is a topic you want me to cover in the future, don’t hesitate to let me know either by commenting below or sending a message under the Contact page.
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.
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.
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!
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.
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.
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.
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.
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.
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!
Brief Summary Judith (Judy) Heumann has been front and center throughout the disabled civil rights movement in the 1960s and forwards. She talks about what it was like growing up as a disabled person, from being denied an education, denied access, and denied her teaching license because being in a wheelchair was considered a fire hazard. Judy went on to become one of the leaders of the Section 504 protest—the longest sit-in of American history. This book tells her story in her own words.
Good morning Listen Up readers! This week I am excited to introduce you to Judy Heumann and the Section 504 protest!
Judy holds a very special place in my heart. When I first started learning about the disabled community, disability studies, and relearning what it means to be a disabled person, I came across Judy’s TEDTalk, “Our fight for disability rights—and why we’re not done yet.” As I was listening to her talk about growing up and the protests she participated in, I was overcome with emotion. It was the first time in my life that I heard my history. In school, the disabled civil rights movement was never mentioned. I had no idea how or why I had rights. Judy’s talk was the first time that I heard the names of protesters and the stories of the protests. This history, these stories, are my heritage. And getting that heritage at the age of twenty-two changed my life. Especially as someone who has spent half my life wishing I was dead. I realized that there were thousands of people who fought for me, who thought I was worth fighting for, and they succeeded. Now, I run this blog about disabilities, literature, and culture. I imagine it’s the first step of many I will take in fighting against historical silencing and oppression.
Section 504 was part of the Rehabilitation Act of 1973. It was a tiny section created by a few supportive senators who wanted to sneak in a civil rights provision into the bill. It is important to note that disabled people had been left out of the Civil Rights Act of 1964. It was legal to discriminate against someone with a disability. Businesses didn’t have to accommodate disabled employees or customers. Schools refused to teach disabled children. There were unethical laws such as the “ugly laws” (which outlawed the appearance of a “diseased, maimed, mutilated, or in any way deformed [person], so as to be an unsightly or disgusting object.” But the worst thing that was going on, society was in complete denial that this discrimination existed. Basically, if you were a person with a disability, you were not seen as a person.
“School is how we pass knowledge, skills, and values on to children–for the good of society. In America, school is considered so important, that, since 1918, it has been compulsory. “For everyone except us.”
Being Heumann, page 21
Section 504 reads “no otherwise qualified handicapped individual in the United States, as defined in section 7(6), shall, solely by reason of his handicap, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance.” It not only acknowledged that discrimination against disabled people existed, but it would force any organization receiving federal funds to become accessible and not discriminate against disabilities. This meant schools, universities, city streets, police stations, hospitals, the government itself—all these things that had been cut off from the disabled community would have to be accessible.
The sneaky tactic worked. The bill passed, but it still needed a signature from the secretary of Health, Education, and Welfare. When Section 504 was understood, it made a lot of people unhappy. No other civil rights act had involved costs before and people didn’t see why the world needed to be made accessible. In 1977, four years after the bill had passed, the disabled community decided to take action.
“In general, institutions don’t like change because change takes time and can entail costs. In particular, the institutions didn’t see the need for spending resources to adapt their buildings, programs, or classrooms for disabled people. It would be too costly, they argued, an unfair financial burden–and how many disabled people really went to university, or participated in x, y, or z specific activity anyway? “Right there was our catch-22: because the country was so inaccessible, disabled people had a hard time getting out and doing things—which made us invisible. So we were easy to discount and ignore. Until institutions were forced to accommodate us we would remain locked out and invisible–and as long as we were locked out and invisible, no one would see our true force and dismiss us.”
Being Heumann, page 80
Community is a really strong theme throughout this book. In fact, on the first page of her book, Judy says “for any story of changing the world is always the story of many.” The disabled community is very unique because our community isn’t built on blood. For colored people, they have friends and family that share the community experience. Religious groups too. I grew up in a Mormon household and was part of a large Mormon community. But the disabled community isn’t typically bound by blood (granted there are some cases where things like deafness runs in families). We come from every background. Some of us are black, some of us are gay, some of us are Muslim, some of us are atheists—there is no boundary that disability hasn’t crossed. We are the most diverse community on the planet. This intersectional nature of the disabled community played a big role in getting Section 504 signed.
“For too long, we have believed that if we played by the rules and did what we were told, we would be included in the American Dream. “We have waited too long, made too many compromises, and been too patient. “We will no longer be patient. There will be no more compromises. “We will accept no more discrimination.”
Judy’s speech at the Section 504 rally; Being Heumann, page 92
Judy and her friends hosted a rally in San Francisco, near the office of Health, Education, and Wellness who was in charge of enforcing Section 504. They decided to march into the building and talk to the Regional Director, Joe Maldonado. Unfortunately, Maldonado had never even heard of Section 504, meaning that the government had zero intention of ever enforcing it. Our rights were such a low propriety that even the people charged with enforcing them didn’t know about them. Judy addressed the crowd behind her, “We need you to stay with us in the building until the government signs the regulations for 504!”
“For people with disabilities, a sleepover is not as simple as tossing some sandwiches and a toothbrush into a backpack. In addition to personal assistance, a fairly high number of us also require various types of daily medications and have things like catheters that need to be changed, or the need to get turned at night to avoid bedsores. Many people of course had come without a personal attendant, any kind of food, or even a toothbrush.”
Being Heumann, page 98
Seventy-five protesters committed to staying on the first day. Now, this was a coordinated event. Section 504 rallies and sit-ins were happening around the country in Washington D.C., Boston, Seattle, New York, Atlanta, Philadelphia, Chicago, Dallas, and Denver, but the San Francisco protest is the only one the held out. Others were starved or waited out by officials who used tactics such as fake bomb threats, cutting off the power, water, access to food, and communication.
“We were being talked about as if we were a foreign army. The public was stunned. People weren’t used to thinking of us as fighters—when they thought about us at all. And I don’t say that in a bitter way, but in more of an honest way. We were a people who were generally invisible in the daily life of society. I mean, think about it. If you didn’t see us in school, because we weren’t allowed in; or in your place of employment, either because we couldn’t physically access it or because we couldn’t get hired; or on your form of public transportation, because buses and trains weren’t accessible; or in restaurants or theaters, for the same reason—then where in your everyday life would you have seen us?”
Being Heumann, page 103
So why was the San Francisco sit-in successful? The truth is that it wouldn’t have been successful without the help of other minority communities. For example, when government officials cut off access to food, the Black Panthers fought their way past security to bring food and mattresses every single day. This was an incredible sacrifice on their part since they didn’t have a whole lot of funding, but here they were dedicating time, money, and resources for a cause that wasn’t their own. When asked why they replied “You’re fighting to make the world a better place. That’s what our goal is too.”
In addition, there was a local church group that held an ongoing vigil outside the HEW building. Since the protesters couldn’t be seen in the building, having a vigil outside gave news crews something to film and talk about, while bringing awareness to the importance of getting Section 504 signed.
At last, Judy and the other protest leaders were invited to meet in Washington D.C. with various senators to put pressure on Joseph Califano (the current Secretary of HEW) and President Carter to sign Section 504. On Thursday afternoon, April 28, Section 504 was signed and the news spread the next day. On the morning of April 30, well over a hundred protesters walked out of San Francisco’s HEW office.
“I was told there was jubilation on the fourth floor of the San Francisco Federal Building—victorious shouting, hugging, laughter, and, ultimately, crying. “Because, as it turned out, people didn’t want to leave the building. “They’d made friends, had fun, fallen in love, and felt fully free to be themselves. And in the process, something magical had happened. In the cocoon of the building, a metamorphosis had occurred. “’We all fell in love with each other,’ CeCe Weeks explained to a reporter. “’I’ve discovered that I count as a person,’ a protester told another reporter. “’Instead of seeing myself as a weak person, I found my strength reinforced by others like me,’ said another. “. . . They decided to spend one last night together in the building to celebrate.”
Being Heumann, page 147
The Section 504 protest remains the longest sit-in of American history, beginning on April 5 and lasting twenty-six days. It marked the beginning of major social change. It also happened to be the first piece of civil rights legislation for disabled people in the world. Section 504 then paved the way for the Americans with Disabilities Act (ADA), the official bill of rights for disabled people in America, which was another global first. In 2006, an international treaty based on the ADA was adopted, called the Convention on the Rights of Persons with Disabilities (CRPD). The CRPD established civil rights for disabled people by any country that signed it. Currently, the CRPD been signed and ratified in more than 163 countries.
This is how Section 504 changed the world. Disabilities are universal. No matter where you go in the world, or where you are from, no matter what culture you come across, no matter the color of skin or religious practices, you will always find people with disabilities. Section 504 is not the only event Judy talks about in her book. She also talks about the Capitol Crawl and more current events, such as during the Trump administration trying to weaken the power of the ADA. Sadly, disabled civil rights are constantly under fire.
A recent example of this (which is not in Judy’s book): when Covid-19 first hit America, several states began to draft triage legislation for use in the case that hospitals were overrun. This legislation would help to take pressure off the doctors on deciding who could receive care when resources are scarce. The two groups at the bottom of the list for care were 1) people over the age of sixty and 2) people with disabilities. When I learned about this, I was shaken to my core. And I was angry that my government, who is supposed to support and protect my rights, had decided that I, and millions of other people like me, were expendable in a time of crisis. I was terrified of getting sick and being turned away at the hospital for being deaf. And I had no idea how I could raise my voice and fight against that discrimination. When I told my family about what was happening, they didn’t believe me. “Oh, that’s not going to happen,” they said. It’s that denial that ableism exists that has kept disabled people segregated from participating in society for centuries. All of these things combined made me feel invisible and small—like an ant in the wrong place that somebody was trying to crush under their foot.
I am not currently aware of any triage legislation that has been enforced in America during the pandemic. When these first drafts came to light, several independent law agencies across the country took a stand against it, recognizing that it was a violation of civil rights for both the elderly and disabled. But in other parts of the world, this kind of legislation has been and currently is in use.
Ableism is a very serious matter. A life-and-death matter more often than you think it would be. And before you dismiss that, remember that the problems and issues of disabled people have been dismissed time and time again. So listen, listen up to disabilities. We are fighting to be made visible. We are fighting for the recognition that our problems do, in fact, exist and our needs to be addressed because the world so often dismisses us. People with disabilities are the largest minority in the world and we are the most underrepresented. Our stories are not being told. America loves the narrative that we are charity cases, weak, rare, and a source of objectified inspiration. But we are not charity cases. We are not rare and we are not weak. We are people with dreams and families and lives. We are people that love doing things, even if we do them differently than you’d expect.
Because, above all else, we are human beings.
Don’t forget to leave a like or a comment below. I love hearing from you guys. Thank you for all the support! Being Heumann is a great read for an overview of disability civil rights movement and learning about the disabled identity.
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.
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.
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!
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.
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.”
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!