Writing Disabilities, Part 4: Villains and Disabilities

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Writing Disabilities, Part 2: The Nullification of Disabilities

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

FOR FURTHER READING

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

Netflix’s The Dragon Prince – nullification by ignoring limitations

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

James Cameron’s Avatar – is it nullification?

Book Report: The Wonky Donkey by Craig Smith and illustrated by Katz Cowley

Genre: Children’s Fiction
Published May 1, 2010

Summary
Enjoy tongue-twisting fun as readers get to know more and more about the life and personality of the Wonky Donkey with each turn of the page.

Good morning Listen Up readers! Today I am talking about one of the most popular children’s books on the market. In fact, The Wonky Donkey (TWD) has been a best seller for several years. As of writing this, it is listed as Amazon’s #1 Best Seller in Children’s Farm Animal Books and maintains a 5-star rating out of nearly 60,000 reviews. This is impressive considering how competitive the children’s book market is.

For those who are not familiar with the book, it follows a Donkey who uses a prosthetic leg (hence, how he got the name “wonky)” as he goes about his life. But the words used to describe the Donkey and his characteristics are subtly controversial. Nearly the entire first page of reviews on Amazon are 1-star ratings because of the word choice. The majority of other reviewers left 5-star ratings, often saying they were disappointed in the 1-star ratings and told others to “lighten up” about the word choice. I have included a few screenshots of these reviews. The following were retrieved on May 17, 2021, and were found on Amazon’s first page of reviews.

Review by L California, titled “Want your child to call an amputee ‘wonky’? Then buy this book!” 1 star rating

“Absolutely offensive. I would never read this to my impressionable 4 year old. Immediately the donkey is called ‘wonky’ for having only three legs and an artificial limb. Mind you, it’s a limb that looks like a modern day prosthetic. How horrible would it be to have my child call an amputee ‘wonky’!

“What if it was a recent amputee that hadn’t come to terms with their new reality or gotten comfortable yet with staring strangers? In my profession, I’ve come across too many combat vets, bone cancer survivors, diabetics, or vehicle accident survivors with an amputated limb to every be insensitive with ‘wonky’.”

Review by Tidbit, titled “What’s not to love?” 5 star rating

“I have to be honest, I bought this book for myself. I’m a 62 year old grandmother whose grandmother whose grandchildren are all grown up, or enough that they don’t sit on my lap anymore. I loved this book. I’m disappointed that the very first review was 1 star because the write didn’t approve of the word “wonky” get over it. There are a lot of words that may not be proper, but this one hits the nail on the head. Thank you for my smile every time I read the book.

Review by MJK, titled “Completely inappropriate,” 1 star rating

“The Wonky Donkey sets a precedent for bullying behaviors. Like many others, I thought the video with the Scottish grandma reading it was adorable, so I bought it thinking it would be fun to read to my 7 year old and my toddler. Like many parents, I am doing my best to raise my kids to be accepting of all and to have compassion for those who struggle. This book seems to be severely lacking in both while suggesting that it’s funny to make-fun of others. My 7 year old said ‘that was kinda mean!’ when I asked him for his opinion on it.

“I’m sure someone might read my review and say, ‘it’s just a silly story. Lighten up!’ To that I ask, if the story was about a child rather than a donkey, would you still think it was a great book? No! Because that would be cruel. This book suggests to young children that this behavior is ok for anyone. I would give it another star if it concluded with a moral lesson, but it falls miserably short there as well. Disappointed that Scholastic chose to print it.”

When I first read this book, I wasn’t sure what to think. I didn’t feel the author intended to make fun of the Donkey’s disabilities and it didn’t seem that offensive to me. But then I do not use a prosthetic or an eye patch. To help myself understand this issue better, I decided to ask myself how I would feel if the Donkey used hearing aids and was called something like “The Echoing Donkey.” This would be extremely insulting to me as a Deaf person. I regularly have to ask people to repeat things they say, then I repeat it back to them to make sure I understood what they said. It is a vital strategy for me to communicate and it isn’t easy. To have someone make a joke of that makes me angry. In this sense, words like “wonky” or “winky” are not mindful terms for someone who uses a prosthetic or an eye patch.

Can you imagine someone referring to Nick Fury as “winky?”

As I said, I don’t think the author intended to make fun of disabilities. I think he was focused on making a funny book and was largely successful. But the book does end up playing on ableist ideals which serves as an unconscious reflection of our culture’s perspective toward disabilities. What I mean by this people are opinionated when it comes to disabilities. My last series of blog posts covered the history of disabilities and the history of the disabled civil rights movement. One of the most challenging things that disabled civil rights activists faced was getting people to acknowledge that discrimination against disabilities did exist. I think that comes into play with TWD and why some people are fine with it and others are against it.

Because this seemed to be a controversial book, I wanted to have a second opinion on it. So, I decided to ask some of my friends who happen to be teachers, what they thought about the book and if they would include it in the classroom. Out of respect for their privacy, I will refer to them as Teachers A, B, C, and D.

Teacher A teaches kindergarten. When I pulled out my copy of TWD, she was excited as it was a book she had been considering for use, but initially decided against it because it mentioned coffee. (Coffee is a controversial subject in the state of Utah). She talked about the importance of kids learning to rhyme and the way it was used in TWD would help kids learn to build self-awareness. She saw the book in a very positive light as getting to know the Donkey beyond his disabilities.

Teacher B is a special education teacher. He didn’t like the book as he felt it was assigning labels. He also said that he wouldn’t use this book in the classroom from a practical standpoint, as rhymes are difficult for some of his kids. Which is a point I had not considered. It brings up a whole different perspective on the subject of writing inclusively when talking about writing for an audience with disabilities, but that is also an entirely different subject which I won’t be able to get into it today.

Teacher C, who is working toward her degree in education, had strong opinions on TWD. She pointed out the words used to describe the Donkey all had negative connotations and felt that the book in general was reinforcing stereotypes. “If it is not going to educate or show the beauty of disabilities, then it is ableist,” she said.

Teacher D is also working toward a degree in education and is a mother. Like Teacher A, she recognized that learning rhymes and self-awareness is important for kids. It is a fun book to read for both children and adults. But like Teacher C, she noticed the word choices all had negative connotations. “Disability isn’t really being represented here,” she said, “because it is an animal. It is using the missing leg and missing eye as something to laugh at.” She ended by saying that she would not use it in a classroom or read it to her kids.

Post-discussion, all the teachers said they would not use TWD in the classroom. This includes Teacher A, who had a positive perspective of the book at the beginning, but by the end of hearing what others noticed and thought about the book, said that she wouldn’t use it even if it didn’t mention coffee. She pointed out that there were plenty of other books available that teach kids rhymes and self-awareness which are more inclusive.

TWD has two sequels, The Dinky Donkey and The Grinny Granny Donkey, which are about the Donkey’s daughter and mother. The word choice in these books is similar to that of TWD, meaning that many of the words used to describe the characteristics of the main character have negative connotations, though the characters themselves don’t have disabilities. Which sparked a new train of thought in my brain.

Donkeys, because they are associated with labor and lower class standing, are not thought of as being majestic creatures. Donkeys are generally expect to be dirty, smelly, stubborn, stupid, and grumpy. In that sense, the negative word association fits within that context. If TWD was a story about a donkey without disabilities it would probably be socially acceptable. Maybe the Donkey is having a bad day and stubs his toe and walks a little wonky from that. Then he gets something in his eye and becomes winky trying to get it out. The words haven’t changed, but the story isn’t as controversial anymore. Yes, readers are still laughing at a donkey, but in our society, it seems to be more socially acceptable to laugh at a dirty, stinky donkey than a dirty, stinky, disabled donkey.

All in all, The Wonky Donkey is a short book that sparks a lot of thought on the subject of stereotypes, word choices, and cultural perspectives. It also highlights a lack of awareness and education among writers and publishers on issues surrounding writing disabilities. On a personal note, my biggest issue with TWD is that this it is a children’s book. Books such as this start teaching ableist ideals to young children, thus encouraging another generation to continue believing the stigmas surrounding disabilities and the illogical exclusion of disabilities from society and stories. These issues are subtle in TWD, but important issues nonetheless.

What is your opinion on The Wonky Donkey? Comment below and let me know!

In my previous post, I mentioned that I might be switching to posting every other week rather than weekly. I have decided to proceed with that. This will allow me to have a better work-life balance, enable me to work on other writing projects while continuing to write quality blog posts for you. Thank you for your understanding and continued support!

Movie Report: Crip Camp: A Disability Revolution

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

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

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

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

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

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

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

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

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

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

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

“At camp we tasted freedom for the first time in our lives. Camp is where we had freedom from our parents dressing us, choosing our clothes for us, choosing our food for us, driving us to our friend’s houses. This is something we would have naturally grown out of, like our nondisabled friends, but we live in an inaccessible world, so we have not. We loved our parents, but we relished our freedom from them.
“. . . The freedom we felt at camp was not just from our parents and our need for their daily assistance in order to live our lives.
“We were drunk on the freedom of not feeling like a burden, a feeling that was a constant companion in our lives outside of camp.”
Judy Heumann, Being Heumann pages 24-25

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

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

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

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

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

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

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

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

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

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

“Even though [more than] 20% of the population has a disability, 2% of roles in Hollywood are for disabled characters and of that 2%, only 5% are played by people with disabilities. The rest are played by actors without disabilities.”
Marlee Matlin, 2017 Oscar for Best Actress

Marlee Matlin is an American actress, author, and Deaf activist

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

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

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

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

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

Disability History, Part 2

Disabilities, Autism, and Neurodiversity in Human Evolution

Vaccines are a form of accessibility technology. This is because not everyone’s immune system works in the same way. As people age, their immune systems naturally start to slow down and weaken so that they are more susceptible to infections. Other people have compromised immune systems that can be temporary or permanent. Other people can’t be vaccinated because they are allergic to some kinds of medicines, so they are at risk as well. When enough people are vaccinated, it breaks down barriers and enables these people with immunocompromised disabilities to participate more fully in society.

This picture was taken shortly after I got my first vaccination shot for Covid-19. They didn’t give me a Band-Aid, so I came home and used one of my own.

There are a lot of myths surrounding vaccines. Today’s blog post will be tackling the biggest of them: that vaccines cause autism. Autism is a complex neurological condition that expresses itself in a wide variety of ways. It affects how people see the world, impacts their behavior, and communication. No two people experience or express autism in the same way. For this reason, autism is best explained as a spectrum because of the diversity found in this community.

There is a continuous increase in the autistic population, particularly in the last couple of decades. Many scientists and researchers are trying to figure out why the population is increasing. Autism is a genetic disorder, but the genes for autism are found in most individuals (1). This is why the saying “everyone is on the spectrum” is popular. But just because everyone is on the spectrum doesn’t mean that everyone is autistic.

Autism has existed since the dawn of humanity. Recent research has shown that one of the genes for autism AUTS2, is one of the things that separated Homo sapiens from other human species (2). It also shows up exactly where early humans diverged from the great ape family. More research needs to be done into this area since disability studies is still a new and emerging field. With new genetic testing, we can detect autism and other neurological conditions in our ancestors.

One of the most interesting things that have been found is that Homo sapiens, in comparison to other human species like the Neanderthals, were highly susceptible to brain conditions (3). In other words, Homo sapiens have a much higher capacity of neurodiversity (4). Neurodiversity refers to brains having a lot of variation in things like social functions, attention, learning, mood, among many other things. To give examples of this, some people are more extroverted and some are more introverted. Some people can learn by listening to instructions while others learn better by being shown what to do. Some people are good at verbally expressing their opinions to others and in other cases (myself included) are better at communicating in other forms such as writing. That’s why some people understand how to compose music, why some people have dyslexia, others pick up on patterns, and some struggle to learn to read. The list of examples is endless. With other human species, their neurodiversity might have been that they were only extroverts or that they learned only by a certain method.

Since Homo sapiens are the only surviving species, our neurodiversity likely played a large role in our ability to adapt and innovate. But this neurodiversity can also cause problems. For example, public schooling is often like a “factory line,” assuming that everyone will learn at the same pace and can learn in the same way. The reality is that there needs to be more diversity in how things are taught because not everyone learns the same way. It’s a topic at the center of education because we are still trying to figure out how to best accommodate everyone’s needs.

In the case of autism, there is no evidence that it developed in other human species or any other type of animal. Therefore, it can be assumed that autism is unique to homo sapiens as an expression of neurodiversity. This also applies to many other types of mental disabilities such as bipolar disorder, schizophrenia, Down Syndrome, and many others. Neurodiversity is not limited to mental disorders either. For example, when it was discovered that I was deaf, there was a whole team of doctors who conducted a study to find out why I was deaf. A physical examination confirmed that there was nothing mechanically wrong with how my ears worked. When I was six weeks old, I was given an MRI which came back as normal. The only conclusion the doctors could come to was that my brain had different connections. In other words, I am deaf as a result of neurodiversity.

Disabilities caused by neurodiversity, such as autism, allow people to bring different toolsets, skills, and talents to the table. Diversity was a huge advantage. So, now that it is understood that autism is a naturally occurring and normal state of being human, the question must be asked: why are more people being diagnosed with autism than ever before?

First, autism is hard-coded into our DNA. There have always been autistic people throughout history though they have been widely misunderstood. Evidence of autism can often be found in folklore such as changeling myths, where a fairy would replace a child and act in odd ways. These myths stem from autism as it generally doesn’t become noticeable until about the age of three to five. Without scientific explanations, it was easy to believe that the autistic child was possessed by an evil spirit or replaced by another being altogether.

Autism may not have been noticed in the past because old societies with repetitive work, such as farming or crafting has fewer barriers. An autistic man who didn’t have great social skills might have been regarded as “the strange, old man over the hill” Societies in the past didn’t have as many barriers to those with autism. It was much harder to see. In contrast, today’s world is bigger, louder, brighter, and far more complex and interconnected to the point that even non-autistic people can become overstimulated in day-to-day life.

In short, the reason why more people are being diagnosed with autism than ever before is that the world is more hostile towards them than it has ever before. Even those with mild amounts of autism are now being affected, whereas in the past, their autism might not have been noticeable or challenged by the society they lived in.

Personally, I don’t think the number of autistic people has increased over time. Rather, because we have a greater understanding of it and because of how hostile modern society is towards those with autism, that’s why the autistic population seems to be increasing. Autism has always existed. We just haven’t recognized it until recently.

In conclusion, autism is not caused by vaccines. Autism has always been a part of what it means to be human. Some researchers argue that we are human because of disabilities like autism (3). Neurodiversity was and still is, important and invaluable. Because of neurodiversity, Homo sapiens were likely able to outthink, adapt, and innovate in a way that other human species couldn’t. Scientists and researchers when trying to find the first signs of humanity and society in human evolution, look for a healed femur. A person or any other animal, that has a broken femur will not be able to care for themselves and will die without help. So a healed femur means that at some point, at least one other person or a whole group helped nurse the injured person back to health, bringing them food, keeping them safe, and adapting to live differently. In other words, the first sign of our humanity and compassion begins with the presence of disabilities.

Don’t forget to leave a like or a comment down below! I loving from readers!

References

Sinclair, James. Is Everyone on the Autism Spectrum? 18 Mar. 2019, autisticandunapologetic.com/2019/03/16/is-everyone-on-the-autism-spectrum/.
Oksenberg, Nir, et al. “Function and Regulation of AUTS2, a Gene Implicated in Autism and Human Evolution.” PLoS Genetics, vol. 9, no. 1, 2013, doi:10.1371/journal.pgen.1003221.
Spikins, Penny. “What Role Did Autism Play in Human Evolution?” Sapiens, 9 May 2017, http://www.sapiens.org/biology/autism-human-evolution/.
Langley, Michelle. “Humanity’s Story Has No End of Surprising Twists.” Sapiens, 15 Mar. 2018, http://www.sapiens.org/biology/human-evolution-australia-asia/.

Book Report: Disability Visibility by Alice Wong

Genre: Adult Nonfiction
Published June 30, 2020

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

Warning: Spoilers Ahead

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

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

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

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

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

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

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

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

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

“You’re fine.” She said.

“What?” I was confused.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Welcome to Listen Up

An Introduction to the story and the person behind the blog

Hello Reader!

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

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

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

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

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

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

Five pages later, the deaf character was killed.

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

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

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

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

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