Movie Report: Marvel Cinematic Universe Doctor Strange directed by Scott Derrickson

Genre: Superhero, Action, Science Fiction/Fantasy
Released: October 20, 2016
Rated: PG-13 for sci-fi violence and action

Brief Summary
Doctor Steven Strange is at the height of his career as a neurosurgeon when a car crash damages his hands. In a desperate search for a cure, Dr. Strange ends up learning magic at Kamar-Taj and comes to realize that the world is in peril.

*Disclaimer: This post will focus exclusively on Dr. Strange based on the MCU movie. I will not be covering any comics or TV shows.

Credit: Marvel

Welcome back Listen Up readers! If you’ve been wondering where I have been lately, check out my last post “The Power of Voice.” This week I am excited to analyze the Marvel Cinematic Universe’s Doctor Strange. 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.

If you’ve been with me for a while, then you might recall mentions of Dr. Strange from previous posts. As I was going from memory, I wasn’t all that accurate. The way I remembered the story was Dr. Strange’s disability disappears after he learns to use a sling ring, thus the nullification of disability by power gain, which is to say, reinforcing the stereotype that a character can’t have a disability and be powerful at the same time. In addition to differences before and after using the sling ring, the film uses a lot of dark colors after Dr. Strange becomes disabled. After he gains power, however, colors become notably brighter and colorful. This gives the impression that life with a disability is dark and dreary.

Dr. Strange practicing writing shortly after acquiring his disability. Credit: Marvel

This interpretation has several questionable messages, which I had been preparing to write on before I rewatched the film and realized I was missing a lot of points. The film is pretty consistent with portraying Dr. Strange’s disability and the color differences are more or less a reflection of his inner state rather than mirroring the rise and fall of his disability. So let’s dive into my revised take on this!

First off, I will be making some assumptions about Dr. Strange’s disability based on a couple of scenes that take place shortly after he acquired it. In one scene, Dr. Strange is seen struggling to hold a pen and print his name. In another, he attempts to shave, slowly bringing a shaking razor to his face. At the last moment, he decides against it. Based on these scenes, I’m going to assume he has issues with dexterity and grip strength.

Dr. Strange’s writing practice worksheet. Credit: Marvel

Since Doctor Strange is an action film, I paid particular attention to how he fought. Grip strength is of vital importance to throw a proper punch. The tighter a fighter can close their fist, the less prone they are to injuries. If a fighter can’t close their fist properly or if they lack the coordination to land the punch across the first two knuckles of the hand, they are at high risk of broken bones, sprains, and other types of injuries. Grip strength is also important for holding weapons. Dr. Strange, with his disability, is going to have to learn to fight without his hands and conventional weapons. The few times he does use his hands to fight, such as when trying to handle the thugs that jump him in Nepal or when he hits the door of Kamar-Taj after he is thrown out, Dr. Strange screams in pain: supporting my theory that he can’t use his hands in a fight.

Which begs the question, how does he fight?

Shortly after beginning his training, Dr. Strange learns to conquer weapons with magic. He seems to favor having magic tendrils stretched between his hands, which he uses to block blows instead of his bare hands. The tendrils can also be used offensively as a type of whip. A weapon made of magic means he doesn’t need to hold onto it, thus it can’t be knocked from his grip. It makes so much sense and I appreciate the thoughtfulness and consideration on behalf of the writers and fight coordinators. Dr. Strange’s fighting style stays pretty consistent throughout the movie, but there is some variety.

For example, in another part of the movie, Dr. Strange is training with weapons and grappling with Mordo My first reaction to this was to say that the limits of his disability were being nullified, but then I thought about it a little more. Every martial art style in the world has moves that are practiced in the studio but never used in a real fight. The difference between them is the artistic versus the practical. I’ve seen bo staff forms where people jump up and land in a split. Cool? Of course! Practical in a fight? Not so much. If someone is throwing a punch at you don’t dodge it by doing a split. However, being trained to do the splits means you can kick higher and with more control. Therefore, while there are few, if any, practical reasons to use a split in a fight, it is still important to learn the move.

Mordo and Dr. Strange training. Credit: Marvel

Dr. Strange does train with weapons and practices grappling moves in training, but he never uses these moves in a real fight. (With one exception: when he is fighting in the astral plane, his disability doesn’t carry over and his style changes to straight grappling and brawling.) As a martial artist myself, it was cool to see how much thought and effort went into composing Dr. Strange’s fighting style. In later MCU movies, his use of magic has improved so much that he doesn’t need to fight close combat.

In hindsight, because he has to rely on magic more than any other person to be able to attack and defend himself, his disability lends itself to developing a deeper mastery of magic than his ablebodied peers. This idea is recapped in one of my favorite parts of the film when Dr. Strange is talking with the Ancient one, watching the snowfall.

[Ancient One] “When you first came to me, you asked me how I was able to heal Jonathan Pangborn. I didn’t. He channels dimensional energy directly into his own body.”

[Dr. Strange] “He uses magic to walk.”

[Ancient One] “Constantly. He had a choice, to return to his own life or to serve something greater than himself.”

[Dr. Strange] “So, I could have my hands back again? My old life?”

[Ancient One] “You could. And the world would be all the lesser for it.”

In other words, without his disability, Dr. Strange never would have reached a higher potential. Another thing I love about this conversation is that it pushes back against the cure agenda, which is an enormous ethical, political, sociological, and economic debate. The cure agenda, as it sounds, seeks to prevent, cure, or eliminate disabilities with various methods including, but not limited to: abortions of fetuses with disabilities, assisted suicide, sterilization, and social pressures to conform to ablebodiness. The cure agenda operates on the assumption that people with disabilities will always be “lesser,” and secondly, that if a disabled person had a choice, they would always choose to be ablebodied. Of course, the cure agenda is downright offensive to me and many other members of the disabled community. It is, sadly, a modern matter of life and death. You can read more about the harm a cure agenda can lead to in this blog post: “Disability History, Part 3: Aktion T4 and the Holocaust.”

The last aspect of the film I will cover today is Master Hamir, who is another character with a disability. Viewers might remember that he was introduced near the beginning of the film when Dr. Strange mistakes him for being the Ancient One, but his disability isn’t revealed until later. When Dr. Strange stubbornly blames his inabilities to do magic on his disability, the Ancient One asks Master Hamir to provide a demonstration to show that hands are not a requirement to perform magic. But here is what upsets me: when Master Hamir pulls back his sleeve to reveal his missing hand, it’s presented in a way that’s meant to shock the audience. The camera focuses only on his scars and missing hand. This emphasis essentially says that his disability is the defining feature of the character.

Master Hamir. Credit: Marvel

To go into this a bit deeper, people with disabilities face an ongoing struggle to get acknowledgment past their disabilities. Now, make no mistake, many of us are proud to be disabled. It is a part of our identity and it shapes how we see the world. But we are more than our disabilities.

To explain this idea better, I’ll share a story from my own life. Back in the summer of 2018, I was job hunting. As a deaf/disabled person, there are extra barriers in my way to getting a job interview. Many companies conduct a phone interview before conducting an in-person interview. This was the case with my local grocery store. They called me and started asking me a lot of questions. Of course, I had to ask multiple times for things to be repeated. “Sorry, I have a hard time hearing on the phone,” I would say, “Would you repeat that please?” Eventually, the caller said, “Yeah, this isn’t going to work out,” and hung up on me. After that, I was invited to an interview at a local bread baking company. I was lead through the kitchen to an office in the back. Along the way. I noticed the radio was blasting above the noise of the machinery and chatter of the workers. I did the interview and was offered a job on the spot. I politely declined because the noise level meant I wouldn’t be able to communicate effectively.

Yet another employer invited me to a group interview. Since I am not comfortable talking about personal accommodations for my disability in a group setting, I asked for a one-on-one interview. I didn’t receive a reply until two months after the initial interview, by which time I had found other employment.

Then one day, I received a call from Joanns asking me to come in for an interview. It was the second interview I’ve had in months and I was excited at the idea of working in an art supply store. I was particularly excited about the employee discount on fabric!

It was one of the best interviews I’ve ever had. I was chatting and laughing with the interviewer. She asked about my art projects and I showed her pictures of my quilt projects and paintings.

“Rachel, I am very impressed with you,” she said with a smile, “I think you’d be a perfect fit for this job. Do you have any more questions for me?”

I smiled, knowing that I nailed the interview. But now was the scary part. Bringing up my disability. Because there are so many stereotypes associated with being disabled, I wait to discuss it until the employer has a chance to get to know me a little and after we discuss my qualifications. I have found this technique usually works quite well for me. Usually.

“Actually, I do have something else I’d like to discuss.” I said. “I have a disability.”

She raised her eyebrows in surprise.

“I’m deaf.” I pulled back my hair, turned my head, and pointed to my red hearing aids. “So that means that sometimes I have a hard time understanding what other people say.”

When I turn back to her, her smile is gone. Her eyes racked me up and down like I had told her I was some kind of alien from outer space. I had a sinking feeling in my stomach. At this point, most employers start asking questions about my disability to better understand it and my needs. Instead, she sat in silence.

“You don’t look deaf.” she finally said.

I was flabbergasted. What was I supposed to say to that? What do people think a deaf person “looks” like? Trying to save the sinking ship, I asked if she had any questions or concerns about my deafness.

“No.” she stood up from the table and walked toward the door. I realized the interview was over.

“Um,” I stood up to follow her, still trying to salvage the interview. “If I get the job, when should I expect a call?”

She walked me to the front of the store. “We’ll call you.” She refused to look me in the eyes, holding the door open. It wasn’t enough for her to walk me out of the interview, she had to walk me out of the store.

Refusing to show weakness in front of her, I thanked her for the interview and got inside of my car. And then I cried. Big heaving sobs that made me so dizzy I thought I might pass out. I had no idea what I was supposed to do in this situation. I wasn’t even sure if it was illegal for her to walk me out of an interview for being deaf (it was). I didn’t have any money for an attorney, I was a college student for crying out loud. What’s more, even if I did take the matter to court and I was hired, I had no interest in working with the company anymore. But the worst part of it all? Living the fear that I always had as a child, of being denied job opportunities and more because of my disability. That’s what hurt the most. It was a nightmare that became real.

Sometimes it does not matter how talented you are, how many skills you have, how many qualifications, or how much experience you have—when you have a disability, that is the only thing some people will choose to see.

That’s why I was disappointed by how Master Hamir is portrayed only for his disability. He’s an image, not a person. I know exactly what that feels like and it is not a good feeling. It’s being invisible in all but one aspect.

Obviously, I have made some personal connections with Master Hamir and maybe that’s all it is. But I feel strongly that if Master Hamir had a few lines to speak or if he had been shown in the background fighting or teaching others, if there was more to his image than just his disability, I’d probably see him in a different light. As it stands, the way his disability was presented is disappointing.

To end on a positive note, one of the things I loved about the film is all these little, inmate moments and scenes where Dr. Strange is learning to adapt to his disability. He holds a cup of tea with two hands to keep it steady. After he learns to use an electric razor, he starts wearing brighter clothes, showing that he’s growing into his disability. And I love the closing scene where Dr. Strange holds his broken wristwatch in his hands. And in future movies, he frequently wears gloves which can be a form of assistive technology for his hands.

Dr. Strange with a new, more colorful robe and clean haircut after a scene where he learns to use an electric razor. Credit: Marvel

In relation to the scenes I originally interpreted as being nullified because Dr. Strange’s disability seems to disappear, I’ve realized I have overlooked a factor. Not all disabilities are constant. His hands could be steadier one day, but not the next. These scenes might not be reflecting a disappearance of his disability, but rather the inconsistency of it. I have included a few photos below of particular scenes that made me question whether or not his disability was being nullified. Comment below and let me know what you think of these scenes!

Dr. Strange and Won, the serious librarian of Karma-Taj. Dr. Strange is seen holding several heavy textbooks in his hands with no pain or struggle. Credit: Marvel
In this particular fight scene, Dr. Strange is falling, but catches himself on a door handle with one hand. I don’t think I could hang from one hand, let alone catch myself. This move takes a serious amount of strength and trust in your grip. I found myself questioning whether or not Dr. Strange would really be able to do this. Credit: Marvel
Dr. Strange eating an apple and flipping through the pages of an advanced textbook. He has no trouble flipping pages and his hands appear to be steady as a rock in this scene. As I am someone who flips pages for a living (as a medical coder and biller), I have trouble more often than I care to admit, to separate and flip pages. I imagine for someone with Dr. Strange’s disability, flipping pages might be a more difficult task. However, this is also the scene that I think falls the most under my interpretation of disabilities having varying from day to day. Credit: Marvel

Dr. Strange’s next appearance in the MCU will be in Spiderman: No Way Home on December 17, 2021. If you haven’t seen the official trailer for it, here is the video link. He will also be getting a second movie Doctor Strange in the Multiverse of Madness on March 25, 2022, which is rumored to be the next biggest film in the MCU because it will change everything we think we know.

Credit: Marvel

Thank you all for reading today’s post and especially thank you to my readers who have been reaching out to check up on me and for encouraging me to keep writing.

Thank you for your patience as I have not been able to post as previously scheduled. I am still struggling with my mental health, but I am working on building better strategies to manage it. However, I am not sure what my posting schedule will be for the next while. The good news is that I am still working on writing and will be covering some exhilarating topics in the near future! Make sure to sign up for email notifications at the bottom of Listen Up’s home page or follow Listen Up’s Facebook page to stay updated on the latest posts.

Movie Report: Netflix’s The Dragon Prince

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

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

Credit: Netflix

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

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

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

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

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

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

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

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

Keith Nolan

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

Credit: Keith Nolan

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

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

Keith Nolan

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

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

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

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

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

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

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

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

Commander Gren signing with General Amaya, Credit: Netflix

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

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

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

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

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

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

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

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

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!

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

Genre: Historical Nonfiction
Published October 1, 2013

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

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

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

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

Nielsen, page 182

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

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

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

Nielsen, page 56

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

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

Nielsen, page 110
Ellis Island

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

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

Nielsen, page 42

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

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

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

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

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

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

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

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

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

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

Nielsen, page 182-183

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

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

Movie Report: Crip Camp: A Disability Revolution

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

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

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

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

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

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

Lionel Je’ Woodyard, Camp Jened Counselor

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

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

Denise Sherer Jacobson, Camper

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

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

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

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

Judy Heumann, Being Heumann pages 24-25

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

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

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

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

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

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

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

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

Jim LeBrecht

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

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

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

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

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

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

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

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

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

Book Report: Being Heumann: An Unrepentant Memoir of a Disability Rights Activist by Judith Heumann with Kristen Joiner

Genre: Autobiography
Published February 25, 2020

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.

The original cover

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.

The new paperback cover, released February 23, 2021

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.

“Section 504 had redefined disability. Instead of looking at disability as a medical issue, it had made disability a question of civil—and human—rights.”

Being Heumann, page 159

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.

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

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

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

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

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

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

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

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

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

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

Reading with a couple of my nieces and nephews

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

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

Jennifer Keelan-Chaffins, Forward of All the Way to the Top

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

All the Way to the Top is available on Amazon.

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

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).

Harriet McBryde Johnson

“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!

Book Report: Goddess in the Machine by Lora Beth Johnson

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

Brief Summary

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

Warning: Spoilers ahead

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Goddess in the Machine, pages 315-316


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

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

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

Coming August 24, 2021

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

Was this article helpful to you? Comment below and let me know!

Welcome to Listen Up

An Introduction to the story and the person behind the blog

Hello Reader!

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

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

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

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

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

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

Five pages later, the deaf character was killed.

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

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

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

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

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