Writing Habits: Life Lessons from Nanowrimo

Happy Halloween Listen Up readers. It’s hard to believe that October is nearly over and that it’s time to plan Thanksgiving and start buying Christmas gifts! I’m sure you’ve all got some fun plans coming up. This weekend my family is having a Halloween get-together. I’m in charge of making the mummy hot dogs and Mom is making a pumpkin-shaped veggie tray!

As fun as October has been, I’m excited for November which happens to be National Novel Writing Month. Commonly known as “Nanowrimo,” hundreds of thousands of writers around the world seek to write 50,000 words (a novel-length manuscript) in just 30 days.

Credit: Nanowrimo

Nanowrimo began in 1999 with 21 participants. Last year there were over 383,064 writers who took up the challenge. You may have been seeing signs appearing at your local library or coffee shops inviting Nanowrimo challengers to come in and write. Nanowrimo is a powerhouse of writing resources, community, and challenges.

Nanowrimo is a nonprofit organization funded by donations that go directly into the creation and support of writers. All services are free and the programs are run by volunteers. A few of the programs they have are the Young Writers Program, Camp Nanowrimo, and Nanowrimo. They also have a shop where anyone is welcome to donate or purchase items to support the programs.

I would not be the writer I am today if it weren’t for Nanowrimo. When I started writing, I was very sporadic. Some days I wrote a paragraph, other days I wrote several pages, and then weeks would go by where I wouldn’t write at all. I was making the same mistakes that all beginner writers go through, which is waiting for inspiration to strike or wasting time trying to phrase a sentence just right before putting it on the page. It’s a natural thing to do because we have an instinct to get things down “right” the first time.

In comparison, professional writers can sit down and almost immediately throw words on the page. Some writers refer to this as “word vomit,” referring to writing down first, unedited thoughts. These thoughts frequently have poor grammar, forgotten punctuation, or are a rumbling of disjointed ideas. In other words, professional writers’ first drafts are so horrendously bad and embarrassing, many vow never to let them see the light of day! I refer to my first drafts as a “dump doc” rather than a first draft.

Nanowrimo is essentially a 30-day marathon of word vomiting. There are other ways to practice word vomiting of course. For example, try setting a timer and writing nonstop until the timer rings. Nonstop as in your pen never stops moving or that there is never a pause in keystrokes. If you are new to word vomiting, I recommend starting with 3-5 minutes and working your way up to longer periods of time. It doesn’t matter if you spend the whole time writing the same word over and over. Sometimes I’ve tried word vomiting a story out, and I get distracted by my thoughts, so I write my thoughts down instead.

This particular exercise was a favorite of my high school creative writing teacher. We would do it once or twice a week. This was the same teacher that introduced me to Nanowrimo. That’s right—one of my high school assignments was to write a novel in 30 days, on top of my other homework. (Granted we were graded on an effort scale and I think there were only three students in the class that managed to get past 50,000 words).

My first Nanowrimo experience was terrible. I hadn’t planned anything out. I was required to write when I had no ideas. I had to write when I wasn’t inspired. I had to throw words on the page when I had a million other things to get done. Some days I wanted to quit writing altogether.

However, I finished the month with a glorious 36,000 word manuscript. It was split between two different stories and had a few random journal entries in which I vented my frustrations of writing. I was embarrassed about everything I had written since it was poor workmanship. I swore I would never, ever, under any circumstances, do Nanowrimo again.

Later on, I began to recognize the impact of Nanowrimo in my life. First off, I got a massive confidence boost from writing such a large manuscript. It was the most I had ever written at once. Then I began to notice other little things, such as writing essays. My friends would spend days thinking about possible topics, but wouldn’t start writing until the last minute. I, on the other hand, had an easier time with it by writing my first thoughts down and working out a topic from there. In general, I was less shy about wasting paper and words in writing classes. I decided Nanowrimo wasn’t so bad after all.

I took the same writing class again. When Nanowrimo came around, I got a total of 52,000 words. My third attempt was during my senior year where I reached a beautiful and golden 58,000 words.

In total, I have done Nanowrimo five times and succeeded twice. The last two times I attempted it, I was in the thick of college. Since November is the final third of the semester, it becomes increasingly difficult to balance schoolwork and life. I could not stay on top of everything while trying to write a novel. Sadly, I gave up on doing Nanowrimo during this time.

Since I have graduated this year, I am excited to once again take on the Nanowrimo challenge! (For this reason, my next blog post will not be until December.)

There are still a few days left before Nanowrimo starts! Writers can join the event through the website, track their progress, set their own word count goal (if 50k is too much or too little), stay informed of Nanowrimo events happening in their local area, get pep talks, free access to writing resources, and participate in an amazing community of writers. The newsletter alone delivers pep talks, writing tips, resources, and publishing advice. While Nanowrimo is in November, you can use the Nanowrimo event features throughout the year to set goals and track your progress.

Here are three tips of my own for doing Nanowrimo and getting writing done in general:

1) The golden rule of Nanowrimo is don’t edit. Forget the backspace key exists. Take it off your keyboard if you need to. If you want to rephrase how something is said, retype the whole sentence in the way you want it to be rather than editing the original. The first draft is to figure out the story for yourself. Revising it comes later.

2) Don’t get fixated on a single scene or sentence. Rewriting (as explained above) a sentence or two is okay, but if you find yourself getting stuck, try typing a summary of the moment instead. You’ll be able to come back and fill it in later while getting enough on the page to keep moving forward.

3) Remember, the goal is quantity, not quality. Everyone wants to be a good writer and so when we write something down that isn’t good at all, it’s hard and makes us start to doubt ourselves and our abilities. Writing is a unique art form in this sense. Every piece of literature starts as something terrible, but even the worst piece of writing becomes art through the practice of revision.

Think of it this way: every story you’ve ever read, laughed at, cried over, fell in love with, or threw across the room was once a terribly confusing, poorly-phrased, and disjointed first draft. Your story is going to be someone’s favorite and they aren’t going to care how bad the first draft is as long as it gets written. The first draft of anything is laying a foundation. It’s like building a house. First, you have to tear up the ground and dig a bunch of holes, making a big mess. It must be done in order to lay the groundwork for the building.

4) Be your own inspiration. Many people, not just writers, make the mistake of waiting for inspiration to strike before doing something. The truth is that motivation follows action. You have to act before you are inspired because acting on what you aspire to do is exactly what will give you the motivation and inspiration to keep moving forward. And this applies to everything in life, not just writing.

5) It is far easier to write from something than it is to write from nothing. That is the goal of Nanowrimo—to teach writers to get that “something” on the page. Once we get something onto the page, we are setting ourselves up for success because we have something to revise. That’s also why a good number of people find it useful to plan their story beats and fill out character sheets because it gives them something to start with.

We, as people, often hold ourselves to an invisible standard. We spend our lives trying to be perfect and beat ourselves up when we fail. We say to ourselves, “I should be better. I know better.” What we fail to realize is that the act of struggling with something is what gives us the experience to do it better. Struggling means you are learning. Struggling means that you are growing. Nanowrimo is not only about getting words on the page, but about working through the challenges we experience on the way. If you take on the challenge, you will become a better writer.

The last thing I’ll share is a personal motto of mine. I repeated it to myself frequently when I’m writing. I am a person that tends to doubt myself a lot. Anytime I feel overwhelmed or lost on a piece of writing, I say “It doesn’t need to be long. It doesn’t need to be perfect. It just needs to be done.” This quote helps me to write but also to get up the courage to publish my words. I rarely feel like my blog posts reach a “finished” stage, meaning I have to publish them before I feel like they are ready, even though I spend hours rewriting. Each post gets rewritten between four to seven times before publication. I have to pick between meeting my deadlines or risk never posting at all. I like to repeat this quote to myself because it gives me courage.

I’ll see you guys in December! Happy Thanksgiving and happy writing!

Are you going to sign up for Nanowrimo this year? Let me know in the comments! Doing 30-day challenges have a lot of health benefits! Check out this Tedtalk to learn more!

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.

Writing Disabilities, Part 2: The Nullification of Disabilities

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Image: Marvel Studios

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

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

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

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

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

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

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

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

FOR FURTHER READING

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

Netflix’s The Dragon Prince – nullification by ignoring limitations

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

James Cameron’s Avatar – is it nullification?

Book Report: 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!

Disability History, Part 3

Aktion T4 and the Holocaust

Today’s post is near and dear to my heart. It is a great example of the disabled community being silenced as almost no one has been taught about the Aktion T4 program. The T4 program was a political mass murder campaign by involuntary euthanasia, which ended up serving as the precursor to the Holocaust. The history that I’ve compiled for this week is, and should be, shocking. As such, I feel that I need to put a warning here that this post will talk about some of the horrendous things that occurred before and during WWII which include: mass murder, eugenics, abortion, forced sterilization, assisted suicide, and the torture of children. I encourage readers to decide for themselves if they would like to engage in this material.

The early 1900s was a dark time for those with disabilities. In addition to facing discrimination in employment, education, architecture, it was also the age of eugenics. This meant that scientists and politicians were trying to shape the human race by eliminating undesirable characteristics. Those with disabilities were especially targeted. In America, new laws passed such as the “ugly laws” which prohibited the appearance of people who were “diseased, maimed, mutilated, or in any way deformed, so as to be an unsightly or disgusting object (1).” Another example is sterilization laws, which allowed disabled people to be sterilized against their consent. America was not the only country to do this. Sterilization laws were also in effect all over Europe. In the Deaf community, oralism (communicating by voice rather than by sign language) was enforced. Deaf teachers were fired while deaf students were punished if they signed. American Sign Language was nearly wiped out of existence. Alexander Graham Bell, largely known for creating the first telephone, used his fame to push for laws that would prohibit Deaf people from marrying or having children.

The purpose behind these laws was to further segregate disabled people from non-disabled people. In addition, they pushed disabled people to fit into the status quo. This discrimination and segregation—particularly the sterilization laws—inspired scientists and political leaders in Germany, who were also heavily discussing Darwin’s ideas of natural selection and survival of the fittest.

In support of these ideas, the Nazi party began producing propaganda that blamed Germany’s social and economic problems on people with disabilities. Anyone who didn’t contribute to the well-being of the society was considered a burden to the point they were called “lives unworthy of living (2).” After the propaganda, came action.

In 1933 the “Law for the Prevention of Hereditary Diseased Offspring” was passed and lead to forced sterilization of people carrying hereditary defects, which was anything from mental illness to deformations to sensory disabilities such as deafness or blindness to biracial children. Many who were sterilized were children, who often did not know what the operation meant until years later. You can hear a few of these victims tell the story in their own words here.

After this, more action came with the registration of disabilities. Political leaders wanted to know how many people with disabilities were in nursing homes, being born in hospitals, and living at home. It became required for doctors, midwives, and nurses to report this information. Once that information was gathered, Aktion Tiergartenstrasse 4 (T4) began. In a nutshell, the T4 program was a campaign of mass murder of people with disabilities. It began in 1939 with the quiet killing of infants and children under the age of 3 who were suspected of having a hereditary disability. Parents did not have a say in their child’s future. If they fought the decision of the doctors, their baby was taken away.

When WWII broke out, T4 expanded to older children, adults, and the elderly with disabilities. Disabled people were being trafficked to special “institutions” and “special sections” where it was believed that they would receive better treatment. In reality, they were being sent to various places to be slaughtered. These were the first instances of mass murder in Germany and, of course, needed to be undertaken secretly. This meant there was a need to develop new technology to kill several people at a time and provide a way to efficiently dispose of the bodies. That’s how gas chambers were invented and why furnaces became the top method of disposing of bodies.

The Nazi party kept T4 secret. Most parents who dropped their children or family members off at these institutions didn’t know they were delivering them to the arms of death. While most adults had the mercy of being killed quickly, for children it was a different story. Children were often locked in rooms and either starved or beaten until dead. Those with mental illnesses were sometimes kept for experiments. One particular doctor, Heinrich Gross, would preserve the brains of disabled children in jars for further studies. He is credited with killing more children than any other doctor under the T4 program and has never been formally charged for these crimes.

I am sad to say that Gross’s victims were not laid to rest until April 28, 2002. Gross kept their brains as part of his collection of study and research, continuing to dissect their brains as late as 1998. (3)

After the success of the T4 program, the Nazi party turned to target Jews, Blacks, Transgender, Homosexuals, interracial couples, and many others. With the new technology developed under the T4 program, they had the means to do mass exterminations the likes of which had never been seen before.

T4 continued through the war until Germany surrendered to Allied powers on May 7, 1945. The last murder of the program took place on May 29, 1945. It was a boy named Richard Jeene who was four years old and classified as a “feebleminded idiot” (4). While the exact number of people who were killed under T4 isn’t known, estimations range from 200,000 to 360,000 (5).

Had the T4 program been prevented or failed, it is likely the Holocaust would never have come to past. From this history, we can see how when one group successfully justifies the extermination or discrimination of another group, there will always be another group to target. Because the disabled community is one of the most invisible and oppressed minorities on the planet, it is not uncommon for them to be the first target.

Unfortunately, discussions about disabilities and eugenics continue to this day. As an example, many believe that disabilities need to be cured or eradicated. Abortion laws around the world often allow fetuses who have been diagnosed with disabilities to be terminated at much later dates than allowed for a non-disabled fetus. This assumes that children with disabilities will have a lower quality of life or be too much of a burden. Another example, some groups are pushing for assisted suicide for disabled people, which would allow someone with a disability to legally seek out voluntary euthanasia. This arises from assumptions that people with disabilities are so miserable that they want to die. This particular issue strikes a personal nerve because I spent most of my childhood wishing I was dead. And then I grew up and I learned about disabilities and the barriers in place that made me feel that way. I developed pride in myself and my disability. I overcome those feelings and now I can’t imagine wanting to die. Assisted suicide is not an answer until we first break down the barriers that prevent disabled people from being fully integrated into society.

Woman walking along the Berlin Wall

A third example is found in efforts of trying to cure disabilities similarly has a mindset that disability makes a person less useful. Whereas focusing on accessibility and building better technology for disabled people focuses on breaking down barriers. If disabilities are completely eradicated we stand to lose so much diversity and innovation. Instead of assuming that disabilities need to be wiped out or that they are a burden, maybe society should look at the barriers that keep people with disabilities from contributing. Instead of saying “people with disabilities are burdens” try saying “what barriers prevent people with disabilities from contributing to society? How can we challenge or remove these barriers?”

One of the reasons I started this blog was to combat the persistent negative views surrounding disabilities. Disabled people are often seen for their disability rather than as people, but we are people first, foremost, and forever. As a nation and as a global village, we are entering into a new age. As I’ve mentioned before, I am part of the first generation of the disabled community, worldwide, to grow up with civil rights. This means that disabled people are no longer segregated from non-disabled people and we are in the process of becoming a more visible community. Perhaps a better way to explain this is with a quote from Judy Heumann’s book.

“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

When I first learned about the T4 program a couple of years ago, I felt like I had been betrayed. Why hadn’t I been taught this in school? Why wasn’t everyone taught about it? We learn about the Holocaust in detail, but nothing about how it came to be. It seemed like such an important detail to leave out. Isn’t that why we learn history? So we recognize the signs if it starts happening again? The T4 program assumed that life can be measured by usefulness while further assuming only able-bodied persons were useful, a stereotype that persists today. I have to wonder if disabilities and eugenics would still be under discussion if more people were educated about T4. Things like selective abortion are not too far off of the beginnings of the T4 program. It is discrimination. It is a matter of life and death. It is important to understand and recognize these things before they escalate into something bigger. Something more terrible.

Something that should never be silenced.

References

  1. Schweik, Susan M, and Robert A Wilson. “Ugly Laws.” The Eugenics Archives, 5 Feb. 2015, eugenicsarchive.ca/discover/tree/54d39e27f8a0ea4706000009.
  2. Cook, Ian. “The Holocaust and Disabled People: FAQ – Frequently-Asked Questions.” Ouch!, BBC, 17 Oct. 2008, http://www.bbc.co.uk/ouch/fact/the_holocaust_and_disabled_people_faq_frequently_asked_questions.shtml.
  3. Erlanger, Steven. “Vienna Buries Child Victims Of the Nazis.” The New York Times, 29 Apr. 2002, http://www.nytimes.com/2002/04/29/world/vienna-buries-child-victims-of-the-nazis.html.
  4. Krausz, Tibor. “You Were Born to Die for Germany.” Tibor Krausz, The Jerusalem Report, 28 Nov. 2005, tiborkrausz.com/html/book_review/You_were_born_to_die_for_germany.html.tiborkrausz.com/html/book_review/You_were_born_to_die_for_germany.html.
  5. Berenbaum, Michael. “T4 Program.” Encyclopædia Britannica, Encyclopædia Britannica, Inc., 21 Feb. 2001, http://www.britannica.com/event/T4-Program.

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.

Disability History, Part 2

Disabilities, Autism, and Neurodiversity in Human Evolution

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

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

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

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

Ribbon for Autism

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

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

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

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

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

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

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

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

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

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

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

References

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

Book Report: Disability Visibility by Alice Wong

Genre: Adult Nonfiction
Published June 30, 2020

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

Warning: Spoilers Ahead

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

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

Alice Wong, Dedication of Disability Visibility

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

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

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.

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