Writing Disabilities, Part 4: Villains and Disabilities

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Movie Report: Netflix’s The Dragon Prince

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Commander Gren signing with General Amaya, Credit: Netflix

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

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

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

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

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

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

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

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

Book Report: 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

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 4: NAD v. Netflix

A lawsuit that shook the internet

Good morning Listen Up readers! Today I am excited to talk about a civil rights lawsuit that helped to make the internet more accessible to people with disabilities. This lawsuit in particular has impacted my life in a big way and it’s cool that I got to witness it happen in my lifetime.

To briefly review, the Americans with Disabilities Act (ADA) was signed in 1990 and established civil rights for disabled people in American. Well, what happened right after that? The explosion of technology and the widespread use of the internet. Because it was drafted before this, the ADA didn’t have guidelines for accessibility in the digital world. This meant that many powerhouses, such as Netflix, were not being made accessible.

Movies have consistently been a huge part of my life. My Mom, in particular, has always loved movies. When my brothers and I were toddlers, my parents would rock us to sleep while watching episodes of Star Trek. As we got older, we would watch movies like Star Wars, What’s Up Doc, Titanic, and The Matrix. Every weekend my family would settle down on the couch, eat cardboard pizza (our nickname for frozen pizza), and watch movies. On Sundays we would watch AFV and Extreme Home Makeover. In those days, there was no streaming entertainment. Even YouTube wasn’t invented yet. If we wanted to watch a new movie, we would either have to buy it in a store (ordering things online was uncommon), see it in theaters, or rent it from a local video store. I still remember wandering through the racks at 3D Video, our local video store. It was a lot like going to a used bookstore, but with VHS tapes lining the shelves instead of books.

When Netflix began, it was the world’s first online DVD rental store. It started in 1997, four months after the invention of the DVD. Since Netflix offered more choices to its consumers, an ever-expanding library, and provided videos in newer technological format, it quickly became popular. We could rent up to two movies at once which would be delivered by mail. Mom always picked the first movie, then the second one would be picked by someone else. There were some spectacular fights over who got to pick the next movie.

In 2007, Netflix introduced a streaming service, which allowed subscribers to watch movies on anything with an internet connection. Waiting for movies to come in the mail was a thing of the past! My family was on board with it from the start. But I noticed there was a problem with Netflix’s streaming service.

Nothing was closed captioned.

As a deaf person, I have to have closed captions. I can’t understand any movie or video otherwise. As a child, I generally spent more time with my nose in a book than staring at a screen, simply because it was hard to understand what was being said. I remember one particular day, I had just come home from school and I laid down on my parent’s bed to flip through channels for something interesting to watch. I stumbled upon a game show where the contestants were dressed in oversized diapers and baby bonnets. Then they had to run through a playroom-themed obstacle course. I watched for almost ten minutes, trying to understand what was being said before I realized they were speaking Spanish.

One of the difficult things about growing up with a disability is isolation. I was never around other deaf people. I never learned how to handle different situations because I’m deaf. I had no deaf people to learn from. No one taught me how to advocate for myself—or when I needed to advocate for my needs. I like to sum it up as “No one taught me how to be deaf.” This isolation means that I grew up not knowing what kind of technology is available to me to use. As an adult, I still don’t know what kind of accessibility options are out there are for me. Every day I’m still learning how to be a deaf person in a hearing world.

As it was, I didn’t know closed captions were a thing until I was about twelve or thirteen years old. When I did discover them, it was by accident! I remember being bored while watching TV (as it was difficult for me to understand the characters talking) and started playing around with the TV remote, pressing random buttons to see what they would do. One of the buttons turned on the closed captions. I was stunned at the white words scrolling across black banners on the screen. I thought it was weird and changed the channel. The words changed too. That’s when it hit me that the words being displayed were what was being said. I could understand everything. I had big fat, tears of joy rolling down my face that day as finished I watching an episode of The Brady Bunch.

After that, I turned the closed captions on everything. Because of the ADA, movies made after 1990 had to have closed captions available. I learned how to turn closed captions on DVDs and how to use the TV captions for VHS. I insisted on the captions being turned on whenever my family watched movies. Later I learned the difference between English subtitles versus subtitles for the deaf and hard-of-hearing (the latter includes sound in addition to speech). Closed captions opened up my world. What’s more, that was the first time in my life that I started advocating for myself and my needs as a deaf person. Which is a vital life skill to have when you have a disability.

So when Netflix started streaming caption-less videos, it affected my life. My family would keep watching movies, but without captions, I was lost on the story. It is boring to watch a movie that you can’t understand. I often preferred to do my own thing rather than watch a caption-less movie. It was a lonely experience. Not that my family excluded me from the activity, rather they often begged me to join them—but I would be so bored and upset if I did, that I found I’d rather be lonely.

“Why aren’t there closed captions?” I would say. “It doesn’t feel fair. They really ought to have closed captions.”

It turns out I was not the only deaf person to say this. Netflix was sued several times by various deaf individuals who recognized Netflix was violating the civil rights of disabled people. But Netflix won each lawsuit.

In addition to not providing closed captions on their streaming service, Netflix decided to raise the price of their mail-only service while lowering the streaming service price. Since DVDs generally have closed captions, this further discriminated against the deaf and hard-of-hearing community. This price gap earned the nickname “the deaf tax.”

Word of this reached the National Association of the Deaf (NAD), a non-profit organization that seeks to promote and protect the civil, human, and linguistic rights of deaf and hard-of-hearing individuals in the United States. The NAD made several public statements and open letters to Netflix over the subject of closed captions. Now, at the time Netflix was working on closed captions, but progress was extraordinarily slow. In 2010, nearly 7,000 movies and TV shows were available to stream. Only 300 of these had closed captions. Clearly, captions were not a priority.

The NAD decided it was time to take things to the next level.

“While Netflix is making progress, which is great it is painfully slow. Further, Netflix does not provide a means for consumers to identify captioned Watch Instantly videos, except by trying to watch them. Looking for a captioned video on Netflix is literally like ‘looking for a needle in a haystack.’

. . . The NAD calls on Netflix, again, to caption all of the videos on its Watch Instantly services now. No exclusion, no discrimination, no special discounts, no exceptions. We do not want to pay more and get less. We want equal access” (1).
Rosaline Crawford (Director of Law and Advocacy for the NAD) in an open letter to Catherine Fisher (Director of Communications for Netflix) on December 17, 2010

In June 2011, the NAD filed a lawsuit against Netflix.

“We have tried for years to persuade Netflix to do the right thing and provide equal access to all content across all platforms. They chose not to serve our community on an equal basis; we must have equal access to the biggest provider of streamed entertainment. As Netflix itself acknowledges, streamed video is the future and we must not be left out” (2).
Bobbie Beth Scoggins, President of the NAD

Netflix had already won several lawsuits over this topic. Their defense was that the ADA was drafted to increase access to physical spaces. Since they were an online service, they had no obligation to make their business accessible. Unfortunately, it was a strong case. As I mentioned before, the ADA had nothing about accessibility for web services or virtual products simply because it was written before these things were invented.

The NAD acknowledge that the ADA was written before the digital age, but argued that it didn’t mean the internet is an exception to the ADA, but rather, lawmakers needed to redefine what a physical space meant in a digital world. People with all sorts of disabilities were being left behind and excluded, which is what the ADA was supposed to prevent.

One year later, on June 19, 2012, the judge ruled in favor of the NAD. Netflix was required to pay nearly $800,000 in legal fees. Their entire library was required to be closed captioned within two years and new content could not be uploaded unless it contained closed captions.

“In a society in which business is increasingly conducted online, excluding businesses that sell services through the internet from the ADA would run afoul of the purpose of the ADA. It would severely frustrate Congress’s intent that individuals with disabilities fully enjoy the goods, services, privileges, and advantages available indiscriminately to other members of the general public” (3).
Judge Ponsor, on ruling for NAD v. Netflix

The lawsuit made waves through the internet. Netflix was a multi-million-dollar business and the powerhouse of streaming entertainment. They were one of the biggest businesses at the time. When they lost the lawsuit, it sent a message to all the other digital giants who thought they were exempt from the ADA.

In the following years, these giants took steps to became more accessible. YouTube continues to work on improving its closed captions and encourages creators to add closed captions to their videos. Hulu, HBO Max, and Amazon Prime worked to add closed captions to all their content. Even Facebook took strides to be more inclusive. When Disney+ came out, everything they had to offer already had closed captions. Accessibility is being recognized as a fundamental need rather than an optional suggestion.

However, there are still a good number of companies that have yet to make themselves accessible. Today, while the ADA has website guidelines, there are no enforceable legal standards for web accessibility. In 2017, regulations were drafted to include digital accessibility in the ADA. Unfortunately, when it came to approving these regulations in 2020, Donald Trump chose to ignore them. As of today, these regulations have yet to be approved and enforced. Until they are, the civil rights of disabled people will always be questionable for web-based services and products.

As for me, I would have been in my last years of high school before Netflix became accessible to me and I could rejoin my family to watch movies. Now, I watch just as much Netflix as anybody else (which is to say, too much)! And every Friday night, you’ll find me sitting beside my family, watching the latest episode, and reading the closed captions.

Don’t forget to watch the Oscars tonight! Three disabled films have been nominated (a record)! For the first time in history, the Oscars stage will look different as it has been redesigned to be accessible to actors and directors with disabilities. The nominees include Sound of Metal (available only on Amazon Prime), Feeling Through (available for free through YouTube), and Crip Camp (available only on Netflix).

References

Crawford, Rosaline. NAD Calls out Netflix on “Deaf Tax”. 17 Dec. 2010, http://www.nad.org/2010/12/17/nad-calls-out-netflix-on-deaf-tax/.
“NAD v. Netflix.” Disability Rights Education & Defense Fund, 7 Mar. 2014, dredf.org/legal-advocacy/nad-v-netflix/.
Leduc, Jaclyn. “NAD v. Netflix ADA Lawsuit Requires Captioning for Streaming Video.” 3Play Media, 26 Mar. 2021, http://www.3playmedia.com/blog/nad-v-netflix-ada-lawsuit-requires-closed-captioning-on-streaming-video/.

Movie Report: Crip Camp: A Disability Revolution

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Disability History, Part 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.

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

Schweik, Susan M, and Robert A Wilson. “Ugly Laws.” The Eugenics Archives, 5 Feb. 2015, eugenicsarchive.ca/discover/tree/54d39e27f8a0ea4706000009.
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.
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.
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.
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.

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.

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

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

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

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

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

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

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

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

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

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

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

References

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

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

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

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

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

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

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

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

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

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

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

Reading with a couple of my nieces and nephews

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

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

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

All the Way to the Top is available on Amazon.

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

Disability History, Part 1

Understanding the word “Disability” and where it comes from

Historical silencing is a term that refers to the dominating narratives that reinforce the power of dominant groups in a way that the contributions of lower-powered groups are ignored and silenced. As the common saying goes, “history is written by the victors.” Historical silencing shows up in ways like how most Americans can name Christopher Columbus as the man who “discovered” the Americas, but they cannot name the tribes of people who were here first. Another example of historical silencing exists in how the contributions of women have been ignored for centuries and have only recently begun to come to light. There is perhaps no group that has experienced more historical silencing than the disabled community.

Disability history may not seem like an important subject to study, but the truth is that the concept of disabilities has shaped the world in more ways than it is possible to name. For example, disability drives human invention. The first telephone was invented by Alexander Graham Bell as a stepping stone in trying to create a hearing aid. Texting was engineered for deaf people but quickly became popular among everyone. But disability has also inspired wars. Like in the case of Adolf Hitler, who killed more than 275,000 people with disabilities in 1939. It was this act that allowed him to expand his agenda to the murder of millions of Jews.

But the most important point about understanding disability history is that it ties into the history of so many other forms of discrimination. Ableism, the discrimination based on ability, is the root of sexism, genderism, ageism, and racism. I talked about this idea a little in Defining Disabilities, Part 1. Women were once considered physically and mentally inferior to men. Similarly, people of color were seen as intellectually disabled but physically superior. This allowed slavers to say that slavery was a kindness by providing work, shelter, and food for the “savages.” While a lot of progress has been made, there are still people who believe these groups are mentally or physically inferior. In other words, these groups are seen as disabled because of certain factors such as skin color or body type. If we, as a nation, wish to progress past discrimination based on race, religion, gender, and age, we must first overcome discrimination based on ability.

I will be the first to admit that I don’t know much about disability history. Three years ago, I didn’t know it was even a thing until after I took a critical literary studies class which introduced me to disability studies. From there I slowly began to learn more and more disabilities. I started learning about the Disability Rights Movement for the first time. I read about the protests. I read about the people who had come before me and fought for me to have the life I have today. It’s been a very personal and emotional journey in discovering my heritage. This is a classic case of historical silencing because there are so few that know this subject and there is no telling how much history is missing. While I may know but a scratch on the surface, I know more than the average person and I’m continuing to learn each day.

The beginning of disability history begins with a single word, both literally and metaphorically. As language is a reflection of the values and perspective within culture, understanding the origins of “disability” provides insight on when the divide between “us” and “them” begins. The word came about in the 1570s, literally meaning “incapacity in the eyes of the law.” The 1500s was also a time of exploration when European countries were establishing colonies around the world. It was no coincidence that “disability” arose from this period.

To give some background on this area, colonialism brought forth a new age as cultures and people were able to interact in ways that were previously impossible. There was a new need to study other cultures and to understand them in order to build trade relations and communicate. That’s when the science of anthropology began. Today anthropology is a important field of study, but it had dark origins.

Colonialism, in a nutshell, was about exploiting other people, their land, and their resources. Anthropology was used to justify taking over these lands. For example, the leading anthropological theory of this period was unilinear cultural evolution, or that all societies and cultures develop on the same pathway. This path had a series of stages from “savagery” to “barbarianism” and finally, to “civilized.” Of course, the Europeans thought of themselves as being at the top of the scale. Using anthropology, they rationalized that they were doing a service by conquering other people. As the highest evolved form of humanity, God wanted the Europeans to take advantage of these opportunities or so they believed. Victims of colonialism were forced to destroy their lands to grow cash crops and enact European customs and ideals. This is how people started being classified based on their skin, abilities, and way of life.

Outside of the European expansion, finding a language with a word that meant “disability” is rare. This does not mean other cultures didn’t have persons with disabilities, but rather that these cultures acknowledged the differences and accepted them without a second thought. For example, Native American tribes did not have a word meaning “disability.” Part of their beliefs centers on the idea that each individual was born to fulfill a specific purpose. So if a child was born with a mental or physical disability, but found they were an excellent water carrier, then that is what the Gods meant for them to do. The child was not seen or labeled as disabled.

This example is from A Disability History of the United States by Kim E. Nielson. Books on disability history are rare and I was fortunate enough to read this while taking a class on anthropological theories. This book has taught me more about disability history than any other source to date. It shows how much of history has been shaped by disabilities but has been silenced.

Understanding the origin of the word “disability” and that it is not, in fact, a common term we can conclude that it was used to classify people in order to establish a hierarchy. In the coming weeks, I will be talking about different events and impacts that disabilities have had in the past and continue to impact us today. I will also talk about events that I have been lucky enough to witness within my lifetime.

Historical silencing is alarming, appalling, and daunting. In the midst of silence, people don’t know what or how much is missing or lost. It is my hope that this blog series will help shine a light for teachers on how important disability history is to include in the classroom and to help writers learn more about what sort of circumstances cause disability, how it impacts society, and provide further insight into the disabled identity.

Did you enjoy this blog post? If so, leave a like or comment below! In addition, if there is a topic you would like to see covered in a future blog post, you can send me a message on the contact page.