Writing Disabilities, Part 1

Three Ethical Questions on Writing Inclusively

If you’ve been hanging around for a while, then you know I started this blog because there are not many disabled characters or disabled voices on the literary market. I have been planning this writing series since the day I started thinking about creating a blog. If you haven’t already, check out the “Disability History” series as it provides a strong base for understanding disabilities as built by cultural means, which lends itself to world-building and designing characters with disabilities.

First, a little side note about this blog: I will not be posting next week as I have switched to working full-time recently and have since been struggling to keep a work-life balance. Since May is Mental Health Awareness month, I have decided to take a short break because I have been feeling some burnout from my new schedule. I am considering switching to writing posts every other week instead of every week, so I’ll keep you guys in the loop about what I decide to do. And don’t forget to check your mental health too. It’s okay to not be okay. What is important is to take care of yourself and reach out. No one should have to fight alone.

From the moment I learned to read, I always had my nose in a book. Every recess, I would take two steps out the door, sit on the steps, and read while all the other kids ran around playing. When I was ten, I started writing my first novel, which was terrible, but my teacher kept encouraging me and so I never stopped writing. Now I am a graduate of Weber State University with a Bachelor’s degree in Creative Writing. Throughout my life, I have been unconsciously educated and observing trends regarding disabilities in stories.

While I did not have the knowledge or words to explain the things I was seeing until I got to college, I was recognizing the absence of disabled characters by the time I was eight or nine years old. When I took a nonfiction writing class, I struggled to write about myself. I had no idea how to put my disability on the page because I had never been exposed to work by other disabled authors. In trying to find tips to help me, I found nothing. Instead, I went through a long process to develop my methods and ideas for writing disabilities. It has been a life-long undertaking and I’m still learning. I am proud to share my experiences with you and to give valuable writing advice for anyone who wants to know how to write characters with disabilities better.

My philosophy is to encourage all writers, regardless of whether they are disabled, nondisabled, had a disability in the past, are not disabled but have a family member who is, or identifies anywhere in between. It is not my intention to tell writers how to write or what to write. Rather, the goal is to equip writers with tools, perspectives, ideas, and a deeper understanding of what it means to be disabled to apply to their writing.

So, why is there such a gap of disabled characters and authors with disabilities in the literary world? There are several reasons for this. Disabled people have been oppressed for centuries, which means that they are often an afterthought and more commonly, people believe they aren’t worth telling stories about. Over the last few decades, these ideas have been increasingly challenged as the disabled community has received civil rights and is no longer being segregated from society. Though, there is still a long way to go. For example, book publishers tend not to publish works by disabled authors or works with leading disabled characters because publishers assume the disability narrative is not relatable (meaning it will not sell well). Progress has been made in this area and a few publishers are actively seeking out work by disabled writers, but the gap remains.

Another longstanding issue facing disabled authors is, depending on their disability, their manuscripts may have more errors than a nondisabled author. They may not be able to sit at a computer and type or edit. A simple answer to this would be to hire someone to edit or type as needed, but such help is hard to find and frequently expensive. This causes a conflict as publishers expect highly polished work and may not be willing to put in the extra work to be inclusive.

That is a brief introduction to why there aren’t more disabled voices on the literary market. These are barriers that are actively being challenged, especially with the increasing popularity of self-publishing. I believe that we will see an increasing number of disabled writers and characters with disabilities as time goes on.

With that being said, there are ethical questions that are important to discuss when it comes to portraying characters with disabilities. Here are three big questions to help you think about issues in writing characters with disabilities.

1) Referring to characters with disabilities

It is often surprising to nondisabled people that what they think is an appropriate term to refer to someone, turns out to be offensive. For example, deaf and hard of hearing people prefer to be called “deaf” or “hard of hearing” over “hearing impaired.” This is because being called “impaired” has a negative connotation and suggests that the person is broken. Therefore, it is offensive. But the word Deaf represents identity and culture, which is why you’ll see it capitalized in some contexts. This idea is confusing to nondisabled people because “hearing impaired” sounds more polite to them.

This concept also applies to DeafBlind people and Autistic people. In other cases, such as with mobility devices, a different approach is used. A person in a wheelchair is called “a wheelchair user,” but I’ve seen several works that say it like “a person confined to a wheelchair.” This suggests that wheelchairs are like prisons instead of being a form of assistive technology that enables them to participate more fully in society. It also suggests that being in a wheelchair is a terrible, undesirable thing, but it isn’t. There is no reason why a wheelchair user cannot live a life as full and adventurous as someone who doesn’t use a wheelchair.

If you are not sure how to refer to a character’s disability, google it! Or better yet, connect with someone who has the same disability as the character you are writing. They can be an invaluable resource at making sure your character is accurate and introduce you to new ideas and perspectives.

When referring to disabled people in general, either “people with disabilities” or “disabled people” are appropriate terms. Interestingly enough, there is a lot of debate between which of these phrases are more inclusive, but I’ve found that the majority of the disabled community don’t care if “people” are placed first or second. I don’t care which term is used and you’ve probably noticed I use both interchangeably throughout my blog. Another observation readers might have picked up on is that I use “nondisabled” in favor of “able” or “able-bodied.” Because saying disabled next to abled suggests that one group is “less than” another, I use nondisabled and disabled because it lessens the divide between these communities. The times I do use the terms “abled” or “able-bodied” is when I want to emphasize the differences between these perspectives. You’ll see an example of this later in this post.

Of course, inclusive writing avoids slur words and derogatory terms such as “deaf and dumb” or “midget.” I also include phrases like “what, are you deaf?” or “what, are you blind?” I get really angry when I read phrases like this because they are using disability as an insult while further reinforcing the ableist idea that disabilities are undesirable and having a disability makes someone worthless. What is insulting about being deaf? I am proud to be deaf! What’s wrong with being blind? Or using a mobility device? What is insulting about having a mental illness? Millions of people have these disabilities across the planet. We are not made more or less worthy by having them.

An example of a poor phrase comes from a book I have been reading over the last week, which said: “people suffering from permanent disabilities.” This phrase assumes that all people with disabilities are in a state of constant suffering, especially those with permanent disabilities. As someone with a permanent disability myself, “suffering” is not a word that comes to mind when I think about my disability. If anything, I suffer from the stigmas and stereotypes surrounding my disability than my disability itself.

I find it helpful to think of writing disability in the same way that one would write a hair color. Hair color is often a quick statement or a brief description. “Her hair was dark brown,” or “Her hair was dark, like rain-soaked earth and smelled of wild sea winds.” Hair color is rarely explained any more than is necessary as there are a good number of things more interesting about the character than their hair color. When disabilities are involved in a story, it is tempting to over-describe it and try to capture every possible detail, barrier, and aspect of it for the reader. In doing this, the disability comes before the character. If you were to talk about a character’s hair color for a full page or more, it would turn readers off. Writing disabilities are the same way. State what it is, don’t give more detail than necessary (unless it naturally comes up, such as an able-bodied character who accidently leads the way to a flight of stairs while absentmindedly talking with a friend who uses a wheelchair).

2) The Able-bodied writing Disabled narratives

The story of disabilities has been told from an able-bodied perspective many times over, whereas it has rarely been told from a disabled perspective. This has resulted in a predominant image used for disabilities of poor, suffering children and adults, weak and meek, as they are paraded on screens or stages to inspire pity or used as inspiration porn. In other words, disabled people have been represented poorly, if we are represented at all.

This narrative is something that I, among thousands of others, are actively challenging. Think about if a white author and a black author both wrote a story on what it is like growing up black in the deep south. Whose story would be more realistic? Of course, the black author’s because it will have a completely different perspective and be able to pinpoint details about discrimination that a white author, however, educated she may be about discrimination against people of color or how much she can emphasize with their experiences, will not be able to write as deeply as someone who is black.

There are exceptions of course. A parent of a disabled child would be able to write about disabilities in a different way than a parent of a nondisabled child. Going back to the example of black and white narratives, I will bring up The Help by Kathryn Stockett. For readers who are not familiar with the story, The Help is both a novel and a movie that takes place in Mississippi in the 1960s, a hotbed of racism. The main character is a white writer, who becomes interested in recording and sharing the true stories of black housemaids. I think the way Stockett (who is white) approached the story is smart. By using a white character, who will never be able to fully understand what it means to be black, she was still able to talk about discrimination and horrible things that were done in the recent past. Clearly, Stockett is well educated about discrimination, history, and the black community, but she is also respectful of how much she doesn’t know.

From my own experiences in reading works by authors of color versus white authors, the works of the former tend to hit me in the gut more. Their work is educational and often eye-opening. For example, when I read I Am Not Your Perfect Mexican Daughter by Erika L. Sanhcez, there was a single line about how the main character had to have white dolls for her Quinceanera decorations because none of the stories sold dolls of her skin color. That line stuck with me. When I got to stores now, I notice whether or not figurines are inclusive. Like at the local gardening store, I could not find a single gnome, fairy, or other figurines that weren’t white. At a family outing to an aquarium, I noticed a collection of mermaid plushies in the gift shop. They were adorable and sparkly, but all of them were white! It put a bad taste in my mouth, especially because I know what it is like to be underrepresented. I know what it is like to not see yourself reflected in advertisements or toys. It is a sad thing. But my point here is that one line from a book by an author of color has significantly changed my perspective.

That’s why I’m bringing up the question of the able-bodied writing disabled narratives. Now if you are someone who is able-bodied and desperately wants to write a story with a leading disabled character or other disabled characters, by all means, please do so! Beyond a shadow of a doubt, there needs to be more representation of disabled characters. But the point of this ethical question is to make sure that you write respectfully about what you don’t know.

3) Why do you want to include a character with a disability?

This ties a lot into question 2. I have seen several works and movies that involve a character with a disability, only to have the character killed off a few pages later, or to provide comedic relief. Another misuse of disabled character is inspiration porn—meaning that disabled people are objectified for being inspirational, like how women are objectified for their bodies. I’ll be talking more about inspiration porn in a future blog post.

An easy way to figure out if you are writing inclusively (beyond simply involving a minority character), is to ask the questions about the character. What is their purpose? What are their goal(s)? What are their flaws? (It is important to note that disabilities do not qualify as flaws or as obstacles to overcome). Is it to give other characters an inspiring speech (possibly unintentional inspiration porn)? Are you foreshadowing death at the same time that you introduce a disabled character (meaning, are you planning to kill them off)? Are they being used for comedic purposes? Is the character being played on stereotypes?

These questions are to help guide your thoughts and intentions about being inclusive. Because there is a lack of education about the disabled community, the majority of people have no idea how little they know about disabilities. It’s dangerous because people think they can imagine what it is like to be disabled, but disabilities are a much deeper identity than surface level, which is something a writer will never know unless they take the time to research the matter.

Please don’t continue to write narratives that use disabled people solely as sources of inspiration or as a character to be killed off or for comedy. We are people with lives and talents and skills and who are worthy of being told stories of. Give us disabled superheroes. Give us disabled princesses. Put us in positions of power—government leaders, super agents, teachers, doctors, military roles, etc. Those are the stories that we’ve never had. The kind of stories I never got to read as a child.

In conclusion, it can involve a lot of critical thinking when writing a character with a disability. It is a subject that I find intimidating, but I remind myself that every great thing worth doing is going to be intimidating at first. Writers don’t write because it is an easy thing to do. We write because we want to share a connection that surpasses words on a page. Writing enables us to share experiences across languages, cultures, distances, time, and background. We want to expose things, both terrible and wonderous. But above all else, reading and writing helps us to understand

See you all in a couple of weeks! Until then, keep on writing!

I hope you guys enjoyed this introduction and I look forward to sharing so much more! Don’t forget you can follow this blog through by signing up for email notifications or follow my page on Facebook! If there is a topic you want me to cover in the future, don’t hesitate to let me know either by commenting below or sending a message under the Contact page.

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

Genre: Autobiography
Published February 25, 2020

Brief Summary
Judith (Judy) Heumann has been front and center throughout the disabled civil rights movement in the 1960s and forwards. She talks about what it was like growing up as a disabled person, from being denied an education, denied access, and denied her teaching license because being in a wheelchair was considered a fire hazard. Judy went on to become one of the leaders of the Section 504 protest—the longest sit-in of American history. This book tells her story in her own words.

The original cover

Good morning Listen Up readers! This week I am excited to introduce you to Judy Heumann and the Section 504 protest!

Judy holds a very special place in my heart. When I first started learning about the disabled community, disability studies, and relearning what it means to be a disabled person, I came across Judy’s TEDTalk, “Our fight for disability rights—and why we’re not done yet.” As I was listening to her talk about growing up and the protests she participated in, I was overcome with emotion. It was the first time in my life that I heard my history. In school, the disabled civil rights movement was never mentioned. I had no idea how or why I had rights. Judy’s talk was the first time that I heard the names of protesters and the stories of the protests. This history, these stories, are my heritage. And getting that heritage at the age of twenty-two changed my life. Especially as someone who has spent half my life wishing I was dead. I realized that there were thousands of people who fought for me, who thought I was worth fighting for, and they succeeded. Now, I run this blog about disabilities, literature, and culture. I imagine it’s the first step of many I will take in fighting against historical silencing and oppression.

The new paperback cover, released February 23, 2021

Section 504 was part of the Rehabilitation Act of 1973. It was a tiny section created by a few supportive senators who wanted to sneak in a civil rights provision into the bill. It is important to note that disabled people had been left out of the Civil Rights Act of 1964. It was legal to discriminate against someone with a disability. Businesses didn’t have to accommodate disabled employees or customers. Schools refused to teach disabled children. There were unethical laws such as the “ugly laws” (which outlawed the appearance of a “diseased, maimed, mutilated, or in any way deformed [person], so as to be an unsightly or disgusting object.” But the worst thing that was going on, society was in complete denial that this discrimination existed. Basically, if you were a person with a disability, you were not seen as a person.

“School is how we pass knowledge, skills, and values on to children–for the good of society. In America, school is considered so important, that, since 1918, it has been compulsory.
“For everyone except us.”

Being Heumann, page 21

Section 504 reads “no otherwise qualified handicapped individual in the United States, as defined in section 7(6), shall, solely by reason of his handicap, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance.” It not only acknowledged that discrimination against disabled people existed, but it would force any organization receiving federal funds to become accessible and not discriminate against disabilities. This meant schools, universities, city streets, police stations, hospitals, the government itself—all these things that had been cut off from the disabled community would have to be accessible.

The sneaky tactic worked. The bill passed, but it still needed a signature from the secretary of Health, Education, and Welfare. When Section 504 was understood, it made a lot of people unhappy. No other civil rights act had involved costs before and people didn’t see why the world needed to be made accessible. In 1977, four years after the bill had passed, the disabled community decided to take action.

“In general, institutions don’t like change because change takes time and can entail costs. In particular, the institutions didn’t see the need for spending resources to adapt their buildings, programs, or classrooms for disabled people. It would be too costly, they argued, an unfair financial burden–and how many disabled people really went to university, or participated in x, y, or z specific activity anyway?
“Right there was our catch-22: because the country was so inaccessible, disabled people had a hard time getting out and doing things—which made us invisible. So we were easy to discount and ignore. Until institutions were forced to accommodate us we would remain locked out and invisible–and as long as we were locked out and invisible, no one would see our true force and dismiss us.”

Being Heumann, page 80

Community is a really strong theme throughout this book. In fact, on the first page of her book, Judy says “for any story of changing the world is always the story of many.” The disabled community is very unique because our community isn’t built on blood. For colored people, they have friends and family that share the community experience. Religious groups too. I grew up in a Mormon household and was part of a large Mormon community. But the disabled community isn’t typically bound by blood (granted there are some cases where things like deafness runs in families). We come from every background. Some of us are black, some of us are gay, some of us are Muslim, some of us are atheists—there is no boundary that disability hasn’t crossed. We are the most diverse community on the planet. This intersectional nature of the disabled community played a big role in getting Section 504 signed.

“For too long, we have believed that if we played by the rules and did what we were told, we would be included in the American Dream.
“We have waited too long, made too many compromises, and been too patient.
“We will no longer be patient. There will be no more compromises.
“We will accept no more discrimination.”

Judy’s speech at the Section 504 rally; Being Heumann, page 92

Judy and her friends hosted a rally in San Francisco, near the office of Health, Education, and Wellness who was in charge of enforcing Section 504. They decided to march into the building and talk to the Regional Director, Joe Maldonado. Unfortunately, Maldonado had never even heard of Section 504, meaning that the government had zero intention of ever enforcing it. Our rights were such a low propriety that even the people charged with enforcing them didn’t know about them. Judy addressed the crowd behind her, “We need you to stay with us in the building until the government signs the regulations for 504!”

“For people with disabilities, a sleepover is not as simple as tossing some sandwiches and a toothbrush into a backpack. In addition to personal assistance, a fairly high number of us also require various types of daily medications and have things like catheters that need to be changed, or the need to get turned at night to avoid bedsores. Many people of course had come without a personal attendant, any kind of food, or even a toothbrush.”

Being Heumann, page 98

Seventy-five protesters committed to staying on the first day. Now, this was a coordinated event. Section 504 rallies and sit-ins were happening around the country in Washington D.C., Boston, Seattle, New York, Atlanta, Philadelphia, Chicago, Dallas, and Denver, but the San Francisco protest is the only one the held out. Others were starved or waited out by officials who used tactics such as fake bomb threats, cutting off the power, water, access to food, and communication.

“We were being talked about as if we were a foreign army. The public was stunned. People weren’t used to thinking of us as fighters—when they thought about us at all. And I don’t say that in a bitter way, but in more of an honest way. We were a people who were generally invisible in the daily life of society. I mean, think about it. If you didn’t see us in school, because we weren’t allowed in; or in your place of employment, either because we couldn’t physically access it or because we couldn’t get hired; or on your form of public transportation, because buses and trains weren’t accessible; or in restaurants or theaters, for the same reason—then where in your everyday life would you have seen us?”

Being Heumann, page 103

So why was the San Francisco sit-in successful? The truth is that it wouldn’t have been successful without the help of other minority communities. For example, when government officials cut off access to food, the Black Panthers fought their way past security to bring food and mattresses every single day. This was an incredible sacrifice on their part since they didn’t have a whole lot of funding, but here they were dedicating time, money, and resources for a cause that wasn’t their own. When asked why they replied “You’re fighting to make the world a better place. That’s what our goal is too.”

In addition, there was a local church group that held an ongoing vigil outside the HEW building. Since the protesters couldn’t be seen in the building, having a vigil outside gave news crews something to film and talk about, while bringing awareness to the importance of getting Section 504 signed.

At last, Judy and the other protest leaders were invited to meet in Washington D.C. with various senators to put pressure on Joseph Califano (the current Secretary of HEW) and President Carter to sign Section 504. On Thursday afternoon, April 28, Section 504 was signed and the news spread the next day. On the morning of April 30, well over a hundred protesters walked out of San Francisco’s HEW office.

“I was told there was jubilation on the fourth floor of the San Francisco Federal Building—victorious shouting, hugging, laughter, and, ultimately, crying.
“Because, as it turned out, people didn’t want to leave the building.
“They’d made friends, had fun, fallen in love, and felt fully free to be themselves. And in the process, something magical had happened. In the cocoon of the building, a metamorphosis had occurred.
“’We all fell in love with each other,’ CeCe Weeks explained to a reporter.
“’I’ve discovered that I count as a person,’ a protester told another reporter.
“’Instead of seeing myself as a weak person, I found my strength reinforced by others like me,’ said another.
“. . . They decided to spend one last night together in the building to celebrate.”

Being Heumann, page 147

The Section 504 protest remains the longest sit-in of American history, beginning on April 5 and lasting twenty-six days. It marked the beginning of major social change. It also happened to be the first piece of civil rights legislation for disabled people in the world. Section 504 then paved the way for the Americans with Disabilities Act (ADA), the official bill of rights for disabled people in America, which was another global first. In 2006, an international treaty based on the ADA was adopted, called the Convention on the Rights of Persons with Disabilities (CRPD). The CRPD established civil rights for disabled people by any country that signed it. Currently, the CRPD been signed and ratified in more than 163 countries.

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

Being Heumann, page 159

This is how Section 504 changed the world. Disabilities are universal. No matter where you go in the world, or where you are from, no matter what culture you come across, no matter the color of skin or religious practices, you will always find people with disabilities. Section 504 is not the only event Judy talks about in her book. She also talks about the Capitol Crawl and more current events, such as during the Trump administration trying to weaken the power of the ADA. Sadly, disabled civil rights are constantly under fire.

A recent example of this (which is not in Judy’s book): when Covid-19 first hit America, several states began to draft triage legislation for use in the case that hospitals were overrun. This legislation would help to take pressure off the doctors on deciding who could receive care when resources are scarce. The two groups at the bottom of the list for care were 1) people over the age of sixty and 2) people with disabilities. When I learned about this, I was shaken to my core. And I was angry that my government, who is supposed to support and protect my rights, had decided that I, and millions of other people like me, were expendable in a time of crisis. I was terrified of getting sick and being turned away at the hospital for being deaf. And I had no idea how I could raise my voice and fight against that discrimination. When I told my family about what was happening, they didn’t believe me. “Oh, that’s not going to happen,” they said. It’s that denial that ableism exists that has kept disabled people segregated from participating in society for centuries. All of these things combined made me feel invisible and small—like an ant in the wrong place that somebody was trying to crush under their foot.

I am not currently aware of any triage legislation that has been enforced in America during the pandemic. When these first drafts came to light, several independent law agencies across the country took a stand against it, recognizing that it was a violation of civil rights for both the elderly and disabled. But in other parts of the world, this kind of legislation has been and currently is in use.

Ableism is a very serious matter. A life-and-death matter more often than you think it would be. And before you dismiss that, remember that the problems and issues of disabled people have been dismissed time and time again. So listen, listen up to disabilities. We are fighting to be made visible. We are fighting for the recognition that our problems do, in fact, exist and our needs to be addressed because the world so often dismisses us. People with disabilities are the largest minority in the world and we are the most underrepresented. Our stories are not being told. America loves the narrative that we are charity cases, weak, rare, and a source of objectified inspiration. But we are not charity cases. We are not rare and we are not weak. We are people with dreams and families and lives. We are people that love doing things, even if we do them differently than you’d expect.

Because, above all else, we are human beings.

Don’t forget to leave a like or a comment below. I love hearing from you guys. Thank you for all the support! Being Heumann is a great read for an overview of disability civil rights movement and learning about the disabled identity.

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

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

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

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

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

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

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

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

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

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

Reading with a couple of my nieces and nephews

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

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

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

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

All the Way to the Top is available on Amazon.

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

Book Report: Disability Visibility by Alice Wong

Genre: Adult Nonfiction
Published June 30, 2020

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

Warning: Spoilers Ahead

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

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

Alice Wong, Dedication of Disability Visibility

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

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

Harriet McBryde Johnson

“Preferences based on race are unreasonable. Preferences based on ability are not. Why? To Singer, it’s pretty simple: disability makes a person ‘worse off.’

“Are we worse off’? I don’t think so. Not in any meaningful sense. There are too many variables. For those of us with congenital conditions, disability shapes all we are. Those disabled later in life adapt. We take constraints that no one would choose and build rich and satisfying lives within them. We enjoy pleasures other people enjoy and pleasures peculiarly our own. We have something the world needs.”

Harriet McBryde Johnson (10-11)

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

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

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

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

“You’re fine.” She said.

“What?” I was confused.

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

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

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

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

Elsa Sjunneson (135)

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

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

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

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

Elsa Sjunneson (138)

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

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

“Independence is a fairy tale that late capitalism tells in order to shift the responsibility for care and support from community and state to individuals and families. But not everyone has the personal capacity, and not everyone has family support. And the stories we tell about bootstraps tell us that it’s the fault of an individual if they don’t thrive. They’re just not trying hard enough.

“The myth of independence also shapes what literature looks like and what kind of writing is valued. . . The story of disabled success has never been a story about one solitary disabled person overcoming limitations—despite the fact that’s the narrative we so often read in the media.”

A. H. Reaume (155-157)

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

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

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

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

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

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

Defining Disabilities, Part 2

The Disabled Identity

I was born six years after the signing of the Americans with Disabilities Act. This act is what granted disabled people civil rights. What this means is that I am part of the first generation not to be denied access to education and protected against discrimination in public services and employment. This particular group is called the “ADA generation.” Our society is at something of a turning point in history where the ADA generation has grown up, graduated college, and is now employed in the workforce. They are bringing new perspectives and new ideas to the table because previously they weren’t allowed, which is why it is becoming more common to see the story of disability being brought forth.

Of course, there is still a lot of progress to be made. When I learned about the history of the disability civil rights movement and the importance of the ADA generation, it taught me a lot about my own disabled identity. In part one, I discussed how difficult it is to define what is and what is not a disability. Everyone has different disabilities in the same way that everyone has different abilities. But that doesn’t mean everyone has a disabled identity.

Identity is a complex construction made up of many different parts. I find it helpful to think of identity as being a city. Each block is a different part of your personality and experiences. Within the blocks are buildings, which are the people, moments, and memories that contribute to who you are. Some things are bigger parts of you than others, thus they will take up more space in your city. Maybe you have an entire neighborhood dedicated to your religious experiences. Maybe you are an athlete and you have seven soccer fields all within one mile of each other. Everyone’s city is unique.

To make things even more complex, your city is always under construction where new parts of yourself are being built up. And there are parts of you that have abandoned or grown out of, which remain in various states of decay and marred with graffiti. There are intersections in your city where parts of your identity overlap. The roadways of being a mother overlap with the roadways of being a daughter. Intersections where religion crosses with your heritage. This concept is called intersectionality, referring to the overlapping of socially constructed categories that converge in each individual.

Sometimes intersectionality can cause a person or a group to experience more discrimination than another. For example, I am a woman and I have a disability. Both groups face certain amounts of discrimination, and I experience discrimination on both counts. For another person, they may be a Christian and transgender. A third example, a person of color who was born and raised in Germany, who has immigrated to America. In each of these examples, the people have major parts of their personality that seem to conflict in the outside eye.

I consider these things to be roadblocks. Let’s take one of the previous examples. Susan is a transgender Christian. She’s driving around her city then has to slam on their breaks because somebody put a road-block in their way. “You can’t be Christian and be transgender at the same time,” the stranger says, “It goes against the scriptures.” Susan is forced to take an alternate route, but again, the same thing happens, so she has to take another detour until she finally reaches her destination. Roadblocks are things that society puts in place to try to get people to be a certain way or because society doesn’t acknowledge certain overlaps in identity.

Coming back to disabilities, a good example is how being disabled crosses over with sexuality. Many people assume that disabled people can’t or shouldn’t be attractive or in any way sexually expressive. This shows up in things like adaptive clothing. Adaptive clothing is designed for those with physical disabilities. For example, shoes that use a zipper or velcro for someone who finds shoelaces challenging to tie. Or for someone that struggles with buttons, there are magnetic closing shirts instead. Or clothes with specially placed holes and pockets for a medical device and tubes.

Unfortunately, adaptive clothing is often designed without any sense of style. They look like medical clothing, unattractive, or the adaptation is painfully obvious. This means that some people with disabilities don’t have clothes with which they can express their individuality or sexuality. Imagine going through life without ever being able to wear something that makes you feel pretty or handsome? That’s the reality for some people. Society throws road-blocks in disability city saying, however unintentionally, “Whoa, stop. You are disabled. You can’t be attractive. You can’t have stylistic clothes to express yourself.”

In my city, some of the frequent road-blocks I experiences are when I go to the movie theater, only to find out that they don’t keep their closed caption devices charged. Roadblock, I have to take an alternate route. They start charging two. When the first one runs out of battery, I go to get the second one, which thankfully lasts for the rest of the movie. Another roadblock is when I’m checking out at the store and the cashier asks me a question. I have no idea what they are saying. I have to ask them to pull down their face mask so I can lipread or I ask them to write down what they are saying on a piece of paper—that’s a detour I have to take regularly. When I hang out with a friend and I happen to be driving, I can’t carry a conversation in the car and drive safely at the same time. I have to detour, explain to my friend I can’t understand them while I’m focused on another task, and we wait until we reach our destination to continue our conversation.

Members of the disabled community are used to facing roadblocks and detours every day. We adapt ourselves to a world that wasn’t designed for us. The deaf in a hearing world, the wheelchair user in a society that relies on stairs, the blind in a world that caters to those who can see, the mentally disabled who are ignored and shunned by those who don’t acknowledge or understand that everyone’s minds function differently. Constantly dealing with roadblocks is a large part of the disabled identity.

Another part of identity is pride. This is the flag of disability pride. It was designed by Ann Magill, a woman who wanted something to express her pride in being disabled. The black field represents those who have suffered from ableist violence, rebellion, and protests. It also represents how disabilities are kept in the dark. The five colors represent different types of disabilities and the wide variety of needs and experiences that divide them. The zigzags represent how people with disabilities must constantly adapt and overcome barriers that society puts in our way. The parallel strips represent that even though every person with a disability has different experiences, we also share a lot of the same barriers and experiences. Essentially it says “we are not alone because we have each other” and “we are stronger together than we are apart.”

Disability pride is something that I have struggled with throughout my life. There are some days that I’m proud to be deaf, to be different, and to be an example. I feel like that when I talk about disability studies or when I take my hearing aids out for sparring at karate. But there are moments that I feel ashamed for being deaf too. Like when I can’t understand my two-year-old niece asking me for water until someone else gets it for them. I feel ashamed when I can’t understand the cashier and I end up holding the line. One of my favorite quotes about disability pride comes from Eli Clare, a disabled, queer writer, and activist. “Pride is not an inessential thing. Without pride, disabled people are much more likely to accept unquestioningly the daily material condition of ableism: unemployment, poverty, segregated and substandard education, years spent locked up in nursing homes, violence perpetrated by caregivers, [and] lack of access. Without pride, individual and collective resistance to oppression becomes nearly impossible. But disability pride is not an easy thing to come by. Disability has been soaked in shame, dressed in silence, [and] rooted in isolation.”

I didn’t gain any pride in my disability until I was in my later teenage years. It started with taking a sign language class in high school. Then I got involved in the Deaf community for a short time, playing on the Utah School for the Deaf and Blind basketball team. For the first time in my life, I connected with others like me and my disability was cast in a whole new light. I realized I wasn’t alone and I was a part of something bigger than myself because of my disability. When I first learned to spar in karate, I was uncomfortable taking my hearing aids out. It is a side that I never let others see.

When the time came for me to attend my first belt test where sparring was required, I was afraid of being yelled at by instructors who didn’t know about my deafness and being punished for not following instructions I couldn’t hear. I decided I needed to mark my sparing helmet in some way so that my Sensei could point me out to the other instructors. But at the same time, that felt similar to Jews being marked with a star of David during WWII. I didn’t want to label myself as different.

At my request, my brother made me a special sticker to put on the back of my sparring helmet. The words I had chosen were “DEAF PRIDE.” At first, I was embarrassed, but later found it empowering. Every time I put on my sparring helmet, I knew I was representing an entire community. I knew that such a mark would make people watch me and judge me, how they would think of me as a charity case, how I was excepted not to amount to anything because I was disabled. And despite everything that everyone thought about me, I was still here. And I was proving them wrong.

January 2020 Tournament, 3rd place Sparring

The last thing I want to talk about today is stereotypes. They are one of the most harmful things when it comes to disabilities because they are unique for each individual—no two individuals have the same experience even if they have the same disability. I have found that the best definition of a stereotype comes from Chimamanda Ngozi Adichie in her TEDtalk The Danger of a Single Story. She says, “the single story creates stereotypes and the problem with stereotypes is not that they aren’t true, but that they are incomplete. They make one story become the only story.”

Chimamanda Ngozi Adichie

For example, stereotypes about being deaf will tell you that I am nonverbal, rely on sign language, and if I talk, I have a heavy accent. In reality, I rely on verbal communication, have no accent other than my Utah one, and while I do have some knowledge of sign language, I am far from fluent. At best, I might be able to communicate with the skill and finesse of a three-year-old in sign language. I do rely a lot on lipreading, which is steeped in many stereotypes on its own. For one, lipreading is extremely inaccurate. This is because most sounds of speech are made inside the mouth, nose, and throat. I can only “read” what happens at the front of the mouth. Even the best lipreaders in the world can only understand a third of what a person says.

At the same time, because I don’t fit the stereotype people assume that I’m not deaf or not disabled. I had that happen once, back when I was working at a local fudge factory. We were working on hand-wrapping fudge slices and I was talking something about being deaf. A coworker of mine pipped up, “But Rachel, you aren’t really deaf.”

“What?” I said. (It would be helpful here to say that I have two kinds of what; “what” as in, “I didn’t catch what you said and could you please repeat that” and then I have “what” as in did you really just say that?)

My coworker, thinking it was the first kind of “what,” repeated herself. “You’re not really deaf.”

“Why do you say that?” I asked.

“Well, you have hearing aids. And you talk just fine. You aren’t really disabled.”

I set my fudge slice aside and made eye contact with her. “I have hearing aids because I am deaf. Hearing aids do not correct hearing in the way that glasses correct vision. Hearing aids function like a cane helps someone walk. Not a cure, not a correction, just there to help. Just because you don’t know my struggles and you don’t see the things I have to do every day because I am deaf, doesn’t mean you get to label me as not deaf. What you mean to say is that I don’t fit the stereotype of deafness, which really, doesn’t fit anyone at all. Plus, the reason I talk so well is that I went through years of speech therapy. I was taken out of English, math, and science classes because learning to pronounce “star” was more important than knowing how to do my times tables. People like you-” I stop abruptly, trying to get my temper under control. It takes a moment before I continue. “Listen, I understand that I might not seem disabled. It reflects well on you that you don’t see me as disabled. But most disabled people are people just like me. You shouldn’t believe in stereotypes. Every stereotype I’ve ever heard of is wrong. I am deaf, through and through, whether you believe it or not.”

Disability pride and identity come with being seen and with connecting with others who are like us. The disabled community differs from others because anyone, at any moment, can become disabled. When we refuse to talk about disabilities in classrooms or represent them in books and movies, we are not preparing people to become disabled. We are not teaching that it is okay to be disabled or that it is normal to have a disability. Oftentimes, a character or a person becoming disabled is presented as an “end of the world” or “worst-case scenario” kind of thing. In a way, it is an end. But it is also the beginning of another world. The construction of a new block in a city.

Each and every person who has a disability comes to understand it in a different way. It is a life-long journey. I remember feeling lost as a child, wrestling with the complicated intersections of being deaf. I experienced shame and embarrassment for being different and it wasn’t until I started learning that there were others like me out there that I began to overcome those thoughts and feelings. In writing characters with disabilities, something that is important to think about is their sense of identity and pride. Where does their pride come from? What experiences have they had? What is the disabled community like in your world? Thinking about these things can help writers develop more well-rounded characters. Disabled people are not usually born proud of who they are. It takes a long time to redevelop your sense of identity when you have or develop a disability. It’s a story that isn’t often discussed or written about. I think it’s time we changed that.

What are some experiences that have shaped your city? Comment below and let me know!