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

Genre: Historical Nonfiction
Published October 1, 2013

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

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

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

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

Nielsen, page 182

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

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

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

Nielsen, page 56

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

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

Nielsen, page 110
Ellis Island

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

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

Nielsen, page 42

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

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

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

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

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

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

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

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

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

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

Nielsen, page 182-183

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

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

Disability History, Part 3

Aktion T4 and the Holocaust

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

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

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

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

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

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

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

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

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

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

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

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

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

Woman walking along the Berlin Wall

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

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

“We were a people who were generally invisible in the daily life of society. I mean, think about it. If you didn’t see us in school, because we weren’t allowed in; or in your place of employment, either because we couldn’t physically access it or because we couldn’t get hired; or on your form of public transportation, because buses and trains weren’t accessible; or in restaurants or theaters, for the same reason—then where in your everyday life would you have seen us?”

Being Heumann, Page 103

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

Something that should never be silenced.

References

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

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

Genre: Autobiography
Published February 25, 2020

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

The original cover

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

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

The new paperback cover, released February 23, 2021

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

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

Being Heumann, page 21

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

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

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

Being Heumann, page 80

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

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

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

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

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

Being Heumann, page 98

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

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

Being Heumann, page 103

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

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

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

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

Being Heumann, page 147

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

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

Being Heumann, page 159

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

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

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

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

Because, above all else, we are human beings.

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

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.