Genre: Historical Nonfiction
Published October 1, 2013
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.
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.
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. . .Nielsen, page 182-183
“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.”
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.
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