As a reader of this text, you may consider yourself normal or you may consider yourself disabled. The decision you make about what to call yourself will determine your feelings about disability. If you’re considering yourself normal or able-bodied, you might have feelings of interest and concern (perhaps even pity) for the disabled—for “them.” If you’re disabled, you might have an insider’s knowledge of your disability but be fairly clueless about other disabilities. If you have a family member with a disability or who is Deaf, you may consider yourself between those two perspectives.
You may not consider yourself disabled, but you might have some physical or cognitive limitations that you are used to and don’t think a big deal—like being depressed, being somewhat obsessive-compulsive, having a learning disability or attention deficit disorder, having a slight hearing or vision loss, being over or underweight, and the like. But even so you might not identify yourself as disabled and others around you might not either.
If you are disabled you may be reading this book using a screen-reader or some other type of computer program. “Normal”1
people might assume that something as straightforward as reading would be what all readers of this book have in common. But if you are blind you might be reading this book by non-visual means; if you have a learning disability, you might find an audio version of the book easier to process. If you are Deaf you might find that reading the captions of some of the blogs mentioned in the book is the best way to go.
In any case, you can begin to see disability isn’t a simple thing. It isn’t necessarily a person using a wheelchair anymore than it is a blind person or someone who is HIV positive. If it isn’t a simple thing, what is it? One way to think of disability is as a set of social relations. Simply looking at someone might not reveal much—social context is all. I might think you are disabled if I see you holding a cane with a red tip, but I might not think of you as disabled if you are swinging a fancy cane. I might not think of my grandfather as really deaf just because he recently began wearing
hearing aids, but I might see a young person with hearing aids and using sign language and conclude that the person is Deaf.2
I might not think of you as disabled if you are wearing glasses. I’d assume you are disabled if I see you navigating with a wheelchair but not if you are navigating with an ATV or a car. Society and social convention set up the terms about who is disabled and who isn’t.
What are the most common myths about disability? See just a few of them here:
Talking About Disability: Terminology and Identity
Before we go any further, we need to get terminology right. In the old days, people with disabilities used to be called “handicapped.” That word still survives in the term “handicap parking.” The term “handicapped” was largely abandoned in the 1970s and 1980s and replaced with “people first” language. The reason for this was the term handicap was thought of negatively by disability activists as relating to someone with “cap in hand”—in other words a beggar, particularly a disabled one. That explanation of the origin of the expression was incorrect. Linguists call this a false etymology in which a current phrase or word is given an incorrect origin story. The actual term “handicap” comes from a game of chance that then became associated with horseracing. A horse that was very fast was saddled with extra weights so that it could fairly compete with other horses. Handicapping in racing was meant to create a level playing field. Thus handicapped meant that someone was burdened (like the horse with the weights on it) over someone who was not. In any case the term was dropped in favor of “person with a disability,” along with other people’s first language expressions like “person of color.” The idea was that the modifying term shouldn’t determine who you were—you were a person first, then secondly someone who just happened to have a disability or happened to be African-American.
But the person-first language began to be opposed by those who wanted to foreground their identity first. People who were proud of their status wanted to be known for that thing that made them unique. In that case, a person of color became an African-American. A person with a disability became a disabled person or simply disabled. Not everyone has come to agree on this shift, and many people who came to consciousness during the people-first movement still feel comfortable using that terminology. But many other people are actively arguing for identity-first language. Those people often use the term “crip” as well “disabled.” That term derives from the pejorative term “cripple,” but has been re-appropriated and revitalized, as has been the term “queer,” removing it from the mouths of those who would humiliate people and placing it squarely in the camp of liberation and freedom. Crip is roughly used the way queer is now, as a term that aims to empower people and also give them a tool to reconsider conventional ways of thinking about disability. Just as queer upsets the traditional ways of thinking about gender and sexuality, so crip gets us to rethink disability, normality, and the evolving accepted methods of studying disability. In this book, you’ll see all these terms being used since there still isn’t unanimous agreement on which is the preferred term.
By the way, when you try to figure out what “disability” means, you might also want to try and figure out what “able-bodied” means as well. The two terms live in a dynamic relationship with each other. To be “able” might mean to be “normal” or “free of defects.” But the word “able” isn’t so simple either. Some people have called “ableism” the insistence on being normal and the accompanying conscious or unconscious discrimination against disabled people. Ableism is like racism, sexism, and other forms of discrimination. Another term, coined by a disability studies scholar, is “normate.” Rosemarie Garland-Thomson came up with the idea to make “normal” seem problematic rather than just a routine term. For example, when “normates” act in “ableist” ways they are assuming that being normal is, well, the norm and that it’s OK to discriminate against people with disabilities.
And not all people with impairments consider themselves disabled. For example, many Deaf people do not consider themselves disabled. Rather they think of themselves as a linguistic minority. They say that they are not disabled, just surrounded by people who do not speak their language. Deaf people are certainly not disabled within all-Deaf environments like Gallaudet University, the national institution of higher education for the Deaf.
When people argue about language, they are often really arguing about politics. It actually does matter if you say you’re more concerned about your identity and don’t want it to play a second-place role in who you are. As with race and gender, disability came to national and international attention through an alliance between political action and scholarly analysis. The disability rights movement was influenced strongly by the civil rights movement in the United States. Activists protested when laws concerning disabled people weren’t enforced, and they protested when there were laws on the books that discriminated against people with disabilities. They also protested when they wanted new laws and regulations made. Some of the issues that concerned these activists were and are about accessible public and private transportation, voting rights, access to public and private accommodations like movie theaters, hotels, stores, and restaurants, and the right to live independently. They protested the inaccessibility of public and private schools and colleges. They fought to make books, television, movies, and the Internet accessible to all kinds of people.
Why make all this fuss about disabled people? Aren’t they a tiny fraction of the able-bodied population? Aren’t there more ethnic and racial groups than there are people with disabilities? Actually, no. People with disabilities make up the largest minority in the United States as well as in most other countries. One in five people in the U.S. are disabled. More than half of the people over 65 are disabled. If you think about it, you can surely find disabled people in your family. Your grandfather with a hearing aid. Your aunt with arthritis. Someone who has vision problems. Someone who walks with the assistance of a cane, a walker, or uses a wheelchair. Someone who needs an inhaler to function. But disabilities aren’t only visible. There are invisible ones like chronic diseases, hearing loss, learning disabilities, depression, and the like. Even obesity can be a disability. The more you think about it, the more you’ll see disability all around you. In fact, it’s often hiding in plain sight.
But what is a disability? Some of the conditions I mentioned don’t necessarily seem like a disability. According to the U.S. Americans with Disabilities Act of 1990 a disability is an impairment that limits a person in one or more life activities. Under that definition you could be obese and not be disabled; or you could be obese and be disabled. The key would be if you were limited in a life-activity such as dressing yourself, communicating, ambulating, and so on. That expansive definition eventually got into trouble in the courts because it opened a can of worms. What if you had a condition like high blood pressure or nearsightedness? You could correct those conditions and yet still be discriminated against for having the condition in the first place. That happened to twin sisters who were air pilots and wore glasses when flying a plane. They applied for a job with United Airlines and were told they didn’t qualify because of their nearsightedness. When they tried to sue, they were prevented when the courts said that since their vision was correctible they didn’t have a disability. Sounds like a catch-22, and it was: they were discriminated against for their impairment but not covered by the law for that same impairment. You can see that disability isn’t that easy to define. Eventually the ADA had to be amended to make sure that people with disabilities were protected whether or not the disability was corrected.
Ways of Approaching Disability: Historical Models
Another way of approaching a definition was tried. According to what is called “the social model” there is a distinction to be made between being impaired and being disabled. An impairment is something that limits you physically or mentally. So you might not be able to walk and therefore might have to use a wheelchair. That is your impairment, but in a college or city that has ramps and elevators that impairment isn’t really a limitation. In fact, as we all know, wheels are very good things, and we can probably date the beginning of most civilizations to the invention of the wheel among other things. If you want to get somewhere, you take a car, bus, or train and speed along. In fact, most marathons are actually won by wheelchair racers who tend to come in an hour ahead of the best runners. Wheels work!
But they don’t work when they come screeching to a halt at a set of stairs. In the social model, the impairment becomes a disability when the environment is not accessible. That disabling could arise as a physical accessibility issue if there are no ramps or elevators, or it might occur if there are no sign language interpreters in a classroom or a lecture. The environment can be thought of broadly to include the political, cultural, and even social environments. If someone gives a lecture on a college campus and there are no sign language interpreters, then a virtual barrier is created that will keep Deaf people out. A YouTube video that has no captioning (or faulty captioning) will also keep a Deaf person out. Facebook postings that include photographs without visual descriptions will keep blind people out. These kinds of cultural and social exclusions are very much a part of life for many people with disabilities.
Check out this viral YouTube video about caption technology gone wrong:
Social discrimination is subtler but just as powerful. Staring at people with visible disabilities creates barriers. Asking probing questions about how a person got their disability creates barriers. And while you might be thinki...