People First

Have you ever been called names or heard someone describe you in a way that didn’t sit well with you? Your first instinct may have been to go back to the schoolyard saying, “Sticks and stones may break my bones, but words will never hurt me.” Unfortunately, that is just not true.

Words are used constantly to identify people as something different, as lesser, or other. This is done with race, gender, ethnicity, sexuality, as well as disability. Once we apply that label, it makes it easier for us to treat that group as less than equal. Our language shapes our attitude, and our attitude influences our actions, so essentially, we use those names to justify discrimination and prejudice.

I use to assume it was cool if I called myself “a narcoleptic.” I even started a blog with the title “Traveling Narcoleptic.”  I believed that narcolepsy was just as much a part of my identity as my sex, religion, nationality and so on. I can even identify as a proud person with narcolepsy at times, so I didn’t have a problem labeling myself as such or including it in my “identity”.

But then I came to learn that using people first language is about more than how I feel about myself, and it is not a matter of political correctness. According to this educational video by narcolepsy advocate and founder of Project Sleep, Julie Flygare, “People first language is actually based on a scientifically establish phenomenon that condition first language consciously propagates stigma and dehumanization in the audience’s mind.” Flygare cites various research studies in this video that you can find links to on her blog in case you are also a research lover.

For those that don’t want to dig into the details, in summary, these studies show that the words we choose are important. Using disease first language like “an epileptic” instead of “a person with epilepsy” made a significant difference in how people felt about interacting with that person on various levels. Using people first language, (people WITH disabilities) when communicating with those who do not suffer from a disability or disease makes them less likely to associate negative stereotypes with us and our community.

As an English teacher, I do believe that words are important. I am working to change my own vocabulary around my narcolepsy after about twelve years of using disease first language. I want to challenge you to do the same. So if you are ready to make the change consider replacing the following phrases: a narcoleptic, narcoleptics, a narcoleptic person, narcoleptic people. You can use, a person with narcolepsy, or people with narcolepsy which are both abbreviated within the narcolepsy community as PWN.

I will leave you with one last quote from Julie Flygare’s video: “If it’s important to you to reduce stigma, or to increase dignity and pride and humanization of people with narcolepsy, then you might consider, based on the research findings, the use of People First Language.”


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