Have you ever been called names? Have you 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 not true.
We continuously use words to identify people as something different, as lesser, or other. We do this with race, gender, ethnicity, sexuality, as well as disability. Once we apply a label to a group of people, it makes it easier for us to treat that group as less than equal. I’m sure you can think of some examples. I won’t write them here.
Our language shapes our attitude. And our position influences our actions. So the words we choose matter. We want people to be treated as human beings. They are more important than the illness that is affecting them. By labeling ourselves with adjectives that describe our disease, disability, illness or limitation, we put ourselves last. But it is not just about how we think about ourselves. This influences a whole different group of people. The people NOT affected by narcolepsy.
I’m a Person with Narcolepsy
I used to assume it was cool if I called myself “a narcoleptic.” I even started a blog with the title “Traveling Narcoleptic.” I can identify as a proud person with narcolepsy. It has certainly shaped who I am today. 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. When I use the word “narcoleptic” I am perpetuating a negative image of narcolepsy. Research has shown that when we use disease first language, there is a greater stigma attached to the individual with the disorder.
“People first language is based on a scientifically established phenomenon that condition first language consciously propagates stigma and dehumanization in the audience’s mind.” -Julie Flygare, founder of Project Sleep
Who Says People First Language Matters?
According to this educational video by narcolepsy advocate and founder of Project Sleep, Julie Flygare, “People first language is 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. You can find links to them on her blog in case you are also a research lover.
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 have a disability or disease makes them less likely to associate negative stereotypes with us and our community.
What does that mean?
In other words, within our own PWN community, people first language may not be an issue. We are unlikely to associate negative stereotypes with ourselves. The study looks at people who do NOT have these illnesses or diseases and how they perceive us. I am not trying to start an “us versus them” paradox here. I am just explaining what the study shows.
How can I use people first language better?
As an English teacher, I do believe that words have an impact. I am changing my vocabulary around narcolepsy after more than ten 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 challenge you to remove “narcoleptic” from your language even within the narcolepsy community. That will make it easier to continue the habit when talking to new people. Anyways, its much easier to type PWN. By using it you demonstrate that you understand the importance of people first language.
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.”
If you are interested in this topic, please don’t stop here. Watch Julie Flygare’s Medicine X Presentation about why the stigma of narcolepsy is such an obstacle and this video that is specifically about recommendations for using people first language.