We Are People First

Stigma is a serious problem, use People First Language to avoid it

Photo by Allef Vinicius on Unsplash

Labeling people is dangerous. Not just for our personal relationships but for our society as a whole. When we place labels on people, we create a stigma that separates individuals from the community.

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.

Language Matters

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 whatever adjective is affecting them. This isn’t a new concept, but it seems to have been forgotten lately. About five years ago it was a hot topic, check out this story about how the media uses language around the Special Olympics.

Recently I’ve noticed people slipping back into old habits. By labeling people with adjectives that describe their disease, disability, illness or limitation, we put them last. Adding an adjective may seem harmless, but it comes attached to a stigma. Stigma is the result of false ideas people have around a certain type of person they see as different.

Many people inside the affected group do not see a problem with using disease first language. They claim it as part of their identity and have accepted it as a part of who they are. This is fine on an individual level, but when it is used in scholarly articles, medical publications, and in the media it can become more problematic.

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.”

Image by Author

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. Most of the stigma around narcolepsy involves the idea that people with narcolepsy are lazy, incapable, and simply sleep too much. All of these are false.

“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?

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.

According to the video below, 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 other words, within our own communities of people with illnesses or disabilities, 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.

Avoid Superfluous and Charged Language

Another way that we can do right by our friends with disabilities and illnesses is by avoiding using terms that are judgemental, express negativity, or disempowerment. In my opinion, these are a little bit harder to banish from my speech since they appear to be harmless until they are properly scrutinized. This includes avoiding words like “suffer, afflicted, victim, and debilitating.” You can see the full list of suggested words to avoid and better options to replace them with below.

Image provided by ProjectSleep

How can I use people first language better?

Words have an impact. I am changing my vocabulary around narcolepsy and other illnesses 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, insomniac, diabetic, disabled person, mentally ill people, etc. You can use phrases like, a person with narcolepsy or insomnia, people with diabetes, people living with disabilities, or people living with mental illness.

I challenge you to remove disease first language from your vocabulary even within your own communities. That will make it easier to continue the habit when talking to new people. By using it you lead by example and 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… 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.

Life Coach, author, lifelong learner, travel enthusiast, narcolepsy advocate, living in Myanmar, she/her https://www.kaylamdouglas.com

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