People-First Language: Person With Narcolepsy, Not Narcoleptic
This article is about my preference for person-first language, such as identifying as a person having narcolepsy with cataplexy, as opposed to narcoleptic and cataplectic.
As a person with narcolepsy, I have been battling stigma regarding my condition since the day of my diagnosis. My early attempts at explaining the nature and severity of my symptoms would frequently devolve into me addressing media portrayals of narcolepsy. I still remember the sting of being referred to as a narcoleptic during my early days after diagnosis. That feeling remains the same today.
What is person-first language?
The person-first language movement originated during the first self-advocacy conference in 1974. Person-first language emphasizes individuality rather than the impairments a person with disabilities experiences. The American Psychological Association advanced the person-first language in 1992. They believe that identity-based language promotes biases, devalues individuals, and expresses negative attitudes. The ultimate goal of the movement is to increase equality for people with disabilities.1
Decades later, the majority of academic journals have replaced identity-first language. In 2010, Congress passed Rosa’s Law. This important federal legislation removed “mental retardation” and “mentally retarded” and instead has inserted “having intellectual disabilities.”2
My parents were role models
I was surrounded by children and adults with disabilities during my formative years. My mom served as the first woman Director of Special Education in Metropolitan Nashville Schools. Both my mom and my dad served on the board of a local non-profit for adults living with intellectual and developmental disabilities.
In our house, the “r-word” was forbidden. To say I am proud of their accomplishments and volunteering would an understatement. Even prior to my diagnosis, the importance of person-first language was near and dear to my heart. There was little doubt my preference for person-first over identity-first language when I was diagnosed having narcolepsy with cataplexy at age 25.
Narcolepsy does not define me
Narcolepsy has had a profound impact on my life. My relationship with sleep has been a central component of adolescence and adulthood. It is impossible to understate narcolepsy’s influence on my life, but it does not define me as a person.
My days are consumed with sleep issues and napping, but I have a medical condition, and the condition does not define me. “What you call people is how you treat them.”3 It is similar for my inner critic: what I call myself is how I view myself. For me, it’s that simple.
This is how I choose to identify myself
I have friends in my community with narcolepsy that choose to identify themselves as narcoleptic. The desire of an individual to choose their preferred language is paramount.
It’s their choice, and I respect their decision. On the same note, I would ask that everyone refer to me as a person with narcolepsy. My hope is that the same movement that has established person-first language in academic journals and the classroom carry over into clinical environments and into doctors’ offices.
Treating individuals as people and not as merely a patient is a theme I have heard over and over again in small groups and personal conversations among people with narcolepsy.
Focusing on ending stigma
Continuing to use identity-first language when treating only perpetuates the issue. Yes, it may take time and conscious focus on making the change, but to the person with a disability, it is worth the effort.
As for me, I vow to focus on solutions to ending stigma and not perpetuating stereotypes of living with narcolepsy. I am the World’s Strongest Person having narcolepsy with cataplexy and I approve this message.
Do you feel that your doctor understands narcolepsy?