Language is important, especially when it comes to the way we talk to and about people with health conditions like narcolepsy.
In 1992, the American Psychological Association issued guidelines for its scientific journals to encourage the use of language that put people before their medical condition or disability. For example, “schizophrenics” became “people with schizophrenia”, “epileptics” were replaced by “people with epilepsy” and rather than using overly emotional language like “stroke victim” it would be preferable to refer simply to “a person that has experienced a stroke”.
Exactly the same should apply to those with sleep disorders like narcolepsy, according to the author of a recent article in the journal Sleep. “Using people-first terms (e.g., “people with narcolepsy”) instead of condition-first (e.g., “narcolepsy patients”) or condition-only (e.g., “narcoleptics”) terms signals that a diagnosis is something a person has, not a person’s defining characteristic.”
Referring to someone as narcoleptic implies someone is defined by their condition alone.
This is about much more than semantics. In a recent study, for instance, researchers gave two groups of volunteers a questionnaire about their understanding of epilepsy and attitudes towards people with epilepsy. The questionnaires were identical except for one small and seemingly innocuous change in language. In one group, the text had the preferred people-centred term “person”/“child with epilepsy”; in the other group, there was the less appropriate term “epileptic”/“epileptic child”. In the second group, participants showed significantly more negative attitudes towards the condition, including feeling more reluctant to share a room or marry a person with epilepsy.
The Narcolepsy Charter champions the right for people with narcolepsy “to live in a society that understands and recognises the impact of narcolepsy” and encourages “the ability to talk about narcolepsy without fear or judgement”. Given that referring to “narcoleptics” rather than “people with narcolepsy” is very likely to perpetuate unhelpful stereotypes and negative attitudes, Narcolepsy UK encourages people with and without narcolepsy to put people first and avoid the term “narcoleptics” or “narcolepsy patients” in favour of “people with narcolepsy” or the shorthand “pwn”.