Navigating Epilepsy: The Road Ahead

Epileptic or person with epilepsy: Does it matter?

purple-rose-150x150In Shakespeare’s Romeo and Juliette, Juliette claimed that names and words don’t really matter when she stated: “What’s in a name? That which we call a rose by any other name would smell as sweet…”
But social scientists have actually determined that what we call something can have powerful effects and these effects can sometimes be harmful. For example, calling a child “dumb,” “lazy,” or “nasty” can have lifelong effects on self-image and behavior.
Much discussion about how to name “epilepsy” has been going on throughout Asia. This is because the Chinese name for epilepsy had a connotation of “crazy,” “mad,” “divine punishment” and this impacted other Asian neighbors. It was determined that to associate epilepsy to these very negative characteristics contributed to how epilepsy was seen by the general public and directly worsened life for those with epilepsy.
In a groundbreaking decision, Korea recently announced an official change to the name they use for “epilepsy” to a name that is more scientific and accurate. It is hoped that this change will seep into the view the general public holds of epilepsy. A strong supporting argument in favor of changing the name came from a survey of Koreans by Yoo et. al. (2009) which revealed 31% did not allow their children to associate with someone who had epilepsy, 64% objected to their children marrying someone with epilepsy and 36% thought people with epilepsy should not hold jobs like the general population. This topic can be read in depth at this link: http://ebookbrowse.com/epilepsy-renaming-in-korea-pdf-d356212103.
It has been suggested that in English, the term “epileptic” is troubling in that is defines a whole person based on a single trait. Labels such as this can overshadow the entirety of the person and not only affect how others see the person with epilepsy but also how the person sees her/his self. It is for this reason that there is a push to change what someone who has epilepsy from “epileptic” to “person with epilepsy.” If you are reading this, feel free to chime in with your opinion about it.

5 Responses to “Epileptic or person with epilepsy: Does it matter?”

  1. I have epilepsy. I am epileptic.

    I truly believe the more dialogue on this issue actually accentuates and continues the stigma associated with epilepsy. We are categorizing ourselves. A better use of time would be to continue educating first responders, educators, family and friends on awareness and what to do if someone has a seizure.

    Two very close friends have diabetes. One is very controlled. The other, not so much. She went into convulsions last week due to insulin issues. They have Diabetes. They are diabetic . No shame.

    We are making our own issue. We should stop . It serves no purpose. The false information and old wives tales are quicker ended by saying, “I am epileptic. This is what I look like. It’s not who I am. It does not define me. Let me explain what epilepsy really is, to cease the misconceptions.”

  2. NH, I agree. Asthmatic, diabetic, epileptic. We would be better using our creativity to re-claim the word “epileptic” to use as WE choose. Anybody remember Ian Dury’s “Spasticus Autisticus”? The BBC banned it, but it became a massive hit and started a non PC revolution among some disabled campaigners. Let’s do the same with epileptic, in all societies, worldwide.

  3. I feel very strongly about the wording “epileptic” and “a person with epilepsy”.

    Being a member of Epilepsy South Africa, we are requested to use the term “a person with epilepsy”. Everyone has their own personal view of the word ‘epileptic’, but after 39 years with epilepsy, I still today consider myself as “a person with epilepsy”.

    Regret, to me the word “epileptic” is more of a derogatory word meaning that it defines the ‘whole’ person as being based on a single trait. This can certainly cover the entirety of the person and not only affect how others see the person with epilepsy but also how the person sees her/himself.

    Thank you.

  4. I’m a poet. Sometimes I write about epilepsy, sometimes not.

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