This post is part of the Epilepsy Blog Relay™ which runs from
November 1 through November 30. Follow along and add comments to posts that
inspire you!
Our conversation stuck with me. Jason is a smart person who is completely
aware of the complex interplay of truth, myths, and social constructs around
him. He had his first seizure when in
college and has had a full life, enjoying controlled epilepsy. He is thoroughly integrated into society, one
that he reports never makes him feel diminished when he tells any of its
members about his epilepsy. “They’re
supportive,” he says. What, then, is so
different about Jason’s experience than almost everyone else’s?
Possible Trend: Millennials Are Less Judgmental than Others
I began poking around, asking any and all with epilepsy
about their experiences with the stigma and how people react to them when they
tell them about their seizures. I
realize my research methods leave a lot to be desired, a-hem, but I did spot a
trend: Seemingly, Millennials are less
judgmental of others. A number of researchers
site the trait, playing out in regard to race, ethnicity, religion, sexuality,
gender identity, etc. Could these more
tolerated groups include neurological disorders? After all, if they are making choices in
their lives based on their own circumstances, lifestyle choices, and predilections,
why should they ask anyone else to do or be anything in particular? Reading through responses from 30 people and comparing
those from different generations, I found Millennials were more likely to say
that they didn’t encounter much of a stigma, that they were open about their
epilepsy, and almost always that if someone reacted negatively “that’s their
problem.” And, if this is indeed a real
trend, then that’s progress!
Question: Are Self-Perceptions
Affecting Others’ Perceptions?
The next question: Are the attitudes of these people when
revealing their challenges to those without epilepsy having an impact on how
the others react? Are they self-assured
and unapologetic? Is it a lovely circle
of acceptance, both that of oneself and that of others?
Question: What About Fear?
But that’s not the only question. What about fear? This week, I corresponded with a woman (Yes. A Millennial.) who, despite sensing that no
one in her generation looks down on her, still feels isolated by others’ fear
that she will have a seizure around them.
So, there’s the next hurdle: fear
of the scary for those without epilepsy.
Of course, we need to educate people on how to help someone having a
seizure – in itself, a relief for those who feel helpless when called on to do
so - and assure people that it’s not contagious, a sign of possession,
etc. And if we have a chance, a little
instruction about the whys and types would be good, too. And then there are the videos of different
types of seizures. But there must be
more we can do. I’ve been corresponding
with now retired stigma researcher Dr. Anne Jacoby, formerly from the
University of Liverpool, UK, about the use of videos and hope to find out more.
So that’s where I’ve gotten.
Headline news: The future of
reducing prejudices against epilepsy may lie with Millennials!
And if this indeed is true, a profound "thank you," our friends.
* 2012, Neil Strauss and William Strauss.
NEXT UP: Be sure to check out the next post tomorrow by Kathleen Dale at http://www.livingwellwitheplilepsy.com
for more on epilepsy awareness. For the full schedule of bloggers visit livingwellwithepilepsy.com. And don’t miss
your chance to connect with bloggers on the #LivingWellChat on November 30 at
7PM ET.
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