Did I find myself in Oz this week?
I had a fascinating talk with Jason Baranello, a remarkable person who was diagnosed with epilepsy 13 years ago and never – that’s right, never – came in contact with the stigma so many of us know so well. In fact, when he first meets people, he often leads with telling them he has epilepsy, then instructs on what to do if he has a seizure. Always the response is support and, often, curiosity about the big E. They have questions, and Jason answers them.
Has Jason found what I call "The Emerald City" - a place free from prejudice against epilepsy? Is it too good to be true? Possibly not. A few points of comparison of his experience vs. mine
Factor His Mine
Type of epilepsy Tonic-clonic Tonic-clonic
Trigger Forget meds Forget meds
Frequency Infrequent Infrequent
Work environment Corporate Corporate
Impact on sick time Little Little
And now the fork in the road…
Diagnosed 2003 1976
Generation Millennial Baby Boomer
Self-perception Has nothing to do I’m “the other;” I’m
when first diagnosed with who he is weird.
Open Always Only in last two years
On a superficial level, it looks like it’s a generational thing -- mine, in part, aggravated by my own self-image after being diagnosed in the culture as it was 40 years ago. That may be a factor, but there's much, much more. I’ve read so many personal stories about the stigma that I’m beginning (underscore beginning) to find that many of the current prejudices lie in the workplace, and not quite as profoundly elsewhere, except in the culture of playground bullies. Looking at both, I contemplate…
- The Workplace: Jason and I have not experienced prejudice when we had seizures in the workplace. In fact, there was seeming caring and support from people around us. That said, both of us have experiences in a corporate setting. What have you encountered in either the corporate or other cultures (and how would you describe those cultures)?
- Childhood Bullying: Everywhere we turn are heartbreaking stories of today’s children with epilepsy being bullied, both physically and emotionally. The question is, where did the bullies get these mental models of epilepsy? Civilizations are rife with long-held prejudices against it and other brain-related syndromes, which are handed down to children, most notably via the language used. “What are you, epileptic or something?” “Don’t have a convulsion or anything.” Makes your hair stand up. Right? It should. As we attack stigmas, how can we get at language? We may not be able to change what everyone thinks, but we may be able to affect future generations.
I’m writing this, knowing that many of you who have been injured by prejudice may not like my reductive thoughts. Certainly, you may have been affected in your family and personal relationships. Comment below with your stories so that we all can better understand the nuances of the stigma and what to do to end it.
Together, let’s figure out how to get to the Yellow Brick Road of change and follow it to our very own Emerald City!