I’ve been reading a free copy of Exceptional Parent, a magazine for the parents of special needs kids. It’s quite impressive. The articles are well researched and documented, and they provide deep looks into the lives of living with a kid with disabilities.
An article in the June, 2009 issue titled, “The Basics of How to Reveal Epilepsy” by Robert J. Mittan, PhD caught my eye. Catherine has epilepsy. We typically refer to it as a seizure disorder, but it’s the same thing – epilepsy. I’ve usually just told people she has it. Never thought about the care I should take in divulging that piece of her medical history. Never thought about the fear others might experience wondering if she’ll have a seizure in their presence. Maybe I should rethink it. Maybe not.
A paragraph early in the article really struck me:
When you talk about your epilepsy or your child’s epilepsy, never blame the other person for their misconceptions or ignorance. No one chooses to be ignorant, and we all like to take pride in our own intelligence. If you somehow suggest that the other person is ignorant, you will be insulting them and their intelligence. There is no quicker way to get them to stop listening and learning from what you have to say. All they are truly showing is their cultural training and the fact that they have not yet had the opportunity to begin thinking about epilepsy for themselves. Give them respect and room to start thinking for themselves.
This strikes me as something we should all do regardless of the situation. If we consider the cultural background of a situation rather than the “rightness” or “wrongness” of it, many things lose their stressful significance. If we just consider that someone hasn’t yet been exposed to this experience as part of their culture, we become more patient and open to explaining our views.
Brian and I have backpacked around the world. Thankfully, we opted to do this before kids, and I think it’s one of the reasons I’m able to accept our road in life – I got to do my lifelong dream already. We spent hours asking questions of people we met seeking to learn more about their culture and seeking to understand them better. And we spent hours explaining the US and how and why it works (or sometimes doesn’t, frankly) in our country. We exchanged this information in an open environment motivated by curiousity – not judgment, not fear, not justification. We just sought to understand each other’s ways a bit more.
Frankly, I would rather someone ask me questions about Catherine (most days) than just stare from afar. I hadn’t yet thought of our life as one of a different culture, but I like that imagery. We each have lives of a different culture. Maybe we can approach each other like that.
Cheers,
Ellen
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