Armchair epilepsy experts

Epilepsy is in the news again in Minnesota, after the head coach of the Minnesota Gopher’s football team, Jerry Kill, had another seizure during a game.  Instead of the typical armchair quarterbacking after a game, commentators and fans are weighing in on a neurological condition most know nothing about and calling for Coach Kill to retire or resign.  The comments follow a pattern familiar to anyone who lives with a disability or chronic illness–not because of what will be said, but because of what won’t be said.

What’s said:

“I just think that for the good of the team he ought to resign.  I mean, he has a duty to the fans!  It would be for his own good to retire.  Really, it’s the best thing to do for everyone involved.  Don’t get me wrong, I don’t have a problem with people with epilepsy!  I’m totally not bothered if people have seizures…”

What’s not said:

“…as long as I don’t have to look at them, or be expected to show compassion when they have a seizure.
…as long as they don’t inconvenience me.
…as long as they are perfect overachievers with inspirational stories of how they overcame all obstacles and never have a bad day.
…as long as they don’t expect me to make accommodations for them.
…as long as they don’t get all “politically correct” and expect me to not make jokes at their expense.
…as long as they don’t expect to make up their own minds about how to live their lives.”

Of course the critics are not going to say any of the above out loud.  They might not even be aware of their own bias, and will vehemently deny any prejudice if you attempt to criticize their words.  But for those of us who live with epilepsy (or pretty much any other disability for that matter), we’ve learned how to translate the language of What’s Said.  We can tell the difference between genuine concern and condescending pity.  Their disguised discomfort from having to coexist with us is not as disguised as they think it is.  And just because they saw a man have a seizure does not mean they’re experts on how he should live his life.


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