The Balancing Act of Education and Privacy
April 18, 2011 Leave a comment
Every time I find myself in a new environment or with a new group of people, I have a decision to make: to share, or not?
Because of the nature of The Beast, I cannot simply wait until my epilepsy shows itself to tell others. If I have a grand mal, I’m completely incapacitated, and left to the mercy of those that may or may not know what to do. Later, I’ll probably be treated to the indignation of those I hadn’t told, because of course I should have revealed my medical history immediately, to everyone.
However, I have just as much a right to privacy as anyone else. And sometimes? The mental effort it takes to open my entire health history up for all to scrutinize as well as to educate the ignorant about my epilepsy is just not worth it. Sometimes I just want to be a person that has things she keeps to herself. Sometimes I don’t feel like going into lengthy explanations of what epilepsy is. Sometimes I don’t want to share my humiliating experiences. Sometimes I don’t want to be vulnerable.
Sometimes, I just want to be.
A privilege the abled enjoy is the fact that they don’t have to choose to be, they just are.
That’s the decision I have to make, with every new environment or group I choose to enter: to be, or to be the educator, the vulnerable, the open book?
I’ve made that decision countless of times already in my life, and I’ll make it countless more. As I said earlier, I cannot simply choose to wait until my epilepsy shows itself to introduce it. I also, often, cannot wait until I trust the person and feel comfortable revealing this thing about myself, because it’s quite possible my epilepsy will manifest itself in a very public, very violent way before I feel that trust.
So I must weigh the risk of complete vulnerability and helplessness with someone completely ignorant, with the vulnerability it takes to educate, with my desire to simply exist, to live my life as a woman whose medical history is none of your business, thank you.
That I have the ability to make that choice is in itself a privilege. Much of the time, my disability is invisible. That I can feign normalcy, that there are times that I forget, is a privilege.
But even so.