What about your legs? They’re defective

My old secondary school is closing down – and rightly so, in my opinion – which has meant I’ve been thinking back over the years I spent there.  It’s easy to remember fun with friends, teachers who shouted too much, breaking a guys’ nose on the hockey field.  But memories and nostalgia don’t get you anywhere.  So I thought back to a biology lesson where we were discussing genetic testing and the consequences.

To the best of my knowledge, I was the only student in that class with a genetic condition and most people knew about as much as I did at the time.  Obviously I got singled out as the insightful one because I had a vested interest in the subject.  I cared, sure, but right then I cared more about pain killers for my banging hangover.  It was assumed that my disabled life was awful and I would obviously want a test to see if any child of mine had the same condition.  It was also assumed that I would then want to terminate the pregnancy.  Lately, gene testing and even tweaking has been the subject of some fierce debate.

Okay, I see the logic behind testing – if there was a chance your child would be affected by some genetic anomaly, most people would want to find out for sure.  Perhaps they might abort, have the baby adopted or put into care, maybe do some research and prepare for the future.  Yay for them.  My parents never had that choice and, if they had, would they have wanted to get rid of me?  It’s a horrible thought.  They had no idea I even had this condition until my teens and I’m guessing it’s a bit late for an abortion then.  If I ever decide to have a child, will I have the test to see if he/she/it has AOA2?  Well, there are a few things to consider.  First is the likelihood: the chances of me conceiving a genetic mutant aren’t that high and unless I mate with a carrier of the affected gene (not a guy with fully manifested cripple disease) it’s not even an eventuality worth thinking about.  Secondly, I know everything vaguely important to life with AOA2 and the house is fully adapted so it’s not like it’s going to be a huge burden or anything.  Whether a baby has a disability or not, it wouldn’t make any difference to my decision in keeping it.  But just finding out whether a genetic defect is present is where the world was years ago.  Now, medical research has enabled people to identify and alter undesirable genetic traits.

Controversy came when the over-privileged wanted to alter cosmetic features.  It has been used because parents already have one child with z disability and feel they can’t deal with another.  I’ve read stories about people with a sick kid who want to create a genetically perfect one to provide healthy stem cells.  Why wouldn’t prospective parents want to alter certain things if it might put a child on a better path in life?  People have been born with conditions forever and most of us turned out great.  Also, who’s to say that gene therapy is improving anything?  It’s just changing who a kid should be on, literally, a molecular level.  Living with a disability is tough but it’s the struggles I have endured and what others see as my imperfections that have made me the woman I am.  I’m not going to deny another person that same opportunity.

I’m intelligent and love learning new things.  I’ve worked incredibly hard and shown real discipline and dedication in earning two degrees.  I seem to be a pretty good writer and I’m quite crafty and creative.  My house is slowly becoming a home and I’m loved by my family and friends.  If somebody in need asked me, I would do whatever I could to help.  My disability is based on one faulty gene.  The other 6 trillion cells in my body make a decent human being.

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