A perspective on the world of disability from a mother and an educator. Follow my blog!

Friday, 7 March 2014

My daughter is NOT a word.

These last few weeks have been challenge and a delight all rolled into one. We moved to this idyllic country town for work, but instead found family. People we really love and who love us in return. One of the true pleasures of living in a town where it takes five minutes to drive from one side to the other is that it makes the spontaneous visit so much easier. It is a common event to organise an after school play date as the bell rings to let the kids out. It's easy to change plans and visit a friend. It's easy to say 'stay for dinner' and spend hours in good company. We've had so many visitors lately my Bear has playfully reffered to our house as a drop in center. We couldn't be happier.

One of the not so obvious reason for being happy about the constant stream of people that others might see as intrusions is that we have an opportunity to share the intimate details of our day to day life with others - some are a celebration, others are a commiseration, but it's all honest. We get to dispell the unknown about life with a disability by sharing it with others, and by dispelling it, perhaps make our big girl's life a little bit easier.

You see, the ignorance that I had prior to her coming into my life is still rife amongst other people. Just because she has educated me, brought purpose to my life, and taught me to love beyond measure doesn't mean that everyone else has come on the journey with me. Though I've taken it upon myself to try and spread the word, I still have conversations with teachers who refer to 'the autistic kid', even after we've just had the talk about 'child first' language. Thankfully, those in our close circle are no longer ignorant, because they get to know, get to understand.

ignorance = lack of understanding, fear, hatred, intolerance, impatience 

knowledge = understanding, support, love, opportunities

Ignorance breeds fear because we are biologically program to fear what is different as a matter of survival.  Not knowing about life with a disability can be forgiven as not everyone has that specific life experience.  HOWEVER, once you know you've no excuse, only your own choice to be hurtful.

 When my brother and I were children we grew up calling each other 'mong'. When we said the word it was to mean the other person had done something stupid, that it was worth pointing out that you had failed at something. We said it to hurt the other person, to make them feel less (weren't we great siblings!).  While we never used the R word*, we certainly said 'mong'. I have no idea where we picked it up from but I know we perpetuated its use.**

After my big girl was born, just a few weeks later I was talking to my brother when the word was used, more affectionately than in the past, but still to mean that one of us had done something rather stupid. I was hit by the sudden veracity of that word. The guilt and shame that ran through my body was a tangible physiological experience that I remember vividly at this moment. In an instant my ignorance was gone, my lack of understanding, my intolerance, all gone. In that instant I got it.

When I was 28 weeks pregnant with my little Viking five years later I was having an ultrasound where the sonographer asked me, 'Do you really want to risk bringing another Mongoloid child into the world?'.  There are simply no words to express how I felt at that moment. That this complete stranger could assess my big girl's life as not being worth living. That he could use THAT word to tell me he thought she was LESS than everyone else. After the complete shock had worn off I called his company only to find out he was the manager of the facility. I called his head office to try and educate them about this highly inappropriate word. Two weeks later I received a phone call from the man in question, JUSTIFYING his use of the word. Even after being given an opportunity to know why such a word would be hurtful, he still chose ignorance. There simply is no reason and no excuse to choose ignorance, but many still defend their choice to hurt others with their words. How many parents of children with disabilities need to blog before they'll get it?

I will continue to try and dispel the ignorance. I've no choice really, because I refuse to have my big girl go through life ever being made to feel she is less.

*It is time we Spread the Word to End the Word™ and build awareness for society to stop and think about its’ use of the R-word. Most people don’t think of this word as hate speech, but that’s exactly what it feels like to millions of people with intellectual and developmental disabilities, their families and friends. The R-word is just as cruel and offensive as any other slur. Visit www.r-word.org to make your pledge today.

**  I need to add that my brother is totally awesome and a huge supporter of my big girl. He has been my shoulder to cry on many times and has been the first person I've turned to for impartial advice when I've needed to fight for my girl. Word bro.

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