Friday, 13 November 2015

Why are we surprised?

In this first nine months of doing my PhD I honestly lost count of how many words I have written and how many I have deleted. Too many. So many that I didn't have any words left in me to blog. My literature review is submitted now and my supervisor is away on holidays so I'm taking an imposed break from research. Writing a blog surely doesn't count though?

There have been so many things to write about since my last blog, and I half started so many inside my head. Now that I'm actually logged in the one thing that is weighing on me is the words we use and how that relates to our perception of disability (not that fair of my thesis topics really!).

The Melbourne Cup race is the biggest horse racing event of the year in Australia. There's the inevitable work lunches and sweepstakes but what happened this year was totally unexpected. Not only was the race won by a female jockey for the first time, but her brother was her strapper; and her brother has T21 (Down syndrome).

The media erupted, marveling at how incredible this all was. A woman won the cup? Her brother has a disability and he is a contributing member of society?  The surprise that echoed through news and social media was little short of condescending. When we are surprised that someone can achieve something, our words are saying what we really think. We didn't believe that they could do that thing in the first place.

A woman won the race? Congratulations to her! But why shouldn't she be able to win? Women can ride a horse just as well as men. A man with a disability has held a job for the last 10 years doing the thing that he loves? Well, why shouldn't he be able to do that? Why are you surprised at either of these thing? Did you think they couldn't happen? Why?

Please don't be surprised that Imogen has an awesome life that is as much the same as other children her age as it is different.  Don't limit her by thinking she can't do things. Congratulate her for all the hard work she puts into being awesome.

Friday, 3 July 2015

Take a trip away from the everyday,

Take a Dreamworld one day holiday.

That was the catchy jingle that used to play on the tv when I was a child, inviting you to come and visit the most exciting theme park in the country, well at least back in the day! The park has changed so much since I was little, but at it's heart it is still the same.

Yesterday on a complete whim, inspired by a friend, we bought 12 month passes for our family to visit the symbol of childhood ecstasy. Kinda crazy right from the outset as the park is much further from my home now than it was as a child and driving long distances with children in the car is rarely appealing to either the parents or the children! Despite this we decided spontaneity was the order of the day and we surprised the girls this morning by jumping into the car before the sun had even broken through the fog.

Without a doubt it was the perfect day. Perfect drive, perfect weather, perfect behaviour, perfectly planned. My inner child was beyond thrilled to share rides like the rapid river ride and the vintage cars with my own girls. My inner parent was bursting with pride to see my girls enjoying rides that I deemed far too scary or nauseating to contemplate!

That catchy tune kept playing in my head.

'Take a trip from the every day, take a Dreamworld one day holiday'

It is so hard to take a trip away from my every day. Even though it has become my normal, disability follows everywhere I go.

I noticed when the other children in the line stair at Imogen when she acts a little crazy. How to I tell them that she is just very forward in introducing herself and sometimes goes over the top trying to impress other kids.

I noticed when I saw another family with an older daughter with Down syndrome as they helped her off a ride. Will I always have to help Imogen negotiate physical obstacles?

I noticed when she was stuck on the dodgem cars and the attendant failed to help her. Did she just assume Imogen wouldn't understand how to operate the car?

These thoughts are so constant, sometimes fleeting, other times lingering, but they NEVER take a one day holiday.


4 hours of driving
7 hours at a theme park
3 amazingly brave girls
0 tantrums or tiffs

What an incredible day!

Tuesday, 16 June 2015

9 Years a Superhero

The lead up to Imogen's birthday always involves lots of planning on her behalf, counting down of sleeps and plenty of excitement. So of the pre-birthday conversations went like this.

Via Facebook from her Grandpa
To Immy from Pa. What would you like for your birthday?
I Wold. Like A. Cape. Plecs. From imm

 A conversation during school drop off
Family friend: What do you want for your birthday Imogen?
Imogen: Superpowers.
(Wait for it. It gets better!)
Friend's child: You can't just wish for superpowers and then get them.
Imogen: I can make my own decisions.

I knew that I wanted to blog on the anniversary of my life irrevocably changing,  but I didn't know what to say that I haven't said before.  Imogen gave me the answer. Her superhero theme inspired me.

While her self chosen alter ego is 'The Boss of the Books' Imogen is without a doubt a super hero. She changes lives. When I started this blog and the Facebook page it was a bit self indulgent. I've come to realise that by sharing our story, and noramlising disability and chronic illness, Imogen is without a doubt changing the way people think.  I am grateful to all the people who leave comments on our page, and even more touched by the private messages I receive from people either touched by the honesty of our story, or who identify with it in some way.

I always knew that Imogen would have an impact on the other kids in her class, but to have students from other grades, across the school come to know, accept and embrace Imogen is something I could never have imagined. Imagine my surprise when Imogen's birthday plans took an unexpected turn.

There was a time that we were terrified of sending Imogen to school. Our own schooling taught us that those with disabilities were shunned & ridiculed. We still worry about Imogen's eccentricities and how that impacts on her ability to make & maintain friendships. Never in a million years did we ever think that our daughter would have such amazing friendships that she would be the recipient of a surprise birthday party. Never did I imagine that I would have such incredible people to call my friends.

Imogen saves lives. She has saved my life from the banality I had planned for myself, and raised me up to something incredible.

Happy birthday, my perfect Imogen.

I got a text in the middle of the day inviting us to an 'afternoon tea'.
Unconditional friendship is the greatest gift.

A surprise birthday party feast is what we got.