The thing about Twitter is that is forces you to choose your 140 characters carefully.
To say what you really think as artfully and briefly as possible.
To be pithy.
Understood.
So when Nicky Wagner gazed out of her inner city high rise window at the twinkling harbour below and found herself trapped by circumstance, she shared her thoughts with her followers like this.
The jaunty little exclamation mark like a little kick in the guts.
There was a bit of a social media outcry which drew the usual backlash of “lighten up” and “sheesh you can’t say anything these days”.
Then came Nicky Wagner’s half arsed “apology” about being sorry if she offended – without acknowledging why, given her portfolio of Disability Issues, her tweet was so tone deaf.
She followed that with a weird justification saying “we all would rather have had the meetings out on the harbour”.
Why? To get away from the annoying disabled people who can’t get onto boats?
She has revealed herself to be the wrong person for the job.
Her tweets are as naive as they are patronising. I don’t want her representing issues pertaining to my daughter because I see no evidence she really gets it.
Eighteen years ago when Claudia was born, we had to start apologising for the inconvenience of her.
It wasn’t something we realized we had to do, until we got the signals from other people that our apologies were expected.
Here are some things said and done to us to make sure we understood just how inconvenient we were:
- A nurse complained that we had been in hospital so long we were in the way.
- A nurse complained Claudia's lack of understanding her made her job harder and the extra effort was annoying.
- A teacher complaining to us that Claudia had “mucked up all the books” which had been given to her to keep her quiet in a corner of the classroom. It was inconvenient to her that she had to reorganize them. We had no control over what happens at school.
- A teacher complaining to us that jotting down information about Claudia’s day, including information about her toileting, was inconvenient to her.
- A school secretary sighing pointedly and telling us how inconvenient it was that a row of hooks had to be removed to accommodate a new accessible toilet for Claudia at school.
- A teacher being furious at our lack of appreciation for a new changing area they had put into the school to accommodate our 5 year old. It was a baby change table attached to the wall. Completely unworkable for a primary school aged child. Taking it out again (why did they put it in?) was going to be horrendously inconvenient.
- Overhearing a Ministry of Education official being briefed on their next meeting (us) and hearing ourselves described as ‘more vexatious parents” and then having to sit through a meeting where there were serious issues without complaining too much because it hurts being called “vexatious” as if our concerns were annoying and trivial and not that real.
- Finding out that “vexatious parents” is in fact a term they use to condemn us all into a single pile of complainers.
- Understanding that they see the meetings with people like us as an inconvenience they have to go through in order to appear concerned.
- Being told (frequently) that events we have been invited to as a family, wouldn’t be “appropriate” for Claudia, that we might find her being there inconvenient.
- Harrumphing, eye rolling, staring at the supermarket regardless, but more so if we take too long to walk down the aisle or Claudia stands shouting at the frozen macaroni cheese or she tries to watch the scanning and numbers of the person ahead of us at the checkout.
- Shushing at parades, outdoor performances and events because she’s excited to be out, while all around us the joyful squeals of young children are smiled at.
These are all reminders of how inconvenient she is to the lives of the able-bodied, the neuro-typical and the busy and active. Even those paid to be around her.
“Sorry” “Sorry!” “I’m so sorry” “Okay, sorry about that” “Oops! Sorry!”
So there she is, our Minister for Disability issues. Letting us know without room for misunderstanding, that disability is inconvenient for her.
She’d rather not be having to deal with meetings about disability.
She’d rather be on the water!
Sigh. How inconvenient it all is!
Sorry Nicky 
But Hey! Cheer up!
After your boring meetings and your annoying job representing issues that have no impact on YOUR life, you can get on with your sailing! Or mountain biking! Or having an afternoon off!
But we can’t. Because disability IS our life. There is not one day in our lives where having a family member with disabilities hasn’t impacted our lives, dictated our decisions, diminished our potential.
The biggest barrier to inclusion in our own life has always been other people’s attitude. Peoples attitudes make or break us.
Her tweet felt like another little face-slapping sigh about how inconvenient people like my daughter are.
We need someone as Minister who has an inkling of insight, a snotch of understanding, a skerrick of enthusiasm, a smidgeon of sincere appreciation for what it is for people like us.
And our Prime Minister calls it a "storm in a teacup”
No Nicky, no Bill – this isn’t a storm in a teacup.
It’s a revelation that you are so woefully out of touch you can’t even see why.
Fiona McKenzie blogs at My Perils of Wisdom.