Access by Various artists

21

Zero

by Fiona Mckenzie

Zero is the amount of privacy in my life.

Zero privacy within my family – and pretty close to zero as a family to the outside world. At least it can very often feel like that.

I have a 16 year-old who still feels entitled to enter any room at any time with no warning and no consideration for what might be happening on the other side of the door.

Those awful toddler days of chatting on the loo, being interrupted on the phone and unwelcome bed guests are with me still.

Even her 12 year-old brother, in the throes of puberty and its crippling need for privacy has to put up with Claudia sitting on the loo shouting at him while he's in the shower. Poor boy.

Until we find another house (with two bathrooms) Claudia attempts to enjoy all our most private moments with each of us, at her whim.

As a family we are also exposed to the scrutiny of others.

People with clipboards and checklists coming to see our spaces, judge our faces, rate our places, manage our "cases".

There are things they are are looking for – mysterious things about which they shed little light.

Do we have a clothes drier? “Umm – yes?” “Mmmmmmm” tick, and a little note is scribbled.

Bloody hell – what is the right answer? And why? What does this have to do with Claudia? 

Often I see Claudia being routinely ignored in the assessment processes.

In the early days there was a someone on our house with a clipboard and a list and a job she could see a career path in, and we were just a young family with a disabled child and she asked me – without averting her eyes from the task at hand "Can she dress herself?"

A few moments passed where I wondered if I was actually there, right there right then, hearing this- or if I was dreaming – and the silence grew and her eyes lifted not from her clipboard – until I said:

"She's right behind you – propped up against cushions because she can't yet sit up. Do you think she can dress herself you unbelievably stupid girl, turn around and see for yourself!"

Except I didn't actually say that. In real life I just said '"Um. No." and hoped that didn't count against us.

But who would know?

As if other people routinely expecting to know the details of life within our four family walls isn't bad enough, technology, excellent as it is for Claudia, can now conspire with her to expose us even more fully.

As Claudia explained earlier this year on her Facebook page:

That's right, I was in the unholy position of confirming to Claudia's teacher that yes, we did know the man taking his clothes off in the pictures, yes it's her Dad, no we're creepy or weird just very, very, very embarrassed now.

But who know photos taken for a laugh on my phone would end up on Claudia's iPad? Well, yes now we know!

My sister has referred to her as "I,Claudia" ever since, Steve has still not been brave enough to appear at school and iCloud has since been disabled on her iPad.

Being assessed and judged by others is pretty awful, especially given the fact the scrutiny is usually to determine some level of support.

So with ORRS (school funding levels) applications and many others, we are advised to stress the disability in order to be clear about how difficult it all is, which is of course, depressing.

Other people surround themselves with positive affirmations on post-it notes on their fridges and monitors ; "You're Beautiful!" "Make Every Day Count!" "I Deserve to look Good in a Bikini!"

For a long time it seemed as though our daily mantras were a ceaseless round of "Our Life is Hard !– So Very Hard!" "We Cannot Do Things Other Families Do!" "We Are Doomed To A Life Of Struggle!"

So we try to consciously surround ourselves with only positive people, use our finely-honed bullshit detectors to release people who are draining and find optimism where we can.

We try to acknowledge and appreciate the things Claudia contributes to our life .

And these are significant ; we listen to a lot of music, Neil Diamond, John Denver, Muse, The Wiggles, Radiohead, Nick Cave, bagpipes and brass bands – she loves them all equally loudly.

Nick Cave's 'Red Right Hand' and the Headless Chickens' 'Gaskrankinstation' get her extremely excited and she stomps around clapping excitedly.

'Silent Night', John Denver's 'Sunshine' and Radiohead's 'No Surprises' make her cry, which is moving and sad. But she insists on sitting through them with tears the sliding down her face.

We have seen every Muppet movie repeatedly and still get to enjoy Chitty Chitty Bang Bang and The Italian Job (the original). We can park in the disabled parks.

We have a family vernacular thanks to her: at night the "mops" come to fly at the lights, we have our friends "Din" and "The Hons"

We have sentences ; "who's that phone?" "because why?" and a unanimous alarmed "ahhhh!" in her exact F# pitch when something goes wrong.

She even named her brother Jasper "Zabba" which has turned out to be pretty passable as far as nicknames go.

These words and phrases created by Claudia are used by us all now – that's our family lingo.

Some of the people necessarily in our lives have been lured in with money (pitiful as these rates usually are); employed to be her babysitter, support worker, friend.

They have to be friends with all of us, they have to be not more insane or more needy than we are, be flexible and fun, tolerant and discrete.

These people are hard to find, and we've had some of the bonkers ones.

But they have been made up for with the truly life-saving gems who we now count as family and on whom we rely.

So while it's undeniably annoying our family doesn't get the levels of privacy others do, and that we still have someone, now adult-sized, appearing at our bedside, throwing back the covers, climbing in with her pointy elbows and demanding a "tickle back", it's just our lot – and that's okay.

Because it's much worse to think of a time when we won't be here to hug her in the night or she won't be with us to demand it.

Which is why it's worth not closing ranks or obsessing about our lack of privacy.

Because if some of the people who arrive in her life stay interested in her life to ensure she has the support she needs, then that is peace of mind. And it will all be worth it.

–––

Fiona Mckenzie blogs at My Perils of Wisdom.

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