Looking Up

With the Australian Government announcing $4.5 billion in extra funding for private schools, I can't help but reflect on the many times that budget constraints are cited as justification for inadequate access in state schools.

'Difficult decisions', relating to 'old buildings' are always couched in the context of 'limited resources'. If the access issues relate to a child with a disability, then some kind of retro-fit of access solutions may be offered (even though the building is brand new and therefore should be accessible), but if you are seeking to participate in your role as a parent with a disability, then forget it.

In a nutshell, if you have sufficient disposable income to choose to send your child to a fee paying school, then Scomofo's Government applauds your decision. To celebrate your choice, he will give taxpayer funded financial support to said school.

"But wait," I hear you say (I know. it's like I'm psychic or something)...

What if you have a disability and make the decision to send your child to a state school? Surely the Christian Value-driven (boat arrivals not included), Fair-dinkum-power loving Prime Minister will ensure that funding is made available to bring state school infrastructure up to the standards that have been enshrined in Federal law since 2011?

Not so much.

I'll be honest. When it comes to the language that is being used by the government around this issue, it makes my blood boil.

"there should be affordable choices for non-state schools," says Morrison. He even had the temerity to link the funding to the drought, which for some reason involves Catholic schools (not sure why. Presumably, if you believe in an omnipotent deity, the drought is His doing. Probably best not get involved, I'd say).

But seriously, saying that sending your child to a fee-paying school, religious or otherwise  there should be affordable choices for non-state schools should be a right and one that the Government helps to fund are laughable when limited resources are cited as the justification for buildings that exclude people with a disability, or when remote communities have their funding slashed because living away from a major conurbation is a 'lifestyle choice'.

People used to tell me how Australia doesn't have a class system like the UK. But when you can give your child an advantage by paying for their education, and when government will take money from the schools budget to support that choice? That my friends is a class system, right there.

And we're off!

The media launch of Beyond The Break kicked off this week, with an interview on Channel 7's Daily Edition.

Meanwhile, Darren (Daz) has been flat out with newspaper interviews ready to go to press for the official publication date of the 31st July.

It's a challenge to try and paint a thumbnail sketch of a book that was a year in the making, especially as there are so many elements to the story. I must confess that I am finding the process a little different this time, compared to Looking Up back in 2008, when the story was my own. Daz is keen to do the press stuff together where possible, which makes the process easier as we can work as a double act.

Our situation is unusual for co-authors in that we do share the experience of spinal cord injury (SCI), and as I have always been a keen advocate of peer-to-peer support, the publicity around the book allows for us to examine the difference of talking with someone who has a lived understanding of the day to day life with SCI.

Daz is quadriplegic (tetraplegic) and I am paraplegic, and this means he has to deal with a whole lot of additional challenges that come with upper limb impairments, especially hand function.  I know I bristle at the 'Well done. You are an inspiration for getting on with your life' narrative, and I will spare him that, but I must confess that I am deeply impressed with the way that Daz deals with everything. He is definitely making the most of what is possible with his level of injury, and his ability to run a successful business is baffling to me. But this is nothing to do with his injury. It's because I live a life of chaos and disorganisation. I'd ask him to be my life coach if I didn't think that the experience would be too traumatic for him. Breaking your neck is one thing, but if he were to see my filing 'system', I fear it would finish him off.

I will strive to keep you all more up to date with the book launch and the response. This feels like a really important project for me. I have, through personal experience, come to appreciate the value in sharing stories like Darren's. But as I am also involved in a project built on peer-to-peer support (of which more in due course), Beyond The Break provides an opportunity to use storytelling as a means to help others to face the daunting prospect of life with SCI.

Last week we had a party to celebrate two milestones: I turned fifty, and we've been married for twenty years. The latter a reminder of the best thing that ever happened to me, the former a reminder (among other things) that I very nearly didn't make it past 36.

The weekend fair blew me away. I was overwhelmed by the love in the room, as people came to join us from around the globe, many of whom were at our wedding back in London, and lots of new faces who have become good friends since we moved to Australia in 2013.

The party also presented me with the opportunity to indulge my more theatrical urges, as I hatched a plot which could not have been more satisfying.

For some time now, I have been looking at various 'standing chairs'. These are wheelchairs that provide a mechanism which supports the user into a near upright position, through the provision of support below the knees and a chest strap. There are a few on the market, but I have always been most interested in a fully manual chair, as batteries are heavy and need to be charged.

 There are numerous reasons why standing is a good thing if you have a spinal cord injury:
By putting weight through the legs, it may be possible to aintain bone density and reduce the risks of osteoporosis and bladder and kidney stones, which can be caused by the body re-absorbing calcium from the bones (a risk to astronauts too, I believe).

Then there are benefits for bladder and bowl function that come from stretching the body out and stacking stuff up the way we are built to be stacked.

And, of course, it's good for the circulation, providing the vascular system with a less obstructed root to the lower limbs, while also demanding more work to get the blood back up again.

But as well as the health benefits, there is something else that motivates me. I'm pretty tall (around 6'3'"), and I'm still not used to looking up people's noses, even after thirteen years.

I also like to provide my kids with a reminder of just how tall I am. I'm not sure why, it just feels good.

Instead of gifts for my birthday, we decided to set up a crowd funding page to allow people to contribute to the cost of the chair, and I have been moved by the generosity our friends have shown us. It was this that made me hatch the aforementioned plan.

For our party, we were fortunate to have been loaned an LSA Helium Lifestand wheelchair, by the good people at Permobil.  But this in itself was not theatrical enough. The special magic was provided by local band, Salty, who provided the live music, and who generously allowed me to join them for a couple of songs.

   

Backing band in place (sorry, boys), I managed to swap wheelchairs and make my way through the (by now well-oiled) crowd, and rise up in front of the audience, whereupon I was handed a guitar and proceeded to murder London Calling, by The Clash.

Mid-life crisis? You betcha. But, my, was it fun...

Thank you to everyone who helped to make it happen, and apologies to any Clash fans who may have been offended, but in the words of Joe Strummer, "After all this, won't you give me a smile?"