The day had started so promisingly.
Happy Chin was content to be going back to his house, looking forward to seeing his favourite carers again after a 3 week Christmas break, and pleased that we were stopping on the way to pick up his iPad (screen cracked…again!)
I was happy to be going to work and have a break from the caring role for a bit, after nearly 3 weeks of relentless Christmas craziness. We got in the car and rocked into town listening to Triple J, found a car park not far from the iPad shop and sallied forth.
Five minutes to nine – shop shut. Never mind, said I, let’s pop along to Target, you need new socks don’t you?
‘Socks!’ replied a delighted Happy Chin, who just loves socks.
Naturally we couldn’t get through the Target checkout without acquiring a small bottle of coke at 9 o’clock in the morning, but hey-ho, at least he’d had breakfast and brushed his teeth. I never said I was a good parent.
So far, so good. Now it was off to the iPad repair store where we fronted optimistically up to the counter to collect the device.
What could possibly go wrong at this point?
‘Um, just give us a minute to find it,’ said the man.
So we gave him a minute. In fact, we gave him fifteen. By minute 12, all 3 shop assistants were searching fruitlessly for the iPad. HC was entertaining himself by pacing about the shop, the coke in his bottle rapidly diminishing. My heart was sinking at roughly the same rate as the coke level.
‘Can you come back?’ enquired Shop Guy 1.
‘No, you stupid man,’ I replied, ‘we had a very short window to accomplish this errand, a window which is rapidly closing. Any minute this young man will want another coke, I don’t have one, he’ll probably run out of the shop onto Collins Street and I’ll have to chase him. Added to that, I’ve been telling him all morning he’s getting his iPad back, and I’ll have to take him to Kingston without it and he and his carers will endure a week of hell. And I am now late for work thanks to you – get your act together!’
I didn’t actually say all of this, I only thought it.
What I did do was politely explain why we needed the iPad urgently, suggest they loan us one until ours could be found and when that suggestion was rejected, agree to pay for the iPad repair and they could courier it to HC’s house.
At this point my card declined. No worries, I said, I’ll just quickly transfer money from the joint account. Using my mobile phone. Which I’d left in the car. No worries, I said, I’ll just nip along to the bank.
I grabbed Happy Chin by the hand and exited the shop. He was confused by this sudden change in schedule – no iPad, Mum visibly tense – and I sensed his agitation, poor young man. So I abandoned the entire mission, opting to get him to his home and sort the whole mess out by phone later.
We arrived at the car to find a parking ticket tucked under the windscreen wiper. A $130 repair job was now going to cost us $170. Talk about the hidden costs of disability!
Throwing the ticket in the centre console with the broken CDs, random coke lids and crusts of HC’s morning toast, I gunned it to Kingston, cursing all the way.
So it was no surprise after arriving 40 minutes late to work and proceeding with shaking hand directly to the office coffee machine, that I would drop the milk frothing jug, drenching myself, the office fridge and two square metres of carpet in milk.
I literally stood there for about a minute. My co-workers jumped up to help, no doubt thinking ‘Why is she just standing there? Why doesn’t she clean it up?’
I was pondering the injustice of life, that’s why!
Lately I’ve found myself pondering the injustices that affect the lives of people with disability and those caring for them every day. At a recent dinner I was chatting with a group of parents about bits of paper. You know, permission slips from school, parking tickets, rates notices, that kind of thing. The sort of paper that our children all seem to love picking up and carting about with them, gnawing on them, taking them to bed and weeing on them or simply dropping them in some random place where everyone forgets about them. Until that letter from Department of Transport comes 3 weeks later announcing that you now owe twice the amount of the original fine for not paying on time. It’s really not very fair, but you try explaining to the Department of Transport that your autistic child ate your parking fine. It’s not going to work, is it?
We always miss footy colours day at school because Happy Chin has carted off the notice from school, the Lamington and Tech Support returning home to complain about missing out on the sausage sizzle because they didn’t have $2.
And what’s with the forms? You can see from the above anecdotes that giving us bits of paper is a Very Bad Idea, so how come we get twice as many bits of paper to fill out as every other person on the planet (by ‘we’ I mean the parents and carers of people with disability in general, not just our family)? We’re also some of the most time-poor people on the planet, why are you giving us a 29 page form the week after we just filled out (or lost) the last 29 page form you sent? How is this fair?
Don’t even get me started on home repairs. Regular readers will know we are very friendly with our local glazier, electrician and computer store and will soon embark on an intense and probably life-long relationship with a NEW iPad repair store. However, we are financially much less well equipped to cope with funding these lovely people’s overseas holidays, due to a lifetime of part time and casual work, turning down promotions and having to take unpaid leave because we’ve used up all our sick leave on the times respite called us to come and collect our child (again).
And why is it that the people who are most afraid of hospitals (i.e. our children) get to spend the most time in them?
I do realise that these are not all problems with solutions, they are just The Way Things Are and probably complaining about them is not doing any good and I would be better off using my energy doing something more useful, like making dinner, but I’m on a roll so you’ll just have to bear with me. Or, you know, log off and go make dinner yourself. I mean whatever.
But The Way Things Are is so unfair and really sucks and mostly no one knows just how sucky it is for us. Even the little things are incredibly hard to do. It’s so tiring to have to plan every shopping trip like the Dunkirk evacuation, and for 22 years! To have to walk around shopping malls casing every risk, scanning every shopper for a trolley with coke in it, like a secret service agent on the alert for the moment you’ll have ‘remove the principal.’
So, now that I’ve had a rant, here are my suggestions:
- iPad repairs should be government subsidised and technicians available to make house calls.
- A central register for discarded or donated iPads and other technology should be set up so people could purchase used iPads and other devices cheaply or for free.
- Parking fines should be discounted for people with disability, and instead of parking tickets we should receive SMS reminders to our mobile phones when we receive a ticket and again a few days before payment is due. People with disability and their carers should have overdue fees waived.
- Forms should all be online, no paper. And maximum of 2 pages.
- For home repairs, I have a vision of a charity organisation that recruits retired plumbers, electricians and general handy people on a volunteer basis to pop round and effect basic repairs. I’d be happy to provide a cup of tea and a chocolate biscuit.
- Hospitals – we need multi-disciplinary units in existing hospitals specifically for people with disability, with trained workers and specialists, and these should include crisis response teams for when things go badly wrong and endanger carers, family members and the person themselves.
- And lastly, while we’re at it, let’s give every carer a weekend away once a year with a bottle of wine and a massage thrown in!
Thanks for listening.
Oh, and the iPad was found 15 minutes after we left, picked up by Mr August and driven down to Kingston by him. They kindly gave us a $30 discount, so the parking fine only cost $10 – or $70 by the time we get the late notice.