My eyes flicker open, it’s 7 am, I roll my head slightly and tap the buzzer attached to my pillow. I don’t quite know what I’m going to get. My door slithers open and thank God it’s a familiar face, however, walking right behind them is a complete stranger. My heart skips a beat. ‘Good morning Mark’, ‘good morning Mike’, I often get two different greetings. This is life in care.
The pleasantries stop, ‘would you like to roll on your back’, and next, I’ve got this stranger chucking my cock in a bottle to take a piss. Instantly it hits me how fucked up my life is. Then the routine begins: medication, breakfast, shit, shower, shave. This specific order is followed each and every single day.
In the mornings, my life is run by the clock.
Which I guess is the same for most people, only I’m not going to a job, I am the job. Disability can be very cruel in this way, and as an added bonus, I also get to hear the inner workings of my ‘home’ while the morning routine takes place. The whinging, the workplace politics, the gossip, and of course all about that lucky support worker about to go on holiday.
I don’t mind if these people have windfalls, but shit I’m trying to wash my hair here. Eek… c’mon I have shampoo in my eyes. The complexities in my ‘home’ are endless.
Truly, I am sorry this has all started to sound a bit whingy, but honestly man, this is a freakin’ weird existence. Like something else I wrote recently, I stated ‘my body is not my own, and at times it feels like a work-station’, well that’s exactly how it does feel sometimes. Especially amid the mid-morning rush.
So umm yeah, that’s my morning, every single morning.
Oh, and all while trying not to cross any professional boundaries. In fact, this is a rather weird point, this is my life right, and I’m often surrounded by people. It seems perfectly acceptable for ‘them’ to ask me personal questions but for me, it’s not. Well, not always with some of the people I’m closer to, but I’m again trying to point out the double standard here.
One last frivolous example: so [myself] living in a workplace, if I want a Panadol, I have to call the on-site nurse and ask for approval. Then it’s written down as a file note. Yet, a visitor asked me the other day if they could have a couple of my panadol’s, then bammo: a glass of water and down it goes. Hmmm…
Can you even imagine this?
Any segregation really is shit. Yet, I must (insert disclaimer here), I must say I’ve also found some awesome friends at ‘home’, and I am lucky enough to frequent many communities that are disability-friendly as well. I go to university, I attend heaps of basketball games, and I frequent many hot-spots around Melbourne. So whereas I am lucky, others are not.
I go out and live a little life; and I can escape from ‘living in a workplace,’ despite the fact I often come home to a stranger in my kitchen. Again, I usually get a ‘welcome back, Michael.’ Nope, at this point I don’t know how to create that space I can truly call my own. Especially as my body doesn’t work, heck I can’t even call my most intimate of spaces my own.
It could be worse though, I’m in this mini nursing home thing, a friend of mine (in a similar health predicament) deal with this same shit in his very own home. He is also in 24-hour care, and he never knows who’s going to turn up. He’s always teaching new people his routine. Blimey, now where’s the order in that – when I assume that’s all he wants.
Yep people, whether they be strangers or not, are always there. Privacy comes last, the job first. And look, with regards to care, I am very very lucky, however, with regards to human freedom, I am not.
This is the life of a quadriplegic.
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