Escapades and accessible bathrooms

So my past weekends have been insightful – in unfortunate ways.  People are quite selfish and ignorant when it comes to using accessible bathrooms – nothing new there.  And my ability to transfer in public loos is waning, and that may mean that I can’t go out by myself anymore, and good god that sucks.  I knew it would happen eventually – Friedreich’s ataxia is a degenerative disease after all.  I’m just not ready.  So I’m gonna practice transferring more, and happily do leg exercises at gym and try to extend my ability plateau.

My two, insightful experiences may have had something to do with the different wheelchairs I was using, but really that shouldn’t matter.  The first weekend involved my power/electric chair.  I went solo to a cake show (Yeah, yeah cakes.  What can I say – cakes can be pretty and the icing or fondant can be twisted into awesomeness.  Also I really thought they’d be more samples.)  It was held at the ‘old’ Olympic Park precinct – so quite wheelchair friendly.  So my going solo shoulda been cool and it was, till I went to the loo.  I was waiting at the occupied accessible bathroom.  After the woman inside walked out, another woman appeared from behind me, walked past me and into the bathroom.  My shouts (“OI!  GET OUT OF THERE!”) did get her to come back out, at which time she ignored the fact she had pushed in front of me, and blamed her trying to use the wrong bathroom on the signage.   After having seen the responses of people looking for the bathroom, while I was waiting, I agree to an extent.  The hall for the bathrooms is a square shaped three walls, with the accessible bathroom on the side parallel to the hallway entrance, and the male and female toilets on each of the perpendicular sides.  The male and female toilets are not immediately noticeable, and because of the sign on the accessible bathroom “male symbol-female symbol-accessibility symbol-parent room symbol” there was the assumption that the accessible bathroom was the only toilet there and was for everyone, not just the disabled and parents with children.

After I had entered the bathroom and had transferred from my wheelchair to the toilet, someone started banging on the door, even after I had yelled “Occupied”.  The banging was more like someone was trying to shoulder the door open and was a successful attempt to open the locked door.  After 3-4 shoves the door burst open onto the back of my wheelchair then swung shut, and whoever it was buggered off.  Of course there was no call button, so I couldn’t get security or anything, so I then had to endure close to ten different arseho… ahem, “intrusions of my privacy”, as people kept opening the door, trying to enter.  One woman had opened the door with such force that it got caught in the back of my wheelchair, and I had to turn the power back on to move my chair.  Not the easiest thing to do, manoeuvring the wheelchair via joystick whilst sitting opposite/perpendicular to said wheelchair.

During and because of all that, my nerves were left frazzled, resulting in my physical inability to transfer back into my wheelchair.  I was having trouble trying to balance and put my weight in the right place, whilst trying to ‘swing’ my body from point ‘a’ to point ‘b’. As there was no help button to press to get assistance, I had no choice but to wait a few minutes to calm down and try again.  At least I didn’t end up on the floor.

My other experience was less extreme.  Went to a musical with some mates in my manual chair.  I got to the bathroom and my fondness for using my right side kicked me in the arse as the railing was set up on the left, and I’ve somehow managed to always be out with my mum (and she could help if need be)  or in my powerchair when the railing is on the left.   Always, oddly lucky of me, aye?  The railing at the cake show was on the right.  But this was on the left and I couldn’t figure out how to make it work.  And the radio was really loud, distractingly so.  I wouldn’t be surprised if I next get diagnosed with some kind of audio sensitivity.  Anyway, so major disorientation.  I called my mate Jackie on the mobile and got her to come in and help.  She’s a nurse and one of my best buds, so it was the least awkward option.  She ended up witnessing my transferring – I figured it out somehow, but my feet wouldn’t stabilise once I stood.  One foot was even standing on tip-toe, totally rigid.  I had to keep both hands on the railing so Jackie had to help with my pants.  Not the kinda bonding you imagine with your bestie.

So leg exercises are in my immediate future.  And people are real jerks when it comes to public accessible bathrooms.


New Year Ultimatums and Letting Go

It’s that time again where I and every other child of Western culture decide to write a list of promises to better themselves in the coming year.  A whole lot of conformity one way or the other.  Bettering yourself depends on what society deems acceptable; then you have the whole conformity through non-conformity argument; and then, better yet there’s the conformity of not keeping your new year’s resolutions anyway … Too post-modern for you?  Try living in my head.


But, yes, in all of that, I did reveal that I do have my own resolutions for 2014.  The extremely popular promise to join a gym and become slim, taut and terrific, is one of my resolutions this year.  Become stronger and lighter this year.  If that results in my looking STaT then f’n-A; not the point, but a bonus nonetheless.  The point is to literally be stronger and lighter.  I’d like to be able to push myself in my wheelchair faster and for longer intervals.  I’d also like to be lighter for when I’ve gotta  be picked up off the ground by myself and other people.  A lighter load on my joints and skeleton would also make myself and my neurologist quite happy.  I’ve translated this as two sessions a week with a personal trainer at a ‘relatively nearby gym’ ***(OT Rant – Geez dad sh*ts me sometimes.  Can’t take a bloody joke.  He walks by to put the tele remote on the table next to me, so I lower the screen of my lap top with an exaggerated ‘don’t read my stuff’ look and a smile and he get all shitty.  Learn to take a joke.) *** This was an easy resolution to keep so far as it was organised last month and pre-paid.  Also involving a trainer is quite motivational. And it’s all cheaper than seeing a physiotherapist twice a week.

So Resolution 1 – Be Stronger and Lighter.    

The other that has been plaguing me for a few years now is a mixture between being bored and being resentful of my friends.  Basically some of my friends aren’t cool with taking me and my manual chair in the car anymore.  That’s their right and everything, and I’d be cool with it except they’re not honest about it.   I  go away for a few months and suddenly there’s too much rubbish in the car (not once, not twice, but for two months), eventually followed by the idea that my chair doesn’t fit in the boot.  The same chair that’d had no problems for 3 years.  They now have a new car with an extremely small boot.  The part two on this is what gets at me.  I have to get a taxi to meet them anywhere because they won’t catch a bus, train, or share a taxi with me.  It gets rather expensive for me – thus the resent.  The boredom is partly the result of refusing to catch a taxi for 1 hour at a time, or to not really wanna spend more than $60 for a taxi ride.  So I get left behind because the beach is a long, costly taxi ride away.  But this year I’ve decided to stop missing out and (at least sometimes) go ahead with the price.  And working in addition to the first resolution, I hope to get out more, and to get out farther by my self.

So, Resolution 2 – Get out there

My second resolution works on two levels.  Geographically, but I’m also working on the social aspect.  Obviously I’ve gotta get over the resenting thing, as that’s not good in any way for anyone. But I also think I’ve gotta open up my social circle.  Step one – join a club.  Which is not as straightforward as it seems, but I’ve found two bookclubs that are nearby AND wheelchair accessible.  Now to read the books.

So two resolutions that I both need and want to keep.  And one more that I promise every year and never do – but this year I’m working hard on the other two, so here’s hoping …

1. Be Stronger and Lighter

2. Get out there

3. Write more 


People don’t seem to value a phonecall.  It doesn’t have to be the best conversation of your life, or even that long.  Really, everyone has the time and energy just to say ‘Hi.’  Being too busy or too tired is a load of crap.  You wait too long and someone gets hurt, whether it be you or someone you care about.  Everyone misses out.  They move on.  They drift apart.  Those memes and words of wisdom that keep touting that you can not be in contact with someone for a long time and then pick up like nothing’s happened, and that proves how close you are – that’s BULLSHIT.  A great big pile of crap designed to make people feel better about being self-centerd and voluntarily cut-off from family and friends in a world where communication is theoretically the easiest it has ever been.

Unreturned voicemails give the impression you don’t care.  One or two go unresponded, maybe three – you forgot because you were at work and it got really hectic.  Any more and intentionally or not you’ve given the ‘hint’ that you just don’t care or your interest for that person has weaned.  Over a year of no calling or physical contact or cards or letters, and regret forms.  You shouldn’t be wishing you had more time – you should be wishing you weren’t such an arsehole.