“What do you do?”

My least favourite question right now is “What do you do?” and it’s variations.  I’m sure many (if not all) unemployed people feel varying degrees of hatred for that phrase.  Obviously there must be something wrong with you and the feeling of unworthiness washes over, not helped by the unintentional judgement that comes from the questioner.  Meaning to or not, the very question itself is the embodiment of societal convention.  “One must perform an activity that contributes to society’s big picture – unless you are not a part of that big picture (possible reasons being you are undesirable because of class, ethnicity, disability, or just bad luck, but the big picture will interpret this as laziness and just being ‘wrong’).”  Also, depending on the individual questioner, there is the implication of “Go on, impress me.”

Being as I am both disabled, and me, those around me have opinions of my unemployment on the spectrum between ‘Well, she is disabled,’ to ‘You have potential, stop being lazy.’  I don’t know what gets to me more because they both make a point, whilst ignoring a big point.  Yes I’m disabled, but I still am a person who wants to enjoy and contribute to life as much as possible.  On the flip side my personhood is recognised but limitations (mine and society’s) are ignored.  And the result is a very mixed up, self-righteous, guilt that leads to chocolate and computer games, and voluntary seclusion to escape the feeling and the question that raises it. 


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.

I wanna be a writer

*** Real Time Event/Rant: The concept of telemarketing annoys the hell out of me.  It is the telephonic equivalent of spam emails, pop-up ads online, and the pamphlet-sales-brochure-thingies you get in the mail.  It’s unwanted trash (the legal stuff) and outright burglary (the illegal stuff like if you give me your computer/bank details ‘blah-blah-blah’).   Telemarketers (the legal ‘we want your money’ kind), if it’s the only job you can get, kudos to you, but don’t expect me to like you.  Civility I can do, hell, I can be damned polite.  But I’m not gonna help you take my time and money.  So when I answer the phone  and someone in stilted english starts talking without identifying themselves, and asks to speak to “Bianna (correct surname)” – “Nah, doesn’t live here” is my answer. ***

I am currently unemployed and disabled.  This has been my status for  over a decade, with the additional descriptor ‘student’ in use for the majority of that decade.  Two Bachelor Degrees, and a great love and “talent” for words since I could use them, are my tools, my resume if you will.  And as such everyone in my life as suggested I combine these aspects of my life.  “You should write, you have the time/what else can you do?”, “You should write about living with a disability/friedreich’s ataxia/your autobiography”, “You should write fiction, fantasy or sci-fi (my favourite genres) about a disabled character”, and “You should write about your travelling experiences with your disability.”  Yeah, I can spot the common theme there too *smirk*.  But writing any of that is still writing, so let’s work on building my writing muscle.  I’ll pick options 2 and 4, – .  I feel like I should add Bob or Larry there, but as I don’t watch game shows, I don’t know a host’s name to add.

Now I’ve read a few blog entries from people writing about traveling with a disability, and they’re very informative (particularly this site about going to Disneyland/DisneyWorld as a paraplegic http://www.disneyonwheels.com/ – different disability but lots of info on wheelchair access – had I found it before I went, it would’ve been incredibly useful to me), but some of them just feel like a report.  I want to avoid sounding like exposition with no flair, and I guess that’s why I don’t even begin the writing process, because I don’t know if I can avoid it.  But that’s a pretty dumb problem if I ignore the answer.  If I don’t know, do nothing or try.  Do nothing, or write.