Joanna Gaga?

Thanks to Joanna for her latest post:

No not me. Sydney. Lady Gaga came to town. She came, kids screamed. Otherwise serious “news magazine” tv hosts swooned. And GaGa (whose name is apparently Stefani Joanne) sat in a wheelchair during one of her performances.

The fact that it was in Sydney’s Town Hall is an irony that doesn’t escape me (for those that know me offline.
I am not fan. I had figured that I wouldn’t be. I had judged a book by it’s cover, and I’m ready to admit I was wrong. I assumed that given her fan base of tweeny boppers (“little monsters”) and those prepared to dress in obscure costume I would find the music too harsh, among other adjectives.

I didn’t see the nightclub or town hall performances. I didn’t see the wheelchair stunt as some are calling it. But I did see her tv interview here and her performance after the interview in the glass box. I have an admission. I liked it. Based on those two events I like her. The fact that she went on to roll out on stage doesn’t (having heard her speak) change my view.

She is remarkably level headed and passionate about inclusion. I understand from the Huffington Post piece that she has offended some of her fans and overseas disability groups, but less so here. Here as long as it was done consciously it has been received ok.

I was asked 5 times yesterday how I felt. That’s my answer. Like others I was more just jealous that she could get a chair that worked for her purposes so quickly especially after my recent experiences!

Carl is Back! Yay!

You Should Have Solid Tyres!

Well, I'm back! Totally rested and alive! The first semester of my marketing honours at university is finished, and now all I have to do is conduct some large-scale research and write a 20,000 word thesis. Yeah, fun times!

I really shouldn't complain though, university is voluntary - self-inflicted pain, if you like. There was however an incident that happened to me a few weeks ago that was entirely involuntary, something that caused much more than a slight inconvenience.

My brother Rory was staying over ‘looking after me’ as my parents were away. And when I say he was ‘looking after me’, all that usually involves is just ordering pizza, listening to music and drinking beer. In disability circles, when parents take a holiday it's called ‘respite’, though the connotations of that make me sound like an ogre or something. Regardless, our weekend was pretty relaxed - that was until we finally decided to brave the outdoors and actually do something.

It was a leisurely walk to the train station, picturesque even - with birds chirping away happily. Unfortunately, after arriving at the station Rory looked down and noticed a problem - a massive rivet had made its way into one of my tyres! There are situations in life where all the options apparent suck. Home was a 15 minute walk away, and in that time my tyre could have deflated completely before we would have crossed all the main roads, let alone before we arrived home. My parents were hours away, so calling them was out of the question. So what did we do? We jumped on the train and headed to the city.

I bet you are thinking it was a stupid decision, but there was method to our madness. A great organisation called Travellers Aid is situated at the heart of Flinders Street Station (there is one in Southern Cross as well), they offer a wide variety of services; including the rental of wheelchairs and scooters, charging facilities and even personal care. Our logic was to arrive at Travellers Aid and see if they could repair my tyre, or at least put us in contact with someone who could.

So we boarded the train and waited. A sinking feeling came over me, literally. My electric wheelchair started developing a pronounced lean to the right as my tyre quickly deflated. Rory started freaking out, repeatedly muttering “Aww shit...” under his breath whilst I giggled nervously. I didn't dare moving my chair, though I knew I would soon need to - it looked bad, really bad.

A fellow passenger on the train came over and informed us that we had a flat tyre situation on our hands. I suppose I should be more appreciative of their sentiment, but stating the obvious didn't help matters very much. Another passenger was even less helpful, “I thought wheelchairs have solid tyres!” she said, as she exited the train. Very funny! Thanks lady, thanks a lot.

As another wheelchair commuter entered our train carriage we asked the driver if he wouldn't mind helping us out when we arrived at our stop. He agreed, which was cool - he also asked me why I didn't have solid tyres, it wasn't funny anymore.

It was the moment of truth, we arrived at our stop and it was finally time to see if driving on the flat-as-a-pancake tyre was possible. The train driver was patient as we left the carriage, which was lucky because it certainly took a while. I'm not quite sure how to explain the feeling, and the noise. Every rotation of the tyre produced a sickening rubbery squeak, and as my top speed was cut so dramatically, the arduous journey to Travellers Aid took at least 15 minutes, when it would normally take just one. The journey wasn't made any faster by the train attendant with ill informed but good intentions.

To be honest, we didn't really need anyone to accompany us. We knew where Travellers Aid was because I had been there countless times. But people often like doing their good deed for the day, even if it is not really needed - so we let the attendant tag along. Bad move.

I swear it; the same comment spewed from his mouth almost every metre we travelled – “Wow! I thought wheelchairs would have solid tyres!” He was driving me insane! “Can't you get solid tyres for them? You should have had them fitted.” I had a finite amount of smiles left at this stage of the journey, and as we finally reached Travellers Aid and ‘thanked’ the attendant for annoying the absolute shit out of us, he left with these parting words – “Hopefully you get it repaired soon, but I recommend getting solid tyres!”

I didn't want to drive on the flat tyre for a second longer, for fear of damaging the wheel itself. As such, it was a welcome relief when we entered Travellers Aid. There was no stating the obvious, and the lack of snide remarks and queries regarding solid tyres was very refreshing. Unfortunately though, there wasn't really a solution to my pretty obvious problem either. They didn't have the tools to provide a full repair service, but they did have the option of wheelchair rental.

We decided to take a break from the ordeal and get some lunch. After all, it was why we headed to the city in the first place. I felt strange being in a manual wheelchair again after what must have been at least 10 years; it reminded me of the good old days. Especially because it was my older brother pushing me around, although in this instance he is no longer a kid and instead has a lustrous beard. What did carryover from childhood to adulthood however, was an aggressive streak in his wheelchair pushing.

It is no stretch to say I'm a bit of a control freak, so when my very mobility was taken away from me and put into the hands of a madman (Rory), things sure became stressful. The heart of Melbourne city is a pretty busy place, with frantic pedestrians darting around at obtuse angles whilst simultaneously chatting on their phones, taking photos in front of landmarks, or listening to their iPods. There were countless close shaves, a couple of clipped ankles and one or two dented shins. Every collision resulted in me receiving a dirty look, but all I could do was hold my hands up and plead innocence- after all, I wasn't in control.

Nevertheless, we arrived at one of our favourite cafes safely, and found a great position out the front near an outdoor heater. This isn't a food blog, thank God - there is no shortage of them on the Internet! What I will say however, is that I am a coffee connoisseur (wanker) and I enjoy quality food - the cafe we frequent passes with flying colours.

What didn''t pass however, was the comfort of my manual wheelchair seat. It makes sense though, because my scoliosis has made my back uniquely proportioned (buggered), it juts out like the hunchback of Notre Dame. With that said, I suppose it makes sense that I normally require a fitted seat to be comfortable. Still, regardless of the quality of the food and coffee, squirming around in a seat certainly detracted from the fine dining experience somewhat.

It was at this point when we decided to ring up an insurance company. The people at Travellers Aid told us that they may be able to offer wheelchair repair services. The phone call appeared to be promising at first, as they indeed had roadside assistance for wheelchairs and scooters. It was going to cost us money, but nothing in life ever comes for free, and that's certainly the case with disability related dramas.

It was organised, or so we thought. There was a problem though, the repair car would only meet us parallel to a road. You may be thinking that it sounds fair enough, and normally I would agree - but they were adamant that they could only repair my electric wheelchair on the roadside. No, we could not meet them at the car and show them to my electric wheelchair - that was far too logical for an insurance company. You never know, we could be a threat to them! Everyone knows that when grown men or women leave a car to repair a wheelchair it poses a serious threat to their health and safety! I'm not sure, you'd think those working for an insurance company would have a pretty decent insurance policy, but I digress...

Rory tried to reason with them, and tried to use logic. We asked; what if I was alone and my electric wheelchair had run out of batteries? How would I meet them at the roadside? I suppose I should have realised that logic and insurance companies are not often synonymous with each other. I thought it was pretty simple though; I didn't want to risk driving my chair on a flat tyre and damaging my metal wheel, whilst trying to find the repair people on a crowded street, people who are stupidly legally obliged to stay inside their warm and cosy car.

My electric wheelchair was at the largest train station in Melbourne and in an easily identifiable location. If they wanted our longitudel and latitude, or our GPS coordinates, we would have most likely been able to provide them. But no, they couldn't leave their car.

Bullshit.

So what did we do? We cancelled the policy, and told them that it was rubbish. The whole phone conversation taught us a lesson though, the next time your wheelchair breaks down, make sure you have the foresight to ensure that it breaks down parallel to a road.

Our only option now was to wait for the parents to arrive, and bring with them a new tyre. Luckily they were headed back to Melbourne anyway, but they were still a few hours away - A few arduous hours sitting in an uncomfortable manual wheelchair.

Nothing very noteworthy happened, we cruised the streets aimlessly as night began to fall. We observed the weird and wonderful inhabitants of Melbourne; the homeless and the higher-ups, the teenagers and the tourists. It was getting desperate and cold – so beer was consumed to warm our weary hearts. Rory and I almost resorted to drinking in an alley, but we didn't feel quite that homeless - commonsense prevailed as our parents finally arrived two hours after the insurance debacle.

The story from here on is simple (and a bit boring), it literally took five minutes for my dad to replace my tyre. Better still, we didn't need to meet him at the car! Then we drove home. Exciting!

We kept the offending rivet for posterity, and my dad even scanned it for me. Here it is, in all its magnified glory:

So, that's about a wrap. All we wanted to do was head to the city, grab a coffee and maybe get some lunch. But as always, the most memorable times are those that are not planned.

But what if I was by myself when it all happened? What if I was nowhere near Travellers Aid? Then what would I do? Maybe I would decompose, leaving just a skeleton as the repair men in the insurance car would wait in comfort? Flat tyres don't happen very often, and for that I am thankful. But there really are no options in the case of emergency, so what could I do? 

Maybe I should get solid tyres?

five 2.0

Thanks to Joanna for this post!

Ok so a few days ago I promised that I’d give you my top five things I want to be different for people with disability in 5 years time. There are of course more than 5, but here’s my five.

• I want the assumption that I (or anyone) needs a carer with them to stop. I may or may not have a carer, but it is amazing how may people especially from non-disability focused organisations (like airlines, it seems) assume that I must. If I don’t have a carer with me at the point where you see me, and you don’t know me, then lets assume for argument’s sake that I don’t have one or need one. In fact if I look like I know what I’m doing with a particular situation, lets treat me like I do. It’s quite hurtful as a grown woman who has lived with this level of difference my entire life, to have complete strangers look around me for someone, anyone that stands up so that they can breathe a sigh of relief, start talking over my head, and  tell me how lucky I am to have a friend like whoever the standing person is. I’m not taking anything away from those that have either formal or informal carer arrangements, but I don’t. I’m trying to get a best fit here in a world that i at best 90% there in some areas (but it’s often a crucial piece that is missing).
• I want to really be a person, not a product/program or a problem. With the integration of some provision of accommodation of people with disability in the mainstream activities of life, I’ve noticed an increase in bad references. Variations on”There’s a wheelchair coming to 16″, said  to me is a twice or even three times daily reference. I know its shorthand and  know its said so you can ultimately help, but its rude to ignore the person in these references. My chair didn’t ask for help. I did. There may well be processes that need to be incorporated, but that’s not going to change if you add a personal descriptor into the mix. My wheelchair is not going to drive itself. While I’m here, would it hurt you to realise that I didn’t appear on your radar as a problem as much as a person trying to get on with it in a world that wasn’t built with weakness in mind? Smile.
• Borrowing from Stella:

In five years time I want to be living in a world where disability doesn’t automatically mean disadvantage. I want to be living in a world where I don’t spend every spare cent of my salary, from a job I work hard at, on maintaining my participation in the world. I’d like to be able to entertain the possibility of being a home owner or going overseas, like my non-disabled peers.

These things are do-able but really a lot harder than they need to be.

• I want it to really truly be illegal to build a building, or run a business that does not provide access to all of us, and I want that enforced legally and socially. I want it to get more than sympathetic/guilty glances when others can use a service like transport without thinking twice
• I want to be a proud included member of any number of communities and cultures — not just based on lack.

There’s a start…. Thoughts?