33, The Year That Was

Tomorrow, the sixteenth of December 2018 is my thirty-fourth birthday and unlike most adults I know, I am really looking forward to it.

Being the constant self-evaluator that I am, I find myself in a reflective mood. I feel the need to look back on the past year, see what I have learned and set some goals for the year ahead, (most of which I know I will not keep).

This year, I gained a Sister. No, Mum and Dad have not had another baby , my brother finally put a ring on it and he and Amy got married. Do not ask me how the wedding was though because I could not tell you. For the first and to date only time ever, my Cochlear Implant and my Hearing Aid both died at the exact same (and most inconvenient) time, so although I was there, I missed everything. Having hearing loss is definitely worse than impaired vision.

The worst thing is, i look terrible when I cry…Like way worse than normal.

Once I realized I would not be able to communicate, hear the speeches or participate at all, naturally I burst into tears. at that exact time the photographer chose to take one of the only photographs of me from the day. It is not pretty.

Damion and I went on our first holiday together. We had a whirlwind visit to Melbourne, where somehow I found myself at the Melbourne Cricket Ground watching  what would turn out to be a Grand Final prebiew, between the West Coast Eagles and The Collingwood Magpies. Damion is still trying to convert me to the dark side (AKA WCE) but I am sticking with my Fremantle Dockers thank you very much!

To Be Honest, I was a bit apprehensive about this trip because I was not sure how we would be, not being able to escape each other for four entire days. Turns out, despite the various bouts of taxi drama and getting lost constantly, it was the most relaxing holiday I have ever been on.

A good thing too, as not long after arriving home, we found out that Damion has Melenoma on his lung, meaning he would need to start chemo in ernest. Up until then, I had been managing my depression/anxiety quite well. But this tipped me over the edge (not literally though thank goodness). Obviously, I was devastated by the prospect of loosing Damion, but with added bonus guilt about (again) making it all about me. I decided to tackle it head on and have been seeing my psychologist again regularly. It has really helped, as has the constant support from our friends and family. Not to mention my trusty meds.

I am a person who talks a lot. But, not really about my feelings or anything that might make me feel or appear vulnerable. With all this going on, I had to break this rule. Talking actually does help sort things out and put things in perspective. It does depend on who you choose to confide in though.

Damion has taken it all in his stride and as always, has been a pillar of strength for us all.

For the record, he has just had his three-month review and his cancer (which was covering both of his lungs), is already 60 per cent gone. It seems there is a God afterall.

On a side note. It is official, this one is a keeper!

This year I also tried indoor skydiving and frankly, I will not be doing it again, it scared the shit out of me. Jumping out of a plane at 14,000 feet is way better. It also has the added bonus of giving you a bit more privacy in which to panic. I got a notification this week that the Urban Descent registrations open soon. I am very seriously considering signing up, in the hope I will get to Zipline the 160 metres down the QV1 building in the Perth CBD. I have abseiled it twice before but I would love to compare the two experiences.

I have recently become involved in various initiatives to promote disabled people in the workforce, educate people on the benefits of employing us, and how to go about it. I absolutely love doing this. It is, at last a real opportunity to make an actual difference as opposed to just talking about making one.

Turns out, job searching is far more difficult than I thought. Especially when you are disabled. Makes me super grateful for the more than fourteen years (and counting) I have had where I am. Speaking of which, it sounds like I am sucking up (I am not. I do not think they read my blog), but the team I work with is amazing. They go above and beyond to ensure I can fully participate/meaningfully contribute to everything, and they do it without alterior motives. This is very rare, both in and out of the workforce.

It has guilted me into realising that I seriously need to do something about my daffiness and my lack of spacial/environmental awareness. Improving this is resolution number one for the new year.

As far as writing/blogging goes, this year has been a good one. I have been published by a few new publications (including MANAMIA, which I have been trying to get into for ages). I have had a couple of invitations from publications to submit work, which I am still working on and one of my rants is due to feature in an upcoming edition of The Big Issue Australia. I still have no idea why people want to read my waffle, but I will take it while I can get it.

Like sands through the hourglass, so was the year in my life.

XOXO

Advertisements

My Book Pitch

I am due to become an aunty soon, and upon hearing the news, I started to reflect on what it is that I want to be able to teach my new niece or nephew. After thinking about it long and hard, I have come up with absolutely nothing.

There is the old chestnut, “you can be/do anything you dream of,” but that’s been done, and let’s be honest, most children already think that anyway.

If you ask an average kid what they want to be when they grow up, chances are they’ll tell you they want to be a firefighter, an astronaut and a wizard all at once. In fact, I posed this very question to a 3 year-old I know recently and he told me he wanted to be a dinosaur. Children see nothing as impossible.

As a small child I thought this too. I expected I could climb mountains. Not literally of course, but as a littlie the prospect of climbing a set of stairs seemed almost the same.

 

However, as a disabled child, I found this to be impossible. Not because it was, but because I was never allowed to attempt it by myself. So, I “learned” that this, and many tasks like it were simply not something I could do. Until blissful adulthood, when as master of my own destiny, I gave it a go and surprised myself.

Granted, there are indeed things I can’t do, and I found that out the hard way. But I survived the attempts (albeit with a few bumps and bruises in some cases), and now I know. This means I have more scope to make decisions on how to tackle other things. It is empowering.

I guess the conclusion I have come to then, is that its not the new baby who I need to impart my wisdom on. It’s their parents.

Along with about 99% of the population (I’m assuming) I have a long-held desire to write a book. The problem is, that takes time that I just don’t have. Plus, I am only an expert on myself (which isn’t very interesting), and I don’t have enough expertise on anything else (or the motivation to get some), to be able to write a book about it. Except for Harry Potter that is. But I think JK Rowling has already got that covered.

I do have an idea for a children’s book though.

Its about Molly. She’s not like the other helicopters who live on the airfield. In fact, She’s a clever forklift (who picks things up easily). Molly has a best friend, Freddie the go-cart, who dreams of being a muscle car when he grows up.

Molly’s parents, Mister and Missus Coddled (a pair of middle-aged helicopters) love their daughter very much and recognise her superior intellect, but despite this they can’t seem to be able to let her experience life for herself.

Now, fiction and writing for children is usually not my forte (some might say it still isn’t). So, I have no idea what my characters should do, or how to make them do it.

Although, there was this one time when my brother and I were playing “too near” to a pond and the adult who was supervising us spent so much energy reminding us to be careful and shielding us from the possibility of falling in. That they weren’t watching where they were walking and fell in themselves. Would that work?

I am hoping that my book, which I envisage as a picture book, (even though I’m blind and can’t draw) becomes a regular fixture in the bedtime rotation of children across the country, (I have no ambition for world domination). That way, parents, like my brother might pick up on a few hints. You are welcome little ones.

So, who wants to publish me?

XOXO

I’m a terrible bedside spectator!

It is interesting when you get to experience a situation from the other side of the fence. It is shocking when you discover that you were better off where you were.

Recently (and for the very first time), I spent a whole week (give or take) in hospital. Not as a patient, but as the supportive loved one.

That gig is bloody hard. Much harder than being the patient!

It did however teach me a few things.  Apparently, I can run after all.

When I got a text, telling me Damion was in hospital and it could be “serious”, I fled from the office at a speed that even surprised me. You would have thought I was off to save him from a fire, and not just, because the sheer effort left me sweating like mad.

It was all completely pointless of course, once I finished running I still had to wait 10 minutes for a taxi.

I have made the hurried journey to hospital many times. More times than I would like to recall. However, usually, those excursions were for me.

I knew exactly what to do then; make lots of noise, be in pain and occasionally vomit, bleed, or, you get the idea.

Once there, I knew my role was to submit to poking and prodding and answer the same set of questions repeatedly.

But what was my role as a bedside spectator? I had no idea.

I was so confused that more than once I had to stop myself from offering the nurse my arm when she came to do Damion’s hourly obs. I wish I were joking.

As it turns out, I suck at being the brave one when I am not the patient and that surprised me. I always imagined that I would be like the wives in old movies who calmly hold their lovers hand or mopped their sweaty forehead while gazing down at them reassuringly.

Nope, I totally lost the plot.

This should not be a surprise. Once, as I got into the lift of my apartment building, I got the fright of my life when I saw someone passed out on the floor. I could not think what to do, so I called Dad screaming at him to come quickly but not telling him why. Luckily, the lack of immediate treatment did not harm the person at all. Only because they turned out to be a mop and bucket that had fallen over not a human being.

Some of this mistake can be explained by my vision impairment, but clearly, I am not good in a crisis.

The whole ordeal (which still has a way to go) has left me feeling useless. I always knew that is something happened to Damion (or anyone really), there would be little help that I could offer physically. However, the most annoying thing is that I am no good for emotional support either without the help of a sedative.

I have not had this feeling for quite some time, but as a person who needs to be needed. I thrive on having a purpose. Right now, I feel like a fifth wheel, and a wonky one at that.

Good news is, I still know how to make it all about me, so that is something.

XOXO

The disabled kid in the normal school

As I am sure you can tell by looking at me , I am disabled, and as I hope you can guess from my writing, I have been to school.

In fact, I did 12 years of school. A mainstream school with “normal” kids. I would like to say I then went on to become a doctor but that would be a lie. I work in Marketing.

My point is, that I survived, my school chums survived and I was even able to do something useful with myself afterward. Furthermore, my presence in classes did not stop anyone from reaching their potential.

By modern standards, I made it through virtually unscathed.

I encountered very few bullies, and those I did encounter bullied me because they are a tool. Not because I am disabled.

As far as I know. There was never any question of me not going to the schools I went to because both (Primary and Secondary) were local and co-educational so it meant that my brother and I could be together. My disability was not really ever a factor.

I think there was a push by one particular individual for me to apply to a “disabled friendly” high school when the time came, but I was not having it. Pretty much my whole class was going to the same place So Iwas too.

AS far as teaching me went, I did everything the rest of the class did. With the possible exception of Physical Education, where modifications were made to tasks so I could participate. For example, I would have a runner when playing cricket, an easy job as I very rarely hit the ball. I also have a vague memory of being given a ribbon to twirl while everyone else did gymnastics.

If I was lucky, I was allowed to sit out or go to the library. An option many of my school chums also wish they had.

Apart from that one teacher referred to above (who was a firm believer that I was a lost cause purely because I am disabled) there were never any issues that were out of the ordinary.

In terms of making friends and participating, in primary school I made friends and lost them as much as any child does and I was always happy to be front and centre during assemblies. In high school, I was in the choir and performed with it at every school concert or function. I am still very close to quite a few of my former classmates.

I do not regret going to a “normal” school, as I believe because of it, I am able to interact with Non-disabled people without feeling intimidated or inferior. However, there was a time that I was (for want of a better term) scared of people who are disabled, and I think this is due to my lack of exposure to anyone (apart from myself) with a disability.

I did at times also feel ashamed about having a disability. Indeed, I was completely in denial of actually having one for ages. I viewed any allowances or modifications being made for me as offensive and I think this is because it made me feel singled out.

I often wonder whether I would be more independent now if I did go to a “special” school. I know a few people who did, and they seem so much more together than I do. Did they learn life skills or coping mechanisms that I did not?

This would have been particularly helpful in high school, where at times I struggled to walk the distance from class to class.

I was never reprimanded if I was late, but often I would feel so much pressure to be on time that I would skip breaks and sit outside my next class so I did not have to walk in after everyone else.

The only other negative effect I can identify from being the “disabled kid” in the “normal school was that I was often able to use it as a security blanket. I never reached my full potential academically as I never really worked as hard as I should have.

I think this is what those against inclusive education say happens to the “normal” kids when students like me are around. How ironic.

I decided early on that I would not try for TEE (exams needed for university) because I was sure no one would blame me, and because I was sure that if I failed it would be what people expected to happen.

I regret that now. But it does go to show that year 12 results are not the be all and end all.

So many people have weighed in on this debate lately and honestly, I can see arguments for and against.

It should also be noted that all my schooling took place in the private sector.

I turned out ok. But remember, different strokes for different folks.

XOXO

A crumby thing happened on the way to The Project: The post script

Previously on Inner Musings of a Funny Looking Kid…

I wrote of a run-in I had with a taxi driver in Melbourne, who refused me entry into his cab (for full details see “A crumby thing happened on the way to The Project”).

I do not really like to make formal complaints (I prefer to whinge about my issues on my blog) because, regardless of what the circumstances I always feel bad about possibly getting someone into trouble. In addition, the attention I get from whinging is usually enough to placate me.

As usual I considered letting it slip, “what if I miss-understood him?” I thought to myself. Was it that big of a deal?

Apparently it was. This blog has been the most interacted-with blog I have ever done. For whatever reason it struck a chord with so many.

So, I went to the website and made a complaint, giving all the detail I had, but not expecting much (as I did not have his number), and feeling very guilty.

After three weeks, I had started to lose hope of ever hearing back, and as the dust had settled by now, I was a bit relieved. But eventually they did get back to me.

As it turnsout, this is a very serious issue which they take very seriously. The driver has broken the company’s code of conduct and (I think) the law. Yet another lesson not to doubt myself.

The driver in question has been appropriately dealt with and I have been promised compensation, funded by a fine he will have to pay.

Despite my dislike of getting people into trouble, I did get a little giggle from this. Is that bad?

Let this be a lesson to him, and to me.

XOXO

Musings of Melbourne

 

Damion and I have just returned from our first-ever holiday together, a weekend away in Melbourne Victoria.

I am not sure how Melbournians do it, living in that cold. I froze my arse off. Ironic, given how much I ate.

“They” are not wrong when they say there is good food to be eaten in Melbourne.

My favourite meal to go out for is breakfast and knowing this, I was told that whilst in Melbourne I had to try a meal of smashed avocado and feta. Apparently, it is what all the trendy people eat for brekky there. I did so, and I have to say I cannot see why it is so exciting.

On the subject of trendy dining, is it normal to have to eat your $35 meal on your lap?

For our last supper, we went to a very cute, very old Irish pub. The place smelt of wooden furniture and had a roaring open fire (always a highlight for me). Our “table” was knee high and nestled within a booth that made me think of my Catholic school days and giving confession. When our enormous plates arrived with servings to match, we had to pull them up on our laps to eat. This meant I wore a lot of it, but it was the yummiest Moroccan Lamb Salad I have ever had. Even Damion had nothing but praise for his rack of lamb. My only criticism (if it is one), is that due to the huge serving of salad, I could not finish eating the chips (French fries) I really did not need, but had to have anyway. This was tragic, as they were amazing!

For the record, I consider myself to be something of a hot chip connoisseur. They are quite often the only thing I can eat on a menu, so I have them everywhere. I am thinking of starting a blog just reviewing hot chips…

I am not a big pub person, although in Melbourne I made an exception. They are different to the ones in Perth. Full of character and quiet enough to have a conversation. Even when they are full. I also settled on my drink of choice in Melbourne. Raspberry Vodka and lemonade. I took great delight in ordering “the usual” everywhere we went.

For a modern city, Melbourne has a lot of horses pulling carts (for the tourists I assume). Although there are plenty of cars about, the carts and the constant “ding ding” of the trams made me feel as though I had stepped back in time. Until I got on an actual tram, that is.

I was expecting to see Judy Garland gleefully singing about how jolly it is to ride on the trolley. That is not what I found. Instead, there were bored looking commuters, carrying their shopping and trying not to catch each other’s eye. Shame not all the trams are wheelchair accessible.

St Kilda is my favourite spot in Melbourne. Mostly because it was warmer there than in the CBD, but also because St Kilda beach is amongst the nicest I have seen. So easy to get around and really wheelchair accessible. We originally only went there to see “the clown “ at Luna Park but we ended up spending hours eating and drinking while overlooking the beach. Bliss!

I still have not seen the famed “beach boxes” though, which is disappointing.

Of course, we had to watch an Australian Football League game while in Melbourne, seeing as how it is the home of football.

They are not my team, but we went to the Melbourne Cricket Ground (AKA the MCG or the Holy Grail) to see Damion’s beloved West Coast Eagles play the Collingwood Magpies. To my surprise, there were many Eagles supporters there. Even more surprising was the amount of people sporting merchandise of my team, the Fremantle Dockers. Many of them were wearing Collingwood jumpers and Dockers hats which was odd.

That day, West Coast beat the “Pies” at the MCG for the first time. I was unsure how the very passionate Collingwood supporters would react to us, given that Damion was now wearing an Eagles shirt that he bought at the ground. I need not have worried though as everyone (Pies and Eagles supporters alike) joined in on celebrating what was a very good game. This too was unlike anything I had experienced at the footy in Perth.

On a side note: Is there anyone in Melbourne who isn’t obsessed with the football? People seemed to want to stop and chat about it everywhere we went. What do people talk about in the off-season?

I hardly did any shopping whilst in Melbourne, but Damion (who loves to shop) did convince me to buy a Harvard Alumni jumper. I wore it on our journey back to Perth and, while at the airport, I kept trying to catch people’s eye, hoping they would ask me what I had studied. No one did. Oh well.

But then, Damion had a West Coast Eagles shirt on and no-one asked him if he was a player.

Thanks Melbourne. Until we meet again…

XOXO

A crumby thing happened on the way to The Project

I thought I was used to discrimination. It often seems as though I go about wearing an invisibility cloak, which is ironic considering the amount of people who stare at me. But never have I been so blatantly discriminated against as I was on my journey to the Channel Ten studios in Melbourne to watch The Project.

I was super excited about this and thrilled to have scored free tickets to be in the studio audience on the weekend we just happened to be in Melbourne.

We had been asked to get to the studio on Chapel Street in South Yarra by 5:30 PM to allow us time to check in and be seated before the live broadcast began at 6:30.

By 4:30 PM we, (myself, Damion and my collapsible wheelchair) were waiting outside our hotel for the taxi that the hotel receptionist kindly called for us.

About 20 minutes later, a taxi in the form of a station wagon finally pulled up.

As we approach the vehicle and made to get in, the taxi driver wound down his window and with a look of disgust in my direction said to Damion, “I’m not taking her she’s in a wheelchair!”

Now, we were both prepared to give him the benefit of the doubt. Perhaps he thought the wheelchair would not be able to fold down, and that we were planning to somehow squeeze in anyway.

However, when we explained that the chair was collapsible and could fit easily into the boot of his car, he continued to refuse me entry.

Still only addressing Damion but looking at me with absolute incredulity through the passenger side window, he told us that we would have to ring the taxi company again and asked for a wheelchair accessible vehicle. Even though I was perfectly capable of getting into the taxi that was already there.

We tried pleading with him. Explaining that we had an appointment that we simply couldn’t miss. At this he seemed to reconsider, asking (very rudely I might add) “well, where are you going?”

We gave him the address, which as we were currently in the centre of the city and it was peak hour, meant that the fare ended up being more than $40. This however must not have been tempting enough though. He simply said, “nope, you’ll have to call the taxi company.” Then, he wound up the window and drove away.

I totally get that A taxi driver has the right to refuse to take a passenger if they feel that the passenger in question could be a threat to them or their vehicle.

I was neither of those things. I had absolutely no intention of causing trouble, especially as I had on my favourite skirt and causing trouble would risk it getting dirty. He just didn’t want to take me because of my disability.

Not happy Jan!!!!

Following a call from a very I rate Damion to the dispatcher, we eventually did get a taxi.

Ironically, it too was a station wagon. But, it did not have an oaf for a driver.

We made it in the end. We were half an hour late, but we did make it in time for the broadcast. Phew.

Sadly, in all the fuss we were unable to get the taxi drivers number. However, I still plan to make a complaint.

Is it any wonder that Uber is so popular?

XOXO