Leader of the six pack

Fashionistas, back me up here. There are few things worse than spending ages putting together the perfect outfit for an event, only to discover that someone is wearing the exact same thing as you. Am I right? That very thing happened to me recently. Not  once, but five times on the same day, at the same event.

I am in love with a Kiwi (a human by the way, not the fruit or the bird), and when a New Zealander is your boyfriend, Rugby becomes a HUGE part of your life. This is how I came to be at the Perth leg of the 2024 HSBC World Rugby Sevens Series.

For those of you who don’t know, Rugby has two versions, Union and League, (and yes, I do know the difference). Then there is a ’spin-off’ version of union, which is played with seven players a side instead of the usual 15 and has a much shorter playing time. This type is what you’d see in the Olympics, and what is played  in the aforementioned tournament, which runs over three days.

To add to the fun, Simon (my boyfriend) had suggested that we go in costume. As he had done when he went to the tournament in Wellington New Zealand, where it was somewhat of the fashion.

I had my reservations, it’s summer in Perth in January (the event ran over the Australia Day long weekend), and  I didn’t want to melt. Plus, I attract stares, and aspersions are made on my cognitive abilities   in normal daywear. Did I really want to draw extra attention to myself? Further, I know the people of Perth are heavily into sport, but would they really dress up  for the event? What if I was the only one!

On the first day of the tournament, I went out onto my balcony, which looks out onto the stadium, (it sounds way cooler than it is). I could not see one single person wearing a costume. so needless to say, I was not going to wear one either! However, once we got inside and the day progressed, some truly astonishing beings appeared. There were Fairies, Rubber Duckies, Spider-Men, Darth Vader , Luke Skywalker, Storm Troopers, Witches, a Dinosaur, Friar Tuck, Julius Caesar, and oddly, three men dressed as Richie Benaud, who may or may not have stumbled into the wrong competition. The Sevens is a giant party, and many punters were  pretty Mary by this stage.

Not to be outdone, on the second day I went with my costume. I was dressed as a non- descript beer can, closely resembling Victoria Bitters, (that would make a fantastic drag name, by the way).  I was sat in my collapsible wheelchair, so I probably just looked like a can someone had tried to crush with one hand, actually.

During Covid, when we were all wearing masks everywhere we went, I read of  how many people with disability and/or facial differences were more confident in public, and how they found they were treated differently than in non-pandemic times.

In my costume, I was  like a woman possessed. I danced like nobody was watching, and I sang my little heart out, as the DJ spun his tunes. Much to Simon’s chagrin.

What was that about not drawing attention to myself?

 Strangely, people were acting differently towards me, too. Random people chatting with me , instead of  talking solely to Simon. I even made friends with the two blokes in front of us as we bonded over  how feral the 2003 Toohey’s Extra Dry commercial, AKA the ‘tongue ad’ is, as it’s tune, ‘Satisfaction’ by Benny Benassi, boomed around the stadium.

On the third day I rose again, having swapped costumes with Simon. This time, I was a non-descript beer bottle instead, and my  enthusiasm, (or rather my obnoxiousness)

had not abated. The Security Guard, who miraculously spoke to me for once, peered into my bag and asked, “didn’t you bring any drink?” This  tickled me given how I was dressed, and that Simon was dressed as a beer can, So I looked at her and said, “yep, he’s right behind me.” She didn’t find this funny. Never mind, I did!

We settled into our by now, very familiar seats and geared  up for the days play, when Simon spotted five people dressed in the same costume that I was wearing, who were  sitting a few rows in front of us. But there were only five of them , and that’s just silly. So, I made them an offer that, luckily for me, (I needed to find a situation to fit the title  I had already thought of for a blog I hadn’t written yet ), they couldn’t refuse. I told them that they needed me, to complete the ‘six pack,’ and they went along with the joke, chuckling (with me not at me), as we all posed for a photo together.

I am not usually that willing to interact with people I don’t know. Or sometimes, come to think of it, even with people I know very well. Was I getting ‘Dutch courage’ through osmosis? Or was I simply more acceptable, and thus more comfortable in a  can or bottle, rather than a wheelchair?  Either way, it was brew-tiful. Shame it can’t happen more often.

XOXO

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I am (still) ugly, hear me roar! 

One good thing about being legally blind, is that nowadays, everyone (okay, almost everyone), looks perfect to me. I can’t see the huge pimple you’re self-conscious about, the spinach in your teeth, or the overgrown nose hair desperately in need of plucking. I guess you could say I’ve been Shallow Hal’d.

This also means that whenever I gaze into a mirror (an unfortunately frequent habit of mine), I can always deduce that I look perfect too. Fear not though, there is no danger of me disappearing up my own bum. Not today, anyway. 

I am very lucky. Whenever I am in danger of committing the deadly sin of pride about my looks, there is always someone on hand to pull me back from the brink.

My last blog, ‘Relax, disabled people are dicks too!’ Had nothing to do with aesthetics or pride. However, as I promoted it on my socials with a photo, (which I only used because I decided I’d thought of a very clever pun to go with it), my appearance quickly became the focus.

Of course, it may be a sign of having “made it,” but said photo attracted a few trolls to me for the first time. And let me assure you, they were none too complimentary about my visage. One even stated that he wouldn’t even “do me” with someone else’s.” But while I admire this chap’s optimism, I am not wanting in that department at present. However, his profile lists him as single and living in country NSW, should anyone else be interested. 

I was pleasantly surprised to find that I wasn’t much bothered by these jibes though, (not for longer than it took to report and block them anyway), but I will admit to being a tad disappointed.  Belittling someone who already identifies as a Funny Looking Kid about their looks is extremely lazy. And it’s not like I haven’t heard it before. 

People think I don’t know what I look like. I assure you; I do. Given this, some people even wonder why, if I know how I look, I wouldn’t do anything to improve it.

I was given the opportunity to do that once. At the age of about eight I was sat in front of a plastic surgeon, who enumerated my many facial “deformities” directly to me, which he said were absolutely necessary to fix so I would look “normal.” Something I should want to strive for apparently, (ah, the good old medical model of disability). 

This was the catalyst for my realisation that I didn’t look like everybody else. I wasn’t naive or blind, I knew that people stared at me, but I never quite knew why. All my extremities worked perfectly normally then you see.

This was probably the only procedure that my parents gave me the choice of whether to have or not. I chose not, but back then I think it was mainly because I just didn’t want to have another general anaesthetic, painful recovery, and time in hospital. Rather than an  aversion to being prettier. I have never regretted that decision though.

This is not bravery, and embracing the moniker of Funny Looking Kid is not internalised ablism, or a political statement for attention either. My being ugly on the outside is a fact and that’s ok. Because it also makes me who I am on the inside too, (have you thrown up yet?). 

It shocks some, makes many uncomfortable, and induces pity in others (this is the worst), which is often awkward and unpleasant for me. But I won’t be deterred. 

I am still ugly, hear me roar!

XOXO

 

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`

Relax, disable people are dicks too! 

Apparently, I am intimidating. But that goes without saying, doesn’t it? I mean, I’m 4 foot 9 inches tall and 50 kilograms. So evidently, I do cut a very imposing figure. Actually, despite my hulking frame, it’s not me specifically that is intimidating this time. It’s the fact that I’m disabled (again).

Last week, I was introduced to a young person, who was terrified to talk to me, lest they say/do the wrong thing and cause offence. I found this incredibly sad, and what’s more, I totally get it.

Recently, I read an article outlining the language to avoid as a disability ally, which referenced “the M word.’ Then I listened to a podcast, wherein they mentioned the “S word.” Now perhaps I have just been extremely lucky, but I had no idea what the hell they were on about. I do now though, because I looked these mysterious words up. As a result, I Gained 2 new ablest insults to add to my repertoire. if I were that way inclined of course. 

Further, I heard somewhere that the phrase “vision/hearing impaired (which I often use), is now passe, and don’t even get me started on the Person/Identity first debate again. It’s no wonder the able-bodied folks are hesitant!

All this begs the question; is disability activism (as far as language goes anyway), counterproductive.? 

My grandma always said, “if you can’t say anything nice, don’t say anything at all.” Sadly, it seems to me that we are in an age of what I like to call “Helicopter Activism,” where we are constantly being schooled on what words and actions are out, based on an individual’s predilections. So, people are increasingly choosing the latter, in an effort to be politically correct. Either that, or they just don’t fancy speaking with me. A definite possibility, because as you’ll soon read, I too am a dick. A big one!

I’ve been disabled my whole life, so in general its fairly easy for me to tell whether an ablest interaction is malicious or simply ignorance, and I’d say this is the case for many of my fellows. Although, both can be equally wearing when I encounter them several times in one day. You may think you’re  being nice when you tell me how brave you think I am, try to help me wipe my nose wwithhout MY consent, or challenge me to a race with my walking frame or in my wheelchair, but chances are, I’ve already heard that today and I’m already fed up by it. So please, try to keep that in mind before approaching. Afterall, it’s not like your imparting vital instructions to defuse a bomb in my hearing aid or anything.

A good rule of thumb is; if you feel like doing/saying something for/to a disabled person that you wouldn’t say to an able-bodied person, don’t do it. If you really feel compelled to interact with a disabled person because, “it will make their day, (take it from me, it probably won’t though), JUST SAY HELLO!

You’ve been warned… 

 After I went blind, roughly 16 years ago, I remember a friend crumbling with shame and embarrassment for using the phrase, “I see” in response to me explaining the reasons for my sudden blindness. For the record, this is not ablism. It is perfectly reasonable to ask someone who is blind, “did you see/watch MAFS last night??” or to ask a deaf person, “have you heard from your mum lately?” as these are just regular turns of phrase. Or are they?

 

Many years ago, I dated a very suave man who was an excellent conversationalist, and very funny, although he wasn’t what you call handy. In fact, this bloke didn’t have any arms at all. I haven’t seen him in a while, but I’m pretty sure he still hasn’t got any.

Anyway, on one of our first dates my beau invited me to his place for a movie night. Somehow, it was agreed that I would bring dinner. A lasagne, which I cooked myself.

Sidenote: I’m not one for condoning bravery being attributed to disabled folks willy-nilly, but there are not too many people who would willingly eat my cooking. Just saying.

Upon reaching his place, I began slicing up the lasagne, while he went off to get plates and cutlery. Miraculously, I finished first, and with nothing left to do, I innocently asked, “would you like a hand?” Graciously, and without skipping a beat he replied, “yes thanks. I’d like to,” before bursting into laughter. It was then that my brain caught up with my mouth and I realised what I said. Oops!

For the record, our relationship did survive this little awkwardness, and we went on to date for almost a year. I don’t think I ever cooked for him again though.

See, disabled people are dicks too. Don’t be afraid of us.

XOXO

 

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“Do you think you should screen yourself out of existence? “

“Would you ever consider screening an embryo to eliminate the possibility of having a child with your condition?” 

It’s the question posed to me by someone  recently, when I  mentioned an article I had just read about a woman with my condition, Incontinenttia Pigmenti (IP), who chose to conceive via IVF so that she can select the

potential baby’s gender , primarily to avoid the high likelihood of miscarriage, should the embryo be male. Which, by the way, is a different scenario than was posed in the question.  

You see, this extremely rare condition, which mostly affects the nerves and the skin, but like a lot of other disabilities is a spectrum and can include a range of other impairments such as hearing and sight, is a fault in the X chromosome. Meaning (as I understand it), a male foetus who inherits IP cannot survive beyond pregnancy.

For me, this means that theoretically I could conceive children naturally, and if I do carry to full-term, the baby will probably be a girl. Further, she may or may not inherit IP, which could present totally differently to mine anyway. 

Interestingly though, I only know this from doing my own research. How curious.

I’ve never deliberately tried to get pregnant, nor have I ever publicly expressed a desire to be a mother. Despite this, I’m often told that I should refrain from having children, by strangers (and occasionally “friends), who base their advice solely on what they think they know about me or my life. Ironically, often, I would give the same advice to them, even though they’re usually not disabled themselves. 

Bafflingly though, no one really seems interested in knowing if I actually want kids. Despite their fascination as to whether I can have them, and the logistics of their conception. They’re just sure it’s a bad idea.  

Now, I’m usually an open book. But when it comes to genetic selection issues, tantamount to eugenics, I’m out.

Especially when the question is essentially, “do you think you should screen yourself out of existence?” 

In this day and age, would anyone dare ask this of me if I were from another minority group?    

Interestingly though, upon mentioning I’d been asked this, the disabled folks I spoke to were horrified by the question. While (more often than not), their able-bodied counterparts looked at me like, “well, would you?”  To me, this says a lot.

Thankfully, I have never felt the desire to have children in the way that other women say they do. And, although I am in a committed long-term relationship, I’ve never had the added pressure of someone asking, “when are you guys having kids?” Forced on me either, so this isn’t something I have ever given much thought to. Now that I do think about it though, I wonder how much of my decision not to have children hinges on my disability.

If I’m honest, I’d rather avoid the subject of me baring children entirely. Mainly because I usually end up feeling the need to justify my own existence in the process, usually to try and negate the possibility of hearing, “but why would you want to do that to a child?” This is of course a pointless endeavour though. If I have learnt anything in my years of blogging, writing, and public speaking, it’s that those who need the lesson are rarely enlightened enough to absorb it. Despite their insistence to the contrary. 

Why then, have I bothered to even write this at all? I hear you ask. 

For the exact same reason that I and every other woman in the world should get to choose whether to have babies, without judgement, but fully equip with the necessary tools and knowledge to make an informed choice. 

Because it’s my right.

 

XOXO

 

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In dog I trust 

Lately, my Facebook newsfeed has been full of sponsored posts from homeless animal charities, desperately seeking loving homes for a myriad of creatures. As I scroll past, (knowing full well that if I click them I will want another pet I don’t have room for),  I find myself in a very remulative mood.

 

  

I am the first born in my family. So, there are literally a million photographs chronicling my evolution from infant to teenager, scattered around the family home. 999,999 of them (give or take), feature our gorgeous Standard Poodle, Candy, somewhere in the shot. She was my personal companion and security guard. always present and ever alert for a call to action. At least until my little brother Geoffrey  arrived on the scene.

 

The year after Candy died, when I was 14, Napoleon came into my life. We adopted him from a family who were moving overseas, as company for Hercules, a fearless Toy Poodle who had also recently joined the clan. Apparently, Napoleon was also a Toy Poodle, but where ‘Herc,’ as he came to be known was hypo (he ran everywhere), compact, and elegant, Napoleon was solid, (some might say fat), bowlegged, and chilled, with big bulging eyes. He looked like a koala and bulldog hybrid, with the manner of a sloth who dabbled with marijuana. Needless to say, they were like chalk and cheese.

 

While Candy and Herc were very much family dogs, from the second he crossed our threshold, Napoleon only had eyes for me. He followed me everywhere, (even insisting on coming with me to the toilet or the shower). Wherever I was, you could bet your life that Napoleon was right at my heel. I am not a dog on the bed kind of girl either, but for Napoleon I made an exception. Not that I had a choice in the matter.

 

I tried to do the teenager thing of portraying it as no big deal, perhaps even a nuisance. But secretly I loved the devotion. Seeing through the thin veneer of nonchalance, my Mum would often say, “I hope one day you find someone as devoted to you as that dog.”

 

Napoleon and I just seemed to have a connection. At times I suspected he knew what I would do before I did, and similarly, I seemed to always know what was on his mind. It was as if we were made for each other, and perhaps we were.

 

As a physically disabled person, I find it difficult to get around at times, and when I do get some momentum going, I am still much slower than most. I do not do running, jumping, or throwing and catching. This means that I am a bore to many, especially those in the K9 community. But it was never a problem for Napoleon.

 

Unlike most small dogs I have encountered, Napoleon was not at all yappy. That was my department. 

In our many hours alone together, I would endlessly divulge all my anxieties to him. He heard about my worries regarding family, societal expectations (or lack thereof), school, my social life, and as I got older, my genuine fear that as funny-looking as I am, I would never find someone who would want me. All my friends were coupling up, and I was feeling a bit left out, you see.

 

I knew Napoleon would understand though. He was my emotional support animal, before I knew what an emotional support animal actually was. He was a free counsellor, who never judged me, and who was available around the clock. Plus, with Napoleon, my confidences were assured. 

Please do not get me wrong though. As lovely as he was, Napoleon did have his faults. That dog stank! When I said we were often alone together, that was usually because he had a habit of farting so offensively, he would clear a room. As I was not  legally blind then, I can only assume that in my case love must also have no sense of smell. Honestly, as my grandma used to say, “two whiffs of that, and you’d be greedy.” 

 

In 2007, Napoleon had to be put down. I was there with him when it happened, stroking his paw. I had never seen anything like that before and cried so much that the vet offered to recommend a counsellor for me. I still find this a bit embarrassing. To be honest, up until that point I had rarely felt an emotion quite like it. I had no idea that it was possible to get so attached to anything. Let alone a dog. I still really miss Napoleon.

 

In 2016, I moved out of the family home, and it did not take long for me to start yearning for a pet again. I live in an apartment so for me a dog was out of the question. Instead, I adopted Tommy the Tabby, and later Dash the Tabby/Ragdoll cross, who had both separately been surrendered, by families moving overseas. Which I thought was serendipitous.

 

Before now, I would not have said I was a ‘cat person,’ but it turns out I am. Actually, scratch that, I am just an animal person in general I think. I literally go to the Royal Show just to adore, (and hopefully cuddle),  the livestock!

 

But I digress…

 

For a myriad of reasons, I have been feeling more ‘disabled’ than usual this year.

Being able to take care of Tommy and Dash, and receive the odd head-butt, nibble, and purr  in return, makes me feel needed, useful, and capable. Feelings I have been severely lacking lately. Plus, they are surprisingly good company And yes, they sleep on the bed.

 

I also have Simon in my life now. A human man who is as devoted to me as Napoleon once was, and who I adore just as much. Plus, he lets me go to the toilet on my own. Which is nice.

 

  For the record, Simon also  sleeps on the bed. As long as the farts aren’t too offensive. 

 

 

A second opinion could improve your sex life 

January 2025 Mark’s one year since Simon and I returned from our first ‘real’ trip  together, a holiday around the north Island of New Zealand, where Simon was born in bread, and which he is evangelical about.

We were both a tad nervous about it I think, not just because it was to be the longest time we would have spent together consecutively since we met in 2022, but also because I would be meeting Simon‘s family for the very first time, a big milestone in any relationship.

Everyone kept giving us  advice on how to tackle the situation, often adding things like, “ this trip will make or break your relationship,” and, “ you’ll probably end up hating each other by the end of it.” SPOILER ALERT: it didn’t. But it did make us question whether we needed better friends. 

 

Luckily, I have always been a big believer in the benefits of getting a second opinion.

 

Anyway,  Skyline Skyrides is one of Rotorua’s most popular attractions. Indeed, from the moment I discovered they had a luge track, I wanted in. Further, to ensure I wouldn’t miss out. I even rang ahead six months before we left to see whether I would be able to do it. I was told I would be.

 

When the actual  day finally came, I almost wet myself with excitement. The feeling quickly dissipated though, as the Receptionist refused me a ticket to the luge because, “ she won’t be able to use the straps.” For context, this comment (made directly to Simon),  was made without any inquiry as to my capabilities, and just based on the fact that I was sitting in a collapsible wheelchair. So, we protested, and that’s when things got a little strange. The attendant, (on the pretext of “double checking” with her manager), went and stood behind a clear partition (where I assume she thought we couldn’t see her), and mouthed something or other to no one in particular. This “conversation,” apparently confirmed her supposition.

 

I was crestfallen, but I insisted that Simon get a ticket for himself anyway. (there was no sense in us both missing out).

 

At the entrance to the luge track, Simon  decided to ask again. And what do you know? The guys who were running the experience (a.k.a. the ones who actually knew how it worked) enthusiastically encouraged me to have a go, while helping me to do so, and apologising profusely for the misinformation we were given and the ablism we faced. The only conditions were, that we use the two person luge (which did not have straps), with Simon  in charge of navigation and we only use the slow or medium lanes. That suited me fine, but for Simon, who is 6’3” it was a bit of a squeeze. 

 

It was a rainy day, and the track was wet and slippery, but that did not dampen my spirits. I absolutely loved it, cackling and squealing with delight as we zipped down again, and again, and again. We almost tipped over twice, but still I chastised poor Simon for not going fast enough. It was thrilling!

 

Thank goodness Simon thinks like I do about second opinions!

 

Throughout the planning of our holiday, we decided on arrangements democratically. Except for one…

 

I am a huge fan of the podcast ‘ my Dad Wrote A Porno’ which follows the adventures of Belinda Blumenthal, via the Belinda Blinked book series by Rocky Flintstone. In it, Belinda stays at a place called The Horse and Jockey Inn, and hanky-panky ensues. It goes without saying then that when I discovered  accommodation of the same name existed in New Zealand ,(and was conveniently located for our purposes), I vehemently insisted we stay there. However, it was the most unsexy experience I could have imagined. Our ‘double room’ had two single beds that could not have been further apart and could not be pushed together. Further, the room had no power outlets whatsoever, and the shower smelt like fish. A very alluring introduction to The Land of the Long White Cloud indeed. 

 

When we had dumped our bags, we went down to the in-house restaurant, looking forward to a hearty meal after a long flight, followed by a long drive. But the restaurant had just closed. I looked down at my watch, it was 8:20 pm. Again, I squealed with delight because, coincidentally this is exactly what happens in the book. I pointed this out to Simon, who could not have been less interested, (the party pooper). 

 

Finally, it would be remiss of me not to mention that sadly, the night/day receptionist’s name was not Sam. It was Des. This probably doesn’t mean anything to most of you, but if you know the series at all, your mind is now officially blown.

 

If only Simon had asked for a second opinion…

 

XOXO.

 

 

IB40

1984 saw the release of the world’s first mass marketed desktop computer, the Apple Macintosh. It featured a monochrome monitor, a floppy disk drive (ask your grandparents), and a one-button mouse. It was an eventful year for the 15,393,472-strong Australian population (it’s now 26,473,055) too. Medicare was introduced, OUR National Anthem was officially changed from ‘God Save the Queen’ to ‘Advance Australia Fair,’ and a 150g jar of Vegemite became the first product ever to be scanned at an Australian supermarket. Not sure how much it cost, but if you wanted to buy it you could have used a $1 coin or a $100 note, which were introduced to the country that year too.
Also in 1984, a contingent of the Queensland Police Force gathered at Surfer’s Paradise Raceway to set a Guiness World Record for the most riders on a motorcycle. Here, 35Police Officers (33 men and two women) all boarded the same motorbike at once, successfully breaking the previous record. Why they wanted to do this is unclear. But ride sharing apps weren’t a thing then, and desperate times call for desperate measures.
It wasn’t all beer and Skittles though, as interest rates hovered above double figures all year long.
Then, at 10.02am on Sunday 16 December, while the country was bopping along to Wild Boys by Duran Duran, and the festive classic, ‘Do They Know Its Christmas?’ was seeping into public consciousness, something absolutely wonderful happened.
After trying to find my own way out for three days, (I have always had a terrible sense of direction), I was born via emergency caesarean section at St John of God Hospital in Subiaco, nine days early and weighing a healthy 6lb 12oz.
Meanwhile, another TV star turned politician (Ronald Reagan this time for those of you playing at home),was gearing up to officially start his second term as US President, following a landslide election victory. Sound familiar?
Anyway, back to me…
I don’t remember much about the whole thing, but I am told that just as I was being liberated from the womb, the Salvation Army band (who were set up outside the hospital), burst into a rendition of ‘Joy to the World,’ relieving the tension of my traumatic birth. And there began a lifetime of weird, (and somewhat unbelievable)coincidences to shape my childhood.
I popped out funny-looking, and with all limbs and organs intact. But, at the ripe old age of three days, a doctor told my parents that I would be a’ vegetable.’ Ah, the eighties.
Turns out, he was wrong about that. You see, although I couldn’t roll or sit up, I started speaking at six months old, and one day I happened to call my neurologist ‘Pappa’ during an appointment. Needless to say, he was a tad surprised, and a new search for a diagnosis began in earnest.
Two years passed and still no one had a name for my peculiar combination of “abnormalities.” That is, until my doctors (having run out of any other ideas, I assume), presented me to Professor Brian Lowry, a Canadian Specialist, who just happened to be in Perth lecturing on a little-known and extremely rare condition, ’Incontinentia Pigmenti.’ He took one look at me, and voila!
To be clear, an official diagnosis didn’t really change anything for me, so I’m not really sure why they bothered. It did mean I was now often “invited” to be an exhibit at many medical conferences though. So, I guess it didn’t really have anything to do with me in the end. Incidentally, I’d advise against putting yourself or your child through this. Its humiliating.
Now I am forty. The big 4 0. How did that happen? Not literally of course. Obviously, I know how babies are made, my Nonna told me when I was about thirty-three. She said that chicks ‘come’ after a rooster sits on a chicken. So there!
They say life begins at 40. But Wikipedia says that middle age is from 45 to 65, which seems a touch optimistic. Either way, I have no qualms at all about getting older. Hell, I’ve already got a walking frame, so I’m practically set.
I do take exception to the surprisingly high number of people (mostly taxi drivers), who, when they know I’m forty, reference a certain movie starring Steve Carrell in a very thinly veiled attempt to ask intrusive questions. But then again, I should be used to it by now.

Happy 40th Birthday to me!

XOXO

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The naughty 40 list

My thirties have been a real rollercoaster. I have gained my independence and become a homeowner, become an Auntie, loved, lost, and loved again. I have skydived from 14,000 feet, done an aerobatics flight, abseiled down a skyscraper three times (once dressed as Wonder Woman), and been on a dream holiday to the North Island of New Zealand. Where I experienced the luge, and the Skyswing, which saw me drop from 50m high at 150km/h.

Its springtime here in the merry old land of Oz, and that means there is horse racing going on across the nation. Coincidentally, in my thirties, I also ‘learned’ to ride a horse, (AKA I sat on a very patient pony as she walked at a snail’s pace, while I was held on to her, so I didn’t lose my seat). This was another thing off the bucket list. And who was my teacher? I’m so glad you asked. It was none other than WA’s premier Jockey, ‘The Wizard’ himself! Funny though, I never hear our encounter mentioned whenever Willie Pike is profiled on the telly. It’s usually just stuff about all his Group One wins. Never mind, I’m mentioning it here. You know, just to help him out.

This year more than ever though, despite being the fittest I have ever been, I have never felt more disabled or been more blatantly taken for granted/taken advantage of.

But, soon (24 days to be exact), I will be forty. And, having nearly lived through four long decades and being all grown up now, I wish to share the following things I have learned

Someone else’s personal advancement (perceived or otherwise), is not my failure
The definition of ‘family’ doesn’t necessarily have anything to do with blood or marriage
Get everything in writing
I don’t NEED to control everything/do everything myself. But its better when I do
My capability is actually only set by me
Now, it’s time to set some new goals. These are the forty things I hope to accomplish in my forties (in no particular order).

Learn to say NO without feeling guilty
Write a book
Climb the Sydney Harbour Bridge – I am already in training for this, but no date has been set.
Get a tattoo
Fly first class
Be an extra in a commercial, movie or TV show – if anyone knows one that’ll have me, get in touch!
Do a Sky Jump in Auckland
Go on a cruise
Do a zipline
Start a podcast – This almost happened a few years ago. An Ex and I had what we thought was a great idea, and an awesome name, we even recorded an episode. But then we realised we broke up for a reason, and that working together could result in one of us wanting to throttle the other. Although, then we could have had a true crime show, and they are very in at the moment. So, I guess we should have stuck with it.
Become a wine connoisseur, or at least do a wine appreciation/tasting class – I know I prefer white, but I have no idea the difference between a Chardonnay and a Cab Sav, for example. Or indeed, if there is a difference at all. If anyone asks me what I’d like, I just say “Chardonnay” because I read it in a book once.
Prioritise myself
See an elephant in the wilds of Africa/ go on safari
Learn Auslan – it’s the first thing I am asked about when I tell someone I am hearing-impaired.
Ride in a race car (the faster the better)
Get an actual tan on my legs
See falling snow – I have been to ski fields in Thredbo, and stood on a glacier in Canada, but it’s not the same.
Sledding, snowboarding, and sandboarding
Establish an herb garden, and keep it alive
Attend an AFL Grand Final at the MCG (preferably featuring the Freo Dockers!)
Trust myself
Eat ‘real’ sushi, and buy something weird from a vending machine in Japan
Bake more
Try a Witjuti Grub and Es cargot
Learn to make drinkable coffee
Get a solid eight hours sleep on a regular basis
Have a meaningful job where I can make an impact
See more concerts
Do an Ozone/Halo tour at Optus Stadium
Join a choir – I was in the choir for most of high school and its one of my only happy memories from my schooling. Plus, I just recently rewatched Sister Act.
Become good at networking
Find a musical instrument I can play
Visit and explore New Zealand’s South Island
Hug a koala
Do an overnight train trip
Attempt pottery making – ok yes, I have also recently rewatched Ghost. But that has nothing to do with it.
Stop apologising for my existence/taking up space
Re-connect with my love of/play more boardgames and card games – Uno anyone?
Eat less and move more
Get married.
Seems I have a busy decade ahead!

XOXO

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Gee, way to make a girl feel special!

I am often accused of over-sharing , and I will openly admit that usually, I am guilty as charged. Sometimes it is because I am trying to be funny, (self-deprecation being my preferred brand of humour), and other times (usually when I have no choice but to talk to someone who is clearly freaked out by my existence), it’s to make me seem more relatable or put them at ease, to make the situation more bearable for all concerned. This doesn’t always work by the way.
In the year I turned twenty-one, I was invited to a lot of twenty-firsts. mostly those of school friends, who made up the bulk of my friendship group at the time. There was one invitation that I received though, which made me want to shrivel up and die. Something I’m pretty sure a party invitation is not supposed to do.
Here’s the story…
One night I got a random call from a person who went to the same high school as I did, but who was several years ahead of me, and to whom I had never spoken (no idea how they got my number). They said they were arranging a surprise twenty-first birthday party for their partner (also in my year) and wanted me to come. Now, before you jump to any conclusions, yes there was a real party and yes, the partner was in my year. But it had been almost four years since we graduated, and I’d had absolutely no contact with them since that time. Given this, and the fact that I don’t think we even shared any classes, I was a bit confused by the whole thing.
My hesitancy did not deter them, though, and they insisted on giving me the details, along with a few suggestions for gifts. Then they added,” by the way, there might be some kids there too, and they have probably never seen anyone that looks like you before. So don’t be offended if they stare at you, or laugh, or whatever. Ok?”
I must have sounded a little taken aback, because the caller went on to tell me a story, which I think they assumed would explain their advice.
“When you started year eight, our Head of Year told us all about you at assembly. He advised us we weren’t to stare at or bully you, but to help wherever we can, if you needed it.”
I felt like throwing up. Gee mate, way to make a girl feel ‘special!’ “Why the hell was he bringing this up, now?” I thought to myself.
While the original extremely miss guided speech was probably well intentioned, (it was the 90s, and I’m sure the school was as experienced with disability as they were with taming lions), it was also assumably not meant for my ears.
Come to think of it, it’s a miracle I didn’t end up as a massive target, with a huge spotlight like that thrust upon me . I was never really bullied there though. Except by this one, no doubt inadequately endowed arsehole for whom roughing me up on the regular for a year, made him feel like a big man. But he was actually in the same grade as I was.
Oops, I digress…
The call ended not long after, but because at the time, I had not yet fully accepted that I was disabled, or funny. Looking, (or wasn’t fully allowed to, as the case may have been), the effects of knowing that assembly had ever taken place, took much longer to get over.
I did not go to the party.
XOXO

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Heroes and villains

” You remain the hero of your own story, even when you are the villain in someone else’s. “Anthony Merra.

I have been meditating on this a lot lately, after I was attacked online by a relation of a family member, who has apparently been harbouring animosity towards me for removing myself from an ongoing toxic situation many years ago. Which, by the way, had nothing whatsoever to do with them at all.

The toxic situation was such that I was being “helped” (among other things), time and time again by certain people so much, and in ways so unnecessary, intrusive,  and inappropriate, that it became obvious that the “help” was rather more for others benefit than my own, and it had become very damaging TO ME .

For context, the culprits were very aware of my abilities. They were also acutely aware that I was able to assert myself where and when needed. They just weren’t willing to take any notice of it.

At first glance, their help could be seen as being caring, but once it stems to people literally shoving food (not to mention their grubby fingers) into your mouth or pressing drinks to your lips without warning, and following you into the toilet and remaining their while you do your business (remarking on your body all the while) “just cause I thought it’d help” is surely crossing some obvious lines, even to the most ignorant and/or unintelligent among us. . Particularly when you consider that I do not need, nor have I ever asked for that sort of help, especially not from them.

Further, the fact that I was asking over and over to be left alone was completely insignificant, as was any reference to my dignity. Have I mentioned this was well into my adulthood?

AS time went on, and with no one willing to help or stand up for me, for fear of causing “drama,” I began to get increasingly anxious whenever a gathering loomed, which was often. Afterward though, I’d usually be a mess, a mixture of frustration, humiliation, violation and isolation. Which those around me surmised as “over-reacting,” and subsequently ignored or ridiculed.

But that’s nothing to the immense guilt and vitriol heaped on me, when, after commencing sessions with a Psychologist I finally summoned my courage and decided enough was enough, cutting all ties for good.

This is where the quote comes in.

According to those who were not in my shoes, and who had no ability or desire to imagine themselves there, (AKA) everybody), the facts were that I needed the help (because they say so), they were the best ones for the job, (because they say so), and my shunning them was hurtful and disrespectful (because of course they say so, and their seniority  automatically implies their entitlement and my obligation), not to mention that I was extremely ungrateful.

Naturally I disagreed. Which as an adult (and a human being), I had every right to do. Further, I do not have to justify or apologise for  my position.

Until the relation contacted me, it had been a while since I’d given the situation any real thought. but after that ‘chat,’ I was right back there in an instant. and it convinced me that I had done the right thing, and that I will never change my mind.

Also, just for the record, I am not “a f***img c**t with no balls, (and not just because the phrase makes no sense at all).

I am Nina, and I am the hero of my own story. Like it, or not!

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