When 5 year-olds raid your photos

I am called a “Super Hero” a lot. Not just when I am doing highbrow things such as skydiving or abseiling down skyscrapers (which I do for my own enjoyment not to save the world from evil-doers), but when I brush my own teeth or wipe my own bum as well.

I hate it because it is patronizing, ye of little faith.

Or do I…

I was chatting with my favourite 5-year-old twins on the weekend. The girl and I have always gotten on well (once I had answered her 1000 questions along the lines of “what are your intentions with my friend Damion?” at our first meeting that is). We both share a love for unicorns, Barbie and all things pink. But, as I am a girl (a highly infectious carrier of girl germs) and a very non-athletic girl at that, the boy and I have never really bonded. Until now.

While my fellow pink-lover and I were catching up, I mentioned the word “poncho”. When she did not know what a poncho was, I got out my phone and showed her a photo of me wearing one in the rain. She knew that I have a very cute photo of us together and so, she asked if she could look at it again. Of course, I said yes.

This lead to her investigating what else “cool” I had in my photo album (fear not, this is not going where you think it is). She found the animation my friend Neil sent me of my face super imposed onto the body of a unicorn which I thought was dancing, but which miss 5 informs me is actually farting (thanks Neil) and showed it to her brother. He was not very impressed.

She then found a photo of me and Batman. Suddenly his interest was piqued. “Do you know Batman?” He asked.

I am all for kids being kids and using their imagination as much as possible, but I had no idea what to say. So I told him the truth, I met Batman and the Hulk (they had found that photo by now too) while I was out walking one day. They were both very impressed.

He then sat really close to me, almost on my lap and asked in amazement “Nina, are you Wonder Woman?” he had just seen me dressed in her costume)

I know I should not have but I was flattered that he thought I could be (especially when he has seen me use both a wheelchair and a walking frame), and I was so chuffed that we were finally bonding. So naturally, I said that I was. Adding that they needed to keep it a secret, because superheros are not supposed to reveal their secret identity. He hugged me, which I took to mean that my secret was safe.

God help me if there is ever an emergency while I am around though…

Luckily, at that moment he noticed that I have no games on my phone and the subject was changed. I then spent the rest of my visit being instructed on which games I needed to download.

Phew!

***all these photos/animation are on my Instagram @NinaMarieButler if you are interested.

XOXO

 

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Walking in the rain won’t make me grow taller, and other information that doesn’t help

Wet NinaIt is winter here in Perth. We are not very far into it but already this has been our rainiest start to winter in a long while.

When I was about five, my Uncle told me that if I walked in the rain it would make me grow taller.

Of course, he only told me this because he thought it would encourage me to go out to the car. Mum and Dad were waiting and I did not want to leave Grandma’s.

I think this is why I have always loved being in the rain.

Whenever anyone offers me an umbrella, I will usually refuse, saying, “no thanks, I’m hoping it will make me taller.” That, and I couldn’t hold an umbrella and manoeuvre Cecily or close the damn thing anyway.

I still say this and when I do, people laugh and I laugh with them, but there is always a tiny part of me that hopes that one day it might actually come true.

Walking like a handicapped turtle, I often am stuck in the rain. I have been caught in the rain so much that I should conceivably be 20 feet tall by now.

A few pairs of pants and a couple of skirts are tighter than they normally are. But I do not seem to have grown any taller.

It has been many years and I think if it has not happened by now it is probably not going to.

My Uncle may have told me a fib.

Speaking of useless information…

In case you were not aware, telling me that you always feel positive after we catch up is a nice thing to say. Except, if you follow that up with “it always makes me feel better about my life.”

Telling me that my new shorter hair suits me is very much appreciated. Unless you add, “it makes me realise how awful your hair look before.”

Introducing me to someone by saying, “she’ll probably really like you, she is disabled too” is not enough to guarantee a lasting friendship.

Commenting that I remind you of your favourite cousin because we are both very disfigured is not really an ideal icebreaker. Especially when you then insist on taking me over to your group and saying, “hey everyone, who does she remind you of?”

If you hear me giving someone a compliment or making a comment in response to a question, adding “yeah but, she’s blind,” is not only unnecessary, but also very unhelpful.

“You don’t mind if I ask (insert inappropriate assumption here)” is not a question. Even when your voice goes up at the end of the sentence.

Finally, I know it is a rite of passage for a disabled person to be asked, “Can you have sex?” But that does not make it appropriate!

Just saying…

XOXO

Needle-less to say…

Today I had an immunisationand it was very unremarkable.

Usually that would make something not blog worthy, but this appointment’s mundane this is precisely what made it so interesting…

Although disability does not always equal illness and I was not a sickly child, various mechanical faults meant that I had a lot of surgery as a child.

The surgery in itself was massively traumatic. I would worry about it for weeks and sometimes months leading up to admission, viewing the operation date as a sort of end of days.

So worked up in fact that before one operation (I think it was the tonsillectomy), my parents chose not to tell me until the very last second. This did not help as when I found out, not only was I stressed out about surgery but also annoyed at not having been told. I was 12 at the time.

This may seem a tad demanding for a child so young, but due to my condition, I was very advanced intellectually until I reached puberty. Then I just developed like everyone else.

This meant that as a very small child, when I sat in front of a doctor or specialist, and he or she explained everything to my parents instead of me, I would get very pissed off!

I can understand why a doctor would do this. I mean, there are not too many four-year-olds that could understand all the medical jargon, and those who think they can (except me) were probably just up themselves.

At the age of 33, I still encounter this occasionally and my reaction has not changed. Although my ability to excuse it certainly has.

Anyway, with every surgery, as with the investigation that would lead me to need it, I would be required to have lots of blood tests and needles. Again, I was not a fan.

On the way to get said needle, I would freak out. Obviously, this never had any affect so I tried another attack. Bargaining. I tried to make a deal with anyone and everyone to avoid getting the jab.

Naturally, everything took ages and that prolonged the trauma.

I should have been a solicitor because even as a tiny child I could argue a great case.

These cases never got me out of medical procedures (in which case I resorted to crying and the laying on of lots and lots of guilt), usually, they just resulted in my sedation. But, they help me get out of being in trouble quite a few times so YAY.

I remember when I was about six furiously telling my parents (as if it were a punishment to them) that when I was big, I was never going to let anyone give me a needle ever again and they could not make me!

Yet this morning, I not only went to an appointment that I made myself. I rolled up my sleeve and presented my arm without being asked. The whole thing took about three minutes, it was painless and I did not have to risk giving up my favourite doll.

Oh how times have changed…

XOXO

My (not inspirational) white-knuckle walk

On Sunday, I attempted to do the 4-kilometre course of the HBF Run for A Reason, which snakes through the streets of inner city Perth and ends up in Gloucester Park racecourse.

I’m not sure why, although I assume it is only because I am disabled, but when I do stuff like this people always want to know why I do it.

Actually, at one point, I was asking myself the same question!

People expect me to have an inspirational reason such as proving others wrong or overcoming adversity. But honestly, I only did it because my work paid for me to enter and someone mentioned a free breakfast.

Last time I did it (in 2014), I used Cecily and although I did complete the whole course, it was very hard work for which my only reward was shin splints. I was in too much pain to feel any sense of accomplishment.

I convinced myself that Cecily was the problem and so this time I pushed Seymour (my collapsible wheelchair instead. He was not any more of a help, (it is surprising how unsteady they are when they’re empty)  but at least he gave me somewhere to sit once I finally conceded defeat.

The first 2 kilometres were ok (because they were mainly downhill) but as I reached 2.5, my body started to pack it in. I thought about stopping, but there were witnesses, and people driving cars in the opposite direction kept telling me to keep going. My pride urged me on.

By this time, I had been walking for about 2 hours

I was walking so slowly those children that barely reached my hip kept zipping past me. Show offs.

At the half way point there were almost no other competitors as far as a person who is not visually impared’s eye could see.

However, the sideline “entertainment” was still around and the Incredible Hulk came over for a photo. I was relieved to see someone who looked greener than I did and who in keeping with character, didn’t tell me I was brave.

I assume these people were under the impression that my time keeping was fruitless, because Batman came over, sat in my chair and waited for me to push. Excuse me Batman, I am not an Uber!

I continued (minus a super hero) and was about to give up again, when we reached a large group of spectators. Again, these were witnesses so I kept on shuffling and dodging the people trying to give me bottle after bottle of water (why were they all only in one area?).

I was in massive pain by now, my wrists hurt from gripping Seymour so tightly and my legs hurt because well, they are my legs. Mum was nagging me to sit down (possibly recalling the moaning about the shin splints) and I was desperately checking that the coast was clear.

Then, at last, someone yelled the one thing that would convince me to stop, “you’re an inspiration.” I was done. I am not here for your inspiration!

I sat down on Seymour and immediately felt sweet relief. Poor Mum had to push from then on.

100 metres before the finish I started thinking about the movie Cool Runnings (you could say it was an inspiration),

I got up and walked the rest of the way. Although I was not carrying Seymour, I managed to hobble over the finish line just as the commentator said, “Everybody give them a hand, they’re the last people over the line.” There was a smattering of polite applause.

I wanted to shove the microphone up his nose.

As I sat in the pavilion chowing down on my complementary breakfast I expected to feel the wave of disappointment that I usually get when I think I have failed. However, it did not come. This was particularly odd, as I had willingly given up.

Instead, I chose to focus on the almost 3 kilometres I did walk. I was proud that for once, my ego did not get the better of me.

There is absolutely no way I am ever doing that again. My legs are killing me.

XOXO

What I learned from my worst ever break up

There are few things more devastating or more bruising to the ego than being broken up with. Especially when the other person gets in first. This has of course happen to me. Once, a mere week after I had been sitting in a café with a girlfriend telling her how unhappy I was, only to have her say “Well, there is only one thing you can do then Neen, break up with him.”

As it turned out, at that very moment he was in a pub having the same conversation and getting the same advice. Problem was, he acted on his.

I am embarrassed to admit that up until that point I had rarely ever felt a grief quite like this. Except for the time when I held the paw of my beloved dog Napoleon as he went off to sleep for the very last time. I cried so much and so loudly that the vet wanted to refer me to a psychologist. Sadly, this is not an exaggeration.

I have never been what you would call “a classic beauty,” in fact I was affectionately known as Gollum for a while. When I started noticing boys, I also noticed that (in the American TV shows I watched at least) teenaged boys were not looking for the girl with the “nice personality.” And I was too young to realise these kind of boys were not worth going out with anyway.

Moreover, being a “girlfriend” seemed a bit draining. I mean, did I really want to have to worry about why my “boyfriend” did not want to sit with me at lunch? Of course I did!!!

It was then that I made a secret pact with myself; if I ever got the chance I would take whatever I could get and be grateful for it.

“There is nothing more attractive than the scent of desperation” said nobody ever.

Fast-forward about twenty years. I met a guy that was not only very cute, smart and funny. He, albeit after a lot of convincing (why was that not a red flag), even agreed to go out with me.

We ended up dating on and off for several months. Because I liked him so much and he was not from the bottom of the barrel (as I was convinced I was destined for), I was happy to let the fact that he seemed embarrassed to be with me in public or the constant jibes about how sad I would have been if he had not agreed to go out with me slide.

Such was the abysmal state of my self-confidence.

For the most part I loved being a “girlfriend” at long last. But after a while, even I started to question why I was there. Are you supposed to feel happier by yourself when you are in a relationship?

Then he broke it off because (for various reasons) my disability made him feel less of a man. Have I mentioned that he too was disabled?

I was devastated. Although, I never let him know that. In fact, during our last conversation I was so bright and cheery that he thanked me for “letting him off the hook so easily.” Like I had a choice!

I cried myself to sleep on many a night. All the while knowing that deep down, it was what I wanted too. So why then, was I grieving at all?

If I am honest, at first it was just pure indignation. He had bruised my ego. An ego that had been inflated only because someone who I was into, seemed to be into me too. Somehow, I had mistaken ego for confidence. I had also done something that I know many people do. Instead of getting my own, I sought gratification of my self worth through another.

Plus, now I’d have to tell everyone that I had been dumped, opening myself up to their pity and, I would have to admit I had got it wrong.How embarrassing.

Then it was fear. What if I was alone forever now? I think this is why I did not have the courage to end it myself.

Finally, I started thinking, if another disabled person could not handle my disability, how would anyone else?

I realised the hard way that a new relationship would not help either. It just perpetuates the cycle.

I had to see myself as awesome on my own and not through the eyes of anyone else. It’s a cliché, but it’s true.  In the end, a bloke telling you that you are gorgeous holds no more weight than when your Mum does it if you do not believe it yourself.

I did dust myself off and try dating a few more times after that, thinking that I respected myself enough to make it work. I didn’t.

It did however make me feel more “normal” than ever before.

All of this happened a good while ago, but it wasn’t until recently that I took the time to think it over rationally. I.e instead of as “we broke up because he was an arsehol,’ which of course he is not.

At the time, all my loved one’s told me “it’s for the best”. It didn’t seem like it then, but it does now.

XOXO

Employable Me AU – Food for thought

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As a disabled woman (#identityfirst), I was eagerly awaiting the premiere of Employable Me AU. At first I was a bit sceptical; would it be a patronising wank-fest? Would possible employers be hailed as heroes for the charitable gesture of taking on a disabled employee? Could I watch it without vomiting or throwing something at the TV?

Then I remembered this was the ABC, not commercial television. They may be politically biased, but at least they recognise disability as a human condition. Phew!

I’ll admit, I hadn’t heard of this show until the Aussie version was advertised, but I imagined it to be the employment version of the BBc series The Undatables (which I loved by the way), and in a way, it was.

OK, so there was no vomiting, nor was there any urges to throw things at the TV, (fortunate, as I was watching it on my iPad and the TV was in the other room so I would have had to get up). There was however, many tears.

As I watched, I felt a tremendous sense of guilt at being employed by a great organisation and how much I have been able to advance my career. Further, I have been working here for almost 14 years so I felt a bit greedy. Sometimes even, I am astounded by how good I am at making things all about me. In my defence though. I also felt enormously grateful.

Anyway, long story short, I really liked it.

It actually took the time to highlight the fact that (not unlike everyone else), disabled employees can and do bring unique insights and talents to the work place, even one that is not a sheltered workshop. HOORAY!

If I do have one criticism though, it is that all the disabilities that were featured were all intellectual or neurological. There was no one whose disability was purely physical, i.e. someone who is blind, deaf, missing a limb or who has a mobility issue.

Yes, I could relate to the prejudices that the subjects faced as disabled job seekers, but not in the same way. Remember, not all disabilities are created equal.

At least two of these people had a job coach with them to help them secure a job and settle in, just as I did back when I started (much to my embarrassment). However, not one of them needed assistive technology ( such as a screen reader) as I do now.

This might seem insignificant, but in omitting this, they missed the chance to show employers how easy it is to procure/use things like this without disrupting anyone else’s productivity or adversely affecting the company’s profit margin. That goes for building/work station modification too.

This seems (in my experience) to be one of the biggest hesitations for employers taking on a disabled person as a new staff member.

Some one asked me the other day what the biggest challenge as a disabled person in the workplace is for me. The answer is trust. Because there is generally such a low expectation of disabled people in general, I find that often people are hesitant to trust me with important tasks, believing that said task would be far beyond my capabilities or comprehension. It isn’t, unless I say it is.

I found this a lot in the beginning, but thankfully, it happens less and less these days. I do get the odd person appear taken a back when they meet me in person after working with me by phone or email though. Again, this goes back to low expectation and I think this will stop with an influx of highly capable disabled employees (such as myself, LOL) being around.

Now all we need is to make the public realise that having the desire to work (even if you are disabled) is not inspirational, it is normal.

XOXO

 

Indoor Skydiving Part 2: Why I prefer traditional skydiving

 

 

Previously on Inner Musings of a Funny Looking Kid, I covered the differences and similarities between traditional and indoor skydiving.

 

Remember when I said that the wind tunnel reminded me of a cross between a fish bowl and a cookie jar? Well SPOILER ALERT, this is precisely why I was not a fan.

 

I was fairly Zen before the original jump, but as I got nearer and nearer to my turn in the wind tunnel I had become totally unglued.

 

Looking back, this could have been because I had not absorbed anything I had been shown in the training video. Then, when I asked if I could keep my hearing aid on in the tunnel the instructor said it was my choice, ut if they needed to communicate with me, they would use hand signals.  

 

There followed an awkward conversation (for him not me) where I told him that hand signals would be pointless as I couldn’t see them.

 

For the record, yes, they were forewarned of my requirements, but in their defense, it was a very busy morning.

 

I kept my hearing aid firmly on.

 

Ever the drama queen, as I was lead into the wind tunnel by my instructor I began yelling at him over and over “please, whatever you do don’t let me go.”  He didn’t and here is where my nightmare began…

 

As I felt my feet lift off the ground I was immediately hit with the force of the wind, which at almost 300km/h is what I had experienced during my 60 second freefall from the plane. No biggie.

 

 I may have only been hanging there for mere seconds but to me it felt like hours. Plus, I had no idea how much longer I had to go.

 

With no relief of a parachute opening and some heavenly floating to look forward to I started to panic.  I began   squirming and true to his word, the instructor held me tighter. I didn’t know what the sign was for “GET ME THE HELL OUT OF HERE” so I began frantically shaking my head. Still the instructor didn’t get it. Did he think it was a tick?

 

Suddenly, I remembered reading (during a daydream of being a natural), that when you are learning formation flying the first move they teach you is to fly on your back. So, I tried to roll over. This is a massive no no unless you are trained because it is easy to fall out of the wind while doing it. Like I nearly did. 

 

It did the trick though.

 

To my horror this is when I realised that the tunnel has a 360-degree viewing platform where people could watch, with their noses pressed up against the glass just metres from where I was attempting to fly. Did I mention it was a busy morning?

 

Not only did I fail but everybody witnessed it. To make matters worse, I received a conciliatory round of applause (which no one else got by the way), and one guy even tried to high five me.

 

I say “tried,” as when he put his hand up I didn’t see it and kept right on walking. Seems he didn’t realise I am blind either.

 

My ego was bruised and the feeling of pity from the watching crowd was palpable.

 

This, and only this was what got me to take my second turn.  Mercifully, this attempt was a success, and not surprisingly the video of this attempt is the only one I showed everyone. Damion however was more than happy to show everyone my failure.

 

I like to think this is because he is proud of me for overcoming the adversity.

 

Having experienced both now, I would have to say that the traditional version where you leap out of an aero plane from 14,000 feet wins hands down. If you are going to do them both though, indoor skydiving is a great place to start. But, if you are doing an indoor skydive, go the whole hog and add on a “high-fly” if it is available, it’s oodles more fun.

 

The indoor skydive did get the adrenaline pumping just as the original skydive did, I was shaking for hours afterward and this is a feeling I have been seeking since the original jump. But, with this I didn’t get the overwhelming urge to go back in and try it again.

 

It might be my ego talking, but I can’t see myself doing that again.

 

Now I have my heart set on zip lining. The higher the better. Anyone want to join me?

 

XOXO

 

PS – You can see the footage of my false start on the Inner musings of a funny looking kid’s Facebook page.