Disability is not a Time Capsule

I interrupt this ignorant transmission to deliver an important public service announcement: I realise I have a disability but I’m not Peter Pan, I have grown up!

  

Ok, I am the height of an average ten-year-old so possibly that has thrown you but let me make this very clear.

 

My life as a disabled child was very confusing.  Most of my extended family refuse to acknowledge the fact that I had a disability, (apparently this was just too embarrassing). 

 

I remember one day sitting on the floor watching TV when suddenly my uncle appeared in front of me angry that I had ignored him. Apparently, he had been trying to get my attention, but as he was standing on my left (aka deaf) side and I was facing the TV, I didn’t notice him.  When I told him this, adding that this was part of my disability I was subjected to a lengthy telling off.   Actually, I was not disabled, just very rude.

 

Sadly, this is just the tip of the iceberg. I was never allowed to admit that I had a disability. But, I was never allowed to do what the other kids did because, “don’t you realise you can’t?”  Not surprisingly I developed an identity crisis and severe depression.

 

As I got older, this did not improve. In my late teens and early 20s (even though I was almost completely self-sufficient) I was still being treated like a toddler.

 

On one family occasion, I remember we were all eating roasted chestnuts. A different uncle was feeding said chestnuts to his toddler grandsons by inserting them directly into each child’s mouth one after the other.  Then next thing I know the same slobber-laden fingers were in my mouth too.  EWWWWW! 

 

I pulled away and told him I didn’t want any. But he could not understand why what he had done was inappropriate (I was 24). I struggled with this issue for many years. In the end, I realised that you can’t argue with stupid, and in order to preserve any remnants of my self-confidence I cut all ties with this side of the family.

 

A lot of people (myself included) suffered because of this decision and I felt a lot of guilt. But I have no regrets. I did what was the best for me for once. I know this was my family, and in their eyes, they were helping.  But this is not a good enough reason as it made me feel belittled and inadequate.

 

The problem wasn’t so much what they were doing but rather their disregard and lack of respect for me as a person. My dignity was never taken into account.

 

No one has the right to make you feel bad no matter what relationship they are to you. Your self-esteem and sense of self-worth are precious.  Guard them with your life. 

 

It is a big thing to cut ties with someone though, especially if they are family.  So, if possible, try and explain to them why what they are doing is causing you so much anguish. Sometimes, it will help and the problem will resolve itself. 

 

But if it doesn’t, know that you are not alone. I understand.

 

XOXO 

Job Seeking for the Disabled 101

When I first started making noises about wanting to be a career woman I don’t think many people thought it would be a possibility (and I was far less disabled then than I am now).

 

I was told by those who humoured me, “You should go and work for the Government. They have to hire people with disabilities, it’s the law.” Or “I think there are special factories that will hire you.” This was not what I had in mind.  

 

I did get a job working for the state government and I loathed it.

 

Other people wondered why I felt the need to bother, “surely you’d qualify for a pension.” They’d tell me.

 

 

It has always been my intention to work, so in later high school I did many administration/computer courses and as much work experience as I could talk my way into.

 

My resume` looked good and I got a lot of interviews for office jobs but I never managed to snag one so I swallowed my pride and signed to a disability recruitment agency.

 

It worked and they quickly found me a job. But they insisted on not only coming to work with me but sitting right by my side all day long.

 

Apparently this is what they do for everyone as some people can’t work without them. This was not me.

 

I saw it as intrusive and embarrassing. It also meant that I had to work harder to get my colleagues to trust that I could do things. So we parted ways.

 

13 years on and I am still working for the same organisation in the private sector and loving it.

 

I am not in the same job though. I managed to move around and get positions in other areas through my own merit (that comes with confidence and experience), and at one stage  I had two directors fighting over me. That was nice.

 

Here are my favourite tips to help my fellow disabled jobseekers:  

1.      Be realistic: I am all for having a dream, but if you would like someone to pay you to do a job, it needs to be a job that you can actually do. For example, someone who is vision impaired would not make a very good air traffic controller and, if you can’t use your arms or legs then building and construction is probably not your forte either. That’s not to say that you should just do whatever. Just recognise your skills and limitations when choosing a career path.

 

2.   Be honest: you don’t have to discuss your disability with your potential employer if you do not think it is relevant. However, it might be a good idea to let them know of any possible hick ups that you might encounter. For example, are you likely to need a few extra days off? It is possible that this may limit your job opportunity, but on the other hand it may give your new employer a chance to plan ahead and will avoid awkward conversations later on.

 

3.   Your contribution has worth: I have heard of many people with a disability (myself included, who have been offered an unpaid work trial by an employer who liked them, but wasn’t sure if they were suitable. I always said no to this. If they want you to work for them then they can pay you! I wonder, does this happen in the able-bodied workforce too?

 

Note: I am not talking about actual work experience or doing a “prac,” in these cases you get something out of it too and you know where you stand.

 

4.   Take the help that is offered to you: there are recruitment agencies that specialise in finding jobs for people who have a disability. These can be helpful to get you a foot in the door. Beware though, if you decide you don’t need them any more they can be difficult to shake off.

When you find your dream job there are organisations such as Job Access (if you live in Western Australia) who can help you with overcoming accessibility issues, or in gaining aids such as screen readers if you need them, with little or no cost to your employer. This is done through grants though so conditions do apply.

 

5.   Have faith in yourself: Take it from me, everyone is in business to generate a profit. You got the job because the employer thinks you were the best candidate. You didn’t get the job as an act of charity so do your best and see where it takes you.

 

 

Working has given me a sense of purpose, given me a chance to learn new skills and grow as a person, provided me with an extra social outlet and given me the chance to be financially independent.

 

I hope that if it is what you want, having a job can do this for you too.

 

Good luck.

 

XOXO 

Let’s Hear it for the Jerks!

The other day a woman took a selfie with me without my permission. I was sitting outside the supermarket waiting for Damion, minding my own business, when a woman ran up to me (nearly knocking me over), snapped a selfie and ran back to her friends giggling. It pissed me off but I said nothing.

 

I chose to give her the benefit of the doubt. Maybe she was just really into walls and the blank white one that I was standing in front of was particularly alluring to her.  We all have our fetishes…

 

Then there was the older gentleman at a party I attended recently. He came up to me and shook my hand for no other reason than because he admired me. I thought that was weird.

 

Then, he came over for a chat and spoke to me so slowly, that at first I thought he must have been having a stroke. Alas, he was not.  This too pissed me off but again I said nothing.

 

 

And why not? Because I did not want to seem rude and ironically, I didn’t want to hurt their feelings or embarrass them.  This pissed me off even more.

 

I went to the football a few weeks ago. The match was between Fremantle and Collingwood at Domain Stadium and took place just days after the bombing at the Arianna Grande concert in Manchester.  Security was tight and we were told that we had to present our belongings for inspection before entering. Fair enough.

As we approached the front of the line a security guard approached us and asked if he could inspect my handbag. The problem was he asked Damion not me. I’m sure I don’t have to tell you how this made me feel…

 

I have thousands of stories like this and each time I recount them, people try to placate me with phrases like, “they’ve just never seen anyone like you before, they didn’t know what to say/do” or  “they probably just thought it would be easier for you if they spoke to me.” This is not good enough!

 

Sometimes my disability exhausts me. The fact that people are either overwhelmingly inspired by my presence (this is possibly an exaggeration) or constantly in need of being taught how to be good humans is a lot to take on. I feel as though I am either walking around in a spotlight or completely made of cellophane.

 

It is very simple not to be a jerk. Billions of people do it every day so stop it, now! Your jerkish tendencies put me in a very awkward position. I was not put on this planet to teach you manners. And, I am just as entitled to feel comfortable anywhere as you are.

 

On the other hand, if it wasn’t for jerks I would have never started this blog in the first place (see Inner Musings of a Funny Looking Kid: the origin story).

 

After all, its people like this that make the rest of us look awesome!

Nina the Narcissist: The World’s Best Abseiler

A year ago today I attempted my first abseil down the QV1 building in the Perth CBD.  A week ago today I tried it again. What a difference a year makes!

 Long story short (a first for me I know) this time, I actually did it.

 I had everything going for me on this attempt.  I had a super supportive instructor in Rob (I have never met anyone so encouraging. I am thinking of hiring him to follow me around all the time now). Miraculously I was feeling well (despite being unwell with suspected kidney stones just days before). And the weather was good.

 I had been planning this attempt in my head all week, determined to do it all by myself this time.  That was my measure of success.

 In my mind, last year I failed. Not that anyone else thought so though.  I kept being told, “you stepped off the top, that’s more than I could do.” But that wasn’t enough.

 What people don’t understand is, I don’t do things to impress them. I do these things to prove to myself that I can.

 Although this can’t be strictly true. otherwise I wouldn’t brag about it on my social media channels (did I mention my blog has its own Facebook page?). 

 I have just realised that I posted my “success” photo almost immediately after. Mentioning that it only took me less than five minutes (The time is still a subject of debate) and that I did it completely by myself.

But I neglected to mention (or thank) the people who donated to my cause which allowed me to qualify for the abseil in the first place

 I completely forgot about the reason I was doing the abseil to begin with. 

 Oh my god!  Am I a narcissist? It’s probably narcissistic to ask that.

 By the way, thank you to everyone who so generously donated to my fundraising for the Perth Children’s Hospital. I am very proud to announce that with your help  I raised almost $1,000. 

 Thank you especially to Revolution Pilates who allowed me to post a begging flyer on the wall of the studio. 

 The problem is, I am so used to being congratulated for wiping my own bottom that when I actually do something worthwhile I can’t help but brag.  And even worse than that, I get a kick out of it.

 Dear God, help me, I’m Donald Trump!

 Ironically, by putting this down on paper I am going to get (having said it, it would be very embarrassing if I didn’t) people leaping to my defence. And the cycle continues…  Aargh! 

 Where is the line? On the one hand, isn’t pride one of the seven deadly sins? But on the other hand, if you don’t respect yourself enough to be proud of your own achievements then you are effectively sending out a product that (at least to you) is below par.  That’s not being respectful to others. You wouldn’t deliberately give someone a rotten apple, would you?

 My head hurts!

 Oh screw it! The fact is I did actually did it (Come on, you didn’t think I wasn’t going to brag a little bit did you?).

 I did cheat a bit though. I can’t even walk 160 m in less than half an hour. How on earth did you expect me to be able to abseil that far in under five? Without falling that is.

 I had to admit that my legs were pretty useless. So I abseiled with my hands.  No, I didn’t do a handstand all the way down.  I simply sat back in my harness and lowered myself hand over hand with the rope (I  think that’s how people in wheelchairs do it). It proved to be quite effective. I’m thinking of getting around that way all the time now.

 I was quite thankful that I am a girl though, if you get my drift.

When I got to the bottom I couldn’t stop smiling. And my (dare I say it), fan club who had come out to watch me and were screaming their support the whole time, only made my smile bigger.

 I had mentioned a few weeks ago that after I did my skydive in October 2014 I have never been able to find a rush like that again. 

 At last I think I have found one.

 XOXO 

 

Training Day: I even surprised myself!

 

Lately I have been feeling decidedly unable.

 

My legs have been feeling weak and wobbly. My ears have been hindering my social life and my eyes are seriously contributing to the black hole that is my apartment.

 

So, it was no wonder that I was feeling very nervous about doing the training for my abseil. 

 

I know I say I am nervous before I do anything “exciting,” but considering the disappointment I felt when I had to be helped to the bottom of the QV1 building last year, and my aforementioned wobbliness, I really didn’t think I would cope.

 

The training takes place at a quarry where the scariest thing for me was not the actual abseiling down the rock face but walking the path to get there.

 

There are so many rocks and trees to trip on, it’s a miracle I did not break anything.

 

I don’t think this has anything to do with me though. Possibly it was the fact that I was being held up by the back of my harness and thus being moved around like a marionette that did it. I am certainly not complaining either.

 

Cecily was absolutely no help at all. I really need to get myself an off-road walking frame.

 

While everyone else had to trudge up the mountain I was chauffeur driven up in the Ute. This was no picnic mind you, the ride was so bumpy that I bopped my head on the roof of the cabin at least twice. Luckily, I was already wearing my helmet. 

 

Thank goodness I only had to “walk” along the ledge at the top.

 

I really love working with Urban Descent. They don’t presume to know the best way for me to do things, they ask me. They probably would even have let me go by myself if I wanted. Yeah, like that was going to happen!  

 

In the end, I did three abseils. A 20 metre, a 30 metre and another 30 metre where I had to lower myself with my arms by going down a rope instead of walking down the rock face.

 

The idea of this freaked me out. I was sure my arms were not up to the challenge. But they were, and so were my legs.  Damion couldn’t help saying “I told you so!”

 

I was amazed and in such a good mood that it hardly even bothered me that I heard someone say, “you’re such an inspiration” as I went over the edge.  I was doing what everyone else was doing, and I had help.

 

There was a lady there who is terrified of heights but she was doing it. I’d say that is far more inspirational, especially when you consider that I’m only doing it for the attention! LOL

 

It is so annoying that I get so much credit for being disabled. It’s embarrassing and to be honest very discouraging.

 

I had learnt last year that a successful training session did not guarantee success on the day. Even though they tell you that abseiling a building will be easier. So, I’m still a bit nervous.

 

I needed to do it again this year. My ego won’t be beaten by a mere 160 metres. However, after this I think I’ll hang up my harness.

 

If it doesn’t rain I might be ok and, at least I get to wear real clothes this year.

 

Wish me luck!

 

XOXO 

 

My reaction to the ABC documentary “You can’t ask that! Visual difference”

 

After watching the ABC’s fabulous documentary “You can’t ask that! Visual difference” naturally, I felt a blog coming on.

 

I also have a very sore neck from nodding in agreement. And my tummy hurt from laughing so hard.

 

I know I have covered this topic many times before. But what can I say? I couldn’t help myself.  

 

I am not in the habit of doing it, but if I asked someone “do you think I’m pretty?”  The answer will most certainly be yes.

 

If I make a negative comment about my appearance, I can almost guarantee that I will be contradicted.

 

Often, not only contradicted, but also told off.

 

I get random strangers tell me that I am “gorgeous, beautiful” or worst of all, “cute,” completely out of the blue.

 

This is not because I look like Scarlett Johansson I assure you.

 

Then there are the conversations, often with strangers, who feel the need to tell me what might “help” me to look more “normal.” 

 

Or the one with people that tell me about someone I remind them of (not because we both look different though). They used to be miserable but after having plastic surgery got married and lived happily ever after. 

 

They possibly also got themselves a rainbow coloured unicorn.

 

Then there are the people come up to me on special occasions (after I have spent a king’s ransom and an entire day making myself look gorgeous ) who say “it’s such a shame that you have to bring that ” when they see me hobbling toward them with Cecily, my walking frame. 

 

And my favourite, the people who say, “I don’t see your disability, I just see Nina,” without actually being asked.

 

This, by the way, is much more offensive than if you were staring!

 

I hate that people assume that I am ashamed of myself because I look different or because I am disabled.

 

Sure, I’d love to have bigger boobs (or any boobs at all actually). It would make my clothes sit so much better. But other than that, I don’t think I would change anything if I got the chance. 

 

I realise that a few people won’t believe me. But that says more about them than me.

 

Of course, they these things because they think they need to boost my confidence but what they are actually doing is trying to convince themselves that they are not uncomfortable with how I look.

 

It’s 2017, a disabled or visually different person is no longer required to lock themselves away (Yes there was a time when it was commonplace, even in Australia).

 

To borrow a phrase from another marginalised group in society, “We are here, we’re queer, get used to it!”

 

 

I won’t bother telling you how confident in myself I am, because if I need to do that, then your discomfort with my disability would have prevented you from finding my blog anyway…

 

What I will say though, is that if you’ve had as many operations as I have, you wouldn’t be too keen to have more surgery either.

 

Furthermore, what would be the point? To get myself a boyfriend? 

 

Well, there’s more to life than that.  And besides, I’ve already got one of those!

 

XOXO

My Boyfriend is so…….

 

My boyfriend is so…

 

 

My boyfriend is so aggressive. He’s always pushing me around (in my wheelchair).

 

 

My boyfriend is so rude. He’s always telling me where to go (coz if he doesn’t, my blindness  is bound to get me lost).

 

 

My boyfriend is so nasty. He is always yelling at me (even with my hearing aid, sometimes it’s the only way I’ll answer).

 

 

My boyfriend is so patronising. He repeats himself over and over (see above).

 

 

My boyfriend is so selfish. He never lets me do anything (unless it’s fun)

 

 

 

My boyfriend is so violent. He always beats me (in Monopoly, Guess Who…)

 

 

My boyfriend is a West Coast Eagles supporter (no, I don’t understand it either)

 

 

 

The moral: there is usually more to every story.

 

 Make sure you are in possession of all the facts!

 

 

 

XOXO