32: A Year in Review

 

Almost every night for the past month, I have been dreaming about kittens and every night more and more of them appear.

I am not a cat person so I decided these dreams must have a meaning, and I went on a mission to find it.

As you may have guessed, I am the kind of person who will read a horoscope, and pick out the good bits and discard everything else. With dream interpretation, I was no different.

I sifted through information that indicated I was pregnant (I am not, I checked), and that foretold of an upcoming betrayal from a loved-one (“snore”).

But my favourite?  Apparently, kittens in dreams indicate that I have an unrequited sexual fantasy that I am trying to suppress. Really? How interesting.

Then I found one that said that dreaming of kittens meant I was in a transitional phase that would lead to independence.

Ah ha! Now, this is something I can work with.

During my research, I also discovered that I share a date of birth, the 16th of December with Ludwig Von Beethoven and Jane Austin. This has nothing to do with anything. I just thought it was cool.

My 32nd year has been my best yet. I moved to my very own place and finally began living like a proper adult.

Damion moved in and for the record, we are living together out of wedlock (what an inviting term) and we have no plans to get married so stop asking.

I have somehow landed in a job that I genuinely enjoy and that I get to flex my creative. muscle in. I am also a very active member of the team, something that has been missing in my work life for some time.

My blog seems to be gaining steam and I have had some awesome opportunities to appear in other publications and as a guest blogger. I have had a few lovely people get in touch to say they enjoy my writing and are learning a lot. I love when this happens. It spurs me on.

In bucket list news. This year I finally got to fulfil my dream of riding a horse…err pony and I successfully managed to abseil 160 metres down the QV1 Building completely by myself. I even got to see my beloved Fremantle Dockers win a game live and in person.

I learnt that when setting up a home you should always buy a bigger fridge than you think you will need as every man and his assistance dog will assume you are starving and bring you food. Trust me, I had to get a second freezer. I am not complaining by the way.

Best of all, this year is the first one since I went blind in 2009 where I have not been admitted to hospital at all! I have had far fewer infections this year too. This in itself is a major miracle.

On my last birthday, I was not very well. I had a blood infection, which had seen me need to take three months off work. It affected pretty much my whole body. I was really stressed out and as you can imagine, quite depressed.

A lot of this was because I never had a spare second to scratch myself, I was finding my feet in a new job and I was trying the independence thing for the first time.

I found myself in the position I had always wanted to be in but without the ability to enjoy it. There was only one thing for it. I needed to slow down and cut down on my stress. Here is what I did.

As a people pleaser, I constantly feel the need to prove my worth to others.  I just cannot say no.

Consequently, if there is a committee to join or a cause that needs help, you can bet I was somehow involved.

Despite being afraid that people would be let down, this year I stepped down from all of these, always apologising profusely and offering to join back up “next year” to appease my guilt. I probably will not though if I am honest.

I have stop trying to make my life resemble a Hollywood movie too. I decided that I do not need to accept every single invitation I receive.  It is better for me to say no to attending something that would be awkward for me because of my various disabilities if it means I feel safer.

 

What is the point of going, not being able to participate and feeling like a moron? The anxiety in the lead up to events such as this is not worth it.  No one really cares how many Facebook check-ins you make anyway. Further, friends who do not understand why you cannot attend their event and make it a big deal, are possibly not good friends at all.

Ironically, in doing this, I am possibly the busiest I have ever been and I find that I enjoy things a lot more. It is funny how life works!

Speaking of false friends, I have also done a comprehensive clean out this year. As a person with a disability, I had a lot of acquaintances but very few real friends. I defined a real friend as being someone who wants to spend time with me because they enjoy it. Not because spending time with me makes them, feel better about their situation/body. Or worse, because they feel the need to fulfil a civic duty.

To those who have never had to deal with it this might sound harsh. If my being around happens to inspire you then so be it, but I have things to do.  So, if you need someone to make you feel better about yourself see a counsellor

Congratulations to those still in my life by the way.  You have made the cut LOL!

Finally, I have learnt that my relationship with Damion is perfect as long as it works for us.

The biggest lesson that I have learnt this year is that if you constantly feel the need to tell people how happy you are and how perfect your life is, it is probably not. A full social life and a million thank you gifts for favours are nice but a sleep in is better. And, the word “no” is fun to say. Ask any toddler.

Independence Ahoy!

I credit this new philosophy with the massive improvement in my health.

As I write this my 33rd birthday is two days away. I wonder what lessons the next year will bring.

Happy birthday to me!

 

XOXO

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There is an “I” in Team

I always get angry at myself when I leave a shop or venue and feel flattered that whoever I was dealing with spoke directly to me. It annoys me that it happens so rarely that I feel as though the attendant in question deserves a medal of honour for their efforts. Even when in fact it really shouldn’t be an effort at all.

Even worse, if ever I have an encounter with a child where they don’t go tearing from the room at the sight of me, I feel the need to heartily congratulate the parents on a job well done and in some cases, adopt the child.

I get that it’s my issue and that only I can overcome it, but the fact is that there are very few situations, (other than those in my own apartment) where I don’t feel singled out as the weird-looking disabled one.

I can’t really write about it either. In a recent post, entitled “Please stop helping me without my permission. It really is a pain in the arse”, I wrote about why I have the right to be left to my own devices, and I was told I was just ungrateful.

It’s easy to say that. You’re not the one with the painful bruise on your backside!
This being said, I got a real shock on Monday during our team meeting. We were discussing possible venues to get together to celebrate Christmas when suddenly someone chimed in with “we’ve got to make sure it’s accessible for Nina.” For a second I didn’t even realise they were referring to me.

In the interests of full disclosure, I will admit that, at first, that was because I couldn’t really hear the conversation properly – thanks to the humidity I was having a “bad ear day”.

However, it was also because at that moment (despite being very aware that I was hearing impaired), I had somehow forgotten that disability and in particularly mobility were an issue for me. I don’t remember a time where this has happened before.

Later, when I was back at my desk, opening my daily can of Coke with a fork (that I keep in my desk drawer for just this purpose), it occurred to me that this is why I felt so “normal” here. Because I can do normal things my way and no one really cares.

To me, this is the actual meaning of inclusion.

XOXO

Why Every Girl needs a Walking Frame!

Nina selfie

Well, that was weird!

 

Today an old guy came up to me and told me that he hoped God would help me soon.

 

“With what?”  I thought to myself, “waiting for my taxi?”

 

Now, I had just finished work for the day (for a very respectable organization I might add), so i was conservatively dressed (i.e my devil worshippers uniform was at home) and I wasn’t doing anything except standing there with Cecily, my walking frame. 

 

I can only assume then that he meant that I needed help (and had the desire) to overcome my obvious disability.

 

I don’t.

It’s not the first time it has happened either. Once, when I was in a fruit and vegie shop with my mum another old guy (I seem to attract them) came up beside my wheelchair and told mum that one day God is going to come and get me out of that chair.  Shame, I was quite comfortable.

 

I know this is well intentioned, but it is also incredibly sad. It posits the notion that I am not happy as I am and, worse, that being like me is so bad that I need to be fixed. I assure you, this is not the case.

 

I am not going to sit here and write about how great my life is because if you need to hear it, you probably wouldn’t believe me anyway.

 

Besides, I am far too busy having an awesome life.

 

Sure, after I have spent half an hour looking for something that was never lost.  Or, I missed the end of the movie I’ve been waiting all year for because my hearing aid battery decided to die 15 minutes before the credits, I can find it (said disability) a tad irritating. But I wouldn’t be without it.

 

Hearing loss is great if you have a partner who snores. And ladies, how often have you been at a party enjoying a drink when someone comes around and offers you a delicious-looking canape which you can’t accept because there is nowhere to put your glass down and you’re already holding your bag.  I don’t have that problem. Cecily has a storage compartment.

 

And, it’s big enough to carry that jacket that you knew you should never have brought as well!

 

Suddenly a walking frame doesn’t look like such a bad accessory after all. Does it?

 

XOXO

 

Is This Thing On? The Time I wasn’t Funny

SCN_0005

This will come as a surprise to no-one. I am very sarcastic.

It’s how I deal with stress, failure/disappointment and ignorance.

Often it will get me into trouble, and sometimes it will cause me to fall flat on my face (figuratively speaking).
I once found myself in a situation where I was one of a lucky group who was being lectured to by a pompous ass.

If there is one thing I hate, it’s a pompous ass (unless it’s me), and this was a huge one. He had an opinion on everything from dealing with our indigenous population to marriage equality, and as I’m sure you can imagine his comments were not very complimentary.

Anyway, eventually he stopped trying to fix the world and began telling the room at large about how he often got to ride his Dad’s “Chopper.”

I was totally over him by that stage and, if I’m honest, would quite have liked some of that attention myself. So, I said in a very loud but still extremely innocent tone, “wow, I didn’t know your Dad had a helicopter!”

This turned to be a mistake because although it stopped his blabbering and made everyone laugh, it wasn’t for the reason I had hoped.

You see, I thought I was being humorous with irony. Mistakenly (on purpose) presuming the word “chopper” to mean helicopter instead of motorbike although it was clear this was his intention.

Of course, he corrected me and as he did so I realized that everyone was laughing at me, not with me.
He was still the hero while I was the ignorant one.
Damn it. That’s not how that was supposed to go…

I learnt 3 important life lessons that day:
1. Not every situation calls for point scoring.
2. Know your audience, and
3. Sometimes you should just keep your mouth shut!

XOXO

Please Stop “Helping” without my Permission: It Really is a Pain in the Arse

nina at door

 

I have written many a blog about how you should not help someone with a disability unless they ask you to. Further, if you offer someone your help and they say no, then leave it. However, I’m pretty sure that people think I only say this because:

A. I am too embarrassed to ask for/accept help,

B. Because I don’t realise that I can’t do something myself, or

C. Others believe they can make the task easier/quicker for me.

 

I have one thing to say to you. WRONG!!! 

 

 

Here is why:

The front door of my apartment building is really heavy and it is not an automatic door. Plus, every time I pass through it I have Cecily (my walking frame) with me.

 

As the majority of times I go through the door it is on my way to or from a taxi, I am usually on my own.

 

I am pretty weak, wobbly and I have no peripheral vision (I.e. I can only see things that I am looking directly or that are directly in front of me).  So, it has taken me a bit of trial and error but I have found a way to get through the door completely by myself in a way that is easy for me.

 

I simply open the door with my bottom and then lean my full weight against it while I bring Cecily through. It might look a bit awkward from the outside, but actually, it works really well and is very quick.

 

The other day I was doing just that when a “helpful” person who happened to be walking past decided that I needed help.

 

Can anyone see where I’m going with this?

She reached for the door handle and wrenched it back so that the door would open wider and I could get through more easily. Unfortunately, though, when she did this I already had my full weight leaning against the door. This meant that when the door flew backwards, so did I and I landed heavily on my arse.

 

 It bloody hurt!

 

Naturally the lady was mortified and apologised again and again and again before helping me up. I will admit, I was really pissed off and (of course) there were lots of spectators. But, because I knew she was only trying to help I couldn’t very well tell her off.

 

Now, she wasn’t to know this, but because of my vision impairment I didn’t see her coming towards me and I had no time to steady myself and this is why I fell. 

 

If she had asked first I could have explained that I was already leaning against the door and saved us both the embarrassment. It also might have been helpful for her to assume that I have possibly done this before.

 

 

 

 

It’s wrong to assume that someone needs help just because they have a disability. In order to maintain independence we, as disabled people, are able to find our own unique way of doing things. They may not be the way you would do them but they work for us and that is all that matters.

 

 

 

Having such low expectations of me because of my disability is not only offensive but it is also bigotry. In fact, it’s ableism. So, stop it!

 

Sometimes it’s really a pain in the arse…

XOXO 

Nonna Knows Best: Why I will be voting Yes to Marriage Equality

Nina and Glove
So, the other day Nonna asked me straight out, “Are you and Damion living together?” And when I gave her the answer, her reaction really surprised me…

 

Just for a bit of background, my Nonna is 95 years old and was born in the tiny Sicilian town of Francavilla where she lived until emigrating to Australia in 1959, with five children, to join her husband (my Nonno) who had been working here for several years

 

Like most of her generation she had an extremely conservative upbringing and was brought up as a devout catholic.

 

She has never worked outside the home, never voted, and speaks very little English

(especially if she knows you can speak Italian).  She does all the stereotypical things that Italian grandmothers do. She’s got an altar, she enjoys force-feeding and she is awesome at laying on the guilt.   But most of all, she believes in the old fashioned values. 

 

So, you can see why I wasn’t keen on telling her that I was “living in sin.” Plus, I was afraid of what she might do to Damion (remember she’s Sicilian). 

 

We are very close. I am even named after her and she has lived next door to me most of my life.  Half of me was scared that she would kill me but really, I just didn’t want her to be disappointed. 

 

I admitted that, yes, we were. Hastily adding how well Damion can cook and how big the portions he serves are. Then I waited for the rant that never came…

 

Instead she said, “Oh well, as long as you love and look after each other that’s okay”  

 

Now, my Nonna is sharp as a tack. I suspect she had worked out that we were living together long before I actually admitted it.  Which had given her lots of time to get used to the idea. But I still couldn’t believe how cool she was being about it.

 

I think this has a lot to do with Damion. She loves him, and for a boyfriend of mine that is no mean feat.

 

It might have something to do with the fuss he makes of her every time they meet. Or maybe it’s because when we went to the Perth Food and Wine Show he got Gary Meagan, (her favourite judge from MasterChef Australia), to autograph his magazine with the caption, “To Nonna, keep cooking love Gary”. Either way we are both still very much alive.

 

For those who don’t know, we in Australia are about to commence a postal vote on the subject of whether or not we are in favour of changing the Marriage Act to include marriage between two consenting adults instead of only between a man and a woman.

 

I was going to write a scathing post criticising those who intend to vote no on the grounds of religious belief.

 

I intended to point out that the book of Leviticus which is widely referenced as forbidding gay marriage, also forbids those with deformity, disability or mental illness (A.k.a. me) from coming to the altar.   Then, I was going to ask if anyone was willing to admit that they agreed with this too, and then hope to God that someone did so I could prove my point that things in the Bible are a little outdated and frankly, quite insane  (which as we have learnt is not allowed in church).

 

But it did seem a little ironic to me to be asking everyone to embracet love in whatever form it takes, with a post filled with anger, hatred and sarcasm.

 

So how about this? If my Nonna at the age of 95 can move and grow with the times then can you find it in your heart to do the same?

 

In these times when Donald Trump and Kim Jong Un are on the brink of nuclear world war, wouldn’t it be nice to have a bit more love in the world?

 

I had 12 years of catholic education and yet I will admit that my knowledge of the Bible is fairly limited. Although, I seem to remember that Jesus did say, “Love one another as I have loved you”.  There was no caveat that I know of where He says “unless the other has a different lifestyle to yours.”

 

Apologies if I appear to be bending Bible verses to suit my own agenda. I thought that’s what we were doing now

 

XOXO 

 

R is the Word

Earlier this year I was lucky enough to see a comedian perform at Fringe World (Perth International Fringe Festival). This particular guy is one of my favourites so I take the opportunity to see him whenever he is in town

 

As usual the show was hilarious (even Damion thought so), but this time around I didn’t enjoy it as much as I normally would.

 

It ended with a joke that used the word “retard”. But this is not what bothered me.

 

I know it’s meant to, some people find this word very offensive. But I just don’t. To me it’s just a word like any other.

 

Don’t get me wrong, I don’t go around using it. But, if someone else does, I don’t see the point in having them lynched. Am I doing disability wrong?

 

Anyway, the joke was such that the “R word” fitted in perfectly. That is, that the use of any other word would not have had as much of an impact and thus the joke would not have worked. As a writer I know  choice of words is important.

 

* for the record, the joke was not at the expense of people who are living with a disability

 

When he dropped the “R bomb” which was part of the build up to the punch line (or in this case the song), I noticed a few people (complete strangers) turned to me to gauge my reaction. It was as if they were looking to me to see whether or not it was okay to laugh. This is what burnt my crumpet!

 

As far as I could tell I was only person there with a visible disability and believe me, my disability is very visible.

 

That word (rightly or wrongly) is usually associated with people like me and I assume that is why I got the attention.

 

But, since when have I been the moral compass?

 

Like them, I was just there to enjoy the show. Not to be a spokesperson for the disability community.

 

I found the joke funny and so I was laughing, but others in my position may not have felt the same way. I felt as though I was being judged and I wasn’t even the one on stage.

 

We are all responsible for our own point of view. If you find something funny, then find it funny and if you don’t, then don’t.  But, it is up to you and what you believe in to make that choice. Not me.

If you’re not sure there are many places you can go to educate yourself on anything you want to know about disability.

 

Have the courage of your own conviction!

 

XOXO