The Tale of Hugh Jass-Hat

 

 

I take a lot of taxis and overall I think the myth of the inept and rude taxi driver is quite unfounded.

 However there is an exception to every rule.

 The other day I was in a cab with Hugh Jass-Hat (not his real name).

 I had met Hugh before but on those occasions he had picked me up from Mum and Dad’s. I can only assume that this is why he went there (despite being given my new address) to pick me up. But why he practically accused Dad of holding me hostage is a mystery. Perhaps he was just having a bad day.

 Possibly deciding that the hostage situation was beyond his control, he tried my new address and SURPRISE, there I was.  Phew!

 And then the fun really began…

 “Are you still with that boyfriend I dropped you off to last time?” He asked.

 Now, I am no Elizabeth Taylor.  My romantic history is not that extensive, but I couldn’t even remember when “last time” was.

 Not that it mattered though, because, before I had a chance to answer he followed the question with, “You didn’t have sex with him did you? Coz disabled people having sex is disgusting.”

 I sat there in silence. When had I moved to the planet of the apes?

 Then for some reason he began telling me about a documentary he had recently seen. It was about this chapel in the Vatican that had these really old paintings but he couldn’t remember the name of it.

 “The Sistine Chapel” I said. He ignored me and went on. But still the name eluded him.

 “The Sistine Chapel” I said again and was again ignored.

 After the third time Hugh started to get frustrated. He turned to me and said “You’re saying it wrong, it’s Sixteen Chapel. Working for a Catholic organisation you should know that.” I had to stop myself from laughing.

 “Sorry Hugh” I thought to myself. “It must be all that  disabled sex I keep having, it’s scrambled my brain!”

 ***Disclaimer*** The names of the participants in this story may have been changed to protect the ignorant.

 

XOXO

5 Tips for Dating Someone Who is Divinely Disabled

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Last week I shared with you my top tips for dating if you are disabled. Well, somehow that post was the most successful post in “Inner musings of a funny looking kid” history.

 

So, because now I have tickets on myself; here are my top 5 tips for dating someone who is divinely disabled.

 

  1. Keep a sense of humour:

Very early on in our relationship, I went to a partner’s house for dinner. As we were preparing to eat he went to the cupboard to get the plates. I was twiddling my thumbs and so I asked him “Would you like a hand?” Now this was a polite and fair question except that he didn’t (and I assume still doesn’t) have arms. Without batting an eyelid, he looked at me (straight-faced) and said, “Actually I’d like two.” Then proceeded to laugh at the embarrassment on my face. Faux pas will happen and, having lived with our bodies for a long time, a person with a disability can usually tell the difference between a Freudian slip or innocent mistake and a deliberate attempt to offend. And, if we like you, we’ll usually let it slide.

 

Having said that though, that doesn’t mean that your date is automatically up for being the butt of your jokes. Take a cue from them.  If they find it funny, then chances are that you can too.

 

  1. There is a difference between chivalry and being patronising:

As a general rule; if you’ve seen Gene Kelly, Fred Astaire or Clarke Gable do it in a movie, i.e. Hold a door open, push a chair in or pick up the cheque, this is chivalry. Anything else is patronising unless they ask you for the help. As a matter of fact, some will say that the above gestures are also patronising but I don’t see anything wrong with the occasional display of gentlemanliness. It’s one of my favourite things about Damion.

 

A lot of disabled people are very independent and others have a carer to help them when they need it. We are out with you because we want a partner, not because the carer has the night off!

 

  1. Be prepared:

Dating us is a lot like being a Boy Scout. You need to always be prepared.   I don’t mean that you should bring a first aid kit to every date, although don’t be surprised if we need one at some point (see tips 1 and 2 for how to handle this), but rather that you need to consider the venue or activity you are planning beforehand. For example, if your date is in a wheelchair then places without stairs are a good idea and rock climbing is probably not. This will get easier the longer you know each other and if in doubt, ask.

 

I once went on a date with a guy who was unsure as to where we should go. When I suggested the Roof Top Movies, (a cinema on the top floor of an open-air car park), he declined because he didn’t want to wear a harness. I don’t know what the hell he thought roof top movies were.

 

Also, if you don’t have a disability you might not have experienced the stares that you will get when we’re out together. It is not our fault; some people are just rude.  But chances are it is always going to happen. If it’s too much for you that’s ok but please tell us before it becomes an issue.

 

  1. Do ask and do tell:

If you are curious, it is ok to ask. If you both plan on a long-term relationship, then you will more than likely learn the answers to your questions eventually though.  So use your common sense as to what is appropriate to ask at which stage of the game and remember, your date is not your research project.

 

Yes, love is blind but if your love actually is blind (for example) it is a good idea to mention this to your family/friends before you introduce us to them.  This will avoid any awkwardness during the introduction and allow everyone to make preparations that will ensure everyone is as comfortable as possible. It also gives them the chance to ask questions or air any misgivings they may have out of your love’s earshot.

This is not patronizing, its practical.

 

  1. A tip from Damion:

Keep an open mind. People with a disability may look/act different to “normal” people but they will more often than not prove to be more loving and understanding than others. Which makes for a deeper and more fulfilling relationship.

 

For the record: I did not put him up to that.

 

Happy dating!

 

XOXO

5 Dating Tips for the Divinely Disabled

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Like millions of women the world over, I got my fair share of advice from others on what kind of man I needed when I finally started dating. I was told he needed to be as clever as me or I’ll get bored, a dormouse so that he didn’t mind that I did all the talking and I was even told that I needed a fella who worshipped me as much as my old dog Napoleon did. But perhaps the most unhelpful suggestion I got was that I needed, above all else, a man with a disability. coz you know, we’re in the same league.

Damion does not have a disability, but I don’t hold that against him. He is in fact the only person I’ve been out with (more than once) who does not, and he’s awesome! The only other “serious relationship” (if you could call it that) that I have ever had was with a gorgeous guy that did happen to have one. The relationship lasted for less than a year but I suspect that that had more to do with my incredibly low self-esteem, ( resulting in my constant need for reassurance) not our disabilities. Constant crying is never an attractive quality for anyone.  It is almost as unattractive as desperation.

 

On a side note, I mention the disability status of both of these men purely to make the point that this is not the deciding factor in my relationships. You would be surprised how many people ask me “what is his disability?” if ever I mention Damion. I will usually ignore the ignorance but if I do answer, you’d think I had said I was dating a 100-year-old (nothing wrong it that) and not someone who’s able-bodied. Such is the shocked reaction I encounter.

 

I have now seen both sides of the coin. That is, I have been the disabled dater and the disabled datee. When one or more of you have a disability, there are extra things to be considered, such as anything from; access to venues and how you’re going to get there, to how you’re going to shower at your partner’s house without your shower chair. Luckily though, with this being 2017, there is usually a way around everything if you want there to be.

 

I am no expert but since when has that ever stopped me? Here are my top tips for dating if you are divinely disabled:

 

1. Don’t hide your disability –  be upfront, honest and proud of your disability. If it’s too confronting to deal with on the first date, it’s unlikely to be any less so if you spring it on them in 2-dates-time. This is especially important if you are dating online. Trust me, the look of shock/disappointment that comes when your date sees that you are more disabled than they thought is not something that you really want to see.

 

I once went out with a guy who gave me that look. so, not wanting to seem any more disabled (as it was obviously an issue) I decided not to take my walking frame. This was a mistake, what I should have done was not go through with the date. Instead I wobbled around and eventually had to hold onto him for support which made us both uncomfortable. Needless to say, there was no second date.

2. You don’t have to take second best.

I had thought that because I am not perfect and my disability carries a lot of baggage, I should take anything that is offered to me and be grateful. That means  putting up with being made fun of,  or taking part in activities that I was not comfortable with, purely because I was afraid that nothing else would come along. Wrong! Sure, it is a possibility, but if you don’t find someone else straight away, at least you won’t have to shave your legs every day.

 

Similarly remember that you are not a curio. There is a myth out there that disability equals desperate and to use a phrase I heard a lady on BBC program “The Undatables” use; we are not here for a fascination fuck!

 

3. On the first date go somewhere you know.

It’s not always your choice, but if you can go somewhere you know well, then do. That way you can be familiar with where the easiest access points are and where you can sit down if you need to. Another perk to knowing the place is that, where applicable, you can peruse the menu beforehand. This avoids the awkwardness of having to ask your date to read it for you if you can’t. Although, their reaction to this request can be a good indicator as to how comfortable they are with your disability. Damion read the menu out for me on our first date.

4. Be happy with yourself first.

I know that everyone says this and it’s easier said than done, but it’s true. Unfortunately, unless your partner is as lacking in the self-esteem department as you (not recommended) or they have the patience of a saint, you won’t get the reassurance you’re after. You’ll get dumped! Try counselling and/or writing to overcome this. It worked for me

5, You gotta be in it to win it – put yourself out there.

This is not a movie, it’s real life. So, sadly, the person you’re looking for wont just appear on your doorstep and declare undying love for you. It’s frightening and yes, your disability might expose you to more rejection than you hope, but it’s not all doom and gloom.

 

If you’re shy, internet dating is a good option and you can do it in your pyjamas. It’s also good when, like me, your disability makes it difficult to socialise in the traditional way. You do have to go out in the big wide world eventually though.

 

There are lots of different sites out there but I had success with disabledsingles.com.au and more recently with Zoosk (it’s were I met Damion). There are people from all walks of life everywhere, so keep an open mind and just go with what your comfortable with.

 

Good luck and happy dating!

 

XOXO

Abseil 2.0: A New Hope

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The abseil for the Perth Children’s Hospital Foundation (formerly known as Princess Margaret Hospital Foundation) is on again. 160 metres (40 stories) down the QV1 building in Perth’s CBD. Just me, a safety rope and the relief that my vision impairment stops me from seeing what I’m really doing.

 

I must confess, I almost opted out this year.  Last year’s effort didn’t go the way I hoped, resulting in me spending the majority of the descent perched on someone’s lap. Don’t get me wrong, it was a very nice lap, but I wanted to use my own legs.  I felt like I had failed not only myself but everyone who had contributed to my fundraising. Would anyone be willing to take another chance? And what if I become one of those friends that people avoid because they’re always nagging you to support their cause?

 

But then I realised, it’s not actually about how I did it but the fact that I did it at all. And the fact that I did it is largely due to being cared for at PMH.

 

During my childhood, I spent a lot of time in that hospital and barely a year went by without having some surgery or other. My greatest claim to fame (as far as PMH is concerned) is that I have been a patient of every department except oncology.  Of course, at the time I hated the place as i came to associate it with misery.  But now as i wobble around, type this blog or do anything really, I realise that I can do these things largely due to the “mean” doctors and nurses who treated me there.

 

Well dear reader, i have become one of those friends, and I ask you to help me to raise as much money as possible for the foundation. You may not have been the frequent flyer that I was but we’ve all been touched by PMH at some point either personally or vicariously.

 

Last year with your help I raised $1,680 which went towards the purchase (at a cost of $1.7 million) of a super-duper machine (sorry to be so technical) that assists in the diagnosis and treatment of potentially thousands of kiddies. The funds for this year will go to the project of greatest need and will be decided on later in the year.

Donations can be made at: https://abseil2017.everydayhero.com/au/nina-marie-butler-abseil-for-pmh-foundation 

 

 

 

I often find myself thanking my lucky stars that I was born in Perth in 1984. A place where a disability is not seen as a curse as in some countries and at a point in history where I have access to technology that means I can live a relatively “normal” life.

 

In the unlikely event that I ever compete in Miss Universe and I get to answer the question “What is your greatest wish” I’d say “Stuff world peace! Just give every child the same opportunities as I’ve had.”

 

Might as well, it’s not like I’d win. I’m not built for bikinis.

 

XOXO

 

PS: stay tuned for photos and details of this year’s attempt coming soon.

Dead Budgies Don’t Tweet!

2016 saw the loss of many great icons. It also saw the loss of my Budgie Albus. I didn’t know him for very long, two weeks to be exact. Yet in that short time he taught me a very valuable lesson. I am not cut out for bird ownership!

 

I had said that I wanted a pet (preferably a bird) for my birthday and so that night (the 16th of December in case you were wondering) my brother and    his girlfriend Amy wheeled in an ornate cage that was home to my new pet. I was delighted. Albus not so much.

 

From the second we met he was hell-bent on escape and in the days that followed he flew at me every time I popped over for a chat. Now, I’m not that experienced in budgie husbandry (or should that be wifery?) but I suspected this was not a good sign.

 

I was very disappointed by this and despite being sure that I could care for a bird myself, the fact that i couldn’t open the cage (and was too afraid to do so anyway) meant that my birthday present was just more work for Damion. Not what I had intended.

 

i have no doubt that Albus was very well cared for and (as long as i didn’t go anywhere near him)he was happy. But never-the-less, after only entering my life two weeks earlier, Albus quite literally dropped of the perch. I did wonder  if he’d taken his own life.

 

After the demise of Albus I decided that a ceramic bird was more my speed. It must have looked real too because upon spotting the Cockie in the cage I really got a telling off from a visitor one day. Apparently the cage, while palatial for a budgie was far too small for a cockatoo and the fact that i had not thought to bring it inside in what was 40 degree heat was just irresponsible. Thank goodness he didn’t go close enough to the cage to spot there was no food or water there either or he probably would have called the RSPCA!

 

The bird, called liberty (because it’s a statue(, has remained with me for almost a month now and has remained completely unscathed. This has given me the confidence to expand my menagerie further.

 

As I live in a one bedroom apartment and when I return to work I shall hardly be home. I have decided on a pet rock, It is to be christened Hudson. Rock Hudson.

 

RIP Albus.

 

XOXO

This is why I don’t write fiction

Almost 2 years ago I did a creative writing course. It was the first course I had done since losing my eyesight and I wasn’t sure I would be able to manage it. Luckily the college was able to arrange an absolutely terrific teacher who not only photocopied all the course materials to larger print for me, but who also allowed me to smuggle Dad in for extra assistance. To date I think this is still one of the most enjoyable things that we have done together.

 

We all had to provide an excerpt of what we were working on to the class for critique. Everyone else had a novel in the works (some of which I am still eagerly anticipating) but I, preferring the more instant gratification that comes from blogging did not. I could have submitted a blog of course, yet for some reason I decided to give fiction a go.

The result is below.

 

THE PROBLEMS OF DR ANDERSON

Sweat poured from his brow, the beads so large he would soon be sitting in his own private lake. He moved to the window in search of relief, but not even a howling gale could’ve stemmed the flow. Yes, it was hot and the air-conditioning unit was out of order, but this wasn’t why he was sweating.

He began to pace, glancing every few seconds at the entrance to the ward . The moments dragged by; tick, tick, tick. Any minute now he’d know. His fate would be sealed.

“What if she dies?” he thought to himself. “Oh God, what if she lives?”

Dr Napoleon James Anderson was a smart man, a rocket scientist with a doctorate in physics. But there was no point in asking him to change a light bulb or hang a painting, it would just never happen. Alas, if only Janet had realized this before the wedding.

 Not that it would have made any difference, with his blue eyes and chiselled jaw; she still would have married him.

 Lost in thought, Napoleon did not notice the ward door finally open. As he looked up, a smartly dressed young woman wearing a stethoscope around her neck and carrying what looked like a medical chart  came striding purposefully  toward him. It was then an unexpected thought arose: “She’s cute; I wonder what she’s doing later.” He shook his head vigorously, now was not the time.

“Mister Anderson I presume?” She said, a hint of a smirk crossing her lips.

Pffft, he thought. “The Matrix, How original.” Doctor actually,” he said, getting to his feet, a note of irritation in his voice. “How’s Janet, is she dead yet?”

Caught off guard at Napoleon’s apparent lack of sensitivity, the woman continued.

“My apologies, Doctor Anderson” she said, before regaining her composure. “Regarding your wife, I have some good news and some bad news. The good news is, Janet will live.”

Napoleon tried to appear relieved . “And the bad news?”

“Well Sir, ahem, Doctor…”

Perhaps she wasn’t so cute after all .

“Your wife…”

 Bang! The ward door flung open. There stood Janet , closely followed by two confused and harassed-looking nurses. Her dressing gown hung  open, revealing her once luminous white skin that was now a light shade of green. Her eyes were flaming and her nostrils were flaring. She looked like a woman possessed. . 

 Napoleon gulped, was it too late to run?

 “Hi Janet,” he said, inching toward the door. “You’re looking well”. “You’ll have to excuse me, I was just on my way out”.

 

I think I should stick to what I know, don’t you?

 

 

xoxo

 

 

Born to be blogging

 

 

Last night I realised that I may have (if you’ll be excuse my arrogance) been born to blog.  In fact, I may have been blogging since before blogging was actually a thing.  Nothing would amuse me more than starting a brand-new diary (usually the day after my birthday or Christmas), writing pages and pages of my inner most thoughts and then forcing people (usually my older cousins) to read my ramblings, whilst I sat cross-legged on the floor in front of them, waiting to get a laugh. The writing was never really that meaningful, usually just my tween aged fantasies of marrying the boy I loved that week and general titbits about how awesome I thought I was (obviously, I used to write fiction). I would always write in the style of someone who expected their work to be read by others. 

 

I was all about quality not quantity at that time though because although I would write lengthy entries, there would only be two or three in the book before I would get bored and leave the rest blank.

 

 

There was one person I couldn’t bear to read my diary though. My brother. To be honest I don’t think he really cared what was inside the diary but the fact that I was so desperate for him not to get his hands on it meant that he did everything he could to try and get at it just to tease me. Ironically, I don’t think that he reads my blog. I think that forbidden fruit must taste better.

 

 

To the best of my knowledge all of these diaries have long since been thrown out.  Thank goodness. I suspect they would be nothing short of cringe worthy 

 

 

My blog has a slightly larger audience than the one my diaries had, and surprisingly people come to them willingly, and from all around the world.   People give me feedback, share their experiences and teach me things I didn’t know.  I have had people laugh with me, cry with me and give me advice. People share my blog and recommend it to others and for that I am immensely grateful. It’s been almost 3 years and almost ninety posts (I now work on quantity rather than quality). But I’m not done yet. 2016 was a busy year that saw a number of major changes in my life.

 

Thank you to all who have supported me and my blog since its inception. My aim was to highlight disability issues but I have also gained a confidence through blogging that I never expected.

 

In 2017 I intend to check a few more things off my bucket list and as usual jump on my soap box and rant.  I hope you will come along with me!

 

 

XOXO 

 Apologies for the formatting. It’s WordPress not me. Although I did say I now go for quantity rather than  quality!