Society

Published August 9, 2019 by helentastic67

Society

Today, my carer told me the most ridiculous thing in the world, I have possible ever heard. This particular carer who will be reading this when it goes live (Yes, I’m talking about you).

A young lady (it’s a loose term, but let’s go with it) cut her hand off to avoid having a job and work. I flicked a demanding look at this carer and gave her a “What the fuck” there’s the stupidest thing I’ve ever heard.

Apparently, the parents took her to hospital and they were able to re-attach it and with rehab she can use that hand.

I then suggested she could have cut off some fingers (not her whole hand) or some toes and she might qualify for a Disability and get a free pass from work. My carer and I laughed at this suggestion.

I then finished with, if she was one-handed, she would work, everyday for her God-Damned Life.

I’m sure that is enough to make on this point and for my older more mature followers who are still (I hope) reading at this point completely get that the real lesson here is how society is going to hell in a hand basket, if the younger generation think they need to avoid working by doing something so drastic.

Being the age, I am and despite having a brain injury, all of my life I have a good work history. Ok, ‘good’ might be exaggerating it a little, but I don’t know how to sit still and not contribute to the world somehow.

Happy Stupid Millennials

Published June 7, 2019 by helentastic67

Happy Stupid Millennial’s

Today, I was down in Collingwood where I rarely go these days and after I saw something that rather pissed me off. I got to do something that made me happy, then very quickly grumpy.

Firstly, I saw a young Millennial take a bite of something out of a paper bag, crumble up the bag and throw it behind her into the gutter.

To be perfectly clear, I would have handled this scenario the same way twenty years ago, or even fifteen years ago before my disability. This shit is like a red flag to a bull, to me. I motioned to her to stop. I told her to go back and pick it up and that there would be a bin around her somewhere and go put it in the bin. This makes me happy to growl at the ‘younger people’.

Then she completely ignored me, walked past me back into the shop she likely got it from, to get something else, that she didn’t do as I suggested, pissed me off even more.

Love or Hate, Hit Like

Published April 15, 2019 by helentastic67

Love or Hate, Hit Like

There will be some posts I write and you read when you won’t ‘Like’ at all what I have to say. You may not believe me even. You will be absolutely fair to want to HATE it.

However, you should still give me a ‘Like’ because I say it as I see it and then you can do something about what you have heard if you can and if you believe in it and think the world can be a better place for everyone.

These days I live in a rather wog area of Melbourne, they are mostly baby-boomers in age, their children having moved out, started their own families with more room in suburbs slightly further out.

On a rare occasion, there is a 50-somethiing still living with parents in this neighbourhood and it’s because on occasion the “child” is still in many ways a “child”.

It means they have intellectual challenges for those reading this post, don’t have to live with every day.

Wrong

Published April 12, 2019 by helentastic67

Wrong

There are brief and rare moments going FULL WRONG that makes all thing’s about disability anything but wrong.

I have a habit of weight-baring on my walking stick. I’m not the only one, it just goes to show I do need it, but there are times I use it rather forcefully to the great annoyance of some around me.

One lovely day, going off to our early December family Christmas lunch, which was somewhere nice. We girls can’t always get together on the actual day, so we do a nice lunch out.

It was on a Sunday, because it’s when we are all free.

Are you all aware I go off-grid on the weekend? I don’t go out, I don’t put on a bra or shoes. Yes, I have a shower, however, I don’t do PERSON.

So, going to Hellenic Republic in Kew, George Collobini’s great Greek restaurant. Definitely, a bit expensive, but special so it’s the way to go and it’s got my name on it.

But Sunday, HARD to do PERSON. So, walking stick was riding that thing, have hard and noisy.

Mum growled at me ‘Do you have to be so noisy?’

To which I replied ‘I’m sorry, if only I could live without it!’

I’m sure I also told her to ‘Go ye forth and multiply’, but in other words, yes my favourite ones. Starting with my favourite F word ending in “off” and mum laughed.

So proud of my relationship with my mum at times like this.

I’m More Than Just a Stroke

Published March 29, 2019 by helentastic67

More than just my stroke

I’m More Than Just a Stroke

There is so much judgement to having a stroke. Normally I get it by just a look sent my way from someone in passing. I usually notice it and go for the wry smile anyway. I prefer to kill with kindness.

The look

Sometimes others witness this judgement and they take care of it too. To be clear my mum personalises every single slight that happens to me. So, she reacts like it’s all happening to her. She can’t help herself.

Mum

But the carer while arranging her social engagements for the Sunday afternoon, she told her friend she had me in the morning. She described me as and in the context of “Helen’s forty-five and had a stroke.” Something about the tone she used, I responded with a “Yes?” with the end of the word lifted. Raised my eyebrows some. She sniggered a little and seemed reluctant to share.

Sniggering 1

Her friend’s judgement was swift “forty-five and had a stroke? That’s young for a stroke.”

I reminded her I’d been in my late thirties, but she informed me that he had put him (her friend) in his place, that I hadn’t been a drinker or a smoker.

Drinker and Smoker 1

Big love her way. Bless her cotton socks.

But I reassured her, I’m used to that level of judgement from complete strangers. I told her it was fine, I wasn’t even offended. I had a fairly thick skin in some ways these days and I will growl a questioning grumpy “What?” at someone who gives me a look of disrespect or I will give them a “FUCK YOU” if needed.

Fuck you

So, there are times, it’s just not worth it to need to advocate every single time someone disrespects me or I wouldn’t leave the house or answer the phone or deal with family. I would just stay home and wait to die.

Waiting to die

I do of course reward and thank people who take the time to simply step out of my way, so I can pass and I don’t make a big thing of it, so I incline my head slightly and give them a quiet thank you in their direction.

Thank you

Hostage

Published December 24, 2018 by helentastic67

Hostage

There is a reference I often make to what it’s like having a disability and I’m certain people who have more severe disabilities than I, feel this way.

Disability Hostage

Now, I also premise this by saying I’m pretty sure my family don’t read my blog. So I’m good to go. I can write what I like.

Let me just say, the breakdown of my family is this. My parents are both still amongst the living (not complaining), they divorced when I was about twenty-five and I knew it was coming for the ten years before that. I have an older sister by two years, who I see once or twice a year (she lives closest), I have one surviving younger sister (16 years younger) who lives with my mum. My parents both live three and half hours drive away, my father, I see at Christmas when I’m up that way. He won’t travel to Melbourne to see me and if in town, he won’t bother to visit either. He has not seen most of the places I’ve lived, in the last twenty years. I think he’s seen one, he doesn’t call me, I call him.

Family

I speak to my mum twice a week and while that’s five times less than it used to be, we got along much better than we used to. Mum comes down every so often for serious appointments and such.

Ah, background done. Now to my point!

During smiley holidays and such (Christmas, Easter, what-not) I will go to spend time with family. It’s that or stay at home alone. So, I go and then I lose my independence immediately. I have my mum’s bedroom and I hibernate. I want a shower I have to negotiate when someone is prepared to assist me if I go outside, I generally don’t step off the verandah as the last time I went outside my mum called to me: “If you go for a walk be careful by the water tank there’s a snake over there!” I promptly went back inside to relative safety. Motivation to go anywhere is hard to draw on.

Snakes

To go anywhere requires someone to drive me either twenty minutes to a decent meeting place with medicine(coffee) or an hour where I can arrange to meet friends who might visit family once a year at Christmas time. Any of these adventures requires money I don’t have and logistical nightmares of being able to get home again when I need it.

Drive for coffee

I put my things in the fridge and when I go to get them out again, two other people have moved them to get to other things and I might be standing in just the wrong spot/angle and my things are in my blind spot and I can’t see the forest for the trees.

Fridge

The environment is a very comfortable space for the two that live there and throwing me into the mix I feel terrible to put someone out to be able to join in. Everything I can do to contribute, someone has to move things to prepare for me and I feel more of a hindrance than an adult. So, I hibernate.

Hibernate

Oh yeah, where I spend Christmas, I’m also socially isolated by other means, no mobile reception, I divert my phone and if they can’t remember their wi-fi password I’m screwed. So, hostage. Like I said.

Christmas Hostage

Today’s Lunch – 10th October 2018

Published October 10, 2018 by helentastic67

Todays Lunch

Today’s Lunch

Good Mental Health Day

People often think people with disabilities don’t have a sense of humour, they would be wrong. Made the best disability joke yesterday and only two people were there to witness it. I was at Ross House where the self-advocacy group, I go to is located. All the resident organisations are not for profit (NGO’s) The lift is old and small and slow, there are stairs. I’ve never used them. There are four floors and with my young carer who normally escorts me shopping and cooking on Fridays in the lift and a complete stranger, the lift seemed to stop every floor on the way down yet there was no one there to get on the lift. I muttered to my carer as to why the lift kept stopping without anyone joining us? “Someone probably pressed the button and they got sick of waiting and took the stairs but, I can guarantee you it’s not someone in a wheelchair!” Yeah, I went there.

Disability humour

Wednesday has started a bit differently. No water in the whole apartment complex until after 1pm so lunch will be after my only appointment and I think it’s about time I put a myth to rest, I wrote in an earlier post how I dislike the “Like”. It may have been taken out of context. I love the “Like” I have only two ways to tell if people read or like my posts. I know it sounds needy, however, hit me with a “Like and comment” I need to be validated too. Oh, yeah! I just hit 200 followers. I know, it’s not that many to some of you. I still get excited by every single one. I go check out what you have to write about and hit you up with a “Like” so you know I dropped by. If you write about something I’m interested in or feel I can support you I will follow you also.

Like

Eventually I got out on Hellonwheels to get to my only appointment, which was to get stabbed, that being acupuncture. In true Melbourne style it’s spring. So, t-shirt weather if you are lucky to be in the sun but not catching the wind. I couldn’t wait to get home to put on some warmer clothes. I stopped to collect a little cannoli and a French donut (it’s got custard in it) and stop at the post office.

French donut

No photos today. But I can show you some cute toys I bought Mika last Friday. You have already shown more interest in her new toys by reading this. Except, well I think I don’t need to describe what obviously happened here.

Mika toys

Need more coffee, much more coffee! Medicine!

Coffee

Land of Funding

Published October 8, 2018 by helentastic67

Land of funding

Land of Funding

People may wonder how I’ve had my disability for 12 years, yet have not qualified for funding before the NDIS kicked in a few years ago.

NDIS is coming

Well, if I were to do it justice, I could write a book or this blog would be about nothing but ‘how the system failed me.’ But however, I don’t want to issue you all with warnings to go hide your razor blades or pills or any other dangerous self-harming implements’ (in America I guess that includes guns!)

Self Harm

So, allow me to do an abridged version. Ok, I’ll try.

If I was diagnosed early, say under twenty years of age, bingo. There would be FUNDING.

Under 20

If I was a mangled ‘thing’ in a nursing home under forty years old. BIG FUNDING.

Under 40

If I’d been in a car accident, even if I was off my face on drugs and smashed (drunk), I’d have TAC funding.

Car accident

That and all of the above means, I might not even need carers, I might be able to drive still, but I would have so much money I could get new computers, smart phones, iPads, Playstations (is that the gadget these days?) every other year and no one would stop me.

new equipment

However, I had to do it the hard way. When do I not?

After my treatment and the ‘fall-out’ that gave me my disability. Maybe because I was maintaining life independently and didn’t spend time as an inpatient in rehab, learning how to walk and talk (not complaining. Just stating facts) I started ringing around to see how this world I now had to navigate worked.

Navigate the new world 1

I rang DHS (Department of Human Services) they do Case Management, but are so overrun, they outsourced to other agencies and businesses that they then find.

DHS

I was given two names that I followed up. The first sounded reliable, but had a huge waiting list. I rode them like a kid on a bicycle. I rang so much staff turned over and eventually I was given short-term Case Management to achieve some goals.

I’m sure I mentioned how GOAL AND OUTCOME DRIVEN the land of funding is.

Goal and Outcome

Because apparently, anything less is not worth doing. Please not sarcasm.

I digress. I have dealt with two different Case Management companies (they say they are organisations but they work on a business model “to make money”) so they are companies.

Make money

The first I had an Advocate and made a complaint to the Disability Commissioners office. Case Management companies literally can sign you up, give you the ‘YES, YES, YES’ go back to the office and never speak to you again.

Yes

Both companies always said “YES, YES, YES” we will do an application for an ISP (Individual Support Package) and it never fucking happened. One company gave me the excuse that they are rarely fucked. It’s not good enough reason not to do one though is it?

I really could go on and on about this topic and Helen’s lack thereof, but it is likely almost enough now.

I guess also that the system failed me because while there were whispers of the impending upcoming NDIS, everyone thought it would solve my problems. It was painted as a light at the end of a very dark tunnel. So, everyone let me wait.

Problem solver

So, I’ve struggled, I’ve had to move house four times since my diagnosis, not always because next was outrageously high or lack of decent housemates not wanting to deal with shitty, stressful housemate drama anymore or even that I’ve used every dollar I had on renting and much from my father and lastly is the constant reminder from others, who don’t have any money issues or funding issues, trying to give me their opinions on the thing, the thing, the thing and the thing, when they really know not a God damn thing about it.

Dad money

Advocacy

Published October 5, 2018 by helentastic67

Advocacy

Someone gave me the most brilliant analogy for advocacy and the success felt when achieving anything major.

Advocacy success

For example, I’m currently wearing my new shoes and have been for about a month. The shoes are referred to as Custom, not custom by NDIS.

New Shoes

They weren’t made by hand to specifically fit my feet, but you get fitted in the shop and there are layers in the bottom of the shoe that come out to make room for my AFO (Ankle, Foot Orthotics) and the overall effect is, I can walk better, my AFO does what it’s designed to do, my hips won’t be uneven and the most important thing is, I won’t need a knee replacement one day, because I have a habit of hyper-extending my knee.

AFO 1

The shoes actually come from the States (as in America) and are the most expensive shoes I’ve ever owned. They are not yet PAID FOR.

Expensive shoes

I know, sounds ridiculous that I’m currently wearing $350.00 pair of shoes that weren’t paid for by the NDIA (National Disability Insurance Agency – who manage and deliver the scheme)

NDIS

So, the analogy I was given (no, I didn’t forget) was that Advocacy is like trying to climb Mount Everest. Then her advice was to stay at Base Camp. I suggested that was likely wise, since the air is thicker there.

Mt Everest

When Disability Becomes Embarrassing – Part 4

Published September 28, 2018 by helentastic67

When disability becomes embarrassing 4

When Disability Becomes Embarrassing – Part 4

Fred Gets Taught a Lesson

The final day of the conference everyone was tired, but content they had gone, conquered and achieved what they had gone there to do.

End of conference

I came across Fred and in a casual setting he approached me to apologise for the previous night at the dinner and throwing me under the bus in front of everyone.

Fred apologizes

I told him “It’s OK, because I had been about to tell him to go outside and call all his friends and family and loved ones and tell them how much he loved them!” because I was going to kill him.

Im going to kill you

He seemed to sober immediately and to confirm he wouldn’t do it again. I told him it would be OK because I could always claim brain injury to “get off”.

Blame brain injury