Self Advocacy

All posts tagged Self Advocacy

Self Advocacy

Published March 11, 2020 by helentastic67

Self Advocacy

So, help me God! There are some days Advocacy is needed for everything and the simplest things. Tuesday, I met with my Service Co-ordinator (in old terms my Case Manager) and I mentions to her again, I’m still yet to be sent hard copies of any of my invoices. I seem to have this conversation EVERY SINGLE TIME I SEE MY SERVICE CO-ORDINATOR.

Nothing changes, to be clear I’m not doing my part wrong. I’m not using poor communication/negotiation skills. It’s just people not wanting to do their jobs or not wanting to be monitored or held accountable.

So, I get an email with my invoices every month, which I can’t print, so I’ve asked for hard copies. I also now have to argue and debate it’s NOT EASIER on the computer screen. Because with my eyesight I can’t chop and change between two spreadsheets on my laptop to make sure my records of who turned up on what date for how long is the same as what I’ve been billed for. It’s no longer my money, but I still wanting to know the $70,000 is about making my life better, as it’s designed and not lining the pockets of companies and people who want to work smarter not harder.

It’s my opinion, the cost of printing my invoices and posting them out to me should at their expense, because they can absorb the costs.

They are not doing it for everyone, but I can impress upon people (other clients) they can insist on it. So, rehashing this every few months seems I mention it to my Service Co-ordinator, she then calls my Service Providers, who call me to argue and debate out of providing a service and be held accountable.

I’m pushing back.

And then, after a short tram ride home, after my one appointment today, I work my way to the door of the tram an while I stay on my walking stick is between my teeth and holding on the hand rail on the right hand side of the door I go to step down.

My tram line does not as yet have the accessible tram stops, so it’s a big step up or down to the road. I’m encountered by a hand reaching up, just near mine and a leg stepping up. I don’t know where she thought she was going since I couldn’t get down without the hand rail. She didn’t even look up to see me. She said “Sorry” but she obviously didn’t mean it, because you would think (crazy me and my common sense, right) that she would rethink what she was doing and stop and wait. No! She continued to attempt to step up. She was a teenager in her school uniform and twice as wide as me. (Not fat shaming, but suggesting she thought to use her size to intimidate me)

Do I sound like someone to dare try to intimidate? You bet. I put her in her place. Around the walking stick strap between my teeth I said to her.

“Are you seriously going to still try to get on this tram while I’m trying to get down?” and she waited for the split second it took me to get down. I just don’t understand how I need to tell someone they should wait for people to get off a tram, train, bus (This argument works for any form of public transport or transport even). Wait until people get off before you attempt to get on. Why is it so hard?

If only, then is their more room for you to get on. No?

FFS

Today’s Lunch – 11th September 2019

Published September 11, 2019 by helentastic67

Today’s Lunch

Good Mental Health Day

Another mid-week post, it’s not getting old. Good food, better medicine. My favourite cafe never gets old. What gets old is doing adult so much it’s squeezing time to eat and write into oblivion. Note, the less lunch my lunch resembles and more like afternoon tea.

Yesterday, was at the self-advocacy group I attend. Picked up some comedy tickets for next March! Yippy! Stay tuned for that!

Here is a photo of what’s referred to as the witches’ hat in the Arts Precinct in Melbourne.

Note the beautiful spring day in Melbourne.

Today’s offering is Carrot cake and medicine (One of my serves of vegetables every day!) and the pretty strawberry daiquiri my lovely assistant is having.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

And blessed Young John, my taxi driver has returned from Greece, have so missed him.

 

Self Advocacy Never Done

Published June 3, 2019 by helentastic67

Self Advocacy Never Done

I’ve often said there is no holiday from self-advocacy and you might not have any idea what this means, so allow me.

Wednesday arrives and so does my carer and the phone rings, the agency calls and I’m happy to hear from her because we have a decent friendly repour. Until she tells me she needs to fill my next shift, because the carer rang in sick, it’s 10am and my next shift starts at 12.30pm (because they won’t cover taxi’s) my carer now helps me efficiently get from home to my favourite Café to my Chiropractors, then back to her home at the location I get stabbed (acupuncture) by 3pm.

I used to do this all without the assistance of a carer, but because my chiro relocated, I can’t do it all efficiently in a day via Young John, my scooter and a tram. Then I get some steps done walking here.

So, agency calls and she is letting me know they might not have someone, my morning carer in the background is trying to see if she can be the silver bullet to solve the problem.

We have a brief discussion about the availability of my regulars. Not the silver bullet. Some only work certain days, others study also, others again have a full day and would end up working ten hours, which is NOT ALLOWED. (not complaining)

So, I’m asked ‘which carer wouldn’t I like?’ I give her a ‘Don’t be like that!’ a little tartly and she says ‘Remember when we started, I sent “XYZ” (not her real name) and you loved her. Here’s the advocacy part. SHUDDUP I got there. It was all relevant.

“No! No, I didn’t, she was the first carer you sent to me and I was being professional and diplomatic, but I could tell there was a little something ‘off’ about her.

That first day she made a point for me to know she was a ‘white aboriginal’ woman and she loved to brag about her wealthy private clients, that had indoor swimming pools and a lift. “Hey, I have a fucking lift too, now I’m doing apartment living.” She came to my new home after Christmas because they were short staffed and she looked down her nose at my home, saying “she couldn’t do it!” Then she stole my letter opener and Seinhausen headphones.

So, No! No! I don’t want her back again. I was asked if I would be OK to have a male carer? Of course, they will not be needing to see me naked. So, fine. They found someone for me and that little hurdle is conquered, but it’s pretty much how every single day goes. Either it’s the agencies, my property manager, my carers or even my family, or complete strangers in the street.

It’s NON-STOP, it never ends.

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

 

Making Things Count

Published December 7, 2018 by helentastic67

Making it Count

Making Things Count

It may or may not surprise people to know that I have done a Leadership program, which I completed back in 2012? Now, don’t get too excited, it wasn’t a massive degree or such that it would get me a cushy job, working at some multi-national, million dollar paid job, but a portion of Community Development course and the fellow students, all fifteen of us had disabilities (very different kinds) and the course was only two full days a month because the rest of the time it was presumed, because we did work on our individual projects in our own time. Some people worked, some didn’t and while the majority had an ABI (Acquired Brain Injury) or Mental Health and a random MS, Polio, Scleroderma thrown in.

Leadership

Seriously, the contrast and differences were really obvious to me. By the way, my project was this blog. It took a few more years to come to fruition, but within a few years, I now have 230 followers. I call it a win.

Project

Not my point, that’s just the background.

I find because I want my time to be productive and I want to feel like I’ve/we’ve achieved something I step up in groups I go to so it’s not a complete waste of my time.

Productive day

In recent years I’ve stepped back from the Self Advocacy group I was the treasurer, for several years and I’ve concentrated on other things, the DAC (Disability Advisory Committee) I’m part of, in my local community, I’ve been dealing with the NDIS (nightmare) and live really.

Self Advocacy Group

I find myself on the out-skirts of the Advocacy group and at times I end up (self-nominated. I’m such an idiot) conversing and moderating issues.

Moderating

I firstly try to do as much in the moment so it gets done and we can discuss and move the fuck on.

Moving On

Today’s Lunch – 24th October 2018

Published October 24, 2018 by helentastic67

Todays Lunch

Today’s Lunch

Good Mental Health Day

45! 45, 45! Repeat after me! Helen is still 45! Because, my next mid-week blog post I will not be able to say this, I’m not struggling with getting older, or closer to 50, it’s only a day older than the day before.

45

I’m not exactly anywhere near where I imagined life to look like by this age. I don’t know what a 46-year-old should dress, or act, or even be doing however I’m doing the best with what I have.

46

Still trying to have my Wednesday return to some kind of normal, but it’s taking longer than I imagined. So, I’ve been missing out on my favourite cafe. But I will remedy this on Monday and hopefully next Wednesday!

Wednesday

In a meeting for lunch today, for the self-advocacy group I’m part of, not for fun but important. To be continued……………….

Self Advocacy

Meanwhile, here’s what I had for lunch! Butter chicken with white rice and a paratha.
Have to get medicine later!

Butter Chicken 1Butter Chicken 2

 

 

 

 

 

 

 

 

Butter Chicken 3

Cheers,
H

 

Hidden Pain

Published January 12, 2018 by helentastic67

Hidden Pain 1

Hidden Pain

Some people are really quite oblivious to the strain and pain on my body when I’m out and about because despite my walking stick and my left arm being in a sling (collar and cuff) and that I’m out of the house, it’s presumed I’m always wandering around with a smile on my face.

Walking stick and sling

In reality, sleep or lack thereof means my left leg works even less than “I make It” and the eyesight in my left eye is worse than people would realise.

Often what I carry and how it affects my mobility even more.

In my own backyard, even moving a few small terracotta pots around means my left hip hurts! WTF! I don’t even use my left side to do anything, so I’ve asked an OT/Physio what that is all about and she had no words of wisdom for me.

Small Terracotta Pots

Yesterday, I went to the city, I travel by car to a train station closer to the city, then a train from there.

When I’m out and about my ‘handbag’ (hate the term) is a large street-wear bag with the clash on it. (I just like the image) the strap on the bag hangs from my left shoulder and the bag sits on my right hip and gluts as in Gluteus Maximus. If I buy something when I’m out, it must fit in that bag. If I can’t carry it, I can’t buy it…

But yesterday, I also had to transport a delivery of Ginger Kisses. I have a cool bag, big enough for six cans (so Australian for those serious drinkers; not me, other people) and in it were 2 large ice blocks (heavy) and 30 Ginger Kisses (cool).

Ginger Kisses

I got out of the car at the train station carrying the walking stick and the cool bag and walked the twenty metres to the train platform without the aid of the stick.

I missed the train by “that much”. A train station staff member told me I’d missed it. No shit Sherlock! Because he hadn’t held it for me for two seconds despite my efforts.

Missed Train

So, I asked him to help me put the cool bag on better. I gave him both the stick and the cool bag. I eased the two loops of the collar and cuff down over my hand and proceeded to have him put the handle of the bag on my arm up under my elbow. The collar and cuff goes back on and keeps the bag from slipping down.

The weight of the bag hangs by my side and doesn’t obstruct the forward motion of my left leg.

On the train to the city I often find myself eating my breakfast. Vegemite and cheese on toasted bread. Good breakfast for on the go, not great every day.

Cheese and Vegemite

I got to the city, scooped up my coffee in my keep cup in Degraves Street and got to the AGM for the Self Advocacy group I’m part of. There was only one table at the front that four people were to sit at in a ‘panel formation’.

Degraves St

I put my bags down and looked around. No-one! So, I dragged a table over. At which point my left hip is hurting. Seriously, don’t know what it’s complaining about when it does nothing.

Had the meeting.

Did some serious walking.

More serious walking.

Walking

More serious walking.

It’s now been several weeks since I started this post. I think I got lost in the details. Relevant details, but today I was off to the city again with that damn cool bag.

Cooler bags

I realised how the added weight changes how I move and balance and the impact on just walking by the end of the day…

Hidden Pain

Limits

Published December 27, 2017 by helentastic67

Limits

Limits

With the possible exception of relationships with boyfriends in recent years, I’ve learnt my limit for dealing with bullshit or ‘whatever’ is four years.

There are some houses I’ve lived in for four years and I’ve moved when landlords wanted to renovate and sell, or just sell. I’ve now been where I am for four years and about to sign a lease for a fifth year. The last three years, the rent has been inching upwards to ridiculous.

Landlord

But to other things, such as my voluntary efforts, I generally throw myself in and do that original assessment.

  • What am I doing?
  • What needs doing?
  • What needs to change so I can do this?
  • What can or do we need to achieve by being here?
  • Is it achievable?
  • Am I being respected and supported?

When you put it into those terms, four years seems like a long time, right? So, it is with great frustration at this year’s AGM of the Self Advocacy group, I’m part of that I’m resigning from my role as Treasurer.

Self advocacy

I’m not a quitter generally, so it really leaves me unsatisfied and frustrated and grumpy.

No quitter

Next!

 

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