Esse quam videri

Esse quam videri is a Latin phrase meaning "To be, rather than to seem".

The history of this phrase also from Wikipedia is as follows:

Esse quam videri is found in Cicero's essay "On Friendship" ("De amicitia", chapter 98). "Virtute enim ipsa non tam multi praediti esse quam videri volunt" (Few are those who wish to be endowed with virtue rather than to seem so).

Just a few years after Cicero, Sallust used the phrase in his Bellum Catilinae (54.6), writing that Cato the Younger "esse quam videri bonus malebat" (He preferred to be good rather than to seem so).

In "The Prince", Niccolò Machiavelli twists this phrase to Videri Quam Esse (To seem rather than to be) with respect to how a ruler ought to act.

Dave Hingsburger uses the motto Esse quam videri at the top of his blog "Chewing the Fat". It's what he believes in and is how he works as far as I can make out.

It appears that our rulers have taken up Machiavelli's twist and applied it earnestly.

They talk the talk of equality for people living with disability but they, who have the means and the power to make it possible, don't walk the walk. Our rulers, leaders, Prime Ministers, Disability Ministers talk a lot about our right to a life the same as them. They even pass laws and Standards that say that. But they continue to keep us in poverty living on a pension which is below the poverty line. They continue to deny us the means to full participation by denying us the support services and equipment to make it possible. They fluff around consulting us to death about "what we need".

They invoke the Disability Discrimination Act which makes it unlawful to discriminate against us. They then leave us with a toothless tiger, the Australian Human Rights Commission, who fluff around looking like they are upholding those rights. But AHRC don't have any power to enforce the DDA. We are left alone to fight it out in the Federal Court to stop such discrimination. We fail because we don't have the means.

It's about time that our leaders take up the motto "Esse quam videri" and apply it earnestly. Either that or just come out and say with honesty that they don't care if we have the same means as them.

Come on Prime Minister, Premiers, Treasurers, Disability Ministers Federal and State. Cut out the Videri Quam Esse.

National Disability Strategy

This is my brief submission to the consultation:

1. What do you think should be included in the National Disability Strategy?

People with disabilities ONLY. NOT Carers, Families or Service Providers


2. What are the barriers to people with disability fully participating in the community?

Carers, Families or Service Providers

Lack of Access to:

- the Built Environment
- Transport
- Education
- Employment

Poverty

Chronic Unmet Need in Support Services and Equipment

Societal misconceptions and discriminatory attitudes

3. What have been some of your own experiences?

As a person with a disability WITHOUT a Carer or Family I am sick of being ignored and becoming invisible because of the focus on Carers and Families.

4. What local and national actions could be taken to overcome these barriers?

Just provide what WE need. Concentrate on People with Disabilities themselves. We are not attached to other people as adults nor should we be. While some of us rely on other people we can provide for carers etc (if we have them) if we are paid an allowance to pay such Carers etc. Those who are cognitively unable to manage their lives themselves usually have (or should) a LEGAL representative (who may be Family if so chosen) to enable this. All carers or families who are supporting people with disabilities who are over the age of 18 and cognitively unable must be required to have legal guardianship or administrative authority to speak and act for the PwD that they are assisting. “Care” should not be assumed or assessed by a GP or Centrelink or Gov Medical Officer. Some carers, families actually abuse, control and deny. Application should be made and granted through Guardianship Boards.

5. What areas of research should be a priority for the NDS?

People with Disabilities themselves should be the ONLY priority. Carers etc should have their own Strategy to address their needs if really necessary. However this should not be necessary if we PwD, are given the means to provide for Carers (see Q 4)

6. What local action has made a positive difference to people with disabilities?

Just provide what we need. Stop treating us like second class citizens. Simple really.

7. Anything else?

Until we (PwD) are recognised as individuals in our own right we will never be able to be truly free and independent contributing members of society. NO OTHER MINORITY is forced into such dependence or control by others as adults. For crying out loud stop forcing us into dependence and poverty.

New Photos and Sunny Warm Weather

I have just uploaded a whole bunch of photos in an album titled "A Tour round my garden". See the link under "My Photos" in the right column here. There's a lot there. If the pictures are blurry or pixelated in Slideshow mode (which is the easiest and best way to view them) then extend the time each slide is viewed to about 6 seconds and it will fix that.

So I have been busy gardening amongst my activist work. I have had the old raised garden bed down the side demolished as I couldn't get to it now I use a wheelchair. Now I can get right round the house again. You will see in the pics that I have set up a temporary raised bed with pots sitting on it for my Vegetable garden. So satisfying to have veges again and eat my own lettuce etc. Have put in tomatoes big and cocktail type, herbs - coriander, oregano, mint, sage, thyme, and have seeds for tarragon and spring onions, the spinach is still going well and the lettuce, radish, chives, and parsley I put in previously. I have also bought a Meyer Lemon for a pot and plan to espalier a nectarine and a feijoa on the bare corrugated iron fence out the front where there is more sun.

I am very chuffed with my rose which I espaliered on the back fence. It has over 200 buds on it and I can see it from my computer as I sit typing this. It was an ordinary standard rose but never got enough sun. Flourishing on the fence tho.

You will see my "lawn" is covered with top dressing as when the blokes were here doing my toilet modification they emptied all sorts of concrete slurry etc over it. What a mess. I went crook and so they top dressed it. While that's sort of ok it does make a mess of my tyres when it's wet and I track sandy dirt into the house. Grr. I have planted ground cover on one half of the lawn and plan to do the other side too. In a place that gets little foot or wheel traffic so that's good and saves on mowing.

It actually rained last night - hang on I better check the rain gauge... bugger, only 2mm but it sounded like more. Parts of South Australia have had up to 40mm overnight so that's excellent as we have had the driest 2 past months (this time of year) for over 100 years.

cheers
Glee

Have a look and see how the world treats crips differently

Check out these three videos on YouTube. You must watch them in the order I have given to get the story fully.

http://au.youtube.com/watch?v=FZfOVNwjFU0&feature=related    then
http://au.youtube.com/watch?v=k3AeIFup1qY&feature=related    then
http://au.youtube.com/watch?v=A9a2ZqLhuAw&feature=user

As a crip these videos called "Talk" above which are one cut into three make me laugh and cheer!!

And another called "Are we taking the dis" about how it is to live in a discriminating world if you have a learning/intellectual disability

http://dl.groovygecko.net/anon.groovy/clients/readingroom/takingthedis/takingTheDis9.swf

Similar things happen to physical crips too. A few examples: I often get asked when I go into a lift and am facing the back (as there is not enough room to turn around) "Does that have reverse?" Der. A friend reckons I should say "Hell No - I am a forward moving woman!" Or ppl comment in a patronising tone "gee you can manouvre that well". Why wouldn't I be able to as it is my full time form of mobility? I usually say "yes as well as you manouvre yourself". A friend who uses a manual (push yourself) wheelchair tells me that ppl say to her "you need one of those electric wheelchairs". She came up with a good answer which is to tell the plodding walkers that they need bloody rollerskates.

Crikey we deal with a lot usually without ripping someones head off. The patience and restraint we have is amazing.

Blog Action Day on Poverty

It seems that in the USA (maybe everywhere) it was Poverty Blog Action Day yesterday, see http://davehingsburger.blogspot.com/

Yesterday our Aussie Government decided to endow us pensioners with bonuses which is a good thing. As a single Disability Support Pensioner I will get the grand total of $1400 on the 8th of December. Hooray at bloody last!!!

BUT - seeing as other pensioners, Aged and Carers have received $500 and $1000 respectively per year over the past 4-5 years while DSP pensioners like me GOT NOTHING I am still hopping mad and not inclined to feel grateful at all. I reckon if you consider that as a person who looks after a crip (me) all on my own while being a crip ie I am my own Carer, I reckon I am $4000 down.

We crips have protested long and loud over the years about never getting the same bonus as others but the Government have ignored us. It took them til now to include us.

Where the fuck do they get off leaving us, arguably the most disadvantaged, right out of the picture? I know where we are - invisible, with everyone trying desperately to keep us invisible. After all we are useless, ugly, inconvenient, a burden, a nuisance and such a trial for our Carers!

They give the Aged a bonus as they have "contributed long to Australian society" and well, the Carers (unpaid except for a lousy pension) save the Gov billions of $ with their slave labour over their burdens (us). PAH!!!

When are the bloody Government and all of society going to realise that while us crips are left to live in poverty, in a discriminating society with an inaccessible built environment we will not flourish, grow, or contribute? They are such a bunch of bloody dickheads. Talk about missing a bunch of people who might be able to contribute to the economy if allowed.

Imagine (as an abloid) if you couldn't get out of bed or have a shower on your own and didn't have full support to do that. And then on the days that you did have support to get up there was no accessible transport to get you to work. Oh, work! That would be if someone "took a chance" and gave you a bloody job in the first place. Oh, but then you might not have had a full education so wouldn't be qualified to work anyway! You just get to sit in your wheelchair, if you have one, and rot!!!

That's life for a crip.

I'm damn sick to death of being treated like a nobody who should be nowhere. Even the Aged and the Carers didn't kick up a stink when we crips didn't get the bonus. So much for Carers caring about crips. Carers were just plain stupid not to protest that their "charge" didn't get a bonus as that would have helped their whole household.

Words fail me.....

Very sad news

Cathy Nirta died suddenly on Friday morning. The sky cried on Friday most appropriately and later, as Margie said when the showers turned into sun showers “even the sun is crying”. I have known her since she was 12 and I was 14 living at Somerton CCH together. She was my oldest friend. I feel stunned. Cathy was a pioneer of deinstitutionalisation even before it had a name. Got herself out of the Home for Incurables into a share house and finally into her very own unit on her own, sadly she only had 8 months of the latter. All this in spite of being female, severely disabled, the youngest daughter of Italian parents and the System that would control her, and probably (knowing her) without shouting at anyone!!

Caterina my true hero!

Hugs for all who knew her.

Glee

Satisfying day tinged with sadness

First the sad bit. As I do most days I went to say hello to my fish in the pond and looked and looked for "Big Mother" fish (about 6-7 yrs old) who is the mother of most of the 60 or so fish in the pond. I had some damn wild ducks visit the pond a month or so ago and they injured her as I guess she was slower getting away than the little ones. Her tail was a bit bent and her scales somewhat buggered up. She has been slow since then and I have been pessimistic about her continued longevity. Looking, looking but couldn't see her at all. Then I spied a pale gold blob under some weed and yes, there she was, dead. Poor old girl. So when my worker got here I fished her out with the net and we dug a grave amongst the begonias. I felt like I should say some words for her but nothing appropriate came to mind. Never mind I will say hello to her every day when I go out there just the same.

Then we planted some elephants ears out of pots into the fern garden, some little bulb type things into the bed along the back fence, small variegated lilies and a pot of violets given by a friend into the sitting rocks bed. Then filled up the vacated pots (lovely coloured old concrete and terrazzo ones) with new dirt ready for new vege plantings. And because it was 30C today and warming up generally changed the quilt on my bed for the summer lightweight one. Ah roll on Summer!

Tired now and time for dinner.

Nice to be home

Back home after five days in Brisbane for the AGM etc. What a successful time. The new board members are fabulous with a whole bunch of skills, experience, education, working lives and different ages and disability types. Such energy and enthusiasm. We had fun together too. I feel so uplifted by it all. We did our strategic planning and are all set for a year of good work. I was voted as President again and am pleased at that as I am really enjoying the work. Will tell you more about the Brisbane trip later and the organisation itself.

I was smart this time and employed the services of a support worker both morning and evening (instead of just mornings as has been my habit) to save my energy. Consequently I have arrived home just plain tired instead of totally buggered.

My sister C and hubby D came back today from Mt Gambier on their way back to Queensland. C did some sewing for me and cleaned up Jimmy's sunroom lounging bed as it was full of dust and spiders so it looks lovely now for the spring. Jimmy is pleased after initial consternation. Glee is very pleased with no consternation in sight.

Beautiful sunny day today and warmer tomorrow. The wisteria is busting out all over and smells gorgeous.

An Annual Report Soapbox Rave

This is the first part of an annual report I wrote recently and I didn't want to hide it in one place as I reckon it's a good rave.

cheers
Glee


Submission! What does that word mean to you? Here’s the online Free dictionary definition:

1. a. The act of submitting to the power of another: "Oppression that cannot be
overcome does not give rise to revolt but to submission" Simone Weil.
b. The state of having submitted. See Synonyms at surrender.

2. The state of being submissive or compliant; meekness.

3. a. The act of submitting something for consideration.
b. Something so submitted: read three fiction manuscripts and other such submissions.

Now to the reason for starting my report this way. As I was reading through our EO’s report I was struck by how many Submissions that we make each year – 13 to be exact. While I have read and approved each one and know that that is a fair hunk of the work we do it just suddenly struck me about the word ‘Submission”.

Even tho we are the peak body representing people with physical disability in Australia, the “experts” so to speak, we are still required to submit. “Our people” are also asked to submit. And definitions 1a and 2 are exactly the position that we are all in. We are oppressed and struggling to “overcome” but we don’t revolt, we “put in another submission”. We are forced into compliance and meekness. We are forced to beg for the same rights that most abloids take for granted. What a travesty. Shame, shame on our Governments both Local and Federal.

I am constantly angered by the amount of money (usually paid to abloids) that is spent researching our Needs and developing Models around managing our lives as people with disabilities. Why is this so? It’s not rocket science. If someone needs assistance to have a shower, go to the loo, cook their tea etc then what is hard about providing that assistance? Research and development around aids and equipment have provided us with a plethora of such things for us and our assistants to enable us. So why the research and why the submissions? It’s about being stingy with the money that is provided for us. You may say that they are spending a lot of money on research, but who does that really benefit? The abloids who earn big money doing the research. It keeps them in a job. It keeps it looking like they are doing something good. In fact with the present bureaucracy of Disability Services across the nation WE keep tens of thousands of abloids in work while we suffer and wait and wait endlessly. And we continue to be meek and submissive.

Let’s make 2009 the “Year of being Aggressive and Strong and Loud”. I know the reasons why most people with disabilities are not those things. Scared of retribution. Scared of losing funding or services. Scared of our service providers if we upset them. Scared to challenge a Support Worker as they may turn sullen or even nasty. Enough already. If we all challenge and shout all the time in the face of everything then they will be forced to change. Here’s the plan:

Ring every week to ask about progress on your Unmet Need.
Ring every week to ask about Individual Funding.
Hound the pollies about the lousy pension we get to exist on.
Write to the Paper every week.
Ring the local radio station every week.
Get a few mates and camp outside a pollies door for the day once a month.
Get onto ACA, TdT or the 7.30 Report.
Tell everyone you know how badly we are neglected and ignored and ask them to write and phone too.

New Pics

Put up some new pictures today.

Bit o gardening on a sunny warm day

Did a bit of gardening today with my sister C. She cleared all the stray leaves off the small pebbles that mulch my cacti/succulent garden and planted two new plants I bought at the Royal Show the other week. One is a prickly one yellow and green and the other is a more succulent type which is a pale glowing green in the middle spreading to pink and then burgundy to rust as it goes out. Photos later. They were only $6 each and quite big - beats Bunnings any day. Then a new layer of pebbles on top and a water - beootiful!

Off to Brisbane tomorrow for the AGM etc so see you when I get back. I will publish a blog on Saturday night which is an excerpt from my Annual Report.

cheers
Glee

Cured at 65??? What flower is that?

G'day Gina and Jalal,

Gina my crip mates and I often laugh about the cured at 65 (Woo Hoo bring it on) and then just go on the Aged pension thing!! DSP recipients have a CHOICE at aged pension age to change to Aged pension or stay on the DSP. DO NOT change as there are benefits at present on DSP that you will not be eligible for if you change to Aged. Always question and challenge cos they won't tell you.

Jalal they are Wallflowers, used to be common, an old fashioned plant and they smell nice too. They go best in full sun which mine aren't. Mine are leggy and falling over. In sun they are compact upright and chokka with flowers.
Erysimum linifolium 'Bowles Mauve' is a great perennial that will flower in late spring. Flowers are 4 petaled in spikes and bright mauve-pink to lilac in color. The foliage has linear leaves and a gray-green color. Wallflowers should be spaced 18" apart and will grow 24" tall with a 35" spread. These plants are great in rock gardens, along walls and in perennial beds.
Plant Use: Flowering Perennial
Exposure: Sun to Partial Sun
Water Requirements: Medium

I think they come in other colours too. Go get some. Not expensive.

cheers
Glee

GRRRRRRRR!!!

I am sooo sick of hearing about how the Aged pension is too little to live on! No actually I am sooo sick of them NOT saying how the Disability pension is too little to live on. Both pensions are the same amount of $$. How is it when there are 700,00o people living on the DSP that they can miss us or ignore us. I think it's a case of equal but invisible therefore not to be bothered with unless it's to have a good stare as we go by.

That's it. Too pissed off to say more.

Spring has Sprung

At last spring is here and my garden is flowering beautifully. Delicious smells of freesias, violets, night scented pittosporum, wallflowers and the wisteria is just about to burst forth. I have added new photos today. One folder called Garden Spring 2008, another Cats Spring 2008 and Toilet Modifications. Go over to the right column and there is a link to get to them.

The toilet is finished - well nearly. After installing the pan they then had to rip it out (dig up the new tiles, floor and all) and move it away from the back wall as they hadn't done it to Standard which would enable (when needed) a wheeled toilet chair to fit over it. So that meant another whole week without a loo. While doing that they managed to move it out from the side wall as well about 40mm. I didn't know this til after and that is no good either. How hard can this be guys?!! So now they have to come back and move it again but they reckon they can move it sideways about 20mm without digging it up.

You may ask "What's 40mm between friends?" Well when you are as wobbly as me when doing a standing transfer it is a hell of a lot! Anyway they will be back this week to move it.

My drains have been blocking up a lot over the past few years so I have cleared 3 concrete oblong ponds from the side yard (see photo, you can still see a remnant) so I can dig the drains up and replace them (I can feel a second mortgage coming on eeek) as there seems to be no short term solution. It is costing me about $300 per year to clear them which is too much to bear. The oblong raised concrete ponds were originally used for water plants for sale when this place was a nursery. I had knocked out the bottoms and filled them with dirt for a raised vege garden when I was still a wobbly walker. But now I can't get down the sides of them so they have been useless. Clear them out and I will make a vege garden in pots.

The veges I did plant some weeks ago did survive the snails and I have been picking spinach, silver beet, 6 sorts of lettuce, parsely, chives and coriander.

I planted some tiny white azalea plants in honour of a good friend S about 6 weeks ago and they are growing well and one has flowered already! You can see them in the photos too but they are only about 15 mm high.

My sister C and her hubby D are arriving Tuesday from Queensland for a couple of days on the way to visit D's parents in Mt Gambier for a week. Be great to see them.

Then I go to Queensland for the AGM and new Director induction, Governance training and Strategic planning for the year ahead. We have quite a few new directors this year so that should be lively and interesting.

I have posted part of my Annual Report as a blog but it won't appear here until the evening of the 20th Sept. So look out for it - one of my raves.

cheers
Glee

I Fell

I got out of bed and while standing to transfer to my chair I pulled the quilt up and carelessly unbalanced myself. As I felt the falling I threw myself at the bed and landed with my top half on it, on my front. Wriggle, struggle or haul for over 15 mins, I could not get out of that position. So I knew the only way to go was down further. Did I mention that I was naked and it was 10 degrees C in my bedroom.

So I slid slowly down onto my knees. I haven't been on my knees for over 5 yrs so it was a shocking thing to do. As I landed fairly gently, it hurt, my knees felt soft and useless and not like the knees I used to know. I tried to walk on my knees so I could turn and sit on the floor. Every 'step' really really hurt and as I tried to turn I fell onto my hands. Unfortunately my arms aren't what they used to be either and they gave way on me. I did a header into the bottom shelf of my bedside table and was terribly stuck.

I knew I had to get out of this position before I pushed my Vitalcall for assistance button as they would ring me when they couldn't hear me through the speaker. I wanted to be able to answer the phone (on the bedside table) so I could make sure they knew where the key was hidden. I didn't want the ambos breaking windows or door locks to get in.

So more exhausting struggling bashing my head and neck and finally I got slid down and onto my back. Rest for awhile and then get arm up to grab the phone. Thank Mum and Dad for my long arms, pushed the Vitalcall button, hear them calling me on the speaker and then the phone. At last I thought - it won't be long....

Then the ambo station called me and went through a checklist of symptoms to make sure I was not having a stroke, heart attack, asthma attack etc. I said "no I am just a crip who has fallen and no I am not injured". I did explain the naked, cold, on the wooden floor predicament tho.

So after awhile (still feeling very distressed at my new knowledge of lost capabilities) I rang a good crip friend who I know has been stuck in this same position. She listened and I cried and we talked and laughed and I cried.

After about 45 mins I rang the ambos back. They told me that they had lots of emergencies and they would get here asap. OK.

I rang my friend back and we did more of the same. After another 45 mins I rang the ambos again to be told that they had dispatched 2 ambulances to me but had to divert them cos of emergencies. This time I told them that I had a very weakening muscle condition and that if I lay here too long I will end up with pneumonia which is a common cause of death for us if we are left vulnerable. That did the trick. About 20 minutes later 3 ambulance officers arrived.

There was an older one (male) and two young ones (M and F). The older one I will call BOB as an acronym for Belligerent Old Bastard. BOB was just gonna go right in and haul me up. I said "No just let me tell you how. Straighten my legs out and then grab my hands and pull me into the sitting position". Well BOB did this but every inch of the way up he kept trying to let go on his assumption that I was "up". I had to keep saying "no further, further, further, I am not up yet". Can't the man "feel" whether I am holding my own balance or not? What a hopeless ambo.

OK now I am sitting. He was about to do another manhandle when I said "perhaps we could put my dressing gown on first" So the young woman did that. BOB then asked me if I could walk I answered "no" and he just started hauling perhaps with the other man on the other side. As he wanted to land me on my feet and let go again I had to almost yell at him that my legs wouldn't hold me (feet like fucking iceblocks by this time) but no he didn't want to listen and insisted on letting go. Down I went, albeit slowed down by him.

Then they did a big lift after the poor young male ambo had frantically tried to get my wheelchair around to me. BOB just continued like a bull at a gate and hauled me up and my dressing gown and bum caught on the front of the wheelchair cushion and it started peeling upwards. I told them that, so they just hauled harder. Still caught "you will have to get me higher" OK then it worked.

BOB was angry and belligerent when he got here. The two young ambos didn't dare to try to organise and just had to run around dickhead BOB's antics. I felt they were intimidated by him.

What a debacle.

I am now reorganising my emergency call list and adding more "home in the daytime people" into my list if I can find some. And I am going to ask my 85 yrs old very fit neighbour if I can give her a key and she can help. I doubt that she could pick me up but she could have got me sat up, warm and covered up with a hot drink and company while I waited.

I am still traumatised over this event and although it is nearly three weeks later am still exhausted from my initial struggles to get up.

That was on the Tuesday morning. I got a friend R (thanks heaps R for looking after me so tenderly in my exhaustion) to come and stay for a couple of days to take the load off while I recovered. He left on Thursday. Friday night going to bed I did a simple topple onto my side while sitting on the bed. Stuck again. Didn't bother with any struggle as I knew better this time. Pushed my button but could not be heard via the speaker (which is another room) and couldn't reach the phone. It was 1 am and fortunately the neighbour they called was up and in straight away with the ambos hot on her feet. 10 to 15 mins at most I was stuck there. Lovely ambos this time. I told them about Tuesday and they advised me to say if I was asked that "I feel a bit dizzy". The point being that while dizziness is not life threatening in itself it might mean something that might be urgent. Or, they said, just don't answer the speaker. Lovely men who tucked me into bed with smiles and fun. Thanks guys.

Bugger me if I didn't do it again in the morning!!!!! This time I had already grabbed the phone off my bedside table before I even moved to get up out of bed. So I simply rang the other neighbour/friends and they were there quickly (after their son J ringing them as they had just left to go shopping - they came straight back). They got me in my dressing gown, gave me hugs, hot wheat bags to get me warm and a cuppa. I was very distressed as I was envisioning ALL of my independence going down the gurgler by this time. Later these same friends came back from their shopping with a bunch of flowers and some lovely Cookie Man biscuits. So nice. Thanks J & C and their two sons J & R.

Oh dear, the tears are starting to well up in my eyes even tho it was three weeks ago. I am suffering from Acute Post Traumatic Stress Disorder PTSD right now. And I believe that crips suffer from CTSD Chronic Traumatic Stress Disorder (ie traumatic stress all day every day) brought about by Government neglect and society's exclusion, anti-disability behaviour and general prejudice. I feel scared and very vulnerable. I have been on the "UNMET NEEDS LIST for 6 years waiting for extra hours of in home support. I manage my whole life with just 12 1/2 hours of support per week at the moment. I would like to see an abloid get all their self care and household tasks and shopping and cooking etc done in 12 1/2 hours? No chance.

I live alone and do not have a carer as more than half of those on the DSP don't. Everyone seems to think we all have a carer. WE DON'T.

I believe that one of the reasons that I fell in the first place was because I had been struggling with makeshift shitting in a bucket toileting for nearly three weeks while they ripped my loo out to make it properly accessible. No alternative was offered while the loo was out of action. A perfect case of a gap we get to fall through while the abloids run around assessing and approving and then fucking up the mods. And this separate debacle is not over yet!!!

But that's another whole story "Diary of toilet mods" that I hope I have the energy to write one day soon.

Since all of this I have made serious complaints to DSA about their whole system which has been disintegrating or just fucked around with since they started their "restructure" into a "one stop shop". More like a "dead end street". "Fiddling while Rome burns" I call it. The bureaucrats are jumping as it was a very very angry complaint from a leading crip advocate. I have never used my "influence" in personal complaints before but this time I sure did. Every bit of my power I threw at them... They know me well as an activist/advocate so they know I am not to be trifled with. We will see what the outcome is - I will let you know.

Oh dear and life goes on........

You ARE there!!

I don't know how to check how many people view my blog. Just then I went to a blog I read often http://rollercoasterparenting.blogspot.com/ which I found through this blog http://davehingsburger.blogspot.com/. At rcp I found my blogs under Heike's list of Blogs I Read. So here I am Heike, giving you something new to read. I feel inspired to write. It's hard when I don't get many comments but then hey I don't write a lot.

In my defence I do a lot of typing every day and as I have weak muscles often I get too pooped to type. Yeah I know about voice recognition software - I have a PC and used Dragon Dictate and got on quite well with it. Then I went and fell in love with a skinny little easy access silent Mac and found I couldn't use Dragon on it. So I got bloody iListen didn't I, but just can't get on with it. It seems clumsy compared to Dragon. I have not been persisting with it which is silly so I must just have another go.

Busy doing the annual report today and musing back over the year. I tend to do a bit of a soapbox rant first up and then settle into the telling of the work done and work yet to do. When the report is made public I will put the rant part of it up here cos it's a good rant. Oh that's right I can do it now and schedule publication for after the AGM ...... done.

I read Dave's and Heike's blogs and any way I will have to make my own My Blog List and then you will know ...... done.

Oh the battle over who gets what!

I originally posted this comment on http://www.carers2020.com.au/recognition.php under

Glee

August 08, 2008 - 20:10

Subject: People with Disabilities themselves are invisible

I put it here as it took a lot of effort and I want it to be read more widely...

Well I will wade in with my boots on. I am an adult with a physical disability and am quite frankly totally sick to death of the Government's focus on Carers. First let me say that I know many carers and they are (overall) misused and abused, chewed up, exploited until they are at their wits end and then spat out. They work long hours supporting their children as all parents do with much extra. Many carers support adults with a disability too, Many, many and often until they hit the grave with little respite. Carers must be supported!

However in Australia at the moment the Government listens and responds to carers before they respond to PwD. Why? Because carers are a damn cheap labour source who are stuck and the Gov needs them to stay stuck so that Gov can save billions of $ every year.

All this does is deny the world a whole bunch of useful tax paying citizens - both the carers and the people they support. While we (PwD) don't get the support we need we can never get a good education, mobility aids, jobs etc. While parents/carers are worn out they may find it difficult to help their child grow to their fullest extent.

If the Government supported PEOPLE WITH DISABILITIES THEMSELVES properly and fully then no one would have to be a carer in the present sense of the word. Parents of children with disabilities would just be able to be Mum and Dad as their disabled child would have their needs met in the same way as non-disabled children do. Carers of adults with disabilities would be able to return to their primary role of mum, dad, brother, sister, friend to that adult.

You may be crying "idealist" and scoffing. Maybe I am but I will always seek the ideal otherwise I might as well just wheel off the top of a tall building.

Don't we all want equity which includes everyday needs being met? YES! Then lets chop the umbilical cord properly and let kids and adults with disability run free to be normally interdependent.

PwD and carers must work together on this. This is not happening at the moment. While carers keep speaking FOR all of us, both adults and children, we are pushed into the background and seen as only burdens without a voice. All children’s parents speak for them and that is as it should be regardless of disability. We must stand alongside each other and shout together. Imagine the strength and numbers in that!

The general public loves to go "oooh aren't you wonderful" to carers and "you are a saint". When the Gen Public do this they absolve themselves of any responsibility for the disadvantaged in society. They believe that everyone has a carer and everyone is fine. The PwD, as they have a carer and the carer as they can manage as they are superhuman (saint).

I for one don't have a carer, live on my own and receive minimal support thru Gov. That makes me invisible.

Remember the hoo ha over the suggested cuts to carer and aged Bonuses. Huge to do over it. All the carers and aged shouted bloody blue murder. I didn't hear one of them say "but hang on, what about people with disabilities THEMSELVES getting a bonus?" Not a peep.

As a person who lives solely on the Disability Support Pension DSP I have NEVER received a bonus let alone having it taken away. I live on exactly the same amount of pension as a person on the aged pension. But no bonus!! How is that so?

I feel like I don't exist in my own right. I have the same expenses as anyone else but with additional costs of disability and without the opportunity to gain a house, car and other assets that the aged have had over their lifetime. But no Bonus!

PwD are ignored and shoved aside, done to and around. I believe we are still seen as "useless eaters" and just must be looked after in the cheapest possible way. Despite all the rhetoric about equality, value and inclusion. It's all words, only words.

We don't need more studies on how to assist carers or PwD. It's been done to death. JUST DO IT I say. Spend the money and Gov and All will save in the long run. Less pensions, more working taxpaying PwDs, healthier happier PwD, carers back in the workforce paying tax and the multitude of talents that Pwd have will be accessed by the whole of society.

I am the president of a large PwD organisation and we shout loud and hard. We have over the bonus but they just ignore us. There is a review into Carer and Aged pensions going on - oh and they added we PwD in later. Woo hoo gee thanks!!

There is an organisation that represents all people with disabilities called the Australian Federation of Disability Organisations (AFDO). The Carers association should be working with AFDO. Hand in hand, side by side cos we are all being neglected, ignored and totally patronised by the Gov and society.

I have tried through a State disability organisation to work together with carers but have been fobbed off many times. I find that carers sometimes find an articulate PwD a bit hard to handle. I believe that they think I will not consider the needs of their child who may not be articulate. Such distrust. People with disabilities are the experts on disability and all adults with a disability should be empowered as such. Children with disabilities must be enabled and empowered by their parents and their adult peers with disabilities.

The Carer 2020 forum talks about "models". PAH. Let's just enable people - whatever it takes. We only need bloody "models" when someone is pulling the purse strings tight. Do non-disabled kids have models cooked up for them about how they must live? No. They just live.

Let people with disabilities live too. Let carers stop being carers and return to just live their original role of parent etc.

cheers and written in good spirit towards carers

Glee

Where I have been...

It's been raining a lot over the last few days which is soo great. Some of the big trees in my garden have been looking sick and I suspect it's about slow death due to lack of water with the severe water restrictions we have had. Scary, as they would be over 50 yrs old!

Have been reading and writing other ppl's blogs and neglecting my own. Here's where I have been:

http://davehingsburger.blogspot.com/ ‘chewing the fat’

http://ramblingsofawheelyracer.wordpress.com/

http://equalnotspecial.wordpress.com/

http://www.terriblepalsy.com/

and a long one here http://www.carers2020.com.au/index.html under "Discussion Streams - Recognition and Respect" as I am tired of the focus being mainly on carers (not to take credit from the work that carers do) and nothing on pwd. Mine is Glee August 08, 2008 - 20:10. Have a couple of responses under mine.

So while I have been away I haven't been slacking, just distracted. So many good bloggers out there.

cheers
Glee

Loo loo skip to my loo

Well the loo is done. It took nearly three weeks with all sorts of stuff ups that I can't bear to relate right now. I may do a "Diary of Toilet Mods" and post all the details for the wary to be prepared if it is happening to them.

While I say the loo is done and functional they are coming back to dig it up again as they did it wrong. The Occupational Terrorist (a useless occupation as far as I am concerned) did not do her job properly and neither did the builder. As I MUST have an OT for the job I left it to her to get some of the details right - BIG MISTAKE. It really annoys me as these people get paid good money - money I could use in better ways for myself. I DO NOT NEED AN OT. I AM THE EXPERT ON MY NEEDS AND THEIR REQUIREMENT IS INSULTING AND DEMEANING!!

I am a savvy person and I know the Standards for a crip loo. Did they take any notice of the Standards? NO. They put the pan close to the back wall and when I found it was installed too low (the OT didn't measure did she!) I could not even get my shower chair over it to get the height as it was too far forward which meant I would end up pissing on the floor.

So after yelling at the OT and the Builder they have insisted they make it right. So in another week or so they are going to dig up the floor again and move the pan forward as per Standards. This means another 4 days without a loo and back to using a plakky bag in a bucket under my shower chair. It's a disgusting business!!

So the moral of this story is NEVER TRUST AN OCCUPATIONAL TERRORIST.

cheers
Glee

Still no Loo

Here it is a week on and I still don't have a toilet. Starting to hassle the builder more to get moving. Thursday I might be able to perch on my comfy throne once more!!

One of my cats, Callie decided to make her own Hollywood walk of fame and liberally applied her footprints to the new concrete in the loo. And to make sure for posterity a few more prints in a bit of concrete on the back verandah. Good thinking Callie as the others will be tiled over.

Snails and loos

My lettuce are going ok. But then it hasn't rained. Thanks Jalal, I do go out and squish them but it's a little more complicated when one is on wheels. It's a yukky business trying to extricate snail guts from the treads of my tyres (let's not even mention dog shit). So what I do is pick them all up and then pile them up on the concrete, cover them with a large leaf and then run over them. Then I go inside and take five minutes of washing to get the snail slime off my hands. Eeewwwww.

I seem to have beaten the caterpillars too.

I am in the middle of having my toilet modified for wheelchair access so everything is messy with dust everywhere and stuff covered up and driving around on crackly plastic that is taped to the carpet. And jackhammers, rubble and freaked out cats and freezing all day with doors open etc. Not to mention using a bucket for a toilet. Oh dear I won't go on. sigh. Still it will be excellent when it's done....

Cold Enough for Ya

Middle of winter and am already sick of it. Hard to get out of bed in the morning.

But have been enjoying working out in the garden a lot lately. Looking good with begonias, wallflowers, alyssum and violas blooming. My first camellia came out yesterday and the freesias won't be far behind. Just noticed that at last my hellebores (which have been moved too many times) are about to flower - hooray. Have planted purple lobelia, more violas and more white alyssum. On the destructive gardening side I have been poisoning onion weed, oxalis and bloody asparagus fern. The latter is the bane of my life as it has invaded much of the front garden and is so hard to get rid of as it grows amongst the rock and deep into and up plants. Also sprayed the bacterial killer Dipel for caterpillars that were voraciously eating all new and some old plants - so frustrating.

Planted up some big pots with various lettuce, chives, spinach, silverbeet, parsley and sowed seeds of coriander and cress and put out some beer for the damn snails who were hopping into the lettuce.

Glee

Changed things

I have chucked out all my old posts and am starting again. You won't have to sign in or create an account to post a reply on GleeCrip now. There is a link to my Photos on Flickr as well.

Good oh