Saturday, 30 August 2008
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........
Wednesday, 27 August 2008
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.
Wednesday, 13 August 2008
I originally posted this comment on http://www.carers2020.com.au/recognition.php under
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
Monday, 11 August 2008
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’
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.
Sunday, 10 August 2008
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.