GleeCrip

Who Cares?

2010-12-20T19:52:00.000+10:30

From the Carer's Recognition Act - nice to see it defined:

"Who is a carer?

A carer, for the purposes of the Carers Recognition Act 2005, is a person who provides ongoing care or assistance to someone who has a disability. The disability may relate to a physical, intellectual or mental illness, a chronic disease, a terminal condition or may relate to a person who is frail and therefore needs assistance to carry out daily tasks.

Who is not a carer? (for the purposes of the Act)

Volunteers and paid staff working for agencies are not included in this definition. Neither is a person a “carer” only because of their relationship to the person cared for, or because care is provided to a child placed in the care of a person under the Children’s Protection Act 1993, or some other Act."

I do wish people would stop referring to paid workers as "carers" It's a loaded word and someone who is paid should not have it bestowed upon them.

Crips

2010-09-21T22:56:00.000+09:30

Facebook entries:

Glenda - Going to the Minister does not work for ordinary crips...

Others - ‎"crips"?? way to put the cause back 20years, Glenda!!
Glenda if we dont refer to ourselves in a positive manner, how can we expect anyone else to?
That is a very offensive term.

Glenda - I am reclaiming the word. It's strong and punchy. The homosexuals call themselves "gay" now, and so do we. Once that was an insulting term but the gays reclaimed it and made it strong. They even proudly call each other and themselves "poofs" in certain situations. I know many crips who call themselves crip and do so proudly. I know what "disabled" means and I am not gonna call myself that cos I do function and work!

Here is a blog post where the woman refers to herself as a cripple and you will see how powerful it is!!

http://wheelieanurse.blog.com/2010/09/02/just-when-you-thought-it-was-safe-to-get-back-on-the-train/

Do read it and you might just see where offensive really begins and ends.

By the way crip is also:
computer software
a gang or gang member
acronym, Continuous Revolution In Progress
acronym, Class Rebels Immortalizing Paint Spray.

I don't find it offensive because it means positive things to me and many fellow crips.

Tuesday, September 21, 2010

I have thought about this many many times over the past few years and have been again today. I don’t use the word “crip” lightly. I was appalled as a child to be called a cripple. I lived at the bloody Somerton Crippled Children’s Home and was appalled. I hated hated the Down Every Street Appeal for the Crippled Children’s Association. Been there done all that.

Is “disabled” any better? No. Is “handicapped” any better? No. Is “impaired”? Is “differently abled? Is “physically/intellectually challenged”? No!

I wish we didn't need labels to identify minorities but it seems we still do at the moment while we fight for equity. However I AM a person, woman, human.

Tonight on Good News Week, Josh Thomas (who is gay) kept repeating with glee the phrase “suck on that faggots” that Stephanie Rice said recently which shocked ‘everyone’. He said it was great that a sportsperson actually SAID something real. Josh was smiling and laughing and delighted in repeating the phrase. He said it at least 5 times with emphasis and then one of the others said “You, you can stop saying that now thanks Josh!” with squirm of discomfort. Josh was revelling in it. The discomfort was in the non-faggot man because he was ashamed of how it has been used to vilify, marginalise and abuse gay men.

I see the above with Josh as the same as when I use the word crip and the woman in that Train blog used the word cripple. The discomfort is in how you perceive the word. If you believe that “crip” is a put down then you let that old judgemental power be put on you forever.

Continuous Revolution In Progress
CRIPS GO!!!

Dishes

2010-08-13T20:46:00.000+09:30

you know that screen saver called "Marquee" on Windows where you can type in words and then they float across your screen like a banner? Yeah? No? Mine was "Love your disability it gets you out of doing the dishes". HAHAHAH

And - a few years ago after my new accessible kitchen was installed a friend Tim came around in his chair. I said "go try the sink". "No I can see it". "No go and get up to it". He went over and sat there. He turned and looked at me with this huge grin on his face which did not stop. He "it's amazing isn't it?!!!". Grin grin grin. Yup.

A middle aged man looking like he'd just won a million dollars. An ease, an access he had never experienced before!

It struck me almost like an arrow to my heart what deprived and imprisoned lives we lead. Disabled for sure!

I knew what sink access was like as a wobbly walker and how easy it was to get water out of a tap and do the dishes etc. I had my kitchen changed when I split from hubby and I was using the chair more and more. So as it is my kitchen now it is all low and mostly no cupboards except for a 30" section for any uprights, such as support workers, to use.

Tim's reaction high-lit a glaring example of how our environment affects us, stops us, disables us, make us DEPENDENT!.

I can still see the delight on Tim's face! :))

BLAH MORE BULL!!

2010-07-31T20:42:00.000+09:30

Last week I received a letter from Domiciliary Equipment Services here in SA because I am due to get a new wheelchair soon. I have been driving an electric wheelchair for over 15 years.

What they are telling me is that before I can have my new chair that I have to be assessed as MEDICALLY FIT TO DO SO by my bloody DOCTOR and then a further PRACTICAL ASSESSMENT by an OT or PHYSIO.

This is OUTRAGEOUS! What would my doctor know about driving a wheelchair? Bloody nothing!!

Bloody car drivers do not have to be certified as medically fit to drive a car before they buy one. A children riding around on footpaths and roads do not have to be certified as medically fit. Oh inequity and discrimination reigns as ever. What to do? I am so ANGRY about this. SOOOOO insulted.

Someone suggested that I refuse the assessment but I could refuse assessment and guess what would happen. I wouldn’t get my new wheelchair. I am sure this assessment bullshit has happened to many.

I can understand more if you have been diagnosed with a cognitive disability BUT even so we crips are the best adapters. There are many people who have strong spasms but still can drive their wheelchairs perfectly with no danger to others. Just another case of abloid judgments about us.

I think abloids should be assessed for competent walking before they are let out on the streets to walk in front of us and wander around texting and generally not looking where they are bloody going. Discrimination is rife.

It would be funny if we knew it was a joke. It is a joke but they are serious. Incredible.

Simple wheelchair repair - yeah right.

2010-07-09T19:02:00.003+09:30

Hmm do I sound angry today? YOU BET. I rang Domiciliary Equipment Scheme (DES) Maintenance yesterday and explained fully the situation with needing a repair to my wheelchair TODAY and that Extra Care know all about it and can do it cos I have already checked with them. Woke up at 11am today and immediately had to ring to find out why no one had rung me yet to tell me when they would arrive to fix my chair. I ended up shouting cos the DES lady was saying they will ring you. I told her that if they haven't rung me yet then they are not going to. I told her that Extra Care could do it today and she said "we have to get our Woodville man". I said: NO, HE WILL COME AND HE WILL SAY IT'S TOO HARD TO DO TODAY! She: I will get them to ring you. Me: NO YOU RING THEM AND FIND OUT AND THEN YOU RING ME AND LET ME KNOW!! She: I will get them to ring you! Me: NO YOU RING ME BACK She: errr Me: GET ME YOUR SUPERVISOR!!! She: ok ok I will ring you back.

She rang me 10 minutes later to inform me that the "Woodville man couldn't do it today and so I have sent the order thru to Extra Care". "Right" I said and hung up. I'm not stupid. I have long experience with this useless system so I really resent these people telling me what's what. They wouldn't have a fucking clue.

I hadn't even gotten out of bed yet and I was already infuriated.

Points to the lady who was shouted at. She stayed calm, didn't get patronising or nasty. She saw some light eventually and did as I asked and then demanded. Then she would have seen more light when she saw I was right.

The bearings in my front wheels were making so much noise that the clacking was hurting my ears and my cats were running away from me scared to bits. I have two important functions on this weekend and would have been an spectacle in my machine gun sounding chair. I had parts of my chair repaired a week or so ago by Extra Care but Tony and I agreed to not to do the bearings as they had gone quiet since my report to them and as I am getting a new wheelchair soon I would leave it to save some money for others. But yesterday the bearings started making this racket so I rang DES office straight away and explained the whole story.

Tony from Extra Care popped around this afternoon within 3 hours of me ringing them (I had prepared them yesterday to come today and rung them twice today in between my shouting phone call) and put two secondhand wheels on to tide me over. Not a hassle, not expensive and fixed. Fuck I am sick of this useless system here in South Australia. The lucky country they call it. Well, the bloody lucky ones do any way. Fuck. It doesn't have to be this hard!

Petty and puerile

2010-07-07T22:42:00.002+09:30

Some of my work colleagues (which is all I can call them now as they have cut me off as a friend) seem to be hell bent on picking on me but of course not directly to me. They are picking at every little thing I do. They are criticising my organisation and I don't know why. I have asked them but they refuse to answer. I have done nothing to them apart from not restanding to be on a committee after working for it for 10 years.

Fortunately soon I won't have to deal with them and that won't be too soon.

Why do people have to be so nasty and destructive when we are working for the same aim. I figure that the problem is within them. Their loss.

Beaten up and hurting badly.

2010-07-05T21:34:00.003+09:30

Not much of a post tonight as I have just been beaten up by charity loving people on Facebook who when I mentioned that charity is demeaning, well they all disagreed cos it's sooo good for volunteers and also that it is good cos it humbles one when one receives an act of charity. Get me a bucket. They wouldn't know the fucking meaning of humble. They got their bottom lips out and pouted. I typed a huge reply to help them understand but then lost the lot before I posted it. So I have been weeping with frustration as I don't have the wherewithall to type it all again. Fortunately one person who didn't trip up on their bottom lip wrote a huge reply that may just pull them out of their dogooder fantasies.

The link is http://www.facebook.com/home.php?#!/pages/WHO-Adelaide-Community-Assist/110236545687860?ref=ts if you are interested. In case you can't get into Facebook here is the text of the person who defended me.

Melissa Bishop-Zalewski
I would suggest many of us here have not been on the recieving end of 'true' charity (and I use the term 'true' in relation to Glenda's point). We all wish to be 'good' people with kindness and compassion in our hearts and living lives that make the world a better place for all. However, in our quest to make the lives of others better we overlook ... See morethe very people we originally set out to help. By that I mean that we become so consumed with our own ideals that we sometimes forget to stop and ask the people we are trying to help whether we are ACTUALLY helping.

I would like to believe everyone is capable of kindness and compassion to others. That we all strive to make the world a more equitable palce to live. That we do help others, not because we are looking for thanks or acknowledgements, but because we see that something needs to be done, someone needs an extra hand. We need to do this however with the understanding that the very people we are wanting to help actually want that said help in that particular way.

The examples that have been presented here are different in varying degrees as some are from friends who know friends and what they need. I think the point that needs to be established is that for some people, their ideas of helping actually end up patronising the people thay say they are helping.

Charity has many definitions, to be caught up on just one overlooks the bigger picture, but to not listen to other views in relation to 'help, aid, activism etc' is to go against everything charity stands for.

Perhaps we all just need to stop, listen and take more notice of things before we make ourselves feel better because we helped someone else. This obviously doesn't apply to every single situation but I hope it makes us all take an extra moment or two to assess the situation.

Thanks Glenda, as someone without a disablilty, you've made me think a bit more about things :)

Sing high - no - sing low...

2010-07-04T17:40:00.005+09:30

Twas sunny both days this weekend so I have been out! I went to the Gov Grrrellas singing group yesterday and had a great time. Did a warm up with Ms Vicki on the piano aaaaaaaaaaaaaaaaaa up and down and eeeeeeeeeeeeeeeeeeeeeee and ooooooooooooooooo. Then we got into some songs. Had a great time. Oh I said that. Ceridwyn an old friend/acquaintance introduced me to it as she goes most Saturdays. I must say I was pretty stuffed after tho. There were about of 8-9 of us and a couple of other newbies too.

Today I got out of my cuddly warm bed early and went down to Semaphore St Bedes Market to have a squiz and watch the Gov Grrrellas perform in the hall. When I get better at my singing and know the songs well I could be up on the stage too. But I won't be. Why? you ask. Can't get up there can I? Nup, as it about a metre high. Vicki suggested yesterday that they (there's always plenty of strong people around she reckons) could lift me and my chair up onto the stage. I didn't say no they won't or anything yesterday, I just smiled. People mean very well but they don't get it that my wheelchair and I weight 160 kg. I weigh 59 kg by the way!! They also don't get it that I do not trust strangers or anyone for that matter, to not drop and damage me or my chair or themselves. As well it makes a spectacle of me (watch em all gawk) and is terribly undignified.

That's ok... When I got there today I was watching the Grrrrellas singing and singing along quietly when I knew the words, out in the hall. One of the market organisers had been told I had joined the group and came up to say hello. lovely friendly woman. She suggested that they could clear a little space below the front of the stage and the others could be on the stage and I could be in front of them on the hall floor. Points for being thoughtful and caring and trying but WHAT???? NOOOOOOOOO!!! I just smiled again and said nothing.

Either we are all up or we are all down. No apartheid around me thanks. I know people don't see it that way and get quite offended if I say such things. I know it's an old hall and it would be hugely expensive and quite impractical to make the stage accessible. That's ok - I can deal with that.

I will talk with the Grrrellas next week and explain. Many of them are old feminists (mind you feminists are just as ignorant of the needs of plwd too) and I am sure they will get it. We will work it out together. And I will not compromise on this one. All up on the stage or all in front of the stage. Simple really.

People often say to me "why don't you find something fun to do instead of disability activism all the time?" This is why. But I will not just go away from this one and I am sure the Grrellas wouldn't want me to.

So cold

2010-07-02T23:56:00.002+09:30

Didn't want to get out of bed today so I didn't; until 2.30pm. Curled up with a warm cat snuggled up against me is a very nice place to be. My support worker had cleaned up the kitchen and lots of other jobs before I got up. My excuse is that I stay out of the way so I don't leave tyre marks on wet floors!

That's all for today as I am going to bed now or I will turn in to a pumpkin.

Busy Day

2010-07-01T23:47:00.001+09:30

Sleepy now and off to bed early - well early for me, before midnight! Last night an activist friend who lives nearby came for tea and we had a nice time. Today I have had a busy day with an old friend coming for lunch and yakkity yak. Tony the wheelchair repair bloke came and replaced my back tyres and the old cracked vinyl armrests and oiled the squeaks. He had to take my chair back to the workshop so I had to sit in an ordinary kitchen chair for over an hour. Did you know they don't bloody well move! and they are bloody uncomfortable!

Then at 5.30pm an Executive meeting by teleconference for Physical Disability Australia in the evening. Then some cleaning out and filing the multitude of work emails I get. I do wish I got paid for the work I do. Still as they say it's for a good cause - me and my people's rights.

Soup for tea and a toasted crumpet. Fed the cats and tidied the kitchen up a tiny bit. nighty night...

supcalifragilisticexpialidocious

2010-06-30T22:48:00.002+09:30

Don't mind the title of this post. I just have this thing about titles. I hate having to put one up before I start. So there you go. Often I don't know what I am going to write until I get into it. I guess I had just better write the post and then invent the title hey! Will do that next time.

Just watched a version of Blue Eyes, Brown Eyes on TV. It's a lesson on discrimination - racial - but it applies to any sort of discrimination. Jane Elliott divides a group of average people into blue eyed ppl and brown eyed ppl and then makes the rules that the blue eyes are the ones who will be the inferior and the brown the superior. She then devises all sorts of ways to have the blue eyes humiliated, segregated, made to wait, given inferior food, given tests that have been devised so that they will fail and so on. The Brown eyes are treated well and with respect. The Brown eyes play the game. Of course generally white people have blue eyes and black people have brown eyes. There are some that don't fit ie white with brown eyes but the blue/brown thing stands. I watch the blue eyes protest and roar and cry and leave the group cos they don't like how they are treated. They deny the whole situation and deny the subtlety of discrimination. They call Jane and the Brown eyes bullies. They are so confronted by their experience of unfair discrimination that they deny that such treatment exists.

It is astonishing and at the same time very believable as I see abloids deny that disability discrimination is rife or deny my experience of it. eg "they didn't mean it". Or as people have said to me "that's not patronising!" when they have just patronised me horrendously. They don't seem to understand that the patroniser or the discriminator don't get the say about whether it is or isn't. The person who is on the receiving end decides whether they have been patronised or not. It's hilarious to think anything else.

Soup and stay inside

2010-06-26T21:27:00.002+09:30

It was cold today. I went out for a little while to show my support worker something he needed to know. Outside work today, pulling out bloody asparagus fern, sweeping paths and driveways, getting the trellis out to put up tomorrow. Gonna have a go at espaliering a fruit tree along the front side fence near the climbing rose.

My worker made some pumpkin soup (his own recipe) and I had some for tea. Yum yum it was delicious. Now reading Board papers for a bunch of meetings on Monday. Bit o TV and do nothing much til bed.

Rain

2010-06-25T21:31:00.002+09:30

It's been raining last night and tonight like in Camelot. Sunny day today and had to go into the city for a lunch meeting. We sat in the sun and had lunch and talked. Always a good meeting.

Then did a bit of shopping and checked out the refurbished Woolies supermarket in Rundle Mall. Not bad, but am not sure that they have solved the queuing traffic jams. AND they have installed those scan and pay yourself checkouts. I did not go down that aisle but could see many of them from a distance and it appeared to me that NONE of them were accessible to wheelchair users. The scan plate was at around my midrib height and the pin pad at about my head height or a bit above. I will have a proper look next time and let you know.

Home on the train and that was nice, as finally we have a few trains that have been upgraded to comply with the Disability Standards for Accessible Public Transport and I got one of those. I space to myself that wasn't around the doorway and a button within reach if I needed to contact the driver (to put the ramp down for me to disembark). So nice at last. Also push button open and shut doors. auditory and visual announcements of next stop. Good railing and colour contrasts. At last. A train that truly welcomes me and my people too.

:)

Crikey she's bossy that Glee.

2010-06-24T17:20:00.002+09:30

Here I am and it might not be much til I build up but I vow to write something everyday. Have been exhausted and depressed. Stupid nasty people have been casting nasturtiums around the country about me which most people have ignored I think. But it doesn't help when I have been working hard as a disability rights activist and advocate for decades. Even tho these people have NO IDEA what I do (cos they cut me off and shut me out) they have the gall to say that I am not representing South Australia properly on Physical Disability Australia. It amazes me how often crips try to cut other crips down. Mean minded and egotistical of them for sure. As if we don't get enough shit from the abloids without attacking our fellow crips. Pathetic little cockalorums!

G'day

2010-06-23T23:12:00.001+09:30

I come here every now and then and I continue to see that I haven't posted anything. And it's SO ANNOYING! Better kick her arse into gear.

Glee

Encouragement

2009-08-05T20:56:00.002+09:30

goes a long way. Friends have been saying "you haven't been blogging, come on".

So here I am. Still hibernating. Although I have come out of my cave for long enough to go to Sydney for 2 days of Strategic Planning for PDA. And ventured out for a few meetings.

Got excited the other day when a bunch of coincidences happened. My friend Gen came around and saw my new vege gardens and told me that a friend of hers is making them now, Buckos. I said that's where I got them from! Then as I was seeing Gen off I checked the letterbox. In it was a special offer of bargains from Buckos to existing customers. So I rang up and ordered another 1.8 metre bed and two more of the round "herb" pots. Steve was pleased to hear from me and delivered them on Monday.

I was seeing my vege garden fill up (it's so satisfying) so now I have some more space. Lots of self sown lobelia seedlings are coming up in the vege garden so am transplanting them around the garden. Love free seedlings.

Facebook has been keeping me amused when I am tired. Have started Farming on Farmville and Farmtown. check me out on Facebook - there's a link here on my blog and join me in farming and be my "neighbour" (I need more neighbours!). It's fun seeing as I can't do real farming. For a long time I have been looking forward to technology setting us free (virtually) of bodily constraints. Now it's here and it's fun. Back to harvest my soybeans.

see ya all soon!

sleeping - hibernation

2009-06-29T23:37:00.002+09:30

well that's what I feel like doing. I have been sleeping a lot so nothing much to blog about. Have been getting into Facebook and finding people I know. Playing Bejewelled.

Housework today with my support worker. That's it really. Just keeping warm. Oh, the new heater for the bedroom works a treat. :-)

Glee

Misty Moisty Day

2009-06-27T00:47:00.004+09:30

Had a busy day today (well compared to when I sleep until 3pm). Really had to go and give a blood sample at the QEH so that they can test to see if the inflammation is abating and if my liver or kidneys or red blood cells are getting wrecked by the medications. Had been trying to get there all week but it has been raining a lot or I have been sleeping.

Was good to get out. A little sprinkly rain for a start, a misty moisty day. A two stop train trip and then a walk (wheel) to the Hospital. Went into Lizzy's cafe and had some yummy cauliflower and potato soup. Gave blood. NO WAITING. Must remember that Fridays are quiet as I have to go weekly for 5 weeks.

Then off to Bummings and Havy Normal to look at heaters. Bought one and carried it all the way home with it sitting on my footrests. Put it together and got it working. It is a tall oscillating one with a timer and a remote control. For the bedroom so I don't lie in the freezing cold if I fall again.

R came around and made a tasty stir fry including some bok choy and broccoli from my garden for tea and then went home after a yak.

Nice day.

Gina, at last your questions answered!

2009-06-25T21:22:00.002+09:30

G'day Gina and all,

I hadn't forgotten you. As it's while ago this is what you said/asked in response to my post http://gleecrip.blogspot.com/2008/11/national-disability-strategy.html:

Gina Wilson-Burns said...

I have been thinking about this one a lot, and coming back and re-reading it often. The more I think about it the more it makes sense.

As a mum of a 5yo boy with profound, multiple disabilities I am becoming more and more peeved at the Carer term. I have yet to send in my resignation as a carer to Mr Rudd as, at present, the $50 a fortnight does come in handy - goes some way to offsetting the $68K p.a. shortfall we have as a result of our child having a significant disability.

But, and this is where I would like to hear your opinion... What if our son (and every other person who 'qualifies their carer' for carer payments or carer allowances was actually provided with a "disability allowance" or "disability payment" until they turned 18 and then were privy to the disability support pension if they qualified or needed. As his parents we would be responsible for using this money appropriately - would it need to be more formal - I don't want to write off my parental rights and responsibilities - or be denied them just because my child has a disability - so this is the area I get most confused.

Get rid of the Carer Allowance and carer payment entirely. That way there is no "carers" just people who care or people paid to care. There are plenty of people happy to take the "carer" payments but would find taking a "disability payment" slightly confronting (this is good i think).

At this stage I do feel i need to provide a voice for my son but I really really really abhor the term carer - I am just a mum.

What I think is quite simple Gina and is probably where you are basically at. We are all people. Children are looked after, provided for and decisions made for by their parents until they reach the age of 18. Adults look after themselves, provide for themselves and make decisions for themselves. Regardless of race, gender or ability this is how it is for all people.

But as we know you get turned into a carer cos your child has a disability and I turn into a person with a carer cos I have a disability. (I don't have a carer but the assumption is there).

A "Carer" is a person who assists, looks after or cares for someone they are related to or "care" about for no money or a small pension. A "Support Worker" is a person who is paid a wage to assist a child or adult living with disability. We should have parents, spouses, relatives and friends around us as is normal in life and Support Workers to assist us.

Parents who have a child with a disability should get a Disability Allowance (as you said) to assist with anything that levels the playing field for their child and themselves. It should be assessed and automatic and never dependent on funding mingyness. Any parent of a child living with disability must have the same (no more, no less) responsibility for that child as for a child not living with disability. They must be allowed to be a parent and not labeled as anything else

When the child reaches the age of 18 that Disability Allowance is passed into their hands for them to manage and make their owns decisions as adults. This new adult may also then be eligible for a Living Support Allowance which provides for ordinary living needs, food, shelter, clothing etc should they be unable to earn a living for themselves.

IF that adult person with a disability cannot manage their own affairs, financial, personal or otherwise then guardianship must always be applied for and legally granted if needed. NO ONE should be allowed to have informal control or decision making powers over any other adult because they are related by blood or love (just because that adult needs different assistance than usual people). NO ONE!!!

Also the Allowance for the costs of disability must be over and above Living Support and never means tested. Ordinary living support is to be provided and paid for by the parents of their children with a disability as is the case with all children.

We should never be forced into dependency on others as adults. I mean dependency on an unpaid 'carer'.

Everyone in this world is interdependent on other people but people living with disability are forced to be DEPENDENT on others for their whole lives. Parents are forced to care for their adult children living with disability. This must not continue.

It's simple as we know. People living with disability must be afforded the same means and rights as all people.

Hope that clears up what I mean at least Gina. I have been reading quite a few blogs written by parents of children living with disability lately and I must say I am heartened by the fight in you all. The fight in you for the RIGHTS of your children to live an ordinary life. Go mums and dads - more power to you. Use it right for all our sakes.

hugs
Glee

My New Vege Garden

2009-06-24T21:38:00.008+09:30

First the old one

It comprised three 1 m x 2m concrete raised ponds originally used for keeping of water plants for sale (when this place was a nursery). They stood about knee height and great for me when I was a wobbly walker. Only walking space down each side tho - no wheelchair access.

So they haven't been used for 4 - 5 years since I have been using the chair. But then came:

That was temporary until Finally this is it now. Yay!!

This has happened over the past 8 months. Roy smashed up the old concrete gardens. That was a helluva job well done!!

Some more from just the other day. Seedlings up. Easily weeded. :-)

It's all so fantastic. I love it and having been eating the produce already.

I sometimes hate titles

2009-06-23T20:22:00.003+09:30

Well really it's hard to blog. Hard to do anything.

Crohn's sucks.

I am extraordinaryilyilyily tired. I have put on weight cos of the steroids which I am back on again again. They also can weaken my muscles. If steroids don't work then there is another drug they can try but that has risks for liver and other organs. Crikey.

I get stuck on the toilet and have to do extraordinary things to get off alone.

I fall again in the middle of the night - freezing cold, naked and with my thigh bent over an upright footrest and legs trapped under the other footrest. slammed shoulder and head into floor as I went down - ended up on my side. Jammed up against the bed and hanging off the footrest by my thigh. OOOOOOOWWWWWWWWWWWWWWWWWW. Can you picture that.

Anyway it was only about 12 minutes till two great ambos and neighbour M were with me. In my pain and position I had to instruct them how to turn my wheelchair on and turn the speed down and then drive the wheelchair out from under me while the other ambo lifted me a bit with a belt. Fark. But of course the wheelchair driving ambo drove it the wrong way and jammed me up a bit more. OOOOWWWWWW. Never mind they get it done and get me into bed and are respectful, careful, fun and not bad looking either.

M hid in the hallway for awhile until she was assured that my bone wasn't poking out of my leg. After the ambos left she stayed with me for nearly an hour to make sure I warmed up and that the shock settled.

12 minutes is a long time to shout OOOOWWWWWWWWWW a lot and contemplate my lot and my future. Scary.

That fall was last Wednesday night and I am still so weakened by it. I have been resting and getting extra support. Lucky I have been saving some hours up. I haven't been able to do work I said I would (just gathering and compiling some proformas and position descriptions and rewriting a bit). Too tired. Gotta save the arm energy for getting off the loo.

I am sleeping 12 - 14 hours a day if I can.

So that's the dark side sprinkled with bright bits of light.

Some good stuff now.

On Sunday T came round and we got a lamb roast going. Plus of course roast spuds, pumpkin, onion, and beetroot with gravy oh and brussel sprouts perfectly cooked by me YUMMMMMM. Marg came over and the three of us got tucked in. We all watched a movie that was a gift from a friend. Called "Once" and a nice simple movie to enjoy. We ate some chocolate and raved on. Had a good arvo.

Sitting around inside with the heating on while it rains and blows and sleeping all day are nice. Jimmy cuddles up to my legs when I'm in bed and Callie keeps my lap warm when I'm up.

My new vege garden is going well. Watch out for pics and the story soon.

Miss Molly

2009-06-16T19:07:00.004+09:30

My Miss Molly cat (the 15ish year old one) has a nice warm coat of earth since last week. I had to take her to the vet as she had stopped eating and wasn’t at all well (she has had ongoing overactive thyroid problems) and the vet and I decided to give her a little help to go over the rainbow bridge to cat heaven.

I hate doing that and always feel like a hypocrite as I am not into euthanasia for humans (really only because it is the thin edge of the wedge and people like me will be in line for it later when someone decides MY life is not worth living). Ah dear!!! That’s life and death.

I really miss the old girl who used to go round shouting for food all the time.

Callie and Jimmy had a look at her and a sniff when I brought her home from the vet. I always let the other cats see the other one dead if possible to let them have some idea of where they have gone.

So Callie is top cat now. Except I am actually top cat. Callie says "well that's what you think!.

Anyway thanks to the old Moll I am back on the blog again.

Be Very Careful What You Wish For!!

2009-03-22T15:17:00.002+10:30

A couple of posts ago I said "I want my drugs back". Well after another bout of horrible pain and another 4 days in hospital, guess what? I have my Drugs back - yep back on the steroids! And they want to cut a bit of my guts out to fix the problem this time.

I think they are being hasty so I am in discussion with the doctors about this one. An abdominal operation will be severely debilitating for me and could put me out of action for weeks and could result in me losing independence in some areas for ever.

As far as I have read in the official info they gave me the first time - cutting bits of the colon out is not considered the way to go in Crohn's disease. Some other Inflammatory Bowel Diseases it does work with. Of course I asked why they want to do it but of course didn't get an answer that I can recall. Probably cos they have just sharpened their scalpels and want to test them out!!!

I have had the initial bout and then this one. I reckon my disease deserves another chance with drug therapy before they get chopping and I said so. I have an appt with the Gastro mob on the 31st so will let you know.

I got myself out of hospital as soon as they would let me as I am learning how weak I get if I have to stay in. So four days after getting out I am nearly back to strength because I am in my own home and been using my normal environment instead of being hamstrung and having to have nurses lift me etc. Yay - in control!!

ALSO STOP PRESS

I now have an email address that you can contact me on if you want to. See at the top on the right above the picture of Harry.

Eliminate the Negative, Accentuate the Positive.

2009-03-01T22:22:00.004+10:30

Most people with a congenital disability and many of those with an acquired disability are caught in a cycle of negativity. For example, from the moment a person with a congenital disability is born the general reaction to their disability and therefore to themselves is one of negativity. As babies, toddlers and children they may hear people saying things like "what a shame she is like that" or "it's a pity she survived". The medical profession will talk about them in front of them about their inability and their deformed bodies or minds. They will be paraded in their underwear and poked, prodded and operated upon. The medicos will be the "experts", the ones who know how wrong these children are, and they will say so. Often opinions will be expressed as to the capacity of these children to "perform". Doctors and physios will say "she will never walk, talk, read a book, laugh, respond to you, drive a car, get married, etc". They will use words like deformed, weakness, abnormal, twisted. Often these children will not be expected to achieve anything, they will be teased by other children, stared at in public and avoided by other people. This is a cycle of negativity. This negativity seeps through to the child's core and leads to them having a very low opinion of themselves. They may see themselves only as useless and a burden. These feelings and beliefs last their whole lives through. Our whole lives through.

People who acquire their disability later on in life face similar treatment. Their lives as a newly disabled person will be catastrophised by others. Because they had a "normal" start in life they may cope better. They may have established themselves and their self-concepts before becoming disabled and therefore keep some of their self-esteem. But this cycle of negativity will affect them too.

We live down to these ideas. We live with feelings of inadequacy and rejection. Even talented intelligent people who are successful feel this way. English Artist Simon Parritt wrote in "My Views on this Exhibition" "I fear, through very painful previous experiences, that just as my body is rejected despite my other attributes, so my art will ultimately be rejected because of its source. So I have, like an ever-trusting idiot yet again, put my belief in you not to invalidate me."

In the past, and I think it is still the case, people with disabilities are often seen and thought of as useless burdens on society. I know I used to think of myself that way and it made me very unhappy. It has taken me many years of looking inward to discover who and what I really am. I have had to work hard to throw out all the old ideas and beliefs about myself. I used to believe that I was fairly useless. That I was a nuisance. That I was slow and weak. Lots and lots of negative stuff. But now I see the positive things about myself. I don't actually have to DO anything to PROVE myself. I no longer bust my guts every day to measure up to some normal standard. I have different talents and skills of my own that an able-bodied person will never have. I can see myself as I am and not compare myself to the norm. It has been a very liberating experience.

A man called Oakey Anderson of the Institute of Future Studies in Sweden said that for a country to be successful economically in today's world it must become a C SOCIETY. The four Cs. Our society must focus on Communication, Cognitive Capacity, Creativity and Complexity. I thought to myself "Well there is a society with a place for People with Disabilities".

We have heaps of untapped talent in all the four Cs. We have many alternative ways of Communicating - sign language, braille or perhaps just with our eyes if that's all we can move. And as for Cognitive Capacity. Of course there are lots of intelligent people with disabilities and also DIFFERENT sorts of intelligence. We have proof of that over the past two days. As for Creativity, well what a creative lot we are. We have to be very creative in using limited services, equipment, access and transport. We all achieve things that we would not be able to do if we tried to do them in the "normal" way. You should see how I pick up a heavy rock in the garden using my limited strength - it's a very complicated manoeuvre but it gets the rock where I want it! That leads me into Complexity, the fourth C. Our lives are very complex. In fact you could say that hardly anything is Simple for us. We could ask Sue who organised this conference how much more complex it was than if it had been a conference for non-disabled people. But we won't ask her cos it would take hours for her to explain the complexity.

So according to Oakey Anderson's theory we could think of ourselves as top notch. We could make this country successful economically if they would let us. One man who did let people with disabilities help him become rich was Henry Ford. He wrote in 1922 in his autobiography My Life and Work...

"I believe that there is very little occasion for charity in this world - that is, charity in the sense of making gifts. Most certainly, business and charity cannot be combined. The purpose of a factory is to produce and it ill serves the community in general unless it does produce to the utmost of its capacity. We are too ready to assume without investigation that the full possession of faculties is a condition prerequisite to the best performance of all jobs.

I am quite sure that if work is sufficiently subdivided - subdivided to the point of highest economy - there will be no dearth of places in which the physically incapacitated can do a man's job and get a man's wage. For instance a blind man was assigned to the stock department to count bolts and nuts for shipment to branch establishments. Two other able-bodied men were already employed in this work. In two days the foreman sent a note to the transfer department releasing the able-bodied men because the blind man was able to do not only his own work but also the work that had formerly been done by the sound men.

We have experimented with bedridden men - men who were able to sit up. We put black oilcloth covers or aprons over the beds and set the men to work screwing nuts on small bolts. This is a job that has to be done by hand and one which 15 or 20 men are kept busy.

The men in the hospital could do it just as well as the men in the shop and they were able to receive their regular wages. In fact, their production was about 20% above the usual shop production."

So if Henry Ford knew how productive we were 100 years ago why is there so much negativity about us. The acronym for Cycle of Negativity is C.O.N. CON. We must stop letting others con us with their wrong ideas about us. We must stop conning ourselves with old wrong ideas - ideas and beliefs that weren't even ours in the first place.

We know how hard we work and what we achieve with our disabilities. We know ourselves better than anyone. Better than Support Workers, Occupational Terrorists, Physios, Doctors or Service Providers. Certainly better than the people who shun us.

About ten years ago I was asked to do a workshop for people with disabilities who were considering entering university. I was told that the prospective students wanted information about how to fit in with the nondisabled students. My first thought when I was told this was "crikey, why is it that these people with disabilities think that they have to fit in with the crowd". So I changed the title of the workshop. I called it "getting the crowd to fit in with you". I told them that they don’t have to fit in with the crowd and that they should be themselves. I told them to help the other students to understand them so that the non-disabled students could fit in with the students with disabilities.

I told them how I used to have very strange beliefs about nondisabled people, able-bodied people. I used to believe that able-bodied people could do everything, knew everything and didn't help me because they didn't care. I believed all this stuff because of the cycle of negativity that I had experienced as a child. It was the able-bodied people who knew and said that I was wrong and crippled. It was the able-bodied people who tried to fix me. I didn't get any say and no one asked me what I thought. I didn't know how to make myself like them. And if they failed to make me like them then I believed that it was probably my fault. They seemed to know everything about me and repeatedly told me what they knew about me. When I didn't get the help I needed I thought it was my problem because it was my fault. I put able-bodied people up on a pedestal. The trouble was that they often failed me. I couldn't understand it. I thought it was because they were being selfish and mean. I became very hurt and eventually very angry.

So I undertook many years of psychotherapy to make myself feel better. I didn't know about the cycle of negativity then. I didn't know that my thinking was wrong. During that therapy I discovered a few facts. Three of the most enlightening facts that I discovered were: able-bodied people can't do everything, able-bodied people don't know everything and that generally able-bodied people don't help me because they don't know what to do or what's needed.

Before therapy I compared myself with able-bodied people. I measured myself against what they did. What a crazy thing to do. It would be just as sensible to compare an ordinary able-bodied person with an elite Olympic athlete. Does an ordinary able-bodied person get put down or put themselves down because they can't run a four-minute mile, complete a perfect high dive or lift 200 kilos? No of course they don't! Because that would be a crazy thing to do. I know able-bodied people don't have to hang around with elite athletes all the time. Most of us do hang around with able-bodied people all the time but we don't have to compare ourselves with them. We don't have to measure ourselves against their achievements.

Since therapy I have taken myself in hand. I've stopped waiting around for the ablebods to act or say something. I know what I can and can't do. And if I think I can't do something I at least have a good try at it first. I put my own value on myself. Everyone is valuable. Even Alice a person with a severe disability who can't move or do anything for herself is valuable. She provides an opportunity for someone to care for her, for someone to learn compassion and tolerance and patience.

I believe that the world is made up of individuals who are all different from each other for a very good reason. It's so we can learn from each other and have variety and excitement in our lives. Crikey it would be boring if we were all the same. Imagine a world without Elle MacPherson or Stephen Hawking or even Quasimodo. Anyone who has ever watched Quasimodo couldn't fail to see that there was something to learn from him, something that he could share with the world.

The theme of this conference is "Nothing about Us Without Us, Empowering Ourselves and Others". This is what we must do. We must be involved in things that affect us. In particular I'm talking about things in relation to our disabilities, about what we need to be effective and function in the world. So, that is the ‘nothing about us without us’ part. Then the next bit is; ‘empowering ourselves and others’. We can empower ourselves by throwing off the effects of the cycle of negativity. We can stop believing the rubbish that society tells us about ourselves. We can look at the positive things about us. We can think about the things that we do achieve and how we overcome the barriers that are put in front of us by society. We can celebrate our abilities. We can and must believe in ourselves because we are doing it. The proof is there every day. We can celebrate and knowledge the achievements of our friends who have disabilities.

We must also empower nondisabled people. We must set them right about us! We must tell them who we are, what we are and what we can do. We are the experts after all. How many times have you been let down by the knowledge and advice of an able-bodied person? I know I have many times. I don't want to be let down any more so I tell them what they need to know so that they can help me properly. We must stop thinking of ourselves as inferior and able-bodied people as superior. Able-bodied people are not superior they are just different. They are also ignorant about our true selves. We are the ones who can help them understand and know truly. This is what I advised those prospective Uni students years ago - help the crowd to fit in with YOU!

Another Englishman and artist Niel Marcus wrote in "How it feels to Exist"

"The world has bits and pieces of uncertainty concerning the handicapped, and that is why it is good for a handicapped person to say "hi". I have this strong feeling that the world needs to be shown some thing... the kind of education which is a human revolution. I have seen people wonder, "What should I say? What should I do?" These are very natural questions to ask. In the area of the handicapped it is the handicapped person who is going to settle all doubts and lead the way. This is why I say the world needs lo know that handicapped people exist. The world has something very special to learn, something very relevant to living."

Pictures have been running in the background throughout my talk. The first ones were from back in the 1800s and they continued right up to the present day. The photos in the beginning show examples of the negativity that surrounded people with disabilities. Some of them show in startling ways how our dignity was taken away from us when we were paraded up and down in long callipers. Two of those photos show pubescent young women with their developing breasts naked to the camera. The photos show restrictive and cruel equipment. They show wards of metal cots imprisoning children with disabilities in institutions. However as we moved through the photos we saw things looking better in the equipment department and perhaps even in the way we are treated. We have come a long way physically. Progress has been made.

We must come out of the dark ages in the ways that we think about ourselves and in the ways that we allow others to think about us. We must educate these people about us. We must set them straight just as they try to set us straight physically. We must embrace our wholeness because we are whole people. We must help them. As Niel Marcus said "the world has something very special to learn, something very relevant to living”. It's time. So now let us not be ever-trusting idiots yet again. Let's take charge!

© Glee 2004 May be quoted with acknowledgment.
Originally a conference presentation.

I want my drugs back!!!!

2009-02-28T22:01:00.002+10:30

Oh dear. Here I have been riding on a steroid induced high for a couple of months. Have been gradually weaning off since a month after I started them. On doctors advice I have been slowly weaning off the Prednisilone at 5mg each week. A friend warned me that I would hit a low when I stopped and it was a helpful warning.

I have been slowly coming down (instead of skipping around saying "isn't life wonderful" all the time) over the last three weeks and slowly getting more and more tired. What a total bummer!!!! Friends say "Why can't you stay on them?". Naa, very bad in the long term in many ways.

Now one would have thought that I would have been blogging madly while on my high. Nup - too busy eating, gardening, talking nineteen to the dozen and generally cruising on high speed happiness.

Anyway I just had a thought when trying to work out whether to go to bed early cos my head is nodding. The thought came to me when I was reading Heike's blog that shows her daughter using a highchair as a showerchair. Well that's what it looked like anyway.... very creative. It reminded me of a paper I wrote for a PDA conference a few years ago. I will post it here tomorrow. It's a bugger that often conference presentations are only done once and only a relative few ppl get to hear them. So now you can all read this one for yourself.

cheers,
Glee

HEATWAVE!!

2009-01-29T19:49:00.005+10:30

Here I am with sweat running down my back, neck and face. It has been over 40 degrees centigrade here for the past 3 days. Yesterday it was 45.7!! And this is going to continue at 40, 39 or 38 degrees for the next whole week!!!

I don't have cooling airconditioning (don't like it and don't really need it) and just use fans to move the air. If you haven't noticed I do have a garden with many large trees which generally keeps my house relatively cool even on the worst days. But this week the house is going to heat up. It's 33 in my back room today which is the most heat vulnerable of the lot and the room I spend most time in. In the core of the house it is about 30 degrees at the moment. I keep the house shut up and all the blinds down and all doors shut. This helps a lot but when heat is sustained the house does eventually heat up. Ah well I am a true blue Aussie woman and I can take it.

What I didn't think I could take was the diagnosis of Crohn's disease that came after being in hospital for week after a month of terrible gut pain. And the name Crohn's is not on. It reeks of old and decrepit and I am neither.. It reeks of a cranky old crone and I am not that either (some may argue)..

This is what I wrote to friends about the whole episode "Not to put too fine detail on it all I had been having bowel problems with awful pain getting worse for a month and going to the doctor but not getting better. I had been having on and off problems for the whole year actually and was getting slowly run down I reckon. I was being too stoic but got to the point of calling the ambulance for myself at 2am on the night of the meeting 5th Dec that Wayne said I didn’t sound too good at (I sure didn’t Wayne!!!). The upshot is probably Crohn’s Disease. Now ain’t that a shocking name. Although I was very crook and weak as a kitten I feel terrific now – am on steroids for a couple of months to get it all under control and they are making me speedy and with a ravenous appetite!! Unfortunately they are not the sort of steroids that grow muscles as I did inquire of the doctors as I do have Spinal Muscular Atrophy and was hoping for big muscles – damn. And also a Immunomodulatory drug (long term or forever) to moderate my immune system which has gotten too keen and ends up attacking the colon and making it inflamed causing blockage. As you can see I have learnt a lot in 3 weeks. It’s a chronic condition and can recur. I am however thinking very positive and determined that it will be mild and hardly ever bother me!!!!"

I must say that at first diagnosis I had thoughts of driving myself (in my chair) in front of a moving train. Now that was a desperate over reaction because I had known two abloid friends with Crohn's 30 yrs ago and they suffered very badly and I thought that with SMA and Crohn's that would be too much for a bear to bear. BUT, firstly, I would not inflict my death on an innocent train driver and anyway I won't let a little medical condition get me down and also the treatment has improved. Now, the treatment which is steroids for a period until the colon inflammation subsides - now dig the "side effects", aching bones, sore throat, flu like feeling, dry cough, rash and to top it off the best of them all (remembering that SMA Spinal Muscular Atrophy means ALL of my muscles are weak) weakened arms and legs!!!! Now is that fair!!!

Anyway I am rolling through all the side effects and they are slowly going except the weakness so far. I only have 5 weeks left on the steroids so things will improve more.

As I said I spent 3 weeks in hospital which included xmas day and this is what wrote to friends again cos it wasn't all bad and I did have a good rest "Funnily enough I had an excellent xmas day in hospital with some extra treats in my meals and a friend came to visit in the afternoon. We went out into the lovely garden at the QEH on a warm day and got stuck into a bottle of Sparkling Burgundy (well I did anyway, she had one glass as was driving!) and yakked and partied a bit. I weaved my way back up to the ward in time for another lovely meal and a yak with my room mate Betty.

The QEH (Queen Elizabeth Hospital Sth Aust) is great and I was well looked after. Only two bed wards or single rooms in a new wing, helpful lovely nurses, good food and clean sheets every day. Loved ticking the boxes every day to order meals and breakfast in bed! Rest and recovery at last.

What’s more I came home to my first ever DSP bonus in my bank account. WOO HOO!! Ain’t life grand!"

To change the subject the weather here has been perfect – anywhere between 24 and 30. Been doing some gardening, weeding, pond maintenance and tidying up. Things are looking good. EXCEPT. Found out that the reason my creeper on the side fence outside my kitchen has been going white over the past couple of months and then my tomatoes and then while in hospital my herbs and other vege plants IS BECAUSE the old bastard over the fence has been spraying my fence creeper a pink Tecoma and Honeysuckle (cos it pokes over the top of the fence) with HERBICIDE!!!!!!!!! WTF!! Heard him telling his friend that he sprays his garden with “a two pack spray to kill all the weeds”. Twice now I have found heavy white splashes of a milky looking liquid all over my kitchen windows and wondered where it came from. It’s him shooting his poison onto the creeper over the fence and a full three metres onto my windows!!!! So I went and saw him and asked him if he had been spraying my creeper and he owned up to it SO told him he can only cut the offending bits off and that he can’t spray my creeper and that he has been poisoning my vege garden and right over to my window and in my open window. I have cut the dead/white bits off, fertilized and watered so I hope everything recovers ok. I have taken photos of it all including the poison splots on the windows so if he does it again I will ring his landlord the Government Housing Authority and then next to Court. Goodness me I abhor plant haters!!!

I have been taking it easy for the whole of January and doing a stock take of my life and how I live it, so changes are happening. I am feeling very positive and enjoying myself going out with friends. Off to the Zoo at night tomorrow with Mags and her mum Kars - should be fun and hopefully cooler at night too!

I have taken some new photos of the garden again so check out the photos link on the side column here. I have planted some foxgloves, silver cineraria and campanula plants and forget me not, basil, spring onion, chilli and tarragon seeds and have been dosing the soil with soil wetter stuff so that it absorbs the water instead of running off. It works a treat. My lettuce grew marvelously while in hospital but I can't eat it as I am a low residue diet for awhile. So the radishes and spinach are being given away and hey the tomatoes didn't get to produce before being poisoned and are now recovering hopefully in time to produce some lovely tomatoes when I am allowed to eat them!! Soon I hope.

I have more to write of an activist vein on my experience of hospital and since in relation to having a disability... but later...

Here I am

2009-01-15T21:26:00.002+10:30

I have been sick. I have been in hospital. I am ok but am still struggling. I will write more on my stuff later and catch you all up and answer your queries from when I was absent especially Gina

I have been compelled to write this post today to repost Dave Hingsburger's post of yesterday from his blog "Chewing the Fat". I am appalled even tho I know this sort of thing does happen. Here it is in full.

Barry Baker.

Remember that name.

Let me tell you a bit about him. He was this 59 year old guy who lived a lone in the home he grew up in. His parents passed away. As a batchelor in his home, it grew into a state of messiness that is common for college kids and me on busy weeks. He'd had a series of health problems, he was overweight, he'd had a couple of hip surgeries and he walked with crutches. Barry, though, wasn't one to sit alone at home. His life was as exactly full as he wanted it to be. He took a cab every day to his workplace and every Sunday, like clockwork, he took a bus to his favourite pub. He was known in his neighbourhood and respected as a man with an intellectual disability who was making it on his own.

Then on November 29 of last year, a few weeks ago, he suffered chest pains. Wanting to live and knowing what to do, he called emergency services. The operator stayed on the phone with him as he waited for the ambulance to arrive. He collapsed and the operater listened to every sound hoping to hear his door open and help arrive. Well, she did hear everything, and what she heard astonished her.

The two ambulance attendants saw this big, fat, disabled guy, living in a messy home. They stood talking about him and decided that he wasn't worth saving. So they stood there and let him die, deciding to tell everyone that he was dead when they arrived. One more cripple out of the way, one more unnecessary life done away with. One more of us gone.

The operator immediately handed in the tape. Charges and investigations ... blah, blah, blah ...

A note of fear creeps into my life. What would ambulance attendants see if they came for me. A fat, disabled guy, in an apartment full of wheelchairs, long reachers, and grab bars. What value would my life seem if it was just my body they saw - not my connections, not my routines, not my hopes and dreams.

Sometimes there seems to me to be an immense gulf between we with disabilities and thee without - sometimes disphobia seems to be such a dark and evil prejudice.

Today, I mourn Barry Baker.

I tell his story here.

I will tell 5 other people his story.

Barry will live today, here in Toronto.

I hope you will join me and bring Barry's story to others, begin a conversation of the dangers of disphobia and the need for us to be alert to the fact that those who are supposed to save us, may indeed kill us, that those who are supposed to care for us, may indeed hate us, that those who we are supposed to trust - can't be.

BARRY BAKER.

A Victim of Bigotry

posted by Dave Hingsburger at 6:32 AM on Jan 14, 2009
https://www.blogger.com/comment.g?blogID=35743239&postID=4259837941670409383

Esse quam videri

2008-11-09T22:39:00.000+10:30

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

2008-11-08T19:55:00.002+10:30

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

2008-11-02T15:49:00.004+10:30

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

2008-10-18T16:48:00.004+10:30

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

2008-10-16T18:29:00.002+10:30

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

2008-10-06T17:15:00.004+10:30

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

2008-09-27T18:29:00.005+09:30

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

2008-09-25T20:44:00.004+09:30

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

2008-09-20T17:40:00.001+09:30

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

2008-09-18T13:13:00.001+09:30

Put up some new pictures today.

Bit o gardening on a sunny warm day

2008-09-17T18:40:00.004+09:30

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?

2008-09-17T13:00:00.002+09:30

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!!!

2008-09-15T20:22:00.002+09:30

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

2008-09-14T16:36:00.003+09:30

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

2008-08-30T18:00:00.000+09:30

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!!

2008-08-27T23:23:00.005+09:30

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!

2008-08-13T19:35:00.003+09:30

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...

2008-08-11T19:05:00.003+09:30

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

2008-08-10T12:03:00.003+09:30

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

2008-07-21T15:10:00.002+09:30

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

2008-07-16T20:38:00.003+09:30

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

2008-07-13T15:32:00.001+09:30

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

2008-07-13T15:28:00.002+09:30

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