supcalifragilisticexpialidocious

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

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

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.

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

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

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

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

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!

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

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.