Who Cares?

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

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

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!!

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.

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

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.

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...

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

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

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

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