splodgenoodles: (Default)
I am busy being gobsmacked about some stuff on the news. It's this stuff about baby Gammy and his biological parents. And I can't help but note that The Guardian don't have comments open on this article.

So much wrong here! Let's just start with the biological parents saying they wanted him aborted because "no parent wants a child with a disability". And their anger at the people responsible for not preventing the birth.

And the father's apparent inability to come up with a cohesive explanation of why they came home without him even though they're really heartbroken (allegedly).

Oh, and the father's convictions for child sexual abuse. He says he's no longer a risk because he's not sexually attracted to kids anymore...what about not being a risk because (regardless of his sexual urges) he has developed enough empathy to not wish to do harm to children? He is oblivious to that distinction.

I am angry that headlines support the parents claim they wanted their son but were somehow tricked by authorities, rather than picking up on the comment "no parent wants a child with a disability" and running with a headline like "Gammy's parents say they didn't want him". Because they did say that. And they think their desire not to have such a child is universal, and therefore okay and understandable.

Um, no. Not universal, not okay, not understandable.

~~~

I hope Gammy gets to stay with his surrogate mum (now possible with the amount of money donated to assist), I suspect his sister would be better off with her too.
splodgenoodles: (Default)
A man with cerebral palsy talks about his sex life.

A truly lovely series of images and video of a man with cerebral palsy. The pictures are sensual and erotic.

I love that in the video, the subtitles are displayed in a non-uniform way. All too often, it's easy to tune out a person with difference of speech and uniform subtitles provide clarity without creating a connection. The text in this video has expressive power that draws you in and reduces your capacity to simply objectify the subject.
splodgenoodles: (Default)
At least tomorrow I'll get to hang out with my fellow travellers.
splodgenoodles: (Default)
Nah.

Anxiety levels are the result of the Federal Budget. Basically, it's this topic that keeps triggering me. Other triggers for anxiety are floating around, but they're all ones that, prior to the week just gone, weren't causing this level of upset.

It frightens me because of both what it means in our country, what it says about our society's direction, and because of what it means to me personally.

In fact, those things are intertwined. These right wing, poor-blaming attitudes are going to effect me in very real, material ways. The sting of blame and retribution are the means to silence me and make me powerless to cope.

Nightmares about what's happening in the driveway: my world is not safe, my home is not safe. I am not safe. The outside world is pushing its way in and I'll be getting hurt.
splodgenoodles: (Penelope intro)
From the ABC website here.

One commissioner role cut from Human Rights Commission
Updated 1 hour 57 minutes ago

One of the less publicised aspects of the federal budget is the axing of one of the commissioner roles from the Human Rights Commission. The Disability Discrimination Commissioner has been axed, leaving six commissioners in other roles and the president. Current disability discrimination commissioner Graeme Innes, whose term ends in July, says the scrapping of the role will have dire consequences for the disability community in Australia, as it relies on the advocacy provided by a specific commissioner.


Ah the little tidbits that get left out of the main articles. There'll be more ones like this being noticed in the next few days.
splodgenoodles: (Penelope intro)
Trying to come up with a coherent comment.

There's a FB page for shaming people who park in disabled spaces. (You need to be a permit holder to use one. You don't need to be the driver of the car. You do need your permit to be visible on the dashboard. You get a permit through consulation with a doctor and application to your local council, the permit is not limited to your local area. The permit has a non-identifying number on it, and an expiry date).

One person has already posted about how he challenges people who display permits but who he doesn't think look disabled.

I need to find a way of getting past my upset about this so I can change peoples opinions.

I do not want to talk to strangers about my disability. My dislike of doing this is strong enough that although i can get around in a mobility scooter, I frequently don't because I get sick of questions and stares.

My eligibility for the permit was sorted out confidentially between my doctor, the local council, and myself. And the reason for the permit, surely, is so that I can go about my business without having to ask total strangers to believe me should I(or a carer) tap on their window/stop people to explain that although I'm not obviously disabled, I do really need to limit my movements, could they please give up their parking space for me? Isn't privacy and dignity what this is all about?

I have seen people whose authenticity I doubt, but....I don't know them, I don't know their business, and I'm not entitled to challenge them. Why should they tell me? As a person with a permit, but with a strong preference for privacy, I would rather that a few people fraudulenty use them than I have to give up on my right to privacy and to go about my business without talkign to strangers.

Should we have concerns that a permit is being used fraudulently, why not take down details of the permit(and who appearrs to be using it) and contact the relevant council?

And would it not make more sense to put energy into encouraging councils to police disabled spots with more vigour? I would be quite comfortable if a parking inspector were to ring my number into a hotline, and check that the name attached to the permit was the same name as the ID I always carry in my wallet. The parking inspector doesn't need to know/ask about my reasons...they just need to know that it's me.

Weigh in folks. I suspect I need this to be less wordy. I also need to tamp down my upset, because it only ever comes across as cranky.
splodgenoodles: (Lady Penelope's does her thing)
It was bound to happen eventually. I'm sitting in the nearby park, VERY OBVIOUSLY drawing in a sketchbook, sitting on a bit of obviously-for-sitting-on fabric, bottle of water and bag o' stuff to one side.

"Do you need help?"

"No thanks!".

"Are you sure??"

"Yes - I'm drawing - see?" (I hold up pen and book and point to tree).

"You can get up?"

"No I fucking can't. I came here to commit suicide by dying of exposure while drawing a palm tree." (I didn't really say that. I assured her I could get up, again indicated that I was fine and shooed her away in the politest way I could that didn't involve actually venom or spit. She was surprisingly reluctant to FUCK OFF.)

Dear world, "No" is a complete sentence. "No thanks," is a complete sentence with bonus courtesy for which you should be grateful.

Even when it comes from someone sitting in or next to a mobility scooter.



(I'm going to have to get used to this, aren't I?)
splodgenoodles: (Lock stock stoner eyes)
I am developing a serious level of admiration for my fellow sickies and crips who live alone.

This life is weird.

You guys are awesome.
splodgenoodles: (Default)
I really have no idea. One of those spells where I consider my to-do list and wonder just who the hell I am and what it is that I actually do with my life.

~~~

In other news, tonight a small child pointed at me and laughed. Me, not Bazza the scooter.

Odd, usually children of that age (and younger) are curious, but about the scooter. And often it's sheer delight: one child won a place in my heart with a gleeful "you've got a little car!" (Should the opportunity ever arise, such kids will be allowed a free ride).

(And come to think of it, at least one adult has said the same, with equal glee, but he was a bit too big to sit on my lap).

But this was not that, I'm afraid. There were, unfortunately, no other adults paying close attention and I wasn't going to stop and go looking over such a small event, but it did leave a bad taste in my mouth.

On the plus side, one of her little friends did pipe up with how "that's like Aunty so-and-so...", so maybe this will advance her social awareness/empathy.

~~~

Of course, there's always the possibility that it was me, not the scooter.

Maybe I should stop wearing that fake red nose...
splodgenoodles: (Default)
I really have no idea. One of those spells where I consider my to-do list and wonder just who the hell I am and what it is that I actually do with my life.

~~~

In other news, tonight a small child pointed at me and laughed. Me, not Bazza the scooter.

Odd, usually children of that age (and younger) are curious, but about the scooter. And often it's sheer delight: one child won a place in my heart with a gleeful "you've got a little car!" (Should the opportunity ever arise, such kids will be allowed a free ride).

(And come to think of it, at least one adult has said the same, with equal glee, but he was a bit too big to sit on my lap).

But this was not that, I'm afraid. There were, unfortunately, no other adults paying close attention and I wasn't going to stop and go looking over such a small event, but it did leave a bad taste in my mouth.

On the plus side, one of her little friends did pipe up with how "that's like Aunty so-and-so...", so maybe this will advance her social awareness/empathy.

~~~

Of course, there's always the possibility that it was me, not the scooter.

Maybe I should stop wearing that fake red nose...
splodgenoodles: (bobthebuilder)
While I entirely appreciate that a court case is the best way of determining culpability, if you ever think I whine too much about quality of care for disabled people, consider the following.

An excerpt From The Age, November 3, 2009:

Four Charged Over Betts Killing

(I'm not including the details, they are distressing and not relevant to my gripe. Suffice to say it's a murder trial and this woman has been charged with being an accessory to murder.)

Godfrey in contrast was red-eyed and cried as she applied for bail, which was rejected.

Dressed in black and with a ponytail, she said she was not a flight risk and was due to start a new job today as a disability carer. She said she was filled with fear over what had happened. ''I did not say anything as I was too scared,'' she said.


The point being, that if you ever need a job where the employers won't care where you've been and don't care where you're going, you can get work with disabled people. Going into the homes of people who often live alone, are isolated and dependent on *you*.

And if I may be cynical for a moment, it has the added advantage that working with disabled people tends to get you brownie points if you do need to provide proof of good character/good prospects of rehabilitation at any point.

I know there's much more to the story than this, there may well be extenuating circumstances, but the care industry really needs an overhaul. A good employer will surely look for more than a criminal records check, which only provides information on convictions, before employing someone for this sort of work. I find it hard to believe that a reasonably conducted job interview would not have uncovered some anomalies in this woman's presentation of herself. If not her impending court case, a work record and CV that would have reflected what appears to have been a very erratic lifestyle.

Yep, overhaul needed.
splodgenoodles: (bobthebuilder)
While I entirely appreciate that a court case is the best way of determining culpability, if you ever think I whine too much about quality of care for disabled people, consider the following.

An excerpt From The Age, November 3, 2009:

Four Charged Over Betts Killing

(I'm not including the details, they are distressing and not relevant to my gripe. Suffice to say it's a murder trial and this woman has been charged with being an accessory to murder.)

Godfrey in contrast was red-eyed and cried as she applied for bail, which was rejected.

Dressed in black and with a ponytail, she said she was not a flight risk and was due to start a new job today as a disability carer. She said she was filled with fear over what had happened. ''I did not say anything as I was too scared,'' she said.


The point being, that if you ever need a job where the employers won't care where you've been and don't care where you're going, you can get work with disabled people. Going into the homes of people who often live alone, are isolated and dependent on *you*.

And if I may be cynical for a moment, it has the added advantage that working with disabled people tends to get you brownie points if you do need to provide proof of good character/good prospects of rehabilitation at any point.

I know there's much more to the story than this, there may well be extenuating circumstances, but the care industry really needs an overhaul. A good employer will surely look for more than a criminal records check, which only provides information on convictions, before employing someone for this sort of work. I find it hard to believe that a reasonably conducted job interview would not have uncovered some anomalies in this woman's presentation of herself. If not her impending court case, a work record and CV that would have reflected what appears to have been a very erratic lifestyle.

Yep, overhaul needed.

So there.

Oct. 3rd, 2008 06:53 pm
splodgenoodles: (Default)
Interesting conversation tonight with Big Sister.

It transpires she does get quite a few people who ask after me and then go on about how wonderful 10B is to stick by me.

I'm happy to say she finds it offensive too.

~~~

We got onto this because I told her about a conversation I had with a friend(you know who you are!) recently about my observation that having a disabled wife seems to boost the status of 10B, and said friend said he really wouldn't like to comment, so I challenged him to deny it was true and he was even more adamant about not commenting. Heheheh.

It's somewhat akin to how people react to men with pushing babies in prams or cooing over cute puppies. I also notice it when we're been out and about together and I'm in the scooter or the chair - women fawn over him in a way they don't when I'm just walking with him normally.

It doesn't happen among our close friends. They know me as well as they know him. Therefore, I assume, they know me as *a human being with a personality* (or possibly as a bitch with a temper who won't stand for that crap). They also know 10B as a human being with a personality...which means they're presumably quite clear that we are both saints for putting up with each other. So there.

~~~

There is a very important distinction between supporting carers in their role and degrading and disparaging the person for whom they care. People miss that. Further, they reduce our relationship to one of nothing more than selfless martydom and powerless gratitude.

Selfless martydom is bollocks compared with love and respect and friendship.

~~~

There are a range of tactful and honest responses which involve pointing out that maybe I am worth the trouble, maybe he just happens to like me, maybe it's a two way street and I put up with him too...that sort of thing.

And yes, given most people who get married apparently bail out when their spouses become disabled because it turns out they didn't mean it when they said "in sickness and in health", I guess I am pretty fucking lucky. But I am tiring of the implied insult to me, to 10B and to our marriage.

~~~

Next time it comes up:

He's with me because I fuck like a whore.**


**thankyou, [livejournal.com profile] scarletdemon

So there.

Oct. 3rd, 2008 06:53 pm
splodgenoodles: (Default)
Interesting conversation tonight with Big Sister.

It transpires she does get quite a few people who ask after me and then go on about how wonderful 10B is to stick by me.

I'm happy to say she finds it offensive too.

~~~

We got onto this because I told her about a conversation I had with a friend(you know who you are!) recently about my observation that having a disabled wife seems to boost the status of 10B, and said friend said he really wouldn't like to comment, so I challenged him to deny it was true and he was even more adamant about not commenting. Heheheh.

It's somewhat akin to how people react to men with pushing babies in prams or cooing over cute puppies. I also notice it when we're been out and about together and I'm in the scooter or the chair - women fawn over him in a way they don't when I'm just walking with him normally.

It doesn't happen among our close friends. They know me as well as they know him. Therefore, I assume, they know me as *a human being with a personality* (or possibly as a bitch with a temper who won't stand for that crap). They also know 10B as a human being with a personality...which means they're presumably quite clear that we are both saints for putting up with each other. So there.

~~~

There is a very important distinction between supporting carers in their role and degrading and disparaging the person for whom they care. People miss that. Further, they reduce our relationship to one of nothing more than selfless martydom and powerless gratitude.

Selfless martydom is bollocks compared with love and respect and friendship.

~~~

There are a range of tactful and honest responses which involve pointing out that maybe I am worth the trouble, maybe he just happens to like me, maybe it's a two way street and I put up with him too...that sort of thing.

And yes, given most people who get married apparently bail out when their spouses become disabled because it turns out they didn't mean it when they said "in sickness and in health", I guess I am pretty fucking lucky. But I am tiring of the implied insult to me, to 10B and to our marriage.

~~~

Next time it comes up:

He's with me because I fuck like a whore.**


**thankyou, [livejournal.com profile] scarletdemon
splodgenoodles: (Default)
Wheelchair Unbound

[livejournal.com profile] feyandstrange gets justifiably pedantic at Reuters. Yay!
splodgenoodles: (Default)
Wheelchair Unbound

[livejournal.com profile] feyandstrange gets justifiably pedantic at Reuters. Yay!
splodgenoodles: (Lady Penelope's car.)
It would make such a difference to my life if shops did not have that tiny little step at their front door. It's usually at least 5-10cm high. My scooter can only do 5cm(apparently) and that's a bone rattler.

It rules out the local supermarket, for starters. And being able to get round there would be a serious bonus.

Well. Not a bonus. Something I *should* be able to do. It happens often enough that I go without things I'd like because 10B is working and I can't do the walking, and it drives me nuts on days when I'm well enough that I know I could do it if I could just stay in the damn scooter.

A lot of other places are still ruled out because they aren't accessible inside or because they have doors that are not automatic.

But there are a few I could patronise more often if it weren't for that little step. The chemist is sort of accessible if I can face a twenty point turn to get round their aisles. The bakery - well I guess it's just a crap bloody Brumby's anyway - but I'm disinclined to go to all the trouble of parking, collecting the keys, getting out, going inside and then doing it all in reverse just for a small item or two. So much for impulse buying.

I'd be really happy to slouch around in a cafe if I didn't have to park the scooter outside and then keep half an eye on passers-by. And now that they're all putting chairs and tables on the footpath, it's actually harder for me. I don't like sitting out in the street much, especially not at this time of year, so Bazza can't be parked where I can easily see him. If he's directly outside the cafe he's blocking the footpath, so he has to go off to one side of their tables on the outside of the footpath. That bugs me.

Such a little thing.
splodgenoodles: (Lady Penelope's car.)
It would make such a difference to my life if shops did not have that tiny little step at their front door. It's usually at least 5-10cm high. My scooter can only do 5cm(apparently) and that's a bone rattler.

It rules out the local supermarket, for starters. And being able to get round there would be a serious bonus.

Well. Not a bonus. Something I *should* be able to do. It happens often enough that I go without things I'd like because 10B is working and I can't do the walking, and it drives me nuts on days when I'm well enough that I know I could do it if I could just stay in the damn scooter.

A lot of other places are still ruled out because they aren't accessible inside or because they have doors that are not automatic.

But there are a few I could patronise more often if it weren't for that little step. The chemist is sort of accessible if I can face a twenty point turn to get round their aisles. The bakery - well I guess it's just a crap bloody Brumby's anyway - but I'm disinclined to go to all the trouble of parking, collecting the keys, getting out, going inside and then doing it all in reverse just for a small item or two. So much for impulse buying.

I'd be really happy to slouch around in a cafe if I didn't have to park the scooter outside and then keep half an eye on passers-by. And now that they're all putting chairs and tables on the footpath, it's actually harder for me. I don't like sitting out in the street much, especially not at this time of year, so Bazza can't be parked where I can easily see him. If he's directly outside the cafe he's blocking the footpath, so he has to go off to one side of their tables on the outside of the footpath. That bugs me.

Such a little thing.

*facepalm*

Jun. 16th, 2008 04:52 pm
splodgenoodles: (Default)
I think I just got fobbed off. Mind you, the librarian in question was probably about to leave for the day.

I'm after some books either as inter-library loans or purchase requests if the library decides they're worth purchasing. At the moment, a trip to the library is not on the menu. But I figured if I could get the ball rolling then once they arrived I'd have a window of a few days to either pick them up myself if I could, or failing that to see if 10B could get them for me.

My local library says that you have to come in in person to do inter-library loan requests. I rang up and explained that disability makes this a bit of a challenge and asked if I could do it over the phone.

Yes no problem.

But then after all that, when it had been determined that the items weren't in the collection (I'd already checked online but I do understand they need to double check), and some of these items were in fact put in as purchase requests, I was told that it was all okay, and now I'd just need to come in now and fill out the interlibrary loan forms, and it would be fine because it only takes a couple of minutes to do that...

I dithered and re-explained that this was difficult and that's why I was ringing. She then said something I couldn't really follow about how things sit in folders for a couple of weeks and then get thrown out. And then she thought for a moment and suddenly brightened up and suggested maybe I should send an email explaining my situation and listing the books I was after. But that that should be my idea and not hers (uh...what?).

~~~

It's possibly that I made the fatal mistake of saying that *sometimes* I can get into the library (but that it's difficult - and two trips, to fill in forms and later to pick up books, is a big effort). Better to simply say 'disabled', no ifs or buts, no compromise positions - no attempts to meet people halfway. No 'if I can order these, my husband can pick them up...or maybe I can if I've got a window of a few days.' The moment you acknowledge that you aren't completely helpless you risk losing any help at all.

The problem, I think, is that people don't get that when I say "I can come in sometimes, but it's difficult" I'm essentially trying to meet them halfway and trying very hard not to be a nuisance. What they hear is simply "I can come in sometimes..."

But you don't win brownie points for trying to do your share and request as little help as possible. It's frustrating, but that's how it is.

~~~

*facepalm*

Jun. 16th, 2008 04:52 pm
splodgenoodles: (Default)
I think I just got fobbed off. Mind you, the librarian in question was probably about to leave for the day.

I'm after some books either as inter-library loans or purchase requests if the library decides they're worth purchasing. At the moment, a trip to the library is not on the menu. But I figured if I could get the ball rolling then once they arrived I'd have a window of a few days to either pick them up myself if I could, or failing that to see if 10B could get them for me.

My local library says that you have to come in in person to do inter-library loan requests. I rang up and explained that disability makes this a bit of a challenge and asked if I could do it over the phone.

Yes no problem.

But then after all that, when it had been determined that the items weren't in the collection (I'd already checked online but I do understand they need to double check), and some of these items were in fact put in as purchase requests, I was told that it was all okay, and now I'd just need to come in now and fill out the interlibrary loan forms, and it would be fine because it only takes a couple of minutes to do that...

I dithered and re-explained that this was difficult and that's why I was ringing. She then said something I couldn't really follow about how things sit in folders for a couple of weeks and then get thrown out. And then she thought for a moment and suddenly brightened up and suggested maybe I should send an email explaining my situation and listing the books I was after. But that that should be my idea and not hers (uh...what?).

~~~

It's possibly that I made the fatal mistake of saying that *sometimes* I can get into the library (but that it's difficult - and two trips, to fill in forms and later to pick up books, is a big effort). Better to simply say 'disabled', no ifs or buts, no compromise positions - no attempts to meet people halfway. No 'if I can order these, my husband can pick them up...or maybe I can if I've got a window of a few days.' The moment you acknowledge that you aren't completely helpless you risk losing any help at all.

The problem, I think, is that people don't get that when I say "I can come in sometimes, but it's difficult" I'm essentially trying to meet them halfway and trying very hard not to be a nuisance. What they hear is simply "I can come in sometimes..."

But you don't win brownie points for trying to do your share and request as little help as possible. It's frustrating, but that's how it is.

~~~

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