In recognition of Scope’s “See the Person” week I have decided to do a little initiative of my own.

As somebody with a severe physical disability I hope to make it easier for people who still have trouble when confronted by somebody like myself.

Some people still have a lot of trouble speaking to people with a disability. Younger people generally do not have this problem as more and more people with disabilities are in mainstream schools. You also see people with disabilities out in the community.

30 years ago the world simply wasn’t like this. People with disabilities were sent to special schools even people with physical disabilities. They were also sent to live at institutions where they were kept safely isolated from the rest of the community. People with disabilities who did live at home were encouraged to stay at home. Those that did venture out met with constant staring, verbal abuse and outright discrimination.

The rights of people with disabilities has come a long way in those 30 years. There is a much greater understanding of disability, but confusion still remains. Should you use the word handicapped or disabled? (I don’t understand the difference myself.) Many are terribly afraid of offending a disabled person often to the point of being unable to speak to a disabled person.

Disabled people have an undeserved reputation for being easily offended. I believe this is because some people feel they need to make conversation whenever they come across somebody with a disability. It is easy to forget that you ignore the vast majority of people only speaking to them when you need to. Why is this rule forgotten when faced with disability?

It is easy to get a little snappy when you have been told, “you drive well”, or “nice wheelchair” or “you’re speedy” or “where are your L plates?” for the hundredth time that day. It is also terribly irritating for people to use an assumed nickname like, “Wheels”. When you see somebody with an incredibly large nose do you say, “how is your nose today?” or “nobody knows nose” or “you must smell good”?

Doing the right thing around people with disabilities is damn easy. Simply treat them exactly as you would another person because that is exactly what somebody with a disability is – a normal everyday person.

If you don’t know whether or not to open the door for someone in a wheelchair just remember the same roles of common courtesy apply to disabled people. If somebody looks like they are having trouble with a door, like if their arms are full of shopping bags, you would help – the same rules apply.

It has happened to friends of mine where they have opened the door for somebody with a disability and have been unfairly attacked verbally by the disabled person, “do I look like I need help etc” Just remember there is never anything wrong with offering help and if somebody has a problem with that is their problem not yours.

The thing about disability which makes it different from other minorities is anyone could join it at any moment. You could be hit by a car or have a stroke you could catch an illness that paralyses you or you could grow old. Disability completely ignores race religion and financial status.

I hope I have helped.

Do ‘Family Values’ Weaken Families?

The answer is apparently yes – as I suspected.

Part I | Part II | Part III

I decided the best thing to do was to stay silent and hopefully Andy would forget I even existed. Andy’s delusions were becoming increasingly elaborate. Phil turned out to be his former best friend and housemate. Andy was now in the magistrates court and everybody in the ward was a character in this delusion.

For example the urinal bottle was now a jug of water and Andy would periodically fill his glass… from the urinal bottle – much to the nurses’ distress. Psych Guy 2 was letting Andy wander around the room. And he accused one of the other men in the room of stealing his mobile phone the only problem was the mobile phone was the controller for the TV.

Here I was in bed with the covers over my head (that’s how I like to sleep) I am unable to move at all and there is a potentially violent crazy person wandering around the room. Most of what I’ve described above is put together simply from what I heard.

I must have drifted off to sleep, because the next thing I remember is Andy yelling at me right next to my bed. All he would need to do is reach out and disconnect the hose from my ventilator (this properly wouldn’t kill me as I can breathe a little on my own) or worse throttle me.

I was too busy freaking out to actually hear anything he was saying. Although I was calmer than I thought I would be in this situation.

Me: Look I am not Phil. You have got me confused with somebody else. I do not owe you $70,000.

Andy: Bull-fucking-shit, You Bastard!

This seemed to wake psych guy two up and he managed with great difficulty to wrestle Andy back into bed. I immediately tried to call out the nurse with zero response. I’ve waited five minutes and called out again…no response.

Andy was walking around the room again and thankfully was choosing some of the other residents to pick on. The others were very sick, but at least they had a chance of defending themselves. He got into an argument with the guy next to me and the guy told told him to piss off. On his way back through the bed he grabbed hold of the foot of my bed and gave a shake. This gave me a hell of a fright, what was he to do next push me out of bed?

I was still yelling out the nurses every five minutes and I still had no response. I asked one of the other guys in the room to press their buzzer. To my astonishment they all refused.

Cancer Dude One: why don’t you just shut up?

Me: I… by haven’t you heard what I explain to Andy? I can’t move this is the only way I could call out. For fuck Sake (I said this last part quietly)

I have experienced this before, when a weaker person is being picked on by a bully people will often side with a bully rather than stick up for the weaker person-especially if that person is irritating. Eventually Psych Guy Two saw what was happening and pressed my buzzer for me.

About 10 minutes later a nurse finally came in. The relief I felt was like nothing I’d ever felt before it was actually a few moments before I was able to speak. Almost suppressed fear and paranoia threatened to bubble to the surface.

Me: somebody is threatening me.

Nurse One: Who?

Me: Andy.

Nurse One: Andy is harmless.

Me: try telling Andy that. He has been wandering around shaking my bed arguing with everybody and he thinks that I owe him $70,000. Do you understand why I am scared?

Nurse One: Jesus. We will have to get you out of this room.

Finally my nightmare was over. Five minutes after this my stepdad and friend arrived. Andy went completely off the deep end. He kept screaming out for the magistrate. Andy was now had a nightmare of his own. The most stressful part of his life was being replayed in his head, it had something to do with his former best friend Phil and the $70,000.

Eventually he became violent and the nurses were first to call a code grey. Three large men came into the room picked him up and held on to the bed and while they strapped him down and injected him with a sedative. This should have been enough to put an elephant to sleep but Andy was still straining against the restraints and screaming at much reduced volume.

I was moved to a new room and then finally to a new ward. I don’t feel any anger towards Andy as he was sick and it would be really difficult to be in his position. I am a little angry at the Austin hospital, somebody like him should be in a psychiatric ward or at least a private room where he is unable to threaten other patients. I was very angry at the government of Victoria government as there obviously is not enough psychiatric beds and they should fund more of them.

The Austin has probably saved my life on more than one occasion all the staff are usually very good and overall they do a good job. It is just a shame that this episode has shaken my faith in this hospital.

Part I | Part II | Part III

Part I | Part II | Part III

It was almost 1 o’clock in the morning and eventually I got to sleep. I was woken by an argument coming from the cubicle across from me. It seemed the man, Andy, (name changed) in this bed wished to escape. He had another man sitting next to him whose sole job was to keep Andy in his bed. I’m not sure what his name or job title was so we will just call him Psych Guy 1.

It was a little like this:

Andy: It’s not a prison. I pay the rent, I can leave whenever I want.

Psych Guy 1: No you can’t. You are in the Austin hospital and you are very sick.

Andy: That’s bullshit. [Sounds of struggle] YOU BASTARD! Let me go.

Psych Guy 1: You’re an involuntary patient. You have a serious infection and you’re not thinking straight.

Andy: You can’t keep me in here.

Andy tries to climb out of bed, brief struggle ensues, Psych Guy 1 proves to be stronger.

Psych Guy 1: Look, it’s three o’clock in the morning. The buses aren’t running at this time and nowhere is open. Can’t you wait until morning? And look you can watch TV.

Psych Guy 1 turns on the TV. Surprisingly, this seems to work and Andy shuts up until about five AM. Meanwhile, I have been regularly calling out to the nurses as the ward did not have a call button that I could use.

There is a changeover in the nursing staff and Psych Guy 2 takes over from Psych Guy 1. Andy starts giving me an increasing amount of crap about me calling out. Eventually, he gets quite abusive.

Andy: Stop whingeing you bastard.

Me: I’m just calling out to the nurse. I can’t use the buzzer. I’m sorry if I have disturbed you.

Andy: Arsehole.

Me: I have Duchenne muscular dystrophy, I can’t move, this is the only way I can get the nurses attention, sorry.

Andy: Damn thief.

Thief? This conversation had taken a bizarre turn. Part of me was wondering whether he was a fundamentalist libertarian who believed that seriously disabled people don’t deserve respect because they are a drain on the economy – no that couldn’t possibly be it. Things go missing in hospital all the time maybe he was just looking for a convenient person to blame for his missing socks.

Me: I can’t move. I could not possibly have stolen anything from you.

Andy: That’s crap Phil. It wasn’t just anything it was money.

Phil? Interesting. Was he addressing somebody else? No, he was definitely answering me. Maybe he calls people Phil as a term of endearment, or if he doesn’t know their name? And what about the money?

Me: Do I owe you money?

Andy: Yes.

I was thinking that maybe his wallet went missing and he was short a maximum of 50 bucks. If he threatened me maybe it would be easier just to pay him off, well it was an option anyway.

Me: How much do I owe you?

Andy: 60 or 70 thousand dollars.

Holy fuck. He’s going to kill me. I must be like a character in his delusion. If you thought somebody had stolen $70,000 off you and they were just lying there… would you get violent? Some probably wouldn’t, but a large percentage would and Andy wasn’t exactly the sanest person around. Only Psych Guy 2 stood between me and certain death. The only problem was Psych Guy 2 just wasn’t as competent as Psych Guy 1.

End of part II

Part I | Part II | Part III

Part I | Part II | Part III

On March 10 I told you all that I had been in hospital due to some partially failed surgery. While I was in there I had quite an adventure. I was stabbed, jabbed and almost killed by one of the other inmates. This is a long story so I will splitting it into three parts.

I don’t really like talking about my health on this blog. In particular I don’t like talking about my PEG tube. This is a tube goes directly into your stomach kind of like a second plastic belly button.

I don’t like talking about it because it is a bit yucky. I also don’t want pathetic people who are in denial that their lives suck and who try to find others they think are worse off than them so they can make themselves feel better by making sympathetic noises, thinking, “Poor Chris. He gets fed through a tube. Can you believe that? His life must be so hard. He’s so brave…etc.” I have this tube because I have muscular dystrophy and have difficulty swallowing solid food. The good thing is I can still drink alcohol, so I retain my Australian citizenship.

I have had my PEG tube for almost 10 years and for nine of them it has had an intermittent leak. My surgery on February 24 was to re-site my PEG tube. They pulled out the old one and inserted a new one in a new hole 8 cm away from the old one. The old hole was supposed to close over in about a week, but it never did. Almost everything that was poured into the new PEG immediately flowed out of the old hole.

Eventually I got so dehydrated I needed to go back to hospital via ambulance.

The good thing about going to hospital in an ambulance is you skip all the waiting around in casualty (apparently, this isn’t always the case, but it has always worked out this way for me).

I had a really hot nurse and she managed to put the drip in my arm first shot. After a few hours I spoke to the doctor half an hour later I was sent up to the ward. So far so good, but it was all downhill from here. The only spare bed was in the cancer ward, which is in the old building at the Austin. This is the only active ward in the old building giving it an abandoned haunted creepy feeling.

End of Part I

Part I | Part II | Part III

On Catalyst last night there was a segment about Duchenne Muscular Dystrophy and the trial of a new potential new treatment. It is what’s called an exon skipping drug that is supposed to assist in the production of a missing protein called dystrophin.

Anyway, I did not want to speak about the trial in this post.

All the way through this segment they were talking about how there is no treatment no hope and that anybody with Duchenne muscular dystrophy is pretty much going to die around the age of 20.

I am currently 32 and went into a wheelchair even earlier than some of those in the segment. The reason that I am alive is because of a treatment – nasal ventilation. You see, the reason why a large number of people with muscular dystrophy die young is because of respiratory failure. Nasal ventilation is a proven treatment that can keep somebody with my condition alive.

There are always hopes of new treatments. Stem cell therapy for example. Most of these are on the distant horizon the trick here is to stay alive long enough so you are able to have these treatments.

I thought that last night’s segment was the perfect opportunity to show that there is a proven treatment and there is hope. We need to make sure there is awareness of ventilation as a treatment for muscular dystrophy otherwise people die needlessly. All I would ask is 10 seconds just to mention it.

It is good to finally see a segment about Duchenne muscular dystrophy on national television, but I feel the ABC could have gone just that one step further.

Parents need to hear that having muscular dystrophy is not necessarily a death sentence. There is hope.

Tony Abbott’s suggestion that the dole should be limited to those above the age of 30 is probably the most ridiculous idea to come out of his mouth. It sounds like a cynical vote winning exercise and judging by some of the comments on the article in the Australian he may have succeeded.

For one thing it is discrimination. If you can’t get a job, you don’t have any money and you can’t get the dole what are your options? You could try mooching off friends and family, but that isn’t a very good long-term plan. Of course you could always give crime a go.

Tony Abbott’s idea is the perfect way of increasing the crime rate and probably the homeless rate as well.

It’s not like we have an enormous unemployment rate. Being a dole bludger is it as easy as it used to be there is the work for the dole program and you are constantly being checked up upon by centre link.

I am not sure if it is possible to get the unemployment rate below 5% with the modern workforce the way it is. There is a constant shift of people changing jobs. There is also a large number of people every year ending education. And don’t forget the people changing from part-time work to full-time work. Not to mention all the businesses that are packing up and moving to China. There will always be some people who are between jobs and most of these people will be under 30.

There seems to be a tendency of our national government to pick on the less fortunate in our society. Young people on the dole have always been a target – just watch an episode of A Current Affair. We all have some elderly relative who is always carrying on about the “young people of today” and those “filthy dole bludgers’.

The list of minorities discriminated against by the government appears to be growing homosexuals, refugees and now young people. Being a member of a minority I’m a little worried. Bring on the bully state.

I went to see Arj Barker last night with my brother and a few friends. He was pretty funny, but not outright hilarious. He tends to take a long time to set up jokes, but the dividend is usually worth it. In the middle of his routine it was a little unfunny, but towards the end he was funny again. So overall I would give it about 3.5/5.

There was one part of his routine that really made me think though. He has this theory Always Question Unjustified Authority or AQUA for short. I think for the sake of this discussion we could ignore our 10 foot tall reptilian overlords or the fact that Arj thinks we should take a dump in public to demonstrate our rejection of unjustified authority.

Arj does have a point though. We are told what to do almost every waking minute of our lives. We are told what to believe, what to eat and what we can and can’t do. But who gives these people the authority to tell us what to do? We live in a democracy, but how often do we practice it? Someone is always a designated leader we never work out what we should do as a group and do that.

I think the major criticism of democracy is that it is only every three years that we get to make a decision about our government. And then we are only selecting among a bunch of people we don’t even know. We don’t even have a say about policy. Yes we do have a stable government, yes they do a reasonably good job and we have the rule of law. But essentially we still live in a dictatorship.

For example the majority of Australians believe euthanasia should be an option for terminally ill patients. But will that ever get through the Australian Parliament or any Parliament? The federal government even prevented the Northern Territory from exercising its euthanasia legislation. The majority of Australians probably believe that homosexuals should be allowed to get married – with a christen as prime minister that will never happen.

With the Internet becoming a large part of our culture it is time to think about using it to make democracy work better. Countries such as Switzerland already have a limited form of direct democracy where the populace can decide on legislation through referendum. E-democracy is the use of electronic tools through the Internet to participate in the democratic process.

I think it would be great to be able to propose legislation and decide on it electronically. Of course there are some potential risks everybody following some demagogue or tyranny of the masses with minorities being seriously screwed over. But with an educated population and, hopefully, with ignorant fools not bothering to vote it could work.

It is about bloody time we exercised some control over our lives.

Over the next few weeks I might start work on writing my own constitution that uses direct e-democracy and who knows maybe I could use it in one of my science fiction stories.

The release of that video by WikiLeaks that shows two Routers journalists being killed by an Apache gunship has seriously stirred up the blogosphere. The Right Wing Death Beast’s (RWDB) are on the defence with the lefties on the attack.

The response of some on the right has been extreme and in some cases laughable. Some on the right seem to believe that they have the right to offend as well. This is a snippet of a comment left on An Onymous Lefty. Splatterbottom was responding to Jeremy Sear’s article that dared to criticise the US Army’s rules of engagement.

Here is my response. I was angry and I didn’t really think before posting.

That’s the problem with you right wing fucks. You think the most disgusting revolting things and then have the nerve to type them and stick them up on the net for the world to see. You are a sick fuck. What would your mother think?

And then you have the nerve to crap on about morals and decency. I’m not sure you know what you believe. You just want to piss people off – constantly giving a contrary opinion even if what the person is saying makes perfect sense.

I am not attacking your freedom of speech you have every right to say what you do and I would fight for your right to do so. But do you have to lower the discussion to this level?

And if you have such a problem with what Jeremy has to say WHY THE FUCK ARE YOU HERE?

Yes, I was a bit self-righteous. And I have to apologise to Voltaire for borrowing that freedom of speech line. I can be revolting too and have been. But when somebody is trying to have civilised discussion surely it is common decency to keep the discussion on a civilised level. I am sure Splatterbottom thought what he wrote was hilarious and it was creative, but sometimes it is best to keep this sort of thing to yourself.

RWDB’s have a long history of saying rude, inappropriate, revolting things at the totally wrong time. I’ve been called all sorts of things most of them expressed in that eloquently repulsive way displayed in the quote above.

I’ve been banned, threatened, made an item of ridicule and had it suggested that all lefties should be lined up against the wall and shot. In every case the only thing I did wrong was express an opinion that was contrary to the post author’s opinion.

And then they go and talk about morals and freedom of speech. Hypocrisy! Do RWDB sign some sort of Hypocritic oath?

In the US the RWDB’s went berserk in 2008 when the US Supreme Court upheld the right of habeas corpus for Guantánamo Bay detainees. Habeas Corpus is a basic human right designed to stop people spending their entire lives in jail without trial. It is a foundation of the rule of law believed in by the signers of the declaration of Independence and the writers of the US Constitution.

So essentially these RWDB were shitting all over the constitution they profess to love wholeheartedly.

And if you disagree with me try arguing with Benjamin Franklin:

They who can give up essential liberty to obtain a little temporary safety, deserve neither liberty nor safety.

Well it turns out the actual surgery was not that bad. In fact it didn’t hurt at all and the drugs were fantastic. The recovery however…

I managed to get a throat and chest infection the day after the surgery. This and a few other issues delayed my recovery.

Anyway, I’m back blogging.