Saturday, 30 July 2011

The Price of Freedom

This past Friday after 6 months of waiting I finally had an interview with Disability Services Queensland (DSQ). This meeting was designed to determine if I was eligible for funding that will hopefully contribute towards the cost of my personal care for when I move to Brisbane to live independently. Just so I am clear, I absolutely HAVE to get this funding if I wish to move out on my own.

How do you tell a perfectly nice stranger who is just doing their job what the price of your freedom is?

For readers here is a very general exercise: Add the following weekly tasks up.

1 How many times do you get up and go to bed?
2 How many times do you eat?
3 How many times do you go to the toilet?
4 How many times do you shop for food?
5 How many times do you do your washing?
6 How many times do you run general errands? (banking, posting letters etc)
7 How many times do you shower and/or get changed?
8 How many times do you clean your house?

Add all of those up and times the number by 10

That is (very, very roughly) how much funding in dollars I will need to live independently. Then times that amount by 52 and you get a yearly figure. Times that amount by (hopefully) 60 and you get a lifetime figure.

The accountants and bureaucrats of the world have just died simply by imagining the weight of those numbers.

Yet these figures represent the amount of money I need from the government or alternative sources just to function in daily society. Not to thrive, but just to survive. This is on top of basic costs that everyone else needs to pay for their rent, food, transport and all the other cost I have forgotten to factor in.

And I am just one man.

Looking at it from a completely unbiased point of view. What is the reason that I deserve all this money?

Is it on the off chance that one day if given the tools I might make a mark on this world?        
Is it out of compassion?
Is it because my circumstances are extraordinary?

Why should I get the money out of the thousands of other cripples who need it just as much, if not more than I do so they too can survive? Some don’t have my brains, my loving parents, my supportive environment and a million other things.

Yet if I don’t get this money I don’t know what the fuck I will do.

The price of my freedom will always be high. The question is who will pay?

Saturday, 23 July 2011

I Sit & I May Be Handsome

As discussed in previous blogs I am having trouble making the type of friends that I need. The people that I want to see regularly are the ones I don’t get the chance to see often. (Case in point most of the people I saw last weekend) In my innumerable hours of soul searching I concluded that I needed to make more friends. So how do I, the introverted cripple go about doing this? I go online to find new people. Unfortunately, because I’m looking for a new method besides hipster music message boards (tried that and failed spectacularly), or through general chatting (even more spectacular in its failure) I’ve had to try *shudder*…  dating sites.

Would I like a date or two? Why not. I think its time for me to move on, don’t you? Particularly if she had long straight black hair, fair skin, a couple of tattoos in secret places, liked to talk politics and history and had an awesome taste in music I would be first in line. That would be a nice bonus. But what I’d really, really like is some new friends. I have been advised to change things up so I took a risk and dived into the sociological cesspool that is the world of online dating.

Problem with the cesspool is that so many use the same lines over and over thinking that they are original. Most of the undesirables fall into two categories. The overly desperate who list their qualities for desirable men who must live up to ‘their’ standards, which invariably includes a twelve point checklist. The other category is the teenyboppers who are under 20 and still think they’re on Myspace circa 2007. I was just me, however. Of course I made sure to put my best assets up the top (my academic prowess and intelligence) but unlike others I also put my flaws in as well (over analysis and a shade of arrogance).

The dilemma for a crip is how to broach the subject of disability. I went with the direct approach. One dating website wanted people to come up with a one line ‘first impression’ to encourage clicks on your profile. I went with:

I'll take you on a wild ride. (And I do mean that literally.) I even supply my own vehicle.

Once the profile is clicked I approach my disability in a no fuss easy going manner:

I have Cerebral Palsy and am in an electric wheelchair: but don't let that put you off. I am the classic case of not judging a book by its cover. Obviously I can't do any hiking or rock climbing, but would you settle for a ride on the back of a wheelchair? Those looking for something unique might like to ask themselves:
When was the last time your date had his own parking spot?
When was the last time your date got free drinks for you every time he went out just because he sat on his arse?
When was the last time your date got the best spots at gigs?

(Yes, being a cripple does have its advantages!)

Two days in and I’m 0/2 on the reply scale. It is early, I know but currently I have a worse batting average than Courtney Walsh. I’m no Sachin Tendulkar, but I’d settle for Mitchell Johnson. It only takes one ball to hit a towering six.

Pray that I don’t get too dirty in the cesspool at least for my sake.

Thursday, 21 July 2011

126 Days

Trying to find what to write here next is causing me a great deal of stress.

I miss this place. I miss the freedom it gives me. It is a place that is mine. The (very few) readers come here on my terms. There is no other place on Earth that affords me such an opportunity. But, what the hell do I say?

I am still struggling. I am still in the grip of paralysing depression. I still miss my former life everyday. It continues to be my first thought when I wake up in the morning, and my last thought when I go to bed at night. Time does not heal.

I have recently returned to study. The zeal I had for it has yet to return. I am currently doing it because my leave has run out and I have no choice. I better get moving because I have only got two years left before the maximum deadline. I MUST finish this PhD otherwise the past decade or more will have been wasted. The only fear I have now is one of unfulfilled potential. If I am going to stick it out I have to do it right. Nobody else places this pressure on me. It is self inflicted.

The social side of things is far more complicated. In an occurrence that probably has not happened since 1992 I went out twice in two nights last weekend. I liked the company and caught up with most of the people I have been wanting to see since the shit hit the fan. Social situations prove tricky business because on most occasions they terrify me and I would much rather be here in the dark, alone. Yet I find the thing I miss the most is the intimacy of life. I miss having a best friend. I find myself wishing I could cut through the inane bullshit and get to the important stuff. I hate my contradictions. There are far too many. I make life too hard for myself.

The past year has been a war. I have returned a wounded soldier with lifelong scars, my life forever altered. So much has been repressed. I have seen both the joyful and the ugly side of life. I am trying to move past it all and yet I am still fermenting in my own pain. An innocent trigger sets it off. It is like the pain of guilt except there is no release like when the truth comes out. It is just there lodged in my chest, probably forever.

And yet I must go on searching for freedom and intimacy that I do not have, which I doubt will ever be achieved.

Wednesday, 6 July 2011

Disabled Discussion

Dear Cripples of the World: What the fuck is your problem?

Some would say the recent emergence of the Angry Cripple on The Punch, and my employer RampUp have opened up the debate on the disability sector. But they have actually made things worse. Rather than empowering the sector, debates have turned insidious, nasty and unhelpful. Furthermore, they have generated ignorant public discourse, which reverses the progressive leaps the sector has made in recent times.

Today’s piece care of the Angry Cripple, by an (yet another) anonymous crip echoes many of my own sentiments. It is realistic, pragmatic and speaks to many truths. Yet take a trip down to comments and you’ll find comments about inspirational crips who people know that are bright, cheerful and never ever, ever complain! Why can’t we all be like that? It is like a homophobe saying although they find gay sex repulsive, they are okay with it because they know a lesbian. The vitriol spewed fourth in the comments is reprehensible. It says a lot about this country that the most mainstream debate about disability in this country is owned by Uncle Rupert, which has commenters who suggest that their 'tax dollars' should not be given to those crips who are not bright, cheerful and thankful for what (little) they have. ‘Try a few days wiping people’s bums’, Simon the ever so insightful commenter says. This does not even deserve to be dignified with a response. Commenters have also directed venom at said author and suggested that they require professional help because they dare to be negative. This echoes comments expressed at my article on The Punch which advised me that I was subjected to child abuse by my parents because my views weren’t mainstream enough.

So what are the problems here?

The first is that the commentary on the disability sector is far too insular making discussions about disability almost pointless. Despite RampUp being hosted by our national broadcaster, it has only acted as a bigger cauldron to have the same tired debates. The same people comment and the same people write. New audiences aren’t contributing or reading. I’m sick of politicians spewing forth press releases disguised as opinion, I’m sick of ‘my experience' articles. And I’m sick of the same tired issues being debated over and over again. RampUp needs new audiences of people who know fuck all about disability to get educated and informed so there are less of the comments above. It doesn’t need me as a reader. I already know what needs to be done.

Second, the Angry Cripple is a blight on the discussions concerning the sector, If they were really interested in promoting discussion they would reveal themselves or simply stop. It did not help that today the Angry Cripple chose to juxtapose the plight of crips and carers in an adversarial manner. Furthermore, it doesn’t help that a column that is supposed to represent the unrepresented has had the egotistical zealot Sue O’Riley write her horseshit on three separate occasions when thousands of others with thousands of other disabilities (or caring experiences) have not had an opportunity to do so.

Third, the series of debates concerning the disability sector are framed in this adversarial manner, which is controlled by petty individuals and pointless policies. This in turn generates the ill informed debate, best represented by the Angry Cripple Columns. Has there been genuine debate over an NDIS? No, we are just told that we’re stuck with it because the appropriate channels for proper debate have not yet been constructed. We have not yet had an intelligent debate in this country about anything to do with disability. And it shows.

Disability policy is intellectual karma: we generate shit and it comes back to us ten fold.