Monday, 17 February 2014

The WB Standard

Last year I moaned about why I hate Valentine's Day. This year I decided to do it on social media.
Because I haven't met anyone who has the brains of Doris Kearns Goodwin, the artistry of Joan Didion and the looks of Kristen Stewart you love birds make me sick, and also a tiny bit jealous.
For the past two years my friend Nikki and I have formed a pact of sorts: to be each other's valentine. I gave her some awesome books on atheism last year. Part of this pact stemmed from contradictory emotions we shared, loathing the sentiment of the day, but we felt bound by our mutual loneliness.

Lorenz and Hart tell us that 'each day is Valentine's Day', but if it were, I would want to shoot myself, because the day has turned into an excuse to rub your happiness in other people's faces. Maybe I'm too cyncial, or maybe I am the opposite.

A few weeks ago I finished my third viewing of the family drama Everwood, a wonderfully underrated story about life, death, the bonds of family, and of course first love. Sublimely written, and acted, I would recommend the series to anyone. I come for the writing, I stay for Amy Abbott, the heroine of the series. She's everything I wanted in a girl when I was 16: smart, beautiful, earnest and witty. Oh, Amy, if only I could play piano like Ephram!

Amy is only one in a long line of WB women. There's Joey Potter, Rory Gilmore and Peyton Sawyer too. All play the same archetype: vulnerable, smart, good looking and oh so literate. See the problem here for a future mate is that all these fictional characters set a far too high standard compared with reality. Some smart people would say that it is just another excuse to avoid getting hurt.

And I suppose that's true. Many years ago when I was at the height of my first love (non reciprocated) a mutual friend of her and I said something I have never forgotten.

To expect is to demand, and demanding can only lead to disappointment. Don't demand, don't expect, just let it happen.

Wise advice. Pity I never bothered taking it.

Thursday, 13 February 2014

Do I Make You Feel Uncomfortable?

Lately I have taken part in some conversations which have led me to conclude that absolutely no one likes an angry cripple. My antipathy towards my disability has been well documented, and now that I have been healthy again for well over a year I can say with certainty that my physical disability is by far the worst thing in my life. It's not even close.

I hate it with a passion you cannot even comprehend.

But if you walk that is not what you want to hear. How do I know this? It is because that every time I express visceral hatred about my disability, your kind tries to talk me out of it. But look at what you can do, you are so much smarter than many who can walk! Well thanks, but that is not the point. The customary cliche crippled folk like to use is to ask you to spend a day in a wheelchair. Sorry walkies, but a day isn't enough. Try a lifetime.

It is not totally your fault. After all, the mainstream media teaches you that there are only a few disabled people who are 'successful'. Despite being a crip, do you know what else they have in common? They are all members of the disability pride brigade. From the savvy and smart, to the plain condescending, and finally the most annoying category, the athletic martyrs, these people all tell the world that they LOOOOVE their disability. If a walkie suggested that life might just be a little bit tougher because they are disabled, they cry 'ableism'. Of course, how individuals respond to their own disability is up to them, but the fact that the other side of the argument is hardly presented at all really, really does my head in.

The person who can walk needs a balanced portrayal of what life is like having a physical disability. It should be okay for me to tell you that day to day life is a constant stream of hardship, because it is. And you know what? It is healthy for me to tell you this. I spent 27 years trying to repress my anger on the subject. It led me to bad places and a ton of bad decisions.

Part of this was due to the fact that I was conditioned, both consciously and sub-conciously, to tell walkies that I was 'lucky' by comparison. While part of that is correct, let's deal with some brutal truth here. I was also incredibly unlucky. Through no fault of any one person, and for some reason that won't be discovered in my lifetime, not quite enough oxygen entered my brain during a crucial stage of my gestation. I blame no one. I was just unlucky.

However, I am extraordinarily lucky that I have two parents that transformed me from a diagnosed 'vegetable', to someone who aims to be a psudo-intellectual. None of this anger is directed at them, nor will it ever be. They should be (and are) proud of every decision they have ever made when it comes to my upbringing. But at the same time they have the right to be upset at the hand they have been dealt too, if they choose to be. Sometimes they are. Sometimes they are not.

I do not expect you to understand how difficult my life is. Fortunately, you will never be able to. These are my issues. And this is my anger. Just because I choose to express this anger and wish my life was never this way, it doesn't mean that I want to die. I have a lot of unfinished business. But I'm not anyone's miracle either.

When people ask me about my disability, I tell them this.

I make the most out of a very bad situation    

Wednesday, 12 February 2014

Philip Seymour Hoffman Has Left The Stage

"Think of how many Hoffman performances are memorable because you don't want to think about them for long because they make you uncomfortable, not in that phony undergraduate drama student sense, but because they tease out some buried truth about humanity, maybe about you in particular, often within the context of a character you never expected to connect with, much less identify with." Matt Zoller Seitz


A towering figure in life and acting Philip Seymour Hoffman died 9 days ago, and yet many already feel his loss permeating through the past, present and potential of film making. Hoffman had a omnipresent career for the past 15 years, I never got tired of seeing him.

During the last week of 2013 I saw Hoffman in two of his more recent films: A Late Quartet and The Master. Two more different films you could not find. In the former he plays a violin player who is repressed in every sense of the word, emotionally, professionally and sexually. Watching that performance is an exercise in restraint, as Hoffman's character Robert Gelbert slowly combusts from the inside. In The Master, Hoffman plays Lancaster Dodd in which he essentially channels Jim Jones, both in charismatic and maniacal ways. Hoffman oozes arrogance onscreen in a way he never did before. Though I have seen almost all of Hoffman's films, it is in The Master that he gives my favourite performance.

Almost all the obituaries have highlighted Hoffman's tendency to play outsiders. Whilst this is true in some cases (most notably in his other collaborations with Paul Thomas Anderson) I think this characterisation does him a disservice. In The Ides of March Hoffman plays the ultimate insider, as the campaign manager for the slick politician Mike Morris, played by George Clooney. Hoffman's performance is centred around the Machiavellian cynicism that I have confronted in all of my political life. The difference in Paul Zara, (Hoffman's character) is that you get the sense that while he enjoys the thrills of political oneupmanship, he has no idea what he believes in anymore. His final scene with Stephen Myers (Ryan Gosling) in particular, unpacks everything you thought you knew about the character and reveals true despair and emptiness. Paul laments a wasted life.

Hoffman was certainly the greatest actor of Generation X. His ability to inhabit complex characters remains unmatched. Even when he appeared in material that was beneath his vast talents, you always had to look twice. He was not a villian for the sake of it, there was always a deep emotional resonance that contributed to the character's dastardly behaviour.

The tragedy of Phillip Seymour Hoffman is not that he has left us, but that he do so far too soon. I think he would have made a great Teddy Roosevelt in my imagined biopic. And he would have grown old gracefully while rewarding us artistically, like another recently departed thespian, Peter O'Toole. His Oscar winning turn as Truman Capote may be Hoffman's most obvious legacy, but to me his ability to play every kind of emotion will always stand the test of time.

Saturday, 8 February 2014

From Hope to Despair: The NDIS and the Battle for Individuals to Advocate

Three years ago this month an article I wrote on the failures of the proposed National Disability Insurance Scheme (NDIS) was published on ABC RampUp. I had attended an 'information session' designed to inform carers and people with a disability about what the new scheme would entail. There was no information, just propaganda. From then on I began an angry quest to stop the NDIS.

And I failed.

When the legislation was passed through both houses of the Australian Parliament, Julia Gillard considered it to be one of her greatest achievements as Prime Minister. I say that it was her worst. The reality was that the institutional power was always against those who opposed the NDIS. When the NDIS became law, it was said that many cried with joy. I cried tears, lots of them, because I was scared and terrified. I believed that the NDIS would be the tool to disempower hundreds of thousands of people with disabilities, all in the guise of helping us. I remember talking with my parents. 'We are going to get screwed, and no one understands! How do I make them understand?'

Even I underestimated the devastating effects of the NDIS and it hasn't been implemented yet.

Wesley Mission gave me the opportunity to attend Griffith University's NDIS Symposium on Monday (the 3rd of February). It was an all day conference, designed to give various aspects of the disability sector the opportunity to discuss the tools that they need to ensure that they are ready for the NDIS. It was not a pleasant day in the slightest. I was angry going into the conference, I left in helpless disbelief.

Throughout the day, the majority of the 200 attendees and all of the speakers seemed to be in a trance like state. 'The NDIS is the best thing to happen to the disability sector in decades!' they would say. Yet not one of the speakers gave an explanation as to why. Instead they voiced the same concerns that I have expressed over the past three years. This is not me gloating. I take no pleasure in saying any of this.

The most interesting and insightful session was the first on eligibility. The Government Senator responsible for the NDIS rollout, Mitch Fifield suggested in his National Press Club Address in November last year that the NDIS would cover 450,000 Australians with a disability. However according to the Australian Bureau of Statistics there are 2 million people with disabilities. What happens to the other 1.5 million who don't fall under the purview of the NDIS? To me this is the most basic question of the whole conference.

It was left unanswered.

The question of who is not covered under the NDIS is a vexing one. If a person with a permanent disability is over 65 by the time the scheme is implemented in their state, they will not be covered under the NDIS, and they will instead be part of the Department of Aged Care, denying them access to auxiliary services on top of their care needs.

It is even worse for those who have a mental illness. According Caroline Earlich, Senior Research Fellow of the Griffith University Health Institute, of the 429,000 of those in Australia who are considered to have a 'serious mental illness', only 60,000 will be covered under the NDIS. She stated that the requirement of the NDIS that participants must have a 'permanent' disability is problematic when defining mental illness. The paradox is this: the people with a mental illness who require the most support (eg homeless, disenfranchised, or the most at risk of self harm) will receive the least amount of support.

Currently there are three trail sites for the NDIS. These sites are located in the Geelong region of Victoria, the Hunter region in New South Wales, and for children who live in South Australia. The issues that these trial sites have confronted are staggeringly obvious for those of us who have had any experience with disability bureaucracy. On an organisational level, the conference speakers repeatedly touted the employment opportunities for people to access in the newly formed National Disability Insurance Agency (NDIA), the body responsible for assessing applicants, and maintaining the case files of those who are successful. This undermines the very purpose of the scheme. Assessing the needs of those with a disability to fit government funding models is a highly skilled and complex process (more on that below). If applicants are not assessed correctly, they will not get access or the support services they require. If this is the case, you may as well ditch the scheme entirely. At minimum, those who aim to work with the NDIA should have tertiary qualifications in disability services, and ideally have experience in the field. Failure to do this will result in a 'pink bat' type of situation for the disabled, where ill-equipped operators will be able to gain access to employment without the necessary skills to help those with disability, thereby putting them in grave danger.  

For people with disabilities, the assessment process and its outcomes spell danger for us all. Presenters from Griffith University and those within the disability sector, repeatedly cited statistics from the trial sites which indicated a correlation between intellectual and verbal ability and their opportunity to gain access to services.

Put simply: if a person has no skills to advocate for their own needs, it is highly unlikely they will have the opportunity to access the necessary services that they require.

This is the trouble with a person based advocating system, as promoted under the NDIS for people who lack basic comprehension skills. How on earth will you be able to 'advocate' for what you (or your carer/guardian/caregiver) needs when you don't understand the information that is provided?

Again no answers were provided.

On a personal level, I am worried about my own future. The services that are provided to me at the Youngcare Apartments are based on a model called 'block funding'. The aim of block funding is to pool the resources of a certain group of people so they can access the support funding they need in a cost effective fashion. I would (with an uneducated estimate) guess that the person with the most needs in terms of support at Youngcare would cost the Queensland Government upwards of $2 million a year. There are others who would cost more than $1 million a year. No government would give those amounts of funding to a single personal (or their advocate) so they can allocate their funding how they wish. There are just too many risks. Therefore, 'block funding' says in Youngcare's case, that if I put my funding in a pool with the 16 other residents, we will be able to combine our collective resources and get access to around the clock support.

In other words, it is a free marketer's wet dream.

Opponents of block funding suggest that it undermines the ability for people with disabilities to choose how they want their support services allocated. While this is true in some cases, the argument misses the bigger picture. One of the presenters at the conference, Dr Donna McDonald, Senior Lecturer and Convenor of the Disability Studies Program at Griffith University (who also is hearing impaired with a ton personal experience in the sector) labelled block funding, 'draconian' for the very reasons highlighted above. When I directly challenged her as to whether this was an economic or moral response, she unsurprisingly answered the latter. While I'm sure Dr. McDonald is a powerful advocate on her own behalf, she fails to understand that block funding is the only method in which I have ever received the appropriate amount of support, and I'm not the only one. Block funding is my choice, and the majority of those who advocate for Youngcare. Block funding may not be the answer for Dr McDonald, but it is for us. While the great majority of the Conference delegates appeared to share Dr McDonald's view, the Government has yet to decide whether a block funding structure will be an option for those who want it under the NDIS.

I have resigned myself to the fact that the NDIS is here to stay. Rather than take on the huge despairing monolith that the NDIS has become. I aim to ensure that block funding is an option for those who want it, and for those who don't even realise they want it yet, but will one day realise that they will.

I may have lost the war, but I will never give up the passion for this battle.     

Saturday, 1 February 2014

'Her' & The Evolution of Online Romance

'Love is crazy. Love is a socially acceptable form of insanity.'

'You always wanted a wife without the challenge of wanting to find someone... its perfect.'



Her, though nominated for a bunch of Academy Awards is not the type of movie that will win any prestigious prizes. It is not a film with a significant political message, nor does it have a happy ending. Marketed as a quirky romance, the heart of the film is angry and disaffected. As more and more people turn to the internet for dating there is a particular emotional resonance throughout the movie that will appeal to lots of people. Her may be set in the not too distant future, but it is very much film of its time.
Theodore is a lonely man in the final stages of his divorce. When he's not working as a letter writer, his down time is spent playing video games and occasionally hanging out with friends. He decides to purchase the new OS1, which is advertised as the world's first artificially intelligent operating system, "It's not just an operating system, it's a consciousness," the ad states. Theodore quickly finds himself drawn in with Samantha, the voice behind his OS1. As they start spending time together they grow closer and closer and eventually find themselves in love. Having fallen in love with his OS, Theodore finds himself dealing with feelings of both great joy and doubt. As an OS, Samantha has powerful intelligence that she uses to help Theodore in ways others hadn't, but how does she help him deal with his inner conflict of being in love with an OS?
Her is perhaps the very definition of a critical darling with respected film critics giving it near universal acclaim. The film has been on their radar since 2012, when noted film critic, Mark Harris tracked the film through pre and post-production, in amongst storyline tweaks and casting changes. Her seems a natural fit for the cinefile who loves to over intellectualise, but this film has stayed with me during a four week period, and through two viewings for other reasons.

I have been involved in three online relationships. In my early 20s, I had never experienced any form of relationship, let alone one conducted online, so I thought such relationships had the advantage of 'looking past' my disability, where a desirable female would have the opportunity to get to know me first (and possibly fall in love) before I revealed my worst characteristic at a time of my own choosing.

The only thing the two parties can rely upon in an online relationship is their words. This is a double-edged sword, words can either act as the most profound form of love, or act as the mostly deadly weapons with which to vanquish the most stable relationship. Her makes clear throughout the movie that Samantha never was, and never will be human. However, the same rules apply for her and Theodore as they did to me and my objects of affection. For this reason, the film catalogues the joyous, sexy, happy, painful and bloody carnage of my past online relationships in all their complexity.

Loneliness.

In order to even comprehend the possibility of starting an strictly online relationship, both parties have to be desperately lonely, whether they admit this to themselves (and each other) or not. Typically, one that considers an all verbal relationship will be introverted, and more often than not have severe psychological and emotional issues underlining this tendency. This dooms the relationship before it begins.

Blank Canvass

The one advantage that an online relationship has over all others is that you can project the best version of yourself onto others. If your partner tells you about an interest that you are vaguely ambivalent about, you can type the subject into Google and act like you are an expert. Yes, this is considered to be lying, but you just want her to like you as much as you like her. You can also avoid topics that are too emotionally uncomfortable with a witty retort and the right choice of emoticon.

Isolation By Choice

The apex of the honeymoon exists when she is the only person in the known universe. Conversation on largely superfical topics lasts several days, even weeks or months. You begin to approximate physical intimacy, and at the time this satisfies you because you have tunnel vision and think that she is the only girl who sees you for who you are and vice versa. Those little white lies are meaningless. You neglect your other friends and family. When you do see them conversational topics consist of her alone. These people tell you to be careful with your heart, but you have developed myopic hearing.

Comfort

The two parties supposedly know each other intimately by now. Well past the honeymoon stage, the only thing they have in common is routine, and the relationship is reduced to stilted conversation about menial topics that provide no insight into feelings or emotions. You begin to wonder in the back of your mind where the spark went, but you tell yourself that the medium is the problem and not the personalities.

The Unveiling

In an attempt to salvage a decaying relationship, you encourage your friends to interact with her. To make things easier, you may invite them into your online conversations so your sliences aren't quite so prolonged. Your friends being the good people they are tell you that they really like her, but they secretly (and justifiably) have conversations behind your back where your judgement is openly questioned. You begin to crave real physical intimacy and feel your approximation is nothing but an elaborate charade.

Trust Eroded

The silences kill you, where each quiet minute feels like a bomb going off in your chest. Only now you begin to realise there is a serious problem.  Discussions turn into arguments and she is not online when you are. Upon her return, you ask her where she has been, and she tells you. You think she is lying, but it doesn't matter if she is or not. You imagine her getting drunk at the local bar, half the world away, hooking up with her 'best friend'. And there right then the trust is gone. There is nothing left to salvage.

The End

On reflection, you don't deal with the problems that arose and you don't learn important lessons because it wasn't real anyway. You never kissed her, never fucked her. 'I love you' was just a sentence you kept repeating when there was nothing left to say, it had no real meaning. You look her up months later, only to find out she was doing the same thing with some other guy the whole time. This does not hurt because you are not surprised in the least. You are in the same place only with your heart a little more hardened. And you are lonely.

Maybe the next time won't be as bad?