Saturday, 31 December 2016

Best of 2016

TV

1. Orange is the New Black
2. American Crime 
3. The Girlfriend Experience
4. Gilmore Girls: A Year in the Life
5. Barracuda
6. The Good Wife
7. Speechless
8. Love
9. Netanyahu at War
10. House of Cards


Movies

1. La La Land
2. OJ: Made in America
3. All the Way
4. Deep Water: The Real Story
5. Carol
6. Confirmation
7. The Last Gold
8. Love & Friendship
9. Snowden
10. The Founder


Albums

1. Tegan and Sara: Love You to Death
2. Lily & Madeline: Keep it Together
3. Lisa Mitchell: Warriors
4. Marit Larsen: Joni Was Right (Parts I & II)
5. Jimmy Eat World: Integrity Blues
6. Carly Rae Jepson: Emotion Side B
7. Dami Im: Classic Carpenters
8. Foxes: All I Need
9. Solange: A Seat at the Table
10 Case/Lang/Veirs: Case/Lang/Veirs

Books (That I Read in 2016)

1. Justice Brennan: Liberal Champion: Seth Stern
2. Joe Cinque’s Consolation: Helen Garner
3. In the Shadow of FDR: William E Leuchtenburg
4. Chasing Shadows: The Life and Death of Peter Roebuck: Tim Lane
5. The Hopefuls: Jennifer Close
6. Pictures at a Revolution: Mark Harris
7. The Killing Season Uncut: Sarah Ferguson
8. Traitor to His Class: The Privileged and Radical Life of Franklin Delano Roosevelt: HW Brands
9. Scorpions: The Battles and Triumphs of FDR’s Great Supreme Court Justices: Noah Feldman
10. Justice For All: Earl Warren and the World He Made: Jim Newton.


Longform Journalism (In Chronological Order)

Winona, Forever
Britain’s First Modern Prime Minister
The Unbearable Sadness of Ben Affleck
This Election Could Be the Birth of a Trump-Sanders Constituency
How The Rest Of The World Caught Up To Tegan and Sara
Ten Years Without Jen
A True Hipster: Grant McLennon
The Ups and Downs of Jodie Foster’s Unconventional Directing Career
Brexit: A Disaster Decades in the Making
How Angels in America Became the Defining Work of American Art of the Past 25 years
A Diamond and A Kiss: The Women of John Hughes
On Vulnerability as a Disabled Person
Why Is It So Hard to Get Serial Drama Right in 2016?
How Race and Identity Became the Central Dividing Line in American Politics
The Terrorist Inside the Brain of Robin Williams
My Friend Sam
Movies Aren’t Dead, But They’ll Never Be the Same
Why the Golden Age of TV Was Really Born in the 1980s
The Inside Story of How Trump Won
Not All There: My Mother’s Lobotomy
My President Was Black 

Friday, 2 December 2016

Still Mourning, Not Celebrating the Cripple in Me

I rather sarcastically refer to International Day of People With Disability as 'Yay, I'm a Cripple Day!'. 
This rather cynical 'differently abled person' fails to see the logic in such self congratulatory landmarks. Is it to commend the broader public for being tolerant of people with a disability? They are not. Is it to celebrate various people with a disability for coming together to achieve common goals? They are not common. Is it to celebrate the achievements of disability policy? They do not exist. 
There is not much point in celebrating anything, beyond pointing out a noticeable difference in an individual's capability, which in my case happens to be 'Hey, I am in a wheelchair. Let's celebrate!'  
I will not be snacking on party pies or wearing a funny hat tomorrow because to me, 'Yay, I'm a Cripple Day!' does nothing but highlight the inadequacies of everything described above. 
Only when people with disabilities are recognised for their skills and talents alone will I be celebrating. When all sections of the public stop instinctively referring to a diverse group of people as a homogenised 'community', I will eat a party pie to celebrate. 
Some day, too, I may just wear that funny hat when politicians recognise that complex problems in disability policy do not have easy solutions. That day has not yet come, and until these days arrive, I have nothing to celebrate.

I wrote those words three years ago today for the now defunct ABC Ramp Up, and not much has changed. Of course, I'll still be mourning rather than celebrating. Tomorrow is a day that still angers me like no other.

Though I now live a happy life, and am more content than at any other point, I still had a rather frank conversation with FRG the other night. I told her why the first five seconds of my day are always the best part of my day. Those seconds are when I'm still getting my bearings, and I temporarily forget I can't get out of bed on my own. The sixth second is always the worst. That's when it all comes flooding back. I can't move. I have to wait for someone to move first. Then I have to get their permission so that I can move.

Doubtless, when I said this FRG was as sad as I had ever seen her, but I knew she would appreciate, and perhaps even respect me, for another round of my characteristic bluntness.

You and she have to understand the four fundamental truths of my life:

1. This anger will never leave me.

2. Not for as long as I live.

3. Not if each day is better than the one before.

4. Not if I could get everything else I could ever want.

However my perspective has altered somewhat. Some of this may be as a result of my job. This year I've played a small part in helping hundreds of people with disabilities and their families. The confidence in actually contributing a cause, instead of pretending to be, has made an enormous difference.

There is also something to be said for sharing a journey with FRG. Prior to meeting me, she had no previous exposure to people with a disability. Consequently, each day provides a new insight for her and the world of disability. What I have long accepted as a given, she sees as a challenge, or a triumph.

Despite these alterations, I am still angry that my perspective, and those of people with disabilities are ignored.

I am frustrated that as hard as anyone tries, no one will be able to understand the grief and anger I have on a daily basis.

I am annoyed that I get so angry and sad about something I will never be able to change.

I am angry that I will always be denied opportunities and things that I should be entitled to.

I hate that my physical challenges always defeat me. As hard as it tries, my mind always lets them defeat me.

The media, the disability sector, others with disabilities, and assorted NGOs who think they understand what I feel are asking me to celebrate what exactly?

Friday, 18 November 2016

Stayin' Alive

When you're a person with a disability, death hangs in the background from minute one. Doctors give you a definitive diagnosis: either telling you that you should be dead, or that you might as well be. Should you survive that gauntlet, your first friends naturally become other kids with disabilities. Fortunately I have never lived in fear of my own premature death, but just about everyone else did.

More than half of these kids are gone now, but touch wood, I have never been directly affected by the death of a person with a disability. Quite deliberately, I have avoided forging intense friendship with people purely based on a shared physical disability, because I see myself as 'more than my disability'. Perhaps this is why I recoil in shock over someone's death, but I'm not devastated as more and more people that I once knew begin to disappear.

Lately though it seems to be happening more often. Off the top of my head, I can count at least ten people with disabilities that I know who have died in two years. They were all in their twenties or early thirties. I guess at that age it is the final test as to whether a person with a disability lives to their life expectancy or their disability catches up with them.

In the last three weeks though, two people who I knew tangentially and shared the same disability as I do, have died. Naturally this gives me pause. Rationally though I know that I have been a lot healthier than they were, and their deaths have to do with other things besides the Cerebral Palsy, but that doesn't stop my fear from escalating.

Ironically, the instance of death of a person with a disability is the only time I self identify as a member of the so-called 'disability community'. Each time someone with a disability dies, I refer to them as a soldier of the 'crip army'. There's a reason for this. Every time one of them dies I cannot help but think of the final images of the film, Gallipoli, where soldiers are running across the terrain in the final wave knowing they are going to die, but they do it anyway, despite knowing the cause is entirely futile. The final freeze frame just makes me tear up every time. Another crip gone.


It would be disingenuous to say that I identify with Mel Gibson's character, who tries valiantly to save them all, but is ultimately too late. I know I can't, and I don't try. But I do feel guilty. I feel guilty that I get to live and they don't. 

Sometimes I think of a man I went to school with, who died almost ten years ago. He was the quiet one, he never said a bad word about anyone, but above all he wanted to do the things I took for granted. Or I think of another schoolmate who died almost a year ago, whom I mocked repeatedly as a ten year old for daring to spend time with another person whom I detested for reasons I don't fully understand as an adult. I may be smarter, and I may try to promote causes and people who do good work, but if it was a contest to decide who was the better person, then and now, the above two would beat me every single time.

Maybe that's why I have had this martyr complex most of my life where I have to be half as crippled, and twice as good. In my twenties, particularly, I used to say I was attracted to politics because I could speak for people who could not. A tiny part of that statement could be true, but every time I uttered those words, I knew deep down that it was bullshit. However, it's not hard to see so much death and hardship around me, and not wonder why comparatively I got a good part of an astoundingly shitty deal.

These recent deaths have also coincided with the happiest time in my life. I have got everything I could ever want; a great home, a good job, and most importantly, someone who loves me as much as I love her. These were three parts of my life I thought I would never find. It is the reason I no longer need to justify and record every thought I have. It is the reason I no longer care about what the purpose of my life is. It is the reason I have tried to take a step back from endlessly contemplating the political world, because as much as I do love politics, I need to live my life, and I need to enjoy the other parts of it too.

It makes stomaching these deaths a little harder too, because as much as I've fought for my happiness, and as much as I've earnt it, the fallen soldiers deserved theirs too. Because they worked hard for it too. I just succeeded, where they unfortunately ran out of time.

Tuesday, 21 June 2016

Telling People How to Live and Die: The Political Response to 'Me Before You'

Over the years I've explored in writing what it is like to hate being disabled: to question why people in similar positions love their disability, the lack of tolerance when it comes to diverse opinion in the so-called 'disability community', and my general dislike of many who try to teach others in the 'disability community' 'the right way' to experience their own disability. So here I am making a brief return to this blog after a long hiatus to once again call bullishit on those same folk yet again.

The movie Me Before You has been on my radar screen for a while, mainly because some fellow crips, (some of whom have yet to, or refuse to see it) say it sends the wrong message, because the male protagonist with a severe spinal cord injury wants to die. He then meets the girl of his dreams, who through her love convinces him to 'live boldly'? It is a shitty premise, but that is not because he wants to die.  The protestors disagree however, suggesting the plot is a 'disability snuff film'. Crips should not want to die, merely because they are crips, their argument goes. Typically their perspective misses some crucial and nuanced points.

No crip would tell you that their life is easy, especially (I imagine) those who have become a crip later in life, because they have had an accident, or contracted an illness. Some crips embrace their disability, others loathe theirs, and wish they could die rather than be disabled.

Long time readers will know that not so long ago, I did indeed want to die because of my disability. I've been very open about that since. Of course some people with disabilities might want to die, and they are right to (individually) feel this way. Of course some won't, and their perspective is valid too. We're talking about one movie, from one perspective.

The protestors did the opposite of what they intended to do, and made me interested in seeing a movie that I would otherwise would have had no interest in seeing. It was nowhere near as offensive as, for example, the 'inspiration porn' of The Theory of Everything. Me Before You is essentially Love Story with the genders flipped, and the male character having a different form of terminal illness.

Instead, the most offensive thing in Me Before You is not that the crip wants to die, but rather that the girl spends the entire movie trying to convince him otherwise. Let's be clear here. Me Before You is more fantasy than romantic drama. The characters inhabit a world where a C4 quad who uses a powered wheelchair, and is able to travel in a private lear jet with no explanation as to where his wheelchair is stored. This quad is also magically able to enter a tiny English flat with a three step entry way through sheer telekinesis.

However in order to understand how I felt in my 'dark period' (2010-2012) you will get no clearer picture of my self loathing and suicidal tendencies. I'm sure I'm not alone either.

The female protagonist in the movie is a cross between a Manic Pixie Dream Girl (MPDG) and Mary Poppins. In the real world these two would never get together. She's too self righteous by insisting her perspective is the only way to look at life (Much like the protesters who also share her view). His character is not really fleshed out, besides the stereotypical 'redeemable' hero. He's a douchebag (on wheels), who through the intervention of his MPDG looks at life a different way. We've all seen this character before... The only difference is that the actor in this movie is pretending to be a crip. Here's an idea protesters, maybe focus on that instead?

Does the movie suggest that people with disabilities don't lead meaningful lives? Possibly. However, for close to 28 years, I didn't think I lived a meaningful life either (as hard as that is for people close to me to read). But I think those who have a disability that protest this film's message are fortunate, because they don't seem to loathe their disability; they don't know what it's like to live in the strange hypocritical world where you want to kill yourself because you are disabled, only to realise that you are too disabled to actually do it on your own. Good for them.

Protestors with disabilities should know almost better than anyone else that nobody has the right to make sweeping generalisations about a particular group of people. They might think that it's wrong that some people with disabilities want to die, because they are sick and tired of living what they consider to be a shitty life. Too bad. The general public need to be aware that some people love their disability, others want to die because of theirs, and more still lie somewhere in between these extremes.

Make no mistake Me Before You is not a good movie. It flaws outweigh its strengths considerably. But if you want to know what it is to like to live mental anguish because of a disability, I recommend that you see it. Like all movies, this not a universal story that will apply to every experience. For a time however, it represented how I felt as a person with a disability. To deny an audience this perspective is a disservice.

Wednesday, 2 March 2016

My Longest Love Affair: Two Decades in Politics

20 years ago this evening, Saturday March 2nd 1996 my longest love affair began. It has been with me through good times and bad. I have embraced the love, I’ve become disillusioned and spurned it when things have not gone to plan. That night when it all began I was 12 years old, and I watched the 1996 Federal Election Coverage on TV. That was the night I began to think I could change the world.

Though my domestic political hero was vanquished by the dark forces of Howardism, that election begun a voyage of self discovery that has not abated. I remember from the ages of 12 to 21 that I wanted to be the first Prime Minister in a wheelchair (at that time only having the vaguest knowledge of who Franklin Roosevelt was). At the end of Year 9 my Australian History class was asked ‘What was the biggest turning point in Australian History?’ An essay that was supposed to be 800 words long turned into a 2000 word treatise on the Whitlam dismissal. That was when my political fanaticism became known and the words ‘politics’ and ‘that kid in the wheelchair’ became synonymous with yours truly.


I moved states soon after, and my love of my politics only deepened, but paradoxically it also became a tool to promote my isolationism. Lunch times were spent reading political biographies from decade's past, or studying policy handbooks. Nights on my year Year 11 'leadership' camp were spent reading a psychoanalytical tome on Richard Nixon, while the other boys in my cabin were searching for girls to have unprotected sex with. Although I wish I could have done the same, I was too smart for my own good, and realised that I was ill-equipped to have anything approaching a comfortable social relationship with anyone, let alone a member of the opposite sex.

The following year I was my high school's leading delegate to the regional Constitutional Convention. When we won the competition, one judge, who would later become my mentor, told me that one day I would shape political discourse in Australia. And so a year later I studied politics at university, under that same woman. I arrogantly (and correctly) proved that I had more political knowledge that most of my cohort combined. I had all the theories in the world. But I was yet to learn my toughest political lessons.

At the end of the first year of uni I joined the Australian Labor Party. I entered enthused and assured, with the belief that the only way to change policy was to be a member of a major political party. For a while at least, it all went according to plan, I helped write policies, ensured the victories of candidates I supported, and I began to think my contribution to the nation's political culture made a significant difference. As I was finding my feet however, the party I had grown to love imploded both in administrative terms, and in a policy sense. I quit in protest, never to return.

Luckily I was forging an academic career in parallel to this, successfully completing a university degree, and in the greatest achievement of my life so far, received First Class Honours in Political Science. These degrees have led to teaching gigs, and a moderately successful writing career as a political commentator. Although I'm still trying to complete my third degree in political science at the moment, for the first time in twenty years, politics is no longer the centre of my universe.

The first thing I look at when I get up every morning is my portrait of Roosevelt. It reminds me what is important in life. The struggle it takes to survive the shitty cards I was dealt when I was born. How I lost my way, and found the path back. 

Twenty years ago, politics appealed to me as a contest of ideas, with the most compassionate ones winning the day, because society at its very heart always makes the right choice. Now I know better, and I realise this is pure bullshit. Instead, political leadership has become my philosophical bedrock.

Without Franklin Roosevelt I would be dead. Throughout the last five years studying him has become more important than studying current events, and the mindless politicking the public is currently subjected to. Policy debates no longer sustain my interest like they use to. My political interest has now become about building character. 

1. What kind of traits do the great political leaders pocess?
2. What lessons can I draw from their experiences?
3. How can I apply these to my life?

I've come a long way in the last twenty years: my political philosophies have changed dramatically. My values have grown, developed, lost their way, and come back stronger. For the first time in the last two decades, politics has changed from the subject that defined my life, to a work related hobby. Without politics playing a major part of my life I would not be who I am, but I am no longer consumed by it. 

Tuesday, 12 January 2016

More Than Just An Office Job

This week I started a part time position with Youngcare as its Grants Administrator. It is my first office job, and that presents a whole set of unique challenges for me. On my first day I was fairly confident that I had the skills for the position, I just worried about everything else.

The first point of concern was that I didn't think I could manage a full day in the office, as toileting is the issue that I plan my entire life around. Once you factor in transport to and from the office, which is a good 25 minutes from my home by car, (and much more via the public transport that I must use) a standard 9am-5pm office day job requires at least ten hours of me not going to the toilet (except in emergencies). This in turn means that I have to refrain from eating and drinking during those hours as much as possible. This is obviously not an ideal situation for my body.

There is also the matter of getting to and from the office. The most affected part of my brain as a result of my Cerebral Palsy is learning how to navigate the world around me. I cannot read a map, nor do I have any sense of direction. I also have trouble with spacial and depth perception. In order to grasp these concepts to complete a round trip from my home to the office, I have to translate these deficiencies into the types of analytical problems that I'm most familiar with. This process is long winded, daunting, and incredibly frustrating for me. In total, the commute took me nine hours to plan out so I could understand it properly.

In order to solve these potentially unsurmountable problems, I am extremely lucky to have an understanding employer, and a very helpful support network. Firstly, to mitigate issues of personal care, my line manager, and the CEO agreed to break up my time in the office into two 4.75 hour working days, rather than a single standard day. This in turn has meant that my time away from food consumption and accessible amenities is reduced into a more manageable 7 hours. Additionally, FRG and I did a round trip to the office and back last week as part of planning the commute, so I was able to grasp exactly where I was going, how I would get there, and how I would tackle any potential problems that I might encounter during my first day.

For most people their chief concern on their first day at work would be to find colleagues that share mutual interests, or whether their supervisor would be genial rather than dictatorial. While these were important concerns for me too, they ranked low on my list of priorities compared with the challenges highlighted above.

Failure to recognise obstacles such as access to transport and personal care for a person with a physical disability are among significant reasons why employment rates are significantly lower on average for us crips compared to the rest of the population.

Successfully navigating my first day at an office job was to me a major achievement in my life thus far. As a teenager I remember thinking to myself on a number of occasions that I could never have an office job, and manage it on my own. The risks were just too great. What if I needed to go to the toilet, and could not be supported to do so? What if I missed a curb, and tipped out of my wheelchair on my way to work?

On my way home from my first day, I pulled into my train station to find FRG waiting to greet me. I wheeled off the ramp, then pumped my fist in the air. As we hugged I wept. Something so easy for the majority of the population was a great personal fear for me, and I had conquered it. It was just the first day, and I probably have over forty years of office work left, but I have proven to myself that I could do it.  I will continue to do so over and over again.