Saturday, 31 December 2016

Best of 2016


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


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


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.

Sunday, 20 December 2015

2015: A Wish Granted, But A Dream Lost.

A year ago, I posted on Facebook that I had one primary goal in 2015, which frankly has been my yearly goal since 1997. I repeated my oft quoted remark by the protagonist of the television show, Girls, Hannah Horvath:

I just want someone, who wants to hang out all the time, and thinks I’m the best person in the world, and wants to have sex with only me.

It may have come eighteen years too late, but I finally found someone who fits that deceptively difficult criteria. I met FRG in May, and ever since she has complemented my life, rather than overpowered it. The throughline of 2015 was my chance meeting with FRG, and our developing relationship. Everything since has featured her. She has now moved in with me, and we are planning trips to Bluesfest in March, and to Adelaide in July.

Unfortunately 2015, was also a year of profound disappointment. As one dream came true, another died as I said goodbye to my PhD, and resolved to downgrade it to a Masters instead. Tears were shed, and a profound anger emerged that will never really dissipate. Regardless, when I finally finish the thesis next year, I will not be returning to study again. I need to do something different.

I have had many opportunities to do this. In January I was the lead writer for The Conversation's coverage of the 2015 Queensland Election, which received nearly 200,000 unique viewers to my articles. From this came my first ever television appearance as a political commentator. It also led to a job with Griffith University as I became a weekly contributor to its political blog The Machinery of Government.

I continue to live in the best supported accommodation in Australia with help from Youngcare and Wesley Mission Brisbane. This has allowed me to have an incredibly fulfilling life. I went to the Gabba for the first day of the First Cricket Test, saw my beloved Port Adelaide play in Melbourne, the Gold Coast and in Brisbane, attended four concerts, four films at the British Film Festival, productions of Wicked and Anything Goes, along with going to the movies at least once a fortnight on average. Further, I took a week long holiday on the Gold Coast in September, which was organised by WMB where I read six of my forty books of the year. I am incredibly fortunate to have these opportunities.

2015 may not have been as good as the proceeding two because of the disappointment with my thesis, but perhaps it has been the most crucial. For the first time I am beginning to make long term plans in my personal life. 2016 is already shaping up as a significant year of change. It will be due to the most important revelation of this year.

I am not alone anymore, and I no longer have to wish for that loneliness to disappear.

Saturday, 19 December 2015

The Best of 2015

There is less than two weeks of 2015 left, so here comes my 'Best Of 2015' list. The usual disclaimers apply. The most obvious thing is that I didn't get to see or hear all the things I wanted to, and thus the lists reflect my personal tastes. 

I encourage you to make your own lists if you disagree with my choices.

Books (I've read, in order of preference)

Tunes (in order of preference)


TV (In order of preference)

Movies (In order of preference)

Internet Articles (In chronological order)

Thursday, 3 December 2015

Moving, Yet Another Barrier.

The day after my 32nd birthday, FRG moved into my apartment officially. Though we had only been dating for a little over 6 months, we agreed that the timing was right. She had been spending almost all of her time sleeping at my place, and the place that she was renting was not at all suited to my electric wheelchair, so much so that I had never been inside.

A casual reader of this blog might assume that this important step may be arrived at too quickly. However, as with all facets of my life there are always external forces at play. Prior to sharing our apartment, my time with FRG was severely compromised, as she lived on the other side of town, meaning that all of her permanent items were nearly an hour away. Not to mention the fact that she was paying (cheap) rent on a room she never used.

We both entered this relationship knowing that we wanted it to last years, not months. We think in the long term.

Yet an important question had to be tackled.

How can an able bodied partner successfully move into a complex specifically designed for people with disabilities, who are expected to live by themselves?

This is why my circumstances are exceptional. Youngcare, who built my accommodation, and Wesley Mission Brisbane (WMB), who provide the staffing to help with my physical support, both agree on the same principle. I am a young person living a young life. Part of a 'typical' young life is finding a long term partner, and moving in with them. This is exactly what we have done.

Just because I am disabled, it does not mean I am incapable of finding love, or that I must find love with another person who has a disability, because we happen to share similar disadvantages.

WMB could have said no. This would have been outrageous to me if they did, but many other organisations would have. In fact, a few months ago the Manager of the Apartments and the Clinical Care Nurse were the people who first suggested that this living situation would be possible. FRG and I had not contemplated moving in together at that stage.

I talked with management again about a week before FRG moved in to see if the option was still viable. They said it was, then we convened a meeting to organise a few particulars. This meeting was not about restricting my options, but rather ensuring my safety and our privacy.

WMB wanted to ensure that if FRG was to do the majority of my physical care (She always wants to, despite my long term reservations) that her, I, and the organisation were legally covered. They also asked us if they could put a lock on our bedroom door, which was to be paid for by WMB. Although I could tell that WMB were somewhat uncertain about these processes, they did them anyway to their great credit. Lesser organisations would have framed these types of discussions as too difficult or inappropriate.

FRG and I are blazing a trail, even though we shouldn't be. WMB haven't confronted this type of thing before. A walkie has never moved in with a cripple in their supported accommodation. It is not their fault. This simply has never occurred before. I'm lucky that the management of my apartment building are so forward thinking. Others are not. Society in general believes that people with disabilities are unable, incapable or undeserving of love. It is not the first barrier we have had to overcome, and it will certainly not be the last.

Sunday, 8 November 2015

An Important Restatement

Increasingly over the past few years, and particularly in recent months I have been criticised, and in some cases vilified, for the attitude I have towards my own disability. Particularly from those who also have a disability, who should know better. The following is something you've probably read from me before in different forms, but this needs to repeated yet again.

My disability does not define my life. I refuse to be known, labelled and identified by my worst physical characteristics. I also refused to be defined by the lack of control over my life (although I do have access to more choice that I had previously since moving into supported accommodation nearly 3 years ago). I refuse to wear my disability as a badge of honour. I am not proud to be disabled, and I never will be. How can I proud of something that has caused so much anger and pain to my family and I over an almost 32 year period?

I do not deserve special attention for simply living my life as a disabled person. For doing this, I am not your hero, inspiration, guiding light, or role model. I am simply a man who has made the best out of a shitty situation. Nothing more, nothing less. I am just doing what I'm meant to be doing.

I have a right to be angry about this situation. Failure to deal with this anger for the majority of my life was a significant factor in triggering my extreme bout of depression. In acknowledging this anger, I have not only become healthier, but it has enabled me to become a more well rounded person.

People who have come in contact with me may not understand or agree with any of the above, but no one has any right to tell me how I feel about my disability. No one can possibly understand, the good, the bad, the ugly, and introspection it has created. I have no right to judge any other individual with a disability, and their feelings about own individual experience, because their journey is vastly different than mine.

I am not disrespecting any other person with a disability because I have a negative attitude towards my own. Lots of people with disabilities have, and will continue to do great things with their lives, but they shouldn't be considered 'great' because they achieve these outcomes simply due to the fact that they have a disability. People with disabilities deserve equitable treatment. I am one of those people. First and foremost I am a human. Treat me as such, whether I have a disability or not.

Friday, 23 October 2015

Master of One: There is No Doctor In This House

On October 8th 2010, I was nervous.

I was presenting a PhD thesis confirmation paper to an audience of political academics, most of whom I had referenced in the document. Normally I am confident. I am usually a good public speaker, and because I can't write with a pen, I usually speak without many notes. But this was my academic livelihood I was presenting. Luckily I did well, and received universal praise. I assumed that it was the first time many had seen an academic with a disability, and so self consciously I figured that at least some of my good feedback was a direct result of simply being surprised that I was there, and that I had performed well. Regardless, I was ready to move on to my next challenge.

The next five years were the hardest of my life in every sense. Away from academia I became seriously ill, just two and a half months after that confirmation day. For a further two years I was still living with my parents, 100 kilometres away from campus, and the city where I wanted to be. And I had a severe mental illness. Then I moved out of home, and began to have the type of life I wanted to live. All the while the earth continued rotating.

There were five different changes of Australian Prime Minister, three different Queensland Premiers, three different Australian Test Cricket Captains, three different coaches of my football team, and three albums recorded by Taylor Swift in the time I took to write the PhD thesis.

In all that time I kept writing draft after draft of the chapters of my thesis, which was to be 100,000 words long, and comprised of 6 chapters. Between 2009 and 2015, I submitted 43 draft chapters. I still have them all. Yet when my two wonderful supervisors would come back with the comments, none of the drafts were anywhere near perfect as final copies. Some were of higher standard then others, and each time my supervisors would do everything in their power to make the drafts better.

Without getting too academically technical, each draft would have a variation of the same fundamental flaw. Each time I would submit a new draft, the same problems would emerge, and between my two supervisors and I, we could not solve that problem. As hard as we tried, and as skilfully as we tried the problem had become insurmountable.

On October 8th 2015, I was nervous.

I knew the dream of obtaining a PhD was over. What was once a very possible dream could not be achieved. After asking for three extensions, I had used up all my chances. I am not going to become a Doctor.

In reality, I knew this the week before. When I received my feedback on my last draft, I knew I could not finish it. I knew I had run out of time. I spent the week trying to work out ways I could possibly finish in the time allotted. It was like a giant math puzzle in my mind of which there was no solution. My supervisors had sensed the same thing, at the same time I did.

I spent an hour in their office, the sole topic of discussion was what I could salvage out of my nearly seven years of work.  I have worked far too long and far too hard to come away with nothing. For now, my supervisors have told me to take some time off, rest and recharge, before I redesign it into a Masters thesis due some time next year.

I am devastated. I've put all my energy into achieving a PhD, only for it to never materialise. I wanted to become a Doctor of Philosophy in Political Science more than anything. You may not see this as a failure, but I do. Being disabled I have to be half as crippled and twice as good to succeed in life, and I am just not good enough to do a PhD.

However, I have enough perspective to know that I am in a better place in every other aspect of my life. I have freedom, I have choice. I am healthy. I am loved. I am in the place I am meant to be.

I just won't be a Doctor. And that hurts.

Monday, 31 August 2015

Peter Singer, PWDs and the Elite's Approval of Murder.

A few weeks ago some friends with a disability registered a muted protest on social media during the Melbourne Writers Festival (MWF) expressing their outrage at the festival's inclusion of Peter Singer. I joined them in expressing my disapproval, but living in Brisbane, I couldn't do much. Then last week I discovered he was invited to the Brisbane Writer's Festival (BWF) too. Then, I got really angry.
For those of you who don't know where this outrage stems from, Singer is a man who believes all foetuses that show physical abnormalities (re: disabilities) should be aborted in ALL circumstances.  Not only do I find his views offensive, but I'm deeply disappointed that an institution that I love is endorsing these views. In putting forward this view Singer advocates that the lives of people with disabilities should be terminated, and are not worthy of life. This is selective genocide. Singer's views are not a matter of promoting diversity of opinion, this is marginalising and actively shunning people with disabilities. 

As the late Stella Young wrote in 2012.
In his book Practical Ethics, Singer argues the case for selective infanticide. He deems it unfair that "At present parents can choose to keep or destroy their disabled offspring only if the disability happens to be detected during pregnancy. There is no logical basis for restricting parents' choice to these particular disabilities. If disabled newborn infants were not regarded as having a right to life until, say, a week or a month after birth it would allow parents, in consultation with their doctors, to choose on the basis of far greater knowledge of the infant's condition than is possible before birth." His perspective also takes account of a disabled child's place within their family.  
"The birth of a child is usually a happy event for the parents. They have, nowadays, often planned for the child. The mother has carried it for nine months. From birth, a natural affection begins to bind the parents to it. So one important reason why it is normally a terrible thing to kill an infant is the effect the killing will have on its parents.  
"It is different when the infant is born with a serious disability. Birth abnormalities vary, of course. Some are trivial and have little effect on the child or its parents; but others turn the normally joyful event of birth into a threat to the happiness of the parents, and any other children they may have. "Parents may, with good reason, regret that a disabled child was ever born." 
If you some point in your life you need reading glasses, should doctors abort you in the womb because you will not have perfect vision?

When I found out that Singer was going to present at BWF, I decided to put my money where my mouth was. On Friday, I wrote an email to the BWF director Julie Beveridge echoing the above arguments. This morning, I got a lengthy, thoughtful response, the beginning of which read:
Thank you for your email, and for bringing to my attention this particular view point of Peter Singer, it’s not one I was familiar with.  
I empathise deeply with your position...   
Peter Singer has been engaged at the festival to discuss this latest book The Most Good You Can Do, a call to action for individuals to live a life of effective altruism that involves doing the most good possible. Altruism is a topic that is extremely popular amongst Brisbane audiences and Peter’s Good Thinking lecture is a continuation of a discussion BWF has been having over a couple of years on the topic. Previous conversations in this area include Inspire Happiness, with Matteiu Ricard who discussed holistic giving.   Festivals like BWF are made up of hundreds of writers with different viewpoints on a variety of topics. It’s my job to program thought provoking content for audiences, and the topics discussed in Peter’s book The Most Good You Can Do are reflective of broader conversations about living more meaningful and connected lives. By programming a particular individual BWF is not endorsing any or all views held by those individuals, but providing a platform for conversation, debate, inspiration and entertainment.
The rest of her email recognised the lack of content regarding disability in the festival program, and to her great credit Beveridge invited me to establish a session specifically regarding disability and writing. I am going to take her up on the offer.  I wasn't expecting it, or for her to take Singer off the festival program at this late stage, so the response to my initial correspondence far exceeded my expectations. Beveridge went as far as she could go, but it still doesn't address the larger problem.

As a friend of mine, ASN, posted on her Facebook yesterday:
If any other minority in Australia was targeted in the work of this man he would be shunned! Could you imagine if he suggested selecting against children with 'gay genes'? He would be accused of genocide of the gay community! Or what about race? He would be Hitler reincarnated. Not one of these groups or their allies would stand for it. It would be called unacceptable and rightly so. 
To believe that an entire group of people have no right to life is sickening. Human variation is normal. If he targeted these people so many people in the community would be outraged, they would have boycotted these events. They would have publicly complained and the man would have been asked not to come. Just like when the American's were invited to preach hate speech about women at Hillsong here. What he preaches is no different. It is hate speech about disability and it is just as wrong as if he was sprouting that we should select against gays or race...
How is this possible? It is a really shit time to be disabled in Australia right now for many reasons, but to have this man allowed to publicly discuss his eugenic ideas has taken it to a whole new level. Before you tell me he has a right to his opinion please tell me how you would feel if this was your gay child they were discussing, or if someone was advocating for the eradication of your different genes? You remember how the holocaust happened? It happened when the good people allowed bad things to happen to those who were different to them. We already have doctors who advocate the termination of disabled children, or the pulling of life support for people with disabilities...

Forums such as BWF and MWF are designed to be places that act focal points for cultural debates in this country. In allowing Singer to participate they are condoning his opinions on selective genocide. These festivals represent a reflection of the political and cultural classes in this country, and their participants regard themselves to be 'intellectuals'. If these 'intellectuals' willingly support Singer and his murderous views, what hope have we fourth class citizens got? It is indeed a shit, shit time to be a person with a disability in Australia.