Why you shouldn’t say “You don’t LOOK sick!” to someone with ME/CFS

Posts

Tomorrow, Friday 12th May 2017, is International Awareness Day for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome. For more information about ME/CFS, see the links at the bottom of this post.

Photo available from Max Pixel via CC0 license.

If you see a person with myalgic encephalomyelitis or chronic fatigue syndrome, it probably means that they are having a good day. For you to see them (unless you are a very close loved one, carer, or health care professional), they must have been able to leave their bed or sofa today. It might be their one good hour, or even minute.

Seeing them, you might be taken aback to hear that they have a disabling illness, and see no harm in expressing your surprise.

Please, don’t.

Here’s why.

When you remark to a person with ME/CFS that they “don’t look sick”, or tell them that there’s no way to tell that they have a chronic medical condition, or ask them why they have that cane/wheelchair/mobility device/disability pension if they can WALK or SIT UP or THINK, you may be reminding them that:

  • a quarter of us are housebound and for majority of the rest, it takes a huge amount of preparation and planning to venture outside safely. Yet most people we encounter will take being outside for granted and minimise our treasured accomplishment.
  • despite ME and CFS debilitating up to 242,000 Australians, around half of our GPs do not believe we have a ‘real’ illness and think that we possibly are faking symptoms for attention.
  • although we live with a poorer quality of life than patients with cancer, diabetes, and heart disease, most people will rather judge our condition on our looks.
  • there is no cure for ME/CFS, yet the Australian Department of Health has only directly funded three studies into the condition in the past 17 years, and that funding ended in 2005. Most of it went to hepatitis C research, and studies by psychologists (ME/CFS is not a psychological or psychiatric condition).
  • the burden is on us to constantly prove that we are ill and to ‘perform’ disability. This saps energy we don’t have.
  • it often feels like our lives have been stolen from us, permanently, and yet disclosure of our condition is often met with disbelief or suspicion instead of sympathy.
  • the majority of people still believe that disability always ‘looks’ a certain way and may shame or punish us publicly if we do not conform to their preconceived ideas.
  • exertion (such as walking, reading or having a conversation) worsens our symptoms. So, while we may be able to be active in this moment, we may face days, weeks (even months) in severe pain and fatigue to pay for it.
  • we may know the cost of exerting ourselves with this outing and be trying not to think about the physical payback that will come later. We want to enjoy this moment.

If you’re surprised to see a young person with no ‘visible’ disability walking with a cane or standing up from their wheelchair (aren’t mobility aids visible?) – or to hear that a person with no mobility aids is severely ill – ask yourself if it’s more important for you to satiate your momentary curiosity, or for someone with a serious illness to have a nice day.

Curious about ME/CFS? For last year’s ME/CFS Awareness Day, I recorded a short audio documentary giving a run-down of the illness for my podcast Just A SpoonfulYou can listen here.

For more you can listen to my interview with 3CR’s Women On The Line about living with ME/CFS, or this conversation I recorded with fellow writer and ME patient Lefa Singleton Norton. Or read these pieces I have written for Seizure Journal: the satirical How to talk to sick people’, or memoir piece ‘An inconvenience’.

This International Women’s Day, remember our victories.

Posts

The other night, at my feminist book club (yes, I am a Portlandia stereotype, what of it), we were discussing Clementine Ford’s Fight Like A Girl. While many of the younger women in the room felt galvanised by Ford’s treatise, the eldest woman in the room – one of the few seniors present – had a strong reaction to the contrary. “It made me feel terrible,” she said. “I have been working on this for so long … And it sounds like my generation achieved nothing.”

The room shifted uncomfortably. So many were new to feminism and shining-eyed, just beginning to laugh at #NotAllMen and shout back at street harassers. Here was a battler from the second wave, still eddying at the shoreline with the rest of us, a reminder that the work of social change is hard and long and cyclical. The gender wage gap has actually grown. Our first woman prime minister was treated to spectacular misogyny by the public, media, and her fellow ministers (chief of whom became her successor and the Minister For Women). In Queensland last week, even an attempt to decriminalise abortion was blocked. We have to keep fighting the same fights over and over.

Julia-GIllard

At home, after book club, I read this quote from Rebecca Solnit’s Hope In The Dark: “We need a litany, a rosary, a sutra, a mantra, a war chant for our victories.” If we forget our successful milestones and focus only on how far we have to go, she urges, we risk despair and the paralysis of inaction. A huge, important part of the feminist project is identifying problems, whether it be measuring the wage gap or giving women the language to describe mansplaining. It’s important but we can’t get amnesia about how much our foremothers achieved. We need to protect ourselves from the inaction of despair.

I, personally, have gorged enough on despair lately. Last year was ridiculous, and it seems like each day of 2017 some new low is being established by the Trump administration. I need to remember how far we’ve come despite current circumstances. This International Women’s Day, I want to chant our victories, like a hopeful, non-murderous version of Arya Stark muttering a list of names to myself.

Since sometimes feminism’s successes can feel distant and intangible, I’m going to focus on just what’s happened in the past twelve months.

In November, I voted for a woman for President of the United States of America. Even her loss to a misogynist, or her flaws as a candidate, can’t erase the power that casting that ballot had for me.

Out of that horrific US election came some positives for women: Kamala Harris, California’s attorney general, became the first Indian-American and the second Black woman ever elected to the Senate; Catherine Cortez Masto became the first Latina elected to the Senate; Tammy Duckworth became the first female senator to have served in a combat zone, and the second Asian-American woman ever elected to the Senate; Stephanie Murphy became the first Vietnamese-American woman to be elected to Congress; Muslim woman and former refugee Ilhan Omar became America’s first Somali-American legislator; and Pramila Jayapal became the first Indian American woman elected to Congress. In her victory speech, she called her victory “a light in the darkness”.

Lemonade happened. Never forget.

rs-238714-Beyonce_Lemonade00

Last year, Pakistan passed strong anti-rape laws and finally closed the legal loophole that allowed perpetrators of so-called ‘honour killings’ (the colloquialism for families murdering girls and women who have married someone of their own choosing or some other ‘shameful’ act) to avoid conviction. This progress was largely thanks to Sughra Imam, the former senator who first introduced the bill proposing the new law, and film-maker Sharmeen Obaid Chinoy with her Oscar-nominated documentary A Girl In The River: The Price Of Forgiveness. And Obaid Chinoy’s subject, Saba Qaiser – the girl whose father shot her in the head, put her in a bag and threw her in a river for marrying without his consent. But she survived. Obaid Chinoy said of Qaiser, “she was very open to telling her story because she believed very strongly that she didn’t want anyone else to go through what she had.”

The US Treasury Department announced that Harriet Tubman would replace Andrew Jackson on the $20 bill. Tubman, born into slavery in the 1820s, escaped Maryland and then immediately turned around to go back and free her family. She made around thirteen missions to rescue enslaved families and friends, in the secrecy of night, and was nicknamed ‘Moses’. Andrew Jackson was alive at the same time as Harriet Tubman; he owned hundreds of slaves. He is known for passing a law that forced First Nations Americans off their lands. Tubman’s face will replace his.

On the first day of Donald Trump’s presidency, at least five million people joined a global protest called the Women’s March, with half a million of those people marching in Washington DC. I was one of the 5,000 people marching in Melbourne, and feeling the press of bodies and seeing the signs women had made with their own hands to protest white male supremacy – it blew away the cobwebs of despair for me, for a day.

Remember that, at the Sydney Women’s March, a few Trump supporters paid $4,000 to skywrite “TRUMP” above the protest. Above the 10,000 protesters. They may have money, but we have the numbers.

Nevertheless, she persisted.

Remember our victories; build on them. Stay in solidarity with all other women, that we keep pulling each other forward with each success. Make your reproductive rights language inclusive of trans and non-binary folks; make your protests accessible to disabled people; decolonise your feminism; think beyond what the movement can do for you. What can you do for the movement?

In 2016, for many women, the world moved sharply towards a dystopia. (For many, it was already there.) In 2017, let’s imagine the kind of world we want to march towards. And persist until we get it.

 

Thank F*ck 2016 Is Over

Posts

This year, I have often returned to JK Rowling’s words about failure at dark times in her life: “[It] meant a stripping away of the inessential.”

It felt like a lot of things I valued were stripped away from me this year, and I know that my community has been feeling that on a national and international level, too. Fuck, what a year. But I’m going to silver-lining this shit for a minute so bear with me.

I think the reason dystopian fiction has resonated with me since my teens is that I yearned to punch through the glossy carapace of politeness and routine that seemed to encase screaming unfairness all around me. I wanted permission to fight for my values, to suspend the regular schedule and get down to the work of saving the world. In Tomorrow When The War Began the high school kids go from worrying about what to do after Year 12, to worrying about the survival of their friends and family.

“I stopped pretending to myself that I was anything other than I was and began diverting all my energy into finishing the only work that mattered to me.” – JK Rowling, Harvard Commencement Address, 2008.

When I became disabled, most of my resources were stripped away from me. Money, time, energy, brainpower. I like to think that it has made me leaner and more focused. I got serious about my writing career; now that I couldn’t work a full-time day job in admin “just for a while, just to save some money”, there was no other time for me to start being a writer. My illness keeps mortality right up in my face. I can’t be distracted.

This year, this horrible year, has been like watching my first year of disability happen to a whole community. Everyone feeling gut-punched, in grief, but sure that soon it will go back to normal. And then it doesn’t. And you slowly realise that life is going to be harder from now on.

hermione-everythings-going-to-change-now

But – and here’s the questionable silver lining – this is the time to divert all our energy into the work that matters to us. At least we need not fear apathy, because we’re not going to have the opportunity for it. There is plenty of work to do, all of it meaningful.

On the theme of stripping away inessential facades, in 2016 I quietly came out as queer. Not with a bang, but with a “oh btw I’m bi, so, yep.” After a very painful break-up this year, I don’t even know if I’ll date again any time soon, so it felt strangely anti-climactic to come out when I’m single and not looking. But I’ve learned from my wonderful queer friends over the past few years that it isn’t so much about who you are or aren’t ‘doing it’ with, it’s about who you are. And ‘straight’ doesn’t fit comfortably on me. It never did, but when I was younger I didn’t feel ‘queer enough’ to claim queerness. I’m glad to now be in the company of friends who don’t police my identity in that way. It feels good to be able to express my whole self, and shake off the biphobia I experienced in my teens.

janelle-monae_i-will-love-who-i-am

2016 has well and truly cracked the carapace that some of us still had around reality. All kinds of hate- and greed-fuelled dangers are spilling out of hiding. But at least there is this: you have been given permission to fight. Banality no longer holds any promise of reward.

We have work to do.

 

El from Stranger Things grew up to be Elle Woods in Legally Blonde

Posts

This is a bit of fan fiction I wrote based on my theory that Eleven from Stranger Things (played by Millie Bobby Brown) grows up to be Elle Woods in the 2001 movie Legally Blonde (played by Reese Witherspoon). Spoilers for both (although, c’mon, you’ve had 15 years to watch Legally Blonde, it’s a comedy classic, get on it). 


From the moment Eleven put on that wig, she felt powerful in a way she never had before. The boys’ physicality around her changed: when they stood in a circle, there was a space for her; Dustin and Lucas relaxed, stopped flinching when they caught her in their peripherals. Mike looked at her a lot, but not the way prey watches a hunter. She liked it. The first time the wig came off, she panicked, turning to him. “Still pretty?”

Years later, at Harvard Law, Emmett Richmond would tell her that her blonde hair gave her a power she underestimated, and that he hoped she would channel it to use for good. She smiled a little: here was somebody who had an inkling of what she was. Elle had never been seriously intimidated by the Harvard admissions process – she’d strode through high school and college knowing she could break arms with a tilt of her head. Her self-worth came from knowing that she chose not to harm.

Woods was not her given last name. It was a name she had taken for herself. Woods, for the place where she had found Mike and Lucas and Dustin. It felt like her life had started when she found those boys in the forest. In college, she discovered the joyous support of other women in sorority, but never quite shook off the self-preservation instinct to be amenable to men. It wasn’t physical protection she needed from them – if only they knew what kind of a protector they had in her – but psychic reassurance. Like the Eggos she still ate sometimes when she was nervous, friendly men reminded her of the first time she’d felt safe.

She was glad of her adoptive parents, who gave her a comfortable life and never asked anything of her. They knew nothing of her previous existence in Indiana, except that she was an orphan and had been traumatised. They’d wanted a beautiful daughter and they found that in El (the spelling soon after changed to “Elle” to avoid confusion at her expensive new school in the Valley). It was an easy relationship between them: she was grateful and they were happy to be appreciated. When she expressed her wish to study law, they were surprised, but it never occurred to them to try to stop her. It rarely occurred to people who knew her to try to stop Elle.

Elle surrounded herself with soft, pink things – fluffy pillows, sweet fragrances – and avoided anything that would make her seem intimidating. It took her a long time to work out that she was still trying to prove she wasn’t the monster. Self-care was prime: she carried her service animal Bruiser with her everywhere. Being a survivor is an ongoing act. Elle took good care of herself.

Warner’s betrayal was a turning point. This was the only way Elle could view his sudden break-up with her – as a betrayal – because the first thing she had learned about healthy relationships was that “friends don’t lie”. When Warner brushed her off, Elle’s shock was complete. “So when you said you would always love me, you were just ‘dicking around’??” she shouted. However, still vulnerable to the suggestion that she was the problem, Elle vowed to become worthy of him. She took Warner’s assertion that he needed a “serious” girlfriend seriously, because under the bouncy hair and earnest smile, Elle was always serious.

In some ways, Harvard was like being back in the isolation tank at the Department of Energy. People only cared about what she could do with her mind. It was frightening, that first speech of Professor Stromwell’s, exhorting her class to consider their convictions as life-or-death. Under Elle’s outrage at being ejected from the seminar that day was her fear of once again having responsibility for someone’s life – or death. She hadn’t really considered that aspect of the law. Fashion merchandising had always had safe stakes. But she was much older now and knew who she was.

She was Elle Woods. First named by a boy, last named by herself. A lost kid who became homecoming queen. The girl who came back to life. She had powers no one suspected.

There was more in her valedictorian speech than the rest of the graduating class could have detected. Elle spoke of the unreliability of first impressions, looking down at her friend Vivian. But she was also thinking of her first friends, who had misgendered her and called her “freak” and came to rely on her for survival. At the podium, she encouraged her classmates to step forward into the world with a strong sense of self, something people like Warner took for granted. He rolled his eyes while she spoke and Elle fleetingly thought about dropping an SUV on him. She finished her speech with the conclusion for which she had fought hardest all her life: “You must always have faith in people. And most importantly, you must always have faith in yourself.”

Whether facing down sexual harassers in the courtroom or corrupt politicians on Capitol Hill, Elle was shaken but not afraid. She would say what she always said under her breath when she looked at bullies. “Enough.”

 

You’re just a body. You can’t be trusted.

Posts

Content note: Mentions of sexual assault survivors, but no graphic imagery or descriptions.

 

This blog post is also available as an audio version through SoundCloud. Click here to listen

I just read a piece by Melissa Gira Grant, titled ‘All Bodies, No Selves’, about a problematic trend in media reporting and policy making that reduces survivors of sexual assault to just bodies, and it resonated with me in regards to disability reporting and policy. It reminded me of why I decided from day one of planning my podcast that I would only invite people with chronic illnesses and disabilities on as guests.

Grant comments that people who write about gender/sex/sexuality politics from within their own experience are often expected to do no more than present a compelling personal narrative. She says:

If you have something political to say about gender or sexuality, you will be expected to voice it through what your body is and what it has done, what has been done to it.

Media interviews expect little more than a “peep show”, Grant says, requiring you to create value with disclosure after disclosure. I had an experience like this in a recent radio interview, for which I had been invited to comment on the government’s drive to push people aged under 35 off the Disability Support Pension. I had expected that I was invited in my capacity as an advocate, given that I had written about this subject and hosted a podcast about young people with disabilities. However, when the radio host turned the discussion to me, her voice became sad and she adopted a funereal air as she introduced me. For, you see, I am young, and … d i s a b l e d. I had a dozen statistics and facts that I kept trying to bring to the conversation about government welfare policy, but the host talked over me, asking instead for me to disclose the sorts of cruel things people say about my disability.

I was taken aback because – maybe thanks to my white cishet privilege and the fact that usually people can’t see my disability so assume I am able-bodied – I had presumed that they wanted my opinions. It surely helped that my opinions were informed by personal experience as well as professional work, but I was just happy that the mainstream media was inviting a young disabled person to comment on policies specific to young disabled people. The commentator the show had had on before me was an older man from a disability advocacy body. (He wasn’t asked what mean things people say about him.) I didn’t realise that my status as someone possessing a chronically ill body was the only thing they were interested in.

In ‘All Bodies, No Selves’, Grant wrote this passage about sexual assault survivors that could easily be about people with disabilities (two groups which as a Venn diagram would be nearly circular):

Be a good poster girl. Get vulnerable enough for someone to step in with the right story, the perfect #hashtag, the slightly more powerful person to carry your cause for you. (You’re just a body. You can’t be trusted.)

This reads to me as a perfect account of inspiration porn.

Some of this was in my mind when I began planning my podcast Just A Spoonful, back in mid-2014. I liked the idea of a disability-only space, where able-bodied people’s voices were denied access. Not out of a grudge – but to pound out a level playing field for us. Each episode I have a guest with a disability. Everyone on my podcast has a disability. So there’s no opportunity for novelty – you already know that they’re disabled or living with some chronic illness, because otherwise they wouldn’t be there. What this also means, is that nobody has to be the poster child for disability or for their particular condition. I’ve had three episodes where my guest had bipolar disorder, and none of their stories are the same.

I tell each guest when I invite them onto the show: we don’t need to talk about your condition, your impairment, your illness, your disability. The fact of it is already there, baked into the show’s premise. There’s no need for you to relive your diagnosis story, or talk about “what it’s like” if you don’t want to. You’re here because I want to know about you, because I wanna pick your brain. Your band, your clothing store, your sustainability advocacy, your pet kitten – like, that’s why I invited you. (More guests with kittens, please.)

That being said, an incredible amount of guests choose to talk to me about their conditions. After all (and this is kinda the point of the podcast), our bodies are huge part of our lives. They’re sort of vital to everything we do. But they’re not the whole experience. Too often, the wider population gets stuck at the ‘body’ part of people with disabilities. Nobody talks to us because we’re just bodies. That’s how The Australian can run a piece about the closure of a residential institution in NSW in which the journalist visits the building, profiles some of the residents, and only includes quotes from their family or advocates. I actually spoke to that piece’s author, Rick Morton, via public tweets, and he offered that,

In this case I wanted to tell the story of one resident who moved from Westmead. He is non-verbal. But I should have tried harder.

I have a really wide network of people with disabilities who I call frequently, to orient my reporting from their perspective.

I understand Morton’s bind in wanting to present the most compelling story but also report respectfully. I do not think he accomplished his goal in this case. Martin Ryan, the 54-year-old man Morton was profiling, was presented as merely a body that was tended to and spoken for. Ryan’s 84-year-old mother (not a resident) was interviewed about what the closure of the institution meant to her, and NSW Disability Services Minister John Ajaka was quoted describing disabled people picking out their own linen and paint schemes. Yet group home residents themselves were still absent, a silent group being shuffled from one building to another.

I can’t help wondering, why couldn’t the journalist covering that story, any disability story, be someone with disabilities. If you don’t have someone in your network who has a disability and is appropriately qualified, why not train someone up? People with disabilities are more than capable, and a very diverse community. A bunch of us are writers, freelancers, and if we lack the commensurate professional experience of our able-bodied peers, it’s probably because we either can’t physically manage full-time work or because workplaces are structurally inaccessible to us. These are not huge obstacles to getting more disabled voices out there. Got a story about the NDIS? Put someone with lived experience on that beat. Then you’re less likely to get subpar reporting that forgets to interview any of the people directly affected.

As Grant asks in her piece, who actually benefits from reducing people to tragic circumstances? We hear a tragiporn story about a 29-year-old who has to stay in bed all day. We hear about her diagnosis, her illness, everything about her life that we hope won’t happen to us. Then, to quote Grant, we

take from it a gush of feeling, and then move on. We’ve consumed. Now that we’re done with it, we can put the body back in its place.

 

 

Women with ME/CFS on the line

Posts

Amid the hectic scramble to get the new Just A Spoonful episode out this week, plus other deadlines, I forgot to tell anyone that I did a radio interview with Melbourne’s 3CR last week! But I did, and it was a thought-provoking (for me) chat with Amy Middleton, host of Women On The Line and editor of Archer magazine. Here’s the link, or you can listen below:

I’ve listened back to it and lawd, I was so fatigued that day. Battling through some epic brain fog.

We talked about women and chronic illness, specifically myalgic encephalomyelitis/chronic fatigue syndrome (and I go into why the name of this particular illness is confusing and significant). We had time to go beyond talking about “what it’s like” living with ME/CFS and to get into the difficulties accessing a diagnosis, let alone treatment.

Amy asked for my thoughts on the overrepresentation of women in ME/CFS (more women are diagnosed with it than men), and while my answer was mostly speculation, it has sparked an interest in me to look deeper into this statistical anomaly. Could ME/CFS’s lack of funding be linked to its overwhelmingly female patients? Sounds a bit conspiracy-theory, but who knows. The more I learn about gender bias in medicine, the more alarmed I become.

Anyway, I really enjoyed the interview, and I hope you will too! If you’d like to read some of my writing about ME/CFS, here’s my Seizure piece from last year, ‘How To Talk To Sick People’, which I recently read aloud to an audience for the first time and oh my god, so snarky.

To be frank

Posts, Selected Posts

If you’ve been following me on Twitter or listening to my podcast, you have probably gleaned that I’ve been having a severely rough time for the past few months. As I mention often, I live with ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), which is difficult at the best of times, and over the past 18 months it has been steadily getting worse. It means I can’t do things as perfectly as I would like, for example finishing The Other Movie Project with 12 shiny monthly instalments sitting in my archives. Instead, the blog posts kind of tapered away while my health got worse. This annoys me. This annoys me a lot.

I like to do things well. No – I need to do things well. It’s a personality trait that gets me good things and also bad things. The same people who tell me to take it easy on myself are also the ones usually telling me how “naturally good” I am at something. “You’re just a natural!” It sets my teeth on edge: I’m good at stuff because of how hard I’ve worked at it. If I stop putting pressure on myself, surely the praise will stop, too.

This is a thing I am working on within myself. I’m trying to do everything at 80% instead of my usual 120%. I would tattoo “TAKE IT EASY” on my forearm if that wasn’t a rather extreme tactic and a bit counterintuitive.

As a chronically ill person, I’ve had to adjust my personal standards, to be pleased that I managed to take a shower today instead of taking that as a given. I still get frustrated, comparing where I’m at now with the ideal, healthy life I thought I’d be living. When I became disabled it felt like I was transitioning out of “the world” and into “sick person land”. It still feels that way sometimes, but now I try to lean into it.

Actually, I still live in the world.

I’m telling you all this so you’ll understand what this means to me:

IMG_3412.JPG

In the new Frankie magazine that came out on Monday, they feature me in a showcase of young creatives doing interesting things in 2016. I did the photo shoot and interview for the Frankie feature when I was at one of my very lowest points, physically and mentally. The acknowledgement of my career and my work gave me a huge lift. And I wasn’t being singled out as a “disabled person to watch” or even a “woman to watch” (which is always nice but kind of feels back-handed) – I was recognised just for being creative. For what I do!

Look what sick people can do!

We do things!

Flipping through the magazine, or being on ABC Radio lately, I’ve been having moments I wish I could send back to my teenaged self while she grappled with her new diagnosis. She’s hoping that she’ll be a writer and be in magazines and talk on the radio one day, and she can’t see a way to doing any of that while she has ME/CFS. She’s desperate for the illness to go away forever. I daydream about going back in time and telling her it won’t, it will come back and stay, her worst fear will come true. I’d also tell her that while she is disabled by illness, she will: perform poetry at the Sydney Theatre Company; be invited to teach workshops at a university (she’s a real nerd, she’ll love that); see her writing published in a book; be interviewed on triple j (she’s 16 and triple j is everything, this will freak her out); get PAID to tell jokes; and do a photo shoot for a fashion magazine. And sometimes these cool fun things will coincide with the absolute worst dips in her health, or will even happen because she’s sick.

But she probably wouldn’t believe me tbh.

July: Trainwreck

Posts, The Other Movie Project

Welcome! This is The Other Movie Project, a blog series where I watch movies released near me that are not about white men. I’ve been doing this since January 2015, and movie review website A Good Movie To Watch published my summary of my experience so far (you can read it here). Now, let’s see what movies were released in July that were about anyone, literally anyone other than a white guy.

1. Trainwreck

When my partner and I bumbled into our local cinema looking for Trainwreck tickets, we were annoyed/thrilled to find the session completely sold out and a line out the door. This was a great day for women in comedy! And an irritating 20-minute drive for us to a different cinema! But the fact that a rom-com written by a woman based on her own life was selling out theatres couldn’t take the sting out of the poster we saw that had no mention of Amy Schumer’s name. The poster said, instead, “TRAINWRECK: FROM THE GUY WHO BROUGHT YOU BRIDESMAIDS”. Fuck you, poster. You might as well have said, “TRAINWRECK: REMEMBER THAT OTHER COMEDY ABOUT WOMEN YOU ACTUALLY LIKED? DON’T WORRY A MAN IS BEHIND THIS!” They didn’t even say “Judd Apatow”, which would have capitalised on his name recognition. Just, “the guy”.

Okay, so, infuriating advertisement of a comedy by one of the most popular comedians of the moment aside, how was Amy Schumer’s debut feature film? It was good. Flashes of brilliance in an unremarkable setting, like a diamond set in tin. If you’re expecting Trainwreck to subvert the rom-com genre (based on Schumer’s genius skewering of tropes on her Comedy Central show Inside Amy Schumer), you might be disappointed. Trainwreck is less of a subversion and more of a disruption; it’s the rom-com we could have been having all these years if rom-coms weren’t so awful.

you-just-lost-a-guy-in-10-days

Yes, please, go away.

Meg Watson at Junkee wrote a great article called Trainwreck May Not Be A Feminist Masterpiece – But In A Rom-Com This Good, Does That Matter?’ and you know what, it’s so good, I think you should go read it now. Like, actually click out of this blog and go read Meg’s article. I’ll wait.

Welcome back!

I do disagree with Meg on one point: Schumer’s love interest (Bill Hader) does tell her that he cares about how many guys she has slept with. I think he explicitly says to her face, “I am bothered by how many guys you have slept with.” He tells her that he doesn’t “feel safe”, but that is never expanded on. Is he worried about STDs? That she’ll cheat on him? They never have that conversation and it seemed like a disappointing slide into slut-shaming by a writer who is supposedly sex-positive.

But Schumer brings so much heart to this film – and lacerating wit – that it lands well. Her relationship with Bill Hader’s character is refreshingly sweet and based on them actually getting along. I enjoyed this take on the rom-com format where the couple gets together because they like each other, and not in spite of mutual antagonism. The conflict comes when their relationship is tested by circumstance: Amy suffers a personal loss, she is worried she’s about to lose her job, and Hader’s sports doctor is under pressure from his mounting profile. It’s so much more enjoyable than the usual “they are secretly working for each other’s enemies” or whatever trope usually props up the romantic tension, because the stakes feel more real. There you can sense the hand of Apatow – a belief that stories about regular (albeit white and privileged) people can be interesting, too.

Trainwreck is a lot of fun and surprisingly sweet. I hope more romantic comedies turn out like this one.

Oh, and LeBron James is so fucking fantastic in this film. It isn’t even fair. He’s the best at basketball and can do comedy acting? Stahp.

Other movies released near me in July that were NOT about white men:

(The ones I didn’t have time to watch)

2. Madam Bovary

3. Amy

 

Number of movies released near me in July that WERE about white men:

Seven.

That’s more than twice the number of films about women.

Aaaand not one film about a person of colour.

 

A note about the film Stonewall

In February, we saw Selma hit cinemasthe first theatrical movie to feature Martin Luther King Jr as a main character, and a film about “the political and emotional peak of the modern civil rights movement“. This year we are also getting a theatrical film about the Stonewall Riots, “the pivotal LGBT+ equal rights event”. Stonewall is about the activists who started the riots and are credited with kicking off the Pride movement. According to history, key figures in these riots were two transgender women of colour, Marsha P Johnson and Sylvia Rivera. God, I would love to see a movie about this story. But I can’t watch Stonewall for The Other Movie Project. Why? Stonewall is about a white man.

Diogo, a reader of The Other Movie Project, brought to my attention American transwomyn of colour Pat Cordova-Goff, who is calling for a boycott of Stonewall. The petition says:

History classes throughout our nation have built a reputation of instructing young generations that white, straight, cis folks are the saviors and founders of this land. Wrong.

 

Do not support a film that erases our history. Do not watch Stonewall.

Erasure matters, and can have violent consequences. When we only or mainly see white people/men/cisgender people playing significant roles in our historical narratives, it justifies the further marginalising of people of colour, women and transgender people. It reinforces the idea that non-white-men don’t matter, or don’t matter as much.

I’m disappointed that Stonewall doesn’t qualify for The Other Movie Project. I’m disappointed that we could have had a big-budget film about two real-life incredible trans women of colour and instead got another offering about a fictional white cis male. This seems especially dopey considering we are living at a time when the transgender community is becoming more visible than ever, particularly thanks to two real-life incredible trans women of colour, Laverne Cox and Janet Mock.

Okay, I’ve had my say about it, but since I am a cisgender white woman I suggest you don’t listen to me about this but go and click on all the links in this section. 🙂

 

 

 

 

The view from six months in

Posts, The Other Movie Project

It has been six months since I started The Other Movie Project. On New Year’s Day, 2015, I vowed that I would watch every movie released near me that did not revolve around a white guy. Most movies we see here in Australia are about a white male character; I was interested in the stories about everyone else – the other movies. At first, it was an easy gig; January was quiet. There was only one movie that really qualified for the project: Reese Witherspoon’s Wild. Slim pickings for women and people of colour who wanted to see stories about them (and this one movie was about a white woman, so, really not great for people of colour). But Wild was so vibrant, so different to the storytelling I was used to seeing at the cinema, that I couldn’t wait for the rest of the year.

I’m interested in representation. For two years, I spent every Sunday co-hosting a feminist radio show on community radio. I’ve been writing intermittently about women in film for some time. But I wanted to challenge myself to see more films, gather more intel on what is available to movie-goers. And then I read this article on Colorlines: ‘Study Finds White People Don’t Watch Black Movies. Who’s To Blame?’

Dear White People (2014)

(Hint: it’s white people.)

The article notes that people of color are underrepresented across all aspects of the film industry. It’s notoriously hard for non-white actors to find roles, let alone good roles, let alone the kind of starring roles that kickstart a successful career. Studio executives get nervous that casting non-white people in important roles will put audiences off – because, y’know, the white experience is universal and everything else is niche. Right? Well, it turns out this bias may not be (just) a top-down cultural conspiracy, but the market responding to consumers. The study featured in the Colorlines article found that “‘minority cast members’ do in fact lead white audiences to be less interested in seeing certain films.”

Like, holy shit. That’s pretty damning. The industry exec’s are shovelling whitewash down our throats because we are kind of asking for it. And when I say “we” I do mean white people.

I realised that I was guilty of this bias, too. How often did I seek out movies about characters who were Black, Asian, Middle-Eastern? Yet how often could you find me searching “Anne Hathaway movie” on YouTube late at night, yelling “take my moneyyy”? I am a white person, comfortable in an entertainment culture that is insanely whitewashed. (I don’t even want to talk about The Last Airbender.) OK, so maybe I’m not that comfortable with it anymore. Some things can’t be unseen. I dearly hope that means I’m growing.

Geena Davis, whose Institute on Gender and Media is collecting critical data on the disappearance of women on screen and behind the camera, has said:

[M]edia images exert a powerful influence in creating and perpetuating our unconscious biases. However, media images can also have a very positive impact on our perceptions.

Before this project, I’ve self-imposed filters on the stuff I watch before, to great positive effect. There was the year I cut out all romance narratives from my life. Movies, books – if they were in any way classified as ‘romance’, I was out. It drove one friend of mine crazy (sorry Tiff), as she tried to introduce me to The Lizzie Bennet Diaries. But LBD is a Pride & Prejudice adaptation, which is kind of romance, so I refused. (As soon as the year was up I binge-watched that puppy, all 100 episodes, and hooo it is good. I was pleasantly surprised to find it is mostly about the relationships between Lizzie Bennet and the women in her life, and has a bunch of non-white actors who are just there, no big deal, just acting, just not being white.) Cutting out romance was just what I needed to purge some toxic gender-role bullshit about relationships from my mind and soul. After 12 months without any exposure to Matthew McConaughey shushing women, I felt better able to engage with romantic narratives without letting their sinister voices get inside my head.

At the end of last year, I realised – with the help of people smarter than me explaining it to me on the internet – that I would need to actively seek out movies with better gender and race representation. Movies like Jurassic World and Ted 2 (good god) would be thrown in front of my eyes on buses and billboards all the time, but I’d need to work a little harder to filter out the white-dude bias.

Which brings me to The Other Movie Project. I wanted to have a regular film writing project, while challenging some internalised bias and hopefully making my feminism more intersectional. So I thought I’d try filtering out the white guys for a while. Of course you can’t get rid of them completely, because they’re everywhere (again, The Last Airbender), but I decided to avoid narratives where the point-of-view character was a white man. I’ll talk about the practical difficulties in doing this in a moment. The Other Movie Project was designed to road-test industry statistics about film, in my little pocket of suburban Brisbane, Australia. Would the line-up at my local cinema be a vanilla sausagefest?

It’s the beginning of July and results are mixed. January saw just one movie that was actually about a woman, 14 movies about white men, and zero about people of colour. February, the ratio was about even (that is, “white men” to “everyone else in the world”). In March, things got bad again, with only five films qualifying for the project, and 19 films about white dudes going unwatched by me.

Since then, though, the number of films about (white) (usually blonde) women has been skyrocketing. I have not been able to keep up with my viewing quotas. And unfortunately, foreign-language films and movies about anyone who isn’t a white man or woman don’t seem to get many sessions at the cinemas, so if I miss a couple of days, I miss the film. A lot of what I watched during busy months ended up depending on what was showing on the days I did feel well enough to go to the cinema. (I live with a chronic medical condition, more on that over here if you’re interested.) Since movies like Pitch Perfect 2 were given plenty of sessions, I was more likely to see them. Movies like Salut D’Amour, however – a South Korean romance-dramedy about two older people re-learning how to date – seemed like they flitted through the cinema on a breeze and were gone.

Salut D'Amour, 2015

The worst, the very worst thing about doing The Other Movie Project – that has been researching people’s ethnicities to find out if they are “white”. Or, “how white they are”. Oh, it is awful and I regret this parameter. On one hand, people have been helpful in alerting me to actors whose non-white ethnicity is often erased in pop media (case-in-point, Vin Diesel, who identifies as a person of colour, which I did not know until Twitter told me). This has given me a better understanding of how racial identity is constructed (and, tangentially, a better appreciation for the Fast franchise, which I plan to watch asap). On the other hand, nothing makes you feel like a gross person so much as typing “What is Carl Barron’s ethnicity?” into Google. (The only results were from white power forums.) All I can say is that my reading for this project (along with the zillion think-pieces I’ve read on Rachel Dolezal, because internet) have helped my thinking become much less … no I’m not going to say “black and white”. But, that.

When I set the terms for this movie filter six months ago, I knew that I might not be able to meet all of them. And I haven’t. April is completely missing from the project as I was directing/co-producing a play and everything else kind of fell by the wayside. June is gone too, as I spent half of that month being too ill and the other half staying somewhere with no cinema. And there have been movies I thought qualified that, upon watching them, turned out to be about white guys, as well as movies that probably qualified but promoted their white male lead like it was going out of fashion (it is, heh).

Thank you for (still!) reading this. We’re at the halfway mark now, so I will regroup, gather my cinema coupons (one wonderful Twitter friend sent me cinema coupons! How great are people), and hit the cinemas for July. Wish me luck. I’ll see you for next month’s blog post, when we will be back to our regularly scheduled program of non-white-guy movie reviews.

 

 

May: A Pitch Royal Tomorrowland 2

Posts, The Other Movie Project

Welcome to The Other Movie Project! (Please click on the link if you are not sure what the Project is.)

I am back and tireder than ever. If you follow my podcast Just A Spoonful you may know that I have Myalgic Encephalomyelitis, a condition as painful to live with as it is to spell. Since my movie load has bumped up to around 12 films a month – TWELVE, which is of course AWESOME – I have not been able to keep up with my viewing for this project. Between illness, other projects and my regular work, I hope you can understand why I might not get to every movie each month. Oh, and we’re calling April ‘the Gas Leak Month’.

Since my brain is in a state of constant brown-out I’ll just be updating this blog whenever I can get to it. I hope you don’t mind, and I really appreciate all the support you’ve been giving this project on Twitter. You all are the best. OK, let’s see what the non-white-guys were up to in cinemas near me this May. 1. A Royal Night Out

A promising set-up – two cloistered princesses, granted a rare night of revelry on the night the whole country is celebrating – unfortunately goes nowhere.

I guess it couldn’t go anywhere, really, since the subjects are real-life Queen Elizabeth II and her sister Princess Margaret. And since their family owns most of the British Isles it must be hard to take any great risks when portraying their story. (Although I’m sure 14 year-old Princess Margaret getting drunk in a ‘knocking shop’ will be risky enough for most senior audiences.) It’s charming to see the nineteen year-old Princess Elizabeth imagined as she might have been before the dour sovereign we’re all familiar with.

The film is based on true events – apparently the Princesses Elizabeth and Margaret did in fact slip out of Buckingham Palace on 8 May 1945 (the formal end of World War II in Europe) to go party with the rest of London. But A Royal Night Out makes the mistake of splitting up the princesses early in the movie (whose chemistry is the most interesting of the film), and chasing a dull romantic subplot instead. In the film’s imagining, Princess Elizabeth gets separated from her sister and enlists the help of a random Naval Officer, who plays the role of cranky commoner/love interest.

He is handsome and hates the King, she is pretty and the King’s daughter but it’s a SECRET, will they won’t they oh no class divides blah blah blah. Sorry, but it was pretty boring. Sarah Gadon as Elizabeth is great, but the invented Naval Officer ‘Jack’ is an embarrassing sketch of a working class Londoner. And even though Jack has a pretty sympathetic back story and a reasonably bleak future ahead of him, somehow we end up being positioned to feel sorry for the Royal Family? Sitting down for breakfast in their dining room the size of the war veteran’s house? And oh thank goodness Jack’s realised the King is actually a pretty good guy? Republicans will hate this.

I didn’t hate it, but I did realise very early into the film that I was not its target audience. My presence in the cinema must have brought the median age down to about 56. I’d thought, seeing as it was a film about two young women, I might be about to watch the pacey adventure of two bright, powerful and independently wealthy young women having their first exciting taste of freedom. That’s in there a bit – Princess Margaret steals most of the best scenes – but mostly it’s an unfocussed and slightly turgid love letter to the monarchy.

2. Kumiko, The Treasure Hunter

Twenty-nine year-old Kumiko is dissatisfied with her dead-end Tokyo job and shows no particular interest in her friends or family. At night she sits alone in her cramped apartment, fast-forwarding and rewinding an old VHS tape of the American film Fargo. And Kumiko is taking detailed notes.

She is convinced that Fargo was a true story, and that there is still treasure buried out there somewhere under the Minnesota snow. This premise is a little heavily laid-on, with what I thought were excessive cuts to Kumiko taking out her Fargo maps and staring at them. We get it, she wants to go to Fargo. We know it so well that, although I loved the film’s characterisation of middle-class life in Tokyo, it seems like a long time before Kumiko actually sets off on her quest. In fact, it’s about 45 minutes before the film gets to Minnesota. I began to get impatient during the first half of the film, wanting to set off on the journey already, thinking “Why are we still here??”. Afterwards I realised, hey, that was probably exactly how Kumiko felt. And I was empathising with her. Well played, Zellner Brothers.

The thing is, Kumiko is kind of a jerk. She is surly, she lies, and she seems to have no compunction about stealing – even from charity shops and visually impaired taxi drivers. She is rude and unfriendly and ungrateful for the kindness of anyone who helps her. And that doesn’t change, all the way through the movie. She definitely doesn’t learn the error of her ways. But I found myself wanting her to succeed. Kumiko clearly has difficulty connecting with other people. Her only friend is Bunzo, her pet rabbit (who is actually called Bunzo in real life and I want to break all of Queensland’s laws to adopt it). Kumiko is fed up with banality.

She styles herself as a Spanish conquistador and sets off for The New World to claim the treasure she has ‘discovered’. And that’s the thing about conquistadors – I don’t remember them having much compunction about taking other people’s stuff. Looking at it from Kumiko’s view, her mission makes perfect sense. This treasure is her destiny, why would she lose focus on it for even a moment?

Rinko Kikuchi, as Kumiko, is simply perfect. Using little more than facial expression, she brings complexity to a character that could easily have been under-served by the spare script. Her physicality is impressive, almost clowning – but a tragic clown.

Knowing a little about the real events this film is based on, I wondered how the Zellner Brothers would bring this sad tale to a satisfying close. I was wondering that even up to the final minutes of the film. But, they actually nailed it. And the film never smashes the prism of enchantment that hangs around it. It probably helps to be a fan of Fargo (the movie), but I didn’t find that tripping me up in any way. Kumiko, The Treasure Hunter is a beautiful film.

cynthia-rose-bellas3. Pitch Perfect 2

Full disclosure here: Pitch Perfect is easily one of my favourite recent comedies. I have watched it more times than I would like to disclose. I knew I was probably not going to be satisfied with the sequel, no matter what they did, because the original was so precious to me.

I was correct. Pitch Perfect 2 suffers from too many locations, unnecessary exposition, and too many new characters added to an already beefy cast. This was too bad because I adore Elizabeth Banks, producer on Pitch Perfect and first-time director on Pitch Perfect 2, and hoped her directing debut would be as excellent as she is. However I couldn’t help noticing the awkward edits undercutting scenes where the comedic talent was so good that all you needed to do was get out of their way.

But again, my expectations were set high for this film based on how quick and funny I found the first one. There are moments of brilliance and genuine heart-feelings. There are some fun developments in the sequel, like old a capella rival Bumper having graduated and joined the team of sad toolies who haunt campus parties insisting they’re still relevant. And a particular scene involving a canoe makes full use of Rebel Wilson as a comedy actor and singer. This movie is a feel-good spectacle and I enjoyed the ride, minus several cringes at fat shaming, American flag-waving, and bafflingly frequent jokes about Guatemala. Guatemala? What did they ever do to you??

Full credit to Elizabeth Banks for continuing a franchise helmed by a team of funny women whose motivations have nothing to do with men. Even in heralded ‘female comedy’ Bridesmaids, the plot centered around a hetero wedding. And Kristen Wiig had to show her emotional development by getting together with the Irish policeman. In Pitch Perfect 2, the women’s focus is on community, self-fulfillment, and the legacy they will leave behind. Relationships with dudes are secondary.

All that being said, the movie’s main conflict is kicked off by the world getting furious about seeing Rebel Wilson’s vagina. A subtle critique of misogyny and cultural anxiety about the female body? Or just a way to be edgy and show people screaming at a vagina? I don’t know, I’m tired. I liked this movie okay?

Final comments: more Ester Dean, always and forever. Look at how much Ester Dean you’ve put into your film, then double it.

Athena quietly wishes they had come up with a better name than Tomorrowland.

4. Tomorrowland

This tweet sums up my exact reaction to seeing this film:

I loved it? This was one of those films where you feel good during the ending, but as you walk away from the cinema you’re like, “Wait, why did they? And where was the? And they killed all those people??”

Tomorrowland was not what I expected at all. The trailer did not do it any favours. It was intense, well-paced, and juuuust this side of tacky. The movie is about a sort of parallel dimension called Tomorrowland where everyone rides monorails and wears jumpsuits and anything is possible. It’s basically Disneyland in the 90s. I was a kid in the 90s, and for me the gleaming monorails and curving concrete structures immediately evoke the dream of the future that Disneyland was selling: clean, shiny, the happiest place on Earth.

And like Disneyland in the 90s, Tomorrowland is in decline. The world is losing hope. They need heroes to change the direction of the tide, to move the world back from the brink of destruction. This can only be done by ‘special’ people, like the cringingly named protagonist, Casey – sigh – Newton. Oh guess what she loves science! And she is apparently still in school even though she looks 25 and drives a motorbike around? I found this a genuine impediment to believability in the film, although this may be a cultural divide between America and Australia. Or maybe I’m just a city girl who wishes she was allowed to have her own motorbike in high school.

Even though the world must be saved by people with ‘special abilities’, I didn’t find this exclusionary or, the gods help us, Randian, because their special ability is optimism and it is infectious. The heroes are people who ‘haven’t given up’, who do the work that needs to be done and pull everyone else up with them. Eventually we could all be heroes. It is a beautiful sentiment and I found the ending quite moving despite its potential to be cloying.

How was this movie not cloying? Well, it has some pretty kick-ass fight scenes involving a 12-year-old girl named Athena who can drive a truck like it’s stolen (it is; she stole it). There are fun cameos from Keegan Michael Key and Kathryn Hahn. George Clooney has a great face. But the reason I really liked it was because it slow-walks the viewer through the actual threat facing the world and how the heroes prevent it.

This is a movie for young people. Like many contemporary young adult narratives, it is weighted down with the horror of the broken world we must inherit. Failing economies; inaction on climate change; society-wide distrust and violence. It’s sad. But Tomorrowland offers realistic hope: don’t give up on the world. Despair only causes more despair, but hope encourages more hope. Hugh Laurie delivers a magnificent speech towards the film’s climax about humanity’s choice to let the world burn if it meant they didn’t have to do anything. A Disneyfied riff on the kind of movie I was watching when I was in high school, when Hugo Weaving was telling Keanu Reeves “human beings are a disease”.

Tomorrowland has the classic Disney race problem. Oh sure, there are plenty of diverse ethnicities represented in the background and bit parts, but funnily enough all of the lead roles (and nearly all of the dialogue) goes to white people. It becomes more obvious when you see plenty of Asian, black and Indian people walking around Casey and co. but only hear white people speaking.

Oh and George Clooney is just trolling us now, with his biggest age gap yet: his love interest in this film is 12 years old. He is 54. Nothing really happens, but more happens that it should, you know? It’s borderline is what I’m saying.

But still, I liked Tomorrowland. I think I liked it? So much happened. Wait, why did they kick George Clooney out of Tomorrowland in the first place? And why didn’t he have a relationship with anyone other than a 12-year-old cyborg since he was 18? Oh damn, I don’t think this film made sense at all. Never mind.

Other movies released near me in May that were NOT about white men:

(The ones I didn’t have time to watch!)

5. PIKU (India)

6. Unfriended (US)

7. Testament of Youth (UK)

8. Bombay Velvet (India)

9. Salut d’Amour (South Korea)

10. Spy (US)

11. Woman In Gold (US)

12. San Andreas (US)

Number of movies released near me in May that WERE about white men:

SIX! Holy shit, well done film industry!

mad-max-fury-road-mask

*Rages incoherently*

A word (or 200) about Mad Max: Fury Road

A few people have asked me if I was going to review Mad Max: Fury Road for The Other Movie Project. Now, I freaking LOVED this film, but it doesn’t qualify for this project and here’s why:

a. It is about Mad Max.

b. Mad Max is a white man.

End of list.

I know many people have been arguing that the film is actually about Imperator Furiosa (the wonderful, WONDERFUL Charlize Theron), but for the purposes of this movie blog, it is not. The movie, titled MAD MAX, follows the story of MAD MAX while he comes to terms with his identity as MAD MAX. We hear his inner monologue, see most of the film from his point of view, and he has the biggest arc. (He goes from angry guy only worried about himself, to angry guy helping a group of women and one cute warboy.) Yes, Imperator Furiosa is the more interesting protagonist and I would follow her into the gaping maw of Death itself. But we only find out her internal workings through what she tells Max and what Max sees when she finds her old tribe. However, I hear rumours that the next Mad Max film will be officially and unreservedly about Furiosa, and WOULDN’T THAT BE FUCKING COOL. If I’m mistaken and the rumour isn’t true, let’s all find George Miller’s email address and make it true.

Now, please excuse me while I start building a pretend prosthetic arm in time to cosplay as Furiosa for Halloween.

My hero.