May the 12th Be With You [transcript]

Just A Spoonful Podcast, Posts


12 May 2016 was a different time. COVID-19 didn’t exist, I had a different surname, we were all still referencing Serial, and the PACE trial hadn’t been made to release their data yet. But sadly, a lot of the facts I reported in my audio documentary on ME/CFS, ‘May the 12th Be With You’, are still relevant.

I released the short doco on my podcast and on 4ZZZfm Community Radio Brisbane on the 12th of May 2016, the annual awareness day for myalgic encephalomyelitis/chronic fatigue syndrome. I live with ME/CFS, like hundreds of thousands of other people in Australia. It is debilitating and we only face more challenges with the ongoing SARS-CoV-2 pandemic. I’m hoping the new patient population of people with long covid, another debilitating disease with a lot of overlap with the ME/CFS patient population, can benefit from the existing decades of advocacy being done by people with ME/CFS.

May The 12th Be With You is a brief overview of ME/CFS – the disease’s impact on people, the history of the diagnosis, and the controversial treatments. I tell it with a light touch in keeping with the vibe of my podcast, Just A Spoonful, hoping to intrigue newcomers with this medical mystery. I even commissioned a musician to record a ‘Serial-style’ cover of the Just A Spoonful theme song, ‘Sleepless’ by Anna O.

This is an independent documentary that I completely researched, wrote, recorded, produced and edited myself. I was able to make it thanks to the financial support of my Patreon. I made it on a shoestring and everyone you hear on it volunteered their time just to raise awareness. If I made it over again, I would do some things different – I would talk about post-exertional malaise, and I would perhaps not go so easy on graded exercise therapy. I could not include everything I wanted to say in this short doco, and I was of course battling through fatigue and cognitive dysfunction to make it. I’m grateful to everyone who listens to it, and to all the other ME/CFS advocates who have taught me so much and who keep fighting for a better quality of life for everyone with this disease.

You can listen to the 19-minute documentary on my Soundcloud or anywhere you listen to Just A Spoonful podcast.

Here’s the transcript of ‘May The 12th Be With You’, 12 May 2016.


In order of appearance: Kaitlyn Blythe, Suze Mackenzie, Russell Fleming, Lefa Singleton Norton, Sasha Nimmo, Ricky Gervais [stand-up recording], Nathan Butler.

Kaitlyn Blythe  00:00

[Serial-style piano cover of ‘Sleepless’ by Anna O.] From the Just A Spoonful podcast in my house in Brisbane, it’s May The 12th Be With You. One medical mystery told over one episode, I’m Kaitlyn Plyley. It debilitates anywhere between 92,000 and 598,000 Australians, and more than 28 million people worldwide. But do we really know what chronic fatigue syndrome is? [Pensive music.]

Suze Mackenzie  00:44

As so many people’s story is, I’d been overdoing it and I was working full time, studying part time for my master’s, playing sport.

Russell Fleming  00:53

I think I was 29. 

Lefa Singleton Norton  00:55

I still remember the day really clearly,

Suze Mackenzie  00:57

I even fell up the steps of a tram, I was that exhausted. 

Russell Fleming  01:00

It was a rapid onset. 

Lefa Singleton Norton  01:02

I’m having a breakdown.

Suze Mackenzie  01:05

I just can’t move. It must be some kind of neurological thing happening in my body. I don’t know.

Russell Fleming  01:12

You know, when they offered me an ill, an ill health retirement pension, I couldn’t believe it.

Sasha Nimmo  01:19

You’re going to be this sick for probably the rest of your life and your life expectancy will probably be about 25 years shorter.

Kaitlyn Blythe  01:39

There isn’t even widespread agreement on what to call it.

Russell Fleming  01:42

Myalgic encephalomyelitis.

Suze Mackenzie  01:44

Chronic fatigue syndrome.

Sasha Nimmo  01:45


Kaitlyn Blythe  01:46

And I’ve been calling it “encephalomyelitis” [where the “c” is pronounced like an “s”] for all these years. Whoops. For the purposes of this story, I’ll say ME/CFS, but I acknowledge that even that label is contentious.

For context on the prevalence and impact of ME/CFS. It is most often compared to multiple sclerosis, known as MS, for having a similar devastating effect on patients’ bodies. Both ME/CFS and MS are classified as diseases of the central nervous system by the World Health Organisation. Both can be fatal. 2.5 million people are living with MS worldwide – 25.5 million less than the lowest estimate of people living with ME/CFS. Around 23,000 Australians have MS – and remember, the lowest estimate of Australians with ME/CFS is 92,000. Yet MS is the subject of much research and widespread awareness campaigns. Remember the MS Readathon? I did it every year in primary school. But there is a little awareness of ME/CFS. Worse, there are widespread misperceptions and stigma. 

Ricky Gervais [stand-up recording]  02:49

Saw someone collecting the other day for ME. Not MS. Not the crippling wasting disease. Oh, no, ME. That’s the one where, don’t feel like going to work today. [Audience laughs. Gervais imitates a phone ringing and affects a  mocking voice.] “Oh, ME!”

Kaitlyn Blythe  03:06

[Hopeful music.] Where did these misperceptions come from? Why is there so much confusion around this diagnosis? May the 12th Be With You hopes to clear up some of the confusion, or at least explain why it exists. In the next segment, I’ll investigate why these patients have been left behind. It’s a story that goes back decades and, at times, makes very little sense. [END OF SEGMENT 1/3]

Kaitlyn Blythe  00:00

So why are potentially hundreds of thousands of Australians stuck in their beds, stuck in their houses, with disabling fatigue and pain, unable to participate fully in life? Why are they being overlooked? And why are they sick? ME/CFS has no collective diagnostic criteria. That means that doctors around the world and even within Australia are not all working off the same list of symptoms. There are like half a dozen different diagnostic criteria floating around. So a person could be diagnosed in Australia with ME/CFS in say, 2002 for example, like me, and have received very different treatment to someone diagnosed with ME/CFS in say the UK three years earlier in 

Russell Fleming  00:44


Kaitlyn Blythe  00:44

That’s the voice of Russell Fleming, a UK based ME consultant Skyping in from Cornwall to chat to me. He is a friendly ex banker who had to leave his full time job because of the disease, and now uses what energy he has to do ME advocacy work. He repeatedly apologized for not being able to speak as concisely as he would have liked – something nearly everyone I interviewed for this story apologised for, including me. Cognitive difficulties and concentration problems are one of the symptoms of MECFS, and we all have it. However, it doesn’t affect our knowledge or expertise. It’s more like all the information is still filed away in the stacks, but we can’t find the index cards. Russell and I compared notes on our diagnoses. The label that my Australian doctor wrote down in 2002 was chronic fatigue syndrome. But Russell was diagnosed with myalgic encephalomyelitis by a UK doctor in 1999. So that’s like, three year gap and very different names.

Russell Fleming  01:43

Well, the name myalgic encephalomyelitis has always traditionally been the name since Melvin Ramsey first started talking about it in the 1950s-60s.

Kaitlyn Blythe  01:54

Dr Melvin Ramsey was an infectious disease specialist who was an outstanding authority on ME until his death in 1990. He was present for an outbreak of the illness at the Royal Free Hospital in London in 1955, which precipitated Ramsay’s research into the disease and increased worldwide interest in ME. Ramsey called it a baffling syndrome with a tragic aftermath.

Russell Fleming  02:17

He concluded that, you know, in his opinion, there seem to be some sort of inflammation going on within the brain.

Kaitlyn Blythe  02:25

The inflammation of the brain theory, from which the name myalgic encephalomyelitis comes, has not been borne out by subsequent research. But Ramsey was correct in identifying that there was a physical cause for this condition. His definition didn’t last long, though, because, in Russell’s words,

Russell Fleming  02:43

“A couple of psychiatrists got hold of it. And they decided it wasn’t that at all.”

Kaitlyn Blythe  02:50

Those psychiatrists were Colin P McEvedy and AW Beard, who in 1970 proposed that ME was actually a psychosocial phenomenon caused by mass hysteria.

Russell Fleming  03:01

And out of that became “chronic fatigue syndrome”.

Kaitlyn Blythe  03:04

Their conclusions were later refuted, and in 1978 the Royal Society of Medicine concluded that ME is a distinct disease entity.

Russell Fleming  03:12

And in about 2007 the National Institute of Clinical Excellence, or “NICE”, produced a guideline, and we have “ME/CFS”.

Kaitlyn Blythe  03:25

But the stigma continues to stick to the diagnosis, and has influenced many of the sets of criteria that inform your local GP on what to think. You can see how it would be tempting for healthcare providers to believe that ME/CFS is simply psychosomatic. Then you can locate the so-called “problem” with the patient, explaining chronic and baffling symptoms with the reasoning that the patient on some level wants to be sick. Recognizing ME/CFS as a physical disease has also met resistance throughout the decades due to other factors, like medical insurance companies benefiting from not having to cover a psychosocial illness, or government welfare departments not having to pay pensions to people with ME/CFS if it’s just “all in their head” (never mind the damage that those attitudes do to people with mental illnesses). 

Back to Melvin Ramsey, who up until the final year of his life was deeply concerned with the confusion surrounding an MECFS diagnosis. To quote him: “The failure to agree on firm diagnostic criteria has distorted the database for epidemiological and other research, thus denying recognition of the unique epidemiological pattern of myalgic encephalomyelitis,” end quote,. There is still no test for ME/CFS. A diagnosis of the disease is a diagnosis by elimination, ruling out all other known illnesses. In March this year, Griffith University’s National Centre for Neuroimmunology and Emerging Diseases announced that they had quote, “identified new markers that can be used to screen patients,” end quote. I contacted the Centre for comment but they were unavailable and called me “Rebecca”. 

If Griffith University’s researchers have indeed found that biomarker that the ME/CFS community has been waiting for, then this is a big deal for Griffith University. Groundbreaking research that could help millions being done right here in Brisbane. It’s incredible to think that this progress is happening right down the road from me. However, there are still many hoops for the scientists to jump through before their research becomes anything resembling a medical test. All going well, we’re still years off being able to screen for ME/CFS. 

So, we still don’t have a reliable apparatus for actually determining who has this illness. There’s also no cure. … Or is there? [Hopeful music.] Some people believe that you can recover from ME/CFS. Are they right? That’s coming up in the next and final installment of May the 12th Be With You. [END OF SEGMENT 2/3]

Kaitlyn Blythe  00:00

So, to recap: there is currently no way of testing for ME/CFS, anywhere between 92,000 and 598,000 Australians are debilitated by it, and there’s no cure coming for them.

Sasha Nimmo  00:13

Statistically, there’s about a 5% chance of a full recovery and your chances are better if you are younger. About a third of patients get a little bit better or better to some degree. About a third of patients stay the same and about a third of patients get worse.

Kaitlyn Blythe  00:32

That’s Sasha Nimmo, a former science communicator with CSIRO who had to leave work when she became ill with ME/CFS four years ago.

Sasha Nimmo  00:40

I’m in the third who are getting worse. 

Kaitlyn Blythe  00:43

We Skype each other from our living rooms, and while we’re talking a chocolate-coloured poodle named Muddy climbs into Sasha’s lap for a cuddle. I instantly fall in love. Sasha and I talk about the grief of not being able to go out walking with our dogs anymore. And two days later, she tweets me that Muddy has brought autumn inside to her with yellow leaves stuck in his hair. [Sound of a strong wind blowing through leaves.] When Sasha was diagnosed, her doctor told her she would definitely be better within 12 to 18 months. This is a common story among ME/CFS patients. She’s not sure if the doctor truly believed this, or if he just didn’t want to take away her hope for recovery. The placebo effect might work if the illness is psychosomatic, but with a disease like ME/CFS, this attitude can be downright harmful. Sasha explains why.

Sasha Nimmo  01:41

I didn’t take it seriously enough. I thought, took it as a given that I was going to get better. And if I had known that I wasn’t – about what my chances were – I would have rested more instead of pushing.

Kaitlyn Blythe  01:57

Pushing and crashing is a common issue with ME/CFS patients. It’s the harmful cycle of doing more than you’re able and then experiencing disproportionately worse symptoms for days, even months. It’s also known as booming and busting. This vicious cycle is something that self described CFS warrior Suze Mackenzie is trying to avoid.

Suze Mackenzie  02:18

It takes a lot of discipline to keep my mindset on the right path.

Kaitlyn Blythe  02:24

Suze Mackenzie is a former editor and journalist who had to give up her career when she became ill with ME/CFS. She left her thriving social life in Melbourne and returned to her parents’ farm to recover. That was two years ago.

Suze Mackenzie  02:38

So I spent about six months very sick and then got to the point where I could do a lot more. So then I went into what they call the push-and-crash cycle of you know, either through adrenaline, or caffeine or just sheer stubbornness. I would go and do things. And then, you know, it could just be going out for lunch with a friend and then I would spend a week crashing because of that. So then I wouldn’t do anything for a while and then I’d hate my life because I was so bored.

Kaitlyn Blythe  03:11

And so the cycle continues. Suze goes to a CFS clinic in Melbourne, where they teach her how to pace herself and stay inside her energy envelope. She also does a form of graded exercise therapy, which seems to be yielding results.

Suze Mackenzie  03:26

I can walk up to like 1400 metres was feeling fine and I do yoga every second day and this is all been–

Kaitlyn Blythe  03:32

That’s incredible.

Suze Mackenzie  03:33

Well this has been since November 2014.

Kaitlyn Blythe  03:37

Graded exercise therapy (shortened to GET) and cognitive behavioral therapy (CBT) are deeply controversial treatments for ME/CFS and spark serious feelings in the patient community. The reason being that having GET and CBT as the recommended treatments for ME/CFS appears to reinforce the stigma that it’s psychosocial and not a physical impairment. [Bright music.] Nathan Butler is an accredited exercise physiologist and the director of Active Health Clinic, which he established in 2008 to specifically treat patients with ME/CFS. He is the former coordinator of specialist inpatient and outpatient programs at the Austin Hospital in Melbourne, and while in the UK was involved with the controversial PACE trial.

Nathan Butler  04:29

I have to preface this that I’m not speaking on behalf of the authors of the Lancet. And my role within the trial was as one of the therapists in the graded exercise therapy arm. 

The design of the trial and treatment – so there were four treatment arms: there was the graded exercise therapy, cognitive behavioral therapy, pacing, and standardized medical care. With the graded exercise arm, we were allowed to talk about the physical aspects and deconditioning and reconditioning, but we’re not allowed to talk about pacing or an energy envelope. And we couldn’t talk about emotions and the impact of the emotional state on the fatigue. Now from someone who believes that exercise in itself is not the answer, but it’s a combination of a lot of things that lead to management, that was quite challenging. 

And so what it taught me was, you know, how graded exercise can be helpful and can help people, you know, physically, cognitively and emotionally. It’s not sort of what we promote, necessarily in the clinic. And pacing is first, followed by these other components, depending on the person’s needs.

Kaitlyn Blythe  05:33

GET and CBT were only recommended in the NICE guidelines for people with mild to moderate cases? So I mean, maybe it’s something that like, if you were going to recommend it for ALL cases of MECFS, you would see people with severe ME, who can’t get out of bed, being told “just exercise”, and – is that kind of where some of the misunder– maybe some of the interpretations that it’s dangerous are coming from?

Nathan Butler  05:59

I think anyone being told with ME/CFS just exercise is the wrong advice. But I think, I think first and foremost, we need to define what exercise is. And I think you know, we always get these views that exercise is going to the gym or pushing yourself or running. And it’s far from that. The way that we define exercise is any physical activity that elevates into your training zone. It’s above and beyond what you normally do. So any physical activity for someone who’s bed bound is literally sitting up. So I think it’s the awareness is only going to get better. We just need this initial research and we need to keep talking about it.

Kaitlyn Blythe  06:32

[Determined, upbeat music.] In the case of this illness, so called clicktivism could actually do a lot of good. Awareness raising is crucial to helping people with ME/CFS. Early intervention could mean a hugely better prognosis for patients. As it stands, you have to have symptoms for six months before you can even be diagnosed. Better awareness of ME/CFS as a “real” disease means patients will be quicker to see their GP, doctors will be quicker to reach a diagnosis, and patients can be learning to manage their illness before their muscles have deconditioned for months and bedrest. Not to mention the toll those first six months take on your mental health, when you have no idea what’s wrong with your body and no clue what to do about it. 

That’s why I named the story May The 12th Be With You. Because May 12th – today – is the International Awareness Day for ME/CFS. And every GP who is better educated, or Centrelink employee who understands that this is a true disease, or senator like Scott Ludlam agitating for better funding, the better the outcome for hundreds of thousands of Australians. You can make this happen by listening to this story and then talking to everyone you meet about it. You’re our only hope. And to my fellow ME spoonies, my CFS warriors, my pillow fighters. This is our day. May the 12th be with you. [Serial-style piano cover of ‘Sleepless’ by Anna O.]



White feminism’s problem with ‘positive thinking’


This essay was first published in 2018 as ‘You can’t “positive-think” your way out of disadvantage’ in Hot Chicks With Big Brains: Issue #6. It was published under my previous name Kaitlyn Plyley and edited by Bri Lee.

Black-and-white photograph of five women wearing white Victorian-era dresses, hats and rosettes, walking in a protest march while holding a banner that says “NEW YORK CITY WOMEN HAVE NO VOTE AT ALL”.
Women’s suffrage march. | Photographer: Bettmann (CC BY-NC-SA 4.0).

Having just heard my account of how my ex-boyfriend psychologically tormented me for years, the woman in front of me congratulated herself on having chosen a ‘good’ boyfriend — she’d “just known” when she met him that he would never hurt her. I pointed out that I’d felt that way about my ex, which had made the abuse all the more traumatic, like I couldn’t trust my own intuition. The friend dismissed this and said of my ex, “Anyone could tell he had issues.”

As a disabled woman, I encounter this dismissive attitude from many sources (for example when religious people say I just need to “pray for a cure” or when men tell me I misread sexism into a situation) but what shocked me about the exchange is that this woman identified as a feminist. We’d actually met through feminist activist circles. Her insinuation that I’d somehow invited abuse by not predicting my ex’s behaviour was textbook victim-blaming. How was I getting this from a young secular progressive?

Thought-as-power is the theory that human thoughts have creative power; negative thoughts can attract negative experiences and positive thoughts attract beneficial experiences.. It’s the idea behind everything from vision boards and any Instagram hashtag ending in “–spo” to Pentecostal Christian tithing and psychologists advising patients with depression to “think happy”. “Pos vibes only” has its roots in a mostly-forgotten movement from the end of the nineteenth century: New Thought. In Victorian-era America, word spread of a new ‘science’ that could cure a man’s fractured leg without touching it. The patient merely needed to be taught to believe that his leg was healed. With the invention of electricity and the telephone bringing science fiction into reality, esoteric healing through thought seemed plausible.

Historian Beryl Satter wrote that the New Thought movement “both drew upon and deeply influenced the ideas of woman movement leaders, early progressive reformers, and turn-of-the-century neurologists and physicians”. One of New Thought’s earliest leaders, Mary Baker Eddy, founded Christian Science, which holds that “sickness and sin” are illusions that can be overcome by a spiritual mind. I had assumed positive thinking was an incidental symptom of capitalism — internalised neo-liberalism — something that crept into feminism from entrepreneurial motivational posters. But Satter points out, “[t]he majority of late-nineteenth-century New Thought authors, healers, teachers, patients, and congregants were white middle-class women.” Many followers of New Thought (including suffragettes) felt that they were on the cusp of a new ‘woman’s era’, one which would be marked by the supposed peace and gentility of the ‘feminine’ spirit.

Researching this, I am reminded of scenes from the historic 2017 Women’s Marches — excited white, middle-class women wearing pussy hats and proclaiming “the future is female”. There was a tenor I recognised from years of International Women’s Day breakfast speeches and white feminist manifestos: the vague assertions that once women are in more positions of authority, ‘things’ will ‘change’. White woman politicians and wealthy famous white women take the stage to celebrate the ‘power’ of womanhood, usually erasing transgender, gender non-conforming, and non-binary people. It’s only a very specific type of woman that Victorians believed would elevate humankind: white, middle-class, cisgender women.

In the late nineteenth century, rather than working to liberate all bodies, the progressive struggle was mainly over who was the human ideal: white middle-class men or white middle-class women. People of colour and working-class white people didn’t really get a look-in. With white, middle-class people being the dominant demographic in the UK, USA and Australia, it’s no surprise that this is the version of feminism that has dominated general knowledge. It’s critical we remember the classist and racist history of thought-as-power, to remember that the leaders most fervently proclaiming that structural barriers didn’t exist were the ones experiencing the fewest.

Feminist women who victim-blame are just reassuring themselves that they have control over their lives and can avoid misogyny through their own superior mental acuity.

A New Thought attitude can breed a disdain for people who haven’t manifested awesome destinies. Minister For Foreign Affairs Julie Bishop stated to a Women In Media group in 2014 that she did not acknowledge a ‘glass ceiling’ in her work, and further commented that gender had not played a role in how former Prime Minister Julia Gillard had been treated. “She turned herself into a victim,” Bishop told the room. She turned herself into a victim. By adopting a mindset of victimhood, goes the argument, Gillard had invented sexism where there was only a fair society waiting to receive meritorious women.

It can be useful to envision the sort of world you want to live in, so that you are better equipped to recognise when it is drawing nearer or slipping away. But at its extreme, ‘positive thinking’ requires you to deny the evidence of your senses and the testimony of others. When you encounter someone whose experience doesn’t tally with your vision of a ‘positive’ world, you might deny their reality by attributing their struggles to a ‘failure’ to manifest that positivity for themselves.

Feminist women who victim-blame are just reassuring themselves that they have control over their lives and can avoid misogyny through their own superior mental acuity. This is the only way I can explain how a woman who identifies as feminist and makes feminism central to her work could dismiss my account of psychological abuse by a man with the implication that it was my own fault. No one can be safe within a patriarchal society. Rather than convince each individual to ‘positive-think’ themselves into a more acceptable body — thin, healthy, white, with no history of trauma, conforming to the gender binary — I believe that any progressive movement seeking to make ethical change should rather develop a framework in which all bodies (and their experiences) can be accepted as ‘real’.

A walk through England’s plague village

Posts, Selected Posts

This essay was first published on Medium, 6 July 2020.

A photo of Kaitlyn (tall white woman) standing between a red telephone booth and a red post box, her hand resting on the top of the post box. She's wearing a long brown coat with a fur-trimmed hood, a scarf tucked into her coat, black trousers, tall brown boots, and a grey tweed cap. It's a wet day. In the background you can see the Eyam Tea Rooms sign.
The author in 2008, grinning next to a red English phone box and a red English post box, around the corner from Eyam Tea Rooms. Yes, I’m wearing a tweed cap. | © Kaitlyn Blythe 2008


I’d never heard of Eyam before I visited Derbyshire one late autumn, glorying in the russet, gold and green of the changing trees by the River Derwent. I was driven around by a friend, a Derby local who’d grown up sledding down those hills when they were covered in snow. I was only in northern England for one day so she was trying to show me as much as possible. After we’d seen Chatsworth House (at my insistence — it was Pemberley in 2005’s Pride & Prejudice!), my friend showed me the rest of the local sights.

It turned out Derbyshire’s tourist attractions were a bit less Mr Darcy and a bit more grimdark. As we tootled along tiny leafy lanes in her car, my friend pointed out a seemingly average cliff above us: “That’s Lover’s Leap.” A romantic name. She continued casually that it was notable because in Georgian times people would try to die by jumping off there. Oh. We drove on to our next stop, which I was informed was “lunch at the plague village”.

Eyam is a cute place — I’m sorry to the descendants of tough grizzled lead miners, but it’s so cute — nestled in rolling green hills, rustling trees and pale stone walls. It could literally be the village from Untitled Goose Game. You’d expect to see a groundskeeper in a flat cap chasing a horrible goose who’d stolen his prize tulip. It was jarring, then, to see on the side of the cottages lists of names, families who had died there. The village is pocked with green plaques reminding passers-by of the sacrifices that were made.


During the summer of 1665, a London merchant sent a package of cloth samples to Eyam’s tailor. Within weeks, everyone in the tailor’s household had sickened and died. 1665 was the year of London’s Great Plague, when the Black Death wiped out a fifth of the city’s population. We now call it the bubonic plague, and we know more about what causes it and how it is transmitted. The cloth sample probably had infected fleas from London folded into its layers, carrying the disease. 1600s England did not have the benefit of this knowledge. Eyam’s residents were not sure how, but they knew a deadly contagious affliction had come to their village.

A two-storey stone cottage with white square windows and grassy front yard. A large green plaque with white writing on it says “PLAGUE COTTAGE”.
A plague cottage in Eyam. | © Kaitlyn Blythe 2008

Eyam famously agreed to quarantine themselves to prevent any further spread of the infection. By the time their outbreak was over, almost a third of the village’s population had died. Families were wiped out. After the stonemason passed away, people had to engrave their own headstones. One villager, Elizabeth Hancock, lost her six children and husband within one week. There was no one left to help her bury them. She would have tied rope around their feet, to avoid contact with the infectious bodies, and dragged her family members one by one to a nearby field, digging the graves herself.

Eyam is embedded in myth for its 17th-century sacrifice. Its border stones — set up in a perimeter about half a mile out from the village — are now a tourist attraction. A detail that stayed with me years after my stroll through the village’s history was the holes in the stones, and the vinegar. During the quarantine, Eyam residents had relied on food parcels delivered by people from surrounding villages, who would drop the packages at the border stones. In return, the quarantined would leave coins soaked in vinegar, which they believed to be a disinfectant, in holes bored into the stones. Somehow, amid the stories of horrific death, it was the leaving of the disinfected coins that stuck with me the most — the payment for what should have been charity, and the attempt to protect their benefactors from contamination.

Eyam was in lockdown for fourteen months. For over a year, they had no crops from their farms and no income from mining work. Without outside help, those who survived the plague would have died of starvation. It’s possible that Eyam’s neighbours didn’t have purely selfless motives for leaving parcels of meat and grains; they presumedly did not want starving plague carriers escaping the village in desperate search of food. There is a story of a woman leaving Eyam to travel to the nearby village of Tideswell, and being met with ire once people realised where she was from. The Tideswell residents “pelted her with food and mud, shouting “The Plague! The Plague!””, wrote Eleanor Ross for the BBC. You could take a cynical view that Eyam’s and their neighbours’ actions were purely driven by selfish motives: Eyam feared retribution and their neighbours feared their contagion. If the coins hadn’t appeared at the border stones, maybe the food parcels would have stopped coming. But the vinegar, to me, speaks of Eyam’s higher goal: to protect. To contain the infection. Fearful Tideswell merchants could have sanitised the money themselves once they’d received it, but the boundary stone exchanges tell a more wholesome story: of an understanding that their fates were interconnected and equally important.

Eyam’s quarantine measure was not imposed by a militarised force or guarding presence; it was achieved by a public health leader (Mompesson) allying with respected community leaders to explain the situation and gain social acceptance.

While there were external inducements to stay inside their boundary, Eyam’s quarantine was by all accounts a group choice. BBC’s Eleanor Ross wrote, “Although some villagers tried to leave, it appears that most of Eyam’s townsfolk stoically accepted their plight and made a pact with God to remain.” It was newly arrived rector William Mompesson who identified the necessity for quarantine. However, he could not convince the village on his own, being so new to his post. In an “uneasy alliance” with the very man he’d replaced, his ousted predecessor Thomas Stanley, Mompesson was able to convince the village that they had a duty to prevent spread of the disease, accepting a high death toll for themselves in the process. This didn’t occur as soon as the plague hit Eyam — they had a season of sickness, then a month-long lull in plague-related deaths. It was what we would now call “the second wave” that spurred Mompesson into action, as local Eyam historian Francine Clifford explains:

“It was June [1666] and the deaths started to go up again … It was then William Mompesson realised that it was going to get a heck of a lot worse before it got better. He knew if he didn’t stop people leaving the village in panic, it would spread to the villages and the towns. If it got to Sheffield or Manchester, it would be back to the London proportions.”

Eyam’s quarantine measure was not imposed by a militarised force or guarding presence; it was achieved by a public health leader (Mompesson) allying with respected community leaders to explain the situation and gain social acceptance. The rector did use his privileged position to send his children away before the village locked down, but he also stayed and faced the same fate as the people he’d guided into quarantine. (Mompesson lost his wife to the plague during the lockdown.) The boundary stones were markers that any person with the ability to could have walked past. But the villagers didn’t. They stayed in place, listening to the death groans of their neighbours and knowing they could be next, only walking out to the boundary stones to leave coins soaked in vinegar.


I can’t help but think of that vinegar while I soap down my groceries. I’ve been in self-imposed (at first, then later government-mandated) quarantine in my apartment for about four months. So far, nothing on Eyam’s fourteen-month stint, but it’s anyone’s guess how long these measures will be necessary. I self-isolate out of fear for my health, but also out of fear of unknowingly transmitting COVID-19. I need grocery deliveries to survive, but I regularly ask myself if it’s ethical to sequester in safety while demanding that delivery drivers put themselves at risk. At least we have online payment so there is no need to touch money. I tell myself that, if it came to it, I would soak coins in vinegar (or rather, isopropyl) for those drivers. I wonder if I would have had the strength to stay in Eyam.

While we shelter from this coronavirus (in my case, in Melbourne, where people are already returning to public life despite no halt in infections), it’s tempting to think of this as a brief anomaly in our lives that will soon be crushed by the might of modern medicine. Like the Black Death that plagued Eyam in the 1600s, this will also disappear eventually, right? Well, in researching this essay, I was met with a gruesome surprise: the plague never fucking went away. The disease known historically as the Black Death (more scientifically as a bacillus named Yersinia pestis) is still killing people. It still infects 1,000–3,000 people worldwide every year. In 2017, Madagascar’s Ministry of Health reported 2,348 new cases of the plague to the World Health Organisation. Tests found Yersinia pestis, the same plague that, in the 14th century, wiped out a quarter of the world’s population. The same bacteria that plagued London and Eyam in the 17th century. In fact, as I publish this, a new outbreak is being reported in Inner Mongolia. Most patients survive now, thanks to antibiotics and better sanitation, but people still die of the plague.

When I was a kid in history class, we were taught about the Black Death as a historical anomaly, spread by rats in gross medieval conditions. Then it was updated that we’d blamed the rats a little too hastily — it was actually the fleas riding on the rats. Now, due to newer evidence excavated in the past decade from an old English plague cemetery, scientists believe that the disease had to have been airborne to have spread so rapidly. (Most likely helped along by the fleas and the rats, so they’re not entirely off the hook.) The plague takes three forms: bubonic (the most common form, with the tell-tale buboes), pneumonic (transmitted through airborne particles, and the most infectious), and septicemic (infecting the bloodstream). This information, added to the fact that I’m now living through a new pandemic, has given me greater empathy for terrified, confused medieval villagers. They had no idea what the plague was or how it was spreading. Spirits? Acts of God? Medieval doctors thought the plague was caused by corrupt air, and since the Black Death was at least partially airborne, this is as close as you’re going to get to a modern understanding of contagion for a society that hadn’t heard of germs.

Apparently some medieval Christians would kill cats, thinking this would prevent the Black Death because cats brought the Devil in with them. Their reasoning was superstitious, but we know now that animals can transmit the plague, so breathing in airborne droplets from a cat’s breath could indeed have infected people in the Middle Ages. They actually weren’t that far off, it turns out. In current-day United States, Yersinia pestis is common among mice, squirrels and other wildlife. Colorado residents are often warned about plague outbreaks in local prairie dog colonies. In May 2019, a couple died of the bubonic plague after eating infected marmot meat from the Denver area. The plague wasn’t even brought to North America until 1900, on rat-infested steamships — the same year it hit the shores of Sydney, Australia, via shipping trade, leading to the municipal response of killing an estimated 44,000 rats. Australia then saw 12 outbreaks of the plague over the next 25 years. So, rats do actually have a lot to answer for.

Whatever its precise cause of transmission, the Black Death has been infecting humanity (and other species) for thousands of years. For several centuries it resurfaced as an epidemic every few generations. It never died out — just diminished and became a part of human life. We developed antibiotics and better hygiene practices, minimising the disease’s harm. But the plague still survives and spreads, taking two new continents as recently as a century ago. And there I was walking through the village of Eyam in 2008, comfortably thinking the Black Death was from a very different and faraway time.

Viral epidemics are not left behind in our past (as we now know too well), nor are the self-sacrifices of villages locking down to prevent further spread. Reflecting on Eyam’s history in the context of the COVID-19 virus, The Telegraph (UK) writer Joe Shute remembered the bravery of West African villagers in the face of the Ebola virus:

“In late 2014, I visited Liberia during the height of the worst Ebola outbreak in history which ravaged West Africa, claiming more than 11,000 lives. As well as the capital, Monrovia — placed on lockdown like cities in China — I visited villages where whole families had quarantined themselves in their homes to protect the wider community, and one by one were gradually succumbing.”

Eyam’s official website says of its history, “The action of the villagers in staying in the village is almost unique and makes the village the place of significance that it is.” In 1665 England, the Eyam residents’ foresight and courage was remarkable, and arguably what prevented the country’s northern regions from seeing the same devastating scenes happening in London at the time. At the height of Ebola, West African communities saw the same incredible bravery, only six years ago.

On 15 March 2020, three days into the current coronavirus pandemic, The Guardian wrote, “Eyam’s story remains a powerful example not only of how diseases are transmitted — then as now via trade routes and centres — but also of how successful social immobilisation can contain outbreaks.” Social immobilisation remains one of the few tools humanity has against viral epidemics. Quarantine may have been what finally slowed down the Black Death in Europe. Stopping a pandemic is a community effort — if one person had broken Eyam’s pact and transmitted the plague outside the village bounds, the Black Death could have claimed thousands more lives. They were protecting the north, like fantastical watchmen on a giant ice wall. Except the story of their heroism contains no dragons or aristocracy, only exhausted villagers watching their loved ones sicken and die around them.

When I visited Eyam, I was twenty-two years old. I had three worst fears: that the severe neurological illness I experienced in my teens would return; that there would be some kind of global apocalypse; and that I would lose my family. I am now thirty-four. The neurological disease I’d feared returned a few months after I walked through Eyam; perhaps it was already growing in my body while I shivered at stories of historic sickness and death. I’ve been disabled and chronically ill since. And, while perhaps not quite final enough to be apocalyptic, the Global Financial Crisis hit weeks after I learned about those vinegar-soaked coins. Main streets shuttered while stock markets crashed. Autumn of 2008 turned out to be maybe the last time I was even a little bit carefree. As for family — a little over a year ago, I watched my father die a painful, drawn-out death after years of surgeries, radiation and chemo. The rest of my family: estranged. So, not to be too dramatic, but it sort of seems like my worst fears came true. I’m frankly astonished to still be here. Life since I walked through Eyam has felt regularly world-ending.

This year we are facing loss on a global scale. Most crucially, loss of life — but also loss of health. Loss of family. Loss of prospects. Loss of stability. Loss of safety. It might feel like your world is shrinking to fit inside suffocating walls. In May, the World Health Organisation (WHO)’s emergencies director Dr Mike Ryan said: “[T]his virus may become just another endemic virus in our communities, and this virus may never go away … HIV has not gone away — but we have to come to terms with the virus.” In the same video conference, WHO epidemiologist Maria van Kerkhove advised, “We need to get into the mindset that it is going to take some time to come out of this pandemic.” COVID-19 is here now and we have to change to accommodate it. There may never be a vaccine. The Black Death didn’t go away with a vaccine — it actually never went away at all — but it was controlled with changes in lifestyle, rapid diagnosis and administering of antibiotics, and careful monitoring of outbreaks. It doesn’t wipe out a quarter of the world’s population anymore (although I feel like I’m tempting fate by saying that). As I write this, global COVID-19 cases have exceeded 11 million, and the pandemic has killed half a million people (that’s confirmed cases; the numbers could be much higher). The loss is overwhelming. There has never been a coronavirus pandemic before, and there is so much we don’t know about this virus or how it transmits; COVID-19 was only discovered six months ago. I still feel like a 1665 European: bewildered, terrified, not sure whether petting neighbourhood cats is safe or if microwaving my mail is something I should be doing.

Sometimes I’m tempted to cope with this overwhelming situation by imagining my quarantine as noble, like Eyam’s, with myself and my friends as protagonist survivors covered in glory at the end. As if there will be a happy ending to this struggle, as if there could be winners. But a pandemic is only tragedy. Eyam knows this, with its solemn plaques on the sides of houses, remembering heroism by listing the names of the dead. We remember because without them, who knows how many more mass graves could have been buried across England. I wonder, in a year, if their sacrifice will still seem uncommon.

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


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.


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.


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.


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


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.


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.


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, Selected 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.


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


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:


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.