Table of Contents

01

Editorial letter

Angela Iaria and Baya Ou Yang

Letter

02

Roundtable: Communication

Dominique Acciarito, Kaitlyn Blythe, Khadija Gbla, Helene Hill, Iman Rahman

Section Opener

03

Windows of pain

Artie Carden, Kenzie & Rosa (Sick Sad Girlz), Fi Macrae (Private Parts Community), Iman Rahman

Interactive Article

04

There are better ways to explain pain

Rally Team

Explainer

05

We can hold two (competing) truths at once

Julia Bak

PERSONAL NARRATIVE

06

Me vs me

Lou Wall

Video

07

Representation matters (unless it sucks)

Alex Creece

Listicle

08

Music for insomnia

Michael Sun

Playlist

09

Roundtable: Systems

Sophie Aylmore, Kaitlyn Blythe, Tori Hobbs

Section Opener

10

Types of medical bias

Rally Team

Explainer

11

Me vs me

Ashley Apap

Video

12

The weight of the medical system

Renay Barker-Mulholland

Personal Narrative

13

Catharsis

Tori Hobbs

Playlist

14

Moments of impact

Angela Iaria

Personal Narrative

15

Roundtable: Solutions

Sophie Aylmore, Kaitlyn Blythe, Tori Hobbs

Section Opener

16

Alternative ways of living

Sejal Bhikha and Thomas Feng with Emilia Schnall and Nory Gretz

Photo Essay / Interview

17

Rethinking sick leave

Stephanie Riordan with Leon Harper, Amity Mara, Kate Marshall and Róisín McGee

Podcast

18

Read, watch, listen

Rally Team

Interactive Article

19

Act: Support the Disability Justice Network

Rally Team in collaboration with the Disability Justice Network

Interactive Article

01

Editorial letter

Angela Iaria and Baya Ou Yang

LETTER

02

Roundtable: Communication

Dominique Acciarito, Kaitlyn Blythe, Khadija Gbla, Helene Hill, Iman Rahman

Section Opener

03

Windows of pain

Artie Carden, Kenzie & Rosa (Sick Sad Girlz), Fi Macrae (Private Parts Community), Iman Rahman

Interactive Article

04

There are better ways to explain pain

Rally Team

Explainer

05

We can hold two (competing) truths at once

Julia Bak

PERSONAL NARRATIVE

06

Me vs me

Lou Wall

Video

07

Representation matters (unless it sucks)

Alex Creece

Listicle

08

Music for insomnia

Michael Sun

Playlist

09

Roundtable: Systems

Sophie Aylmore, Kaitlyn Blythe, Tori Hobbs

Section Opener

10

Types of medical bias

Rally Team

Explainer

11

Me vs me

Ashley Apap

Video

12

The weight of the medical system

Renay Barker-Mulholland

Personal Narrative

13

Catharsis

Tori Hobbs

Playlist

14

Moments of impact

Angela Iaria

Personal Narrative

15

Roundtable: Solutions

Sophie Aylmore, Kaitlyn Blythe, Tori Hobbs

Section Opener

16

Alternative ways of living

Sejal Bhikha and Thomas Feng with Emilia Schnall and Nory Gretz

Photo Essay / Interview

17

Rethinking sick leave

Stephanie Riordan with Leon Harper, Amity Mara, Kate Marshall and Róisín McGee

Podcast

18

Read, watch, listen

Rally Team

Interactive Article

19

Act: Support the Disability Justice Network

Rally Team in collaboration with the Disability Justice Network

Interactive Article

1/21
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Rally Magazine acknowledges the Wurundjeri people of the Kulin Nation as the Traditional Owners of the land and waterways on which we work and live. We pay our respects to Elders past and present, and to the traditional custodians of all the lands from which our stories and artworks were created.

We recognise Aboriginal and Torres Strait Islanders as the land’s first storytellers and the custodians of the world’s oldest continuous living culture.  

Rally Magazine uses the Social Model of Disability when referring to the term ‘disability’.

As defined by People with Disability Australia, "The social model seeks to change society in order to accommodate people with impairment. It does not seek to change persons with impairment to accommodate society."

You can learn more about this model here.

Editorial letter

Welcome to the inaugural issue of Rally Magazine: a multimedia mag on a mission.

Rally was born out of a desire to take action against political apathy. Our team – filled with washed-up student mag editors and designers – knew we wanted to use our storytelling skills to fight back. But the question became: how can we compete in an already oversaturated media landscape? ...

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More

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Article

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More

Meet the team

A headshot of Baya

Baya Ou Yang

A headshot of Angela

Ange Iaria

A headshot of Sejal

Sejal Bhikha

A headshot of Stephanie

Steph Riordan

A headshot of Lynley

Lynley Eavis

A headshot of Baya

Baya Ou Yang

A headshot of Angela

Ange Iaria

A headshot of Sejal

Sejal Bhikha

A headshot of Stephanie

Steph Riordan

A headshot of Lynley

Lynley Eavis

A headshot of Baya

Baya Ou Yang

A headshot of Angela

Ange Iaria

A headshot of Sejal

Sejal Bhikha

A headshot of Lynley

Lynley Eavis

A headshot of Stephanie

Steph Riordan

Meet the Advisory Board

A headshot of Amity

Amity Mara

A headshot of Renay

Renay Barker-Mulholland

A headshot of Josie

Josie Young

A headshot of Kylie

Kylie Maslen

A headshot of Amity

Amity Mara

A headshot of Josie

Josie Young

A headshot of Kylie

Kylie Maslen

A headshot of Renay

Renay Barker-Mulholland

A headshot of Amity

Amity Mara

A headshot of Josie

Josie Young

A headshot of Kylie

Kylie Maslen

A headshot of Renay

Renay Barker-Mulholland

Part 1.

Communication

How do we communicate something others can't see?

With Dominique Acciarito, Kaitlyn Blythe, Khadija Gbla, Helene Hill and Iman Rahman

Tap
Windows of Pain

Illustrations by Katie Zhou

Pain worlds, as coined by Dr Elena Gonzalez-Polledo and described in Kylie Maslen’s book Show Me Where It Hurts, are "corners of social media where those of us suffering from invisible illnesses are able to express ourselves through means more creative than a number."
We take you inside the pain worlds of 4 different content creators.
Tap
A window illustration with the Sick Sad Girlz sitting in bed behind the window, and the words 'Sick Sad Girlz' labelled beneath
A window illustration with Artie sitting in bed behind the window, and the words Artie Carden' labelled beneath

Illustrations by Katie Zhou

Pain worlds, as coined by Dr Elena Gonzalez-Polledo and described in Kylie Maslen’s book Show Me Where It Hurts, are "corners of social media where those of us suffering from invisible illnesses are able to express ourselves through means more creative than a number. Selfies, status updates and memes... help to make the pain feel observable, and its chronic nature and symptoms tangible."

We take you inside the pain worlds of 4 different content creators.
Windows of Pain
A window illustration with Fi sitting in bed behind the window, and the words 'Fi Macrae' labelled beneath
A window illustration with Iman sitting in bed behind the window, and the words 'Iman Rahman' labelled beneath

There

are

better

ways to

explain

pain

(And the internet is making it possible)

THERE ARE

BETTER WAYS

TO EXPLAIN PAIN

(And the internet is making it possible)

Enter
Article

We can hold two
(competing) truths at once

Much of chronic pain is about accepting and honouring contradictory truths. Using words, numbers and labels to explain pain is a crucial part to survival, but they also serve to flatten our experiences. So instead, we learn to straddle these grey areas like a pillow between the thighs.

Much of chronic pain is about accepting and honouring contradictory truths. Using words, numbers and labels to explain pain is a crucial part to survival, but they also serve to flatten our experiences. So instead, we learn to straddle these grey areas like a pillow between the thighs.

Read more
10 minute read

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Lou
Wall

The everyday quirks of living with invisible illness as told by our funniest creators.

Lou Wall

The everyday quirks of living with invisible illness as told by our funniest creators.

Representation matters:
(unless it sucks)

Representation matters! But it counts for crumbs when the portrayals we see are not accurate, sensitive or helpful. What are the harms of misrepresentation in media for people with disability and chronic illness?

Read More

Representation matters! But it counts for crumbs when the portrayals we see are not accurate, sensitive or helpful. What are the harms of misrepresentation in media for people with disability and chronic illness?

Read More

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Article

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A headshot of Michael

A playlist from

Michael
Sun

Did you know that mediaeval humans used to sleep in two phases? One in the evening, one in the early morning. I know this because I used to Google it all the time when I couldn’t sleep in the middle of the night. I have no idea why I did this; call it delirium. It offered no comfort — I would convince myself the story was merely apocryphal. And, more importantly, we are no longer living in mediaeval times. Disordered sleeping fell out of fashion long ago. 

There is no romance to insomnia, despite what Sleepless in Seattle may suggest. Above all, insomnia is not chic; being tired isn’t a personality. Because I am melodramatic, staying up into the dark makes me want to literally die. Nothing to do but push through the roiling hours. 8, 12, then 24 hours awake: a feat of endurance with no medal at the finish line. May this playlist be your reward. 

A playlist to listen to when you are going through it, curated by some people who have been through it too.

A playlist to listen to when you are going through it, curated by some people who have been through it too.

A playlist to listen to when you are going through it, curated by some people who have been through it too.

I've got a playlist for that

Something to listen to when you are going through it, curated by people who have been through it too.

Playlist by Michael Sun

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more

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Article

Part 2.

Systems

How do we communicate something others can't see?

With Sophie Aylmore, Kaitlyn Blythe and Tori Hobbs

Types of medical biases

A guide for understanding how medical biases effect our healthcare

Read more here

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Article

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Ashley
Apap

The everyday quirks of living with invisible illness as told by our funniest creators.

Ashley Apap

The everyday quirks of living with invisible illness as told by our funniest creators.
A photo of Renay sitting on a stool in front of a white sheet, hung up on a hills hoist. There are words written on the sheet that read: "I'd not even noticed the layers of my intersectional quilt lighten. At that moment, I was just another Blak disabled woman doomed to carry the weight of that forever.
Three people. Three stories. Three generations of trauma trying to survive within the Australian medical system.

The Weight of the Medical System

The Weight of the Medical System

The Weight of the Medical System

The Weight of the Medical System

The Weight of the Medical System

The Weight of the Medical System

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more

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Article

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A headshot of Tori

A playlist from

Tori Hobbs

The disabled experience is wide and varied. No two are the same, but we still build worlds and communities around our collective experiences. We recognise our strengths, our unique perspectives, our joy. How we push on despite everything and hold each other, near and far, through it all. When it feels like the rest of the world has left us behind. 

This playlist is for all those times you feel isolated, for when you’re invited to your friend's DJ gig but the venue’s inaccessible, for when you shit your pants because all the bathrooms at the train station are closed, for when you’re in the car after a life- changing specialist appointment, for when you’re in line at the chemist transferring money out of your savings account to pay for your medication because it isn’t subsidised by the Pharmaceutical Benefits Scheme (PBS), for when you’ve exhausted all your sick leave at work. For all those moments when you desperately need to dance, or cry it out, or both. 

A playlist to listen to when you are going through it, curated by some people who have been through it too.

A playlist to listen to when you are going through it, curated by some people who have been through it too.

I've got a playlist for that

Something to listen to when you are going through it, curated by people who have been through it too.

Playlist by Tori Hobbs

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more

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Article

Moments of impact

The journey to understanding, accepting and making space for our own disabilities is long and ongoing. Relief comes from a world that can learn to slow down, listen to and make space for us too.

Content Warning: Car accident, PTSD

LONG READ

The journey to understanding, accepting and making space for our own disabilities is long and ongoing. Relief comes from a world that can learn to slow down, listen to and make space for us too.

Content Warning: Car accident, PTSD

Content Warning: Car accident, PTSD

Enter
Article

Moments of impact

The journey to understanding, accepting and making space for our own disabilities is long and ongoing. Relief comes from a world that can learn to slow down, listen to and make space for us too.

Content Warning: Car accident, PTSD

Content Warning: Car accident, PTSD

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Part 3.

Solutions

How do we communicate something others can't see?

With Sophie Aylmore, Kaitlyn Blythe and Tori Hobbs

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more

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Alternative ways of living

Emilia and Nory have looked to technology, community and creativity in building for themselves alternative ways of living. We were honoured to be invited in their spaces to see and hear it for ourselves. 

10 minute read

Emilia and Nory have looked to technology, community and creativity in building for themselves alternative ways of living. We were honoured to be invited in their spaces to see and hear it for ourselves. 

10 minute read

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A cover image with headshots of each guest, and the words 'rethinking sick leave' above them

Podcast: Rethinking sick leave

Trying to manage a full-time job while confining the flare-ups of your chronic illness or disability into just ten days of sick leave is a pretty impossible task. In this podcast, we ask the question: Are there better ways to support employees beyond the current model of leave?

Transcript available here.

A cover image with headshots of each guest, and the words 'rethinking sick leave' above them

Podcast: Rethinking sick leave

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So what comes next?

By reading this issue of Rally Magazine, we hope you have felt a deepening of your understanding for the lives of others and an expanding of your empathy. Please don’t stop here.

There are many resources that helped inform the creation of this issue which we also encourage you to read, watch and listen to. There are many actions you can take into your everyday life to drive positive change for the community we are all a part of.

By reading this issue of Rally Magazine, we hope you have felt a deepening of your understanding for the lives of others and an expanding of your empathy. Please don’t stop here.

There are many resources that helped inform the creation of this issue which we also encourage you to read, watch and listen to. There are many actions you can take into your everyday life to drive positive change for the community we are all a part of.

Enter
Article

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more

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Take action

Support the Disability Justice Network

Our mission is to guide our audience towards meaningful action at the end of each issue, working with our Advisory Board to spotlight a group or organisation doing important work for the community we are all a part of.

We invite you to read this section and hear from the Disability Justice Network (DJN). Please take the time to read, learn and rally behind them with us.

Our mission is to guide our audience towards meaningful action at the end of each issue, working with our Advisory Board to spotlight a group or organisation doing important work for the community we are all a part of.

We invite you to read this section and hear from the Disability Justice Network (DJN). Please take the time to read, learn and rally behind them with us.

Support the Disability Justice Network

Our mission is to guide our audience towards meaningful action at the end of each issue, working with our Advisory Board to spotlight a group or organisation doing important work for the community we are all a part of.

We invite you to read this section and hear from the Disability Justice Network (DJN). Please take the time to read, learn and rally behind them with us.

Our mission is to guide our audience towards meaningful action at the end of each issue, working with our Advisory Board to spotlight a group or organisation doing important work for the community we are all a part of.

We invite you to read this section and hear from the Disability Justice Network (DJN). Please take the time to read, learn and rally behind them with us.

Enter
Article

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more

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Article

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more

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Article

Meet the contributors

We couldn’t have put this first issue together without the leap of faith our team, advisory board and contributors took with us – thank you.

Additionally, a huge thank you to Lauren Frost, Lucie Greene, Domenic Iaria, Erin Lyon, Connor O'Brien, Rena Ou Yang and Ella Shi for giving us their expertise and advice.

Contributors

Meet the contributors

We couldn’t have put this first issue together without the leap of faith our team, advisory board and contributors took with us – thank you. Additionally, a huge thank you to Lauren Frost, Lucie Greene, Domenic Iaria, Erin Lyon, Connor O'Brien, Rena Ou Yang and Ella Shi for giving us their expertise and advice.

Alex Creece

Writer

@roguedyke

Amity Mara

Podcast Interviewee

-

Artie Carden

Content Creator

@artiecarden

Ashley Apap

Video Creator

@ashleycrapap

Dominique Acciarito

Video Interviewee

@thespooniesocietyAU

Em Jensen

Photographer

@emjensencreative

Emilia Schnall

Photo Essay Interviewee

@missemiliamusic

Fi Macrae

Content Creator

@privatepartscommunity

Grace Taylor

Illustrator

@gracetaylorillustration

Helene Hill

Video Interviewee

@thespooniesocietyAU

Iman Rahman

Content Creator & Video Interviewee

@alilbitofaith

Julia Bak

Writer

@mugworts

Kaitlyn Blythe

Video Interviewee

@blythebyname

Kate Marshall

Podcast Interviewee

@hacsu

Katie Zhou

Illustrator

@katiezhoudesign

Kenzie TTH

Content Creator

@sicksadgirlz

Khadija Gbla

Video Interviewee

@khadija_gbla

Leon Harper

Podcast Interviewee

@youngworkersvic

Lou Wall

Video Creator

@thelouwall

Michael Sun

Playlist Creator

@michael.pdf

Nory Gretz

Photo Essay Interviewee

@norygretz

Renay Barker-Mulholland

Writer

@firstnations_feminist

Róisín McGee

Podcast Interviewee

@roisin.mcgee

Rosa Mercuriadis

Content Creator

@sicksadgirlz

Sophie Aylmore

Video Interviewee

@sophie_aylmore

Thomas Feng

Photographer

@thomasfengg

Tori Hobbs

Video Interviewee & Playlist Creator

@jackiebyjoanne

Alex Creece

Writer

@roguedyke

Amity Mara

Podcast Interviewee

-

-

Artie Carden

Content Creator

@artiecarden

Ashley Apap

Video Creator

@ashleycrapap

-

Dominique Acciarito

Video Interviewee

@thespooniesocietyau

Em Jensen

Photographer

@emjensencreative

Emilia Schnall

Photo Essay Interviewee

@missemiliamusic

Fi Macrae

Content Creator

@privatepartscommunity

Grace Taylor

Illustrator

@gracetaylorillustration

-

Helene Hill

Video Interviewee

@thespooniesocietyau

Iman Rahman

Content Creator& Video Interviewee

@alilbitofaith

Julia Bak

Writer

@mugworts

Kaitlyn Blythe

Video Interviewee

@blythebyname

-

Kate Marshall

Podcast Interviewee

@katemarshall82

Katie Zhou

Illustrator

@katiezhoudesign

Kenzie TTH

Content Creator

@sicksadgirlz

Khadija Gbla

Video Interviewee

@khadija_gbla

Leon Harper

Podcast Interviewee

@leon.ash.harper

-

Lou Wall

Video Creator

@thelouwall

Michael Sun

Playlist Creator

@michael.pdf

-

Nory Gretz

Photo Essay Interviewee

@norygretz

Renay Barker-Mulholland

Writer

@firstnations_feminist

Róisín McGee

Podcast Interviewee

@roisin.mcgee

Rosa Mercuriadis

Content Creator

@sicksadgirlz

Sophie Aylmore

Video Interviewee

@sophie_aylmore

Thomas Feng

Photographer

@thomasfengg

Tori Hobbs

Video Interviewee & Playlist Creator

@jackiebyjoanne

Keep in touch

Thank you for reading this issue of Rally Magazine.

Editorial letter

Welcome to the inaugural issue of Rally Magazine: a multimedia mag on a mission. 

Rally was born out of a desire to take action against political apathy. Our team – filled with washed-up student mag editors and designers – knew we wanted to use our storytelling skills to fight back. But the question became: how can we compete in an already oversaturated media landscape? As soon as a story breaks, our feeds are flooded with hot-take tweets, clickbait titles and news articles that provide little-to-no context. And as quickly as the content machine demands we pay attention to this subject, so does it demand we move onto the next.    

It was inside this exhaustion that a small idea was born. What if we created a magazine that refused to go fast? What if, instead, we intentionally sit with one story and dedicate our full attention to carefully teasing out the words, images, sounds and shapes that could best tell each part? And what if we extended this same pace to our audience?

This issue is not designed to be consumed hungrily in one sitting (although, don’t let us stop you). Maybe today you only have the time and energy to take a bite of our smaller pieces, such as Windows of pain and Me vs me, to ease yourself into the topic or have a little laugh. Perhaps you want to revisit us during your hot girl walk this weekend by listening to Rethinking sick leave or I’ve got a playlist for that. Maybe in a month, you’ll finally get a long luxurious hour to sit on your favourite part of the couch and devour all three stories inside The weight of the medical system.    

However you choose to approach this issue, we invite you to go slow. Slowness can often feel like the antithesis to action, but if we have learned anything from working on an edition about illness and disability, it’s that this world is demanding from us a pace we can’t sustain. 
This issue took one and a half years to make – balanced by a team working full time (everyone), navigating their own invisible illnesses (Angela and Lynley), and literally growing and birthing a whole human (Stephanie). And throughout it all, we tip-toed across many iterations of the Is this taking too long? anxiety. 

If even the healthiest among us are feeling the immense pressure to move faster and work harder, how can we support the one in five people in so-called Australia who have a disability, of which 90 percent are invisible? This issue asks you to see the invisible – to not just see the ways a person’s disability may not present physically, but also see the intangible constructs of our society that block people with disability from having more independence, choice and control.
 
We recognise the label of disability may not be used by everyone who resonates with the content in Rally. There are also barriers placed in front of people with visible disabilities that are unexplored in this issue, but still worthy of dismantling. The experience of illness and disability is vast, varied and unable to be captured in its entirety by a single edition of a magazine. We hope Rally is a launching point, no matter where you are starting – and our Read, Watch, Listen, Act section has some great recommendations for where to go next.

Disability is a part of the human condition. And at the core of all its nuance, in every conversation we had with our chronically ill team members, Advisory Board and contributors, is a burning request: how can you make space for us?

These invisible barriers need to be dismantled so we can thrive and fully participate in society, and the first barrier you can help us tear down is the one that prevents you from seeing us. We urge you to expand your empathy to colleagues who have used up all their sick leave, to friends who always seem to bail for reasons you can’t understand, and to strangers on the train who request a seat when you can’t see why. Because once you start seeing, these things won’t be so invisible anymore. 
The signatures of Angela and Baya

There

are

better

ways to

explain

pain

(And the internet is making it possible)

THERE ARE

BETTER WAYS

TO EXPLAIN PAIN

(And the internet is making it possible)

If you’ve ever seen a health professional when you’ve been in pain, you’ve probably been asked the following question: “On a scale from one to ten, how much does it hurt?”.

And if you’ve ever experienced chronic pain, you’ve probably felt how deeply reductive this question is to answer.  

Pain scales, charts and other quantitative measures of pain ignore the fact that pain is complex, subjective and ever-changing. They often fail to capture that there are different types of pain – from muscle pain to nerve and joint pain – and they also pursue a standardisation of pain that is unattainable. How can we know if a six for you is the same as a six for me?

Finally, they simplify pain to one dimension: its physical intensity. But as Professor Stephen McMahon from the London Pain Consortium says, “Pain is not unidimensional… it comes with other baggage: how threatening it is, how emotionally disturbing, how it affects your ability to concentrate.”

Scales and charts are not only ineffective in measuring the severity of pain’s physical feeling, they also fail to capture all the ways pain can
impact our quality of life.

So what happens when the tools of expression we are given fail us? We invent new ones, of course. As people with chronic pain feel limited by quantitative measures of pain, microblogging platforms and its creative tools have emerged as powerful alternatives.

Pain scales

An illustration of a scale from 1 to 10

vs

Memes

A meme of an oil painting where one person is patting another person on the shoulder. The first person is saying "I'm chronically ill" and the second person says "Get well son" and the first person says "Thanks, I won't".
A meme that reads "On a scale of one to ten, rate your pain". Beneath is a black and white photo of an alarmed bird, with text surrounding it that reads: "What does each number mean? Right now? Which pain? Which type of pain? Today or in general? When I came in or after sitting 2 hours?"
A meme of two Cards Against Humanity cards. The black card reads "This is the prime of my life. I'm young, hot and full of" followed by a blank line.

The white card reads "Moderate-to-severe joint pain"
A meme of Princess Mia from the Princess Diaries movie holding a burning name card. There is text placed on top of the burning name card that says 'How I feel on the inside'. There is text placed on top of Mia, who looks alarmed, that says 'How I look on the outside'
An arrow pointing left, indicating 'previous'
An arrow pointing right, indicating 'next'

Visual scales

An illustration of a pain scale with the numbers 1-10 assigned to various faces. The faces start with a smiling expression at 1, progressing in distress until the most distressed expression at 10.

vs

Tiles

A text designed tile that reads "Imagine having to carefully plan every trip outside the house. You make sure it isn't too long that it makes you sick, but long enough that it's still worth it. You work out timings to make sure you leave at your most 'energised'. You save up meds to take to help get you through. You put in rest periods before and after to recover. All so you can go out and be a part of the 'normal' world just for a little bit. ~ leaving the house with chronic illness
A pie chart titled 'Morning thoughts of chronic pain sufferers'. The chart is divided into 89% orange and 2% red.
The orange section is labelled 'fuck' and the red section is labelled 'also fuck'.
A quote tile that reads: I am constantly in pain. Yes, constantly. Every single second. The pain is still there when I'm smiling. The pain is still there when I don't talk about it. When I say "I'm fine" I have a different definition than you do.
A piece chart titled 'My symptoms in a pie chart'. Blue takes up 50% of the pie chart and reads "the fuck is this?". Purple takes up 50% of the pie chart and reads "the fuck is that?"
An arrow pointing left, indicating 'previous'
An arrow pointing right, indicating 'next'

Pain Charts

A medical diagram of a male body, shown in four angles – right side, back, front and left side

vs

Threads

A tweet by @chronicillspod that reads "Slut Era, I whisper as I take my morning meds and move from my bed to join my cat on the couch."
A tweet by @mamila_jain that reads "If you've ever used an electric mixer instead of whisking by hand, you should understand mobility aids".
A tweet by @_daytonw that reads "my favourite childhood memory is my back not hurting"
A tweet by @DiaryofaSickGirl that reads: *Doesn't go to thing because of chronic illness/disability*

People: wow I can't believe they didn't come to thing, how rude.

*Prepares mentally and physically all week to go to thing. Goes to thing and has a pretty good time but has a flare after*

People: See, they're fine!
An arrow pointing left, indicating 'previous'
An arrow pointing right, indicating 'next'

Conclusion


The experience of chronic pain is inherently isolating. So, as with any relatable meme, tile or thread you find online, there is an indescribable comfort in coming across another person who has felt the same specific truth as you. In one bite-sized moment, you don’t feel as alone. The pain, and everything that comes with it, feels more bearable. 

At the same time, sharing a meme onto your socials becomes a shortcut to vulnerability with friends, family and colleagues that have the potential to start conversations and expand empathy IRL. 

But while finding connection through the internet is certainly a solace, it’s far from the solution. The dialogue we are having online means nothing if the people responsible for supplying our management and treatments aren’t there as well.

As Kylie Maslen writes in her book Show Me Where It Hurts, “By turning to microblogging sites and social media, doctors have an opportunity to open themselves up to the realities of living with chronic pain… Closing [these] gaps in language between doctors and patients will help the treatment of chronic illness.”

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Meet the contributors

Alex Creece

Writer

@roguedyke

Amity Mara

Podcast Interviewee

-

Artie Carden

Content Creator

@artiecarden

Ashley Apap

Video Creator

@ashleycrapap

Dominique Acciarito

Video Interviewee

@thespooniesocietyau

Em Jensen

Photographer

@emjensencreative

Emilia Schnall

Photo Essay Interviewee

@missemiliamusic

Fi Macrae

Content Creator

@privatepartscommunity

Grace Taylor

Illustrator

@gracetaylorillustration

Helene Hill

Video Interviewee

@thespooniesocietyau

Iman Rahman

Content Creator& Video Interviewee

@alilbitofaith

Julia Bak

Writer

@mugworts

Kaitlyn Blythe

Video Interviewee

@blythebyname

Kate Marshall

Podcast Interviewee

@katemarshall82

Katie Zhou

Illustrator

@katiezhoudesign

Kenzie TTH

Content Creator

@sicksadgirlz

Khadija Gbla

Video Interviewee

@khadija_gbla

Leon Harper

Podcast Interviewee

@leon.ash.harper

Lou Wall

Video Creator

@thelouwall

Michael Sun

Playlist Creator

@michael.pdf

Nory Gretz

Photo Essay Interviewee

@norygretz

Renay Barker-Mulholland

Writer

@firstnations_feminist

Róisín McGee

Podcast Interviewee

@roisin.mcgee

Rosa Mercuriadis

Content Creator

@sicksadgirlz

Sophie Aylmore

Video Interviewee

@sophie_aylmore

Thomas Feng

Photographer

@thomasfengg

Tori Hobbs

Video Interviewee & Playlist Creator

@jackiebyjoanne

Keep Learning

Read

Tap
Kylie Maslen
Kylie Maslen has been living with invisible illness for 20 years and its impact is felt in every aspect of her day-to-day existence. Show Me Where it Hurts is a powerful collection of essays that speak to those who have encountered the brush-off from doctors, faced endless tests and endured chronic pain and suffering. But it is also a bridge reaching out to all those who want to understand what life looks like when you cannot simply show others where it hurts.
PEOPLE WITH DISABILITY AUSTRALIA (PWDA)
This guide was written by people with disability to assist the public and media outlets in talking about and reporting on disability. The language that people use has an impact – from how people with disability are perceived and treated by society to how they feel about themselves. It’s important to build awareness of the words we use when talking to and about people with disability.
GABRIELLE JACKSON
Fourteen years after being diagnosed with endometriosis, Gabrielle Jackson couldn't believe how little had changed in the treatment and knowledge of the disease. In 2015, her personal story kick-started a worldwide investigation into endometriosis by The Guardian; thousands of women got in touch to tell their own stories and many more read and shared the material. Pain and Prejudice is a vital testament to how social taboos and medical ignorance keep women sick and in anguish.
CARLY FINDLAY
One in five Australians have a disability. And disability presents itself in many ways. Yet disabled people are still underrepresented in the media and in literature. In this book – compiled by writer and appearance activist Carly Findlay – more than 40 writers with a disability or chronic illness share their stories, in their own words. The result is illuminating.
HUE. COLOUR THE CONVERSATION
For people who experience oppression, the safety of our workplaces can be a key factor in our mental health and wellbeing. But creating safer workplaces can be challenging. The Inclusive Workplace Toolkit aims to make working towards a safer workplace more accessible, and to provide a starting point for addressing where these types of discrimination might be showing up in your organisation, both structurally and interpersonally.

Watch

Stella young
Stella Young breaks down society's habit of turning people with disability into "inspiration porn". In this talk, she challenges us to recognise the lie we’ve been sold about disability, that it makes you a hero for just ‘enduring’ it, and instead directs us to see the people behind the disability – messy and flawed just like anyone. Young was a comedian, writer and disability advocate who is remembered for her wit, intellect, activism, her love of dancing and her always fabulous hair.
JAMEISHA PRESCOD
The online series You Look Okay To Me shines a light on the presumptions Jameisha Prescod seeks to challenge. “You look okay to me” is a phrase Jameisha repeatedly heard when telling people about her autoimmune disease. In her work, she creates video essays that debunk myths around what it means to have a chronic illness, and how this is influenced by culture and identity. Her intersectional approach – paired with her melodic intonation – makes for an accessible, entertaining and nuanced collection of resources.
ALLYSSA ABLON
Allyssa is a chronically ill and autistic creator on TikTok. In her videos, she often speaks to her day-to-day experiences while also educating viewers on structures and systems that create barriers for people with chronic illness/disability. Creating in so-called Australia, she also provides localised advice for navigating the Disability Support Pension (DSP), National Disability Insurance Scheme (NDIS) and other centralised systems in this country. Whether you’re looking for a laugh or to learn, you can find it on Allyssa’s page.
netflix
Heartbreak High follows a group of Australian teens as they navigate love, sex and heartbreak. Featured among them is autistic character Quinni, played by Chloè Hayden – an actor who was diagnosed with autism and attention-deficit/hyperactivity disorder (ADHD). The show has been celebrated for its authentic portrayal of the complexities of being a young person with autism. By virtue of being shown as a multifaceted human, Quinni challenges assumptions both implicitly and explicitly on what it means to be autistic.
artie carden
Artie is a 29-year-old nonbinary creator (they/them) on YouTube who makes videos on a range of topics about their life, pop culture and politics. Some episodes look at disability and chronic illness in the media while others take the form of a storytime, chatting through their first solo travel experience as a disabled person. Watching their channel feels like you are reading a letter from your pen pal. It’s vulnerable, personal and genuine.

Listen

ANGELICA AND ALINA
The Chronic-Ills is hosted by two pals who decided to create a space to discuss and rant about all the trials and tribulations of having chronic illness as a 20-something-year-old. Join them through the podcast or on Instagram as they ponder some of the experiences and very real challenges of trying to navigate life as a young person who is also juggling an incurable condition.
CHLOE SARGEANT AND JOANNA NILSON
This is a podcast about chronic illness. Two chronically fully sick gals discuss all the wondrous joys and justifiable woes of living life with unrelenting pain and fatigue, along with all sorts of generally silly and straight-up rude garbage. There is understandably quite a lot of swearing. You can also checkout their Instagram page for more laughs, and their Facebook group to find community.
KAITLYN BLYTHE
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Just a Spoonful has been charming listeners for years with wide-ranging interviews about pop culture, the creative industries, relationships, ambition and ableism.
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A podcast for neurodivergent women, hosted by a clinical psychologist and clinical neuropsychologist. The show highlights neurodivergent women from all walks of life and aims to understand their experiences and amplify their voices.Listen to learn more about neurodivergence, from ADHD to autism and everything in between.
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Read

Watch

Listen

Tap

Show Me Where It Hurts

A 'plus' sign to indicate that the document is expandable
Kylie Maslen
Kylie Maslen has been living with invisible illness for 20 years and its impact is felt in every aspect of her day-to-day existence. Show Me Where it Hurts is a powerful collection of essays that speak to those who have encountered the brush-off from doctors, faced endless tests and endured chronic pain and suffering. But it is also a bridge reaching out to all those who want to understand what life looks like when you cannot simply show others where it hurts.

People with Disability Australia Language Guide

A 'plus' sign to indicate that the document is expandable
PEOPLE WITH DISABILITY AUSTRALIA (PWDA)
This guide was written by people with disability to assist the public and media outlets in talking about and reporting on disability. The language that people use has an impact – from how people with disability are perceived and treated by society to how they feel about themselves. It’s important to build awareness of the words we use when talking to and about people with disability.

Pain and Prejudice

A 'plus' sign to indicate that the document is expandable
GABRIELLE JACKSON
Fourteen years after being diagnosed with endometriosis, Gabrielle Jackson couldn't believe how little had changed in the treatment and knowledge of the disease. In 2015, her personal story kick-started a worldwide investigation into endometriosis by The Guardian; thousands of women got in touch to tell their own stories and many more read and shared the material. Pain and Prejudice is a vital testament to how social taboos and medical ignorance keep women sick and in anguish.

Growing Up Disabled In Australia

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EDITED BY CARLY FINDLAY
One in five Australians have a disability. And disability presents itself in many ways. Yet disabled people are still underrepresented in the media and in literature. In this book – compiled by writer and appearance activist Carly Findlay – more than 40 writers with a disability or chronic illness share their stories, in their own words. The result is illuminating.

Inclusive Workplace Toolkit

A 'plus' sign to indicate that the document is expandable
HUE. COLOUR THE CONVERSATION
For people who experience oppression, the safety of our workplaces can be a key factor in our mental health and wellbeing. But creating safer workplaces can be challenging. The Inclusive Workplace Toolkit aims to make working towards a safer workplace more accessible, and to provide a starting point for addressing where these types of discrimination might be showing up in your organisation, both structurally and interpersonally.

Read

Watch

Listen

I’m Not Your Inspiration, Thank You Very Much

A 'plus' sign to indicate that the document is expandable
STELLA YOUNG
Stella Young breaks down society's habit of turning people with disability into "inspiration porn". In this talk, she challenges us to recognise the lie we’ve been sold about disability, that it makes you a hero for just ‘enduring’ it, and instead directs us to see the people behind the disability – messy and flawed just like anyone. Young was a comedian, writer and disability advocate who is remembered for her wit, intellect, activism, her love of dancing and her always fabulous hair.

@Youlookokaytome - An Online Space

A 'plus' sign to indicate that the document is expandable
JAMEISHA PRESCOD
The online series You Look Okay To Me shines a light on the presumptions Jameisha Prescod seeks to challenge. “You look okay to me” is a phrase Jameisha repeatedly heard when telling people about her autoimmune disease. In her work, she creates video essays that debunk myths around what it means to have a chronic illness, and how this is influenced by culture and identity. Her intersectional approach – paired with her melodic intonation – makes for an accessible, entertaining and nuanced collection of resources.

@Allyssaablon01 On TikTok

A 'plus' sign to indicate that the document is expandable
ALLYSSA ABLON
Allyssa is a chronically ill and autistic creator on TikTok. In her videos, she often speaks to her day-to-day experiences while also educating viewers on structures and systems that create barriers for people with chronic illness/disability. Creating in so-called Australia, she also provides localised advice for navigating the Disability Support Pension (DSP), National Disability Insurance Scheme (NDIS) and other centralised systems in this country. Whether you’re looking for a laugh or to learn, you can find it on Allyssa’s page.

Heartbreak High

A 'plus' sign to indicate that the document is expandable
NETFLIX
Heartbreak High follows a group of Australian teens as they navigate love, sex and heartbreak. Featured among them is autistic character Quinni, played by Chloè Hayden – an actor who was diagnosed with autism and attention-deficit/hyperactivity disorder (ADHD). The show has been celebrated for its authentic portrayal of the complexities of being a young person with autism. By virtue of being shown as a multifaceted human, Quinni challenges assumptions both implicitly and explicitly on what it means to be autistic.

@Artiecarden On Youtube

A 'plus' sign to indicate that the document is expandable
ARTIE CARDEN
Artie is a 29-year-old nonbinary creator (they/them) on YouTube who makes videos on a range of topics about their life, pop culture and politics. Some episodes look at disability and chronic illness in the media while others take the form of a storytime, chatting through their first solo travel experience as a disabled person. Watching their channel feels like you are reading a letter from your pen pal. It’s vulnerable, personal and genuine.

Read

Watch

Listen

The Chronic-Ills

A 'plus' sign to indicate that the document is expandable
ANGELICA AND ALINA
The Chronic-Ills is hosted by two pals who decided to create a space to discuss and rant about all the trials and tribulations of having chronic illness as a 20-something-year-old. Join them through the podcast or on Instagram as they ponder some of the experiences and very real challenges of trying to navigate life as a young person who is also juggling an incurable condition.

Chronically Fully Sick

A 'plus' sign to indicate that the document is expandable
CHLOE SARGEANT AND JOANNA NILSON
This is a podcast about chronic illness. Two chronically fully sick gals discuss all the wondrous joys and justifiable woes of living life with unrelenting pain and fatigue, along with all sorts of generally silly and straight-up rude garbage.There is understandably quite a lot of swearing. You can also checkout their Instagram page for more laughs, and their Facebook group to find community.

Just A Spoonful

A 'plus' sign to indicate that the document is expandable
KAITLYN BLYTHE
This warm, funny podcast brings you long-form conversations between young disabled and chronically ill creatives talking about how they’re living and what they live for.Just a Spoonful has been charming listeners for years with wide-ranging interviews about pop culture, the creative industries, relationships, ambition and ableism.

The Neurodivergent Woman Podcast

A 'plus' sign to indicate that the document is expandable
MONIQUE MITCHELSON AND MICHELLE LIVOCK
A podcast for neurodivergentwomen, hosted by a clinicalpsychologist and clinicalneuropsychologist. The showhighlights neurodivergent womenfrom all walks of life and aims tounderstand their experiences and amplify their voices. Listen to learn more aboutneurodivergence, from ADHD toautism and everything in between.

(Un)marginalised: S2, E2 with Renay Barker-Mulholland

A 'plus' sign to indicate that the document is expandable
LIEL K. BRIDGFORD
(Un)marginalised reveals the truth about living on the intersection of diverse identities. It explores the triumphs, resilience, struggles and joys of a multilayered existence by encouraging empathy, equality and love. In this episode, Liel and Renay discuss the complexities of art, parenting, disability, intersections and identity.
A folder tab that reads 'Act' as its headingA folder tab that reads 'Act' as its headingA folder tab that reads 'Act' as its heading
A flowchart where the centre reads 'Who are the DJN?' with 4 connecting shapes, each with a name inside them. A flowchart where the centre reads 'Who are the DJN?' with 4 connecting shapes, each with a name inside them. A flowchart where the centre reads 'Who are the DJN?' with 4 connecting shapes, each with a name inside them. Connecting to each of these shapes are more names inside shapes. A flowchart where the centre reads 'Who are the DJN?' with 4 connecting shapes, each with a name inside them. Connecting to each of these shapes are more names inside shapes.

1.

In a way, we are just 8 very tired but very passionate humans with disability living in so-called Australia.

2.

And each of us know people who know people, who know people.
Tap

Let's take Priya as an example

Priya attends an event

Priya attends a book-signing event. While there, they meet Lottie who got a $96 parking ticket because there were no accessible spots close enough to the venue.
Tap

Meets
Lottie

Priya then finds out

Lottie can only work part time due to their disability, has significant ongoing medical bills to pay and has caretaking responsibilities for their mother who also has a disability. So Lottie doesn’t have $96 to pay this parking ticket, and risks getting another fine if they don’t pay it before a particular date.

Priya can do one of three things:

DJN
Funds

DJN
network

Online
community

Priya can dip into the DJN funds to help pay Lottie’s ticket. It’s a trust-based system so there’s no need for Priya to fill out a form, or add the request to an agenda of a meeting that won’t convene for another three weeks.
Or Priya can post a story on to the DJN Instagram with Lottie’s bank details to see if someone can make a direct transfer.
Or Priya can bring this information to the DJN members. Maybe Omar knows someone who knows someone who works at the council which issued Lottie’s ticket in the first place, and can escalate a request for dispute.

Real change

Tap
A line that looks like a 'crack'

happens slowly

A line that looks like a 'crack'
A line that looks like a 'crack'A line that looks like a 'crack'

and systematically

A line that looks like a 'crack'

by people in power.

A line that looks like a 'crack'
A line that looks like a 'crack'

5.
But what about those who fall through the cracks while waiting?

Let's take Lottie as an example again

The real change that has to happen here, of course, is for the local council to place accessible parking closer to the venue where Lottie got their ticket. Even grander still, it’s for the federal government to pass legislation that ensures accessible parking is available at all public venues no matter the council.

But campaigning for this sort of change is going to take time that Lottie doesn’t have when their fine is due in two days. So for right now, the help Lottie needs is something only the DJN can do.

1.

The DJN is eight very passionate humans with disability. But it’s also all the people we know and all the people they know, each one of us committed to helping one another when the system fails us.
“My neighbour needs someone to pick up their kid in an hour.”
Tap
"Does anyone know of a space we can use to host a disability support group next month?"
“My brother needs help filling out some legal documents – English is not our first language.”
“I need $96 to pay this parking fine!”
A flow chart of various names inside various shapes, all interconnecting to show a connected system of people

2.

The fear is always: “What if people take advantage of the network?” And it’s true, we can’t be sure. But if we want to challenge a system that places the burden of proof on the individual, we have to choose to trust one another.

1. Donate

You can donate to the fund. There’s a button here to give a once-off donation – we don’t care how much you want to give.

2. Follow

You can follow us on Instagram. We post requests there when we can’t find a solution through word of mouth. You can reach out if there’s a request you can assist with, or share it to your network.

3. Act

Most importantly, you can take this philosophy and bring it into your everyday life. Think about what small but significant knowledge, resource and influence you have at your disposal and invest it in your community.
A cover image with headshots of each guest, and the words 'rethinking sick leave' above them

Podcast: Rethinking sick leave

Trying to manage a full-time job while confining the flare-ups of your chronic illness or disability into just ten days of sick leave is a pretty impossible task. In this podcast, we ask the question: Are there better ways to support employees beyond the current model of leave?

Transcript available here.

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A headshot of Tori

A playlist from

Tori
Hobbs

The disabled experience is wide and varied. No two are the same, but we still build worlds and communities around our collective experiences. We recognise our strengths, our unique perspectives, our joy. How we push on despite everything and hold each other, near and far, through it all. When it feels like the rest of the world has left us behind. 

This playlist is for all those times you feel isolated, for when you’re invited to your friend's DJ gig but the venue’s inaccessible, for when you shit your pants because all the bathrooms at the train station are closed, for when you’re in the car after a life- changing specialist appointment, for when you’re in line at the chemist transferring money out of your savings account to pay for your medication because it isn’t subsidised by the Pharmaceutical Benefits Scheme (PBS), for when you’ve exhausted all your sick leave at work. For all those moments when you desperately need to dance, or cry it out, or both. 

A playlist to listen to when you are going through it, curated by some people who have been through it too.

A playlist to listen to when you are going through it, curated by some people who have been through it too.

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A playlist from

Michael
Sun

Did you know that mediaeval humans used to sleep in two phases? One in the evening, one in the early morning. I know this because I used to Google it all the time when I couldn’t sleep in the middle of the night. I have no idea why I did this; call it delirium. It offered no comfort — I would convince myself the story was merely apocryphal. And, more importantly, we are no longer living in mediaeval times. Disordered sleeping fell out of fashion long ago. 

There is no romance to insomnia, despite what Sleepless in Seattle may suggest. Above all, insomnia is not chic; being tired isn’t a personality. Because I am melodramatic, staying up into the dark makes me want to literally die. Nothing to do but push through the roiling hours. 8, 12, then 24 hours awake: a feat of endurance with no medal at the finish line. May this playlist be your reward. 

A playlist to listen to when you are going through it, curated by some people who have been through it too.

A playlist to listen to when you are going through it, curated by some people who have been through it too.

Moments of impact

The journey to understanding, accepting and making space for our own disabilities is long and ongoing. Relief comes from a world that can learn to slow down, listen to and make space for us too.

Content Warning: Car accident, PTSD

LONG READ

One

It was on a warm night in January when it happened. 

I am on summer break one year into my photography degree, enjoying a trip to Wilsons Prom with my high school friends. During the day, we walk along the coast and up hillsides while I take photos on my film camera. At night, we play King’s Cup on the cold concrete of the basketball court, remembering the times we spent together in school – who got together, who split up – and talking about how we never want to grow old.

One evening, we go out for dinner to a restaurant that’s closer to the main part of town. On the way back, we split up into three separate cars and I leave with one of my best friends. I flick through the songs on Demi’s phone and blast the music from the speakers of her car. I kick off my shoes, settling in. We joke about who will get home first as Demi edges her foot a little harder on the pedal. Then we make a wrong turn and head around a bend way too fast.

There are breaks in my memory. What I do recall is the sudden sensation of swerving, of the road and trees blurring into one. For a moment, it’s as if we’re floating, the world is drifting past so fast, so fast, why are we moving so fast? I try to distinguish the shapes ahead of me. There’s a break between the trees and I think we’ll just pass through them and be fine, until there’s a bang as loud and violent as a bomb. The airbags deploy, the windscreen shatters, I jolt forward and then crack

In that moment of impact, the car bounces off the tree and swerves 180 degrees so that we are turned to face the road. Demi looks at me. For a moment, we just stare at each other before she says – "It’s fine. We’re okay."

But I know I’m not okay. I try to breathe and the air comes out in ragged breaths. It’s as though something heavy is weighing down my lungs, and this weight prevents them from working properly. I’m so focused on my breath that I’m not even aware I’m using my arms to hold up the weight of my back and legs.

I shake my head. "I can’t breathe," I tell her, "Demi I can’t breathe."

In my mind I know I’m going to die.

TWO

I don’t sleep. In the early hours of the next morning – after numerous x-rays and MRIs, monitoring my lungs to make sure they don’t collapse and moving me from the regional hospital to the metro one –  the neurosurgeon comes to see me. Dr Addams* is a middle aged man with dark hair and a poker face. When he speaks, his voice is soft and he addresses me by using my name, however his gaze never quite reaches mine.

“You have an unstable fracture on your L3 vertebrae”, he says, looking at my scans instead of me. “You will need to be operated on and the procedure will involve a spinal fusion.” 

The operation carries the risk of certain complications: infection, nerve damage, bladder problems, blood clots – he keeps talking to my parents but I have stopped listening.  “You’re lucky,” he says, “with a spinal fusion so young, in six to eight weeks you’ll be just as you were before.”

Three

At home, my parents have converted the spare room into a temporary bedroom because I am unable to walk up the stairs. In it is a hospital bed they’ve hired along with an overbed tray and an ergonomic chair. At my request, a trestle table is set up in the corner of the room stacked with notebooks and folders from my room upstairs. 

Sitting at my makeshift desk, I start by sorting through the notebooks that are the most important to me. In them, I have written pages detailing the careful brick-by-slow-brick version of myself that I had spent many years building. 

For as long as I can remember I have wanted to work in the publishing industry and live in London. In the early 2000s, before my teenage years, magazines like Dolly and Girlfriend were all the rage and I was obsessed with them. My love for storytelling came from consuming these magazines but as I grew older, I wanted more from them. I longed to see myself and other types of people reflected in the pages of these magazines, and I knew we had more to offer young girls than this limited version of womanhood we had been made to feel like we needed to aspire to. 

I spent a lot of my youth desperately envisioning a future where I was independent, successful and using publishing to make a difference. But to me these were never just dreams. 

Both children of immigrants, my parents worked relentlessly hard to provide for me and my brother. In those early days, Dad worked very long hours, taking off one day a fortnight while setting up his own business. Because of his long hours, the time we did spend together was relished and the values passed down to me I held onto closely.

More than anything else, my brother and I were taught the importance of hard work. And for all the complexities woven into the fabric of my family dynamic, I have always been proud of the values my parents instilled in me from a young age. I also liked the idea of working hard, it was something within my control and that I didn’t have to rely on anyone else for. 

And so my journals, filled with magazine cut-outs of visions for my future, also became a record of my carefully curated plan for how to make my dreams a reality: what subjects I would need to study at school, which university would be the best for me to attend, where I wanted to live in order to be alongside other like-minded people and what would be the perfect part-time job so that I could earn the money to live where I wanted to live. 

Looking back over these notebook pages, I see just how tirelessly I had worked to make sure my future would be the one I expected. So it’s strange to see what makes up my life now. Opening a new notebook, I now fill the pages with worksheets from rehab, my daily recovery exercises and notes from my psychologist’s office with strategies on how to start driving again. Then I pause as I come across my most recent notes from my occupational therapist. 

As a patient at Donvale Rehabilitation Hospital, I had worked closely with my occupational therapist (OT) for a number of weeks. She was a welcomed presence because all the patients I was surrounded by were over the age of 65. But when she handed me a piece of paper with the heading Pacing for Pain, I inadvertently rolled my eyes. "Pacing is for people who don’t want to put in the hard yards," I thought to myself. 

She handed me a tub that weighed the same amount as my camera – 5kg – and asked me to start carrying this tub around the room in gradually increasing increments of time. That day, she asked me to carry it for 30 seconds, the next day one minute and so forth until I could carry the tub for 10 minutes without too much pain. 

Instinctively, I wanted to grab the tub and carry it the full 10 minutes. I knew that I could do it. But as I went to pick it up, I moved too quickly and in the wrong way, and the pain that’s usually just in my lower back spread down my left leg so that I was unable to do anything for the rest of the day. 

My OT had told me about the importance of rest. But back at home, as I look over all the things that used to make up my life, I’m not so much worried about the constant pain I now feel in my lower back as I am the time that it’s going to take away from me achieving the vision of my career I had so carefully mapped out. 

I sit at my desk for a few minutes, picturing everything I still need to do to be able to work independently again, before my back starts screaming out at me from sitting in my chair for longer than I can handle. I resign myself to lying back down on the hospital bed on the other side of the room and I feel so guilty over what my body is now incapable of doing.

But this is only temporary and that’s what I must keep reminding myself of. 

Moments
of impact

LONG READ

The journey to understanding, accepting and making space for our own disabilities is long and ongoing. Relief comes from a world that can learn to slow down, listen to and make space for us too.

Content Warning: Car accident, PTSD

One

It was on a warm night in January when it happened. 

I am on summer break one year into my photography degree, enjoying a trip to Wilsons Prom with my high school friends. During the day, we walk along the coast and up hillsides while I take photos on my film camera. At night, we play King’s Cup on the cold concrete of the basketball court, remembering the times we spent together in school – who got together, who split up – and talking about how we never want to grow old.

One evening, we go out for dinner to a restaurant that’s closer to the main part of town. On the way back, we split up into three separate cars and I leave with one of my best friends. I flick through the songs on Demi’s phone and blast the music from the speakers of her car. I kick off my shoes, settling in. We joke about who will get home first as Demi edges her foot a little harder on the pedal. Then we make a wrong turn and head around a bend way too fast.

There are breaks in my memory. What I do recall is the sudden sensation of swerving, of the road and trees blurring into one. For a moment, it’s as if we’re floating, the world is drifting past so fast, so fast, why are we moving so fast? I try to distinguish the shapes ahead of me. There’s a break between the trees and I think we’ll just pass through them and be fine, until there’s a bang as loud and violent as a bomb. The airbags deploy, the windscreen shatters, I jolt forward and then crack

In that moment of impact, the car bounces off the tree and swerves 180 degrees so that we are turned to face the road. Demi looks at me. For a moment, we just stare at each other before she says – "It’s fine. We’re okay."

But I know I’m not okay. I try to breathe and the air comes out in ragged breaths. It’s as though something heavy is weighing down my lungs, and this weight prevents them from working properly. I’m so focused on my breath that I’m not even aware I’m using my arms to hold up the weight of my back and legs.

I shake my head. "I can’t breathe," I tell her, "Demi I can’t breathe."

In my mind I know I’m going to die.

TWO

I don’t sleep. In the early hours of the next morning – after numerous x-rays and MRIs, monitoring my lungs to make sure they don’t collapse and moving me from the regional hospital to the metro one –  the neurosurgeon comes to see me. Dr Addams* is a middle aged man with dark hair and a poker face. When he speaks, his voice is soft and he addresses me by using my name, however his gaze never quite reaches mine.

“You have an unstable fracture on your L3 vertebrae”, he says, looking at my scans instead of me. “You will need to be operated on and the procedure will involve a spinal fusion.” 

The operation carries the risk of certain complications: infection, nerve damage, bladder problems, blood clots – he keeps talking to my parents but I have stopped listening.  “You’re lucky,” he says, “with a spinal fusion so young, in six to eight weeks you’ll be just as you were before.”

Three

At home, my parents have converted the spare room into a temporary bedroom because I am unable to walk up the stairs. In it is a hospital bed they’ve hired along with an overbed tray and an ergonomic chair. At my request, a trestle table is set up in the corner of the room stacked with notebooks and folders from my room upstairs. 

Sitting at my makeshift desk, I start by sorting through the notebooks that are the most important to me. In them, I have written pages detailing the careful brick-by-slow-brick version of myself that I had spent many years building. 

For as long as I can remember I have wanted to work in the publishing industry and live in London. In the early 2000s, before my teenage years, magazines like Dolly and Girlfriend were all the rage and I was obsessed with them. My love for storytelling came from consuming these magazines but as I grew older, I wanted more from them. I longed to see myself and other types of people reflected in the pages of these magazines, and I knew we had more to offer young girls than this limited version of womanhood we had been made to feel like we needed to aspire to. 

I spent a lot of my youth desperately envisioning a future where I was independent, successful and using publishing to make a difference. But to me these were never just dreams. 

Both children of immigrants, my parents worked relentlessly hard to provide for me and my brother. In those early days, Dad worked very long hours, taking off one day a fortnight while setting up his own business. Because of his long hours, the time we did spend together was relished and the values passed down to me I held onto closely.

More than anything else, my brother and I were taught the importance of hard work. And for all the complexities woven into the fabric of my family dynamic, I have always been proud of the values my parents instilled in me from a young age. I also liked the idea of working hard, it was something within my control and that I didn’t have to rely on anyone else for. 

And so my journals, filled with magazine cut-outs of visions for my future, also became a record of my carefully curated plan for how to make my dreams a reality: what subjects I would need to study at school, which university would be the best for me to attend, where I wanted to live in order to be alongside other like-minded people and what would be the perfect part-time job so that I could earn the money to live where I wanted to live. 

Looking back over these notebook pages, I see just how tirelessly I had worked to make sure my future would be the one I expected. So it’s strange to see what makes up my life now. Opening a new notebook, I now fill the pages with worksheets from rehab, my daily recovery exercises and notes from my psychologist’s office with strategies on how to start driving again. Then I pause as I come across my most recent notes from my occupational therapist. 

As a patient at Donvale Rehabilitation Hospital, I had worked closely with my occupational therapist (OT) for a number of weeks. She was a welcomed presence because all the patients I was surrounded by were over the age of 65. But when she handed me a piece of paper with the heading Pacing for Pain, I inadvertently rolled my eyes. "Pacing is for people who don’t want to put in the hard yards," I thought to myself. 

She handed me a tub that weighed the same amount as my camera – 5kg – and asked me to start carrying this tub around the room in gradually increasing increments of time. That day, she asked me to carry it for 30 seconds, the next day one minute and so forth until I could carry the tub for 10 minutes without too much pain. 

Instinctively, I wanted to grab the tub and carry it the full 10 minutes. I knew that I could do it. But as I went to pick it up, I moved too quickly and in the wrong way, and the pain that’s usually just in my lower back spread down my left leg so that I was unable to do anything for the rest of the day. 

My OT had told me about the importance of rest. But back at home, as I look over all the things that used to make up my life, I’m not so much worried about the constant pain I now feel in my lower back as I am the time that it’s going to take away from me achieving the vision of my career I had so carefully mapped out. 

I sit at my desk for a few minutes, picturing everything I still need to do to be able to work independently again, before my back starts screaming out at me from sitting in my chair for longer than I can handle. I resign myself to lying back down on the hospital bed on the other side of the room and I feel so guilty over what my body is now incapable of doing.

But this is only temporary and that’s what I must keep reminding myself of. 

"Moving through the world in constant pain is moving through the world where your body never stops speaking to you."

Four

In the months that follow, I work consistently on getting better – following my daily routines and strengthening my lower back –  and it’s true, over time my condition does improve. I start to walk greater distances, I get in the car and overcome my fear of driving, and I go back to university. But two years on from the accident, I am still in a lot of pain, too much pain for the amount of time that has elapsed. 

I receive an email asking about my intentions for my upcoming graduation ceremony and my mouse hovers over both of the options. 

I think about my friends who have already graduated the year before. I finished my photography degree only three months after them by taking on an extra workload in my final semester and then three summer electives. But while most of them now have jobs working in the industry, I know I’m still in too much pain to start work as a photographer. 

I think back on my life and how it’s largely defined into two categories – before and after. Before, while I still experienced my own set of struggles, my life was relatively normal and I moved through the world carefree. I didn’t need to make a careful plan every time I left the house. I didn’t have to think – where would I be sitting and how long would I be sitting for? Does the venue I am going to have seats with an adequate backrest? Will my friends be annoyed if I tell them I need to leave early because I am in too much pain? How will I even enjoy myself when I am in so much pain anyway? 

I am frustrated at myself and my body for not being able to do what I need it to do, and I don’t understand why I’m still in so much pain every day –  surely this can’t be forever. My mantra while recovering was – don’t worry about the pain right now, this is only temporary. But now I am two years post accident and in the last six months I haven't made any huge improvements. Despite my surgeon telling me that I would be just as I was before, I start to wonder if this might be it – that there might not be a 'getting better'. 

My mouse continues to hover over both options until eventually I click: Not attending. And as I’m confronted with the realisation that I have just completed a degree in a field I don’t have a future in, I find myself doing the one thing I don’t usually do – I lose hope. I grieve for all the time I’ve lost, the person I no longer am and now the person I will never become. 

Five

Exactly six years on from my car accident, I have my first appointment with a new neurosurgeon, Dr Singh*. Entering his office, I notice some similarities between him and my surgeon Dr Addams. Both have short black hair and a broad face but the difference here is that Dr Singh’s eyes meet mine. He walks towards me purposefully, shaking my hand and my mother’s too. He’s very confident and I can tell instantly that he cares. 

Without wasting a second, Dr Singh outlines to me that my continued pain is likely due to two reasons. Firstly, the pins put in my back from the fusion mean my spine lacks mobility and so other areas in my body are overcompensating for it. Secondly, these same pins are putting extra pressure on the lower region of my spine – on my 'pars defect' at L5. 

Mum and I look at him confused and ask him what a pars defect is. Dr Singh mirrors our confusion and then starts to get angry. He asks for more specific details about my time in hospital. We tell him what Dr Addams told us – that the spinal fusion was the only decent way forward and that he had never mentioned anything about a pars defect.

Still in outrage, Dr Singh explains that a pars defect is a stress fracture of the bones that make up the lower spine. Sometimes children are born with a very thin pars area which puts them at increased risk for injury. In my case, he believes the pars defect was most likely present long before my car accident. And by having a spinal fusion that has put years of added pressure on my pre-existing fracture, my spine has been slowly deteriorating over time. By looking at my scans, Dr Singh tells me that I now have the spine of someone in the elderly stages of their life. 

I always thought the hardest thing I would have to go through would be my car accident but what comes next is a very dark period in my life. 

At first I am angry. I feel incredible anger towards Dr Addams and his negligence by not giving me critical information about my spinal health. I realise I’ve moved away from a car accident that fractured my spine and would require healing. Healing implies that I would get better – that there was an endpoint to my pain and I would return to how I was before – just as Dr Addams had told me I would. Now I know the pain I am in every single day will most likely remain for the rest of my life and I don’t know what to do with that knowledge. 

I don’t know what to make of a condition that is antithetical to the entire way that I've lived my life. I’ve always tackled my problems face-on – through planning and hard work. But no amount of hard work will allow me to be able to sit at my desk all day without needing constant breaks and then suffering from enormous pain flare-ups. If I can only tolerate a few hours of work per day, how will I support myself financially, how will I work or live overseas, how will I ever achieve my career goals?

I don’t know how to live life with the knowledge that I will always be in pain and I don't know if I want to. My mind, which is always on fast forward, questions the quality of my life. I’m now 25, I was only 19 when this happened to me. I foresee a life of relentless pain, anxiety and struggle. 

Moving through the world in constant pain is moving through the world where your body never stops speaking to you. The knowledge that I will carry this pain with me forever makes everything feel heavier. Makes moving through life heavier.

When I’m having coffee with my friend and the ache in my lower back intensifies after only minutes of sitting down, I become sad because I know I will never be carefree with my friends and not in pain. I will never be able to make plans and not worry about the toolkit I must always have with me to manage the pain. 

My body and my mind are never still. And it is hard – it’s so fucking hard to be happy.

It’s weird how pain and identity merge. You experience physical pain but it can’t be removed from emotion. There is an emotional response to pain that morphs into your identity so that chronic pain is more than the experience of pain itself – it's the mental toll of living with a condition that is long term. 

Chronic pain is also releasing yourself from the ways you once experienced life. The tools, the resources, and the language are different. I can’t come at it with guns blazing – and the irony of this is not lost on me. Finding a way to live in the chaos of chronic illness is at odds with how I have always approached life and the values I learnt from a young age. But while I have been re-learning how to move through the world in a way that works for my disability, it doesn’t mean that the rest of the world has embraced my new way of living.

There are times when it has felt easier. Like during Covid when the world paused for illness because it threatened to affect the majority. I felt a weird sense of reprieve during this time, because I was able to just exist without feeling the constant pressure of needing to contribute something back. For a brief moment, my peers also had to experience the same uncertainty that I live with constantly – always in a state of not knowing when they could make plans, hang out with friends or move around as they please. 

Then there are times when it’s been harder, like when the world returned 'to normal' and I felt lonelier and more disconnected from my friends than ever before. While most others got to enjoy a rediscovered 'freedom' after Covid, I still wake up each morning unsure of how much of the day I will be able to get through, or how many hours of my week will be spent in waiting rooms or doctors offices trying to manage my pain instead of going out and spending time with friends. 

I feel at a loss when my loved ones don't understand or take my accessibility needs into consideration – and I can feel friendships slipping away because of it. But how can they understand? Much of what I go through is invisible to others and our 'normal' lives haven't been built with illness in mind. 

But just because we can’t see something doesn’t mean we shouldn’t learn to make space for it, or doubt that it exists. And while I know the next step for me is to learn how to better communicate my experiences with others, I hope that others can get better at recognising invisible illness and disability as real, and make space for us in return. 

*Names has been changed.

Four

In the months that follow, I work consistently on getting better – following my daily routines and strengthening my lower back –  and it’s true, over time my condition does improve. I start to walk greater distances, I get in the car and overcome my fear of driving, and I go back to university. But two years on from the accident, I am still in a lot of pain, too much pain for the amount of time that has elapsed. 

I receive an email asking about my intentions for my upcoming graduation ceremony and my mouse hovers over both of the options. 

I think about my friends who have already graduated the year before. I finished my photography degree only three months after them by taking on an extra workload in my final semester and then three summer electives. But while most of them now have jobs working in the industry, I know I’m still in too much pain to start work as a photographer. 

I think back on my life and how it’s largely defined into two categories – before and after. Before, while I still experienced my own set of struggles, my life was relatively normal and I moved through the world carefree. I didn’t need to make a careful plan every time I left the house. I didn’t have to think – where would I be sitting and how long would I be sitting for? Does the venue I am going to have seats with an adequate backrest? Will my friends be annoyed if I tell them I need to leave early because I am in too much pain? How will I even enjoy myself when I am in so much pain anyway? 

I am frustrated at myself and my body for not being able to do what I need it to do, and I don’t understand why I’m still in so much pain every day –  surely this can’t be forever. My mantra while recovering was – don’t worry about the pain right now, this is only temporary. But now I am two years post accident and in the last six months I haven't made any huge improvements. Despite my surgeon telling me that I would be just as I was before, I start to wonder if this might be it – that there might not be a 'getting better'. 

My mouse continues to hover over both options until eventually I click: Not attending. And as I’m confronted with the realisation that I have just completed a degree in a field I don’t have a future in, I find myself doing the one thing I don’t usually do – I lose hope. I grieve for all the time I’ve lost, the person I no longer am and now the person I will never become. 

Five

Exactly six years on from my car accident, I have my first appointment with a new neurosurgeon, Dr Singh*. Entering his office, I notice some similarities between him and my surgeon Dr Addams. Both have short black hair and a broad face but the difference here is that Dr Singh’s eyes meet mine. He walks towards me purposefully, shaking my hand and my mother’s too. He’s very confident and I can tell instantly that he cares. 

Without wasting a second, Dr Singh outlines to me that my continued pain is likely due to two reasons. Firstly, the pins put in my back from the fusion mean my spine lacks mobility and so other areas in my body are overcompensating for it. Secondly, these same pins are putting extra pressure on the lower region of my spine – on my 'pars defect' at L5. 

Mum and I look at him confused and ask him what a pars defect is. Dr Singh mirrors our confusion and then starts to get angry. He asks for more specific details about my time in hospital. We tell him what Dr Addams told us – that the spinal fusion was the only decent way forward and that he had never mentioned anything about a pars defect.

Still in outrage, Dr Singh explains that a pars defect is a stress fracture of the bones that make up the lower spine. Sometimes children are born with a very thin pars area which puts them at increased risk for injury. In my case, he believes the pars defect was most likely present long before my car accident. And by having a spinal fusion that has put years of added pressure on my pre-existing fracture, my spine has been slowly deteriorating over time. By looking at my scans, Dr Singh tells me that I now have the spine of someone in the elderly stages of their life. 

I always thought the hardest thing I would have to go through would be my car accident but what comes next is a very dark period in my life. 

At first I am angry. I feel incredible anger towards Dr Addams and his negligence by not giving me critical information about my spinal health. I realise I’ve moved away from a car accident that fractured my spine and would require healing. Healing implies that I would get better – that there was an endpoint to my pain and I would return to how I was before – just as Dr Addams had told me I would. Now I know the pain I am in every single day will most likely remain for the rest of my life and I don’t know what to do with that knowledge. 

I don’t know what to make of a condition that is antithetical to the entire way that I've lived my life. I’ve always tackled my problems face-on – through planning and hard work. But no amount of hard work will allow me to be able to sit at my desk all day without needing constant breaks and then suffering from enormous pain flare-ups. If I can only tolerate a few hours of work per day, how will I support myself financially, how will I work or live overseas, how will I ever achieve my career goals?

I don’t know how to live life with the knowledge that I will always be in pain and I don't know if I want to. My mind, which is always on fast forward, questions the quality of my life. I’m now 25, I was only 19 when this happened to me. I foresee a life of relentless pain, anxiety and struggle. 

Moving through the world in constant pain is moving through the world where your body never stops speaking to you. The knowledge that I will carry this pain with me forever makes everything feel heavier. Makes moving through life heavier.

When I’m having coffee with my friend and the ache in my lower back intensifies after only minutes of sitting down, I become sad because I know I will never be carefree with my friends and not in pain. I will never be able to make plans and not worry about the toolkit I must always have with me to manage the pain. 

My body and my mind are never still. And it is hard – it’s so fucking hard to be happy.

It’s weird how pain and identity merge. You experience physical pain but it can’t be removed from emotion. There is an emotional response to pain that morphs into your identity so that chronic pain is more than the experience of pain itself – it's the mental toll of living with a condition that is long term. 

Chronic pain is also releasing yourself from the ways you once experienced life. The tools, the resources, and the language are different. I can’t come at it with guns blazing – and the irony of this is not lost on me. Finding a way to live in the chaos of chronic illness is at odds with how I have always approached life and the values I learnt from a young age. But while I have been re-learning how to move through the world in a way that works for my disability, it doesn’t mean that the rest of the world has embraced my new way of living.

There are times when it has felt easier. Like during Covid when the world paused for illness because it threatened to affect the majority. I felt a weird sense of reprieve during this time, because I was able to just exist without feeling the constant pressure of needing to contribute something back. For a brief moment, my peers also had to experience the same uncertainty that I live with constantly – always in a state of not knowing when they could make plans, hang out with friends or move around as they please. 

Then there are times when it’s been harder, like when the world returned 'to normal' and I felt lonelier and more disconnected from my friends than ever before. While most others got to enjoy a rediscovered 'freedom' after Covid, I still wake up each morning unsure of how much of the day I will be able to get through, or how many hours of my week will be spent in waiting rooms or doctors offices trying to manage my pain instead of going out and spending time with friends. 

I feel at a loss when my loved ones don't understand or take my accessibility needs into consideration – and I can feel friendships slipping away because of it. But how can they understand? Much of what I go through is invisible to others and our 'normal' lives haven't been built with illness in mind. 

But just because we can’t see something doesn’t mean we shouldn’t learn to make space for it, or doubt that it exists. And while I know the next step for me is to learn how to better communicate my experiences with others, I hope that others can get better at recognising invisible illness and disability as real, and make space for us in return. 

*Names has been changed.

Representation matters:
(unless it sucks)

Representation matters! But it counts for crumbs when the portrayals we see are not accurate, sensitive or helpful. What are the harms of misrepresentation in media for people with disability and chronic illness?

LONG READ

Representation matters! But it counts for crumbs when the portrayals we see are not accurate, sensitive or helpful. What are the harms of misrepresentation in media for people with disability and chronic illness?

LONG READ

Introduction

Growing up, what I gleaned from television and movies was that I didn’t exist. On the screens of my childhood, autistic people only ever appeared accidentally; I watched Ghostbusters on repeat, featuring writer and actor Dan Ackroyd who was later diagnosed with autism. However, this representation wasn’t explicit, and it counts for crumbs when we consider the prevalence of disability.

In my experience, this lack of representation was a form of misrepresentation in itself. After all, why wasn’t I seeing people like me anywhere, even just existing in mediated worlds? The absence was telling; it told me that I was alone.

Two decades later, I’m now seeing more depictions of disability than ever before, but that doesn’t mean this representation is always accurate, sensitive or helpful.

Media plays a huge role in shaping attitudes towards disability and illness. Especially for invisible conditions, representation is often based on assumptions from the outside looking in, rather than the true experiences of those with the condition. These tropes are regurgitated on and off the screen, placing the burden on us to correct misinformation and prove that we’re not just living stereotypes.

RUDIMENTARY
REPRESENTATION

RUDIMENTARY REPRESENTATION

During my teenage years, there was an episode of Arthur – a show I love – introducing a new autistic character. For its time, the segment was solid (albeit rudimentary) in educating its young audience. However, the character (Carl) then largely disappeared into a background role, making his presence feel like a ‘very special episode’ rather than genuine inclusion in the world. In the same show, the character of Buster is diagnosed with asthma. While there’s an episode focused on that condition, Buster also has other storylines and traits – he’s not just the kid with asthma.

I still have an affinity for Carl from Arthur, but I can see his two-dimensionality now (and not just literally!). He very much falls into the category of troubled or quirky genius – an expectation that’s followed me throughout my life, which I’ve failed to fulfill. Carl’s emotional dysregulation looks much milder than mine too. Of course, this is true to some people’s experiences of autism, but it didn’t make me feel seen as a teenager (and now adult) struggling immensely with big emotions.

I find it hard to claim any autistic character as wholly ‘bad’ representation unless they’re downright offensive. After all, autistic people’s experiences are so diverse. What one person might consider ‘stereotypical’ is another person’s everyday life, fitting them to a tee.

That said, as I have written previously, I have a high standard of what I’d confidently recommend as ‘good’ representation. I consider how well pop culture unpacks and acknowledges the diversity of autistic experiences, and the breadth of its research and compassion towards the community. I also look for ‘green flags’ in the production of media. For example, consultation and inclusion of autistic people as writers, actors, and – most importantly – leaders in their own stories.

We shouldn’t only exist for the edification of others – to make them feel good, informed and charitable – before we fade into the background, never to disrupt their world again.

Similarly, Ruby Mountford, an LGBTQIA+ and autistic activist with attention-deficit/hyperactivity disorder (ADHD), identifies some archetypes that neurodivergent characters commonly fall into: the manic pixie dream girl, the forever child, the ‘mean-but-right’ savant, the hoarding loner, the dangerous threat, or the ‘glamorous-but-empty’ person.

To this list, Siyanthi Jayasooriya* adds the trope of the neurodivergent sidekick:

“I hate how the autistic, anxious or depressed character is the loveable sidekick to every story, and the main character is the neurotypical person that is seen as ‘brave’ while the side character is just the comedic relief (for example, Max in
Ginny and Georgia). I feel like I have taken on a side character role in my life too.”

These archetypes limit the ways we’re seen to exist in the world, and pigeonhole our humanity into narrow, tokenistic categories.

THE FAKER

For painful and energy-limiting conditions, there’s a noxiously pervasive idea that we’re faking our struggles, or that we can ‘overcome’ our disabilities if we try hard enough. Dean, who has a rare disability that results in chronic pain, is often asked if he’s faking or exaggerating his pain to evade responsibilities or to garner attention.

Jacinta Dietrich, a neurodivergent writer and podcaster, echoes this sentiment regarding her chronic fatigue syndrome:

“People with chronic fatigue are [seen as] weak or as faking it to get out of doing things. [There’s a belief] that we just need to exercise more. And neurodivergent people are [seen as] overreacting [about our experiences].”

In an episode of Curb Your Enthusiasm, Larry David’s character catches someone faking a disability to use an accessible parking permit. In reality, faking a disability or illness is far rarer than actually having one. But these storylines result in people’s real disability supports and accommodations being called into question, and overstate the issue of disability faking. This also means that our reasonable accommodations, like accessible parking, are policed by members of the public or treated as a privilege, not a right.

Sub-par representation doesn’t just result in hurt feelings and dissatisfying entertainment. It affects our everyday lives – how we’re treated in personal relationships, at work, and out in the world. It informs our doctors, employers, friends, family, and even how (and if) we advocate for ourselves. Dean says:

“I find it difficult to speak up when I’m in pain or when I’m having trouble with something that pertains to my disability. I find it hard to voice my concerns without people jumping to the conclusion [that I’m faking it or trying to get out of doing something].”

For Jacinta, harmful tropes have made it difficult to seek support. She shares:

“[Harmful representation] gives other people a ridiculous sense of power, in that they [feel entitled] to tell you about your situation because they saw this trope or whatever.”

Another example is the BBC documentary Sickness & Lies, which focuses on the phenomenon of Munchausen by Internet, or people who are accused of faking and proliferating their symptoms online. Again, this draws the public’s attention to the fear of potential fakers, while those with disabilities and illnesses rarely receive a similar degree of concern and attention. In fact, disabled people are more likely to feign wellness – many of us do this every day! – than non-disabled people feign sickness. Outrage over fakers shouldn’t come before outrage over ableism. Our collective commitment to accessibility, compassion and solidarity needs to be stronger than our desire to identify and punish perceived ‘fakers’. 

TRIVIALISING

Social media videos can further complicate the landscape of disability representation. While some find community online, others feel their struggles are sanitised and commodified into clickbait. This has certainly been my experience as an autistic person with conspicuous traits and significant impairments.

Daniel Gabriel, a person with ADHD and mental health conditions, says:

“The optics and language of mental illness [and neurodivergence] is used a lot for regular things, trivialised into little soundbites… while the actual struggles are ignored. For example, there’s a recent TikTok trend that says, 'the intrusive thoughts won', where someone will do something tame and quirky, minimising how distressing actual intrusive thoughts are. The widespread minimisation of various terms and symptoms makes me feel somewhat minimised myself.”

This trivialisation of disability and illness also results in conditional acceptance of more ‘palatable’ symptoms or experiences. That is, some disabled experiences are considered more consumable for mainstream audiences, while others remain taboo. For example, Dean uses a colostomy bag, and this is something that isn’t depicted on screen much at all. In a similar vein, I find that there’s a strong mainstream appetite for ‘cute’ content around autism, but very little interest and compassion for the unsavoury traits that make life incredibly hard.

Representation is often limited to those who are perceived as closer to ‘normal’, or who can secure some form of acceptance – even if it’s very conditional. This inevitably amplifies those with relative privilege – such as white privilege and cisgender privilege – rather than showing disability and illness within a wider variety of people who experience intersecting forms of marginalisation.

In terms of intersectionality, Dean reflects on the invisibility of those who experience ableism, racism and homophobia all at once:

“It’s rare we get to see or hear stories about people of colour who are gay, and also have a disability on top of that. [As a] disabled and queer person of colour, our voices are heard much less and taken less seriously because we are seen as ‘incapable’ because of our disabilities, too ‘dramatic’ because of our queerness, and too ‘aggressive’ or ‘exotic’ because of our race.”

AS INSULT OR THE BUTT OF THE JOKE

My friend Isy was recently diagnosed with type 1 diabetes. Thinking about diabetes in the media, one of their main reference points was Paul Blart: Mall Cop. This film uses diabetes as a fatphobic punchline for jokes about the protagonist’s weight and diet. They tell me:

“[A misconception about diabetes] is that of personal fault, and diabetes being a moral failing. It’s the butt of the joke around sweet or ‘unhealthy’ foods.”

Fatphobic ableism and health-shaming is often compounded by other factors too, particularly race and gender. Fatphobia itself is strongly tied to anti-Blackness, while in so-called Australia, First Nations people also bear the brunt of fatphobia. Indigenous people also experience higher rates of illness and disability than non-Indigenous people due to the ongoing impacts of colonisation, with racism serving as a health determinant itself. Jokes about disability and illness punch down at people who are already marginalised, often in multiple ways.

Some also seem to think disability is fair game as an insult, even in circles that consider themselves progressive. We see this when morally bad people are armchair-diagnosed with conditions. These comments are unlikely to reach the high-profile person themselves, but hurts those with the disability or illness, who absorb this information, and whose lives are affected by the stereotypes they inform.

Christopher Bryant, a playwright with a traumatic brain injury (TBI), tells me of recently seeing an Instagram post by The Saturday Paper that conflated Tony Abbott’s racism and anti-Indigenous politics to having a brain injury.

“I have my Ph.D., which I obtained after I acquired my brain injury, so partly I feel like it shouldn’t affect me as much as it does, but [it just makes] me embarrassed of something I can’t change. Seeing that slight on Instagram… stopped me in my tracks as I sat with it and felt uncomfortable. It affects my self-confidence and my willingness to disclose or talk about my disability.”

These ableist insults are all too familiar. In 2018, a sketch program on Channel 10 called Skit Happens – touting ‘edgy humour’ – parodied the The Good Doctor as ‘The Good Hospital’. In this sketch, the joke was that all the doctors in this hospital are autistic, and their associated behaviours were dramatised and played for laughs. I can’t remember a single other thing about this short-lived program, except for being the punchline of their pathetic joke. 

INSPIRATION
PORN

INSPIRATION PORN

In many other cases, disability is fodder for inspiration porn, or milked for the purpose of a non-disabled character. Inspiration porn generally revolves around the comfort and sensibilities of non-disabled viewers. Shows like The Undateables and Love on the Spectrum rely on the voyeurism of its audience, and make a spectacle of the disabled person. By creating ‘wholesome’ entertainment about us simply living our lives, non-disabled people get to feel warm and fuzzy without focusing on how they can show their allyship and make the world more accessible.

As Christopher shares, inspiration porn also feeds into existing stereotypes about disabled exceptionalism:

“There’s a tired cliche of a superhuman disabled person, someone who’s shown to be virtuous and wonderful ‘despite’ their disability, which sets up and idea of disabled exceptionalism, where someone has to ‘make up’ for their disability and their burden, or prove to the world that they have ‘worth’ beyond their disability.”


With some exceptions,  inspiration porn also tends to prioritise people who are white, cishet and non-queer, who have verbal speaking abilities and do not have intellectual disabilities or complex support needs. While everyone’s disability experiences are different, it’s no coincidence that some get pride of place.

The whiteness of disability in media is a continuing issue that has inspired hashtags such as #DisabilityTooWhite, created by Vilissa Thompson.

In discussing Western media, Siyanthi speaks of the complexity of being an autistic Sri Lankan woman:

“Autism is still very much a taboo subject [in Sri Lanka] because arranged marriages are huge here, and if there is autism in the family, people are unwilling to marry. Because of this, there is absolutely no representation in the media for autistic people. If there is, it is incredibly offensive and used for a cheap joke. I’d love to see Western countries show more representation in race and gender for autism to encourage other countries to be more accepting.”

Ruby notes a lack of queer and disabled representation to align with their own identity too:

“There’s a very small pool to draw from. Proud bisexual identities are rarely represented in media, and non-binary identities are barely present.”

As an autistic lesbian myself, I feel that many shows featuring autistic people, especially those that revolve around dating and romance, don’t show the added complexities of being queer. I’m often infantilised, or people assume that I can’t understand myself well enough to have a ‘non-normative’ sexuality, or any sexuality at all. 

GOOD REPRESENTATION

Over time, I’ve noticed a growing emphasis on lived experience, and incorporating this within storytelling. As it should be – nothing about us without us, after all.

Christopher has found some recent positive representation:

“I love the work of Ryan O’Connell [of Netflix’s Special], Back to Back Theatre and Rawcus Ensemble, and the short-lived Queer as Folk reboot (RIP). These artists [and programs] have helped facilitate and create disabled stories and characters that are disabled-led, genuine, nuanced: where disabled people get to be funny, be sexy, be evil, be rude, be smart, be savage, be all these things that aren’t pinned down to their disability.”

For me, As We See It particularly resonates. It depicts multiple autistic people with different strengths, challenges and support needs, without sensationalising their disability or avoiding the less flattering traits that can come with being autistic. I’m able to see a bit of myself in each of them and unlike a lot of shows framed around autism, it doesn’t make me feel like a defective autistic person for not being exceptional and for having obvious difficulties. It even tackles agoraphobia through a compassionate lens, which is an ongoing struggle of mine that I rarely see portrayed in the media, much less from an autistic perspective.

For Jacinta, the character of Quinni from Heartbreak High is a favourite:

“Quinni is such a good character and quality representation because she is a whole person, a three-dimensional character, … rather than focusing on autism as her only identity or facet. They’ve also done a brilliant job in showcasing autistic experiences from the inside, rather than looking from the outside which is more common.”

Ruby also reflects:

“I can find parts of myself in Extraordinary Attorney Woo, The Owl House and Heartbreak High, but two of those three are aimed at people under 18.”

While these examples are a good start, they only scratch the surface in showing a more nuanced variety of autistic experiences. Siyanthi tells me:

“When I tell people that I’m autistic, they’re generally a bit shocked. Despite explaining that I have a diagnosis, they’re still unwilling to believe me because of how they have seen autism portrayed in the media.”

Although some portrayals of neurodivergence may be growing popularity in the media, chronic illnesses and other disabilities seem slower to reach the limelight in the same way. Dean has still never seen a person in the media with his disability. But Isy tells me that Netflix’s The Baby-Sitters Club may offer some positive and accurate representation of type 1 diabetes, and some celebrities are now tackling misinformation by creating documentaries  of their own chronic illnesses and disabilities.

These are encouraging markers of progress, even if we’re often still searching for crumbs. The impacts of poor representation may be unique to our specific situations, but our hopes for improved representation are largely unanimous – with the main areas of improvement being research, intent, nuance, diversity and being depicted as full people.

Christopher thoughtfully concludes:

“There aren’t many places where disabled people get to just be in a narrative, to exist in a story where their disability isn’t seen as a burden, where it isn’t the core focus of the narrative but is still present. Hopefully there’ll be more representation to come, because disability is present in our lives whether you can see it or not.”

*Name has been changed.
A photo of Renay sitting on a stool in front of a white sheet, hung up on a hills hoist. There are words written on the sheet that read: "I'd not even noticed the layers of my intersectional quilt lighten. At that moment, I was just another Blak disabled woman doomed to carry the weight of that forever.
A photo of Renay sitting on a stool in front of a white sheet, hung up on a hills hoist. There are words written on the sheet that read: "I'd not even noticed the layers of my intersectional quilt lighten. At that moment, I was just another Blak disabled woman doomed to carry the weight of that forever.
A photo of Renay sitting on a stool in front of a white sheet, hung up on a hills hoist. There are words written on the sheet that read: "I'd not even noticed the layers of my intersectional quilt lighten. At that moment, I was just another Blak disabled woman doomed to carry the weight of that forever.
A photo of Renay sitting on a stool in front of a white sheet, hung up on a hills hoist. There are words written on the sheet that read: "I'd not even noticed the layers of my intersectional quilt lighten. At that moment, I was just another Blak disabled woman doomed to carry the weight of that forever.
Three people. Three stories. Three generations of trauma trying to survive within the Australian medical system.

1. Cas

1. Cas

1. Cas

Tap

2. Renay

2. Renay

2. Renay

3. Big

3. Big

3. Big

LONG READ
Please be aware that these written materials and audio recordings contain the names of Aboriginal and/or Torres Strait Islander people who have died.
This is some text inside of a div block.

Cas's Story

Cast your mind back a way about 20 years ago now. Nineteen-year-old me spent my time either at TAFE, engaging my passion for storytelling through a film and television course I was studying, or at the home I shared with my mum, Cas. Throughout my childhood, Mum would so often take us kids down to the video store, and scour through the shelves of movies, documentaries and stories for us to watch and then discuss as a family. These times spent together solidified my desire to pursue storytelling as my vocation.  

When we learned Mum had a brain aneurysm that could kill her at any moment, it was all we could focus on until the day came when she was wheeled into the operating room. Instead of sitting alone waiting for the call to say she’d survived, I went walking around the local shops where I ended up spending $13 on a bottle of conditioner. It didn’t leave me with much money, but it was Mum’s favourite and her emotional attachment to her hair had always been intense. 

After I got the call to say she was in recovery I rushed back to see her and was shocked at the sight of my effervescent mum, silent and unable to move the left side of her body. I gently washed the dried blood from her hair, while trying to avoid the line of staples embedded in her scalp, her face still but her eyes communicating her distress.

The next day, my aunties arrived like the cavalry and forced the hospital to admit that Mum was having ‘postoperative complications’. Before this point, I had been told Mum’s lack of movement and other things were just normal phases of recovery when in fact, she’d had a stroke. 

Despite their great love for their sister, my aunties had little financial resources themselves and they were forced to return interstate to work within a week of Cas’ surgery. Without any networks to support us, my choices were to put my 43-year-old mum in a state-funded nursing home or be her carer while studying full time. It had to be full time, otherwise I didn’t meet the minimum activity requirements to receive the student support payment from Centrelink (now known as Services Australia). Mum had no savings, no assets, no life or Total and Permanent Disability (TPD) insurance. My parents had separated a long time before and my dad, who had himself suffered a traumatic brain injury a couple of years prior, had none of these things either. He wasn’t even counted as a citizen ‘til ‘67. 

Our family had always been materially poor but emotionally rich. Seeing my mum not serve herself to make sure us kids had enough for at least one decent meal for the day, or hearing stories of my dad stealing sugar cubes from tea rooms just to have something in his belly were common, poignant and relatable. I felt a deep respect for my parents’ experiences, but also a heavy sense of responsibility to change things for us and both the First Nations and disability community. Especially since both my parents were now profoundly impacted.  

My whole life we had lived from week to week, sometimes day to day, so when I realised that Mum’s care needs and my study were becoming too much for me to handle, I started to panic. I was panicking because I knew that my only source of income was in jeopardy, because 19-year-old me was no longer able to meet all the demands being made of me. 

While Mum’s medical team always praised me for being a model daughter, they never offered any practical help, nor did the hospital or the social workers or the local community health services we navigated. 

I never doubted my love, value or worth to my family but despite all this, it was with great shame and trepidation that I entered my local Centrelink office to inform them that I could no longer continue being 19 and studying five days a week, while also caring for my profoundly disabled mum. I felt like I had failed everyone. 

I knew this meant that I would no longer be eligible for the student payment, but at the time I didn’t have the tools or knowledge to advocate and say "Hey, I should be financially supported as a carer". 

My confession to the Centrelink staff member was met with doubt. First question was something along the lines of “Are you sure/have you tried hard enough?” and then came “…Surely you have a parent or someone that can support you?”. I was asked repeatedly as they warned me I would "have to be cut off" from my only source of income. It was like a glitch in the matrix. With each different staff member who I relayed my circumstances to, no one could understand that neither of my parents, or anyone else in my extended family or network, was able to practically or financially support me. 

Despite my objections, my student payment was cut, leaving Mum and I to try and survive on her pension of just over $250 per week. I sat at the counter and sobbed, begging for help. I couldn’t leave. We paid $250 per week in rent alone.
Eventually, after a lot of hushed discussions between staff and meetings behind closed doors (all without me present), I was offered a ‘solution’. A loan, sort of like HECS but not HECS. A loan that I would need to repay if I ever made over $32k a year, and that would stay with me even if I filed for bankruptcy. I was told, reluctantly, that if I could really only study part time, I may be approved for a low interest loan, given to me as 52 weekly payments of $100.

I was young, alone, vulnerable and trying to seek help. I was reminded once again by the Centrelink staff member that it was this loan or no payments. Beggars can NOT be choosers, so I left having signed a loan agreement and trying to juggle both my responsibilities.

When the 52 payments stopped, we were no longer able to scrape by. I had no choice but to defer my studies and get any job I could. Poverty seemed like an insurmountable roadblock when trying to imagine the future. 

Mum has been gone over five years now, Dad too, and yet the loan still sits awaiting more payments. I am a disability pensioner though, so my total income remains less than $32k a year.

RENAY's Story

I met my GP Dr Bat* not long after I’d been diagnosed with ankylosing spondylitis and fibromyalgia (amongst other things). Prior to meeting them, I’d been forced to share my vulnerability, my story, my scar-ridden and trauma-filled body, as I was repeatedly put in the ‘too hard basket’ by other doctors.

One doctor looked at my medication list and before he said anything else in the consult, I was told “Well you know I won’t be able to prescribe those to you” – indicating the pain medications I’d been previously given. I’d continue the search for a doctor who might have an answer and be told no one there would see me. I was “too complex a case” or the doctors “would only be at that clinic for a few more months”. 

It wasn’t even the pain that was the worst of it. I grew to believe I was unworthy of care.

I have sat in so many consulting rooms and sobbed, literally begging for someone to help find out why I was in so much pain. Despite having several diagnoses of life-altering, degenerative autoimmune diseases, the evidence of them having significantly changed my body, I was told my issues would go away if I “just lost some weight”. I heard it so often I think that I gained another kilo every time I did.

Sometimes you can’t even get into the room with the doctor, because their staff make racist assumptions. On one occasion, I went to the emergency dental hospital where treatment is free if you’re Indigenous. “Do you have any proof of your Aboriginality?”, the staff member asked me at 7am with my face so swollen I couldn’t see out of my eye. I had been attending this hospital for proactive treatment and met with the Aboriginal Liaison Officer several times. It was quite clearly marked in their system that I am Aboriginal, the staff member just wanted their own burden of proof met.  

When the rules of healthcare are actually written for people with disability, especially Aboriginal and Torres Strait Islander people, the idea of ‘connection with your community’ is often emphasised. What community means is different for everyone, but when it’s used in a colonial setting, it becomes a buzzword – often followed by platitudes of assurance that connecting mob with each other is a good thing.

For anyone who hasn’t known that disconnection, yearning for your community becomes intangible. An esoteric and scarily expensive sounding exercise in what? Making people 'feel better'?

I can’t speak for everyone but for me, connection and community are the deep unseen layers, the foundations of what surrounds us, not the decorative overlays of temporary displays of cultural tolerance. Cupcakes and awareness days do nothing to help Susan from reception at the local healthcare clinic understand how it feels to be questioned and denied healthcare because of your race. 

I will never forget the day when, as a 13-year-old, I saw two of my younger cousins get swept out to sea by a rip current. I raced in after them, pulled them to safety and carried them to the clinic a couple hundred metres up the road to the Aboriginal controlled community health centre. When I got there soaked and exhausted, carrying two spluttering children, the triage nurse recognised us and called our family immediately. Thankfully my cousins were unharmed but even as a young teenager, I knew that this was a safe space where I would always be welcome. Connections like that need time and equitable access to become interwoven in your life, and improve your health and wellbeing.

When I had my first consultation with Dr Bat, I didn’t cry at all. From the beginning, I felt like I was actually being listened to. I think it was three or four visits in when I became brave enough to carefully utter those outrageously scary words: “Dr Bat, do you think I could get some pain relief?”. Followed by explaining all the valid reasons why I needed them. 

When they said yes, I almost fell off my chair! I began to trust that my physical and emotional treatment wouldn’t be about telling me what I need, but listening to and helping me to achieve as close to what I want and what I need. I did have to check that my light-headedness was from the incredible weight that was lifting and not an urgent medical event. 

For the next two years, every single time I left Dr Bat’s office after some kind of interaction with them, I cried with relief. Mostly I could make it back to the car but sometimes it was as soon as the consult room door was closed, the salty escapees would shoot down my face like an unruly fly. As the weight lifted, I was able to engage my love for creating and the arts again. I stopped feeling as trapped by the chronically ill parts of me and now I am very comfortable within my identity as a disabled person. I was navigating my intersections like a pro. With access to mobility aids and support I was able to actively participate in the arts community, and I felt a freedom I never had before.

Writer and disability activist Liel K. Bridgford once described intersectionality as being like the layers and pieces of a patchwork quilt. Each person’s experiences mimic the unique and weighted compilations of colourful pieces of woven textiles. Sometimes carefully chosen, sometimes made from scraps or whatever you can find, each with different benefits and detractions. Given my love of creating with textiles, it stuck with me as I thought about what my layers of privilege and marginalisation would look like.

I used that analogy to explain intersectionality at an event for International Day of People with Disability 2022 (IDPWD) which is celebrated globally on December 1st. Trying to adhere to non-disability-friendly timelines around work meant I had been pushing myself too much in the lead up to IDPWD, and I was very close to causing a flare. A flare is a term used to describe an increase in intensity and acuteness of symptoms, and the warning signs of one for me are a specific type of nausea, a peppery feeling in the throat, and gravity starts to feel like I’m now swimming through concrete. 

With a rest period appearing on the horizon, I ignored the ginormous red flags and just told myself I’d be fine. From as early as I could remember, my mother would call me arsey. Not as a comment on my body but to describe my constant pushing of boundaries. It was Arsey Renay that thought by planning a couple of weeks rest after this busy period, I would definitely avoid a flare. 

There was a succession of oppressively humid days, and more melted chocolate oozed from doors on our advent calendars. Anticipation was building, and I spent my time just trying to exist and meet our basic survival needs. Existing in pain, unable to get any relief from it or the heat, is exhausting although not uncommon for me. It means I’m not a morning person, no, not even during Christmas. When I woke up on December 24, sweating, with chills and just generally feeling like death warmed up, I just assumed it was more of the same.

I took a sip from my ritualistic first cuppa, it burnt like fire going down my throat, and my guts started rumbling immediately. It’s hard to know when something is really wrong with you when you experience the pain I do everyday, but my reaction to tea had me concerned.

My body temperature was almost 40 degrees, I was coughing so hard I was bringing up blood. I couldn’t keep anything down, my body even repelled water. The outside temperature was near 40 degrees also, time blurred and I lay writhing in bed in pain. Pain that fast became far above and beyond what I experience everyday. I kept down such little liquid that after 24 hours my partner started asking me to consider going to hospital. Knowing my experiences with the place, it was a very tentative suggestion, but a definite sign to me he was concerned. 

I wouldn’t say I’m reluctant to go to hospitals, it’s just I only go there if I think I’m going to die. Every time I concede I need help more than what I have at home and head into my local emergency department, I am utterly convinced I will not escape with my life.

This illness felt familiar too, much like Covid had felt when I contracted it earlier in the year. Testing, treatment, reporting and safety measures around Covid are almost non-existent now, and as I began to discover, accessing treatment is all dependent on having access to a PCR test. It’s your ability to endure the illness that determines whether you live. My partner Jay had spent hours digging online to confirm that current government policy meant I was eligible for anti-viral meds if I could just get a PCR test.

Jay contacted paid medical services, free ones, doctor on call apps, locum doctors, pharmacies, anyone who might be able to do a house call. We just needed to access a PCR to confirm that yes, this is Covid, here’s some antivirals, call us if you get worse.But it was Christmas Day so the one place that did tests “for a fee” was closed, and the free Covid testing clinics all had their funding years earlier, so they no longer existed. Everywhere else possible was closed for the holidays, so my only choice for help was to go to the ER. 

It felt superfluous to go. Like going to the dairy farm directly for milk instead of just grabbing it from the corner store. Surely, I could just get some antiviral meds and maybe even a bag of fluids at a local clinic? 

So I rolled the dice. I chose nothing. This time I survived.

Another 48 hours passed and my symptoms were not getting any better. My children have grown up with a disabled, chronically ill mum, so when they started to become concerned for me, I hesitantly agreed to attend an Urgent Care Centre (UCC). I was relieved we didn’t need to take the drastic step of going to the emergency room (ha ha! I survived), and this recently created UCC seemed exactly for people in situations like mine, (just not on public holidays).

When the hottest part of the day had passed, Jay bundled me into the car and sat with our children waiting outside while I presented to the triage nurse at the UCC. My brain was spinning, body aching, and I was retching as I relayed my experiences up until this point. 

Eventually I am led to a small curtained bay and told to lay down on the much-too-small-for-me bed while I wait for the doctor. I can’t relax at all and lay awkwardly on the cold plastic, although it’s a welcome relief from my un-air conditioned home. I can hear people talking as the staff room door is open and just a few metres away. They’re discussing some local children (who they identify by first and last name, school they attend and place of parents’ employment) and profess how awfully spoilt they are. I only realise the nurse is standing next to me when she asks the question, you know the one: “On a scale of one to ten, can you rate your pain for me?”. 

Eight, I respond, and her eyes say everything her vocal chords don’t. Her posture softens as she reads my notes and measures my body’s functioning. I’m surprised that she doesn’t recognise that people who deal with chronic pain don’t need to be wailing and flailing to be hurting.

I confirm with her that yes, I am still taking the immune suppressing drugs, yes I am Indigenous, and at this moment the doctor enters the bay. I recgonise his voice from earlier and his attitude from the many interactions I have had with medical professionals.

“It seems like you’ve got a lot on your plate, and you’re here because you feel you’ve got Covid?” I am asked, though it seems like more of a statement. We begin to discuss the medications I take and his fingers stop at the section of the form where I’ve written my diagnoses. He stops speaking and picks up my fingers, carefully studying my nails and the half peeled polish that has been on there for a few weeks now.

“Your fingernails are painted, how am I supposed to tell?” he asks. He taps on the form and says, “It says you’re being treated for psoriatic arthritis but your fingernails are painted, how am I supposed to confirm that diagnosis?”. I ended up being sent home with two paracetamol, having kept down 200ml of water.

I was completely spent. I had no reserves left, using what I had to just get in the door, I couldn’t fight for what I needed. After almost a lifetime of being gaslit and overlooked, a victim of ableist, racist and sexist medical policy, the last couple of years being treated by an amazing team of medical professionals has made healthcare so accessible to me. I’d not even noticed the layers of my intersectional quilt lighten. At that moment, without them to advocate for me within the system, I was just another Blak, disabled woman and doomed to carry the weight of that forever. 

*Name has been changed.

BIG's Story

I gave birth for the first time late in my 23rd summer, to Big. A child with eyelashes like feathers and the sweetest heart of anyone I’ve ever known, born on the last day of a long heatwave. I sweltered through the long heat waves, complained about swollen ankles, but mine was an otherwise unremarkable pregnancy supported by local midwives from a birth centre just a few minutes away from where we lived in the Dandenong Ranges. My partner Jay and I had just moved there after some time in inner city Melbourne and found the proximity to the natural world comforting. Life was good, there was just one thing missing for me, I was yearning for more connection with other First Nations people. 

I had been separated from my own mob as a pre-teen but before that, I had spent a lot of time with my community at places like the local drop-in clinic or neighbourhood house, so I felt confident that there’d be many chances after Big was born to meet some other Indigenous parents. I didn’t know it at the time but those places that had facilitated my cultural connection throughout my childhood were local ACCHOs (Aboriginal Community Controlled Health Organisations).

While they were called Health Organisations, these places were never sterile, overwhelming and distressing for me in the way, non-mob health services were. No one ever asked if I “had my paperwork”, or demand I provide an ID card to prove my Aboriginality. The medical practitioners at ACCHOs knew why I might need to have my cousin with me for an appointment, or when our community had certain needs and special times. The staff there knew why being informed, aware and supportive of First Nations’ specific circumstances was of upmost importance.

So when I found out I was pregnant, I couldn’t help but think about the countless number of matriarchs who had birthed before me in sub-optimal circumstances. I was saddened thinking about their lack of access to culturally vital services during this important time in their lives. Inevitably my mind considered my risk of becoming another statistic. My risk of also suffering through the severe and ongoing trauma caused by continued colonisation, and its racist and coercive health and government policy. I had seen personally how these archaic approaches to healthcare, that were so embedded in our medical practices, imparted a specific kind of trauma to the majority of Indigenous people who gave birth. 

After a series of medically complex events, Big came into the world dangerously unwell and within minutes of their birth, the midwife called a paediatrician to authorise Big being whisked away to the Special Care Nursery (SCU). Unbeknownst to me, Big was so unwell they were transferred to the NICU (Neonatal Intensive Care Unit) of a different hospital 30 minutes away. Jay, although concerned about my condition after such a risky delivery, initially tried to accompany Big along to the SCU but we were told they’d “let us know when visitors were allowed”.  

An immeasurable amount of time passed, I didn’t know where my baby had been taken, how unwell they were, if they were in distress or when I could see them. The midwife on duty just kept telling me to relax and get some sleep while I could. Jay and my mum were forced to leave when visiting hours were over and I was left alone, in a room full of new parents gushing over their newborn babies.

I’m not sure if any staff member I interacted with was aware of just how distressed I became as the hours went on. If they did, they certainly didn’t do anything about it. Swirling through my head were the horrific stories of Indigenous people and families that had come before me and been victims of heinous human rights abuses in situations like these. I was sobbing, and crying as I lay on the thin, cold bed. 

Stories of people having their babies ripped from their arms moments after giving birth. Being told that their baby had died, when in fact they had been given to someone the authorities deemed more worthy.  The knowledge of my own family’s own irreparably damaged history due to the impacts of the Stolen Generations. My fear only grew as the time went on.  

I thought of my own father, as he sat in the waiting room of the maternity ward while I was born, being told by the Sisters (nuns) that his wife was DEFINITELY not there. "…I’m sure you’ve got it wrong. Your wife is not here", they said to him, as he asked repeatedly to be taken to see her and his child. It wasn’t until after my mum had delivered me and made the trek to the nursery that she spotted my father asleep in the waiting room and demanded to know where he had been. In the next part of the story, Mum always said she’d given the staff a mouthful for being racist, horrible people, and not checking with her or letting the father of her child into her room. It didn’t seem to concern anyone (but me) that being separated from my baby and my family, or even just being the only First Nations person on the ward, might be distressing from not only a cultural, but a personal point of view also. It didn’t even seem to be acknowledged that my interactions with the medical system face many different barriers to safely accessing treatment.

I had ticked the box on the form, I had indicated that I was a part of that group that faced so many layers of marginalisation. I had said "Yes, I am an Aboriginal person" (which was such an important part of my being), but it just didn’t seem to matter. The hours passed; the sun rose again but with less ferocity than the day before. My legs had begun to function safely again sometime during the night. When Jay arrived, I burst into tears and he immediately set off to get some answers on what had been happening with Big, while I demanded to speak with the Nursing Unit Manager (NUM). 

It was then, over 12 hours later, that I was advised that my child had in fact been transferred to another hospital. The NUM told me that I hadn’t been offered transport with Big, as I was still too unwell to travel (caesareans after all are major abdominal surgery). I was advised that the children’s hospital had no beds or medical team to care for parents who were unwell after they delivered a sick child.  So, I was given the choice to stay separated from my critically ill child and remain on the maternity ward in a hospital 30 minutes away or be discharged against medical advice. 

At the time, all that mattered to me was seeing my baby again, and so that’s what I chose. I refused to allow our family to be separated and nobody here seemed to care about me at all anyway. So I got in a taxi and made my way to my baby.

Eventually, sometime around Anzac Day, Big was discharged as an outpatient. I’ll never forget the mixture of fear and excitement at leaving the hospital car park with my child in the backseat sleeping peacefully. We turned the car radio on the ride home and heard the host speaking about those we had lost to the World Wars. I once again found myself thinking of all those Indigenous women whose children never returned to them. 
Three people. Three stories. Three generations of trauma trying to survive within the Australian medical system.

1. Cas

1. Cas

1. Cas

1. Cas

1. Cas

Tap

2. Renay

2. Renay

2. Renay

2. Renay

2. Renay

3. Big

3. Big

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Please be aware that these written materials and audio recordings contain the names of Aboriginal and/or Torres Strait Islander people who have died.

Types of medical biases

A guide for understanding how medical biases effect our healthcare

Read more here

We all deserve equal access to healthcare.

But our ability to access equal healthcare is impacted by a number different factors.

How quickly we can access the care we need, the quality and accuracy of our treatment, how pleasant an experience it is for us – these factors are always at the mercy of the biases we are subjected to the minute we walk into any healthcare centre.

So what do we mean by 'bias'?

Flip

EXPLICIT Bias

On an interpersonal level, any person may hold preconceived judgements of you based on your appearance, behaviours and choices.

This is what we call ‘explicit bias’ – assumptions we make because of our own personal belief systems. We are generally aware of these biases and behave on them intentionally. 

As medical professionals are also people, they can also hold judgements which impact how they treat you when you attempt to access healthcare. If your doctor holds prejudiced views, you may receive a different kind of treatment in attitude and care. 
On an interpersonal level, any person may hold preconceived judgements of you based on your appearance, behaviours and choices.

This is what we call ‘explicit bias’ – assumptions we make because of our own personal belief systems. We are generally aware of these biases and behave on them intentionally. 

As medical professionals are also people, they can also hold judgements which impact how they treat you when you attempt to access healthcare. If your doctor holds prejudiced views, you may receive a different kind of treatment in attitude and care.

Implicit Bias

Whether an individual person is conscious of holding any explicit bias or not, we still exist in a world filled with implicit bias. 

These attitudes and beliefs have been baked into our studies, policies and procedures by generations of decision makers. And since historically, these decision makers have been overwhelmingly cis, straight, white males, what we end up with are systems that favour people like this.

Regardless of whether we encounter individual people with personal biases in our daily lives, we will still feel the consequences of these systems.
Whether an individual person is conscious of holding any explicit bias or not, we still exist in a world filled with implicit bias. 

These attitudes and beliefs have been baked into our studies, policies and procedures by generations of decision makers. And since historically, these decision makers have been overwhelmingly cis, straight, white males, what we end up with are systems that favour people like them.

Regardless of whether we encounter individual people with personal biases in our daily lives, we will still feel the consequences of these systems.

What can medical bias look like?

Healthcare, being one of our largest and oldest systems, is deeply entrenched in implicit bias which means that even if you are lucky enough to find a doctor that doesn’t hold prejudiced views, you may still not receive equal access to healthcare since we exist in a system that hasn’t always accounted for different types of communities and identities. 

Combined together, the same explicit and implicit biases commonly seen everywhere also manifests in our healthcare as 'medical bias'.

The consequences, of course, are dire. Marginalised groups of people have historically and continue to experience poorer treatment, inaccurate diagnoses, delayed attention, additional stress, increased avoidance and worsened health conditions.

What are the consequences of medical bias?

What are the consequences of medical bias?

GENDER BIAS

As a group, women, femme-identifying and femme-presenting folk have experienced continued dismissals, misdiagnosis and mistreatment when attempting to access medical treatment.
Gender bias can manifest in many ways, but some examples are: 
Gender Disparity In Analgesic Treatment of Emergency Department Patients with Acute Abdominal Pain - Esther H Chen et al. (Academic Emergency Medicine vol. 15,5; 2008)
Despite reporting longer, more severe and more frequent pain, women wait 16 minutes longer than men to receive pain relief and when they do, it is likely to be a less aggressive relief medication1.
The Missed Disease? Endometriosis as an Example of 'Undone Science' - Nicky Hudson (Reproductive Biomedicine & Society Online vol. 14; 2021)
Ten percent of women in the world have endometriosis, but its diagnosis usually takes around 7.5 years to reach due to being largely ignored in government policy and research funding globally2.
Why Doctors Still Misunderstand Heart Disease in Women - Vidhi Doshi (The Atlantic, 26 October 2015)
Two defining heart disease studies in history – one linking high cholesterol to heart disease, and another linking aspirin with reducing the risk of heart attacks – each involved exactly zero women3. As a result, heart disease is the leading cause of death and chronic health conditions for women across the world.

LGBTQIA+ BIAS

Considering ‘homosexuality’ was still listed in the Disability and Statistical Manual of Mental Disorders (DSM) as a mental health condition until 19734, it’s no surprise that LGBTQIA+ bias is largely prevalent in our medical systems.
Baked-in bias within (and outside of) the medical system has led to worsened health conditions for the LGBTQIA+ community, most notably the trans community:
Do Contact and Empathy Mitigate Bias Against Gay and Lesbian People Among Heterosexual First-Year Medical Students? A Report from the Medical Student CHANGE Study - Sara E Burke et al. (Academic Medicine: Journal of the Association of American Medical Colleges vol. 90,5; 2015)
80% of heterosexual first-year medical students in 2010 still demonstrated more negative evaluations of lesbian and gay people compared to heterosexual people5.
Why L.G.B.T.Q. Adults are More Vulnerable to Heart Disease - Dani Blum (The New York Times, 29 June 2022)
The constant threat of discrimination or harassment, as well as the chronic stress associated with the act of coming out (often repeatedly), means that LGBTQIA+ adults are more likely to have worse heart health6.
High Costs, Long Waits: Trans Healthcare Barriers Across NZ Remain - Susan Strongman & Murphy (Radio New Zealand, 26 November 2020)
Formal diagnosis of ‘gender dysphoria’ before gender affirming healthcare is still commonplace7, further treating trans identities as abnormal or as a mental illness.
Discrimination in the United States: Experiences of Lesbian, Gay, Bisexual, Transgender, and Queer Americans - Logan S Casey et al. (Health Services Research vol. 54, 2019)
Trans folk with disability are much more likely to put off seeking healthcare due to higher levels of discrimination, leading to worsening health outcomes in the long-term8

Racial BIAS

People of Colour (PoC) have been and continue to be excluded and disenfranchised within Western medical systems.
The lack of ethnic diversity in clinical research historically and still today remains one of the main ways implicit bias manifests in our healthcare system:
Clinical Trials and the Ongoing Battle with Racial Bias - GlobalData Healthcare (Clinical Trials Arena, 11 October 2021)
PoC had higher death rates than their white counterparts in the UK, but despite this, only 5.8% of vaccine study participants were from an ethnic minority9.
Clinical Trials Seek to Fix Their Lack of Racial Mix - Patrick Boyle (Association of American Medical Colleges, 20 August 2021)
Black patients account for just 5% of clinical trial participants in the US, while white patients make up the vast majority10.
Healthcare Access for Refugee Women with Limited Literacy: Layers of Disadvantage - Annette Floyd & Dikaios Sakellariou (International Journal for Equity in Health vol. 16,1; 2017)
Refugees and recent immigrants who face language barriers when accessing medical care are put in a position that results in delayed care or less compliance11. This further increases health disparities outside of additional socio-economic factors.

Indigenous BIAS

Three in four Australians hold a negative implicit bias against First Nations people12, and this historic racism is deeply entrenched into our medical systems too.
The continued impact of colonisation has resulted in a gap of approximately 15 years in life expectancy between Indigenous & non-Indigenous Australians13, which we refer to below as ‘The Gap’.
Australian Burden of Disease Study Impact and Causes of Illness and Death in Aboriginal and Torres Strait Islander People 2018 - Australian Institute of Health and Welfare
Australian Burden of Disease Study Impact and Causes of Illness and Death in Aboriginal and Torres Strait Islander People 2018 - Australian Institute of Health and Welfare
Indigenous Australians are 2.3 times more likely to be living with illness or injury, or dying prematurely due to a health condition14. This is called the ‘Burden of Disease’, rates of which increase with socioeconomic disadvantage.
Determinants of Health for Indigenous Australians - Australian Institute of Health and Welfare (7 July 2022)
Determinants of Health for Indigenous Australians - Australian Institute of Health and Welfare (7 July 2022)
While only 19% of The Gap is found to be due to lifestyle factors (alcohol consumption, smoking etc)15, the majority of public health efforts places focus on ‘personal responsibility’16 which further perpetuates prejudice against First Nations people in our health systems.
Healthcare Access for Refugee Women with Limited Literacy: Layers of Disadvantage - Annette Floyd & Dikaios Sakellariou (International Journal for Equity in Health vol. 16,1; 2017)
47% of The Gap is actually due to the impact of cultural and historical factors on health, such as access to culturally safe health services. Current healthcare is perceived as demeaning, disempowering, racist and culturally unsafe by Indigenous patients. As a result, Indigenous patients are self-discharged against medical advice over five times the rate of non-Indigenous Australians17.
Three in Four People Have an Implicit Negative Bias Against Indigenous Australians, Study Finds - Kate Midena (ABC News, 9 June 2020)
*Three in four Australians

Weight BIAS

Anti-fat bias is prominent among medical workers. This explicitly changes how they provide care and treatment to people they view as overweight or obese.
Only looking at a person’s weight to assess health is reductive, and this historic fixation on fatness has led to countless reports of medical neglect.
Is B.M.I a Scam? - Alice Callahan (The New York Times, 18 May 2021)
The current iteration of BMI is largely based on a 1972 study of 7,000 mostly middle-aged white me18, yet it is still an internationally recognised way to measure the health status of any person.
Is B.M.I a Scam? - Alice Callahan (The New York Times, 18 May 2021)
Almost 50% of those classified as overweight and 25% of those classified as obese by the BMI were found to be healthy through other more holistic measures such as blood pressure, cholesterol and glucose levels18.
Impact of Weight Bias and Stigma on Quality of Care and Outcomes for Patients with Obesity - SM Phelan et al. (Obesity Reviews: An Official Journal of the International Association for the Study of Obesity vol. 16,4; 2015)
Healthcare professionals are prone to attribute symptoms to obesity. Those who are seen as ‘obese’ are more likely to receive lifestyle change recommendations rather than medication compared to ‘normal weight’ patients with the same symptoms19.
1. Is B.M.I a Scam? - Alice Callahan (The New York Times, 18 May 2021)
2. Impact of Weight Bias and Stigma on Quality of Care and Outcomes for Patients with Obesity - SM Phelan et al. (Obesity Reviews: An Official Journal of the International Association for the Study of Obesity vol. 16,4; 2015)

GENDER BIAS

As a group, women, femme-identifying and femme-presenting folk have experienced continued dismissals, misdiagnosis and mistreatment when attempting to access medical treatment.
Types of Medical Bias
Flip

GENDER BIAS

Gender bias can manifest in many ways, but some examples are: 
Gender Disparity In Analgesic Treatment of Emergency Department Patients with Acute Abdominal Pain - Esther H Chen et al. (Academic Emergency Medicine vol. 15,5; 2008)
Despite reporting longer, more severe and more frequent pain, women wait 16 minutes longer than men to receive pain relief and when they do, it is likely to be a less aggressive relief medication1.
The Missed Disease? Endometriosis as an Example of 'Undone Science' - Nicky Hudson (Reproductive Biomedicine & Society Online vol. 14; 2021)
Ten percent of women in the world have endometriosis, but its diagnosis usually takes around 7.5 years to reach due to being largely ignored in government policy and research funding globally2.
Why Doctors Still Misunderstand Heart Disease in Women - Vidhi Doshi (The Atlantic, 26 October 2015)
Two defining heart disease studies in history – one linking high cholesterol to heart disease, and another linking aspirin with reducing the risk of heart attacks – each involved exactly zero women3. As a result, heart disease is the leading cause of death and chronic health conditions for women across the world.
Types of Medical Bias

LGBTQIA+ BIAS

Considering ‘homosexuality’ was still listed in the Disability and Statistical Manual of Mental Disorders (DSM) as a mental health condition until 19734, it’s no surprise that LGBTQIA+ bias is largely prevalent in our medical systems.
Types of Medical Bias

LGBTQIA+ BIAS

Baked-in bias within (and outside of) the medical system has led to worsened health conditions for the LGBTQIA+ community, most notably the trans community:
Do Contact and Empathy Mitigate Bias Against Gay and Lesbian People Among Heterosexual First-Year Medical Students? A Report from the Medical Student CHANGE Study - Sara E Burke et al. (Academic Medicine: Journal of the Association of American Medical Colleges vol. 90,5; 2015)
80% of heterosexual first-year medical students in 2010 still demonstrated more negative evaluations of lesbian and gay people compared to heterosexual people5.
Why L.G.B.T.Q. Adults are More Vulnerable to Heart Disease - Dani Blum (The New York Times, 29 June 2022)
The constant threat of discrimination or harassment, as well as the chronic stress associated with the act of coming out (often repeatedly), means that LGBTQIA+ adults are more likely to have worse heart health6.
High Costs, Long Waits: Trans Healthcare Barriers Across NZ Remain - Susan Strongman & Murphy (Radio New Zealand, 26 November 2020)
Formal diagnosis of ‘gender dysphoria’ before gender affirming healthcare is still commonplace7, further treating trans identities as abnormal or as a mental illness.
Discrimination in the United States: Experiences of Lesbian, Gay, Bisexual, Transgender, and Queer Americans - Logan S Casey et al. (Health Services Research vol. 54, 2019)
Trans folk with disability are much more likely to put off seeking healthcare due to higher levels of discrimination, leading to worsening health outcomes in the long-term8
Types of Medical Bias

Racial BIAS

People of Colour (PoC) have been and continue to be excluded and disenfranchised within Western medical systems.
Types of Medical Bias

Racial BIAS

The lack of ethnic diversity in clinical research historically and still today remains one of the main ways implicit bias manifests in our healthcare system:
Clinical Trials and the Ongoing Battle with Racial Bias - GlobalData Healthcare (Clinical Trials Arena, 11 October 2021)
PoC had higher death rates than their white counterparts in the UK, but despite this, only 5.8% of vaccine study participants were from an ethnic minority9.
Clinical Trials Seek to Fix Their Lack of Racial Mix - Patrick Boyle (Association of American Medical Colleges, 20 August 2021)
Black patients account for just 5% of clinical trial participants in the US, while white patients make up the vast majority10.
Healthcare Access for Refugee Women with Limited Literacy: Layers of Disadvantage - Annette Floyd & Dikaios Sakellariou (International Journal for Equity in Health vol. 16,1; 2017)
Refugees and recent immigrants who face language barriers when accessing medical care are put in a position that results in delayed care or less compliance11. This further increases health disparities outside of additional socio-economic factors.
Types of Medical Bias

Indigenous BIAS

Three in four Australians hold a negative implicit bias against First Nations people12, and this historic racism is deeply entrenched into our medical systems too.
Types of Medical Bias

Indigenous BIAS

The continued impact of colonisation has resulted in a gap of approximately 15 years in life expectancy between Indigenous & non-Indigenous Australians13, which we refer to below as ‘The Gap’.
Australian Burden of Disease Study Impact and Causes of Illness and Death in Aboriginal and Torres Strait Islander People 2018 - Australian Institute of Health and Welfare
Australian Burden of Disease Study Impact and Causes of Illness and Death in Aboriginal and Torres Strait Islander People 2018 - Australian Institute of Health and Welfare
Indigenous Australians are 2.3 times more likely to be living with illness or injury, or dying prematurely due to a health condition14. This is called the ‘Burden of Disease’, rates of which increase with socioeconomic disadvantage.
Determinants of Health for Indigenous Australians - Australian Institute of Health and Welfare (7 July 2022)
Determinants of Health for Indigenous Australians - Australian Institute of Health and Welfare (7 July 2022)
While only 19% of The Gap is found to be due to lifestyle factors (alcohol consumption, smoking etc)15, the majority of public health efforts places focus on ‘personal responsibility’16 which further perpetuates prejudice against First Nations people in our health systems.
Healthcare Access for Refugee Women with Limited Literacy: Layers of Disadvantage - Annette Floyd & Dikaios Sakellariou (International Journal for Equity in Health vol. 16,1; 2017)
47% of The Gap is actually due to the impact of cultural and historical factors on health, such as access to culturally safe health services. Current healthcare is perceived as demeaning, disempowering, racist and culturally unsafe by Indigenous patients. As a result, Indigenous patients are self-discharged against medical advice over five times the rate of non-Indigenous Australians17.
Three in Four People Have an Implicit Negative Bias Against Indigenous Australians, Study Finds - Kate Midena (ABC News, 9 June 2020)
Types of Medical Bias

Weight BIAS

Anti-fat bias is prominent among medical workers. This explicitly changes how they provide care and treatment to people they view as overweight or obese.
Types of Medical Bias

Weight BIAS

Only looking at a person’s weight to assess health is reductive, and this historic fixation on fatness has led to countless reports of medical neglect.
Is B.M.I a Scam? - Alice Callahan (The New York Times, 18 May 2021)
The current iteration of BMI is largely based on a 1972 study of 7,000 mostly middle-aged white me18, yet it is still an internationally recognised way to measure the health status of any person.
Is B.M.I a Scam? - Alice Callahan (The New York Times, 18 May 2021)
Almost 50% of those classified as overweight and 25% of those classified as obese by the BMI were found to be healthy through other more holistic measures such as blood pressure, cholesterol and glucose levels18.
Impact of Weight Bias and Stigma on Quality of Care and Outcomes for Patients with Obesity - SM Phelan et al. (Obesity Reviews: An Official Journal of the International Association for the Study of Obesity vol. 16,4; 2015)
Healthcare professionals are prone to attribute symptoms to obesity. Those who are seen as ‘obese’ are more likely to receive lifestyle change recommendations rather than medication compared to ‘normal weight’ patients with the same symptoms19.
Types of Medical Bias

What can we do about it?

We all have a responsibility to unlearn the biases we have on an individual level. But beyond that, we must recognise the consequences systemic bias has on marginalised people, especially those who are susceptible to more than one bias.

The better we can understand this, the more empathetic we can be to others who may be navigating a very different medical system to the one we have encountered ourselves. 

Medical systems such as the one Julia Bak describes in We can hold two (competing) truths at once, or the one navigated by Renay Barker-Mulholland and her family in The weight of the medical system.

References

1. Gender Disparity In Analgesic Treatment of Emergency Department Patients with Acute Abdominal Pain - Esther H Chen et al. (Academic Emergency Medicine vol. 15,5; 2008)

2. The Missed Disease? Endometriosis as an Example of 'Undone Science' - Nicky Hudson (Reproductive Biomedicine & Society Online vol. 14; 2021)

3. Why Doctors Still Misunderstand Heart Disease in Women - Vidhi Doshi (The Atlantic, 26 October 2015)

4. How LGBTQ+ Activists Got “Homosexuality” out of the DSM – Ray Levy Uyeda (JStor Daily, 26 May 2021)

5. Do Contact and Empathy Mitigate Bias Against Gay and Lesbian People Among Heterosexual First-Year Medical Students? A Report from the Medical Student CHANGE Study - Sara E Burke et al. (Academic Medicine: Journal of the Association of American Medical Colleges vol. 90,5; 2015)

6. Why L.G.B.T.Q. Adults are More Vulnerable to Heart Disease - Dani Blum (The New York Times, 29 June 2022)

7. High Costs, Long Waits: Trans Healthcare Barriers Across NZ Remain - Susan Strongman & Murphy (Radio New Zealand, 26 November 2020)

8. Discrimination in the United States: Experiences of Lesbian, Gay, Bisexual, Transgender, and Queer Americans - Logan S Casey et al. (Health Services Research vol. 54, 2019)

9. Clinical Trials and the Ongoing Battle with Racial Bias - GlobalData Healthcare (Clinical Trials Arena, 11 October 2021)

10. Clinical Trials Seek to Fix Their Lack of Racial Mix - Patrick Boyle (Association of American Medical Colleges, 20 August 2021)

11. Healthcare Access for Refugee Women with Limited Literacy: Layers of Disadvantage - Annette Floyd & Dikaios Sakellariou (International Journal for Equity in Health vol. 16,1; 2017)

12. Three in Four People Have an Implicit Negative Bias Against Indigenous Australians, Study Finds - Kate Midena (ABC News, 9 June 2020) 

13. Australian Burden of Disease Study Impact and Causes of Illness and Death in Aboriginal and Torres Strait Islander People 2018 - Australian Institute of Health and Welfare

14. Australian Burden of Disease Study Impact and Causes of Illness and Death in Aboriginal and Torres Strait Islander People 2018 - Australian Institute of Health and Welfare

15. Determinants of Health for Indigenous Australians - Australian Institute of Health and Welfare (7 July 2022)

16. Inequalities in the Social Determinants of Health of Aboriginal and Torres Strait Islander People: a Cross-sectional Population-based Study in the Australian State of Victoria - Alison Markwick et al. (International Journal for Equity in Health vol. 13, 20140 

17. Determinants of Health for Indigenous Australians - Australian Institute of Health and Welfare (7 July 2022)

18. Is B.M.I a Scam? - Alice Callahan (The New York Times, 18 May 2021)

19. Impact of Weight Bias and Stigma on Quality of Care and Outcomes for Patients with Obesity - SM Phelan et al. (Obesity Reviews: An Official Journal of the International Association for the Study of Obesity vol. 16,4; 2015)

Alternative ways of living

The typical Australian home is not built with different abilities in mind. The same can be said for the typical Australian household structure that only rewards the individual family unit. Compounded with the current affordable housing crisis, it’s people with disability and chronic illness who are struggling most to access the type of home they need to live and thrive. 

So instead, Emilia and Nory have looked to technology, community and creativity in building for themselves alternative ways of living. We were honoured to be invited into their spaces to see and hear it for ourselves. 

"Sometimes, I get stir crazy when I can't leave at all, like when I'm bedridden... I think when you spend a lot of time at home, it's good to have different areas to sit and relax."

A photo of Emilia and their partner sitting on their couch
A photo of Emilia sitting at their desk
A photo of Emilia and their partner lying on their bed
A photo of Emilia sitting on their couch
A photo of Emilia and their partner lying on their bed. Their dog can be seen lying on the floor in front of them
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Emilia Schnall

Emilia Schnall is a musician based in Naarm. Her sharehouse is set up more like a family home, full of care and space for everyone’s needs.

S: Who do you live with and why does it work for you?

E: I live in a sharehouse with my partner and two close friends. It’s very comfortable and we’ve never had any kind of household problems. I think because all of the girls have some sort of health issue, we’re all very understanding if dishes have gone unwashed or mess builds up. It’s a very understanding household.

S: Do you allocate specific areas for rest, or gathering, or work?

E: This living room is definitely for when we have friends over. Which we do often luckily, because we’re so central to the city and the space is big enough. It’s become kind of like our friends’ kind of hub because it’s big.

S: What’s something great about having this space?

E: There’s so many areas, you’re never getting in someone’s hair. I mean, sometimes I get stir crazy when I can’t leave at all, like when I’m bedridden. But if I’m able to move around, I’m perfectly happy to spend like 90% of my time here. I think when you spend a lot of time at home, it’s good to have different areas to sit and relax. And I mean, it’s not a luxury or privilege everyone gets.

S: What are some items around the house that really help you?

E: We sometimes write things on our whiteboard, like appointments or something we might need help with. We’ve got our cleaning station in this communal area so it’s easy for us all to know where masks and Covid tests are.

One of our criteria when finding a house was having a bath. When you’re sore, that’s really important and this one luckily already had a rail. We also have a shower chair in the bathroom.

We’re going to get a dishwasher, which will make our lives easier because dishes are really hard. Like, I actually can’t do the dishes because I’ve got like three million problems with my hands.

"My watch also has a body battery function. There are achievements and rewards. Well, I don't get rewarded. The reward is hydration, the reward is clear skin." 

A photo of Nory sitting at their desk
A photo of Nory smiling while holding their bike
A photo of Nory sitting opposite their mirror
A photo of Nory sitting on their bed
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Nory Gretz

Nory Gretz is a multi-disciplinary artist and creative based in Naarm. Her home is a workspace, art studio and most importantly, space of rest all in one, transforming as needed.

S: What is your space like and why does it work for you?

N: I find it takes me no more than 20 minutes to tidy – which is great for my capacity. I can vacuum the whole thing in six minutes. It’s pretty good in that way for me as a physically disabled person.

Furthermore, if I’m flaring, it takes me no more than four steps to reach my kitchen and no more than eight to get to my bathroom. I didn’t have to do too much to it to meet my access needs. It’s not much, but it’s a space to call mine and a space where I feel safe.

S: How have you set up your space for rest and work?

N: A very big thing is putting my desk in a way where I don’t see my bed. My bed is for stuff like watching TV or hanging out, because that’s something that’s restful. I don’t do non-restful things in bed unless I need to but then I have my own routine with that as well. I have a very strict sleep hygiene routine. I stop working at 6pm, take my meds at 7pm and eat, then at 9pm the smart lights switch, which tells me to shower. 

S: What are some items you own that really help you?

N: So my bike, it’s like a secret mobility aid. I will need a knee replacement pretty soon, and I basically have to keep my muscles moving and strong, and manage my pain until that happens. I find that walking for 10 minutes is actually a bitch and so the bike is great. You can pedal if you want to exercise but it’s also got a little motor so you don’t need to. It’s like a little, light motorbike. So that’s my main mode of transportation now. 

S: What about some items around the house?

N: I love smart technology. I have three small lights and honestly, they do everything for me in terms of actually making my place feel different because obviously, I’m living in the same room as my fridge and my dishwasher and stuff. So, they’re automated to turn on, change or dim so I’m able to visually transform my space from a work space to a rest space. 

My phone does it too actually. It goes black and white, but still lets me use my apps, or it closes all my apps. Honestly it keeps my brain so happy because I’m autistic and ADHD as well. So these set structures are really helpful for my brain. 

My watch also has a body battery function. Sometimes seeing your body like a battery that’s running out is really helpful. I’ve been adequately hydrated for 105 days now. There are achievements and rewards. Well, I don’t get rewarded. The reward is hydration, the reward is clear skin. 

Nory Gretz

Nory Gretz is a multi-disciplinary artist and creative based in Naarm. Her home is a workspace, art studio and most importantly, space of rest all in one, transforming as needed.

S: What is your space like and why does it work for you?

N: I find it takes me no more than 20 minutes to tidy – which is great for my capacity. I can vacuum the whole thing in six minutes. It’s pretty good in that way for me as a physically disabled person.

Furthermore, if I’m flaring, it takes me no more than four steps to reach my kitchen and no more than eight to get to my bathroom. I didn’t have to do too much to it to meet my access needs. It’s not much, but it’s a space to call mine and a space where I feel safe.

S: How have you set up your space for rest and work?

N: A very big thing is putting my desk in a way where I don’t see my bed. My bed is for stuff like watching TV or hanging out, because that’s something that’s restful. I don’t do non-restful things in bed unless I need to but then I have my own routine with that as well. I have a very strict sleep hygiene routine. I stop working at 6pm, take my meds at 7pm and eat, then at 9pm the smart lights switch, which tells me to shower. 

S: What are some items you own that really help you?

N: So my bike, it’s like a secret mobility aid. I will need a knee replacement pretty soon, and I basically have to keep my muscles moving and strong, and manage my pain until that happens. I find that walking for 10 minutes is actually a bitch and so the bike is great. You can pedal if you want to exercise but it’s also got a little motor so you don’t need to. It’s like a little, light motorbike. So that’s my main mode of transportation now. 

S: What about some items around the house?

N: I love smart technology. I have three small lights and honestly, they do everything for me in terms of actually making my place feel different because obviously, I’m living in the same room as my fridge and my dishwasher and stuff. So, they’re automated to turn on, change or dim so I’m able to visually transform my space from a work space to a rest space. 

My phone does it too actually. It goes black and white, but still lets me use my apps, or it closes all my apps. Honestly it keeps my brain so happy because I’m autistic and ADHD as well. So these set structures are really helpful for my brain. 

My watch also has a body battery function. Sometimes seeing your body like a battery that’s running out is really helpful. I’ve been adequately hydrated for 105 days now. There are achievements and rewards. Well, I don’t get rewarded. The reward is hydration, the reward is clear skin. 
A photo of Nory sitting at their desk
A photo of Nory smiling while holding their bike
A photo of Nory sitting opposite their mirror
A photo of Nory sitting on their bed
An arrow pointing to the left, indicating 'previous'
An arrow pointing to the right, indicating 'next'
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Emilia Schnall

More smiling faces means more genuine confidence, pure compassion and honest connection. TWICE is spreading the power of a smile to every single person on the planet.
S: How long have you guys been in this particular house?

E: Um, in feb, it was a year so it's been a little over here.

S: It’s so well set up, after just a year of living here.

E: Yeah, look, I spend a lot of time at home. So I get a little bit like in decoration ways.

S: Was it like the group that you're living with, have you lived together before and you found this place or came together for this place?

E: Um, so we all came together. Me and Max had never lived together before.

S: How long have you guys been in this particular house?

E: Um, in feb, it was a year so it's been a little over here.

S: It’s so well set up, after just a year of living here.

E: Yeah, look, I spend a lot of time at home. So I get a little bit like in decoration ways.

S: Was it like the group that you're living with, have you lived together before and you found this place or came together for this place?

E: Um, so we all came together. Me and Max had never lived together before.
S: How long have you guys been in this particular house?

E: Um, in feb, it was a year so it's been a little over here.

S: It’s so well set up, after just a year of living here.

E: Yeah, look, I spend a lot of time at home. So I get a little bit like in decoration ways.

S: Was it like the group that you're living with, have you lived together before and you found this place or came together for this place?

E: Um, so we all came together. Me and Max had never lived together before.
S: How long have you guys been in this particular house?

E: Um, in feb, it was a year so it's been a little over here.

S: It’s so well set up, after just a year of living here.

E: Yeah, look, I spend a lot of time at home. So I get a little bit like in decoration ways.

S: Was it like the group that you're living with, have you lived together before and you found this place or came together for this place?

E: Um, so we all came together. Me and Max had never lived together before.
S: How long have you guys been in this particular house?

E: Um, in feb, it was a year so it's been a little over here.

S: It’s so well set up, after just a year of living here.

E: Yeah, look, I spend a lot of time at home. So I get a little bit like in decoration ways.

S: Was it like the group that you're living with, have you lived together before and you found this place or came together for this place?

E: Um, so we all came together. Me and Max had never lived together before.
S: How long have you guys been in this particular house?

E: Um, in feb, it was a year so it's been a little over here.

S: It’s so well set up, after just a year of living here.

E: Yeah, look, I spend a lot of time at home. So I get a little bit like in decoration ways.

S: Was it like the group that you're living with, have you lived together before and you found this place or came together for this place?

E: Um, so we all came together. Me and Max had never lived together before.
S: How long have you guys been in this particular house?

E: Um, in feb, it was a year so it's been a little over here.

S: It’s so well set up, after just a year of living here.

E: Yeah, look, I spend a lot of time at home. So I get a little bit like in decoration ways.

S: Was it like the group that you're living with, have you lived together before and you found this place or came together for this place?

E: Um, so we all came together. Me and Max had never lived together before.

“A couple of sentences about what we are talking about in this piece. Whatever you want to say to provide some context before reading the interview.”

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Nory Gretz

More smiling faces means more genuine confidence, pure compassion and honest connection. TWICE is spreading the power of a smile to every single person on the planet.
S: How long have you guys been in this particular house?

E: Um, in feb, it was a year so it's been a little over here.

S: It’s so well set up, after just a year of living here.

E: Yeah, look, I spend a lot of time at home. So I get a little bit like in decoration ways.

S: Was it like the group that you're living with, have you lived together before and you found this place or came together for this place?

E: Um, so we all came together. Me and Max had never lived together before.

"Sadly, much of chronic pain is about accepting and honouring this contradictory truth: words cannot capture our pain, and yet they are all we have to work with."

We can hold two (competing) truths at once

Much of chronic pain is about accepting and honouring contradictory truths. Using words, numbers and labels to explain pain is a crucial part to survival, but they also serve to flatten our experiences. So instead, we learn to straddle these grey areas like a pillow between the thighs.

"Sadly, much of chronic pain is about accepting and honouring this contradictory truth: words cannot capture our pain, and yet they are all we have to work with."

LONG READ
As a child, I tell my mother that my stomach hurts. By this point I’m already spending most recesses and lunches in the school’s sick bay, lying on my side with a pillow wedged between my thighs. Eventually, I am asking to be excused so I can tend to my most tender parts during class, one pillow propped behind my back, another under my head, and a third for me to curl myself into. 

I will later learn how my teachers assume I’m exaggerating my pain to avoid my school work, how my grandmother questions whether I’m being bullied by my peers. I choose my words with precision, neat and methodical: sore, ache, hurts. Of course, at this age I don’t have access to a wide vocabulary, and so I am struggling to get the severity across. It’s not until blood appears that I’m taken to a specialist. 

Upon receiving my diagnosis, I am introduced to a new language, one that contains longer Latinate words and yet appears to me to be much simpler in its scope: I have an au-to-im-mune dis-ease, a condition wherein my immune system is mistakenly attacking my organs. Yet while this new terminology makes it quicker and easier to explain to others what I have, it does little to describe how it feels. 

By the time I receive my diagnosis, I am already teaching myself how to listen to and translate my body’s language. I have at various times described my pain as a lava lamp, a salty lake, a dirty lagoon, a ring of fireflies, like I’ve been gestating a paperweight, and like pulp being squeezed from an orange. When I have a migraine with aura, as I often do, I tend to describe it as butterflies flittering against my brow ridge, desperate to escape. Sharing my pain-language with someone else who has experienced a similar sensation tends to be met with an enthusiastic nod, or a yes, yes that’s exactly what it’s like. When sharing my pain-language with someone who has no experience of these sensations, I take comfort in knowing that these metaphors provide some minor insight into what my pain is like and ideally help them to better understand what I am coping with.

At the same time, I am also acutely aware of how pain balks at language, and how challenging it can be to capture pain using only our words. In her seminal work The Body In Pain: The Making and Unmaking of the World, essayist Elaine Scarry argues that “pain does not simply resist language but actively destroys it”.

You can't simply tell someone that you have an autoimmune disease, that your stomach always hurts, because they’re unlikely to understand exactly what that entails unless they too have experienced it.

Even now, over two decades post-diagnosis, my words can only do so much to bridge the gap between my pained body and others. Each time someone’s eyes glaze over as I take care with my words, my body brims with the same emotions: shame, embarrassment, loneliness. I tire over where I went wrong, deliberating over which words to choose next time, all the while knowing that it likely wouldn’t make a difference. 

Yet, despite knowing that the words were unlikely to capture my pain’s complexity, not trying was never an option. I knew then as I know now that learning ways to express my pain was, and continues to be, essential. Without this expression, I knew that I would be navigating my pain entirely alone, and I knew that I couldn’t survive without the care, love, and understanding of others. 

Sadly, much of chronic pain is about accepting and honouring this contradictory truth: words cannot capture our pain, and yet they are all we have to work with. Living with chronic pain is about learning how to work within this grey area, straddling it like a pillow between the thighs. 

"Once again we are made to straddle two competing truths, one that asks us to honour and respect pain’s depth, and the other that demands we flatten it."

Pain, particularly chronic pain, is in many ways still poorly understood. In The Culture of Pain, David B. Morris suggests that we as a society need to see pain “not as a puzzle but as a mystery”. To Morris, understanding pain as something with a clear answer to be solved dismisses how complicated pain can be, as both a phenomenon to be studied and an experience to live with. By recognising pain’s mysteriousness, we honour pain’s complexity.

However, Western medicine doesn’t take well to mystery, wanting instead to make sense of all that we cannot or do not yet understand. Rather than adapting to pain’s language, we’re asked to clumsily translate our pain into something simpler: pain scales.

During a routine appointment, I’m asked to rate my pain between one and ten, one being minimal to no pain and ten being the worst pain imaginable. Alongside each number are examples; one is compared to a mosquito bite, whereas ten is compared to a severe accident, such as a hand being crushed. “You’re unlikely to be above a five,” he tells me, “as you work full-time.”

Pain above a five is pain so severe it interferes with normal activities. When your pain is at a six, you are likely incapable of holding a job. Once your pain reaches a seven or an eight, suicidal thoughts are imminent.

I know that my pain is closer to a seven, because what my doctor doesn’t see is how often I hide in the office kitchen, an ice pack pressed against my temples, or how often I ask to lie on the floor of the phone room, a cushion shielding me from the overhead light. He doesn’t see how my body has acclimatised to pain that dominates my senses, how my senses are experts in adapting.

“I suppose it’s at a five then,” I dismally respond.



Being asked to place our pain in neat, numerical boxes ignores pain’s complexity. It ignores pain’s insurmountable depth and tells us that pain is one-dimensional. Numbers. Data.

But those of us living with chronic pain aren’t permitted disagreement when it comes to doctors and other healthcare workers. As tempted as I might be to protest, to arc up and reject this manner in which my pain is being spoken about, I am also aware of how doctors won’t hesitate to label me as “difficult” if I approach them with too much raw emotion. And how once these labels are attached to us, it’s near impossible to detach from them again.

Non-compliance is even riskier for bodies existing in the margins. One particularly devastating example is the treatment of Yamatji woman Ms Dhu, who was inappropriately labeled as a "difficult patient" and experienced subsequent medical neglect that resulted in her death. Being assigned labels like "non-compliant" and "resistant" can limit any sick person’s access to adequate medical care; for Black and Indigenous people, particularly women, it can result in our deaths.

Once again our chronic pain requires us to occupy a grey area, somewhere in between respecting our agency and our complexity, and cooperating so that we are not denied access to ongoing care. Once again we are made to straddle two competing truths, one that asks us to honour and respect pain’s depth, and the other that demands we flatten it.

"Once again we are made to straddle two competing truths, one that asks us to honour and respect pain’s depth, and the other that demands we flatten it."

"Striking a balance between language that reflects our experience, and language that feels safe and comfortable for us to use, can be a tiring and thankless task. "

"Striking a balance between language that reflects our experience, and language that feels safe and comfortable for us to use, can be a tiring and thankless task. "

Because I was diagnosed with my autoimmune disease in early childhood, I have long lost any memories of what it was like to live without my pain. My pain has always been present, and thus has always been pertinent to my identity. My pain predated my hobbies and interests, my appreciation for adrenaline-seeking activities, my long-term love of rollercoasters and haunted houses and horror movies. My pain informed how I interacted with others: warmly and stubbornly, tenderly and prickly.  

It wasn’t until late adolescence that I started considering various labels to describe my experience with pain. Up until this point I had simply said that I had a chronic illness, but by the time I turned 18 this label no longer felt sufficient. Once again, I could explain what I had, but it did little to describe what I was experiencing. I wanted something more. 

It was around the same time that I began meeting people who described themselves as disabled, and upon learning more about disability politics, I decided to adopt this label as my own. There was something particularly moving about choosing a label with such a rich and laboured legacy. 

I tend now to alternate between descriptors depending on the context. I am someone with an autoimmune disease. I have a chronic illness. I am disabled. But as willing as I am to proudly say that I’m disabled, adopting this language hasn’t been without its complications. Terms such as “chronic pain” and “disability” are still heavily stigmatised, with much of the stigma stemming from a poor understanding of what it means to embody these experiences.

Explaining to someone that I have a disability tends to be met with the same rotating roster of platitudes. But you don’t look sick. But you’re so young. I’m sure things will get better. It could be worse. 

Even among well-meaning loved ones, there is often the assumption that I’m just not trying hard enough. Several times I’ve heard, “it’s not that you can’t, it’s that you won’t” as though it makes all the difference. When citing my disability as a reason for not doing something, there’s almost always a momentary uneasiness as I wait to be challenged, and I’ve since learned, by necessity, to plan my reasoning out ahead of time. 

Inversely, where some people aren’t willing to accept or acknowledge my pain at all, others are unwilling to see anything but. With how all-encompassing pain can be, permeating my ability to work, study, participate in hobbies or interact with loved ones, I’m always at risk of my pain becoming my entire identity.

During periods where my pain has been particularly debilitating, I’ve had loved ones seemingly struggle to see me as anything other than a person needing care: a patient. Particularly when my pain has required someone to take on caring responsibilities, it has been hard to re-establish boundaries between my identity as a person in pain and the many other qualities and characteristics that make up who I am. 

The trouble with labels is that while they can provide a shared understanding, a shared history, and access to a community that can empathise with your experiences, they can also lead to being compartmentalised and seen only as that label. Being disabled, choosing to adopt this language into my identity, has been essential to the way I understand and locate myself in the world. At the same time, I want to be seen and heard and understood as a complete, complex person, someone whose disability is one part of the whole.

Whichever language people land on when naming or labelling their experience with chronic pain, we know that it likely wasn’t chosen in vain. Striking a balance between language that reflects our experience, and language that feels safe and comfortable for us to use, can be a tiring and thankless task. My wanting to be seen and valued as a whole, complex person doesn’t mean I want my pain to be ignored entirely, nor does it mean I want my pain to comprise my entire identity. 

In navigating this tension, it’s similarly important to be patient and compassionate with ourselves and each other, recognising the strength and spirit necessary to come to these decisions.

"It’s up to us to recognise the grey in our experiences, and it is up to those without chronic pain to stop seeing our experiences through a black-and-white lens. "

The truth is, those of us with chronic pain know what it’s like to live within the contradictions.

As much as we want to be heard in our own words, we know that words are limited in their ability to express our experiences. We recognise that the instruments used to assess us tend to be reductive and overly simplistic, but we also know that compliance drastically improves our ability to access treatment. We tire over which labels to use when describing our experiences, all the while knowing that there are consequences any which way we choose.

When people with chronic pain ignore pain’s complexity, including pain’s many contradictions, we’re ignoring pain’s substance altogether. Without recognising pain’s grey areas, we will continue to do our experiences a disservice. It’s up to us to recognise the grey in our experiences, and it is up to those without chronic pain to stop seeing our experiences through a black-and-white lens.

Those not living in chronic pain will likely never understand the ways in which we negotiate our many contradictory truths. It is deeply important that those without chronic pain recognise and respect these contradictions and support us as we attempt to navigate them.

More importantly, we owe it to ourselves, and each other, to respect and honour our pain for what it is: personal, complicated, and at times contradictory; an essential part of our identities, but only one part of the whole.

"It’s up to us to recognise the grey in our experiences, and it is up to those without chronic pain to stop seeing our experiences through a black-and-white lens. "

An illustration of the Sick Sad Girlz sitting in bed. The name 'Sick Sad Girlz' is hung up behind them in bunting lettersAn illustration of Sick Sad Girlz sitting in bed
Sick Sad Girlz
Sick Sad Girlz is a community platform that shares and celebrates stories of people’s personal experiences with chronic illness, mental health, and what it means to feel like a girl in the world. With a growing community across the globe, a podcast and weekly community meetings, Sick Sad Girlz exists as a support network and a reminder that whatever you’re going through, you’re not alone. Welcoming anyone who identifies with the SSGz community, our ethos is universal: no one is too sick or sad, or not sick or sad enough, to share their story.
We love a crybaby (!!) and we believe in the release that comes with letting your emotions out !! A big reason we created this platform was to encourage ourselves to share our stories rather than suffer in silence and hope that others would feel empowered to do the same.
We must remind ourselves that ‘one size fits all’ is an impossible approach to life. One rule we do try to follow is asking ourselves ‘what do I need?’ before considering how we may be seen by others or what ‘normal’ looks like. And if someone wants to tell us that we’re needy or impossible for that? We’re so grateful that there’s a community of SSGz who beg to differ.
We talk a lot about our relationship with medication, taking meds, side effects, getting diagnosed in the first place... the list goes on and on! A lot of our SSGz have shared their own stories around medication, tips and tricks for reminding themselves to take their prescriptions, what their regular cocktail of pills and potions look like and how it all feels. The pill box also feels like a symbol of the regimens and checklists of all the things we have to consider and contend with as Sick Sad Girlz on a daily basis!
We have a series where we talk about Sick Sad Girlz Thru the Ages: Figures in History that we relate to and that have a story around illness, sadness, and feeling like a girl in the world. We find that it helps contextualise our own experiences and is a nice reminder that we're not alone.
Performing wellness and the idea that being a Sick Sad Girl can look a million different ways, and not always in ways that are visible ! Also, how many times have we gotten dressed up to make ourselves feel a little better/more like "ourselves" in a moment of Sick Sadness!?
Sometimes at our Sickest and Saddest, we find it difficult to define boundaries and set them up in a way that feels good and helpful. Sometimes we're the ones who have pushed ourselves to the point of burn out and are feeling the repercussions in the form of flare up/low mood. Whatever it is, boundaries have a lot to do with our pain world.
We love a crybaby (!!) and we believe in the release that comes with letting your emotions out !! A big reason we created this platform was to encourage ourselves and each other to share our stories rather than suffer in silence and hope that others would feel empowered to do the same.
We love a crybaby (!!) and we believe in the release that comes with letting your emotions out !! A big reason we created this platform was to encourage ourselves to share our stories rather than suffer in silence and hope that others would feel empowered to do the same.
I have to remind myself that “one size fits all” is an impossible approach to life. Do I contradict myself? All the time, but I’m kind of convinced that’s just what life is. The one rule I do try to follow is just asking myself ‘what do you need?’ before considering how I may be seen by others or what ‘normal’ looks like. And if someone wants to tell me that I’m weird or needy or impossible for that? I’m so grateful that there’s a community of SSGz who beg to differ.
We must remind ourselves that ‘one size fits all’ is an impossible approach to life. One rule we do try to follow is asking ourselves ‘what do I need?’ before considering how we may be seen by others or what ‘normal’ looks like. And if someone wants to tell us that we’re needy or impossible for that? We’re so grateful that there’s a community of SSGz who beg to differ.
We talk a lot about our relationship with medication, taking meds, side effects, getting diagnosed in the first place... the list goes on and on! A lot of our SSGz have shared their own stories around medication, tips and tricks for reminding themselves to take their prescriptions, what their regular cocktail of pills and potions look like and how it all feels. The pill box also feels like a symbol of the regimens and checklists of all the things we have to consider and contend with as Sick Sad Girlz on a daily basis!
We talk a lot about our relationship with medication, taking meds, side effects, getting diagnosed in the first place... the list goes on and on! A lot of our SSGz have shared their own stories around medication, tips and tricks for reminding themselves to take their prescriptions, what their regular cocktail of pills and potions look like and how it all feels. The pill box also feels like a symbol of the regimens and checklists of all the things we have to consider and contend with as Sick Sad Girlz on a daily basis!
We have a series where we talk about Sick Sad Girlz Thru the Ages: Figures in History that we relate to and that have a story around illness, sadness, and feeling like a girl in the world. We find that it helps contextualise our own experiences and is a nice reminder that we're not alone.”
We have a series where we talk about Sick Sad Girlz Thru the Ages: Figures in History that we relate to and that have a story around illness, sadness, and feeling like a girl in the world. We find that it helps contextualise our own experiences and is a nice reminder that we're not alone.
Performing wellness and the idea that being a Sick Sad Girl can look a million different ways, and not always in ways that are visible ! Also, how many times have we gotten dressed up to make ourselves feel a little better/more like "ourselves" in a moment of Sick Sadness!?
Performing wellness and the idea that being a Sick Sad Girl can look a million different ways, and not always in ways that are visible ! Also, how many times have we gotten dressed up to make ourselves feel a little better/more like "ourselves" in a moment of Sick Sadness!?
Sometimes at our Sickest and Saddest, we find it can be very difficult to define boundaries and set them up in a way that feels good and helpful. Sometimes we're the ones who have pushed ourselves to the point of burn out and are feeling the repercussions in the form of flare up/low mood/feelings of overwhelm etc. Whatever it is, boundaries have a lot to do with our pain world.
Sometimes at our Sickest and Saddest, we find it difficult to define boundaries and set them up in a way that feels good and helpful. Sometimes we're the ones who have pushed ourselves to the point of burn out and are feeling the repercussions in the form of flare up/low mood. Whatever it is, boundaries have a lot to do with our pain world.
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An illustration of Artie sitting in bed. The name 'Artie Carden' is hung up above them in magazine cut-out lettersAn illustration of Artie sitting in bed
Artie Carden
I'm Artie (they/them). I'm a queer non-binary multiply-disabled creative. The combination of conditions I've been diagnosed with over the years has left me feeling lonely in mainstream society. Having been mostly housebound since late 2018, many of my in-person friends have dropped out of the picture, leaving me desperately trying to fill the void of loneliness isolation has given me.
 
I began writing and making videos about my experiences as a chronically ill person. I also created accessible resources for newly diagnosed patients in plain language so they didn't have to immediately learn medical language to understand their condition and their options. Through social media, I've been able to make connections with incredible people who share their pain worlds with me as I share mine with them, making my pain world a little less painful to go through everyday.
My tidy is not like yours. Something I’ve come to understand about myself is that the tidy sold to me by society is just not something I can do or keep up with. It also just doesn’t work for me!A HUGE thing I learned: I’m not lazy, messy, or useless. I need a different system and that’s fine.
I’ll tell you where it hurts. I don’t believe in invisible disabilities. I believe in non-disabled people not knowing the signs of disability. My joints ache, my skin blisters and bruises super easily, I wear sunglasses even when it isn’t sunny. There are always signs. You just don’t know how to spot them. #MyDisabilityIsVisible
I used to be really really active when I was a teenager (still chubby but very active). We used to do three hours a week of performing arts together PLUS in-school productions. I miss dancing, I miss improv classes, I miss feeling strong and feeling like I had strength. I AM STRONG. But I am so tired. And it breaks my heart.
I’m really tired of medical admin gaslighting me. The people who look at you suspiciously when you say “blood tests and cannulas are easier to get in this arm” or “blood pressure machines don’t work on that arm, you have to do it on my left” like I haven’t owned my own body for 27 years.
I'm Sick is a zine working through the grief of being disabled in the pandemic. Iused DIY crafting and collaging style to express the isolation of lockdown and the impact of ableist ideas in society.
It's a zine for when you want to feel seen and cry.
My tidy is not like yours. Something I’ve come to understand about myself is that the tidy sold to me by society is just not something I can do or keep up with. A HUGE thing I learned: I’m not lazy, messy, or useless. I need a different system + that’s fine. I just wanted to share one of my biggest struggles with you. I’m only JUST getting some grip on it. I turned 27 two weeks ago. 🙃
My tidy is not like yours. Something I’ve come to understand about myself is that the tidy sold to me by society is just not something I can do or keep up with. It also just doesn’t work for me!A HUGE thing I learned: I’m not lazy, messy, or useless. I need a different system and that’s fine.
I’ll tell you where it hurts. (Swipe to image 2). I don’t believe in invisible disabilities. I believe in non-disabled people not knowing the signs of disability. My joints ache, my skin blisters and bruises super easily, I wear sunglasses even when it isn’t sunny. There are always signs. You just don’t know how to spot them. 💕#MyDisabilityIsVisible
I’ll tell you where it hurts. I don’t believe in invisible disabilities. I believe in non-disabled people not knowing the signs of disability. My joints ache, my skin blisters and bruises super easily, I wear sunglasses even when it isn’t sunny. There are always signs. You just don’t know how to spot them. #MyDisabilityIsVisible
I used to be really really active when I was a teenager (still chubby but very active). We used to do three hours a week of performing arts together PLUS in-school productions. I miss dancing, I miss improv classes, I miss feeling strong and feeling like I had strength. I AM STRONG. But I am so tired. And it breaks my heart.
I used to be really really active when I was a teenager. I used to do three hours a week of performing arts PLUS in-school productions. I miss dancing, I miss improv classes, I miss feeling strong and feeling like I had strength. I AM STRONG. But I am so tired. And it breaks my heart.
I’m really tired of medical admin gaslighting me.The people who look at you suspiciously when you say “Blood tests and cannulas are easier to get in this arm” or “Blood pressure machines don’t work on that arm, you have to do it on my left” like I haven’t owned my own body for 27 years.
I’m really tired of medical admin gaslighting me. The people who look at you suspiciously when you say “blood tests and cannulas are easier to get in this arm” or “blood pressure machines don’t work on that arm, you have to do it on my left” like I haven’t owned my own body for 27 years.
I'm Sick is a zine working through the grief of being disabled in the pandemic. Using DIY crafting and collaging style to express the isolation of lockdown and the impact of ableist ideas in society. A zine if you want to feel seen and cry.
I'm Sick is a zine working through the grief of being disabled in the pandemic. I used DIY crafting and collaging style to express the isolation of lockdown and the impact of ableist ideas in society. It's a zine for when you want to feel seen and cry.
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An illustration of Fi sitting in bed. The name 'Fi Macrae' is written above them An illustration of Fi sitting in bed
Fi Macrae
As someone who lives in chronic pain due to endometriosis, among other illnesses, my experience in the healthcare system has given me a unique insight into the often tricky-to-navigate relationship between sexual and mental health. Isolation was the driving challenge behind years spent in debilitating pain, trial-and-error therapies, multiple surgeries, hormone treatments and everything in between. In my efforts to access an inclusive online community where allyship and education supported each other, Private Parts was born.

Although the name Private Parts is a cheeky nod to society’s prudishness, the conversations on Private Parts are anything but. In sharing stories, we challenge the traditional narrative of silencing those who experience trauma, who live with a disability, people who experience gender discrimination, survivors of assault and people in marginalised communities.
Welcome to the Private Parts Space. We are so excited you’ve found your way here. We cannot wait to connect with you all.
This week we spoke about finding intimacy or moments of pleasure within diagnosis, disability or chronic conditions. We are so honoured to have Lauren French on board to discuss rediscovering and reconnecting with our bodies.
I will be documenting my experience with opioid addiction and tracking my experience trying to come off them in the coming months.
I’m often asked what to take in for surgery, and seeing as I’m heading in tomorrow, here’s a little video on what I see to be the essentials list. I did however forget slippers / slides / headphones! (And to remove my nail polish.)
We talk to Jude about her practice - shiatsu. Jude focuses on working with people with chronic health conditions, survivors of trauma and the LGBTQIA+ community.
Welcome to the Private Parts Space. We are so excited you’ve found your way here. We cannot wait to connect with you all. 💖
Welcome to the Private Parts Space. We are so excited you’ve found your way here. We cannot wait to connect with you all.
This week we spoke about finding intimacy or moments of pleasure within diagnosis, disability or chronic conditions. It’s a big topic and this is just the beginning of the discussion but we are so honoured to have Lauren on board to discuss rediscovering and reconnecting with our bodies.
This week we spoke about finding intimacy or moments of pleasure within diagnosis, disability or chronic conditions. We are so honoured to have Lauren French on board to discuss rediscovering and reconnecting with our bodies.
I will be documenting my experience with opioid addiction and track my experience with coming off them as I try in the coming months.
I will be documenting my experience with opioid addiction and tracking my experience trying to come off them in the coming months.
I’m often asked what to take in for surgery, and seeing as I’m heading in tomorrow, here’s a little video on what I see to be the essentials list, I did however forget slippers/slides/headphone! (And remove nail polish)
I’m often asked what to take in for surgery, and seeing as I’m heading in tomorrow, here’s a little video on what I see to be the essentials list. I did however forget slippers / slides / headphones! (And to remove my nail polish.)
We talks to Jude about her practice - Shiatsu. Jude focuses on working with people with chronic health conditions, survivors of trauma and the LGBTQIA+ community.
We talk to Jude about her practice - shiatsu. Jude focuses on working with people with chronic health conditions, survivors of trauma and the LGBTQIA+ community.
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An illustration of Iman sitting in bed. The name 'Iman Rahman' is hung up above them in a speech bubbleAn illustration of Iman sitting in bed
Iman Rahman
My name is Iman (she/they), I am a 23-year-old disabled creative. I live with multiple chronic illnesses including ME, POTS, Fibromyalgia, Chronic Migraine, and hEDS. I am a lover of the arts and enjoy dancing and writing myself. I am currently housebound for the most part. I attend most doctor appointments virtually. My pain world is where I am found most. My bright and vibrant room.

Surrounded by velvet throw pillows. Laying down with my  weighted blanket and heating pad. Mood lighting, my bookshelf and reading chair. This is the place where I have created and survived the past 7 years. Though I have not worked or started college, I have learned so much from the online community. When the pandemic first started, I decided to make this space my own. Spending so much time here is difficult so I wanted to make it comfortable. It is now my comfort space even on my darkest days.
Breaking News: I’m in the New York Times. Disabled intimacy, unlike anything I've ever experienced. It's more amazing than anything people could imagine. It's the feeling that people deny is possible for us. The love we find in our community continues to save us.
I wrote this on ME Awareness Day 2021. Now a year later, it still hits home. Thinking of the many millions missing today and everyday. The wonderful friends and community missing from society.
Dancers know staring at yourself in the mirror for several hours a week affects you. Years later I struggle to look in the mirror by choice. I have been told many times that saying affirmations in the mirror can be empowering. I haven’t gotten there yet.
The process of acquiring meds is complicated. I have to convince the doctor to order the medication. There are many ways this can go wrong. Insurance doesn’t cover it, the order was never sent in or sent to the wrong place.
I use voice-to-text when I cannot type. I have wrist pain, my fingers throb, sometimes I cannot put my thoughts into words. I use voice control. Have things read out to me. It can be helpful when I can’t open my eyes during a painful migraine attack. Low volume, of course. I use headphones to block out noise. I have my phone announce my calls so I can decide if I need to pick them up or not when I’m resting. I wish technology was available for everyone. It’s a privilege I’m grateful for more than ever before.
I loved reading a story about two characters who talk about their chronic illnesses in such a real way. Honestly made me feel at home. Like how I do talking about the tough times with you guys here.
Breaking News: I’m in the New York Times‼️ 📰Disabled intimacy. unlike anything I've ever experienced. It's more amazing than anything people could imagine. It's the feeling that people deny is possible for us. The love we find in our community continues to save us.
Breaking News: I’m in the New York Times. Disabled intimacy, unlike anything I've ever experienced. It's more amazing than anything people could imagine. It's the feeling that people deny is possible for us. The love we find in our community continues to save us.
I wrote this on ME awareness day 2021. Now a year later. It still hits home. Thinking of the many millions missing today and everyday. The wonderful friends and community missing from society ❤️
I wrote this on ME Awareness Day 2021. Now a year later, it still hits home. Thinking of the many millions missing today and everyday. The wonderful friends and community missing from society.
Dancers know staring at yourself in the mirror for several hours a week affects you. Years later I struggle to look in the mirror by choice. I have been told many times that saying affirmations in the mirror can be empowering. I haven’t gotten there yet.
Dancers know staring at yourself in the mirror for several hours a week affects you. Years later I struggle to look in the mirror by choice. I have been told many times that saying affirmations in the mirror can be empowering. I haven’t gotten there yet.
The process of acquiring meds is complicated. I have to convince the doctor to order the medication. There are many ways this can go wrong. Insurance doesn’t cover it, the order was never sent in, or sent to the wrong place.
The process of acquiring meds is complicated. I have to convince the doctor to order the medication. There are many ways this can go wrong. Insurance doesn’t cover it, the order was never sent in or sent to the wrong place.
I use voice to text when I cannot type. I have wrist pain, my fingers throb, sometimes I cannot put my thoughts into words. I use voice control. Have things read out to me. It can be helpful when I can’t open my eyes during a painful migraine attack. Low volume of course. I use headphones to block out noise. I have my phone announce my calls so I can decide if I need to pick them up or not when I’m resting. I wish technology was available for everyone. It’s a privilege I’m grateful for more than ever before.
I use voice-to-text when I cannot type. I have wrist pain, my fingers throb, sometimes I cannot put my thoughts into words. I use voice control. Have things read out to me. It can be helpful when I can’t open my eyes during a painful migraine attack. Low volume, of course. I use headphones to block out noise. I have my phone announce my calls so I can decide if I need to pick them up or not when I’m resting. I wish technology was available for everyone. It’s a privilege I’m grateful for more than ever before.
I loved reading a story about two characters who talk about their chronic illnesses in such a real way. Honestly made me feel at home. Like how I do talking about the tough times with you guys here.
I loved reading a story about two characters who talk about their chronic illnesses in such a real way. Honestly made me feel at home. Like how I do talking about the tough times with you guys here.