Culture

Why Telling Our Own Chronic Illness And Disability Stories Is So Important

The first instalment of our monthly 'Chronic and Iconic' column with Chloe Sargeant.

Chronic and Iconic: chronic illness and disability column

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Welcome to Chronic and Iconic, Junkee’s monthly column about chronic illness and disability, written by Chloe Sargeant.


Hi, wow, hello! This is the first in our Chronic And Iconic column, and I’m just so unbelievably overjoyed to be working together with Junkee to create a lil’ chunk of internet that is dedicated solely to the experiences, issues, and successes of disabled and chronically ill communities. I hope with this column, I can help to amplify the stories of my beloved community, as well as help people learn and challenge their ableism. 

Before I delve in, lemme quickly introduce myself. Hi! I’m Chloe. I’m a chronically ill writer, editor and podcaster, a queer cisgender woman, and I live with a condition called fibromyalgia, a condition where my nervous system malfunctions and sends incorrect messages to my brain, causing widespread chronic pain, fatigue, and memory and mobility issues.

I was diagnosed with fibromyalgia around three years ago, despite experiencing the symptoms for around a decade, and spending enormous amounts of my limited time, energy, and money begging various doctors for help. This outright lack of treatment, knowledge, and even base-level interest from medical professionals made me realise that people with disability and chronic illness are so rarely actually listened to, even by the people who supposedly exist wholly for that reason. Despite being a horrific experience overall, this maltreatment did make me passionate about the rights of the disabled and chronically ill communities, and determined to raise up our voices and make our stories and lived experiences heard. 

So, often when someone from our communities is in the media, they are interviewed by an able-bodied person who then distills their words down into a ‘palatable’ story. As someone who has worked as a journalist and news editor — yes, part of a journalist’s job is to share stories of those whose voices are not heard regularly by the masses. However, it is also a journalist’s job to tell stories thoroughly, factually, without personal bias and with the utmost respect to the subject. Unfortunately, this is often not what happens when it comes to disabled people. 

What often occurs instead is that ableism gets in the way, and the journo turns this person’s lived experience into an ‘inspirational’ story, which often reads like, “how could anyone POSSIBLY get out of bed in the morning like this?! How inspiring!”, which is demoralising, infantilising, and most of all, dehumanising. The unspoken point of these stories is to compare their lives to ours: “well, at least your life isn’t THIS bad”. As if living with disabilities and chronic illnesses is a Really Bad Unbearable Thing and you should be just so thankful you get to properly live, not just tragically survive like us. Like our lives are awful, terrible, bottom of the barrel, lowest in the social hierarchy, not worth getting out of bed for, not worth living. See what I mean about dehumanising?

The late great Stella Young, a cherished Australian writer and disability activist, gave a TED talk on this concept, labelling it ‘inspiration porn’ — and it is the best, most on-point description of the phenomenon that has ever, and will ever, exist.

“I’ve lost count of the number of times that I’ve been approached by strangers wanting to tell me that they think I’m brave or inspirational, and this was long before my work had any kind of public profile. They were just kind of congratulating me for managing to get up in the morning and remember my own name — and it is objectifying,” she said.

[NOTE: I encourage absolutely everyone to watch or read the transcription of Stella’s ‘I’m not your inspiration’ talk in its entirety, because it is enormously important and I (nor anyone else) can do Stella’s powerful words justice with just a simple summary. ]

Inspiration porn is discernibly common, and it is one of the major reasons why disabled and chronically ill people should be in charge of telling their own damn stories. Able-bodied people have proven time and time again that they can’t be trusted to tell our stories. They objectify us, infantilise us, and reduce us down to a ~thing~ that exists solely to ‘inspire’ and make non-disabled people feel better about themselves, rather than present us as human beings with our own damn lives (that we are happily, powerfully living by the way). 

So, we need to tell our own stories. We’re really good at it, promise. It’s one of the reasons I’m so bloody stoked about Junkee making space for my fellow disabled writers and I to tell our own stories here in this column. And there are plenty of other disabled and chronically ill people also creating their own spaces, too.

Stella Young was a flawless example of demanding disabled people be given the space and opportunity to speak for themselves. Her work editing Ramp Up on ABC gave disabled people a dedicated area to tell their own stories and demand change for their community, which was one of a kind and something that was completely unheard of at the time (just ten years ago).

Another perfect example is a book which came out this month called Growing up Disabled in Australia. The title is the first of its kind in Australia; an anthology created by, written by, illustrated by, and edited by disabled and chronically ill people. There are 48 disabled writers and creatives featured, who all contributed work that presents their experience with disability or chronic illness in their own unique way. 

Growing up Disabled in Australia is edited by Carly Findlay, an esteemed writer, speaker and appearance activist, who tells me that it was of the utmost importance that the anthology was disability-led, and that access and inclusion was considered at every step of the publishing process. 

“There’s a saying in disability rights, ‘nothing about us without us’… It means that we as disabled people should be involved in decisions, media, events that relate to disability. That our voices should be centred, and that we are regarded as experts of our own bodies, access needs and experiences. Additionally, many disabled people have not been afforded the privilege of telling their stories — especially people who are Aboriginal or intellectually disabled or communicate differently. So, it was important to me to include a big range of voices and experiences in the anthology.”

 

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A post shared by Carly Findlay OAM (@carlyfindlay)

Contributor Chantel Bongiovanni, a writer and powerchair athlete, explains that with her piece, she wanted to voice an experience that other disabled people have faced, but likely hadn’t ever seen reflected in the media. “As disabled people we sometimes don’t meet or see many people that are like us in mainstream media. By telling our own stories, we are bridging that divide.”

The anthology is an unparalleled example of disabled people carving out a piece of the world to share their experiences, and to make their mark and their voices heard. This isn’t something that has historically been easy or possible for the disability and chronic illness communities — but Carly inspirits and exemplifies that we can do this, through tenacity and pride and lifting one another up.

“Don’t be afraid to share your work, and of being proud of it. Your stories deserve to be heard. And there’s enough space for us all — for many different opinions. I hope this anthology demonstrates that and makes space for more voices.” 

‘Growing Up Disabled in Australia’ (Black Inc. Books) is out now.

Chronic And Iconic will be published monthly. If you come across any chronic illness and disability news, stories, or issues we can feature in this column, please get in touch.


Chloe Sargeant is a Sydney-based writer, reporter, illustrator, radiantly queer scallywag, noodle enthusiast, and one half of the Chronically Fully Sick podcast. She’s currently writing a book about living with fibromyalgia, and you can find her at @chlosarge on tweeters/insta.