Writing published elsewhere

Recently I was lucky enough to have two pieces of my writing published. The first was for a popular Australian lifestyle website, Mamamia, entitled, “Seven things you probably don’t know about chronic fatigue syndrome.” I was very grateful for the opportunity to share my experience of ME/CFS with a wider audience, and it was well-received within the Aussie ME/CFS community.

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10 take aways from Jen Brea’s TED talk

If you have anything to do with the ME/CFS community, you can’t have missed hearing about Jen Brea’s TED Talk. Her speech, “What happens when you have a disease doctors can’t diagnose”, was the first of its kind to address ME/CFS. If you haven’t already, I would highly recommend you watch the whole video – Jen is an engaging speaker, and in 17 short minutes, she covers nearly every issue facing ME/CFS sufferers today.

However, I know that not everyone has the time in the day to watch a 17-minute video, and many ME/CFS patients cannot watch video or listen to speech at all. (If this is the case, and you still have the ability to read longer texts, I would recommend looking at the transcript of the speech.) So just for you, I’ve picked out my top ten take-aways from Jen’s speech. Continue reading “10 take aways from Jen Brea’s TED talk”

Pumpkin Chevrons

One of my go-tos when I’m stuck between knitting projects is a hat. They take very little time and yarn to knit, and I can usually squeeze one out from leftover yarn from a cardi or jumper. The yarn in this particular project (Heirloom Easy Care 8ply) was leftover from my Pumpkin Vianne cardigan, and because I’m an unimaginative clod, it’s called Pumpkin Chevrons.

A woman wears a handknit, pumpkin coloured hat and white tee.

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More “Othering”, Media Representation and Cripping Up

Last week, I talked about how people with disabilities can be “othered” and presented as different to, and therefore less than, the rest of society. Othering – the characterisation of a certain group of people as intrinsically unlike the “rest of us” – can occur in a myriad of ways, but perhaps the most obvious example is media representation.

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Simplicity 1873 Sun Jacket

One of the strategies I use to maintain my current level of activity is have my dad take me for a drive in the afternoon. It gets me out of the house at a time I’d really rather be sleeping, and ensures I stay accustomed to the (horrible!) motion of the car. The sun has been so hot this summer that I can feel it burning me through the windscreen (sunscreen or no), and I’ve been covering up with a multitude of scarves.

A woman stands against a garden fence. She wears a blue and white polka dot sun jacket, yellow shirt, and red floral print skirt.

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Story published on The Mighty – A Grief That Never Ends

Hi folks! Just an update that I’ve had another story published on The Mighty. It is about the continual process of grieving through chronic illness, and how so few people can really cope with others’ grief.

You can read more on: The Ongoing Process of Grief When You Have a Chronic Illness.

On Burdens, Othering, and the Social Model of Disability

One of the greatest burdens of having a disability is the oft-repeated myth that in being disabled, we are ourselves a burden. That the lives of the disabled are by definition, less worthy than those of able-bodied people, and that any attempt to accomodate us is a praise-worthy deviation from the norm, rather than a basic standard of behaviour.

Australia Social Services Minister Christian Porter tweets: Disability burden $17bn a year. Stephen Koukoulas replies, "burden"?

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