The opinions expressed in this piece are those of the writer and do not necessarily reflect those of The Hysteria Collective as a whole.
Ableism in the media is sadly, nothing new.
In recent weeks, the BBC have released their documentary about an online influencer who faked having terminal cancer and various other medical conditions, who was “cured” by a dangerous obsession with healthy eating. And on August 6th , they posted a video across their social medias talking about current online personalities, who openly discuss their health conditions, and to me, it felt like they were trying to point blame at the “liars” who talk about being ill and yet enjoy going to the pub or an event. Interestingly, a significant portion of those featured in the 5 minute video identified as women. And quite frankly, as a women with chronic health conditions, this disgusted me. The video went on to “investigate” several as they followed them online, trying to find flaws.
It also felt like they were trying to compare the two, as if someone who is taking agency in how they share information and educate an audience is as bad as someone who made millions conning other ill women.
But a chronic condition isn’t a simple path.
Tilly Rose, aka ThatOxfordGirl on Instagram, is frank about how living with Tuberculosis affects her day to day, and how even the same day can reach two different extremes with the disease.
If these people talking about the condition they are living with cannot speak up about it because people are uncomfortable about it, then what? The reduction in stigma and the increased knowledge de-mystifying conditions (some of which might be rarer and less discussed than, say Crohn’s) far outweighs the holiday photos of sitting on a beach people might criticise. Think of the ALS Ice Bucket Challenge that went viral almost a decade ago – in the past year or so, there was a research breakthrough because of the public funding and attention drawn to the condition.
Why are we expecting them to ‘prove their illnesses’? We don’t go up to someone suffering from Cancer or a person with a broken arm to demand to see that it’s not a fabrication. Why should “X medical condition that is never discussed” be so different in the terms of respect we give it?
I have medical conditions which are rare. Less than 1 in 3500 people have one of mine and another few are rarer still, and I still remember the woman who told a teenage me off for smoking (which I have never done and will never do) as that was surely the reason why I couldn’t breathe walking along a flat road. For the record, it was something I was born with. And it is that exact thinking that has led me to push myself beyond healthy boundaries for the sake of being “normal”. Imagine what this shaming is doing to those who are less able than myself, or are newly diagnosed.
Not every disability is visible. Mine is not. You cannot see a stoma when someone is wearing a coat on top. It is not an outsider’s decision to police how we react with that.
It’s not our jobs to educate you, but even still: if someone is choosing to online, showing good and bad days and the intimate parts of their conditions, they should not be criticised for displaying that. If anything, it could help someone else come to terms with their similar situations.
For many, platforms such as YouTube, which can be utilised from their homes whenever they want, have been the main way they can even earn an income if they are too sick to be able to physically attend a job. How is the work so different and so widely criticised just because it’s a different platform? Because it removes the curtain across something nobody on mainstream media is really talking about?
YouTube is a site which is accessible for free just by having an internet connection. You cannot get more accessible to information than that.
And why are we just defining people by their disability and nothing else? People who hide away from the sight of a wheelchair but scream at this person, who is walking yet parking in a Disabled space. Hannah Witton has a stoma, but she is also an educator, a booktuber, an award-winning author. Jessica Kelgren-Fozard has a fascination with vintage and retro clothing aesthetics, plenty of videos talking about queer history, and rare medical conditions. I love video games and also creating content for them, but my medical condition means I can’t climb more than two flights of stairs without difficulty.
We are not one dimensional, and we are most certainly not faking it for online attention.
Stop policing our decisions to take agency. Women have a hard enough time being taken seriously by medical professionals, with some chronic conditions not being diagnosed for decades.
Image courtesy of Andrew Neel