Naomi Chainey shares her experience with chronic fatigue syndrome and how social media is connecting those living with disabilities like never before.
I became ill with ME/CFS, also called myalgic encephalomyelitis or - if you enjoy trivialising horrible illnesses with silly names - chronic fatigue syndrome, in 2005. Barely in my twenties and just out of uni, I suddenly found myself confined (mostly) to my home with debilitating fatigue and nausea. I was isolated, both by lack of mobility and an invisible illness experience that those around me struggled to acknowledge, let alone relate to. Phone calls became physically difficult as the illness began to impact my vocal chords and concentration. Sound was a problem. Too much of it hurt my head. Besides, excuses to call people were dwindling as I had little to report. I was grieving for the able-bodied life that was fast becoming a memory, and I had never felt more alone or hopeless.
Social media, when it took off a year later, was a godsend. A link, not only to the friends and colleagues I’d been missing, but to other people with ME/CFS. Forced by illness into solitary existences, we were suddenly able to connect en masse. For those who’d been ill for decades it was a revelation. The question of how to run an ME/CFS support group, when so many of us struggled to leave our beds, was suddenly answered. For us, Facebook was a window to the world.
So, when a satirical image by Polish artist Pawal Kuczynski started doing the rounds of chronic illness forums (see above), a resounding cry of “Yes! This is us!” began to echo about. Facebook is the periscope - the miraculous means by which to view life outside the dingy room.
"I was grieving for the able-bodied life that was fast becoming a memory"
Kuczynski’s image speaks so well to the under-represented experience of being housebound that it’s easy to imagine this was actually the intention. In all likelihood, of course, it never was. Those who take their potential to interact with the world for granted (the default able-bodied audience) are less likely to interpret Kuczynski’s periscope as a lifeline. In actuality, Kuczynski seems to be depicting social media as a barrier to true participation. An unnecessary lens distracting us from the door through which life may be experienced more directly. The message is an old one, reflecting tired cultural critique of video games, television, radio and novels dating back as far back as the 1800’s. Abandon your frivolous distractions and experience the real world, kids!
Such critique is, of course, usually a generational affair - despairing over the deficiencies of youth has been a human hobby since time immemorial. Emerging technologies embraced by the young are inevitably viewed as unnecessary by their elders who went without (and turned out very well, thank-you very much!). The hashtag #howtoconfuseamillenial is the latest example, with boomers unironically lambasting their kids’ social media use on twitter before the hashtag was usurped by millennials themselves.
But in the rush to dismiss twenty-somethings as self-absorbed zombies, drained of all life by smart phone addictions, the societal benefits of social media can be overlooked. In fact, social media may be saving lives. As fellow ME/CFSer Samantha Whitehead put it “Facebook has been such a lifeline for me. Not only because disability has curtailed my socialising, but also because I was able to maintain friendships despite being physically and socially isolated by an abusive partner.”
"Facebook has been such a lifeline for me..."
Women with disabilities are a high risk demographic for domestic violence. Men with disabilities aren’t far behind. With isolation being a common tactic of abusers, social media gives those experiencing violence ways to stay connected, and ultimately, people to turn to if they need support to leave a dangerous situation.
The equalising effect of social media has also provided fertile ground for disability rights activism. No longer does the media simply speak to its audience, exclusively representing those privileged enough to attain access. The audience has now become the media. Poorly represented minorities now have public space in which to demand their rights. The NDIS campaign made great use of this, raising collective consciousness around the unmet needs of those with severe impairments. People who literally cannot speak have now gained the capacity to reach large communities.
For my own community - the ME/CFS tribe – the (relatively) newfound ability to meet in large, supportive groups is slowly but surely resulting in a change of fortune. With limited ability to travel or interact, we have not previously had much capacity to lobby, but now, with a decade of social media under our belts, we are seeing global demonstrations. The stories of severe sufferers, previously out of sight and out of mind, are now making the rounds of YouTube. Dubious research which has held great influence over our medical treatment and welfare is now being challenged across multiple media platforms, with gradual changes being made to public policy as a result.
In light of all this tangible real-world impact, it would be nice to see critique of social media taking on a little more nuance. Knee jerk reactions to new forms of information sharing are increasingly old news.