On what is not far off of the year anniversary for my ‘Rare Disease Talks’ post where I spoke about BBC’s Casualty’s representation of Ehlers-Danlos Syndrome, Fibromyalgia and Postural Orthostatic Tachycardia Syndrome (PoTS), I’m back with another*. This one varies slightly, with the representation being served upon a reality television show, but I think this specific case is insightful for the public and having it presented in mainstream media is something that gets a thumbs up from me.
*I began to write this post back in March, but due to college and chronic illness, I was unable to complete it at the time, so am only finishing it and asking now.
RuPaul’s Drag Race
RuPaul’s Drag Race has been showing since 2009, starting as a small talent show for the artistic presentation that is drag, and soon reaching great heights by falling into the media, loved by queer people and cishet people alike. The show now has hundreds of thousands of viewers around the world, and has been shown on LogoTV, VH1, Netflix and Comedy Central UK to name a few.
Now, I have to say, I’m not so fond of ‘Mama Ru’ (RuPaul Charles) as a person due to some of the problematic things he’s done, but I acknowledge that Drag Race is one of the most accessible ports in which one can find Drag Queens, and it’s also important to support queer art as it’s made mainstream. The show is, regardless of one’s opinion of the host, a great way to showcase the art of drag, and for queer people like myself to find icons and inspirations.
My favourite queens include Adore Delano, Miz Cracker, Jinkx Monsoon, Miss Fame, Sasha Velour, Katya, Nina West, and last but not least, Yvie Oddly.
Yvie is one of the incredible queen’s season 11 of the show has brought to us; through controversial debates, I’ve found myself supporting her still, and keeping faith in her. As an artist, I’ve found myself drawn to her personality and drag style without a doubt. From the beginning of the season, I couldn’t help love her – she’s ‘weird’, and so am I, and there’s something I adore about her completely. Soon enough I found another reason to cling to her – disability.
First of all, as a disabled drag queen… I cried. I’m not in any way close to her level, of course, but queer culture and disability both make up a huge part of me. They form my identity; heck, my drag name is even ‘Faye BroMyalgia’, named after one of my chronic illnesses. So, seeing another chronically ill queen tugged at my heart a fair bit.
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My queer #zebra #spoonie ass is #TeamYvie this season. Thank you for the representation of EDS – if I didn’t adore you enough already, as a disabled queen, I appreciate you so much 💙 and thank you for representing one of my illnesses ✨🦓 #eds #ehlersdanlossyndrome #drag #dragqueen #nonbinary #pansexual #sapphic #gay #queer #lgbt #disableddragqueen #disabled #mua #makeup #makeupartist #artist #performer
Another huge thing to me was what I’m here to talk about: Media representation.
Ehlers-Danlos Syndrome is classed as a ‘rare disease’, despite being one of the most known of the category in this society. Saying that, I have a fair amount of friends in the spoonie community and others will know from friends…. but it still stands that Ehlers-Danlos is a rare disease, and the rare diease people are aware of most.
A lot of people don’t understand the extent to which Ehlers-Danlos impacts people’s lives and frequently shove it off as ‘a little flexible’ but it’s much deeper than that, and though I’d wish no such dislocation or muscular/ligament injury subsequent from a subluxation on anyone, Yvie was there to show us how it’s much more than that.
From the stretchy skin Yvie has, to her flexibility, to her ankle injury and discussion of the future, she’s done us well.
Yvie speaks, at a point in the competition, about her future. She speaks of someone not much older than her who has gone from her bodily state to now being in a wheelchair. This is a fair thing to mention, as many of us are ambulatory wheelchair users and the condition does make that a necessary in a lot of cases. This is something I want to wave in the faces of people who say I do or did look fine, and try to make them understand the unpredictability of the condition and decline of strength frequently.
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I came across this candid from the other day and instantly hated it: I think, maybe, that was hatred towards EDS, ME, Fibromyalgia and all the other chronic pain thrown at me. I laugh to keep myself cheerful, but another dislocation after 6 days being slightly-more-able-bodied-than-before hit me hard, emotionally. These disabilities have changed my life, my future, the goals I’ve worked towards. Upon reflection, I have decided I like it. I can’t change my disabilities, and every day I’m learning how to live with them. I’m fed up of being unable to walk, I’m fed up of pain, but I am disabled and have to embrace that. So, I guess this is a kind of acceptance, preaching love, post. #disabledanndcute #myalgicencephalomyelitis #fibromyalgia #ehlersdanlossyndrome
A main other thing I held onto was her use of a cane on the runway. Mobility aids are frequently stigmatised, especially in the young (yes, people are not only ableist, but ageist) when used for chronic illness, but praised when used for fashion (right now we’re playing Selma Blair vs Benedict Cumberbatch). This only prods at the wound of endless teasing, public stares, and comments we get…. but like Blair, Yvie Oddly didn’t sport a cane for fashion; she made it fashion (which, may I say, all disabled people do every day they use aids, because there’s nothing more beautiful about an outfit than seeing a liberating mobility device one needs).
Mobility aids are important to us chronically ill folk (for those that do and need to use them) and it truly doesn’t matter if it you don’t think it fits with an aesthetic… that isn’t what’s important. My mobility aids are truly a huge part of my freedoms and I’m sure not ashamed of being seen with them… (though I’d be lying if I said I wasn’t made anxious or sad by ignorance from ableds).
Yvie Oddly used the mobility aid she needed and that’s the representation we need.
Especially after last year’s mistake of using wheelchairs to propel a legend-bodied mermaids along the runway (there’s a range of ways you could have let them show off their mermaid fashion without appropriating necessities for disabled folk).
I just want to put my hands up and say:
Thank you, Yvie Oddly.
Thank you for the representation of my illness, of many people in the community, for talking so openly in the workroom (and bless up the support from Shuga, especially!) and to the nation, the world. It means so much to us. So, so much.
We love you, Yvie, and as I’ve been since day 1, I’m #TeamYvie this season.