February 28 is rare disease day. Well okay, technically February 29 is rare disease day, but as we members of the rare disease community aim to be noticed more than once every four years, it is usually observed on the 28th). Usually this is a day for both reflection and awareness, during which people like me – a 30-year-old disabled man with the connective tissue disorder Ehlers-Danlos Syndrome (EDS) – can enjoy some much-needed attention to our generally overlooked cause. On this Rare Disease Day, however, I was confronted with a devastating video created by the website AJ+, a site which claims a mission to “share human struggles.” Instead of promoting understanding and solidarity, however, this video instead contained an eerie sense of voyeuristic aspiration.
“DISABILITY OR SUPERABILITY?” the video grandly opens, then proceeds to show various impressive contortionist feats performed by people with EDS. And although the video does eventually discuss the horrific state of chronic pain and injury that are all-too familiar to us EDS patients, the overall clear message of this video, with its myriad of amazing circus stunts, is: “Wouldn’t this disease be so cool to have??”
I would have cried from anger if I hadn’t already been crying from pain. The way I have cried every day for nearly half my life.
Yes, we EDSers can often dislocate our joints at will – though more often they dislocate on their own with no help from us – but when they do, it hurts every bit as much as it would hurt you. Have you ever seen those movie scenes where someone (usually Mel Gibson) dislocates his shoulder, and he screams in agony? That is what our lives look like every day. It is not a fun trick: it is quite literally hell.
In spotlighting and glorifying these acts of contortion, the video also inherently promotes these acts, which are in fact grossly dangerous for most EDS patients to attempt as they can lead to permanent injury and/or accelerate the degenerative pathology of the disease. In other words, fellow EDSers: do NOT try this at home!
But the video got one thing right: we ARE superheroes. Not because we can contort ourselves, but because we wake up every single day determined to try again. Because in spite of our monumental struggles, we try to live a live filled with meaning and any hint of normalcy we can attain. The odds are stacked against us, but as people with a rare disease we have never been ones to place our faith in odds.
We pray for a cure, or at the very least for any medical advance that will make our lives more manageable. But this will never happen if the world thinks that our mutations turn us into the X-Men. Because at the end of the day, we are just people. We don’t need hero worship. We need understanding. We need support. And above all, we need love.
Thank you, from the bottom of my heart, to every single person who has given me those three things. In every sense of the word, I would not exist without you.