Please forgive the rage that is about to ensue. This post is purely a “get it out of your head quickly” post.
This year I discovered wheelchair racing as a means to defy my enormous decline in physical health. I’ve blogged about this before & how it is the first sport that has not caused me excruciating pain. About how I finally felt able to participate in something physical. About how the inclusive nature of my team mates boosted my mental health immensely. I have my 1st post-holiday training session tomorrow evening & right now, for the first time ever I don’t want to go. Why?
Fast forward to tonight where I happened to stumble upon a twitter conversation about disabled sport classification by the IPC (in oder to take part in “real” races, you must be classified). They have released a statement specifically excluding Ehlers Danlos Syndrome as a qualifying disability for disabled sport. What this means for me is being treated as an able bodied athlete (you can stop laughing now…. seriously, stop it.) and as such can only participate in open races with no chance of joining my friends on the track for races against people similarly matched to my own actual ability.
Ok, I was never destined for anything other than local competitions & having fun, but I have rarely wished my genetics on anyone, however I’ll make an exception here. Especially after this news story. I am more than a little bit gutted. Any visions of progression in my one physical outlet (no matter how far fetched they may be) have been dashed because someone decided that one type of disability was “better” than another.
How dare they exclude genuinely disabled athletes because they don’t fit into a neat little tick box?! You are a professional body and as such have an obligation (if not legally, then morally) to pick up a goddamn book and read about conditions that cause a spectrum of disability. If you ever wondered why Ehlers Danlos Syndrome is considered an Invisible Illness, here is you prime example at the very highest level.
What does your not disabled look like?
It looks like a full time wheelchair user
It looks like someone who fights with their racing chair & dislocates joints and keeps going.
It looks like chronic pain that eats away at you & makes you question at 2am exactly why you keep going.
It looks like more medication than I can count on two hands.
It looks like my husband having to cook for me, and help me wash & dress myself.
It looks like strapping myself with physio tape to keep joints in place. And when that doesn’t work, biting my cheek to stop myself crying from pain in front of the kids I train with.
It looks like being lifted from my racing chair into my day chair due to no sensation in my lower legs because my spine is slowly curving & compressing my nerves.
Now tell me how perfectly able I am.
F*** you IPC and the bureaucratic horse you rode in on.