Something hit a bit of a nerve with me the other night. I was watching The Last Leg’s Paralympic coverage in Rio and all three presenters thought it was hilarious that the athlete in the wheelchair stood up. Now, I’m no fan of the politically correct brigade making mountains out of molehills for the sake of it, but this genuinely worries me. I want to explain why:
I can walk. Sometimes I can walk and manage NOT look like I’ve shit my pants. Sometimes I have a limp and sometimes I face plant the floor because of my unreliable ankles. Sometimes I can walk absolutely fine – which is a blessing and a curse because people assume I’m not in pain. Sometimes I am okay the next day but usually I am in agony and can be bedridden for days as a result – one of the “perks” of my illness is that I’m allergic to all the pain killers. My mobility issues arise because my Ehlers-Danlos Syndrome makes my ankles, hips and lower spine (among other joints and limbs) particularly hypermobile. Because my connective tissue is as much use as a chocolate teapot, my muscles have to work overtime to stop my joints from dislocating. Remember the first time you went to the gym, hiked a mountain or did some kind of fitness challenge? That is my bread and butter kind of pain. That’s a good day for me. I genuinely thought everyone felt like this every day until recently. No wonder I am permanently exhausted.
I have reached the point in my life where I am looking into a wheelchair or mobility scooter to get out the house. Most disabled or chronically ill people are aware of the spoon theory. Right now, going to the supermarket uses up all of my spoons, actually, it dips into my spoon supply for several days. It leaves me with absolutely no quality of life because going out is not worth the price I tend to pay. The only way for me to feel okay is to stay in the house and take it easy. But then I don’t feel mentally okay. So, I’m going to rent a mobility scooter for a week. I can’t afford to buy one, not even close. But, for a week of freedom, I’m going to try it.
My point is, when I’m in the supermarket with my rented scooter/wheelchair and I stand up to reach something off the shelf – is that how people are going to react? I mean, that’s how two people WITH disabilities on a TV show (broadcasting the Paralympics) reacted to someone standing up out a wheelchair. It genuinely churns my stomach. I know they meant no malice, but it really upset me. I’m not missing a leg, my connective tissue is fucked. I can’t get a new body, I just have to try really hard to supply TLC to the one I have and I’m bloody terrified of people judging me for it. ‘Mon yersel’ to the guy who has made it to the Paralympics despite his invisible illness, I can’t even make it to bloody ASDA!