I’m going through a major fatigue slump so I actually really cannot care for effort in the way of looking at a bright computer, using my fingers to type or constructing comprehensible sentences. But, I really want to get this out in to the universe before I forget the true feeling and moment.
I’ve always wanted to go to Toowoomba. I’ve since realised that I’m not sure if it was T-ba itself or those white people instagram posts of the sunflower fields that really sparked my curiosity. But it’s safe to say I’ve asked everyone with a car who I could stand two hours in a car with if we could go to T-ba.
And it happened. Three years after putting my request into the universe. But it happened.
I don’t know how much I can say (hi malc I know you read this so let me know if there’s too much info) but Malcolm caught wind of this highly sought after career change. In T-ba. However, the catch is that he’d have to settle in t-ba for five years plus. So he wanted to go and check out the city he was committing himself to. Hell yes m8’s, I’m in, I get to go to T-ba – the place of my dreams!
I don’t have legs.
I’m committing to moving with this human to a place I’ve never been and I don’t have legs to look at said place.
I thought this was a non-controversial option, right?? I visibly don’t have working legs at the moment. We’ll hire a wheelchair for the day and Malcolm will push me around site-seeing. Very boring, yeah?
WRONG! Very controversial move. Very political act.
The first place we go is kmart in T-ba to get a phone charger. It was a small shopping centre with a Coles, Kmart and a coffee shop or something. It’s Monday and it’s just packed to the brink with old people. It probably wasn’t even packed but the feeling of being near one old person just gives me extreme anxiety. I worked in a newsagent and I realised that old people who frequent newsagents and loiter around shopping malls are cunts. Pure cunts bred from pedigree cunts. As in… I almost got fired because this old guy complained to THE OWNER of the store (not even management) that I did not smile at him or laugh at his jokes. That ain’t a fucking complaint cunt, that’s called sexism. The 50’s called, they want your sexism and misogyny back.
Okay, I’m getting distracted by my hate of old people and Julia Gillard’s sexism and misogyny speech. AGAIN (happens about twice a day, at least).
Mind you, this is my first outing in three weeks since I broke my foot and sprained my other ankle. I’ve been a big ball of tired and frustrated human who is mildly depressed at their circumstances. It’s time for a nice outing. It’s time to see the world in all its glory. It’s time, young ones.
I’m sooooo excited to be leaving the house. Nothing will bring me down. It’s like when a celebrity gets out of jail or something and can’t wait to meet all their fans again. Except it’s me going to the shops in a wheelchair.
Also, I looked hot AF in my $7 thrifted op shop flowery playsuit and my $15 thrifted op shop jacket. I’m absolutely at the peak of my cripple life. I look hot af, I’m in my dream place my soul has been yearning to visit and I’m entering a fucking kmart. KMART.
Malcolm is wheeling me into the shops and then the nightmare begins. Every fucking living person in the shopping centre is blatantly staring at me as I’m being wheeled around. I admit, I’m a drama llama. I have anxiety and sometimes I just feel like the world hates me. But Malcolm actually commented on it to me like wtf why is everyone staring at us. I kind of made a joke like LOL it t-ba they probably haven’t ever seen an “”””inter-racial couple before”””” but it was definitely because I was in a wheelchair. Some lady even looked me UP AND DOWN. The full judgement of a judge-y person looking me UP AND DOWN.
The Malcolm and Codii consensus on these disapproving stares is as follows:
“You don’t look sick enough to be in a wheelchair”
“You are smiling and/or laughing which means you aren’t sick enough to need a wheelchair”
“Wheelchairs are for sick people and you look like a YOUNG HOT AF binch so therefore you don’t need a wheelchair”
“You are giving a bad name to people who actually need wheelchairs”
“You don’t look sick. Sick people look miserable and pale.”
Look, I know this all sounds a little like I’m a special little snowflake making this up and people were just genuinely curious. I can assure you this was not the case. Some guy did approach me for a chat because he was curious and he was like “ah love looks like you’ve been in the wars, what have you done to yaself?” to which I explained. A few other people just laughed or smiled because I looked happy and happy people are contagious.
It got to a point where I was self-conscious as fuck. I was questioning whether I was sick enough to be in a wheelchair. I even said to Malcolm that I need to stop smiling and being happy about my ability to leave the house. I need to act sick and apparently sick people don’t smile and they sure as heck don’t laugh. It’s actually illegal to be a grateful sick person. To show gratitude to be able to leave the house and have a choice about what you eat/where you go/what groceries you pick.
All of this would kind of not have been as big of a problem if I didn’t have CFS. I would have just thought that it was one day and I would have moved on with my life. But fuck that! I, along with thousands of other people, have an invisible illness that renders us completely hopeless and feeling mostly useless. Even on a good day some of my fellow CFS pals could probably do with a wheelchair in order to leave the house.
Congratulations to people who don’t know what it’s like to be unable to walk from the car park, around the shops to pick some weekly groceries and then cart them in to the house.
Congratulations to people who don’t know what it’s like to actually have to think hard about the last time they left the house and to not come up with an answer that is weeks/months/years ago.
Congratulations to people who don’t know what it’s like to told they don’t look sick, to exercise more, sleep less, harden up.
But you know what? Some of us with working legs and a working face that can smile from time-to-time wouldn’t mind a day out. We don’t ask for much – the bare minimum in fact. Sometimes I don’t even ask Malcolm for breakfast or a shower because I want him to have a break from caring for me.
I always maintain that you can’t look at someone and know what’s going on with their life. No one would look at me and think that I can’t walk to do basic chores on a good day. In fact, I think most of us chronically ill people are fucking geniuses in that we hide so much of how we feel to try and “act normal” and fit into the world as seamlessly as possible. The last thing I want is attention for being your regular neighbourhood sick friend who lets the world know they are sick.
I think there’s this myth that wheelchairs are for people whose legs don’t work. I think that is the actual most illogical thing I’ve ever heard. I’m not saying this to minimise the experiences of those who need wheelchairs due to their legs not work. I just think wheelchairs are for many more uses than simply that which need to be acknowledged.
I can’t picture a day where someone like me would go spend money hiring a wheelchair (because they don’t pop out of thin air), then intentionally try to cause harm by going in to a public space laughing and being happy with an able body just to piss people off and be an insensitive loser. And I think people need to think about that.
What the fuck is with all the judging?
After all, I’m in a wheelchair and I have the capacity to run you the fuck down. Don’t tempt me.
Please, hit me up with similar experiences you’ve had to make me feel like less of a drama queen and validate my hurt feels.
Codii + Bindi