we need to talk.

this post was originally published on the 11th of April, 2014.

This year has been incredible so far. I have so many things to be thankful for; my amazing uni studies and the people I study with, my family, my friends, theatre, music, countless opportunities within the theatre industry... Everything's great so far, and I can honestly say I haven't been this happy in a really long time. 2013 was super crap, so thanks, 2014, for being super rad.

But every now and then I feel little something eat away at that happy Maddie. 

It's no secret that I'm a little (ha) different to everyone I study with. Yes. I have a disability. Big deal. It doesn't define me. I'd like to think that everyone thinks of me as that Maddie chick who laughs really weirdly at obscure jokes in lectures, that Maddie chick with the ridiculously big boobs and butt-length hair, or that Maddie chick who needs to shut up and get off Facebook. It's a really bizarre feeling to start to feel - for lack of a better word - 'accepted', only to have that feeling taken away.

Let me elaborate.

Picture yourself standing in a room full of people for hours on end. You're thirsty, tired, and you feel a bit of muscle strain from not moving at all. Now imagine yourself standing in that same spot, without moving, for 24 hours. What you feel after 24 hours is almost what I feel after 24 minutes. Except I can't stand in the same spot without moving for 24 minutes. I'd pass out.

Picture yourself sitting in a plastic chair at uni. Now stand up. Bet you didn't have to think about it too much, eh? Now try to stand without relying on the muscles in your legs. Now you have to think about hand placement - 'where do I put this hand? and this hand? will this give enough height to push up off?' - or you have to consider the helping hands of your friends - 'I don't have the strength to pull at all, so I don't want to try and end up on the floor again.' Oops. You've failed at getting up. You fell straight back into the seat. Everyone's silent around you, so you laugh. 'Ahaha, oh gravity, you're so great' you joke. 

Picture yourself taking your first overseas trip and having three flight attendants and three airport workers transfer you via wheelchair to your gate, through security, to your plane, everywhere. Sounds like fun, but just imagine everyone staring at you the entire time. 

Imagine that you could only walk at 500m per hour. How much would that suck?

You see, I don't have to imagine these scenarios. I live these scenarios. It's all very fine and well for people to tell me I'm brave and strong and all that jazz, but you know what? I'm not going to pretend it's a walk in the park (if I had the energy to in fact walk through said park). 

People make ignorant comments because they don't understand. So I'm going to help you understand, so you don't make those comments, because I'm sick of letting it slide and struggling to defend myself.

Communicating with Maddie:

  1. Jokes about the speed in which I walk are NOT okay. They hurt. Please don't make them.
  2. Jokes about the way in which I walk is NOT okay. They hurt. Please don't make them.
  3. Jokes about the way I look when I walk is NOT okay. They hurt. Please don't make them.
  4. Jokes including the words 'retarded', 'demented', 'cripple', etc. They hurt. Please don't make them.
  5. Speaking for me is NOT OKAY. I have a voice, a damn loud one at that. I'll use mine, thanks.
  6. If you do the above, I will react. Please do not, under any circumstances, tell me to forget about it and get over it. You're telling me to ignore the problem as though it doesn't exist. Why tell me to change? I can't change. I can't change the way I walk, so why don't YOU change the way you talk about it?

For the longest time, I've been making cripple jokes myself. Why? To try and make them funny to me. They're not funny. They still hurt. So I'm not going to keep trying to make them funny just so YOU feel included.

Seems a shame that I even feel obligated to write this post, doesn't it? I'm not going to go over the details of the incident in particular that led me to feeling so disheartened, humiliated and powerless. All I'm going to say that ignorant comments from strangers are one thing. Ignorant comments from peers/teachers/friends? So much worse.

And hey, if you think I'm an attention seeking drama queen, you're probably right. I'm constantly seeking attention for the GOOD reasons. I laugh way too loudly in a bid to make myself feel included in the joke, I post too much on Facebook and try to make people laugh with stupidly dumb statuses so that they might think I'm funny, I wear red lipstick in the hope that it distracts people, I'm trying to make good music (and failing) in the hope that you hear my voice and ignore what you see, and I try so freaking hard in everything I do in the hope that you'll say "I'm so proud of Maddie, she did something great" WITHOUT following it up with "...you know, given her disability." 

Disability is not inability

I've accepted the dumb muscle pains, the dumb curve in my spine and the dumb speed at which I have to climb stairs. I've accepted all that. Am I happy about it? No. Am I going to keep going regardless? Yes. Because I have so much more to offer, and you would know that if you bothered to get to know me.

I don't care what you think about ME. But my disability isn't me, and if you think that for a second then you're wrong. I'm sorry, but you're wrong. 

I didn't mean for this to be a ranty post. I'd much rather keep my blog a vapid, superficial appreciation of all things lipstick. But it's about time that I stand up for myself and stop taking the crap I get thrown my way every single day from every environment I find myself in. I was told I shouldn't study drama because of my condition. I was told that I didn't deserve a disabled park because I didn't fit that person's standard of disabled. How is that fair? 

In this post, I'm asking you to please consider the way you communicate with and refer to people in similar situations to me. You don't know all the details, you haven't felt the physical pain or fatigue, so please don't think you understand.

Talk to me if you're confused. Just talk to me. I'm always open, honest and willing to talk to anyone big enough to actually talk to me. I'm so happy to talk to you about it, to let you get an idea of what life's like. Just give it a go. I won't bite. I'm just like you, just slower. And sassier.

Thank you for reading this, and I promise to go back to my boring, sassy, pun-loving self ASAP.

xx Maddie

 

P.S: Yes. I drive a car. I drive an automatic. I drive it like other automatic drivers drive their automatics. Reverse parallel parking sucks, but that's no different to anyone else, really. While I appreciate the interest, me driving is NOT a miracle. Let's get over that one, shall we? Over it? Okay. Cool. Good. Lovely. Now let's go get a burrito.