we need to talk... again

this post was originally published on the 16th of April, 2015.

Almost one year ago, I wrote a blog post entitled 'we need to talk'. This post was focused on disability discrimination and the harmful things people do and say to make life just that much harder for people like me. My goal was to educate people and hope that it would make things easier.

It didn't.

It shouldn't come as this much of a shock to me, but I still find myself trying to find the best in people when they do harmful things or say things that are ignorant and harmful. I find myself trying to justify behaviour from children and adults alike, trying to find a way to make it less personal.

But it's been nearly twenty years of trying. And I'm done. I'm done trying to justify the behaviour of others and I'm done trying to be reasonable. So instead of trying to educate you, I'm just going to give you a glimpse of what my day might be like.

When I see a flight of stairs and no possible disabled access, I feel throwing up. When I was at uni once, I parked the car and started walking into the building only to see an 'out of order' sign on the elevator. I walked back to the car and drove straight home. But what if I were to climb those stairs? Well, I could look forward to the super jolly cramps in my muscles, the sharp stabbing pain in my lower back, my shortness of breath and shoulder straining so hard to pull on the rail and haul my useless body up the next step.

Oh look! I've dropped my pen. And there's no one around. Well, if I'm in the privacy of my own home, I'll use my toes to pick it up, hold onto the wall and slowly pull my foot up towards me. In public? No. I'll just have to slowly and painfully bend over and hope that by some miracle, gravity doesn't push me down completely. It'll take a full 30 - 60 seconds to stand up straight again.

Last year in September, I fell at university. What had just been an imbalance caused by a pothole turned into a major injury, as my poor balance and weak muscles felt the weight of my bag and thrust my body, knee-first, into the bitumen. I cracked my tibia, went to the hospital, and was wheelchair bound for weeks. My knee only became bearable again in December.

Today, I woke up to the most horrendous muscle cramps in my legs. I tried the warm shower, tried laying down, tried stretching. Nope. So I tried painkillers and a nap. I ended up losing eight hours of assignment time because my body decided it had had enough. I also missed an assessment group meeting, and though my (fabulous) group members were super nice about it, I'm so mad that I couldn't contribute and pull my weight.

I don't blame people for not thinking twice about accessibility, walking speeds, meeting places, regular food breaks. I'm trained to think about all of these things on an almost obsessive level, because I know that to maintain my health, I have to do the best I can. Heck, I went down to three subjects and extended my degree by a year in doing so, because I just knew that four was too much while trying to work, too.

I don't blame you for not knowing. I blame you for not caring. I'm not asking for a medal, or some exuberant fanfare. I'm asking for consideration, and so I've decided to create a list of things to avoid, much like I did last year, and maybe someone will take notice this time around.

Maddie's list of how not to be an ignorant loserface:

  1. If I can't keep up with you, either slow down or go on your merry way. DON'T even THINK about telling me to hurry up. You don't think I would if I could?
  2. If you see some stairs ahead and no other possible route, offer to help, don't laugh/make a joke/run ahead. These stairs are my Everest. 
  3. If I need to stop walking for a bit to catch my breath and give my muscles a break, I'm going to do it. Please don't try to hurry me up. 
  4. If there's a lack of access, I have a right to complain about it. Why? Because I have a legal right to enter public spaces. Don't tell me to shut up, stop complaining or to just 'let it go'. How would you feel if you walked three stairs and felt sharp twinges in your back for the next five days?
  5. 'Oh my gosh Maddie you don't have to pay for parking 'cause you have a disabled sticker omg you're so lucky lol'. No. You think I like using the sticker? Do you think I like not being able to walk from a regular park without pain? 
  6. Don't make me feel like any less of a human. I have feelings, thoughts, opinions and a voice of my own. You don't have a right to speak for me, you don't have a right to speak down to me. If you do, you are an ignorant loserface and you're probably not worth speaking to.

You'll probably notice that this blog post is much more harsh than last year's. That's because last year, I was fairly easy-going and willing to give people fifth and sixth chances. I'm not anymore. Because I'm exhausted. I'm sick and tired of having to compromise my basic human rights to please others or suit their needs. My name is Maddie, and I am a person. A medical condition doesn't change that. 

I have rights. And I'm going to start enforcing them.

Maddie.

Big mega thanks to all those pals of mine at uni who carry my bag for me or fill up my water bottle when I can't run to the bubbler. You da best. Your love and endless support is wonderful and it means a lot to know you have my (curved and often inflamed) back. Ha.