Disability matters.

Last night, I realised I had overdone it. I hobbled back to the bed, sat down, pulled myself up to the bedhead with just my arms working (using legs and stomach muscles hurts too much) and, with shaking hands, found and took a tramadol. Lying there, talking to the Dutchman, I just breathed and hoped it would go away soon. It hurt so much.

Thing is, I spent a week in a wheelchair when I went to the Netherlands to see him. I also used a cane to get around and had to do a lot of sleeping the first two days because moving about was incredibly painful and difficult.

The last time I was in this much pain was when I broke my back in 2012. On holiday in America in 2013, I needed to use a wheelchair for the last part of the day in Universal Studios. I remember being pushed past hundreds of people, and feeling like I was going to be in the wheelchair forever. It was so hard to eat, because I was in so much pain. I felt exhausted and slept for most of the next day.

Since then, I have developed a fear of being in a wheelchair for the rest of my life. Me, 26. The others are worried but not terrified.

That experience in Universal Studios taught me something. I watched people’s faces crease in pity for me, and I had small children stare. I think a lot of them were staring in horror. I look younger than I am. Wheelchairs are for old people, right!? Why is that girl in one!?

The cyst is still there. I’m still in pain, but maybe I get an end to this at some point.

Someone with a permanent, chronic illness does not.

Through being in a wheelchair, I’ve gained a small insight into what it must be like to be permanently in one. What it must be like to be perfectly mentally capable, but have someone stare over your head and ask whoever’s pushing you if you wanted chips or rice with your meal. What must it be like to have someone glare at you when you weakly stand, legs wobbling, to go and use the disabled bathroom- you can stand, surely you’re a fraud! The look on one woman’s face as she sees you laughing with your family and fiancé at your fit, able sister’s amusing antics, because YOU’RE IN A WHEELCHAIR, and you’re young. Why are you not walking!? Lazy cow.

I have it lucky. I can only assume at some point, I will be able to walk properly, to run again, to go to the gym and to actually not be in pain when I eat or go to the bathroom. That will happen for me.

However, for a lot of people out there…

This is their reality.

There are hundreds, thousands of people across the globe who can’t get out of bed in the morning without a carer, friend, or partner to help them. There are hundreds of people who look at the entrance to a building and feel defeated, because they can’t get their chair up those steps. There are people every day who have to patiently explain to intolerant assholes that actually, they have MS, and whilst they can walk a little, they can’t walk the distance through an airport the size of a large shopping centre without collapsing at some point.

 

To anyone with any sort of disability, I’ve been put in your shoes two times now, and, as a usually able-bodied person… I apologise.

Society treats you like second-class citizens. It does not hold doors, build ramps, or ask the right questions. It favours those who can just run back into the shop for that item they forgot. It favours those who look and present as normal, and that’s not good enough.

I apologise for the way people speak about those with disabilities. We are selfish and cruel. We do not ask you what you want or how you feel.

I apologise for the governments who refuse to admit that they do not do enough to help you. There’s few provisions for your physical health and wellbeing, let alone mental health. I am sorry we continue to elect these assholes.

I’m also sorry for how society tried to teach me that somehow, your disability was your fault. I saw examples of shunning and shaming and, luckily, had parents who were good at teaching me that this behaviour was wrong. I grew up with children in the playground who would insult someone with disableist slurs, and learned not to say anything.

I’m sorry I never understood better.

 

Trust me, now I will say something.

 

I am, however, lucky that I have been around parents who wanted to teach me right. I am lucky that they hate discrimination and prejudice. My aunt who has ME is in a wheelchair for we need to go somewhere that requires her to walk a long distance, and I’ve watched her own situations where she could have been really upset. Instead, she’s flipped them on their heads and demonstrated that she can boss this situation.

I promise I will speak up whenever I see an idiot in a disabled parking space. I promise to always address the person in the wheelchair. I promise to get angry when someone blocks the access ramp with a badly-placed item.

Most of all? I promise to listen.

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4 comments on “Disability matters.

  1. manyofus1980 says:

    as someone who is blind, i am so grateful. thank you. you dont know what this means to me. i’m sorry you were put in the position twice of having to use a wheelchair. but it has given you insight. an thats not a bad thing. hugs, xoxo

    • I am actually very touched that my piece of writing got to you. I’m pleased that it meant something to you. An aunt of ours used to train Guide Dog puppies, so I’ve always felt an affinity with anyone who is blind. As a little girl, I always used to hope that I would see the dogs she trained out and about with their new owners.

      I’m so glad I have new insight. x

  2. muffythedramaslayer says:

    I love this! Thank you for putting it so well!

    There was a woman in a wheelchair who started coming to my church years ago. I watched the crowds part around her and the uncomfortable sideways glances. She was my age. I made a beeline for her, because I was just not going to let our church ignore her. And I wasn’t alone – over time she made a lot of friends there. It turned out she had a son the same age as mine, so with playdates and boy scouts and all, we ended up becoming good friends. She never complained that people wouldn’t bother to sit close enough to hear her raspy, whispery voice. She never said a thing about people ignoring her. But I could see it in her eyes, and in the way she appreciated her friends. She was an incredibly strong woman, a real gem of a person. I feel like I was given a treasure in her friendship that so many other people passed by.

    She passed away a few years ago from pneumonia, and I miss her. But I know that one day I will see her in heaven, and when I do, she’ll be taller than me and will probably ask me to go running with her. And she may also walk up to all those people who ignored her, look them in the eyes and ask them why they didn’t bother to talk to her back on earth, just because her body was broken.

    Because inside, where the real person is, we are all just the same, and it breaks my heart that people can’t see past the outside to figure that out!

    • It really upsets me that so many people don’t bother to get to know people in wheelchairs, especially at churches. My dad always used to make a point of talking to anyone and everyone, it didn’t matter if they were in a wheelchair or not. Good on you! It sounds like you had a truly precious friendship with the woman you knew. x

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