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"You don't know how alone I feel in my wheelchair. You will never know."

The hardest part about being in a wheelchair is that I’m constantly robbed of choice. Now these choices are ones any able bodied person would probably take for granted. See, I do really well in all of my classes. I love to write and read. I listen to an eclectic bunch of music. I love movies and TV.

In all those things, I match with any teenager in most ways right? But the thing is, I happen to have a disability. A disability called Cerebral Palsy for which we know not the cause or the cure. Having CP affects my mobility. It means that I use a wheelchair to get around as my main mode of transport. Having CP affects the way my BODY works. It doesn’t affect my brain or my heart and soul. They work as well as any able-bodied person’s.

It means that this morning to get out of bed, I had to get my mum’s help. It means that every time I want to move from my wheelchair, I need an adult’s assistance or supervision. It means that as a little kid, a lot of people with physical disabilities could really do was watch from the sidelines as others played and had fun, too absorbed in their worlds of make believe as a child should be, to notice that we were being left out.

Stella Young was a fierce disability advocate. Watch her beautiful chat with Mamamia. (Post continues after video.)

There were many kids at school when I was younger (and I’m sure again that this is the experience of many) who would run away because they knew I couldn’t keep up.  That was a little hard to take. It gets harder when there are parents who perhaps, quite understandably, weren’t comfortable with you  being at their houses on playdates. But I didn’t understand that then and it hurt a lot. People freeze when they see a wheelchair. They don’t know what to say, how to treat it as just a quirk. They see it as some scary monstrous machine and fail to see the person who is just like them that uses it.

All throughout my life, people have said, “Hey Hannah we wanted to invite you to this but our place has stairs…” They would never think to ask if there was a way this could be worked around. For the record, there was – my parents were and are still always happy to help me conquer a good old flight of stairs. No one ever asked.

People constantly robbed me of the choice and the opportunity to be just like them. They still do in many many ways. The hardest and saddest part? They don’t even realise they’re doing it. This leads to extreme loneliness which can be absolutely crushing. Let me tell you something about loneliness if you’ve never experienced it – it  hurts. It is like someone takes the air out of your lungs, throws you into the coldest water imaginable and keeps you under there for as long as possible without allowing you to breathe. Then when they finally do let you out, they step on your chest and face as you lie there shivering. I feel this way in fresh waves each and every day because I am left out, misunderstood and sometimes so alone, it’s exhausting.

what it's like in a wheelchair

"I am often so alone." Image: supplied.

Let me give you a scenario. I want you to put yourself in my shoes.  This is a scenario anyone with a physical disability would probably have at least some familiarity with. We ask people about their weekend plans. Everyone starts talking about this party they’re invited to in front of us that they know we’re not. We or at least I sigh inwardly but say, “Oh, that sounds great. Have fun.” On the inside, we’re probably screaming. But on the outside, it’s all smiles.

There’s a few seconds of a slightly awkward silence as it occurs to a few people that we’re not invited. But that’s brushed over. No one says anything about it. They carry on as a mark is added to an invisible tally inside my head. THE TALLY OF WAYS HANNAH (there are a probably a million names that could be inserted into this sentence) IS UNCONSCIOUSLY BEING TREATED LIKE A BUG ON THE BOTTOM OF SOMEONE’S SHOE. The day ends. We go home and try not to think about that party or thing that we’re not doing or missing out on. But, it’s a bit like trying to ignore a gaping hole in your chest. It’s damn near impossible.

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I at least try to keep myself busy. I listen to music, exercise, watch movies, do anything and everything I can think of that might keep the loneliness and the drumbeats of the fact that I have been left out once again from breaking through my skull. Does this sound familiar to anyone? And yet, inevitably, I trek through social media as any person my age does.

I then see the statuses with photos from the party, comments with inside jokes and the perfectly captured and filtered Instagram moments. Instead of allowing our potential anger and hurt to be seen,  most of the time, people like me at least pretend to be polite, happy upbeat, unaffected. I comment on people’s photos with smiles, compliments, positivity. They don’t see the tears that often blur my vision as I write these things. Can you see my issues now? Uh huh. It doesn’t sound very nice does it?

what it's like in a wheelchair

You can't see the tears behind the nice things I write.

So, here’s a few things I want you to know about any person with a disability so that situations like the one I’ve just described stop happening:

1. You probably have a lot more in common with us than you think.

2. We feel emotions just as well as any of you able-bodied creatures. So, think about how what you do and say to us might make you feel if you were us.

3. Give us the opportunity to say yes or no. Don’t just assume that any barrier you can see cannot be broken or worked around. In some situations, we may not be able to participate or come or do whatever it is. But at least, let us know you want us to. Give us the choice and the opportunity to work things out.

4. Don’t be afraid to ask questions. If we don’t want to talk about something we’ll let you know. But personally, I would prefer if you asked because ignorance leads to bigotry. The same goes for you parents. Let your child look at me when I’m in public. Let your child come up and say to me, “Were you (literally) born in the wheelchair? Or what planet are you from? (These are both very legitimate questions I’ve been asked.) Even though you may feel embarrassed and I may struggle to keep a straight face in these situations, I would feel much better if I helped your child learn that disability is okay. It’s not scary or weird. It’s normal.

5. Be aware of my disability but don’t allow it to define what you think of me. Always have it in the back of your mind for practical purposes but please think of me as a human being. Put me as a person first because believe me, when I look at all of you, the first thing that comes to mind is not “Able-bodied.” So why put my physical capabilities first?

I get it. I understand the fear and the responsibility or just the fact that most of the time people my age can’t see further than the end of their own nose. I can be like that too. But I think we as people who are different because of circumstances beyond our control  deserve to be treated like human beings. Everyone does no matter what.

I hope anyone who has ever left me out or anyone else  who has a physical disability out never has to understand what that feels like, either for them or their future children. I can tell you it is the worst feeling in the world and it is my greatest wish that it would stop. We deserve to be treated like everybody else.

Anybody who has a disability didn’t ask for it. We didn’t win some sick and twisted lottery. We just want to play the game instead of being stuck on the sidelines. We just want to be hanging out with people. We just want to be invited to the party. Inclusion is important. Please don’t leave us to feel alone.

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