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A page of a book, half in shadow.

Image: Ehud Neuhaus, Unsplash

If you are, or ever were, a Harry Potter fanatic, 2007 was a big year. It was the year that Potter fans across the globe were waiting for. The countdown to 21 July was on. My copy of Deathly Hallows was pre-ordered, and the theories about hallows and horcruxes and who would die were flowing like butterbeer at the Leaky Cauldron.

In the lead up to this most anticipated July day, strange things started happening to me. No, unfortunately, I couldn’t suddenly speak to snakes, and no strange letter from an unknown school arrived to tell me I should purchase a wand and catch the train from platform nine-and-three-quarters. Things did start disappearing though.

Worksheets I used to have no trouble with at school suddenly became almost impossible to read. I started running into things, and people, with somewhat alarming frequency. The people on TV became blurred shapes. My parents asked repeatedly whether I was okay, constantly on the alert because they’re my parents. It’s what they do. Especially those of a child born with a ‘disability’. I had always been visually impaired, but had enough sight to read regular-sized print and get around without a mobility aid. Up until this point, my condition had been relatively stable. I’d tell them I’m fine. It’s nothing. I’m just a bit careless. Because that’s what I wanted to be true. I was thirteen; I had no view of the long term consequences. Mum and Dad said they believed me. Looking back now, I’m not sure they ever really did.

The moment that made all of us stop and think maybe the problem was something serious that should be dealt with and not ignored until it hopefully went away, came thanks to our good old friend Harry and his heroic quest to vanquish the Dark Lord. I barely slept at all on the night of the twentieth of July. Perhaps it was anticipation, or perhaps I had some inkling that something wasn’t right, a subconscious knowledge of what would slap me right in the face.

Perhaps it was anticipation, or perhaps I had some inkling that something wasn’t right, a subconscious knowledge of what would slap me right in the face.

Mum and Dad took me to the bookshop where my pre-ordered copy awaited my greedy hands. The air was heavy with wonder and anticipation. Delighted squeals and squeaks rang out. I was sick with nerves. The book was placed reverently in my hands by the shop assistant and I clutched it feverishly. My mum took a peek at the last page while the shop assistant and I covered our ears, crying out that We don’t want to know anything. Nothing!

I opened my book as we left the shop and peered hungrily at the pages. I squinted. I strained my eyes to look as hard as I could. I could see black squiggles on the page, but nothing made sense. I couldn’t form the black smudges into recognisable shapes, letters and words and felt the worry radiating off my parents. They tried to act casually unconcerned. I snapped the book shut and claimed that the publisher must have changed the font size. That must be it. It’s the only possible explanation. When we arrived home, I rushed upstairs to grab my copy of The Order of the Phoenix, dread growing like a philosopher’s stone in my stomach. I held the two books up next to each other and showed my parents. I’ll prove it to you. By this point I was desperate and they were defeated, but humouring me. I flipped the books open and stared longingly at the pages. There they were again. Those dastardly black smudges. The words that had been so clear to me not one year previously, were now as indecipherable as ancient runes. I dropped the books to the floor and burst into tears.

*

The next few months, and years, were filled with doctors’ appointments, specialist consultations, procedures, and quite drastic operations to try and repair the damage. But it was too late. Things just got worse and worse. Everything was tried, to no avail. I was left with no sight. When that fight was lost, a new fight began. The fight that has become the rest of my life. The fight that I continue to fight, and will continue to fight, every day.

The fight to not be ashamed: for being different; for needing to ask for help or special consideration; for sometimes taking longer to do everyday tasks; for not being or feeling the same as I used to; for bursting into tears and having a minor breakdown when I can’t get the fucking cupcake mixture into the fucking paper cases without making a fucking mess, and really how hard is that?

The fight to be okay with being different.

The fight to do whatever the hell I want. Whether it’s climbing onto a top bunk at school camp, taking a role in a school production or going places alone, I’ve always had to prove myself. Fight tooth and nail against people who have a lot more authority than me. Beat down the door until the powers that be notice that I’m not an infant, not an invalid, I’m a capable human with wants and aspirations and ambitions, who has every right to explore every avenue open to me and many that are not.

Whether it’s climbing onto a top bunk at school camp, taking a role in a school production or going places alone, I’ve always had to prove myself.

The fight to not be shoved in a box. From the people who expect me to be kind and meek and helpless. To the ones who expect me to be out there inspiring the world. Those who assume my likes and interests, that all my friends are blind, that I am a lover of braille and goal-ball, that I have no interest in fashion, that I don’t enjoy movies or television, that I am a super-brain, savant, prodigy, that I lack the mental capacity to string two words together, that I am some sort of goody-two-shoes over achiever, that I have no social life. The list goes on. It is exhausting.

The fight for access. Chasing people up when I still have no textbooks and a course is half over. Emailing customer service at a streaming app three times, because I just want to watch a movie but their new update is totally inaccessible, and never hearing back. Not being able to put on a load of washing because the new machines all have touch screens. Having someone else fill out personal forms for me because in this age of technology they cannot possibly be provided electronically.

The fight to not always be an inspiration, a role model, a poster child. I didn’t sign up for this. I didn’t choose it. So what makes people think I want any business in promoting the brand? I just want to live my life, have a good time, sometimes do stupid shit, and get on with it, without being scrutinised by a shocked public. I’m here for myself. Not for someone else’s idea of what I should be.

I didn’t sign up for this. I didn’t choose it. So what makes people think I want any business in promoting the brand?

The fight to get away from the strangers who feel they have the right to help me, touch me, talk down to me. I am not loving the pity party that the world seems to want to constantly throw me. I have to continually pull away from strangers who grab me and try to direct me, because I obviously can’t actually know where I want to be going. Yet, I must be polite about it, lest I offend the stranger who has decided to invade my personal space. I have to constantly speak up when people ask questions about me to whoever I’m with. Does she want sugar in her coffee? Would she like to pay with cash or card? I don’t know… maybe she would like to teach you – a lesson about manners.

The fight to never let my frustration show. I constantly bite my tongue, try not to be too harsh, keep some semblance of calm in my tone. When I am forced to argue with somebody about whether I know where I’m off to, reassure a woman who tells me she is going to tie my shoelace that I can manage it myself, confirm for somebody that I’m working with that, that I can indeed watch Netflix. There is a constant struggle not to roll my eyes every time somebody tells me I should be patient because some people just don’t know better. Has it ever occurred to anybody that this is the part that is most frustrating? That the fact that people don’t know better and feel like it is their place to make assumptions about me and my life and what I am capable of is the most agonising part of my existence. That it is up to me to constantly educate the sheltered public is eternally annoying, and not something I take any pleasure in. Maybe I just want to sit on the train and listen to my podcast, fantasise about a boy in my Italian class, brood about life, and not be expected to educate someone on the appropriate etiquette to observe when dealing with a blind person. I do not exist to be a teachable moment. I have better things to do.

I do not exist to be a teachable moment. I have better things to do.

The fight for my right to simply exist without being questioned. I am asked how I can use the words watch, see, look? People tell me, You don’t really think you can have kids do you? Oh, they say, You go to university do you? Do you need help? Are you lost? Are you sure you can manage that? Is this person your carer? All said in a condescending tone that makes me want to rip their eyeballs out and see how they like it. In fact, I do ‘look’ for my phone when I leave it somewhere stupid. I ‘see’ my friends on Friday night. I could have kids if I wanted to. And yes I go to university. I finished in the top five per cent of the state in year twelve, actually. But really…none of that stuff is any of your business. If I can’t manage something, or I’m lost, I’m capable of asking for help. So, if I’m just casually sitting on the bus, I probably ended up there on purpose. No need for the inquisition. Do you know where you’re going? I want to scream at them.

The fight to deal with my blindness in the way that works for me. Yes, I have a sense of humour. No, I’m not using jokes as a coping mechanism. I just think jokes are funny. Yes, I am capable and awesome and get on with life. No, it isn’t always fine. Some days I want to curl up in a ball and give up, because the society we live in likes to make life stupidly difficult for anyone who is a bit different. Not white? Not straight? Not neurotypical? Not able-bodied? Okay then, let’s just make certain you need to work three times as hard to be on an equal footing with the people around you. And when those with the advantages chastise you for trying to put yourself ahead of others by asking that things be made accessible for you, try not to scream at them when you’re reassuring them that all you want is equality, a chance to have the same shot as anyone else. It’s not nice. But don’t worry. It’s character building.

Yes, I am capable and awesome and get on with life. No, it isn’t always fine.

If I could go back in time to 2007, and give thirteen-year-old Olivia some advice, I’d tell her not to do anything differently. I might mention that she’s a fool for denying that anything is wrong. I might tell her to speak up when she’s struggling a bit more, so that maybe people would know what was wrong and teachers would not just assume she’s lost her work ethic all of a sudden. I might tell her not to back away from things, not to retreat from life quite so much. But she is me, so even that stage doesn’t last for very long. Most of all though, I’d tell her that what she is doing is brave. Keeping on with all the things she loves, being the same sarcastic brat she’s always been, it’s all good and strong and brave. I’d tell her there will be challenges, endless tests of her patience and positivity, but she has the strength to deal with them and move on. I’d tell her that it’s okay to make mistakes, and not to dwell on them when she does. To not bother with people who don’t want to bother with her. To not give a crap what anyone thinks, listen to her parents, and not, under any circumstances, to read the Harry Potter play that is released in 2016. It might sound cool to thirteen-year-old Olivia, but it is completely atrocious and she definitely won’t like it.

Thirteen-year-old me doesn’t really need my advice though. She is a Gryffindor. She is a fighter, a joker, a tough girl who can be oversensitive at times. All of her experiences have made me, as an adult dealing with people in the real world, able to keep fighting. Rise up and fight back every time the world tries to force me down or put me in my place. She is awesome, a regular Neville Longbottom – not that she would appreciate that sentiment just yet.

She made me, and I thank her.

*

An extended version of this piece appears in Meet Me at the Intersection (ed. Ambelin Kwaymullina & Rebecca Lim), out now from Fremantle Press.

Contributor Ellen van Neerven will discuss her piece in the collection at Bargoonga Nganjin, North Fitzroy Library on Saturday 8 September, and the collection will be launched at the Wheeler Centre on Tuesday 11 September.