The Student Days.

It’s only after I’ve been writing this blog for several months that I’ve come to realise that I’ve never actually discussed what I do on a day-to-day basis. Admittedly, the “day in the life of” trope is somewhat clichéd and overused, and since my daily habits have changed drastically over the past few months, it’s a little difficult to give an accurate representation of what I would deem an ordinary day right now. Therefore, I’ve decided to write what an ordinary day entailed as a disabled university student, and in the future when my routine has settled down, I may be able to tell you what life as a disabled employee is like.

The alarm clicked into life at 7 am, and the sounds of Planet Rock slowly pulled me back to the land of the living. A few minutes later, I would feel the bed springs move underneath me as Jarred hauled himself out of bed, while I remained immersed among the sheets. The kettle was switched on, and I gradually sat myself upright while Jarred prepared breakfast, which he insisted on bringing me while I was in bed (although I didn’t exactly resist). While we eat breakfast, Jarred read the news as if he were in a 1950’s sitcom, but with a futuristic twist; the news was on his phone.

20 minutes, 1 cup of coffee, and a bowl of cereal later, I finally forced myself to leave the warmth of the bed, and wandered over to the medicine cupboard. I’ve got into the habit of swallowing all the pills I have in a morning in one gulp to save time, and very occasionally one would get stuck on my tongue, leaving a bad taste even after I’d brushed my teeth. After a quick wash I got dressed, usually jeans and a sweater or t-shirt, brushed my hair, applied a little make-up if I could be bothered, and pulled on my trainers.

At this point I often sat down at my computer and caught up with all the emails and messages that had accumulated overnight, and then I would nip across to the union to pick up something for lunch.

Lectures often started at 9 am, perhaps 10 am if I was lucky, and the rest of the morning was spent moving between different lecture theatres, writing down my notes as quickly as I could, often compromising on legibility in the process. If I didn’t have lectures in the afternoon, I was meeting with team mates for group projects, meeting with my supervisor for my dissertation, or working in the laboratory. The time often passed quickly while I was kept occupied, and I relished the experience.

By late afternoon I was usually pretty tired, so I would go home, ditch my books and bags on my bed, and head back to the canteen for something hot to eat, reuniting with Jarred in the process. After eating whatever was on offer that night, and catching up on how each other’s days had gone, Jarred and me would return to my apartment, where I would write my lecture notes up neatly. Longer tasks like researching and writing assignments, or things for group work, I would complete at the weekend when I wasn’t as tired.

I had usually finished my work by 8 pm in the evening, when I would have a warm shower, most of which was spent washing my ridiculously thick and frizzy hair, before pulling on the comfiest pyjamas possible, and crashing in front of my favourite YouTube channels alongside Jarred. If we were feeling particularly silly, we would play Snakes and Ladders with all 6 counters that came with the board, adding an element of strategy by having to think about which piece to move to avoid the snakes, and put ourselves in a favourable position for the ladders. By 10 pm I was often yawning every thirty seconds, and so I would have my evening medication (which was too numerous to take in one gulp) and clean my teeth, before crawling back under the sheets. It always takes me quite a while to go to sleep, and my student days were no different as I stared at the digital clock face blinking the seconds away before I had to do it all over again.

Such a routine might sound a little dull, tedious even, and I cannot honestly claim to have enjoyed every single minute of it. However, it is undeniable that every single one of those minutes was worth it, because the rewards were simply too great to be overshadowed by anything.

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Wheels of Fortune: A Short Story.

As soon as I arrived home, I rang my mum, who I knew would be waiting my call. She answered almost immediately.

“Hi mum,” I said.

“Hey sweetie, how did it go?” mum never did like small talk.

“Not well,” I replied, “They turned down the appeal; I’ll only get the lower rate of mobility payments, and nothing at all for care costs. According to the doctor in charge of my case I could choose to use crutches to move around, and a manual wheelchair on bad days.”

“That’s ridiculous,” mum exclaimed, “You did explain that you can’t walk very far on crutches, and that you can’t push yourself any distance in a wheelchair, yes?”

“Of course, mum. They just said I would have to have someone to push a wheelchair on bad days.”

“But they haven’t given you any money for care,” mum sounded as exasperated as I felt.

“Apparently it should be such a rare event that I can simply rely on friends and family.”

“How utterly ridiculous. If they had to live with a disability-“

“I know, mum, I know,” I interrupted her before a long rant ensued.

“So now what?” she asked.

“Well, I can no longer afford payments on my powered wheelchair, so they’ll be coming to collect that in less than a month.”

“Can you try and push for a pay rise?”

“Mum, without a wheelchair how am I even supposed to get to work, let alone get a pay rise? There’s no chance of me being physically able to walk around the office on crutches all day, and my colleagues have work of their own to do; they can’t be my carers.”

“Oh Susie, I wish your father and I could help you out, I really do, but he’s still hunting for a job and his redundancy pay has run out.”

“That’s OK,” I said. There was a short pause, before I asked, “Any ideas as to what I should do?”

“Short of robbing a bank, Susie, I don’t know.”

***

Dave was driving an adapted mini-van hired specially for the occasion, with Sam sat beside him. I was sat in my wheelchair in the back, with the wheelchair steadied on the floor by series of straps more convoluted than the Lord of the Rings trilogy. We pulled up outside the bank, and Dave craned his neck round to face me.

“You don’t need to do this, you know,” he said, “I’ll do it.”

“Are you saying that because I have boobs or wheels?” I retaliated.

“Fine, fine, it’s your money. Got your mask?” he asked.

“I’m in a wheelchair,” I said levelly, “that’s a pretty damn obvious clue towards my identity.”

Dave looked horrified, but Sam was grinning from ear-to-ear, his balaclava pushed back to look like a normal hat.

“Everyone knows that wheelchair users are invisible,” he pitched in.

“Yep,” I agreed.

Dave rolled his eyes, and climbed out of the drivers’ seat. He opened the back door, put out the ramp, and released my wheelchair. I reversed down the ramp with ease, a practised manoeuvre I was very used to.

“I’ll be here when you get back,” Dave leant casually against the open boot of the car and crossed his arms, clearly not happy about my lack of a mask.

Sam and I moved towards the platform lift provided for wheelchair users to traverse the flight of steps into the bank. A piece of paper with the words “Out of Order” was pinned to it, waving in the breeze. Clearly the lift had been out of order for some time, as the paper was dirty, crumpled, and damp.

“Right,” I said to Sam, “the actual disabled entrance is round the side.”

“Sure,” Sam replied.

I traversed up the narrow ramp which had a tight hair-pin bend half-way up, and hit the button for the automatic door to open. As usual, the mechanism wasn’t switched on.

“I’ll get it,” Sam heaved the door open, which due to the rather pointless automation was incredibly heavy and cumbersome.

Once inside the bank we joined the back of the queue, and slowly we moved towards the cashiers’ desk. Aside from getting caught in the tightly weaving line set out by flimsy barriers, this was uneventful, and even boring. After what seemed like an eternity, we reached the head of the queue.

“Next,” a bored assistant said in a monotone voice, “How can I help?”

“This is a stick-up,” I said to the marble panels lining the front of a desk so high I would have needed a periscope to see over it.

“Pardon me, but I can’t hear you,” the assistant said.

“This is a stick-up,” I said loudly. Everyone stopped what they were doing and turned towards me, a stunned silence sweeping the room. I was used to being a spectacle, so this did not perturb me. Sam turned to face the crowd, his balaclava obscuring his face, and pulled the most realistic-looking toy gun we could find out of his back pocket.

“I need £6,000 in cash in this bag, now,” I said, “and nobody gets run over.” I gave the bag to Sam, who put it on the counter for me.

“Very funny,” the assistant didn’t laugh, “now what are you really here for.”

“Gimme the money!” I shouted in my most gangster voice.

It dawned on the assistant that we weren’t actually joking, and she must have hit the emergency button underneath the desk. Red lights started flashing as the alarm screamed, and the doors locked themselves. Everyone started running around like madmen, trying to cram themselves into the offices lining the walls of the bank for safety.

“The money, in the bag, now!” Sam yelled, turning to face the assistant and pointing the toy gun at her.

“That is not real,” she said.

“Wanna risk a bet?” Sam levelled it at her head.

“Yeah I would be, since the armed response team will have real guns to shoot you with on the off-chance that yours is real,” she retorted, “so I suggest you put it down and take a comfy seat until the police arrive.”

“C’mon Sam, let’s just go,” I was disappointed, but I knew when I was beaten.

I put my wheelchair on the highest speed setting, and rushed towards the disabled exit. Since the automatic mechanism wasn’t switched on, the door hadn’t locked. I hurled myself through the door and down the ramp, and headed towards the car, only to find another car parked over the space where the pavement levelled with the road. I could see that Dave was already arguing with him.

“I’ll only be hear a minute, what’s the rush?” the driver was saying, dangling his cigarette out of the window and dropping ash onto the road.

“Move or I scratch your precious car,” I said from the pavement. The driver saw Sam behind me, toy gun in hand, and looked as if he had had an accident that didn’t involve cars.

“OK, alright man, chill,” the driver reversed his car the two feet necessary, and I hurried towards our mini-van.

The ramp was already down so I could drive straight into the vehicle, but then began the complicated business of strapping the chair to the floor. It was a full minute before this was complete, and as Dave pushed the ramp in behind me, three police cars screeched around the corner. Almost before they had stopped moving the officers were out of their cars and running towards us, and were quickly joined by a van-load of officers with viciously barking dogs.

“Stop right there!” an officer yelled.

“The armed response team is only minutes away, so I suggest you cooperate,” he continued, “Now let the hostage go, and nobody gets hurt.”

It took me a second to realise that by “hostage” they meant me. As this sunk in Sam threw his head back and laughed loudly, sending the dogs into a burst of loud barking and growling. The officer who had spoken looked stunned.

“She ain’t no hostage,” our cashier hurried down the steps towards us, almost stumbling in her ridiculous heels as she did so, “She’s one of the robbers.”

The officer opened his mouth to speak, but she told him that it was her who had sounded the alarm before he could ask how she was involved.

“I have no doubt that they were using this poor woman as some kind of protection, almost like a human shield,” the officer raised one eyebrow and glanced over at me.

“She was one of the robbers alright,” customers were now filing slowly out of the bank, and among them was the middle-aged man who spoke. A few officers were occupying themselves by stopping them from leaving the scene, as they were all valuable witnesses.

“Are you?” the officer gaped at me. I figured there wasn’t much point lying, as every witness would testify otherwise, so I told the truth.

“Arrest them all,” he ordered his subordinates. Quickly Dave and Sam were cuffed and placed in the back of separate police cars, while being given the usual spiel about having the right to remain silent. However, I presented a problem; none of their own vehicles were accessible. Even when the armed response team came screeching around the corner a minute later, there were no facilities capable of transporting me in my wheelchair. Thinking on his feet, the officer ordered that I was cuffed, and that a couple of officers drove the car to the police station.

The ride back to the police station took no longer than five minutes as we followed the cars containing Sam and Dave, but upon arriving at our destination my case presented yet more problems. It took ten minutes for the police officers to figure out how to release my wheelchair from all the safety measures, and then they realised that while cuffed driving my wheelchair would be rather difficult.  They tried to push my wheelchair, but it wasn’t designed to be pushed by others, and it was extremely heavy. Eventually they had to settle for my slow and shaky driving as they escorted me into the police station.

The reception desk in the police station was as high as the one in the bank, and yet again I found myself taking to a wall, wishing I had a periscope. After signing in I was escorted to a holding cell down a corridor so narrow it was virtually impossible to fit the wheelchair through. What the people already in a cell must have thought when they heard an electronic whine combined with the scraping of metal on whitewashed walls I do not know. The door of the cell was too small to allow the wheelchair through, and so I had to hobble over to the bench on the far side of the cell bracing the walls, and my wheelchair was taken somewhere where I was told it would be safe. Once the door had been slammed shut, I was amused to hear the sounds of the policemen struggling to drive my wheelchair to said safe place.

That evening mum and dad came to see me, just as I was swallowing the last of something that barely qualified as food. Dad looked bemused and a little concerned, but mum had a face like thunder.

“They’re releasing you on bail until the trial comes round since you didn’t actually hurt anyone or steal any money,” dad said calmly, “but only if you live with us until then, with a curfew, and if you go out alone you’ll be arrested again. Count yourself lucky that this is some kind of wheelchair perk.”

“Oh, and surprisingly enough, you’ve been fired. So now you really are out of money,” mum snapped.

I heard the barrage of whining and scraping that signified the re-appearance of my wheelchair, and an hour later I was lying on a flimsy camp-bed in my parents’ cluttered lounge, trying to get to sleep while being licked by their dog, Ringo.

***

The day before the trial I sat on the kitchen floor and scrubbed my wheelchair clean; they do say that appearance is everything in court. I picked out a matching dress and jacket combination, and made sure that my leather boots had been polished. Outside a group of photographers and journalists lounged on my parents’ garden fence, which was scuffed and dented thanks to all their attention over the past months, much to my mothers’ dismay. I was actually grateful for their media coverage, as my motives soon came to light, and public pressure had forced the reinstatement of my disability benefits, allowing me to keep my wheelchair. It seemed that even after my little escapade, most people felt sorry for me because of my wheels.

For most of the introductory speeches at the start of the trial, I remained lost in my own thoughts rather than listening to what was being said, all the while trying to maintain the appearance of being riveted for the benefit of the jury. The state-provided defence lawyer had advised all three of us to plead guilty to charges of attempted robbery, since there was an overwhelming amount of evidence in the form of witnesses and security camera footage against us.

Once Sam and Dave had been called, pleaded guilty, and been sentenced to a short stint in jail followed by many hours of community service, I went to take my place opposite the witness stand. There was, however, one minor inconvenience. Despite the excessive media attention having taken great pains to emphasise my disability, turning me into the victim of the piece, between me and the microphone where I would confess my guilt, there was a step. When the press saw my plight, uproar ensued as photographers leant dangerously far over bannisters to take pictures of the court stupid enough not to provide accessible facilities.

The following day while lounging in my prison cell I was given a newspaper by a guard who had finished reading it. On the front page was a birds-eye view photograph of me seated in my wheelchair, looking at the step in the court room. The focus of the article was not the fact that I had attempted to rob a bank, but the fact that blatant discrimination still existed in a court of law. The scathing headline summed it up perfectly; “COURT NEEDS TO STEP-UP THEIR GAME.”

Wheelchairs in Academia.

Emma Steer (Diary of a Disabled Person) and Aidan Bizony (The Disability Diaries).

From September 2014 to June 2017, I studied Nutrition at the University of Leeds. One extremely common misconception is that nutrition it is a relatively simple subject to study, with very little hard science to get to grips with. The reality is that over my three year course, I spent many hours in the lectures studying biochemistry and human physiology in great detail, and I used knowledge from physics, chemistry, biology, and mathematics on a daily basis. In addition to the lectures, I also spent a great deal of my time in various laboratories, working on food processing procedures, food analysis, and studying the effects of nutrients on cell cultures.

Much like any other academic subject, the lectures were central to help me understand my course. At first, some of my peers seemed to think that I had been given a place on the course out of pity, but soon learned otherwise when I consistently answered questions correctly, and received high marks for my work. This train of thought is entirely forgivable though, given some peoples’ attitudes to political correctness.

I was provided with an assistant to help me get around the university campus, holding open doors and lifts, moving tables and chairs to accommodate my wheelchair, and fetching and returning books to and from the library. In addition, I was offered support with note-taking, especially as my lectures were intense and fast-paced, requiring a rapid rate of note-taking that produced handwriting something akin to that of a doctors’. However, given that my main technique of learning involves repeatedly writing out notes, I decided to write my own notes in order to help me learn, and simply learned to cope with the ache in my wrist at the end of the day.

Unsurprisingly, it was in the laboratories where I needed the most support. People had to help fetch equipment and reagents, and return them to their rightful places or the cleaning station at the end of the experiments. I was allowed to perch on a rather uncomfortable wooden stool, on the condition that I could still move quickly enough if an accident occurred. Many of these experiments took several hours to complete, and by the end I was usually so tired that I could barely sit upright, despite having all the help the university could possibly provide me with. However, I only ever left the laboratory early if it was necessary, earning the respect of my tutors and peers alike.

By the end of the course I had made many friends and learned many skills. I had transformed from a miserable hub of self-consciousness to a confident and relatively independent scholar with a passion for science and health care. University helped me develop into what I am today, as it does for any other student, regardless of subject or disability.

 

In February 2016, I started an Undergraduate Degree at the University of Cape Town in English and History.  Initially, I wanted to do Law but decided to embark on my passion for Literature instead – something I’m extremely glad I did now that I think about it. While a lot of my old high school buddies spend their types in laboratories or in Finance Lectures, I chose to spend my time debating word-choice in centuries-old novels. I’m happy with what I do. It, too, is one of the few avenues in my life that can be entirely disentangled from disability. Don’t get me wrong, disability is a part of who I am, but I don’t want to be dominated by it all the time.

As much as my field allows me to separate me from my physical limitations, sometimes the campus itself and the ideologies of those around me find a way, as John Keats put it, “toll me back to my sole self.” Granted, a physical disability is bound to bring with it some challenges that mean the experience is different, but I don’t see how the real-world complications should be allowed to creep into my academic life. To think, though, that 150+ year old university built on a mountain must suddenly redesign itself for a relatively small portion of the population who have certain physical difficulties is naïve – particularly when you consider all the other problems South Africa must address.

Regardless of the various difficulties I have in navigating the campus, there are several groups who strive to make the academic experience as separate as possible from the disability limitations students face. For instance, since the campus bus system is not wheelchair accessible the UCT Disability Service arrange alternative, accessible transport so that I do not have to be beholden to friends and/or family to get me to my classes and my classes are taught in wheelchair-accessible venues.

Close to the end of my Second Year and rapidly about to be thrown headfirst into my third and final year, I continue to realise that despite the various access problems and some people’s warped understanding of what it means to be disabled, my disability has not solely been a limitation to me or my fledgling university career. In fact, considering my life-long disability has had a dramatic impact on who I am as a person, the friendships I developed at university (which I hope will remain long after we graduate) have been directly influenced by the fact that I’m in a wheelchair.

Insofar as my disability shaped my interaction with university, I think university has equally influenced my perspective on my disability. Given the largely protected nature of high school, the fact that I am exposed to a wider variety of opinions towards my disability and still can thrive illustrates that while disability forms part of your life, disability doesn’t define you.

Mission Impossible 2: Get Educated.

Ever since I first became ill, I have frequently been advised by doctors to give up my education, right through from my GCSEs and A-levels, up until the end of my degree. I was told that it would only make my health worse, and that I wouldn’t get decent grades or even pass. This advice may seem sensible on the surface, and for some people it works even when they don’t have any choice in the matter, but I found this guidance difficult to accept from people already with a high level of indication, and a nice job to boot. I therefore opted to go against what the doctors said, something I would usually be cautious to do; they’re the experts after all.

First and foremost, my academic performance did not suffer significantly as a result of my illness. I passed my GCSEs and A-levels by giving up less important things like attending after-school clubs or workshops out of term time, and when I started university I moved into catered halls of residence, so I wouldn’t have to cook for myself, saving me energy. I would be lying if I denied the satisfaction I felt by proving the doctors wrong, but in fairness to my GP, he took it lightly and wished me well.

The doctors were right in that my physical health was worsened by my choices. I had no energy to put into the various therapies that people tried to cure me with, and I had far less rest than the ideal. However, as someone who has always become bored quickly, I found that resting gave me time to brood on my situation, and I would very rapidly go from restful to depressed. What my education took from me in terms of physical health, I gained as a boost to my mental health, by taking my mind off the situation, and giving me a positive to focus on. For me, mental ill health has always been harder to cope with than physical health, as there is so little that can be done to relieve the symptoms once a relapse hits. As a result, I threw myself into my work with the force of a hurricane, but burning the candle at both ends drained me of any energy I had so quickly that within days I would be back in bed. It took some time before I perfected the balance between the focus on my education to improve my mental health, and the rest I needed to maintain my physical status.

There was also one other minor flaw in the medical advice given to me; employers don’t see M.E as a valid excuse to have a weaker education and less work experience than anybody else. There should be allowances for such cases, but then, who would employ somebody that would need lots of time off work due to illness over someone else with a curriculum vitae as long as their arm? Perhaps people like me actually contribute to this problem by falling in line with employer’s expectations, allowing employers to think that if one of us can do it, all of us can. Whatever the case, I decided that obtaining an education was best for me under my own circumstances, particularly because after a certain age, even obtaining GCSEs becomes extremely expensive.

Some people seem to think that I’m some kind of badass straight from a movie for going out and getting an education, but the reality is that I used it as a distraction from said reality. The right person could probably make a good argument saying that this was actually an act of cowardice, and I wouldn’t oppose them. Although I did not make my decision to please those who think I’m lazy, it is true that I haven’t exactly stepped out of line with society’s expectations, and the very definition of a badass is someone who defies expectations. Whatever the case, I ask people to respect my decision, as education was simply the right path for me, and the decisions of others should not be based on mine.

Mission Impossible: Go Shopping.

What might seem to be simple everyday tasks for the majority of the population can become Herculean feats with a malfunctioning body, and one of these things is going shopping.

Most modern supermarkets have excellent accessibility around the store; if not, you could hardly be expected to use a trolley. For one thing, they often provided lower tills so that a wheelchair user doesn’t need a periscope to arrange their shopping on the conveyor belt or successfully pay for their selected items. However, there still remain a few issues for wheelchair users in particular, mainly to do with height. The items on the highest shelves are usually completely unreachable, although I have learned that if I sit staring longingly at an item on the top shelf, someone will come and reach it down for me. The prices displayed below each product are not visible to me on the top shelf, so on the odd occasion I may get a nasty surprise when trying to predict how much something will cost me.

Unfortunately, items on the lowest shelves are also difficult to reach, as the sides of the wheelchair restrict how far I can bend over to retrieve and item, and if I try to face the shelf, my feet and legs get in the way. It’s usually a little more difficult to convey that I might need some help because no one can see my facial expression, although I don’t usually have to wait too long before someone comes to my rescue.

The freezers are perhaps the worst offenders in a supermarket; the glass makes it easy to see each tantalising product, but trying to reach over the lip of the freezer to grab hold of the desired product is almost impossible, and my hands grow cold after mere seconds in the sub-zero temperatures. The freezers higher than this present the same issues as the high shelves elsewhere in the supermarket. I could, of course, ask someone for help, but I’m English, making any face-to-face contact with total strangers awkward and uncomfortable.

None of these things are the fault of the supermarket, and there would be little they could do to improve accessibility without massively reducing the availability of products due to the limited shelf space reachable from a wheelchair. However, I can only wish that other shops would follow suit. There are so many shops out there with even just a small step in the door that means I cannot enter, and pubs are often the worst offenders. Admittedly, since many disabled people take some form of medication, all of which state not to drink alcohol whilst taking those tablets, that you could say they were actually being responsible by being inaccessible, although I’m not sure they’ve ever given the issue so much thought. In many cases, only a small and relatively cheap ramp would be needed to resolve the issue, and they would be able to make more money simply by allowing more people into the store.

Unfortunately, even when shops do have accessible facilities, they may choose to misuse them. I have lost count of the shops I have entered that use the disabled changing room as a store cupboard, and have had to navigate the wheelchair around large boxes and racks of new clothing. I also know a shop in a mall, where accessibility is supposedly prioritised, which has a small platform lift next to the three steps up into the main body of the shop. The lift is entirely blocked off by clothing rails and mannequins, and I can therefore not purchase anything, despite having bought lovely clothes from other branches of the same brand in the past. When asked, staff tend to shrug their shoulders nonchalantly, stating that it “wasn’t their decision”, and that “I’d just have to go elsewhere”. This is naturally frustrating, and also a bit demeaning, although it has probably saved me a lot of money.

The shop owners that do make their facilities accessible not just to wheelchair users, but to all those with any kind of disability or other issue that might hinder their ability to go shopping, will make more money than those without access. Effectually this is a classic case of “voting with your feet” (choosing to go elsewhere if the shop in question isn’t good enough), although this statement is perhaps not the best thing to declare in front of a group of disabled people…

A Little Halloween Treat!

I’m just heading out to a Halloween party, and I thought you’d probably like to see my costume. So, without further ado…

Coco Bandicoot, Dr Neo Cortex, and Pura the Tiger from Crash Bandicoot!

Don’t forget; tomorrow morning I release the next installment of my blog!

Alternative Reality.

I suppose it would be unnatural if I didn’t wonder where life might have taken me had I not suffered meningitis, or had I not developed chronic fatigue syndrome (CFS) as a consequence, even if those thoughts aren’t necessarily healthy. Having gone through this thought process multiple times, and having always drawn the same conclusions, I am no longer ashamed to admit that I’m glad it’s all happened. This might seem odd, but I intend to explain myself fully.

Prior to suffering meningitis, I was boring. I lived in a normal house, in a normal family, doing normal things like going to school and watching TV. By no means was that a negative, and those are memories that still mean a lot to me, but I was completely unremarkable. I was terrified of not fitting in with my peers at school, and went out of my way to make myself “cool”, only to start hating myself all over again when I inevitably failed. Some people are born abnormal, and I guess it’s with them that I belong.

Then the meningitis hit like a slab of concrete, and everything I thought I knew was turned inside out. The majority of those I called my friends turned their back at the soonest opportunity, and I found myself unable to forge meaningful relationships with anyone else. It was at this point that I began to notice the stigma surrounding disability, and all the inequality that came with it, and I fell into a deep depression. I tried to kill myself. I self-harmed. I decided that if people would only ever hurt me, that I’d alienate myself from them. I shut myself in my room, listened to music as the artists were the only people who seemed to understand my plight, and threw all my energy into my studies as a distraction.

The day finally came when school was over and done with, and couldn’t have come soon enough. The following summer I had my hair cut shorter than ever before, had my ears pierced, and allowed my wardrobe to develop a distinct gothic vibe. I started university being openly alternative, and introduced myself to all the new people as “Mini”, an old nickname, and my internet persona. I met my best friend, I met my partner, and I found my studies vibrant and interesting. I grew more and more confident, and as I did so, I started to really express myself through my appearance, and then I became brave enough to fight back against the low-level discrimination I faced on a daily basis. A few months ago I started “Diary of a Disabled Person”, and the reception of my writing has far exceeded any expectations I had, however unrealistically dreamlike. In a matter of years I went from a boring wreck to an interesting one.

Had I not fallen ill, I may well have remained trying to fit in with my peers, and may have concentrated on that so hard that my academic work suffered. There’s a good chance that I would have found joy in my music, but not have found it as relatable as I do now, and I certainly wouldn’t have started this blog. I might have never developed the pure passion I have for writing that prompted me to write this brutally honest and perhaps slightly arrogant passage. I wouldn’t have developed the fighting spirit that has dragged me through the past few years, and my rebellious streak may have remained buried deep down. However, all of these things are insignificant in comparison to the other thing I gained; the ability to forge lasting, meaningful relationships, and the confidence to allow someone close enough to be able to see every last little flaw and insecurity without fearing that they would be exploited against me.

Being chronically sick is rubbish, and there are few days when I don’t wake up and think “I just wish this illness would leave me alone”. I will never ignore that, but I cannot ignore the positives either. I’m not being brave, or showing an unbreakable spirit by thinking like this; it is reality, and I don’t want an alternative one.

Rollywood.

I hope you’ll pardon me for the over-use of the “roll” pun, but I’m finding it quite entertaining seeing just how many phrases I can crowbar it into.

Apology aside, let me get to the point; there are a few issues with the depiction of disability in Hollywood. While it is wonderful to see films using more diverse castings to portray characters on the silver screen, and the portrayal of disability is usually far from offensive, there are a few inaccuracies that invariable work their way into the mix.

Take “Avatar”, for example, a film that chose to be a nerd’s wet dream of intricate graphics, over the interesting character development and deep political messages it could have shown. The protagonist is a wheelchair user, who upon the death of his identical twin, is called in to take his place in the avatar scheme. As he enters the military camp for the first time, two soldiers can be heard making demeaning remarks about the wheelchair, referring to the protagonist as a “sack of meat”. I have never once encountered such blatant discrimination; in my experience discrimination is much less obvious, and people may not even be aware that they are doing something that inhibits my ability to access a room, or perform a task. Similarly, I expect that this is not an accurate representation of the way the military reacts to disability, as it is something that can happen so easily in combat that they are regularly exposed to it, although of course I may be wrong.

Another recent film, “The Hunger Games” also fails to represent disability at all, despite it being an important part of the storyline. Those who have read the books will be aware that Peeta loses his leg as a result of an injury inflicted during his first time in an arena. Katniss uses her last arrow to form a tourniquet that, while it results in the loss of Peeta’s leg, keeps him alive. This is completely brushed over in the films, alongside Katniss’s loss of hearing experienced as a result of an explosion that requires expert medical aid to repair, and a meaningful bonding moment between Katniss and Peeta is lost, impacting the later films.

When Hollywood isn’t presenting disability as a cruel and unforgiving circumstance where no happiness is ever felt, it is presenting us as unrealistic super-powered beings with the mental and physical strength of warriors. Anyone familiar with the X-men franchise will immediately realise that Professor X falls into this category, although Patrick Stewart certainly brings a depth to the character that stretches beyond the wheelchair and his mind powers. A more obscure example occurs in “Mr No Legs”; a man without any legs has a wheelchair fully equipped with weapons such as throwing stars, and practically uses the arms of his wheelchair as a pommel horse to defend himself against an onslaught of fully able-bodied men, and the brakes of his wheelchair aren’t even on. While people in wheelchairs are capable of defending themselves to the best of their abilities, it would be completely ridiculous to have a wheelchair so heavily armed that you wouldn’t be allowed to progress more than 100 metres without the police stopping you for a serious conversation. The same goes for wheelchair bombs, which are a clichéd move that I have seen in many films and TV programmes.

Another thing that wheelchair users are not some kind of evil genius who develops a complex theory about disabilities influencing the superpowers depicted in stories and comic books, and to prove as such subjects an unknowing man to trial after trial to highlight his “superpower”. While the plot of “Unbreakable” is much more complex, and the characters far more intricate than I could ever give them credit for in fewer than 1000 words, I cannot deny that seeing a wheelchair user depicted as an anti-social creep with maniacal ideas makes me uncomfortable.

It would be nice to see more movies where a characters disability is not a major plot point, and the disabled person integrates normally with the rest of the characters, as disability should not be the defining trait of anyone, but a mere characteristic. It is no wonder people are uncomfortable and awkward around disability when we are portrayed as warriors and creeps on the silver screen.

The Fifth Bodily Humour.

Recently, I’ve seen the term “mobility fluidity” tossed around the internet like an over-cooked pancake, and in all honesty, I’m still not sure what to make of it. Since me not having an opinion is a rare event, I’ve decided to record the occasion.

The term addresses conditions like CFS or fibromyalgia that fluctuate on a daily basis. One day, an inflicted individual might be able to walk, but the next day they’d use a wheelchair instead. It’s not unusual for someone to label such an individual as a faker or attention seeker (lesser known Tom Jones lyric), and the term is trying to explain this issue.

There is, however, one slight issue. Fluidity can be used to describe someone exploring their gender or sexuality, but I’m not exploring my mobility. My legs are more unreliable than in-flight WiFi, and the rest of my body isn’t much better. That’s all there is to it.

What’s more, the type of people who find gender or sexuality fluidity unacceptable are usually the same type to label someone as a faker for their mobility fluidity. That is a huge generalisation, but hear (or in this case, read) me out on this.

People hear the word fluidity, and they either start discussing Newton’s laws of forces and motion, or they think a liberal is about to start lecturing them. Some will cheer the liberal on, and others will roll their eyes and ignore them. That means they won’t want to hear it when someone uses a word like fluidity in connection with mobility. It addresses the issue, but does nothing to solve it. Admittedly, I don’t have many ideas about how to fix this myself, short of using my wheelchair as a weapon.

The sentiment behind the terms’ development is entirely well-meaning, and while I want to welcome this with open arms, it feels more like trying to swallow a large, powdery tablet. The medical kind, not the electronic kind. You know it will do you good, but right at that moment you are wrestling with the urge to vomit like John Cena against The Rock.

Perhaps the problem lies with those who can’t understand that chronic illness is more complicated than EU politics, but yet another mildly patronising term for them to learn won’t get the concept through to them. I think that, maybe, allowing these people an insight into living with a chronic illness, however embarrassing or uncomfortable that may be, will prove a point. Having written that down, now sounds like I’m blowing my own trumpet. I guess I’m just trying to do the write thing…

London Calling: Part 3.

After eating we set off for a pub that is pretty famous amongst gamers; the loading bar. Various pinball machines lined the wall opposite the entrance, and there were other classic arcade games scattered around the room. On the wall facing the bar was a TV linked to a PlayStation 4, and there was another corner stacked high with various board games. Even the cocktails had game-themed names such as Skyrum. We had arranged to meet up some friends, primarily Jarred’s future best man for our wedding. We laughed and joked with each other, and I watched the others’ playing board games which I opted out of due to fatigue.

We decided to leave as the sky began to darken, catching a much cooler and quieter tube back to Green Park from Stratford. We changed onto the Piccadilly line to St Pancras, during which a woman entered the tube with a very friendly dog called Charles who licked my wheelchair while trying to lick my hand.

Once again I slept very well, and was only woken when the alarm rang. We got dressed and packed our bags, checking out of the hotel a little after 9 am, before returning to the British Museum to see the exhibits we had missed before. The morning was another bright one, but it was significantly cooler, and there was a distinctly Autumnal feel to the day.

When we arrived at the museum, we were directed along a route that surpassed the inaccessible wheelchair ramps, which they were working to replace. It was particularly reassuring to know that the museum staff had recognised the inadequacy of their disabled support, and were actively trying to improve it.

On the third floor of the British Museum, the mummies can be found. I was fascinated by the biochemical processes of mummification, and was particularly entranced by the ability of modern science to be able to determine the diseases suffered by some mummies simply by looking at their remains. As it turned out, the state of their teeth enabled the diet of the Ancient Egyptians to be understood too. I was also amused to find a prosthetic toe found on a mummy, proving that disability has been a problem for many millennia.

Pros[hetic Toe

A few rooms further through housed the infamous Sutton Hoo helmet, one of only four of the delicate and probably ceremonial Anglo-Saxon helmets in existence, and then we came to the hall of clocks. We passed through the darkened room slowly, looking at the wide range of mechanisms used to track time throughout history, eventually arriving at a Sony digital alarm clock, the like of which I had owned as a child. As we exited the room we came to a lovely view point of the museum, and it struck 11 am; there was a cacophony of chiming behind us much like the opening scene of Back to the Future.

British Museum.jpg

After exploring the Aztec and Enlightenment galleries on the main floor of the museum, we went to the old, slow lift to leave. Just as the lift arrived, a powered wheelchair pulled up alongside us. The man in it was exceedingly grateful when we pulled the manual wheelchair over as far as possible, giving him room to enter the lift besides us instead of waiting. I explained that I used a powered wheelchair myself most of the time, and knew just how frustrating it could be. He smiled and thanked us again as the lift arrived at the disabled entrance, and we made our separate ways across London.

We wandered through the streets of North London, making a small detour to buy lunch to be eaten on the train, and arrived at King’s Cross in time for our train. We approached the disabled support desk with our paperwork, and were invited into a quiet side room to wait for our porter. The quiet, calm room was extremely pleasant after the bustle of one of the busiest train stations in the UK, and was designed to help people who were anxious in crowds to unwind before the journey. The porter arrived as promised, and we were helped onto the train well before we were due to leave, and we relaxed into our seats. As we tucked into our lunches, the train began to roll slowly, and we were on the way back to Leeds. I fell asleep for a large portion of the journey, which was uneventful, and was very happy to see a porter standing outside our carriage as we pulled into the train station.

Train