One Good Turn.

It was a dismal day in late October, and the drizzle had soaked me from head to foot as I travelled into town. The light was fading quickly, and the temperature falling even faster. There was little doubt in my mind that the first of the winter’s frosts would develop overnight.

I turned left onto a bridge crossing a main road. People were passing across the bridge in droves, it being one of the busiest routes in and out of town for pedestrians. To one side, huddled beneath the railing, was a homeless man. His thin and worn blanket gave little protection against the cold, and every possession he had was dripping with rain water.

Nearly everyone on that bridge saw the homeless man, and nearly everyone carried on walking anyway. I’m sure they had their reasons. However, for whatever reason, I just couldn’t go past him and leave with a clear conscience.

I had a flapjack in my handbag, which I’d been planning to eat upon returning home. I reached into my bag and handed it to him without making a fuss. It wasn’t a big deal; he had far more need of it than I did. He looked up and thanked me with such genuine compassion it took me by surprise. We exchanged a few short sentences, and then I set off again, thinking nothing more of the matter.

A couple of months later, I was at a Christmas event serving free mulled wine and mince pies, which was inevitably crowded. Among those in attendance were several homeless people, who the staff welcomed along with everyone else.

I was struggling to navigate through the crowd, most of whom completely ignored me if they were even aware of my presence at all. I came to a heavy door, which I struggled to hold open as I tried to pass my wheelchair through the narrow gap without hitting anyone. Clearly someone had noticed my predicament, because I felt the weight of the door taken off my wrist. I looked up to thank the person holding the door open for me, and to my surprise and genuine delight, I recognised the homeless man I had helped before. He simply said “one good turn deserves another”, and then he was swallowed up by the crowd.

A couple of years later I was sat in a bar with a good friend, when the same homeless man walked past us and nodded at me. Naturally, this led to me explaining what had happened. When I’d finished speaking, my friend laughed and called me “the Good Bradfordian”, à la the biblical parable.

***

When I was a child attending Sunday school, the parable of the Good Samaritan had always confused me. It seemed to me to support basic racism, because we are repeatedly told that certain passers-by were expected to help, and that the Samaritan wasn’t, simply because of where he was from. I didn’t understand why being Samaritan excluded you from the expectation to help, nor why being from elsewhere guaranteed your help.

Similarly, the story also suggested that it was a good idea to help people because you would be rewarded, and the richer the rescued person was, the greater the reward. I failed to grasp why a motivation to do the right thing would be needed, instead believing doing the right thing to be the reward itself.

I expected no reward for being the one who did the right thing. Why should I? Just because I’m from a stereotypically rough city doesn’t mean I can’t help others, and have no compassion for them, and neither does being disabled. I am almost certain the homeless man expected no reward for holding the door open for me, and probably failed to understand why others wouldn’t help me either. I would hope we would be in mutual agreement upon this matter; it is simply a shame he may never get to read this.

Truly Grand.

The telephone in my grandparents’ house started to ring at 7 am on the Sunday of a bank holiday weekend in 1996, and grandad had the responsibility of the answering the call. Once he’d established that it was his son-in-law on the other end of the line, he said;

“You had a baby girl last night, and called her Emma Jane, right?”

Apparently he’d had a dream overnight, in which I was dragged into the world from my comfortable abode, and almost immediately mum had given me a name, which is apparently pretty much what happened. I still don’t think dad has forgiven my mum for that one; he didn’t get so much as a look-in.

Almost 17 years later, grandad was taken into hospital, where it was established that he had a rare and particularly brutal form of cancer, which had remained undetected for many years. Because of this, the cancer had already reached the final stage of its development, spreading throughout the body. No medicine could help to reverse the growth of the tumours, instead merely slowing the growth of the cancer and reducing the symptoms. It was a death sentence.

A couple of years passed, and grandad remained in relatively good health considering the severity of the cancer. I visited him and grandma with my parents whenever I could, and we spent many happy hours sat watching TV game shows, shouting out the answers, and laughing at each other when we got them wrong. We would eat tea together, listen to music, and one particularly memorable time we dug out lots of old photographs of my mum and my aunt as children, complete with questionable 80’s fashion choices.

Eventually, the cancer began to take a visible toll on him. He ended up in a hospice for a couple of months one winter, and after another few months at home where he was visibly weaker, he was taken into hospital. Eventually, he was moved into a care home where he had 24 hour access to nurses and carers, as he was almost completely bedbound, and needed help with most basic daily tasks.

The care home was not as detached and miserable as many people might assume; the décor was warm and homely, and the staff were very friendly. There were plenty of activities for him to participate in should he so desire, including a beautiful German shepherd trained as a pets as therapy dog that he absolutely adored. From his room, he could even see the wind turbines that stand on top of the Pennines in the distance.

The illness clearly caused issues for him; he was in almost constant pain, and struggled to eat and drink. Regardless, whenever I went to see him, he would always ask how I was doing. He was proud of my achievements in education, and encouraged me to continue with my work in spite of my own illness. He somehow kept a friendly and positive attitude, and managed to genuinely care about others, in a situation where many people simply retreat into themselves and lose interest in those around them. It may sound clichéd, but his attitude to life in the face of adversity has helped me to shape my own actions.

The last time I saw him, he was so weak that he could barely hold his eyes open, and his speech was a quiet, almost incomprehensible murmur. I could see he was tired as he had already had a lot of visitors that day, but he still made the effort to inquire about my life. Before I left, I squeezed his hand, which had been hanging limply off the side of the bed.

Over 20 years after that initial phone call, on the 20th December 2016, I had a dream that grandad had gone in the night. When the phone rang mere minutes after I woke up, much like grandad so many years before, I didn’t need to be told the news.

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To See, or Not to See?

In the past few trips we’ve made into town, Jarred and I have noted a shift in behaviour that contradicts my “invisibility cloak” experiences; people are now able to see me. This is a massive breakthrough in the way disability is perceived by society, a bonus that cannot be ignored. Unfortunately, their actions towards me have not changed, and I still experience doors being shut in my face, and people stepping over the front of my wheelchair on a daily basis, even when I’m visible.

At first it confused me why people would do this, but then I had an epiphany, albeit the most boring epiphany ever described in all of history. People are impatient.

I’ll be the first to admit that when patience was given out, I was at the back of the queue, impatiently tapping my foot on the floor. Given that at the time I wasn’t disabled, I couldn’t even pull my usual trick of skipping an entire queue purely because I’m a wheelchair user. This means that when somebody is walking ridiculously slowly down the middle of the pavement, often weaving from side to side like a driver in the British Touring Car Championship, I have to ignore the urge to use my chair as a plough, and act like I have nowhere to be, or nothing important to do.

Although I do earnestly try to be patient, I cannot deny that I find being stuck behind someone driving their wheelchair slowly down the centre of the pavement frustrating too. I know that some people aren’t able to travel quickly, particularly in manual wheelchairs, and I know that I should be far more patient and understanding than I am, but it gives me the pedestrian equivalent of road rage. I refuse to believe that I am the only one to feel this way, especially as I understand the trials and tribulations of using a wheelchair and still manage to get annoyed. This means that, instead of risking being stuck behind a wheelchair user who might be moving slowly, people push in front of the wheelchair to be on their way. Unfortunately, for those of who are able to move their wheelchairs at a faster pace, this results in a few difficulties.

Recently, I was in a local shopping centre, and there was a choir performing Beatles songs to entertain the crowd of Saturday shoppers. Not being a huge fan of The Beatles myself, let alone choral versions of their songs, I drove my wheelchair as close to the shop-fronts as possible, moving behind the crowd that had gathered to watch. At the back of this crowd were three women, two of whom upon seeing me approach stepped forward from their position blocking a shop door (where people trying to exit the shop were getting annoyed) into the path of my wheelchair (which made me annoyed), and I swear there was a Starsky and Hutch style screech as my tyres slipped on the smooth floor, although it could just as easily have been the choir. The third woman gestured to allow me past, looking particularly smug that she had been considerate enough to do so, and I bit my lip before I said something I knew I’d regret.

I wasn’t invisible, and the acknowledgement of my existence on any level shows that society is progressing towards a more tolerant and inclusive way of life. However, it is clear to me that there is still progress to be made, including progress on my account to be more patient with those less able than myself. People like me have to lead by example, so my example needs to change, and that is what I aim to do.

The Writing Days.

After completing my degree at the end of May, I’ve had more time on my hands than someone wearing 15 watches at once. Instead of being the supposedly stereotypical Millennial who doesn’t lift a finger for three whole months, I’ve put a lot of my time into watching movies, which requires lifting a finger to press buttons on the remote. I’ve also been doing some writing on the side.

Contrary to popular opinion, writers are not always lazy slobs. To prove this, I decided to write about what writing for a blog, an international magazine, and also working on other (top secret) projects is actually like on a day to day basis.

Given that I have no set time when I am required to start work, it shouldn’t come as a surprise that I choose to wake up naturally, which usually occurs between 9 and 10 am depending on my alcohol consumption the evening before. Jarred usually wakes up far earlier than this, and by the time I wander sleepily from the bedroom to the lounge, he’s often been playing either Skyrim or Fallout 4 for over an hour. The kettle goes on, and while I wait for it to boil I’ll take my medicines, and grab some cereal. I’m nice, so I make Jarred a coffee as well as myself.

While I eat breakfast, we’ll switch to my profile on the games console, and Jarred will control my character while I boss him around. Once we’ve completed whatever mission we were doing, I get washed and changed into something comfy, and then drift back through to the lounge and allow Facebook to bombard me with notifications. At this point, I also like to browse through the latest articles on my favourite magazines, which I prefer to call “research” rather than “procrastination”.

Lunch is usually a sandwich and some fruit, along with sparkling water and some unladylike belching. Immediately after lunch, I’ll pack my laptop bag, hop into my wheelchair, and take the 5 minute journey to my favourite coffee shop that I can actually get my wheelchair into. I roll up to the counter where they see the top of my head only, and the barista greets me by name.  They then ask if I want a regular Americano with milk bringing to my table. Perhaps I ought to take this as a hint that I spend too much time in this particular café, but I’m a creature of habit.

Fuelled by the sudden caffeine rush, I begin to type. Half the time, I don’t think I’m even aware of the words appearing on the screen in front of me; they just materialise. An hour or so later, I’ll come out of my trance, and return to the counter for re-caffeinating purposes. Then it’s back to work.

As 5 o’clock approaches, I bring my writing to a close, bring my laptop to a close, and head home. I start to prepare dinner, which is usually something simple like a stir fry. Then, I leave the dish washer (a.k.a. Jarred) to do my literal dirty work while I browse YouTube.

Once all the pots are clean and away, the evening relaxation after a hard afternoons’ work begins. This might entail a hot bath including bath salts and a rubber duck, watching films, or playing board games. While I nearly always lose chess and Risk, being a writer gives me a distinct advantage at Scrabble. By 10 o’clock I’m usually capable of 4-letter words only, and my Scrabble prowess begins to decline. Then it’s a case of taking medicines, scrubbing my teeth, and crawling back into bed for another 11 hours. Repeat.

The Final Student Day.

On the 17th July 2017, I woke to sunlight streaming between the slats of the venetian blinds, and was about to turn over and go back to sleep when the alarm started. I wondered why I had put an alarm on for a Monday morning when I wasn’t working, and it took me longer than I would care to admit that realise that it was graduation day. Mornings were never a strong point.

Jarred and me made it onto the university campus by 10 am, and immediately went into the union to collect tickets for myself, my parents, and an additional one I had got for Jarred as he was my “carer” for the day.

Then we wandered through to the back of the union to collect my graduation robe and hood. A porter was directing people to the correct rooms, depending on whether they were taking or returning robes, or whether they were going to watch the graduation ceremony live via a livestream. Without asking first, the porter directed me towards the room for watching graduation ceremonies. Surely someone in a wheelchair couldn’t possibly have obtained a degree?!?

“I’ve just been awarded a first class degree with honours,” I said in a matter-of-fact tone, “and am here to graduate.”

The look of surprise on his face was akin to the expression people wear when I tell them that my disability originated from meningitis; somewhere between Taylor Swift and brain-dead.

“Oh…” he eventually stammered, “then you need to go into this room please.” He ushered me into the robing room.

Putting on the robe was something of a calamity. Long, flowing material has a tendency to become entwined around the motors and wheels of my wheelchair, and I had to be careful not to get it tangled in the seat belt (most wheelchairs have them, I’m not just a really bad driver). As I came out of the robing room, the porter looked so sheepish that I was surprised not to see a yellow anti-sheep-theft tag dangling from his ear.

After greeting a few of my friends and course mates, Jarred and I went to meet my parents. Another period of awkward small talk in the midst of a crowd ensued, and then we were being shown into the Great Hall.

The front of the stage in the Great Hall was weighed down with ivy more plastic-looking than Nicki Minaj’s rear end, and the flowers weren’t much more organic either. I was given a seat on the front row, allowing me quick access for the lift onto the stage when it was needed.

Once everyone was in the hall and seated in the correct places, the next half an hour was spent clapping almost incessantly. I felt akin to a seal trying to earn an extra fish off its trainer. When I wasn’t clapping, I was high-fiving my course mates as they went past upon returning to their seats. Soon, my hands were red and tingling, and given the warmth of the day whilst smothered in black robes, they were sweaty too.

My surname means that I am always towards the end of any such procession, so it was quite some time before another porter was helping me into the lift, ready to ascend to the stage. For the most part, the clapping hid the droning noise as the lift hauled me up stage, but one awkward silence between clapping while a name was read out was broken only by the noise of the lift. Fortunately, it had solid sides, so I don’t think anyone noticed my face-palm.

The porter opened the lift door at the top, and my name was called. I drove across, positioned myself for the obligatory photo, collected my certificate, and returned to what I presume was the loudest lift in the entire world.

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After the ceremony came the free lunch, which was the reason why so many family members had attended, and photos of the whole year group were taken. Then I was driving around, finding as many of my friends and lecturers as I could, posing for photographs, giving well-wishes, and saying goodbye to those I wouldn’t see again.

Once I had done all I needed to, I returned the robe to the sheep-porter (still looking sheepish), and meandered back home through the city centre. In the blink of an eye it was over, I had a degree, a huge student loan to pay off, was no longer a student, and was now expected to act like a proper adult. For all the happiness of achieving what I had, there was also a little sadness that it had come to an end.

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Mum’s left foot is doing the disabled equivalent of a photobomb…

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.

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.