51. IIIIIIIIIIIIIIIIIIIIIIIIIIIIIT’S CHRIIIIIIIIIIIIIIIIIIIIIIIIIISTMAAAAAAAAAAAAAAAASSS!!!!!!!!!!!

Being the over-grown child in an over-sized pram that I am, it should come as no surprise that I particularly enjoy Christmas. I always have done so and I’m not going to let disability stop me now.

When I was a small child one of my favourite things to do in December was to go and see the Christmas lights displayed around Bradford city centre. The colours and patterns caught my attention, especially the series depicting the “12 days of Christmas” down the steep hill between all the shops. This is no different in Leeds, where the city centre is on my door step (figuratively speaking). I rather enjoy bundling up against the cold and drifting slowly around the streets looking at the lights, and then returning home to a warm drink and a hot water bottle.

Once I had begun to use my wheelchair on a regular basis I decked it in tinsel of varying colours each year, and still do. Wherever I go it seems to make people smile, especially children, so the small hassle of sticking the tinsel on the chair is worth it. Combined with my Santa hat, Christmas-themed earrings, and Rudolph-scrunchie in my hair, I look faintly ridiculous, but no one is going to start bullying some disabled in public so I get away with it.

The majority of my Christmas shopping is done on the German Christmas Market which takes over Millenium Square in the city centre for the entirety of advent every single year. Most of the stalls are accessible, with only one or two having small steps up to them, and the wide open spaces between stalls is relatively easy to navigate. The aura of festivity in the lights, sounds, and smells is infectious, particularly in a light snow shower. One of my favourite photographs was taken at the German market in 2016, complete with my beloved polar bear hat perched on my head. I had to borrow my mum’s scooter because my wheelchair had a flat tire.

Image description: I'm sat on my mum's scooter as my wheelchair was broken at the time. I have my skull and crossbones blanket, my leather jacket, & am holding a cup of hot honey mead in my gloved hands. I'm wearing my beloved polar bear hat and smiling at the camera. It's one of my favourite photos of myself.

Some of the stalls sell traditional German food, including some of the best Frankfurters I have ever tasted, washed down with a warm cup of mulled wine or mead. I have been told that the beer tent is rather nice, but as I’m not a fan of beer I tend to ignore that one. Several stalls are purely dedicated to various forms of confectionary, my favourite being the one with fruit skewers dipped in chocolate. The strawberries coated in dark chocolate are something akin to heaven on a stick. There is even one stall entirely dedicated to fudge in a range of flavours so wide it would bankrupt me to try them all.

Aside from the food there is still plenty to see. Some stalls sell trinkets, candles, and ornaments. Some sell jewellery, bags, hats, and scarves. Others sell hand-made traditional Christmas decorations. There are also two stalls of toys, one with teddy bears in every animal imaginable including a bat, and the other selling wooden toys like jigsaws and building blocks. It’s exceptionally easy to find a Christmas present for everyone on a market so diverse.

As for Christmas day itself, I would usually spend the day in my parents’ house on holiday from school and university. Church is often too much hassle due to accessibility issues so we tend to stay indoors opening presents, listening to music, watching TV, and sharing good food and drink. This year will be different; I will be hosting Christmas in the flat I share with my fiancé. This also means I will be cooking Christmas dinner for the first time, so let’s just say it will be experimental. All the same, it will be great for my parents not to have to cook, and they can still be home in time to watch the Christmas edition of Call the Midwife.

I truly hope you all have a wonderful Christmas.

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 that 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 bed-bound, and needed help with most basic daily tasks.

The care home was not as detached and miserable as many people might assume; the decor 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.

Image description: my grandfather on his golden wedding anniversary, sat on the sofa in his living room. He's holding a plate of food from the buffet and smiling at the camera.

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 through 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 medicine 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 to 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  were going to watch the graduation ceremony live via a live-stream. 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 onto stage, but one awkward silence between clapping while a name was read out was broken 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.

Image description: accepting my degree certificate. My green hood is draped over the back of my wheelchair chair.

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.

Mike and me.jpg

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 ate breakfast, Jarred read the news as if he were in a 1950’s sitcom 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 helping 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.

Alternative Reality.

I suppose it would be unnatural if I didn’t wonder where life might have taken me had I not suffered meningitis and 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 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 while ago I started “Diary of a Disabled Person” and the reception to 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 need an alternative one.