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.

London Calling: Part 3.

After eating we set off for a pub that is pretty famous among 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 with 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.

Image description: a prosthetic toe found on an Egyptian mummy.

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.

Image description: looking up at the patterned roof in the central area of the British Museum.

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 beside 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 specifically 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, so 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 I was very happy to see a porter standing outside our carriage as we pulled into the train station in Leeds.

Image description: taken from the train window before we set off, looking out over the platforms of King's Cross at another train.

London Calling: Part 2.

That evening I had a bath. The hotel was built over a set of tunnels, one for the trains in and out of London and one for the various tube lines running from St Pancras, the tube station attached to King’s Cross. As I submerged myself in the warm water a train ran underneath us and the water made a strange bubbling noise around me. Having not eaten Mexican food recently I was perplexed, and it took me a minute to figure out what the noise was.

Perhaps it was the fatigue from the long day, perhaps it was the alcohol, or perhaps it was the insanely comfortable bed, but that night I slept better than I had for months. Even the trains failed to wake me, and the rattling of their passing beneath us was strangely soothing. I didn’t wake until the alarm sounded at 8 am the next morning, and while eating breakfast I discussed various futile plans with Jarred for stealing the mattresses.

The morning was bright and sunny and after getting dressed, I leant against the window frame watching the trains rattle past until Jarred was also ready. We made our way to the nearest entrance to St Pancras, but the lift here had been closed without warning. Fortunately,at another entrance a different lift was available, and we went underground. We bought our tickets in the unbelievably stuffy ticket hall, and then hopped on the Piccadilly line to Green Park, which was the nearest accessible tube station to the Science Museum, our destination.

Image description: the view from the hotel window overlooking the train tracks as a tube train speeds underneath us.

We went straight from the tube station to Green Park, and the fresh air was a welcome relief from the heated stuffiness of the underground tunnels. We had coffee at one of a small chain of coffee shops found in central London’s parks, and then made our way towards Buckingham palace.

Once Jarred had snapped the obligatory photo of me in front of the palace we made our way through Hyde Park, along the edge of the Serpentine. The day was warm and soon we shed our coats to hang them off the back of the wheelchair. About half way along the Serpentine we spotted a heron wading through the water, slow and graceful as if it were royalty.

Eventually, we arrived at the Science Museum on exhibition road, adjacent to the Natural History Museum. Here, I met Jarred’s mother and little brother for the first time, and we went to the café in the museum to eat lunch together. Jarred’s sister, who worked at the Imperial College next door joined us for her lunch hour, and we sat together, laughing and joking as if we had known each other for years.

After this, Jarred’s sister returned to work, and the rest of us explored the Science Museum together. The space exhibition had life-size models of rocket engines, the moon-landing station, and even one of the surprisingly small Hubble telescope. Tim Peake even had an exhibition dedicated to him as the first Brit to enter the International Space Station, and the first Brit to undertake a spacewalk. The floor above housed an entire room dedicated to genetics and DNA, where I was able to answer a plethora questions from Jarred’s little brother, who is an aspiring scientist himself. I was in awe of the model built by Crick and Watson to discover the structure of DNA, one of the biggest and most important discoveries of the 20th century. Above this was the environment floor, and after this a floor dedicated to flight. This including model Spitfires, and even a model of the first machine ever to fly.

All too soon the afternoon came to an end, and we were saying goodbye to our family. The sun was still shining as we traveled back through Hyde Park and Green Park, returning to the tube station just as rush hour began to kick in.

Having bought an unlimited travel ticket for the whole day, we were able to bypass the ticket hall in Green Park tube station, instead going straight to the Jubilee line headed for Stratford. While the platform was crowded, we didn’t have to travel far to the raised platform for wheelchair access, and within a minute the strong breeze that announces the presence of a train far before you see or hear it rushed past us. The tube squealed to a halt and we were able to squeeze into the wheelchair space inside the carriage. Jarred clicked the wheelchair brakes on to prevent any inertia-related incidents, and then we were off, howling down the dark tunnels and stopping every few minutes. I felt a little like Katniss Everdeen headed to the Capitol of Panem, except I didn’t have to worry about a murdering contest at the end of the line.

At each stop more and more people climbed aboard the carriage. Soon every seat was taken, as was most of the standing room too. It was easy to identify the regular users of the tube; they were standing unaided in the carriage, looking at their phones or reading a book with their bags between their ankles, swaying gently with the motion. The heat of so many crammed into such a small place was overwhelming and I had to avoid several bags held on a level with my head, but I still had to wonder what all the fuss of the London Underground during rush hour was about, as I had faced far worse before.

Eventually, the train sped into daylight, and I was momentarily blinded after the darkness. Minutes later it came to a halt at the end of the line, Stratford. We left the tube and wandered over to Westfield, the humongous shopping centre over-looking the 2012 Olympic park, where we ate our evening meal.

London Calling: Part 1.

Just prior to midday on the 30th August Jarred and myself made our way down to the train station, a mere 10 minutes down a gentle slope surrounded by shops. I had borrowed my mother’s manual wheelchair which Jarred was pushing as I wasn’t confident that the trains could accommodate my powered wheelchair. We grabbed sandwiches from a café hidden just behind the doorway of the train station and sat in the waiting area looking at the departure board, waiting for the 1.15 pm to London King’s Cross (yes, that is the one featured in Harry Potter) to appear.

Half an hour before we were due to leave we went to the disabled support desk. When booking the train tickets we had also booked a porter and ramp in advance, and I had printed off the documentation to prove this. Once the documents were shown to the porters they happily escorted us to the train, and by 1 pm we were safely aboard. The only fly in the ointment was the woman who had a pram in the space reserved for wheelchairs, who not only refused to move (despite the notices and even the law giving wheelchair users priority to these spaces), but once I had claimed a nearby seat and the wheelchair had been folded up, fretted to Jarred that it would fall on her precious offspring. Her precious offspring then continued to cry all the way to Wakefield, where I was grateful to see them exit the train.

A little over half way through the journey, having drunk a 500 ml bottle of Coke Zero, certain needs made their presence felt. I waited until the next stop before getting up and hobbling the few metres to the bathroom. Unfortunately the train set off just as I was getting up again, and I very nearly ended up flat on the rather sticky floor. I managed to steady myself against the walls of the cabin and then made the short journey back to my window seat.

As I sat down Jarred began to laugh. Naturally assuming he was laughing at me for something stupid like having toilet paper stuck to my jeans (we’ve all been there), I glared at him. Then I realised that he was using his phone to track the progress of our train, and as it turned out, we were passing through the charmingly named “Bitchfield”.

Less than an hour later we pulled into Kings Cross, where a porter greeted us with a ramp almost as soon as the train had come to a halt. We made our way through the impressive train station, which in all seriousness has a dedicated Harry Potter shop, alongside a platform 9¾ complete with luggage rack entering the wall which fans spend hours queuing by just to get a photo of it.

We wandered out of the train station, from which our hotel could be seen. We crossed the insanely busy roads in the pouring rain, and were soaked by the time we reached the reception desk. The lovely receptionist offered us two key cards for our room, not just one, in case I wanted to venture out on my own. Given that I was relying on Jarred to push me everywhere this would have been pointless, but the unprejudiced gesture was very much appreciated anyway.

The room we had been given was perfect, with plenty of room to park the wheelchair, and a bathroom full of grab rails to help me move around. The beds were twin beds because in most cases a disabled person would be with a carer, and it wouldn’t be appropriate to share a bed. Fortunately the beds were pushed together, although on occasion one or the other of us disappeared down the gap between them.

Tired as we were, it seemed a shame to waste the remaining afternoon in our hotel room, and so we made our way to a nearby attraction you may have heard of; the British Museum. It was both free to enter and accessible, although the tent where bags were checked by security guards had wheelchair ramps that were, rather ironically, almost impossible to surpass in the wheelchair. Just inside the accessible entrance to the side of the museum there was an old lift. The first time the lift arrived for us, however, we couldn’t enter because a family of physically able-bodied people refused to budge one inch. The lift being old and slow, it was another 5 minutes before we finally got to enter the lift.

With only an hour or so before the museum closed, we didn’t have time to explore more than part of the Ancient Egyptian display. However, we still had plenty of time to find some impressive artefacts including the Rosetta stone, and this sheep-sphynx that reminded me of my favourite teddy, a sheep named Lamb-da.

Image description: a stone ram in a Sphinx-like position found in the Egyptian area of the British Museum.

By 6 pm we had returned to the hotel, where we made hot drinks to warm ourselves through. After this, we made our way to the only accessible pub in the vicinity – Wetherspoon’s. Having travelled all the way to London, we ended up in a pub we have less than 10 minutes from our flat. One hotdog, millionaire sundae, and Strongbow Dark Fruits later, I was feeling very happy.

Words Without Meaning.

Even as a young child I found great freedom in writing. It was a way for me to escape the bullying I experienced at school and to become immersed in a world different to my own. To be able to sink into someone else’s problems helped me to avoid thinking about my own, but the countless pages I filled with half-developed characters and meagre plots are long gone. They were words without meaning; I knew in my mind where the characters would go and what they would say and do, so I never let anyone else see much of my work. The stories were already told. Besides the escapism there was no purpose to the writing, and as such the joy I found in it soon dispersed.

I find that the pleasure of writing comes not from the putting of pen to paper, but in the knowledge that others will read the words you wrote, will think about them and learn from them, and maybe even be emotionally moved by them. It is this that prompted me to create “Diary of a Disabled Person” and it is this that keeps me filling the pages of notebooks while sat in coffee shops; a perfectly typical writer with a message to send.

This blog is not aimed at those with disabilities themselves, although I am extremely pleased that many disabled people have given me positive feedback and support, which means that I am representing the community well and have avoided offending anyone. This blog is in fact targeted at those without disabilities.

Disabled people know what living with a disability is like; they do not need to be told once again by someone in a similar situation that there are issues in the way disability is incorporated into society. While I accept that disability support groups help some people, I find the culture of a large group of disabled people meeting up to sit off to one side moaning about being disabled irritating; nothing will ever change if the rest of the world doesn’t know that there are issues in need of solutions. Nothing will ever change if we don’t try to integrate with the rest of society. Martin Luther King had the support of the African-American community when he gave his infamous “I have a dream speech”, but the people he wanted to target were the white supremacists. It would be like preaching to the converted; it wouldn’t have an effect.

Those not living with a disability, or not living or working with someone who is disabled, are probably oblivious to some of the issues faced on a daily basis; how could someone be expected to know about something they have had no experience of? It is not a criticism, it is a fact, and I started this blog to address that fact. In my attempts to integrate with society and to preach my message to those who have not heard it, I have made some headway in the battle to fully incorporate disability into modern society. The more people become aware of the issues, the more they will fight back against them and support those with disabilities. Many people discriminate by accident; by not switching on an automatic door or lift, or parking over a ramp. Educating people as to why those things are significant will make an impact on society.

Perhaps, if anything, I’m trying to stir up a little trouble. The good kind of trouble, I might add. I want people to talk about disability. I want people to ask me questions. I want people to think a little more carefully about their actions towards anyone with a disability. If enough people raise their voices the authorities cannot deny hearing us.

I didn’t write this blog to generate sympathy but empathy, and it is this that gives my words meaning.

Ignorance is Bliss.

Despite having reproduced for millennia, humans continue to marvel at the mind of a child and the way it tries to piece together the coalition of chaos that is life. This often provokes brutally honest and usually quite amusing reactions to social situations, which arise from the ignorance of complex societal norms created by adults with the sole purpose to make other’s lives as miserable as their own. A child’s views on disability are no exception to this, and in particular young children will not treat someone in a wheelchair differently to someone who can walk. They also occasionally think we’re mermaids (https://diaryofadisabledperson.wordpress.com/2017/06/10/the-real-mermaid/).

One summer, I was browsing the isles of the local supermarket searching for a birthday present when a little girl with blonde pigtails and big blue eyes tottered round the corner, almost into my wheelchair. She stopped and looked up at me, before asking in earnest;

“Are you poorly?”

I smiled and confirmed this.

“Will you get better though?” she continued.

“Hopefully,” I said in reply.

“And you’ll be able to walk like me?” she asked.

“Absolutely,” I returned.

Throughout this exchange, the blonde woman who I presume was the girl’s mother looked utterly mortified and desperately tried to coax her daughter away. I looked up at her, smiled, and said it was absolutely fine. I would much rather children ask the questions they want to ask instead of staring silently at me, so as to break the taboo surrounding disability. Children are remarkably robust when facing the negative aspects of life, and are rarely as perturbed as we might have assumed. As such, disability and sickness should not be hidden from children, as it is simply a part of real life.

Sometimes, children have wonderful reactions if they see that the adults they are with have blocked the path of a wheelchair. In many instances children have pulled prams, bags, baskets, or even the adults themselves out of the way, allowing me to pass safely. On a good few of these occasions, the adults have even received a ticking off from the children. My personal favourite occurred after a distracted mother let a door swing shut in my face. Her son, a boy of maybe 6 or 7 years old, came back and held the door open for me. His mum called out for him to stay with her in a somewhat irritated tone, and in response the boy told her he’d only tried to be nice, as she had taught him. He then attempted to say it was “hypocritical” without much success, which fortunately broke the ice and the mother relaxed and apologised.

At other times, it has been me who has been the first to speak to a child if the situation calls for it. I remember on one occasion I was in the local park and a girl was riding her scooter down the hill much faster than her dad could walk. Unfortunately the front wheel of her scooter got caught in a rut in the pavement and the girl went headlong over the handlebars, landing heavily in a messy heap. The closest adult to the fall didn’t bat an eyelid and walked past almost as if they hadn’t seen or heard what had happened. As the next closest adult I went to the child to check she was OK and handed her a tissue to wipe her tear-stained cheeks. Her injuries were very minor, superficial scrapes to the skin, but the shock of the fall seemed to be what had upset her. I remembered doing almost exactly the same thing ten years before, on another hill within the same park, and said as much which made her smile. Seconds later her dad arrived, almost out of breath from trying to stay upright on the slightly slippery path. He smiled and they both thanked me before we went our separate ways. It was not that a disabled person had stopped to help that required gratitude but the fact that a person had stopped to help at all, and I fully believe that they would have spoken to anyone else in exactly the same manner.

The ignorance of these children towards the taboo surrounding disability did not bring bliss to themselves alone but also to me as a disabled person, and I can only hope that as they grow and develop their inclusive attitude is unmarred by the loss of their ignorance.