Nutritional Nutters.

Some would say that completing a degree with a disability is quite an achievement, but as a Millennial even the greatest of achievements pales in comparison to the terrible flaws displayed by my generation that will surely be the end of society itself. People will always find faults if they are looking for them and as such, it has been made apparent to me that being disabled with any sort of medical knowledge is completely incompatible, because surely everyone with this knowledge is in perfect health all of the time and would cure themselves with their knowledge should they fall ill.

Approximately a year ago I was diagnosed with iron deficiency anaemia, which I have since recovered from. At the time the response I invariably received upon revealing my deficiency to someone was, “but I thought you were a nutritionist”.  The truth was that a tablet I was taking limited the absorption of iron in the intestine and despite my dietary iron intake being perfectly adequate, most of the iron was quite literally being flushed down the toilet. Of course, despite the fact that I have spent three years and thousands of pounds dedicated to the subject, the person I was speaking to knew far more than me having read about it on Wikipedia, and I was just making up excuses for being a poor nutritionist. Just about anyone with any medical knowledge or experience in a clinic will roll their eyes at this point; while I can hardly criticise using the internet, because well… I’m on the internet, it can be the bane of our lives.

The same logic has been applied to my disability; admittedly there are a few dietary tricks that can help maintain energy levels throughout the day, but certainly there is no scientific evidence showing a particular diet that will immediately cause me to leap out of my wheelchair completely free of disease for the first time in years. The closest I ever get to feeling like that is when someone offers me chocolate cake, because although I know the many ways in which cake could potentially kill me, I like cake, particularly the chocolate kind. The fact that I am chronically ill is frequently used to evidence my incapability in my chosen field, which is almost as annoying as receiving a smug look before being told nutritionists shouldn’t eat chocolate cake. Why this would apply specifically to nutritionists and no other human being on the planet is beyond me, but clearly I know only that I know nothing.

There is also one deep flaw in the thought process behind such accusations; nutrition is very rarely used as a cure, but is actually used to treat a disease or manage symptoms. Ask any diabetic this and they will confirm that no matter how many visits they have with a dietitian, altering their diet will not make their pancreas behave itself, merely managing the consequences instead. Likewise I use nutrition to help me manage the symptoms of my condition, not to cure it. By my albeit somewhat biased logic, this makes me an even better nutritionist, as I have experience in altering the diet to suit my needs while still satisfying my cravings for chocolate cake. It is by stating that nutrition rarely cures to people I deem to be “Nutritional Nutters” that I return their self-satisfied smugness, in a dish that is far more nutritious when served cold.

School, Sickness, and Stupidity: Part 2.

Outside of school I had progressed to using a manual wheelchair, and I requested permission to use my wheelchair in school. After three months of arguing that they couldn’t accommodate another wheelchair on top of the few wheelchair users already at the school they relented; I could use my wheelchair on the school premises but was refused assistance to push the wheelchair, and access to the disabled toilets. They claimed this was because the paperwork that would allow them to assign me a care assistant wasn’t in place, despite having initially claimed that this paperwork was not essential to receive support. I had to rely on my peers to push me around school and I became a job that needed doing, losing friends.

As my final GCSE exams approached I requested special conditions to accommodate my illness, such as a scribe and extra time to compensate for the pain I endured when writing quickly. The first set of exams had been and gone before the school even dealt with the paperwork and eventually it was decided that I could have extra time, but not a scribe. I was also refused a room apart from all the other students and this meant that I had to sit in the main hall while the others exams were collected, being called names and having things thrown at me because of my “special treatment”. The incessant chatter of all the students who had finished their exam was so loud I couldn’t concentrate, rendering the extra time almost entirely pointless. By the time I had completed my exams I couldn’t get out of the school fast enough.

It was during that summer break that I attempted suicide.

I relinquished all responsibility for my education, leaving my mum to pick up the pieces. She searched for other schools or colleges where I could sit my A-levels but either their courses were already full, or they weren’t accessible. Left with no choice but to return to the same school mum decided to speak to the head of the post-GCSE team.

How mum managed it I don’t know, but when I returned in September I had a carer to push me around school, access to disabled toilets, and was permitted the use of a separate, quiet room for exams. What I do know is that mum had to attend many meetings and sit through many heated discussions. She presented medical evidence from the doctor and the physiotherapist, she showed them how it was physically impossible for me to push myself in the wheelchair, and she spoke with the most senior members of staff at the school to force their hand. I was denied access to hydrotherapy, one of the only medical techniques that genuinely helped me, which was offered to every other disabled student at the school. I was still denied a scribe for exams, but I was too relieved that I wouldn’t have to sit my future exams in a room full of hatred to complain.

We were denied access to transport to get to and from school and since dad was working and mum was sick, we had to rely on local friends to push the wheelchair. I was told that no one at the school was insured to push a wheelchair off the premises and they refused to help us, while still demanding my attendance. One of the teaching assistants noticed my plight and told the administration team not to be so stupid; eventually she took to pushing my wheelchair off the premises, insured or otherwise.

Inside the school some of the carers were excellent. Some were not. I was regularly late for class because carers failed to turn up on time, if at all. Approximately once a week I would be left in the disabled toilet while my carer wandered off to have a break, and I had to sit there until someone noticed me waiting. When I spoke to the head of the care team about this, I was reminded that there was no official paperwork saying I needed support, and therefore all support could be withdrawn quite easily. My silence on the matter henceforth was for fear of what support might be relinquished otherwise.

Since I was studying the sciences, practical work and experiments were inevitable. The school argued that they were not insured to provide support in these cases, and that meant that I was expected to walk around a laboratory doing my own experiments. Fortunately these were not a frequent enough occurrence to cause me major issues, and soon enough my teachers began to provide what support they could while simultaneously keeping an eye on the class.

It was also expected that students stay behind out of school hours for extra study, and those who didn’t were penalised. However care support did not exist outside of official school hours, meaning I was expected to attend extra-curricular activities alone, including on one occasion an assessed chemistry experiment. This resulted in further exhaustion and pain but I could say little to those managing the special needs department out of fear.

Finally I managed to gather the funds to buy a second-hand powered wheelchair, giving me the freedom to travel to and from school myself. I still needed a little help getting around the building, but I was not as heavily dependent on this as before. Given my past experiences I did not ask the school permission to use my powered chair, but simply turned up in it. They couldn’t turn me away without the attendance team tearing them to shreds.

By the time my school days drew to a close I was so sick of the place that I would have given anything to leave. On results day I was so relieved to know that I would be progressing to university that I almost cried. I went and said good bye to the students and members of staff who had helped me, and ignored those who hadn’t.

It is perhaps no surprise why leaving school was one of the best things ever to happen to me.

School, Sickness, and Stupidity: Part 1.

It’s been a while since I left school and I still don’t talk about it much. There’s far too much raw, pent up emotion for me to discuss it coherently, but writing it all down should allow me to give a logical account of my experiences.

My secondary school was situated at the other end of the road I lived on and was just visible from my parent’s bedroom window. It was set on quite a steep hill meaning that one side of the school had an extra level built into the hillside, and it had a central forum where large gatherings and assemblies took place, with all the classrooms built on a loop surrounding this. The school opened just as I transferred to high school meaning it was brand new; the old, dilapidated school it had replaced was being knocked down a few metres away from the shiny, new building.

I was half way through Year 10 (USA 9th Grade) when a virus decided to chow down on the protective tissue surrounding my brain. Given that our GP’s surgery was closed for the day and no other medical aid would physically come to us unless my condition grew significantly worse, we couldn’t get proof that I had, indeed, suffered such a serious illness. Unsurprisingly the school was skeptical as to my plight without the necessary proof, and stipulated that I still sat my GCSE biology exam just one week after first falling ill. The school also stipulated that I wear my uniform, including the stuffy and uncomfortable blazer, but assured my mum that I would be provided with a well ventilated room and access to drinking water.

A couple of days after first falling ill I started to revise as much as I could, which in all honesty wasn’t much. I felt so rotten I don’t think I took much of it in anyway. Come the day of the exam I hauled myself out of bed early, ate a little breakfast, pulled on my uniform, and went to school. I was put in one of the hottest rooms in the building where none of the windows opened, and I wasn’t even allowed to get water from the tap outside. To make matters worse another girl sitting the same exam had also been ill, and therefore was in the same room as me. She turned up extremely late without her uniform and I was made to wait to start the exam until she arrived. All I remember of the paper is wanting to use it as a pillow for my aching head and stumbling out over an hour later wanting nothing more than to be left in peace.

Another week of bed rest later and the attendance team at my school were ringing up constantly, nagging my mum about my absence from school. Over the phone the doctor had advised I take several weeks off to rest following the meningitis, but without the note our case would not be heard. I was pushed back into school on a part-time basis while the attendance team continued to pressure me and my parents until I was back full-time. This included participation is both sports and dance classes despite my mum trying her best to make them see reason.

A couple of months after sitting the exam the results came out. I had obtained a grade B, which I was pretty pleased with under the circumstances. Unfortunately a grade B was below my target grade and as far as the teachers were concerned, this was inadequate. It was quite the fight to prevent being entered for a resit of the exam, and being told that my best efforts under adverse circumstances were worthless did nothing for my self-esteem. I felt like my entire life was falling apart around me into an irreparable mess and nearly everyone was against me. I tried to put it all out of my mind and concentrate on my future exams, keeping my head down and staying out of trouble, but this was harder than I could have imagined.

Shortly after receiving my exam result I was pulled to one side during a gym lesson for a “quick discussion”. What followed was a lengthy and entirely one-sided lecture on how it didn’t matter how academically gifted I was, being physically ill would render it all pointless. She then told me to start running on the treadmill, not walking. Had I been the more confident individual I am today I would have reminded her to have her quick discussion with Steven Hawking and see what his reaction was, but I just nodded mutely and did the bare minimum that would qualify as running to appease her. I think this was the point where I started to truly hate school.

Eventually the summer holidays arrived for which I was grateful. Over the coming weeks I regularly saw the GP, running tests until I was finally diagnosed with Chronic Fatigue Syndrome (CFS). Now backed up with medical evidence I was finally allowed to drop dance and sports, but it took a further six weeks to convince the school that my timetable was still too much for me to cope with. Eventually I was allowed to drop French and I was on a timetable that I could manage while I was so ill. Even so I still had to take some time off school due to illness, made worse by the stress of the constant hounding from the attendance team.

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.

Recieving degree.jpg

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.

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 education 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 that 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 all 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 illness has always been harder to cope with than a loss of 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.