A student starting university is faced with overloading quantities of information about what they must and should do in order to “get the most out of the student experience”. There is a pile of administrative stuff to start; from getting your student card, enrolling on your degree programme, registering with the doctors, choosing modules, learning all the lingo, attending all the introductory lectures and events, aaaaand getting to know your way around the campus (seriously that map will be your BFF for about a month). Then there is all the new and exciting living stuff, like; getting your room keys, fighting over your own fridge shelf and kitchen cupboard, buying your own crockery, cutlery and cooking equipment, not to mention towels and toilet paper, changing your postal address, avoiding the TV license people, learning how to use the washing machine / tumble drier / oven, doing your own shopping, and getting to know your hall-mates. Then there is the heady and seductive combination of seemingly limitless money and access to pubs, bars, and clubs every day of the week. Not to mention the overwhelming sensation of any or all of the following emotions; abandonment, freedom, loneliness, responsibility, excitement, shyness, and the ever-present danger that no-one will be around to help you if you find a spider in your bedroom. This is a lot for anyone to take in, so screw “getting the most” out of the experience and welcome to “surviving your first weeks of fresher’s year”!!

Whilst this is all hugely exciting and terrifying in somewhat equal measure it is nice to know that everyone muddles through somehow, and that tens of thousands of students make this transition every single year across the country. What most of those tens of thousands don’t deal with, however, is adjusting to university life as a disabled student. And I can tell you that I made a spectacular mess of that!! So what follows is my list of what not to do as a disabled first year student, which might give you some idea of how to do a better job of starting your degree than I did.

 

DON’T

1) be in total denial about your health:
some chronic illnesses take a long time to diagnose, and after four or more years of bad health I was finally given a partial diagnosis in the months before I started university. The prognosis was less than encouraging and, though I didn’t realise it at the time, I was in complete denial for a very long time. I simply did not accept that my condition would have any impact on my studies or my career. I would not let it ruin my life, especially when going to university was all I had wanted since I could remember. I didn’t spend one minute considering what I might have to sacrifice or adjust in order to survive living by myself. I only just had the foresight to apply for “disabled” accommodation because my mum was helping me choose halls. I did not register as a disabled student or seek any pastoral help, because I refused to think of myself in that way. My First Term experience will explain why this was a bad, bad idea.

There was pain. So, so much pain. I’d never had to walk so much in my life. There was the daily walks to lectures, to the shops, to the student events, to friends halls. All the while carrying books, laptops, groceries. The library was up a flight of stairs and then another flight inside the building, then you had to walk miles inside to find the books, then carry them back out again. Back to back lectures would be in different buildings on opposite sides of campus, so while everyone else rushed off from one to the other and pounded up the stairs to get there on time, I had to meander my way and then wait for the lifts in both buildings. So I was frequently late. After only a week everything hurt all the time and I spent most of my alone time crying and throwing down all the over the counter medication I could, but it wasn’t enough. So I started drinking. I would start the day with alcohol, drink mixed spirits with my cola during class, spent as much time as possible at the pub – even studied there most days, and drank last thing at night so I could sleep. Alcohol was the only thing that stopped the pain, it was the only way I could think of to keep functioning.

In Week 9 of the first term I caught a flu virus that was going around campus. Three days later the Halls Supervisor broke down my door to find me unconscious, having vomited, urinated, and defecated in my bed because the flu had wiped out my alcohol-filled immune system and drained my body so that I couldn’t even crawl to the bathroom. My phone had died and I couldn’t reach the charger. I couldn’t feed myself and had been hallucinating before I had passed out. It took an overnight stay in the hospital and an embarrassing trip on an ambulance gurney through the halls in front of everyone I knew, before I realised that I needed help. The doctors asked me why I had been drinking so much and I broke down telling them that there was so much pain and I just couldn’t face waking up every day to the relentless agony of it. They raised their eyebrows and said: “you know you can take pills for pain, right?” I was sent away with strict instructions not to drink, and a cocktail of pain meds instead.

The experience also resulted in a trip to pastoral care, where they registered me as a disabled student. They put me on to Disabled Students Allowance which meant I was given a dictaphone so that my friend could record a lecture if I wasn’t there, or so I wouldn’t have to write or carry a laptop to class. I was given an allowance to buy books, and given a printer, so I wouldn’t have to use the library to access what I needed. I was told me that I was under no compulsion to attend all my classes unlike the other students, and that my Disability Advisor would communicate all my requirements with departmental staff so I needn’t feel embarrassed. By the end of my degree I attended less than 60% of my classes.

 

2) fail to look into your accommodation
The requirements for my “disabled access” accommodation were the following: the closest halls to the teaching buildings, en-suite bathroom with bath and shower, laundrette in the building, ground floor room. Which sounds extremely suitable for the needs of a student with mobility complaints. But; whilst my room was ground floor it was also the furthest from the front door, and meant walking back on oneself the full length of the building in the opposite direction of where I needed to go to get to class in order to get out. When it came to spoon-saving, it was actually easier for me to climb out of my bedroom window than it was to walk all that distance. The window was also a better option most of the time because all the doors in the building, including my bedroom door, were fire-safety doors, which meant they were heavy as hell and on most days I wasn’t strong enough to pull mine open and get out of the room. It wasn’t until second term that I got an engineering student friend around to dismantle the mechanism above the door so that I could actually use it. As for the laundrette in the building – which was supposed to save me from carrying my laundry to another building – it was on the other side of the building, past the main door. On the second floor. There was no lift. With stairs my greatest and most hated of enemies when it came to pain, washing my clothes became a daunting and anxiety-ridden experience. Oh, and for the luxury of an en-suite and having the closest building to central campus, I had to pay the highest rent on campus. In other words, in order to be granted “accessible” living I had to pay over £120 a week for my room. There was no subsidy for disabled students.

 

3) be unaware of the full extent of your symptoms
This is a silly one, but after my first few nights I woke up every day with sore, black feet and had no idea why. I thought it must be from all the walking I was suddenly having to do. It wasn’t until a friend stayed over about Week 8 that they asked me why I’d been kicking the wall all night. Turns out I had Fidgety Leg Syndrome, and had been kicking the wall every single night in my sleep. I never knew this because at home I slept in a double bed in the middle of the room. We ended up having to drag the bed away from the wall and cramping up the space in my room so that I didn’t do myself any more damage. A trip to the doctors soon told me I had several fractures across the cuneiforms of both feet.
4) refuse to tell your close friends about your difficulties
Pretending that you can do everything, going clubbing every other night, spending the nights on friends floors, joining all the societies so that your weeks calendar is absolutely packed, is a sure fire way to get yourself burned out. They are all things that I did because I was embarrassed to say, “I can’t do that” or “I need to rest today”. I didn’t know what my condition was, I had never heard of it and learning about it was something I was not going to do because that would mean confronting the rest of my life. So how could I tell anyone else what I didn’t understand myself? I hadn’t learnt how to pace myself or how to manage my lifestyle effectively, and I didn’t want to be left out. As it turns out, my best friend from uni is still my best friend nearly ten years later – and telling him about my health was the best thing I ever did because his support has been instrumental in me feeling normal and living my life.

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So, yeah, my First Year experience wasn’t great and the following two years also had their challenges. Living further from campus and having to walk and ride buses made my attendance levels even worse. I lived with my partner instead of uni friends because I couldn’t let anyone else see me – or worse “care” for me for the rest of my degree. But I will tell you now that you will get precisely nowhere if you don’t disclose your disability to your university. There is so much support for you out there, and if they don’t do what you need complain about it until you are blue in the face. I’m doing my Doctorate at a different university now, and they tell me that they are required to go above and beyond in order to accommodate disabled students needs: if 1 disabled student out of a lecture group of 100 needs the room to change, then the room will be changed.

Making new friends is scary and daunting, especially if you aren’t as gregarious as I am, but when you do make them – talk to them. They’re scared and have their own problems too – so share! If you are new to your condition, I can’t tell you to get over your denial – it is a normal part of coming to terms with your health – but think about taking a gap year before uni to get to grips with yourself before you take up the challenge of living on your own. Remember: you might be living on your own, but you are never alone. Talk. To family, to friends, to pastoral staff, to a doctor, to Nightline, to anyone. And whatever you do DON’T do what I did – and struggle through a wasted opportunity because you are too proud.

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