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‘You Look Well For Someone with Three Disabilities’: The Trails and Tribulations of Being an Invisible-Disabled PhD Student

By Kate Haddow

Yes, you read that correctly: three, not one, not two, but three. As if being a PhD student was not hard enough, my genetic lineage has decided to test me to the limits too. I have Dyslexia and Dyspraxia which are specific learning disabilities and I also have Epilepsy which is a neurological disorder.   I have these conditions for the rest of my life, they all effect my day to day existence and more importantly they also affect me as a PhD student.  All of these conditions aren’t necessarily visible to the naked eye, and they are also very misunderstood, which makes my life a sheer delight. I hate having to fill in forms that ask about disabilities because usually they assume you only have one, but I have three and when I hand the form back they look and make ‘hilarious’ remarks like ‘oh aren’t you greedy’ or ‘I’ll just put you down as having multiple disabilities’ shall I’.

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I only have epileptic fits in my sleep and my epilepsy is not triggered by flashing lights (this is where everyone gasps, yes you can be epileptic and go raving in a nightclub), making many people doubt my claims around my epilepsy, as many people remark, “well I have never seen you take a fit”. Just because you can’t see it doesn’t mean it isn’t there. Then many people say “oh that’s good if you have them in your sleep”.   Taking fits in my sleep can be very dangerous for a number of reasons such as, suffocation from the bed clothes, falling out of the bed, I am at a higher risk of SDEP (Sudden Death in Epilepsy) and if I am sleeping alone no one is there to assist me. There are also the side effects that come with epilepsy, it isn’t just the fit itself. There’s the exhaustion, the weird feelings of just not being you, the outer body experiences, the need for a nap after a long day just to make you feel slightly more human.  Epilepsy brings with it odd feelings, sensations and experiences that are very difficult to describe. If I was to sum up having epilepsy it would be me lying on my sofa covered in my blanket taking a nap, because I am permanently exhausted.

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The effects of a fit are the worst and that’s what people don’t understand, many think I have the fit and then when I come round I am as fresh as a daisy and I just leap out of my bed and head to work – Wrong! The fit is only the start of it, recovering from a fit is the real pain. When you come round from a fit you generally have someone sitting over you looking into your eyes to make sure you’re OK, your mind has just had an electrical storm and no matter how close I am to the person sitting over me, I don’t know who they are and I don’t know who I am, I don’t know what time it is, or even the year? This initial awakening is petrifying because you don’t know anything, you have to gradually piece together information like who am I? Where are we? It can take a few minutes, it’s like your brain has just been replaced with scrambled eggs.

Then physically you feel like you have just had a fight with Rocky Balboa, you ache from head to toe as during a fit your limbs are stiff and your muscles lock and tense up. Then there is the feeling like your head if full of rocks that no amount of paracetamol, ibuprofen or aspirin will get rid of. Then there are all the bruises, scratches and carpet burns all over you, which you have to then explain to everyone, that no you have not been fighting with anyone. Then the worst part for me personally is my tongue, I always bite my tongue and it’s bloody painful, making eating and drinking unbearable. I love food and my body does this to me, it’s cruel. The only way I recover is sleep and lots of it. So if we make plans and I have a fit, yeah you can just cancel those plans, because I have a date with my bed and pillows and I don’t care how important it is, I seriously need sleep.

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Many people might think well your epilepsy shouldn’t affect your PhD, but it does in many ways you would never think of. My main worry has always been conferences, a colleague once laughed that I always take my partner with me to conferences and thought it was sweet, as if we could never bear to be away from each other. I reminded them there is a very good reason I take him with me. He is my version of a guide dog, if I take a fit alone in a hotel miles away from home; who is there to clear my airways, who is there to calm me down once I regain consciousness, who will contact people on my behalf to tell them I am too ill to attend a conference while I am lying in bed unable to do anything?

This means conferences cost me and him a fortune because he has to pay for his travel. Then when I am busy in the conference itself he finds himself wandering around towns of the UK twiddling his thumbs. It puts me and him in the awkward position of being my partner and carer at the same time. Luckily my partner is very supportive and enjoys coming to conferences with me, but what if he didn’t? What happens one day if he can’t? When I put this to my disability advisor, they laughed.

Conferences also tend to be very long days. They often involve me standing at a freezing cold empty railway station at 5am, so I get there on time and within my small budget. It also means I have cut down on my sleep leaving me tired, which is dangerous for the type of epilepsy I have. By the end of the day my eyes tend to be bright red and burning and I get the worst headaches and I feel like I am out of my own body. People say well you should have had a nap on the train, but then I am scared of having a fit. I really can’t win.

Then there is my dyslexia and dyspraxia, this is the bit I have been really looking forward to writing! You get a mixture of responses when people find out you’re dyslexic. Some people are genuinely shocked that a dyslexic has been allowed to do a PhD, because most people assume that if you have dyslexia you must struggle to tie your own shoelaces. Some people have even implied that I have had lot and lots of help and that lecturers must be generous when marking my papers. Yes these are all real things people have said to me. Some people wonder how I got to do a PhD, am I just at the university to boost the disabled students numbers and to make it look like universities don’t discriminate. The idea that I worked hard always seems like an aberration and is the last thought on people’s minds.

The most common remark I get when I tell people I have dyslexia is “really but you’re so clever!” So, just to put it out there, dyslexia does not affect your intelligence at all. If we want to get really philosophical, what is intelligence anyway? Reciting all the numbers in Pi, being able to make something with your bare hands, critical thinking, or coming first in the pub quiz? Who knows? A lecturer during my undergraduate studies told me something that I will never forget: if we tested a Roman solider today using the IQ test, they would appear to have a very low IQ and classed as having severe learning difficulties. It’s clear to me that intelligence is a fluid concept that we have constructed ourselves in order to help classify people.

Being a PhD student, I have realised how much academics love ripping each other to shreds over grammar, spelling, syntax or even semantics. Many people may think well, what’s the big deal? So you should be able to spell and have an excellent grasp of grammar if you’re working in academia. However, what happens if you can’t because of how your brain is wired up, but you still have ideas and opinions on a subject?

I have witnessed and been victim to people publically humiliating me for my substandard spelling and grammar. Why do people take so much pleasure in making people feel so small? Why can’t we offer a more supportive environment for those who struggle with spelling and grammar? I already feel at a huge disadvantage being dyslexic and writing a PhD; I really don’t need anyone to make me feel even worse. Someone once said to me ‘your e-mails are appalling in terms of grammar, why don’t you get someone to help you’? Perhaps because I am not a small child that needs watching over, also who the hell is available to check my emails at 11.59pm before a 12 am deadline? Seriously, if I had to get someone to check every e-mail I ever sent, nothing would get done.

Dyspraxia is a condition that affects your coordination, so basically I am very clumsy – and yes, it is possible to trip over your own feet and fall over something that isn’t there. I am well known for falling over, and dropping and breaking things. I get more frustrated than anything with this disability. There have been days where I have just cried my eyes out because it’s been one of ‘those days’ where I have dropped my phone nine million times and dropped my lever arch file into a nice muddy puddle.

Many people ask what kind of support do disabled students actually get at university? My answer depends mostly on the government, because it all boils down to money. That’s right – being disabled is bloody expensive. Every year I have to beg student finance for money to give to my university to support me, and it is not an easy process. To me it never makes sense giving a dyslexic student thirty pages of paperwork to fill in. They are very intrusive and the forms are long and you need to provide a lot of evidence. It works on the basis that you need to demonstrate why you’re entitled to help. Some years you get more help than others, and in recent years it is slowly draining off, thanks to government cuts.

Personally I find support from both universities and funding bodies inadequate for PhD students. There are a few reasons for this, mainly because I don’t feel some disability advisors understand what a PhD requires, and funding bodies don’t understand a PhD isn’t just confined to books and a laptop. The support you get is a blanket approach, so the same kind of support you got as undergraduate is the same as you get as a PhD student. They say it isn’t but trust me it is, which boggles the mind. I also find I get spoken over or ignored when it comes to my support: no one asks me what I want, what I would like or what I really need that will actually make a positive difference to me and my disabilities. I find they talk to me as if I don’t know what I am doing. I have two degrees and I’m now onto my third and you’re taking to me like that, I wonder if Stephen Hawking has to put up with this crap too? It’s very much this is what we offer, so take it or leave it, you can’t negotiate. They tell you about your disability, even though you have already been scrutinised and professionally assessed. You’re the expert on yourself at the end of the day: you know your own problems and limitations far more intimately than they can ever grasp.

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I wrote this as an outlet for my frustrations with my disabilities, people in academia, and at how little we understand disabilities in society as a whole. I don’t claim to speak for every disabled student, I imagine we all have very different experiences of studying with disabilities. I just wish people would realise we aren’t all the same and we are all different. I wish people were more open-minded about hidden disabilities. I also wish universities and funders would allow me to go conferences and events feeling safe and well, and I wish they would give me some say about my disabilities. I don’t mind answering questions about my disabilities if it helps people to learn more about them. I hope someone, somewhere finds this identifiable and funny.

Shout out to my partner, Pete, who is an excellent conference carer. It’s not ideal using your own work holiday up to chaperone me to conferences, I know you must get bored wandering places on your own and visiting the many museums and galleries across the UK, whilst I am away. He is also an unpaid proof reader, who has the hard job of decoding what I am actually trying to convey in words. I don’t say it often enough – but I do appreciate how supportive you are.

 

Kate Haddow is a PhD student at Teeside University. She is one of the BSA Postgraduate Forum Co-convenors.

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