"Don't Tell Me What I Can't Do!"

 When I was a teenager, I spent a lot of time watching LOST (like most other TV fanatics my age). One of the scenes that always stuck with me was introduced quite early on in the show’s six-season run.

    John Locke is shown in a flashback, having flown to Australia to participate in a walkabout (think Bear Grylls without the staging). If you’ve never watched the show, Locke was paralysed from the waist down before he crash-landed on the island – thus, he’s in a wheelchair in this scene. Throughout the few episodes building up to it, we’re given a glimpse of how passionate Locke is about attending this walkabout. From what we know of him, he’s a badass, and he would thrive in this environment. 

 

    So, the big bad guy in charge takes one look at him, and he tells him he can’t go, that he “misrepresented” himself. And Locke pleads with him, but this guy’s having none of it. Then Locke starts repeating this phrase, over and over, until he’s screaming it at the bus as it drives away:

 

    “DON’T TELL ME WHAT I CAN’T DO!” – his voice audibly cracking, even through the volume of his cries. 

("DON'T TELL ME WHAT I CAN'T DO!" screen-cap from LOST)

    It’s a phrase that comes up with Locke a few times throughout the series, and each time it feels like a punch in the gut. The pain that he feels is something that many of us with disabilities and other chronic health conditions have experienced before, and it sucks. It really, really sucks. People don’t always believe in us the way we wish they would... It can feel like our disabilities stop people from truly seeing us.

 

    As someone with both epilepsy and mobility problems, there’ve been so many times when I’ve been jolted back to the image of John Locke screaming at that bus. 

 

    It all came out of nowhere. I was at my very first Leeds Pride back in 2015. One minute we were dancing...then I was down. Everything was black. I woke up in hospital with my homophobic mother arguing with my then-girlfriend about who got to sit in the chair next to me. I was unfortunate enough to make the mistake of telling her that, actually, I wanted my girlfriend with me. That wasn’t a good conversation. I had an MRI, along with some other poking and prodding, and that was that. I just thought I’d been spiked.

 

    A few weeks later, it happened again. And again. And again. Each time the seizures got closer together and lasted for longer, and each time I got whisked off to hospital. Along with each visit, I was lucky enough to receive the gift of my mother complaining that she had to pick me up. Meanwhile, I was supposed to be doing my A-Levels, but I was spending most of my time recovering from seizures. 

(Me in an ambulance, on one of my many trips to hospital).

    Now, I am someone who always dreamt of going to university. I’d worked really hard the whole way through school, and I’d got good GCSE results despite some very poor circumstances at home. I wasn’t about to let some seizures stop me.

 

    Every time I managed to go into college, I was ostracised by the staff, who decided it was appropriate to write my name exclusively in red marker (rather than the standard black) on the whiteboard outside the staff room. The board was a way to indicate that a student had done something wrong and needed to speak to the head of sixth form. But what had I done wrong? I had a disability, which they knew about. They had personally witnessed me having seizures during classes and in the hallway. The impact of it was clear. It was much easier for me to do the work at home than it was to be constantly pulled out of classes to explain to staff why my attendance was so low (13%). If what happened to me happened to my future children, there is absolutely no chance that that would stand. It was discrimination against people with invisible disabilities, and it is illegal. 

 

    I explained my situation to staff over and over again, but the head of year would repeatedly claim that I didn’t inform him that I had epilepsy, which was a complete lie. The tiny size of the college would mean that it was impossible to forget things like that – there were so few pupils. Eventually, the head of sixth form sat me down and told me that he thought I should leave, encouraging me to apply for an exam-less course at an alternative college. He didn’t think that I could pass my A-Levels with 13% attendance. 

 

I had the last laugh when the first lot of results came in: I’d gotten straight As. My results in first year were one of the best in the college, and that man wanted to boot me out because I was an inconvenience to them...because they couldn’t be bothered to look past someone’s disabilities and see what they can really do. And the college’s offences against disabled people didn’t end with me. 

 

There were a handful of students with visible, physical disabilities who were segregated together into a group and made to eat on their own at lunch. One of the girls was in my form, and when I went over to try sit with her during lunch I was shooed away by the staff, which was just so weird and unfair on her. It was all these little things that added up, which I didn’t really think much about at the time, because everyone was acting as if this mistreatment of us was the norm.

 

Fast forward to September 2016, and I was starting a Fine Art degree at a university in Leeds (that will go unnamed for legal reasons). They knew from my interview that I was disabled, but then as soon as it was discussed with my personal tutor (a mentor you’re supposed to meet with weekly), she started treating me differently. She ignored all of my emails, she refused to make appointments with me, and she once looked at my work and straight up said it was “terrible” and walked away. There was no critique, no advice...just “terrible”. 

 

I wondered if there was someone I could go to about this, but the university’s disability department was essentially non-existent and uninformed. So, I sent an email to the head of my course explaining that I felt as if I’d been forgotten as a student, which was never replied to. I then considered that it was just a personal vendetta or ableism in the staff of the Fine Art course, so I applied to change to Graphic Design. However, all of my enquiries went unanswered, despite someone else from my course successfully transferring to Graphic Design a few weeks before I applied... 

 

Finally, I sent an email to the HE admin staff explaining what had happened. I expressed that I wanted to either transfer to Graphic Design or leave the university. This was replied to with instructions on how to drop out, so that made up my mind. They didn’t care about the disabled students at all.

 

Around this time, I started to get a bit down about life... This was something that I had always imagined being the best part of my life, and it was nothing like I imagined it. Meanwhile, I was getting horrendous double vision and nausea from gradually increasing my dose of Carbamazepine, and eventually trying to add in a secondary medication (Gabapentin). The secondary meds made me too sick, so I was forced to stop taking them. That was the point that I knew I would never be legally allowed to drive in the U.K. I would never be seizure free.

 

In a desperate attempt to concoct an answer to my situation, I was put through what seemed like endless MRIs (not the best when you’re claustrophobic) and EEGs. The worst one was the 48-hour EEG, where the equipment is worn on a belt, the wires threaded up to your neck, and a load of electrodes are GLUED to your scalp for 48 hours. Then, every time you have a seizure, you (or someone nearby) presses a button on the belt thing at the beginning and end of the episode, to mark it for analysis when your brain activity is analysed. There were two reasons why this sucked:

 

1. It looks like a budget Doctor Who costume gone wrong. And very unfortunately for me, it was Halloween during my 48-hour EEG, so I’m pretty sure some people thought it was a costume. And I was subject to a whole bunch of being laughed at, pointed at, asked questions, etc. It was humiliating.

 

2. The glue sticks to your skin like cement and causes a number of problems. Firstly, the technician that applied the glue seemed to just smear it all over with no regard for the difficulty it would cause me. He got glue all over my hair, in places it really didn’t need to be. You also get two on your forehead, which end up being the worst two... To remove it, they scrub your scalp with acetone over and over until they detach the electrodes. This gave me acid burns on my scalp and forehead. I looked like I was about to grow horns. Once those electrodes are out, they don’t care AT ALL about getting it off your hair. So then you end up pulling loads out trying to get it off, burning yourself with acetone, and it literally doesn’t wash out. I washed my hair seven times and it did nothing. The only reason I could get it out at all was because my partner saved me ­­– she sat for hours combing and picking it out. If you don’t have someone to do that, it’d be even more of a nightmare.

 

(During the 48-hour EEG)

    So I’d had half a year off after dropping out, and my whole life had just been revolving around medical treatments. It was a conversation with my mother-in-law that got me feeling excited about art again. She encouraged me to apply to the university I wanted to go to when I was younger (Leeds Arts University). I wanted to go there back in 2016, but I'd accepted an unconditional offer from the other university out of fear of not getting the grades I needed to be accepted (but annoyingly I could have gone there all along). 

 

    “I think it’d be just what you need,” she said. 

 

    I rushed back to my laptop and headed straight over to UCAS. I was doing it. All the teachers, tutors, and the head of year that didn’t believe in me were going to be proven wrong. There was a brief awkward conversation where I had to ask my old head of sixth form for a reference, despite what had happened, because UCAS is stupid about who is allowed to give you a reference. But he did it – probably out of guilt.

 

    And there it was: Congratulations! We would like to offer you an Unconditional place to study Visual Communication at Leeds Arts University.

 

    There was a certain anxiety ­– would I be treated as badly as I had in the past? Or would this be the time where people could see the potential behind my epilepsy?

 

    It’s always anxiety-provoking to put yourself in a situation where people can see your vulnerabilities. I know for a fact that at least 50% of the people from my course would think of me as “the epileptic one”, because it took over a lot of my life, and unfortunately that means it comes up in conversation a lot. But that’s not what I wanted people to see.

 

    In first year, I was still having A LOT of seizures. But this time, I felt supported. LAU has a fantastic disability support department. It was run by the lovely Shelly at the time, who always went above and beyond to put disability-specific plans in place for each person. She’d always help arrange reasonable adjustments for students – she’d even contact members of staff for you if you didn’t feel comfortable doing it yourself. Shelly really helped me, more than she probably knows. I was so over-joyed, after all the negative, discriminatory experiences that I’d had in education, to finally feel supported. It was refreshing. 

 

    On the one occasion where someone was rude to me about my attendance (they were in charge of student attendance), Shelly and my lovely tutor/mentor David were straight there to support me. 

 

    The Attendance Officer suggested that I take the year off/defer my education for a lifetime-condition that will always affect me. Taking the year off would have been pointless. And David sat there, singing my praises, telling her about my work and my results...and it made me a bit teary-eyed. Finally, someone was seeing what I was capable of.

 

    When you work in digital illustration, the screen time can be quite triggering for seizures. But, I loved the medium, and I was determined to stick with it. Most days I was drawing for as long as I could until the first seizure came. After that, it would be a battle to get stuff finished in between the endless wave of convulsions. My tutor also came up with the idea to do my tutorials via video chat, so that I was able to receive critiques from home. He also had a fold out mattress for me to use, so that I didn’t have to have seizures on the dirty floor anymore. Another tutor on my course once stood behind me and literally held onto me to stop me falling off a high stool during a fit (thank you, Richard!). 

 

    The whole BA (Hons) Visual Communication and Disability Support teams went above and beyond to help me, and I will always appreciate them seeing me for me. Thank you all.

 

    Fast forward to the end of third year. My seizures had calmed down a lot, and I was finally having some days with none at all. I got all my work handed in on time – I felt so proud of myself. Unfortunately, it was the beginning of the COVID-19 pandemic, so I never got the graduation picture I’d been dreaming of. But, I got something much better than that: a 2:1. For anyone not familiar with university grading, that’s the second-best grade. 

 

    I did it. I proved that I could tackle any problem caused by my disabilities; I proved that I could achieve my dreams. 

 

    It’s been over a year since I graduated, and now I’m working on my biggest dream of all: starting a publishing company that’s diversity-focused. I can’t lie, it’s hard work, but it’s also exciting. After six years on Carbamazepine, I’m finally down to 2 – 4 short, focal seizures a month. I’m actually conscious during them now, and they usually last around 30 seconds, so it’s a massive, life-changing improvement. 

 

    We spend our entire existence being told that our disabilities stop us from living our everyday lives. People think that we can't have lasting relationships, and that we can't be high achievers in our careers, or even that we can't have a family of our own. That's just not true. Going through university – and life in general – with such severe epilepsy was challenging, but not impossible. I got my degree, I got married, I own my first house, and I started Clay House Press. If I can do it, so can you. 

    To all the people who tell us to give up: you are wrong.

    So, “DON’T TELL ME WHAT I CAN’T DO!”, because I can do anything you can. Well, unless there’s strobe lighting, but other than that...anything. 

 

    If you’re a disabled person reading this article, and you’ve ever been made to feel like you couldn’t do something...please know that you are capable of anything! I believe in you.