29/09/2020

Why I Had To Drop Out Of School | A Disabled Student's Story

For the past almost 9 years I've not been shy about sharing my personal life online, especially when it comes to my disability, but there is one story that I've yet to tell in full. Now, if you've read my essay in Rife: Twenty-One Stories From Britain's Youth then you'll know a little about my experience at school, and in particular why I don't have A Levels, but I've always wanted to do a deep dive into it because it's a complex story and situation. It's the story of how I was let down by both healthcare and education, forcing me to walk away from school without getting my A Levels, and as a result giving up on my dream of going to university. All of that feels like it was such a long time ago now, 7 years has passed and I finally feel like I want to talk about it. Disabled people are let down by the education system everyday, for me it felt like my school only cared about me if I was regularly attending and getting good grades, and I know I'm not alone in this. For so long I thought of discrimination of only being things like physical access into buildings, but looking back on my school and healthcare experience it's clear to see that I was set up to fail from the very beginning. Grab yourself a drink and a snack because this is going to be a long post!


A bit of backstory, I have a genetic condition called Marfan Syndrome that only started seriously affecting me as a teenager. It was during Year 9 when I was 13 years old that things began to go downhill, I had to withdraw from all physical education classes and I started to have trouble climbing the stairs to the top of a 3 storey building for some of my lessons. This continued during Year 10 and then in Year 11 there were some classes that I simply just could not attend due to the stairs. I found myself sitting in the library at least once a day, filling out worksheets instead of receiving the teacher support all my peers were getting during our most important school year. Looking back the fact that no one offered or suggested moving my classes to the ground floor was a pretty big warning sign of the problems to come. 

My inability to climb multiple flights of stairs and take part in PE was mostly down to Scoliosis, the curvature of the spine. My curve worsened quickly during Year 11 and this brought with it a lot of chronic back pain. I was also struggling with writing though, Marfan Syndrome causes joint hypermobility and with this comes pain also. At this point I was already doing things like bringing a cushion into school and I'd managed to get my science teachers to allow me to use a stool with a back on it during lessons but it was clear that I'd need more support to succeed in my GCSE exams. We communicated this to my amazing form tutor, who I owe my success in my GCSEs to, and it was passed on to my Head of Year. Well, it all seemed pretty simple from there. We agreed I'd be best off using a computer for the longer written exams such as English and History and I'd need breaks to stretch my legs, it all seemed to be easy to sort. 

Being in the top sets for all my subjects meant that I took a lot of exams a little earlier, and one of the first ones was English Language. I remember arriving for my exam in the given area for students who had extra time or needs to find that I hadn't actually been given any of the support I needed. I burst into tears at this point at the prospect of having to handwrite a long exam. My English teacher was incredible and tried to calm me down whilst they looked into the issue and it was at this point that my Head of Year informed me I needed a doctor's letter to receive the support we'd requested. She informed me of this about 10 minutes before the exam was due to begin, not when we had any of our initial conversations. I was furious. They couldn't give me access to a computer but they somehow managed to get me a bit of extra time, but that really wasn't much help to me when I knew that after just 10 minutes of writing my hand pain would be unbearable. It's safe to say I failed that exam. Thankfully since I took it early I could retake it and I came out with an A in the end, but I felt so let down and abandoned. 


It was in Year 11 that it became apparent that my Scoliosis would need operating on, with the surgery involving using titanium rods and screws to straighten and fuse my spine. It's major spinal surgery and we purposefully scheduled the operation for after my exams so I'd have the Summer holidays to recover, ready to join my peers for the start of sixth form in September. Perhaps I should have named this post 'a series of unfortunate events' because when you write it all down, that really is how it reads. Surgery was scheduled for July and the day came around, with me staying in hospital the night before. Everything seemed okay on the morning of, but as time passed by we wondered whether I'd even be having my operation that day. We kept asking the nurses what was going on but no one seemed to know, I'd been nil by mouth for around 16 hours at this point. Finally, the messenger came; my operation had been cancelled. Suddenly everyone had concerns about putting me under general anaesthetic because of the heart condition side of Marfan Syndrome, a condition they had known about the whole time, throughout all my pre-op tests. I broke down in tears. I knew that I was waving goodbye to being able to have the surgery without interrupting school.

The surgery was rescheduled for December, after I'd been able to get reassurances from my cardiologist that it was safe. So, I started sixth form, taking one less A Level than my peers knowing that my education would be severely disrupted by the surgery. The day of surgery came round, again. Everything seemed to have gone really well, until I hit day 7 of my recovery. I woke up in the middle of the night with one of the worst pains I had ever experienced in my right knee/thigh. I begged the nurses for pain relief, it almost felt like I was being burned. No one seemed to take it seriously though and when I spoke to a doctor and physio later that morning, they put it down to a soft tissue problem caused by Marfan, despite the fact I was sure it was nerve pain. We put some ice on it and it calmed down enough for it to bearable, and for me to pass the post operate tests to leave the hospital the next day. Looking back now I wish I'd pushed harder for more investigation. 


2 months post op and I was still having problems with this pain, at this point I should have been starting to return to school but I could still only sit upright for around 15 minutes. I remember racing back to my bed after having a shower or going downstairs to eat, the longer I sat up the worse the pain got. Not only were my doctors not taking the pain seriously, but I was also receiving little to no work home from school. The more time that passed, the more behind I got. I tried to go back in for one lesson but I was in agony by the end, it was clear I wouldn't be returning anytime soon. So, you'd think we'd have more of solid plan in place for me to keep up from home? But no. Despite the school having a great SEN (special educational needs) team, not once did anyone think to gain advice and help from them. 3 months post op and my surgeon finally agreed to do an MRI scan, but I wouldn't receive the results from that until 6 months post up. During this time we had to make the difficult decision that I wouldn't be returning to Year 12 that year, I'd missed so much work from my school not sending work home that completing my exams would be impossible. The plan at that time would be that I'd essentially be held back a year and start all over again come September. But by that point, I'd truly lost all trust.

The MRI scan I had at 3 months post op threw up a new diagnosis for me, a Tarlov Cyst, but this was not a new condition, it was just the first time anyone had pointed it out so we went on to do a CT scan too. I think it was less than a week after that scan that I received a phone call to say that the cause of my pain had been found, a screw was sitting on a nerve. It was at 7 days post op that I suspected the issue was nerve related, but it took my surgeon 6 months to come to the same conclusion. If I'd had that CT scan during my original hospital stay we could have picked up the issue then, reoperated and had me back at school within 3 months. But instead here I was at 6 months post op, facing a second surgery and more time off school. They booked me in for surgery for September, 9 months after my original surgery and when the problems began. It was at this point that it became clear that even our plan of me being held back a year at school was not going to work. There was such little communication from my school that it felt like everyone had given up on me. And so, I had to walk away from my education. I'd been let down by my doctors and my school. I felt so alone. 

Rightly or wrongly I'd planned my whole life around the idea that I'd get my A Levels and then go off to university, something that really excited me, and having all of that pulled away from me was devastating. It's not until I first wrote about my experience that I realised just how much I was let down. For the sake of my own mental health I brushed it off as not a big deal and it being no one's fault that I was left without A Levels but looking back now I can see just how much I was failed. There was a huge knock on effect in my life due to it all, and whilst I'm happy with the path I'm on now there is no denying that career wise I'd be better off if I'd been able to complete my A Levels. I would have so many more options, potentially even the possibility of going to university now my health is more stable. It's really hard not to play the 'what if' game and I certainly haven't shared my experience to gain sympathy, but I do want to open people's eyes to how much we are failing disabled people in this country in every conceivable way. It's not just the benefit system, it's our education and healthcare too. As a disabled person in the UK it really feels like I've been set up to fail from day one. Disabled people are less likely to achieve GCSEs, A Levels and a degree based qualification, and it's about time we started exploring why and removing the barriers in our way. 

2 comments:

  1. I had issues doing my A-Levels as well. I actually started a BTEC at 16 but had to leave after a year for MH reasons, I then started A Levels at 18 and I couldn't get much support as my GP refused to write me a note!! I wasn't even allowed to use the lift! My college did allow me to have extra time but a laptop & the lift needed a doctors note, not sure why though, I think when they say this they're just being awkward as they use their own computers and lift. I actually left my first uni too as my GP refused to write a note and started my second uni with no support in place due to GP once again! I nearly got kicked out uni too due to struggling to attend lectures, but now during covid it impossible to study from home?? lol So unfair we have the right to the same opportunities as our peers!

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    Replies
    1. I'm so sorry you've experienced these issues too! People seem to just assume that we have equal access to all these things now but it's far from the truth!

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