Massive disclaimer: I’m probably going to cry in this video. One of the first videos that I made last year – it was a non-film review one (by the way – “review” – the sign for that is crazy) – was a video about what it’s like to be openly gay in school and I said at the time that I’d never been bullied about it, it wasn’t… it wasn’t really a very big deal to me but that is because I was dealing with a much larger problem in my life and that was making my life probably like five thousand times harder. I was always the kind who was either snivelling from some rotten cold or I’d injured myself really badly for no apparent reason. So, it reached the point where, “What’s wrong now?” was probably the thing that adults said to me the most. None of them hid the fact that they thought I was this massive hypochondriac and probably quite liked just sitting there being ill because no one listens to children. Their voices are minimized because it’s just assumed that they could not possibly know what they’re talking about even when it comes to their own bodies – the one thing that they most definitely have more experience of. I knew that my body wasn’t…right? (Sounds like an odd thing to say.) (“I knew it wasn’t right. I knew it was wrong.”) I knew that I injured too easily, and that things were just much, much harder for me to do than it seemed like other people. Of course, adults thought that I was just some lazy little weakling and they told me that. No one took my complaints seriously. They just assumed that this is what I wanted to be: ill, or just sitting down doing nothing useless. To the point where I fell over in school one day and I broke my collar bone, and gave myself major concussion and was left to sit in the corridor for quite a few hours, and then sent back to class And they all rolled their eyes and were like, “Oh, you’re fine.” “Jesus.” I can’t lie, I was pretty pleased when I returned a few weeks later with a MASSIVE sling and everyone had like a shamed face. Now, don’t worry too much. My childhood was not entirely doom and gloom. Then, much as now, I am very good at making myself incredibly happy I’m just really easily pleased. Life. I colour-coordinated my pens two days ago and I’m pretty sure the high is gonna last me the rest of the week Generally, though, it felt like I spent my life (pre-seventeen) being told that I was dreamy and useless and a weakling. “Dreamy” because I was going deaf which I had not realised. Although to be fair, on balance, I am a huge daydreamer, so I think we’ll let them have that one. “Useless,” however… that one cuts to the core. Don’t ever call me useless, God damn it. Doesn’t matter how rude you are to me – “useless” will always be the thing that hurts the most. Now I’ve told the internet my kryptonite. I spent the years before I was seventeen going kind of downhill as the pain got worse and worse. Claiming that I had “lost my bus money” so that my mother would have to come and pick me up and drive me home because I just couldn’t face the pain of walking down the hill carrying my bag with all my textbooks, and then sitting on a bus and not crying. I spent a lot of my time just trying not to cry as this immense pain – it felt like someone had an iron poker and they were just jamming it into my back and forcing my bones apart in like the most hideous way. I look back now and I have absolutely no idea how I managed to survive without painkillers, because that’s madness. If you have a scoliosis and a muscle disorder, and everything hurts for Christ’s sake, just go to the doctor and ask for some painkillers. There’s no point in being stupidly brave. So bits of me would just kind of stop and then start working and then dislocate and then cramp really painfully and then they would just hurt, so much that I wanted to chop them off. Did actually think once about chopping off my fingers because they hurt so much. The world was just getting quieter and quieter, and my energy was decreasing. It felt like I was being sucked back from the world, into this little isolated ball of pain. “You want me to take a test right now? Oh, and it’s one of the most important tests of my life?” “And it’s going to define my future and my choices, and everything I do for the next few years and maybe the entire rest of my life?” “And you want me to do it right now, when I’m–oh…OK!” So, I had to take the test being seventeen. I had to take my AS Levels. “And if you fail at those, you fail at life.” Actually said one teacher to me. So, I went into my AS Level Maths exam which was actually really difficult to study for because I couldn’t hold the book because my fingers are really weak, and I was like… So, I sat down, I picked up my pencil, started writing… but then, twenty minutes later, I couldn’t feel my arm and then an hour later, I couldn’t lift my arm and then twenty-four hours later, “I can’t move my fingers, or my arm, oh dear.” “It’s all floppy.” And then a week later I was rushed to hospital with my beautiful paralysed arm. Oh, and then the other one paralysed and then I had a lumbar punction that went wrong so I lost all my spinal fluid. And then I couldn’t sit up for a year and a half, and I had to lie in the dark, and I couldn’t have any sound, or light, or be touched because those things were all incredibly painful. Basically, everything hurt so they medicated me a lot. So it’s a good thing that I’m a daydreamer, huh? Yeah, it is. I spent a lot of that time creating some amazing visual worlds in my little mind and just living there. So, at seventeen, they finally diagnosed me and I was “officially” disabled and I really wasn’t going to get much better, apparently. Although, hey! Look at me now. Loot at me now So if I thought that I knew how hard it was to be physically challenged at school before… boy, was I wrong. So, there were two main problems. Number one: The physical practicalities of being in a wheelchair and unable to move your arms and number two, which is actually far more difficult: sort of the social problem. So, when I started at my sixth form, they were just building the sixth form school We were in portacabins a lot of our classes and that wasn’t great. The builders left everything in a mess, and we were constantly having to step over stuff – which, really, health and safety, guys! Why was it not happening? Many of our classes were in the main school building which we had to walk up a hill to get to. If you’ve ever tried to roll yourself up a hill – a super steep hill, like… It was Bristol. If you know Bristol, you know hills. I think there were actually only three classrooms on the ground floor. All of the other classrooms, there were lots of stairs. You had to either go up or you had to go down and there’s no lift – it’s a very old building. Oh, and the Art building – that was also impossible to get into it because there were steps up into that. That wasn’t the hardest part of attempting to finish my Art AS Level, though. The hardest part was clearly that I could not move my arms. And yet I know – I know that people do paint with a paintbrush in their mouth but I think that’s a skill you have to learn and you can’t do it whilst in hospital when you have two weeks left to go. Schools in Britain are legally required to provide access for their disabled students. So, the new building that was just completed as I was getting ill, had a lift. Schools are not legally required to turn on the lift …oh. I’m not even kidding. No one turned on the lift. Instead, for any class that couldn’t be re-arranged to be in one of those downstairs classrooms I had to be carried up the stairs and teachers aren’t allowed to touch you, or lift you, or do anything that could harm them and I completely understand that. Obviously, I don’t want someone to be hurting themselves. However! However, people in my class would have to volunteer to help lift me and if they weren’t strong enough, or there just weren’t enough people who wanted to volunteer, then I didn’t go to class. But I only had the energy really for one class a day, so I had to be driven in for that one class, and if I couldn’t get into the room…that was it. Just get driven home again. Oh, I also couldn’t go to the common room, because that was in a portacabin and I couldn’t get into a portacabin because the wheelchair didn’t fit through the doors. It really hurt my fingers, actually. Getting jammed in that door. Anyway. And then they moved the common room to the new building. It doesn’t really matter, the number of stairs, when you’re in a wheelchair – it’s just there are stairs. Actually it does… It was someone’s really bright idea to build on a hill. So I probably spent about 85% of my time unconscious 10% being taken into school by my mother, who then had to come and collect me twenty minutes later because I’d probably just passed out. I really wasn’t kidding about the inability to sit up thing. I could not sit up. And then the other 5% was probably daydreaming, or stuck in a toilet actually, because that happened a lot. So, a really valiant effort was made by everyone to continue my education except for the local school board who were massive pains in the arse; refused funding for months, and only gave me the equipment I needed mere weeks before I then had to graduate. (Thanks.) Name and shame, Bristol City Council. Name and shame. So that was the physical aspect of being disabled in secondary school but who genuinely aspects anything bureaucratic to be easy? It wasn’t. That would be ridiculous, so… Hey, this is England. Welcome to the land of red tape. It was frustrating, but it’s pretty much to be expected. Much worse was the social aspect. Now I’m probably going to cry. Probably the best way to describe it would be “three strikes and you’re out.” So, you turned down three invitations to social events and you were just like dropped basically, from the group. Even if your excuse was being in hospital, which is a really good excuse for missing someone’s birthday party. Actually, no. OK, no. I’m going to start with the really good stuff – with the amazing people who really helped me because that’s what they deserve. You know what? You know who you are. You were there for me. You came to visit me at home, or in hospital, or and you just hugged me, and I cried, and you let me and you let me know I wasn’t alone, and – aww, or you found me in the common room sitting in a corner, in my wheelchair, crying my eyes out because my old friends wouldn’t even acknowledge my presence and you very silently put your hand on my shoulder and just let me know that you were there. And that meant the world to me. So, to that little group of people – most of whom were actually just vague acquaintances before I became ill and were then amazing, and helped so much – you are wonderful, kind people and I thank you from the very bottom of my little heart. Especially Mary, smuggling custard tarts into hospital – that was awesome. And every other amazing thing that she did, actually. Oh dear. See? I’m at the good stuff and I’m already crying. It’s going well. It’s pretty common for disabled people – especially those who are kind of outwardly disabled in a very obvious way – to talk about being invisible to the wider world and…it’s really painfully true. It was as if I had suddenly been draped in this invisibility cloak I realise now that they were just awkward and didn’t know how to talk to me any more and how to handle the situation. And I was so distressed – so, that’s not much fun. You know, I needed my friends. And they just dropped me. Although, actually, that is too much–that’s too passive a term, really, isn’t it? One friend every time I got wheeled up next to him to a group that he was standing in, he would just walk away. Not say anything to those other people. He would just walk away. I would roll up to the same table in the library and he would just go. I think it was probably quite a sort of harsh atmosphere. You know, teenagers aren’t necessarily great at dealing with real drama and difficulties but, my God. That school was particularly bad. You know, if you are the odd one out, you are gonna get picked on. A girl in my year got glandular cancer. The running joke for weeks was how much she looked like a chipmunk. That’s–those were the–yeah. As I said: not the nicest school. So, I was sitting in class one day I’m sort of ignoring – totally ignoring – all of the sniggers happening around me and then ten minutes later, I turn around, and I realise that the backs of my paralysed arms are all blue and black and red and sore because the others had been pinching them to check whether or not I was lying about them being paralysed. And that was the standard : attempting to catch me out. Stabbing my thigh with a protractor to see if I jumped. Which I did, because my legs were not paralysed(!) as I had said. Not everyone in a wheelchair is paralysed. Don’t worry. Do not worry. There is a happy ending. It took me two years longer than everyone else but I finally finished my A-Levels and I had to take my exams lying down in the dark, with my eyes closed. Dictating to someone else who wrote everything down. The light was so painful; I could barely stay awake but I did it. I did it. And I finished with a good handful of A’s and B’s. And I went to university, which ended up taking five years, rather than the standard three. But you know what? I bloody did it! Bloody did it. What is the moral of this story? Number one: Listen to your children. If they are telling you that something is wrong with their body, they are probably right. Number two: Don’t ever call someone useless, because it will come back to bite you when they one day do something absolutely amazing. Fight forever. Fight for–fight for what you deserve. You are entitled to help, and you should take it and never, never feel ashamed or be ashamed–allow yourself to be shamed by the people around you. Whatever help you need to do whatever it is you want to do, take it. It doesn’t make you weak to need a little bit of extra help. And don’t worry about feeling like a burden, because you are bringing something to people; you just can’t tell. And most importantly… Most importantly: you are not alone. You are absolutely never alone because I’ve been through this and I’ve done it, and it sucked and it was really hard but you can do it. I did it. And even if life becomes suddenly something that’s very different to what you thought it would be it can still be amazing, I promise. Oh, OK. I should probably stop now, before I just turn into a panda. Where’s my dog? I need to cuddle a dog. Oh, there you are. Come here. Hello. See? Puppies exist so the world is a beautiful place. Aye-aye-aye.