by Lewis Hine
Part of the problem that year was that I’d missed even more school than usual. My shunt blocked twice, landing me in the operating theatre both times, and I also spent four or five weeks in Great Ormond Street Hospital having epilepsy investigations because my seizures had got really bad. (The investigations are horrible because, as I said earlier, the doctors have to take me off my medication. It’s like going cold turkey; I have no control over my body at all and I shake so badly I can’t even hold a cup of water.) I was away so long that my classmates assumed I’d moved to a new school and had forgotten all about me.
Secondary school was hell from the start. We were told that the local school, the one Chloe went to and where all my old primary-school classmates were going, wasn’t the best option for someone with my disabilities, and that the best solution was for me to go to a comprehensive with a dedicated special needs unit. We knew that this school was at the bottom of the league tables, but they had a lift for my wheelchair, a physiotherapy room, a sleep room and lots of specialist staff who were used to dealing with kids with complex needs. Mum and I knew academia was never going to be my thing and, even though I wasn’t in a wheelchair every day, this seemed like the safest choice. So we bought the uniform and off I went.
It was 45 minutes away by bus and I didn’t know anyone.
If you’re disabled, you don’t catch the ordinary school bus. You get a special disabled one with an escort. My nan was the escort on my bus. Mum had arranged it – Nan was looking after kids on a different bus at the time, but Mum was so worried about how I would cope all by myself that she called the school transport department and asked if they could transfer Nan to my new school. It’s not very cool, is it, having your nan on the bus, but to be honest, I was relieved. Stress tends to bring on my seizures and I don’t think I would have made it to school at all that first day if she hadn’t been there.
I knew I was in trouble as soon as I arrived. The special needs kids were totally integrated into the main school and from what I could tell, I was the only one in my form. And everyone seemed to know each other already. I wasn’t in my wheelchair – I’d been determined not to use it on my first day – but when I walked in, everyone turned to look at me. I just stood there wondering how on earth I was supposed to talk to these kids, let alone make friends with them. I knew they were looking at the scar on my head. I’d had my hair cut really short so that it wasn’t as obvious, but there’s no hiding it. I always tell people the truth when they ask what’s wrong, and I was asked a lot of times that first day. Some of the kids were just curious. One, Charlie, came up to me and said, ‘That’s a really bad haircut, mate. I hope you got your money back,’ which made me laugh. Charlie was OK. We did maths and English classes together and neither of us had much interest in the lessons, so we just messed about, chucking pencils at each other at the back of the class. He was my only friend in Year 7.
But some of the others used my scar as fuel to hurt me. ‘You brain-damaged then?’ was a question I heard a lot. There was no hiding the fact that I couldn’t go anywhere without an LSA following me about, or that I had to eat my lunch in a special corner of the canteen, or that I’d come to school on a disabled bus. And by the end of the first week they also knew I used a wheelchair quite a lot of the time and that the escort on the bus was my nan. If anyone was looking for a reason to pick on me, they had plenty to choose from.
It was a rough school – I nicknamed it ‘Fight Club’ because pretty much every day somebody hit somebody else, and even the teachers were attacked sometimes. One had a mug of hot water thrown over her. It wasn’t long before I got hurt. I was in a tech lesson and this boy, let’s call him Elliot, glued my hands together.
‘Come here, Lewis,’ he said, grabbing me by the wrists.
I didn’t see what he was holding and the next thing I knew, he was pushing my palms together. I could feel something hot and sticky. It was hot glue and it was burning my skin.
‘How’s that feel?’ he laughed, pushing me towards his friend.
‘What you need is a wash,’ said the friend. We’ll call him Kyle. He picked up a tub of paint and threw it at me, right in my face.
‘Why the hell did you do that?’ I shouted. I had paint in my eyes, my ears and up my nose and I couldn’t separate my hands.
That got everyone’s attention. The room went quiet – even Elliot and Kyle stopped laughing – and then my LSA rushed over and took me out of the class to get me cleaned up. The paint wiped off OK, but getting my hands apart? My God, I’ve never experienced pain worse than that. I’m surprised it didn’t rip my skin to pieces.
Elliot was sent to the headmaster after that, because everyone in the class saw it happen and it’s difficult to miss a multi-coloured boy who can’t move his hands, but a lot of the things he and his friends did went unnoticed. I had an LSA with me all the time so they’d wait until she was distracted or helping someone else. Like the time I was punched in the face in a food tech lesson. This boy and I were at the back of the classroom clearing up, my LSA was sitting talking to the teacher – and the boy just went for me. I’d say it was totally random, but he’d disliked me from day one and had always used my disability as a reason to bully me. Some people seem to get a kick out of having a go at other people; I’ve no idea why. I can’t remember if he said anything to me at the time, and I think I was probably too shocked to retaliate. I sometimes shouted at these kids but I never fought back – what would be the point? Fighting’s never a good option for me; I’m not a ninja and I haven’t got any reflexes. One punch and I’d get one straight back, twice as hard.
Mum told the head of year that I’d been hit, but nothing was done. None of the other 12 children in the room saw anything, and nor had the teacher or my LSA apparently. I suppose it could be true that they were all too busy washing up and chatting to notice a fight at the back of the room.
Soon after that, the same boy and one of his friends got hold of me. We were in class but the teacher was busy with another group. He pinned my arm to the table so I couldn’t move while the other boy started cutting along the inside of my arm with a compass. He pushed so hard he drew blood. Mum found the marks when I got home and phoned the school immediately. They said they would ask around but when they called back, they said no one had seen anything – perhaps I’d got confused. Or I’d misremembered. It’s true that my memory is unreliable, but I definitely had cuts on my arms and I know I didn’t cut myself with a compass.
It happened time and time again. I’d come home with marks or bruises, Mum would call the school, they would promise to check and then we’d be told that no one else could verify my story. I began to wonder if I really was crazy. By the time I was in Year 8, a ‘super-head’ had been brought in – to turn the place around, we guessed. He was very focused on improving the school’s reputation and we all know that reports of bullying are damaging.
Things came to a head for me in Year 10 when the boy who hit me in food tech started a Facebook group. He added a load of people from school and took a photograph from my sister Jessica’s Facebook page (without her permission) to use as the group’s cover photo. It was of me and her when we were really young on a Barney the Dinosaur ride.
It took me a day to realise what was going on. I’d been added to the group from the start, so I knew the picture was there. I wasn’t all that bothered; the photo was a bit embarrassing – who wants to be reminded that they were once into purple dinosaurs? – but I was well used to people making fun of me. Then I started to scroll through the posts. One said that I should have been sent to Auschwitz, another that I should kill myself and save the NHS some money. I was so shocked that I just sat there looking at the screen in a daze. I knew they were saying it because I was disabled, but how did that mean I should die? I didn’t get it. I just didn’t get it.
Mum came in to my room and found me sitting staring at these messages on my TV. When she saw what I was reading she went crazy.
‘This is disgusting,
Lew,’ she said finally, when she’d calmed down. ‘We need to report it. Don’t you delete it, we need to screenshot it as evidence.’
So we let it play out for a few more hours. That was tough; the messages were really horrible. When we took the screenshots into school the next day, though, we were pretty sure that we’d be taken very seriously.
We weren’t.
The school’s response was that the messages had been sent outside school time and off the premises, so they couldn’t do anything. So Mum went to the police. A couple of officers came round to interview me and the ringleader was charged with malicious communications. We agreed on something called ‘community resolution’, which meant the case didn’t go to court and the boy wasn’t given a criminal record. The police asked me if I wanted to choose what he did, but I said I didn’t care. All I wanted was a letter of apology. When it came, it was obvious that his parents had written it. That really upset me, to be honest.
Charlie, my first friend at that school, stuck up for me. He refused to join the group, which was brave, considering he was one of the cool kids. Eden and Alfie were really supportive too. I’d met them in learning support in Year 8 and the three of us had clicked straightaway. We always made sure we had lunch together. Alfie was in a wheelchair, but he’s done so much physiotherapy since then that he doesn’t need it now. That’s pretty inspiring.
But even with Charlie and Eden and Alfie around to talk to at school, I was finding it more and more painful to be there. I went because that’s what normal kids do and I wanted to be a normal kid more than anything else, even if it was only for a few hours a day. But the bullying drummed it into me on a daily basis that I wasn’t like everyone else. Every punch, every snide remark, reinforced the fact that I was different. They made me believe I was useless.
I began to withdraw, spending more and more time shut away in my bedroom, refusing to get dressed and inventing reasons not to go to school. At that point I believed that nothing would ever change for me.
My Top Tips for Life
Never try and guess what people think of you – it just makes you paranoid and will drive you insane. Do what you want to do in life and don’t worry about what people think. Remember, you are amazing!
FRIEND FINDER IS BORN
THE FIRST HALF of 2015 was rough. I felt really isolated; I had no one my own age to talk to and share my experiences with because I had so few friends. My older sister Chloe was bullied at school, too. That’s her story to tell if she chooses, but one of the things she did to help her deal with it was to start campaigning. She’d applied for funding from GoThinkBig.co.uk, a youth development programme supported by O2. GoThinkBig provides training and support for young people who want to lead social action projects in communities across the UK; they offer work experience and other opportunities as well. I’d been impressed by what Chloe had done, so at the start of that year I’d decided to apply, too. I went up to London and filled in the form telling them that I wanted to put on a party for children and teenagers who’d missed a lot of school and needed a way to make friends. I called the idea ‘Friend Finder’. The grant was approved by O2 in April 2015, a month after my fourteenth birthday, and I was sent a pre-payment debit card with £300 on it. Fantastic, right? You’d think so. But then the depression kicked in. Six months went by and the card just sat in my bedroom, doing nothing. Like me.
In June I had an operation on my feet – the most painful operation I’ve ever had.
I’ve had overlapping toes ever since I was a toddler – yet another side-effect of my neurological condition. I wore these big Forrest Gump boots at infant school, and then, luckily, when I went to junior school, the hospital gave me insoles to slot into my normal shoes. One was red and one was blue so I didn’t get them muddled. They worked fine, but the condition got worse as I grew up. Before long I was treading on my toes as I walked, so it was decided that I should have an operation to straighten them.
Who knew that straightening your toes meant removing the knuckles and inserting metal poles instead? Certainly not me. You could actually see them – the metal poles, I mean. They stuck out of the ends of my toes and made me too scared to go anywhere in case they got knocked. They were like that for six weeks. The whole thing was horrific. Mum, Jess and Chloe called them my ‘Wolverine feet’, which looking back is quite funny, but I don’t think I laughed a lot at the time.
The only thing I was really looking forward to was going to see Kid Ink. We’d got tickets to see him at the O2 Guildhall in Southampton on 16th October. I am a massive Kid Ink fan and I’d saved up all my Christmas and birthday money that year so that I could buy some stuff from his Alumni Clothing line when we got there. I wanted a baseball cap (I collect baseball caps) and a chain with an A on it. As soon as I’d put them on, Mum took a photo and tweeted it. It said something like, ‘12 brain surgeries, a lot of pain. What makes Lewis happy? Kid Ink.’
Kid Ink saw it and retweeted it and the next thing I knew, there was a security guard standing next to me with his phone. We were sitting in the disabled area so we were pretty easy to find. We thought he was going to ask us to move, but then he showed me the tweet and said, ‘Is this you? If so, Kid Ink wants to meet you after the show.’ I couldn’t believe it. We didn’t expect him to even see the tweet, let alone do anything about it.
I was so excited that the gig passed in a blur. When it was finally over, we were taken to a bar backstage. All the support rappers were there and Kid Ink himself was standing in front of this huge backdrop having his photo taken with people who’d probably paid a fortune to have a meet and greet.
‘Wait here,’ someone said. So we did.
One of the rappers was chatting Mum up.
‘Damn, Mum, you’re hot,’ he said.
I mean, embarrassing or what? But Mum thought it was great, of course.
Then Kid Ink waved me over.
‘Hey, Lewis,’ he said. ‘Take your hat off and I’ll sign it for you.’
Then he put his arm around me like we were mates. I remember we were exactly the same height. He let us take loads of pictures – me with him, Mum with him; even Chloe and Jess had a turn.
Then his manager asked if we wanted any clothes.
‘Wow, yes please!’ I said.
The manager went away and came back with a pile of T-shirts.
‘Here you go,’ he said. ‘On the house.’
Jess, Chloe and I were so shocked we just burst out laughing.
We were in there for ages – 20 minutes at least. What’s that saying? ‘Never meet your heroes’? Well, I disagree; Kid Ink was my hero and meeting him was one of the best things that’s ever happened to me. The free T-shirts and photos were really cool of course but, more importantly, he went out of his way to talk to me and make me feel welcome. I was majorly depressed at that point, but the fact was, Kid Ink, a super-famous person, wanted to talk to me, Lewis Hine. He thought I was worth it, and that blew me away. As I left he said, ‘You’ve got to keep fighting, Lewis.’ I forget everything, as you know – and I’ve forgotten most of what he said that night – but those words really stuck in my head. By the time we got home, I’d decided that I’d take my consultant’s advice and let them replace the programmable shunt with a fixed-pressure one, after all.
The problem with the programmable shunt was that because it was magnetic, it played havoc with the MRI scans. This meant I had to have X-rays before and after every scan to check the pressure levels hadn’t been reset in the scanner. It caused a fair amount of chaos at school, too; I was in a science lesson once and we were doing an experiment with magnets, when I suddenly remembered that I wasn’t supposed to be around magnets.
I put my hand up. ‘I don’t think I should be in this lesson,’ I said. ‘Magnets can interfere with my shunt.’
The poor teacher went as white as a sheet.
‘You need to get out, Lewis, straightaway,’ he said.
Then he ran over to where I was sitting, picked me up and lit
erally carried me out of the classroom before I even had a chance to move. Everyone except him thought it was hilarious.
Meeting Kid Ink gave me the push I needed to put my Friend Finder plan into action, as well. I decided to use the O2 money to pay for a Halloween party for kids in my area whose illnesses made it hard for them to make friends. Kids who looked different, behaved differently, or who had just spent so long in hospital or at home in bed that their classmates had forgotten all about them. Kids like me, in other words.
I put posters in schools and community centres, hired out the local leisure centre, bought a load of Halloween decorations and ordered a huge stack of takeaway pizzas, garlic bread and potato wedges. I had no idea how many people were going to come because the adverts and Facebook posts said to just turn up, but I didn’t want anyone going hungry. (If you’re wondering how a 14 year old with no memory and writing like a four year old did all that, then the answer is, of course, with help. I had the ideas and dictated the emails. Mum, my sisters and their friends did the organising. They were like an army of personal assistants.)
There’s always a horrible moment just before a party when you worry that no one will come. I remember standing in the Havant Leisure Centre sports hall with this huge fake scar across my forehead, next to Mum in her devil horns and Jessica, Chloe and a bunch of Chloe’s friends all dressed up as ghosts. The place looked pretty good – there were inflatable ghouls, paper pumpkins and a ton of food, but I was sure I’d made a mistake. Perhaps there weren’t any other kids like me.
But there were. One by one, 20 kids, ranging in age from four to 16, arrived in fancy dress. They bobbed for apples, bounced the inflatable ghouls around the hall and ate every potato wedge on the table. It was fun. But the weird thing was, they didn’t talk to each other. The younger ones just stayed with their parents or carers and the older ones hung around with the people they already knew.