Russell had never been good at sleeping away from home. He spent the night tossing and turning despite the comfortable hotel bed. His insomnia was due partly to sleeping in a different environment and partly because of the anticipation. He’d been looking forward to this day more than anything for months and now that it was just a few hours away he felt too hyped up to get any rest. Eventually he managed to doze for a few hours and woke early to find the morning sun streaming between a gap in the blinds. He yawned and stretched, craning his neck back until it cracked. He smiled. His mum hated it when he did that. She kept telling him that one day he would crack his neck so hard his back would break. Russell had never told her that he would be completely fine with that.
He heard movement from the other room and a moment later Ellie came into the room holding two cups of tea and with a present tucked under her arm.
'Happy thirteenth birthday Rus!' she said, flumping down on the bed next to him and handing him a cup. 'Sleep well?'
'What do you think?' he said, taking a sip of the scalding liquid.
'Well I slept like a log. I’m not looking forward to going back to my lumpy mattress at home after sleeping here. Anyway, happy birthday.’ She passed him the present which was wrapped in the brightest paper Russell had ever seen. Inside was a brand new varsity style jacket. He held it up with a big grin on his face.
'You want to look good today,' she said, getting to her feet and lifting the blinds. Russell winced as sunlight blasted his face. Through bleary eyes he looked out at the open plaza in front of the hotel. Even though it was early it was already milling with people. It had rained during the night but was showing signs of brightening up already. In the distance, beyond a line of trees he could just see the topmost tower of a castle. Not just any castle. Russell had been wanting to visit Disneyland ever since he could remember but his parents had always stubbornly refused to go, citing the expense and commercialisation of such a holiday despite his constant nagging. When Ellie had announced she would take him to Disneyland Paris for his birthday he had been over the moon.
'Come and get changed, I’ve got a big surprise for you!'
Russell eyed her warily. ‘You’re not cooking breakfast are you?'
'Just get a move on,' said Ellie, sticking her tongue out at him.
Once she was gone, Russell drained the rest of his tea and threw back the duvet. He tugged his pyjama bottoms down to reveal a bulging diaper underneath. He’d started wearing them in bed a couple of years ago, buying them with funds purloined from the housekeeping money. When his parents found out they’d done their best to be understanding and allowed him to continue wearing them on the condition he didn’t wear them during the daytime. Part of the thrill of being on holiday with Ellie was that he would get to wear them the whole time. His big sister had always been the one he could confide in when he realised he was a little different from other kids his age. She understood him in a way nobody else did.
Ripping the sticky tabs on either side of his diaper he sat on the bed and lifted the front away. The inside was damp and stained with urine. Digging into his bag he took out a packet of baby wipes and cleaned himself before slipping into a fresh diaper. The sensation of wearing the crinkling material underneath his everyday clothes was amazing. He had specifically chosen trousers that were fairly snug to show off the bulge in the seat and crotch. Slipping on his trainers he wandered out to find Ellie, enjoying having the bulk of the diaper between his legs as he walked.
His sister was waiting for him, wearing a light summer dress and studying a map of the amusement park. He glanced around. 'So, what’s the big surprise?'
‘It’s in my room, but you have to close your eyes first,' she teased.
Reluctantly Russell complied. ‘It’s not a Mickey Mouse costume is it?' he asked, keeping his eyes tight shut but listening as she opened and closed her bedroom door.
'You can open them now!'
Russell opened his eyes and looked at the object that Ellie had brought in. His eyes bulged. 'Seriously?' he gasped.
'Happy birthday,' she said, unable to contain the smile which broke across her cheeks.
Russell gazed at the wheelchair in awed speechlessness. Slowly he walked around it, studying the frame from every angle. It wasn’t like the boxy wheelchair he had used when he broke his leg three years ago. This was sleek, a lightweight RGK Maxlite day chair, the kind you only saw paraplegics using. It had orange quick release Spinergy wheels which were every so slightly cambered to make pushing as easy as possible.
‘Try it out,' said Ellie. Russell glanced at her and realised she was filming his reaction. His face flushed with embarrassed glee as he turned and plopped himself down into the seat. As soon as he sat down and bucked up the waist strap he felt at home. He gave the wheels an experimental turn from one side to the other. The chair was incredibly light, weighing only a few kilos, and responded to his movements as though it was a part of him. The thick memory foam cushion was only made more comfortable by the addition of his thick diaper.
'This is... I mean...' words failed him for a few moments. 'Thanks Ellie.’
'I knew you’d like it,' she said, ruffling his dark hair. Russell was too pleased to kick up a fuss at his hair being mussed up. He wheeled around the coffee table in the lounge area of the room.
Ellie grinned. Ever since he had broken his leg her brother had been obsessed with being in a wheelchair again. It had freaked her out a little at first, especially when he started wearing diapers and shuffling around the house on a skateboard like he was paralysed but she had gradually come to accept that this was simply the way Russell saw himself, and after that it was an easy decision to support him any way she could.
He looked up at her, a quizzical expression on his face. 'Just for today?'
Ellie laughed, knowing this was her brother’s polite way of asking “for keeps?”
'I talked it over with Mum and Dad. They’re happy for you to use a wheelchair around the house. Same rules as your pads just now, so no using it outside.’
‘That’s okay, that’s flipping amazing,' he beamed, smoothing the creases across his knees. 'So what now?'
'Breakfast first and then I believe we’ve got a Disneyland to see,' said Ellie. 'But first I’ve got a couple of accessories for you.’
‘There’s more?' panted Russell.
Reaching into her bag, Ellie dug around and came up holding a pair of afo braces. 'You'll need these to keep those feet straight.’
Russell was about to lift his leg so his sister could strap the first brace but Ellie bent down and picked up his leg instead. Following her lead, Russell allowed his lower body to go limp. It was a bit of a struggle for Ellie to wrestle the braces on. She had a pair of knee length socks which she pulled on and stretched over the top of the braces so they wouldn’t rub against his skin too much. His trainers had to be loosened but with a bit of effort Ellie managed to slip them on over the plastic orthoses. She then placed Russell’s feet back on the footrest and stood back as if to appraise her work.
‘Try letting your legs flop a bit more to the side,' she suggested. Russell followed her advice. His legs rested against one another and a slightly unnatural angle, looking pretty lifeless. 'Great. You look really authentic now. Try not to let your legs move too much but if they do we can just say you get spasms or that you have an incomplete injury.’
'Okay,' said Russell, nodding. Now he just wanted to get going!
They made their way out of the room and headed down to breakfast in the lift. Russell felt amazing pushing himself along with just a few smooth movements. The RGK responded beautifully to his guidance. As soon as they hit the lobby downstairs he could feel people watching him as he made his way into the restaurant where Ellie carried his tray to a table and he took a moment to remove the chair so that he could remain sitting in his wheelchair to eat.
After breakfast they headed out and took a shuttle bus from the hotel to the main park. The excitement of having his own wheelchair had almost eclipsed Disneyland for him but as they drew closer and he saw the spires of the impressive castle coming closer he felt his anticipation building. The ground was still damp when they disembarked from the bus (Russell allowing his sister to wheel him down an extendable ramp) but the sun was definitely trying to peek out from behind the banks of grey cloud hanging over the park and there was no shortage of people milling around. Through the crowd Russell spotted a couple of figures in costumes inviting people into the park and posing for photos. Not for the first time Russell realised he was far more excited than the average thirteen year old should have been to be visiting Disneyland but he reasoned he’d been looking forward to this for a long time, not to mention he was a massive Disney fan.
They passed a life-sized figure of Buzz-Lightyear. The gigantic figure waved at Russell as they passed and he stopped to grab a quick photo, a stupid grin plastered on his face. As they moved down the main pavilion towards the towering Sleeping Beauty Castle, Russell could see plenty of little kids (and some grown ups too) gawking at him as he pushed himself along. Fortunately he had a pair of sunglasses so he was able to catch quite a few of their inquisitive expressions. Ellie strode alongside, enjoying the attention just as much as her brother.
Just being in a wheelchair didn’t allow them to jump to the front of the queues for rides but they did have a disabled pass which allowed them to book times on the rides they wanted. Russell had a long list of attractions he wanted to visit and he was glad that most of them were wheelchair accessible, provided the visitor was able to transfer themselves without too much difficulty. Russell had spent plenty of time watching YouTube videos of paraplegics moving themselves around and had even practiced himself so he could do it pretty convincingly. He shuffled himself to the edge of his seat and then hoisted his backside across, allowing his feet to trail lifelessly behind. A few times Ellie helped him, holding his flaccid legs, letting his braces clack together as his feet swung. By the time they had visited half a dozen rides it was time for lunch, and Ellie guided them to one of the many restaurants in the park.
Russell was feeling tired; he wasn’t used to pushing a wheelchair around and his shoulders were tight. Ellie pushed him for a while, giving him the chance to people watch. He gathered his hands on his lap and curled his fingers as if he was a quadriplegic. Paralysis appealed to Russell, although he couldn’t say why. The idea of part of his body being motionless thrilled him. He wondered if maybe one day his sister would take him out as a full quadriplegic one day, with headrest and chest straps and all the other accessories. It was a nice idea, but for now he was perfectly content being a paraplegic.
Maybe it was all the excitement or the gallons of coke he’d drunk, but when they got to the restaurant Russell realised his diaper was soaked. It was a nice realisation because he hadn’t even noticed himself going to the toilet.
'Uh, I think I need a change before we get something to eat,' he said. Ellie nodded and asked a waiter the way to the disabled bathroom. The changing facilities weren’t great. A narrow fold down shelf was the only place to get changed. Anyone bigger than Russell would have had to get changed on the floor but fortunately he was small for his age and it was easy enough to haul himself out of his wheelchair and onto the shelf.
‘Don’t forget you’re meant to be paralysed,' said Ellie as he reached down to unbutton his trousers. ‘Your better let me sort you out.’
Russell lay back, curling his hands again as though he didn’t have much fine motor control and allowed his sister to deal with his diaper. She had changed him loads of times before, but this was the first time that he had experienced a diaper change while pretending to be paralysed. It was lovely watching her lift his limp leg under one knee so that she could roll him slightly onto his side. His diaper was indeed soaked, in fact it had leaked and there was a large damp patch around his groin. Ellie looked at him crossly.
'You should have let me know it was this full.’
'I didn’t know,' he said.
'We'll have to head back to the hotel and find you something clean to wear. We can’t have you wheeling around the park with pee-stains on your trousers.’
'Do we have to?' Russell didn’t want to head back any more than his sister did. ‘What don’t out just buy me a pair of shorts at one of the shops?'
Ellie looked thoughtful for a moment. 'Alright. But I think we’d better have an extra toilet break this afternoon just in case we have a repeat incident.’
Russell agreed. They stayed in the restaurant for lunch and headed into one of the many shops in the park to look for some clean clothes. They ended up buying a whole new outfit for him and, since the sun was out, he decided to wear shorts to show off his ankle braces. The remainder of the afternoon followed the same pattern as the morning (minus the diaper leakage) with them visiting various rides and booking times to come back later so they didn’t have to hang around waiting in queues with his wheelchair.
Being just as nuts about Disney as her brother, Ellie insisted on going through some of the attractions twice. She was super keen to do Sleeping Beauties Castle again but Russell, not feeling that fussed about it, said he wanted to stay outside. Ellie bought him some candyfloss at a nearby vendor and promised to be back soon. He was nearly finished with his candyfloss when he caught sight of a boy around his age being pushed along in a wheelchair. The woman pushing him was also holding the hand of a small girl, who in turn was holding the hand of an even smaller boy. Russell had spotted the boy earlier. We was pretty attuned to picking out people with disabilities and was always on the lookout for them. Mostly when he caught sight of what he thought was a wheelchair it just turned out to be a bicycle but not this time. The boy might have been a year or two younger than himself, and from the way he sat with his arms folded he wasn’t enjoying himself very much. The woman said something in French to the two younger children and they started leaping up and down and squealing with delight. The boy shrunk down even further in his chair. The woman, Russell guessed she was his mum, shot a question at her son and received a glare and shake of the head in response. She wheeled him over to a bench and locked on his brakes before taking the two younger children by the hands and heading off in the same direction as Ellie, towards Sleeping Beauty Castle. Russell watched the boy. He seemed to be trying to make himself as inconspicuous as possible, staring intently at his phone as if ignoring the world around him would make the world ignore him back.
Russell had seen other kids with disabilities in the past and had always wanted to go up and talk to them, but had been too shy. But now that he was in a wheelchair himself he decided that he was okay. Chucking his candyfloss stick into a nearby bin he wheeled himself over to where the boy was sitting. The boy looked up, his eyes glaring out from beneath a tangle of dark hair which came down past his eyebrows. It was only then that Russell considered that he could barely speak French. It was by far his worst subject at school. He froze for a moment, fully aware of the boy's eyes drilling into him.
‘Uh... Bonjour,' he said at last. 'Comment ça va?'
The boy’s eyes narrowed. 'English?' he said.
'Your French sucks.’
'Yeah, sorry about that. It’s my worst subject.’
'I can tell,' said the boy, but despite his glower he didn’t seem unfriendly. 'I'm Marc.’
'Russell...' said Marc, slowly rolling the name around his mouth like a gobstopper. His English was heavily accented but pretty clear. ‘Have you been abandoned too?'
‘My big sister wanted to go around the castle again,' said Russell, jerking a thumb at the hulking structure nearby.
‘My little brother and sister have been hyperactive all day. I do think they will ever sleep again.’
Russell laughed. 'You don’t seem that happy to be here.’
‘What is there to be happy about? I am here with my screaming brother and sister. People stare at me because I am in a wheelchair,' said Marc with a shrug.
'Have you been in a wheelchair long?'
'About, ah... Two years I think,' said Marc. 'I am on holiday with my family in the nature and I have a crash off my bike.’ He looked expectantly at Russell.
'I... um...' said Russell, feeling his cheeks flush. He had spent literally hours reading about spinal cord injuries but all of a sudden he couldn’t think what to say. 'Transverse myelitis.’
Marc arched an eyebrow. 'I do not know this word.’
‘It’s a disease in the spine. I just woke up one day and I was paralysed.’
'Oh,' Marc seemed to digest this. 'I thought you could only get paralysis by having an injury.’
'I think they suck no matter how you get paralysed,' said Russell, trying to think what he would say if he really was paralysed.
Marc nodded in agreement and stared around at the crowds of people. 'I hate it when they stare.’
'I don’t mind so much,' said Russell. ‘We’re just different and that makes them curious.’
'I do not want to be different,' said Marc icily.
Russell glanced down at the other boys legs. He was wearing loose fitting tracksuit bottoms but he could clearly see the outline of his legs jutting through the material, as well as a slightly thicker area where he must be wearing a diaper. His wheelchair was much more basic than Russell’s RGK, and he was clearly interested in the better chair.
'I am still waiting to get a better wheelchair,' he said. 'This is the same one I have when I am sent home from the hospital.’
'Want to give mine a go?'
Marc shook his head. 'I do not like to move myself in public.’
'You'll like it.’
A handful of emotions played across Marc’s face; embarrassment, desire and curiosity amongst them. Desire and curiosity won.
When Ellie returned twenty minutes later she found her brother sitting in a strange wheelchair licking an ice cream and watching a dark haired boy doing wheelies and stunts in his wheelchair. She paused for a moment, watching the two boys laughing and talking, before he came closer. Russell’s eyes lit up when he saw her.
'Hey Ellie. This is Marc. I’m letting him try out my RGK. I think he wants one too!'
Marc bashfully approached Ellie, smiling his shy smile. Ellie grinned back. 'Those are some pretty good moves.’
'It is easier in a better wheelchair,' said Marc.
'Marc says he knows which places are the best to eat,' said Russell as they transferred back into their own chairs. ‘Can we have tea with him?'
‘Tea?' asked Marc.
‘He means dinner,' said Ellie. ‘We call it teatime in the UK. I don’t mind, so long as it’s okay with Marc's family.’
'It will be okay. My mother is always telling me I need to meet other young people with disabilities.’
When Marc's mum returned she was pleasantly surprised to find that he had made a friend. She didn’t speak much English but fortunately Ellie was much more proficient at French than her little brother and she was able to chat away to her while the two boys rolled along side by side ahead. Marc’s siblings, Zoe and Jean-Luc, were amazed by Russell’s wheelchair and ran along beside him or helped push him along. Apparently Marc spent as little time as possible in his wheelchair at home, preferring to lie in bed watching TV most of the time, so it was still a bit of a novelty to them. They had dinner together in one of the nicer places to eat and chattered away while the sun dipped towards the horizon. Finally Marc’s mum said they had to go and take Zoe and Jean-Luc to bed because they were practically asleep at the table and they had a long drive home tomorrow morning. Russell was sad to see them go. He really liked Marc and it had been cool spending the evening with another kid in a wheelchair.
'You will have to come and visit us soon,' said Marc. 'It is very boring where I live but it would be nice to have another person in a wheelchair to talk to.’
'And if you come over to England we should meet up,' said Russell. He already had Marc’s email, phone number, Facebook and Snapchat, so keeping in touch wouldn’t be a problem.
'You must work on your French for next time,' said Marc.
‘Au revoir,' said Russell in an exaggerated French accent. He waved goodbye to Marc and his family as they headed off back to their car. By now the sun was half-hidden behind the horizon and the park was starting to empty. Russell slurped up the last of his chocolate milkshake. They had booked tickets for the evening shows but first of all he needed another diaper change.
'You okay?' asked Ellie as she taped a fresh diaper into place.
Russell shrugged. 'Just tired I guess.’
'Nah, I know what you’re like when you’re tired. What’s up?'
'Do you mind that I want to be in a wheelchair?'
Ellie tugged his shorts up over the bulk of his diaper. 'I want you to be happy and I know that being in a wheelchair makes you happy.’
'Yeah but Marc didn’t ask to be paralysed. He didn’t want to be in a wheelchair.’
'And does that make you feel a bit guilty?'
'I don’t know.’ Russell hooked an arm under his knees and scooped up his legs so he could transfer back into his wheelchair. 'I just worry sometimes that I’m weird.’
Ellie bent down so that she was on the same eye level as her little brother. 'You are weird Russell. Wonderfully weird. I love that you’re weird. So what if you’d prefer to be in a wheelchair than walk. I’ll look out for you either way. You know what?'
‘It’s okay to be weird.’
Russell thought about his sister’s words as she pushed him through the milling groups of tourists towards the pavilion were there was to be a light show and costume parade. He did feel guilty about hankering after something which had turned Marc’s life upside down, but at the same time he couldn’t help himself. Maybe Ellie was right. Maybe it was okay to be weird.
‘Aren’t you going to do any pushing?' said Ellie over his shoulder.
Russell laughed and started to push himself along. His legs wobbled slightly as his front castors bumped over a crack in the flagstones. He was going to have to get used to pushing himself from now on. It would be so amazing using the wheelchair at home and perhaps once his parents got used to it he could even go on a few trips outside with it. He chuckled to himself. Maybe he was weird but that didn’t change the fact that this had been the best birthday ever.