‘Hanging out’ is slightly different for a disabled teenager. Whether it’s going out to places, sleeping over, or simply chilling in a park – I know that my experience will always be somewhat different from that of my friends. Today, I mostly wanted to focus on the experience of visiting other people’s houses to hang out or sleepover. I love visiting my friend’s houses to spend time with them, and we always have fun while we mess around with each other – But when you’re disabled, it can sometimes be a nerve-wracking experience:
One of the main reasons that I wouldn’t get invited to sleepovers or hang-outs when I was younger is because people would assume that I wouldn’t be able to move around in their house, that I wouldn’t be able to go upstairs, or that it would be too difficult for me to take care of myself (hopefully this was the reason, otherwise they just weren’t inviting me because they didn’t like me XD). I one hundred percent understood why people were hesitant to invite me because of this – it can’t be easy as a thirteen-year-old to ask your friend whether they can dress themselves or go toilet without aid.
However, this meant that when I occasionally did get invited to sleepovers, they were sort of like a test: A test where I had to prove how independent I could be. I needed to take those rare opportunities to shine as much as possible by doing everything that I possibly could by myself, and showing them that inviting me over didn’t mean dealing with the extra burden of caring for me. If, during a sleepover, I wasn’t able to go up the staircase by myself or I needed help to put my socks on – it felt like I had failed at something. And then when I didn’t get invited to the next sleepover, I would blame myself.
So, I love sleeping over and hanging out with my friends, but in the back of my mind, I’m secretly eyeing the staircase – dreading the moment I will have to attempt the ‘mountain of doom’ to get to the top floor. Or I’m secretly preparing to wield a knife and fork to do battle with the difficult-to-handle dinner meal. They’re sort of like trials that I have to pass – And if I fail to be able to do them by myself, I may become a burden to the host and no one would want me at the next hang-out. I’m a stubborn girl, so I can sometimes spend ages locked away in the bedroom while I wrestle with my clothes – determined not to ask for help and fail the test.
Therefore, my goal was always to be as easy as possible, to not ask for help too much, and to do everything that my friends were doing by myself. I just wanted people to know that they could invite me over without worrying about how much help I would need.
Generally, the ‘test to impress’ consists of five main trials:
The moment that I first enter a house is a little like a movie reveal moment – I roll inside and do a long, thorough scan of the terrain, praying in my mind that it will be an easy one to navigate. Some houses are difficult for my wheelchair to enter: they may have steps leading up to the entrance or the doorway may be too thin. Of course, not being able to enter a house would mean an immediate failure of the test (luckily, this has only ever happened once).
Some houses are big enough for my wheelchair to move around in and some require a little floor shuffling for transportation – but either of those is fine. Due to furniture density, there may be fewer places in the house that I can go to – but that’s fine too. Obviously, houses with lots of passageways and small steps are less than ideal. I’d never let it show if I struggled with a house though, my goal was to be as easy and agreeable as possible.
Generally, the first thing that I secretly search for in a house is the staircase. I can go up wooden or smooth stairs if they are straight, but I struggle more with carpeted staircases. Sometimes it’s the opposite though – it can be hard to know exactly what I can do until I at least try. Which means that we’ve made our way to the dreaded stair trial: Will I have to start going up them, only to have to sheepishly admit that I can’t do it on my own? Or will I be able to conquer the wooden mountain?
It’s also hard to know what bathrooms and toilets I’ll be able to use by myself. I’ll definitely be able to use them myself if my wheelchair can fit into them. If not, then there has to be some sort of stool or low-down surface on either side of the toilet that I can use to lift myself onto it. Nowadays, I simply ask my friends to take a picture of their bathrooms for me to see before I visit them, or I ask them to describe what it looks like.
After I posted the ‘Why I Don’t Eat In Public’ post on my blog, eating in front of others has actually become a little easier. It was extremely helpful for me to open up and talk about the issue, and all of the comments that I received genuinely helped me to feel more comfortable with myself. Writing posts (like this one) lets me take a proper look at some of my actions and makes me question why I do certain things and how I should think differently to change them. Before, I used to battle with a knife and fork, making sure to keep a huge grin on my face while I silently struggled my way through a meal. Now, I don’t mind simply asking if I can eat with my mouth and diving into my food (as long as there’s a napkin nearby). Because honestly – who cares?
When we’re all sharing from a packet of crisps (‘bag of chips’ for the Americans), I tend to find myself a partner who’ll remember to offer me a handful of crisps every now and then. I have quite a large appetite, and my friends know that I’m too shy to constantly ask for food, so it’s handy to sit next to someone who remembers to ask in case I want some.
5. Playing Games
Playing games can be hard. I can still use some Wii or video game consoles, and I can probably struggle my way through some of the seated Just Dance levels, but I’d honestly prefer to watch. The main reason that this one is hard is because people see me watching and start to feel guilty since they think that I’m not being included. But, actually, I’m just naturally more of an observer and I truly enjoy watching others play games. After sleepovers, people sometimes approach me to apologise for the ‘horrible time that I had’ because I wasn’t able to join in with much, but if I was given the choice – I’d still probably choose to watch physical games (like Frisbee) and video games instead of joining in.
Now you have an idea of how hang-outs used to feel for me. When I was a pre-teen/early teen, I also used to occasionally have accidents which, obviously, were also causes for shame during hang-outs. Things are different now, but ‘being a burden’ is still a fear that I have when I visit others, and I’m still slightly scared that people may not want me around as much as their able-bodied friends.
I primarily wrote this post in the past tense because this was mainly an issue that I faced when I was younger. Now that I’m slightly older, my friends know for certain what I can and can’t do, so I mostly just stay within the safety of my supportive friend group. Sometimes, it does feel like I’m still completing the ‘test to impress’ though. I think it’s because my condition has worsened over time, so friend’s houses which I used to be able to navigate without issue are becoming more and more struggling. I’m still fine there though, and I know that I can handle it, but I can see in my friend’s eyes that they’re not sure whether inviting me over is such a good idea anymore.
While I was writing this post, I realised that I’ve never spoken about this with my friends before and should probably just open up to them about this. It’s funny how often ‘saying how I feel’ is the answer to my problems, but it can sometimes take me years to figure it out. I’m curious to know: Do you ever worry that you’re a burden to those around you? Don’t worry, I understand how it feels. But when you find true friends who love you for who you are – they’ll just see you as you, and not as a mess of all the things that come along with you like untidy eating or needing help to go upstairs sometimes. 😊