‘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:
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1. Terrain/Layout
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.
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2. Stairs
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?
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3. Facilities
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.
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4. Meals
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.
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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.
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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. 😊
The Wheelchair Teen 
Thank you for sharing. I’m glad you have found the courage to share your feelings. As you keep reminding us they are valid and sharing them can help.
When I am struggling with my depression I start to wonder why people would want to spend time with me. This spirals into feeling that time spent with me would sap their energy by worrying about me as well as doing whatever we’re doing. One thing I’ve learned is that I’m responsible for what I say and do, not for how others respond to what I say or do. So, I try my best to act with kindness in all I do. I don’t succeed all the time, but I pray God continues to help me work at it.
Keep in keeping in being awesome. 😊
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I love your way of looking at the world – I don’t think that I would have ever considered looking at things this way! In the modern society that we live in, it can be so easy to focus on what other people think about us rather than focusing on ourselves. ‘I’m responsible for what I say and do, not for how others respond to what I say or do’ is another one of your sayings that I’m going to have to write down so that I can remember it for later. I think that it’s a really healthy and self-accepting way of looking at life, and I’d like to have the courage to try living by it too. Truly – Thank you Hamish. 🙂
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Please do use these phrases – in sure I’ve picked them up from somewhere along the way too!
I am not perfect, but I try to choose kindness whenever I can. I feel drawn to helping others, and this blog seems to be providing me a way to do that, and learn from others in the process too. 😊
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Just thought I’d say again that you’ve been a great source of inspiration. 😊 As such I have shared a link to your blog on my “Ideal Inspiration Blogging Award” post! I don’t think people must accept a nomination, but If you feel up to making a similar post you’ll find my questions on my post here:
https://hardlinesheavytimes.wordpress.com/2020/09/04/ideal-inspiration-blogger-award/
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Thank you! I’ll definitley get around to accepting it 🙂
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I’m so glad I heard from you again! ☺️ (Or I think it was me who haven’t been on WordPress for quite a few weeks now) haha internet sucks!
I really love reading your posts, and I’m glad you’re looking at things more positively now. 💕 Your friends are the best. And I thought the “taking pictures of their bathrooms” part was brilliant! It just shows that we can always adapt to our circumstances in life and things can get better. Thanks for sharing this! 💕☺️
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Don’t worry, it wasn’t just you. I took a break from my blog for a few months while I was dealing with some difficult mental struggles – but I’m feeling much better now. Thank you so much for the encouragements ❤ It is funky some of the stuff that we can get used to sometimes, and I love my friends so much for just being able to roll with it and still caring for me and all my groovy mess. 🙂 It's nice to see you back too! I don't know if it was intentional, but when I tried going onto your blog, WordPress said that you made it private.
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Glad you’re feeling much better! 💕 Yes, I did some changes in my blog but u can reach me here: https://ellesunpopularopinions.com
I hope u stop by my blog! 🥰
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Thanks for sharing the new link, I’ve just subscribed! Don’t worry, I’ll get to answering your blogger award soon – I’ve already written the post, I just had to delay it for a little bit during the break that I took from my blog.
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Don’t worry about it ☺️💕
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“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.”
This is so sad! I’m glad you managed to get past this stage and started worrying less. Then again, I understand yours IS an ongoing battle – with pretty much everything we able-bodied people take for granted. The key is, indeed, to find friends who accept you for what you are, but also – as you said – not to be afraid to open up about your difficulties. Great post as usual!
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Thank you ❤ You're right, mine is an ongoing battle – but I'm also starting to figure out that most of the battle is with myself. I set myself unrealistic standards (like being able to perfectly eat a meal like everyone else) and care too much about what other people think. If I could give one piece of advice to little me, it would be: 'Do you, and the friends that will still invite you and hang out with you even when you're being yourself, are the ones worth having.' My perspective may be slightly different, but I'm sure that everyone can relate to pretending really hard to be something that they're not so that they can fit in.
Thank you so much for always reading and supporting my writing, Roberta. You've been here since pretty much my first post and I sincerely appreciate all of your feedback and encouragements – Every. Single. One of them. They all mean so much ❤ ❤ ❤
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I only went back and read this now (I’m going through the old posts I commented on to check on the answers), and…aww, thank you! 🤗
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I definitely struggle with cutlery, and I can remember the day I sat down to dinner at a friend’s house and the cutlery had a really narrow, almost rolled handle. Because of my RSD and ulnar nerve damage, I find holding a knife SUPER painful, particularly as it always seems to press right where the worst pain area is (on the wrist joint on the inside of the wrist). Anyway, I tried to slice a sausage and my hand spasmed.and sent tomato sauce flying all over the table. My friend and her mum were super cool about it but like you, i was too embarrassed to stay for dinner again. I used to lie and say that Mum was cooking for me. I never once got invited to a sleepover either. Had plenty, never got invited though!
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I’m sorry that you had that experience, it sounds as if you can relate to my specific situation more than most. I’ve done everything from pouring sauce down my front to accidentally biting into and therefore breaking a glass cup. Still, I love the fact that you had plenty despite not getting invited – that must have taken a ferocious and defiant spirit. That’s one of the things that I love about you and your blog – how you throw caution and frivolous things like ‘taboo’ to the wind. I’ve thoroughly enjoyed the posts that I’ve read, but unfortunatley, my stubborn laptop can’t figure out how to comment on your site. Either way, know that, as a disabled girl, your posts mean a lot to me. Especially as someone who didn’t even think that it would be possible for them to date or have a romantic partner because people with disabilities are hardly ever portrayed that way.
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Oh yes, I threw an ice cream in my Dad’s lap once because of my damn hand spasms. It was hilarious now I think back to it, but it was mortifying at the time, and sauce down the front, you mean to tell me that’s not normal? I do that so often, I lose count! Honestly I’m just used to changing my t-shirt now, that I refuse to let it bother me. Aww thankyou, I just think that in today’s society we should stop pretending to be anything other than who we are, but I’m really glad that my personality has inspired you because really, that’s what I set out to do. Your comment also made me think about the old social club I used to attend for disabled people and how damaging that was. It was well intended, but it was another classic example of defining what disabled people can and can’t do, or are and aren’t into. It’s on my whiteboard now so it will get done soon!
As for comments, comments sections are usually right at the bottom of the page, under the social media buttons 🙂
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I look forward to it. XD Your comment made me laugh out loud – I loved your food stories. I can see your comment section box, but for some reason it says that I need to log in to comment even though I’m already subscribed. I’ll try and figure it out, but for the mean time, just now that I’m reading 🙂
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WordPress can be weird sometimes. I had some issues about three days ago, it wouldn’t let me add the Facebook page or Twitter widgets via the menu, but if I added them on the widgets admin page, it’d do it just fine? Go figure 😀
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Also meant to ask you because my overenthusiastic thumb tapped ‘send’, which food stories do you mean? If you’re on Instagram, I post 4 times a week (@bigboldandbright) with the meals I make, plus other random stuff I have going on, mostly the dog, because he is cute. I shared a photo of our Sunday dinner that my husband cooked and it’s been my most popular post to date. It’s war 😀
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Oh, I just meant the story of you tossing ice cream onto your father’s lap, but I’m subscribed to you on Instagram now too 🙂
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Ooh! Haha I’m easily confused, sorry. I noticed, thankyou! I followed you too 🙂
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Great post!! I love that you have friends now that are accepting and send you pictures of their bathrooms. You deserve all the love and friendship. I’m sorry it was hard for you in the past with sleepovers, I’m glad things are a bit better nowadays. Yes, I too worry sometimes about being a burden to people. And pretending to be ‘normal’ is really tiring (for my mind). If I’m solely with people who know me well, I don’t need to pretend, that’s the best. I’m glad things are a bit better with you mental-health wise :)!
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Thank you ❤ I understand, pretending to be 'normal' is something that I think almost everyone can relate to from at least one point in their life. I am very lucky to have the friends that I have, and likewise, I'm happy that you have friends that know you well too that you can be comfortable with as well. You also deserve to be surrounded by people that love and respect you, gaiaathena. You're one of the nicest people that I know 🙂
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So insightful. I remember the times when you’d come home and say you had a horrible time because of, I guess, not passing the test. I think your recent BBQ and how that went goes to show how much this has changed for you 🙂
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Yes, it was often for this reason. I had so much fun during that BBQ! I guess it was because I’ve really grown to trust my friends and be myself more.
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You know, I can relate to a lot of things in this post (in a slightly different way of course), like for example, preferring to watch others play a game rather than playing it myself, or try to pass the “test to impress” 🙂 🙂 🙂
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True, I guess a lot of these things are just a slightly different version of teen angst which quite a lot of people feel. Most people can relate to sometimes being a little quieter than others or trying to fit in. It feels good to know that there are others who relate to my experiences 💕🤗💕
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