Ever since I was a child, I’ve been able to go up and down the stairs in our house by myself. Whether it was by climbing up the staircase like it was a mountain (which I used to do when I was younger and was still able to walk), or by going up backwards on my bum by pulling myself up with my arms (which I started doing when I became a teenager and lost most of the mobility in my legs) – It didn’t matter what time it was in my life, I always managed to figure out a way to conquer the steep, twisting staircase that led to my room on the first floor.
However, around three weeks ago, a stairlift was installed in our home. At first, I was miserable: It felt like I was losing a fight by giving up on yet another thing that I used to be able to do for myself; like I was letting go of more of my independence; and more importantly – like I was taking away more of my freedom of movement which means so much to me. Even though it took me a while to accept it, eventually I realised that it’s okay to take time to adjust to new changes, and that accepting more help doesn’t always mean that you’re failing or losing a fight:
If you know me, you know that if I can move – I do move. Not being able to walk can make you feel like all you do is sit down all day and stay still. Especially when you’re at my age – as a teenager, I just want to work off all of my energy by cycling and moving around like all of my other friends do. So, I can become ‘frustrated’ (I sort of panic and start to shake all over) if I don’t move enough in a day because it makes me feel trapped – trapped inside my low-mobility body.
]Feeling trapped inside your own body can be awful, so when I go on walks with my mother I take whatever opportunity I can to push my wheelchair myself or to move around downstairs on my own. Therefore, when the stairlift was installed, I wasn’t thrilled at the idea of losing one of the main pieces of exercise that I do at home – going up and down the stairs.
We decided to get the stairlift because I was starting to experience wrist pain from constantly relying on them throughout the day: I use them to pull myself up on chairs and beds, to shuffle across the floor, and to pull myself up the stairs. The stress on my wrists from doing the latter was getting to be a little too much, not to mention the fact that I also had painful pressure sores on my bottom, and constantly banging them on the stairs as I went down them was only making my sores worse. My mother and I had talked about getting a stairlift for a while but I thought that it was going to be one of those things that we talked about but never really did. Imagine my surprise when, at the start of April, she said that she’d already paid for it and that it was going to be set up in just a few weeks’ time.
The stairlift turned out to be… not what I expected. Since our staircase has a turn in it, the stairlift isn’t actually built up against the wall. Instead, it follows a track like a rollercoaster so that it can spin around the two turns in our staircase. It was truly quite terrifying to ride it for the first time because it makes a lot of noise and shakes at certain points. I couldn’t stop thinking about how easy it would be to slip out of it and fall down the stairs. Also, I’d just spent the previous week researching rollercoaster accidents and rides that travelled on tracks without anti-roll mechanisms, resulting in catastrophic collisions. It seemed rather ill-timed that merely a week later I had my own mini ‘rollercoaster’ installed in my home, it was almost as if the universe was taunting me.
It took weeks of using it before I stopped feeling scared and we had figured out all of the issues regarding how I was supposed to get in and out of the stairlift which was rather high off the ground. Along the way, I realised something: I was a teenager, it was my birthday in a few days, and I had just had a stairlift installed in my house. What would happen when I turn twenty-five, would I have a hospital bed installed? Receiving the stairlift felt like taking a step backwards, like a loss in the constant battle I’m waging against my disease by surrendering yet another of my abilities; It felt like a failure. Also, you only ever see senior citizens using stairlifts in the media and I didn’t like the negative connotation of helplessness and decay that came with it.
But after three weeks I had to admit to myself that it was easier to go up and down the stairs using the lift – I no longer had to fear the long, hard trek upstairs after watching a late-night film on the TV in the living room. Yes, I wasn’t able to go up and down the stairs by myself anymore but, in a way, I was given a different sort of independence. Now, I could go up and down as I pleased without tiring myself out. I know that I can be stubborn when it comes to my disability: I can’t do much, so I become extremely overprotective of what I can do by insisting that I do it without any help. But I need to learn that receiving extra help here and there doesn’t make you incompetent. It’s actually a gift, because it shows that you know yourself and what you can and can’t do.
It has been an emotional few weeks and I admit that I have shed a few tears over this. As a teenager, receiving a stairlift can be a rather big pill to swallow. Ever since I lost the ability to walk by over-relying on my wheelchair, I’ve felt scared of relying too much on devices that I don’t really need to help me out. Luckily, my family always knows what’s best for me and has been with me every step of the way as I accepted this new change in my life.
The stairlift may have thrown me off my axis a little, but I’m beginning to find my balance again and learn to live with it. After all, it’s only a tool. I wish that there was more disabled representation in media so that I could have seen more young people using stairlifts when I was growing up. Maybe that would have helped to make it look less big and scary when it came to how it made me feel when I used it.
I’m beginning to find out that receiving new devices to help me out with my disability is like swallowing a disgusting pill: I may detest it at first, but eventually it might start to help me and I may even grow to depend upon it. I just have to trust those around me who know what’s best for me and trust in myself to know my own needs, limits and capabilities. In general, new changes can be hard to adapt to. What new changes have you recently encountered in your life? How did you overcome them? That’s all from me, see you next Sunday!
03:53, 16.05.2020
The Wheelchair Teen 
Love your writing, you’re very articulate at such young age 🙂
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Thank you so much! I guess it’s my love for literature and reading that has helped me to refine my writing.
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Great post! It’s nice reading about your experiences and thoughts on the stair lift. I agree that we need much more disabled representation in media and see young people using a stair lift. Big hugs. I find coping with changes difficult, especially if they are unexpected changes. I’m happy that your family is so supportive of you. I too have a supportive family. I wish you a nice Sunday!
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Thanks for the hugs. 🙂 Indeed, media normalises everything, and what it seems to be normalising right now is a world where disabled people don’t exist which makes them stand out even more in real life. Unexpected changes are difficult: I usually try to deal with them by thinking of myself as a soup. Life can throw all sorts of ingrediants at you, sometimes expected, sometimes not, but no matter what we have to find a way to adapt to the new ingrediant and make it a part of ourselves. I’m glad that you have a supportive family too, they can mean so much when you go through hard times.
I wish the best for you and your supportive family. xxx
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It’s hard to get our head round things we think we don’t want or need. Happy for you that you have accepted this change in your life and that it is making things easier and less painful for you. Julie
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Thank you, that means a lot 🙂 Yes, it can be difficult to accept things like this, but it really is making a difference so I’m glad that I did.
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That lift looks really state-of-the-art! In January I broke a bone in my foot and suddenly the stairs became a huge challenge – I know what you mean by the mountain, cos the toilet is up my very steep, narrow stairs – there was another option available to me (because to be honest I thought my shoulders and wrists wouldn’t manage the stress!) – my other option was hands and knees… I became quite adept at this, but suddenly the knee said “No more” and inflicted such pain that I couldn’t kneel down at all – only now is it beginning to allow me to kneel again. My foot has just about healed – I am very grateful – but it has made me seriously consider moving into a bungalow. I will consider your point though – maybe I need to persevere, cos age is against me?
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I’m sorry to hear about your broken foot – I’m glad that it started to heal. If you think moving into a bungalow would be easier then by all means – go for it! No one knows you and your abilities like you do and making changes doesn’t mean that you’re giving up and not persevering. Like I said in the post – ‘receiving extra help here and there doesn’t make you incompetent. It’s actually a gift, because it shows that you know yourself and what you can and can’t do.’ I hope everything works out well for you and your foot. xxx
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I have followed your blog young and fearless teenager. Your posts are very well written and that is why i am following. Blessings
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Thank you 🙂 It means a lot that you think my posts are well-written, and thank you for calling me fearless – it really made my day.
Blessings to you too xxx
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I’m trying to think of new changes I have had I’m drawing a blank. But I do remember my neighbor had a chair like this when I was little, for an outside set of stairs. It looked truly terrifying. And I remember once we checked on her as we didn’t see lights on for a week and it turned out her lightbulbs went out and she didn’t want to ask for hope because she was upset she couldn’t do it herself – but she was thankful my mum came and changed them. It’s very little things that we take for granted and then I think really rock us when they are changed – just like you said in this post. Loved your honesty about how this has impacted you ❤️
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Thank you for taking the time to comment. I love the story about your neighbour with the outdoor stairlift – I think that I can understand that woman, no matter how ludicrous living in darkness for a week may seem. I’m glad that your mother was able to help her though, even if it may be hard to ask for help, we can still be happy when we recieve it. That’s why, even though I wasn’t sure about the stairlift at first, I’m still happy that I recieved it because it wasn’t what I wanted but it was what I needed. Thank you so much for sharing this story with me. 🙂
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I can imagine how horrified you must have felt at first. I’ve always been vehemently opposed to having a stairlift too. Lucky for me, I now live in a ground floor apartment and won’t be needing one. Ever.
And I agree, it sucks how media always likes to portray disabled people as elderly and preferably completely helpless. That’s not a proper representation of reality.
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It’s rare that I get visitors who are also wheelchair-users (let alone ones that are also from the Netherlands!) so thanks for stopping by and commenting. It’s cool that you can understand and that you were able to find a ground floor apartment to live in. It’s my dream to one day enter the Media/Literature world so that I can write good disabled representation for books and TV shows. More representation would really make such a difference and I’m tired of seeing problematic or just plain bad representation. The disabled community deserves better!
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That would be great. There’s so much need for good representation, and you write well. And now that Marc de Hond died, we have one voice less to speak out for us. 😦
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I hadn’t considered in-depth before how little media representation there is for wheelchair users, and you’re so right to point out that when there IS rep it’s typically only showing elderly people, when that isn’t the case at all in reality. I can’t even think of the last time I saw a prominent wheelchair user in TV or film that wasn’t an elderly person.
I’m on the autism spectrum and I always notice how representation of autistic characters in media is so terrible/one-dimensional as well. There’s definitely a big issue with disability rep especially when the stories aren’t #ownvoices!
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I completely agree – I think that our society’s lack of better and more frequent disabled representation is a huge issue, and one that not enough people are talking about or considering when they create books/TV shows. More representation would make a huge difference to how we’re viewed – and even how we view ourselves. That’s why I’m going to do everything within my power to create my own disabled representation in whatever I write, and to sign up to review disabled rep written by able-bodied people to make sure that it’s acceptable. I plan on writing a post about this soon, but I’m glad to see someone else who shares my frustration about inaccurate representations.
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Hello – I know your wonderful sister Olivia through book blogging.
My mom also has a very hard time with stairs and recently got a stairlift. It took her some time to adjust to it, but now she uses it all the time. Her staircase also has a very sharp turn in it, but it’s not as steep as yours. I can definitely imagine that using yours for the first time was scary!
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It was – It felt like riding a tall rollercoaster with no handlebar or seatbelt. Luckily, I was able to get used to it, and I’m happy to hear that your mother was able to do the same for hers as well. I’m so happy that you know Olivia! (she is pretty wonderful, isn’t she? 🙂 )
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Hi, I couldn’t help noticing you said you’d like to cycle like your friends – well you probably can. Did you know you can get an attachment for the front of your wheelchair which converts it into a handcyle? You can take a look at my post for more info – even if it’s just the images which make sense right now. https://inclusive-cycling.org/2018/10/05/cycling-for-people-with-limited-lower-limb-mobility-getting-started/#types
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No, I didn’t know that! I’ll definitely check this out, thank you for reccomending it to me. My only issue is that my fingers are curled which also makes me unable to grip things without help. Would I still be able to use the attachment?
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Not sure where you are but these are the kind of things I’\m thinking of: https://quest88.com/collections/other/products/gripmits . Good luck!
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Simone, I would not say that you ‘I lost the ability to walk by over-relying on my wheelchair.’ That’s definitely a misconception! We can talk more about that if you want. BUT I am so glad the stairlift helps you and that you got used to. Yes, it’s a tool and I am glad it gives you more independence ❤
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Thank you 🙂 I know that it may not be the case, but it is hard not to think that way. Thank you for talking to me about it though, my default has always been to blame myself for the progressions of my disease.
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