Introduction

Curious to know what life is like as a teenager in a wheelchair?

When I go outside, most of the people in wheelchairs that I see are either elderly or adults, and there don’t seem to be many blogs out there on the internet about how experiencing normal teen issues like puberty and school can be like for someone who is in a wheelchair. Therefore, The Wheelchair Teen is about my life as a black, disabled teenager growing up in a foreign country surrounded by predominantly able-bodied people. (For those who don’t know, ‘able-bodied’ is a term that refers to everyone who isn’t disabled) I hope I will be able to provide a new, unique perspective of teen life to a lot of people, but I also hope other wheelchair teens will be able to relate to some of the issues I’ve noticed and the personal experiences I will be sharing. Although I may write in a somewhat formal and stylistic tone sometimes (it’s the Literature geek in me) I am most definitely still a teenager and most of what I write will be about events which occurred in my life between the ages of eleven and sixteen, which is pretty much where I’m at now. Make sure you comment or email me at thewheelchairteen@gmail.com if you have any questions or suggestions for anything in specific you would like to see or hear about on this blog.

I also hope that during the course of this blog you’ll be able to approach it understanding that everything I talk about is just life. Some of the issues that I address may be ones that you don’t have to face in your own life, but I’m not an alien or a disembodied voice that dies after every post and only comes back to life for the next one – I live a normal life, eating, sleeping and breathing same as you. If you don’t approach it that way, everything I experience becomes easily dismissible because you can never truly imagine it happening. I’m just a (mostly 🙂 ) ordinary human being sitting behind a laptop in a room with purple painted walls sprinkled with cheap, paper-cut-out posters, hammering away at the keyboard.

My Setting

I’m writing this blog from the Netherlands, which is where I’ve lived since my family moved here from London when I was two. I’m the youngest in a family of six (four daughters) who were all born and raised in England. When you think Netherlands, don’t think lively and… ‘modern’ Amsterdam, think more village-y Holland. We live in Waalre (I’m supposed to say: ‘we live in Eindhoven’ because even most Dutch people don’t know about Waalre. Eindhoven is more well-known and we do live close to it because its where our school and city centre is but, to be honest, we don’t actually live there) surrounded by a mixture of modern buildings and animal farms. Cycle for a minute and you’ll encounter a herd of bison, another minute and you’ll pass a huge month-old hotel, another and the path will stink of aired out horse dung.

I go to an able-bodied, international, English-speaking school where I am the only person there who is in a wheelchair. Therefore, going to the school has most certainly been an adventure that comes with its ups and downs. I can speak Dutch fluently but I still grew up British watching shows like Balamory and Coronation Street, eating Malted Wheaties and calling my parents Mummy and Daddy (I still do). I guess I should mention the fact that I’m black too (all four of my grandparents are from Jamaica and moved to England in the 20th century) which is just great for when it comes to feeling included: if I’m among disabled people then I’m the only black, English-speaking person amongst them and if I’m among black people I’m the only disabled person there.

My Disease

I was born with Serious Progressive Axonal Polyneuropathy, but don’t try to look it up – There’s absolutely zero information about it online. It may be a bit of a mouthful but that is the name of the condition that the doctors have given me for the last couple of years – even I don’t really know what it means, but there you have it.

The effects of my disease are:

My bent legs
  • I’m in a wheelchair and can’t walk because my legs can’t stretch out
  • I have no control over my knees, lower legs, ankles, feet or toes but some control over my upper legs which I can use to wriggle and manoeuvre the rest about.
  • I have no control over my wrists so they flop around like a limp, double-jointed doll
  • My fingers are permanently curled inwards but I can still grip things with my left hand which isn’t very helpful seen as I’m right-handed
My limp wrists and curled, limp fingers

I wasn’t always like this though – because my disease is progressive, it means that I started out the same as any other child but gradually my disease started to progress and I got worse and worse losing more and more function in my body (I only lost the ability to walk around the age of thirteen). The doctors don’t know if the progression will stop or how fast it will happen or… anything really. I could wake up paralysed tomorrow for all we know. So while other children were going through puberty, my body was slowly deteriorating and wasting away. No one else in my family is disabled and apparently the disease is incurable.

You see, the thing about being disabled and growing up in a foreign country is miscommunication with doctors. My father once even accidently filled out a form incorrectly before an operation because it was written in Dutch and he doesn’t speak the language. Luckily, the doctor caught the mistake quickly otherwise that operation could have gone VERY badly. My disease is extremely rare, but the problem with this miscommunication is: the name that the doctors have given me could just be a bad translation from a medical term in Dutch to English because there is no information about it online and I’ve never seen anyone, on TV or in real life, who has ever looked like me or had my disease. How can that be possible? Sometimes it feels like I’m the only one in the world with my specific condition. 

Image Citations: https://kamernet.nl/en/for-rent/apartment-waalre/willem-de-zwijgerstraat/apartment-1666308

54 thoughts on “Introduction

    1. Thank you so much for reblogging this! It really means a lot! I’m glad that you are able to relate to my story. I try to write with honesty so that my tale can, hopefully, impact others positively – it’s all there, the good, the bad and the ugly, so that I can show my challenges and how I overcame them.

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  1. Wow! Thank you for opening up your story and my eyes to a glimpse of your life. I look forward to reading more and learning more about you. My son spent a year in Utrecht, so I went to stay a while 2 years ago. My kids grew up in London, where I taught inner-city, but we are in Nottingham now. Blessings. x

    Liked by 1 person

    1. Thank you for your kind words. It’s cool that you spent time in both the Netherlands and London – they’re both beautiful places for different reasons. It means a lot that your interested in my story. 🙂

      Liked by 1 person

  2. I’m so glad you are able to write this blog and share your story because it is enlightening to someone like me who has no idea and can only imagine what life is like for you. I love your positivity and enjoy reading your blog posts. Keep posting 😊

    Liked by 2 people

    1. Thank you so much for this comment – it really made me smile 🙂 It means a lot that my story is enlightening to you because I hope to educate people with my experiences to make this a more understanding and accepting world when it comes to people like me. It’s heart-warming encouragements like this from people like you that help me to mantain positive and continue to do just that.
      I hope that you have a lovely day!

      Liked by 2 people

  3. Thank you for sharing about your life with us! I always find it enlightening when I read or get to know people with different perspectives. Can’t wait to sit down and read the rest of tour blog!

    Liked by 1 person

    1. Your welcome, 🙂 I’m happy to share my perspective and hopefully teach people a few things that they may not have known before. I’m glad that you enjoyed it and I hope that you’ll enjoy the rest too.

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    1. Thanks for the encouraging words. I’m so happy that I have this blog and that I’m a part of this online community where people make me feel happy and tell me not to give up. It’s honestly such a joy and is so uplifting so thank you for your kind words.

      Liked by 1 person

  4. hi there luv, i just want you to know how amazing you are as a person and to praise your talent in writing. i am in awe of how strong you are. Thank you for sharing your stories to us. You are an inspiration to all of us. We will for sure learn a lot from your blogs. You’re so young and yet you’re doing great things. How about that? applause!

    This is your safe zone dear. Be free. Tell us everything you are comfortable with. We’ll be here, reading ❤️

    Liked by 1 person

    1. Thank you so much for this comment – It’s really sweet! It means a lot that you called me strong and an inspiration: all I want is for people to learn and be inspired to change because of my writing. Never in my wildest dreams did I imagine that my small, young voice could mean so much. I promise to be as free and honest as possible – I’ve always been grateful for the security and strength that this blog has provided me with, and it means even more knowing that you’ll be reading. 🙂

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    1. It’s nice to meet you too! I really like your blog. I’ve never heard of SMA, it must be quite rare. Just the fact that we’re both wheelchair-users means that we probably have a lot in common when it comes to social experiences though. I can’t wait to read more from you!

      Liked by 1 person

  5. I am too greatly impressed with your writing. We all, I am absolutely sure, are your friends and want you to write more. You are gifted, no, you are talented, and you should think of creating a book, maybe of short stories because you are perceptive and have already the objectivity and quirky sense of humor, that all great writers share.

    Joanna naturetails.blog

    Liked by 1 person

    1. Thank you so much. That really means a lot. I am actually an aspiring author and hope to one day be able to write books with positive disabled representation to help raise awareness. Thank you for calling my writing quirky and humorous. 🙂 No matter what I talk about, I still aim to make it interesting. Thank you for commenting!

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    1. Thank you so much for reblogging my post! I truly appreciate you helping me to share my story with others. I’m happy that you were able to relate with my post – you can probably understand the life that I live more than most since you used to take care of a disabled teen too.

      Liked by 1 person

  6. Thank you so much for being vulnerable enough to share your story and help others understand. You speak so eloquently and your spirited endurance definitely shines through. You should be proud. I won’t claim to understand what life is like as somebody who isn’t able bodied but I do understand what living with illness is like. My partner has a lung condition that affects one person in a million. As he jokes, he well and truly won the genetic lottery! To this day I’m still learning new things about his life and what impact his illness has on everyday things. He has a trache and is often hooked up to a respirator. We’ve been together two years and I had the shock of my life when he showed me what using that trache was really like. I had thought it was a small thing but it was literally inserting a huge tube into a really big hole in his neck. He’s lived with it all his life so found my reaction amusing but I’d just had no idea.

    Anyhow, I’m so happy I found your page and can follow along with your journey as of now! x

    Maryam
    https://infinitelyadaydreamer.com

    Liked by 1 person

    1. Thank you so much! Wow, your partner sounds great, I couldn’t imagine what it’s like to use a trache either. It’s cool that he’s used to using it. Living with illness can be tough, I’m glad that you’re able to relate. I’m looking forward to having you along with my journey and I can’t wait to see more of you too since I subscribed to your website. 🙂

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      1. Indeed. It’s funny how as people we can get used to anything if we live with it for a considerable amount of time! It either becomes second nature or just something that comes with us. You are such a beautiful soul and I know I’ll learn a lot from your writing. Thank you so much for the follow! x

        Liked by 1 person

  7. Pleased to meet you! Good for you for opening up and shouting to the world about your life experiences. I love the way you write. It’s engaging and mature, and your personality shines out from your words. I’ll be popping back for more 🙂

    Liked by 1 person

    1. I’m pleased to meet you too! Thank you so much for showing an interest in my writing, I’m glad that you enjoy it so much. I thought that it was important to share my life experiences because not many people know about disabilities or what it’s like to live with one. I subscribed to your blog and I also can’t wait to read more from you too. ❤

      Liked by 1 person

  8. Hi..you liked one of my comments on someone else’s blog and that’s what led me here. First of all, when I started reading, I was shook. I was truly speechless. I don’t know if I felt sad for you or truly happy to be inspired from you. I myself am a teen( just turned 13 in this July 2020) and I recently started my cooking blog. I am so stunned to see that after all that happened, you built a whole new life for yourself. Keep going and keep growing..how old are you by the way? And I had a tiny doubt though. If you can only use your left hand then how do you type?

    Liked by 1 person

    1. Thank you so much for your kind words, Aarushi! I’m happy that my words inspired you. Don’t worry, you don’t need to feel sad – my life may be different from yours but I just find different ways to do things and overcome the challenges that I’m faced with. Wow! I’m impressed that you started a cooking blog at just 13-years-old! I really like cooking blogs so I just visited yours and now I’m subscribed to you as well. I can’t wait to read more from you! Instead of typing with my fingers, I type with a pen in my mouth. There is a short, one-minute video of me showing how I type with my mouth here if you’re interested: https://thewheelchairteen.home.blog/2020/01/26/how-to-write-with-a-pen-in-your-mouth/

      Liked by 2 people

      1. Your most welcome! Ya like i said earlier, I am very stunned today we that you have found your own little ways to do things in life. Thank you so much for subscribing. And I look forward from reading in your blog. Wow! That’s very innovative. I would never have thought about it ! Well I’m glad to see the video too.take care and good luck!

        Liked by 1 person

  9. I read this post after reading your post about participating in the 10K for a charity. You are an amazing young person and definitely more of an inspiration than you can ever imagine.
    I have a chronic illness, but I have found ways to be more healthy and have not ended up in a wheelchair or even walking with canes. I do understand what it feels like not to be understood, though. When a person appears to be able bodied but is actually struggling, people just assume that that person should be able to do what everyone else can do.
    It inspires me to see you being so brave and working hard to overcome. Keep up the good work!
    I agree with the blogger above who encouraged you to write books. I think it would be great if you could publish a children’s book; perhaps if children were better educated in the challenges and triumphs of others, they might grow up to be more understanding adults.

    Liked by 2 people

    1. Thank you so much, I truly appreciate your words. Yes, you have what some people call an invisible disability. People often don’t take them as seriously merely because they can’t see them which is extremely unfair because they can be just as difficult to live with. When someone with no visible disability walks out of a disabled toilet, I try not to be too judgemental because I know that not all disabilities are noticeable from the surface. I’m happy that my story was able to inspire you. I am planning to write a novel with disabled representation, actually it was multiple people commenting on my blog who inspired me to do so! I’m going through the planning process now and hope to start writing next year since I’m quite busy with my studies now. I completely agree with you about the education of young children – that’s why I’ve given numerous presentations to children about disabilities. They went so well that the person who invited me to do them has asked for me to do more, to even more classes, so I’m very excited about that. I wrote a post about it on my blog if you’re interested: https://thewheelchairteen.home.blog/2020/09/06/my-first-educational-talk-to-children-about-disabilities/ Thank you so much for your support and your incredible comment ❤

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    2. I agree, Ruth, that’s a great idea!
      I have a friend who is blind, and he wants to write a children’s book to help kids understand his life. It’s about a white cane moving through town – by itself! Because according to him, when people encounter him that’s all they see. I think at the end the person finally appears, and everyone is surprised that there has been a person there all along.

      Liked by 2 people

  10. I just read this introduction, because from your other posts I wanted to know more about you. You said you are a “book nerd.” I would love to send you a set of my books. I have a fictional trilogy that was written for readers your age, and a nonfiction called “BARRIERS (So, if prayers are so powerful, how come mine don’t get answered?)” I believe you would be my first reader in the Netherlands 😊 If you’re interested, email me at bascha3870@yahoo.com.
    I’m glad I “discovered” your blog today. You are an excellent writer! (I am a highschool English teacher and very lucky, so I don’t say that to many people, especially your age. 😏)

    Liked by 2 people

      1. The trilogy is called “AWAKENING.” The three books are entitled “Counselor,” “Vision,” and “Sparrows.” The main character is a young American woman, 22, who meets a remarkable man who has cerebral palsy and is legally blind. As she gets to know him (and love him) questions start to arise as to who exactly this person is …? My publisher compared it to the “Twilight” series, except it isn’t about vampires! It’s more of a “Predawn” – the light grows brighter instead of fading. 😉 The story tells of the young lady’s coming to Christ, discovering who she is in the Body of Christ, and learning spiritual warfare in the midst of 9-11. It’s partly autobiographic. 😉

        Liked by 1 person

  11. How thank you so much for sharing your story and your setting about you. This has been so interesting to read and to learn so much about Serious Progressive Axonal Polyneuropathy, I was truly gob-smack . I don’t know if I felt sad for you or truly happy to be inspired from you. I am a teen and I have been following your journey love reading your post and want to thank you for supporting and commenting on my post I love to get questions it’s the best feeling when left a comment or like. Thank you so much for being you hope we can become good friends. I am so stunned to see that after all that happened, you built a whole new life for yourself. I was wondering how did you adjust to living in Netherlands and did you remembering living in London and one more question how different is society in Netherlands?

    Liked by 1 person

    1. You’re welcome! I’m happy that you found it to be interesting 🙂 Don’t worry, you don’t need to feel sad – my life may be different from yours but I just find different ways to do things and overcome the challenges that I’m faced with. You’re welcome for the comments – I genuinely enjoy reading your blog. Your posts are always fun and put a smile on my face. And us teenage girl bloggers have got to stick together! I hope that we can be friends too 🙂 I can’t remember living in London but we visit it every holiday for months each year so it feels as if I know what it would be like to live there. Netherlands is quite different but all in a good way – the streets are cleaner, there’s almost no litter, it’s beautifully green, the land is completely flat with no hills… Also, English culture is very intergrated into Dutch culture. They pretty much only play English songs on the radio and English films in the cinema and almost every can speak English here too. The biggest culture shock would probably come from the food which is VERY different, the language is quite rough and harsh on the tongue, and the celebrations are quite different too. Actually recently we celebrated Sinterklaas which the Dutch celebrate instead of Christmas. I woke up to find my shoe outside of my door with a giant chocolate letter S in it (one of the Sinterklaas tranditions).

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