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

Published by thewheelchairteen

I am a black, disabled teenager living in the Netherlands, book nerd and film fanatic. I love blogging about my own crazy life and expressing my opinions about the society around me :)

36 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.

      Like

  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

  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 1 person

    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 1 person

  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!

      Like

    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. 🙂

      Like

      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

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