I donāt usually say this but: Iāve been BOSSING it lately! Iāve been feeling positive, taking care of my body, working hard, and having the best time. So, I thought that this week Iād give you a slight peek into what my (awesome) everyday life is like as a disabled teenager.
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How I Move Around the House
Here is a video demonstrating how I move around the house:
Iām quite independent when Iām at home. It didnāt happen instantly, but in the years since my family moved here, I figured out clever ways to be able to manoeuvre through the house on my own. I know all of the best surfaces to swing from and the best pieces of furniture to climb up. I can dress myself, brush my own teeth, and take myself to the toilet ā which are all achievements of independence that Iām quite proud of.
There are still rooms that Iām not able to access though because my family bought the house before they realised that I was disabled. Itās weird to think that my own house isnāt wheelchair-accessible. Itās not a problem ā my home is one of my favourite places in the world. But itās weird to think of the little amount of time that Iāve spent in fully wheelchair-accessible buildings since my school and home actually arenāt.
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My Daily Responsibilities
I spend most of the day working on assignments from my online tutor. Graphic design is a real passion of mine, and while I already knew how to create art with my laptop, my online classes have taught me all of the technical terminology for design. Graphic design is just such a useful skill to have: when I wrote my first poetry collection, I was able to digitally draw the cover for it myself, and creating cartoon characters of my friends and family makes for fun and easy birthday presents.
I also enjoyed digitally sketching all of the headers for this blog, the logo, and the cartoon character of me that I created for my āIn My Feelingsā posts. I secretly love uploading an āIn My Feelingsā because every post is a new design challenge where I have to think about how I want to display the emotion of that post using my character. Once Iām finally done with my studies, I canāt wait to have more time to write my novel and design as much as I want. Iāve planned to make a set of drawings of disabled, Afrofuturistic women which I canāt wait to have enough time to digitally sketch. I hope to one day be good enough to design for other bloggers too.
Other than my online assignments, I have a freelance job as an editor for self-published books which I spend time on, and I work at my blog. Iām always either writing my own posts or reading and commenting on others. I do all of this by typing with a pen in my mouth, wearing blue-light blocking glasses, and listening to music that I love.
I used to struggle with work, but now, I love it. Iāve always been a perfectionist when it comes to my studies, Iām driven and hard-working, and I genuinely enjoy learning. These past few months have sort of been a breakthrough for me because my productivity level was the thing that struggled the most when I went through depression. Now, Iām happy to be back on my feet and working hard like usual.
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What I Do for Fun
My Schedule
Iām the kind of person who canāt really function unless they follow a daily schedule. Ever since I was a pre-teen, Iāve relied on schedules to help me organise my day. I like it ā it helps me to feel as if Iām in control.
The later in the day that it gets, the less productive that I am. So I enjoy fairly early mornings. I usually wake up at around 7:00. The first thing that I do is put a timer on my laptop and do an hour of reading. I absolutely adore reading every day ā itās one of my favourite things to do! If I didnāt limit myself to an hour, Iād probably keep doing it forever. I like a little bit of everything: classics (like Ray Bradbury, Edgar Allan Poe, and Jules Verne), young-adult (like The Hate U Give and Simon vs. the Homo Sapiens Agenda), and adult (Iām currently reading The Goldfinch by Donna Tartt, but Iām also a big Chimamanda Ngozi Adichie fan. It was actually her character, Ifemelu, that inspired me to start writing this blog! Although Chimamanda did make blogging seem much easier than it is in reality in her book)
Afterwards, I eat breakfast while I watch an episode of a show on Netflix (letās face it, itās probably an animated childrenās show that Iām far too old for), I have a ten-minute prayer and devotion, practise Spanish, brush my teeth, and get dressed ā then Iām ready to start working and to attack the day with a determined ferocity.
Exercise
I really enjoy exercise and working my body. Every day, I do a seated cardio work-out from the YouTuber Caroline Jordan. I highly recommend her work-outs. Theyāre accessible, with lots of variations for different disabilities (though it is mostly for those with low-mobility legs and hands). But the main thing that I love about her work-outs, is that theyāre not easy. Even though theyāre seated ones, theyāre still fast, extremely challenging, and are guaranteed to make you sweat (whether youāre able-bodied or disabled).
Her work-outs are also a fun bonding opportunity for me because I often do them with my mother. It can be hard to find physical activities to do together with my able-bodied family, which is another reason why I love seated work-outs: itās the first time that my mother and I can do the same physical sport at the same level with each other.
Here is a short, one-minute video of me demonstrating some of my favourite Caroline Jordan work-out moves:
Sheās great! Even though I canāt walk, Iām still able to work my body hard every day thanks to her. Here is a playlist that I made of my favourite Caroline Jordan work-outs in case youāre interested: https://www.youtube.com/watch?v=Gje8ySaAGLc&list=PLCd_B08ggn_Hdq-RDwki-Hsd9qIgtwhmC&index=1&t=59s
I also enjoy going on long walks with my mother. Wherever we go, I push myself in my wheelchair; and if youāve ever tried sitting in a manual wheelchair and pushing it yourself, you know that itās a work-out in and of itself. Itās about five times harder than walking and really works your arm and back muscles. I love wheelchair-riding: I used to go out every day by myself and think up story ideas while I pushed myself along, and I used to train with a professional sprinting wheelchair at the sports stadium near my house.
Learning Languages
One of my favourite things to do is learn languages ā I just love the academic challenge and the idea of being able to understand more cultures from around the world. I already speak two languages fluently, but I set myself a very difficult challenge this year to learn five. So, every morning I do fifteen minutes of Spanish practice, and after dinner, I do a thirty-minute practice of either French or German (on the odd days I do French, on the even ones ā German). While I eat lunch, I watch an episode of a Dutch TV-show just so that I donāt forget the language, and I do an additional ten-minute Dutch practice. Almost all of my family is either tri or bilingual, so whenever my sister showers me, we have a rule that weāre only allowed to speak Dutch so that we can both practise it.
My Daily Aches and Pains
Chances are that Iām always hurting in at least one part of my body. I get leg pains and occasional pain in my wrist from putting so much pressure on it all of the time. I also always have pressure sores from sitting down all day, which hurt the most and are my biggest risk of infection.
Night time is difficult. Because my legs canāt stretch out fully, I have to sleep with a pillow tucked under them and in-between them. My leg pain is the worst at night: I often struggle to get to sleep, wake up a lot during the night, or wake up in the morning with two throbbing legs. I have to stretch my legs before I sleep and I have to sleep on my side, but turning over can be hard. Itās not just me, leg pains are a sad truth for lots of wheelchair-users. Winter is tough too: the parts of my body that I canāt move become stone-cold, and covers and fluffy clothes donāt seem to work.
Most people are surprised when I tell them that Iām often hurting. I donāt talk about it or complain about it that much, because if I did, I would be complaining all day. Itās not that bad, and I know that quite a lot of people experience much worse. For the most part, I can just deal with the pain that I feel and not let it get in the way of my day unless itās really bad. Iāve known since the start that itās just something that Iād have to learn to deal with.
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And thatās it! Now you know what my day-to-day life is like. I havenāt mentioned it yet, but obviously, I also spend lots of time laughing and joking around with my third-eldest sister, my mother, and my father. Theyāre my best friends, and we all get on like peas in a pod. My other two sisters live in England, so I communicate with them and my friends from school online due to the coronavirus.
I couldnāt ask for more supportive parents and a sister who knows me better than anyone else. From my parents, I learnt to work hard and give my life everything that Iāve got; from my mother, I learnt how to be determined and resilient ā two traits that I wouldnāt be able to live without. And from my sisters, I learnt how to slay and boss my way through life like a true black queen. š
Thank you so much for helping me to get through my day-to-day. All of you. Whatās your favourite thing to do during the day? See you next week!
The Wheelchair Teen 
You are beautifulš
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Thank you so much, Aveline! ā¤
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I’m genuinely crying now. It’s so brave of you to let everyone witness your struggles in order to turn them into an inspiring process for those who are facing the same issues you have – and let’s be honest, even for those who aren’t. I’m feeling ashamed of myself now, because even if heavens know I don’t have it easy (also because I have a disabled person in my life as well – my husband is an amputee in his right leg since he was 4, and he moves around with two canes, plus he’s in a lot of pain, so the house is on me and I have to help him as well), I’m also the kind of person who feels easily overwhelmed, thinks “I’ll never be able to do this” and ends up not even trying. This applies to a lot of things that don’t even need a physically able body to get accomplished. So, watching/reading about all the things that you do to live your life to the fullest made me realise that there are times (lots of them) when I only make excuses for not even trying, and I should be ashamed (which I am now).
Sorry for making it all about myself, but I just wanted to tell you that your videos and your posts are for something, and you’re not only helping your peers, but also random people like me who don’t have to face what you do and still don’t know how to make the best of the hand they’ve been dealt Also, I wholeheartily agree with Adeline above š.
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I can’t thank you enough for this comment. It’s the only comment I’ve ever had that genuinely made me cry too. While trying to edit the videos for this post, my laptop was frozen twice for six hours and it kept shutting down again and again. It was such a hassle and I almost gave up on the whole thing. But this comment made every minute of that process worth it. I am taken aback by how impactful my words were to you, all I wanted from this blog was to inspire and move people. I’m so happy that this post seemed to accomplish that for you.
You shouldn’t feel ashamed, everyone learns and everyone grows. I never knew that your husband was also disabled, and I can understand how it feels to be easily overwhelmed – I used to be the same. I’d give up too easily or simply assume the outcome of a situation without trying it first. Resilience is something that I had to teach myself, and it wasn’t easy. I’m so happy that this post has inspired you to maybe think about things differently. And tell your husband ‘hi’ from me!
Thank you so much ā¤ You're beautiful too. And incredible. Never forget that.
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“this comment made every minute of that process worth it.”
I’m sorry to hear that you had to wrestle your computer for that, but it was!
“Iād give up too easily or simply assume the outcome of a situation without trying it first.”
Me in a nutshell LOL. Except that a person who doesn’t have to deal with a disability has got a huge advantage and should never forget that. But brains are a weird thing š.
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Sorry, Aveline.
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You are incredible. I wish I could type as fast as you. Thank you for giving me a glimpse inside your life. Iām so impressed with your schedule and being able to stick to it. Your work ethic is commendable. You will succeed in everything you do because you are not afraid to put the work in and sacrifice. Stay safe.
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Thank you so much ā¤ I have to work hard if one day I want to make a real change in the world. Even if I never see a day where I'm able to do so, I will still be satisfied knowing that I gave every moment of every day my all. Ha, it took a lot of years and hundreds of chewed up pens to get that fast at typing š
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What a great post! I loved reading about your daily schedule and I loved that you took videos for it too! I hope you will be able to do more design / art and writing in the future :). The art with on your blog is so pretty! It was really cool to see how you move around your house, and you edited so many clips together for that video! I love that you spent the first hour of your day reading. I love reading too, though I usually don’t read until a bit later in the day as I prefer to first get to my emails (and queue up anything that needs doing and/or replying to, for the day). Nothing wrong with watching a children’s animated show no matter your age, in my opinion (I read a lot of children’s books myself, among other books). The exercise sounds hard but good for the body, and I love that you do that together with your mum. I like going on walks too. Wow, it is amazing you speak so many languages! I love that. I have been taught some, but on the internet, most English-speaking people at least, don’t know that many. Since it’s been some time, I have forgot a lot, but it is very handy when ie. a family member asks me about something in ie. German and I can answer them. My first language is Dutch, I was taught English in school, as well as French, German, a bit of Latin and some ancient Greek (though I did pick the biology & chemistry package so I didn’t get taught as much French and / or German as some of the people who picked the ‘language’ package). After high school I started to read a lot more books in English so my English continued to improve, and of course having an English boyfriend since 13ish years ago, helped too haha (plus, I use(d) the internet a lot, and with many people online I communicated in English). And a lot of TV shows and movies are in English, so that I’m sure has helped too. Your family sounds amazing, I love that you have such a supportive family who all help each other out. It’s cool that you and your sister practise Dutch together! I’m sorry you have pain but I’m glad it is manageable most of the time, big hug. I understand what you mean about not telling people all the time that you are in pain. My boyfriend has chronic fatigue syndrome, and he has a thing with his ankles (basically walking hurts for him), he also isn’t going around talking about his pain all the time to everyone. Likewise, with my disabilities I am mentally tired so much of the time, but answering that I’m tired to everyone’s “how are you?” isn’t really understood well, so I don’t do that (though if it’s particularly bad I do mention it). I love the picture with you and Olivia at the end of your post!
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Thank you so much! It’s nice to see that there was such a positive reaction to the videos since they were sort of an experiment and different to the usual things that I do. Yeah, middle grade books are really cool, and some picture books can be awfully pretty. I don’t mind reading children’s books either. Wow, you have learnt so many languages! I don’t think that I’ve ever met someone who can speak Latin and Ancient Greek before! That sounds like a really awesome school system (no wonder your so smart XD) Yes, I also know a lot of Dutch people who have taught themselves English by watching English fiilms and TV – they can really help with language. That’s one of the ways that I learnt Dutch when I was younger. By the way, of course it’s always good to mention your fatigue or pain to others if it gets particularly bad. The people around you are there to support and help you. It’s just small constant pains that I tend not to talk about that much because there’s not much the people around me can do. Thank you for commenting! I really enjoyed learning more about you š
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This was a lovely post! Thank you for sharing. You are so talented. I really like graphic design too. I also applaud you on being so good with learning new languages! I have the Duolingo app but Iāve been neglecting it ): I do hope to get back and learn some more languages soon. I also just subscribed to your YT channel š„°
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Thank you! ā¤ It's cool that you also like graphic design. Yeah, having the motivation to learn new languages can be difficult. I got the Duolingo app around two years ago but only started using it properly recently. Thank you so much for subscribing to my YT channel too!
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I actually took 1 graphic design class in college! I do wish I did more with that. Yay, good luck with getting back to those languages š„° Youāre welcome!
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Inspiringš Thank you for sharing.
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You’re welcome š Thank you for commenting!
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Hehehe I know quite a lot about your daily life but it’s been great to see you put your schedule together and start seeing it through every day! I didn’t know you’d started working on French too – I thought it was just the Spanish and German! Keeping secrets? š Feeling excluded from the walks… AGAIN (I am just teasing ahaha) and love the first photo of you with the glasses and us at the bottom as well ā¤
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Thank you š Yes, I felt a little too shy to tell you that I was learning five languages. At least now you know!
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Such an inspiration. You are super talented. Keep up the good work. All the very best to youā¤ļø
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Thank you so much! I really appreciate the compliment. All the best to you too! ā¤
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šš¤
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Such a wow post. So good to meet you – The so very Incredible Wheelchair Teen šš
Love you and your routine and your talents.
All my love and blessings šš¤
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Thank you so much! It’s great to meet you too. Take care ā¤
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My pleasure my young friend. My grand daughter would be entering her teens in a couple of months and I have shared your post with my children.
Love and hugs š¤
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That really means a lot. Thank you so much for sharing my posts. I hope that it’ll be able to help and inspire your granddaughter.
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Stay strong. Stay loved
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Thank you for choosing to follow my blog! I really appreciate your support! Iām looking forward to reading more of your blog!
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Thank you ā¤
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Good Morning from Atlanta, GA. I’m a special ed teacher in high school. I work with a young man who is in a wheelchair as well. Like you, he’s the only student in a wheelchair at the school. I think it would be great for him to speak to someone who’s going through the same thing. Is there a way for him to contact you?
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Good morning! I would love to help by connecting – it’s also a rare experience for me to meet other people in wheelchairs who are my age. My email is: thewheelchairteen@gmail.com, but just in case that doesn’t work, there’s extra contact information at the bottom of the page. Thank you for reaching out and don’t hesitate to ask if you need help with anything else. š
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I read your account and watched your video with interest. You are succeeding brilliantly in adverse circumstances because you have the spirit and the intelligence to use the resources you have to your advantage. Hopefully, things will get easier over time. The support of your family is a huge plus! I think the biggest factor in your favor, though, is that you know how to “seize the day!” ā¤
My late husband, Drew, broke his neck at age 16 and was a quadriplegic. He lived for almost 30 years with his disability. Defying all the odds, he lived a very accomplished life. He graduated from Harvard Law School and Stnford Medical with a degree in Health Services Research, was a White House Fellow, and wrote regulations for the Americans with Disabilities Act of 1990. Drew worked in the White House and for Senator John McCain and taught Health Law at Florida International University in Miami. He had a 29-page resume of speaking engagements and publications. We were together for 18 years and adopted 2 children from Russia. Drew had a great sense of humor and was a very devoted father. The kids used to ride all over Miami Beach on the back of his motorized wheelchair when they were young. He often took them to their doctor's appointments and karate classes.
We spent a month in the Netherlands in the late 1980s, where he did research and wrote a book about the healthcare system in your country. We both very much enjoyed our stay in the Netherlands.
You remind me a lot of my late husband, and I know you have what it takes to succeed in life. You can read about Drew on Wikipedia: Andrew I Batavia. There is also a biography available on Amazon, Wisdom from a Chair by Andrew I Batavia and Mitchell Batavia.
All the best! Cheryl Batavia ā¤
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Thank you so much ā¤ Wow, your husband sounds absolutley incredible. I've done a lot of reading about the Americans with Disabilities Act, It's amazing that he wrote regulations for it – it sounds as if he helped multiple lives. Thank you for telling me about him, I can only hope one day to make as much of a difference as he did. I've been wondering about a lot of things recently like – if I have children, can I take care of them? or Will I be able to go to university in the future? Reading about your husband and his life has really helped to ease my worries about these. There are so many possibilities out there – thank you for showing me some of them.
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Wishing you a great future! I have every confidence that you have what it takes ā¤ Cheryl
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You my dear, are so inspiring, beautiful and a treasured soul. ā¤ļøā¤ļø Loved reading your post, your routine, your graphic designs, your love for animated cartoons (I too love themš), your cluttered bookshelf and everything about you. š
Keep it up, keep inspiring and be safe. Take carešŗš a good day to you š»š¤
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Thank you so much Samreen, that really means a lot. ā¤ I am glad that you enjoyed reading the post so much. I promise to keep it up – I hope to one day be able to make a real change in the world by inspiring others. I hope that you are having a wonderful weekend and staying safe too. š
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My pleasure always dear ā¤ļø I wish you loads of luck and the great work you are doing, you really would bring about a huge change. You really are inspiring all of us my dear, š¤
I am dear one ššŗ
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U look sooo pretty š. Really love those braids .ā¤ļø
Have a nice day !!
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Thank you so much! I really like multi-coloured braids. I hope that you have a nice day too š
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You are one cool lady!
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Thank you! š
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You remind me so much of a friend of mine who was on the opposite end of the age scale from you. He was born with a condition called arthrogryposis, which meant his joints were all frozen–knees and elbows bent permanently. His friends pulled him to school in a wagon. His mother started him with a pen in his mouth as early as possible. The difference between him and you is that he couldn’t move around. Someone had to be there for much of his care. But over the years he invented ways so he was able to do certain things on his own such as answering the phone, setting up his toothbrush so he could do that by himself. He was an artist and member of the The Association of Foot and Mouth Painting Artists. I didn’t know him until he was older.
I was thrilled to see how much you are able to do on your own. You are to be commended for your tenacity and determination to do everything for yourself that is possible. May the Lord bless you and direct you.
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Thank you so much ā¤ Wow, your friend sounds incredible. I've actually never met another person that writes with a pen in their mouth, nor had I heard of the The Association of Foot and Mouth Painting Artists. They sound extremely interesting, I'm definitely going to do more research on them, thank you for introducing them to me.
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Here is a link to MFPA in Canada. It is an international organization, but I could only find web site from Canada. https://www.mfpacanada.com/pages/artists If you scroll down to Ontario, you will see Susie Matthias who I have met. In the background of her picture there is a photo of my friend Myron Angus. He died in 2004 at 78 years of age.
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Thank you! I did a little research after your first comment and, from what I read, they’re an incredible organisation. I’m so happy that something like this exists. Yes, I can see Susie Matthias. I’m so sorry that he died.
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I just had this video sent to me by a friend and thought you might enjoy it. https://www.youtube.com/watch?v=vzjuQoNM534
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Yes! I remember when this advertisement was on TV. But I’ve never seen the full version before so thank you. Honestly, I just watched it and it’s made me cry – it’s rare that I feel proud to be disabled. Thank you so much for showing it to me and giving me that incredile feeling.
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Thank you so much for sharing so much! Your work ethic and endeavour to try new things is awesome. I often find myself tentative when it comes to pushing out of my comfort zone very fast, but you dive right out there.
Life is to be lived, and you are certainly doing that. Your videos give great insight and were really fun too. š
We have a choice every day, to choose to work hard and move towards making our dreams a reality. We won’t be able to make that choice every day, but if we all showed up with the passion and perseverance you do, we’d get a lot closer sooner.
Thank you again for being so open about life. Go well into this coming week! š
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You’re welcome, I’m happy that sharing about my life has had such a positive impact. I’m also glad that you enjoyed the videos since it was one of my first times putting together videos specifically for my blog. You’re right – how we spend the day is usually up to us, and we can choose whether we want to work hard and making something of ourselves or let life make the desicions for us.
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I appreciate reading your story. You are encouraging and inspiring. I love your drawings.
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Thank you very much. I’m happy that you found the post to be encouraging. š
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I found your blog from a link on Offbeat YA, and as soon as I came over, I thought, “Wait, is this Olivia’s sister?” Hahaha! I didn’t know you were a blogger too! It’s nice to “meet” you. Thanks for sharing your experiences with us and letting us see your daily routines through your own eyes!
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XD Yes, I’m Olivia’s sister. She’s certainly helped me a lot by showing me how to blog and helping me to grow my audience. It’s nice to ‘meet’ you too, I’ve actually seen you commenting on other blogs but it’s nice to meet officialy. You’re welcome! – I thought that sharing my experiences might give others an insight into what a non-able bodied life looked like.
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Inspiring!!!
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Thank you so much! ā¤
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That’s what I like so much about us Homo-Sapiens, our ability to adapt.
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Indeed, there are always other ways to do things. All you have to do is be creative enough to find them so that you can overcome the obstacle. Thank you for commenting!
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you are truly wonderful, beautiful inside & out. much appreciate your sharing you lovely day as well as your amazing spirit with us ā¤
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Thank you ā¤ Your words truly mean a lot. You're welcome, I'm glad that you enjoyed it! Have a lovely day xxx
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This was really interesting to read. Youāre so brave and even though I donāt know you, Iām super proud of you. You seem like an amazing person and I canāt wait to read more of your blogs. I just started my own blog, and I hope to write about something similar. I donāt have a physical disability, I actually have a neurological disorder. I was diagnosed with ASD and ADHD when I was eight and itās made going to school really hard. I wonāt bother you with all of that haha. What Iām trying to say is, youāve really inspired me. Thank you ā¤
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Thanks a lot, Jay ā¤ Your comment truly means a lot. What's the name of your blog? I'd love to check it out! Being neurodiverse can be really difficult – it's actually something that I'm trying to educate myself more on since it's just as important to know about as physical disabilities, Aw, I'm so happy that I inspired you! ā¤ And it's an extreme pleasure to meet you so thank you for commenting and telling me a little bit about yourself.
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Reblogged this on Love and Love Alone.
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You are so brave and talented dear! Keep it up ā¤ļø
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Thank you so much! š
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My pleasure ā¤ļøš
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