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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

Asking the ‘BIG’ Disability Questions

One of my older sisters used to care for disabled children when she was younger. She once told me about a disabled child who had approached her and asked her: “Will I ever be able to get better?” My sister told me that she didn’t quite know what to say – especially since the child’s disability was a more permanent one than most, and caused the girl to not be able to walk or use her wrists and fingers. Even though I wasn’t there when this exchange occurred, the sad look in my sister’s eyes when she told me about it made it a moment that I’ve never forgotten.

I think it’s because I know what it’s like to think about those kinds of questions: Questions no doctor, parent, or carer can truly give you an answer to. Important, life-changing questions, which are often tinged with a slight sense of wide-eyed innocence and curiosity like that girl had. ‘BIG’, uncomfortable disabled questions; the kind that every disabled child thinks about. Sometimes people answer with statistics, some with science, but the most honest answer is almost always: “I have absolutely no idea. And there’s no real way of knowing.”

Here is an example of eight such questions:

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(1) Am I more likely to die earlier because of my disability?

This question is the one that inspired this blog post: Last week, for the first time in my life, someone asked me if my disability could kill me. The answer is no, but still – it got me thinking. I’ve heard stories of people with disabilities dying at extremely young ages due to medical complications. According to a study done in Asia, there is around a twenty-year gap in-between the average life expectancy of disabled people and the average life expectancy of non-disabled people (source in the research citation below).

This statistic doesn’t scare me much (as statistics rarely do) but it did make me think about this question for the first time. The truth is, I might not be able to live as long as my grandmothers who are still around today spending time with their great-grandchildren. But I also might – no one knows what the future holds. That’s what makes it an answerable, head-scratching, ‘BIG’ disability question.

(2) Will my condition get worse (can it get better)?

This question is one that worries me the most, especially as someone with a progressive disease. I went from basically being able-bodied to losing the ability to walk, having my fingers curled, and losing my ability to grip objects or use my wrists. The question is: will it get any worse? I have faith in the state that I’m currently at, and my condition hasn’t been this stable for a while; but at the same time, I know how easy it would be to wake up tomorrow with another part of my body shut off from me. I’d do anything to get an answer to this question – to not have to worry that in a few years I might lose even more of my independence. I try to treasure the use of my arms and my upper legs every day because I know how easy it can be to take things like that for granted.

Over the years, some doctors have tried to tell me that there is a small change that my condition could improve in the future. I doubt that this is true in my case – I know my body too well. But I’d love to be surprised.

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(3) Can I have children? Will they be disabled like me?

From what I’ve read online, it seems like this is a question that quite a lot of disabled people wonder about. I faintly remember a doctor telling me that there’s a large chance that, if I choose to have children, they will also have my genetic condition. So at least I know that it is possible for me to have children. They will probably have my disability, or a more severe version of it, but I don’t care about that. I wouldn’t mind having a disabled child – and I think that I’d be able to give them valuable advice on how to live life with one based on everything that I’ve experienced.

Anyway, even though I know that it’s a long way off: if I do decide to have children in the future, I want to adopt. Not because they might be like me, but because I know that there are already so many children out there who need help. And because the idea of pregnancy does not appeal to me at all. I wouldn’t mind adopting a disabled child though. Naturally, this also comes with the question: will I be able to copulate? It’s one that has made all of my Sex Ed teachers flustered when I ask it.

(4) If I do have children, will I be able to take care of them myself?

I often wonder about this question. When we visit people who have just welcomed a baby home, I often need help to hold the baby since I’m not able to grip or cradle things. The idea of not being able to hold my own child in the future is a disheartening one. I can’t change nappies, I can’t cook or prepare food, I can’t clothe other people. I probably won’t be able to care for my own children or be left alone in a room with them without help. I’m okay with my partner doing most of the work, but it’s sad to think that I might have to hire a babysitter for when I’m alone with my children.    

(5) How will I look when I’m older?

This is something that I started to think about when I was twelve-years-old. One of my friends became shocked the first time that they saw me with shorts on. They said: “Oh, you’re so disproportioned! Look how skinny your legs are! That’s so creepy.” I hadn’t noticed it before, but since I don’t have as much muscle in my legs – they are quite skinny. Now, as I’m starting to grow older, I wonder if I’ll end up looking drastically disproportioned. It’s clear to see that some of my body parts are growing while others are not.

(6) Will I ever be able to live on my own?

The answer is yes – but probably only if I’m rich. In order for me to live by myself, I’d have to hire someone to cook my meals, someone to help me dress, to help me wash, and to help me use the toilet, as well as someone who can help me to maintain the house by doing chores for me. If not, then I need to live with someone who is willing to help me out with all of this. And if I’m living with them – then I guess I’m not living alone. I love my parents, but I truly hope to be able to move out and become independent someday.

(7) Will anyone ever love me?

Don’t get me wrong – I know that I’m loved dearly by my friends and my family. But will anyone ever want to date someone like me? I’m not the kind of person who feels as if life is worthless without a romantic relationship. I don’t need someone out there to complete me – I already have everything that I need to live a great life within me. I won’t search for love, but if it finds me, then I wouldn’t mind it.

The question is: will it ever find me? My family assures me that it could happen, but seeing as most people my age tend to steer clear of me, it doesn’t look very likely to me. Because of my disability, I would probably be a rather demanding person to love. And while recently I’ve learned to love my body, it’s still hard for me to think of myself as ‘attractive’. After all, disabled girls are rarely represented as such in the media

(8) Will I be able to be hired by a firm?

A picture from the BBC show Employable Me

I started to think about this question when an advertisement for a BBC documentary came on the television about disabled people who were being paid less, or were being flat-out refused by companies. I burst out crying after I saw it. No one had told me that it might also be harder for me to get a job than most other people. It was the icing on the cake for me when I had my depression: it was official, I was never going to be able to live a life.

While doing research for a future blog post about disability and crime, I also discovered how unaccommodating the legal system could be to people in wheelchairs. Serious cases were getting dropped by wheelchair-users because they were being humiliated by the system and because some courts refused to instal ramps or lifts so that they could even enter the building and get the chance to speak their minds. In general, it seems as if the future is going to be quite difficult for someone like me to get by.

I do feel slightly better about this question now that I have my first job. I’ve learnt that there are so many online careers and opportunities to choose from (including this blog). I also know not to be so scared of the future, no matter what it takes, I will find a way to live my life to the best of my capability. No matter how much people deny or refuse to accommodate things for me. I have my fists raised, and I’m ready to do battle with my future.

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😊

Now you have an idea of some of the questions that swirl around in the mind of a disabled teen. The future used to be the scariest thing in my life. But now that I have my first job as a freelance editor and I’m starting to feel more positive about life, I realised that I’m making my own future.

I can’t help thinking that I might have approached some of these questions differently if I had grown up around more disabled representation. If we showed more disabled people as parents, or as entrepreneurs, or as romantic partners, then I would have some idea of what these things looked like and wouldn’t be so uncertain about them. I know that I talk about it a lot, but this is yet another example of why representation is so important.   

That’s it from me! Have you ever wondered about any of these questions or questions like these? See you next week!

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Research Citation: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6678634/#:~:text=Between%202004%20and%202017%2C%20life,and%204.6%20years%20in%20women

Image Citations: https://www.pagepersonnel.nl/en/advice/career-advice/interview-tips/tough-interview-questions-and-how-answer-them, https://www.123rf.com/photo_101375865_stock-vector-disabled-man-in-wheelchair-reading-a-book-rehabilitation-of-disabled-people-concept-vector-illustrat.html, https://nl.pinterest.com/pin/423479171201611951/, https://www.bbc.co.uk/programmes/b09hzr2r 

The Sunshine Blogger Award

This is my first blogger award! And I would truly like to thank EllesUnpopularOpinions for thinking of me enough to nominate me for this great award. Even though it may have taken me a while to get to it – I still extremely appreciate the nomination. You can visit Elle’s blog by clicking on her name.

The Sunshine Blogger Award is given by bloggers to bloggers who inspire positivity and creativity while spreading sunshine in the blogging community.

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Rules

  1. Thank the blogger(s) who nominated you and link back to their blog.
  2. List the rules and display the Sunshine Blogger Award logo in your post and/or on your blog.
  3. Answer the 11 questions the blogger asked you.
  4. Nominate up to 11 new blogs to receive the award, write them 11 new questions and notify them about the nomination.

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Questions

What food have you never eaten but would really like to try?

All of the food from the book Does My Head Look Big in This? by Randa Abdel-Fattah. The main character is a sixteen-year-old Australian Palestinian-Muslim and all of the food that her family cooked sounded absolutely delicious. They often mentioned eating rice curry with warm yogurt which is something that I would truly love to try.

What social stigma does society need to get over?

Pretty much everything to do with female bodies: Society definitely needs to get over the ridiculous stigma around menstruation. They also need to stop discriminating against women’s sizes and saying that women can’t have hair on their bodies like men for absolutely no reason other than: ‘because that’s the way society likes it these days’. It’s fine if women want to shave their hair because of their personal preference, but I don’t like people judging me for deciding to keep my body like how it is naturally.

What are you currently worried about?

Finding out that I’m actually not that good at writing, or that I don’t have what it takes to finish an entire book. I want to write books with good disabled representation more than anything else – I just hope that I have the talent and determination to be able to fulfil this dream.

Who was your craziest / most interesting teacher?

Probably Ms. J: She was just so laid-back and awesome. She’d freak us out with pictures of STD symptoms, show us a range of spider-webs done by spiders on different drugs, and talk about homosexual animals. I learned so many interesting biology facts that year, and the best part was that after all the learning was done, she’d play Werewolf (our favourite game) with the entire class. 

What “old person” things do you do?

Well… I can list all of the family members from The Waltons? I grew up watching classic shows like The Waltons, Little House on the Prairie, Dallas, Diagnosis Murder, Columbo, Matlock, Minder, and Murder She Wrote to name a few. I therefore probably know much more about old TV than I should and still enjoy watching it sometimes because it reminds me of my childhood. I also watch British Soap Operas like Emmerdale and Coronation Street with my parents on the weekend which is probably the most ‘old person’ thing that I do.

What makes you roll your eyes every time you hear it?

“I can’t hit a girl!” Ugh…

What riddles do you know?

Well, I’m a Gollum fan so:

Voiceless it cries, Wingless flutters, Toothless bites, Mouthless mutters.

The answer is wind.

What’s your cure for hiccups?

To wait until they’re gone. I don’t get hiccups that often, and when I do, I usually only hiccup once or twice and then they stop.

What are your most important rules when going on a date?

‘Don’t go to a restaurant.’ The weird thing is that I’ll probably still end up going to a restaurant for my first date because it would be the ultimate test for me to see if my partner would love me for me – messy face and all. I’d only go on a restaurant date if I already knew them a little bit though, NEVER for a first impressions date.  

What are you interested in that most people aren’t?

I’m a rather big fan of children’s television which means that most of the shows that I like are ones that make people laugh in my face when they hear what they are. The good news is, I can sit down and watch shows with my four-year-old second-cousin, and I’d probably be more invested in the story than she is. When I’m at home, on the rare occasions when the remote gets passed to me, my father doesn’t even have to ask before turning it over to the children’s channel for me. Don’t judge – after a full day of bleak news on the TV and angsty teenage hormones, nothing beats the endlessly hopeful and positive mood of a children’s TV show.  

Post your top 10 most used emojis (no skipping!)

According to my phone:

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My Nominees

Diary of a Disabled Person whose blog is a biographical look at disability in the 21st century

disABLEd Mummy who writes about her life as a disabled mother to two children

My Rockin Disabled Life who writes about life with a physical disability

Gourmet Spoonie Daan Katz is a wheelchair-user who shares delicious recipes

Dawnfanshawe who shares poetry and writes about caring for Alzheimer’s

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My Questions

  1. What was a defining or significant moment in your blogging experience?
  2. What’s your favourite place that you’ve ever visited?
  3. Who’s your favourite disabled or neurodiverse character?
  4. What’s one thing about society that angers you?
  5. Do you love or hate poetry (or are you somewhere in the middle)?
  6. What was the last thing that made you smile?
  7. What’s your favourite quote?
  8. Name one thing that’s always guaranteed to help you relax.
  9. What’s your number one tip to new bloggers?
  10. If you could choose a best friend to bring to life from any book that you’ve read or film or television series that you’ve watched – who would it be?
  11. What makes your blog special?

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Image Citation: https://ionimage.nl/sunshine-blogger-award-nomination/

Accessibility vs. Preservation

This is just going to be a short discussion post. Instead of talking a lot, I’d like to leave room for you to join the discussion and express your own opinion in the comments below.

The issue of Accessibility vs. Preservation is one that me and my family discuss every time that we go abroad for the holidays: It’s the issue of whether we should prioritise the preservation of historical sites and attractions, or if we should prioritise changing them to make them accessible (by installing lifts, ramps, etc.)

Just to give you some context, here are some of the oldest places that my family and I have visited that were either fully wheelchair-accessible or mostly wheelchair-accessible:

A picture of me at the Colosseum
  • The Vatican, the Colosseum, St. Paul’s Cathedral,
  • The Megalithic Temple of Malta (the second-oldest free-standing structure on earth), the megalithic Hunebedden in the Netherlands,
  • The Louvre, the Notre Dame, the Versailles Palace, the Eiffel Tower (we didn’t get to visit the last two, but we did see that they were wheelchair-accessible),
  • Canterbury Cathedral (lots of cathedrals),
  • Ancient tunnels, old cave structures, and abandoned underground settlements (I actually visited these while on Disability Scouts Camp),
  • I’ve been inside war trenches with my wheelchair, and I once even went inside a deep, underground war tunnel (but only for a little while because I was quite scared XD)

These are just all of the examples that I could think of off the top of my head, but I’m sure there are many other historical sites that my family and I have visited on our travels that were wheelchair-accessible.  

However, we’ve also visited plenty of historical sites (or indeed, entire historical towns) that weren’t wheelchair-accessible. I can definitely see arguments for both sides: I do believe in the historical preservation of old sites – But I can also understand how important it is to make these places accessible for everyone to be able to visit. I’d hate to think of part of a historical site being disturbed to make space for a lift – But, as a major history nerd, I also know how disappointing it can feel knowing that there are some incredible places that I’ll never be able to see. I’m so torn!

If it was just me, I’d rather leave these sites like they are instead of disturbing them just so that I can see them. But it’s not just me – it’s one billion people around the world who are also disabled and are only able to visit accessible sites. But isn’t preserving centuries worth of history more important than the enjoyment of our modern generation? Once again: I have no idea. 😊

Personally, I haven’t formulated a completed opinion on the matter – that’s why I’m so interested to hear all of your thoughts. Remember, there’s no right or wrong answer: just different opinions.

I’m extremely curious to hear: Do you think that we should prioritise the preservation of historical sites and attractions, or if we should prioritise changing them to make them accessible? And why?

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Image Citation: https://www.kissclipart.com/eiffel-tower-png-clipart-eiffel-tower-champ-de-mar-0repag/

My First Educational Talk to Children About Disabilities!

I mentioned in an earlier post that I was preparing to give a presentation to younger students in the school about disabilities. Well – I finally did it! And, honestly, it turned out to be one of the highlights of my year.

One of the primary teachers at my school approached me with the idea of giving a presentation to educate children on people with disabilities after reading certain posts on my blog. She was angry at some of the ableism that I had faced and wanted to help me make a difference by educating the younger generation. The plan was for me to give a thirty-minute presentation to four different groups of ten to eleven-year-olds: I’d have around twenty minutes for the actual presentation and then ten minutes to answer questions.

I started to freak out as the date of the presentation drew nearer. I truly wanted to do this presentation right, and I knew that what I was going to say would probably have a big impact on the kids. My brain shut down the day before and I almost called the whole thing off. Luckily, my sister and mother helped me to calm down and convinced me to go through with it. On the day of the presentation, I took a few calming breaths, discarded most of my wooden-sounding notes, and entered the first presentation with nothing more than a few pictures, a piece of paper, a pen, and a heart full of passion.

I surprised myself with how easy the words came and how natural I sounded. Of course, I still followed the plan that I had made, but most of what I said came from the heart instead. I loved watching the children as I made my talk. You could see the transformation in their eyes from the moment I first rolled into the room: At first, their curious eyes scanned every part of me, examining me and my foreign body with caution. But by the time the presentation was over, they all looked at me normally, like I was just another student at the school. Like I was their equal, and they had nothing to fear. Before I had even heard any feedback, I could see, physically, that my words were having an impact on the way that these children viewed and accepted me.

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Some of the Things That I Talked About

I split the presentation into different questions like: ‘What are disabilities?’ And ‘Why are some people disabled?’ I answered the latter by saying (from rough memory): “Most people think that people can only be disabled by accidents like a car accident or falling from somewhere up high and hurting yourself. And, yes, some people are disabled because of accidents – but actually, a lot of people are simply born disabled.

So, the answer is: because we’re all different. Look around the room. Some people can be born with blonde hair, others with brown hair, some people have black skin and some have white, people can be tall, or people can be short. Well, just like that, people can be born with two arms and two legs like most of you in here – Or they can be born with only one arm, or only one leg, or maybe they’re born with curled fingers and legs like me. There is so much variety in the world, and we’re all different, but at the same time – we’re all human underneath. So: when most people see me, they assume that something happened to me or that there’s something wrong with me – But really, there’s nothing ‘wrong’ with me: I’m just different.”

I also told them a little bit about my own life story: like how instead of crying every day after I lost the ability to use my hands – I taught myself how to draw with a pen in my mouth. I showed them some of my drawings and even gave them a little ‘mouth-drawing’ demonstration which they really loved 😊.

Me showing them one of the drawings that I had drawn with my mouth

In addition, I taught them about the way that I was treated in society and why it was tough. My blog came in very handy, as I was able to steal and use some of the advice that I had already written on here about how to approach disabled people.

I altered the advice so that most of it was in a way that they could understand. For instance, I talked about disabled children in the playground and how you shouldn’t be scared of them and should invite them over to play, how you should ask them their limits, and how you can be creative in how you include them, etc. Other than that, a lot of it was trying to make them understand how it would feel like if they were treated differently because of their bodies by giving them more examples that they would understand. Like how bad it feels to be stared at or pointed at on a bad hair day.

I ended by showing them some examples of disabled representation in children’s media and the disabled toys from my Christmas post. It was great seeing their reactions to the toys, and many of them had seen the shows that I talked about. It was handy doing the presentation so many times because I was able to remember phrases that had worked well during the previous presentation so that I could make sure to include them in the next one. Some presentations worked better than others, and some audiences were more willing to interact – But either way, I truly felt as if I was positively impacting the children. When someone like me enters a room, it’s often an experience that is rarely easy to forget, so I used that to my advantage.

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Their Reaction

One of the best parts of the presentation was at the end when the children asked questions. The questions that they asked were such intelligent and sophisticated ones, about society and my life. There were practical questions like how I used the bathroom or how I got onto aeroplanes with my wheelchair; some children wanted to know if they, or people that they knew, could be considered as disabled; and there were some deep questions about my life and my feelings. That day was actually the first time that someone asked me: ‘If you could be cured? Would you want to be?’ I had never even considered that until then!

I told the students that they were free to ask me anything – anything at all. I love answering questions from children because it helps to educate them. There’s nothing that a child could ask that would insult me – it’s all just curiosity. I did tell them that not everyone would be as willing to talk about their disability as me, but that they should still be brave enough to ask and find out for themselves. Because the best source to find out things like this is from disabled people themselves.

After the presentation, the teacher gave me drawings and letters that the children had made for me. Every single letter meant so much to me and filled me with joy. Some of them had made incredible drawings of characters in wheelchairs, some had written saying that when they were older, they wanted to invent devices to help disabled people, some promised to include a character in a wheelchair in their next story. It felt incredible to see all of these young people so interested in the disabled community. I think it’s safe to say that if a disabled girl joined their year (grade), she’d have a very different experience than my own.

So yes, even though it sounds obnoxious of me – I’m proud of what I did that day. I’m proud for giving it a try even though the presentations that I had previously done to my own class went so badly. I’m proud of myself for speaking so openly, despite being a shy and awkward person. I’m proud because, even though my presentation probably won’t mean anything to some of the children after a week’s time, it still felt as if I had done something important that day.

My new dream is to keep giving talks, to keep trying to change things through more presentations, my stories, and my blog. I love giving my community a voice, and I’ve decided to devote my future career and my life to it. It might sound silly and insincere coming from a teenager: but I’m not going to stop writing and speaking until I feel like real change has happened. And believe me, feeling as if you’ve ‘made a difference’ is an extremely rewarding and absolutely exhilarating feeling to experience.

See you next week!

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Image Citation: https://clipartstation.com/angst-clipart-2-2/

‘Hanging Out’ as a Disabled Teen

‘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.

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?

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.

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.

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. 😊

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Image Citations: https://www.123rf.com/photo_29214453_stock-vector-illustration-of-teenage-friends-hanging-out-together.html, https://www.reddit.com/r/eddit/comments/el0yyz/i_saw_a_pantless_guy_run_down_ill_chse_him_down/, https://www.freeimages.com/premium/angry-cartoon-toilet-180800, https://www.shutterstock.com/ko/search/asian+friends+eating+chips, https://www.canstockphoto.com/disabled-child-in-wheelchair-watching-22689622.html, https://friendlystock.com/product/little-girl-putting-shirt-on/, https://www.dreamstime.com/illustration/house-maze.html

How to Create Disabled Representation in Sci-Fi and Fantasy

It’s time for my first Disabled Representation Tip! This tip is going to be about creating (physical) disabled representation for science-fiction and fantasy worlds. I’m going to do three things: teach you how to make a disabled representation for such a world, tell you some things to watch out for, and then show you some cool examples. Today, I’m focusing mainly on some of the ‘disability superpower’ tropes such as Super Wheelchair and Cyborg Prosthetic Limbs (which are mainly used in sci-fi) and the Blind Seer (which appears a lot in fantasy).

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1. How do you Interweave Disabilities into Sci-Fi and Fantasy Worlds?

One of my favourite places to see disabled representation is in fantasy and sci-fi – I love seeing all of the creative ways authors and screenwriters include disabilities in their worlds. My main advice on how to do this is simply: be creative! But to help you build a strong, realistic, and relatable disabled representation, I created this simple three-step plan. Obviously, it’s not always necessary to follow this plan, but it will help you to know the basics if you have no idea where to start. You can create a mind-map or a list for each step if you’re more of a visual person (like me).

  • Think about the disability that you want to include in your story: think about all of the items that someone of your chosen disability may need to get around, and how that disability would affect their day-to-day life.
  • Now think about the world that you’ve created: think about the parameters, rules, and inventions of your world. Also, consider the society of your world and how different people get treated there.
  • Then put both of these side-by-side: how would this disability look considering the parameters and rules of your world? Take all of the items that someone of your chosen disability may need to get around and think about how the inventions of your world would re-create them. Also consider how elements of their everyday life with their disability would look like if they lived in your world, and think about how people in the society of your world would treat them and why.

Basically, it just takes some imagination, a little research, and some rationalisation. If you view real life with a disability as English, and the fantasy or sci-fi world that you’ve created as another language: then the process of interweaving a disability into a sci-fi or fantasy world is like translating English into a different language – You take everything from an ordinary life with the disability and then ‘translate’ it to fit within the rules of your world.

Don’t forget that creativity is the most important part of this process: think up clever and creative alternatives that will make your representation special. The only reason that I created this three-step plan is because it’s the best way to ensure that your representation is still realistic and relatable, to help you make sure that it’s not problematic, and to help you avoid erasing your character’s disability.

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2. Something to Watch Out For

The most important thing that you should try to avoid when creating this type of disabled representation is accidentally erasing your character’s disability. This is often done by Giving Character’s Powers That Cancel Out Their Disability:

I already talked about this a little bit in My 5 Tips to Authors Who Write Disabled Characters post. Basically, if you give a cyborg arm that works even better than an ordinary arm to a character with a missing limb, or if you give a blind character enhanced senses which makes them able to technically ‘see’ the world better than others, then you run the risk of potentially erasing that character’s disability. This shouldn’t be your goal because characters who have their disabilities cancelled out by technology or superpowers are difficult for disabled readers to relate to (because they no longer experience any of the same things that someone in real life with their disability would experience).

Cyborg

Imagine being disabled and trying to relate to a character like Victor Stone as Cyborg from Teen Titans. How could you? The guy’s practically superhuman. This doesn’t mean that there’s anything wrong with Cyborg or any other character with an erased disability, I just personally wouldn’t count them as examples of disabled representation. Remember, the way that you choose to interweave disabilities into your world shouldn’t be a means to cure them, but merely a means for your world to be able to include them.  

How to Avoid This

Following the plan that I showed you is a good way to avoid erasing a character’s disability. This is why I included the step of considering what the everyday life of someone with the disability that you chose would be like – because their life in your world should still contain many of the same elements.

I once wrote a fantasy story with a character that couldn’t walk. She had magical powers and therefore she simply sat on a small wooden plank and levitated it to get around. However, it took a lot of effort for her to levitate, much more effort than walking (like pushing a manual wheelchair) and she’d often have to stop for breaks if they were walking far so that she could re-charge her powers (like stopping to plug in an electric wheelchair). She also still experienced things that people who sit down all day experience such as pressure sores and leg pains. The story is quite rubbish since I wrote it when I was only thirteen, but I was still already starting to grasp the concept of ‘interweaving’ instead of ‘erasing’ disabilities.

So, if you’re thinking of creating a character with a Super Wheelchair with rocket-power speed and a built-in microwave – that’s awesome! But maybe the wheelchair still can’t go upstairs and needs to be plugged in to charge every day. Maybe instead of a guide dog, your blind character has an IA robot that helps them to navigate their everyday life? Maybe instead of reading lips, your society has futuristic glasses for deaf people that can scan people’s lips and generate subtitles for the user? But the user has to be looking at the lips of the person speaking for them to work. Be creative and realistic – a strong representation will contain a fine balance of both.

A Cool Example

Mimori Togo

Say what you will about the character Mimori Togo from the anime Yuki Yuna is a Hero, but I absolutely love how the creators of the show interweaved her disability into her magical transformation. Mimori has no use of her legs and has to use a wheelchair to get around. Yet, when she transforms into her magical battle form, her legs are still immobile. Instead, her suit uses long tentacles that keep her above the ground and help her to move around and jump without using her legs:  

The tentacles on Mimori’s suit help to keep her off the ground so that she doesn’t have to use her legs

Mimori’s suit helping her to jump and lower herself into shooting position:

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3. Some More Cool Examples for Inspiration

I’m now going to show you some more examples of wheelchairs, prosthetic limbs, and blind characters in sci-fi and fantasy for inspiration. I’m only showing these three because I wanted to stick to the subject of the Super Wheelchair, Enhanced Limbs, and Blind Seer ‘disability superpower’ tropes which I’ve been discussing.

Here are some examples of fantasy and sci-fi wheelchairs:

(Sorry that most of these are animated examples, I’m quite a big fan of animation. Professor X’s hoverchair in X-Men: Days of Future Past and the children’s grandfather’s helicopter chair from Spy Kids are some live-action examples)

These wheelchairs range from old wooden or metal chairs to technologically-advanced ones with rocket boosters. A quick tip: If your fantasy is set in medieval times, I would recommend doing some research on how early wheelchairs looked, or how disabled people in the past used to get around. Avatar: The Last Airbender is a show set in the past, so Teo’s wheelchair is made out of wood in a sort of wheelbarrow style. Mayor John’s wheelchair is also an example of an era-appropriate chair since it is made out of rusty metal and styled in the same way as most of the town’s mechanisms.

I especially like the ingenuity of the character Finnegan: Finnegan comes from a world of monsters and creatures. Since he has a mermaid tail, he’s not able to walk around like the rest of his friends and therefore uses a wheelchair. Even though he doesn’t have a real-life disability, he’s often underestimated, and his classmates don’t trust him enough to know the limits of his own abilities. So, they fuss over him and don’t allow him to do the potentially-dangerous extreme wheelchair sports that he loves. Even though Finnegan is not your average example of disabled representation, as a child, I found that I could relate to him and the way that he was treated a lot. He is a good example of both realistic and creative representation.      

Prosthetic Limbs:

There are MANY examples of enhanced limbs from all sorts of media. But I wanted to stay away from cyborg limbs because of what I explained earlier, but also just because it’s something that’s been done so many times before. Instead, I wanted to talk about Hiccup and Amberlily. I wanted to mention Hiccup because he’s another example of an era-appropriate disabled character from fantasy because of his metal prosthetic limb.

On the other hand, Amberlily is from an underwater fantasy world where everyone needs to swim to get around. However, she was born without arms and struggles to swim with just the use of her legs. Therefore, she uses an underwater wheelchair with a propeller to move about. She controls the chair with a joystick that she moves with her left foot. Amberlily is a reminder that cyborg limbs don’t always have to be the only option, and she’s also a creative way to have a wheelchair character in a fantasy underwater world.   

If you’re still rather keen on using cyborg limbs – that’s perfectly fine. Just make sure to think of ways to keep it realistic and relatable. Maybe the user still has to remove them before they go to sleep? Or maybe the limb occasionally runs out of charge and performs like a normal prosthetic until it’s able to be charged again.

Blind Seers:

There are many different ways to do blind characters other than giving them enhanced senses, but I still thought that I’d give you examples of some Blind Seers. Toph (also from Avatar: The Last Airbender) can ‘see’ by feeling the vibrations in the ground with her earth powers, but she can’t use this ability in water or on sand which makes sense of course. Even though Ray Charles from the film Ray isn’t a fantasy character, I think that he’s still a rather accurate description of how real-life blind people use their other senses to navigate the world. He’s a good example of a real-life ‘Blind Seer’ and he even explains the technicalities of how this works in reality. I hope that these examples were able to inspire you.

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That’s it for this tip! I hope that you enjoyed the first post of this series. Please tell me if it was useful or if you have any other questions, suggestions or queries. My next Nugget of Wisdom post will be a review based on your recommendations. I can’t wait until then. Good luck with being creative!

Image Citations: https://www.anime-planet.com/characters/mimori-togohttps://nl.pinterest.com/pin/71283606579933983/https://www.nytimes.com/2016/09/21/arts/television/review-speechless.htmlhttps://www.elle.com.au/culture/isaac-sex-education-george-robinson-22908https://www.hobbydb.com/marketplaces/hobbydb/subjects/toph-characterhttps://dc-and-marvel-megaverse.fandom.com/wiki/Oracle_(DC_Universe)https://www.amazon.com/Hello-Goodbye-Dog-Maria-Gianferrari/dp/1626721777/ref=as_li_ss_il?ie=UTF8&qid=1521682081&sr=8-1&keywords=hello+goodbye+dog&linkCode=li2&tag=booksforlittles-20&linkId=d4f8bd9c15983603de7af7d3e576bccbhttps://www.usajacket.com/product/freddy-freeman-shazam-jacket/, https://www.reddit.com/r/TheLastAirbender/comments/gzca7r/teo_is_one_of_my_favorite_secondary_characters/, https://disney.fandom.com/wiki/Felix_Renton, https://monsterhigh.fandom.com/wiki/Finnegan_Wake, https://rango.fandom.com/wiki/The_Mayor_of_Dirt, https://toarumajutsunoindex.fandom.com/wiki/Kihara_Byouri, https://howtotrainyourdragon.fandom.com/wiki/Hiccup_Horrendous_Haddock_III_(Franchise), https://www.tagesspiegel.de/politik/kuenstliche-intelligenz-wer-seinem-pc-gram-ist-hat-ein-rationalitaetsproblem/23013292-3.html, https://hero.fandom.com/wiki/Cyborg_(Teen_Titans_2003), https://tvtropes.org/pmwiki/pmwiki.php/Main/SuperWheelChair, https://www.dreamstime.com/stock-illustration-comic-book-character-cyborg-ape-creature-original-image46700468, https://in.pinterest.com/pin/618048748847249053/, https://www.shutterstock.com/ko/search/%EC%9E%94%EB%94%94%2B%ED%95%98%EB%8A%98?section=1&image_type=vector&search_source=base_related_searches, https://www.youtube.com/watch?v=uqryJb7Lh8o, https://www.youtube.com/watch?v=wmDETun3d8c, https://aminoapps.com/c/anime/page/item/togo-mimori/kvtQ_IrWwB1bvzZDLgr04XRrrlgaL, https://yuyuyu.fandom.com/wiki/Togo_Mimori, https://www.drivethrurpg.com/product/156055/JEStockArt–SciFi–Young-Female-Agent-in-Wheelchair–CNB, https://www.zerochan.net/2601389, https://nl.pinterest.com/?show_error=true

I’m Back!!!

Hey, Wheelchair Teen readers, it’s been a while but I’m finally back. A lot has been going on lately: school ended, I lost quite a lot of files from my laptop after it experienced a software issue which meant that it had to be professionally wiped, and I’ve also gone through quite a few mental struggles:

As a child, I struggled to come to terms with the fact that I was disabled. However, when I started secondary school, I learned to accept my disability and have accepted it ever since. Of course, I had some difficult times with it, but I assumed that accepting my disability was a hurdle that I was well and truly over.

This past month I’ve had to learn that even after you’ve conquered your demons and have lived for years without them – they can still come back and haunt you. Recently, I’ve been struggling with coming to terms with the fact that I’m disabled again. It came out of nowhere and hit me unexpectantly hard. I’ve been finding it increasingly difficult to feel comfortable with my own body and love myself – I sometimes feel like clawing at my own skin and stepping out of my body, and it’s been driving me crazy. All it takes is seeing someone walk down the street, or seeing my sister jogging, to make me burst out crying in jealousy and to start hating myself.

I’ve decided to go back to seeing a psychologist again and I finally feel ready to talk about it and continue doing these blog posts. It just felt wrong to give advice and encouragements to other people to be open-minded and stay strong when I was struggling so much myself. I’m very excited to get back to blogging though: to get back to sharing my story and to get back to the incredibly positive and supportive blogging community. I hope that everyone reading realises that I’m not a hero or a perfect figurehead for the young, disabled community. I mess up and fail sometimes too, which I hope makes my story even more honest. I have a lot of exciting blog ideas planned which I hope that you guys will like. Thank you so much for sticking by me and waiting this long. It means the world.

I’m happy to finally be able to say: see you next week!

08:30, 14.08.2020

Introduction to: Disabled Representation Tips & Reviews

Originally, I had planned for this to be a My Nugget of Wisdom for the Week post recommending black, disabled bloggers and YouTubers to do my part in supporting the current movement. However, I was shocked to find how little of them there were out there, or at least how hard they were to find. Unfortunately, I struggled to find enough to share and in the end, had to give up on the idea. I still would like to say how proud I am of the community for stepping up and helping to support more black artists and fight for their equality.


It’s 2020, the year for representation and pride. Society is now full of black representations, strong female representations, LGBTQIA+ representations and… disabled representations? It sometimes feels like after the Paralympics people forget that we even exist – specifically in the TV and media world. It’s true that the odd wheelchair side character or extra in the background often appears for ‘ample diversity scenery’, but hardly ever main characters. So I decided to start a new series on my blog called Disabled Representation Tips & Reviews:

Penny Pocket from the children’s TV show Balamory

Ever since I became a teenager I’ve been doing everything within my power to change this. When I was fourteen, I used to email numerous kid’s channels like Nickelodeon and Disney Channel every month to try and pitch them the idea of having a sitcom with the main character in a wheelchair. It would be interesting and would probably do a lot of good in erasing ignorance about disabilities among children. If there is any place where disabled representation is extremely necessary: it’s in children’s media.

Fast forward a few years and I’m now designing my own disabled superheroes and trying to write a diverse Young-Adult novel with realistic disabled representations. My friend once said that they found it disappointing that black directors ‘limit themselves’ by often directing predominantly ‘black films’ about black culture using mainly black actors. I responded: ‘Yeah, but who else will?’ I hope to write professionally one day (whether it be for films or novels) and of course, when I do I’m going to include strong disabled representation in my writing. Because the sad truth is: not enough people are including them. I don’t care if it ‘limits’ me or makes my work less mainstream – It needs to be out there if we want a change in how society views disabilities.

 So, I plan on doing much more about representation on my blog:

  • I’m going to start reviewing popular disabled representation in books and films. I’d love to hear any suggestions or recommendations for what you would like me to review. It can be anything: representation in books, anime, TV shows, films, etc.
  • I plan on writing some short posts with some quick representation tips
  • I also want to open up my blog as a platform for #OwnVoices writing. If any writer is thinking of writing a book with a disabled character in it (which I highly recommend) I would love to review the representation or give advice on what life would be like for that character, so that you can be sure that the representation is accurate.

Remember that around one billion people in the world are disabled, so if someone writes a book or a film script set in a large town with no disabled characters – it’s actually rather unrealistic. Diversity is all around us: if modern media continues to show a world where everyone looks the same, then all that they are doing is pitching us a Utopian world that clearly doesn’t mirror reality. We may not fit society’s ‘perfect mould’ but that shouldn’t be a reason for us to often be ignored and excluded from mainstream media.  

I really look forward to working more on this Disabled Representation Tips & Reviews series! There are a lot of cool disabled representations that I can’t wait to share with you guys. I’m curious to know: When was the last time that you saw a disabled character in a film or TV series? Did you think that it was a good representation?

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Image Citations: https://balamory.fandom.com/wiki/Penny_Pocket, https://www.anime-planet.com/characters/mimori-togo, https://nl.pinterest.com/pin/71283606579933983/, https://www.nytimes.com/2016/09/21/arts/television/review-speechless.html, https://www.elle.com.au/culture/isaac-sex-education-george-robinson-22908, https://www.hobbydb.com/marketplaces/hobbydb/subjects/toph-character, https://dc-and-marvel-megaverse.fandom.com/wiki/Oracle_(DC_Universe), https://www.amazon.com/Hello-Goodbye-Dog-Maria-Gianferrari/dp/1626721777/ref=as_li_ss_il?ie=UTF8&qid=1521682081&sr=8-1&keywords=hello+goodbye+dog&linkCode=li2&tag=booksforlittles-20&linkId=d4f8bd9c15983603de7af7d3e576bccb, https://www.usajacket.com/product/freddy-freeman-shazam-jacket/

How the Kids at School React to My Disability

School life is tough for someone like me, so one thing that I like to do to help me cope is to sort the teens at school into different categories based on how they react to me and my disability. Don’t get me wrong, I’m not judging any of them: I’m a rather shy person who can be scared by social situations. I’m pretty sure that everyone at school would see me differently if I was a more out-going and confident person. But when you get as lonely as I do, it can help to sometimes play little games with yourself like the sorting of these categories. So here are the six types of reactions I get to my disability at school:

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1. The Angelic Bad Boys

One of the first things that I learned when I started at Secondary School was that I was never going to be a very good judge of character because people don’t act like their real selves in front of me. It’s always the case that the most mischievous boys, the ones that almost everyone says is trouble or generally not very nice to people, are extremely nice to me – nicer than most in fact. They go out of their way to open doors for me, pull out chairs for me, treat me nicely, and in general clap me on. They also tend to act interested in my technology: asking to ride on the back of my electric wheelchair or saying that my wheelchair’s trumpet is cool.

I often don’t notice their reputation as ‘rude boys’ until my friends tell me that that’s not how they actually are with other people. I’ve never understood why this happens so often: maybe they wouldn’t dare to be their usual teasing selves around me, or maybe they just don’t feel the need to put on their tough, bad boy façade around someone like me – who knows? I’m never that close with them and only truly meet them in passing, but I still find it intriguing that most of the so-called ‘bad boys’ feel the need to be nice to me. I’ve only ever come across one ‘bad boy’ who wasn’t afraid to insult me and act a little mean to me like he did with everyone else. It sounds silly, but I liked and respected him for that.

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2. The Avoiders

The Avoiders are the kids at school who spend most of their time avoiding me. It’s clear that they don’t know how to approach someone like me and are therefore made slightly uncomfortable by my presence. They often avoid eye contact and in general tend to stay clear of me.

The saddest Avoiders are ones who I used to be best friends with before my disease progressed and I lost the ability to walk. We used to be so close, but because I now have to use an electric wheelchair, they see me differently and no longer seem comfortable being around me. It can be almost painful passing them in the halls and seeing people who I used to be friends with now preferring to pretend that I don’t exist. But it’s okay – most of the children at school are Avoiders so I’m used to it. The best thing about Avoiders is that sometimes all it takes for them to stop being one is if we share a conversation and they see that I’m not that scary in real life. Then, they tend to relax around me and stop feeling the need to avoid me when they see me.

Avoiders can make me feel sad so I like having fun with it: you’ve got to make the best out of a bad situation, right? I LOVE testing how far the denial of my presence goes:

  • Couples sometimes go to the empty hallway where I eat my lunch and discuss personal issues and relationship drama. This always amuses me because I’m literally right there, noisily chewing on a sandwich while they pour their hearts out. They must see me and my giant electric wheelchair, but for some reason, it’s as if my metaphorical invisibleness causes them to not be aware of my presence. They still turn away and stop talking when other teens pass them, but they seem fine with simply ignoring me while I eat in front of them. So I like to just sit there listening to their soap opera drama and enjoying my lunch – maybe they think the shy kid in the wheelchair is no threat, maybe they’re so used to ignoring me that they really don’t see me.
  • I secretly love pranking my classmates because no one ever suspects that it’s me; and you’d be surprised just how far the denial goes. I was once sitting at a table in class with a boy who was avoiding me – it was just me and him at the table. When he got up to go to the toilet, I ripped a piece of paper out of my book, wrote something rude on it (nothing mean) and put it on his desk. He laughed when he saw it, obviously amused, and then looked around the entire classroom with a confused look on his face. He ended up asking every single person in that room if they were the one who put it there – everyone but me, even though I was the only one on his table and was sitting right next to him.
  • I like sending people anonymous letters and notes and just sitting back and laughing as they point the finger at literally everyone but me. The denial of my existence goes so far that I was once able to prank my entire year group and never got caught! I’ve discovered that doing these pranks is better than spending all day crying in the bathroom about not being seen. If I’m already invisible – I might as well have some fun with it.   

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3. The Abusers

At first, I found it difficult to identify which of my friends were Abusers and was therefore friends with a lot of people who weren’t really friends with me. Abusers are fake friends who stay with me to reap the benefits of having a disabled friend. I’m allowed to be late to my classes because there are only a few lifts at the school so I have to travel much further than the other students to reach my classes, and my classmates are allowed to be late too if they’re travelling with me. Abusers often intercept me right before I enter a classroom and tell the teacher that they were late because they were travelling with me the entire way so that they won’t get in trouble. Abusers are especially nice when they get to ride in lifts with me or when I am unable to participate in an activity that they don’t want to do so that they can sit with me and miss out on it too – but they may not be so friendly in other circumstances.

I honestly don’t mind Abusers that much and struggle to say no to them. At least they’re better than Avoiders: I’d take temporary friendliness over no friendliness any day. Besides, they’re not causing any harm and some Abusers don’t realise that they’re only being nice to use me: they can spend an entire week with me, fascinated by my electric wheelchair and in love with all of the different lifts they get to take with me. Then they get bored and quickly realise that we actually have nothing in common and drop me. I don’t come across Abusers that often anymore, it was more an issue that I faced as a preteen. Teens my age aren’t really (intentionally) that shallow anymore.

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4. The Refusers

I’ve had my share of issues with Refusers back in the day. Refusers are teens who refuse to help me if I ask. Thankfully, I’ve only come across four during my time at school, but the damage that they inflicted still impacts me today: I used to need help to press the buttons on the lift to get upstairs at school otherwise I’d be trapped downstairs. I asked a girl to help me with the buttons and she refused, even though it wouldn’t have taken more than a few seconds for her to do so and she wasn’t doing anything at the time. I ended up being late to my class and had to explain what had happened to my teacher. My teacher asked the girl why she hadn’t helped me and the girl responded: “Because my parents didn’t pay for me to go to this school so that I could spend my time helping the disabled student.” And the sad part was that she was quoting her parents.

That girl’s parents were like the parents of the bully in the film Wonder – they obviously disliked the fact that I was going to the same school as their child. They asked the teachers in primary school for their daughter not to be asked to help me if I needed it and took every opportunity to show that I was clearly not welcome there. It wasn’t just them though: one of my best friends became a Refuser. We spent all of our time together, so I would often ask him for help. I guess that he grew tired of helping me though because all of a sudden he started saying no when I asked him and refused to help me – and I understood why.

I already found it challenging to ask for help, but after spending time with these Refusers, it’s become much more difficult. My close friends can’t understand why I don’t just ask them for something if I need help, but it’s because I don’t want to bore them and become a burden like I clearly did to my past friends who became Refusers – I’d rather just struggle on my own.

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5. The Nannies

Nannies are the opposites of Refusers – they love to help me out, but see me more as someone to look after rather than someone that they are equal to. I have no problem with Nannies because they’re often extremely nice to me and will go out of their way to help me and take care of me. They also give great advice and are always there if I need a loving shoulder to cry on. The thing is, we rarely talk about anything outside of them helping me or complimenting me. Nannies are also older students who treat me like a pet or a cute mascot, which sounds bad, but their honestly just really nice people, and they tend to do the same with the other younger students that they think are cute too.

I do appreciate Nannies, I just wish that they could see that they don’t always have to treat me nicely and take care of me. And that they can just talk to me as they would do with any other friend.

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6. The Equals

The Equals are usually my closest and best friends because they are the only ones who truly see me as equals. They see past my wheelchair to the person on the inside and are so used to me that they don’t even see my disability anymore. They encourage me to ask for help if they see me silently struggling and trying not to be a burden, tell me not to be afraid to be myself, and sometimes ask me to join them at their table if they see me eating alone.

I treasure the few Equals that I get to be friends with, so I can often mess up relationships with them by trying too hard or by stressing when I’m with them. Spending time with them can sometimes be scary or stressful because they mean so much to me, and I’ve had numerous negative past experiences with Refusers and Abusers that make me hesitant to truly open up and be myself around them. It sounds weird, but having conversations with people who treat me equally can sometimes be so intimidating that I choose to spend time alone instead because I’m so familiar with loneliness that it has become my comfort zone – It’s a bad habit that I’m trying to break. Even though I may not show it as much as I should, I’m always happy to have Equals around me and are thankful for the friendship they provide.

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That’s it for the list of categories! I dream of a day where everyone at school can be an Equal and see me for who I truly am despite my disability. But I know that unless major changes are made, both on my part, and in the society at school – it likely never will. That’s why I’m preparing to give a presentation to the younger children at our school about disabilities. I have given numerous presentations to my classmates before in hopes that it might make a difference in how they see me (to no avail), but this time will be different because I’ll be talking to a younger audience. Hopefully, I’ll be able to help prevent them from becoming future Avoiders. Have you ever encountered any of these types of kids at school?

I might do this same style of blog post in the future about different types of reactions from my teachers. And for those that are wondering what happened to the ‘My Journey’ posts, I decided to post them once every month instead of once every two weeks. See you next Sunday!

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Image Citations: http://clipart-library.com/clipart/man-clipart-15.htm, https://www.pinterest.at/pin/569705421592764848/, https://www.pngkit.com/bigpic/u2w7a9t4y3t4o0t4/, https://nl.pinterest.com/pin/500251471095651981/, https://nl.pinterest.com/pin/73113193936289809/, https://clipartstation.com/african-american-clipart-woman-3/, https://nl.pinterest.com/pin/164311086384080209/, https://www.123rf.com/photo_101064352_stock-vector-a-woman-plumber-or-mechanic-contractor-holding-a-spanner-hand-tool-and-peeking-around-from-behind-a-.html, https://www.123rf.com/clipart-vector/refusing.html?sti=lr14sjskf8uhr90nw3|, https://www.dreamstime.com/illustration/nanny-kid.html, https://nl.pinterest.com/Parkersrob/

Accepting New Changes in My Life

This is a picture of me going up the stairs by pulling myself up with my arms

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:

Me, out on a walk with my mother

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

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