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 firstname.lastname@example.org 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.
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.
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:
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
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.
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:
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?
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:
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.
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.
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.
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.
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.
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.
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!
Ever since I was a child, I’ve been able to go up and down the stairs in our house by myself. Whether it was by climbing up the staircase like it was a mountain (which I used to do when I was younger and was still able to walk), or by going up backwards on my bum by pulling myself up with my arms (which I started doing when I became a teenager and lost most of the mobility in my legs) – It didn’t matter what time it was in my life, I always managed to figure out a way to conquer the steep, twisting staircase that led to my room on the first floor. However, around three weeks ago, a stairlift was installed in our home. At first, I was miserable: It felt like I was losing a fight by giving up on yet another thing that I used to be able to do for myself; like I was letting go of more of my independence; and more importantly – like I was taking away more of my freedom of movement which means so much to me. Even though it took me a while to accept it, eventually I realised that it’s okay to take time to adjust to new changes, and that accepting more help doesn’t always mean that you’re failing or losing a fight:
If you know me, you know that if I can move – I do move. Not being able to walk can make you feel like all you do is sit down all day and stay still. Especially when you’re at my age – as a teenager, I just want to work off all of my energy by cycling and moving around like all of my other friends do. So, I can become ‘frustrated’ (I sort of panic and start to shake all over) if I don’t move enough in a day because it makes me feel trapped – trapped inside my low-mobility body. Feeling trapped inside your own body can be awful, so when I go on walks with my mother I take whatever opportunity I can to push my wheelchair myself or to move around downstairs on my own. Therefore, when the stairlift was installed, I wasn’t thrilled at the idea of losing one of the main pieces of exercise that I do at home – going up and down the stairs.
We decided to get the stairlift because I was starting to experience wrist pain from constantly relying on them throughout the day: I use them to pull myself up on chairs and beds, to shuffle across the floor, and to pull myself up the stairs. The stress on my wrists from doing the latter was getting to be a little too much, not to mention the fact that I also had painful pressure sores on my bottom, and constantly banging them on the stairs as I went down them was only making my sores worse. My mother and I had talked about getting a stairlift for a while but I thought that it was going to be one of those things that we talked about but never really did. Imagine my surprise when, at the start of April, she said that she’d already paid for it and that it was going to be set up in just a few weeks’ time.
The stairlift turned out to be… not what I expected. Since our staircase has a turn in it, the stairlift isn’t actually built up against the wall. Instead, it follows a track like a rollercoaster so that it can spin around the two turns in our staircase. It was truly quite terrifying to ride it for the first time because it makes a lot of noise and shakes at certain points. I couldn’t stop thinking about how easy it would be to slip out of it and fall down the stairs. Also, I’d just spent the previous week researching rollercoaster accidents and rides that travelled on tracks without anti-roll mechanisms, resulting in catastrophic collisions. It seemed rather ill-timed that merely a week later I had my own mini ‘rollercoaster’ installed in my home, it was almost as if the universe was taunting me.
It took weeks of using it before I stopped feeling scared and we had figured out all of the issues regarding how I was supposed to get in and out of the stairlift which was rather high off the ground. Along the way, I realised something: I was a teenager, it was my birthday in a few days, and I had just had a stairlift installed in my house. What would happen when I turn twenty-five, would I have a hospital bed installed? Receiving the stairlift felt like taking a step backwards, like a loss in the constant battle I’m waging against my disease by surrendering yet another of my abilities; It felt like a failure. Also, you only ever see senior citizens using stairlifts in the media and I didn’t like the negative connotation of helplessness and decay that came with it.
But after three weeks I had to admit to myself that it was easier to go up and down the stairs using the lift – I no longer had to fear the long, hard trek upstairs after watching a late-night film on the TV in the living room. Yes, I wasn’t able to go up and down the stairs by myself anymore but, in a way, I was given a different sort of independence. Now, I could go up and down as I pleased without tiring myself out. I know that I can be stubborn when it comes to my disability: I can’t do much, so I become extremely overprotective of what I can do by insisting that I do it without any help. But I need to learn that receiving extra help here and there doesn’t make you incompetent. It’s actually a gift, because it shows that you know yourself and what you can and can’t do.
It has been an emotional few weeks and I admit that I have shed a few tears over this. As a teenager, receiving a stairlift can be a rather big pill to swallow. Ever since I lost the ability to walk by over-relying on my wheelchair, I’ve felt scared of relying too much on devices that I don’t really need to help me out. Luckily, my family always knows what’s best for me and has been with me every step of the way as I accepted this new change in my life. The stairlift may have thrown me off my axis a little, but I’m beginning to find my balance again and learn to live with it. After all, it’s only a tool. I wish that there was more disabled representation in media so that I could have seen more young people using stairlifts when I was growing up. Maybe that would have helped to make it look less big and scary when it came to how it made me feel when I used it.
I’m beginning to find out that receiving new devices to help me out with my disability is like swallowing a disgusting pill: I may detest it at first, but eventually it might start to help me and I may even grow to depend upon it. I just have to trust those around me who know what’s best for me and trust in myself to know my own needs, limits and capabilities. In general, new changes can be hard to adapt to. What new changes have you recently encountered in your life? How did you overcome them? That’s all from me, see you next Sunday!
(This is the second part of the post I released yesterday) On the other hand, my social life at this age was going well – I was just starting to find myself and discover my talents:
My mother was a teacher, so every day I had to stay extra hours at the school after it was over while she was in meetings. So, she signed me up for after school computer lessons, mostly just as something for me to do while I waited. It was there that I learned a lot of the graphic design skills that I used to design the subject headers, and other digital art, for this blog. Designing simply came naturally to me, and all of a sudden I was rushing ahead of the class and mastering extremely complicated animation on my first try. Without that class, I never would have discovered my talent for animation, graphic design and digital art which I now use almost daily and hope to possibly turn into my career one day.
I also started messing around with cameras, filming and stop-motion animation. I’d spend hours fiddling around with paper puppets or using my Playmobil toys as actors. My poor family had to suffer through each and every one of my poor-quality ‘film projects’. At school, I was always among the best readers in my class and would speed-read my way through the library’s shelves. I’ll never forget the late night ‘missions’ I would embark on: to do a ‘mission’ I would fill my bed with as many teddy bears and blankets as possible because I discovered that it was harder to get to sleep when I was warm. I would then use that warm, stuffed bed to help me to stay awake until my sister (who used to share a room with me) went to sleep. After she was fast asleep, I’d creep over to the bookshelf and take as many books as I could carry over to my bed. By the glow of our night-light, I’d one-by-one make my way through the pile until morning, often having to go back to the shelf to get more.
I liked writing too (which I also hope to do professionally one day) and would take the many stories that I wrote into school for my classmates to read. Once, the teacher read one of my books out to the class: as she and the students showered me with compliments, I became determined to never stop writing and sharing my passion with others.
Regarding friendships, I had an extremely close friend who I would spend all of my time with. Now that I think about it, we were such an odd pair: he was into sports and was well known for being one of the fastest boys at school. He played football, participated in running competitions and took part in numerous other athletic sports. Sports weren’t really my thing, and I can’t think of many common interests that we shared, yet still, we were inseparable (we did share a common love for the Cartoon Network show Ben 10 though. I think that was what first made us friends). We’d spend all our time laughing and joking around together and he was endlessly patient when it came to my disability, so much so that the adults around us called him my ‘knight in shining armour’.
I’ll never forget when his little brother was having a birthday party at a huge indoor play park. My friend’s parents gave him the option to take one friend of his own with him – and he chose me. I just remember feeling so happy that he hadn’t chosen any of his other football friends, he had chosen me. It made me feel so special, and the day that we spent at that play park was one of the best in my entire childhood. Even now I can remember almost every detail.
He provided me with the push that I needed to be slightly more daring: the play park had three huge slides which I was too scared to go down but he dragged me to the top of the highest one, and when I started to get cold feet, he quite literally pushed me down it. I fell in love with that feeling of falling, and even though it took me quite a while to make it up the winding staircase to the top and past a ton of impatient pushing and shoving children, we rode down that slide again and again. He also dragged me into the ‘horror tunnel’ section of the park which I had always been too scared to go into before. With him, we smashed a mirror at my house while having a plastic food fight and broke a vase at his place with a soft football; life was always more interesting when he was around. While he brought my more daring side across, I would provide him with the caution and sense that he needed: I would often take charge in a classroom environment, challenging him to reading competitions or helping him out with assignments.
These are pictures of a spy adventure book that I created which starred me and my best friend as the main characters (I censored all of his pictures and the mentions of his name for anonymity’s sake). I wrote this when I was nine-years-old:
So many years of our childhood were spent stuck to each other like glue. We didn’t care that he was a boy and I was a girl; that he was white and I was black; that physically he could achieve things that I never could – we just made sense together. Inseparable doesn’t begin to describe how close we were.
Group 5 (age 7-8) was a big year for me. So big that I decided to split this section of the series into two parts; one which I’m releasing today about the progression of my disease and the other about my social life at the time which I’ll share tomorrow. Group 5 was the year when how different I truly was to everyone else around me began to sink in, a lot of changes started to happen at school and with my disease and, in general, my ‘childhood’ started turning into a ‘disabled childhood’.
In group 5, I started falling down a lot. I could walk, but I tired from it quickly and when I became tired my legs would suddenly give way underneath me and cause me to fall. The more tired I was, the more often I would lose all control over my legs and fall down. It wasn’t that serious – I would often just dust myself off and continue running around, and the clinic gave me lessons on how to fall in the right position with my hands outstretched so that I wouldn’t hurt myself too badly. Falling was normal for me back then, it was just something that I learned to deal with. Unfortunately, the school and the clinic each decided to find a way to help me deal with it as well:
Changes at School
The school chose to help me by providing me with my own personal ‘Lunch Lady’ (which at the international school just meant someone who supervised children during break time (recess). They were often housewives who worked part-time at the school). It was the Lunch Lady’s job to follow me around every break and lunch, so that if I ever fell down or needed help, they would be there to provide assistance. Of course, I HATED all of the Lunch Ladies who were assigned to me. No child wants to be constantly monitored or wants some adult hanging around while they’re trying to have fun with their friends. I got into quite a lot of trouble with the Lunch Ladies because I would do everything within my power to get them to leave me alone or to show them how much I detested them.
There was only one Lunch Lady I got along well with: she was a kind, chatty Australian woman. I liked her because she treated me like I was mature and we had some great conversations together. Yet, she still gave me space when it was clear that I needed it, unlike the other ladies who constantly hovered behind me like a creepy horror film villain. I was stuck with these Lunch Ladies until I graduated from primary school. In the playground they made me stick out like a sore thumb and therefore became my first visual sign that I was more different than I had previously thought.
The other change at school was for gym class, but I loved that change: I was assigned someone to help me dress for gym and then help me out during the lesson. Looking back, gym class was probably the place where my primary school did the best in adapting things so that I could participate. I loved gym class, I loved the gym teacher and I loved every helper that I ever had for gym. They were fantastic: they bought special equipment for me including a tennis racket which I could slide my hand into so that I could whack the ball with my hand and a shot-put which was extra light with a long ribbon attached to it so that I could spin it around in the air before throwing it. Every sports day, personal goals were set for me which I had to work extremely hard to reach and get medals for. I was physically tested, yet everything was done with my abilities in consideration so there was little that I couldn’t participate in.
Unlike my secondary school: who once had a Paralympic-themed sports day but I was the only one in the entire school who couldn’t join in. I just sat on the side-lines for hours in the hot sun, watching as teens ran around with blind-folds to play blind football or tied blocks to their legs to make it seem like they were running with prosthetics. I remember feeling bored, sad and, to be honest, a little offended – especially since I knew how well the primary school took care of me when it came to sports.
Changes at the Clinic
The clinic tackled the issue of me getting tired of walking and falling often by giving me my first wheelchair. She was pink with a picture of cartoon ballerinas on each of her wheels so I named her Rosie. Looking back, I wish that I had never received that wheelchair. I know that the clinic gave it to me with good intentions but I didn’t really need it. The only thing that I maybe needed it for was long-distance walks, but I seem to remember many family holidays with me power-walking in front of my sisters on long treks. I was only a child at the time that I received the wheelchair, so of course I didn’t take it seriously and of course I only saw it as a giant toy on wheels. I used it more than I needed to and would ride around in it for ‘fun’. I didn’t realise that in the future over-relying on my wheelchair would have serious consequences.
Around this age, I started going to Scouts which is where I learned a lot about wheelchairs (including what it feels like to have an electric one roll over your foot (It’s agony)) and it was the place where I met other disabled people for the first time. I remember my parents giving me rules regarding how long I could spend in my wheelchair at Scouts because they thought that it was important for me to still walk since I could. I completely ignored these rules and spent the whole time in my wheelchair, once again not realising what the consequences of my actions would be.
When I think about this particular time in my life, I mostly remember spending ages crying in the bathroom. I would cry every now and then and ask God why, why me, why did I have to be the disabled one? All of these changes at school made me fully realise that I was different and I didn’t know what else to do with this realisation other than cry. I spent quite a few years doing this, just all of a sudden bursting into tears and taking refuge in the bathrooms at school, and it would be a while before I finally cried myself out, started to accept my condition and the way things were, and just get on with my life. But as a child, accepting my disability was a pretty big pill to swallow and my frequent crying sessions were a sad but necessary step in me maturing and starting on a path of self-acceptance and appreciation. So looking back, I don’t regret them.
The Final Step in the Realisation that I’m Disabled
But the biggest moment by far of group 5 was the day that I found out the truth about my disease, a memory which even now has made me unexpectedly shed a few tears while writing about it: It was one of those days that I had been crying in the bathroom. I remember being upset because I had fallen down hard on my hands, because I had no one to play with that day and because on my way to the bathroom to cry about all of it, I had been whipped in the back of my heel with a skipping rope but no one stopped to say sorry or acknowledge me. All of this resulted in my usual ‘Why, God? Why me?’ bathroom weeping, which was pretty standard back then. The difference was that this time the Lunch Lady that was supervising me heard me crying and took me to my teacher to talk about it.
So, I went to my teacher and explained everything that went wrong and why I was crying. In the middle of my teacher’s attempts at pep-talking me into feeling better, she casually mentioned the fact that one day I would have to be in a wheelchair permanently. My jaw dropped to the floor and I burst into a fresh bought of tears. My teacher apologised: “Simone, I am so, so sorry. I didn’t realise that no one had told you that yet.” She dismissed the rest of the class so that they could go to their singing lesson (which in the back of my mind I was secretly happy to be missing – no one liked the singing lessons), put me to sit on a chair, called my mother to come to the class and gave me her favourite childhood teddy bear to squeeze.
The following conversation that ensued was one of the hardest slaps of reality I ever had to receive in my youth. Up until that point, my disease hadn’t really progressed, I just thought that things would be like this forever and never change. But that day, I discovered that my disease may progress so much that I may not be able to move anymore, and even worse, that we had no idea when or how fast everything would change. My condition was no longer simply something that made me the slowest when we played tag, or something that made me fall down a lot – that day it became something much bigger and much scarier.
So, I made a promise to myself; it was ridiculous and silly, but it’s still one that I’ll never forget: I told myself that if I ever did lose the ability to walk that I’d just give up on life, stay at home all the time and grow obese. I know that it was just nonsense thought up by a very scared eight-year-old’s brain, but this promise is still so emotional for me because of the reason that I made it: It was because I pictured myself losing the ability to walk when I was 50, maybe 60, years old after I had already lived a lot of my life. A reality where I couldn’t walk anymore was so far away and unimaginable that I couldn’t even think of a future where I still lived a normal life in that condition. I never EVER in my WILDEST DREAMS imagined that just four years later I would be taking my final step – all because of that damned wheelchair and my own failures. I hate thinking about this day – looking back just reminds me of how utterly terrified I was of becoming who I am now (someone who can no longer walk), and how much I let that little eight-year-old girl down.
Like I said last week, Wednesday was my birthday. To be honest, I didn’t expect much: the day started like any other. My friends did send me some nice midnight happy birthday messages and my sister sang to me when I got up in the morning, but other than that I had breakfast and started working like any other day. I started feeling a little underwhelmed around dinner time. Although I fully appreciated the work-free day which allowed me time to work on my comic (which is going really well by the way), I’m young and still at the age where birthdays are supposed to be fun and full of everybody making a fuss. Call me needy but I only have a few more of these left before birthdays aren’t as special anymore – certainly not as special as they are when you’re a kid.
Just before dinner, my mother sent me upstairs under the pretence that she didn’t want me to see the table spread until it was ready. After a little while, she called me back downstairs. But when I got there, no one was at the door and triumphant superhero music was blasting from my father’s speakers. Out of nowhere, my family jumped out each dressed up in superhero cosplay and striking heroic poses. It was a huge surprise, I didn’t think that they had anything special planned especially something as perfect as a party planned around my favourite thing in the world: superheroes!!! And if you know my family – you know that dressing up definitely isn’t their thing, but they there all were – my father with a cape and mask, my mother as Batman and my third-eldest sister as Supergirl, all standing under a superhero happy birthday sign and handing me a Wonder Woman costume to change into.
After I changed and we all had dinner (my mother’s homemade salmon quiche – one of my most favourite meals) we went into the lounge to watch a video that my father put together on the television. It turned out to be a video compilation of my extended family and friends, all dressed up as superheroes as well, giving me heart-warming birthday messages. It was so touching – all of my friends had handmade their costumes including a friend who had duct-taped a onesie to make an extremely realistic Cyclops costume. The messages were extremely moving too and I felt so grateful that everyone had put so much effort into it that I ended up a little teary-eyed. Despite the distance, it felt like they were right there in the room with me. It was probably the best part of one of my best birthdays.
The rest of the night was spent opening presents and participating in superhero-themed activities. My mother planned and created a whole custom game of superhero charades. (My sister and I were insanely in tune with one another: I pointed at the sky outside through the window and she instantly guessed that I was trying to act out the superhero Moon Knight. During my next turn, I waved my hands around in the air for two seconds before she guessed the superhero Storm). We also acted out pretend superhero fights – it was simultaneously the nerdiest and most awesome thing that I have ever done. Finally, the evening was perfectly topped off with my sister’s homemade carrot cake and the comedy film Happy Death Day.
I know that people often say that wearing a superhero outfit makes you feel strong but I truly did feel stronger dressed as Wonder Woman – it was just so cool. Above all, my birthday party reminded me of how loved I was by the people around me, it made me want to be the hard-working and successful superhero that they had all made me out to be. Since my birthday, I’ve taken up exercising every day again and have attacked my studies with new vigour. I really want to be someone significant in this world – it’s my dream to one day save people with my writing or with my art, just like the superheroes on my wall do. And if I ever end up being able to do so, it will be because my loved ones were with me every step of the way. I know for sure that this was one birthday that I’ll never forget.
This is the first post in a six-part series I plan on releasing about ‘my journey’ from the diagnosis of my disease when I was a baby up until where I am now with my disability. In-between each ‘journey’ post I’ll release one of my usual ones before continuing with the series. This is ‘my journey’, ‘my story’, my life. I hope you enjoy:
‘My journey’ began when I started learning how to walk as a baby. My parents noticed that I had a peculiar way of walking (my legs kicked out violently as I stepped forward and my back was arched with my bum sticking out at the back) but, of course, when babies are just starting to walk they don’t always get it right straight away. My parents took me to see a doctor in England to see whether or not it was something to be worried about but they kept getting referred to other people and ended up giving up. It must not have seemed like that big of an issue at the time.
After a while, my whole family packed up and shipped out of England to start a new life in the Netherlands. When I was around two and a half, my mother hosted a coffee morning and one of the mothers there pointed out the funny way that I walked again. After that, my mother decided to take action once more to investigate why my walking was off. She took me to a Dutch general practitioner (Huisarts/GP) and right away they sent me up to the hospital to get looked at. The practitioner told my mother that she should bring her husband with her when we went to the hospital. That was the moment my mother became scared, scared that my weird way of walking may be much more serious than she had anticipated, scared that the reason that her husband should come too was because they were about to hear some distressing, life-changing news.
At the hospital, my mother, my father and I were all tested. They attached wires to different parts of my legs and sent electric shocks through my body to see how my nerves reacted along with numerous other tests including the drawing of blood. Apparently, the electric shock test was so painful that afterwards I didn’t want to go near anyone wearing a white coat because it made me scared (as any other two-year-old would be). Obviously, the moment that my family was told that I was disabled and would have to use a wheelchair permanently in the future was an emotional one, a moment which my family members will always remember. I’m getting emotional now just thinking about what it must have been like. After three able-bodied daughters, it was the furthest thing from my parents’ minds; but life moves on and you learn to adjust. In my eyes, my parents never lost a beat – I was brought up like all my other sisters and had fun and fought with them like any other squabbling siblings. From my perspective, my childhood wasn’t different from any other:
My first social ‘disability’ memory is me making a girl upset by telling her that I was special and she wasn’t because I was disabled. Obviously, being disabled wasn’t a very big issue for me at the time since I used to use it to insult others! From my early childhood, I have no memory of having trouble with friends because of my disability, of missing out, or anything like that. Among my classmates, I was a natural leader and would often make up the games that my friends and I would play. One of my eldest best friends, who I’ve known for as long as I can remember, said that her first memory of me was seeing me run across the playground with two other girls, our hands stretched out because we were pretending to be aeroplanes. My fingers must have been curled and my walking must have been off, but I was still zooming along with them without a care in the world. My future friend looked at us from across the other side of the playground thinking: “Who’s that girl?”
The only two things that I did notice back then was that I often didn’t make it in time for the toilet (what child did at that age?) and that I had to miss out on lessons to visit the clinic. Because I had so many ‘accidents’ I would often have what I used to call ‘wedgies’ which were an uncomfortable stinging feeling which would last through the day, but I think that other children have them too. (One of my first teachers was Polish. I’ll never forget how she offered to rub some flour on me after a particularly painful ‘wedgie’. My dumb toddler brain thought that she meant a ‘flower’, so I pictured a nice wet stem being rubbed on me since liquid was really what I needed. Imagine my surprise when she started sprinkling white powder all over me which stuck to me and made me even itchier)
I didn’t mind visiting the clinic as long as it wasn’t during Golden Time (indoor playtime). Some of my fondest memories with my father are of him picking me up during school and the two of us driving to the clinic. He’d play classic 80’s music (Listen to the Music by The Doobie Brothers was my favourite) and we’d have so much fun on the way. Then, he’d always keep me entertained or make me laugh if the doctors were doing something I didn’t like. Even now when I get injections, my father’s hand is the first one that I reach for. I remember hours of picking up coins to test my grabbing skills, trying out different tools for eating or typing, riding in different wheelchairs and placing my hand or leg in a clay cast to be baked into a device to stretch out my fingers, a walking splint, a typing device, etc. I spent quite a lot of my childhood in that clinic, seeing numerous different specialists.
The only way that I could walk was with a special ‘splint’ in my shoe so I would often get fitted for those, especially since I frequently broke them due to the awkward angle I walked at.
DISABILITY TIMELINE: At this point, I could still walk although my disease had already progressed a little bit: my fingers were curled and I had difficulty grabbing. My fingers were perfectly straight and worked normally when I was two but I lost that mobility before my earliest memories began. The only proof of my straight fingers is in family videos and pictures, I can’t remember a time that they were normal.
That’s it from me. I hope you’re as excited about this series as I am! It’s been quite nostalgic trying to dig up my earliest memories. What’s your earliest memory? See you next weekend for my birthday post (it’s on the 29th)!
Nothing gets me crazier than superheroes. While others in my family are known for being ‘the literature ones’ I’m known as ‘the superhero one’. I’m never as popular with my family or friends as when we’re watching a superhero film because they know I’ll give them all the comic book facts and explain the comic book jokes. From the pictures taken of my room below I think it’s pretty clear that I am a rather obsessed superhero fan:
I started reading comics when I was around twelve after I had grown up watching superhero shows for children such as Young Justice and Justice League the animated series. Since the moment I read my first comic, I’ve been head over heels in love. I guess it’s because I love stories and each superhero has their own one which intertwines together to make an entire universe made up of fictional events. It was like getting lost in someone else’s vast and intricately-detailed imagination, sort of like reading a book series such as Lord of the Rings but superhero worlds are even bigger with more sides to them. And, of course, I’m a sucker for anything containing superpowers, special abilities or awesome fight sequences.
As a preteen, the disabled superheroes I read about were particularly cool. I loved them so much because they were proof that people like me could still be awesome. My first favourite disabled superhero was Oracle, so she’s always had a special place in my heart. I loved the bat family, so it was so cool to see a disabled superhero there, especially one that was so highly respected.
I also used to design my own disabled superheroes after I realised there were three main points that I wished I could change about most of the ones I saw. So, I picked up a stylus and sharpened my graphic-designed skills to have my own shot at designing disabled superheroes:
The first point was definitely the need to always give disabled superheroes backstories for their disabilities. Most disabled superheroes have a reason that they’re disabled and most of those reasons are tragic accidents: whether it’s being blinded by a radioactive substance or being shot and paralysed by the Joker. There’s nothing wrong with this, almost all superheroes have tragic backstories, but not EVERY disability needs an explanation. An example of this is the Marvel character Puck, a member of the superhero team Alpha Flight who has dwarfism. He has no powers but is an extremely skilled fighter and a great hero who became especially popular among fans with the same disability. But then Marvel had to ruin everything by giving him a ridiculous backstory where he used to be a tall adventurer who was turned into a dwarf by a demon. Seriously?! They had to give an explanation for his dwarfism? On the other hand, you have disabled heroes like Box (a.k.a Roger Bochs, also from Marvel) who has both of his legs amputated below the knee. I’ve always liked him because we never find out why he doesn’t have legs, and the truth is, we don’t need to know for him to be an awesome disabled superhero. When I was younger, I also really liked Echo a.k.a Maya Lopez, a skilled fighter who was simply born deaf.
By not giving some sort of supernatural explanation for disabilities, you also help to make your hero that little bit more relatable. The sad side-effect of this need to explain superheroes’ disabilities is also that you don’t see many superheroes who are just born disabled. It’s almost as if people don’t know that it’s possible to simply be born this way with the amount of writer’s (in other literature as well) who always feel the need to create a backstory or a tragic car accident past to explain their character’s disabilities.
So, I wanted my disabled superhero to simply have been born disabled with no explanation for her disability needed.
The second point was how some of these comics handled their superhero’s disabilities. One of the most common things that I see is writers unintentionally erasing their superheroes’ disabilities. Admittedly, it can be a difficult trap to avoid when it comes to creating characters within the supernatural world of heroes. An example of this is Dr. Mid-Nite from DC who is blinded after an explosion. He soon finds out that he has the ability to see in the dark and therefore constructs infrared/pitch-black goggles which allow him to see during daylight too. The problem is, now this character can basically see again, during night and day, and therefore isn’t truly blind anymore. Despite this, Dr. Mid-Nite is often praised for being a great example of disabled representation in comics which I can’t quite understand. I’ve always been on the fence about Daredevil too, a blind Marvel hero who can probably ‘see’ a lot better than your average blind person (or even most able-bodied people) using his other enhanced senses. I guess Professor X is a popular example of a hero’s power not erasing their disability: his psychic powers don’t change the fact that he’s in a wheelchair (although it does depend on when and which version of the character you read. You know comics, they can be confusing)
So, I wanted my disabled superhero to not have a power that seemed like a ‘fix’ to their disability but rather another separate piece of who they were.
The third point was about the representation of minorities or underrated people in the growing superhero film genre. One of the biggest shames with some of the popular superhero films that have come out recently with female leads is that the creators of such films seem more interested in having a female superhero instead of a superhero who is a female. Instead of making them a character who happens to be female, they tend to base the character largely around their gender alone while they simultaneously constantly try to show their female strength in almost every moment as if the whole film is just supposed to prove something.
My dream is to have a disabled superhero who is female, black and permanently in a wheelchair who would make a good main character in one of the big, mainstream superhero films that are coming out these days; one where the film isn’t based around their disability, one where it doesn’t even need to be mentioned much. I wanted the character to be human and relatable, someone who is fairly young, who is still able to be excited by the world as she makes her own way and someone who makes mistakes as she goes along. She doesn’t have to be a perfect pillar of strength or a Superman-like Mary Sue of morals. If a film were to be based on my character, it should be your average intelligent action film but the only difference is that the lead is disabled.
My final result was Miss. Sentient (name still under review 🙂 ). I based the design for her wheelchair on one of Oracle’s but the character still would work just as well with your average manual or electric wheelchair (I haven’t finished her logo yet either). I also based her largely off myself because she has my same disability meaning that she can’t walk and has limited finger mobility.
Melissa Ashmore has been disabled all of her life and has had a fear of mannequins since childhood. One day, while at a rollercoaster park (basically the Efteling), her friend tricked her into going onto a ride which goes through a tunnel full of animatronics. However, while Melissa was in the middle of panicking from being surrounded by automated mannequin puppets, the animatronics started coming to life and chasing the park guests. They ran outside only to find a snake-shaped rollercoaster come to life and slither off the tracks along with all the other dolls and statues in the park. That was when Mel discovered her ability to control any inanimate object with a basic anatomy. For instance: dolls, mannequins, Lego characters, character trinkets made of china or any other model of people or animals. She is basically the living incarnation of The Night at the Museum. She not only uses her powers to make objects come to life to help her defeat crime, she also uses the mannequins she commands as her carers who she can control to do tasks such as carrying her up stairs if need be.
She still needs a lot of work but I’ve had fun making her as well as the universe she belongs to, her villain and a lot of superhero friends to help her out. You should probably expect me to mention superheroes again sometime, they are my daily obsession and a big part of my personality. Also, I’ve wanted to design my own comic book for quite a while so I’ll keep you guys updated with the progress of that project if I decide to go through with it. That’s pretty much it from me! Who’s your favourite superhero or superpower? I’d be open to suggestions for Mel’s superhero name or what you think her logo should look like. See you next week!
Admittedly, it’s difficult to give my advice on staring at disabled people because it’s hard not to mix up my own negative personal experiences regarding staring with general advice which can apply to everyone. A part of me wants to say: ‘Don’t stare, it makes whoever you are staring at feel awful,’ but I know it’s not that simple. Our eyes are one of the tools we use to explore the world around us. Of course, it’s not our only tool, but it’s one of the main ones those who have the ability to see rely on. Therefore, it’s an automatic human reaction to examine that which we’re not familiar with using this essential tool. I’m sure almost everyone can relate to being stared at for one reason or another: whether it’s because you’ve visited a country on holiday where you stood out a little more, because of your unique fashion sense, because of your natural afro hair or because of an embarrassing tumble in public. Whatever the reason, this post is going to give advice on staring and tips for those who are usually stared at.
Before I start with the advice, I would like to point something out: The difference between staring and looking. There is absolutely nothing wrong with looking at people, looking is what we all do every minute of every day unless we have our eyes closed. If I constantly tried to avoid looking at all of the people around me, I don’t know what I would do with my eyes. Staring is something else – staring is focusing your eyes onto someone for a long period of time. The difference between looking and staring is the difference between seeing a person or watching a piece of visual entertainment, the difference between being curious about someone or examining them like they’re a specimen. There’s nothing wrong with looking, but we should all consider our actions when it comes to staring.
Without further ado, here are my six tips to do with staring at those who look different:
#1: We’re All Human
When it comes to staring in general, this is an important thing to remember. There’s a quote I really like from one of my favourite authors, Gregory Maguire, that says: “The world pauses for royalty and deformity alike, and sometimes one can’t tell the difference.” (By the way, I don’t condone the use of the phrase ‘deformity’. This quote is rather old and therefore outdated) Personally, I’ve never believed in the sensationalism of people, especially celebrities. No matter how perfect they may appear in the media or how talented they are, I think it’s important to remember that they’re still human beings like the rest of us. It makes me angry when I see interviewers asking inappropriate questions to celebrities about their personal lives and sexual activity because they’re questions that would seem horrible if asked to random people on the street. But because they’re celebrities, people feel as if they don’t need to treat them with the same level of decency they would award any other human being. They’re not walking monuments, they still breathe and still have hearts that beat. And the same goes for disabled people or anyone else who gets stared at for looking different. No matter what we look like or what we may be known for, we’re all human, and don’t deserve to feel like we’re not by being stared at.
To help emphasise this point, here is an extract from my diary which I wrote around a year ago (I’m a very dramatic kid XD) I may have been writing about adults who tend to look away, but I think it can apply to staring in general: “Most people when they see me look quickly away again. I know that they see an error or something wrong before they see the person. I am a mistake to them, someone who ‘came out wrong’, a glitch in the system, a blemish in their ‘normal, average’ world. So, they look away, some trying not to think too hard about what my horrible life must be like, others just glad they’re not me. I know some people like having me around, I can see in their eyes that I am their daily reminder to be thankful for their lives, a daily reminder of what could have been. After all, there’s always some poor sucker going through something much worse. There’s always some poor sucker like me.
But the truth is that this is my life. I know it’s impossible but really pause for a second and try to imagine that this IS my life. Our disabilities don’t dissolve at the end of an inspirational speech or wash away in the Paralympic pool after winning the gold. Every morning you wake up to this, 24/7, every hour of every day – it’s all you know. Don’t just brush it off as bad or hard, because if you do, you’re not imagining hard enough; an entire existence could never be summed up in a single negative phrase like that. This is my life, and apart from a few sucky setbacks, I still breathe, I still blink, I still live the same as you. Life is just life, and this is just mine – different, yes, but nothing worth the aversion of your gaze, trust me 🙂 ”
There’s nothing wrong with being curious, just remember to not treat someone differently because of the way they look. When I walk down the aisle one day, I hope I do have everyone’s eyes on me, and I know we all dream about those moments in the movies where the beautiful character steps into the party and everyone turns around to admire them. If someone is wearing extravagant or creative clothes then I don’t think they’d mind being stared at or appreciated, but if someone like me is just going about their everyday life then I don’t think that’s what they’re after.
#2: A Smile Makes All the Difference
When I see people staring at me, sometimes they’ll look into my eyes and smile. Smiling makes all the difference because it’s an acknowledgement that there’s a human being behind the body you are looking at. It makes me feel happy and causes me to smile back. Whether it has anything to do with staring or not, a smile is always a great way to cheer up someone’s day and something the world needs more of. It makes me feel especially happy when I see children doing this, it’s a reminder to me that they’re full of love and joy and not intending to hurt me with their curiosity.
And NEVER EVER point. Pointing is what you do at the zoo when you’re trying to show your friends an animal which is hidden in an enclosure, it’s NOT something that should apply to human beings. If I see a wheelchair-user with awesome flames painted across their wheels, I’m going to turn to my friend and say: “Hey, check out those awesome flames! That wheelchair is the coolest thing ever,” not point.
#3: Children and Staring: What to Teach Them and How to React
Of course, staring is slightly different for children who are more curious and haven’t learned as much about the world yet. I’ve consulted briefly with parents to come up with these main tips:
If I was a parent, I would show my children pictures and books about people who are different. Consequently, they’d be more used to them and less likely to have never seen someone like them before if they do come across someone different in public, and therefore less likely to stare. Show your children strong black women with natural afro hair, disabled people, trans people and humans from all around the world. Educate them on things like wheelchairs and why we have lifts. This will also lead to a more open-minded child in general. When you teach your children, don’t teach them to fear or avoid disabled people, don’t teach them that all disabilities are because of accidents or are something ‘sad’, just teach them that everyone is different and give them other examples of this that they’d understand.
Teach them not to point along with their ‘pleases’ and ‘thank-yous’ and the rest of their manners. It may be difficult to explain how staring can be hurtful but it might be worth a shot trying to include ‘not staring’ in that list of manners.
I’ve often heard people say that we need to encourage staring to help educate children on wheelchairs and the different things that we may use to help us out during our daily lives, but I’d like to think that children can learn much more about us by simply asking instead of staring and trying to figure things out for themselves. How much can you truly learn from staring alone? Personally, I much prefer when children ask me questions rather than staring. If there’s one thing I always try to have patience with it’s answering children’s questions, because there honestly is nothing wrong with them asking. I would like to encourage parents not to feel scared if their child is asking something. It makes me sad when I see parents shushing their children, pulling them away from me or apologising when their children are asking me questions.
To all those who usually get stared at by children, I would recommend smiling. That often supplies them with the confidence they need to approach you and possibly ask a question or say ‘hello’. When most children stare persistently, there’s usually an element of uncertainty or fear mixed in which a smile can help to dissipate. You’re going to need a bucket-full of patience when dealing with them. I know how useless the advice of ‘just ignore them’ can be, but do keep in mind that they are just curious and that our best chance of tackling ableism is helping to educate the younger generation on disabilities. Communication is key if we want a future of openness and acceptance.
#4: What to do When You’re Stared at in a Way That Makes You Uncomfortable
My sisters used to tell me if I saw someone staring to simply stare back, but I’ve discovered over the years that this piece of advice isn’t as easy to follow as it sounds. I’ve stared back at people only to discover that they were looking at something else, and sometimes staring back doesn’t always cause people to look away. I recommend addressing someone if they’re staring at you in a way that makes you uncomfortable. A small, “Can I Help You?” or “Excuse Me?” usually does the trick.
#5: Consider The Consequences of Staring
Like I said before, all I truly have to share are my own experiences of the effects of staring: I was always a loud, carefree child, but when I was forced to start properly using a wheelchair at the age of eleven, I started to realise people staring at me for the first time and was forced to swallow the truth that I was more different than I had previously thought. It was a big shock for me at that age, especially since I used to be able to walk and wasn’t used to being stared at so much. I started to curl into myself, becoming more shy and caring about what others thought. Everyone around that age experiences spots and bad hair days, but when I had them it would feel especially awful because I knew that people would be staring, after all, they always were. When the staring got really bad, I used to try and hide my face or conceal the most ‘disabled’ parts of my body by sitting on my curled fingers and hiding them from view.
One of my teachers at the time told me to: “Just deal with it. You’re going to have to get over it.” But that was easy for her to say. Being someone who people usually stare at sounds frivolous, but it’s not. It can make you feel more like an outcast than anything else, and even after all these years, I still haven’t truly gotten used to it. When I’m in front of a crowd, it feels humiliating being stared at during moments of vulnerability like when I’m being lifted or lowered into vehicles. In those moments, I’d give anything to be invisible. Even these days, I sometimes surprise myself with how upset I get when I see people pointing or tripping over themselves to catch a glimpse of me and show me off to their loved ones.
To me, staring isn’t just rude like burping or not saying please or thank you, it is alienating, it makes you feel inhuman like a zoo animal. How can you ever feel like everyone else around you if people are always staring at you as if they’ve never seen anything like you before? And even if you do just ignore the stares, you can’t truly ignore this feeling that accompanies them. I know that most disabled people will roll their eyes at me for having a problem with staring. They’re probably thinking: ‘staring is just something you should get used to, there’s no harm in a bunch of eyes anyway,’ but maybe they’re just stronger than I am. As a naturally shy person, the staring really broke me. Most introverts want nothing more than to curl inwards and be left alone by the world, so being one that is constantly watched and given lots of attention is overwhelming. Still, all I want to do is shrink away, but the world won’t let me be. When I was a pre-teen, the staring also made me scared of children. When I used to see a group of children approaching, I would turn around and hide until they passed because I knew what type of staring usually accompanied them. I’m not as bad as I used to be with staring though so I guess in a way my teacher was right.
#6: Don’t Overthink It
‘Relax and don’t overthink it’ was also my last piece of advice at the end of my Talking to Someone in a Wheelchair Dos and Don’ts post and it applies to all social situations with disabled people. When you overthink not staring you get things like avoiding looking at people to try not to offend anyone, but that can be hurtful too. My main advice is not to overthink it and just treat disabled people the same way you would treat anyone else if you cross them in the street.
That’s it for my six tips on staring. Did you agree? Chances are, we’ve all been stared at one time or another in our lives so I’m sure that most can relate. See you next week!
Around two years ago, during the Summer of 2018, I experienced some trouble regarding weight loss and my self-image:
I mentioned in my previous post that I used to go to Scouts for disabled children when I was younger. Some of the children there were overweight and therefore too heavy to lift, so the staff at Scouts used manual hoist lifts (the one that carries your body in a sort of sling) to carry them from their wheelchairs to their beds at night. When the children were in the lift, I remembered them looking so powerless and weak just swaying in the sling of the lift like a helpless yo-yo at the end of a string. I became terrified of that lift and vowed I would never be too heavy to carry so that I would have to use one.
My fear of the manual hoist lift wasn’t about being overweight: One of the hardest parts about being disabled is having the freedom of movement taken away from you – life can feel like a frustrating prison made out of your own flesh and blood without it. As a disabled person, loss of movement and general helplessness can feel like terrifying ideas. That’s why I started exercising – I’d already lost so much ability over the years that I began clutching to my arm strength and limited leg function for dear life by overworking them every day. After all, I was never really the type of person to care about the perfect image of females according to society’s expectations and actually used to write activist poetry against that perfect, skinny image of women – For me, it was more about naively trying to make things easier for my family when they carried me every day by being lighter, and staying far away from those manual hoist lifts.
My mantra was: “I’m not doing this to lose weight, I’m just doing this to stay healthy,” and I would repeat it to myself whenever it felt like I was taking the exercising a little too far. Staying fit is always a hard thing to do when you’re in a wheelchair all day and spend most of the day sitting. Trying to find ways to make up for not walking or jogging is a common struggle among disabled people. Another reason why it was so easy to get addicted to the freedom of movement exercising awarded me was because it wasn’t something I was used to feeling. When I exercised, I wasn’t powerless or weak, I was stronger than I’d ever felt before. When I was out wheelchair riding, in my mind I was running marathons, and I’d never felt so free.
I would exercise twice a day: once in the morning as soon as I woke up for around forty-five minutes and once after school for half an hour. I would also go out wheelchair riding for around the same amount of time. The exercise after school consisted of me travelling up and down the long distance from my living room to the kitchen either by ‘shuffling’, ‘rowing’ my body along with my hands or crawling (which I didn’t like doing as much because I always ended up with scratches and bruises on my knees and legs but it took much more strength to do. Try crawling from one end of your living room to the other and back again, I think you’ll find that it’s surprisingly difficult to do). I would do this fifty times one way and then fifty times the other. I would also do a total of a hundred reverse push-ups using my sofa (couch) in-between the ‘laps’. For my morning work-out, I would use an office chair and later followed sitting cardio work-outs on YouTube. When I went out wheelchair-riding, I always made sure to ride on pebble or stone pathways so that the trek would be much harder and more challenging. On weekends, I extended the wheelchair trek to double the amount of time by doing ten laps around the park instead of five. The wheelchair-riding and reverse push-ups were definitely the most challenging exercises of the day.
My bruises and breathlessness were my rewards every day. I don’t think I realised how addictive something as menial as exercise could be. Whenever I faltered or grew tired, I pictured myself swaying in one of those hoist lifts and would instantly throw myself back into it again. As for drinks, I only ever drank water. I started to get so enthusiastic that I began eating less too. For lunch, I would have a single tortilla wrap with one slice of ham and stay far away from snacks during the day. But then the Summer holiday came and my mother and I travelled to London to stay with my two older sisters in their flat in Stratford. London was where it got really bad.
I still worked out every day and went out in my wheelchair, but going out was different in London – it’s a little less safe than the Netherlands. I remember having to dodge little silver bottles on the pathway when I went out riding so that they wouldn’t pop my wheels. At the time, being the naïve kid I was, I thought they were a part of some mini toy kitchen set. I later discovered that they’re used to hold drugs. I also remember quickly turning away if I saw a group of people standing together, smoking. The area was much more limited, so I just travelled around in circles a lot – desperate to get forty-five minutes of wheelchair exercise in. I would go further than my sisters told me I could go, exploring areas I had never been to before and then having fun trying to find my way back. I remember once falling out of my wheelchair in an unfamiliar area with no one else around, scared I wouldn’t be able to get back in. I did manage to in the end and simply swore to myself that I wouldn’t tell anyone it happened in case I was banned from travelling by myself and doing my exercises.
I didn’t just go on my wheelchair rounds during the day, when we went out on day trips to museums I would push myself around for the whole trip. I would also do my exercises late at night before I went to sleep so that no one would see. I hate melon and salads, but whenever we went out, I started buying salads instead of the things that I would ordinarily want and forcing them down. I remember ordering a salad for the first time at Nando’s when I went with my great-uncle and mother. It was disgusting, but I ate the whole thing anyway. Back at the flat, I survived on melon slices which my mother would buy in mini tubs from the local store. It felt as if I had melon slices almost every day that holiday.
I’ll never forget the night that my family and I went to go see Mathilda at the theatre. We were taking my grandmother to see the production as a surprise gift and I was extremely excited to go because it would be only my second time seeing a live performance on stage. The night that we went to see it, I only had a few melon slices for dinner. I think that my excuse was that I was still full from lunch which was a lie. Throughout the whole rest of the evening I had a horrible headache and, of course, hunger pangs from my meagre dinner which distracted me from the play. Even though the production was incredible, all I really remember was how horrible I felt and how I couldn’t stop looking at the girls from a school trip who were seated in the row ahead of us. They were wearing revealing clothes that proudly displayed their flat stomachs to the world. I recall staring at their skinny stomachs and feeling so jealous that all they had to do was walk around all day while I had to work twice as hard to stay fit. I felt so uncomfortable and in pain that I couldn’t wait to get out of that theatre. In the end, that night was one of the worst ones of the holiday.
There was a family gathering (I think that it was at my Uncle’s house) the next Sunday. My family is rather big and we all have Jamaican roots, so family gatherings are often celebrated with lots of deliciously-cooked Jamaican food that you can’t get in the Netherlands. Therefore, I decided to take a break from watching what I ate that day to enjoy all of the food my relatives had made. However, after I was done, I felt like I had failed myself – that all the hard work I had done up until that point was for nothing. I ended up crying in the bathroom of my Uncle’s house, upset that I had let myself ‘go’. My mother saw me and threatened to ban me from exercising. After that night, I vowed to work even harder to make up for everything that I had eaten that day, and the encounter with my mother only taught me to get better at hiding it.
But, it all ended during our last day in England. To celebrate our final day there, my family planned to go to Nando’s for dinner. I hadn’t had lunch that day (I think I blamed it on waking up late and having a late breakfast) and had a horrible pain in my stomach. It carried on throughout the entire day, getting worse and worse. When we arrived at Nando’s, I ordered a salad like I had done before, but for some reason, eating made the pain worse. In the end, I couldn’t eat more than a bite of it and the pain in my stomach was getting even worse. By the time we got home, I was rolling around on my bed from the pain. I spent the whole night clutching my stomach, the intense hunger pangs making it difficult to sleep. That’s when I decided I was done – I’d had enough. I’d never been so hungry before that eating hurt or that it kept me up from sleeping. I was scared, and starting to realise that what I was doing was more harmful than simply ‘staying fit’.
After that, I decided to stop being so obsessed about what I ate. The next night, we flew to Rome for a week which really helped. Being surrounded by delicious Italian food made it much easier to stop caring about how much I ate. I did still try to work-out in Rome but the bed I had there made it much harder to do so and my family started complaining that I was making too much noise so I ended up stopping altogether and enjoying my holiday. I did go back to exercising twice a day after the holiday but just to work my legs and make up the fact that I don’t walk during the day – I no longer watched what I ate.
What I experienced only lasted around three months and it wasn’t a particularly traumatic experience, but I know that it could have been much worse. I now have slightly more sympathy for people who do end up going further and developing eating disorders, it can be surprisingly easy to fall into the trap of starving oneself. I now know that no matter the reason, whether it seems as if it’s a good or a bad one, skipping meals and exercising too much is wrong. It can be hard for disabled people to stay healthy if they can’t walk but I would highly recommend searching for seated exercises on YouTube. Some of them are extremely good while still being challenging at the same time. If I’m honest, I’m still scared of those manual hoist lifts and can’t imagine what my life would be like if I lost any more ability in my muscles, but exercising isn’t something I can do as much anymore with my pressure sores and wrist pain which seems to get worse every day. I’m not scared though, I don’t care if I have to crawl along the floor with my face, there are certain things this world is never going to totally take from me and one of them is my freedom of movement. Even being able to slightly wiggle a finger or shake my head from side to side is a victory, and so help me I’ll be shaking it till the day I die.
That’s all from me. See you next week for a Nugget of Wisdom about staring at those who look different. Bye!