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.