By Andrew Moodie

Most people would say that I have a fairly good life, but behind the fact that I come from a loving family, get three meals a day and go to a warm bed every night, I’ve always felt like there is another side of the story that has never really been talked about that much. Now I’m twenty- three I think it may be time to address certain things.

For as long as I can remember, I have always been disabled. I’ve got Agenesis of the Corpus Callosum which I’ve had since birth. Also hydrocephalus which has resulted in me having shunts. I’m currently on my third and hopefully final one. I’ve also got Dorsal syndrome and Autism. When I was younger, I used to have seizures a lot, but now I’ve been seizure-free for over a decade thanks to medication. There’s also the matter of my legs, but I’m not too sure what caused them to be the way they are. All I know is that it’s not particularly normal.

Now before I go further I want to make it clear that I do know that there are other people who have also grown up with disabilities who have had a harder time with it and can’t do the most basic things. However, this is solely about my younger years growing up with all these disabilities around me.

Growing up, I definitely stood out from my peers in school typically in the most unflattering ways. Due to my leg issues, I spent week after week in splints, which did hurt and rubbed against my skin most of the time. I was often given weekends off them, but that’s still five out of seven days a week. I wasn’t too confident going up and down stairs which could have been due to my leg issues, or that I’d fallen downstairs at least twice before the age of eight and naturally it left quite an impression.

I think the differences between me and other kids my age were made perfectly clear when I saw how they lived outside of school. When a school day was done, most of them went home and that was it. Others, including me, went to After-School Care. Now all of this seems fine at first, but then you take into account that I was in After-School Care five days a week, during most of the school terms and holidays? It probably got boring for me a lot quicker than it would for others who only have to attend an after-school care when their parents have huge amounts of work on their hands and can mostly run home when school is done for the day.

Now I move on to weekends. I know that at the beginning of life kids will spend every weekend with their parents. But as they get older, they become more independent and often spend the weekend with their friends away from parents or much supervision. Due to my disabilities and the fact that I had a large number of phobias, I never really had that growing up. I always spent my weekends with my parents, relatives, or friends of the family. I’d like to think I’m not being too critical of the way I was raised. When I saw how I lived compared to some of my more able-bodied friends, it always just seemed a little unfair and likely led to me having less than realistic ideas of what kids get up to when they are unsupervised.

Being disabled probably has something to answer for regarding my childhood interests in things like films, TV shows, and video games. They are more or less three perfect forms of escapism. This probably worked a little too well in my case. I think of all the films, shows and games that I invested time in, especially when I was between the ages of fourteen and sixteen it seemed to reach new heights. I don’t think I could even give a number of the shows I binge-watched during that time. Maybe subconsciously I was just looking for escapism from my less than pleasant teenage years where I was once again in an after-school care and I was more or less the only person there who was my age. Looking back there are probably some films, shows and video game that I could have lived without.

I think my interest in these more visual media also halted any interest I might have had in books. Most of the books I had encountered were school-related, so that didn’t help. I did own some books when I was younger but again my main areas of leisure had more or less been occupied already. I did read To Kill A Mockingbird when I was fourteen but it was mostly at an after-school care that I didn’t like at all and who discouraged the idea of bringing things in from home. It wasn’t until I was sixteen when I needed to slowly give up video games that I finally realized what I was missing out on.

My disabilities have led to me going through things that many people wouldn’t even dream about. I’ve had multiple operations, casts on my legs, multiple EEGs, ICP monitors removed from my head – once without any anesthetic. Not forgetting I’ve had needles put through my head, once again multiple times. I’ve also had work done on my hamstrings, which is something I don’t think many people have needed to have done. I almost forgot that I used to get Botox injections in my legs from time to time.

I feel that growing up with all these disabilities and fears can make you feel weak and easily scared, which is true for me growing up since when I was growing up I was always panicking when I saw something I was afraid of. I was also fearful of getting hurt or injured and dreading what would have to done about it. I know that seems like a common fear for someone growing up, but I think what I have written above gives a good reason for me to be more afraid than others. It was fear of injury that led to me never riding a bike. I think I had a tricycle once but I never or rarely used it. Growing up I found things difficult that many other kids found easy like fastening buttons and tying shoelaces.

I want to touch on something that may come as a shock. I was born in 1999 and held back a year before I started primary school, so that makes me five years old when I started school. I may have been the oldest, but I certainly didn’t look or feel it. In fact, I was probably the smallest person in my class. The same felt especially true when I got to high school. I’m not sure how, but I think my disabilities had a part to play in that.

Also when I was twelve and my parents were looking at high schools for me, their first choice for me was Lenzie Academy. It was close to home and many people from my primary school were going there. I was quick to decide though that I wouldn’t be able to make it there after explaining how crazy the stairs could be when going from one class to the other. It was clear that if I went to the academy with legs like mine with several things wrong with them, that I would be a dead man just getting up and down stairs every day. So instead I went to Merkland School. I do know that it was my own choice to choose either the academy or Merkland, but with disabilities like mine it seemed more like a done deal than a choice.

Looking back all these years later, it’s difficult to not feel cheated. These disabilities that I have no control over heavily obstructed what in my opinion could have been a promising youth. When I was younger, I did fantasize about what it would have been like to have grown up able and if I’m honest I still do every now and again. I think it would surprise you just how much the imagination can entertain when you are in the kind of situation that I was in. I know there are disabled people who are happy with how they were born and I’m perfectly fine with that.

For me, growing up disabled was far from fun. It brought me a lot of pain and misery especially with my first shunt malfunction that ensured that I would live in fear of my disabilities. For years I just tried not to think about them too much, but now seeing the impact they had on me growing up, they seem impossible to ignore. Sometimes I do wonder if I really had to grow up and go through life with a certain condition. Why did it have to be a life with Agenesis of the Corpus Callosum, a shunt and legs that have been through multiple surgeries? Why couldn’t I have had something that was easier to manage and wouldn’t result in at least three major operations by the age of nine? I guess what I take away from this is one simple question, why is it always me?

Andrew Moodie was born on 19 November 1999. Growing up on films, they provided a sense of escapism for him. Charlie and the Chocolate Factory was the first film he saw on the big screen at the age of five and he has been a keen admirer of films ever since. He expanded his film taste and knowledge through the years before deciding to become a film critic at seventeen and write articles relating to the film industry. He started reviewing films through a blog called The Truth About Movies, now upgraded into a professional website called Andrew Moodie Film Review.

When not reviewing and writing articles he enjoys listening to old music and film scores, exercising regularly and is rather an obsessive reader.