Tag: discussion

Raising a disabled child 101

Raising a disabled child 101

by elizabethmdouglas ♥ 1 Comment

As a young girl, I was incredibly confident, outspoken, enthusiastic, and so fortunate that my parents never allowed my disability to suffocate that. My childhood had a fair few tumultuous years: I had operations, infections, insufficient footwear causing more infections, new parts of my condition popping up as I grew and so many other problems I can’t even remember. All of this was then exacerbated by my free-spirited attitude leading me to accidentally injure myself and then not understand why I couldn’t walk like the other kids, obviously ending in huge upset.

I don’t think I’ll ever be able to imagine how completely I could’ve been crushed by my Spina Bifida. There are children out there who are unable to live away from it, and in all honesty, for a time I was one of those kids. Aged around 7, I spent the best part of 18 months in and out of hospital and in a wheelchair and yet, my family managed to make me feel just like any other kid. They worked tirelessly to protect my personality from my disability: a feat I will probably never be able to repay them for.

It’s well-known that parents need to be supportive when their children are struggling in order for that child to feel safe, loved and happy. But having a child with a disability that you know nothing about requires a whole other level of support. To make life all the more challenging, my eldest brother has Marfan Syndrome and has his fair share of medical problems. So not only were my parents navigating raising 4 children whilst working full-time as English Literature teachers, they were working out how the hell to cater to 2 separate disabilities, whilst ALSO encouraging those children to feel equal to their non-disabled siblings and the rest of the world.

They managed it though.

I spoke a lot in my last entry about how complicated it is to live with a disability, but an important aspect of my experience is that I spent the first years of my life living as disabled with my family. I was so overwhelmingly supported that there was never any aspect of it where I was alone.

When I describe my childhood and adolescence as perfect, that isn’t to say that there weren’t points where I really struggled. For instance, I was in a wheelchair at 3 separate points in Secondary School – prime time for teenage insecurity and social paranoia. What made my early years perfect though, was the fact that everyone around me constantly made me feel normal. In the moments when I was physically or emotionally isolated from my peers at school, my parents and brothers kept me laughing and focused on a positive outlook on life.

This did then mean that at the beginning of this year, before my travels and before moving to University, I was confronted by the loneliness of moving out. I knew that I’d make friends at University, or wherever it was I went, but I now knew that my support system was about to be miles away. My family and friends who all knew my condition as well as a non-disabled person can, weren’t going to be 2 seconds away. This would mean that I would have to re-explain myself to people, bringing attention to my limitations in a way I’d never done on my own before. There would be no-one who knew me: I had this moment of realisation on the floor of my room, crying to my Dad, with an infected foot, weeks before my plane to Nepal.

It was only when I started to travel that I realised that I can do this on my own – even though it’s definitely not been easy so far. And it’s only thanks to the immense amount of love and support I had whilst living at home that I now (sort of) know how to. Thanks to my family, I’m confident in social situations and don’t shrink into myself when my disability is mentioned. Owing to my parents’ strength, I’ve learnt how to get respectfully passive aggressive with institutions or individuals when they seek to deprive me of things I need, because to some I don’t appear ‘disabled enough’ (side-note: what does that even mean?..). But most importantly, it’s thanks to all of my family’s unwavering support that I know that as lonely as disability can be, there will never ever ever be a time when I’m alone – no matter where we all are in the world.

And that, ladies and gentlemen, is how you should raise a disabled child.

I’m that disabled girl with the shoes

I’m that disabled girl with the shoes

by elizabethmdouglas ♥ 4 Comments

Out of all of my blogs, this one is the one that I’m most unsure about because I worry about the assumptions you’ll make when you can’t see the person talking to you. I don’t want you to have a picture of me that isn’t what I’m really like just because I’ve now told you that I’m disabled. Hence why this post wasn’t one of my first…

When meeting new people, whether that be in Primary or Secondary School, at a party, in an airport, at work or even just meeting my brothers’ girlfriends, my disability has sparked interest. It doesn’t affect my speech, my brain or much of my appearance, so it’s almost hidden. This has meant that most people don’t always realise I am disabled until they spot my legs and after speaking to me for a while they delicately venture to say: ‘is it okay if I ask about why you have to wear those shoes?’. And generally, I prefer people to ask since it shows that they’re interested but also it means that they won’t continue to stare. Which, I’d like to mention is always obvious, no matter how subtle you think you’re being. Also, I use ‘generally’ here because sometimes people have opted for: ‘what’s wrong with you?’ as their phrasing. My reaction to this question is always going to be a bit radgy, seen as there’s nothing wrong with me but what’s wrong with you for phrasing it like that buddy? However, *exhale*, most people mean well so occasionally you have to swallow your pride and go with what you know they meant.

First and foremost, disability is an umbrella term. Even if 2 people have the same disability on a piece of paper, biology is such that 2 bodies will never be exactly the same. So it follows that those 2 individuals will have different variations of the same thing, and extremely different experiences of living with it. My Spina Bifida is a lump on my lower back which holds a ball of knotted nerves inside of it. These nerves are those which would allow me to have complete feeling and movement in both of my lower legs. During my childhood I had 6 operations which sought to drain the fluid in my lump and to correct the position of both of my feet because to put it simply: I can’t walk properly. I also have bad circulation in both of my lower legs and feet, meaning that if I’m cut or have a blister, not only can I not feel the pain (and therefore regulate putting pressure onto it), but it takes a lot longer to heal and is then vulnerable to infection. These cuts or blisters can be caused by anything ranging from a fold in my sock to me walking too far or standing for too long. If I develop a blister and/or an infection, I can’t walk at all and have to use a wheelchair until it heals.

I HATE my wheelchair more than anything in the world. Even now, the idea of me having to use it would reduce me to tears. The reason being that generally I don’t have to use one and am naturally very self-sufficient, independent and stubborn. My wheelchair strips me of my independence and when I’m in it, I never know how long it’ll be until I’m out and myself again. I was never encouraged to feel too sorry for myself during these times, as I always knew that I’d get out of the chair and that there are so many people in the world without that luxury. But that approach doesn’t really make it better in the moment.

To be honest, my perception of disability is complicated. I’ve definitely always struggled to communicate my true feelings about it (like now lol) because when I say things like I don’t want to join my University’s disabled society, it comes across as if I’m rejecting the disabled community. In reality I think that what I reject is the implication that because I’m disabled by definition, that that is all I am as a person. I see it as me being disabled first and everything else second, which is not how I ever want to be described. I’m proud to be disabled, and I think that disability awareness and support groups are vital for society, it’s just that I’d prefer for my disability to be peripheral in discussions rather than the focus. However it’s becoming painfully obvious to me as I grow into the world, that I need to be more explicit about my experiences as a disabled person since there’s just so little varied representation out there.

I don’t love my Spina Bifida but I do love how it’s shaped me, and I categorically do not want to be pitied or patronised, because that never does anyone any good. Everyone has their own issues to deal with and mine just happens to be this. I’ve never wanted to dwell on it but I think I’m learning now that there’s a difference between self-pitying and just describing how it affects my life. In order to be accepted and treated equally, people need to talk about things such as disabilities more often so that when they’re brought up everyone doesn’t apologise for asking. It shouldn’t always be a touchy subject because it doesn’t have to be a negative conversation.

So I’ll do my best to be that person to talk about it, knowing that for me disability is only one of the many defining factors of who I am as a human being.

Culture shock in Fiji

Culture shock in Fiji

by elizabethmdouglas ♥ 0 Leave a Comment

Out of all of my trips, Fiji was an emotional roller coaster: there were a few moments where I almost spent all of my money on a plane trip home. Not due to the scenery being underwhelming, or the people unwelcoming, (definitely nOt the case) but because in many respects the country was so far away from everything I knew and expected.

Quick tip: don’t travel from the North of England all the way to the heart of the Pacific Ocean for 2 weeks. It’s faaaar too long a journey for such a short amount of time. That being said, it’s stunning so give yourself long enough to properly explore. Also make sure that you’ve got a hefty bank account so you can afford the island life: I didn’t have that much money, but I made the best out of it. I even had a wild Manta Ray swim past me in the Pacific Ocean (GAP YAHH)!!!!!

I’m hesitant to be completely honest about my experience in Fiji because I met some really great people there, many of whom I hope to see again. But my first week didn’t give me the same bliss I experienced in the second, on a private island surrounded by the ocean.

I spent the start of my trip helping in a local boys’ school as a teaching assistant, and went into it thinking that it might be similar to my experience in Nepal: it wasn’t. The children themselves were super sweet, but kids are always sweet, they can’t help it. What was more notable, was the underlying physical and emotional violence present within the school. Namely through the teachers in the school using corporal punishment. The class I was with was one of the youngest, and worst behaved, so I watched the teacher strike and verbally intimidate the kids regularly. This created an atmosphere with heightened physical violence where the boys would spend a lot of their break-times hitting each other during playtime. The first thing the teacher I assisted told me was to not get close (emotionally) to the children. I understood that she meant it on a disciplinary level: to create distance and respect between adults and children. But I can’t see how the way she went about it helped the children at all. It was clear to me that many of those who were misbehaving had learning difficulties or experienced physical violence at home, or both.

At this point it became very clear to me that there was very little I could do in that situation. I can’t describe how affecting it is to have a 6 year old child look you in the eye with tears in his eyes as his wrist or ankle is slapped with a wooden ruler, and not be able to do anything. But it comes down to the fact that as the intruder in the room, what right did I have to tell someone that an element of their culture was right or wrong? Some might say that I should have said something, but I didn’t see how that would have achieved anything but made it seem like I was a privileged white girl trying to push my Western views onto another culture. Instead, I tried very hard to stop the boys from doing things to provoke punishment. For those who fell behind in their work, I did my best to catch them up and for those who were about to do something mischievous, I pegged it across the room to try and stop them from doing it. I also allowed them to stand behind me and hug me when their teacher wasn’t looking, seeing as it was obvious that many were starved of positive physical contact.

I’m couldn’t really tell you my opinion of that teacher. On one hand, I watched her hit the kids, and that repulsed me. But then she also seemed like a hard-working, tough woman intent on ensuring that those children received a decent education. Spending time in that classroom, even for such a short time showed me that living in different cultures is not always easy. I have strong views on the subject of corporal punishment in schools as a result of my upbringing in the North of England. That teacher’s views were the polar opposite to my own, but then she had a very different upbringing to me. What is difficult to navigate in that situation, is to what degree I can express my opposition without reeking of western imperialist superiority.

I’m not sure how well I did in such a short time, but I like to think that those kids will remember the hugs I gave them and the parts of the alphabet I taught them.

My city break in the Far East

My city break in the Far East

by elizabethmdouglas ♥ 0 Leave a Comment

For my next trip I didn’t fly solo: I had the pleasure of exploring a part of the Far East with my lovely best friend of 9 years. We chose South Korea as our holiday destination for many reasons. The main being that ever since we were 15/16 we have grown a love and appreciation (and for a time, a slight obsession) for K-Pop. We then quickly fell in love with Korean culture as a whole. Now I know that most people hate to admit any affection for Pop music, let alone foreign Pop music, since it’s generally deemed uncool or lacking authenticity. Thus I realise that half of the people reading this have probably just rolled their eyes at that sentence. But hear me out.

In recent years Western Pop music has begun to pay very close attention to the Korean music industry. K-Pop itself is completely manufactured, but just because it’s manufactured doesn’t mean that it doesn’t showcase talent and originality. Granted, what’s spoken about within the songs is often not particularly raw, personalised emotion, but to dismiss the work put into each song and performance for that reason is unfair. I’m no more than a music lover, so I can’t even fathom the amount of time and effort individuals within the industry put into writing, producing and performing the songs. To add to that, in K-Pop every single released has an accompanying dance routine which has been created, choreographed and performed by someone. That doesn’t even take into account the talent and creativity showcased within the Korean music video industry, where each 3 minute video is treated as if it were a fully fledged feature film. And then there’s all the design of the clothes, and the live shows, and the make-up…

This acute attention to detail is prevalent in all parts of South Korean culture. The buildings are ridiculously well-designed, the food is amazing and the people are all immaculately dressed. My best friend and I felt pretty out of place in our 3 year old jeans… Everything was just so bloody clean, and there weren’t even that many bins knocking about.

It became clear that the Korean people have a level of internal discipline that the West lack. This was not a huge surprise given that the Far East Asian stereotype is that there are many child prodigies able to play Debussy aged 10 and consistently achieve perfect grades at school. Obviously this stereotype is true for a tiny percentage of the population, but for everyone else it’s just that: a stereotype. Regardless of their musical or academic ability however, the South Korean psyche is such that everyone strives for success and to be the best. So the presentation of everything within the society just seemed next level, to me.

Having independently studied South Korea, I’m aware of some of the pros and cons of this ambitious, dedicated and persistent psyche. The people and their creations appear beautiful and perfected but their mental health suffers from the idea that not being faultless is a failure. Students study for obscene lengths of time (often 15 hours a day) in Hagwon institutions and plastic surgery is rampant as the people attempt to reach a ludicrously narrow standard of beauty.

I believe travelling is the best way to realise that no society is infallible, but that all of them should be of interest in one way or another. To me, South Korean people are some of the kindest and warmest around, in a way that the English aren’t. Generally, without even realising it we are cold and reserved here but then in my opinion we have a killer sense of humour and our sarcasm is unmatched. The South Koreans have managed to create a clean, successful and rich society even in the context of losing half of its land, resources and people just 74 years ago. Whereas the British have a history rich with invention and multiculturalism. But South Korea also has such intense societal pressures that often to fail academically is to fail completely. Whilst one of Britain’s societal shortcomings is the recently magnified problem with xenophobia and racism.

I love both countries for their successes, failures and for how they continue to evolve. In my eyes, to say that one culture is backwards or less advanced than another is a pointless statement. What should be focused on is that people can, should, and sometimes do learn from each other.