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Nicola McDowell’s Blog 13

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Nicola McDowell sustained a brain injury aged sixteen, and for the following seventeen years was unaware that she had CVI. Through a series of blogs Nicola shares her experiences with us.

The importance of understanding

The difficulty of going from being a normal teenager one day, to the next, having an invisible disability, is exactly that - the disability is hidden from everyone and you still look exactly the same as you always have. In many regards, this is a good thing, because as most people can appreciate, as a teenager you certainly don't want to stand out from the crowd. However, this also means that you get treated the same as you always had - like an independent, capable and head strong young adult. Again, this is exactly how you normally would want to be treated. But in actual fact, because of your disability, you need some special considerations in different situations and this is where the value of the people around you, understanding your disability is extremely important.

Unfortunately for me, apart from the known right-sided hemianopia, the rest of my visual disability was not only invisible to the people around me, it was also invisible to me. Therefore, I couldn't possibly articulate to anyone what the world looked like from my perspective and how challenging it was, fighting to get through each day, as I couldn't even understand the difficulties myself. In order to cope with these unexplainable challenges, I therefore, developed certain behaviours, such as avoiding specific situations and becoming less social (as explained in blog 12). However, these behaviours were often regarded in a negative way by those around me, as no one had been granted the foresight of awareness and understanding of the reason for these behaviours.

This then become a vicious cycle and the awful truth about the whole detrimental situation, is that the more negative responses I received for my coping behaviours, the more I thought there was something wrong with me. But I didn't ever think that there was an actual physical reason for my strange behaviours. I started to think that it was a character flaw that I had suddenly developed as a result of the brain injury and I just wasn't very good at being a normal human being anymore and therefore, wasn't a very nice person to be around. Unfortunately, this loss of self confidence in who I was, was reinforced by the people around me, almost on a daily basis.

For example, in one situation, a teacher yelled at me in front of the whole class, for daring to barge through a doorway before her and not letting her go first. In her view, as an adult, it was her right to go first, which I totally agreed with. But because I simply didn't see her, I didn't stand back for her and we ended up colliding mid doorway. She was obviously in a particularly bad mood that day and sick of selfish teenagers caring only for themselves. I can understand a teacher having this perspective, but in this situation, this clearly wasn't the issue. Not only was her reprimand humiliating in front of my peers, it also had a disastrous impact on my self-esteem and started me on the downward spiral of doubting my ability to walk anywhere independently.

In another situation, an extremely gruff maths teacher kicked me out of class for 'playing' with a monocular. Simply because he didn't realise what it was. Again, I agreed with him. I should have spent time trying to work out how to use this small viewing device outside of class, instead of wasting his and my precious learning time in class. But on the flip side, I was given plenty of time to realise that the monocular didn't actually help me that much, as I sat outside his classroom on the cold hard concrete steps with nothing to do but try and see the world through its limiting lens. Unfortunately, however, it also meant that I wasn't brave enough to try any other tool in class for a while, in fear of being yelled at again.

There were many other snide comments and passive aggressive actions taken from certain teachers, that seemed to come from a place of resentment for me receiving extra attention, when there was no obvious reason why. Some teachers refused to enlarge material for me, or let me sit in the most optimal place in the classroom for viewing the board. But I don't blame them for this, they simply did not understand why I required these kinds of special considerations. But what they didn't realise, is the impact this kind of negative behaviour had on my self-esteem. I too started to believe in their resentment and began to view myself as a difficult, attention seeking teenager.

Fortunately, there were a few kind-hearted souls, who provided enough support to ensure that each day was bearable enough for me to survive my final few years at school. This included the incredibly selfless school principal who did all within his power, to make my time at school functional. A dedicated and determined Resource Teacher Vision (QTVI or TVI), who provided as much expert information as she could in the small amount of time that she had with me each term. And finally, a very perceptive and generous teacher who recognised I needed a safe haven to escape to and offered me her office as a place to weather the storm whenever I needed to. These people all demonstrated a certain level of understanding, despite the fact they didn't actually have a true understanding of my visual world at all.

It was these kinds of small gestures that helped me to realise, that although I was struggling with an invisible disability, I wasn't actually invisible to the world around me. Sometimes, this is all it took to be able to survive.

Nicola McDowell sustained a brain injury aged sixteen, and for the following seventeen years was unaware that she had CVI. Through a series of blogs Nicola shares her experiences with us.

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At CVI Scotland we are devoted to helping people understand cerebral visual impairments, and together working towards developing the understanding of this complex condition.