Losing my h aring meant losing self-love until c vid made me question everything

BY KATE NELSON

For me, it was indeed a loss; I wasn’t born deaf. When I was five, I got meningitis. No one was expecting me to survive. When I did, along with the infection, half my hearing was gone. The thing that nearly killed me, bacterial meningitis, is known to cause sensorineural deafness, which happens when there is a fault in the inner ear or the auditory nerve that carries sound signals to the brain. Sensorineural deafness is permanent. The other main type of deafness is conductive deafness, which occurs when sound can’t pass efficiently through the outer and middle ear into the inner ear, usually because there is some sort of blockage. This doesn’t tend to be permanent but can be in some cases.

Even as a child, I tried to hide the struggles that my deafness caused, as I became aware that it was perceived as more of a burden to others. For years, I did not really comprehend what losing my hearing meant to me, as it felt like it was more of an issue for those around me. I think it carries almost a type of shame, the inability to understand someone. To avoid that shame for both myself and others, I neglected to voice my needs.

Quickly, you learn that the reactions of others will rarely be kind – or even considerate. When I first left the hospital, a substitute teacher screamed at me, ‘Are you deaf?’

I naively replied, ‘Yes.’ I did not know that it was meant to be rhetorical. I did not know that it was meant to be some kind of twisted insult. I did not know why the teacher, after she heard my response, told me to leave her classroom for being cheeky. That was the day I began to hide my hearing loss, refusing hearing aids and rejecting the idea of learning BSL. In my brain, my deafness was the thing that made me different, the flaw that people would pick at and poke at to get a reaction from me. And I know that this is true, as friends I had known for years avoided me due to fear of catching some disease and becoming deaf themselves. Deep down, I understand the teacher’s comment came from a place of frustration, and my friends were kids themselves. They simply did not understand what I needed from them or how hurtful their actions were.

To summarise, by the time I was five years old, I had: almost died, lost most of my hearing, and no one had ever explained to me that ‘Are you deaf?’ was not always an actual question that required a response. It took me over a decade to learn how to best conceal my deafness, what I perceived to be a monstrous flaw – only because it was something society would shun. Then Covid came along. Wearing a mask made lip reading almost impossible, and this ultimately forced me to embrace my deafness. Finally, I was able to refuse phone calls that I could barely hear and the embarrassment of asking people to repeat sentences slipped away. Despite how terrible the pandemic was, I can at least say there was a silver lining.

I am not going to sugar-coat it. Some sectors still really need to improve education surrounding what it means to be hard of hearing. As I write this article, the British Sign Language Act is going through its third reading in the United Kingdom’s parliament, and apps are being developed to allow users of BSL to communicate more effectively with emergency services. After so many years of struggling, this is a massive step in the right direction. However, the clear lack of awareness and representation of the hard-of-hearing community in the media, workplace and beyond must be addressed.

Even over a decade after losing my hearing, I have had people request that I put myself in uncomfortable situations claiming, ‘It will only be for a second.’ Sometimes I wish I could scream back, ‘Yes, it’s fine. I will just fix my hearing for a second for your convenience.’ I know it’s difficult; however, my lack of hearing does not exist to be an inconvenience to you.

I spent years making sure that my deafness did not affect anyone else. Every day is a battle of learning to unlearn what I was taught by society when it came to my disability, of learning to set boundaries on what I physically can and cannot do. People will grumble; they will make you feel tiny, like every issue in their day is because you cannot hear. I used to think of and worry about the second it takes for other people to clarify what they have said, hoping it wasn’t too much of a burden. Now, I remind myself that all it takes for them if they feel inconvenienced is a second to consider the issues the deaf and hard of hearing community face.

The need to hide is always lingering. Hopefully with new legislation, we will see a world where the hard-of-hearing community and BSL will be embraced and understood by everyone. But it must be remembered: a fight must happen, a little bit every day, for us to get to that world. Part of that fight is showing your struggles, voicing your needs and not letting anyone make you feel less than for it. After all, losing your hearing should never mean losing self-love. ✦