I have a disability. Not really a life limiting one. Not a physically obvious one. Not one that makes people utter stupid, thoughtless phrases such as “oh! Poor you!” Not one that means I need a blue badge to enable me to park closer to the store. None the less, one that still forces me to tick that little *yes* box on a job application “do you consider yourself to have a disability” (keeps employers happy, they can then refer to themselves as an “equal opportunities employer”) and the one that I still have to declare on my car insurance application-DVLA aware, no restrictions.
I find myself apologising.
-I’m terribly sorry-
Or explaining myself: can you please stay to my right, or make sure you are looking directly at me when you speak to me, could you please try not to mumble so much. No, I don’t need to lip read, I just need to be able to process that you are talking, to enable me to hear you. Just because you’re sat on my left, can you let me know you’re talking to me by placing a hand on my arm, or waving at me, or whatever.
-You see, I’m partially deaf-
My disability is completely invisible, I don’t have a hearing aid like a homing beacon pointing out my faulty ear, I don’t walk with a crutch, I don’t have a dog or a stick. Most of the time, people are unaware of my deafness. This also means that when I do feel the need to inform people, for example in a busy hospital ward, where I’m trying to hear what the consultant is saying, or at a Christmas party, where the music is booming, but I’d really like to join in on the conversation going on to my left, I constantly run the risk of being treated differently, just because I sometimes have to ask people to adapt something ever so slightly.
The change in people’s behaviour is immediate. It’s obvious and it’s cruel.
It’s like I suddenly become less of a person. People feel the need to dramatically slow down their speech, to address me in monosyllabic tones, they look at me like my IQ just dropped 50%. They sometimes even defer to my husband. “Can you explain to your wife”
You could say, at this point, that I am asking people to treat me differently, by politely requesting that they adapt things slightly. I’m not. Does someone who is wheelchair bound deserve lesser facilities because they request a ramp up some steps? Does a blind person expect their food in a restaurant to be thrown willy nilly on to a plate, because, why should a blind person need it to look pretty?!
Are we (those of us with disabilities) any less of a person, just because we have a part or two that doesn’t quite work like it does with the majority? Look at cars. We could both buy an identical vehicle, but one could get a puncture. Is the car less of a car? Is it less valuable because of one single puncture? No.
Adapting to deafness, and the way people can sometimes treat me as a result has probably been the most difficult part. I wasn’t born with it. In my very early 20’s, I was diagnosed with a brain tumour. The subsequent surgery to remove the tumour meant that I woke up after 3 days in ICU with the connection between my ear and my brain completely and permanently severed. I knew it would happen. It was discussed at length between the surgeons and myself. I knew it would never be reparable. That modern medicine wasn’t quite clever enough to find a way to artificially assist my hearing.
What I wasn’t prepared for, is how loud and overwhelming it can be to be partially deaf.
Loud? Did I say loud? I did. Now hear me out for a minute (pun intended!) before my op, I had two channels through which I could process noise. Two receptors. Filtering out the background noise from the conversation I was in.
After my op; just one.
One massive rush of noise, noise from all around me like stepping outside in to a storm with howling winds so loud you can’t hear yourself think. One huge confusing jumble of sounds, that my brain just couldn’t separate in to any kind of useful information. I would often find myself screaming at everyone to just shut up! Sitting there with my finger firmly wedged over my “good” ear, or bursting in to tears because someone has interrupted me whilst I was speaking, and I could no longer process my own words, or hear theirs.
Even now, 5 years on. I find myself overwhelmed sometimes. It can be simple things, like a busy queue in a coffee shop, music playing too loudly in a store, my husband trying to talk to me without pressing mute or pause on the tv, the combination of the fan in the kitchen and the toddler whining, or the teenager mumbling about something makes me feel dizzy, the noise of an open window in the car disorientates me. I cannot go out cycling with my husband, because it’s dangerous for me to be in traffic. I cannot judge the speed a car is approaching from behind, because my stupid hearing doesn’t tell me the car is behind me, it tells me the car is all around me.
I can never ever locate where a noise comes from.
Calling my name to get my attention will see me do a full 360 unless I already know where you are stood. The noise of sirens when I’m driving means I am on edge until I can see the blue lights and know that I won’t be *that* person that didn’t clear the way for an emergency vehicle.
I also can never tell if a horn beeping is aimed at me, but I’m a sensible driver, so it probably never is 😉
So there we have it. I’m partially deaf. Look at me with my special label!
But I am not my label. I am me. A human being. It’s Just sometimes you won’t know if I genuinely can’t hear you, or if I’m actually ignoring you 😘
For more about my journey, take a look at the blog post by Mama Baby Bliss