In the months following my daughter Amelia’s diagnosis of hearing loss, I picked up a strange habit when introducing her to people we met in our daily travels. Like an involuntary verbal tick, I would call her ‘deaf’ before I said her name or anything else about her.
This new tendency was the result of many obsessive days spent reading about what the diagnosis meant. Suddenly a host of alien words had intruded on our lives and I drove myself mad trying to work them out.
At first I wasn’t sure what term to use to describe the diagnosis itself. There was the medical vocabulary: it was a sensorineural, (most likely) congenital, bilateral, moderate-severe/profound hearing loss. To the lay-person, this roughly equates to ‘nerve deafness’ in both ears from birth.
These definitions were cloaked in the mystery of a clinical world we had arrived in but did not yet understand. They were cold and impersonal but I found I could practice saying them, turn them over in my mind and get used to their presence.
The words I was really scared to speak out loud were the more commonly used descriptions like ‘hearing impaired’, ‘hard of hearing’, ‘deaf’ (people who have a physical condition of hearing loss) and ‘Deaf’ (people who use Auslan; identify as members of the signing Deaf community).
Or disability – that one was like acid on my tongue.
I tried them all on for size, testing the degree of pain they elicited in me. It only took one syllable to break me back then.
My fixation on nomenclature was really just my way to grapple with what was happening to us. Our situation felt more real (and not like some nightmare starring Max Schreck) if I could give it a name. I settled on ‘deaf’ because ‘hearing impaired’ is regarded negatively by members of the Deaf community who prefer the terms ‘Deaf’ and ‘hard of hearing’ (and I am such a stickler for the rules).
‘Hard of hearing’ just brought forth the image of an old man straining to hear through an ancient ear trumpet. We did not yet use Auslan and had no ancestral or existing links to the Deaf community. So in the end it was deaf with a little ‘d’ that felt about right to me.
Amelia had just turned two years old, so no-one asked her what she thought about this. She couldn’t have told us anyway because the terms that so consumed me were simply lost on her. I am a little ashamed to admit that once I decided I was okay to call Amelia deaf to myself, I just couldn’t stop flinging the word at complete strangers, usually without necessity or context.
I was probably a little deranged by grief, but I gave little to no thought or consideration for my girl – the deaf one – and how it shaped her identity. One day we walked into the chemist and the saleswoman leaned over the counter to look at Amelia tucked in her pram.
“Oh, she’s so sweet! Hello little girl, what’s your name?” Like a Venus fly trap, I snapped her question in half with, “She can’t hear you, because she’s deaf…”
I said it callously, as though she should have known it just by looking at Amelia. It made the woman flustered and uncomfortable and on some sick level I was glad.
It was a perverse thing to do but I repeated this routine often with people who were new to us. It was my conversational trump card. I used it to provoke sympathy, to disconcert people, or to neutralise their judgement (she’s not naughty, she’s just deaf). One more time for the cheap seats.
What I think I was trying to do in my desperation was prove that I was not ashamed of Amelia’s deafness. I pushed it into people’s faces so they would have to deal with the fact we could not escape ourselves. I might as well have propped a sign on her pram saying ‘deaf child on board’.
For a time, I simply forgot to encourage people to see Amelia beyond the feature that was actually invisible to them – her deafness. Inadvertently, I boxed her up and labelled her because I was the one who couldn’t see past it.
Thankfully it was just a phase I was going through to deal with the shock and the grief and it didn’t last. I explained my behaviour to Amelia’s Deaf Educator, AH, and she seemed to understand what was happening and why.
She gently told me not to worry about other people and to think of Amelia and her needs first, before the deafness, before anything. That was all that mattered, not words.
The fact is I was (and am) extremely proud of Amelia’s deafness. It’s anomalous that the thing that almost destroyed me was the same thing that made her more special in my eyes. But I realise I did a huge disservice to her to have made ‘deaf’ the opening number, before people had a chance to hear other songs in Amelia’s repertoire.
There are many ways to honour that unique part of who she is, through learning Auslan and establishing relationships with deaf adults and children, without consigning her to an all-encompassing label. In some situations it is absolutely necessary to let people know that Amelia is deaf to maximise her social interactions (background noise is too loud, don’t stand behind her and speak). If someone asks about her hearing aids or her sign language then I am happy to go there, but there’s no reason to keep assailing people with her deafness on a regular basis.
While I have made a decision to use one word among many to describe Amelia’s hearing loss, this may not be her preference later on. In my experience, not all young people with a hearing loss identify as ‘deaf’ or even ‘hearing impaired’; it’s a complex choice based on many factors I’m only just beginning to comprehend.
One day, Amelia might tell me that she has a different way of explaining her deafness (and herself).
I have no idea what that discussion will be like, but I want to be sure to tell her that I now see her deafness as only one important part of who she is: my girl who is blonde, powerfully strong, mischievous and loves to dance even when she can’t hear any music.
When she is old enough, I also want her to watch this brilliant video posted on YouTube by Bethany, a teenage girl with a cochlear implant called ‘MUSINGS ABOUT BEING WHO I AM – Deaf or Not.’ It says so much about the limiting effects of labels we don’t choose for ourselves, the genuine pride that leads parents to insist on them and the need to take ownership of how we present ourselves as individuals to the world.
Bethany says: “So this is me. I am deaf. So guess what? I can still do anything. So why should it change your opinion of me?”
By Melinda Hildebrandt.
Melinda is author of the blog ‘Moderate-severe / profound … quirky’ the mother of her deaf daughter Amelia. Follow her on Twitter @drmel76
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