The latest in our series of captivating entries from our anonymous diarist, we delve into the past to find answers to today’s problems as Calum’s implant date draws closer.
The Girl in the Dunce’s Hat
What does a small girl, made to sit at the back of the class in 1932 with a dunce’s hat on her head, have to do with a fourteen year old boy requesting a cochlear implant assessment in 2012?
It’s our second implant assessment visit to the hospital and the audiologist is talking about the possible causes of Calum’s deafness. We were asked this question on our first visit by the consultant and then, as now, I say that I believe it to be genetic but that we never completed any genetic testing. Thirteen years ago Calum’s father and I had attended an initial meeting with a geneticist but then, shortly afterwards, had separated and, and had not pursued the testing. I feel perfectly happy with the idea that there probably is inherited deafness in our family but less comfortable with the idea of genetic counselling or testing. If I am truthful, I remain wary of the supposed benefit of the research into genetic deafness. I know something about the arguments for research benefitting treatments for deaf people but what if the research were one day used as a pregnancy screening test, for example? And any talk of genetic deafness always reminds me of my mother and of what she endured at school through her childhood. I am aware that she had difficulty hearing the teacher and that she had endless appointments with the school nurse who would syringe her ears, and on some occasions, even her nose. My mother grew to fear these sessions.
‘The teachers used to make me wear the hat and sit right at the back of the classroom but I wasn’t stupid, Jill, I wasn’t a dunce.’ She says the word ‘dunce’ with emphasis, her eyes reddening slightly. I think she’s going to cry but it’s me who gropes in my pocket for a tissue.
‘You’ve never told me this before.’
My mother doesn’t reply. She is remembering.
‘Sit there, Joyce, and you can stay there until you are less of a dunce.’
My mother is now 87 and resides in a care home not far from Calum’s school. Although her short term memory is problematic her long term memory seems to be growing clearer day by day. I visit her several times a week; we often talk about ‘the old days’ but this is the first time she has told me about the dunce hat. I’d been explaining to her that Calum would like to have cochlear implants in the hope that he can hear more.
I’m familiar with my mother’s childhood reminiscences: chilblains in the winter, hop-picking in the summer, a drunken father lashing out, but never this before; never this lonely image of a little girl made to sit at the back of the class.
‘You weren’t stupid.’ I try to comfort her. ‘And with you sitting at the back of the class you were even less likely to hear what the teacher was saying.’
It was only with Calum’s diagnosis that the jigsaw pieces finally came together: my mother’s painful school days, my father describing my mother as a ‘dumb blonde’ and ‘always coming out with some daft non-sequitur’. Another jig-saw piece comes to mind: everyone laughing at me in the barber’s. In order to economise my father had my hair cut along with my brothers’ at the barber’s.
‘Do you like a parting?’ The jolly-faced barber asks.
‘Ooh, yes!’ I reply. ‘And I like the cakes and jelly and pass the parcel!’
Through the fog of cigarette smoke everyone is snorting with laughter.
‘A parting! Not a bloody party!’ Someone shouts
Another jigsaw piece: One day, a lady with a large suitcase visits our school. It isn’t Nitty Nora or the friendly dentist people who tell us we shouldn’t all share the same toothbrush at home and present us all with lollipops before departing. No – this lady had come to test our hearing. A few weeks later at breakfast my father rips open a letter and shouts at the toaster;
‘Our daughter is not bloody deaf!’
There were a lot of ‘bloodys’ in my childhood. I’m dragged off to the doctor.
‘Their bloody robots say she’s bloody deaf!’
The doctor asks me to sit on his knee (this was 1965). From his waistcoat pocket he extracts a large, silver fob watch. He holds it to my ear:
‘Can you hear that?’
The watch makes a very loud tocking noise.
‘Your daughter is not deaf,’ the doctor pronounces in a measured ‘doctorly’ manner.
I console myself with the fact that my father is smiling and that I am not ‘bloody deaf’.
My mother’s hearing loss deteriorated as time went by and she became profoundly deaf in her early 50s. A few months after Calum’s diagnosis of a profound hearing loss I had my own hearing tested. I have a moderate loss bordering on severe in the lower frequencies.
‘So you’ve never had genetic testing?’ I am asked
‘No,’ I reply.
‘Well, if you’d like to pursue it you can ask your GP to refer you.’
‘Oh, that’s certainly something to consider.’ I reply
The interpreter is translating the conversation to Calum. I look across at his absorbed face knowing he has been studying genetics as part of his biology course in school.
In the care home I tell my mother, ‘You know mum – that wouldn’t happen in schools today. You would sit at the front of the class. You wouldn’t be called a dunce; you would be helped and given support.’ She doesn’t look convinced.
‘What will they do in the operation?’ She asks me.
Her face looks so innocent and childlike I can almost see her sitting at the back of that infamous classroom. I hesitate before describing to her what happens in an implant operation but her face relaxes into a smile,
‘It’s a big operation to go through but I can understand why he would want to hear more. Would you like a Pringle?’ She snaps the top off of the tube of potato snacks I have brought with me. ‘And could you bring me some salted peanuts next time?’
My mother is returning to childhood tastes of crisps and sweeties and I worry that my talk of Calum’s assessment is unwittingly evoking painful memories long since hidden away. I feel angry with the teachers and nurses who made school a place my mother both hated and feared. But it is a powerless anger.
‘You do know that Calum is happy in his school, don’t you?’
Calum is being asked a question. The interpreter translates; ‘Why do you want to have cochlear implants?’
Calum signs: ‘So that I can hear higher frequencies and learn how to speak.’
Oh dear: this will not be what they want to hear. We already know that speech outcomes for children who are implanted at a later age are not terribly promising. But the interpreter is saying something different:
‘So that I can hear higher frequencies and learn how to lip-read.’
Calum is immediately congratulated on having such ‘reasonable expectations’. Everyone is smiling. The interpreter signs to Calum that everyone is happy that his expectations are so reasonable. Calum beams. Do I interrupt? No; instead of pointing out the mistranslation I join in with the general smiling. Who am I to rain on Calum’s parade? This isn’t the moment.
Later, in the hospital dining concourse I explain the slip-up to Calum. He understands immediately. He puts down his chicken nugget and lets the information slowly sink in. Gently he touches two fingers to his throat:
‘I’m disappointed.’ He signs simply.
I try to explain that everyone is different and that for every child and teenager implanted there will be a different outcome but, I add, the older you are the more difficult it becomes to acquire speech.
I can only imagine what is going through his mind. He slowly dips a chip into one of the four pots of ketchup he has lined up in front of him. I touch his hand, he looks up and I sign:
‘But, hey! You are so hard working and determined and I know that you will try very hard to learn to listen to the new sounds.’
‘And I will practise every day and you will help me won’t you?’ His face is brightening.
‘Of course I will! An hour every day?’
‘Maybe more!’ He signs. He tucks into his dinner with renewed relish.
As we drive back in the darkness on the A14 I make a mental note that I must let Calum’s key worker and audiologist know about the mistranslation – a minor slip-up which anyone could make but which changes the meaning of his reply quite profoundly.
And then before me again is the monochrome image of the little East End girl made to sit at the back of the class. My mother was not born profoundly deaf like Calum, she has always had speech, but reactions to her hearing loss, and the lack of support blighted her whole school career and, I realise now, have haunted her ever since.
I don’t think I’ll be investigating genetic counselling or testing any time soon.
I think of Calum and of his older brother. I remember a picnic we had many summers ago. I am signing to Calum and then I turn and sign to his older brother.
‘Well, Calum is and it’s not fair if he can’t understand what I’m saying to you.’
His brother is still scowling.
‘And, it’s easier to learn languages when you are young. Who knows – you might have a deaf child of your own when you’re older!’
I say it without thinking.
‘Ooh!’ A big smile crosses his face and he turns to face his little brother.
‘You want?’ He signs, holding out the tube of potato snacks.
Calum nods and helps himself to a Pringle.
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