One Mother's Diary - Mandy, oh Mandy…

Enjoy reading the 8^th instalment popular series of anonymous diaries of a mother of a deaf child:

                                                                        Mandy, oh Mandy…
                                                                        27th February 2013

‘Mandy, oh Mandy – you came and you gave without taking’. Well, that's what Barry Manilow would have us believe  but the truth is darker and altogether far more sinister.

As a child I was obsessed with Mandy: I loved her, I adored her, I wanted to be her. Now, conversely, I hate both her and all that she stood for with a passion. I’m not making sense yet, I know this, but stay with me and all will become clear…

It’s the day following Calum’s ‘switch-on’ and we are back, in the afternoon, at the hospital for the second part of the programming of his implants. I’m still in a daze; I can’t quite get my head around the idea that suddenly my deaf son is making sounds that he has never, ever been able to make before. It’s rather strange that this is affecting me more than the knowledge that he must also be hearing sounds that he has never been able to hear before. Last night I went to bed thinking, ‘he can make the ‘K’ and ‘L’ sounds! He can say his own name – Calum!’

As we drive to Cambridge I know that Calum is looking at me. I turn briefly towards him; he is smiling. What an amazing journey this ‘switch on’ is and for the first time, the partial paralysis of his face (which is diminishing now) seems a very minor worry. Everything seems different now. I have to be honest with myself; I did not expect the operation and the implants to make this much difference. And we are only on day two…

At the hospital after further programming, the volume of the implants is raised. Calum will be able to raise the volume himself over the following week with the hand control. The mood is very upbeat and Calum is trying to say a few words and demonstrating how he can now make ‘sh’ and ‘ss’ sounds – again these are sounds he has never been able to hear before nor differentiate between. Calum tries saying,

‘My name is Calum.’

The speech therapist turns to me, ‘Calum now has to learn how to do something which we all take for granted.’

I look at her wondering what this could be. Going through my head is the possible answer: that he must learn to wait his turn before interrupting. Instead she says,

‘He must learn how to speak and breathe at the same time.’

I hadn’t even considered this. So much of what I, as a hearing person, take for granted; a subtle shift of emphasis in speech, inflection, pause and pace – everything that makes speech easily understandable is achieved by an almost unconscious control of our breathing. I’m remembering my private drama lessons in the 1970s which always began with breathing exercises and the mantra of my drama teacher; ‘good vocal projection can only be achieved with full control of the diaphragm!’ Despite hours of vocal training, I have to say that I never achieved the mythical inter-costal, diaphragmatic breathing required by all stage actors. I was always the unremarkable girl squeaking from the back of the stage. The speech therapist has suddenly depressed me more than she can ever know. What chance does Calum have of ever learning, at this late stage, how to breathe and speak at the same time? The speech therapist is trying to explain to Calum the importance of controlling one’s breath. She turns to me: ‘It’s what you often hear in deaf speech; not being able to finish words with their natural cadence because you have run out of breath.’

Mandy, oh Mandy…

Goosebumps rise on the back of my neck, I shiver involuntarily.

The year is 1991. This is the year I left teaching to work in Disability Rights as an Equality Officer. Two years earlier I had become disabled following a road traffic accident. It’s a Saturday afternoon, it’s a lovely summer’s day, and it’s the occasion of a family get-together: my parents are here and my mother’s sisters have come up from London. Realising that I’ve forgotten one very important component for my mother’s favourite drink of gin and tonic I have just nipped out to get some lemons from the local shop. Returning through the front door I am greeted by what I can only describe as a one woman show: my mother with her back to me, the rest of the family seated in a semi-circle, on the sofa, on the arms of the sofa or on kitchen chairs gripped by her performance. My mother is staggering around making guttural sounds. My shopping bag slips from my hand. She hasn’t seen me. A cold wave seems to fan out from my heart and freeze my face. I feel sick; she appears to be doing an impression of the part Orson Welles played in film The Hunchback of Notre Dame. One of my aunts nudges the sister beside her and they gesture to my mother to turn around. Her face is flushed a delicate pink with the exertion of her performance.

‘What are you doing?’

One of my aunts answers: ‘Oh your mum is doing an impression of a deaf girl who used to live down the road when we lived in Islington. She was so funny!’

I turn back to my mother.

‘Why are you doing this?’

I feel so frustrated, I’ve spent hours trying to explain to my mother that I don’t feel sad that I am disabled, I just feel lucky that I’m still alive. I’ve tried to make her understand that unlike her generation younger disabled people don’t feel ashamed of wheelchairs, hearing aids or any other aids that make living easier: instead we welcome them, we rely on them and we adorn and personalise them with all sorts of banners, stickers and ribbons. We don’t want sympathy or charity – we want rights. But ridicule… I hadn’t even considered that.

‘Are you going to make fun of me next?’

There is a very awkward silence. Despite my anger and feeling of revulsion I am also strangely aware that I am ruining my own party.

‘Jill, she was deaf. She wasn’t disabled. Everyone made fun of her: she couldn’t speak properly. Her mum didn’t allow her out but she used to call to us in her funny voice from her bedroom window.’

I can’t remember whether it was my mother who said that or whether it was one of her sisters but I do remember that the conversation then turned to the film ‘Mandy’ which was made in 1952. I remember someone saying that she must have had learning difficulties, too, because deaf people can learn to speak – just look at Mandy! Yes, someone else agreed, she ended up having a lovely little voice whereas all the other lazy ones just sounded awful!

Of course, it’s common knowledge now that the actress, Mandy Miller, who played the eponymous heroine ‘Mandy’ was, in fact, not deaf herself. So – were there no deaf actors in this film, probably the most famous one ever made about a deaf character? Oh yes, there were: all the other deaf child characters in the film were played by deaf children…

I didn’t know that, of course, when I acted out the part of Mandy with my teddy bears, my Sindy dolls and a balloon in our back garden as a small child, I just wanted to be her. She was so wonderful, so clever and everyone loved her. Everyone talked about her – the film had such a huge impact even decades after it was first released. If you were deaf there was no need to use gesture or sign language, if you really put your mind to it you could speak like little Mandy, with a lovely little hearing voice. Everyone knew that!

The afternoon of the post-lemon shopping incident took place in 1991. I had my first son in 1995. Calum came along in 1998. In the very early part of 1999, on the eve of Calum’s ABR (auditory brainstem response test) a little voice at the back of my mind whispered, ‘Calum is deaf. And he’s not just a bit deaf; he’s very, very deaf.’ I was alone in the kitchen, late at night. I ran up the stairs to my husband who was already in bed. I woke him up.

‘I think, no - I know that Calum is deaf.’

‘Look, let’s just wait until we’ve had the tests. Let’s just wait to hear what they say.’

‘No, you don’t understand - I know. And I know that he’s very deaf. And I hope that he is because I don’t want him to be half deaf and to be forced to learn how to speak. I don’t want him always to be struggling. I don’t want people to make fun of his voice…’

Oh, Mandy, you didn’t come and give without taking you came and gave and credence to a very damaging prejudice against the entire Deaf community.

Oh, Mandy…

I don’t remember how that summer’s afternoon get-together ended or whether any of the lemons ever ended up in anyone’s gin and tonic but I’ve never been able to banish from my mind the vision of a deaf girl leaning out of a window in North London gazing longingly at the children playing in the street below.

So – Calum has now got to learn how to breathe and speak at the same time. The thought of this herculean challenge takes my own breath away. I’m feeling so disheartened but I know it’s because of the rush of memory, the lemon afternoon, the lonely girl at the window and Mandy. It’s very late now – it’s nearly six o’clock. If we try to leave the hospital now we will hit the worst of the evening rush hour traffic. I persuade Calum to eat in the hospital cafeteria – as long as they have one piece of fried fish left, curling up on the hot plate, he will be satisfied. My heart lifts when I see that they also have a portion of spinach and chick-pea Massala left: spicy food always cheers me up.

‘Orange jookee please,’ says Calum.

‘What?’

He lifts a bottle of orange juice from the chilled drinks shelf.
‘Ah – juice! The ‘C’ in juice is soft like an ‘S’.’ I explain.

Calum laughs.

‘Orange juice please!’

‘Does my voice sound good?’ Calum asks me in sign language.

‘You sound fantastic!’ I reply speaking and signing.

And he does – Calum sounds like a deaf person speaking – he sounds great! I love his voice. I suddenly realise that I like the sound of deaf voices. How many years has it taken me to feel this way?

We sit down and tuck into our respective meals: Calum into his crunchy, dried-out fish (‘it’s a bit hard’ he signs) and me into my rather large portion of Massala. Calum is smiling so much it appears to be slowing his eating down.

In my mind’s eye I see the character of Mandy with her face pressed to a balloon in the most famous sequence from the film, the one where she says her first word: ‘baby’. And then I am there – I am in the film! And what am I holding in my hand? Could that be a rather large darning needle?

Ha! Got you, Mandy!

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