by Rev Andrew Hill
In the ten years since my retirement from St. Mark’s and from the active ministry; and since Margaret and I left Edinburgh and removed to York; we have been blessed with four grand-children. We are visiting with two of them and their parents in Burntisland this weekend. They live with wonderful views across the Firth of Forth here to Edinburgh and inland along the coast to the Bridges. Our other two grandchildren live as far away from us in York in the opposite direction in Sussex in a place called Hassocks just a few miles inland from Brighton. As non-car drivers, you will appreciate that Margaret and I are frequent travellers on the East Coast main railway line.
A few of you have met our eldest grandchild and will know that she was born profoundly deaf, her condition being early-identified by a, now routine, new-born hearing test. So at sixteen months - at St. Thomas's Hospital in London (that's the one across Westminster Bridge from Big Ben and the UK Parliament) – she, courtesy of the National Health Service, was fitted with bi-lateral cochlear implants and has never looked-back. The implanted processors in her skull convert external sounds into electrical impulses which bypass her failed cochlear nerves to reach and stimulate her brain - by an alternate route - where they are interpreted as sounds.
Simulations of what someone with implants may actually ‘hear’ by this alternate route simply leave the hearing person astonished that anything useful can be ‘made out’ at all; and yet our grand-daughter’s spoken speech is clearer and more developed than most children of her age. It is also quite obvious that, just as young children acquire speech and language by natural absorption, our grand-daughter has similarly acquired lip-reading skills. A major difficulty is background noise and yet audiology tests have shown that the amount she can actually cope with is considerable. At school - she is in main stream education - she is also equipped with a special radio aid which by-passes the classroom hub-hub so long as the teacher remembers to switch on her microphone. Oh, and there is also a specially-assigned teaching assistant as well.
WHAT ARE YOU DOING HERE?
There's that wonderful story in the Hebrew mythology about the prophet Elijah who - in a highly confused state - sought shelter in a mountain cave. But Elijah’s unsettled state only intensified such that he began to ask himself:
‘why are you even here, Elijah?’
So Elijah left the cave and returned to the bare, bleak wind-swept mountain - only for his confusion to intensify. There was an earthquake followed by a huge fire-storm; and then, when tranquility was restored, there came ‘a sound of sheer silence’ and a gentle voice which asked:
‘what are you doing here Elijah?’ [1 Kings 19:9-13 NRSV]
A STILL SMALL VOICE
I recall this ancient story whenever I reflect about our grand daughter and her deafness and her cochlear implants:
- how, for her, not only does her classroom radio aid shelter her from the noise and hub-hub of an infant school classroom; as, indeed, the shelter of the cave sheltered Elijah from the storm;
- but also, how - through the stormy and confused sound which the cochlear implants provide her brain - there also comes a quiet and gentle voice which asks:
‘what are you doing here?’
And our grand-daughter's response would be - well far from it for me to put words into a five year old’s mouth - so as she told a hospital doctor she had not previously met:
‘These are my proper ears and they don't work and these are my magic ones and they do.’
Within the deaf community - so I have discovered - there is an historic debate which the advent of cochlear implants has revived and especially among families with hereditary deafness. Apparently, there are many in the deaf world who regard themselves - not as individuals with a disability - but as persons belonging to a specific language and cultural minority – like the Gaels and the Welsh.
Through force of circumstance, persons who happen to be deaf have a higher chance of socialising with others who happen to be deaf; and who then happen to meet, marry and have children who may or who may not be deaf. The parents then become uneasy because their hearing children - while fully able to participate in their parents’ deaf world - are also fully able to participate in the hearing world which is not accessible to their deaf parents. Such participation, it is argued, reduces the opportunities for social interaction and community among people who are deaf; and in the United States there is actually a university - Gallaudet University in Washington DC - especially for deaf students. At one time there was even a scheme for a particular American state to be set aside especially for the development of deaf community and of deaf culture.
Now, I have to say that, until our grand daughter was born, this particular issue was new to Margaret and myself; and until we found ourselves in a supportive, listening mode with two parents faced with making a huge decision on behalf of their first child who just happened to have been born ‘profoundly deaf’.
So just what are the issues for hearing parents who have given birth to a profoundly deaf child?
- First - is the child’s life to be defined according to a minority ‘deaf culture’ – sign language, lip reading and special schools into which alternate culture the hearing parents would also need to enter simply in order to communicate with their child?
- Secondly - should the parents accept - on their child’s behalf the risky, costly and generous offer of modern medicine and the National Health Service to implant their young child’s skull with modern, new-fangled bi-lateral cochlear implants costing thousands of pounds; and this on the basis of what is, so-far, still limited evidence that the earlier they are implanted the more successfully the child will acquire speech?
Well, whatever decision our grand-daughter’s parents had made, I’m sure that Margaret and I would have been supportive; but as it happens we did know of a profoundly deaf colleague of mine who in his mid-sixties had been successfully fitted with a single cochlear implant; and I
remembered him telling me about hearing black bird song for the first time in twenty-five years, and that helped, tremendously. My colleague, of course being an adult, had himself, been the ultimate decision maker, while with a very young child, two parents were making a decision about dangerous and interventionist surgery on behalf of another human person.
On reflection there are at least three different ways of being deaf:
- The first is those who – like our grand-daughter - are born congenitally deaf and for whom decisions need making about how they will manage in a majority hearing world; together with the whole business of acquiring alternate ways for human interacting – signing, lip reading, notetakers – and even the amazing wonders, ‘the magic’, of cochlear implants.
- The second way is those persons who are deaf because, as they age, their hearing has become less acute and who appreciate the assistance of ear trumpets, hearing aids, deaf loops in public places, folk who ‘speak up’ and who may even, like Beethoven, fill many of their hearing gaps from their own vivid imaginations.
- The third way of being deaf is that of those persons who are deaf not because they are physically deaf, or because their hearing has become less acute through aging; but because they have simply become less careful and less attentive as listeners, and this sort of deafness is something which can affect us all.
HELP US TO LISTEN
From somewhere in the depths of my mind, these past few years, there has frequently emerged a request which simply asks:
‘Help us to listen for we are very deaf’
and this, surely, is our prayer whether we be physically deaf; or simply dull of hearing because of age; or simply inattentive listeners:
‘Help us to listen for we are very deaf’
- to our busy minds, our beating hearts and our neighbour’s quiet breath;
- to city sounds invading this quiet space – an ambulance rushing by - or a rumbling train below;
- to the sounds of playing children; the hopes, fears, pains and sorrows of friends and neighbours, and of unknown persons just like us;
- to the mental strains of students and scholars; the cries of the tormented and the forgotten;
- to the silent motion of planets, the ordered dancing of stars and galaxies; and the still, small divine whisper of cosmic being.
Help us to hear, to touch, to see, to smell, to taste.
Help us to listen for we are very deaf.
Copyright Andrew Hill used by permission given in St Mark’s on 14 May 2017
Rev Andrew Hill is a retired Unitarian minister and was our minister from 1974-2007. He is a member of St Mark’s.