When you join the ranks of the millions of people with hearing loss – a totally unglamorous condition affecting at least one in seven, possibly one in six, of the population – you soon realise how, when you were hearing, you unwittingly colluded in a form of discrimination. Not only might you have been inclined to laugh at the hearing-impaired – deafness is a bit of a joke in a way that blindness never is – you probably also took it for granted that the world in general need make no concessions to them. Thus, most theatres and cinemas – the National Theatre is an honourable exception – have no acoustic aids, let alone subtitling; and airports and railway stations persist with public address systems that are incomprehensible even to the acute-eared, let alone the hard of hearing.
Worst of all, however, is the attitude of the National Health Service. Simply going to a GP’s surgery can be a trial when staff pay little attention to your condition and talk more to the piece of paper they are writing on or reading than to you. A hearing specialist has told of how he arranged to talk to the staff at one surgery about how they should deal with patients suffering from hearing loss. On the appointed day, reception and nursing staff turned out, but no doctors.
A survey of nearly 900 deaf and hard-of-hearing people by the Royal National Institute for Deaf People found that more than two out of every five had difficulties communicating with NHS staff. One in three said they had left the specialist with no clear understanding of their condition. Those admitted to hospital said nurses and even doctors shouted at them when slow and measured speaking would have been adequate. Others told how they had been given several sets of pills, but no clear (that is, audible) instructions as to how and when they should be taken.
“You have to accept that deafness is quite low down the national agenda, and is in fact battling against relegation,” a Department of Health spokesman told a conference organised by the UK Council on Deafness recently. He went on, with a curious sense of timing, to talk of suicide among hearing-impaired people.
A few months ago, I rang the audiology department of the main hospital in my London suburb. My hearing aid had been going on and off at will and distorting what I was trying to hear. “I am sorry,” said an electronic voice, “but there’s no one here right now, and you cannot leave a message.” I was sorry, too, and angry, but could only give a sigh of resignation. The sigh becomes a habit. Eventually, I got an appointment and joined 20 or 30 thoroughly miserable patients in the usual queue. After nearly an hour’s wait, I had five minutes with an assistant I had never seen before – you rarely see the same one twice – and was sent on my way, slightly diminished by a rap over the knuckles because my hearing aid wasn’t cleaner.
With the onset of presbyacusis (progressive loss of hearing in old age), you enter a world that you might have thought had disappeared in the 1940s, before the NHS got under way. I used to work in eastern Europe, and the conversations I have with fellow sufferers today remind me of private conversations under the former communist regimes, where it was routine to hear grumbles about uncaring bureaucrats and inadequate treatment. I had not expected to hear the same grumbles in an affluent London suburb in the 21st century.
A retired teacher told me her GP had said to her, tetchily, that of course her hearing was failing: “What can you expect when you’re getting older?” An academic psychologist, also retired, told me that the hoops he had gone through had left him very anxious about getting a hearing aid at all. As for the provision of digital, state-of-the-art hearing aids for all – well, we shall see. The official deadline to satisfy all those who need them is now only months away; the provision so far has been erratic and insufficient by any standards.
Then there is the vexed area of television subtitling. Pressure from government “watchdogs” is supposed to be improving this very limited provision, and we are assured that the matter is in hand. But try watching that programme you have been waiting for all day, having pressed 888 on Teletext to get the subtitles. You get a jerky, unreadable text, with words misspelt and in the wrong order. You end up switching off, wondering why you bothered.
Finally, and most importantly, there is the matter of therapy and rehabilitation. Provision in this area is scandalously sparse – possibly partly because working in the field of hearing loss is a less- than-glamorous career option, but also because care and aftercare for the hearing-impaired is only just beginning to be recognised as an area of real need. London University’s new Ear Institute will open in January for what its founders hope will be a brave new world of research and research-into-practice. Not before time. It will soon be 40 years since the newly deafened Jack Ashley MP gave voice to his anger at public attitudes to deaf people. He told a meeting in Edinburgh that there was (then) no proper provision for rehabilitation centres or for training teachers of lip-reading, and declared: “If the blind were deprived of sticks and guide dogs, or the crippled denied crutches, there would be an outcry.” To which one can only add, with another heavy sigh, “Hear, hear!”
Michael Simmons’s book, Hearing Loss: from stigma to strategy, will be published by Peter Owen on 28 November