AVSTTR’s Gill Croft has been speaking to Sandra Norburn about her acquired deafness:
First of all I hope you’re ok. Isolating is hard for everyone but can be even harder if you’re deaf.
The theme this year is ‘Acquired Deafness’ which simply means you lost your hearing at some point during your life, rather than being born deaf.
This is a lot more common than people might think. It happens to older people, but it may happen to people all through their lives and often there isn’t any explanation for it.
It happened to me in my 30s. I was a busy working mum with two teenage children. First of all, I noticed when they would shout to me from another room I wouldn’t be able to understand what they were saying. I could hear their voices, even some of the words, but not enough to make sense of it.
Later, I noticed that if I was at home with the TV on or music playing – the kids would come in and complain it was really loud.
Then at work I started having difficulty on the phone. It seemed as if everyone mumbled! If only they would speak up! And slow down!
Finally I went on a training course and couldn’t follow the tutor. Talking to my colleagues I found that none of them were having any difficulty. However, I still didn’t think it was anything to do with me – The air con was too loud, and the trainer had a strong accent.
Writing all this down it seems incredible that I didn’t realise I was losing my hearing. But in day-to-day life you don’t notice the changes at the time if it’s gradual like mine was. Looking back at my school days now, I think I was starting to lose hearing even then.
Eventually I thought I should go to the doctors and get my ears syringed. But when I went he told me they were quite clear and would refer me for a hearing test. I went for the test, really not having any understanding of what might happen next. I thought it strange that there were long gaps of time in between the tones played in my ear, but nothing prepared me for the shock of the audiologist saying that I had a significant hearing loss and to try hearing aids.
I was 39 years old. Since then my hearing loss has progressively worsened, to the point where I’m now severely to profoundly deaf with ‘good’ hearing in only the lowest frequencies. Which is fine if you just want to listen to vacuum cleaners or aircraft taking off!
With hearing aids and supportive colleagues I continued to work full time until I was 56 when I had to have a rethink and find work that was not so stressful in relation to hearing. I’ve had my hearing aids for over 20 years now and in that time the technology has developed as it has in all walks of life. Today I have powerful NHS hearing aids which cleverly transpose some of the higher -pitched sounds into a lower range where I hear a bit more. Plays havoc with music though!
With all my higher frequency hearing gone though, hearing aids can only help so much with hearing speech. Even with the Roger Pen equipment I use with my aids, at work I probably hear about 60-75% of the speech. Listening also takes a huge effort of concentration and is difficult to sustain at even that level through a full working day. As anyone who’s deaf knows, in everyday private life the rest is filled in by my brain, using context, and if all else fails a laugh or a nod in what I hope are the right places.
Clearly, at work this isn’t acceptable, I’m working an average of two days a week, as a Tribunal Member, and also as a Panel Member for Professional Regulators, and volunteer as Chair of Trustees for deafPLUS. I need to hear and understand every word.
The only way I’ve found this is possible, is to have Speech-to-Text Reporters (STTRs). These are paid for by my employers as a ‘reasonable adjustment’ but Access to Work can also fund them. There are numerous apps now which claim to do the same job, but they work by using automatic voice recognition, and cannot match the accuracy of a highly skilled STTR. I know they work fine for lots of people, but with a loss as significant as mine they are not yet accurate enough for the work environment.
Recently with Coronavirus making work happen via video conference, this has become even more important. Whilst video has some benefits – all the faces are close up for lip reading for example, weak Wi-Fi, background noise in other people’s homes, poor lighting, etc can make some meetings more difficult than in-person ones. Some of the platforms, Microsoft Teams, Skype, for example, have captions you can ‘turn on’ – but these again are produced by voice recognition software so while they might be ok in some roles, for me in a regulatory environment I need absolute accuracy.
That’s why I have ask for a remote STTR for all my meetings. It puts me on a level playing field with my colleagues and enables me to take a full part in discussions, without having to constantly check what’s been said and ask people to repeat themselves.
STTR is a highly skilled job, and the text is only a second or so behind the speech itself. No auto-captions can match that. For people who have lost their hearing after learning to speak, it’s the equivalent of an employer providing a BSL interpreter to enable a Deaf person to fully participate. I hope that the focus on Acquired Deafness for Deaf Awareness Week will mean many more people accessing the services of an STTR, remotely at the moment.
In general whether at work, in social situations, or at home, by far the most important thing for me to be able to understand speech is the clarity and pace of the speech itself, and the external surroundings.
I use captions on the TV, without them I can’t even follow the news, where the speaker is facing the camera, let alone anything else. They are of variable quality but getting better all the time.
I go to captioned theatre and films and rely on the screens on trains and planes. I had no idea what was happening on a ferry crossing recently!
For communicating with family and friends I use WhatsApp or text, Facebook Messenger and Facetime. The other day was my husband’s 60th birthday so we had a family skype get together.
Just like a real one in a pub or restaurant, I missed quite a lot of the fast paced unregulated conversation. That can’t be helped and it was worth it to see their faces – but where detail and accuracy is important a Speech-to-Text Reporter is essential. My life is pretty much captioned!
Last year I started learning BSL and have nearly finished my Level 1, which is enabling me to start to communicate with my Deaf colleagues at deafPLUS. It will never take over speech as my main communication tool, but as my hearing loss increases I’m sure it will prove useful in a range of situations. For the moment I think it’s similar to trying to use my ‘O’ level French on holiday – people who rely on BSL appreciate me trying, and it helps me to engage with people on their own terms, although in a limited way just yet.
So just on that basis it’s worthwhile and fun! Doncaster Deaf Trust, who I’m doing my course with, is offering a FREE BSL Level 1 Course so why not give it a go?
At deafPLUS our Board and the majority of our staff have hearing loss, of all types and causes. deafPLUS provides advice and support for anyone living with hearing loss, including our ground-breaking and award winning online advice service. Our new information hub provides advice and support in both BSL and text https://www.deafplus.org/deafplus-advice-line/ If you or someone you know needs help and support to access services, manage debt, or ensure you’re getting all the benefits you’re entitled to it’s a good place to start.
Perhaps you or someone you know is starting to think they might be losing their hearing. It is a shock and it is upsetting whatever your age. It can be isolating and frightening.
The first step is to have a test. You can do this online or by phone at first if you like. At the moment you’ll have to wait to see an audiologist until the lockdown is over.
So that gives you a little while to think about it. Talk to people about it and prepare yourself. Why not talk to one of the deafPLUS advisers?
If reading this has made you realise you’re struggling, we’re here to help.