Today, I’m publishing a topic on Butterflies & Phoenixes that is rather different from any I have written about before. Because it’s something that doesn’t seem to be discussed that often, I thought it would be interesting to provide an insight into it from the perspective of someone who is personally affected.
For many years, a dear friend of mine from the UK has been suffering from a severe hearing impairment. It struck me that in many ways she has a lot in common with those of us who are chronically ill because she is faced with the same societal prejudices and also being made to feel like an outsider.
She inspires me with how much she has done to improve her life, even if she is not yet where she would like to be, and I hope that others can learn from her story, which will also help to raise awareness for those in similar situations. I also pray that one day society will do more to help those with hearing impairments – through better understanding as well as more effective inventions. This is her story …
Sarah: You suffer from a hearing impairment. How long have you had this and what caused it?
L: For as long as I can remember I have had a hearing impairment. In my childhood it was only mild and didn’t cause much problem but I remember suffering a lot with earache as a youngster and even now, whenever I have a cold, it always affects my ears. I suppose that I became more aware of it in my late teens when I was doing a secretarial course which included shorthand and it became obvious that I wasn’t hearing the plural of words so I ended up sitting underneath the tutor’s nose and she would emphasise the ‘s’ sound at the end of certain words. This obviously worked quite well as I managed to pass the shorthand exam and gain 120 wpm, which is fairly speedy!
When I was in my early 30s, I obtained a referral to see an NHS specialist who thought that I would benefit from wearing a hearing aid, which I did and managed to live a reasonably normal life both working as a school secretary and bringing up two children. In my 50s, however, for no known reason my hearing has been on a downward spiral and work became so stressful (a deaf secretary in a busy school environment isn’t ideal!) that I decided to retire at the end of my 50s. I now wear two powerful aids and still struggle to lead a normal life.
Until recently, I assumed that I was either born with a hearing problem or it was as a result of an illness in early childhood. However, my mother became profoundly deaf in her 80s and the specialist I saw two years ago believes that it could be a hereditary condition. As my mother had good hearing until her 60s it never occurred to me that my problem might be genetic as it’s not uncommon for older people to suffer some degree of hearing loss. I also have a recollection of my mother mentioning that her grandmother was deaf but again I think this was in later life.
Sarah: How does it affect your everyday life?
L: It affects everyday life in numerous ways. We use our ears all the time, without even thinking about it. Try wearing ear plugs for a day and perhaps you might get a sense of what hearing loss is like. Sound is all around us, e.g. pleasure (music), speech, warnings (alarms, buzzers). In the home I use subtitles when watching TV. I don’t listen to the radio as I can hear the noise, but am unable to distinguish what is being said. Generally speaking, alarms and buzzers are high pitched tones which I can no longer hear and this is particularly frustrating in the kitchen and obviously could be potentially dangerous. The other day, I was in my daughter’s kitchen and unbeknown to me the timer on the cooker was continually beeping. My daughter was upstairs where she could hear it, so she had to come downstairs to deal with it. Even though my daughter was pleasant about it, incidents like this can make you feel a total idiot and so useless.
If there is more than one other person with me, then I can’t follow the conversation as I can now only hear if someone is facing me and therefore you miss out on so much, hearing what has been going on and why people are laughing, etc. I miss the banter and chit chat and people tend to think you are standoffish because you don’t join in the conversation.
Once I leave the home then the problem is that no one knows about my disability and if I am on my own when people speak to me it’s pot luck whether I hear them and people don’t realise why I don’t move out of their way if they have said “excuse me”. It’s amazing how often total strangers in the street or in the public toilets make some passing remark and I usually just nod and smile as I don’t want to get into the rigmarole of explaining why I’ve not heard them. I don’t hear announcements such as in the supermarkets and at airports, etc. and am aware that if I got caught up in a dangerous situation, then I could come unstuck. I don’t join clubs, go to the cinema or go to talks as I know that I shall not hear and this then becomes upsetting and frustrating.
Sarah: What measures have you taken to deal with this?
L: I wear two very powerful hearing aids which are becoming of limited use as my hearing continues to deteriorate. Hearing aids are so called because they aid the hearing that a person has left. Once a person has lost various tones, they can’t be replaced and I have lost all the high tones which are the ones usually found in speech. I find that I can hear some people better than others, depending on their voice tone. So whilst it’s true that deaf people need sounds amplified, it’s not as simple as raising your voice or turning up the volume – it’s also the clarity of speech which has to do with the tones.
I have consulted specialists and, in fact, am currently on the waiting list for an appointment with an ENT specialist. I last saw one two years ago and he thought that in two to three years’ time my hearing would have deteriorated sufficiently for me to possibly be considered for cochlear implants. Whilst these would not magically return my hearing to normal it could, hopefully, significantly improve upon my current situation.
I have instigated a visit from Social Services who provided a doorbell with an extra loud ring which I find useful and originally left several other pieces of equipment for me to try. These I have returned as I didn’t find they worked for me. The point is that everyone’s hearing loss is individual and so what works for one doesn’t work for all.
I have tried equipment from the charity Action on Hearing Loss. They have a policy whereby you can buy items, try them for up to 28 days and if they don’t suit you then you simply return them for a full refund, which is great.
I have attended a couple of lip reading classes which I enjoyed, but unfortunately there are very few of these classes available and the current economic situation has meant that these classes have suffered as councils have made cutbacks.
Sarah: Do you ever feel excluded from society and in what ways?
L: Very much so. Because of the nature of my impairment socialising is very difficult and stressful. This means that joining clubs, going to the cinema or out with a group of friends (all the things I thought I would do in retirement) are virtually impossible or, at best, not enjoyable because it’s just so stressful trying to work out what is being said and trying to keep up with the conversation. This I do find upsetting, as by nature I am a sociable person – or I was – and enjoyed a good old chinwag.
I find it upsetting not being able to understand what my little grandchildren are saying and so often when people laugh I wonder what is so funny.
Using the ’phone is a bit hit and miss – I use a ’phone I purchased from Action on Hearing Loss which has the facility to turn up the volume. I find that I can understand some people well, others I can hear but not understand and phoning big companies where there are various push button options is a nightmare – you can’t say “pardon” to an automated service! When eventually I do get through to someone and find that I can’t understand them, because of the modern world we live in, they are not able to speak to my husband on my behalf without my authorisation. Great!
Sarah: What was the most positive experience you have had in terms of people’s reactions to your impairment?
L: Probably the support that I have had from my family, especially after telling them that the specialist advised that, in his opinion, my hearing would continue to deteriorate and probably quite rapidly. They have been patient and repeated things numerous times which must be so frustrating for them – I know this because I get fed up with saying “pardon”. When we visited our family in America earlier this year, they wanted to take us to see a show on Broadway, which was a lovely thought but I explained that I wouldn’t be able to follow what was happening. After I explained that I occasionally go to shows in the UK which are captioned (these are few and far between), they took the trouble to investigate if anything similar was available in NYC which resulted in us seeing Jersey Boys where I was able to borrow an I-Caption device. This is a small handheld computer which shows the words as they are spoken. The look on my daughter’s face when she realised that I was going to be able to enjoy the show was more precious to me than the actual I-Caption!
Sarah: What was the most negative experience?
L: No particular one experience, but the things I find most hurtful are when I haven’t heard something and people say something like “Oh, it doesn’t matter”, “Are you listening? Well then just try listening harder”, “Have you got your hearing aids in?”, “If you can’t hear on the ’phone, then press it harder to your ear”. I have also come across experiences where people, upon learning of my disability, stop trying to converse with me, turn away and start speaking to someone else, to the point of excluding me altogether.
Sarah: What advice would you give to others with such an impairment?
L: Try to keep strong and positive and seek help. Investigate what help is available in the area where you live. For example, Social Services where we live loan certain items of equipment free-of-charge and there may be lip reading classes where you live which are worth attending. There is a wide range of hearing aids and other products which help the vast majority of people. Apparently, research has shown that it takes hearing impaired people, on average, 10 years before they seek help and most sufferers feel isolated, so it’s not surprising that depression is common.
Sarah: What do you wish would change in terms of society’s reaction to your impairment?
L: Deafness doesn’t mean a person is stupid, although granted they can often get the wrong end of the stick because they haven’t heard something properly. Also, I feel that there is a stigma about deafness – people don’t want to think of themselves wearing a hearing aid and jokes about the deaf really aren’t funny or helpful.
Sarah: What would you like people to know who aren’t familiar with such an impairment?
L: It could happen to anyone. Look after your ears as hearing is so precious. Be aware that playing music loudly and other loud noises can permanently damage your hearing. I sometimes see people using noisy machinery and not wearing ear defenders or listening to loud music and I wonder if they will regret it at some point in the future.
Don’t ignore someone who is hearing impaired, be patient and talk clearly to them whilst facing them in good light. Don’t mumble or cover your mouth with your hand or turn away partway through a sentence. If all else fails, there is always the pen and paper method. Yes, it may be annoying but think how much more frustrating it is for someone who lives with the problem 24/7.
Sarah: Thank you very much for taking the time to talk to me and bravely sharing your experiences with others.