Преминете към съдържанието

Can you share with us a bit about your personal journey with hearing loss and how it has impacted your life?

My deafness is congenital in that I was born Deaf. My mother, while pregnant with me, was a teacher in Manchester and a pupil who had German Measles (Rubella) attended her class during the first two weeks of his illness when it is not apparent and yet is still contagious. As a result I was affected by the presence of the Rubella virus which affected my development in the womb. Rubella is dangerous to developing foetuses as it can cause many problems including limb deformity, brain damage and, of course, hearing loss.

My hearing loss itself is caused by the absence of many of the small hairs in a part of the ear called the Cochlea. The Cochlea is the part of the ear that detects sounds and converts them into neural impulses for transmission onto the brain. My hearing loss is in the severe to profound range in both ears (in medical parlance I have bilateral sensorineural deafness) which means that I am unable to hear anything except the very very loudest sounds without my hearing aids.

The things that many take for granted are often denied to Deaf people. The ability to go to sleep listening to music, the ability to enjoy birdsong is another.

Many, many, years ago I was fortunate enough to be a member of the YOC, the junior section of the RSPB, at The Lodge (RSPB HQ) and our group was led by the fabulous Peter Holden who was a terrific educator and leader.

One day we went on a trip to a local nature reserve, known, among other things, for the reliable presence of Glow Worms. This particular trip was more general and at one point we were walking across a good sized clearing with tall grassland in which we stopped and listened (well they listened, I just stopped). Peter then helped everyone hone in on the sound of a Grasshopper Warbler….

I’ve never felt so left out in my life and it stuck with me for over 40 years. No-one’s fault and I’m not bitter about it; it happens a lot.

Anyway, to the present. Whilst I can hear some birdsong and identify some. The app I use (Merlin) helps flag up songs that I may not necessarily a. have heard or b. can identify.

My Hearing Aids can link directly to my phone (uber headphones if you like) without any external noise creeping in. This allows me to listen to the recordings without outside interference and focus on the song at length. It’s still difficult but it does help. The key thing is to know the habitats of the birds ‘identified’ and their usual distribution which then helps you eliminate the rogue ID of, say, a Cirl Bunting….

With thought and a process of elimination an app can be a terrific help but also a great boon to those who would normally miss out. It’s certainly helped me appreciate, so much more, the (very) rural idyll that I live in.

What are some common misconceptions about deafness that you’ve encountered, and how do you educate others about the realities of living with hearing loss?

The classic line from many people is still the immortal ‘You don’t look Deaf’…

The idea that lipreading means you can understand everything is another long-held misconception. Lipreading is an art, that requires a tremendous amount of practice and concentration, and involves hearing half, seeing half, and putting the two together and hoping to God that the combined mish mash actually makes sense in the context of the conversation. The level of concentration required often results, for many Deaf/HoH people, in concentration fatigue which results in tiredness earlier than a similar conversation would for a Hearing person. Concentration fatigue, as it builds, makes conversations harder over time so, consequently, many Deaf people need breaks to recharge.

What are some of the biggest communication barriers you face as a Deaf person, and how do you overcome them?

The biggest communication barriers, for me, are chiefly around understanding people with accents, those who talk fast, softly spoken speakers, those who have heavy beards etc. I very much prefer to communicate via the text medium rather than by phone/audio. If I do have a meeting I try and ensure it’s a video call so that I can lipread which eases the issues to a degree although its also complicated by several people talking at once which can be overwhelming and isolating at times.

Can you describe some of the challenges you face as a Deaf person in your workplace or daily life, and how your hearing dog helps you overcome them?

Many people think that Hearing Aids restore hearing for Deaf and Hard of Hearing people to near perfect levels. Sadly the truth despite, and possibly because of, technology being so ‘advanced’ these days does not match these perceptions. The reality is that although technology has moved a long way from the simple amplification of sounds to noise reduction and sound shaping and programmable hearing aids the hardware is ever more delicate due to miniaturisation and complexity. For example, ears sweat… a lot… Wearing Hearing Aids entails wearing plugs of pliable plastic resin which seal the ear.

This means that sweat doesn’t escape the ear via the normal way and instead rises along the tube towards the Hearing Aid itself. Even though they are dried out and aired nightly inevitably some moisture will make its way into the fragile electronics. As we all know water and electronics are not the best of friends and when they do meet typically they make a new friend called rust. I have had one Hearing Aid die for certain via this method as I saw it opened up in this state.

Additionally Hearing Aids now have multiple microphones. These are usually covered with a very fine gauge gauze mesh that needs to be replaced from time-to-time. Further, there is now a small sponge type material placed in the elbow of the tube (the part of the tubing that is directly connected to the Hearing Aid itself) this also needs to be replaced from time-to-time as well. Besides these items there are countless other things that can, and do, go wrong.

All of these things can have an effect on the quality of sound being received by the hearing aid and also (in the case of the elbow sponge) output by the Hearing Aid. Sounds can be muffled, deadened or affected in other ways or totally blocked in some instances. It can be simulated to some degree by hearing people when ears are clogged with water after swimming. The lucky thing is that in that case you can be sure that it is only a temporary effect and so not at all distressing.

In what ways has having a hearing dog improved your independence and quality of life?

Here’s an extract from my blog from before Alvin and I were paired…. I may be overstating it somewhat, but I do tend to get slightly nervy when staying in hotels or away from home, especially when I am on my own. I always, half-jokingly, said that the first sign I’d get that there was a fire in the house when I was asleep was my big toe getting slightly warm! There is more than a grain of truth in this and it does, sometimes, leave me sleeping restlessly when I’m on my own. This often ends up with me waking up on a regular basis and then taking a while to get back to sleep.

A similar situation occurs, as it did last week, if I have to leave early (like Oh My God is this what it’s like before breakfast early) to be onsite. I often end up with the double-whammy of first of all not being able to get to sleep in good time and then waking up on an almost hourly basis to avoid oversleeping!

Alarm clock? Tried that; doesn’t work as i have an excellent internal body clock that means I usually wake before the alarm but this process goes to pot on days when I have to be up on time and I end up getting paranoid about sleeping in. Last Tuesday was a typical example with me waking up at 3.30, 4.45, 5.40 and 6.40 before giving up the ghost and just staying awake anyway for fear of actually oversleeping after all.

So what do I do to make sure I get alerted in the event of fire when staying in a Hotel? Absolutely nothing is the answer to that one… I tend to duck out of mentioning my Deafness to reception staff for God knows what reason but probably because of that inner feeling of not wanting to either put people out or feel I’m deserving of special consideration. I hate being different and yet clearly, I have to acknowledge that I should make some concessions on my own behalf and accept that there are some things I really should do no matter how demeaning it may seem or that it marks me out as different. I guess that last statement is the key to all this; I really do prefer to stay in the background and to not be noticed.

Since Alvin has been in my life, he has been a reassuring presence and companion who not only provides companionship and company (this is an often-forgotten reason for the presence of an Assistance Dog as many disabled people can feel isolated and alone).

Alvin also, among other things, alerts me to alarms and fire alarms which enables a greater sense of reassurance when you consider the issues I faced previously.

Can you share some strategies or technologies that you use to navigate everyday situations as a Deaf person?

I find that there are several ways to ease the difficulties, or potential difficulties, that can be encountered on a daily basis. First among these is ensuring that conversations, where possible, are one-on-one and/or in a quiet corner/location. I usually try to work in a meeting room or office, not because I’m anti-social but, because this eliminates the background hubbub most open plan offices bring.

I also make heavy use of captions for meetings and videos which helps reduce the levels of concentration needed to hear and, instead, allow me to focus on the content more.

If you need to use captions, Google Chrome (other browsers are available) has a auto captions option which can be enabled by going to settings and searching for ‘Captions’. Teams also has an option for captions too and this is enabled on a meeting-by-meeting basis by meeting organisers.

As mentioned in an earlier question I’ve used apps on my phone to help make sense of the world around me such as Merlin for identifying birds in the vicinity. All these things help lessen some of the isolation and feeling of missing out.

Have you experienced any memorable moments of misunderstanding or humorous incidents related to your deafness that you’d like to share?

Once, one of my Hearing Aids failed while away from home for work. While following the events from afar my partner decided to try and help by finding out where I could get something done about the misbehaving piece of technology. Here’s her account as posted on Facebook:

Mike’s hearing aid is broken and he is away from home. I called 111 to see if they could tell me where he could go. It went something like this…

Me: My partner’s hearing aid is broken he can’t hear anything without it. Can you tell me where he can go?

111: Not really, we need to be able to ask him some questions.

Me: Can you tell me what the questions are so I can get you the answers?

111: No they have to come from him. Can’t he call us?

Me: No he won’t be able to hear you.

111: If you call him will he be able to hear you?

Me: No.

You can draw your own conclusions…

Finally, during Deaf Awareness Week, what message would you like to convey about living with hearing loss and the importance of understanding and supporting Deaf individuals in our communities?

Remember that whilst you might see a Deaf (or any disabled person) experiencing difficulties only once a day or week, remember that the individual involved will have already, that day, had several challenges that day. For example, they might have missed out on conversations or interactions, they may have been refused access to a shop or service, they may also have been denied transport or taxis, whether by lack of appropriate access or by intervention from staff. All of this has a cumulative effect over the day or week. Remember that phrase from Covid times and be kind, support people, and, if need be, defend them and their rights. Don’t be shy to step in and help out.

The best ways people can help when communicating with a Deaf person can be summarised as follows:

  • Get their attention. Use simple gestures, like waving, to get their attention.
  • Be patient.
  • If there’s a bright light source, face the light so the Deaf person can see your face without it being in shadow, so they can lipread you.
  • Ask someone how they want to be communicated with.
  • Rephrase what you said.
  • Face the person you’re speaking to.
  • Use an interpreter.
  • Write it down.
  • Above all, be kind and don’t think of it as a burden / annoyance (some people do believe it or not)

Кристина Макей

За автора

Кристина Макей

В качеството си на мениджър КСО Кристина отговаря за формирането, осъществяването и измерването на въздействието на нашите дейности с идеална цел, ангажиментите за социална стойност и партньорствата ни с благотворителни организации.