https://civilservice.blog.gov.uk/2019/05/22/personal-disability-stories-11-julias-and-andys-stories/

Personal disability stories: 11 - Julia's and Andy's stories

You may be aware of Deaf Awareness Week, which took place between 6 and 13 May. Hopefully, you may even have taken up the opportunity to attend one of the various events within individual departments to mark the occasion. Building on this, I am delighted to introduce Julia and Andy, who have lived experience of hearing loss, to share their personal stories.

Philip Rutnam

Julia Walsh, Financial Reporting Council

Portrait photograph of Julia Walsh
Julia Walsh

Action on Hearing Loss estimates there are about 11 million people in the UK with some level of hearing loss. Many people go undiagnosed, failing to realise they are missing out on certain sounds.

About three years ago, I was listening to the radio while lying in bed and realised I could only hear on one side. I was diagnosed with otosclerosis, a form of hearing loss where the small bones in the middle ear effectively become fused and unable to vibrate properly. Both ears are now affected to differing extents. I also have tinnitus, the perception of noises that have no external source.

Losing my hearing has not been a simple case of things getting quieter. Different pitches and frequencies are impacted very differently. My asymmetrical hearing loss means I cannot tell what direction a noise is coming from. This is most noticeable when trying to find my mobile phone. Thankfully, I can block the tinnitus out most of the time, as for me it is like office white noise. But I never have silence.

At work, I can really struggle in some meetings. I need to sit in the right place to catch all the conversation. Larger meetings and training are another challenge. Colleagues may think I am keen, sitting near the front, but I am just trying to hear! Another difficulty arises when speakers do not use the microphones provided. Individuals with hearing loss may have purposely sat near the speakers, and a loud voice is no substitute. Also, many conference venues have a hearing loop – this transmits sound directly into certain types of hearing aid. If the microphones provided are not used, the benefit of the loop is lost.

I was prescribed a hearing aid early this year. I should use it all the time so that my brain relearns how to filter noise. It immediately made meetings much easier, but working in an open plan environment is more difficult, as everything is amplified. So, I was given a 'mute' option. I am still working on optimising the settings with my audiologist. I’ve also discovered ways of using my phone to help me. Phone calls with ear buds (earphones) are currently much easier than using my hearing aid, and it is also possible to use the phone as a speaker system.

If you find yourself often turning up the volume, or asking people to repeat things, I would definitely recommend getting a hearing test. While I am in the foothills of life with a hearing aid, I know that getting to grips with it now should make my life easier in the future.

Andy Wight, Competition and Markets Authority

Photograph of Andrew Wight standing outside the door of No. 10 Downing Street
Andrew Wight

As a child I was an avid reader. One book that made a lasting impression was ‘Yes Minister Diaries’ and sparked a lifelong interest in politics. I was confident that, if I worked hard enough, I too could work in Whitehall.

Finding out I had a rare genetic illness that would eventually take my hearing made me scale back my ambitions. I assumed that there was no future for me in Whitehall. Training as a teacher seemed to be a more stable choice. I had six great years as a teacher and head of department before my hearing finally and very quickly gave up.

Applying to the Civil Service Fast Stream on a whim seemed to be a long shot.

From the outset, things were different; the recruiters were genuinely interested in what I had to say. They were proactive in supporting me through the recruitment process and recognised a potential that I had forgotten I had. With their support and encouragement, I gained a place on the Fast Stream. It looked like I was off to Whitehall after all.

Starting in a new organisation, surrounded by strangers and in a new profession, is daunting enough. Starting there when you cannot hear anything was terrifying.

Whilst my new employers were happy to organise any support I needed, neither of us knew what was available in the highly sensitive environment I was now working in. We tried notetakers, volunteer scribes, on-site palantypists, and even frantically scribbling on post-it notes. After six months, I was introduced to Lipspeaker UK and found that lipspeaking works best for me.

Last year, I finished the Fast Stream and a Master's Degree, and now work in the Competition and Markets Authority (CMA) as a Senior HR Business Partner. From the word go, my new team at CMA have been welcoming, open, honest and flexible, because they already knew what support I needed.

Since I joined the Civil Service, I have met many more hard-of-hearing and deaf colleagues. I have used my contacts and experiences to help co-found the Civil Service Deaf and Hard of Hearing Network.

Top tips

Andy and Julia have suggested some helpful communication top tips here for communicating with a colleague who is deaf or hard of hearing, which you can read here.

Links with other conditions

There is a link between untreated hearing loss and other conditions such as depression, anxiety, headaches, muscle tension, stress and even increased blood pressure. Whilst some conditions such as tinnitus are incurable, there is a range of technologies, therapy and support to help sufferers cope. Your Departmental Workplace Adjustment Team or Civil Service Workplace Adjustment Service will be able to signpost you to available support.

 

Thank you to Andy and Julia for sharing their stories, and passing on some very valuable top tips. As they have highlighted, what works for one colleague may not work for another. It’s very important to make sure you’re paying attention to what your colleague is telling you is best for them. You can find more information from theInternational Communication Project and Action on Hearing Loss.

I would also like to mention one of our more recent employee networks, the Civil Service Deaf and Hard of Hearing Network. The network primarily offers support to any member of staff who is, or cares for someone who is, either deaf or hard of hearing, or anyone interested in understanding more about deafness and hearing loss. It provides an opportunity for everyone to come together collectively as a group to discuss, share and support each other on all matters relating to deafness and hearing loss.

You can find out more on the CS Deaf and Hard of Hearing Network’s GOV.UK page; and the network is on Twitter@CSDeafHHearing.

Philip Rutnam

Follow Philip on Twitter: @PhilipRutnam.

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8 comments

  1. Comment by Claire posted on

    Thanks for sharing your stories, which I can relate to, having lost most of the hearing in my left ear over a period of five years, due to Meniere's disease , and undergoing the same experience now in my right ear. Meniere's also causes horrible vertigo attacks and severe tinnitus and it was initially the unpredictable vertigo that caused the biggest problems at work. It's not possible to do anything much when you have to keep your eyes shut tight and your head perfectly still to prevent projectile vomiting! Fortunately I had fantastic support from my manager and DD, which resulted in me still working for DfE several years later, based at safely at home and able to do everything I could before all this started. Now when I have vertigo it tends to be less dramatic and of shorter duration. I can have a quick lie down and then get back to work. New technology means I can turn up the volume in Skype calls and use my headset when the tinnitus is particularly intrusive. I'm so glad to hear from 2 colleagues who are managing well in spite of their deafness as it gives me hope for the future, and I hope will help others grappling with similar issues to see that there is life beyond losing your hearing.

  2. Comment by Kathy posted on

    Thanks for your stories. I have a hereditary conditions that means I will eventually be completely deaf. As Julia mentions a lot of people assume deafness is about volume but it is not. I first realised I had problems as there were two men on my team who I could not hear/understand. It transpired the tone of their voices falls in to the area of sound that deteriorated first.
    Nine years down the line I have two hearing aids which can be a blessing and a pain. As they amplify sound open plan offices and meetings can be problematic. I too sit near the front to hear in meetings and if the noise in the office gets too much I turn them off 🙂 - that's the blessing.
    I struggle using a phone with my hearing aids in, even though they have a telephone setting, so I remove the one listening to the phone and turn the other off to cut out background noise. Unfortunately this is gradually becoming more difficult so I'm going to have to explore other options.
    Hearing loss is one of the hidden disabilities so if I could ask one thing it is that people are patient with others, both in work and out. The person you have just spoken to may not be ignoring you, they may not be able to hear you.

  3. Comment by Jeanette Willows posted on

    Thanks for sharing your stories. I have perforated eardrums due to having an abscess in both ears as a 2 year old. My hearing gradually worsened and I had an operation to try and correct the perforations which was unsuccessful. I was given a hearing aid at the age of 13 but did not get on with it I persevered through school and managed to leave with 7 'O' levels after staying on for 2 years to take shorthand and typing. I applied to the Civil Service as an Admin Assistant but was unsuccessful. I then applied again as an Admin Officer and was successful. This was back in 1976 when HSE was being set up. I attended an interview and was successful in getting a post and have never looked back I have met some extraordinary people and made some great friends along the way. I have never let my disability get the better of me.

  4. Comment by Gill posted on

    Thank you for your blogs and for sharing your own stories. As someone who has been hard of hearing since birth I found it very interesting to read about your experiences with regards to losing your hearing later in life and the challenges you faced. There are many levels of hearing loss from mild to severe and this needs to be adjusted for accordingly for each individual. I can totally relate to the issues in trying to hearing at meetings, dealing with the noise levels in the office, and the various ways of how we communicate with others. As has been stated in the blogs, hearing loss is one of the hidden disabilities and people should remember to be patient and mindful of others who perhaps may have hearing loss.

  5. Comment by Denise posted on

    Thank you for sharing your stories. I can relate especially to Julia, as I have Otosclerosis in both ears and was diagnosed in the 80's when I was about 29. By 1998 I was really struggling to hear anything in meetings or normal every day engagement and invested in hearing aids. They changed my life and allowed to me hear what was being said in meetings, by colleagues and start joining in life again, as I had by then started to shun social events as they were no fun, standing in the corner not able to converse with anyone.
    While hearing aids make things a lot better, especially in the office, they are not the same as normal hearing, and loud background noise, even with the most up to date hearing aid,s still makes it difficult to understand people; also, concentrating on listening for any length of time can be exhausting. I have been very open with my hearing loss and have found in most part my managers & colleagues have been supportive and helped me by making sure I have heard things, checking with me where best for me to sit (in quieter parts of the office away from noisy walkways) and repeating things I don't catch or understand. However, deafness is a hidden disability, and because of this people forget and you do have to keep reminding them not to speak to your back and to make sure you are aware they are talking to you, as direction is not great even with hearing aids! However, as I have now worked full time for 41 years, 34 of which after my diagnosis, it is possible with a bit of help, plus excellent hearing aids, to have a meaningful job and be a manager.
    If you do struggle with hearing please go and have a hearing test and sort out some help - NHS provide hearing aids but you can also get more sophisticated ones from place like Specsavers Hearing & Boots which do cost but can be so much more functional.

  6. Comment by Sharon G posted on

    Thank you for sharing your experiences with us all. I too have fairly recently experienced hearing loss through otosclerosis. Mine came about as a result of pregnancy. I now wear a (NHS) hearing aid and continue to learn how to adapt to life with it. I try and explain to people that it is an aid not a cure. Typically, it tends to amplify the noise around. However hearing loop systems offer an amazing clarity for me. I just wish I could walk around with one permanently above me.
    The type of hearing loss you can experience is as different as the individual themselves. I have retained very high pitch levels of hearing such as car alarms or the very deep low tones (unlucky for my husband as I can still hear most of what he says). The bit in the middle is a complete blur; which is the volume most people speak at.
    Like other comments, open plan offices and telephones generate obstacles as lots of background noise causes brain fuzz as it tries to work out which bit of noise I am meant to be focussing on.
    By chance, I was moved desk at work from being in a very central position to one where my deaf ear was facing a brick wall. It has made a significant difference reducing noise levels to only one side - my good side!
    I am very open about my hearing loss as I appreciate that being a non visual disability, people often forget and that includes family!
    I look forward to raising awareness through our individual experiences as a way of trying to explain that it affects us all differently but please bear with us, talk to our face (its amazing how much we do lip read) and please don't be offended if we ask you to repeat yourself.
    Pardon?sorry?what? unintentionally become our overused vocabulary.

  7. Comment by Elizabeth posted on

    Thank you for sharing your experiences with us. I realised that I was losing my hearing about 20 years ago when the work I was doing at that time involved a lot of telephony. I thought it was the equipment's fault that I often couldn't hear the person on the other end of the line! Also, like Julia, if I lay on my left side in bed and the window was open, then I couldn't hear the dawn chorus. I had tests done and it was confirmed that the hearing in my right ear had deteriorated, the diagnosis being that this was probably caused by a virus at some time in my life. I'd had an MRI scan that confirmed that there was nothing sinister. On top of this I have quite severe tinnitus. To describe what I'm dealing with; imagine someone bursting a balloon next to your ear and the resulting ringing sound is with you permanently. Wearing two hearing aids does help but there is nothing to replace perfect hearing. When speaking with someone, it helps if I can see their face. As mentioned in previous comments, background noise and telephony can be a real problem especially in an open plan office. Deafness is a non-visual disability and people may assume that I can hear what they are saying. Sometimes I feel I want to wear a badge or something to make people aware of the difficulties I'm facing instead of constantly having to apologise for asking someone to repeat something.

  8. Comment by Jo Phillips posted on

    I, like Julia have suffered with Otosclerosis. Mine was strangely cause by pregnancy. The bones in your body soften when pregnant, then harden up again after the birth. For some reason this caused the bones in my inner ear to fuse, causing hearing loss. After my fist spell of maternity leave, I noticed that I was struggling to hear at team meetings, and people with soft voices I just couldn't hear at all (and started to avoid!). After my second child was born, the hearing loss was far worse, and I had to resort to hearing aids. As mentioned by many above, these were both a blessing and a curse, and to be honest I hated them. As my hearing was deteriorating, I was very fortunate to be referred to an amazing ENT specialist who told me about the possibility of ear surgery known as a Stapedectomy. It wasn't without risk, but I went for it and had the left ear operated on. Luckily it was successful, and a while later I had the right ear done. I am now hearing aid free. My hearing is by no means perfect (my team at work will tell you that!) but the surgery really did change my life and restore my confidence. I can't explain the feeling the first time I was able to hear the birds singing again without my hearing aids! I had four years of hearing loss, and it is a condition that can really affect your life, confidence and self esteem.