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My experience of working and volunteering with hearing loss

By Roland Hilton

When I was in my early thirties, my wife and I had bought a house that we really liked and we had a lovely young family.  I had a great, almost unique job and we were both working really hard to support the mounting costs and all that life brought along each day.  Life felt really good.  All was going really well.  Then it happened.

I awoke in the very early hours one morning with no idea what was causing an horrendous, continuous noise that seemed to be pervading everything, me included.  It was explained later that I had severe tinnitus due to an ear infection but it was a day or two more, after tests, before I was fully aware of having severe to profound sensorineural hearing loss in both ears.  The tinnitus had masked it all until then.  This was in the very late 1970s, before the Internet, before digital text and before there was any useful help at all to be found.  I was given just a single analogue hearing aid and sent on my way.

What little I could make out of human voices through my newly acquired noisy world was very much akin to “Donald Duck” speech, squeaky and distorted. 

After a while communication became a little more meaningful and I realised that for the second time in my life, I was “learning to hear”.  As a newly born baby the world of sounds that we hear takes a good year or so of thought processing and understanding before the magical first words are said.  I was going through the same process of understanding in my thirties, trying to make sense of my new world of sounds.  

I waited a few days, which turned into weeks, for it to “get better”, with despair and despondency taking over as I saw myself without a future; trying to scrape by on benefits, to salvage whatever I could for my wife and children.  That was my grieving period.  With all loss there is a period of grief and sorrow where we hope for the impossible while we begin to fully grasp what has happened.  But with all loss there is never any correction, we have to accept the loss and face the future as different people – what we were, without what we have lost.  I clearly remember one afternoon sitting down and doing just that – desperately looking at exactly what we had left, our savings, qualifications, skills, abilities and so on, to see if it all had any worth. 

When I was struggling to cope just one-to-one at home, I could hardly envisage the prospect of returning to my job, at the centre of activities as a section leader, but nothing else had emerged and I simply had no choice – I somehow had to make things work with what I had left.  I knew nothing about these things at the time but I was mentally accepting what I was, after losing my hearing, and determined to make it all work.  I had come to terms with my loss.

Back at work, what I had failed to appreciate was that with my experience in an almost unique job I was very difficult to replace.  My management wanted me to be able to cope and pick up from where I had left off, to avoid trying to replace me.  People were very aware of my hearing loss and they tried to help but there seemed to be no recognition of the fact that I was a different person.  It was a very difficult return to work but things did not fall apart.  I was rapidly learning new skills, learning how to get results working the way I had to.  A few sideways moves were disappointing. I could readily feel that the trust and confidence my managers had in my ability remained very fragile but I pressed on, gradually regaining belief and enjoyment once again. 

Some years later in a management reorganisation, I was on the promotion ladder again to a senior position in the organisation.  I was delighted, overjoyed but scarcely able to believe it was true.  I had arrived.  But it was more than just the promotion, wonderful though it was.  My manager at the time was a Director of the Company who I had known for some years and my real prize was the realisation that I had finally managed to regain his trust and confidence, and that of the company as a whole.  All the hard work, determination and perseverance had paid off and I was able to remain employed right up to normal retirement.  Looking back, I was immensely proud that from seeing myself without any hope or future immediately after my hearing loss I had managed to do that.

A good few years before my retirement (but around 15 years after my hearing loss) my wife and I attended an Intensive Rehabilitation Course at Hearing Link (The Link Centre as it was then – pictured above).  We had never met anyone with significant hearing loss before and the experience was astounding.  I learned a lot, my wife learned just as much but I clearly felt the value of peer support and it had to continue.  I became a volunteer with Hearing Link and became a trustee with two other deaf organisations.  I met dozens of other people who had experienced significant hearing loss themselves and had followed a similar journey to myself at a time before the digital age when it was simply a case of “sink or swim” with virtually no outside help in any form at all. 

Statistics from the time suggest that many did not come through that  process very well, but those who did came from a school of hard lessons and seemed to be very eager to use all they had learnt.  We fully accepted our hearing loss and were proud to see ourselves as different but competent people.  It is easy to see the negatives of hearing loss but the new skills we had learnt, the skills arising from proactive self-management can be very significant positives. 

The years that followed were amazing.  The new charities that were emerging for people who had acquired hearing loss, or who were deafened, had such a vast and virtually untouched diversity of needs to tackle and it all presented endless opportunity.  The Link Centre had a very strong commitment to volunteers and we involved ourselves in the activities the Charity had to offer, from escorting MPs and Patrons and helping the CEO, right through to stacking the chairs, helping with the washing up and everything in between.  We developed new skills, like public speaking, to local groups and at national conferences.  I spent a good few days around the UK with the British Library/Hearing Link “Unheard Voices” project team, interviewing people with Acquired Profound Hearing Loss (APHL) to record a living history of their experiences and the consequences that arose.

There was much more.  With colleagues in other charities, I was eagerly trying to raise public awareness of hearing loss issues by campaigning and responding to consultations.  Locally as a trustee, I was helping to build Action Deafness from a near defunct local charity into the exciting charitable company it is today.  My life as a volunteer gave me all I could wish for; my volunteer colleagues were a delight and the work was plentiful.  We were having a party, literally at times – and retirement didn’t exist. 

The good life went on for a few years but as with all small charities, the future can be a bit uncertain and to create a stronger organisation, The Link Centre merged with Hearing Concern to become Hearing Link.  The work I had enjoyed became less accessible so I moved on to become an Outreach Volunteer, at times travelling many miles across the UK to meet and talk to people with very recent substantial hearing loss who could find no other help.  I met many people with whom I could fully empathise with and many others who were a challenge; people with NF2, people with hearing loss and macular degeneration as well.  Working with Social Services gave me experience of dealing with people that had hearing loss and significant mental health issues and even trying to find ways to help a Polish boy who had crashed his motorbike and lost his hearing – but could speak no English. 

I was really enjoying broadening my experience (and my skills as well) but as time went by the assignments got less and less until the dreaded Covid arrived and the work went away altogether, for years.  After Covid I had intended picking up the pieces again but it didn’t happen.

In late 2022 my wife and I moved home from Leicestershire to Gloucestershire to cut all ties with the past and make a completely fresh start.  I resigned from all my volunteer and trustee positions.

There will always be people with hearing loss achieving great things in life but writing this article has left me thinking that the people who experienced substantial hearing loss prior to the early 1980s – the ones I got to know so well – and the volunteer activities that followed on shortly afterwards, were all a product of the age.  That age has passed, times have moved on.  People with that background are not there anymore and they can never come back.

For me that is a significant loss.

Is it time for me once again to grieve my loss, come to terms and build my life afresh around the person I am today in 2023?

If anyone in the UK, particularly in the south-west, wishes to get in touch or even meet up, if appropriate, to help me on my journey, please contact me via Alison and I will do my best to respond.