Living and Working with a Hidden Disability

He gave a powerful talk and has written about his experience of not only giving the presentation, but about what it is like for him “Living and working with a hidden disability”. If you did not experience Ben’s talk yourself, his account is worth a read.

The theme of EIGCA’s 2021 Annual Conference was “Golf for All”, and President, Tim Lobb MEIGCA, asked me if I would give a presentation about myself and my deafness.

Would me in my 20s do this presentation? Definitely not.

Would me in my 30s do this presentation? Probably 50/50.

My dad always says ‘time and place’, and it felt right to do a presentation in my 40s.

Was I nervous? Yes. Was I excited? Yes.

I was well prepared with a PowerPoint presentation in case some of the members, partners, and delegates from all over the world did not understand me.

I have explained to people face-to-face or in small groups about my deafness, but never before to a large group of at least 100 people in a big conference room.

The presentation was ‘Living and Working with a Hidden Disability’. Explaining the hurdles that I had to go through in my early years, education, my cochlear implant and working life followed by a 5 minute slot in which delegates experienced deafness with the ear plugs I provided for each of them. I showed everyone how to do Deaf Golf signs for golf course features, plus finger spelling E I G C A, and they all followed along, trying them out themselves.

I was born profoundly deaf. My parents didn’t find out I was deaf until I was nearly two years old. Hearing tests nowadays will find out whether a new-born baby has hearing issues but it was not the case then. My parents chose to make me learn to speak verbally by using the palm of the hand and lip reading which was tough to do. They made the right choice.

Education was a challenge as I didn’t have communications support and had to rely on extra lessons, more time finding things out by myself/parental support. I was good at coursework, however I struggled with exams as I found it difficult to understand certain questions. I studied Architecture at university and the course suited me quite well as I had lots of studio work and relied on my friends’ notes during lectures.

I had my cochlear implant installed in 2000 when I was 23 years old and in a year out between Architecture degree courses and an architectural practice. The presentation I gave at the Conference showed a large picture of the cochlear implant and I showed the delegates how it works. It transformed my life that I was able to hear sounds that I never had in my life heard before, especially high pitch noises such as running water and birds tweeting.

As a keen sportsperson, Rugby was my first love from an early age. As I got older, it became more complex with players being more verbal, and I could not hear them as I did not wear my hearing aids. I also tried out other sports and took an interest in golf – I liked that it was an individual and team sport. I played for my school team, at British Universities level, and I also played for England Deaf Golf several times. I relied more on feel than sound as I can’t hear my golf swing, but can feel the impact on the ball whether it’s a driver or a putter.

Going from university to full time work was a challenge with people of varying ages and experience. It took a while to adapt, and I once worked for the largest Architecture practice in the UK. One of their main projects was the Wales Millennium Centre which I pointed to out of the window of the conference room. I worked on different projects in the practice up to £50m.

One day in the 2000s my boss said I could not be a project manager as I could not communicate over the phone. This made be more determined. Advances in technology have benefited me and I am able to run my own Architecture practice – PASTE Architects – and work from home. Access to Work grants from the UK Government have really helped me to make this possible as I am able to get communications support when I need it, in-person or over the internet with speech to text captioning.

I loved playing golf and when I was in my late teens, I realised that I would be a better designer than golfer. I started drawing lot of golf course design ideas. The internet was still in its infancy which enabled me to research several golf courses and access books about Golf Course Design. I have experience working with another golf course designer and am currently working on projects under PASTE Golf Design, collaborating with Steve Ritson MEIGCA of Green Tyger Design. Who knows what the future holds?

This was the first time I gave a presentation of this stature. It was tough, emotional, fun, and full of laughter. Looking back, it was an incredible experience – especially the standing ovation that I received at the end, which I really appreciate.

After my presentation, I noticed that people were more confident to talk to me as their understanding and awareness of my Deafness improved.

One EIGCA member explained to me that he had a friend in Sweden who works for Cochlear the manufacturer who made my implant – it’s amazing how far the communications we currently have can reach throughout the world.

Would I do it again? Not for myself, I would for all Deaf people so that the ‘hearing world’ becomes more aware of the hurdles we must overcome.

Never in my life have I embraced my deafness as much as I do today. ‘Tomorrow’ is another day and that was the hardest word to explain to a young child who is profoundly deaf.

by Ben Stephens, EIGCA Candidate for Membership