Rare diseases and connecting the three Ps: patients, physicians and pharma
1 February 2021Welcome to the era of the orphan drug
23 February 2022When our Diversity and Inclusion Ambassadors asked me to write a blog for Deaf Awareness Week, my first thought was ‘Wow! This is the first time, ever, anyone has asked me to write about deafness but, where should I start?’ There is so much I want to say. So, I opted to focus on my experiences working as a deaf person and share a few tips when working with a deaf or hard-of-hearing colleague.
I was born with a significant hearing loss, most likely due to a lack of oxygen at birth, but my hearing loss was not diagnosed until I was 5 years old. My mum knew something was not right – my speech was poor, I did not always respond to people calling me and I had developed my own language, which only my parents could understand – ‘dishabs’ was a bowl of food and ‘Hammu’ was my favourite cuddly toy (aka Kermit the Frog).
Child health specialists told my parents that I was a slow learner or had learning difficulties. It was not until my mum took me to her own GP, that we realised what was wrong. He put a watch next to my ear and, standing in front of me, said ‘What can you hear, Jayne?’ I replied, ‘Tick tock, tick tock’. The GP smiled, looked to my mum and said, ‘It’s a digital watch, it does not make a sound’. During my early years, I had learnt what sounds should ‘sound like’ or, rather, what noises they make, regardless of the fact that I never actually ‘heard’ the sound.
Fast forward decades later, equipped with powerful hearing aids and great lipreading skills, I entered the world of work. University was tough – I needed notetakers to join me on biology lectures, most of whom did not have a science background and struggled with the scientific terminology. I spent most evenings rewriting my lecture notes, filling in gaps from textbooks and pestering my classmates for their notes.
My first job was at a big scientific publishing house in London. Most communication was by email or even fax, which was perfect for me. After a few years, I was hankering for a change and joined a small med comms agency in Brighton. It was exciting and creative – but also a bit of a shock. There were lots of teleconferences, international meetings and note-taking at large events all over the world. I cried at my first advisory board in Dallas, as I was told to sit at the back of a dimly lit, high-ceilinged meeting room with everyone’s backs to me. There was no audiovisual equipment and I strained to listen to the heavily accented voices shouting or talking over each other as the doctors got excited about the data, spouting off random acronyms. How on earth was I going to write a report on this? My supportive colleagues back in Brighton helped me through and my audiologist suggested contacting the Access to Work (AtW) programme for support.
The AtW programme was launched by the UK Government back in 1994 and is delivered by the Department for Work and Pensions. It is a lifeline, providing vital advice and support to disabled people and their employers. Following an assessment, AtW covered the cost of support equipment, including an amplifier for my desk phone and a portable loop system for meeting rooms. Unfortunately, these did not help much as the loop system was subject to interference and the amplifier did not solve the issue of those mumbling voices.
While at a congress in the US, I discovered remote captioning – where an experienced stenographer typed up ‘subtitles’ of a presentation in real time displayed on a website. I returned home to the UK determined to find a remote captioner of my own – there were none. In the US, there were many remote captioning companies, providing captions for the deaf and hard-of-hearing in their schools, colleges and workplaces.
My assessor at AtW agreed to cover the cost of a remote captioner. The remote captioning service saved my sanity and career. My captioner would dial into the teleconference call and translate the speech into text, including the names of the people speaking, which was displayed on a secure website with no delay – at speeds of up to 275 words per minute! Finally, I was on a level playing field with my colleagues. (In many cases, they were envious of me and watched the ‘subtitles’ over my shoulder!)
The word soon got round and more and more deaf and hard-of-hearing people in the UK now have access to remote captioning support in the workplace. Unfortunately, there is still no equivalent service in the UK, so we adapt our work meetings to US time zones, where possible, to ensure we can get captioning support.
In September 2020, I moved to Sciterion; starting a new job in the remote working environment of the COVID era presented new challenges, but I was lucky and found a supportive and welcoming group of people at Sciterion. It took a while to adapt to working from home and relying on video calls as my main form of communication with colleagues and clients. However, over the past 7 months, I have learnt many things that hearing people can do to help their deaf or hard-of-hearing colleagues in the remote working space. I would like to share these tips with you here:
- Check communication preference – email, instant messaging or a video call and which platform (Zoom does not provide automatic captions, whereas Microsoft Teams does)
- Avoid using the phone or leaving messages on answering machines
- On a video call, check that there is no background noise and that you are not sitting in front of a light source, which causes shadowing and makes it hard to lipread. Also remember to face the camera
- Try to talk one person at a time and avoid talking over each other
- Avoid the temptation to speak quickly even if you are very busy. You may well end up having to repeat your sentences again and again. And no mumbling too!
- Allow additional time for question response on a video call. Although captions are displayed in real-time, an extra couple of seconds are needed to read them and then reply
- Offer help with notes/note-taking or send a summary/minutes after the call
- If you are sporting a moustache or beard, please shave it off (just kidding!)
When we eventually go back to the office, the same tips will still apply and, generally ‘speaking’, it is better to talk to a deaf or hard-of-hearing person in a quiet room where you can face each other, rather than in a noisy kitchen or open-plan office.
The theme for ‘Deaf Awareness Week’ this year is ‘Coming through it together’. This sums up perfectly my experience working as a deaf person: working together, with a great team of colleagues, we can change ‘disabilities’ into ‘abilities’.