Deaf Awareness Week 2023

This year's Deaf Awareness Week aims to highlight how hearing loss impacts daily life and how others can help support deaf people.

In 'The Muffled Bubble', Shaw Trust Head of Learning and Development, Anne McFarlane , tells her story of how loss of hearing impacts her work life and how others can support people with hearing loss.

The Muffled Bubble

Imagine you’re in a busy restaurant with a large crowd of friends who are seated around the table. They are laughing, having fun, deeply engaged in an animated conversation, with several side conversations going on in tandem, all speaking in their native language, let’s say…. French. Using your rusty, school French and reading body language, you understand parts of the conversation. You laugh along when they laugh but struggle to really follow the nuances of the discussion sufficiently to have the confidence to contribute. You gather they are talking about a holiday, but is it last year’s holiday or is it next year’s holiday? They move on to discuss food, but is it food they enjoy cooking, or food they want to order? How about the film they are they reviewing, are they recommending it, or are they dissecting its plot? Exhausted from trying to interpret the chatter and lacking the confidence to contribute appropriately, you gradually withdraw from the conversation and focus on eating your food, surrounded by well-meaning, happy people who are speaking in a language you don’t fully understand.

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This is my world, every day, in every conversation. Particularly in groups, or in places with noisy backgrounds, or with low lighting. It’s not French I struggle to understand, but my native English.

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I am hard of hearing. Even with hearing aids, I depend a lot upon lip reading. I live in a muffled bubble, requiring intense concentration and perpetual real-time deciphering of conversation fragments to collate structured, meaningful sentences.

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Every conversation is a jigsaw for which I only have some of the pieces, and with those pieces, I try to visualise the whole picture. It’s a constant mental challenge – hearing loss certainly doesn’t affect the brain – in fact, a whirr of rapid thinking and connecting information from sound bites is constantly in progress inside the mind.

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For years I only disclosed my hidden disability to a limited few; I didn’t want to appear ‘different’ or ‘weak’ or be a burden to others. I certainly didn’t want this to define me. I thought being hard of hearing might limit my professional success. Virtual meetings over video links are brilliant at hiding hearing loss as the video screen allows for easier lip reading, people talk one at a time, and background noise is usually non-existent.

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While video meetings conveniently disguise hearing loss, in-person meetings present challenges. Recently, towards the end of an intensive day at an in-person meeting in a room with poor acoustics, the light was fading, and it became increasingly difficult to read the lips of those around me, many of whom I had met for the first time that day so had no awareness of my situation. I was deciphering less and less of the conversation, and feeling more and more isolated. I wanted to make my comments on the subject, but was unsure if those points had already been made, or if the topic of conversation had moved on. I didn’t want to appear foolish, so I stayed silent. This frustrated me as I was not making my views known and I felt my colleagues would wrongly assume I had no opinion on the subject. This wasn’t their fault; they didn’t know my situation, because I hadn’t told them.

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From this, and other awkward experiences during in-person meetings, I realised I have a choice: stay silent or speak up; be understood or be misjudged; be more open about my condition or continue to hide it. If people don’t know I’m struggling to hear them, I come across as detached, unfriendly and lacking in opinions. To empower others with the knowledge and insights to appreciate and respond to my situation, I must change.

• I know you have amazing stories to share; I want to hear them.
• I know you have hilarious jokes to tell; I want to laugh at them.
• I know you hold great conversations; I want to join them.

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This will only happen if I have the courage to share my story and explain the support I need to be able to fully contribute. And I am not alone. Many of us face unseen challenges and have stories to tell. If we don’t share that information, we deny others of their understanding; and if we don’t allow others the opportunity to understand our situation, people may jump to the wrong conclusions.

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We are fortunate at Shaw Trust to work with supportive colleagues in an organisation that values caring about people and being inclusive. To others with hidden disabilities and invisible illnesses, I encourage you to be brave, speak up and share your stories. If we don’t trust others with our stories and explain our challenges, we will sit on the fringes and may not fully contribute to projects. When we have the courage to speak up, we will be better understood, we will be able to add value to those projects and we will achieve success for the professional skills and experience we contribute.

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We can make a difference by being brave and opening up about our conditions, and I know Shaw Trust colleagues will respect that honesty and not just offer us a seat at the table, but involve us in shaping the conversation.

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I am hard of hearing and I am proud to be the Head of Learning and Development at Shaw Trust.

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Thank you for hearing my story, now I want to hear yours.

Tips to involve people who are hard of hearing, include:

• Face them when talking and switch cameras on in video meetings
• Seat them where they can see everyone in the meeting
• Reduce background noise
• Ensure the lighting is strong
• Speak clearly in a normal voice
• Try to talk one at a time
• Provide written handouts or slides to accompany verbal information
• Be patient when asked to repeat something!

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Link to the RNID website for Deaf Awareness Week

Heading image description: close up photo of woman smiling. She has brown hair and is wearing a black jacket, with a shirt. She is sat down, there is a white wall behind her, and there is another person sat to her right, mostly out of shot.