It’s #WorldHearingDay so I thought a short post about how it feels to be #deaf might be apt! I usually write about Ella and our experiences about learning from her. This has been a latter learning curve, and it’s made me think about and acknowledge my own #disability more.
Some facts to start us off in case you didn’t know…¹:
- There are 12 million people with hearing loss across the UK, that’s around one in six of us.
- By 2035, we estimate there’ll be around 15.6 million people with hearing loss across the UK – that’s one in five.
- There are 50,000 children with hearing loss in the UK. Around half are born with hearing loss while the other half lose their hearing during childhood.
- An estimated 900,000 people in the UK have severe or profound hearing loss.
- We estimate that there are at least 24,000 people across the UK who use British Sign Language (BSL) as their main language (although there are likely to be more that we don’t know about).
- More than 40% of people over 50 years old have hearing loss, rising to 71% of people over the age of 70.
- Around one in 8 UK adults has tinnitus.
Most of you will know I have a moderate hearing loss, and others won’t at all. I’m a master at disguising it, often to my own detriment – concentration fatigue is a very real thing. Ian Noon wrote about it brilliantly here:
But I do also think the fact that the impact of deafness doesn’t just manifest itself in communication is ever really that well understood. It’s about the energy involved in lipreading and being attentive all day long.
Processing and constructing meaning out of half-heard words and sentences. Making guesses and figuring out context. And then thinking of something intelligent to say in response to an invariably random question.
It’s like doing jigsaws, Suduku and Scrabble all at the same time.
It is. And it is exhausting, and as Ian points out we don’t think about this enough perhaps when we work with, educate with, live with or are with #deaf people. Do we even consider deafness enough when we are supporting children within education, I often wonder. With the ever shrinking number of QToDs (Qualified Teacher of the Deaf) and people specifically trained within sensory loss, how will we ensure that we retain a rounded, whole view?
When I was going through school, way back in the 80s and 90s, my hearing loss was known about, but perhaps just seen as something to ‘get along with’. Investigations at the then General Hospital in Newcastle, meant a day spent having every test imaginable under the sun. Heart, eyes, ears, bloods, it went on forever. They were, I understand from my Mum, trying to work out why our family had a history of deafness and what it stemmed from. The outcome back then was termed ‘nerve deafness’, which you would refer to now as ‘sensorineural deafness’. This ‘is a hearing loss in the inner ear. This usually means that the cochlea isn’t working effectively. Sensorineural deafness is permanent.’² I didn’t think anything of it really – within my immediate family there are varying degrees of congenital deafness – it was my ‘normal’. At school, I was a hugely motivated student up until around 12pm and then I would spend afternoons incapable of taking in much more. Luckily for me, in those days, many an afternoon was PE or Art, or Drama. So I could physically learn, and give my ears and brain a break.
When I got to University it was easier again, to manage, because you are in control of your own learning and that meant I could manage the breaks I needed more. I still hadn’t grasped quite how much the fatigue affects people though. Throughout my earlier working life, within business, I was often desk bound, which did nothing for my concentration levels. Again from around midday, I found the same overwhelming tiredness. I can recall sitting in meetings having to drink water, dig my nails into my palm, try and focus on writing – anything really, to stop me from closing my eyes and dropping forwards. It was embarrassing and I still hadn’t quite grasped that it was related to my hearing.
When I had my children, it became a journey of understanding their sensory loss, as much as my own. Through their experience, I have been able to understand myself better and actually feel ok with saying ‘I’m deaf’. The things I used to find terrifying (like asking to sit at the front of class so I could hear) I can do with no problem now – you will always see me at the front of any meeting or conference, because I need to see the speaker’s mouth to lipread and body language to confirm what I think I’ve heard, without adding to the concentration level required, around the sound. Thinking about fatigue and the relatively small needs I have, makes me think about the differing needs many students have – that the things that would have helped me, are often discussed in relation to many children, if not all – movement and breaks, having balance in your day, adaptations to support – small things can have a big impact. Gareth Morewood (@gdmorewood) often discusses the benefits of ‘whole school approaches’ supporting everyone in the space. In my lay opinion, this is what we need so much more of, for everyone to thrive and learn.
I don’t wear hearing aids – yet, but I may have to, and yet I’m not sure how much that will help me with concentration fatigue. My son only wears his within school, he dislikes using them elsewhere, mainly because they exhaust him. There’s a theme around ‘getting used to the sound and the brain will adjust’ but I’d say personally it’s also about choice, and what works for you as an individual. Blanket approaches rarely work for everyone, as we know from many walks of life. A recent, small sample study looked at the impact of fatigue and why further research is needed to understand how hearing loss impacts on people,
‘The different levels of impact that hearing impairment has on fatigue may be partially explained by the diversity of lifestyles (i.e. different levels of work and social activity) and differing utilisation of coping strategies’³
It’s a really useful piece to consider, if not to understand more about concentration fatigue, but also to affirm how different every #deaf person is, which is probably the part I liked the most – like anyone else the focus for support and understanding is about seeing the individual, as it should be.
³ Jack A. Holman, Avril Drummond, Sarah E. Hughes & Graham Naylor (2019)
Hearing impairment and daily-life fatigue: a qualitative study, International Journal of Audiology,
58:7, 408-416, DOI: 10.1080/14992027.2019.1597284