‘Is there any such thing as a deaf child anymore?’
This was a question I recently overhead, spoken by an education professional who works with children who are deaf/have a hearing loss.
To put their question in context the lady was relating it to the different types of technology now available which deaf children can use to help them access sound.
These include cochlear implants, hearing aids, bone anchored hearing aids (Baha’s) and assistive devices such as fm systems which attach directly to the technology and to specific sources of sound with the purpose of further amplifying and isolating important auditory information – such as a teacher’s voice.
On the surface, to many, it may seem an innocent enough question, an interesting philosophical foray into the changes which have evolved over recent years and the many new choices open to deaf children, young people and adults.
It is a reflection on the technology now available and the potential of its use. Perhaps though, it is also a suggestion towards the perceptions of people who watch emotional ‘you tube’ clips of young babies who respond to sound for the first time as their cochlear implants are switched on, and who observe the sometimes astounding progress that many of our children are making with the aid of this amazing technology.
This is an expression of the assumption which many hearing people believe – that equipment such as hearing aids and cochlear implants ‘fix’ deafness.
The problem with the question is that in essence no matter what equipment a deaf child or young person uses (and for some children there is none suitable) to help them access sound, our children are still deaf.
This is not a statement I make for any gain but as a statement of reality. Whilst we have accepted cochlear implants for both of my sons, and they have been amazingly successful for them both, when they swim, shower, have water fights, go gorge walking, bathe, sleep and all the other numerous examples I could give of instances when my boys need to remove their equipment – they are still deaf.
At those times they cannot hear anything. Even with the equipment my older son struggles to follow tv programmes and films in the cinema without subtitles – to the point that he feels it is futile to go to the cinema without them.
Our search for family films to watch using Sky Demand at Christmas was a protracted process of not just checking age and suitability but which few we could actually find with subtitles.
Other deaf children I know still struggle to follow lessons in school, miss parts of conversations with friends and have difficulty in communicating with people they aren’t familiar with despite using equipment.
Deaf children, even with equipment, still rely on lip reading to follow what other people are saying, they still need people to face them when talking and struggle in shadows or noisy conditions.
The equipment has not made them hearing. The belief that this could be the case frightens me in terms of the understanding people have for the challenges faced by deaf children and young people (and adults). This question was posed by someone who is supporting deaf children on a daily basis and it worries me that on the surface they may not be aware of the remaining needs which equipment cannot fully meet.
I responded to this question silently in my own head but very strongly. Perhaps the depth of my reaction was tied to how I believe even in the asking of that question it implies a negativity towards being deaf rather than being a fully functioning member of a hearing world.
For our family being deaf is not negative. My daughter is four and hearing, yet from her experiences with her brothers and the wider deaf community we are part of locally she signs, she is used to interacting with deaf adults who only sign, and recently passed comment when we met a family friend who is deaf and is also teaching BSL to my older son that it’s really good that she can teach us all so we can be better at signing when we’re ‘bigger’ because she’s been good at it all her life.
Embracing the fact that my children are deaf does not mean we do not appreciate the independence and the skills which technology has given my sons in their access of sound but does mean we have gained so much into our lives through our awareness of deaf culture and the value of belonging to a deaf community.
The saying is ‘It takes a village….’ and for my children I know that is true. They need more than we as a hearing family can provide, the need older deaf role models, they need deaf peers, they need hearing peers who understand and accept them as deaf young people.
I worry that the perception of this technology and its amazing capabilities may disguise the need for everything else which ultimately are still key components of how a person perceives themselves as fitting in within the world around them, and that other deaf children, young people and adults will miss out on being part of such a culturally rich group.
Tamsin Coates trained and worked as a Speech and Language Therapist for over 10 years. Her training came in useful when she had two sons who are profoundly deaf. She now juggles being a mum to three lively children, writing (she has new book A Changing Skyline out now and you can buy her first book Meanwhile I Keep Dancing here), co-ordinating Teen Team events for the Wirral Deaf Children’s Society and raising awareness regarding deaf issues wherever she can.
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CurlyGirly
April 15, 2014
Fantastic article, well said!
Karlina
April 15, 2014
Like Like Like !!! Once again someone on this Blog speaks from my heart. This article, the blog – its inspiring.
Kate Ballard-king
April 15, 2014
Totally agree with you, I can understand this type of comment from a regular person with little understanding of deafness but that professionals who should be deaf aware can still think this way shocks me and I feel it is part of the reason that deaf support is not of the quality it should be. Yes equipment certainly improves their quality of life but it doesn’t make it complete. Well done for doing such a great article x
Angela Lindsay
April 15, 2014
Well said! I wish all parents, teachers and advisers of Deaf and hearing-impaired children hold similar understanding as you.
donaldo of the wasatch
April 16, 2014
If your hearing is dependent on devices for meaningful hearing – you are deaf. And despite these devices there are situations that I and every other deaf person encounters where it is not perfect and you stumble. So people need to understand when you can function and when you cannot. Your battery dies, your aid goes wacky, static and electronic interference drives FM batty. 80% of the time we thrive but those other 20% or less is when things go nuts and it is up to us to explain to others what is going on. Awesome article!
donaldo of the wasatch
April 16, 2014
Also, there are times when people really think I am not deaf. Before my HA, I was in the 65 to 120 db range of loss. I ended up at a 105 db average threshold loss in both ears before my CI’s. Now there is zero hearing – period. Yet people sometimes think I am not deaf. My speech, for as profound as my hearing loss has been for 63 years, is excellent. So I understand both perspectives. But, I consider myself deaf. And with my CI’s all kinds of things knock those paddles/Rondo’s off my head and then totally mute silence. And when I am doing noisy/dirty stuff with the gardens and landscape – they go off. Then it is totally lip reading for survival, until I can fish them out of my pocket/containers. And to top off the irony I am an extrovert who will pursue a conversation with anyone, anywhere, and anytime. So I was and am a solitary who is an anomaly of an anomaly of an anomaly. No regrets about where my hearing and speech went.
Natalya D
April 16, 2014
I think I was lucky that my mum always insisted that I was recognised as a deaf child because despite my severe deafness my speech was pretty clear to hearing people by school age and this was often used by professionals, teachers, etc to say “oh she’s not that deaf really”. My local authority tried to deny me a statement on this basis which my parents weren’t stupid enough to allow.
When I was diagnosed as deaf, my parents had educated themselves, gone to NDCS conferences, got books so they had a good understanding of what I could hear without my hearing aids (not a lot) and what that meant especially in terms of speech cos I can’t understand the words of shouted speech without hearing aids. This meant if I had no hearing aid they couldn’t communicate with me (signing was very much looked down on in the 1980s in my home town).
My mum was also aware of how much extra work I had to do even with hearing aids to “keep up”, and how much I missed out. I think my mum is quite observant so would notice when I didn’t respond, or more likely, completely misunderstood what was said to me so didn’t “do as I ought” cos I was confused. She was the one who saw me come home from mainstream school exhausted from all the listening and struggling to fit in with my siblings and friends who wanted to watch TV which in the 80s pre-having a TV with subtitles wasn’t accessible to me. No one had told my parents about subtitles or subtitle viewers then.
As an adult it’s very obvious to me that even with hearing aids I am not “hearing”, I don’t behave like a hearing person. I don’t make sense if you don’t know I’m deaf. I don’t like people saying hearing aids magically make me not deaf, cos they don’t.
Lynda
April 18, 2014
This article resonates completely – and in fact it scares me so.
Like those who commented above, I speak well, so much so, that I’m a professional speaker!
I’m about to get to court with my ex over the marital settlement. The major issue, he thinks I’m fudging my profound deafness to receive a higher percentage of the assets. It’s been three years since we divorced – and unfortunately I’ve lost more hearing as I have a degenerative condition and now invalided out of the workforce hence now being self employed.
CI has been pushes to cure my deafness, not by me ENT, but by HIS LEGALS.
I have explained to my legals – CI is just another hearing aid and I’m still deaf!!
donaldo of the wasatch
April 18, 2014
Yep! And as long as the HA’s work effectively they are still a bit more appropriate than CI’s. They absolutely do not cure deafness but I know personally as a user how fantastic trilateral CI’s are. So I would just punch out your former spouse’s legal team! BTW, I do not miss the feedback squeal from the HA’s.
And in a nanosecond you can be silenced anywhere anytime by batteries, equipment failure, etc. The vulnerability is still there. So only in specialized situations are we NOT deaf. Phones are probably dicier than voices. Meetings harder than face to face. TV’s a toss up. I cheat using CC. Sound localization – a deep mystery! There I go spinning 360 degrees trying to figure out where the noise/sound is coming from! Then when the sound is really loud – off goes the CI/HA! And oh, noisy places like restaurants! We get deaf in a hurry. Almost forgot – vehicles and especially airplanes! And then when it’s windy outside and all you hear is a deafening roar! And I am absolutely dastardly terrible at reading the back of the head of an individual. So does that make be deaf?
He and his legal team also provided yourself with another reason to go after him – he obviously did not understand you very well in the marriage, and HE does not now understand your impairment any better now than he did then! Either that or you and your medical team did a terrible job of explaining your condition to him. Either way – this is HARASSMENT. This would be the crux of what I would demonstrate to the court. Obviously he knew somewhat what he was signing up for when he married you. So if nothing else, depraved indifference.
Andrea C
April 24, 2014
Fantastic blog Tamsin. confused emotions right now…… joy that there are people out there who ‘get it’ tinged with sadness and worry for our 8 yr old deaf son as the only deaf child in a mainstream school. though, this blog will be waiting in the Inboxes of the relevant teaching staff at the beginning of summer term next week!!!!
And, thank you Natalya D, it means so much, as a hearing parent, to hear a deaf child’s point of view, though, unfortunately all these years on I am having the same difficulties and battles that your mum had! ……but us mums don’t give up!!!!!
win B
May 1, 2014
I totally agree with everything Tamsin says and the comments. The story makes me think we are returning full cycle to 1880 Milan and the bad days when hearing professionals reckoned they knew better than d/Deaf people what the latter needed and wanted. If we hearing parents can learn at least something from our Deaf children – even though we shall never be able to appreciate fully the differences and the challenges – why is it that some professionals who work and communicate with a huge variety of d/Deaf parents on a daily basis, can presume to take such a patronising and insensitive attitude? Sadly I fear these may also be the people “advising” government – in matters such as Access to Work and interpreter needs, and benefits.