I’ve written about this before… the choice of words medical professionals use when discussing deafness and the impact it has on those who are already deaf.
Yet it seems to be a recurring theme for me lately, with inappropriate comments becoming increasingly prevalent. So my time discussing this topic is not quite over.
A couple of weeks ago I was minding my own business at a soft play centre with my children when a lady approached me. She was a regular there and simply wanted to say hello. She soon realised I was deaf.
To her credit she didn’t scarper but sat down beside me to continue the conversation. But what followed were a string of awkward statements and questions that led me to think there are way too many assumptions about deafness.
She raised her voice and spoke in the direction of my ears, indicating her elderly Father was the same. She said it must be terribly hard for me but at least it wasn’t as bad as being blind (!)
She then asked about my son and when I told her he was hearing she responded overly pleased for me, “oh that’s brilliant!”
I tried to tell her that it wouldn’t matter if he was deaf as having deaf parents and there being such a large deaf community where we live it wouldn’t be seen as a negative thing. But her face drew a blank.
And that’s not the first time this has happened. I often meet new mums at play groups and a lot of the time they seem fascinated by my deafness and desperate to know if my children are the same.
They respond far too positively for my liking if I say they can hear. It’s kind of offensive to me. Would it be quite so bad if they were deaf?
Yet of course deafness would seem like such a catastrophe to them, they’re hearing and have never known anything different. They only see the things we can’t do like, erm, hear!
They don’t see the cultural significance, the language, the community we belong to. They frankly have no idea. And it isn’t a surprise.
Not when audiologists send out letters like this to mums with new babies, urging them to get their hearing assessed to rule out any permanent hearing impairment.
Of course it’s better to know if your child is deaf and to be prepared but the phrasing of that sentence is just doom and gloom.
Rule it out? – like its something to be feared. Impairment? What happens if parents discover their child does have some kind of deafness? They can’t rule it out and their child is now ‘impaired.’ They’ll feel like the worst parents in the world with no positive prospects for their poor deaf child.
This is where my loyalty to my deafness comes in. I refuse to be ashamed of it or see myself as unable to achieve because of it and I feel very protective towards any parent offered apologies or sympathy simply for having a child who is deaf.
So if there are any parents out there who have recently discovered their child has a deafness, I’m speaking to you now.
Your child’s deafness does not summarise your whole child. It’s a quirk they’ll have, a characteristic that shapes them and makes them who they are. You’ll get to know them as they grow and form your own way of communicating whether that’s with speech, sign or both.
It’s your child. Don’t let anyone make you feel bad and most definitely do not accept strangers ‘sympathy.’ If they say sorry – ask them what for? You have a beautiful child whose senses are going to be marvellously heightened, they will have a unique way of seeing the world and most definitely will not be excluded from it.
There will be challenges – that’s life. But take it from me, deafness is not the end of the world. They will still live, love, laugh and its up to you to show them that it’s okay to be different, it’s okay to stand out. Everything happens for a reason. So give it time and you’ll discover yours.
I know that without my deafness I wouldn’t be half as resilient or determined and I would never have achieved all of the things I have. I wouldn’t be quite so open minded or accepting of people’s differences or disabilities because I know first hand that behind appearances we are all the same.
Audiologists, professionals or just general hearing people haven’t had the life experience with deafness that I have. They see it on an audiogram and view it as an impairment, something we’ve lost. Yet I and the deaf community refuse to dwell on what we don’t have and instead we celebrate what we do.
This is what separates the medical model from the cultural model of deafness. It’s all about perspective. We could sit around saying its hard and see ourselves asimpaired and therefore unable to do anything worthwhile with our life. Or we can grab life by the horns, accept our deafness and the unique view it gives us and just enjoy our days.
We are all different in one way or another. And we don’t need anyone trying to make us feel less than or as though we’re a sufferer. Life deals you a hand and you deal with it.
So if people speak of deafness as a terrible, terrible thing, I say let them. If they panic at the prospect of your child being deaf and try helplessly to “correct it” I say leave them be.
I refuse to waste any more energy assuring people that actually being deaf isn’t quite so bad. That it doesn’t mean I have “bad ears” or “less than satisfactory hearing. ” Or that I’m a bad or less than satisfactory person.
Instead, I’m just going to show them. After all it’s true that actions speak louder than words. They will see as I live my life that I’m here and I’m deaf and its okay.
Rebecca-Anne Withey is an actress, sign singer and tutor of performing arts. A black country girl at heart, she now resides in Derby where she works in both performance art and holistic therapies. She writes on varied topics close to her heart in the hope that they may serve to inspire others.
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denissmith2
August 10, 2015
Rebekah you say ‘I know that without my deafness I wouldn’t be half as resilient or determined and I would never have achieved all of the things I have. I wouldn’t be quite so open minded or accepting of people’s differences or disabilities because I know first hand that behind appearances we are all the same’ but perhaps you’re not as open minded as you think. These adverse comments are said with the best of intentions but from a position of ignorance. They do not intend to be offensive. It is our job to be tolerant but resilient and help them to understand the situation. Without that dialogue we won’t teach people to understand the reality.
mjfahey
August 10, 2015
While I agree with every word you say Rebekah, I feel you are glossing over the fact that life as a deaf child can be, and is, much harder than life as an hearing child. You speak as an adult with life experiences behind you, life experiences which make you who you are, which make you tougher and more able to face the inequality of living in a hearing world. If that child is introduced to deaf culture from birth, (with family deafness involved for instance) yes there is a natural, smooth rightness which can instigate a confidence and sense of belonging with others who are deaf. Support can fall naturally into place and the child can identify with others in his/her life. If however a parent is unaware tha a new born child is deaf, immediately the child is at a disadvantage, missing out on many things that normally are taken for granted, and, if not diagnosed with hearing problems can continue to miss things which would improve his/her life and even protect their life in the case of road safety for example.If that parent is aware of a problem they can spend their lives trying to convince the medical /educational / employment professionals that it is so, that their child requires additional support….and never get that support (and in these days of austerity, with government cuts etc. making it even harder.) So yes I do agree in your positivity and it is good to reassure parents that deafness is not to be feared in the long term, that their child will be okay and will manage to live a fulfilled life and be happy…. but that first hearing test, yes, it is desperately important, especially to the parent who has no experience of deafness and how important it is to get that support network in place for their child.
From an adult who, as a child, once missed meeting Father Christmas because he didn’t hear his name being called…. I am still traumatised to this day! 🙂
Carrie
August 10, 2015
Yeah, I agree! If you grow up with the language and culture it is a beautiful thing. You will miss out on things – naturally – but everyone does one way or another… That is not exclusive to our deafness/hearing impairment.
However, if you – like me – grow up as a hard-of-hearing person in a hearing world without ANY contact with the culture and/or language whatsoever, you do feel like something is wrong with you and it makes life a lot harder. I always went to hearing schools and I always managed but solely because I well… I bloody had to haha 🙂
Being deaf or hard-of-hearing is not all that bad. It doesn’t make you less of a person, it doesn’t mean you can achieve less than hearing people but the environment you grew up in does shape you and might change if you perceive this quirk of yours as an impairment or not.
Informing parents – and people in general – is crucially important! Not just inform as in “Oh, yeah, by the way, there is something wrong with your child.” No, inform as in introduce them to the beautiful and rich culture that comes with this quirk.
But, Rebecca-Anne, you’ve put it beautifully! Very recognizable
🙂 Cheers!
Cadiche
August 10, 2015
I agree with every word Rebecca-Anne and will be re-blogging your thoughts. It is frustrating as all get-up when hearing people see Deafness as a bad thiing. It is equally unfortunate that hearing people are put in charge of things regarding Deafies. They then come out with things like “I understand how you feel,” when they have no clue whatsoever.
My blog is all about Deafness and the stigma and discrimination that comes with it, including the selfish barbaric parents that are so determined for their “poor Deaf child” to be like them that they would rather have their child’s head ripped open, risking brain damage and meningitis, so they can “maybe” hear something some day, rather than learning sign language and adjusting themselves to fit into the child’s world.
I look at these comments and want to head-butt some of them through the screen. My latest book specifies the nonsense we Deafies have to go through on a daily basis, as well as naming and shaming those who have put up walls so that we have no rights.
Thank you for blogging it as it is xx
pennybsl
August 10, 2015
There are many of us in those journeys.
My experience was during pre-Internet, pre-See Hear and pre-BSL lingustical times, pre-Ceefax subtitles, etc..
I had tried to fit in the hearing world after leaving a Deaf school, contrary to teachers’ expectations, it was a solitary path for years. Felt very incomplete and hollow at times.
I did my 1975-6 Degree thesis on my own deafness from three angles; being Deaf, being an Deaf artist and being Deaf with faith. Never used reference books etc at all. I only had Breakthrough Trust’s excellent 1970s booklet….couldn’t remember the title…something like ‘Now I see it all’.
Remember……….! This was during pre-Internet, pre-See Hear and pre-BSL lingustical times, pre-Ceefax subtitles, etc..
With an open and enquiring mind during my non-accessible Art Degree years in Farnham during the 1970s, I discovered the Deaf World first through a London Deaf Christian community (Deaf Christian Fellowship), then the Deaf Community with Deaf Culture and Sign Language.
All kinds of d/Deaf people, all kinds of backgrounds and experiences.
When the thesis was done, I experienced the ‘glow’ – exactly as the concept ‘FOUND’ as depicted in BSL Zone lately – of “that is what I am, Deaf, full stop, I’m OK with it”.
I was very Oral and SSE at the time, but what mattered more was the inner “OK I’m Deaf” person I still am.
At that time I did not realise my thesis’ connection to the significance of Deaf Identity till 15+ years later, when Deaf Consciousness (Jeff McWhinney) cropped up during the first decade of British Sign Language as a taught language subject.
My parents, who supported me quietly in letting me find my way during adulthood, read the thesis. My mother said she had wished she learned fingerspelling to help with lipreading etc …..I was certainly no easy child in my formative years.
We need more testimonies of many d/Deaf people to be instilled in literature, promotion of wellbeing, role-model resources and seeing more Deaf adults in the frontline of services with all children, deaf and hearing, in order to break down assumption and ignorance within all stratas of society.
TMum
August 11, 2015
I am a hearing parent with a 2 year old with a moderate to severe hearing loss. She is an amazing little girl, determined, confident and has a positive attitude to the hearing aids she’s worn since she was 4 weeks old. I have a question and would love some feedback on signing and deaf community.
I would love to give my daughter all the opportunities possible and as I hear more about deaf community from all kinds of sources, from Gratson Perry in TV to blogs such as these. I think should I be learning BSL now so I can teach my daughter or should I wait and give her the choice on how she wants to communicate and support her then? We do a little Makaton at the moment but she mainly just uses speech (well, as much as a 2 year old does).
I have joined a local deaf childrens society as I would like her to have friends who also have a hearing loss but haven’t yet managed to form bonds in the group but I guess this will take time.
My main question is what is your advice to me to be the best parent I can be?
Cadiche
August 11, 2015
In my own opinion, to become a fantastic mother to your child (whether hearing or Deaf), both of you should learn Baby Sign Language (British, if you are a Brit) from as early as possible. There is no such thing as too young. Babies and children learn by seeing and copying.
Become a part of your child’s world. She will love and respect you for it as she grows older, especially as you learn to sign with her.
I am 44 years old, and was asked only three days ago by my father “So how can you speak if you are Deaf?” My parents never learned sign language, nor has any of the rest of my family. My husband, however, has learned sign (ASL) with me and it is our method of communication.
Time, patience and dedication will see you both through it. xx
Tim
August 12, 2015
I totally agree with Cadiche’s comment here. As a lifelong Deaf person, what was missing was Baby Sign and BSL.
Ignore those knows-it-alls who falsely claim that sign language interferes with spoken English – it doesn’t.
Hartmut
August 15, 2015
TMum,
Just learn BSL (in the UK) or ASL (in North America). Don’t limit to Baby Signs. And have a deaf signers come to your house often to communicate with the deaf child. Or go to gatherings involving signers.
mjfahey
August 11, 2015
I have a profound loss of hearing in both ears, and have been like that from birth. My mother fought for everything she could to make my life better. Sometimes she got things right and sometimes things did not work out… but she fought hand tooth and nail against officials from every department under the sun…and this was in the 1960’s before the event of google.
People will give you lots of advice ‘re oral speech, BSL etc.
My advice is simple… go with your heart, you are your little girls mother, only you will know what is best for your daughter and maybe you won’t get everything right… but you will do everything in your power to do so…and…you have your love….and google to back you up! 🙂
deaflinguist
August 12, 2015
I don’t want to start an argument on this article, but I do think attitudes from some d/Deaf people do need to be challenged occasionally. I fully support Rebecca-Anne’s article and PennyBSL in her comments, but Cadiche’s language gives me pause for thought.
I feel language such as “ripping open” a child’s head and “risking brain damage and meningitis” is emotive and unhelpful. In cochlear implantation the skull is not “ripped open”, indeed the surgery is behind the ear with a tiny scar these days, the cochlear is drilled into and a bed for the implant made on the skull, no brain surgery is involved whatsoever (the implant has no connection to the brain, although the brain, as with ANY method of hearing, including hearing with HAs and natural hearing, does the processing work) and meningitis vaccination is required prior to implantation in most countries. There is a risk of meningitis with any surgery in or on the head area, not just CI-specific.
Parents who enter into a CI operation for their children do not do it lightly, and are not bad parents for doing so and should not be guilt-tripped. It is not suitable for all forms of deafness and hospitals will do many non-invasive tests to determine whether a candidate is suitable or not (not just audiology tests).
Most parents realise that it is a difficult decision and will research the subject carefully and ask to meet other deaf children with and without CIs. CIs are usually chosen in tandem with the realisation that language support is crucial and it doesn’t mean that sign language is discounted automatically as the educational and/or home language.
It is also irresponsible to make people think that their deaf child may be a second-class citizen in the eyes of d/Deaf peers for having a CI and may in fact reinforce the impression that it is a choice CI or SL, rather than both, if parents fear that implantation may preclude acceptance from deaf peers and role models. Penny’s point about role models is absolutely spot-on.
The main thing is to love and support any deaf child in the best way possible and that includes language support at home and school to help the child develop their talents and self-esteem with or without CIs or HAs, listen to the child if they feel something is wrong or is not working for them in terms of aids and education, and give them life skills to brush off and challenge pitying attitudes – all of which are crucial at home and school.
Cadiche
August 12, 2015
It is actually not emotive and inflammatory at all. You will never hear doctors and Audiologists tell you anything except what THEY what you to hear. Painting it through rose coloured glasses is only something that a parent who has forced their child through it rather than them fit into a child’s Deaf world, or something that an Audiologist would do.
There is absolutely no shame in being Deaf. It is not a disability. We speak a different language, just as many people do throughout the world, but forcing doctors to make a decision because a parent is too scared to live in a Deaf world WITH their child is shocking and a tremendous shame. People who force CI’s on their children are missing out on a whole amazing world.
Rather than making a choice to risk your child’s health, why not let them decide what they want to do when they are 18? Are some parents really that scared of Deafness that they believe it labels their child as a freak? Do those parents still agree with governments of 30 years ago that if you are born Deaf, you should be forcibly sterilised so you cannot procreate, thus making an even freakier freak of nature?
Us Deafies are pretty non-scary if you bothered to take the time to find out. Let a child who is born Deaf BE Deaf, and LIVE Deaf, learning a whole set of skills that hearing children will unfortunately never know about. But do not label me as emotive. Label me as realistic.
For the record, HAs are nothing to be afraid of either, and have nothing whatsoever in common with CIs. A HA actually HELPS the HOH to hear without invasive and dangerous surgery that puts a person 30 times at risk of meningitis in their lifetime that a HA does. HA enhances the abilities that HOH have. CIs strip a child of a future made of choice.
deaflinguist
August 14, 2015
When you say ‘Us Deafies aren’t anything to be scared of’, of course not. I’m not a hearing parent of a deaf child. My username may perhaps drop a hint that I might be a Deafie too, having mixed in the deaf community continuously since childhood, and I’m a BSL user to boot. I’m not a lesser Deafie for having a CI either.
Thus I know that there are quite a few children and young people who are both CI recipients and BSL users, which I think demonstrates that they have choice and are supported at both home and school.
Rebecca-Anne’s article was about medical professionals and others ‘minding their language’ and not implying broken-ness about children and young people who are deaf. I agree wholeheartedly with this and have challenged the notion I might somehow be ‘lesser’ or ‘broken’ since my own childhood. I do think that life skills to brush off, and be assertive in the face of, such attitudes are crucial for deaf and HOH children and adults.
However, I also happen to think that ‘minding your language’ applies to Deafies too. The way you have expressed your views does appear to imply that you consider children with CIs to be broken in a different way. I consider this to be equally challengeable.
Cadiche
August 14, 2015
Children with CIs are not broken. Hearing parents who force their children to have CIs are broken. Therein lies the difference in what I have said.
When a parent forces their child to undergo an operation which is unnecessary to save that child’s life, the parents need to evaluate themselves. I am comfortable with who I am, CI or not. If you are a parent who has taken away a child’s choice by forcing a CI into their head with the help of a surgeon, knowing that child will not lose their life if they do not have the surgery, you are indeed a broken parent. The child who undergoes the surgery will never be broken. They will simply be the ones with broken parents who took away their choice.
Due to the twisting of my words, and one person even quoting my words that a child’s skull is ripped open (never have I spoken of a child’s skull), I won’t be following up any further comments or insults. If hearing parents with guilty consciences want to attack… be my guest. I will be elsewhere, living proudly as a Deafie (which, by the way, is not an offensive term – just in case you all want to call me something else inventive).
Good day to you all, even the broken parents out there.
Hartmut
August 15, 2015
In my lectures on the topic of audism in Germany, I posed a scenario for discussion and evaluation of the audism behind it: A Deaf mother just got her first baby. A neighbor asked her, if the baby was deaf. The question is of course innocent, but still loaded as Ms Whitney points out in the article, more so in Germany than in the U.S. due to her Nazi past. The German Deaf mother gave a brilliant retort, “The baby is healthy”.
The root of audism lies in the cluster of conceptions that it is “healthy” not to be deaf, deaf people have lower quality of life by virtue of inability to hear, the whole mankind is to constitute of hearing people only, etc. It is shown simply, when a hearing person shouts to a deaf person and receives no response, and then screamed, “Hey, aren’t you deaf?”, then is completely set back that the person is actually deaf.
Hearing people need to learn from us the benefits of having Deaf people around. Mankind is only whole if deaf people exist. Parents with deaf children are truly blessed, having them. They are chosen!
“I am deaf, but not my ears”
Hartmut
August 15, 2015
The audistic vocabulary that the medical profession introduced, which we should avoid:
hearing impaired, hearing disability, defect of hearing, partially hearing, etc.
mute (in the sense of inability to speak with voice)
hearing loss (we never lost it or don’t look for hearing)
hearing rehabilitation (why should we be?)
language = speech = English/German/any other spoken language, as used for example: language development = development of competency in English or a spoken language
verbal = spoken, uttered orally, with manual signs relegated to “non-verbal” (sign language is also verbal)
normal = hearing
mute can also apply to momentary inability to sign
the verbs speak, talk, say, shout, etc. do not need to be restricted to the use of mouth
The verb hear also not restricted auditorially
Using the terms “Inability to hear”, “cannot hear” or similarly are OK. I always say, “I don’t hear” to a hearing person who approaches me for the first time. With this, I just convey subtly that I am like those species, like snake, sea horse, who simply don’t hear.