Hi, my name is Katie, I live in Norfolk and I have a profoundly deaf son called Zavier.
Zavier will be six next month and up until this point he has been in mainstream education. What makes Zavier different from many deaf children his age is that he has no amplification and communicates solely via BSL.
After six tiring years of paper work and almost constant battling, myself and my family have decided to uproot our entire lives and move to Doncaster in order to allow Zavier the opportunity to attend a deaf school.
The problem I have found is the way that professionals use measures of attainment when it comes to deaf children.
Although Zavier’s attainment falls bellow the national expected average across the board, professionals are very quick to observe that the criteria used to measure attainment is not suitable in the assessment of deaf children.
They use this as their get out of jail free card, claiming that his attainment is fine despite the statistics which prove otherwise.
Their acknowledgment that the system is flawed is in itself completely maddening for the parents of deaf children, who can see that those in a position to change these unfair systems choose instead to ignore them, and use them to excuse the lack of service offered to aid deaf children.
Furthermore, while they spend all their time bleating on about attainment, they completely ignore the more important issues at hand. In the case of Zavier, those are deaf identity and culture.
These two things are what will potentially shape his future, giving him self confidence and a firm grounding. However, these things are rarely acknowledged.
Last week I attended an EHCP review, with the aim of making an application to Doncaster school for the deaf. At this meeting, Zaviers EHCP coordinator said to me “it is a waste of my time and money to make the application.”
A waste? My sons wellbeing is a waste of her time?! She wanted to pass the buck on to Doncaster County Council and for us to wait to move to make the application.
That potentially could mean Zavier being out of education for months! Or, I could apply for him to board at the school. They were perfectly happy to apply on the basis that Zavier aged just 6 would be boarding hundreds of miles away from his family and at no point during any of this discussion did it occur to anyone that actually…. I have feelings! Zavier has feelings!
I wonder what it would do to is mental health down the line to feel abandoned by his family because he is deaf?
It’s almost as if we are being punished for choosing not to implant him. For choosing to allow him to be who he is. For choosing not to put him through unnecessary surgery putting his life at risk.
The current system appears to me like some perverse game of pass the parcel where a grenade is being passed from service to service, professional to professional and no one wants the music to stop and the grenade to go off which would involve substantial paperwork and funding.
I will finish by saying that it is my firm belief that deafness is a culture to be celebrated not a problem to be fixed. I think society should be given the opportunity to see deafness for the beautiful culture it is rather than being brainwashed into the belief that it is a calamity.
Katie Raworth is 31 years old. She was born in Glasgow but has lived in Norfolk from age 6. She has 3 children, one of whom is Deaf. In the future she aspires to work as a psychologist with deaf children or a psychological journalist in order to raise awareness regarding the psychological impacts of society on deaf people.
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Aled Owen
November 14, 2017
I’m afraid I struggle to understand why anybody would choose to isolate themselves from a significant percentage of their community however that is defined. BSL is a good tool but it has its limitations. Implants are not perfect but they certainly open several doors.
I would like you to develop your argument and explain to us why you think that ‘deafness is a culture to be celebrated and not a problem to be fixed’. I am profoundly deaf and I met a 13 year old recently who told me how pleased she is to have been born in the 21st Century and able to take advantage of the technology available to her. She is profoundly deaf.
Tim
November 14, 2017
“I’m afraid I struggle to understand why anybody would choose to isolate themselves from a significant percentage of their community however that is defined.”
Who said anybody is doing that? You do know it’s possible to be a member of the Deaf community and a member of the hearing world at the same time? Loads of us do it.
“BSL is a good tool but it has its limitations. Implants are not perfect but they certainly open several doors.”
Everything has it’s limitations, so what? And you mean that an implant opens several doors for *you” – important difference. People have the right to make their own choices without unsolicited interference from others.
“I would like you to develop your argument and explain to us why you think that ‘deafness is a culture to be celebrated and not a problem to be fixed’.”
Nobody – nobody, has to explain or justify themselves to you when taking these decisions.
“I am profoundly deaf and I met a 13 year old recently who told me how pleased she is to have been born in the 21st Century and able to take advantage of the technology available to her. She is profoundly deaf.”
And I’m profoundly Deaf and I’ve met a bunch of other profoundly Deaf people who are perfectly happy just the way they are.
Katie, I don’t know know how to fix your problem here but I think you’re a great mother fighting for Zavier. With this smart psychological encouragement, he will do well.
Editor
November 14, 2017
Great comment Tim, thank you.
JT
November 14, 2017
This is a very timely piece given that in Germany a medical professional has just commenced legal action against parents who don’t wish to have their child fitted with cochlear implants. I’m not aware of the risks associated with the surgery but the idea that a third party can overrule parents wishing to protect their child is unpalatable. All the same I’m sure there are quite compelling arguments from both sides. Good luck with your journey Katie, I hope Zavier agrees with your decision when he is old enough to understand the consequences.
Katie Raworth
November 14, 2017
Just consider for a moment that actually, you don’t know me, you don’t know my son. Next, let’s pretend we live in a world where difference is accepted and even celebrated, would there be cochlear implantation? Probably not, because in that ideal world society would adapt to allow integration. This is my point…. Cochlear implantation is just a sophisticated means to medicalize deafness and your response only highlights this. You judge me, for what? For accepting my son exactly how he is and loving him regardless? Should that be considered a negative? No. But the media brainwashes society to believe that medical science offers a cure for deafness, despite deaf people having their own community, language, beliefs, institutions (these are the characteristics which define a CULTURE not a disability). So why should they need a ‘cure’? Should we then expect the black to be bleached?? Is it so different? No. And yet, it’s acceptable to have these expectations of deaf people. 90% of all deaf children are born into hearing families, these people have no experience of deafness and are nudged towards cochlear implantation without being offered a fair insight into the deaf community. I’m talking here about Deaf not deaf, lets not forget, there is a difference. And I will finish by saying, that while I thank you for your opinion, I ask you to consider how you would judge me should I have subjected my perfectly healthy son to elective surgery only for him to die on the operating table? So it is your opinion that his life is worth less than societies bias?? Seriously?
Kim
November 15, 2017
I’m really upset by this thread! Can I just say that I found your view point on the “assessment” of deaf children completely understandable. I have a profoundly deaf son. And I struggle with the assessments that aren’t geared towards deaf children. However and may I just say that I don’t judge your view point with regards to your son or the fact that You have not implanted your son what I find upsetting is your judgment of other parents. My son is proudly deaf. We decided to implant our son. Did we want to “fix” him? No! He doesn’t need fixing,he is perfect in every way! I find it offensive that you think that because we are hearing then we wanted to “fix” him. Our son is deaf with or without his implants on!Was it horrible watching him go through the operation? Yes it was, I won’t lie. Do we sign with him? Yes we do and we won’t stop. Unless he wants us to. I embrace the deaf community and have embraced this new world that we would never have entered if our son wasn’t deaf. Why did we implant then? Well here’s the truth. To give him all the options available to him in our modern world. For us,I didnt want him to grow up and potentially say I wish you had of done it. On the flip side he may get older and decide he hates his implants and not want to wear them,which is also absolutely fine too! Our son is deaf. Our son will always be deaf and we couldn’t be prouder of him. As parents we are forever judging each other instead supporting each other’s personal choices! So please dont insinuate that I don’t accept my son for who he is and don’t judge our choices like I don’t judge yours.
Katie Raworth
November 16, 2017
Kim, I think you have misunderstood me. When talking of judgement I am referring to those people within society who have absolutely no understanding of deafness and then want to belittle my choice not to implant my son. Can I just state categorically as I did in a radio interview yesterday that I am in no way against cochlear implantation and I’m not suggesting that parents shouldn’t implant their children. What I am against is the medical professions use of the term ‘informed consent’ because I fail to see how anyone can be expected to make an informed choice when they are not provided will all the facts. I researched the deaf community myself and meet deaf adults before I made my choice, but this was off my own back, this was never suggested or offered by medical professionals. So in summary, I do not judge you or anyone else for doing what they feel is best for their child. There is already enough division between the hearing and deaf communities without the parents of deaf children being divided too, and this was never my intention. I apologise if that is the way you interpreted my views.
Kim
November 15, 2017
I feel like your very valid point about about the services available for young deaf people are being completely lost here by yourself…….
And I will finish by saying, that while I thank you for your opinion, I ask you to consider how you would judge me should I have subjected my perfectly healthy son to elective surgery only for him to die on the operating table? So it is your opinion that his life is worth less than societies bias?? Seriously
Well you are judging me for doin so and insinuating that that’s how I feel about my own son which quite frankly makes me feel angry and sick! How dare you judge people who have not judged you!
Lyn
November 14, 2017
Katie, Zavier is lucky to have you as his mum and as Tim said, with your encouragement he will do well. In fact, he will succeed in whatever he chooses to do because he knows you have his back. You are equipping him with the commuication skills he needs without resorting to surgery. He can then make his own choices when he’s older and they’ll be his choices and only his. Everyone has their opinion coloured by their own past but by highlighting this topic you’ll be helping many other parents who may feel isolated by their refusal to comply with the ‘medical model’ of deafness but unable to make their voice heard.
DM
November 14, 2017
What an article!! I’m wondering something….does anyone have statistics for children who’ve had a cochlear implant? I’m talking aged 18-21yrs. Are they happy? Successful?? I’ve not seen the statistics, perhaps because they’ve been lost in the mainstream or perhaps they’re not available. And I’m talking about statistics from children who were born deaf and had an implant, not those who were born hearing and became deaf. I think it would make for interesting reading.
Further, why is it that children with a cochlear implant must go to “mainstream” school, why not just any ordinary hearing school? If the cochlear implant was successful there should be no need to be “mainstreamed”. The fact that this is necessary suggests that having a cochlear implant is not ‘curing’ deafness in the way the professionals hoped it might.
I’ve met many parents who have told me that they wished they had learnt to sign with their cochlear implanted child. I’ve yet to meet a parent of a deaf child who’s said “I wish I’d never learnt to sign”!!
Ken Jones
November 14, 2017
Perhaps the Derby School for the Deaf would be more appropriate because they’re bi-lingual – BSL and English, and have several deaf teachers.
kmccready
November 15, 2017
Good on you katie. DM, here are some stats for you in my blog. 1/3 of Deaf kids on a CIP will have “Persistent Language Delay” and therefore will never attain functional language of any sort. These kids are very angry and frustrated and a high proportion will end up outcast and in jail. Aled you might want to consider human rights in relation to your apparent belief that CIP is a “cure”. All humans have the right to a language, not just the 2/3 who do OK with CIP. Unfortunately the response by the Deaf community will be mixed. Many find the CIP “debate” too hard. They’ve lost friends and loved ones because of arguments about it. So they prefer not to talk about it. I contend there is no “debate” and that any “debate” is a product of the CIP industry pushing their product with dodgy “science” in much the same way that there was “debate” about tobacco and climate change. The CIP industry and its academic #SignDeniers actively tell parents that Sign Language is bad and is dying. The science is clear: all Deaf kids should have Sign Language first. And just to be clear, I fully support people who chose CIP but I do not support any attempt to gamble with their child’s language development. That gamble is an abuse of human rights. https://kmccready.wordpress.com/2016/11/29/cochlear-implants-5-big-lies/
Helen
November 15, 2017
This highlights an issue I have .. I’m not anti implant I’m anti choice . A baby has no choice a small child has no choice .. we are who we are -what we are we deserve to be loved and accepted for that. When I started working with Deaf children and young people we were told they could never implant an adult ( reasons for having to implant young) yet I am often hearing now of adults being implanted and not only HOH. Above Aled Owen said about hoping her son would understand why she didn’t well Aled I know a few children who are older now who don’t feel like they belong a
In any camp and are asking Why did you do it….. I to would like to see statistics over the last 20 yrs .. showing all the people Children included, all levels and types of Deafness and the benefits and rejections of the implant ….
Well done mum for allowing your child grow .. and make his own choices … whichever way it goes .. now that takes courage
Ria Gray
November 15, 2017
Katie – you are one AMAZING mother. Fantastic. Don’t let others judge your decision. They are not in your shoes or Zaviers shoes either. I am severely deaf as I have NO hearing at all. I did go for cochlear implant testing but they made me feel well ruthless so I decided not to go any further. I am happier as I am. Why should I change myself for the sake of society bias. Zavier will continue to blossom while he is in right environment you have created for him 😊
Ria Gray
November 15, 2017
Worthless I meant
mjfahey
November 15, 2017
There is nothing worse for a parent than having professionals giving their opinion on your child’s future where their way is the only option, their way is the best option… it’s an horrible situation for any parent to be in…
You don’t mention anything about your experience of deafness though Katie, just your belief in an ideal world where everyone is treated the same. Are others in your family deaf, has your son friends who are deaf, have you the support of the deaf community and or support workers at school?After all believing in a perfect world is great, but we all know that this world is far from ideal.
As a profoundly deaf from birth child who went to mainstream school before attending a deaf boarding school ( deaf school won hands down) and then struggled through a hearing working life where deafness bought discrimination on every corner, would I have had a CI if I could have had one? Yes, in a heartbeat!
But that’s me, who finally had the implant 3 years ago at 56 years old… after all the torment of deafness in an hearing world I now enjoy music, birds singing, my grandchild laughing… I would not be without it. But I have deaf friends who are just as happy living their lives deaf…
Like I say at my age that two hour operation was easy to go through, it was worth it for me, it was no pressure from anyone and my own decision. easy. When it’s your child it’s a different story, but that’s the best time for your child to have it done in order to get the best out of it… that’s why the professionals are pushy, because they know! But at the end of the day it’s you who makes the hardest decision.
I feel for you, and I truly hope things work out for your son, having you as his mother is a brilliant start.
Katie Raworth
November 16, 2017
Myself and all of my family are hearing, as are zaviers dads family. And yes, the deaf community have been very supportive of my decision on the whole. The cochlear implant debate is a very sensitive one to which there is no right answer. I would never presume to judge someone for implanting their child, because I know how hard it has been for zavier because he is not implanted. All I’m asking for here is for the views and opinions of those who chose not to go down the cochlear implant route to have fair and equal recognition. I can understand why the media so heavily covers cochlear implant success stories, but what about those that don’t work? And what about celebrating those deaf people who don’t have an implant? Equality is all I’m after, and anyone who thinks otherwise has never walked a mile in my shoes. Believe me, when you have had others judge you unashamedly for your good intentions, you certainly don’t judge others for their choices.
Richard Squire
November 15, 2017
Same old dilemmas, bureaucracy and emotional turmoil for parents and child.
Being Deaf is not a problem.
Not having ones educational, social and emotional needs met are the real problems.
I’m a retired Teacher of the Deaf who believes in choice and meeting the child’s needs honestly as priority one.
I fought successfully with many others for the reintroduction of ‘Sign Language’, BSL from the 1970s onwards in Yorkshire.
Thus I hope this family win the right to the education their child needs and deserves,
Be strong. Good luck.
JJ
November 15, 2017
The professionals who are supposed to help just push everyone to struggle in mainstream despite knowing full well they will most often achieve more in a school for the deaf. It all comes down to COST. Simple as that. Trust your instincts and go for what you believe for your child. Deaf schools are not necessarily about BSL. It is not about limitation. Most school buildings are simply completely unsuitable for hearing aid wearers and huge class sizes make it worse. Deaf kids are often on their own at school. No one else knows what they are going through. Education is someone’s whole future! Their working potential and chance for independance. We have tried mainstream and failed twice. Now in school for the deaf and flying. Don’t be fobbed off by the bean counters. Well done Katie, your child is fortunate to have such a passionate and caring mother. Best of luck.
kmccready
November 16, 2017
Actually Mike Fahey. The “best” time for starting a CIP is after a first language (Sign) has been firmly established. There’s more and more evidence for this. eg scientists like Mairead MacSweeney, Ruth Campbell
mjfahey
November 16, 2017
Well yes it does make sense in one way… but not to the extent that you miss that golden period where the child is picking up life skills at a strong rate, walking talking reading and speaking…. problem is that’s very young.
Robert Mandara
November 16, 2017
While I respect your right to follow whatever you believe in, I would still like to tell you my perspective. I was born severely deaf and gradually became profoundly deaf. I used hearing aids all of my life through mainstream school. Three years ago, at age 46, I got my first cochlear implant and now I am bilateral (thankfully, I’m not in the UK anymore, where adults only get one implant). Very few things make me jealous or envious but I’m very jealous of the young kids today who have cochlear implants. How different my childhood and life would have been if I had been able to enjoy the gift of hearing that I have now way back then!
If your son had cavities in his teeth or broken bones, would you leave them just as they are to get worse (because that’s just how nature intended) or would you get them fixed? It seems to me that you are scared of implant surgery, which is a normal fear both for patients and parents, but the risks to life are minimal. I have yet to hear of anyone dying during an implant operation, or suffering negative life-changing effects. Even if there is a risk, you’re far more likely to die in an everyday accident. The risks of dying are completely eclipsed by the wonder of being able to hear, hold spoken conversations, use a telephone, enjoy music and have a good job. You do not say whether you are deaf yourself, but I doubt it. If I had a deaf child today who could be helped with cochlear implants, I wouldn’t hesitate to put him or her through the operation. That’s an easy decision for me to make though, because I have seen both sides of the coin.
The big question is, will your son resent your decision not to implant him when he’s older? If I were your child and could have been helped with implants, I’m sure that I would resent you. Whatever you decide, I wish your son all the very best in life.
Katie Raworth
November 16, 2017
Robert, I would like to think that my son will take a minute to consider why I made the decision I did. I have absolutely no need to justify my decision to you, or to anyone else, but I’m going to. I love my son, more than my own life. And yes, the idea of surgery scared me, but that’s not why I chose not to implant him. I don’t believe that it is my right to make this decision for him, his body is his own and he is perfectly healthy. That’s what I can’t get past. He’s healthy, this is not surgery to save his life, and you could argue that it could enhance his life, but I can’t see why he cannot lead a perfectly balanced and happy life just as he is, lots of deaf people do. Also, zavier only has the suggestion if an 8th nerve on one side and none on the other. He also has malformed cochlears and fused bones in his middle ear. We were offered cochlear implant surgery, but it would have been experimental, and my son is not a Guinea pig. Like I said, I should NOT have to justify my decision. I can’t recall ever having seen anyone asking a parent who has implanted their child to justify why they thought any surgical risks were worth it. They made their decision and it was accepted, and rightly so. And as for your teeth analogy….. Having a cavity would eventually lead to an infection which if untreated would lead to septicaemia and eventually death. Not having a cochlear implant is far less likely to result in his death than having one isn’t it! My life would be enhanced if my boobs were smaller, and my backside, so should I then have to surgically alter myself because my genetic have dictated that my body shape does not match up to societies idea of the perfect body? I have no issue whatsoever with you having your views or opinions, and of course, you are at perfect liberty to express them. However, you are not at liberty to presume to tell me what is best for my son, and you make a mockery of all those deaf people out there leading happy lives without a cochlear implant by suggesting that without one they are missing out on something. I mean you could argue that by being a gay man you potentially miss out on fathering a child, but making such a comment would be completely unacceptable and inaccurate as society has adapted to allow gay couples to adopt. So why is it so wrong that i am asking society to be a bit more understanding of deafness and make adaptations for inclusion?
Hazel Carter
November 16, 2017
I don’t want to get into a debate but my son is profoundly deaf and was implanted 10 years ago because he is loosing his sight, he is now 38 you have met him at the signing choir, he wishes he had had the implant many years earlier he says its the best thing he ever had done, he enjoys music talking lots of different sounds.He is very lucky to have learnt English reading and writing he went to a deaf school at age 8 he signs SSE and BSL. None of his school friends have implants but all of them did Sign supported English so all have jobs and all use BSL as well. What you need are both so you can be in both worlds hearing and deaf.
kmccready
November 17, 2017
I’m a bit stunned by some of the comments here which don’t seem to understand the meaning of culture. Can you imagine saying to a Chinese friend or French friend ‘Your culture is not a real thing. Even if it is, it’s second-rate to my English culture’.
Sam
November 18, 2017
I admire Katie for fighting for her son and not pressing something on himm without his consent. I have a son of 8 who is profoundly deaf, he was not born deaf but became so at 3 and a half, he did not choose to have meningitis that caused this and I felt at the time what will be will be. We were offered the oppitunity for cocular implants very quickly and had a 2 week window to decide if this was what we wanted, after that time frame it would not have been possible. Thomas had not been born deaf but very quickly adjusted to lip reading and basic hand signals…this was new for all of us. I choose after alot of consideration and weighing up the pros and cons to have him implanted. This wasnt easy…once he was implanted I encounted abuse from more that 1 person from the deaf community for the desision I had made. This made me question if I had do the right thing for Thomas by potentially excluding him for the hearing world because of the implants and the deaf word because of them too? That was 5 and a half years ago and although yes he encounters people who stare it him on a constant daily basis he is happy, top of his class and popular, other children accept him as he is. during swimming and activities that he cant wear his implants he adjusts and the other children know he needs extra help. Katie, until he is at an age where he can make that choice for himself you as his mother have done what you feel is the best thing for him, that takes guts and courage to do when others scoff at your choice, I admire someone who does not conform becasue sociaty says so. Thomas does well with and without his implants and I will never regreat the desision I made. What I will say is that deafness and its culture should not exclude those that choose to have implants, they are still part of that culture.
mjfahey
November 20, 2017
Well said Sam, my sentiments exactly!