Rita Simons and her husband Theo have twin daughters, who are five years old. One of them, Maiya, was born moderately deaf and has progressively lost more of her hearing since she was born.
This documentary, which is the latest instalment in the BBC’s Beyond Disability season, follows them as they explore the different options open to Maiya – from the possibility of attending a deaf primary school, to learning sign language, to potentially having a cochlear implant.
Rita tells us that Maiya is missing “nerve endings and parts of her cochlear that mean you can’t hear,” and how her speech is “lazy” with her hearing aids out.
She seems like a typical child though, with a hint of mischief which we see in the bath, when, as Rita says “Mummy” to see whether she can hear and repeat what she’s saying, Maiya answers “bum” instead.
The big fear for Rita and Theo is that she will lose more of her hearing. Maiya has been born with a widened vestibular aqueduct, “a deformity in her inner ear which causes hearing loss.” They have been told that a bang on the head could cause her to lose her hearing completely, and later, when she does bang her head, we see Rita anxiously trying to check whether Maiya can still hear her.
The first stop on their exploration of the routes Maiya could take is the visit of a sign language teacher. The whole family seem to embrace learning some basic signs – except for Maiya, who seems overawed and walks out. I hoped that wouldn’t be her last chance to learn.
Rita then meets a mother of a deaf child, who has embraced the deaf community and sign language for her daughter. She points out just from watching a video on Rita’s phone a moment where Maiya hides the fact that she hasn’t understood something, and emphasises the importance of deaf role models, something Maiya doesn’t have.
When Rita visits a primary school for deaf children, she meets pupils who perform on stage, are lively and engaging, and learn in an environment where they feel equal to their peers. When she sees how many of them wear cochlear implants, she begins to find out more, meeting a boy called Jack who later undergoes a CI operation.
This sends the film on a different course as it investigates cochlear implants. We hear what an implant sounds like and see Jack’s implant being turned on. As well as being given the positives, we find out the risks of the operation and who they are and aren’t suitable for.
There was a moment that made me cringe when a doctor said that with a cochlear implant, a deaf person who previously wouldn’t hear a chainsaw going off next to them, could go on to speak to a stranger on the phone. While I’m sure that’s true in some cases, this seemed like an oversimplification of the outlook for many deaf patients that could give a lot of people watching at home the impression that an implant is a ‘magic bullet.’
We were then told via voiceover that “cochlear implants are controversial,” and how deaf people would see Maiya having the operation as being “a rejection of their culture and language, BSL.”
Rita then visited a pub where she met some deaf people, then was told by one of them that giving your child a cochlear implant equates to child abuse. You could almost see her recoil from the deaf community there and then.
This was a disappointing moment for me. It felt extreme and I didn’t feel that the deaf people in the pub reflected the range of views within the deaf community, particularly as implants have become more prevalent among deaf children and an increasing number of deaf adults.
At the end of the film, we found out that Rita and Theo have decided that Maiya will have a cochlear implant later on in her childhood, when the level of sound she gets from her hearing aids is reduced.
In my view, the documentary was an interesting and eye-opening look at how some hearing parents of deaf children approach deafness and the routes they can take. I didn’t agree with all of Rita and Theo’s views, but I could understand how they wanted their daughter to fit in with their own lives and the life she was living at that point, using the hearing she had.
I did feel, however, like there were some major gaps in the film’s exploration of the options open to Maiya. I’d have loved to have seen her meet a deaf role model to see how she’d have related to them. It also would have been great for her to have the chance to meet other deaf children (such as those in the primary school) for an extended period of time.
The film focused more on the journey of her parents and along the way, I felt that Maiya missed several opportunities to reach out and connect with the deaf world.
For the next week, you can see the programme online via BBC iPlayer here: http://www.bbc.co.uk/iplayer/episode/b01dwf9z/sign/Rita_Simons_My_Daughter_Deafness_and_Me/
This review by Charlie Swinbourne was commissioned by Disability Arts Online and is reproduced here by kind permission. To view this article on DAO’s website, click here.
Further reviews and blogs on the programme:
The Independent
The Guardian
NDCS response
Ni Gallant: Rita Simons… her personal journey to make her daughter hearing
What did you think of the programme? Leave your comments below.
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Cain
March 21, 2012
I agree. At last a programme that sensibly raises some of the drawbacks of mainstream education, and the fact that parents are often “too close to the woods to see the trees” when it comes to recognising their children’s struggles. A very real issue in today’s world with the diminishing numbers of ToDs, closure of deaf schools, struggles with funding, etc- however I fear that this will be drowned out by the ‘Cochlear Debate’.
Lidia
March 21, 2012
I agree with Rita and her husband views. Their daughter is not fitting in their lives, she is simply part of their lives. She enjoys ballet, music etc. Their worry is , how the child will feel the moment she lose that, and that is the most important in this film. As to Deaf woman comment, I agree best leave unsaid!
Elaine
March 21, 2012
Good programme but oh dear, yet again not one Deaf oralist has the opportunity to appear on TV when Rita went to the pub, she met Deaf people who are all pro BSL & anti cochlear implants. We need both sides aired on the programme.
Oh Dear
March 21, 2012
Oh dear…..another programme about deafness and the ‘cochlear debate’ rears it’s ugly head once again……free promotion for the cochlear implants manufacturers….just like ‘Deaf Teenagers’.
The programme shows Rita meeting a group of deaf people….with an interpreter….oh dear…..those deaf people were an embarrassment….one actually said ‘I’m concern about BSL dying out and the numbers of deaf people will be reduced’….for feck sake…..another goes on about child abuse…..Rita looked mortified.
But Rita like many hearing parents do need to adapt and change and not expect the child to do all the adapting and changing….comments like ‘you speak well’ was cringing and shows her preference and snobbish attitude to BSL users……she needs to keep those thoughts in her head.
Finally at the end, ‘Regardless what anyone from the deaf community says….’…..arrrrggghhhhh….oh dear……so in her mind the deaf community is like the ones she met in the pub.
Tina
March 21, 2012
I’m with Elaine on this. They could have brought in deaf role models who can lipread. Deafness isn’t just about BSL and cochlear implants.
gargly
March 21, 2012
Few comments made… but “BSL being old fashioned”??? come on!…
buryana
March 21, 2012
It’s very difficult situation for Rita and Theo, having never had any contact with deaf people before, to try and do their best for Maiya in such a sensitive time of their lives. The programme highlights many issues regarding BSL and Cochlear Implant and I could understand their dilemma and frustration. One incident came to mind – when Theo heard the sounds that CI transmits and he was clearly horrified of the difference when compared to real music.
I was not impressed with “keeping alive the Deaf community” woman as that clearly has no interest for Rita and has nothing to do with her daughter at all, and to be told that was she was doing was abusive lacks sensitivity for Rita’s dilemma.
I agree with Elaine that they should have brought in deaf oral role models and their successes in both their working and social lives.
Rita and Theo have taken the right steps in waiting until their daughter is old enough; they have to let Maiya have the choice as she will be the one wearing the CI. They also have to be extremely aware that once the operation is done there will be no hearing left and that the risk factor is there.
I wish them all the very best in what ever they decide to do and hope they are 100% clear that they are doing it for Maiya and not for their own insecurities.
Mike
March 21, 2012
Oh come off it, I think there’s enough of a supportive approach toward Oralism, by the endless promotion of cochlear implants in EVERY programme linked to Deafness now.
Jill
March 21, 2012
What a lovely and bright little girl. Her mum and dad did their best to find out what the way forward for her could be. Good luck to them. It’s just a shame the film wasn’t a little bit more balanced.
sandrap
March 21, 2012
I’m wondering how confused Maiya would be to hurt her head yet her mother fusses over “Can you hear me now? Now? NOW?” and going for yet another hearing test.
Of course to complete lose the ability to hear is the parents’ idea of a worst nightmare- but not to raise, what seems to be a, very real possibility with the child herself is silly. Really whatever reaction Maiya has towards being Deaf is largely going to be influenced by her parents’ attitudes- to say that she would be “devastated” not only puts words into her mouth, but actually sets a negative outlook for her future.
(Of course signing is going to seem pretty pointless for a girl being raised as ‘hearing’- as the programme points out parents raise their children alike to themselves, evident by the girls after-school musical/drama sessions matching the mother’s own interests in performance.)
Liz
March 21, 2012
I found this programme incredibly negative – both with regards to oralism and the mother’s attitudes towards deafness. I also found the overly negative views of the Deaf people she met in the pub fairly cringeworthy, in that yes, cochlear implants are not a quick fix, they are not the perfect solution, they are not for everybody but I would draw a line somewhere – they are definitely not ‘abuse’. And BSL is not old fashioned! I just thought this programme was a mess. It was the same cliched two sided approach to an argument that puts BSL on one side and cochlear implants on the other. What about people who sign and have cochlear implants? Don’t they count? (I know a few people who sign and have implants) Or what about someone like myself, someone who was brought up with massive support from my parents, HIUs, from a largely oral background, who has only recently learnt Stage 2 BSL?
I have always loved to read and write, but I love sign language too. Then the thing that stuck with me is that Maiya loves to perform and dance and sing, but so do deaf people! My upbringing involved being in productions at Chickenshed theatre from age 7-18 and I loved it – I got to dance and act and sign-sing on stage. I love music, even though I hear it very differently to how hearing people do (and can’t hear at all without my aids). So I felt that this programme did a massive disservice to the experiences of oral deaf people as well as deaf people heavily involved in the deaf community.
It just didn’t get across the fact that every deaf child has different needs. Nobody has the same experience, even if we are part of the same culture or have been through similar things. I felt that even though it was early on and Rita still has a lot to go through with Maiya, this programmed has completely skewed the issue for her by not introducing her to deaf people with more nuanced or balanced views, or not introducing her to other deaf role models. How can she know that her daughter can achieve whatever she wants to achieve if she thinks that success hinges on hearing? It just feels like nobody explained to her about places like the NDCS or that there are people who can help and who understand.
Ted
March 22, 2012
Hi Charlie an interesting comment that was posted on The End’s facebook page about the programme:
I think that the comment “abuse” was not well thought out and there were no valid reasons behind being against CI’s. It is a shame that Rita and her husband were not given a wholesome view of the lives of deaf people. Several comments irritated me ‘deaf people cannot read and write as well as their neighbour’ which I believe is generally untrue. With the support of their parents and good schooling, like any “normal” child, would fair very very well in terms of their English and consequently their intelligence. Also ‘ put a deaf person next to another with a chainsaw, they would not hear the chainsaw but a child with an implant would be able to hear strangers on the phone’ utter utter rubbish and gives false hopes. I am against the implanting of CI’s on small children not because it ‘”contributes to the decline of the deaf community” nor because “it is abuse” but because of the risk involved – these risk: facial nerve damage, brain damage, increase risk of meningitis, prolonged diagnosis of other problems needing CT or MRI scans. Whether these risk are large or small I have no idea it is not well documented but like most researchers who favour a particular result they will no doubt ‘hide’ such findings and publish the ‘positive’ results. However, be the risk small I still could not find it in myself to agree with implantation – a small risk is too great. Granted all forms of surgery come with a risk but consider this – some forms of surgery are essential to life whereas surgery to… potentially… increase ones hearing ability is not essential.
(back to me now)
I was very upset with a number of things, that were listed in the comment above, about the programme. However I was sadly not surprised.
There are many deaf filmmakers out there who would be able to produce a much more balanced programme/film on the subject(s), including myself but unfortunately broadcasters like the BBC seem to give the opportunities to people who have very little understanding of the subject.
Perhaps they’d argue that the hearing director comes from the same perspective as the majority of the audience… but for me, it is unfair because we have so much to say and so much to give… and in the process we would not be misleading in anyway.
Hopefully things will improve in the future.
Mel Pink
March 22, 2012
Im pleased for Rita whom has made it clear publicly of her views as regards with her daughter Maia.. If hearing can be protected and restored ,then that is fantastic thing !!! , parents know their own children best…its not for other people to be commenting on.Those three deaf people are not exactly role models !!! Good luck to Rita and her family for all in the future 🙂
John Walker
March 22, 2012
Would you mind if I write something controversial? Everyone is talking about ‘abuse’ but no one, even at Rita’s request, has explained.
I was just looking up the word for ‘abuse’ and trying to understand what it means irrespective of the context. Dictionary said:
“Abuse is the improper usage or treatment for a bad purpose, often to unfairly or improperly gain benefit.”
I am not specifying ‘sexual, physical or emotional’ abuse because the contributor in the pub didn’t specify either; she simply used the term “abuse”.
Now, Rita is a mother of two children, an actress, and a celebrity. Her time is precious and her time with the family is paramount. The idea of collaborating with a third group, such as the Deaf community is a divergence from her time with the family. Instead of focusing on her husband, children and career, she has to find time to learn sign language, go to the Deaf pub and celebrate Deaf culture. It must be prohibitive and mind boggling. Of course, Rita said “we haven’t embraced the Deaf community”; what must one do to embrace an ‘alien’ way of life? It is a huge undertaking.
So, Rita has made a decision. She is not prepared to change for her daughter, so her daughter will need to change for her family. It is her right as a parent to facilitate this change. The specialists, doctors, audiologists all say the same: if she goes for the cochlear implant, she is a good parent. She has her defences ready: “Deaf community is old fashioned”, “You come from a Deaf family, we are hearing parents of a deaf child”, and so on. She is fighting, like a tigress with her cubs, for her family as she sees it. A cochlear implant is a relatively short operation with some years of rehabilitation, using the skills she already has.
Is this an improper use of the cochlear implant in order to change Maiya into a hearing, or near-hearing child, to fit with the life of her family? Is it fair? Who truly benefits in this situation: Maiya or Rita or the family? Can this be called abuse? I do have difficulty seeing Rita as a malicious person with abusive aims but I do see Rita as an overzealous mother with aims for her child, whether Maiya likes it or not. It is fair to state that Rita’s actions are improper and inconsiderate of what is best for Maiya, as it is described in the programme.
Ellen Burgess
March 23, 2012
Prior to watching My Daughter, Deafness and Me, I am nineteen years of age and have a hearing loss that deteriorated until the age of 11 and watching your programme it was almost like watching myself as a child. My parents went through exactly the same processes and decisions, as you are going through at present.
My parents took me for tests for a cochlea implant and decided against it, for me personally it was the best decision as my hearing has since stabilised and I cope so well with my hearing aids, it sometimes a struggle and sometimes frustrating but I have all hearing friends who are so understanding, a lovely boyfriend who is supportive and I have a fantastic social life.
I have always attended schools that have a hearing impaired unit, I dropped one subject at school (French) to go over other important subjects with other deaf students to make sure we were getting a full understanding and hadn’t missed any important pieces of information. During my time at school I was interested in sign language and picked up some BSL just from being around the other deaf students but in my spare time I was always with hearing students and have currently no other deaf friends.
I also believe that the worry of joining the deaf community should be down to your daughter when she is old enough to have full understanding of her situation and will make the decision for herself, like me I chose not too but whilst being at a school with both deaf and hearing people I had the best of both worlds.
I don’t usually do things like this but watching the programme really touched me and made me realise what my parents were going through all those years ago, I hope this helps you to make those important decisions.
Tali
March 25, 2012
Sorry it has been a bit late to make a comment – I only just watched the program on BBC iplayer!
In my opinion, that program completely lacks information in certain areas. It doesn’t say how bad her hearing can possibly get to? Will she become profound or completely deaf?
I myself have been orally profoundly deaf since birth – and don’t have a cochlear implant. There was no examples of profoundly deaf adults on the TV program who been brought up orally. Disappointing.
Rachel
March 26, 2012
I am a Deaf mother of a Deaf boy and aHearing boy, a professional who works with Deaf children, a thinker, a talker but not a writer! so will make points of my view rather than writing….
I recorded the programme and managed to watch it later in the week, it was interesting watching it. My view is bit belated.
I do respect Rita for going into this with an open mind and looking at options though I felt that BBC didn’t seek for right advice before filming, I will make some points on my thoughts rather than writting….
– The girls look happy and full of life which is lovely to see though I felt sorry for them, sitting on the sofa in front of a lady they had never met, speaking aliens with hands! Especially for Maiya as I am sure that she is aware that she is different from her family but doesn’t understand, especially with losing her hearing, wearing hearing aids, going to audiology appointments as her twin sister doesnt have to go through this. The best way for children to understand, to learn sign language and/or developing self identities is through play. It would’ve been great if they had one Deaf professional ‘playing’ with children while the teacher teaches the parents.
– It would be a nice balance if the parents met a hearing family who learnt sign language with their Deaf child. It would be even better, to have a 3rd family, a Deaf family with a Deaf child so people could see the differences.
-It would be ideal for the family to meet professionals in Deaf fields (maybe at universities as they have researchers or with NDCS), they would ensure that the parents receive balanced advice on CI, sign language and identities.
– I wish they had picked a variety of Deaf people from different areas rather than a group of friends who obviously share same view. They need to get their heads out of the sand and look outside their world! In my experience, Deaf people are more accepting about CI now than before (as long the child knows he/she is still Deaf) and more Deaf adults in the Deaf community are choosing to have CI themselves – we need to open our mind, open our arms to those families, letting them know we’ll respect whatever their decision is and that they are very welcome to the deaf community as their children are our future otherwise it’ll be a mess and more children will grow up lacking self identities, becoming stuck in between the Deaf and Hearing worlds in the future, no matter how well they can hear or speak, which can be mind damaging. I am AFRAID of this for those children.
– From my experience, some professionals who work in CI field do discourage families from using sign language as they think it slows down their listening and speech skills, which is NOT TRUE as it has been researched and proven. I do find this frustrating as children need to be able to relax and communicate freely while not wearing their CIs especially while swimming, at the beach, in the bath, getting dressed and it’s especially useful when a child loses temper and throws the CIs off (this has happened to a family I knew and they said thank god we could sign to him!). It also can be mind damaging if they loses/break the CI receiver and have to wait before they could communicate again, or in the worse case, the CI parts inside the head may need replacing which means waiting for an operation for a replacement and then a recovering period before switching on again, which may take 4 weeks or longer. It is a lot to ask for a child to go through this with little or no communication!
– I say, FOR GODDESS’S SAKE COME ON, we ALL (Deaf community, hearing people, professionals, government, aliens) need to stop debating which is right and to take our head out of sands then move on into 21st century! we need to encourage our children to be bilingual at young age no matter what their hearing levels (you never know if they will lose their hearing like Maiya) and to have heathly mind, strong self identity, make their own choices as adults and after all we do live in bilingual world!
buryana
March 26, 2012
well said Rachel
Rachel
March 26, 2012
Forgot to add that having CI doesn’t take away identities but attitudes does.
nikki
March 26, 2012
u rachel r wonderful as it is same things what i thought! agree abt deaf identities as it is up to us to carry on to give out positives vibes! shame this programme only show negative point of views from deaf people. i wish they could show another deaf people who do not have problem with CI as it is like a hearing aid! at the end of day they r still deaf! i feel BBC should do its job more better! i feel lately BBC show one sided show too often as we need balance show!
Joanne Skeels
March 27, 2012
I’m a cynical person at heart. Especially when it comes to documentaries that claims to explore the ‘deaf world’. If it is done badly, the outcome is worse (two words: limping chicken). However, if it is done right, it is a step in the right direction and an honest journey into a world that can be scary. Especially for a six year old.
The six year old in question is Maiya, daughter of Rita Simons. Since birth, Maiya has had hearing loss, and has been told that her hearing will disappear completely. Because of this, her parents have to think about her future, and make the choice of either Maiya having a cochlear implant or to embrace her deafness.
Throughout the documentary, the options are clearly explored. To embrace the deaf world, Rita talks to hearing parents of deaf children, goes to Mary Hare School, and trying an experiment of wearing hearing aids. I have to praise Rita for entering the deaf world, and trying to understand it, though at times she was overwhelmed. Most people don’t even try.
What stood out in my mind was when Rita is in the pub with a group of deaf people, and the issue of Maiya having a cochlear implant is brought up. One of the deaf participants uses the word ‘abuse’ to describe the view of a cochlear implant. Really? Abuse to me, is to bring harm to another person. To be negative. Surely all Rita was doing was out of love for her daughter, to ensure that she has the most opportunities possible? If a cochlear implant could do that, why not? And no I am not pro- cochlear. Far from it.
What is clear to me is that this show was about Maiya and her future. Maiya, as far as I could see, was happy in her hearing environment, with her family and has a natural flair for performing. This reminded me of my own background: I am from a hearing family, I was brought up in mainstream education and i am fluent in SSE. But does that make me any less deaf. No it doesn’t. For me, being deaf isn’t about whether you wear your hearing aids proudly, reject them and be fully Deaf, or having a cochlear implant. It is about having an identity, a language and a community in which you belong in.
Put aside the cochlear implant debate, the mentality of hearing versus deaf, at the heart of the programme was two parents wanting the best future for their child, whoever they are.
Don’t we all?
Kazza
March 27, 2012
As someone who is hard of hearing with a profoundly deaf sister, it is a shame that, still today there is the pressure to “pigeon hole” us into one catagory or another, it never will be as easy as that, there are so many factors involved ie family background, character of the child etc. The doc. was very moving, it made me think about my own parents, I dont think I have ever appreicated how hard it must have been for them to have to deal with two different types of deaf children and the awful dilema they had to face on how to deal with it, on top that they would have had the similar experiences of being told what they should do.
We were brought up orally, with hours and hours of speech training, we were told not to sign as it would affect our speech, my parents did what they were told and what they thought best.
Whatever technology, communication methods is out there, the knowledge, information should always be made available to parents, they should never be told that it has to be done in one way or another, the decision at the end of the day is between the parents to do what they think is right. If parents were given the correct unbias information across the board and not pressured into pushing their child into a certain mould, then I would like to think that parents should not be afraid to get involved in learning to sign with their deaf or hard of hearing child, it really does no harm at all, in fact we taught our hearing daughter to sign to help with communication as a toddler! At the end of the day the child in due time when they are old enough will make their own minds on who they want to be, just like my sister and me did. We are both oral speakers and signers we both move between the hearing world and deaf world. We also have seen the benefits of coclear implants too in others, and some of them are signers too!
Neither of us ever regretted the speech training, it has helped us, we did however tell our parents that we wanted to sign because we knew deaf friends who were signers and we naturally gravitated towards deaf children because we often were excluded by hearing children in the playground, we also sign and speak to one another.
Incidently our parents agreed in the end that it made no difference to our speech, the fact that we learned to sign!!