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> > > Rita Simons - My daughter, deafness and me (BBC1)

21 March 2012

screengrab portrait of Rita Simons sitting thoughtfully with her hands resting under her chin

Actress Rita Simons ponders the question of how to serve her deaf daughter's best interests

This documentary about the Eastenders star Rita Simons and her deaf daughter is the latest instalment of the BBC's Beyond Disability season. Charlie Swinbourne gives us his view.

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 follows them as they explore the different options open to Maiya - from the possibility of attending a deaf primary school, to learning sign language, and having a cochlear implant.

The big fear for Rita and Theo is that Maiya will lose more of her hearing. She 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 they sound 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're also 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 visits a pub where she meets some deaf people, and is told by one of them that giving your child a cochlear implant equates to child abuse.

It was a disappointing moment for me. It felt extreme and I didn't feel that the deaf people in the pub reflected the the fact that there are a range of views within the deaf community as implants have become more prevalent among deaf children and an increasing number of deaf adults.

As the documentary ends, we find out that the family 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.

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 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 had the chance to meet other deaf children (such as those in the primary school), particularly for an extended period of time. Those felt like missed opportunities for Maiya to reach out and connect with the deaf world.

Deaf journalist Charlie Swinbourne is editor of deaf news and views online journal: The Limping Chicken

You can see the programme on BBC iPlayer until 28 March at http://www.bbc.co.uk/iplayer/episode/b01dwf9z/sign/Rita_Simons_My_Daughter_Deafness_and_Me/

The BBC's Beyond Disability Season continues until 29 March. Go to DAO's listings pages for details

Comments

Lizzie Mirzsa

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28 March 2012

I have a son who is 6yrs old and is bilaterally implanted. He was deafened aged 3.5yrs old due to a virus and implanted aged 4yrs. For us as a hearing/speaking family, we wanted our son to be hearing as he once did. He reaction to being suddenly deafened was heartbreaking. He was scared and angry. He now functions very well as a deaf boy with hearing form his implants. He has some language (with a regional manc accent), he sings happy birthday. He plays football hearing with his implants and swims deaf without them. My son can sign lots of words and says lots too. I run a local group for children with a hearing impairment (some wear aids, some cochlear implants) so he has deaf friends and deaf role models with other adults. He loves seeing other kids with processors stuck on their heads!!!

If he decides he doesnt want to hear in the future he can remove the processors, even have the impants removed. Somehow i dont think he will do that, we have to remove the processors from his head when he is asleep, he wont take them off!!

Unfortunatley, i have witnessed many negative comments by the deaf community about our decision to have our son implanted. I try not to get angry because its our choice and they have their choices to make. But i admit it upsets me. Only yesterday at my signing class, i was told my a deaf adult i was wrong to have my son implanted and should have left him natural??? i told her to remove her glasses and hearing aids and be natural. Sorry but who do these people thing they are. As a hearing adult i dont understand what its like to be deaf, but i know the world is hearing and speaking and i want my son to have access to as much as possible.

We make decisions for our kids from birth (breast/bottle, diet, religion etc etc). This is just another decision we agonised over and we have made the right decision for our son!

How a CI sounds? well your brain learns to decifer that noise, thats why when the kids speak (esp those born deaf) have regional accents, they can sing in tune etc.

My son uses SSE (sign supported english) in mainstream school and is doing extremely well).

win burton

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28 March 2012

I really agree with all of you who have said what a shame it is that the Cochlear Implant and Sign Language are presented as options to choose between instead of complementary and both equally vital - especially in the case of a hearing family and a child who is already enjoying a world of sound, but equally is well into expressive art and using her body! It's absolutely right that the addition of Cued Speech would be a great bonus for Maiya too as it would take the strain out of lipreading and sound discrimination in noisy school and home settings, and ensure she had that full visual presentation of English just when she needs it for learning to read, as it underscores all the little bits of speech like word endings, tenses, prepositions which can easily get lost in an imperfect aural setting and on which becoming a good reader depend - it also readily supports the phonics approach - and a tool that all the family including her twin sister can learn very quickly.

Cate Calder

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27 March 2012

I found the programme fascinating and it is clear that those children have excellent, highly motivated parents who are doing their best to find out what could work for their family. My main concern with the messages that they were getting was that it seemed very 'this OR that' you can have 'one OR the other' so choose implants and English OR BSL and the Deaf Community. I think there absolutely is another way - that child can 'have it all.'

I have worked as a sign language interpreter for many years but currently my role is much more about embracing both signed and spoken languages and cultures. The argument is that BSL is the only natural language for deaf children because it is visual. In my experience the English language (and 68 other spoken languages for that matter) can also be rendered totally visual by using Cued Speech. The family can keep English as a living natural language of the home but simpy clarify their lip patterns with the cues, Maiya does not need to 'hear' what they say at all but if she was implanted then she can certainly use the cueing to support her auditory memory of words, it can also (although that is absolutley not the aim of CS) be used to improve her own pronouciation if appropriate. Cued Speech is simply a lip-reading tool, they will only need to use it intensively for a short period in Maiya's life and then as and when needed for 'new words'. The lip-reading skills it will give her are valuable for life and transfer to 'non-cuers' too so she will not need everyone to cue for her. Cued Speech is not a language, it is only about giving visual access to existing spoken languages, it in NO WAY 'replaces' BSL (but it can be used alongside it as the way to make English accessible in a bilingual approach). As this child is obviously already a confident English user and is part of a culturally 'hearing' world, I totally understand why her parents want this to continue, and it can, easily with Cued Speech regardless of how much Maiya can actually hear . I think it would be excellent for Maiya to have it all and get access to deaf peers and role models too. Here is a child that can truly become bi-lingual and bi-cultural and the choice for English and hearing culture now does not need to preclude signing/deaf culture/Deaf identity in the future. I have met and worked with prfoundly Deaf children and adults who are multi lingual,fluent users of 2 or 3 spoken languages through cueing AND fluent users of 2 or more signed languages - there is no limit and there shouldn't be!

Cued Speech is a simple (not easy) system to learn, I 'got it' in 4 hours and could cue any word at the end of my first day. It takes time to remember each phoneme and to become fluent but a determined person could make it happen within weeks. So the initial learning curve is steep but once you've 'cracked the code' it becomes easier and easier. This is in stark contrast to acquiring good BSL skills, I love BSL passionately but will never stop learning it. I agree that a Deaf 'buddy' for Maiya could be a better way in for her and leave Engish to the family until they feel ready to take on another language and culture should they choose to.

So! I'd say to Rita and Theo there is another way. check out www.cuedspeech.co.uk

Much of what Maiya may lose through her deafness can be given back to her visually as far as spoken English goes. I think you cannot separate language from culture, use of a language un-locks access to the culture. With Cued Speech, Maiya and her family could keep and enrich their natural first language and I hope the Deaf community will welcome them all without judgement should the time come for BSL and Deaf culture to be a part of their lives too.

Sue Tweed

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27 March 2012

What a pity the option of Cued Speech wasn't considered - it can be learnt in about 20 hours and gives complete access to spoken language. Cued Speech is useful with a cochlear implant - to overcome background noise and for when the implant can't be worn (in the bath etc.) It can also be used alongside BSL to give access to both Deaf and hearing worlds. There's a wealth of information and lots of videos at www.cuedspeech.co.uk - contact the charity for more information about Cued Speech and low-cost training to use it.

Andy

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27 March 2012

I think I should have posted the full youtube address - done so here

Andy

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26 March 2012

I haven't seen this yet,but will. There is another option Cued Speech. Many parents are choosing to bring their children up bilingually - learning BSL and using Cued Speech to get access to English. I've added the link to Hannah's Story which is based on a real life story of how a mother decides what's best for her son.

Jennie Finlayson

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22 March 2012

I fully understand Rita's problems, having a daughter, Sarah, who went from normal hearing to profoundly deaf in both ears, following mumps, at 3years old.

Briefly, her tantrums were so awful, we feared brain damage. No details here, but she is now 43 and has run her own business for 12 yeasrs.

There are huge decisions to make, but fortunately, or unfortunately, depending on your views, cochlear inplants were not available at that time. When they became available, I said to Sarah that she would probably have had one as a child and would she consider it now. Her reaction was immediate - a great big NO!

Like Rita, I thought why is she refusing sound ??? She has explained to me that people with the implants are neither in a deaf world or a hearing world. She went to a deaf golf tournament in Australia with deaf from all over the world and emphasised how sorry she was for those with cochlear implants. It waas easier for deaf from, say, Japan to communicate than it was for them.

Having watched Theo's visit to Oxford and the differences in the sounds, compared to hearing people, am beginning to realise what my daughter means.

Rita and Theo I think, should speak to younger deaf, of all persuasions and of all abilties, if possible. As the operation is irreversible, I agree with Theo here, that a bit more time is necessary before deciding.

They are lovely parents and am sure they have covered it, but what about Jaimee in all this? I was very concerned about my son at the time and spoke to his school, cubs etc. as it was bound to affect him too. As the girls are twins, the consideration is massive.

If Rita or Theo think that I could help in any way, then, my pleasure to do so.

Colin Hambrook [ED]

/
21 March 2012

The one thing that came across well was the struggle for hearing parents to find the best way forward for their deaf child.

As a parent you are hyper-sensitive about doing the right thing by your child. I agree with Charlie that the accusation of 'child-abuse' for considering a cochlear implant was an extreme over-reaction. At the same time, there wasn't really a balanced view being portrayed. There was no sense of thinking about deaf role models; but perhaps, more importantly there was no sense of any consideration for how the little deaf girls' sister felt about what her twin was going through.

The documentary descended into an argument about the rights and wrongs of cochlear implant, and I wondered how much that was about the film-makers wanting to produce something controversial!

Sarah Playforth

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21 March 2012

I think this programme needed.a much better balance of views and more input from Deaf people who could have explained reasons behind resistance to implants in more depth. The question of Maiya's inevitable search for identity when she reaches her teenage years was not covered and I found it sad, if at one level, understandable, that Rita seems to want a "mini me" rather than a child strong in their own separate self.

Bev wilson

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21 March 2012

My son was implanted 7 years ago and the comment Rita said at end the end of programme was so spot on if the equipment is out there I would try anything for him .I was amazed and shocked by the example of how sound is heard through the implant as my son does hear sounds around him but as no speech to tell me .loved the programme

John Smith

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21 March 2012

We visited the same "deaf primary school" last week with our deaf son and his reaction when he walked into the classroom and met the children, many of whom had cochlear implants, was amazing. It was immediately clear that he would thrive in this environment. As a parent there's a lot of agonising over every decision but, if you're lucky enough to be suitable for a CI, the benefits often outweigh any concerns. I hope the deaf community would welcome all deaf children and adults, regardless of their choice of hearing apparatus?

Melissa

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21 March 2012

I had a cochlear implant operation two weeks ago. Switch-on is in two weeks' time. If it were true that a deaf person could speak to a stranger on the phone with a CI, why did my surgeon keep me waiting a year for one? 

The whole process is never straightforward, irrespective of how old you are. I know of two deaf people who had CIs done aged six. They didn't suit either of them - despite the customary intensive speech and hearing rehab that came with them - and they're now in their 20s. 

Having had a CI done myself I have an idea of how much it asks of a child - and personally, if we were parenting a deaf child we'd oppose it as far as possible. Having said that, we would never dream of imposing our views on anyone else. We value diversity and freedom of choice far too much. 

I was invited to an interview for the programme. The producer had seen my film, CODA, and was interested in learning about my childhood experiences of deafness. It was only at the very last minute that the specialist babysitter I'd booked for the day let me down. Having seen the programme last night, I do feel Rita could have benefitted from my perspective. 

Ultimately I wish her the very best of luck in all the decisions she makes on her daughter's behalf. I mean that most sincerely. As a parent to a child with a disability, I can understand how fraught with issues her and Maiya's journey can be - although obviously, being deaf is nothing like having CP. I had a CI for my daughter - I expand on this in my blog, www.themostynthomasjournal.com. 

I know that a CI offers no guarantees. But like Rita, it was a risk I was prepared to consider in terms of improving quality of life for my child.

Maggie Knight

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21 March 2012

One thing the program didn't cover was the extensive advice given to cochlear patients about their expectations from an implant. That way parents realise that it's not a 'magic bullet'. The cochlear teams are very careful not to give false hopes about what an implant can achieve. As for cringing about the doctor's comments about not being able to hear a chainsaw, in my case it's true - I'm completely deaf without my implant,so no, I wouldn't be able to hear a chainsaw, but I can use a telephone.

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