Surfers Paradise

I would like to seize the day and contemplate out-loud whether there is a justified fairness in the eligibility rules for a freedom pass, regarding those with varying degrees of hearing loss.

Except, what I am about to say regarding Cochlear Implant users may offend them and if that turns out to be the case, I sincerely apologise in advance, for being honest.

Those with a profound or severe hearing loss (like myself) cannot hear very well at all, with or without any hearing aids, are eligible for what Londoners call a “Freedom Pass”; this is a travel permit scheme which allows the named holder to “surf” London using the public transport system.

However, there are those who are categorized as having a mild form of hearing loss and if their range of loss does not meet, the minimum required – they are deemed ineligible for a freedom pass. One can work out the reasoning behind that since they may have enough residual hearing to, sort of, ‘get by’ without any hearing aids yet whilst supported by hearing aids they could be, almost, on a par to a hearing person. Nevertheless, the stress of travelling remains albeit for almost all of us since whatever announcements are broadcasted, not even hearing people can comprehend.

Moving onto (successful) cochlear implants users – A CI is considered the most superior hearing aid of all; this will enable the user to hear extremely well and ever so clearly, once again, more or less being on a par to a hearing person.

Why then, do those who are not eligible, have to miss out on the benefits of a freedom pass when there are CI users who can potentially hear better than them, remain eligible for a freedom pass? Go figure…

Inevitably, there will be those who throw their arms up into the air in protest, demanding the same level of benefits since they feel, they too should not have to pay to use the public transport system.

Above all, an unfortunate fact remains. That almost each (if not all) Travel Concessionary Department(s) has not acquired the necessary experience or relevant qualifications, in order to assist them adequately with reading audiograms or differentiating between the pros and cons. This inexperience does not help them or us, at all, so how can they truly appreciate the injustice that exits, in their rules of eligibility.

Thank you for your time and patience.

Rant Over 🙂

~ SJ (Sara Jae)

The Deaf Community – An Important Message.

Many years ago, deaf people were not considered to be in a position where they could be a proactive member of society. For at times, families would hide their deaf child away because they felt ashamed simply because they had a child who happened to be deaf or even worse, were not diagnosed as deaf but for want of a better word, dumb. Some of these people were mistreated, abandoned and abused.

Looking around us today, it is a completely different picture. It is not yet perfect but the deaf now have a community which has come a long way and I am using the word “community” and not “culture” because the word “culture” is rather complex and divisive. When one uses the word “culture”, it is in reference to customs, habits, language and many other factors that belong to a particular group of people who are different to others.

Sign language alone should not form the basis for a “deaf culture” because deaf people are born into a culture that already exists – if you are born into the British culture then by default you are British. Bearing in mind, that sign language is derived and based on our mother tongue. Both deaf and hearing people as well as monkeys and apes can use this form of visual language. On the other hand, it would be wrong of us to assume anyone who may be hard of hearing, deafened, deaf or deafblind automatically know sign language. To presume that everyone deaf can sign is not correct and it is misinforming our society of today.

A baby who has been born deaf into a British hearing family, growing up with the family’s customs and ways, can he suddenly deny his family’s culture and refer to himself as deaf only? Insinuating, that because his family is hearing, they do not belong to a “deaf culture” despite having tried their very best to provide their child with an enriching and balanced upbringing, encouraging him to speak, sign and integrate with his peers regardless of whether they were deaf or hearing.

It would be extremely hard for me to separate myself from the people that taught me everything I know and in the process hurting them in return by secluding myself to another particular culture, especially one that we find difficult to define.

To put it simply, we have habits (no, not those long brown gowns!) which is interpreted by some as “deaf culture”, or more appropriately termed as learned behaviour. On the contrary, we can learn it, be aware of it but it does not mean we have to adopt it.

Sadly, there are deaf parents who hope their child will be born deaf because they believe they belong to a deaf culture only and by having a hearing child, they would break that familiarity to what they only know. This is an extreme stance to have and it is one that is potentially damaging.

By simply saying to hearing people “If you do not make the effort to communicate with me then I will separate myself from you all together” is so not the route to take; the more they see of you, the more they are forced to understand you. I say forced because hearing people have the option to learn at least some basic sign language like finger spelling which should at least be made part of today’s school curriculum.

One (i.e. Paddy Ladd and his Deafhood book) could argue that residential schools for the deaf is the main continuity for “deaf culture” being learned – perhaps forty years ago but not today. Because forty years or so ago, the differences in technology, segregation and concentration then and now could not be more evident unless influenced and taught otherwise by the older generations.

As stated on NDCS website, “90% of deaf children are born to hearing parents with little or no experience of deafness or knowledge of how to communicate with a deaf person”. The other 10% would probably grow up with sign language as their first language in cases where the deaf parents also sign rather than having to wait until they have contact with other deaf children, which is normally the experience of the other 90% at school. Approximately, nowadays, 90% of those deaf children born severely or profoundly deaf are likely to be implanted before their second birthday – More than 60% of the children at Mary Hare School now have implants.

Where hearing aids and implants are concerned, people have feared deaf identities and the linguistics will be lost, “I am still deaf” one may remark. Of course, you will still be deaf because your hearing aid(s) or implants will not be in use 24/7 and you will have grown up as a deaf person, lip-reading, signing (if able to). The deaf majority at present, thankfully, now sees a CI as a superior hearing aid, which actually has very little bearing on “deaf culture” despite a tiny percentage that are anti-CI and vehemently trying to turn people against CI’s by using an excuse along the lines of “social cleansing”.

There is a term albeit rarely used, which is the “hearing brain”. I understand this to mean when someone loses hearing later in life after growing up living life to the max as a hearing person possibly could, has been fortunate to receive a cochlear implant, only to characteristically revert to whom they grew up as. Do we or rather, should we put that down to “hearing culture”? When it is whom they have learnt and happen to be, within themselves and society just as we are who we are and that others have taught us who to become.

My fear of seeing people belonging to one culture and denying everything, everyone else around them is that there is a danger of separating ourselves from the mainstream culture we have to live in and share.

In being exclusive, this will undo all the hard work that has been achieved before us, by the many generations of deaf people. They are the ones who struggled and fought hard to finally be accepted within the mainstream society today. If anything, we should continue to strive albeit much harder to keep this sense of inclusion and integration developing but there is a cycle, especially where learnt behaviour is concerned, reoccurring in many senses that people need to break out of this habit, especially if they want to advance further as an inclusive and diverse community.

There is a still a lot that has to be done, in terms of educating society that we are all equals and just as capable but not by creating and realising any further divisive ideas. With positivity, forward thinking and unity, this can be achieved by the deaf community but only if the will is there.

~ SJ (Sara Jae)

When is someone “too young” for a Cochlear Implant?

Just the other day a baby was in the news for being the youngest to have a cochlear implant at the age of 3 months and 3 days old. Evie Smith had the first device implanted in her right ear, and then the second one seven weeks later.

Evie Smith
Evie Smith

Such a young and vulnerable age to be undergoing something potentially very traumatic that could affect the rest of her life and her parent’s lives who bravely chose to make this decision on her behalf. Evie became profoundly deaf after contracting pneumococcal meningitis which led to bony growth – or ossification – in her inner ear. It was a case of now or never. That does not mean they had no choice but to have the implants done there and then as there are those who have had their ossified cochlear drilled through to allow the implant’s electrode be threaded in. This also means the recovery period takes longer and potentially more pain. Evie is now aged six months – and returned to St Thomas’ NHS Hospital in London last week to have the devices activated.

Putting aside the baby’s illness, the question arose was “How old or rather how young would be suitable for them to get an implant?”

Various perspectives came to light whilst respecting each other’s choices, feelings and decisions. It was extremely educational and very insightful. Here are some of those.

One reader’s view was that it is morally wrong as it seems to be a great pity that parents and guardians these days are not being given sufficient time to consider wider options (& pro’s & con’s) via both the medical and social/linguistic perspectives. That it is crucial to send out clear messages that there are mitigating circumstances involved, not just for the sake of having one so early after being born.

Another member’s view was one that is shared by quite a few. For parents to wait until their child was old enough to make a balanced and informed decision, for themselves and until then, they are too young.

One has a friend who experienced the pressure to have her baby implanted. She refused and was continued to be pressured. She then asked about specific risks and they brushed them aside. It was all one direction, there was no balanced information. We can wholeheartedly understand a parent wanting the best for their children, wanting to ‘reduce the impact’ of deafness on their child or their family life. It would be good if parents considering implantation of their child to be assessed and provided information by two maybe three separate parties – a holistic approach. What one party won’t share the other will, thus parents will have both the pros and cons.

Another does not like the idea of these decisions being made for children, unless it is a matter of life or death, which is different. From her perspective, she is thankful that CI’s were not around in her day and her (hearing) parents did not have to make that decision for her to have one. She knows they would have put her through it given the choice because they would have been persuaded that it was the best thing for her.

A young man who a reader knows, his mother was pressured to get him an implant. She adamantly said no and that she would wait until he was old enough to decide. He can speak, and sign, and was asked at 13, 16 and 19 “Do you want one?” and he chose not to. He shared the fact that he was very happy his mother chose to let him decide.

Some people feel there is no point in trying to fix what isn’t broken. Others feel hearing aids are conducive enough for them and that they would not really benefit from a CI. They are happy as they are and proud of it.

When one reader’s son was first diagnosed as having a hearing loss, she was immediately pitied by audiologists and given information about cochlear implants (she was even told there was hope of nerve transplants within 5 years). It was never an option for her as the idea of surgery to make him hear just seemed to be too much like playing god. He is who he is…. it just so happens that he is deaf. Not all parents will embrace the idea of bringing up a deaf child, but sadly there still seems a lot of pressure to make them ‘hearing’ She was only told about the options available to help integrate him into the hearing world, no information about British Sign Language (BSL) yet Makaton was mentioned and she was directed to watch Mr Tumble?! Not that there is anything wrong with Makaton as it is derived from sign language into a simpler form for those who again have no choice but to rely on it as their language. There was no advice given on centres for the deaf where she could possibly discover stories about successful deaf people. She had to do that for herself and agrees that parents should have a choice but with all the options explained clearly.

The two next-generation methods now being researched are implanting electrodes directly into the acoustic nerve and more recently there are experiments into the possibility of implanting directly into the cerebral cortex. So this means that in the fullness of time almost any kind of deafness can be treated to some degree. This is beyond the CI and in a few years’ time may replace it.

An awful story was shared about a blind man who had been given sight for the first time in the seventies or eighties. The Doctors found him sitting on the window ledge with his feet dangling over the edge (outside). The doctors were freaked out, panicked and asked him what he was doing. He told them that he was going to step onto the path and go for a walk – He was five stories up?! He had no, and was never able to develop any ‘depth perception’. Additionally, although he could see, he could only ever draw things that he had touched. It is a really sad story as he spent the last 6 months of his life sitting in a darkened room and committed suicide eventually. An extreme example for comparison but some are really inclined to believe that those born deaf with no access to sound have brains that are hard wired very differently.

Currently several people are on this journey and one family shared with us that they were still undecided. They have signed to their son since they found out he was deaf at three months old. They know that a CI is not a cure for deafness and he will always be deaf. They are not trying to fix him but worry when he is 13, 18, 21 what he will feel about the decisions they made. They believe BSL should be his primary language and want him to have the best access to sound be that hearing aids or CI. There is a developmental window when he is most likely to benefit so waiting until he is significantly older is not really an option due to neuroplastic opportunity. He can always choose not to use his CI but he won’t be able to turn back the clock to make a CI as effective then as it might be now.

One reader’s only regret is that they were unable to have a CI at the earliest possible age. As unfortunately the technology was not around then. But it definitely would have fallen into the life changing category as it would have given them the independence they needed.

There are some professional individuals today who know nothing about the beautiful British Sign Language, deaf culture and history. Sadly these people go on to make life changing decisions for deaf children and adults. It is these professionals that speak for us, dictate how our community should be and how not to be. We have a voice of our own and it is frustratingly sad when some people distort our voices to suit their own agenda. We are just as capable as they are of running the country, perhaps even better?!

One common relative that seemed to unite everyone was the fact that we all hoped and wanted the child to have the best of everything. To hear, speak and sign. To embrace everything. And there are quite a lot of CI users today who do just that. Lizzie believes the best way of being is to embrace and play to the natural strengths of every human being. It doesn’t matter if you’re deaf, hearing etc. Inclusive in its best incarnation means that – embrace everyone and their strengths. An ideal society would be like that.

All the medical evidence tells us that the earlier the implant is done, the better the end result. Neuroscience has provided new information about critical periods for brain maturation, characteristics of plasticity in a maturing brain, factors that affect central auditory pathways, and cortical re-organization that can occur when stimulation patterns differ from the norm.

The inevitable question was finally asked of me – based on how the discussion had developed, would I still take the view that parents should wait until their child can consent?
This question made me smile because the discussion had proved conclusive in two very different senses – morally and medically.

Morally, for peace of mind I would prefer to let the child choose for themselves what they would like as I feel appreciative about being given that choice myself. I have deaf parents and at one time my name was put down for a CI. In the end, I decided not to tempt fate as I can hear with my hearing aids just as well as I would with a CI. If my circumstances changed medically, I would then re-consider my options.

From a medical perspective, I can now see the benefits of getting a CI done, the earlier the better – provided the child still has the best of all worlds around them. Most importantly for the child to be happy and content regardless of what their medical status is. If it turns out that hearing aids does not work for the child but a CI would then that is their right, to try and give them the best chance they deserve – to take the best option available to them. When it is weighed like that medically, being able to hear to whatever extent is better than not at all. Everyone is different and it is more or less a case of each to their own, based on their medical histories.

A friend who is also an audiologist has this to say about one’s experiences and their journey: As ever with controversy; never a right nor wrong. you just have to act as best as you can given the circumstances at the time.”

Thank you to all who made this potentially controversial topic into a most interesting, balanced and pleasant setting, certainly living up to it’s designated web address “views from the tree house”  It is one reason why others and I love “The Tree House” so much because in our eyes, we are all equals – regardless.

~ SJ (Sara Jae) 

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