Deafness Blues

Challenges ahead

I was reminded today just how hard it can be, to be deaf.
An ATM was hungry and gobbled my bank card – not that anything was wrong with my card or account. Stupid (Link) machine played up. Arse.
Panicked a little as I had both X & X with me. I looked at Y in despair and said “My card is gone.” He also knew it was the machine and not my card cos I’m good that way 😜
Banks were closed… tried calling a number via my phone but I’d no credit. I’ve the minutes!! But not credit to call their rates… my money was in the bank. My card was in the machine.
Double arse!
Y’s luckily has dual SIM cards so he could use one of them to call the emergency line with.
Braced for hassles because he was speaking on my behalf.
“I need her to speak on the phone”
“She’s deaf, she cannot hear on the phone.”
Five mins later, I was asked to say my DOB into thin air, phone next to my lips.
How surreal.
Then my address.
Spoke to the ghost again and pushed away the phone. How uncomfortable that was yet it had to be done.
Bearing fraud in mind, card was stopped and a new card ordered.
X looked at me the n amazement, “What if you couldn’t speak clearly enough?!”
A night of despair and undue stress would have been the order of the day otherwise.
Gratitude overcame me and thanked Y for his help.
How frustrating.
For us all.

Treble arse.

~ SJ Sara Jae)

Update: There is no need to use Signvideo (which is only available with several banks) or Typetalk because downloading a mobile banking app will do the job. And then some.

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)

Hearing Hands.

Once upon a time, Muharrem, who has a degree of hearing loss went about his daily routine as usual. Except, he was then pleasantly surprised to see strangers all around him using sign language, which made his day pass by easier.

When he finds out why and how, his reaction is priceless and most likely this heart-warming stunt will make you shed a tear or two, also.

All because a world without barriers is everyone’s dream.

This ad was made by Samsung, Turkey in order to promote their video call centre – for people with hearing problems.

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)

How Would You Like To Be Called?

I had been anticipating my ENT appointment for months now and finally this day had arrived. But, what a day?!

To begin with, I had been a regular patient at my local audiology department but when we last phoned for another appointment – I was notified I had to be referred back to audiology by visiting my GP, to ask to be referred to ENT who would then put me back through to audiology. What a palaver but if I needed new ear moulds and hearing aids then so be it. I persevered.

Going through the broad spectrum of emotions and thoughts, as I decided I needed to be there at least twenty minutes early to claim a prime position, in the waiting room – close enough to scan lip movements for any names being called out. I had clarified with the receptionist if they would be calling out names, she confirmed this and that she would let them know I was hard of hearing. I explained that I was deaf to reinforce just how profound my hearing loss is. “Oh ok, same thing” she replied. I had to remain calm and took my seat albeit feeling rather surprised.

“Mumble Mumble” started off the processing by the nurses and trainee doctors. Feelings of dread were not appeased nor swayed when I noticed this LED display board to one side welcoming patients;

“Welcome to ENT you will be called through to see a member of the ENT team”

IMG_0966

My GP’s surgery has the same sort of contraption except they use it to announce patients’ names on it, for a certain designated room to be seen by Dr X or Y. So relatively I wondered why the ENT and Audiology departments despite being specialists, could not implement the same quality of service to be inclusive of all. Digital technology in this day and age has advanced greatly but not in our NHS hospitals it seems. This needs to change for the better, for their sake and ours. After all, they did ask how patients wanted to be called.

How would you like to be called?
How would you like to be called? On the screen in ENT.

A Tree House dweller informed us that he once had a placard with his name on it whilst waiting for his appointment, much to the other patients’ amusement at the time. Unfortunately that is how appalling services can get and this is what he felt he had resort to in order to be seen.

I was now sensing the other patients in the ENT waiting room were becoming restless, demanding to know when they would be next seen and this poor nurse was trying to appease them. By this time I had managed to pull myself together from feeling quite annoyed at being passed to audiology and then back again to ENT not knowing why or if I would be seen, if at all. If they were getting angry at being delayed by mere minutes, I thought to myself how should I be feeling only to be made to wait potentially a few months extra for my new ear moulds and hearing aids after waiting months already, especially in such an environment?! I decided I was not going to let them feed me any negativity and found some inner peace to remain patient.

Patience is a virtue.
Patience is a virtue.

From not the usual place names were being called out (the doors in the photo above) but further to the side – I just about saw my name, whilst glancing, being clearly spoken. My turn – Glee and amazement at catching that! I had the consultant this time around who was particularly interested in my family’s history of deafness – why they were deaf, how and if my children were “ok”. He then enquired how my hearing aids were. I mentioned I had had them for about ten years now and the last time audiology tried to provide me with a new pair they did not suit me so handed them back hence why I was now eager to try again as my current ones were starting to become slightly temperamental. I am also scared of being left stranded with nothing to hear with. He explained to me that any new pair of hearing aids is most likely not going to suit me based on my audiogram so he is ordering a head scan to find the biological cause of my deafness since my mother was born deaf – cause also unknown and my father became deaf through meningitis. He was especially interested in my mother’s deafness and if she could talk well. “Yes” I replied, “Just like I can”. The consultant then expressed. “I would like to put you down for a cochlear implant if the new hearing aids do not work for you”. Instantly emerged a brand new, never experienced before emotion and it is one I cannot find the words to describe.

As my consultant returned me to the audiology’s waiting room and found me a seat; I thanked him for his time. Suddenly I found myself dismayed, wondering why I was once again back in Audiology! Recurring feelings along the lines of, “Do they know I’m here / am I in their queue?” I scanned once again for any names being called out. Whilst scanning one caller, I had not noticed another came out to call but noticed she had gone into reception to make a query about this piece of paper in her hand. She came back out and said… My name – Glee once again! Phew, that was a close call I determined– I had missed that first time around because I only have one pair of eyes.

Ear moulds casts were made and she too concurred that the new hearing aids might not work very well for me due to the “different new sounds” they would make. But as anticipated I was going to have to wait at least two months more for another appointment to get and try out these new hearing aids. If only they had seen me when we first called as I was already a patient then, I would not have had to wait so many months more. She understood my frustration and said she would try to get something earlier.

A cochlear implant? Me?! I must admit though being an honest person, if I hadn’t written this article regarding cochlear implants I most probably would not have been as open to the idea. One thing I do know at this point in time is that I am not looking forwards to the realisation of being left with less than adequate hearing from prospective replacement hearing aids – my current ones have lasted me for so long and they will not always continue to serve me well. Remaining positive though that the new pair will work just the same or better and if not, perhaps the next steps are meant to be. I would very much prefer to have the same quality of sounds or better – not less. Just as you would expect a replacement PC of the same specifications or upgrade to better specs.

Does this mark the beginning of what could be the next stages in my journey? Only time will tell and more patience once again. Upon reflection, I realised that by asking patients to be referred through all over again it was giving the consultants a chance to catch those that may have filtered through first time around and a chance to produce a more updated yet better care?

Going back to the title of this article, “How would YOU like to be called?” Be the change you wish to see so start that ripple effect by being courageous and letting your GP’s surgeries, Audiology and especially the ENT departments know, just how THEY can be more inclusive and improve their services.

Carpe diem!

~ SJ (Sara Jae)

What’s That Noise?!

Sara, whilst sitting at the dentists, hears this unknown noise and so asks her kids, “What’s that noise?!” Her daughter responded hesitatingly, “Drilling!”.  She then realised just how thankful she was not being able to hear that and relatively came the question, “What other noises can we be thankful for not hearing?”

This prompted these answers as below, from fellow Tree House dwellers.

– Snoring.

– People chewing.

– Knuckles cracking.

– My dog licking next to me.

– People weeing in the public cubicles and heavy breathing.

– My son enjoys not being woken by the rubbish / recycling lorry … or rather I do!

– In Austria right next to my parents house, tractor with snow plough!  That scares the life out of me!

– Cats fighting, car alarms, sirens sometimes, children screaming … Blissful at times, very worrying at others.

– Squelching noises when prepping food.

– One that gets me every time is when people scrape their forks with their teeth- and grinding their teeth.. irritating!

– The wife! (You brave, brave man!)

– Sara confessed to just having a Cadbury eclair and was conscious of the noise it made there and then despite never noticing before!  Suck, squelch … Hmmm nice chocolate … Squelch!

– Forks scraping on plates, cotton wool on teeth at the dentist, other people snoring when you’re camping and bicycle brakes squealing.

– I’m glad I can’t hear the traffic or other sounds when I’m sleeping.

– Excellent not to hear drunken party revellers in the next hotel room! I was talking to one of the wedding guests using the same hotel as me..she could not sleep a wink due to the loud music and talk in the next room. Deafies sleep pretty well throughout.

– Paul told a story: Hearing aids that whistle at 3am! (There’s a story coming!) It was my mate’s stag do. We had all had copious amounts of the “falling down water” and we all went back to the youth hostel to retire for the night. There was a strange noise coming from one of my friend’s bags. Although the room was pitch black and it took me and another hearing guy over an hour to discover where it was coming from. When we found it, liberating the battery from the aid, me and him both slept reasonably well (apart from being surrounded by 4 deaf heavy snorers) until they woke up around 8am and so me and him had about 4 hours sleep before driving back to Birmingham. Oh its great being hearing trust me(!)

Noise

The Deaf.

I happened to be in the vicinity of the National Portrait Gallery when I was notified that Grayson Perry had done a piece on the deaf community as part of his “Identity” series. This intrigued my friends and I so we seized the opportunity to view his art work – some of which resonated with us, especially the “Memory Jar” and “A Map of Days” which was rather unique.

The episode which portrayed Grayson Perry’s time and artwork as a result from having spent with selected members of the deaf community was being broadcasted the very same day, amongst his other research with other aspects of “Identity”. Once I saw the artwork that reflected the deaf community on display in the National Portrait Gallery, I just knew there would be a repeat of certain schools of thought, of which some will say is justified for their own reasons. I decided not to watch the said episode for my own personal reasons which was respected.

The Deaf.
The Deaf.

grayson perry 2

However, I suggested another piece of Grayson Perry’s artwork to my husband as I thought he would be interested in that aspect of Identity and he took it upon himself to watch the episode that featured Grayson’s research and the artwork. It happened to be shown in the same episode as “The Deaf”.

Subsequently we had a chat and I felt compelled to relay his thoughts to the rest of the Tree House dwellers for another angle on it all coming from a hearing person’s perspective.

My husband (who studied at St Martins Art College) says…

“As an artist it is not Grayson’s fault that he could not portray deafness very well because he is not deaf himself therefore could not grasp the true concept which is why his poster came out rather boring as deafness and sign language is very visual”.

On the other hand, my husband also felt “certain people who were chosen, were very selective in who they “grouped” with.” 

My husband then reminded me which I completely forgot about, how he did an identity project for his Masters as he is an “alien” in this country – One aspect of his project, he made a video of me signing and this video went up for debate amongst the students who were left feeling frustrated at not being able to understand and they dictated that he could not use this video because he was not deaf. He shut them up by saying it was part of identity and who he is, being an alien in this country – reversing the frustration back at them, at not being able to understand and/or follow a language.

It takes a lot for my husband not to like anything and what he perceived being presented via the deaf people in the episode was nothing new – to him.

I can only wish Grayson Perry had the opportunity to be exposed to a wider spectrum of the richer diversity within the deaf community so he could truly understand the issues that comes with deafness and our various communication abilities, skills and needs. There is no deaf culture or D/d per se – is there a hearing culture, H/h? Is there a blind culture, B/b? Let us not create any more division when there is no need or justification for it.

On that note, we would like to invite Grayson Perry and anyone else who may be interested in the deaf community to visit us at the Tree House, who would also be more than welcome to come along to any of our events in order to meet us for a truer insight into just who we are, a community that respects each and every one’s needs and their/our choices of communication methods which results in TOTAL communication. A community that respects each and every one for who they are and wish to be. A community that is inclusive of all.

But not one that would even dream of wishing a child would be born deaf.

Thank you for your time and patience.

~ SJ (Sara Jae)

By Any Means Necessary

A recent article at the Rim actually made me think and see things a bit clearer after recent posts over at the Tree House was questioned regarding our preferred methods of communication…. I did not know whether to laugh or feel insulted as I had not seen any evidence within the Tree House to justify said question. Dwellers were extremely quick to reinforce the ethos of the Tree House and supported the fact that it was a place where everyone could be themselves and accepted regardless of their communication needs and/or abilities. After a few moments of head banging on the wall, peace was once again thankfully restored.

At this moment in time, the rifts between certain communities could not be wider. Attitudes in today’s society seem to be going backwards that even I am disturbed to find this trait exists within our own government.

In our case, I shall use the example of the “deaf world” and “hearing world”. A lot of it comes down to other people segregating the two worlds, categorising and judging. I have not felt accepted in either “world” because of how they have perceived me to be “different” and dictated how one should be,  i.e.: I was damned if I did sign/speak or damned if I did not sign/speak. Coming from a family who happened to be deaf and having signed all my life you would assume I would not present myself the way I do – why should I appear in a certain way? I am who I am and here in my world, there is only one that everyone shares. No one is categorised unless they categorise themselves and impose the two worlds onto us.

Why does there even have to be any restrictions in the first place when it comes to communication? All forms of communication should be embraced and not rejected. Surely it is an advantage if one can express themselves by different means necessary? Over time as communication evolves and improves, it will become even more enriching for us as there is nothing wrong whatsoever in being multi-lingual.

 “If all my possessions were taken from me with one exception, I would choose to keep the power of communication, for by it I would soon regain all the rest.” – Daniel Webster.

SOS
SOS

~ SJ (Sara Jae)

Show Us You Care. Be Deaf Aware!

To Whom It May Concern,

‘Deaf Awareness Week’ is upon us, so we thought we would take this opportunity to highlight what deaf awareness means to all of us. ‘Deaf Awareness Week’ happens for a reason and we wanted to share with you why we think it is important.

First of all, as a collective group of deaf people, we wanted to educate those who want to learn about what deafness is like for some people and how to overcome what may appear to be issues and barriers. In some cases there have been situations related to deaf awareness (or in many cases the lack of it), which have resulted in life threatening or even life-saving events. Although these situations are rare, they are still happening as a result of misunderstandings caused by peoples’ lack of deaf awareness. That is why it is so vitally important to inform you of the various support, needs, abilities and equipment the deaf, hard of hearing and deaf-blind people have and require.

Most people do not realise there is a deaf person besides them, or in front of them. It is the majority of the time, a hidden disability. People only realise it when it becomes visibly clear. The person may start to sign or their hearing device(s) becomes visible. More often than not, when they do not respond to your pleas of “Excuse me please” – they are assumed ignorant or rude.

For some people ‘Deaf Awareness Week’ has started to lose its impact because it feels like it is the same old beat year after year. Although it is one way of trying to drum it into some people who may not be aware of it or what it represents, for some other deaf people they may know the tune all too well. It naturally gets a little irritating for the deaf when they see no changes taking place in society to raise deaf awareness. There is not much point trying to tell other deaf people what they already know. We feel that we need to teach everyone in our society the importance of deaf awareness, whether you are deaf or hearing and touch their inner souls. Deaf people need to actually feel that changes are taking place within the hearing world and that real steps are being taken to reach equality and inclusion for all, regardless of anyone’s disability or differences.

“What are those in your ears?” is one of the most common questions deaf people are asked, by young children especially. Once again, it is because they are visible. “They are hearing aids – they help people to hear more” we say. An amazed expression inevitably takes over their sweet angelic faces. The children then grow up, knowing that deaf people exist. This is because they have interacted and been friends with them, to some extent. Why is it then, that adults who know there are those living with hearing loss around them, cannot make the adjustments to at least meet deaf people half way and show greater deaf awareness??

We travel just like hearing people do, on public transport. Yet we endure panic attacks whenever tannoy announcements are made. Why is this? Because there are no on-screen displays to relay what was said over the tannoys, for those who cannot understand or for those who misheard and would like confirmation, such as – foreigners who cannot speak our language. Sounds consist of many different layers and hold so much information. Yet we, the deaf, hard of hearing, deafened and the deaf blind miss out on hearing and processing vital travel information like this on an everyday basis.

Subtitles (otherwise known as captions) are a vital tool, not only for deaf people but also for many others who would benefit from them. They are inclusive, educational and also they can be turned off whenever they are not needed. Why do we need to keep asking for them to be provided? Why do we need to keep asking for interpreters, be it a Signer, Lip-speaker or note-taker? Surely we are not asking for too much, to be remembered and considered. To be asked what means of support we would like. To be honest, that precise moment when someone who understands, remembers and is deaf-aware comes out of the blue – it is heaven sent. That elated overwhelming feeling is just indescribable. Only a deaf person would understand what it feels like.

Imagine what it would be like if you resided in a country, whose language was not your own native language (both spoken and written). You feel like an illegal alien seeing and feeling the chaos happening all around you. You can just about hear the hustle and bustle but not understand it due to the intensity. It becomes unbearable having to endure this on a daily basis. Then suddenly after what seems to be an extremely long period of isolation, a friendly, considerate and kind person asks you in your mother tongue, if you need any assistance. For you, that would be a God-given moment. This is what it feels like for us to be deaf in our own society, every day.

What if you were seriously ill in hospital and you desperately want to know what is wrong with you and what is happening to you. But you cannot ask, or be understood by the doctors and medical staff. They try to tell you but you cannot understand them. You feel immense frustration at leaving your health and life in their hands while realising just how fragile it is and how little you have understood about your own health. We believe it is inevitable that a deaf person’s life will one day be taken accidentally due to a misdiagnosis or fate decreed a path that turned by being lost in translation.

Imagine the love and pride you feel for your children. You have the opportunity to meet their school teachers and hear their praises. The school assemblies you are cordially invited to because your child is receiving a certificate or is taking part in a school play. You want to cherish every single moment. For us, we leave feeling disempowered and frustrated because we simply cannot follow or enjoy it to the maximum like everyone else.

Deaf awareness is just not there, in everyday life to support us. Yes, technology is advancing all the time and it is admirable how much more inclusive it has become. Because of it. But, it is up to people like you to want to instil that inclusion. The technology is there for you to use to increase access and promote equality for all of us. You only have to use it.

“Ask, don’t assume”. What do we mean by this? – This is when people assume what they think we need and provide for us accordingly, instead of asking. This needs to change. For instance, it is a common assumption that deaf people all use sign language. This is simply not the case. Although there is a sizeable minority who use Sign Language as their main method of communication, there are many more deaf, deafened and hard of hearing people who do not know sign language and use other methods of communication instead. There are various communication needs that different deaf people require across the broad spectrum, and their level of hearing loss and communication methods relatively vary widely too. Therefore, please, ask us what we would like in place, in terms of communication support, to enable access and to empower us to make us feel equal to everyone else in society. If the right communication support is not in place, this is when we most feel disempowered and disabled.

“Nothing about us, without us”. What do we mean by this? – So many times people will speak on our behalf about what they think we want or need. Without asking, consulting or including us – this for some people would be an insult because for us, we know best what works for us and what we would like in place. For some people, we understand its a form of paternalism. For others, it may actually be about publicity and/or trying to raise funds for their particular cause or charity.

We admire and respect people who empower deaf people to be independent and equal to everyone else. We take our hats off to these people because they understand what it is like to be deaf. This is what we need. They more or less understand to an extent the awareness and insights from being a part of our language and our culture. Good deaf awareness only happens when the empathy, understanding, consideration and support is there and it is truly meant.

So, in order to demonstrate good deaf awareness, we recommend the following simple but effective top communication tips to ease communication with deaf people:

•Make sure you have the person’s attention before you start speaking.

•Places with good lighting (so that you can be lipread) and little or no background noise are best for conversations.

•Face the person so you can be lipread and speak clearly (as you normally would) using plain language, normal lip movements and facial expressions.

•Check whether the person understands what you are saying and, if not, try saying it in a different way.

•Keep your voice down as it’s uncomfortable for a hearing aid user if you shout and it looks aggressive.

•Learn fingerspelling or some basic British Sign Language (BSL).

These tips are very simple, but are likely to lead to much better communication exchanges with a deaf person. For most deaf people, unfortunately their “Deaf Awareness Week” lasts a whole lifetime. For some, it’s a tragic yet progressive or sudden nightmare. To lose sounds and connections gradually or just like that can feel like a living hell. People who are more mindful of others tend not to take anything for granted.

As an example of what it feels like to lose your hearing try this video which stimulates the various hearing loss sensations (by ‘Hear the World‘). Please watch until the very end.

No captions were (ironically) made but we hope that it gives you an insight into how much we rely on captions in our everyday lives. At the doctors and hospitals when they announce our names as we wait nervously in reception for our turn at appointments. On public transport when someone makes an announcement over the public tannoy informing us that a train has been cancelled, diverted or delayed, for instance, and we don’t know about it. The list goes on and it breaches health and safety rules in many aspects.

No one is perfect but all it takes is good manners, common sense, respect, kindness and most of all, education. Knowledge is power. Good deaf awareness (be it in your home or work place) leads to empowerment, inclusion and full access in our society for all deaf, deafened, deaf-blind and hard of hearing people.

Thank you for your time and patience. Please, show us you care by being deaf aware!

Yours sincerely,

~ SJ (Sara Jae)

A collective group of people representing some of the 10 million deaf and hard of hearing people in the UK.

The Tree House Facebook group and blog

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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