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 ūüėú
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 ‚ÄúFreedom Pass‚ÄĚ; this is a travel permit scheme which allows the named holder to ‚Äúsurf‚ÄĚ 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 ‚Äď 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 ūüôā

~ 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 ‚Äď 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 ‚Äúcommunity‚ÄĚ and not ‚Äúculture‚ÄĚ because the word ‚Äúculture‚ÄĚ is rather complex and divisive. When one uses the word ‚Äúculture‚ÄĚ, 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 ‚Äúdeaf culture‚ÄĚ 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‚Äôs customs and ways, can he suddenly deny his family‚Äôs culture and refer to himself as deaf only? Insinuating, that because his family is hearing, they do not belong to a ‚Äúdeaf culture‚ÄĚ 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 ‚Äúdeaf culture‚ÄĚ, 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 ‚ÄúIf you do not make the effort to communicate with me then I will separate myself from you all together‚ÄĚ 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‚Äôs school curriculum.

One (i.e. Paddy Ladd and his Deafhood book) could argue that residential schools for the deaf is the main continuity for ‚Äúdeaf culture‚ÄĚ 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, ‚Äú90% 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‚ÄĚ. 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, ‚ÄúI am still deaf‚ÄĚ 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 ‚Äúdeaf culture‚ÄĚ despite a tiny percentage that are anti-CI and vehemently trying to turn people against CI‚Äôs by using an excuse along the lines of ‚Äúsocial cleansing‚ÄĚ.

There is a term albeit rarely used, which is the ‚Äúhearing brain‚ÄĚ. 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 ‚Äúhearing culture‚ÄĚ? 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‚Äô 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‚Äôs 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?‚ÄĚ 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‚Äď 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, ‚ÄúHow would YOU like to be called?‚ÄĚ Be the change you wish to see so start that ripple effect by being courageous and letting your GP‚Äôs 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!

РIn 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 Рto 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 Рis 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)