Are You One?

Some people be sniffing the walls in Audiology!

Surdusphile.

Surdusphile.

Is someone who has a fetish, a deep obsession with deaf people, deaf culture, deaf devices, sign language, etc, etc.

~ SJ (Sara Jae)

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.

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

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