So you have or are thinking about a cochlear Implant.?
Save a thought for those who cannot have one because they have NF2. There is hope, though, and this blog is to let you know about other methods of giving deaf people a sensation of sound. Many thanks to Bob Jordan for permission to post this.
Auditory Brainstem Implant (ABI)
Designed Especially for
Neurofibromatosis Type 2
The MED-EL Auditory Brainstem Implant (ABI) is a solution for individuals with hearing loss due to a non-functioning auditory nerve (Neurofibromatosis Type 2). Bypassing both the inner ear and the auditory nerve, the MED-EL ABI stimulates the cochlear nucleus (CN) and provides users with a variety of hearing sensations to assist with sound awareness and communication.
An ABI consists of two components, the external audio processor and the implant. The audio processor is either an OPUS 2 or OPUS 1. The implant consists of an electronics housing and an implantable soft silicone matrix with a 12 contact electrode array. The 5.5 × 3.0 mm matrix is the active interface between the stimulation electronics and the neural tissue. An additional reference electrode is used for advanced telemetry measurements providing added functional reliability and control.
The soft silicone matrix with a 12 contact electrode array is surgically inserted directly onto the brainstem. The implant stimulates the cochlear nucleus, which enables the recipient to distinguish a variety of sounds. Following surgery and the post-operative healing period of 14 days, the user is required to undergo an intensive training period with a qualified audiologist to learn how to interpret sounds and understand speech. Generally, it is important to realise that speech understanding with an ABI is not on the same level as speech understanding for cochlear implant recipients. Extensive training is all the more crucial for this reason, allowing the recipient to gain the best benefit from an ABI and to make the most of this advanced technology.
ABI Candidacy
An ABI is a solution for patients who are at least 15 years of age and who have been diagnosed with Neurofibromatosis Type 2 (NF2). With NF2, both cochlear nerves may no longer be able to function, or it may be anticipated that the nerves will no longer be able to function due to the presence or removal of a tumour. An ABI is therefore suitable for patients whose auditory nerves have been irreversibly damaged.
Attention: Device implantation and tumour removal shall both take place within the same surgery.
MED-EL ABI System Advantages
•Implantable soft silicone matrix with an active 12 point electrode array
•Comprehensive telemetry measurements pre and post surgery
•12 individual stimulation contacts with separate current sources
•Highly sophisticated ABI surgical placement system
Neurofibromatosis Type 2 (NF2) Explained
Neurofibromatosis Type 2 (NF2), also known as Bilateral Acoustic NF (BAN), is a rare genetic disorder that affects approximately 1 in 40,000 individuals. NF2 can either be inherited or occur spontaneously without any apparent familial history. A hallmark of NF2 is the presence of bilateral acoustic neuromas which originate in the vestibular nerve and often invade the adjacent auditory nerve causing progressive hearing loss and ultimately deafness. Auditory Brainstem Implants stimulate the cochlear nucleus (CN) and have the potential to provide NF2 subjects with hearing sensations that assist with sound awareness and communication.
One of my friends posted this on FB this morning. This is how deaf people think about the new (stupid) security measures taken by some banks for their online security. I am reposting on my blog here so you can all share and pass around – hopefully this will get more attention than an email to Head Office – they are NOT listening!!
Pissed off at Halifax online banking, if wishing to transfer money to someone else’s account they now provide a four number code and ring my house and one has to input the code cannot they use text?
I have heard this is happening, I don’t use internet banking, but I would certainly raise it with them and explan that the system discriminates and disables you from using the service… Can’t remember who else said it was an issue for them too.. ??
Lloyds TSB do a similar system
They usually send the code by email and then ring you straight away.You wait for the spiel to finish then key the code in that they sent.
That’s ok if you can hear something on the phone… no good for someone like me..
No but they say wait for about a minute. You can time it roughly!
Ridiculous IMO! LOL whoever thought of it obviously didn’t have deaf awareness training!
Of course it’s ridiculous! Not only that, the minute the code comes through on your laptop, the phone rings. If you are in another room and hear it, you don’t get there on time! If you are deaf, you don’t hear the phone ring!
Yes to everything above its not good enough its not just the deaf what if your old but with poor hearing
I had to do this last night and got my daughter to do the phone for me
Needs to be raised and I will make sure it is
I’m gonna email head office
We get that with LloydsTSB. I have to ask my kids or T to do the phone bit. You’re right, this impacts on HoH too.
I mentioned that some months ago (Halifax too) went to local and London office. They made sympathetic noises but did NOWT. My account got locked so many times because my timing to enter code was always wrong. Now I give up and get my kids to help me. Madness.
It’s supposed to be security – how can it be when we have to rely on others to do it for us?!
Close account move to First Direct i have no issue with transfer money to person account…
I want to be able to go to a bank on high street as well as use internet banking – just my personal preference hence my not transferring to purely internet banks as totally dependant on online access. I want to have a face where I can vent frustrations or whatever at!!
I just go to the bank in the high street, our branch is just round the corner, so I don’t use internet banking… yet!
When deaf people read words, they usually use phonetics to match the word to their voices. Sometimes it doesn’t “sound right” to hearing people. It’s not our fault – blame the English Language!
I came across this poem many years ago – found it among my papers and thought it would be great to add here as an example of why deaf people sometimes struggle with spoken English.
Enjoy!
When the English tongue we speak
Why is “break” not rhymed with “freak”?
Will you tell me why it’s true
We say “Sew” but likewise “few”?
And the maker of a verse
Cannot cap his “Horse” with “worse”
“Beard” sounds not the same as “heard”
“Cord” is different from “Word”.
“Cow” is “cow” but “low” is “Low”
“Shoe” is never rhymed with “foe”
Think of “hose” and “whose” and “lose”
And think of “comb”. “Tomb” and “bomb”
“Doll” and “roll” and “home” and “some”
And since “Pay” is rhymed with “say”
Why not “paid” with “said” I pray?
We have “Blood” and “Food” and “Good”
Wherefore “Done” but “Gone” and “lone”?
Is there any reason known?
And in short it seems to me
Sounds and letters disagree
The Hardest Hit campaign is a petition and protest to the Government to protect the benefits of disabled people across the UK.
The campaign has the following key messages:
Disabled people, those with long-term conditions and their families are being hit hard by cuts to the benefits and services they need to live their lives.
Many are living in fear of cuts to essential benefits including Disability Living Allowance (DLA) and Employment and Support Allowance (ESA). The total cuts will mean an estimated £9 billion* loss to disabled people and their families’ incomes over the next four years, on top of cuts to many local care and support services.
The Hardest Hit campaign, organised jointly by the Disability Benefits Consortium and the UK Disabled People’s Council, brings together individuals and over 50 organisations to send a clear message to the Government: stop these cuts.
You can support the campaign today by writing to your MP, signing up for a Hardest Hit event taking place near you on 22 October or joining our online protest.
I was fortunate enough to be allowed to give a speech for myself and on behalf of deaf people. It’s not often enough that deaf people make their voices heard. Here is a transcript of the speech, it’s not word perfect, but it does the job.
My name is Suzie. I am totally deaf. I don’t mean profoundly, I mean totally. And I have been like this since I was 5 years old from meningitis. I am lucky to be here – Meningitis can and does kill. I have had a cochlear Implant, but it didn’t help me, it gave me noises my brain didn’t know how to handle and to be fair – I can’t really remember being able to hear. I don’t use anything now to “help me hear” I just lipread. ALL the time.
I look very normal. But then I suppose I AM normal. I would feel very offended if I was told I am not. After all I have feelings, thoughts and issues with life the same as everyone else, deaf or normal, they are just labels we are given. There are a LOT of people like me out there – you wouldn’t know it though. There are 10 million deaf people in this country, some coping better than others.
Although I say I’m normal, ….I do feel very disabled. Disabled by the attitudes of society about my deafness and the stereotyping that comes with it. People think I should sign, think they’re helping me by providing a loop system, think that because I am able to lipread I can understand what they are saying. 100%. It doesn’t work like that.
Lipreading is very hard work, it takes an incredible amount of patience, intelligence, concentration and effort to try to work out what is being said. Only 30 % of what you see is actually immediately understood, the rest is guesswork. I often get it wrong. And I often get very tired from doing it all day every waking moment.
I therefore use my Disability living allowance to give me the freedom to pay for communication support. It’s not cheap. I would be lucky to get even 3 hours worth of this support from the monthly allowance I get from the middle rate. If I lost this, I would lose my freedom of choice and participation in society. There is no way I can follow a rally like this without communication support. Or a meeting, or be a volunteer, or to go to work, or to choose whether I go to Yoga or keep fit classes. Or even to go to church. I have to beg and ask all the time for this support, often being told “we can’t afford it” or “sorry we don’t do Lipspeakers or speech to text reporters”. I can’t just decide on a whim I’m going to a networking event to promote my business – I have to plan it weeks in advance to get the support I need. You don’t know what you’re losing when you become deaf. What you hear with a hearing aid or a cochlear implant is not “normal hearing” it’s distorted. You will ALWAYS need to lipread or sign to get the full information when you become deaf.
I have an incredible amount of reliance on others to speak clearly or use communication tactics so I can understand them, you just do not know what it’s like unless you’ve been there. I cannot do it without someone else making an effort too.
I also have reliance on Lettie, my hearing dog to tell me when the doorbell rings or the fire alarm goes or if someone wants me she will come and get me and take me to the person who is calling. The reliance on my quick wits and eyesight to tell me when there is danger, the reliance on others to tell me what I need to know if I haven’t seen something I should have. My Disability Living allowance pays for Lettie’s upkeep and food.
I worry that if deaf people can read or write then under these proposed changes we are deemed “not needy enough to be allowed this Personal independence payment” It is going to make life even more difficult. Who wants to have to carry a pen and paper around with them all the time and have to keep apologising for misunderstanding through no fault of their own?. How can we be expected to think about how often we communicate and….. horrors of horrors – to describe how much help we need when communication happens all the time when you’re awake? Deafness is isolating, a barrier to full participation in society and costs money to live with.
I call upon the Government to ensure I, and the millions of other deaf people like me, do not lose our independence and freedom of communication as a result of these changes to Disability Living allowance. And to recognise that access to communication is a daily function, freedom and right that EVERYONE is entitled to, no matter how much it costs.
Way back in the 1990′s – when I got my Cochlear implant, I started writing a diary. I had been totally deaf from the age of 5 through meningitis.
This became a blueprint for a book I was going to publish. Things happen in life, I got distracted, as you do when you have work, a home and teenagers to deal with ….. and so I stopped writing it . (For a while… maybe I should go back to it one day when I’m old and grey and retired? it’s on a floppy now, so I’ll have to get a nice person to put it into a CD format).
But there are certain things in this narrative that I produced I would like to share with you. Some of it is quite emotional. I don’t have time to publish and these things need to be said to raise deaf awareness and make people realise what they are missing by not going on these courses to learn about deaf and deafblind people and how they see life treating them. I am so happy to see Blogs now – and I think Blogs are probably as good to read as a book.
I don’t wear my CI now. I can’t hear words with it. it gives me “white noise” and makes me confused when I’m trying to lipread. I can’t tell which noises are high pitch and which ones are low. A bit like Edward Scissorhands trying to pick up a pea. And a bit like dealing with constant tinnitus that stops you from concentrating. I don’t for one second want to say that Cochlear implants don’t work, they do. They give such a relieving support to many many deafened people, they are absolutely wonderful to those who are lucky enough to hear birds chirriping, water bubbling down a brook, leaves rustling and some can even hear a familiar voice on the telephone once again. Some people regain their enjoyment of listening to music, being able to hear when the doorbell rings, being able to support poor lipreading with sound. I think Cochlear Implants, for those who used to be hearing, like me, are a marvel of technology and we are all so very lucky to be given the opportunity to be able to hear again, when not so long ago if we became deaf, that was it.
Anyway, here’s what it’s like to live and communicate in constant silence. If you have hearing, you will never be able to “see” this world until your hearing has gone. It is impossible to find a place where there is complete silence, until you’re deaf. A little bit of silence, they say, is golden. Total silence is not. Total silence was not my aim in life when I was born.
Total silence is an impenetrable bubble that cuts you off from sound or the feelings of sound. You can hear nothing. No sound. No emotional contact to help you determine what environment you are in. You cannot understand why some people have to tell you to “Speak up” because the background noise is so loud and you cannot see what is making that noise. it may be a siren going off, traffic out of sight, a pneumatic drill round the corner,even, or a loud background whine you are oblivious to. Your expression of emotion needs another channel to cope with the dead, solemn stillness loss of sound subjects you to. You no longer know how people are intending you to decipher their moods by the intonation of their speech.
“MY dog is at home” means you are reinforcing the fact the dog is yours when the “MY” is a lower pitch. If you said it another way such as “My dog is at HOME” you mean you know for certain your dog is at home. Yet another way, if you allowed the “home” to trail to a higher pitch it would mean you are asking a question and querying whether your dog is at home or not. Again, if you simply stated a monotone “my dog is at home” you are just stating a fact that’s not too important.
All this is gone when you lose your hearing. You lose a feeling of where you are in the world. You also lose your perception of the language of sound and the complicated interconnecting threads that are so important for successful communication between people. You become insecure and depressed. You do not understand why you feel that way. You miss your footing and stumble over words each time you open your mouth because you can’t hear your own voice anymore. You start to express yourself visually. You begin to demonstrate primary emotions on your face. You screw your eyes up when frustrated, raise your eyebrows when you are asking a question, purse your lips down when you are sad or disapproving and beam when you are happy. You can no longer control your voice, you start to shout at the wrong time, or when you want to make a point, and you only lower your voice when you intend to whisper. You are beginning to be told how to say things, and frustration creeps in. You shout “MY” dog is a home to emphasise the “my” by loudness rather than pitch. You shout “home” for the certainity you know the dog is there and you are never understood when you try to make a question out of a monotone. Those who are listening start to struggle to follow you without watching your face and expressions. Your voice changes through no fault of your own and this is not always recognised. Eventually the link between loudness and pitch finally severs and you are on your way to becoming a real deaf person….
Copyright Suzie Jones (written around 1999).
It’s not surprising then, is it, that if you were once hearing, you lose your confidence and people don’t understand why. Next time you have a free moment to go on a deaf awareness Communication tactics course, do take it – you’ll help not just yourself when you become deaf, but everyone else too. who is in this boat.
Before you read this – remember the vast majority of people in old people’s homes are likely to be deaf, or deafblind….. Make sure you know how to communicate effectively if you are working in a care setting. Disabled people once had a life, you know, just like you and me.
I hate that you should call me “Dear”, And say “How are we today”,
In that insincere and patronising voice.
I am a person, not a pet, I understand, there is no need to stroke me.
I hate the way you used my Christian name, Before you even asked or knew me.
I do not want to be another Lucy, Jane or Emma, A nonentity in a crowd of first named women.
I am Mrs Brown and proud to bear his name.
Perhaps when I have chosen my first few friends, We can embark upon a closer understanding.
Beneath those shabby genteel clothes, I am an entity.
That has been built up year by year, By joys and sorrows, work and play,
Responsibility, experience, love.
I am the little girl who wandered in the primrose wood.
I am the girl whose French was always weak, but passed exams, Who loved Geography, and wallowed in a world of words.
I am the student whose college days were rich, with friends’ philosophy, ideals new thoughts.
I am the woman who was wife and mother, Who knew the splendour of a family bound with love.
But also knew the heartbreak and the passing from baby wants to teenage needs and pressures.
Of loss of irreplacable companion.
I am the traveller, who slept on mountain tops, who braved the Arctic seas of the North Cape.
I am the wife who loved to cook and clean, whose house was filled with friends who came,
I had to find a qualified interpreter today so I could contact my telephone and internet service provider to ask them why my phone bill has gone up from £20 per month on average to £64 last month and £73 so far this month.
I make approximately three calls per month using my text phone with the prefix 18001. The costs have trebled without warning since July. I contacted PlusNet and they said they have advertised the changes on their website, which I was not aware of and I have not been able to find the important information. Their website is very difficult to navigate and it makes it hard to find what you want. PlusNet informed me that Ofcom changed the classification of relayed calls and that is why they are now at a higher rate.
What this effectively means is that the ISP is now in a position to start charging deaf consumers over £1 a minute for Typetalk/Text Direct relay services. I have not been able to find any information about the changes being implemented by Ofcom since July 2011. This is clearly a case of discrimination. As you will know, making a call via a text relay service takes three times as long as a call made directly.
With no hope of getting a full refund for the costs of these extortionate charges, the technical support department at PlusNet advised me to send a letter of complaint to PlusNet via their online members’ page and a second letter of complaint to Ofcom. With the help of my interpreter, I have now fired off a letter of complaint to PlusNet and I will be forwarding a copy of this to several other sources, lobbying Ofcom, Watchdog and See Hear to name just a few.
I am hoping for reimbursements of the extortionate charges paid to date. If other people find themselves in the same situation then you must complain and together we can lobby against the powers that be. Do they really think it’s okay to charge deaf consumers over £1 per minute for making a phone call?!
Liz Brown
To be deafblind – no hearing, no sight – wonder if they know what’s happening around them?
Surely deafblind people have lots of help, don’t they?
They must be living in sheltered housing where everything is provided, ah poor souls, I feel sorry for them, but there’s nothing I can do.
Suppose they must be grateful for that.
I couldn’t imagine how they would be able to communicate if they can’t see or hear anything!
I never met a deafblind person so if I see one, perhaps I’ll leave it to their companion or carer to support them, after all it’s their job not mine isn’t it?
They wouldn’t go out on their own anyway, goodness sake, how can they find their way around? Let alone conduct their day to day affairs, like keeping up with the news, dealing with their finances, knowing who is at the door, getting their shopping, going out, taking part in life activities….
There can’t be that many deafblind people…..
Or are there?
Ok well let’s explore these feelings about deafblind people.
It is important that as we become aware of our own positive and negative feelings towards deafblind people,deaf and disabled people in general, our attitudes to them as people first bears a strong connection to our willingness and ability to communicate and accept others around us successfully.
The first step we need to take is to overcome these feelings of inadequacy or embarrassment. After all the most important thing you will learn here is that there are lots of deafblind people.
And the second most important thing is it’s extremely rare to be totally blind and totally deaf. Most deafblind people have some useful hearing or sight, which they will utilise to communicate and get around with.
You probably have met one, only you didn’t know you had. And that person may be unaware or in denial that they are deafblind too.
Blindness cuts you off from things… deafness cuts you off from people (Helen Keller)
Communication is the most important thing a human being needs, apart from water, food, and shelter. With communication, you can transmit your needs, your wants, your feelings, your opinions and most of all you can share life. People were never intended to live alone, we already know the mental health effects – physically, mentally and spiritually of solitary exclusion from others.
But the fear of talking to someone who can’t see you and can’t hear you may fill you with dread. You may worry they won’t understand you. Leaving you with the responsibility of starting a conversation, and having to keep it going… not only that but wondering if you’re understood, or even more, feeling apprehensive about entering someone else’s “private space”. This means touching someone, but for deafblind people, touch is the most important sense they have left.
These are perfectly natural barriers. Our one day course will help you understand how to break these barriers down and hopefully you will have the knowledge and confidence to communicate effectively with any deaf or deafblind person you may meet in your life from this point onwards. It will probably have the knock on effect of making you think about deaf people too, after all we’re talking about communication barriers here, and the issues are similar as you are about to discover.
Many people who have a dual sensory loss or are ‘deafblind’ are not identified as so. The largest group of people who fall into this category are elderly and they rely on their residual sight and/or hearing. They may have a hearing loss related to old age called presbyacusis. This, together with failing eyesight, that we all know happens, leads to what is called acquired deafblindness. There are possibly about 2 million people in the UK with this dual sensory loss.
People, who experience hearing loss, broadly speaking, fall into two categories and both can become blind at any time.
Firstly there are those who were born Deaf or became Deaf in early childhood. They are likely to use British Sign Language (BSL) as their first language and usually mix with others like themselves. This is called the Deaf community. They are very proud of their language, their history and their cultural heritage and this is indicated by the capital D in “Deaf”. Using BSL is a visual means of communication. It doesn’t mean they are using a rough mixture of primitive gestures and grimaces. Far from it. BSL is a rich language with a grammar a syntax just like English, or Welsh or French even. BSL does not follow English word order. It wouldn’t “look” right. For example if I was to talk about a greenhouse. If I tried to sign green then house, it would mean a house that is green wouldn’t it? Because you’re saying green first. But it still wouldn’t mean a greenhouse as English means it to be. The proper sign would be house glass. This means you are describing a house made of glass. Deaf people who use BSL and become blind will usually communicate by hands-on BSL – feeling the signs someone else is making with their own hands. Some may have enough residual sight to see the BSL, usually within the field of remaining vision. This is Visual Frame BSL. You can see it here: (Many Thanks to Nick Sturley for permission to post here)
Secondly there are those people who lose their hearing after learning to speak. Many people become deaf after illness, accidents,exposure to loud noise or just getting older. By and far, the largest number of deaf people fall in this category. There is a taboo about communicating with deaf people. This is based on ignorance and stereotyping. People think all deaf people sign, because that’s the part of the disability that’s highly visible – a bit like knowing someone is disabled because they have a wheelchair – and therefore they can’t speak… leading to the misconception that they can’t communicate. This is not true. By and large the majority of deaf people use hearing aids and speech with some lipreading. Some deaf people are so embarrassed by the fact they are deaf because of this taboo that they will do everything to hide the deafness. Even to the point where they will appear to be following the conversation when in actual fact they are completely lost. You will only realise this when you ask them a direct question and the reply is totally out of context, leaving you bewildered and embarrassed. It doesn’t need to be like this. This group of deaf people who become blind will use as much of their residual hearing as possible, supplementing it with lipreading and possibly some deafblind manual alphabet.
If you would like to keep up to date with Molly and her new guide dog, click on this link http://www.mollywatt.com
Deafblind Manual Alphabet
We must not forget blind people either. There are those who are born blind and grow up knowing life as a blind person. They are very skilled at knowing how to get out and about. They may use a cane, a guide dog, or even GPS satellite systems to get around. Sometimes all three. They may be skilled in Braille, and make use of audio books and newspapers. They are likely to be comfortable talking to people as a having full hearing they would not have any communication barriers. Think of some famous people who are blind.. such as David Blunkett for example. Compared with deaf people, it’s unlikely you would find a deaf person in high office. I wonder why?. Going back to blind people, the main thing that they would not have access to are objects and things – unless they knew where they were, or if they were labelled in Braille. For example some medicine packets have Braille on them…… This group are likely to use deafblind manual alphabet too, some can use it with shortforms relating to Braille shortforms, or even “finger braille” a method of using fingers to communicate in braille, sometimes on the wrist.
So when you add it all up, hearing, deaf and blind people are all just as likely to become deafblind as you or me.
Each and every deafblind person is different. And all communicate in different ways.
It all depends on which of the two senses are lost first. Chances are, you’ll lose one of them as you get older, and possibly both. Think about it. And next time you meet a deafblind person, do communicate with them. I am sure they will have lots and lots to talk about!
If you would like a one day deafblind awareness course that teaches you how to communicate and guide deafblind people, do get in touch http://www.deafcomm.co.uk
I’ve been watching how the music industry don’t seem to think deaf people listen to their wares… and that we are only really interested, maybe, in how loud it is, or how much “beat” it has got. How wrong they are. We all wish that they would subtitle what they produce, so we can enjoy it too.
How can deaf people enjoy music?
I learned all about music at school, at Mary Hare, where I played the recorder, guitar and keyboard. I have had no hearing at all since I was 5. Not being able to hear music is not a barrier to learning an instrument. The difficulty is you have to use your eyes to read the score and the same eyes to use the instrument. You have to learn how much breath to blow through the instrument to create the right note, too hard and it’s high, too soft and it’s low. Or how hard to pluck the strings (and which ones), and how tight to hold them on the neck for a guitar. It’s not easy. Once you have discovered how many beats to a bar, and how fast the beat goes,and how many notes needed per beat or how long to hold a chord for, you can fly.
There are several ways deaf people may perceive music, I do not profess to be an expert on others’ enjoyment of music – so please do correct me if I have misunderstood.
1) Deaf people can learn to play an instrument. Learning an instrument introduces deaf people to how music is put together and how the melody mixes with the beat and the rhythm. Learning to play an instrument gives you a feeling of being at one with what (little) you are hearing. I link the melody to the words, each note is part of a word that has a level of pitch that gives me an idea of how the emotion fits the sound to the word.
Me aged 18 when we played “Happy Birthday” for Lorin Maazel’s 50th birthday with Beethoven trust (Ann Rachlin and Prince Charles).
2) People who become deaf can remember when they used to hear – most deafened people who have a CI have an auditory memory of sound – they will remember what they used to hear. I have been told that what tunes you remember sound better when there is a memory of them. So deafened people with a CI are likely to love the “golden oldies”, the music they heard before they lost their hearing:
3) Some deaf people, especially those deaf from birth are intrigued about what music means to hearing people, They question what it actually is that makes hearing people go all loopy at the sound of a favourite tune. Born Deaf people are likely to go for those songs with lyrics which have a meaning. This one, cleverly shows some emotion intended in the BBC original for Perfect day.
4) Some deaf people have listened to music all their lives, and live and breathe it like hearing people do. They would be attracted by embedded words into the songs, or as here, by lipreading along with listening.
5) Some deaf people really haven’t a clue and just follow the crowd – and prefer to watch the BSL - again, the lyrics will be important because they are following a “story” or “poem” The actual music itself would not be as important as the language access.
So feeling vibrations, seeing the videos (preferably with a face that can be lipread and with subtitles), watching someone doing it in BSL for BSL users and playing yourself can all give deaf people an appreciation of music.
I have no intention of breaching any copyright or whatever in posting up these you tube videos. I apologise if I have. They are posted simply for educational purposes and to highlight how important making such videos with subtitles are to deaf people. We DO like music too, don’t exclude us, but remember – who is your audience? and how are you making the music accessible to the 10 million of us in the UK who do not hear the music as well as you do?
Right, this is the actual event of what has happened today (Monday 22nd August 2010) of my trip to the HMRC Office in Norwich which ended with almost bad experience for me.
I needed to make a claim on the HMRC website, but at the moment, it’s not available to do it online as the site says “These online services are still temporarily closed”.
And the website says that I can pick up the paperwork at either HMRC Enquiry Centre or Jobcentre Plus Office.
After looking up the address and mapping the route on Google Maps, I decided to go to the Jobcentre Plus Office as the office was the most closest to walk from work.
Lunchtime came, so I head over to Jobcentre Plus Office and asked one of the guy using paper & pen to see if they have the paperwork/pack. He said they do not have anything I needed and advised me to use the telephone service. It took him about 2 or 3 seconds before he realised I cannot do that. Then he went off & spoke to someone else. He came back and advised me to go to the HMRC Enquiry Centre. I thanked him for his help and left the building.
Walked over to the HMRC Enquiry Centre and was greeted by a member of staff. Again, using paper & pen, I asked for the paperwork/pack. Once again, she told me to use the telephone service. Only that she did not realise and I had to point out that I am deaf and cannot use it. All of sudden, she was a bit panicky, didn’t know what to say. She told me to wait while she went into the manager’s office to have a chat.
She came back and said that I could contact the office using textphone. I told her I did not have one at home or at work. Then she said I would have to make an appointment to see someone just to get the pack. Huh? She invited me to her desk and she looked at the calendar to try to find a free date for me. All different dates were offered, I’m busy on these dates.
During that time, the other member of staff led other people to the desk where I was sitting down and they looked fed up because we were communicating by paper & pen. I thought it were rude for the staff to put their customers next to me. Where’s my privacy?
At this time, the manager came over and they both discussed what other options are. They told me to come back in a few hours time and they can do an appointment for me on the same day. No I cannot was my reply, because I have to go back to work.
All I wanted to do is to collect the pack and go back to work. That’s all.
But no, I have to see someone just to get the pack. And that I need to show them 2 forms of ID – i.e. my driving licence and a passport. Nowhere on their website states that I need them to pick up the pack. Hum ho…
All of sudden, the manager/the lady (can’t remember who said first) said they have a textphone in one of their office that I could use to call HMRC to get the pack posted to me. What? After all of this faffing about which lasted 10 minutes or so, they say it now? Why not say that at the first place?
They told me to wait in the other room. On the corner of my eye, I can see them rushing around like headless chicken, trying to figure out how to get the textphone equipment to be set up & work. I guess they rarely take it out…
The manager asked for my NI number and I gave him my NI card. While waiting, it dawned on me… why did the staff ask me for 2 forms of IDs just to get the pack, when I can get the pack over the phone (or even online when it’s available) without them asking me for any forms of IDs? Do you see the flaw in this?
Anyway, after a while of wait, they lead me to the other room where there’s a textphone and a keyboard attached to it. She read the user guide carefully (it has words and picture showing what to do). She followed the guide but somehow the text phone did not work. She tried again but still not working.
I looked at the guide and found that she was doing it wrong. I pointed it out to her (the photo showed very clearly how, but she didn’t follow that). To her credit, she quickly corrected it and it worked this time.
It rang. It connected to Text Relay. Then it connected to the number that she dialled. It went through the options. I picked the option I wanted to use. And it put me on hold. Knowing what HMRC is like, I knew it will be a long hold. And we waited.
During that time, the manager kept coming back and checking up on us, seeing if we’ve made any progress with the phone call. But we were still on hold.
And holding…. holding…. holding… holding…. holding for a long time.
The manager came back for the final time and asked me some questions on paper and I answered his questions. He decided that the phone call is not needed. He asked for my DOB, my address and my employment details. I provided them to him.
And I got the pack.
Finally.
I was happy that I got the pack finally, but at the same time, I was thinking – why did I have to go through all of that? It has left me very tired, very frustrated and annoyed that I have wasted a lot of time doing that when it can be easily resolved right at the start. Overall, I think this has taken me about 50 minutes from the start to the finish.
I finally walked back to work and it was almost 2 hours (20 mins round walking trip) since I left for my lunch break when it could have been easily resolved within 30 – 40 minutes!
I feel I was lucky that I was able to do this as I was able to communicate with them via paper & pen & using English language, but what about other Deaf people who are very strong BSL and is unable to do a proper English structure to communicate with them – will they be able to do this and have the issue resolved like me? My honest answer – I don’t think so. I fear they will just say no and let them go on their way, which sadly does happen now and then.
Yes, they did provide me with a textphone, but please do it at the start without having for me to go through all of this faffing around. Their website also needs to be very clear that I need to bring some sort of other documents before I turn up.
To end this, I’d like to say a big thank you to the HMRC staff in Norwich (if you’re reading this) – to the manager and the lady who sat down with me when we were making the phone call. Thank you for understanding and for being patient with me.
Anyway, that’s my write up of my trip to the HMRC Office in Norwich and my experience with them.
RT @peskypeople: @UKTesco How do you deal with complaints when a #deaf person w/ hearing dog is screamed + swore at by another customer? (S… 4 days ago
