Deaf awareness continues… September events

We are planning another two events in Birkenhead and Preston on the first week of September. You can contact me with any queries or to book your place on suzie.jones@deafcomm.co.uk

A full day session from 9.30 to 4pm, with refreshments included. Participants will receive a certificate of attendance and booklet.

We will be discovering:

  • Just how many people are deaf and how to reduce discrimination;
  • Lots of different Communication Skills and Tactics that can be used to help make your business services accessible to ALL deaf people;
  • Stereotyping, Terminology and Discrimination;
  • Technology that can make your businesses accessible and how to use it;
  • How to book and use Communication support professionals for different communication preferences, both for deaf English users and BSL users.

You will have opportunities to gain advice and support as well as having a go at being deaf yourself, so you will understand more fully the impact of deafness on mental health and attitudes.

We hope you will join us for what is promised to be a fun, educational and informative day.

This course is excellent value at an price of £50 per person. 

Preston event 8 September 2011:

http://deafawarenesspreston.eventbrite.com/

Hurry, places are limited and likely to go fast.

http://www.deafcomm.co.uk 

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Communication skills and tactics for deaf and deafblind people.

Been a while since I blogged, thought I’d better do an update.

Suzie and David are both deaf. We work as a team, together with our hearing dog, all around the UK, delivering both deaf awareness and communication skills training for everyone from the young to the old, the professionals to the man in the street.

Last week, we ran a deafblind awareness day, training a mixture of older people, visually impaired people, deaf and hearing. The aim was to encourage people to volunteer to become “buddies” for those who are isolated in their own homes due to age related deafblindness. We also found that the information is useful for those who are just coming out and learning how to deal with deafness.

This particular group of older deafblind people are not as well known as they should be. You can’t hear so well, and you can’t see so well, they need support in maintaining independence and living a meaningful life.  They don’t need pity – they need someone to go round to support them with their mail, perhaps go shopping, have a chat or even someone to guide them to the local pub.  Deafblindness means you have issues with access to information, communication and mobility.  Life doesn’t stop when you become deafblind.

Many people think it’s impossible to talk to deafblind people, this isn’t true.  There are so many tactics to use and learn, and we teach these in our deafblind courses. In fact, what’s suitable for older deafblind people is also very suitable for older (and younger!) deaf people too.

Let’s have a quick look at the statistics, before we go further…

55% of people over 60 years old are deaf or hard of hearing.  That’s about 8-9 million in the UK, and of these, half will be struggling with getting accustomed to hearing aids, and the other half will have given up, shoved them in a drawer or not even taken any steps to have a hearing test.

Of this age group, 1 in 6 will also have a visual impairment.

It is more likely people will go to the local charities dealing with blindness; there is nowhere to go if you are deaf. (unless you know of a great lipreading class down the road, and have enough money to pay for it!)

So here we were delivering this training.  They did a survey of all their 1800 members who were visually impaired. The results were astonishing, 1200 of them admitted to having a hearing loss on top of the visual impairment. This means, statistically, there could be as many as 5 million older people with acquired age related deafblindness.

Our courses are different. We don’t just talk about our rich life experiences of being deaf and being discriminated against daily, we talk about solutions, ideas, and challenging stereotypes leading to this taboo subject of deafness, especially among those who have become deaf after being a hearing person all their lives. We also put you in our shoes, let you have a listen to what it’s like when using a hearing aid, how the environment can affect communication – and of course we let you have a go at finding out about lipreading, why it’s difficult, and how important it is for family, friends and colleagues to understand why some deaf people hide their deafness.  You’ll come away with a whole new understanding of deafness, and deafblindness –  and gain some valuable communication skills as well.

If you would like to know more about all the different courses we offer, go and have a look on our website:
www.deafcomm.co.uk

You can find out more about the “Silver dreams – In good Hands project here:
http://www.in-good-hands.org/

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Wake up BT you can’t support Deaf people – or can you? prove it!

here is a simple selection of chat messages I have had with BT since a friend’s new broadband connection failed. It is impossible for them to understand we cannot communicate with them other than SMS or through a friend when there are no hearing people in the equation – SO frustrating – this needs to be rectified.

Names have been changed to xxx for the person and yyy for the BT agent on chat.

Sent /  recieved on Monday 1 Oct:

YYY Hello. I’m YYY . Thanks for that information, I’ll check it and get back to you in a moment.
XXX: hi there – I am deaf and need lots of help!
YYY: XXX, is that your broadband do not work
XXX: yes – you are talking to Suzie – who set up everything for XXX- he has been going frantic because he can’t talk to you – can you text him on 0123456789
XXX: he can’t use phone, can’t get to emails, can’t get on web so can’t get any info
YYY: This seems to be a bit out of scope for me, I feel I should let the tech experts handle this for you
YYYhas disconnected.
YYY 222 : Hello. I’m YYY222. Thanks for that information, I’ll check it and get back to you in a moment.
YYY222: Hi XXX!
YYY222: How may I help you today?
XXX: hi I am on another computer, I can’t get on anything and I am deaf, there is a fault on my line, can you keep me up to date by sms text as I am completely lost
XXX: I can’t use the phone, so you can’t phone me to keep me up to date you see
YYY222: Does your broadband and telephone not work?
XXX: broadband is not working, has not been working for 4 days – I am a new customer
XXX: the fault was reported by my friend’s dad who is hearing and it is (code for fault report)
YYY222: Would you like me to do a line test for you?
XXX: you can’t do it from here, I am at another address… yes please from my home
YYY222: Could I have your home telephone number please?
XXX: 123456789
YYY222: Alright let me check the details for you now
XXX: cheers
YYY222: :o)
XXX: There is no telephone on the line – just the hub  – I do not have a telephone
YYY222: Alright XXXI can see that your case is currently being dealt by the Network Faults Engineering Team at present
XXX: can you ask them to text me when it’s sorted? I can’t get online at home
XXX: my number is 123456789
YYY222: The Engineering Team does not text the customers as they deal with important issues and it is very important that they talk, could you give me some one elses number so that they can speak
XXX: no – there are no hearing people at home. I do not have anyone to do that  – you are gonna have to make an exception, or send someone round to see me face to face
YYY222: Alright I will post this to them so that they work accordingly
XXX: thanks – we are all desperate – we are all deaf trying to sort this out  – it’s very very hard
XXX: I am very upset – I think this is going to happen all the time
YYY222: I understand do not worry all will be sorted
XXX: ok – so they will text me on 123456789? or come round? – if they come round, they need to text me to let me know anyway

YYY222: They might also send someone
XXX: that would probably be the best way to deal – tell them to text 123456789 to make sure I am there
YYY222: I will paste this entire transcript to them so that they can read this and understand your problem
XXX: thank you very much 🙂 Appreciate it a lot. cheerio for now – how long do you think they will be in sorting it?
YYY222: It will be done urgently do not worry
XXX: ok cheers and thank you bye for now
YYY222: Thanks for contacting BT.. Have a nice day.. Take Care.. Bye..

we waited…. and waited… nothing, so here comes chat no.2 Tues 2nd Oct..

YYYi: Hello. I’m YYY. Thanks for that information, I’ll check it and get back to you in a moment.
XXX: hi thanks
YYYti: Hello let me check that for you
XXX They keep ringing on my mobile – I can’t answer it I am deaf
YYY: OK
YYY: Please bear with me
XXX: ok
YYYi: Still checking
XXX: I told you this yesterday – this is not good service to deaf customers is it, I have the transcript from yesterday too – you said not to worry and you’d sort it – now been over 28 hours since you said it – Thanks for checking
YYY: Welcome. I am sorry again for troubles
XXX: not your fault, I don’t shoot messengers!
YYY: XXX what is the status of the hub lights now?
XXX : hang on – I need text to see as  there is no connection there and this is another broadband line…
YYYi: OK
XXX: Earlier it was flashing orange, has been for last 5 days
XXX (waiting for response (sms)
YYYi: OK
XXX: same orange flashing,,, then off,,, then flashing again…
YYY: Ok
YYY: Could you please restart the hub?
XXX: texting… hang on
YYY: OK
XXX: this is gonna be slow, cos I have to text instructions, then wait for text back with response… (joys of being deaf!)
XXX: Ding it now… I told him to wait 10 sec before switching on again…
YYY Yes. Is there any one who can help you ………….so that we can transfer the call to our level 2 support
XXX: no – we’re ALL deaf, that’s why we’re finding it so hard!
XXX: you really need send someone out 1:1 chat – can’t use phone
YYY: Please bear with me
XXX: that’s fine, we’re all used to being let down and this hassle cos of reliance on telephony
XXX: Power and Wifi both blue – Broadband (middle light) still flashing orange
YYYi: XXX already the issue has been escalated to our level 2 support. They are dealing with it.It will be fixed as soon as  possible.
XXX: how will we know though 😦
YYYi: You will get an text sms on your mobile number. Is that your mobile 123456789?
XXX: they keep ringing  yes 123456789
xxx: ok thanks – suppose we have to wait?
XXX: Suggest you ask them to sms xxx directly so I don’t have to be middle person – he has no broadband to contact you you see
YYYi: Yes
XXX: he says he doesn’t want to pay for engineer call out?? where did that come from?
XXX: it’s not our fault we can’t communicate
YYYi: Our level 2 support will tell him the update. Now they are dealing with that.
XXX: ok so I can leave and hopefully they will sort it with him via sms? he’s upset
YYY: It will no worries
XXXe: ok thanks bye for now 😀
YYY: Welcome

ok now we think we’re getting somewhere….

Laters…

YYY: Hello. I’m YYY Thanks for that information, I’ll check it and get back to you in a moment.
YYY: hi XXX
XXX: hi there
YYY: XXX, please can i have your mobile number please? so that i can call you and run the test on the line
XXX: still having issues – 3rd time I’ve been on chat – the engineers keep ringing my phone, I can’t HEAR on it – I need SMS as I’m deaf – can you pass this message on? it’s the ONLY way we can talk to you
XXX: you CANNOT call me, I am DEAF
YYY: sorry to hear that
YYY: let me check it for you
XXX: my mobile is123456789 please do NOT ring it – use sms
YYY: XXX, please give me few moment i am running test on the link
XXX: which link?
YYY: i am sorry line*
XXX it has already been escalated to level 2
XXX: they keep ringing,  – no good, can’t hear on mobile – need sms – how many times do they need to be told?
YYY: This is to be read verbatim on EVERY call where an engineer visit is required
• “Before I can send an Openreach engineer out, I have to read you a mandatory statement to inform you of any possible charges associated with an Openreach engineers visit.
YYY: • We may charge you £130 for an engineer visit if:
– The fault is found on equipment connected to or interfering with the line
– The network has been damaged within the boundary of your property (for example someone has run a vacuum cleaner into the socket or a hedge trimmer through the line outside)
– No fault is found”

XXX: well you cannot charge me cos I cannot talk to you – if you sms then it can get sorted. It’s bordering on discrimination
XXX: I am a new customer, the line has just been put in!!!
YYY: XXX, if there is fault in your house then only you will charge other wise no
XXX: well I am on benefits and can’t afford it
YYY: i am ready to send engineer to check for you
XXX: it is a brand new line!
XXX: I can’t authorise it
XXX: I will have to text the instructions you have given me
YYY: ok if not i will raise this case to engineer but it will take 72 hours
YYY: for that you wont charge
XXX: well this case has been going on for more than 72 hours cos you won’t sms me!
YYY: yes i can see that, you’re case is open till now
YYY: How ever dont worry i will take care of it
XXX: ok thank you – what are you doing now?
YYY: i will make sure that you’re fault will get done as fast as possible
XXX: thank you – and don’t ring the mobile please – use sms
XXX: I have full records of all the chat, just so BT know – this is a case where they can certainly improve their customer service
XXX: for deaf people. thanks for pushing it to get sorted. cheerio for now.

Been away for 2 days – still nothing, no texts, no engineer round …. so time to get cross… BT management, you should be ashamed!!!

YYY: Hello. I’m YYYi. Thanks for that information, I’ll check it and get back to you in a moment.
XXX: Hiya
YYY: Hi XXX
YYYi: I am sorry for the trouble.
YYY Do you use bt hme hub?
XXX: I have had enough of customer help with BT you cannot – I mean CANNOT get it we are all deaf and we have waited and waited for a response  – you can’t help us!
XXX: yes problems with the connection – it’s a new one  – I am the only person who can get through – I am speaking for XXX cos he can’t even see any messages you leave on his My BT – cos he can’t get online. He can’t hear on a phone, he does not have one, and he can’t hear on a mobile – you have promised to text him on 3 separate occassions (I have the chat transcripts) and you have not contacted him AT ALL.
XXX: something about a delcaration that the engineers have to say to get out of turning up and having to pay a £130 fee for engineer to come – well this is discrimination agianst deaf people – we CANNOT GET IN TOUCH ANY OTHER WAY!!!
XXX: it’s been over a week and you say if we wait 72 hours (which is less than a week) you will send one out free of charge – so what are you lot playing at?
XXX: I want it SORTED TODAY and I want you to send someone out no fuss, no charge to go and see him face to face and put his mind at rest. I will escalate this to the complaints dept as a discrimination case if you do not.
YYYi: Let em chck
YYY: Ok
YYYi:  May i know your name please?
XXX: I’m Suzie Jones – I helped XXX set up the whole package at the beginning because he’s not confident cos of his deafness
YYYi: OK
XXX: hence my email is on everything, everything that comes from BT is coming via me, so I can teach him how to use it
XXX: I’m deaf too BTW
YYY: Have you done all the checks with phone sockets and filters
XXX: I have asked him to open the socket – he freaked and he looked and then got scared – simply cos he can’t see the video on the BT website – I’ve had to explain via text message as well,  – you can’t do this cos he can’t hear instructions, doing by sms is very very difficult.
XXX: I don’t think he saw the “master” socket… so you’re gonna have to make an exception in this case – really are – cos if I go round and try it, I still wouldn’t be able to chat to you, I’d have to come home on chat and then tell you – he’s 40 mins drive from me
XXX: because he’s got no conneection
YYY: Ok
XXX: do you get it now? how hard it is?
YYY: Let me check
XXX: Instead of checking, why don’t you just tell the engineer to go round and sort it all – it’s the logical solution  – this really isn’t working is it? and you CANNOT charge him cos this is a complete farce, you need to have some system in place to react for those who can’t hear on the phone and when the broadband crashes is completely helpless. I mean completely helpless, because there is no other way to contact you when that happens… he has no phone, no minicom (it’s a new line) and is otherwise completely reliant on sms messaging – which you seem incapable of understanding. There are no “hearing people” around he’s on his own, and even suggesting getting a hearing person to do it is a failure on your part to make your services accessible
YYY: Let me tell you one thing i am from the level 1 support. I do not have the authority to send you an engineer right away. If i send an engineer and there is a fault inside your home then it will be chargeable and if there is any network fault it will be free.
XXX: I know that, I’ve been told that – and I’ve been told that if you wait 72 hours then the charge will be waived. however it’s a new line, and so what are we expected to do? if we can’t hear instructions on how to sort it, then of course you’ll have to go round face to face or use SMS – which you can’t even do. so please YYY, get your manager to authorise the attendance of an engineer free of charge and to speak to him face to face – this is not a run of the mill case
YYY: I am sending you one link which will help you to check the equipments
XXX: that won’t work!!! I ‘d have to sms how to do it to him, then wait for a response, it’s no good, I’ve tried that
YYYi: What do you want me to do now?
XXX: I know it’s been escalated to level 2 support anyway – but level 2 support haven’t contacted him
XXX: I really don’t know what else can be done other than tell your manager to sort it – if you don’t have the authority to do it he should
XXX: XXX can’t even ring 151! ha ha ha ha
XXX: xxxcan’t even send you an email to explain what his problems are…..!!
XXX: He CAN text you – but you’ve not given a text nummber at any time – that’s the missing link – nd your engineers won’t text
YYY: Please give me a moment please I am checking
XXX: I’m gonna put this on social media – for everyone to see – we’re not the only ones who have problems when there is reliance on telephony – believe me this is gonna go further if you can’t get someone to communicate with XXX – he should not be penalised for your lack of access to information.
XXX: I have to go to work, been on here arguing – or making sure that BT understand our issues and frustrations. – for over an hour (including waiting for an advisor
YYY You will get the update on text messages
XXX to XXX?
YYY: Yes
YYY: And our relavent dep will do needful to solve this issue.
XXX: thanks… and my mobile is 123456789 if you need me to step in and help
xxx: ok thank you. if he’s not back online, I’ll be back when I’m back from work. (sorry YYY, it’s not you I’m cross with, it’s the system)
YYY: Welcome
XXX: bye bye

nothing has been solved since, NO sms has been recieved, no email either – no w BT – how are you gonna respond to this? dated 5 Oct 2012.

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Having a CI? Won’t work for you – have a read of this…

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.

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Banks… Beware! You are discriminating….. (again!)

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!
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Our Queer Language (and some homophenes for you!)

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

(Author unknown)

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Hardest Hit speech given in Manchester on 22nd Oct 2011

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:

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. Find out more and register for an event near you at www.hardesthit.org.uk.  Join the conversation at www.facebook.com/thehardesthit or using #hardesthit on Twitter.

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.

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Why do deaf people “sound funny”?

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.

 

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Lament of a new resident in an old people’s house

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,

to talk, to walk, to put the world aright.

I am a person. I am me. I am not “dear”.

Mrs Margaret Ridley – from Milbrook, Cornwall.

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Guest Blog Plus Net and TextRelay call charges

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

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