Access, Communication and planning to be Disability Friendly

Today I say this:
You know what – this has brought back memories, and just seen on the BBC news that Capita and ATOS estimate they are going to overspend by 200 million pounds the cost to the taxpayer of the change over from DLA to PIP… well, what does that tell you when people think deafness and deafblindness is something that is easy to live with? No… it’s a complete barrier to society that is set on using voice and written words to communicate.
If you want to be all inclusive, build your access in at the design stage. Don’t try to change something to make it accessible after the fact. Think access to Communication, Mobility and information. Get educated in the needs of those who have a sensory impairment. Contact me if you want to know more.

My facebook post a year ago said this:

My rant for today – as a deaf person and it’s public. Everything in life should be accessible – from the bank to the Gov to the public meetings everyone is entitled to attend – to the opportunity to go to the cinema, to the gym – or a counseling session, or to read the news online at our own leisure (with subtitles).. or to talk to family – or friends – We have to “ring” or we have to go round and rely on someone to speak clearly – no two bones about it. If we make the effort to go round – we are told to “wait” if someone rings your phone, but we were there first! – how come? never say “it doesn’t matter – it’s not important” – never say “hang on my phone is ringing” in mid convo with you.. if we are with you – we need to communicate -and we need to follow – never go from a clear speech to a mumbled speech if someone who is hearing starts a conversation.. I can go on…

– and so many are not aware that we are perfectly competent to communicate – Now I refer to those companies and organisations like HMRC, utility companies, electric gas and councils – BUT it needs to be in an accessible format, which, to me is the stumbling block. If you are discriminated against – it means they are trying to make you communicate with them in their way – not yours. Square peg in round hole – or whatever – they can’t force you to “learn how to access their services” – they should be making “their services fully accessible”. Forcing you to break the Data protection act because they can’t “accommodate your needs” – is discrimination. Pure and simple. Forcing you to use a different language – simply because it is seen to be the language of your “disability” – is NOT the ultimate solution.

Today it is 2017 – and nothing has changed.

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Being totally deaf on a Sunday – what’s the big deal?

Often get asked this, but how do you explain something you’ve grown up with and been living with since you became totally deaf at 4 1/2 years old?

I started a book many years ago – never got it finished, but there was one chapter that I focused on what it’s actually like to be totally deaf. I can word it many different ways, this one was something that perhaps you might understand… just perhaps, because however you try – you can’t just “shut your ears” like you would “Shut your eyes” to imagine blindness. You will always “hear” something… so why am I trying to explain “total” deafness? It happens to many, be it in their childhood, or in their teens or in mid-life – or even in old age…

This is what total deafness is like.

It is Sunday. The sun is shining. You are sitting on the patio, looking at the flowers and reading the papers. The weather is warm. You feel at peace with the world.

There’s a smell in the air – it smells of petrol… then you eventually smell cut grass. You realise that the neighbour is cutting the grass, you don’t realise it makes a noise.

You see a bird flying, it meets another one in mid air and they land on the tree at the end of the garden – you see them flapping and their beaks moving, you realise they must be making a noise too… ah – well you wouldn’t have known if your daughter hadn’t come in and said that there was a racket going on and that birds were being a nusiance…

You go back to looking at your sunday papers – even then you don’t realise that they make a noise as you turn the pages…

Your daughter tells you to look up at the sky – you see a heilcopter – she tells you there has been an almighty noise just now, then you see some black clouds in the distance and realise there has been an accident on the motorway, just by the way…

You go to your I-pad, and look up the news and see that indeed there has been – but unless someone had told you  – you would have been oblivious to it.

You then go onto social media and see that friends and family have been talking about it for the last 4 hours, you had no idea… you were simply sitting in the garden thinking the world was at peace.

You go upstairs, and you put the bath on, you think it will take abut 30 mins to fill up, you go downstairs and you put the kettle on.  You then get distracted by the television showing that something is happening in your neighbourhood… you look outside, you see a ball fall into the garden..

You decided to throw the ball back realising your neighbours children have been playing, oblivious to the noise they have been making – you don’t get it that there have been so much noise going on this morning but you want to find out if all is ok  so you go back to the television and try to catch up on what’s going on…

Suddenly, your daughter comes running in telling you the bath is overflowing – you never heard it! – and finally you realise how much you are missing by not being able to hear. (to be continued)




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Communication support for deaf people in the UK

There are 4 – almost 5 types of communication support:
BSL/ English Interpreters – both Professional and recipient have to know BSL – including it’s grammar – at Level 5 or more. ASLI is the professional organisation

STTR – both professional and recipient have to know English as a root language and read at a subtitle pace. the professional is trained to use a palantype or stenograph machine – which plays the sounds of spoken language into a database that deciphers the sounds into words. AVSTTR is the professional organisation

Lipspeaker – both professional and recipient have to understand English at a spoken level – and the recipient has to be able to lipread. and the professional has to be able to cut out unnecessary verbal jargon. It is called “Paring down”.
ALS is the professional ogganisation

Notetaker – both professional and recipient have to be able to decipher the root message and summarise it at 150 words per minute. It is not verbatim. ANP is the professional organisation

Deafblind communicator – professional has to understand – or have an understanding of – the deafblind person’s preferred intrinsic communication needs as they cannot see the relay message be it by touch, spoken – or by the strength of the remaining sense. It is more than just a signed by touch or a sound – it needs to be matched to the recipient’s needs. There is no professional organisation for communicator guides for deafblind people.

Lipspeakers with sign – Professional  who relays totally in English – with additional BSL signs that the recipient can follow – it prevents the need to switch from one language to another. It is new. but much needed.ALAS is the professional organisation

IF a professional thinks they cannot get the message to the recipient faithfully and honestly, they therefore should not accept the assignment.

IF a recipient feels they cannot follow – or feels unconfident in the relayed message – then they should say so. You have a right to be able to follow within your own needs. Deaf people should not be used to be taken advantage of – a true Professional will make sure that their clients are comfortable and can follow – whomever books them.

If you are responsible for making sure deaf or HOH people can follow – you should only book a communication professional from the NRCPD register to make sure they are qualified to do the job, and understand the needs of your client.

No one should be pushed or put into a square box with a round hole – we are all different. It’s time to stop stereotyping deaf people into a language barrier.

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Impact of communication in families

Ramblings of an old deafie – or a deafie that rediscovered herself…. or a hearie that became deaf…. it’s not that bad.

I’ve lived a life that’s full…. I lived a life in confusion – until now.

Perhaps I should have a pause for breath, social media has awoken something that deaf people have never had a chance to share… until now…. be it a sign language or a spoken language it doesn’t matter – communication is so important in families….
My friend, I’ll say it clear
I’ll state my case, of which I’m certain
I’ve lived a life that’s full
I traveled each and every highway
And more, much more than this, I did it my way

I am a child of the 60’s. One of the “baby boomers”.

One of a pair of children born to a generation who lived through so much social change. yet social change is happening right before our eyes, even today.

One of this pair supported me. She is an inspiration. She was completely involved in the “Greenham women” – she shaved her head she saw babies being born in tents, she lived in caravans and she went on to become a teacher  – but she never faltered, she lives her life to make sure those who are disadvantaged by society are given her full attention. You will not know her, she is Elexi Earth, she is a name that used to be.
Greenham Women a Legacy

She and I fought all our lives, and now it’s full circle…..

Regrets, I’ve had a few
But then again, too few to mention
I did what I had to do and saw it through without exemption
I planned each charted course, each careful step along the byway
And more, much more than this, I did it my way

But – She happened to be my sister. I didn’t appreciate it at the time. I have to say I was excluded. I was deaf. She is now understanding who I am – and who she is and we have met  – again and we are complete…

Deaf! I hear you say? Well what does deafness do to people? One word – Communication.
there is more – much more…..

Yes, there were times, I’m sure you knew
When I bit off more than I could chew
But through it all, when there was doubt
I ate it up and spit it out
I faced it all and I stood tall and did it my way

That was for both of us….. So I tried to be “normal” spent many a year living, bringing up children – so proud of them all. Seeing the sister doing the same – and we did it – we did it our way…

I’ve loved, I’ve laughed and cried
I’ve had my fill, my share of losing
And now, as tears subside, I find it all so amusing
To think I did all that
And may I say, not in a shy way
Oh, no, oh, no, not me, I did it my way

For what is a man, what has he got?
If not himself, then he has naught
To say the things he truly feels and not the words of one who kneels
The record shows I took the blows and did it my way

Yes, it was my way…

And it was our way – this blog is dedicated to my wonderful, amazing sister.

Elexi Earth.

And for the family we have created – hearing and deaf – and now to the future.

The future will be – amazing. What we thought we disagreed on – was actually nothing more than a divide that deafness can create. Communication.

So next time you ever meet a deaf person, a deaf family member, a deaf colleague, a friend who has lost their hearing, a parent or relative who has suddenly discovered that communication is an issue, – just pause – and think – they need to know what’s happening, include, share, love, pray – and Communicate.

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A deaf person’s dream – courtesy of ABBA

I have a dream, a word to read
To help me access everything
Can you see the wonder of a lipreader’s tale
We can hold our future even if we fail
I believe in subtitles
Something good in everything I see
I believe in subtitles
Then I know the time will be right for me
I’ll cross the stream – I have a dream

I have a dream, a fantasy
To help me through reality
And my destination makes it worth the while
Pushing through the darkness still another mile
I believe in Subtitles
Totally good in everything I see
I believe in subtitles
Then I’ll know the time is right for me
I’ll cross the ford- I have a dream
I’ll cross the barrier- I have a dream

I have a dream, a word to read
To help me cope with everything
If you see the wonder of a deaf person’s tale
You can take the future even if you fail
I believe in Subtitles
Something good in everything I see
I believe in subtitles
When I know the time is right for me
I’ll cross the stream – I have a dream
I’ll break the barrier- I have a world to see

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Hardest Hit speech given in Manchester on 22nd Oct 2011

4 years on, and it’s still true.


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…

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Hearing Dogs and The hunt for the Preston Puma

Hello blog, today I’m having a bit of fun, learning how to upload videos and pictures, and talking about our Hearing dog, Oscar 🙂

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My husband, David is profoundly deaf like me. He wears a cochlear implant (CI) now, and loves it.  He has gone from being almost totally deaf, struggling to hear the loudest sounds with his hearing aids to being able to hear the grass crackling under his feet as he walks in the woods round where we live. He can’t hear “words” though, he still has to lipread to be able to follow what you are saying.
The CI gives a new insight to his hobby, he likes to go out tracking for his “Puma”. He has heard it. This video was taken before David got his CI. The rest of the blog is about Oscar, and the joy he has brought to our lives.

We have a Hearing dog, called Oscar. Hearing dogs are fantastic for deaf people. Oscar works for both of us. Oscar alerts us to the doorbell, the smoke alarm, the telephone ringing (which we ignore, neither of us can hear on it) and he will come and get one or the other of us when asked, leading the person to us. He also wakes us up in the morning with his alarm clock, and works to the sound of a cooker timer, if we want to be alerted at a particular time.

The other thing that Oscar does, without realising, is he makes our deafness visible. Oscar and Hearing dogs also give ourselves and deaf people some freedom to be confident in going out and communicating with other dog walkers and people. When you are a lipreader, the most important thing is to know the topic of conversation, and invariably if you have a hearing dog, you know people will be talking about the dog, so it gives you confidence.  Oscar also comes into places with us to support us in this way. Here’s a picture of Oscar on best behaviour, in uniform, at Chorley hospital last Monday while I was waiting for physiotherapy:


Remember, though, if you see a hearing dog, in uniform, they are working. Please do not just think that because there’s a dog in a place where dogs are “not allowed” you have permission to just come up to them and pet them. You will be distracting them from listening to sounds they have been trained to listen to. Always ask first, and when you ask, remember the owner will be deaf, so please, make eye contact, don’t shout,  use clear speech and remember the owner will be needing to see your lips to lipread.  You’ll see them with a lead like this, some of them are burgundy not bright green, but all have the same words on them.


If you see a dog wearing a bandanna like this one while out having a free run, you’ll know it means they’re a hearing dog and their owner will be deaf:


If you ever want to confirm someone really has a hearing dog, or any assistance dog, you can ask them to show their “passport”.  Every hearing dog owner will have one. The passport also shows the rights of assistance dogs and their owners. Refusing access to an assistance dog means you are refusing access to their owner too, and breaking the law.

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When he’s not working, though, Oscar has a wonderful time, walking with David, helping him “hear”  the direction in which sounds are coming from by a simple “look” on his face with ears pricked up. One hearing aid, or one CI doesn’t give you the “surround sound” you are used to. you can’t place where sound is coming from.

Oscar is a lab, he loves water too. So while David is busy looking for tracks and taking pictures of possible “puma prints” Oscar is busy trying to find water to play in. We have a “doggie” cam for Oscar, and here is one short video of the pair of them out in the woods, You can say, Oscar really is part of our family, and our “ears”   !

Hearing Dogs really make a difference to deaf people’s lives, Thank you to everyone who has at some point donated to hearing dogs, you have opened our world too.

…. and if you ask, no, we haven’t yet seen the Preston puma with our own eyes, one day!

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Communication support: Remote Captions using Respeaking vs Speech to Text Reporting

Communication –  spoken words, intonation, written language, sometimes a visual expression or a sign. Communication is knowing what people are saying, feeling, and a way of expressing a want a need, a thought or an order- being part of a professional and social circle where you are fully included.

Communication is taken for granted though. If you can’t communicate, it’s not because you don’t want to, it’s because it’s not accessible to you. It doesn’t mean lack of intelligence or ignorance. Having a hearing loss is one of those things that cuts you off from communication, it doesn’t mean you are dumb, it means you are excluded. If you give communication, you are entitled to receive response in a way you can follow at the level of language you have given it.

So here I am now, with my expertise and experience reporting on communication given in sounds and words and how you can access them if you have a hearing loss that is so severe you cannot make use of aids that help you hear.

I particularly love English. Reading it, writing it, and speaking it, too. Who doesn’t? I’m one of those who will correct any bad spelling or grammatical mistakes in English. I like to know EXACTLY what is said, at the TIME it is said, not afterwards, not a summary or afterthought. I am entitled to be treated equally and to get the same information as everyone else.


I’ve used Lipspeakers (“oral interpreters” they are called in the US) for many years as my preferred communication support. A Lipspeaker is a human being who listens to what is being said and relays it back to you, silently, with clear, lipreadable lip-patterns of their own. Lipreading is fine for short periods of chat, for meetings, maybe half a day, but not really for a full day. Lipreading is so tiring, you have to use your eyes and your intelligence to remember the message, but the part of your memory you use to do so is also the part that “decodes” the message, if you will. In other words, most people can hear and for them, they will be using their auditory memory as an “Aide memoire” – an extra bit of help to remember conversations. I do not have that. So lipreading takes a lot of effort, eye-strain, concentration and energy out of you. I’m also discovering as I get older, lipreading becomes a little bit harder every day.

Let me introduce you to something a little bit different. It’s another way in which you can get access to communication. It’s called Captions. Or subtitles. Or Speech To Text Reporting, STTR in the UK. Or Communication Access Real Time (CART) in the US. It is like watching subtitles of what’s being said at the time it’s said.

So when I go out to a conference, or meeting of many people for a full day and there are captions present to relay what is being said, I really enjoy myself. It is the easiest way to get full access with no stress.


There are not many STTR in the UK, around 30 to be exact. There are a lot more in the US (CART). A STTR is a human being who uses a phonetic keyboard called a Stenograph or Palantype. They listen to what is being said and they “play” the sounds into the keyboard, which then is picked up by a connecting laptop which matches the “song” to a particular word and displays that word on the screen. Within a second or two of it being played. STTR can keep up with speech at a speed of up to 250 words per minute, some particularly skilled STTRs can go up to 300 words per minute or more. It’s a highly practised skill to be a STTR, the equipment costs a lot of money, and it takes a long time to build up a dictionary of words that match the chords input to the stenograph or palantype keyboard. It also takes a lot of practise to build up speed and accuracy. A STTR, in order to become qualified has to undergo a test which will prove their accuracy to 99% or more.


Recently there has been a lot of publicity in the world I live in, about respeaking, and about voice recognition as possible alternatives to STTR. If it was as good as STTR I’d welcome it. But it is not. Let me explain why.

Let’s start with VOICE RECOGNITION. Breaking it down to what it actually is – It is a piece of software that will take sound uttered by a human being and convert it into words. All well and good. But the software isn’t “trained” to different accents, dialect, discourse or slang. Every person speaks slightly differently. So the user has to correct that, and tell the software which word they mean when they are speaking.This means Voice recognition has a very poor accuracy, and each person who uses it has to correct it to their own ways of speaking.

Way back in the 1990s, we had voice recognition software, so it’s not new. It was about 80% accurate for someone who was speaking in a very clear, concise way using perfectly pronounced “Queen’s English”. For someone with natural speech that uses lots of intonation, accent and slang, it could be as bad as 50% accurate. Not good enough to be able to fully understand what is being said using it.

Today, it’s not much different. About 90% accurate for a very clear speaker, who has spent a considerable amount of time updating the software to their particular voice. And you STILL have to train the software to the words spoken in your particular sound. You can’t do it in one or two months, it takes at least 6 months and even then, the quality is variable. It is no good for using as a method to subtitle, you only have to see it in action when you click on “Autocaptions” on a you tube video.

Click on here for Example of Autocaptions

Ok, so in order to make voice recognition more accurate, we bring in a human being. This human being has to train the voice recognition software to become familiar with THEIR voice. This is called RESPEAKING. Accuracy in respeaking will again rely on the perfectly spoken word that the software has recognised. So if someone is speaking very fast and the respeaker is in turn speaking very fast, the accuracy drops. If the respeaker has a cold, and the sound they are giving is muffled, the accuracy drops, if the respeaker is made to do it for a long time (ie more than 20 minutes on the trot) the accuracy drops.

Of course, the root words spoken by someone else, that the respeaker is listening to and relaying to the software have to be understood too. How many of you have picked up a phone call and listened to say, someone in India speaking with an accent and struggled to follow? How many of you who usually speak in a southern English accent can fully understand a Scottish accent in all it’s glory and be able to follow? Why do some people find a “Scouse” accent particularly difficult? You have to concentrate to be able to follow.

Now imagine you are a respeaker, you have to be 100% accurate in repeating what you are hearing and speak it, again, as it is coming to you, into your voice recognition software. At speed, under stress, with a perfect voice, for a long period of time. It will hurt. Your voice will falter over time, and you will need frequent breaks, with lots of water to keep your mouth moist and you’ll get very tired mentally because you also have to concentrate, to keep an eye on what is coming out of the system on the screen and making sure it’s the right word. Many words sound the same but have different spellings and meanings in English, they are called homophones. You have to make sure you’re using the right one.

Have a look at different homophones, click on a letter from this website:

Try some homophones

When the BBC decided to use respeakers instead of STTR for their subtitling, the accuracy and quality dropped. We all noticed too!


There’s a newer(ish) way to get communication support these days. It uses the internet to relay the output from a person at home, listening in to what is being said, and either using respeaking or STTR methods to change spoken language into captions. This is called REMOTE LIVE CAPTIONING or REMOTE REALTIME CAPTIONING. It’s fantastic!


The output will be compromised by several different things.

The first one is to have a good internet connection. Some remote captioning companies will tell you that it’s perfectly fine to use WiFi. It is not. WiFi signals whether they are mobile or in-house will ALWAYS only be as good as the quality of the signal. You are best having your technology hard wired to the internet. That way you will be guaranteed a good strong signal for the captioner to hear the sound clearly. (The more people who use your in-house WiFi signal, the weaker it becomes you see).

The second one is to make sure you have a good microphone set up, and that everyone who is going to speak will be able to be heard by the captioner. So you will need to remind everyone to speak clearly into that microphone, or the direction it is in. A bit like having a talking stick to control the conversation.  The captioner isn’t in the room, they are miles away, sometimes at the other end of the world. I’ve used remote captions and skype to present to a class of students in Karachi, using a captioner based in California, with the person controlling the whole based in London, UK. So the people in the room need deaf awareness, everyone, including the deaf person has a right to follow.

The third one is to make sure the captioner, too (whomever they are, respeaker, STTR or CART ) has a good, checked working knowledge of deaf awareness. The people who book and use remote captions for deaf people, may be deaf themselves. I need to be able to contact the person at the other end, both the person who is facilitating the communication and the captioner. It goes the other way too. If the captioner can’t hear what is going on, they need to talk to me. They can’t ring me you see (I’m deaf) – and perhaps the connection to the internet has been lost, so it is imperative to have a back up plan in case this happens.

The fourth one is to make sure the captioner can understand the voices being spoken over the internet. This includes accents, slang, the topic of conversation, the jargon, the dialect and the language. And to be able to relay EVERYONE’S voice. Including the voice of the deaf person themselves. For me, many people struggle with my voice on it’s own. Many deaf people DO have a “Deaf voice”. I have used respeakers in a remote captioning situation, where the captioner cannot understand me, and I’ve spoken at conferences where I’ve been highly professionally embarrassed by the lack of captions from an particular company to my own speech. Everyone else has got their speech captioned on the screen, but not me. It means deaf people in the room who are relying on the captions can’t follow what I’m saying. It’s like committing professional suicide except that I have no control over it. This is why I blatantly REFUSE to allow anyone other than a qualified STTR / CART reporter with a checked Professional Registration proving they can work with deaf people and can understand deaf voices. So don’t assume all remote caption companies are going to be the same.

The fifth is to understand that if you are using respeakers, you will not get a word for word flowing script of captions. The output will be in blocks. So for the people you see communicating in the room, you will get the captions a lot later than if you were using STTR, it may not seem like much but even 1 or 2 seconds behind is crucial because you will not be able to get a word in as by the time someone has finished talking, you are still reading what they have said, and someone else will be able to come in before you’ve even finished following the last person. This is important, you can’t interrupt a conference, you can’t ask them to stop while you are following the last bit of information, therefore you can’t partake fully in what is going on.

So….. Whatever the provider says, respeaking will never be as fast or accurate as a STTR / CART. If you have used both, you will notice the difference straightaway. You won’t get the background “noises” like “mobile phone ringing”; “someone knocking on the door”; “fire alarm is going off”; “person is talking very softly “; “someone has just come in”; “traffic noises outside”; “inaudiable” …. that is what a trained STTR (or CART)  will give you. And that is only from a captioner who is trained in deaf awareness. You also won’t get as much grammar, such as full stops, semicolons, proper sentences and strategically placed pauses in the dialogue.

I’m going to try to explain to those who think they know what I need as a deaf person. And it seems to me that all these people are hearing. They obviously haven’t used or relied on communication support. If they had nothing to help them follow a meeting but an output that mirrors the awful recent subtitling by the BBC using respeakers, they would all be up in arms. Like listening to a badly tuned radio perhaps? If they were given a programme to listen to in which they had to listen very carefully to and try to work out what was being said and it was not clear at all, chances are they’d give up or change the channel. Unfortunately, if you’re deaf, you can’t do that, there’s no other option but to put up with a substandard service because you have no choice.

To be fair on the BBC, we are beginning to see some improvement in the accuracy of the subtitling output. But that is only because they have listened to deaf people and taken action. If we didn’t tell them, nothing would have changed. So here I am, now, a deaf person reporting on the do’s and don’ts of remote live captioning. It is the same sort of kettle of fish.

When you are using or booking live remote captions, remember to ask and listen to those deaf people who have used it if they have used it before. Don’t think that because this one is cheaper than the other, it’s better or that it’s the same thing. It’s not. There is a reason to look for accuracy and quality when booking, it will hugely affect the understanding and access the deaf person is getting, much more than you think.

I am a member of a vibrant deaf / HOH community on social media, Pardon, I’m deaf. When will you listen? We need Access for All.and I have seen and read many bad reviews as well as good ones. Here are some of them….:

Just to let you know I’ve had to put an appeal in to ATW about the cost they were allowing me for captions. I tried this Australian company for 15 minutes and could not follow the conversation. It was like trying to follow the news or a footie match, big chunks of text appearing at a time with no reference to sentence ending or phrases. We talked at normal conversation speed which was, according to this same company, “very fast”. But I can’t tell everyone to slow down, it’s not going to happen in a big conference call! So, no. Definitely not suitable!

I went to Uni of Westminster a few years back and the remote communication support for all was useless. I never use captions myself as I use interpreters but I do remember the problems involved at this event. Awful! Only worked in a few rooms (hit and miss though). Was a learning point for all I think as we all know technology can be so temperamental. Having said that it can work with correct set up and connections.

Once I was at a meeting and using onsite STTR. My manager was watching the output. She said to me “What’s going on? She is making it all up”. I didn’t know, obviously, I couldn’t hear what was being said and trusted the captioner 100%. That was scary.

One of my colleagues sat next to me on Wednesday morning, watching the remote captioner working. He was stunned and amazed at what he saw.

This is the reaction when you get access, my first ever “speeches” from my smartphone, with captions. The expressions say it all 


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Why Deaf awareness?

Still relevant, and still ringing true 4 years and 2 days later….


Writing a page on Facebook was my first attempt to share deaf awareness with the world.  It was clear, Facebook wasn’t enough, so here we are with our first blog. “What is Deaf awareness?” or more importantly, “Why do we need Deaf awareness?”

When you think about the people you meet and talk to in your everyday life, I wonder if it crosses your mind that one in every six has a hearing loss? That’s 10 million people in the UK and this number is growing steadily with exposure to loud noises at an ever younger age. Over half of people who are 60 or older have a hearing loss. (and one in six has a vision loss, that equates to approximately 2 million who may be partially deafblind).

So, what’s a deaf person? Most of you will think that someone is a deaf person because they use sign language…

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Pains, Perils, Deadlines, Policies, Frustrations, Telephones, Devils and Angels in the NHS by a totally deaf lipreader…..

Hello Blog. Long time no see. Apologies for leaving you in the dark, time to wake up and publish some news from me to you

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I am currently glued to a bed in my living room. I broke my kneecap about 2 weeks ago and have had an operation to screw it back together and to stitch the tendons back on. My leg needs to be kept straight, I am unable to walk far at the minute, it is excruciatingly painful.

I do not use the phone, and I lipread. I hear nothing at all, no aid to hear with can help me understand speech.

I have a lot of painkillers given when I was discharged from hospital, and am now in need of more. I cannot get to the surgery. The painkillers can make me drowsy, and in turn, it affects my lipreading skills.

While in hospital, I was never asked for communication support. Once everyone realised I didn’t use BSL, they seemed to assume I would “cope”. I did however spend time explaining to the nurses and staff how to communicate with me. I have seen some who tried to shout in my ear, some who looked around in panic, trying to find someone to relay to me what they are saying and some who simply assumed what I wanted / needed and didn’t communicate well at all. There were some staff who were brilliant, I could lipread them without any problems, but there were also many who had different accents, some who would speak with a “v” instead of a “w” and who would mouth their words so big it was embarrassing. There were also some who rattled off their words at 300wpm who were impossible to slow down, as if they were in a hurry all the time, and some who would simply walk away and not come back. But after some explanation we sort of hit a happy medium where we could at least communicate a bit better with some communication skills “training” from me.

I settled in over a couple of days in this ward before going for my operation. After being in the pre-op ward, as soon as I came out of theatre, all my stuff was unceremoniously dumped on my trolley bed and I was moved to another ward.

Confused, I then had to do the whole thing again, explain to the new staff how to communicate with me. I was still under the effects of an epidural at the time. It was un-nerving, after I had spent all that time the previous 2 days getting used to lipreading and communicating with the staff on the other ward.

Being stuck to a bed meant I had to rely 100% on the “emergency” button for every little thing, even if it was to go to the toilet or to get something out of reach. The pain was excruciating, even to move my leg. Most of the staff were fantastic, but some were pretty rude, they would come up to me and tell me not to press the button so much and who would say they had a lot of work to do and I wasn’t the only one in need. At one point I was kept waiting 2 hours for a request for more painkillers, I had been told by the surgeon in the operating theatre to make sure I never got to the point that the after pain was unbearable. This particular episode left me screaming in pain with tears running down my face, and yet I was made to feel I was “putting it on”!

This is why I asked to go home, I felt I could control my pain better and I have to praise the doctors on the ward for communicating so well and giving me the medication split up so I could mix and match to control my pain myself. The occupational therapist came to see me to help me get the equipment I needed to be able to go home, she was amazing, she got me all the basic stuff I needed within 3 hours of coming to see me. A commode on wheels, a bedpan for ladies (wonderful!), and some really helpful advice. The physiotherapist came too, and showed me how to get on and off the commode so I at least could be moved about downstairs. These two lovely ladies were really helpful. I was given a list of phone numbers to hire a wheelchair if I needed one, and she even took the trouble to go and find an email address I could use instead. They also arranged for the district nurse to come and change my dressing the day after I got home. 11741796_10153039948057776_1147985985_n11694408_10153039948012776_1351030608_n

I left less than 24 hours after the op, they didn’t arrange any transport home, it was such a challenge to squeeze myself into the car to get out of there, with a painful erect leg that couldn’t be moved. But we managed (just!). I was not asked if I needed a sick note, and was not asked if I needed any help in getting to the car. Of course I work, so I do need a sick note, it was like they assumed all deaf people don’t have a job!

On the way home, we bought a memory foam mattress to put on the single bed we have in the “man cave” (our shed) which we built up in the front room while I was sat on the wheelie commode. Best £85 I’ve ever spent! To date I have not been able to go upstairs, and only yesterday did I manage to get to the sink in the kitchen to brush my teeth properly. Brings home to you the difficulty people have when they have accidents like mine, and I have now got HUGE respect for all my friends who are using wheelchairs, some for life.

Day 2 at home, the district nurse came. Changed my dressing and told me she would go to my GP surgery and ask them for a sick note. I asked if she was coming back, she said no. I asked if there was any way in which I could be given a mobile SMS number to get a GP or someone out in case I needed it, she said no. She did, however give me her personal mobile number, which I have got, just in case of any really pressing emergency.

10 days later, I had an appt at the hospital to get the staples out, another x-ray and a meeting with the consultant. I had to ask for communication support, a lipspeaker was booked and hospital transport was booked to arrive at 7am. My lipspeaker was only available until 9.15am, the appointment with the consultant was at 8.30 am. We were all ready for the transport, we waited and waited. The transport was asked to allow my husband (who is also deaf) and our joint Hearing dog to be in the ambulance. However I do have a daughter who cannot be left alone (she has aspergers) – the ambulance people, firstly didn’t arrive until 8.30 am… and secondly told us they couldn’t accommodate my daughter, I needed someone with me in the ambulance for communication support, and we ended up taking the car, following behind the ambulance, because it was the “rules” that no-one else was allowed to travel with the patient.

In the meantime I was in constant contact with my lipspeaker, who was waiting at the hospital for my (very late) arrival. We got there about 8.50am, and there was a lot of confusion, my lipspeaker found us (she was waiting at the main entrance) and staff were told by us and our lipspeaker about the time deadline. The hospital was heaving. Staff had to rush around getting an X-ray, and getting everything ready to meet the consultant, we were pushing time all the time, finally getting into the waiting area for the consultant at 9.30 am – time, time, time, I desperately needed my lipspeaker to be able to follow the consultant so I could ask questions and really understand what had happened and get advice on how to deal with the injury.

I was so stressed, all the questions I had in my mind flew out of the window, all I could think about was my need to speak to the consultant and my lipspeaker’s need to get to her next assignment, which was a good hour’s drive away and at 10.30 am.

In the meantime, staff and patients and the general public in the waiting room were all coming up and asking if they could say “hello” to our hearing dog, some petting him without asking, and distracting him from working and trying to engage in conversation with a very, very stressed Suzie.

Finally, at 9.45am I was moved into the treatment room to have the staples removed so the consultant could see.


I didn’t even have time to think about how painful or what this procedure was going to be, all I was doing mentally was going “hurry up” – get this done so I could see the consultant and looking at my lipspeaker, who was at the point of going “I really have to go, 5 minutes and we are going to have to give up, you’re going to have to manage without support….. .”

Then my lipspeaker went “oh well, I’m late already, might as well wait for the consultant…” and I was going “oh – please do give my sincere apologies to your next client, I can’t do anything…..” About 9.55, the consultant came in, we had about 5 minutes of a chat, and some advice. As soon as it was finished, (with still a bucketload of questions that never got asked properly, but at least the basics were put into place, I won’t do any more damage by putting a little bit of pressure on my leg, and I must keep it straight, I think – I have a hazy memory of it all, to be honest. You don’t take communication in very well when stressed!). My lipspeaker then had to go.

But the next stage was to go to the Occupational therapist to get a brace. She was brilliant, she too, gave me her email address (yes you guessed it, if you want advice or support you are given yet another phone number!).

Getting back home, we went to Hospital Transport, and again I asked if my husband, daughter and Hearing dog could travel with me. No they say, it’s “policy”. Someone needs to explain to the people who devise these policies that if they want patients to help them help themselves, they either allow a relative / or family in the transport or they can book communication support for the deaf person from the very point of contact (home) to the very end of contact (home), or they can train their staff in basic communication skills, and this means they know the difference between a deaf lipreader and a deaf signer and how to deal.

Talking to the staff on the transport, it was clear, even they thought deaf people signed. I was told how clever I was to lipread and how well I spoke, yet again evidence people do not understand deafness.

I never thought of myself as being as bad as some of my peers who complain loudly about lack of communication support in the NHS, I have to now say confidently, I agree, and for those who do not use a sign language, the need is just as great.

Knowing and seeing for myself the range of different accents in the hospitals, even someone with a hearing aid or cochlear implant will have problems understanding these staff (I’m talking communication here, not lack of commitment, the staff I met on my travels were, in the main, so nice, supportive and tried their best to be as helpful as possible, once they understood the issues. There are many unseen angels in the NHS, they deserve our thanks and respect for what they do in a highly stressful, time pushed job).

So here I am, on my bed in the living room, typing up this blog of my experience. It had to be done. I’m running out now, of painkillers, I need to get some more. I also need my sick note, to all means and purposes it is still sitting on a desk in my GP surgery (despite me asking the district nurse to ask them to post to me, and despite me sending 2 emails to the practise manager asking for her to post to me).

I’ve tried to get into the patient access to get a repeat prescription, the facility to order online was not there. So this morning I fired off another email (the 4th) to the practise manager, asking for help. She responded within 10 minutes. The email wasn’t very nice to be honest, it was like I was being told off for talking about medication and needs, and I should have used a different email address to contact the surgery because she had been on annual leave and that was why my email wasn’t picked up, her email “isn’t monitored” when she is off on holiday. I’m sorry, but I have been asking for a sms number, or a better way to contact the surgery for the last 5 years, I asked the district nurse for one, and I continue to ask for one. It makes sense.

The systems are disabled by me. I’m not disabled by them to be honest, disability is when you hit a brick wall of inaccessibility. You can’t put a round peg in a square hole. People come in all shapes and sizes and requirements, there are technological solutions out there, yet society continues to use the “easiest way” for the majority without thinking about the need to get access for of ALL. There’s no excuse. The solution is in front of you, so why is it so hard?

Throw me the Data Protection act, and I will give you many different ways you can keep to the Law, yet give you an access solution as well. In fact some will say I should have got someone else to ring for me, a neighbour or a friend. Sorry – I’ll be giving them information about myself that I may not want to give. It is a breach of my personal security and privacy, and therefore that notion is a breach of the Data Protection act and my personal Human Rights to privacy.

Anyway, back to the events of this morning. The Patient access website was only to book a GP appt, which was no good for me because I can’t get to the surgery in the first place! The email from the practise manager had given me the instructions to get my prescription.

In the fog of my morphined up haze I forget that I needed to go to the actual surgery website, not direct to the patient appointment booking system. At least she gave me the link to it (but it was wrongly spelt and I had to go back to google to find the proper link….) I didn’t bother telling her this, it wasn’t worth it. I had to register as a new patient on the surgery website in order to get into it, this involved me having to put a “fake” 1234567890 telephone number in as I couldn’t register without inserting a “necessary field”. I thought I had already done it all by registering with the patient access web service….. And because I was “new patient” when I registered this morning, I was only able to get a choice of, wait for it… going to the surgery to pick up my prescription… and to make things worse, I got an email confirmation from the system giving me… another telephone number to ring if I had any queries about the repeat prescription I had just ordered.

Being polite, I have just forwarded that email, to the email the practise manager had given me, asking if they can possibly deliver the goods to my house please?.

I’m not sure if I used the word please… I apologise if I did not. But I’m not impolite, I’m a nice lady. I will go out of my way to help anyone who needs help, but when I’m faced with these obstacles myself, I have to be honest, I lose my patience too, and sometimes wonder if I should just emigrate to the Outer Hebrides, with all my friends who are deaf, BSL users, deafened or deafblind and we, ourselves can sort out all the systems we need in order to live a happy life without barriers.

It would be good though, if perhaps sometime, someone out there will read this blog and compare it to the dreams and aspirations of the report by NHS England, in the hope that things will improve

. NHS England report pic

I’m tired now. I have to get myself walking before 18 September, looking forward to going to the National Diversity Awards, I’ve been shortlisted for Positive Role Model. Very humbled and surprised to be invited to such an event. I thank everyone who took the time to nominate and endorse me. By then, all this will hopefully be a distant memory, and I hope that those of you who read this little story of mine will sit back and start thinking about access, about systems, about what everyone needs to be a member of this society we live in. After all, we are only here once

Suzie Jones

Shortlisted nominee National Diversity Awards 2015, (NDA shortlist)

Deafcomm (My website)

Founder of “Pardon I’m deaf, when will you listen we need access for all”. (Facebook page to Pardon Group)

Teacher and trainer, “In Good Hands” Deafblind project (In Good Hands)

Co-ordinator of Chorley and South Ribble Disability forum, (Disability Equality (nw))

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