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So you have hearing loss too? Soundz Off can help

Welcome to a very large club – 11 million of us in the UK have hearing loss (that’s one in six people) predicted to rise to more than 14.5 million by 2031 (Action on Hearing Loss 2015).  Add this to the 360 million people worldwide with hearing loss and that’s a very big club!

Like all clubs we have something in common – similar interests, ideas, problems and difficulties to overcome. Like all clubs, there’s lots of information out there relating to our speciality interest, yet only 1% of medical research spending goes on hearing loss and it’s surprisingly difficult to find the information we need.  So where do you find that information?

Many people deny they have hearing loss for up to 10 years and, for most of us, our only experience with a hearing professional is being referred to audiology for a hearing test and hearing aids.  Then we get waved off from the hospital and left to our own devices – not helpful when we’re usually reeling with shock at the diagnosis, baffled by the technology and unaware of how to help ourselves (and others) to cope better with this invisible disability.

That’s why I created Soundz Off in 2014 http://www.soundzoff.org – an independent website which brings together hundreds of links to useful websites related to hearing loss: equipment, support organisations, technology, social media, forums, apps, research, events … the list goes on.

As someone with hearing loss myself (I have moderate sensorineural hearing loss in both ears and wear two digital hearing aids), I was amazed to discover this didn’t exist before. Over the years I found hundreds of organisations which exist to support people with hearing loss but nobody ever told me about them – I had to support myself and find them myself one by one. Nobody ever brought that information together in one place … until now.  Soundz Off does the legwork so you don’t have to!  We also have an active Facebook page updated daily with the latest information and news on hearing loss http://www.facebook.com/soundzoff  – how I wish this had existed 20 years ago when I was just starting out on my own hearing loss journey.

Hearing loss affects people in different ways and most of us struggle with this challenging disability.  You’ll probably recognise where you are in your own journey represented by this graph of the different stages of grief:

stages of grief

As someone who’s travelled right though every stage of the curve and eventually adjusted to my own hearing loss – even to the stage where I’m now working as an advocate and welfare officer for people with hearing loss – Soundz Off is my gift to you, whether you’re new to hearing loss or you’ve been coping with hearing loss for a long time.  Discover new information, make new contacts and friends, learn about what’s being doing to cure hearing loss and tell us about organisations you think we should add to our Directory http://www.soundzoff.org/directory

The good news (there’s always good news!) is that for every stage of your journey there are organisations and people out there who can help you.  Soundz Off ensures you don’t have to travel that journey alone and we can all learn to cope better with hearing loss in a hearing world.

So, as I said at the beginning, welcome to the club!  Good to meet you.

Tania Le Marinel

 

The challenges and joys of learning BSL (British Sign Language)

As somebody who’s always loved languages and hates being flummoxed by a word they don’t know (I have to rush and look it up in a dictionary), learning BSL has been an interesting experience.  I’m fascinated with this expressive, visual language and how the signs representing words can be either very obvious or completely obscure.  For example ‘tea’ (lifting your forefingers up to your mouth with your little finger sticking up in the air – the universal sign for tea) is really easy to remember.  But signs which bear no resemblance at all to the words they’re supposed to represent, such as ‘hotel’ (the nearest I can describe this to is taking your cap off and putting it sideways onto the table) require a feat of memory power which has been really challenging.  It certainly gets the sludge moving in my brain in a way that it hasn’t done for years!

People were signing as early as the 16th century, but BSL is an unwritten language so it’s difficult to know exactly how and when it began.  When Thomas Braidwood’s ‘Academy for Deaf and Dumb’ opened in 1760, this was the first school in Britain to include sign language in education.  Then, as more people moved to the cities, BSL became standardised and used for teaching internationally.

Today there are apps to help us learn BSL, for example I use the SignBSL app (an online BSL dictionary) to remind me if I can’t get the sign correct.  But then I hit another barrier – there are so many different signs for different geographical locations.  In my first year alone I’ve had 3 teachers (for various reasons) – the first taught me signs from Newcastle, the second taught me signs from Darlington and my current teacher is teaching me signs from Durham.  That’s 3 different signs for every single word just in the first year – I know that this is the same as different dialects and different regions, and I can appreciate the rich variety and history of language evolution, but that’s still a lot for a beginner to learn!

Just like any language, BSL is constantly evolving and new signs are being created all the time.   Using the letters ‘P’ + ‘W’ is easy to remember as the sign for ‘Prince William’, but BSL seems much harder to me than learning French, German or Spanish, mainly because it’s difficult to actually write down a description of what the sign looks like.  For example, this week for the word ‘party’ I wrote: “cross wrists facing away from me, turn fists over, open fists and move hands apart then splay fingers wide” – that’s a long description for just one word!  By the time I’ve finished an hour’s lesson I’ve got pages of notes!

I’m now revising for my Level 1 exam so it’s still early days but I’m starting to get the hang of it and to chat (albeit in very simple fashion) to the deaf clients I support at work.  And the rewards are far more than just learning a new language … it’s seeing the surprise and appreciation in the eyes of my deaf clients as they realise I’m starting to communicate with them in their own language, rather than me expecting them to adapt to mine.  I get smiles, encouragement and laughter as we connect for the first time in a totally new way which is absolutely brilliant.  That, in itself, makes all the hard work worthwhile.  Wish me luck!

bsl

 

 

 

 

 

Enough is enough … it’s time to complain about the NHS!

Anger  Most of the time I’m quite a laid-back, balanced, understanding person but sometimes events conspire to bring me to a head of steam and that’s what happened this week!  A letter of complaint is now lying on the desk of the Chief Executive of Sunderland City Hospitals NHS Foundation Trust complaining about direct and indirect discrimination against people with hearing loss.

What’s got me all riled up?  Well, I just attended the last of three self-management programme training days run by Hearing Link.  The course itself is useful (teaching you how to manage your hearing loss better) but the most useful thing was sharing experiences with other people who are hard-of-hearing.  I don’t really come into daily contact with other people with hearing loss so this was a bit of an eye-opener.  Although we all had a positive mind-set, the complaints we had were legion and all about similar things – the lack of understanding about hearing loss by the NHS!  It added to my recent experiences by really tipping the balance and finally driving me to put pen to paper.

At Christmas I was unlucky enough to fall down the last step of a dimly lit staircase while away on holiday, badly twisting my ankle and aggravating a previous shoulder injury (and no, I hadn’t  been drinking).  Once back in the UK, I decided to get an x-ray of my ankle and to visit my GP to get a referral for physiotherapy for my shoulder.  It all went downhill from there.

As I’m hard-of-hearing and can’t hear on the telephone any more, I use email, texts and messaging all the time.  However, my experiences in one week consisted of the following:

– to make an appointment at my GP I can only contact them by telephone

– to make an appointment for an x-ray, I need a letter from my GP who can only be contacted by telephone

– to make an appointment for physiotherapy I can only contact them by telephone at which point I need to do a 20-minute assessment by, you guessed it, telephone

– to make an appointment at audiology, I can only contact them by telephone

– when complaining to the NHS about discrimination against people with hearing loss, guess what? They asked me to contact them by telephone!  Aaaaargh!

If the audiology department of the local hospital can’t get it right, then what chance do we have?Sometimes you just have to take a stand!

Watch this space for updates … I’m not letting this one get away!!!

telephone in hand

Travelling with hearing loss – it’s a pain!

Well I’m just back from almost a month away on holiday in America visiting two national parks in California and flying to the beautiful island of O’ahu in Hawaii.  Wow, did we have a good time!  Travelling the world – particularly the USA – is just my favourite thing.  A few days in San Francisco, a snow-covered lodge in Sequoia National Park, Christmas in a log cabin in Yosemite National Park and New Year in a fabulous private house in Hawaii – truly memories to cherish and remember forever.

A great experience of course but there are so many things which negatively affect the whole experience when you’re hard of hearing.  Not being able to hear announcements on the plane, not knowing what’s happening when flights are delayed and being unable to hear announcements in the airport – that’s just for starters.  Add to that the terrible background noise at check-in desks, being unable to hear bus drivers on courtesy coaches when they ask which hotel you’re staying at, trying to hire a car in a deafeningly loud rental office …. it makes travelling so much more stressful.

I’ve also become a keen critic of architects who design marble hotel reception areas with no soft furnishings, terrible acoustics and waterfall features which drown out speech.  Then there’s waiters in restaurants who have strange accents and mumble while they tell you about unfamiliar food you’ve never heard of, plus tours around tourist attractions with no loop system for guided talks …. well it’s just a real pain.

One thing that made the journey slightly easier was a new app – Flightview – a flight tracker and airport diary.  You can track your flight number and it updates you on any delays, changes to arrival/departure times and your departure-gate number.  It was a real help, although you need to keep an eye on the airport information just in case as our flight departure gate changed at the last minute and Flightview didn’t update us.  At least it reduced the stress of having to listen to garbled announcements or fighting the queue to get to the check-in desk  for more information!

Delayed-Airline-passengers

 

 

Come on, Sky! Get your act together!

I’m thrilled to see my guest blog is on the Action on Hearing Loss website today!

I’ve been a member of Action on Hearing Loss for years now, including spending a year fund-raising and supporting their activities, and it’s really satisfying being able to play a part in campaigning and raising awareness on hearing loss issues.

I was delighted to be asked to write a response to the recent ATVOD report about the poor levels of subtitling for on-demand services.  We all know the technology exists to make this happen – the BBC has 100% of its content fully accessible – so other broadcasters are lagging way behind and they need a sharp poke with a pointy stick to get them to catch up.

Yes, there are technical difficulties, but if the sound went off on normal programmes you wouldn’t be able to hear yourself think as a scream of protest went up around the world from people with normal hearing!  Why should we be any different?

Sky is missing a huge financial opportunity here too – there are 7.5m people in the UK who regularly need subtitles but can’t access anything on Sky’s ‘On Demand’ service.  It’s so disappointing/frustrating/irritating!!!  If Sky got their finger out and provided subtitles just think how many more potential customers they could get!

If you feel equally aggrieved and want to do something to support this campaign, contact campaigns@hearingloss.org.uk

http://www.actiononhearingloss.org.uk/community/blogs/our-guest-blog/subtitles-an-absolute-essential.aspx

frustrated

Where did the subtitles go?

One of the most infuriating things about watching TV or on-demand films/content is that so many programmes aren’t subtitled.  I was really looking forward to watching “The Vikings” on the History Channel but, guess what, no subtitles!  It’s really unfair that the majority of people can watch whatever they like but that hard-of-hearing or deaf/blind people have to put up with being treated like second class citizens.  Why should I have to wait for months until the DVD comes out even though I’m still paying the same subscription charges (e.g. Sky) as everyone else?  Ooh, it makes my blood boil!

I’ll be saying more about this in my guest blog for Action on Hearing Loss who’ve invited me to write a response to the findings of a report following their “Future of Subtitling Conference” held on 10 November in London in partnership with charities SENSE and UKCOD (UK Council on Deafness).

The Conference challenged broadcasters, service providers, Government, Ofcom and ATVOD (Authority for Television on Demand and co-regulator for Video on Demand services) to ensure subtitling and audio descriptions are provided as standard for hard-of-hearing and deaf/blind viewers so there is accessibility for all.

The findings of the ATVOD report – which is published on 13th December – make serious reading and send a really sharp message to broadcasters telling them it’s way beyond time to start pulling their socks up and to do something about it.  Watch out for my blog which will be appearing w/c 16th December on http://www.actiononhearingloss.org.uk/community/blogs/our-guest-blog.aspx

The joys of travelling with hearing loss ….. not!

One of the things that hearing people don’t realise is the amount of ‘kit’ that comes with any type of hearing loss.  Hearing aids, batteries, boxes, moulds … that’s just for starters.  If you still have the ability to listen to music, then the list just expands exponentially and you need a special suitcase just for your hearing gear.

For example, a hearing person can just get onto a plane, plug in the headset and go.  I wish!  Headsets are no use when the microphones in your hearing aids are at the TOP of your head, while headsets are designed to go over the CENTRE of your ears, so unless you want to have your headset perched on the top of your head like a parrot then that’s not going to work!  So I end up taking a whole bag full of paraphernalia depending on the circumstances.

I have a hearing loop which I can wear round my neck.  Brilliant, sorted?  Er, nope!  Because nobody in the electronics industry has ever thought about what it’s like to be deaf and nobody has ever thought about making life easier for us by standardising the size of jacks on the end of electronic widget cables.  So, my hearing loop doesn’t plug into the hole in the aircraft arm because the plug is too small.  So I need a bigger jack size – I learned by trial and error to bring it with me and it took a bit of tracking down but I eventually found one.  I plug it into the plane arm-rest and rrrrrrrrrrrrrrrrrrrrrrrrrrr!  All I can hear on the loop is feedback/interference from the plane’s engines.  So that’s not an option 🙁

So I decide to listen to some music on my iPod but the plug on the end of my hearing loop is too big!  So I need yet another jack, a smaller one, which takes even more tracking down.  So now I have a phone, a loop, two jacks, hearing aids and batteries.  Then I need a charger for my loop and  a charger for my iPod.  Add to that my streamer so I can connect by Bluetooth to electronic devices (just not on planes), the additional chargers for the streamer, my Kindle and my iPhone and I might as well just give up and pay the excess baggage charge now!

PLUS I need to take all this kit on the plane with me – the guys at Passport Control are all peering at this spaghetti junction of electronic wiring and gadgets with great suspicion.  Nothing like trying to explain about hearing loop technology to an irate security guard on high terrorism alert in the middle of the Christmas rush at Heathrow airport.  Honestly officer, it’s just so I can watch the new Hobbit film on the plane!  And don’t even get me started about the incomprehensibly garbled announcements about plane departure times ….. sigh!

Sigh. wiring

Shake it Off! They’re looking at me like I’m cray cray crazy!

Every now and again something makes me stop and laugh, usually a daft clip of kittens doing something ridiculous on Youtube.  But this week saw me dancing about to a great clip of pimped hearing aids which has been set to the catchy Taylor Swift song: “Shake It Off”.

“Pimped hearing aids, what’s that?” I hear you cry.  Well a young lady named Aimee-Louise Paddock has created a fab song to go with hundreds of photos on a Facebook page called “Pimp my hearing aids and CIs”.  It is mind-blowing!  You’ve never seen funky hearing aids like this before – coloured tubing, glitter and covered in nail foils, wraps, sparkles and ribbons, plus hundreds of hearing aid charms – for boys, girls and adults – of all sorts of animals, flowers and cartoon characters. Even Swarovski Crystals are getting in on the act!

Aimee-Louise is promoting the great message that parents shouldn’t have to teach children to hide their hearing aids …. they should decorate them and wear them with pride as it definitely improves the kids’ confidence levels.  What a great message! Considering 80% of people currently say they want a hearing aid that’s invisible (due to the outdated ‘stigma’ of being thought of as disabled) this message obviously still has quite a way to go in reaching the public consciousness but this is a great start.  It’s made me smile …. and start thinking about how I’d like to pimp MY hearing aids!

Next Generation Text Service – hello is anyone there?

I don’t consider myself a Luddite when it comes to new technology but the New NGTS app is proving to be a real challenge.  This new service is for people who can’t hear on the phone – relay assistants are connected into the call and can type what the other person is saying so you can read it on your phone/tablet/laptop/PC – you need never miss a conversation again, how amazing!  You can download the NGTS app to your Smartphone so you can make and receive calls anywhere (as long as you’re connected to the internet).

It sounds like the answer to my prayers in terms of finally being able to communicate using a mobile phone again but at the moment it’s a case of balancing my very high expectations against my limited technical ability, never a walk in the park!  I’ve never used a text relay service before so am still learning about how it all works.  I also have lots of questions which the site doesn’t answer so have just whizzed off an email to their helpdesk to ask for support – oh joy of joys, I can expect an answer in up to 5 days!  Just as well it wasn’t urgent!  Apparently there are quite a few teething problems and there’s a lot of chatter on Facebook about it so at least I’m encouraged by the fact that I’m not the only one.

As much as I relish the thought of being able to use these new apps to make life simpler, I can’t help feeling sympathy for people for whom the internet, apps and software downloads are an unfamiliar and challenging world.  My Mum, for example, doesn’t use (or want to use) a computer which means that life and communication becomes very difficult – finding out what’s on at the cinema, getting quotes for new insurance, finding out when the next bus is due.  Technology is a wonderful thing, but not for everyone.

ngts