Category Archives: technology

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

 

Subtitle it!

One of the things we keep banging on about at Soundz Off is the need for every TV programme, on-demand content, catch-up TV and boxed set to be subtitled for people who are deaf and hard-of-hearing.  If the BBC can manage it, why can’t all the other broadcasters?

Action on Hearing Loss are spearheading a campaign to support this view and I’m delighted to be mentioned in a blog produced for SCOPE by AOHL campaigner, Johanna Taylor.  The more mentions we can get, the better!

subtitles

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

ATVOD report shows broadcasters are failing ‘on-demand’ users

The new ATVOD report out today shows that 96% of Sky TV’s on-demand services have no subtitles.  Well that stinks!  No wonder we all get so annoyed when we have to pay full price for our Sky subscription but can’t access most of it online because we can’t hear the dialogue.

And just to show that feeble excuses about ‘technical difficulties’ won’t be accepted – contrast the results against the BBC who have 98% of their on-demand services fully accessible with subtitles for the deaf and hard-of-hearing.  Well done BBC!

Action on Hearing Loss are supporting people with hearing loss and asking them to complain to broadcasters direct so please help them out.  Get emailing, tweeting and shouting loudly about how unfair this is.  If the BBC can do it, then so can everyone else!  http://www.actiononhearingloss.org.uk/get-involved/campaign/access-to-television/subtitles-are-playing-catch-up-on-video-on-demand-services.aspx

Read the full ATVOD report here http://www.atvod.co.uk/news-consultations/news-consultationsnews/atvod-report-reveals-vod-services-becoming-more-accessible-and-calls-for-further-progress-to-be-made

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

It’s a work of art! Soundz Off looks fantastic!

Wow! Just two of many lovely comments I’ve received since Soundz Off was featured in the 100th issue of ‘Action on Hearing Loss’ magazine which came out yesterday.  The site was very positively reviewed by Jean Straus in the “Time In” section on page 36 and described as: “just what the doctor ordered”.  Great publicity!

It means a huge amount to me that other people are finding the site useful.  One lady (deaf since the age of 2 and knows a huge amount about hearing loss) still founds lots of new information to help her which makes me feel a huge sense of satisfaction.  Another lady said that it will be a constant source of reference to help herself and her daughter ….. RESULT!!  If my site is already helping people, then it’s doing its job!

Another benefit of the site is that it’s not just helping other people but it’s also hugely helping me.  I’m more informed and empowered about the latest news on hearing loss than I’ve ever been before – keeping an eye on news sites every day (looking for titbits and scoops for the Soundz Off Facebook page www.facebook.com/soundzoff) is opening my eyes to the massive amount of work being done by people all over the world.  There suddenly seems to be a tsunami of effort, determination and innovation heading our way!  Not sure whether this was already there and I hadn’t realised it or that it’s the perfect example of serendipity – whichever, it’s great news either way!

Unfortunately the AOHL magazine isn’t online yet but the review is shown below, page 36.  And remember to like and share our Facebook page too – thank you!!

AOHL article Nov 2014

Radio 5 Live asks deaf people to phone in about their hearing loss, doh!

Well it was an interesting day yesterday!  Facebook and Twitter vibrated with outrage as deaf people tried to get their heads around the latest lack of deaf-awareness by one of the UK’s national organisations.  I’m surprised you couldn’t hear them shouting!

Radio 5 Live Breakfast’s show asked deaf and hard-of-hearing listeners to phone in and tell them how hearing loss had affected their lives – what a ridiculous thing to say!  Apart from the fact that deaf listeners probably wouldn’t be listening to the radio anyway, how could they ring in when they couldn’t hear what was said?  You have to laugh or you’d go mad 🙁

The programme featured an interview with Roger Wicks, Director of Policy & Campaigns for Action on Hearing Loss, with a feature about David Hockney (the artist) about how hearing loss had made him feel isolated and withdrawn.  I’m sure it would have been very interesting if I’d been able to hear it! http://www.bbc.co.uk/radio/player/b04p55w4

Anyway, after lots of tweeting to and fro, BBC 5 Live finally set up a text message number and an email address so that people could write in with comments and reactions.  It took a while but they got there eventually.  I think the reaction from their audience took them by surprise: “you’ve managed to alienate the entire deaf community” was one response … no pulling punches there!

So, the good news is that BBC 5 Live is going to go away and do their research then feature hearing loss again when they’ve got all their ducks lined up in a row properly.  Raising the profile of hearing loss is great and so I’ve asked if they can get live captions set up this time so we can watch/read it as it happens, rather than having to wait a week for a transcript.  After all, it’s supposed to be Radio 5 Live, not Radio 5 in 2 Weeks’ Time!!!  We shall all watch with bated breath …..

open-mouth-and-insert-foot