Category Archives: charity

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

 

When you just HAVE to do something about hearing loss!

Over the years I’ve developed a twitchy antennae for anything ‘hearing-loss’ related.  I watch the latest news, follow the latest research, support campaigns and try to raise the profile of hearing loss generally.  I’ve signed petitions and taken part in campaigns, organised loop squads, raised money, challenged discrimination when I see it and have been a what you might call ‘low-level agitator for change’ for some time.

But now I’ve decided that I’m ready, finally ready, to get out there and promote HEARING LOSS in big capital letters by volunteering to be a Trustee for Action on Hearing Loss.

Anyone with hearing loss knows that we all have to put up with so many things which are wrong – no subtitles on television and films, lack of understanding by the general public, threats to funding for hearing aids, noisy environments, feeling left out of conversations …. the list is endless.

Coming out of the ‘hearing disability’ closet is never easy – there have definitely been some highs and lows – but as I’ve ventured further out into the light and actually begun to take a lead in raising the profile of this invisible disability, I’ve realised I want to help those millions of people, just like me, who are still stuck in the shadows or not coping well with a life affected by hearing loss, tinnitus and deafness.

Action on Hearing Loss has fought hard to challenge these discriminations for more than 100 years (the RNID was started in 1911). I’m proud to be a member of this outstanding organisation … but now I want to do more.  I want to make discrimination on hearing loss obsolete, I want to help influence the movers and shakers who can make a difference to our world, I want to make life easier and better for TEN MILLION PEOPLE in the UK who find themselves struggling through no fault of their own.

And if this sounds like it’s a lot of “I want”, well that’s because it’s true.  Yes I could bore you all silly with a recitation of my CV, my strategic and operational knowledge gained through the school of hard knocks and 30 years of working in the corporate, SME and third sectors.  But it’s not about that – it’s not even about me at all really.  It’s about YOU, about YOUR life, about the help YOU need to cope better with hearing loss, and about how I can help YOU.

I believe passionately that our world can be better, that with the help and support we need, we can all live a happier more fulfilling life, even if we have hearing loss.

So, if you’re a member of AOHL, and you can hear the passion in my voice and think to yourself: “that sounds like some-one I want in my corner,” then please put a cross next to my name in your ballot box and send your envelope back to AOHL as soon as you can.  I don’t know everything, I’ll have a lot to learn, but I promise you this: if you vote for me, you’ll never regret it.

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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

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

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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

Amazing apps in the pipeline

One of the things I do as part of keeping the Soundz Off website up-to-date is to trawl through the latest news on hearing loss every day to keep up with what’s happening with new technology.  It’s amazing what you find!  This week I’ve found two really useful apps which will make it possible for deaf or hard-of-hearing people to have conversations with other people again – both on the phone and in group situations.

My inability to hear on the phone has been a real bugbear for about 18 months now but, fingers crossed, this problem looks like it’s going to evaporate into thin air in the next couple of years thanks to a great new app which has just raised funding through Kickstarter to launch a prototype in early 2015.

RogerVoice is the first worldwide app to transcribe live telephone conversations into text (using voice recognition software) allowing deaf and hard-of-hearing people to read the other person’s comments on their phone, tablet or PC almost simultaneously.  No more delay while a third-party human relay assistant transcribes the call … I find this absolutely mind-blowing!  Plus it already translates into 150 different languages, wow!

Most people take telephones for granted but, for me, the freedom to pick up the phone and call a friend, chat with my Mum, ring for a take-away or complain about my internet service (that’s another story) has long been a distant memory.  To think that I can soon re-join the world of the telephonically connected has me dancing up and down with joy.  Check it out at www.rogervoice.com

Another interesting app is transcence which acts as a speakerphone and transcribes group conversations into text so you can see which member of the group said what.  There’s nothing more dispiriting than sitting in a group and feeling left out as you fail to keep up with the conversational ball while people laugh and joke (I always miss the punchlines).  This will make it possible to feel like one of the ‘gang’ again – yayhay! www.transcence.com

These modern aids to technology are amazing – created by and for people who are deaf or have deaf friends or family – and I’m so grateful that I live in an age where these technological advances are possible.

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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

Laugh? I could cry!

I’m really getting my head around this new Soundz Off WordPress blog now – it’s actually quite easy once you know what you’re doing – so my next technical challenge is to get this new blog to appear on the Soundz Off website www.soundzoff.org rather than the old blog that was there before.  I can honestly say that having hearing loss has forced me to learn more about new technology than anything else would ever have done, including learning about:- hearing loops in public places including teaching supermarket and hotel staff what loop systems are and how they work; trying out personal listeners; experimenting with dozens of different types of phones for hard-of-hearing people; how to link streamers to televisions; ipods and TVs; how to link iPods to my personal loop so I can listen to music on aeroplanes without being deafened by the sound of the plane engines; writing blogs and linking them to websites; linking websites to Facebook pages, LinkedIn pages and Twitter; learning how to Tweet (cheep cheep); linking my iPhone to anything and everything wi-fi; the list is endless.  I can honestly say that the majority of people would have given up and gone home by now.  Sometimes I feel like screaming (or crying!).

I guess it’s all fuelled by my absolute determination not to let hearing loss get the better of me or hold me back from doing anything I would have done before.  So to all you folks out there who think you’re having a bad day??? You have no idea!  Laugh? I could cry 🙁

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Elton John warms the cockles of your heart!

Hearing loss involves a constant litany of struggles against ignorance, unequal treatment and downright discrimination – the battles we all fight on a daily basis sometimes just get you down.  HOWEVER!  You never know what you’re going to find when you start looking around to see who else is involved in the world of hearing loss and I’m constantly delighted by all the positive work being done around the world to help others with hearing loss, even if you never seem to hear anything about it.

A recent article in the Daily Mail about a deaf woman with a hearing dog was cute … so far, nothing new.  However, the hearing dog is blind – so he acts as her ears while she acts as his eyes for him in return!  How lovely is that?  http://www.dailymail.co.uk/health/article-42631/Guide-dogs-hard-hearing.html

Or have you read that wonderful article about Elton John and his husband, John Furnish, who support The Starkey Foundation to provide hearing aids to deaf children in the third world, helping them to hear for the first time.  http://www.express.co.uk/news/showbiz/495842/Elton-John-helps-deaf-children-to-hear-for-first-time

These stories really do warm the cockles of my heart!

Starkey Hearing Foundation