Over the last few months I’ve been having an on-going debate with Access to Work, the government organisation which provides grants to help people get work, stay in work or start their own business. As a self-employed management coach, losing my ability to hear on the telephone has been a real bummer – how do you contact potential new clients when you can’t hear on the phone any more?
So, I investigated AtW and discovered it was possible that they could fund a virtual PA who could answer my telephone calls for me. That would work! I did lots of research, found someone suitable, prepared my application and applied. For £70 pcm I could get all the help I need, my problem would be solved and life would go back to semi-normal …. the holy grail. But no joy – I was refused. The reason was that they wouldn’t fund somebody to do my job for me. Well I didn’t WANT them to do my job for me – I can do my coaching without help – I just can’t hear on the phone so need somebody to be a pair of ears for me. I appealed, but still no joy. They wouldn’t budge.
Finally I managed to get an assessment interview so we could discuss my problem and see if there was another solution and a very nice man called Graham came to see me this morning. Having heard my dilemma, it soon became apparent that there isn’t a technical solution to my problem (it’s not about volume for me, it’s about tone and clarity as my hearing loss is exactly the same frequency as that used on telephones to compress voices) but apparently AtW are very reluctant to fund ‘human’ solutions.
However, all is not lost! A glimmer of light at the end of the tunnel is certainly better than nothing and apparently AtW might consider funding the latest hearing aids, Amplifon’s ReSound Linx, which are iPhone compatible and allow you to programme your own equaliser and adjust tone/quality. Great! So now I’m back on the hunt to find a dispenser where I can try out these aids and see if they help. I’ve learned the hard way to temper my hopes and expectations against reality – maybe it won’t work but if I don’t try I won’t know.
£3500 for two hearing aids seems poorer value for money than £70 pcm for a pair of human ears for 4+ years but there you go. Nobody ever said the government was based on common sense! And if they don’t work, it’ll be back to the drawing board again but that’s a story for another day …..
Every week I check the newsfeeds to check out the latest research into hearing loss. I’m reassured by the fact that, all over the world, scientists are quietly beavering away to find ways to restore hearing and/or make life easier for people with hearing loss. As they work away in their labs and offices they probably don’t realise that millions of us are silently watching from the wings, willing them on, allowing ourselves to hope that a cure may finally be in sight.
Living within easy driving distance to The Stadium of Light football stadium, the home of Sunderland Football Club, I can’t help but be struck by how relevant their motto is to this situation. As they recover from a historic beating of 8-0 by Southampton FC last weekend, I totally sympathise with their supporters: “It’s the hope we can’t stand.” I know that hope can be a cruel mistress so do we all hope in vain or will we ever see a cure for hearing loss in my lifetime?
So today I was really encouraged by the news that scientists have used tamoxifen – a drug more commonly associated with cancer treatment – to restore hearing in mice using gene therapy techniques. The mice weren’t actually deaf – they had partial hearing loss – but it’s still an encouraging sign that progress is being made in restoring hearing. It’s amazingly hopeful!
Am I happy that mice are being experimented on in labs? Urgh, it’s a tricky one. No, not really, but if it can help find a cure for 360 million people across the world, I guess I have to re-adjust my values and beliefs system and let myself believe it’s all for the greater good.
So if you’re a scientist reading this, then you have my whole-hearted thanks, my total support, my understanding that you are generously devoting your life to improving the lives of others and the reassurance that 360 million people worldwide salute you.
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.
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.
Delighted to see that 121Captions has featured our guest blog on their website and Facebook pages http://121captions.com/blog/ It’s all part and parcel of getting the Soundz Off message out there. Thanks Tina!
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 🙁
One of things I find particularly ironic (and blood-boilingly irritating!) is when new services which are supposed to help the deaf and hard-of-hearing fail to take into account the fact that we’re DEAF OR HARD-OF-HEARING!!!! Here’s a perfect example, take the recently re-launched Next Generation Text Relay Service which allows deaf people to call some-one on a phone. Yippee – I jump up and down with excitement at the thought of being able to ‘hear’ all my phone conversations perfectly again! When it’s all working properly a remote operator listens to the replies (from the person called) and then types the responses so they appear on your PC or tablet and you can read (rather than listen to) what they are saying. Brilliant idea – sounds good so far yes?
Wrong! I’ve just spent half an hour reading through all the instructions, downloaded the app, tried it out and, guess what? No joy. If it all went to plan then your phone links automatically to the service and you are now in contact with the world. Brilliant, hooray….. but NO! You have to ring a special number to connect your phone to the NGTR service. Sounds great, I’m getting excited, almost there, but ….. what do you get? A recorded message saying …… what? I DON’T KNOW, I’M DEAF OR HARD-OF-HEARING!! How are you supposed to work out how to fix it if you can’t hear what’s it’s saying? It’s amazing there isn’t an iPhone-shaped indentation in the wall from being chucked across the room in sheer frustration!!
As usual, it’s up to me to sort it out myself. How will I do this? By roping in my long-suffering husband to sort out my IT technical challenges or by chatting to others in the same situation (and experiencing the same frustrations) on deaf and hard-of-hearing forums. So much for equal access to services!! It makes me want to spit tacks!
One of the things that really strikes me about the world of hearing loss is that there are so many other people out there in the same situation. Not only that, our shared experiences and access to modern technology can now bring us closer together with people we may never even meet! I started Soundz Off after many years of frustration at not being able to find the information to help manage my own hearing loss.
A few months ago I started chatting to a lady, Tabitha, on a Facebook site and we not only enjoyed ‘virtual chatting’ but we also brainstormed the type of things we thought a site like Soundz Off should include. The result has been a new lease of life for me – creating Soundz Off has made me feel empowered to actually do something about it, to create new links with people and organisations across the world.
I’m now getting messages from people and organisations worldwide asking if I can promote their products and services – I’m happy to do that because it makes life easier for others who are less technologically-minded or able to find that information for themselves. It’s a privilege to be able to share thoughts and ideas with like-minded people and to spread the message far and wide about our joint efforts to overcome the barriers of hearing loss. Not only that, together we can reach wider audiences and shout louder about all the wonderful advances in technology to make our lives easier.
As a Coach I always remind myself how every action I take moves me closer to my chosen destination – I turn anxiety into anticipation, I turn fear into energy/excitement, I turn worry into action. As I always say: take a chance … because you never know how perfect something may turn out 🙂
Once you start delving into the world of hearing loss you discover there are some amazing companies out there doing wonderful things to support deaf and hard-of-hearing people. Most of them were started by people who are either deaf themselves or who have hearing loss in their families – this gives them a unique insight into the communication barriers and problems we face on a daily basis.
121 Captions is a great example of a company getting OUT THERE and making a real difference in the lives of others. Using the latest technology, 121Captions provides accurate live captions (within 3 seconds) of the spoken word (in 15 languages!) in meetings, conferences, phone calls, lessons, lectures – you name it, they caption it! It’s not only useful for anyone who finds it hard to hear properly but also for people who need translation into another language. In addition they provide specialist communication support such as lip-speakers and sign language interpreters as well as lip readers in court to help translate CCTV footage. Amazing career options we were never told about at school!
121 Captions also does fun translations for the media – for example, lip-reading footballers at the World Cup (even though most of us could work out the swear words ourselves lol!) Quite often I suppose these companies start because somebody is passionate about overcoming barriers that they’ve experienced themselves … and overcoming something they thought they couldn’t ever do.
As a coach I’ve always been fascinated about why some people succeed and others fail, even if they face the same difficulties in the same circumstances. A favourite phrase of mine is : “What you think is how you feel” and it’s never been more relevant then when you have hearing loss – if you think everything’s hopeless, then it probably is. If you think “I’m going to overcome this” then you usually do! 121 Captions kindly invited me to write a blog for their website and what goes on in our heads sounds like the perfect topic! Read it here: http://121captions.com/blog/
I’ve often wondered what it is about hearing loss that makes so many people ashamed and want to hide their hearing aids. Are walking sticks objects of derision? Are wheelchairs ugly? Are false limbs funny? NO! So what is it about hearing aids that makes people want to cover them up?
Perhaps it’s the long outdated association of hearing aids as big, flesh-coloured, pink, plastic objects worn behind the ears of ‘old people’. Well folks, it’s time to wake up and smell the coffee! You constantly see people listening to music with ear-buds in their ears while celebrities and famous people wear coloured ear buds on TV and Youtube all the time – it’s finally become ‘normal’ to see people with some kind of widget in their ears and nobody blinks an eye. This has hugely reduced the stigma of wearing hearing aids and there are some amazing hearing aid designs out there now. There’s also a huge range of colours for hearing aids and cochlear implants such as blue, pink, red, orange, neon, silver, tiger-eye – and some very creative folk making all kinds of accessories and jewellery to bling them up.
Did you know you can decorate your hearing aids with nail foils and crystals, get hearing aid jewellery charms, glitter moulds, coloured tubing, hearing aid scrunchies and tube twists? Have you ever thought about pimping your hearing aids to match your outfit or wearing Hearrings to express your individuality in the same way that people wear fashionable spectacles? It’s particularly encouraging for children and teenagers who, instead of being bullied for being different, are now being envied by other kids who want to know where they can get these hearing aid charms from – Disney characters, princesses, spacemen, cats, dragons, Superman … you name it, there’s a charm for it! Hearing aids are finally – HALLELUJAH! – joining the modern fashion world and coming into prominence in a way that’s never been seen before.
The rise in popularity of ear cuffs is also driving the idea that a hearing aid can be a thing of beauty rather than something to hide – the photo on the left is a great example: how sexy and elegant is that!?! From my own point of view, it’s pictures like this that make me realise that I don’t have to hide my hearing aids any more either … in fact, as a self-confessed jewellery addict, the only question is: where can I get me one of these!!!