‘Rock singer’s hearing loss is an important moment for change’ by Stu Nunnery

Here is one of the many vital reasons why each and every one of us needs to look after and protect our hearing, written by Stu Nunnery for the Hearing Like Me blog.

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The lead singer of rock group AC/DC, Brian Johnson, was told recently by his doctors that he risked total hearing loss if he continued to tour and perform with the band. What seemed like an individual musician’s tragic heartbreak has turned into a cause célèbre and is resonating throughout the music industry. And that’s a good thing.

Specifically, Johnson was advised that if he continued to perform at large venues, he risked total deafness. He later told Rolling Stone magazine, “While I was horrified at the reality of the news that day, I had for a time become aware that my partial hearing loss was beginning to interfere with my performance on stage. I am not a quitter and I like to finish what I start, nevertheless, the doctors made it clear to me and my bandmates that I had no choice but to stop performing on stage for the remaining shows and possibly beyond.”

But many things have been said since then, that has brought into view a slew of issues that all musicians, those who listen to music, and those who attend concerts might keep in mind – for the “times, they are a changin’.”

Denials, disclaimers, accusations, medical claims, offers of help and proactive moves have flowed in as a response to the rock singer’s hearing loss predicament. There’s even been some fun thrown his way when it was satirically announced that AC/DC would “replace a singer who could not hear with a singer who could not sing.” (Axl Rose of Guns and Roses)

Later, in an interview with a friend, Johnson claimed that his hearing issues were being blown out of proportion and that he was being unfairly released by the band. Another doctor told him that his hearing damage wasn’t as bad as he was initially led to believe and that he can continue to record in studios and he intends to do that. But the band has said no more. Johnson remains hopeful.

There was also apparently more to the rock singer’s hearing loss story than originally divulged. In a 2014 interview with celebrity interviewer Howard Stern, Johnson dismissed the loud music and the use of cannons as stage props as the cause of his hearing loss. He said that he believed that it was the result of “sitting in a race car too long without earplugs. I heard me eardrum burst, because I forgot to put me plugs in under my helmet. That’s how it happened. Music had nothing to do with it.” When asked about the tinnitus he was experiencing, he told Stern, “Ah, you know, you forget about it after a week.”

What is clear from all this are several things. One, knowing the cause(s) of your hearing loss is important. It’s also important to have a professional diagnose your problem. Have you gotten additional opinions from specialists in the field? Whose opinion will you listen to? Additionally, what methods of treatment are being recommended? How do you know what treatments will work best for you and who should administer them? In short, what is the best strategy to avoid hearing loss and what is the best way to deal with the situation after experiencing hearing loss?

It’s not a simple thing and many musicians, myself included, have experienced their own catastrophic hearing losses at pivotal moments in their careers – whether from loud music, canons on stage, race cars,  or the sudden hearing losses that can appear from any number of maladies. I knew I was in trouble during a jingle recording session in 1978 when the hearing in my left ear started cutting out and I began losing correct pitch. It was a quick downhill from there. A year-and-a-half later I had to quit music altogether – with hearing loss in both ears and severe tinnitus. It happened not only at the worst possible time for my musical aspirations, but it was still the “dark ages” in hearing-music research and advances, and I had little help to guide me through the woods.

Today’s circumstances are far better and Johnson may have hope and the help he needs.

And fortunately for all of us, more influential musicians are being proactive to protect themselves and others from the effects of loud music. The band Pearl Jam has joined MusiCares to provide earplugs to all attendees of their upcoming tour. Foundations such as Hear the World also distributes earplugs at live music venues and festivals around the word.

“Don’t be careless and lazy at loud rock shows or cranking tunes through an old Walkman like I was thirty years ago,” said Pearl Jam bassist Jeff Ament in a statement. “Wear hearing protection or you’ll end up with a 1.5k ring in both ears every night when you go to bed or worse when you are trying to enjoy the serene quiet of an empty desert or forest, again like me.”

Producers and DJ’s who have long understood the benefits of ear protection are also becoming more forthcoming about their own strategies and are helping to identify the wide variety of hearing protection now available.

Out of Johnson’s tragedy may come some very important information we can all pay attention to. As we follow his story it would be a good thing to see ourselves in his position. You don’t have to be a rock star to suffer his fate or the confusion that often follows.

Stay tuned.

by Stu Nunnery.

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‘EU Referendum in BSL Survey’ by Drip Media

The EU (European Union) referendum leaflet is in just written English, large print and audio CD. There are no visual materials for those who rely on sign language hence why, I support this video by Drip Media in trying to gauge just how many people would like to see the same content available to them so they too, can make an informed choice however which way they would like to vote.

Their video is in BSL yet it is captioned to be inclusive of all.

Please complete their survey in order to assist them in achieving what I hope, will be a successful and fair result. This will only take a minute of your time.

http://www.dripmedia.tv/eureferendum

Thank you for your time and patience.

~ SJ (Sara Jae)

‘Confessions Of A Raving Lunatic’ by Lesley Kiddell-Spencer

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Lesley Kiddell-Spencer and her darling grandson.

Bit about me, I went deaf at seven (that’s not great when you are a Dr Who fan and love music) due to meningitis of course. I have two deaf children (who married deaf spouses) and I also have five grandchildren, all deaf except one. I tell my daughter-in-law, Kaizen must belong to the postman, so you see I have my very own deaf club.

Married 3 times, only one of whom was deaf, I tend to trade them in when they fail their MOT, but my current one is a lovingly restored classic car so he will be fine.  My first husband had to deal with me blasting the chicken instead of basting it as I read the recipe book wrong and he couldn’t understand why I kept going to the kitchen to switch the oven on full blast then back down again. My current one who I met on a dating website had a heck of a shock coming face to face with a whole deaf family when he had never met a deaf person before…you can imagine communication was hilarious.

I am old – 55, and have spent the best part of my life fighting stupid systems made up by idiots with nothing better to do.  I was in the radical FDP – that was a brilliant time, thousands marching for recognition of British Sign Language, I had to make a speech at Trafalgar Square, so I was plied with whiskey beforehand by the other committee members as I was a wreck, and can remember nothing of it except I probably made a right idiot of myself.  We were in the media often… ‘Lesley and her comrades’ in the Guardian newspaper (their words not mine but boy did it turn me into an egoistic eejit) I still smile about that now.  However my life is like the Coldplay song “Viva La Vida” go read it and you will see the higher up you go, the greater the fall.

I have long since learnt, everyone is different, now that was hard because I wanted everyone to think like me because they jolly well should, people can be wonderful, and on the other extreme nasty.

Ten years or so ago I jumped out of my ivory tower as CEO of a deaf organisation and regenerated myself as a female Lovejoy, becoming an antique dealer which had always been my passion. I get hold of the most weird and wonderful items, and meet equally weird and wonderful people, however the antique world is a bit like the Mafia. Fortunately, I have blonde hair, green eyes (never mind fat and 5ft) not to forget deaf so I have been adopted very well, and boy do I play the deaf card, otherwise I would have found a horse’s head in my bed by now.

In my spare time I also take all kinds of deaf people on guided tours of the Richard III centre in Leicester – a man I totally am in love with, despite the fact he has been dead some 500 years plus. Yes, I am eccentric too. Or you can find me in a field full of people and mud, digging up the past with archaeologists (no, I promise I don’t pinch the stuff to sell!) I once found some bones in a Roman children’s cemetery and I was scared stiff, until they told me it was an expired rabbit.

What do I want to see? Utopia, where everyone gets on and dances around with flowers in their hair singing and kissing, but oh my days that’s never going to happen.  Technology has brought out a terrific change for deaf people, but with that has come out a new kind of nastiness with respect, morals and tolerance flying out the window into cyberspace and I sadly realise deaf people are never going to unite.  I fortunately have thick skin but many younger than me do not and are open to attacks, which can seriously cause a lot of grief, we have sadly reverted back to school day bullying.

As for expecting the whole world to change to understand hearing loss, and go mad, when they don’t… I was once like that and believe you me it is arrogant to think that because no one has the right to expect everyone to revolve around you – even if you are disabled.  All minority groups have these issues, it’s just a case of trying to teach and have an open mind.  There will always be downright rude nasty horrible people, I was probably one myself and so were you… I learnt to cut out the negative influence in your life.

I saw a saying recently which sums me up perfectly

“Don’t confuse my personality with my attitude… My personality is who I am, my attitude depends on who you are”

by Lesley Kiddell-Spencer.

‘For Better Or For Worse’ by Robert & Helen Oxlade

World Ovarian Cancer Day (WOCD) falls annually on the 8th of May.

Back in 2014, her darling husband Robert, in a bid to raise awareness, shared Helen’s story on Facebook. We at ‘The Tree House’ wishes to help Helen and Robert, raise even more awareness regarding Ovarian Cancer by bringing their experience, to your attention.

8th of May 2014.

Today is World Ovarian Cancer day, and it is today that we are telling everyone on Facebook Helen Oxlade’s story. If you only read this far, please go and see your GP if you think you have any of the symptoms of ovarian cancer – http://www.cancerresearchuk.org/cancer-help/type/ovarian-cancer/about/ovarian-cancer-symptoms

After Helen and I were engaged in 2011, and with Helen’s Mum and my parents’ blessing, we started to try for a baby. Sadly, we didn’t seem to have any luck, so Helen went to the GP to start to investigate why.

As part of the investigations, Helen’s various blood tests didn’t show any cancer, however there was a tennis ball sized cyst on one of her ovaries, which in turn had moved and attached itself to her womb. The ovary and cyst were removed in March this year. We were given the life changing news ten days later.

Although they think it was contained to the ovary they removed, Helen has early ovarian cancer. This was only half of the news, since part of the treatment was a hysterectomy as quickly as possible, to prevent the cancer spreading. The doctor told us that we risked Helen’s life trying to save any eggs, so that wasn’t an option.

The 14th of March 2014 was the day our hopes and dreams of having our own family were shattered, and our lives turned upside down with uncertainty for what will be happening in the future.

On the 23rd of April, Helen returned to hospital for a hysterectomy. There were quite a few complications, but she is being strong, and is slowly recovering. Thank you to all of our friends who already know, and have offered their help and thoughts.

Tomorrow (9th of May) we return to the hospital for the results of the biopsies taken during the hysterectomy. Given our situation, I believe we have been lucky, and have caught the cancer early. Ovarian cancer is one of the more aggressive cancers, and often goes undetected. All women are able to get this horrible cancer, so please, if you think you have the symptoms, go and see your GP.

This is most definitely the “for worse” bit mentioned in our wedding vows. I hope she knows how much I love her, because sometimes I’m distant and hiding in my shell with worry, but I think and hope we are going to be very lucky.

Please like and share this video so that we can help spread awareness of this terrible cancer.

By Robert and Helen Oxlade.

Exactly one year after the dreadful news of the ovary biopsy result Helen was given, she admirably made another video.

We are truly honoured, being able to share Helen & Robert’s experiences, with you. 🙂

‘Rant of The Day’ by Suzie Jones.

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My rant for today – as a deaf person and it’s public. Everything in life should be accessible – from the bank to the Government to the public meetings everyone is entitled to attend – to the opportunity to go to the cinema, to the gym – or a counselling 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 conversation 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.

By Suzie Jones, who is one of the founders of ‘Pardon’ and believer in equality for ALL of us – deaf and hearing.

Name calling by Paul Leonard

Not blogged in a while – maybe I am becoming more placid, busier (that is true, I have),  finding more “stuff” to occupy my time with – who knows?  What I do know is last week, I was riled with our glorious NHS.  My leg operation got cancelled, again but that is a whole other blog post which I could write when I am in recovery.

For now though, I want to moan about another aspect of the NHS – audiology centres. Following the cancellation of my operation, my wife needed a new tube for her hearing aid because it had broken.  Fair enough, so off we trot to the audiology place – just a small walk away.  In the morning they have a walk in centre, great I thought, no appointment needed.  What I didn’t know until we got there, was the absolute shocking deaf awareness!  This is a place where people go to get aids to assist them to hear.

The receptionist who greets us, exaggerating her lips, “whattt issss yourrr name pleassse”?  Not even a basic BSL greeting with voice, “Your name what?” – NHS, your first fail, please learn basic sign language!

In the waiting room (I should have taken a photo), they have a massive TV which lists patient’s names.  On a piece of paper underneath it says that the screen is only used for appointments and not “walk in” patients – NHS, your second fail.

I find out whilst waiting that in all the times, she’s been to the clinic, not one member of staff has even a tempted a bit of basic BSL with my wife – really?!  I am shocked.  NHS, you suck!

The audiologist comes out and calls out my wife’s name, not particularly loudly either (or maybe I’m gong deaf!?) – So a profoundly deaf person in there, unless they have eyes like a hawk, the second someone comes out would miss their name being called – NHS, you screwed up again!

We go into the room, by which time my blood is boiling and so I feel that I have to bring up all these things.  I bottle it all, apart from the non functioning TV with the lack of names – “well, we use 6 different systems and the TV only works for people with appointments and not walk in patients”.  Fair enough, I calmly explain to her, but why can’t you even write names on a piece of paper like at the airport, “oh I didn’t think that!”.  Really?!

Why don’t the NHS attend basic BSL courses or at least a basic deaf awareness course?!  I know, I am going to Bangladesh to go and work with the locals where only about 2% of the entire population speak English …

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… or maybe work at the airport collecting passengers whilst showing their names on a placard!

~ Paul Leonard

Therapy, The Deaf Way.

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By SignHealth.

Over the past few weeks I have seen a campaign by SignHealth and their supporters from within the deaf community, steadily grow.

I wanted to share with you, my personal experience.

At one point last year, a deaf friend was concerned enough to put me into contact with someone offering their professional help except, how could I talk to them when their sibling was one of the bullies? The deaf world was much too small, typical and predictable for my liking. I felt extremely claustrophobic.

Eventually, my GP referred me for counselling to help lift me out of my depression and certain trains of thought. Members of the deaf community had brought all of my life altering experiences on so it was only natural for me to want to stick with a local counsellor, who was hearing and had very little (if no) experience with deaf clients.

My counsellor began the first of our many intensive sessions, asking if an interpreter should be present to help us communicate with ease. This was enough reason to make me clam up. I refused their offer politely and asked if we could continue without one, as I was confident it would work.

I did not at the time trust anyone that had any connections to the deaf community; enough to be anywhere near me. Not even an interpreter bound by confidence because they too, I could not trust.

In time, my counsellor’s deaf awareness grew with each session and once they took me by surprise by saying, “I am glad we didn’t use an interpreter because you would not have told me everything. You would have been extremely cautious. I did not think our sessions would work without one and you proved me wrong. You have taught me that not every deaf person needs an interpreter present and not every deaf person relies solely on sign language.”

Their acknowledgement and increased deaf awareness made my heart smile. I suddenly felt freer than I had ever been and that feeling of being finally understood, not just me but the deaf community too, how diverse it actually is and how our needs and abilities differ, was priceless. This was therapy, albeit my way.

Each to the their own for reasons that should be known to themselves, only.

It is vital that we fight to retain our choice to be counselled however we wish, be it the deaf way or the hearing way in order to be at our most comfortable, for our therapy to succeed. And for that, we should be grateful such a service like SignHealth exists because they do work, for those who choose them. For those who need them. For those who solely rely on sign language, for they do exist.

No one deserves to be ignored.

I wish SignHealth all the best with their latest campaign, to continue providing “a national psychological therapy service where all the therapists are fluent in British Sign Language (BSL)”.

#TherapyTheDeafWay

Finally yet just as importantly, I would like to applaud SignHealth for adding captions to their videos, making it more inclusive and accessible to all. Thank you, for doing so. 🙂

~ SJ (Sara Jae)