‘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.

Part II of ‘Whole New Take On Glue Ear’ by Carl Gammon

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As promised at the end of my first article, here is part two of my ‘glue ear’ journey.

I have now had the surgery on my ear (Tuesday 10th May) and have now recovered from the effects of the anaesthesia.

It was an interesting day to be fair… it all started first thing when my brother very kindly took the day off work to drive me the 7 miles to the hospital at 07:30 for an 08:00 appointment.  As you can imagine I arrived in good time and was immediately checked in.

I was asked by a hearing aid wearing receptionist, what I was in for? I replied “For my ear” and showed her my other hearing aid clad ear… “Arrr right thank you.” came the reply…  I didn’t think much of it at first but every time I was wanted, the nurses came right up to me and tapped me on my shoulder to make me aware of the next step.  Never had this happen before – they usually just stand in the corner and speak and hope I hear them (which is hardly ever)

Anyway, I saw the anaesthetist and the surgeon and was given the go ahead to have the procedure.

I was called to go and get changed and I walked to the theatre at 10:05am.

I was then woken up at 12:43pm by one of the nurses who handed me my hearing aid.

I’m not 100% sure what they were doing in my ear all that time. However, I have been told that my eardrum has been removed and a new one put in. It is absolute heaven not to have any pain from it – finally.

Obviously, I won’t know exactly how successful the surgery was until I have the follow up in 3 months’ time… Fingers crossed.

What I can already tell… is the Tinnitus in my right side is now even more annoying! In addition, my voice sort of feels lopsided (if that makes any sense) and I have some issues with dizziness if I stand still… but other than that, I feel fine. 🙂

Thanks for reading. X

Carl Gammon.

‘That Long and Winding Road…’ by Mervyn James

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That Long and winding Road…

Has nothing to do with this article, I just like the tune…. 9 out of 10 people I meet have no idea I am profoundly deaf,  I could easily make them aware by using sign language, but people tend to put a label on you as a random member of some subculture based on not hearing anything if you do that, and I’d rather be seen as an individual who just happens to have a profound hearing loss.

People in my position and indeed, millions of others with various degrees of hearing loss, suffer huge issues of poor support and access where it counts, e.g. 999 areas and GP’s etc, even opticians and dentists don’t support you to have those all-important tests we all need.

Have you tried lip-reading your optician in the dark with one eye closed up half the time and with a test card written in Croatian? You take the point. Or the Dentist with their masks one, they don’t call me Gummy as a term of affection, they just keep taking them out till they get the right one.

Not even disability support areas and the Local Authorities provide what you need, either because the charity hasn’t the funds to pay for it, or the LA is unsure if you making an enquiry puts the onus on them to assist you, of course cuts affect everybody but we are always back of queue by default, because of the difficulty in defining the type of support you need, and, the actual availability of it.

By comparison, if you are a deaf person who relies entirely on sign language then you are 25 times more likely to get supported than I am, because my lip-reading is getting worse, and the access to text support is almost non-extant in Wales. Alternatively insist you are an illegal Migrant who speaks only an obscure dialect of Bantu and is a relative of Winston Churchill, then they queue up to help apparently.

I’ve lost count of asking areas for text support and then being offered sign language instead, it’s a bit like a Welsh speaker being offered a Spanish interpreter. As people with profound loss, we are easily identified as shoppers who only use supermarkets and always offer high denomination notes or coins in payment regardless of cost. That is because if we guess wrong how much the price is, we are up against it in communication terms. My biggest bugbear are shops that won’t just take your money for goods, but launch into lengthy discourse regarding BOGOF offers or what cards do I use or want, if you say you don’t have a  loyalty card they start thrusting papers at you to get one, I said you want my loyalty try to communicate properly.

I’m then in trouble because I cannot follow properly and there is some queue behind me, getting annoyed, and asking which planet I just arrived from. I usually say Neptune or Blaenau Ffestiniog and that seems to satisfy their curiosity…

My speech is OK, I’ve got a PhD in mumbling… although speech is an issue, because then people assume talking equals hearing and get angry when you cannot reply properly after.

No two people are the same, bit of a bugger but…. Sadly our Hard of hearing people suffer a great deal of denial, this is down to the fear of looking stupid to other people, ergo YOU.   Manufacturers of hearing aids hone in on that and we all see the adverts for ‘Hidden Hearing’ etc, which to my mind panders to that view. Why hide your hearing loss and then STILL look stupid if you miss something?  I’d be banning hidden hearing ads, I understand making them less obtrusive and even miniature, it’s an advance, but what you cannot see, you do not understand that’s the issue, and Hard of Hearing still insist they can hear everything so ask for it really.

This week is officially ‘Deaf Week’ but you won’t see me taking part in it, you will probably see a lot of deaf people signing who are an hyper-active but minor cultural promotion area, and of course charities promoting their wares, having assistive dog shows, and fund raising too.

Be aware lip-reading isn’t an exact science either, unless following less than 30% of anything spoken will do for you, or you have advanced A level in ESP studies. Mine goes from 24% to zero mostly. Then the ‘Nod’ kicks in, and everyone assumes you are either the worlds’ most attentive listener (and polite with it), or vying for pole position in the Village idiot category.

Lip-reading isn’t possible if you have your back to us, you are eating at the same time, or a poor speaker anyway. Goldfish impressions tend to look better on the fish to be honest. Don’t go with the Mime approach unless your name is Marcel Marceau…

On the roads, please spare a thought too, that person in front of you may be deaf we don’t have a label on our backs with ‘I’m Deaf please pass carefully.’ on it. So don’t just push us aside, or run your prams and buggies into us because we haven’t moved out of the way quickly enough. If you try, I’m liable to trip you up as you pass and blame the dog. Or if you have a wheelchair, I will almost certainly let your tyres down.

Statistics suggest one day it will be you too…  then remember what goes around comes back at you! What we need most is your patience, and a little extra time to ensure we know what is being said, thank you. I’m not ignoring you, (at least not today, I may well do tomorrow), but I really cannot hear you…

By Mervyn James….

 

‘Start With A Smile’ by Emily Owen

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On May 11th 2016, Emily Owen’s book called “Still Emily: Seeing Rainbows in the Silence” will be published.

Emily, who is deafened, was asked to give some tips to hearing people for when they meet someone who can’t hear. See what you think and let us know if you agree or not? 🙂

Start with a Smile

I could hear.

Then I couldn’t.

Overnight, I’d lost my hearing.

All of it.

I was deaf (still am).

I joined the 11 million people in the UK who have less than perfect hearing.

When I eventually began to emerge from the shock and depression and scariness of sudden silence, I picked up my ‘surviving hearing loss in a hearing world’ guidebook.

Or I would have done, had such a book existed….

The first time I told an assistant in a shop, “I’m deaf”, she looked terrified.

It was like looking in a mirror: I was terrified, too.

Where did we go after “I’m deaf”?

Neither of us knew.

I knew I could verbally tell her, “I’m deaf,” because I grew up with hearing and speech.

She knew she could hear me say, “I’m deaf,” because, well, she could hear.

What we didn’t know was how to bridge the hearing/deaf divide.

How to meet in the middle.

How to co-exist.

Since that day, I’ve had two choices.

  1. Become a hermit.
  2. Compile a bit of a guidebook of my own.

Tempting though option 1 often is, I went for option 2 (most of the time).

The first entry in my guidebook says, ‘remove the full stop after “I’m deaf.”’

Here are three tips for (hearing) people when they are met with the terror of hearing, “I’m deaf.”

Three tips for removing that full stop.

  1. Remember to relax.

Unless you happen to have a PHD or equivalent in communication, no one expects you to be an expert in dialoguing with deaf people.

We get that you are probably out of your comfort zone when you meet us.

Believe it or not, so are we when we meet you!

We don’t automatically know how to bridge that divide either.

But let’s start with a smile.

  1. Remember that communicating is about getting a message across.

If you and I can work out how you and I can bridge that deaf/hearing divide, that’s enough.

I speak a bit of sign language. My god-daughter doesn’t.

One day, in an effort to get me to understand the thrilling-to-a-three year old tale I kept misunderstanding, she resorted to waving her arms around.

She was trying to copy sign language.

She looked more like an over worked windmill.

But the combination of seeing her lips and seeing the windmill actually helped me.

To my shame, I can’t now recall this story that so obviously rocked her little world.

But I know I understood it at the time.

I’m also pretty sure that not many people use the windmill method.

And that’s ok.

In our own way, message was received and understood.

  1. Remember that we’re all different.

So you met someone last week who was deaf? And they could lipread what you said to them? Well that’s great. But, guess what?

We can’t all lipread.

A bit like just because some people can sing Opera, it doesn’t mean everyone can.

Some of us who can’t hear prefer to lipread, some prefer things written down, some prefer sign language, some prefer typing, some prefer….

Obviously, unless possibly you have the aforementioned PHD, no one expects you to be fluent in sign language but we’re pretty sure you can write things down. Or type them into your phone.

A good way to get started is to write/type, “how do you prefer to communicate?”

*note the question mark, not full stop*

And don’t forget your smile……

by Emily Owen.

 

If you wish to view Emily’s book via Amazon, please follow this link: https://www.amazon.co.uk/Still-Emily-Owen/dp/1910786438?ie=UTF8&qid=1462190333&ref_=tmm_pap_swatch_0&sr=1-1

Or alternatively, via Wordery, please follow this link: https://wordery.com/still-emily-emily-owen-9781910786437

‘Our Journey To Equality’ by Steven Mifsud, Founder of Direct Access Consultancy

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Mr Steven Mifsud

Slowly approaching the tenth birthday for Direct Access Consultancy, it has been an amazing adventure, but I can tell you it wasn’t easy. Over the last 10 years, we grew and grew, battling difficult times and overcoming tall obstacles, now we have provided access audits and access consultancy for over 10 Local Authorities/Councils, over 10 housing associations, over 650 schools and more than 2500 buildings.

My name is Steven Mifsud, I started my higher education life with an architectural degree, little that I knew, I would end up here running the company I started so many years ago. A few years after I finished the last minute exams and late night flat parties, I started working for Chester City Council (now known as Cheshire West Council) as an Access Officer. This effectively acted as my entry point into the disability access world as I was sent to take care of many community projects. Though it was a great experience, I was beginning to get fed up with the speed of that I was limited to by the red tape.

During my time as an Access Officer, I was head hunted by a large consultancy based in London, which gave me some great opportunities such as surveying land mark buildings. Within this time, I also managed a 300+ access auditing project for Brighton & Hove Council. Times were good now, but I felt something was missing. Unfortunately I was extremely frustrated that I was never with my family, more particularly my daughter Georgia. The work was also extremely deadline driven which a lot of the times meant to compromise the quality of the access audit reports in order to retain employment status.

Now, this is the good bit, one day I was approached by a large department store to undertake some access audits for them; thus how Direct Access Consultancy was born. After working for the consultancy in London, I learnt that access audits deserve precious time rather than rushing each project in the goal to finish more jobs, quality over quantity.

One job after another, year after year, the company grew and expanded and is now lead by myself with Judith acting as my communication support worker due to my hearing impairment. There has been some highs such as delivering a speech in Qatar on Accessible Sports on the behalf of the UKTi and extreme lows such as fractured family relationships due to my loyalty to Direct Access. The highest points in 10 years was not being privileged to access audit world famous sites such as The Roman Baths but hearing real sound for the first time in my life by having a Cochlear Implant and meeting my wife Judith.

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Judith & Steven.

I have built a company that is unique to our competitors, a disability access auditing service provided by people affected by disabilities, thus a unique edge and perspective to access projects. Disabled access auditing is for disabled people, so wouldn’t it make sense that disabled people are the best people to consult on how their lives can be made easier?

Yes, this is effectively my autobiography, but my life is basically the story of Direct Access Consultancy as I’ve devoted the majority of my working life being in the company. I love what I do as it combines my personal insight into disability, my passion for architecture and contributing to creating a society that is equal and fair regardless of what your physical difficulties may be. Here is to another 10 years of leading Direct Access Consultancy.

Steven Mifsud

Founder of Direct Access Consultancy

Read more about what Steven’s company does – http://www.accessaudits.com

They also do a lot of access audits for schools, over 800 to date.

One of their current key projects  – http://www.accessaudits.com/direct-access-appointed-access-consultants-for-new-victoria-square-development-woking/

A bit about what their access audits are about and what they entail – http://www.accessaudits.com/access-audits/

Some of the clients Steven have worked, including clients like Bodelwyddan castle, Roman baths etc etc http://www.accessaudits.com/our-clients/

Steven has also done a bit of free work (when he can) to help his local community such as Nantwich museum http://nantwichmuseum.org.uk/direct-access-audit/

‘Understanding Hearing Parents Of Deaf Children’ by Barry Sewell

When we published the piece by ‘The Deaf Terminator’, we were given a link to a video made by Barry Sewell, otherwise known as ‘The Holism’. We thought we would pass onto you, our readers, the link to the very same video.

“Recently much attention have been generated between AG Bell’s (Alexander Graham Bell Organization) and the culturally and linguistically deaf people, also known as the sign language community. AG Bell believes it is better to provide deaf children with necessary means and tools to learn to speak and hear sounds. However the sign language community believes it is better for deaf children to learn American Sign Language. Each sides have been vying for the most attention in the social media. They both are aiming for each other’s throats. Unfortunately it only hardened their stances against each other however I wanted to contribute my thoughts on the situation, maintaining my focus on 95% of deaf children’s hearing parents because they are the ultimate force here.”

~ Barry Sewell.

‘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.