‘Twas Truly A Pleasure’ By Lesley Kiddell-Spencer.

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Oh dear, sometimes in life we realise the page has turned to a new chapter and another phase in our life has started. This has happened with “The Treehouse” group, it is now time to take down the curtains, remove the furniture and dismantle the structure of our treehouse to move to pastures new.

Sara gave a huge amount of her time setting up this group, she did us proud and we should remember her for that. The story below will give you an idea of the kind of person she is, she wrote this herself some 3 years ago and it sums her up perfectly.

“I have a sweet recollection to share, of a particular time long ago when a father wished to purchase for his daughter, a bag she so coveted. Mine. Was this you or perhaps, do you know them? If so, please do let us know.

I had jumped onto the train, all ready to meet friends with my roller-blades tucked away in my brand new sporting bag, that I had purchased especially.

As the tube rattled along and made its course, everyone was either reading the newspaper or dozing off encouraged by the monotonous vibrations of the train. I for one usually contemplated to pass the time.

Someone suddenly but gently tapped me on my knee, I was mildly astonished that someone wanted my attention. He explained that his daughter admired my bag and wanted to enquire as to where he could buy her, the exact same bag. I looked besides him to find his daughter being ever so shy. I remember being as shy as she once. Bless.

I seized the opportunity to draw a detailed map for them, alighting from a specific tube station, directions and the name of the shop. Even, where the bag was in the shop… His daughter seemed silently appreciative whilst her father seemed a little daunted, perhaps at the thought of making his way through crowds of people within the busy streets of London, with his daughter in tow.

My instincts told me he had at least, a little bit of experience with deaf people, knowing how to speak and listen in return. Therefore, I asked him, if he knew anyone that happened to be deaf. Much to his surprise at my evaluation, he then confessed his wife was deaf who remained in the United States whilst he was holidaying here, with their daughter.

Not forgetting the desired bag, their stop was the next one coming up. Mine was not for several stops after. He had shown me patience and kindness as a stranger, “What shall I do? I cannot leave them stranded at the mercy of body pushers” I thought… I decided to listen to my instincts and got off the train with them instead. He seemed to be somewhat surprised yet relieved that I was able to join and guide them through the bustling streets of London, which was heaving with tourists. He was no longer nervous and seemed more at ease; this meant his daughter was relatively more at peace.

Upon arriving at the shop, I showed his daughter through to where there was an identical bag to mine, waiting to be owned, by her. Different shades of gorgeous purple – who could resist? At last, two people were happy, having been looked after, satisfactorily. I explained that I now had to go because I was meeting friends, wisely omitting that I was late. After all, it was my choice.

I bode them well, to take care and to enjoy the rest of their holiday before turning around and leaving them to continue their retail therapy. As soon as they could no longer see me, I ran like the wind to make up for lost time.

My friends at the time was wondering where I was but they could not get annoyed with me once I explained, what I had been up to. Bless their cottons!

Who knows if the ‘six degrees of separation’ reasoning is viable yet my faith and trust in fate will remain. If this somehow reaches you and this has made you smile in reminiscence, being the daughter and/or the father – ‘Twas truly, my pleasure.”

We could never get annoyed with you Sara, and this time ‘Twas truly OUR pleasure”

Lets say “bye for now” but not “farewell

Lesley.

‘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….

 

‘So you have hearing loss too? Soundz Off can help’ by Tania Le Marinel

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 – http://www.soundzoff.org

‘Common Sense’ by Andrew Arthur

This blog entry, ‘Dear Deaf People With The Wrong Facts.’ is an interesting read, because it does give the other side of the picture. When I was at university they were big time on taking the “balanced view”. This often means looking at the other person’s point of view. In my opinion the Deaf part of our community are just not doing this. They are only interested in their point of view and nobody else’s.

This is particularly obvious in the replies at the bottom where we see people desperately trying to make the case for ASL and quoting what they see as facts in order to disprove the “Oral” argument. But you can see clearly that they are not presenting facts at all they are just coming up with anecdotal evidence, that is to say stories that “prove” the point. They tell us that as life long sign users they lead a full and productive life and are happy as they are. This is in fact the worst kind of evidence.

The reason for this is that quoting just one case or recounting a story of just one success does not prove that the whole argument is wrong. It’s very important to realise that. This is what we are taught to rely on at university and people who have not had that type of education, one might even say indoctrination tend to find it hard to accept reasoned discussion.

The *facts* are that overall Deaf people tend to have second class lives. They overall lack job security, career advancement, financial security. Yes, fine there are exceptions. I’m sure there are Deaf millionaires who have forged out a great career and all the trimmings. But far more common are people who live in low grade housing, rely on benefits, only circulate in the Deaf world and are generally deprived.

We know this because numerous surveys of the Deaf world over a period of years show that people experience all these things. That is why the *few* such as Nyle Di Marco are so celebrated. The underlying message is “You too can be like this” and actually the _evidence_ is “No you can’t”. So really these people who bang on about how great it is to be Deaf are only talking about their *own* situation. It doesn’t necessarily mean that we can all be like that.

But if you read those replies, a lot of them become personal. They are like “how dare you offend me with this heresy”. It’s almost like someone has insulted their religion and we all know where that leads. It just isn’t helpful.
But also as I have said before, America is not Britain. In the US there are a huge number of Deaf people and many are able to live in signing communities and work as Deaf people. In this country the opportunities to do that are limited.

So there is a danger in emulating the American experience too closely. In this country if you want to live a Deaf life you have to be prepared to travel long distances to organised events but in the US there are enough people in one area to make it possible to have local events.
Americans do travel much more than we do but the whole country is geared up to it. One of my friends travelled up to London yesterday to see her daughter’s new baby. A mere (by US standards) 250 mile trip. In the US they chuck a few necessities in the car and do the journey in an afternoon. However I had a text from my friend to say how exhausted she was from the journey, which she did by train!

Having said that, people here can and do live in deaf communities, I know for a fact that Bristol has a thriving community whereas Cornwall does not. In fact the deaf club in Bristol is negotiating to buy their own building. In Cornwall there is only one club, it is miles away from the rest of the county (Camborne) and I am told that actually the hearing helpers outnumber the deaf members!

So we’ve got to be sensible about this. There is this attitude of “Our gang, your gang” … ours is better than yours. But come on! We are talking about people’s lives, not rival football teams! I’d like to think that the Tree House can help people to look beyond the partisan attitudes just as the anonymous writer has done in that blog. I’d like us to be able to say “Of course it’s OK to be a signer. Of course it’s OK to be a lipreader, Of course it’s OK to use whatever hearing you have”.

To quote a certain Dodgy Dave… “We’re all in this together” …. but not quite in the way he meant, I think!

‘Ending My Hearing Loss Isolation’ by Stu Nunnery

Here is yet another extract from another very interesting blog by Stu Nunnery, via the awesome ‘HearingLikeMe.com‘ site, sharing here for those who have had or are experiencing hearing loss…

“There wasn’t a good reason for me to hide and remain closed off socially or depend solely on my good hearing friends for their understanding and a social life anymore. My hearing loss isolation was a decision on my part, born of many things, but a decision nonetheless. Loneliness and isolation are not new issues for those of us with hearing loss and my story is hardly unique. Still many of us wonder how to connect our lives, work and souls to others with hearing loss given our common challenges.

As I discovered, there are ever more opportunities to engage with others with hearing loss and in activities customized for us here, there and everywhere. The chances are now greater to meet new people with similar and diverse backgrounds, skills and interests to enjoy a conversation, go out to dinner, travel, see a show, or take a walk without feeling the need to explain ourselves. Above all, we want to laugh, love and enjoy life like everyone else. Email, texting and Twitter have been a godsend for us for sure, but nothing beats a real face, a voice and a soulful connection.”

We would recommend that you read Stu’s full blog, via this link:

http://www.hearinglikeme.com/ending-my-hearing-loss-isolation/

Enjoy, once more.

We certainly did 🙂

‘Make The Most Of What You’ve Got’ by Martin Griffiths

At least three people have asked me what gig was I going to see and misheard my reply. I told them I was going to see ‘Wolf Alice’ and one said “Oh, wonder if he will play his didgeridoo?” and another said “Isn’t he in prison for being a dirty old man?”. “No, no, no, I am going to see Wolf Alice NOT Rolf Harris!” I think the number of hard of hearing people will be increasing soon.

I also constantly get asked how can I enjoy gigs as a profound deaf person with severe sight loss. Easy answer is I accept that I cannot hear or see the same as others do but if I prepare properly I will get some enjoyment from

a. Being out of the house

b. Being in a gig atmosphere watching crazy gig neighbours singing and dancing

c. Enjoying what I can hear or see and not stressing about my sensory losses.

Photo by Martin Griffiths

Photo by Martin Griffiths

My preparation for ‘From the Jam‘ at Barry Memo Arts on 26th  March 2016 started with contacting the band via their Facebook page and asking for a setlist. They duly obliged with a warning that on the night there may be late changes. They did appear to drop two songs but lesser known ones. This threw me a little but knowing the songs expected next helps me tune into the song via memory and what my hearing aids pick up.

Tip – if contacting bands via social media it is usually better to contact direct via private message as many bands are not keen to share setlists unless there is good reason.

Often I will search sites like Setlist FM ‘www.setlist.fm‘ for setlists from the latest tour of the band I am going to see. These lists are fan generated and accuracy can vary although I generally find them to be reliable.

Next step is to listen to the tracks via direct audio input to relearn the songs and also checking lyric sites and apps. This can help although often bands rearrange popular songs or do medleys which can be challenging.

Using apps like Soundhound and Musixmatch can help with identifying songs and discovering lyrics often in real-time. The apps may be more successful in linking with pre-recorded music. Live music tends to come with audience generated noises that confuse the apps.

Preparation done so now time to get the ticket and head to the gig. I hope for the best but still look to using my experience to increase the odds of a successful gig. I discovered that in small venues you often can put your hands on speaker stacks and pick up additional information through vibrations. Dont stand in front of the stacks as you may lose the little hearing you have left. I often stand to the side with arm outstretched to feel the music and I hear better.

It is also wise to play with hearing aid settings too. I often find having one hearing aid on the omnidirectional microphone setting and the other on unidirectional works best for me. At one gig someone threw liquid and I took the wet aid out and discovered having one aid out helped me pick up bass notes more easily. Different gigs and venues may require different combinations of hearing aid settings.

I never hear the banter between songs and often fail to hear a familiar song.Time to stay positive and pluck up courage to ask a neighbour what that song is!

Often I have to move about to find best sound spot and it helps to be close and get visual clues. I guessed we were starting Pretty Green just by watching the rhythm of the guitars and drums. I was in the front row so had some visual stimulus.

If I did not know the songs I may still enjoy the broad sound and guess what they might be singing. I know Eton Rifles very well but if I did not I might look at people singing along and think its Eating Trifles!

I tend not to sing along as for some reason doing this reduces what I can hear. I need to concentrate.

It’s not easy but I have to be positive. I sometimes have a beer and take part in some crazy ‘dancing’ but if I do I will lose some of the already reduced quality.

Gotta keep getting whatever enjoyment I can when I can. My sight and hearing reduce each year so there is no time to waste.

Positivity rules.

🙂

By Martin Griffiths.

Martin Griffiths

Mr Martin Griffiths