Being deaf – still!!

“Being Deaf” …… 31.03.2015

Background: The author has been profoundly deaf in one ear since birth, and grew up in a gloriously mono world – despite salesmen attempting to sell him both stereo and quadrophonic sound systems. Five years ago, he went to sleep with a “bit of a headache” one night and woke up with much of his hearing in the other ear gone. They told him it was a virus. He now wears a hearing aid, but not as often as he should, apparently. Recently, the little hearing he has left has started to deteriorate and the world is getting quieter and more distorted. Cue witty remarks …..
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Hello. To those of you, who have previously engaged with this blog, welcome back; both of you . . . No need to apologise; as a deaf person, I am well used to being ignored. Apparently, repeating yourself when requested is tiresome, especially if it for the second or third time of asking. What’s that? The background music doesn’t help? Well, no one else is complaining, so – No – we won’t turn it down.
Being disabled is a politically “hot potato” at present. It seems, at times, to be one of the few things that the main parties agree upon. They all seem to hate us, and blame us for the need to cut government expenditure. Whether it is that relative of a bowel complaint, Ian Duncan Smith (IDS/ IBS – geddit?) or Rachel Reeves, they all want to distance themselves from anyone requiring a modicum of support. The stereotype image is of the feckless, the scrounger, the “not really as bad as you make out, are you?” … How I wish that was true.
Obviously, it is the wholly unreasonable levels of benefits, and NOT the astronomical bonuses that bankers pay themselves, whilst assisting huge corporations and the mega-rich to avoid/evade (whichever!) taxation, that is responsible for all the ills the beset us as a nation. Either that, or it’s Big Gordy’s fault – but then he’s got one eye and could be disabled, so that explains it, doesn’t it.
So; what is it like being “disabled”? How do I cope with being at home all day, drawing huge sums from the pockets of hard working people & squandering on a lavish lifestyle? Sorry, but I can’t tell you. I have been in full time employment since 1970; still am. Many disabled people are the same. It is a frequently made mistake to assume otherwise.
Not that I, a tax payer like you (PAYE – don’t have a choice!) object to those who are unable to work. Someone more profound and literate than me once said that it is a measure of a society on how it treats its most disadvantaged. I know enough about the welfare state to know that the level of benefits does not allow the vast majority to do anything more than exist.
The media – whether it is TV or the tabloids – will always find the minority who are pulling a scam, and then make a celebrity out of them. There isn’t a system invented that someone won’t find a way of exploiting, so the popular belief appears to be to stigmatise the genuine into wanting to disassociate themselves from the whole process. This means that THE most vulnerable – the elderly, those with mental health problems and depressive illnesses – will often cease seeking help, quietly starve and almost certainly deteriorate. Still, apart from the funeral, it does reduce dependency ….
Politics nowadays is about instant wins and short term gains, so rather than look for long term solutions, the tendency – across the party divide – is for catchy sound bites and “feel good” moments for those nice middle class voters you want on-board.
The biggest mistake they all make is to refer to us as The Disabled, as if we are a group with identical needs and aspirations. That’s almost as likely as saying all MP’s are dishonest because a few fiddled their expenses …..
In previous blogs, I have attempted to add some light to the debate about differing disabilities. There is no league table; it can depend on a whole host of factors as to how an individual copes. Two people with an almost identical condition can deal with it completely differently. Similarly, a diagnosis is not really useful in explaining things. I’m deaf – what does that mean? Can I hear nothing, something, a little or a lot? Does it affect anything else in my daily life, or is it simply a communication thing? This is what people don’t ask – they assume instead.
Deafness is isolating and frustrating; it is having to concentrate hard on simple conversations, and having to accept that sometimes you have to give up and hope you haven’t missed something important.
Deafness means that going to the cinema is restricted to those rare occasions they show a subtitled film. Where I live, there are three (soon to be four) major chain cinemas – each with a dozen screens and multiple shows per day – and a two screen independent.
Despite that, if there is more than two subtitled showings (leaving aside the independent showing foreign films frequently) it is an occasion. Unfortunately, that subtitled show is usually pushed to a slot that they find hard to fill anyway – Sunday afternoon or Tuesday early … and the choice of film? What choice? Sadly, it is often a children’s film.
Deafness means that much of the entertainment platforms on TV are not accessible still. Virgin Media still doesn’t provide subtitles for its on demand or films. Do I get a discount? No. I don’t.
Deafness means eating out or going to a pub is challenging. Few don’t have background music (like my reason for going out with friends is to listen to someone else’s taste in muzak?).
Deafness is THAT look on the servers face, the one where the doubt your mental competence to let out unsupervised. Your lips may say “It’s fine”, but your eyes and facial expression say “Oh FFS, are you deaf?” – YES!!!
PK

Update 2014: Still deaf . . . . .

Back in 2011, when I first started my (thankfully?!) brief blogging venture, I mostly spoke about my experiences as someone with a hearing impairment. My belief then, further reinforced by events since, was that “society” has a relatively poor understanding of “disability”. Politicians, and the agencies of the government (DWP, etc.) have an even worse one!

Whenever Westminster wants a soft target to garner media attention, they usually focus on “benefits” in general, and – often – the sick &/or the disabled in particular. The national press, and not just the usual suspects of the Sun, the Mail and the Express, lap it up, and go mad trying to find someone who may be abusing the system. [DWP/ government statistics unfailingly show that the % of fraud is miniscule. If you want big numbers, look at tax avoidance …]

First up; ANY system – no matter how sophisticated – will always have a small number of people who find a way of cheating it. Just look at Parliament and MPs expenses ….
Concentrate of catching the cheats, not on a high profile campaigns to make the genuine feel ashamed of claiming. Usually these result in the elderly, or the mentally ill cutting themselves adrift and becoming isolated.

Secondly, can someone please explain to the policy makers that “disability” means many different things to many different people. The disabled are NOT a homogeneous group with identical, or even similar, needs and problems There are different levels of impairment, and different people – for reasons of confidence, for reasons of support (or lack of!) or simple attitude – cope in different ways.

Two people with very similar degrees of the same disability will, quite possibly, cope very differently. The individual needs assessing, NOT the disability.

Similarly, can someone please explain that not all disabilities are visually obvious. The sight impaired sometimes have a nice cuddly Labrador, and the mobility impaired sometimes have wheelchairs – both clear indications of a problem (and, sadly, often an invitation for some to patronise!); BUT, many disabilities are invisible.

You’d have to look hard to see my hearing aid, especially when I’m not wearing it :-). Then there are serious, life-changing conditions like Crohns Disease, heart disease, lung disorders, and a whole host of others. There is also the “Cinderella” of all disabilities – the issue of mental health, still stigmatised in the twenty first century.

I spent nearly 25 years in welfare rights – with the CABx, with the Probation Service and with a local authority. I know from personal experience of thousands of clients, that simply paying a weekly stipend to bugger off and stay at home is no solution; but neither is a unrealistic workfare programme with non-jobs and intimidating sanctions.

This is still one of the richest nations on the planet. We can – apparently – afford two aircraft carriers at countless billions, even though we don’t have any aircraft to fly from them. We can afford £224 million penalties on cancellation of a failed contract for the Borders Agency. We can even afford to consider replacing a nuclear weapons system in a world where the real threat is often in our own communities ….

Surely, we can afford to spend a bit of time on finding long term, realistic ways of supporting our own people? The quality of a society is measured on how it treats its most disadvantaged, not on how draconian it is to them.

P

Am I TOO sensitive? Am I f. . . !

Recent events have made me realise, even more, how intolerant a society we are at times.

It has also raised my personal estimation of the long-term disabled to a stratospheric level.

Allow me to elaborate.

Regular readers (both of you!) will – by now – know that I am severely hearing impaired. Whilst having no hearing in my left ear since birth (mine was always a Mono world), I managed to reach the Grand Old Age of 52 before a virus caused the right one to fail. I use a hearing aid, to amplify sound to a level where I can make some sense of it, but – in truth – it isn’t volume alone that is the problem, it is clarity too. No hearing aid can improve that, sadly.

The hearing aid can help, but it also has a negative side. First, it causes “sweatiness” and an increased risk of additional infections. Imagine walking around all day, every day, with your finger in your ear. Not comfortable, is it. Then there is the problem of traffic. I live and work in a large, bustling City – Cardiff. Love it. Wouldn’t want to live anywhere else now. Almost a “local” – after 26 years.

The difficulty is that traffic makes a lot of unpleasant noise; engines revving, squealing brakes, horns and hooters, irate motorists, etc. – anyway, it is not what I want to hear, so I frequently remove my hearing aid when in town. Popping it in to talk in shops or in cafes takes seconds, and I keep it in its neat little case in my top pocket. I have to use my eyes more, because the same traffic I don’t want to hear can also run me over!, but – to date – I have coped.

Yesterday, whilst awaiting a bus to County Hall in Cardiff, I was verbally abused – by a tourist, I think (he had a Tourist map of Cardiff in his hands) – and this reminded me of the other, too many sadly, occasions that I have suffered similar. The incident, in itself was not major; but it is part of a culmination of a society that is increasingly intolerant and aggressive to the disabled.

As I said, I was awaiting a bus; sitting in a bus stop outside the Hilton Hotel, watching the Irish Rugby Squad board their coach. Said “Tourist” (no idea if he was Irish!) approached, and – I presume – asked directions (he had that look and was pointing at his map).

I responded thus (as I had removed my hearing aid, as mentioned earlier); “Sorry, I can’t hear you but . . ” – I didn’t get any further than that, because he – literally – went ape-shit on me. He started ranting, no idea about what because I was still fumbling for my hearing aid, and then he stormed off. From his body language, his facial expressions and from his colouration (going puce), he clearly thought I was being unhelpful. If he had waited a second longer, my sentence was going to end, “. . .  if you hang on a second, I’ll put my hearing aid in and will be glad to help you bwtti“.

OK. No one was physically hurt. No blood was spilled. The little old lady next to me was a tad upset at it, but she was ok. If I wasn’t getting on and not as quick as I used to be, I should have decked him one, but that would definitely terrified the old dear, so probably best I didn’t.

I should also add a few personal points. I am a smidgen under 6 foot tall; about 17+ stone, and after 40+ years in the world of work, including spells working with both sex and violent offenders, with people with addictions and with sufferers of Mental Health problems, not easily upset. I am also a very active Trade Unionist, so I am well used to abuse!

I don’t cry easily. With the exception of tears of joy when my beautiful, much-loved daughters were born, the last time I can remember really crying was 18th September, 1970 – when I read the front page of the London Evening News that Jimi Hendrix had died (OK, I was 16 at the time!!). I didn’t cry yesterday either . . .  but i felt like it nearly.

Daily, I see the expression on some people’s faces when I ask (tiresome, I know) to repeat something – sometimes even twice.

All to often, I am expected to be amused as some idiot, on being told that I am deaf, makes some tasteless joke about it.

Frequently, I am confronted with meetings (even after being told of my condition) that don’t have an induction loop, or don’t know how to operate it, or find that it hasn’t been serviced in years and that it doesn’t work. “Oh, do you mind?”, they say.  What? Do I mind that I’ll not now hear sod all, and that you probably don’t give a toss? Have a wild guess!

A couple of years ago I attended a meeting in City Hall, along with many others, when Sir Richard Tilt was addressing an audience of CAB workers, Advice agencies, Local Authority staff and specialists who worked with Social Fund appeals. Tilt was the Commissioner of the Independent Social Fund Review at the time.

His staff had gone to some lengths to ensure that the meeting location was equipped with the correct loop and that it worked. The “top table” all had microphones and their was a roving mic’ for speakers from the floor. Brilliant. Only Sir Richard decided to become a “man of the people”, rose from his seat and stood in front of the table to address us. Couldn’t hear a bloody thing.

Not being the shy, retiring type, I interjected that those of us with a hearing impairment required him to use the microphone. He waved me aside and said, I’ll come to that later !! Sir Richard? or just plain “dick” ?

On other occasions, I have met with unfriendly technology or uncaring staff. I have previously blogged about the lack of working loops in cinemas, in theatres or, if they do work, the fact that a deposit is required for use. These are all relatively minor when compared with what some disabled people face each day, but if these are wearing me down, think what it is doing to them.

I have huge respect now, for those born or disabled young; for those with much more severe conditions than mine. I would like to hope that readers of this might just take a bit of that respect away with them and use it next time you meet someone who needs a bit of patience and understanding. Please.

As ever, thank you for listening and be grateful that you can 🙂

This “Rant” is dedicated to the wonderful Kaliya Franklin (@BendyGirl on twitter) who continues to inspire me daily with her tweets, and to Natasha Hirst (@TashHirst) who inspired me to blog this contribution. She is a hugely talented photographer, political activist and all round good egg, who just happens to be deaf too. xx – to both of you – xx