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

The blame game . . .

They say confession is good for the soul. That admitting your responsibility frees the inner guilt and allows you to move on; but what if you are not guilty but still get the blame?

History is littered with examples; The Birmingham Six, The Guildford Four, all manner of people locked up for things they didn’t do but who were punished for it just the same. Sometimes the error is admitted, and the sentence squashed, but how do you undo the years of imprisonment, the beatings in prison and the price paid by family and loved ones outside? No money can compensate for that, surely?

Whole people’s are sometimes used as scapegoats; jews in pre-war Germany (and in case we get too sanctimonious in Britain, at various times through British history too!); nowadays, it appears to be the entire Muslim faith that are considered terrorists in the making. Ignorance rules, and a Sikh gets beaten up for being a Muslim because some dick-head doesn’t know the difference.

What, though, if you are being punished for something; that everyone accepts is not your fault, but still you get punished. No one disputes that you are innocent; they even know who is guilty, but they are not only allowed to escape any punishment, they are positively rewarded instead! Outrageous, you say.

No. Let me explain.

The UK, like much of Western capitalism (US, bigger European nations – the usual suspects) is in a financial mess caused by speculative gambles and excessive greed by a few, and I mean a few – very few! As a consequence, a new government has decided that the only recourse is to cut back on everything – only it isn’t “everything” – is it. Salaries and bonuses for a few are still the same, even better for some. Instead, this government decides that the sick, the disabled, etc., will have to do with less help.

For my sins, which are undoubtedly many, I work in Local Government. I have worked in frontline support for some of the most deprived and vulnerable for something like 20 years, 12 of these with a Council in Wales. I used to manage a Welfare Rights Team, but the ruling party of this Council decided to shut it down. Then I was put in charge of a scheme to assist discharged offenders on release find accommodation; the thinking being that this could reduce re-offending. Now this is being closed down too.

Across dozens of Local Authorities, front line staff – in Adult and Children’s Services, in day care for the elderly, in support for vulnerable individuals – are being made redundant, being “actively encouraged” to volunteer for severance, or to retire early. The last two almost sound attractive, until you realise that the amounts most will get will barely last a year – and remember, most benefits are means-tested after 6 months – and then what?

In Manchester and in Birmingham; in Rhondda Cynon Taff and Neath Port Talbot; in the South East and the North West; across the UK , people who bear absolutely no responsibility for the mess that successive governments have created (I hold no brief for ANY Political party) are now being made to pay the price. They are being punished for something everybody knows they didn’t do.

Worse, the vulnerable people many of them supported, are being deprived of this service; so they are being punished as well.

We always seem to find resources for weapons or for wars; how about a “war” on inequality? or “weapons” against the causes of disability. These are otherwise called “investments in the quality of life” and they should be financed by fair taxation and proper enforcement of tax liability. Instead, I read that this government plans to make it even easier for big businesses (usually Banks!) to avoid their responsibility. Is this fair? Did you vote for this? I know I didn’t.

As ever, thanks for listening and be grateful that you can. 🙂 PK

Disability – this time it is personal . . . .

This one could be a long rant, but please stay with it because it is, I believe, important. Never, in my memory (which stretches almost back to the Atlee government that started much of what is now under attack) has “Welfare” been so vulnerable.

Those who have braved this blog before will remember that I am “disabled” – I am severely hearing impaired, effectively deaf – albeit I can still hear sounds and use guess-work and a hearing aid in my one ear with a fraction of its original capacity to muddle along. I am, however, extremely fortunate in that I am employed, full-time, in a reasonably well paid job. I am not dependent upon the state for my ability to survive. Actually, judging by the amount of taxation – I think it might even be the other way around.

I want to say two things this time: how my disability has hidden effects upon my life; and how the word “disability” is bandied around by politicians – across the political spectrum – who simply do not know what they are talking about. Simplistic generalisations are used, as if every disabled person fits a “norm“. That’s like saying all MP’s are dishonest, because a few have been caught fiddling expenses.

First up, me: as I have said, I am severely hearing impaired. This has obvious effect, in that I hear little and what I do hear is often distorted or muffled, so I have to either ask for repetition (not always easy in busy shops or bars) or “guess” and hope I don’t misinterpret (it can be embarrassing!). I have, on occasion, said “Yes” – or smiled – thinking one thing was said, when they asked something very different. Fortunately, I am large enough to get away with it most times, others may not be as fortunate.

There is though another “consequence” of my condition. One that close family and friends have started to observe. I am becoming isolated; I am becoming “anti-social“. I don’t mean in the context that I charge around drunk being abusive – I mean that I don’t socialise anymore. I opt out; I make excuses; I stay home. Worst of all – I tell lies. Not huge , damaging ones – little white ones instead. I make up another life, to excuse my non-participation in work or other social events. In short, I am becoming a semi-recluse.

Very few pubs or restaurants nowadays don’t have background music. This makes my limited ability to comprehend even less effective. Many pubs now have large screen TV’s blaring out either sports or music videos. I know when I’m beat, so I have given up. Even close friends start to look frustrated when asked to repeat something for a third or fourth time. I can’t even lip read (limited as my ability is) because many pubs also dim lights now as well! It is almost as if they are saying “No Deaf wanted“!!

At least at home I can control the environment. I can use my assorted gadgetry to understand TV programmes, I can call up subtitles on DVDs, I can converse in a room that is well-lit and free of other noise; but that is not the same as a night out, is it.

I wonder how many other disabled people have similar problems? How do visually impaired cope with poor lighting and with the plethora of street furniture? How do mobility impaired cope with steps, or with “fashionable paving” which is cobbled or such?

This brings me to my second point. The generalisation of the term “disability“. Legislation is passed as if all disability has similar impediments, identical problems or same solutions. What is “disability” ? Apart from my own insight from a selective personal experience, I have also worked as a Welfare Rights Worker for something like 20+ years. It isn’t a simple diagnosis.

There are the obvious disabilities, such as sight impairment and wheelchair users, but they have differing needs too. Some visually impaired were born with their disability, others had traumatic loss – each will have differing needs. Some have no sight, some have limited vision; some have blind spots, some have just the ability to define light from dark. Some will be confident, some will be terrified. It isn’t a simple case of s/he has (a) so can do (b) . . .

Then there are those with learning disabilities – again, to a degree, visible. Downs syndrome is a classic case, but not all people with this condition have an identical set of needs. We are all different; unsurprisingly, so are they!

Then there are the invisible disabilities. In my many years of supporting and representing people with various difficulties, nothing  struck me more than those poor souls struck with Crohn’s Disease or Ulcerated Colitis. In short, they are often housebound out of fear of an explosive problem “down below“. I can recall a man – a former Master Butcher in a high street chain – who simply reduced to tears when describing the embarrassment of incontinence caused by his condition. The Benefits Agency (as it was then) argued that incontinence pants solved the problem, but would you be happy walking around in a “nappy” full of . . . well, you don’t need me to be that graphic. What does he do about the looks of horror from the smell? Who hasn’t sat on a bus and joked about a baby needing changing? Imagine if there was no baby, but a 50-year-old adult instead?

There a multitude of differing disabilities; and an equal number of abilities to cope. I haven’t even touched on the disability with perhaps the biggest stigma of all; mental health. There are many insightful blogs out there with greater knowledge than I have, I urge you to seek them out and read them. I have been fortunate to have many wonderful clients, some who I am proud now to call friends, who have mental health problems.

I represented one particularly lovely lady FOUR times, over a period of about 5 years, at Social Security Appeal Tribunals – twice for DLA, twice for Incapacity Benefit. We won all four, and overturned decisions to stop benefit, but at a price of stress, sleepless nights and – in some cases – self harm by the claimant. Always the combined evidence of Consultant psychiatrists, of GP’s, of Social Workers and of family and friends, who have known the individual for years, was rejected in favour of the ATOS (or whichever profiteer had the contract) diagnosis, based on a 20 minute interview. Sorry, the only word I can think of is “Outrageous“.

The current thinking is that most people are better off in work. As someone who has “worked” continuously since 1969, there are mornings when I wonder – but, if I am honest, I accept that “paid work” does give a focus, a dignity and – most importantly – a degree of additional financial support. Contrary to the mythology, few on benefits are well off.

However, where is the employer who will tolerate the BiPolar Affected person who is full of energy and ideas one week, then incapable of getting out of bed the next? Most disabilities place some restrictions upon the sufferer. It is a competitive employment market – we have the Equality Act (incorporating much of the DDA) – but we still have prejudice too.

I believe I am fair and impartial in political terms. I think NONE of the parties have a clue; or maybe they do but simply don’t care? As I said in an earlier blog, by scapegoating the tiny minority who may defraud the system you often have a deterrent effect upon many who are both eligible and in desperate need. No one wants to be labelled a “benefit scrounger“, though some TV producers would be lost for programme ideas if they didn’t exist. Fear of being thought as a cheat is now costing some people their lives.

This is an important issue. Please support those campaigning for social justice for those least able to cope in these times. A mark of a truly Big Society is one with the heart to protect the weakest.

Thank you, as ever, for listening 🙂

PaulK

Welfare Cheats . . part two.

In my earlier “rant”, I attempted to put my perspective – as a previous practitioner – on the recent history of welfare benefit changes, and the misconceptions that are associated with the process. I also alluded to overly simplistic concepts of “disability”.

First, let me ask “What is a Benefit, or Welfare, Cheat?” – the simple answer, I suppose, is someone who claims money from the system that they are not entitled to receive. Is it ever as simple as that? – answer; “Yes”. In an extremely small number of cases (when compared to the total amount paid) some criminals (for this is what they are) make knowingly, fraudulent claims – sometimes using false names, false addresses, stolen NINo’s, and invented ailments and/or illnesses – sometimes in their own name but with dishonest intent.

Allow me to be very clear about these people. It is wrong; it is a criminal act; it should be punished. This is not a blog about punishment and the Justice system, so that is where I will leave it.

However, the terminology is loosely used to cover much more than those specific instances. It is sprayed around, with the precision of an agricultural muck spreader, by ill-informed, opportunistic people – usually politicians, and across the partisan divide – to justify the latest “cure-all” for what is suggested as a system out of control. I take issue with much of that.

I am constantly being told that this country – the UK – is the fourth or fifth richest in the world. Surely a measure of a nations’ success is how it treats and supports its own population? Unfortunately, many politicians seem to think that the term “population” means those who actively participate in elections and therefore have a vote I am interested in securing. Many of the poorest, the physically or mentally ill and/or disabled do not vote; they do not feel involved. Result: they are ignored.

I make no claim to be an economist. One of the few things I remember from my Economics Teacher was him saying that, “If you laid all the worlds economists end to end they probably would fail to reach a conclusion” – in short, it is a lot of guess-work and not a precise science. Bit like Politics then. . .  However, I am informed that the current deficit was largely brought about by urgent bail outs of the Financial Institutions, who had speculated and failed. Again, in short, “we” are paying the man who popped into the bookies, backed the wrong horse, lost the rent money and then claimed it was due to forces beyond his control.

As I advised in a previous rant; I was, for a number of years, a Welfare Rights specialist – in Local Government, in the “not-for-profit sector” and with charitable bodies. I openly admit that the system was imperfect, was complicated and suffered from a small degree of abuse. I also assert that ANY system will always be subject to abuse. Crime doesn’t go away just because Parliament legislates against it – even parliament itself has seen “criminals” within their own ranks abuse their own systems of benefits . . .

I had the good fortune to represent and assist a substantial number of decent, law-abiding, but also seriously ill, disabled and vulnerable people in my 20+ years in that field. I have no doubts, whatsoever, that I probably also represented a tiny number of cheats too – never knowingly, but it is a statistical inevitability. How, in all fairness, can I – or anyone else – guarantee that the degree of pain or discomfort suffered is less than claimed? Assessing a benefit claim is, to a degree, an imprecise science – a bit like politics and economics.

Theoretically, the receipt of any money not declared whilst in receipt of a means-tested benefit is a form of fraud. Yes, there are certain disregards, there was therapeutic earnings allowances, etc., etc. (I want to minimise the technical stuff, because that is part of the problem of the debate) but, in essence, if you did something that incurred a reward or received cash, you are supposed to declare it.  Allow me to tell you a story of a former client, now deceased sadly, so I feel no breach of his confidentiality – but he will remain nameless:

This individual lived in the Glamorgan Valleys. He had worked in the South Wales Mines for a few years prior to the mass closures, never in any skillful capacity, usually in Labouring jobs. By his own admission he was a “bit of a lump”, good at manual effort but none to bright.

His family background was not exceptional, but poverty had featured continuously – he was the eldest of seven, and his biological father had died from a respiratory illness when he was a teenager. His mother had remarried, and the step-father saw him especially, as the eldest and as a large individual, as a threat to the new relationship, so he was kicked out of the family home at age 16.

He was no great shakes at school, so the local pit seemed an obvious place. Whilst he had a job, he was OK. He didn’t do anything earth-shattering, but he paid his taxes and lived an uneventful life. Work, a dingy bed sit and the Miners welfare club, with the occasional trip down the valley for the football.

With unemployment, which effected ‘000’s granted, came the sad slide into boredom, petty crime and eventually prosecution and conviction. He didn’t go to prison, even his “criminality” was unimpressive. he was on probation and that is where I first met him.

My initial assessment was of a person of immense sadness. Few friends, fewer “skills”; no family life (he saw little of his mother and siblings) and minimal prospects. In co-operation with the local Dept. of Employment (pre-JobCentre+ days!) we got him on numerous courses, but whilst he attended religiously and conscientiously, we all knew he was not a prime candidate for meaningful employment. At that time, there were graduates unemployed, let alone someone who struggled to read and write and with a criminal record now too.

His sole income was Unemployment Benefit, which was then – and is now in its latest guise – supposed to cover fuel and utility bills, household domestic costs, travel and transport, food, leisure, etc. He also received (or his landlord did) Housing benefit, so he did not have to find the rent for his one room dwelling with shared bathroom. His kitchen was a primer stove; he had no fridge.

His one treat in the week was a trip to the “chippy” on a Friday evening. Amazingly, he was befriended by an Asian family who ran it, and – as they were small in frame and he was very large – he used to willingly volunteer to shift large sacks of potatoes for them when delivered to the shop. Over months, this developed into odd jobs (in truth, largely invented by the family to help him) and eventually, he started peeling spuds occasionally – maybe once or twice a week for an hour or so.

His “reward” for his efforts – usually a very large fish supper, and a couple of quid for a pint. As I said, I personally think this was more an act of kindness by the family than an exploitation of an unemployed person. This went on for a couple of years, until – sadly – the father of the Asian family died from natural causes, and the business ceased.

My “client” never failed to make himself available for work. He attended any and every course suggested, but he was never even offered an interview, let alone a job, until he too – sadly – died at an alarmingly early age in his early 40’s, from a sudden illness.

In the strictest sense of the words “benefit cheat”, he was one. He never declared this small additional income – sometimes £5- a week, at a time when Unemployment Benefit would have been  @ £40. It was as  much a social benefit as a financial one, but – yes – he was a Benefit Cheat.

Think of him and then think of the Murdoch’s, and the Ashcroft’s, and the plethora of big business who avoid their tax liability and ask yourself which is worse. I know who I think is.

I’ll rant some more soon, and thank you to those few encouraging comments. Appreciated. 🙂