Sunday, January 30, 2011

Disability - This Time It's Personal

 A guest post by Paul K. Originally posted here;

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 :-)



michael said...

Very good article couldn't put across what you have said better!

Bill Kruse said...

Good of course but pointless as the government are very likely well aware of all you say and more. They are only interested in disguising their economic incompetence and inability to control the banks, which have the undoubted whiphand as they control the money supply without which... well, everything we know ends. They're picking on the one strata of society which can't fight back just to give themselves the appearance of authority. The government are far more desparate than are the disabled.

Oya's Daughter said...

Well then, why not keel over and die then *eyeroll*

Seriously, if it's wrong, you KNOW it's wrong, and you do NOTHING then you may as well just stick your head in the oven and turn it on. The point is we have to get up and fight it. Rolling over and sighing "It won't do any good" isn't going to help at all.

Get involved! Find away and fight for what is wrong. Everyone in England is talking about Egypt, but won't do a thing here, and I find that rather sad.

Pat Onions said...

I totally agree. I am registered blind but die to my age (50+ a little bit)am constantly told by the public....'You don't look blind' and 'It must be nice to take early retirement.' Complete ignorance of my own situation. Ny sight loss is classed as 'severe' and as such am not fit to do any work that requires sight!! I am, however, allowed to be a full time carer to my husband with no support, equipment or help for myself. My little bit of DLA care and mobility components do let me have some independence. If the authorities had their way we would all sit at home waiting for meals on wheels and Talking Books. Which we would pay for, of cours!

BettysBlues said...

if only others had your compassion. as someone who is also going deaf on top of having bipolar disorder (makes the paranoia worse!) arthritis and a proneness to fatigue, I am very worried that Atos will not recognise my conditions as they cannot see them, especially as I have worked so very very hard to remain mobile. (victim of a drunk driver who dragged me dozens of yards off a crossing...)

G Best said...

Thank you for this, I am one of those people who has been going through the process of trying to claim DLA for over a year, dispite specialist diagnosis and an operation etc because I dont fall into the brackets and tick the boxes supplied I do not qualify for help. I am only 25 years old and until last year was a confident outgoing person. Now due to severe back problems reducing my ability to walk I have become semi recluse, I can no longer take part in most of the things I used to enjoy. Im embarrassed at the way I walk and how much weight Ive put on. After surgery the ony thing the doctor can offer is "stronger painkillers" which will now be a normal part of my life for as long as I live but do not even take the edge off the problem, constantly being in pain and wanting to stay indoors instead of going out, I have lost all of my confidence, am suffering with depression amongst other things. But what help can I have??? None. I do not qualify.

I think you put it so well in your article, I have now started to feel guilty for continuing to pursue help. Ive only had a disability for over a year now and am already frustrated and upset, my heart goes out to those who have suffered much longer. The scars run very deep and cant always be put down in a tick box.