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

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27 responses to this post.

  1. Posted by Lescromps on January 29, 2011 at 1:06 pm

    Very well put and obviously heartfelt,I don;t know where to start my anger over these welfare cuts and the cuts in general is overwhelming .We have to make these politicians realise we will not allow them to carry these polices through.We need to take our lead from the students and take to the streets on mass.I would urge all to join the march in London on March 26th and make our voices heard.

    Reply

  2. Posted by Chris on January 29, 2011 at 1:40 pm

    I am disabled with MS and I have blogged one idea wherever I can…

    The entire (disabled, anti-welfare cuts) movement should target the London Paralympics in 2012 : with blanket media coverage, with a logo worn by as many competitors as can be persuaded to wear it, with a leaflet drop, with banners, press conferences, and protest marches. The net result of this would be to embarrass this government in front of the world’s media. If they knew in advance it was coming, MAYBE just MAYBE they would back-track.

    Reply

  3. Mmmm well said. I’m Carer for disabled and almost housebound husband with depression. I am blind in one eye from age 30. Coped well enough when younger but due to lack of 3D vision and numerous falls in unfamiliar places am feeling the effects the older I get. I am finding it harder and harder each yr as I am the more able bodied of the two of us and
    ‘designated’ fit person. My body disagrees

    Reply

  4. […] Disability – this time it is personal . . . . « Splottdadrants's Blog […]

    Reply

  5. Superb blog as ever Paul! Can we please repost this on my blog and the broken of britain blog? BG Xx

    Reply

  6. Great insightful post. From a fellow deaf hermit.

    Reply

  7. Mwah! Thanks Xx

    Reply

  8. Well said

    Reply

  9. Feel heartened by your blog. Good to know there are articulate disabled people who have the motivation and energy to fight for those of us who don’t feel up to it most of the time. I spent 4 years looking after my husband who suffers from severe Lupus. This has many varied symptoms and he takes a bucketload of drugs daily to keep it under a semblance of control. A year ago I developed many odd symptoms which turned out to be MS. So he is now looking after me. We are in our mid fifties and have worked all our lives. Paid taxes and NI. Now when we need the safety net of the welfare state the Tories seem hell-bent on snatching it away. Every month is a terrible worry about paying our bills, managing on benefits is so hard. Now we have the added stress that a contractor will decide we really should be able to earn a living again. God knows we’d both love to be well enough to. I think it is only a matter of time before disabled people start ending it all. This life is tough enough without the Tories adding to our woes.

    Reply

    • Posted by Carol Ivory on January 30, 2011 at 10:48 am

      Sheila please march with me in March and bring everyone that you can!
      Never give up!
      Where there are problems we can find solutions

      There IS ALWAYS another way

      Carolx

      Reply

  10. Posted by Lynn on January 30, 2011 at 7:14 am

    Very well put; keep on blogging x

    Reply

  11. Posted by John Hargrave on January 30, 2011 at 8:38 am

    A great post Paul,it says most of what I would have liked to say but didn’t. As a deaf wheelchair user for many years I am only too familiar with people’s attitudes and physical barriers however, we now have to deal with a hostile press, only too keen to exploit disability issues, as a means of selling their drivel.
    I am going to protest locally but I would not be able to afford to get to London or Manchester to show my distaste of Cameron and Georgie Porgie, anyway best wishes to all who can make it.

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  12. A great post Paul, you capture the nuances that so many others just don’t see or choose to ignore….

    Lesley xx

    Reply

  13. Posted by Yv e on January 30, 2011 at 1:36 pm

    I read you blog and felt my throat constrict as I wept with joy that someone else understood the problems I have. I too am severely deaf with the help of Bona Anchored Hearing Aids can work full time with the elderly desperately trying to get the elderly home with packages of care suited for their needs. Ists heart rending there is not the care out there! My daughter wants to work as a carer in the evening but the Care Agencies wont employ her because they want her to start at 4.30pm and she cant start until 6pm or she will have to pay for childcare. I love my country but I fear our government. They want those in the front line to do more with less- less time less money less power to take control of our lives.

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  14. Carol, thanks for the kind invitation and I would really love to be there, but like many other disabled people I can’t march anywhere. I can manage a short stagger about, but my legs don’t work very well and my balance is abysmal. My world has become very small. Marches and protests are essential, but there will be thousands like me who would like to take part but cannot which is a shame. Good luck. xxx

    Reply

  15. Posted by Oya's Daughter on January 30, 2011 at 2:25 pm

    Well written, well said:

    For people who cannot protest, there is another option; sending your photo to the more able who will be marching on our behalf. Details are at http://wheresthebenefit.blogspot.com/2011/01/tuc-march-and-rally-march-26th.html

    Reply

  16. Posted by Oya's Daughter on January 30, 2011 at 3:53 pm

    By all means, spread the word far and wide as we need to be heard even if we can’t get out there ourselves and do so.

    Reply

  17. Posted by Susan Ahluwalia on January 30, 2011 at 4:31 pm

    Hi Paul, loved your blog. I’m in receipt of Incapacity Benefit, due to Fibromyalgia, which means I’m in almost constant pain and have severe fatigue, which is really hard to cope with. Oh, and I’m on anti-depressants (a high dose) for depression and OCD. I have just spent a year trying to work part-time from home and all it has done is made me feel more ill. I’ve had to give up (again) and go through the mourning stage of being unable to function at work, which is so painful.
    One of the things that drives me mad is the misuse of the word disability. People talk about people with disabilities – no, we are disabled people. I don’t have disabilities, I have impairments, and I am disabled. The term ‘people with disabilities’ suggests that the people come with a problem, I disagree with this. I am disabled by the barriers in society, and yes, to a degree by my own impairments.
    Oh, well, enough ranting for now…
    Susan A

    Reply

    • Thanks Susan. I think my next “effort” should be about the whole spectrum of ME, Constant Fatigue/ Constant Pain, Fibromyalgia & associated conditions. These are largely misunderstood by significant sections of both the medical profession and the wider public. I represented about ten individuals with one of these conditions; think I won six and lost four for DLA. One tribunal, with someone whom i have now been a friend for approaching 8 years, lasted nearly three hours. It was torturous, but we won.
      Thank you for prompting me. Best wishes. x

      Reply

    • I prefer the term ‘less able’ rather than disabled. I don’t know what others think

      Reply

  18. […] lovely Splott dad rants, Tim on Tory morals, Smile Don’t Frown prefers Pilger to Purnell (don’t we all!), […]

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