#esaSOS: just when you think it's safe to be disabled again - - -.

Here we go again! Just as we thought things were beginning to settle down those of us who make up the disabled community in this country are having to prepare ourselves for another onslaught on our dignity, our credibility and our abilities. For purely ideological reasons the Coalition Government, and yes, Liberal Democrats, you are as culpable as the Conservatives for what is being done to claw back a few pounds a week from those of us who are unable to serve the capitalist machine for medical reasons, while you cut the tax rates of those with the most money in this country (including yourselves) and you do nothing about those who find a way around the latest tax regulations before the ink recording them has dried on the page.

The Atos inspectors, -(yes that is what they are, Assessors are given licence to apply reality to whatever it is they are assessing while inspectors simply ensure that a product or commodity - in this case those who the medical professions have deemed "disabled" - fit a predefined set of parameters)- have been given instructions to play what amounts to a guessing game with the quality of our lives.

They are now under instruction from the government to imagine whether or not folk like me can be fitted back into "the workplace" if we used some aid or adaptation we might never have heard of, or seen, and regardless of whether or not we, as INDIVIDUALS, are able to make use of that aid or adaptation. This is equivalent to putting a 14-year-old in a Grand Prix car on a public road because they might be a good driver at some unidentified point in the future. Many of us will be subjected to an equivalent level of danger following our INSPECTION. If it were not so serious it would be laughable.

Three years ago I asked my GP if there was somewhere I could go to learn how to “drive” a wheelchair as I thought the time to submit to the pain was coming near. He didn’t agree, he pointed out that permanent use of a wheelchair has implications for skeleton and muscles. We reviewed my pain management instead. So what happens if the Atos inspector decides I can work from a wheelchair?

And there is more - - -

Those of you who are familiar with my blog will know that I live with both a recognised physical disability and a diagnosed mental illness. I am not sure what the implications will be for me of the latest Tory/Lib Dem instruction to the inspectors that they MUST NOT take account of both the physical and the cognitive disabilities of the human being standing before them, but I am assuming it will mean, in my case, that I am inspected twice. If that is the case it will be incredibly annoying but as those responsible for both my physical and my psychiatric well-being continually reassure me that either one of these conditions, and the strong medication I take in order to manage each one of them, should mean I am never considered fit for employment again. I have to continuously remind myself of some of the true horror stories about the fate of disabled persons who have been inspected by Atos in order that I do not become complacent. For I, and only I, am very aware of what the effect will be on my mental health if I allow myself to assume that I will continue to be deemed unfit for employment and the opposite occurs.

One of the side-effects of my "Degenerative Disc Disease" is arthritis. Earlier this year I was asked by the charity "Arthritis Care" to provide a filmed account of the impact of that aspect of my disabilities on my lifestyle and on my well-being, (BY WHICH THEY MEANT MY MENTAL HEALTH). I'd never really thought about that before, it caused me to recall the time in my early twenties when I contracted glandular fever. Everybody warned me to be wary of the depression glandular fever causes and I would inwardly smile because, unbeknown to them, I was already a diagnosed chronic depressive and I could not imagine that anything could be worse. I was half right, the depression associated with the glandular fever was not "worse" than that I was already experiencing, BUT IT WAS DIFFERENT: AND IT WAS EQUALLY FRIGHTENING AND DEBILITATING. I was able to point out on the film that the depression which comes as part of the package of physical and cognitive pain associated with arthritis is similar. It is also the case that the depression which came with the "illness" of glandular fever, and that which is caused by the consistent pain and the disabling aspects of arthritis, was/is not relieved by the medication prescribed to alleviate my psychiatric depression.

As you can see, I know from experience that to deny the cognitive effects of both chronic illness, and chronic impairment, on the mental health of those who live with either of these things is ridiculous. Even more ridiculous is the assumption that an inspector has the permission to ignore the impact of living with the affects my defective body and my defected mind have upon each other, in order to "fit" me into some template of what a worthwhile (worthwhile within the capitalist system that is) person is.

The "able-bodied" should take heed of what is happening here. If ever evidence were needed to prove that life in the 21st century is lived as nothing more than a cog in the machine, or that individuality is no longer valued and has no place in a society that places the creation of money above the creation of a caring one, this is it. You who move through life unencumbered by physical disability or psychiatric illness need to join our crusade. As someone who went to work one-day a physically healthy human being and returned and "invalid" I can assure you that you cannot afford to be complacent and perform the “them” and “me” cognitive disassociation this government is encouraging you to do because it prevents you from accepting and empathising with the vulnerability of the human condition. It could be you or one of your loved ones tomorrow, I wonder if you will then continue to condone the bullying, victimisation, and stigmatising that we "disableds" are living with right now. It will be too late then of course, the systems and the recognition we fight for will have gone. And if you happen to be an Atos Inspector I genuinely hope the day never comes that you or your loved ones have to face the future you are creating for me and my community.

Never forget, it's me today, it could be you tomorrow.

Disability & Work: Bullying

A contribution the BrokenofBritain campaign: DWP45: Fit For Work

On March 23rd 2011 during Prime Minister's Question Time imediately before the Budget, Ed Miliband, - who had previously not said one word about this in public despite repeated requests from voters, - asked David Cameron why he is removing the mobility component of the Disability Living Allowance. Although it has been common knowledge that the coalition government intended to do this almost from the point they were elected Cameron, in his usual patronising and sneering manner, said the government had never said they were going to do that.

 

This interaction, and in particular Cameron's role in it, will not have surprised anyone who, like me, has studied the psychology of those who bully and abuse others. Cameron and his colleagues in the Cabinet are all experts at using two of the most disarming and frustrating tactics of the bully. "I didn't do that" or "I didn't say that" are powerful weapons. What is the other person to do? the only logical way of dealing with this would be to use the word "liar" but that's not so easy to do because the challenger knows that if they attempt to do this they will just hit further frustrating walls of denial.

 

I have been observing Cameron's build up to the use of this tactic for several weeks and I am glad that on this occasion I had the confidence to tell my colleagues three days before thatI believed Cameron's denial was imminent, although, I must confess, as Cameron prefers to get others to be his bully boys, I expected it to be channelled through George Osborne in his budget speech. Who knows? Perhaps it would have been if Ed Miliband hadn't come up with this question an hour earlier.

 

As cruel and damaging as the use of abusive language against the disabled has been during discussion of the DLA mobility component, it is more damagingly being used in discussion of the Employment Support Allowance, which has replaced Unemployment Benefit.

Most dishonest is the suggestion that it is the right thing to do to bring under the umbrella of the Employment Support Allowance those who would previously have been placed on what was known as Invalidity Benefit. These people are unable to work because their long-term, often terminal, illness, or some form of disability, has, in the opinion of Doctors and other specialist medical personnel charged with their care, left them unfit, and sometimes incapable, of undertaking paid work because the demands of the commercial “workplace” will be injurious for them.

 

Finding the right terminology to use in order to fight some of the cruel and downright dangerous things that are happening to "the disabled" at this time has been exceptionally difficult because of the “doublethink” that has been initiated by government to justify their actions. This weekend, at about the same time as the real rationale of Cameron and Co's DLA/ESA game hit me, I realised why.

 

The previous benefit for those who could not obtain paid employment was "Unemployment Benefit". But Chris Grayling talks about "Jobseekers Allowance", I'm not sure if this label is his own, whether it was originated by Ian Duncan Smith, or whether it is a hangover from the previous New (old Tory) Labour lot. Whichever it was, my point is that a word which is not applied in the context of the cash benefit is "WORK".

 

The politicians have been very clever. By substituting the word work for employment or job, whenever justifying their bullying of the disabled they have left us feeling both tongue tied and impotent when trying to argue an alternative point of view. They knew, after we have spent years campaigning otherwise, that none of us would feel comfortable saying that people with disabilities (a) cannot work (b) should not work or (c) might be harmed by work.

Having cleverly slipped this ambiguous terminology into the vocabulary regarding disability benefits they have further castrated us (if that's possible) by using the vocabulary of caring, (i.e. work is beneficial to self-esteem), to justify their vile intentions. I know from personal experience and from working for 20 years with adult survivors of childhood abuse, and with children who were describing abuse that had been perpetrated against them, that the most damaging abuse, and the abuse that it is hardest to counter while it is occurring, is abuse perpetrated by someone who claims to be doing what is in the best interest of the person they are abusing, i.e. that they are "caring" about them, that, "this hurts me more than it hurts you".

While the government promotes the view that "any work is better than none", recent research from Australia proves that doing the wrong sort of work is unhealthy and can harm people.The propaganda of Ian Duncan Smith and Chris Grayling has left me and many others feeling driven to despair in the belief that unharmful, unpaid,  “work” we have found, which has a positive effect on our self-esteem and general feeling of well-being, will automatically be used against us at our WCA, the Work Capability Assessment, where someone will decide whether we can continue receiving the equivalent of our current incapacity benefit or whether we will be placed on the lower "jobseekers" allowance.

The cynicism of the government is clearly demonstrated through their manipulation of disability rights history.

20 years ago various campaigning disability rights groups introduced the world to a "Social Model of Disability" to demonstrate that many disabled people who wanted to work were unable to do so because of the barriers society placed in their way. Their ideas were taken on board and became enshrined in the Disability Discrimination Act.

In a callous and dishonest manner consecutive governments have manipulated the underpinning values of the social model of disability, reconstructing it as something called the Psychosocial Model of Disability (see what they did there, clever eh?), A model which distorts psychological theory to come up with definitions of sickness and illness that claim these things are a figment of people's imagination. Basically that you are only sick or ill because society has told you that you are. Presumably, because it is not dealt with adequately by the new theory, we are to assume that our disabilities are figments of our imagination also.

The "Social Model of Disability" has been bastardised to provide the fictional and stereotypical "descriptors" used during the WCA process to assess whether people are really as ill or disabled as they "think they are", - regardless of medical opinion - Those who have formulated the WCA have relied on fictional, stereotypical case studies, often provided by Charities who claim to act in the best interest of “The Disabled”.

Here, I would like to begin to illustrate what an inhuman, demoralising, bullying and potentially dangerous process the WCA is through drawing on the experiences of some real people who have given me permission to do so.

For some the fear, the stress, and the anxiety that bullying brings begins not that the WCA itself but at the very thought of it.

 

A colleague of mine told me the following about her son who is autistic.

“My own son has today asked me to seek help for him and his increasing levels of anxiety. I will of course attempt to do this for him. However I already know that there is no autism specific mental health service from our LA for my son because his IQ is over 70, which is why he has seen no one since leaving Children's Services when he was 16. 8 years is a long time to be left isolated and without provision. It also means that we have no in depth reports to produce as evidence. There are points that have got to be made.”

In a follow-up e-mail she also told me that, although he does not know when it will take place, her son spends several hours each day rehearsing what he might say at his WCA because he is very fearful of making a mistake.

 

There are other areas where this pre-WCA anxiety is particularly cruel and unwarranted. Firstly: there are those persons with disability who have sought stimulation and self-respect through undertaking the many opportunities for voluntary work that the social model and subsequent legislation advocated. Secondly: there is a group, mainly people with psychiatric illnesses, who undertake what was once known as Therapeutic Employment and is now called Permitted Hours. This scheme was implemented because it was recognised that many people with psychiatric illness would achieve a level of "recovery" if they undertook a limited amount of paid employment.

In both of these cases, voluntary work and permitted hours work there has always been an implicit understanding that although these people could "work", that they were highly unlikely to ever obtain "employment" and that even if they achieved "employment" it was highly unlikely that they would sustain it, either because of their impairment or because of the attitude of employers and other workers towards them.

So what about voluntary work? I guess you could say that I'm doing voluntary work now; I probably would not be writing this blog if I had not been approached and asked if I would like to assist with the work of the BrokenofBritain Disability Rights campaign group. I have colleagues and friends who work for other voluntary organisations and charities such as The Samaritans and the Citizens Advice Bureau. We are all extremely afraid at this time that when we are called for our WCA our ability to do these things will be held against us and used to categorise us as suitable for employment.

Because the person carrying out the assessment is not allowed to deviate from the questions on a computerised form we will not be given the chance to explain what adaptations we use to make it possible for us to do these things. I will not be given the opportunity to explain that writing this blog will take me several hours during which I will need to adjust my physical position several times, I will need to combat the side-effects of my medication, and, I will need to alternate between conventional typing (albeit with one finger) and using my dictation software.

Those who use wheelchairs or other mobility aids know they will be channelled into certain “mobility friendly” occupations, and that these occupations may cause them physical and emotional distress in ways that their chosen voluntary work does not. They also know, whether from experience, like me, or from hearsay, that many of the concessions and allowances made for their benefit in their voluntary work place will not apply in the commercial world of "employment".

 

Those who work "Permitted Hours" also fear the pressure that will come in a "commercial employment" environment. The following is contributed by another colleague of mine. Her son lives with the exhausting pressures that result from Schizophrenia.

“Try the question out on my son as an example. Is he able to work or unable to work? He has schizophrenia. Even a psychiatrist can’t say whether my son can work or not. It depends on how the condition develops which he can probably make an educated guess at but also the impact of the stress of trying to work which is less well predicted and the employer/labour side of fear of schizophrenia and tolerance to my son not turning up on bad days and getting hallucinations while he is at work and acting in a bizarre way around other employees and customers.

You can’t say if my son is able or unable to work. The only thing you could say is that my son has considerable barriers to overcome but he might be able to work. That is all you can say for most people with disability. My solution is to help and encourage them and leave them in control. The government solution is to harass them and put pressure and sanctions on them.

Would you say my son could work or couldn’t work?

The answer is that at the moment he does permitted work of eight hours a week but can’t increase the hours because the stress makes the symptoms worse. The DWP don’t like you to do permitted work on benefits for any length of time. The DWP say that this makes you comfortable on benefits. I think it is a triumph of a compassionate system that he is this comfortable. They don’t look at it that way.

At eight hours he needs an earning discount and still needs benefits. He goes in for a few hours on days he can manage. He works in a small firm run by a family friend who understands. If he lost that job it is highly unlikely he could find another.

I don’t think he could tolerate conditionality. He has paranoia. The DWP induce paranoia in me. I don’t think there is any answer to whether he is able or unable to work. And I think most people are in the same position. It is not the right question.

The question should be - does he have sufficient barriers to overcome that it is unreasonable to require him to work. That is in fact the definition in the act of a person on ESA.

So all that needs changing is that help not conditionality like the support group is extended to everyone."

(The "conditionality" and "support group" my colleague refers to are an intermediate step between the WCA and "employment" for those who have been "unemployed" long-term. With entrance to the group comes an automatic reduction in benefits to the "jobseekers" allowance. The conditionality she refers to are progress indicators which the candidate must achieve in order to continue receiving benefit. One of the conditions is that if employment has not been achieved after 12 months the benefit will be further reduced)

So, my colleague's son benefits from his "Permitted Hours” and other colleagues benefit from their voluntary work, while I and others benefit from the work we undertake through our campaigning. But would we benefit in the same way in the structured, pressurised and competitive world of the "Employed". Would we be able to obtain employment, or, perhaps more importantly, would we be able to sustain employment.

 

Most of us who have been employed have tales like this to tell:

The rules for blind reassessment have changed. It is now done on how we navigate ourselves around familiar/unfamiliar places and manage crossing the road! That has been written by a sadist.

I did go to work, briefly, some years after I lost my sight. It took me a long time to come to terms with what had happened to me. It hits different people in so many different ways taking some longer and others never.

For temp work for Christmas money at a turkey factory I had to clock in. I got someone else to find my card and I put a big black cross on it. Reminded me of the sign of the plague. We had to check the dead turkeys for any feathers and I found myself scraping the skin just in case. We had to check sell by dates and I would peer in vain trying to see where the sticky label should be. I bluffed my way for 6 weeks until one day the supervisor called me into her office. She asked me if I had a problem as she got the impression I couldn’t see and I was no use to them if I couldn’t. It was horrible and I left with as much dignity as I could muster asking her to open the door for me. She laughed, told me to “find it yourself you freak” and I tried. It was only when someone else came in that I was able to leave. I was totally humiliated. I walked to a friends house, and I never remember how, and cried my eyes out. I was 40. I tried various other menial jobs but is was always the same. If I told them I couldn’t see they didn’t want me and if I didn’t I was asked to leave when they found out."

My colleague Patricia who wrote that is also full time carer to her husband:

 

I have a similar tale to tell. Patricia’s story reminded me of the time just after I returned to work as a teacher following the loss of another disc.

My walking, not good before that occurrence, was now very slow but, more importantly, I had lost the ability to raise my feet more than about three quarters of an inch from the ground meaning that I shuffled from place to place. At that time I shared an office with four other people and the communal kettle and tea making facilities.

I never found out who was responsible but suddenly the office floor would become strewn with box files, piles of books, empty cardboard boxes, wastepaper bin, etc etc which meant I needed to navigate a very hazardous path from the office door to my desk. I suspected it was a member of staff who resented the fact that the college had provided me with an orthopaedic chair because she, "had backache too". This minefield would always appear between the beginning of my first lecture and my first break on days when she did not teach during that first session. She was never in the office when it was in the state I described and the debris had always remarkably melted away by the time we, as a group of lecturers, came back together for the lunch break. Consequently, whenever I mentioned it, no one else had ever seen it.

In another phoney act of caring, the cynical nod towards human rights through the integration of disability rights into the "Equality Act 2010", the government tells potential employers that they must not ask specific questions about a person's disability at interview (I imagine workplace health and safety officers might have view about that). But, they can ask questions following the interview or if the person is placed on a shortlist for the post (I suspect the number of jobs requiring a shortlist is about to increase dramatically). Applicants are told that they "should be honest" when answering questions about their disability. It is left to the applicant to decide whether the question they have been asked contravenes the terms of the equality act 2010 and to do something about it if they believe this to be the case.

My own post interview conversation would go something like this:

“Well, my spinal injury prevents me from twisting, bending, lifting or carrying. If I cough, laugh, or sneeze while there is pressure on my spine a disc may burst and you will need to send for an ambulance. You must not attempt to pick me up or move me because that might paralyse me from the waist down. If I fall down because the strength goes from my legs you must not move me for the same reason. You will need to bring a chair or something substantial that I can use to lift myself up from the floor in stages.

The painkillers I take come with a warning about driving and using machinery. The driving problem only occurs if pain wakes me during the night and I need to take extra pain relief to get back to sleep. When this occurs the level of painkilling medication interacts with the medication I take for my diabetes and my depression and it may be several hours before my mind is clear enough to drive.

I may be a bit grumpy or distracted on occasions because I am never pain free and I will be unable to numb the pain by taking extra pain relief while I am at work because if I do so I would not be fit to drive myself home. The nearest I ever got to total relief from pain was using the highest strength of the morphine patches that are usually used by people with terminal illness. Unfortunately, as we replaced my tablet regime with the patches we discovered that only the highest dosage would do. I was initially very pleased about this but the adhesive used to attach the patch literally burned my skin away and my immune system would produce fluid to wash the patch away from my skin.

I'm afraid I'll need special dispensation regarding your rule about turning mobile phones of in the workplace because there will be times when I am working alone here and if I fall I need to be able to let someone know that has happened.

Although I cannot drink alcohol because of the various medications that I take you may receive complaints that I am "drunk". This has happened before. It is caused because, depending which nerves became trapped during my sleep the night before, I might be clumsier than usual, I might "stagger" as I walk, and I may not be able to stop shaking. People have also thought I was drunk because my speech can become slurred; this is caused by dehydration, a side-effect of four of the seven different sorts of medication I take each day.

My depression! It is unlikely you will have to help me with that because it is unlikely that it will suddenly become chronic while I am here. The first you will know if my depressive cycle has returned is when I do not appear for work one day. I live alone and, as my mind will no longer be my own, I will not be able to telephone you. I will also be unable to answer any call you may make to me. I have a friend who contacts me every evening to see how I am and when I do not answer her call she will come round to see how I am. It will be her who contacts you the following day.”

And there you have it, an abusive end to an abusive process where I am obliged to expose the full extent of my vulnerability to a complete stranger who is highly unlikely to use that information to my advantage.

 

So, if we successfully negotiate the minefield of interview and shortlist, what next.

No matter how understanding, compassionate, and accepting the people who offered us employment might have been we now have to pass the work colleague test. The examples I quoted above from the experience of both Patricia and myself referred to callous and premeditated bullying by individuals, it is probably true that they would have happened regardless of the culture of those particular workplaces which might otherwise have been friendly, welcoming environments.

However, it is surprising how quickly friendliness, understanding, and goodwill can vanish when employment culture collides with disability culture. The interest that was initially shown whenever we needed to go early or start late because of our regular checkups, treatments, consultations, therapy etc, will disappear quite quickly once our need for a late start or an early finish clashes with the needs of other members of staff. There will also be unnecessary and unwarranted probing should we need to phone in because we have a cold, flu, toothache.

As soon as any of these things begin to impinge on the needs of our co-workers we will become aware of the conversations that stop as soon as we enter a room and of the whispering that begins whenever we are in the vicinity.

In my direct experience these things happen even faster if an employer has made modifications to the work environment or purchased special equipment to enable us to take up employment with them. I can remember withstanding a torrent of abuse and unwarranted criticism because I was perceived to be receiving special treatment when my employer, on the advice of an occupational health specialist, supplied me with an orthopaedic chair.

 

Bullying of the disabled is endemic in the world of "Employment". It begins with the knowledge that an invitation to a biased, insensitive, and for some, physically painful Work Capability Assessment interview, will be on its way at some unidentified point in the future. It will continue during the assessment where the disabled person will be humiliated, bullied, disbelieved, and asked to perform in ways that circuses have been outlawed from asking animals to do.

The "Equality Act 2010" appears to have removed some aspects of bullying and humiliation from the employment interview process but it allows these elements to be introduced immediately afterwards if the disabled person was successful at the interview.

Regardless of the willingness of an employer to provide a paid opportunity for a person with disability, unless all the staff in a particular workplace shares the mindset of the employer, the life of the employed person with disability can be miserable, abusive, and psychologically harmful.

Whenever the common illnesses such as stomach upset or the common cold afflict the disabled person they will be faced with an interrogation and an air of disbelief when they return.

The death knell will begin to ring when the employer, beaten into submission by the complaints and remarks of the rest of the employees, gives up the fight and leaves the disabled person to the mercy of those complaining colleagues in the hope that the disabled person will tire of the abuse and leave.

 

The differences between "Work" and "Employment" are numerous. The competitive world of paid employment is littered with hazards and traps that can drive persons without disability away from a particular workplace.

It is an unfair process that expects a person with significant impairment to survive in such an environment. It is a dangerous process that expects a person with significant impairment to daily face up to an environment which is hostile to their own coping strategies and which endlessly reminds them of the things they are unable to do. It is an abusive process which erodes resilience, self belief, and confidence.

In short, it is bullying.

Brokenbrian.

A contribution the BrokenofBritain campaign: DWP45: Fit For Work



 It works like this:-

Autism: Cradle to the Grave Bullying

I was following this discussion on a message board I subscribe to. My Colleagues Alan and Julia do not blog: I feel very privileged that they have allowed me to pass on their thoughts:

Broken Brian.

From Alan Wheatley

A WORKING LIFE-LONG DISABLED VOLUNTEER SAYS INCREASING COERCION WITH FEWER AVAILABLE RESOURCES TO SUPPORT HIM LED HIM FROM JSA TO ESA WHILE ACHIEVING ONLY SEVENTEEN MONTHS CUMULATIVE WAGED EMPLOYMENT FROM NOV. 1977 TO MARCH 2009.

A GENUINE JOBSEEKER HIGHLIGHTS THE FLAW OF CHEAPSKATE GOVT AND PROFITERS CAUSE HUMAN MISERY BY FOCUSING ON, AND LABELLING NUMBERS OF IB CLAIMANTS AS 'A BURDEN'.

There are now fewer real jobs for disabled people than when I was told by a Manpower Service Commission-run Employment Rehabilitation Centre in 1978 (at age 24) that I was too slow to ever benefit from further govt-funded education and training. Yet I have an invisible disability and an innate determination to develop and use whatever skills I do have, and experienced decades of serial lack of pro-active support from the jobcentre toward prospect of my getting Invalidity Benefit [the predecessor to Incapacity Benefit].

I learned long ago that the system is particularly likely to disregard the eligibility of people with invisible disabilities to disability benefits. Yet people outside waged employment have been subjected to reduced bargaining power and increased coercion, as well as a barrage of smear stories. With the self-realisation in my late-50s that three decades on jobseeker benefits have been counter-productive and left me impoverished and in student debt I am not likely to be able to pay back, my stress levels and anxieties have increased to the point that I now claim DLA as well as ESA while privatisation of the welfare state is creating a welfare state for increasingly wealthy exploiters of human misery who milk public revenues to the tune of billions of pounds.

From the Thatcher years onward, govt-funded training and higher education became subverted as means to massage the unemployment figures while the per-capita investment in the individuals engaging on such courses plummeted. When I did eventually enter university, even with extra time in exams I under-performed to the point that my eventual degree has never helped me get waged work but saddled me with an initial £4K student debt in 1997 that has risen to over £5K on account of interest on unpaid student debt. (And that was from the days when there was still a Mandatory Award!)

In the year 2000 after I had developed my computing skills mainly through my mum's investment in a computer for myself as a much slower learner, I managed to pass the entry test to get an offer of a place on a Web Development course at a 'Positive About Disabled People' training provider. Objecting to the discovery that there was no guaranteed offer of a training placement, and the fact that the training period was just six weeks for such a demanding course-load, I was then told that the course had been twelve weeks long until the Blair govt directed the training provider to halve the training period so as to double the amount of throughput from the dole queue. (And it should be noted that as 'Positive About Disabled People' and 'Investors in People' awards are adjudicated by govt, the status of the training provider regarding those awards was undiminished.)

In the years 1972-1977 I had had seamless but unfulfilling salaried employment at Cadbury-Schweppes in Birmingham, where co-workers likened me to 'Frank Spencer' in the TV sitcom 'Some Mothers Do 'Ave 'Em'. I left on health-grounds to await a place on a govt-funded training course for disabled people, but got subverted into attending a 'vocational assessment period'. Subsequently disillusioned by statutory provisions, I have found that continued time on my own for self-directed learning has been helpful to my health, as has limited hours per week volunteering. Market-led welfare reforms -- in my experience -- only serve the interests of wealthy exploiters of human misery.

Attendance at A4e Holloway New Deal in 2008, by dint of my length of unemployment after leaving 11 months part-time waged employment as a social care worker, operated as aversion therapy for me regarding continued jobsearch on JSA. Concluding that I would rather die than be forced to return to A4e, I sought and obtained help from a local mental health charity toward getting ESA and DLA. I eventually won a tribunal that over-turned Atos/DWP '0' points eligibility points award based on a WCA report that failed to mention my decades of unwaged status before my last waged post, or the fact that that waged work had been so part-time that it was done as a JSA claimant only allowed to keep the first £5 pe week earnings from six hours waged work. The tribunal awarded me 21 points and put me in the (preparation for employment) Support Group.

Needless to say, I have very little liking for market-led welfare reform's 'policy-based evidence-gathering'.
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I would also add that a major difference between my experience of jobseeking as opposed to my experience of volunteering, is that the volunteering posts that I went for were generally on a much less competitive basis.

A great many job applications provide no feedback whatever and that is bad for the jobseekers' self-esteem. Scheme providers far too frequently advise jobseekers in their 'care' to focus on quantity of job applications, rather than quality. With a training company called 'Direct Computer Training' in 1998, I was told off for not having submitted a 'job-search portfolio' with a minimum of 16 'job leads', whereas in fact the one written job application I recorded for that week had involved several hours of editing my CV and a whole weekend drafting and re-drafting my handwritten covering letter as specified in the job ad (six drafts!). And that weekend's work was rewarded with a job interview for a higher grade post than that I applied for. Yet I'm very glad that I was not appointed. The Sheffield-based company expanding into London happened to be A4e!

At A4e in 2008, as part of the 'soft skills training sessions', the rhetoric of the 'Client Advisers' was, "The more jobs you apply for, the better your chances. Ten [sic] job applications per day is good." To achieve that, they advised 'beneficiaries' [A4e's name for those abducted from the dole queue to enter their doors] to send copies of the same CV for each job application -- much the same as we were advised at 'Direct Computer Training'.

By contrast, consider the relevance to jobseeking of what Abraham Lincoln was attributed to have said by songwriting skills adviser Tom T Hall. Lincoln said that he could speak for an hour extemporarily about any subject upon request; but for him to write a memorable three minute speech could take him several days.

How many minutes does an overloaded recruiter spend in sorting the 'long-shot' CVs from those that s/he will bin? Therefore, how much more time does the jobseeker — especially the disabled jobseeker — need to devote to creating a CV that will get them an interview? Would it not be better all round if there was less coercion for people to apply for jobs that they are not really suited to, and for which they are only applying as a response to somebody's ridiculous quota?

(Since Alan wrote this reasearch has emerged from Australia demonstrating that paeople who are obliged to work in the "wrong job" suffer psycological damage and are prone to mental illness. BB)

By contrast, properly supported volunteers with adequate supervision can gain much greater self-esteem. Public service job cuts of the kind that even New Labour have in mind are not the way forward. I have been told that more privatisation of public services went on under New Labour than under the Thatcher Govt. Privatisation emphasises corporate profit, not protecting vulnerable people with adequate resources

Alan Wheatley, age 57

Julia responded to Alan’s Comments

Your story of employment and being labelled early on sounds very much like my Cousin

He was in the 'Special Unit' in primary school due to his violent tantrums, they discovered way down the line he has very poor sight, is severely dyslexic and dyspraxic and much later (as an adult) aspergers has been mentioned. John was always the 'slow' one, your reference to Frank Spencer made me smile, this was how people referred to my Cousin, they still do if they remeber 'Some Mothers Do 'Ave 'Em'.

He left school at 16 and got an apprenticeship in a bicycle shop (he'd been obsessed by bikes and toy cars, taking them apart, putting them together all his life), he lasted until the employer could finish him and moved onto the next, and the next. I don't remember how many apprenticeships / part apprenticeships he went through. He eventually started a degree in Computing, it took him years and years to finish part time, he did have some support due to his diagnosed disabilities by then.

He got a job in a small family owned computer assembling circuit boards firm, he's still there all these years later. The company was sold on a couple of times & John has been kept on as the cheap labour who also makes tea, works long hours and doesn't mind the piss being taken out of him. Always on the same shitty minimum wage salary

John won't move on, at my instigation he did apply for another job a couple of years back, of course by the time he'd perfected and perfected the application form (4 months later), the job was well gone. If he loses this job he's very little chance of securing anything else.

Sorry I've gone on, I just feel a wave of anger when I remember what happened / is still happening to John.

Alan responded:

My disability was actually diagnosed in 1960 [age six-and-a-half] as "mild cerebral palsy with some oedema." But in latter years I have found that dyspraxia [not in the diagnostic books in 1960] is more likely to apply but has not been formally diagnosed. I attended mainstream schooling, with 'A' stream at secondary school and ended in the Upper Sixth Year with more qualifications than my subsequent foods laboratory co-workers did, but fewer qualifications than my upper sixth peers. My lab assistant co-workers complained that as I was slower than them, the boss offloaded my tasks on them. They talked long in works hours about the failings of the union pay scale, but never found the time to attend union meetings outside works hours.

Unlike John, I would have preferred to leave the unsatisfying work environment (foods laboratory) much earlier than I did. My mum and my Gran kept advising me to stay with the 'job security' while I did not want to over-burden them by disclosing the level of verbal bullying I experienced at work. I had built up that habit of non-disclosure since my secondary schooling after the first year class teacher had told my classmates to "make special allowances" for me on account of diagnosed cerebral palsy. (I had not known till the 4th year when a friend told me that I had not needed to tell (["confess to [sic])" him that I had been "born slightly spastic [sic]," that the source of classmates taunts of "Weakly's a mongol spastic" had not been based on their own observations.)

I entered secondary school in 1965 in a different local education authority only months after my father had left us [my mother, my two sisters, and me]. It was through my own self-development work through singing classes and learning to play recorder that I learned to listen to myself more so as to make the 't' sound in 'Wheatley' properly. I do find that when I am most stressed, I am less able to monitor and correct my own performance.

My sisters and mother reckon I have Aspergers Syndrome, a Professor in Speech & Language Therapy friend reckons that dyspraxia is much more likely [although the two are not mutually exclusive].

I can identify strongly with painstaking approach to job application forms, although not quite severely as John.

Alan Wheatley

Julia Responded

Many thanks for your story Alan,

John is 48 now so was just a few years behind you in the education system of the 60's / early 70's.

He still lives with his dad (his mum died in 2007), I don't think he would have survived had he needed support from 'services'.

I think John bought into the 'job security' mantra years ago. If his 'job' disappeared, it would be like tearing a security blanket from a child. Shitty as it is, I fear he would be lost without it, the getting up in the morning & following the boring, sameness exploitive routine of it.

He also likes music, used to play the guitar (loudly as I remember!!!), now devotes his time to Saturday night karaoke in the local pub with his dad!!

I was very touched by these emails so I wrote to Allan & Julia asking: "do you blog? If not I'll happily put your two testimonies (minus names if you wish) unedited onto my blog and then push them on Twitter. I am not a blog "star" I average about 200 hits per blog, but some of my "audience" are journalists and influential people who spread the content further. I would be honoured to give a voice to your thoughts, it can be done by tomorrow."

Alan said yes: Julia expressed the fear of all disabled people and those who know them:

You can use John's story as you see fit so long as he can't be identified, which he wouldn't be just with his forename. (To comply with Julia's wish both John's and her own name have been changed along with two other details that could lead to his identification. BB)

My fear is that he will lose his shitty job due to this 'recession' & be tossed to ultimately fail on the big benefit scrounging scum scrap-heap.

I’ve nothing to add. It’s all been said.

Broken Brian.



For theBrokenOfBritain campaign “Left Out In The Cold” - 2

The Welfare Reform Bill and You.

http://thebrokenofbritain.blogspot.com/p/our-mission.html

If you are following te Guardian Link you want this one

http://brianbeesblog.blogspot.com/2011/03/for-thebrokenofbritain-campaign-left.html

In my first blog for the "the Broken of Britain: Left Out In The Cold" campaign I told you some things about my life and related those to the welfare state as it once was, and then I related my current life situations to the welfare state as it will be if the Welfare Reform Bill is passed by Parliament. In this second blog I would like to talk about what the Welfare Reform Bill might mean for you. Yes, you.

If you read the first blog you will be aware that for most of my life I did not consider myself to be disabled at all. That disability had crept up on me, impairing my mobility when I was in my mid-40s, and completely disabling, (if we take that word to mean putting out of action), me in my mid-50s. What I hope this tells you is that however you feel now there is no guarantee that life and the rigours of living will not play the same trick on you or one of your loved one as it did on me. Before we carry on I would like you to click on the link beneath this paragraph which should open a web page at the top of which there is a photograph I would like you to look at for a moment and then return here when you are ready.

http://bit.ly/dJ6zVs

Welcome back, what did you see? Some might have seen a brilliant artistic image which expresses some facet (your interpretation) of living with a disability, some might have interpreted the photograph as a representation of soft porn and some might have been reminded about an old joke of Billy Connolly's in which he used to talk about finding a place to park his bicycle.

I'm with that first group, when I first saw this image I also saw a breathtaking piece of art but, unlike you, I was already aware of what the model and the photographer were wanting to convey. What you've been looking at is a woman who has exposed herself to discomfort, pain, and possibly illness to fulfil her desire of conveying to you just how it feels to be a member of the community of disabled people who inhabit Britain at this time.

You see someone who is alone, someone who is possibly distressed and who is certainly very vulnerable. Someone who requires assistance but there is no one there who can help. Although it may not have occurred to him or her at the time, the Photographer is a metaphor for the majority of our current society, the “able bodied”, who are observing the helplessness and vulnerability of the disabled community at this time but who are doing little or nothing about it because they also feel helpless, a feeling we sometimes invoke just through our presence.

If you belong in that spectator group it doesn’t mean you are automatically a bad person. Us “Bendies” and “Loonies” become very skilful at interpreting the moods of others and we realise there may be several reasons for your feelings of impotence. It might be because you simply do not know what you should do to help us, it may be because you can't think what you might say to a person whose vulnerability is so obvious, it may be because you've digested the current political ideology which implies that all people with disability could do more to help themselves, or, because of your lack of knowledge regarding persons with disabilities, it possibly hasn’t occurred to you that there is anything to be done. Finally, if you are a member of the current Tory Party you will believe that Kaliya Franklin has exercised her personal responsibility and chooses to lay down eating mud on a wet and freezing cold beach.

With one exception these are all valid points of view regarding the situation I am describing. Many of us "Bendies and Nutcases" would have felt the same way when we were you. We know that now we, through stubbornly refusing every offer of help we receive even when we need it, can leave people wary of offering assistance even when the need for it is obvious. However, I promise you that you would view a scenario like the one above very differently if you were to become one of us.

Right now we do need your help. The reason this government, and the previous one, have targeted disabled people instead of their historic victims, single parents and immigrants, is because those groups now account for a large proportion of eligible voters. They consider we do not. Just as the mentally disabled have been the impoverished, money starved, portion of the disabled Social Services and NHS provision since 1948 because they are comparatively small in number, so the whole disabled community is now considered fair game for institutional abuse and financial disregard by a government who do not consider us to be a significant voting force. They have a point if they are just counting us, but they are forgetting that we all have friends and relatives who also have friends and relatives and that among those people is YOU and you are interested in US or you wouldn’t be reading this, so if you come and join us, and bring your friends and family with you, suddenly WE will become, in voting terms, a significant number.

Whether you are joining us because you have seen the light and now realise that you, or a loved one might become one of us one day, or you are joining us for purely altruistic reasons, WE think we all should have some knowledge of the decimation the Welfare Rights Amendment Bill will bring down on OUR social care and health services which we and our parents paid for with our taxes and National Insurance contributions.

Cleverer people than I have analysed and summarised the bill so I will not try to outdo them because I couldn’t. What I can do is point you to some of the information the politicians are ignoring so that you can form an informed opinion. Okay? Lets go.

Regarding Housing Benefit

In Sept 2010 Citizens Advice Said:
“Proposed cuts to housing benefit will result in higher levels of poverty, debt, rent arrears and homelessness and should be delayed, national charity Citizens Advice says today.”
And much more HERE: http://www.citizensadvice.org.uk/press_20100910

And in December 2010 The Guardian said:
“Housing benefit cut could double homeless numbers, charities warn
Coalition of 17 charities warn government that cut announced in spending review could put 8,000 more people on streets”
And much more HERE: http://www.guardian.co.uk/society/2010/dec/29/housing-benefit-cut-homeless

And on March 7th 2011 The Daily Mail Said:
‘Welfare payments cuts 'will force 200,000 benefits claimants out of London and into the suburbs'
Mind you it was an article warning the suburbs that the scroungers are coming. Still, there’s truth in the headline. You can read more here: http://www.dailymail.co.uk/news/article-1323327/Welfare-payments-cuts-force-200k-benefits-claimants-London.html#ixzz1FvX8KgSL

Regarding Homelessness

On Monday March 7th The Daily Mirror said:
“Feeding homeless to be banned by Tory-run Westminster council”
Read more: http://www.mirror.co.uk/news/politics/2011/03/01/heartless-tory-council-plans-to-ban-charities-from-feeding-the-homeless-with-soup-runs-115875-22957295/#ixzz1FvZ4LAeI

Regarding Unemployment Benefit

On 23rd Oct 2010 The Welsh “Public and Commercial Services Union” said
“Nine jobseekers for every job in Duncan Smith's Cardiff”
And much more at: http://www.pcs.org.uk/en/news_and_events/news_centre/index.cfm/id/805C3E5F-1FBC-4647-8542B4A1D9A439F6

Regarding Incapacity Benefits

On March 6th 2011 The (Scottish) Daily Recorder said:
“Sickness benefit clawback firm tells GP people are 'claimants, not patients”
And much more at: http://www.dailyrecord.co.uk/news/scottish-news/2011/03/06/sickness-benefit-clawback-firm-tells-gp-people-are-claimants-not-patients-86908-22970435/
And
On 26th Jan 2011 Full Fact.org said:
“The latest welfare figures have again been subject to misinterpretation among certain newspapers. Yet the Daily Mail has gone further than most - suggesting 94 per cent on incapacity benefit can work. However the figure did not stand up to much scrutiny.”
And more Here: http://fullfact.org/factchecks/incapacity_benefit_94_per_cent_can_work-2458

Regarding “The Cuts”

On 5th March 2011 “The Guardian” said:
“Benefit cuts will leave a third of UK 'too costly for low-income households'”
And more Here: http://www.guardian.co.uk/society/2011/mar/05/benefit-low-income-households

Because there is a great deal of info on DLA on the tBofB site I have not included that here

PS: If you are still wondering, the comment in paragraph 4 that wouldn’t be acceptable in paragraph 5 was:

“if you are a member of the current Tory Party you will believe that Kaliya Franklin has exercised her personal responsibility and chooses to lay down eating mud on a wet and freezing cold beach.”

Did you get that? Good, you’re learning fast.

http://thebrokenofbritain.blogspot.com/p/our-mission.html

Broken Brian



For theBrokenOfBritain campaign “Left Out In The Cold"

A Cycle Of Deprivation: The Welfare Reform Bill and Me.

http://thebrokenofbritain.blogspot.com/p/our-mission.html

I came to disability and welfare quite late in life. Although I had lived with depression since I was a child it was not until my late 40s that I first considered myself to be "impaired" and that was for a different reason. It was seven years later and I was in my mid-50s when I was forced to come to terms with the fact that I was now a person with disability. Is that confusing? Indulge me for a moment while I explain how I arrived at the point that sees me writing about this matter.

I was born seven years after The Beveridge Report laid the foundations of the Welfare State and 18 months after the welfare state "went live" in mid-1948. This meant that my healthcare was free, that I would be educated for a longer period than those who were born four years before me, and that, following the breakdown of my parents marriage and our subsequent eviction from the RAF married quarters we had lived in, my mother, my sister's, and I returned to the town where I had been born to a newly built council house.

When my sister and my brother were born (1946 and 1948 respectively) it was in a hospital owned by the local authority and my parents had to meet some of the costs. By the time I was born in December 1949 that same hospital had been purchased by the Government for the new National Health Service and it was cost free. This was just as well because my brother died in the same hospital two weeks after I was born at just around the time that my mother was being told that I had a severe stomach complaint which made it highly unlikely that I would live. I required an operation that very few "babies" survived due to their lack of physical resources.

I guess it was fate that someone came up with the medicinal "cure" right at that time. It could have been more than fate because the medicinal cure had such limited success that by the time I returned to manage the social work team in that same hospital 43 years later the operation was once again the preferred treatment and the mortality rate was still quite high.

The Welfare State did not do much in the way of financial handouts during its early years and so my mother my sister's and I lived in poverty because most of Mums wages from packing biscuits into tins were consumed by our rent and her bus fares to and from work. (If she was still alive I think my mum would like me to mention here that she had been a schoolteacher in India where she was born but her Indian teaching qualification was not recognised in the UK at that time).

For many reasons I spent most of my childhood believing I must be some sort of Alien. Emerging each day from our scruffy house in my scruffy clothes, and I was aware, because I was constantly being reminded, that I had nearly died. I was also very aware that my brother died as I was born and privately I wondered if he had to go in order to make way for me. My “childhood” was quickly over as I shared Mum’s anxieties about where our next meal would come from, there was no time in the life of an Alien for the luxury of childish thoughts. Within my own home I assumed the role of court jester bringing laughter to mum and my sisters with comedic actions and language while, when away from them, I was intense to a degree that confused my school friends.

And so it was that by the age of 11 I had learned very well the skill of concealing my innermost thoughts behind a veneer of humour. I had also learnt to put an invisible shield between myself and the taunts from others regarding my appearance, my ethnicity, and my parentage, (it was very unusual back then for a father to be absent for any reason other than death and so the word "bastard" was heard fairly often when my sisters and/or I was out and about.

The intensity, the veneer of happiness, and, the invisible shield all stood me in good stead as I entered the adult world and began to acquire the social skills required in that environment. Despite my depressive episodes I am one of the few people I know who can say that I truly have achieved all of my ambitions, this is because after a very bad experience with colleagues after returning to a workplace following an incapacitating bout of depression, I vowed I would never put myself through that experience again. So, after leaving school at 15 because my family needed a wage, I spent my late teens making and mending things, I spent my twenties selling things, I spent my thirties computing things, I spent my forties "Social Working, and I spent my late forties and my fifties (up to the point I ceased work) Teaching.

My disability career was running a parallel course, it meandered something like this. From the age of about 10 I have been resisting the attempts of my depression to totally consume me. I had my first prolonged episode of depression when I was 18, luckily it occurred while (and perhaps because) I was recovering from a knee operation following a serious football injury. I was able to pass off my low mood saying it was because I feared I would never play football again while, the truth was that I was combating endless thoughts about ending my own life.

These deep depressions have occurred approximately every 5 to 7 years of my life and, with the exception of that first one, are preceded by a period of hyper-activity. In 2005, following the most severe and prolonged episode I had ever experienced up until that point, I was given a diagnosis of bipolar disorder.

The point I'm trying to illustrate here in the context of the Welfare Reform Bill is that apart from one period of six weeks and one other of three months my strong "working-class" work ethic motivated me to take the minimum time away from work in order to remain employed. As I was employed in a senior management role when each of those episodes occurred my salary was paid by my employer throughout my time off work.

That three month episode came at the end of a period when I had spent three years overseeing the computerisation of the company I was working for, and it came four years after I became involved in voluntary work near the end of my twenties. The more I became involved with the computerisation the less I was involved with people in my professional life and I began increasing the amount of voluntary work I did to compensate for this. After the breakdown, and with the help of the staff at a mental health residential crisis centre where I stayed for six weeks, I realised that I could not carry on doing what amounted to two full-time jobs. A decided that as my main source of "job satisfaction" came from the voluntary work I had to find a way of becoming a professional social worker.

The steps I took to convince potential employers that I was over the effects of the breakdown and to obtain a relevant qualification are too lengthy to relate here. Suffice it to say that it was 10 years later and I was a children and families social work area manager when I became mobility impaired.

Following my legs becoming numb on a couple of occasions and the onset of chronic back pain and sciatica I was told that my spine was beginning to crumble away from the bottom upwards. Two discs had "burst" and arthritis was moving into the space that was left. Various nerves were being compressed because of this.

There was no real explanation. One specialist believed that a poor diet as a child had left me with a condition akin to osteoporosis. Others felt there were signs of twisting injuries and impact injuries that I must have collected over time. All agreed that I should give up working immediately because there was a high risk that some of the debris left behind, or the next bursting disc, would compress my spinal-cord causing paralysis. I was 47 at the time and they said I had the spine of a 90-year-old. They said that if I was 90 years old they would operate. The operation would allow them to do things to relieve the pain but carried a very high risk of causing paralysis which, they said, wouldn't have mattered if I was 90 but they felt I was too young to take that risk at that time.

I asked for the worse prognosis, they said I would be paralysed below my waist. I asked If I would avoid becoming paralysed If I sat still from that day until I died, they said not necessarily. They told me coughing or laughing while I was in the wrong position could cause paralysis. I asked if I would definitely be paralysed if I carried on working, they said they could not say that would definitely happen, it would all depend where I was and what I was doing at the time the next disc burst.

Occupational health said I could not return to my job with social services because I was in a role where there was regular contact with people who might become violent. I took my lump sum and my pension and began to look at alternatives.

(Once again, because of the role I was in, my salary was paid throughout the period described immediately above. I used my pension and my lump sum to finance what I describe below. It is important to remember here that up to this point I still had not applied for any benefit of any kind. During the period when there was a strong possibility that I would be unable to do work of any kind I contacted National Insurance regarding my state pension contributions. I was told that I had already paid in sufficient funds to guarantee receiving a full state pension when I am 65).

I wondered about jobs I could do which I would be able to continue doing if I were to need a wheelchair to move myself around, the two skills that I had obtained during my time in social work, and in voluntary work before that, were skills at counselling and at training social care staff. So at that point with the aid of painkillers (which to be honest aren't very effective against nerve pain) I began my first adult education teaching qualification and counselling qualification. After a few months it was obvious that the counselling qualification would probably never be used because I couldn't sit in the same position for more than about 5 min and so I put all my energy into obtaining the teaching qualification. I'm very glad I did that because although it was only six years my career as an adult education lecturer was one of the most fulfilling I have undertaken. What began as a part-time post while I tested my physical limitations soon became a full-time one and I moved from the Oxfordshire countryside into London to cut out the commuting which was often the most painful part of my day.

It was halfway through my teaching years that I first applied for a benefit. When my 10-year-old car needed replacing I applied for a DLA mobility grant. I was successful and I also obtained lower rate DLA to pay a cleaner for a couple of afternoons each week to perform the cleaning tasks that I am unable to do for myself.

Another disc burst in 2002. On that occasion a minor surgical procedure, a steroid injection into my epidural cavity, was used to relieve some of the pain and I was able to return to work after a couple of months.

That was the way it stayed for the next three years. Me, too absorbed in my career to even consider the fact that I might become depressed again and rising to the challenge of continually finding new and different ways to manage my pain. My training in those early years where I taught myself not to worry about being scruffy, weird, or a bastard, stood me in good stead and it didn't bother me one bit that I now walked like Donald Duck on a bad day.

And then it came, during the summer holidays, that morning when I woke and it was the other Brian who was sitting there. Severely depressed, I was unable to decide whether or how to get out of bed, confidence gone, happy memories replaced by nagging guilt. Hours blurred into days of sitting unwashed, unfed, uncombed, undressed, until my ex-wife, who is still my best friend, arrived for a visit and found me. I had forgotten she was coming. I hid the letter I had written to my cleaner apologising to her for my decision that she should be the one to find my dead body because she was not emotionally attached to me.

And that was it, having lived with me through two other periods of acute depression my friend instantly knew what was going on and made the necessary telephone calls to the medics. Within two days I was sitting in a meeting at the psychiatric day hospital where I was offered the choice, (if that's what it was), of either attending the day hospital every day or of being sectioned (psychiatric jargon for compulsory admittance to a residential psychiatric hospital). I didn't realise at the time but that was the day on which I became disabled.

Although I was profoundly depressed I began attending the day hospital believing that, although it didn't feel like it, at some point I would emerge from the hospital a fully functioning person once more. This time it wasn't to be.

With the new hospital came the new diagnosis and with that came new antidepressant medication.

After each of my previous severe bouts of depression I had eventually reached the point where I had weaned myself off of whatever medication I was on. This wasn't really very hard to do because most psychiatric medicines are of limited use or they come with a cocktail of side-effects which are in themselves a massive incentive to get off the drugs. The first new medication that was tried made things worse instead of better, (not an unusual occurrence with psychiatric medicine), but the next thing they tried was quickly in control of my suicidal thoughts and the side-effects were minimal.

The new medication has proved very successful at flattening down the emotional effect of the most destructive of my thoughts but, possibly because I lost the love of my life during that period, my mind appears to have lost the ability to lift itself totally clear of the cloud of confusion that engulfs me.

I now live with a similar prognosis from both my psychiatrist and my back specialist who each state that everyone with chronic back pain sufferers a degree of depression but that since my depression is acute they believe, (and were proved correct when I undertook some voluntary work a couple of years ago) that these two chronic conditions impact upon each other with such force that it is inevitable that if I subject myself to high degrees of either emotional or physical stress that I will be setting myself up for a life spent permanently bouncing between stronger psychiatric medication and unsafe levels of painkillers. And that is my life now.

So what does the Welfare Reform Bill mean for me?

1: without my motorbility car I would not be able to leave my home because I have been medically advised that it is highly dangerous for me to travel on public transport. The nearest shop is 200 yards away. On a good day I can walk there in 15 min but I am not able to carry anything back that I cannot put into my pocket.

2: the lower rate of DLA ceased to be adequate to pay a cleaner for more than one hour per week about two years ago. That one hour is basically used by my cleaner to ensure my home is hygienic. If I lose my lower rate DLA allowance there are jobs, mostly concerned with hygiene, that simply will not get done.

3: I will be called for Work Capability Assessment at some point in the future and following that assessment regardless of the fact that both my orthopaedic and my psychiatric consultants say I must not work I could be assessed as being capable of work. If that happens my benefit will reduce and I will lose my home. If I have not gained employment within 12 months I may lose my benefits all together.

4: I am 61 years old. In four years, when I reach retirement age, it is possible that I will lose my motorbility car (see 1).

5: I paid National Insurance Contributions for 40 years. For many of those years I worked when others with psychiatric and physical problems the same as mine might not have done so. I was told after 32 years that I had paid sufficient contributions to be entitled to the full state pension. Now, that might not be the case.

I used to teach my students that sociologists speak of a “cycle of deprivation”. I was born into poverty and spent my childhood living in poverty. Throughout my adult life I have worked hard and honestly and although there have been many occasions on which I could have extracted money from the public purse I did not do so. If the Welfare Reform Bill goes through it is almost certain that having risen from underclass through working class to middle-class, that I will spend the last years of my life back in the underclass and living in poverty. That is the cycle of deprevation.

Broken Brian

http://thebrokenofbritain.blogspot.com/p/our-mission.html

Charities: Working 4 or Doing 2?

This is the first of what will be an occasional series of blogs pointing out incidences of Charities forgetting who it is they exist to represent and, sometimes, becoming self-serving instead. I write this as someone who has requested help from charities when at my most vulnerable and then experienced what it feels like to be betrayed for not fitting into any of the shapes on their eligibility puzzle. You know, like those children’s story puzzles where the child fits different cut out characters into the corresponding hole in a picture attached to a wooden base.

The views expressed below are mine, supported by friends, family and the professional carers who assist me in various aspects of living. They have read the report under discussion during visits to my home. I have also taken account of views expressed by members of disability forums I visited prior to writing.

1: In March 2011 people who are still receiving “Incapacity Benefit” because they were already on that benefit when ESA was implemented, will be “Re-Assessed” at a “Work Capability Assessment” where an “Assessor” will have the power to remove them from the higher, health or disability related component of ESA, and place them on the lower, work related component of that benefit.

2: Because both the WCA process and ESA have already proved to be unfit for purpose three charities: Mencap, Mind and the National Autistic Society were asked by Professor Harrington, head of the Independent Review of the Work Capability Assessment (WCA), to propose amendments to the WCA descriptors relating to mental health, autism and learning disabilities. The scope of this piece of work was defined by Professor Harrington. This is our response to their combined report dated December 2010. It is not clear whether any “users” of these charities were involved in the consultation process, though what is written in the paragraph (see c) below suggests this is very unlikely.

We are amazed, but not surprised, that the three charities in question, namely, the National Autistic Society: Mind: and Mencap: have taken it upon themselves to represent all psychological and psychiatric service users for the following reasons.

a) As potential beneficiaries from another Draconian change proposed by the coalition government i.e. the changes to Disability Living Allowance, we believe it is highly unlikely that these charities have been able to remain totally objective in responding to Professor Harrington.

b) It is our belief that all individuals and organisations who purport to represent persons with disability should be loudly opposing all of the proposed reductions to assistance for the most vulnerable members of our communities. In particular, the proposed changes to WCA, ESA and DLA would appear to be being rushed through at a dangerous and inconsiderate speed based on political ideology rather than any benefit to the people whose lives they were implemented to enrich.

c) We are surprised that the following paragraph appears in the report compiled by the charities:
“We believe that Professor Harrington has presented us with a unique opportunity to reform the descriptors that underwrite the WCA, and we were keen to engage with this opportunity. However, it should be understood that this work has taken place within a very short period of time. Because of the time restraints imposed on this piece of work, it has not been as extensive or comprehensive as it should have ideally been.”

At best this is an outstanding admission of betrayal of those these charities purport to represent. At worst it demonstrates that these charities were seduced into undertaking a purely cosmetic exercise. How dare these people who claim to represent us let us down by undertaking a “piece of work, it has not been as extensive or comprehensive as it should have ideally been”.

We believe that by colluding with Government in this way these charities have returned to pre-1980’s philosophy that promoted the view that the long-term sick and disabled should be grateful for any crumbs that fall from the tables of the well off and the able bodied. They have given government the message that all we are worth is a rushed, cobbled together, incomplete piece of work. If they truly represent the people they claim to they should have refused to embark on this task under these conditions. They should have insisted, on our behalf, that government should postpone the planned changes in WCA and ESA until a comprehensive and far reaching piece of research that includes the views of the long-term sick, of the disabled, of the mentally ill, and, of those with learning disabilities, along with the views of the medical professionals, carers, and others who support these people in the community.

We believe that in their indecent haste to dance to the government's tune the three charities have published a report that fails to adequately address the hasty and poorly thought out propositions of the government. We believe that in the time allowed they could have made the following challenges to the government's propositions and the discriminatory and stereotype laden language that is used therein.

i. Incapacity Benefit was paid after assessment by at least one, and usually several, medical professionals. For any organisation purporting to represent those who receive this benefits to collude with a system which seeks to remove that benefit with no reference whatsoever to the medical professionals involved in the original decision, either in writing or in person, is both dangerous and outrageous. The assumption of the coalition that the medical professionals on whom persons of disability rely are somehow involved in perpetrating fraud is arrogant and undermining of the medical professions. We believe no person or organisation purporting to represent us should have embarked on any discussion on "Work Capability Assessment" without insisting that professionals of any discipline, along, where necessary, with the carer of the person being assessed, are involved in any reassessment of the abilities of the person under assessment. We believe we have been let down in this instance.

ii. An assumption of guilt underpins the philosophy behind the Work Capability Assessment of those who've already been deemed to be deserving of benefit. This is implicit in the proposal to reduce the amount of benefit paid to vulnerable, ill and disabled persons before the assessment is carried out. No other members of British Society are treated in this way. It should be the role of individuals and organisations representing persons with disabilities to remind government that persons who have been moved up to the long-term rate of incapacity benefit are, by definition, long-term disabled and therefore regularly in touch with medical persons who are qualified to assess whether returning to the workplace is in the best interest of that person. We believe that no person or organisation purporting to represent us should have embarked on this exercise without first insisting that this assumption of guilt be removed. We further believe that by colluding with this presumption of guilt the charities have assisted the government in increasing the stigmatisation with which we daily live. We believe we have been let down in this instance.

iii. While taking part in this paper exercise the three charities have utilised case studies which serve only to reinforce stereotypes of disability. Only persons ignorant of the reality of living with disability would facilitate laypersons in reducing the symptoms of multifaceted conditions such as MS or Depression to a micro-level that assumes all persons with those conditions are the same. We believe that no person or organisation purporting to represent us should allow others to perpetrate the stereo typing of disabled persons in this way. The least we expect of those purporting to represent us in our absence is that they challenge any act that encourages the stereotyping or stigmatising of those with disability. We believe we have been let down in this instance.

iv. Through undertaking an exercise that used assessment based on "descriptors" the charities have further colluded in reinforcing stereotypes. The assumption that all persons who live with a particular condition or disability will behave in the same way during the interview is an outrageous and insensitive one. Although, through the reports, the three charities challenge most of the descriptors, they then embark on the collusive act of coming up with their own suggestions. We believe that any individual or organisation purporting to represent us in our absence should have refused to embark on this exercise. The least we would expect of those representing us in our absence is that they would continually reinforce the individuality of each of us and the quality of each of our lives. We believe we have been let down in this instance.

v. The vast majority of people who live with disability would love to be able to work, earn money and further their independence. Many of us already do voluntary work which we now feel we may have to give up because this will work against us at our WCA assessment. We live with the realities of our condition knowing that although we may be able to work in an unpressurised and supportive environment, the commercial workplace will not be like this. We know, many of us from experience, that the moment we need to take time off for illness, aggravation of an existing condition, hospital appointments etc. Employers and/or work colleagues will view us as a liability rather than an asset and that many of us will be asked to leave for that reason. The result will be trying to live on a benefit that is inferior in value to incapacity benefit even though our impairment renders us unemployable in the job market. Many of us, through being deemed "fit for work" will have lost our DLA because of the new criteria in assessing that. We believe that through colluding with this exercise those who purport to represent us have condemned us to a life spent in a deprivation cycle. The least we would expect of those purporting to represent us in our absence is that they would require others to consider the long-term implications of what is being proposed. We believe we have been let down in this instance.

vi. The government have warned us that many people will become unemployed over the coming years. To expect persons with disability to compete in the job market at this time is a callous and uncaring act because the disabled person competing for a job with someone who is able bodied will be at an immediate disadvantage for many of the reasons stated above. The three charities, in becoming involved in this exercise, have added their support to legislation that is no more than a cynical attempt to remove disabled persons from invalidity benefits and place them on the inferior jobseekers allowance. For the reasons stated in this paragraph there can be no other outcome. The least we would expect of those purporting to represent us in our absence is that they would challenge such a cynical move, not collude with it. We believe we have been let down in this instance.

vii. Mencap, The National Autistic Society, and, Mind, are guilty of colluding with a government who show total disregard for Human Rights Legislation and to seek to wipe out the progress made under the Disability Discrimination Act and the Social Inclusion policies of the previous government. This is being done purely to suit political ideology, while claiming to be acting in the best interest of disabled persons these three charities and the government are doing precisely the opposite. The least we would expect of persons and organisations purporting to represent us in our absence is that they stand up in the face of political bullying and seek to remind those in power of our rights. We believe we have been badly let down in this instance.

Finally: by their own admission the three charities have undertaken a rushed and incomplete piece of work which will be used to support the policy of the government in March. We would argue that Mencap, the National Autistic Society, and, Mind, demonstrate that they are not fit for purpose through their collusion with the government over these matters. Those who purport to advocate on our behalf have allowed themselves to be drawn into a consultation process the purpose of which is to gain respectability for acts which amount to bullying and victimisation of some of the most vulnerable in our society. We believe that individuals and organisations that purport to represent us in our absence should, at the very least, refuse to be used in this way. We believe that the three charities named above have betrayed those they purport to represent. We expect them to say that without their input the legislation would have gone ahead anyway, and they will probably be right, but, it would be going forward without the endorsement of those "respected charities" whose names will be used to convince the public that what is being done is right.

In conclusion: We are discussing a matter on which all three of the major political parties in this country are refusing to either represent or support us in our fight. The least we expect of those individuals and organisations purporting to represent us in our absence is that they would publicise and draw attention to this disenfranchisement: not collude with it.