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? - 2

This is the second of 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 rejected and 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.

Today I have faced with a dilemma. How should I deal with the actions of a charity which I hold in great esteem, - not least because I have met, and trained in one aspect of their work, several of its employees and was always extremely impressed by the work practises they described – which has allowed itself to be used by the Daily Mail to validate the callous, vindictive, uncaring, and, worse still, "ethnically cosmetic" intentions of the Conservative Westminster Council to ban other charities from delivering food to "the homeless" who live "rough" on its streets.

The unattributed article was even more nauseous than that newspaper's reports of social issues usually are because it was couched in the terminology of a caring society. The “Daily Mail Reporter” used quotations from the chief executives of both "St Mungo's Homeless Charity" (who I was referring to above), and the "Thames Reach Homeless Organisation", to justify the actions of the Council and to override criticism from Labour councillors and other charities.

As someone who has had his own words manipulated by the media to present a picture that was not intended, I do not think for one minute that the cherry picked quotations were the only things that these chief executives said in response to a question the content of which I do not know, but in the absence of any retraction by either of them I have to assume that they were satisfied that what was printed represented their true view.

In my previous posting on the subject of charities allowing them-selves to be manipulated to suit government policy I pointed out that whatever the true intentions of those charities their words and their compliance would be used to justify unpalatable government intentions. In the case of St Mungo's I sincerely hope that is what has happened here, and that they learn a lesson from the chief executive’s gullibility.

Regarding the dishonesty and lack of integrity demonstrated throughout the Daily Mail article, it is highly relevant that at no point does the author draw attention to the previously stated "cosmetic" wish to remove rough sleepers from the streets of London before the 2012 Olympics take place. Yet another charity chose to see that intention as something they could support and, as you will see below, did not intervene when physical discomfort was deliberately inflicted on their “client’s”. An article on this subject entitled “How the 2012 Olympics will end rough sleeping” by Jeremy Dunning in Community Care.co.uk on December 21, 2009 (link 1 below) contained the following regarding the “tidying-up” of rough sleepers:

“Homeless Link chief executive Jenny Edwards says the Olympics "gives us a very nice, particularly high-profile timetable around which to achieve a once-in-a-lifetime offer", while Richard Blakeway, director of housing for London mayor Boris Johnson, says it is taking "a unique moment in time" to end something that has been "symbolic in London for several decades".”

The article went on to describe how, since 2008, funding had been made available to various charities and organisations to assist them in setting up schemes to offer alternatives to rough sleeping in the capital. Towards the end of his article Jeremy Dunning says:

"The initial focus has been on the 205 most entrenched rough-sleepers, of whom only 67 now remain on the streets."

I will proffer my opinion of why those 67 might still be choosing to live "rough" below, but first, another quote from Jeremy Dunning's article, one which shows how the original collusion of the charities was abused once the "caring approach" had not completely eradicated the problem. Jeremy Dunning said:

“However, there have been criticisms over the use of enforcement measures such as antisocial behaviour orders, dispersal zones and the practice of "wetting down" doorways in the City of London through the Corporation's Operation Poncho, run in partnership with the police and homelessness charity Broadway”

I wonder whether those who donate to the "Broadway" charity are aware of how their donations were used.

Those Charities who purport to represent the most vulnerable members of current British society need to become "streetwise" and wake up to the fact that the Conservative Party Ideology of the 2000’s demands a return to the days of the "Deserving" and the "Undeserving" Poor, a concept retained by a minority of very small, mainly religion orientated, charities since the early 1900s, but discarded by most as a flawed concept since then.

Regarding the 67 rough sleepers, their reasons for preferring to sleep “rough” deserves to be understood, not used as an excuse to “ethnically cleanse” them from the streets of Westminster. I know from my own experiences as a social worker that there are people among us who quite simply find it impossible to live securely in either a family or a structured communal setting.

One fairly common scenario is this: a child is removed, or escapes, from a family in which he or she suffered abuse. The Children Act 1989 rightly states that wherever possible that child should be placed with another family, usually a foster family. Unprepared for the fact that even abused children will miss their family, the foster family, and sometimes, disgracefully, the social workers involved, fail to read the signs when that child begins to display the aggressive and/or disruptive behaviour which is a necessary component of the grieving process. Based on their own experience of family, and the belief set that says any child will be grateful, and happy, and compliant, once they are removed from their original situation, the child is labelled uncooperative, disrespectful, even, dangerous or mentally ill, because he or she is unable to make use of the help that is provided in the way the foster parents and the social worker believe they would do in a similar situation. The next step for our hypothetical abused child, or for any child who enters the care system above the age of about 10 years, is a move to "Residential Care" where another grieving process begins but where staff will already have made up their minds about them based on what they have been told. Staff will consider them to be either potential troublemakers or damaged Angels. Those who label them “troublemakers” will soon find evidence to prove their assumption correct; those who take the damage angel approach will feel rejected when the child is unable to return kindness and will become as disillusioned as the foster carers were, excusing their original, caring, stance, by labelling the child a manipulator who initially “took them in”.

Whichever path they followed within the statutory care system all children leave that "Supportive Environment" emotionally abused by the experience. Some will also have been physically or sexually abused by other residents or by individual staff members.

To expect those who have experienced rejection and/or abuse from family members, from friends, or from professional carers, to fit willingly, seamlessly, and gratefully into another family or residential environment is ridiculous.

While the scenario described above will fit many of the 76 "unwilling" rough sleepers referred to in Jeremy Dunning's article, it is probable that the biggest group represented by that statistic (which will also include many of those described above) will be those with some form of mental illness.

Among those of us who live daily with psychiatric illness will be some who are afraid of people, some who are afraid of society, some who are afraid or mistrustful of the police and the psychiatric care services (because those professional groups have misinterpreted their thoughts or words in the past and, in the opinion of those who are ill, will have locked them up just because they are who they are). Then there are those who are afraid of all of these things. Whichever group they fit into most of those 76 will be afraid of life itself.

Every one of us who has been diagnosed with a psychiatric illness has been emotionally abused, usually unknowingly, by a "Care System" that claims to protect us. Some of those who have spent time either willingly or unwillingly as a patient in a psychiatric hospital will possibly have been physically attacked, sexually abused, or raped by another patient, or, by a member of staff.

To expect those who have lived through the worst extremes of the mental health "care system" to fit willingly, seamlessly, and gratefully into another residential environment is ridiculous.

In my opinion these are the things that the chief executives of St Mungo's and the Thames Reach homeless organisation should have been saying to the Daily Mail yesterday. They should not have been colluding with the ongoing persecution and abuse of those they purport to represent.

Regarding what was said in the unattributed Daily Mail article (link 2 below): I have contrasted it with a report from Jason Beattie of the Daily Mirror (link 3 below).

"Unattributed" begins his or her article in terms which are as devious as those being used by Westminster Council regarding this matter:

“Proposals for a ban on soup runs and rough sleeping in a part of the centre of the capital have sparked a political row. Westminster City Council is seeking to pass a bylaw that would prohibit soup runs from operating in a designated area around Westminster Cathedral. Labour councillors have attacked the proposal as 'cold-hearted and callous' but the council says soup kitchens perpetuate homelessness and insists it has the support of interested charities.” (authors emphasis).

I am not sure if this is the first instance of the words of charities being used in the manipulative manner I previously predicted, but it certainly will not be the last. You will note that it is the support of the charities that Westminster Council and the anonymous reporter use to counter the socialist perspective. That ploy is based on the assumption that we all believe that charities only act in the best interests of those they say they care for and protect.

Jason Beattie began his article on the same subject like this.

“THEY spent much of the run-up to the election trying shake off their image as the nasty party. But a heartless group of Tories have ¬revealed their true colours by banning charities from running soup kitchens for the ¬homeless.

Conservative Westminster council in Central London also wants to make it an offence to sleep rough – while slashing £5million of funding to hostels. Astonishingly, town hall chiefs claimed soup kitchens only “encourage” people to sleep on the streets.”

It goes without saying that Jason Beattie is also reporting from a politically ideological perspective, one which is opposite to that of Mr or Miss "Unattributed", but it is the words used by the council, and not those of some supposedly independent and unattached body, that he uses to emphasise his point. The truth is that Mr or Miss Unattributed could not use the terminology of the council to support the proposition because it is clear as you read the remainder of the article that everything that the council said exposes its true intentions to anybody with half of a social conscience brain cell.

The Daily Mail first uses a verbal gift from a co-operative charity like this:

“Jeremy Swain, chief executive of Thames Reach homelessness organisation, said: 'Street handouts do little to help people make the step away from rough sleeping. Instead they frequently prevent people from facing up to the reality of the harmful life-style they have adopted.'”

Here we have a classic return to the deserving/undeserving poor ideology. The deserving are those who go along with what their "betters" say is good for them. The undeserving are those who do not. If you didn't understand why I was illustrating my intentions with the description of the wooden jigsaw puzzle above, hopefully you do now. Interestingly it is also similar to the ideology that the Nazis propagated to justify putting vagrants into concentration camps. It comes down to this, everyone is entitled to make choices regarding their lifestyle but if those choices are out of step with the ideology we propagate, then they are both inferior to us and undeserving of any form of help other than the help that we have decided they need. Since they do not agree with us they do not deserve to be helped.

"Unattributed" then uses what was said by Charles Fraser of St Mungo's to present the uncaring face of charity as influenced by Conservative Party ideology.

“Charles Fraser, chief executive of St Mungo’s homeless charity, added: “While we recognize the compassion involved in providing food to vulnerable people, those in distress and rough sleeping need services that will support them off the streets for good and give them the opportunity for longer term better housing, health and work as they move on with their lives.””

I was very sad when I read this assumption that people are failing if they do not “move on with their lives”. The St Mungo's front line workers whom I have met all understood, without needing to be taught, the potential scenarios I described above to explain why some people will always find it difficult, even impossible, to live comfortably in a residential setting. It would appear that Charles Fraser does not share the awareness of his frontline workers, either that or he has lost sight of the fact that his charity exists to serve the mentally ill and the homeless and has chosen to serve the ideology of the current Conservative Party instead.

This ideology returns social care provision to the position it filled before human rights legislation led to it adopting the "client" or "patient" driven services we have become used to since the early 1990s. With that change came a period during which the government took money away from local authorities and gave it directly to "service users" in the form of Disability Living Allowance. One knock-on effect of this was that the local authorities reduced the money they gave to charities, rightly claiming that the “service users” now controlled the money in order to purchase whatever services they required from whoever they wanted. The charities were threatened by this, they were now accountable to the purchasers of their services in a way they had never been before. The current government has decided to take the DLA from some people who receive it now and to give the money they recoup to charities. This is why the charities need to be extra careful of the way the current government is manipulating them, dangling this new money over their heads as motivation to begin behaving in the way the government wants them to.

The terms "Personal Responsibility" and "Personal Choice" were endlessly repeated by the governments of both Margaret Thatcher and John Major who oversaw the removal of monies paid to local authorities and charities and given directly to service users in order for them to exercise their personal responsibility and their personal choices. David Cameron also talks about personal responsibilities and choices quite a lot. In fact, both Thatcher and Cameron have used this terminology to declare the concept of "Society" obsolete, redundant or non-existent. In the context of what is being written about here there appears to be a massive ideological dissonance.

The reasons given by both Mr or Miss "Unattributed" and the ultra-right wing Westminster Local Authority to justify the removal of choice from the approximately 76 people who choose to continue living on the streets of Westminster is that society knows better then they do what is good for them.

That dissonance leads to remarks that would be laughable if they were not so abusive and potentially dangerous. Remarks like this quoted by Jason Beattie in the Daily Mirror:

“Conservative Westminster council in Central London also wants to make it an offence to sleep rough – while slashing £5million of funding to hostels. Astonishingly, town hall chiefs claimed soup kitchens only “encourage” people to sleep on the streets.”

That same piece of obscene nonsense is repeated by Unattributed of the Daily Mail in support of the actions of Westminster Council.

“Daniel Astaire, Westminster Council's cabinet member for society, families and adult services, responded by saying: 'Soup runs have no place in the 21st century and it is wrong and undignified that people are being fed on the streets. Handing out free food only serves to keep people on the streets for longer, damaging their health.'”

Unattributed precedes that little gem with this:

“'If approved, the by-law could be in place by October,' the spokesman added. 'Vulnerable individuals will not be enforced against, and all individuals will be asked to leave the area before being subjected to any enforcement.'”

In nearly 30 years of reading misleading documents prepared by National or Regional Government, District and Town Councils, Hospital Managers and Primary Care Trusts, and local football or youth club committees: I have never read such a deliberately ambiguous statement. I have been reading it on and off for over 24 hours and I still cannot make sense of it. It would have been more honest if "The Spokesman" had said: "We will ask them to leave and if they don't go we will make them".

Before closing I will repeat a few quotations from Jason Beattie's article in the Daily Mirror which, although I presume they were available to "Unattributed" of the Daily Mail, were not included in his or her article.

“Westminster council, one of the richest in the land, wants to bring in a bylaw making it an offence to “give out food for free”, punishable by fines. The twisted move blows apart David Cameron’s Big Society boast that an army of ¬volunteers will flock to help those worse off.”

“And it sparked a storm of ¬criticism. Reverend Alison Tomlin of the Methodist church in ¬Westminster said: “The proposals are nothing short of disgusting. This bylaw punishes people solely for their misfortune and belongs in a -Victorian statute book, not the 21st century.””

“Labour’s London mayoral ¬candidate Ken Livingstone added: “Only the Conservatives would try to make it illegal to give food to the homeless. With Tory mayor Boris Johnson cutting affordable housing to a trickle, the number of people sleeping on the streets is rising and cuts to housing benefit threaten ¬thousands more with eviction and homelessness.””

“Councillor Paul Dimoldenberg, leader of the Labour Group, said: “Nothing illustrates the cold-hearted and callous approach of the Conservatives than this attempt to criminalise those offering help to ¬homeless people.

“I thought this was what the Big Society was supposed to be all about, generous-hearted people giving their time to those less fortunate, at no cost to the public purse. This is a nasty, mean move from a nasty, mean party.””

So, what do you think? Are the homeless charities Broadway, St Mungo’s Homeless Charity, and Thames Reach Homelessness Organisation, “working 4” their target group of vulnerable people or are they “doing 2” them? Are they forgetting who it is they exist to represent and becoming self-serving instead?

I believe they have lost sight of their purpose and are guilty of negatively “doing 2” their clients. I also believe that as potential beneficiaries from another Draconian change proposed by the coalition government i.e. the changes to Disability Living Allowance, that it is highly unlikely that these charities have been able to remain totally objective in their dealings with their paymasters, Westminster Council.

During what is a very anxious and frightening time for us “vulnerables” Scope remains the only major charity which is consistently challenging the Government on our behalf while The Green Party and Plaid Cymru are the only major political parties who are publicly declaring their support for our causes.

I expect the three Charities named above 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 have been used in an attempt to convince the public that the abuse of the vulnerable, abuse of “US”, is right.

In conclusion: I have been discussing matters 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 “vulnerables” expect of those individuals and organisations who purport to represent us in our absence is that they would publicise and draw public attention to this disenfranchisement: not collude with it.

1 http://www.communitycare.co.uk/Articles/2009/12/21/113458/how-the-2012-olympics-will-help-end-rough-sleeping.htm

2 http://www.dailymail.co.uk/news/article-1361198/Callous-council-wants-ban-soup-kitchens-homeless.html

3 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/

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.

Challenging Mental Health Stigma & Discrimination

Inspired by the current stereotyping and bullying of those with Psychiatric Illness by the British Media.

Written as part of theBrokenOfBritain Blogswarm "One Month Before Heartbreak" which can be found at
http://onemonthbeforeheartbreak.blogspot.com/2011/02/challenging-mental-health-stigma-and.html

A few days ago I cried.
The uninitiated might be thinking: "So what! He's one of those miserable depressives": but: "miserable depressives" is just one of the stereotypical pigeonholes that writers, journalists, and others, have tried to fit us into throughout time. I am capable of crying for England of course, when the dark extremes of my depression visit and I sit, guilt ridden, remembering every foolish thing I have done (and over 60 years that's quite a lot). At such times I also remember every "special" person the "mad" me has hurt and driven away, and then I can cry uncontrollably for days. In response to someone saying "can I help", "what's wrong", even "I love you", rivers of tears, flowing over my cheeks and mixing with the endless lava flow of snot the comes from who knows where at times like this.
This though was a different sort of crying, it was "Normal" crying. The sort proper human beings do, some at the drop of a hat, as a reaction to things both happy and sad. For me that luxury is restricted to certain times, like that bit at the end of The Railway Children when Jenny Agutter says: "Daddy! My Daddy" or when ET says "I'll be right here", or in "Armageddon" when "I don't want to miss a thing" begins to play. (God, I'm almost emotional just thinking about it - now that is almost "Normal"). Truth is, there are times when I would love to have a good cry, if only to give my sinuses a good clear out, but it doesn't work like that for me. Like many depressives, over time, I have become so skilful at not betraying my in a mood by crying in public that my tears have almost become detached from my emotions and have become attached to my thinking instead.
The "normal", spontaneous tears I cried this week flowed after a dear friend I have made on Twitter responded to my request to know why many of the people with physical and psychiatric disabilities on Twitter use the term "Spoons" to describe their energy levels. I'd sort of figured out that "I'm running out of spoons" meant running out of energy and that "lots of spoons" meant having plenty of energy but I was wondering where the term had come from.

My friend directed me to an Internet site where, with that clear white light that comes from understanding growing ever brighter, I read the brilliant "Spoons Theory" of Christine Miserandino. The tears were a mixture of happy and sad. They came because I was learning the vocabulary of disability and at last I had been given an alternative to saying "not too bad" when others inquired about my state of health. Questions which are easy enough to answer when body and mind are well, but requiring such a complex answer when they are not that it's not worth trying to give one. You know the times I'm talking about here, those times when, at best the listener will become emotional, over concerned, or unnecessarily pitying of circumstances that are just everyday life for us: and at worst: will become expressionless, eyes glazing over, as they search for a mental escape from what I am saying while attempting to retain an "I'm really interested" attitude. Don't know about you but I intensely dislike it when people react to my everyday life as if it is something horrendous, I quite like it most of the time.
Christine Miserandino's theory really resonated with me on more than an emotional level. In sociological terms I am something of a "Symbolic Interactionist" as was my sociology "hero" Erving Goffman. Goffman saw language as a crucial factor in the way society functions. His work laid the bedrock of "Stigma" and "Labelling" theory. In his 1960 work "Asylums" he identified the ways in which language is used by social groups to exclude those they do not wish to become group members. After observing what went on in a psychiatric hospital he identified the ways in which both the "Staff Group" and the "Patient Group" used vocabulary to exclude the other while there was a universal language used by both when it was in the mutual interest of both to interact in a meaningful way.

Discrimination is heavily reliant on language for its survival. The easiest way to discriminate is of course to just walk away when an unwanted person or group come near, but when this is not possible, or when the discriminators want to retain possession of their territory, it is words to which they turn to make their point. This trick is learned very early in life, in the school playground, or, if parents use the language of discrimination in the home, even sooner.
Bullying is discrimination in its most violent vocal form, especially the very subtle bullying where children exclude one of their number by talking about things the unwanted has no knowledge of. Most of us will have experienced this at some point during our childhood and we all know that it is much harder to deal with than the overt discrimination of name-calling as it is almost impossible to prove that it is being done to intentionally hurt. Hence, the more sensitive child begins to believe that they are being excluded because there is something wrong with them and the embryo of an adult with self-image problems begins to grow while the seeds of some forms of mental and psychological illness are sown.

My sisters and I endured quite a lot of name-calling. Living in poverty after my father left when I was two and a half, we were clothed mainly in hand-me-downs from older cousins, in second-hand clothes provided by charities or, worst of all, purchased at a local jumble sale. In the latter case it was always possible that the previous owner of these clothes was a classmate.
Bullying based on our ethnicity came later. Many people cite the "Rivers of Blood" speech by Enoch Powell in 1968 as the legitimisation of racial discrimination in this country but the opinions of Mr Powell affected us before that.
It was as a junior minister in 1955 that he first sowed the seeds of discontent regarding the number of immigrants coming to this country in a Parliamentary speech. In 1962 he was the Health Minister when the Thalidomide scandal occurred. Thalidomide was a drug commonly prescribed to women suffering extreme morning sickness during pregnancy. As a result many of the women gave birth to children with missing limbs. During the media clamour for compensation Powell refused to meet the children claiming that the mothers were responsible, saying "anyone who takes so much as an aspirin" during pregnancy is, in his opinion, putting their unborn child at risk.Not a nice man.
It was a speech he made during the 1964 general election campaign that affected my sisters and me. In this speech he claimed for the first time that the numbers of immigrants in the United Kingdom would lead to problems "for us and our children". Interviewed by Norman Fowler of The Times his reply to one question was that Immigration was the biggest issue at that election. The Times never printed Fowler's article. Powell was the only one talking like that at the time and the paper felt he was out of touch.
But that 1964 speech laid the foundations of the bonfire that Powell ignited in 1968. For my sisters and I are life changed in 64 as people who had previously been genuinely inquisitive about the fact that our mother had been born in India began to distance themselves from us and make derogatory remarks in our presence about "Immigrants".
Our Mum's response to our tears over this was to say "call them names back": not easy that: not when you're a child, not when responding in that way might alienate further the bullies whose acceptance you are desperate for.

Many comedians say that they became "funny" in the playground where they used humour to gain acceptance into groups that previously did not want them. I developed a strategy where I anticipated the attack of bullies and, humorously, took the words out of their mouths by using their ammunition in a humorous, self-deprecating way that made any attack by them pointless. This stood me in good stead when, in my early twenties, I first experienced discrimination, name-calling, and mockery because of my mental illness. The television programme "Shoestring", (who’s central character was a private detective who had suffered a nervous breakdown) was very popular at the time and one work colleague in particular derived great pleasure from shouting "Here comes Shoestring" whenever I approached. I would turn the embarrassed laughter of our other colleagues into genuine belly laughs by responding in character, with something Eddie Shoestring had said in the most recent programme.
I didn't really see this as discrimination at the time, (in my mind "real" discrimination was what was happening to black people in the southern states of the USA and in South Africa). I turned that around and viewed it as someone trying to cope with his own embarrassment at my presence but I gradually realised that this is exactly how most discrimination takes root, by reducing a person to a stereotype.

I guess I first took a political view of discrimination 15 years later when, after years of voluntary work and move to "unqualified" full-time Social Work, I was introduced to the work of Erving Goffman while at university studying for my Social Work qualification. By then I had witnessed, and supported where I could, the civil rights battles of Black and Asian people and Women in the UK. The Gay Rights movement was just gaining pace.
My view now is that the major tool in breaking down discrimination based on illness and disability is that minority groups, like us loonies, need to reclaim the vocabulary of the ignorant in the way movements such as the Gay Movement and the Anti-racism movements did in the past.
I believe that by talking the language of mental illness discrimination and stereotyping (such as nut-case, loony, round the bend etc) and using these as terms of endearment or humour between ourselves, we reduce the hurt and the sting when they come from "outside", thus disarming a major weapon of the bullies, the Ignorant, and, (sadly), the charities who purport to represent us but who patronise us by wanting us to present an "acceptable face" of Mental Illness to a public that can not be bothered to understand us. Even worse, in the case of the latter, presenting an "acceptable public face" can determine the level of help we receive.

Stepping aside from mental illness for a moment, with the coming of the Social Model of Disability, a term first coined by disabled academic Mike Oliver in 1983, came increasing realisation that charities served best those who fitted neatly into the stereotype-based pigeonholes the charities themselves had constructed. The major determinant in deciding eligibility was that the disabled person, or, in the case of children, their parents, adopted the stance of grateful victim. Charities socialised those they purported to help into a culture where everyone was "grateful for small mercies" and never questioned why there was not more. Those who needed help from the charities soon learned that rocking the boat would lead to problems for them or those in their care which, at worst, could result in denial of service.

The fact is that, in common with those with physical disability and learning difficulties, we loonies did not become disenfranchised until the coming of the Industrial Revolution. Before that time we would have been found a useful role (in line with our abilities) within the family production unit. This can still be seen in countries like Greece and Turkey where, on one occasion I witnessed a young man with no legs using his hands to propel his carriage trolley from business to business carrying messages between them, and another who was clearly conversing with beings the rest of us could not see while he collected deck chairs. Here at home, one of the reasons that I choose to shop at the supermarket I use is because at times the whole environment is overwhelmed by the gleeful high pitched singing in recognition of a familiar face by a shelf stacker come odd-job who clearly spends the rest of his time in a parallel world to this one.
There have been cultures where the psychotic were revered as visionaries, and those with less visible mental illnesses or psychological disorders were regarded as "sensitives", in touch with both previous and future cultures as well as the one in which they live. Mental illness was once not the problem that society claims it is today.

I guess I became "mentally ill" on the day in my teens when my childhood thought that "I wish I was dead" became - with the realisation that my fate was in my own hands - "I'm going to kill myself".
Back then in the early 1960's and living in rural Oxfordshire my knowledge of mental illness was based on the "myths" which abounded about three huge Gothic Hospitals, all built some distance from the homes of the "normal" majority. Those who were "sent" to the hospitals were rarely ever seen again. Those who did return were invariably "changed", life's glitter and spark extinguished by the "chemical cosh" or by the electric shock treatment that adults spoke of in whispers, leaving my childhood imagination to fantasise about people being wired up to a machine similar to Frankenstein’s.
The deadened eyes and slow speech of those who had experienced this treatment did nothing to counter that vision. One clear example was provided by the Aunt of my best friend. She spent all of the 1950's incarcerated with the male created, female only, psychiatric condition known as "low moral fibre". Basically she had given birth to a child before she was married.
Witnessing her immunity to any form of happiness or stimulation, the way she welcomed success or failure with the same blank expression, ensured I never told a soul as my teenage advancement brought awareness that, at times, I saw things others did not see and heard things others did not hear. I became aware that my thoughts were often different to those of my peers, a major example being the way they reacted with fear or horror to any mention of death, especially suicide, a concept with which I was very comfortable as I spent some time with those thoughts daily.

While I was single I was able to conceal my depression as long as I gave it an occasional voice through the hidden poetry I would write from my darkest places.
I made a deal with myself when I was 18 that I would never marry or have children who might "turn out like me". However, love turned out to be a more powerful psychosis than my own and, when my depressive cycle came round during the seventies; I had to seek medical intervention as the illness was impacting on my wife and children. (Because of the potential side-effects of the drugs I was taking I had to tell my employer "in confidence" about my illness. Hence the Shoestring comparison and whispering huddles and giggles when I approached some of my work colleagues).
Following the break up of my family (now there's a familiar mental illness tale) in the mid eighties I plunged to previously unexperienced depths of depression as “reactive depression” to my loss became entangled with my endemic “clinical depression” and I required "time out" in a therapeutic community. At that time it was necessary to make my mother and sisters, and my (by then different) workplace, aware of the illness (which I led them to believe was occurring for the first time).
As I recovered I became aware of the three distinct approaches towards me: there were those who spoke in whispers whenever I was close: those who hid their own lack of understanding behind callus, insensitive or offensive, "well meaning" humour: and those who felt the need to treat me, alternatively, as an invalid or as a child. What was clear was that everyone was so focused on my diagnosis that they had stopped seing "Me".

Because of those experiences I never attempted to return to the same "life" after either of my next two major breakdowns.
This had advantages; I obtained qualifications in both Social Work and Adult Education and had successful careers in both between relapses. I learned that answering the "Major Illnesses" question on application forms with the word Depression was a big mistake. I found that because of the range of my experience I would always be invited for interview if I wrote "will discuss at interview" in that space. At the interview I would claim, not dishonestly but not strictly accurate either, that I had suffered a major "emotional breakdown" following unfortunate family circumstances; at which point most interviewers would avoid eye contact and apologise for "dragging up" the past. Interestingly, and I suppose naturally, they could all identify with this concept whereas the mere mention of psychiatric illness led their thought processes to the stereotypical images of madness promoted by the media and that wonderful term; unstable.
My spinal injury had occurred and I was physically disabled by the time my teaching career ended with my longest depressive episode yet in 2005. At that time I no longer had the will or the energy to protect others from my illness so, with the help of my partner and the staff at the local psychiatric day hospital, I "Came Out" to my family and closest friends, revealing the full history of my breakdowns and the suicide attempts they had been unaware of.

The reason I have borrowed the term "coming out" from the Gay Community is that from that day I no longer fear the stigma, the insults or the patronising attitudes of society.
This is me, I am now officially a loony, so when (at 55) I grew the pony tail I've wanted to grow since I was 18, I just shrugged of the complaints and sarcastic remarks. "What do you expect, I am a nutcase". These days if I am not well enough to do something I tell the truth and seek whatever help, or, more often, the isolation, that I require.
No more excuses, no more lying to those I love, no more "putting a brave face on". Like the grand old Duke of York, “When I am up I am up, and when I am down I am down, and when I am only halfway up” etc.
Hence, my delight at being led to Christine Miserandino’s "Spoons Theory". I have since directed all of my nearest and dearest to the website and I expect them to understand why I will only give a one word answer, instead of having to repeat my entire medical history, whenever I am asked that "how are you today?" question.

The thing is, now I am an out and out Loony, happy as a pig in shit, it is the establishment, not the 'man or woman in the street' that discriminates against me. Two recent examples:-
1: When I sought legal advice recently to fight discrimination against me because of my physical disability, I was told by a legal charity formed specifically to deal with situations like the one I was involved in, that seeing the problem through might be "a waste of" my "time and energy". Nothing to do with my physical disability that so I think it's clear which of my incapacity's led to that comment.
2: You may have come to realise through this post that I now believe in facing negative labels and stereotypes head on. I wrote a poem entitled "I am a loony from the bin" (you will find it elsewhere on this blog), which I actually showed to people. It was praised by my colleagues, the social workers, and the psychiatric nurses at the day hospital. In it I take all the derogatory terms about mental health and turn them in on themselves. Reclaiming the language of Mental Health culture from the bullies in the way Anti-Racist movements and the Gay Community had done in the past.
With the encouragement of my supporters, I sent the poem on different occasions to two separate mental health charities who were requesting creative input from “service users”. Neither of them acknowledged receipt of the poem. I am left to wonder what might have happened if I had sent a wholesome, clichéd, poem or essay using the vocabulary of the victim, the vocabulary they themselves use to represent me in their advertisements.

I refuse to "suffer" from depression or from my physical disability. I have both, that is true, but I spend my life consumed by neither. There are some aspects of my personality which are loved by others that possibly would not be there were it not for the understanding of others I have had to undertake on my quest to understand myself. I refuse to see the day that I will require a wheelchair as the negative many others do. On that day I will no longer have to experience the pain that surges through my legs, buttocks, and lower back every time I stand. From that day I will no longer be the slowest thing on the pavement, having the backs of my legs and bruised by the shopping trolleys of others who are too ignorant to simply ask me to move aside. From that day a part of my imagination which I have had to lock away will be released. When I was a child I ran or cycled everywhere at top speed with the voices of David Coleman or Murray Walker providing commentary on my actions as I became the fastest thing in the world. On the day I first take my wheelchair onto the streets I will become Tanni Grey-Thompson, so watch out world.

But best of all, on that day, when I return from my excursions and I am asked "how was it"; where I might once have felt obliged to describe every screaming muscle, I will simply say, "no spoons" and, rightly, I will expect my communication to be understood.

Brokenbrian February 4, 2011.

You will find Christine Miserandino’s Spoon Theory here.