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.

"What happens to disabled people in the rain?"

A blog for the BrokenOfBritain blogstorm "One Month before Heartbreak"

I qualify for the Disability Living Allowance (DLA) upper rate mobility component because both of the specialists who have treated my disc disease have recommended avoidance of some physical movements. They have also said that I should avoid public transport because the motion of buses and trains and the fact that I cannot guarantee getting a seat when I board either of these, puts me at great risk of becoming paralysed from the waist down. Because I qualify for the DLA mobility component I also qualify for a (used to be orange) Blue Badge which permits me to park in the designated Blue Badge parking spaces in any car park.

Until about 2005 I rarely took up a blue badge space because these were fairly limited, for instance, in the Tesco I used to shop in at that time (you know the kind, one of those great big hypermarkets where they sell everything and anything) there were comparatively few designated blue badge spaces in the entire car park even though it was designed to hold over 1000 cars. The few blue badge spaces there were dotted around the car park, and I felt that I should leave these for users, of wheelchairs and other mobility aids, who need the extra space around the parking bay to get in and out of the car. Getting in and out of the car is a problem for me too because if I do not have enough room to fully open my door the twisting etc that is required to get in or out of the car is as potentially dangerous for me as standing in a swaying bus or train. One thing I could do, that would not be as easy for users of mobility aids to do, was to park on the end of a row ensuring that my door faced away from the car parked alongside that bay, that way I could ensure that even if the occupants of the next bay changed while I was in the store my access on returning would still be clear.

And then, one day in 2005 or 2006, something strange happened. I can't remember the date but it was a fairly phenomenal week for those of us in my area with mobility problems because under pressure to implement the changes required by the Disability Discrimination Act, Tesco increased the number of designated blue badge parking bays in their car parks. From there being no more than six bays scattered around a vast car park there were now four rows of eight bays, right opposite the entrance to the store and each facing an identical row of bays dedicated to mothers with babies. What's strange about that? Nothing really, what was strange was that on that day, for the first time in that car park, I parked in a designated blue badge bay and, as I walked to the entrance of the store I was aware of several hostile glances in my direction. As someone who lives with depression it is important I retain an awareness of my propensity to paranoia so, I sort of shrugged those looks off, put it down to it being one of my bad days, and because of that I tried to take no notice of the similar hostile looks I sort of believed I was getting when I returned to my car.

I usually shopped at that Tesco on weekdays when, because weekend shoppers tended to travel to it from miles around, the car park was much quieter. In fact, the 32 designated blue badge bays were rarely if ever all taken. This didn't mean they weren't utilised, many was the time when, on just arriving or just returning to my car, I would see some solo woman with a "baby on board" sign in the back of her car slowly cruise along the lines of mother and baby spaces (which were invariably all taken) and then, assuming a "you can't see me because I've drawn my head back into my shoulders" pose, drive around the end of the row and in one motion swing into one of the vacant blue badge spaces. This didn't really surprise me, sisterhood in the area I live is clearly not very well developed and I knew that many of the mother and baby car bays had been occupied by women alone who, seemingly without remorse, parked in one of those bays before rushing into the shop as if her backside was on fire. Those women would, if I was in my car when they returned and they realised I was watching them, adopt an aggressive stance which said "what are you going to do about it" before lowering themselves into the vehicle. The women (and sometimes, but not often, men) who stole the designated blue badge parking bays reacted differently. If they saw me looking, realising that imitating Quasimodo did not make them invisible, most, on disembarking from their vehicle would give me one of those "what's a person supposed to do" looks and shrug their shoulders before sheepishly walking into the supermarket. As I am 6'3" (when I am able to stand up straight), and that that time I weighed about 15 stone, I did not feel it would be appropriate to challenge these bay stealers directly, there have been times in the past when me being assertive had been interpreted as me being aggressive.

Where is the rain? I hear you ask, don't worry it will be along soon, there's always rain out there somewhere.

And so it went on for many months. Whenever I parked in that car park it seemed to me, judging from some of the looks cast in my direction, that I had done something wrong which had upset the local residents. This was especially confusing on days when some visibly able-bodied woman, who might or might not have given birth any time during the previous 10 years, would get out of her car which she had parked in one of the designated blue bays yet she did not seem to attract the same hostile attention that I, the one with the blue badge, did.

Things seemed to get worse when, for practical reasons, I began doing my shopping at a different branch of Tesco. I was still working when, to improve my rush-hour route to work, I moved to the opposite side of town. At that time, with further degeneration of my spine as yet not diagnosed, I could not sit in the car for more than about 30 minutes and my new location meant I could be at work in 20. My new branch of Tesco was even closer. It is much smaller than the first, not one of those really diddy ones where they sell everything at an extortionate price to justify the "special offers" in the larger stores, but somewhere in between those and the type of hypermarket I had shopped at in the past. This Tesco was also 24-hour service, a real bonus for someone who cannot "mix it" on equal terms with hordes of weekend shoppers. It is right on the edge of Heathrow Airport and much of its trade comes from the thousands who work there or on one of the several industrial estates that surround it, and, surprisingly, in a car park a quarter of the size of the one at the hypermarket, there are an inordinate number of designated blue badge parking bays. In fact there are more than at the hypermarket and here, with the mother and baby bays located in a different area, it is men who sometimes aggressively drive into the protected bays, I assume in a hurry because they rarely park in straight-line, and rush into the store, (without displaying a blue badge), also as if their backsides are on fire, but without a backward glance because they arrogantly assume they have a perfect right to do whatever they want.

I also noticed that the hostile glances in my direction increased when I began shopping at this store. Here though I noticed that the "able-bodied" shoppers who stole the bays also received hostile looks from others in the car park.

Now I became a humanist in the 1970s. You may remember it, Unconditional Positive Regard, Congruence, which meant always being true to yourself, and, Concreteness, which meant always being true to others. And so it was that I forgave those who fired invisible daggers into my back every time I walked into the supermarket, telling myself they must be having a bad day or something of that ilk. It was several weeks before I realised what the problem was.

The universal symbol for blue badge parking spaces is a diagram of a person in a wheelchair. Now, many people, our current, temporary, unelected prime minister included, believe that if they cannot see evidence of your disability, then you are not disabled. Implicit in the disability discrimination act, and the Social Inclusion policies that followed it, was a message to the disabled that they need not feel invisible any more. We should, in fact we were encouraged to, become more visible and claim our rightful place in the world. Problem was that until we became more visible no-one realised how many of us there are. The other problem was, just like other beneficiaries of Anti-Discriminatory legislation, we stopped being individuals to be pitied by some: no, to many: and we became one of the “Politically Correct” groups. Those individuals loathe and despise us, because in their view we receive favours that they do not. They don’t see us achieving equality, they see us taking something (in this case a parking space 10 yards from the one they now have to use), from them.

My penny dropped, because these people saw me walk from my car into the supermarket, even though my blue badge was clearly visible in my windscreen, and they do not believe I am disabled. This despite the facts that when I pull up anywhere I have to sit for several minutes, (I admit that they cannot see me wiggling my feet until the circulation returns and my feet belong to me again), and when I walk, depending where the pain is most extreme, I alternately waddle like Donald Duck, resemble John Wayne just after he has got off of his horse, or, to be crude about it, I walk as if I have shit myself.

And so, I have resolved the problem of the hostile looks, I still don't use my walking stick, no point when I am about to have the ideal walking frame in the form of a shopping trolley, and I wait for the day that someone confronts me so that I can embarrass them with the truth.

There is still one thing that puzzles me however. There are so many designated blue badge parking bays at this Tesco that they are rarely all full. Because much of the custom at the store is from those previously mentioned industrial estates this is also the case at the weekend when trade, at times, appears to be even less than during the week. But there are times when for some unaccountable reason, with plenty of vacant spaces all over the car park the designated blue badge parking bays, conveniently placed near to and opposite the entrance to the store, are full. So full that I often have to revert to my old practice and find a space on the end of a row, not that this is difficult because apart from those designated blue badge parking bays the car park is sometimes almost empty. This strange phenomenon only seems to occur when it is raining.

I am relatively new to disability culture so that puzzle remains to be solved. Can anyone tell me? Why is it only at those times that the designated blue badge parking bays are full up? Whatever happens to disabled people in the rain?

brokenbrian January 2011.



Poems before heartbreak

This is my day 2 blog for BrokenOfBritain’s “One Month Before Heartbreak” Blogswarm.

None of these poems are new; they were either written or updated during the year noted at the bottom of each one.

I have selected them because each one illustrates some facet of my life with depression or my more recently acquired Disc Disease. I hope they will help others recognise why it is a futile and unfair exercise to reduce the lives of disabled persons to one line “descriptors” for assessment purposes.

As a lifelong depressive I was surprised when, while attending a psychiatric day hospital throughout 2005, I was informed that some of the repetitive thoughts that followed me everywhere were caused, not by my depression, but by a form of OCD.

As you will discover, none of my ailments is straightforward, and my OCD is no exception as it manifests itself through mind sapping repetitive thoughts and not through the physically exhausting repetitive actions which are usually linked to the condition. Many of the friends I made during that year did live lives encumbered with the observable version of the condition and I wrote this for, and about, one of them

Eau de Toilet

My friend wears her obsession

No, not the one by Calvin Klein,

Hers comes from the Spaniard, Dom Estos,

And smells “Original”? or “Pine”.

Every time she walks into a room

Ninety Nine percent of bacterians leave

While one percent just get the hump

When she rolls back her sleeves.

From banks of cushions on her sofa

She stares way out to see

The tiniest speck or crumb of dust

An atoll missed by you or me

She fights them with her bleaches

And just when I think she’s done

Her dust busting mini vac roars at her hip

Her battle is never won.

She splashes it all over

She’d sterilise the world

If it would only stand still long enough

Her duster waits unfurled

To the dirt and grime of living

Strong messages she sends

She now has something “six times strength”

To help her round the bend

My friend wears her obsession

No, not the one by Calvin Klein,

Her eau de toilet is reminiscent

Of hospital corridors, past times

Some might think she’s rather strange

I just think she’s free

And I feel very privileged

That my obsessed friend loves me.

© Bri 2006

Most of my (in my opinion) most desperate, navel gazing, “depression” poems were written between the ages of 11 and 20. Those poems, and my ability to operate on automatic pilot, got me by as I sought to avoid Psychiatric Medicine and the “electric cosh”, ECT, which was being used to “treat” all sorts of psychiatric conditions at that time. By the time this was written I was 27 and married with a 2 year old son and one newborn daughter.

The “Little Yellow Pill” was Vallium, prescribed by my GP who I had finally told about the depression because I was in a deep depression that I was unable to escape from utilising my usual strategies, and which was beginning to impact negatively on my family. The “yellow and black capsule” was an anti-depressant: I can’t remember what it was called but it was one of what were known as “tri-cyclic” anti-depressants. These were fairly new drugs at the time and one side-effect of them was to detach my mind from the day-to-day world even further than the depression did. I wrote this on the day I realised I had become addicted to the Valium, which had been prescribed to nullify some of the side-effects of the anti-depressants.

Little Yellow Pill 1977

My life is a little yellow pill

Taken three times a day

with a glass of whatever is handy at the time.

My world is oval

A yellow and Black capsule

Taken at bedtime with a cup of warm cocoa

My thoughts are confused

Tossed this way and that

Bouncing endlessly and noisily from the walls of my aching skull.

Like a solitary grain of sand on a pebble shore.

My body is an island

Cut off from the world

By oceans of fear that break relentlessly upon my shore

Eroding my yesterdays and drowning my tomorrows.

My life is a little yellow pill

And the bottle is nearly empty.

© Bri 1977/2005

At the Day Hospital we were asked to do something creative for public display on World Mental Health Day. I had not long learned that I was now considered to have “bi-polar disorder”. Undiagnosed till then because I am never as manic as most during the time before the depression closes in, and my time in that “manic” phase is relatively short, damaging just me and my relationships.

This is one of a pair I wrote for World Mental Health Day. The other is possibly too negative to put here where I cannot know who will read it. Written to illustrate the light and shade of living with depression, this is the light.

In Good Company.

I am a loony from the bin

Society puts its rejects in.

You’ve read about me in the Sun or Mail,

Where the headline without fail,

Will warn you that you might get stabbed,

Or even have your children grabbed,

By me, or others of my kind,

Who you will inevitably find,

Asleep in doorways, scrounging money,

To spend on booze or dogs with runny

eyes, that we appear to keep,

Rendering our poverty obsolete,

They’d rather us you did not see,

My other loony friends and me

They claim the life we live we choose

Our smelly clothes, our worn out shoes

Our confused speech, our confused minds

Fuelled by drugs we somehow find

Regardless of our lack of dosh

We’d clearly rather “trip” than nosh.

Winston Churchill, Lady Di

Hans Christian Andersen, and Charles Ives

Spencer Tracy, Kurt Cobain

Michelangelo and Mark Twain,

John Lennon, Vincent Van Gogh

Gustav Holst, Rachmaninoff,

Tennessee Williams, Graham Greene,

All people you might not have seen

If judged on their illness alone

By the editor of some tabloid tome.

I am a funny from the farm

I promise I won’t do you harm

Some of us might, that is true

But statistically so might more of you

I’ve never robbed, I’ve never killed

Believe me, I am much too ill

Like many from the funny farm

It’s me, not you, who I might harm

And during times when I am well

You would not know, you could not tell

I’ve raised my children, stayed in work

Social responsibility I’ve not shirked

I work hard to avoid that bin

Society puts its rejects in

But this illness descends without warning

Fine at bedtime, nuts in the morning

If we frighten you, then you should see

Just how scared we are, my friends and me

And if at times we slur our speech

It’s drugs from the medics, not drugs from the streets.

Mary Shelley and John Keats

Virginia Woolf, Louis MacNiece

Ernest Hemmingway, Henrik Ibsen

Marilyn Monroe, Ralph Waldo Emerson,

Charlie Parker, Anton Bruckner,

Sylvia Plath and Edward Elgar

F. Scott Fitzgerald, Henry James,

All these and many other names,

Might not be known to you and me

If their madness alone the world did see.

I am a nut without a case

You’d never know it from my face

I’ve trained my countenance to hide

The torment raging deep inside

If I seem ignorant when you ask

Please realise that the simplest task

Can seem immense at times like these

I’m standing, but I’m on my knees

It’s not your pity that I seek

Just understanding that this week

I might not be the man you know

I’ve lost me too, and now I’m so

Confused, bewildered, “off my head”

Contemplating being dead

The internal argument ensues

Could the loss of me be the making of you

While all that I ever achieved

Crumbles to nothing at times like these

And deep inside I’m forced to face

The truth. - I’m a nut without a case.

Charles Dickens, John Bunyan and George Fredrick Handel

Audrey Hepburn, Judy Garland and Gerard de Nerval,

Rossini, Tchaikovsky, Edgar Alan Poe,

Spike Milligan, Cole Porter and Victor Hugo

T.S Eliot, Brian Wilson, and Alfred Lord Tennyson

Charlie Mingus, Lord Byron and Emily Dickinson

Noel Coward, Samuel Johnson, and Monticelli

All shared the illness with people like me,

This world would be a less cultured place

If they’d hounded these humans out of the race.

I’m round the bend, I’m up the creek

Without a paddle in a boat that leaks.

A political pawn who lives with social rejection

Until the next general election

When headlines scream that folks like me

Are never safe, should not be free,

And if you weaken, are not sure

They’ll ask if you want us living next door

They’ll jumble several diagnosis

To arrive at a Jekyll and Hyde prognosis

To fuel the fear in folks like you

That you can never tell what we might do

You’ll have to search very hard to find

That Schizophrenia just means “confused mind”

That those with the fictional “split personality”

Are folks with depression, people like me

But the “split” in us is not “good” or “bad”

It is loss of control of what’s happy or sad

It means loss of our jobs, children, husbands and wives

It means loss of the love that we once had for life.

I am a loony from the bin

that society puts its rejects in.

Like many from the funny farm

It’s me, not you, who I might harm,

It’s not your pity that I seek,

Just understanding that this week

I might not be the man you know. . . . . . . but I’m in good company.

(c)  Bri 2005 (with “names” from www.mixednuts.net).

 

I think you will have gleaned by now that living with depression is littered with loss. Loss of self, loss of jobs, loss of friends, and, possibly worse of all, loss of significant relationships. It took me 6 years to recover from the loss of this one and to write this as a sort of therapy. The names have been changed etc. Etc.

Becky and Tom.

On days like these I miss you more

Than last month,

Last year,

The year before.

On days like these I speak to you,

Through all I think,

Or pray,

Or do.

On days like these I feel the pain,

Of yesterdays

Fresh

Once again.

On days like these I search to find

Your look

Your smell

From back of mind

On days like these I long to hear

Your voice

Emerging

Through my tears.

And how are Becky and Tom?

© Bri 2001.

So, we move on from the isolation of mental illness to the isolation of physical incapacity. I was 48 in 1998 when I learned that the excruciating pain in my buttocks and legs that had rendered me immobile was Degenerative Disc Disease. I was told my back was as worn as that of an 80 year old, and that the available surgical treatment would remove my mobility completely. Basically, the discs at the base of my spine are bursting and arthritis is moving in and compressing my spinal cord and some pretty important nerves.

Once I lose the use of my legs completely they will perform the operation, nothing to lose then, lol.

My condition is partially relieved by steroid injections and top of the range pain-killers but the pain is never completely supressed. Two discs were gone at the time of that first scan, a third went in 2004 and another in 2006, since then my mobility has declined so much that I became overweight and became diabetic. Anyway, that third occurrence led to more lifestyle changes than the others, the poem below describes an event at that time.

Freedom

With the freedom of a child re-grown

Today I took a bath alone

Free from fear, without a care

Into the tub with no-one there

I even reached my distant feet

With the help of my new plastic seat

And with waste still running to the drain

I filled it up and went again.

The plastic seat rides up and down

(Not far enough for me to drown)

So I no longer need to shout

For help to come and get me out

No more floundering like a big beached Whale

I’m told my plastic seat can’t fail

It will refuse to take me down

If it can’t get me up again.

I have forgotten, just can’t tell

The last time that I felt this well

A time to reclaim some of the cost

To happiness when skills are lost

Freedom to choose when to lie and soak

With fags, the radio, Southern Comfort and Coke

To choose such moments on a whim

Without needing to bring my loved ones in.

No more wondering how I smell

I’ve not bathed, can others tell?

No more planning what to cook, specially fry

So the smell doesn’t linger on me for days

No more need to stand in the rain

So I’ll feel properly clean again

And no more odour of sweaty feet

I think I’ll like my plastic seat.

Sometimes I’d think back and I’d laugh

At the child who so resisted baths

Oh Brian if you’d only known

What awaited you once you had grown

But I’d think these thoughts with no regret

I’d rather remember and feel, than hide and forget

And with my plastic ride I’ll have such fun

Disability Nil, Brian One.

© Bri 2006

The copyright symbol denotes that I am the owner of this work. That said, I think all of these have been utilised by one teacher/trainer or another at some time. As they are mirrors on my life I like to control who has them. If you think any of these would help you or someone you know please contact me, you will not be refused.

brokenbrian2011

A heartfelt contribution to: One Month Before Heartbreak: A Broken of Britain Blogswarm

Today I feel quite anxious, almost afraid.

I have lots of reasons to feel this way. My son, my daughter and her partner might all lose their jobs in the current recession. My two granddaughters aged 10 and 8 are daily fed images of the female form airbrushed, enhanced by plastic surgery, and Botoxed, while being told that if they do not grow up to look "this way" they will not be accepted by their peers, or by society at large. I watch the son of a close friend struggling to pay off a 10-year-old student loan while the son of my niece has just begun university and is about to accrue an even bigger debt.

But I live with these thoughts every day without the physical symptoms of anxiety so what is it about today that is causing the headache and the gastric churning.

Well: it's this: Just this. These words appearing on my monitor while I talk to myself. But here again, I write for a part of almost every day. Poetry, blogs, Twitter, Facebook, I've even started to write a book about my love of music, so why, today, is this very familiar and natural act causing a physical backlash?

I'll try to explain.

I am writing these words today because many of us, concerned at the way the coalition government is bullying, victimising, stereotyping, abandoning and, stigmatising those of us who live with disability, have decided to publish blogs almost simultaneously to draw attention to these injustices being perpetrated in your name. As someone who feels it is important not to write things that cannot be corroborated I have been doing some research just in case (although I was fairly certain of my original opinion) I had misunderstood what I have been hearing and reading.

The results of this research are quite upsetting. I discover that none of the three major political parties are prepared to support us in combating ill-conceived legislation that will affect every member of the disabled community. I have discovered that major charities, who have taken our money and yours claiming it would be used for our benefit, have been colluding with the government and have assisted them in stereotyping and stigmatising the disabled of this country by labelling them as benefit scrounging thieves. No dissent from any major public figure on our behalf. Ex-politicians like John Prescott and David Milliband, seem to re-tweet on Twitter almost any request to do so, regardless of the dubious origins of some of the tweets, yet they do not acknowledge requests from the disabled community to support it. We have, to all intent and purpose, been politically disenfranchised.

Now that all makes me angry, not afraid, bloody angry: so what is this anxiety about?

I'll try and explain. As I began to write this I realised that without the support of the media in this country; without the support of the politicians (both past and present) of this country; without the support of the charities who have taken your money and mine under the false pretence that it would be used for our benefit; and without the support of the public who have been fed lies and misinformation by all of those named above: I, and all of my colleagues, could be "at risk" simply for writing these words.

That sounds ridiculous doesn't it? As if I'm describing the extreme violation of human rights once prevalent in Communist Russia and now prevalent in other countries. But it is here, and it's will work like this.

The plans to brand disabled persons as workshy include an assessment of our capabilities. That sounds reasonable doesn't it, but this assessment will be carried out by a private company and will take no account whatsoever of the reasons why medical professionals consider us to be unfit for work, or, of any change in our circumstances since that assessment was first made. The assessment will be based on a number of "descriptors". That is, aspects of illness, impairment, or disability that have been reduced to a single line of description. These “descriptors” are deemed to be the same for every person who receives additional benefit to enable them to live more enriched lives regardless of their disability.

"Okay" you say, but what's that got to do with your ability to write this?

Well, I could understand it if, at first glance, anybody, even you, might say that if I am able to write these words then I must be perfectly able to sit in an office and use a word processor. Understandable, yes. Except, in my case, while you are reading this, you cannot see the headset I wear to enable dictation directly into my computer. I need to do this today because my arms feel extremely heavy and painful so typing, today, would not be possible. Headset aside, you have not been able to see the number of times I have needed to alter my position while doing this. At the moment I am leaning backwards so that my whole body is at an angle to the floor. When I began I was leaning forwards. I've not needed to during this exercise, but at some point of everyday I will need to lay on the floor for a while. On occasions I need to adopt the only position which offers me relief from the most extreme pain, that means laying on the floor with my bum against the sofa and my feet on the seat of the sofa in a Z shape. I'm not sure how many offices could accommodate my needs in this respect.

Another descriptor refers to the ability to concentrate. "Well surely you have just demonstrated that you are able to do that". I hear you think, and am not surprised, because I often say that to myself.

The truth is though that for a number of reasons, although I can do this today, it might not be possible tomorrow and it might not have been possible yesterday. It also might not have been possible earlier today and might not be possible later today. In my case this is for a number of reasons. Maybe the pain in my back and legs on any given day or night is so severe that I need to take painkillers in quantities that affect my cognitive functioning and render me both unable and unsafe to drive.

Maybe, physically I feel quite well. That, in my case, means the pain I experience can be "relieved" by finding my most comfortable sitting or laying position for a while. But then again, it might be a good day for my spinal condition but a bad one for my depression. Oh, did I mention that. I've been "a depressive" since I was about 11 years old. The extremes of my depression, come upon me roughly every seven years or so. In between times, until my spine collapsed, I was able to remain employed and was very skilful at masking my depression from others who remained unaware of it until such time that it once again overwhelmed me and began to influence my judgement and my actions. Because of my depression, I might have gone to bed last night with my ideas for this piece already formulated in my head, but, I might have woken up this morning a different person in a different body in a different place, and it might have been several days or even weeks before I was able to sit here and complete this.

I would love to be able to go to work again but specialists in both disc disease and depression tell me this would be unwise. In the case of the former this is because certain movements could lead to me losing my mobility completely, in the case of the latter it is because subjecting myself to intense pain for whole days will aggravate my attempts to overcome the depression. So, I am frustrated and angry that after several years of chastising myself for this, and several years of input from others convincing me that that work is not a feasible proposition, suddenly, just as I have come to terms with the reality of the remainder of my life, people who do not and who will not know me are about to make judgements about me with regard to this.

So there you have it. I hope that by reading this you have gained some insight to my world which, as disability goes, is not such a bad one. I hope it will help your understanding of the unpredictability of disability and of the ridiculousness of a proposition that the same "descriptors" can be applied across the board to all persons who live with disability. If I have succeeded you will now understand why the simple act of putting a few words onto a piece of paper, or a computer screen, can be fraught with anxiety and even danger for those who live within the disability culture at this time.

I also hope I have added to your understanding of disability and the folk who live with it as an aspect of everyday life. I hope I have been able to undo some of the damage being caused by a callous, cynical, vindictive, publicity campaign being waged by the government and some charities, to convince YOU that people of disability are not deserving of your support and consideration.

brokenbrian: January 2011.

Brian Barefield Annual Newsletter 2010.

People often ask me; “What do you do all day”: Here is the answer.

January:

My granddaughters had given me a wonderful Christmas present. A dog. It was a Jack Russell/Doberman cross and they told me its name was shaggy. It got me into a little bit of trouble.
We do strange things with names don't we, if someone's name does not end with a Y we tend to add one, thus, Jane equals Janey, Susan equals Suzy, Mike equals Mikey etc etc. And then we do the opposite, if a name ends in Y we tend to remove it. Thus, Tracy equals Trace, Amy equals Aim, Suzy equals Sue etc etc. Now I am as guilty of this as anyone, and, when the puppy went missing one evening and I stood at the entrance to my block shouting Shag, Shag, Shag, before wandering along Frampton Road doing the same.
When the police car arrived, I thought they had come to help me look for the dog so I was quite surprised when they asked me to climb in the back of the car and took me to the police station. They were quite friendly, and once aware of the situation, they suggested I should only call the dog by its full name in the future, I agreed to do this. Oh dear, my memory is not so good and as I was leaving the police station a concerned WPC asked me what I was going home to, I replied: "I'm going home to shag the dog".
Both the RSPCA and my Community Psychiatric Nurse were very understanding about being called from their beds at 1 AM. After some discussion it was suggested that it might be a good idea if I change the name of the dog. I was reluctant to do this at first because, after all, the name was chosen by my granddaughters. After a couple days I reconciled myself to the fact that I would have to change the name if I was to avoid further trouble and so I chose a name with basically the same phonetics as the original one, and which I knew I’d remember because it had stayed in my mind since I watched a riveting documentary about illnesses contracted by canaries who worked down coal mines.
The following evening I was standing at the entrance to the block calling "Slag", "Slag", "Slag", when suddenly, a police car arrived ........

February:

I set off for the Winter Olympics in Montréal. As it is many years since we thrilled to the skill of John Currie and Robin Cousins I packed my skates just in case the team needed a helping hand. While auditioning for the team managers I realised that the twists and leaps and particularly the triple toe loop were having an adverse affect on my back and so was obliged to turn down the offer of a place on the team.
I didn't want to waste the journey however so I asked if there were any other spaces on the team. It turned out that our representative in the men's luge had injured himself in training.
You may be familiar with the luge, it's the event where competitors step into a giant condom which they then pull up over their body and their head tucking one edge under their chin so that just the face is exposed before laying belly up on what looks like a tea tray on runners.
I was doing very well until my mind was filled with the images of previous luge events I had seen on the TV and I began giggling at the site of huge lumps of flesh hurling down the luge track wobbling like blancmanges. This momentary lapse of concentration was critical, the luge and I parted company and I slid all the way to the bottom of the track. I was uninjured however, which I guess proves that the condom really is the safest form of protection.

March:

This wasn't a very exciting month. I spent most of it in negotiation with my GP who I am trying to persuade to get me a wheelchair so that I can take part in the 2012 Olympics. He's not too keen, he says that once I get used to the thrill of speeding around in a wheelchair I might be tempted to use it on occasions when I do not really need to and I might become dependent. No matter how much I reassure him that this will not be the case he is still very reluctant to concede on this matter. You know me; never give up, so I began researching whether it is possible to obtain a leg amputation as "cosmetic surgery".

April:

I was due to be married for the 23rd time but changed my mind at the last moment because I could not stop Jocasta from calling the dog "Little Shit", this had caused many arguments which were so common that we had developed a sort of shorthand. She, in her mezzo soprano voice would cry "Leetel Sheet" and I would instantly response in bass baritone "Slag". When the police cars arrived .... Nuff said, I decided there was no point carrying on when we were unable to reconcile this major difference in our approach to animals.

May:

I was appointed to referee the FA Cup final between Chelsea and Portsmouth at Wembley. I was a bit worried about being able to keep up with the play so I made another request to my GP for the wheelchair, nothing doing.
As I was making my way through the stadium to my dressing room singing "the referee's a wanker" I was approached by Carlo Anceloti: "Meester Brian, Meester Brian, I have a leetel problem, Johann Terry is eenjured and there is only one person in the countree good eenough to take his place". (Between you and me I began to well up because his enunciation reminded me of Jocasta by quickly put that behind me: almost as quickly as I'd put her behind me actually).
Not wishing to let the Referees Association down I ensured that Jimmy Hill was in the stadium and prepared to referee the match before joining Carlo and the boys in the dressing room. After the match Carlo told me "You only committed 47 fouls, you did so well that no one watching the match either here or on the telly will have noticed that Johann wasn't there". (You may have noticed I'm fed up with doing the accent now). "Any time Carlo" I said as I waved goodbye to Didier and the boys in the dressing room.

June:

Quite a relaxed month. Lots of time to play with Slag in the Park.
New people have moved into the flat above me with a baby. As I am still having difficulty in obtaining a wheelchair for training, when it is dark I borrow the pushchair they leave in the alcove beneath the stairs on my floor, and practice up and down Frampton Road and on the Heath. Have had two fingers on my right hand and one on my left amputated after they became trapped between the wheel and the mudguard. Still not much luck getting rid of a leg though. Apparently, with missing fingers, you are expected to run against the physically able athletes at major championships.

July

Decisions, decisions. Should I go to the Football World Cup at the beginning of the month; or the European Athletics Championships at the end? You know me, never could make decisions, so I packed football boots and my running spikes in my rucksack and set off for a month of travelling.
The trip to South Africa turned out to be something of a waste of time. Fabio assured me that he had already picked the best men for the job and that the FA had already paid David Beckham to sit pointlessly on the bench so that role was taken as well. I reminded Fabio that Wayne had not played well for Man.U. since his injury; that playing Lampard and Gerard in the midfield together has never worked; and that Jamie Carragher has a football brain the size of a pea and the pace of a lame cart horse.
After checking one more time that they wouldn't need someone to sub for Beckham if he got called away to do TV work, I left my mobile number just in case and I set of to hitch to Barcelona. I was concerned that there had been an administration error because the AAA had forgotten to send me my pass.
It looked as if that would also be a wasted journey, the AAA informing me on my arrival that everyone had turned up. I decided to hang around however and spent some time with the men's relay teams teaching them how to keep hold of the baton. I was showing Jessica Ennis how to get more leverage into her shot put and javelin throwing when I felt a tap on my shoulder. It was the manager of the Slovenian athletics team asking me if it was true that I had once had a holiday there, I said it was, he said that therefore I was qualified to represent Slovenia at the championships and as they were short of the middle distance runner would I mind stepping in. And so it was that I found myself on the starting line for the 5000 metres standing between the Nigerian who was running for Portugal and the Kenyan who was running for Norway. Unsurprisingly, after all I had not trained, I did not do very well, but I was able to help out the UK by offering advice to Mo Farah every time he lapped me.

August:

I had a lovely surprise, a phone call from Harry Redknapp. He was sure that the reason England have played so badly throughout the World Cup, and especially in that debacle of a game against Germany, was because Fabio had resolutely ignored the advice I had given him.
Harry asked if I would mind giving him some advice. It seems he had a phone call the night before from the club chairman asking if he would like a nice Christmas present, the Dutch midfielder Van der Vaart. I thought about it for a while before telling Harry this was a signing I would be reluctant to make. "Why is that?": Harry asked: "Think about it Harry" I said, “What the heck do you think the people on the terraces are gonna sing to someone whose name ends in Vaart?" "Of course" said Harry; I hadn't thought of that".
The conversation turned to general football chat during which I asked Harry if he had thought of playing Gareth Bale in midfield rather than in defence. Harry said he would think about it. He phoned me a gain a couple of days later to tell me that because his chairman's mind was set on bringing Van der Vaart to the club he had stopped trying to convince him otherwise. We jointly lamented the fact that during the coming season the balletic, artistic football of the Spurs would be played out to a soundtrack of rude noises from the terraces.

September

This was a relatively uneventful month. With time on my hands I decided to resume the discussions with my GP about obtaining a wheelchair. For two weeks I spent every evening massaging Bovril and Daddies Sauce into my left leg from the ankle up to the knee. "Does this look like gangrene to you": I asked him. He sniffed at my outstretched leg, "Smells more like a burger to me", he replied. Oh well, back to the drawing board.
Sadly, poor Slag passed away this month. She had got into the habit of licking up any of the Bovril or the Daddies Sauce that dripped from my leg onto the floor. Unfortunately I did not notice her doing this on the one day I experimented with syrup of figs and creosote. The vet said she would have suffered no pain, she hit the door at such speed that death would have been instantaneous.

October

Off to the Commonwealth Games in Delhi. There must have been some sort of an administration mix up because the AAA had forgotten to send me my pass.
I had heard that after winning the World Championship last year And the European Championship this that Jessica Ennis had decided to take a rest and not compete. Even though I removed the rubber bands from my ponytail and allowed my hair to fall provocatively down across my shoulders, the hotel security guards refused to accept that I was Jessica's replacement. They were actually very rude saying I was the hairiest athlete they had seen since the East German women's team had stopped competing.
I called on the Indian Athletic Association and drew their attention to the fact that mum had been born in their country, and that despite competing for Slovenia successfully at the European Championships earlier in the year, the English team had decided it was time to start bringing through my replacement and that they did not require me at these championships. Sadly, their only vacancy was a place in the 3000 metres steeplechase, so I had to explain that the jolt caused by landing over the jumps might not be good for my back. Ironically, they did have a space for someone to represent them in the men's wheelchair events but, as I still do not have a chair, I was unable to help them with this.
I returned to the UK where I discovered that the Van der Vaart was building a reputation for himself by breezing past defenders and proving very difficult to mark. "That's not a big surprise is it?" Said Harry the next time he called me to ask whether he should stick with the 442 or have a go at 4411.

November:

I was due to be married for the 27th time. I was quite looking forward to it but I had to call off the marriage when I saw on TV that Kate had been two timing me with some posh git called William, going as far as to become engaged to him as well. It was a shame as I had managed to persuade her father to buy me a state-of-the-art, silverplated, racing wheelchair as part of her dowry. It was with a heavy heart that I returned this because I hadn't even had time for a spin round the block in it.

December:

Well, here we are again, it's Christmas, and for a change there is snow everywhere. This has given me the opportunity to practice once more my new-found artistry with the luge. My GP has refused to give me an open prescription for condoms so I have had to buy a wet suit for protection when I practice. (Oh well, it will come in handy at the world scuba-diving championships next year).
I drive to the top of Strawberry Hill, which is the best place round here to practice. For those of you who may not know Strawberry Hill is an incredibly steep hill on the outskirts of Richmond. Many celebrities, i.e. Jerry Hall, Mick Jagger (who are neighbours), live there and Jerry is one of the celeb’s who give me a friendly wave as I slide past the end of their drive’s on a tea tray.
That Mick Jagger is a miserable git though, he hasn't spoken to me since I posted that tweet about him and Keith Richard looking like the good and the bad Gollum in Lord of the Rings.

Well that's the end of my roundup of my fairly uneventful year, it's all come and gone so fast that I feel as if I've hardly moved from this sofa. I hope yours has been a lot more exciting and that you have as many happy experiences as I will have next year. Oh, by the way, I am planning to be married for the 30th time in March. Keep that month free in your diary. We are just waiting for Nicole to sort out her end of the paperwork.
Oh, PS. If any of you are thinking of buying me a dog this Christmas could you please make it one that does not have a Y at the end of its name.

All my love: Hugs ((((((( ))))))) and kisses XXXXXXX Brian.

SAVE THE RAINFOREST: do not print this unless you absolutely have to. If you should absolutely have to you can still SAVE THE RAINFOREST by using it to wipe your arse with after you have read it. If you do wipe your arse in it remember to hold it by the rough side, if you hold it by the shiny side it can slip. Did I tell you I had another finger amputated in November?