Sunday, 13 February 2011

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.

Friday, 4 February 2011

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, clich├ęd, 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.