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

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

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

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

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

And there is more - - -

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

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

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

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

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

Disability & Work: Bullying

A contribution the BrokenofBritain campaign: DWP45: Fit For Work

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

 

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

 

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

 

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

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

 

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

 

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

 

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

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

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

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

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

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

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

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

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

 

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

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

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

 

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

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

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

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

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

 

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

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

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

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

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

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

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

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

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

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

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

 

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

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

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

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

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

 

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

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

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

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

My own post interview conversation would go something like this:

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

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

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

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

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

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

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

 

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

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

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

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

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

 

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

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

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

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

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

 

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

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

In short, it is bullying.

Brokenbrian.

A contribution the BrokenofBritain campaign: DWP45: Fit For Work



 It works like this:-

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

The Welfare Reform Bill and You.

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

If you are following te Guardian Link you want this one

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

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

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

http://bit.ly/dJ6zVs

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

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

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

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

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

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

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

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

Regarding Housing Benefit

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

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

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

Regarding Homelessness

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

Regarding Unemployment Benefit

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

Regarding Incapacity Benefits

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

Regarding “The Cuts”

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

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

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

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

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

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

Broken Brian



For theBrokenOfBritain campaign “Left Out In The Cold"

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

So what does the Welfare Reform Bill mean for me?

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

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

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

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

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

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

Broken Brian

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

"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