Saturday, 29 April 2006

Here there be Dragons ...

PauloUcello St George and the Dragon circa 1456

... in the post today, communications from my Accountant, the Police, the borough council parking department and my Member of Parliament. All of them seeming to be a need to get their desks cleared before the holiday weekend, without a thought that they will all arrive on my doormat on a Saturday. All of them feel like Dragons, come to slay the 'Maiden' (my mirror laughs at that).

I visualise the painting where the young maiden is quite all right thank you, has a beautiful dragon on a silver chain, and is just waiting to see what George makes of it all. Saint George being my attempt to internalise more input to the Positive Animus, the Jungian term for that aspect in a female's unconscious psyche that enables her to deal effectively with the outside world. As an aside; the Positive Anima is that in a male's unconscious psyche that enables him to deal with the world of relating and being. The Negative Animus in the unconscious psyche plays havoc with a girl's ability to manage the practicalities of life, and a Negative Anima trips up a boy's relationships and creativity. Hugely over-simplified; Carl Gustav Jung is the master of all.

There is a poem somewhere (which I will look out and quote if I find it) which also bolsters my ability to deal with this in a positive frame of mind. I am just feeling a touch overwhelmed at present. I need to get the Dragons back into their proper cages, so that I don't succumb to negative anxieties when the weekly neuro-toxic drug affects my ability to be positive about anything for two or three days; yes, every week.

The Accountant is fairly simple; he got one of my employee's salary calculations wrong and it is just the neurotic aspect of my many faceted life, that is afraid of telling him he got it wrong, when I contracted him to help me get it right !

The Police sent me their standard form to fill in, requiring me to make a written statement about the incident with the white van man, and suddenly my optimism is slightly cracked when it occurs to me that my view of events is only my view of events. Whereas I knew what had happened, because I was there, the police don't know what happened, were not there, and only have my word for it. They, quite rightly, will take notice equally of my account of events, my passenger's account, and the white van man's account of events. I can only rely on one of those three 'realities', my own. My passenger's experience was not the same as mine, as she was not driving. What the white van man will say in his defence, who knows. So it feels a little wobbly, and I am trying to talk myself into a feeling of safety in this,

My appeals against the two Parking Charge Notices have failed, so I either pay up (busting the budget) or get involved in the stress of the next stage of appeal. I feel I was right in my defence, as there is no disabled parking provision for exiting a wheelchair adapted vehicle by reversing down a rear ramp in a wheelchair, into moving traffic. Extra wide disabled parking bays only consider transferring from a wheelchair into a side door. On street parking is always stressful, even with my blue badge and the wheelchair symbol and a polite request in the rear window asking others to leave 3 metres clear space. I never know until I return whether someone will have parked too close behind me, so I cannot let down the rear wheelchair access ramp. I have to avoid all sources of stress, to quote my doctor, so now I will consider which is more stressful, the busted budget or the appeal process.

The M.P.'s letter is the one source of stress that I cannot deal with until next week. His complaint on my behalf to Social Care & Health about the delay of three years for wheelchair access into and around my home, has resulted in a decision by SC&H in my favour (hurrah), allowing the extensions and adaptations agreed and recommended by my Occupational Therapist and Care Manager. However, the grant/loan conditions imposed by SC&H, I believe do not comply with Fair Access to Care criteria and Housing Adapations regulations. SC&H have quite expertly answered my M.P.'s complaint in such a way that I now neurotically feel as if I have been a naughty girl. Very neurotic.

So, blogged and discharged, I shall now spend the rest of this spring day outdoors. The Maiden has hushed the Dragon, who is now snoozing quietly, with just a gently drift of smoke from his aristocratic nostrils. St George is polishing up his armour. If I had typed 'amour' that would have been a Freudian slip !

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Thursday, 27 April 2006

Adding up

Its too late to be starting a blog (I should be asleep) but I have been catching up with the week all day, and tomorrow I have to start on tomorrow's list, to finish before the weekend, before the start of my two/three 'down' days due to weekly drugs, (after which I have to do the equivalent of rebooting a computer with my cogdysfunck'd brain) and then another week begins, with another week's lists of things that ought to be accomplished.

Today, no electricity in the village, off for eight hours so that a Larch, higher than any houses around, could be safely taken down without electrocuting the workers on the overhead wires. The starlings will miss it, there was room for a least a hundred in its twiggy branches. In the summer it was a nursery for that season's new birds on the block. No electricity I can cope with no problem, but not the noise of chainsaws and branch chipping machines, so I have been away from the house all day, with no restorative sojourns in my reclining chair, on the bed or in the garden.

Today the Optician did not bend to my pleading of poverty as much as I hoped, but a 30% discount is something for being a loyal customer who has ordered three pairs in as many months - I am not the only person with Meniere's Syndrome who cannot manage varifocal lenses. Yesterday the IBM man on his final visit finally sorted my laptop AND popped down to Tesco to get me some more discs ... bless him, how could he say 'no' when I explained that my home help would throw a wobbly if I put CD/RW 48x on my weekly groceries list. I don't 'do' Tesco anymore, something to do with their lights and my Lupus and/or Meniere's. Waitrose, in this respect also, is superior but a close-by one is not due to be built until next year.

Tomorrow is pay day for my Staff, who I employ under the Direct Payments Scheme from Social Services. So I have to get my brain in gear early, to make sure I write cheques that match the payslips produced by the accountant, before I leave for ...

Rheumatology department and the lovely Dr R, to explain to her again that I don't drink alcohol, its the drugs that keep the Lupus in check that are messing up my liver function. No one has offered me champagne for at least three months.

Adding up - I don't anymore, I have an accountant to enable me to use Direct Payments, much in the same way as I have an electric wheelchair as I don't self-propel, due to Lupus muscle and joint pain and weakness.

Don't you just lurve Direct Payments from Social Services - explanation follows for those who would like to try it. Social Services give me, the service user, a budget to buy services for my assessed home/day care, which costs Social Services roughly half what it would to send in their own staff. When I did receive care services I had no choice who came into my home, and initially they sent 16 different home helps in 18 weeks. Not good. My care manager and I agreed that the local day centre wasn't quite what I needed !! Day centres are not at all what many people need.

For me, the Direct Payments scheme means I choose who I work with, fine in theory, but in practice the best home help I had left me with a glowing reference in order to work for social services. Only one applicant to the advert for her replacement, so not much choice in reality. I now have two home helps, half a week each, and two personal assistants, on ad hoc contracts. With my PA I do concerts, 'walks', exhibitions, and gardening. A bit like a 'husband' someone once observed irritatingly. Employing a PA beats a day care centre any day of the week.

For Social Services department, service users opting for Direct Payments means, in theory at least, that they can provide care services to twice as many service users. Or cut their budget in half. The service user does all the work; recruiting, police checking, contracting, insuring, training, administering, supervising, paying. The costs to the service user of doing this (paper, ink, quill pen/laptop, filing cabinet, phone calls, postage) should be provided for as expenses. 'Expenses' also includes, accordingly to my rules of engagement, contracting an accountant to process the payroll and keep the Inland Revenue people happy. I await my annual review with Social Services finance department to see how much of that they accept.

However, keeping internal financial records for Social Services is something I can no longer do with confidence, as often, but not all the time, I cannot add up. I loose that ability temporarily. I have spent my life being able to add up, beginning with my fingers and toes, and progressing to small company and parish council accounts together with burial ground accounts (and putting the little crosses in the ground according the to map, to tell the grave digger where to dig !). Now my cognitive dysfunction means I cannot always follow the processes needed to keep account of things, and although 1 + 2 still = 3, sometimes the processing goes awry, resulting in 1 + (which line am I on) 2 (I thought I had done that already) = (have I done the first bit first, or the second bit third) = 3, or 2, or 5.

Therefore my accountant has produced a pretty coloured spreadsheet for me to keep my DP accounts on, and he fills it in when I can't. I wait and see what Social Services's annual review makes of that innovation.

I don't need an accountant to do Sudoku, because as I explained to a friend with mild Tourette's Sydrome, and offered an explanation to a blogger, its not about adding up. That is not obvious in the instructions. So for me Sudoku is a useful test of my brain's ability to follow a process, to assess if the weekly drug dose has yet cleared my system.

Adding it all up, life in disability for me, is o.k. Listed on the credit side is the fact I no longer have to work 9-5 Monday to Friday, which I did for years as a single parent, which was hard. So now I choose what to do with my time. My income although tight is secure. My home is my own. On the debit side is worry about coping with future progressive disability, and coping with society's dis-abling attitudes and the built environment on a daily basis. The balance at the end is in my favour, for now.

I know it is not as positive as that for many disabled people. To help where I can, I write about it and blog about it. I volunteer my help wherever it is asked for. I cannot do sums, but I can explain how I have manage my life in disabilities. I can also counsel, encourage and support. That is how I earn my living, my place in society, using my skills and repaying my dependence on state benefits, for so long as I am able to.

Wednesday, 19 April 2006

The b..... got me. (Not Safe to be Out Part 2)

I do love our English bobbies, especially the handsome ones who are kind and who call me by my first name rather than Mrs .... which I am not, thank you.

Not safe to be out ? B....y ba....d in a white van got me - but I got him, hence my love of English bobbies. I am conscious that swearing maybe received as more offensive than talk of sex (which was refreshing, thank you), but I had to get it out !

I have had (had had, did have ?) a wonderful afternoon with my PA at Salisbury Cathedral, on a tour with a group of friends, one of whom is a very knowledgable and entertaining guide. The Cathedral is more accessible than my parish church, not that I am a regular at either, being far too far into alternatives.

My parish church is not wheelchair accessible but has a pleasant churchyard which is a good place to sit. It is on a little hill adjoining farmland, above a stream, and its been there for probably 600 odd years, and the church wears its Victorian make-over without too much fuss. A good friend was buried there, far too young, a few years ago, so when its warm enough, occasionally I go and sit near her. A bit like telling the bees. Its peaceful and rural, and its a nice trundle through the village in my powerchair.

When I asked the parochial church council to put a permanent ramp over the Victorian step into the building (which when built had no need of steps and had an ancient extra wide doorway), and they said no, I said fine, I'll go to Salisbury then ! (so there !). I have not been inside the parish church since.

Salisbury Cathedral is magnificient, totally wheelchair accessible, good cake, prayers, excellent choirs of both boys and girls, the first girls choir in the country. An organ with base notes that get into the very fabric of your physical being, and the stained glass gladdens the eye and expands the soul. Its also a feminine church, dedicated to Mary.

The Cathedral (for those who don't know) was originally at 'Old Sarum' atop a prehistoric mound. The new location is built on gravel, with a river flowing under it, and with foundations in part only 4 feet deep, which is why the spire (404 feet high) isn't quite as central as it was in 1220. I
t has a ley line going through the transept and a strong spiral under the spire. Which came first, the spire or the spiral, who can tell.

At Salisbury Cathedral they have a daily tradition of short prayers on the hour, reminding us of its purpose, and the organ is played beforehand, but floats in quietly, and floats off again just before prayers. The tour lasted two hours and with three stops for prayers, at the end of the afternoon it felt like a short pilgrimage; a progression around the space, and a little feast in the refrectory afterwards. Lovely.

Then three miles down the road on the way home, the white van got me. He overtook on a double white line (no overtaking) approaching a hill, and when I braked (as he couldn't see over the hill if there was any traffice coming) and sounded my horn, he deliberately swerved into me, with a loud bang, then sped off. It was the look he gave me as he overtook just before the bang that convinces me it was deliberate. I was very shaken, but conscious of my insurers (Motability) I got his number. OH YES, I got his number and phoned the police, who came within twenty minutes, as I mentioned the wheelchair, excellent service. And the police will be interviewing the white van man soon!

But he has damaged the front wing quite badly, which means a spell in the body shop for my van, so I will be home based in my rural village while it is being repaired, as without the van I cannot transport my powerchair. The bobby said it is an offence not to stop after a road traffic collision, and fortunately I have a witness in my PA, so we will be making statements and the police will be interviewing the driver. They've got him. Yes. (So why do I feel scared now, which is why I am blogging it, to offload.)

Another pot of tea is required now I think.

But first, thanks for comments on my previous blogs, very much appreciated. I will respond on those pages.

Tuesday, 18 April 2006

Aaaargh ... !... . (laptop again)

He is a very nice chap, the man from IBM, and quite happy to visit me for the fourth time in two weeks (thanks to extended warranty).

He says my laptop problem will go down in IBM history as the one that refused to be fixed. He has taken it to pieces, and put it back together again. I now have a new mother board, and a new CD Rom drive. And a new annoying high-pitched noise under the keyboard, and a new creak on the bottom left of the bit I rest my wrist on, and a new refusal by the printer cable connection to be plugged, and now, intermittently, the scroll button freezes. I get a message to say "do you want to learn how to use the blue scroll tab?" and if I click yes, the message box disappears and the button won't move, for ages, then it does and the window comes back up and I click no and the button won't move for ages, and I have no control over when it freezes, pops up or just ignores me.

Which is, suprisingly, all very re-assuring, because the IBM man confirms none of this is anything to do with me. Its not me, my cogdysfunct, nor lingering neuro-toxic drug effect. The laptop hardware is at fault for the initial problem, and its his fault for not ensuring all ran smoothly after he put all the bits back together again.

So we have another date next week !

But not until next week's neuro toxic drug effects have passed, because today Tuesday was too soon. I could not take in his explanation of what might happen next, whereas last week on Wednesday I was up to speed and following his every explanation. I cannot take in new information for about 48 hours after the drug (MTX is low, very low, dose chemotherapy). I can talk, write, blog ( the easy stuff !), about subjects I already know, because it is already in my brain somewhere accessible, but taking in new information, or switching to a new subject is problematic. I cannot find the bit of the brain that 'runs the programme' or the short term memory to hold the process. I cannot find the door that leads to that part of my brain. The door to that ability has temporarily disappeared, so there is no point looking for it - because I don't know whether I am looking in the right place - which is called 'yes I know this' or I cannot do it because I am in a different space altogether .

I know that I am fortunate that this drug caused brain blip is temporary and merely adds to the slight cognitive dysfunction that comes from Lupus exacerbated by Menieres, or Menieres exacerbated by Lupus (no, neither my doctors nor I can decide which). I used to get quite distressed about the additional neuro toxicity of the drug, but now provided I am strict with myself and don't attempt too much, I just treat it as a couple of days off every week. I test my ability with Suduko - if I cannot process the simplest ones, then the drug hasn't left my system.

I cannot drive during this time (except in medical necessity - see blog on red light !) or make complex decisions, or read anything challenging or non-fiction. Thankfully, the temporary brain blip does not stop me enjoying fiction, music, friends (provided they come here, and I sit down while they get the tea), and it is all in a good cause - suppressing the damaging effects of Lupus, and it has worked a treat for seven years, so no complaints really !

I was once treated as royalty, with due deference, by a young chiropodrist, until I realised that her training was shockingly out of date - when taking my medical history, she had assumed and acted accordingly, that as I have Lupus, I had not long to live ! I brought her up to date on Lupus (which yes can still be fatal, but that is rare due to new drugs). She relaxed. It was still a very pampering experience.

I talk about my illness and disabilities in an attempt to normalise them as much as possible, to help non-disabled people be at ease with me, and to offer newly diagnosed/disabled people see some light at the end of their tunnel. People who are fit and well sometimes, in my experience, see any loss of health as a major disaster. Its not, for me. I know that for many disabled people it is hugely difficult. I am fortunate that my transition into disability was slow through ill health; yes it was problematic until I got a diagnosis, and disability benefits and home help in place, but I am fortunate to have lived a greater part of my life in good health. My friend J had no time to adjust, he came off a motorbike and was instantly paralysed. It took years to get out of institutional care and into independence. His resilience and input into the community through volunteering, taught me a lot. Now I choose how I spend my time on good days, within the limitations of a dis-abling society. More of that on May 1st !

This blog may seem off topic, to the subject heading, but this IS life in the Disability Shire, and that is primarily what I intended to use my blog for . If I can blog about my disabilities, then I can get on with outer life in a better frame of mind. However, blogging is blossoming into much more, which is a real joy! Thank you everyone.

Talking about my health - enough already. A few blogs back, a blogger friend said he was to have an 'investigatory procedure' sometime this month. Without wishing to pry, I am probably not the only blogging friend who would like to know when this is expected to happen, so that we can send him our best, know when to send him our virtual hugs (if he likes that sort of thing!) and/or good luck, and then know when to welcome him back afterwards. I quite understand if he just wants to disappear for a while then re-appear afterwards. So, over to him

Sunday, 16 April 2006

Getting Down to the Nitty Gritty

This is what I loose sleep over the most, this is where I feel the most isolated, this is what I would appreciate the comments of disabled bloggers on.

A few weeks ago this county's Director of Social Care and Health made a statement in the local press, that SC&H were re-considering the eligibility criteria used in their assessments of peoples' need for services - the point at which SC&H draw the line below which no person's circumstances will be eligible to receive a service. It seemed likely that the line would have to be re-drawn, from its current position at moderate level of need, to substantial or even critical level, resulting in far fewer disabled people receiving social services.

'Oh My God, What Have I Done' - was my immediate paranoid reaction, so I checked it out with reality. Onto the county council website to read the SC&H committee meeting reports, yes there it is, December meeting, months ago ...consider raising eligibility criteria due to budget cuts etc etc or words to that effect. Nothing to do with me, stop panicking.

Paranoid ? Anxious and feeling responsible actually because at the time of that press statement, I had written to my MP asking for his help because for three years, without success, I have been asking SC&H to meet my disability needs. After three years I am still waiting for grants for work to make my home wheelchair accessible. My MP had sent my letter to the Director of SC&H. We await his response, but the SC&H committee discussed eligibility criteria and budget cuts months before my letter.

In my letter I had expressed my belief that although SC&H's published eligibility criteria had the line drawn at moderate level, in many areas of service provision, including funding houseing adaptations for disabled people, SC&H would not consider your case unless you were at a substantial or even critical, level of needing a service. Critical as in 'danger of death' it seemed to me.

I had written that SC&H should be honest and straightforward and state publicly (in their information leaflets) that their funding could only meet assessed critical need. Their information leaflets should advise service users of the objective criteria against which objective decisions on their needs were made. Otherwise, in my experience, individual SC&H staff could subjectively decide whether or not they would put the service user's case forward for limited funding, even after objectively assessing that the service user's need met the moderate line of eligibility criteria. Sounds complicated; I have written it three times (and lived with it for three years) and cannot make it any clearer.

In writing to my MP I wanted to highlight that the level of funding that central government allow this geographical county, is shamefully low and does not allow SC&H to meet its statutory duty to provide social services. Now I see it a little differently. Central government funding is shamefully low, but there are also local political influences at county council level that thwart the good intentions (there are some!) of central government policy.

(Bear with me - this is going to be a long one; many disabled people will know what follows, many will not, so skip the bits you already know.)

Elected councillors who sit on county hall committees decide how to allocate the money received from central government and local taxes, to their various budgets (schools, roads, social services etc). The elected councillors who sit on the SC&H committee are responsible for arguing in county hall committee meetings, for adequate funding from the budget, for the services they represent. The elected councillors (elected by you in local government elections) have listened to requests from their officers (employees of county hall including the Director of SC&H), weighed those up against the other elected councillors' arguments for their committee's responsibilities (roads, schools, leisure services etc) and come to an agreement. Local politics.

Which resulted in £X? million, yes million, pounds being cut from this county's social services budget for the year. Did we service users create a fuss, did we write letters to the local or national press, did we bang on our elected councillors doors, did we invade parliament, did we block the main entrance to county hall with placards ? Of course not, we were too tired, too ill, too poor to afford the petrol/taxi to get there, too afraid of rocking the boat, risking loosing what we already had, or shaking the foundations of the reasonably good relationship we had built up with our local office of SC&H, we didn't want to be known as 'trouble' in case it made it worse for our own situation.

Also, possibly another reason why not - do the disable people who are service users of social services know what services they are entitled to receive ? The service users of schools, leisure centres, roads etc, generally do have a good idea of what services they are entitled to expect, but disabled people often do not. The users of social services often rely on information supplied to them by social services, to explain to them what they are entitled to.

I did. Three years ago when I requested wheelchair access in my home, I was told by my then SC&H Occupational Therapist, and the DFG (Disabled Facilities Grant) man from the district council, that I was not eligible for grant funding, and I accepted what they said. On my request for wheelchair access in my home, three years ago I was told - No; two years ago - Maybe; one year ago - Yes; this year - Yes But. That 'but' was a decision by the SC&H funding Panel that went against my understanding of all legislation and guidelines I had read (listed at end).

That is when I wrote to my MP, after reading the legislation, reading the guidelines from Dept of Health and ODPM website (listed at end), applying the Social Model of Disability to considering the restricted life I lead. I wrote to my MP after due consideration. After I had considered whether it is fair and reasonable for my life to be so restricted, not by my medical condition and resulting disabilities, but by lack of money in the budget of service providers, for the services, equipment and adaptations that they had assessed me as needing.

Let me take you back (thank you for your interest so far) to county hall committee decisions on allocation of funds to various service budgets. If £X? million pounds had been cut from other service budgets, say with the result that 1 in every 5 leisure centres in the county would be closed, or 1 in every 10 school bus services cut, the local papers would have had to order in extra newsprint to contain the articles and letters of protest. Yet for many reasons, all understandable, this did not happen when the cut to the social services budget was announced in the press. I think that lack of protest could lead to a belief among people who do not use social services, that there must have been a significant over-funding of social services before, that now could be cut back.

Maybe non-disabled people, and people not needing social services, may have thought the cuts and lack of protest at the cuts, must mean that disabled people can manage without some of those services, and if they can manage without, maybe they didn't need them anyway, so they must have been getting 'stuff'/services they could manage without - if they are managing now without protest, now that the budget has been cut by £X? million pounds. Convoluted reasoning yes, but is that what non-disabled people, and people who have never needed any service from social services, actually think ?

Are we managing without ? No. Disabled people are not managing, we are putting up with or suffering, a lower quality of life than that which legislation says we are entitled to. We are struggling, or giving in, to live in, even being housebound in, inadequate or unsuitable accommodation, because we are not givng the funding to make our own choices on where we live, or given the grans to make our own homes suitable and safely usable. We are afraid of being told to move into modern town centre accommodation, away from our gardens, our communities, our friends and neighbours, but easier to manage by social services or housing association budgets.

People who only know the restricted life I now lead, and didn't know me before ill health and disability, think that I live this restricted life because I am disabled. That is the Medical Model of Disability. I live this restricted life only partly because I am ill, but mostly because without the equipment, adaptations and services I am entitled to, I cannot access the life that they take for granted, on the days when I am well enough to do so. That is my understanding of the Social Model of Disability.

Other disabled people that I have met don't have the home care, personal assistants, equipment, and adaptations that I already have in place, only because they don't know they are entitled to them, or don't have the information, energy or ability to get them for themselves.

I don't have these things because I have money stashed away somewhere to buy them, despite being dependant on means tested and disability benefits. I don't have these things because I am lucky. I have these things because I have the ability, for now, to fight for grants, argue my case, beg for charity (well actually, write polite letters and copy my bank statements). I have these things because, at the moment anyway, I am able to NOT put up with being patronised or coerced or bullied by service providers. I am doing this because I can, other disabled people may not be able to. I am doing this because the service providers may then think twice before patronising, coercing or bullying other service users. I am doing this while I still can. I may not be able to do all this in five, ten years time. Before my medical condition degenerates to that stage, I want to help ensure that the way services and funding are provided, are fair, equitable and implemented to legislation and government policy, and reliably in place and documented and guaranteed. I want all this before I am too ill, incoherent, disabled, to be able to still fight on. I don't know what will happen to me in my medical conditions, but I have to proceed on the basis of a worse case scenario, in case the worst happens. It will be too late to start moaning then !

So I have been 'quietly' getting on with my own case. I have not organised protests and I no longer join committees (in my experience they are dispiriting at best, damaging at worst). I have used my past experience in local government, employment law (to understand the logic of legislation) and psycho-dynamics (in basic terms, why is s/he doing that - what's their game ?). I have tried to push my own case forward for three years.

Now I am feeling vulnerable and isolated, so I publish this on my blog and hope it reaches beyond my laptop to empathetic others. I offer my conclusions, reached from my own experience, which may or may not resonate with yours -

1 The Social Model of Disability is the foundation of all. That is not accepted by some funding providers who act as if The Budget is all. Add to The Social Model, the Human Rights Act as well, and really 'they' have no excuse for that attitude. But they have the power, so until they are forced to accept the letter and the spirit of the legislation, they often act unfairly. Their actions affects the quality of our life, our physical and mental well being, and our inclusion in those aspects of the society of which we are members, that we want to be able to participate in.

2 The easiest way for employees of SC&H to keep their jobs and sleep at night, is not to push the elected councillors to push the government for more funding, but to push the services user to accept less that the law says they are entitled to. Put pressure on the weak and powerless (the service user) rather than put pressure on the strong and powerful (the elected councillors). There are notable, honorable and admirable exceptions among SC&H and local government staff at county and local level. They give me hope and I work with them where I have found them, and there is mutual appreciation, support and understanding of the difficulties the other is dealing with. However, they are paid to support me. I am using my limited energy and resources without pay.

3 The employees of SC&H - from the bottom to the top, from the OT and Care assistants right up to the Director of Service, cannot change things alone. Probably only the elected councillors can make a real difference, by making brave sustained representation to central government. As disabled people and service users, we can help them to change things. If we can or are able to, then we should talk to our district and county councillors who we have elected, if possible before the May local government elections. If we can or are able to, then we should try to work for change within the existing framework, by working with those service providers; the OTs, Care Managers, Social Workers, local Team Leaders, who do try to support our need for services - and insisting on our rights, when we have the ability and energy to do so. If we can, we should find out what our rights are for ourselves, not only rely on social services' publications. Those local government employees and social service providers that are brave and independent within their profession, should make representation through their line managers, to their Director of Service's office. The Director could then provide the case histories and statistics within SC&H service provision, to enable the elected councillors to make representation to central government, through their representative MP and through their professional associations. That is my understanding and idealised view of how it could and should work for change.

4 There is a 'post code lottery' in funding for social services and grants for disabled facilities. What services, equipment or disabled facility adaptation is funded in your geographical county, may be different to that provided and funded in your neighbouring county, or next town or village. That enables a 'divide and rule' situation to exist, so that national and local campaigns by disabled people are thwarted, as disabled people from one county, district or town, get more or different help, services and equipment, than disabled people in other counties, or the next town.

5 Therefore, there are more likely to be campaigns by disabled people on issues that are the same throughout the whole country, such as mis-use of disabled parking bays, winter fuel payments (thank you 'Disability Now' magazine), than on quality of life issues, such as wheelchair access in the home, or even getting a wheelchair in the first place. Using wheelchair provision as an example; the issue is further complicated by wheelchairs being funded by the NHS (only indoor wheelchairs, not outdoor wheelchairs), wheelchair access ramps funded by district council mandatory Disabled Facilities Grants, and any necessary assessed eligible room extensions for wheelchair access and disability equipment, by SC&H discretionary grants or loans.

6 All disabled people who want to, should be able to access support, information, training and representation, in the social model of disability, in the legislation that governs their lives and the provision to them of services, and in what quality of life and level of social care and equipment and medical services and equipment, they have a right to expect and demand. Then there would be an ever widening circle of independent disabled people who know how life should be, and know how to help make it happen.

'Hate Something - Change Something - Make Something Happen'


A - Department of Health 'Fair Access to Care Services'
(1) Guidance on Eligibility Criteria for Adult Social Care.
(2) Practice Guidance 'Implementation Questions and Answers.

B - Office of the Deputy Prime Minister 'Delivering Housing Adaptations for Disabled People' A Good Practice Guidance. November 2004.

C - Disability Rights Commission. 'The Disability Debate'
(email: Lord Ashley's Independent Living Bill' February 2006.

D - 'Hate Something, Change Something, Make Something Better' advertising jingle and film

E - 'Disability Now' magazine

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Wednesday, 12 April 2006

The beat of a butterfly's wing

The beat of a butterfly's wing can change history.

These days, with occasional cognitive dysfunction, I sometimes need visual reminders of where information and other stuff is. So far the last two years I have been leaving myself notes and clues on the laptop of where I can find various archived things I may be looking for. However, that only works for recent events . So I cannot verify the short story source of the title, (is the book at the back of the cupboard in the spare room or the inaccessible loft, and do I use today's limited energy looking for it, no). It may be a science fiction short story by Ray Bradbury, a modern classic, so someone out there remind me please.

Today IBM called again (third time, thankfully on extended warranty) to fix laptop problems with CDRW, and I learned a little about 'Firm Ware', which the friendly IBM man explained, as neither hard nor soft.

As I sat watching him working with my laptop, in my mind I zoomed back in time to the 1970s at ICL in London, as support secretary for the sales team. I sent a though back in time to my younger self; (platform soled shoes, long floaty skirt, thin !) ... "Look how this has progressed from that time". She was sat in her office above London Weekend Television, typing up proposals for vast hardware and systems to install in client's air conditioned specially built rooms in their basements. Then, modems were telephone handsets in briefcases, and discs were about 12" high x 18" wide which had to be lifted onto 3 foot high disc drives (note: find the photo). To my younger self I sent a message about how quickly it will move on, to a laptop at home. People must have sent similar thoughts down the years to Mr Babbage (Charles Babbage 1792-1871).

Such thoughts sent back in time, do not change history like the Butterfly's wing story, because I am still sat here with no changes visible in me or my surroundings to what existed before I sent that thought back in time. How would I know ?

Tuesday, 11 April 2006

Not safe to be out

Whether its out in the blogosphere, or out in the car, I should take more care when going out when I am affected by the weekly neuro toxic MTX dose.

Off to the surgery this morning for my regular blood tests which have to be taken two days after the drugs, but it takes the drug two and a half days to clear my system so its sometimes a bit tricky. I have to think before I do anything other than what is strictly necessary. Therefore I don't also go visiting, shopping, or get petrol, just do the bloods and home for a restoring cup of tea.

So off I went (and this time I remembered to put the wheelchair in the van) oblivious to being on auto-pilot. Slowly driving along a quite lane approaching a main road, watching some men taking down a tree, suddenly there was a 4x4 nose to nose in front and a very cross lady mouthing something at me through her windscreen. I had sailed through a temporary road side red light, which not normally being there, didn't register on the auto-pilot. I will take more care next time, but I am independent most of the time and I object to using my one day a week employed PA's time to drive me for a blood test - we have better things to do with the time graciously granted by Social Care & Health.

In the blogosphere, my sincere apologies to Lady B - I may have offended her. I responded to her post on eye wear, which response initially appeared, then disappeared. I attempted to do it in suitable style, and yes I really do have all those pairs of spectacles and use them in those situations, but maybe I was 'off-kilter' somehow and did not judge it right and I have been deleted.

Also - to explain about the freezer (last two posts) - Q: when is a freezer not a freezer? A: when its not the same freezer as your freezer. Only Superwoman would consider taking a top opening chest freezer outside to defrost. My freezer is small, like a little cupboard, with a front hinged at the side opening door. Sliding it across the kitchen floor to the outside door and tipping it over the step was a doddle. Pictures to illustrate my blog would help, but I haven't worked that bit out yet. Patience please.

I hope to have mastered more options in Blogger in time to participate un the The Goldfish's 1st May initiative. I urge all who haven't already, to read her blog. Thank you Goldfish.

Monday, 10 April 2006

Spring sprung twice and more on the domestic front

Spring sprung twice, oops.
And the freezer glided beautifully - it was empty !
Why does this feel as if my OT is watching ?

My philosphy is I will only find out that I can no longer do it, when I can't and until then, I do.
For which I am grateful. If I fall I know I cannot get up, so I do a risk assessment first. Today I assessed the freezer to be more at risk than me. It survived, and the pain and muscle weakness I was left with took my mind off the pulsing tinnitus.

The pesky sparrow that is squatting in the new des.res. put up under the eaves last autumn is under notice, because I saw my first House Martin at 7.45 pm, wheeling in from Africa, enjoying the sunset and feeding above the meadow, so back to the hawthorn with you little sparrow, so that I may be serenaded night and morn by the sweet chortlings of my summer neighbours. I visited them in Algeria one September years ago, so it is lovely they come to stay with me each summer.

The AGA oil supply is now run dry so its chilly in here, and the oil tank stays empty, until the architect, OT, council DFG man, and me, decide where the wheelchair access ramp is going, in case the oil tank needs to be moved. It is only 2 degrees C outside at the moment, so not really warm enough, but nevermind, I have my comfort blanket to keep me warm.

I do have a life outside the domestic round truly, but during the days affected by weekly drug side effects I am more of a spectator, and now - a blogging commentator. To myself mainly, but I welcome comments.

Spring is Sprung and Dizziness Pings

Its here, its out, its warm.
The sunshine has reached this south west DisabilityShire. There may be 5 inches of snow in Kent but head west and spring is springing. Swallows have arrived and are greadily skimming the river for insects to get their strength back, but the little egret takes no notice, he/she has been here all winter and the swans are as unconcerned about H5N1 as I am.

The wind is in the south west, but over the fields beyond the garden it feels north easterly. Out of the wind and in the sunshine sits my freezer. Yes, my freezer. What does a girl do after the home help (L, bless her) has left ? Decides to defrost. Our fore-mothers dragged the rugs out and threw them over the washing line for a good beating, but in the 21st century we have different denoters of spring cleaning and new applications for the transportation systems utilised at Stone Henge. Instead of wooden rollers, (I think that's right) the freezer (small) slides along on a thick towel, dis-ability being the mother of invention, then tips over the step and gravity deals with the melt. The remaining clean up will have to wait for L's return.

I'd rather be walking the dog. What dog?

Today I should be resting, until the weekly drug (for Lupus) clears my system, but I woke up with severe pulsing tinnitus (from Meniere's) and I cannot just sit and listen to it. So today, although fatigue waits in the wings to come on inappropriately, the arthritis, dizziness, pulsing white noise and pinging high pitched notes, have all conspired against me, and lost, for the moment anyway.

The drug MTX has its own weapons; liver toxicity - which keeps me sober, although I always make an exception for champagne; and neuro toxicity - which is my excuse for any and all errors I may make as a new blogger, and I reserve the right to call up that defence whenever.

Sunday, 9 April 2006

Animals that have befriended me.

Dogs, and cats equally, but as a child I dearly wanted a budgerigar, a blue one, in a cage, with an elasticated flowery plastic bag thing underneath for what purpose I do not know.
Dogs in early childhood were frightening, cats invisible.

Later pre-teens my friend D had a Jack Russell and I wanted one too. My Dad tormented me with one of his favourite answers to "where are you going ?" ... "to see a man about a dog." I thought he meant it.

Then one day he really did, and Sooty arrived. Black, of course, and I didn't name him. He really was a whippet/Cairn mix - hairy and very fast ! We had adventures - close by was a deserted sand quarry with sand martins and a conveyor belt - imagine bouncing along an enormous rubber band - fun, a bit scary, never would happen nowadays (the lament of the over 50s). We watched tv together and he waited for me to come home from school, at the end of the street I whistled, and he came speeding down to me, ran round a few times and shot back up the hill to tell everyone about it. I learned the peace of walking for hours, away from family chaos, in fields and woods, alongside streams, now culverted and built over.

Fast forward ... On the day I knew I was pregnant, on a dark and stormy night returning home from work, there was a ginger cat waiting by the door. Visits to the vet became as frequent as the ante-natal classes. She sat on my lap, and as my bump grew, she accommodated it, until there was no more room, then she sat on the chair arm next to my bump. She ignored the baby once it was born, and walked away when it began to crawl after her.

My bump now has cats of her own, well not strictly true, her neighbours' cats visit her daily when their owners have deserted them to go to work. Which is the perfect solution, no vets bills.

The soul that I am most looking forward to greeting again in heaven, is the magnificent Airedale who accompanied me for twelve difficult years, and kept me going when nothing or no-one else could. She had a large vocabulary, understanding more than she let on of course, not being able to speak (!). She was used to being the King (dogs are usually masculine images in Jungian terms) of the parish, only ever submitting to the superior height of an Irish Wolfhound, but he had no brain. Woof was all he ever said, or understood.

I do love cats, and cats do appreciate me. My respect and good manners usually meets with their approval, and my lap is accommodating. But I also appreciate the birds in my garden and they do not appreciate visiting neighbouring cats. Mr Yaffle, the big green woodpecker feeding on ant hills is almost as big as a cat but leaves noisily when the cat appears, and the buzzards are too far above anything to be concerned, but the sparrows, robins, thrushes, blackbirds, risk loosing their babies to that damned preditor from over the road.

A dog would be good now, companionship and reassurance, if it had long legs to keep up with the powerchair, and patient enough to wait for me if I decide to walk a bit on a good day. But I cannot guarantee to be well enough to exercise it every day. I do not qualify for an assistance dog, but I would need someone to help train it to accommodate my limitations. And living in a rural area there are not that many places away from traffic that are safe for wheelchair dog walking. Cities have parks, villages have footpaths, with stiles and mud. Yes, I know about CROW2000 and DDA, but where is the funding ! But see Disabled Ramblers website - mountains and The Globe. For three years I have been asking a nearby NT venue to link up its wheelchair accessible routes with its dog walking routes. They admitted they had not thought of it ! Last year it was promised for this year, well ok carefully worded to suggest it would happen without actually saying it would definitely happen. It hasn't. Another battle not yet won.

And tomorrow I tackle the council parking department, so that when return to my WAV after a good evening' s music, I don't find another PCN. I have written two appeals in two weeks, and have nothing left for a third.

Fight the good fight.
Night night.
Sunday afternoon, and before the weekly brain fog begins, an intro...

Life is good, generally, the sky (overview) is blue and the clouds (slight disabilities) have silver linings ... but storm clouds gather - and shared umbrellas with other bloggers keep the worst of the weather (currently service providers) at bay.

Deep in the countryside life is quiet, safe, sometimes isolated. Septic tanks need management but lack of mains drainage ensures the adjacent views will never be built on. Hares, buzzards, foxes, house martins are as much my neighbours as the ones who use lawn mowers, pressure wash cars, chainsaw fallen trees.

Music enjoyed recently - theorbo and bass viols, Green Wing's sound track.
Blogs appreciated recently - Diary of a Goldfish
Books - Alice Hoffman, Adriana Trigiani, Barbara Kingsolver, Jung (always).
Moans - PCNs, DFG delays
Shiny Silver Stars to - my OT, Mr A Brendl, AAL (10th anniversay, may he rest in peace), my accountant.

Invitation - other's views on the social model, independent living, country pursuits.

Time for a nap.