Disablism Killed the Muse !

The Goldfish's Blogging Against Disablism Day 2008

has arrived.

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TO GO STRAIGHT TO GOLDFISH'S page for links to

104 POSTS so far and counting ....

I began blogging way back when, when I needed an outlet for the creative thoughts that were swarming around in my head. That is how I began, tentatively, to give voice to the Muse. Then unexpectedly it changed; Charles Dawson, Blogging Mone, Spotted Elle and Goldfish arrived: WOW I didn't expect that - a response, and over the months others visited and are famously blogging along here and at the BBC's OUCH. It became, happily and entertainingly a crip-blogging world. More recent blogging friends comment and keep in touch and are linked over to the right. (If I stop to put in links, as I should and could but can't get my cogdysfunk'd head round just now, I would loose this thread of thought.)

So my blog became, unexpectedly, a daily source of support from other crip bloggers. I heartily recommend it. Without blogging friends I would have reached deeper despair long before I was able to see that the only way to get the help I needed to fight this dis-ablist society, to get disabled (sic) facilities and adaptations to my home, requested of the powers that be in 2003, agreed with them in 2005, not yet begun; was to contact the Local Government Ombudsman and let that investigation sort out Social Services.

I do not need to recap the handicapping capped budgets at County Hall here today. But I do need to record that without the support of blogging and blogging friends and contacts from all parts of the blogging world, I would not have felt it was right to fight the Good Fight.

I am not alone in fighting the Good Fight - the Seahorse (linked in the panel on the right) is treading a different route to a similar goal - and you may be too, or may be thinking it might come to that, or even you may be thinking that you are not entitled to help. How would you know ? If you do know and you are fighting, then blog it, or get in touch here by a comment, so that it can be recorded that there are others who are struggling, who have to use their limited energies in fighting the Good Fight.

All this fighting, researching, letter writing, having meetings; all take energy, that people with disabilities, chronic ill-health, impairments sensory or physical, or learning or mental health issues - just don't have to spare from the needs of their daily living. So something has to give. I have not given up blogging, but I cannot do it daily, weekly or even monthly sometimes. Until I get the facilities and adaptations in my home so that I am no longer dis-abled by the built environment and lack of equipment.

So, my argument is here, that dis-ablism killed my Muse ~ that soul-residing complement to my outer persona, that feminine aspect of the psyche that needs expression, for me, in writing creatively. I don't have the spare energy anymore. The pain from the laptop on the lap (no wheelchair accessible desk) comes quicker, stays longer, stays stronger. And all my writing energy and creativity is being used in keeping the Local Government Ombudsman's investigation at the forefront of my fight for my rights. And the rights of other service users of this County's social services department.

EDUCATION ~ EDUCATION ~ EDUCATION

How do you, as a person with an impairment, know what help is available to you, what society says you are entitled to in terms of help, equipment, services, an income, a life ?

If you are not living the life you know you could live, not getting the assistance (in all its forms) that you feel you should be getting, how do you feel ?

Negated ? Selfish ? Frustrated ? Fearful ? Depressed ? Embarrassed ? Resigned ? Forlorn ? Don't see the point in fighting, don't have the energy, the brain space to fight, can't fight for it, too ill, too impaired. Just exist, keep on keeping on, unable to resist the slow slide into worse the next day than it was the day before.

Where do you get the information ? who is going to educate, advocate, support, assist you - to reach that reachable goal - independence - so you are no longer dis-abled by society.

Through the snail-mail each month I receive Disability Now magazine, originating from the Scope organisation - "about cerebral palsy - for disabled people achieving equality." In this month's issue, is a printed insert, a quiz in which Scope invite readers - all readers not just the people they represent - to Take our Quiz to find out - "Are you in control of your life?". As I most definitely am NOT I thought YOU might NOT be either, so - if you want to complete the quiz online, go to http://www.scope.org.uk/disablism/audit where your input will enable their campaign. The statistics they gather from people who take the quiz they will use to: " tell politicians and policy makers what it is really like to be a disabled (sic ) (sic !) person."

Disablism is rife in the lack of education for dis-abled people about their rights, specific to their own central government's legislation and controlled by their own social health and care providers through local government. Repeat the mantra: It is not your impairment that disables you, but a dis-ablist society that does not take account of your impairment and provide you with the equipment or built environment to enable you to overcome the limits of your individual impairment. In other words - its not you its them !

How often do we think to ourselves - I can't do that / have that / be that - because I am disabled. How often can we rise above those negative thoughts to thinking - I am quite capable of doing that / having that / being that - if only I had the financial means / equipment / opportunity. Education is all. Those with the power may not have told you you can - do that / have that / be that - because it would spend their precious budget they assume they have control over. Education is often not provided to service users (us) by the social health and care providers (them) because they would loose control if we knew what they should be doing to assist us live the lives we should be living. Which leads me to my next rant ...

ADVOCACY ~ ADVOCACY ~ ADVOCACY

By this I mean proper professional trained independent funded Advocacy - not volunteers, not necessarily people who themselves have impairments - Advocacy that has the clout (think big wet cloth not fighting fists!) and that can force County Hall budget deciders and social services departments, to automatically provide to dis-abled people what central government has legislated should be provided so that people are no longer dis-abled in their impaired lives.

Disability Law Services, with advice, support and advocacy services, are available in some areas of the UK. Usually in cities, where there is a geographically concentrated client base, that makes the funding and setting up of such a service, with lawyers, advisers, advocates, with accessible buildings for their offices, awareness-raising publicity and advertising, all economically viable.

I dream of a Disability Law Service in all areas, that can deal robustly with legal issues, interpret legislation, and support, educate and advise dis-abled people and advocate for them. A service that has independence, that employs the independent trained professional people, that has the powers to ensure that providers of social care services comply with the law, with central government's guidance and legislation, on providing for the needs of dis-abled people, for their health, well being and social inclusion. Powerful stuff.

When I have the energy, when I have the disabled facilities and adaptations, when I have the time, when I am no longer fighting my own personal Good Fight, then the next fight, will be ensuring that Advocacy is available.

Did they think I would quietly go away happy once the Local Government Ombudsman has completed his investigation. They really don't have a clue. Unless they read it here first !

The Muse is not dead, merely resting, biding her time, and donating her services to the Good Fight.

Call to Arms

http://www.ngw.nl/

Who's Afear'd ~ not Me !

This is the coat of arms of Dorset County Council, granted to them in 1950 by the College of Arms. They got the motto from the Society of Dorset Men (not exclusive to men), to whom it was suggested by Thomas Hardy in 1905.

I am not afraid of the Dragons at the County Council. Maybe its the ongoing investigation by the Local Government Ombudsman that currently enables me to feel this; maybe it is a growing confidence that they (the corporate body) are, in my experience, blinkered public servants who are incapable of seeing beyond the edge of their (corporate) desks into the Kafka-esque abyss they are creating for the users of social services.

Certainly I know that the latest systemic steroid injection fires my brain up, clears the cognitive brain fog, boosts up the stamina and even cools down the heavy molten lead carried around my whole body, just under the surface, by the systemic erythematosus that is the inflammation of Lupus. (Be warned, a systemic steroid injection doesn't suit everybody and does not help every condition of fatigue and brain fog; certainly not CFS/ME in people I know of.)

I feel like sending a rocket up the County Council's (corporate) arse. My paternal great grandfather could have been of practical help in this, for as lifeboat coxswain, he may have had a few to spare after this ...

The nitty-gritty of the new situation I now find myself battling with Social Services, is dull to all except those directly affected, but I put it here in case there are, out there in the blogosphere, any other service users of Direct Payments.

So this is a Call to Arms to other disabled people who are users of their Local Authorities' social services department's Direct Payments scheme. Disabled people who employ their own staff for the home care and day care they are assessed by social services as needing for their health, safety and wellbeing (to use the correct wording), including assistance to attend medical appointments or in other health care settings .

We should get together, virtually, and compare experiences of problems, and their resolutions (not revolutions, yet !), and perhaps have a rocket practice so that, all over the country, local authorities get the proverbial rocket up their (corporate) arses.

http://www.jubileefireworks.co.uk/

The County Council are short of money for their social services budget. To (allegedly) disguise just how enormous are the budget cuts for social services, they have (allegedly) combined budgets from social services departments, libraries, adult education, community safety (sic) and health improvement (very sick), and re-named the whole damned conglomeration ' Adult Services', which now has a whacking great budget, made up of all those previously separate budgets, each having its individual budget cuts thereby disguised.

Then they (the corporate they) (allegedly) decided to grab as much of the National Health Service budget as they could get their hands on, thanks to central government encouragement to the NHS Primary Care Trusts and Local Authorities with Social Care Responsibilities to work together to deliver services.

Remember that central government has poured lots of money into health care (as it affects voters of all ages and incomes) and not very much into social care, as the not-yet-disabled voters don't think it will happen to them, so its not a vote-loosing strategy. Cynical, moi ?

So, what is new, is that now my social worker informs me that, without notice, without my consent, without consultation, without any thought to the affect of their policy change on service users, AND without adhering to Fair Access to Care criteria, Dorset social services policy is now that the service user; I, will have to get the money to pay my PA to assist me at hospital appointments, not from Dorset County Council Adult Services with whom I have entered into a contract for Direct Payments to purchase the care I need; but from the hospital I go to.

Bizarre. Not on. No way. Have they not heard of the law of contract ?!

Obviously not, so I have told them. That the County Council cannot change the terms of my contract with them without my consent, without notice, without consultation with service users, without thought that the contracts of employment that I have entered into with my employees, is founded on the Contract for Direct Payments with Dorset County Council, which guarantees the regular amounts into my DP bank account from which their salaries are paid. So that I am not liable for the money to pay my employees from my benefit income - nor from my occupational pension from Dorset County Council !

And all sorts of other contractual reasons why not, which took four typed pages to explain it to them. All the reasons the council lawyers, service managers, team leaders, social workers and jobs-worths do not appear to have considered. Telling them what they should consider. Telling them how to do their job of supporting me as a service user, to met their duty of care for my health, safety and well being.

Posted yesterdday. I feel as though I have done their job for them. Without pay.

I could be wrong. How am I to know for sure, without professional legal advice on the law of contract and employment law ? Access to which professional advice on Direct Payments should be provided to service users by the County Council. Well, I don't consider the one-man DP advisory service that I refused to use any more over three years ago, meets that remit. I refuse to have that smelly (allegedly), (in my experience), bully (in my experience), (allegedly) in my house. Yeah, that's another axe to grind another day.

All I can do is shout loudly over four typed pages how this change in Direct Payments policy will impact negatively on this service user. And refuse to accept it.

They can earn their salary now and sort it out. This has been churning away in my mind and guts for almost two weeks now, and my laptop has taken a helluva battering. Now my laptop and I need some space and peace and quiet.

Always the Jungian, this image returns to me time after time. The dragon I hold on the chain is being defeated by my positive animus; my knight in shining armour, representative of a woman's ability to deal with the world. The lady in this painting is not Afear'd.

Paulo Uccelo ~ St George and the Dragon c 1456

Even so, I need to calm down my indignant racing heart so I don't need to take any more beta-blockers to deal with the physical effects. This would be a good way to calm down ...

Odilon Redon - The Mystic Boat

COMMENTS ARE WELCOME ON MY BLOG - please click on 'comments' below to read what others have said, and leave your own comments. I have elected to moderate comments, so your comment will not appear immediately. That is how I delete the comments that are offers from companies all over the globe to recruit PAs for me.

OM ... OM ... OM ...

meditatinginwalesdotnet

Weak title, I know, to introduce the Local Government OMbudsman, but you know how it is when you have been praying, keeping your fingers and toes crossed, wishing, saying little spells, even meditating (OM OM OM) and touching your favourite bit of lucky wood, and then it comes right, it happens and you think, crikey, which little superstition actually worked this time !

None of them. Just the Universe turning and the System working. And just a little smidge, a light sprinkling of fairy dust.

ancientworldsdotnet

Way way back in April I finally plucked up courage to ask the LGO to investigate Dorset social services delay in providing wheelchair access into and around my home, first discussed with my social services Occupational Therapist in 2002 and formally requested in 2003.

An LGO Investigator came to see me in June and yesterday he emailed me to confirm that:

" ... On behalf of the Local Government Ombudsman, I am investigating your complaint.

That, since March 2003, the Council has delayed adaptations to your home. ... ... ... As a result, ... ... ... . You have also suffered stress (exacerbating your health problems), financial loss, a limited social life and have fallen in your home."

(I have thought long and hard on whether to blog it here, as I don't think I am entirely anonymous anymore, and even though the Ombudsman's findings when published, will be in the public domain for anyone to read, the Complainant is not identified. However, blogging is an essential part of my support system, and I need to put it out here. It is what is happening to me.)

The Investigator goes on to summarise my complaint, which is lengthy, and not noted here because DCC have yet to answer my complaint, and until the Ombudsman makes his decision on their response, they are innocent until proven guilty, except this is not a process in a court of law so there is no criminal or civil case being investigated. Just an 'Ombudsmanial' process. I don't know what the proper word for it is either.

What decided me to contact the Local Government Ombudsman is that the LGO can DIRECT a local authority how to put right their systems so that they are acting correctly in their procedures, systems and in arriving at their decisions. So not only can the LGO tell a local authority what to do to put right an individual's complaint, and order compensation to be paid to the complainant if appropriate, but also the fact of a complaint being made through the LGO ensures that the local authority has to change its bad practices, which will benefit other service users.

In the bigger picture, I am hoping that the Director of Dorset social services is able to use the LGO's directions (whatever they may be) to ensure the social services directorate has its necessary share of the County budget (from central government) to fulfil its statutory duties under the 'Fair Access to Care' criteria and the central government guidance on 'Providing Housing Adaptations for Disabled People' .

So, having got to this stage in the process, I am bursting to celebrate, but its early days yet.

And finally the Company converting the VW Caddy into my Wheelchair Accessible Vehicle have restored my faith in them, sorted out the adaptations specification with Motability, which I have confirmed I am happy with, and they have given me a delivery date for next week, and I even know the registration number so I know it really really now exists and is mine, all mine. I will soon be able to wave from my WAV !

brotherwooddotcodotuk

And, no, I don't need them to provide a man to push me - this is one of those occasions when all that is needed are batteries ! And a powerchair with a small turning circle to fit in my small cottage, part-funded by the N.H.S., topped up with donations begged from charities, for delivery when the adaptations for wheelchair access are, finally, in place. Five years on, and counting.

Pride Quantum 600 - geraldsimondsdotcodotuk

Any questions on LGO, grants for adaptations, or equipment, please comment, or email me in confidence.

A bit of a 'crash'

Not a vehicle crash, just a physical/mental/emotional/psychological 'crash' ... crashed out, caved in; the need for a 'duvet day' turning into a month of wanting to hide under the covers; 'crashing' like a computer crash when there is just too much coming from too many different directions, some of it not that different from a computer crash from incoming malicious software. As my laptop did last week.

Crashing - as we do, those of us struggling with health problems on top of struggling with the system; whatever system it is, in whichever country we are in. None of the sources of my crash are malicious in intent; just life.

Regular readers will know of Social services delays to disabled facilities and adaptations. For five years. My resulting physical exhaustion leading to falls and damage to me and equipment. And fear of falling. And fear of breakdown. I CAN COPE I keep telling myself, I am ok, I can do this. Except it goes on for too long and too many things keep happening and, alone, I feel fear and anxiety that I may not survive it. For I know that: "Fear of breakdown is fear of the breakdown that was." (Reference: Boundary and Space D. W. Winnicott page 192.) More on that below*.

Many things happening that have to be dealt with, so systemic steroid injections to suppress disease activity and release me from the brain fog that is the result of the increased disease activity which is the result of the stressful situations I am in, always remembering that stress triggered Lupus ten years ago and medical advice is to avoid all sources of stress. Yes please, that would be good.

At last, a visit from the Local Government Ombudsman Investigator to examine my files on Dorset Social Services delays -Excellent. Exhausting. Now wait and see.

A resulting return of the fear and anxiety attendant to my preparation for the Employment Tribunal (against local government employer) ten years ago. Almost to the day. Same process, different type of investigation. Same fear (fear of breakdown that was). Will I be believed. Will the local authority's big guns and solicitors run rings round me. Fear of physical breakdown. Employment Tribunal process over a six month period, ten years ago, broke my health and triggered Lupus.

Meanwhile social services front line staff on the alert (as the LGO Investigator informed the County Council solicitor) so social services front line staff and team leaders are firing off letters to me, which are designed to show them in the best possible light and me as a problem service user, and all have to be answered, very carefully, to protect myself.

Using laptop on lap (no wheelchair accessible desk, no space for wheelchair or desk until adaptations in place) causes a return of severe pain in joints and soft tissues. But I have to do it because there is no one who can do it for me, no advocate or agency with the knowledge or training. Even after I have achieved my necessary facilities, there needs to be change in all social services for other people out there, who do not know their rights, who put up with delays and decisions that disable them from social inclusion and a family life. I know. Really, I know. There would be more official complaints if more people were informed on their rights by independent advocates, and supported by professional advocates to enter in the Formal Complaints procedure. Not all areas of the country have access to a Disability Law Centre. Certainly not in Dorset.

And another thing ! .... After years of distance my Mother, hundreds of miles away in the North, is wanting contact, which thanks to years of psychodynamic counselling I can now cope with without harm to me or mine. This recent change in her (and probably me as well) is weird so I am planning a visit to her, while we are both alive to do it, as she is very aged and frail and I have not been able to travel to her since ill health began in 1998. Now possible with the expected new WAV and a PA. So I am now researching (from the Disability Rights Handbook http://www.disabilityalliance.org/ ) and writing a Community Care Grant application for petrol costs and self catering accommodation, for me and my Personal Assistant and my wheelchair, as I cannot do it without her, or it. And I have had to book the last accessible self catering cabin in the neighbouring forest and pay up front to secure it without knowing if I will get the grant, so not looking forward to the next bank statement.

This visit to my mother is entirely dependent on a new and different Wheelchair Accessible Vehicle, which will not have the current vehicle's noisy wheelchair tie down system, so I can contemplate a long journey. But this too is now a problem and source of Lupus exacerbating stress. The new WAV via Motability from vehicle converting company B has been blogged about before (18 March 07 sorry link not here). The expected new WAV is the result of application to Motability last October (nine months ago) based on advice from the vehicle converting company B, witnessed by PA and photographed by me to send to Motability with application. The new WAV was due for delivery May 31st. Panic by B ... what they said in October would be workable by me in my disabilities, at end of June they said would not work, but need extra bits costing another £X00. Motability declined to pay. B pressuring me to pay. I don't have £X00. B saying it is my fault, my misunderstanding, my responsibility. Stalemate. I can do nothing but wait (anxiously) for them to accept that I cannot pay, Motability won't pay so they will have to fund it themselves. After three difficult telephone conversations with my contact at B I know he is determined not to admit his error, despite my witness and photographs and to discredit and blame me. I just have to sit tight with fingers crossed and wait for him to accept responsibility.

~~~~~

*Fear of Breakdown ... Fear of Breakdown that was:
In my psychodynamic counsellor training and training analysis, I learned that I have been blamed by my parents for all their problems since I was six months old, when my father had his first psychotic episode**. Living with that left a lasting shadow on my adult life. Charles Dawson http://www.charlesdawson.blogspot.com/ blogged on this form of abuse. My parents saw me, and treated me, as the source of my father's psychotic episodes. If they could control me and control my actions and my words, they could control their lives. I experienced the first breakdown in the holding environment when I was six months old. I left home at 17 in order to survive. Later, being married took me out of my father's dominion; being divorced risked being sucked back in. Defences had to mounted. I am now well armoured. There are chinks in the armour. Whenever some authority figure; be it a service provider, or a national organisation, attacks me I have to mount a defence that recognises the fear I feel from childhood, but responds appropriately as a capable, (although knackered), intelligent and informed adult.
(** Post-Postscript: In case I am misunderstood, let it be known that it was not my father's psychotic episodes, from his bi-polar disorder, that left a shadow on my life, but the way my parents projected their discomfort onto me; as the cause of his illness, and blamed and controlled me as their way of not accepting his medical condition.)
~~~~~

Blogging is one of my defences against the dark powers; the psychological shadows, the bureaucratic local authorities. Connecting with other bloggers is another defence; bloggers who have experience of this, in their professional lives and/or in their ill health, this being disabled by the system, by society, by the brick walls of budget cuts and bureaucracy. Recent negative waves experienced in my corner of the blogosphere did not help and the loss of a blogging friend of intelligence, wit, knowledge and experience was keenly felt.

Thank you to those who remain, and thank you for those who continue to connect, who continue to fight the good fight. During all this down time I have been aware that your lives and blogs are testament to a good fight, worth fighting for.

POSTSCRIPT ... the morning after ...
In the post today, Form IB50 - yes, the dreaded IB50 which I thought, foolishly, I was immune to - 'Incapacity for work questionnaire'. Why did I think I was immune ? Because they have not sent me one for a decade. I do not have the capacity to comply with this form's requirements. If I do this, it will take up available energy this week, when I should be answering social service's letters from two weeks ago, before I answer their letters from last week, then fill out the community care grant form, and write to the Warm Front Scheme about their contractor's disabling attitude and refusal to meet my disability needs (no I didn't bother to blog that one), and on and on and on ...

The End to A Perfect Day

Corfe Castle, Dorset

thewalkzone.co.uk

Feeling very relaxed after a Perfect Day Out, I have spent some time this evening reading your blogs and re-visiting my own writing and your comments. I have often felt over-whelmed by the beauty and determination blogged elsewhere. A bit teary too. Being here is a good end to a Perfect Day.

I had to be in the relaxed frame of mind a Perfect Day brought me to, to push my fingers to type wwwdotbloggerdotcom because so much got tied up with blogger and blogging. I have felt incapable of writing as the Sally I know and feel comfortable with, until I had let time weave a new skin over that lesion. I have felt incapable of connecting with this important part of myself.

Update on my life, for the record, which apart from my Perfect Day, still sucks ...

The dinosaurs and money-bags are still lumbering over different ways to delay meeting my disability needs. Even my last resort, the Local Government Ombudsman, did not reply to my complaint about Dorset Social Services within four weeks as stated, but four weeks and one day on, emailed me to say: sorry, going on holiday for a fortnight, will contact you as soon as possible when I return. So that is alright, is it? I ask - to myself, as he has disappeared on holiday. I will still be here when you get back, provided I haven't fallen again, worse than last time.

The organisation I referred to as Adapta-Crip when I self referred myself to them last September, (as Social Services were going on holiday before they had time to refer me), have written and answered my question on why they have done nothing to help me with social services (keep up, sorry, but its a long sentence), as they are contracted to by social services and other government funding; saying social services have not made a referral so we do not have an open file on you. I cannot untangle that enough here or in my own mind, to add it to the list given to the LGO about the four year delay, sorry its now four and a half years delay, to answering my request for wheelchair access into and around my home.

The Speculative Burglar (no, not Burglar Bill, see post below, sorry too brain tired to link) may have been my neighbour after all, unlikely though it seemed at the time, due to ... well, nevermind, but he is receiving treatment. This is just supposition. That his sudden onset medical problem led him to behave in such an un-characteristic act. I could be wrong. But, sorry though I am for him, his dog and his wife, for me its preferable to the Speculative Burglar suggested by Charles Dawson's comment.

I miss Charles Dawson. His writing was always informative, entertaining, inclusive and intelligent. Whatever happened in the backgroud, it is shameful that a published diatribe, sorry, comment, on someone else's blog, should have been instrumental in his departure. For whatever reason. It is rare, as someone else put into words for me, better than me, for there to be a male crip writer, writing regularly, and that is not to detract from the other male crip bloggers, here in the UK, USA, and New Zealand, but you male bloggers know you are few and far between, so we could not afford to loose another valuable, respected and well loved one. For whatever reason. Shame on you that was the very public party to his departure. For whatever reason. Blessings on those of you who have visited (here) and emailed me. You have been in my thoughts.

Enough. Charles if you are lurking, blast you, come back ! Fight the good fight.

My Perfect Day:

Cloudy not sunny, warm not hot, Friday not Monday (not neuro-toxic drug day drugged), bouyed up by steroids, on a roll. Home Helps back in harness this week (fully forgiven; one's husband serving in Iraq, the other's friend died while they were on holiday - what am I complaining of !) and because they are back, the housework, shopping, laundry, all worked smoothly, so I have been able to have the energy to see a way clear to going out, safely with my PA. Which reminds me, not to complain of Social Services alllllll the time. I have had a budget through Direct Payments for some years now, 9 3/4 hours home care and one session 'day care' per week which pays the PA, which means I am able to go further afield safely. I acknowledge that many other crips are struggling, as I write this, to achieve the same basic rights for themselves.

I GOT TO GO TO THE BEACH !!!

My PA drove my Wheelchair Accessible Vehicle, the twenty miles to the bit of the coast at Swanage that has disabled parking next to the short slope down to the short sandy beach with the wooden groynes to hang onto when the walking stick sunk into the sand, and to sit on at just the right height to have my feet in the waves ebbing and flowing away and towards me. I just sat there, blissed out, for an hour, and it is years since I have been able to do that. A combination of circumstances; steroids, PA, cloudy and just warm so able to cope, and a parking space right next to the bit where I could manage the beach, leaving the wheelchair in the car. Last year I tried the same town but could not park.

On the journey there, taking a back road that up until the last century had been the main road, we drove through leafy cuttings in the rolling slope, passing old stone farmhouses with stone tiled rooves (rooves ? roofs !), over tiny bridges over deep narrow streams, and small fields with thick hedges being left or cut for hay. One field gate open, so we pulled in and stopped for a picnic lunch. The field fell away down the hill in front of us, the restored Swanage Steam Railway toot tooted along the valley below, and the magnificent splendour of Corfe Castle stood in the gap between the two hills off to the right. We lunched with a hare, who was wandering along the field in front of us, delicately choosing which herbage to nibble for her lunch. Skylarks, chaffinches, honeysuckle and dog roses in the hedge, unchanged for hundreds of years.

I have been earning my living also. Using what spare energy I do have to put something back into the community as a volunteer, in recognition that I live off benefits.

Dorset is one of nine areas in the country to trial a Local Involvement Network: LINk. Being facilitated by the Commission for Patient and Public Involvement in Health. To replace the Patient and Public Involvement forums, which, word has it, are being disbanded by the government because they were successful, or depending on which side you are on, because they had become local vehicles for party politics.

Anyway, my thinking is there is no money at County Hall for the other love of my life, disabled rights of access to the countryside and coast under the Countryside and Rights of Way Act 2000 (Class 1, 2 and 3 vehicles - wheelies), so rather than use my energy banging on about that, when there is little funding for replacing stiles with wheelchair accessible gates, I may as well see if the LINk can make a difference to funding for, wait for it, Health and Social Care. Another government initiative, bringing together (mixing up?) the previously separate National Health Service -v- Social Services and calling it 'Social Health and Care' (or was it Care and Social Health, or Health and Social Care ?). My entirely personal view is that it will start a war between the two, with each one grabbing a potential client a.s.a.p. in order to get a bit extra funding. As a community volunteer, to me it feels like I am involved in a game of chase the funding; use your energy in the field of community involvement that is the current government initiative of choice for government funding. Cynical, me ?!

I went to the first 'Event'. Well, they paid me (£10 food voucher and £4 travel expenses) and they had cakes and strawberries. I watched the Powerpoint presentation, read the information boards, talked to the bods with name tags on, and still didn't understand the questions. To one very helpful man from the Commission (helpful initially with my wheelchair ramp, then with the form filling and questions) I said; this seems very nebulous. He laughed. It is, he said.

That's all right then.
Its not me, not my cogdysfunct, not my impairment.
Its the government !

As a friend of mine says whenever his farming hits another batch of form-filling:
" Bloody government ! "

Just for the Record - my first 1st May BADD post

Having joyfully found my lost original 1st May contribution to BADD from the www, via my site meter, I am re-posting it here, and thank everyone for their comments, which are still attached to my truncated 1st May post.





I used the Goldfish's categories for inspiration:

Abortion and Euthanasia

I am old enough to have been spared abortion. If I had been an impaired foetus, technology had not progressed to looking at a foetus in the womb and so society, then, had not progressed to deciding on its economic viability.

I will be old, sooner or later, depending on my degree of impairment. I hope that society has not progressed, by that time, to economic euthanasia.

Access Issues (outside employment)

Nine years ago I was given a NHS manual attendant wheelchair (I cannot self propel) but the NHS did not provide an attendant to push me. I stayed at home, waiting for volunteers. Six years ago I requested, but was refused, a NHS electric wheelchair. Five years ago I had begged enough charity to buy one.

Then I asked the District Council and the County Council social services for wheelchair access into my home. Four years ago I asked for wheelchair access inside and around my home and the NHS assessed me as eligible for an electric wheelchair but, as I had an outdoor electric wheelchair, with their funding I had to promise to only use their funded wheelchair indoors. They would fund 20% of the cost. Two years ago (after I had waited two years) the County Council social services assessed me as eligible for wheelchair access into the house and into principal downstairs rooms.

Last week I asked the Local Government Ombudsman to look into why the County Council were still preventing me (and wheelchair using friends) from having wheelchair access into my home; preventing me bringing my outdoor wheelchair indoors for storage and charging; preventing me having the use of an indoor electric wheelchair; preventing wheelchair access to principal downstairs rooms; preventing assessed as eligible for provision of safe usable bathing, toileting and washing facilities, and not providing wheelchair access to disability related equipment for communication.

Three years ago I asked the Village Hall Committee to comply with the Disability Discrimination Act and provide wheelchair accessible toilet facilities behind the toilet door that had the wheelchair symbol on it. And asked for one of the two fire escape doors to have a ramp down the two steep steps. Two years ago the Parish Plan recommended the wheelchair accessible toilet and fire escape. Last year the Parish Council recommended the same to the Village Hall Committee. Nothing has happened. This year I am too tired to go to the Annual Parish Meeting and witness by my presence that they have done nothing.

Art Against Disablism

Last year I didn't join the local art class under the adult education provision, with a favourite artist teacher who I had known years ago, even though it was held in wheelchair accessible premises with toilet facilities and parking; because I needed practical assistance, reliable, guaranteed each week, and no volunteer service could guarantee that, and social services budget for social inclusion would not stretch from paying my PA for one session, to two sessions, of 'social inclusion' a week.

Definition and analysis of Disablism

It is illegal - Disablism - just like Sexism and Racism, but like those isms, it happens. Nothing more erudite than that I am afraid, here.

Disablism within Healthcare Systems

I had a bump on my forehead, a benign osteoma. Over twenty years it grew to being Big. Painful. Unsightly. Benign none the less. The Medics did not want to operate to remove it because I am a wheelchair user and that would be difficult for them on the in-patient ward. Yes, they said so, to my GP. The next reason the Medics gave for not wanting to operate on my benign osteoma was because I have Lupus. My GP had to be persuaded by me, and then be persuaded by me to tell the Medics, that I was well enough to not have Lupus related complications during or after the surgery, but I might not be in a few years time when the osteoma had grown through my skull into my brain. Best to do it now, don't you think ?

Education

One of the written-down reasons, taken from the officially approved list, that my Occupational Therapist gave the budget-deciders at County Hall, to persuade them to fund my assessed as eligible disabled facilities and adaptations, was that I would then be able to pursue further education and academic study.

No, I said to my OT, I have no intention of pursuing a recognised course of academic study. Been there, done it, got the certificate. Thank you but No Thank You, I am too old to jump through that particular hoop again. And, besides, its a Lie. The perfectly adequate and true reason is that I need access to disability related equipment for communication so that I can manage my life independently in my physical and cognitive disabilities. That is sufficient. There is no need to lie that I need it for an education.

Nonetheless, I would like to further my artistic education. But that is a different social services budget.

Employment

I have not been an employee since I took my Town Council employers to the Employment Tribunal in a case for constructive dismissal, disability discrimination and sexual harassment (not all by the same person !).

Example: Newly arrived new Boss: "You are very awkward, aren't you Sally."
"No, I am not awkward, I am disabled; I have Meniere's Syndrome, and that is very awkward for you."

Experiences through Family and Friends

Scene: I have explained to my Mother, on the phone, why I cannot do what she wants me to do.
Mother to Sally: "You are very selfish Sally."
Sally: "No Mother, I am not selfish, but I am ill and I am disabled."
Mother: "Well, what's wrong with you ?"
Sally: "There is nothing wrong with me; as I have explained, I have a disease, Lupus, Systemic Lupus Erythematosus."
Mother: "You can't expect me to remember all that."
Sally: "I will write it down for you, then you will have no excuse to forget."

Later, I send her an information card from the Lupus Association.

Mother: "What did you do to deserve that then, IF it IS as bad as you say it is ?"
(Was that a double or a triple insult in one sentence?)
Sally: "Nothing." Puts phone down.

Weeks later, she has softened a bit:
Mother: "Well, where did you get it from ? You didn't get it from me and there was nothing wrong with your Dad."
Sally: "Well, you are my parents, so it must have been the combination of your genes that has resulted in my genetic disposition to Lupus."
Mother: "Hmm." (in a huff)

(I swear this is verbatim)

General Thoughts on Disablism

It is something to focus energy on, to fight, to blog against, to feel we do have some chance of changing it by challenging it, here.

Impairment Specific Prejudice

"You DO look well."
"But, you look well."
"Aren't you looking well."
"You're looking so well."
"You must be feeling much better."
"You don't look ill."

People with Lupus look well. Fact. So well in fact, that in 2000 the Lupus Association published 'A GP Guide to Lupus' (115 pages) which was launched at Westminster and sent to every GP surgery in the country. This because so many Lupus patients (90% of whom are female) were not being diagnosed early enough to prevent permanent skin, joint, soft tissue or major organ damage. Because they look well, their doctors were not taking their reports of ill health seriously. From the book's introduction: "... such patients are frequently categorised as hypochondriacs."

The result for me: a wheelchair, because for four years my male GP had not taken me or my symptoms seriously, stating: " ... you have a neurotic need to be ill."

Being in a wheelchair brings its own specific prejudice:

I am bowling along in the shopping centre, dressed smartly as I usually am when I go out into what passes for civilisation. I have made the mistake of going out in public during the school and college holiday. Two teenage girls, attractive, well dressed, not Chavs, ever so slightly moved further away from the approaching me-in-a-wheelchair than is necessary. As I get closer they look down on me and, as one, they frown, crinkle their noses, shake their heads slightly and ... I can't get the words right, to describe what is unmistakably their intention to inform me: I am a smell, I am an affront to their youth, to their right to not be exposed to disease, I should not be out in public, and worse; I am female so I have an extra duty not to be seen in public; I have female parts that should not be seen in a cripple, not be associated with disease, it is an insult to attractive females and I have no right to associate in peoples' minds, disease with breasts and a womb. I am an abomination.

No, just Me, in a wheelchair. I was not harmed by their attitude, but I seethe still.

Love and Sex

Yes please. Oh, sorry, general Love - yes I get lots; from my Bump, and special friends, who know I love and appreciate them. And blogging friends, who I hope know that I love them, especially as by their dedication to reading my blog they know me as well as, probably better, than most of my friends. Sex. That would be nice.

None English Blogs

Mohebat once visited my blog leaving a one word comment of praise. At the time I followed the link (no longer functional) to Her/His blog, but I think Mohebat was Iranian, so without a translation facility, all I could relate to was this exquisite picture on the page, which expressed a lot of what today is about. S/he has not visited since.


Parenting

For me it is all about my Bump no longer needing parenting. That is the hardest part yet of being a parent of an independent adult with an impairment; who no longer thinks of herself as disabled and, therefore, nor must I.

Poetry Against Disablism

Written three years ago when brain fatigued and cognitively dysfuncked, not able to get the wheelchair indoors, physically exhausted, depressed.

Lupus loop: zombie shti, cognitive dysfunct.
No laptop, no ramped assent, no wheelchair,
No buggy round the bend to the u-bend,
No lift to the stars in the stair lift.
Sleek quiet soft seat outside in the jeep,
Inside, stumpy feet in sheep-skin standing,
leaning, trying.
No DFG, no TLC. No crying.

Quotes Against Disablism

One from every blog appearing on BADD would be good.

The Language of Disablism

We witness against it.

BAD BADD 2nd May

I AM INCONSOLABLE.

IN ATTEMPTING TO ADD AN UPDATE, I LOST THE ENTIRE BADD POST.

I DID NOT SAVE IT ELSEWHERE

I CANNOT FIND IT ANYWHERE.


May 2nd Update (see 19 - Quotes below)


Post Posting Editing Postscript:


The post for BADD was written during the neuro toxic drug down days. Today, now that the drug is clearing my system, I see that it is more negative than I feel today. So to celebrate BADD I now also celebrate the Good. Thereafter the BADD continues.

It is a glorious spring day and its May Day. I live in a lovely part of the world, and I can sit outside and enjoy it. I live in my own home and I live in a country where, eventually, the state will provide. I have a low, but guaranteed, income that is just sufficient. My expensive drug regime does not cost me anything. My mortgage was paid off by my medical insurance. The Motability scheme has sourced a government grant to enable me to have a wheelchair accessible vehicle. All this I have time to enjoy on good days, because I do not have to be in paid employment. I know it is not as easy for many people with impairments who live in this disablist world.

BADD CATEGORY: Personal Journey

Just pulling out a few threads from the tangle ... and hanging them on the Goldfish's categories.

AND THERE IT WAS: GONE.

Postscript: Now here it is: FOUND

Swings and Roundabouts

www.art4all.co.uk

Today was a 'day off', but as I happily no longer have to work 9-5, it was planned as a day off from my particular daily grind. I needed to get out of the house and away from the stack of files that support my complaint about Social Services to the Local Government Ombudsman.

My P.A. was booked and it was "anyone for liquorice icecream?" and off we went ... but it rained so instead of the icecream in the farm's lovely garden, we diverted to Kingston Lacy for a pot of Earl Grey and a big slab of chocolate cake. Well, I told you I was celebrating didn't I !

"Whaaaat ?! No Earl Grey,in a National Trust tea shop. What is the world coming to. Or chocolate cake ... I blame the hordes off the tour bus ... but the cheese and chive scones were scrumptious. Once those were polished off, the rain had cleared leaving the azaleas brightly washed and the avenues of trees and acres and acres of park land a welcome freshly greened space on which to rest my weary eyes.

I had found myself a bit tearful and shaky mid-morning. What's happening here, I mused. I can do it, I have it sussed, I've coped with much worse than this. But, no, giving myself a good talking too didn't work this time... I find that even though in my head I think I am all o.k., the physical symptoms show I am not. I found that I am, actually, quite scared. Not scared of what I have done, in a regretful 'oh my god what have I done' sort of way, by contacting the Local Government Ombudsman, but scared because I know that my Lupus was triggered by the Employment Tribunal scenario. Involving the 'big guns'. Stating my case, proving my case, having my case accepted and ruled on, officially, by officials. Then becoming very ill when it was all over.

I am rambling, I have lost the plot a bit, the plot I started out with under this title. Gain some, loose some, I think. Yes, I remember ... fighting the good fight and all that, so feeling shaky about Social Services but cheered by the National Trust who have come up trumps.

Three years ago I (politely) wrote on one of their 'Suggestions and Comments' cards that their published map of the grounds, picturing routes and features, showed that their wheelchair accessible route around the parkland did not meet up with their dog walkers' route, so how was a wheelchair using dog walker, or a dog with a wheelchair using owner, going to access their facilities ? "Oh, no we hadn't thought of that" said the very helpful lady at Reception - that a wheelchair user might also have a dog. That a dog might also have a wheelchair related job to do. I heard nothing more.

Last year I requested a meeting with their Estates Manager, which was very helpful, and we did Badbury Rings as well, checking accessible gates. At Kingston Lacy they took my suggestion of a route to link the wheelchair paths to the dog walking routes, and laid a plastic heavy duty mesh as a trial. Last summer it was fine, passable in a bumpy sort of way, but the grass soon grew over it, and no one else seemed to be using it. This season, (fanfare ... ta dah ...) the route I suggested is included officially, on their published map of the grounds, as a wheelchair route and as a dog walking route, linking all up very nicely indeed ... and they are cutting, and keeping cut, a wide swathe of grass so it is visible on the ground too. Well done National Trust. I happily pay my annual subscription to the National Trust to have this safe haven where I can trundle along whenever I need some peace, space and calm.

I returned home to find a hand written note pushed through my letter box. I give it in full, so you can get the full effect:

Dorset County Council

26/4

Dear Sally

So sorry to have missed you today.

I was looking forward to catching up on old times with you.

It seems ages since I saw you.

With best wishes

H..... (B....)

This from the big boss lady at Social Services, who had written two weeks ago asking if she could "... pop by, just for a chat ..." My response had been "read the 20 page letter sent yesterday to (your underling)." That was the letter in which I had stated I was frightened, anxious, exhausted, unable to cope with any more stressful meetings.

The only contact I have had with this big boss lady in seven years was when (1) she visited me at home to persuade me not to act to protect disabled people from being manipulated (allegedly) by a paid outreach worker at the charity I was a trustee of, which charity was part funded by social services, so they had a legal responsibility, (2) when I expressed an interest in addressing the lack, in this county, of an advocacy service for physically disabled people of working age (which fell on stony ground), and (3) when she was called in by another 'Community' organisation to stop me going to the police about the male (alleged) 'stalker' from whom they had not (alledgedly) protected his targetted single female wheelchair users (including me), preferring (allegedly) to quietly let the community initiative dissolve (allegedly), wasting (allegedly) thousands of pounds (I saw the accounts) of public funding (allegedly).

Well, would you have felt intimidated by the big boss lady from social services wanting to chat about old times, in these circumstances ? I am, and I was unable to stand when I read it, literally, so I know that this is having a serious physical effect on me.

So I wrote ....

" ... your wish to visit me at home, for a "chat" feels intimidating and inappropriate, when I have had enormous difficulty getting a professional and timely response to my disability needs under Fair Access to Care criteria. Yours sincerely"

.... and drove off (before the beta blockers had taken effect) to post it in time for the 5.30 am collection at the main post office, so it will arrive on her desk in the morning.

So that I can now relax ... and take the neuro toxic drug MTX this weekend, knowing that when brain be-fogged and mood-depressed, I should be safe from anything that is likely to, metaphorically or literally, rise up and attack me.

This is what we, we crips, we bloggers, do, when we need a hug. We blog. Dammit

This too will pass.

EDIT: This is the second installment of the SocS saga. This first installment is here and also labelled SocS under older posts. Yes it has been going on for some time.

Finally ... At Last ... After much Consideration ...

I have, Finally, At Last, After much Consideration,

made my Complaint

about Dorset Social Services

to the Local Government Ombudsman

in the form of

14 pages of text answering their standard questions

(and let my MP know)

(but not Social Services)

Now, put the kettle on, and most importantly

DON'T PANIC SALLY, DON'T PANIC

its o.k. really it is, to complain, and right and proper.

All is Not sweetness and light

My blog over recent posts has not reflected the whole of my life; why should it. No-one needs to know all the problems, and I need an outlet for the Sweetness and Light that is around my life. However, I now need t0 redress the balance; not for sympathy (although that is welcome!) but for the record.

I have had two falls in two days. The first wasn't too bad, in its effect on me although I was afraid for the laptop, but it should not have happened. Yesterday's fall was spectacular and frightened me. More than the bad fall last November, a few days before surgery, which caused me to hobble for two weeks. I fall because of my complex physical, cognitive and sensory disabilities. I fall because of physical fatigue and dizzyness. I fall because I do not have the use of an indoor wheelchair.

Today all my joints are jarred and I hurt in places that are not even bruised. I was on the floor for a longish time before I could crawl to a chair. I was in the chair a long time before I could move and sort myself out. The fear I felt was more than the pain. Once the shock had subsidised I felt angry. And anger is such a good thing when it is translated into action.

I have fallen because my request to social services for wheelchair access in the home made in April 2003 (yes, not a typographical error, it was 4 years ago) has not yet been met. This delay, as regular readers may recall, is despite involving my MP, despite the NHS wheelchair service assessing an indoor wheelchair as necessary over two years ago, despite agreeing an assessment of my eligible need with the County Council for loan funding, and the District Council for Disabled Facilities Grant. Despite the Fair Access to Care criteria imposed on local authorities with social care responsibilities by the government. Despite the government guidance to local authorities on Housing Adaptations for Disabled People.

Last November, a short while before the skull surgery, I had an enormous meeting in my home with three people from social services (my OT, my social worker, and a new bod, their boss), one (lovely supportive knowledgeable) man from the district council who decides disabled facilities funding, and two from the organisation that is now contracted to manage the schemes because social services are no longer capable.

Three months prior to that meeting I stated that everything had to be finalised and handed over to the organising organisation (!) before surgery, as I could not guarantee being able to deal with it afterwards. Such has proved the case. Cognitively I have been incapable of dealing with the complex situation. Shortly after the surgery I received a letter from the new bod at Social Services that was so full of such ginormous errors and misunderstandings that I could only weep with frustration. A month later I wrote and told the new bod he was wrong and causing me stress and acute anxiety. He replied he was right. I did not reply. Silence.

Until I fell yesterday. For months I have been afraid of contacting social services, or anyone else. But now the fear of falling has overtaken that fear. Today I have not taken the weekly low dose chemotherapy that controls Lupus, because it also renders me brain-incapable. Instead I have written (and posted) a 20 page letter to the new bod at Social Services explaining all that he should have read from the file of previous assessments and agreements, and copied it to everyone else and asked them to act. I have documented the falls and blamed social services and stated I can no longer deal with the stress and acute anxiety that the process of achieving disabled facilities is causing me. I have stated I cannot keep doing their job for them. I cannot keep on keeping on.

Next week I will consider contacting the Local Government Ombudsman, which I have been too afraid of doing so far. Now I am more afraid of falling. Again.

Normal service of blogging will be resumed as soon as possible.

I can't title this without swearing

So, ...., ...., ....ity, f...

My laptop is causing me physical problems, someone very kindly picked up my blog about it and posted it on The Science Forum but I cannot engage with that without ... physical problems caused by my laptop, let alone cogdysfunc to relate it and respond to further questions.

I cannot engage with it, because I am not taking the tablets that give me a few good days each week, which enable me to engage my brain and think things through.

I am not taking the tablets because I am going into hospital very very soon. Possibly. Maybe.

On the way out of the house to the hospital (a different hospital) on Friday morning, to see the Rheumatologist, I fell. Only two inches down a step, but OMG you should see the state of my foot. Three times the size and black. It hurts. The Rheumatologist saw it an hour later, before swelling and bruising and didn't think I had broken anything, but my driving there and back was a mistake. Rest it, she said. I am awaiting advice, as to whether this will complicate surgery. Or even postpone it. Again.

On Saturday the stair lift failed. My only loo is upstairs (until Adaptations and Disabled Facilities are built). Within two hours the technician replaced the batteries. Excellent service.

This afternoon the stair lift failed again. The technician (again, excellent service) said it was the motherboard. Should be able to get the part to fix it by Tuesday (Tuesday !).

So I have spent the weekend going up and down the stairs seated on my arse.

At approximately 8 am tomorrow the world will begin to sort this little lot out.

I may be back. Or I may be gone. Or I may just stay here until after Christmas !

Which would be quite good actually, because then I can go to all those concerts and carol services and exhibitions and films that I have not been thinking about because I don't want to face the world with a strip of hair shaved off and stitches across the top of my head.

My 'Bump' bless her, arrived this afternoon with her entire collection of silk scarves, for me to practice fetching arrangements with.

I would rather just stay where I am and let my foot heal (joke! foot - heel !) and watch the Rugby. With a remote control to let visitors in the door. With a laptop that does not fry my hand and arm.

But if I don't go into hospital because of my foot, I might miss Mac from Green Wing on his motorbike.

(Pic goes here ... except ... Blogger has joined in the general mayhem and won't let me upload a fabulous fantasy picture.)

An Ode to my Occupational Therapist

I explain something to her, very carefully, factually
and she says: yes, I see;
but I think she just has an emotional reaction
and acts on that
and goes to her supervisor
with the situation,
from her emotional perspective,
forgetting, or not presenting, my facts.

And her superior says:
but what about ....
and ....
and ....

And instead of OT replying
to her superior
with the facts I have given her,
she comes back to me
with the questions and the reasons
why not,
from her superior.

And my cogdysfunck has taken me elsewhere
so I have to find my way back
to what I have said before.

And her tone has altered
so that she is saying to me:
No, because ...
and I have to remind her,
if I can,
of my reasonings,
but I cannot due to tiredness,
cogdysfunck, fear, despair.

So I am overwhelmed
and cannot remind her that
I had told her the facts
and I haven't got the strength to say:
why didn't you tell your superior
what I said,
now and in the past,
to support my request.

And I feel doubly let down, because
First: she has changed her attitude to me
from first positive, when I felt relief
that she had taken on board
what I had said; to
Second: negative, questioning why
I think my request
should be considered.

It was reasonable, reasoned,
when first requested.
It felt unreasonable in the light
of her superior's questions.

Days later it comes back to me.
All the reasons, all the legislative back up,
So I write another letter
and do her job for her.

Do It Yourself

In recent days there has been an avalanche of forms to fill in and information to gather together onto bits of paper - and all remind me that my handwriting which I used to take great pride (before a fall etc) in, is not what it was; cannot hold a pen for long, so I transfer answers to forms onto documents prepared on laptop, but that causes pain until my

Whinge whinge, that sentence was too long.

Cut to the chase - I cannot blog or email without pain and I need to reserve laptop time to essential form filling. So I have not done much social laptopping. Laptop socialising ? Thanks blogging friends for comments and visits. I am way behind in reading yours and regret posts I have missed.

Update:

Motability are brilliant - in eight months time my current vehicle lease ends so huge forms to fill in, but this time their forms allow me to research and find the Wheelchair Adapted Vehicle to suit my disability needs and the requirements of my wheelchair. So I have been doing it myself - and having fun fun fun choosing my next WAV. I am thinking VW Caddy Life (imagine a Golf with sleek van on back) with cd player, tinted glass, auto tailgate lift but manual wheelchair tie down. I can dream, but some of it will become reality. The designs have improved since my last vehicle five years ago, so I am hoping I don't have to rely on a noisy rattling mechanical auto tie down on the vehicle floor. And Brotherwood's well thought out, or rather; well-engineered, converted lowered floor and wonderful tiny shiny smart ramp are a dream to use.

Social Services said some weeks ago "we will find you somewhere to live" when they move me out for the building works for disabled facilities adaptations. That has now translated into sending me forms to apply to the District Council housing list for temporary accommodation and to apply for housing benefit to pay the rent. I have been down that road before on behalf of someone dear to me and it was a nightmare, costly in time, energy, patience and disputed money. So I have written to SocS and said if I was well enough to deal with all that on my own I would be well enough to go out and earn a living and not need their help. I can only protest and hope they take back the responsibility. That I cannot do myself.

In discussing extensions and adaptations for disabled facilities, the powers that be have said they will not provide heating. That is daft I said, you cannot build on rooms and not heat them. Stale mate for eighteen months. Then I researched the Warm Front scheme and was visited by an assessor last week. Cut to the chase he said, after five minutes considering my needs; no gas in the village, expensive inefficient ineffective electric night storage heaters - you can have a grant for oil fired central heating. Combi condensing boiler. A Tech Surveyor will contact you. Just decide where you want the radiators to go. Jaw dropped in amazement. I am so used to having to argue and prove and evidence my needs I was stunned at his quick assessment.

Reality sunk in some hours after he left: a combi boiler means ripping out the hot water system off my little old AGA, which is crazy. And how am I going to protect my dear little AGA from the assessments of Social Services who would be much happier if I had a basic electric oven and hob. Those that have never had an AGA just don't understand the companionship of it, and those that have had AGAs but don't have them now are just plain jealous ! And the WF grant does not provide to remove the exisiting pipes or exisitng NSHs, or make good the bits of wall/skirting boards they inhabited. I cannot DIY that, nor afford to pay someone skilled to do it.

Do it yourself research has resulted together with lots of expensive phone chats with heating engineers. I have yet to sort that one out in order to have sufficient information to deal with the WF tech surveyor when he visits to assess. I am thinking keep the AGA to heat the hot water, just add radiators for heating because, I discovered on the internet, a combi boiler heats water straight off the mains and mains water pressure has to be increased - which is why I cannot flush the loo when I visit my bump (who has a combi boiler) - we did not know this is why - high water pressure = whoosing noise flushing the loo which risks triggering a Meniere's brain shut down episode. Life is complex.

The cheese planning skull surgery is planned for next Tuesday. I am writing lists of lists for me, my bump, my home helps, my PAs, lists of Lupus effects, lists of Meniere's effects, lists of drug effects, all on the laptop to take into hospital with me, so if anyone asks me anything, I don't have to get my cogdysfunck'd brain in gear, I can just scroll and click. Well, that is the theory. Doubtless it will all be out of my hands. Hopefully I will be drugged and not give a damn. And the regional Neurological central at Southampton hospital is so far away I don't expect hugs from friends visiting. All being well I should be home by Thursday.

I thought of putting in a link here to DIY trepanning, but the googled list brought up something quite gory, so I am sparing you that.

3 Year Campaign = 2 Days of Work

I cannot believe how the Universe works, don't the gods who organise these things know I get tired tired tired !

Regular blessed readers and commentors to my blog will know that I am currnetly campaigning on two fronts; one - wheelchair access adaptations to my home; 2 - wheelchair access adaptations to the great outdoors, no not my garden - to countryside and coast, village paths and town routes, under the Countryside and Righs of Way Act 2000 and Local Transport Plans.

Yesterday I had the biggest most significant meeting with Social Care and Health that decided, after three years, that yes IT will happen, soon, without delay, with funding, with my needs taken into account. SC&H will appoint project managers who will prepare plans, obtain planning permission, invite tenders, appoint contractors, get the work done. SC&H will find me somewhere to live for the three months it will take (I will believe that when it happens). All this has finally unequivocally been agreed. With no more faffing about by the Dorset County Council Major Adaptations Panel, in fact after a total climb down by the Dinosaurs who have not read the legislation and government guidelines. My Member of Parliament has been immensely helpful and his quiet polite interventions have no doubt had an effect on the Dinosaurs. I have yet to decided whether to let the Local Government Ombudsman take a look at my experience and the three years delay to achieving wheelchair access in my home, and decide whether to make their own recommendations to Dorset County Council on the workings of SC&H and the Panel.

Today, fulfilling the role Dorset County Council appointed me to three years ago, I have the most significant meeting of the Rights of Way Improvement Plan sub group of the Dorset Local Access Forum, where after three years of meetings and discussions, finally we meet to decide what we will be recommending for funding. Where I alone will be fighting for wheelchair access to paths, routes and access land that in their natural state are wheelchair accessible at dry seasons but are currently blocked by man made obstacles such as stiles and locked gates. Where I alone will be fighting for an allocation of the budget for wheelchair access, against the historical and numerical lobbying might of the other calls for funding allocation; from the Ramblers Association, Cyclists and Equestrians. Where I alone will be asking for an allocation from the budget for the Dorset County Rights of Way team to recruit a volunteer group of independent wheelchair users, so that there are trained volunteer wheelchair users who can be consulted in a way similar to those long established volunteer organisations, the Ramblers Association, the British Horse Society and Cycling clubs, who have all had years of volunteers lobbying for their causes - just look at the huge number of footpaths signs, and sign-posted bridle paths for horses and sign-posted cycle routes. Compare those with the number of sign-posts in towns, villages, countryside, coasts, with the wheelchair symbol on them. I am not alone in the greater picture; there are many other individuals and organisations (the Disabled Ramblers) campaigning for disabled access to the countryside and coast and accessible urban routes, its just that in Dorset to date a volunteer group of independent wheelchair users has not yet happened effectively. It will.

Why can't these important and tiring events be spread out a bit more - why do the most critical but exhausting meetings happen together, why oh why oh why.

Why am I blogging about it, rather than getting on with meeting preparation ? This is my meeting preparation, to get it straight in my head first.

Isn't blogging wonderful !

Setten Free ?

"Nowe do wee commaund our Sheriff of Disshire to releasen, setten free, and quitten, the ladye Sally ..."

I have been in some scrapes in my life, but the one over at Geoffrey Chaucer's Blog is the closest yet that I have come to being hauled before my betters and thoroughly chastisened. The life of a volunteer advocate is tricky indeed. King Richard (second of that name) had a go at Chaucer about his means of earning a living (interviewing) and my comment in support of Mr Chaucer led to a warrant being issued for my arrest. Ending my days in The Tower was a distinct possibility. I begged Mr Chaucer to plead for me and His Majesty graciously heard my complaint and took note of the Disability Discrimination Act. See link over to your right.

EDIT - LINK TO MASTER CHAUCER NOW COMPLETED - SEE COMMENTS UP TO 4th July for scary but exciting correspondence with royal personage.
(I know it is polite to add the link in this text so that you can just click and away to the relevant page, but I have lost a whole post while trying to insert and edit. Top-up excuse to the Lupus cogdysfunc is I am currently finding it difficult to concentrate with niggly tooth throbbing which began precisely at 5pm on a Friday when everyone has gone home for their weekend and which little throb has somehow found a direct link to 'up' the pulsing tinnitus in the adjacent ear. Just thought you would like to know.)

How I wish Dorset Social Care & Health were as quick as His Magnificence King Richard, to grant me FREEDOM to use my wheelchair, in my own home. Its not a Listed Ancient Monument like The Tower, for gods' sake.

There have been times during my three year battle with Social Care & Health that I have felt mildly threatened with consequences for daring to tell the Managers at County Hall they are not complying with Fair Access to Care criteria, nor following government guidelines in implementing Housing Adaptations for Disabled People. I have felt vulnerable, afraid, angry and isolated.

So what, I have been in that position before. The adrenalin of a just campaign has kept me going. I thoroughly trounced my employers in the Southampton Employment Tribunal and sacked my incompetent legal representative half way through, then found myself (scarrily) putting my own case to the Tribunal until I could find a legal representative to successfully finish it for me. Two years ago I stood up (sat down and wrote letters) to the Management of a Community Action charity and told them they had a duty to take action on the situation of a predator among my fellow disabled volunteers, and then I had to persist with the local bobbies to ensure they dealt with the predator appropriately.

My campaign for wheelchair access and adaptations to my home, has reached an interesting stage. I think there has been a total climb-down by the County Council SC&H Major Adaptations Panel (who decide the top-up loan to the Disabled Facilities Grant from the District Council) but the Panel Chair's last two letters, in response to my strong well argued points, have been so filled with the dross of his protestations that he was acting in my best interests, that it has been difficult to see just what he is retracting and promising. The meeting where my OT and her Boss will explain all, scheduled for two days ago, will now happen next week, so all will become clearer then, I hope.

Setten free ? Not just yet.

After three years of asking, until the specifications and plans are finalised, project managers appointed, level of grants and funding agreed and commited, and everything signed, sealed and delivered to my desk, I cannot believe it will happen.

But also, the SC&H front-line staff that will be responsible for getting things moving, helpful and professional though they are, are so over-worked with impossible case loads that I sometimes feel it is only humane to cut them some slack. Then I remind myself that during the three years I have been fighting for wheelchair access and associated adaptations in my home, they have been collecting quite significant salaries, having paid holidays, been supported by their line managers, gone home to (presumably) supportive partners/spouses, and used the office stationery and franking machines for postage. I have accumulated nine files of research, plans, meeting notes, lists, and letters sent, copied, and received, all paid for and posted from my disability benefits.

Enough whinging. I am thankful that I have had the energy, brain power and facilities to research and present my case. Many disabled people cannot do this. Many disabled people cannot access necessary support to fight for their rights, for their eligible disability needs to be met. There are few sources of support or advocacy. A formal complaints procedure is scary and not accessible to unsupported disabled people who have no energy left for a fight against professionals.

Timely, through the letterbox this morning, the newsletter Independently from the NCIL (National Council for Independent Living) www.ncil.org.uk. Many of the problems I have encountered in my eight year stint as a disabled person, are highlighted and discussed in the newsletters.

In the June 06 issue, under the heading Advice Desert is the quote: "It is not surprising that millions of disabled people, older people and carers do not know that they have rights when trying to get their social and health care needs met by social services and health services"

Enclosed with the newsletter is a questionnaire which asks for personal experiences to inform the Disability Rights Commission's support of the Independent Living Bill being introduced by Lord Ashley. The Q can be downloaded from the website. Please read it and reply if appropriate to your experience; either as a service user (existing or potential), volunteer advocate, or campaigner.

If the Bill succeeds and becomes law, and resulting legislation is properly and adequately funded, and the resulting changes are led by organisations of disabled people, (rather than by the grey haired, grey suited men and women at County Halls) then disabled people may BEGIN to be SET FREE !

Legal Sparrow cheeps in despair

Today I have received a letter from Social Care and Health, who have delayed my request for wheelchair access in the home for THREE years, advising that they have implemented Stage 1 of the Formal Complaints Process.

I have not made a Formal Complaint.

Instead I have asked my MP to investigate the matter on my behalf, because in my ill health and disabilities, the stress of a formal complaints procedure would exacerbate my two medical conditions, and risk a Lupus flare.

Two years ago a SC&H Team Leader acknowledged that there is no advocacy service in Dorset trained and experienced in Social Health and Care legislation, for adults of working age with a physical disability.

I do not think that the Service Manager at SC&H can implement a formal Complaints Procedure on my behalf without my consent.

I have replied that I do not give my consent.

I have replied that I trust that action taken without my consent, will not further delay my critical assessed eligible needs being met. Needs that were assessed as eligible by Social Care and Health in April 2005, fourteen months ago and two years after my initial request.

I have copied my reply to the Director of SC&H at County Hall, my MP, the District Council, my GP and my Rheumatologist.

And I have blogged it.

That is all I can do before my weekly neuro toxic drug kicks in.