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 !

A small 1.9 on the Richter Scale

Living in Leicestershire over twenty years ago, I was woken early one morning by an earthquake. For a brief second the bed dropped then resumed its place. I said to then hubby: that was an earthquake. How do you know, was his only comment. (Those small telling slights). He went off to the office. Later the lunchtime local news said it had been a 1.9. At dinner that evening HE TOLD ME there had been an earthquake in Leicestershire that morning. Then I could not begin to even recognise to myself the enormity of the implications of what he had said. Implications for our relationship.

Update on the Legal Sparrow's fight for what is right:
My MP's initial holding response indicates he is very interested in the discrepancy between what SC&H replied to him has happened and what I have written evidence of has happened. A phone call from SC&H Occupational Therapist yesterday was a small development that I have yet to make sense of. I do not yet know what it means. I feel a mighty underground surge, pushed by SC&H, that will leave me feeling disorientated. Its a Thursday, so I cannot blame the weekend's neuro-toxic drug for my confusion.

I can blame the stress of yesterday's very odd morning with home help number two, which led to the two of us fighting (metaphorically) to see who would be first; her to resign or me to sack her ! As my 'bump' said - she was very odd !

I don't blog about my 'bump' who was merely a bump 28 years ago, but will say that she is a rock solid resource; indepedent, feisty, intelligent, funny, beautiful; all a mother could wish, except she too struggles, in her case with M.E. for seventeen years.

I remind myself that I am my own rock, but undercurrents beyond my control will always have the potential to displace me.

A Fine Company

We bloggers are blessed. We are entertained, enlightened, comforted, encouraged, educated.
We react with chuckles, chortles, sighs, curses, groans, giggles, wise nods of our heads.
We are in fine company.
We are among experts in other fields, faiths and disciplines, and we benefit from them.

Yesterday one of our finest was recognised and awarded for her work and influence on disability issues in her professional field.

Congratulations Lady Bracknell's Editor M.B.E.

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.

Not football

Now that our brief English summer seems to be over, I am so looking forward to the Rugby Union season on tv - brawn and brains.

Wait a minute - summer cannot be over, we haven't been singing in the rain at Wimbledon yet.

Legal Eagle

More of a sparrow than an eagle, but I have some small legal knowledge and some practical experience. For personal use only, not as an advice giver. Briefly I was an assistant in the back office, where I was quite happy researching disability discrimination cases in employment law, during the year I was able to work part time after my employment tribunal case against the town council, which made me ill. Correction: the stress of which triggered a condition for which I had an underlying genetic disposition. I had to fight for the pension as well. Always, it seems, anything vital has to be fought for.

Someone elsewhere voiced concern over the legal status of a blog, and a slight fear of being called to account for comments that put others in a bad light; usually officials with reputations and pensions to protect.

Now I have always been refreshed and encouraged by bloggers' fearless descriptions of problems, not to say rants (and I have ranted enough in my short blogging life) with service providers, and I have never given a thought that there may be legal consequences to our blogs. Not merely because we use pseudonyms but due to a innocent faith that this is what is understood by blogging.

I could be wrong, but I hope not.

Thanks to the Goldfish's link I found Mark Siegel on The 19th Floor - a lawyer in USA who writes of his confidence in blogging as it relates to a possible political life. I do not suggest that his post of the 7th June 'Good Government' relates to my musings, just that it set me thinking.

Hiccups

I am not sure that I am living in the same space as other bloggers. Has anyone else found blogger blocked since last week. Quaker Dave mentioned it, but noone (come on brain, how do you write noone!) no-one, is that right ? I am tired tired tired.

Sometimes I cannot get past Outlook Express, other times it appears a blogger fault, and I get an error message on the dashboard. For instance, two minutes ago it failed blogger access, now here I am. No rhyme or reason. I lost an entire post on Saturday, and one, possibly two comments on others' posts, didn't appear - I will assume because they were lost, not because I sounded inappropriate, but if I did, sorry.

(Edit 8 pm - Blogger advised Scheduled outage ... four days later)
(Edit 13.6.06 10pm Ceefax 154 2/8 - "Biggest security updates for Widows being released by Microsoft to fix 12 software flaws, one deemed critical already being exploited by malicious hackers". Maybe Charles was right, again !)

A helpful chap named Paul emailed about the bottom hyphen, and the Fn key, which was helpful. I will not attempt to act upon it, until I am less brain tired. I will reprint it here if requested, as it was not added to comments.

Bloggers excepted, I am anti-men at present :
Trundling through town in my wheelchair the other day I passed three business men (well, you know, suits, not carrying beer cans) and one looked at me and said "lazy bitch" ... I managed to get in a loud "bastard" in passing, without changing speed or direction. Then I started to shake, not obvious when you are in a wheelchair, and my hat hid my facial emotions. So I went home. Does this happen to men in wheelchairs ? I think not. I wonder if it is my independence and a certain style that causes them to want to bring me down to their level.

This cheered me up, from the letters in The Independent newspaper:
"Sir: Is it true that all the worst drivers are now required to display a white flag bearing a red cross?"

Plea .. se

~~ Please ~~ a request for help sorting out a daft little technical problem, see comment number 8 on my Necessary Gardening post. Then, when answered and sorted, I can delete this post and pretend it never happened !

Over the way from me

This came from part of a list of the wildlife observed from my garden:

Over my house, under my fence, under my eaves, in the field, in the tree.
Badger
Fox
Pheasant
Partridge
Hedgehog
Toad.
In the field, in the air, in the hedge.
Over my house, under my fence, under my eaves, in my tree.

Buzzard
Perched, still, on the telegraph pole, dive bombed by rooks, ordinary, everyday rooks.
Swan
Duck
Sparrowhawk
Owl
Woodpecker
Cuckoo
Rabbit
In the field, in the air, in the hedge.

Hare In the field gateway, sat upright, fore paws motionless raised,
black ears erect; eyes forward consider how I would go, then
slowly turned, unconcerned, and left.
Deer
Dragonfly
Mayfly
Maybug
Bat
Over the ground, over the grass, all just over the way from me.

Necessary Gardening

Through lack of an item of major inspiration, I have reviewed my week and found a theme.

One afternoon of this week, B and I spent in someone else's wonderful garden, in a small ravine in a fold of Dorset hills; a natural icy cold spring spilling into a man made lake and a mill race, trees, lawns, terraced herbaceous borders, unusual trees, ducks and ducklings. Chaffinches, warm sunshine, dappled shade, slight breeze, tea and cake. Bliss

Necessary Gardening - someone else's hard work, vision and expertise, necessary to achieve this paradise for a few short months of the English summer.

Last year I discovered the National Gardens Scheme. It was one of many results of the Expert Patients' Programme. I don't like that title; it is not what it says on the tin. I will never be an expert in my conditions, I leave that to the experts.

EPP via the NHS and I was sceptical. Six weeks through the six week programme and I was happy with the outcome; some had been assisted to work at managing the effects of their chronic ill health as much as possible, others had been helped to see they could do more; I achieved comfort with doing less. The work ethic was no longer appropriate in my case. I wasn't a recovering heart op patient who needed to exercise more. I had spent most of my fifty years doing what I thought others expected of me, and now I found myself thinking I had to now use all my available energies for others, as it was others' taxes that are keeping me afloat through benefits income.

So one of the outcomes of the EPP for me is to do more for me, use some of my limited energies for fun, me time. And I feel a lot better for it.

My last post was a plea against unnecessary gardening - to neighbouring obsessives who cut, prune, turf out and compost anything that is slightly faded, big, blousey, over-blown, living its life to the full to droop, wilt, seed, wither, die, shrink back into itself ready for next season. This natural cycle is anathema to my neighbours, who come from suburbia and bring their suburban views into my countryside. Hedges to them are privet, waist high. My hedge is a line of native trees; ash, sycamore (ok, a bit of a bully that one), hawthorn, holly, mixed with ivy and bramble. Their ideal is no shrub that they can't bend down to. Grass exists to be cut, weeds are not flowers in the wrong place, they are invading barbarians. Trees do not exist in their world, and they itch to cut down mine.

The gardens that open under the NGS are paeans to others' necessary gardening. Years of planning and planting, an eye for colour and form, transferring colour combinations from Royal Horticultural Society magazines into Dorset soil.

They are always popular. Families come for the afternoon to sit and play on other peoples' lawns, walk along their paths, grandads dozing under someone else's trees. One of the things we don't have in the countryside is parks. As though they are unnecessary. So unless you are a rambler, or have your own estate, there is little open space that is public. For wheelchair users this limits leisure time out of doors. The larger county towns and coastal tourist centres have parks, often survivers from Victorian philanthropist ideals that fresh air and exercise, sedately in corsets if you were female, were good for health. My childhood summer Sundays (after morning Sunday School) were spent visiting different town and city parks where the brass band my father played in, had been invited to fill the bandstand, and the park, with popular arrangements of the classics. Parks have paths. Very helpful for wheelchairs, only then they were a rare sighting. Now, each time I go out I DO see someone else using a wheelchair or buggy.

Next week I am using my limited energy to earn my benefit and disability income. A very long but enjoyable and interesting, day long meeting of the advisory committee set up under the Countryside and Rights of Way Act 2000. My presence in my wheelchair reminds my fellow committee members and the attending local government officers, elected councillors and countryside rangers and wardens, that there is now under the Act, a new fourth user group to add to the long established Walkers, Cyclists and Equestrians: the C123Vs.

Class 1, 2 and 3 Vehicles are manual and electric wheelchairs and personal mobility vehicles - buggies, Trampers, and the like. Used by the Disabled.

As I have said before: lift me over the stile somebody. Progress is slow because the Act is not backed by cash. My dream for this Disability Shire is to include in the ROWIP (Rights of Way Improvement Plan) gradually taking place all over the country, a review in all parishes of the rights of way paths, lanes, routes, open access land, to identify places where the land in its natural state in dry conditions, would be accessible by C123V users, but are currently blocked by man made barriers - stiles, narrow kissing gates and locked field gates. The Disabled Ramblers are the experts in this field, (along with hills, vales and mountains) and are recognised and consulted as such. Much as I adore the smooth ride that is tarmac, I don't want to see man made paths in the countryside. Just a gate I can open from the wheelchair so that when the ground is hard and dry, I can trundle down to the river, across the downs, through the orchid and butterfly filled ancient ramparts. Mother Nature's own gardening. Access to open space, wide vistas, open skies, is necessary for all.

Also next week, C is helping me with necessary gardening; so that the postman can get to the front door letterbox. A thank you to B and C.

And now for something completely different ...

Leave my canopy un-manicured,
let my branches grow undefined
that the birds may perch in my spaces.

Let daisies and red clovers
cover my grass skinned surfaces,
and buttercups and ladies smock
congregate at my edges.

Leave my stones unturned
for the slow-worm,
let the dense growths spread tables for slugs
to feed my toads.

Wild strawberries will be your reward,
fecundity will surprise you with shapeliness,
and bird-song will accompany your rest
from un-necessary gardening.