Thursday, 18 July 2013

When All is Not Well - but Gosh its Hot !

When all is not well, time and professional help are what are needed.  Sitting in shade in a peaceful garden soothes.   When Carl Jung was overwhelmed he started building, stone by stone, and this was the result, on the lake shore, Bollingen.  It is still there and it is possible to virtually visit via the web live maps.

Onwards .... !

Gosh it is HOT:

Another hot day to get through ...
How could we ever feel cold
Or disbelieve the wind would drop,
Rain stop and shivering cease.

Cow slop, pig shit; its all the same,
Tractor spread, baked on tarmac,
Run through, passed by 
On wheels of car and trike,
Waved over by wilting garden roses,
Herbage, grass seeds, weeds.

Conversations begun, then stilted
Lolling in a garden chair,
Revived by chink of glass and ice
And a new neighbour's breath 
Of fresh air.

How could we ever mind the chill
Of running to the bin,
When now we stagger (have another gin),
Disbelieving it is thirty degrees, 
Again !

(Actually it was 31.5 on the village road today)

Tuesday, 4 September 2012

DLA and other Benefits - Going Round and Round

Silk Road Hares by Jan Wheeler
from beamers designs

I have been busy these last few ... YEARS ! ... filling out forms, answering assessments, fulfilling audit conditions, having my deepest fears and most personal needs investigated, written out, typed up, form filled, signed, counter-signed, copied to everyone, and one copy sent to me ... so that I could send it to the next agency that required it of me ... you know what I mean - you too if you are disabled and a benefit claimant.

Here is a tally in more or less date order, beginning in 1998 -

Incapacity Benefit ~ Income Support ~ Council Tax Benefit ~ Disability Living Allowance Care ~ Disability Living Allowance Mobility (BOTH AWARDED "FOR LIFE" in 1998) - Motability - Motability OT Assessment ~ Motability Grant financial assessment ~ Social Services (aka 'Adult Services' until they realised the connotations !) Care Assessment ~ Social Services OT assessment - Social Services Social Inclusion Assessment ~ Social Services Direct Payments Assessment ~ Direct Payments Audit ~ Social Services Adaptations Assessment ~ District Council Adaptations Grant Assessment ~ District Council Housing Benefit ~ Specialist Registered Social Landlord Care and Support social care assessment ~ ditto, financial assessment ~ NHS Wheelchair Service OT assessment ~ NHS PCT Personal Health Budget social care assessment ~ NHS PCT PHB financial assessment ~ NHSPCTPHB financial audit ~ Social Services Direct Payments Assessment of Disability Related Expenditure for 'Fairer Charging' (sic) assessment of my contribution (from my DLA care) to the costs of Social Services providing my care (yes, really !) (which they unlawfully deduct from my Direct Payments budget that I use to pay for my care !!) (another LGO investigaiton ?) ... and again - Disability Living Allowance ...? Again ? Yes my right to Disability Living Allowance is being reviewed, because the rules have changed. 'For Life' no longer means For Life.

I am fortunate that so far these many and various agencies have supported me, based on their assessments of my needs, yet ...

Think of the money all those departments would save if I were empowered to have ONE assessment, applicable to all.
Think of the fear, stress, shaky tiredness I would be saved if I did not have to keep doing this.
Thinking at 2 am in the dark ... what if I am deemed capable of work ... on the basis of my being capable of filling out the forms !!!
I am too ill to work.
It has taken all my available capability, after sleep, food, personal care, dog exercising (essential social inclusion and in place of a fire alarm - my current argument with social services 'fairer charging' (sic) financial assessment of disability related expenditure), yes, it has taken all my capability, to complete the DLA form. A form of 57 questions, 21 of which I had to type out, filling one sheet each, to adequately describe my situation.
And that is being replaced next year by PIP assessments. Will they even ask the questions that are relevant to my needs?

Its a lot of money - public money - spent on keeping my head above water, yet the tides and floods that threaten to pull me under are of their making. Prior to the welfare reforms of this Coalition Government, I felt confident in my right to this amount of support but now, to save money, they decided to question my right to support and social inclusion.

So now my confidence in the fairness of the system that supports me, that supports all dis-abled people, has gone; all is shaky.

I am sure I am not alone. In all this form filling. In all this worry about the future.

What can we do. I think at times even my social worker despairs. Maybe even my independent support worker despairs. And I am sure even my specialist RSL despairs of never again being able to support someone such as me into independent living.

There is one light being held aloft in the middle of this dark tunnel as I tramp my way through it ... the NHS Personal Health Budget. We all wonder where the money is coming from. But it has enabled me in quite astonishing ways, not least Psychotherapy, depth psychotherapy, not GP Surgery based short term counselling. I trained as a Psychodynamic Counsellor, so I know what will keep my chin up.

The crazy thing is, many of my PTSD recent triggers are coming from individuals or organisations that are in that list above, even one who I thought the Local Government Ombudsman had finally 'shut up' for ever, but no, up she pops again. Another story. Another battle. Another situation where there is no independent professional advocacy to sort it out with me.

At least I don't have to go and live with my mother (which would have been my only option just a generation ago) - and, really, to date, so far, as far as we know, there is no danger of me being carted off to the Work House and made to sing for my supper, or scrub floors.

Don't quote me on that, when that past terror becomes our future reality. You read it here first.

Maybe I am just getting too old to be optimistic. At 59, only a year to go before 'retirement' age - oops, forgot, they moved the goal posts ... another 4 more years, so 64 is the new 60. Which means I will be of 'working age' when PIP arrives next year for us all.

DLA ~ Dearly Loved Allowance. Who would have thought I would think so fondly of you.

Sunday, 22 January 2012

Dear Mr Direct Payments Financial Assessment Authority (Copy to Social Worker)

Supportive Lion, Wilton Parish Church, Wiltshire

Dear Mr Financial Assessment Authority (Copy to Social Worker for info)


Thank you for appreciating the medical necessity of postponing my appointment with a member of your team to 2 February 2012 despite the requirement for this Financial Reassessment to be completed within fourteen working days of 2 June 2011.

I am confident my SocialWorker has made you aware of my circumstances, not least the delays to completion of disabled facilities and adaptations to my home. However I was distressed at your threat to withdraw the Direct Payment service I receive if I do not comply with your requirements:

" ... I have now discussed the case with your Social worker, her Team Manager and the Locality Manager for North Disabilityshire and they are all in agreement that if the Financial Assessment is not completed by the date of the proposed visit ... we will give you notice that your Direct Payment will be withdrawn ... "

It is not in my nature to be a person who avoids their oblligations, commitments or responsibilities. It is distressing to be addressed as such a person and, sternly, told of the persons who are lined up to reinforce that view of my nature.

It is the nature of my progressive disease, ill health and resulting disabilities, to interrupt, slow down and make difficult, my day to day living. Your department may as well address that sterness to those impairments and disabilities, though I doubt they will retreat, no matter how stern your wording may be.

It has always been my intention to fulfil my legal obligations first, so far as my cognitive dysfunction will allow, before I have any fun, time with friends, social inclusion, but I am ruled, indeed regulated, by the needs of my ill health and resulting disabilities, which I have no choice but to submit to.

I do not need stern letters to be persuaded of my obligations. Threatening to withdraw services and thereby making my specialised staff redundant is not helpful in my documented medical conditions.

I expect there is legislation that allows services to be withdrawn if a service user refuses to comply with the requirements of your department, but I do not expect it applies where a service user is unable, dis-abled through ill health and resulting circumstances beyond their control, to comply.

Yours truly

Sally Leo
Head of Disability Options to Say No,
North Disability Shire.

Monday, 9 January 2012

The Sky is Falling In (DLA and Benefits reform)

IF the sky were falling in that catastrophe would affect 100% of the population, including lazy and/or mendacious MPs, government ministers, bankers and other ankers, together with those readers of the daily 'popular' 'newspapers' (sic) who read inaccurate alarmist stories (yes, stories not facts) and think that those of us dependent on benefits are somehow taking advantage of the system, to their detriment. As if we had the spare energy to defeat the mighty machine of DWP/HMRC and all its tentacles.
So, the sky is not falling in and we, the sick and impaired, are on our own.

Some capable sick and impaired people are DOING A LOT ABOUT IT, so sincere thanks from this old(ish) bird who can't do much at present, except report it here. Tweeting is beyond my capacity. (Pun intended.) Please click on the link below, follow their links, and do what you can to STOP THE SKY FALLING IN !

Friday, 6 January 2012

While I sleep

While I sleep
The Badger recreates her world in mine.

Prevented by barriers placed on her pathways,
She makes new problems of maintenance for me.

Thwarted only by pliable plastics
Her paws shift wood and brick and flint,
Shoulders prise open fences;
Thin green screening mesh
And bin liners of leaf mould are ignored.

She grunts in my sleep while, undisturbed,
I dream of hares and tortoises.

Sunday, 25 December 2011

Christmas Day - Lunchtime

Hare in Winter ~ Deirdre Mackay

Christmas Day ~ Lunchtime

The Rook said: Its very quiet today
as the Partridge rurred its way
over the hedge, leisurely.
Pheasants, left over from the shoot,
took time to survey their surroundings
and the Swan swept on.

I think, said another Rook,
this is the day they all stay away.
Its quiet in the wood, the Badger's out,
the Fox is unharried
and the Hares are square dancing.

(Its the day the Mother remembered the Christ Child
as she cooked lunch
and they all stayed away.)

I know, said the Rook, today is the day
they all remember the Light that we acknowledge every day.
Today, then, we can say
Goodwill to all the race of Man.

Silk Road Hares - Jan Wheeler

Saturday, 4 June 2011

Elderflower Cordial tweeked and without thunderbugs !

This is my second batch of elderflower cordial and my second blog about the process. My first blog - Cordial It Is Not last week (scroll down, or link on right), was lack of citric acid, and Charles kindly commented on his own experience of being taken for a mad bomber. Anyway, the citric acid arrived via the postman and off I trundled on the Tramper (link on list on right) and gathered forty heads of elderflowers. Brought them home in a large plastic bag which I deposited, opened, in the kitchen and made a cup of tea and sat outside under the oak tree gazing over my borrowed landscape of fields down to the river, listening to the peacocks, house martins and lambs, none of which were mine, so borrowed soundscape too. Bliss.

This blog post is also my instructions to myself on how to manage the whole process, a Tired Person's recipe and instruction, for next summer, when Lupus cogdysfunk'd I will probably have forgotten what a success this was, and just how much sugar solution I got on the door handles, keyboard, floor and clothes.

So back to work .... back to a kitchen window black with thunderbugs .... eeek .... (sorted) ... now to deal with the flower heads. And I rinsed them, which dealt with most of the thunderbugs, and dealt with most of the flavour also, as the rinsing water was a stunning bright green with floating thunderbugs, so I threw it away ! Mistake. Anyway, twenty four hours later the steeped flowerheads were drained through muslin which caught all the leftover thunderbugs as well as the flowerhead mash. Although the resulting cordial was lovely, it tasted of lemons as much as of elderflowers.

So the answer to thunderbugs is ...

Firstly RINSE the flowerheads carefully, individually, time-consumingly, in a litre of filtered water in a clean glass bowl, dunk and vigorously swish around and drain in a colander placed over another bowl to catch the precious drips. The water will gradually turn bright green - this is from the pollen in the flowers. This is the flavour source. It is Precious.

Secondly STRAIN the bright green liquid through a 90cm square of muslin folded into quarters, that is four thicknesses, held in a seive, into a clean glass bowl. All the thunderbugs will be held back from the liquid in the muslin. Keep this liquid. Rinse off the muslin and bid goodbye to the bugs as they swirl down the plug hole. Launder the muslin without detergent and air dry indoors.

Thirdly ADD this litre of precious liquid to the cooled sugar water to make up the total liquid required by your recipe. It will have turned from bright green to muddy yellowy green with a sediment, as in the bowl in the picture above, so stir the sediment before pouring the liquid.

Fourthly FREEZE the resulting cordial, using plastic water or juice bottles and plastic ice cube making bags for individual portions (2 cubes to a glass of water). Freezing solves all the possible problems of moulds and explosions. It may cause problems of chemical transfer from the plastic into the liquid, but I am trusting to the food grade of the plastics I use.

This was a successful answer to the thunderbug problem for me ... only 1, yes 1, thunderbug escaped into the liquid, and was easily fished out.

This is my tweeked recipe for 40 elderflower heads to make 3 litres of cordial. I don't like to use so much sugar and maybe next summer I will experiment with less, but until then:

2 of 90cm x 90cm muslin squares
2 large glass bowls, a very large pan with lid, large seive, colander, large wooden spoon,
40 elderflower heads, size of your hand, or equivalent in smaller heads
3 litres filtered water
2 of 500 gram packs of fairtrade white sugar
200 grams of unrefined golden sugar
88 grams Citric Acid powder (order online unless you want to be treated as a potential threat)
2 large oranges
5 lemons unwaxed

First Day:
Bring 2.5 litres water to boil in large pan. Remove from heat, add sugars, stir to dissolve with wooden spoon. Cover pan with clean cloth, leave to cool. Collect elderflowers. Rinse and strain as above. When the sugar water is cold, stir in citric acid to dissolve. Add the pollen water and sediment. Wash the fruit and thickly pare the lemons, add to sugar water, then top and tail, discard these ends and then finely slice the fruits and pop into the sugar water. Top and tail the oranges, thinly slice and add to sugar water. Stir. Add the elderflower heads a few at a time and stir round. The pan should be full. Bring up a few fruit slices to sit on top of the elderflower heads to keep them in the liquid. Cover the pan and set aside somewhere cool for 24 hours, stirring occasionally and carefully to minimise splashes of sticky sugar water.

Next Day:
Put the clean muslin unfolded in sieve over a large glass bowl, the muslin to overlap the bowl.
Carefully tip the large pan of elderflower heads and fruit in the sugar water over the muslin in the sieve. Gather up the corners of the muslin to form a bag in the sieve, lift sieve clear off the cordial in the bowl, and let all the liquid drip through the muslin, squeezing the last drips.
This is your cordial. This liquid feels like water when splashed, but it is very sticky and gets everywhere. Cover the liquid while you deal with the elderflower head mash; into a plastic bag, tied to keep out wasps, binned. Rinse the muslin to remove anything left, then launder as above.
Then jug the cordial into your preferred storage, plastic bottles (not more than two-thirds full) or ice cube bags, and freeze immediately, saving some to drink immediately. Defrost bottles overnight in the fridge, keep refrigerated and drink within twenty four hours ... this should prevent any moulds forming and prevent anyone blaming me if they ingest toxins. If frozen in ice cube bags, just pop two frozen cubes of cordial into a glass and fill with cold water still or sparkling, or white wine if your medication allows alcohol.

Enjoy. Preferably outside in a warm breeze. In the tree shade if you too have Lupus.

Tuesday, 31 May 2011


This time last year this elderly lady came to stay with me for her retirement. Although she had known me for the whole of her adult life, it had been as one of a crowd ... she knew my scent and my voice, so when I collected her one early morning in late May, she was trusting, but very unsure of where I was taking her. Being bathed on arrival didn't help. But her first breakfast was her favourite raw meat and biscuit and so began the trust in this stage of life, gradually finding her place was as top dog in a household of none, and a companion in me who understood her needs and who spoke a language familiar to her.

Confidence grew indoors and out. Initially she believed I was emptying this little space to provide a dark shelter for her, but my priority was sorting out the stationery cupboard, which she turned into a game, the first return of her sense of humour.

The grass is greener over the other side of the hedge, and the scents stronger, and this day she discovered that front paws on the low wall gave her a little height advantage. One evening, out for the last piddle, she began the tone of bark that was calling my attention to something, but I only had vision, not her scenting nose, so I could make nothing of it. The following morning's walk along the far bottom of that field brought us both into the scent line of a fox, and I'm sure that, at that point, she looked round and up at me, saying: Told You !

This bush flowered for the first time yesterday which, at the end of May, is a whole month earlier in the summer than when I took the photo at the end of June last year. Then the fresh dusty concrete wheelchair accessible path held little scent, but owl droppings under the oak tree were always worth a sniff.

High summer passed quickly in a succession of her first discovering and then eating wild strawberries, gooseberries, redcurrants and finally apples. The berries being carefully and daintily picked off the bushes within reach of her teeth, the high apples waiting for them to drop. First the green hard ones, just testing really to see if they were ready to eat as they fell, then testing her patience until they got bigger and tastier, finally the excitement of finding a new fall each morning and getting to them before I did. Daily walks became, for her, slow progressions, as I stopped the Tramper at each location of blackberries along the hedgerows, her views across the fields stopped by the by-now high maize crop, her quiet waiting rewarded with a handful of the gathered fruits.

She discovered beer, in glass jars, left on the ground by the Morris Dancers one evening when we returned home from a long cool late walk, and found them in the pub car park. She was used to men standing around drinking and talking, but when they started jingling and jumping and flinging handkerchiefs around, she climbed up and hid on the Tramper footbed, safe between my knees to peer round the Tramper's front to see what all the noise was about.

Over the summer she got fatter, lost her trim waist, enjoyed toast crusts after my breakfast, vegetable leftovers from my supper and further supplemented her diet of meat, biscuit and berries with crumbs of anything dropped during food prep in the kitchen.

With the autumn came longer exercise, walking up behind her friends but never letting me out of her sight, secured by the extending lead to me, and secure in the knowledge that she would be going home with me to her comfortable retirement home.

An early fall of winter snow brought treasure to the surface - those forgotten apples that were covered by autumn leaf fall with their scent lost amongst all the other rotting vegetation. Now they were resurrected when the snow killed all distracting scents excepting those of the soft ruddy brown of well matured squishy apples - another feast.

Winter weather did not bother her and she shook off all attempts to put a waxed dog jacket on her back, even one memorable day when the temperature stayed at minus ten degrees centigrade all morning. That day I only managed to exercise her for twenty minutes on the Tramper down frozen lanes before I was seriously concerned at my fingers' chances of remaining attached to my palms. The gloves off just for a second to hand the camera to a passing villager who couldn't believe his eyes, never having seen a Tramper before.

During her retirement with me came something I hadn't expected, even though I'd had dogs before - the hound dialogue; over the months we passed from my use of words she was used to obeying (LEAVE IT !), onto her first days of learning: Go To Sleep; Toast !, and other such important information, through to one day I was thinking of calling her and she came back through the door and looked at me: asking, replying, as she did when I called her in the tone that was calling for fun, or an apple. What Mum ?

She died in January, at a very good age. Trusting still.

Tuesday, 24 May 2011

Cordial it is not - Elder is my favourite tipple

PRE-SCRIPT ~ There have been visitors to this blog page using the search term: thunder bugs in my elderflower cordial. Me Too !! So, after experimenting today (a week after the post below) I have the answer. So, please read this post, then go to the new post on my blog page for an update at Its easy to deal with thunderbugs in your precious elderflower cordial !

The elder is in flower, basking in the sun, the lemons and oranges are waiting, the Tramper is ready to go and .... Boots the Chemist are not being cordial towards their customers - down here in deepest Dorset they have taken over all the local independent chemist shops.

This really is the last straw ~ Boots reacting locally to considerations global, such as bombs and illegal drugs. Boots have taken away one of the many benefits of living rurally, that of independent shops. There used to be three chemists in the local town; all three have been taken over by Boots, who closed one. None of the Boots stores in any of the local towns I have tried have any stocks of a necessary ingredient to enjoying summer in the countryside.

Independent shops have local independent knowledge and are independent of the views and stock ordering protocols of large conglomerates. Local independent chemists know that as soon as the elder is in flower, locals will want to buy CITRIC ACID ... not for bombs (well, maybe bathbombs !) or for cutting in with heroin or cocaine, but for making non-alcoholic summer in a bottle.

Would I have been suspected of such nefarious activity, wheeling in with my smart sun hat and latest bit of jewellery ? (what a fab excuse to indulge in sparkly stuff ... Medic Alert !) A local independent chemist would have been able to judge my reason and sold me for the princely sum of £1.19 a little pot of this essential ingredient of Elderflower Cordial.

Buggeh Boots. Online it is. LINK

Just don't let it rain and ruin the elder flowers until I have harvested my 30 heads of creamy sumptiousness. We need the rain, oh how we need it and my water butt is drained dry so the beans and courgettes are having to put up with tap water, as are the birds in the bird bath, but rain will ruin the flowers, so please not rain just yet. Until the postman has delivered the means to the end result and I am sipping the heavenly cordial. So, actually, thinking again, not let it rain during the day, only overnight, as sipping inside out of the rain is not quite the same as sipping outside in the dappled shade amongst the flowers and birdsong.

For a recipe click on this LINK or go to

Thursday, 5 May 2011

Abused, Again, and too late for BADD

Two streams of thought from diverse sources have informed today's experience of abuse.

Firstly, the esteemed Charles Dawson, recalling his original blog, commented on the Goldfish's BADD 2011 post: " ... the abuse ... was nothing to do with you. The need to abuse is projected out of the personality of the abuser, onto the nearest available victim. You just happened to be there, in the line of fire."

Secondly, comments on tv programme from Lottery winners: that their good fortune attracts hatred, in all its diverse forms; threats, violence, robbery, vandalism, from neighbours and others in the lottery winners' communities.

No, I haven't won the lottery, well not literally although metaphorically, sat in my garden enjoying the view, I feel as though I have - I am exceedingly fortunate - not lucky because my good fortune has been hard won and earned, but relieved and at peace that finally, some eight years after first requesting wheelchair access into my home, I have achieved it. Thanks in no small part to the hard work by my social worker in finding a shared ownership housing and support organisation that could help me achieve it.

My lovely new wheelchair accessible home was hard won, and support from fellow bloggers through 2006/7/8/9 was an important part of my ability to cope and continue, eventually assisted by a Local Government Ombudsman investigation, to Fight the Good Fight, when no-one should have to fight against disabilist policies by budget fixated negative so and so's.

Anyway, today I discovered I have a jealous neighbour. Last summer I politely asked my neighbour to cut back their boundary leylandii hedge which is doing what leylandii hedges do. Eight feet high and venturing over a metre deep into my vegetable plot. The neighbour agreed, but didn't. Last week I asked the shared owner/housing and support organisation to act on my behalf and ask the neighbour to cut back their boundary hedge. Yesterday they sent me a copy of their letterheaded letter sent to my neighbour. Today, I learn, my neighbour rang the housing and support organisation that provides the lease for my shared ownership wheelchair accessible home and spouted confabulations and outright lies (and I say that in full confidence without the need to add 'allegedly' anywhere in that sentence). First abuse.

Second Abuse: I returned home late this afternoon, after the second of three medical appointments this week, to find a scary email from the housing officer at the housing and support organisation, listing as if fact, all the lies (and confabulations *) spouted by my neighbour today and warning me that such behaviour on my part is in breach of my shared-ownership lease.

Charles was spot on about the First Abuse: projected out from my neighbour's personality. The Second Abuse was the worst. I felt my home was threatened. My foundation. My Anchor. My Safe Haven. Because firstly the housing officer had given my neighbour the opportunity to abuse me then, secondly, passed the abuse on and built on it.

I have referred the housing officer's actions to the Director of the housing and support organisation, and called my social worker for advice. And taken prescribed drugs to stop the fear. And PTSD.

Tomorrow is another day and after the third and final medical appointment of this week, if the weather is as good as today, I will again take my mobility vehicle and camera down the meadow to the mighty river (pic above) and say to myself: This too will pass. Hopefully.

On a lighter note, which comparatively it is ... when I left home for the medical appointment, I left my OT in charge of a gaggle of men installing an automatic system on my wheelchair access door ... auto open/close/lock/unlock. This is the third day they have been invading my peace and sanity, hacking at my new front door and pristine walls and scuff-free threshold to fit it, but my OT was confident all would be well. As I turned onto the drive I said to my PA: two plips and I am in .... first plip (remote control) to open the vehicle rear tailgate to let me out in the wheelchair; second plip (remote control) to open the new automatic front door to let me into the house. Ha !

Another thing to sort out tomorrow and the wheelchair stayed in the vehicle. It is indeed fortunate that first; as I now have two front doors I could use the other one and second, that I can walk into the house !!!

I think its that which really gets to my neighbour.

(Mimi Cummins's blog for BADD and following comments consider the use of assistive technology and what I refer to as 'walking-wheelies')

(* Collins Dictionary - Confabulation: Psychiatry. to replace the gaps left by a disorder of memory with imaginary remembered experiences, consistently believed to be true. )

Sunday, 1 May 2011

Disablism - BADD says it all

Lots of thoughts, but not a lot of brain this month /this time round ... but others have, so join me in spending the day visiting.

For the brain tired, to ease your navigation, click on this coloured LINK

For previous BADD years' posts, click on the link word BADD below.

Thank you for visiting.


Saturday, 23 April 2011

In the Blues

Usually, the blues get to me from time to time - many reasons, all familiar, common even. Each one particular to me, and probably you too. They are different to the panics, when I fear it will all come tumbling down, because it hasn't now for quite some time and, so far as I can tell, it won't, because of all the its I know, none of them are precarious. Music and poetry are useful carriers, and I have in the past let Schubert's songs to carry me along. He knew his panics too, and knew they were coming to pass. Poetry carries deep feelings for other bloggers and sometimes, jolts in time, they resonate with ours. Thank you RM.

Easter has been tricky, a reminder of the darkness before the light ... though it now feels more mature to celebrate the light as our forebears did ... leaving behind the darker side of Christian beliefs, in company with those who believe its just short of a couple of millennia since the life of Christ was grafted onto older beliefs. Celebrated in my post Happy Eostre which I would now love to relive, so here to click on is the LINK. The comments to that from blogging friends are a joy.

This Easter I seem to have bypassed the sorrow and emptiness and leapt straight into a resurrecting spring. The weather, this glorious unprecedented warmth and light and joyfulness, carries me along. With the Tramper. Into these blues ... and out of the other sort.

(Old Blogger used to let me insert pictures wherever in my text I wanted to ... not now ! Does anyone know a way round current Blogger slapping them at the top, and not letting me click and drag to where I want them to be ?)

Testing out the Tramper's capabilities in prep for a planned eight mile walk with friends on another of these repeating bank holidays. The Tramper's manufacturers (click on this LINK) say thirty miles on flat tarmac, and I have whipped in for three hours over dry plough and through bosky glades, so there is some confidence to setting out today, alone, at the Tramper's Class 2 limit of 4 miles per hour - which I reckon is a good comparison to fit friends' walking pace. So today, for three and a half hours I circled high droves and blue woods, flicked the switch to 8mph for a quick dash past the smelly farmyard, then slowed and kept out of the sun along long rides through thinned plantations. Oh, bliss it was. Then I found myself at the end of a long walk I used to do with Airedale Sally, thrilled to be there again after fifteen years, forgetting the gate, the forbidding gate with a view of my WAV - it took me another half an hour to get back onto the bridleway that returned me, gateless, safely to my starting point.

Safety is good.


Friday, 25 February 2011

SCDS - Superior Semi-Circular Canal Dehiscence Syndrome

Natural sounds are not a problem, so the ripples of the river over a long forgotten ford, patterns of sound and light, are pleasant.

Man made sounds are a huge problem ... plastic bags rustling, air-con, traffic, crowds, amplified sound - but not acoustic instruments, so the orchestra causes no pain in the auditorium, until the cymbals clash.

Yes, its real. Its not me, its not emotional, stress-related, neurotic, histrionic or hypochondrial.
Its a named and recognised (since 1998) medical condition.

Its located in the inner ear, the superior semi circular canal - and I think I am right in saying that 'dehiscence' means thinning or holes in the bone, that surround the organ/s of the inner ear. Due to that dehiscence, sound travels inter-cranially - direct into the brain cavity, not via the proper channels - is it any wonder I get brain tired ! My poor brain ! And SCDS incorporates 'Autophony' and Tullio's Phenomenon.

What are REAL and ACKNOWLEDGED now are the sound-related problems that I have had since the early 1990s - that stopped me circle dancing, swimming in indoor pools (so not much swimming at all in the UK where its to to to c - c - cold to swim in outside pools most of year and in the sea rarely) ... and eventually singing in choirs. All noise related inhibitors to my favourite leisure pursuits, but I could still work full time, in a quiet environment. But then I got .... (or rather, I had a flare of what I was born with, but no one knew it .... ) LUPUS.

Its the Lupus - SLE - Systemic Lupus Erythematosus - that brought me the electric wheels, which was a great help with the SCDS / Meniere's Syndrome /Tullio's Phenomenon - related dizzyness.

My Goodness Me - what a list of ailments. But, actually, life is pretty good.

I have a lovely accessible home in a lovely part of the world and good friends, and just enough support from social services to make the necessary bits of life (not forgetting housework) work.

There are links on the list on the right of this page to support and information. If you too have any of these medical issues, and the links don't answer your questions, leave a comment below and I may be able to suggest further sources of information.


Sunday, 6 February 2011

Sally's Syndrome exists !

No, not a weird sea creature, but the canals and labyrinths of the inner ear, showing Sally's Syndrome, except I will never get to call it that, as it has been named already, but only as recently as 1998, first described by Dr Lloyd B Minor of John Hopkins University, Baltimore, USA.

Found by me after an incubation period of only one month, since my writing on 6 January 'In the Days Before We Knew ...', (click on post title on right hand side) when I bemoaned the fact that many crips have their own peculiar impairments and symptoms, unknown to the medics or anyone else. Writing that blog page must have set in motion some percolation of information through the universe, such that I have found a clinical description of one of my weirdest symptoms, which will profoundly alter the care I get from the medical profession, and support my care and occupational therapy assessments by social services.

Fanfare of trumpets, whoops of joy, general throwing of hats into the air ...

Superior Canal Dehiscence Syndrome with Autophony and Tullio's Phenomenon.

Thanks to The Meniere's Society's publication SPIN
Edition No. 70 Winter 2009 page 5 ~ Systemic Lupus as a known cause of Meniere's Syndrome
Edition No. 72 Summer 2010 page 14 ~ Tullio's Phenomenon
and also
Wikipedia page on Superior Canal Dehiscence Syndrome modified 8 January 2011
and also the Diagram of Superior Canal Dehiscence with Tullio, or alternatively, with Autophony, (I think I have both !) which with Adobe Flash Player turns into lovely coloured moving pictures, courtesy of Google Images at Delaware Biotechnology Institute, Michael Teizido MD.
(No, again, I cannot get that link to work.)

It has taken me four days to bring together all the various sources of information, dating from the Osteopath's description in 1993, through ENT, Rheumatology and Osteopathy investigations and consultations, and collate them into a coherent description of my symptom history.

None of this would have been possible, but for the three monthly treatment with 120mg of DepoMedrone pinged into my butt from a huge needle a week ago by the Rheumatologist. Within seven to ten days, it clears my brain fog, returns suppleness to my hands, and gives me the physical capacity to sift through documents, the cognitive capacity to read them, then the energy to sit upright at my desk and type it all up.

So I have written to my General Practitioner (GP), my Rheumatologist, my Doctor of Osteopathy, my social worker and my Occuptional Therapist, with eleven pages of supporting documentation, and closed with these remarks:

It is important and necessary to my well being that these symptoms are diagnosed and named. This is in order that I have the various diagnoses in writing for evidence for the many times I have to prove my disabilities for state benefit and grant purposes and investigations, to social services (DCC Adult and Community Services) and various other agencies and charities. State benefits and grants provide for my home, my wheelchairs and my wheelchair accessible vehicle. Social services support is essential for my day to day living.

I think my GP will be the lead in progressing this, and when I see her next week I will ask for a referral to an Otolaryngologist.

Progress !


Wednesday, 19 January 2011


Please click on this link The Broken of Britain

and add your voice to the outrage at this Government's determination to

remove essential financial support to people with impairments.

The Government think taking money from the dis-abled is the easy option

to address the deficit in the country's budget,

because they believe we don't have a sufficiently loud voice to stop them.

Then please go this PETITION calling for the Government to keep

Disability Living Allowance mobility component

for people living in residential care homes.

Thank You

You are invited to leave a comment that
you have been able to add your voice
to these essential campaigns and petitions

Friday, 14 January 2011


Kaliya Franklin in the Guardian writes to draw attention to the proposed cut to the Mobility Component of Disability Living Allowance for people living in care homes.

So, what if you are not disabled, you don't know anyone disabled, you will never be disabled, disability does not cross you path, your day, your life. The cuts are beginning to hit you so you think they should be fairly distributed to all, including the disabled; you think cuts to disability living allowance is only fair.

You are not alone. The Prime Minister thinks like you.

Yesterday in Parliament during PMQ - Prime Minister's Question Time - when he is questioned by other Parliamentarians - your MP and mine - on policy decisions or other things that go wrong - he made the telling comment on WHY the mobility component of Disability Living Allowance is going to be stopped YES STOPPED, REMOVED, DISALLOWED, to people living in care homes. He said (not verbatim) that as people in hospital don't get the mobility component of Disabled LIVING Allowance, it is right that people in care homes will be brought into line with that, and NO LONGER get the mobility component of Disability LIVING Allowance.

Beyond belief. That it has come to this.

It is such a huge infringement on human rights, that I can only think that all others who have NOT protested (be they MPs, or everyday workers, mums, brothers, friends, colleagues) must surely think, like the Prime Minister and all the civil servants who prepared his policy and his PMQ answers, that people in care homes are being looked after so why do they need the money.

Well, obviously it is not obvious to them, but it is to me, as I am disabled and my understanding is:

That people in hospital are patients, and are there because they are ill and, hopefully, being treated for that illness. Over simplification, not covering all circumstances, I know.

That people in care homes are there because they need daily care, beyond what can be provided safely or economically, in their own home. They do have a life beyond the care home. They are not inpatients, they are residents. In order to live that life, they need the mobility component of DLA - in order to get out and live their life as they wish to live it, within the restrictions inherent in their impairment, but NOT restricted, not dis-abled from social inclusion by lack of money to pay for the means of getting out ... the accessible taxi, the wheelchair accessible vehicle, whatever they need and need to pay for - with the mobility component of their DLA.

I have a tiny glimmer of hope - THE LAW - HUMAN RIGHTS - the legal right, the right in law, to a socially inclusive life.

Hopefully the legal eagles will swoop down on this. Other MPs will speak out. IMPORTANTLY - YOU will read this and do something to support the right of people in care homes to have a life outside of that circumstance of their daily living. You will click on this LINK and respond.

If this prejudiced ignorant change in policy is over-turned then the right to go for a 'walk' on the beach, in the rain, will still be possible - thanks to the mobility component of Disability Living Allowance !

Brian Rix, President of Mencap, House of Lords, writes in Saturday 15 January Guardian letters:

" I was shocked when it was announced that the disability living allowance mobility component is to be removed from those in residential care. ...

... My co-chair of the all-party parliamentary group on learning disability, Tom Clarke MP, led the "impassioned debate in Westminster Hall before Christmas [in which] MPs from all parties spoke of constituents who were terrified of being robbed of their freedom".

Despite the overwhelming evidence of the general disquiet at this malign proposal, the prime minister - during this week's prime minister's questions - appeared totally ignorant of the true situation. Answering Tom Greatrex MP, he said: "Disability allowance is an important issue and our intention is very clear; there should be a similar approach for people who are in hospital and for people who are in residential care homes. This is what we intend to do, and I will make sure it happens."

But do they not recognise [writes Brian Rix] that when you are in hospital you are ill and extremely unlikely to be allowed out to go shopping, for example ? ... Even those with profound and multiple disabilities want to have their freedom, but they are not ill they are disabled. The government may argue that their health needs are a problem, but they are not confined to their beds in an NHS hospital. They are free souls who wish to live their lives like others. To those who claim "we are all in this together", I would suggest this is being economical with the actualite."

Thursday, 6 January 2011

In the days before we knew ...

Do you wash your eyebrows ? Or your eyelashes ?

Thanks to medical equipment magic, we now have the technology to increase the power of microscopes so that they, we, see the little creatures that live on the hairs of our eyebrows and eyelashes, eating up all the dead bits of skin cells and such (and poo-ing out the parts they can't digest ?)! I don't know if we yet have the technological power to see the little creatures that live on the little creatures that live on our eyelashes, eating up all the bigger little creatures' bits of scurf, dead skin cells etc.

They don't wash off ! The microscopes can see the little hooks they have on their legs, clinging to our eyelashes. Enough. Don't give it another thought.

Isn't technology wonderful. Recently NASA have been working with a UK Uni (Bristol I think) and have discovered, (probably to do with space walking or some other such that I am sure wheelchair users would enjoy), that the inner ear doesn't only let us know where we are in space (up, down, leaning sideways, etc) but also that the inner ear controls the blood flow to the brain. "That's it !" I shouted, to myself: "That's my brain-shut-down thingy."

That was my eureka moment. And my GP's, who was equally jaw-droppingly impressed when I made the link with my weird medical condition that doesn't yet have a name, but will someday.

Background: my Lupus-related health problems are typical for this multi-system disease ... including pain and weakness and inflammation in soft tissues, and joint pains, and profound fatigue, and, and, and, .... and cognitive dysfunction ... and ..., well the weekly low-dose chemotherapy (Methotrexate) that I have been taking for the last thirteen years doesn't help much on two days a week when the side effects take over, but it helps the other five days a week, so I accept it. And fortunately I have a condition that systemic steroid injections really do help. So I carry on.

Until someone turns on a vacuum cleaner/drill/air-con/mobile phone trill within a few feet of me, ... and ... I look as if I am having a stroke. Facial muscles droop, speech disappears, slump in the wheelchair, peripheral vision gone, hands spasm into a claw .... oh yes, its quite dramatic, so I do try to avoid being in such situations and stopping the source of the environmental trigger to this reaction, and getting away from the source really really quickly (electric wheels essential) in order to recover. And the best way to recover, for me, is to quickly gulp down in strong mouthfulls, cold water, to release the block to the blood flow to the brain. Someone has to hold the drink for me. Then within a few minutes blood flow returns to the brain, face comes back, eyes come back, speech returns, hands and slumped body back on line and ready for action. Yup, I'm fine thank you. Onwards.

For years, I have been the one to label this odd reaction to noise and vibration - when, I have been told, I appear to be having stroke - as medical not psychological, not neurotic but medical, not attention-seeking but medical, mechanical-medical as opposed to psychosomatic. Real. Brain overloaded, getting wrong signals from the inner ear, can't cope ... shut down.

Over the years of following other bloggers I have found that many many people with impairments have struggled to get support; practical, financial, medical, because their impairment has not be named, cannot be classified, does not fit a label already existing in the medical dictionary. Therefore it cannot exist. And the person carrying the burden of the very real impairment, symptoms, pain, agony, distress, dysfunction, has to find their own way to survive.

Sometimes we are fortunate to find a medic who goes against this tide of negativity, and supports the patient, even though they do not have a label that can be written into the appropriate box in the forms.

My GP is one such star. She suggested I wrote to the BMJ British Medical Journal, 'Patients' Perspective' to describe my experience, and suggest the connection between Lupus, Meniere's and men in space/NASA's research. I will, when I have the energy and brain power to put it together much much better than I am doing here today.

My Doctor of Osteopathy also gets a gold star, even though he was the second one to trigger this reaction in me, because he worked out that it must be related to blood flow to the brain, and recommended strong swallowing to release the blood flow back to the brain. It works.

The first one to trigger this reaction to me, was the medic who tested me for Meniere's Disease. Squirting water into the ear under pressure. I had my weird reaction a few minutes later, on my own in the waiting room, and was ignored by the embarrassed staff, who left me to it for the half an hour it took me to recover. I was very distressed. In the middle of it I could not speak, see beyond a few inches, or move, but I was aware and could hear everything, so knew I could not be dead, yet.

Later at the hospital consultation with the test results, I was told that as I didn't have the reaction that would have proved M's Disease the ENT chap said there was nothing wrong with me and my reaction afterwards was none of their concern and not related. Wrong. I have subsequently decided, and my GP agrees, that I don't have M's Disease, but I do have Meniere's Syndrome, further complicated by Lupus. That the tinnitus I have had since my teens shows something not working properly in the inner ear, and in recent years is further complicated by the Systemic Lupus. So I have dizziness, tinnitus, noise recruitment, and hyperaccussis. I don't have deafness or the 'drop-attacks' that impinge on the lives of people with Meniere's Disease. And I do feel some responsibility for the tinnitus ... rock band 'Yes' loudly in Sheffield City Hall when I was about 17 and 3/4 years old ... forty years ago !!!

All this meandering comes back to the things the medics don't yet know, like the knowledge we have now, but didn't have before microscopes, about the creatures living on our eyelashes. Someday they will have a name for our weird and wonderful conditions that only we have, peculiar to our selves. Our various conditions will eventually, following research and more progress in medical diagnostic equipment, have a name they can pin on us. Then they will be much happier to take us seriously, and find a way of helping us.

Some day technology will catch up with our differing unique individual peculiar impairments and our realities will become real in the medical dictionaries and there will be a relevant box to tick on the numerous forms to be filled. Then mine too will get written-up and recognised and when it does I would like it to be formally named as Sally's Syndome.

In the meantime, Onwards !

Friday, 31 December 2010

From That to This - Landlords - Good and Evil

In the local and national news, the search for the strangler of a young woman in Bristol and whether the police will Charge her landlord, currently being held for questioning. Startling, the victim's flat is a replica of my Bump's while she was in that locality, as a post-grad. Not the same flat, just the same speculative builder's architect around the turn of the century developing that part of hilly Bristol. Gave me a jolt all the same.

When the young woman was first reported missing and her parents believed her abducted I said, to myself, The Landlord Did It !

POSTSCRIPT: 22 April 2011 ~ the victim's landlord, who was not charged and is reported to have had no involvement in the case has, I understand, today begun a legal process to sue the newspapers who speculated on his involvement in the murder. I am happy to record this on my blogpage.

My first experience of a Landlord was when I left home at just eighteen to work in London, in the early 70s. I found a bedsit in Putney in a house of 5 bedsits let only to single females, and the landlord lived on the ground floor. And did odd things - placed mirrors in odd places, such as opposite when one sat on the loo. Little things that were dismissed as dodgy, discussed amongst us single female tenants, nothing done about it. You didn't, then. Just like you didn't do anything when touched-up on the Underground, but accepted it, as part of life as female, then. Then the Landlord converted a disused back room adjacent to the garden door, into a laundry-cum-shower room. Again, mirrors in odd places - so full view of oneself in the shower. We females at the time felt he had gone too far this time .... the automatic washing machine was the enticement to use the other new facilities he had provided ... so we felt uncomfortable, and although we didn't talk about it specifically, I do not think I was the only one unsure of what spy-holes or two way mirrors he could have installed, and so he was cross we didn't use the newly provided shower and automatic washing machine, preferring the safety of the dark walk to the local launderette.

Decades later, looking for a flat to rent for my Bump in Bristol, I recalled my London landlord experience when Bump and I were interviewed by all sorts of dodgy seeming Landlords, usually dodgy in financial terms, or just plain dirty and dangerous - the rooms available for rental I mean. So we found a female landlady, not resident, with a flat with its own separate outside staircase and front door. Fairly safe. And she was. It worked well, and the architecture was lovely inside and out, just like that flat being shown on the tv news this evening. But my Bump could just as easily have found herself as his tenant. And the tv news are linking with an unsolved murder by strangulation of a young woman in the same area thirty years ago.

From That to This - from a Landlord experienced as Evil (allegedly) to the Good Landlord I have now in a shared ownership scheme for people with disabilities - and safe, despite the current cobbled-together government's dismantling of financial support for the impaired and dis-abled. Safe for existing scheme members that is. The shared-ownership scheme is no longer available to new applicants due to government cuts in mortgage support. That is evil in the wrong it does to the prospects for other impaired and dis-abled-by-society people.

The oak tree in the snow pictured above is on my garden boundary hedge of blackthorn, sloe and bramble. It has been there about 200 years and the hedge is an old boundary, separating occasionally flooded grazing from apple orchards. Just bungalows now, but the oak is a safe home to a thousand insects and many birds. If I can't afford to have the hedge cut this spring, and instead let it flower then fruit, I could be drinking sloe gin next Christmas !

This Christmas I was thinking of those parents in Bristol whose Christmasses will never be celebratory ever again.

Monday, 20 December 2010


Yesterday is probably going to be the only way and day I celebrate the feast of Christmas this year, unless we have another miracle .... a thaw !

So, to be able to sit in the Choir, singing for the parish church Carol Service, surrounded by Victorian wall mosaic in pink and gold, candle light and children's voices, was a blessing I was very aware of.

Waitrose couldn't deliver Christmas (as in that episode in "The Good Life"), and tomorrow's girly Christmas lunch impossibly impassable. Bump away with her Beloved on the 25th, and my nearest family claimable for Christmas are a day away in Yorkshire.

We have ten inches of wonderful whiteness and that's a lot for the middle bit of the south west (and I remember '63 in Derbyshire when I was only ten and the white stuff was higher than my wellies), so the countryside has ground to a halt. Also, since moving I have been declassified to a 'C' road, rather than the snow-ploughed and gritted Emergency Services route between major routes, that I was before.

Which is a blessing in disguise, as my Tramper was the only vehicle on the white road today, so I could photograph the white hill.

The Fairy Cake ? I left the Carol Service before sociable Tea and Cakes, courtesy of the presiding Priest, but was offered a plate of fairy cakes as I passed through the door to the snow ... which was wonderful, because as any concert-in-a-church-goer will know ... often there is a plate to Collect Money from you as you leave ... and being very-low-income-because-dis, it grates. So, I was blessed to be able to collect a fairy cake on my way out and, managing the hat, scarf, gloves, stick, handbag, the only place to put it was balanced on top of the handbag, and off I trotted. (Yes, trotted, as thanks to loads of drugs and better health, I can walk short distances, hence being able to sit in the Choir. Even when everyone else stood.)

So, balancing my Fairy Cake, I walked down the church path ...

... thinking about it later, did I brush off a possible introduction? I am so used to being guarded and shrugging-off flirtatious comments from men using the excuse of my visible disability to patronise (which annoys their wives, further isolating me from social interaction) that I had a quick response back ... but the well-balanced fairy cake could have been placed there by the Christmas Wishes Fairy to grant him an opportunity to talk to that reasonably attractive (yes, give me time and a plan and I can manage that) single 50-something lady who is also that mad-bat that trundles through the village byways on a scooter, dragged along by a beagle.

Did I ?

Sunday, 21 November 2010

Sally sallies forth

Where to begin ? .... at the End ! The Beginning is in all my previous posts.

Here I am, settled almost, in my lovely new home. This the dawn view from the garden.


As I sit here, chewing on Pontefract Cakes, the beagle is snoring and all is well.

Friday, 1 May 2009

Blogging Against Disablism Day 1st May 2009

Today is
1st MAY 2009

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Tuesday, 24 March 2009

The Things That I Can Think of That I Know

That the Local Government Ombudsman brokered a Local Settlement ... which Dorset County Council have yet to fulfil.

That it was agreed that I should have a Facilitator/Advocate to assist me to achieve disabled facilities and adaptations. Sorted. Beginning to work well.

That the Police Community Support Team are effective and do support single disabled females who are threatened (allegedly) by their neighbours (because I achieved a Tree Protection Order on their tree in their field) and who are frightened by their neighbours (allegedly) taunting them (me) with an air rifle, pointed at me sat in my wheelchair in my garden. In this idylic (allegedly)quiet little Dorset village.

That a couple of police in full body armour and armed with handcuffs and truncheons, knocking on the neighbour's door unannounced, and telling them in no uncertain terms, that threats and intimidation to anyone, including single disabled females, is likely to lead to police action -is effective. No matter their protests that they did not do anything.

That I then thought "to hell with this, I don't have to put up with it" ... and put my house up for sale.
That I then secretly thought: Thanks to those neighbours from hell, I have police evidence and social services support for a necessary house move. Secret no more now is it !

That I could not afford from my sale to buy a bungalow more suited to disabled facilities and adaptations, in a safe quiet community, closer to friends and family.

That the Housing Corporation extended the scheme for Open Market Homebuy shared ownership to physically disabled people through specialist housing assocations, and that those of us too ill to work and dependent on means tested benefits, get the rent and service charge to the housing association, paid through benefit entitlement.

That that is how it ought to be in a civilised society.

That social services staff have a job to do in assessing the needs of peoples' disabilities, and they fill their days doing that. And their weeks. And their months. And their years. That is what they are employed to do. That it takes weeks, months, years, to achieve assessments, and to achieve the disabled facilities and adaptations the service user is needing, does not seem to be relevant to their career.

That I have been waiting since 26 September 2008 for my (new, senior, Team Leading) Occupational Therapist to discuss with me the draft assessment she produced and I sent back with necessary amendments.

That I have sold my home of eighteen years, subject to contract. That I don't mind now, really.

That I have bought the bungalow of my dreams, subject to contract. (oh god, the wall paper; oh god, the carpets; oh god, the kitchen, oh for fx sake a lavender bathroom, oh nevermind...)

That the District Council Environmental Services department are very good at their jobs, and have (there goes my Lupus brain again, loosing words, cogdysfunk'd again).... referenced ? No., sentenced ? No., ..... sent....referred... Yes that's it .... Referred me to the project managers, who will carry out the technical survey of my dream bungalow, next week, towards work on disabled facilities and adaptations. Yes, next week. Because they are more efficient than social services.

That I can bypass (allegedly) the County Hall Major Adaptations Panel (who ((allegedly)) messed it all up in the first place which resulted in my decision to request the Local Government Ombudsman investigate the delays) (too many paranthesis/ees)...) because under the rules for shared ownership housing I can have a specialist mortgage (interest paid through Income Support) to pay for the stuff necessary to my disabilities that the District Council's Disabled Facilities Grant (up to £25,000) cannot fund, so stuff the Major Adaptations Panel and their illegal (allegedly) decision not to fund necessary adaptations.

That under new DFG (keep up) legislation, wheelchair access now has to be provided not just indoors (and into the indoors) but in the garden as well.... and not just wheelchair access to the garden, but to the appurtenances of the garden.

That an appurtenance is not just the rotary laundry dryer, or the shed, or the wastebins or water butt ... but also an appurtenance is the enjoyment of the garden, access to the apple tree ... the veg plot .... yeah, right, I will believe that when it happens.

That this fabulous user-friendly, diversity-supporting, housing association, let their shared ownership tenants keep a pet, or a live-in lover ! Sorry ... that tenants can choose who they live with ... a dog, a chicken or a sex-slave. Soorry, this is getting worse !!!. Get a grip.

That life does get better. Slowly.

That my Bump (keep up - she's now 30!) is happy.

That it is ten years since my health, and my life, began to get worse.

That it is eight years since I first asked social services for wheelchair access into my home.

That it might just happen.


That I miss blogging, but can't do it as I once did.

Until I get disabled facilities and adaptations.

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Thursday, 1 May 2008

Disablism Killed the Muse !

The Goldfish's Blogging Against Disablism Day 2008
has arrived.
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.


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 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 ...


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.

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