Tuesday, 22 May 2007

Dragons, St George and other Bloggers

Paulo Uccello - St George and the Dragon c 1456
For Charles Dawson a real friend.

(and NO ...
I still don't know what was going on in the playground)

Also, Gimpy Mumpy, who is remembered with fondness.


Sunday, 20 May 2007

Change of Scene


This is where I would rather be; no, not in space, but on the Island of Crete. England in May is wonderful, but to be on holiday again on Crete would be soul restoring. Provided I didn't come across any of these:

Marine Style flask from Plaikastro c1500 bc - wwwou.edu

There were times towards the end of the holiday when one of these double axes would have been useful to keep my companion in check.

Ceremonial Double Axes - Herakleion Museum - ou.edu

Late Neolithic Pot wwwou.edu

At the Herakleion Museum were things that made me think of reincarnation, as a possible explanation for why they resonated with me. The shape of pots like this reminded me of one I had made over many weeks during an art course some years ago. I had found it mesmerising to make; it had been about 30 cm high, built up by hand, and batted smoothly on the outside with a piece of flat flexible wood. All the while I spent smoothing it, I had been thinking of the pattern I would incise on it; simple lines and spirals. When I saw this pot pictured on an Open University website I felt tingling up my spine.

But my favourite image of all is this lady, who I first found when I was about 11 years old, in the school reference library, in a book on costume. I was entranced, that females could be this powerful.

Snake Goddess c1500 bc Knossos Palace

Herakleion Museum - wwwwikimedia

In the Herakleion Museum I stood by the glass case in front of this 18 cm high figure and wondered at the sacred red colour painted onto the naturally black striped shells that had been placed around her. Perhaps they had been found with her in the Knossos Palace.

I let the swirls of other museum visitors pass me by and stood for a long time drawing her from various angles. She is very finely detailed; on her head sat on her cap is a bird, possibly Athena as an owl. Her black hair hangs in a heavy plait down her back; the maker finely modelled the curves of her back to leave a space in the hollow of her back where the plait hung free, finally resting on her bottom.

I purchased a museum standard replica, cast from the original and painted in the original colours. I have found the same shells in Shell Bay on the Isle of Purbeck in Dorset and they surround her where she stands quietly and privately in my home, a reminder of where I would rather be right now.

Ante Chamber to the Throne Room Knossos Palace - wwwou.edu

Saturday, 19 May 2007

Behind the Scenes


Before I began a blog, I used to read the BBC's Ouch! website. I even commented a few times, but my comments were never published. I thought, as one does, that there must be something I didn't know that was an essential ingredient in order to have one's comments published on the Ouch page. Ho Hum.

Before my year group began our three year Psychodynamic Counselling training with the Wessex Counselling Service (affiliated to WPF the Westminster Pastoral Foundation) we were given a few rules; all sensible, all grounded in the experience of those wiser and more experienced course Directors, who had trained many other year groups before us:

Rule No. 1 - All contact between members of the year group was to be within the boundaries of the self awareness group sessions that were the foundation of the training course. No contact outside of the training course, to discuss the content of the self awareness group, or other members of the group, would be tolerated. Anyone violating this essential rule would be dismissed from the course and their (substantial) course fees would not be reimbursed.

At the time we thought that a bit unnecessary, but we chosen few who had made it through the selection process were so relieved to have made it thus far, that we signed our agreement to that rule.

As the months, and then years, went on, we understood the Rule. We trusted the Rule and because we trusted the Rule, we felt safe and boundaried by it to explore ourselves, our relationships both in the training group and in the outside world, and to equate our own life experiences to the theoretical framework of our training. It was also an essential grounding in keeping strict boundaries around counselling relationships, so that when we began seeing clients, we were used to a contract based on this trusted up-front relationship.

We soon came to understand that to deal honestly with each other, and to trust to the process of the training, we could rely on the Rule.

Blogging is not so ruled. Bloggers can email each other behind and beyond what appears on their blog. Other bloggers of course, if not in the loop, know nothing of this, and can only deal with what appears on other bloggers' pages.

I am picking up clues that there may be a connection between my comments on Ouch never being published, my memory of the Rule, and early experiences in my blogging life, where I seemed to be actively unwelcomed by one blogger. I have remembered that discomfort and always been open, welcoming and encouraging to anyone who has come newly to reading and commenting on my blog. Thankfully no other blogger has repeated that early snub to my blogging involvement. On all other bloggers' pages, I have been welcomed and openly interacted with. It has been, and mostly continues to be, a joy.

Blogging is not an analytical process or a counselling arena, despite my tongue-in-cheek attempt to argue that IT IS SO. But in this disablist world it is a space where I, and many other bloggers that I have met and communicated with here in the blogosphere, trust the process of blogging and trust the bloggers met on their computer in that process.

Until something happens that shows that, in some arenas, there is far more going on between bloggers than appears on blog pages. That shows there is at work a personal process that is not up front and obvious. That is not necessarily what is seems.

Life is complex enough outside the frame of the laptop screen, without another blogger messing it up behind the scenes. This is where we come for contact, support, friendship, information, encouragement, fun, laughs, shared problems and shared joys. With two exceptions (and he has only ever commented once, and she has only ever commented once), I love you all and love your contact with me.
Stuff the rest of it.



Tuesday, 15 May 2007

It's all relative

News just in from the village pump, acquired during a brief welcome respite from the rain which allowed the sun, birds and parishioners outside for a brief spell. (This news item has been confirmed by the Goldfish.)

From 1st July all churches have to display A5 size NO SMOKING signs outside the entrance door(s).

I heard this from my neighbour the beef farmer/church warden/school governor/fellow trustee (too many jobs, not enough villagers to go round) who was incensed (although low church) by this latest example of the government telling him what to do.

He was incredulous, until I checked with him whether he knew that A5 was just a bit bigger than his wallet and not the size of that new fangled flip chart (A2) the Parish Plan committee used to draw spidergrams instead of listening to the Chair or having discussions.

That cheered him up enormously and we discussed whether the size of the NO SMOKING sign ought to be in proportion to the size or capacity of the building, so that A5 for the small parish church would equate to a NO SMOKING sign as big as my WAV outside the door(s) of Salisbury Cathedral.
Photo by Sally
Salisbury Cathedral West Front - completed circa 1265

Which led to us considering, not entirely seriously, how many languages Salisbury, as a matter of course, translate their signs into, and whether we are exempt from translating NO SMOKING into other languages, as the only languages regularly visited upon this parish are Dorsetshire, Grockle (as spoken by non-locals) and Incandescent Swearing.
~ ~ ~ ~ ~

On a more solemn note, I am despondent at the news also received today, that my new Wheelchair Accessible Vehicle will not now be delivered on 31 May, when the lease on my current Renault Kangoo WAV ends, and I have to wait until mid-July. They are still building it.
Much scurrying around by Motability, Brotherwoods, Car Insurers, MOT certificate checker-uppers followed. Disappointment from my Bump (who cannot withstand the noise of the wheelchair tie down bracket in my moving Renault Kangoo WAV) as she had already got her bucket, spade and shades ready, to hit the beach the very next day. Rain permitting.

Sunday, 13 May 2007

Asperger's, Anonymity and other ripples on the pond

Addendum 16.5.07 - see Postscript for experiences over on the other side of the pond.

I have a close relative, aged late 20s, with Asperger's. A was always the brightest kid on the block. Some years ago on work experience, before there was a diagnosis, A wiped the computers of the company providing the work experience, beyond and below the computers' factory settings. A was a bit of a genius, still is, with computers, but in those days was still experimenting.

Some years on, A has found an appropriate niche and is safe, as safe as any of us can be in this world, and enjoying life so far as a disablist society will allow. That means A has sheltered employment, sheltered accommodation and an accompanied social life.

A is still taken advantage of, usually without realising it until later, or when it is explained, then A is embarrassed and quiet and very hurt and retreats a little bit more. The retreats have always limited A a bit more, for A is naturally an outgoing social kind of person.

In written communication A is enthusiastic, optimistic, wants to share achievements wanting praise like the rest of us, expects the world to react in the open honest straightforward way A approaches the world. Except to close family, A never refers to the Asperger's condition; it is that part that A feels is very hidden and that is how the unaware world deals with A.

So - often A is used; by carers, by older, wiser, craftier, contacts. A can be manipulated without knowing it and has been used as part of a game plan by others, then is left to carry the brunt of reactions to the little game. A protests it was not so and is bewildered. Close friends and family have to wait until A's strong emotions have subsided a little so that A is open to having the scenario explained so that A can appreciate how it happened, to build a bit more onto the protective shield, from that experience.

A thinks, hopes, the humiliations of teenage years, the pre-diagnosis years, are in the past. A now has a public profile in the voluntary role A carries out and is well known in that circle, community and geographical area. A is more protected by the fact of having a public image, and gregariousness that suits that voluntary role.

We still have to look out for A, just in case A unwittingly, or encouraged by others; drops a pebble in the pond and is suprised by the ripples that come crashing back to the shore.

Andrea has written an informative and worrying piece on this condition in American society, and commentators affected have given their experiences. Read it by clicking on THIS

Labels: , ,

Don't panic Sally

Monday 14 May Update - see Postscript at end

Saturday night 11.30pm ish:

I may delete this in the morning, but for now I need to be here.

Loud rat tat tat on my front door, a few metres from where I am sat. It is 11.10pm

I am not expecting any one

It is dark in this quiet village, no street lights.

To bang on my door the person has to walk up my drive and climb some steps.

They have to know where they are going.

I phoned the police.

Police - are you expecting anyone.

No, and anyone that knows me, knows I do not answer the door after dark.

They will send a patrol car to drive through the village (which consists of one road)

Do I want them to knock on my door? How will they know which house (no street numbers) Its ok Miss Sally, we have ... er.. we have 'sat nav'. Chuckle, yes I know what you mean. No, its ok.

You relax now. Yes, thank you.


Maybe someone was banging on my door for sanctuary and now they are laid on the steps bleeding to death (I have been watching 'The Transporter' on tv!)

Maybe I will get up in the morning and find something dreadful waiting for me.

Maybe they are in the back garden waiting for me to react; its just open fields beyond.

I ring again, I want to say; yes please, please knock on my door and walk round the back and shine your bright lights up down and around every inch of my garden and the field beyond and and and and

ring ring ... putting you through ... sorry, all our agents are busy, please hold ...

please hold ...

please hold ...

still holding when
Five minutes later very bright lights very slowly drive up and down - full beam and then some, plus slow red and blue on top .... two, three, four, six times past my house.

please hold ...

Oh f... it.

11.55 pm Blogging it feels more connected



Why ?

Who ?

Who and Why ?

It is so quiet here, you can hear people walking past along the road, after the pub at the end of the village closes. I didn't hear anything until the resounding banging on the door - and it wasn't just banging, it was a proper knock on the door, five raps, in a normal rhythmn. (I am analysing this thing to death so I can sleep tonight).

But then, I was listening to Joe Cocker (he has aged !) on Parkinson tv, and he still rocks. But not loudly. I never have the tv loud (tinnitus) and if my semi-detached neighbours wanted to let me know it was, (because they always, always go to bed at 10.30) they could do what they used to do when my Bump was a teenager permanently listening to loud music, and phone me !

Its quiet, I don't know what who or why ... but someone did it deliberately.

Of that there is no mistake.

Did whoever it was stay around long enough to see the police car. That is all I could do to show them I'M NOT SCARED OF YOU.


You see, this is the only situation in which I wish I did not live alone.
This is one of many situations when I wish my Airedale was still with me.

I would have let her out and that would have sorted it. Grrrrrrrrrr. (dog knashes teeth)

but the when I had my big brave Airedale I never had any bother, never was concerned, and then, then, I could run.

As I said to the police on the phone the firs time ... I am disabled and I live alone.

That was enough ... to get a result with the police attending.

Is it enough ... to make this sort of thing happen.

Who have I annoyed recently ?

The teenager in the field (his grandfather's field) this afternoon, cutting patterns in the field with the sit on mower for 1 hr and 45 minutes. I retreated indoors.

Social Services two weeks ago - to the LGO. Nah.

That's it.

The Stalker was warned off by the police four years ago.

The violent neanderthal farmer living a mile away was nine years ago (although the calming influence of his father is no more, he died last month .... no that's ridiculous) (Although he did take a gun to his first wife and I don't even need to add 'allegedly' to that statement.)


go to bed Sally.

Take a beta blocker or two and .... no, that not a good idea with the amitryptiline that eases the pain so I can sleep. Ah well, make a another cup of tea, start another book.

Monday 14.5.07

I said I want(ed) a BIG DOG ... a friend sent me this cartoon with the dog barking at a tramp, but tramps, in my experience, are harmless ...

and following on from the comments and other email friends' advice, I have come to the conclusion that it was a speculative burglar, and not a nice one like Janet and Allen Ahlberg's Burglar Bill.

The Neighbourhood Watch Co-Ordinator is on to it, and the police Community Beat Officer is coming to see me to advise on security.
I still want a dog, but I will need a dog walker. The Cinnamon Trust may be able to help, but that project will have to wait until the building adaptations for disabled facilities are completed. Which facilities will have to take account of space required for a dog bed and feeding bowls (and toys) - oh can't you tell I am excited by this fantasy already ! Thanks Charles and Blogging Mone for your supportive comments and suggestions and email friends for support.

Thursday, 10 May 2007


Charles Dawson memed me for this award which I am chuffed about, but the link to The Thinking Blogger Award is so very slow it makes me wonder whether it is constipated. It is very reassuring to have feedback and so I am happy to make my own Thinking Blogger Award to the following five people who may display the Award on their page and move the Meme on to make their own Thinking Blogger Award to another five bloggers who make them think.

(CogDysfunck'd Sally Thinks: now I have to work out how to get the Award displayed on my side panel.)

A new-to-me Blogger found via Blogging Against Disablism Day: Andrea's BADD post about Colony Collapse Disorder. To quote the Queen Bee herself: "You can always tell you've learned new things or taken thoughts into new directions when your brain feels as stretched out of shape as socks you've worn for two days." Also a theory close to my heart is her post Cyborg Cool -v- Crip Pity. Every post is a gem - she has connected me to those times and makes me think into situations when I have felt society dis-ease in The Privilege of Being Clouted by a Cabbage.

I have been reading Wheelchair Dancer to connect to and think about how much I miss dancing. I was thrilled by the Ballet Rambert decades ago, and last year I experienced for the first time the CanDoCo dance company.

Wheelchair Dancer has expanded my understanding of the interaction between dance company members and how dance is brought to fruition. After the performance of the CandoCo I was entranced to see in the foyer on the trendy sofas, two young girls (presumably from a dance class brought along to the matinee) working through the movements of the wheelchair user when he was not using his wheels. By thinking how they would dance without using their body below their hips, they seemed to me to be doing what the Wheelchair Dancer has described in her posts about interaction between the dance company members. That had me thinking for many days.

Blogging Mone has expanded my thinking of the deaf community and how sensory impaired people are dis-abled by society. Also, the subject of deafness is connected to my very early childhood memories. My favourite Uncle's Mother was profoundly deaf and she had a very hairy black Scotty Dog who I remember sitting next to me and, sat down as we both were, he was as tall as the toddler me and he always made me sneeze. I know now he was just using me as a leaning post ... sorry I digress, the point is - as a very young child I was taught how to enunciate my words clearly and face her so that she (the Uncle's Mother not the Scotty; see last paragraph below) could lip read me. She always rewarded me with a smile and communicated with me, which I as a small child had to concentrate on, as her speech was different due to her profound deafness. At my very young age it was unusual to be given that much attention by an adult and I remember her for that communication particularly fondly. That memory would not have been recalled without Blogging Mone making me think about it.

A few years ago in an attempt to overcome the effects of my tinnitus in crowds, I thought lip reading classes would help. There I learned that lip reading is hugely difficult, yet it was being offered as an adult education class for one hour a week. Hopelessly inadequate but was it better than nothing ?

Also, I am indebted to Blogging Mone for her feedback of German equivalents or comparisons to my own posts' topics, and her valued comments always lead me to thinking on my own subject further, taking it on a stage further.

Spotted Elephant at The Bipolar View makes me think of things that perhaps a woman in her fifth decade living a relatively protected rural life in England, might otherwise never have been given the insight and links to think about. I am thinking: feminism, p.o.r ... .g.r.a.p.h.y (my attempt at thwarting such searches finding this site) . Also, I am indebted to her for bringing me back to thinking about my father's bipolar disorder which was mis-managed in the 1950s/60s and caused me a difficult childhood. Thinking on her blog has redeemed aspect's of my father's influence on me.

I wanted to include Quaker Dave, the Quaker Agitator but needless to say he has already received the Award, so its just going to have be Bumble.

Bumble, well I think about Bumble a lot. One week he is throwing his hay around in a very adolescent way, and the next he is orating with the best of them. Getting to know and understand Bumble through his regular Monday slot on Spotted Elephant's blog has expanded my thinking of the animal world, not just companion animals, but all animals that we interact with. They are thinking about us and figuring out ways to interact and communicate with us, either to protect themselves from us, or to protect us from ourselves. Dogs and cats are relatively straightforward in comparison, as are chimpanzees.

Thanks Charles !



Systemic Lupus Erythematosus
Lupus - probably the classic multi-system illness
90% of Lupus patients are female
No two Lupus patients are alike
Fatigue and joint/muscle pain are common
Patients may have few or many symptoms
Lupus is neither infectious nor contagious
Major organ damage (heart lung kidney liver brain) is quite possible
Lupus remains incurable
Early diagnosis can make a difference
(Source: Lupus - A GP Guide to Diagnosis
published by Lupus UK)
Light Sensitivity
Exposure to sunlight can result in a disease flare
Fluorescent lights are also a danger to Lupus patients
Energy saving lightbulbs - known as CFLs
(compact fluorescent lights)
can also result in disease flare.
More information from my earlier POST on this subject.
" ... someone you know may have Lupus ..."
Please sign the PETITON to the UK Parliament
by clicking on this word - PETITION
to ensure that Incandescent lightbulbs are not banned
in favour of low energy CFLs


Monday, 7 May 2007

Bowling Along

Me and the other crips went bowling this evening. Five of us; one wheelie, one with a prosthetic arm with a shiny metal gripper on the end, one partially sighted/partially blind, one partially deaf, and one with a stick (I am excluded from the stick category as I was sat on my wheels all evening until I got up with the stick to get to the wall to lean on while I bowled).

This was proper bowling, non of your fancy machines to pick up the pins. Wooden balls of varying symmetry without finger holes, wooden pins, wooden floor, and a wooden chute relying on gravity to run the returned balls to the bowlers. Chalked blackboard for the score. And the able bodied had to do all the picking up of the pins while we propped up the bar.

And I hit all nine pins with my second ball !!!


As there were fifty of us for the annual pre-bowling supper, and I knew of 5 crips, the other 2.14 crips must have been hiding their hidden disability.

I love bowling in Dorset, it was my first introduction to proper Dorset folk over twenty years ago. You can tell the proper Dorset folk by the way they bowl; standing still, on the line, feet apart, ball held in both hands, swing back the wooden ball between the legs then swing forward for momentum; ball released, hands in front and fall to the floor ! On purpose. Then return to your pint. Magic.

Home to take my weekly pills delayed for this special annual occasion. Now sat blogging waiting for the screeching tinnitus to recover from the cacophony of wood balls being flung along the side, and sometimes off the sides, of the bowling room.

Time to take my sore shoulders, stiff elbows and tingling hands to bed. Its alright, I assure them, you won't have to do that for another twelve months. And ... relax.

Friday, 4 May 2007

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 ?


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.


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.


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.

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Oh JOY (or is that just a tad too solipsistic ?)

Found it ... yes, my original 1st May post for Goldfish's Blogging Against Disablism Day.

Bloggers - if ever you delete something by mistake, or Blogger steps in and does it for you, do not despair. Via my site meter I found that the www had somehow stashed my 1st May BADD post and resurrected it. So I clicked and found it, saved it as a html file, then saved that as a text file.

All I have to do now is print it, then type it out again onto my blog. (I know that some of you will say: no, just paste it, but that has never ever worked for me, my brain, my fingers or my operating system.

I think it is worth doing and will, just as soon as ...

I will leave the original up because that has comments I value and treasure. If this is all getting a little too complicated, just leave me to bumble along on my own, very happily !

Thursday, 3 May 2007

2nd attempt at BADD - When the going gets tough ...

The Tough Go Shopping !

Oh I was inconsolable yesterday morning; trying to add something important to my BADD blog -quotes from others' Blogs Against Disablism, some beauties, and I lost the lot. I am only 50% certain it was my fault.

So I went shopping.

Not a thing that happens often in my 'dependent on benefits' life and like many of you, I use the internet whenever possible. I went back to the same shopping centre that was the scene of the disablist encounter recounted in my original BADD post but lost. With that memory, and aided by a big whopping 120 ml dose of steroid in my butt last week, I was feeling feisty and ready to sort out the world.

Clothes ... occasionally the occasion demands a new outfit, and the next one does, so this year's small clothing budget was about to be busted. Now because of the drugs that keep me alive and the steroids that keep my head above water, I am big so I have to use the big ladies section of the department store, and it is so depressing. Despite the quality of the clothes, they are crammed in anyhow, shoulders dropped off hangers and trailing under my wheels, and the assistant is a very very large lady who is too big to pick them up, and too tired to be nice and helpful, and I cannot be nice to her because she is not nice to me ... she is the one with the physical problem (I can feel her mind waves travelling over to me telling me so) and she resents having to do something to serve me when I politely ask her to pick things up so I don't mangle them in passing. Truly. So I was prepared for her.

She wasn't there, and the section looked as if it had been given a make over ... it looked just as smart, colour coded, accessorised and inviting as all the other fashion sections. Wow, inclusive fashion. With a very very thin (and small) assistant. Keep calm Sally, don't let hackles rise just yet, plenty of time for that.

First she observed me from a distance (I can tell with those eyes in the back of my head) and gradually moved in, towards me, tidying things on rails after I have been there ... grrr... and then came in close with the usual offers suggestions questions remarks, all the while clattering clothes on plastic hangers onto metal rails. (Remember, I can hear a pillow's noise.) STOP. Lady with a sensory disability here. Getting overloaded, may have to leave soon before I FRIGHTEN YOU with a Meniere's attack. Then you will panic because I will look as though I am having a stroke.

So, refreshed by all the BADD blogs I had read, I prepared to explain to her: I have sensory disabilities which means I get overloaded by noise and talk at the same time. And prepared to leave her to stew. She put her hands together ever so slightly, and bowed to me ever so slightly and apologised, quietly, and thanked me for explaining, saying she would leave me now but to please call her if I required assistance. Wow - Wonderful.

You have seen them, the lady lift operators in films of Japanese department stores ? This lady was suitably beautiful but didn't have the little white gloves. It clicked. So I smiled at her, made eye contact, and thanked her and hoped she would know I was sincere. She certainly was.

I did need her assistance, and together we found all sorts of wonderful suitable things on the high rails I hadn't even seen, sat down on wheels as I am. Then she saw there would be a problem with her section's small fitting room; explained she was new to the store that week and took responsibility for finding some one else she could ask if there was a larger fitting room. I followed.

And that is the point at which the two of us, fast friends by this stage, came up against racism, disablism and down right ignorance of the thick sort. An assistant, white English, non-disabled, proceeded to treat us both as ignoramuses. Did not treat us equally in her ignorance, for every time I spoke, she answered my question to the assistant friend. You can fill in the details from your own experience. My assistant-friend knew she was being insulted on the basis of her race and, as I spun round huffily and left the white English ignoramuse standing with her mouth open, realised that I too was insulted.

Then we found the floor manager, male, suited, executive (as in decision-making) power written all over him; walking in the same direction. Yes madam, I can help, and he moved all the clothes rails from the trendy tiny expensive designer labels section, to clear a runway for me from the general walk-way to the extra large fitting room. Excellent.

But I was on a roll, and had to go on to explain; wouldn't it be wonderful if I didn't create this mayhem wherever I went, and that there was always left a clear space through to the larger fitting room that was designated for wheelchairs. Tiny thing designer label assistant looked down her nose and turned away. Executive floor manager said: Certainly Madam. My assistant friend and I then returned to the business in hand and I ended up with twice as many garments as I had expected. She had listened to what I needed, (cool, comfortable, smart) and found the right things for me to try. So I paid (plastic fantastic) and she packed them neatly into the smallest possible bag to go on my foot plate; I complimented her on her attractive department and her supreme helpfulness and we parted the best of friends. Yes, I know she was on commission, but nonetheless, she put her heart and soul into making it an enjoyable successful experience for me.

As I left the floor, I met the Executive again, thanked him, heaped praise on the assistant-friend and her management of her department, and told him about the racist disablist ignoramus. He immediately understood my points, apologised for the poor attitude of the ignoramus, and said he would deal with her immediately. Of that I have no doubt.

And the moral of this tale is ... many English people have a lot to learn from other cultures, particularly the ladies, in shops. And I have learned and gained a lot from other bloggers' BADD posts.

I will leave you with a quote from the wonderful Katie:

"... treating people equally - allowing people to be treated equally - does not necessarily mean treating everyone the same. It means treating them according to their needs."

Postscript ~~~ 1st BADD attempt now FOUND

Wednesday, 2 May 2007

BAD BADD 2nd May





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.


Postscript: Now here it is: FOUND

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