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.

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

Thank you for visiting.

Blogging Against Disablism Day 1st May 2009

Today is

BLOGGING AGAINST DISABLISM DAY

1st MAY 2009

COURTESY OF THE WONDERFUL 'GOLDFISH'

AT

http://www.blobolobolob.blogspot.com/2009/05/blogging-against-disablism-day-2009.html

Disablism Killed the Muse !

The Goldfish's Blogging Against Disablism Day 2008

has arrived.

CLICK HERE

TO GO STRAIGHT TO GOLDFISH'S page for links to

104 POSTS so far and counting ....

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

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

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

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

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

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

EDUCATION ~ EDUCATION ~ EDUCATION

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

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

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

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

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

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

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

ADVOCACY ~ ADVOCACY ~ ADVOCACY

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

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

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

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

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

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

Tiptoeing In ... and out again ....

Quietly I come to say thanks for emails and, no, the Local Government Ombudsman
has not yet completed his investigation on my behalf, but is getting there. And, yes, I am a little paranoid about who from County Hall may be visiting here. And because I continue without disabled facilities and adaptations to my home, the laptop on lap is tiring and painful, but the latest gigantic steriod in my butt has made a big difference to stamina and cognitive functioning, so may as well use a bit of it here.


A new pic on my side panel ... does not represent me as I appear now, zooming along on my wheels, but taken many moons ago, (the specs say it all) with my Airedale.

1st May is Blogging Against Disablism Day 2008, so click on the title link in the post below, and join in.
See you there .... bye for now.

Goldfish has begun the BADD 08

For the third year, Blogging Against Disablism Day will be on 1st May 2008.

Created, nurtured and hosted by Goldfish.

Click the link title above.

See you there !

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

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





I used the Goldfish's categories for inspiration:

Abortion and Euthanasia

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

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

Access Issues (outside employment)

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

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

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

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

Art Against Disablism

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

Definition and analysis of Disablism

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

Disablism within Healthcare Systems

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

Education

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

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

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

Employment

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

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

Experiences through Family and Friends

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

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

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

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

(I swear this is verbatim)

General Thoughts on Disablism

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

Impairment Specific Prejudice

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

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

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

Being in a wheelchair brings its own specific prejudice:

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

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

Love and Sex

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

None English Blogs

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


Parenting

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

Poetry Against Disablism

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

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

Quotes Against Disablism

One from every blog appearing on BADD would be good.

The Language of Disablism

We witness against it.

BAD BADD 2nd May

I AM INCONSOLABLE.

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

I DID NOT SAVE IT ELSEWHERE

I CANNOT FIND IT ANYWHERE.


May 2nd Update (see 19 - Quotes below)


Post Posting Editing Postscript:


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

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

BADD CATEGORY: Personal Journey

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

AND THERE IT WAS: GONE.

Postscript: Now here it is: FOUND

Sally's Blog Against Disablism 1st May 2006

Disabled by my medical conditions,

or

Dis-Abled by society's attitudes and the built environment.

Hold those two opposites in mind while you consider the statements in this Blog.

Much of what follows is familiar territory for people with disabilities and this is my attempt to add to the awareness of those who are not.

ALWAYS REMEMBERING - IT COULD HAPPEN TO ANYONE

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Disabled - OR - Dis-Abled

My Wheelchair gets in the way of other people at the

Shops

Theatre

Cinema

Concert Hall

Bank

Hospital waiting room

Doctors' Surgery

Do I apologise for my wheelchair

Or should the built environment provide ample space for

wheelchair access, manoeuvring, stopping and parking.

I need to use the toilet just the same as non-disabled people,

but using a wheelchair means I cannot go the village hall for

craft fairs, pantomimes, art exhibitions, theatre groups, parish meetings,

weddings, wakes and parties.

Should I give up on joining in village events

Or should the Village Hall committee provide a wheelchair

accessible toilet(and a wheelchair accessible fire escape, just in case)

In the summer I cannot go for 'Walks'

in the countryside, because of stiles rather than gates

at the beach, due to lack of boarded walk-ways

by the river in the village because it is a narrow overgrown rutted path

I can't do these things because I use a wheelchair

Funding should be made available for my right of access

under the Countryside and Rights of Way Act 2000 where the

designation 'on foot only' also applies to Class 1,2,3 wheelchairs.

I cannot make my garden colourful and productive

Because I use a wheelchair and the ground is too soft

the incline too steep

the grass is too high

and the soil is too low

Because there are no grants for wheelchair

access in my garden, for paths, ramps, raised beds,

and no -one has yet invented a grass mower to attach to my wheelchair

My neighbour told me my garden is wasted on me

Because she is ignorant

Because I am disabled

I am over-weight

Because the drugs that keep me alive

contribute to my weight gain

Because I am lazy and eat too much

I sometimes look a mess

Because on means tested and disability benefits

my clothing budget is severely restricted

Because I can't be bothered to take a pride in my appearance.

I have not had a holiday for 8 years

Because I cannot afford one

Why do I need a holiday, I don't have to go out to work.

My neighbour's husband threatened me with his fist

when I proved he had damaged my property

Because I am a disabled female who lives alone

Because I asked for it

BUT LOOK ON THE BRIGHT SIDE ....

I employ staff who do the ...

housework, laundry, ironing, cleaning, shopping

You work 9-5 then have to do it all.

My mortgage was paid off by my medical insurance 20 years early

You have to work another 20 years before you have paid yours.

and last but by no means least ...

My husband left at the first signs of my disabilities

saying: " I need a wife who can support me in my career"

That was a real bonus to becoming disabled, which I only

appreciated once the shock had worn off.

My Physical Disabilities have been a golden pathway

to meeting many lovely, intelligent, articulate, amusing

entertaining, beautiful, wise

people with disabilities - look around all the other Blogs.

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It Could Happen to You - Help Change Society Now