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

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.

Allegedly.

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

Until I get disabled facilities and adaptations.

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 !

Another Light Bulb Moment

Update 4 January 2008:
More problems with CFLs - energy saving compact fluorescent lights - are being reported.
See today's BBC news by clicking this LINK for more up to date information
and for information on 'Spectrum' the UK Alliance for (people with) Light Sensitivity, click on this LINK.

The following was originally posted in March 2007.






This is for the attention of people with light sensitive medical conditions, Lupus, M.E., migraine with or without auras, people who are old, people who don't feel well and don't know why.

Enter the CFL:

CFLs, low energy light bulbs, are a DANGER to the HEALTH of people with light sensitive medical conditions. Particularly LUPUS !

I hated these low energy light bulbs before I knew this. I hated them because they give off a horrible yellow glow, casting all into a gloom that is just enough to see with but never enough to be in. All sorts of organisations keep finding an excuse to send me free ones, to encourage me to be green.

These bulbs are marketed as saving £10 a year in energy. They last three times longer but cost three times as much to buy. I am insulated and efficient in all areas but light bulbs and I recycle everything that I can. I don't need to save light bulb energy, I need to be able to see what I am doing without risking a Lupus flare or Lupus face disfigurement. 'Lupus' is latin for wolf, and the Lupus disfigurement was described originally by the medics as in the shape of a wolf's mask.

http://www.nucleusinc.com/

I prefer the description 'butterfly' rash now used by Lupus UK. The malar rash is rare nowadays thanks to modern drug treatments. I don't have this aspect of Lupus, and that's the way I hope to remain.


In Lupus, and other light sensitive conditions, old fashioned incandescent light bulbs are safe. CFLs and Fluorescent light bulbs emit UV light, which is not safe for people with these medical conditions. (By the way, neither are infra red heaters which don't warm the space but heat a surface when the infra red rays hit the skin - making you feel warmer. In the depths of winter at Pantomime season, I have a burnt face if I forget to apply sunscreen before going to the village hall event, which has ceiling mounted infrared heaters.)

When the recent push to replace ALL, YES ALL, incandescent light bulbs with CFLs was announced by the government department that needed a sexy scheme to rescue them from the doldrums, I felt, again, part of the ignored minority. My friend whose severe migraines are triggered by CFLs (amongst other triggers) rang in a bit of a panic. Don't worry I said, the Lupus organisation will be onto it. Here they are: this from the latest Lupus UK newsletter, quoted in full:

SPECTRUM Campgain on Light Bulbs:
Four charities working for people with light sensitivity conditions have formed the umbrella group SPECTRUM to co-ordinate approaches to Government on low energy light bulbs. SPECTRUM brings together LUPUS UK, the XP Support Group, Electrosensitivity UK and the Skin Care Campaign. Many health conditions, including Systemic Lupus Erythematosus, can result in severe reactions to low energy bulbs (CFLs) because these bulbs are fluorescent rather than incandescent. SPECTRUM has written to David Miliband, Secretary of State for the Environment, to express deep concern about potential moves by the Government and European Union to force universal use of CFLs. (These were trailed in the Government's Energy Review published in July 2006.) DEFRA (Dept for the Environment Food and Rural Affairs) have responded to SPECTRUM's joint letter and we (we/the representatives) are due to have a telephone conference with DEFRA officials shortly. If you are concerned about this important issues, you may wish to write to your MP, MEP or to David Miliband. PLEASE NOTE : DEFRA have enquired what numbers are involved in the groups represented by SPECTRUM.

We will be writing to DEFRA

and our MP and add our names to the list of people whose lives will be severly affected, medically and socially, if CFLs are pushed harder and incandescent light bulbs consigned to history.

If you are affected, please contact the Lupus organisation above or your Member of Parliament, so that DEFRA can be given accurate statistics of people affected by CFLs, who cannot be ignored in the rush to be seen to be protecting the planet.

EDIT: Sign the Petition direct.

Update 4 January 2008 - The Petition to Parliament has now closed. If you are affected, please use the link above to contact your Member of Parliament and ask for her/his support for the campaign against CFLs. Thank you for your interest.

Revolution: nearly, soon, truly, yes; I think so.

http://eleganthack.com/

Being selfish today, in that I have spent precious capability to withstand laptop on lap and attendant pain- and fatigue- inducing activity, on reading a blogging poet FSJL. Often when reading FSJL on his Stanmore Hill blog page, I have found, pulled out from my unconscious, something felt but un-described until found in his poetry. A remarkable poet; daily his thoughts pour into perfectly formed poems.

In these short winter days when grey clouds add to the gloom as early as 3 pm, and the Christmas tree is blocking my access to the filing cabinet, printer and the 'to do' tray, I can prolong the holiday and continue to feed the senses. Food, drink, friends, old films; all are now a surfeit. So this today is Alone Time; now my Bump is back in her own neck of the woods, and I turn to music and poetry and prose. However, my brain nudged me to say that the next thing ought to be making sense of the events of the last few months. I have been, am still, afraid of the situation with Dorset County Council social services department. That fear used up my brain capacity, used up physical energy, depleted me.

Over the holiday when I have put aside everything labelled 'work', unbeknown to me, my brain has been working away at understanding my situation; working away much as the hard drive on the laptop does after an upgrade. Leave it with nothing to do for a while, and it sorts stuff, unbeknown, unbidden; just does it. When I next turn it on; the laptop and the brain, its slightly different, and working better. So, when I chose to feed the senses by reading some poetry, in a roundabout way, my reading of FSJL has made sense of my scary connection with Dorset County Council's social services department and my request to the Local Government Ombudsman to investigate what I believe is their maladministration of my need for equipment and adaptations for my physical and cognitive impairments.

Click LINK to Local Government Ombudsman.

In the bigger picture, beyond my own situation, I think I am connected to a revolution, of sorts, which I did not begin but am a part of, and thus may be picking up (through my scapegoat complex) negativity from those at Dorset County Council being jostled by the changes. FSJL, I read from his CV has a personal connection to a political revolution in the Caribbean. Reading his http://malvernmountain.blogspot.com/ blogpage 'Machievellian Moments ...' (June 8, 2007) led me to thinking:

There are parallels and instruction, here, on the British labour government's (itself founded, if not now a little floundering, on socialism) ideal and aim of self-governing and care-providing for 'disabled' people with FSJL's papers on the fight for independence by people previously governed colonially. Here and now in Dorset, the local tier of government in its social services department staff, are being forced to withdraw, through decreased central government funding, from their hands-on control of 'disabled' peoples' quality of life. Social Services department staff are being forced, by decreasing central government funding, and directives from central government, to hand 'their' budgets over to disabled people, to service users, in order that those (us) service users themselves may buy the services needed to live our own daily lives and enable our own social inclusion. (one of my clunkier sentences).

This revolution is very subtle and many service users may not yet have been touched by it, or not recognise it for what it is. Older, time served, service users are more likely to notice the revolution than younger or recent service users who may see it, correctly, in the light of what they would expect in this day and age.

(NB: if you do not think of yourself as a Service User; think again. Is it because you don't think you qualify for services; or social services department have told you you don't qualify for services? Think again, and get advocacy to challenge it. If you are not managing your day to day life (year to year ?!) or are isolated or excluded, or unhappy with the circumstances of your dis-abled life in any way, you are entitled to funding to get the equipment, services, and aids to social inclusion that you do need, Yes You Do. There is more to service provision that unpaid family and friends !)


Hints of the coming revolution are to be found in the Assessment of Need carried out by social services. Yes, 'carried out' by social services. Still the direction from central government seems to be worded to suggest that local government social services departments still have the power. But be encouraged: social services departments have to consult and discuss with the service user as an equal stakeholder on this Assessment. Stake your claim to this all you Holders of Stakes out there. The Assessment of Need is now NOT determined by social services staff, but as a temporary stage in this revolution, the subject, sorry, the service user has an equal say in the determination of the need. Finally, service users of social services will themselves wholly and independently with advocacy as needed, state their own assessment of their own needs. We will, in this revolution, I hope have as much clout and power in our voices and votes, as others in our communities have in the local politics of education provision, roads and highways, waste collection, police and ambulance and other essential services.

Stay with me here please; I am not a scholar and what threads and similarities are seen here by me, between FSJL's political analysis and my experience of changes in Dorset County Council's social services department, and social care throughout the country; may not be apparent in this blogged comparison.

But I am attempting to explain that I am encouraged that what seems a potential for entire revolution in social care provision, has its parallels in other fights for independence and self-governance in other spheres.

One of FSJL's points is that colonial rule led to education which enabled the populace to gain knowledge to understand their situation and fight, in words and action, to end the colonial governing of their lives and therefore to determine their own future and way of life. (Deep apologies to FSJL if this explanation detracts from his sophisticated writing on his subject.)

What we 'dis-abled' people lack is knowledge; of our rights, of legislation that provides for our rights. How often have established bloggers in the world of crip bloggers, come across a new crip blogger who is starting out on the same road that we have travelled (perhaps in a different time zone) and that new crip blogger is struggling with the same issues, blocks to services, outmoded and disgraceful attitudes from service providers. We welcome them, encourage and hold them in our hearts and minds; we tell them of our experiences, ways we found to get the essential services we needed; what words to write on the mountains of forms applying for basic funds and equipment.

All people ... who become dis-abled from social inclusion by whatever eventuality and currently find themselves dependent on a system left over from a paternalistic, charity-minded, workhouse ethic orientated, bureaucracy ... need education. This system may be changing.

But directives from UK central government to local government social services departments is not enough. Education of services users is needed. Crip Education. So that we know what they should be doing. So that we know when they are doing it wrong. So that we know how to deal with them when they get it wrong wrong wrong, without making ourselves ill, physically or psychologically, in the process. Knowledge is power.

But not every person who is or becomes dis-abled has the capacity; of time, health, energy, or confidence, to gain and use such knowledge. Then there is a place for a caring society to support them. Which is not the same as looking after them paternalisitically with charity and 'we know best' service provision.

So, quietly, without newspaper headlines, and even without very much discernible difference yet in our quality of life, there is change. The Revolution has begun.

Blogging is an essential cog in the wheel of this Revolution. Has it begun yet in the social services department of your area's tier of local government ? You are a stakeholder in this revolution.

~~~

Update: Just before the Christmas holiday, the Local Government Ombudsman Investigator emailed me with an apology for the lengthy time it is taking for him to investigate my claim of maladministration by Dorset County Council social services department. I am content that his comments show my claim is being investigated thoroughly and that the LGO investigation is doing what I could not do alone.

~~~

POSTSCRIPT: DCC has visited my blog - see 'Comments' below.