Thursday, 1 May 2008

Disablism Killed the Muse !

The Goldfish's Blogging Against Disablism Day 2008
has arrived.
TO GO STRAIGHT TO GOLDFISH'S page for links to
104 POSTS so far and counting ....

I began blogging way back when, when I needed an outlet for the creative thoughts that were swarming around in my head. That is how I began, tentatively, to give voice to the Muse. Then unexpectedly it changed; Charles Dawson, Blogging Mone, Spotted Elle and Goldfish arrived: WOW I didn't expect that - a response, and over the months others visited and are famously blogging along here and at the BBC's OUCH. It became, happily and entertainingly a crip-blogging world. More recent blogging friends comment and keep in touch and are linked over to the right. (If I stop to put in links, as I should and could but can't get my cogdysfunk'd head round just now, I would loose this thread of thought.)
So my blog became, unexpectedly, a daily source of support from other crip bloggers. I heartily recommend it. Without blogging friends I would have reached deeper despair long before I was able to see that the only way to get the help I needed to fight this dis-ablist society, to get disabled (sic) facilities and adaptations to my home, requested of the powers that be in 2003, agreed with them in 2005, not yet begun; was to contact the Local Government Ombudsman and let that investigation sort out Social Services.
I do not need to recap the handicapping capped budgets at County Hall here today. But I do need to record that without the support of blogging and blogging friends and contacts from all parts of the blogging world, I would not have felt it was right to fight the Good Fight.
I am not alone in fighting the Good Fight - the Seahorse (linked in the panel on the right) is treading a different route to a similar goal - and you may be too, or may be thinking it might come to that, or even you may be thinking that you are not entitled to help. How would you know ? If you do know and you are fighting, then blog it, or get in touch here by a comment, so that it can be recorded that there are others who are struggling, who have to use their limited energies in fighting the Good Fight.
All this fighting, researching, letter writing, having meetings; all take energy, that people with disabilities, chronic ill-health, impairments sensory or physical, or learning or mental health issues - just don't have to spare from the needs of their daily living. So something has to give. I have not given up blogging, but I cannot do it daily, weekly or even monthly sometimes. Until I get the facilities and adaptations in my home so that I am no longer dis-abled by the built environment and lack of equipment.
So, my argument is here, that dis-ablism killed my Muse ~ that soul-residing complement to my outer persona, that feminine aspect of the psyche that needs expression, for me, in writing creatively. I don't have the spare energy anymore. The pain from the laptop on the lap (no wheelchair accessible desk) comes quicker, stays longer, stays stronger. And all my writing energy and creativity is being used in keeping the Local Government Ombudsman's investigation at the forefront of my fight for my rights. And the rights of other service users of this County's social services department.


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

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

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

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

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

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

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


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

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

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

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

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

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

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Blogger The Goldfish said...

Excellent stuff, Sally. It means a great deal that you are able to take part today. :-)

Thursday, 1 May 2008 at 14:35:00 BST  
Blogger Sally said...

Thank you Goldfish. You are my beacon ! I know you are putting in an enormous amount of time and precious energy, into administering BADD08's good energy into everyone else's day. Over 100 people so far are thanking you and thinking of you. Exceedingly well done you.

Thursday, 1 May 2008 at 15:56:00 BST  
Blogger Never That Easy said...

What a great post: and your point that using all your energy to fight for what you NEED leaves you very little energy to do what you WANT is well met. But I think this post was chock full of essential information (and I took the quiz too: ugh... a 40!)

Excellent work!

Thursday, 1 May 2008 at 18:04:00 BST  
Blogger seahorse said...

A fantastic post, and your dream is a righteous one. Advocacy got me my PA, my stairlift and where I am now with the Health Commission.

And yes, disablism has muted your muse, but not killed her. She's just resting whilst energies are directed elsewhere. I know how precious that energy is and how frustrating it is to have it taken from you by such foul means. You are such a fighter, a brilliant person!

Thursday, 1 May 2008 at 21:17:00 BST  
Blogger Sally said...

Hello 'Never that Easy' - that score of 40 speaks volumes, and I hope you find ways of getting whatever it is that will make a difference. It should not be like that for anyone.
Thank you .. now to go visiting ...

Thursday, 1 May 2008 at 23:30:00 BST  
Blogger Sally said...

Hi Seahorse ... what a fantastic day this is. I hope every BADD blogger and reader benefits from this uplifting affirming day, not just today but onwards from today. We are not alone. Out there are many many more like us, each different, each experiencing the same obstacles to living our lives our way. Thanks for your continuing support ... I particularly feel uplifted knowing you are travelling a similar route, but you are doing that as well as being a full time Mum ! So, I am full of admiration.

Thursday, 1 May 2008 at 23:51:00 BST  
Blogger Maggie said...

Thank you for the link to the quiz. I was a little surprised to end up with a score of 44. Didn't realize how badly my life was affected - I think that you just kind of get used to not being able to do stuff, so don't think about it. If that makes sense!

Good luck with getting the adaptations that you need.

Best wishes from sunny Liverpool

Friday, 2 May 2008 at 08:37:00 BST  
Blogger Chris said...

Thank you for your post !

Friday, 2 May 2008 at 09:35:00 BST  
Blogger Sally said...

Thanks Chris ... have visited yours - so DITTO !

Friday, 2 May 2008 at 12:12:00 BST  
Blogger Sally said...

Thanks Maggie ... I read yours and saw the link to the 'ME not Psyche' protest. Another Good Fight to keep on keeping on with.

Friday, 2 May 2008 at 12:18:00 BST  
Anonymous Anonymous said...

Rock on, Sally. Great post. :)

Monday, 5 May 2008 at 19:52:00 BST  
Blogger Kay Olson said...

I'm still making the rounds reading BADD posts....

It's heartening to have been blogging as disabled bloggers sprung up all around, isn't it? I'm glad you're still getting sustenance from that, as I do, even when you can't participate as much yourself.

An inspiring post. Keep up the fight!

Sunday, 11 May 2008 at 04:59:00 BST  
Blogger seahorse said...

Hi Sally, thought I'd pop back and see how you are. Thanks for your kind words. My son provides my time-off from all the bureaucracy. I can't stand to see parents whine or swear at their kids in the supermarket. Being so ill has (gets on high horse) really brought home to me the plain fact that raising a child is a privilege, not a burden. It can be hard but I never want him to feel anything but happy and supported.

Monday, 19 May 2008 at 23:31:00 BST  
Blogger Sally said...

saraarts ... good to have your visit, and ditto on the love of fresh uncooked peas. And lilacs.

Thursday, 22 May 2008 at 22:32:00 BST  
Blogger Sally said...

Hi Kay, thanks for your visit and comments. I am spreading my reading of the BADD 08 posts out over the whole year I think !

Thursday, 22 May 2008 at 22:33:00 BST  
Blogger Sally said...

Seahorse, thanks for popping back. Sorry not to be up to date with posting comments, but thinking of you, and others, daily.

Thursday, 22 May 2008 at 22:52:00 BST  

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