Setten Free ?
I have been in some scrapes in my life, but the one over at Geoffrey Chaucer's Blog is the closest yet that I have come to being hauled before my betters and thoroughly chastisened. The life of a volunteer advocate is tricky indeed. King Richard (second of that name) had a go at Chaucer about his means of earning a living (interviewing) and my comment in support of Mr Chaucer led to a warrant being issued for my arrest. Ending my days in The Tower was a distinct possibility. I begged Mr Chaucer to plead for me and His Majesty graciously heard my complaint and took note of the Disability Discrimination Act. See link over to your right.
EDIT - LINK TO MASTER CHAUCER NOW COMPLETED - SEE COMMENTS UP TO 4th July for scary but exciting correspondence with royal personage.
(I know it is polite to add the link in this text so that you can just click and away to the relevant page, but I have lost a whole post while trying to insert and edit. Top-up excuse to the Lupus cogdysfunc is I am currently finding it difficult to concentrate with niggly tooth throbbing which began precisely at 5pm on a Friday when everyone has gone home for their weekend and which little throb has somehow found a direct link to 'up' the pulsing tinnitus in the adjacent ear. Just thought you would like to know.)
How I wish Dorset Social Care & Health were as quick as His Magnificence King Richard, to grant me FREEDOM to use my wheelchair, in my own home. Its not a Listed Ancient Monument like The Tower, for gods' sake.
There have been times during my three year battle with Social Care & Health that I have felt mildly threatened with consequences for daring to tell the Managers at County Hall they are not complying with Fair Access to Care criteria, nor following government guidelines in implementing Housing Adaptations for Disabled People. I have felt vulnerable, afraid, angry and isolated.
So what, I have been in that position before. The adrenalin of a just campaign has kept me going. I thoroughly trounced my employers in the Southampton Employment Tribunal and sacked my incompetent legal representative half way through, then found myself (scarrily) putting my own case to the Tribunal until I could find a legal representative to successfully finish it for me. Two years ago I stood up (sat down and wrote letters) to the Management of a Community Action charity and told them they had a duty to take action on the situation of a predator among my fellow disabled volunteers, and then I had to persist with the local bobbies to ensure they dealt with the predator appropriately.
My campaign for wheelchair access and adaptations to my home, has reached an interesting stage. I think there has been a total climb-down by the County Council SC&H Major Adaptations Panel (who decide the top-up loan to the Disabled Facilities Grant from the District Council) but the Panel Chair's last two letters, in response to my strong well argued points, have been so filled with the dross of his protestations that he was acting in my best interests, that it has been difficult to see just what he is retracting and promising. The meeting where my OT and her Boss will explain all, scheduled for two days ago, will now happen next week, so all will become clearer then, I hope.
Setten free ? Not just yet.
After three years of asking, until the specifications and plans are finalised, project managers appointed, level of grants and funding agreed and commited, and everything signed, sealed and delivered to my desk, I cannot believe it will happen.
But also, the SC&H front-line staff that will be responsible for getting things moving, helpful and professional though they are, are so over-worked with impossible case loads that I sometimes feel it is only humane to cut them some slack. Then I remind myself that during the three years I have been fighting for wheelchair access and associated adaptations in my home, they have been collecting quite significant salaries, having paid holidays, been supported by their line managers, gone home to (presumably) supportive partners/spouses, and used the office stationery and franking machines for postage. I have accumulated nine files of research, plans, meeting notes, lists, and letters sent, copied, and received, all paid for and posted from my disability benefits.
Enough whinging. I am thankful that I have had the energy, brain power and facilities to research and present my case. Many disabled people cannot do this. Many disabled people cannot access necessary support to fight for their rights, for their eligible disability needs to be met. There are few sources of support or advocacy. A formal complaints procedure is scary and not accessible to unsupported disabled people who have no energy left for a fight against professionals.
Timely, through the letterbox this morning, the newsletter Independently from the NCIL (National Council for Independent Living) www.ncil.org.uk. Many of the problems I have encountered in my eight year stint as a disabled person, are highlighted and discussed in the newsletters.
In the June 06 issue, under the heading Advice Desert is the quote: "It is not surprising that millions of disabled people, older people and carers do not know that they have rights when trying to get their social and health care needs met by social services and health services"
Enclosed with the newsletter is a questionnaire which asks for personal experiences to inform the Disability Rights Commission's support of the Independent Living Bill being introduced by Lord Ashley. The Q can be downloaded from the website. Please read it and reply if appropriate to your experience; either as a service user (existing or potential), volunteer advocate, or campaigner.
If the Bill succeeds and becomes law, and resulting legislation is properly and adequately funded, and the resulting changes are led by organisations of disabled people, (rather than by the grey haired, grey suited men and women at County Halls) then disabled people may BEGIN to be SET FREE !