My arch-nemesis is the common cold. My other disabilities are something I'm used to, and, frustrating as they may be sometimes, they are a part of me. But colds get me down. That said, my discussion of my virus-riddled body isn't (just) a symptom of abject self-pity.
There is a lot going on behind the scenes at The Broken of Britain this week. Left Out In The Cold has generated a lot of attention for the campaign against the Welfare Reform Bill, and most of the work has involved dealing with this.
The most interesting payoffs have come from consistently lobbying MPs of all political persuasions.The problem with this is that, sooner or later, successful lobbying will mean that you get invited to meeting under the Chatham House Rule, meaning that we could tell you what was said, but not who said it.
Accepting such an invitation would reduce us to the same standards as the big charities before the Welfare Reform Act 2007. When The Broken of Britain was set up, we decided to be a voice for disabled people but not an unelected spokesperson, like the big charities, making decisions for all disabled people.
On the other hand, going to the meeting is recognition of our very real concerns about the Welfare Reform Bill. There is a slim opportunity that we may be able to push forward our suggested amendments to the Welfare Reform Bill, and we can definitely discuss the "anti-disability" provisions and the failure of DLA.
So we have to ask the people who matter: do you want The Broken of Britain to go to the meeting? If so, what do you want us to say? This is for you to decide.
This is where the cold enters the picture. The decision is yours on principle. But I also have a cold and my head is fuzzy, so I'm delegating. I'm off to bed...
I reckon, go for it. That you recognise you do not speak or make decisions on behalf of all disabled people is very laudable; however there's no point being a voice for disabled people if you don't speak when the Powers That Be are listening.
ReplyDeleteI hope your cold eases off soon.
YES!
ReplyDeleteGo to this meeting and somehow tell them that they are eejits (in the nicest way)
They are using disabled people to number crunch and supposedly reduce pauyments when putting people on JSA or ESA does not do this.. All it does it move already sick people into a place that will make them more sick - and the ESA medical is a farce..
As for DLA - There is no problem with this benefit it is NOT easy to get! Not by any means - If they want to check people who get it - thats ok - But to totally bin it and spend millions making up a whole new benefit is ridiculous in the extreme and it wastes money!
To save money they need to UNDERSTAND that DLA helps alot of people to work - They need to understand that DLA allows so many people to LIVE with their conditions and no ATOS medical is going to suddenly cure peopel whose specialists are unable to cure them - They need to ADMIT the fraud rate is only 0.5% and stick to that and stop lyign through the press about us!
A society will be judged on the basis of how it treats its weakest people''
And if they want a 'big society' then they want to STOP trying to turn everyone against the weakest members and instead they want to embrace the fact that many people were either born or accidentally became or just got an illness and didnt get here by choice
They need to know this and - I am sorry but if you can be the words and the mouth that alot of us are not able to have - then you could be the saviour of us and you just have to try!
Please try!
Somehow somebody has to fight for us - somebody has to show them we are not scum and we ARE worth it - They are acting like we are nothings and it makes me feel like Cameron is the next Hitler and will soon eradicate all the disabled because to him we are dirt - worse than dirt!
Please - Go - Please talk to them and tell them that they are throwing money away - we are not the scum they say we are! We have no voices they cannot hear us so somebody has to shout for us! - Please - let that be you!
I would ask that you take Kaliya as her words are fantastic to me...
“It’s vital we all remember we are just an accident or illness away from becoming disabled.'' Kaliya Franklin
You must go.
ReplyDeleteOnly politicians get to decide in Parliament.
If theres a chance to make them listen you should take it.
ReplyDeleteAlongside the huge effort you've all put in behind the scenes probably at the expense of your own health and sanity at times your success to date stems from reaching out and campaigning in a very different way from the big charities whose funding and other corporate needs basically lock them into defending the status quo. Those now household name charities didn't set out to become part of the problem they were very subtly corrupted along the way by the prospect of gaining closer proximity to power . Say thanks but no thanks and return the invite .
ReplyDeleteYes, go and best of luck
ReplyDeleteHonestly I say go for it; I know there are those (anonymous/clive, I presume?) who have some anti-charity agendas on the cards and I get that some have sold out, but the point is you have to get the Powers That Be to actually LISTEN. If TBoB was actually getting charity donations and had charity status I might be more concerned. However, since TBoB is still very much independent as a lobbying-group I don't see the issue.
ReplyDeleteYou're getting heard now and you'll have to use it. While you cannot speak for all disabled people, it shouldn't discourage you from speaking at all. I know people tend to get so hung up on semantics, language, and Politically-correctness that they don't actually end up doing anything at all whatsoever. We cannot afford to stymie ourselves into inaction because we can't all 100% agree on whether "disabled" or not is a Nice Word.
You've done all the hard work and managed to get this far through that hard work. Do not be put off from pushing for it because there may be one or two voices who haven't been supportive who might possibly object.
Carry on!
In fairness it wasn't Clive it was me posting as anon above but rather than personalise lets cut to the chase, the Broken of Britain has made a real difference precisely because it has operated as an open , flexible and inclusive network not as a static , rigid and remote top down secretive organization distracted from its stated aims and objectives and user base by funding and other conflicting corporate needs and self-imposed institutional restraints.
ReplyDeleteIt's also not a matter of one or two dissenting voices as the Broken of Britain network's very existence was brought about as much by the disability charity sector's inability and/or unwillingness to effectively platform the authentic voices of disabled people as it was by the selfish coordinated betrayal of the Broken of Britain by the UK's main political parties - ergo this openly questioning and self-searching blog post so many people have taken the time to respnd to.
How does a successful campaigning network continue to effectively challenge , oppose and bring genuine grassroots pressure to bear when its being sucked into organizationally reconstituting and censoring itself in ways that objectively help maintain the status quo?
Please go to the meeting. And hope you get well soon.
ReplyDeleteI think you're all making good points here. If we want to be a voice for disabled, we need to present our views to people who can make a difference. That said, Dave Neenhan summarizes my own fears about this.
ReplyDeleteAt the moment my head is still fuzzy with cold so I'll think about this whn I'm more lucid. All I can say right now is that, if we do go, we will not negotiate - we go make our point, and get out. But would we then be sellling our soul as a grassroots organisation?
If Broken of Britain have been given an opportunity to be heard then I say go shout from the rooftops.
ReplyDeleteWould you then be selling your soul as a grassroots organisation? I say you won't because the one thing that BofB has, is integrity and its this that will keep the soul intact
I would go along, at least you may get a chance to present our fears and concerns.
ReplyDeleteIf I follow you correctly you can let us know what was said, but not who said it! At least we'll know what thay're saying rather than being totally in the dark.
The politicians are the people who have the power to affect a change in policy and ammend it. If you don't speak at this meeting then you'll miss out on a chance to really make your point. In my experience face to face can really make a difference!
I understand your concerns, but we are not going to be kept entirely out of the loop!
I say go. This is a chance to really make ourselves heard and it would be a shame to waste it.
ReplyDeleteI don't believe that going would be tantamount to selling BoB's soul. Even if you can't say who said what, you can still say what was said. And we can give input into what we want you to raise
"we go make our point, and get out"
ReplyDeletea good plan
Please go. I thought that the whole point of The Broken of Britain was to campaign against aspects of ConDem policy which hurt disabled people. They might just be paying you lip service but you've been invited to say your piece to people who are able to make a difference to these welfare policies. Like I said, they might not listen and take what you say on board but if you don't go then you're shooting yourselves, and the rest of sick & disabled people in the UK, in the foot.
ReplyDeleteA practical point - if you go presumably you can't record it. However, are you allowed to take notes/minutes of the meeting? If o, someone should be there who can do that - or at the very least, make notes immediately afterwards. It will be hard to remember clearly otherwise.
ReplyDelete2 questions -
ReplyDelete1. Who will be at the meeting? MP's from all parties?
2. Does this mean that whatever is discussed cannot be used in any form of argument afterwards - eg. as a document headed "Without Prejudice" cannot be used as evidence in a court case? If so, will we be left in a position of knowing things but not being able to act on them, quote them, contest them?
"When a meeting, or part thereof, is held under the Chatham House Rule, participants are free to use the information received, but neither the identity nor the affiliation of the speaker(s), nor that of any other participant, may be revealed."
ReplyDeleteSo go and speak on our behalf and listen to what the other participants have to say. Then report back to us. That is, if you can bear the excitement and strain of knowing who said something but never, ever being allowed (morally) to tell anyone who it was! Or even who was there...
http://www.chathamhouse.org.uk/about/chathamhouserule/
For my part, please touch on these points:
Many people with chronic, long-term musculo-skeletal plus neurological problems do not 'bother' their GPs with sprains, strains or many other of those little extras to which we're prone. We've already learnt the 'proper' way to manage them and can reduce many dislocations/subluxations ourselves. By the same token, we rarely see rheumies, pain-gods, physios etc., as they can't often do more for us than they taught us to do in the first place, and that we can usually manage ourselves or with the aid of our helpers/aides/carers etc.,
This doesn't mean that we're absolutely fine and dandy. Just that we're often only on the GP's radar for repeat-prescription overviews and the same annual or three-yearly checks everyone else has.
When we DO ask the GP for a referral back to a specialist, they're often reluctant as they don't think that much good will come of it. And we'll wait months for the specialist appt. anyway unless something's hanging off ;-)
When we need help with filling forms for changes to our physical circumstances it's increasingly difficult to get appointments with the CAB - and we're not exactly trusting of the government's own phone-line service. We want the independent advice because we need to make sure we get it right and don't mess things up by leaving out an entire section because nothing's changed there...
We might moan about the form and it might take us weeks to fill in and we might then take weeks to recover from that and live on tenterhooks until we are reprieved from fear by a positive decision. But we do understand why we need to share intimate details and give full, honest and in-depth answers - it's because the effects of a condition or disease is different in every individual and the decision maker needs all the evidence to make the correct decision on award and level. DLA IS fit for purpose.
That's a couple or three suggestions to be going on with...
xJ
Personally, I think TBOB should attend this meeting. You have been given this opportunity to voice the concerns of us all and I for one trust you on this one to handle it the right way. You have acted with tremendous dignity and respect and been our voice and I thank you for that.
ReplyDeleteWe're all terrified, you've been given this opportunity, please don't pass it over.
Definitely go. I don't care who you speak to or what they say, what I need is them to change what they DO.
ReplyDeleteAll I'd ask is not to let them get away with slick political-speak and policy regurgitation in lieu of answers. This may be a career opportunity for them but it's life and death to those of us effected by welfare changes who genuinely lack other options (we can't just 'get a job' for example).
The fact that you didn't allow my reply shows you have zero chance of changing things. You appear comfortable in your association with cyber stalkers and forgers. Your loss, that will be shown to organisations by others as well as myself.
ReplyDeleteFTR, I only post under my own name or clivegsd, while some of the people you work with have members that attempt to make out they are me to cause trouble (carerwatch and carers poverty alliance members) merely demonstrates that the people you work with have destroye
Clive, the reason that your reply was deleted was that you made some quite serious allegations without proof. Hypothetically speaking, The Broken of Britain would then be open to legal action.
ReplyDeleteI don't think that I have ever heard of Carers Poverty Alliance. As for CarerWatch, I had never heard of the associations you make prior to your comment the other day. You are very welcome to e-mail the details and proof.
The Broken of Britian has been a beacon of light and a voice to many this past year.
ReplyDeleteWhat ever your disitions may be it will be well repected and have an ongoing appriacation from all.
Look after yourself first then go with your own gut reaction.
Those assessments devalue that many organisations they need to be stopped.
Please go to the meeting. TBoB have said a lot of things that I couldn't put any better.
ReplyDelete