Here's Our Forum

[Nancy]

Welcome, I've started this forum to enable us to discuss without pesky character limit how to move forward with our campaign.

Please share this site with anyone else you feel may be interested in our campaign to lobby against welfare reform, in relation to how it is going to affect (and is already affecting) disabled people, particularly those with mental illness who seem to be an under represented group at the moment. See my top blog post at:

www.nancythroughthelookingglass.blogspot.co.uk/

For info about what we have discussed so far, and feel free to start new topics about your own research and suggestions for how we should move on. We need more members too so please share the forum with anyone you think might be interested in the issues we're discussing.


This board also allows us to have avatars and signatures so take advantage of that by updating your profile when you've got a minute. If you link your social networking accounts like twitter and facebook you can share the threads you or anyone else start by clicking the share symbol at the top of the thread.


Post away.

[edwinmandella]

My main thought at the moment is who is speaking for us? Stephen Fry's intransigence at the plight of the disabled got me to thinking, does anyone really care? My experience with Charities is with Headway where I worked as a volunteer for over a year following leaving my job as a CFO. The view of Headway and its Regional Chairman Dr Trevor Powell seemed to me to be you're too sick to work. Come and help other Head Injured people with tea/ coffee and sing some songs!
I have since found a job with an AIM company in the Care Industry as a FC and am worried that even people that support us are writing us off. I believe we deserve better. Do you agree? How can we get better? Ideas please people!

[edwinmandella]

Do we need new charities? Are Charities meeting our needs and ambitions? Do the Charities really speak and represent us or are they in it for themselves? What would you do differently? Are some Charities willing to engage and listen to us?

edwinmandella.blogspot.co.uk

[kyr]

I agree that we need to fight welfare reform and that we cannot rely on the charities. I am putting a lot of my hope into Pat's Petition which is asking the government to "Stop and review the cuts to benefits and services which are falling disproportionately on disabled people, their carers and families". The link is here
epetitions.direct.gov.uk/petitions/20968

The petition is a grass roots petition which has come from a group of ordinary volunteers, who are carers and / or disabled who are alarmed by the number of changes taking place and their effect on society's most vulnerable.

The petition has nearly 35,000 signatures but needs 100, 000 in order to generate debate in parliament. It will only do this if people pass the link to all their contacts and encourage people to vote and share. So please promote to all your contacts and ask them to share too.

[Nancy]

I'll start a new discussion for pats petition, and am working on developing the board now, keep starting new discussions and making suggestions.

[edwinmandella]

I highlighted Charities but that may be a "Red Herring".
How do you think we should represent ourselves to the country?
We might choose to develop a lasting national presence and voice of which we are proud and which we know represents us?
We might choose to work with the Charities to educate them! We might choose to go back to bed!
What do you choose?

[Nancy]

I've started a couple of different topics for suggestions about these things, we need to think of a name for our campaign and design a logo for starters.
I'm also concerned about the fact these charities are increasingly taking over mental health care services as the NHS is cut, and already seem to be doing quite a bad job. I want to gather some information about this and make it a point in our campaign as well as the welfare reforms impact on us.

[frances]

I'm really excited about this new group. Something like this has been needed for so long. Mental Health disability fits in to all disability campaignign but it really needs its own campaign. It is completely neglected.
I have enormous issues with the charities which I will post about on the charities thread. But they don't represent us and we need to represent ourselves.
When I say us - I am actually a carer - my son has schizophrenia. I will at all times defer to people who are service users themselves and experience the problems first hand. Ideally no carers would need to be involved. But sadly my son and his friends don't feel able to take part in campaigning because it involves fighting and they don't feel able to do this. Many service users do fight like MadPride who are wonderful but sadly for many they find it difficult to speak up. But I quite understand if you want to keep this forum for people who have mental health conditions themselves.

[Nancy]

I agree Frances, there are several other groups fighting against welfare reform for all disabled people who I will create boards about later and who are great.
But Mental health issues require different treatments and our services are usually funded separately on the whole to other disability services, so we do need our own campaign group.
Sadly existing mental health charities don't seem to be doing enough to represent us, they all seem to want to "fight stigma". None of them are addressing the issues we really face currently with benefit changes and trying to find employment if long term unemployed because of mental health conditions though. Plus dealing with the issues with mental health services, both those provided by the government and charities, not truly giving us the help and support we need.
I'm aware also that people with mental health issues find it difficult join campaigns and find a voice at times like this, as it just makes us too ill to cope, we want to give them a voice too. So I don't just want to keep this forum specifically for people with mental health conditions themselves, I also want to keep it open to carers and others who might want to help our campaign. I am even hoping that people who work within the mental health services might join us in our campaign as they must be feeling the pressure of the cuts and seeing the impact of welfare reform on their service users every day.
We also need people who can help us to get legal advice and advise us on what best to do in other areas of the campaign. I'd like to produce some kind of report similar to the Spartacus report that relates specifically to the impact welfare reform and service cuts are having on people with mental health problems.
So please share the forum and post your own experiences, as the more testimonials we have the sooner we can start confronting charities and mental health care providers with our findings and fighting for change.

[edwinmandella]

Hi,

In terms of our mission statement, I believe it would be best to agree a very high level statement and then work down from that.

I am looking to develop a forum or organisation that speaks for disabled people on behalf of disabled people. sadly I don't think our Charity's do that!

You could also interpret that statement as an organisation that acts in the best interests of each individual disabled person and doesn't treat disabled people as a commodity.

[Nancy]

Yes I want to try and offer support to people too not just be a campaign group, that's why I suggested perhaps even starting our own mental health charity further down the line.

I also believe most of the existing ones are failing us in many ways, and the only solution now is start our own group, we clearly rely on the existing ones to actually help us when it counts.

[Cllr Penny Bould]

Please join Disabled People Against the Cuts - DPAC has a Facebook page and own website and support us in the Labour Party fighting cuts. Is anyone from Leamington Spaand Warwick district? You can be a Labour Party Supporter without becoming a full member if you want to. Just email me your contact info and I will put register you. Warwickshire County Council is Tory controlled and increasing community meals by another 25p up to £4.25 after only going up in June 2011 to £4 from £3.50 and we are opposing it

[Nancy]

Hi Jenny, I already support DPAC and will start a thread about them in the other organizations board soon. Most of us met through the spartacus campaign anyway so we will also be mentioning them. We still support these groups and want to be involved with them, we just feel there needs to also be one specifically for MH care service users as well.

[lynn]

Hi everyone
Agree about mh charities... don't like the idea of them as hard to get away from the Victorian premise of 'doing for' people who are viewed as 'other' and so, 'less than'. Piss on pity! Is what I say!
Previously, a group of survivors got together and formed a campaigning group called Outcry in 2002, long story, but we had some demos, direct action and held a conference in London attended by 200+ people.
It all went really well, but, then we got a bit bogged down in the should we be a charity? and what do we really want to do? type debates.
Anyway, it's not necessary to be a charity to start some kind of fund with a building society account, if people wanted to do this, we did, just need a secretary and a treasurer.
I think the key thing for me is, what do people want to do and how are we going to do it?

[Nancy]

I think there is a need for a charity that was actually started by people with mental illness and is run by people with mental illness. As lots of people are clearly losing faith in the existing ones.And what do they really do? Lots of anti stigma campaigns and that's about it as far as I can see. And the things I'm hearing about the other services they offer aren't great either. The salaries their chief executives are getting are scandalous too! If I were the chief exec of a charity I would just take a living wage and expenses for traveling to work related events and that's it.