Mar 282011
 

ULOs or Charities – who’s running “The Hardest Hit”?

There’s something very odd going on.


The UK Disabled People’s Council has joined a coalition of predominantly User Led Orgnisations (with some small or larger charities) to organise a big march, rally and lobby on Wednesday, May 11th over the issue of the ConDem cuts and their impact on disabled people. It’s called “The Hardest Hit. They provide practical information here. Examples in their list of organisations include the Alliance for Inclusive Education, the Council of Disabled People Warwickshire and Coventry, Disabled People Against Cuts and Inclusion Scotland.

Strangely though, a separate coalition is also organising a campaign on Wednesday, May 11th also called “The Hardest Hit“. There are some striking similarities; this is another march, rally and lobby to campaign about the cuts that will affect disabled people. But it can’t be the same event, because – look! – the organisations involved are completely different! There are no User Led Organisations; the organisers listed are almost exclusively large charities FOR disabled people, for example Age UK, the Disability Alliance, the Muscular Dystrophy Campaign and Leonard Cheshire Disability.

There’s not a User Led Organisation in sight in the “Hardest Hit” website’s list. This event will apparently be run by organisations FOR disabled people, rather than user-led organisations OF disabled people. Also it’s very apparent that Leonard Cheshire ISN’T listed as taking part in the UKDPC post; but IS listed on the charity consortium’s website.

Two events?

I am, of course, being facetious. There will be one event of some description. But there’s some skulduggery going on here.

We all know that the Disabled People’s Movement have had issues over the years with un-democratic disability charities taking resources and language from ULOs; disempowering them in the process. Whenever big charities pretend to be the “voice of disabled people“, they don’t have legitimacy or the mandate to do so and they take the voice from organisations that do have that legitimacy.

As a result, the relationship between user led organisations (of which the UKDPC is some form of co-ordinating body) and the big charities has been a little strained over the years. Compromises have had to be made; such as when the UKDPC worked with SCOPE in order (theoretically) to get resources for their ULO members. An uneasy relationship of convenience or necessity has sometimes occurred.

Where this happens, there is inevitably a conflict between conscience and necessity; between a degree of sacrifice of ideals and principles balanced against the requirement to grasp the crumbs from the tables of the rich charities.

Where this has to happen, though, I think organisations should at least be up front about it. That’s my concern here. For example, there’s an apparent careful omission of that most dreaded of organisations Leonard Cheshire Disability from the UKDPC’s list. LCDis  prominent in the charity coalition website as one of the organisers, with its Pink Square logo on the front page.

Leonard Cheshire Disability: abuse

As many (most? all?) readers will know, LCD have been despised in the disabled people’s movement for decades. LCD will claim that they have been misrepresented historically and that they have changed now; but the reality through many disabled people’s experiences is to the contrary.

I should immediately declare my potential bias in this situation. I have lived in a residential care home run by Leonard Cheshire Disability since 2001. Despite being paid well over £1,000 per week for my care and accommodation, they have been exposed as having mistreated me multiple times. Most disturbingly, in January 2010 they attempted to evict me for being too “troublesome”, raising too many issues relating to my and other residents’ rights.

In April 2010 there was a multi-agency safeguarding investigation and case conference which universally concluded I had been subjected to long-standing institutional abuse by Leonard Cheshire. They didn’t like this so they threatened it with judicial review, forcing a repeat of the whole investigation; as a result the multi-agency process concluded I had been subjected to institutional abuse, specifically psychological abuse, in December 2010. To quote an aspect of the report:

“The evidence gathered as part of this organisation has highlighted practices and attitudes, over a period of 2 years, from a range of senior management, towards Mr Paulley, which points to institutional abuse. The cultural and attitudinal behaviours towards Mr Paulley have caused him emotional and psychological harm.”

And from the case conference conclusion:

“It was agreed by all present that institutional abuse had occurred, and that in particular, this had included psychological abuse.”

Leonard Cheshire didn’t challenge that one.

There is an ongoing investigation into additional safeguarding concerns in relation to other residents. In the meantime, LCD have admitted their “errors” and apologised to me. They have lifted the eviction threat, and we have started the long and difficult process of patching up relationships. Also, following a botched restructuring process, many of the responsible senior management have left.

So I obviously have a long-standing gripe with LCD, which would colour my perceptions of them. It has to be said though, that people’s expressed experiences of LCD over the years confirm my experiences – including an utterly damning report (.doc, 400Kb) by Northumbria University into LCD’s supposed user empowerment processes. The report was sat upon; LCD refused permission to release it and apparently didn’t even show it to their own trustees.

Leonard Cheshire: exceptional or an example of all that is wrong with charities?

As I alude to above, there is a long-standing antipathy between Social Model based disabled people’s organisations and Leonard Cheshire; perhaps best exemplified by this report by Dr Laurence Clarke. (PDF). This has resulted in a number of innovative protests and direct actions by disabled activists.

But that all looks very historical. Is it still relevant? Should ULOs / DPOs down swords and form alliances with LCD now that things have ostensibly changed? Are they that much different to, say, SCOPE or MENCAP?

I don’t know. But here are some of the criticisms levelled against charities, and LCD in particular.

  • They take resources from DPOs. I’d like to compare the cost of the Leonard Cheshire’s Policy and Campaigns Team with its many paid staff, and that of a typical ULO, for example the excellent Being the Boss. Despite having turnovers of hundreds of thousands and charging all residents a “profit”, they still compete with small ULOs for grants.
  • They have double standards,  preaching one thing whilst practising another. I leave my experiences in evidence in this regard; they claim full adherence to human rights and to campaign for similar elsewhere, whilst treating me with contempt.
  • They don’t have a mandate to speak on behalf of disabled people. The people with “influence” in the charities, e.g. in the Policy and Campaigns Team, are predominantly non-disabled. There is no realistic, functional, democratic mechanism for them to receive instruction or experiences from service users in their own organisation, never mind elsewhere, before they use their influence. So they don’t effectively represent anybody.
  • They take away ULO voices by being the “acceptable face” of disability, non-radical, the “old boys network”, posh suits and so on. Politicians would rather speak with them than ULOs. LCD claim they want to be “the Google of Disability” – where does that leave ULOs? I think it’s most interesting that the ULOs aren’t even mentioned in the “Hardest Hit” website.LCD have offices in the exclusive South Lambeth area of London (they grew too big for Millbank) on the pretence that this expensive location is required to enable them to lobby Parliament; in reality, the majority of the staff in the office aren’t involved in such activity and those that do lobby don’t go to Parliament often enough for this to be a legitimate excuse. “These charities are not run by us and not controlled by us yet they claim to speak for us”
  • They appropriate and corrupt Disabled People’s language and political concepts. The powerful concepts in the Social Model and in the independent living concept are corrupted by Leonard Cheshire; whilst talking the talk, they don’t always walk the walk (as shown by their victimisation of me for demanding my rights.)
  • Their user involvement and representation policies are non-functional. The decimated Service User Support Team (inaccessible PDF, large file!)  illustrates this. They don’t recognise disabled people’s experience and expertise by paying them (service users being the only people at meetings not being paid), nor do they have a robust commitment or practice to anticipating and meeting access needs.

I could go on.

Now I don’t know if this is a particularly bad example of the Disabled Peoples’ Charity Sector or not. But I think there are some serious questions.

UKDPC and LCD on May 11th – a secret and unholy alliance?

It’s perhaps a storm in a teacup: the rally on May 11th was a bad idea anyway as many disabled people spent their money and effort supporting the wider “March for the Alternative” last Saturday (March 26th 2011). The reality is probably that May 11th will be an ill-attended, “acceptable,” non-confrontational flop. I expect the event will regretfully have very limited influence in the scheme of things. I frankly think it’s bizarre and a big mistake that the UKDPC didn’t have any significant input into the big March instead.

But still, there’s an interesting dichotomy Given all the above concerns about LCD, I can see why the UK Disabled Peoples Council are nervous about being seen to act in concert with Leonard Cheshire, that they would want to distance themselves from LCD’s practices. It’s interesting that on the UKDPC website and in their press releases, they mention all sorts of other organisations but don’t mention Leonard Cheshire, who apparently have a key role in organising the protest on May 11th.

But I would ask: if they are so (rightly) concerned and ashamed to be seen to be working with LCD, why are they doing so?

Should the UKDPC have a policy of ¡No pasarán! towards Leonard Cheshire?

And:

If the UKDPC are prepared to work with Leonard Cheshire, should they not at least be open about it?

Otherwise, how will we know if we can trust the UKDPC? They are in great danger of losing credibility over this matter: only a frank admission and swift and decisive action ahead of May 11th can divert this train crash.

Please, UKDPC, tell us what’s going on

I hope you prove me wrong, because from outside it doesn’t look pretty.

 

With thanks to Crippen / Dave Lupton Cartoons: www crippencartoons.co.uk for his most excellent cartoon. Do view his entirely more incisive article on the same subject.

  18 Responses to “The Hardest Hit: two separate events?”

  1. Im not climbing into bed with the enemy, but i see this as a chance to get to see my mp in person at the commons through the rally, so i can hammer home the point to her about the need to oppose benefit changes that leave disabled people homeless and with out dignity. therefore i am attending due to this, as i cannot get to her local surgeries as there is not bus to them at weekends!, also, i never know who else i may bump into as i know many mps and members of the lords from my old labour days – these days i grasp every opportunity to get my voice across..even by sailing on the back of the enemy to get there!, but never in the same bed

  2. Getting into bed with the enemy usually means you will get shafted by the enemy!

  3. I contacted UKDPC about this and their response is

    It is planned that the front of the march will have the ‘Hardest Hit’ banner which will not be endorsed by the ‘for’ organisations. I think it is very important the DPOs carry their own slogans, banners etc to bring the march to life and show our anger towards government policy reform.

    rich

  4. I will be marching. Hope to see you there.

    I broadly agree with no deals with charities for disabled people. It is an aim i support and have been seen to support. The organisation i work for will not deal with the same. So why am i marching?

    Someone much wiser than myself said that this is the first opportunity in more than a decade for disabled people to meet together, to sing from a common song sheet and to take pride in the idea of a fragmented movement finally getting their act together and doing something together in solidarity. It is an opportunity to meet other disabled people and to re-engage with old friends.

    But more than this isn’t it an opportunity for us to re-engage withour own aims and ideals. Isn’t it time to say that we are against poverty, against discrimination, against the abuse of consecutive governments in labelling us the workshy, the scroungers, and time to say that we are for independence, inclusion, and other rights.

    Maybe what we should be doing is asking UKDPC to ask the hardest hit groups to put down their own banners, their own promotions, in the name of working with disabled people and disabled people’s organisations who do not recognise their position of charities in speaking for us. Alternatively we can ask for disabled people and our organisations to head the march with the hardest hit behind as non allies who share a common interest. And if they don’t maybe we could insist on taking our place at the front, and actively remove banners and promotions that we do not agree with.

    Either way, i’m going to be there.

  5. I am writing this in my personal capacity and this is purely my own opinion.

    I am writing in sadness because through disability history in this country, disabled people have fought for self determination to get their voices heard and their life chances recognised. I want to say I am proud and disabled. But I don t understand why some of the disabled leaders have opted for what seems to me like resource expediency and agreed to fight under the charities’ banner especially the LCD banner. DPOs are going under and charities are picking the pieces up – they’ve hijacked the language of disabled people but for them we are their cash cows and they get the fame and the glory – doing good for the deserving poor crips. Since when have they been interested in our rights? And in the mean time, the government is making it easier for corporations to make philanthropic donations which will potentially increase the power of charities in relation to DPOs. See Crippen’s cartoon (http://www.dpac.uk.net/2011/03/crippens-cartoon-big-society-beg-society/)

    My mate in Malaysia, Peter, writes to me about how disabled people there fights about some concessions instead of for fighting for the rights which should give us dignity to live the same as non disabled people. Here they want us to scrabble for concessions – and we might even stave them off for a while but what stranglehold will they have in the future? that we needed the charities to rescue us – we really couldn t do it ourselves. Poor crips.

  6. I don’t care who is organising it – I just want my voice heard and will be going as a member of a USER LED organisation. 😀

  7. Great blog Doug and big thank you for supporting Being the Boss. I was extremely disappointed when I read that UKDPC was holding a separate rally as myself and my two friends were there last week and cannot afford to go again – however – perhaps it was meant to be because I cannot see how it is possible to have confidence in s ULO who sides with the enemy.
    Being the boss has been in operation almost two years in this time we became a company and got charity status. We have 70 paid. Up members of the association of disabled employers, have produced an employers handbook in standard print and also in easy read. We produce a newsletter once a quarter to our members – not bad consider there are four of us all doing it for nothing. Not that we haven’t tried to get funding we have but one thing I can say is we do it because we believe in supporting disabled people not for the dosh.
    The rally last week was great and though it was both tiring and expensive in travel costs I can honestly say I FELT PROUD to be part of it.
    It was great to meet up with old friends “you know who you are”.

    Here’s to more actions and a fairer society.

    Thanks Doug for getting this blog up!

  8. I think we need to say that there are some good DPOs involved in this too, but not one of them are included in the glossy web page set up by the charities for their version of the Hardest hit campaign-just as LCD are not included in UKDPCs.

    http://thehardesthit.wordpress.com/

    The charities (also known en mass as the Disability Benefits Consortium) must have been simultaneously rubbing their hands together in joy while setting up their expensive looking web site depicting disabled people as weak pathetic and vulnerable victims. The loss of benefits and the attacks on independent living by this government must be all they could ever have hoped for, add to that the loss of funding to many DPOs,opportunities to grab contracts ( as Julia’s post proves) and they have a recipe for even greater profits on the backs of disabled people. They may be marching in triumph to parliament – they finally won everything they wanted,again at the cost of undermining those organisations run and controlled by disabled people and disabled people themselves.. under the old guise of supporting them.

    Was going to add comments made in a personal capacity and not connected with anything else I’m involved in, but everything I’ve ever been involved in is social model and will never be charitable model.

  9. Great blog Doug!

    Wonder why we’ve heard nothing from UKDPC on either of our blogs?!

    😉

    • Can you tell me whether UKDPC have responded and if so where I can find it. I find it concerning that I have been reading lots about LC as part of my phd but this is the first Ive heard of this and came accross it by accident! If this has not been responded to and resolved then it needs to be widley disseminated so we can make informed decisions about whether we want to be a member.

      I found great irony in Larence Clark’s article mentioned earlier “…the formation of our disabled people’s movement was a direct response to the oppression experienced by disabled people in Cheshire Homes” .

      Couple this with Paul Darke’s (2001) warning that “[the] bleakest future for disabled people has to be one where Leonard Cheshire becomes ‘the [disabled people’s] movement’ so that instead of being an oppressive catalyst for change 40 years ago, it becomes an oppressive catalyst for our destruction in the next 40.”

      All the best,

      Harvey

      • Hi Harvey, thanks for your comment, apologies for not getting back sooner.

        I am intrigued by your research etc. Could you tell me some more or point to where I can find out about it?

        UKDPC issued a statement which I suspect was in response to my blog / Crippen’s blog / other people’s representations. But I can’t remember it enough to summarise its content here and I can’t find it on their website. They are going ahead with further “Hardest Hit” events this autumn.

        Disability Now reported that the UKDPC had issues with the Low review into mobility allowance in residential care, as the review is run by LCD and has no involvement of DPOs. Then the UKDPC wrote a letter about it, from which I will leave you to reach your interpretations:

        Over the last few years, we have in common with other DPOs and the larger charities attempted to find a common ground of agreement from which to move alongside each as we work to influence and create an inclusive society. The Hardest Hit Rally was a tremendous achievement. That came about through a recognition and respect of each of the organisers experiences and skills, without any evangelical posturing about moral superiority. We achieved a way to work towards a common goal through discussion and negotiation, carefully listening, and agreeing an acceptable middle path at times.

        Our work as part of Disability Lib Project was creative and progressive and demonstrated the positive power of influence and change that could be brought to bear through working closely alongside our partner organisations. We are proud to have been part of this innovative project and to have actively supported over 200 disabled peoples organisations in this climate of cutback and closure. As you will be aware, one of the partners was Scope, and we continue to consider ways in which to further the results of this project. Again this was achieved through recognition and respect of the fundamental differences between each of the partners groups and finding the points of agreement.

        All the best to you

  10. I have fought for equality most of my adult life and will remain loyal to the Disability movement. This is not about equality, it is about PR and nothing more!!!

  11. As a former Chairperson of the British Council of Disabled People and a co-founder of DPAC, I’ve always felt unease in working with traditional disability charities, but nevertheless understand that at times it might be necessary to form ‘broad alliances’. When part of Rights Now I witnessed the Big Six employ double standards and finally stab DPOs in the back by doing deals with the Blair regime.

    A great deal of water has passed under the bridge since then, and I was prepared to sit round a table with the majority of the charities and discuss common goals and objectives, but my willingness did not extend to organisations known to openly abuse disabled people’s human rights and that includes LCD.

    The past few weeks have, unfortunately, confirmed my worse fears. The most common features which unite all the named “wings” of The Hardest Hit Campaign are arrogance and contempt. Once it was simply the professionals who acted as if “they knew best for disabled people”; today, in my opinion, some DPOs behave in an identical manner and I would include UKDPC within this characterisation. I am an individual and do not respresent others; I know it will be said that I too have an axe to grind. My position in 2011 is as it was in 1999, I will not stand by an allow undemocratic groups be they run by disabled people or not, sell the community of disabled people short by putting their own interests FIRST.

  12. I would just second the point about LCD taking work from user-led disability organisations. They have just come into my borough and taken a quite large contract off my local DPO. We are all furious about this. No doubt they were able to undercut us on costs, or perhaps we didn’t look as ‘professional’ as they were able to. But it’s another example of local disabled people losing control.

    I was so cross I had a little look at some of their trustees and found that one of their Vice Presidents, Sir John Blelloch, is an ex-MI5 man who negotiated with the IRA hunger strikers on behalf of the British govt in the 80s. You might find the following quote from him interesting: ”Our objective…was to try and move the protesting population from a condition of protest to one of conformity by very easy steps’ (www.bobbysandstrust.org). Perhaps little has changed.

    • I am so sorry to hear about LCD nicking work from your local ULO. Please dust yourself down and get back to the fight, you’re needed here. Our knowledge and dignity can win the day, anyone “into disability” for the long haul will see us as better partners.

  13. As a member of the Disabled Peoples Movement since 1987, I have to say that I find this all very disturbing.

    I can understand the difficulty that UKDPC finds itself in regarding funding. I can even understand the pressure to work openly with Charities like Scope. But what I don’t understand is a covert relationship between UKDPC and Leonard Cheshire Disability.

    If UKDPC is, as alledged, working with LCD then it really should be open about it so DPO’s and individual disabled people can take an informed decision about whether or not to attend this event. Duplicity is really not acceptable.

    My personal feeling is that LCD is just another poverty pimp, making huge amounts of money out of disabled people, whilst using the language of the social model to oppress us. Citizenship Academies and job placement schemes are simply mechanisms for generating profits and treating us like any other commodity.

    Note to UKDPC – we have been here before and it ended in disaster. Does ‘Rights Now’ ring any bells?

  14. as one of the co-founders of DPAC and a trustee of Warwickshire and Coventry CDP I would just like to say that both of these DPOs have withdrawn from this due to Leonard Cheshire’s involvement.

    We were also interested to see that while UKDPC are supposedly ‘leading; this event their logo wasn’t included in the advert for it. Can’t imagine why??? could it be that the charities don’t think they need to bother with allowing disabled people to campaign for themselves?

    The charities involved in this Consortium are also most of those also bidding for £628 million from the Disability Works scheme where they will make money from forcing disabled people into low paid jobs, rather a conflict of interests I feel.
    (comments made in a personal capacity)

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