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.