How very dare you!

Having been away from twitter for a week or so, I thought I’d try and catch up a bit on what’s been happening with some of the people I follow. I’m now thoroughly bemused and depressed by what I’ve read. I’m certain that I haven’t caught up all with the relevant exchanges and blogs, but it seems that a segment on Victoria Derbyshire Live last Monday linked to the 5^th anniversary of the Panorama undercover programme about Winterbourne View has been followed by a lot of debate (some of it quite vituperative), largely directed at @GeorgeJulian (and by extension the #JusticeforLB campaign) on the basis of George asking some questions of the Mencap representative @dan_scorer during the TV segment.

There are a few things about how this debate has played out that confuse me, to say the least, and this blog tries to set out some of the basis for this confusion. Upfront, I do want to say that any charity worthy of the appellation should be welcoming the kind of questions George raised with open arms, rather than seeing them as a threat to their corporate brand. [As an aside, the unpreparedness of Mencap to respond to these questions suggests that questioning and challenge isn’t a part of the internal culture of the organisation either, which doesn’t augur well]. I’m not sure that being late to this debate helps or hinders, to be honest, but here goes.

The first thing that struck me was the sense that asking questions about Mencap was in itself not a legitimate thing to do. It wasn’t that the questions that George asked received adequate answers  (and they are questions that are being asked about a lot of big charities, particularly those who are also big service providers); for some people it seemed to be that questioning Mencap at all was somehow to impugn their virtue or to negate/insult anything positive that they do. Personally, I’m not convinced that charity status should automatically confer a shawl of unquestionable virtue, for a number of reasons.

First, surely the example of Kids Company should be enough to make anyone want to see transparency and accountability in the charity sector, and to worry about any charity that takes on the mantle of virtue to the extent that any challenge to its operations is seen as sour-faced and illegitimate.

Second, there are inevitable (and perhaps sharpening) tensions between any charity that functions as a service as well as a campaigning organisation (and in an English context Mencap is a large provider of a wide range of services for people with learning disabilities). To what extent can any such charity bite (rather than lightly nibble) the hand that feeds it, and how do Mencap’s campaigns negotiate these tensions?

What should be the expectations of a large charity providing services for people with learning disabilities, to justify its charity status (including the ensuing tax breaks)? My personal list would include something like the following (although this list is not exhaustive, and some non-charitable service providers manage at least some of these better than Mencap):

1. A commitment to human rights (with strong, publicly available evidence that their services are showing a commitment to this routinely, day by day).
2.  An open, transparent culture of continuous learning to make their services the absolute best possible – to rigorously evaluate how good their services are, to be honest about where things aren’t going well, and to be curious about how to make them better. A quick look at the CQC website shows that, while most inspected Mencap services are rated as good (87, I think), a substantial number (12) require improvement and 1 service was rated inadequate. No Mencap service was rated outstanding.
3. Evidence that people with learning disabilities and family members are central to deciding how the charity is run (including how the services are run), what the campaign priorities are, and what the goals of these campaigns are.
4.  Public evaluation and reflection on whether the campaigns have met meaningful goals, with ongoing debate about the effectiveness of their campaigning activities and what this means for achieving meaningful change.
5.  Supporting, taking part in and contributing resources to other campaigns and campaigning organisations led by people with learning disabilities and families.
6.  Generally, ‘being the change you want to see’ (not Mahatma Gandhi, apparently) – for example, if you’re going to campaign about the employment of people with learning disabilities you should be an exemplar employer of people with learning disabilities yourself.
7. Supporting people with learning disabilities and families to develop compelling new narratives and policy proposals for a comprehensive, positive alternative agenda for how people want to live their lives and to be supported in doing that.

From an outsider perspective, it is impossible to know how much Mencap are doing any of these things.

The central Mencap communications strategy appears to be really quite corporate and ‘on message’, with very little meaningful engagement with other people outside the Mencap circle. Social media statements are relentlessly cheery, with lots of openings of things, fundraising activities, repeats of Mencap campaign statements, and congratulations to Mencap services getting a ‘Good’ CQC rating. Occasionally there are calls for the government to do something (although, beyond actions that result in increased funding for the type of services that Mencap provides, these calls for action are relatively non-specific). What I haven’t seen from Mencap is anything when a Mencap service gets a CQC rating of ‘Requires Improvement’ or ‘Inadequate’, or any reflection on the potential difficulties and pitfalls in trying to run a large network of services, particularly in financially straitened circumstances, or indeed any reflection on whether trying to run a large network of services is itself an obstacle to supporting people well.

Instead, any inconvenient news about Mencap is simply ignored (Mencap are adroit users of silence as part of their communications strategy – the last week being a supreme example). If ignoral looks like it’s not working, then attempts are made to move public critique to a private realm (either via statements that are sent to people individually rather than made public, or via offered ‘private conversations’ to certain people – I was offered, and turned down, one of these, after I wrote a blog about the initial Bubb’s breakfast debacle). An alternative strategy is to deflect accountability by passing the buck to local Mencap branches (as with the involvement of a Mencap governor on the Southern Health Board of Governors, or the continued patronage of MP Stephen Crabb of his local Mencap branch).

To me, this seems like the behaviour of a controlled and controlling corporation, and it makes it hard for me to look at Mencap’s campaigning without applying a lens of corporate self-interest. If Mencap wasn’t a charity but was an independent sector service provider of similar size, would we see these campaigns as a branch of self-interested lobbying? The strapline Mencap uses for itself, “The voice of learning disability”, implies a market sensibility – are other voices of learning disability competitors to be squeezed out? (only one organisation can be ‘The Voice’, as Saturday night TV has taught us). This is quite apart from this strapline ignoring People First campaigning over many years (the recent glossy launch of ‘Learning Disability Voices’ – all service providers, including Mencap – shows the direction in which voices can apparently be stretched).

Who sets the terms of Mencap campaigns? What are these campaigns trying to achieve? How would we know if the aims of these campaigns have been achieved? The final question in particular may be impossible to definitively answer, and from my particular glass house of questionably pointfull activity I don’t wish to throw stones, but I do think it’s fair to expect public reflection, engagement and challenge on these issues. It’s hard to know about any of these quandaries from looking at the Mencap website – there is little public reflection or debate on any of these issues, and the public face of Mencap campaigns seem to follow the same corporate logic as the rest of their activities. There is also little evidence that Mencap support other campaigns which they have not initiated and do not control (such as #JusticeforLB or more recently #7daysofaction), either in terms of visibility or putting their muscle to work in support of these campaigns.

Third, a number of people have suggested that then (the 5^th anniversary of the Winterbourne View Panorama programme) was the wrong time for George to ask questions about Mencap. There seemed to be a couple of issues here. One was that this apparently diverted attention from the Winterbourne View families (although 4 families signed the letter organised by Mencap, none appeared on the Victoria Live programme and I don’t know why this was, although another family member of someone who had been in an inpatient unit did appear) and the issue of inpatient units in general. Another issue was that asking questions about Mencap diverted attention from a valuable media opportunity to hold the government to account. I have a few thoughts about this:

1. There has never been a ‘right time’ to enter into a debate with Mencap about any of these issues. Such questions about Mencap (as about a number of large charities) have been rumbling around for some time, and Mencap has never engaged with them, consistent with their corporate communications strategy above. When would have been a good time?
2. I don’t think the ‘hook’ of the 5^th anniversary of the Panorama programme was particularly significant to the government (although it should have been) – they generally seemed no more concerned than  on the 3^rd or 4^th anniversaries, and a range of issues concerning the scandalous mistreatment of people with learning disabilities seems to be making it into press, TV and radio less infrequently. Any political imperatives lie elsewhere (particularly with pledges Simon Stevens of NHS England made to the Commons Public Accounts Committee, for example, in my view), and a generalised call ‘to the government’ suggests campaigning is being performed without any specific aims in view.
3. The ‘resilience’ of inpatient services in the face of policy strictures, concordats and programmes to reduce their number is grimly impressive in its way, and the #JusticeforLB and emerging #7daysofaction campaigns (see this excellent new documentary from @DimitriadiSophi https://youtu.be/n3hqZ2jkvns ) are right to focus attention and action on this. Both campaigns are strongly of the view that inpatient services cannot be seen in isolation, however. They are the end-station of a system that does not support people and families in their aspirations, treats human rights as optional extras, and is less than indifferent to people’s early deaths. I think people generally (and need to) see more than one thing at once.

Fourth, I’m very confused by the opprobrium heaped on George for undermining the ‘unity’ of the ‘voice of learning disability’ by asking questions and expressing a different viewpoint (isn’t this exactly the ‘thought diversity’ beloved of management wonkers?). As a number of people have pointed out, such diversity is both inevitable and to be welcomed, rather than suppressed. For me, unity does not mean doing whatever Mencap says (again, the totalising ambition of being ‘the voice’). My limited reading about the processes by which ‘successful’ civil rights and other campaigns have operated included diverse groups agreeing and working together on a small number of central campaigning aims and strategies, while disagreeing about a lot of other things. If this is right (and I’m on very shaky ground here), then Mencap and other large charities would be only one of many ‘voices’ around any such table, and would be contributing their resources to rather than controlling any such campaign.

This brings me to my last point, which was raised by George in the Victoria Live discussion and has been mentioned by other people too, that people with learning disabilities were the objects of the discussion rather than active participants in it. Part of my reluctance in writing blogs like this one recently (as opposed to blogs describing information) is that they occupy space that should more properly be occupied by people with learning disabilities. I am lucky enough to have met a substantial number of people with learning disabilities who are more than ready to take on the leadership of a national campaign, developing the kind of alternative positive vision needed and making it happen in practice. What are the elements of that vision, and what should the strategies and tactics be? I don’t have a clue, and it’s not for me to say. It’s for people with learning disabilities to come together and kick some serious political butt, with others only collaborating/contributing if they are called upon.

Compared to many/most organisations involving people with learning disabilities in England, Mencap has worked very hard (through continuous fundraising) to get to a point where they have undoubted campaigning resources and muscle – for example in their connections with politicians and elements of the media. I would say that some of their campaigning has been really important in raising issues that had been (and continue to be) swept under the carpet, notably ‘Six Lives’ (death by indifference). Many (but by no means all) of their services provide good support to people with learning disabilities, and Mencap have provided invaluable support to some families (but not to others). Wouldn’t it be great if Mencap put some of that muscle at the service of emerging groups of people with learning disabilities working to take power, rather than seeking to control everything they are involved in? If they don’t, I can see politically savvy people with learning disabilities simply bypassing Mencap altogether and treating it as an establishment irrelevance. The voices of people with learning disabilities will not be denied.