The anger and rage around the appointment of Stephen Bubb continues to play out in social media. Bubb, himself, feeds the fire, effortlessly with no need for further comment. The set of comments on my previous post (and on many posts on this blog) provide illustration of the consistent fight, fear and disempowerment of learning disabled people and their families.

Around 16 years ago now, I first met Fran, our advocate, through what we thought was a groundbreaking new initiative by the local authority. The ‘Parents Advisory Group’ (PAG). Wow. We were ready (we thought) to challenge the world of ‘special needs’ and bring about change. Such naivety. We thought nothing of the parents ahead of us in this new and strange world.

Earlier this year, Bill Mumford came to meet a group of Oxfordshire parents and allies including Pat and other carers, who had decades of caring experience. It was more than apparent that the fight had been fought, without sniff of victory, over and over and over again. The balance of power firmly in the hands of the provider (NHS or otherwise), commissioners, local authorities and staff who can, with ease, draw on the devastating tool of ‘contact’ and worse to control dissenting voices.

Right now, we have a bit more welly than we did back in the days of PAG. We have a platform not previously available to the likes of Pat (although she, and many others like her are still standing ready in a way that makes me weep at their undented commitment in the face of decades of fuckawful fighting).

It’s kind of fascinating to see the fire fighting techniques of the conventionally powerful (including big charities) at the mo to #justiceforLB. Apologetic (lay) name dropping blog posts, press releases, personal emails/DMs, tweeted ‘concerns’ or ‘pleas’ to unite rather than fragment, meetings involving a cherry picked few to neutralise/counter mobilise.

In addition, we receive genuine and heartfelt messages of support from some. Outraged and frustrated by unfolding events and complete lack of action.

Earlier, George Julian reflected on how we’re damned if we do and damned if we don’t in terms of engaging with discussions around the latest shambolic developments. Mark Neary has pretty much captured all that needs to be said in his post; ‘So tainted, it can only do more harm than good’. We ain’t being divisive or difficult (a pretty offensive insinuation, given that the only division throughout #107days was the deliberate lack of involvement by any big charity other than the NAS*). We all know that this new steering group is not going to lead to any effective change. It will simply eat more time (not nosh anymore, I suspect) with talk. Years and years of talk.

It was an error appointing Bubb. One he underlines with each post. One that is documented in various posts and tweets. A very public error. One which will be analysed and written about in future dissertations/research projects. The beauty of social media is that voices of dissent can’t easily be silenced. And remain visible. A very public record.

So. For the record, we have no alternative agenda or conflict of interests. We simply want effective change. Not one member of Bubb’s merry band can say that.

*Ironically the likes of the NAS and Mencap were set up by raging parents.

Being a bit buffeted around the houses at the mo with the various happenings around the various non happenings around what’s (not) happened. Yep. A year on and … ? Not an awful lot really. Though a lot on paper. The wheels of justice and accountability seem to turn anti-clockwise when it comes to learning disabled people.

I heard tonight that Rodgers Coaches who dedicated three red double decker buses to LB have dedicated a fourth. Apparently the sign writer won’t take payment.  As the legendary Mrs Buhweet says ‘give a person a chance to show their humanity, and they will’.

Here’s to what you can do. If you can. And you do it.

To Linda Rodgers, Mrs Buhweet and the sign writer. Who show how it can and should be done.

Bill Mumford resigned from the Winterbourne JIP today after a second incident of abuse was discovered at a MacIntyre school. Media coverage of this largely focuses on the impact on the (failing) Winterbourne JIP. Abuse schamuse really. No flicker of interest.

Odd, given this is what sparked the setting up of the Winterbourne JIP.

Why is this? Why’s the discovered/alleged abuse of learning disabled kids or young adults largely irrelevant in the reporting?

Naming these incidents ‘safeguarding issues’ probably contributes. It sounds so benign compared to the graphic images portrayed in the Panorama documentary. Combined with the swift shutting down of any discussion about it. Only a few days ago, Mark Lever, Chief Exec of the National Autistic Society wrote a moving piece about the importance of providers’ sharing occasional failures openly for #107days.  He pledged to convene a roundtable with providers to explore this further. Openness has to be the way forward. Bill Mumford today said that MacIntyre have been asked not to make any further comment while the police investigation is underway. Bill published a similar statement on the Local Government Association website about the first incident in which he discussed stepping down from the JIP.

I’ve been thinking about this whole keeping schtum while investigations are being done recently. We’re blanketed by investigations at the mo. Staff (possibly though still haven’t been informed), police and a serious case review. You’d think my posts would be looking like the set of redacted emails from Sloven. Or my blog would have been disappeared.

Nah. Seems like I can say quite a lot about what happened without the earth caving in. Not everything. But quite a lot. So I’m left thinking (and please, lovely legal eagles who stumble across this blog, feel free to send me a short, sharp ‘shut the fuck up tedious, raging woman‘  if necessary) that the ‘can’t possibly say a word till after the investigation/trial/inquest/’ is a bit of a tool used to control and silence people. And contain the truth.

More than happy to be put right on this.

That there are continued instances of abuse, over decades now, seems to call for a bit more openness and transparency. And something else. The traditional processes clearly ain’t working.

Rich and I went to the All Party Parliamentary Group on Learning Disability this afternoon in the Houses of P. Reporting on progress from Winterbourne View. Lord Rix chaired. Phil spoke movingly about his young son Josh being so far from home. Hazel Watson from NHS England talked about what was being done (as ever, being done, rather than done) about closing assessment and treatment units (ATUs). Viv Cooper from the Challenging Behaviour pulled up the Winterbourne Joint Improvement Programme for non-action across three years. The Executive Director from the LGA (who?) said words. I was reminded of washing LB’s hair. Water bouncing off with none penetrating his thick and unruly mop. Words. Bouncy bits of water. Doing nothing.

I stopped listening and thought about bath times.

Norman Lamb, Minister of State for Support and Care talked the talk. Passionately engaged with trying to get people out of ATUs. What are the obstacles Norm?

1. Absence of information about who is in them. [in hand]
2. A lack of senior people in NHS England responsible for the programme. [changed since March with Jane Cummings/Hazel Watson taking responsibility]
3. A reliance on psychiatrists making clinical judgements about placements when they are paid by the service providers. [brain melt]
4. Problems around funding and funding flows. [an apparently insolvable problem]
5. An ingrained culture in which learning disabled people aren’t seen as equal citizens. [It’s up to all of us to change this one].

Ok. We know the issues. What’s going to happen? Er, fuck all by the sounds of it. Norm has his hands tied apparently. Hugely frustrating n’ all, but those local clinical commissioning groups/local authorities are a plinking law to themselves (paraphrasing a bit here). There are no local services to support the release of people. People aren’t released because a) containment is a cash cow for providers and b) local authorities can’t suddenly stump up the costs for newly released people.

Eh? Sorry Norm, but if you can’t do anything to change things, who can?

*tumbleweed*

In the room were a largish group of parents. A group of parents who, between them, had enough atrocity stories to sink a battleship of pointless talk and no action. And that’s without chucking in the fact that LB died [he died?]. In the small amount of time left for questions, completely harrowing experiences were lobbed at the panel in Committee Room 4. Overlooking the Thames and the London Eye. Each story should (and would) have led to criminal proceedings if they had occurred outside ATUs. Stories of abuse/assault/neglect and fear. Against people who are not listened to or able to fight back.

This being a British affair, the atrocity stories were comfortably absorbed without visible shaking of etiquette. LB’s death even popped up in the discussion as something unspeakable but at the same time, a little bit of a ‘fable’. A work in progress version of a horrific event acknowledged but, at the same time, written out of the landscape. Our dude has made it to the parliamentary table, but with a particular coating. A ‘move on and thankfully not mainstream news’ coating.

We went to the pub. And chewed over next steps with Mencap and the Challenging Behaviour Foundation. A shared recognition of the scandalous/untenable position that is.

Yep. And?