Week 15: The Tale of Laughing Boy #107days

So we’re here again, the end of #107days for the second time. It is hard to believe it’s now two years since LB died. There really aren’t any words. Today we’re pleased to be able to share The Tale of Laughing Boy with you.

Produced by the brilliant My Life My Choice and Oxford Digital Media, with funding from Oxford City Council, grab a cuppa and sit back to watch.

Thanks to each and every one of you who have supported #JusticeforLB these past two years and both #107days campaigns. As Sara says of the campaign in the film:

‘These people haven’t met Connor, they don’t know Connor and yet they recognise the injustice of what’s happened, they recognise what a quirky and colourful individual he was and they’re acting, and they’re prepared to say this is wrong and join in. I think that’s absolutely amazing, it’s been so heart warming and so reassuring that so many people have stepped up and done all these different things and got in touch, and are really moved by it all. They just get it, I think that’s great, that has meant the world to us’.

As for Sara’s hopes for the future:

‘My beyond wildest dreams would be that… we didn’t even have to talk about learning disabled people, because there wouldn’t need to be that division, because everybody would have a right to live where they choose, everybody has an imagined future, and the distinction between being learning disabled and being non-learning disabled would become sort of irrelevant, because it isn’t an issue’.

Final word goes to Rich:

‘In many respects the world would be a lot better place if we all behaved more like Connor and less like not-Connors; his sort of approach to life was so straight forward and simple… uncomplicated… you just sort of think I wish I could be more like that, I wish we could all be more like that… we should all be more like Connor and people like Connor and the world would be a much better place, and it would be a much more inclusive place, and actually we might all enjoy it a bit more.

Imagine, just imagine for a moment…. and ACT!

Week 15: The best dude #107days

We’re coming to the end of #107days second time around. Last night we had the premiere of The Tale of Laughing Boy, a 15 minute film about LB that we’ll share here on Day 107 tomorrow. Our penultimate post is from Tom, LB’s younger brother, sharing his thoughts and reflections. The photo is a still from the film, pencil out 15mins of your weekend now to enjoy it. For now, over to Tom:

I’ve always wanted to write a guest post, it has always striked me as something I should do. It’s the week of the film and having taken part in the film, my mum thought it would be fitting to do a post on that.

From the minute I heard about the film I was already 100% on board, obviously because I wanted to tell the great stories I have collected from 13 years of living with him and also maybe because I love films… but mainly the first reason. I was surprisingly comfortable in front of the GIANT CAMERA!!!! I think it’s just that if you know the stories from the countless amounts of times you’ve told them and you are talking about something you really care about then your not going to be nervous because you are so sure of everything you will say before you say it.

In some ways it’s fun because you aren’t just telling a story, you are reliving it in your mind, and you feel the same emotions you did at the time. Which, when discussing Connor, is pretty much constantly laughter and happiness.

I always remember Connor’s bus mat… to the average eye it was a map of a town with some roads on it, but to Connor it was Sandford, a huge city with a fully operational bus system that never failed. It had everything a city needs, shops, houses, animals, pedestrians and even a playmobil harbour. Each with it’s own set of strict rules on how it operates and how it can be ‘played with’. Having shared a room with Connor for 10 years or so and listening to the intricate thought process that went in to controlling a town of this magnitude, I can honestly say their is no city better than Sandford and I’m pretty sure I would live there if it was real.

That wasn’t Connor’s favourite city though, London was by far his favourite place on Earth. He loved it, I think it was the transport system to be honest, the idea of a city with a bus going pretty much everywhere was his dream place. One birthday of his we went to the Tower of London, his love of history and London combined, what could go wrong. Well, apart from the fact we never actually got in, huge amounts of traffic meant that after 6 or so hours on buses, when we finally arrived at the Tower of London it was closed. All us kids were so annoyed “all that travel for nothing!”

It was Connor my parents were worried about though, how would he react to the fact we weren’t actually going to the Tower. He did not care one bit, he spent the whole day in London on buses, a perfect day for him. That’s one of the amazing things about Connor, he is so easy to be pleased and enjoys such small things, and it really is amazing.

I read a lot of the stories about how people who never met Connor feel like they know him and that they love him through the tales on the blog, and this really amazes me. To me the idea of someone you don’t know changing your life tends to be a celebratory, writer or film maker. I love to think of how Connor would react if you told him hundreds of thousands of people were reading stories about him and laughing.

I picture him smiling with glee then turning away from his laptop and saying:

“Did they like it, Tom?”

“yeah, they loved it”

“Why?”

At the time this question would annoy me so much…

“Idk Connor!!! the stories are funny”

He would always ask ‘why’ to everything and my 12 year old brain ran out of reasons pretty quickly. But now I know what I would say:

“Did they like it, Tom?”

“yeah, they loved it”

“Why?”

“Because you are the best dude in the world!”

Week 14: Back to Worthy Farm to reclaim our humanity: #JusticeforLB and the productive potential of debility politics #107days

Following on from our last pre-Glastonbury post, today we’re back with more from Dan Goodley and Rebecca Lawthom. A few highlights in snaps are dotted throughout the post, check out twitter for more.

Back to Worthy Farm to reclaim our humanity: #JusticeforLB and the productive potential of debility politics 

Dan Goodley (University of Sheffield) and Rebecca Lawthom (Manchester Metropolitan University)

At lunchtime on the 8^th May 2015, in the UK, the message was clear. The Conservative party were in power. And with a majority. The sense of doom and misery around our university campuses was palpable. Colleagues cried. One, a mother of a young disabled woman, shed tears of sorrow and anger as she struggled to think about her daughter’s future. Others we spoke to were incandescent with rage at the lack of opposition offered by the Labour party. Some, so it seemed, were visibly nervous: what would happen now that the Lib Dems could no longer put any blocks on the austerity measures of the Conservatives? What would become of essential services and benefits that literally were – and are – a matter of life and death for disabled people? What changes would we witness to health, social care and education now that the neoliberal agenda of the government could, as the new Education minister arrogantly proclaimed, be put into strategy and practice without being hindered by coalition politics. To borrow from the words of Lauren Berlant (Berlant, 2004, 2007, 2010, 2011), austerity policies are a particular kind of cruel optimism: an idea that the reduction of public expenditure and the rolling back of welfare necessarily permits the autonomous, ready and able worker to step in (and we mean step in, not roll in) to the breach; to fill the empty spaces left by a receding welfare system. The reality of #austerityasideology is, of course, very different to the optimistic ways in which it is served cold to the masses. As Berlant points out these are contemporaneous times of slow death: people attempting (and imagining) to work themselves out of poverty or towards wealth (and self-sufficiency) but actually doing so in ways that literally wear our their bodies and minds. For disabled people, of course, their deaths risk being even quicker in a time of government welfare cuts, while their relationships with the cruel optimism of work are often complicated. What happens when you cannot work? What happens when you fail? For many disabled people the welfare state provides essential support, recognition and connectivity. Now, as work overtakes care (and we mean care in its most feminist sense of mutuality and interdependence), one wonders what might happen to those left on the peripheries of communities of employment and self-sufficient living. Since the 8^th of May we have felt ever more worried, concerned and angry about austerity. Fortunately, we have come across two sources of hope.

The first is social theory. We are with bell hooks on the transformative potential of social theory. One example of hope is offered by the recent writings by Jasbir Puar (Puar, 2009, 2010, 2011, 2012). She suggests that our contemporary times are marked by debility: the failings of bodies to not only work themselves out of poverty but also failings of bodies to match up to the neoliberal imperative demanded by cruelly optimistic ideologies of advanced capitalism. In this sense then, as we have argued elsewhere along with our mate Katherine Runswick Cole (Goodley, 2014; Goodley, Lawthom and Runswick Cole, 2014), all of us (whether disabled or not) are scarred by forms of neoliberal-ableism: standards of working and consumption that we all fail to match up to. But, this notion of failure is recast by Puar as a possibility: a shared identity and political position of debility. This got us thinking; what does a politics of debility look like? How might we harness it, come together and collectively agitate around a politics of debility?

Answers to these questions were offered by a second source of hope: a coming together of Glastonbury music festival 2015 (at Worthy Farm, Pilton, Somerset) and the disability campaign JusticeforLB.

Who is LB?
LB is short for Laughing Boy, the name used online for Connor Sparrowhawk.
Connor was a fit and healthy young man, who loved buses, London, Eddie Stobart and speaking his mind.
Connor had autism and epilepsy.
On the 19 March 2013, he was admitted to hospital (Slade House Assessment and Treatment Unit run by Southern Health NHS Foundation Trust).
He drowned in the bath on 4 July 2013. An entirely preventable death.

This week will mark the second year anniversary of his death. And still there has been no adequate apology nor acknowledged accountability on the part of those responsible for LB’s death. Read that again; ‘an entirely preventable death’; the findings of an independent report. LB’s mother and disability studies researcher Dr Sara Ryan reported in a recent blog on Updating the Update. Of the update. In this post she recaps ‘progress’ so far, summarising:

So. That’s it really. When we sadly started #107days again this year, we naively thought some of these investigations would be completed during this time. It’s now clear that this ain’t going to happen.

It’s all a pile of cock rot really.

A pile of cock rot indeed. In contrast, the JusticeforLB campaign has demonstrated a collective integrity and affirmative quality since its emergence as a response to LB’s death. Our family, the Lawthom-Goodleys, have had the chance to offer a tiny contribution to the campaign and this is what we wrote for the campaign website on the 24^th June.

On Monday of this week we returned from the festival. It was a huge success in terms of raising awareness of LB’s campaign. We managed to wade through mud, rain showers, crowds, Florence and the Machine, The Sleaford Mods, Pharrell, Suede, noodle bars, beer tents, hippies, pill heads, Green activists, mashed up punters, the whole smorgasboard of humanity that appeared to fill the hills, tents, toilets and valleys of Glastonbury. And we spoke, connected, shared and raged with a number of revelers. These included …

• The awe inspiring @StayUpLateUK – an organisation set up to support the night time partying activities of people with learning disabilities. Their stall in the Greenfields offered to punk and funk up the outfits of Glasto-goers whilst simultaneously raising issues of inclusion. We loved their t-shirts. Especially the one that read ‘Who the funk voted Tory?’

• An engaged Greenpeace activist whose conversation started with a consideration of over-fishing and ended with thoughts on another aspect of sustainability: that of the human race in a time of welfare cuts.
• A sobbing social worker who told us that she had spent the whole festival looking for the #JusticeforLB flag only for us to fortuitously stumble upon us in a late bar near the Pyramid stage as we avoided the Kanye West crowds. We shared a tear and some profanity together for a while.
• Numerous inquisitive strangers who approached to ask about the flag – ‘We’re glad you asked’ we told them when they approached us. ‘I’m glad I asked’ was a common response. As was a bearhug. And a kiss.
• A mum who had lost her daughter to illness and told us how she had tried to fight the system in court. All she had wanted then was a sorry. And now that had not come she was after something more; justice.
• A chap who was worried about social care – post election – for his own mother and could therefore, as he put it, totally empathize with LB’s campaign.
• And then, just when we thought it could not get any more productive in terms of our festival activism, LB’s flag was found by his sister and she came up to find us. So we danced around LB’s flag, together, for a while. #Legend.

All of these stories of engagement illuminate a particular kind of collective activism and agitation in a time of austerity. And at the epicenter of this activism is the JusticeforLB campaign. The campaign and our human encounters described above capture the potency of coming together around a politics of debility. This is a collective that brings together many people who have become the human collateral of years of poor welfare provision, disabling conditions of everyday life and latterly, the effects of austerity. This is a collective that has care, respect, welfare, support, recognition, humanity, interdependence, mutuality, fairness, justice as its leitmotifs. And these are all elements of our shared debility, vulnerability and dependence on one another.

Tragically, LB’s death was not slow. It was quick. It happened in a short space of time in an assessment and treatment unit. Here is another institution bound up in the lies of cruel optimism: that asylums will rehabilitate inmates. That service users will become active producers. That clients will become citizens. Perhaps we know one good thing about austerity and the cuts: that poor institutions will be closed down alongside good ones – but this is really is like searching for gold dust in a cesspool of shite. JusticeforLB brings together many of us fighting austerityasideology under a banner of debility because LB starkly illustrates the kinds of human beings valued or negated by neoliberal-ableist capitalism, in a time of cuts. LB’s death is not simply about the politics of disability, nor the self-advocacy movement, nor the activism of families and allies. LB’s death strikes at the very heart of a time of debility that is ever more enforced through the lies of austerity as necessary to reduce national debt and to make individual citizens responsible for their own lives. We are all austerity bodies now. And we all risk being jettisoned from narrow forms of citizenship that cling to ableist framings of what it means to be human. But surely, isn’t being human more than working hard and shopping enough? It is about reclaiming our communities; finding moments of connection and developing new conversations with would-be comrades.

This reclaimed community sounds a lot like Glastonbury festival. We are firmly of the view that reclaiming our humanities in a time of austerity is absolutely essential. And LB, his family and their allies have shown us a productive way forward. Now is our time of debility politics.

Finally, as a wonderful aside, it is worth noting that as we were making our way down to Glastonbury on June 24^th, Disability protesters stormed into parliament to voice their anger at government plans to cut the Independent Living Fund.

Ha! #Legends. It would seem that this debility movement, to use the masters terms, has some legs to it.

References

At the main stage:

#JusticeforLB http://justiceforlb.org/
#107Days https://107daysofaction.wordpress.com/

On the smaller stages:

Berlant, L (2010). Cruel optimism. In M. Gregg and G.J. Seigworth. (Eds). The Affect Theory Reader. Durham, North Carolina: Duke University Press. (pp93 -117)
Berlant, L. (2004). Critical inquiry, affirmative culture. Critical Inquiry, 30 (2), 445-451.
Berlant, L. (2007). Slow Death: Sovereignty, Obesity, Lateral Agency. Critical Inquiry 33, 754 – 780.
Berlant, L. (2011). Austerity, Precarity, Awkwardness: Blog posting. Retrieved on 14th May 2013
Goodley, D. (2014). Dis/ability studies. London: Routledge.
Goodley, D. Lawthom, R. & Runswick-Cole, K. (2014) Dis/ ability and austerity: beyond work and slow death, Disability & Society, 29:6, 980-984, DOI: 10.1080/09687599.2014.920125 .
Puar, J.K. (2009): Prognosis time: Towards a geopolitics of affect, debility and capacity, Women & Performance: A journal of feminist theory, 19 (2), 161-172
Puar, J.K. (2011). “Coda: The Cost of Getting Better: Suicide, Sensation, Switchpoints.” GLQ, 18 (1), 149–58.
Puar, J.K. (2010). Ecologies of Sex, Sensation, and Slow Death. Periscope, 22nd November 2010.
Puar, J.K. (2012). Precarity Talk: A Virtual Roundtable with Lauren Berlant, Judith Butler, Bojana Cvejic;, Isabell Lorey, Jasbir Puar, and Ana Vujanovic, TDR: The Drama Review 56 (4), 163- 177.

Week 14: The return of the #JusticeforLB flag #Glasto2015 #107days

Week 14 is the week of Glastonbury and the return of the #JusticeforLB flag. Today’s post is written by the Lawthom-Goodleys, Dan, Rebecca, Ruby and Rosa, and we share it as they make their way to Glastonbury. Keep your eyes peeled for them and do share your pics #JusticeforLB #107days.

Going to festivals is one of our family’s true loves. We love the mess, the carnage, and the mass humanity of these places. And the cider is not bad too. Glastonbury is, of course, the mother of all festivals and we have managed, luckily, to get our Northern souls down south for a number of years. For the majority of those trips our main concern, prior to driving the long trip down from Yorkshire to Glasto, has been the weather. You see, we don’t mind the rain. But if it pisses down all the time, everyday, without respite, then it can be very hard work (to say the least). We find rain and latex tend to go badly together. But less about our party outfits. This year, our main concerns are two-fold.

First, we are worried about our flagpole: does it boast the endurance and flexibility to last the hours of use of an extended weekend? The reason for our initial worry? Well, the latest flagpole incarnation (bought from the reasonably priced and well stocked Pontypridd Caravan and Camping – Google it) has the huge responsibility of hosting the JusticeforLB flag. The great dude’s flag and face found fame at last year’s Glasto: meeting many festival revelers and getting posted on the front page of the BBC Glastonbury website. In a tiny way we were able to contribute to the wondrous – though of course totally unacceptable to have to happen in the first place – JusticeforLB campaign. We were able to share LB’s story with total strangers. We found ourselves in some important conversations with Glasto goers. Not one person showed disinterest. Not one person suggested to us that we were ruining their hedonistic time off from work. Each and everyone we spoke to wanted to know about LB’s story. And they were on side. And, when they said their goodbyes, they were happy to shake hands or hug and agree with the social justice that the campaign was (and still is) seeking.

But this leads us to our second concern as we return this year: a quandary over explanation. How do we possibly explain the incredibly insensitive, depoliticized and inhuman lack of institutional response to LB’s death? A year on from the JusticeforLB campaign and now into a new campaign that pushes for the LBBill (amongst other things), how do we explain to our newfound Glastonbury friends (ok, maybe acquaintances and some of them inebriated at that) that we are still now, in June 2015, seeking justice for LB and his family? Moreover, how do we put across to people that LB’s life remains violently under-valued by institutional lack of responsibility and accountability? That replies from MPs to campaigners’ requests to support the bill are carbon copy party written responses?  How do we push the agenda as far as it should go: that people with learning disabilities continue to be considered as less than human in our society?  And, here is the nagging anxiety, how easy will it be to push the message of JusticeforLB that disabling society needs to change NOW: especially when so many of us are still trying to get our heads around the fact that loads of people (ok, mostly in England) voted for a government regime that is putting #austerityasideology before the real needs of all citizens? How do we articulate the key message of the campaign: Justice for all the dudes and dudettes?

We think we can address the first concern. We have bought the flagpole from South Wales so, as Rebecca rightly reminds us, the quality will be second to none. Furthermore, this year we will make sure that we don’t ask a total stranger to hold the flagpole for five minutes while we pop to the washroom (an hilarious euphemism for any loo at Glasto). They might drop it. And then scarper; leaving the pole on the ground by the John Peel stage (just before Clean Bandit) only to be found on our return. Like last year. Tossers. So, for this year, only members of the Jones, Hopkins, Dennis and Lawthom-Goodley families are entrusted with that job and the following clear instruction: hold the bloody flag steady (and do not let it waver) nor give it to someone who pretends to like Clean Bandit (or worse, Paul Weller). Or else, we will steal your dry poncho (or even worse not buy you cheesy chips later).

The second concern is trickier to address. But here is an initial idea. We will start the process of chatting about #JusticeforLB and the #LBBill by the Tony Benn Tower in the old Left Field stage. This is a wonderful space – the truly sacred space of the festival – an ideal location for a discussion. A chat. And a dialogue that seeks not to be throwaway but tricky, shitty, difficult and emotional. But fundamentally a conversation about what it means to be valued as a human being.  Never have we missed Tony more than on the day after the 2015 election result. His clarity of expression about equality and the need to contest oppression has been conspicuous in its absence. We reckon that Mr Benn would have been a huge supporter of LB’s campaign and his legacy. And so we will start our meetings with Glastonbury right there by the Left Field stage that Tony always owned like the rock star that he truly was. In dreamland we would, of course, find ourselves hearing the background noise of The Divine Comedy playing a secret set…  but we are getting ahead of ourselves.

So, please look out for coverage on the BBC: to see LB again flying the flag for social justice. And of course, keep writing to those MPs. And ask for bespoke responses. Surely a little humility from them will not go a miss.

And the good news is this… we have decided that the general forecast for Glasto is going to be absolutely wonderful. We are expecting tropical conditions: all day and everyday of the festival.

We’ll let you know how we get on.

#JusticeforLB

Dan, Rebecca, Ruby and Rosa

xxxx

Week 13: What I learned from 10 weeks working in a large disability charity head office #LDWeek15 #107days

This post offers personal reflections about an experience just over two years ago. It is my (George Julian’s) opinion, reflections and memory. I offer it as food for thought for #LDWeek15 as JusticeforLB Week 13 continues to explore whether charities are part of the problem.

This post is not an attack on all (or any) charities for an attack’s sake; it is not fiction or exaggerated; it does not question the intention of the many, many excellent people who choose to work for a charity, although it does question the blanket assumption that all who do are quasi saints! I’ll come to that point.

My experience

After eight years working in a (very) small national organisation, trying to make a difference to people’s lives within many constraints, not least working underneath the umbrella of a very confused, multi-purpose charity, it was with joy in my heart and a spring in my step that I pitched up for the first day of a maternity cover post in the (self-named) leading learning disability charity in the UK. I was due to hold the position of Head of Research and Impact, a perfect match for my skillset and professional expertise and qualifications. Having completed a PhD looking at the education of profoundly disabled children over a decade previously, I was delighted to return to the learning disability arena and confident with a focus on research and impact had a contribution to make.

My experience was short lived however and I left after 10 weeks. There were many reasons for this, including large scale restructuring within the organisation and my complete disillusion with what I found, compared to what I’d expected!! The thoughts that follow have percolated over the last two years and I offer them now for debate and discussion.

I have written a series of general statements that emerged from my experience, I’d welcome your contributions and comments and would love to receive examples of where my generalisations are misguided, I genuinely hope a lot of them are.

1) It is incredibly difficult to critique a charity I’m not sure whether this is a uniquely British stiff upper lip, terribly polite, hold our resolve thang, but it seems to be incredibly difficult to in any way to critique the work of a charity. Invariably it is met with at least some suggestion or kick back that you’re somehow a) being unfair b) denigrating the brilliant people who choose to work for charities c) are unaware of their exceptional work and so on, and so on.

2) It is also difficult to be a dissenting voice within a charity I suspect for some similar cultural reasons as are at play in the first point, together with an unhealthy dose of confirmation bias, it is hard to truly challenge within the hallowed walls of head office. A relatively new CEO and a senior management team looking to assert themselves all too readily overlook those within their teams, rushing to squash autonomy in favour of compliant flag wavers for their latest strategic plan.

3) Not everyone who works in a charity does so because they believe in the charitable cause, nor are they necessarily exceptional at their job Pretty much like any organisation, there are good and bad within charities. A quick glance at charity accounts will show that this doesn’t always come without a cost, seemingly huge amounts of charitable funds are spent on redundancy or termination payments.

4) Not everyone in a charity is poorly paid I’m not for a minute suggesting that they should be either, however, if your CEO is taking home over £100k I’d sort of expect them to be bloody good at their jobs, and at the very least for the charity to be effective and innovative.

To give you some perspective on this, I had a quick look at Mencap’s 2014 Annual Accounts and can share that their senior management team salaries minus pension contributions (I assume it is them given they’re all on £60k plus) are as follows:

£60–70k: 8 staff members

£70-80k: 6 staff members

£80-90k: 2 staff members

£90-100k: 3 staff members

£100-110k: 1 staff member

and presumably the CEO, one staff member, takes home £130-140k.

These are not insignificant figures, and this total spend on large salaries, sits alongside 7 staff members who took home over £60k when including their termination payments (1x 60-70k, 3x 70-80k, 2x 90-100k and 1x 110-120k).

5) Excessive staff turnover or excessive staff retention – pick your poison The uninitiated may look at the salaries and termination payments above and consider 2014 an unusual year, a new CEO obviously changed the strategy at Mencap.

However a tiny dig beneath the accounts surface reveals that in addition to the 7 staff members taking home over £60k including payments when their contracts were terminated in 2014, there were 5 in 2013, 13 in 2012 and 11 in 2011.

If we assume a mid range payment in the bands offered that’s £595,000 in 2014, £615,000 in 2013, £960,000 in 2012 and £975,000 in 2011.

How can any organisation defend such waste?

6) Large, national, leading charities are no more organised, slick/devoted/competent than many smaller charities or organisations with tiny staff teams Perhaps the biggest shock for me on arrival in head office was how inefficient, uncoordinated and generally uninspiring life was. I’d fantasised about a large charity being a slick operating unit, about IT services being efficient, strategies and action plans being in place, coherent strategy and measurement processes. Who knows, maybe it is unrecognisable in its progress over the last two years, but my experience was of a chaotic and confused organisation that struggled to understand what its priorities were, never mind any of the rest.

7) Business and turnover are key In one way you could argue this is par for the course, a sign of our times, inevitable – that business should dominate charitable activity. Indeed, given the salaries paid for the management team, you’d almost welcome efficient and competent business drivers underpinning all activity, that could then ultimately improve the lives of the people it is meant to support. The reality in my experience was that money talked, anything could be written into a funding bid to secure funds, that was more important than due diligence of the activity that followed. I suspect my experience was in no way unique but it appeared that on too many levels the money tail was wagging the dog; projects and bids were devised to meet funding calls, strategic plans (where they existed) were adapted and tweaked to meet a newly funded ‘need’.

I’m no business expert, it’s not for me to say whether this is an appropriate course of action or not, I’ll leave you to make your own mind up. That said, if you have no vision, or if your vision is embedded wherever the latest pot of money is, rather than where your end beneficiaries are, you probably shouldn’t call yourself a charity!

8) You can hide anything you like with ‘good’ reporting and messaging Call me naïve but I desperately wanted to believe that the focus would be on the charitable aims I’d researched before deciding whether to take the post; campaigning, improving people’s lives, supporting learning disabled people – what’s not to like?

What I observed was that reputation was key; managing the message was as important (if not more important) then delivering on quality or improvements for learning disabled people.

If any charity believe in what they stand for, then just get on and do what you’re aiming for. For example, if your focus is on supporting learning disabled people to get work, employ them. Not one or two tokenistic people who can be sat on the reception desk and brought out for public events, I mean really employ them. If you can’t manage to walk the walk within your own organisation how the hell do you expect the rest of society to? Which leads me to my penultimate observation…

9) Beware of values that are for wallpaper not for living by! Everywhere I looked during those ten weeks I’d see value statements, they were stuck on the walls, in the lift, on the screensaver that flickered across your laptop; bold, ambitious, optimistic values, but to be honest that’s where they mostly stayed. If you have to plaster your values everywhere then they clearly aren’t embedded within your organisation.

My experience, and I’d go as far as to say those of many other colleagues there at that time, did not reflect the values being espoused. If you can’t treat your staff well, if you can’t treat the beneficiaries of your charity well, if you can’t actually make progress to what you’ve been talking about for years, maybe it’s time to shut up shop, redistribute the wealth and let some others have a go.

10) Stop speaking for – give up the power I’m not sure how anyone can be the ‘voice of’ or how it helps. Maybe it’s time to stop speaking for and just give over the power.

Week 13: Does awareness raising go far enough? #LDWeek15 #107days

Today we find ourselves in the middle of Learning Disability Week 2015 #LDWeek15. We thought we’d use Week 13 to ask a question which many seem very uncomfortable with, are charities part of the problem? We’re starting off with questioning awareness raising.

So, what is Learning Disability Week I hear you ask?
It’s an awareness week run by Mencap, who simultaneously advertise themselves as ‘the UK’s leading learning disability charity’ and ‘the voice of learning disability’. Quite some accolade to give yourself, and quite a claim to live up to.

Each year for Learning Disability Week Mencap pick a theme for the week and seek to ‘raise awareness’ of the issue in hand. The week has traditionally been in June, although there was a slight detour into August in 2013, but business as usual returned in 2014.

What does LD Week focus on?
Each of the issues that feature in LDWeek are an existing Mencap campaign or priority, so if you were to take a cynical view one perspective could be that they are using a national awareness raising week to raise the profile of their organisation and do work they’re committed to doing anyway. Regardless of that, let’s take a look at the focus for the last few years:

2009 saw a focus on accessible toilets and Changing Places

2010 was equal healthcare and ‘Getting it right’

2011 turned the spotlight on Disability Hate Crime

2012 stuck with Hate Crime; perhaps there was a delay in planning, or no other issues that needed attention given toilets and healthcare were ‘done’.

The CEO at the time stated: “The reason we went back to the issue this year, is because we’re making good progress,” he explained. “We’re making great progress on working with the police in a way that will lead to a steady reduction of hate crime and a tackling of the perpetrators. There’s much more to do, though”.

2013 took a slightly surreal turn about, where presumably having sorted hate crime, healthcare and toilets it was time to celebrate. The August week focused on, wait for it, superheroes!

Who is your superhero? Celebrating families ‘amazing, brave and selfless people’. Which is an interesting way to frame learning disabled people and their family members! We’ll come back to that later.

2014 stuck with a theme of celebration, after all there were obviously no burning issues that needed raising awareness of in these two years.

The billing for the week asked: Do you remember your first? We asked you to celebrate people overcoming adversity, and people’s prejudice and ignorance to experience their incredible firsts.

2015 Bringing us up to date, this year the tone is less party and more traditional with a focus on Hear My Voice and listening:

We’re reaching out to the newly-elected politicians and people in a powerful position to tackle the myths and misconceptions about learning disability that fuel prejudice and inequality.

What format do these awareness raising weeks take?
A quick search on the internet will provide you with a range of approaches to raising awareness during LDWeek, with some grassroots activity across the UK.

That said there is also a bit of a format at play, whereby every year Mencap Head Office beam with pride as they celebrate the success of learning disability week (usually by the Friday on their website or early the next calendar week) that involves:

a) a London launch event or soiree at Westminster
b) a few mentions in the media
c) a new film or media soundbyte to use
d) some airy celebrity promises of support
e) a Charter or commitment for people to sign up to.

Anyone with a rudimentary knowledge of measuring impact would be able to see that these blogs ‘celebrating success’ are focused purely on activity and not on impact or outcomes.

The other consideration is positioning; what message is being shared about learning disabled people and their lives? Are we celebrating them as superheroes? Really? I’ve yet to meet a superhero, learning disabled or otherwise. Are learning disabled people and their families brave, overcoming adversity, pioneering?

Or are they just like you and I. Human beings, wanting human rights. No more, no less.

A question of impact
So all of this activity leads to what exactly? It’s not for us to offer an answer, we’re simply asking the question, but we would like to hear about the impact of such a large amount of focus.

While it is no doubt reassuring to the senior management team to tick a box on the annual strategic plan, and external profile raising never goes a miss, one can’t help but wonder whether all this talk and awareness raising leads to very little change.

Later this week we’ll take a look at charity accounts and some of the positioning of charitable activity. All thoughts and contributions very welcome as ever, drop us an email if you’d like to blog on this.

Week 12: I wrote 11,962 words on Southern Health’s crap communications so you don’t have to #107days

Ally has written a corker of a blog post for Week 12 that needs no more introduction:

Hi everyone! Just to give a bit of background to this blog, I’m Sara’s niece and I’ve just finished my linguistics degree in Leeds. During my final year at university, I had to write an 11,000-word dissertation. Or more specifically, I wrote about the transitivity and non-apologies in the communications from Southern Health to Sara, Monitor and the public, and how these structures were manipulated to assign responsibility for the positive and negative actions detailed in the texts.

The transitivity system deals with where participants are positioned in a sentence, and this can be changed to emphasise or hide these participants. For example, in an ‘active’ sentence like Sara wrote a blog, the ‘actor’ is Sara, and she writes the ‘goal’, which is the blog. Sara is positioned first in the sentence, so she is emphasised. In a ‘passive’ sentence like The blog was written by Sara, the blog is first and Sara is second. This hides Sara’s responsibility for the writing behind the blog itself, so the blog is emphasised. Passive sentences can also appear without an actor, e.g. The blog was written, where nobody is shown to be responsible. Active and passive sentences are very common and don’t always suggest deliberate manipulations of participant responsibility… but often they do, particularly in newspaper reportage.

Non-apologies are especially common in situations where public trust is at stake, such as from institutions and politicians. Non-apologies suggest that they are following social norms and expectations that they will apologise for what is perceived to be some kind of offensive act, but actually avoid performing a proper apology. Non-apologies come in several forms, but in general terms they can suggest that an apology will come or has already come, e.g. I want to apologise, or I have apologised, which doesn’t actually perform the act of apology. Non-apologies can also be selective about what they apologise for, such as I apologise for this distress, but not the act that causes the distress, or I apologise if this caused any confusion which dismisses the idea that anyone should have been confused.

The texts I analysed were the infamous Katrina Percy letter, the follow-up letter from Simon Waugh, the briefing note to Monitor (all on Sara’s blog), and the public statement that was issued after the Verita report was published. From these I chose the statements referring to positive events, such as improvements to services, previous good care etc., and the negative events such as LB’s death and the general failings of the unit.

My analysis compared the frequencies of features across positive and negative statements, including:

• Who was emphasised as being responsible and who was hidden in positive and negative statements
• If the participant responsible was hidden then which participant could be inferred from the surrounding context
• How often participants were shown to be doing actions, and how often actions were done to them
• The non-apology strategies present in the text

I won’t go into huge amounts of detail with the analysis, but there were pretty interesting findings (in my opinion!). In terms of transitivity:

1. Passive sentences (backgrounding responsibility) were more common in statements regarding positive events such as ‘improvements’, and responsibility seemed to be suggested to fall on Southern Health as an organisation.
2. When the responsible participant was removed, the responsibility could almost always be inferred from the surrounding context, and the participant suggested to be responsible was generally Southern Health as a whole in positive statements, but staff at the unit in negative ones. This seemed to create a divide between the ‘good’ organisation and the ‘bad’ staff.
3. Southern Health was most frequently shown to be doing things to something else, such as improvements, whereas staff were always positioned behind something else which backgrounded their involvement in actions.
4. Inanimate nouns such as ‘investigation’ were also often shown to be responsible for actions rather than explicitly naming who was driving these processes, further hiding personal responsibility.
5. Inanimate nouns often ‘helped’ Southern Health in positive events, but ‘revealed’ information to Southern Health in negative events. This frames Southern Health as being dependent on these inanimate nouns, and reduces their responsibility for actions.
6. Staff were often shown to be responsible for ‘failings’, whereas Southern Health was shown to be responsible for a greater variety of actions, again creating a divide between ‘good’ Southern Health and ‘bad’ staff.

The non-apology findings were:

1. 10/14 possible non-apology strategies were present in the texts, often with more than one example of each found.
2. The most common strategy was to use words like ‘incident’ to avoid explicitly stating what the apology was for.
3. The second most common strategy was to express a will to apologise or refer to a past apology.

I only looked at four texts so it’s not really possible to make sweeping statements about Southern Health based on these findings, but in these texts there is evidence suggesting some deliberate manipulation of Southern Health and its staff in assigning blame and taking credit for actions, as well as intentional avoidance of producing an actual apology and risking admitting responsibility for negative actions.

The division between ‘good’ Southern Health and ‘bad’ staff is interesting as it shows a lack of ‘duty of care to staff’, something that they emphasise throughout the communications. The findings also contradict the NHS Being Open policy that is designed to avoid shady communications, which suggests that this kind of communication isn’t widespread across the NHS and that Southern Health needs a reminder.

So, what now? As satisfying as it is to know that I managed to use my degree to give a giant middle finger to Katrina Percy et al, realistically I’m just an undergraduate with a long essay to wave at Southern Health. What would be ace is if someone who could use these findings for positive change (i.e. someone from Southern Health who reads this), actually had the balls to admit that their communications could do with a bit more openness.

Week 12: Sorry seems to be the hardest word #107days

This week, Week 12, we’re focusing on saying sorry. To kick us off a post from Sara sharing her thoughts and experience.

Saying sorry. A fairly straightforward concept with a handy NHS guide for those who might struggle. We’d planned a week on this topic as it’s fundamental to helping families deal with the unexpected and preventable death/serious harm of a family member. A swift, heartful and genuine apology probably is the most valuable tool the NHS has, in terms of heading off lengthy, painful and ultimately costly battles with families. Sadly, this doesn’t seem to be widely recognised.

This issue is particularly timely as the template response circulated by some Conservative MPs to constituents’ requests for support for the #LBBill includes a paragraph about Sloven and their unreserved apology for LB’s death. This is lifted from the statement by Katrina Percy, CEO of Sloven, on the day the independent review by Verita was published back in February 2014.

This apology was made seven months after LB died. Up to this point, I [not our family] received a ‘I was deeply saddened and sorry to hear of the death of your son, Connor’ from the Acting Chief Exec on July 11th 2013. An exemplar non apology. Her sadness comes first, followed by ‘sorry to hear’ and then a second line with ‘sincere condolences’ scattered like confetti. These words are words anyone can say to someone who has experienced bereavement. Not the words you say to someone who has died in your care.

Katrina Percy, the actual CEO, popped up in December 2013 ‘offering my personal and sincere condolences on the death of your son, Connor‘.

Again, a non-apology. Offering condolences is not saying sorry. We had to wait until there was evidence that LB shouldn’t have died before something approaching an apology was made, three months later. Sadly, despite this public statement, and an apparent acceptance of the Verita findings, nine months later Sloven stood in front of the coroner, arguing that LB died of natural causes. Maybe the NHS Being Open policy needs a footnote added to remind CEOs to remain consistent to their apologies.

In August 2014 we received a letter from Katrina Percy that is tooth enamel removing in its toxicity. On the subject of apologies, she has this to say:

Like every single organisation and individual in the world, we are not perfect and on a rare number of occasions we get things wrong, sometimes with deeply distressing consequences. On these rare occasions, my role as Leader is to do everything in mine and my organisation’s powerto offer our deep and sincere apologies, to work with everyone concerned – including relatives and regulators – in as positive and productive a way as possible to learn from what went wrong and to put in place arrangements to try to ensure nothing similar happens in future.

In this regard, I believe it was absolutely right for us to offer our profound and public apologies to you for the death in our care of your son, Connor.

Profound, sincere and deep are just words. Meaning remains absent, sadly. And without meaning you really ain’t sorry.

So this week we will be thinking about saying sorry and apologies. Please share any experiences in the comments section or drop us an email. As we say with tedious regularity, this really ain’t rocket science.

Week 11: #PMBBallot results are in…. #107days

As you’ll all have been aware the last two weeks, Weeks 10 and 11, have been given over to the #LBBill in the Justice Shed and in #107days. After truly sterling work by you all we’d managed to contact 338 MPs before the Private Members’ Bill ballot #PMBBallot was drawn.

The ballot saw 462 MPs names into the hat, and twenty drawn out. There was much excitement amongst JusticeforLB’ers as the first eight MPs drawn had all been contacted about the #LBBill, not bad for a campaign run entirely on love and creativity with absolutely zero resources. However the slots are drawn in reverse order and our luck turned a little, so the excitement was short lived.

In the end twelve out of the twenty names had been contacted to request their support for the #LBBill before the ballot, including three MPs in the top seven. So we still have hope.

1. Rob Marris, Labour MP, Wolverhampton South West

2. Chris Heaton-Harris, Conservative MP, Daventry

3. Sir Gerald Howarth, Conservative MP, Aldershot

4. Julie Cooper, Labour MP, Burnley

5. Wendy Morton, Conservative MP, Aldridge-Brownhills

6. Teresa Pearce, Labour MP, Erith & Thamesmead

7. Mike Wood, Conservative MP, Dudley South

What we now need is for JusticeforLB’ers to contact their friends, families, colleagues and long-lost lovers who live in the constituencies represented by the MPs with the top slots (listed above). MPs are expected to represent the priorities of their constituents, so we need to make sure constituents in these areas raise their concerns and request support for the #LBBill.

We shared a post yesterday that you can read here with some suggestions of what you could do if your MP won a golden ticket in the ballot, please share with friends and relatives in the areas above. If you have media contacts in those areas who would like to run a story on the #LBBill and its relevance to local disabled people then please out them in touch with us too on email. We would encourage supporters to try and raise support in those areas rather than contact the MPs direct (unless they are your own MP). This is only likely to irritate MPs if you are not their constituents.

If you live in one of the constituencies above, please do contact your MP and try to encourage them to support the #LBBill. There is stacks of information on this website and the dedicated LBBill blog here and the full draft, and all the iterations it has been through is also there.

If you’re need a little reminder of why it’s worth your while, check out this slideshare, that includes at least one constituent of the MPs listed above:

Week 11: What to do if your MP wins a golden ticket in the Private Members’ Bill ballot #107days

This blog post, on the eve of the Private Members’ Bill ballot #PMBBallot makes some suggestions of what to do if your MP wins the golden ticket in tomorrow’s ballot (and some of them might be useful even if they don’t).

Thanks to the unstinting efforts of #JusticeforLB’ers across the country, at the time of writing over half of all MPs (333 out of 650) have been contacted about #LBBill. This is a huge achievement in just over a week, and reflects the entirely crowdsourced nature of the Bill so far.

Our campaigning is far from over though and we need to redouble our efforts at 9am tomorrow, when the ballot for this year’s Private Members’ Bills takes place. The House of Commons twitter account has been highlighting the role of PMBs and using the #PMBBallot all week, so we’re hopeful that they may live tweet it and if you’re online you can watch it on Parliament TV here!

Did you know backbench #MPs can introduce Bills for debate in the Commons?http://t.co/6FpbWYzvSI #PMBballot pic.twitter.com/yaopmcMlP8

— UK House of Commons (@HouseofCommons) June 1, 2015

Shortly after 9am we will know the names of the MPs who will have the chance to present a Bill of their choice to Parliament. As explained in a previous blog on the LBBill site we need one of the top six or seven MPs to take #LBBill for it to have a real chance of becoming law.

Therefore we’re asking all of you to check Facebook or Twitter as soon as you can after the ballot tomorrow morning to see if your MP has drawn one of the ‘golden tickets’, that is to see if they came high up in the Private Members Bill ballot.

If they have, then these are some suggestions of things you might do to get your MP’s attention and persuade them to sponsor the #LBBill:

1) Tweet your MP. While this only takes a few seconds our experience so far is that not all MPs engage with their Twitter accounts (indeed some still aren’t on Twitter). So please do this, but don’t just do this! 140 characters is limiting but please try to get across why #LBBill matters.

2) Email your MP. We won’t win any prizes for originality with this suggestion but emails will go straight to the MP’s staff and experience is showing supporters are getting better engagement from emails than tweets. Explain to your MP why #LBBill matters to you.

3) Phone your MP. You can ring the House of Commons switchboard on 020 7219 3000 and ask to be put through to the office of your MP. Be sure to say you are their constituent, you are calling because you know they have been drawn high up in the Private Members Bill ballot and that you would like them to sponsor #LBBill. Explain why the Bill matters from your perspective. If you can’t reach your MP ask for their researcher.

4) Send your MP a letter. Despite being a little bit obsessed with the power of social media to engage with politics, we also love getting post and think your MP may too. Why not dig out your finest writing paper, or dig in to your stash of LBBus postcards and write to your MP. Be sure to do it quick so it reaches your MP before they decide on who to support. If you have children or artists you’re keen to engage, why not send your MP an LB Bus picture too and explain the significance.

5) Go to your MP’s next surgery. All MPs hold surgeries where their constituents can go and discuss local issues with them face to face. Check your MPs website, look in the local press and find out when their next surgery is to be held. Maybe try to get a group of people together to go and see them. If you are going as a group you might want to contact your MP’s constituency office (as opposed to their office in Parliament) and let them know in advance.

6) Go to see your MP in Parliament. If you contact your MP by email or by phone (see 2 and 3 above) you could ask for an appointment to go and see them in Parliament – and perhaps take friends / a local group with you. If you meet in Westminster you may also be able to get a tour round Parliament!

7) Invite your MP to come and meet you. You might like to invite your MP to come and meet you and your family at home, or to come and speak to a local group your involved in. MPs generally want to engage in their local community and it will help convince them of the need for action if they get an insight into people’s real lives.

8) Hold a #JusticeforLB pop-up picnic or party and invite your MP along. The idea for pop-up parties was first shared back in April (see Action 3 in this post) and we’re keen to ensure everyone, regardless of any disability they may have, gets the chance to attend. This is a great chance for a number of people to get together, have fun and meet your MP in an informal setting.

Even if your MP is not a lucky golden ticket holder, their support for the Bill could be key. The more MPs that are aware of the challenges facing disabled people, the origins of the Bill and how it could improve disabled peoples live, the better. The one key element of any action at this stage, is speed.

MPs will be starting to commit to particular causes in the hours and days after the ballot. So please do contact your MP as soon as possible, even if just by a quick tweet, email, letter or call. You can always follow up with something more creative.

Some resources that might help you are:
– The quick guide to the Bill
– The full text of the Bill
– Explanatory notes, which deal with the technical issues
– A film which explains where the Bill came from and what it would do
– A blog from Sara explaining why the Bill would have made a difference to LB
– A blog from Steve explaining why the Bill is needed in the light of the Care Act 2014

You can include links to some or all of these when you contact your MP, but they will definitely need to have the full text of the Bill to hand. You can download it by clicking here: LBBill Draft 2

If your MP has any questions, they can send us an email to LBBillFeedback@gmail.com or tweet us @JusticeforLB and we will arrange for someone from the LBBill Team to call them.

Don’t forget if your MP isn’t chosen at the top of the ballot (a highly likely event) that you can still email or tweet them asking them to contact their colleagues who have been successful in the ballot and support the Bill. Peer pressure is very important!

Finally, there will be thirteen MPs who are picked at 8-20 in the ballot who will get the chance to sponsor a Bill but without any realistic prospect of it having enough Parliamentary time to become law! If we cannot persuade any of the top seven MPs to sponsor the Bill we would be delighted for it to be picked up by any of these MPs as a chance to keep the pressure up. So if your MP is picked in a lower slot please still contact them.

Thanks for your support so far, and for all the work that will follow Thursday’s ballot. Some of you potentially hold the keys to the next stage of making the #LBBill law and are about to have a very important role to play in the campaign! As ever, we could not do this without you, so thank you.