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.

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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 8th 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 8th 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.

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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 24th June.

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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?’

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  • 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.

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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.

Chalk CharlatansGroup

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 24th, 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 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.

Eddie S talk patch

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 10: 1 in 4 MPs contacted re #LBBill, still 75% to go #107days

Wow, what a weekend of #bankholidayactivism. Ever since the #JusticeforLB campaign evolved/emerged/was born (still not sure which of these is most true) we’ve been blown away by the responsiveness of people. This weekend proved no exception and we’re delighted to now share that slightly over 25% of all MPs in Westminster have been contacted about the #LBBill.

Seriously, that’s 1 in 4 who will know about LB, who will hear about his entirely preventable death, and who hopefully will read up on the #LBBill and lend their support to it. The responses from MPs on twitter and email has been overwhelmingly positive, where they’ve had a chance to engage, and let’s be honest MPs are allowed time off too and given it was a bank holiday and the start of half term for most people, we really didn’t expect to have had pretty much any response.

LBBillContacted_25%MPs

We’re not getting complacent though. As wonderful as it is to see that all MPs in Norfolk and Devon have heard about the #LBBill there are still whole swathes of white on our map where people don’t yet know.

So this is a quick thank you, a mini celebration and a call for further action.

If you are reading this, and you care about disabled people, please take action to contact your own MP and let others know about the Bill and what it proposes. You can read Sara’s post from yesterday for more on what difference the LBBill would have made to LB – short answer is he would probably still be alive today, playing with his footy guys and chatting away to Chunky Stan.

Screenshot 2014-04-23 05.56.04

We need to make sure no other family suffer the same loss that LB’s have, that no more disabled people are denied what are essentially very basic human rights. So please take action, we need to give the #LBBill every chance to be heard in Parliament.

Thank you all.

Maintaining momentum after #107days

A month now already since the ‘end’ of #107days and we’re delighted that the momentum continues. With little/no effort from those of us in the #107days shed (which is lucky as the shed has been largely empty for the past four weeks). So here’s a taste of some of the post #107days actions… in no particular order:

Chrissie Rogers (and Eamonn) ran the British 10k London Run in LB’s name with remarkable cheer and good humour. Wonderful to see the photos.
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Continuing on a running note, Natasha @notsurejustyet is celebrating her 40th birthday shortly and has decided to mark it by running a 10k race to fundraise for LB’s Fighting Fund and SNAAP.

In another one of those remarkable coincidences or happenings that have sprinkled magic dust over this campaign, we received the following message and photo on our facebook page:
DH
We are very grateful to all these healthy fundraisers.

Away from the exercise track, My Life My Choice held their monthly Sting Ray night club evening in LB’s memory with a raffle and ticket sales for the fund and LB’s favourite songs on the playlist. It was a brilliant evening with punters from across Oxford dancing their socks off all night. Amy Simmons wrote a wonderful and moving song titled Laughing Boy:

How could the world keep spinning?

Why does this house no longer feel like home?

Who are you to judge the value of his life, claim the cost is far too high?

Deciding who should live or die?

I no longer feel like smiling,

I’m surrounded by friends, but still I feel alone.

His life was never yours to take! My heart was never yours to break!

The choice was never yours to make!

I will not lay down my sword, for the world can ill afford,

To grow war weary, tired or bored, I cannot go back on my word.

For the battle must rage on, until the battle has been won,

Until justice has been done, for a life that’s been and gone…

Nothing lasts forever,

But eighteen years is hardly time at all.

I fight because I have to, there’s no happy ever after,

My world no longer filled with laughter.

My world no longer filled with joy…

Laugh on, laughing boy.

In other fundraising news, Pru has created chocolate buses for sale at her online chocolate shop and is selling them for £1.07 plus P&P, with proceeds to the fund.
Screenshot 2014-08-09 13.15.20
Other edible fundraisers included a cake sale by Rosa, Ruby and friends:

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…..before the flag was washed and Dan Goodley and Katherine Runswick-Cole continued the global march of the LB flag.

VictoriaUni

As Katherine emailed ‘Just to say that the response to #JusticeforLB was amazing in Melbourne and Singapore and it was so exciting for us to watch the #LBBill emerging on twitter while we’ve been away’.
Screenshot 2014-08-09 13.35.36

Over the last month, awareness raising has also continued at a pace. Chris and Becky were tweeting from the IASSID Conference in Vienna and Max presented on #JusticeforLB at the #PDXGathering in Portland.

Closer to home #JusticeforLB was introduced to the JSWEC audience by a number of supporters including Hannah, Liz and Jo.
LizIthpres
Jackie also worked her magic on the Social Care Curry punters and arranged a donation for #JusticeforLB.

Sue Bott, of Disability Rights UK also raised the experience of LB through our amazing animation, with those at their Independent Living conference #ILVision

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LB made it into Hansard, a significant and heart breaking milestone:
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In other news, we are submitting a chapter about #107days and #JusticeforLB to a new edited book about social media and disability published by Ashgate. Animated and committed discussions are happening around the development of a Private Members Bill (currently ‘nicknamed’ the ‘LBBill’) to ensure that people have the right to live in their own home (an idea extraordinary with its simplicity). A facebook group has been set up to capture early discussions around this.

Finally, the Justice Quilt is being finished by the magical team of stitchers led by Janet Read and rumours are, it will be launched at the forthcoming Disability Studies Conference (9-11th September at Lancaster University) before being displayed at three other UK destinations across the next 12 months, yet to be decided.

So, as you can see any hopes of #JusticeforLB becoming quieter or less visible post #107days are entirely unfounded. Thank you all for your continued support.

Day 105: Textile art, provider challenge and a headshave #107days

Day 105 forms our hat-trick of three way adoptions for the week, it is shared by Briony, Mark and myself, George.

First up is Briony, who had this to say about supporting #JusticeforLB:

I wanted to be a part of #107days and the #JusticeforLB campaign after reading Sara’s blog. It was heartbreaking to read and difficult to walk away from. It also hit me hard because my youngest daughter has autism and at nine years old I am aware of the realities of trying to access the support that she needs. It almost always becomes another battle with the system. You get tough, your priorities change and the little things don’t matter anymore. In fact, she is probably the reason that I am finally doing what I’ve always wanted to do.

Briony made the most beautiful wall hanging for #107days, read on for more:

Day105Stitching

The textile piece that I have made for #107days is centred around a quote from one of Connor’s favourite songs, ‘National Express’ by Divine Comedy and includes a London bus representing his love of buses and the Twitter bird representing the positive impact that social media has had in gaining support for the campaign. I chose this particular quote from the song because I felt it best captured the spirit of #107days and the positive actions people have taken to try and secure a better future whilst fighting for justice for LB.

Day105

As it developed into quite a big piece I realised that I could do more than just share photographs of it through social media. I contacted Louise who runs a creative social enterprise called Scrap in Sunnybank Mills, Leeds and she was happy to display it for me in their cafe during 107 days next to Connor’s story. Many different people pass through Scrap so it seemed like the ideal place to reach a new audience and spread awareness of Connor’s story and the campaign.

Whilst making it my youngest came up to me and said, “You’re always making LB stuff!” I started to prepare for what was coming next thinking, Oh here we go! Just because it’s not about you! But then she went on to say, “You should start an LB sewing support group and make buses and signs with his name on…and cushions.”

This insight, together with her unique sense of justice (be it in the form of Dog the Bounty Hunter!) leads me to think that she could definitely teach Southern Health a thing or two.

Next up today is Mark Lever, the Chief Executive of the National Autistic Society (NAS). Mark wanted to adopt a day to write something to challenge himself, and other social care providers. Here’s what he had to say:

Social care providers and the regulators are coming under the spotlight more than ever – and why shouldn’t they?

When a family makes the decision to place someone they love in the care of a ‘third party’ they are vesting more trust in that decision than any other. Local authorities making a placement are rightly concerned that they are spending significant public money on a good service. Everyone has an interest in ensuring the person being supported is well cared for and achieves the best outcomes possible.

If we’re all striving for the best outcomes, why is there not a more open discussion of the lessons learnt when things go wrong?

I am not talking here about the systemic institutionalised failures we witnessed at Winterbourne View. Rather, the incidents that occur even within services run by respected and reputable organisations working to do the best they possibly can for the people they support. As someone running one of those organisations, I can confirm that, of course, they do happen.

Working in social care is very challenging – and simply isn’t the right job for everyone. The people who choose to make it a career are dedicated and passionate about their work. They are certainly not doing it for the money where, for many, the pay is barely more than the minimum wage. To do the job well, they need an incredibly strong temperament and values base.

My concern is that, as services come under increasing pressure, including financial pressure, people being supported risk being seen as commodities and ‘good’ support can mean ticking the right boxes. The values base is in danger of being lost and forgotten as organisations strive to be seen to be doing the right thing and maintain contracts.

As more pressure is placed on providers, we should feel confident that we can share our occasional failures openly so that we, and other providers, can learn and constantly improve.

Instead, we’re currently too often on the defensive. This can lead to us being the opposite of open and get in the way of making changes for the better. We’re necessarily and properly held to account, given we care for often very vulnerable people at public expense. We also have to acknowledge that we’re in a competitive environment, where one organisation’s failure may be another’s opportunity. But this should not lead to a blaming culture, shut in on itself.

I’m not arguing for a ‘stuff happens’ attitude. Rather, greater openness and honesty should reinforce the values base and build on a wider commitment to challenge all service failures with energy and rigour. We owe this to parents, carers and the people we support if we are to live up to the trust they have placed in us.

Here’s what Mark has pledged to do, in addition to offering this blog post:

My commitment to action to support the #107days campaign is to convene a roundtable of 8 to 10 service providers to explore how we as a sector can share more openly the lessons learned from failures in service delivery. The aim will be to learn more and, as a consequence, to support and inform the work to reduce the risk of similar events occurring again.

Finally today, it’s over to me, George. Here’s why I wanted to support #JusticeforLB and #107days:

I’d like to suggest that I considered my involvement in #JusticeforLB, that it was something I deliberated about and mused over, that I was reconnecting with my early career in Special Ed, that I was giving something back, but the reality was it was nothing of the sort. I’m supporting #JusticeforLB because I couldn’t live with myself if I didn’t, it wasn’t so much a choice, as a compulsion. I was one of Sara’s many legions of fans who regularly read her blog about life, and I felt sick to the pit of my stomach on July 4th last year when I read this.

It was 361 days since my grandfather had died, and 231 since my Dad had died and I felt like I’d had enough death to last a while. But for LB to die, this wasn’t right, he was a fit young man, spending time in a specialist unit, with experts, to help make some life choices and changes. He couldn’t die. For the last year I’ve oscillated between disbelief and anger, and my internal pendulum has yet to stop swinging and come to rest. What Sara, Rich and family have had to face, is like the yin to our family’s yang. We had the knowledge that Dad was terminally ill, and the truly amazing support of our local hospice’s Hospice at Home service, that allowed him to die a peaceful and dignified death; LB was fit and well, his death was preventable, and those responsible have done their best to shirk all responsibility ever since. If you wanted to compare and contrast a bad death experience, and a good death experience, Sara and I would be a good place to start.

In February, before the independent report into Connor’s death was published, I was appalled to read Sara’s account of how they were being treated by Southern Health. I ended a blog post ‘They [LB’s family and friends] need to be able to grieve and let go of the pain, not be constantly poked and prodded and let down. Someone please make it stop. Now’.

A month later, nothing had improved. Worse still I’d been a key instigator in creating a social media storm around the publication of the Verita report, and I suddenly felt like if we couldn’t make progress and turn this into something good, then I’d have just added to Sara and Rich’s angst and pain. Rather than waiting for someone else to step forward to make it stop, I felt compelled to act, to climb into Sara’s virtual cave, and share her pain. This was only sealed for me when I had the chance to meet Sara and Rich for the first time in March.

As for #107days, if no-one with a remit to sort this stuff out was going to make things easier for LB’s family (and to be fair CQC were making efforts early on, but social care and providers were deafeningly silent), then I’d do my best to connect with Sara and try to make some sort of sense out of this madness. Even before the Minister publicly stated that the Winterbourne JIP (established to improve learning disability provision after Winterbourne View) was an ‘abject failure’, there was a growing consensus of such. So what could we do? We could try to improve things, get stuck in and do what those paid to do it evidently didn’t (don’t) consider their remit…so #107days was born. It emerged out of a desire to mark and witness LB’s life and death, to improve things for other dudes, to raise awareness and get people talking and sharing and collectively responding, and most importantly acting.

So what am I doing?

I’m shaving my head!

To raise awareness and funds for the local hospice, Rowcroft, that supported our family, and for #JusticeforLB. You can see more of what I’ll be losing in the video that follows:

So far I’ve raised £5,270 but I’d love to raise a little more, so please do donate if you can afford to. You can pledge any amount, and if your organisation would like to know more about how to use social media campaigning you can even pledge for a half day workshop with Sara and myself. Plug over.

I just wanted to finish by saying what a truly inspiring campaign #107days is. Each and every person who has adopted a day, or pledged an action, or shared their experience, has made it what it is. It has been an absolute honour to be involved and I’m left in awe at what you can achieve when you set your mind to it and don’t worry about who gets the credit, or the blame. I feel confident that the power of our collective, will continue to improve things for all dudes, in LB’s name. Thank you all for your support with that.

Day 80: Busking for Justice #107days

Day 80 was adopted by John, variously known as Busker John or Kid Rage! John’s piece is one of two this weekend that offer a personal perspective from people who knew LB, and the lasting impact he has had on them. Here’s what John had to say:

So many of the contributors to 107 Days are so experienced and knowledgeable about learning disabilities and autism. I would like to add something about ignorance. I met Connor in 2007 and was, like most young people who didn’t know anyone like Connor, pretty ignorant about his experience or other young dudes like him. I learnt a lot within five minutes of meeting him; he liked asking questions, he had a sharp sense of humour and knew where my nearest coach company was. I didn’t know how to speak with Connor, (as if there was a way to do so that was different to anyone else). I was not wilfully ignorant, but had considered very little about people with learning disabilities due to having so little to go on. There’s very little air-time for people like Connor or their relatives. When there is, it’s usually about something terrible happening.

Due to a change in jobs two years ago I’ve learnt a fair bit about services for people with learning disabilities. I’ve learnt a lot from reading Sara’s blogging, and more recently other people’s. Among other things, the Justice for LB campaign sheds light on a health and social care system that revolves around the rhetoric of person centred care. From all these contributions and what I have seen myself, the system is not always good at hearing and more importantly considering the voices of people who are very vulnerable, or those who know and love them. I’ve seen how this allows ignorance to exist where people who are ‘voiceless’ need empathy and understanding in order to make sure they are looked after, safe and feel safe. If a dent is made in that ignorance due to 107 days then that’s one success.

I am proud to say I did know and learn from Connor…. we made each other laugh on a few occasions. The last time I saw Connor he had some more questions for me and we’d just had a big breakfast in Headington. A good last memory!

Day80_Busker John

Last week I busked for a while in Oxford.

[youtube http://youtu.be/HJwFI-EFZ6o]

I played some songs which Connor and his family like and which remind us of him. Apparently I looked a bit angry and gained the stage name ‘Kid Rage’ in time for the gig with The Amazing Geoffrey at Connor’s party on 31 May.

Day80_Party performance

One song I played always makes me think of what Connor’s reaction would have been to a red route-master pulling up outside his house on a hot July day last year. The song is about a young man who stole a car and “drove it like our days had been stolen.”* I think Connor would have wanted to take that bus and ride a long way with his family with no thoughts of the future or consequence.

The lyric that John references above is from ‘Headlong into the Abyss’ by Billy McCarthy, more on that tomorrow….

Day 77: Six degrees of separation #107days

Day 77 was adopted by Liz who has offered her thoughts on six degrees of separation, and how we can use it to support #107days and #JusticeforLB:

I started reading Sara’s blog after meeting her on Twitter through following somebody else who knew her. That is how Twitter works – we follow folk who follow other people we know and who we realise we have something in common with.

Sara was someone I wanted to know because I was doing PhD research around aspects of why the special needs domain is so problematic and I read some of her published work that resonated with me. In particular, she helped me with a minor dilemma when my PhD supervisor told me not to use the word ‘meltdown’ and Sara was able to point me to article she had written with ‘meltdown’ in the title.

As I read Sara’s blog, like many others, I was amused, challenged and inspired by her accounts of life with LB. When life got tricky, I was reminded of the struggles we had experienced with my son when we engaged in arm-wrestling with the authorities to get him the support he needed. My son was fortunate; he got a place in a specialist residential school where he was enabled to develop academically and personally. He is now living independently and studying for a foundation degree. But things could have been so very different when he was out of school and threatening to kill himself…

For LB and for Sara and her family things worked out differently. LB was a much loved young man who did not receive the care he was entitled to from those paid to care.

Last year, 4th of June marked the day of my PhD viva. It seemed appropriate to adopt the anniversary of that day as my contribution to #107days because if I hadn’t embarked on that postgraduate journey, I would perhaps never have met Sara and never heard of LB.

But on the other hand, I might have done. Some years ago somebody came up with the idea that if you take any two people on the earth, they are no more than six acquaintances apart – there is more about it on Wikipedia.

Day77Six_degrees_of_separation

By Laurens van Lieshout (User:LaurensvanLieshout) (Own work) [GFDL (http://www.gnu.org/copyleft/fdl.html) or CC-BY-SA-3.0 (http://creativecommons.org/licenses/by-sa/3.0/)%5D via Wikimedia Commons

When I started to think about how to use today, I started thinking about who I knew that might not have heard about LB. What would happen if I told them LB’s story and asked them to pass it on to others? I started thinking about people I was no longer actively involved with, but I had known in the past and wrote a few letters – and I got some replies, including a couple from Bishops and one from a member of the House of Lords, each promising to speak to others.

So the challenge today to me – and to anybody reading this – is to go through our address books and identify people who we have spoken to about LB. They may be work colleagues (past and present), people we socialise with, former partners, whoever… Once we have a list of names, send an email, an LB postcard, a letter, a text – whatever is appropriate for that person – and tell them about LB, a much-loved young man who died a preventable death because those paid to care didn’t care. Then tell them about other folk, young and not so young, who suffer unnecessarily and about parents who worry about what will happen to their children if they are no longer able to care for them. Most importantly, tell them we can make a difference if we spread the word and demand change. Ask them to tell their friends, colleagues, neighbours and folk they meet in the pub or on the bus about LB and ask them to tell others too.

If we all tell somebody today about LB, we can get lots more people making a noise and demanding more caring and responsible support systems so that more young men like Connor Sparrowhawk don’t die. Let’s make sure Connor didn’t die for nothing! 

Over to you now. Get talking, emailing, sharing….