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.

Day 92: Inclusion East and the Missing Sock Bus #107days

Day 92 was adopted by Inclusion East. Here’s what they did, and are doing, for #JusticeforLB and #107days:

The members of Inclusion East are a small,committed bunch of people with complex needs, their families and good friends. In June our monthly Directors meeting was devoted to thinking and talking about Justice for LB.

We were keen to be up to date with what is happening with the campaign. Who is doing and saying what but more importantly

a) What were we doing to add our voices to the outrage, sadness, injustice that led to the very need for LB’s campaign?

All this is very keenly felt as we are families of people who live with autism, epilepsy and complex health and communication needs.

b) What were we doing practically to speak up, challenge ,include people and prevent future disaster?

We took stock and made our list which included:

• Active Tweeting
• Mentioning Justice For LB at all meetings, conferences and consultations. Long List!
• Particularly raising awareness of good epilepsy support at conferences and workshops and yes, on twitter.

Then we adjourned to The Missing Sock which is a funky, Inclusive hostelry in Cambridge. It was there that we plastered The Big Red Party Bus with our home made #JusticeforLB posters.

Deep thoughts and a lot of laughs for Laughing Boy.

Day 75: Pockets of peace #107days

Today was adopted by Louise, a friend and colleague of Sara’s. This is why she wanted to support #107days and #JusticeforLB and what she is doing:

I adopted today to take Sara out to do something nice – nothing about the campaign, nothing about work (we are colleagues) – but just a bit of a treat.

Any of you who read Sara’s blog will know what a toll this has taken on her, and how in the midst of coping with personal grief she has been thrust into a role as a highly effective but reluctant campaigner. She deserves a break.

Sara and I used to chat a lot about parenthood and our kids as they moved towards adulthood. Sara’s daughter and my older son did their A levels at the same time, so we compared notes over exams, university choices, student loans – and about how on earth we’d feel when they left home. How could our babies possibly be old enough all of a sudden to make all their own choices and be responsible for running their lives? What changed so dramatically overnight on their 18^th birthday to make us redundant? I remember talking about the way the term ‘helicopter parent’ is used to ridicule parents who can’t let go, and agreeing that maybe it was all a bit more complicated than that.

Of course we cried when our firstborns left – and of course over time we discovered it wasn’t quite such a separation as we feared. They ring up for advice, they come home for holidays and leave their laundry lying around, they ask for money; we ask them about their new lives (and sometimes they tell us), we remind them about stuff, we still ask them to do the washing up. It’s not a sharp divide between dependence and independence at 18, but a gradual handing over of freedom and responsibility over many years, all the while providing the safe backstop of parental love, interest and concern.

And then we got to talking about the next two kids approaching the cliff-edge of 18 – LB and my younger son. The same age, but with such different prospects. While my son followed his big brother to university, Sara has blogged about the lack of an ‘imagined future’ for LB. Long before he was admitted to The Unit, she was anxious about the absence of meaningful opportunities for him when he left school, but determined she would find something. Then came The Unit, and the stripping away of all aspiration, meaningful activity, and responsibility to do something productive. Replaced with vacuous ‘choices’ to do nothing and a cruel version of ‘autonomy’ in which Sara – who had loved and looked after him with inadequate support for 18 years – was cut out of decision-making. Worse, she was labelled as a pathological ‘helicopter parent’, part of the problem preventing LB from being an independent adult.

Of course we have to preserve individual rights for people with disabilities, of course we do. And the relationship between young people and their parents is often complex and sometimes damaging. But here’s the irony. While my sons and LB’s big sister were feeling their way gradually towards adulthood with family support along safe, well-trodden roads, LB – the one with less mental capacity and adult competence – was bundled sharply into it with no map and no guide. It feels, to paraphrase Thatcher, as if care services believe ‘there’s no such thing as family’. To exclude all parents as a matter of routine is surely wasteful of all the care and understanding they can bring, as well as tough for us parents.

So today is a day to think about Sara and all the rest of the family, and reflect on their needs and what this has done to them. We can’t make it right again, but we can try to create little pockets of peace and relaxation to lessen the pain for a short while.