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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.

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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.

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Week 10: Why the #LBBill is more than the Care Act #107days

Today’s guest blog post is from Steve Broach, a key protagonist in the #LBBill. Here he reflects on why we need the Bill.

It is such a thrill to see the map of the UK turning green as Justice for LB supporters contact their MPs to ask them to support #LBBill, the proposed new law to reinforce disabled people’s right to live in the community with choices equal to others.

Getting the Bill to this stage has involved the collective wisdom of a huge number of passionate and committed people. We have had input on the content of the Bill from disabled people’s organisations, individual disabled people, families, carers, friends and allies. The text of the second draft of the Bill is much improved from its first draft, with a stronger rights focus including implementation of the right to independent living in Article 19 of the UN Disability Convention.

There are some ideas in the bill that can be traced back to one individual, like Mark Neary’s original idea that all placements made by the state should be subject to approval, which is reflected in Clause 5. Others have emerged from the free-flowing discussion, debate and dialogue that has characterised the process so far.

We had hoped to have more time to debate Draft 2, it’s my fault we don’t, because I’d thought the ballot for private members’ bills was in July, whereas in fact it is on 4 June. This is the kind of mistake that would get a professional campaigner fired, but as we are all volunteers and no-one’s in charge I’ll probably get away with it. Apologies nonetheless.

So the key action now is to get as many MPs as possible informed about and supportive of the Bill, so that when we know the outcome of the ballot we have the best chance of getting a high-ranking MP to sponsor the Bill (see the #LBBill process post for a more detailed explanation of this).

One of the question supporters are likely to be asked by MPs and their staff is what difference would #LBBill make, and in particular, wasn’t this all dealt with last year in the Care Act 2014? The short answer to these questions is, a huge difference, and no. A more compelling answer to the difference question has been given by Sara Ryan in an amazing post as part of this Week 10 of #107days.

So I’ll take the lawyer’s question, which is why the Care Act isn’t enough.

I’ll be the first to agree that the Care Act is a step forward. The well-being duty in Section 1 has the potential to transform the approach to how social care is provided to disabled people. However, the Care Act is an act about social care, it says nothing about the NHS services that many disabled people need. It also falls far short of implementing a right to independent living.

In particular the Care Act doesn’t do any of these things which #LBBill would do:

  1. Require the state to ensure that all disabled people can live in their community, with choices equal to others and the support necessary to ensure their full inclusion and participation in the community (Clause 1)
  2. Expressly reject any idea of capping expenditure on care at home at the level of the cost of residential care (Clause 2). This is likely already to be unlawful but it is known that this practice goes on and it should be outlawed.
  3. Require the state to secure in every area a sufficient supply of community support, and to make sure disabled people are employed to plan and commission these services (Clause 3)
  4. Ensure that the most appropriate living arrangement is made for every disabled person who needs state help, which will generally be the arrangement they choose (Clause 4)
  5. Require appropriate approval of all living arrangements made by the state (Clause 5)
  6. Require reporting on all living arrangements made by the state, to create the disinfecting effect of sunlight which is so badly lacking at present (Clause 6)
  7. Make the Mental Capacity Act 2005 more respectful of the rights of disabled people and their carers, as a prelude to proper systemic reform of the MCA (Clause 7)
  8. Take people with learning disabilities and autism out of the scope of the civil sections of the Mental Health Act 1983 (Clause 8)
  9. Ensure the provision of appropriate community mental health services to people with autism and learning disabilities (Clause 9)
  10. Abolish the use of secret ‘panels’ and require disabled people and those around them to be properly involved in all decisions made about them (Clause 10)

So, none of #LBBill duplicates anything that is in the Care Act, or other existing legislation. It’s all new and it’s all what the community of #JusticeforLB supporters has said is needed if the law is to properly reflect and respect disabled people’s human rights.

With the government expected to announce today its intention to repeal the Human Rights Act and replace it with a British Bill of Rights, let’s get our politicians thinking about the rights disabled people and their families have said they want and need to be enshrined in law. Please keep pushing so that every MP knows about #LBBill and knows how much it matters in advance of the ballot.

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With thanks to Caron Stuart-Cole of Graphics on the GO for this brilliant image.

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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.

LBChunkyStan

Week 10: LB and the #LBBill #107days

Yesterday’s post has got us off to a fantastic start with telling MPs about the #LBBill, so thanks to all of you for your help with that. Today we’ve a post from Sara reflecting on LB and the #LBBill.

A while back I was asked by a journalist (could have been on BBC Radio but I can’t remember now) if the #LBBill would have made a difference to what happened to LB. I am really not a natural or keen radio or TV interviewee, particularly when it’s to talk about something so horrific, and this question struck me as simply too sad. I fluffed it.

Now it’s time for action with the Bill, it probably is helpful to think through how the proposed changes to the law could have made a difference. [Howl.] First of all, LB should never have been admitted to the unit. If a range of meaningful ‘in-home and community support services’ were available [Clause 1] I don’t think LB would have become so anxious and depressed in the first place. He loved learning to be a mechanic at TRAX. He worked there the day before he died. If there were more opportunities like that and support available to help people access the stuff they want to do (i.e., the stuff that other people just get to do), I’m not sure LB would have got so down. Oxfordshire County Council (OCC) funded support included a 5 day holiday akin to a boot camp with learning outcomes attached to every waking moment that LB hated, and a peer buddy scheme which failed to attract young people and so LB was buddied by someone our age. Simply not good enough.

Once we reached crisis point, Clause 3 would also have prevented LB’s admittance. There was no crisis care. Just a number to call and be told to go to the out of hours GP. The modus operandi, certainly in Oxon but I suspect pretty much everywhere else, is to rely on families to do the graft and when things have escalated way beyond what most people could endure or ever dream of enduring, it’s off to the ATU. Instead of chucking more direct payments (as meaningless as trying to spend drachma in the local pub) and talk of ‘respite at a building with a snooker table’ at families in crisis, the local authority should make sure a suitably trained, experienced, enthusiastic and caring team are on call and available to work with people and their families to try to avoid the need for admittance.

Slightly ironically (and I still don’t really understand this), the commissioners were apparently happy to indefinitely pay £3500 a week for substandard care at STATT. LB had no desire to live anywhere other than home at that point so Clause 2 was less relevant to us.

Clause 4, which is about securing the most appropriate living arrangement, would also have offered LB some protection against what happened. A review of the new ‘living arrangement’ (which we thought was a short term fix) 3 months from the day it commenced would have happened around June 19th. As it was, nothing was done about getting LB out of the unit other than a meeting eventually organised for July 8th (with the pushing of LB’s head teacher despite OCCs grandiose claims to the contrary).

Clause 5 was also less relevant to LB again because he was still at school and should have been living at home. Like most kids do. This clause is very important to those people who are living independently however. Most people have a choice about where they live. It’s astounding really that we’re trying to change the law to protect people from being moved against their wishes.

One of the things #JusticeforLB has achieved is shining a spotlight on the murkiest of practices that continue in health and social care. I was chatting to someone the other day who said they read our posts with a mix of incredulity and horror. That light shining is embedded within the LBBill, particularly in Clause 6 which places a duty on local authorities and the NHS to report annually on all their living arrangement activities (with full disclosure on the when, why and hows involved), and the Secretary of State to summarise these in an annual report. This is bloody brilliant really and I hope, if the Bill becomes law, there is clear and careful scrutiny of this data at both a local and national level. Using lenses with aspiration, imagination and happiness etched in gold around the frames.

Clause 7 involves sensible rewording of the Mental Capacity Act and Clause 8, again sensibly, removes learning disability/autism from the Mental Health Act. Er, because neither are mental health issues. Clause 9 makes sure that despite Clause 8, people can still access mental health services. [I know].

I also love Clause 10 [I love it all really but some bits are stand out stars for me] which is about being open and transparent with the person whose ‘care’ or support this is about. A chewy bit of ‘nothing about us without us’ which is so blinking obvious. Invite people to meetings about them, give them free support to attend, let them respond in whatever form they choose and communicate the decision from the meetings in an accessible form. Bam. As simple as. And shameful it doesn’t already happen often.

LB was only invited to the last 10 minutes of the Care Plan Approach meeting during his 107 days in the unit. He wasn’t told about the weekly meetings or informed of what was said. Despite all the nonsense about making us get his permission to visit him daily, not one member of staff communicated anything meaningful to him about why he was in there. But that was because they didn’t know why he was there and no one bothered to put the support in place to enable him to come home. A situation that would not be possible (or certainly should not be possible) if the law is changed in the way we are proposing.

The Bill finishes with a bit of welly wielding stating how the Bill will be enacted [Clause 11] because there ain’t no point in changing the law if the law ain’t followed. So that’s it. A more coherent answer to the journalist.

And the short version:

“Yes. LB would probably be lying on the floor right now, playing with his footy guys and chattering away to Chunky Stan.”

Please support the #LBBillLBChunkyStan

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Week 10: Tell your MP about #LBBill #107days

The #LBBill is an idea to change the law for disabled people so that they have more control over what happens in their lives. We need your help to achieve that.

So Week 10 of #107days is an action week and we’ve dedicated it to promoting the #LBBill to all the MPs (new and old) now in Westminster. For those of you who aren’t familiar with the #LBBill you can visit the Bill website here and read the full draft Bill here. As with everything #JusticeforLB it has been developed organically and collaboratively, gathering feedback from far and wide including hundreds of disabled people, family members and allies. You can watch a short film (6 mins) about the #LBBill, where it came from and why it’s important here:

We need to contact as many MPs as possible to make them aware of the #LBBill and ask for their support in the Private Member’s Ballot. You can write to your MP via the WriteToThem website (it’ll even tell you who your MP is if you’re not sure); you could also tweet your MP and ask them to pledge their support to the Bill. If you’re unsure of what to say, you could include any of the following:

Please tell your MP that you support the #JusticeforLB campign and that you’re asking them to support a Private Members Bill drafted by the campaign. Please also explain that supporters of the campaign have come together to draft a Bill which would promote and protect disabled people’s right to live in the community with choices equal to others and the support they need. It has become known as ‘LB Bill’ in memory of Connor Sparrowhawk (who was known as LB or Laughing Boy).

Your MP might like to know that the Bill is on its second draft and has had feedback from hundreds of disabled people, family members and allies. The Bill has mass support, as you can see on the campaign website https://lbbill.wordpress.com/supporters. It builds on existing legislation, including the Care Act 2014.

Sign off encouraging your MP to support this Bill and why not ask them to encourage their colleagues to do so. Also encourage them, if they are eligible for and successful in the Private Members Bill ballot, to sponsor the Bill. It would help us if you asked them to reply to let you know whether they support the Bill. It takes two minutes to pledge their support and they can do so here: http://eepurl.com/73mXX

Please add a comment to this post with your MP’s name (and their party and your constituency if you know it) once you’ve contacted them directly, this will help us keep track on how many MPs know about the Bill. If your MP replies and has any specific questions or wishes to discuss the #LBBill then they can email us at LBBillFeedback@gmail.com We look forward to the pledges of support flooding in.

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LBBill criteria

Week 7: Ta da….Draft 2 of the #LBBill #107days

Yesterday we shared a post from Mark Neary on the eve of Draft 2 of the #LBBill. Today, on the eve of the 2015 General Election, we unveiled Draft 2 over on the LBBill website. Here, Steve Broach, introduces the changes from the first draft:

It’s been a while coming, but we hope Draft 2 of the #LBBill is worth the wait.

As previously blogged, we have had tonnes of feedback on Draft One of the Bill, by email, on social media and in a number of brilliant face to face meetings and events. We were pleased to see that although lots of people wanted the Bill to go further and do more, there was little if any disagreement at the idea of a new law to protect the rights of disabled people to live in their communities where they choose.

These were the criteria we used to decide what changes we made to Draft 2:

LBBill criteria

A key theme of the second draft is a stronger focus on enforceable rights rather than general duties. This is most obvious in Clause 1, which now would give disabled people a right to choose where they live unless the Mental Capacity Act or Mental Health Act is used to force a different outcome. We have also made the right on the state to take account of cost and its resources in Clause 4 subject to this duty. This all gives a much stronger focus on the rights contained in Article 19 of the UN Convention on the Rights of Persons with Disabilities.

Another major change is in Clause 8 in relation to the Mental Health Act. There was extensive debate on this, and in the end we felt that the best option was to retain the Mental Health Act as an alternative to disabled people being sent to prison for criminal offences. Clause 8 would still though stop disabled people being ‘sectioned’ under the civil provisions just because they have autism or a learning disability. We welcome more debate and discussion on this key issue.

While we have the MP’s attention with the Bill, we want to take the opportunity to ban the use of ‘secret’ panels to make any decisions about disabled people’s care – this is new Clause 10.

There are a number of other changes, please check out the drafts for more. I particularly like the new clause 3(3), which would require the employment of disabled people in teams responsible for commissioning and planning services.

One of the strongest messages I took from the debate on Draft 1 is how little trust there is now for the state to ‘look after’ disabled people. When disabled people and families were speaking about ‘safeguarding’, they meant protection from the state, not by the state. At its heart this lack of trust comes from an unequal power relationship and the constant threat of state-sanctioned violence, as Chris Hatton has written about recently.

We hope #LBBill can play a part in redressing that balance and promoting proper respect for disabled people’s human rights, like the best public bodies show now. Having considered the new Care Act I’m convinced we need to go further in the ways that Draft 2 of #LBBill suggests to get the kind of legal scheme we need.

Feedback on Draft 2 is very welcome. There can be a Draft 3 if the feedback shows it’s needed. In the meantime as soon as the dust settles on the election we will be asking everyone to lobby their new MP to support the Bill. Even though the No Rights Ignored green paper contains some of the ideas in the Bill it goes nowhere near far enough, so we will still be looking for a backbench MP to adopt the Bill at the Private Members Bill ballot in July.

MarkL

Week 4: The Art and the Politics of Listening and Not Listening to Families #107days

Our final blog post this week, on listening or non-listening to families, parents and disabled people comes from Mark Brown:

We don’t realise it but we – the families of children and young adults and adults with learning difficulties are immensely powerful. For decades now our stories have been used to shape aspects of health education and social care policy and with it the lives of tens if not hundreds of thousands. And with those stories and those policies have gone budgets of hundreds of millions of pounds and the jobs and livelihoods of a significant sector of the health, education and social care economy.
For me the problem isn’t always that we aren’t being listened to – it’s that once we have spoken – our stories and experiences are increasingly being manipulated, miss-used and appropriated. It happens to us as individuals and it happens to us as a community. The art of listening and not listening to families has become a significant weapon in the macro and micro-politics of power and we are subject to it as individuals and as a community. I’ll start with how we are listened to as individual families.

Listening and not listening to Individual Families
One of the first things that may happen to us, is that the practitioner or organisation concerned will decide if you are somebody who should or needs to be listened to, or if your opinions can be thrown onto the can be dismissed pile. I’ll come back to the can be dismissed pile a bit later. But if your opinion survives the initial assessment, a decision will then be made about whether your opinion is problematic or useful.

Useful opinions are those that make no additional demands on services. They can be especially useful if they can be used as evidence of what a good service is being provided. Whereas problematic opinions are those that have to be listened to but which demand a level, or approach to service provision that requires additional or atypical resources.

How these problematic opinions are dealt with will depend upon the ethos and expertise of the provider. The better the provider the more they will be able to deploy their resources flexibly and the more Person Centred their approach is likely to be. This kind of service provider or commissioner exists, in fact there are lots of them but the more financial pressure providers come under, the more difficult it becomes to deliver a genuinely person centred approach.

In my opinion providers who are unable to maintain or who have never had, a particularly Person or Family Centred Approach will probably begin to adopt strategies that will allow them marginalise the family. Allowing them to caste their views into the can be dismissed pile. Practitioners have a range of tools at their disposal that allow them to dismiss the views of family members and the Mental Capacity Act has become a particularly useful way of dealing with problematic family members. But it isn’t confined to that.

For those with younger children one of the most effective ways of dismissing the opinions of families was to assert that a parent had failed to adjust to their child’s diagnosis or disability. Parental demands for additional or specialist support – beyond that which was being offered – were clear evidence that a parent hadn’t yet come to terms with a diagnosis. This is seen as particularly in the case of family members who have demanded expensive out of area provision or really outrageous things like – speech therapy. Fortunately the SEND Tribunal and the Courts haven’t always agreed.

But the broader problem is that the consequence of not listening to the views of families isn’t just that a child, young person or adult may not get the speech therapy they need. The problem is that they may not get the support they need when taking a bath. They may not get the support they need to be able to manage their behaviour well enough to be able to keep themselves within their community, and then of course they may not even get the healthcare they need to keep them alive.

Listening and not listening to our community
But the Art of Listening and Not Listening is not just confined to us as individual families. We are listened and not listened to as a community. For generations learning disability was excluded from our society and it wasn’t until the post war period that things began to change at all. As for the voice of families in my opinion this didn’t really begin until Caroline Glendinning wrote Unshared Care: Parents and their Disabled Children in 1983. In the years after that York and a number of other Universities, working in partnership with the Joseph Rowntree Foundation, conducted a stream of research which genuinely listened to the voices of families. At first the focus was on the “burden” of care but with an increasing acknowledgement of the rights of disabled people, the focus turned to the creative ways in which families sought to overcome their challenges in a way that was positive and inclusive. Bryony Beresford’s Positively Parents is an excellent example of how researchers have been able to listen to and represent the voices of families not only as the carers of their children but also as their champions.

Through the late nineties and well into the first decade of the 21st Century, researchers and a good number of practitioners displayed a genuine commitment to representing the voices of families and adults with leaning difficulties. It was a genuine attempt to transform the lives of people with learning difficulties regardless of their age. Eventually this research paid off and in my opinion initiatives like Valuing People, Early Support and Aiming High for Disabled Children reflected some of the positive outcomes that listening to the voices of people with learning difficulties and to their families were able to bring.

The ethos of this process was carried into the work that the current government put into The Care Act 2014 and the Children and Families Act 2014. Families and adults with learning difficulties have been closely involved in both but I believe there is a fundamental difference in the way in which the voices of families in particular have been listened to and used. Whilst far from perfect the policy developed out of the research carried out in the late nineties and early 21st Century, genuinely used people’s experiences and opinions to inform policy development and implementation. In contrast to this the Children and Families Act in particular, has used the experiences of some families far more than those of others and as a result the policy has been skewed toward the interests of those groups within our community who were more active and whose entitlements the government felt more inclined to support.

Well that’s my opinion and we won’t really know if I’m right until we’ve had a decade of children being excluded from schools and of adults not getting the support they are entitled to because the Care Act hasn’t been adequately funded. The problem is that even then we will struggle to know, because most of the people who aren’t getting a decent service or who challenge the practice of providers – will have had their opinions placed upon the can be dismissed pile and the Art and the Politics of listening and not listening to families will have come full circle and the family that can be dismissed has become a community that can be divided, marginalised and discarded.

But it doesn’t have to be like this….

MarkL