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Week 15: The Tale of Laughing Boy #107days

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

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

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

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

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As for Sara’s hopes for the future:

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

Final word goes to Rich:

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

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

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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 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.

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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.

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

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

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

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

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

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

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

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

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

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

The non-apology findings were:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Week 11: Raising awareness #LBBill… the story so far #107days

Last week, Week 10, we asked the amazing collective of campaigners that make up #JusticeforLB for help. We asked you to tell your local MP about the #LBBill and ask for their support in the forthcoming Private Members Bill ballot on Thursday. We asked and you delivered, we couldn’t be prouder or more grateful for your response. This is what the #LBBill map currently looks like:

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We know that the map gives a good overview, but that it’s hard for some of you to see whether your MP has been contacted. That’s ok because we’d like all MPs to be contacted as many times as possible, we think it’s important that MPs know their constituents are interested and keen to see the provision in the #LBBill enacted, so don’t worry about duplication, that’s a good thing.

We know now that 285 MPs (out of a total of 650) have been contacted about the #LBBill. It is only a week ago that we asked for your help, and what a response in a week. Of the 285 MPs who JusticeforLB’ers have contacted, 137 are Conservatives, 1 Green, 113 are Labour MPs, 4 Liberal Democrats, 4 Plaid Cymru, 25 are SNP and 1 is UKIP.

Not only have 285 MPs been contacted, but 84 of them have been contacted at least twice, 24 MPs three times, 8 MPs four times, 3 MPs (Caroline Lucas, Diane Abbott and Cat Smith) have been contacted at least five times and Paul Blomfield, MP for Sheffield Central has been contacted at least six times. We say at least because we’re aware that despite our best attempts we may have missed some contacts, or not know about them. That’s ok too because once we know who has a spot in the Private Members Bill ballot we’ll ask anyone who has contacted them (or lives in their constituency) to let us know.

So please keep contacting your MPs, if you’ve not had a chance yet please tweet them, email them or write to them. If you have contacted your MP please encourage a friend, family member or colleague to contact theirs. If you’d like a reminder of why the #LBBill is important, you can:

If you’d rather watch a film, you can check out the introduction to the LBBill and where it came from here:

Finally, if you’d like to meet some of the people for whom the #LBBill could make a difference, then check out:

and

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Week 10: Why the #LBBill is important to me #107days

Today’s blog post is a guest blog from John Lish. When the first draft of the #LBBill was shared, John was one of the many people who provided feedback, and his feedback is directly reflected in, and vastly improves, the current draft of the Bill. As part of Week 10, an action week to encourage you all to write to your MP and tell them about the Bill, John offered to share a blog post about why the Bill was important to him. Here it is:

Although I had heard of Connor Sparrowhawk and his death through news reports, I hadn’t been aware of last year’s #107days campaign. It was a conversation with Claire Jones (a contributor to the Justice Quilt) during a break in our work with the Barker Commission that brought the Justice for LB campaign and the LBBill to my attention. I joined the Facebook page set up by Mark Neary to discuss the LBBill shortly afterwards.

Now, like Connor, I am on the autistic spectrum but that in itself doesn’t entail motivation or importance to this campaign. It allows some perspective and insight but the essential drivers to support this campaign are a visceral sense of injustice and a desire to see change occur that allows everyone to have the support that enables control over their lives which most take for granted.

Yet there is a personal element to my support and it revolves around the idea of time. I was diagnosed as being on the spectrum in my late 30s a few years ago. Thinking back, I can see where my autistic traits interplayed through my life such as my intolerance of adult authority figures if I thought them idiotic and would express that opinion. These days, I suspect that 7 year old would be diagnosed with ‘oppositional defiant disorder’ and my parents offered drug management of said condition. In the 1970s, I was just considered to be a badly behaved awkward git. While today’s world is different, I’m not entirely sure that it has progressed in an entirely beneficial manner.

That seems to be particularly true when dealing with teenagers who happen to be autistic and/or have learning difficulties. My teenage years were difficult for me and my family and there were periods where none of us coped with my depression and behaviour. The difference made to my family and I was the community support from the local Child and Adolescent Mental Health Service. It was appropriate and gave me the space to work through the complexities within my head.

Reflecting now on what occurred some 25 years ago, the definition of adolescent seems broader than today. The past wasn’t obsessed with the notion of “transition” that exist today and having rigid barriers between child and adult services. There was less money around as well which may seem a bad thing but given the growth in ATUs which have coincided with the pump-priming that occurred in the NHS from the turn of the century, more money appears to have facilitated more interventions with worse outcomes.

There also seems to be more labelling of conditions which is a concern when issues such as mental health problems are seen as a result of having autism for example. That may be true for some but equally we shouldn’t lose sight of someone with autism who just happens to have a mental health problem. Their autism will affect the state of their mental health but we shouldn’t assume it drives their mental health issues as the individual gets consumed within the condition. This is why clause 8 of the #LBBill is so important.

This is why I feel fortunate. Back during that dark period, I didn’t have a label of a condition. I was just a young man who was depressed, alienated and inarticulate. Importantly I was given the time and space to find myself. A process that has continued to this day. The point about autism is that its a development disorder but it doesn’t mean the absence of development, merely its a different process. Sometimes that is close to normal development or it can be very different in expression or timescales. It is always very human.

That perhaps is the hardest part of this #107days campaign. That Connor didn’t get the time and space he deserved and that absence of time is marked by this finite period. That feels very cruel.

So the #LBBill is important to me because all the dudes deserve the support, time and space to live their lives however and whatever that looks like. The support I’ve had, the time and space to explore and experience the world shouldn’t be a gift to be bestowed but simply a human right of expression. There is some distance to go but if the #LBBill became an Act then it would be an important step towards achieving that.

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