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

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

Pledge Poster

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

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

1. Rob Marris, Labour MP, Wolverhampton South West

2. Chris Heaton-Harris, Conservative MP, Daventry

3. Sir Gerald Howarth, Conservative MP, Aldershot

4. Julie Cooper, Labour MP, Burnley

5. Wendy Morton, Conservative MP, Aldridge-Brownhills

6. Teresa Pearce, Labour MP, Erith & Thamesmead

7. Mike Wood, Conservative MP, Dudley South

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

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

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

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

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

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

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

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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.

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.

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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.

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

Day 90: Voice and choice #107days

Day 90 was adopted by Eilionoir and colleagues at the Centre for Disability Law & Policy at NUI Galway. This is why they offered to support #107days and #JusticeforLB:

This day of action is adopted by the Centre for Disability Law & Policy at the National University of Ireland Galway,as part of our 6th International Disability Law Summer School. We wanted to dedicate a day of our summer school to LB, because this year’s summer school is about ‘Access to Justice and Political Participation’ for people with disabilities.

The goal of the summer school is to work together in practical ways, through activism, litigation and alliance building in civil society to achieve meaningful legal and political change all around the world. Our summer school brings together a diverse group of teachers and students, including actors, activists, people with disabilities and their families, journalists, government officials, lawyers, policy-makers, and researchers.

The week long summer school started yesterday and this is what is happening today:

On our day of action we are focusing on the theme of ‘voice and choice’ and will have presentations on the topics of legal capacity and independent living from our international faculty members, including discussions about reform in Iceland, India, Kenya, Ireland, the UK, Hungary and Australia.

At the end of our day’s discussion, there will be a performance from an inclusive theatre company of people with learning disabilities called Blue Teapot. This performance will present a scene from the play ‘Sanctuary’ which is about relationships and love.

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The Blue Teapot actors last week, together with members of the Inclusive Research Network, Connect People Network, and National Platform of Self Advocates of Ireland, helped to launch a private members bill sponsored by Senator Katherine Zappone as part of the ‘right to love’ campaign.

Just before Blue Teapot’s performance we will show a Youtube video to celebrate Connor’s life, and Blue Teapot are dedicating their performance to Connor’s memory.

We are very grateful to the organisers, the Blue Teapot actors, the participants and attendees at the Summer School for taking the time to learn about LB, and we hope that they will continue to spread the word about #JusticeforLB when they return home. You can read more about the Summer School in the links above or here, and you can hear more from the Blue Teapot company discussing their play Sanctuary below:

Day 72: Enabling equality #107days

Day 72 was adopted by Tom Shakespeare. He is giving the BSA/British Library annual Equality lecture this evening and he asked to adopt the day and dedicate his lecture to LB. We’ll add his presentation after it’s been given, but for now this is what Tom is talking about:

Enabling equality: from disabling barriers to equal participation

In this talk, the researcher and disability rights advocate Dr Tom Shakespeare will explore what it takes to achieve equality for disabled people, in the era of the UN Convention on the Rights of Persons with Disabilities and ‘welfare reform’. Barrier removal and reasonable adjustments make workplaces more accessible, but only if the extra costs which disabled people face are met through state benefits. Because disability is so diverse, ensuring that all disabled people can flourish requires more than simply levelling the playing field. Where next for disability equality?

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It would seem this discussion is needed now more than ever given the latest Southern Health development of a blanket ban on baths being taken in John Sharich House (the remaining Southern Health provision after STATT was closed), reported following an unannounced CQC inspection. Person centred care, what’s that about then?

Day 58: Different, not less #107days

Day 58 is being shared between two events, as we move into the second half of #107days more and more days are being shared. We’ll keep blogging here and sharing what is happening, it’s just some days you’ll get double your money! Today was adopted by Kabie, Pam and Geraldine.

Kabie, and Autism Rights Group Highland (ARGH) adopted today and this is why:

#JusticeforLB is important because everyone everywhere needs to know what happened to Connor. He was one of our community, he was a vibrant young man who should have been in a safe space; others are still at risk unless everyone starts to listen. As a community we are angry, we want this to be a tragedy that is never repeated. Connors family have been treated callously and without respect. Every member of society deserves to be treated as the person that they are, without prejudice. It seems that right now some people are seen as more deserving of human rights than others, that has to change. Just because we’re different doesn’t mean we’re less. Human rights are for everyone and there should be no such thing as the wrong type of human.

They will use today to raise awareness about Connor and #JusticeforLB at their Autism and Ethics conference in Inverness, being run in partnership with NAS Scotland:

Our conference is all about ethics from an Autistic point of view, the speakers are all Autistic; it’s a conference where we get to be heard rather than just spoken about.

Kabie will talk about LB in her opening session and play the youtube video, ensuring that all attendees know about LB and the campaign for justice. Simultaneously, somewhat further south, there will be another conference taking place. The West Midlands Medical Sociology Group also adopted Day 58 for their conference, Hard-to-Reach or Under-served?: Community and participatory approaches in health research, convenors Pam Lowe and Geraldine Brady had this to say:

We first learnt of Connor when we met Sara at Warwick University where we were all studying for PhDs in sociology as mature students attempting to juggle motherhood and study in the health/disability area. Geraldine’s PhD focused specifically on children and young people with ADHD and Pam has a son with autism. As Sara’s PhD was on parenting and disability our lives and work were all connected to and with each other in different ways.

After completing our PhD’s we all left Warwick to work in different universities, but still occasionally meet on the academic circuit. Geraldine and Pam went on to co-convene West Midlands Medical Sociology Group and in May 2013 we organised a joint conference with Sara and the Disabilities Studies Group. The theme of the conference was the impact on austerity on experiences of disability and illness. By the day of the conference, Connor had been admitted to the Unit. The irony that the last day we saw Sara before Connor’s preventable death was spent discussing limitations and frustrations of disability provision is not lost on us.

This year’s conference is called ‘Hard-to-Reach or Under-served?: Community and participatory approaches in health research’. Those in the health world will recognise the concept of ‘hard-to-reach’ which is a label given to communities that do not have the same access to health services. All too often, this is code for ‘not-complying’ with services, appointments, screening, health promotion etc etc. The alternative ‘under-served’ has been suggested as a better description as the emphasis is on why health services are not being delivered to particular groups. Importantly to us, the focus on community and participatory approaches is about how we work with and listen to people who are often side-lined/overlooked/ignored in health services. The conference papers are about reaching people and groups that are not always listened to in the area of health, including those with learning disabilities.

This is why we feel that it is particularly appropriate to dedicate the conference to Connor. If the Unit had listened meaningfully (so with care), Connor would not have died. If health service providers or commissioners had listened and cared before his admission, he might not have needed to be admitted in the first place. The introduction to the conference will introduce Connor to the delegates and we have included Connor’s postcards in the conference packs, and hope that this will raise further awareness of the tragic consequences of ignoring the needs of all marginalised groups.

Day58evening visitor

We were asked for an image to accompany the text for the campaign website. The image we have chosen is a photo taken by Pam’s son. Jamie’s primary interest is animals and, whilst he might not ever talk to you about it, his passion shines through his photographs. In a way, this is just like the moth captured in this image. It fluttered around in the dark barely seen, but get the right light and its beauty is revealed.

We hope that both conferences go well and that participants join in the campaign for #JusticeforLB and all dudes. Most importantly we hope people will take on board Kabie’s words ‘Just because we’re different doesn’t mean we’re less’.

Day 30: What would you do? #107days

Day 30 was adopted by Andreas Dimopolous, who managed to combine research, human rights and art history. This is what he had to say:

As a researcher, I was drawn to disability rights when I first read about the early sterilisation case law of the English courts. I developed a theoretical argument as to how to protect the rights of persons with disabilities under English law. As an academic, I am doing what I am supposed to do.

Then real life happens and kicks in the door of the ivory tower of research. The death of LB was such an event. How do I, as an academic, researcher and human being respond to this?

The central claims of my research is that we need more human rights for persons with disabilities in every single context of their daily lives. We need to enact the CRPD under UK law. We need to make every healthcare and social care professional accountable to human rights (if not by means of civil liability, then criminal liability). We need to develop awareness of persons with disabilities as bearers of rights, to which correspond correlative duties from all of us.

Faced with LB’s death, the best and most useful thing I can do is to do more research, which strengthens the central claims of my research.

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I was planning, for a long time, to submit an abstract to the Art Historians Association Conference on Hogarth’s Scene in a Madhouse. Based on the social model of disability, I considered that a reading can be made of this engraving (or the painting on which the engravings are based) which depicts the disabling gaze in the interaction of the fashionable ladies and the inmates of the asylum. The powerpoint of the presentation is here.

As the participants in the conference stream also noted, Hogarth is also ironically asking: Who is mad? What are those ‘normal’ ladies doing in a place like this? What folly is this?

Our current law and social practice, even after 300 years from Hogarth’s time, has not rendered such questions meaningless. We retain laws and practices which disable and disempower persons with disabilities. Time for change.

R.I.P. LB.