Maintaining momentum after #107days

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

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

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

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

How could the world keep spinning?

Why does this house no longer feel like home?

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

Deciding who should live or die?

I no longer feel like smiling,

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

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

The choice was never yours to make!

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

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

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

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

Nothing lasts forever,

But eighteen years is hardly time at all.

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

My world no longer filled with laughter.

My world no longer filled with joy…

Laugh on, laughing boy.

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

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

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As Katherine emailed ‘Just to say that the response to #JusticeforLB was amazing in Melbourne and Singapore and it was so exciting for us to watch the #LBBill emerging on twitter while we’ve been away’.
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Over the last month, awareness raising has also continued at a pace. Chris and Becky were tweeting from the IASSID Conference in Vienna and Max presented on #JusticeforLB at the #PDXGathering in Portland.

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

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

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

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

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

Day 82: Challenging attitudes, changing lives #107days

Day 82 was adopted by the Partnership Steering Group of the Learning Disabilities Studies course at Manchester. They have shared some information about the work they do and why they got involved in supporting #107days and #JusticeforLB:

Learning disabled people have been and continue to be excluded from academia, as students, teachers and researchers. Most of the times, when learning disabled people are mentioned in academia it is as passive research subjects. Non-disabled ‘academic’ researchers measure different aspects of learning disabled people’s lives, write up their results and teach it to students. The disabled people themselves get very little say in determining what should be researched and how. In a similar way, university programmes that prepare staff for working in social, health and educational services rarely include learning disabled people as experts who teach students the realities of their daily lives and their priorities.

This exclusion creates a strong sense of ‘us’ and ‘them’. In universities ‘us’, the non-disabled, discuss and determine the life courses of ‘them’, the learning disabled, those who unlike us, cannot know what they want or value, cannot make responsible choices, cannot be part of our expert discussions. ‘Us’ – the group of benevolent experts, will decide what is “in their best interest”, and inform ‘them’ of our decisions (if we are nice enough to bother informing anyone at all). It is this kind of culture that allowed the ‘experts’ at Slade House, the Treatment and Assessment Unit that LB was in, to dismiss his epileptic seizures as attention seeking behaviour. After all, it is only the knowledge of non-disabled experts that counts, and it is only non-disabled people that can become experts.

The Partnership Steering Group (PSG) at the University of Manchester has worked for the last 12 years to challenge this culture of segregation, exclusion, and de-valuation. The group is comprised of learning disabled members, academics, students and supporters who work together to run the learning disability studies programmes as well as carry out research activities. Members of the PSG teach on some of the programme modules, informing students about their life experiences and the kind of society they want to live in. Together we write and publish research that is aimed at making a real difference to learning disabled people’s lives. In 2012 we have edited a special issue of the BJLD dedicated to inclusive research. This was the world’s first academic journal edited by learning disabled people. We believe that partnership work is the only way for promoting social inclusion and equality in our society, challenging the deadly ‘us and them’ culture that permeates our society and produces abuse.

Yet, partnership work in academia is continuously under threat. Ironically, while learning disabled people take part in teaching and research, they are still prevented from being students on many university courses. Further, the increased marketization of higher education in the UK makes universities more and more intolerant to partnership work. After all, there is not much of a market for social justice. In part, this has resulted in the University of Manchester making the decision to close the two learning disability studies programmes. If we continue to ignore and silence learning disabled people in academia, it is hardly surprising that we continue to encounter abuse and neglect year after year. Closing down programmes that aim to challenge the segregation and devaluation culture will clearly impact on the quality of services learning disabled people receive.

PSG adopted today for their conference Learning Disability Studies in Academia: Challenging Attitudes, Changing Lives. The conference is asking the value of Learning Disability Studies, exploring how it can make real difference to the lives of learning disabled people, as well as playing an active role in challenging abuse and improving professional practice, and making universities more inclusive of people with a learning disability.

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The conference programme, devised and put together by the group, looks exceptional. You can see what is happening here and we’re delighted that there are many #JusticeforLB supporters on the programme, including Sara. We’d like to thank the Partnership Steering Group for their support.

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.

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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.