Day 101: An animated, poetic call to act #107days

Day 101 is another shared day, this time between David and Trish.

This is what David had to say about why he chose to support #107days and #JusticeforLB:

When I first enquired about sponsoring one of the 107 days I wasn’t quite sure what I was going to do, I just felt compelled to do something. Having agreed to prepare a prezi with Sara for her slot at the 3 Lives Event earlier in the year and then meeting her and listening to her speak, for me this was a no brainer. Why? Well, because aside from the sheer frustration I felt at hearing Connor’s story,  seeing Sara hold it together whilst presenting in order to get everyone to sit up and recognise that this actually happened. I was also very embarrassed. Embarrassed by the fact this could happen, embarrassed that this has happened so many times before, and embarrassed that I am part of system that has let Connor and so many others down so badly.

When I think about my own career and what has driven me to want to do more, make change and challenge this very system; I cite three core experiences all of which resulted in the self same feelings of embarrassment, annoyance and at times times anger. I offer these here, for the reader to contemplate, digest and act; yes to act. Just in the same way you have taken action to arrive here at this very site, to read these very words and to want to make change and denounce any form of abuse, neglect or infringement of rights.

So, number one. In 1987 whilst working in a residential care setting I accompanied four people with learning disabilities to visit a local pub. Sadly, no sooner had we purchased our drinks, the manager beckoned me over and said ‘no disrespect mate, but I don’t want them in my pub’. I had to go back to the people I was with and ask them to ‘drink up’. We were made to leave and all eyes across the pub tracked our departure as we were ushered out. The next day I complained to the brewery and went to the local press. The community revolted and the landlords reputation was besmirched. Justice.

In 1991 whilst undertaking my nurse training, I observed two members of staff assault one of the residents of the home where I was on placement. I wont go into the details, but lets just say this happened out of the blue. On their part, I never really got to know if this was some random act of boredom, a show of their status or prowess, a reminder to the people who lived there to ‘know their place’ or simply ‘a game’ like the ones staff described  during the panorama footage. When I spontaneously reacted during this event, I was taken by the two staff members (interestingly both of them were ex military personnel) and dragged outside in the snow and into a closed courtyard. I was given a clear message that I ‘better not mention this anything to anyone, or else’. The next day I made a formal complaint and reported what I saw. An investigation ensued and the two thugs were later dismissed. Justice.

In 2001 I supported a gentleman with learning disabilities to attend a hospital appointment in relation to the chronic ulcers on his feet and legs. During the course of the appointment the Consultant, without asking, led seven medical students into the cubicle and proceeded to talk to his protégé’s about this gentleman’s ulcers and his ‘mental subnormality’, bestowing on them, what he evidently thought was of scientific value. The gentleman, as the patient, dealt with this by pulling the jumper he was wearing over his head. The Consultant quite oblivious to this continued his oration, going on to make the announcement that the ‘best thing for this patient is to amputate his left leg’. I was incensed, outraged and again, embarrassed. The next day I wrote a letter of complaint to the Chief Executive of the Acute Trust, but instead of merely relaying my annoyance, I proposed a solution. This was gratefully accepted by the Chief Executive and as a result, my colleagues and I developed a package of awareness training for both existing hospital staff as well as medical students.

David feels strongly that sometimes we all need to act. In fact I’d go as far as to say (personal view) that by not acting, we are all endorsing this dire level of status quo, therefore we should not just feel embarrassed, but also culpable. David chose to act in Connor’s name too. He has crafted a very personal interpretation of what happened to LB. It has taken many hours of time, and much love and persistence (whatever you’re imagining double it, including one version becoming corrupted hours from finishing requiring him to start again). David could have very reasonably quit at that point but he persisted and produced this for you all to enjoy, and act on:

Sometimes assertive action is required, it’s a response to these kind of episodes, its not often the way you would have wanted things to go, but instinctively you feel you just have to do something, make change, denounce abuse or uphold peoples rights. The animation is my interpretation of Connor’s journey through the Assessment and Treatment unit. #JusticeforLB? I hope so.

David’s animation is accompanied today by another creative endeavour to act as a prompt for thought, reflection and action. Trish had this to say about why she is supporting #JusticeforLB and #107days:

I am shocked and horrified by LB’s death and by the 1200 premature deaths per year of learning disabled people in our care, that’s our care, public provision. And by the determination not to look too closely into those deaths (no review board to help find and fight underlying causes). Including the death before us – missing brain tissue? Optional pathology guidelines?

We need to speak, don’t we?

Trish has penned this poem in memory of LB:

Learning Disability 2013: in memory of LB

A child, my father, playing in the fields,

needed the bathroom in his old friend’s house,

took a wrong turn – opened another door –

came face to face with a much older child

he’d never seen before.

He is long gone, I don’t know what they said.

 

Bewilderment and awe played on his face.

How many families hid a child? he asked,

not spoken of, perhaps the doctor knew,

perhaps the priest. Why silence, was it shame?

more likely fear – there wasn’t any help.

Except the institution.

 

DON’T

say it couldn’t happen here!

Don’t say we offer treatment, pay for care,

When all too often there is no-one there,

urgent requirements must wait weeks or months,

and information’s scattered on the wind!

Stop the bus!

You have the wrong driver –

roaring us back to the horrors of the past!

 

Skilled carers with the families could ensure

the bus is going in the right direction.

To a place of joy, space and old buses,

to the farm for days of work and giving,

home to parents, brothers, sisters, rest.

Day 100: JusticeforLB hits Glastonbury #107days

Day 100 was adopted by Dan, Rebecca, Ruby and Rosa. We’re delighted that so close to the end of #107days there is an opportunity for more people to learn about LB and celebrate his life, this time at Glastonbury #Glasto2014

We got to know Sara, LB’s mum, initially through her research and writing, chats at conferences, inviting Sara to speak at conferences we have organised and in various parts of the world at Disability Studies conferences. We are sure people know this but Sara is a really respected researcher in the field. She does in practice what she writes about in articles: inclusive and participatory research. Especially, her work is know by us for foregrounding the important role played by researchers who are also mothers of disabled children.

For example, her paper  ‘Busy Behaviour’ in the ‘Land of the Golden M’: Going Out with Learning Disabled Children in Public Places, was a real gift shift for us: especially the line where she talks about the community ‘not doing odd’. We loved that phrase and have used the paper in lots of our teaching and writing. (Here is a link to the paper).

We also read Sara’s blog and were struck by the humour and affirmation of LB and his family. It was a joy to read. And then LB died. We continue to read her blog and recently Dan had the pleasure to catch up with Sara in person. This was bitter-sweet, of course. We were there for the Manchester partnership conference and the reason we were there, of course, was because of honouring the #JusticeforLB campaign. We wished we were meeting for different reasons. LB did not deserve to die. The reason he died says so much about the disabling society that we live in and the violent institutions that continue to fail LB and all the other dudes. We wondered, together, if our research really matters anymore. Can academia contribute anything to contest these conditions of disablism? On reflection, we think that research/ers and the academy can do much to challenge disablism but this can only happy if we work collaboratively and in alliance with organisations of disabled people and families of disabled children. It is also about using broader methods of communication, not simply academic papers.  Sara’s blog has been a shining example of this, reaching audiences and getting people to understand difference productively.

Social media is helping to raise public awareness of disablism and what we have seen with #JusticeforLB campaign is a global galvanising of like-minded souls who are not prepared to accept what happened to LB without fighting back. And so to our adopted day of the campaign: which we thank Sara, her family and the campaign for allowing us to adopt. Sara has written extensively about how much humour and joy LB gave. In recognition of this we want to use our time at Glastonbury festival to publicise JusticeforLB. We ask everyone to look out for our flag:

Day100

We will be there with our daughters Ruby Haf Lawthom Goodley and Rosa Cariad Lawthom Goodley (pictured with the flag above). They have been really affected by LB’s news and have organised to make loom bands to sell at Glastonbury to further raise money for the campaign. We have also bought a 15 feet long flagpole and hope to get JusticeforLB captured by the BBC coverage. In addition, we hope that other festival revelers will ask us about the flag and we look forward to telling them that LB was a cool dude and what happened to him should NEVER happen again. So look out for it folks: just don’t expect to see it during the Metallica set. We will, though, make sure we get a picture by the cider bus: we think LB would like that.

If you are at Glastonbury and see the #JusticeforLB flag, or flyers, or Dan, Rebecca, Ruby or Rosa, please send us a pic. We’d love to share in your Glasto experience.

— Dan Goodley (@DanGoodley) June 26, 2014