Day 84: Mothering in the extreme #107days

Day 84 was adopted by Chrissie. Here’s why she is supporting #JusticeforLB and #107days:

I think Sara is brill, and met her several years ago, along with Katherine Runswick-Cole (Mum’s and sociologists together), oh and we’re going to write a book, but it never happened, YET.

I saw Sara at a conference in Coventry, not long before LB’s death. Things were not okay, and Sara looked pretty drained… I went away with a heavy heart.

My daughter is 27 years old, learning disabled, fun, and one of her big loves is cutting out piccies from the Argos book – they tend to be bottom drawer items, and then she makes lists. She also loves performing!

I cannot feel what Sara is, but do worry for a future for my dude-ess and all others out there.

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Chrissie wanted to do something to support the #107days campaign and today she is giving a seminar for staff and students at Aston University. You can check out Chrissie’s presentation below and we think it looks phenomenal:

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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 34: What sociological imagination? #107days

Day 34 was adopted by LB’s Mum, Sara, who is presenting at the postgrad pre-event for #BritSoc14. She has this to say:

Today I’m off to Leeds, to take part in a pre-conference event before the British Sociological Association Annual Conference. This is a bit of funny event for me. If someone had told me 10 years ago that I’d be invited, I’d have fallen off my chair with disbelief.

I loved sociology from my A level lessons back in Essex in 1981 when our teacher was off campaigning at Greenham Common more than teaching us. When she was there, she was an inspiration. In her absence we had a locum who was pretty underwhelming. She kind of lost the attention of the class of 17 year olds when she talked about ‘orgies’ using a hard ‘g’. But it didn’t matter. Delight and interest was ignited.

It was more than 10 years before I returned to university at Oxford Brookes to study sociology and anthropology as a mature student. At the same time LB, as a pup, was in the process of being diagnosed as “different” in a problematic way. I was able to make some sense of the way in which he was treated as ‘unacceptable’ or ‘other’ through the course, and the work of people like Erving Goffman, Robert Bogdan and Spencer Cahill.  I went from Brookes to Warwick to do a PhD under the informed, thoughtful, creative and humorous supervision of Janet Read. Another inspiration. This was, again, a pleasure. Of reading and immersing myself in writing and research around disability, difference and public interactions. Of mothering and disability studies.

LB 2

I landed my first full time academic post in 2007, brimming with blinking optimism and a firm belief that robust research could inform change.

This optimism began to be dented in recent years when faced with the divergence between policy talk/evidence and what LB was experiencing in terms of support, encouragement and an imagined future. Basically all talk and no action. An extension of what he (and we) had experienced since diagnosis but worse, because it was about his future.

Pah. C’mon sociological community, I thought. Step up. Whatchadoing?

Not an awful lot really. A wealth of brilliant research conducted by the likes of the Tizard Centrethe Norah Fry Research Centre, the Centre for Disability Research and other drops of brilliance* dotted around various universities but also pretty much silence when it came to more mainstream sociological engagement with ‘learning disabled’ people. A year or so ago I contacted the BSA about setting up a Disability Study Group. ‘Ain’t we got one?’ was the puzzled response. There are numerous study groups for pretty much every topic under the sun. A search back through BSA records confirmed that there had never been one.

Wow. A discipline that is, or should be, about understanding the social. Engaging with different forms, shapes, spaces, emotions and embodiment. Examining social issues and making visible underlying structures and enduring inequalities… Disability, and particularly learning disability? Forget it.

So I’m trekking up to Leeds. To chat with postgraduate students and ask them why they think learning disabled people are ignored/marginalised in sociological research. And to reflect on whether we ain’t very good sociologists or whether the discipline is part of the problem.

So, a funny event. And one I’m dedicating to LB. If it wasn’t for him, I wouldn’t be going. Or asking these questions.