Imogen Tyler will be taking part in this panel discussion with George Julian, Chris Hatton, and Hannah Morgan at The Futures of the End of Life conference, Lancaster House Hotel, 21st-22nd January.
I made sounds at the John Radcliffe hospital yesterday I never expected to make. Or even knew I could make. Sounds of keening, howling, inconsolable, incomprehensible grief, sorrow, despair and darkness.
I hugged him while he died.
We are now in a space I can’t describe.
Sara Ryan, blog post, July 5th 2013
The #justiceforlb campaign and the scale of its impact, has much to teach us about the entanglements of death, mourning, commemoration, mediation, activism, social movements and justice in a digital age.
Connor Sparrowhawk (known as Laughing Boy, or LB) drowned in the bath in an NHS Assessment and Treatment Unit (Slade House) for adults with disabilities, on the 4th of July, 2013. Connor was 18 years old and had been in ‘the care’ of the unit for 107 days. The NHS trust (Southern Health) initially attributed his death to natural causes. Connor’s mother, Sara Ryan, a disability researcher, had already been writing a (then anonymous) blog – Mydaftlife – about family life with Connor. After he died she, along with family, friends and supporters, began a campaign to seek justice for him. An inquest into Connor’s death began on Monday 5 October 2015, and for the first time in British history a Coroners hearing, was live tweeted, @LBInquest. The Coronor’s Jury found that Connor’s death was preventable, and that neglect had played a part. As a consequence, NHS England commissioned Mazars, an audit firm, to examine the deaths of 10,306 patients in the care of Southern Health trust between April 2011 and March 2010. The findings of this report, leaked to the BBC, revealed that the trust had failed to investigate the deaths of more than 1,000 patients with learning disabilities or mental health problems. On December 10th 2015, the leaked Mazars findings provoked the tabling of an ‘urgent question’ to the Health Sectary Jeremy Hunt in the House of Commons. Hunt made a public apology to Sara Ryan and her family, yet as we write the Mazars report is still being withheld. The national implications of the Mazars findings are staggering.
This panel, composed of George Julian, the knowledge transfer expert who has led the #justiceforlb campaign, Professor Chris Hatton, who researches health and social inequalities with a particular focus on learning disabilities and social policy, Professor Imogen Tyler, a sociologist of inequalities and Hannah Morgan, a disability studies lecturer who works on the rights of disabled people, will reflect on the multiple afterlives of Connor Sparrowhawk: the #107 days campaign and actions, the use of digital and off-line activist practices: twitter, blogging, vimeo, the LB Bill, the Justice Quilt, the Justice Shed, films, art exhibitions, the #JusticeforLB Symposium, picnics and flags, along with the tears, mourning, loss, anger and rage which have shaped this extraordinary, ongoing and growing movement for justice for people with learning disabilities.