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People with learning disabilities are still not recognised as fully human People with learning disabilities are still not recognised as fully human
(6 months later)
Stephen Bubb’s report last week on the Winterbourne View scandal is his third in the last 18 months Winterbourne View – Time for change, Time is Running Out and The Challenge Ahead. He states at one point; “I am acutely aware we do not just want more reports”. No. We don’t need any more reports. There has been too much talk and way too much money flung at the wrong people.Stephen Bubb’s report last week on the Winterbourne View scandal is his third in the last 18 months Winterbourne View – Time for change, Time is Running Out and The Challenge Ahead. He states at one point; “I am acutely aware we do not just want more reports”. No. We don’t need any more reports. There has been too much talk and way too much money flung at the wrong people.
Related: Appoint individual to protect rights of the vulnerable, report suggests
Back in 2011, when Panorama exposed shocking abuse to patients with learning disabilities at Winterbourne View, our son, Connor (or Laughing Boy) was just 16, loving school, life and buses. He was refreshingly funny and unassuming (and diagnosed with autism and epilepsy). In March 2013, the Confidential Inquiry into Premature Deaths of Learning Disabled People (Cipold) found that learning disabled people die on average 20 years earlier than the general population. At about the same time, Connor was admitted into a short-term local assessment and treatment unit (ATU) run by Southern Health NHS foundation trust. He’d become uncharacteristically anxious and unpredictable. We thought he was in a safe space.Back in 2011, when Panorama exposed shocking abuse to patients with learning disabilities at Winterbourne View, our son, Connor (or Laughing Boy) was just 16, loving school, life and buses. He was refreshingly funny and unassuming (and diagnosed with autism and epilepsy). In March 2013, the Confidential Inquiry into Premature Deaths of Learning Disabled People (Cipold) found that learning disabled people die on average 20 years earlier than the general population. At about the same time, Connor was admitted into a short-term local assessment and treatment unit (ATU) run by Southern Health NHS foundation trust. He’d become uncharacteristically anxious and unpredictable. We thought he was in a safe space.
In July 2013, Connor drowned in the unit. He was left to take a bath unsupervised despite clear evidence of increasing seizure activity.In July 2013, Connor drowned in the unit. He was left to take a bath unsupervised despite clear evidence of increasing seizure activity.
I can’t explain what it’s like to have your child die a preventable death in NHS care. To drown in a bath. It’s impossible to make sense of. A senselessness compounded by the trust board minutes immediately reporting that Connor died from natural causes. In an almost numb space of horror and disbelief we wanted accountability and change. Drawing the dots between the Cipold findings and the response to Connor’s death, we persuaded David Nicholson, the then chief executive of NHS England, to commission a review into how other unexpected deaths in Southern Health were investigated.I can’t explain what it’s like to have your child die a preventable death in NHS care. To drown in a bath. It’s impossible to make sense of. A senselessness compounded by the trust board minutes immediately reporting that Connor died from natural causes. In an almost numb space of horror and disbelief we wanted accountability and change. Drawing the dots between the Cipold findings and the response to Connor’s death, we persuaded David Nicholson, the then chief executive of NHS England, to commission a review into how other unexpected deaths in Southern Health were investigated.
The #JusticeforLB campaign emerged; became, and remains, a diverse collective of people, with no budget, staff or hierarchy, no rules or formal structure, just commitment, love and dedication. We’ve collectively produced a private member’s bill, a short film, two animations,a short play, a Justice quilt, a Justice flag that has waved high at two Glastonbury festivals and been snapped with the New Zealand disability rights commissioner in Auckland. The review into deaths commissioned by Nicholson was eventually published before Christmas and reveals figures far worse than we imagined. A chilling disregard for certain people, in life and in death.The #JusticeforLB campaign emerged; became, and remains, a diverse collective of people, with no budget, staff or hierarchy, no rules or formal structure, just commitment, love and dedication. We’ve collectively produced a private member’s bill, a short film, two animations,a short play, a Justice quilt, a Justice flag that has waved high at two Glastonbury festivals and been snapped with the New Zealand disability rights commissioner in Auckland. The review into deaths commissioned by Nicholson was eventually published before Christmas and reveals figures far worse than we imagined. A chilling disregard for certain people, in life and in death.
Meanwhile the government’s Winterbourne joint improvement programme fell apart, despite a concordat signed by 48 organisations; numerous meetings; endless talk; initial fake cheeriness and a hefty budget. The promise that the 3,500 or so people in units across the country would be allowed to lead lives worthy of the name failed to materialise. The numbers incarcerated remained constant, Norman Lamb, the then care minister, reluctantly talked of “abject failure” and the baton was passed to Bubb.Meanwhile the government’s Winterbourne joint improvement programme fell apart, despite a concordat signed by 48 organisations; numerous meetings; endless talk; initial fake cheeriness and a hefty budget. The promise that the 3,500 or so people in units across the country would be allowed to lead lives worthy of the name failed to materialise. The numbers incarcerated remained constant, Norman Lamb, the then care minister, reluctantly talked of “abject failure” and the baton was passed to Bubb.
Related: Why did Connor Sparrowhawk die in a specialist NHS unit? | Saba Salman
But he isn’t the problem. It’s the continuing lack of recognition of learning disabled people as fully human. And a continuing and baffling insistence on Winterbourne View as the cultural touchstone of inhumane practice in early 21st-century Britain (ironically) allowing more recent atrocities, including the deaths of Connor, Stephanie Bincliffe, Thomas Rawnsley, Nico Reed, Richard Handley and so many others, to be silenced. His final report calls for a commissioner with a statutory duty to promote, enhance and protect the rights of people with learning disabilities and their families in England. But we don’t need additional (human) rights. We are all human.But he isn’t the problem. It’s the continuing lack of recognition of learning disabled people as fully human. And a continuing and baffling insistence on Winterbourne View as the cultural touchstone of inhumane practice in early 21st-century Britain (ironically) allowing more recent atrocities, including the deaths of Connor, Stephanie Bincliffe, Thomas Rawnsley, Nico Reed, Richard Handley and so many others, to be silenced. His final report calls for a commissioner with a statutory duty to promote, enhance and protect the rights of people with learning disabilities and their families in England. But we don’t need additional (human) rights. We are all human.
Reforms pledged by NHS England shouldn’t need a bespoke commissioner to ensure their delivery. Bubb’s recommendation simply weaves further layers of unnecessary bureaucratic complexity and costly pointlessness into an already unworkable fabric. Maybe those with the power over lives should allocate a bit of diary time to hang out with and get to know people and families, explore everyday life, hopes and aspirations, and begin to recognise and understand the different contours of a cracking life.Reforms pledged by NHS England shouldn’t need a bespoke commissioner to ensure their delivery. Bubb’s recommendation simply weaves further layers of unnecessary bureaucratic complexity and costly pointlessness into an already unworkable fabric. Maybe those with the power over lives should allocate a bit of diary time to hang out with and get to know people and families, explore everyday life, hopes and aspirations, and begin to recognise and understand the different contours of a cracking life.