I’m on a train on the way back from Cardiff. I was performing there yesterday at the Unity, an amazing inclusive arts festival. I’ll write about it in more detail soon, but not going to be the subject of today’s post.
The Festival was full of incredible work by disabled and non-disabled artists, including many learning-disabled performers. The atmosphere was brilliant, inclusive, and equal. Everything our world should be.
All of this amazing creativity, happening on July 4th (Independence Day) sits in stark contrast to poignant anniversary this date represents for one particular family.
On 4th July 2013 Connor Sparrowhawk (known online as LB, short for Laughing Boy), a fit, healthy young man who loved buses, London, and speaking his mind, and who happened to have autism and epilepsy, had a seizure in a bath at Slade House Assessment and Treatment Unit, and drowned. As an independent investigation later confirmed, LB’s death was entirely preventable. And now his relatives are fighting for justice, for him and for other young people.
On the second anniversary of his death his family have shared this incredibly moving film.
One of the most appalling aspects of LB’s story is that it’s not an isolated incident. Eight months before his death, my friend Amy died in the care of a privately-run psychiatric unit. Like LB’s family, Amy’s had been fighting for years to get the help and support she needed. And again like LB, Amy was placed in a specialist unit that was supposed to assess and address her needs.
Amy had Tourettes and was just 14 when she was found in her hospital room with a scarf tied round her neck. Paramedics were called and managed to resuscitate her, but no one from the Priory clinic travelled with her in the ambulance and her family were not informed for several hours. She died in the early hours of the following morning.
The charity Inquest have been supporting Amy’s family since her death. In a case study in 2014 they wrote: “Amy’s case raises serious questions concerning her treatment and care by the clinic, including: their contact and communication with her family; her overall treatment; medication; therapeutic care; the use of restraint; the adequacy and quality of observations; the management of risk including risk assessments; the management and safety of the environment; and search policies. Other questions also arise around staffing levels, the adequacy of consultant input, the supervision of nursing staff, compliance with key policies and record keeping.”
The clinic refused to carry out an independent investigation into Amy’s death and the Serious Incident Investigation that followed was conducted by another part of the Priory Group.
Over two-and-a-half years later, Amy’s family are still waiting for an inquest and for the opportunity for the details surrounding her death to be independently examined.
But why should families have to fight for years for the deaths of their children to be investigated properly so that other young people aren’t failed in the same way?
To me this is part of an even bigger issue about how the lives of disabled people are valued and supported.
There are countless other examples of disabled people having to restrict their lives, their expectations and their dignity – disabled people being told to use incontinence pads rather than being supported to use the toilet when they need to, or deaf people being required to have ‘non-communication days’ at work.
The expectation that disabled people should lead restricted or part-time lives, the closure of the Independent Living Fund, and the deaths of LB, Amy and many others, hold up a mirror to our shockingly unequal society.
LB’s film made me cry, and it made me angry. His family talk about his love of asking ‘why’ questions and as the train hurtles through the British countryside questions stream through my head too:
Why isn’t there a huge clamour for his death to be fully investigated?
Why as a society are we so tolerant of the idea that disability means restricted life choices?
Why are bereaved families having to fight for years for independent investigations, let alone justice?
Why are the interests of private institutions being put ahead of those of vulnerable people?
And why are beautiful, amazing young lives being cut short?
The creativity, resolve and strength of the Justice for LB movement is incredible, and we must all speak up to prevent further tragedies:
• Please follow the @JusticeforLB twitter account and blog and support the campaign in any way you can.
• Consider making a donation to Inquest to enable them to continue to support families fighting for answers
• I’ve pledged my support for LB’s Bill – please consider doing the same.
“I agree with the aims of the LB Bill, to promote disabled people’s right to live in their community and to make it harder for the State to force disabled people into residential care or treatment. I will do what I can to help the ideas in the LB Bill become law.”
I’m about to get off the train. Tomorrow I’ll write about the wonderful Unity Festival, a place where difference, inclusivity and neurodiversity were celebrated, and varied needs seamlessly supported. I want to be part of a society where this is the norm and where the lives of disabled and non-disabled people are valued equally.