Page 16 - Community Living Magazine 34-2

in conversation ‘
‘I escaped from hospital’ druggings, seclusion and long-term

segregation, then overload again.
In her book, Quinn graphically describes
how any action on her part that was
perceived as non-compliant or aggressive
Seán Kelly talks to Alexis Quinn, author of Unbroken, about her would cause noisy alarms to be set off and
determined spirit and extraordinary life – including a daring six or more staff members gathering to
escape from a UK institution to friends in West Africa prepare to restrain her.
As an autistic person, the chaos and
sensory overload was the exact opposite
of what she really needed. Feeling that
lexis Quinn is an autistic woman the endless trauma cycle meant she
who escaped the British mental would never leave, she finally took
Ahealth system. This is no metaphor: matters into her own hands.
she literally escaped.
On a sunny Monday morning in May Lagos magic
2016, Quinn walked from the garden of In Lagos, she stayed with a friend until she
the mental health facility where she was could find herself a home and a job and
detained, picked up the bag of clothes she her parents could bring her young
had previously hidden by the bins, and daughter out to join her (which they did
climbed into the car of two friends who six weeks later).
drove her straight to Dover. As soon as she arrived in Lagos, she felt
From Dover they went to Paris where better “as if by magic. Except it wasn’t
she caught a flight to Dubai then a further magic at all. It was common sense.”
flight to Lagos in Nigeria. Once in Nigeria, She created her own personalised care
Quinn set about rebuilding her life, far out plan to meet her needs using routine and
of the reach of the UK’s Mental Health Act. structure. The trauma, needless
Quinn has written a book, Unbroken, interventions and detention ended.
about her experiences and, when we Reflecting on the treatment of those
spoke recently, was happy to tell me what Alexis Quinn and the National Autistic Society with autism and/or learning disabilities,
happened in detail. delivered a 20,000-signature petition to prime she says we all need “to stop confusing
Things first went wrong for Quinn as a minister Boris Johnson last year calling for an trauma and difference for madness”.
young adult when her brother died end to institutional abuse In a recently published open letter to
unexpectedly. This highly distressing event the Care Quality Commission (CQC),
happened around the same time as her Asking for help: a major mistake Quinn castigates the organisation for
daughter was born. As if that was not She decided to go to her GP for help: “And “bollox reporting” including promoting
enough, Quinn had also changed jobs and that was the biggest mistake of my life.” the “dangerous lie” that the system is
returned to the UK after living in Asia. Quinn says that she could have used committed to community-based
“It was far too much change for some help – “maybe £5,000 worth of psychiatric care.
somebody who was autistic,” she reflects. psychology, some occupational therapy, Instead, she wrote, “these hospitals
In order to cope, she turned to her some speech and language therapy”. exist and house people against all
usual strategies – lots of physical exercise, Instead, she went into an inpatient unit. government guidance, human rights law
especially swimming (in her youth she “As soon as the door closed, everything and medical recommendations. They
was on the English team) and focusing was so overwhelming. My routine was unnecessarily restrain, forcibly medicate
intensely on her special interests. gone, my familiarity was gone. I wanted to and deprive people of their most basic
The problem was that after her brother leave. They said no.” liberties all the time and not only in
died, Quinn became extremely interested This was the beginning of three and a ‘extreme’ cases.”
in death. Initially, she researched how the half years in 12 different hospitals and Quinn suggests that the CQC views the
body decays after death but then she institutions, which Quinn estimates cost scandals at Winterbourne View, Whorlton
moved on to subjects such as the most the NHS about £2.5 million: “All that Hall and Yew Trees hospital as rarities
painless method of suicide. She could not money wasted on traumatising me and when they are simply examples of a
understand why her focus and passion, trying to fix something that a) isn’t broken prison-like system: “I don’t think the CQC
which had always won her praise in the and b) can’t be treated.” are turning a blind eye – they just don’t
past, was now causing “deep worry and Quinn tried to free herself from know what to look for.”
deep scrutiny”. entanglement in what she calls the However, she says they are improving:
“Velcro system”. She became calmly “Just this month the CQC have reported
and rationally convinced that, as she ‘Inadequate’ ratings rising from 5% to 22%
“As soon as the door was autistic, it was the environments for independent autism and learning
closed, everything was so in each of these noisy, chaotic and disability services. This is great news.”
scary institutions that were causing
Quinn has done a lot of work for the
overwhelming. My routine was her challenging behaviour and CQC on their expert advisory panels, but
gone, my familiarity was gone” autistic meltdowns. she continues to challenge them: “I am not
going to sit there and say it is all fine. It’s
She entered “a trauma cycle” –
overload, meltdown, restraint, forced not fine. I am happy to be a conscience.”
16 Vol 34 No 2 | Winter 2021 Community Living www.cl-initiatives.co.uk