In late July 2019, I tweeted asking families with autistic or learning disabled children to share their experience of “sparkling” actions by health and social care professionals. I was writing a book about how professionals could make a difference in the lives of children and their families, and the manuscript was woefully negative.
The tweets started appearing and the thread grew across the next few weeks. They included extraordinary examples of what I came to call “pockets of brilliance”. An administrator who included pug memes in the appointment letters for a dog-loving young patient. Professionals who were prepared to sit on the stairs so a child could stay in their bedroom during a visit. The GP who told one mother: “I don’t know very much about autism, but I promise you that I will do all I can to learn.” Another GP who rang a mother in the evening after he’d been kicked during a distressing appointment, gently asking what he could do to help. These behaviours could be badged as “reasonable adjustments”, but to give them any type of label is part of the problem. The shoehorning of human actions based on kindness, thought and sense into jargon dehumanises what should be everyday, normal conduct.
These tweets generated a visceral feeling in me, in part because of the simplicity of the actions captured. Why would you not ring someone after a particularly difficult appointment to check on them? Isn’t remembering what children like and engaging with their interests an obvious way to generate good relationships? Telling a parent their child has been a pleasure to support is commonplace, surely? And then I return, as I often do, to the way in which our beautiful son, Connor, was left to drown in an NHS hospital bath while nearby staff finished an online Tesco order. Certain people, children and adults, in our society are consistently and routinely positioned outside of “being human”, leading to an erasure of love, care and thought by social and healthcare professionals. They become disposable.
Some people kicked back on the tweet thread asking, “Why should basic decency be applauded?” These encounters are not examples of brilliance; they are examples of good practice, and shouldn’t be held up as something special. I agree. The problem is, they remain so rare that they are extraordinary. Some stories dated back years, and part of their power and significance is in how much they stand out in people’s memories.
These pockets of brilliance provided a hook of relief to write around. But there were further knocks. I contacted one mother to ask if she was happy for me to include her tweet as a “finale” to the book as it was so moving, particularly given what had happened to Connor: “A support worker on daughter’s unit has asked if she can switch her shift so she can be in the car to bring my daughter home for good on Thursday,” she had tweeted.
The mother replied that I could use it, but it wasn’t to be the high point I had hoped to finish on. She added that despite the support worker’s request, she didn’t actually turn up with her daughter. She still has no idea why.
In addition to the tweets, key, largely unknown figures emerged through my research; people who called out appalling practices, sometimes repeatedly. In the 1960s, Michael Pantelides, from Cyprus, was working as a nursing assistant at Ely hospital in Cardiff, and raised concerns about abuse. His concerns were ignored, and he eventually wrote to the News of the World, leading to the first NHS public inquiry and the setting up of the Hospital Advisory Service, a precursor of the Care Quality Commission (CQC). Wales’s first minister, Mark Drakeford, chillingly says it took “fresh eyes” to recognise the abuse.
Four decades on, Terry Bryan, a nurse at Winterbourne View, approached the BBC after witnessing horrific abuse by staff on residents at the assessment and treatment unit for people with learning disabilities and autism. He had made complaints to his employer, Castlebeck, and the regulator, the CQC, which were all ignored. In May 2011, Panorama exposed the abuse with shocking footage captured by a reporter in a few weeks of working undercover at the unit, near Bristol.
What has also become clear to me is how much the treatment of people and their families remains on a failing loop, despite extensive research, legislative and policy change to make their lives better, and potentially transformative moments like the exposure of the Winterbourne View scandal. At the heart of this loop are loving families and a diverse range of allies, surrounded by a large cast of bystanders who, instead of fresh eyes, have vision clouded by ignorance and sometimes prejudice.
To rehumanise society, we need more people with guts and integrity who are prepared to step up and call out poor practice, and to look afresh at how we could do things so much better with a focus on love and brilliance.
• Sara Ryan is an associate professor at Oxford University’s Nuffield Department of Primary Care Health Sciences and an author. Her new book is Love, Learning Disabilities and Pockets of Brilliance