In late July 2019, Sara Ryan tweeted asking families with autistic or learning disabled children to share their experience of “sparkling” actions by health and social care professionals. She was writing a book about how professionals could make a difference in the lives of children and their families.
"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?"
Sara's own 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."
What has become clear to Sara 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."
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Source: The Guardian, 27 October 2020
Sara Ryan's book: Love, learning disabilities and pockets of brilliance: How practitioners can make a difference to the lives of children, families and adults