‘You don’t get kisses, Mummy, you don’t get hugs.’ Jack Cavanagh, on a beach in his younger days, has autism, a learning disability and epilepsy, and lives in secure care in south Wales (photo: Cavanagh family)
I’m in fine, strong company in the category and delighted that the Society of Editors is considering the issue of diversity in all its forms.
The articles I’ve been shortlisted for have all been published by The Guardian, and they focus on the brutal impact of Covid on disabled people and their families. The pieces show how the pandemic intensifying the huge inequality already faced by part of our population.
I’m privileged to work with people and families and report on these vital issues. I’m also grateful for a supportive, thoughtful and sensitive commissioning editor, Alison Benjamin, who commissioned me to write these articles for The Guardian’s Society pages.
In a piece for the Byline Times, I call for a more accurate reflection the lives of those with learning disabilities in society and the media, and explains how my new book of essays, written by learning disabled people, aims to change the narrative.
Say the words “learning disability” to most people and they will probably think of headlines about care scandals or welfare cuts. That’s if they think of anything at all.
The latest figures from NHS England show that 451 people who have died from the Coronavirus since 24 March were recorded as having a learning disability or autism. According to the Care Quality Commission, there has been a 175% increase in unexpected deaths among this group of people compared to last year.
Mainstream media coverage of the Coronavirus reflects a nonchalance. Give or take the odd exception, the reporting has failed to acknowledge the impact of the pandemic on the UK’s 1.5 million learning disabled people like my youngest sister Raana.
Outside of COVID-19, if learning disability issues hit the headlines, they usually reinforce stereotypes about “vulnerable people” unable to fend for themselves. And when a story makes the media, it rarely includes direct words from someone with a learning disability.
This is the reason for the book Made Possible: Stories of Success by People with Learning Disabilities. The anthology, which I edited, challenges stereotypes through the stories of people whose achievements are awe-inspiring – regardless of their disability. They describe, in their own words, what needs to happen for learning disabled people to reach their potential. The powerful first-person experiences are from a human rights campaigner, a critically acclaimed actor, a civil rights activist, a singer-songwriter, an elite swimmer, a fine artist, an award-wining filmmaker and an elected mayor.
Read the rest of the article, first published in June, here
I’m really pleased that my first piece of 2020 is for the much-needed Positive News magazine, on challenging stereotypes about neurodiversity.
It features amazing people talking about how thinking differently because of autism, dyslexia, dyspraxia and ADHD can contribute to success – and what we all miss out on by ignoring this.
The extract above features Alice Hewson, who is dyspraxic, describing the advantages of thinking differently (photograph by Owen Richards).
Regular readers will notice a link between the subject matter and my upcoming book, Made Possible
The print edition of the magazine is out now and the article will be online later this month (positive.news). Amid the current news agenda, it’s a welcome look at all things uplifting and positive.
Simon Baron-Cohen: ‘Brains come in types, and they’re all normal.’ Photograph: Graeme Robertson/The Guardian
I recently interviewed Simon Baron-Cohen, a world-leading expert on autism, for the Guardian.
His latest research reflects the huge gulf between advancements in awareness and research and real, practical improvements to people’s lives.
Such findings from the Cambridge professor and director of the university’s influential Autism Research Centre add more weight to existing evidence about the significant challenges facing autistic people. Diagnosis can take years; children face cuts to special educational needs provision; just 16% of autistic people had jobs in 2016 (compared with 80% of non-autistic people); and they are among those locked up in secure hospital-style units instead of living in communities. The Autism Act a decade ago obliged the government to create a strategy to improve support, but legislation has fallen short of promises.
Baron-Cohen hopes his centre’s recent findings will encourage better practical help (a lifelong support worker, for example) “so there’s a pathway from discovery in the lab through to changing people’s lives”. This is crucial because academics are often cricitised for failing to translate knowledge into practice. A 2013 report by the charity Research Autism questioned why studies to look at effective services or to fully involve autistic people. Baron-Cohen says: “The old style of doing research was, without [us] realising it, arrogant, in that the scientists thought up the questions and then did it. The new way is to involve people from the outset… to co-design the studies and check the relevance and wording.”
I also spoke to Baron-Cohen about criticism of and controversy about some of his theories. Notably, his “extreme male brain’ concept, outlined in his provocative book, The Essential Difference. This describes men’s brains being wired for systemising and women’s for empathising. This led to criticisms of “neurosexism” and gender stereotyping which could risk misdiagnosis or under-diagnosis of autistic women.
His theories have also been
challenged by autistic people who argue that they fuel the myth that they cannot
empathise. Autistic academic Damian Milton, a
lecturer at the Tizard Centre, University of Kent, says: “Simon’s a nice guy and
knowledgeable in a lot of areas, but the empathising and sympathising theory
suggests a lack of cognitive empathy, which many people in the autistic
community disagree with.” Milton’s double
empathy theory is a critique of Baron-Cohen’s, describing a mutual empathy problem between autistic and
non-autistic people.
In response, Baron-Cohen says that with empathy “we need to make sure it’s [moving] two ways”. He stresses that while autistic people may struggle to imagine others’ emotions, they feel emotion if others are upset (the distinction between cognitive and affective empathy).
He says of criticism: “Sometimes I have to spend a lot of time explaining what it is I’m not saying…people just take the headline and think I’m saying autistic people are macho and aggressive.” Baron-Cohen stresses that “equality between the sexes is very important”, adding that his research explores groups of males and females “on average”, adding “this is not about individuals”.
