‘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.
‘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.
After a year in secure care 105 miles from home, Jack Cavanagh, 17, who has autism, a learning disability and epilepsy, desperately misses his family. They used to see him every weekend, but with Covid restrictions have been unable to visit. As a result, they say, Jack has become more anxious and isolated and recently begged staff to “be” his mum or dad.
I spoke to several families including Jack’s, about how the use of restraint and isolation has increased during Covid. This group of people have been overlooked during the pandemic despite the fact they are more at risk thanks to the virus.
Raana, left, on her 30th birthday in June last year. My family doesn’t know if we can celebrate with her this year.
My sister has a learning disability and I can’t visit her because of coronavirus.
Coronavirus has made enforced separation a universal experience, but there are additional and far-reaching challenges for learning disabled people and their families. I cannot visit my youngest sister, Raana, who has fragile X syndrome and lives in supported housing in Hampshire. My family has no idea when we will next see her.
Social distancing, self-isolation and a lockdown for the over-70s will have a seismic impact on Raana (our parents are in their 70s, our father has a lung condition). My sister’s social contact is now limited to support workers paid to care for her and her learning disabled housemates. She uses text messaging but dislikes phone calls and writing letters.
Raana thrives on consistency and routine, including dance classes, baking workshops and weekly shopping. Yet coronavirus means services are closing and people’s movements are restricted. Online equivalents are not the same and do not always appeal if you have communication difficulties. What will happen if her trusted support staff fall ill or she has to self-isolate? What if she needs help with personal care?
The 1.5 million learning disabled people in the UK are already among society’s most segregated people. Communities must not forget them, as I write in this Guardian piece.
Featured image: Alice Hewson, youth worker and journalist, who is dyspraxic. Credit: Owen Richards for Positive News
Rather than simply accepting people with neurodiverse conditions like autism or dyslexia, what if we recognised their hidden talents?
Positive News has just posted my article about this issue. I heard from four neurodiverse on how the way their brains work has been key to their success.
As Alice, pictured above, says: “I’ve encountered difficulties that other people don’t have to deal with, and that’s made me incredibly caring. I can put myself in someone else’s situation. I respond in a very different way to people who aren’t neurodiverse.”
A new project unites people at opposite ends of the age spectrum – individuals who are among the most excluded groups in society (photo: Anchor Hanover).
Society is in the grip of a loneliness epidemic. Headlines regularly warn about the scale of this modern scourge, from describing how social isolation increases our risk of death, to lamenting Britain’s status as one of the most age-segregated countries in the world.
What command less column inches are the small-scale solutions. There is little consideration of how hyper-local schemes – when funded, publicised and replicated nationally – could tackle loneliness and shift perceptions about the most isolated people in the country.
I’ve just written about a new project that does just this, for Byline Times. Older people at The Beeches in Leatherhead, Surrey, a home run by housing and care charity Anchor, and pupils from Woodlands School meet weekly for singing sessions run by Intergenerational Music Making (IMM), a local community interest company.
Not only are the singers at opposing ends of the age spectrum (the youngest is five, the oldest is 90), they are from two of society’s most excluded groups: the adults have dementia or a disability or depression; the pupils have severe learning difficulties, complex needs or autism.
Uniting two such disparate groups for an hour a week at the care home has had astonishing results.
It’s a small, simple yet strong solution to the society’s most pressing issue – division. You can read the whole piece 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.
I’m ending 2019 by looking back at some of the issues I’ve written about this year.
Generally, I’ve covered the good stuff we need more of and the bad stuff we definitely need less of.
Thanks to everyone I’ve worked with (quoted and not) about human rights, disability, learning disability, social care, equality, diversity and campaigning.
So here’s what we need more of and less of in 2020 and beyond, based on what I’ve written about:
This post is based on a Twitter thread and reflects some of the issues that feature in my book, Made Possible, which is being published on 28 May 2020.
A million learning disabled people are eligible to vote in the election on December 12, including my youngest sister, Raana.
But despite better awareness in recent years about accessible polling stations, easy read information and the universal right to vote, the Electoral Commission estimates that one in four learning disabled people aren’t registered to vote.
I’ve been gathering some information for my sister which I thought I’d share on this page (and I’ll update it where relevant):
Granted, this is a crude litmus test because other policy areas (like health, social care, education and human rights) clearly impact on the lives of autistic and learning disabled people. Still, I can’t help but hear the words of campaigner Gary Bourlet, from a few years ago, ringing in my ears: “Why is it OK for politicians to ignore people with learning disabilities?”
This post was updated on Tuesday 3 December to include Labour’s disability manifesto and a new link to request the Conservatives’ accessible manifestos
Zack Gottsagen and Shia LaBeouf in The Peanut Butter Falcon. Photograph: Seth Johnson/Signature/Kobal/Rex/Shutterstock
I just wrote a column about a critically acclaimed movie opening in UK cinemas this week, one that shines a much-needed spotlight on how learning disability is represented in film.
The Peanut Butter Falcon stars Zack Gottsagen, an actor who has Down’s syndrome. He plays a man who escapes his care home to follow his ambition of becoming a professional wrestler. The film has won universal plaudits for its feelgood factor and optimistic messages about fulfilling your dreams and not judging a book by its cover.
My own take on the film, as a sibling, is that it’s a welcome move to right some wrongs about Hollywood’s representation of disabled people. Given Hollywood’s previous offerings, such as Rain Man and Forrest Gump, featuring non-disabled actors as disabled characters, having a learning disabled actor playing a learning disabled character seems like a significant step forward. The directors, who met Gottsagen at an acting camp, were offered money to replace the actor they had shaped their film around. They refused.
There is also authenticity in scenes reflecting the restrictive nature of institutions and in the portrayal of risk-averse, overprotective carers infantalising a grown man. You can read more in my column.
The movie opens just days before Brighton’s Oska Bright, billed as “the world’s biggest learning disability film festival”. The biennial event, founded 15 years ago by learning disabled film-makers and supported by disability arts charity Carousel, has a reputation for showing radical work (it hosted the UK premiere for Sanctuary in 2017). This year, for the first time, the short films being screened will be eligible for a Bafta. Timings meant that The Peanut Butter Falcon didn’t make it into the festival, but its themes align very much with the films being shown next week.
I asked two of the festival’s leading lights – committee member Sarah Watson and programme director Matthew Hellett – their thoughts on how learning disability is portrayed on film. Here’s what they said.
Sarah Watson: “I really loved The Peanut Butter Falcon! It was so cool because even though I don’t like Shia Lebouf, he really showed he can act! I thought it was funny and heart-warming but not too heart-warming. The story was really good. I liked how the actor with Learning Disabilities shone out as a proper actor. I thought it was perfect. The music was good. The film was true quality.I wish it was longer! I would like to see what happens to them at the end, what happens to the horrible wrestler – I wanted more bad things to happen to him.
All of these films are trying to break the barriers, trying to make sure that people with Down’s syndrome and learning disabilities are treated equal – which is quite rebellious and rare.
I hope we at Oska Bright kick some ass, be quite revolutionary, show brilliant work and show that we can be as good as any film festival. We want to show more Down’s syndrome and learning disabled actors to show what we can do! We can do as good as non-learning disabled actors. We are the filmmakers and the people in the films! We actually have people with autism and learning disabilities in our films! We know what the daily challenges are of these roles in the real world!
This is my message to the film industry: loosen up and trust people. Give them support and skills and a chance! If it goes wrong, so what, at least we’re trying! Give us access! Stop sitting on the fence! Some films we’ve seen lately have challenged this, so more films like The Peanut Butter Falcon and Sanctuary please!
Also there should be more female led, more disabled led films. Give us a chance! You know you want to! We’re different and have different ideas that you might never think of! “
Matthew Hellett: “I think it’s really good that films like this are being made. Of course I think there should be more of them. It’s what I hope will happen in the future. It’s exciting that more of these films are being made, I mean it’s more than exciting. It should be happening more often. And we hope it will.
Oska Bright is bigger than ever before this year, with a bigger range of films from all over the world. Hopefully when people walk away from the festival, they’ll talk about the films and have a positive outlook. We want people to recognise the films and what they’re doing. These are big bold stories from learning disabled people.
We’re pleased to have
a third of our programme as F-rated this year. We really wanted to make sure
we’re giving female learning disabled filmmakers a platform to share their
work. These films should be more out there. Women in film are already a
minority and it’s an even smaller minority for learning disabled women.
Queer Freedom is back for a second year, which is good and exciting. I want it to get stronger. It was quite difficult to find the films, even though the screening from 2017 was our most popular screening on tour this year.
There shouldn’t be an
imbalance, more films need to get made. Clearly these films are popular, so I
hope they inspire people commission more work made by or featuring people with
learning disabilties. I really hope that
the festival can make this happen. We are very serious about what we do, we’re
not going away and we’re committed to making change.
Films like Rain Man or Forrest Gump are completely, completely wrong, they are not learning disabled people in those roles. They don’t represent the stories and the lives of learning disabled people. They shouldn’t be made at all.
Oska Bright offers real representation and a platform for people to show their work. These stories are important. We’re offering support and creative opportunities for learning disabled people to share their work. Without people that look like you on the screen, you don’t know that it’s possible for you to be there yourself. You need to be able to see yourself on the big screen. It’s starting to happen more which is great to see, films like The Peanut Butter Falcon and Sanctuary are so important.”
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”.
