‘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.
I wrote a personal piece for the Guardian about how Covid-19 is impacting disabled people and families.
Coronavirus has thrust us all into a new normal. Life has come to feel the same yet different. However, for some communities Covid has undermined their very ethos.
My youngest sister Raana, who has a learning disability, has lived in a supported living community in Hampshire for 10 years. We chose the charity that runs her home for its values. It creates a sense of belonging and purpose, focuses on abilities and is governed by the belief that everyone has the right to be involved in society.
Covid-19 means that not only are the guiding principles of the charity are at risk, but my sister’s independence is being undermined.
You can read the piece on the Guardian website here.
Raana (left) with me at her 30th birthday last year. She lives in supported living in Hampshire.
Most of us are now emerging from lockdown and acclimatising to the “new normal” we find ourselves living in. From this week, we can go to a beauty salon or gym, and care homes visits are on the horizon.
But my learning disabled sister, Raana, is untouched by the easing of restrictions. Raana lives in supported living, in a shared house in Hampshire with help from care staff during the day. Thanks to a lack of any government guidance on coronavirus for supported living, she’s living in a parallel universe.
Without clear rules on what she should or should not be doing, her carers are – understandably – keeping tight restrictions on her movements. Raana is in lockdown limbo.
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
Lizzie wasn’t expected to live beyond her third birthday, according to doctors. Today she’s a successful singer-songwriter, making history as the first solo artist with a learning disability to release an album of original songs to the public.
Lizzie’s talent was spotted at an open mic night run by arts charity Heart n Soul, where she’s now a key artist.
‘Made Possible’ is edited by Saba Salman and published by Unbound. Available from the usual booksellers like https://amzn.to/3fMJMXh
You can read more about the reasons for the book in this Byline Times piece.
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.
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 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.
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”.
