Category Archives: Autism

The learning disabled people locked away in lockdown

‘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.

You can read my Guardian piece here.

Learning disability in the mainstream media

Raana Salman baking. Photo: Nicola Bensley

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

Made Possible: Shaun’s story

Human rights campaigner Shaun Webster, in Made Possible, stories of success by people with learning disabilities – in their own words

A complete joy working with campaigner Shaun Webster, who describes his life in my upcoming book ‘Made Possible, stories of success by people with learning disabilities.’

Shaun, who I filmed with pre-lockdown, explains what drives him and how he defied those who told him he’d never achieve anything.

Made Possible shows how and why people’s potential should be supported, and that we all benefit when this happens. It couldn’t be a more apt book for our current times.

Pre-order Made Possible from the usual booksellers like https://amzn.to/3fMJMXh or see if your local bookstore can order it for you. For updates, follow #MadePossible and @Saba_Salman on Twitter and Instagram and the Facebook.

Changing the perception of learning disability

Raana Salman baking. Photo: Nicola Bensley

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.

As I write in a new piece for Byline Times, the latest figures from NHS England show that more than 450 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 and which is inspired by my sister, Raana, challenges stereotypes. The collection of essays does this through the stories of people whose achievements are awe-inspiring – regardless of their disability. 

To read the rest of my piece, go to Byline Times

Coronavirus impact

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.

beautiful Minds

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.”

You can read the entire piece here

MAde possible: in hardback

Book news: the hardbacks of my upcoming book, Made Possible, are now at the offices of my publisher, Unbound.

Copies will soon be in the hands of all of the great people who backed these first editions and therefore helped bring this book into the world.

The paperback’s out in May and is now available to pre-order from the usual places, like Foyles, Waterstones, Blackwells and Amazon.

In a nutshell, the book is 200 pages that challenge assumptions and it’s packed with power, joy, potential, humanity, humour and much more.

You can find out more about the background to the book on my publisher’s website and in this Guardian piece.

uniting to fight loneliness

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.

Different is good

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.

The good, the bad and the ah here we go again

You can’t rehabilitate someone when they’re locked away” Campaigner Julie Newcombe and her son Jamie, who I worked with on a story in January. Photograph: Martin Godwin/The Guardian.

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:

1. More human rights and a proper community life for people with autism and/or a learning disability.

2. More of an ‘ordinary life’ for people like my sister, Raana.

3. More professionals putting people – like Nigel Hollins – at the centre of their care.

 Sheila Hollins with her son, Nigel, who is now a Beyond Words adviser and runs one of the Surrey book clubs. Photograph: Martin Godwin/The Guardian

4. …on a practical level this means more professionals truly understanding that people and their families are usually the real experts in their own care. No lip service thanks.

5. More authentic representation of disability on stage, screen, in front of and behind the camera and in the audience.

The Peanut Butter Falcon’s sentimental approach could be construed as reinforcing stereotypes about ‘vulnerable’ people triumphing over tragedy.’ Zack Gottsagen and Shia LaBeouf in The Peanut Butter Falcon. Photograph: Seth Johnson/Signature/Kobal/Rex/Shutterstock

6. More support and social care funding for autistic people and real, honest involvement of people and families in research.

7. Less social isolation so older and learning-disabled people really know their neighbours.

8. Less (or rather zero) health inequalities for people with learning disabilities, special educational needs and profound and multiple learning disabilities.

 Erica Carlin, a woman with multiple learning difficulties, who doctors had written off. Photograph: Andy Lord

9. Less cultural and social prejudice towards BME and Asian disabled women.

10. Less assumptions that people like my sister aren’t interested in or capable of forming relationships of different kinds.

11. Less official reports that bang on about the same stuff we’ve known for years and that fail to actually make any difference.

12. Finally, ending on a positive note – here’s my awesome sister, Raana offering a glimpse into her idea of community with a short film she made with her support worker (spoiler alert: it’s not that different to anyone else’s).

  • 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.