Category Archives: Health

Coronavirus restrictions have robbed disabled people of their independence

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.

The disability employment gap

“Not everyone with a learning disability wants to work in a supermarket, but jobs for learning-disabled people aren’t ever talked about in terms of professions. If they were, it could change how everyone sees us.”

Veteran campaigner Gary Bourlet, co-founder of Learning Disability England, says people should have not just a job but also a career. This, as he argues in my book Made Possible, stories of success by people with learning disabilities, would have a dramatic impact on public attitudes.

Meanwhile, as a young man, Michael Edwards quit the council-run day centre he attended because he was frustrated with the menial and mind-numbingly dull “work” he was given to do. The final straw was when Edwards discovered the centre staff had been mixing up the plastic components he had spent an entire morning sorting into boxes, just so he would have a job to do in the afternoon.

I wrote for Learning Disability Today about why learning disabled people have the right to meaningful paid work as much as anyone else.

These issues are even more pressing issue now that COVID-19 has intensified the inequalities faced by learning disabled people in everything from health and wellbeing to employment. We already know that successive welfare-to-work schemes have not really helped people with learning disabilities or been specifically aimed at them.

Read the rest of the piece here and find out more about my book here.

Fighting for everyone

Cllr Gavin Harding is a trailblazer who has devoted his life to improving the rights of learning disabled people, and their care. He has achieved this through his work for NHS England, his contributions to Government plans and programmes, and as a local politician.

Gavin Harding MBE, local politician and contributor to Made Possible: stories of success by people with learning disabilities – in their own words

The MJ magazine just published an interview with Gavin Harding about his life, work and his words in my book Made Possible

Journalist Ann McGuaran writes of Gavin: “In 2011 he became the first person with a learning disability to be elected as a Labour councillor in his home town of Selby in Yorkshire. Four years later he became the UK’s first mayor with learning disabilities, and in that same year he was awarded an MBE for his work for services to people with learning disabilities.

“He helped the Government draw up a three-year plan on learning disability, Valuing People Now, in 2009. In 2014 he became co-chair of the Transforming Care programme to improve standards of care for people with learning disabilities.

“Cllr Harding is one of the people featured in a new book highlighting stories of success by people with learning disabilities – in their own words. In Made Possible, he is one of eight individuals who present their authentic experiences, and show how people can make invaluable contributions to society when their potential is acknowledged and supported by those around them. Made Possible is edited by social affairs journalist Saba Salman, who is a trustee of the charity Sibs, and has a younger sister with a learning disability.”

Read the rest of the piece in The MJ here

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.

simon baron-cohen interview

 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 provisionjust 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”.

You can read the piece in the Guardian here.