Category Archives: Social isolation

LIFE IN lockdown limbo

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.

Read the rest of my piece in the Independent

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.

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.

‘It’s like the light’s come back on’: connecting people in care homes with their communities

Paul Williams, former champion runner, is now a fledgling public speaker thanks to a new project connecting people who use support services with their local communities (pic: NDTi)

Paul Williams has a learning disability and was once an athlete. Years in institutional care meant he didn’t mention his talent. With the Time to Connect project, which I wrote about in the Guardian today, he dug out his medals, has done a local talk and is now writing his life story.

Williams, his care organisation and volunteer are part of the Time to Connect community inclusion project. This encourages stronger links between people using care services and their neighbourhoods, and ensures they become more active citizens. Time To Connect is a partnership between social inclusion charity NDTi(National Development Team for Inclusion) and Timebanking UK, the national charity that helps people to share time and skills.

So far, Time to Connect has involved 265 people: 92 care staff, 102 older people, 39 learning disabled people, 10 people with mental health support needs and 22 time bank members. An interim reportdescribes positive outcomes for all participants: “The evaluation found numerous examples of increased confidence and motivation among care staff as well as changes to attitudes and behaviour. This is in turn leading to increased opportunities for people to connect with their communities.”

Time to Connect adds value to care work because support staff get a greater glimpse into people’s lives and characters, rather than focusing simply on their physical needs. Clive Brown, Paul’s support worker, says: “It makes the job more rewarding and it improves my relationship with the people I’m working with. It just makes me smile a little more.”

Read the full piece on the Guardian website