Category Archives: Charity

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.

An election for all

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):

This is a really good guide on elections and voting by the self-advocacy charity My Life My Choice.

Another helpful resource here – a page of information from campaigning organisation Learning Disability England.

This is a useful guide on voting from the charity Mencap and the Electoral Commission.

There is also this resource on politics and voting from charity United Response . The charity is also creating easy read versions of the manifestos

The Green Party easy read manifesto is here

The Liberal Democrat easy read manifesto is here

The Labour Party’s accessible, easy read manifesto page is here. Labour’s disability manifesto is available here, plus an easy read version.

The Conservative Party’s accessible manifesto can be requested by calling or emailing the party via this page

Links to the general (ie not accessible) manifestos are below. I also checked how many times the parties mention autism and/or learning disability.

Green – Greens don’t mention either.

Labour –Labour mentions learning disability once, autism not at all.

Lib Dem –Lib Dems mention learning disability five times, autism twice.

Tory – Tories mention both twice.

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

As a disabled Asian woman, I’ve had to fight for my independence

 Gazala Iqbal: ‘The government needs to ask disabled people what they want.’ Photograph: Christopher Thomond/The Guardian

Gazala Iqbal, now 46, was overprotected at home and her sense of dependency was reinforced by patronising attitudes from health and social care professionals. One district nurse told Bradford born and bred Iqbal that she spoke really good English “for an Asian woman”.

Iqbal’s story is echoed in a story I’ve just written. The article is also based on new research by user-led charity Asian People’s Disability Alliance (APDA) into the barriers to independence for disabled Asian women. The report, Humare Avaaz (“our voice” in Urdu), follows 18 months of community research involving 90 women with a physical or learning disability, mental health issues, long-term condition or caring responsibility.

Ignorance of health and social care among families, APDA’s findings suggest, is compounded by professional assumptions. While the authorities are aware of the low or late uptake of services, the report states, they “appear content to presume that this is a choice made by ethnic minority communities”.

There are solutions. Bradford council is embedding a human rights approach into its social work. Over the last two years, the learning disability team has made support more accessible, encouraging engagement with the Asian community.

Read the full story in the Guardian

‘People with learning disabilities must be put 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

I just did a Guardian interview with Sheila Hollins. The crossbench peer is one of the UK’s foremost authorities on learning disability and mental health but the says her greatest achievement is founding Beyond Words, a pioneering not-for-profit organisation that produces picture books to help people with communication issues. “Beyond Words is what I feel most passionate about because it’s about transforming people’s lives,” she says.

Its origins lie in Hollins’ use of pictures to interact with her son, Nigel, who has a learning disability. “He would roar with laughter at Laurel and Hardy [silent] films but didn’t put a word together till he was eight.” When Nigel was nervous about an adventure holiday, his parents drew pictures depicting activities like abseiling: “When we put things into pictures, he felt more in control.”

Thirty years on, Beyond Words has distributed or sold 100,000 copies of its 57 titles, which cover everything from relationships to surviving abuse. Each title involves 100 learning disabled people as advisers or authors. There are 60 associated book clubs with 350-400 members.

Nigel Hollins, now 47, is a Beyond Words adviser and runs one of the Surrey book clubs. He lives independently in a flat near his family with support from a personal assistant. His mother says: “People see Nigel in the shops, cafe or train station. He has a life in the community.”

Read the full interview in the Guardian

My sister’s ordinary life

I write a lot about failures in care for learning disabled people, but I just wrote something that reflects the complete opposite – it’s about my sister Raana’s very good support, and her hopes and dreams. It’s about what’s possible if and when people get the right help in a way that suits them.

Last night, another Panorama programme reflected the reality of the crisis in social care and the human impact of years of underfunding. Writing about what’s good doesn’t make the horrific stuff any easier to bear, but it does show how little it really takes to enable people to live the life they want.

You can read the post on the Fragile X Society website.

Read the piece here: https://www.fragilex.org.uk/post/my-sister-s-ordinary-life-by-saba-salman

My sister has Fragile X syndrome. The barriers to an ordinary life are institutional

What makes an “ordinary life” for the UK’s 1.5 million learning disabled people? Having relationships, choosing where to live or when to go out? Things that most of us take for granted are often denied to people like my sister Raana, who has Fragile X syndrome, the most common inherited cause of learning disability.

With the right support and an enlightened attitude that’s mindful of people’s human rights, people with learning disabilities and autism can enjoy the things most of us take for granted. I wrote an opinion piece about this for the Guardian.

The article also describes the short film Raana made for a recent conference run by charity Stay Up Late, a ground breaking event where everyone who spoke had a learning disability or autism, and most of the 130-strong audience worked in social care.  My sister’s film shows what she can do when she has the right support, sometging that will also be reflected in my forthcoming book, Made Possible.

As Andrew Walker from Stay Up Late’s quality checking team says: “We’re the experts. We’re the people who want to live a life … we’re no different from anyone else. We should be treated the same.”

my ordinary life, A film by Raana salman

        

A five-minute film by Raana Salman

My sister Raana made this film on the theme of community – helped by her brilliant support worker Indra – for sharing at this week’s (Un)Ordinary Conference in London.

The event, held by the campaigning learning disability charity Stay Up Late, was billed as “a learning disabilities conference with a difference” because professionals from the social care sector made up much of the audience and those on the platform had a learning disability and/or autism.

The event explored learning disabled people’s views on community, relationships and employment.

I’ll write about my own thoughts later, but right now I don’t want to put my own filter on what Raana wanted to share – not least because if I did, that filter would spontaneously combust into a zillion radiant pieces of joy.

I am so incredibly proud of my creative, determined sister, a fact that will be obvious to those who’ve supported and been following the progress of the book Raana’s inspired, Made Possible.

What I will add though, for context, is that Raana has fragile x syndrome and in the past she’s found it tricky to do some of the things she does now. And while she’s done public speaking in familiar places with friends and her trusted support staff, it was a huge deal for her to travel up to London for the day and be in a place she’d never been to before with a whole new bunch of people she’d never met.

Raana didn’t fancy making a speech or taking questions, hence the film with captions.

We hope it makes you smile.

‘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