Tag Archives: learning disability

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.

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

Cinema to shift attitudes

Zack Gottsagen and Shia LaBeouf in The Peanut Butter Falcon. Photograph: Seth Johnson/Signature/Kobal/Rex/Shutterstock

I just wrote a column about a critically acclaimed movie opening in UK cinemas this week, one that shines a much-needed spotlight on how learning disability is represented in film.

The Peanut Butter Falcon stars Zack Gottsagen, an actor who has Down’s syndrome. He plays a man who escapes his care home to follow his ambition of becoming a professional wrestler. The film has won universal plaudits for its feelgood factor and optimistic messages about fulfilling your dreams and not judging a book by its cover.

My own take on the film, as a sibling, is that it’s a welcome move to right some wrongs about Hollywood’s representation of disabled people. Given Hollywood’s previous offerings, such as Rain Man and Forrest Gump, featuring non-disabled actors as disabled characters, having a learning disabled actor playing a learning disabled character seems like a significant step forward. The directors, who met Gottsagen at an acting camp, were offered money to replace the actor they had shaped their film around. They refused.

There is also authenticity in scenes reflecting the restrictive nature of institutions and in the portrayal of risk-averse, overprotective carers infantalising a grown man. You can read more in my column.

The movie opens just days before Brighton’s Oska Bright, billed as “the world’s biggest learning disability film festival”. The biennial event, founded 15 years ago by learning disabled film-makers and supported by disability arts charity Carousel, has a reputation for showing radical work (it hosted the UK premiere for Sanctuary in 2017). This year, for the first time, the short films being screened will be eligible for a Bafta. Timings meant that The Peanut Butter Falcon didn’t make it into the festival, but its themes align very much with the films being shown next week.

I asked two of the festival’s leading lights – committee member Sarah Watson and programme director Matthew Hellett – their thoughts on how learning disability is portrayed on film. Here’s what they said.

Sarah Watson: “I really loved The Peanut Butter Falcon! It was so cool because even though I don’t like Shia Lebouf, he really showed he can act! I thought it was funny and heart-warming but not too heart-warming. The story was really good. I liked how the actor with Learning Disabilities shone out as a proper actor. I thought it was perfect. The music was good. The film was true quality.I wish it was longer! I would like to see what happens to them at the end, what happens to the horrible wrestler – I wanted more bad things to happen to him.

All of these films are trying to break the barriers, trying to make sure that people with Down’s syndrome and learning disabilities are treated equal – which is quite rebellious and rare.

I hope we at Oska Bright kick some ass, be quite revolutionary, show brilliant work and show that we can be as good as any film festival. We want to show more Down’s syndrome and learning disabled actors to show what we can do! We can do as good as non-learning disabled actors. We are the filmmakers and the people in the films! We actually have people with autism and learning disabilities in our films! We know what the daily challenges are of these roles in the real world!

This is my message to the film industry: loosen up and trust people. Give them support and skills and a chance! If it goes wrong, so what, at least we’re trying! Give us access! Stop sitting on the fence! Some films we’ve seen lately have challenged this, so more films like The Peanut Butter Falcon and Sanctuary please!

Also there should be more female led, more disabled led films. Give us a chance! You know you want to! We’re different and have different ideas that you might never think of! “

Matthew Hellett: “I think it’s really good that films like this are being made. Of course I think there should be more of them. It’s what I hope will happen in the future. It’s exciting that more of these films are being made, I mean it’s more than exciting. It should be happening more often. And we hope it will.

Oska Bright is bigger than ever before this year, with a bigger range of films from all over the world. Hopefully when people walk away from the festival, they’ll talk about the films and have a positive outlook. We want people to recognise the films and what they’re doing. These are big bold stories from learning disabled people.

We’re pleased to have a third of our programme as F-rated this year. We really wanted to make sure we’re giving female learning disabled filmmakers a platform to share their work. These films should be more out there. Women in film are already a minority and it’s an even smaller minority for learning disabled women.

Queer Freedom is back for a second year, which is good and exciting. I want it to get stronger. It was quite difficult to find the films, even though the screening from 2017 was our most popular screening on tour this year.

There shouldn’t be an imbalance, more films need to get made. Clearly these films are popular, so I hope they inspire people commission more work made by or featuring people with learning disabilties.  I really hope that the festival can make this happen. We are very serious about what we do, we’re not going away and we’re committed to making change.

Films like Rain Man or Forrest Gump are completely, completely wrong, they are not learning disabled people in those roles. They don’t represent the stories and the lives of learning disabled people. They shouldn’t be made at all.

Oska Bright offers real representation and a platform for people to show their work. These stories are important. We’re offering support and creative opportunities for learning disabled people to share their work. Without people that look like you on the screen, you don’t know that it’s possible for you to be there yourself. You need to be able to see yourself on the big screen. It’s starting to happen more which is great to see, films like The Peanut Butter Falcon and Sanctuary are so important.”

Read more here and find out more about Osaka Bright and The Peanut Butter Falcon

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 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.

Happy Christmas 2018

My youngest sister Raana (left) – cheers and merry Christmas and a happy new year!

Season’s greetings to everyone – this is me with my sister Raana, thanking everyone who’s collaborated on stories, projects and posts this past year – here’s to more of the same in 2019.

Big thanks also to all of you who’ve supported or helped publicise the crowdfunded book I’m editing, Made Possible, about the talents of people with learning disabilities. It’s
partly inspired by my sister, who has the learning disability fragile X syndrome, and aims to shatter the lazy stereotypes we have about learning disability.

There’s been a welcome focus in the media recently on learning disability, thanks largely to the determination of campaigning families, but there’s a huge amount left to do. People are still subjected to inequalities in health, housing, employment and attitudes, 2,350 autistic and learning disabled people are still stuck in “assessment and treatment centres” – despite the government’s long-standing promise to move them into proper housing in communities.

Here’s hoping 2019 will bring more action, instead of just more rhetoric, as I’ve written before, and the people who have to spend the festive break in inpatient care are reunited with their families soon.