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.
“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.”
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.
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.
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.”
Lizzie wasn’t expected to live beyond her third birthday, according to doctors. Today she’s a successful singer-songwriter, making history as the first solo artist with a learning disability to release an album of original songs to the public.
Lizzie’s talent was spotted at an open mic night run by arts charity Heart n Soul, where she’s now a key artist.
‘Made Possible’ is edited by Saba Salman and published by Unbound. Available from the usual booksellers like https://amzn.to/3fMJMXh
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):
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
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.”
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.
Nice way to start off the first full week of the new year – the NHS published its long term plan today.
Depending on what you read or watch, it’s either unworkable or it could save half a million lives.
As for what it offers people with learning disabilities and/or autism – areas which the NHS proudly announced a while ago would be clinical priorities – it’s all a bit meh.
Today’s big reveal puts the long into long term.
The plan repeats longstanding aims to get autistic and learning disabled people out of long term hospital care and into proper communities – it promises a new target of 50% reduction in inpatient care by 2023/24. That’ll be 13 years since the Winterbourne View scandal where inpatients with learning disabilities were abused by care staff.
In the meantime, 2,350 people are currently languishing in hospital-style assessment and treatment units like Winterbourne View. This is just another long-term target to add to those that have already been and gone..
There’s another long term target too – for every million adults, only up to 30 people with a learning disability or autism will be in inpatient units (the equivalent number for children and young people is 12-15).
But why these numbers? Is 30 per million what equality looks like?
Then there’s a very clunky bit that’s made my head hurt:
“Since 2015, the number of people in inpatient care has reduced by almost a fifth and around 635 people who had been in hospital for over five years were supported to move to the community. However the welcome focus on doing so has also led to greater identification of individuals receiving inpatient care with a learning disability and/or autism diagnosis, so increasing the baseline against which reductions are tracked.”
This seems to be blaming the slow progress on moving people out of hospitals on the fact the NHS has realised that there are more people living in these places in the first place.