Tag Archives: equality

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

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.

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

erica is alive today thanks to a specialist learning disability doctor

 Erica Carlin, a woman with multiple learning difficulties, who doctors had written off. Photograph: Andy Lord

It’s not all about Boris Johnson – the UK’s first doctor specialising in profound and multiple learning disabilities will start work in a groundbreaking pilot later this year, as I report in today’s Guardian.

I spoke to Erica’s family, who told me her life was saved after a chance intervention from a specialist “intellectual disability” doctor who had trained abroad.

Erica’s experience has led to a pioneering project in her hometown of Hull in which a new specialist will be recruited by the local clinical commissioning group later this year. And campaigners say Erica’s story proves the need for a national network of similar specialists to help reduce the health inequalities experienced by learning disabled people.

An expert group, convened by former health minister and Liberal Democrat MP Norman Lamb, is researching this idea right now.

The group’s work is timely because of a growing focus on the entrenched health inequalities faced by learning disabled people. Autism and learning disability are priorities in the NHS long-term plan, and a recent NHS-commissioned review of mortality rates shows learning disabled people die earlier and are more likely to die in hospital than the general population. Recent inquests into the deaths of people including Richard HandleyJoe Ulleri and Oliver McGowan reflect the inequality.

Research shows that GPs lack confidence with learning-disabled patients and that most get less than a day of training. Learning disability nurses support appropriate treatment and care plans, but figures from NHS Digital show that the number of learning disability nurses has fallen from 5,368 to 3,247 – a staggering 40% – between May 2010 and April 2018.

And I love the photo of Erica (by Andy Lord) and the way it features so prominently both online and in the print edition.

You can read the full report here.

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.

What would a truly accessible city look like?

Sweetwater Spectrum, austim-friendly housing in Sonoma, California (pic: Leddy Maytum Stacy Architects)

By 2050, an estimated 940 million disabled people will be living in cities, lending an urgency to the UN’s declaration that poor accessibility “presents a major challenge”.

The Convention on the Rights of Persons with Disabilities and laws like the Americans with Disabilities Act, the UK’s Equality Act or Australia’s Disability Discrimination Act, aim to boost people’s rights and access. Yet the reality on the ground can be very different, as Guardian Cities readers recently reported when sharing their challenges in cities around the world.

Barriers for physically disabled people range from blocked wheelchair ramps to buildings without lifts. The cluttered metropolitan environment, meanwhile, can be a sensory minefield for learning disabled or autistic people.

Cities benefits from accessibility; one World Health Organisation study described how people are less likely to socialise or work without accessible transport. Cities also miss out on economic gains; in the UK the “purple pound” is worth £212bn , and the accessible tourism market for disabled visitors is worth £12bn.

My Guardian report today looks at some of the most innovative city-based developments in the UK, Europe, Asia, America and Australia. These include skyscrapers built using universal design principles to the retrofitting of rails, ramps and lifts in transport services or digital trailblazers that help disabled people navigate their city.

For example, mapping apps make navigating cities a doddle for most people – but their lack of detail on ramps and dropped kerbs mean they don’t always work well for people with a physical disability. The University of Washington’s Taskar Center for Accessible Technology has a solution: map-based app AccessMap, allowing pedestrians with limited mobility to plan accessible routes.

Wheelchair user John Morris, who runs advice site Wheelchair Travel, says: “Seattle’s geography, with changes in elevation, sidewalk and street grade on a block-by-block basis, often make it difficult to navigate in a wheelchair. AccessMap combines grade measurements with information on construction-related street closures and the condition of sidewalks to plot the most accessible course, pursuant to the user’s needs. I would like to see AccessMap included as part of a holistic accessible route planner that includes the city’s public transportation services in building the most effective journey. Pairing AccessMap with the city’s route planner tool or with transit directions from Google Maps would make getting around Seattle easier for people with disabilities.”

Steve Lewis, a 69-year-old manual wheelchair-user who has helped co-design the Seattle technology, adds: “I spend a lot of time in downtown Seattle and am well aware of what a barrier the hills are to wheelchair travel. I have learned from experience how to navigate the downtown corridor. The best routes for someone in a wheelchair will take advantage of elevators in buildings entering on one street and exiting several stories higher on the adjacent street. AccessMap is an effort to automate and make accessible the knowledge I have acquired through experience. It currently shows graphically the steepness of the terrain. The Taskar Centre is involved in a major effort to automatically display the best routes for wheelchair users with knowledge of elevators and mass transit including the hours they are available.”

Through its related OpenSidewalks project, the Taskar Centre is developing a system to crowdsource extra information like pavement width, or the location of handrails. Nick Bolten, AccessMap and OpenSidewalks project technical lead, says: “AccessMap tackles a neglected problem: how can you get around our pedestrian spaces, especially if you’re in a wheelchair? AccessMap lets users answer this question for themselves, and OpenSidewalks will help add the information they need.”

In another US-based project, this time in Sonoma, California, a $6.8m supported-housing project, Sweetwater Spectrum, is a pioneering example of autism-friendly design. Autistic people can be hypersensitive to sound, light and movement, and become overwhelmed by noisy, cluttered or crowded spaces. However, the scheme is designed according to autism-specific principles recommended by Arizona State University. The complex, which opened in 2013, includes four 4-bed homes for 16 young adults, a community centre, therapy pools and an urban farm – all designed by Leddy Maytum Stacy Architects.

Noise is minimum thanks to quiet heating and ventilation systems and thoughtful design – like locating the laundry room away from the bedrooms. Fittings and décor reduce sensory stimulation and clutter, with muted colours, neutral tones and recessed or natural light used rather than bright lighting. Marsha Maytum, a founding principal at Leddy Maytum Stacy, says the design “integrates autism-specific design, universal design and sustainable design strategies to create an environment of calm and clarity that connects to nature and welcomes people of all abilities”.

And there’s another great project from Leddy Maytum Stacy in nearby Berkeley, the Ed Roberts Campus, “a national and international model dedicated to disability rights and universal access”. The fully accessible building, named after the pioneering disability rights activist Ed Roberts, is home to seven disability charities, a conference, exhibition and fitness spaces, plus a creche and cafe. Features include a central ramp winding up to the second floor, wide corridors and hands–free sensors and timers to control lighting.

Ed Roberts Campus – a fully accessible building iN Berkeley (pic: Leddy Maytum Stacy Architects)

No city is wholly accessible and inclusive, but there are groundbreaking examples leading the way – and we just need more of them.

Read the full piece in the Guardian here.