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.
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.”
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.