One in four adults in the U.S. are living with a disability, but you wouldn't know it given the lack of representation in media, Hollywood, and the workforce. We're shedding light on the real stories — not the caricatures — of this dynamic and vibrant community of individuals. Read more stories from our Voices of Disability series.
The first time viewers meet single mom Rosie Lyons (Ruth Madeley) in the HBO and BBC mini-series Years and Years, she’s just gone into labor with her second son and is figuring out where to drop off her eldest. As the youngest of the four Lyons siblings, Rosie isn’t known for planning ahead. But she’s buoyant, funny, and kind — an ever-positive presence in a show that often veers into devastating territory.
“There’s so much you can say about her,” Madeley says about her character Rosie in an interview with Refinery29. “I’d imagine that the fact that she has spina bifida is down the list of interesting things.”
Like Madeley, Rosie was born with spina bifida, a condition that occurs when the spine and spinal cord don't develop properly in the womb. Rosie requires a wheelchair to get around. Originally, the character Rosie wasn’t written as a wheelchair user, but after Madeley’s audition, it was clear she was Rosie. So, Years and Years creator Russell T. Davies worked with Madeley to shape Rosie’s character around Madeley’s own disability.
Rosie rarely addresses her disability — at this point, it’s an unremarkable part of her life — but when she does, she’s unwaveringly proud. “I think I’m brilliant. I don’t need fixing,” Rosie says in episode 2, when talking about new technology that can fix spina bifida. The disability has shaped who she is, but it isn’t all that she is.
Through Davies and Madeley’s collaboration, what results is a nuanced depiction of disability rarely seen on screen. For example, while Rosie generally uses a wheelchair, she can walk when necessary — challenging viewers’ perception of wheelchair users when she flees the house on foot during an emergency.
Simply put, audiences simply aren’t used to seeing disability depicted on screen at all, let alone a depiction like Rosie’s in Years and Years. Of the top 100 films from 2017, only 2.5% of the characters had disabilities — even though 20% of Americans live with disabilities. Hollywood is becoming more diverse in all ways but this, and Madeley feels called to help fix it.
“I’m a firm believer that I have a job to do. I have to make this industry more accessible and real for people with disabilities,” Madeley says.
We spoke to Madeley about Years and Years, the stereotype of able-bodied actors getting Oscars for playing characters with disabilities, and why the entertainment industry has a diversity blindspot.
Refinery29: How would you say Years and Years’ depiction of disability compares with other depictions in pop culture? Did Years and Years get it right?
“Years and Years got it so right, with such a feisty character and such an important storyline that wasn’t centered around her disability. You almost forget that she has any type of disability at all. As somebody who has a disability and is a wheelchair user, it was really important for me to be able to portray it the way that I’d want to see it when I was growing up. I’ve had such wonderful feedback from so many people saying, ‘I’ve waited so long to see a character who was just like me on television.’ For me, that’s a big part of my drive. I feel really privileged to be in a position where hopefully I can make those changes.”
Russell T. Davies’ shows are universally diverse, but casually so — they show all of humanity without making a big deal of it.
“It really is that easy to do. It’s not rocket science. These people are a reflection of who we are as a society. It makes sense for them all to be seen on TV without it being a thing, really.”
Obviously the reception to Rosie is incredible, both from people who have disabilities and those who don’t. Why is it important for us to see actual disability on screen?
“The only way that stories become more believable is if you reflect what people see every day. People with disabilities are part of that. Back in the day, they weren’t treated equally; they weren’t treated the same. There’s no excuse for that now. We’re way past that. It’s 2019. There’s no excuse for any kind of discrimination, at all.”
How did you come to acting?
“I’ve had a really backward journey into this industry. I didn’t start off as an actor at all. I did scriptwriting at university; I always thought that would be my route into the industry. Fate had different ideas. A producer I worked with a few years ago needed a wheelchair user for a program. I thought, I might as well go and see what it’s about. I completely got the bug. I did a bit of work in between jobs just to fill in. Then I got my first lead four years ago. It went on to do so well. I knew this is what I was meant to do.”
You took a winding path to acting. How can the pipeline itself be fixed?
“There’s more that could be done before the casting process. Working with producers and writers who want to be inclusive. Acting schools, drama schools, and stage schools all need to become more inclusive and accessible for people with disabilities. There’s a whole road that leads to getting into the room to be cast in something. I don’t believe enough is being done before the casting process.”
What’s the state of inclusion on screen as it stands today?
“I’m a firm believer that you have to celebrate every victory. We have come a long way, we really have. But work needs to be done to make Hollywood more inclusive. Disability should be a part of every conversation you have about diversity. I don't believe that anything is done out of malice or cruelty. Maybe [people are] a little bit scared about the whole disability conversation because the spectrum is huge. That can be quite challenging for people if they don’t know how to do it right. I’m going to be in a Hollywood movie one day, and I’m going to show them how it’s done.”
"Disability should be a part of every conversation you have about diversity."
What are some steps that could be taken to make entertainment more inclusive?
“I don’t think we’re at a point where able-bodied people should be playing disabled roles. There is disabled talent out there. I understand there isn’t as much, because it’s not been as accessible in the past for people to come into this industry. But there’s only so long you can use this excuse. If you’re going to use an able-bodied person to tell a disabled story, you have to have a damn good reason why, and I can’t think of one damn good reason why.”
At this point, these portrayals are still being rewarded. I think 59 people have been nominated for Oscars for playing disabled roles.
“Exactly. No more. This cannot keep happening. It just can’t. The thing is, these stories clearly need to be told. There is no actor who can portray those stories better than someone who’s living it. It’s impossible. Until actors with disabilities are seen for roles that don't center around disability — until that's just the norm, where everybody is seen for everything — these conversations will just keep happening.”
What’s your dream role?
“If I could be in The Avengers — anything like that, where a kid with disabilities could watch and see themselves represented. To have a Marvel character who uses a wheelchair who is a superhero? That would be groundbreaking for every single kid out there who feels like they’re not represented, and who feels like they don't have those superpowers. If kids with disabilities can’t even be represented in a fantasy world, then what the hell?”
Edited by Kelly Dawson, a disability advocate who was born with cerebral palsy and has a master's degree in media communications.