Defiant Lives : The rise and triumph of the disability rights movement
Disability activism: ‘It’s not as sexy as gay rights or climate change’
Roxan Perez and her service dog Max join a 2010 protest in Washington DC. Photograph: Chip Somodevilla/Getty Images
The history of the disability rights movement, featuring a litany of impressive activists determined to create a world where everyone, regardless of impairment, is valued and can participate fully.
The story of the rise and triumph of the disability rights movement, featuring some of the most impressive activists you’ve never heard of. The film uses exclusive interviews with movement leaders from the past five decades, combined with rarely seen archival footage sourced from Australia, USA and the UK. The story begins in the big institutions where disabled people were routinely imprisoned for life. From the 1960s onward, small numbers began to escape, only to end up battling a brutal and dehumanising system. Defiant Lives is full of extraordinary characters determined to create a better world. Festival guest: Sarah Barton This film is nominated for the Documentary Australia Foundation Award for Australian Documentary.
The 64th Sydney Film Festival – 7-18 June 2017
When you talk about disability rights with people, they just look at you like they didn’t think such a thing existed,” says Dr George Taleporos. “People don’t like talking about, hearing or watching disability. It’s not as sexy as gay rights or climate change. It’s just not.”
Taleporos is a disability rights activist, and a wheelchair user. He appeared in the first season of ABC TV’s You Can’t Ask Me That and now in the feature film documentary Defiant Lives. Director Sarah Barton tells a largely untold story, charting the history of the disability rights movement in Australia, the US and the UK. “As someone with a disability, it’s really novel to see a film about your people,” Taleporos says.
“Disability is never represented from a human rights perspective. It’s represented through a lens of pity, or stories about overcoming the odds. The hero who, despite their hideous impairment, was able to get into the Paralympics. It’s all about the hero and pity narrative. Never about the disability rights narrative.”
Drawing on research from experts such as Taleporos, Barton’s documentary asserts that this hero/pity narrative created a negative stigma that still has powerful implications today. It is associated with the medical model of disability, which is often criticised for treating people with disabilities as lacking or abnormal – or as if they are sick and in need of a cure.
Barton has previously explored disability issues in productions including Australia’s first disability culture program, Channel 31’s No Limits, which was hosted by the late Stella Young.
“When you hear of people having a baby, they say things like, ‘I just want the baby to be healthy, I just want it to be normal’,” Barton says. “It’s kind of like disability is the worst possible thing that can happen. The reality is that it’s not.
“Yes, it does lead to hardship, but often that hardship is due to lack of support and lack of understanding on the part of society. People’s difficulties and hardships could be minimised if people with disabilities were well supported by the community.”
The cradle-to-the-grave approach to caring for people with disabilities is expensive. It’s no surprise, then, that fundraising initiatives, such as telethons, have been introduced over the years to boost coffers. You know the kind, with dance numbers, puff pieces and wall-to-wall “inspirational” and/or tear-jerking stories interspersed with calls to action for viewers to cough up some coin.
Defiant Lives shows vision of such a telethon from the 1970s, featuring some the biggest names in local TV at the time including Barry Crocker, John Farnham and Pat McDonald. They hold hands, smile for the cameras and sway along to What the World Needs Now is Love. An image appears on screen with text reading “Happiness is helping spastic children”.
Then, the documentary abruptly changes tone. Barton transitions to intense, pulse-pounding footage showing how members of the disability community responded to such broadcasts. Which is to say: not positively.
Furious anti-telethon campaigners, many in wheelchairs, gatecrash these events. They picket and protest. Some hold placards printed with messages such as “No pity”.
“There was the assumption that telethons were a good thing for people with disabilities,” Taleporos says. “But the reality was that all they did was make them think that they were going to die tomorrow, that their lives were worthless, and having a disability was the worst thing in the world.
“People would look at them and feel sorry for them, rather than give them jobs or ask them out on a date. The sort of things we want from other people.”
Of course, Barton adds, initiatives like telethons came with good intentions: “I think a lot of people got involved because they wanted to help people,” she says. “But where they failed was when disabled people spoke up and said, ‘No, this is not the way we want to be portrayed. This does not give us dignity and respect.’ Many of the people running those charities did not listen. The charities had also become addicted to the money they were raising.”
Most organisations, such as Yooralla, scrapped their telethons a long time ago in response to this community outcry. One that persisted for many years, in the face of considerable protest, was run by a person reviled within the disability community: the comedian Jerry Lewis.
“I remember watching Jerry Lewis on TV reruns,” says Taleporos. “I never knew he was such a dickhead until I became aware of the disability rights movement.”
The Jerry Lewis MDA (Muscular Dystrophy Association) Labor Day Telethon lasted for almost half a century – from 1966 to 2014, with Lewis dropping out as host in 2011. Some likened the event to a modern-day equivalent of the notorious 1932 film Freaks. It didn’t help when Lewis wrote an astonishingly ill-advised magazine article entitled If I had muscular dystrophy in which he described people with MD as “half a person”.
Says Barton: “Jerry Lewis was the worst offender, because he just said, ‘No, I know better than you do’, and kept going for decades in the face of protests. But there were others as well in Australia – the Miss Australia quest [which doubled as a fundraising initiative], that sort of thing – where really, they knew for a very long time that this pageant and quest and everything was on the nose, and they didn’t do anything about it.”
The director spent eight years constructing Defiant Lives. The documentary addresses various historical frameworks that have provided a lens through which sections of society have viewed disability rights – including social, medical and charity models.
It is also a film intended for mainstream consumption, with the aim to fill a gap in the market. As Taleporos observes: “When you go on Netflix, there’s a documentary about every single stupid topic you could ever think of.” But never any about disability rights.
American blogger and human rights activist Dominick Evans has described Defiant Lives as “essential viewing”, but says there are gaps in its focus, including a lack of people of colour and of insight into work achieved by the deaf community. Barton says she captured examples of both in the shoot, but struggled to fit them into the narrative in the editing room
“In a way it kind of goes against the premise of the film, which is that regardless of what your disability is, these issues apply,” she says, addressing the criticism around lack of hearing-impaired people. “These issues of social barriers really do apply across the board. I never once went, ‘Oh, I haven’t got enough people with cerebral palsy’ or ‘I haven’t got enough blind people or deaf people.’ I was not concerned with what people’s impairments were. I was concerned with their role in the bigger picture of the disability rights movement.”
Making Defiant Lives palatable for general audiences involved homing in on areas of conversation far removed from things you find in textbooks or at conferences. Thus the riveting, at times hair-raising footage – including protests with disabled people literally putting their bodies on the line by chaining themselves to buses and throwing themselves off wheelchairs.
“That’s when I knew I had a good film on my hand, when I found that,” says Barton. “I wanted an audience not necessary connected [to the disability community] to see it. I want the film to open their minds to something they haven’t necessarily thought about.”