US street protest - screen shot from Defiant Lives. Image courtesy of Fertile Films.

Defiant Lives: disability activism hits the big screen

Victorian College of the Arts alumna Sarah Barton’s documentary Defiant Lives introduces the world to the activists it’s never heard of, and charts the rise of the disability rights movement. 

By Sarah Hall

“I’m tired of all the well-meaning non-cripples determining what I can and cannot do to form my life, and my future. Get out of our way.”

So says Adolf Ratzka, one of the interviewees in filmmaker Sarah Barton’s latest documentary Defiant Lives, which tells, for the first time in feature-length, the incredible story of the disability rights movement in Australia, the United States and Britain.

The meticulously-researched documentary follows the story of people with physical and intellectual disabilities – from a time when life-long institutional confinement in inhumane conditions was the norm, through to other, more pervasive forms of ontological, constitutional, and access-related oppression.

It documents how, from the 1960s, disability activists have fought for civil rights, including equal opportunities for independent living, employment and education, housing equity and freedom from discrimination, abuse and neglect.

Disability rights activists have seen landmark developments over time, from a United Nations declaration on the rights of the disabled in 1975 to the National Disability Rights Scheme (NDIS) which was rolled out in Australia just five years ago and continues to be a source of debate within Australian politics.

Clearly, there’s still a long way to go.

Barton graduated with a diploma from VCA Film and Television (FTV) in 1992, at which time she didn’t necessarily see herself as a disability rights activist, though she did have a connection to it, given her ex-husband had an acquired brain injury.Sarah Barton. Image courtesy of Fertile Films. Director Sarah Barton. Image courtesy of Fertile Films. 

Her graduating film was a comedy called Thanks For Coming, starring Kate Langbroek and Oscar-winner Adam Elliot (director of Mary and Max), about a lesbian couple trying to get pregnant with a turkey baster during the AIDS epidemic.

In 1994, she saw an SBS ad in Encore magazine urging filmmakers to pitch ideas for documentaries.

“I pitched an idea about sex and disability that I got after meeting a woman who sold sex toys for people with disabilities.”

SBS ran with the idea and the result was a documentary called Untold Desires, which ended up winning the first ever Logie for SBS, and established Sarah Barton (then Sarah Stephens) as a name.

She then made Secret Fear (1997), a documentary about anxiety disorders, obsessive compulsive disorders and hoarding, followed by A Wing And A Prayer (2000), about women from the Horn of Africa settling in Melbourne, which was picked up by Oprah Winfrey’s channel for American distribution.

Barton then went on to make 70 episodes of a pioneering TV drama called No Limits (2003–5) starring disabled protagonists, including Stella Young and George Taleporos in their first television roles.

Disability rights activist George Taleporos.. Image courtesy of Fertile Films.Disability rights activist George Taleporos. Image courtesy of Fertile Films.

Her career, she says, has been a balancing act. While studying at the VCA, she was raising her first child.

About three weeks before shooting began for A Wing and a Prayer, Barton gave birth for the third time to her daughter, Stella, and was “literally directing with a baby in a pouch”.

“I had a really, really bad birth with my daughter,” she says. “Everything that could go wrong did go wrong, and so a few months later Stella developed Cerebral Palsy.”

On the day I interviewed Barton, Stella was completing her final VCE exam.

“She’s a real activist in the making,” says Barton. “She really wants to work as a kind of advocate for disability rights, so I think she’s been influenced by me somehow, as much as I’m influenced by her.”

I tell Barton that watching Defiant Lives exposed my own lack of awareness and knowledge about the disability rights movement. Why has it gained less attention than other civil rights movements? Why is it that racism, sexism and homophobia are far more commonly used, and better understood, terms than ableism?

“Look, I think there’s always been this really sort-of patriarchal view of disabled people.” she says. “The idea that they need to be looked after, and that they don’t have agency to speak out on their own behalf.”

Some of the very things disability rights activists have been fighting for have themselves – ironically – been obstacles. Inaccessible public transport has made congregating difficult for many people, to name just one issue.Arresting a protester, screenshot from Defiant Lives. Image courtesy of Fertile Films.Arrest of a protester, screenshot from Defiant Lives. Image courtesy of Fertile Films.

“Of course, we’ve had improvements in communication and technology and now everything’s undergoing a revolution with social media. People with disabilities are connected through social media in a way that they’ve never been able to connect before,” says Barton.

But ableist prejudices still exist. The NDIS is no silver bullet.

“I think the thinking behind the NDIS was really to give everyone the right to support and inclusion, and I think over time it will prove itself to be really valuable in that way,” says Barton. “But we’re not there yet.”

Barton researched Defiant Lives for eight years, in parallel with the troubled roll-out of the NDIS. “I’ve always looked at myself as a filmmaker first, and then I find myself in this disability world, and it’s like, ‘What can I do with my filmmaking skills to improve the rights of disabled people?’”

That said, Barton’s main objective was to create something for people who may not have given disability much thought.

“This is a movement, and the people in the documentary are the leaders and pioneers – they’re the people we need to know about. Someone like [the late American activist] Ed Roberts should be as well-known as Martin Luther King, but he’s not.”

As the first feature-length film of its kind, Defiant Lives lends historical context to the ongoing plight of disability activists and, as such, paves the way for greater public discourse around a key societal issue.

In the words of Emeritus Professor of Disability Studies Colin Barnes, one of the many compelling voices in Defiant Lives, “The idea that you can focus on society as the problem, rather than impairment or condition, is a radical idea.”

Defiant Lives title copy. Image from Fertile Films.

The University of Melbourne is hosting a special free screening of Defiant Lives on Tuesday 5 December, 4.30–6.30pm. There will be a panel discussion chaired by Professor of Disability and Inclusion Keith McVilly featuring Sarah Barton (Filmmaker, VCA Graduate), Frank Hall-Bentick (Disability Activist) and Jess Kapuscinski-Evans (Theatre Maker, Malcontent and Singer). Register here.

Banner Image: US street protest, as seen in Defiant Lives. Image supplied by Fertile Films.