At a community hall in Adelaide, Esther Simbi can be found leading workshops on what it means to have a disability today in Australia.
On the day SBS News attends, the assembled group is from the Bhutanese community, and like Ms Simbi, many members have been exposed to negative cultural stigmas and connotations associated with being ‘disabled’.
“When I was growing up, I was made to believe that disability was a curse,” Ms Simbi says.
Ms Simbi has muscle atrophy, scoliosis and debilitating fatigue and pain, acquired from falling ill to polio at aged four in her home country of South Sudan.
“People with disabilities were put in boxes ... but when I was 20, I broke out of that box and I started to challenge my own perception of disability,” she says.
Disability advocate Esther Simbi. Source: NDIS
“I am living proof that even if you have a disability, you can still live a successful life.”
But Ms Simbi is not alone in the constant struggle to reframe what it means to have a disability.
Tackling stereotypes
Lisa Cox is the disability affairs officer at Media Diversity Australia. She says another major misrepresentation of people with disability results in “inspiration porn”.
The term refers to the harmful portrayal of people with disability as inspiring solely on the basis of their condition and was coined by Australian disability advocate Stella Young, who died three days after International Day of People with Disability in 2014.
Ms Young railed against the juxtaposition of uplifting quotes on images of people with disability doing “something completely ordinary”.
“Let me be clear about the intent of this inspiration porn; it’s there so that non-disabled people can put their worries into perspective,” she wrote in a 2012 opinion piece.
“It’s there so that non-disabled people can look at us and think ‘well, it could be worse… I could be that [disabled] person.’”
Ms Cox says that this attitude still exists today and remains harmful to the community.
An image cited by disability advocate Stella Young as an example of what she coined 'inspiration porn'.
“The question you need to ask yourself is, 'would that be inspirational if a non-disabled person was doing it?' and if the answer is no, then it's really not that inspirational if someone with disability is doing it as well.”
Increasing representation
While there have been some recent examples of increased disability representation in the television and film industry, including the first deaf Marvel superhero, Makkari, in the film Eternals, and the prominence of entertainers including Adam Hills, advocates say it still remains relatively small.
"We're seeing people in the Paralympics field like Kurt Fearnley and Dylan Alcott, and that's fantastic. Hannah Gatsby, as a comedian, but really, there aren't too many other household names or television screen names that you can mention that are people with disabilities," says former disability discrimination commissioner Graeme Innes.
"When you consider that there is 20 per cent of people with disabilities in the population, we need one in five of those household names to be people with disabilities."
"Screen Australia's research indicates that we are only represented on screens at a level of four per cent."
The impact of misrepresentation means people with disability become subject to “the bigotry of low expectations” and struggle to find employment, Mr Innes says.
“Most people's perceptions about people with disability are negative. And most of those perceptions are wrong, but they are reinforced by ableist language which, if you like, equates disability to ineffectiveness, or incompetence or lack of capacity to carry out the work or deliver on the work."
Mr Innes appeared at the 19th hearing of the Disability Royal Commission in late November and testified that employment rates of people with disability were "abysmal".
The latest data provided at the hearing showed the labour force participation rate of people with disability who are of working age was 53.4 per cent, much lower than the 84.1 per cent for people without a disability.
“We stay longer in jobs than people without disabilities, we make fewer workers compensation claims, we take less sick leave, and because of the issues that we need to manage in our lives as a result of our disabilities, we make better managers, all very persuasive reasons for employers to make a decision to employ us,” he says.
Disability 'can be beautiful'
Former Paralympian and disability advocate Kurt Fearnley says there are positive signs the wider community has become more receptive to people with disability, pushed along by the increasing exposure.
“Disability doesn't mean a negative thing to the people within it. It can be beautiful, and supportive and amazing and creative. We are seeing more variation of disability, we are seeing it in more places.”
The stories and messages he says are not new, "but community now have have found a space where they can actually embrace those conversations."
“I still think we’ve got a long way to go ... I see a huge amount of opportunity ahead of us.”
The Seven Network, which was the Tokyo Paralympic Games broadcaster in Australia, reported 1.94 million people tuned in to the event’s opening ceremony, surpassing the previous record set by Beijing in 2008.
Commonwealth Games wheelchair race gold medalist Kurt Fearnley signs autographs during a street parade in 2018 Source: AAP
At the forefront of the coverage were two former athletes with a physical disability - Fearnley and former swimmer Annabelle Williams - who were among the co-hosts.
Such inclusion was not lost on this year’s Australian team co-captain Danni Di Toro.
“[We had presenters] who had a disability, who were kind of reflecting our stories ...” Di Toro says.
“Instead of us being told, or the perceptions put onto us, people during Tokyo really got to see us for who we are. We got to tell our stories in the way that kind of works for us.”
Co-Captains of the Australian Paralympic Team in Tokyo, Danni Di Toro and Ryley Batt. Source: OLYMPIC INFORMATION SERVICE/IOC
“I think that created a really beautiful way for us to be seen by the general public, but also a way for us to be able to speak to people.”
International Day of People with Disability is marked on 3 December.
