Scholar and activist Sunaura Taylor has pointed out that “disabled people are supposed to find the courage to overcome their own personal limitations through strength of character rather than by overcoming discrimination and oppression”.
How much do I tell them? That was basically what it came down to. My twin sister is autistic, bipolar, and has a permanent toilet disability. A few weeks ago, her application to access the National Disability Insurance Scheme (NDIS) was rejected for the second time.
Fuelled by furious indignation, I promised to write about it. To advocate for change. But how much can I tell the public before I cross a line? And when does educating lawmakers and broader society become an invasion of privacy and dignity?
These are questions people in the disabled community contend with every day, and in the wake of the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability and the passing of the NDIS reform bill, they are questions we need to take seriously.
“Doing” disability as unpaid labour
Scholar and activist Sunaura Taylor has dryly pointed out that “disabled people are supposed to find the courage to overcome their own personal limitations through strength of character rather than by overcoming discrimination and oppression”. It’s unsurprising then, that when disability discrimination and oppression are placed in the spotlight, the burden of proof still lands on us. Over and over, we retell our stories and parade our differences — to remind people of our existence, and to prove we need help.
During the Disability Royal Commission, almost 10,000 Australians shared their experiences of violence, abuse, neglect and exploitation, either by making a submission or participating in a private session. These testimonies amount to tens of thousands of hours of unpaid, emotionally-taxing work.
Then, there’s the related media coverage and online activism. In print, on radio and television, and in too-quiet corners of the internet, disabled people are made to “do” disability. Sometimes, we even do it without being asked. But is it really a choice?
“I’m desperate for help”, I wrote on X (formerly Twitter) one night. “Our parents are dead. We have no partners”, I explained, just to prove our social isolation. “My twin sister has worked full-time for years”, I clarified to a stranger who questioned her need for “taxpayer-funded” support.
“I’ve spent a lot of my savings trying to help my sister.”
“I’m taking time off paid work and study.”
“I’m so tired.”
I added an awful selfie for good measure, hoping my eczema-covered face and the dark circles under my eyes effectively documented my distress.
But why? Why do I live-post my anguish, and why do people like me submit to the scrutiny of royal commissions and legislation “consultation” periods with no promise of a return on investment? Asked to (and sometimes desperate to) reveal the most vulnerable parts of ourselves in graphic, emotional detail, we do so in the hope of reaching someone, somewhere, who might help us. Might.
This month, the promise of meaningful help has never felt further away. After four and a half years of witnessing “harrowing” evidence of the mistreatment and exploitation of disabled people, the Australian government accepted in full just thirteen of the 172 recommendations handed down in the Disability Royal Commission’s final report — though it accepted 117 recommendations in principle.
Less than two weeks later, the federal government passing a bill that will see sweeping cost-cutting reform to the NDIS. Disabled people and our advocates have reacted with “devastation”, “deep disappointment”, and “betrayal” — but, perhaps, not shock.
Wrongdoers
Many philosophers and historians have written about the function of truth and confession in society. In a series of lectures later published as Wrong-Doing, Truth-Telling, Michel Foucault examined the evolution of avowal, or truth-telling, noting that historically the practice has been tied to power and justice. Foucault claimed that the ritual of truth-telling is an essential piece of the judicial system and still governs modern, Western institutions like psychiatry and the criminal justice system. Criminals, for example, will admit their crimes to the police, just as the religious have long confessed their sins to priests. Now, people bare their souls at live-streamed public inquiries.
But it’s too simplistic to state that truth is powerful, and Foucault specified that avowal is not merely a declaration of truth that results in a specific outcome. Truth-telling “does not obligate one to do such and such a thing” Foucault stressed, adding that “the other must be able to accept, refuse, [or] break out in laughter”. It is from this unstable, nebulous point that the true power of avowal is found, precisely because things can easily go either way.
To “speak truth to power”, then, is often to cut oneself on a double-edged sword. Truth-telling can be a power-full act bound to the pursuit of justice, yet truth-tellers often do no more than highlight their own lack of power. In a cop shop, church confessional, or at the Disability Royal Commission, truth can, therefore, in Foucault’s words, “reinforce a power relation that exerts itself on the one who avows”. And like posting into the void or crying in front of steely-faced bureaucrats, the dignified, hoped-for response is rarely a given. “This is why avowal is always costly”, Foucault warned.
But it goes even deeper. For Foucault, avowal and power are tied up with morality. By virtue of their confessions, those who avow admit some form of character-defining guilt, fault, or what disability scholars call wrongness: through the act of admission, a citizen becomes a criminal, a bible-basher becomes a sinner, and a disabled person becomes a burden. Sensing the innate power imbalance, this is why witnesses at government inquiries often feel like they’re on trial — as if they’ve done something wrong, or as though they are wrong. For the disabled advocates who had to sign non-disclosure agreements after consulting with the government about their NDIS reform bill, this feeling of wrongness must cut especially deep.
That is not to say disabled people have actually done anything “wrong” or are truly “burdens”. But in a society built by and for the able-bodied and able-minded, disabled wrongness becomes our truth. If a government is cutting your support funding and even a Royal Commission is leaving you on read, how can you feel like anything but a complicated, expensive burden?
At the extreme end of disabled wrongness is eugenics, but everyday ableism is much more insidious. Working quietly to uphold the status quo, everyday ableism is found far beyond inaccessible bathrooms. Running deep in our corporations and governments, it is reflected in the standard of care and level of trust (if any) we offer disabled people.
Burden of proof
The Disability Royal Commission’s outcome (or lack thereof) mirrors the experiences of many disabled people when we try to seek help. The NDIS is a perfect example. The scheme is life-changing and life-saving — for those who have the ability and resources to access it. Today, around one in six or 4.4 million Australians have a disability, but only around 550,000 of us currently access the NDIS.
Within the disabled community, I have been told repeatedly that it is “normal” for applicants to apply two, three, four or more times before they are finally accepted onto the scheme. For people like my twin sister, the process escalates to the Administrative Appeals Tribunal (AAT). In 2022-2023, the AAT received 4,271 applications regarding the NDIS.
But why? How is it that multiply-disabled people like my twin sister can be knocked back from the NDIS?
Often, it comes down to a lack of “evidence”. For some, it’s a form that’s been filled out incorrectly or, as one consultant told me, “ineffectively”. For other applicants, their condition is deemed not a disability but rather a medical condition, with the NDIA then referring them to Medicare. And for people like my twin sister, the problem is their mixed bag of diagnoses, which the NDIA struggles to assess in combination — the evidence is there, it just doesn’t fit the mould.
Take autism, for example. Though by far the most common disability on the NDIS, and though autism is a disability with many complicating, comorbid conditions, people like my twin sister and I are at a great disadvantage in applying for the scheme given our “Level 1” autism is considered “high functioning”. As my sister has discovered, to prove otherwise is exceptionally difficult, even with diagnostic reports. For many disabled people, this burden of proof is simply too much — the compounding nature of disability and other disadvantages like poverty, trauma, and social isolation makes the access hurdles of the NDIS virtually impossible to clear.
Predictably, according to the government’s Select Committee on Autism, those most affected by a lack of government support include women and girls, the LGBTQ community, First Nations and culturally diverse populations, and those from regional, rural, and low socio-economic backgrounds. With the passing of the NDIS reform bill, these are the people most at risk of being denied access to support, or even losing existing supports.
Making the personal political
So is it ever worth it? Is it worth fighting the NDIS and going to the AAT? Was the Disability Royal Commission worth it? What about those who shared their thoughts on the NDIS reform bill during its rushed consulting period, only to have to sign NDAs? Without guarantee of real, meaningful change, how can we as disabled people balance our personal need for privacy and dignity with our political pursuit of justice?
As we await my twin sister’s hearing at the AAT, and as I write this article, I’m once again facing the same dilemma. How much do we tell them? In a flurry of angry desperation, I wrote an impact statement which I sent to the occupational therapist I hired. In 1,000 words of graphic detail, I outlined why my so-called “high functioning” autistic twin sister needs help. Too ashamed of the truth, my sister refused to read it. But the AAT will. And so will the NDIA.
“P.S.” I texted my twin sister, “I’m writing this article. Can I mention you’re in a psych ward?”
“Yeah”, she replied, “that’s fine lol”.
Elena Filipczyk is an autistic German-Australia writer, activist, and PhD candidate at the University of Wollongong. Her doctoral work examines power, privilege, and suffering across the fields of critical animal studies, disability studies, and Indigenous studies.
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Tags: National Disability Insurance Scheme, NDIS reform bill, sweeping cost-cutting reform to the NDIS