Elena Filipczyk - 2025 Writers series
Yes, the NDIS is ableist, and fighting it takes a personal toll. Together, though, we’re creating change.
‘So what do you do?’
The question came from a new acquaintance, and I replied with my standard answer: ‘I’m doing a PhD and working part-time.’
‘Wow!’ she replied. ‘That must be a lot.’
‘It’s actually the least stressful thing in my life’, I replied, forcing a laugh when I realised I’d let my mask slip.
‘Oh.’ She paused. ‘Why?’
For a year, I explained, I’d been fighting the NDIS (National Disability Insurance Scheme) — for my autistic twin sister and for myself—and it was an uphill battle from the start.
Ableism within the NDIS: why it’s so hard to navigate the NDIS
Although the NDIS is designed to help disabled people, the scheme is fraught with ableism — a form of discrimination that harms the disabled.
As disability scholars and activists have shown, ableism is a pervasive, contagious social structure that influences all corners of society, including government services.
Born of ignorance, ableism is why people view physical conditions as more ‘real’ than psychological ones.
It’s why disabled people are expected to ‘just try harder’.
And it’s why, even though around 4.4 million Australians have a disability, only 550,000 of us are on the NDIS. Many of us don’t have the education, energy, support or ‘right diagnosis’ to apply in the first place. Take my twin sister, for example. The rarity of her toileting disability has enabled the NDIS to reject her application twice.
But ableism is rife even for those who do access the NDIS. As a 2020 study by Chris Horsell found, the NDIS reinforces existing social structures like ableism, sexism and racism, therefore marginalising disabled people who are already disadvantaged — like women, people of colour, or those living in poverty.
Deeply rooted and socially constructed, ableism is also why accessing the NDIS support can be punishing and, sometimes, humiliating.
The burden of explaining yourself to people who don’t seem to care or understand
After a lifetime of suffering in secret and wondering what was ‘wrong’ with me, I got diagnosed as autistic at the age of 28. Eventually, I got around to applying for the NDIS, hoping I’d finally get some help.
‘What supports do you want to access?’ the NDIS planner asked me.
‘Just two’, I replied. ‘I’d like to get my psychosexual therapist covered, and pelvic floor physio. And maybe a hearing aid for my left ear.’
My hopes were dashed instantly. Reading out the policy, the planner told me that hearing aids and those therapies were ‘not related’ to autism and therefore not covered by the NDIS.
Out of view of my webcam, I anxiously snapped my plastic pen into tiny pieces, taking deep breaths in preparation for what was to come.
Embarrassed, I explained how my autistic anxiety and trauma were stored in my pelvic muscles, a condition called vaginismus. My voice shaking, I told the NDIS planner that my therapies would hopefully mean that one day I’d have the confidence and physical ability to have a normal sexual relationship — just like any other 31-year-old. As a grown woman who can write a PhD thesis but struggles with basic social situations, these are supports I consider reasonable and necessary, to use the words of the NDIS.
The planner disagreed.
‘Not everyone who has autism experiences trauma’, she said bluntly. ‘There’s no direct link from autism to psychosexual therapy or pelvic floor physiotherapy for your vaginism-’. She stumbled over the word. ‘Or whatever’.
At the end of the call, despite the fact I have no speech impediment, she offered me access to a speech therapist.
‘It’d be funny if it wasn’t so depressing’, I told my psychosexual therapist a week later. She shook her head in disbelief, apologising on behalf of the planner.
Weeks later, in a bid to ‘prove’ my support needs, I had an occupational therapist (OT) conduct a functional capacity report. Thankfully, like my therapist and unlike the NDIS planner, my OT understands that disability is dynamic, overlapping and highly contextual. Meeting her, though, I had to tell my story. Again.
The importance of self-advocacy
Self-advocacy is hard work. It’s another emotional and physical price we pay for being disabled, and it’s seemingly endless: booking doctor’s appointments, managing our conditions, dealing with bureaucracy and, perhaps hardest of all, trying to advocate for ourselves to people who lack basic empathy yet boast an abundance of unflinching judgement — and power.
In this regard, author and ‘Mother of the Disability Rights Movement’ Judy Hoeman said it best when she explained: ‘Disability only becomes a tragedy for me when society fails to provide the things we need to lead our lives’.
In other words, we’re not the ones who are broken. It’s the system — the social, legal and political organisations that were designed by the able-bodied and able-minded.
Sadly, though, it’s largely up to the disabled to force change. This, Hoeman said, ‘never happens at the pace we think it should’. Instead, ‘It happens over years of people joining together, strategizing, sharing, and pulling all the levers they possibly can. Gradually, excruciatingly slowly, things start to happen, and then suddenly, seemingly out of the blue, something will tip.’
In Australia, the creation of the NDIS was that tipping point. But the scheme is still, as my OT explained, a ‘baby’. And while the government must excise the money-haemorrhaging third-party providers who are rorting the system, the work of advocacy still rests in our disabled hands.
‘Just my being here is self-advocacy’: lean into your power and your community.
Self-advocacy is a sometimes-quiet, always-radical personal act with ramifications that ripple out into society, building community and challenging ableism.
But self-advocacy doesn’t have to be public, like writing articles or making TikToks. Often, it’s just about showing up. In their 2021 journal article, authors Ivanova Smith and Carolyn O’Mueller note how one disabled graduate student, who was also a person of colour, stated of her postgrad experience: ‘Just my being here is self-advocacy’.
So where is ‘here’ for you? Is it in higher education? At a community event? Or is it as a participant within the NDIS, advocating for yourself, but really advocating for everyone else like you?
Though it may not feel like it, our tiny acts of everyday advocacy have a profound and collective impact. Even if we feel small and inconsequential in doctor’s appointments and NDIS meetings, we’re never alone. In person and online, we commiserate, celebrate, organise and advocate. And slowly, together, we create change.