Opinion: Ableism is the ism we refuse to see

While much of the country is focused on racism, and obsessed with the completely fake “rise of One Nation”, the bigger ism quietly destroying our communities goes largely unnoticed.

Ableism does not march with flags or chant slogans. It does not always look like hatred. There are no competing protests in Melbourne over wanting a better accessibility and wanting to ban wheelchairs or similar nonsense. Ableism hides in policy design, budget spreadsheets, eligibility criteria, and language that pretends neutrality while causing immense harm.

The National Disability Insurance Scheme was ableist from the moment it was conceived.

Well-meaning boffins and bureaucrats designed a system for a very narrow idea of disability. Lifelong physical disability, the kind you can see. Wheelchairs. White canes. Permanent, static impairments that fit neatly into actuarial tables. Then, almost as an afterthought, they wedged in a handful of severe mental health conditions like schizophrenia, and neurodevelopmental conditions like autism, without ever designing the system around how those disabilities actually work in real lives.

They knew this would be expensive. But they also believed, with breathtaking confidence, that their statistics on how many people lived with “real disability” were accurate enough to manage. They were not. Not even close. The rest of the disability community wanted their share, and the scope creep began.

In the process, they built a system that was completely inappropriate for most people with disability, while simultaneously excluding huge numbers of disabled people entirely. Invisible disabilities. Degenerative diseases. Spectrum disorders. Chronic illness. Conditions that are lifelong, but not constant in how they diminish capacity. Disabilities that do not present the same way every day, or fit neatly into a single diagnostic box.

The promise was that the NDIS would finally be able to deal with variable disability. That it would be flexible enough to respond to people whose needs change, whose capacity rises and falls, and whose lives do not follow neat, linear trajectories. That it would empower people to determine their own care needs. That promise was never delivered.

And the cost of that promised utopia? The loss of the carer of last resort.

Under the old state-based systems, there was usually a government service that could not say no. The provider that took the people no one else would take. People with complex needs, challenging behaviour, severe trauma, incontinence, aggression, and care requirements so demanding they required superhero carers willing to deal with human filth, abuse, and emotional exhaustion on a daily basis. Those services were far from perfect, but they existed and were funded because someone had to carry the hardest cases.

The NDIS replaced that safety net with a market model. In that market, providers can and do walk away. If a client is too complex, too unpredictable, too unsafe, or too expensive, they are simply abandoned. The scheme that failed to deliver flexibility for variable disability, and introduced lack of certainty and fear to those with permanent disability, also dismantled the system that guaranteed someone would still turn up when everything else collapsed.

The result was predictable. The NDIS did not simply miss people. It actively rejected them.

The current push to “constrain the growth” of the NDIS is just ableism wearing a budget-conscious mask. When politicians and bureaucrats talk about sustainability, what they actually mean is deciding which disabled people we can afford to recognise as disabled. It is a process of asking how to quietly reclassify people out of eligibility, deny access, reduce plans, and push families back onto crisis services, charity, or nothing at all.

That is not reform. It is rationing dignity. An Orwellian ‘not all disabilities are disabilities’ in the interests of balancing the budget.

The recent murder-suicide of an entire family in Western Australia, reportedly linked to the loss of NDIS support for one of their two disabled sons, is gut-wrenching. It should also be deeply confronting. But for anyone working in the disability space, it is not surprising.

Despair is far more intense when you are given a glimpse of what life looks like with support, and then have that support taken away.

I know this from my time as a migraine advocate. We watched friends take their own lives after the federal government refused to list life-changing medications like Aimovig on the PBS. People were told they could access it temporarily through patient access programs. That it would just be paperwork. That of course it would be listed, because how could it not be, when it transformed lives and allowed people to work, parent, and function again?

Then it was taken away. Not because it did not work. Not because people did not need it. But because too many people live with migraine, the government was to cheap to give all those migraine people the support they need, and the drug company was not willing, understandably, to give away an expensive medication for free indefinitely. Hope was dangled, then withdrawn. The psychological damage of that cannot be overstated.

Ableism thrives on that cycle. Just like racism is fuelled and normalised as acceptable when the community is confronted by something scary, so to is ableism fuelled and normalised when bureaucrats are confronted by the cost of support.

There are increasing calls for the NDIS to be abandoned entirely and returned to state-based systems. I support that. Under the old system, I had home-based supports. Under the NDIS, I was denied access multiple times. The NDIA does not consider migraine to be a lifelong disability, despite it being a genetic neurological disease and despite the World Health Organization recognising it as being as disabling as quadriplegia.

That is not a medical judgement. It is an ableist one.

The Thriving Kids program as proposed is fine, as far as it goes. But it should be for all children under nine. Kids need early intervention, regardless of the suspected diagnosis. Families need support while they navigate uncertainty, stress, and fear. Early intervention can prevent some disabilities from becoming entrenched, and can reduce the need for lifelong support. Even where a child is born deaf, blind, or with a permanent disability like Downs Syndrome – where the need for lifelong support is obvious and irrefutable – families still need intensive early support to adjust, modify homes, learn new skills like sign language, and cope emotionally.

Beyond that, the NDIS itself needs to go back to a blank sheet of paper.

It failed because it started with an abled person’s idea of disability. It should have been designed from the ground up by people who live with disability, people who understand unpredictability, stigma, exhaustion, and the administrative burden of proving your suffering over and over again.

Ableism is not accidental. It is structural. And until we are willing to name it, and dismantle it, no amount of tinkering around the edges of the NDIS will fix what was broken at its core.

RK (Kath) Crosby is the CEO of research and strategy company KORE CSR, former strategist for the Australian Democrats, and a well known migraine advocate. She is also the Publisher of New England Times and North Coast Times.

Read more by RK Crosby here

Got something on your mind? Go on then, engage. Submit your opinion piece, letter to the editor, or Quick Word now.