Last year, I wrote about my impressions of the National Disability Insurance Scheme, along with other readers. I tried to point out that improving the life of disabled people is about a lot more than improving how they’re cared for and treated.
I’ve thought about that a bit since. Not long ago, I went to the doctor to discuss a battery of tests I’ve had in recent months: an ultrasound of my kidneys; a blood test; some x‐rays of my back and pelvis; a bone density scan; a gait analysis.
Our discussion wasn’t as chipper as I’d hoped. I’m 31 now, and walking around on crutches for a quarter century with a less-than-reliable nervous system has inflicted the kind of wear you’d expect. For the first time I’m getting new health problems that aren’t passing anomalies —they’re sticking around, and the focus of doctors is noticeably shifting from fixing to “slowing”, “managing”, “offsetting”.
And what happens from here on isn’t totally clear. Lots of people born with spina bifida in generations before mine didn’t survive to be adults, and it’s a condition that affects different people in different ways. The data is neither voluminous nor very instructive.
Of course, these problems have just the same timeless ingredients as everyone else’s: change, loss, a discomfiting awareness of ageing and mortality, uncertainty about the future. Having a disability, like any comparable nuisance, acts as a sort of prism for this omnipresent angst‐stuff – just letting you feel it more keenly, and a little earlier, than you might have otherwise.
That needn’t be a terrible thing. A slight narrowing of your available options can prompt a sharper focus on what it is you value and want. And a non‐lethal reminder that you’re getting older is just the ticket if you want to get moving on those new year’s resolutions. Note that I’m someone whose disability is moderate and predictable. I’m able to perceive, communicate and get around in ordinary or close‐to‐ordinary ways. If I were dealing with something acute or aggressively degenerative, of course it’d be tougher.
But I’m not sure exactly how much tougher I would find it. There’s no linear equation for weighing symptoms or prognoses against a capacity to cope: to rationalise and respond to your situation in a measured, productive way. How you manage that depends on a whole range of factors about you and that situation: what occupies your time, what you worry about and want, how much money you have, what your school was like, where you live, how well you eat, who depends on you, who your friends and family are – and, of course, who’s in government.
This diffuse matrix plays the same role with respect to disability as it does with so much of our lives. In the same way disability puts a sharp edge on the gritty stuff we all deal with, it magnifies the disadvantage some of us suffer more than others. Even a disability like mine requires decent coping skills and reliable social support, and profoundly curtails my eligibility for low‐skilled or manual jobs.
What this means is there’s a lot less margin for error. If you’re far enough ahead of the game, a handicap’s okay. But if you’re not – if you’ve left school with poor literacy skills, grown up with familial conflict, or struggle with the cost of living – then those things could be the difference between living well with a disability, and that disability stopping you, maybe forever, from being who you are or should have been.
And here’s the upshot. In the business of formulating policy, it’s a convenient fiction to see disability as a discrete area, and disabilities themselves as fixed and definable. If we want that policy to work, we need to keep an eye on the truth: that a person’s disability comes down to much wider facts about them and their circumstances.
Ultimately, dealing with disability means dealing with that wider reality. It means reducing the cost of tertiary education and training, both for those with disabilities and those who would become their teachers, carers, nurses and doctors. It means addressing intergenerational and geographical disadvantage; strengthening support for new parents; and improving access not just to disability treatment, but to affordable housing and legal services. In short, it means committing not just to the NDIS but to a fairer country, and a set of policies which complement each other in serving that vision.
The anaemic, rudderless performance of Abbott’s government suggests it neither promises nor aspires to that kind of leadership. And when set against the government’s general receptiveness to the Commission of Audit’s recommendations – and its uncritical acceptance of the Commission’s rationale – there is little comfort in COAG’s assurance on Friday that it will press on with the NDIS rollout despite the Commission’s proposals to the contrary.
Whether the Coalition follows through with the NDIS or not, it has already shown its contempt for the kind of society where the scheme could truly take root.