The cost of exclusion
This series, so far, has focused on incomes of disabled people and how that contributes to economic marginalisation. Another key influence on poverty that isn’t as often discussed is access to public goods and services.
Too many disabled people face daily, major and ongoing exclusion from mainstream public services, like health and education, but also don’t get their specific needs met in those public services. Access to the services we need becomes dependent on the amount of money disabled people have, and disabled people making impossible choices about where their meagre dollars go.
Transport is a good example of a public good or service that remains out of reach for so many disabled people. Both public and private transport continue to be inaccessible and discriminatory for us, while at the same time, many disabled people don’t drive.
This means that affordable public transport, so important to many on low incomes or relying on income support, becomes out of reach. This is part of why 31% of disabled people don’t leave home as much as they want to. The more expensive taxis or rideshare vehicles become the only options, and for those outside of the taxi subsidy scheme, again, leaves them stranded.
Another example of exclusion is the health system, where disabled people are mistreated, locked up and denied basic medical care, and then die decades earlier than other citizens.
Housing, education, infrastructure and employment too are all designed for one particular kind of body and mind, one particular shape, race and class of person, leaving disabled people out in the cold.
These all add up to the increased costs of being disabled - public services are intended to share costs among us all, but we are excluded from them and pay the price. And the specific services that disabled people need, the public services that we need and don’t have, are not seen as essential or mainstream or part of our idea of public, because we are not seen as part of the public.
The NDIS Review and the Disability Royal Commission did talk about this, with the Review specifically talking about ‘foundational supports’, as though our public services need a new, special name, just for us. Both reports talked about our deliberate exclusion, and laid out measures to change this.
For a brief moment last year, there was some hopeful intergovernmental cooperation and agreement that finally, finally, there might be some actual change. But lately, bickering and buck passing has resumed between different levels of government, all in a race to ensure that we remain left out of the community.
Meanwhile, a disabled person, Kyah Lucas, is burnt so badly that she dies, by those meant to be supporting her, and Lee-Anne Mackey is brutally degraded, again, by those paid to care for her. The response to the abuse and violence perpetrated by workers, services and systems on disabled people delayed, in some areas indefinitely.
I cried on the phone to a friend last night, after yet another meeting where I felt utterly worthless, unwanted, excluded, not heard. I didn’t mean to cry, but as I angrily explained, the arguments over what is and isn’t a foundational support utterly missed the point, I couldn’t stop myself. I pulled back the curtain on my life, just a little, and let out a bit of my deep rage and hurt about the costs of exclusion.
I sit all day in front of the work computer, arranging my expression politely at a series of faces, trying to navigate what they really mean and how to get my point across without being misunderstood. I swallow my indignation, the bile that rises from being told there is no place for me.
At the end of each long day, I shut the laptop and move slowly to the kitchen, flicking on the kettle as I go to put on my comfortable clothes. I take these same slow, painful steps every day, in the same order; the comfort of routine a balm after the maelstrom of the day. I sip the same herbal tea I drink every night and put on the same procedural crime show I’ve watched a dozen times.
My body hurts so much, so deep, so wide. The hot barbed wire around my spine digs in and makes me breathless with pain. My hips, legs, wrists, hands, feet, neck - all of it burns, nerves afire with emergency messages. I sip my tea, and watch the familiar show as I do the routine of telling my body not to panic, painkillers and rest are coming. I have done this for decades.
I don’t leave the house, I don’t see people, I don’t engage with my community in the town I moved to four years ago. Reports get written about my isolation, recommending that I do yet more work to fix that, but I don’t have the capacity to act on any of them. And there is nothing, no help to change any of this.
These days, I have many more resources than so many other disabled people, yet the costs of trying to engage with a world so hostile to disabled people are enormously high still. I spent years reliant on income support and remember so clearly, so deeply, going without so much that I don’t have to now.
All of this is hidden from those that see me on screens all day. These costs that the work demands are some that I willingly pay, but they aren’t an easy price to pay. And when those that see me and know me ignore those costs, pretend I am just like them, refuse to see my disabled life, honestly, it is so bloody hard to take.
The so-called foundational supports that the NDIS Review talked about are just another way to describe the exclusion that so many disabled people know in our very bones. The world designed for bodies and minds very different to ours, that allows non-disabled people to move about with all the supports and services they need, while we are left at the edges - excluded from public services, denied the essential supports we need and forced to argue and campaign for such fucking basic levels of dignity.
Your essential services and supports are there, visible, expected. You are entitled to them, you say, with such righteous indignation. We are taxpayers, you say, as though that is the only ticket to citizenship or one that only belongs to you.
Health services, education, the bloody roads, childcare, museums, football stadiums, national parks - all publicly funded services, all foundations to the kind of life you lead. And all provided in the collective public way, because that is what we know as the basis for a decent society, a good life. Some of you use some of them, and yet they are all thought of as public services, even though they are only for some of the public.
And when disabled people speak about how this leave us out, leaves us stranded, leaves us in pain, leaves us hurting, leaves us on the edge, we are painted as burdens, as costs, as not really people, and certainly not citizens.
No wonder I cried. I have spent my whole life being told by the world around me that I am not wanted. That my disabled self isn’t enough, isn’t right, isn’t included. Every stair, every closed door, every insistence that there is only one way to do something, the way that excludes me, every single time, comes with a cost.
A report commissioned by the Disability Royal Commission calculated that that cost of the systemic neglect of people with disability was $27.7b a year. Deloitte calculated that the cost of our exclusion was even bigger, finding that by investing in health, education and employment inclusion, ‘Australia could unlock close to $84.2bn per annum in collective economic and social benefits.’
The rates of employment for people with disability haven’t improved over the last three decades, and too many disabled people and their families live in poverty. We’re less likely to finish school or go on to higher education, more likely to live in public and social housing, and die younger than others.
We are twenty years behind reaching the now out of date Transport Standards for accessible public transport. Kids with disability are excluded from school at shocking rates. Prisons are full of disabled people, particularly First Nations disabled people.
Disabled people face barriers to having ordinary lives that non-disabled people don’t have. We face barriers to finding a safe and accessible home, to choosing who and where and how we live. We face barriers finding and keeping a job, and being paid fairly for that work. We face barriers to accessing sport, community activities, art, concerts and events. We face barriers to having our say about what happens to us and having our wishes respected.
Arguing about what foundational supports are, and are not, misses the point. They are a euphemism for trying to fix this exclusion, marginalisation, being left out, being told that you aren’t wanted or valued.
And if we don’t fix this, if things don’t change, this exclusion that non-disabled people want to continue will come at a cost, and disabled people will continue to pay the price.