Lifeboat in the ocean

Dear Debriefers,

Today we're going down under to understand Australia's uniquely ambitious but perhaps unsustainable approach to disability benefits. Its many unintended consequences leave us with vital lessons on how disabled people can be supported more effectively.

After that we go back in time to see how the US Civil War changed the position of disabled people, and catch-up with other recent disability news to see a fundamental shift in the field of mental health and some quotes of the month.

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Disability Debrief is supported on a pay-as-you can basis. Thanks to Rosangela, Say, Tonya and Tyler for new contributions.

Lifeboat in the ocean

The Australian National Disability Insurance Scheme (NDIS) is a bold reimagining of how a government can meet the needs of disabled people. With a rollout starting in 2013, it now supports over 600,000 disabled people based on their individual needs. There's a big range in level of support to “participants”, with an average of $40,000 USD per year, although most individuals receive much less than this.

This is an important investment in disabled people, providing vital services through childhood and working age. It's based on the idea that consumer choice and market dynamics can solve the exclusion of disabled people. We can learn as much from its ambition and scope as we do from the design flaws and implementation challenges that I explore here.

Nuclear costs – at over 20 billion USD annually the NDIS is already bigger than many other health and social investments, and expected to continue ballooning. The government minister says it needs a “reboot” and an opposition leader suggested spending the money on nuclear submarines instead. A wide-ranging government review is coming in December.

Not microwave friendly. But not every disability-related problem has a disability-related solution. The NDIS doesn't provide for what it calls “everyday expenses”, even if they're less expensive and the most relevant way to meet people's needs. Writer and and advocate El Gibbs sums up these absurdities with the example of a microwave:

“Half of disabled people live in poverty, and may live in places without decent cooking facilities. What if a microwave would make eating more accessible? What if a microwave would mean access to cheaper freezer meals, without the need for a support worker? Bad luck, the NDIS won’t fund a microwave, even when this might be a much less expensive option than having a support work come and cook a meal, and might be what the disabled person actually wants.”

We want to join the dance. And all too often, the solutions provided aren't leading to everyday inclusion. As Micheline Lee writes:

“I could go around all day with a support worker and be safe and supported. And I could continually scout ahead to locate the limited places that are accessible and go only there. [...] I want my community to be open to all and inclusive. I want to get bogged at a beach in my wheelchair and know people will help. I want to push into a crowded, heaving mosh pit and join the other dancers.”

Lifeboats as the ship sinks. Pouring money into disability-related support isn't by itself going to make us equal members of society. But the NDIS is crowding out different investments that are needed too. Disabled people not on the scheme are left behind as other disability services are reduced to disappearing and public services remain inaccessible. The NDIS has become an “oasis in the desert”, or, alternately, a “lifeboat in the ocean”.

The lifeboat gets taken over by pirates

Criminals and opportunists. As ever, the problem isn't folk faking a disability to get a benefit. The problem is people pretending to help us. Writer Elena Filipczyk gives examples of service providers' costs: “the NDIS is being rorted, but not by autistic people like me”.

For all the nice ideas about being based on individual needs, the “support” is still far too often the all-too-familiar practices of segregation. A distressing ABC documentary shows how even as the scheme transforms the lives of many it fails to protect disabled people. The NDIS allows “criminals, opportunists and registered providers” to overcharge and defraud the scheme, with “the most vulnerable people used as cash cows”.

The largest providers of disability group homes under the NDIS see thousands of incidents of neglect or abuse, and residents with little or no choice about where they live. Disabled people are “kidnapped” by providers taking advantage of how their funding can be drained. Money even went to a clinic associated with a cult whose founder said disabled kids were in past lives dictators and corrupt generals.

Taking ourselves off the market. The NDIS was structured by turning disability services into a market. But it's not a fair market if the consumer doesn't have choice, or only has a limited menu. A genuine marketplace for disability services would be achieved by giving disabled people money and letting them do what they like with it.

Ahead of the government's review, Disability Advocacy Network Australia studied what a the NDIS could be. In an argument that reminds of our discussions about care, the author argues for a radical redesign that gives power back to individuals and communities:

“Consumerism, privatisation and bureaucratic control don’t seem to be the right way to respond to the problems we face today. I suspect that we need a fundamental change in the kind of thinking we apply to help us face the challenges of the future. We need to give more importance to the natural world, to our relationships, to communities, in all their diversity, and to the quality of our own citizenship.”

Polished pathway

The importance of a new approach to disability supports is brought out in particular by the situation of people with intellectual disabilities and their families. Catherine McAlpine of Inclusion Australia has a powerful description of how current systems form a polished pathway. It starts from “small decisions in childhood” and incrementally leads into a poorly paid and segregated workplace:

‘Families make what feel like ‘safe’ parental choices during those early tricky school years when everything feels overwhelming and tiring.

Before you know it, you’ve gone on a different journey than what you expected and ended up in a place miles away from your dreams.

How does this happen?

Imagine being told in early childhood intervention “Your child will never cope in mainstream school, and they will never cope with her”.

And so, you “choose” special school.

Over the next few years, the convenience of things like dedicated transport and specialised holiday programs makes it easier to stay.

When your young person becomes eligible for the Disability Support Pension the only employment information you are given is about Australian Disability Enterprises (ADEs). You have no idea what other choices and supports might exist.’

War unmakes legs

An excellent online exhibition from Emerging America shows how the US Civil War of 1861-1865 transformed the place of disabled people. With extensive archive material, it argues that the war led to further medical and bureaucratic attention to disability, and this shifted society's approaches away from inclusion-through-pity towards a fear-motivated exclusion.

Significant attention to injured or disabled soldiers during and after the war had long-lasting effects. In 1863, at the height of the war, Union difficulties in recruiting soldiers led to formation of the Invalid Corps, made of soldiers who wounds or disease had left “unfit” for frontline service. By the end of the war 60,000 soldiers served in this new branch, which manned reserve positions.

Response to disability during the war accelerated provision of benefits and the development of institutions for disabled people. Veterans of the war had a lot of political power and for many years after got disability pensions from an expanding Bureau of Pensions. And institutions like the Government Hospital for Insane Soldiers or other Soldiers Homes grew quickly.

The long shadow of the civil war is perhaps best illustrated in the lives of Oliver Wendell Holmes Senior and his son of the same name. At the outbreak of war, the father was the dean of the Harvard Medical School and spoke to the developing possibilities of prosthetics: “War unmakes legs, and human skill must supply their places as best it may.” Apparently the son, Holmes Junior, ended up desiring such an amputation after getting shot in the foot in 1864.

Holmes Junior went on to have a long career as a judge, and was appointed to the Supreme Court in 1902. In a ruling that casts its shadow even today, the Court decided it was constitutionally acceptable to surgically sterilise disabled people against their will. Holmes, then aged 86, implicitly referred to the experience of the civil war to argue for the eugenicist position:

“We have seen more than once that the public welfare may call upon the best citizens for their lives. It would be strange if it could not call upon those who already sap the strength of the State for these lesser sacrifices”.

A fundamental shift

Earlier in the year we explored the medical focus of global mental health. A vital antidote to that approach has come in the form of guidance on mental health, human rights and legislation from the United Nations Human Rights Office and World Health Organization (WHO). It argues that a “fundamental shift is required within the field of mental health”, pointing to failures in the status quo:

“During the past 150 years, legislation on mental health has legitimized and, in some cases, facilitated these human rights violations: early laws consolidated paternalism and the concept that people with mental health conditions and psychosocial disabilities are ‘dangerous’. Existing mental health laws have significant implications for human rights, being often outdated, narrow in their understanding of human rights, and reliant on a reductionist biomedical model. The stand-alone legislation of most countries includes provisions to limit rights, such as through involuntary commitment and forced treatment, restraint, and seclusion. Furthermore, mental health laws often reinforce power structures and contribute to the oppression of marginalized populations.”

The guidance understands mental health in a socially-grounded and rights-based way. It is an important transition in how these issues are conceptualised and, for a UN report, gives surprisingly concrete recommendations on how countries can reshape their legislation. But it remains to be seen whether even WHO, let alone others, will take on these new approaches.

Self-portrait as a mushroom

Here are some of the favourite phrases I read in the past month:

Plot twist! Squeaky Wheel satirists have had enough of companies asking people to disclose their disability. Instead “this company encourages employees to disclose if they're ableist”.

Two fingers. Lucy Delap's lecture on the history of employment quotas in the UK quotes oral history from the 1970s, including Barry Morgan:

“I think, the best memory that I 'ave is achieving the ability of being independent, by being self-employed, and putting my two fingers up at society in general.”

On the surface of the skin. In an essay on disability and climate change, Julia Watts Belser explores the politics of invisibility and idea of invisible disability:

“While the distinction between visible and invisible disability may make sense as a tactical strategy in certain situations, I worry that our investment in these categories risks reifying this division as ‘natural.’ Instead, I contend: Invisibility is a state that owes as much to widespread cultural failures to expect disability and make space for its presence, as it does to the fact that certain forms of difference, pain, or limitation do not register upon the surface of the skin.”

Saved me. Lucy Webster on how her disability helped her reject society's norms about women's appearances, and learn to love her own body:

“I look down at my own body, spreadeagled on a sun lounger. I look at my bent spine, my uneven hips, my hands twisted outwards – all symptoms of my cerebral palsy – and a wry smile crosses my lips. I look down at my body – disabled, ostracised and desexed by an ableist society – and I think: ‘Thank you, you have saved me from all this crap.’”

Self-portrait as a mushroom. In an essay on storytelling and chronic illness, I found Abi Palmer's exploration of her affinity to the fungal kingdom:

“Like a mushroom, I appear strong and vibrant, but I’m very easily pulled apart. I have infirm, permeable edges and a lumpy alien shape. I too am spongy and viscous. I too bruise easily. I too spend a lot of time in the dark.”

“This time I'll be myself”. To close out with a Netflix recommendation, I've just enjoyed Can You See Us, a Zambian film about a young boy with albinism inspired by the life of musician John Chiti. He comes to age through the pain and dangers of prejudice and rejection, and with the people who help navigate them to a better future.

Cheers,

Peter

Acknowledgements

Thanks to the brilliant El Gibbs for conversation and sharing a whole range of links, including that of the “polished pathway”. I couldn't have written in such detail about the NDIS without her. (Mistakes are mine, of course.)

Disability Debrief is supported by the individuals and organisations that read it.