DISABILITY DISCRIMINATION COMMISSIONER, DR BEN GAUNTLETT
“Australia’s Disability Strategy, Human Rights and the Convention on the Rights of Persons with Disabilities”
INFORMA NATIONAL DISABIITY SUMMIT
MELBOURNE (ONLINE), 16 AUGUST 2022
I wish to acknowledge and pay my deep respects to the Traditional Owners of the land where I am presenting to you today – the Gadigal people of the Eora Nation. I pay respect to their Elders; past, present and emerging and acknowledge their continuing connection to this country. I also acknowledge all other Aboriginal and Torres Strait Islander Elders and community members who are here today.
Ladies and gentleman, distinguished guests.
In Australia we value “fairness”; a “fair go”; an “opportunity”. Almost all Australians likely think of themselves as open-minded and respectful of difference. But we also grow up in an education system where an understanding of the diverse nature of individuals is assumed upon graduation.
Over time, we have learnt that sometimes we need to treat difference differently to create equal opportunity. Unconscious bias does exist. There is a recognised need to respect people at work; to Close the Gap for First Nations People; and racism needs to be called out – it stops with someone. I could give additional examples.
Disability Policy in Australia
However, in disability policy, there is no national call to arms. We refer to service systems or policy domains. For example, “protect the NDIS”. My simple point today is we need to focus on the overall policy framework and inform the framework with human rights principles.
Although the phrase, “Nothing About Us, Without Us” is used in the disability community, maybe what has been lost in societal debate is that 4.4 million people presently live with disability, over 80% of disability is acquired and over 80% of disability is invisible. In a sense, almost every policy touches upon disability – but disability is an afterthought. Universal design, reasonable accommodation and adaptability are not commonly used terms by policy and lawmakers. They need to be.
The compartmentalisation of disability policy has meant people with disability, or their representatives, are often expected to have the information and evidence to justify policy change and even when they do make their case, they need multiple levels and areas of government to support them. Large commercial interests have government relations practitioners and can engage professional service organisations to advance arguments, people with disability and their representative invariably do not.
A Disability Policy Re-think
In Australia, we need to radically re-think how we formulate disability policy. Data needs to inform decision-making and make invisible need visible (I am a huge supporter of a carefully implemented National Disability Data Asset with appropriate safeguards), but so too there needs to be an appreciation of structural disadvantage and workforce challenges (across disability, health, aged and veterans care). Above all there needs to be an appreciation of human rights and some of the challenges concerning people with disability identified in human rights treaties and associated documents.
The underlying model of the CRPD, which is a modern treaty developed over years of careful negotiation so as to be as practicable as possible in its operation, is the human rights model of disability, which recognises, that disability is a natural part of the human condition, and it must be respected and supported in all its forms. Furthermore, people with disability have the same rights as everyone else in society.
The CRPD is also based on a concept of “inclusive equality”. Inclusive equality was described by the Committee on the Rights of Persons with Disabilities in its general comments on equality and non-discrimination (Article 5 of the CRPD) as a concept which: “embraces a substantive model of equality and extends and elaborates on the content of equality in: (a) a fair redistributive dimension to address socioeconomic disadvantages; (b) a recognition dimension to combat stigma, stereotyping, prejudice and violence and to recognize the dignity of human beings and their intersectionality; (c) a participative dimension to reaffirm the social nature of people as members of social groups and the full recognition of humanity through inclusion in society; and (d) an accommodating dimension to make space for difference as a matter of human dignity.”
Australia can be the “Lucky Country” for how it treats all people, whether with or without disability, with dignity and respect – but to do so for people with disability it needs to explicitly acknowledge the need to deal with inequality. It needs to do so in a structured and transparent way.
National Disability Insurance Scheme
For over a decade, Australia has tried to implement a revolutionary disability policy that changes the lives of not just people with disability but the community and society in which they live – the National Disability Insurance Scheme. This policy was built upon the advocacy contained in the Shut Out Report, which was a direct result of Australia signing and ratifying the Convention on the Rights of Persons with Disabilities. The NDIS was not designed for every person in Australia with disability to be a participant but the original Productivity Commission report did have a number of policy initiatives in it that have not been picked up, which would change the relationship of the NDIS with other policy systems. For example, a National Injury Insurance Scheme. Concurrently with the NDIS there a number of catastrophic injury schemes that run in Australia. For example, iCare in NSW. It was never intended that the NDIS would be the only source of support for people with disability – but it has always been intended to create significant change.
However, the NDIS is built upon a foundation. Previously this was referred to as the National Disability Strategy. The Strategy ran from 2011-2021 and was entered into by all levels of government. On International Persons with Disabilities Day last year (3 December 2021) it was replaced by Australia’s Disability Strategy 2021-2031.
But the National Disability Strategy had profound implementation issues. The need to measure outcomes was never given priority and although there were some successes there were challenges too. The present Strategy is better but time will tell whether opaque indicators of success chosen by all levels of government can drive change or whether governments are willing to enact discrimination law and other types of law reform. Good policy is not just about the amount spent or saved. Tangible outcomes matter. Economic models can be profoundly affected by underlying assumptions.
Today I’m going to focus upon why human rights matter within Australia’s Disability Strategy though the premise of my personal experience of disability but also some of the interactions I have as Disability Discrimination Commissioner at the Australian Human Rights Commission.
Why Human Rights Matter
I sit in front of you today behind my computer screen because of a spinal cord injury that occurred in 1995 playing rugby union. I was 16. I was still at school. But I rehabilitated in an adult hospital. My fellow inmates, for want of a better expression, were from a range of backgrounds.
One man was from an aboriginal and torres strait islander background, another man was for a low socio-economic background, another man had grown up surrounded by people who have been incarcerated. We had a variety of injuries and I was the youngest, but although people would often think our trajectories would be the same there were some critical areas of difference.
A little over 27 years later, I have learnt that both disability is diverse but also the people who have disability are diverse. This difference in the underlying characteristics of individuals and their life circumstances has a critical impact on how that individual interacts with society. It can be easy to suggest that two people with similar disabilities will interact with society in the same way. This is not the case.
Although I was only young in 1995, I saw the different societal expectations existed. At worst, I would have received some form of education. This differed from the other individuals who were expected to live in the community with a high level of independence despite not having any realistic options regarding housing or employment. My parents’ house was luckily one story, close to the hospital and school, and was quickly made accessible. I was given opportunities that they were not.
Sadly, all of my fellow inmates went to live in an institution that still exists. Some of them remained there for years before they could find adequate housing and home support. They could not work, study or train in any meaningful way. Perhaps unsurprisingly, many of them developed mental health challenges, which would probably be readily treatable in today’s society, but at the time were looked upon as a lack of motivation or willpower. Once these challenges arise it is difficult to re-start your life.
Human rights matter because we need the services and supports for everyone with disability. This includes education and training, employment options, advocacy services and support for decision-making. Models of inclusion create transparency.
An awkward aspect of the debate concerning disability policy today is the likelihood of a similar outcome occurring even though funding levels have increased significantly. We still have profound shortages of accessible housing and care in the community. It is twenty-two times more expensive to modify a house to make it accessible once built and only 5% of houses are accessible but to modify a house you also need available tradespeople. Newspapers are filled with stories of people with disability remaining in hospital waiting for services in the community. This issue has been known about for some time – but has been exacerbated by the pandemic. Not every person with disability lives in social housing or when they reach a certain age wants to live in aged care.
The Committee on the Rights of Persons with Disabilities, which is comprised of international experts on disability policy, recommended in 2019 that Australia create mandatory accessibility requirements in the National Construction Code, New South Wales, Western Australia and South Australia have not followed the recommendation. States are bound by the CRPD, but this appears to be of no consequence.
There are strong and differing views on the economic cost of accessible housing. Discount rates, market value and avoidable care costs are three key issues of contention. They are issues that people with disability do not readily have access to information to assist them to make arguments in regard too. But what cannot be disputed is the dignity and safety of living in the community surrounded by family and friends. What also cannot be denied is a well-designed house means you are more independent and need less care and support – which means others can be assisted by the limited supply of workers.
Disability Discrimination Commissioner and Australia’s Disability Strategy
Over 3 years ago, I took on the job as Disability Discrimination Commissioner at the Australian Human Rights Commission. It is a job that is a privilege because you get the opportunity to make a difference in people’s lives, but it is a job not without its challenges as you are often not the final decision-maker. Instead, you need to persuade people to change their views. It is important to convince people of the underlying issues faced by people with disability in a way that is respectful, but often enables that individual to change their viewpoint without losing face in the eyes of others.
When I took the job, one of the first things I was required to do was to accompany a youth delegation from Australia to the United Nations in New York. The event that we were required to attend was the Conference of State Parties, which is an international event run as a result of the CRPD. The idea behind the Conference of State Parties is to capacity build amongst the disability community internationally to ensure that each country operates at best practice. As an idea, it has the chance of creating real difference provided the appropriate decision-makers and people who decide upon policy are in the room. At the event, long-term connection are made and you get an understanding on who shows leadership on certain issues.
No country is perfect, and Australia has some things to be proud of. But it is obvious if you do not measure outcomes across all areas of society then change does not occur. Well-designed data collection mechanisms (with appropriate safeguards) informed by the needs and concerns of people with disability are a human rights issue. These systems should require large businesses to participate too.
It is also apparent that education, training, transport, technology, healthcare, employment, support for decision-making, independent monitoring and community awareness raising are key issues for people with disability, but they are best undertaken when informed by the principles underpinning the CRPD. Segregation is a gateway to violence, abuse, neglect and exploitation of people with disability now and in the future.
Royal Commissions exist because of policy failures not successes. In Australia, a critical issue in the Disability Royal Commission, but also the Aged Care Royal Commission, is the need to reduce segregation in the community.
I raised earlier the need for a whole of country engagement on disability policy. To remove the “us” and “them” and try to create a “we”.
One of the areas I often look at when deciding upon areas to advocate on for particular issues relating to the rights of people with disability is literature relating to how to influence society to change its views. In a public health setting, there is some great work being done in tracking how issues relating to smoking, HIV, seatbelts and mental health have been advanced.
It is suggested that you need to look at issues at a structural; organisational and/or individual level. The structural level concerns communitywide policies like the legal system, organisational issues concerned the attitudes of individual employers or institutions like universities, and the reference to individuals refers to the knowledge or experience of individuals relating to an issue.
To be successful any campaign must be sustained and have taken place for approximately three years. I have hopefully touched upon, at the least, the individual level today.
I am also hopeful, although a bit apprehensive, we do not need to wait until 2025 for human rights considerations, such as inclusive equality, to strongly inform disability policy in Australia. Time will tell.