Public hearing 31 - Vision for an inclusive Australia - Day 1

CHAIR:  Yes, good morning, everybody. And thank you very much for coming to the ceremony that we're about to see and participate in. 

SHANNON RUSKA:  (Jagera language spoken.) Ladies and gentlemen, my name is Shannon Ruska and I'm from the Jagera and Turrbal people of Brisbane city, well, rather the Turrbal clan of the Jagera language speakers. My great great grandfather and grandmother was one of the   when the first people come to Brisbane city that they had come across and his name was   he was given a king name.  His name was King Sandy of Brisbane. His wife was from the Breakfast Creek tribe and her name was Sarah Naewin. And Sarah Naewin was from there and also Nambour. They had a daughter called Sarah and her son was actually the Messenger Man. 

Now, we talk about Welcome to Country. We ask ourselves whether we should embed this into Australia and into every ceremony that we do. And I see it that if we look at Australian history, where do we start that history, and if we're to walk together, whether it's a bi cultural nation or one nation, that we should incorporate the both cultures together and show the rich history of who we are. It makes us stronger as a people. 

A Welcome to Country is not something that event organisations and the Aboriginal people started in the past 10 or 20 years. It's something our families have been doing since the beginning of time over 65,000 years of history in this great land.  And many languages are spoken across the nation. Over 500, in fact. In the modern day, I speak six different languages, one of them being English and the surrounding tribes of South East Queensland. 

Now, in order to be able to travel from country to country in the old method, that grandfather that I'm talking about, his name was Grandfather Mookin.  A lot of people go to university to get their doctorate degrees. Well, our bush doctor degree   and I often ask the anthropologists   some don't like it, but I ask the anthropologists, when you go for your doctorate degree and your archeology degree, who did you get your information off?  And that information of that man or woman is actually the doctor of this land. Because they know everything.

So, that grandfather, he was fully initiated. Scarifications on the chest, and that is when you get your doctorate degree in Aboriginal culture. He would know everything.  He was what they called a lore man. But he wasn't just an Aboriginal lore man.  He carried these message sticks   he was an Aboriginal lore man by carrying these message sticks from country to country, speaking over 15 different languages and being able to cross those borders.

He was an untouchable of the tribe. No other tribe could spear him down.  Us to go alone without him travelling over with that message stick, we could be speared down. Modern day, we ring one another up by mobile phone and ask for permission. Those permissions are still important even in the modern day when we travel from country to country and when we conduct business on country. We must ask the permission of the authority of the landholders or the landowners, and that's why we have the Welcome to Country. 

You'll use a   you might have got it from us   a passport or visa.  We had the message stick which had carvings or paintings on it, and that gave reason why we were travelling from country to country. And that old Grandfather Mookin, Charlie Moreton, he was the messenger man. But as I mentioned earlier, he wasn't just in one law.  In his time, he lived by two laws. Up at Barambah, he became sworn in as the first Aboriginal Lord Mayor possibly   and still research continues   in Australia, my grandfather was. 

He was sworn in by   and you probably drive across the bridge, William Jolly. William Jolly was the then Lord Mayor of Brisbane City Council, Brisbane region, and he's the one that swore him in.  So we share that history of walking in the two worlds even in the modern times. We have the ancient way and we have the new way.

Today we're doing a water blessing. Now, a water blessing or a smoking ceremony   which we're not going to do a smoking ceremony, we'll set fire alarms off if we do that   but the water blessing is a way that we do as a blessing and a cleansing, so to speak. Many cultures across the world in your backyard, if you research your backyard, your people too no matter where you came from in that ancient time, did either fire, water, smoke, and those were methods to be able to cleanse the path for new beginnings. 

I'm going to introduce Jono Barney.  Jono Barney is from the Butchulla people,    and Gamilaraay, yep, so a few tribes across Queensland and northern New South Wales who's going to play didgeridoo. Jono grew up with our people in a well known town within Brisbane called Inala. So if you know Inala, a lot of our families grew up around there, and Jono's family was one of them. 

(Sings in Aboriginal language). 

As a senior song man of the tribe of the Jagera people, of the Turrbal clan, it's my responsibility to carry the ancient ways. See, in a university, you learn from the libraries and the teachers. In the bush we learn   even in the city now, we learn from the ancient teachers.  And our stories are some of the most ancient in the world. And the stories are in a song. Every song that we sing.  So we know songs or I know songs from 65,000 years ago. I know songs from 220 years ago. Those songs adapted over time. Such as one at Amity Point, the one at Amity Point about the sovereign ship that went down. 11 of our grandfathers swam out and saved those people in those roughest waters out there. We came in and we danced it, just up the road at the Botanic Gardens.

My job today is to make songs of today so that our history will be remembered. Those broken ties are through the   they call them song lines.  They're also through story lines as well.  (Sings in Aboriginal language). 

Here it is my home    still remains. (Sings in Aboriginal language). 

Thank you for having us and welcome everyone.

CHAIR:  Thank you very much. I would like to thank Shannon and Jono for that ceremony. As you probably know, the position of First Nations people with disability has been a very, very important part of this Royal Commission and a number of hearings have been directed to the particular position of First Nations people with disability. It's also very important that in all of our work, we acknowledge the traditional custodians of the lands upon which we sit and upon which we work, and I thank you today for the ceremony that enables us to make that acknowledgement at this hearing. Thank you very much indeed. 

SHANNON RUSKA:  Thank you. Thank you very much.

CHAIR:  Good morning, everybody. I welcome everyone who is attending this Public hearing which is being held in the Royal Commission's Brisbane hearing room. I also welcome those who may be following the hearing and the proceedings on the live stream. This is the 31st Public hearing of the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. The subject of this hearing is a Vision for a More Inclusive Australia. As those in the room can see, this is a hearing in which all six Commissioners are participating. 

The hearing, which is the final hearing for 2022 of the Royal Commission, will be conducted over five days this week. Joining me at the hearing are Commissioner Barbara Bennett PSM on my extreme left, Commissioner Dr Rhonda Galbally AC on my extreme right. Commissioner Andrea Mason OAM to my left, Commissioner Alastair McEwin AM two Commissioners away on my right, and Commissioner John Ryan AM on my immediate right. This is the first hearing since the ceremonial opening of the Royal Commission on 16 September 2019 in which all Commissioners have participated. 

The schedule for this week is very full. Senior Counsel Assisting the Royal Commission, Ms Kate Eastman AM SC, will provide details in her opening statement of the witnesses who will be giving evidence in one form or another. I mention at the outset one procedural matter. My practice to date when the witness has concluded their evidence has been to invite Commissioners participating in the hearing to put questions to the witness. As far as I'm aware, this practice has not been routinely followed by any other multi member Royal Commission in Australia. 

Given the crowded schedule and the presence of six Commissioners, it's not practical to follow that usually practice. Commissioners instead have been invited to put to Ms Eastman any questions they would like to ask and she, of course, will take those questions into account in her examination of the witnesses. If Commissioners have particular witnesses to clarify the evidence of certain witnesses, then that can be done. 

As this is the final Public hearing of the year and the Royal Commission is moving towards the completion of its work, I want to take the opportunity of saying something about what we have done and what remains to be done. The Royal Commission was established on 4 April 2019 when the Governor General issued Letters Patent to the Chair and the five Commissioners who are present in the Brisbane hearing room today. The Letters Patent contained the Terms of Reference for the Royal Commission. These set out the responsibilities of the Royal Commission in some detail. 

The paragraph of the Terms of Reference of particular relevance to this Public hearing requires the Royal Commission to inquire into, and I quote:

"What should be done to promote a more inclusive society that supports the independence of people with disability and their right to live free from violence, abuse, neglect and exploitation."

The original Letters Patent required the Royal Commission to report by 29 April 2022, that is, seven and a half months ago. It became apparent in 2020 that three years would not be enough to allow us to complete our work for two principal reasons. First, the breadth of the Terms of Reference   they are very broad indeed   and, second, the significant impact of the COVID 19 pandemic on our work, once the virus made its appearance in Australia in February 2020. We had hoped that with the extension COVID 19 would disappear.  Unhappily, that has not proved to be the case. 

In any event, for those reasons, we requested the Australian Government to extend the date for reporting until 29 September 2023. This request was ultimately granted. We therefore have precisely nine months and 17 days before our report is due. By that time, the Royal Commission will have been in existence for four and a half years. By a process of subtraction, you will deduce that the Royal Commission as of today has been in existence for three years and just over eight months.  During that time, an enormous amount of work has been completed and a vast body of evidence and information compiled. A very brief survey of that work will give an idea of the magnitude of the task facing us in writing and presenting the final report in accordance with the amended Terms of Reference. 

We have, as I have said, now held 30 Public hearings. They have occupied roughly 150 hearing days.  At an average of about 90 transcript pages per day, the record of oral evidence of the hearings runs to about 14,000 pages. The multiple documents that have been admitted into evidence amounts to tens of thousands of pages, and by documents I include evidence that has been taken in very many different forms such as video recordings, photographs, artworks, audio tapes and so forth. 

The Public hearings have covered an extraordinary range of subjects reflecting the breadth of the Terms of Reference. Under the guidance of Ms Eastman, the Senior Counsel Assisting the Royal Commission, Counsel Assisting have employed many innovative techniques to ensure that witnesses, especially witnesses with lived experience of disability, have been able to give their evidence safely, with support and in a manner that avoids the risk of re traumatisation when people recount their often harrowing experiences. 

Our counselling team have played an indispensable role in providing support to witnesses with disability before, during and after giving their evidence. This week's hearing on a Vision for a more inclusive Australia is very important. But it's also important to appreciate that virtually all our work is directed to the goal of bringing about a more inclusive Australia for people with a disability. 

This can be seen in the topics that have been addressed at Public hearings. The list includes the following:  pathways and barriers to employment; health care and services for people with cognitive disability; barriers to accessing safe and inclusive education; the use of psychotropic medication as a response to so called behaviours of concern; the experiences of people living in group homes; the experiences of people with cognitive disability in the criminal justice system; preventing and responding to violence abuse, neglect and exploitation in disability services; the experience of women and girls with disability and LGBTQIA plus  people with disability, with a particular emphasis on family, sexual and domestic violence. 

We have conducted forensic investigations into the conduct of particular service providers with a view to identifying systemic issues. The experiences of people with disability during the COVID 19 pandemic and during the early stages of the vaccine rollout. Making the human rights of people with a disability a reality in Australian law, policies and practice. The experiences of First Nations people with disability and their families in contact with Child Protection systems. The operation of the NDIS for First Nations people with disability in remote and very remote areas. 

The experiences of violence, abuse, neglect and exploitation of people with disability from culturally and linguistically diverse communities. Substituted and supported decision making and guardianship regimes. Violence and abuse directed at people with a disability in public places. That is not a complete list but it gives an indication of the breadth of coverage in the hearings in conformity with the Royal Commission's Terms of Reference. 

The general practice is that after each hearing is concluded, Counsel Assisting the Royal Commission prepares written submissions. These are provided to parties that have been given leave to appear at the hearing, most often but not exclusively the Commonwealth or one or more of the States or Territories. The written submissions analyse the evidence, often in very great detail. Depending upon the subject matter of the hearing, the submissions may propose factual findings and suggests that the Royal Commission adopt certain recommendations. 

Parties with leave to appear at a hearing always have the opportunity to file written submissions in reply, and that is in accordance with the requirements of procedural fairness that govern the operations of the Royal Commission.  Mostly parties with leave to appear avail themselves of that opportunity, and many submissions in reply have been filed. Most submissions that have been filed to date, Counsel Assisting's and submissions in reply, have been uploaded to the Royal Commission's website and can be seen there. All submissions will be taken into account in drafting the Royal Commission's final report. 

Commissioners who have been sitting at hearings have published their own reports at 10 Public hearings. These record the findings of the Commissioners who participated in the particular hearing and, in some cases include recommendations.  Two of the Commissioners' reports, those deal with the Australian Government's early responses to the COVID 19 pandemic as it affected people with disability, were presented to the Governor General and tabled in the Australian Parliament. The Australian Government accepted all but one of the recommendations in those two reports. 

The Royal Commission decided very early on that we would invite submissions from anyone interested in our work, but particularly from people with disability themselves. Our Engagement Branch has taken great pains to ensure that the submissions process is as flexible and accessible as possible. Submissions have been made in many different formats. As many of those of you who are following or have been following the Royal Commission will know, the closing date for submissions is 31 December this year, just a couple of weeks away. As of today, we have received 6357 submissions. By the end of the year, we expect to have received about 6500 submissions, an extraordinary number. 

To encourage contributions to the work of Royal Commission, we published 14 issues papers on a variety of topics within the Terms of Reference. They've prompted 710 responses, many of which are very thoughtful and very detailed. The 14 issues papers included one on Promoting Inclusion that was published in December 2020. The issues paper posed questions that will be explored in this hearing. It generated 74 responses. The responses were summarised in an overview that was published in October 2021. Ms Eastman will shortly refer to the themes identified in the overview. 

In September 2019, the Royal Commissions Act was amended at our request to authorise individual Commissioners to conduct private sessions with people wishing to tell their stories to the Royal Commission confidentially and with appropriate support. Almost 60 percent of the people who participated in private sessions have been people with disability, most often relating their own experiences for violence, abuse, neglect or exploitation.  Most of the remaining participants in private sessions have been family members or supporters of people with disability. To date, the Royal Commission has held 1505 private sessions. We will be continuing private sessions in 2023 and expect to conduct about another 400 private sessions before the Royal Commission ends. 

I want to express my appreciation to my colleagues present today, who have willingly borne a very large, very demanding and often emotionally taxing workload to ensure that eligible people who have registered and wish to engage with the Royal Commission through a private session have the opportunity to do so. 

I haven't touched upon the many other activities of the Royal Commission. They include, for example, extensive engagement with disability representative organisations and people with disability all over the country. We have implemented a research program that has resulted in 16 publications on a variety of topics. All 16 papers, reports, can be accessed on the Royal Commission's website. Those who have been responsible for projects have been asked, wherever possible, to engage closely with disability   people with disability and experts and researchers to inform the research, design of projects and the interpretation of data. 

Where to now? Well, as I have indicated, submissions close on 31 December but we will continue to process all submissions received by that date. Private sessions will continue in the manner that I have indicated. We plan to hold two more substantive hearings in 2023. One will be a wrap up hearing involving service providers. We shall be recalling some witnesses from service providers whose actions have been scrutinised at Public hearings held to date to determine the progress they have made in advancing the issues uncovered in the hearings. The final substantive hearing will hear evidence about a particularly troubling case study.

The major task confronting the Royal Commission now is drafting a multi volume final report which, of course, will contain recommendations. This is a major undertaking which presents a formidable challenge. It is critical in the interests of people with disability that the report set out a template for transformational change that is achievable. This week's hearing will provide insights into some of the changes that will be needed to bring about a more inclusive society that supports the independence of people with disability and their right to live free from violence, abuse, neglect and exploitation. I shall now take appearances. 

MS EASTMAN:  Commissioners, I appear for this Public hearing with Mr Andrew Fraser, with Ms Simone Fraser and with  Ms Avelina Tarrago.

CHAIR:  Thank you, Ms Eastman. I will take the appearances for the Commonwealth of Australia.

MR DIGHTON:  Thank you, Chair.  My name is Dighton. I appear with Mr Hodge KC for the Commonwealth of Australia.

CHAIR:  Thank you, Mr Dighton.  The State of New South Wales?

MS FURNESS:  My name is Gail Furness, and I appear for the State of New South Wales, instructed by the Crown Solicitor's Office.

CHAIR:  Thank you, Ms Furness.  The State of Queensland?

MS McMILLAN:  Yes.  Good morning, Chair, McMillan, initials KA, KC. I'm instructed by Crown Law for Queensland.

CHAIR:  Thank you, Ms McMillan. The State of Victoria?

MR CHESTERMAN:  Chair, Scott Chesterman appearing on behalf of the State of Victoria.

CHAIR:  Thank you, Mr Chesterman. I think that concludes the appearances. If there is any other appearances I'll take that now. If not, I shall ask Ms Eastman to make her opening statement. 

MS EASTMAN:  Thank you, Chair. Well, Counsel Assisting acknowledge the traditional custodians on the land on which we are meeting today and across Australia. We thank Shannon and Jono for the water cleansing ceremony this morning. We pay our respects to Elders, past present and emerging, as well as to all First Nations people contributing to and following this Public hearing. 

Chair, as you've said, the Royal Commission's Terms of Reference are broad and require the Royal Commission to undertake an inquiry to identify, and relevantly for this hearing, what needs to happen to promote a more inclusive society that supports the independence of people with disability and a right to live free from violence, abuse, neglect and exploitation. 

The Royal Commission must make recommendations arising out of its inquiry, including any recommendations about policy, legislative, administrative and structural reforms. In 2023, the Royal Commission will need to carefully consider all of the evidence that it has heard at Public hearings and information it has received in the thousands of submissions at private sessions, during community engagement, together with its review of past inquiries and reports and the research work commissioned during the life of the Royal Commission. 

This Public hearing will focus on promoting a more inclusive society. Commissioners, as we have prepared for this hearing we have reflected on the stories you've heard about the lives of people with disability in the past and at present. We also think about all children born on 12 December 2022. Some have been born and some are yet to be born during the course of the day. Some children will be born with disability. Some children may acquire a disability during their lives.  And some will live without disability. 

What should the children with disability and their families expect in five, 10 or 50 years? What does the future hold for them? Over their lives, will they experience an inclusive society? Will Australia ensure equal opportunity, equal access and support a child with disability to realise their human rights in community with all children? 

With that thought in mind, we will ask people with disability about their vision on inclusive society that supports the independence of people with disability and their right to live free from violence, abuse, neglect and exploitation. This hearing will examine how the vision of an inclusive society for people with disability may be realised. This week, you will hear from people with disability about their vision for the future, and the extent to which an inclusive society requires a commitment to change and action to bring about change. 

Their visions may be expressed in different ways with different emphases and focus, but there's a commonality you will hear run through the evidence. Disability is part of human diversity. And the witnesses will tell you that people with disability should live, learn, work and engage alongside people without disability. 

A vision for inclusion is also informed by the Royal Commission's broader work, particularly its research work and the submissions. In December 2020 the Royal Commission sought submissions in response to the Promoting Inclusion issues paper. Chair, you've mentioned that earlier. The submissions in response to the issues paper addressed the meaning of inclusion and identify the following core characteristics of an inclusive society. It is a society that recognises and enforces human rights, adopts meaningful practices of co-production and co design, embeds universal design to ensure full accessibility, provides culturally competent and safe services, recognises the social model of disability and promotes a sense of belonging. 

Inclusion facilitates belonging. Inclusive practices should ensure people with disability feel safe, valued, respected and welcomed. Inclusion enables a person to live a life with dignity and autonomy. Inclusion is an ongoing process, and an inclusive society is a society that engages in continuous processes of relationship building, inquiry, consultation, action and re evaluation. 

Inclusion also requires challenging ableist attitudes and committing to interventions to change attitudes and behaviour. Ableist attitudes include low expectations, pity, paternalism, protectionism or fear of people with disability. Ableist attitudes towards people with disability may be overt or implicit. Ableist attitudes may manifest in behaviours that cause prejudice, stigma, discrimination and the use of harmful language. 

At the recent Public hearing 28 concerning violence and abuse experienced by people with disability in public places, Commissioners, you heard about the direct relationship between negative attitudes and the treatment of people with disability. Negative attitudes and behaviours continue to be key barriers to inclusion for people with disability. And in the issues papers concerning rights and attitudes, the Royal Commission said this:  that it wanted to understand how better rights awareness and positive attitudes towards people with disability can influence laws, policies and practices that reduce the risk of exposure to violence, abuse, neglect and exploitation and lead to more inclusive societies. 

Some other barriers to inclusion are very large:  poverty, unemployment, health inequities, homelessness, family violence, social isolation and discrimination across Australia drives social exclusion and prevents inclusion for people with disability. Some of these barriers are longstanding and are a direct result of the way people with disability have been culturally, systemically and legally excluded within the Australian community. 

Commissioners, you have heard in previous Public hearings and in submissions, private sessions and from the research work about the experiences of people with disability who are separated from their families and communities and hidden away for life in large residential institutions. In her research report published on the Royal Commission's website, Disability in Australia:  Shadows, struggles and successes, published in 2021, Associate Professor Lorna Hallahan traced the history of the people with disability, segregation and the movements for change for people with disability in Australia. 

She addressed the importance of confronting the past and why change has come slowly, especially for some people with disability. Professor Hallahan said this:

    "People with disability and their close allies can rightly ask of their fellow Australians, do you truly value us as members of this society? The record of exclusion, discrimination and maltreatment evidenced across time and into the present suggests that this question cannot receive an unequivocal yes. Until that time, the history reliably informs us the struggle for recognition, rights and a decent valued lives by those with disability and their close allies will confront the long exclusionary shadow and its contemporary manifestations."

That's at page 105 of the report, and it's the last and concluding paragraph. 

We acknowledge the work done by disability advocates, leaders and representative organisations to remind us about the importance of learning from the past wrongs and guarding against continued segregation and isolation. The road to inclusion must also be a road that secures the rights of people with disability. The Convention of the Rights of Persons with Disability, the CRPD, informs and guides the Royal Commission's work on a vision for the future. The CRPD has been a constant theme, and you will recall examining how the CRPD could be better implemented into Australian law and practice at Public hearing 18 last year. 

You've also referred to the CRPD in your interim reported released on 30 October 2020 and, Commissioners, you said this:

    "We seek to translate the human rights recognised in the CRPD into practicable, sustainable policies and practices that will promote the rights of people with disability to live free from violence, abuse, neglect and exploitation."

You also acknowledged in the interim report this:

    "The CRPD articulates values and standards by which people with disability should be treated and informs community values and attitudes. The human rights framework assists in understanding why people with disability experience violence, abuse, neglect and exploitation and will inform the recommendations we will make."

So, this hearing will be grounded in a human rights framework and examines the link between human rights realisation, attitude change and inclusion for people with disability. 

So, turning to this week's hearing, we propose to conduct this hearing in three parts. The first part will be led by people with disability, sharing their sense of what inclusion means to them and their vision for an inclusive Australia.  Summer Farrelly, who's 15 years old, will set their vision for an inclusive Australia and their hopes and dreams for the future. Summer is an advocate and is focused on educating the educators on disability in school settings and sharing their lived experience on how school impacts upon people with disability. Summer calls for a future where everybody can contribute and participate in society as their authentic self without having to change who they are to be accepted in community. 

Dr Samarra Toby, together with her husband Massey and their son Arty, a young person with disability, will provide a First Nations intergenerational perspective on inclusion, and their expectations for a future and the importance of person centred approaches to health, education and communities for people with disability. 

Chloe Hayden, who will be known to many people, is an actor and writer and an advocate with disability. Chloe will speak to disability leadership, disability pride, attitude and behaviour change and the role of traditional and social media in awareness raising and representation. 

Dylan Alcott ACO, also probably known to many people, will share his perspectives and reflections informed by his time as Australian of the Year on inclusion, attitude change and how an inclusive future for Australia can be meaningfully realised. 

And later today you will hear from Mr Gerard Quinn. He is the UN Special Rapporteur on the rights of people with disabilities, and he will address the development of a rights based model which enables progressive realisation of human rights under the CRPD, and he will also speak to initiatives and strategy that is have facilitated this change internationally. 

When we close the hearing on Friday, you will hear from Julia Hales. She's part of a program called Leaders for Tomorrow, but she's perhaps best known for her work on the stage and in the media. She has made the documentary called The Upside which was shown on the ABC and still remains on iView for those who wish to have an opportunity to see it. Julia is a writer and she's been the star of a stage production, You Know We Belong Together, which has played not only in Australia but also travelled overseas. 

So I'll move to the second part of the hearing which has a focus on models and pathways to inclusion.  The second part will focus on how to build and sustain inclusion. This part of the hearing will examine innovative models and pathways to enhance inclusion, including changing attitudes towards disability and reforming mainstream systems to be more accessible and inclusive. This part of the hearing will address several key themes, all of which are interlinked including, first, how co design, coproduction, disability leadership and advocacy can increase inclusion and belonging. As part of this theme, you will hear evidence from the Variety Just Like You program, which is an example of peer led training where people with disability engage with primary school students to develop understanding, acceptance and inclusion. 

Then you will hear from Sherrie Beaver from Expression Australia. Sherrie will tell you about the Deaf Queer Rainbow project as an example of peer support, role modelling and disability leadership. The project also works to build greater inclusion at an interface by improving the accessibility of LGBTQIA plus services for Deaf and hard of hearing people and including awareness of Deaf services and organisations to support access for LGBTQIA plus people. 

Margherita Coppolino, a disability leader inclusion consultant, as well as accredited trainer, mediator, auditor and company director will give evidence about the importance of different forms of advocacy, the effectiveness of the Disability Discrimination Act and Disability Standards as levers for change in achieving substantive equality, and the importance of promoting opportunities for people with disability to participate in governance, leadership and decision making, whether it be in the boardroom or in our parliaments across the country. 

We'll also examine representation, and this hearing will consider the power of the media, arts and the sport community to challenge negative attitudes and increase inclusion. We will hear evidence from Tracey Corbin Matchett   she's the Chief Executive Officer of Bus Stop Films   together with students of Bus Stop Films Accessibility Film Studies program, Evie and Breanna. 

We will hear from Kathleen O'Kelly Kennedy and Nikaiya Payne, representative from The Outback Academy Australia about the Red Dust Heelers, a program that uses sport to build inclusion and leadership in First Nations community. Bill Cooper and Kyran O'Connell, who use their TikTok channel under the name The Brother Boys, use that work to challenge negative attitudes about disability, and they have prepared some pre-recorded evidence for the Royal Commission. 

We'll also focus on universal design, accessibility and innovation. We will examine the benefits of universal participatory and inclusive design and the context in which these design principles can be applied to facilitate inclusion. You will hear from Dr Manisha Amin, the CEO of the Centre of Inclusive Design, about work her centre is doing to develop inclusive systems and spaces. You will also hear from Pete Horsley from the Remarkable Tech, an initiative which focuses on disability, technology innovation, leadership and entrepreneurship. 

We will also examine the pathways. We will examine pathways to more inclusive settings, including reforming mainstream settings. You will hear evidence about the Flinders University's Up the Hill project from Dr Fiona Rillotta which seeks to support people with cognitive disability to participate in social and educational aspects at university. Flinders University is currently developing a diploma program as a pathway for project participants to try and address the barriers traditionally faced by people with cognitive disability accessing higher education. 

You will hear from Harry Sillett from Vanguard Laundry about the model for supported transitional opportunities for people with disability traditionally excluded from the labour market. Mary O'Hagan, the Executive Director of the Lived Experience Branch in the Victorian Department of Health will give evidence about the benefits and challenges of building consultation, co design and coproduction with people with disability into government policy making projects. 

Much of this hearing will focus on attitudes, and you will hear about this important topic with respect to what actions are needed to change ableist attitudes, the relevant levers for change, and you will hear evidence from Associate Professor Paul Harpur and Angel Dixon OAM. 

The final part and the third part of the hearing focuses on accountability and measuring progress towards inclusion. For the third part of the hearing, we will examine responsibility and powers of governments to realise the vision and lead inclusion to the development and implementation of policies and practices. We will also examine how each of the actions are implemented and will be evaluated. 

In preparation for this hearing we ask the Australian Government, state and territory governments about the measures taken in each of their jurisdictions to give effect to the CRPD and their progress with the Australian Disability Strategy which was launched in December last year. I'll say more about this on Thursday before you hear from representatives of the Australian Government and the Queensland Government. 

As always, we give our content warning. The focus of this hearing is to listen to and understand the experiences of people with disability. Some people may finds the evidence distressing, and you have now on the screen the contact numbers to receive assistance and support. We encourage everyone watching, whether by the web stream or here in person, to be mindful that the topic might trigger and cause distress, and we encourage everyone to seek and receive support in that respect. 

So finally, Commissioners, before we break, I think that now may be the 30th time that I or one of my colleagues have provided this reminder, but it remains important. I remind everyone following this proceeding, be it in the room or on the web stream, that there are provisions in the Royal Commissions Act that has the very clear object of protecting witnesses who give evidence before the Royal Commission.  In particular, I draw attention again to section 6M of the Act which provides that:

    "Any person who uses, causes or inflicts any violence, punishment, damage, loss or disadvantage to any person on account of a person having appeared as a witness or given evidence or produced documents to the Royal Commission commits an indictable offence."

Thank you, Commissioners. I think we were now going to adjourn for morning tea, and our first witness after morning tea will be Summer Farrelly.

CHAIR:  We are seven minutes ahead of schedule so do you want to have a break of 22 minutes or 15? 

MS EASTMAN:  Probably 20 minutes, if that's convenient.

CHAIR:  We will resume, then, at 11 am Brisbane time. 

MS EASTMAN:  Chair, just before you do that, for people who are in the room   and I'm sorry those on the live stream can't see this, but we have also displayed in the Royal Commission offices here a lot of artwork that we've received from people with disability, including young people, speaking to their vision of Australia that appears in the form of artwork and other stories. So, I'd encourage anyone who's in the room with the 20 minutes or so to take a look at the artwork that was shared in the Royal Commission's premises. Thank you, Chair.

CHAIR:  The break will now be 21 minutes. 

ADJOURNED 10.38 AM 

RESUMED 11.02 AM.

<SUMMER FARRELLY, CALLED

CHAIR:  Yes, Ms Eastman. 

MS EASTMAN:  Thank you, Commissioners. So, I'm very happy to hand over to Avelina Tarrago, who you will see sitting with our witness and next to our witness in the witness box.

CHAIR:  Summer, I would like to thank you on behalf of all the Commissioners for coming to the Royal Commission today to give evidence in Brisbane. We're very grateful to you, and we are very much looking forward to the evidence you're going to give to us. If at any time you want to take a break, just let us know and take your time with the evidence you're giving; okay? Thank you very much. Yes, Ms Tarrago will now ask you some questions. 

<EXAMINATION BY MS TARRAGO

MS TARRAGO:  Thank you, Chair. Before I start, Commissioners will hear from Summer. Summer's pronouns are they/them, and it's their preference to be addressed as Summer.  Summer is a 15 year old young person and is interested in animal behaviour and connection. Through their love of animals, they have connected an animal assisted learning program called Chickens to Love. And through that program, they educate others on how to incorporate animals into learning environments for students who may benefit. 

Summer lives with Autism, ADHD, PTSD, anxiety, reactive depression and dyslexia. They live in Queensland with their family, and their mother and two brothers also live with disability. Summer is currently home schooling, and their mother has supported them to create an interest based learning program which includes enrolment into a Bachelor of Zoology at the University of New England by distance education, which is due to commence next year. 

They are an advocate and are focused on educating the educators on supporting young people with disability in the classroom. Commissioners will hear evidence from Summer on how they see an inclusive Australia and their hopes and dreams for the future. They have also provided the Royal Commission with a poem submission on a previous occasion about their experiences at school, and Summer has written a statement on their vision for an inclusive Australia which appears at tab 31 1 of the Tender Bundle, and Summer will read that later on in evidence. 

Now, Summer, earlier you took an affirmation before we started. 

SUMMER:  Yes. 

MS TARRAGO:  And your name is Summer Farrelly, and your pronouns are they/them. And you are 15 years old and live in Queensland. And you have a love of animals. What is the best thing about animals that you love?

SUMMER:  I like the connection that you can build with them and the unconditional love they give and relationships that you can build. And it's just the love that you can get and on top of that it's very beautiful. 

MS TARRAGO:  And today you're joined by Joker, a black Labrador. 

SUMMER:  Joker is my    yes. 

MS TARRAGO:  And as I mentioned in the intro, you're being home schooled at the moment and you're about to start a Bachelor of Zoology.  How did that come about? 

SUMMER:  I really wanted to   and still want to study animal behaviour, and that is something that's included in a Bachelor of Zoology.  So I'll be starting that next year and, yeah, I've just always wanted to work with animals. So, I really like the idea of being able to do that and especially because I originally did a Cert II in Animal Studies which I couldn't complete because I'm not old enough to do a work placement. So, I couldn't actually finish it because I couldn't do my work placement. 

MS TARRAGO:  And is that because of your age was one of the restrictions?

SUMMER:  Yes, I couldn't do any work placement anywhere because I had to be over 16, which I'm 15. 

MS TARRAGO:  And how many subjects are you going to be taking as part of your university degree in addition to your home schooling? 

SUMMER:  I'm doing part time first just to see how uni is, so I think I'll be doing two at first. 

MS TARRAGO:  And what's the benefit of have been interest based learning where you can incorporate these other aspects like doing a university degree?

SUMMER:  It's a lot more engaging to learn that way when it's interest based, and it's a lot easier to do stuff, because, one, it is more engaging but it is easier to focus on and get the work done and there's more of a drive to actually get stuff done, because focus never a strong suit of mine. Which will probably become apparent through my talking. But when it's something animal related, I'm always there or I always bring the topic of conversation back to animals, and being able to do all of my subjects based on that, I've been able to actually complete my work, and I've been able to focus on it and I've been able to do my best at it and put all I've got into it and actually enjoy doing it too. 

MS TARRAGO:  And in the past you might not have had great experiences in varying types of school, whether that be mainstream or distance education, and one of the experiences that you shared with me previously was that you had been bullied in the past and that impacted on being at school.  And another aspect you shared with me was that you didn't get your needs met. Can you talk to the Commissioners a little bit about what you mean by that? 

SUMMER:  Yes. Just think of my words. 

MS TARRAGO:  So, could you do your advocacy when you were at school? 

SUMMER:  No. So, I couldn't do   for example, coming here today, I wouldn't be able to do   if I was still attending school because, one, that would be taking away my attendance, which that's an important thing, so I hear.  And that would be taking away from my mental health, as far as coming here takes time, it takes energy, and coming and talking takes a lot of mental energy to actually provide experiences in front of highly fancy people wearing high quality clothing. 

So, yeah, and I wouldn't be able to focus on school and stuff like that, and it would be taking away from my grades and my marks and that's like a whole big problem sort of thing. So, I couldn't do advocacy stuff and I couldn't do presenting while I was at school, but also I wasn't able to do full time school but study on the side because that's a lot of work, and school didn't have any animal related stuff that wasn't, like, animal husbandry, which isn't necessarily what I want to do. So, yeah. 

MS TARRAGO:  And you couldn't get credit for any of your advocacy? 

SUMMER:  Yes. That wasn't something that was valued while I was at school, and that actually led to   because I understand that school is academic. That's the whole sort of point.  But because extracurricular stuff like that, community stuff isn't valued by teachers, it's not something that's valued by students, and, in a way, it's looked down upon to do that type of stuff because it's seen as you're   it's distracting you and it's not going to be valued by the students because teachers don't value it. And it's just seen as a weird thing to do. 

MS TARRAGO:  And so doing the home school modelling at the moment is the best fit for you? 

SUMMER:  Yes. 

MS TARRAGO:  You developed this animal assisted learning program for educators with chickens, and I'm going to ask you some questions about advocacy. How did you first become aware that you were an advocate? Is that a word that you had associated with before? 

SUMMER:  It was originally not something   first off, nothing   it wasn't   words.  I use them occasionally. Sometimes correctly. It wasn't something I ever set out to do. I just randomly posted on social media my thoughts, because that's what you do on social media. I just sort of went, hey, this is my perspective and opinion on this subject, and I gained followers and people, and I had people start messaging me going, oh, you've helped me understand why I feel like this or how I think like this or why my child thinks like this and helped me understand myself or someone else. And, so, I went okay, I guess that's happening.  Right, I'll continue to post because people are getting something out of it, I guess. And as I continued, it just developed into people saying, "You're an advocate now. This is advocacy." And I was like, okay, going to have to look at what that entails and what that means but I guess that's now my occupation. 

MS TARRAGO:  And what's the main focus of your advocacy at the moment? What are you passionate about? 

SUMMER:  I focus on educating the educators. So, mostly within the education system, within school, I talk to teachers about how they can support their students best and how to understand their students and their needs. 

MS TARRAGO:  And you share your experiences of what school was like for you in the various settings, whether that's a good experience or a bad experience? 

SUMMER:  Yes. 

MS TARRAGO:  And how has that impacted on those conversations with the teachers who have listened to you? 

SUMMER:  I've had teachers come back to me and say they understand what they've been doing sort of wrong, I guess, and where they've been able to improve, and I talk about some of the simplest stuff sometimes. Like change, that can be very stressful. So, when you completely change up a classroom or you've got a teacher away sick, to just give time to settle into the new environment and to get used to it before you continue on, and then there's less   there's less stress. 

That can avoid having a meltdown. That can avoid all of that unnecessary emotional turmoil, I guess. You know, stuff like that, I talk about some of the things that I view as the easiest things.  So many of the problem stuff I look into is   it's small simple problems with small simple solutions that just aren't being done because nobody sort of talks about it, I guess. 

MS TARRAGO:  And I think you shared with me an example of that, and that was in how you might do an assessment instead of writing the answer? 

SUMMER:  I've been in multiple occasions able to just verbally answer the questions on a written assessment, and I've been able to be graded like that in the past because I overthought writing it down and I couldn't write it down because I didn't know how to do it, but I could still explain it verbally. So, I did. And I passed my assignment that way. 

MS TARRAGO:  And you also shared an experience where   explaining how - your thought process when you're asked a question. Can you tell the Commissioners how you had that conversation with that particular teacher? 

SUMMER:  So, not to overcomplicate this here but definitely to overcomplicate it because that's what my brain does. When asked a question, personally, I have to sort of visually see it in my head first. And what I have got to do is I have to look at each word, make sure I know that word, if that word makes sense, then I have to put the sentence back together. Then I have to make sure that each word makes sense within context and I've heard that whole sentence correctly because that makes sense in context. 

And then from there, I have to look at, well, okay, now that they're all together in context, what does that mean. And then I have to work out what type of answer do I have to give. Is it a yes or no question?  Is it a long answer?  Is it a short answer? Was that actually a statement?  Should I be doing something now?  Was it a rhetorical question, because that's really important.  Answer    a rhetorical question.  It doesn't go down well. 

So, after you've done all of that, you have to start on your answer to the question, and you have to actually think of your answer, and then you have to go back and check your answer and make sure your answer is not only on topic but the correct answer, and you look over that a few more times because it would be very embarrassing if I got the answer wrong now, wouldn't it. And then from there, you have to actually remember to say the answer out loud instead of staring directly at the person and wondering why they're looking back at you like that. 

It's because you haven't actually said the answer out loud. You just thought about it a lot.  And then you have to give your answer. But after all of that, it's been a fair amount of time.  The brain moves fast but not that fast.  And you sometimes have to ask for clarification about what type of answer is wanted, because that can be very confusing sometimes.  And that can be taken as you weren't actually listening, wasn't paying attention, it's that type of stuff. So, basically, answering things can be way overcomplicated just because sometimes brains like to make things overcomplicated, and it's   that's one of my examples of that's what it's like.  So, when asked a question, you have to sometimes just give time and not immediately take it as you are not listening to me, you're an extremely disrespectful human being. 

MS TARRAGO:  And so that teacher you were talking to about that experience didn't appreciate that that was your thought process, that you might have just needed a bit of extra time? 

SUMMER:  Yeah. 

MS TARRAGO:  So, how important is it to educate the educators on those experiences that you've had? 

SUMMER:  Personally, I think it's a really important thing because, one, it makes the education environment a lot safer one, and a lot more secure one, and mental health wise, it's a lot better if there's understanding around why you do things that you do.  And when there's understanding around what your needs are and something as simple as that, you could get in trouble and it could be this whole thing about you weren't listening or how you're being difficult by not giving answers and it can be blown out of proportion a lot when all that was needed was to just give 15 seconds before you ask the classroom for an answer.

MS TARRAGO:  And how important is it for young people like yourselves, like as an advocate, to be part of conversations with educators? 

SUMMER:  Once again, it's extremely important because that's the perspective that you're trying to understand and that you're trying to support. And rather than talking to educators about what they've seen and what they think should be done, it's better to talk to the youth, which would be me   so very young. Pristine. Speak to the youth about how they can be supported. You need to talk to people about how to support them rather than someone who's observed and sort of go, hey, how do you think they   I feel like we should do this for them. You know, it's a lot easier to just ask what do you need us to do. And, if necessary, help come to the conclusion of what supports can be given, because they are living it and they've got a fresher perspective on it. 

MS TARRAGO:  Summer, you've prepared a written statement for the Royal Commission on what you see is an inclusive Australia. And you'd like to read that to the Commissioners today? 

SUMMER:  Yes. Ignore the paper sounds. I don't know if they're loud or not, but if they are, I apologise for my loud paper. 

MS TARRAGO:  Please feel free. 

SUMMER:  What does an inclusive Australia look like? Inclusion looks different to everybody because we're all different. Inclusion means that everybody can contribute and participate in society as their authentic self without having to change who they are to be accepted by their community. Inclusion is making services accessible by offering diverse ways of communicating. For example, face to face meetings, email, phone calls or even just   . 

It's important to provide a choice, not to direct individuals to a form of access that is more convenient to the service provider. Inclusion is about being able to self   to be self sufficient and not require support or intervention to access your rights. Inclusion is about feeling that the diversity of your neuro type, physical capacity, mental health, race, culture, gender identity and age is not a factor which is likely to reduce your capacity or likelihood of being included and/or accepted by others. 

Inclusion means that there is not one majority neuro type, culture or gender setting social norms and that social norms are not facilitated in ableist method, making all those who have different social norm feel inadequate or segregated. 

Second page.  Inclusion means that education is accessible in several diverse approaches to match the number of diverse learning styles, educational needs, learning disabilities, languages and communication systems. Inclusion means that those who are in a positive   position of   a position of authority, power, or leadership are educated about inclusion. This means that understanding diversity and inclusion safety is a mandatory part of all education. 

Inclusion means that teachers' and educators' primary foundation is educating that is built on a framework of protecting diversity and providing acceptance and accommodations to enable all diverse neuro types, people with a range of disabilities, people from a variety of cultures to feel safe, accepted and able to be their authentic selves. Inclusion means that we celebrate a person's communication style as different and commit to learning how to communicate in the way that they need, not require them to learn our communication style as it's more widely accepted. 

Inclusion means that we welcome people to tell us how they need to be educated and remember that people all share one true commonality, an internal desire to feel like they hold value. A truly inclusive Australia will help them see that they truly do hold value and that value exists in diversity. Inclusion cannot happen accidentally. Inclusion requires significant changes to the core and foundational components, education degrees, leadership, qualifications, human resource and workplace policies, most importantly, Commonwealth legislation and daily practice. 

Inclusion cannot be achieved without education first. Education is a vehicle of facilitating acceptance. We need to stop promoting awareness of certain characteristics of diversity and instead we need to facilitate acceptance of all characteristics of diversity. Inclusion means that we don't look at a person based on the risk factors which exist. We look at a person based on the value they provide and the right they have to be their authentic self autonomously. 

I'm a big supporter of what's called the AAA framework, and this promotes the inclusion and incorporation of authenticity, acceptance and autonomy as a method of protecting our individual right to be our true authentic selves and not to have to apologise for who we are. A AAA framework also promotes us to be able to access our rights without consistently needing support to even access our most basic needs. That was my words.

MS TARRAGO:  Now, Summer, is there anything that you would like to share with the Commissioners? Any other thoughts or hopes and wishes for your future? 

SUMMER:  I think I'd just say thank you for holding stuff like this in order to put effort into making   making Australia a more inclusive place, making it a better place for everybody, and, yeah, thank you for doing your best to help everybody out and it's important   just remember, it's important to involve the perspective that you're trying to assist because they know their perspective best because they're the people living it. 

MS TARRAGO:  Thank you. Thank you, Summer. Chair. 

CHAIR:  Thank you very much, Summer. You said actually that focus is not your strong suit. Well, that has not been apparent for the last half hour. You have been very, very focused and you've also given us a very powerful statement. And thank you for doing it, thank you for appearing. We really are very grateful and appreciative of your coming to the Commission and telling us about your hopes for the future and what you see as an inclusive society. 

SUMMER:  I feel like just I want to point out that I've had this fidget as I talk, and that's been aiding my focus and it's not been distracting within this room. Thank you, teachers. Just remember, not distracting. Helpful tool.

CHAIR:  Thank you, Summer. 

MS EASTMAN:  Where do we go from here? A big thank you to Ms Tarrago and to Summer. And, Commissioners, could you receive into evidence the submission that Summer has just read and mark that Exhibit 31.001. And a big thank you to Summer.

CHAIR:  Summer, that's the very first piece of documentary evidence for this hearing, so it gets the number 1. 

<EXHIBIT 31-001 SUBMISSION OF SUMMER FARRELLY 

MS EASTMAN:  Chair, after you've done that, we might adjourn for just five minutes to reconstitute the hearing room here and then we'll proceed with our next witness.

CHAIR:  I was hoping that we might hear from Summer's poem, but maybe we can make arrangements in due course. 

MS EASTMAN:  We can do that. Yes.

CHAIR:  No hurry. Thanks again, Summer. 

SUMMER:  Thank you.

CHAIR:  We will now adjourn. 

<THE WITNESS WITHDREW

ADJOURNED 11.26 AM 

RESUMED 11.49 AM

THE ASSOCIATE:  The Royal Commission is now in session.

CHAIR:  Yes, Ms Tarrago. 

MS TARRAGO:  Thank you, Chair. Our next witness is the Toby Ruatara family. Arty Ruatara is a 13 year old young person of Gangulu, South Sea Islander, North Cheyenne and Maori descent. He lives with Autism and Global Developmental Delay. Arty prefers to be referred to as Arty, and he will give evidence with his parents Dr Samarra Toby and Massey Ruatara. Arty also has a nine month old sister Evelyn. 

Dr Samarra Toby is a First Nations medical practitioner, and Massey Ruatara is a full time carer for Arty and Evelyn. As a family, they will share their experiences navigating life and their vision for an inclusive Australia. Arty will be supported by Joker, the therapy dog today, and both Dr Toby and Mr Ruatara have taken affirmations.

<SAMARRA TOBY, AFFIRMED

<MASSEY RUATARA, AFFIRMED

<ARTY RUATARA, CALLED

CHAIR:  I want to thank you all for coming to the Royal Commission, particularly Arty, to come and give evidence today. 

DR TOBY:  Thank you. And thanks for having him.

CHAIR:  And also the statement which you have provided which we all have which we have read. We're looking forward to hearing Arty's evidence and any evidence you care to add to what Arty has to say. I'll ask Ms Tarrago to ask you some questions now. 

<EXAMINATION BY MS TARRAGO

MS TARRAGO:  Arty, your name is Arty and you're 13 years old?

ARTY RUATARA:  Yes. 

MS TARRAGO:  You've got Joker with you today, the Labrador. 

ARTY RUATARA:  Yes. 

MS TARRAGO:  How much do you like dogs? Do you like dogs and cats?

ARTY RUATARA:  Yes, dogs and cats. 

MS TARRAGO:  And all the other animals as well? 

ARTY RUATARA:  Mm hmm. 

MS TARRAGO:  And not long ago you went to the movies with dad to see Paws of Fury. 

ARTY RUATARA:  Yes. 

MS TARRAGO:  And you like eating popcorn at the movies as well. 

ARTY RUATARA:  Mm hmm. 

MS TARRAGO:  We're going to watch a short video that dad put together and that was from when you went to the movies with him. Is that okay? So the video is going to come up on the screen in front of you, Arty. Operator, please play doc IND.0026.0001.0001. 

(Video played) 

MASSEY RUATARA:  Hello, mate. 

ARTY RUATARA:  Hello. 

MASSEY RUATARA:  What are we doing?

ARTY RUATARA:  We're going to the movies.

MASSEY RUATARA:  What are we going to see?

ARTY RUATARA:  There's a    at the   

MASSEY RUATARA:  What's your favourite thing to do?

ARTY RUATARA:    

MASSEY RUATARA:  Do you like movies? 

ARTY RUATARA:  Mm hmm. 

MASSEY RUATARA:  I think you like just going to eat the popcorn. Yeah?

ARTY RUATARA:  Yeah. 

MASSEY RUATARA:  What else do you like doing? What's your favourite toy?

ARTY RUATARA:  Robots. 

MASSEY RUATARA:  Robots? 

ARTY RUATARA:  Yes. 

MASSEY RUATARA:  That's cool. What's your favourite animal?  Favourite? 

ARTY RUATARA:  Cats and dogs. 

MASSEY RUATARA:  Cats and dogs. What about your favourite food?

ARTY RUATARA:  Popcorn. 

MASSEY RUATARA:  Oh, popcorn. Do you want popcorn?

ARTY RUATARA:  Yeah. 

MASSEY RUATARA:  Here, Arty. 

SPEAKER:  Can I have my favourite.

MASSEY RUATARA:  Chicken nuggets, yep. That's lamb roast. Just grab a little bit of that.

ARTY RUATARA:  I think that's enough. 

MASSEY RUATARA:  No, you can have some more. Yeah.

(Video ends.)

MS TARRAGO:  Thank you, Arty. Arty, you're here with mum and dad today? 

ARTY RUATARA:  Mm hmm. 

MS TARRAGO:  I'm going to ask mum and dad some questions. 

DR TOBY:  Good job. 

MS TARRAGO:  Mum, you're Dr Samarra Toby and you're Arty's mum.

DR TOBY:  Yes, that's correct. Yes.

MS TARRAGO:  You're a Gangulu woman through your father's line.

DR TOBY:  Yes, that's correct, yes.

MS TARRAGO:  And also South Sea Islander and North Cheyenne through your mum.

DR TOBY:  Yes.

MS TARRAGO:  And you completed a Bachelor of Medicine and Surgery in 2008.

DR TOBY:  Yes, that's correct.

MS TARRAGO:  A Bachelor of Science in 2001.

DR TOBY:  Yes, that's correct.

MS TARRAGO:  And became a Fellow of the Royal Australian College of General Practitioners in 2013. 

DR TOBY:  Yes, that's correct. 

MS TARRAGO:  And you and your husband co own Soho Performance  Lab as well. 

DR TOBY:  Yes, we do. 

MS TARRAGO:  And that's in addition to working in clinical practice. 

DR TOBY:  Yes, and emergency medicine.

MS TARRAGO:  Dad, you're Massey Ruatara.

MASSEY RUATARA:  Yes, that's correct.

MS TARRAGO:  And you're Dr Toby's husband of eight years.

MASSEY RUATARA:  Yes, that's correct.

MS TARRAGO:  And a Maori man. 

MASSEY RUATARA:  Maori man, my people are from the top end of the North island and my tribe is Ngapuhi. Yep.

MS TARRAGO:  Really strong cultural connection for Arty and Evelyn. 

MASSEY RUATARA:  Definitely, yes. 

MS TARRAGO:  You were previously employed as coal miner and also as a former amateur heavyweight boxing champion and Muay Thai fighter.

MASSEY RUATARA:  Yes, that's correct.  Yes.

CHAIR:  Going to disagree with you. 

MASSEY RUATARA:  I'm    

MS TARRAGO:  And you've jointly prepared a statement for the Royal Commission. Are the contents of your joint statement true and correct? 

MASSEY RUATARA:  Yes, they are. 

DR TOBY:  Yes. 

MS TARRAGO:  And you're also the parent of nine month old Evelyn.

MASSEY RUATARA:  Yes.

DR TOBY:  Yes.

MS TARRAGO:  And Evelyn is being cared for while you're giving evidence today. 

DR TOBY:  Yes, that's right,

MS TARRAGO:  Mr Ruatara, how has Arty adjusted to the birth of Evelyn. 

MASSEY RUATARA:  At the start it was a bit rough for him because it was just him for the last 13 years. But as she's got a bit older and bit more playful, he's slowly warmed to her, and, yeah, he's looking after her now and really caring for her, which is good. 

MS TARRAGO:  Dr Toby, as part of Aboriginal culture, looking after the younger people in the family is a big position for Arty and other people like him. 

DR TOBY:  Absolutely. So, in First Nations cultures across the world but, you know, particularly being Native American plus also Aboriginal and South sea, we're all interconnected, so being able to care for each other, those that can't care for themselves, is very important. So, helping Arty to understand that concept from this age and trying to help him understand how to care for other children is really important to us. So, yeah, it's been amazing. He's done a good job. 

MS TARRAGO:  And we had the benefit of watching that short video of Arty doing some of the things that he likes. Mr Ruatara, can you tell the Commissioners a bit about Arty and who he is as a person. 

MASSEY RUATARA:  He's just a happy, playful little guy. He's very caring. Loves swimming, loves outdoor play. Loves IT, lots of sci fi stuff. Just a happy   happy little teenager now, yeah. 

MS TARRAGO:  And he mentioned in the video that he likes robots. 

MASSEY RUATARA:  Yes. 

MS TARRAGO:  And you also just mentioned he loves IT. So, is that some of the interests that he's got at the moment? 

MASSEY RUATARA:  Yeah, he does, he does, definitely loves coding and apps and all that sort of stuff. And he can't get enough of it. 

MS TARRAGO:      Now, Arty was nonverbal until he was four and a half years. Dr Toby, in the first few years of Arty's life, you were living in far north Queensland. Can you tell the Commissioners how difficult it was to access services and what the wait times for you to get a diagnosis or even access to specialists?

DR TOBY:  Absolutely. So, I'm from Rockhampton so I chose to go and practice up north because we have a massive shortage of medical workforce, and this was prior to being aware of Arty's, you know, diagnosis. So, in terms of accessing a developmental paediatrician, the wait list is currently six to twelve months and most of those reside in the metropolitan area. We do have general paediatricians.  Those wait lists are for three to on twelve months, depending on where you live and depending on how far you might have to travel. 

Speech therapy wait lists around three months. There's very limited resourcing and you have lots of kids that do need support. So, in terms of the delay in diagnosis, we were waiting to get assessments and whatnot, and that did cost us time and developmental milestones, we felt. And it's still a current challenge that I see in clinical practice every day for hundreds of children. So, that's, you know, so for us we're all in regional and remote Australia, do suffer immensely and that's just an ongoing health issue.

But that's probably something that, you know, as a community, I think, and as a country we could probably hopefully do a little bit better moving forward with, I think, probably more investment in that sector in addition to, you know, trying to get appropriate clinical staff and Allied Health staff available.  A developmental clinic in the public system is anywhere from six months to three years in any rural and regional centre. And the metro centres, it's a very similar wait time, I do believe, for the major health service district. 

MS TARRAGO:  As part of your journey with Arty as a family, you relocated to get better access to some of those services over the years. 

DR TOBY: Yes, we   unlike a lot of our family and First Nations people, we had capacity to relocate. So, we have moved in total, I think, about 12 times to access support services. Sometimes we would drive 16 hour round trips to come and do interviews and assessments because we couldn't access them, and that was just a challenge throughout the whole kind of journey that we experienced. So, that's how we've ended up establishing ourselves a number of times in a metro centre to access more services in a timely manner for him.

MS TARRAGO:  As I mentioned before in relation to cultural connection and as a family very grounded in that with many Indigenous communities from around the world, Mr Ruatara, in your statement you also talk about a word in te reo Maori that is for Autism. Can you tell the Commissioners what that word is and what it means?

MASSEY RUATARA:  The word is Takiwatanga and it means in his and her own time and space, so just meaning kids will learn in their own time and get there when they need to get there. And before that word sort of was even phrased out, that's how we sort of treated Arty, you know, like he's just going to take his time, hit his milestones and get where he needs to be. 

MS TARRAGO:  And embedding that cultural understanding of disability, from a variety of different perspectives as well? 

MASSEY RUATARA:  Yes, definitely. 

MS TARRAGO:  As a Maori man, why is Whanau, family, so important to you?

MASSEY RUATARA:  Family is   it means everything, like, blood or not. You know, like, we just   we all look out for each other. If, you know   you're not blood related but you're part of our family, you're one of us, and we'll treat you like our own. It's just how it's always been in my family and other cultures as well. Aboriginal cultures as well.  You know, like lot of my friends, Aboriginal friends, are my brothers for the last 25 years, you know, like we're still tight as and yes, family is   family is big.

MS TARRAGO:  How has that relationship been developed for Arty, particularly, for example, with his cousins and how they might look after him?

MASSEY RUATARA:  He's quite lucky. He's got quite a lot of cousins. My sisters have quite a few kids and so do my other cousins as well, so he's always got lots of play dates. The kids always make him feel welcome. They always sort of   he's got lots of   lots of girl cousins so they just sort of take him under their wing and sort of do the mother hen stuff and drag him all over the place, really. But they do, they all look after him and, yeah, make him feel inclusive, you know what I mean, yeah. 

MS TARRAGO:  And that's part of that cultural responsibility. 

MASSEY RUATARA:  Definitely, looking after each other. 

MS TARRAGO:  Dr Toby, can you tell the Commissioners about Arty's connection to Country and his bond that he had with your late father? 

DR TOBY:  Yes, my father passed away very unexpectedly at a young age.  So dad   so being Gangulu, Arty has been through traditional ceremonies.  He has his traditional name, and being on Country and being immersed in culture and walking on Country and learning our stories, you know, so things like how did we get the stars, you know, why is that mountain there, where does that come from, we have taught him that since he was a baby.  And doing those sorts of cultural activities, you know, that's that connectedness, because without our Country we are nothing.

And also my father and Arty just had this amazing bond, as I guess only grandparents can have with their grandchildren.  And so he would drive an eight hour return trip to watch him for an hour if I needed while I was in hospital or something treating patients.  And he would also take him to therapy sessions, common excursions, because Massey was at one point mining, so living that fly in fly out lifestyle was a bit of a challenge, so dad was a second father figure. 

So, we were very, very blessed to have my father there with us. And we spent a lot of time, you know, teaching him about, you know, different animals and what that means and, you know, even plant medicines and things like that, traditional healing, and that, I think, really   Arty knows when he's on Country and that will always be his home which, yeah, he loves going there. 

MS TARRAGO:  Now, Arty's tried different models of education, and we aren't going to name any of those schools. Instead we can refer to them as the first, second, third school and now home schooling. So, not all of those experiences have been great. When he was at the first school, that was an early intervention program and that wasn't for a continuous period. That only was for a short period. Then he went to the second school and you had to relocate and re establish your clinic. 

DR TOBY: Yes. 

MS TARRAGO:  And, unfortunately, you both had some concerns about the lack of toileting and lack of supervision and any risks of absconding. And then you   Arty's then moved to the third school where you've had the unfortunate experience of seeing some ring marks on his arm.

DR TOBY:  Yes. 

MS TARRAGO:  And he had developed some anxiety, anuresis, and lack of sleep and increased meltdowns during those experiences. So, Mr Ruatara, how much impact have those experience had on you as a family? 

MASSEY RUATARA:  Been traumatic, especially doing    and all that sort of stuff. It's like this with   sort of we didn't know where to go before home schooling. It was just, yeah, very, very traumatic, definitely. 

MS TARRAGO:  And those experiences have informed you that, in this occasion, home schooling has worked better for Arty and for you as a family? 

MASSEY RUATARA:  Definitely. We don't have to worry about him absconding or all the toileting stuff and all that.  We know how   you know, if he's having a bad day how hard you can go with his school work and all that sort of stuff. And   it's a lot. A lot   stress free for him as well, not being in that sort of environment as well. 

MS TARRAGO:  Can you tell the Commissioners about what a day of school looks like at the moment for Arty? 

MASSEY RUATARA:  Yeah, a normal day I'd start around 9.30, 10 o'clock, sort of start off with Bible study. He can get through 30 to 40 minutes. When we first started home school, he was lucky to sit still for two to five minutes without needing a movement break or, you know, just getting   just getting a bit stressed out, and so building up to where he is now, it's just night and day pretty much. Yes, so we do Bible studies in the morning, then we'll have a quick 20 minute break, then English, science or maths, and then there's normally lunchbreak.

And then in the afternoon we'll do   we normally finish, say, 2 o'clock and then it's either playground for some basketball or bit of boxing in the garage or just a little bit of   just a walk around the block just for a bit of exercise. His day is done by 3.30, 4 o'clock.  That's the general day. 

MS TARRAGO:  And by having that time in the afternoon, you've also been able to incorporate some   whether it's on Country or doing some activity that he's interested in   doing more sensory play, that sort of thing? 

MASSEY RUATARA:  Yes, definitely, yes. Loves swimming. So, definitely incorporate that as well. It's nice sensory stuff for him. It's his sort of happy place when he's swimming. Definitely he loves the boxing. It's good for self esteem.  It teaches them discipline as well, which, you know, like, he's vulnerable. So, he needs to learn self defence. He doesn't pick up on the social cues like normal people do, you know what I mean, like   just then    sort of helping him out and look after him later on in life. 

MS TARRAGO:  And with some of the sensory play, we watched the video and saw Arty spending some time in the ocean. He hasn't always had positive experiences with the textures of sand, for example. 

MASSEY RUATARA:  No, he used to hate sand, so like I   he loved the water but hated sand. So, I used to carry him to the water sometimes, or, yeah, he'd be wearing thongs, he couldn't go in bare feet. But now he's sort of desensitised a bit. He loves sand now. He loves playing in the sand, building sand castles, normal kid stuff. 

MS TARRAGO:  Now, Dr Toby, I want to ask you some questions about therapy and supports. Over the years you've accessed a number of different services and supports and therapy kits, for example. 

DR TOBY:  Yes. 

MS TARRAGO:  Did you find that those were expensive or were they more accessible for community? 

DR TOBY:  I would say they're very expensive. So, therapy resources, whether it's occupational therapy or speech therapy, psychology, like, it all costs money in addition to the actual visits themselves. And, unfortunately, Medicare, you know, you're only designed to get five Allied Health visits in a GP care plan and so many psychology visits, so you kind of have to get inventive. And so part of what   and we were a family that had income, so for a lot of my family,  though, we    other children on the spectrum, they just can't afford it. 

They can't afford therapy flash cards.  They can't afford the picture exchange communication system.  Although there is a budget there once you get verified, we have to choose between do we do the 24 up to 40 hours of therapy and try and get once to twice weekly speech and OT, or do we buy this, you know, toolkit? And sometimes, you know, when you're looking at how to support your child, you know, a health professional just provides so much of the benefit, so that was the model we took. But part of that resourcing, even we had to kind of get inventive, and that's where we basically started to develop all the resources that we've used with Arty over the years, yeah. 

MS TARRAGO:  And you undertook extra training to be able to develop that kit, the Autism toolkit that you're talking about? 

DR TOBY:  Yes. Yes, sorry.

MS TARRAGO:  And how much   what training, if you could just try to walk us through that. 

DR TOBY:  Sure. So, I   once you have a diagnosis, you become obsessed with it, as any parent would, and so many late hours up to 2 or 3 am on top of doing full time or part time clinical practice and caring for Arty.  So, we would basically   we developed therapy workbooks in the frame of applied behaviour analysis, so I did training for that.  And we integrated our cultural kind of approach in with that ABA therapy and positive reinforcement, and that worked really well for us.

For a lot of families it's probably still a little bit of a challenge because, again, everything costs money. And so prior to that, we couldn't really source one great amazing resource where it was just all in one bit, and I could whip it out and away you go. You would have to carry suitcases of flashcards and whatnot around. So, we did all the editing, the photography, the graphic design ourselves, and then we shared that with other families, if anyone's struggling, from lower socioeconomic backgrounds. We integrate that into practice if they want some assistance. That's kind of where it came from, in addition to the speech and occupational therapy support that we received, yeah. 

MS TARRAGO:  And if there was a family, for example, that wouldn't be connected with you to get access to those supports, through those therapy kits, is it readily available in a public space, like a library? 

DR TOBY:  No. And, you know, in a library you have to be very quiet. So, essentially, that's part of, you know, where, you know, in terms of moving forward, it might be a space that, you know, you could look at, but resourcing   just physical resources for family, that would make immense difference to thousands of families in this country whereby you could go in and ask for something that you didn't have to pay for, that was, you know, available to even borrow, that would be amazing. 

Obviously you'd have to have criteria around that, for the families that need it, but even just something that simple would have made such a huge difference and it literally would have saved me thousands of hours of doing stuff for Arty there and we hope that other families, you know, might not have to go through the amount of stuff that we've gone through to support him. 

MS TARRAGO:  And for you, libraries would be one of the solutions that you could see working in practice? 

DR TOBY:  I'm a massive book nerd, so we always take Arty to the library any moment we get, and it's wonderful to see all the kids there. So, if that was one thing that we could get across the landscape of the country, I think it would be amazing to have a sensory safe space and a space that   where you don't have to say sorry for your child being, you know, your child and stimming or trying to self regulate, but where you could go and access stuff that would then help the therapist as well. 

MS TARRAGO:  Mr Ruatara, what are your hopes and dreams for Arty's future? 

MASSEY RUATARA:  I just want him to grow up to be independent, just a nice strong man who can look after his little sister and look after himself. And, you know, just be a good   just be a good person, get a job. Get a partner, start a family. Just do all that normal stuff. Just want the best for him. 

MS TARRAGO:  And, Dr Toby, what are your hopes and dreams for Arty's future? 

DR TOBY:  Sorry. 

MS TARRAGO:  It's alright. We can take a moment. 

DR TOBY:  We just see our son as being Arty, and we absolutely would want him to have independence, be able to function, you know, be able to do just normal activities of daily living, as we call them in medicine, so shopping and, you know being able to have safe accommodations.  When we leave this earth, we really don't know what will happen with our son. We have a massive family network in our First Nations community will look after him and having other family in the same situation, we are currently planning for what that might look like. 

We do worry about Arty's vulnerability. He has been assaulted on a number of occasions and, you know, we can't always be there to be there with him because we will leave this earth one day. And so we just   our vision for him and for, you know, all the other little kids like him is to basically be able to be safe and creative and happy. And some of our most amazing things we have in society come from people with Autism, from music, from lawyers, from the surgeon that operates on that brain tumour. 

You know, these are people that provide amazing things for our society, and we just want to see him be happy and creative and I guess be safe. And I think hopefully through providing some evidence here to you guys today, that might inform some positive, you know, things that will come out of that, so that in 10, 20, 30 years' time, you know, even interactions with the, you know, judicial system, when they become an adult, you know, all that sort of stuff, you do worry. So, I think that's probably the main thing in just having him having a strong connection to Country because that will always be his home.

Again, we worry about services and support in rural and remote areas, so we don't know what that will look like, so we hope that that, you know, will hopefully get better for him, so regardless of where he's living he will have ongoing support. We do know our community and our people will be there, but just as a wider community, you know, we sort of really want him to be safe and, you know, free of abuse and things like that. 

MS TARRAGO:  Yes. And some of the things that you talked about in your statement, Dr Toby, was also improving some cultural competency in your field of profession and what that looks like, understanding disability from a First Nations' perspective. Can you just talk a little bit to that. 

DR TOBY:  Sure. Whenever I write a referral to a psychiatrist or a paediatrician for Autism Spectrum Disorder, it just irritates me because I don't see our children as being disordered, but I think more and above that, there's a lot of capacity and scope to make our screening that we're doing much more culturally responsive and taking the time and re designing health care system with, you know, appropriate Medicare rebates, but essentially making it so that we as primary care physicians can take the time that allows us to screen and answer those questions in a way that families and First Nations might be able to relate.

And also the simple fact of actually asking the question. So, I think there is a lot of capacity to improve in that area. I think we're doing better than we were 10 years ago but there are many children that we see every week in the clinic that could have been picked up a bit earlier, and so ensuring that, you know, we have that open communication and it's, you know, the clinical side is one thing but then you also have the Allied Health side. 

So, I really feel like there's some great work to do in that space to try and, you know, make that better and also have, you know, a standardised competency that is sort of kind of embedded into clinical practice and medical school training as well. So, I do a lot of, when working with junior doctors, you know, we do try and educate them and I think that's probably somewhere by creating the future doctors, hopefully, they will be in a bit of a different space as well. And I don't think it's that my fellow colleagues don't want to.  I think it's purely around timing and probably not having the resources there. So, that will be a great project, yeah. 

MS TARRAGO:  And do you see that improving culturally safe spaces for First Nations families who will feel safer to seek out supports and therapies if they have doctors that are responsive to their needs?

DR TOBY:  Absolutely. And, you know, coming to the doctor for us it's pretty scary, so creating a culturally safe, you know, clinical practice is no easy feat.  But that's very, very important and also ensuring that, you know, when you do get the kids in at every point you are screening them. And I think if we can improve that access and improve that connection with community in First Nations, we would see more, probably, rates, I suspect of Autism and developmental challenges.

And so hopefully moving forward, hopefully   you know, it's always a dream of any Indigenous doctor to have their people improve their health outcomes and really close the gap. So, I think, moving forward, I think that cultural competency space   and it's not for a lack of desire at all. I think it's purely just giving people the right tools and the right path forward to help them and assist them in that process. 

MS TARRAGO:  Is that also because the numbers of First Nations medical officers is only just increasing now in these generations? 

DR TOBY:  Yes, like, we are getting there, slowly. Always actively seeking out anyone who wants to become a doctor, very happy to mentor them. And as time goes on, we do hope to see more and more and more.  But also separate to us, you know, if we look at a system and a swiss cheese model of health care then, essentially, if we can also work on, you know, just medical schools in general and how to train our medical students up that would be amazing. So, they do a good job but there's always capacity to make something even better, I always think. 

MS TARRAGO:  They're all the questions that I have for you. But there's two questions that have come from the Commissioners that Commissioner Mason would like to ask. And that's, you know, you shared your perspectives from cultural as well as your professional background. What is your views on a report card on the current state of inclusion for First Nations children with disability? So, looking at it at national, state and local level in what you've spoken about, and what would be your recommendation for inclusion of First Nations children with disability? 

DR TOBY:  Well, be careful what you're asking for. It's a big wish list. No, but, look, I think in terms of some of the challenges that we see, that we personally experience and also clinically, you know, obviously having a standardised kind of process with regulation, whether that comes from a federal level, I'm not sure. I think that would be definitely helpful. I think in terms of inclusion, you know, we're such a   you know, there's so many traditional owner groups, and Indigenous doctors actually don't exclusively practice in Aboriginal medical services. The majority of us are not actually in community control. 

And so it would be ensuring that there were, you know, conversations happening around the table from practitioners from different levels. I think connecting to specialists is crucial because without that diagnosis and the verification process, you can't access anything and you can't access any funding, and it really is a limiting step. So, if you don't have private insurance or the financial means, you then can   you have to wait for the public developmental clinic and that wait list is huge. 

So, that in and of itself, working on that part of the system, would make a huge difference. What that looks likes, I'm not sure.  You'd have to do a bit of work around that. In terms of national and state data, absolutely pulling out rural, regional and remote data on our kids would be fantastic, comparing it to metro data, I think, in terms of, you know, what's happening with our children. And I think in terms of a report card, you would obviously have different developmental milestones and levels in there.

And also   ideally, in Native American culture, you know, we speak of the medicine wheel and the four directions, and that marries up very well with other stuff.  So we would embed, obviously, cultural principles into any reporting framework and also just the language   the language, so, you know, how we frame and reference, how you talk to a child every day of their life.  You know, what   the words that they hear that has power and meaning. So if every day you tell a child that's disordered, then that's going to have an impact. So, I think probably they're probably just some of the things off the top of my head. 

MS TARRAGO:  Thank you. Chair, I tender the  

CHAIR:  I thought you said there were two questions. 

MS TARRAGO:  Yes. I've just realised, in relation to the second question, that Dr Toby has answered it. I'll just put it on the record anyway what Commissioner Mason wanted to ask.  Are the resources that you develop readily available and accessible within the community? 

DR TOBY:  We   anyone who comes into our clinic or any family that approaches us   so if I have someone ring, not a problem, and we help the best that we can. Most First Nations communities in Queensland know where to find me. They often know where I live.  They often have my mobile.  They know who my family are.  They know who my parents are. So, we're very happy to help out and we're always available.  We do provide a lot of telehealth as well. So, any time anyone wants any assistance we absolutely   and we don't charge for that, we just do the best we can with them. And if they don't have the means, then we work around that. 

We did at one point have a much bigger program and then obviously relocating down here, we're just in the process of rebuilding that part of the business essentially.  And that, again, is all bulk billed.  You know, we don't charge families for any of the stuff that we do because we really believe in trying to help people.  You know, my father came from a very poor family so that's just part of what we like to do. And I feel responsible for my community as well. 

COMMISSIONER MASON:  Have the Aboriginal and Islander community health organisation had a conversation with you about those resources?

DR TOBY:  I actually used to work, yeah, for the sector. I think probably they have their own stuff that they're probably doing, I suspect. So, I actually haven't had a conversation with them specifically about what we do in our clinic. So, I haven't had any recent conversations. 

COMMISSIONER MASON:  Thank you. 

DR TOBY:  Yeah. No, that's okay. 

MS TARRAGO:  Chair, I tender that joint statement into evidence.

CHAIR:  Yes. 

MS TARRAGO:  And ask that it be marked Exhibit 31 2.

CHAIR:  31 002? 

MS TARRAGO:  002, yes.  Thank you. 

CHAIR:  Yes.  That statement can be admitted into evidence with that marking.

<EXHIBIT 31 002, JOINT STATEMENT OF DR SAMARRA TOBY AND MASSEY RUATARA 

MS TARRAGO:  And there's two other documents I tender. The first is the pre-recorded evidence of Arty which is to be marked 31.2.1   I might be corrected. It's 002.1.

CHAIR:  Yes. 

MS TARRAGO:  And the last is the transcript of the prerecording, which is to be marked 31 002.2.

CHAIR:  Yes. Those documents, using documents in the loose sense, will be admitted into evidence with that marking.

EXHIBIT 31 002.1 PRE RECORDED EVIDENCE OF ARTY RUATARA

EXHIBIT 31 002.2 TRANSCRIPT OF THE PRE RECORDED VIDEO OF ARTY RUATARA 

CHAIR:  Dr Toby and Mr Ruatara, and most importantly Arty, who seems to have disappeared   I hope    I'm sure he'll reappear but thank you all for coming. Thank you for your statement. Thank you for your evidence, which we very much appreciate, and a special thanks to Arty. 

DR TOBY:  Thank you.

CHAIR:  And the dog   what's the name of the dog? 

DR TOBY:  Joker. Thank you. 

MS TARRAGO:  Thank you, Chair. I believe that we're adjourning until 1.30 pm Brisbane time.

CHAIR:  Thank you very much. Yes. We'll adjourn until 1.30 Brisbane time. 

<THE WITNESSES WITHDREW

ADJOURNED 12.30 PM

RESUMED 1.30 PM

CHAIR:  Yes, Ms Fraser. 

MS FRASER:  Thank you, Chair. Our next witness is Ms Chloe Hayden. Chair, for your information, Ms Hayden has sworn an oath today. Ms Hayden is a 25 year old disability advocate. She is a motivational speaker, actor, author, influencer, content creator and disability rights advocate.  She has a very large online platform of over 500,000 followers and is popular on the social media platforms of TikTok and Instagram.  Ms Hayden has spoken at conferences, schools and on her own worldwide tour across three continents to over 100,000 people. 

Ms Hayden is well known in Australian homes as one of the lead actors in the popular Netflix remake of Heartbreak High. Just last week, Ms Hayden was named the Audience Choice winner at the Australian Academy of Cinema and Television Arts Awards for her role as Quinni, an autistic character in Heartbreak High. I might note, Commissioners, that in winning this award, Ms Hayden beat out several well known actresses and global names. Ms Hayden, on behalf of the Royal Commission, can I say a huge congratulations for winning that award. Commissioners, Ms Hayden joins us today by video link from Victoria.

<CHLOE HAYDEN, CALLED

CHAIR:  Ms Hayden, thank you very much for coming to the Commission, and may we add our congratulations to you on winning that award.

MS HAYDEN:  Thank you.

CHAIR:  It must be extremely pleasing for you. 

MS HAYDEN:  Thank you very much.

CHAIR:  We're looking forward to hearing your evidence today and I'll ask Ms Fraser, then, to ask you some questions now. So, thank you very much. 

<EXAMINATION BY MS FRASER

MS FRASER:  Ms Hayden, thank you.

CHAIR:  Just one   we seem to be short of vision for Ms Hayden on the screens locally. Commissioner Bennett is prevented, I think, from seeing the big screen. I'm terribly sorry, Ms Hayden.  We just want to get the technical issues solved. Can we get the picture, please, on the screen for Commissioner Bennett. Just give us a moment or two. You are alright now? We're alright now. Thank you very much. Sorry for the delay. 

MS FRASER:  Ms Hayden, as we've just discussed, as a result of your role of Quinni in Heartbreak High, you are now a household name within Australia. For some time, you have had a significant following within the disability community, and I'd just like to start by noting that your presence here today means a great deal to so many people with disability, and I thank you for taking the time out of what is no doubt an extremely busy schedule at this point in time. So, thank you. 

Ms Hayden, I'd like to start with your diagnosis. I understand that you were diagnosed with Autism at the age of 13. Could I ask you to tell me what impact did that diagnosis have on you as an individual? 

MS HAYDEN:  Initially, when I was diagnosed as autistic, it was absolutely terrifying because the only understanding that we had of Autism was that it was deficit, that there was something wrong with your mind if you were autistic, and that was further perpetuated by when I went home, I googled Autism and the only things I found were these fear mongering articles entitled A Life with Autism and How to Cure It and parents   parent groups saying, "how do I cure my autistic kid" and, "my life is over because my child has been diagnosed as autistic." 

Now, as a 25 year old, being autistic is something I am immensely proud of.  It is who I am wholeheartedly and in its entirety. And not only is it something that I am but it is something that I would never want to get rid of it. Being autistic is what makes me who I am. A diagnosis is something that is so, so deeply important for not just a child but for anyone to be able to understand who they are. People think that a diagnosis is going to label someone, but we as human beings label people anyway, so having a diagnosis simply puts the label into something that is in my control and in my hands. 

MS FRASER:  And, Ms Hayden, what was it that caused that transition between something that you or your family may have felt fearful about to something that you are now able to celebrate? 

MS HAYDEN:  When I couldn't find any articles or any   anyone, period, talking about Autism in a positive light, I made a blog post, and it was a young girl screaming to the universe, begging to find just one more person like her, and when I reached out to people, people started reaching back to me, and very, very immediately I had hundreds, I had thousands of people reaching back to me who felt the same way that I did, who also thought that they were aliens on this planet that was so far away from home. And when I started to find the beauty in other people and when I started to find communities and when I started to realise that I was supposed to exist and I knew that I was supposed to exist because there were hundreds of thousands of people just like me, that's when I was able to start seeing the beauty in it myself as well. 

MS FRASER:  And when we talk about a vision for an inclusive Australia, it's important for us to reflect on where we've come from. So, just so that I understand, you were 13 a matter of 12 years ago. So, just 12 years ago, you didn't identify anybody in your community or in the media or otherwise that you identified as just like you? 

MS HAYDEN:  No. 

MS FRASER:  And so it's through your work that you have enabled so many other people to identify someone just like them? Would you say that that's an accurate reflection? 

MS HAYDEN:  I think so. I think based on the messages that I have received and the amount of support that I've had, then I would say that's true, yes. 

MS FRASER:  Well, I think we should probably pause to just reflect on the impact that your work has had. So, I understand that you have half a million followers on social media; is that correct? 

MS HAYDEN:  It's 700,000 now, but yes. 

MS FRASER:  700,000, thank you for that correction. That is indeed an important correction. And so am I correct to also understand that some of your content has been viewed by half a billion viewers. 

MS HAYDEN:  Correct. 

MS FRASER:  Is that correct? So, that goes to show just what one individual person can do in the space of 12 years in terms of that conversion of understanding and attitude. If I can come back to the time when you created your blog, how old were you at that point in time? 

MS HAYDEN:  16. 

MS FRASER:  16. And can you tell the Commissioners about some of the content that you post on social media? 

MS HAYDEN:  The content that I posted originally was me screaming to the universe, and I wasn't doing it in any way, shape or form to, you know, be inspirational or to be a voice. I was doing it because I was trying to find a voice. And when I realised that there was no voices that were being allowed to be heard and that had the opportunity to be heard, I realised that perhaps it was my job to do it instead. 

So, my content ranges from educational things that I wish my psychologist and my doctors and my teachers had have known, because, ironically, the medical system and the educational system is quite likely the most uneducated when it comes to Autism. And I also make content that I wish I had had when I was a young person growing up disabled. The content I make is for everyone, both in terms of learning and unlearning and hopefully to be encouraging and to inspire young people to understand that who they are is who they're supposed to be as well. 

MS FRASER:  Can I talk to you about the concept of calling people in and calling people out on social media. Can you explain to the Commission what you mean when you talk about calling people in or calling people out? 

MS HAYDEN:  So when I make my videos   for a very long time, I kept my voice quite quiet. I made sure that I was what people wanted to see and what people wanted to hear because I knew the fact that I had a platform at all was already stirring the pot, because people don't want disabled people to exist. They don't want to see disabled people in media. So, the fact that I already had a platform was enough of a stir. 

And when I came to the understanding that I was allowed to exist just the way that I was, I decided that I didn't have to be quiet anymore, that I was allowed to be loud, that I was allowed to make noise and I was allowed to call out what was wrong. And the way that I have done that and continue to do that originally is by calling out the issues and by advocating for people to unlearn their bias and unlearn their stigmas and unlearn what they have once known about disabilities and to relearn from people that are actually disabled instead. 

When these people choose not to or simply don't want to relearn and re educate themselves, that's when you can call them out and that's happened with several very large people for me. It's happened with the singer Sia. It's happened with several very, very large Autism organisations and celebrities within America, and it's happened in a smaller level as well. 

MS FRASER:  And so you give people an opportunity to correct their views, but if you   if they can't see the wrong in their ways, you then take the step of calling them out? 

MS HAYDEN:  Yes.

MS FRASER:  Yes. And could you tell the Commission, your social media profile is obviously a significant part of the advocacy work that you do, and in many ways that's an advocacy form that is in people's homes every day. Can you tell the Commission about the power of that kind of advocacy for people who read your social media posts? How easy is it for them to access? 

MS HAYDEN:  Social media is immensely impactful. It changes the way that we view the world, and we see that in a negative effect and we've seen that for a very long time in terms of young women and their body image, and we see that in the way that these models and the way that we take in media, it showcases in a way that we put ourselves out as well. But this is also immensely true when it comes to disabled people as well. For a very long time and honestly even now, disabled people aren't welcome in traditional media.

We're not allowed to be a part of traditional media, unless it's under the view of somebody that is able bodied and typical. So by having a social media platform where we control what we say, we control our voice and we control how much we share our voice, it gives us a voice that, throughout history, we have never ever had before. Social media is such an impactful thing, whether that's a neglect thing or a positive thing. And for the first time in history, we're now seeing disabled people actually having a voice and not having our voices taken away from us because it's our platform, it's our voice and we can choose how to use it and how much to share of it. 

MS FRASER:  And so for the first time in our history, we actually have a form of history in which anybody can have a voice.  Is that how you understand social media?

MS HAYDEN:  100 per cent. 

MS FRASER:  So, we can all pick up our phones at any point in time, post something or read something. 

MS HAYDEN:  Yes. 

MS FRASER:  Ms Hayden, could you talk to me about some of the other advocacy work that you do other than just in the social media space?  So, some of the motivational speaking that you engage in? 

MS HAYDEN:  Yeah. So, I   I originally started by blogging and by YouTubing, but then I realised that I could make more of an impact by actually stepping out. And now I travel the world doing motivational speaking. I have just come out with a book at the end of August which is now a best seller and is about to hit the UK. I have worked with the Education Department. I've worked with Ambulance Australia. I work with a lot of psychologists and a lot of doctors and a lot of schools in order to help them change their systems and in order to help them change their knowledge. Social media is incredibly impactful, but it is also extremely important that we are welcomed into every single space, because if it only stays on social media, we can't have that same impact that people that are able bodied and typical do. 

MS FRASER:  Would you say that the role of social media in your advocacy has gone hand in hand in some respects with that other advocacy that you've done? It's enabled that other advocacy, to some extent?

MS HAYDEN:  Massively. A lot of people will simply hear, you know, "Oh, there's an autistic girl, and she's saying that what you're doing is wrong" and they're not going to listen to you. But if they then Google me   and, unfortunately, people are quite shallow a lot of the time so they'll see someone and go, "Oh, she has more than half a million followers, so what she's saying has to have some merit." Which in some ways sucks, because people that don't have Instagram at all and that don't have a social following at all have just as much merit, but, yes, my social media has been immensely helpful, and I'm immensely privileged to have the following that I do and have the voice that I do because it does mean, then, that I'm able to continue to make those waves off of social media and traditionally as well. 

MS FRASER:  Ms Hayden, I'd like to unpack with you a little around the representation of people with disability in the media. From your perspective, how do you consider that people with disability are currently represented in the media?

MS HAYDEN:  When you look at disabled people in the media, first of all, the very vast majority are not disabled people. They are actors pretending to be disabled people, therefore, pretending to know my life and my story and my existence. You can never understand who I am as a human being by Googling my condition for 20 minutes, then playing it on a movie. The other thing as well is that the way that media, particularly when it comes to Autism, portrays these disabilities is immensely wrong and stereotyped. 

The amount of times I've told someone I'm autistic and the response to me has been, "Oh, but you don't remind me of Rain Man."  My mum cried when I got my Autism diagnosis as her first thought was, "My child is going to turn into Rain Man." Traditional media and movies and television and the news have such a hold on the way that we view the world and the way that we view humans. Me growing up, first of all, the only representation of Autism being Sheldon Cooper and Rain Man and What's Eating Gilbert Grape and then also just simply never seeing anyone I could relate to made me think, "Am I supposed to be here? If I can't see myself in media, am I supposed to exist in real life as well?" Media has such a hold on the way that we view people. 

MS FRASER:  And how important is it for a young person particularly   but not just young people, all people with disability, how important is it for them or for us to see ourselves represented in the media? 

MS HAYDEN:  It is so important. Like I said, I grew up my whole life thinking that I wasn't supposed to exist, and a very, very large reason for that was because I didn't see myself represented. And it's well and good to go, you know, that's a bit dramatic, but most people see themselves in every day without even considering it. You know, young white people see themselves   that are able bodied and typical see themselves without even having to consider it, because that's the normal. That's what society has taught us is normal and is real and is actual, when that's not the way that the world is. 

So, when a young autistic girl who doesn't act like any of these people that she's ever seen in media before, when she watches the telly and she can't see herself, she immediately goes, "Okay, well, I can see represented in this character, and I can see you represented here.  I can't see myself anywhere" and it gives us this impression that we're not supposed to be here. 

MS FRASER:  And sometimes the media has created disability roles, so roles portraying people with disability, but they haven't always done that using disabled actors and actresses, have they? 

MS HAYDEN:  No. In fact, my understanding is I'm only the second person in history that is actually autistic to play an autistic character. 

MS FRASER:  And what do you consider to be the importance of that concept of authentic casting, using disabled actors and actresses to play disabled roles?

MS HAYDEN:  I mean, our global understanding of Autism is proof enough of it. The fact that the only representation we've ever had is neurotypical people playing an autistic person and the representation has always been horrendous and very, very stereotyped and not what Autism is even slightly. It is so important for authentic casting because   and not just authentic casting but authentic representation in every single aspect of media. When I was doing Heartbreak, if it was only me as a disabled person and I had neurotypical backstage telling me what to do and who to be, that wouldn't have worked. That would be just as bad. We need autistic people in front of the camera and we need autistic writers and we need directors and we need producers and we need creative consultants. We need people in every single chair to make sure that representation happens. 

MS FRASER:  And that it happens in an authentic and true way. So, it's not just enough to have a disabled person play the role, but you would say it's important that, for example, a disabled person is involved in the writing process. 

MS HAYDEN:  Absolutely. I think it is so immensely important and something we have left out for our entire lives. It is so important that we have disabled people in the room. Disabled people have to be in the room. If you are only using disabled people as your token card, if you're only using disabled people as your box tick, that's not representation. We have to be in every aspect of that room. 

MS FRASER:  And, in fact, would you say that if there is not that level of authenticity at all levels, you actually run the risk of a negative portrayal of disability even when you are trying to use a disabled character. 

MS HAYDEN:  100 per cent.  The amount of portrayals of Autism that we've seen   and as I've said Sheldon Cooper and, you know, What's Eating Gilbert Grape and Rain Man and The Good Doctor are just a few examples, but they are all very, very negative examples of Autism.  And the amount of flak that I've copped because of being autistic and because I'm not like these characters is  it happens to me all the time. It is   if you're going to have representation, make it honest or don't make it at all. 

MS FRASER:  Ms Hayden, could you ask you what is your personal vision for an inclusive Australia? 

MS HAYDEN:  I would love to one day turn on the telly and see a disabled person and see a person in a wheelchair who just so happens to be a part of that story and to see someone that's autistic who just so happens to be part of that story, and to see a trans person who just so happens to be part of that story. I think we have such a hold on representation and inclusivity and making sure we tick these boxes. But it would be so wonderful to get to a point in our society where representation isn't even a word that we need anymore because it is simply the normal. 

When we think about, you know, a straight white man in a movie, we don't think of that as representation.  We think of that as the normal.  I would love to be able to turn on the telly and see someone in a wheelchair and to see someone that is nonverbal and to see someone that is autistic and to see someone that is blind and they just so happen to be there. And it's not representation; they're just a part of the story.

MS FRASER:  So, that their disability itself is not the focus of their character but simply a characteristic of their being. 

MS HAYDEN:  It is so important that someone's disability, as   while we are still making sure to validate that person as a disabled person, it is so important that in media, that person's disability is the least important part of them. 

MS FRASER:  And would you see as part of that representation in the media and roles where we might see people with disabilities just doing everyday actions?

MS HAYDEN:  Absolutely. Like, I think it would be amazing, like, just commercials and   like, the character shouldn't resolve around a disability. The character should simply be and they happen to cast a disabled person in it. 

MS FRASER:  Be wonderful to see a person with disability in the media doing something as simple as their grocery shopping, for example. 

MS HAYDEN:  Mm hmm. 

MS FRASER:  Something that people never actually see and don't necessarily understand how that works and yet it's just a common part of the disabled experience. 

MS HAYDEN:  Uh huh. 

MS FRASER:  How can media impact the society's perceptions of disability?

MS HAYDEN:  The media already has very immensely impacted society's view on disability. The unfortunate thing is that it has impacted it in an extremely negative light. The same way that I grew up thinking that I wasn't supposed to exist because I never saw representation of myself, we can change the media to make sure that young people grow up seeing themselves represented and knowing that they are supposed to exist. 

MS FRASER:  And, Ms Hayden, what can people other than people in the media, what can people without disability do to also help realise your vision for an inclusive Australia? 

MS HAYDEN:  Listen and unlearn and relearn from disabled people. So many people aren't choosing to be ableist and aren't choosing to have a bias against disability. It is literally ingrained into us from the moment that we are born to dislike disabled people and dislike what is different from us. The education system and the medical system have a disability deficit understanding. They believe that disabled people aren't supposed to exist medically. 

When I was diagnosed as autistic, their understanding of the diagnosis   the amount of disabled women or autistic women that are misdiagnosed or aren't diagnosed simply because the actual medical system doesn't actually understand us. It is so important that we unlearn what we think to be true because of what medical text books and so called professionals and people that aren't us who have spoken on top of us for our entire lives. It is so important that we unlearn that and instead relearn from disabled people, and that can be in the form of traditional media or it could be in the form of social media.  There are so many disabled advocates now. Or it could be in the form of simply speaking to your disabled friends. 

MS FRASER:  And some people don't necessarily have a negative view of people with disability.  They simply don't know anybody with disability.  Would you agree with that? 

MS HAYDEN:  I think so. I think disability a lot more common than we understand. I believe one in six Australians are disabled. Statistically, you know a disabled person. A lot of the time as well, though, we simply choose to not look at the disability, which a lot of time is actually a lot worse. We deny and push down a person's disability. So, I guarantee most Australians do know a disabled person. Speak to them, and if they don't want to speak because, look, advocacy is hard and a lot of people don't want to fight their whole lives to advocate for themselves. There are so many advocates that are doing that job for you, so it is not hard to listen. 

MS FRASER:  That brings me beautifully to the next topic that I wanted to cover off with you, so thank you for that. I wanted to have a bit of a discussion around something called advocacy fatigue. What do you understand by the term "advocacy fatigue"?

MS HAYDEN:  As a person who has had to advocate for my right to exist for my entire life and to advocate for other people to see me as who I am and to advocate for other humans as well, it's hard and it's difficult and it gets tiring. It's physically draining. It's emotionally draining. There has been many times where I have had to advocate for myself and then minutes later I'll go nonverbal for days at a time or I'll lock myself up in my bedroom. One of the reasons I'm not in Brisbane today is I've been in burnout for the past four months because of advocacy fatigue. 

And I love advocating. I would never change it. It is something that I'm so deeply passionate about, but we need more people to do it. We need more allies and we need more typical people and we need more nondisabled people to join in on this boat with us, because it's hard when you're rowing it by yourself. 

MS FRASER:  And what do you say to the suggestion that some disabled people are engaging in advocacy by simply being or simply doing their everyday job? Do you agree with that as a concept?

MS HAYDEN:  Yeah, 100 per cent, particularly when people have such a stigmatised and stereotyped idea of what a disability is and what disabled people are. I will   I've done acting jobs where I'm not playing an autistic person, I'm simply doing my job as an actor, and someone will find out I'm autistic and they're like, "Wow, that's so inspiring." And I'm like, I'm not trying to do anything right now. I'm just trying to do my job. 

People will see someone that's in a wheelchair, like you said, out grocery shopping and go, wow, that's amazing. And I hate the whole inspiration porn thing. I think it's disgusting.  But at the same time, disabled humans simply existing in ways that people aren't expecting them to exist is advocacy. 

MS FRASER:  And in order for that advocacy to be impactful, people without disability, as you say, need to listen and to watch and consider. 

MS HAYDEN:  Yes.

MS FRASER:  Now, I am a   what I'm going to say, relative to you, is an older person with disability, and I would like to discuss with you this concept of disability pride. It's something that has become known to me over the last couple of years, and it's certainly not something that as somebody in their 40s with a disability was necessarily aware of when I was your age. Can you tell me, as a young person with disability, the importance of the concept of disability pride? 

MS HAYDEN:  We've been taught for our entire lives that who we are is wrong, a deficit and broken, but I love being disabled.  And if I had a genie and a magic lamp come up to me and say, "I'll make you typical," no way. I'd kick him. There's no way I would take that offer. I am so proud of being disabled and I am so proud of who I am as a person, and, yes, there are some things that absolutely suck about it, but most of those things are things that we can change as a society. Disability pride and pride in who you are is so important. And it is so important that young people grow up seeing themselves as disabled and not wishing that they could change, but simply existing and understanding that they are supposed to exist. 

MS FRASER:  And you would say that an integral part of developing that disability pride is actually seeing ourselves in mainstream media? 

MS HAYDEN:  100 per cent. 

MS FRASER:  It's hard to be proud of something that you don't necessarily see reflected on your screen. 

MS HAYDEN:  Yeah, absolutely, and that's 100 per cent why I do what I do, because I want young people to grow up not feeling the same way that I did. 

MS FRASER:  One final question. I want to just simply reflect with you on the importance of strong leaders amongst people with disability. What do you consider is the importance of that presence of strong leaders, not just yourself   you cannot do it alone, as you say. But how important is it that we see strong leaders with disability in all aspects of our society?

MS HAYDEN:  So immensely important. I've spoken a lot already about how important and how much it would have changed my life if I had have seen someone like me in the media. But if I had have seen a real life person like me, my whole life would have been so different. It is so important that we see disabled people and minority groups in general in positions of leadership and in positions of power and in positions where young people can look at this person and go, okay, I now have something that I can get to. If you're there, then there's no reason why I can't be there too. 

MS FRASER:  Ms Hayden, I would just like to say an immense thank you for giving your evidence today. I can tell you of the impact that you have had on so many people with disability, because in the process of this Royal Commission I've spoken with many young disabled people and you are their shining light. You are their example. So, thank you so much for giving your time. I can tell you that you are empowering the next generation of young people with disabilities, and thanks to you, I am certain that our society will, in fact, be far more inclusive into the future. So, thank you very much. 

MS HAYDEN:  Thank you.

CHAIR:  Ms Hayden, as an old white man, I'm not sure I can add anything to that. So, thank you very much for your evidence and for the work you've done and for the influence that you have had. We very much appreciate you sharing your experiences with us. What channel is Heartbreak High on?

MS HAYDEN:  It's on Netflix.

CHAIR:  Netflix. Okay. Thank you very much.

MS FRASER:  We'll make sure the Chair has a subscription to that one, Ms Hayden.

CHAIR:  The Chair's got a subscription to Netflix. It's just what he does with it. 

MS FRASER:  Thank you very much.

<THE WITNESS WITHDREW 

CHAIR:  Ms Eastman, what do we do now?

MS FRASER:  Chair, we will now adjourn until 2.15. Thank you.

CHAIR:  Thank you very much.  Thank you.

ADJOURNED 2.03 PM 

RESUMED 2.17 PM.

CHAIR:  Yes, Ms Eastman. 

MS EASTMAN:  Thank you, Commissioners. I'm pleased to say that our final witness for today is Professor Gerard Quinn. He's just told us that he has an appointment with the Finnish Parliament this afternoon our time. So, I want to use the time that we have with him as productively as possible. So, Mr Quinn has given his oath and affirmation and, with the Commissioners' leave, I might just introduce Mr Quinn for you and then we can move to some of the particular topics that I want to address.

<GERARD QUINN, CALLED

CHAIR:  First, Mr Quinn, thank you very much for being prepared to give a statement to the Royal Commission. We understand the privilege that attaches to you in your capacity, and we're grateful for your having waived that immunity. So, I'll ask Ms Eastman in a moment to ask you some questions. I'm just intrigued, how did you get from Tel Aviv to Dubai?

MR QUINN:  Thank you so much. It's an honour and a pleasure to appear before you. I'm actually teaching a short course at NYU in Abu Dhabi and I'm leaving tomorrow to attend a conference in Haira University in Israel on intersectionality, as it turns out. So, it's a great honour and a privilege to be with you this afternoon, and I apologise I cannot be there in person.

CHAIR:  That's quite alright. Thank you very much. I'll now ask Ms Eastman to ask you a question. 

<EXAMINATION BY MS EASTMAN SC

MS EASTMAN:  Before I ask the questions, some people will know Mr Quinn, and Gerard Quinn was appointed as the United Nations Special Rapporteur on the Rights of Persons with Disabilities by the UN Human Rights Council in October 2020. He also holds two research chairs at the Raoul Wallenberg Institute of Human Rights in Sweden and Leeds University in the UK. Mr Quinn was formerly the Chair of the National University of Ireland, where he founded and directed the Centre on Disability Law and Policy. In Ireland, he has served as a member on the Commission of the Status of People with Disabilities from 1992 to 1996. And that Commission was composed of a majority of persons with disabilities. 

The Commission produced an early blueprint for change in Ireland based on disability. He has also been the Director of Research at the Irish Government's Law Reform Commission and a member of the Irish Government's Task Force on Individualisation of Budgets and Services. I won't be asking him questions about that today. He has served two terms on Ireland's Human Rights Commission, and at the invitation of the President of Ireland, he served on the Council of State for Ireland from January 2012 to 2018. 

Mr Quinn was the lead focal point for the global work for the National Human Rights Institution during much of the negotiations for the UN Convention on the Rights of Persons with Disabilities, and he was Head of Delegation for Rehabilitation International during the UN working group in 2004. He has served as the first Vice President of the European Committee on Social Rights, which is a human rights monitoring body on economic and social rights in the Council of Europe. In that role, he helped develop its jurisprudence on the rights of persons with disabilities and older persons. 

He has received three awards for his work on international disability law from Rehabilitation International, the US International Council on Disability, and the European Association of Service Providers. He served as a temporary civil servant on the European Commission in the mid 1990s and helped develop its policies on disability based on equality. 

He's also served on several advisory boards on disability issues, including Human Rights Watch, the Open Society Foundations into Rights, and the European Foundation Centre. He has numerous publications to his name on international EU disability law, and many have been translated into a number of languages. He also has a connection with Australia, and he has served visiting professorships and research positions at the University of New South Wales and Deakin University. 

So, it's my absolute pleasure to welcome Professor Quinn to give evidence this afternoon. I have asked him in the preparation that he not comment on matters concerning Australian political affairs or Australia's compliance with the CRPD. He's reminded me that he doesn't sit as the CRPD committee and his role as the Special Rapporteur is one that assists states in developing their disability rights policies. 

So, the focus of our discussion today will be based on a statement that he's prepared for you, Commissioners, and I think you've received the most recent statement earlier today, and his paper is entitled Social inclusion, disability and human rights, and the topic is inclusion, its place in human rights and its relevance a future disability policy and imagination. 

So, Professor Quinn, thank you very much for preparing the statement. The Commissioners have a copy of the statement and will have read the statement before you've joined us today. I was hoping that we could have a conversation about some of the important conceptual issues with respect to disability rights and also dive a little bit more deeply into some of the important issues that we are looking at in this hearing this week around a vision for inclusion. So, I hope that's agreeable to you. 

MR QUINN:  Thank you very much. Yes. 

MS EASTMAN:  So, you've said, in essence, your topic is about framing and then the reframing of disability policy debates within human rights, and you say this ultimately comes down to hard choices in domestic law and policy, and there were three issues that you wanted to focus on for the discussion today. These are, Commissioners, page 3 in the statement. First of all, you wanted to reflect back on what preceded the CRPD, on the mischief of the medical model that it was designed to tackle. Secondly, you wanted to reflect on the drafting of the CRPD, and you say Australia played an outsized role in that process and you say that's a fact we should be proud of. And, thirdly, you wanted to speak to some practical examples, and we've discussed the issues around segregation, autonomy, independence and inclusion. 

So, I want to start with these issues around the CRPD, and based on your experience, but also the work that you have done as Special Rapporteur, the CRPD is an international convention and it applies to all countries and all jurisdictions. These jurisdictions will have different legal systems, different cultures, different histories, different resources, and perhaps different expectations. So, one of the questions that arises for the work of this Royal Commission is how should we be thinking about the CRPD as leading and assisting in the development of policies and practices that give effect to disability rights? 

MR QUINN:  Yes. Thank you so much. I think the really important point to continually remember is that the CRPD as a treaty is a creature of states. It's not adopted by civil society, would that it were. It's not adopted by regional organisations, would that it were. It's adopted by states. So, by definition, it has to have some use value to states. And I like to think that the treaty is not a pinprick in point of time; that it actually reflects trends that had already been happening around the world for the previous 20 or 30 years. It crystallises those trends, and hopefully in crystallising them helps to galvanise the process of change, concentrate minds and get people focused on the right things. 

The key thing about the Convention is the reframing of disability, and I continually stress this reframing had been happening for the previous 20 or 30 years and is simply given crystal clear expression in the treaty. The reframing has everything to do with breaking away from the stranglehold of the medical model in the past, which focused or fixated on a person's impairment and built policies   largely exclusionary policies   based on the impairment. And if you flip that around and look primarily at a person's humanity and their right to belong and to connect and to self actualise as a human being and to give back to their community, then that makes a tremendous difference in how we think about law and public policy and, indeed, social services. 

So, flipping that switch is the incredibly important thing that the CRPD does. Again, I wouldn't rest all my eggs in one basket. The CRPD, as it were, reflects this process and crystallises it and hopefully strengthens the resolve of states in the future to begin turning the ship around. And it's a big ship to turn around because for the last 70, 80 or 90 years, we've been building policies, particularly exclusionary policies, based on impairment and now we have to interrogate our past and also build a much more inclusive future. 

MS EASTMAN:  I think you've described the CRPD and international human rights treaties generally as not to be seen as something like a strait jacket that is rigid in its both interpretation and application. So, can I ask you just to speak to what you mean by not acting as a strait jacket, perhaps from the perspective of how you use the CRPD in a very practical day to day way? 

MR QUINN:  Yes, I think, again, the really important thing is the flip in framing of people with disabilities as human subjects, rather than as being defined by their impairments. And I think what's needed is a kind of a new policy imagination to work out the entailments of that flip, sector by sector, domain by domain, topic by topic, which is not an easy thing to do. One of the Articles in the Convention that's routinely missed is Article 4.4. That essentially says states are encouraged to innovate, to think differently, not just to follow standards but to set their own standards. 

And I view that as an open invitation toward policy entrepreneurship within states, to thinking differently, and to putting in a dynamic of change that can help keep moving things forward. I like to think of treaties as being a combination between what us lawyers call obligations of result, things to be achieved regardless of how they're achieved, with obligations of means, steps to be taken in the right direction. I think the treaty combines both. I think the obligation of results is encapsulated in this kind of philosophical shift within the Convention. If we move toward viewing people with disabilities not as being defined by their impairments but by their humanity, then that requires us to move in a particular direction. 

And a lot of the CRPD is taken up with obligations of means, the granular detail of how we get there. But subject to the caveat that it creates   in fact, it invites space for innovation and for fresh thinking on the part of states.  There is not one right tailor made solution for every country and every state. It will very much depend on your culture, your history, your legal system, and, indeed, the kind of level of resources you're willing to commit to the process of change. 

MS EASTMAN:  So, the revolution, I think it's sometimes been described, in terms of the CRPD was almost to force a way through and out of a medical model of defining disability and identifying disability by impairment, and to work towards what's described as a social model. Can I ask you this question:  a social model itself might draw in cultures, histories and the particular circumstances of States around the world. In your journey visiting states as Special Rapporteur, how do you actually see that social model developing in the discourse around disability in the different jurisdictions? 

MR QUINN:  Yes, I think it's important to realise that there were at least three different social models at play in the 1980s, 1990s:  The British social model, the American civil rights based social model and, indeed, the Scandinavian social model have model of normalisation. Regardless of the intricacies of the differences between the three social models, they all shared one thing in common, which is that we shouldn't be problematising people. We should be problematising the circumstances within which people find themselves, largely through no fault of their own, and I think that's widely accepted around the world, that this is where the action should be, this is where the focus should be. 

That's not to say that the impairment is irrelevant, but it is to say that it's not the primary thing that defines you or that ought to define the posture of public policy toward you. The primary thing that should define that relationship is how do we create space for to you flourish as a human being and to give back to your community as a human being. And I see widespread acceptance around the world of that. We're just back from a country visit to Jordan, and it's extremely impressive how deep that policy flip has actually percolated into their system. 

MS EASTMAN:  Can I take your words around the policy flip and you say that our life world in employment, education, transport, et cetera, was designed to admit those who conform to the most species typical functioning, so a person without impairment. And the default of those systems meant that others would be excluded or segregated. 

So, when you're talking about the flip, are you talking about not starting with the development of these areas, for example, employment, education, transport, on the basis that these will be systems that will exclude and segregate people by nature? 

MR QUINN:  Let me just back up a little bit because I think there is something very interesting going on which is that we have this default toward exclusion that's sort of inbuilt into the medical model. Now, I'm one of those who thinks that the medical mission is an incredibly humane mission, but the real sin of the medical model is how this ethic of measuring people in how they deviate from a norm and then implicitly excluding them from the life world, the main sin was porting over insights from the medical model to completely unrelated fields like education, housing, transport, and so forth. 

So the ethic, the initial posture is one of exclusion, based on the material difference of the impairment. And the unholy alliance, as I see it, in the past was between that posture of the medical model, the one of exclusion, and almost the appearance of the naturalness of the exclusion, with kind of like the way our equality thinking had trended in the past, which was to justify differential treatment based on a material difference. And it was very, very easy to simply rush to the conclusion that the material difference of the impairment not only justified unequal treatment but perhaps even demanded unequal treatment. 

So, we've a big challenge, which is to disentangle our thinking about equality, our thinking about the medical model and to tackle the exclusionary ethic in many, many different domains. One of the domains I work on is armed conflicts and disability, and it's quite fascinating that even though the fourth Geneva Convention of 1949 explicitly includes people with disabilities, nothing has been done. It's as if the expectation is that you will not be included in any of the very fine provisions dealing with civilian protection. So, it's kind of unmasking that invisibility, sector by sector, trying to reverse it and trying to put a completely different ethic in place into the future. I'm not sure it has that complicated measures, but you pushed a button and I responded. 

MS EASTMAN:  Well, I'm going to also take a step back and ask you about equality. Often and particularly in democratic western legal systems, our sense of equality is very much based on a comparative model which we call formal equality, and that's really comparing the treatment of people with or without the characteristic. And the Royal Commission has been looking at and trying to understand models of equality. We've examined formal equality. 

We've been thinking about the concept of substantive equality, which on one view could be about different treatments to achieve equal outcomes. But in disability, there may need to be something more, and you've used the language of inclusion equality or transformational equality, and these adjectives can be a little confusing. So, if we're thinking about equality as a vehicle for inclusion of people with disability, how do we identify the way in which you achieve equality of that kind? 

MR QUINN:  Yeah, I think the concept of formal equality that you alluded to, I mean, one of the criticisms of it is that it just deals in relativities, how I'm treated relative to you given that we may be similarly situated. This has led some to call it a morally empty conception of equality because there's no grounding of justice underpinning it, so to speak. But I think the major flaw of the approach is that it turns on an Aristotelean conception of equality, treat equals equally and treat unequals unequally. And that creates a lot of headroom to see difference, to judge difference, to value difference, and it creates a lot of headroom   arguably too much headroom   for the medical model which simply fixates on the impairment and therefore, within the traditional equality model, you can not only defend exclusionary treatment but perhaps even demand exclusionary treatment as a way of respecting the difference, so to speak. 

So, I think that's the subtle flaw of the formal equality approach. I've mentioned Oddný Arnardóttir's writings, I think, in the piece and I'm happy to share some of her work with you. What was fascinating to me is the journey from that formal equality theory to the notion of equality as acknowledging difference, and then positively accommodating difference. You've done this in Australia with your Disability Discrimination legislation   one of the first in the world actually in the early 1990s   and then she moved on to a theory of multidimensional disadvantage in equality. 

And when you think about it, our traditional focus on equality is very synchronic. It focuses on the here and now, how do you present, how do the relativities present, let's say before a court of law. It doesn't open up the debate into looking at your life journey or the advantages or the disadvantages you've faced or whether, for example, you've gone through several exclusionary domains in your life which could have maybe stunted the development of your personality and so forth. 

And the fascinating thing to me is to see the UN Treaty Body in its general comment on equality reframed equality as something that should be intentionally used to generate a more inclusive society and to interrogate all these segregationist spaces, so to speak. So, it looks very much to me like the UN CRPD Committee is lifting the theory of equality from its past   which did not really serve groups like people with disabilities very well; it doesn't suit older people very well either   and to try and peg it toward a more active philosophy of how we challenge up the closure of spaces in the past and open up these spaces in the future. 

I'm not sure that makes a lot of sense but I'm very happy to share with you Arnardóttir's writings and some others as well. 

MS EASTMAN:  Thank you. And it takes us to this issue around segregation. So the work of the Royal Commission is not only to look forward but also to look back and to understand and listen to the experiences of violence, abuse, neglect and exploitation, and what our Royal Commissioners have heard are some stories going back into history and perhaps even in contemporary times of exclusion and segregation. And I want to ask you about the how that word "segregation" is used in the CRPD and how we should be approaching the dismantling of segregation. Can I ask you about that? 

MR QUINN:  Yes. I think the   I haven't done a word count of how many places the word segregation appears in the text of the CRPD. But certainly the notion of inclusion is branded on the front, back, side and centre of the CRPD. And that really inclines us toward common spaces. They may not be exactly similar, but they would be common spaces into which people with disabilities and other citizens can converge, and a sort of an assumption that if we act on the medical model, if we fixate on the impairment, if we develop services simply around the impairment and therefore congregate people who simply share one trait, which is the impairment, that's a recipe for disaster. You're inviting violence, exploitation and abuse. You're putting people into   in communicative spaces in which they're likely to be forgotten about. 

And even tiny things like we value in our own homes, our apartments pictures that hold our sense of identity. The way we paint our window frame to invite the community, you know, the passer by in, these things are deracinated. They're simply not present in those collective settings. And the truth of the matter is that the man or the woman on the street when they pass by such segregated facilities, they're not going to see the person first. They're only going to see the trait that connects people. There's no incentive to reach beyond that and to, as it were, express our shared citizenship and our common humanity. 

That's why I think Article 8 of the Convention is very important. It requires states to sensitise persons to the rights of people with disabilities. You're not likely to find a conducive environment to that once you segregate people or seal them off or mark them as different and then therefore keep them apart as different. 

MS EASTMAN:  I want to get to a topic that's quite challenging and that is around segregation. We have heard, for example, in looking at the issues of education that some parents may wish to choose for their children to attend what we call a special school but may in its nature be segregated, so exclusively for children or young people with a particular disability. We also hear the importance of inclusive education. So, this issue of choice and inclusion is challenging in some ways. How do we navigate around these concepts so that we don't see things as strict binary one or the other? 

MR QUINN:  Yes. Very good point. The Convention has a sort of an interesting double think within it. First of all, it gives pride of place to a philosophy of inclusion in order to roll back some of the exclusionary tendencies of the past. At one and the same time, it gives pride of place to autonomy and choice, and that indeed may be choices made by a family as well as choices made by the individual. 

So, how to police the boundary between these two? I don't think there's a formulaic answer. Here's my approach to it:  in terms of public policy, that is to say, spending of taxpayers' money, I think there is no room for a segregationist ethic, there is no room for individual choice to opt out of that. When it comes to individuals purchasing their own option, so to speak, or let's say signing into a private fee paying school, I would say we should be loath to eliminate that option, but at one and the same time, if it's not really fully in keeping with public policy, I would try and disincentivise people from making that choice and to try and open up the architecture of choice so that it's logical to them to actually place their children in a more inclusive, albeit private setting. 

And I think the reason why that's justifiable as a public policy posture is that education, for example, isn't just something for the individual. It goes to the quality of our communal life. It goes to the ethic of tolerance and democratic society. It's incredibly important for citizenship in later life that all children are exposed to human difference, and therefore, as a policy maker, although I wouldn't rule out the   some latitude for individual choice, I would rig our public policy to try and make that less attractive than might otherwise be. I know that's not   I beg your pardon.

MS EASTMAN:  If the   is the idea of an institutional architecture that the starting point is not a starting point based on segregation; is that right? 

MR QUINN:  Absolutely. Absolutely. 

MS EASTMAN:  Have you seen any examples in your travels and your work about the institutional architecture away from segregated settings actually work in practice? 

MR QUINN:  Well, you know, we're all at the beginning of a transition, because we can have great law and public policy on the books, but the reality is that over the past 60, 70 or 80 years, we've built up massive service systems that are actually designed to implement a segregationist ethic. Turning that around is going to take a lot of intentionality, a lot of effort, a lot of movement of budgets, a lot of innovation. 

There will be many mistakes made and it's important that the political branch gives cover to the administration to innovate its way through in re designing how these services are delivered. As I mentioned earlier, we're just back from a country visit to Jordan, and Jordan has an amazing de institutionalisation program in place and are very, very committed to making it work and to re designing services to give parents the assurance in the long term that, to put it bluntly, when they pass, that their children will not revert back into institutions and so forth. 

They have particular problem in countries like Jordan that you don't share. For example, a majority of people in institutions in Jordan are not Jordanian citizens. They are rich children, so to speak, of families in the Gulf region, which causes a lot of ethical dilemmas for the Jordanian Government about how fast it moves, because if it moves too fast, these people could be decanted back into countries in which there's no option but institutionalisation. 

So, yes, there's a lot of movement around the world and, in fact   and I'll stop here because I know I tend to talk too long   the European Union Fundamental Rights Agency, which is a body tasked to give evidence based advice to EU member States and the EU institutions, about four years ago did a massive project on how to shift budgets in order to enable community living and the de institutionalisation process to work. 

So, it's getting as real as that. That's where people are innovating. They're looking for solutions. They're not holding back on the theory that it's so difficult to do, let's just leave it to chance. They're actually putting in place the building blocks to make it work in the future. From my point of view, so long as you're on the right journey, that's the incredibly important thing. 

MS EASTMAN:  I want to turn to a slightly different topic now, and it's picking up the work that Article 9 and Article 12 do in the CRPD. Our Royal Commissioners recently have examined the experience of people whose lives are subject to substitute decision making and the move towards supported decision making, and the importance of autonomy and independence in a person's life. This is an area that you've written about in some detail. You talk about the concept of personhood, the importance of developing decision making skills, if I can use a fairly basic description of that, and that these are the keys to achieving inclusion. Do you want to speak to the importance of Article 12 and perhaps Article 19 about personhood and about autonomy? 

MR QUINN:  Yes, of course. And just to back up a little bit, when we were approaching the drafting of the UN Treaty, we thought it was going to be just one more thematic equality treaty in the UN basket. Civil society quite rightly held us up and said hang on a minute, if we tackle the symptoms of inequality, if we try and roll it back, let's say, in the area of education or employment, we're just doing that, we're tackling the symptoms. The root cause was the discounting of the humanity of people with disabilities, therefore, what we have to do front and centre is to accentuate the common humanity, the common subjectivity of persons with disabilities with others. 

And that really means restoring to people with disabilities power over their own lives, autonomous decision making over their own lives, in as much as any of us have that capacity, and, therefore, to ground the entire Convention on a theory of personhood. And closely related to that is Article 19 because Article 19   well, Article 12 is how to be your own person, but Article 19 is how to be your own person in the world and connected to the world, and that's why I deconstruct Article 19 in terms of the concept of home. It's very implicit throughout, really. It's something all of us take for granted, but it's particularly problematical for people with disabilities. 

We look to home as a place where we can form our identity in close association with others. We view it as a place of repose and protection, but also, crucially, a place where our sense of self and personhood evolves over time, and we also view our home as something spatially connected to the community because we're social animals as well as individual animal. So, I see   and it's not just me   many, many commentators see Articles 12 and Article 19 as umbilically linked and as forming what we lawyers call the very object and purpose of the Convention, and when you think about it, that's the heart of the flip between the medical model and the human rights model. Everything else can be built on top of that, but that is the heart. 

MS EASTMAN:  I think the Commissioners who have given me questions, I've picked up those questions in the course of the discussion. I wanted to turn to your conclusions, which is page 13, and it's drawing the strands together and some tentative conclusions that you make. So, I want to just test with you, are they tentative and, if so, why, can we be more conclusive about them. So, the first is that you say ideas have been shifting for the past 30 to 40 years. They have shifted and continue to shift, even if there was no CRPD, but the CRPD confirms these movements and tries to clarify them. Do you mean by that that the CRPD in a sense crystallises what you said earlier as the sort of social change movement and a movement that was already there from medical to social model, but does this mean that we stop with the CRPD. Is that what you're saying there? 

MR QUINN:  Very good question. You know, when you go back and look at Thomas Kuhn's book on The Structure of Scientific Revolutions, he talked about paradigm shifts as opening up our mental imagination and transforming it. He didn't mean to say that the paradigm ends at a particular point in time. I'm sort of very much of his mind that the paradigm shift toward the human rights model expands our policy imagination. It doesn't imprison it. In fact, the Convention itself on the face actively invites states to exercise their own political imagination. 

I do think it's important, though, to not fixate on the Convention simply as a narrow lawyer's instrument. I think that would be falling into the trap of saying we have to change because we have to conform, legally speaking, to the Convention. I think the real moral force of the Convention is that it carries with it the weight of 30 years of policy shifts right around the world, and, really, that's what we should be aiming at. We should be trying to catch the tide of what this policy flip actually is, work it out for ourselves. Use the Convention as a signpost that keeps us honest and on the right track. Not to get too hide bound in its legal niceties but to actually own it, to internalise its values for ourselves and then to commit to a process of change. 

And there was a great administrative lawyer in Harvard in the 1950s, Lon Fuller, who once famously said that if people are taught to do things the right way, they generally do the right things. So, I view the Treaty as something that's like a heuristic device that helps States actually concentrate their minds on what's important, and what's important is making the switch away from fixating on impairment to actually focusing on the common humanity of people with disabilities. 

MS EASTMAN:  So you've spoken about not only the CRPD but the other international conventions, and one challenge the CRPD raises is about bringing multi factors or intersectional experiences together. So, the CRPD speaks to the experience of women and children. We in the Royal Commission have also looked at the experience of First Nations people and our Indigenous communities. We've tried to examine the experience of people from migrant or culturally and linguistically diverse backgrounds or people who identify as people of faith or LGBTI community members. Where does the intersectional lens fit into the CRPD as it presently operates and is this an example of the CRPD needing to evolve to capture the full life experience of people with disability? 

MR QUINN:  Yes. I think, if I may revert to Arnardóttir's work on what she calls multidimensional disadvantage equality, that's what she's trying to get at. She's trying to get at the layers upon layers of disadvantage that people with disabilities and other identities have accumulated throughout their life journey. And human rights law is notorious for not really capturing well all of these vital intersectional dimensions. 

The truth of the matter is we're not reducible as human beings to one trait, no matter how prominent it is, like an impairment or gender and so forth. We are a microcosm of many different traits and indicators, and our life journey reflects that. Now, one of the flaws of the traditional equality approach was that, as I said, it is synchronic. It looks at the relative treatment here and now, and it's not diachronic.  It doesn't open up your life's journey to make it relevant to decisions that are being made at the moment. 

The nice thing about the Disability Treaty is that it's one of the first treaties to at least make a decent stab at intersectionality. Hand on heart, the big thing we missed   and it was simply because people were not in the room drafting the treaty   was the intersection between old age and disability.  And when you think about it, many, many, many of the policy defaults that we decry in the area of disability also port over to older people. 

And it's very interesting   and I digress, I realise, momentarily, but there are a number of countries in the world for which long term care for people with dementia absolutely does not mean institutionalisation or placing older people in congregated settings. I realise that's a separate debate. It's one that's happening in the process in the UN system for thinking about drafting a treaty on the rights of older people, but I personally regret we did not make a good enough stab at that dimension of intersectionality in the treaty. So, yes, it is incredibly important. 

And, by the way, one of the thematic papers I want to develop in my role as Special Rapporteur is going to be on Indigenous persons with disabilities, which probably won't happen for at least a year, but it's one of my personal ambitions. 

MS EASTMAN:  Thank you. The second conclusion that you express is the switch at the levels of ideas from the medical model to the social model to the human rights model, being ideas with concrete implications with respect to traditional disability policy, especially for its tolerance for segregation. And you say:

    "The new predicate personhood inclusion and inclusive equality all point away from segregationist solutions of the past."

I suppose the question is, on that, if that's the conclusion, then how do you persuade policy makers to make the changes to move away from segregation? And this might touch on the third point as well. I suppose the question is, is there a pull or an undertow back to segregation as settings and as options in the way policy is made? 

MR QUINN:  Yes, I think there always is and that's in the nature of law reform, isn't it? Because although you may have changed the surface understanding of the law, there is always a drag backward because old paradigms don't just die, they linger on with a half life. And so there is a period   I would say it's actually a number of decades   where we have to push forward but also keep fighting against these tendencies towards segregation. 

I think the really interesting proof of that was COVID 19 right around the world, because it's in times of crises you can see whether the new foundations are solid or whether, in fact, the pull back is so incredibly powerful that it renders almost obsolete any new philosophy, and we saw that right around the world during COVID 19. In other words, we saw just how powerful the undertow backwards always is. 

So I think States have a difficult challenge. I mean, one is to use the change to nurture and cultivate public opinion, such that any backsliding toward a very traditional model is simply not tolerable. It's not the reflex of the community at large, and not just people with disabilities. This is an intergenerational culture shift, but the difficulty of achieving it shouldn't hold us back from committing to beginning on that journey wholeheartedly. 

MS EASTMAN:  The third conclusion speaks to the human rights model and you say:

    "Persons with disabilities are to be approached first as persons with equal rights and expectations and secondly as persons with impairment that might require special attention."

Does this fit into what we might say is the mode of substantive equality but going further than just to achieve equal outcomes, but to recognise the special attention to realise human rights? Is that what you're saying in terms of the human rights model? 

MR QUINN:  Yes. I think the primary departure point is to look at the person behind the mask, to commit to   to commit to human flourishing, because you never know whether the kid that you're dealing with is going to be a future Einstein. Einstein apparently failed maths in high school, and yet we didn't exclude him, and thank God. But the impairment, like any other trait, can still be important for ancillary policy, particularly to give particular supports and treatment as is required per the actual impairment. 

But the important point is not to begin with the impairment, to begin with the human being, and what we hope and expect from each other, from every citizen and to get the best from every citizen and to give the best opportunities to every citizen. 

MS EASTMAN:  And the final conclusion you say this:

    "New policy defaults will have to live with the old policy defaults at least for a time. It will be hard to eradicate them from law and policy. Too much has grown up over time, especially in our service paradigms, to be simply airbrushed, but what matters is to commit to the new policy default and to a thorough ongoing examination of the practices past and a commitment to rebuild them from the ground up."

That sounds very ambitious. What tolerance is there for living with the old policy defaults for at least a time? Some people might say we've lived with this for our whole lives and for a very long time. There needs to be an urgency in change. But you seem to be saying temper that urgency, because it may take time to eradicate the old before you can achieve the new; is that right? 

MR QUINN:  Well, I think, again getting back to the nature of the Treaty, it contains obligations of result, that is to say, we should put our   set our faces against any exclusionary philosophy and in favour of an inclusionary philosophy. At the same time, it contains obligations of means. It plots the steps, the granular steps, we're supposed to take in that direction and it leaves a massive amount of space for innovation and for creativity. 

What I'm basically saying is that the huge ship that we've constructed over the past 50, 60, 70 years, that's the ship that's going to take time to turn around. We've got to start because if you don't start, that ship of services, the paradigm that it encapsulates, encodes an old way of thinking, particularly an exclusionary way of thinking. So, turning that ship around is not going to be easy, but that's the challenge for every single country in the world, and we can learn from each other how we do this. We can share our experiences. And I think the attitude for the Australian Government, for any government, should be how can I set the standards here and not simply follow them and accelerate the process of change? 

And it is a process. So, therefore, what really counts is the coproduction of that process with the society directly affected by it. I've spoken on some occasions about professional empathy, for example, in the government of British Columbia, I believe it is, in Canada. If there is to be a policy shift in a certain field, then policy makers, the senior civil servants, are expected to spend time with a family that might be impacted by the policy shift. So, there are clever ways in which we can ensure that the process of change is steered in the right direction and continues at the right pace. 

By the way, this gets us back to the whole debate about progressive realisation under international human rights law, which is, I think, a very, very important debate in the context of disability. 

MS EASTMAN:  Professor Quinn, I'm mindful of your commitments in the northern hemisphere. Thank you very much for engaging in the discussion with me today. We will share your paper with the followers of the Royal Commission. That will be up on our Royal Commission website soon, but our thanks for your time and your discussion today. Thank you, Commissioners. 

MR QUINN:  It's been an honour and a pleasure.  Thank you so much.

CHAIR:  Professor Quinn, I add my thanks and those of the Commissioners present with me today to you for your appearance. We're very grateful to you. I must say, I was most interested to see your enthusiasm for Oliver Wendell Holmes for whom you have two quotations. He, of course, was the judge in Buck v Bell, who said three generations of imbecile are enough    know that wisdom can be combined with other characteristics as well sometimes. Thank you very much for your evidence. 

MR QUINN:  He was a man full of contradictions but some brilliant insights.

CHAIR:  As so many of us are, Professor Quinn. 

MR QUINN:  Okay. Thank you so much for inviting me.

CHAIR:  Thank you. 

<THE WITNESS WITHDREW 

MS EASTMAN:  That just leaves me to ask you to receive Professor Quinn's statement, or he's described it as a submission, into evidence and mark it Exhibit 31.003.

CHAIR:  Point, sorry? 

MS EASTMAN:  003. 

CHAIR:  That can be done. Thank you very much. 

<EXHIBIT 31.003 SUBMISSION OF GERARD QUINN.

CHAIR:  Does that conclude our proceedings today?

MS EASTMAN:  Today, and we'll resume at 9.45 tomorrow with Dylan Alcott.

CHAIR:  Brisbane time. 

MS EASTMAN:  Brisbane time. Thank you.

CHAIR:  Yes, thank you. We will now adjourn.

ADJOURNED at 3.14 PM UNTIL TUESDAY, 13 DECEMBER 2022 at 9.45 AM