Public hearing 31 - Vision for an inclusive Australia - Day 3
Video transcript
CHAIR: Good morning, everybody, both to those who are in the hearing room in Brisbane and those who may be following us on the live stream. This is the third day of Public hearing 31 of the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. This week we are dealing with the theme, a vision for an inclusive Australia. We commence, as always, with the Acknowledgement of Country and I'll ask Commissioner Mason to make the Acknowledgement of Country.
COMMISSIONER MASON: Thank you. We acknowledge Meanjin Brisbane. We recognise the Country north and south of the Brisbane River as the home of both Turrbal and Jagera nations. We acknowledge the Turrbal and the Jagera nations as the traditional custodians and owners of the land upon which this Royal Commission is sitting. We acknowledge and pay our deep respect to Elders past and present, and we acknowledge First Nations young people who one day will take their place as Elders. We extend that respect to all First Nations, and we acknowledge their enduring connection to land, sky, seas and waterways. We pay our deep respect to First Nations people here today and who are following this Public hearing online, on the mainland and on islands, including Tasmania and Torres Strait, especially Elders, parents and young people with disability. Thank you, Chair.
CHAIR: Thank you very much, Commissioner Mason. Yes, Ms Eastman.
MS EASTMAN: Good morning, Commissioners, and to everyone following the proceeding in the room and also online. So, Mr Fraser is going to take our first witness this morning. Thank you, Chair.
CHAIR: Thank you very much. Yes, Mr Fraser.
MR FRASER: Thank you, Chair. Chair, the first witness this morning is Dr Fiona Rillotta and Dr Rillotta has been affirmed already.
<FIONA RILLOTTA, CALLED
CHAIR: Yes. Dr Rillotta, thank you very much for coming to the Royal Commission in Brisbane to give your evidence today. Thank you also for your statement which we have, and each of us has read that statement. We're grateful to you for that. If you would be good enough to follow Mr Fraser, he will now ask you some questions.
DR RILLOTTA: Yes.
<EXAMINATION BY MR FRASER
MR FRASER: Thank you. You are Dr Fiona Rillotta.
DR RILLOTTA: Yes.
MR FRASER: And you have provided a written statement to this Commission dated 5 December 2022?
DR RILLOTTA: Correct.
MR FRASER: Are the contents of that statement true and correct to the best of your knowledge and belief?
DR RILLOTTA: Yes.
MR FRASER: And you are a senior lecturer at Flinders University within the College of Nursing and Health Sciences; is that correct?
DR RILLOTTA: Correct.
MR FRASER: How long have you held that position?
DR RILLOTTA: Since March 2011. So, it's nearly 12 years.
MR FRASER: The focuses of your research are disability and inclusion, and, in particular, inclusion of individuals with disability; is that correct?
DR RILLOTTA: Correct. Intellectual disability, sorry.
MR FRASER: And with that in mind, in your statement you have a copy of that there?
DR RILLOTTA: Yes.
MR FRASER: At paragraph 6, you've set out what you refer to as your vision for people with intellectual disability access in university. Can I ask what is that vision?
DR RILLOTTA: Okay. So, to start off with, I believe everyone has the right to access education at all levels, and based on my research and my work within our Up the Hill project at Flinders University, my vision is for people with intellectual disability to be afforded the same opportunities, to be able to apply for university, to be able to access university, and to be supported to succeed at university.
So I'd like to see that the university systems and structures enable, empower and facilitate access for people with all abilities, and on equal basis with their peers. And to do that I believe that universities need to be properly equipped to be able to support people with an intellectual disability, and to open their doors to more people. And this means not just by way of resources for physical access such as a ramp for a wheelchair. This means access at all levels and everywhere.
So, for example, creating Easy English versions of policy documents and instruction manuals for enrolment into university and for all the stages as part of that process.
MR FRASER: You mentioned there the Up the Hill project. Now, you're the academic adviser of the Up the Hill project; is that right?
DR RILLOTTA: That's right.
MR FRASER: Now, this is a program where persons with cognitive disability attend at university and audit subjects; is that correct?
DR RILLOTTA: That's correct.
MR FRASER: Can you tell us a little bit more about the program? How does it work day to day? What does the student do?
DR RILLOTTA: Sure. So, students with cognitive disability are partnered with a learning partner to access the university campus and to be supported to use the facilities at university. They attend lectures or they watch them and access them online. Since COVID, that's been happening a lot. They access the learning system online and they also attend some tutorials and join discussions with their peers, and they make use of the resources on the campus. So, that could be the library, the eateries, everything that the university has to offer.
MR FRASER: And is it correct that in terms of the number of subjects they audit, the course runs over the program runs over three years?
DR RILLOTTA: That's correct.
MR FRASER: And a student takes or audits one subject per semester.
DR RILLOTTA: Correct. One subject per semester.
MR FRASER: You mentioned that the participant if I call them participant of the program is paired with a learning partner. What's the role of a learning partner?
DR RILLOTTA: So the learning partners as part of the Up the Hill project are also undertaking their own studies in a particular degree. They are doing this as part of their work experience placement and they are assessed on their performance and evaluated. The degrees they're enrolled in is usually the Bachelor of Disability and Developmental Education or Bachelor of Disability and Community Inclusion. Some are enrolled in Bachelor of Behavioural Science with a major in disability. So, their purpose is to learn more about disability and to engage in that partnership with the Up the Hill project participant.
MR FRASER: And are those learning partners remunerated?
DR RILLOTTA: Learning partners are not paid but they do receive a grade towards their degree.
MR FRASER: And on average, how often how much time does a learning partner spend with a participant?
DR RILLOTTA: It's really individualised and that's up to the participant, and it can range from two hours per week through to five hours or slightly more if they decide to meet online or off campus, et cetera, so from two to five hours per week usually.
MR FRASER: Coming back to the program more generally, what's the ultimate objective of the Up the Hill program?
DR RILLOTTA: So, the program focuses on social and emotional outcomes. So, it's not focused on the intention of an employment pathway or pathways to further study. So, we really focus on self development, self confidence, self determination and building social networks as being part of that community and having that sense of belonging at a university campus.
MR FRASER: Now, the program, as I understand, was first established in around 1999. Now, why was it first established? What was the interest for it being established?
DR RILLOTTA: Sure. So, around 23 years ago, there was a pilot program established by an Honours student as part of her thesis. And it was recognised that people with intellectual disability don't usually transition to university like their peers when they finish school, and the question was why not. And also it was recognised that people with an intellectual disability can also benefit from the supports and services that a university offers, and once again, so the question was proposed as to let's give this a try and see how it goes. And the reason why people with intellectual disability are not usually seen to transition to university is because society never really
MR FRASER: Can I just get you to slow down a little bit just for the benefit of our interpreters. Thank you.
DR RILLOTTA: Sure. So, the reason they thought people with intellectual disability couldn't go to university was because society doesn't often believe that people with intellectual disability could or should go to university because of their abilities. And so there was very low expectations of post school options for people with intellectual disability.
MR FRASER: Now, coming to the present day program, who is able to participate in the program? Who's eligible?
DR RILLOTTA: So, adults, so 18 plus, who have a cognitive disability and who are eligible for NDIS.
MR FRASER: And what do you see as being the benefits of the program in terms of increasing inclusion at the university?
DR RILLOTTA: So, from our research and from what our participants tell us and the development we see in them over the three years, we recognise that it's about being part of an existing mainstream community. It's not about a separate program or being special, specialised or segregated. It's about being part of the community and having that sense of belonging. We recognise that the participants build their self confidence because they're interacting with their peers. They participate in classes in the same way that other students do. For example, in a tutorial when students are put into small group discussions, they'll be included in those small groups and they benefit from the learning from each other. So, it's a two way, with the mainstream students and the students with intellectual disability learn together.
MR FRASER: And do you perceive or have you observed the benefits for teaching staff as well?
DR RILLOTTA: Absolutely. So, for teaching staff, we've got some really great examples where they've been able to increase their awareness of what a student with intellectual disability are capable of. Initially, there may be some lack of knowledge, lack of awareness, some attitudinal concerns around expectations of people with intellectual disability, and they might think, "They can't participate in my class. That won't be possible. They'll be disruptive. They won't understand the content", et cetera.
However, once they're given the opportunity, by the end of it, they actually recognise the abilities of people with intellectual disability. And an example of that is one staff member who at first didn't really want the person in their class, was concerned, wasn't sure that it was the right fit, et cetera. However, by the end of it, that teaching staff member opened their eyes to actually recognise that the student in her class was really talented and subsequently invited her to an art to put her work at an arts exhibition with her peers.
So, actually recognising those skills, those abilities, those talents, just like the other students, and being invited to an exhibition in that way, just like the other students as well. So, really big attitudinal shift as a result of having that student in their class.
MR FRASER: Are you aware of any similar programs, whether operated by or run by government or other universities, in Australia, similar to the Up the Hill program?
DR RILLOTTA: So, the only other program that I am aware of is the Uni to Beyond program at the University of Sydney, run by the Centre for Disability Studies and so there are only two of Australia's 43 universities that have such support in place for students with intellectual disability. I believe other universities don't have it because they have lack of awareness or lack of resourcing or they don't believe that it's sort of part of their core business.
MR FRASER: I'll come back to your university and your program. How many participants are there currently in the program?
DR RILLOTTA: There are currently 14. Next year there will be 15.
MR FRASER: And how many participants have been through the program?
DR RILLOTTA: So we've had about 46 who commenced and around about 30 who have graduated after the three years.
MR FRASER: Is there a wait list for the program?
DR RILLOTTA: Correct. There's a lot of interest. We haven't been able to provide entry for all of those who've been interested. There's probably around 35 people on that waiting list who are ready to go and eligible to join the program. Some people have needed to wait maybe two years before they can actually commence.
MR FRASER: Now, are participants in the program, do they enrol those as students as such, or are they audit the program?
DR RILLOTTA: No, that's right. They do not enrol as students. They are considered as auditing students, which means they're at university participating in a topic for personal interest. This means they do not complete the assessment tasks, they're not receiving a grade, and they're not transitioning to the next stages of the degree program, and the subjects can vary across disciplines over the three years.
MR FRASER: Are there any other consequences as a result of not being an enrolled student in terms of access to services or things like that?
DR RILLOTTA: Sure. Absolutely. The access to services at the university usually need to be negotiated so that means the online learning system, the library borrowing rights and those kinds of things have been negotiated over time. However, the students don't access our government funded disability services at the university because they're not enrolled.
MR FRASER: Does the program have any particular focus or any aspect that deals with pathways or transitions to future education or future employment?
DR RILLOTTA: Not at this stage. We do recognise this as one of our limitations and areas for growth. We are connected in with the University Specialist Employment Partnership Program which is available to Flinders University students who have a disability, and that service aims to connect the student or graduate to employment and support that towards the end of their degree. So, the University Specialist Employment Partnership consultant is on campus and meets with Up the Hill project participants if the participant would like to engage with that. But it's not compulsory and it's really up to the individual if they're interested in exploring career pathways once they finish Up the Hill project.
MR FRASER: So, in terms of what happens when a participant completes the program, what does that look like at the end of the program? What do they receive if they
DR RILLOTTA: So, they do participate in a university graduation ceremony, a formal ceremony with a gown and cross the stage and receive a certificate of completion after those three years. So, there's another example of inclusion in a university event. However, once again, that's not a qualification because they haven't been enrolled; they haven't been completing assessments towards the credit towards the degree. What we do know from our research is that the participants achieve a lot of social, emotional outcomes with their self confidence and independence, and great examples of improving their independence over time. But again, it's not a qualification which can then lead on to employment.
MR FRASER: Alright. Let me ask you some more questions about the ongoing review or evaluation of the program.
DR RILLOTTA: Ongoing what, sorry?
MR FRASER: Ongoing review. Is the program the subject of ongoing evaluation?
DR RILLOTTA: Yeah. Absolutely. So, there have been a number of research projects over the past few years, and I'd like to acknowledge the co researchers who contribute to those projects, and they are graduates of the Up the Hill project who worked in partnership with me on developing those projects, and helping with the data collection, interviewing, the analysis of the data and also the dissemination of the findings and the recommendations.
So, this isn't just my work on my own. I'd like to acknowledge that. And as I said, there have been a number of projects. Which one would you like me to start with or do you want me to talk about all of them?
MR FRASER: I suppose in terms of the process of review, you talk to participants and run surveys.
DR RILLOTTA: Mm hmm.
MR FRASER: And what else do you do to gather feedback on the program?
DR RILLOTTA: Sure. We also have an advisory group and that's made up of various stakeholders, so first and foremost, people with intellectual disability, current students, graduates and also family members and teaching staff, other stakeholders within the university. The role of the advisory group is to advise the program for continuous improvement and to really support that development in terms of what's working well and what could be done differently. They base that on the self reports of the participants, as well as feedback from the project officer and family members and other people who've had the experience of going through the program. So, that's the advisory group which informs those reviews.
MR FRASER: There was a specific research project you undertook you refer to at paragraph 32 of your statement. What was involved in that research project? What was its objective and then, secondly, what did it demonstrate?
DR RILLOTTA: Yeah, great. This is one of the first research projects which investigated the expectation and experiences of the Up the Hill project participants and also their learning partners. So, we talked to learning partners as well. And the results of that project actually showed that participants increased their self determination, so the growth in confidence. One example is of being able to give a presentation at the end of the semester. And also found that the Up the Hill project helped some students to identify future aspirations and goals in terms of perhaps career aspirations.
And one really great example which came about from our research was an opportunity where one student was able to do a placement, a work placement, as part of the Up the Hill project in her final semester. The topic she chose to do was a placement at a school. And that there actually met her lifelong dream of wanting to be a teacher's assistant. So, she appreciated the opportunity to have that experience, and it's evidence of working towards future aspirations and goals.
MR FRASER: And has the program itself been the subject of any broader study? And here I'm looking at paragraph what I want to ask you about is qualitative study that you refer to at paragraph 34. Can you tell the Commission what this study was and what it revealed what its findings revealed to you?
DR RILLOTTA: Sure. So, once again acknowledging the collaboration with an Honours student on this project. The aim of this project was to explore what the graduates of the Up the Hill project do when they complete the program. So, we invited all graduates, which at the time of the study was around about 30, and we had six who participated in the research. So, a small group.
However, what we found was that some had continued their education. So, had gone down the pathway of entering into foundation studies at Flinders uni, which then leads on to entering into a bachelor. Or some continued to audit outside of the Up the Hill project, so they had completed their three years and then they wanted to still continue exploring other subjects at the university and appreciated still being connected to that university with their sense of belonging.
Another thing we found was increase in social networks. So, this speaks to the social and emotional outcomes of by very nature being part of a university environment. And what we found was that many of the graduates had remained in contact with their mentors or learning partners, and they had remained in contact with university staff. However, what was recognised was that graduates were not keeping in touch with other peers. So, they may have met some people in a class, they may have made a friend while they were doing a particular subject for one semester, but they didn't keep in touch. So, none of those friendships were maintained over time. Their main connections were with their previous learning partners or university staff.
So, I'll just speak to one more example with the connections with university staff, we found that a few graduates, actually, were invited back to participate in various opportunities. So, one came back to the university to do some guest lecturing and to speak about their experiences. One was invited to write a book chapter. Another wrote an actual book and published that. And one who graduated quite some time ago was invited to produce a film as well. And that was after graduating. So, once again, the teaching staff member there recognised what the person with intellectual disability was capable of, noticed her interest and invited her back to that opportunity to produce that.
MR FRASER: So based on the this research that you've been talking about, do you consider that the program is enhancing inclusion for people with disabilities in university?
DR RILLOTTA: Yes, it is, but it's not enough because, as you heard, there's 14 participants, and the university's a very big institute. So, the opportunity to have an impact is quite minimal across various disciplines and across various parts of the university. We might be speaking about one particular subject, one particular teaching staff member in one particular college or department of the uni. And it more needs to be done in order for more people to acknowledge that people with an intellectual disability or cognitive disability can be included in those university settings.
MR FRASER: So in terms of a broader you refer in your statement in paragraph 37 to some research undertaken this year with the Centre for Disability Studies. Can I ask you to tell the Commission about that research?
DR RILLOTTA: Yeah. Absolutely. So, firstly, just to acknowledge that's a national disability research partnership project, where we collaborated with the University of Sydney. My colleagues are Professor Mary Anne O'Donovan and Dr Nikki Wedgwood. And the aim of our research project was about evaluating both programs so that we could produce a national perspective that wasn't just about one State. It was about both programs.
We conducted a literature review of international literature. We reviewed participant demographic over the life of both programs. So, who has been joining the program, who has not been joining the program in terms of age range, geographical location, which topics or subjects they've been interested in, how many have graduated, how many withdrew, et cetera. We also undertook interviews with graduates of both of the programs and as part of that project, as I said before, we employed two co researchers who were graduates, one graduate from the Up the Hill project and one graduate from the Uni to Beyond program.
And they participated in all the elements of the research, which also led on to our next stage in that project which was to consult with an expert advisory committee. That expert advisory committee included eight to 10 people at each meeting, and eight to 10 people with intellectual disability. So, they explored our results. They provided further insight into those results. They discussed the findings and helped with the production of Easy English summaries of our research.
We also, as part of that project, conducted two national round tables with interested stakeholders from all over Australia. So, we invited other representatives from other universities, representatives from Universities Australia and we established a community of practice moving forward.
MR FRASER: And why was it important or perceived to be important that this progress be undertaken? What was the purpose of it?
DR RILLOTTA: Yeah. So, for a long time, we've been saying and the evidence has been telling us that more needs to be done. And that more universities should be doing this. And we needed to question why are more universities not doing this, and we needed to scope the interest nationally in terms of could this be feasible across the country? What would be needed in order for more people with intellectual disability to access universities across the whole country? Not just Flinders Uni and Sydney Uni. And so, we put this together to inform policy and inform government and universities in terms of what our findings suggest, and the recommendations that we've developed into a position paper with all of our collaborators.
MR FRASER: Now, I understand that that position paper hasn't yet been published.
DR RILLOTTA: Not quite.
MR FRASER: But are you able to tell the Commission in broad terms about what those recommendations
DR RILLOTTA: Absolutely. Yeah. So, we have divided our recommendations into recommendations for Australian government so federal, state and territory and I'm just going to refer to a couple of notes here from that position paper. Some of the main points are around enhancing policy and having a national approach to supporting students with intellectual disability. Also suggesting that primary and secondary schools become involved with recognising university as a pathway for students with cognitive disability.
We've recommended that more funding is needed, more university pathways are required, and offering transition planning and also developing partnerships with the private sector organisations. So, these are some of those recommendations for governments, state, territory and federal and then we recommend for Australian universities to foster institutional and cultural change.
So, this means that inclusion of students with disabilities should be part of their core business. It should be the norm and not the exception for all universities. And all students need to be supported appropriately to achieve their educational outcomes. Universities need to offer more choice and flexibility in terms of support, and foster greater awareness and invest in things like staff training to promote that cultural change across the whole institute.
MR FRASER: In terms of the Up the Hill program at the moment, it's a requirement of eligibility a person be an NDIS participant.
DR RILLOTTA: Mm hmm.
MR FRASER: The participant accesses their own individual NDIS funding to participate in the program; is that right?
DR RILLOTTA: That's right. Part of their NDIS plan, yes.
MR FRASER: Aside from that what are the are there any other additional costs for a participant?
DR RILLOTTA: So, there's a standard out of pocket expenses such as purchasing textbooks or if the person might require support on campus, or support with like a support worker or support with transport, then they pay for all of that. There used to be an auditing fee which it is no longer required to audit a topic at university. But what we recognise is, moving forward, that we'd like to see models where it's not just funded or resourced from an individual's NDIS plan.
So, universities need to recognise their responsibility in providing that support, and government needs to provide resources to be able to fund the additional supports that might be required as well, aside from a person's individual NDIS plan.
MR FRASER: If I can ask you about your what you have looking to the future of the program, are there plans to introduce a pathway to access curriculum, the full curriculum as an enrolled student as contrasted to just auditing the subject?
DR RILLOTTA: So, at Flinders Uni, we have plans in place to establish a diploma and this is in recognition of one of our biggest findings around how the Up the Hill project and auditing for three years does not provide a qualification, which subsequently may not lead on to further opportunities. So, with a diploma, it will be a recognised qualification at university level, and it will be tailored in terms of having including a work experience component, including a portfolio as well as optional topics that the students are interested in across the university.
So, we are working on establishing a diploma pathway. That will not replace the Up the Hill project. It will be in line with the Up the Hill project, because we do recognise that some participants actually not interested in getting that qualification, don't necessarily want to do the assignments. Just really appreciate the sense of belonging and the community feel of being at university, enjoy the social elements of the Up the Hill project. So, we will still have the Up the Hill project but also have a diploma for those who are interested in pursuing further education, which can then lead on to employment pathways as well. The idea of a diploma is it could be built upon as well into a bachelor after that too.
MR FRASER: In terms of that new program that you're talking about, will there need to be some changes or you need to look at entry requirements to participants to be able to enrol as full students?
DR RILLOTTA: Yes. Absolutely. So, we're working with our what's called Pathways Team at Flinders Uni to acknowledge students who may not enter university in the traditional way of an ATAR from school. They may be entering as a mature age student or they may not have completed high school. So, we're exploring ways of flexible pathways to entry requirements. We also acknowledge that we need to further build the capacity of the university, in particular the staff in terms of institutional whole of institution attitudes around expectations of people with intellectual disability.
So, this ranges from our e Learning team, the IT team, through to the library staff, the student support services, et cetera. Everything, even the staff at the cafe for that matter, need to actually recognise that people with an intellectual disability can and should be at university, rather than going with their perhaps their lower expectation or their predisposition that students with intellectual disability shouldn't be here or can't be here or don't belong here.
So, we're actually recognising that we need to build capacity in that way to be able to provide appropriate wraparound supports for the students to succeed.
MR FRASER: Can I ask you a question about scalability. Do you think with the program that's run at Flinders University, the Up the Hill program, do you think it would be possible for that type of program to be replicated in other universities across the country?
DR RILLOTTA: Yes, I believe it can be. I'd like to acknowledge the use of the word "program" as well. I think in terms of a vision for inclusion, and inclusion at universities, it shouldn't be up to a program specifically to be offering a program, per se. It should be up to the university as a whole to be providing that support. And universities and government really need to explore how that can happen with that as I said before, not relying on the individual's NDIS funding but to have the supports in place at the university.
I've had interest from a range of universities and secondary schools across the country who've contacted me to find out more. So, there is interest. But, to my knowledge, none of those have eventuated into similar programs as Up the Hill or Uni to Beyond. I do believe there should be more university opportunities, and if there was sort of like a national policy oversight mandating universities to be providing this, then that would really benefit everyone, including university.
MR FRASER: Do you have any knowledge about whether universities are generally resistant to admitting people with intellectual disabilities?
DR RILLOTTA: Whether universities sorry, repeat that.
MR FRASER: Are generally resistant to admitting people with intellectual disabilities?
DR RILLOTTA: Look, I think and this is my own personal opinion here. I think it's about, as I've said a few times, not recognising what people with an intellectual disability are capable of. So, it comes back down to the expectation. So, as soon as someone who has limited experience or knowledge about intellectual disability is asked or proposed the idea of could they come to university, their immediate response may be, "What do you mean? How? Why? No way. That's not possible. They're too disabled to be able to do that." Those kinds of perception might be at play.
So, it's about challenging that to break down those system barriers to show other universities that they can open up their doors to more students.
MR FRASER: If I can, in terms of my final question, if I can take you back to the evidence you gave at the beginning of your evidence this morning, about your vision for access, et cetera, for people with intellectual disability attending universities. What do you think is needed for that vision to be realised?
DR RILLOTTA: Well, I've made a few notes as well just to reflect further on what I said at the beginning, and I want to emphasise once again that it's not necessarily about there being a program, because that is not full inclusion. So, I think when we're talking about full inclusion, we need to be doing a lot more. It's not just about, as I said, a physical access, resourcing a new ramp, et cetera. It's really about looking across the entire structure and system of the university and universities in general, higher education in general, and exploring what actually needs to be done to make sure that support's individualised so the person can succeed and can have a good experience.
The government needs to resource all universities so it's not just two out of the 43 who are thinking this might be a good idea. It's not just about it being a good idea. It's actually about it being a requirement. That's what needed. More work is needed to upskill the staff, to promote culture change so, some staff may be concerned about their workloads, how will I find time to provide that additional support, and so there needs to be change in that area as well where that sort of thing is resourced. And I think it starts with the government in terms of providing that resource to all universities to make it a requirement so it becomes the norm and not the exception, as I said before.
MR FRASER: Is there anything further that you wanted to add to
DR RILLOTTA: I think I feel like I've said everything I needed to. Yeah, I think it's all good. Thank you.
MR FRASER: To conclude, Chair, I'll tender Dr Rillotta's statement and ask that it be marked at 31 008 and also the accompanying curriculum vitae be marked as 31 008.1.
CHAIR: Yes, both of those documents can be admitted into evidence with those markings.
<EXHIBIT 31 008 STATEMENT OF FIONA RILLOTTA DATED 05/12/2022
<EXHIBIT 31 008.1 CURRICULUM VITAE OF FIONA RILLOTTA
CHAIR: Dr Rillotta, thank you very much for your evidence, and I hope you have had the opportunity to say everything you wanted to say.
DR RILLOTTA: Thank you.
CHAIR: Thank you very much for sharing all of that with us. Thank you.
DR RILLOTTA: I appreciate it. Thank you.
MR FRASER: Chair, I ask that we adjourn until 11 am.
CHAIR: Yes. We will now take an adjournment until 11 am Brisbane time. Thank you.
<THE WITNESS WITHDREW
ADJOURNED 10.48 AM
RESUMED 11.07 AM
CHAIR: Yes, Ms Tarrago.
MS TARRAGO: Thank you, Chair. Commissioners will now here from Kathleen O'Kelly Kennedy and Nikaiya Payne from the Red Dust Heelers. So, O'Kelly Kennedy is a Paralympian having competed for Australia at the women's wheelchair basketball at the Beijing Paralympics in 2008. Ms O'Kelly Kennedy was born with a limb deficiency and had an amputation at 18 months old. She is an advocate and co founder of the Red Dust Heelers, the disability inclusion arm of The Outback Academy Australia Limited, a First Nations led not for profit organisation. Ms Nikaiya Payne is a 21 year old First Nation woman from Katherine and lives with a disability. Ms Payne will share her lived experience and how she came to be involved with the Red Dust Heelers.
The Red Dust Heelers use sport as a mechanism to engage with communities broadly to challenge community attitudes and assumptions held by First Nations people with disability.
CHAIR: Ms Tarrago, just before you go further, let me welcome both of you to the Royal Commission, and thank you very much for coming to give evidence. Thank you, Ms O'Kelly Kennedy, for the statement that you've provided to the Royal Commission which we have and each of us has read. We very much appreciate your willingness to give evidence today. So, thank you very much. If you, in due course, Ms Tarrago will get round to asking you some questions and if you'd be good enough to pay attention to the questions, we'll go from there.
<KATHLEEN O'KELLY KENNEDY, CALLED
<NIKAIYA PAYNE, CALLED
<EXAMINATION BY MS TARRAGO
MS TARRAGO: Thank you, Chair. Chair, both Ms O'Kelly Kennedy and Ms Payne have already
CHAIR: Yes, thank you.
MS TARRAGO: done their oaths and affirmations. Can I start with you, Ms O'Kelly Kennedy. You're a Paralympian who's competed at the Beijing Olympics and was the first of two Australian women to receive a wheelchair basketball scholarship to the University of Illinois, and you also played professionally in Europe in men's Euro League, where you won a bronze medal.
MS O'KELLY KENNEDY: Yes.
MS TARRAGO: What are you currently training for?
MS O'KELLY KENNEDY: I'm currently training kayaking and I hope to go to the 2024 Paris Games with that as well.
MS TARRAGO: And, Nikaiya, you're a First Nations woman and your connection's through Kakadu and Arnhem Land?
MS PAYNE: Yes.
MS TARRAGO: And you're also a keen sportsperson. What sports have you been involved in?
MS PAYNE: Pretty much all the sports but at the moment I'm mainly focusing on badminton.
MS TARRAGO: Badminton?
MS PAYNE: Yes.
MS TARRAGO: You're also studying a Bachelor of Laws at the moment.
MS PAYNE: Yes.
MS TARRAGO: What led you to study law?
MS PAYNE: It was when my brother passed away in 2020. He was in a caravan accident just south of Katherine and the way his matter went through the court at the Supreme Court in Darwin, it triggered me to become practice law, just to get justice for him and any other family that went through what my family went through, and I didn't want any other family or anyone to go through what my family went through. So, that was mainly my drive.
MS TARRAGO: Thank you for sharing that. Ms O'Kelly Kennedy, I just want to start with the Red Dust Heelers, and I'll lead in a little bit of an intro before I ask you a question. You're one of the co founders of the Red Dust Heelers which, as I mentioned earlier, is the disability arm of The Outback Academy Australia, and from your statement, you talk about having an important mentor that took you into community.
MS O'KELLY KENNEDY: Mm hmm.
MS TARRAGO: And through The Outback Academy in 2013, and you were approached by First Nations members of the community, and what did they ask? What couldn't they see represented?
MS O'KELLY KENNEDY: So, I was invited along with a couple of wheelchair basketball teammates, who are also co founders, Brad Ness and Ryan Morich, to present to a group of young people who were in a pre employment program. We just shared our stories and Brad showed some footage of wheelchair basketball at the Beijing Paralympic Games. They watched that, got a bit excited because Australia went on to win gold, and that was very exciting.
At the end they had two questions. One was when do we get to try it. They all wanted to get in and crash into each other and have some fun. And the next one is where are the black fellas. And that was a very good question, very confronting question. And it led to some really wonderful conversations in that community around what we can do to make sure that well, to work towards a more inclusive future at that level, the invisibility of First Nations people with disabilities at Paralympic level but also at grassroots as well in sports and recreation.
MS TARRAGO: And was that particular community without naming the community, was it a remote or very remote community?
MS O'KELLY KENNEDY: Regional community.
CHAIR: You went with Uncle Syd?
MS O'KELLY KENNEDY: Yes.
CHAIR: Let me tell you about Uncle Syd. He wore number 5 for Carlton, and he played for Carlton in the 1970 and '72 premierships that they won. The 1970 premiership, where I was present in the front row of the outer, was regarded as one of the best grand finals ever in the AFL. Then in 1972, the score was 28.9 to 22.18, the highest scoring AFL grand final ever, and Uncle Syd played exceptionally well, so I remember Uncle Syd very well.
MS O'KELLY KENNEDY: Yes, I've known him my entire life and he has played a huge part in me seeing myself as a sportsperson too, just hearing about his struggle.
CHAIR: I should make it absolutely clear that I didn't support Carlton.
MS O'KELLY KENNEDY: He also is very good in a wheelchair and whenever we do community events and he's there, he'll jump in a wheelchair and race and he beats everybody as well. Very simply because he said, well, I just had to get down there before everybody else, so it's pretty easy. So, he's still a sportsperson to this day.
COMMISSIONER MASON: Uncle Syd is actually my uncle. Chair, his mum's from Leonora. I don't want to compete with you but since you were referring to him as Uncle Syd.
MS O'KELLY KENNEDY: He is going to love this story later.
COMMISSIONER MASON: Thank you
MS TARRAGO: Now, the Red Dust Heelers use sport to provide disability awareness and education to increase inclusion for First Nations people. Why is visibility important for First Nations communities in particular and why is disability awareness important for those communities as well?
MS O'KELLY KENNEDY: This is for me?
MS TARRAGO: Yes.
MS O'KELLY KENNEDY: Sorry. You were looking directly at me. So, from what I what I've noticed or observed as someone who isn't First Nations, the there is depending disability is, as we know, as diverse as we all are, and the experience with it, but also moving across First Nations communities, they're also just as diverse in how they look at disability or experience disability. So, it depending on where we are, there's very different approaches, but disability is definitely something that we've noticed a common theme can be the theme of shame around carrying identifying as someone with a disability. If you have a visible disability, it's often something that's covered up and you you do your best to sort of appear as though you don't have a disability.
So, then you're not looking at the opportunities that could be there for you as someone with a disability as well, whether it be in sport, but also what supports are there for you as a people with disability in terms of education, employment and so on, and signing up to the NDIS as well. So, seeing the Red Dust Heelers in community, us being First Nations and other people with disabilities, men men and women, young and old, people from all different backgrounds and experiences all getting along together and presenting united, but also united in our in our pride of being people with disabilities as well.
And not that we don't have struggles and we make sure we share that too because it's not all like, hey, this is great. Like, it's important to say, yeah, sometimes it sucks. But being able to see us present in that way is quite powerful and has led to some people who haven't previously identified as having a disability, saying, actually, I do have a disability and I think I'm interested in learning more about what that means for me and where I can go with this, the opportunities that can actually arise from that. I hope that made sense.
MS TARRAGO: And, Ms Payne, how does that resonate with you from your experience, learning about Red Dust Heelers through Kathleen reaching out to your dad and what it's meant to you to be a part of the Red Dust Heelers?
MS PAYNE: It made me more confident as a person, especially a First Nations person, especially in Katherine, because I'm the only one that has a prosthetic leg and identifies as having a disability. It's made me more confident as a person, going outside my community and embracing that, yes, I do have a disability and there's no shame in that. And it helps with Indigenous people in remote communities that do have disabilities that it's not shame to have a disability and, if anything, like, you should be proud of it, so
MS TARRAGO: Thank you. And, Ms Payne, can I start with you: how do you use sport to connect with people through the Red Dust Heelers?
MS PAYNE: It's well, with sport, I feel like I'm in my element, that there's no shame in it, that you're going against able bodied people, so people that do have two arms and two legs. But the track is still the same, the ball's still the same, the time is still the same. Like, you're just showing that, I guess, you're better than them, with a disability. But that's my attitude to it, so
MS TARRAGO: So, giving you that confidence.
MS PAYNE: Yeah, so
MS TARRAGO: And, Ms O'Kelly Kennedy, in that elite high level of, you know, representing Australia in the Paralympics, and without naming any organisations, has that space been a safe space to develop your career and in sport?
MS O'KELLY KENNEDY: For me personally, not not as a a teenage girl, definitely not. It wasn't a safe space. I hope that it's a little bit different now because that was I don't want to reveal too much, but that was a little while ago, but I I had some experiences I should have never had in terms of sexual harassment and abuse. I think sometimes with people with people with disability sports, we assume that everyone's well intended, in particular the people with disabilities, but most of those people that behaved badly were men with disabilities.
So, it's important to from my experience, it wasn't a safe place in that stage for me and into my 20s, but I really that's something I'm very passionate about now, making sure what we do with the Heelers works, it's a safe space for women as well, which is why when we had the we did attempt to fund having teams in the wheelchair basketball league, it was important for to us have a women's team as well, because it wasn't a safe pathway, we thought, for women starting out to just finally have the option of playing more basketball on a predominantly male team. So, we are addressing that, but, yeah, it wasn't a safe space for me, unfortunately, but I I definitely plan on changing that.
MS TARRAGO: Now, going back to the composition of the Heelers, who is involved in the Heelers?
MS O'KELLY KENNEDY: Any you guys could all be Heelers if you wanted to be. It's a very simple concept, really. A Red Dust Heelers is someone who's committed to the inclusion of people with disabilities in all areas of life, building healing friendships and a connected community. So, we have a strong focus on First Nations engagement involvement and raising the voices of First Nations people with disabilities but we do everything where everything we do, everyone is welcome, provided they are safe and respectful.
And so truly, if you believe in what I just said, you're a Red Dust Heelers as well. It's a movement. Uncle Darryl Kickett over in WA who's attached to us as well, he's one of us he calls himself our backup Elder. He advises us. He and Uncle Syd want to get shirts that say that on the back when they travel with us. So, he sees us as, it's a movement. We are trying to create that tipping point, get people get people talking, thinking outside of anything they ever thought was possible before and feeling more and more connected. We've got Heelers all over the country, but they know that if they need anything, that we're we're there for each other, and that's really special thing.
Especially over a period of time when we couldn't actually connect that well, we still found ways. So, we had a forum of First Nations women First Nations women with disabilities who have participated in sport to online from all over the country, which Nikaiya participated in, where they were able to share their experiences and get some more get some more research done there and stories. So important to get these stories and still keep people connected during a time when it was hard. It would have been great to bring them together, but, yeah, we found ways.
MS TARRAGO: The Red Dust Heelers are voluntary participants?
MS O'KELLY KENNEDY: Yes.
MS TARRAGO: Ms Payne, you first became involved with the Red Dust Heelers in 2017 when you were in year 12 and that was because Ms O'Kelly Kennedy had reached out to your dad. Had you ever heard of the Red Dust Heelers before that?
MS PAYNE: No, I'd never heard of the Red Dust Heelers. Kath reached out to dad when I was in year 12 because I'd just had a surgery on my prosthetic leg and I was in a wheelchair, and I went through depression because I was limited to walk around and I had to be forced into a wheelchair. I did not want to be forced into it. And then dad was like, oh, just reach out to Kath, and that's when I started to get involved with them to do wheelchair basketball, so another sport that I'm also doing as well, so
MS TARRAGO: And has it been important to have those mentors, whether they be First Nations or not, or people with or without disabilities?
MS PAYNE: Yeah, and lots of them were Paralympians and ex Paralympians and First Nations and non First Nations, so it was pretty diverse, so
MS TARRAGO: Creating that sense of community amongst your
MS PAYNE: Yeah.
MS TARRAGO: Ms Payne, you had some experiences when you were at school that were difficult, and as a result you moved to boarding school. How did you find that, coming from a more remote community going to a major city away from home?
MS PAYNE: I found it really challenging especially that because I'm one of seven or eight. I sit at number one sibling. I was at high school for one term, year 7, and I got bullied out, so and I didn't want to leave but my parents were like, you should go to boarding school. I didn't want to go but I end up going and it's the best thing I ever did, so was go to boarding school down in Adelaide.
MS TARRAGO: And was it important to you, as the eldest of your siblings, to take on those challenges, even though they might be difficult?
MS PAYNE: Yeah, it was. I had the mindset of if my siblings were going to look up to someone it would be me, and I would be their hero. And if they were chasing anyone, it would be me, especially for my achievements. They weren't chasing anyone else. It would be me. So, had that mindset all the way through school and till today.
MS TARRAGO: And now with your studies as well?
MS PAYNE: Yeah.
MS TARRAGO: When you were at school, and you wanted to compete in swimming and you came across some challenges in being able to do that at a more elite level. Can you share with the Commissioners that experience?
MS PAYNE: So because I live in Katherine, so that's like 300 plus kilometres away from Darwin, and Darwin at the time had the facilities and the coaches to train me. And if I were able to, like, compete in competitions or be noticed, I had to drive 300 kilometres or fly to interstate to either win a medal or be put on a pedestal to be noticed. And that was just too much for my family, especially that because I'm one of, you know, seven siblings. My parents can't just drop all their things just for one child. It was way too hard for them.
MS TARRAGO: And is that a particularly difficult thing that you have seen within First Nations communities, particularly remote communities, where families aren't able to access supports to get people like yourself to those competitive events?
MS PAYNE: Yeah. It's just way too hard, like, you can't you've got to travel, and then you've got to find accommodation, then you've guilty to worry about the children or the family you have at home. It's just way too much, so you just end up not doing it at all.
MS TARRAGO: And, Ms O'Kelly Kennedy, you have seen that happening on previous occasions with some of the Heelers that you've tried to support. Could you talk to that particular experience of where you stepped in at the last minute to support that family and the attitudes of without naming anyone, the attitudes that that family and you might have encountered during that experience?
MS O'KELLY KENNEDY: Yes. So, sorry, I'm gathering my thoughts. The the young girl and her mother needed to, as part of the requirements for them to participate in a camp for this sport, they needed to be filling out a COVID check in every day leading into it for two weeks, I think it was, on an app. They struggled with this. The message was from that group that was that if they weren't if they didn't do that, they wouldn't be able to come to the camp.
What was great was that when because they didn't actually fill out that every day, they were under the assumption, therefore, they weren't going. What was great was someone within that organisation did find a way for them to still be able to go, which was fantastic. Unfortunately, that message didn't get to them until the morning of the day they were meant to be flying, which was when they called me quite upset, because they weren't going to be ready in time for that flight.
So, all it came down to was someone a little higher up than the person that had done a very good job to get make things possible for them to still attend this camp needed to just okay Outback Academy covering the difference so that they could go on a later flight, and then I was going to drive them to the airport. So, there was no issue there. Unfortunately, that person higher up vetoed that because they had done enough and it wouldn't be fair on the other athletes if they showed preferential treatment to that degree, I guess. That was the message that came back.
What was terribly sad for this mother and daughter was the mother had done her very best, and she then felt like she let down her daughter. Her daughter had been quite isolated due to COVID. They hadn't been able to participate in many things at all and was finally able to go to a camp and interact with peers with more experiences, including another First Nations athlete with a disability, but unfortunately because that one person decided they had done enough, they ticked the box, they didn't attend that this have I said a name in all this? Good. So, I'm trying so hard. This young girl wasn't able to have that experience, and it was very hard to explain the difference between equality and equity in this situation.
And it was frustrating because if we had more say and, I guess, power as advocates for people like this, we might have been able to push something, but unfortunately at this point we don't, and we it was very sad to say there's nothing more I can do. And, yeah, that was a very that still makes me very sad. It was very unnecessary to block that, considering we were fixing it. There was a solution for her to still be involved.
MS TARRAGO: And in terms of those attitudes and not understanding the equity and equality, from your experience as the co founder of Red Dust Heelers, has it been your experience that First Nations communities have or need that culturally safe space to be able to engage in those programs, and that's something that Red Dust Heelers is dedicated towards, working towards that cultural safety?
MS O'KELLY KENNEDY: Yeah. It I believe there will need there does need to be spaces where I shouldn't be present in them. It should only be First Nations people with disabilities participating. And I know that that's something that we want to work towards as well, where we're developing leaders in that space already. There's one sitting right next to me, who's phenomenal. There's voices everywhere that just need to be heard.
And we do want to provide that space where they can feel completely comfortable and safe in chatting about all the different things that including that extra cultural barrier or that's there that I, as someone a non Indigenous person with disability would never could never understand. So, that's something we're working towards as well. We'd love to do camps where lots of sports to be tried. There isn't a barrier of access or anything like that. We have our backup Elders there, that that's where it's a space where all these discussions that need to be had can be had in a very safe environment led by First Nations people.
MS TARRAGO: Now, Ms Payne, I want to talk about one of those opportunities that you had to go representing the Red Dust Heelers, and that was to Broome. Can you tell me a little bit about what that involved? What sort of things were you doing there as a Heeler?
MS PAYNE: We were visiting the schools that had able bodied kids and some that had disabilities. Getting them in the wheelchairs. I think we did a little bit of blind footy, I think. That was so cool. But it was mainly just getting the kids in the wheelchairs, having letting them have the experience of what it's like for someone that is unable to use their legs. So
MS TARRAGO: And story telling is a big part of the experience as well?
MS PAYNE: Yeah, I told a lot of my story, how I lost my leg when I was four years old to a lawnmower accident just outside on our block in Katherine. So
MS TARRAGO: And for those young people that you might have been speaking to how did you see that impact them, sharing those stories?
MS PAYNE: It made me feel more confident. Especially just remind myself, when I dropped one of my siblings off to preschool one time it would have been my late brother that I lost two years ago, Braxton, his friends like, because they're just little kids so they don't know any different, but they were asking me, like, what happened to my leg and Braxton kind of backed them up and was like, there's nothing wrong with her, she's just like everyone else. That made me more confident to, I guess, walk around without a cover on my leg and just show that I'm just like everyone else. I don't have a disability, despite what everyone else says
MS TARRAGO: And how important is it for, in particular, remote and very remote communities to have access to the Red Dust Heelers?
MS PAYNE: It's extremely important because, like, if I'm the only one in my home town, there's a lot more people that have disabilities that are further remote than Katherine, like, especially the other remote communities that only have, like, 500 people and they have no access to phones, services, hospitals, nothing, and they've got to travel like eight plus hours just to get to Katherine.
MS TARRAGO: And, Ms O'Kelly Kennedy, was there anything else in relation to that Broome trip that you wanted to share with the Commissioners?
MS O'KELLY KENNEDY: Yeah. We'll be going back to so, the way we do things is a co design with the community there. So, we were working with (redacted) oh crap.
MS TARRAGO: It will be beeped out anyway.
MS O'KELLY KENNEDY: Sorry. We were working with (redacted) but for the first time round, it was basically what do you need from us, like, where would we be best to go, who's best for us to talk to, what can it look like that's going to serve the greatest good for the greatest number while we're there. And the first time around, it was really the focus was awareness raising, and that's what we did.
And part of that was actually one of the people working from working with (redacted) as a result of the awareness raising activities and being around us started identifying as someone with a disability and part of the disability community, and he's now exploring more of that and advocating for himself. He's now on the NDIS, so that's an awesome thing because he's based there and us our presence has helped to empower him to continue to work once we leave, which is great.
This next time round though, from what leading on from what Kaiya was saying, I mentioned that we could talk a lot about the different ways in which you can use the NDIS, one of which is getting supports to actually attend different sporting activities that might be going on, where someone pointed out, well, that would be great but we don't have enough support workers to actually encourage that for people.
So, now one of the focuses when we're back will be awareness raising around that being a great job opportunity for people, and talking about that with young people and school leavers and people in the community as that being another avenue for employment as well, and what that looks like. And so yeah, it's changing every time we go back, and it's really it's community led always.
MS TARRAGO: I just want to sit on that and unpack it a little bit. Are the Red Dust Heelers invited or do you just turn up in the community?
MS O'KELLY KENNEDY: We're invited. It's all word of mouth, usually. "We heard about you, is there any way you can come." Unfortunately, sometimes when people say we heard about you, is there any way you can come, we can't without funding. So, it was fortunate that they were able to find the funding for us to attend. But we haven't we've never said no. We've just said leave it with us, we'll find a way, but it can take some time, in that case, to actually get to a place.
We'll get someone to us. So, there was a young man in (redacted) community who acquired his disability at around three, where he's missing parts of his limbs, and he was starting to be a little ostracised by the other young men there, and his support person reached out asking if there's anything we can do. It was a bit hard for to us get to him at that stage. We'd only just started out. But we had an event we were participating in over in WA. So, we told you if we're going to work with you, we need to fly this young man down with his support so he can be a part of it as well, which they did, and that was the first time we met him, and we've stayed connected with him since. You know who I'm talking about.
But sometimes it is about trying to bring someone out to something that's going on. He it was quite funny because it's the first time he'd been around people with disabilities like him, and he really was initially like, why am I with these people, like, what is going on. But as he warmed up, we noticed that, again, like, he used to wear gloves or always had his hands in his pockets, and he started not doing that.
And he started thinking about different sports he could do. And he started doing athletics where his support person, when he went back home used flour, like baking flour to make the lines in the red dust. Didn't last very long, but, like, to replicate the track so he can train. So, I just love that story. But sometimes it does mean that we do need to get someone to us if it's that remote, initially, but ideally we'd love to go everywhere.
MS TARRAGO: And in terms of the Red Dust Heelers and that co design and community led, without naming any organisations, have you seen that set up in other organisations? Is there are there others that do what Red Dust Heelers do?
MS O'KELLY KENNEDY: No, is the short answer. There are some that though that ask for our assistance with that, which and we support those organisations. Often, though, we are the ones doing the majority of work. I think it would be great to see more interest and understanding that there's a little bit of an attitude, "Well, we treat everyone the same so we don't need this" that can come from some organisations.
But also that, "This might be someone else's job, not ours", but, really, the only other group that's doing anything is us and it's voluntary. So, at the moment, it's not terribly sustainable. It's just driven by passion and we're not going to stop but it would be really great for people to come to the party a little bit more.
MS TARRAGO: Now, Ms Payne, what is your vision for an inclusive Australia?
MS PAYNE: That we're all treated the same, like despite having a disability, your colour, race, whatever, all the same.
MS TARRAGO: And what legacy do you want to leave, at least for your siblings?
MS PAYNE: Treat everyone the way you would like to be treated. So if you want to get yelled at, expect to be get yelled at. Just treat everyone kindly. We're all the same. We all have jobs. We all wake up, go to bed, like, it's not hard to be kind.
MS TARRAGO: And your dream one day is to become a judge?
MS PAYNE: Yes.
CHAIR: Hear hear.
MS PAYNE: In the Supreme Court.
MS TARRAGO: And, Ms O'Kelly Kennedy, what do you see as your vision for an inclusive Australia?
MS O'KELLY KENNEDY: I want to see more people feeling like they belong. It sort of comes back to that word a lot with the Red Dust Heelers as well, how powerful it is to feel like you belong, and realising, as we travel around, that so many people don't have that sense of belonging to anything or anyone and even just that little bit of belonging to us makes a huge difference to feel for more people to feel valued for who they are. And, yeah, it's that word, it's belonging, yeah. We all need to belong.
MS TARRAGO: Thank you both.
CHAIR: Yes. Thank you both very much, both for coming here and for work that you've done. And we all wish you well in the continuation of that work, which is very important, and I'm sure Commissioner Mason in particular would endorse that comment.
COMMISSIONER MASON: Absolutely.
CHAIR: And, Ms Payne, your aspirations are spot on. And we wish you every success in your legal studies.
MS PAYNE: Thank you.
CHAIR: And to become a lawyer and in due course to become a judge. The law is some is a discipline that can enhance social justice. Doesn't always work that way, but it can, and it can be a very important force. And I'm pretty sure that when you become a lawyer, you'll be a force for social justice.
COMMISSIONER MASON: Can I ask what university you're going to?
MS PAYNE: Charles Darwin.
COMMISSIONER MASON: Fantastic. Thank you.
CHAIR: Do they use Sackville & Neave on property law? No?
MS PAYNE: I'm doing that next year, property law.
CHAIR: Okay. Thank you again.
MS TARRAGO: Chair, if I could tender the signed statement of Ms Kathleen O'Kelly Kennedy dated 30 November 2022 and ask that it be marked in at 31 009.
CHAIR: Yes, that can be done. That statement will be admitted into evidence and given that marking.
<EXHIBIT 31 009 STATEMENT OF KATHLEEN O'KELLY KENNEDY DATED 30 NOVEMBER 2022
<THE WITNESSES WITHDREW
CHAIR: Thank you very much. Do we now take a short adjournment?
MS TARRAGO: Yes, Chair, a 10 minute break.
CHAIR: Alright. Let's do this. It's just after 11.45. Let's resume at 12 noon.
MS TARRAGO: Thank you.
ADJOURNED 11.46 AM
RESUMED 12.01 PM.
CHAIR: Yes, Ms Fraser.
MS FRASER: Thank you, Chair. Commissioners we will now hear from Ms Sherrie Beaver of the Rainbow Project. I can indicate that Ms Beaver and her interpreters have all been given affirmations this morning.
<SHERRIE BEAVER, CALLED
CHAIR: Thank you. Thank you very much, Ms Beaver, for coming to the Royal Commission today to give evidence. We are very grateful to you for doing that. We are also very grateful for your written statement. Each of us has that written statement and we have read it. So, thank you very much for that. And I will now ask Ms Fraser to ask you some questions. Thank you.
<EXAMINATION BY MS FRASER
MS FRASER: Ms Beaver, your full name is Sherrie Beaver?
MS BEAVER: Yes.
MS FRASER: And you've sworn a statement for this Royal Commission.
MS BEAVER: Yes, that’s correct.
MS FRASER: And that statement was dated 1 December 2022.
MS BEAVER: Yes.
MS FRASER: And do you confirm that that statement is true and correct to the best of your knowledge and belief?
MS BEAVER: That’s correct.
MS FRASER: Ms Beaver, you swore that statement on behalf of Expression Australia; is that correct?
MS BEAVER: That’s right.
MS FRASER: Ms Beaver, can you tell the Royal Commission a little bit about the history of Expression Australia?
MS BEAVER: Yes, I certainly can. Expression Australia was established back in 1884. An organisation established by Deaf people for Deaf people. And since its inception, it's provided 140 years of service to the Deaf and Hard-of-Hearing communities that exist in Victoria. Expression Australia has gone through a number of name changes, and more recently became Expression Australia in 2018. The organisation also merged with the Tasmanian Deaf Society in 2016, which means we now provide services to Deaf people, not only in Victoria, but also Tasmania. We provide a suite of services: Auslan interpreting, Auslan tuition, support work, support coordination, NDIS Services, accommodation services, translation, and community engagement - to name a few.
MS FRASER: And, Ms Beaver, before your recent promotion within Expression Australia, you were the project lead of the Deaf Queer Rainbow Project which is a project, as I understand it, of Expression Australia?
MS BEAVER: Yes, that's right.
MS FRASER: And when did the project start?
MS BEAVER: The project started in 2020 and received a grant in 2019, an Information Linkages and Capacity Building grant, known as ILC. But prior to that, just to give you a bit of history as to how the project started, the Australian Deaf Gay and Lesbian Association, known as ADGLA, has a long history in this country. And at one point folded because unfortunately, they didn't have a lot of volunteers available to support them, and there were unexpended funds that still existed at the time.
And so, they approached VicDeaf, which was formerly Expression Australia, seeking support for the queer Deaf community in Victoria, and wanting to utilise those funds. So they established a research project and employed two research officers, one was Deaf and one could hear. And it was to engage with the Deaf queer community in Victoria and ask questions around what they were seeking, in terms of support, what their needs were and how they could be better supported as a cohort.
The research project went over one year, in 2017. And the findings from that report were produced, and we utilised for the application of the current funds that we received for the Rainbow Project. So the Rainbow Project, as we have just discussed, started in 2020 and has now been extended out to 2024.
MS FRASER: So am I to understand that the project was co designed with people with disability?
MS BEAVER: Yes. So, the project has been co-designed through an advisory group. There's a number of Deaf community members who are involved in the project, and we're wanting to ensure that it was purpose-fit, to be appropriate for their linguistic and cultural needs and also ensuring we had queer Deaf people with lived experience who could contribute and acknowledging the intersectionality that exists not only within our organisation, but also the community.
And this is to increase the organisation's capacity to be able to support queer Deaf people through this project and increasing community understanding about the needs of Deaf queer people and to establish partnerships with various Rainbow organisations to increase their capacity to provide services and support to Deaf queer people in Victoria and Tasmania.
MS FRASER: And you would say that it was essential that the project was co designed?
MS BEAVER: Yes, absolutely, because a project like this can't exist without having Deaf queer community members' involvement. With the advisory group, they provided advice and support to ensure that the project was sustainable and maintained our set goals. We had a tailored requirement of needs, but also ensuring that the organisation could work in and collaborate with the queer community to fully acknowledge their requirements and their understanding. Because they are the subject matter experts, Expression Australia is not.
So, it's critical for us, as an organisation, to maintain our linkages with the Deaf queer community through our strategic goals and to extend our engagement and broaden our impact.
MS FRASER: And on the topic of impact, what are the specific aims of the Deaf Queer Rainbow Project?
MS BEAVER: First of all, to develop partnerships with Rainbow organisations, like-minded organisations in Victoria and Tasmania. Also to increase your understanding and awareness to work with Deaf and hard-of-hearing queer people. Because, historically, we have identified this gap where we've had Deaf queer people who don't necessarily intersect with the mainstream organisations or the mainstream queer community. So, it's important that we have that overlap. Developing resources using Auslan as a first approach, and what I mean by that is a lot of information is text based. It's based in English.
So translating that information into Auslan, Deaf people's primary language, and getting Deaf queer people to produce that language in Auslan, in translations from an English script, and as a result, it means that we're meeting the linguistic needs of Deaf queer community members. And the wider community has a knowledge and an understanding of Deaf queer people's needs. It's also an opportunity for social engagement and also to enhance Deaf queer individual's mental health and wellbeing through events that are organised where they can socialise and talk amongst their peers, experience queer performances, meet friends, young and old, but to also have conversations with different experts from various organisations to assist them with understanding their own identity and understanding that intersectionality is a critical part of who you are and being part of a community. Identifying Deaf queer people with leadership skills and capacity was another aspect we looked at.
So, if they're able to produce information in Auslan and then passing that on to other future generations of Deaf people who use Auslan.
MS FRASER: Ms Beaver, I'd like to unpack some of the information that you've just shared with us. Am I correct to understand that the specific activities that the Rainbow Project undertake is, or could be broken down into several categories: access to information, Deaf and Rainbow awareness training, and inclusive recreation, and peer support and modelling? And one of the ways in which you undertake the inclusive recreation is your collaboration with the Midsumma Festival?
MS BEAVER: Yes, that’s right.
MS FRASER: Now, if we come back to Auslan and access to information, can you tell me what are the risks to a Deaf person, queer or otherwise, if they're not able to access information in Auslan?
MS BEAVER: Yes, I can give you a number of examples. A lot of information is disseminated in relation to PrEP, which is a known medication for people from the queer community, more specifically gay men, to access. So this medication is provided to decrease a person's chances of contracting HIV. When the medication is taken, experts know that there's a specific timeframe, that this medication needs to be taken over six weeks or even more, to enable the body to develop antibodies and a stronger immune system to reduce the chances of that individual contracting HIV. There's a lot of information provided about PrEP in English in the text form, and it's not accessible to Deaf queer people. So Deaf gay men do not have that understanding or awareness, and therefore it means that their chances of contracting HIV are increased as a result. So, we produced 11 Auslan videos that talk about HIV and AIDS, and what that means, the potential risks, how to prevent catching HIV and AIDS, and specific videos about PrEP, the medication, in Auslan, and what the process includes: where do you obtain this medication, how long do you need to take it for, who do you seek out this medication from?
So these videos were developed in partnership with a larger organisation in Victoria who focus on community health services for the queer community as a whole, and provide support services to gay men with HIV and AIDS. So, that written material was provided to us, and we needed to ensure that it was accurate to be translated into Auslan to produce various videos. That has a huge impact because from our experience, many Deaf people were unaware about the content of that information until we released it in Auslan. And as a result, it means we've reduced the risk of Deaf people who are queer to contract HIV or AIDS.
So it means that we're able to support the Deaf queer community through their health, physically, but also their mental health to ensure that they do feel empowered and they're able to sustain a happy life and know what they need to do to reduce their risk.
MS FRASER: So, without that access to information in a language that they can understand, Deaf queer people don't feel empowered with respect to their health, for example?
MS BEAVER: That's right. They're unaware. They don't know that their risks have increased. Putting it plainly, we live in an auditory environment in this world. So, Deaf people don't have the opportunity to overhear conversations incidentally. If a Deaf gay man happens to be travelling on a bus, there may be a group of queer people on that bus, talking about PrEP and how they utilise that medication. And this Deaf man doesn't have access incidentally to that information. He can't hear it. He's oblivious to the conversations occurring around him - therefore his risks increase. And potentially, he could increase the risk to other people in society because of this lack of awareness. So that's why it's important that Deaf queer individuals are able to be involved in conversations like this, to minimise risk to the broader community.
If you think about the COVID information provided in Auslan with the various premiers around the country, Deaf people would not have been aware about COVID and the risks had they not had access to Auslan interpreting. So by providing Auslan interpretation every day, on the daily updates around COVID and the statistics, it meant that Deaf people have realised they need to work with the community to minimise the spread of the virus, and that reduces everybody else's risk as well. So I guess I wanted to emphasise the importance of working together, disseminating information for everyone to understand, to be able to cooperate, and receiving that in your primary language, being Auslan, to minimise the risk, not only to Deaf people but also to their own communities that they live in.
MS FRASER: If we focus on the queer community specifically, is it the case that there was a gap, to some extent, in Auslan in relation to appropriate words and languages, or words and language, sorry, for the deaf community?
MS BEAVER: Yes, you could say that. Similar to what I was saying before, the Deaf community, but society at large. If you think about new terms, Deaf people are not privy to those incidental conversations to overhear new terms that are coined and they're not on par with their hearing peers.
So it means Deaf people are behind the eight ball in terms of understanding new terms, concepts, lexicon that's used within the queer community, such as non-binary, pansexual, and intersex, because in Auslan, we don't have signed equivalents to those English words. And that's why it's critical that organisations, such as Expression Australia, are able to unpack the meaning of these words to produce them in Auslan to Deaf queer members so they understand the concepts. And what's significant also is Deaf queer people having access to the language used within their own queer communities, for them to be able to explore their own identities, understand themselves, be empowered, and live fully-fledged lives and be confident about who they are and their own identity. If they're not able to have access to the language to describe these feelings, it makes it more difficult - they face additional barriers.
For example, I'll talk a little bit about my own personal experience. As a young teenager, I was struggling at one point in my life around my identity. I didn't know how to explain what I was feeling in Auslan, because there were no equivalent concepts in Auslan. This language simply wasn't available in my own language. I sought out Deaf queer role models - there weren't many around. There were certainly older Deaf people but the age gap between myself, being a 16-year-old, and them, of course, I didn't want to naturally associate with them. Had I had someone closer to my own age, I could have had those conversations that could have assisted me.
So my own growth and development was important in having an older person to look up to, who I could role-model and understand the terms that were necessary. And had I had that support, I could have coped much better than what I did. Looking at new terms that do come about in the queer community, Auslan signs aren't created straight away. So, if we think about the sign 'transgender', this was created by a Deaf transgender person, because they had that lived experience. Signs can't be created by a Deaf person who doesn't have the lived experience. And at the moment, there's no Auslan sign for 'intersex', because we simply are not aware of a Deaf person who has a lived experience of being intersex. And that's why we have to actually spell that out letter for letter.
MS FRASER: You've told us a moment ago about the 11 videos that you've created in conjunction with the health organisation in Victoria. Do those 11 video resources sit only within Expression Australia or are they disseminated and shared amongst other health organisations around Victoria and otherwise?
MS BEAVER: Well, at the moment, they're available on YouTube through Expression Australia. And we are working with a queer health organisation to upload that information on their website. It's still a work in progress, but we're certainly keen to see a complete rollout across the country into the generic queer community but also for Deaf queer community members to understand because the 11 videos would certainly benefit so many.
MS FRASER: Coming back to some of the recreational activities that the Rainbow Project has been involved with, how important do you think inclusive recreation is for the Deaf queer person in developing their sense of identity and inclusion in society?
MS BEAVER: Inclusive recreation is critical, and for this reason, Expression Australia have recently started collaborating with the Midsumma organisers in order to create a completely inclusive festival experience for Deaf and hard-of-hearing people for the first time.
MS FRASER: Can I stop you there. Can I ask you to explain to the Commission what the Midsumma Festival is?
MS BEAVER: Yes, of course. The Midsumma Festival is a month-long festival, celebrating queer community members in Victoria - similar to Mardi Gras in Sydney - however, the Midsumma Festival is kind of on a smaller scale. It's much more community-focused. There's a number of events, performances that are provided, and it's been embedded in Melbourne culture for some time. So over the years, Midsumma has provided Auslan interpreting for specific events throughout the month, but the entire event hasn't been completely inclusive for Deaf or hard-of-hearing people.
So, in 2023, for the very first time, we will have a Deaf community hub at the Midsumma Festival, which creates a safe space for Deaf community members who are queer and who can participate in the daily events and engage with other individuals who may be interested in learning Auslan, and also, it's mutually beneficial for those who wish to learn Auslan and want to learn some queer signs. It means that with Expression Australia's support, these individuals are able to interact. They'll provide Auslan interpreting for the Deaf queer community members who wish to go and engage with a business stallholder. And the interpreter can assist them in that process to fully engage in those types of conversations.
So it means that these Deaf and hard-of-hearing individuals will, in fact, have the complete Midsumma experience, not only at the festival, but also the Pride March as well. So, it's a very exciting time for the Deaf and hard-of-hearing queer community to have complete access through the Midsumma and Pride experiences in 2023. And we'd like to see more Deaf and hard-of-hearing people feel a strong sense of pride and identity, to feel empowered and confident to be able to be their authentic selves.
MS FRASER: Will the Deaf hub that you've just spoken of be open or available to experience by people who are not Deaf or hard-of-hearing as well?
MS BEAVER: Yes, it will be. At the Midsumma Festival, the Deaf community hub visually will be a large marquee, and we welcome all people who can hear, who don't necessarily use Auslan, who wish to learn about our community and culture, to learn basic Auslan signs or even just to know that there are Deaf queer people that they can interact with. Because we certainly support and love our allies - we require more allies. And if we're wanting to see the world be more inclusive, we need allies to support us, to interact in the wider community, and specifically the queer community.
MS FRASER: The Midsumma Festival and its collaboration with the Rainbow Project sounds like a great example of recreational co design. What do you think other festivals or similar events could learn from this collaboration?
MS BEAVER: Well, all festivals could learn from this collaboration actually. To date, so many festivals have not been wholly accessible for the Deaf and hard-of-hearing community. We're not able to have that complete festival experience, if you like. Back in my day, when I think about the Big Day Out, for example, it was never completely Auslan-interpreted.
Music festivals didn't provide signing on stage. It's only a recent occurrence. I recall going to my first accessible festival, which we all know as Ability Fest, organised by Dylan Alcott, who gave evidence yesterday. He had a vision of accessibility, and the example of inclusion is just incredible: seeing Auslan interpreters signing performances at a music festival. It's amazing to be able to take part in a festival such as that but many other festivals, I'd really love to see make more of an effort in creating a space where Deaf people can participate. And in my own experience, festival organisers generally consider accessibility requirements as an afterthought - it's not front of mind. And it means that Deaf people suffer from advocacy fatigue. They're constantly trying to negotiate their accessibility requirements. And we're often told there's no money in the budget for it.
And then Deaf people need to pool their resources through the community by using their NDIS funds to contribute to that in order to make the festival inclusive. I'd really love to see more festivals embrace the concept of inclusivity and ensuring that there is access for Deaf and hard-of-hearing people, so they can fully participate from start to finish.
MS FRASER: Ms Beaver, I would like in a moment to come back to some of the other social and recreational activities that the Rainbow Project is involved in. But before we move to that, can we step back a little bit in terms of some of the other work that the Rainbow Project does as probably more aligned with the work in terms of Auslan. Could you tell me about the work of the Deaf Queer Rainbow Project in terms of Deaf and queer awareness training?
MS BEAVER: Yes, I can. Expression Australia's provided Rainbow awareness training to all our internal staff for the first time this year. That training included information about the queer community, such as pronouns and how we acknowledge these in Auslan. Throughout the training, I witnessed the participants engaging with and understanding these topics, which in turn increase their capacity for being better able to support their Deaf clients who identify as members of the queer community. Another benefit from this training was that staff, who identify as LGBTIQ+ themselves, now feel more seen and have confidence in their workplace supporting them. Expression Australia now has a huge focus on intersectionality, a concept that is relatively new to the Deaf sector.
Expression has embedded the concept of intersectionality within their work practices and acknowledge that the Deaf community they serve come from diverse backgrounds and identify in a myriad of ways, such as being queer, having other disabilities, being First Nations, having lived experience as a migrant or being from a CALD background. Our organisation acknowledges this, looking at the diversity and is fiercely passionate about recognising intersections of identity in our work.
So, in relation to my previous comments about queer awareness training within the organisation, Expression Australia is currently going through a process in obtaining their Rainbow Tick Accreditation. And I can proudly say that we're on track to qualify for that accreditation by mid-2023. The training is part of this process. This is an exciting prospect for us, and I believe that we'll be the first Deaf organisation in Australia to achieve the Rainbow Tick status.
MS FRASER: So, just so that I understand, you've done the Rainbow awareness training within Expression Australia, but looking at it from the other side, you have done Deaf Awareness Training into queer and Rainbow organisations?
MS BEAVER: Yes, that's right. And thank you for that question. Expression Australia historically has provided Deaf Awareness Training that many of us know as DAT. And through the Rainbow Project, the Deaf Awareness Training has been modified or tailored, if you like, to work with queer organisations in order to provide them with an awareness through two lenses, understanding the Deaf perspective through two lenses. So not only the Deaf perspective but also the queer perspective.
And also sharing the experiences of those who are queer but through the lens of a Deaf person. As part of that, we talk about the history, the barriers that Deaf people have traditionally faced within the queer community. So it's a great segue for us to be able to partner with these organisations in these examples where we provide Deaf Awareness Training and ensuring that our Deaf Awareness Training is more diverse and inclusive. And that we're better able to tailor our programs to suit organisations' requirements. For example, working with a queer organisation, we might be providing Deaf Awareness Training to a hospital or to mental health professionals. So, this way it means that our programs recognise their diversity and intersectionalities.
We do provide Deaf Awareness Training to... sorry, not Deaf queer organisations, but just to clarify, general queer organisations. And we did that as a pilot originally that provided feedback to assist us in making the necessary changes to ensure that our Deaf Awareness Training was appropriate and fit for purpose and ensuring that we have positive impacts for those organisations and also ourselves and to continue that ongoing partnership.
MS FRASER: And did you mention a moment ago that the organisers of the Midsumma Festival have undertaken Deaf Awareness Training themselves?
MS BEAVER: Yes, that’s correct.
MS FRASER: So that is something that you would like to see other event organisers and people like that who are organising inclusive events to also undertake?
MS BEAVER: Yes.
MS FRASER: Did you see a notable difference in the approach taken by the Midsumma Festival organisers before and after they undertook that training?
MS BEAVER: I saw a notable difference in their approach, how they became much more collaborative. And the fact that they were willing to engage more regularly if they had any questions, thoughts or ideas around inclusive requirements for Deaf people. They're all so much more willing to work with us and think about how they could better improve the Midsumma program as a result to be more accessible for Deaf and hard-of-hearing queer people.
MS FRASER: And what did the Deaf Awareness Training that the Midsumma Festival, for example, undertook, what did that actually look like? How many sessions were involved? How long did it take?
MS BEAVER: Well, I must say we've only provided one session so far. It was a cohort of about 20 people. And the Deaf Awareness Training was about an hour-and-a-half, and it was in an interactive format where people were able to ask questions and interact.
MS FRASER: And is that something that within the Rainbow Project you see continuing to develop or building upon?
MS BEAVER: Yes. Definitely building upon that because our main aim is to ensure that it's a permanent offering. So, it means with Deaf Awareness Training sessions, we'll be able to make them fee-for-service, and the funds raised from this service can go back into the Deaf queer community.
MS FRASER: And I would imagine that that Deaf Awareness Training is delivered by people who are Deaf or hard-of-hearing?
MS BEAVER: Yes, that's right. The presenters always need to be Deaf or hard-of-hearing and Auslan-proficient of course. The Deaf Awareness Training provided to queer organisations naturally require a Deaf queer person to provide that service. And that way, we're ensuring a culturally-appropriate fit.
MS FRASER: So, that the information that's shared is correct and authentic, to use another word?
MS BEAVER: Yes, that's right.
MS FRASER: Coming back to some of the social and recreational activities that the Rainbow Project is involved with, before we move to the specifics of those activities, can I ask you how important do you think it is that there are social and recreational activities, aside from things like festivals, available to Deaf queer people?
MS BEAVER: Well, it is important for a number of reasons. First of all, to create an ongoing connection, to contribute to their emotional and social well-being, and also to be with like-minded people who share similar commonalities, being able to have dialogues where they're able to share their general knowledge and inform one another - that's really important.
So if a Deaf queer person seeks out and discovers new information, they can share that with their community members on various topics. It's really just about being able to engage in these types of conversations, but also for social interactions. And this also segues into the use and evolution of Auslan as a language, creating new concepts that tie into terminology used in the queer community, having the space and the opportunity to create together, in a co-design environment, new concepts and signs in Auslan through shared experiences. That's really important for them.
MS FRASER: And do you see that it provides an important opportunity for that peer support?
MS BEAVER: Yes, absolutely. Peer support is critically important for the Deaf queer community and the general community as a whole, because we all need to support one another. Nobody works in isolation. We share similar experiences, similar understandings, a commonality through language and culture - that's what binds us together as people
MS FRASER: And what are some of the examples? So, we've touched on or we've discussed the Midsumma Festival. What are some of the other examples of social events or recreational activities that the Rainbow Project has been involved in?
MS BEAVER: Just recently in September, Expression Australia organised an event known as the 'Rainbow Get-together'. And this event was specifically for the Deaf queer community to be able to get together and mingle in a social environment. So having access to a safe space where Deaf queer members can engage in different types of conversations and also share experiences, enjoy one another's company, catch up with old friends, create new friends.
And with this event and my own personal observations, it was wonderful to see the queer community get together in one space, because this doesn't happen often for Deaf people. But also the various stalls that were operating from different Deaf queer organisations and people knowing where they can reach out and be provided with different types of supports and being able to interact in those types of conversations, having support provided two-way. But I just wanted to reiterate: It's important that we do have safe spaces for the Deaf queer community.
MS FRASER: I'd like to ask you some questions about disability pride or disability solidarity, but before we get to that, am I correct to understand that the event that you just discussed in September was attended by Deaf queer people by choice?
MS BEAVER: Yes.
MS FRASER: And what would you say to any suggestion that an event like that, that is targeted at or really designed for Deaf people alone, is an example of segregation?
MS BEAVER: No, I wouldn't call it segregation. It's about creating a safe space, and it's imperative that there are safe spaces for Deaf queer people to feel safe, first and foremost, to be comfortable, to feel authentic, and also to be able to engage with like-minded people.
To give you some historical context, Deaf people in this country often have not had access to their own safe spaces. In the small moments that they have had these opportunities, we do know, for instance, in Deaf schools, they were considered a safe space, because 95% of Deaf people are born to hearing parents, which means within the home the Deaf person or Deaf child often feels isolated. They don't always have the opportunity to feel comfortable and be their authentic self.
However, when the Deaf child attends school, they feel a sense of relief. They're able to have their Deaf fix. They can communicate in Auslan freely, fully be themselves, be comfortable with who they are, feel safe, and interact and mingle with other Deaf people who use Auslan as their primary language, and most importantly, feel at home. Because when a Deaf person enters a Deaf space, they immediately feel comfortable and at ease because the Deaf community is like family for many Deaf people. As a Deaf queer person myself, when I attend a Deaf queer space, I feel at home. I know that they're like my family. I don't need to think twice about what I need to say.
MS FRASER: Can I ask you in your personal opinion how this concept of safe spaces for people with disability sits alongside the concept or vision for an inclusive society as a whole?
MS BEAVER: That's a really interesting question. My personal opinion on that is that, firstly, it's important to move away from the medical model. And I'm not being entirely critical of it - it is successful in some instances - but we need to look at the social model of disability in order to provide people with disability an opportunity for social engagement, create safe spaces. And like I said before, Deaf people want to have spaces where they can completely be their authentic self and engage in their primary language, Auslan. Because, unfortunately, Deaf people live in a world that wasn't created for them. Growing up as Deaf children, we've had to constantly adapt our communication to hearing people who hear and speak, but the hearing and speaking world didn't adapt for us.
We were forced to attend speech therapy, attempt to use the little hearing that we had to fit in to this hearing-speaking world. So, most of our lives were spent doing this rather than focusing on our education. And if we had the opportunity to attend Deaf spaces, we can feel a burden lifted off our shoulders and feel more comfortable to be ourselves and feel safe and not feel obligated to communicate in a different way, that's not natural for us, in a way that suits hearing people and be more comfortable about talking about these issues with our peers who are Deaf and how we deal with these scenarios when they arise.
Again, it's another example of being able to be empowered, supporting each other, and I could go on and on about that but I don't think – I'll keep that response brief.
MS FRASER: And do you see that the creation of those safe spaces actually builds on disability pride or disability leadership to put people with disabilities in a better position to then create inclusive or work with other non-disabled people to create inclusive spaces in the broader community?
MS BEAVER: Yes. Because if we're able to create these spaces, naturally they need to be Deaf or disability-led. People without lived experience can't possibly walk in our shoes. They don't know what it's like to be Deaf or to have a disability. So, it is really important to be given the opportunity whether you're Deaf or disabled to create your own space. And also, I often think about leadership opportunities at all levels of leadership within organisations, the opportunity to partake in that.
It'd be wonderful to see more Deaf leaders and disabled leaders be involved in these organisations, because they have these unique lived experiences and are able to work with the diverse community to ensure that all our spaces are much more inclusive because they know what it's like to face barriers and to go through this experience in terms of understanding what their requirements are and having spaces that adapt to their cultural and linguistical needs.
MS FRASER: And those spaces then lead to leadership, which then has a broader impact on the creation of that inclusive society. Is that what you would say?
MS BEAVER: Yes.
MS FRASER: Ms Beaver, are you able to share with the Commission some of the aspirations of Expression Australia for the future?
MS BEAVER: Yes, I can. One main aspiration for Expression Australia is to formally establish a Deaf centre in Victoria. And at the moment, we're exploring various options to create a Deaf centre, and we've been working on that for a few years now, and that work will be ongoing.
So the intention is that the Deaf centre is a space that's provided - almost like a one-stop shop, if you like. And it would mean that like-minded organisations could co-exist within the one location. And it would mean that the Deaf community could have access to these services and supports when required, whether it was parents of Deaf children who could attend the organisation, sign language interpreters attending professional development workshops, collaboration sessions, individuals who'd like to learn Auslan, and having the benefit of learning Auslan whilst being fully immersed in a Deaf space with Deaf community members. And then they become terrific allies for Deaf people as a result. Ideally with the Deaf centre, it would include Deaf spaces and follow the Deaf design principles. This concept was established in the United States by a Deaf person some time ago, who works at Gallaudet University. The concept of DeafSpace or Deaf design looks at architecture within a space that's appropriate for Deaf people. So, if you think about a corridor, a narrow corridor isn't conducive to two signing people, walking side by side. Considering features such as natural lighting, lighting that can be dimmed or is made appropriate. You may have lifts that are made with Perspex or glass where Deaf people can sign to one another on different floors and the ability to be able to communicate across rooms.
So, like I mentioned before, Deaf people being able to sign across larger distances, because as we know, signers can communicate across rooms. And ensuring that when we have meeting spaces that desks are arranged in a horseshoe-type manner or in a circular fashion so all Deaf people can see one another whilst communicating. So, there's some examples of Deaf architecture, and it ensures that there's total accessibility for Deaf people and other Auslan users.
MS FRASER: How do you believe that the concept of a Deaf centre or a Deaf hub sits alongside a vision for an inclusive Australia? Isn't it that what you've just talked about should be what is aspired to in all areas?
MS BEAVER: Yes, that'd be absolutely amazing to see the principles of DeafSpace be incorporated into architectural codes across this country. One example I can think of, of a purpose-built space, is the Victorian Pride Centre in St Kilda. So, that's a space that was purpose-built for the queer community where queer community organisations are co-located. And for the first time, people have had access to this type of service, because it was created specifically for the queer community in St Kilda.
So, if more organisations are able to create spaces - like this - where their members are able to congregate, the result is that the mainstream community have a better understanding about the minority group. Particularly with the Pride Centre, they do have cultural heritage aspects intertwined with information that is shared about the struggles and oppression that the queer community has faced historically, and parallels can be drawn with the Deaf community around the oppression and the experience that they have faced historically - they have such a rich history. So, there is potential there for people to be better educated and informed about these minority groups and what they've experienced in the past.
That's why it's important that we do have a Deaf centre, to be able to demonstrate Deaf Gain. As an example, if you see a monitor on, that's captioned 24/7, it means that everybody, universally, can gain from this, and historically, this technology was created for Deaf people. And now, as a person who can hear, you don't need to hear the dialogue in the film on Netflix, you can simply watch it with captions. So, there's universal or Deaf Gain as a result. And in the Pride Centre, we can see that there would be Queer Gain for the mainstream also. Even thinking about a child who is exploring their sexuality, they could attend a venue such as this with their parents to be better informed to make key decisions.
MS FRASER: Ms Beaver, just one final question for today: could you share with the Commissioners your vision for an inclusive Australia?
MS BEAVER: Well, my vision for an inclusive Australia would mean that all Australians completely embrace Deaf and hard-of-hearing community members and Auslan, understanding that Auslan requires a legal protection and should be incorporated into the Disability Discrimination Act and recognised as an official language of Deaf people in Australia. And therefore, this means that all these individuals have better access to Auslan and Auslan interpreting.
And the CRPD actually talks about Deaf people's right to access language in their own sign language. So, the DDA can work in that respect in ensuring that all information is provided in Auslan. And as a result, we can see improvement in the quality of life for Deaf people to make informed decisions independently. And I'd love to see that happen in Australia and see further recognition of Auslan as our language, and also see Auslan-interpreting provided with all government announcements, not just emergency announcements. In addition to this, I believe that there needs to be better access and education to the medical sphere and government services, so that Deaf people are able to receive the supports they require in their everyday lives without the need to individually advocate.
COMMISSIONER McEWIN: Sherrie, Counsel, I would just like to clarify a point that was mentioned earlier, if I could. Before, a question was asked to you about the concept of Deaf space, and whether or not that represents possibly the model of segregation. I want to clarify your response there. When we talk about when you talk about Deaf space, that is accessible to the broader community as well. And that it's not only about a space for the Deaf and Hard-of-Hearing community. So, I wanted to ask, is that space accessible for people of the broader community, so people that can hear?
MS BEAVER: Correct. This isn't about creating a segregated space which I see as spaces created by people without a lived experience. The Deaf hub will simply be a space created for people by those with a lived experience of Deafness.
COMMISSIONER McEWIN: Thank you.
MS FRASER: Commissioners, that is the evidence of Ms Beaver. If I could ask that Ms Beaver's statement be tendered into evidence and be marked 31 010.
CHAIR: Yes, the statement may be admitted into evidence and will be given that marking.
<EXHIBIT 31 010 STATEMENT OF SHERRIE BEAVER DATED 1 DECEMBER 2022
MS FRASER: Thank you, Chair. And I understand we will now break until 2.10 pm Queensland time.
CHAIR: We're finishing a little early. I'll just check with Ms Eastman as to whether we should start at 2 or 2.10? She's our official time keeper.
MS EASTMAN: I think we can be ready to resume at 2 pm.
CHAIR: Very good. Thank you very much, Ms Beaver, for your evidence and for the statement to the Royal Commission. We do appreciate your assistance and the insights you have given to us, and the work that you and your colleagues have performed. So, thank you very much indeed.
MS BEAVER: Thank you very much.
CHAIR: Thank you. We'll adjourn until 2.
<THE WITNESS WITHDREW
ADJOURNED 12.59 PM
RESUMED 2.03 PM
CHAIR: Yes, Ms Eastman.
MS EASTMAN: Thank you, Chair. Thank you, Commissioners. Our next two witnesses are joining us online, and I'm very pleased to welcome Angel Dixon OAM and Associate Professor Paul Harpur. In our discussions, I think when we have the conversation and I ask the questions of them, I'll refer to Angel and Paul by their Christian name. But they should be coming onto the screen in a moment. Chair, they've made their oaths and affirmations before coming on. So, I can see Ms Dixon.
CHAIR: I'll
MS EASTMAN: We're just waiting for Associate Professor Harpur.
CHAIR: Right.
MS EASTMAN: Here he's coming.
CHAIR: That doesn't look like Professor Harpur on our screen.
MS EASTMAN: I can see that he's coming. Alright. So, Paul, if you can hear me, it's Kate Eastman speaking. Could you turn your camera on, please.
CHAIR: Ms Dixon, your camera is definitely on. We're just waiting for Professor Harpur to I'm not sure whether he has to turn his camera on or something else has made here he is.
ASSOC PROF HARPUR: Am I here now?
MS EASTMAN: Yes.
ASSOC PROF HARPUR: I'm not sure. There was an extra process of clicking for some reason in the transfer. So, you can hear me and see me.
MS EASTMAN: We can. Thank you, Paul, for bearing with us.
ASSOC PROF HARPUR: Thank you.
MS EASTMAN: I'll just ask the Chair now to say hello to both of you.
<ANGEL DIXON, CALLED
<PAUL HARPUR, CALLED
CHAIR: Yes. Hello to both of you. Welcome to the Royal Commission and thank you very much for coming remotely in order to give evidence. We very much appreciate your assistance to the Royal Commission, and we fervently hope that the information technology works perfectly. If you would be good enough to follow Ms Eastman, she will now ask you some questions. So, thank you very much.
ASSOC PROF HARPUR: Thank you.
<EXAMINATION BY MS EASTMAN AM SC
MS EASTMAN: Thank you, Chair and Commissioners. Just before I start with some questions, to give a context to the topics that we'll talk about this afternoon, which really will focus on changing attitudes and human rights, the Commissioners and those following the proceeding may be aware that Australia has the Australia's Disability Strategy 2021 to 2031, and under the Strategy, the government have committed to taking a range of actions and there is the vehicles of what are called Targeted Action Plans. The Targeted Action Plan, sometimes called TAPs, is designed to make headway in achieving the outcome in specific areas identified in the Australia's Disability Strategy.
Now, one of the TAPs is called the Community Attitudes TAP. And that seeks to set out key actions to improve community attitudes towards people with disability to influence behaviour. And this will be a topic that I will deal with in more detail in the next few days when we have the opportunity to speak to representatives from the governments.
But the Community Attitudes TAP set some particular actions for 2021/2022 and then also for the next bracket, 2023 to 2024. The Royal Commission has heard over the course of its Public hearings from its research in private sessions and in its submissions that ableist attitudes and behaviours of people without disability contribute to the exclusion of people with disability which, in turn, may result in a heightened risk of violence, abuse, neglect and/or exploitation. Attitudes can run deep, and this session is an opportunity for us to have a very frank discussion about ableism, attitudes and behaviours, but, most importantly, how we might approach changing attitudes.
So, normally I would introduce our two witnesses, but I've asked them whether they would like to introduce themselves and tell you about themselves, the work that they do and anything they think might be relevant to the discussion that we're about to have. And then, Commissioners, we'll continue on by focusing on a few particular topics. So, Angel, can I start with you, please. What would you like to tell the Royal Commission about yourself?
MS DIXON: Thanks, Kate, and thank you, everyone, for having me today. I will just give myself a bit of a visual description. I am a young woman wearing glasses. I have long dark hair, and I'm wearing a very blue summery dress. I am quite nervous and I feel the weight of my community and this Commission on me today, so I will be reading mostly from my notes throughout this this session. And I do have a little bit of a written bio here about my personal life. I know that you have access to my CV, which is very factual. It talks about my work as a former CEO of the Attitude Foundation, the my work at starting with Julius and also as a researcher through Griffith University at the moment.
But they share little about my drive for ensuring that people with disability can enjoy and understand their human rights as worthy and equal human beings. I grew up in a family that was irreparably broken by limiting and harmful attitudes towards disability. My brother is a person with a disability with a life and story that isn't mine to share, but the attitude that some people's impairments or disability are beyond the realms of human rights, drove a very deep seated belief in segregation and feelings of shame in my family.
It was only when I acquired my own impairment when I realised how wrong it all was, and the challenging thing for me then was that not only was I an outsider in a society that no longer welcomed or understood me, but I was also an outsider in my own family. Human rights and attitudes are unequivocally tied, and the data and attitudes towards disability in Australia to me isn't surprising, but it's still pretty horrible.
I hope that this conversation can add to and fortify the evidence that the Commission has already heard and that the outcomes of this Commission are those of utmost importance to my community and will encourage action.
MS EASTMAN: Thank you, Angel. Paul, can I turn to you. You have provided the Royal Commission with a very large and extensive CV, and you have a large number of publications. What would you like to tell the Royal Commission about yourself and your work.
ASSOC PROF HARPUR: Well, similar to Angel, I would like to paint why I care about creating an equal society. When I was born and to the age of 14, society was designed for me. I was your average white Anglo Saxon male, boy, no disability. Then on 12 October 1993, I was hit by a train. When I woke up in hospital and got out, I rapidly realised society was no longer designed for me. People's views of me had shifted from Paul Harpur the basketballer who was, hey, a good guy, larrikin, to Paul the blind boy.
And, quite frankly, it really drove in me this desire to shift it not only for me but everybody in society, and that belief that we can shift society to make it more inclusive has really enthused me throughout my career, going to law school, through to a PhD, working as a practitioner in law, associate professor at the moment, and also through my sporting career where I was I'm a dual Paralympian, dual Commonwealth Games athlete, and through that I was able to shift a lot of attitudes about what can and can't be done by people with disabilities.
And so throughout all of my walks of life, I now come to you today excited by the opportunity to hopefully help the Disability Royal Commission shift the dialogue on inclusion in society.
MS EASTMAN: Well, thank you both very much and I want to start with language as the first topic. Often, when we think about the language used to describe people with disability or the circumstances in which people with disability live, the language can sound very confronting, and it can be language that intentionally excludes or separates people with disability. So, we hear language that describes people in wheelchairs as being confined to wheelchairs.
And a lot of that language actually stems from looking at the person's impairment and using the impairment to give identity. So, we sometimes describe this language as ableist, but I want to start, Angel, by asking you about why language is important when it comes to changing attitudes about and towards disability. So, could I invite you and if you've got notes, please read them. But if you just want to speak freely, also feel free to do whatever you would like to do to answer the question. So, over to you Angel.
MS DIXON: Thank you. As I said, I really don't want to miss anything, and I could speak on these topics for hours, so I've done my best to condense my notes. So, I'm going to focus on my notes. So, all forms of language and the words we use to describe ourselves and others impacts every area of life as I'm sure we all know. The presence of ableism and disableism is so ingrained in our daily lives and language that a lot of the time we're not even aware that it's happening. It's discrimination in plain sight, and it certainly isn't limited to our language, but language perpetuates it.
I have quite a sensitive lens for all of this, call it an occupation at hazard, and I'm aware that even the word "ableism" is somewhat problematic. The word "ableism" was coined in a different time. The etymology of the word is patterned with sexism, racism and the like, and the foundation of the word is able bodied. As a community, we've actually moved towards disability status as our demographic identifier to steer away from ability and other euphemisms with unintentional ableist connections. It's pretty rough when we're at the mercy of even the words that we use to describe our own discrimination.
Instead, I call it what it is, discrimination in favour of people without disability. And shifting perspectives through framing, like we do at Attitude Foundation, learning about and understanding the words we use and the language that we use, and using it as a change mechanism in and of itself, I think, is really underrated.
MS EASTMAN: So, Paul, what do you see as the importance of language? As lawyers, language can be very important to the work that we do. We define terms. We rely on the meaning of words to fashion how people should behave, to determine what is inappropriate. How do you see language as being important when it comes to the attitudes towards people with disability?
ASSOC PROF HARPUR: Language is profoundly impactful. If you think about it, we're all lawyers well, the bench is all lawyers. If you think about a personal injury claim, on one side, you've got the plaintiff, and they will talk about suffering and the heartache caused by this disability. On the other hand, you've got the defendant lawyers trying to paint another picture. Well, that image of disability as suffering, as arduous, as a problem, as a sin, still enthuses many people in society.
They don't you don't hear people saying, "You've got a baby boy, congratulations." "Oh, they're blind." "Oh, you poor thing." Like, that's the sort of language. It's still common. And you see that in a lot of media campaigns to try and attract money. So, particularly overseas and you look at the Convention of the Rights of persons with Disabilities concluding observations and, like, going through the Article, like COs, you see a lot of that sort of rhetoric happening overseas. And happens here in Australia as well.
And I think what we really need to do is take proactive measures reinforced by regulatory interventions that reinforce that positive language should be used, and those that use offensive language need to be somehow maybe not sanctioned by, like a fine, but it needs to be drawn to their attention that that language is not appropriate, particularly in certain professions.
MS EASTMAN: Now, you might find this a strange question for me to ask at this stage of the Royal Commission, but how can people without disability be better disability allies when it comes to choice of language? Angel, do you want to start on that question?
MS DIXON: I do. I actually want to just touch on, before we head into that one, on the link between language and representation that's here. Because I think that that kind of leads into the allyship discussion. A significant piece of the language discussion is actually identity and the feelings attached to the words because of the stigmas and institutional pressure that is we have. The way that people with disability represent themselves using language isn't static, and people identify differently in general, but they also identify differently as they learn and change and grow as a person.
And we need allow for that as a society. I wholeheartedly identify as a person with disability, and depending on how disabling the barriers around me feel, I will call myself disabled, but I absolutely know that my experience of disability and impairment cohabitate and react on each other, but I still separate disability and impairment out in my language to delineate between the role society plays in inclusion and that which relates to the individual. I also do it to help create space and dialogue about the dynamics at play within the community and the language used and the tools that we can use to move closer to inclusion.
So, my language doesn't even fit into a person first or identity first box. And I think the only way to ensure that all people can use words that are comfortable for them is for organisational, institutional and government and structural levels to intentionally consistently use human rights and CRPD inclusive language as a guide.
MS EASTMAN: And does this flow into education?
MS DIXON: It does.
MS EASTMAN: And the importance of education in people without disabilities being better disability allies? And I raise this because some people without disability may feel a nervousness about saying the wrong thing. And so rather than feel they've said the wrong thing or create an awkward situation, they may say nothing at all, and for the person with disability, that may be even more exclusionary than the opportunity to learn from a mistake. So, Angel, can you talk to how important education is?
MS DIXON: I can. I find it it's a really tough and nuanced question, because there is such a a dialogue in our community about, you know, some people want to be said hello to, they want people to come up and ask about, you know, why they use a wheelchair, and they welcome that. Other people don't. There's that real confusion and I call it exclusion because of confusion around language and also inclusiveness and welcoming in general.
I feel that, in an ideal world, if we all held a human rights and social model perspective of disability, along with an understanding that disability is a mismatch between person and environment, then those stigmas and the pressures that are felt by people with disability would decrease. Individual language preferences could prevail, and discussions around those meaningful and practical supports would be much more comfortable for everyone.
But, unfortunately, in our current environment, my suggestions would just have to be that people with disability needs without disability need to analyse the words they use as pejoratives, their perspectives on disability and impairment, and their views on human rights and also on segregation, because of our non-disabled perspectives that we live with, that analysis or that personal introspection will cost you a significant ego hit. It will mean digging deep into what you are what you potentially think about your own future, because the likelihood is that everyone will experience some form of disability or impairment in their lifetime.
But if you experience that ego hit, that's how you know you're doing it right. I also suggest that you always ask a person their preferred use of language, which is something we all know. And also to never tell a person with disability what words they should and shouldn't use.
MS EASTMAN: Paul, you work in circles at the university, and it's not uncommon for universities and for businesses to require staff to undergo what's now called disability confidence training, and part of that might be to give you confidence in the language that you use as an able person. Now, this is a very unusual theme, to have to teach people without disability to be confident around people with disability, and part of that is to get the language right. Paul, how do these programs work and what's your experience of whether they actually do something to change or to sensitise people to the language that they use.
ASSOC PROF HARPUR: I think a lot of it comes down to intent. So, if somebody comes along and does that sort of training but they have a good intent to be inclusive, even if they get language wrong at the end of the day, if someone has good intent then the person who's receiving potentially something they may not otherwise like is usually or at least I am, anyway more open to it. So, a good example would be a toddler. I used to cross a street near a primary school going home, and so kids will walk along and ask questions about the guide dog.
Now, they're kids, so I'm incredibly open and like to help them educate. That's because their intent is curiosity. And it's a good intent. They're trying to be educated. They're trying to learn. Someone who was potentially older who asked a dumb question or say something stupid, I may not have the same level of acceptance. But it comes down to intent. And I think the disability confidence training helps people who do want to do the right thing have some form of framework and confidence that they know the language.
And it is a shame that we have to relearn how we communicate, but you've got to realise that how fast has disability inclusion come. It's like a it's faster than I shouldn't use the example of a freight train, because I was hit by a train, but it's super fast. When I was hit by a train at the age of 14, people suggested to me a sheltered workshop. Now, people are suggesting to me it's time for a promotion to full professor.
So, we're looking at a very different world in only a very short period and that rapid change in how we view disability in society, I think, is why we need to do this, take this step and actually get out there and help communicate on how the new paradigm is meant to be communicated.
MS EASTMAN: That leads nicely into the next topic I want to ask both of you about, and that is to achieve success in changing attitudes and behaviours, it's the case, isn't it, that interventions must be targeted across key life domains and experiences for people with disability. And, Angel, I want to start by asking you about the importance of taking a whole of life approach to ensure that intervention impacts on the day to day lives of people, rather than keep them at these sort of abstract levels. Do you want to speak to that topic?
MS DIXON: Yes, I do. Thank you. Yeah, to me, on a good day, it still feels like we're being asked to choose which domains we want partial or compromised access to. I guess there's always competing needs in funding that it's always raised as a barrier to thorough interventions across all of the domains, but the reality is, is that interventions are needed across all domains because people with disability exist across all domains, and we interact with different domains throughout our lifetime.
And, currently, I personally feel like it is hard to dip in and out of those domains. They're all failing us in some way. The other thing to note is probably that initiatives to change societal attitudes are very important, but they're not going to succeed unless we address the structural and systemic issues that result in the exclusion and segregation of people with disability. And initiatives to change attitudes need to go hand in hand with initiatives to phase out segregation on a basis of disability, and we need to abandon those exclusionary practices and policies.
MS EASTMAN: Paul, you've touched on your experience of suggesting that your life might be one working in a segregated employment setting, but that's obviously not a path that you've taken. How important is it to speak to the experiences of people over key life domains to move away from segregation as being an option, or to also think about moving from segregated settings into a broader community experience? Do you want to speak to that topic, just taking from how Angel's described those concerns?
ASSOC PROF HARPUR: I can. I think institutionalising people in particular is against this CRPD Article 19. We talk we have to de institutionalise. We have to give support. The same with education. We don't want to have people stuck in special schools where they're not able to develop alongside their pierce. Same for workplaces. We don't want a social apartheid. But to get that fix, we need to actually put in place frameworks which will enable that to occur.
And that's attitude, yes, but as Angel observed it needs also some actual measures. So, the Disability Discrimination Act 1992 (Cth), for example, it's 30 years old, antidiscrimination. So, it talks of reasonable adjustments and accommodation, making changes when a person comes along, but there's no emphasis on positive duties, universal design. You don't want to have the situation where I hop off the bus and suddenly find if I was in a wheelchair, which on I'm not, but I suddenly find there's no ramp, no lift, the lift is broken. What do you do?
Well, if you're doing an exam in one hour, you've got to somehow get off that raised platform, get another bus, you'd just miss it. There's all the other efforts we can do, that's just a simple you cannot do that. So, these barriers in society, we have to resource. So, I started with institutionalisation. Well, you can close down an institution but where do people go? Where are they going to live? You need to have in place the health system, the social security system and a housing system that enables people to go from exclusion to inclusion in our society.
MS EASTMAN: Angel, one aspect of moving from exclusion to inclusion is leadership opportunities, disability leadership and representation. Do you want to speak to the importance of representation and leadership?
MS DIXON: I think Paul and I are doing a good thing where I kind of say the bad stuff and he does all the solutions based stuff, so I think we might stick to that format. But Paul has just touched on universal design, so in the same way that utilising universal design and inclusion solves human problems, not just disability, I think representative leadership does the same thing. Standard leadership literature reflects that leadership is a skill not that just people in power have. Anyone can be a leader.
And it's not widely understood that there is a difference between service providers and disability led organisations. I hope that it's already clear that people with disability need to be leading initiatives and organisations and content and research and anything about us, but also when it comes to revolutionising systems for inclusion I guarantee that a person with lived experience would do that faster and more effectively. There's so many examples
MS EASTMAN: Sorry, go ahead Angel.
MS DIXON: Sorry.
MS EASTMAN: There's so many examples?
MS DIXON: Speaking of this, particularly in my media and advertising work where you could try and effect the change from the bottom up, but it gets stymied at some point, and that change really needs to come from the top down. I feel that we're still at a point where people with disability in leadership roles are pioneering, which brings with it a greater weight to carry. They're not only trying to duty a path for themselves but they're trying to cut a path for other people.
And the most common access ones are the ones Paul has already addressed. How can you access leading when you can't access leading. And to compound that with my lens of media, the respective and acclaimed leaders in the disability space right now are repeatedly having their work overshadowed and reduced by journalists and media focusing on their impairment and challenges rather than their work in publications in large news segments.
Even our much needed leaders on social media experience silencing and abuse because of these pervasive attitudes. I feel that a solution for at least the media element is that traditional ways of working need to be redesigned to allow co design and self determination. At Attitude Foundation, that's what we work on. Our documentary series Perspective Shift were created in an effort to provide a platform of stories for people with disability, not simply leaders, but as it turned out, the constant self advocacy and barrier mitigation transformed all of the people in our series into leaders in some way, which sounds like a positive, but actually that's a really terrible negative because imagine what they could have done with all of that time and energy.
MS EASTMAN: Can I move to the next topic, which is some practical guidance and discussion about what interventions you think are most successful at changing attitudes and behaviours. And I think there's a few that we want to talk about, peer support role modelling, restructuring capacity building. Paul, can I start with you on this topic. What do you think are the most successful measures that really have the effect of changing attitudes and behaviours?
ASSOC PROF HARPUR: In that, there's a number. I mean, if you want to focus on the individual with a disability, role modelling is critical. But it's also critical for people without a disability. Take, for example, a university professor such as myself who's blind. All those students without a disability who see me see someone who's in authority who's, I hope to think, intelligent, communicating and doing their job. So, they have their views on disability shifted by my presence.
Those with a disability reach out to me, and I mentor a number of people, and they directly benefit. But also if you wanted to get into some other measures beyond just those mentoring, it's really creating frameworks, like regulatory framework, both in law and also in policy that shift, and I think strategy here is like, is critical so the action plans. Like at the University of Queensland we've had disability action plan since 1999.
And in recent times, we've had an organisational shift where there's increased emphasis on inclusion at the chancellery level and that that has a real impact on everyone across the university. And I could go on about how important leadership is, but I really, really cannot emphasise enough that you're a leader of an organisation, you need to look around, and if there's no one with a disability in senior positions, you are not representing your community, because at least 20 percent of the community has some form of disability.
And if you think about a university sector, at the University of Queensland, we have over 10 percent of our students, of our student population, has a disability, so one in 10 students. So, you need to have people with disabilities in senior positions throughout every organisation in Australia, because that is our community.
MS EASTMAN: And, Angel, what have you observed, particularly in your work at the Attitude Foundation and in your own life, are the types of interventions that are most successful at changing attitudes and behaviours?
MS DIXON: I think that, like I said earlier, I think all initiatives need to happen all at the same time so that we can really tackle this thing, and I don't feel anything's going to change until we really address those structural and systemic issues. I can probably speak a little bit to the peer support and role modelling in a bit of a different way to what Paul has discussed. 15 years ago when I acquired my impairment, as a with a complex diagnosis, I wasn't offered any peer support or mentorship. I had to source that for myself.
And through my work at the university now, I'm really aware of the impact that peer support or no peer support can have. I'm actually finding at the moment in health care that when I turn up for research interviews with people with newly acquired impairments, I'm spending most of my time teaching them how to manoeuvre a wheelchair, how to put on shoes with paralysed feet, or how to advocate for themselves in instances where they feel like their rights are being stripped from them. And I'm a researcher, and I'm the only peer support that they've had access to.
So, I feel like role modelling in those small areas has a lot to do with upskilling of people with disability, even though it should not be the role of people with disability to upskill themselves to fit into a system that doesn't work for them. As I've said, these things interplay. But this peer support has a huge impact, particularly from that very first instance in health care.
MS EASTMAN: Can I turn to the next topic, which is the level of intervention. So, just building on the discussion that we've had, and, Angel, if I've skipped anything or any topic that you've got notes on you want to speak to, just pull me back and let me know. But I think from a Royal Commission perspective, thinking about what is effective in changing community attitudes and looking at the way in which we're doing that at particular levels, be it at a relationship or community level, at an organisation or institutional level, at a government or structural level, there's a number of different ways of looking at when and how changing attitudes will be important.
But working out what's successful, what's going to achieve change is quite challenging. So, what, Angel, are your views on the level or the combination of levels that need to be addressed? Do you want to start on that topic, and then, Paul, I'll come to you.
MS DIXON: So, I there's so many things to address in that, and I'm frantically scrolling through my notes to try and combine them all.
MS EASTMAN: Take your time. There's no rush.
MS DIXON: Paul
ASSOC PROF HARPUR: Do you want me to go first?
MS DIXON: No, it's fine. Paul has already touched on universal design and accessibility, and I would like to talk, I guess, about a hybrid concept of universal design and inclusive design and bringing into that the difference between co design and consultation of people with disability. In the research that I do at the moment, we're actually working from a concept called extreme citizen science, because we've had to try and work around the barriers to academia, the barriers within education.
We've tried to come up with an ultra inclusive way to bring citizens into their own research, and I think that's something all these little things that people with disability are utilising or trying to come up with adaptations, those things need to be taken on board through every level. We need to make sure that we have leaders in place. We need to also make sure that there's opportunities for grassroots organisations to be able to feed up, and that we all need to acknowledge this human rights focus and perspective because that isn't always that human rights focus is obscured in the mix of all of the varying understandings of inclusion in our society.
MS EASTMAN: Paul, do you want to comment on the different levels from a very personal relationship level, community organisations and up to government? What is bringing these different levels together? What do you think is successful at changing attitudes and promoting change of behaviour?
ASSOC PROF HARPUR: Well, I think one aspect, we really need to create belief that people with disabilities are able to succeed and belong in society. I know that might sound a bit glib, but without belief, it's very hard to normalise inclusion. And I think it comes down to, could you imagine building a building without women's toilets? Well, when say, for example, Pound Hall at Harvard Law School was built, it had one in the basement. So, that used to be the norm.
We've shifted that and we could imagine excluding women by not having women's toilets in the building. Now, I want to see people with disabilities treated the same but no one could imagine not including us, so when someone designs a website, when someone designs a building, when someone designs a program, infrastructure, everything in society, people would not even contemplate not being inclusive.
And as far as government goes, I think I mean, I'm quite chuffed because literally to show a real world impact, during this Disability Royal Commission, the terms of the Reference Group for the Universities Accord was announced, and I'm on the Reference Group, and I've got about 40 emails from various people across the sector. So, if we want to see about changing views and making people with disabilities being people saying, "Hey, look, that person can succeed with a disability, therefore other people can", government, business, when you appoint someone with a disability to a senior position, it creates belief in others that this person can succeed with a disability and that others can.
Of course, let's not talk about that pressure that individual feels, because sometimes when I am succeeding and I'm the first person with a disability or one of the first to do something, it's people will almost go, well, whether or not people with disabilities can succeed, hinges on whether I do a good job, then that's a little bit of pressure. Sometimes I'd rather go home and not have to worry about.
MS EASTMAN: Can I ask you both now about the relevance of taking a human rights based approach in any intervention to address attitudes and behaviours? And, Angel, you've spoken to the CRPD and Paul, you've also spoken to the CRPD. And the way you've spoken about the CRPD is that it's not something extra or different. It's just woven into the way in which you talk about inclusion and change. What can we learn from using a human rights based approach in addressing changes of attitudes and behaviours? Angel, is that something you want to speak to first, and then, Paul, I'll come to you?
MS DIXON: Yes. Thank you. This might be a long one. I I think where I'm working at the moment in the health care system probably has the greatest evidence that we need change there, and it probably depicts the way human rights or the lack of human rights are playing out within our lives and in our systems at the moment. So, I'm going to speak to that a little bit.
Dignity is a word that's enshrined in human rights policy and frameworks, but as a concept, I feel it's somewhat lost in our health care system. There's been a big push toward from, I guess, the diversity and inclusion space, towards a human rights based focused on dignity, rather than inclusion. It's dignity that includes principles like inclusion, accessibility, and it acknowledges the inherent value of every individual regardless of position or power and privilege.
The cultural barriers that we've been talking about, I think are really gifted to us and reinforced in our health care system, and that's how they spread. I'm hearing stories, story after story, but I'm still hearing stories of friends personally who are pregnant and who have had a scan that suggests a specific diagnosis, and before they receive results or a social worker is called which is never offered doctors are still offering late term, terminations.
I personally know far too many people who've taken their lives because of unmet needs, harm, or medical and non disabled perspective on the way they should function or fit into the world around them, and those instances include the loved ones and supporters of those people with disability. Practitioners and staff are doing the very best they can in an under resourced environment, but we've ended up with a health care system that has very specific ideas on what health is and what quality of life is. Practitioners are so focused on recovery that they struggle to acknowledge people as people, and not a diagnosis or just a job to be done.
I think the other things that I can probably speak to here is an uncovering in our previous data of a study that we'd done which was this overwhelming cry from people with disability simply for acknowledgement. Acknowledgement not in spite of their impairment or identity, not because of it, and not transcending the challenges because they've achieved something. It's just being acknowledged as a human being with all of it with the same human rights, with the full dimension of personhood, otherwise known as dignity. And I think that's the true relevance, ensuring that everyone can enjoy their human rights under human rights laws, make sure that they feel protected and safe within those laws.
I think the only reason the only way that we can fix all of these things that we've spoken about is by targeting all levels and focusing on co design and not consultation, which means engaging people with disability at every phase in system and policy design, as well as utilising universal and inclusive design and transforming and transitioning out of non segregated models. And I think it's going to take a lot of time, effort and money, from an organisational and policy and government level.
MS EASTMAN: Paul?
ASSOC PROF HARPUR: Yes.
MS EASTMAN: Taking a human rights approach to interventions, how do you translate some of these human rights which are described in very broad and general terms into very practical ways of actioning change?
ASSOC PROF HARPUR: Well, I think the human rights sound broad, but if you actually pick up the Convention on the Rights of Persons With Disabilities, read it and read the general comments that the CRPD sorry, cough there the CRPD Committee have issued, there's a fair bit of fair bit of guidance there which we can draw from. And I think some of those need to be a recognition that it's just simply not acceptable for people to be ableist in certain situations. And I think we really need to take a strong stance where people in our community are especially vulnerable.
Say, for example, young children with a disability. Now, I've heard of a principal who told a kid a seven year old with Autism that unless they go out and play with other kids in the playground, they won't be able to go up in the next grade. Now, obviously, the child with Autism, which the principal knows, has a disability which reduces their desire to play with other kids. Now, I work as an academic, and if I had to say, "You have to love communicating with other people to be successful", a lot of my colleagues, particularly in the physics department, wouldn't be here. So, it was absolute nonsense, ableist. The board heard about that, their chair, their board, and nothing was done.
Now, could you imagine if that person, the principal had said something about, "You're Aboriginal so you can't be successful." "You're a woman." Well, they'd probably be sanctioned, maybe even dismissed. But it's because we accept ableism. And the other example, I'll build on what Angel said about the health care system. Well, it is a really big challenge for the health care system because the human rights framework is built on the social model which itself was developed to resist the medicalisation of disability.
The medical model is what drives the health care system. So, this is real conflict for them, because it's an issue on disability. And if you go with nothing about us without us, that's just for general society. So, you should have laws and policy decision making including people with disabilities. But if it is on disabilities specifically, such as the NDIS where I have to applaud the government for putting Kurt in charge Kurt Fearnley, sorry. We used to be Paralympics together, so there was no disrespect intended. Mr Fearnley on as Chair of the NDIA, I mean, that's what we need to see, it's disability specific.
What about the health care system? How much of that is to do with people with disability. You're rehabilitating people. Sometimes you're helping people survive for long term. So, people with disability should have a prominent and I would say leading role in AHPRA and other regulatory frameworks that deal with the health care system. After all, while a blind person such as myself can't mend a leg, for example, that's broken very easily, there's nothing stopping me being a successful administrator.
MS EASTMAN: I feel like we've just touched the surface, and I'm conscious of the time. Angel, can I ask if there's any other topics that I have overlooked in your notes that you wanted to speak to the Commissioners about, or anything else you'd like to share with the Commissioners as they think about ways forward in changing community attitudes and behaviour, building inclusion and moving away from segregation?
MS DIXON: I think that we should probably stop there, because otherwise I will continue for a few hours. But I could probably just echo Paul's comment, and I think I'm really glad that we're finishing here. Paul, even on our conference call before we agreed to do this, made a great contrast between the frameworks and things in place, the policies in place for in workplaces, for First Nations people in contrast to instances of discrimination against people with disability in the workplace.
And I find this in research, so I find this actually across all of our work in media. There are some very formal and practical policies at high levels about how to engage with First Nations people, and they're robust, and they in no way dismantle the complete myriad of barriers that are there, but at least they're a start to a more dignified approach. There is nothing in place for people with disability, and we've got a bunch of organisations and wonderful people that are trying to invigorate and start something that is consistent, but that really needs to happen from the top down.
MS EASTMAN: Thank you, Angel. Paul, any final observations or matters that you'd like to share with the Commissioners?
ASSOC PROF HARPUR: Yeah. Well, I would like to say something. When I I was at Harvard Law School when the Royal Commission was announced. And that was fantastic, because I had to give a speech that night and I had nothing to talk about. So, I could talk about how profoundly impactful this Royal Commission will be, and one of the tests I said was how bold will they be taking this opportunity, once in a lifetime, to shift the dial? Don't just tinker, don't do incremental but say something which will transform society.
Because if you look at it, 2,000 years ago, if you read the Bible, you had the beggar sitting by the side of the road, a blind man and going Jesus of Nazareth, calling out to Jesus and told to be silent, told to stay away, you're not part of society. Well, in many walks of Australian life, that still happens. People with disabilities are told to be, live somewhere separate, study somewhere separate. We need something profound which will shift thousands of years of exclusion. And no pressure to the Royal Commission, but you guys have the opportunity to change the world for the better. So, I hope you take that opportunity, and I look forward to reading the final report.
MS DIXON: Yes, we don't need any more awareness campaigns, thank you. Just putting that out.
ASSOC PROF HARPUR: No, robust laws. Robust laws, frameworks, like you just said, the Indigenous for example, in funding in higher education, you need to have Indigenous executives to attract the funding. Why is that not the case for disability? And it's not like we don't have people with disabilities in executive roles already, so it wouldn't be like you'd be saying you have to do this in an industry where there's no one.
Graeme Innes is now CQU Chancellor. You've got Executive Chief who's blind at Griffith. You've got there's people sorry, across the country already in such positions. It's about the about frameworks creating being created that ensure equality can be achieved and maintained.
MS EASTMAN: I think that's an excellent note to end on, and thank you both for your time and
ASSOC PROF HARPUR: Thank you.
MS EASTMAN: the preparation and, Angel, preparing all your notes for the discussion today. And we're very grateful for the contribution you've made to the Royal Commission. Thank you both. Chair.
CHAIR: Yes, thank you very much indeed for your thoughtful observations, and, Paul, for your exhortation to be bold. That's something that has occupied a great deal of our time. And we're very grateful to each of you for your suggestions and your insights. So, thank you very much indeed.
ASSOC PROF HARPUR: Thank you.
MS DIXON: Thank you.
MS EASTMAN: We'll adjourn for 10 minutes, but just before we do that, I'll just tender the more formal biography for Angel and Associate Professor Harpur's CV. If you could receive both those documents into evidence and mark them Exhibit 31 011.1 and Exhibit 31 011.2. I'm sorry, it's a bit clunky.
CHAIR: Sorry 31.001.
MS EASTMAN: 31 011.1 and 31 011.2.
CHAIR: Thank you very much. Those two CVs will be admitted into evidence with those markings,
<EXHIBIT 31 011.1 BIOGRAPHY OF ANGEL DIXON OAM
<EXHIBIT 31 011.2 CURRICULUM VITAE OF PAUL HARPUR
CHAIR: Are there any other documents for these witnesses?
MS EASTMAN: No.
CHAIR: Thank you very much again.
<THE WITNESSES WITHDREW
CHAIR: We'll now adjourn for 10 minutes.
ADJOURNED 2.57 PM
RESUMED 3.13 PM
CHAIR: Yes, Ms Eastman.
MS EASTMAN: Commissioners, I am very pleased to introduce you to our final witness for today, Margherita Coppolino, who's here with us in the hearing room in Brisbane, and perhaps, Chair, after you've greeted Ms Coppolino, I will introduce her and then we've got a lot of questions that we need to work our way through.
<MARGHERITA COPPOLINO, CALLED
CHAIR: Ms Coppolino, thank you very much for coming to the Royal Commission today at the Brisbane hearing room. We very much appreciate your attendance and we're looking forward to the evidence that you will give. Thank you for being prepared to help the Royal Commission. It's very important for us to receive help from you, and from others who are similarly situated.
If you will be good enough to follow Ms Eastman, she will now ask you some questions. Please take your time and if you need a break, just let us know.
<EXAMINATION BY MS EASTMAN AM SC
MS EASTMAN: Ms Coppolino, would you prefer that I call you Margherita or Ms Coppolino?
MS COPPOLINO: I would prefer if you call me Margherita. If I may call you Kate, Ms Eastman?
MS EASTMAN: Of course, you can do that. Now, I want to introduce you. You are an advocate and a disability and inclusion consultant, as well as an accredited trainer, mediator, auditor and company director, and these are some of the current positions that you hold. You are on the Subcommittee Co Chair of the International Lesbian Gay Bisexual Trans and Intersex Association, Oceania Board and the Director of that World Board; is that right? Yes?
MS COPPOLINO: Yes.
MS EASTMAN: You are on the Victorian Ministerial LGBTI Task Force as member.
MS COPPOLINO: Yes.
MS EASTMAN: You are member of the SBS Community Advisory Committee. You are a Council Member of the Victorian NDIS Community Advisory Council.
MS COPPOLINO: Yes.
MS EASTMAN: You are the Chair of the Ethnic Communities Council of Victoria, Disability and CaLD, so culturally and linguistically diverse, State wide Network. You are a member of the NDIS Independent Advisory Council Access and Inclusion Working Group. You are the Vice Chair of the Drummond Street Services and Queer Space Services. And you are a member of the CBA External Cultural Diversity Advisory Council Committee; is that right? And you up until October this year were the President of the National Ethnic Disability Alliance, NEDA, and you oversaw NEDA's work in preparing the joint submission with PWDA and FECCA that contributed to our recently Public hearing on CaLD and culturally and linguistically diverse communities; is that right?
MS COPPOLINO: My apologies, Kate, if I may. I actually didn't oversee the work for the Disability Royal Commission work that was actually done internally. I was President so, I actually didn't I did not actually do any of the internal work.
MS EASTMAN: You have done some work with the Royal Commission and assisted us on some community engagements.
MS COPPOLINO: Yes.
MS EASTMAN: And you're also aware of the work that the Royal Commission did as part of a closed session when the Royal Commissioners held Public hearing 17 looking at the experiences of women and girls with respect to family and domestic violence, and you're aware of that closed session work that we did with respect to LGBTI people?
MS COPPOLINO: I'm aware of that particular session, yes.
MS EASTMAN: Now, you describe yourself as a woman of short stature, a lesbian and a first generation Australian. Are there any other characteristics or adjectives that you'd like to describe yourself?
MS COPPOLINO: Yes, they are also known as my three closets.
MS EASTMAN: Alright. So, I have asked you to come to the Royal Commission to really draw on your experience, your life lived through these intersectional communities and lenses, and to the Commissioners about a vision for an inclusive Australia that really understands and works with the intersectional space. So, I'm going to ask you some questions around those areas. Please tell me if there's any questions that you don't want to answer, but otherwise can we go for it? So what is your vision of an inclusive Australia?
MS COPPOLINO: Well, Kate, before I start with my answer to that, there's something I'd like to do first. First of all, I'd like to begin the day by acknowledging the Turral and Jagera people here today, custodians of the land on which we are gathered today and pay my respects to their Elders past and present. I extend that respect to Aboriginal and Torres Strait Islander people here today.
I also wish to acknowledge Damian Griffis, one of the founding members of First Peoples Disability Network, and he is the CEO and has been for 22 years. Also would like to acknowledge Aunty June Reimer, who is the Deputy CEO, and not forgetting the amazing advocacy of the Deaf Deadly Mob, who give voices to all Aboriginal people with hearing impairment. I also would like to thank and recognise the leadership of Commissioner Mason as a First Nation woman in the Disability Royal Commission.
I also would like to thank Commissioner Galbally and Commissioner McEwin for their representation of disability and for the LGBTIQA plus community. As you see, I have a flag. So, I wanted to make sure today reflects all intersections. To have an inclusive Australia, we need to address the violent past of this country from invasion of this continent and onwards. We will not achieve disability justice until we reconcile systemic and institutional violence in Australia.
Colonisation causes disability and makes disability worse, especially for First Nations communities. We always need to have intersectional approach to make sure we are seen as whole people with multiple identities that need to be recognised and understood. Intersectionality means that when we think about disability inclusion, that no one is left behind, and everyone is at the table, included, participating fully in our community. A human rights approach to disability is essential for an inclusive Australia so that we can all enjoy our human rights on equal basis. And last but not least I have to turn the page, bear with me for a moment my vision of an inclusive Australia is when disability, the differences of our bodies and minds is understood, embraced and accommodated and celebrated as being completely normal and part of the human condition. That's my answer.
MS EASTMAN: Thank you. That puts a big challenge to us. I want to ask you how, in addressing vision of an inclusive Australia, do we ensure that the intersectional experiences are captured rather than siloed off?
MS COPPOLINO: That's a relevant question, and I've thought quite a bit about this. So, first of all, I'd like to start by saying every person has multiple intersectional identities. For some, their intersectional identities may provide a degree of comfort. But for others, it may result in more discrimination. Some women are at higher risk of different types of discrimination, such as racism, class oppression, homophobia, transphobia, age, ageism, ableism, disability, just because she has a variation of sex characteristics.
The intersectional approach suggested that tackling disadvantage in one group may not address discrimination and marginalisation experienced by all other groups equally. Therefore, work to prevent gender based inequity cannot be concluded in isolation from, work to address other forms of discrimination. We need to work as a collective. People with disability chose to organise ourselves in intersectional community.
We have a Disabled People’s Organisation specifically for First Nations people, women and girls, people from non English speaking background, people from LGBTIQA+ background, et cetera. It is important that we are resourced and supported and organised how we choose to. Last but not least, organisations and services that have cross disability approach or a disability or populations specific approach, also needs to work in intersectional ways.
For example, on this day, I am a member of a short statured people’s organisation but I'm also a woman, I'm also a lesbian, and I need my short statured organisation to think about gender and sexism and provide supports and advocate on issues specific to women who are short statured. Similarly, I need them to understand the specific discrimination that lesbians with disabilities face. When those organisations do work sorry, when those organisations do work about sexual and reproductive rights, they need to include lesbians in that work and make it relevant and meaningful.
MS EASTMAN: Now, you've been very generous in working with the Royal Commission and to me personally, in teaching me about the importance of co design and understanding what that actually means. So, can I ask you to talk about the role of co design in capturing international experiences, and why is that so important that we do co design rather than just go a consultation or a coproduction?
MS COPPOLINO: Great question. Kate, I know you and I have had many discussions around what co design means and what is best practice. But for today my answer is that general co design is critical in capturing intersectional experience. Unfortunately, we see the term co design being used when what is actually happening is actually something else. For example consultation. Not my experience with you.
MS EASTMAN: Thank you.
MS COPPOLINO: I've been involved in too many different spaces which have been called co designed but it felt like tokenism. Government, private, public sectors and provider of services to people with disability need to work with us as people disabilities. Including people from First Nations background, women, people from CaLD background, people from LGBTIQA+ communities so that when laws are being developed, programs and services designed, that intersectional experience and needs are understood and through true co design are made inclusive, making sure that nobody gets left behind.
MS EASTMAN: So, is there a role for an inclusive framework to ensure different aspects of diversity can be considered holistically all together?
MS COPPOLINO: Once again, great question. Yes, of course, an intersectional inclusion framework would ensure different aspects of our diversity are considered. So we are seen as a whole person, not just one or two parts of that. As I said earlier, I've got many different intersectional lens I need to be seen as a whole person, not just a person of short stature, but also as a woman, a person who's hard of hearing, a lesbian, a care leaver, a survivor, a person from a CaLD background, a worker, a volunteer, a changemaker, et cetera. Truly person centred approaches are essential so that we provide adjustments and support and wrap programs around people with disability, rather than trying to get us to awkwardly and uncomfortably fit into environments and services that leave important parts of our intersectional identities behind.
MS EASTMAN: Alright. Now this could be me, but, Chair, we just need to have a very short moment because some of our audio's not working very well at the moment. The Commissioners might be aware of that as well. So, if we could have a short adjournment. I'm sorry, Margherita.
CHAIR: Do you want to adjourn or shall we wait here?
MS EASTMAN: I think a short adjournment just allows us to test things.
CHAIR: Okay. So, I'm very sorry about the interruption.
MS EASTMAN: Margherita, my apologies. We'll just fix up the audio. Thank you.
CHAIR: Thank you. Well, we'll adjourn.
MS EASTMAN: We'll let you know.
CHAIR: Thank you.
ADJOURNED 3.28 PM
RESUMED 3.34 PM (audio not working)
MS EASTMAN: Margherita, let me know if the live captioning is coming through now.
MS COPPOLINO: Yes, it is now.
MS EASTMAN: All working now. Okay.
MS COPPOLINO: Thank you.
CHAIR: It is. It's working.
MS EASTMAN: If it pops off again let me know.
COMMISSIONER RYAN: I can hear you beautifully now.
MS EASTMAN: Alright. I want to move to topic two, and I wanted to ask you about what needs to be in place to support ongoing advocacy, including formalised advocacy through advocacy groups, but also building skill and capacity for self advocacy. The role of advocacy is something that the Royal Commission has examined, and you've heard us speak about the work and the importance of advocacy, both at a group level but also at an individual level. So, what do you see as the importance of or the role of advocacy?
MS COPPOLINO: Another great question. It's probably one of my favourite questions. Advocacy seeks to ensure that all people in society are able to have their voices heard on issues that are important to them. Protect and promote their rights. Have their views and wishes generally considered when decisions are being made about their lives, and to speak for themselves.
MS EASTMAN: So, there's different types of advocacy and why are those different types important if, for example, we look at the formalised advocacy work of advocacy groups, individual advocacy or self advocacy? Do you want to speak to that issue?
MS COPPOLINO: Well, look, you know, all parts of advocacy are important for the wellbeing of our disability communities and for us as individuals. Advocacy makes our lives safer and helps us to equally enjoy our human rights. It is a shame that governments have historically viewed some forms of advocacy as more valuable and more important than other forms of advocacy. They are all equally important. This has been a real failure of governments.
I have utilised and benefitted from nearly all advocacy types in my 62 years as a person with a disability, and I've listed a few of them. This includes, one, self advocacy. I've learned skills about how to speak up for myself and defend my rights. Individual advocacy. Sometimes I've been ignored and been too beaten down to self advocate, so I've got professional advocates to support me and sit beside me and advocate with and for me.
Systemic advocacy. I'm a participant of NDIS and NDIS would never have been created had it not been for systemic advocacy that people with disabilities and Disability People's Organisations fought for. Legal advocacy. There are times in my life where I've been discriminated against and got advice and support from disability legal advocates so that I know my rights and how to use complaint mechanisms to access justice.
Peer support. So, Disability People's Organisations have been very important to me. Being in groups and organisation with other people with disabilities like Women With Disabilities Australia, People with Disabilities Australia, the National Ethnic Disability Alliance, Short Statured People of Australia, and last but not least, one very close to my heart, Inclusive Rainbow Voices, LGBTIQA+ People with Disability you'll be hearing more about them has helped me gain support and made me feel stronger and more confident as an advocate.
And last but not least, although I haven't personally used family advocacy or the citizen advocacy services, I have a lot of respect for what they do, particularly for advocating for the rights of children with disabilities and their families. Citizen advocacy makes amazing difference in the lives of people with intellectual disability, many of whom have no families or friends. Breaking their isolation and loneliness, that makes a world of difference.
MS EASTMAN: Just on that very point, Margherita, Commissioner McEwin asked this question, that in relation to advocacy, what can you tell the Royal Commission about those people who don't have access to advocates for people, for example, who might live in group homes? You've just mentioned the importance of citizen advocacy making a difference. Is there anything you want to expand on, on that?
MS COPPOLINO: Sorry, Kate, I
MS EASTMAN: Captioning has gone?
MS COPPOLINO: It's disappeared again. We've got a bit of an IT, artificial intelligence stuff happening here?
MS EASTMAN: Okay.
MS COPPOLINO: good.
CHAIR: Has it come back?
MS COPPOLINO: Now it's come on again.
MS EASTMAN: Okay. So, the question from Commissioner McEwin touched on that last part of your response where you spoke about citizen advocacy making a difference in the lives of people with intellectual disability, many of whom have no families or friends. So, the question is what can you say, if anything, in addition to what you've just said about people who don't have access to advocates, for example, people who may live in group homes.
MS COPPOLINO: Okay. So, Commissioner McEwin, you put me a bit on the spot here. That's okay. I probably need to process that question, if I may. Can I come back to it?
MS EASTMAN: Margherita
MS COPPOLINO: But I will come back to it, I promise.
MS EASTMAN: Margherita, if there's any questions like that that we haven't talked about in advance and you'd like time to think about that
MS COPPOLINO: Yes.
MS EASTMAN: then I'm sure we can also come back to them later or maybe even think about a note that you want to send to me later, and we can provide that to the Commissioners. Right. I'm getting a nod there.
MS COPPOLINO: Thank you.
MS EASTMAN: Can I come back to what needs to be in place to support ongoing advocacy generally. This might raise some issues around funding, capacity building, access to information and information in accessible formats. So, this is really a question about how you support advocacy. This is something I know you've got some strong views on. What would you like to say about that?
MS COPPOLINO: I have. Just getting that question from Commissioner McEwin out of my head, move that I'm just moving it. Now back to what I've got here. Okay. So, my answer to this, Australia has obligations through the Convention on the Rights of People with Disabilities, better known as the CRPD, to provide disability advocacy programs and support for Disability People's Organisation.
Disability advocacy is very underfunded, and yet it delivers significant positive outcomes for people with disabilities and society as a whole. Disability advocacy makes good economic sense and saves money - just going to turn the page - and being spent on more expensive interventions and supports in the area of employment, health, homelessness, et cetera. All forms of advocacy have an important role, and they all need o be adequately funded so that disability advocacy organisations don't have to turn people away or have long waiting lists and only work with people who are in crisis. We need more effort in building self advocacy skills and providing us with information about our rights and where we can get help in accessible formats.
MS EASTMAN: How are those skills built and how do you improve capacity for self advocacy? If you want to talk on some very particular things that could be done?
MS COPPOLINO: Well, yes. Definitely support people to know their rights. Have more self advocacy organisations and organisations supporting self advocacy like the excellent Self Advocacy Resource Unit in Victoria. They do fabulous work and have for a very, very long time. Provide training for people with disabilities on how to self advocate so that we know how to speak up and be heard and how to navigate internal and external complaint processes.
Some disability organisations provide peer support, mentoring and self advocacy training. The best self advocacy training is provided by other self advocates. Why not teach kids with disabilities about their rights and self advocacy skills in schools, in earlier parts of their lives. This gives them some of the most useful knowledge and skills that they will need to use throughout their lives.
Poverty and not having access to information via technology are massive issues in the disability community. I've heard of self advocacy groups giving out free mobiles with free plan data packs so the person with disability, they are able to make phone calls, look up information and connect with other people with disabilities, friends and family. Simple and cheap idea that makes a big difference and means the person can self advocate. We definitely saw this being very helpful and inclusive.
MS EASTMAN: I want to move to a different topic now, which is about community attitudes and particularly changing attitudes towards people with disability, and we've spoken a little earlier today with Angel Dixon and Paul Harpur about community attitudes. You might have heard some of that discussion. But you wanted to say that it is important, in thinking about community attitudes and change, to not leave behind culturally responsive and trauma informed practices. So, in that context I wanted to ask you why is it important that people have the opportunity to share their experiences in a safe, supported and culturally responsive environment?
And I know you have a lot of experience in doing this work and you've got a very good sense about what is actually culturally safe and responsive or trauma informed, but you also know when people say it, and it's not actually practised. So, I wondered if you could tell the Royal Commission about that importance of sharing experiences in safe, supportive and culturally responsive environments.
MS COPPOLINO: Yeah, look, this is a question very close to my heart. Professionally and personally. So, if I get a little bit emotional, please bear with me.
MS EASTMAN: That's quite alright.
MS COPPOLINO: And it's different for everybody. Everybody has their own understanding of cultural safety and what it actually is. So, it's vital to provide people with disabilities with skills to share their feelings, but we need to be aware of the risk of sharing our stories and know how to do it in a way that's safe. It is okay not to share our stories too. We shouldn't expect it of ourselves or other people with disabilities, they have to share stories, especially for things that have been harmful or that cause suffering and pain.
MS EASTMAN: Take your time.
MS COPPOLINO: Inspirational porn and trauma porn are dangerous for people with disabilities. Our stories, if we choose to share them, are powerful thoughts, and they can and do create change, but we need to do it in the safest way possible, and going to know what risks are. Disability Peoples Organisations provide culturally safe places for us to share our stories with each other. We have shared our histories, similar experiences. We get each other.
We know what it's like to be excluded, segregated, discriminated against. We don't need to explain to each other what it is like. Trauma informed supports are so important for our safety and for us to heal from the violence and injustice that we've lived through. We need more skilled, trauma informed workers, counsellors to take the trauma informed approach in our peer support self advocacy spaces.
MS EASTMAN: What needs to be done to build the framework around people to give them the opportunity to share their experiences in a way that is culturally responsive and trauma informed?
MS COPPOLINO: I never thought I would say I have a shorter answer. But this one I do. I think it is evident. We need a commitment coming out of the National Disability Strategy and the State Disability Plans and Strategies to build a self advocacy framework to focus on peer support and train the trainer approach to building a network of self advocates who will have experts in self safe story telling for advocacy.
MS EASTMAN: Do you think that practices that are culturally responsive and trauma informed can become vehicles for change of addressing attitudes and rethinking the way we approach disability?
MS COPPOLINO: Another great question. I could go on and talk till the cows come home, but I don't have that time. However, this Royal Commission is an example of how people with disabilities is proof that by telling your story, positive change will happen. We are sharing our stories so our experiences are understood and the terrible things that have happened, have been done to us, to prevent it from happening again. We are sharing our stories so that society will think differently about disability and see a difference in bodies, mind, communication, health as just a normal part of being human.
At the end of this Royal Commission, we need to continue to have justice settings where we, as people with disabilities, lead and are the centre of the conversation about disability. We need to keep having spaces where we can share our stories, tell our truths and have avenues for making change from our expertise.
MS EASTMAN: Now, I want to turn to a different topic. This might be a bit of a law topic, but when we were talking about you thinking about the topics you wanted to speak to the Royal Commission about as a vision for an inclusive Australia, I asked you about the law. And you've spoken earlier about advocacy and where you've had experiences of discrimination, knowing what your legal rights are and how to exercise those rights.
So, I asked you whether you wanted to say anything about the Disability Discrimination Act, which is now 30 years old. And I'm not going to get into the nitty gritty of the Disability Discrimination Act, but I just thought I'd ask you what your reflections about 30 years of the DDA mean to you? Do you want to speak to that topic? If you don't, you don't have to.
MS COPPOLINO: Look, I giggle because I just want to declare I'm not a lawyer. I'm not a human rights lawyer. But I'm talking from my experiences as a person with a disability.
CHAIR: We can't be perfect, Ms Coppolino.
MS EASTMAN: You don't have to answer that question. So, reflections on 30 years of the DDA.
MS COPPOLINO: Thank you very much. For me, the DDA has mostly been disappointing. We haven't seen the transformations in the lives of people with disabilities, our built environment, workplaces, schools and public transport. We still see inaccessible buildings being built. We still have inaccessible public transport in our major cities. We still have special schools, sheltered workshops, disability institutions like group homes. Young people with disability living in nursing homes because they don't have anywhere else to be. That's not okay.
The Disability Discrimination Act exemptions and the very low bar of unjustifiable hardship means that the DDA doesn't do what it means for us. We see people with intellectual disabilities being paid a few dollars a day for work in sheltered workshops, known as . It's unbelievable that the Commonwealth Department of Social Service got an exemption for the DDA so that they continue to do discriminative acts, discriminative tools towards people with intellectual disability.
The DDA no longer is effective. We need to reform to ensure operational that it works well for people with disabilities who are discriminated against so the DDA moves beyond disability rights and accessibility forward. The DDA hasn't been able to shift the view of people with disabilities as a burden. The risk of costs being awarded against us when we make complaints to a court prevents us from using the law to resolve our discrimination complaints. And the people who discriminate against us know and exploit that power of imbalance.
As well as needing reform of the DDA, we also need a Human Rights Act in Australia that protects and upholds the rights of people with disabilities. The DDA fails the requirements of Disability Action Plans, or better known as DAPs, to take an intersectional approach. The inclusive culture of businesses and workplace is not going to change unless we require it. It is an intersectional of identity that discrimination might be occurring. But you can't use the DDA in that way.
MS EASTMAN: I think it's fair to say that 30 years of DDA has created disappointment to you; is that right?
MS COPPOLINO: Yes. You know, I got asked this not long ago, to be actually on a forum to discuss it, and they said, well, we'd like you to talk about positive experiences. And I said, well, for me in the 62 years and 30 of them I've had the DDA, I'm still horrified with just how inaccessible things are, and constantly having to remind organisations that, where's the co design, where's the consulting with people with disabilities, and why are you designing products that are still inaccessible for people with disabilities? And we have to go back and we have to pay for modifications or reasonable adjustments to use them, where if they design with people with disabilities in mind, then we wouldn't need that money to create reasonable adjustments to use the inaccessibility of things in our lives. Anyway, don't get me wrong .
MS EASTMAN: No, I think you and I could have spoken a lot about the DDA, but one part of the DDA which has caused you a lot of interest is section 29 of the DDA. And, Commissioners, you've got a copy, I think, we've distributed. It says and I'll just read it for people who may not have it readily to hand. So, section 29 of the DDA is headed ‘Administration of Commonwealth Laws and Programs’ and it says:
"It is unlawful for a person who performs any function or exercises any power under a Commonwealth law or for the purpose of a Commonwealth program or has any other responsibility for the administration of a Commonwealth law or the conduct of a Commonwealth program to discriminate against another person on the ground of the other person's disability in the performance of that function, the exercise of that power or the fulfilment of that responsibility."
And when you as a non-lawyer, reading that, you say, well, shouldn't this mean that our politicians and those involved in developing policy in relation to disability have an understanding of their obligations under the DDA, particularly section 29. So, I'm going to ask you about that as a non-lawyer. What do you think should be happening for our politicians and those involved in policy making across the country when you think about what section 29 should be doing? What would you like to say about that?
MS COPPOLINO: It's a great question. I'm surprised that this often doesn't get talked about, so I would say that what we need to see is awareness raising of the DDA with politicians in government across the country. It would be great for them to undertake disability awareness, equity and intersectional training intersectionality, I should say. We need politicians to have an awareness of their own unconscious biases and privileges when it comes to making decisions that impact on the lives of people with disability. We need to ensure that parliaments are accessible and parliamentary and electoral offices are accessible for people with disabilities, because they often aren't. If we can't get in the front door, how can we have conversations with politicians about what they're doing, and what they're doing in our lives.
MS EASTMAN: Now, this led us to have a discussion about issues around governance, leadership and decision making, and I want to turn to this topic in terms of promoting opportunities for people with disability to participate in governance, leadership and decision making. So, what are your personal reflections, from being a member of several different boards, on the importance of people with disability participating in governance, leadership and decision making? Because you have been you've been and you still are on some pretty influential boards. So, tell us about how you've experienced the opportunity to show your leadership to participate in governance and be a decision maker?
MS COPPOLINO: Well, my answer to that is it is essential that people with disabilities are given opportunities and support to lead, to sit on board and to be at the table where decisions are being made, where decisions are made when we're not there. By being on leadership positions and being on boards, we often educate those around us, the non-disabled leaders and directors about disability and reasonable accommodation and intersectionality.
MS EASTMAN: I'm just keeping an eye on the time, so I'm going to jump to a question, because I want to stick on these issue about participation in decision making at a political level. For example, in state and federal parliaments. So, can I ask you what needs to be done to support people with disabilities having that opportunity? So, I'm going to jump a page, if that's okay. So, number 16, we're up to.
MS COPPOLINO: Okay, I've got my part now.
MS EASTMAN: Okay.
MS COPPOLINO: Thanks for my reasonable accommodation and it didn't cost me anything. Some accommodations are no, sorry, I read that. Okay. So, in answer to your question, we need to see more people with disabilities making decisions at political levels. This will significantly improve the disability inclusive quality of decision making, and the lives of people with disabilities. Just as we've seen political parties looking into the ideas of quotas for women to address the gender imbalance and the inequities, we need parties to be having a strategy for raising the numbers of politicians with disability. We also need to see more people with disabilities in political staff, chief of staff, advisers, et cetera, so that people with disabilities are supporting the decision making and as peers, educating the broad disability community.
MS EASTMAN: Related to that, is it important for politicians to receive training on disability awareness and how to apply disability lens to their work? I know this connects in with our discussion a moment ago about section 29 of the DDA.
MS COPPOLINO: Okay. A clear parliamentary code of conduct and ethics for politicians and their staff would be a good idea. The code of conduct should include standards that prevent ableism, discrimination, and violence against people with disabilities. The code of conduct needs to have independent oversight to handle complaints and assist with its implementation. Sitting alongside the code of conduct should be training on disability awareness and unconscious bias and intersectionality. That should be mandatory.
MS EASTMAN: Do you think it's important for environments like parliament to be inclusive and welcoming to people with disability? And if your answer to that is yes, how can that be achieved, given the grandeur and the formality of parliament? How do you do that?
MS COPPOLINO: Anything is possible. I keep saying that. We all know that. Things can happen . But before we see more people with disabilities entering parliament, we need to make parliament buildings and parliamentary offices fully accessible so that we can actually get into the space. It would be good for parliaments to think about how they apply the DDA, that word again, both at their workplace and place where people with disabilities access as visitors or workers, or politicians. Accessible guided tours of parliament buildings for the Deaf, hard of hearing, blind, vision impaired, Deafblind people would help members of the disability feel much more welcome.
MS EASTMAN: The last topic I want to talk to you about is an overarching theme, and that is what needs to be in place to achieve transparency and accountability in the realisation of human rights under the CRPD. That's an enormous I don't know how you're going to answer that in the time that's available. It's a very large topic, but I know you've thought about the key points you want to make in relation to that question.
MS COPPOLINO: Yeah, I've done a lot of pondering and thinking, bouncing off. This is what we've come up with. All of Australia's laws to be compliant with the CRPD, as in the rights Convention on the Rights of People With Disability we need an increased awareness across government and communities on the CRPD. We need the government to remove interpretive declarations against Article 12 on legal capacities, Article 17 on forced treatment and Article 18 on the migration of people with disabilities.
These interpretive declarations inflict violence and discrimination on people with disabilities. We need government to implement all of the 19 sorry, the 2019 Concluding Observations and recommendations from the last time Australia appeared before the CRPD Committee. That's all I have to say.
MS EASTMAN: Is there anything else that you would like to say, or while you have the six Commissioners here, about what you would like to see in the future, or even your expectations of this Royal Commission?
MS COPPOLINO: If I can be cheeky and bold?
MS EASTMAN: Be cheeky and bold.
MS COPPOLINO: As I have prior to this. I would like to see people with disabilities involved in the recommendations of the DRC Final Report. Chair, I'm just putting it out there. But I think that would be co designing of recommendations. Whether that's possible, that's I'm . More importantly, I particularly want to say that nothing is impossible, and I am I don't want to say I'm saying it in the sense that I am really pleased that there are lots of young people with disability in the community. I'm excited by them taking the lead from here. We need to get it right for them. We need to support them to make a difference. If we don't do it, it's never going to happen. That's all from me. Thanks.
MS EASTMAN: Thank you, Margherita, for your contribution, not only giving evidence today, but all the work that you've done behind the scenes with the Royal Commission. We're very grateful. Thank you very much.
MS COPPOLINO: Thank you.
CHAIR: Ms Coppolino, I would like to echo that on behalf of the Commissioners. Thank you for your contributions multiple contributions to the work of the Royal Commission. Thank you for your thoughtful and your bold and cheeky evidence that you've given today. It's very helpful to us. I know that the views that you've expressed represent those of the very many people with who have experience of multiple forms of disadvantage, that is, people with disability from whom we've heard, but your evidence has been very powerful, as far as that's concerned.
Thank you also for the kind words you said about the Royal Commission in the course of your evidence, and on behalf of Ms Eastman, I thank you for your commendation to her for asking, on my count, five great questions. So thank you very much. And I'm sure Ms Eastman thanks you too. Thank you very much.
MS COPPOLINO: Thank you, and may I just thank Matthew Bowden as well. Thank you.
MS EASTMAN: Yes.
MS COPPOLINO: Thank you.
MS EASTMAN: So thank you also to Matthew Bowden who's here providing support and also in his own right for all of the work that he's done around disability advocacy, Chair. He's often been very much behind the scenes, but really supporting our witnesses as they've given evidence in the Royal Commission. So, again, we're indebted to your assistance. Thank you very much.
CHAIR: Yes. Let me again add to that, Mr Bowden. Thank you so much for your help as well.
MS EASTMAN: Chair, that concludes the evidence today. I think Margherita may take on notice the question that Commissioner McEwin asked, and there's one follow up matter Commissioner Galbally raised with me, but we might follow up through as well. And that concludes the proceedings for today and we'll resume, Chair, at 10 am tomorrow Brisbane time.
CHAIR: Thank you again, Ms Coppolino. We'll now adjourn until 10. Thank you.
<THE WITNESS WITHDREW
ADJOURNED at 4.10 PM UNTIL THURSDAY, 15 DECEMBER 2022 at 10 AM