Transcript 1

Keynote Speaker – Senator Jordon Steel-John

AFDO Next Wave Advocacy Conference.
21 October, 2019.


SENATOR STEELE JOHN: I come from WA, Western Australia, and my part of Western Australia is the land of the Wujop people of the Ngaarda nation.

I work primarily on the lands of the Ngunnawal and Ngambri people and it is an honour to be here on the lands of the Wurundjeri people of the Kulin nation. I pay respects to their elders, past, present and emerging and acknowledge sovereignty over the land on which we meet was never ceded. As we work together to build and promote a disability rights movement, we must always remember that it must be intersectional and recognised at the very core of it that we must be guided by first nations folk in respect of intersections of disability and race.

I would also like to thank and acknowledge, particularly Ross and Patrick, for their fantastic advocacy work at the federal level. In the last two years that I’ve been in this job, it has been an absolute pleasure to work alongside both of you gentlemen in the promotion of disability rights in the parliament and to have AFDO in there, always, in the trenches, fighting for the rights of disabled people and our families.

I’ve got to say, it is a wonderful thing to be here with you this morning as we consider the future, not only of disability advocacy in Australia, but more broadly the future of our disability rights movement. One of the most exciting, dynamic and urgently required social movements in Australia today. Thank you very much for this opportunity to talk with you all. And I’m going to say, while I was in the air, scribbling some notes for today’s presentation, I was thinking about how far we seem to have come in the last 10 years or so as a disability rights movement, and yet how far we still have to journey together.

I often think that it’s really important to remember, when we talk about these issues, that we ground ourselves in that fundamental truth that to be disabled in Australia is to it is to love, it is to live, it is to hope, and dream and strive, just as any other person would. But it is also still so much to experience that burning deep inside that comes when so casually you are the subject of discrimination, so casually your rights are thrust aside. It is to struggle against that discrimination, to struggle against that hate so often, to assert your fundamental shared humanity.

Now, as disabled people in Australia and around the world, for the last few decades we have been building and growing our movement and striking blows against the ablest barriers that exist in our community and around the world. And we have had many successes in that effort. Two or three decades ago, all around the globe, disabled people began to realise our rights in the legislative form, in Australia, in America, in the UK, and the EU, rights were declared and enshrined in legislation and it was proclaimed that we were equal. And that we deserved to live free of discrimination. Those were not words written into law out of the goodness of the hearts of legislators. They were hard won victories.

I’ve got to say, my mind goes back to some footage that I’ve watched recently of a couple of nonviolent direct protests in Melbourne about the non accessibility of the tram network in Melbourne and the proclivity to lock themselves on the trams, and I see an inaccessible tram I think there have been progress but still some room to go and if they’re not careful I will bloody lock myself on one. It wasn’t perfect, the movement we built together. It was often led, sometimes dominated, by physically disabled people.

There weren’t as many voices of intellectually disabled folks, nor diverse folks. We focussed on the physical manifestations of discrimination. We often didn’t quite liberate our mindset from the medical model of disability. Many of us made the argument that if only the ramp was installed then naturally we would ascend to the same plane as everybody else, because obviously, it’s just about trying hard enough and then we’ll just kind of get there. And we also put our faith in the idea that if the law changed, society would change with it. And as we worked away on this movement, we often did so in silos, silos created by the very nature of those support systems that were brought into being, kind of spread out across the entire country.

In 2009, we had the opportunity, with the recommendation of the NDIS, to start linking some of that back together, to start talking about a national programme for the provision of our supports. But it would be based in a human rights framework, that would give us the opportunity to recognise the fundamental interconnectiveness of our struggles as disabled people, whether we be physically disabled or journey with cognitive or intellectual disability or physical disability. At the end of the day, the barriers might look different, but what is burning inside is from a different source, but fundamentally it is the same struggle. We fought for that reform. We fought hard for that reform. The outcome wasn’t perfect but at the end of it we managed to extract from a legislature, which for decades had sought to avoid any federal responsibility for the tearing down of those barriers that are created by ablism in society, we managed to extract a commitment to a scheme, guided by disabled people, for disabled people, that would empower us to break down those barriers and live with dignity. We won that campaign and together laid a foundation for a shared future in the Australian community, a shared equal future.

Now, as First Nations people have so wisely taught us over so many generations, however, there can be no shared future without first a process of justice and truth and healing and story telling. So, together we also pushed and advocated for an investigation, for a royal commission, that would be able to go into those dark places into which we have been so long been condemned, to seek out the truth and to bring the perpetrators of violence and abuse and neglect and exploitation to justice. To put before the Australian community the realities of our condition, the realities of their ablism, their prejudice, confront them, look them in the eye, and put in place those systems and processes needed to make sure that such things never happen again, fought for that and we also won, and together brought into being those two institutional foundations that are needed to create that shared future. Those now exist. Those foundations have been laid and we, together, took up the job of their dogged and determined defence.

Now, as we all know, they have needed great defending. The promise of the NDIS, of transformational change, of the empowerment of the individual, that famous phrase “choice and control”. That promise has so often been broken in relation to so many. It is drifted from an insurance scheme dedicated to the upholding of people’s rights into further, further corporate approaches to what should always be a fundamentally human based programme. Too many of the ills of our social security system have seeped their way into our NDIS. It has been too mutilated and morphed by folks running it in senior positions who don’t have that fundamental understanding of what disability is and what we must together do to break down those barriers.

However, regardless of how much it has drifted, within its very heart, within its founding legislation, within the rhetoric used to bring it into being, there is still that check, that promise of independence, that foundation, which we together continue to fight for the realisation of. And so too with the royal commission. You know, it was an incredible thing to be part of that moment in parliament where that legislation was finally agreed to. I cannot impress how much people in that building did not want to take that step, how thoroughly that had been resisted, how absolute was the commitment to make sure that regardless of how loud we made ourselves they wouldn’t move. But we kept on and we kept on and we kept on. And together, we dragged them, kicking and screaming, to the announcement of that commission. And since then, we have seen problems continue, problems with the people that they picked to be our commissioners. And now problems with the timeline that they are proposing in terms of the first hearing into issues around education and around housing.

There still remains much defence to be done. And we must remain clear in our conception of this royal commission not as a mechanism that we can leave alone to do justice for our community, but a tool that we have claimed in our hands which we, together, shall wield against ablism and discrimination and hatred, to together bring down those walls. When those recommendations come out, we will again, together, need to continue that push to make sure they become reality. This is all work ahead of us. But as is so accurately captured in the theme of this conference, there is now a new wave of energy in our community. We have succeeded, we have laid these foundations together. Their defence is needed. They are under assault, but we are there together. We have the ability to do great things. We are now a radically inclusive movement, united by our shared struggle, proud of the shared power that we possess, given fire by the knowledge that our humanity will never again be subject to the convenience of others. United in the knowledge that that shared future of equality and of liberation is within our grasp that we together are rising free of the chains into which we have been incarcerated for so long.

Fearlessly we head now towards that future of equality, of liberation, for all of us. So that no generation, no disabled child, ever again has to wonder whether their rights are a gift to be handed down to them, but knows inherently that their humanity is born within them, and their rights made material are the birthright of their existence. It is to this great aim that we are now directed. It is to this great aim that I worked every single day in Canberra. It is to this great aim that I am so thrilled to be joined by AFDO, by all of you. It is this future which I am so excited to see realised.

Thank you so much for your time.

ROSS JOYCE: Wow! Thanks, Jordon. That was quite inspiring and hopefully everybody feels equally inspired. We do have a little bit of time for questions for the senator. So if you would like to put your hand up we have a roving microphone. Make yourself known, first question. Yes? Someone’s waving. Still typing up that question. It’s going to be a long one, I think, Jordon.

SENATOR STEELE JOHN: That’s alright. I like a long question. I can’t promise a short answer though, I am a politician, after all. Quite a lot of pressure on this question now. Everyone’s been focussed on it for a very long time…

ROSS JOYCE: I think as Jordon outlined, we’ve had some, let’s call it, excellent wins. But as we all know, they have been really hard fought wins over a long period of time. I think it was only due to Jordon’s determination in the senate which put the pressure back on the current government to ensure that we actually achieved a royal commission. So, I would like to thank you for the work you did on that. I know how much work you did on that because you kept dragging us into it too. But we were proud to be there. And it was a magnificent day to actually hear that get through and be in parliament for all that. Mind you, it was a day of complete lunacy, running around and seeing lots of politicians and putting the pressure on to make sure we could get the ayes, so it was a great one. Whilst we’re waiting for our colleague to the question, we will come back. You finish yours off and we’ll come back over this way, Patrick. First question just over here. Thank you.

KATHY TURNER: Thank you for your speech, I hope it has been taped. I want to share with my sons. How do we galvanise all the good will and effort? That is across Australia, obviously, and we’re all here trying to do our bit, but how do we know what each of us are actually doing?

SENATOR STEELE JOHN: Very good point, Kathy. I think we need to talk to each other more. We like so many groups of people who are struggling against discrimination, are often siloed. My mum used to be a social worker for 20 years in the UK so I’m steeped in that kind of system, theory and thinking. And one of the things she would always say to me, “Jordon, the people in power always practice a simple theory: divide in rule”. And because of the state based nature of the systems we worked in and because of some of the parochial proclivities of the states we live in coming from WA I can tell you about that we siloed ourselves and we need to not to that. We need to talk to each other more and remember we share the same goal and stay united in the pursuit of the goal and with our movement we have now a sense of power and of motion, which is ultimately really good. We have, I think, a growing understanding of the social model of disability, which, of course, opens the door to framing the disability rights movement alongside the women’s rights movement, the movement for LGBTIQ rights, the workers’ rights movement. What we need more and more as much as we can get that shared sense of disability pride, that real sense and belief that not only are we OK, we’re bloody great! And to define those opportunities and those spaces to shout that from the rooftops and celebrate ourselves because the more that we do that, the more that we build an inclusive social capital that is so much of what we need, I think, to be as strong as we possibly can be as a movement. If that makes sense. Pardon me… It’s just a touch of TB. (Laughter).

JACOB MATTHEW: If you could explain what it is for a few minutes about what is the cause.

SENATOR STEELE JOHN: I missed the first bit of that?

JACOB MATTHEW: Have you heard of Communication Access?

PATRICK McGEE: And the gentleman would like to take some time to explain it to you?

SENATOR STEELE JOHN: Yes. I don’t believe that I have heard of Communication Access. I’m just wondering in the interests of time, could I maybe give you my card and you can send me an e mail? And then we can maybe have a bit more of an in depth dialogue because I’d love to hear a bit more.

JACOB MATTHEW: I have a programmed a bit about it.



BEV: Hi. I’m Bev. I would just like to make a comment because I can’t be here this afternoon, but I want people to start thinking that when you’re looking at the word permission, violence, neglect and abuse, but at the royal commission, there is violence, neglect and abuse and I’ve spoken to Canberra but we need to remember when violence occurs, when abuse occurs, when neglect occurs, it occurs within a context. So if the context and the bar is very, very slow, and people look the other way, well that’s when all of those things occur. And so when we talk about, I think, we need to say how did it happen? Why did it happen? And each of us have got and lots of stories.

SENATOR STEELE JOHN: Absolutely. That’s that systemic thinking that I think it’s so important that AFDO brings to the table during the commission. Totally agree.

FRANK HALL BENTICK: My name is Frank Hall-Bentick. I’m with AFDO. I would like to hear your opinion about the Disability Discrimination Act is supposed to be the chief protector of our rights.


FRANK HALL BENTICK: Each state has an equal opportunity act, yet, we have to take out individual complaints and unless you are quite rich you don’t want to go to Federal Court to get a final determination. How can we put more pressure on the Human Rights Commission to actually get a better deal out of an tis discrimination legislation? I mean, it’s a big process to make complaints hoping to achieve an outcome and then not have that outcome apply laterally across any further discrimination against other things.

SENATOR STEELE JOHN: You’re absolutely right. I think we just need to be honest and say the Disability Discrimination Act is not fit for purpose. It is based on a fundamentally wrong idea which is that individual acts of discrimination are the responsibility of the subject of that discrimination to pursue to conclusion. And it doesn’t allow systemic issues to be raised either. I’m very heartened that Alastair McEwin has been appointed to the role of Commissioner, one of the few people who do hearten me. One of his last pieces of work before he was called up into that role was around the need to strengthen the DDA and give it teeth so that actually it allows disabled people to flag an issue we’re experiencing and then have some system take the hell over and do the work of investigating and rectifying that so we don’t have to deal with the impact of the discrimination, process that and then take on the burden of making the bloody thing right. I hope to see a recommendation, not wanting to pre empt the royal commission at all but I hope to see a recommendation around how we might change the Act as part of the recommendations of the royal commission and I would expect that, as long as it passes the pub test in terms of what we need, to be swiftly legislated.

ROSS JOYCE: Next question?

CHRISTIAN: My name is Christian. I would like to ask you, NDIS, if you think the agency, because as you know, one of the big problems is employees and within the agencies who deploy the scheme. And we’ve got all the issues, endemic, and delays. Now, is there anything you think we can do with you? Thank you.

SENATOR STEELE JOHN: Excellent question, Christian. Look, I think you’re bang on. One of the biggest problems with the agency has been not enough disabled people have been employed in the agency. Particularly at high decision making levels, because you speak to the agency and they’ll very proudly tell you, as they have told me, that they’re in fact exceeding, at the moment, their target of 15% employment within the agency. But if you try to break that down into the decision making roles, suddenly it becomes a bit vague and you can’t get any data about what percentage of actual planners identify as disabled people. I would have liked us to have a disabled CEO. To be quite frank. And I think what we need to see is change at the board level. I think we could do with a quota on the board in terms of disability. And I will say I recently had a conversation with the chair, Helen Nugent, about the need for more lived experience, particularly since Rhonda Galbally was also called up into the commission and she informed me very proudly that she believed that 70 to 80% of the board had lived experience. And I thought, well, unless you’ve changed the board overnight I don’t think that’s quite true and I queried that a little bit deeper level and she said yes, Senator, 70 to 80% of our board members have a friend or family member that is disabled and that moment you go, “Oh god! This is so much worse than it looks”. That worries me, quite frankly, Christian, there is not even that baseline understanding of what I say when we need people with lived experience. We need to see that change there too. Also, to be quite frank, would take a board entirely of non disabled people if nobody in there was from a corporate, insurance based background. Because that’s one of the problems as well. We have a bunch of people running those boards who backgrounds are hospitality, banking, finance, insurance, McKenzie, PricewaterhouseCoopers, the pilot fish that swim alongside the Liberals when they’re in government, quite frankly. They’re all in there now and it is part and parcel of that corporatised shift that we’ve seen and that needs to be corrected urgently. Otherwise we won’t get the scheme that we need.

ROSS JOYCE: Another question?

KATE BERNAT: I’ve got the mic. My name is Kate Bernat from Access Disability Inclusion and I emphasise the word “inclusion” and lately I’ve noticed an increase number of exclusions from schools for people, or children with autism. Is there any likelihood of teachers having increased learning around these issues to having inclusion for all?

SENATOR STEELE JOHN: Great question. I think we need to be really clear here and state that which we know is true, and that is simply this: Australia has a segregated education system when it comes to disability. A publicly funded and segregated system and we also retain a segregated employment system. In 2019, right now. That is state government policy in every state other than Queensland. And that’s not OK. It’s in breach of our international obligations under the CRPD. And to be quite frank, if we were practising publicly written segregation, in relation to any other community, there would be outrage. So, what we need to do, first and foremost, is assert the right of every student to be educated alongside their peers. End of story. Secondly, we need to assert that education in this country for disabled kids or otherwise needs to be fundamentally changed. Because I share the understanding that many people are worried about what would happen to their child, you know, in a situation where you’re put into a poorly funded mainstream public school. And so, we’ve got to change the way that we do education funding in Australia. We also have to change the way that we do teacher training in Australia, to bring that inclusion and that human rights basis to the centre of everything we do. And the centre of the curriculums. But also, it’s really clear that we need to be (sighs) brutally honest about the fact that no amount of funding or policy change will actually see this transformation, segregation, to equality and inclusion without also the cultural shift. Because we’ve had 40 years of academic research, speaking to the absolute benefit of inclusion and education. We know countries around the world have done it for decades and succeeded. And yet, we ain’t not just done it, we’ve gone back wards and that’s because there is a corrosive, discriminatory belief, just as there has been and still is those beliefs in relation to race and gender, that the inclusion of disabled kids in the class room alongside non disabled kids will lead to negative outcomes for non disabled kids because we’re some contaminated entity that will hold the normal kids back, that will be too difficult to teach and disruptive and those things. We need to confront that as the discriminatory bias it and clearly say, it doesn’t matter how over worked you are or the context, treating children that way is not OK and shouldn’t be publicly funded or supported.

ROSS JOYCE: We have…

SANGEETA SHARMA: I am a parent and carer of a daughter with a disability who is 18 and doing her last year, thank god, at school. My question is in Brisbane you have the royal commission sitting in public feedback and conversation, when will there be one in Melbourne or Victoria.

SENATOR STEELE JOHN: A hearing or public community forum.

SANGEETA SHARMA: Yes, one of those.

SENATOR STEELE JOHN: There has been meetings in Melbourne for sector specific kind of gatherings that I know AFDO have been present at. But one of my concerns with the speed at which this commission is progressing is that we have not yet had the time for those broader community meetings that we saw in the institutional responses royal commission, for instance. And we need that. Because unless the emotional supports are in place, unless the legal supports are in place, unless the conflict of interest approaches are clarified, unless the community understands the context and the process it can’t succeed. And I really do succeed, we have been campaigning for this since 2013, ’14. We’ve got it now. It’s well funded. Great! The terms of reference are broadly good. Fantastic. There ain’t no bloody need to rush this. We need to be thorough and work with community in such a way that people feel supported to give evidence, not rushed to give the answers that people presume they’re already going to give so that they can get their recommendations in, all under budget and ScoMo will say thank you very much, goodnight. It is not the royal commission we need. That’s why myself and other advocates have publicly said there shouldn’t be a hearing in November is as currently planned in Townsville, we should hold off until next year, get the processes in place and then go from there.

PATRICK McGEE: One last question and come back to this gentleman.

JACOB MATTHEW: Hello, everyone. My name is Jacob Matthew and I’m pleased to have the opportunity to attend the conference. As a person with a communication disability it is very important to me communication as a human rights is part of the conversation today. I am from the Communication and Inclusion Resource Centre of Scope, where I work as a communication access consultant. The commission is to enable each other to support them to live as an equal and empowered citizen through all our services. One way is through the award of the communication access symbol. It highlights the access needs of people with communication disability. Part of what we do is to provide communication access training for businesses and organisations. To just get an understanding of the room, how many of you have heard of Communication Access? (Show of hands). Well, Communication Access occurs when people are respectful and responsive to a person with a communication difficult and with strategies and resources are used to support successful communication. It means when a person goes into an organisation they know that the staff will speak to them as a normal adult and they can get their messages across successfully and they will not get spoken down as a child which can feel very degrading. Did you know, one in eight Australians may have a communication disability at some time in their life? This is why I believe that communication access should be a part of this conversation today.

SENATOR STEELE JOHN: Absolutely. I totally agree. And I would also add that as part of that communication’s conversation, we need to change the way, or maybe see clearly again, language and its role in building culture and communities. You know, I experience this quite often with the deaf community. There’s this real, but also, you know, other parts of our community, there’s a real itch in so many people to get in there and bloody cure people before it gets too urrrgh, you know? And that’s the medical term. And in that rush to cure, we entrench that idea that you’re broken in the first place when what we really need to be doing is making language and communication and connection the priority and supporting that in all the very many ways that people approach that question. And we need to keep that in the centre of what we do. So sick of a language set at the federal level and other spaces that is so cold and clinical when it comes to disability and it uses these words ad nauseam like “choice and control” and all these buzz words that have crept in. The participant is at the centre of everything we do. Bugger off! We need to rediscover and re enliven the language set that we use collectively that is based in human rights and is asserted in everything we do and a proud community. We’ve swum for so many years in that kind of bilge water of tacky phrases and, you know, cold cups of tea at 12 o’clock in an afternoon in a bloody thing in the middle of the week. All of that stuff, we need to clear away those cobwebs and make sure when we speak, we speak in the most accessible and yet electrifying ways possible. Because that’s the way that words and acts have impact. And ultimately, create change. With that, I think we’ve run out of time? Bugger!

Well, I’ll be around for a couple of hours. So come and chew me ear off. So lovely to be with you.

Thank you so much.

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