Attitudes - about disability - episode 4

Angel 00:02

Welcome to the Attitudes podcast. This podcast is the brainchild of Attitude Foundation and Northcott to chat about attitudes about disability. In 2021, the University of Melbourne published a nationwide survey on Australia's attitudes on disability, which will be the focal point of our season one.

I'm your host, Angel Dixon. I'm a person with disability. I dedicate my time to furthering the inclusion of people with disability. I'm a model and the former CEO of Attitude Foundation. In an effort to bring life to the numbers in the survey, each week I'll be joined by current and former board members and one friend of Attitude Foundation to discuss one of the survey's findings.

Today, I'm joined by Todd Winther and we'll be discussing the topic that 63% of people agreed that people with disability are easy to take advantage of or exploit. Welcome, Todd.

Todd 00:53

My name is Todd Winter, I am coming to you today, not too far from New Angel, I am in Brisbane and I am on Yuggera land, so I would like to pay my respects to Indigenous elders past, present and emerging on this land that I recognised was not ceded.

Angel 01:13

And Todd, can you give us a little bit of your, your blurb? I mean, you have quite a long bio that I'd love for you to share some of the interesting things you've been part of.

Todd 01:24

First and foremost, I am a political academic. I've had a background in teaching a variety of political subjects, both in disability policy, but also in public policy and multiple universities in Queensland.

I've worked for a number of NDIS providers, particularly in the accommodation space with providing expertise and support of helping people with severe physical disabilities to receive the funding that they're entitled to outside of the NDIS.

Todd 02:06

But my primary role at the moment is as an NDIS consultant and subject matter specialist. So I help training providers to demonstrate what is best practice and to keep them up to date with the latest news and trends and the political culture of the NDIS.

I'm the self-appointed political nerd of a very smart, very bright, very talented team that I work with.

Angel 02:39

That's quite an intro, and I love your self-appointed title there. I have to say I'm really excited about the potential for our conversation today. You've chosen a topic from the Attitude Matters Survey that is something we haven't addressed yet in these chats, and the topic you've chosen is 63% of people agreed that people with disability are easier to take advantage of or exploit.

Angel 03:08

There are so many things that you have been part of that you continue to be part of that I know put you in the right place to discuss this particular point. I'd love to start off with just your viewpoint of this topic.

Todd 03:28

Well, the reason that I chose this topic primarily because it is super topical, we're recording this episode just in the few weeks after the Royal Commission report on the neglect exploitation and mistreatment of people with disabilities.

Todd 03:50

It's such a long title that no doubt I've got some of the adjectives mixed up, but you've got the general idea. We've had an entire Royal Commission about this very topic. We've had a few weeks to, well, I've had a few weeks to digest the bits of the report that I'm interested in.

Todd 04:14

And as a person with a disability who has a profound physical disability of plastic quadriplegic cerebral palsy it made, confronting reading and a lot of the reasons why was confronting reading was it highlighted the ways that people with disabilities can be exploited. So it's a really fascinating topic that I'm looking forward to discussing with you today.

Angel 04:44

So let's dive into that report and let's talk about all those ways that people with disability can be exploited.

Todd 04:50

Well, when people tend to think of exploitation, they go to the endth degree about maybe physical harm or compromising people's safety, but let's just peel it back. The key thing of the Royal Commission report is, in fact, that some of the reasons why people become exploited is because they don't know what their rights are.

Todd 05:18

And that's my passion in all reasonable efforts, why I became a political animal, because I acknowledged that as a person with a disability, I didn't have access to rights. And as a student of political history, my favorite political quote is by former President Lyndon Johnson, and he says, power is where power goes.

So I wanted to be where the power was because I'm at a disadvantage being a person with a disability. And what the report actually said is, if people with disabilities don't know what their rights are, don't know where the power is, do not have the opportunity, whether it be through their impairment, their circumstances, the lack of support in their life, and other challenges.

Todd 06:19

If they don't have the opportunity to know where their power is, they're not going to know how to access their rights. And if they don't know how to access their rights, then climate is ripe for opportunities of exploitation.

Angel 06:36

I could sit and listen to you for hours, Todd. I wonder if we could break that down further to the daily instances and what not having access to those rights means. For even you, do you have any personal stories that you can draw on?

Todd 06:55

Yes, there are there are personal stories every single day. There are literally hundreds of stories because that definitely we teach little kids about what disability is. And most people define my disability as being powered, my powered wheelchair and my inability to walk. But the social model of disability teaches us that the disability is not just about my impairment. It's about society's attitude towards impairment. One of the reasons why the Attitude Foundation exists is because we want to operate in the social model.

Todd 07:42

And so if the problem is with the society, what does that say about disability? Disability isn't about the fact that I can't walk. Disability is about the lack of choice I have in my life. So some very basic examples are I don't get to choose when I get up in the morning. I don't choose when I eat. I don't choose when I shower. I don't choose when I dress. People, both who have disabilities and don't have disabilities, fail to recognise that we make hundreds of choices a day.

Todd 08:24

The majority of which aren't mine. And I'm very lucky on the scale of disability. I can articulate these things. I have the intelligence to articulate these things. I have a stupendously great support network with a family who loves me and who cares for me. And I have great friends. But other people with disabilities haven't got those opportunities. And when they haven't got those support networks and when they haven't got those opportunities, the lack of choice is amplified to the end of the grade to the point where if we're saying disability is a lack of choice, and you're already limited by the choices that you have, and they're limited even further, you're going to grab every opportunity to make a choice that you can.

And often at times that can be in very vulnerable places or very vulnerable situations.

Angel 09:32

I would love to talk a bit about how did you came to this place of understanding your own rights?

Todd 09:39

I have two very fierce advocates, my parents, who didn't accept the conventional traditional diagnosis of my cerebral palsy. I'm quoting my mother here when I say at eight months old, the doctor told my parents to try and have another baby and throw me in an institution and called me a vegetable.

Todd 10:04

And if I had another set of parents, I wouldn't be here talking to you today. So just by defying that convention by saying, we want to take our child home anyway. And by the fact that they're both educators, my dad was a high school principal and a teacher for 40 years. My mom was a teacher for, you know, 30 years. So they taught me the value of social justice, the value for advocating for yourself. For example, one of the first lessons I remember them teaching me was, you are disabled, you are going to need a lot of help.

Todd 10:49

So one, you need to know how to articulate that help that you need. But two, you need to be polite. You need to be courteous. You need to be helpful because if you're demeaning or rude to another person when you're asking them for help, they're not going to want to help you and you're going to be in trouble because then you want to get the help that you need.

Angel 11:17

Which is an unfortunate conundrum for a lot of people with disability. In fact, I only spoke about this with Emma, our other board member in our last chat about how people with disability take so many hits every day, particularly when we're talking about the Medical Model of disability and the way that we're perceived predominantly.

And so every day when we encounter these barriers and these perceptions, you get angry. You get uncomfortable, you get angry, you're frustrated that you have to do this all day, every day, every minute.

And so to try and stay as poised and calm and respond to people politely is a challenge in itself.

Todd 12:06

If you talk to my wife, she might disagree that I respond politely and calmly, but I'm very feisty when I want to be, particularly if the issues concerned are political because I know what it's like to not have a voice.

Todd 12:26

I didn't talk until I was almost five, and even the little bits that I remember, I remember being trapped in my body and not being able to express my thoughts and feelings. And even now, I remember that as a terrible, frustrating experience.

Todd 12:48

So when I am silenced, I tend to go the other way and tend to roar like a lion and say, you know, you think I'm not going to say something? Well, I'll show you type of thing.

Angel 13:02

Todd, even now, while I'm listening to you, recount that story and the way you felt being in your body, I'm thinking about this podcast being consumed by people with that predominant Medical Model narrative.

And I wonder if you could speak more to how you felt and why you felt that way because I 100% know that you're not coming at it from a medical model perspective.

Todd 13:29

No. No. Society is and history defines us as people with disabilities, that the problem is us. That's what the Medical Model says. So even if you don't think that the problem is you, you've got a whole bunch of people in society, many of them don't know the first thing about disability, who come up to you in public and say, oh, it's good that you're doing the grocery shopping, for example, or you're going to the post office.

Todd 14:11

And that lack of expectation, what former disability commissioner and founder, I think of the Attitude Foundation, Graham Innes calls the soft burden of low expectations, you can't actually feel worthy if everybody else in society is saying, you are different, you are less than, because you have an impairment.

Todd 14:40

So it's only natural that you're going to take on this ableism and internalize it. So it's a battle in itself when society defines you as a human, it's the very thing that separates you from the majority of society. And that separation is viewed as a positive or worthy characteristic. In fact, it's viewed as the opposite, something to fix, something to remedy, something that should be repaired.

Angel 15:18

And isn't that saying something that even as a child younger than five years old, you had taken that on to that level? That's, yeah, that speaks exactly to, I guess, the problem, doesn't it?

Todd 15:34

Yeah, it's biological. I mean, you know, survival of the fittest takes out the weakest of the herd and, you know, the weakest as easily perceived by society of those who are physically different, even if we're conscious of those thoughts or not.

Angel 15:59

And so, Todd, going back to this statistic, I'll remind everyone, 63% of people agreed that people with disability are easier to take advantage of or exploit. I'd love to talk to you about the NDIS and your involvement in, I guess, appropriate funding. You mentioned accommodation earlier, that has a huge role to play in choice and control. All of these things are so intertwined. What can you say about all that?

Todd 16:32

The common misconception, particularly for those who don't have disabilities, is that the NDIS is meant to solve all of the problems related to the disability sector, is meant to take us beyond society, to take us on an equal footing and help us to project beyond.

That might have been the initial theory, but it was never going to be that way in practice. When the NDIS works well, that allows me and other people to use that as funding, to have equity and opportunity.

Todd 17:14

I choose those words carefully because I don't believe in equality, because if I have access to the same resources, with a physical disability, equality is saying that everybody has the right to equal opportunity. Equal opportunities are going to work for me because of the environment around me. I need equity, so I need extra help to get the same opportunities as everyone. So the NDIS is an equity program. It doesn't take us beyond where we should be.

Todd 17:52

The NDIS allows us to function daily, so we should have already been there in the first place. Everybody treats the NDIS as revolutionary, and in many ways it is, particularly where we come from, segregation, isolation, services for us, not with us, but the NDIS has only equaled the playing field.

Todd 18:20

There is so much more to do. Now hopefully the majority of us have access to basic services, and that's a big if. What's next is being able to put forward a contribution now that we have the same equity as everybody else.

Todd 18:41

I mean, before the NDIS, many people I know with physical disabilities didn't shower every day. They only showered twice a week, and we've had to fight to shower every day. And even some of the people who are getting the funding they need for whatever reason are still fighting these things to get what every other person with a disability takes for granted.

The NDIS levels the playing field. It doesn't mean the playing field is over. If it's not finished, it will never be finished.

Angel 19:23

And so when we're thinking of exploitation and taking advantage and the Royal Commission and the NDIS, what are some of those stories? What are some of those examples?

Todd 19:34

So the Royal Commission report basically says that we're still making up lost ground because of the culture of segregation and isolation. The challenge is we've got these legal frameworks in place like the Disability Discrimination Act, like parts of the NDIS, parts that are meant to oversee how those services are provided, parts that are designed to prevent discrimination.

Todd 20:11

But unfortunately, many people with disabilities don't know that these tools exist or when they're put into development, those frameworks require skills and expertise to navigate around. So if you have a framework but you don't know how to use a framework, what good is it?

Todd 20:38

So basically what the Royal Commission was saying is yes, we've got these frameworks in place from the outside point of view. So we're saying we're doing the right things. But when the most vulnerable people can't access their rights because either they don't know they exist or they're too complex to enable, then we have a problem and it's sort of a second level problem. We've sorted in quotation marks the first problem. The first step is to have the rights. The second step is what are you actually going to do with those rights?

Angel 21:24

It's been really challenging over the last three years since the idea of the Royal Commission came up and since the hearings and the report and now the aftermath. The unfortunate thing that can happen is that we only see these barriers. We only hear about the severe experiences of people and it can be quite a downer. So I'd love to hear your panacea. I'd love to hear what your utopia is for disability. How do we solve this problem, Todd?

Todd 21:56

I expected you would you would predict my answer and saying there's no panacea but the next step is if magical word co-design and lots of people actually throw it around and don't actually understand what the concept of co-design is.

Todd 22:20

Many people think that co-design is providing feedback for a quality disability service. That's not co-design, that's good standard disability practice. Co-design is having people with disabilities around the decision-making table saying this is our future for the next three to five years. This is how we change the culture of society because it's not enough for the disability sector to know what the NDIS is, to know the issues of the Royal Commission. Where's the public been with this?

Todd 23:08

Why has the Prime Minister made a statement saying that this Royal Commission is awful? We've had Bill Shorten, we've had Amanda Richworth as the responsible Minister to make a statement and those statements were valid and very good but it's not enough to teach other people with disability. We have to change the culture around the values that we place on people with disabilities. That's the next step and that's actually a much tougher job than getting the NDIS in place. And there's this song in Hamilton that says why do you assume you are the smartest person in the room? And that to me and that to my colleague is the non-disabled community telling us as people with disabilities that we're not the smartest person in the room.

Todd 24:12

So my goal, my mission, my life's work is two-fold. Power is where power goes so you've got to work out where the power is. The second thing is I want people with disabilities to be the smartest person in the room whether that's at their NDIS reassessment meeting, whether that's at home, whether that's at a corporate board level, whether that's at the cabinet table, whether that's even at the lodge.

Todd 24:46

We've got to have power but we've got to have the expertise on how we use that power. So we've got to stop thinking about people with disabilities just being in the room and that's enough. We've got to make sure we're the smartest people in the room that we can advocate for them and advocate for ourselves.

Todd 25:11

One of the good points about how the NDIS instruction besides its many structural flaws that we're still working through is that we place the individual goals as the primary motivation for how we operate as disability services. That's a very deliberate, that's a very deliberate aim and if we go back to the Social Model of what makes every person different, what makes each individual different as well as their disability different.

Todd 25:50

So who knows what the smartest person in the room looks like for it might be having the ability to communicate what they want and what they need. It might be getting extra support for supported decision making. It might be opportunities for them to go out in the community. For many people with disability it's going to vary according to what they want them, what they need primarily, but also their level of impairment.

Todd 26:22

So we've got to individualize it as well and say what do you want out of life, whether that's be, you know, be a powerful political advocate or whether it's to communicate effectively, the person needs to be asked first. That's the key thing.

Angel 26:43

Yes, Todd, I think that you have just summed everything up in a nice little neat package there right at the end. So I think that's a natural place to finish. I really want to thank you for a really rich conversation today. It's a topic that I've really wanted to discuss with someone just like you who has the expertise and the lived experience and I feel very privileged to have had it with you today. So thank you.

Todd 27:09

No worries, thank you for having me.

Angel 27:12

Thanks for joining us. This has been the Attitudes podcast. If you'd like to learn more about the survey, visit the University of Melbourne website or head to the Attitude Foundation website for more information on us.

Angel 27:23

This podcast wouldn't have been possible without Matt Field from the Attitude Foundation and Alex Varley from Northcott, hosted by me, Angel Dixon, produced by Lucy Griffin and edited by Simon McCulloch and Evan Munro-Smith.