Disability with Tricia Malowney OAM

Podcast Transcript

Nathan Luker: [00:00:00] In today’s conversation, I’m joined by Trish Malowney, who is the Chief Accessibility Advocate for the Victorian Department of Transport. Trish, where do I start? You’ve had a long and interesting career. You started as a research officer for Victoria Police. You’ve held numerous leadership and advocacy positions. You’ve been a consultant. You’ve sat on boards. You’ve essentially spent your entire career fighting for the rights of people with disability. And it’s no surprise that these efforts were recently recognised with an Order of Australia. It’s a privilege to welcome you to the show.

Trish Malowney: [00:00:39] Hi. How are you, Nathan? Nice to be here.

Nathan Luker: [00:00:42] Thanks, Trish. Let’s start at the beginning. What led you to being such a passionate advocate for the rights of people with disability?

Trish Malowney: [00:00:51] Well, let me tell you that I contracted polio at the age of four months in 1954, and my parents were told “put this one in a home, go away and have more children”. They had eight more children after me, but they didn’t put me in a home. And I was talking about this with mom the other night and she said, “I didn’t know what I was doing.” But she said “I said to the doctor, will she be alright? And he said, no, mother, she won’t be.” And she said, “I was a young 24 year old and I just thought, well, that’s not going to happen”. So I was really fortunate in that I had parents who had the same inspirations and objectives for me as they had for the rest of my family. Get an education, get a job, and then leave home. And that’s what I did. And I’ve always worked in mainstream employment, and I’ve always been fairly lucky that being one of ten, I’m quite pushy. So I’ve been able to get the jobs that I needed to get at a time when I needed to get them. And it was only later on that I found out not all people with disabilities have that right or have that ability to push their way through. So that’s why I’m so passionate about what I’m doing and when I’m doing it.

Nathan Luker: [00:02:05] It’s remarkable. You write about workforce participation, obviously, and it’s quite alarming the statistics, and it’s remained quite stable. 54% or roughly around 54% of those with disability have participated in the workforce. But that’s compared to 83 or above 83% for those without a disability. Quite an alarming statistic, and that’s a unique story that you’ve had. It shows the need for strong leaders and those who can make a difference through words and actions to give hope. And the ripple effect of that decision has been remarkable. And I know when we spoke before this podcast, you credited your journey and the impact that you’ve been able to make to hundreds of others and the whole community facing that starting point is so important.

Trish Malowney: [00:02:56] It certainly is. And so it’s not me. There’s a lot of us doing this work and it is building on the work that’s gone on for years. So I always like to acknowledge those that have paved the way for us to get to where we are today. And that’s including our allies. And there’s been some fantastic warriors in the past who have chained themselves to the front of trams, who have made sure that the politicians have heard our voices and things have changed over the years. There have been outstanding strides forward, but we’re still not there yet. And it comes back to the matter of employment. And I think we keep getting told, well, there’s a course you can do. What they don’t understand is we don’t need a course. We just need a job. We’re already work-ready. Let’s just get on with it and stop pussyfooting around with this “oh, well, we’d like to give you a job, but it’s going to cost us too much.” No, it’s not. If you ask us, then the adjustments we need are minor. I need a flat entrance to a building, and I need an accessible bathroom. It’s no big deal these days, surely.

Nathan Luker: [00:04:07] Thanks, Trish. I think that speaks to Disability Pride Month as well, which has recently passed. And for those listening who are not familiar with their mission, it’s broken down in three ways to, change the way people think about and define disability, to break down and end the internalised shame among people with disabilities and to promote the belief in society that disability is a natural and beautiful part of human diversity in which people living with disabilities can take pride. Trish, how do you feel? We’ve adjusted and adopted this mission. How are we tracking?

Trish Malowney: [00:04:47] Sure. And look, there’s been a lot of conversation going on this month about what disability pride actually means. So it’s an American concept because it’s the 32nd anniversary of the DDA Act in America. But we’ve picked it up here because we actually have started to think about what does disability pride mean? Now, I often start my conversations with I’m a proud woman with a disability. And that’s just to show people there’s no shame for me in having a disability. It’s just part of who I am. Get over it. You know, I don’t have a problem with it. I’m often stopped in the street by people who want to pray for me, and they get a little bit upset when I tell them that it would ruin my career if they cured my disability. It’s part of who I am. Some people have come back and said, “Well, do you expect me to be proud because I don’t walk or proud because I’m in pain?” That’s not what it’s about. It’s about being proud of our achievements, despite of or because of our disabilities. So we’re still at the stage where we have to scan the room when we come into a room to look for the safe faces. So there are people who will talk to us. There are people who won’t. I don’t give people the opportunity to not talk to me. I’ll go up and talk to anybody, and if they’re not receptive, I’ll move on to the next person. But I’ve had people say, “Well, it’s really hard for me. I come into a room and nobody talks to me.” I just go up and talk to everybody. But it’s part of what I need to do is to show others that there is no shame. So I wear dresses so that people can see my calipers when I speak in public.

Nathan Luker: [00:06:40] Thanks for sharing that, Trish. We spoke about that before the show and I think it takes incredible courage to share it here. I’d like to double-tap on the friendly faces point. Let’s go a little bit deeper. What can people do who don’t have the lived experience? You know, generally people are good people, but many might be unsure, nervous, fearful in what to do in the moment to ensure that they’re a friendly face and not simply a cliche. What can you share?

Trish Malowney: [00:07:11] There’s certainly a lot of fear about offending somebody with a disability, saying fear of saying the wrong thing or being paternalistic or patronising. That’s something that I struggle with. People mean well, but don’t come and pat me on the head. I don’t need your paternalism. I need to need somebody to have a conversation with me. Don’t talk down to me. I’m probably better educated than anybody else in the room. But people tend to baby talk. And what I look for is somebody who will just smile at me the same way they smile at somebody else. So they don’t look away. So some people will do that and it’s an embarrassment thing and it’s not deliberate, but it’s actually quite soul-destroying. I went to a business breakfast before COVID and I was invited because I run a successful business as well as having my day job. And one of the fellows there said to me, “Why are you here?” And I said, “Well, I run a successful business.” And he said to me, “Really?” And I thought, have you asked that of any other woman in the room? Because it wasn’t about gender. It was obviously about disability. So it’s just an assumption by people that we will be in a certain category. When I tell people that I run a successful business, they say I’ve had people say, because not everybody does this. “But don’t you want a pension?” Well, no, because who wants to live in poverty? So there’s just so many assumptions out there. And we’re we’ve got an underlying ableism in our society about what people with disabilities can and can’t do and who people with disabilities are and aren’t. And there’s invisible disabilities, too, that we need to address as well because it’s okay for me. You can see I’m on calipers and crutches, you can see I have a disability, but others might be doing it tougher than me.

Nathan Luker: [00:09:18] It’s interesting you mentioned ableism. We recently did a podcast on civility and there’s a common thread there at times where people are unaware they’re doing it. And having been involved in a lot of whistleblower reports in the past, sometimes it’s the person thinking they’re providing a compliment like “you don’t look disabled” or something along those lines and it’s absolutely an example of ableism.

Trish Malowney: [00:09:48] It’s quite funny because in one of my many careers I was a stand-up comedian and I did my first gig for ages a couple of months ago, and it was a group of women who were talking about body image. So there was a 20 year old, a 30 year old, a 40 year old, 50 year old. I was in the sixties group and then there was seventies and I was the only one who had a positive body image. It was really interesting because I’m quite happy with who I am. I know that I don’t, I never have and never will look like the sexiest girl on earth. My husband likes me so that’s all right. It’s about sort of what society sees as what’s an acceptable body shape. And mine’s certainly not. And so I came out and said, “Look, I’m Tricia. I’m 68. I actually am quite happy with who I am. I’m quite happy with the body I’ve got. It is the body I’ve got. If other people don’t like it, they can get over it. It doesn’t matter to me what other people think.” Now, that’s taken a bit of a journey to get to that stage. But I think there’s more and more younger women in particular who are coming out and saying, “you know, yes, I’ve only got one leg. It doesn’t change who I am or yes, I know that I have facial difference, but that’s okay. I’m happy with who I am. And it really doesn’t matter that you think that that’s not acceptable. It’s acceptable to me.”

Nathan Luker: [00:11:26] Really impactful discussion you and I had before this podcast, the lead up where we were discussing tips or comments on what we could talk about today, about helping people welcome those into the workforce, people with disability. I loved your comment. You said “it’s pretty bloody common sense, give them access and treat them like anyone else. There’s my tip.” It’s something that’s stayed with me absolutely since our discussion of how simple the answer seems to be and how difficult it is in practice. And having this discussion today is really demonstrating that driving at home, the experience, I think, commonly read that some of the barriers that a person with disability faces is other people’s perceptions of what it’s like to live with a disability. And that’s a hard thing to get right and still causing issues. Obviously in that conversation we had. You also told me that you had a strong belief that every government department should employ at least one person with a disability. Why do you have that belief and what fresh perspectives do you think that strategy would take and deliver?

Trish Malowney: [00:12:35] And I really think that it needs a focal point. So I’m very lucky that I’m Chief Accessibility Advocate to the Department of Transport in Victoria. So there are lots of people with disabilities working in Victorian Government agencies. They have the Enablers Network, which is funded to support each other. So it’s a peer support group. So they do training on public speaking and how to support each other, how to go for promotion, how to ensure they get into training programs. So they do that. Whereas my role is a little bit different in that I’m here for everybody to run things past me. And I think that if we had somebody like me in health, justice, education, housing, it would just be somewhere safe where people could say the wrong thing without fear. Because, you know, there’s nothing anybody can say to me that I haven’t heard before and I can guide them on the right way. Having said that, not everybody with a disability has the same views. So there is we don’t all share the same ideas, but I think it’s the diversity. I mean, I’d actually like to see every government minister have at least one person with a disability in his office because there is nothing. There is no part of society that does not impact on disability.

Nathan Luker: [00:14:00] Has that ever been considered, discussed in your experience, is that…

Trish Malowney: [00:14:05] I’m discussing it quite vigorously with everybody I meet. I’ve certainly suggested it at various forums, but I really think that we haven’t got a mature society yet where we think that people with disabilities can be an adviser and I’m saying that that’s not quite true because I know there are advisors with disabilities in a few politicians office. I just think that if you’re having a conversation about housing, you need to have people with disabilities in the room.

Nathan Luker: [00:14:40] Exactly. And that’s one of the biggest barriers that people’s perceptions of what it’s like to live with disability and the statistics are in short horrendous. And I have been for some time, obviously brought back from the Face the Facts report in 2014 by the Human Rights Commission through to the current Royal Commission. Evidence of violence and abuse that is occurring throughout Australia to people with disabilities, absolutely shocking and deeply troubling. Headline statistics  50% of people with a disability have experienced violence, while 40% of adults have experienced sexual harassment. It just seems like the absolute minimum standard or the minimum approach is to have a representative at each, in each department to advise on what an accessible and inclusive workplace culture looks like.

Trish Malowney: [00:15:28] And I’ve done a fair bit of work in the family violence space, supporting women with disabilities to leave violence. And there’s some terrific work going on. But you know, it’s not the so the Family Violence Act, for example, in Victoria includes people with disabilities within the Act. In other states that’s not so prominent, but there’s violence from partners, there’s violence from family members, there’s violence from coworkers, there’s violence from employers as well. So and we’ve had the cases where people have been systemically abused or systematically abused over the years because they’re in segregated settings. So they’re not in the public eye so they have nowhere to go to tell anybody what’s happening. So if you’re living in a group home and I mean, things are better, I think with the changes to the NDIS where people can change providers if they need to. But the biggest problem we have is that people with disabilities aren’t believed. So the partner will say, “well, you know, she’s got a disability, what do you expect?” Or she’s mental, you know, so that if she goes to the police she won’t be believed. And that’s really hard. So how do you get people to understand that somebody is not going to report violence just to be frivolous? Because it’s a terrible, terrible thing to have to do. But, you know, there’s some really good people doing good work in this space, but it’s hard work. One of the problems we have is women who don’t speak. How do you report a crime when you don’t speak or how do you report a crime when your way to communication is the perpetrator of the violence against you? I think people are going to be really shocked by the outcomes of the Royal Commission. My biggest problem is I’m not shocked anymore, which is really hard. And we also have the issue of women who have their children removed as a form of family violence. So, for example, I support a couple of women in this space who have intellectual disabilities, who’ve been in a relationship that’s turned violent. And the partner says to them, “If you leave me, I’ll report you to child protection.” She leaves. He reports her child protection and the first response is to remove the children because they might be in danger. And then there’s the battles, then starts to get the kids back. And I’m not blaming child protection because that’s their mandate, is to protect the kids. But they’re looking at it the wrong way as far as I’m concerned, it should be the perpetrator of the violence who gets looked at.

Nathan Luker: [00:18:29] I think an amazing point that sometimes gets overlooked, which is mental health and mental illness is one of the greatest causes of disability and may lend itself to why there is the incorrect perception that there will be vexatious reporting or false reporting or that believability that you mentioned that does contribute to that situation. And it needs to be known that obviously physical disability, mental disability causes complexity in the way that the speaker programs work and who they speak up to and how successful they can be.

Trish Malowney: [00:19:06] And it really is that’s again, the ableism with how we look at people who have mental illness. If you scratch any person with a physical disability, you’ll find mental health issues as well. So I’m on anti-anxiety tablets all the time and that’s because it’s hard having a disability, actually. So there’s a lot of us who are in that space and we still see mental health as dangerous and it’s not. It’s just another facet of disability. So the disability for us, disability isn’t about the diagnosis, it’s about the barriers that we face from society in being able to take our equal. Right. So if you say to somebody schizophrenia, there’s automatic bells and whistles going off because you hear of the odd case where somebody has done something really dangerous. Most schizophrenics that I know are working, are on medication, are living a productive life. I’m more worried about people who have got drug and alcohol affected cognitive impairment, so acquired brain injury, Because they often don’t recognise that they have a disability. So there’s that as well. It’s a very complex world, this disability world.

Nathan Luker: [00:20:33] Moving into workplaces, as you mentioned, and those who are employed. We know that the reporting or the lack thereof contributes. We know that’s a contributing factor for those who have access to safe trauma-informed reporting solutions or systems at a workplace or in a community group home, as you mentioned. And how can we support people with a disability to report wrongdoing? What are we doing right? What are we doing wrong and what do we need to do more of?

Trish Malowney: [00:21:01] Look, in Victoria we had the Disability Services Commissioner before the introduction of the NDIS, which was really great because it had an education program associated with it which said it’s okay to complain because people with disabilities who are institutionalised have been socialised that saying no is a problem, that you’ll lose access to your services. And so we’ve changed it now. So now we have the NDIS Quality and Safeguards Commissioner. I don’t think it’s as well known as the previous one was. We’ve got a new commissioner now and I’m hoping that that will change and I know that one thing that they’re doing is they’re employing some really great people with disabilities in senior positions. So there’s Sam Jenkinson in Western Australia, for example, who I knew when she lived in Victoria, who was a really powerful woman who can, who has a disability and who can really drive the changes forward. So and there are other people too, that we actually need to have people with disabilities in the places of authority so people feel safe. One of the things I find is that when people are reporting abuse, they will say things when other people are in the room, but as soon as it’s only me in the room, they’ll tell me a lot more because I’m a safe place to tell the stories too. Because if you don’t have a disability, you might be one of the perpetrators. And this is from a place of distrust among some people with disabilities. And I first actually got into this by being on trains when I was using electric scooter to get to and from work. And people would come up and start telling me horrendous things on the train. And I didn’t know what to do with it. So that’s when I started to do what I do, because I thought, well, I’ve got to do something because I didn’t have a clue this was happening. And why would I? I’m living this great life.

Nathan Luker: [00:23:18] It’s interesting. The utopia world that is would be that everyone has access in an inclusive workplace to a group that identify with or a person with disability to speak to, to feel safe, to assist them, to speak up, and to really create that psychologically safe workplace. We speak a lot about creating the conditions of listening, and it really resonated what you just said there about the difference when you’re in the room and someone else is in the room and the level of transparency and the quality of information that’s shared. We speak that a lot about the gaps someone has to cross when it’s just to focus on speaking up because there’s still the unknown. The person still needs to take a major leap of trust, and that trust generally hasn’t been earned. It’s just requested. Creating the conditions for listening and psychological safety is imperative, irrespective of the size of business that you’re at. So help me paint a picture of what an accessible, inclusive workplace looks like from the point of view with someone with a disability, knowing full well that not everyone has the size and the reach of the Victorian Department of Transport, for example, the smaller middle-sized businesses. What does good look like? What does great look like? Let’s say, what does remarkable look like? It’s pride month. Let’s reach the stars – what’s the map we can give people?

Trish Malowney: [00:24:53] It’s really interesting because some of the smaller organisations do it really well because they just employ people. And so here we are. Here’s a job. Get on with it. You know, and what do you need to do it? And I think that’s the first question to ask. What do you need to be able to do your job? That’s the first question, not what help you need – but what do you need to do your job? And I think that should be asked of everybody because you don’t know. I think the other thing is accepting that not everybody will have the ability to work regular hours. So, I mean, this has been the beauty of COVID, is that people are working from home and they’re working different hours, but they’re still getting the work done. And the focus should be on the ability to do the job. And an accepting workplace will be one that understands that the focus isn’t on that I can’t walk. The focus is on I can do a job and I can do it well. And I just really think that it’s about time to accept people with disabilities as just members of society and that we aren’t actually always just disabled. Sometimes we are women with disabilities. We might be members of the LGBTIQ+ community with a disability. We might be Aboriginal/Torres Strait Islander people with disability, and I think that’s sometimes forgotten. So it’d be good if we could just accept each person as they come into the room as themselves without any preconceptions and don’t try to overthink it. Don’t worry about what you should call a person. The only people who can say what a person with a disability should be called is the person with a disability. So I’ll use first language, first-person language, which is people with disabilities. Others prefer to use disabled people. That’s up to them. And we shouldn’t be the ones to decide what somebody else calls themselves.

Nathan Luker: [00:27:06] It’s great insight and we have a value in our organisation. See the whole person. And in a way that is something we try to stand for. And I really resonated with you at the start. Just ask. And I guess that’s part of the leader’s job. So we’ve hired well, we’ve onboarded well, we’ve both agreed that we have a listen culture and a speak-up culture that’s hopefully creating psychological safety. We’re learning. We have internal, external reporting frameworks in place. What do we do in the doing part of that culture? And once we have people with disability in the workplace, we’re working together. We spoke a lot in the past and past discussions around other stuff and just being good and well-intentioned, but not really knowing how to approach day one or day two. And I think you gave a great example about it being in the boardroom. Everyone gets up wanting to think, Oh, do I need to move chairs? What do I do? And it makes a bigger deal of someone’s entrance into the room than it needs to be. It’s a really great practical example. Do you have others that you can share with us with the doing part? And this is where incivility and ableism happens. It’s not so much in the fringes. It’s right in the middle, in the day-to-day.

Trish Malowney: [00:28:24] You actually get the two extremes. You get the people who are too scared to say anything, so they don’t. And then you’ve got the overthinkers who come up and sort of “What can we get you? Can we do this for you?” And I think that most of us are mature enough to say, “I need that,” or “could you get me that?” “I think I’d be better if I sat here” or the natural light I need or whatever. Although my husband reckons that I’m my own worst enemy because I’m too independent, so I’m the one who moves the furniture and not let other people do that. But, you know, just the common civil stuff that you do with everybody else. “Hello, how are you?” “Welcome on board. This is going to be great.” Don’t overthink it. Ask “is there anything I can do to help?” If we say no, then say fine. But just I think the real just treating us like you would other staff, unless you’re a rude person. And then don’t treat us like you treat other staff. Be polite. And I think it really comes down to the culture of the workplace. If you’ve got a good culture, this thing, these things will just flow.

Nathan Luker: [00:29:34] It just happens, exactly right.

Trish Malowney: [00:29:35] Yeah. You can tell usually straight away when there’s a toxic culture in there. Like in my current role, I have a song that I sing each morning, well, sort of sing and it’s called 100 Bad Days. And it goes 100 Bad Days makes 100 good stories. 100 good stories makes me interesting at parties. But I haven’t had 100 bad days in my current role. They’ve all been terrific. You know, it’s been it’s so nice to come into a workplace where everybody accepts you, where everybody thinks you’re just part of the furniture. It’s fine. You know, nobody tiptoes around. They’ll say, “what do you need?” And that’s fine. And it’s been interesting because now that I’ve been going into the office, I started this job during COVID, so I’ve only ever seen anybody from the neck up. And I don’t recognise anybody, but they all recognise me because I’m on calipers and crutches. And so that’s an interesting thing too. So everybody will come up and say, Oh, hi Trish, it’s so great to meet you. And I think I have no idea who you are, but you just get round that.

Nathan Luker: [00:30:45] I think that I’ll come back to that in a moment. 100 days song is beautiful and hopefully is the direction the disability Royal Commission will go in. There’s going to be many dark days and many bad experiences and evidence provided. However, hopefully, that leads to some amazing stories and opportunities to do good for the community in the future. That sounds beautiful. That’s an interesting point you raised around the transition to virtual and hybrid work. Do you think that’s a level playing field? In the situation we have with workplace representation, with relationships, with culture. That’s an interesting angle.

Trish Malowney: [00:31:21] You have no idea the number of people who have said to me that this has been so good for them. And that’s not just people with disabilities. It’s people with parental responsibilities. It’s people who live in rural communities who commute two and a half hours each way. It’s just been so freeing. But certainly, for me, it’s been fabulous. And I know for some of my neurodiverse friends, it’s been really great because they can work from home and they can work effectively from home. And one of the things that I worked out really easily is that people with disabilities always have to adjust. So we’re used to having to change quickly, to change the way we work, to suit other people. And so we were able to adapt to this quite well, quite early. Not everybody, because not everybody is the same. And I suppose like I’m in a privileged position because I can work from home. I’m not a frontline person and I’ve actually quite enjoyed it and I’ve actually increased my workload over COVID. So I usually work overseas two or three times a year. This week I was in Bangkok two nights. I’m off to New York next week. One week I worked in Indonesia, London, New York and somewhere else, or Kenya, all in the one week. I couldn’t do that in real life. So some of that pro bono work sort of. So in Kenya, I was working with the Department of Health on COVID and disability, so just sharing some of our resources so we can do that and it’s so easy.

Nathan Luker: [00:33:08] I think that’s a wonderful segue, Trish, into our last question that we ask all our guests. And I think we’re going to need to have round two at some point because we could continue this discussion in many directions and we’d love you to complete the sentence. Great workplace cultures rely on…

Trish Malowney: [00:33:28] Good leadership. Accepting policies and a really good disability action plan. And that must include employment of people with disabilities.

Nathan Luker: [00:33:40] Couldn’t agree more. Trish thank you for your time, your transparency, your vulnerability, your grit and everything you do for Victorians and Australians to advocate for people with a disability. It’s inspiring and needed and in short supply. Hopefully, when the Royal Commission delivers its report, we have more than 100 opportunities from some bad stories and learnings that we experience to make a real dent and impact to the nation. So thanks for everything that you do. Thanks for joining us.

Trish Malowney: [00:34:14] Thanks, Nathan. It’s been really enjoyable and thanks for being an encouraging interviewer.