Spaces - Rosemary Kayess

Sam Drummond 00:03

What makes a great space and how does a space influence the way we live, who we interact with and ultimately where we see ourselves in our communities. I'm Sam Drummond and this is Spaces on Powered Media. Each episode I'm taking our guests to their favorite place. We'll get an insight into why that space works for them, share some of the moments that have changed their lives and hopefully learn something along the way.

Picture yourself in a world made for you. You can get to the next building with ease, see the people you want to see, hop on and off public transport, reach that item at the supermarket, attend that job interview, get into that restaurant that everybody has been talking about. This world is a reality for many, but for people with a disability, the world around us has been built for other people. Sometimes our homes are our sanctuary, and if we've got the right supports, a place where we know we can live free of the obstacles the rest of society has put up.

And that's why I'm so excited about the space's choice of our next guest. Rosemary Kayess is a human rights lawyer, advocate, academic, and now Australia's Disability Discrimination Commissioner, and she joins me now. Thanks for coming in.

Rosemary Kayess 01:28

Hi, Sam.

Sam Drummond 01:29

Well, should I say thanks for having us in your home. Can you take us into your home? What do you see when you enter the door?

Rosemary Kayess 01:41

The thing about my place is the natural light. I live in a bit of a fish bowl. I bought an old Californian bungalow in inner Sydney back in the 90s and I renovated it in the early 2000s and the two architects that I worked with, one is a long -time friend of mine Vanessa, Vanessa Palfriman and her and Andrew just did a beautiful job of extending this little Californian bungalow and it's just glorious, the natural light. I get beautiful winter sun, the ceiling windows and it's just glorious. It's really, really lovely.

Sam Drummond 02:45

That concept of design sometimes we can take for granted, did they have a history of designing an accessible space or were they more focused on just the light?

Rosemary Kayess 03:00

No, they weren't specialists in disability design, but Vanessa and I had known each other for a long time. We travelled away together. We'd, you know, party together. And she knew me and she knew my likes. And she knows I'm a lizard. I just love the sun. So the house has got this central deck and then a pavilion. It's all connected, but there's like a front pavilion and a back pavilion and there's a central deck to it.

And it's really quite sun drenched in winter. It's just beautiful. And so it's a space where I can sit there in the sun in winter and read my book or, you know, do what I'm doing and just turn off from the rest of the world. And it's very nice.

Sam Drummond 04:04

What are the adjustments that you had to make in that design as a person with a disability from the design that maybe they would have had if they'd just been briefed to get that this person is a lizard?

Sam Drummond 04:21

Were there extra things that you needed?

Rosemary Kayess 04:27

Fundamentally, I don't think anybody that looks at my house goes, that's a house for a person with a disability. Now, some might say I have quite a significant disability. I mean, I use a power wheelchair, I can't move my arms. So paralysis from my shoulders down. So you look at my house and it just looks like every other of the Californian bungalows in the street with French panties out the front. And even inside the house, it's not overly obvious that it's a house that a person with a disability lives in.

It has probably slightly wider doorways. Oh, well, I definitely know the doorway to my bedroom is wider because I had to widen that. I had some surgery and was on enforced bed rest for a long period of time. So not wanting to be stuck in my bedroom the whole time, we widened the door. So the door to my bedroom is a little bit wider, but it's not noticeably wider. So maybe the height of my desk, I've got a built -in corner desk in my study where I do a lot of work from.

And that's at a height that probably isn't a natural height for an office chair, say, but anyone sitting on a stool would be quite comfortable working at that height. But there's nothing overly obvious about it being a house of somebody that A, uses a wheelchair, or B, you know, has a disability.

Sam Drummond 06:27

So when builders talk about the cost of implementing, say, a disability standard and that I've had people tell me we should just do it in homes and offices where there are people with disabilities, if your house isn't noticeably different, is there any reason why a builder should say that?

Rosemary Kayess 06:59

Well, probably the age of my house means that the ceilings are higher and it gives a sense of more space, the bathroom is probably larger than, but I would not say I've seen bathrooms that are larger than my bathroom.

Yeah, I don't know. I mean, the arguments against accessibility I just don't think stack up because it's so simple. Now that elements have been mandated, they seem to be able to do it. What stopped them prior to the mandating? I mean, I really don't know. It's made bathrooms much more simple. I don't think the aesthetics need to be lost. The craft or the art of architecture is the challenge to shape a space to meet the needs of people.

And so one would think they would enjoy that challenge. So I think the existence isn't from the design aspect. I think it really just comes down to what property developers can squeeze into a space. And I mean, that's not rocket science. Everybody knows that. But at some point, we need to realise that whilst you save money at that point, it costs further out. The ripple effect is significant. You lose diversity in your community, you lose a sense of space, which can impact on people, which then can impact on the interrelationship of the people in that space.

So yeah, I understand why property developers are resistant because of the return at that point. But the return at that point doesn't justify the costs beyond that point.

Sam Drummond 10:05

It sounds like your next career might be architect.

Rosemary Kayess 10:09

I am a frustrated architect, there's a famous night coming home from the pub with a couple of friends and doing this walk down along our street from the pub and giving a little review of each review and critique of the housing styles on the way home. I may have had a few days.

Sam Drummond 10:34

Everyone's an architect after a few beers. Yeah.

Rosemary Kayess 10:38

No, I think architecture would have been such fun. It's one of those It's one of those areas where you get to to draw and do things with your hands But at the same time you've really got to think you've really got a problem solve Yeah, I toss around with the idea of architecture and medicine because I love that problem problem solving. How I became a lawyer, I really don't know.

Sam Drummond 11:06

There is an element of problem solving in that.

Rosemary Kayess 11:09

There is an element of problem solving in being a lawyer, but yeah, obviously I came up with the one that didn't involve my hands too much once I broke my neck.

Sam Drummond 11:21

What's your favorite memory of your home?

Rosemary Kayess 11:26

I don't know, there's been some cracking parties at my place. Friday nights, Friday nights at my place. It was a thing for a long time, we'd have people around for dinner on Friday nights and some of them would turn into dance parties.

Sam Drummond 11:46

And that element of space that you've created, I think a lot of people now just don't have the room for that sort of party.

Rosemary Kayess 11:56

Yeah, I'm...

Sam Drummond 11:58

Very lucky thing to have.

Rosemary Kayess 11:59

Yeah, very lucky. I have a large family, a large, loud family. But I've got three brothers and they've all got offspring and those offspring have got some of those offspring have got small ones. So it's good when the family gets together, we're a close family. So it's really good that you know, we've got, I've got a space where I can have them all there and we can be comfortable and yeah...

Sam Drummond 12:28

The, there is the closeness of your family influenced by the spaces that you're you're in, and I I get the feeling from people who grow up...

Rosemary Kayess 12:41

Ahh...

Sam Drummond 12:42

... in one or maybe two houses as a kid influences how close their family can be. What were your houses like as a kid?

Rosemary Kayess 12:52

Houses would be like, we only ever lived in three homes, but really only two homes. Two of my brothers had moved out by the time we got to the third one. And for all intents and purposes, I'd sort of moved out by the time we got to the third one.

Sam Drummond 13:17

And then was there, so you have an acquired disability and at some point there must have been a realisation that the way that your houses were going to be needed to change in a sense that you've experienced the world made for you and the world not made for you. Do you remember a moment of going back to a house and realising it wasn't going to be the same?

Rosemary Kayess 13:49

Well, I mean, the moment that you become conscious of the impact of the motor vehicle accident that you've been in, it's not like you wake up one day and go, oh my God, it's a much more dawning realisation over about five to 10 days where you come to grips and then you sort of hope that that's going to change. But you do, I went through a, you know, problem solving of well, how's this going to work? How's that going to work? Most probably overly dramatically, because you know, life's a bit of a spin out when you've just broken your neck.

But you know, you know that the house on the top of the hill that you live in, that's got fabulous views of the rolling hills around the area is not going to be all that great for a wheelchair. The sunken lounge room just isn't going to be as funky anymore. It's not going to be that mid-century modern house that you love for its design with a cathedral ceiling. It's going to be a nightmare. So, no, you know. And then, so what were my options? And so, you know, I lived in a small group home, which was an old federation place that used to be a nursing home, a small nursing home. And I lived with, you know, 15 other people that were predominantly a bunch of blokes.

Sam Drummond 15:57

And so we have seen over the last few years in the Disability Royal Commission an insight into what those homes can look like. And it's safe to say that it's not up to scratch in a lot of cases.

Rosemary Kayess 16:13

I was incredibly lucky. The place I lived in was not too bad. I had all the hallmarks of institution. So you became institutionalised. You started, you know, I was studying at university and I started organising my life. So I minimise my time at that in the, you know, meals. If you wanted to eat the food there, the best time to eat was at 4.30 in the afternoon. Who the hell has dinner at 4.30 in the afternoon?

Sam Drummond 16:49

Toddlers and four-year-olds, I can tell you that - and me at the moment, but it shouldn't be that way isn't it?

Rosemary Kayess 16:56

Well, I can behave like a four-year-old sometimes, but I'm a little bit older than that now. But so you do, you manipulate the situation. You either make sure you're there at 4.30 in 8, or you come in at 6.30 or 7 and get in here from down the road or something. I lived on Korean noodle soups for a long time. I was lucky enough to have my own room after a couple of years. I was there for about 10 or 12 years, I think, which is a long time. But affordable and accessible housing was not to be had. And so...

Sam Drummond 17:53

And this is the 80s and 90s, but it's still happening right now. Yeah. What is the pathway from trying to go and get Korean noodle soup and not eating at 4.30 to people, perhaps not having a light filled Californian bungalow, but a house that they love?

Rosemary Kayess 18:16

Look, it's affordable, accessible housing. It comes back to the building standards that we were talking about. The Building Code of Australia needs to have far more elements of design that incorporates the complete context of the human condition so that housing is far more accessible. Affordability is on the table already and really being talked about trying to be addressed. But I'm worried that in the push to get numbers to address affordability, that they'll see accessibility as going against the affordability.

Rosemary Kayess 19:13

And I just think that's so wrong and problematic.

Sam Drummond 19:19

So you've spent a career addressing this at a very high level as a lawyer. That's one way that you've been, I guess, advocating for that. And through that, you've done a fair bit of travel and, you know, it can start at international law and then it's incorporated into our law here in Australia. And that's your job now. I wish. Well, to an extent, we're still trying to push for that. But when you're traveling, how are you ensuring a homely experience outside your own home?

Rosemary Kayess 20:05

It's difficult. It's really difficult. I mean, that's why I love my house so much because that's where I can just get home and be. I can go straight to a desk that I can use and I can operate my devices. My iPads are on a small table in my lounge room, my desktops in my study. I can, you know, if I want to just sit a sip a hot cup of tea at the bench I can and so it's there. It's set up. It's organised. I can do, I get to Geneva or New York and I can't... you know, I've got to sit around with two pillows on my lap and my iPad precariously balanced on those and work from there and it's not easy and it's not always, you know, it's not always effective.

So it's very difficult to work in spaces that just aren't accessible for me. Hotel rooms notoriously tight. You try like I've got to rebuild every hotel room I get to. We stay at the same hotel in Geneva. It's hilarious. God knows what the staff think of me in my entourage because I travel with a couple of people. I mean, just, I need at least two people just to get me on and off an aircraft and that's becoming harder and harder. Don't start me on bloody aviation.

Sam Drummond 22:00

There must be something with disability discrimination commissioners and planes. Maybe because you start using it a lot more.

Rosemary Kayess 22:10

Probably, probably, but I've been using planes for the last 25 years. I've been doing a lot of travel. So yeah, and I really don't know what all the stuff think of us rocking up and just doing all this weird stuff to the hotel room. They have this massive king-size bed and I want to change to a single bed so I can maneuver a hoist and put little wooden chocks underneath the legs so the hoist can get it underneath it. So yeah, that's...

Sam Drummond 22:52

They also love their baths in hotels. Ahh!

Rosemary Kayess 22:55

That's the one thing, no, there's no bath. I don't have to, there haven't been, no confusion with the bath. 

Sam Drummond

That's good. I mentioned that you spent a career advocating for stronger laws, and I'd wanted to introduce you as activist, and you said, no, no, no activist... what's the difference for you?

Rosemary Kayess 23:22

I just don't think I should claim a space that I don't occupy. There are people out there in organisations of people with disability, representative organisations of people with disability, that are strong, really passionate activists, do a really lot of hard work and you know chip away at the inequalities and the discrimination that people with disability experience and do all the really hard yards that bring those issues forward to me as Vice Chair of the Committee on the Rights of Persons with Disabilities and now as the Disability Discrimination Commissioner and their work needs to be recognised and acknowledged.

You know they do a lot of hard work and I have not been a part of a disability organisation in Australia and so I don't want to claim that space. I'd rather their work be recognised for the good work that it is and that I'm seen doing what I do and what I've done for many years is provide legal analysis. I've worked closely with DPOs and DROs over the years but I'm not not part of their organisations. I don't do what they do. I have a different role and I advocate and I think it's an important role otherwise I wouldn't have applied for the job but I also think what they do is incredibly important and needs to be valued in and of itself.

Sam Drummond 25:31

So on that, with your current role now, what's your vision for an accessible Australia and how are you going to advocate for that?

Rosemary Kayess 25:42

I really like us all to have, I mean, the wider community, to have a better understanding of disability, to understand the nuances of the impact the environment can have on people's lives and getting that more nuanced understanding of that and getting rid of things like the low expectations of people with disability and to understand how all that feeds into the segregation of people with disability. And I think segregation is probably the biggest problem that we face and that things like the NDIS and especially this review, we need to make sure that the NDIS is actually creating a lot of segregation.

It's like we're building a parallel universe for people with disability and it's all built on these assumptions around people with disability and we're doing, we're building this parallel universe and segregating people, entrenching it and financially incentivising it and we're putting bright shiny happy faces and marketing all over the place and it's going backwards. I'm very concerned.

Sam Drummond 27:32

So, before you achieve that, you're going to go back from Melbourne where you are now to your home in Sydney. You're going to drive there, which seems to be...

Rosemary Kayess 27:52

All right.

Sam Drummond 27:53

It is a bit of a slight at the airline companies who just take too long or is too inaccessible.

Rosemary Kayess 28:02

It's too inaccessible and it probably takes me as long. It would probably take me, I live very close to the airport, so it would probably be a three-hour lead into the flight. Yeah. I get here, I wouldn't have accessible transport once I got here. Tullamarine's a bloody long way from the city, so maybe another hour, another hour until I sort out the accommodation or get to where I've got to go. I'd get one meeting in and I'd have to start the process to go back.

Sam Drummond 28:55

Which is exhausting. Yep. And I think people forget that just self-advocating is exhausting. When you get home in Sydney, what's the first thing you're going to do?

Rosemary Kayess 29:09

This time of year, since it'll probably be about 10 o 'clock at night, it's a 12... you can do it in nine hours, but you've got to stop and have a break. So it'll probably be a 12 hour trip again. It'll mostly be about 10 o 'clock at night. And honestly, turn the fire on and have a glass of red wine.

Sam Drummond 29:37

I'm impressed that you can do that at 10 o 'clock and you're not just falling to sleep.

Rosemary Kayess 29:43

Look, I probably will. I probably won't have the class. No, I know who I am. I'll have the class.

Sam Drummond 29:50

Well, thanks for inviting us into your house, it's been a really nice insight into your world and into your vision for where Australia is going on our disability journey. Rosemary Kaye is a human rights lawyer, advocate, academic and Australia's Disability Discrimination Commissioner. Thanks for joining me. 

Rosemary Kayess 30:14

No problem, I'm saying.

Sam Drummond 30:16

Spaces was recorded on Wurundri, Jara and Bunurong land. Spaces was produced by Humdinger for Powerd Media. The series was created by Sam Drummond with support from Emma Sharp and Lucy Griffin at Humdinger. Field audio recording by Matthew Hoffman, editing by Simon McCulloch.