Lauren Henley - Blind Australian of the Year

00:04S1

This is studio one on Vision Australia Radio.

00:09S2

So, Sam, who have we got for the next episode?

00:12S3

Uh, Lauren Henley, she's just one of the blind Australian of the year. Just doing a little bit of research on her here. I can't really find much, but.

00:21S2

Oh, I know, don't forget to ask about her role as a senior systemic advocate for safety.

00:27S3

Okay, I'll do that. 

00:29S2

And don't forget to ask about her role in Blind Citizens Australia, in Newcastle, in Newcastle.

00:35S3

All right. And what I was thinking of doing. Yeah.

00:37S2

And don't forget, don't forget you got to ask her about the, the campaign to get audio described television.

00:43S3

So why don't you do this interview.

00:44S2

Yeah, why don't I. Hello, I'm Lizzie and I'm Sam. Welcome to studio one, a weekly look at life from a low vision and blind point of view here on Vision Australia Radio. On this week's show I have a chat to Lauren Henley. Vision Link's Blind Australian of the Year for 2023.

01:11S3

As we always say at this point, please do get in touch with the show. Whether you have experience of any of the issues covered in this episode of Studio One, or if you think there's something we should be talking about, you never know. Your story and your insight may help somebody else who is dealing with something similar.

01:24S2

You can email us at studio1-at-visionaustralia.org.

01:30S3

Hello, Lizzie. How are you today?

01:32S2

I'm very well, Sam. And how are you?

01:34S3

I am good, but I understand you had a bit of a tour of the local suburb as you were coming here.

01:40S2

I did, I got lost my support worker and I decided to park on a side street and walk to the station. However, we found that we couldn't see the signs and therefore we got back in the car only to realise that we were meters away and we could have just walked a little further and found the entrance.

01:59S3

I love it when someone says you, you can't miss it. And I always say, well, I'm perfectly capable of missing something.

02:05S2

Yes, we were definitely capable of missing it. And we did so.

02:08S3

On this week's show we are talking to the Blind Australian of the year. So a couple of weeks ago, in fact, about a month ago, we covered the awards themselves and had a chat to last year's award winner. So what do we know about Lauren?

02:24S2

Well, we know that she lost her sight in a car accident when she was 20 and has since gotten into advocacy work she works with after she's a senior systemic advocate, and she has been a major player in the campaign to get audio description on Australian television.

02:42S3

And she's also on the line Welcome to studio one.

02:45S5

Thanks so much, Sam. Great to be here.

02:47S2

So, Lauren, I understand that you lost your sight due to some unfortunate circumstances. So what happened?

02:54S5

Yes, I was in a motor vehicle accident when I was 20 years old, so it was pretty much lights on, lights off. I woke up in the hospital with no vision whatsoever. Both of my eyes had been ruptured because my face hit the steering wheel and they then had to be removed. So it was then learning how to deal with life without vision.

03:11S2

So what sort of support did you receive after the accident, and was it hard to get back to life as normal?

03:17S5

I think I was very fortunate to be honest. I received fantastic support. I couldn't fault the level of support I received. I actually was able to learn Braille while I was still in hospital. I had someone from Vision Australia come out and help me with that. I was linked in with Guide Dogs while I was still in hospital, so by the time I got back home, I could automatically access services and get the ball rolling with that. And I think the thing that made the biggest difference in my experience was the fact that I was connected to other people who are blind or vision impaired very, very early on in the piece. 

And it meant that I could see what was possible because I suddenly had all these people in my life who had lived this for many years. They had been blind or visually impaired for many years for various reasons. And I could see that they were getting out there doing things, living their lives independently. They were happy, healthy, and it gave me hope and promise that one day I'd be able to get to where they were as well.

04:06S2

That's absolutely fantastic and very fortunate, because I've actually come across a lot of people lately who have gone blind later in life, either through accidents or through disease and illness, and they're finding that at the moment, there's not a lot of support around for them to access the community, and they find it really hard to link in with other services. So I'm really glad that you were able to to link in with the Vision Australia and Guide Dogs. Was it hard for you to accept the loss of your vision, or was it something that you were able to just deal with?

04:39S5

I don't know that anyone would deal with it super well immediately, because it is a huge life transition and because of my age, I was at a point in my life where I'd really decided what I wanted to do for the rest of my life, and that was very much working outdoors, doing physical labor. That's what I loved. So I couldn't do that anymore. It wasn't really just adjusting to life without vision. It was adjusting to different expectations of what my life would look like and what I'd be able to do, because I could no longer do a lot of the things I enjoyed. I couldn't do the career I once did. I used to play squash. I couldn't do that anymore. 

I used to do karate. I still do karate now, so I've been able to get back into that. But for a long time I didn't think that was possible. So I was in grief. It was really, really hard and for probably about six months, I honestly wanted to end it because I was such a visual person that I couldn't imagine how I could be happy without vision. So it was a very dark time for a while, no pun intended, but because of the people I was introduced to and the connections I made, I was able to get through that and come out the other side, and I've been able to thrive.

05:38S2

So you say that you enjoyed outdoor work outdoors and being with nature, do you? Are you still able to go outdoors and hike or do anything in nature these days? Only in the.

05:48S5

Last couple of years, and I think having access to support workers has really shifted that. And I'm really sad that not everyone has access to support workers, which is one of the things that fills my passion for advocacy, because funding in the disability policy area is very inequitable. But yeah, I've been fortunate enough in the last few years to be able to access someone to take me out for beach walks, hiking, whatever it is I want to do. And what's been a game changer for me is during Covid, I actually learned how to get down to a nature trail about a 20 minute walk from where I live, and there's folks in the path all over the place, and I just looked at that initially and thought, that's going to be impossible. 

But with the help of a really good orientation and mobility instructor, we set up some different. Markers with GPS technology, which I don't need anymore because I know the rises and falls in the paths and different sounds and things so I can get down there on my own with my guide dog whenever I want. And it's fantastic just to be in nature. And that's what resets me and really gives me a lot of peace and joy.

06:46S2

That's fantastic. Yeah, I also have a seeing eye dog and we love to go hiking, but we haven't yet found ways about doing it independently. So it's absolutely amazing that you can do that and that you've found ways around that. So it's been a game changer. Yeah. So how were you introduced to advocacy work and when did this come about?

07:06S5

Very accidentally, I've got to be honest. So I as I said, there was a very I lived in Newcastle and it's a very strong blind and vision impaired community there at the time. So I had peer support, I had people around me and at that time people were talking about trying to form a branch of Blind Citizens Australia in Newcastle because one didn't exist. So we got that over the line and we were able to form a branch. And one of my friends came up to me and said, if we nominate you as president, do you accept? And I'm like, oh yeah, whatever. Thinking that I wouldn't get in and, you know, didn't really think much of it. But then I was named president. I didn't really know what the word advocacy meant at that point. So I just thought, I don't know really what this is going to consist of. 

But I do know that enough of these people have put their faith in me to facilitate a process for them that I don't want to screw that up. So I took it really, really seriously. And I put everything I put into that role. And I like to think we did some really positive things while I was president of the Newcastle Hunter branch. So that was really my start in the advocacy game. And because I was a known quantity to blame Citizens Australia when a paid role came up, I was able to get my foot in the door and I got that paid role. So that's where it all started.

08:19S2

So what sort of things were you able to achieve with Blind Citizens Australia? 

08:23S5

So when I was branch president, it was very locally based. So we worked with the local council to establish a sensory garden on Newcastle Foreshore, which is still there today. We were able to get tactile ground surface indicators installed at a local shopping centre. There were various other things we did as well as a staff member working for Blind Citizens Australia, we did a lot of advocacy around audio description and that eventually led to audio description becoming available in cinemas. Yeah, there's a lot of things, but they're not things that I can claim sole responsibility for because it's always a team effort.

08:55S2

Yeah. Of course. So explain your role with the AFP. What is the AFP and what is your role there?

09:02S5

Yeah. So after is the Australian Federation of Disability Organisations and it's really a peak of peak bodies. So our organisational structure is we are a federated model. So we exist at the national level. And then underneath that we have member organisations across Australia. So we have 37 member organisations and they can represent very different cohorts. So as an example a few of our members we've got blind citizens Australia, polio Australia, Miss Australia, deaf blind Australia, deaf Australia and what it means is it puts us in a really unique position to go to government with a considered perspective on things. 

Because we've consulted with those 37 member organisations, we've collected all that expertise, we've collated it into one nice policy position, and we're going into government and saying, look, we know this is going to work because all of these organisations back it, and that's making your life easier because they don't have 37 different organisations coming to them with a different perspective. So it actually saves them time as well at the end of the day. So my role at after is senior systemic advocate, so very much getting in the face of politicians and ministers and trying to lobby them to make change, to improve outcomes for people with disability in Australia.

10:11S2

Well, I imagine that's quite a highly stressful job with a lot of pressure. Yeah.

10:16S5

Look, it can be, but I think I sort of thrive on the chaos, to be honest. So it suits me. I like it.

10:22S2

Amazing. And I read in various articles that you were a major player in the campaign to have audio described programs broadcast on public television in Australia. When did you realize that this was an issue that needed to be discussed or brought to the attention of politicians?

10:38S5

It would have been when I first started working for Blind Citizens Australia, I really hadn't heard of audio description. I didn't know what it was until I became involved with BCA, and BCA had been lobbying around audio description for many, many years already. So I really saw this as a huge level of injustice for people who are blind or vision impaired, because in comparison, people who are deaf or hearing impaired, they've had access to captions mandated under law for a couple of decades now. But we still miss out. So I was really driven to try and improve that. For people who are blind or vision impaired, because it just didn't seem fair to me.

11:12S2

Are you much of a movie buff yourself? Do you enjoy to watch television?

11:15S5

I'm actually not, to be honest, which is the ironic thing about it. I don't watch a lot of TV, but when I do watch TV, I want to know what's going on, obviously. And I live by myself. It's not like I've got a set of eyeballs in the cupboard I can just pull out to describe things to me, but even. No, I don't watch a lot of TV. It's really just the principle of the thing for me. I believe everyone should have equitable access to that medium whenever they want to have access to it, for sure.

11:40S2

I can I can speak from experience there when going to the cinemas when I was younger or watching a show with my family, they used to get really irate at the fact that they had to describe things to me. So the introduction of audio description is amazing. Absolutely amazing. I can go to the cinema and watch almost any movie. And so what channels are incorporating audio description now?

12:01S5

It's already available on the ABC and SBS, so to public broadcasters. But as a result of a complaint lodged with the United Nations, the Minister for communications has committed to working with the public, broadcasters and subscription network providers as well to develop a plan to basically implement audio description over a period of time. They haven't actually come out and said, we are going to legislate to make it mandatory for them to do that. So at this stage, it's a bit of a waiting game. And what it means is the advocacy doesn't stop here. We really need to keep the pressure on government and say, well, we actually need this to be legislated, just like captioning is, of course.

12:42S3

The Blind Australian of the year awards were presented on the 27th of October and the winner, of course, was Lauren Henley. The winner of the Employer of Choice award went to Reading Radio in Brisbane earlier this month. Peter Greco interviewed Chris Corcoran.

13:00S6

Just a bit about your employees and the sort of roles they provide, because I actually know a couple of them reasonably well. You want to give us a bit of an insight into what do they do?

13:09S7

Absolutely, mate. So we have three absolute fabulous talents here Paul Price, Steve Sparrow and Steve Richardson or Richard Sparrow and Paul. The three boys have been working here since the 90s. So coming up to 30 years and you know, just the skill in production and their capability is just it's amazing. They make all the programs sound a whole lot better.

13:33S6

Yes, actually I work with Steve Richardson for quite some time on an audio magazine that Blind Australia did, and he was a wonderful asset and a great colleague to work with. And and Steve Sparrow will say he's a very talented musician and songwriter as well. Absolutely.

13:49S7

Just released his brand new album Now and Forever, which we've been playing on Reading Radio, and I think it was it got into the top 20 of the Australian country charts. So amazing talent, fantastic audio producer, and he just has a real ear for for getting the best out of all the volleys with the programs.

14:06S6

What about the kind of, you know, the logistics, if you like, of employing a person with a vision impairment? I guess there's a lot of technology out there that can help, but I guess it's a knowing it and they and then be accessing it.

14:17S7

Yeah, absolutely. Peter, I mean, one of the biggest impediments, I guess, is a lot of the audio technology that's coming out, particularly around sound recording, you know, is not not compatible and not functional for the blind and low vision community. And, and that's been a real not not an issue for us because there is alternative programs, but some of them are building those contingencies in there, but others aren't, unfortunately. And you know, that that obviously can sometimes be a frustration for the boys because they're wanting to jump on Pro Tools, for instance, and and have a play around, but it just doesn't have that compatibility there, which unfortunately, they're not building that into a lot of the programs.

14:56S6

Which is kind of interesting, isn't it? Because I guess without getting too much off the topic, I mean, a lot of people are blind or low vision, obviously, you know, love their music, love their audio. You'd kind of think that that it kind of fit in naturally with, you know, making things accessible.

15:09S7

Absolutely, absolutely. I mean, we've got some good programs here that we use. And really, I mean, they pretty much cover all the bases. There's really nothing much that can't be done with these programs, as far as, you know, getting the best out of the audio. But it'd be nice to have a little bit more choice there with what we select.

15:27S6

Now, I know that your chair was at the presentation, and I think the Steve Sparrow kind of do a bit of entertainment on the day or in the evening as well. 

15:36S7

He did. I don't think they let him loose completely with his guitar. I know he was wanting he was wanting to do a couple of love songs up there on stage, but I think they might have reeled him in. But yeah, Steve was there. John Preston was there from our board as well as Marina Marin as well. So they accepted the award and we did the inclusion Expo earlier in the day, which was just fantastic to be a part of.

15:58S6

Yeah, that's part of the Blind Australian of the year, sort of presentation, wasn't it, to kind of make it a kind of a, you know, an all day into the evening of Venezuela?

16:07S7

Yeah. It was, it just brought everybody together. It was a chance for, you know, for us to showcase what we do. And because not everybody knows, you know, about reading radio and those sort of events are fantastic just to network and meet people and, and be able to just spread the word that, you know, we've got some amazing programs and tune in and listen.

16:26S6

Just Chris, you're kind of a stand alone organization if you like. I mean, where as in part of the Voice Australia radio network. But reading radio in Brisbane is kind of a standalone organization.

16:36S7

We are, we are, we're independent. It's just us and the bricks and mortar that we stand on. Peter, there's, we've got yeah, we've got nobody, nobody backing us or we're not part of, you know, a consortium or a group.

16:48S6

Yeah. So how do you find that? I mean, obviously must be tough, I guess things like the CBA and the CBF or the community broadcasting organizations kind of, you know, you're part of that umbrella, if you like, under that umbrella.

17:01S7

We are we are. I think it's like, you know, the majority of community stations, not just within the sector, you know, it is getting more challenging. You know, funding a radio station is expensive. You know, there's a lot of costs, particularly costs around transmission, electricity and equipment and attracting income. To be able to do that is getting more of a challenge. Now, as you know, people are sort of switching across to the digital digital sphere as far as promotion as well. So that's another sort of thing that's come into the mix. It's made it more challenging, but we move forward and we look for innovative ways to to fundraise and garner sponsors. And yeah, we're really proud of our.

17:45S3

Thank you, Peter Greco, for allowing us to use that interview. You can catch the entire interview on the Leisure Link podcast. We will be attaching a link to that in the podcast notes. Now back to Lizzie and Lauren.

18:00S2

You say you took your complaints to the UN? From what I understand, that was quite a lengthy process. So where did you start and how did you go about this?

18:07S5

Yeah. So in order to lodge a complaint with the United Nations, you need to have first exhausted all domestic remedies. So that means whatever remedies exist in Australia for you to pursue a complaint of that nature. So I'd already been through the Australian Human Rights Commission's process. I'd lodged a complaint under the Disability Discrimination Act, and that wasn't resolved through conciliation. That process did take, I think, probably about 18 months, though, in itself. And once that was all done and dusted, I was pretty confident that there was nowhere else to go with this in Australia, because even when I worked at Blind Citizen's Australia with Lodge, which lodged so many disability discrimination complaints about this issue and it just wasn't getting anywhere. 

So I looked at the United Nations mechanism. So under the convention on the Rights of Persons with disabilities, there is an avenue to lodge a complaint with a committee of international experts called the Committee on the Rights of Persons with disabilities. If you feel that your rights under the convention have been breached, it's a very technical and legalistic process and quite frankly, a little over my head. So I didn't do that alone. I had representation from the Public Interest Advocacy Centre, who are based in Sydney.

19:15S2

That's amazing. And how long did the process take you from exhausting all of the the options here in Australia to going to the UN?

19:23S5

It was about seven years from start to finish, from when I first lodged a complaint with the Human Rights Commission to when I got an actual outcome from the United Nations Committee. That was about seven years.

19:34S2

Oh, wow. That sounds like, again, a very highly stressful process. And you seemed like the kind of person that can definitely cope with with that sort of environment. Yeah.

19:45S5

Look, I think I don't want to put myself up on a pedestal because I only had to catch up with a friend last night who said she was honestly a bit intimidated by me because it seems like I deal with things really well and I never get any anxiety or things like that. I had imposter syndrome for years because I'm working with people with law degrees and, you know, masters in public policy. I don't have a degree at all. And I do get anxious about things from time to time. So I don't want people to think that people who are out there doing things at a higher level don't feel those things, because we do.

20:15S2

Oh, of course. And that's one thing that really needs to be understood, is even people who work in a professional capacity that requires them to be under pressure a lot. They also deal with things like anxiety and, um, yeah, that's that's amazing that you've been able to to to get audio description broadcast on ABC and SBS and go to the United Nations. A lot of people would crack under that sort of pressure.

20:41S5

Yeah. And I think I'd say again, even though that complaint had my name on it, it was never an individual thing. Even beyond the support I had from the Public Interest Advocacy Center, I had a lot of support from the leaders who are working at Blind Citizens Australia. At the time, Vision Australia had offered their support as well. So everything I do, it's always a collective effort and I don't think it's possible to achieve good results doing things. As a lone wolf, I like to work with other people because I think you get better things done that way.

21:08S2

Awesome. So you were nominated this year for Vision Links Blind Australia of the Year award. Do you know who nominated you?

21:15S5

Yes, it was actually my support worker and orientation and mobility instructor.

21:20S2

Wow. And what were your feelings when you found out that you were nominated? I guess I.

21:24S5

Was really touched that she took the time to do that. I don't think anything that I do is overly remarkable. It's just I just I enjoy it to start with, but it's just something that is not a big deal to me. So I guess I'm very honoured to have received the award. But yeah, I think there's so many people who are deserving of it. And yeah, I don't know, they could have picked any one really.

21:46S2

So what are your goals moving forward for the future?

21:49S5

Well, one of my biggest passions in the advocacy arena is trying to level the playing field for older people with disability who do not qualify for the National Disability Insurance Scheme because they are treated appallingly and they don't get near the level of access to services and support they should. So that is my goal. Moving forward is to keep on tackling that one and hopefully eventually we'll see a situation where we don't have such a horrendous amount of age discrimination in our disability policy in Australia, for sure.

22:18S2

Because there's definitely a gap when it comes to the support that you receive under my aged care compared to the NDIS. And as someone who volunteers and works with a lot of older people that are under my aged care, I can definitely see the the gap. I believe you were an author of a study about adaptive technology and home modifications. Yeah.

22:41S5

So in my previous job at Council on the Ageing Victoria, we were looking at trying to improve access to services and supports for older people with disability. But we were specifically focusing on assistive technology and home modifications because they're such huge enablers. They make such a big difference to people's lives. So what we wanted to do was do some economic modelling to determine how many programs currently exist outside the NDIS. How much does that cost in government, and how much might it cost them to roll all of that into one nationally consistent program? 

What we found out was there's 108 different assistive technology in home models programs operating outside the NDIS. So imagine trying to navigate that absolute maze of funding streams to figure out where you can get the support you need. That's really hard. But on top of that, what we found out was for every dollar that spent on high cost assistive technology, $2 is spent on organisational costs. So they're then duplicating those organisational costs across those 108 programs, which is a colossal waste of money. And that's money that could be going back into the hands of the consumer if government was doing things more efficiently. 

So it's really given us the basis that article and that study, to go to government and say this is going to create new cost efficiencies. If you harmonise all of these programs that are not equitable, they're not nationally consistent into the one harmonized program.

24:04S2

So how far away are you from achieving that goal and getting government to understand the waste of money that's happening with with these organisations?

24:14S5

Good question. I've heard whisperings. I don't know how confident I am, but I have heard whisperings that when the report from the review of the NDIS that's been happening over the last little while lands, which I think the first week in December that will be made publicly available. There may be something in there around that, a recommendation that might reflect that. I'm hoping that's the case. But yeah, the devil's always in the detail, so we'll have to wait and see.

24:38S2

And lastly, you said before that you have a guide dog. How long have you had your guide dog for? And did she get to come with you to the UN? Did she come with you when you talk to politicians and senators?

24:49S5

And so my guide dog Valentina is I've had her for five years just on a five years. She didn't come to the UN with me, but she does come along to meetings with ministers and senators and whoever else I'm meeting with. And it really does make a difference, to be honest. I participated in a government relations masterclass a couple of months ago at Parliament House, and this was a mainstream course, so I was the only person who was who was blind there, but everyone else was saying, oh, we're so jealous because you have an icebreaker. Automatically. Whoever I'm talking to is so smitten with the dog that they just want to hear what I have to say. So it's really been a good thing having her with me.

25:26S2

That's amazing. And do you find that she helps you? Do you feel more confident when you have her in public? Do you do you feel like you can deal with the stress and pressure of such a yes?

25:38S5

One of the things I find very uncomfortable to this day is networking. Like if you go to a conference or something like that, I find the networking really uncomfortable, and I found it a lot more uncomfortable as a cane user than as a dog handler. Because it is an icebreaker, you get a lot more positive interactions with the general public. I find with a dog as opposed to a cane. And so even if someone comes up to me and they just ask a question about Valentina, it's a way into a conversation with that person. So it definitely has made my life a lot easier.

26:08S2

Amazing. And what would you say to anyone that's trying to get into advocacy, whether it be advocating for themselves or in a professional capacity? Do you have any advice for them?

26:18S5

Well, all of my jobs, to be honest, have come about through volunteering, so I really strongly believe in volunteering. If you can get it, get your foot in the door doing that. Make yourself indispensable. Show that you're committed, show that you're passionate and you never know what will come from that. So just surround yourself by the right people.

26:35S2

Thank you for chatting with us today, Lauren. It's been absolutely insightful and I've really enjoyed it. Chatting with you and catching up and listening to your journey into advocacy and and how you've been able to get audio description on Australian television, and also how your guide dog helps you.

26:54S5

Thanks so much, Lizzie. It's been a pleasure.

27:02S3

And that's all for this week. A big thank you to learn Henley and an even bigger thank you to Marie Brampton, who helped us to set up the interview, and the Blind Australian of the year awards in general. Marie is off to pass new. There's a lot of that going around, so we wish her the very best. Next week, Renee Lyon from quantum comes into the studio to show us some of the latest adaptive technologies. We love playing with toys.

27:29S2

But between now and then, please do get in touch with the show. Whether you have experience with any of the issues covered in this week's episode of Studio One, or if you think that there's something we should be talking about.

27:41S3

You never know. Your story and your insight may help somebody else who is dealing with something similar. Our email address is studio one at Vision Australia. Org that's studio one advising australia.org.

27:57S1

Vision Australia Radio gratefully acknowledges the support of the Community Broadcasting Foundation for Studio One.