WEBVTT - Neale Daniher: The voice MND cannot silence

0:00:03.400 --> 0:00:06.400
<v Speaker 1>From The Australian. Here's what's on the front. I'm Claire Harvey.

0:00:06.480 --> 0:00:12.840
<v Speaker 1>It's Friday, December twelve, twenty twenty five. One of the

0:00:12.880 --> 0:00:16.640
<v Speaker 1>youngest members of a prestigious Melbourne AFL family has been

0:00:16.760 --> 0:00:20.560
<v Speaker 1>unmasked as a rapist. Tom Sylvanny is the son of

0:00:20.600 --> 0:00:25.720
<v Speaker 1>Carlton legend Stephen Sylvanni and TV presenter Joe Sylvanny. The

0:00:25.760 --> 0:00:28.479
<v Speaker 1>twenty three year old was convicted on December five of

0:00:28.680 --> 0:00:32.320
<v Speaker 1>raping a woman twice after a house party. His identity

0:00:32.479 --> 0:00:35.479
<v Speaker 1>was revealed after a suppression order was lifted by the

0:00:35.560 --> 0:00:42.640
<v Speaker 1>Victorian County Court. The Australian government made more than seven

0:00:42.720 --> 0:00:46.479
<v Speaker 1>billion dollars in tax revenue from legal tobacco sales in

0:00:46.520 --> 0:00:50.000
<v Speaker 1>the past financial year, but it lost almost double that

0:00:50.400 --> 0:00:54.080
<v Speaker 1>to the illegal trade. Those stories are live now at

0:00:54.120 --> 0:01:02.360
<v Speaker 1>the Australian dot com dot au. You can't dictate your circumstances,

0:01:02.640 --> 0:01:06.520
<v Speaker 1>but you can control how you respond. That's the central

0:01:06.560 --> 0:01:09.360
<v Speaker 1>message in a new book by Australian of the Year

0:01:09.440 --> 0:01:13.480
<v Speaker 1>and AFL star Neil Danaher. And today, even though Danaher

0:01:13.560 --> 0:01:17.240
<v Speaker 1>has lost his voice to the ravages of motor neurone disease,

0:01:17.680 --> 0:01:21.160
<v Speaker 1>you're going to hear his words in his voice, sharing

0:01:21.200 --> 0:01:24.039
<v Speaker 1>some of the wisdom he's gleaned from more than a

0:01:24.120 --> 0:01:29.960
<v Speaker 1>decade living with this incurable, untreatable, terminal illness. Stay with us.

0:01:38.640 --> 0:01:42.160
<v Speaker 2>Life will throw difficulties that none of us get a

0:01:42.160 --> 0:01:46.640
<v Speaker 2>free run. But you still get to choose your attitude,

0:01:46.920 --> 0:01:51.880
<v Speaker 2>your effort, your response, and the meaning you make from

0:01:51.960 --> 0:01:52.680
<v Speaker 2>what happens.

0:01:55.680 --> 0:01:59.279
<v Speaker 1>This is the voice of Neil Danaher, a legendary former

0:01:59.320 --> 0:02:03.280
<v Speaker 1>coach player in the game of Ossie rules Away it

0:02:03.280 --> 0:02:06.240
<v Speaker 1>goes Neil Danahoe, when are you gonna go a toper goot?

0:02:06.320 --> 0:02:08.000
<v Speaker 3>Kick Neil dan.

0:02:09.960 --> 0:02:13.240
<v Speaker 1>Despite what you just heard, Neil Danaher, the twenty twenty

0:02:13.240 --> 0:02:17.840
<v Speaker 1>five Australian of the Year, cannot speak. Neil has for

0:02:17.880 --> 0:02:23.000
<v Speaker 1>the past thirteen years lived with motor neuron disease, a terminal, degenerative,

0:02:23.080 --> 0:02:26.400
<v Speaker 1>incurable illness that has robbed him of not just the

0:02:26.520 --> 0:02:29.640
<v Speaker 1>speed and strength that made him a star at Essendon

0:02:29.680 --> 0:02:32.880
<v Speaker 1>throughout the eighties and the big presence that made him

0:02:32.880 --> 0:02:36.960
<v Speaker 1>a rock star coach for decades beyond. Neil's now also

0:02:37.120 --> 0:02:40.840
<v Speaker 1>lost the basic abilities we all take for granted, walking,

0:02:41.200 --> 0:02:46.680
<v Speaker 1>breathing comfortably and talking. Technology does enable Neil to write

0:02:47.080 --> 0:02:50.680
<v Speaker 1>using his eye movements to form letters and words, and

0:02:50.720 --> 0:02:53.920
<v Speaker 1>now it's also able to recreate his voice from the

0:02:54.000 --> 0:02:58.440
<v Speaker 1>thousands of recordings over a life in the public eye.

0:02:58.600 --> 0:03:01.919
<v Speaker 1>To mark the publication of his new book, Neil wrote

0:03:02.120 --> 0:03:06.240
<v Speaker 1>answers to questions posed by the Australians Fiona Harari, and

0:03:06.280 --> 0:03:10.840
<v Speaker 1>then this remarkable text to speech technology brought his words

0:03:10.919 --> 0:03:12.079
<v Speaker 1>to life for us.

0:03:12.960 --> 0:03:17.720
<v Speaker 2>My book isn't about pretending everything's easy. It's about reminding

0:03:17.840 --> 0:03:22.200
<v Speaker 2>people that even in the toughest moments, you're not powerless.

0:03:22.480 --> 0:03:28.880
<v Speaker 2>You can choose courage, gratitude, responsibility, hope, connection, and those

0:03:29.080 --> 0:03:34.000
<v Speaker 2>choices made again and again can change your life. That's

0:03:34.040 --> 0:03:38.400
<v Speaker 2>the message I want to leave with people. Your circumstances matter,

0:03:38.760 --> 0:03:42.280
<v Speaker 2>but your choices matter more. Choose wisely.

0:03:44.360 --> 0:03:46.760
<v Speaker 1>Neil Dana has book which is out now is called

0:03:46.920 --> 0:03:49.040
<v Speaker 1>The Power of Choice.

0:03:49.720 --> 0:03:53.240
<v Speaker 2>If there's one thing I'd like people to take from

0:03:53.280 --> 0:03:56.520
<v Speaker 2>their story is that we all have more choice than

0:03:56.560 --> 0:04:00.080
<v Speaker 2>we realize.

0:04:00.200 --> 0:04:03.120
<v Speaker 3>In many, many years and quite a few decades of

0:04:03.520 --> 0:04:06.200
<v Speaker 3>being a journalist, I've never done an interview like this.

0:04:06.920 --> 0:04:10.080
<v Speaker 3>In retrospect, I probably went in way too naively.

0:04:11.680 --> 0:04:14.040
<v Speaker 1>Fiona Harari is speaking to the fronts.

0:04:14.200 --> 0:04:19.160
<v Speaker 3>Christen Amiot I've been wanting to interview Neil Danaherth the

0:04:19.160 --> 0:04:22.400
<v Speaker 3>Australian of the Year for some time, and it's coming

0:04:22.440 --> 0:04:23.920
<v Speaker 3>towards the end of the year and I thought it

0:04:23.920 --> 0:04:25.279
<v Speaker 3>would be a good time to try and do a

0:04:25.279 --> 0:04:28.800
<v Speaker 3>profile of him. And then fortuitously, he's just got a

0:04:28.800 --> 0:04:31.560
<v Speaker 3>new book out called The Power of Choice, which he's

0:04:31.600 --> 0:04:35.600
<v Speaker 3>written for his grandchildren with the expectation that he won't

0:04:35.720 --> 0:04:39.840
<v Speaker 3>live until they're adults, and he wanted to leave them

0:04:40.560 --> 0:04:42.760
<v Speaker 3>some of his thoughts on how to live a good life.

0:04:43.600 --> 0:04:45.800
<v Speaker 3>So I picked up this book and I started reading it,

0:04:45.880 --> 0:04:47.919
<v Speaker 3>and you know, being a bit of a cynical journalist,

0:04:47.960 --> 0:04:52.240
<v Speaker 3>I wasn't expecting much and I was really moved at

0:04:52.279 --> 0:04:58.000
<v Speaker 3>how pragmatic and practical and authentic this man is in

0:04:58.040 --> 0:05:02.160
<v Speaker 3>his view of life.

0:05:02.880 --> 0:05:06.240
<v Speaker 1>We asked Fiona to record the questions she asked Neil

0:05:06.279 --> 0:05:09.840
<v Speaker 1>danaher His answers are written by himself, but voiced by

0:05:09.839 --> 0:05:13.640
<v Speaker 1>an AI model created from real samples of his voice.

0:05:14.080 --> 0:05:18.200
<v Speaker 1>We stitched the two recordings together for you today.

0:05:19.040 --> 0:05:21.440
<v Speaker 3>What has your diagnosis taught you that you wish you'd

0:05:21.480 --> 0:05:22.799
<v Speaker 3>known earlier in life?

0:05:23.320 --> 0:05:25.960
<v Speaker 2>We all have our ways of shifting our own death

0:05:26.440 --> 0:05:30.240
<v Speaker 2>from our consciousness. We do so as a society as

0:05:30.279 --> 0:05:35.920
<v Speaker 2>well by isolating the ageed so the terminal diagnosis was

0:05:35.960 --> 0:05:39.479
<v Speaker 2>a sharp reminder that death is part of the cycle

0:05:39.560 --> 0:05:43.760
<v Speaker 2>of life and gives you a heightened appreciation of life

0:05:44.360 --> 0:05:47.240
<v Speaker 2>that you tend to take for granted when you're in

0:05:47.360 --> 0:05:50.039
<v Speaker 2>good health. And it also taught me the value of

0:05:50.120 --> 0:05:55.280
<v Speaker 2>slowing down. MND forced me to be present, and I've

0:05:55.320 --> 0:05:59.880
<v Speaker 2>realized how much meaning sits in the small, everyday man.

0:06:00.839 --> 0:06:04.960
<v Speaker 2>It's also sharpened my sense of what really matters When

0:06:05.040 --> 0:06:10.760
<v Speaker 2>life narrows. Your priority has become clearer. People, purpose and

0:06:10.800 --> 0:06:15.919
<v Speaker 2>contribution rise above everything else. And finally, it's given me

0:06:16.720 --> 0:06:21.440
<v Speaker 2>a deeper humility. You learn quickly that you can't control

0:06:21.520 --> 0:06:25.719
<v Speaker 2>everything and you don't need to. That acceptance has brought

0:06:25.760 --> 0:06:30.080
<v Speaker 2>a calm I didn't have in my earlier years. These

0:06:30.080 --> 0:06:34.039
<v Speaker 2>are lessons I came too late, but they've changed the

0:06:34.080 --> 0:06:35.080
<v Speaker 2>way I live now.

0:06:37.520 --> 0:06:40.000
<v Speaker 3>What I didn't realize when I sought to have this

0:06:40.120 --> 0:06:44.480
<v Speaker 3>interview was how incredibly restricted his life is and part

0:06:44.480 --> 0:06:49.560
<v Speaker 3>of the way in which he has promoted his illness

0:06:49.760 --> 0:06:53.000
<v Speaker 3>and been able to be involved with raising a staggering

0:06:53.040 --> 0:06:56.720
<v Speaker 3>one hundred and thirty million dollars for research towards an

0:06:56.720 --> 0:07:00.400
<v Speaker 3>illness in which there really wasn't much research being done

0:07:00.480 --> 0:07:04.479
<v Speaker 3>until the last few years. In some ways, it's sort

0:07:04.480 --> 0:07:08.640
<v Speaker 3>of hidden, I felt watching on TV watching videos. You

0:07:08.720 --> 0:07:11.440
<v Speaker 3>see him in a wheelchair, you see him smiling and

0:07:11.480 --> 0:07:15.520
<v Speaker 3>not speaking. But it's not until you get closer that

0:07:15.560 --> 0:07:22.240
<v Speaker 3>you realize this man is projecting really positive attributes, but

0:07:22.320 --> 0:07:25.160
<v Speaker 3>not in a sugary, saccharin way, in a very authentic way,

0:07:25.600 --> 0:07:28.320
<v Speaker 3>and he's doing it at a time where his life

0:07:28.400 --> 0:07:33.880
<v Speaker 3>is becoming increasingly constricted. So I approached his publisher and

0:07:34.240 --> 0:07:37.280
<v Speaker 3>they contacted him, and they came back some days later

0:07:37.320 --> 0:07:41.120
<v Speaker 3>and said, yes, he will do an interview. But he

0:07:41.160 --> 0:07:45.040
<v Speaker 3>can barely move, he can't speak anymore, and he requires

0:07:45.800 --> 0:07:49.760
<v Speaker 3>I Gaze technology in order to communicate. And the one

0:07:49.760 --> 0:07:52.640
<v Speaker 3>thing you notice straightaway is that although so many other

0:07:52.680 --> 0:07:55.040
<v Speaker 3>parts of his body is shutting down, his mind is

0:07:55.080 --> 0:07:59.560
<v Speaker 3>incredibly sharp. And the frustrations he must have had to

0:07:59.600 --> 0:08:03.040
<v Speaker 3>deal with watching so many parts of his body shut

0:08:03.080 --> 0:08:06.360
<v Speaker 3>down had he not had this technology, would have been horrendous.

0:08:06.960 --> 0:08:10.800
<v Speaker 3>But he's harnessed it in the most extraordinary way because he,

0:08:11.000 --> 0:08:14.920
<v Speaker 3>with the help of a publishing consultant, has been able

0:08:14.960 --> 0:08:19.160
<v Speaker 3>to produce this extraordinary book without being able to type,

0:08:19.200 --> 0:08:26.160
<v Speaker 3>without being able to talk, and really restricted physically, but intellectually,

0:08:26.200 --> 0:08:27.840
<v Speaker 3>he's just this extraordinary man.

0:08:29.480 --> 0:08:31.840
<v Speaker 4>Some of these lessons Obviously, being a football coach, it

0:08:31.880 --> 0:08:35.400
<v Speaker 4>was his trade to motivate people, to inspire people to

0:08:35.679 --> 0:08:37.520
<v Speaker 4>go out there and run into men the size of

0:08:37.559 --> 0:08:40.840
<v Speaker 4>fridges running at them in the other direction. Does he

0:08:40.920 --> 0:08:43.160
<v Speaker 4>even indication is that maybe some of these lessons he

0:08:43.240 --> 0:08:47.000
<v Speaker 4>might not have learned had he not been diagnosed with MND.

0:08:47.679 --> 0:08:50.080
<v Speaker 3>It's certainly been a catalyst. And he doesn't say he

0:08:50.120 --> 0:08:52.520
<v Speaker 3>regrets anything in his past. It's just reframed the way

0:08:52.559 --> 0:08:56.160
<v Speaker 3>he looks at things. So he's not at all preachy.

0:08:56.320 --> 0:09:00.160
<v Speaker 3>He from what I understand, was always a reader. But

0:09:01.240 --> 0:09:04.280
<v Speaker 3>he has spent a lot of time thinking since he

0:09:04.360 --> 0:09:08.200
<v Speaker 3>got this diagnosis, and he uses the word transcend a lot,

0:09:08.280 --> 0:09:12.120
<v Speaker 3>and he has managed to break through a barrier that

0:09:12.160 --> 0:09:15.000
<v Speaker 3>probably most of us who are not confronting what he is,

0:09:15.520 --> 0:09:20.800
<v Speaker 3>would not even contemplate. He has been able to look

0:09:20.800 --> 0:09:22.679
<v Speaker 3>at the flip side of many of the things that

0:09:22.720 --> 0:09:26.719
<v Speaker 3>we take for granted in life. So rather than why me,

0:09:27.120 --> 0:09:29.079
<v Speaker 3>he got to a point where he started thinking, well,

0:09:29.080 --> 0:09:31.960
<v Speaker 3>what next, and that sort of thinking is what inspired

0:09:32.040 --> 0:09:35.920
<v Speaker 3>him to set up Fight MND, this extraordinary charity that

0:09:35.960 --> 0:09:38.319
<v Speaker 3>he's set up that's helped raise one hundred and thirty

0:09:38.360 --> 0:09:43.960
<v Speaker 3>million dollars for research in Melbourne. The Big Freeze is

0:09:44.679 --> 0:09:47.040
<v Speaker 3>a huge part of Melbourne's winter these days. So that's

0:09:47.120 --> 0:09:51.679
<v Speaker 3>when on the King's Birthday weekend at the MCG celebrities

0:09:51.720 --> 0:09:56.439
<v Speaker 3>turn up and dress up and slide down into this

0:09:57.400 --> 0:09:59.160
<v Speaker 3>freezing cold pool of ice.

0:10:00.679 --> 0:10:02.240
<v Speaker 4>Two one go.

0:10:05.360 --> 0:10:08.439
<v Speaker 1>And she goes trying to keep the face out of that.

0:10:08.520 --> 0:10:10.240
<v Speaker 3>One's told she said, look at.

0:10:10.120 --> 0:10:13.120
<v Speaker 1>That, she's duck padling to try and get out as

0:10:13.200 --> 0:10:14.719
<v Speaker 1>quick as she can. You wouldn't believe it.

0:10:15.040 --> 0:10:17.720
<v Speaker 3>And in June when it happened this year again, he

0:10:17.760 --> 0:10:20.520
<v Speaker 3>was already quite unwell then and he got a standing

0:10:20.559 --> 0:10:23.160
<v Speaker 3>ovation pretty much from the eighty five thousand strong crowd.

0:10:25.800 --> 0:10:28.040
<v Speaker 3>But the other thing was really noticeable was that an

0:10:28.200 --> 0:10:30.680
<v Speaker 3>enormous number of these people had blue beanies on. And

0:10:30.720 --> 0:10:34.680
<v Speaker 3>the blue Beanies, I understand that the side of them

0:10:35.040 --> 0:10:37.480
<v Speaker 3>has become even more than the Big Freeze event itself,

0:10:37.880 --> 0:10:41.240
<v Speaker 3>a quintessential Melbourne winter site these days. People wear them

0:10:41.240 --> 0:10:44.320
<v Speaker 3>everywhere and I understand that those sales as well, are

0:10:44.360 --> 0:10:47.440
<v Speaker 3>contributing to the money that they're raising for research. He's

0:10:47.480 --> 0:10:49.600
<v Speaker 3>obviously not the first person to raise money for modern

0:10:49.640 --> 0:10:51.960
<v Speaker 3>your own, but I think it's fair to say he

0:10:52.280 --> 0:10:56.160
<v Speaker 3>has focused way, way more attention on it than anyone

0:10:56.160 --> 0:10:59.560
<v Speaker 3>else has been able to so far. He knows that

0:10:59.679 --> 0:11:02.920
<v Speaker 3>he won out livers, but he truly believes that it's

0:11:02.960 --> 0:11:05.200
<v Speaker 3>possible to find a cure. At the moment, there's no

0:11:05.240 --> 0:11:07.880
<v Speaker 3>known cause, and there's no known cure.

0:11:12.320 --> 0:11:37.280
<v Speaker 1>Coming up. More of Neil Danaher's wisdom.

0:11:37.520 --> 0:11:39.679
<v Speaker 3>Your mind seems to be one of your great strengths.

0:11:40.000 --> 0:11:41.319
<v Speaker 3>Have you changed the way you think?

0:11:42.320 --> 0:11:46.200
<v Speaker 2>Yes, I've changed the way I think in some important ways.

0:11:46.800 --> 0:11:50.800
<v Speaker 2>Vulnerability is a big one. Another shift has been around beliefs.

0:11:51.120 --> 0:11:54.040
<v Speaker 2>In my younger years, I could be pretty black and

0:11:54.080 --> 0:11:57.720
<v Speaker 2>white in my thinking. Yeah, once I formed an opinion,

0:11:57.760 --> 0:12:00.920
<v Speaker 2>I held it tightly. Now I understand and the importance

0:12:00.960 --> 0:12:05.200
<v Speaker 2>of updating your beliefs, asking more questions, and staying open.

0:12:06.080 --> 0:12:11.640
<v Speaker 2>Stubbornness isn't strength, curiosity is. And I've changed the way

0:12:12.240 --> 0:12:15.800
<v Speaker 2>I think about challenges. For a long time, like many people,

0:12:16.240 --> 0:12:19.720
<v Speaker 2>I saw setbacks as things that happened to me. Now

0:12:19.760 --> 0:12:23.040
<v Speaker 2>I try to look for the opportunity inside them. That

0:12:23.200 --> 0:12:28.160
<v Speaker 2>mindset shift from why me to what now has made

0:12:28.200 --> 0:12:31.760
<v Speaker 2>all the difference. It doesn't remove the hard stuff, but

0:12:31.880 --> 0:12:34.960
<v Speaker 2>it gives you a way to move through it with purpose.

0:12:35.080 --> 0:12:37.880
<v Speaker 2>So yes, my mind is one of my strengths. But

0:12:38.040 --> 0:12:42.120
<v Speaker 2>it's grown stronger because they've been willing to rethink old

0:12:42.280 --> 0:12:55.640
<v Speaker 2>ideas and choose better ones along the way.

0:13:00.080 --> 0:13:02.520
<v Speaker 1>Rari is a senior journalist with The Australian. You can

0:13:02.559 --> 0:13:05.480
<v Speaker 1>read her story right now at The Australian dot com

0:13:05.520 --> 0:13:09.240
<v Speaker 1>dot au and Neil Danaher's book, The Power of Choice

0:13:09.559 --> 0:13:10.679
<v Speaker 1>is in bookshops now