Julie Fisher · 57 min
Before her son Darcy was even born, Julie Fisher put on her advocacy hat, and nineteen years later she has turned a prenatal Down syndrome diagnosis into five books, a weekly radio show, and an annual disability expo that are changing how Australia sees inclusion.
Hear this story
Before Darcy was born, Julie Fisher was already advocating for him. A chance friendship with another mum whose daughter has Down syndrome sparked questions about what that life would look like. During her first ultrasound at 15 weeks pregnant, the sonographer's measurements told the story Julie half expected. She chose to have an amniocentesis and got the confirmation the next day. Over the following months, doctors repeatedly raised termination as an option despite her clear statement that she wanted to keep her pregnancy. But Julie had already joined a support group of other mums with children who have Down syndrome, and their presence lifted her up and showed her the brightness of the world ahead.
When Darcy arrived five weeks early, he came screaming into the world with strong lungs and no complications. Julie's older boys treated him like any other sibling, arguing with him and including him in their busy lives without special treatment. Through primary school, Darcy spent four days a week at specialist school and one day at mainstream, completing every camp and event alongside his peers. High school became full-time specialist education, where he later became school captain. Along the way, Julie learned something crucial: her own defensive reactions to strangers' stares were affecting how Darcy felt about being in public. When she shifted her behaviour and started smiling back at people, she discovered most weren't judging at all.
Nineteen years into motherhood, Julie has turned that early advocacy into five books, a weekly radio show, and an annual disability expo that are changing how Australia sees inclusion. She speaks about real, concrete inclusion: the brightness of the lights in a room, the height of a bar, accessible change facilities for adults, automatic doors. Most importantly, she shares a simple conviction that guides everything she does. Give people a chance and watch them shine.
“I got my advocacy hat on and, you know, was advocating for him before he was even born and before I even really knew what that word meant.”
“He entered the world like a rock star and he still lives his life like that now.”
“It almost got to the bullying stage of that before I yelled at them both at about the 25 week mark that I wasn't terminating.”
The hero, today
When you give people a chance and accept them for who they are, you will see them stand tall and shine, whether that's catching a bus for groceries or pursuing something bigger. Getting a diagnosis for your child feels lonely and scary, but surrounding yourself with other families living the same thing, like the support group Julie joined while pregnant, lifts you up and shows you the brightness of the world you're heading into. Treating a child with a disability the same way you treat any other child, letting siblings argue with them, not giving special treatment, including them in ordinary family life, helps them become confident, social, and comfortable being themselves. Shift your own behaviour in public first, because if you react defensively to people's stares, your child will pick up on that negativity and start not wanting to come out into the community at all. Support really matters when you're entering the world of disability, lean into it, have coffee with people, have a cry, get strategies, because there are good people out there and the ride becomes wonderful when you let them help you. Businesses and schools say they are inclusive, but real inclusion means noticing the small things: the smell in a room, the brightness of the lights, accessible change facilities for adults, lower bar heights, automatic doors, not just ramps.
Yes. Julie Fisher is a real person who shared their own story in their own words. Kintsugi Heroes is a not-for-profit that shares first-person stories of overcoming adversity, told with the person's consent.
Kintsugi Heroes, a registered Australian not-for-profit. Every story is shared with the hero's own consent and reviewed under Kintsugi Heroes' trauma-informed content standard before it goes public.
When you give people a chance and accept them for who they are, you will see them stand tall and shine, whether that's catching a bus for groceries or pursuing something bigger.
Getting a diagnosis for your child feels lonely and scary, but surrounding yourself with other families living the same thing, like the support group Julie joined while pregnant, lifts you up and shows you the brightness of the world you're heading into.
Treating a child with a disability the same way you treat any other child, letting siblings argue with them, not giving special treatment, including them in ordinary family life, helps them become confident, social, and comfortable being themselves.
Daniel Dougherty (Host) · 00:02
Across Australia, powerful stories of resilience, strength, and courage go unheard every day. Golden Threads: Stories of Disability and Resilience is here to change that. Hosted by me, Daniel Doherty, Golden Threads brings you honest and deeply personal conversations that invite you to explore what it means to adapt, persevere, and thrive in a world still learning what inclusion really means. Hi and welcome to another episode of Kintsugi Heroes. Our hero today is Julie Fisher. Julie Fisher is somebody who we're really, really excited to talk to. She is an advocate, she's a community organizer, she's an author, she is a motivational speaker, she is a mother, um, and just all-around great human being. When it comes to the limits of what a mother's love can do for somebody and do for life, well, don't ask Julie because she doesn't know what the limits are of that. She's blown past those limits, and we want to find out what some of those things are. Julie, welcome to the conversation today.
Julie Fisher (Guest) · 01:08
Oh, thank you, Dan, for having me today. I'm really excited to speak with you.
Daniel Dougherty (Host) · 01:12
Yeah, excellent. Uh, this story is about you and your journey, um, some of the things that, uh, you've not only accomplished, but the movement that you've created and the lives that you've impacted. But let's start back of— where do you want to start the story today? Let's start back some years ago, but where do you want to start?
Julie Fisher (Guest) · 01:30
Well, we can start from the beginning if you like, and, um, you know, it could take hours, but no, it won't. It doesn't need to. Um, but before I start with where it all started with us, a couple of years before I got pregnant with my son Darcy. I met a lady called Tina, and she has a daughter with Down syndrome, and our eldest kids went fast together. Now I'm adding this to the beginning because, um, it's the universe setting me up for what was to come, which I didn't know about. Tina and I became friends very quickly, and I was fascinated by Amy. I'd never met anyone with Down syndrome. I didn't know a lot about it, so I used to ask her lots and lots of questions about Amy because Watching her in the playground, I could see that she was just like all the other kids, even though she had Down syndrome. And, you know, I didn't know that. So one of the questions I asked her was, what was it like getting a postnatal diagnosis after Amy was born? And she described it as, you know, very hard and emotional and very difficult. You know, they weren't ready for it. And each time they thought they were sort of coming to terms with things and starting to get a bit of a grip on it, someone would visit and they'd be crying and it would start the emotions all over again. And I remember walking home that day thinking that if something like that happened to me, I'd want to know because I didn't— I wouldn't want people walking into the hospital room crying over a baby that's just been born. So I walked home thinking that, but we weren't planning on having any more children at that point. And then 2 years later, I became pregnant with our third child. And when I had the first ultrasound, the sonographer, I think that's what you call them, he kept measuring the skinfold on the back of the neck. And because of Pena, I knew that that was a marker for Down syndrome. So I asked him if he thought my baby had Down syndrome and he said he couldn't say. He said all the organs inside the baby looked perfect and very healthy. He was just checking his measurements of the skinfold on the nuchal fold, I think it's called, on the back of the neck because the measurements were quite high, but they weren't over what, what they say. So he said to me that day that if they're over 3mm, then more than likely the baby has Down syndrome. And Darcy's measurements were 2.9. So he couldn't say for sure, but he wouldn't say for sure anyway. He told me that if I wanted to know, The only way back then was an amniocentesis, and I'd be best to go to an obstetrician and get a second opinion, which is what I did. I went to the obstetrician that I had with my older two boys, and I walked in and I said, I think my baby has Down syndrome, and my husband and I have discussed it and we want to know. So he goes, well, hold on, hold on, let's just do an ultrasound first and have a look. And he said the same thing as the other guy. He said everything looked good. But if we wanted to know, then he could do the amnio right there and then, and the baby was in a very safe position for him to do that. So I did that. Now, I was 15 weeks pregnant, so he rushed the results through, and I got the phone call the following day. When we got the phone call, even though I thought I was really strong and ready, it was very emotional because we still I didn't know what that looked like for our family, you know, and hearing that, just hearing those words was a little more raw than what I thought it would be. And then we had to deal with, you know, telling the family and friends, and of course with all the misconceptions and outdated things that go around still about Down syndrome, we had to sort of deal with all of that as well. And then I also had to deal with 5 more appointments with 2 doctors telling me about termination. It almost got to the bullying stage of that before I yelled at them both at about the 25-week mark that I wasn't terminating. But when I think back now, I think they probably didn't get it in their heads that we wanted to find out so that we could learn and get prepared. I think probably their past experiences where people would terminate once they got that diagnosis. So I give them a little bit of leeway there now, but at the time I was very angry because I had told them that we weren't terminating.
More stories
This site is part of Kintsugi Heroes. Visit the main site for the full podcast. If any of these stories hit close to home, support is out there, you don't have to sit with it alone.
Read how we handle these stories ↗
Kintsugi Heroes · Registered Australian not-for-profit · kintsugiheroes.com.au ↗
Shift your own behaviour in public first, because if you react defensively to people's stares, your child will pick up on that negativity and start not wanting to come out into the community at all.
This conversation includes meeting tina in the playground, the nuchal fold measurement, the amniocentesis and the phone call, doctors pushing termination, the advocacy instinct kicks in and darcy arrives screaming.
Daniel Dougherty (Host) · 05:48
I was just, I was just curious, back, uh, since we are talking about those, uh, the very early, uh, time of Darcy and, um, getting that diagnosis, uh, just what was the attitude like of not only we talked about the medical, uh, your medical advice that they were pushing, uh, but what was, uh, the feelings from your family, from your friends, but anybody that was, uh, close to you, whether you liked them or not, that's irrelevant. But what was the feeling like, and what was it like having a child with Down syndrome?
Julie Fisher (Guest) · 06:22
It was a bit mixed. Like, probably quite a few of our friends were very supportive. A few of them have told me now, many years later, that they were still very worried, but they wanted to support us, so they, they were very supportive. And others would say things like 'Oh, do you know much about Down syndrome? Like, he's never going to amount to anything. It's going to be hard on the other kids. How are you going to keep up with all of their activities?' And I did worry about things like that because I didn't know what it was going to look like when this little baby arrived. But I, you know, got my advocacy hat on and, you know, was advocating for him before he was even born and before I even really knew what that word meant. So, you know, telling everybody that it was going to be alright. And the other good thing was Tina was running a support group back then as well, so I was able to join that support group while I was pregnant. So every fortnight I would walk into her house and I'd be surrounded by, oh, probably about 10 mums with kids with Down syndrome of varying ages. So I walked in there and I could ask them whatever I wanted. And it was really wonderful and refreshing. So I had them as well. So even in the moments when I was feeling doubtful and worried and emotional and angry about certain comments, they would lift me up and I could see the brightness of the world we were heading into. So it was nice.
Daniel Dougherty (Host) · 07:55
Yeah, absolutely. And you said that you put the disability, or you put the advocacy hat on. Even before Darcy was born, from a mother. I'll never be a mother, so I can't relate to this, but where does that come from? What does that look like? And how does that advocacy at that early time come out to play? How's that? Just describe that advocacy early on from a mother's perspective.
Julie Fisher (Guest) · 08:23
Yeah, I think it's just defending your child and The feeling comes right from inside your gut. You know, you want to defend your child and you want to let people know that it's going to be okay and he is worthy of joining us earthside just as much as anybody else. But I think, you know, there's a little bit of anger, frustration, all of that sort of stuff all rolled into one. And it does, it comes right from the gut and it just comes out. Sometimes you can hold it back a little bit and you can But other times it just comes right out.
Daniel Dougherty (Host) · 08:58
I think that's refreshing in life. We all have emotions. Those— yeah, and we try to figure them out as we go. But there's just something to me. There's just something unique and something very precious and sacred about just a mother's advocacy. Right. Because it does go so deep and it's so genuine and pure for— I want the best for my child. And so for that advocacy that just is rooted in something that so many other advocates will just never have, and it's not a critique, it's just a, to me, just a fact of life and the importance of a mother's advocacy for their children. What happens after that? Because Darcy is born, you get that diagnosis that yes, he does have Down syndrome. And all the realities that go with that.
Julie Fisher (Guest) · 09:51
Yeah, yeah. So because of the mums that I was in, that I was part of, I actually— the poor child, his whole primary school life was mapped out before he was born as well, because I was listening to all the different things that these ladies were doing. But I was able to learn about what life was going to start looking like. I booked him into early intervention because we had a date, so he was on the, on the waitlist very early before he was born. I thought that was a real positive to be able to do that. And then when he came out of hospital, he started early intervention a week later, so he was 5 weeks old when he started that. So it was really good because I could really sort of start to map things out. And then, you know, there was mums there whose Down syndrome children were second and third kids, and I could see that because, you know, there's always that thing about the third child gets sort of dragged up and they're very chilled and relaxed because they're used to getting dragged from pillar to post. And these guys were like that too. And so I thought, hmm, you know, maybe everything is going to work out okay. And Darcy's personality is very much like that. And when he was born, you know, I was doing a lot with my other boys with their sports and things like that. So he was born into a world full of community and full of people and He's still very social and very chill, you know, he doesn't mind if I say, "Come on, we're going here, we're going there." He just gets up and does it, and he was the same as a baby. But he was a little impatient. He came into the world 5 weeks early, which disrupted things a little bit. And we were very worried about him because he was 5 weeks early, Down syndrome, and he's 19, so when he was born It wasn't common back then to have a prenatal diagnosis, so everyone was very interested to see this young man come into the world. So every doctor, every nurse, every specialist had students with them in the room as well, and we were all waiting with bated breath to see how he would enter the world. You know, would he need support for his lungs, all of that sort of thing? Was there going to be any other complications? Nobody really knew. So, but when he was born, when they lifted him out, he actually came out screaming. So he entered the world like a a rock star and he still lives his life like that now. So it was actually, it was really beautiful and very, we were very relieved because he didn't need assistance. He had strong lungs right from the start, even 5 weeks early and he was this tiny, tiny little baby. But it was wonderful, it was a beautiful moment. And when I looked at him, he looked very wise to me when I looked in his eyes, it was quite interesting actually.
Daniel Dougherty (Host) · 12:33
That is very interesting. And I'm really curious too about the family dynamics. We're talking about Darcy here, but you had two other boys. You were still a young mother yourself, and what were the— so Darcy took a lot of your focus, of course, but what were the other activities that would go on in the family life as Darcy was brought up? You said he experienced community. He was dragged from here to there, and that's just part of— sounds like he was just included with whatever was going on. Is that the case?
Julie Fisher (Guest) · 13:09
Yes, definitely. And the boys, I think having the prenatal diagnosis was good because the boys could learn as well, and they were excited to have him join the family. And, you know, they were really good helpers. They were 9 and 6 when he was born, so there's a little bit of an age gap there, but they were very, very helpful. They helped with baths. They helped, you know, play with him, keep him amused, but they were very busy boys with basketball, football, school, birthday parties, and I was also running the local Auskick Clinic, so we just kept being busy. And when Darcy was in hospital, because he was born early, he had 3 weeks in special care. What I would do was spend the whole day with him while the boys were at school, and then I would spend the the afternoons and the evenings with them so that they didn't miss out and they didn't miss out on me as well. I didn't want them to think that all of a sudden this baby was here and he was taking me 24/7. I wanted them to still feel like they had their mum doing the same things she was doing before he was born. So I think it worked out pretty well back then, and they've got a real protective instinct with him now too. They, they love him to death. They've both got different sort of relationships with him, and it's quite fun to watch. They've, they've, you know, stirred him up, they've argued with him, they've done all the normal things that siblings do, and I really like that. I sometimes, I used to find myself, instead of sort of intervening, I'd just sit back and watch it for a little while because I thought, this is so normal and I love it. You know, they weren't giving him any special treatment just because he had Down syndrome. If he was annoying them, they let him know.
Daniel Dougherty (Host) · 14:53
I think that's a really healthy way of, yeah, of helping them experience life. I guess we all do the best that we can. We don't necessarily know going into it, but just treating them, yeah, as you would other people. They don't get special dispensations, they don't get special treatment. But they are included, they're encouraged, they're allowed to be themselves. I think it's really fantastic. So yeah, so what, where do you want to take the story from here? So we know now about his birth, being brought into the earthly world, and then, you know, where do you want to go from here?
Julie Fisher (Guest) · 15:34
Yeah, well, you know, life was very busy, I guess, and, you know, all the boys were growing very quickly, and before we knew it, Darcy was starting school. We did dual schooling through primary school, so he was 4 days a week at a specialist school and 1 day a week at the mainstream school that his brothers went to. We didn't know what that was going to look like at the very start, we just took each year as it came, but he completed the full 7 years there and graduated. He did all the camps, he did all the incursions, all the specialty days, and with each of those came a lot of advocacy as well. 'Cause each time there would be at least one teacher who wasn't sure how he would go, so I would have to answer a lot of questions and, you know, assure them that I wouldn't put him forward if I didn't think he could cope. And he always had his assistant with him. He had an amazing assistant that still works with him now sometimes. And each time he would change perceptions of people because he would show them that he was quite able and capable of doing the same things as the other children. And he, you know, as I said, he had his assistant with him, so if he did need support, she was there all of the time. And then primary school years ended. We did investigate our local high schools to see if we could do the same thing. However, the funding wasn't going to be there for him. One of the schools said we would be lucky to get 2 hours worth of funding, and the high schools, the public high schools around our area are very big. And I just couldn't do it. I thought, "No, I can't." The first 2 years may have been alright because his friends would have looked after him, but I know what happens at high school, you know, friendships change, dynamics change, groups change, and I just thought, "No, we just can't do it. It's too hard. He needs support both inside and outside the classroom." So he transitioned to full-time at his specialist school And he thrived. He loved it at that school. It was an amazing school. And his final 2 years, he was vice-captain the second last year and school captain the last year. So that was very exciting. He was very, very proud to, you know, be in that position for his school. And then school finished, I guess, and that was a big transition because 15 years at one school was a big big, big change, but he's transitioned really well. It's taken a little time. His first year out of school, he does two different programs. One of them is a performing arts program that he's been part of for quite a few years anyway, and the other one is at a working farm near us, and he does different, different activities each semester so he can learn different skills, and that's sort of what we want to do. We want him to learn some different skills And then maybe in 2 or 3 years we can say to him, is there something that you really like doing the most? And if it's a skill that requires employment, supported employment or something like that, then we'll start looking at things like that. But I think we'll give him a couple of years at this particular place and he can make his own mind up once he's a little older. Because if you say to him now, what do you want to do? He just looks at you, or he would be I'm quite happy here on the couch with my iPad. So, and we can't do that just every day, day in, day out. So we've chosen those things for him.
Daniel Dougherty (Host) · 18:58
Yep, but most people his age, I know, yeah, diagnosis, no diagnosis, upbringing, et cetera, doesn't really matter if somebody that age is given the choice to sit there with their iPad and sit on the sofa. And I think, I think Darcy's lived a really fulfilling life. He's had a lot of opportunities. I mean, he's experienced a lot that life has to offer. And at this point, up to the point between his schooling or even birth and now, are there any major areas that you think you would pivot on and possibly do different? Not regrets or anything, but is there anything that you'd say, look back and just say, oh, if we would have done it that way, I wonder what would have happened?
Julie Fisher (Guest) · 19:46
Yeah, look, sometimes I wonder whether we should have tried mainstream full-time. Sometimes I do wonder that, whether that may have helped him with his speech. He is verbal, he can talk, but he is difficult to understand sometimes. And a couple of his friends did full-time mainstream primary and secondary, but then they moved away at about that Year 9 mark because they started getting bullied at school. So occasionally I do wonder what it would have been like if we had have done full-time. But in saying that, I am very happy with the decision that we made because I think he was able to experience everything that his brothers did. It never— it was always exciting for him to go every week to the mainstream school And it was exciting for the kids, so they called it Darcy Day, and they really looked forward to that day. So I think it was good because I think if maybe he was full-time, some of those kids might not have enjoyed him being there as much if it was 5 days a week. I don't know, you don't know, but I do wonder sometimes. I do worry about him a lot still. I worry about the future. But then when I reflect on what I'm worrying about, it's other people that I'm worried about. Because he's, you know, he's quite confident, he's very social, he loves to go out and enjoy, you know, basketball and all sorts of things that we all like to enjoy. So I do worry about other people taking advantage. I think that's because he is vulnerable. But I guess, you know, when you talk to people with older children. Their kids are doing quite fine, and I think the world is getting better and better all the time, and people like Darcy are being more and more accepted. So, so that's good. But I think the worry just comes from that motherly instinct and fatherly instinct again, you know. You, you just worry about your kids, and if they are a little vulnerable, the worry is a bit escalated. So yeah, I don't, I don't think, I don't think I would change anything that we've, that we've done. So far, I think everything's worked out quite well. I may have pushed my older kids to do some sibling camps, maybe, when they were a bit younger. They never wanted to do them, but some friends' children did them and they got a lot out of them. And I know a couple of people that run support programs for young carers, and I think it would have been beneficial to them. Not that anything's wrong now, but I just think that they may have felt a bit more supported with other— meeting other kids and other young parents.
Daniel Dougherty (Host) · 22:27
Yeah, absolutely. And going through this process, your family has done a phenomenal job, including Darcy, rallying around each other, supporting each other. It takes a community, it takes a family working together. What was the attitude of the community? What do you experience taking— when Darcy goes into the community, both as a kid, but maybe even now, how do people look at him? How do they engage with him? How do they either treat him differently or maybe they just, they don't, but what's that experience of going out with Darcy and what's the difference in the community?
Julie Fisher (Guest) · 23:08
Yeah, it's very, it's mixed. It's like when we go to places like to a concert or to a theater, the staff are always, they're amazing. They don't make him feel like he's standing out, like they're giving him preferential treatment, but they always will look over and, "Do you need anything?" You know, "Do you need to come in first?" Because of the crowds and things like that. They're always very engaging and very, very helpful. Without making it look like they're giving him special treatment, which is great. The general public, when we're out and about shopping or even going to the concerts, going to the movies, it's a little bit mixed. Like, we still get the hard and fast stares, but we also get lots of smiles and lots of hellos as well. When I first started taking him out in the community, my defence mode went into overdrive when people were looking at him. I immediately decided that they were being judgmental and staring, and I used to react, and it wasn't nice. I used to come home in a bad mood, and my husband used to say things like, "How do you know they weren't looking at him because he's cute?" And I would say, "You didn't see the way they looked at him. They're not doing that at all." And I was, you know, that mama bear kicks in. But then as Darcy became—
Daniel Dougherty (Host) · 24:34
Sure, you may not have been wrong, but you don't know.
Julie Fisher (Guest) · 24:37
Well, I've learned as the years have gone on, as he got older, he started to feel that reaction and he started to feel the negativity of it all. And I thought, I can't do this. I don't want him to not want to come out into the community. So that's when I started smiling at people and sometimes saying hello. And most of them smiled back. So, you know, I did learn really quickly that a lot of them weren't staring, they were just looking at him and— or looking at me. Like, I don't know, I'd never noticed people looking my way before until I took Darcy with me. So that was quite interesting. So I did, I did learn very quickly that most people are not being judgmental, and the people that were being judgmental, when I smiled at them, they would look the other way and sort of run off in the other direction because I'd caught them. So, and it was refreshing for me to, to, to learn that, you know. And now, now that he's 19 and, you know, we've been traveling the journey together for so long, you can really tell the difference between a look and a stare. Um, and we still get them. We don't get so many comments anymore. We used to get comments and points and things like that when he was a bit younger. Whether I just don't notice them anymore, I'm not sure. Whether I sort of just decide, well, they're not worth it and just keep going, I'm not sure. But I noticed someone staring at him really hard and fast the other day as well, and I looked at Darcy to see if he was doing something strange, and he wasn't. We were sitting there having a meal and he was just eating his food, and I looked at the gentleman with a puzzled look on my face, and he sort of Oh, oh, he caught me. I didn't know where to look. So we still get it. I, I don't get so upset about it anymore because there's lots of reasons why people can be doing that. Sometimes, you know, it's that fear of something they don't understand. Sometimes it's curiosity. Um, and I, I always say to people when I speak and in my books, you know, if you want to come and say hi, say hi, and if you want to learn something, ask a question. You know, if you don't know, ask questions because that's the way you're going to learn and that's the way we're going to create more acceptance for everybody, I think.
Daniel Dougherty (Host) · 26:49
I think that's a really good approach. And going through that, when you're in that situation and your situation, Darcy's situation, your family's situation, it can be uncomfortable. But yeah, you really have an opportunity there to open that up to discussion or to dialogue or to, you know, if you are curious, yeah, we could help you with that. If you're trying to be mean or be a bully, well, that's a different story. I don't have time for that. But yeah, just for conversation, for knowledge sharing, for you've never experienced somebody that's either different or somebody that has Down syndrome, yeah, sounds like you would be a really great place for they to initial interaction. I mean, just saying that is a— I really like hearing that you actually put that into words and say that in your books.
Julie Fisher (Guest) · 27:41
Yeah, well, that's how, that's how we learn. And you know, it's the way we learn. And, and a lot of the stuff is fear-based. A lot of the time people don't know how to react, like, or act in front of people, um, that they don't understand or that have a disability. They don't know if they can say hello. They don't know if they smile, or, you know. So that's, you know, another reason why all of the stuff that I do creates that education. And I also remind people that we're all different anyway. Like, every single one of us on the planet is different. So, you know, why—
Daniel Dougherty (Host) · 28:17
yeah, yeah, that's, that's so true. And I, I'm so, I'm so thankful there's not multiple, uh, Daniel Doherty running around out there. I would, uh, see I tell my partner, I'm glad she likes me because I drive myself crazy. If I had to live with myself, I'd be so annoyed with me. But I'm glad that there's other people out there that are different.
Julie Fisher (Guest) · 28:38
People forget that, I think. And when you sort of say that and you put it in perspective and you say, oh, well, you know, we all have quirky little habits too. We all, you know, say funny things, do funny things. Darcy's no different, really. He has a visible disability and, you know, You know, everybody is different and I love that. Imagine if we were all the same, how boring would that be? So boring.
Daniel Dougherty (Host) · 29:01
So boring. I'm really, really curious as well, Julie, from your experience now of 19 years being a mother to a child with Down syndrome and now a young man with Down syndrome, what have you learned or what has been reinforced by having a child with Down syndrome, which might be different from your other two sons? What has it reinforced or, you know, completely something new that you've learned from that experience?
Julie Fisher (Guest) · 29:35
Lots of things. He's a big teacher for all of us. You know, he's taught us the real meaning of inclusion and acceptance of others because he doesn't care. He doesn't care what you look like. He doesn't care if you've got green hair or one eye or talk a bit funny or walk a bit funny. If he likes you, you're his friend, and I love that. I think that's really beautiful. He's taught us to have patience, that if something doesn't work the first time, it doesn't mean it's not going to work. We can try again, and it doesn't matter how long it takes. He's brought back a— well, not that we never had fun, but I think, you know, like, he's quite an entertainer and he just brings back that real pure sort of fun. And with all of us, you know, we all really love it. He makes us laugh. He keeps us all pretty grounded as well. We call him the glue to the family quite often. And yeah, I can't even imagine life without a person like him in it anymore. He really shows us to not worry about what other people think as well, like really truly, really truly not worry about what other people think because he does that and you know, the pride that we all have when we see him shine is just wonderful. And, you know, sometimes he has to try a bit harder to reach a goal or fulfill something, and he doesn't give up. You know, sometimes he might, but then he'll give it another go. He'll give it a red-hot crack. And the older he gets and the stronger he gets, the more braver he is to try things that he hasn't succeeded at yet. So, you know, he's kicked some pretty good big goals over the last couple of years. Escalators, barber, like all sorts of things, dryers, you know, the hand dryers in the bathrooms. He wouldn't go near any of those things before, but the last couple of years he's conquered those fears and done it. And I love that, you know, it just shows don't ever give up.
Daniel Dougherty (Host) · 31:51
Right. What I love about your sharing of Darcy's story and these things that these life lessons is I think for majority of the population, we could say, well, we don't really care what people think, or we could say that, um, you know, I'm just gonna have fun and I'm just gonna, you know, just force through it and I'm just gonna have fun. But we have these obstacles, and I think it's part of these— part of the human condition for many people is there is a layer of complexity that it's really hard for us just to have genuine fun as an adult. Um, another thing that we— myself included— I care what people think of me. I care what my image is showing. I care how others are reacting to what I do.
Julie Fisher (Guest) · 32:38
Yeah.
Daniel Dougherty (Host) · 32:39
Um, it doesn't mean it drives everything that I do, but I care, and I try to drop it. But it takes people like Darcy for me to be around to show me or to demonstrate, not just to show, but to really model that, yeah, it's not that scary to let people know what you're really thinking. It's not that scary to just have fun, let your guard down, to just have fun. Who cares what people are, are doing or thinking about your fun, right? Um, and so to me, it's more so than just reading about it or knowing it, but to having somebody experience that in front of me or next to me, I think is really powerful. And something very beneficial to me. So I really have liked hearing you say those things about him.
Julie Fisher (Guest) · 33:22
Yeah, yeah, he's an amazing young man. So he brings a lot to the family, that's for sure. He finished our family off perfectly.
Daniel Dougherty (Host) · 33:33
Excellent, excellent. So with Darcy in his life, you've learned a lot, but you've been sharing a lot too. I know that you've done speaking, motivational speaking. You've done keynote speeches. You've done community events like the disability— you have the Disability Expo that you do, that you host every year. You have now a few books that are out on this topic. So a couple questions about that. One, when did you get started sharing this information in a way that others could access it? And then number 2, is there a big plan about all this, uh, context and all this content?
Julie Fisher (Guest) · 34:21
Yeah, well, well, you know, the other thing that Darcy did was help me realize my dream of becoming an author. I'd wanted to be an author from high school age, never knew what that was going to look like, never knew what I was going to write about. And then at the age of 50, I wrote The Young a journey. It was interesting, the question that you just asked, like, when did it all start? But when I wrote that first book, for me, that's where it all started, sharing the journey on a bigger scale and things like that. But, um, I actually work for the publishers that I do my books with, and my boss shared with some of the other authors yesterday about when I did my first book and we did the pre-launch campaign. And she said, here was this Julie, not a businesswoman, not not writing a business book, just filling a bucket list item, got the most pre-sales at the retreat that we had. And she goes, and the reason why is because she had always shared her journey on her social media with her son. So she had all of her friends that were following, and when she said she was writing a book, they all supported. So I guess it really started before I even realized it was starting. But for me, it started with that first book, and when that first book got published, the first bit of interest I got from outside was from Carers Victoria. They asked us to do a campaign with them, and from that moment I could see that my message was, was important and good enough to get out there on a bigger platform. So I started saying yes to things like the campaign and And then COVID hit and we all got locked up at home, but I started attending a lot of events online and started my speaking journey on Zoom. So I got asked if I would be a guest speaker at, you know, with different organizations— Down Syndrome Vic, Carers Vic, Carers Australia— and I just said yes and I did it and I really enjoyed it. And I enjoyed the questions people were asking me and I just enjoyed sharing the story because I could see that it was providing support for other families. It was providing education for the wider public, and people really were interested. And over the journey, I've met some amazing people that I've collaborated with as well. And then 2021, the second book, The Magic of Inclusion, came out, and that's all about the importance of people feeling accepted in their communities and when they go out. And through COVID, I met some amazing women around the world as well. I met some lovely mums in England and America, and I wrote From the Hearts of Mums, which is an anthology of 13 different stories of mums with children with Down syndrome. It's beautiful. I'm very proud of that book. All of the stories are very raw and honest, and I recently won a gold award for that book. Then I threw out a little children's book called Big School. Which had been written for years and years and years and was just on my computer. So I published that one. And then most recently, I've just published The Adolescent Journey, which— embracing the beauty of the teenage years. So picking up from the end of the first book and just going through the years of his journey and the different things that we've done over the years with him. I also talk about the things that you need to be aware of as they get older with Centrelink and NDIS and all of that sort of stuff, you know, functional capacity assessments. I talk about that. I talk about the best time to get their tax file number, all of that sort of thing in that book. So looking back on all of the books, I think they have multiple purposes. Invite people into our world to educate, as I said before. They provide resources for families. They let other families know that they're not alone because, you know, when you get a diagnosis for your child, it can feel very lonely at the time. And when they read other people's stories, they can see that it's going to be all right and it's not so lonely. There's some amazing people out there that want to support you. And guide you through. And yeah, so it's support, resources, education, and just sharing our boy, which is wonderful. I love sharing him. And people often ask me if he understands what we're doing, and I never knew. Like, he loves the books. He thinks the books are amazing. And when people say, can you sign it too? He loves to sign it. But I take him sometimes to my speaking events and When I'm speaking, I often watch him and I watch his reaction, and he reacts perfectly depending on what I'm saying. Like, he will nod his head or he'll look at people. Like, if I'm talking about judgment and things like that, he'll look at people like, "Yes, it's not nice." And when I talk about the importance of him being accepted in the world, he will sit there and nod. So he does understand what what we're doing. And quite often he will get up on stage when I've finished, he'll ask if it's his turn, and he'll grab the microphone and he very proudly tells everybody his name, who his best friend is, what he likes to do, and that he loves his mum. He says that, but he has— he's got so much confidence.
Daniel Dougherty (Host) · 39:42
Oh, the important things.
Julie Fisher (Guest) · 39:44
Yeah, but I love that he does that. I love that he wants to be part of it. I, I don't ask him to do that at all. I never do anything like that, he always says, "Is it my turn now?" And I go, "Okay, if you want to have a turn, here's the microphone, off you go." So it's good fun, and I think it's nice for people to see that, especially people with young kids that are worried about what the future looks like. You know, they see a young man like Darcy doing things like that, you know, going to the basketball, going to the football, going to concerts, hanging out with his friends for dinner, going to the movies just like everybody else. And we're very lucky here because we have access to great support so they can access the community without us as well. You know, that's the big thing. Like when he turned 16, I suddenly realised, oh my goodness, like I'm still taking him everywhere and I wasn't doing that for his brothers. So that's when I really started to engage more support so that he could start to be more independent away from us because I think that's really important. And we're lucky here in Australia we can do that.
Daniel Dougherty (Host) · 40:49
Yeah, absolutely. That is a great thing about Australia and the Australian culture. Some things that stood out to me while you were talking about that. One is the challenges of writing a book in general, I think would be amazingly hard. But to write a book that encompasses those different aspects, it's not just to entertain. It's not just to share your story. It's not an academic book to just share knowledge, but it brought in all those aspects. And I think it would take somebody like Darcy, or Darcy in this case, to be able to pull those things together, pull those things together in a way that keeps people interested. Just an amazing way to bring people together and to share those, share that information. So really, really nice job on those. The, uh, the other thing that really struck me when you're talking about those is the challenge of society to be actually inclusive. And when I was growing up, just from a personal perspective, I've shared this a few times in conversations, that my parents were very, very inclusive. Taught us to be very inclusive of people in general, but particularly people with disability. But oftentimes, and we didn't know a lot of people, but it often involved completely changing our life and completely changing what we did when there's somebody with a disability around so that we could take care of them or so that we could be there for them. And very few times did I actually just go about my daily life and include them with what I was doing, as opposed to either making a big deal out of I'm going out of our way to help them, or completely stopping what we were doing to include them. But just to, oh, you know, I can just go, and I tried, but getting better and better as life goes on, society's getting better, being inclusive in the everyday activities.
Julie Fisher (Guest) · 42:53
It is, it is. And I think, you know, it is getting better, and people, I think with social media too, people learn more about differences and about different abilities, disabilities, different— all sorts of things. So I think that helps a little because they do see it. Um, obviously you don't see it all the time if the algorithms aren't, uh, engaged, but we do see more of it more and more. And I think, I think that's really good as well. I think with businesses and schools and things like that I think some of them need to learn more about being completely inclusive. I think they do a good job, but they could do a lot better because I think they don't, they don't sort of pick up the little things. Like, you know, like it could be a certain smell, or it could be the brightness in the room, or, you know, lots of other different things that can make a business or or whatever, more inclusive. It's not just about, you know, you see it all the time, it's not just about ramps and things like that. That's important, obviously, for people to be able to access these places, but then to stay in there and feel comfortable, I think we've still got quite a bit of work to do there. I think a lot of places think they're inclusive and want to be, but I think there's a bit more work that needs to be done with some of that, you know. You sort of, once you're in the world of disability and you go places, you notice things and you think, hmm, I wonder how they'd go doing that. I mean, even I used to work at our local pub and we, I had two wheelchair users that used to come in and I had two short-statured people that used to come in and they used to have to yell at me from the bar because we couldn't see them because the bar was too high. And I remember I said to my boss, I think that you should make a section in all three of the bars in the venue, like cut out a section so it's lower so that we can see those regular customers that are coming in so they don't have to jump up and down and yell at us just so we can go serve them. And yeah, that never happened, but it would have been good. So something simple like that, um, a heavy door so somebody in a wheelchair may you know, an opening outwards instead of inwards, might struggle opening that door, will struggle opening that door. So having automatic doors or something like that would be even better. Um, so just little things, changing areas. Like, you know, Darcy was incontinent for a long time, and you know, when he got bigger, he didn't fit on the change tables in, in the bathrooms anymore when we went out for dinner and things like that. And the first time I realized he wasn't going to fit on there, I had to just lay him on the concrete floor and it was awful. So then I used to start taking blankets and towels out with us and he didn't even want to lay on them in the end. So, you know, better facilities for bigger people that need assistance in the bathrooms would be good. And I know that they're starting to spring up. And I also know that they're very expensive. So I think, you know, maybe making those sorts of things more accessible for businesses to have would be great.
Daniel Dougherty (Host) · 46:10
Yeah. Thank you for sharing these things too, because these are things that I've become aware of thanks to stories like yours. I would not even think of, you know, changing tables for adults or, you know, I think of, all right, wheelchairs and maybe those who are blind or visually impaired who can't see. So you— and other than those two things, think, oh, I don't know what accessibility, what accessibility is needed. Yeah, right. But I'd be badly mis— I'd be badly mistaken if we limited it to that thought. And so just different ways that you can include multiple people, not only multiple people, that can include everybody. There are so many great designs out there now, so it's so much easier and so much more possible than it was 20 or 30 years ago.
Julie Fisher (Guest) · 46:57
Definitely.
Daniel Dougherty (Host) · 46:58
And it still takes effort, it still takes people's decision to incorporate it. So thanks for sharing that side of the story as well. Of all the things that you've been doing for advocacy, what's your favorite? What's your favorite mode of sharing?
Julie Fisher (Guest) · 47:17
I really love speaking on stages. I really enjoy that. I love seeing— yeah, I love seeing light bulb moments happen in the audience when I share certain things, and it's different every time. You know, I talk about different topics each time, just depends what, what the organizer wants me to speak about. But I really, really love doing that because I think the message gets out really nice and strong and to a big audience. You know, sometimes when I speak, I'm speaking to other families with kids with disabilities, and I love that too because I can see them really seeing the support side that comes into it. You know, yes, they've got a similar story, and sometimes— I remember when I first spoke to a group of people with kids with disability, I was so nervous because I thought, well, these guys, they live it, like, what am I going to give them? But what I gave them was a different perspective and different strategies We all do different strategies to help our kids and, you know, it's nice to be able to share those and it gives them the knowledge that there is lots of support out there if they need it and they want it. So yeah, I really love speaking on stage. I love the radio show that I do every week. That's really wonderful because I get to meet amazing people living with disability and I also get to meet and speak with the providers. And that's really special. I feel a bit spoilt actually, because I get to see the passion in which they do what they do. And then I learn who they are and when families say, "I'm looking for a provider in this field," I can say to them, "Well, I know these guys and they're fantastic. I think they'd work really well with you." So I can recommend the support providers to the families and I feel really lucky and blessed that I can do that. And that's because of the radio show and the expo. Go. So yeah, I love it all. But yeah, I do— I love writing, but that's different. That, that's, that's a little bit of, um, me time, you know, when I snuggle on the couch and I type away. Um, but yeah, the stage is probably my most favorite.
Daniel Dougherty (Host) · 49:30
Okay, fantastic. I know the purpose of this conversation is not— the purpose is not to promote your, your books and your media and your speaking and your radio show. And all the other things that you do is to share your story.
Julie Fisher (Guest) · 49:44
Yes.
Daniel Dougherty (Host) · 49:44
But a lot of big part of your story has become what you're able to share. And I'd be curious to hear more, a little bit more about your radio show. Mm-hmm. When is it? Who are the guests? Why did it come about? What's the purpose? I don't know, talk about your radio show for a few minutes.
Julie Fisher (Guest) · 50:01
I will. And yeah, I know that it's about my story and that is all part of it. But what I love about the things that I do the most is that it supports the community. That's what I really love about it. So the radio show, they were one of the big supporters of me when I wrote my first book and have supported me over the years interviewing me. And then one day I was just speaking to the now manager of the radio station and she said, "Would you like your own show?" And I said, Why not? Why not? Let's give it a go. And we started. We're 3 years old now. We're over 100 shows in. And as I said just before, like, we get to speak with people who live with disability. We get to speak with the families. So I also interview mums and dads as well so that they can share their story. And I love doing that because it's It's important for people to share their stories, to get it out and to show others that they're not alone as well. And then having the service and support providers, I really love because we get to really find out about the services they provide and the passion in which they do it. So one of our questions we ask them is, "What do you love about what you do?" And every week when we ask that question, they go, 'Ah, well,' you know, and you really see it's wonderful. And a lot of the time it's the pride that they have seeing their clients succeed and fulfill goals and things like that, much like the pride that a mum or dad would have as well. And I really enjoy that. So being able to bring that to the community is really special as well.
Daniel Dougherty (Host) · 51:48
That's really fantastic to hear. At least in Australia, it's probably true in other countries as well, but the providers of the disability services, there's so many good ones and so many great-hearted people, just amazing people providing that. And a lot of times that's overshadowed by the, you know, just the— I'll try to watch my language, but the people who take advantage of the system, who they're main intention is not the support of the people, but is making money, um, you know, and take shortcuts, um, just anyway, uh, all those things that overshadow the good that's happening with disability services these days. And so it's really refreshing that you have that platform, um, and that you use it to have those conversations and for people just to talk about why they do what they do.
Julie Fisher (Guest) · 52:40
What they do. Yeah, and it's, it's—
Daniel Dougherty (Host) · 52:41
that's a great platform.
Julie Fisher (Guest) · 52:43
Yeah, it is. It's really great. And, you know, we get to learn as well. You know, we might be talking to somebody and we might think, oh, in a couple of years' time we might be ready to look at something like that for, for our kids as well. So it's, you know, it's really special. And one of the things that I'm finding out is a lot of these providers have been around for a long time. Like, they're not just new since the NDIS has started. Like, we, we interviewed a lady today, and the business she works for, they've been around for 35 years. And, you know, the, the group that Darcy is with at the farm, um, the group that own that farm, they've been around and providing disability support for 60 years. So it's, it's great to hear that, you know, they're not all just started up and months ago or anything like that. They've been around for a long time.
Daniel Dougherty (Host) · 53:35
Yeah, that's so impressive. Yes, so impressive. So, um, yeah, we've covered it quite a bit. What have we not covered, or what, uh, what else do you want to share with the listeners?
Julie Fisher (Guest) · 53:50
Oh, look, I think I always like sharing my quote. My quote is, give people a chance and watch them 'Shine.' And I think it goes across all aspects of what people do, even when they're just catching a bus for grocery shopping. If you give people a chance, give them a smile, accept them for who they are, you will see them stand tall, you will see them feel good, and you'll see them shine. And I really like my quote, and I think when you see people succeed With achieving goals, again, you can bring that quote in for that because you really see them shine bright doing things that they love, giving them opportunities. And that's what we've tried to do with Dars, you know, give him all the opportunities, let him do all the things that he loves. He's a very busy boy, but he does everything that he loves and he enjoys every moment of it. He does get his time on the couch with the iPad, don't stress. We don't push him that much. But yeah, I really do like sharing my quote because I think it really does talk about what we need to be.
Daniel Dougherty (Host) · 55:05
Yeah, I think that is a fantastic quote and just a good reminder of, you know, just inherent goodness of people that we need to be reminded of. So many other things in the world that could get us down. So a really, really good reminder. All right. Anything else you want to wrap up with before we draw this to a conclusion?
Julie Fisher (Guest) · 55:29
Yeah, I think, you know, like entering a different world like disability is pretty scary. Even if you think you're prepared, like I thought I was, it is still pretty scary. And it's okay to feel like that. Don't feel bad about feeling like that because it is different and we're learning and we don't know what direction our life is going to go in. But always know that there's support, there's good people out there that you can talk to, lean on, get strategies from, have a coffee with, have a cry with. There's lots of good people out there, so, you know, don't abandon the support from others. Really lean into it when you need it, because I think it really helps. And enjoy the ride, you know. Everybody's got something really special to give, I think. And I think when you open your heart and you let that happen, it's really wonderful.
Daniel Dougherty (Host) · 56:20
Yeah, I couldn't agree more. That's really, really, really nice words to end on. Julie, thank you so much for your time. Thanks for being a part of this conversation. I look forward to— we're actually going to be able to meet in person. Yes. Here in coming week. It'll be, uh, by the, by the time this is released, we will have met in person.
Julie Fisher (Guest) · 56:41
Yes, I'm looking forward to that.
Daniel Dougherty (Host) · 56:43
But really, thank you for your time, and thank you, and thank you for your contributions to the disability community and the advocacy work that you do. We really, really appreciate it.
Julie Fisher (Guest) · 56:53
Thank you. Thank you, Dan, and thank you for having me today. It's been really lovely speaking with you.
Daniel Dougherty (Host) · 56:59
Of course. And, uh, just always remember that we're We're all in this together.
Julie Fisher (Guest) · 57:03
Yes, definitely.
Daniel Dougherty (Host) · 57:06
Thank you for listening to this episode of Golden Threads. We hope this story of resilience resonated with you in some way. To make this podcast available to more listeners, please leave a rating or review wherever you get your podcasts and hit follow or subscribe. You can also visit kintsugiheroes.com.au to make a tax deductible donation to help us share future stories of strength and hope. Remember, we're all in this together.
You don't have to be in crisis to call.
Subscribe
Spotify
Apple