Growing Bold and dealing with bullying and exclusion

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• Quaden's Law

Growing Bold and dealing with bullying and exclusion with Yarraka Bayles

Pete:

Welcome to the Grow Bold with Disability podcast brought to you by Feros Care. A podcast dedicated to smashing stereotypes and talking about the things people with disability care about most to help us live bolder, healthier, better-connected lives. I'm journalist Pete Timbs.

Pete:

Today's episode of Grow Bold with Disability is growing bold and dealing with bullying and exclusion. And our guest is Yarraka Bayles, an Indigenous woman who last year posted a heart-breaking video of her 9-year-old son Quaden who lives with achondroplasia saying he wanted to take his own life after being bullied. In this episode, we'll find out what led Yarraka to post the video, how bullying and exclusion have affected, not just Quaden but his mum and his entire family. And what needs to be done to lessen the bullying statistics, especially in our schools. Our regular listeners will note that Tristram isn't with us for this episode, but he will be back soon. Yarraka, welcome to Grow Bold with Disability.

Yarraka:

Thanks very much for allowing us to be able to share our story. It's great to join you.

Pete:

I'm looking forward to this one. Now let's start at the beginning. So Quaden has achondroplasia. Can you explain that for us please?

Yarraka:

Yeah, sure. So, achondroplasia is the most common form of dwarfism, among the several hundreds. So about 80% of babies born with Dwarfism are born to average height parents. So, anyone can have a child with dwarfism.

Pete:

And how does this impact Quaden physically?

Yarraka:

I think the physical challenges are probably having the most impact on him, especially as he is growing to preteens. And as baby he pretty much just stayed on my hip until he could walk. So, his physical milestones were very delayed. But it's important for people to understand that not all people with achondroplasia have the same diagnosis. There are lots of different forms and it's not a one fits all approach. So, I can only speak on my lived experience being the mother of a child with achondroplasia and his physical development. His low muscle tone and his short limbs have had a pretty painful impact on his life of late and the physical pain I guess would be the hardest for us to deal with as a family. Just seeing your child in so much pain. And unfortunately, there's not much that can be done. There are a few corrective surgeries. But the pain is definitely the hardest thing to deal with.

Pete:

What are the doctors saying? Will this sort of pain, I don't want to lighten it by calling it growing pains, but when he does get to maturity, will that stop?

Yarraka:

Unfortunately, not. It seems the older he's getting, the more pain he is experiencing. And there's a number of reasons for that. And again, each case is different. But from my experience the joints are getting cracklier. So, the early onset arthritis, the inflammation, the headaches because of the pressure in the fluid on the brain. Even though he's already had the decompression surgery at four years old with the brain and spinal cord, it hasn't alleviated much pain at all unfortunately. It has given us the opportunity where we haven't had to deal with having a shunt inserted. That's major brain surgery there and that's quite common for you know several types of dwarfism as well. But I think we've been we've been pretty blessed to have dealt with things early on. So, from the age of three when he started having surgeries, and up until last year we went a few years without having any surgeries at all. There are a few surgical procedures that we are currently discussing at the moment and he's at the age now where he just wants to be tall.

So, he's been studying the limb lengthening surgeries. It is so painful. You know, there's lots of websites and Facebook groups of parents and families that have successfully gone through the limb lengthening surgeries. And I'm just hoping and praying that when he's old enough to make his own decisions, that he'll be comfortable within himself and say “you know what, I don't want that surgery anymore, I'm happy with who I am”. And his physical appearance and his disability doesn't define him. But at the moment, of course, you know, he's a 10-year-old boy. He wants to play footy and basketball and be normal, whatever that is. Or his perception of normal. He just wants to be like everyone else and do what everyone else does. Do it normally and not have the physical challenges and not be dependent on me for helping him with just about everything. And I just I try and tell him you've got two arms and two legs, they may be a bit shorter, but at least you've got what you need to get by in life.

Pete:

Correct, correct. What sort of pain management is he on? Is that disrupting him a lot as well?

Yarraka:

Yes. So, he's been home schooled mostly for the last two years because of the pain and with the respiratory issues. His primary diagnosis is achondroplasia, then the hydrocephalus, then the severe obstructive sleep apnoea, hearing loss, low muscle tone. There are a few things that are also contributing to the pain. And the way he explains it to me is, with the headaches, it's like the pressure. He feels like he can literally hear the pressure and he said it's like fluid dripping and he can hear everything like the bones crackling and it's almost like his skull is expanding and then compressing down. He feels like his head is getting bigger and smaller. Contracting. It's causing him a lot of pain. There's not much that we can do being 10 years old and already undergoing the surgeries. I've always opted for the natural medicines and our traditional medicines which we've noticed a far more effective than the harsh pain relief that have a lot of issues afterwards and a lot of the side effects.

He's never really been one for pain relief, you know, after his brain surgery and the other operations that he's had where he's on a drip and they have given him the pain relief. But after that, when he's out of hospital and they give you the script, he's never wanted to take any of the Panadol or Nurofen or anything that they prescribed. So, he's very tough. I think this is his normal and he doesn't know what it feels like to live without pain, unfortunately.

Pete:

Talk us through traditional medicine.

Yarraka:

Yes. So, when I look back at all the surgeries he's had, what's worked and what hasn't worked, there was 11 surgeries in total. Not all of them were as successful as we'd hoped, and I just thought I’m not wanting to keep coming back and treating him like a guinea pig. I just said, you know, can we try something else? So, we went back home on to country. I went up north to my dad's country, we had our Ngangkari, the traditional healers in our communities', work on him and that's when he went the three or four years without any surgeries at all.

And there's lots of medicines. We've got our Gumbi Gumbi and a lot of these medicines that I'm not too sure of the english interpretation. But all I know is they work, and they are far more effective. And you're talking about hundreds and thousands of years of track record when you're looking at traditional Aboriginal healing methods and it's a much more holistic approach. They take in to account the mental, physical and spiritual needs of the individual that you're treating. We've noticed that with a lot, whether it's just massaging the oils, you've got, you know, the plant medicine as well as the animal medicine and if anyone remembers the brand Goanna, you know that deep heat rub. So, the active ingredient once upon a time was actually Goanna oil because of the healing properties of the Goanna oil. They have since taken that out and it isn't as effective. But Goanna oil has been known for decades to help relieve the pain from arthritis and a lot of aches and pains around the body.

So, he's had Goanna oil, Dugong oil, Emu oil. We've got our Gumbi Gumbi. Lots of different teas, but it's mostly oils and he's noticed the most effective pain relief for him is massaging oils in. It just releases a lot of the pain, not all of the pain but then you've got your medical cannabis as well, which has been absolutely amazing. There's a number of different things that we've had to try because western pharmaceuticals just weren't working, and I didn't like seeing him so drugged up and just not with it. Sometimes that would last for days and weeks while he's in hospital and he just wasn't really there. So, we've opted for our traditional medicines, which are amazing because it's all natural and its plant or animal medicine that our people have been using for a very long time. We're really lucky to have a lot of these medicines in our own backyard. And we're growing a little bush food garden here that we incorporate into everyday living as well. We've got the highest, most nutritious food sources in the world, right here in our own country and a lot of times in our own backyard. So, we encourage people to utilize those to learn about the plant medicines here in our own country before looking elsewhere. We've got super foods, you know, the Kakadu plum has the highest vitamin C content in the world. And we grow that here. So, it's just been really good to tap into a lot of our cultural knowledge.

Pete:

Fantastic and minimal side effects which is great. Let's go back to February 2020. You're picking Quaden up from school. He's absolutely distraught after being bullied for the umpteenth time. Can you take us through the events of that day that led up to him getting so upset?

Yarraka:

Yeah, sure. So, it was actually the 19th, and he hadn't gone to school the Monday and Tuesday before because he was just over it. It was a new school term of 2020. He's just started grade four, wasn't really looking forward to it because of similar incidences at the school the previous year, which were reported, and he felt, well we felt, weren't dealt with. But we said, let's give it a try, we'll see how it goes. So, this was the first term and he lasted three weeks of that term and he’d had enough by then.

So, we got a phone call on that morning of 19 February and the principal said, “hey we noticed that Quaden wasn't at school, but we know how much he loves his basketball and we've actually got the Brisbane bullets coming in and they will be on the court this afternoon if Quaden wanted to just come in and play some basketball.” And as soon as Quaden heard that he up, put on his uniform, his basketball shoes on, he's just such a sports fanatic. I took him to school and my daughter and granddaughter, the three of us, went to pick him up a bit earlier. They finish at three o'clock and we got there around 2.45 and we saw his class and the Bullets still on the basketball court. We just sat and watched and by that time they were lining up to get their Brisbane Bullets singlets signed. Quaden actually got his shoes and his singlet signed. And that's when we noticed the group of girls that were in line directly before and after Quaden just having a little giggle and sort of patting him on the head and making reference to his height. So, measuring where his head sits on them. And he's literally half the size of most of the students in his class. So, it is very noticeable that he's different and he's very self-conscious of that as well. By that time, I was like, oh God, not this again. I've sort of given him the eye signals, he is hearing impaired as well, so we have very good communication without having to speak. So, I've asked him, you know, through our little signals and the eye contact, did he want me to come and get him and deal with it? And he just looked at me very adamantly like, no mom don't make a scene. So, I knew exactly what he was saying. Meanwhile me and my daughter are just to watching him and feeling how uncomfortable he was.

And for a mother to sit on the sideline and watch that and feel so helpless having to respect your nine-year-old son's wishes at the time. He was nine last year. It was very difficult for me to do because I felt that pain and I felt the humiliation. I could see it on his face. But the fact that he has this ability to just shrug things off and pretend like it doesn't affect him until it's behind closed doors and that's exactly what happened. As soon as he got his shoes and his singlet signed, he ran straight to the car and just broke down. He was hysterical.

Pete:

And then you went live with the incident. I've watched it a couple of times. It's pretty disturbing. Why did you feel the need to go live?

Yarraka:

I went live after I’d actually spoken to the principal. And at that point in time, it was just like I'm over this. I honestly don't know what else to do. I've spoken to the principal and the staff several times. I've spoken to children's parents when it's happened in the playground or in the shopping centre or wherever it may be. And it just doesn't stop. For the years leading up to that I've always said just ignore it. But ignoring it doesn't solve it. We need to start dealing with it. And he's at an age now where he tells me what he wants me to do and I'm now respecting his wishes and I will deal with it right there and then so that parents and children are aware that it does impact him very deeply. So, it wasn't until after I've spoken to the principal, and he was still hysterical. I tried to control him, he pushed me away. I don't know what else to do. I said, I want everyone to see and feel this. So hopefully this is what's going to help make things change.

So, I press record and by no means did I ever expect that to go viral around the world with 25 million views and all the different scenarios that happened after that, even still to this day. You know, a lot of the backlash, it was a very heat of the moment thing out of frustration. But you know what, I have no regrets. Because the intersectionality that one scenario has led to - we've been able to openly discuss not only bullying or discrimination and intimidation or harassment or abuse, it's also been able to shed a light on suicide, on mental health, on the issues that Indigenous people face. And it's just been able to make people more comfortable and hopefully empower and encourage other people to be able to speak up. Because when we speak up about things, we take the power back and that's what we like to encourage people to do because we know what it feels like to suffer in silence. We did that for far too long and that's what almost took his life and my life too for that fact. The fact that I have my three children that have all attempted suicide because it seemed taboo, like no one ever talked about it. We never got help for it. And since that video, we're all now receiving services and the therapy that we need and we're not ashamed to talk about it anymore. It shouldn't be a sensitive issue where people feel that it's a weakness. That they don't feel like they can cope with whatever they're dealing with. And they think the only way out is through suicide. I think if we flip the script and talked about things openly and honestly and people felt safe and comfortable and confident in expressing their true emotions, I think we'd be able to see statistics, especially around suicide impacted by bullying. I think we would see a huge improvement if we ensured that our children were able to speak about things freely and openly. But I don't see that happening enough at the moment. Which is why we're still seeing suicide rates through the roof.

Pete:

What was the support like from within the Indigenous community?

Yarraka:

They've always been amazing. Since his first surgery, since I first started sharing his journey, we've had the most amazing support not only from my family, but you know, Indigenous communities around the world that also faced the discrimination and the racism on a daily basis. You know, just to know that you're being judged by the colour of your skin and feeling alienated in your own country. And I've often described Quaden’s condition, it's like a double-edged sword. You know, he's an Aboriginal boy with a disability trying to navigate through his world, also the disability sector and the western world. So, it can be very difficult. He is constantly code shifting and that takes a lot of guts, a lot of stamina, you know. It's a very tiring thing to be able to do. But he's managing that quite well now, thanks to the support from our family and community and also, you know, the people in the disability sector from around the world that also could relate, that have been there, that have had the experience of that little child that didn't want to live anymore. That couldn't take the bullying or the harassment or discrimination that they constantly face. It eats away at you. It eats away at anyone, let alone an innocent child that doesn't understand why people are treating him differently. So, I think the only way to deal with it is to start talking about it more than we are now.

Pete:

Now he does love his sport, tell us what it meant to him when he ran on with the NRL Indigenous All stars. That was pretty cool.

Yarraka:

Ah yeah, just seeing his face makes me smile. He explained it going from the worst day of his life to the best day of his life. So just seeing the support from the footie boys, they wrapped their arms around him, they reached out straight away, and they all wanted to help cheer him up. So, we went straight down to the Gold Coast, and he spent time with the boys in camp and just for him to feel that he wasn't any different to them you know. They treated him like the little brother or the nephew that he is, that he deserves to be treated with respect and they've always been like that, you know. We don't even have to ask you know, it'll just be an inbox or an email or a text message still to this day, they check in on him and that is what's helping us deal with it even more. Knowing that we're not alone, knowing that he's got the support of his friends, his family, of his sporting heroes, of people all around the world that can relate to what he is going through and people that can't relate but just have empathy and compassion in their hearts enough to reach out and say “hey little brother I'm here for you. If you ever need a yarn, you know, don't be afraid or ashamed to contact me, I'm here”. And sometimes that's all we need to hear because people are just feeling so alone, especially with what's going on in the world today. The disconnection is what I believe is driving the higher statistics of abuse and suicide. So that connection and interconnectedness which is paramount in indigenous cultures around the world. You know when that's gone, that's when we face these issues of feeling alone and so many roller coaster emotions. Just up and down and round and round. We've been on this big merry go around we call life that has just taken a turn for everybody. No, it hasn't just been a tough year for us. It's been a tough year for people all around the world that have been dealing with these things. And I think now it's been a bit of a blessing in disguise because people have been forced to talk about things openlyand not being judged as harsh as you would be if we weren't in the predicament, we are today around the world. So, I think it's definitely been a blessing in disguise.

Pete:

Now it all happened at school. You mentioned this has happened before at school. How has the school and the education department reacted when you contacted them about these issues? Are they doing anything about it?

Yarraka:

A few times going back on the paper trail seeing the emails they were very detailed emails of the incidences. So, I've always made a point to make sure that we have, you know, that paper trail and he felt that there wasn't enough being done because if there was, why was he still dealing with this? So, the recommendations that we were suggesting is that if there were new students that they were aware of the children in the school. Quaden is not the only child with a disability in the school. There's a student in a wheelchair, on a walker. There are several people with differences in the school. So, I'd often suggested on a new school year or whenever there's new students can they be reminded of the students that they may see around the schoolyard that may not look like them. If they're different, just a bit of disability awareness and education will go a long way. And unfortunately that just wasn't happening, which is why the same instance, you know, these same bullying episodes. But I'm conscious since dealing with Brooke Gibbs, the word bullying, it sort of has, well different people can have different meanings to different people. So, we're now encouraging children to call it out for exactly what it is. When a child comes home and says I got bullied today, that could mean different things. You know, it means a different thing to a child and the parent may automatically think, did someone punch you or push you or hurt you? Where it could be just what happened to Quaden and a pat on the head and laughing and joking and pointing out his differences. And at the time that may not have seemed like a big deal, but when that's happening on a daily basis that was the straw that broke the camel's back on that day. He had had enough and that's what led to that video. But I think when you say bullying, I don't think that schools know what to do. You know, they have no bully zones and all the signs and all these policies and procedures sitting in a folder in an office somewhere that look great and sound great. Yeah, but they're just words on paper. We need action now. These are innocent children's lives on the line and way too many children's lives have been lost because of the inaction. We need things that are in place that our children can feel safe. Like everyone else, everyone deserves to get up and go to school and get an education. Yet our children with disabilities or from different backgrounds, they may have a different language or come from a different country. They are constantly under attack. So we need, in my opinion, to have safety networks and measures in place in every single school. And this is how we came up with the idea of Quaden’s law that we're still working on. But Covid has been getting in the way of us being able to travel and have meetings with a lot of different stakeholders involved in mobilizing Quaden’s law. So essentially what Quaden's law is, it is a safety network that we would love to pilot across some schools that are interested here in Brisbane at the moment. And we're just going through the finer details on how to report bullying. You know, so people can remain anonymous whether you're a student, a child, a victim, whether you've just seen it or you could be a staff member. There needs to be accountability. People need to know that they can report whatever they have seen. But I think a lot of the help also needs to be aimed at the people that are displaying these behaviours. Where are they getting these behaviours from? And how do we deal with that? Because it's not the teacher's fault? It's not the Education Department's fault. It's not the school's fault. A lot of these behaviours are learned behaviours. They may be picking this up from whether it's the violent video games, the household, the communities, wherever they're getting these violent tendencies, they're bringing that into the school grounds and it's our children that are suffering that are on the receiving end. So, we need more safety mechanisms in place in the school to avoid things like this from happening again. And hopefully Quaden’s law will be able to be utilized across the country and hopefully, you know, globally, where we can start putting these measures in place to ensure our children's safety, not only in schools, but everywhere. It could be an app where they report into straight away where they've got access, or it will ring an alarm bell where we have a tactical response team to come out and deal with it. Whether they're feeling suicidal or they're being attacked right there and then. We need something like that because that's how urgent it is. It needs urgent attention.

Pete:

And what sort of reaction are you getting to the concept of questions law. Are people going too hard basket or are they actually listening?

Yarraka:

We've got so much support and assistance in getting this up and running. You know, we've looked at a few different programs that are on offer and available now, but unfortunately, they're just not getting out there. I'm not too sure why they're not being utilized, but there are brilliant apps and platforms to help people that are being bullied and also the children that are coming to school, the troubled students that are displaying these behaviours. But they're just not being utilized. I'm like, wow, these are free apps that could really help. And I think schools and the Education Department need to make this compulsory. But it's just not happening. There's just a gap there that we're trying to fill, but it needs to be strategic, you know, it's not a one fits all approach. There are so many different types of abuse when it comes to bullying and what exactly bullying is. So, we just need a clearer understanding of bullying and for people not to be thrown off by that word. So, if we can encourage our children to say exactly what happened, not just come home or go to the teacher because I'm sure teachers are sick of hearing, you know, he's bullying me. Well, what does that mean?

We need to say, you know, he pushed me, or she just did this or just to be able to use our words and describe exactly what happened. I think that would be much more useful than just throwing this word bullying around because, you know, you've got lots of anti-bullying campaigns. Yet the statistics are through the roof, it hasn't been improving since these campaigns are up and running. So, I think we just need a different approach and that's where Quaden’s law will hopefully have a much more holistic approach and not just be a band aid solution. But look at the root cause of why children are bullying and why they are lashing out at students and staff members or whoever it may be. So, we're hoping that when it's up and running it will be successful. And that's when we'll see real change in our communities, especially with our children, our vulnerable members of society.

Pete:

Yeah, fingers crossed it all gets through. Now Yarraka, you know, our podcast is called Grow Bold with disability. We always ask our guests this one question, what does living a bold life mean to you?

Yarraka:

Well, that could mean many things. For me personally, you know, it's just being myself, unapologetically. Not being ashamed to feel comfortable in your own skin. I do have a different colour skin to the average Aussie. I do have different features to the average Aussie and if you do too what I would say is embrace that. And I tell my son, you know, being different is deadly and in Aboriginal lingo deadly doesn't mean dangerous. Two words in our communities, you'll hear very common are Gammon and deadly. So, gammon is the thumbs down and deadly is the thumbs up. And when I explained that to Quaden you know, embrace your difference. That's what sets you apart. People will remember you because you're different and I know right now you want to be normal, and you want to blend it and be like everyone else. But that is so boring. So being bold and having the courage to just live your life unapologetically and being your true, authentic self. That's being bold. That's what being bold is to me. Living my life on my terms. And it's taken me 39 years to get to this point. And raising a son for the last 10 years with, you know, a lot of challenges. It's made me realize and made me much more appreciative, you know, I definitely don't take a lot of things for granted. Um, you know, just seeing what he goes through, it makes me feel like I have got nothing to complain about. So, I encourage him be bold every day, wake up, be happy, be strong, be confident as hard as it is. You have been born with this blessing. It is not a curse to be born with a difference. That is your point of difference. And everyone will remember you for that. So, we can just only hope and pray that by raising more emotionally resilient children and people that our world will be for future generations are much more loving and accepting world in an inclusive world, the future has to be inclusive.

Pete:

Well, you're doing an amazing job. And our listeners can find out more about Yarraka and Quaden’s story in our links providing today's episode show notes. We will also have some links in there about Quaden’s law so that people can find out a lot more about that. Yarraka, thank you so much for joining us today on grow bowd with disability brought to you by Feros Care. It's been an amazing lesson actually. I've learned a lot today. Thank you.

Yarraka:

No worries. Thanks for having us. It’s been great and I look forward to sharing a lot more as well and hopefully listening to many more podcasts like this that will help enlighten and educate people. So, thank you for what you do as well here. It's much appreciated.

Pete:

This podcast is brought to you by Feros Care, an NDIS partner delivering local area coordination services in Queensland, South Australia and the Australian Capital Territory. Feros Care is a people care organization committed to helping people live bolder lives. We call it Growing Bold. For over 30 years, Feros has been making it real for both older Australians and those living with disability. To find out more head to www.feroscare.com.au

The content and views discussed in this podcast series are those of the individuals involved. They are not necessarily condoned by, or, are the views of Feros Care or its employees.