GROWING BOLD AND CARING FOR A SIBLING WITH A DISABILITY

Additional information

• Information on Cerebral Palsy
• Olympians: Cate Campbell
• Information for carers

Growing Bold with caring for a sibling with a disability

Pete and Tristram: 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 and I’m Tristram Peters. I work for Disability Service Directory, Clickability, and am a wheelchair user living with spinal muscular atrophy.

PETE: Today’s episode of Grow Bold with Disability is growing bold and carers and our guest is Aussie swimming legend, world record holder and Olympic gold medal winner Cate Campbell. In this episode we will speak to Kate about what it’s like growing up with a disabled sibling. Cate’s brother Hamish has severe cerebral palsy and requires around the clock care. And we’re going to find out what influence Hamish has had on Cate’s career. Cate, welcome to Grow Bold with Disability.

CATE: Hey, thanks for having me.

TRISTRAM: So, before we start chatting about Hamish and your family tell us a little bit about yourself. You were born in Malawi in 1992, the oldest of five kids. What was it like growing up in Malawi?

CATE: Yeah. Malawi is a tiny little country in Africa. Its claim to fame is Madonna adopts her children from Malawi so I’m, like, a little disappointed that she didn’t pick me. But there were, there were children in greater need than I was to be, to be fair. Um, so yeah, moved to Australia in 2001 when I was nine years old. So, I still have some quite clear memories of Malawi, and, um, it was a wonderful, wonderful place to be a kid. Ah, the health and safety regulations, just about non-existent there, and as a kid, that’s wonderful. I think as an adult trying to get anything done it would be slightly problematic, which is why, you know, my family left. But it holds a real soft spot in my heart. And ah, I was due to go back there at the end of this year. Um, but hopefully I’ll make it back there at the end of next year.

PETE: Now, obviously, people know you for your feats in the pool. How old were you when you realize that you’re pretty fast in the water?

CATE: Uh, well, so I joined the swim club when we moved to Australia. Because how else do you make friends in Australia than by joining a local sporting organisation. It’s like a segway into Australian culture. Did not understand AFL so it couldn’t pick that one. Um and actually I have been with that same coach ever since. So, we’ve been together for 19 years, which is pretty special. He’s known me since I was nine years old. But I just loved it. I was one of those really weirdly motivated children who, like fell in love with something and then kind of obsessed over it and was quite happy for her life to revolve around it. I was probably, like every parent’s dream as a teenager because all my mom had to do was to say “Cate, you need to behave or else I’m not taking you to swimming training.” I was probably about, ah, maybe 13 or 14 when I looked like I was going to be pretty good. And then had a pretty fast acceleration from there and made my first Olympic team when I was 16. So yeah, it all happen quite quickly, quite early.

TRISTRAM: Amazing. But as much as we love to check out all your achievements, we also want to talk a bit about your amazing brother Hamish. So, tell us about Hamish.

CATE: Yes. So, Hamish is the only boy out of the five kids. So, he’s got four sisters. You could either say lucky him or poor him depending on your stance on if you have sisters or not. And how old is he? He would be 24 this year. So, he was born in Malawi and he was a stillborn. So, he was born without a heartbeat. And he suffered massive oxygen deprivation at birth, which caused brain damage. And as a result, he has cerebral palsy. So, the fact that he’s alive and still kicking on at 24 years old is a miracle. You know, right from his birth we were, like, afraid that we’re going to lose him. And then he’s had some pretty horrible and pretty complicated health battles since then. So, I think that I’ve learned so much about life through Hamish and our family, you know, was obviously changed forever. But that isn’t to say that the change was a bad thing. I think that people can often view disability in a way where they say, “Oh, you know, you pull people” or “poor Hamish”. I can clearly remember this this one time at school when I was at high school and I said, “Oh, you know, just a conversation. I have a brother who has cerebral palsy and is in a wheelchair”, and the first reaction from my classmate was like, “Oh, I’m so sorry”. I was genuinely confused. I was just like, “Why? It’s kind of great. We got disabled car parks, walk straight into the shops”. He’s less annoying than your brothers from the sounds of things. Um, my parents did a really good job, like, right from the beginning of just normalizing Hamish and focusing that he was a full person exactly as he is and that while we need to help him, obviously a lot we don’t need to change him. Ah, which I think was a really important distinction for them to make.

PETE: Was he part of the reason you guys moved to Australia in 2001?

CATE: Yeah. Yeah, he was. So, um yeah, medical facilities and standards in Africa are not great. That is the understatement of the year. So, he was actually born in Malawi. But they had, you know, no ventilators, nothing. Um, and he had to be airlifted to South Africa within a couple of hours of him being born so that he could get medical treatment there. And then you know, having cerebral palsy he was quite epileptic for the first, probably 15, 16 years of his life. So, he would have seizures. And there just weren’t the facilities in Africa to cope with that. And then Mom fell pregnant with my youngest sister, Abigail. And they just kind of said it’s just not safe for you to have another baby here, just in case something happened. So, uh, my parents packed their bags and with four children and mom, seven months pregnant, moved all the way around the world knowing one person in Brisbane and they landed in Australia. I know, I know. But it was in some ways, it was kind of wonderful having those first few years in Africa with Hamish. There’s a huge, huge stigma around disability. It’s steeped in superstition in Africa and Africans believe that it’s a witchcraft, or it’s a curse on the family or they believe that it’s because they’ve done something wrong and there’s so much shame around it. And Mom was able to take Hamish and here was this privileged white person and she would turn up the therapy classes with all these other African women. And it just blew their minds that someone in her position could have a child with a disability. So, you know, even right from when he was little, Hamish was helping to bust through stereotypes and myths. But yes, his level of care is definitely much, much better in Australia.

TRISTRAM: And you touched on the care, what type of care and support growing up would you provide to your brother?

CATE: Yes. So, I mean, I would say that Mom and Dad are his primary carers, but we obviously all helped out. You know, if Hamish needed feeding that we would feed him or change his nappy. Pretty much our care revolved around just playing with him and including him in day to day life. You know, we always made sure that he was front and centre in all our family gatherings. Hamish, probably while he’s 24 years old, he probably only operates at the level of maybe like a 1 or 1 and a half old. You know, he’s nonverbal in the sense that he can’t speak. He makes noises, and we kind of understand from the noises that he’s making, we can kind of figure out what he’s wanting. Ah, but he is one of those people who has always been able to pick up the energy in the room. And so, he always loved being like in the thick of things. It is really funny for a while, particularly during the Commonwealth Games, his favourite song would be the Australian National Anthem because he was able to feel all the energy in the room. And, you know, Mom and Dad were obviously watching myself and my sister Bronte compete, and so they were super excited, you know, every time we came on. And then if it coincided with a national anthem, obviously meaning that would one. Obviously, the room was electric and Hamish picked up on that so he used to go crazy every time you play the national anthem for him, which I just think it is.

PETE: Great. Yeah, that’s great. We mentioned moving over here just for the access to support for Hamish. What are some of the other sort of sacrifices that your family has made for him?

CATE: Yeah. I guess that, um, in some way your life, when you have, when you’re caring for a disabled person, in some way your life does revolve around them in that we can’t really take beach holidays. Hamish obviously can’t go on the beach. Or if we do, you know, half the family goes for a swim and hangs out on the beach. And the others, um, stay back on the sidewalk or go do something else. Ah, you know, probably before Hamish came along, my parents were very adventurous, good campers and hikers. And obviously you can do that while say, Hamish was small and you could carry him. But as soon as he starts to get bigger and need a wheelchair, those things are just unavailable to you. And now that he’s obviously a grown man he’s a lot heavier. So, you need you need two people to move him. Well, you need to have a lifting device to help. It hampers things like, you know, even something as simple as let’s go away for the weekend. Although we have to make sure that the house is wheelchair accessible, like, where can Hamish sleep? Can we get a wheelchair in there? So, it just requires a lot more thought and a lot more effort. And now he has quite severe health complications, unfortunately and so we need to have close contact to a hospital at all times, and we need to make sure that we have all of his drugs their available. There’s just a lot of planning that is involved in just about any activity. But in saying that something that has an attitude that we picked up from my parents is that we never begrudge that, like, we never complain about it. We never, you know, get angry or annoyed at Hamish for these limitations. That’s just our life, you know, that’s just something that that we’ve accepted. And we just work around it. I almost like don’t even think, you’ve made me have to stop and think of all the things that we can’t do. Ah, but normally it’s just like Okay, what can we do with Hamish? Let’s do that. And the other options aren’t even options.

PETE: Yeah, nice.

TRISTRAM: Absolutely. I know personally growing up as a power chair user I always hated that I couldn’t be spontaneous. You know? I couldn’t just go to the beach like you mentioned that sort of thing. So, in terms of that planning, what was that like as a kid? You know, all that thought going onto planning activities and holidays. You as his sister.

CATE: Yeah. I guess that it would, fortunately, like my parents did a lot of it. But if I wanted to take Hamish out, like, you know, I would often take him shopping with me. Look, I might have been exploiting him for his disabled car park permit.

TRISTRAM: My friends do the same for me.

CATE: I’m like I love you Hamish I also love that sticker that comes with you. Or going to restaurants. Or so I think that I had to be conscious of it. But if I went to do something and Hamish couldn’t do, it would be like, Oh, OK, we’ll find something else to do. So, I think that there was a lot of planning. But, you know, we’re lucky in that we come from a big family. And so, if we do go on holidays, we always make sure that, like half the people go out and have an adventure and half of us stay to look after Hamish. And then the next day we switch and so that I don’t want to call it a burden, that responsibility I think that’s a better word for it, that responsibility can be shared across many people. I think that it’s incredibly hard if, you know, I can’t imagine being a single parent with a child with disability because then that responsibility is on you, 24/7. We’ve been very lucky in that we have a group of really supportive people in our family. We don’t have to go looking for them, who will know and love Hamish, and all want what’s best for him.

PETE: Have you ever had carer in for him so that Mom and Dad can go away and have a break or they haven’t really found the need?

CATE: Now they do. Now, now he does access respite care three days a week and, um for a long time he was able to go to a special school in Brisbane. And he used to come, you know, come back with a report card saying Hamish needs to learn to use a spoon. He never learned to use a spoon. I used to get very jealous of those report cards. I was like I wish that I could learn to use a spoon to get an A for that. Like that would be great. But now that he’s obviously graduated from school, he does access respite care, just because of his health complications. I know that my mom really struggles with things like letting him stay the night. And she struggles to, like, relinquish that. And, um, you know, he’s being through some really awful times, and she’s been, you know, by his side throughout all of it. You know, when he had stays of months and months in hospital. So, part of me can understand that. I moved to Sydney about a year and a half ago, and one of the things that is really challenging for me is not being able to be there and offer that respite to them. Um, you know, obviously, with my training, I have very limited time that I that I can go back and be there as a support for them, particularly like, and it’s particularly frustrating now because, you know, I think everyone has a little more time on their hands than usual. But you know, the borders are shut. So, I can’t even go back and give my parents – I counted back and I was like, they haven’t been away together, just the two of them since probably 2013 which is, like, terrifying to me. And you know, I had booked into go up and take care of Hamish, but the border shut. So, you know that there are there are lots, lots of things and lots of sacrifices that that everyone’s had to make.

TRISTRAM: Yeah, sure. You touched on then going back and providing some respite for your mom and dad. How do you navigate between being a carrying a sister? Or are they just one in the same?

CATE: Yeah, in some way, it is just one in the same. I think that if your family, you care for those people and I think that the different people in my family required different beats. You know, Hamish needs me to feed him or change him. Or we sit on the couch and we watch movies together. My youngest sister probably needs care for me in a different way. She makes me watch all these awful anime movies, which I don’t understand. I have to walk her through makeup and all of those things. So, I think that for me being a sister and a carer, I think that you can offer care to just about anyone in your family. It’s just that Hamish’s needs are more specific. And probably more demanding I would say that and then having to sit through an anime movie.

PETE: Do you think Hamish or growing up with Hamish in the family’s made you a lot more empathetic towards to other people in the world.

CATE: Yeah, definitely. I think that it’s, he’s also just brought a really grounding perspective through just about everything in life. You know, I would sometimes walk in from a really tough training session, and, you know, I would be really angry and frustrated. And there was Hamish, he used to sit by the sliding doors as you’d walk in the house and he would always kind of greet you with a smile and had been sitting there and waiting for dinner. And Mom had been, you know, too busy. And then I’d walk up to him off, dumping myself like, Oh, Hamish, how are you and he’d like give me this beaming smile and I was like, Oh, mom has Hamish had dinner? She’s like, Oh, no, I haven’t been able to get to him. So, he had just been sitting there waiting patiently for someone to notice that he was hungry. You know, not complaining. Um, and you just look at him and just think I’m really lucky. You know, I don’t have anything to complain about.

TRISTRAM: And Cate have you ever witnessed any discrimination or had to intervene on Hamish’s behalf? Not that I condone violence but I have a mate that once punched a kid at school for calling me a cripple?

CATE: That is so great. Everyone needs a mate like that in their life. Uh, no, I don’t think that that I’ve necessarily had to intervene on Hamish’s behalf. I think that we might, you know, educate people. And I think that sometimes people can get annoyed or frustrated with disability. I know that sometimes when we go to restaurants, the servers are less than impressed at having, you know, even though we’ve booked for seven people, when they see a big wheelchair come in, they kind of could be less than impressed. Probably the only, like, real discrimination, but it’s kind of funny, is like kids just kind of of say the funniest, “mummy, what’s wrong with that guy?” “Like, look at him” and you could just see the parents, like, dying on the inside. But I kind of think it’s a really good opportunity for the parent to just say, you know, some people have a disability and you know, that’s just how it is. Or come up and say hello. So, I’m hoping that’s what happens. But I definitely have a chuckle every time that happens.

TRISTRAM: I was literally driving my chair through Caloundra two months ago and this little kid on the other side of the road turned and saw me in my power chair and yelled at the top of his voice “Mom, why is that kid in a big pram?” Everyone was mortified, but I thought it was great because it opened up the conversation that allowed me to teach that kid a little bit about disability, which is powerful.

CATE: Yeah. Yeah, absolutely. Um, yeah, or just the stares. Like the big, silent stares. Like the little kids’ eyes seemed to grow to the size of saucers. I’m like, good, you’re getting a bit of an education here.

PETE: Cate, obviously we’re talking about carers. What’s the long-term plan for Hamish? I mean, Mom and Dad again, are getting a little bit older. Obviously. Siblings move away. Like yourself. Is there a long-term plan? Have the family spoken about that?

CATE: We have a little bit. Hamish’s health is not very good. He’s on palliative care. But he has been on palliative care for a number of years now, so it could be, you know, he could live for another 10 years, or it could be quite a lot shorter than that. Um and I guess that, we’ve all said that that we will help in whatever way necessary. Our youngest sister actually has, like, put up her hand and said Hamish can come and live with me whenever mom and Dad can’t take care of him anymore. Andi it’s one of those realities. You know? Fortunately, both my parents are really fit and really healthy at the moment. So, it’s not something that we’ve had to, you know, sit down and really formalize. Um, but, you know, as they’re starting to get a bit older, we will have to do that. But as much as possible we would like to be involved in Hamish’s care. I think that there are some really wonderful organizations and facilities. But, you know, Hamish is a part of our family and has really shaped us all in a in so, so many ways that that we would still really like to be as involved as possible.

TRISTRAM: He’s one of your biggest motivators isn’t a yes?

CATE: Yeah, he is and whenever like you call home, he doesn’t quite get the concept of telephones. So, you just get a lot of heavy breathing when you listen to him. But Mom says that he smiles. But he’s really confused. He’s quite vision impaired so we’re not sure exactly how much he sees. So, we know that he sees, like, shapes and colours. Um, but when you’re around him, he kind of senses your present and your presence, and you normally touch him. So, when he can hear your voice but he can’t, like, feel you are like, see you, he gets really confused. But, um, yeah, we always make sure that whenever you we call home, we have a quick chat to Hamish. And yeah, he’s been a been a very, very central part of our life. And I would say part of, you know, our makeup. And I think that has been a really positive thing as

PETE: Well, yeah, Very nice. Now, our podcast, as you know, is called Grow Bold with Disability. We always ask our guests the last question which is what does growing bold mean to you?

CATE: What does growing bold mean to you? Um, well, I think that, you know, my I guess my life motto, can you have a life motto at 28 years old?

TRISTRAM: Of course. You can have one at 10, 12.

CATE: Okay. All right. Great. I guess you know, my life motto is to be brave. And I think that particularly when we talk about disability, there is so much courage and so much bravery surrounding disability, whether it’s the person who’s disabled, whether it’s the carers, whether it’s the physios who work with them or the hospital staff. And I think that the more people you can envelope in that little bubble the better. And for me, it’s about challenging yourself, challenging society, challenging perspectives. And I think that Hamish definitely does that. You know, I try and challenge myself on an almost daily basis, but I think that Hamish has helped challenge the way that I view life and hopefully go through life. I think he’s taught me to be kind and considerate and compassionate. And I feel like I face life more boldly because he’s in it. So yeah, he’s pretty wonderful.

TRISTRAM: That’s one of our best answers Pete I think/

PETE: That is well Cate?

CATE: Gold medals. Yes.

TRISTRAM: Cate. Thank you so, so much for joining us today on the Grow Bold with Disability podcast brought to you by Feros Care and listeners can find out more about Cate and Hamish in the links provided in today’s episode show notes. Cate, thank you so much.

PETE: Thanks Cate.

CATE: Thanks, guys. Thank you so much for having me.

PETE: This podcast is brought to you by Feros Care, an NDIS partner delivering local area coordination services in Queensland, South Australia, and the Australia Capital Territory. Feros Care is a people care organization committed to helping people leave bolder lives. We call it growing bold and 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 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.