GROWING BOLD AND THE CARER RELATIONSHIP

Tristram Peters Bio

Tristram Peters is a writer, editor, and disability advocate with a keen passion for sport. He recently represented Australia at the powerchair football world cup and sits on the sport’s executive board for the Asia Pacific Oceania zone. He’s also Head of Customer Support and Community Engagement at Clickability, an online directory which helps people with disabilities find and review their supports.

About Clickability

Clickability.com.au is a unique disability service directory, where people with disabilities, carers and referrers (e.g. support coordinators) not only search for new services, but also rate and review ones they’ve used.

Using the directory, people with disability can make an informed choice, as they try to find a service that suits their needs.

Visit www.clickability.com.au to explore services, leave a review, or read our blog. You can also contact us 1800 414 616 or [email protected].

www.clickability.com.au

Growing Bold and the Carer Relationship

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.

Today’s episode of Grow Bold with Disability is Growing Bold and the Carer Relationship. And our guests are our co-host, Mr Tristram Peters and his carer Dan Conaghan. In this episode, we’ll learn a little bit more about our boy Tristram, how Dan became a carer and what these two get up to.

Boys, welcome to Grow Bold with Disability. Cheers Pete. How are we doing?

Ha ha, Tristram. The shoe is on the other foot. Here we go.

It feels very weird. I’m anxious, but ready to go.

People who have listened to our podcast previously would be aware that you have spinal muscular atrophy. Can you explain that to everyone for us please?

Yeah, absolutely. Spinal Muscular Atrophy is essentially a muscle wasting disease. Both mom and dad had recessive genes that got passed onto me. My muscles deteriorated from a very early age and I have required pretty much assistance to do most of my personal care ever since. I need a power wheelchair to get around, and my independence is limited to a large degree because of it.

So, you were born with it, but it slowly crept in. Did you walk?

Yeah, I don’t know if you call it walking, I more hobbled. I hobbled for a while, till I was about two. My mom was the one that was thinking something is not quite right. I wasn’t reaching the same physical milestones as my peers did. She took me to the doctors. Doctor said, “you’re just being overanxious mother, get on with it”.

But mom was certain that there was something amiss. She kept taking me the doctors and finally we got a diagnosis that it was SMA. No one in our family has had SMA. It was a shock and knowing our family really had a disability, so it was something definitely to come to grips with.

So, what does that mean for you day to day? What are your restrictions. What can you do?

Yeah, good question. I am great driving my chair, and that’s about it. I have someone do most of my personal care. Showering, dressing, cutting up my food. Other than talking and drive my chair, I am very reliant for most of the physical day to day tasks on someone else coming in and helping me with them.

Okay, so let us bring Dan on in here. Let us find out a little bit about Dan before we get you two together. Dan when did you become a carer?

I have always been involved in care with Tris sort of informally growing up our entire lives. But I got more evolved in a work capacity once I had left high school. I started doing it for an income at that point. Tris asked me to start helping out with him once he’d left high school, as well to start helping him go to university, which is pretty cool. I was just hanging out with him, falling asleep on beanbags when he was in lectures. A pretty hard life, really! Then I did it a bit more professionally and it was pretty good for a while. But was probably a bit too confronting for me at that point and how old I was as well. I was not ready to deal with events. Then I drifted away from care for about five or six years and then got back into it about three years ago and have been doing it full time since then.

So, fill people in. What is your relationship with Tristram?

Tris is unfortunately my cousin and best friend. I’m also probably considered one of his primary carers as well, so he gets the unfortunate task of me waking him up this morning. I got him up out of bed and we did personal care. So, took him to the bathroom, showered him and got him ready. Dressed and ready to attack the world. Literally told him about my night and unleashed some of my problems on him because my best friend and get to pay him out the whole time as well. And then I get paid and leave the house. So, it’s a pretty good relationship. He cannot escape Pete. That is the issue that he can’t get away from you.

Let us just go back to you too. So are you guys similar in age? I see you both left high school the same time.

I’m two months older than Tris. And therefore, I’m a lot better than him as well. And that is pretty much where my superiority over Tris finishes.

Then you went to uni. You would take Tristram to lectures and you just sit there. Would you just zone out? Would you be paying attention, doing the same course at the same time?

Oh, no, no, no. I would literally fall asleep outside in a beanbag. I would not pay attention in the slightest. Like I am not motivated like Tris in the slightest for self-improvement. He is very different to me. We are cut from a different cloth in that regard. But I would literally, you know, I would be working in a hospitality job at the time and would have a bit of extra time so it’s a good time to hang out with Tris and get to know him post school. Which is, you know, a real form of views in your life as well. I literally would fall asleep in beanbags and Tris was so polite in these study areas that he did not want to shout at me so he would have to run into me to wake me up. And people, of course, would be looking at this guy in a wheelchair who is running into a bloke who is fallen asleep on a beanbag thinking, “What the hell is going on here? It is like, okay, they are mates. It’s all right.”

Tris, is it strange having your cousin as your carer?

Ah, look, I don’t think so. I think it is in many ways a lot easier having your best mate care for you. One, there’s the physical component, but also there’s obviously all the emotional aspects of having a disability and being able to share that with your best mate makes it a lot easier. So, for me it is not all that weird. It is sort of something that I’ve always growing up with. It is just normal, and I love him for it.

But what about those private moments when you just want to like, I do not know, talk to a girl or you know what I mean? Something you do not want anyone else around for. He knows everything.

He does. He does. It is scary. If you ever want to tell all, just blackmail Dan. Because he will spill the beans. Very gladly as well. You don’t even need to blackmail him. He’ll just do it anyway. Put him on a podcast. Yeah, let’s do it now. Let’s just air all my dirty laundry. Dan’s really great at knowing that there is that professional boundary. When he is my support worker, he goes, you know Tris you do need some time by yourself sometimes. And he will not be really overbearing, he’ll just step away and just say call me when you need me. I’ll come and help out, and that makes it so much easier. Like it’s sometimes a difficult thing to navigate that boundary. But Dan does it so well when in that professional capacity as a support worker.

So how many carers have you actually had? Let’s not count Mum or Dad obviously. But professionals.

Yeah, that’s a good question. I legitimately think that I would have easily had 100 plus carers in my life. From going to respite when I was younger. I just go through them. They just don’t want to stay. No, some great carers that have sort of have stuck around for a long, long time for 2 – 3 years that helped me out. That’s a lot of people that, um it’s a strange, strange dynamic. I said to Dan the other day, like that’s a lot of people who have seen me naked. It is strange when you put it like that. But it’s just the way that it is.

What about bad experiences? You have obviously had some bad ones as well.

I have had some shockers. I remember when I was with an organization who will remain nameless many, many years ago. I used to have these very, very like, I don’t know stern, nun-like like, carers who would, like yell at me to do my stretches and become very overbearing in the way in which they don’t see me as a human. They see me as a job essentially, I’m just a client that they help out. And it completely destroys all that human connection. So, as like a 15-year-old having like a 50 year old carer yell at you to do your stretchers and not appreciate you for a human, that’s probably the worst aspect.

Are there times where you sometimes just want to have a professional person cause sometimes it can get too personal?

Ah, yeah. Look I think sometimes that it is easier for me as I’ve always had the disability, so I’ve never had to adjust. So, I don’t really care if their professional or not. More often than not it’s just common sense. If they’ve got common sense, that’s good for me. Like if they just show initiative. And I often say that it’s not necessarily about the qualifications. The people that I get along with the best are carers who were completely new to the industry and don’t have their set patterns and what not. And just get along with me. Those the ones that I really value.

Well, actually, Dan, let me bring you in here. What’s involved in becoming a carer?

I don’t really know the formal aspect. I’ve been very, very fortunate, and this is a cruel thing to say that I’ve always been around disability. It’s sort of like a double-edged sword to say something like that. But being around Tris I have a lot of lived experience around disability, and also hanging around his mates who are some of my really good mates now as well. So when I approached a couple of organizations they’d ask me what experience I had. And previously you didn’t actually need any formal qualification to be a carer. Depending on the company they may want you to so I’m currently going through my Cert IV in Community Access to do care through a company. But I think through your ABN you just need to have your first aid, CPR and a good attitude, and that’s a really big thing, Looking and willing to listen and learn.

So why did you want to become a carer?

Um, I really like helping people. I’d seen Tris with a lot of different cares and a lot of them impact people’s lives very, very personally. And that’s a really powerful thing, helping out people that much. Like I have one client when I was 19, he was at a leadership camp, so he was 16. His last year, year 12 and this story rocks me to my core. So, he had Degenerative Muscular Dystrophy. He was quite small, a metre 20. Very, very underdeveloped for a 16-year-old male. At that point, he looked like a 12-year-old boy who was a little bit overweight. Very, very brittle. Couldn’t run. Very slow, high pitched voice – didn’t really fit in with the rest of the group. And there was an Army course that they went through at the Year 12 camp. So anyway, at this Year 12 camp, the course had a three-meter-tall wall that all the kids had to asend. The kid that I was taking care of immediately say it as like “Nah, cannot do it. No chance in hell.” But then the group of year 12 students we like “no man, we reckon we can get you over this. We can do this”. So, then they all climbed him up, put him over the wall and then slowly lowered him down. And like that was the most empowering thing I think I’ve ever done. Helping someone achieve something they never thought possible. Sorry. So yeah, hoping people do things, helping people do things that they never thought possible. Really moves me and it is selfish, but I love that.

So is Tris your only client at the moment.

Unfortunately for him during Corona Virus, he is. He has to see me seven days a week indefinitely for the future. And I think that’s a great thing at first, until I’m seeing him seven days a week for the indefinite future. And it’s a very real thing two. It’s a double edged sword like Tris is my best friend. I love him to death, but we need space. So at the moment, seeing him that much it is really fantastic. But previous to Corona I was working three different clients, so it’s a bit more variety. It changes up a bit, and it also gives Tris a bit more peace of mind when he’s not seeing me so frequently, like he’s got a very limited team at the moment as well so it’s not just me who suffering under this as well.

So Tris how does this work? Does your carer stay overnight at your house, wake you up in the morning and get you ready to go through your day? Then someone else might swap the shift later that afternoon. Or how does it roll?

Yeah, during daytime I have less support. I am pretty much working on my laptop all day long. So I have a carer rock up at about 7 p.m. to do the whole dinner routine, put me the bed, stay overnight, and then they are usually replaced by another carer in the morning who does the morning routine and does the shower and all that sort of stuff. So, they are big, big shifts. I’ve got a great team of the moment and I think they all enjoy the fact that they get paid to sleep overnight. You know, there are perks. But without that support, I wouldn’t be able to roll myself during the night. I will call out during the night to get rolled. Otherwise, I get pressure sores and that sort of thing, so it’s vital. But it’s also a strange sort of childish way. It’s like sleepovers. We just watch movies and play games, and it’s good fun.

Let’s say you’re having a glass of wine with dinner, then you have a third or fourth. Do you say to Dan, I want a fifth glass of wine. He goes no, you are not allowed to have it. You know what I mean? You want to do something a little bit cheeky or naughty or eat too much food? Is he in control of that? Or are you in control?

Oh, so this is classic Dan and Tris going away. I am a big advocate for empowering the client to do what they want to do. I am not your parent. I am not your mother; I am not your father. I am here to help you achieve what you want to do. It is not what I want to do. I am a massive believer in this. Tris I think sometimes likes to take advantage of this and we’ll tell a story ensuing. We’re down in Melbourne one weekend almost two years ago to the day, actually, and we catch up with a couple of friends on the river in the CBD. We’re having a whole bunch of drinks. It’s a fantastic night. Tris ends up needing to go to the bathroom. So we run up to the bathroom. That’s all great. As we’re coming back from the bathroom, a gentleman steps in front of Tris. This is unbeknownst to the gentleman that Tris is about to drive behind him. As this happens, Tris accidentally drives over the guys ankle foot region. It bends horrifically. We are all horrified thinking Tris had broken the guys ankle. Tris backs up, the guy pulls his ankle away. We’re all really apologetic. It’s all sweet. We continue back to our table after we’ve already had a couple of drinks. The guy then follows us up to our table, apologises to Tris and makes him have another shot. This is the shot that just did it all. So Tris is already fairly…

It’s the one that tips me over the edge.

Yeah, he was already fairly chatty if you catch my drift. So we finish up drinking. We end up continuing up through, I think it is Federation Square in Melbourne, which is quite similar to George Square of Brisbane. It’s a really easy layout for us to navigate. I’m walking beside Tris as we normally do, chatting how the night going, yada yada yada, on our way back to our hotel. As we’re going through Federation Square, probably about 10 meters ahead, I’m like “Hey buddy, there’s a step coming. Okay. Let’s move on from the side”. Tris just continues driving straight. “Hey, Tris, come on, there’s a step coming up like. Come on, buddy, What are you doing?” Tris just continues driving straight.

There is no step Dan.

On the third clap I have to hit Tris’s hand off his controller. “Buddy there’s a step there, like you’re about to go down”. At this point he is like, “Oh, wow, there’s actually a stair there. I didn’t see this.”

So this is like I will empower him to have the drinks. But when it comes to him self harming, I will at some point step in to make sure that his mother and father will still talk to me because at the end of the day they are my auntie and uncle and they are who I am responsible to.

I think that’s a great point that I think needs to follow out is the fact that people with disabilities are so often wrapped in cotton wool and just like everyone else that are able bodied way we learn by taking risks and making mistakes. And as long as the carers help us do that in a really safe environment, that’s how we learn. So it shouldn’t be any different, even if it nearly results in me driving down a flight of stairs. I’m willing to take that risk every single day of the week man.

Do you guys ever fight?

All the time.

Constantly.

I pick fights.

Yes. I know what you to like together, but you know, has it ever got serious?

I reflected with Tris about this a couple of months back that when we were kids, I knew I could not fight with Tris the same way I could fight with my brother and sister. And this is when we were really little, maybe four or five, something like that.

I couldn’t punch or kick Tris like I could my brother or sister because I was the youngest of three. Tris and I would sit on the ground rather than us punching or kicking each other we would lean our foreheads really hard against each other. And that was our way of expressing physical exertion against each other because I knew I couldn’t hit Tris, but I really wanted to hit Tris. So this was like my way of like, arrgghhh. I’m pretty sure Tris got a lot of enjoyment releasing and headbutting me in his own little way as well. I think we’ve grown past that now, you can’t punch people, but I strongly encourage anyone to Google what Tris looks like because he has a noggin on him. But as we’ve grown as adults, I like to think we use words a bit better.

Sometimes we’re still really petty, like I get really, really annoying to Tris when he’ll like ask me to raise his arm obviously to scratch like an itch on his face. But rather than lifting his arm to his face I’ll lift it all the way into the air so it’s completely above his head and then it’s useless to him. So he has to get really, really specific with his directions to me and then people who don’t know that I’ve been antagonizing him all day, doing this for six hours, just hear Tris say “just put my hand to my face, you asshole!” And it’s like I win, I’m the good person here.

Do you ever do things like not plugging in his chair so he cannot do anything the next day?

I am a big fan of pranks, but like that would just piss me off so bad. I’ve had blokes whose chairs haven’t been plugged in the night before. And I then have to push them from halfway through the botanical gardens in Brisbane to a train station on a completely dead chair that weighs 140 kilos, plus the 80-kilo bloke in it. So, I wouldn’t wish that on anyone, let alone Tris. But look, you know, we’ll see how the week plays out. If he keeps being a jerk you know anything’s on the cards.

You haven’t got to go far. We are all in lock down. Hey Tris, there is a lot going on at the moment and we’ve spoken about this in the previous podcasts. In the world of sort of independent living for people with disabilities. How is that as a prospect for you?

Yeah, absolutely. I’m in the midst at the moment of getting my own unit in Brisbane CBD, which is a massive. Whenever you know, as a kid thinking about the future, I always wanted to move out by the age of 30 and I’m going to achieve that, just. I thought you were forty. Just joking. Can’t have you two combined. So it is happening within the next two months, I’ll be living in my own place. It’s gonna be amazing. So that’s gonna be a unit that has some voice activation and you know, automatic doors and is going to allow me to live more independently. But then on top of that, have more support workers coming into the home. I’m not gonna be living with my mom and Dad. So, managing a much bigger team, which is gonna be fun and having to do all the adult things like go shopping and buy my groceries and cook and then clean up afterwards. It’s something that sounds so mundane but something I am looking forward to.

By adults things I want to clarify, he means instruct myself or one of his other support workers to do a better job cleaning. Let’s really call it what it is.

I supervise, that counts.

If you’re gonna pick clothes up off the ground.

He is not a bad supervisor. Delegating, that counts.

You just point, don’t you?

Yeah. He nods with his head sometimes over there.

Now, boys, we all know when we wrap up this podcast, we like to ask the same question, obviously because the podcast is called Grow Bold with Disability. So I’m gonna start with you, Dan. What does living a bold life mean to you?

To me it would be like, it’s a bit cliche, but living like Tris. He lives his life unapologetically, life to the fullest. And, he and I have had this conversation whether he would actually live his life as large as he has if he wasn’t disabled, the fact that because he is disabled he lives his life possibly a little bit fuller and takes more risks because he almost has to. So, I’m yeah, living a life unapologetically and to the fullest. Nice one.

And Tris, what is living a bold life mean to you?

I’ve had so many good answers to that question over the course of the series. I’ve gotta come up with something equally. Dan summed it up. Unashamedly. I suppose for me, I’ve always been a bit stubborn. And I think sometimes it’s important to live life a bit stubbornly. It’s doctors didn’t give me the best diagnosis growing up and for me, that’s what gave me the drive and the motivation to sort of challenge assumptions and what not. So a streak of stubbornness sometimes when channeled appropriatly is the best thing. And that, to me, is living a bold life. It’s being stubborn and a bit cheeky.

Fantastic there, boys. Thank you so much for joining us today on Grow Bold with disability brought to you by Feros Care. And our listeners can find out more about Tristram and Dan if they really want to, in today’s episode shownotes. Thanks boys, thanks for joining us.

Thanks for having us.

You’re alright Dan. See you next time. Cheers bud. See you tomorrow.

Thank you for listening. And if you have enjoyed today’s episode that make sure you subscribe to the podcast Grow Bold with Disability. And if you like what you heard, please take a few moments to pop over iTunes and give our a podcast a quick rating so we can continue these conversations and encourage people to grow bold.

This podcast is brought to you by Feros Care, an NDIS partner delivering local area coordination services in Queensland, South Australia and ACT. Feros Care is a people care organization committed to helping people live bolder lives. We call it growing bold. And for over 25 years, Feros has been making it real for both older Australians and those living with disability. To find our more head over 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.